1 00:00:05,000 --> 00:00:08,600 >>WELCOME, EVERYONE FOR THIS 2 00:00:08,600 --> 00:00:11,440 ACT 2 OF THE VIRTUAL WORKSHOP, 3 00:00:11,440 --> 00:00:14,360 BUILDING A DIVERSE COMMUNITY FOR 4 00:00:14,360 --> 00:00:15,440 DOWN SYNDROME RESEARCH. 5 00:00:15,440 --> 00:00:23,920 I'M A BURD I'M LINDA BURHANSSTI. 6 00:00:23,920 --> 00:00:25,560 I'M WE HEARD YESTERDAY FROM 7 00:00:25,560 --> 00:00:27,280 FAMILIES AND RESEARCHERS ABOUT 8 00:00:27,280 --> 00:00:31,040 THE IMPORTANCE OF DIVERSIFYING 9 00:00:31,040 --> 00:00:31,520 RESEARCH TEAMS AND THE 10 00:00:31,520 --> 00:00:31,840 PARTICIPANTS. 11 00:00:31,840 --> 00:00:35,240 THE THREE SESSIONS WILL FOCUS ON 12 00:00:35,240 --> 00:00:36,360 LEARNING FROM OTHER PROGRAMS OF 13 00:00:36,360 --> 00:00:40,120 THEIR PROCESS OF ENGAGING AND 14 00:00:40,120 --> 00:00:41,120 RETAINING DIVERSE COMMUNITIES 15 00:00:41,120 --> 00:00:42,600 FOR RESEARCH. 16 00:00:42,600 --> 00:00:44,400 EACH SESSION MODERATOR WILL 17 00:00:44,400 --> 00:00:45,640 INTRODUCE THE SPEAKERS AND WE 18 00:00:45,640 --> 00:00:49,480 WILL HAVE DISCUSSION AT THE END 19 00:00:49,480 --> 00:00:51,680 OF EACH SESSION. 20 00:00:51,680 --> 00:00:53,520 THERE WILL BE TWO BREAKS BETWEEN 21 00:00:53,520 --> 00:00:56,920 THE SESSIONS AS WELL. 22 00:00:56,920 --> 00:00:59,400 NEXT SLIDE, PLEASE. 23 00:00:59,400 --> 00:01:01,720 THIS SESSION IS BEING RECORDED. 24 00:01:01,720 --> 00:01:05,840 PLEASE MUTE YOUR MICROPHONE 25 00:01:05,840 --> 00:01:06,360 UNLESS YOU'RE SPEAKING. 26 00:01:06,360 --> 00:01:08,000 YOU'RE FREE TO USE THE CHAT 27 00:01:08,000 --> 00:01:11,200 FUNCTION TO ASK A QUESTION OR 28 00:01:11,200 --> 00:01:12,480 PROVIDE ANY COMMENT. 29 00:01:12,480 --> 00:01:14,040 FOR THOSE WHO WISH TO SPEAK AND 30 00:01:14,040 --> 00:01:17,520 ALSO THE SPEAKERS, PLEASE TURN 31 00:01:17,520 --> 00:01:19,040 ON YOUR VIDEO WHEN ASKING A 32 00:01:19,040 --> 00:01:20,320 QUESTION OR SPEAKING. 33 00:01:20,320 --> 00:01:26,120 WE ARE ALSO PLEASED TO BE 34 00:01:26,120 --> 00:01:26,680 PROVIDING LIVE SIMULTANEOUS 35 00:01:26,680 --> 00:01:29,120 SPANISH INTERPRETATION. 36 00:01:29,120 --> 00:01:29,920 PLEASE, FOR THE SPEAKERS, 37 00:01:29,920 --> 00:01:30,880 REMEMBER TO SPEAK SLOWLY AND FOR 38 00:01:30,880 --> 00:01:34,760 THE ATTENDEES, YOU CAN SEE A 39 00:01:34,760 --> 00:01:35,520 GLOW AT THE BOTTOM OF YOUR 40 00:01:35,520 --> 00:01:38,160 SCREEN THAT SAYS, 41 00:01:38,160 --> 00:01:39,880 INTERPRETATION, AND YOU CAN 42 00:01:39,880 --> 00:01:42,200 SELECT THAT GLOBE FOR LISTENING 43 00:01:42,200 --> 00:01:44,000 IN ENGLISH. 44 00:01:44,000 --> 00:01:47,080 AND FOR THOSE WHO WOULD LIKE TO 45 00:01:47,080 --> 00:01:47,320 LISTEN? 46 00:01:47,320 --> 00:01:48,880 ANY OTHER LANGUAGE THAN ENGLISH 47 00:01:48,880 --> 00:01:50,520 AND SPANISH, YOU CAN USE THE 48 00:01:50,520 --> 00:01:53,240 LIVE TRANSCRIPT AGAIN AT THE 49 00:01:53,240 --> 00:01:59,840 BOTTOM OF YOUR SCREEN. 50 00:01:59,840 --> 00:02:10,160 [ SPEAKING SPANISH ] 51 00:02:16,040 --> 00:02:18,160 SO THE LISTENING SESSION 52 00:02:18,160 --> 00:02:20,720 SUMMARIES WE CONDUCTED BAY IN 53 00:02:20,720 --> 00:02:22,560 MAY OF 2022 WILL BE HOSTED ON 54 00:02:22,560 --> 00:02:26,840 THE INCLUDE WEBSITE AS WELL AS 55 00:02:26,840 --> 00:02:29,160 ANONYMIZED SUM RYE OF THIS 56 00:02:29,160 --> 00:02:32,880 WORKSHOP -- SUMMARY OF THIS 57 00:02:32,880 --> 00:02:33,400 WORKSHOP AND THE VIDEOCAST 58 00:02:33,400 --> 00:02:33,680 RECORDING. 59 00:02:33,680 --> 00:02:36,200 ALSO THE DS CONNECT WEBSITE IS 60 00:02:36,200 --> 00:02:36,400 HERE. 61 00:02:36,400 --> 00:02:37,560 NEXT SLIDE, PLEASE. 62 00:02:37,560 --> 00:02:40,320 I WOULD LIKE TO ACKNOWLEDGE THE 63 00:02:40,320 --> 00:02:42,120 DOWN SYNDROME CONSORTIUM AS WELL 64 00:02:42,120 --> 00:02:44,480 AS THE NIH DOWN SYNDROME WORKING 65 00:02:44,480 --> 00:02:44,760 GROUP. 66 00:02:44,760 --> 00:02:46,120 NEXT SLIDE, PLEASE. 67 00:02:46,120 --> 00:02:50,200 AND OUR INCLUDE LEADERSHIP TEAM, 68 00:02:50,200 --> 00:02:52,040 DR. TABAK, BIANCHI AND GIBBONS. 69 00:02:52,040 --> 00:02:53,680 NEXT SLIDE, PLEASE. 70 00:02:53,680 --> 00:02:55,640 CONDUCTING THIS VIRTUAL WORKSHOP 71 00:02:55,640 --> 00:02:58,240 FEELS LIKE IT'S A BROADWAY SHOW 72 00:02:58,240 --> 00:03:00,880 WHERE ALL MEMBERS HAVE KEY ROLES 73 00:03:00,880 --> 00:03:04,360 IN THE PRODUCTION, ORGANIZATION, 74 00:03:04,360 --> 00:03:04,800 SHOW TIME. 75 00:03:04,800 --> 00:03:06,480 EVERYTHING HAS TO BE IN SYNC. 76 00:03:06,480 --> 00:03:08,880 A HUGE GRATITUDE TO THE PLANNING 77 00:03:08,880 --> 00:03:12,120 COMMITTEE, ESPECIALLY MY 78 00:03:12,120 --> 00:03:14,720 COLLEAGUE AND COLLEAGUE OF THIS 79 00:03:14,720 --> 00:03:18,160 WORKSHOP MA SEE YA GARCIA. 80 00:03:18,160 --> 00:03:22,280 THE OFFICE OF THE DIRECTOR TEAM 81 00:03:22,280 --> 00:03:24,520 IS HERE WITH SUPPORT OF SPEAKERS 82 00:03:24,520 --> 00:03:26,640 AND ATTENDEES. 83 00:03:26,640 --> 00:03:30,120 WITHOUT FURTHER ADIEU, LET ME 84 00:03:30,120 --> 00:03:33,480 INTRODUCE DR. AUSTIN TIN OPENING 85 00:03:33,480 --> 00:03:38,880 THE SECOND DAY WITH THE OPENING 86 00:03:38,880 --> 00:03:45,720 REMARKS -- 87 00:03:45,720 --> 00:03:46,080 >> AUSTIN SIN. 88 00:03:46,080 --> 00:03:49,760 IN 1999 HE WAS THE DIRECTOR OF 89 00:03:49,760 --> 00:03:50,320 THE HHS OFFICE OF MINORITY 90 00:03:50,320 --> 00:03:50,560 HEALTH. 91 00:03:50,560 --> 00:03:55,280 HE HAS A LONG AND DISTINGUISHED 92 00:03:55,280 --> 00:03:55,920 CAREER AND HIS DETAILED BIO IS 93 00:03:55,920 --> 00:03:58,120 ON THE WORKSHOP HOMEPAGE. 94 00:03:58,120 --> 00:04:08,440 WELCOME DR. STINSON. 95 00:04:12,120 --> 00:04:13,160 >> THANK YOU. 96 00:04:13,160 --> 00:04:14,880 WE HAD SELF ADVOCATES, FAMILIES 97 00:04:14,880 --> 00:04:17,320 AND RESEARCHERS YESTERDAY, ON 98 00:04:17,320 --> 00:04:18,160 HOW TO ENGAGE THE COMMUNITY THEY 99 00:04:18,160 --> 00:04:20,600 REPRESENT AND ALSO HOW TO 100 00:04:20,600 --> 00:04:22,920 LEVERAGE SOME RESOURCES WITHIN 101 00:04:22,920 --> 00:04:26,160 NIH SUCH AS THE JOINT INITIATIVE 102 00:04:26,160 --> 00:04:30,160 BETWEEN NHLBI AND NIMHD, A 103 00:04:30,160 --> 00:04:31,760 COMMUNITY ENGAGEMENT ALLIANCE 104 00:04:31,760 --> 00:04:34,160 PRESENTED BY DR. ELIAS. 105 00:04:34,160 --> 00:04:37,280 WE ALSO HEARD ABOUT EFFORTS BY 106 00:04:37,280 --> 00:04:40,120 NIH TO IMPLEMENT POLICIES ON 107 00:04:40,120 --> 00:04:44,840 INCLUSION IN CLINICAL STUDIES 108 00:04:44,840 --> 00:04:47,040 ACROSS THE LIFESPAN. 109 00:04:47,040 --> 00:04:49,160 DR. ROSIER GAVE US MUCH FOOD FOR 110 00:04:49,160 --> 00:04:53,720 THOUGHT DISCUSSING HOW RACE AND 111 00:04:53,720 --> 00:04:56,000 ETHNICITY PLAYS AN IMPORTANT 112 00:04:56,000 --> 00:05:02,160 ROLE IN OUR MEDICAL OUTCOMES, 113 00:05:02,160 --> 00:05:05,920 ESPECIALLY FOR UNDER REPRESENTED 114 00:05:05,920 --> 00:05:06,520 GROUPS IN BIOMEDICAL RESEARCH 115 00:05:06,520 --> 00:05:09,280 AND WHY IT'S IMPORTANT TO BE 116 00:05:09,280 --> 00:05:09,560 INCLUSIVE. 117 00:05:09,560 --> 00:05:12,000 DOCTORS KELLY AND MILLER LED AN 118 00:05:12,000 --> 00:05:14,880 OUTSTANDING PRESENTATION ON 119 00:05:14,880 --> 00:05:17,240 ASCENTING AND CONSENTING, AND 120 00:05:17,240 --> 00:05:22,160 HOW WE CAN LEVERAGE TECHNOLOGY 121 00:05:22,160 --> 00:05:26,520 AND VARIOUS SOCIAL MEDIA TO 122 00:05:26,520 --> 00:05:28,600 CONDUCT THE PROCESS. 123 00:05:28,600 --> 00:05:32,560 THE FINAL PRESENTATION FROM 124 00:05:32,560 --> 00:05:34,160 NHLBI'S DR. BROWN, HIGHLIGHTED 125 00:05:34,160 --> 00:05:38,400 THE IMPORTANCE OF SLEEP AND THE 126 00:05:38,400 --> 00:05:40,480 GAPS IN RESEARCH NEEDED IN THE 127 00:05:40,480 --> 00:05:42,120 SPACE OF SLEEP HEALTH 128 00:05:42,120 --> 00:05:44,880 DISPARITIES IN PERSONS LIVING 129 00:05:44,880 --> 00:05:48,640 WITH AL SYNDROME ACROSS THE 130 00:05:48,640 --> 00:05:52,680 LIFESPAN. 131 00:05:52,680 --> 00:05:53,760 THE THREAD THAT WAS WOVEN 132 00:05:53,760 --> 00:05:55,080 THROUGH ALL THESE PRESENTATIONS 133 00:05:55,080 --> 00:05:56,320 IS ABOUT THE IMPORTANCE OF 134 00:05:56,320 --> 00:05:59,760 COMMUNITY ENGAGEMENT. 135 00:05:59,760 --> 00:06:01,800 AND THE IMPORTANCE IN TREATING 136 00:06:01,800 --> 00:06:03,080 THE COMMUNITY WITH RESPECT AND 137 00:06:03,080 --> 00:06:08,840 LISTENING TO THE WISDOM FROM THE 138 00:06:08,840 --> 00:06:11,320 COMMUNITIES AS WE THINK ABOUT 139 00:06:11,320 --> 00:06:12,000 RESEARCH THAT WOULD BE 140 00:06:12,000 --> 00:06:14,600 BENEFICIAL TO INDIVIDUALS LIVING 141 00:06:14,600 --> 00:06:15,560 WITH DOWN SYNDROME. 142 00:06:15,560 --> 00:06:18,600 IN FACT, IT'S NOT LIKELY TO BE 143 00:06:18,600 --> 00:06:20,880 SUCCESSFUL IF WE DON'T LISTEN TO 144 00:06:20,880 --> 00:06:23,840 THE COMMUNITY. 145 00:06:23,840 --> 00:06:28,480 SO I'M LOOKING FORWARD TO THIS 146 00:06:28,480 --> 00:06:31,280 SECOND DAY OF THIS VERY, VERY 147 00:06:31,280 --> 00:06:32,720 IMPORTANT WORKSHOP. 148 00:06:32,720 --> 00:06:35,560 NOW I'D LIKE TO TURN THE NEXT 149 00:06:35,560 --> 00:06:40,560 SESSION OVER TO MY COLLEAGUE, 150 00:06:40,560 --> 00:06:43,280 DR. LEY, WHO SERVES AS THE 151 00:06:43,280 --> 00:06:44,840 PROJECT SCIENTIST INCLUDE DATA 152 00:06:44,840 --> 00:06:46,480 COORDINATING CENTER AND OVERSEES 153 00:06:46,480 --> 00:06:48,320 THE DEVELOPMENT OF THE INCLUDE 154 00:06:48,320 --> 00:06:53,400 DATA HUB AND OTHER DATA 155 00:06:53,400 --> 00:06:54,160 COORDINATING CENTER-RELATED 156 00:06:54,160 --> 00:06:55,760 ACTIVITIES. 157 00:06:55,760 --> 00:06:58,120 DR. LEY. 158 00:06:58,120 --> 00:07:01,280 >> THANK YOU IT'S MY GREAT 159 00:07:01,280 --> 00:07:03,440 PLEASURE TO INTRODUCE OUR 160 00:07:03,440 --> 00:07:05,240 SESSION SPEAKERS. 161 00:07:05,240 --> 00:07:07,600 FIRST I WANT TO THANK ALL THE 162 00:07:07,600 --> 00:07:09,840 SPEAKERS FOR SESSION 4. 163 00:07:09,840 --> 00:07:12,520 THE TOPIC IS ENSURING 164 00:07:12,520 --> 00:07:14,880 REPRESENTATION IN THE DOWN 165 00:07:14,880 --> 00:07:16,160 SYNDROME SCIENTIFIC WORKFORCE 166 00:07:16,160 --> 00:07:18,040 AMONG INVESTIGATORS AND 167 00:07:18,040 --> 00:07:18,400 TRAINEES. 168 00:07:18,400 --> 00:07:23,680 WE HAVE JOINING US TODAY, SUJATA 169 00:07:23,680 --> 00:07:28,200 BARDHAM, DR. YONG LI, DR. LON 170 00:07:28,200 --> 00:07:29,080 LON AND DR. JIANHUA WU. 171 00:07:29,080 --> 00:07:31,080 FOR THE INTEREST OF TIME, I WILL 172 00:07:31,080 --> 00:07:32,640 GIVE YOU A BRIEF INTRODUCTION OF 173 00:07:32,640 --> 00:07:34,560 EACH SPEAKER BEFORE THEIR TALK. 174 00:07:34,560 --> 00:07:38,920 YOU CAN FIND THEIR FULL BIOON 175 00:07:38,920 --> 00:07:39,440 THE WEBSITE. 176 00:07:39,440 --> 00:07:42,680 A KIND REMINDER TO ALL OF OUR 177 00:07:42,680 --> 00:07:43,360 SPEAKERS. 178 00:07:43,360 --> 00:07:46,160 PLEASE PACE YOURSELF TO ALLOW 179 00:07:46,160 --> 00:07:46,560 FOR INTERPRETATION. 180 00:07:46,560 --> 00:07:50,280 I WILL DO SO AS WELL. 181 00:07:50,280 --> 00:07:54,800 AND TO OUR AUDIENCE, PLEASE FEEL 182 00:07:54,800 --> 00:07:55,560 FREE TO PLACE QUESTIONS OR 183 00:07:55,560 --> 00:07:57,320 COMMENTS IN THE CHAT FOR THE 184 00:07:57,320 --> 00:07:57,640 SPEAKERS. 185 00:07:57,640 --> 00:07:59,680 THEY WILL BE ADDRESSED AT THE 186 00:07:59,680 --> 00:08:00,920 END OF THE SESSION. 187 00:08:00,920 --> 00:08:08,400 WITH THAT, LET'S START WITH 188 00:08:08,400 --> 00:08:09,600 DR. SUJATA BARDHAM. 189 00:08:09,600 --> 00:08:12,680 PROGRAM DIRECTOR AT THE 190 00:08:12,680 --> 00:08:14,680 INTELLECTUAL AND DEVELOPMENTAL 191 00:08:14,680 --> 00:08:16,960 DISABILITIES BRANCH AT THE 192 00:08:16,960 --> 00:08:17,640 NICHD. 193 00:08:17,640 --> 00:08:21,120 DR. SUJATA BARDHAM OBTAINED HER 194 00:08:21,120 --> 00:08:21,960 PH.D. IN BOSTON UNIVERSITY. 195 00:08:21,960 --> 00:08:27,040 SHE JOINED NICHD IN 2013 AND HAS 196 00:08:27,040 --> 00:08:29,720 SERVED AS THE COORDINATOR FOR DS 197 00:08:29,720 --> 00:08:30,120 CONNECT. 198 00:08:30,120 --> 00:08:34,120 ALSO A KEY MEMBER OF THE INCLUDE 199 00:08:34,120 --> 00:08:35,840 PROJECT AND PASSIONATE ABOUT 200 00:08:35,840 --> 00:08:38,480 ENGAGEMENT, OUTREACH AND 201 00:08:38,480 --> 00:08:41,080 INCREASING DIVERSITY, 202 00:08:41,080 --> 00:08:42,640 PARTICIPATION IN DOWN SYNDROME 203 00:08:42,640 --> 00:08:44,120 COMMUNITY. 204 00:08:44,120 --> 00:08:47,360 DR. SUJATA BARDHAM, PLEASE TAKE 205 00:08:47,360 --> 00:08:47,640 THE STAGE. 206 00:08:47,640 --> 00:08:50,720 >> SUJATA BARDHAM: THANK YOU FOR 207 00:08:50,720 --> 00:08:51,800 THAT KIND INTRODUCTION. 208 00:08:51,800 --> 00:08:57,920 NEXT SLIDE, PLEASE. 209 00:08:57,920 --> 00:08:58,200 NEXT SLIDES. 210 00:08:58,200 --> 00:09:00,120 SO, IN MY SHORT PRESENTATION 211 00:09:00,120 --> 00:09:02,640 TODAY, I WILL PRESENT WHAT WE 212 00:09:02,640 --> 00:09:05,240 HERE AT NIH AND INCLUDE HAVE 213 00:09:05,240 --> 00:09:08,520 BEEN DOING TO INCREASE DIVERSITY 214 00:09:08,520 --> 00:09:09,760 IN THE RESEARCH TEAMS. 215 00:09:09,760 --> 00:09:11,880 YESTERDAY WE SAW THE DEMOGRAPHIC 216 00:09:11,880 --> 00:09:14,280 OF PARTICIPANTS IN CLINICAL 217 00:09:14,280 --> 00:09:14,640 RESEARCH. 218 00:09:14,640 --> 00:09:18,120 TODAY, MY FOCUS IS ON RESEARCH. 219 00:09:18,120 --> 00:09:24,040 THE GRAPH HERE ON THE LEFT SHOWS 220 00:09:24,040 --> 00:09:26,560 THE NUMBER OF APPLICANTS, NOT 221 00:09:26,560 --> 00:09:29,960 AWARDEES, WHO APPLIED FOR RO1 TO 222 00:09:29,960 --> 00:09:40,400 NIH IN THE LAST 10 YEARS. 223 00:09:40,800 --> 00:09:41,920 20,000 APPLICANTS 224 00:09:41,920 --> 00:09:42,680 SELF-IDENTIFIED AS WHITE. 225 00:09:42,680 --> 00:09:44,200 AND LET ME DRAW YOUR ATTENTION 226 00:09:44,200 --> 00:09:46,880 TO THE LOWEST LINE ON THIS 227 00:09:46,880 --> 00:09:49,400 GRAPH, THE PURPLE LINE. 228 00:09:49,400 --> 00:09:53,560 THAT REPRESENTS APPLICANTS WHO 229 00:09:53,560 --> 00:09:54,120 SELF-IDENTIFIED AS BLACK. 230 00:09:54,120 --> 00:09:57,000 AND THE HISPANIC IS REPRESENTED 231 00:09:57,000 --> 00:09:59,120 BY THE BLUE RIGHT ON TOP OF THE 232 00:09:59,120 --> 00:10:00,360 PURPLE LINE. 233 00:10:00,360 --> 00:10:04,760 SO WE HAVE A LOT OF CATCHING UP 234 00:10:04,760 --> 00:10:06,160 TO DO. 235 00:10:06,160 --> 00:10:10,920 THE GOOD NEWS, IF YOU LOOK AT 236 00:10:10,920 --> 00:10:11,560 THE TWO GRAPHS ON THE RIGHT, WE 237 00:10:11,560 --> 00:10:12,040 ARE ON THE RIGHT TRACK. 238 00:10:12,040 --> 00:10:12,960 IN THE LAST 10 YEARS, ALTHOUGH 239 00:10:12,960 --> 00:10:14,920 THE NUMBERS ARE LOW, WE HAVE 240 00:10:14,920 --> 00:10:16,680 BEEN INCREASING THE NUMBER OF 241 00:10:16,680 --> 00:10:18,920 RESEARCHERS WHO SELF-IDENTIFY AS 242 00:10:18,920 --> 00:10:23,240 BLACK AND HISPANICS TO APPLY FOR 243 00:10:23,240 --> 00:10:24,400 RESEARCH GRANTS TO THE NIH. 244 00:10:24,400 --> 00:10:26,720 NEXT SLIDE, PLEASE. 245 00:10:26,720 --> 00:10:29,720 SO WE ARE FOLLOWING THE 246 00:10:29,720 --> 00:10:31,360 DIRECTIVE TO US TO INCREASE THE 247 00:10:31,360 --> 00:10:33,320 NUMBER OF TRAINEES AND 248 00:10:33,320 --> 00:10:36,080 INVESTIGATORS STUDYING DOWN 249 00:10:36,080 --> 00:10:38,120 SYNDROME, INCLUDING RESEARCHERS 250 00:10:38,120 --> 00:10:40,000 AND TRAINEES FROM 251 00:10:40,000 --> 00:10:41,400 UNDERREPRESENTED BACKGROUNDS. 252 00:10:41,400 --> 00:10:43,960 NEXT SLIDE, PLEASE. 253 00:10:43,960 --> 00:10:46,120 THE SOON-TO-BE PUBLISHED INCLUDE 254 00:10:46,120 --> 00:10:49,680 DOWN SYNDROME RESEARCH PLAN ALSO 255 00:10:49,680 --> 00:10:52,000 CALLS OUT THIS KEY POINT OF 256 00:10:52,000 --> 00:10:54,120 EXPANDING THE PIPELINE OF NEW 257 00:10:54,120 --> 00:10:56,080 AND EARLY-STAGY INVESTIGATORS OF 258 00:10:56,080 --> 00:10:59,160 ALL BACKGROUNDS. 259 00:10:59,160 --> 00:11:00,320 WE ARE FORTUNATE THAT WITH THE 260 00:11:00,320 --> 00:11:02,040 INCLUDE FUNDS WE HAVE BEEN 261 00:11:02,040 --> 00:11:04,720 RECEIVING, WE HAVE SUPPORTED 262 00:11:04,720 --> 00:11:07,800 ABOUT 30 TRAINEES IN THE LAST 263 00:11:07,800 --> 00:11:08,960 FOUR YEARS, INCLUDING SEVERAL 264 00:11:08,960 --> 00:11:12,400 NEW AND EARLY-STAGE 265 00:11:12,400 --> 00:11:12,760 INVESTIGATORS. 266 00:11:12,760 --> 00:11:14,120 WHAT I'M MOST EXCITED ABOUT IS 267 00:11:14,120 --> 00:11:18,120 THAT WE ARE ABLE TO BRING IN NEW 268 00:11:18,120 --> 00:11:21,840 INVESTIGATORS WHO ARE EXPERTS IN 269 00:11:21,840 --> 00:11:23,240 OTHER TOPICS TO THE DOWN 270 00:11:23,240 --> 00:11:25,240 SYNDROME RESEARCH COMMUNITY. 271 00:11:25,240 --> 00:11:27,680 NEXT SLIDE, PLEASE. 272 00:11:27,680 --> 00:11:30,120 INCLUDE ALSO LAUNCHED THE DATA 273 00:11:30,120 --> 00:11:31,440 COORDINATING CENTER. 274 00:11:31,440 --> 00:11:37,120 THAT HAS CREATED A CLOUD BASE 275 00:11:37,120 --> 00:11:38,960 OPEN, DIGITAL AREA TO COLLECT, 276 00:11:38,960 --> 00:11:41,360 INTEGRATE, HARMONIZE AND SHARE 277 00:11:41,360 --> 00:11:44,240 DATA FROM VARIOUS STUDIES THAT 278 00:11:44,240 --> 00:11:45,840 WE ARE FUNDING, FOCUSED ON DOWN 279 00:11:45,840 --> 00:11:50,200 SYNDROME TO, MAXIMIZE AND 280 00:11:50,200 --> 00:11:54,120 ACCELERATE DISCOVERIES. 281 00:11:54,120 --> 00:11:55,800 ONE OF THE -- OF THE DATA 282 00:11:55,800 --> 00:11:56,880 COORDINATING CENTER IS THE 283 00:11:56,880 --> 00:11:58,320 ADMINISTRATIVE AND OUTREACH 284 00:11:58,320 --> 00:12:00,200 CORE. 285 00:12:00,200 --> 00:12:02,920 UNDER THE LEADERSHIP OF 286 00:12:02,920 --> 00:12:04,200 DR. ESPINOZA WHO LEADS THIS 287 00:12:04,200 --> 00:12:06,520 CORE, THE INCLUDE DCC ALSO 288 00:12:06,520 --> 00:12:09,160 CONDUCTED LISTENING SESSIONS AND 289 00:12:09,160 --> 00:12:13,960 SPOKE TO SEVERAL DOWN SYNDROME 290 00:12:13,960 --> 00:12:14,280 ORGANIZATIONS. 291 00:12:14,280 --> 00:12:16,600 OVER 36 COMMUNITY MEMBERS AND 292 00:12:16,600 --> 00:12:17,080 CLINICAL PROFESSIONALS. 293 00:12:17,080 --> 00:12:18,880 SO WHAT THEY LEARNED IS 294 00:12:18,880 --> 00:12:20,960 SIMILAR -- NEXT SLIDE, PLEASE -- 295 00:12:20,960 --> 00:12:22,320 TO WHAT WE HEARD YESTERDAY FROM 296 00:12:22,320 --> 00:12:23,680 OUR STAKEHOLDERS. 297 00:12:23,680 --> 00:12:29,960 WE NEED TO INCREASE OUR 298 00:12:29,960 --> 00:12:30,600 COMMUNICATION, EDGE AND LEVERAGE 299 00:12:30,600 --> 00:12:31,000 PARTNERSHIPS. 300 00:12:31,000 --> 00:12:32,480 WE ALSO HEARD FROM DR. ROSSER 301 00:12:32,480 --> 00:12:34,880 ABOUT THE DIVERSITY IN THE DATA 302 00:12:34,880 --> 00:12:35,680 THAT WE COLLECT. 303 00:12:35,680 --> 00:12:41,360 AS PART OF INCLUDE, WE HAVE BEEN 304 00:12:41,360 --> 00:12:42,120 SUPPORTING DEIA INITIATIVES 305 00:12:42,120 --> 00:12:44,080 SINCE THIS PROGRAM STARTED. 306 00:12:44,080 --> 00:12:46,960 I WAS FORT NOT CO-LEAD A 307 00:12:46,960 --> 00:12:50,040 BREAKOUT SESSION BACK IN 2019 308 00:12:50,040 --> 00:12:53,200 AND THE IRONY IS THAT WE WERE 309 00:12:53,200 --> 00:12:54,560 PLANNING FOR A COHORT ALTHOUGH 310 00:12:54,560 --> 00:12:55,880 WE WERE ALL IN-PERSON. 311 00:12:55,880 --> 00:12:58,120 THIS WAS PRE-COVID. 312 00:12:58,120 --> 00:13:00,000 THAT WORKING GROUP NOW HAS A 313 00:13:00,000 --> 00:13:01,040 PAPER. 314 00:13:01,040 --> 00:13:02,120 IT'S SOON-TO-BE PUBLISHED IN THE 315 00:13:02,120 --> 00:13:08,040 INTERNATIONAL REVIEW OF RESEARCH 316 00:13:08,040 --> 00:13:08,600 DEVELOPMENT OF DISABILITIES 317 00:13:08,600 --> 00:13:09,160 ABOUT WHAT WE LEARNED ABOUT 318 00:13:09,160 --> 00:13:09,680 PARTICIPANT ENGAGEMENT. 319 00:13:09,680 --> 00:13:10,520 NEXT SLIDE, PLEASE. 320 00:13:10,520 --> 00:13:12,840 EARLIER THIS YEAR, THE INCLUDE 321 00:13:12,840 --> 00:13:14,440 DCC ALSO SPONSORED AND HOSTED 322 00:13:14,440 --> 00:13:17,760 THE FIRST DATA SCIENCE FOR 323 00:13:17,760 --> 00:13:19,960 DIVERSE COHORTS AND HAD MANY 324 00:13:19,960 --> 00:13:21,720 TRAINEES, 11 FROM 325 00:13:21,720 --> 00:13:22,760 UNDERREPRESENTED FOLKS WITH THE 326 00:13:22,760 --> 00:13:25,000 FOCUS ON CAREER DEVELOPMENT AND 327 00:13:25,000 --> 00:13:25,400 NETWORKING. 328 00:13:25,400 --> 00:13:27,400 NEXT SLIDE, PLEASE. 329 00:13:27,400 --> 00:13:28,840 THIS WORKSHOP AND THE LISTENING 330 00:13:28,840 --> 00:13:31,640 SESSION THAT WE CONDUCTED HAVE 331 00:13:31,640 --> 00:13:32,920 INFORMED OUR ACTIVITIES WHICH 332 00:13:32,920 --> 00:13:35,520 HAVE BEEN SUPPORTED BY INCLUDE. 333 00:13:35,520 --> 00:13:36,640 NEXT SLIDE, PLEASE. 334 00:13:36,640 --> 00:13:38,920 AND REALLY QUICKLY, FUNDING 335 00:13:38,920 --> 00:13:40,520 OPPORTUNITY ANNOUNCEMENTS THAT 336 00:13:40,520 --> 00:13:44,120 WE HAVE BEEN PUBLISHING, THE NEW 337 00:13:44,120 --> 00:13:45,720 INCLUDE OPPORTUNITIES ARE 338 00:13:45,720 --> 00:13:47,600 ADHERING TO THE PRINCIPLES OF 339 00:13:47,600 --> 00:13:50,800 NIH'S INTEREST IN ENCOURAGING 340 00:13:50,800 --> 00:13:53,160 DIVERSE RECRUITMENT AS WELL AS 341 00:13:53,160 --> 00:13:55,000 ALLOWING FOREIGN APPLICANTS AND 342 00:13:55,000 --> 00:13:58,320 INCREASING THE DIVERSITY IN 343 00:13:58,320 --> 00:13:59,920 INVESTIGATORS AND SUBJECTS. 344 00:13:59,920 --> 00:14:02,920 THANK YOU FOR THAT REMINDER. 345 00:14:02,920 --> 00:14:07,040 SO A FEW OF THE NOTICES AND 346 00:14:07,040 --> 00:14:07,640 FUNDING OPPORTUNITY 347 00:14:07,640 --> 00:14:08,640 ANNOUNCEMENTS THAT WE HAVE BEEN 348 00:14:08,640 --> 00:14:11,560 ABLE TO PUBLISH IN THIS SPACE, 349 00:14:11,560 --> 00:14:17,880 WE JUST HEARD FROM DR. TIN SEN, 350 00:14:17,880 --> 00:14:19,120 OF THE IMPORTANCE OF TECHNOLOGY 351 00:14:19,120 --> 00:14:19,400 AND HEALTH. 352 00:14:19,400 --> 00:14:21,920 WE HAVE PUBLISHED THAT NOTICE 353 00:14:21,920 --> 00:14:23,320 THIS PAST YEAR. 354 00:14:23,320 --> 00:14:26,960 WE WANT TO BROADEN OUR FUNDING 355 00:14:26,960 --> 00:14:30,160 TO DIFFERENT AREAS THAT 356 00:14:30,160 --> 00:14:31,960 HISTORICALLY RECEIVED LOW LEVELS 357 00:14:31,960 --> 00:14:34,120 OF SUPPORT FROM NIH. 358 00:14:34,120 --> 00:14:38,120 THESE TWO R15 NOTICES SUPPORTS 359 00:14:38,120 --> 00:14:40,440 PACK TEE DEVELOPMENT AND 360 00:14:40,440 --> 00:14:41,000 INSTITUTIONAL RESEARCH, 361 00:14:41,000 --> 00:14:43,240 INFRASTRUCTURE IN THESE AREAS. 362 00:14:43,240 --> 00:14:48,160 IN ADDITION TO ENHANCING THE 363 00:14:48,160 --> 00:14:50,320 COMPLETENESS OF INVESTIGATORS 364 00:14:50,320 --> 00:14:53,360 AND THE RESEARCH CAPACITIES OF 365 00:14:53,360 --> 00:14:54,960 INSTITUTIONS IN IDEA STATES PLUS 366 00:14:54,960 --> 00:14:56,160 PUERTO RICO. 367 00:14:56,160 --> 00:14:57,960 THE PROGRAM SERVES THE UNIQUE 368 00:14:57,960 --> 00:15:02,960 POPULATION SUCH AS THE RULER AND 369 00:15:02,960 --> 00:15:04,000 MEDICALLY UNDER-SERVED 370 00:15:04,000 --> 00:15:04,280 COMMUNITIES. 371 00:15:04,280 --> 00:15:06,280 I'M PROUD TO SAY THAT INCLUDE 372 00:15:06,280 --> 00:15:11,080 HAS PUBLISHED AN R21 NOTICE ON 373 00:15:11,080 --> 00:15:12,040 COMMUNITY-BASED PARTICIPATORY 374 00:15:12,040 --> 00:15:13,240 RESEARCH INITIATIVE IN REDUCING 375 00:15:13,240 --> 00:15:16,240 HEALTH DISPARITIES TO ADDRESS 376 00:15:16,240 --> 00:15:17,400 DIVERSE PARTICIPATION IN 377 00:15:17,400 --> 00:15:19,440 RESEARCH ON DOWN SYNDROME. 378 00:15:19,440 --> 00:15:22,120 THIS NOTICE IS THE RESULT OF THE 379 00:15:22,120 --> 00:15:23,320 2019 BREAKOUT SESSION FEEDBACK 380 00:15:23,320 --> 00:15:28,400 THAT I MENTIONED EARLIER. 381 00:15:28,400 --> 00:15:31,920 LASTLY, YOU WILL HEAR -- SORRY, 382 00:15:31,920 --> 00:15:34,040 I FORGOT TO MENTION THAT WE ARE 383 00:15:34,040 --> 00:15:38,960 ALSO FORTUNATE TO BE ABLE TO 384 00:15:38,960 --> 00:15:40,800 FUND TWO RESEARCHERS WHO APPLIED 385 00:15:40,800 --> 00:15:46,160 TO THE NIH CAUSE IN THE DEIA MAY 386 00:15:46,160 --> 00:15:54,360 BE AND ADMINISTRATIVE SUPPLE 387 00:15:54,360 --> 00:15:54,680 SUPPLEMENT. 388 00:15:54,680 --> 00:15:56,560 AND IN OUR INSTITUTES AND 389 00:15:56,560 --> 00:15:58,800 CENTERS, INCLUDING NIH, HAVE 390 00:15:58,800 --> 00:16:01,200 JOINED THE SCIENCE EDUCATION 391 00:16:01,200 --> 00:16:01,600 PARTNERSHIP AWARD. 392 00:16:01,600 --> 00:16:05,320 SINCE WE BELIEVE THAT THE 393 00:16:05,320 --> 00:16:05,960 PATHWAY TO INCREASED DIVERSE 394 00:16:05,960 --> 00:16:08,960 INVESTIGATORS AND TRAINEES 395 00:16:08,960 --> 00:16:12,840 STARTS IN OUR SCHOOLS FROM PRE-K 396 00:16:12,840 --> 00:16:14,120 TO HIGH SCHOOL. 397 00:16:14,120 --> 00:16:18,680 NEXT SLIDE, PLEASE. 398 00:16:18,680 --> 00:16:19,320 LASTLY, THE MOST IMPORTANT, 399 00:16:19,320 --> 00:16:20,240 OUTREACH IS A HUGE PART WHAT 400 00:16:20,240 --> 00:16:22,120 HAVE WE DO. 401 00:16:22,120 --> 00:16:23,880 WE HAD A PAUSE FOR COVID BUT WE 402 00:16:23,880 --> 00:16:27,160 ARE BACK IN THE GAME. 403 00:16:27,160 --> 00:16:29,320 OUR SMALL BUT FEISTY TEAM, WE 404 00:16:29,320 --> 00:16:30,680 ARE BUSY ATTENDING EVENTS TO 405 00:16:30,680 --> 00:16:32,920 CONNECT AND ENGAGE PARTICIPANTS 406 00:16:32,920 --> 00:16:34,520 ALL OVER THE U.S. AND THE WORLD. 407 00:16:34,520 --> 00:16:37,280 SO IF YOU HAVE ANY EVENT IN YOUR 408 00:16:37,280 --> 00:16:38,440 COMMUNITY, PLEASE REACH OUT TO 409 00:16:38,440 --> 00:16:39,000 US. 410 00:16:39,000 --> 00:16:41,600 WE CAN SEND YOU MATERIALS IF YOU 411 00:16:41,600 --> 00:16:43,360 CAN NOT ATTEND IN PERSON. 412 00:16:43,360 --> 00:16:50,920 THANK YOU FOR YOUR ATTENTION. 413 00:16:50,920 --> 00:16:54,120 >> THANK YOU. 414 00:16:54,120 --> 00:16:55,600 PLEASE TAG THE INCLUDE PROJECT 415 00:16:55,600 --> 00:16:58,120 WEBSITE FOR UP-TO-DATE 416 00:16:58,120 --> 00:16:59,480 OPPORTUNITIES INCLUDING THE 417 00:16:59,480 --> 00:17:02,680 INITIATIVE TO PROMOTE DIVERSITY. 418 00:17:02,680 --> 00:17:07,160 LET'S WELCOME OUR NEXT SPEAKER, 419 00:17:07,160 --> 00:17:08,880 DR. CHRISTY LEY. 420 00:17:08,880 --> 00:17:11,640 THE SOCIAL SCIENCE ANALYST AT 421 00:17:11,640 --> 00:17:14,120 THE NIH CHIEF OFFICER FOR 422 00:17:14,120 --> 00:17:17,800 SCIENTIFIC WORKFORCE DIVERSITY 423 00:17:17,800 --> 00:17:20,560 OFFICE, SO-CALLED COSWD WHERE 424 00:17:20,560 --> 00:17:23,640 SHE MANAGES ON STRATEGIC 425 00:17:23,640 --> 00:17:26,120 PLANNING, PROGRAM EVALUATION AND 426 00:17:26,120 --> 00:17:27,240 EVIDENCE-BASED PROGRAM DESIGN. 427 00:17:27,240 --> 00:17:32,560 SHE HOLDS A PH.D. AND MASTERS IN 428 00:17:32,560 --> 00:17:37,440 SOCIOLOGY FROM HARVARD 429 00:17:37,440 --> 00:17:37,920 UNIVERSITY AND CURRENT 430 00:17:37,920 --> 00:17:39,720 PRIORITIES INCLUDE THE COSWD 431 00:17:39,720 --> 00:17:44,240 STRATEGIC PLAN FOR FISCAL YEAR 432 00:17:44,240 --> 00:17:45,800 2022-2026. 433 00:17:45,800 --> 00:17:46,360 ORGANIZATIONAL DEVELOPMENT 434 00:17:46,360 --> 00:17:48,440 TRAINING AND A LARGE-SCALE 435 00:17:48,440 --> 00:17:50,960 RECRUITMENT INITIATIVE TO 436 00:17:50,960 --> 00:17:53,040 ENHANCE DIVERSITY AND 437 00:17:53,040 --> 00:17:54,920 PROGRAMMATIC IMPACT. 438 00:17:54,920 --> 00:17:56,920 TOGETHER WITH OUR RANGE OF 439 00:17:56,920 --> 00:17:58,440 PLANNING AND EVALUATION EFFORTS. 440 00:17:58,440 --> 00:18:01,040 WELCOME DR. CHRISTY LEY. 441 00:18:01,040 --> 00:18:03,240 >> CHRISTY LEY: THANK YOU. 442 00:18:03,240 --> 00:18:04,520 REALLY APPRECIATE THE 443 00:18:04,520 --> 00:18:06,120 INTRODUCTION AND GOOD AFTERNOON, 444 00:18:06,120 --> 00:18:06,400 EVERYONE. 445 00:18:06,400 --> 00:18:08,920 IT'S A REAL PLEASURE AND A 446 00:18:08,920 --> 00:18:11,920 PRIVILEGE TO BE JOINING YOU 447 00:18:11,920 --> 00:18:12,320 TODAY. 448 00:18:12,320 --> 00:18:13,920 AND I WANT TO THANK THE 449 00:18:13,920 --> 00:18:16,880 ORGANIZERS FOR THIS GENEROUS 450 00:18:16,880 --> 00:18:17,400 INVITATION. 451 00:18:17,400 --> 00:18:19,040 DOWN SYNDROME, AN AREA THAT 452 00:18:19,040 --> 00:18:21,760 DEMANDS SUCH A DIVERSE 453 00:18:21,760 --> 00:18:22,320 INTERDISCIPLINARY SCIENTIFIC 454 00:18:22,320 --> 00:18:23,560 APPROACH IN ADDITION TO OTHER 455 00:18:23,560 --> 00:18:26,000 FORMS OF DEMOGRAPHIC DIVERSITY 456 00:18:26,000 --> 00:18:29,120 IN THE RESEARCHER AND CLINICAL 457 00:18:29,120 --> 00:18:30,640 RESEARCH PARTICIPANT 458 00:18:30,640 --> 00:18:31,400 POPULATIONS, WHICH THE VARIOUS 459 00:18:31,400 --> 00:18:33,360 SESSIONS ACROSS THIS WORKSHOP 460 00:18:33,360 --> 00:18:35,280 HAVE BEEN COVERING, REALLY 461 00:18:35,280 --> 00:18:37,320 HIGHLIGHTS THE NEED FOR 462 00:18:37,320 --> 00:18:38,920 ENHANCING DIVERSITY AMONG 463 00:18:38,920 --> 00:18:41,440 RESEARCHERS IN A MEANINGFUL AND 464 00:18:41,440 --> 00:18:42,080 SUN STAINABLE WAYS. 465 00:18:42,080 --> 00:18:46,120 NEXT SLIDE, PLEASE. 466 00:18:46,120 --> 00:18:47,880 SO TO HELP INFORM SOME OF THE 467 00:18:47,880 --> 00:18:51,400 DOWN SYNDROME RESEARCH 468 00:18:51,400 --> 00:18:52,520 COMMUNITIES TO ADDRESS 469 00:18:52,520 --> 00:18:55,160 DIVERSITY, I PLAN TO ADDRESS 470 00:18:55,160 --> 00:18:55,600 THREE MAIN QUESTIONS. 471 00:18:55,600 --> 00:18:56,760 FIRST I WANT TO COVER DIVERSITY 472 00:18:56,760 --> 00:18:58,880 IN THE SCIENTIFIC WORKFORCE 473 00:18:58,880 --> 00:18:59,120 MATTERS. 474 00:18:59,120 --> 00:19:00,200 AND SEVERAL OF THE PRESENTATIONS 475 00:19:00,200 --> 00:19:02,120 HAVE FOCUSED ON THIS IN VARIOUS 476 00:19:02,120 --> 00:19:04,400 WAYS SO I'M GOING TO SYNTHESIZE 477 00:19:04,400 --> 00:19:07,440 AND PROVIDE JUST SOME ADDITIONAL 478 00:19:07,440 --> 00:19:08,240 INSIGHTS THERE. 479 00:19:08,240 --> 00:19:10,120 AND THEN CONNECT THAT WITH 480 00:19:10,120 --> 00:19:14,120 SECOND, COSWD'S STRATEGIES FOR 481 00:19:14,120 --> 00:19:14,880 ADDRESSING DEIMENTED A TO 482 00:19:14,880 --> 00:19:16,440 PROVIDE YOU WITH A SENSE OF THE 483 00:19:16,440 --> 00:19:18,120 SCOPE AND OVERARCHING APPROACHES 484 00:19:18,120 --> 00:19:20,040 FOR TAKING AN EVIDENCE-BASED 485 00:19:20,040 --> 00:19:23,480 APPROACH, WHICH HAS REALLY BEEN 486 00:19:23,480 --> 00:19:24,840 CENTRAL TO US. 487 00:19:24,840 --> 00:19:28,760 AND THEN FINALLY, I'LL DISCUSS 488 00:19:28,760 --> 00:19:30,360 SOME OF THE SPECIFIC 489 00:19:30,360 --> 00:19:32,960 OPPORTUNITIES FOR ENHANCING DEIA 490 00:19:32,960 --> 00:19:35,920 IN THE SCIENTIFIC WORKFORCE, 491 00:19:35,920 --> 00:19:38,040 CONNECTING THOSE TO SOME OF THE 492 00:19:38,040 --> 00:19:41,040 AREAS THAT COSW DOES. FOCUSING 493 00:19:41,040 --> 00:19:43,640 ON, PARTICULARLY BECAUSE THEY 494 00:19:43,640 --> 00:19:44,480 ARE RIPE OPPORTUNITIES FOR 495 00:19:44,480 --> 00:19:45,880 PARTNERSHIPS FOR A SMALL OFFICE 496 00:19:45,880 --> 00:19:49,720 AND WE DO OUR WORK EFFECTIVELY 497 00:19:49,720 --> 00:19:51,000 LIE BUILDING IMPORTANT 498 00:19:51,000 --> 00:19:51,360 COLLABORATIONS. 499 00:19:51,360 --> 00:19:56,080 NEXT SLIDE, PLEASE. 500 00:19:56,080 --> 00:19:58,160 SO WHY IS DIVERSITY IN THE 501 00:19:58,160 --> 00:20:04,160 SCIENTIFIC WORKFORCE MATTER? 502 00:20:04,160 --> 00:20:07,400 SO WE CAN TACKLE LARGE, COMPLEX 503 00:20:07,400 --> 00:20:10,120 PROBLEMS FROM A RANGE OF ANGLES. 504 00:20:10,120 --> 00:20:11,280 NEXT SLIDE, PLEASE. 505 00:20:11,280 --> 00:20:14,680 AND WE KNOW FROM THE RESEARCH ON 506 00:20:14,680 --> 00:20:16,920 DIVERSITY THAT DIVERSITY IN 507 00:20:16,920 --> 00:20:19,480 BIOMEDICAL RESEARCH, IN 508 00:20:19,480 --> 00:20:21,080 PARTICULAR MATTERS, AS IT DOES 509 00:20:21,080 --> 00:20:22,680 ACROSS MANY TEAM AND 510 00:20:22,680 --> 00:20:24,480 ORGANIZATIONAL SETTINGS FOR 511 00:20:24,480 --> 00:20:25,080 VARIOUS REASONS. 512 00:20:25,080 --> 00:20:26,320 IMPROVES METHODICAL AND 513 00:20:26,320 --> 00:20:27,880 ANALYTICAL APPROACHES THAT ARE 514 00:20:27,880 --> 00:20:30,000 CENTRAL TO SCIENCE. 515 00:20:30,000 --> 00:20:30,760 THEREBY INCREASING INNOVATION. 516 00:20:30,760 --> 00:20:33,360 AND WILL IT INCREASES THE 517 00:20:33,360 --> 00:20:36,000 QUALITY OF SCHOLARSHIP AS WELL 518 00:20:36,000 --> 00:20:37,120 AS PROMOTING COLLABORATION 519 00:20:37,120 --> 00:20:40,360 ACROSS TEAMS AND MEMBERS. 520 00:20:40,360 --> 00:20:43,200 IT ALSO LEADS TO MORE EXPANSIVE 521 00:20:43,200 --> 00:20:45,640 RESEARCH BY HAVING MORE 522 00:20:45,640 --> 00:20:46,560 PERSPECTIVES AND OUTCOME 523 00:20:46,560 --> 00:20:49,800 VARIATIONS WHEN LOOKING AT 524 00:20:49,800 --> 00:20:50,240 DIVERSE POPULATIONS. 525 00:20:50,240 --> 00:20:54,000 NEXT SLIDE, PLEASE. 526 00:20:54,000 --> 00:20:56,720 SO, WE KNOW WE ARE ALL THE 527 00:20:56,720 --> 00:20:57,880 DIVERSITY PLAYS THIS CRITICAL 528 00:20:57,880 --> 00:21:01,320 ROLE FOR ACCOMPLISHING OUR 529 00:21:01,320 --> 00:21:05,680 MISSION AT NIH AND IN THE 530 00:21:05,680 --> 00:21:06,280 BROADER BIOMEDICAL COMMUNITY. 531 00:21:06,280 --> 00:21:06,920 AND I WANTED TO HIGHLIGHT JUST 532 00:21:06,920 --> 00:21:11,400 SOME OF THE ACTUAL MECHANISMS 533 00:21:11,400 --> 00:21:11,720 BEHIND THAT. 534 00:21:11,720 --> 00:21:12,600 WE HEAR ABOUT THE VALUE OF 535 00:21:12,600 --> 00:21:14,200 DIVERSITY AND SOME OF THE 536 00:21:14,200 --> 00:21:17,400 POSITIVE OUTCOMES BUT ONE OF THE 537 00:21:17,400 --> 00:21:19,240 THINGS THAT OCCURS IS MANY 538 00:21:19,240 --> 00:21:22,120 PEOPLE BELIEVE THAT 539 00:21:22,120 --> 00:21:23,880 HETEROGENEOUS GROUPS HAVE 540 00:21:23,880 --> 00:21:24,840 GREATER RETENTION. 541 00:21:24,840 --> 00:21:26,080 THERE IS VARIOUS DIFFERENT 542 00:21:26,080 --> 00:21:27,520 PERSPECTIVESES AND PEOPLE MAY 543 00:21:27,520 --> 00:21:27,800 NOT AGREE. 544 00:21:27,800 --> 00:21:29,880 AND IN FACT, THAT'S PARTLY TRUE 545 00:21:29,880 --> 00:21:32,560 BUT THAT IS ACTUALLY WHAT CAN 546 00:21:32,560 --> 00:21:34,560 HELP BUILD SOME OF THE DIVERSE 547 00:21:34,560 --> 00:21:36,080 PERSPECTIVES, PARTICULARLY WHEN 548 00:21:36,080 --> 00:21:37,600 THOSE GROUPS ARE WELL-DESIGNED 549 00:21:37,600 --> 00:21:41,200 IN TERMS OF A FLATTER 550 00:21:41,200 --> 00:21:41,840 ORGANIZATIONAL STRUCTURE. 551 00:21:41,840 --> 00:21:43,240 THEN COMING TOGETHER AND THEY 552 00:21:43,240 --> 00:21:44,640 TEND TO ENGAGE IN MORE 553 00:21:44,640 --> 00:21:47,040 FACT-BASED DECISION-MAKING, 554 00:21:47,040 --> 00:21:47,920 WHICH LEADS TO GREATER ACCURACY. 555 00:21:47,920 --> 00:21:51,000 THEY PREPARE MORE AND ENGAGE IN 556 00:21:51,000 --> 00:21:53,520 MORE PERSPECTIVE TAKING. 557 00:21:53,520 --> 00:21:54,920 IN SOME WAYS ANTICIPATING THAT 558 00:21:54,920 --> 00:21:55,440 OTHERS MAY NOT SHARE THEIR 559 00:21:55,440 --> 00:21:55,840 VIEWS. 560 00:21:55,840 --> 00:21:58,400 SO A POSITIVE EFFECT. 561 00:21:58,400 --> 00:22:01,000 AND THEY ARE MORE DILIGENT WITH 562 00:22:01,000 --> 00:22:02,120 INFORMATION. 563 00:22:02,120 --> 00:22:02,880 SO IN OTHER WORDS, ANTICIPATING 564 00:22:02,880 --> 00:22:05,720 THAT OTHERS MAY NOT AGREE WITH 565 00:22:05,720 --> 00:22:07,000 YOU MAKES YOU, INDIVIDUALLY, AND 566 00:22:07,000 --> 00:22:10,040 THE GROUP COLLECTIVELY, MORE 567 00:22:10,040 --> 00:22:11,760 RIGOROUS, MORE RIGOROUSLY 568 00:22:11,760 --> 00:22:12,560 DEVELOP YOUR THOUGHTS AND LEAD 569 00:22:12,560 --> 00:22:14,560 TO MORE ACCURATE DECISIONS. 570 00:22:14,560 --> 00:22:16,800 AND THE EXAMPLES HERE HAVE 571 00:22:16,800 --> 00:22:20,760 REALLY OCCURRED ACROSS A RANGE 572 00:22:20,760 --> 00:22:22,120 OF CONTEXT FROM MOCK JURY PANELS 573 00:22:22,120 --> 00:22:25,200 TO EVEN BROADER CONTEXT SUCH AS 574 00:22:25,200 --> 00:22:26,040 ECONOMIC MARKETS. 575 00:22:26,040 --> 00:22:32,120 NEXT SLIDE, PLEASE. 576 00:22:32,120 --> 00:22:32,760 BEYOND THOSE VARIOUS CONTEXT 577 00:22:32,760 --> 00:22:35,760 MORE GENERALLY, WE THAN 578 00:22:35,760 --> 00:22:38,120 DIVERSITY IMPROVES SCIENCE IN 579 00:22:38,120 --> 00:22:38,440 PARTICULAR. 580 00:22:38,440 --> 00:22:41,320 THIS RESEARCH SHOWN HERE 581 00:22:41,320 --> 00:22:43,680 EXAMINED THE DEMOGRAPHIC 582 00:22:43,680 --> 00:22:46,560 CHARACTERISTICS OF OVER 2.5 583 00:22:46,560 --> 00:22:48,200 MILLION SCIENTIFIC PAPERS 584 00:22:48,200 --> 00:22:51,000 WRITTEN BY U.S.-BASED AUTHORS 585 00:22:51,000 --> 00:22:53,400 BETWEEN 1985 AND 2008. 586 00:22:53,400 --> 00:22:57,000 AND THE FUNNY THING SHEAR THAT 587 00:22:57,000 --> 00:22:58,840 GREATER ETHNIC HOM OVALLY IS 588 00:22:58,840 --> 00:23:03,000 ASSOCIATED WITH PUBLICATION IN 589 00:23:03,000 --> 00:23:05,240 LOWERING JOURNALS AND FEWER 590 00:23:05,240 --> 00:23:06,640 CITATIONS, WHEREAS PAPERS WITH 591 00:23:06,640 --> 00:23:08,960 AUTHORS FROM GREATER NUMBER OF 592 00:23:08,960 --> 00:23:11,120 LOCATIONS, SO GREATER GEOGRAPHIC 593 00:23:11,120 --> 00:23:13,320 DIVERSITY, AND LONGER REFERENCE 594 00:23:13,320 --> 00:23:14,120 LIST. 595 00:23:14,120 --> 00:23:15,280 SO GREATER INFORMATION 596 00:23:15,280 --> 00:23:16,520 DIVERSITY, TEND TO GET PUBLISHED 597 00:23:16,520 --> 00:23:19,240 IN HIGHER-IMPACT JOURNALS AND 598 00:23:19,240 --> 00:23:22,120 RECEIVE MORE CITATIONS. 599 00:23:22,120 --> 00:23:24,560 NEXT SLIDE, PLEASE. 600 00:23:24,560 --> 00:23:28,840 >> SORRY TO INTERRUPT, DOCTOR. 601 00:23:28,840 --> 00:23:29,680 PLEASE PACE DOWN A LITTLE BIT 602 00:23:29,680 --> 00:23:32,080 FOR THE INTERPRETATION. 603 00:23:32,080 --> 00:23:32,520 THANK YOU. 604 00:23:32,520 --> 00:23:33,720 >> CHRISTY LEY: ABSOLUTELY. 605 00:23:33,720 --> 00:23:34,680 THANK YOU. 606 00:23:34,680 --> 00:23:38,120 AND SO DESPITE THESE ADVANTAGES 607 00:23:38,120 --> 00:23:40,600 OF DIVERSITY, THEY REMAIN 608 00:23:40,600 --> 00:23:41,320 VARIOUS BARRIERS AS THIS GROUP 609 00:23:41,320 --> 00:23:44,840 IS WELL AWARE FOR HAVING UNDER 610 00:23:44,840 --> 00:23:47,880 REPRESENTED GROUPS ACROSS THE 611 00:23:47,880 --> 00:23:48,360 CAREER SPECTRUM. 612 00:23:48,360 --> 00:23:51,400 WHILE UNDER REPRESENTED GROUPS 613 00:23:51,400 --> 00:23:53,760 TEND TO MAKE GREATER 614 00:23:53,760 --> 00:23:55,360 CONTRIBUTIONS TO SCIENTIFIC 615 00:23:55,360 --> 00:23:58,000 INNOVATION OR CONTRIBUTE AT A 616 00:23:58,000 --> 00:23:59,640 HIGHER RATE, RATHER THAN THE 617 00:23:59,640 --> 00:24:01,760 MAJORITY, THEIR CONTRIBUTIONS 618 00:24:01,760 --> 00:24:06,040 TEND TO BE UNDER VALUED AND ALSO 619 00:24:06,040 --> 00:24:10,120 RESULT IN EARNING LESS 620 00:24:10,120 --> 00:24:11,920 INFLUENTIALAL POSITIONS OVERALL, 621 00:24:11,920 --> 00:24:14,080 WITHIN ACADEMIA AND RESEARCH AND 622 00:24:14,080 --> 00:24:17,720 THAT CONTINUES ACROSS THE CAREER 623 00:24:17,720 --> 00:24:18,000 TRAJECTORY. 624 00:24:18,000 --> 00:24:24,360 NEXT SLIDE, PLEASE. 625 00:24:24,360 --> 00:24:28,240 SO, IN SHORT, WE ARE NOT 626 00:24:28,240 --> 00:24:30,160 UTILIZING OUR FULL TALENT POOL. 627 00:24:30,160 --> 00:24:32,200 AND IN PARTICULAR, THIS HAS AN 628 00:24:32,200 --> 00:24:34,000 EFFECT ON SCIENTIFIC ADVANCEMENT 629 00:24:34,000 --> 00:24:37,280 AS SHOWN HERE, WHICH IS THE 630 00:24:37,280 --> 00:24:40,880 GRAPH IS SHOWING THERE IS A 631 00:24:40,880 --> 00:24:41,520 RELATIONSHIP BETWEEN INDIVIDUALS 632 00:24:41,520 --> 00:24:43,520 IDENTITIES AND THEIR TOPIC 633 00:24:43,520 --> 00:24:43,760 CHOICE. 634 00:24:43,760 --> 00:24:46,600 AND DEFINING FROM THIS RESEARCH, 635 00:24:46,600 --> 00:24:48,880 REALLY THERE WOULD BE GREATER 636 00:24:48,880 --> 00:24:50,280 CONTRIBUTIONS TO VARIOUS AREAS 637 00:24:50,280 --> 00:24:52,120 SUCH AS PUBLIC HEALTH AND 638 00:24:52,120 --> 00:24:55,400 RESEARCH ON MINORITIES, IF UNDER 639 00:24:55,400 --> 00:24:58,120 REPRESENTED GROUPS WERE BETTER 640 00:24:58,120 --> 00:25:00,120 REPRESENTED IN SCIENCE. 641 00:25:00,120 --> 00:25:03,200 NEXT SLIDE, PLEASE. 642 00:25:03,200 --> 00:25:04,800 THIS SHOULD LOOK FAMILIAR. 643 00:25:04,800 --> 00:25:07,800 ANOTHER EXTENSION OF SOME OF THE 644 00:25:07,800 --> 00:25:09,000 WORK THAT DR. SUJATA BARDHAM HAD 645 00:25:09,000 --> 00:25:10,120 SHOWN AT THE BEGINNING AND THIS 646 00:25:10,120 --> 00:25:14,440 IS SHOWING THE RELATIONSHIP, 647 00:25:14,440 --> 00:25:17,360 PERCENTAGE OF BY RACE AND 648 00:25:17,360 --> 00:25:18,480 ETHNICITY OF RO1 EQUIVALENT 649 00:25:18,480 --> 00:25:18,880 GRANTEES. 650 00:25:18,880 --> 00:25:20,600 SO SHE HAD SHOWN THE APPLICANTS. 651 00:25:20,600 --> 00:25:24,000 HERE THESE ARE THE GRANTEES IN 652 00:25:24,000 --> 00:25:25,160 BLUE. 653 00:25:25,160 --> 00:25:26,240 THE STEM DOCTORAL WORKFORCE IN 654 00:25:26,240 --> 00:25:29,400 YELLOW AND THE U.S. POPULATION 655 00:25:29,400 --> 00:25:30,800 IN GREEN. 656 00:25:30,800 --> 00:25:34,120 AND HERE WE SEE A SOMEWHAT 657 00:25:34,120 --> 00:25:35,560 DISPROPORTIONATELY HIGH NUMBER 658 00:25:35,560 --> 00:25:38,120 OF WHITE AND ASIAN SCIENTISTS 659 00:25:38,120 --> 00:25:41,680 RECEIVING RO1s RELATIVE TO THE 660 00:25:41,680 --> 00:25:42,600 U.S. POPULATION WHILE THE 661 00:25:42,600 --> 00:25:44,720 REVERSE IS TRUE FOR HISPANIC OR 662 00:25:44,720 --> 00:25:48,440 LATINO AND BLACK OR 663 00:25:48,440 --> 00:25:50,200 AFRICAN-AMERICAN SCIENTISTS. 664 00:25:50,200 --> 00:25:54,400 NEXT SLIDE, PLEASE. 665 00:25:54,400 --> 00:25:56,920 AND IF WE LOOK AT THE OVERALL 666 00:25:56,920 --> 00:25:59,080 SCIENTIFIC WORKFORCE, THE 667 00:25:59,080 --> 00:26:00,880 REPRESENTATION OF WOMEN AND 668 00:26:00,880 --> 00:26:02,560 GROUPS UNREPRESENTED IN SCIENCE 669 00:26:02,560 --> 00:26:06,360 DIMINISHES EVEN MORE AS WE GO 670 00:26:06,360 --> 00:26:06,920 ACROSS THE CAREER TRAJECTORY 671 00:26:06,920 --> 00:26:10,120 FROM INSTRUCTOR THROUGH 672 00:26:10,120 --> 00:26:14,000 DEPARTMENT CHAIR ON THE RIGHT. 673 00:26:14,000 --> 00:26:15,000 NEXT SLIDE. 674 00:26:15,000 --> 00:26:16,600 SO, GIVEN THE VALUE OF DIVERSITY 675 00:26:16,600 --> 00:26:18,760 AND ITS LACK OF BEING FULLY 676 00:26:18,760 --> 00:26:19,800 REALIZED, I NOW WOULD LIKE TO 677 00:26:19,800 --> 00:26:24,000 TURN TO, WHAT IS COSWD'S 678 00:26:24,000 --> 00:26:25,880 STRATEGY FOR ADDRESSING 679 00:26:25,880 --> 00:26:26,880 DIVERSITY? 680 00:26:26,880 --> 00:26:28,960 NEXT SLIDE. 681 00:26:28,960 --> 00:26:31,920 SO WE RECENTLY WENT THROUGH THE 682 00:26:31,920 --> 00:26:33,480 PROCESS OF ISSUING OUR NEW 683 00:26:33,480 --> 00:26:34,960 STRATEGIC PLAN IN SPRING OF THIS 684 00:26:34,960 --> 00:26:36,720 YEAR, AND I'LL TOUCH ON THAT IN 685 00:26:36,720 --> 00:26:38,840 A MINUTE. 686 00:26:38,840 --> 00:26:40,360 SO CAPTURED IN THAT PROCESS AT 687 00:26:40,360 --> 00:26:41,880 THE HIGHEST LEVEL IS OUR VISION, 688 00:26:41,880 --> 00:26:46,120 WHICH IS TO ENABLE NIH AND 689 00:26:46,120 --> 00:26:47,040 NIH-FUNDED INSTITUTIONS TO 690 00:26:47,040 --> 00:26:48,400 BENEFIT FROM A FULL RANGE OF 691 00:26:48,400 --> 00:26:53,720 TALENT, FOSTERING CREATIVITY AND 692 00:26:53,720 --> 00:26:54,200 INNOVATION IN SCIENCE. 693 00:26:54,200 --> 00:26:56,240 AND WE DO THAT BY FOCUSING ON 694 00:26:56,240 --> 00:27:00,240 OUR MISSION WHICH IS TO BE THE 695 00:27:00,240 --> 00:27:01,320 NIH THOUGHT LEADER IN THE 696 00:27:01,320 --> 00:27:04,080 SCIENCE OF SCIENTIFIC WORKFORCE 697 00:27:04,080 --> 00:27:07,240 DIVERSITY, USING EVIDENCE-BASED 698 00:27:07,240 --> 00:27:09,360 APPROACHES TO CATALYZE CULTURES 699 00:27:09,360 --> 00:27:11,760 OF INCLUSIVE EXCELLENCE. 700 00:27:11,760 --> 00:27:19,800 NEXT SLIDE, PLEASE. 701 00:27:19,800 --> 00:27:23,080 SO WE HAVE PURSUED THIS 702 00:27:23,080 --> 00:27:23,800 VISION/MISSION AND THE GOALS 703 00:27:23,800 --> 00:27:27,960 THAT I'LL DISCUSS IN A MINUTE 704 00:27:27,960 --> 00:27:30,440 HERE, BY VERY RIGOROUS PROCESS. 705 00:27:30,440 --> 00:27:33,080 ITSELF WAS REALLY EVIDENCE-BASED 706 00:27:33,080 --> 00:27:35,520 TO DEVELOP THE PLANS THROUGH 707 00:27:35,520 --> 00:27:37,720 SEEKING INPUT FROM INTERNAL AND 708 00:27:37,720 --> 00:27:40,320 EXTERNAL STAKEHOLDERS, THROUGH A 709 00:27:40,320 --> 00:27:41,520 VARIETY OF METHODOLOGIES, 710 00:27:41,520 --> 00:27:44,200 INCLUDING GROUP DISCUSSIONS AND 711 00:27:44,200 --> 00:27:45,040 INDIVIDUAL VIEWS, INCLUDING 712 00:27:45,040 --> 00:27:47,920 THOSE WHO HAD A DIRECT DEIA 713 00:27:47,920 --> 00:27:49,720 FOCUS AS WELL AS THOSE IN MORE 714 00:27:49,720 --> 00:27:52,160 GENERAL LEADERSHIP ROLES TO 715 00:27:52,160 --> 00:27:54,080 UNDERSTAND THE GAPS. 716 00:27:54,080 --> 00:27:57,000 NEXT SLIDE, PLEASE. 717 00:27:57,000 --> 00:27:59,640 AND THEN WE FOCUS ON THESE THREE 718 00:27:59,640 --> 00:28:02,120 EVIDENCE-BASED GOALS TO PURSUE 719 00:28:02,120 --> 00:28:03,480 OUR MISSION. 720 00:28:03,480 --> 00:28:06,160 BUILDING THE EVIDENCE BY USING 721 00:28:06,160 --> 00:28:07,640 EXISTING RESEARCH INSIGHTS AND 722 00:28:07,640 --> 00:28:11,000 ALSO NIH AS A TEST BED FOR 723 00:28:11,000 --> 00:28:12,320 INNOVATIVE SCIENTIFIC PROGRAMS 724 00:28:12,320 --> 00:28:14,920 TO ENHANCE DEIA. 725 00:28:14,920 --> 00:28:19,560 TWO, DISSEMINATING THE EVIDENCE 726 00:28:19,560 --> 00:28:21,880 BY -- THROUGH WORK WITHIN THE 727 00:28:21,880 --> 00:28:24,160 BIOMEDICAL SCIENTIFIC COMMUNITY 728 00:28:24,160 --> 00:28:27,040 AT LARGE FROM TRAINEES TO 729 00:28:27,040 --> 00:28:29,080 ESTABLISHED TENURED SCIENTISTS. 730 00:28:29,080 --> 00:28:32,200 AND ACTING ON THE EVIDENCE BY 731 00:28:32,200 --> 00:28:33,240 ADVANCING INTEGRATED 732 00:28:33,240 --> 00:28:36,600 INSTITUTION-WIDE SYSTEMS TO 733 00:28:36,600 --> 00:28:38,000 ADDRESS VARIOUS AREAS OF 734 00:28:38,000 --> 00:28:41,680 DIVERSITY, INCLUDING ADDRESSING 735 00:28:41,680 --> 00:28:43,480 BIAS, EQUITY, MENTORING AND 736 00:28:43,480 --> 00:28:44,920 WORK-LIFE ISSUES. 737 00:28:44,920 --> 00:28:47,400 AND ALSO OF THAT REQUIRES AN 738 00:28:47,400 --> 00:28:48,760 UNDERSTANDING OF WHAT IS 739 00:28:48,760 --> 00:28:50,400 EFFECTIVE AND UNDERSTANDING OF 740 00:28:50,400 --> 00:28:52,160 HOW TO SCALE THAT UP. 741 00:28:52,160 --> 00:28:56,160 SO WITH THAT IN MIND, I'D LIKE 742 00:28:56,160 --> 00:28:59,600 TO NOW ON THE NEXT SLIDE MOVE TO 743 00:28:59,600 --> 00:29:02,000 DISCUSSING THREE OF OUR 744 00:29:02,000 --> 00:29:04,560 CROSS-CUTTING STRATEGIES FOR 745 00:29:04,560 --> 00:29:05,920 PURSUING THOSE GOALS. 746 00:29:05,920 --> 00:29:08,640 AND THEN I'LL FOCUS ON HOW WE 747 00:29:08,640 --> 00:29:11,360 HAVE GONE ABOUT OPERATIONALIZING 748 00:29:11,360 --> 00:29:11,560 THOSE. 749 00:29:11,560 --> 00:29:14,120 SO, THREE CROSS-CUTTING 750 00:29:14,120 --> 00:29:16,480 STRATEGIES. 751 00:29:16,480 --> 00:29:17,000 COLLABORATION INTERNAL AND 752 00:29:17,000 --> 00:29:17,280 EXTERNAL. 753 00:29:17,280 --> 00:29:19,680 WE ARE A SMALL OFFICE AND AS I 754 00:29:19,680 --> 00:29:22,120 MENTIONED EARLIER, WE DO OUR 755 00:29:22,120 --> 00:29:23,720 WORK THROUGH EFFECTIVELY 756 00:29:23,720 --> 00:29:25,720 COLLABORATING WITH OTHERS BOTH 757 00:29:25,720 --> 00:29:26,360 INTERNAL AND EXTERNAL. 758 00:29:26,360 --> 00:29:28,400 THE SECOND IS THROUGH 759 00:29:28,400 --> 00:29:33,040 ACCOUNTABILITY WITH A FOCUS ON 760 00:29:33,040 --> 00:29:35,040 COLLABORATING IN A WAY THAT 761 00:29:35,040 --> 00:29:35,680 HELPS TO ESTABLISH PRACTICES AND 762 00:29:35,680 --> 00:29:37,560 METRICS TO HELP SUPPORT LEADERS 763 00:29:37,560 --> 00:29:39,120 IN CREATING AND MAINTAINING 764 00:29:39,120 --> 00:29:42,120 THESE INCLUSIVE CULTURES. 765 00:29:42,120 --> 00:29:45,680 AND FINALLY, AND MOST DIRECTLY 766 00:29:45,680 --> 00:29:48,760 RELATING TO SUPPORTING 767 00:29:48,760 --> 00:29:49,520 EVIDENCE-BASED EFFORT IS 768 00:29:49,520 --> 00:29:51,800 EVALUATION WHEREBY WE ARE 769 00:29:51,800 --> 00:29:55,720 FOCUSED ON CONDUCTING 770 00:29:55,720 --> 00:29:56,280 ASSESSMENTS TOGETHER WITH 771 00:29:56,280 --> 00:29:57,960 OTHERS, AND ADVISING ON PROGRAM 772 00:29:57,960 --> 00:30:00,560 EFFECTIVENESS TO INFORM THE 773 00:30:00,560 --> 00:30:03,200 STRATEGIES, PRACTICES AND 774 00:30:03,200 --> 00:30:04,120 IMPROVEMENTS TO PROGRAMS. 775 00:30:04,120 --> 00:30:08,520 NEXT SLIDE, PLEASE. 776 00:30:08,520 --> 00:30:10,120 AND JUST BRIEFLY IN TERMS OF 777 00:30:10,120 --> 00:30:13,680 SCOPE, WE ARE DOING THIS BOTH 778 00:30:13,680 --> 00:30:17,440 INTERNALLY AT NIH, BOTH IN NIH'S 779 00:30:17,440 --> 00:30:18,680 INTRAMURAL AND EXTRAMURAL 780 00:30:18,680 --> 00:30:22,120 RESEARCH PROGRAMS, AS WELL AS IN 781 00:30:22,120 --> 00:30:24,840 THE EXTERNAL BIOMEDICAL 782 00:30:24,840 --> 00:30:25,120 COMMUNITY. 783 00:30:25,120 --> 00:30:26,840 AND AS WELL AS ACROSS THE TALENT 784 00:30:26,840 --> 00:30:30,120 LIFE CYCLE FROM RECRUITMENT 785 00:30:30,120 --> 00:30:33,040 THROUGH RETENTION. 786 00:30:33,040 --> 00:30:35,000 NEXT SLIDE, PLEASE. 787 00:30:35,000 --> 00:30:38,120 SO I NOW WANTED TO SPEND A FEW 788 00:30:38,120 --> 00:30:42,120 MINUTES FOCUSING ON THE AREAS TO 789 00:30:42,120 --> 00:30:44,600 FURTHER ENHANCE DEIA BY FOCUSING 790 00:30:44,600 --> 00:30:47,040 ON AREAS THAT WE HAVE PURSUED TO 791 00:30:47,040 --> 00:30:49,880 HELP BUILD, DISSEMINATE AND ACT 792 00:30:49,880 --> 00:30:56,280 ON THE EVIDENCE. 793 00:30:56,280 --> 00:30:58,120 TO BUILD THE EVIDENCE, COSWD IS 794 00:30:58,120 --> 00:30:59,840 COLLABORATING ACROSS NIH TO 795 00:30:59,840 --> 00:31:01,800 PILOT PROGRAMS THAT ENCOURAGE 796 00:31:01,800 --> 00:31:02,200 GREATER INCLUSION. 797 00:31:02,200 --> 00:31:05,360 AS WE ARE A SMALL OFFICE, ONE 798 00:31:05,360 --> 00:31:07,040 THING WE ARE DOING IS WORKING 799 00:31:07,040 --> 00:31:10,120 WITH OUR DIVERSITY CATALYST WHO 800 00:31:10,120 --> 00:31:12,400 ARE REPRESENTATIVES ACROSS NIH'S 801 00:31:12,400 --> 00:31:15,800 ICs WHO ARE TESTING 802 00:31:15,800 --> 00:31:18,120 THEMSELVES. 803 00:31:18,120 --> 00:31:18,760 EVIDENCE-BASED APPROACHES WITHIN 804 00:31:18,760 --> 00:31:19,800 THEIR ICs AND BRINGING THEM 805 00:31:19,800 --> 00:31:21,320 TOGETHER FOR MEANINGFUL 806 00:31:21,320 --> 00:31:22,760 DISCUSSIONS ON WHAT IS EFFECTIVE 807 00:31:22,760 --> 00:31:23,200 AND WHERE THERE ARE 808 00:31:23,200 --> 00:31:25,840 OPPORTUNITIES FOR SCALING THAT 809 00:31:25,840 --> 00:31:26,120 UP. 810 00:31:26,120 --> 00:31:28,480 ANOTHER EXAMPLE IS OUR RECENT 811 00:31:28,480 --> 00:31:31,440 21ST CENTURY SCHOLARS PROGRAM 812 00:31:31,440 --> 00:31:32,680 WHICH IS IN THE EXTRAMURAL 813 00:31:32,680 --> 00:31:35,240 PROGRAM, THAT APPLIES A MODEL 814 00:31:35,240 --> 00:31:37,000 THAT WE HAVE PURSUED IN THE 815 00:31:37,000 --> 00:31:39,320 INTRAMURAL PROGRAM WITH OUR 816 00:31:39,320 --> 00:31:40,240 DISTINGUISHED SCHOLARS PROGRAM 817 00:31:40,240 --> 00:31:42,880 WHEREBY WE FOCUS ON USING 818 00:31:42,880 --> 00:31:45,760 EVIDENCE THAT SHOWS THAT A 819 00:31:45,760 --> 00:31:46,760 COVERT MODEL OF RECRUITMENT AS 820 00:31:46,760 --> 00:31:48,640 WELL AS MENTORING CAN BE 821 00:31:48,640 --> 00:31:50,600 EFFECTIVE TO ENHANCE DEIA. 822 00:31:50,600 --> 00:31:55,320 I JUST CAME FROM DISCUSSING SOME 823 00:31:55,320 --> 00:31:55,840 OF COSWD'S STRATEGIC PLANS 824 00:31:55,840 --> 00:31:57,560 BEFORE THIS PRESENTATION BECAUSE 825 00:31:57,560 --> 00:31:58,160 THE INAUGURAL CLASS IS 826 00:31:58,160 --> 00:31:59,680 GRADUATING TODAY. 827 00:31:59,680 --> 00:32:02,080 IT'S A VERY EXCITING TIME AND A 828 00:32:02,080 --> 00:32:03,960 PROGRAM OUR OFFICE HAS GIVEN A 829 00:32:03,960 --> 00:32:04,520 LOT OF ATTENTION TO OVER THE 830 00:32:04,520 --> 00:32:06,120 COURSE OF THIS YEAR. 831 00:32:06,120 --> 00:32:07,240 NEXT SLIDE, PLEASE. 832 00:32:07,240 --> 00:32:10,120 TO DISSEMINATE THE EVIDENCE, WE 833 00:32:10,120 --> 00:32:12,560 ARE REALLY FOCUSED ON SHARING 834 00:32:12,560 --> 00:32:15,040 INSIGHTS ACROSS THE BIOMEDICAL 835 00:32:15,040 --> 00:32:17,560 COMMUNITY THROUGH VARIOUS 836 00:32:17,560 --> 00:32:18,080 COMMUNICATION CHANNELS. 837 00:32:18,080 --> 00:32:20,400 AND ONE OF THE MOST PROMINENT 838 00:32:20,400 --> 00:32:22,120 AREAS OR EFFORTS THAT WE HAVE 839 00:32:22,120 --> 00:32:23,160 ENGAGED IN OVER THE PAST YEAR 840 00:32:23,160 --> 00:32:24,840 HAS BEEN OUR SCIENTIFIC 841 00:32:24,840 --> 00:32:27,560 WORKFORCE DIVERSITY SEMINAR 842 00:32:27,560 --> 00:32:29,640 SERIES, WHICH BEGAN LAST 843 00:32:29,640 --> 00:32:30,120 SEPTEMBER. 844 00:32:30,120 --> 00:32:33,240 AND HERE WE HOST A RENOWNED 845 00:32:33,240 --> 00:32:34,560 RESEARCHER ON THE LATEST 846 00:32:34,560 --> 00:32:37,280 RESEARCH ON VARIOUS DEIA ISSUES. 847 00:32:37,280 --> 00:32:40,120 SO I'D ENCOURAGE YOU TO LOOK AT 848 00:32:40,120 --> 00:32:42,120 OUR WEBSITE AND TAKE A LOOK AT 849 00:32:42,120 --> 00:32:43,840 OPPORTUNITIES FOR ATTENDING 850 00:32:43,840 --> 00:32:46,040 THESE, WHICH ARE APPROXIMATELY 851 00:32:46,040 --> 00:32:48,200 ON A QUARTERLY BASIS. 852 00:32:48,200 --> 00:32:50,160 AND THEN WE ALSO ISSUE A 853 00:32:50,160 --> 00:32:54,120 BIWEEKLY BLOG, QUARTERLY 854 00:32:54,120 --> 00:32:55,280 NEWSLETTER AND PUBLISH VARIOUS 855 00:32:55,280 --> 00:32:57,000 MANUSCRIPTS. 856 00:32:57,000 --> 00:32:59,960 AGAIN, YOU CAN ACCESS THOSE OR 857 00:32:59,960 --> 00:33:02,440 GET ON LISTSERVS THROUGH OUR 858 00:33:02,440 --> 00:33:03,040 WEBSITE. 859 00:33:03,040 --> 00:33:03,600 NEXT SLIDE, PLEASE. 860 00:33:03,600 --> 00:33:08,880 AND FINALLY, TO ACT ON THE 861 00:33:08,880 --> 00:33:11,440 EVIDENCE, WE ARE ADVANCING 862 00:33:11,440 --> 00:33:13,400 SUCCESSFUL PROGRAMS THAT WE HAVE 863 00:33:13,400 --> 00:33:15,160 EITHER IDENTIFIED IN THAT FIRST 864 00:33:15,160 --> 00:33:18,160 PORTION OF BUILDING THE 865 00:33:18,160 --> 00:33:19,600 EVIDENCE, BUT OF COURSE THESE 866 00:33:19,600 --> 00:33:21,280 ARE CYCLICAL PROCESSES SO WE MAY 867 00:33:21,280 --> 00:33:22,960 HAVE EVIDENCE ALREADY OF VARIOUS 868 00:33:22,960 --> 00:33:24,800 ESTABLISHED PROGRAMS WE ARE NOW 869 00:33:24,800 --> 00:33:26,640 MOVING FORWARD ON ACTING ON THE 870 00:33:26,640 --> 00:33:28,160 EVIDENCE FOR. 871 00:33:28,160 --> 00:33:31,480 AND SOME OF THESE THAT I'D LIKE 872 00:33:31,480 --> 00:33:36,480 TO HIGHLIGHT ARE THE RESEARCH 873 00:33:36,480 --> 00:33:41,240 PROTOCOL WHICH IS AN APPROACH 874 00:33:41,240 --> 00:33:46,120 WHERE WE SYSTEMATICALLY IDENTIFY 875 00:33:46,120 --> 00:33:47,720 DIVERSE CANDIDATES FOR 876 00:33:47,720 --> 00:33:48,520 SCIENTIFIC POSITIONS. 877 00:33:48,520 --> 00:33:50,280 AND WE HAVE HISTORICALLY DONE 878 00:33:50,280 --> 00:33:54,400 THIS FOR MANY YEARS, OVER 5 879 00:33:54,400 --> 00:33:54,600 YEARS. 880 00:33:54,600 --> 00:33:56,160 AND THIS HAS HELPED BROADEN THE 881 00:33:56,160 --> 00:33:57,200 DIVERSITY OF CANDIDATES 882 00:33:57,200 --> 00:34:01,520 CONSIDERED FOR NIH POSITIONS. 883 00:34:01,520 --> 00:34:03,400 BECAUSE WHY ARE A SMALL OFFICE, 884 00:34:03,400 --> 00:34:04,600 WE CAN HANDLE A PARTICULAR 885 00:34:04,600 --> 00:34:05,840 PORTION OF THOSE AT NIH. 886 00:34:05,840 --> 00:34:08,640 WE HAD ONE UP TOW TWO ANALYSTS 887 00:34:08,640 --> 00:34:09,800 WORKING ON THIS AT A TIME. 888 00:34:09,800 --> 00:34:11,800 SO LAST YEAR, WE LAUNCHED A 889 00:34:11,800 --> 00:34:13,920 SCALE UP INITIATIVE WHEREBY WE 890 00:34:13,920 --> 00:34:17,160 TRAINED RECRUITMENT STRATEGISTS 891 00:34:17,160 --> 00:34:21,040 ACROSS NIH ON THE PROTOCOL AND 892 00:34:21,040 --> 00:34:22,880 THEY ARE NOW IMPLEMENTING THIS 893 00:34:22,880 --> 00:34:24,000 TO HELP ENHANCE DIVERSITY AMONG 894 00:34:24,000 --> 00:34:26,200 THEIR IC'S POSITIONS AND IN 895 00:34:26,200 --> 00:34:28,160 FACT, OVER JUST THE PAST COUPLE 896 00:34:28,160 --> 00:34:29,560 OF WEEKS, INCLUDING THIS WEEK, 897 00:34:29,560 --> 00:34:31,720 WE ARE HOSTING OFFICE HOURS WITH 898 00:34:31,720 --> 00:34:34,600 ALL THE RECRUITMENT STRATEGISTS 899 00:34:34,600 --> 00:34:36,080 ACROSS NIH TO HELP ADDRESS 900 00:34:36,080 --> 00:34:37,080 QUESTIONS, HEAR WHERE THEY ARE 901 00:34:37,080 --> 00:34:38,240 HAVING CHALLENGES, WHERE THEY 902 00:34:38,240 --> 00:34:39,880 ARE HAVING SUCCESSING TO SHARE 903 00:34:39,880 --> 00:34:43,120 BEST PRACTICES AND SO IT'S BEEN 904 00:34:43,120 --> 00:34:46,000 A VERY ROUTINE TIME TO FURTHER 905 00:34:46,000 --> 00:34:48,080 MOVE THAT INITIATIVE FORWARD. 906 00:34:48,080 --> 00:34:51,040 AND THEN A COUPLE OF THE OTHER 907 00:34:51,040 --> 00:34:54,040 AREAS ARE, ONE THAT WAS 908 00:34:54,040 --> 00:34:55,160 MENTIONED, WE ARE VERY EXCITED 909 00:34:55,160 --> 00:34:57,320 TO HAVE THE DOWN SYNDROME 910 00:34:57,320 --> 00:34:58,040 COMMUNITY INVOLVED WITH AND 911 00:34:58,040 --> 00:35:01,720 INTERESTED IN, WHICH IS OUR DEIA 912 00:35:01,720 --> 00:35:05,160 ADMINISTRATIVE SUPPLEMENT 913 00:35:05,160 --> 00:35:06,120 FOCUSED ON SUCCESSFUL MENTORING 914 00:35:06,120 --> 00:35:10,120 AND DEIA PRACTICES, AS WELL AS A 915 00:35:10,120 --> 00:35:12,200 PRIZED COMPETITION THAT WOULD BE 916 00:35:12,200 --> 00:35:15,000 RELEASING SOON THAT HAVE BEEN 917 00:35:15,000 --> 00:35:16,720 RFI RECENTLY FOR 918 00:35:16,720 --> 00:35:19,480 INSTITUTIONALIZED AND DEIA. 919 00:35:19,480 --> 00:35:22,000 AGAIN, THESE PROVIDE EXAMPLES AT 920 00:35:22,000 --> 00:35:23,040 DIFFERENT LEVELS WITHIN NIH AND 921 00:35:23,040 --> 00:35:25,760 CAN BE EXPANDED OUT. 922 00:35:25,760 --> 00:35:27,480 SOME AT THE INDIVIDUAL LEVEL AND 923 00:35:27,480 --> 00:35:28,960 SOME AT THE INSTITUTIONAL LEVEL, 924 00:35:28,960 --> 00:35:32,600 BUT THE COMMONALTY AMONG THEM IS 925 00:35:32,600 --> 00:35:34,240 THAT THEY ARE REALLY 926 00:35:34,240 --> 00:35:34,880 OPPORTUNITIES FOR ONES THAT CAN 927 00:35:34,880 --> 00:35:39,200 BE APPLIED TO HELP FURTHER 928 00:35:39,200 --> 00:35:41,200 SUPPORT DEIA WITHIN THE DOWN 929 00:35:41,200 --> 00:35:45,040 SYNDROME RESEARCH COMMUNITY. 930 00:35:45,040 --> 00:35:47,560 NEXT SLIDE, PLEASE. 931 00:35:47,560 --> 00:35:50,040 AS TIME PERMITS, I WILL BE GLAD 932 00:35:50,040 --> 00:35:51,120 TO ADDRESS QUESTIONS AT THE END 933 00:35:51,120 --> 00:35:53,360 BUT I'D LIKE TO ENCOURAGE YOU TO 934 00:35:53,360 --> 00:35:55,320 CONNECT WITH US. 935 00:35:55,320 --> 00:35:58,120 WE HAVE SOCIAL MEDIA ACCOUNTS, 936 00:35:58,120 --> 00:35:58,720 FOR ANY FURTHER UPDATES ON THE 937 00:35:58,720 --> 00:36:01,320 VARIOUS PROGRAMS THAT I 938 00:36:01,320 --> 00:36:02,760 MENTIONED. 939 00:36:02,760 --> 00:36:06,800 AND THEN THE FINAL SLIDE. 940 00:36:06,800 --> 00:36:07,720 THANK YOU VERY MUCH. 941 00:36:07,720 --> 00:36:09,040 >> THANK YOU VERY MUCH FOR YOUR 942 00:36:09,040 --> 00:36:12,760 VERY NICE OVERVIEW OF THE 943 00:36:12,760 --> 00:36:13,000 PROGRAM. 944 00:36:13,000 --> 00:36:14,000 PLEASE SAVE YOUR QUESTIONS AT 945 00:36:14,000 --> 00:36:17,000 THE END OF THIS SESSION. 946 00:36:17,000 --> 00:36:18,920 SO THE SECOND PART OF THIS 947 00:36:18,920 --> 00:36:21,400 SESSION IS FOCUSED ON 948 00:36:21,400 --> 00:36:24,000 NEUROSCIENCE WORKFORCE 949 00:36:24,000 --> 00:36:24,240 DIVERSITY. 950 00:36:24,240 --> 00:36:25,000 WE HAVE TWO SPEAKERS. 951 00:36:25,000 --> 00:36:31,520 FIRST ONE IS DR. MICHELLE 952 00:36:31,520 --> 00:36:34,120 JONES-LONDON SERVES AS CHIEF AT 953 00:36:34,120 --> 00:36:36,840 THE OFFICE OF PROGRAMS TO 954 00:36:36,840 --> 00:36:38,920 ENHANCE NEUROSCIENCE WORKFORCE 955 00:36:38,920 --> 00:36:42,240 DIVERSITY AT THE NATIONAL 956 00:36:42,240 --> 00:36:42,760 INSTITUTE OF NEUROLOGICAL 957 00:36:42,760 --> 00:36:43,360 DISORDERS AND STROKE. 958 00:36:43,360 --> 00:36:47,560 SHE IS ALSO THE CO-CHAIR FOR 959 00:36:47,560 --> 00:36:50,160 BOTH THE NIH BLUEPRINT AND NIH 960 00:36:50,160 --> 00:36:52,240 BRAIN INITIATIVE TRAINING 961 00:36:52,240 --> 00:36:54,120 INCLUSION AND EQUITY EFFORTS. 962 00:36:54,120 --> 00:36:56,120 DR. MICHELLE JONES-LONDON EARNED 963 00:36:56,120 --> 00:36:57,240 HER PH.D. IN NEUROSCIENCE FROM 964 00:36:57,240 --> 00:37:00,440 THE PENNSYLVANIA STATE 965 00:37:00,440 --> 00:37:03,800 UNIVERSITY COLLEGE OF MEDICINE. 966 00:37:03,800 --> 00:37:06,120 WELCOME DR. MICHELLE 967 00:37:06,120 --> 00:37:06,440 JONES-LONDON. 968 00:37:06,440 --> 00:37:08,920 >> MICHELLE JONES-LONDON: THANK 969 00:37:08,920 --> 00:37:09,760 YOU AND THANK YOU TO MY 970 00:37:09,760 --> 00:37:10,720 COLLEAGUE THAT JUST WENT BEFORE 971 00:37:10,720 --> 00:37:11,240 ME. 972 00:37:11,240 --> 00:37:13,080 A LOT OF THE THEMES YOU'LL HEAR 973 00:37:13,080 --> 00:37:17,200 ARE VERY SIMILAR IN TERMS OF 974 00:37:17,200 --> 00:37:18,960 POLICY AND PRACTICES. 975 00:37:18,960 --> 00:37:20,520 MY GOAL FOR YOU TODAY IS TO GIVE 976 00:37:20,520 --> 00:37:22,120 YOU SOME EXAMPLES OF PROGRAMS 977 00:37:22,120 --> 00:37:29,320 THAT WE ARE UTILIZING IN THE 978 00:37:29,320 --> 00:37:30,480 NEUROSCIENCE SPACE AND TO 979 00:37:30,480 --> 00:37:32,200 HOPEFULLY GIVE YOU A SENSE OF 980 00:37:32,200 --> 00:37:34,280 THINGS THAT CAN WORK. 981 00:37:34,280 --> 00:37:35,440 AND SOME OF THE THEM ARE SUPPORT 982 00:37:35,440 --> 00:37:36,600 IN TERMS OF FINANCIAL SUPPORT 983 00:37:36,600 --> 00:37:39,760 BUT A LOT OF IT IS OTHER THINGS 984 00:37:39,760 --> 00:37:41,120 AS WELL IN TERMS OF NETWORKING 985 00:37:41,120 --> 00:37:42,760 AND A SENSE OF COMMUNITY. 986 00:37:42,760 --> 00:37:46,880 SO NEXT SLIDE. 987 00:37:46,880 --> 00:37:49,560 I AM THE CHIEF OF OPEN. 988 00:37:49,560 --> 00:37:51,760 THAT'S THE ACRONYM WE USE FOR MY 989 00:37:51,760 --> 00:37:52,000 OFFICE. 990 00:37:52,000 --> 00:37:56,560 AND IT REALLY CONVEYS THE SENSE 991 00:37:56,560 --> 00:37:58,760 THAT THE MISSION IS TO OPEN 992 00:37:58,760 --> 00:38:00,400 ACCESS AND TO OPEN OPPORTUNITIES 993 00:38:00,400 --> 00:38:03,040 TO INCREASE THE REPRESENTATION 994 00:38:03,040 --> 00:38:06,480 OF ALL WHO ENGAGE IN RESEARCH. 995 00:38:06,480 --> 00:38:08,560 AND FROM MY INSTITUTE 996 00:38:08,560 --> 00:38:09,280 ESPECIALLY, NEUROSCIENCE 997 00:38:09,280 --> 00:38:09,560 RESEARCH. 998 00:38:09,560 --> 00:38:11,600 AND THE WAY WE THINK ABOUT THIS 999 00:38:11,600 --> 00:38:15,120 AS A STRATEGY IS REALLY FIRST 1000 00:38:15,120 --> 00:38:16,400 IDENTIFYING DIVERSE STUDENTS, 1001 00:38:16,400 --> 00:38:17,520 GUESTING PEOPLE EARLY ON INTO 1002 00:38:17,520 --> 00:38:19,320 THE TRAINING PATHWAY TO REALLY 1003 00:38:19,320 --> 00:38:22,240 RECRUIT THEM AND PREPARE THEM 1004 00:38:22,240 --> 00:38:23,560 FOR THE NEXT STEPS. 1005 00:38:23,560 --> 00:38:26,120 TO REALLY THEN DEVELOP 1006 00:38:26,120 --> 00:38:28,600 MEANINGFUL MENTORSHIP AND 1007 00:38:28,600 --> 00:38:31,600 CONNECT THEM TO THE NETWORKS. 1008 00:38:31,600 --> 00:38:34,240 THIS OLD STEREOTYPE OF PEOPLE 1009 00:38:34,240 --> 00:38:36,880 DOING SCIENCE ALONE AT A BENCH 1010 00:38:36,880 --> 00:38:38,880 IN A BASEMENT, REALLY ISN'T 1011 00:38:38,880 --> 00:38:39,120 PRACTICAL. 1012 00:38:39,120 --> 00:38:41,320 PEOPLE HAVE TO BE ENGAGED AND 1013 00:38:41,320 --> 00:38:45,040 FEEL A PART OF PROFESSIONAL AND 1014 00:38:45,040 --> 00:38:45,520 SCIENTIFIC NETWORKS. 1015 00:38:45,520 --> 00:38:49,360 THE OTHER THINGS IS, ONCE WE 1016 00:38:49,360 --> 00:38:51,040 BUILD THESE PROGRAMS ARE PUT ON 1017 00:38:51,040 --> 00:38:53,040 THE STREETS, OUR VARIOUS 1018 00:38:53,040 --> 00:38:53,360 SOLICITATIONS. 1019 00:38:53,360 --> 00:38:56,080 WE REALLY WANT PEOPLE TO BE 1020 00:38:56,080 --> 00:38:57,960 SUCCESSFUL, SO WE PROVIDE 1021 00:38:57,960 --> 00:39:01,200 RESOURCES FOR HELPING THEM TO 1022 00:39:01,200 --> 00:39:02,640 COMPETE SUCCESSFULLY AND ALSO 1023 00:39:02,640 --> 00:39:05,040 ELIMINATING BARRIERS. 1024 00:39:05,040 --> 00:39:06,800 AND THEN FINALLY, LOOKING ALWAYS 1025 00:39:06,800 --> 00:39:09,040 IN TERMS OF ASSESSING AND 1026 00:39:09,040 --> 00:39:10,040 EVALUATING WHAT IS WORKING AND 1027 00:39:10,040 --> 00:39:12,760 WHAT IS NOT WORKING. 1028 00:39:12,760 --> 00:39:14,480 SO MONITORING THE INVESTMENT. 1029 00:39:14,480 --> 00:39:16,920 THAT'S OUR VALUES, OUR 1030 00:39:16,920 --> 00:39:19,120 COMMISSION OUR VISION. 1031 00:39:19,120 --> 00:39:23,240 NEXT SLIDE. 1032 00:39:23,240 --> 00:39:25,880 AS I SAID BEFORE, NOTHING IS IN 1033 00:39:25,880 --> 00:39:26,160 ISOLATION. 1034 00:39:26,160 --> 00:39:29,160 IT REALLY IS A SIGNIFICANCE 1035 00:39:29,160 --> 00:39:31,960 STEMMATIC APPROACH, OF THINKING 1036 00:39:31,960 --> 00:39:33,520 ABOUT EVERYTHING THAT WE DO AT A 1037 00:39:33,520 --> 00:39:34,600 COUPLE OF DIFFERENT LEVELS. 1038 00:39:34,600 --> 00:39:36,160 THERE IS THE INDIVIDUAL LEVEL, 1039 00:39:36,160 --> 00:39:38,200 THE INSTITUTIONAL LEVEL, AND 1040 00:39:38,200 --> 00:39:41,120 THEN THIS BROADER SCIENTIFIC 1041 00:39:41,120 --> 00:39:42,160 COMMUNITY VERY SIMILAR TO WHAT 1042 00:39:42,160 --> 00:39:44,000 YOU'RE DOING TODAY IN THE 1043 00:39:44,000 --> 00:39:46,880 CONVERSATIONS THAT YOU HAD THESE 1044 00:39:46,880 --> 00:39:48,200 PAST DAYS. 1045 00:39:48,200 --> 00:39:49,560 WE'RE ALWAYS BETTER TOGETHER. 1046 00:39:49,560 --> 00:39:51,600 SO THINKING THE BROADER 1047 00:39:51,600 --> 00:39:54,120 SCIENTIFIC COMMUNITY AS WELL AS 1048 00:39:54,120 --> 00:39:56,120 THE INSTITUTIONAL LEVEL AND 1049 00:39:56,120 --> 00:39:58,520 INDIVIDUAL LEVEL. 1050 00:39:58,520 --> 00:40:00,560 NEXT SLIDE. 1051 00:40:00,560 --> 00:40:04,160 SO, I'M GOING TO GIVE YOU JUST 1052 00:40:04,160 --> 00:40:05,600 AN OVERVIEW OF OUR EXAMPLES OF 1053 00:40:05,600 --> 00:40:09,360 SOME OF THE PROGRAMS THAT WE 1054 00:40:09,360 --> 00:40:10,040 SUPPORT. 1055 00:40:10,040 --> 00:40:11,680 YOU CAN USE THESE AS EXAMPLES TO 1056 00:40:11,680 --> 00:40:13,400 THINK ABOUT WHAT CAN BE DONE AT 1057 00:40:13,400 --> 00:40:16,760 YOUR OWN INSTITUTIONS AND 1058 00:40:16,760 --> 00:40:18,120 RESEARCH ENVIRONMENTS. 1059 00:40:18,120 --> 00:40:19,080 BUT MAYBE YOU PERHAPS ARE 1060 00:40:19,080 --> 00:40:22,080 SOMEONE WHO CAN ACTUALLY BENEFIT 1061 00:40:22,080 --> 00:40:24,480 FROM SOME OF THESE PROGRAMS OR 1062 00:40:24,480 --> 00:40:26,200 YOU HAVE AMEN TEE. 1063 00:40:26,200 --> 00:40:28,120 SO I'LL GO FAST BECAUSE OF TIME. 1064 00:40:28,120 --> 00:40:32,680 I'LL MAKE SURE THAT I DON'T TALK 1065 00:40:32,680 --> 00:40:33,760 FAST. 1066 00:40:33,760 --> 00:40:35,680 JUST KNOW THE LINK AT THE 1067 00:40:35,680 --> 00:40:37,160 BOTTOM, YOU CAN ALWAYS FIND OUT 1068 00:40:37,160 --> 00:40:39,760 MORE INFORMATION ABOUT ALL OF 1069 00:40:39,760 --> 00:40:40,760 THESE SPECIFIC PROGRAMS. 1070 00:40:40,760 --> 00:40:44,160 THIS SLIDE IS TO REALLY 1071 00:40:44,160 --> 00:40:46,840 HIGHLIGHT FOR YOU THAT AT NINDS, 1072 00:40:46,840 --> 00:40:50,160 WE HAVE PROGRAMS THAT GO ACROSS 1073 00:40:50,160 --> 00:40:51,800 THE ENTIRE SPAN OF CAREER 1074 00:40:51,800 --> 00:40:52,040 STAGES. 1075 00:40:52,040 --> 00:40:54,600 SO WE ARE TALKING ABOUT AT THE 1076 00:40:54,600 --> 00:40:56,480 HIGH SCHOOL LEVEL WHEN PEOPLE 1077 00:40:56,480 --> 00:41:00,040 ARE THINKING ABOUT GETTING IN OR 1078 00:41:00,040 --> 00:41:01,720 PUTTING THEIR TOE INTO A 1079 00:41:01,720 --> 00:41:02,960 RESEARCH EXPERIENCE, ALL THE WAY 1080 00:41:02,960 --> 00:41:03,920 TO NEW FACULTY. 1081 00:41:03,920 --> 00:41:05,960 AND THE WAY THAT WE DO THAT IS 1082 00:41:05,960 --> 00:41:07,880 ONCE AGAIN, THROUGH INDIVIDUAL 1083 00:41:07,880 --> 00:41:11,080 PROGRAMS OR FELLOWSHIPS THAT GO 1084 00:41:11,080 --> 00:41:14,120 TO A STUDENT OR RESEARCHER BUT 1085 00:41:14,120 --> 00:41:16,280 THEN ALSO INSTITUTIONAL PROGRAMS 1086 00:41:16,280 --> 00:41:19,840 LIKE OUR R25s, OR T32s. 1087 00:41:19,840 --> 00:41:21,880 THIS SLIDE ALSO SHOWS YOU THAT 1088 00:41:21,880 --> 00:41:25,480 WE HAVE A HEALTHY INVESTMENT IN 1089 00:41:25,480 --> 00:41:26,440 CLINICIAN SCIENTISTS SO THESE 1090 00:41:26,440 --> 00:41:29,640 CAN BE MDs OR M.D., PH.D.s 1091 00:41:29,640 --> 00:41:36,120 THAT TEND TO TAKE A MORE 1092 00:41:36,120 --> 00:41:36,760 PATIENT-FOCUSED RESEARCH LENSE. 1093 00:41:36,760 --> 00:41:42,080 BUT THEN ALSO IN PURPLE, WE HAVE 1094 00:41:42,080 --> 00:41:45,480 SEVERAL DIVERSITY COMPELLING 1095 00:41:45,480 --> 00:41:46,120 INTERESTS PROGRAMS WHERE OUR 1096 00:41:46,120 --> 00:41:50,880 GOAL HERE IS TO REALLY BRING 1097 00:41:50,880 --> 00:41:53,240 DIVERSE UNDERREPRESENTED GROUPS 1098 00:41:53,240 --> 00:41:56,240 INTO THE RESEARCH ENTERPRISE, 1099 00:41:56,240 --> 00:41:57,720 PROVIDE MENTORSHIP AND PROVIDE 1100 00:41:57,720 --> 00:41:59,480 CAREER DEVELOPMENT SUPPORT. 1101 00:41:59,480 --> 00:42:02,080 SO NEXT SLIDE. 1102 00:42:02,080 --> 00:42:06,240 I'LL GO INTO A FEW OF THE 1103 00:42:06,240 --> 00:42:06,520 PROGRAMS. 1104 00:42:06,520 --> 00:42:09,640 STARTING WITH ONE THAT I WILL 1105 00:42:09,640 --> 00:42:13,560 SAY USUALLY THEY SAY AT NIH, 1106 00:42:13,560 --> 00:42:14,640 ONCE YOU HAVE SEEN ONE NIH 1107 00:42:14,640 --> 00:42:16,320 PROGRAM, YOU HAVE SEEN ONE NIH 1108 00:42:16,320 --> 00:42:16,560 PROGRAM. 1109 00:42:16,560 --> 00:42:18,200 BUT THE DIVERSITY SUPPLEMENT 1110 00:42:18,200 --> 00:42:22,120 PROGRAM IS FORTUNATELY SOMETHING 1111 00:42:22,120 --> 00:42:24,240 THAT ALL 27 INSTITUTES AND 1112 00:42:24,240 --> 00:42:26,120 CENTERS AT NIH SUPPORT. 1113 00:42:26,120 --> 00:42:28,800 AND WHAT THIS IS, IS AN 1114 00:42:28,800 --> 00:42:29,640 ADMINISTRATIVE SUPPLEMENT TO 1115 00:42:29,640 --> 00:42:30,720 BRING SOMEONE INTO YOUR LAB, IF 1116 00:42:30,720 --> 00:42:35,560 YOU HAVE AN NIH RESEARCH GRANT, 1117 00:42:35,560 --> 00:42:39,120 TO BE AN R GRANTEE AND YOU CAN 1118 00:42:39,120 --> 00:42:41,360 THEN FUND THIS TRAINEE IN YOUR 1119 00:42:41,360 --> 00:42:42,040 LAB. 1120 00:42:42,040 --> 00:42:43,560 WHEN I SAY TRAINEE, IT REALLY 1121 00:42:43,560 --> 00:42:46,560 IS, YOU CAN BRING A HIGH SCHOOL 1122 00:42:46,560 --> 00:42:47,640 STUDENT, UNDERGRAD, GRAD, 1123 00:42:47,640 --> 00:42:52,200 POSTDOC, EVEN IN SOME CASES, 1124 00:42:52,200 --> 00:42:54,320 JUNIOR FACULTY. 1125 00:42:54,320 --> 00:42:55,840 THE PROGRAM PROVIDES SUPPORT FOR 1126 00:42:55,840 --> 00:42:57,280 THEIR SALARY, A LITTLE BIT OF 1127 00:42:57,280 --> 00:43:00,560 RESEARCH COSTS BUT REALLY IT IS 1128 00:43:00,560 --> 00:43:03,040 A WAY TO HELP AND SUPPORT AND 1129 00:43:03,040 --> 00:43:06,560 GET THAT TRAINEE THEIR PILOT 1130 00:43:06,560 --> 00:43:08,080 DATA TO THEN BRIDGE TO THEIR OWN 1131 00:43:08,080 --> 00:43:09,040 INDIVIDUAL SUPPORT. 1132 00:43:09,040 --> 00:43:11,880 AND SO, THE FLAVOR OF THIS IS WE 1133 00:43:11,880 --> 00:43:13,760 HAVE A GENERIC, WHAT WE WOULD 1134 00:43:13,760 --> 00:43:15,120 CALL A PARENT DIVERSITY 1135 00:43:15,120 --> 00:43:17,320 SUPPLEMENT PROGRAM, BUT SEVERAL 1136 00:43:17,320 --> 00:43:20,560 AREAS OF RESEARCH ALSO HAVE 1137 00:43:20,560 --> 00:43:21,560 THEIR DEDICATED DOLLARS TO 1138 00:43:21,560 --> 00:43:24,680 SUPPORT THESE DIVERSITY 1139 00:43:24,680 --> 00:43:26,880 SUPPLEMENTS. 1140 00:43:26,880 --> 00:43:29,880 AND THAT'S THE HEEL, THE BRAIN 1141 00:43:29,880 --> 00:43:31,080 INITIATIVE AND THEN ALSO SMALLER 1142 00:43:31,080 --> 00:43:34,120 BUSINESS, THE SBIRs AND 1143 00:43:34,120 --> 00:43:36,520 STTRs ALSO OFFER FUNDING FOR 1144 00:43:36,520 --> 00:43:37,000 DIVERSITY SUPPLEMENTS. 1145 00:43:37,000 --> 00:43:40,880 SO REALLY FANTASTIC PROGRAM THAT 1146 00:43:40,880 --> 00:43:41,560 CAN BE REALLY STRATEGICALLY USED 1147 00:43:41,560 --> 00:43:44,800 IF YOU'RE THINKING ABOUT 1148 00:43:44,800 --> 00:43:45,720 INCREASING WORKFORCE DIVERSITY 1149 00:43:45,720 --> 00:43:50,120 IN YOUR RESEARCH OR LAB 1150 00:43:50,120 --> 00:43:51,040 ENVIRONMENTS. 1151 00:43:51,040 --> 00:43:52,000 NEXT SLIDE. 1152 00:43:52,000 --> 00:43:54,120 WE HAVE TALKED ABOUT THIS A FEW 1153 00:43:54,120 --> 00:43:56,080 TIMES IN TERMS OF PATHWAY. 1154 00:43:56,080 --> 00:44:00,480 AND WHAT DOES IT TAKE TO REALLY 1155 00:44:00,480 --> 00:44:01,600 GROW DIVERSE SCIENTIFIC 1156 00:44:01,600 --> 00:44:01,880 WORKFORCE? 1157 00:44:01,880 --> 00:44:03,880 AND ONE OF THE THINGS THAT I 1158 00:44:03,880 --> 00:44:06,680 WOULD SAY THAT WE HAVE SEEN OVER 1159 00:44:06,680 --> 00:44:09,040 AND OVER AGAIN IS THAT WHEN IT 1160 00:44:09,040 --> 00:44:11,880 COMES TO TRANSITIONING ACROSS 1161 00:44:11,880 --> 00:44:13,600 CRITICAL CAREER POINTS, WE TEND 1162 00:44:13,600 --> 00:44:17,080 TO SEE WHAT WE USED TO SAY WOULD 1163 00:44:17,080 --> 00:44:19,720 BE A LEAK IN THE PATHWAY, OR 1164 00:44:19,720 --> 00:44:22,120 PEOPLE MAKING OTHER DECISIONS, 1165 00:44:22,120 --> 00:44:24,960 NOT REALLY STAYING AND 1166 00:44:24,960 --> 00:44:28,160 PROGRESSING ALONG THAT RESEARCH 1167 00:44:28,160 --> 00:44:28,360 PATH. 1168 00:44:28,360 --> 00:44:32,440 A FEW YEARS AGO, WHAT THE NIH 1169 00:44:32,440 --> 00:44:34,120 BLUEPRINT NOW THE BRAIN, WE 1170 00:44:34,120 --> 00:44:36,400 DECIDED TO CREATE A PROGRAM THAT 1171 00:44:36,400 --> 00:44:39,840 WOULD REALLY EMPOWER TRAINEES TO 1172 00:44:39,840 --> 00:44:42,120 SEE THEMSELVES AS FUTURE 1173 00:44:42,120 --> 00:44:43,320 ACADEMIC RESEARCHERS. 1174 00:44:43,320 --> 00:44:45,240 SO REALLY INCREASING THAT 1175 00:44:45,240 --> 00:44:47,880 SELF-EFFICACY BUT THEN PROVIDING 1176 00:44:47,880 --> 00:44:50,080 THE SUPPORT AND ALSO THE 1177 00:44:50,080 --> 00:44:51,600 RESEARCH DOLLARS FOR THEM TO 1178 00:44:51,600 --> 00:44:53,520 REALLY HAVE THIS GOLDEN TICKET 1179 00:44:53,520 --> 00:44:55,120 AS THEY WERE THINKING ABOUT 1180 00:44:55,120 --> 00:44:56,160 THEIR NEXT CAREER STAGE. 1181 00:44:56,160 --> 00:45:00,160 IN THIS CASE, THE POSTDOC. 1182 00:45:00,160 --> 00:45:03,720 SO THE S99K00 IS AN AWARD WHERE 1183 00:45:03,720 --> 00:45:05,440 SOMEONE WOULD APPLY IN THE LAST 1184 00:45:05,440 --> 00:45:08,560 TWO YEARS OF THEIR GRADUATE 1185 00:45:08,560 --> 00:45:09,040 PROGRAM AND THEN IF THEY 1186 00:45:09,040 --> 00:45:11,120 SUCCESSFULLY GET THE AWARD, THEY 1187 00:45:11,120 --> 00:45:12,760 INDIVIDUAL THIS K00 THAT THEY 1188 00:45:12,760 --> 00:45:15,480 CAN THEN GO OUT AND LOOK FOR 1189 00:45:15,480 --> 00:45:15,760 POSTDOCS. 1190 00:45:15,760 --> 00:45:19,480 AND HAVING THAT AWARD, WE'VE 1191 00:45:19,480 --> 00:45:20,800 HEARD FROM OUR TRAINEES, REALLY 1192 00:45:20,800 --> 00:45:23,880 CHANGES THINGS BECAUSE IT GIVES 1193 00:45:23,880 --> 00:45:25,400 THEM AN OWNERSHIP OF THEIR 1194 00:45:25,400 --> 00:45:26,320 SCIENTIFIC PROJECT FROM THE VERY 1195 00:45:26,320 --> 00:45:28,040 BEGINNING AS A POSTDOC. 1196 00:45:28,040 --> 00:45:30,200 AND THAT CAN BE A VERY POWERFUL 1197 00:45:30,200 --> 00:45:30,400 THING. 1198 00:45:30,400 --> 00:45:31,800 AS YOU CAN SEE AT THE BOTTOM OF 1199 00:45:31,800 --> 00:45:34,920 THE SLIDE, IT'S NOT JUST NINDS. 1200 00:45:34,920 --> 00:45:36,760 THE OTHER NEUROSCIENCE 1201 00:45:36,760 --> 00:45:37,840 INSTITUTES PARTICIPATE IN THIS 1202 00:45:37,840 --> 00:45:42,120 AS WELL. 1203 00:45:42,120 --> 00:45:45,520 NEXT SLIDE. 1204 00:45:45,520 --> 00:45:45,840 NEXT SLIDE. 1205 00:45:45,840 --> 00:45:47,160 AS WE GO UP THE CAREER LADDER, 1206 00:45:47,160 --> 00:45:48,120 ANOTHER TRANSITIONAL AWARD, AND 1207 00:45:48,120 --> 00:45:50,440 THIS KNOW WAS STARTED BY NIGMS 1208 00:45:50,440 --> 00:45:53,160 AND NOW HAS SEVERAL OTHER ICs 1209 00:45:53,160 --> 00:45:54,640 THAT HAVE JOINED. 1210 00:45:54,640 --> 00:45:59,680 IT WAS THAT SAME THEME OF 1211 00:45:59,680 --> 00:46:00,800 EMPOWERING PEOPLE TO REALLY LOOK 1212 00:46:00,800 --> 00:46:01,760 AHEAD AND SEE THEIR CAREER PATH 1213 00:46:01,760 --> 00:46:05,440 BUT ALSO GIVE THEM THE FINANCIAL 1214 00:46:05,440 --> 00:46:07,280 SUPPORT TO DEVELOP TO THAT NEXT 1215 00:46:07,280 --> 00:46:09,040 STEP. 1216 00:46:09,040 --> 00:46:10,600 IT'S THE K99R00. 1217 00:46:10,600 --> 00:46:13,320 SO FOR THIS ONE, YOU WOULD BE A 1218 00:46:13,320 --> 00:46:15,200 POSTDOC IN YOUR ADVANCED CAREER 1219 00:46:15,200 --> 00:46:16,800 STAGES THAT WOULD APPLY. 1220 00:46:16,800 --> 00:46:18,600 YOU WOULD HAVE FUNDING TO 1221 00:46:18,600 --> 00:46:20,880 SUPPORT THE FINISHING UP OF YOUR 1222 00:46:20,880 --> 00:46:23,400 POSTDOC EXPERIENCE AND THEN HAVE 1223 00:46:23,400 --> 00:46:25,880 THIS R00 WHEN IT'S TIME FOR YOU 1224 00:46:25,880 --> 00:46:28,560 TO LOOK FOR YOUR FIRST TENURED 1225 00:46:28,560 --> 00:46:29,320 TRACK FACULTY POSITION. 1226 00:46:29,320 --> 00:46:32,680 AND AS YOU CAN IMAGINE, THIS 1227 00:46:32,680 --> 00:46:35,840 REALLY ONCE AGAIN, EMPOWERS 1228 00:46:35,840 --> 00:46:38,120 SOMEONE TO DO NEGOTIATION AND TO 1229 00:46:38,120 --> 00:46:39,960 REALLY DEVELOP THEIR SCIENTIFIC 1230 00:46:39,960 --> 00:46:40,280 PROGRAMS. 1231 00:46:40,280 --> 00:46:42,240 THE OTHER GREAT THING ABOUT THE 1232 00:46:42,240 --> 00:46:45,800 MOSAIC K99/R00 IS IT IS ALSO 1233 00:46:45,800 --> 00:46:47,400 LINKED TO A UE5. 1234 00:46:47,400 --> 00:46:52,040 AND THE UE5, THESE ARE PROGRAMS 1235 00:46:52,040 --> 00:46:54,120 AT DIFFERENT SCIENTIFIC 1236 00:46:54,120 --> 00:46:57,040 SOCIETIES, THAT ALSO CREATE THIS 1237 00:46:57,040 --> 00:46:59,560 COHORT OF MENTORING AND 1238 00:46:59,560 --> 00:47:02,120 PROFESSIONAL DEVELOPMENT FOR THE 1239 00:47:02,120 --> 00:47:04,080 MOSAIC SCHOLARS. 1240 00:47:04,080 --> 00:47:06,880 NEXT SLIDE. 1241 00:47:06,880 --> 00:47:10,320 AT NINDS, WE REALIZE EARLY ON 1242 00:47:10,320 --> 00:47:12,120 THAT WE WERE SEEING POSITIVE 1243 00:47:12,120 --> 00:47:14,960 TRENDS WHEN IT CAME TO SORT OF 1244 00:47:14,960 --> 00:47:17,360 GROWING THE PATHWAY, ESPECIALLY 1245 00:47:17,360 --> 00:47:20,520 OUR INVESTMENTS THAT WE HAD MADE 1246 00:47:20,520 --> 00:47:22,000 IN UNDERGRADUATE THROUGH OUR 1247 00:47:22,000 --> 00:47:22,360 ENDURE PROGRAM. 1248 00:47:22,360 --> 00:47:25,000 AND AS I MENTIONED, ALSO THE D 1249 00:47:25,000 --> 00:47:25,200 SPAN. 1250 00:47:25,200 --> 00:47:26,960 AND WE HAVE SEEN THIS SORT OF 1251 00:47:26,960 --> 00:47:28,720 LIKE GROWTH, RIGHT? 1252 00:47:28,720 --> 00:47:30,880 BUT THEN WHEN YOU LOOK AT THE 1253 00:47:30,880 --> 00:47:32,600 DATA AND I THINK YOU HAVE SEEN 1254 00:47:32,600 --> 00:47:34,840 IT FROM THE TWO PRESENTATIONS 1255 00:47:34,840 --> 00:47:38,640 BEFORE ME, WE START TO GET THIS 1256 00:47:38,640 --> 00:47:40,880 VERY TROUBLING DROP-OFF WHEN IT 1257 00:47:40,880 --> 00:47:44,960 COMES TO FACULTY, ESPECIALLY AS 1258 00:47:44,960 --> 00:47:47,000 PROFESSORS AND ALSO THE RO1. 1259 00:47:47,000 --> 00:47:48,280 SO WE THOUGHT LONG AND HARD 1260 00:47:48,280 --> 00:47:51,040 ABOUT THAT AND REALLY TRIED TO 1261 00:47:51,040 --> 00:47:53,040 STRATEGICALLY COME UP WITH 1262 00:47:53,040 --> 00:47:56,840 STRATEGIES TO ADDRESS THIS LATER 1263 00:47:56,840 --> 00:47:57,080 MESSAGE. 1264 00:47:57,080 --> 00:48:00,640 ONE OF THE STRATEGIES IS THE K01 1265 00:48:00,640 --> 00:48:04,280 FOR SOMEONE THAT IS IN LESS THAN 1266 00:48:04,280 --> 00:48:04,840 THEIR FIRST 3 YEARS OF THEIR 1267 00:48:04,840 --> 00:48:07,600 TENURED TRACK FACULTY POSITION. 1268 00:48:07,600 --> 00:48:10,240 AND WHAT IT DOES IS IT REALLY 1269 00:48:10,240 --> 00:48:12,200 PROVIDES THE SUPPORT FINANCIALLY 1270 00:48:12,200 --> 00:48:14,360 BUT ALSO THE SPONSORSHIP. 1271 00:48:14,360 --> 00:48:17,400 SO THIS IS A MENTORED AWARD BUT 1272 00:48:17,400 --> 00:48:19,560 NOT MENTORED IN TERMS OF HEAVY 1273 00:48:19,560 --> 00:48:20,080 OVERSIGHT. 1274 00:48:20,080 --> 00:48:22,120 THE SPONSORSHIP IN TERMS OF 1275 00:48:22,120 --> 00:48:23,560 HELPING THAT INDIVIDUAL REMOVE 1276 00:48:23,560 --> 00:48:26,960 THE OBSTACLES THROUGH THE 1277 00:48:26,960 --> 00:48:29,200 TENURED TRACK PROCESS. 1278 00:48:29,200 --> 00:48:31,160 SO -- THESE FUNDS REALLY ARE A 1279 00:48:31,160 --> 00:48:34,160 BRIDGE TO THAT FIRST RO1 FOR 1280 00:48:34,160 --> 00:48:37,520 THAT DIVERSE JUNIOR FACULTY. 1281 00:48:37,520 --> 00:48:41,560 NEXT SLIDE. 1282 00:48:41,560 --> 00:48:43,480 ANOTHER EFFORT ONCE AGAIN, YOU 1283 00:48:43,480 --> 00:48:47,800 SAW WE ARE, WHEN IT COMES TO NIH 1284 00:48:47,800 --> 00:48:50,160 AND RO1s FOR UNDER REPRESENTED 1285 00:48:50,160 --> 00:48:54,280 GROUPS, THERE HAS BEEN A LONG 1286 00:48:54,280 --> 00:48:54,920 DISPARITY AS HIGHLIGHTED BY THIS 1287 00:48:54,920 --> 00:48:57,280 PAPER, ESPECIALLY FOR 1288 00:48:57,280 --> 00:48:57,680 AFRICAN-AMERICANS. 1289 00:48:57,680 --> 00:49:01,600 AND RECENTLY, WE REALLY 1290 00:49:01,600 --> 00:49:03,800 STRATEGICALLY TRIED TO GO TO 1291 00:49:03,800 --> 00:49:04,840 THAT CAREER STAGE. 1292 00:49:04,840 --> 00:49:06,440 SO WHILE WE ARE WORKING ON 1293 00:49:06,440 --> 00:49:08,600 PROGRAMS TO GROW THE PATHWAY, 1294 00:49:08,600 --> 00:49:12,400 WHAT WE HAVE REALLY HEARD FROM 1295 00:49:12,400 --> 00:49:14,080 THE COMMUNITY IS THAT JUNIOR 1296 00:49:14,080 --> 00:49:17,480 FACULTY AND ALSO ESTABLISHED 1297 00:49:17,480 --> 00:49:18,120 FACULTY WHO ARE DIVERSE, REALLY 1298 00:49:18,120 --> 00:49:20,800 FELT LIKE THEY WERE BLEEDING OUT 1299 00:49:20,800 --> 00:49:22,560 OF THE NIH SYSTEM. 1300 00:49:22,560 --> 00:49:24,440 AND IN ORDER TO AMELIORATE THAT 1301 00:49:24,440 --> 00:49:28,360 AND TO HELP WITH THAT, WE 1302 00:49:28,360 --> 00:49:30,120 STRATEGICALLY CREATED A 1303 00:49:30,120 --> 00:49:31,640 DIVERSITY RO1. 1304 00:49:31,640 --> 00:49:33,720 NOW WE HAVE EVEN MORE INSTITUTES 1305 00:49:33,720 --> 00:49:35,280 WHO HAVE JOINED US SO WE ARE 1306 00:49:35,280 --> 00:49:36,360 REALLY THRILLED ABOUT THAT. 1307 00:49:36,360 --> 00:49:39,040 BUT THE GOAL HERE IS TO REALLY 1308 00:49:39,040 --> 00:49:42,200 ENCOURAGE A MORE DIVERSE POOL OF 1309 00:49:42,200 --> 00:49:44,880 PIs TO CONTRIBUTE TO 1310 00:49:44,880 --> 00:49:46,800 NEUROSCIENCE RESEARCH FOR OUR 1311 00:49:46,800 --> 00:49:49,400 INSTITUTE AND THESE OTHER 1312 00:49:49,400 --> 00:49:50,880 INSTITUTES THAT HAVE MISSIONS AS 1313 00:49:50,880 --> 00:49:51,080 WELL. 1314 00:49:51,080 --> 00:49:55,320 I THINK DR. LEY LAID OUT THAT 1315 00:49:55,320 --> 00:49:57,040 IT'S NOT JUST A PERSONAL BENEFIT 1316 00:49:57,040 --> 00:49:59,680 TO THESE INVESTIGATORS TO HAVE 1317 00:49:59,680 --> 00:50:00,680 THEIR DIVERSE PERSPECTIVES 1318 00:50:00,680 --> 00:50:05,360 INCLUDED, BUT IT REALLY IMPACTS 1319 00:50:05,360 --> 00:50:05,880 THE SCIENCE THAT WE DO. 1320 00:50:05,880 --> 00:50:08,200 AND THE QUALITY OF THE SCIENCE 1321 00:50:08,200 --> 00:50:09,600 THAT WE DO AT NIH. 1322 00:50:09,600 --> 00:50:11,840 SO IT'S NOT ONLY THE RIGHT THING 1323 00:50:11,840 --> 00:50:14,840 TO DO IN TERMS OF WE CAN DECIDE 1324 00:50:14,840 --> 00:50:16,840 INDIVIDUALLY AND MORALLY, BUT 1325 00:50:16,840 --> 00:50:17,840 SCIENTIFICALLY FOR THE 1326 00:50:17,840 --> 00:50:18,120 INVESTMENT. 1327 00:50:18,120 --> 00:50:20,720 IT'S A SMART THING TO DO. 1328 00:50:20,720 --> 00:50:22,880 AND SO THIS DIVERSITY RO1 1329 00:50:22,880 --> 00:50:24,280 TARGETS NEW INVESTIGATORS, 1330 00:50:24,280 --> 00:50:28,600 INCLUDING ESIs AND THEN ALSO 1331 00:50:28,600 --> 00:50:29,280 AT-RISK INVESTIGATORS. 1332 00:50:29,280 --> 00:50:31,400 SO IT COULD BE REALLY -- PEOPLE 1333 00:50:31,400 --> 00:50:35,480 CAN GET THAT FIRST RO1 BUT OFTEN 1334 00:50:35,480 --> 00:50:36,960 MAKES TROUBLE WITH STAYING IN 1335 00:50:36,960 --> 00:50:38,120 THE RESEARCH ENTERPRISE. 1336 00:50:38,120 --> 00:50:43,280 SO THE AT-RISK ALSO INCLUDES 1337 00:50:43,280 --> 00:50:46,040 THOSE INDIVIDUALS. 1338 00:50:46,040 --> 00:50:46,600 NEXT SLIDE. 1339 00:50:46,600 --> 00:50:50,160 I ALSO WANT TO HIGHLIGHT A 1340 00:50:50,160 --> 00:50:51,160 PROGRAM THAT IS FUNDED THROUGH 1341 00:50:51,160 --> 00:50:54,040 THE NIH COMMON FUND BUT ALSO IN 1342 00:50:54,040 --> 00:50:57,080 PARTNERSHIP WITH COSWD AND ALL 1343 00:50:57,080 --> 00:50:59,720 OF THE NIH INSTITUTES AND 1344 00:50:59,720 --> 00:51:00,760 CENTERS IS THE FIRST PROGRAM. 1345 00:51:00,760 --> 00:51:05,280 THIS IS REALLY THE -- DR. LEY 1346 00:51:05,280 --> 00:51:06,880 TALKED A LITTLE BIT ABOUT THE 1347 00:51:06,880 --> 00:51:08,320 DSB PROGRAM INTRAMURALLY. 1348 00:51:08,320 --> 00:51:11,440 THIS IS A VERSION OF THISSA 1349 00:51:11,440 --> 00:51:13,400 EXTRAMURALLY WITH -- WE ARE NOW 1350 00:51:13,400 --> 00:51:16,000 ON OUR SECOND AWARD -- ROUND OF 1351 00:51:16,000 --> 00:51:17,840 AWARDS WAS JUST ANNOUNCED. 1352 00:51:17,840 --> 00:51:21,040 THESE ARE PROGRAMS THAT REALLY 1353 00:51:21,040 --> 00:51:24,240 RECOGNIZE NOT JUST FOCUSING ON 1354 00:51:24,240 --> 00:51:25,520 FIXING BROKEN INDIVIDUALS WHEN 1355 00:51:25,520 --> 00:51:27,080 IT COMES TO INCREASING DIVERSITY 1356 00:51:27,080 --> 00:51:29,200 OF THE WORKFORCE, BUT REALLY 1357 00:51:29,200 --> 00:51:31,720 FIXING BROKEN SYSTEMS. 1358 00:51:31,720 --> 00:51:34,920 SO THESE U54s FROM AROUND THE 1359 00:51:34,920 --> 00:51:37,080 COUNTRY ARE DOING CLUSTER OR 1360 00:51:37,080 --> 00:51:38,840 COHORT HIRING. 1361 00:51:38,840 --> 00:51:41,440 IN ADDITION TO THAT, REALLY ARE 1362 00:51:41,440 --> 00:51:45,840 FOCUSED ON PROVIDING INCLUSIVE 1363 00:51:45,840 --> 00:51:48,000 EXCELLENT ENVIRONMENT IN TERMS 1364 00:51:48,000 --> 00:51:50,160 OF FACULTY DEVELOPMENT CORES, 1365 00:51:50,160 --> 00:51:51,280 MENTORSHIPS, RETENTION PLANS, 1366 00:51:51,280 --> 00:51:55,720 EVEN IN TERMS OF RECRUITMENT, 1367 00:51:55,720 --> 00:51:56,640 UNCONSCIOUS BIAS TRAINING AND 1368 00:51:56,640 --> 00:51:58,040 ALL THESE THINGS THAT WOULD 1369 00:51:58,040 --> 00:52:00,600 CONTRIBUTE TO NOT ONLY AN 1370 00:52:00,600 --> 00:52:01,600 ENVIRONMENT THAT HAS DIVERSITY 1371 00:52:01,600 --> 00:52:04,280 BY THE NUMBERS BUT REALLY 1372 00:52:04,280 --> 00:52:09,160 FOCUSES ON THE INCLUSION OF 1373 00:52:09,160 --> 00:52:13,840 THOSE ENVIRONMENTS AS WELL. 1374 00:52:13,840 --> 00:52:14,160 NEXT SLIDE. 1375 00:52:14,160 --> 00:52:17,160 AND SO I'LL GO REALLY QUICKLY. 1376 00:52:17,160 --> 00:52:18,720 I TALKED A LOT ABOUT THE MONEY 1377 00:52:18,720 --> 00:52:23,280 BUT A LOT OF THIS IS ALSO ABOUT 1378 00:52:23,280 --> 00:52:25,200 CREATING THAT SENSE OF 1379 00:52:25,200 --> 00:52:27,040 COMMUNITY, MAINTAINING THE 1380 00:52:27,040 --> 00:52:28,600 NETWORKS AND THEN PROVIDING THE 1381 00:52:28,600 --> 00:52:31,040 RESOURCES AND WE TALKED A LOT 1382 00:52:31,040 --> 00:52:32,600 ABOUT THIS MORNING. 1383 00:52:32,600 --> 00:52:38,080 ALSO ACTIVE OUTREACH. 1384 00:52:38,080 --> 00:52:39,880 NEXT SLIDE. 1385 00:52:39,880 --> 00:52:41,920 SO R25 INSTITUTIONAL PROGRAMS, 1386 00:52:41,920 --> 00:52:44,400 JUST REALLY WANT TO HIGHLIGHT 1387 00:52:44,400 --> 00:52:45,040 HERE ALL OF THESE PROGRAMS 1388 00:52:45,040 --> 00:52:47,480 REALLY FOCUS ON CREATING THAT 1389 00:52:47,480 --> 00:52:50,160 SENSE OF COMMUNITY, THAT SENSE 1390 00:52:50,160 --> 00:52:53,760 OF NETWORK. 1391 00:52:53,760 --> 00:52:55,720 HAVING PEOPLE REALLY IDENTIFY 1392 00:52:55,720 --> 00:52:57,040 WITHIN THEIR SCIENTIFIC 1393 00:52:57,040 --> 00:53:00,560 DISCIPLINE BUT ALSO PROVIDING 1394 00:53:00,560 --> 00:53:11,000 THIS PEER-TO-PEER SUPPORT. 1395 00:53:13,000 --> 00:53:13,760 NEXT SLIDE. 1396 00:53:13,760 --> 00:53:16,280 IN TERMS OF OUR MENTORING HUBS, 1397 00:53:16,280 --> 00:53:17,600 I WANT TO HIGHLIGHT SOME OF 1398 00:53:17,600 --> 00:53:21,080 THESE PROGRAMS THAT WE HAVE 1399 00:53:21,080 --> 00:53:21,360 SUPPORTED. 1400 00:53:21,360 --> 00:53:22,560 I THINK THAT WE WILL BE SHARING 1401 00:53:22,560 --> 00:53:23,800 THE SLIDES SO YOU'LL BE ABLE TO 1402 00:53:23,800 --> 00:53:25,880 SEE THESE BUT THESE ARE GREAT 1403 00:53:25,880 --> 00:53:27,320 PROGRAMS, ESPECIALLY IF YOU'RE 1404 00:53:27,320 --> 00:53:32,400 AT AN INSTITUTION WHERE OFTEN 1405 00:53:32,400 --> 00:53:33,080 PEOPLE FROM UNDERREPRESENTED 1406 00:53:33,080 --> 00:53:35,440 BACKGROUNDS CAN FEEL LIKE AN N 1407 00:53:35,440 --> 00:53:35,640 OF 1. 1408 00:53:35,640 --> 00:53:38,040 THESE ARE REALLY GREAT NATIONAL 1409 00:53:38,040 --> 00:53:39,040 MENTORING NETWORKS WHERE YOU CAN 1410 00:53:39,040 --> 00:53:41,720 FEEL A PART OF A VIOLENT AND A 1411 00:53:41,720 --> 00:53:43,440 SCIENTIFIC COMMUNITY. 1412 00:53:43,440 --> 00:53:45,200 NEXT SLIDE. 1413 00:53:45,200 --> 00:53:46,320 -- PART OF AN ENVIRONMENT AND 1414 00:53:46,320 --> 00:53:47,280 SCIENTIFIC COMMUNITY. 1415 00:53:47,280 --> 00:53:50,160 ALSO A BIG PART OF MY OFFICE IS 1416 00:53:50,160 --> 00:53:52,000 DOING EXTRAMURAL OUTREACH 1417 00:53:52,000 --> 00:53:53,920 BRINGING COMMUNITIES TOGETHER. 1418 00:53:53,920 --> 00:53:56,680 WE DON'T HAVE ALL OF THE ANSWERS 1419 00:53:56,680 --> 00:53:57,120 INSIDE OF NIH. 1420 00:53:57,120 --> 00:54:01,560 IT IS REALLY IMPORTANT THAT WE 1421 00:54:01,560 --> 00:54:02,400 TAKE ADVANTAGE OF THE WONDERFUL 1422 00:54:02,400 --> 00:54:04,280 PROGRAMS THAT COULD BE GOING ON 1423 00:54:04,280 --> 00:54:07,480 AT AN INSTITUTIONAL OR 1424 00:54:07,480 --> 00:54:08,840 DEPARTMENT LEVEL AND BECAUSE OF 1425 00:54:08,840 --> 00:54:11,480 THAT, WE BRING AND GATHER OUR 1426 00:54:11,480 --> 00:54:15,080 T32 AND R25 INSTITUTIONS EVERY 1427 00:54:15,080 --> 00:54:18,240 OTHER YEAR AND REALLY HAVE 1428 00:54:18,240 --> 00:54:21,000 CONVERSATIONS ABOUT SOME OF THE 1429 00:54:21,000 --> 00:54:23,040 PAIN POINTS OUT THERE IN 1430 00:54:23,040 --> 00:54:23,320 ACADEMIA. 1431 00:54:23,320 --> 00:54:26,680 OUR LAST ONE WAS ON MAINTAINING 1432 00:54:26,680 --> 00:54:28,360 A NEURAL NETWORK AND WE TALKED 1433 00:54:28,360 --> 00:54:30,160 ABOUT THE ISSUES INVOLVING 1434 00:54:30,160 --> 00:54:32,160 MENTORSHIP AND HOW WE CAN 1435 00:54:32,160 --> 00:54:35,360 TRANSFORM THAT AS A COMMUNITY. 1436 00:54:35,360 --> 00:54:37,560 WITH THE PARTNERSHIP. 1437 00:54:37,560 --> 00:54:38,560 NIH CAN'T DO THIS ALONE. 1438 00:54:38,560 --> 00:54:40,840 WE REALLY NEED INTENTIONAL 1439 00:54:40,840 --> 00:54:42,800 PARTNERSHIPS WITH OUR 1440 00:54:42,800 --> 00:54:44,840 INSTITUTIONS AND UNIVERSITIES. 1441 00:54:44,840 --> 00:54:47,040 AND OUR COMMUNITIES AND ADVOCACY 1442 00:54:47,040 --> 00:54:50,840 NETWORKS AS WELL. 1443 00:54:50,840 --> 00:54:54,120 NEXT SLIDE. 1444 00:54:54,120 --> 00:54:55,120 JUST A PLUG FOR OUR OPEN STAGE. 1445 00:54:55,120 --> 00:54:57,840 THIS IS WHERE WE TRY TO JUST 1446 00:54:57,840 --> 00:54:58,760 DEMYSTIFY A LOT OF OUR PROGRAMS. 1447 00:54:58,760 --> 00:54:59,960 ONCE AGAIN, I'LL SHARE THE 1448 00:54:59,960 --> 00:55:02,040 CONTACT BUT OUR NEXT ONE IS 1449 00:55:02,040 --> 00:55:04,960 GOING TO BE ON CLINICAL 1450 00:55:04,960 --> 00:55:06,760 RESEARCHERS AND HOW TO NAVIGATE 1451 00:55:06,760 --> 00:55:09,040 UNDERSTANDING NIH PROGRAMS, 1452 00:55:09,040 --> 00:55:14,160 ESPECIALLY AT NINDS. 1453 00:55:14,160 --> 00:55:15,160 NEXT SLIDE. 1454 00:55:15,160 --> 00:55:17,760 AND I'LL END WITH THIS WITH OUR 1455 00:55:17,760 --> 00:55:19,280 OPEN CONNECTIONS. 1456 00:55:19,280 --> 00:55:21,080 WE REALLY, AS I SAID, WANT TO BE 1457 00:55:21,080 --> 00:55:23,360 PARTNERS WITH YOU ALL. 1458 00:55:23,360 --> 00:55:24,560 WE HAVE SEVERAL SOCIAL WAYS THAT 1459 00:55:24,560 --> 00:55:26,400 YOU CAN CONNECT WITH US. 1460 00:55:26,400 --> 00:55:28,480 WE SEND OUT INFORMATION VIA OUR 1461 00:55:28,480 --> 00:55:30,520 LISTSERV AND ALSO HAVE A REALLY 1462 00:55:30,520 --> 00:55:31,960 INFORMATIVE PODCAST THAT IS 1463 00:55:31,960 --> 00:55:35,360 WORTH A LISTEN IN TERMS OF 1464 00:55:35,360 --> 00:55:38,160 DEMYSTIFYING HOW NINDS WORKS AND 1465 00:55:38,160 --> 00:55:39,960 HOW ACTIVE WE ARE IN TERMS OF 1466 00:55:39,960 --> 00:55:40,840 OUR TWITTER. 1467 00:55:40,840 --> 00:55:44,880 AND SO THE FINAL SLIDE I'LL END 1468 00:55:44,880 --> 00:55:46,120 WITH THAT. 1469 00:55:46,120 --> 00:55:47,840 WE REALLY DON'T SEE -- WE OFTEN 1470 00:55:47,840 --> 00:55:49,240 HEAR ABOUT DIVERSITY BEING A 1471 00:55:49,240 --> 00:55:50,400 PROBLEM BUT DIVERSITY REALLY IS 1472 00:55:50,400 --> 00:55:51,040 NOT A PROBLEM. 1473 00:55:51,040 --> 00:55:54,440 IT'S ACTUALLY THE SOLUTION. 1474 00:55:54,440 --> 00:55:55,680 SO LOOK FORWARD TO THE FUTURE 1475 00:55:55,680 --> 00:55:55,920 QUESTIONS. 1476 00:55:55,920 --> 00:55:59,920 THANK YOU. 1477 00:55:59,920 --> 00:56:00,400 >> THANK YOU VERY MUCH 1478 00:56:00,400 --> 00:56:01,120 DR. MICHELLE JONES-LONDON. 1479 00:56:01,120 --> 00:56:05,080 THANK YOU FOR SHARING WITH US 1480 00:56:05,080 --> 00:56:07,440 VERY RICH DEIA OPPORTUNITIES IN 1481 00:56:07,440 --> 00:56:10,800 THE NEUROSCIENCE WORKFORCE. 1482 00:56:10,800 --> 00:56:13,840 OUR LAST BUT NOT LEAST SPEAKER 1483 00:56:13,840 --> 00:56:16,760 OF THIS SESSION IS DR. JIANHUA 1484 00:56:16,760 --> 00:56:17,680 WU. 1485 00:56:17,680 --> 00:56:20,760 HE IS A PROFESSOR AT THE 1486 00:56:20,760 --> 00:56:23,400 DEPARTMENT OF KIN EASOLOGY AND 1487 00:56:23,400 --> 00:56:25,240 HEALTH AT GEORGIA STATE 1488 00:56:25,240 --> 00:56:25,800 UNIVERSITY. 1489 00:56:25,800 --> 00:56:27,280 DR. JIANHUA WU HAS BEEN 1490 00:56:27,280 --> 00:56:30,040 CONDUCTING BOTH BASIC AND 1491 00:56:30,040 --> 00:56:32,280 CLINICAL RESEARCH WITH CHILDREN 1492 00:56:32,280 --> 00:56:34,120 WITH AND WITHOUT DISABILITIES, 1493 00:56:34,120 --> 00:56:35,080 INCLUDING DOWN SYNDROME. 1494 00:56:35,080 --> 00:56:38,480 DR. JIANHUA WU IS ONE OF THE TWO 1495 00:56:38,480 --> 00:56:44,680 RECIPIENTS OF THE COSWD-DEIA 1496 00:56:44,680 --> 00:56:46,320 INITIATIVE FUNDED THROUGH THE 1497 00:56:46,320 --> 00:56:50,440 INCLUDE PROJECT HELPING TO 1498 00:56:50,440 --> 00:56:51,160 RECRUIT TWO DOCTORATE STUDENTS 1499 00:56:51,160 --> 00:56:53,440 AND UNDERGRADUATE STUDENTS FROM 1500 00:56:53,440 --> 00:56:54,040 THE UNDERREPRESENTED BACKGROUNDS 1501 00:56:54,040 --> 00:56:56,880 AND PROVIDE THEM WITH INTENSIVE 1502 00:56:56,880 --> 00:56:57,280 RESEARCH TRAINING. 1503 00:56:57,280 --> 00:56:58,840 WELCOME DR. JIANHUA WU. 1504 00:56:58,840 --> 00:57:02,160 >> JIANHUA WU: THANK YOU FOR 1505 00:57:02,160 --> 00:57:04,240 THAT INTRODUCTION. 1506 00:57:04,240 --> 00:57:06,560 SO, MY TALK WILL BE DIFFERENT 1507 00:57:06,560 --> 00:57:07,200 FROM THE PREVIOUS TWO TALKS. 1508 00:57:07,200 --> 00:57:12,240 I AM GOING TO FOCUS ON MENTORING 1509 00:57:12,240 --> 00:57:13,320 STUDENTS, PARTICULARLY THOSE 1510 00:57:13,320 --> 00:57:14,200 FROM UNDERREPRESENTED 1511 00:57:14,200 --> 00:57:14,520 BACKGROUNDS. 1512 00:57:14,520 --> 00:57:20,320 NEXT SLIDE, PLEASE. 1513 00:57:20,320 --> 00:57:23,520 SO, IN SUMMER OF 2021, ONE DAY I 1514 00:57:23,520 --> 00:57:26,120 RECEIVED AN E-MAIL FROM SOMEONE 1515 00:57:26,120 --> 00:57:28,040 WHO I DO NOT KNOW. 1516 00:57:28,040 --> 00:57:33,080 AND THE E-MAIL SAID THAT I WAS 1517 00:57:33,080 --> 00:57:39,080 THE RECIPIENT OF THE JEAN LANDA 1518 00:57:39,080 --> 00:57:39,880 PATEL AWARD. 1519 00:57:39,880 --> 00:57:42,120 I THOUGHT THIS IS NOT TRUE 1520 00:57:42,120 --> 00:57:47,800 BECAUSE THE AMERICAN SOCIETY OF 1521 00:57:47,800 --> 00:57:48,760 BIOMECHANICS ESTABLISHED THIS 1522 00:57:48,760 --> 00:57:51,160 AWARD JUST PREVIOUSLY. 1523 00:57:51,160 --> 00:57:52,040 SO THEY ARE GOING TO GIVE AWARD 1524 00:57:52,040 --> 00:57:56,800 AND I FEEL LIKE I AM NOT GOOD 1525 00:57:56,800 --> 00:57:57,760 ENOUGH TO RECEIVE THIS 1526 00:57:57,760 --> 00:57:59,280 PRESTIGIOUS AWARD. 1527 00:57:59,280 --> 00:58:01,680 SO THIS AWARD IS ABOUT 1528 00:58:01,680 --> 00:58:03,360 MENTORING, DIVERSE MENTORING. 1529 00:58:03,360 --> 00:58:05,760 IT RECOGNIZED THE LONG-TERM 1530 00:58:05,760 --> 00:58:08,080 IMPACT OF MENTORING ON CAREERS 1531 00:58:08,080 --> 00:58:10,360 OF INDIVIDUAL SCIENTISTS AND THE 1532 00:58:10,360 --> 00:58:11,040 ULTIMATE BETTERMENT OF OUR 1533 00:58:11,040 --> 00:58:11,280 SOCIETY. 1534 00:58:11,280 --> 00:58:13,720 SO I FEEL LIKE I HAVE DONE 1535 00:58:13,720 --> 00:58:15,240 SOMETHING BUT I WAS SURPRISED TO 1536 00:58:15,240 --> 00:58:17,560 KNOW THAT I AM THE RECIPIENT OF 1537 00:58:17,560 --> 00:58:22,800 THIS AWARD. 1538 00:58:22,800 --> 00:58:25,680 AND NEXT DAY IT WAS CONFIRMED 1539 00:58:25,680 --> 00:58:26,640 AND THEN MY STUDENTS TOLD ME, 1540 00:58:26,640 --> 00:58:28,200 GREAT. 1541 00:58:28,200 --> 00:58:30,160 YOU RECEIVED THIS AWARD BECAUSE 1542 00:58:30,160 --> 00:58:31,400 WE NOMINATED YOU. 1543 00:58:31,400 --> 00:58:33,120 SO I FEEL LIKE IT WAS SURREAL TO 1544 00:58:33,120 --> 00:58:36,480 RECEIVE THIS AWARD AND RECOGNIZE 1545 00:58:36,480 --> 00:58:38,400 THAT I HAVE DONE SOMETHING WHICH 1546 00:58:38,400 --> 00:58:40,280 IS WORKING TO THE BIOMECHANICS 1547 00:58:40,280 --> 00:58:42,440 TO THE WHOLE SOCIETY. 1548 00:58:42,440 --> 00:58:45,080 SO I LOOKED AT THE CRITERIA FOR 1549 00:58:45,080 --> 00:58:46,120 THIS AWARD. 1550 00:58:46,120 --> 00:58:48,120 IT HAS THREE ASSETS. 1551 00:58:48,120 --> 00:58:49,680 THE FIRST IS ENCOURAGE WOMEN IN 1552 00:58:49,680 --> 00:58:51,320 SCIENCE AND ENGINEERING. 1553 00:58:51,320 --> 00:58:54,360 THE SECOND ONE IS TO PROVIDE 1554 00:58:54,360 --> 00:58:55,360 UNDERGRADUATE STUDENTS WITH 1555 00:58:55,360 --> 00:58:56,880 EXPERIENCE AND ESPECIALLY IN 1556 00:58:56,880 --> 00:58:58,160 RESEARCH AND OUTREACH. 1557 00:58:58,160 --> 00:59:01,840 THE LAST ONE IS ENGINEERING 1558 00:59:01,840 --> 00:59:03,120 EDUCATION AND INTERNATIONAL 1559 00:59:03,120 --> 00:59:03,440 OUTREACH. 1560 00:59:03,440 --> 00:59:06,080 TODAY I'M GOING TO SHARE WITH 1561 00:59:06,080 --> 00:59:08,840 YOU MY WORK IN THESE 3 AREAS AND 1562 00:59:08,840 --> 00:59:09,640 HOPEFULLY THAT WILL STIMULATE 1563 00:59:09,640 --> 00:59:12,480 DISCUSSION ABOUT HOW TO MENTOR 1564 00:59:12,480 --> 00:59:15,000 STUDENTS WHO ARE FROM 1565 00:59:15,000 --> 00:59:16,760 UNDERREPRESENTED BACKGROUNDS. 1566 00:59:16,760 --> 00:59:22,080 NEXT SLIDE, PLEASE. 1567 00:59:22,080 --> 00:59:24,720 SO I WANT TO GIVE INFORMATION 1568 00:59:24,720 --> 00:59:26,480 ABOUT MY BACKGROUND. 1569 00:59:26,480 --> 00:59:28,560 I WAS BORN AND RAISED IN CHINA. 1570 00:59:28,560 --> 00:59:31,440 SO I WENT TO COLLEGE AND 1571 00:59:31,440 --> 00:59:32,800 GRADUATE SCHOOL IN CHINA. 1572 00:59:32,800 --> 00:59:35,720 MY PARENTS HAD BEEN VERY 1573 00:59:35,720 --> 00:59:36,520 SUPPORTIVE ABOUT MY EDUCATION. 1574 00:59:36,520 --> 00:59:38,320 AND WHEN I TOLD THEM THAT I WANT 1575 00:59:38,320 --> 00:59:40,240 TO GO TO UNITED STATES TO 1576 00:59:40,240 --> 00:59:42,120 FURTHER MY STUDIES, THEY FULLY 1577 00:59:42,120 --> 00:59:44,920 SUPPORTED ME. 1578 00:59:44,920 --> 00:59:47,160 AND THAT TOTALLY CHANGED MY 1579 00:59:47,160 --> 00:59:48,880 CAREER, MYECTION AND HOW I SEE 1580 00:59:48,880 --> 00:59:50,280 THE DIVERSITY -- EDUCATION -- IN 1581 00:59:50,280 --> 00:59:51,880 THE RESEARCH IN SOCIETY. 1582 00:59:51,880 --> 00:59:55,720 SO I WENT TO UC DAVIS FOR MY 1583 00:59:55,720 --> 00:59:56,920 PH.D. AND UNIVERSITY IN MICHIGAN 1584 00:59:56,920 --> 01:00:00,400 FOR MY POSTDOCTORAL. 1585 01:00:00,400 --> 01:00:02,160 SO I GOT TRAINED BY SO MANY 1586 01:00:02,160 --> 01:00:04,440 PEOPLE AND CERTAINLY A LOT OF 1587 01:00:04,440 --> 01:00:07,440 GOOD AFFLUENT MENTORS THAT ALSO 1588 01:00:07,440 --> 01:00:08,480 CAME FROM DIFFERENT BACKGROUNDS. 1589 01:00:08,480 --> 01:00:14,440 NEXT SLIDE, PLEASE. 1590 01:00:14,440 --> 01:00:17,520 WHEN I STARTED IN MY ESTABLISHED 1591 01:00:17,520 --> 01:00:19,360 POSITION AT GEORGIA STATE 1592 01:00:19,360 --> 01:00:25,280 UNIVERSITY IN 2007, I HAD 1593 01:00:25,280 --> 01:00:26,960 FULFILL MY DREAM ABOUT TRAINING 1594 01:00:26,960 --> 01:00:31,720 STUDENTS WHO COME FROM 1595 01:00:31,720 --> 01:00:33,080 UNDERREPRESENTED BACKGROUNDS. 1596 01:00:33,080 --> 01:00:34,400 SO GEORGIA STATE IS ONE OF THE 1597 01:00:34,400 --> 01:00:37,440 MOST DIVERSE UNIVERSITIES IN THE 1598 01:00:37,440 --> 01:00:38,040 UNITED STATES. 1599 01:00:38,040 --> 01:00:41,520 WE HAVE MORE THAN 54,000 1600 01:00:41,520 --> 01:00:43,760 STUDENTS FROM MORE THAN 167 1601 01:00:43,760 --> 01:00:46,640 NATIONS AND TERRITORIES. 1602 01:00:46,640 --> 01:00:50,360 AND RANKED NUMBER 1 UNIVERSITY 1603 01:00:50,360 --> 01:00:51,520 FOR ANNUAL GRADUATE 1604 01:00:51,520 --> 01:00:52,560 AFRICAN-AMERICAN STUDENTS IN THE 1605 01:00:52,560 --> 01:00:53,800 UNITED STATES. 1606 01:00:53,800 --> 01:00:56,760 AND ALSO WE ARE R1 URBAN 1607 01:00:56,760 --> 01:00:57,200 RESEARCH UNIVERSITY. 1608 01:00:57,200 --> 01:00:59,840 WE DO BOTH RESEARCH AND 1609 01:00:59,840 --> 01:01:00,120 TEACHING. 1610 01:01:00,120 --> 01:01:00,680 WE INCORPORATE RESEARCH INTO 1611 01:01:00,680 --> 01:01:03,080 TEACHING AND TRY TO STIMULATE 1612 01:01:03,080 --> 01:01:04,560 INTEREST FROM STUDENTS WHO COME 1613 01:01:04,560 --> 01:01:06,560 FROM THE UNDERREPRESENTED 1614 01:01:06,560 --> 01:01:07,360 BACKGROUNDS. 1615 01:01:07,360 --> 01:01:08,840 AND HELP THEM TO DEVELOP 1616 01:01:08,840 --> 01:01:10,080 RESEARCH SKILLS AND MOVE ON TO 1617 01:01:10,080 --> 01:01:13,480 THE NEXT STAGE OF THEIR CAREER. 1618 01:01:13,480 --> 01:01:18,120 NEXT SLIDE. 1619 01:01:18,120 --> 01:01:20,000 SO, MYSELF, MY UNDERGRADUATE IN 1620 01:01:20,000 --> 01:01:24,280 TRAINING WAS IN ENGINEERING. 1621 01:01:24,280 --> 01:01:28,560 BUT MY DOCTORAL STUDY WAS ABOUT 1622 01:01:28,560 --> 01:01:32,080 HUMAN CONTROL AND THEN I SPENT 1623 01:01:32,080 --> 01:01:32,840 PEDIATRIC REHABILITATION WHEN I 1624 01:01:32,840 --> 01:01:34,080 WAS A POSTDOC. 1625 01:01:34,080 --> 01:01:39,560 SO I GOT TRAINING TO COMBINE 1626 01:01:39,560 --> 01:01:41,520 THOSE IN PEDIATRIC 1627 01:01:41,520 --> 01:01:43,520 REHABILITATION SKILLS FOR MY 1628 01:01:43,520 --> 01:01:43,760 RESEARCH. 1629 01:01:43,760 --> 01:01:48,280 SO I'M FOCUSED ON UNDERSTANDING 1630 01:01:48,280 --> 01:01:49,800 HOW THE EVENTS CHILDREN WITH 1631 01:01:49,800 --> 01:01:51,720 DISABILITIES MOVE AROUND, 1632 01:01:51,720 --> 01:01:54,640 DEVELOP THEIR MOTOR SKILLS AND 1633 01:01:54,640 --> 01:01:58,600 ALSO I WANT TO DESIGN INNOVATIVE 1634 01:01:58,600 --> 01:02:01,560 PROTOCOLS TO HELP THOSE KIDS WHO 1635 01:02:01,560 --> 01:02:04,680 HAVE DEVELOPMENTAL DELAY TO 1636 01:02:04,680 --> 01:02:07,760 ADVANCE THEIR DEVELOPMENT AND 1637 01:02:07,760 --> 01:02:10,920 ALSO HAVE USED THAT TO PROMOTE 1638 01:02:10,920 --> 01:02:13,760 DIFFERENT IN MULTIPLE DOMAINS, 1639 01:02:13,760 --> 01:02:15,080 INCLUDING MOTOR AND ALSO 1640 01:02:15,080 --> 01:02:18,400 LANGUAGE, COGNITION AND SOCIAL 1641 01:02:18,400 --> 01:02:19,120 SKILLS. 1642 01:02:19,120 --> 01:02:20,600 SO THAT HAS BEEN MY FOCUS FOR 1643 01:02:20,600 --> 01:02:22,440 ALMOST THE LAST 20 YEARS. 1644 01:02:22,440 --> 01:02:25,600 NEXT SLIDE, PLEASE. 1645 01:02:25,600 --> 01:02:30,120 SO I HAVE CLINICAL PERSPECTIVE 1646 01:02:30,120 --> 01:02:33,040 AND EXPERIENCE WHEN I CONDUCT 1647 01:02:33,040 --> 01:02:34,160 TRAINING WITH INFANTS WITH DOWN 1648 01:02:34,160 --> 01:02:34,440 SYNDROME. 1649 01:02:34,440 --> 01:02:36,640 I WAS LUCKY ENOUGH TO HAVE THE 1650 01:02:36,640 --> 01:02:39,080 GRANT FROM NIH TO SUPPORT THIS 1651 01:02:39,080 --> 01:02:39,320 RESEARCH. 1652 01:02:39,320 --> 01:02:42,320 RIGHT NOW WE ARE DOING ANOTHER 1653 01:02:42,320 --> 01:02:44,240 STUDY WITH THIS POPULATION IN 1654 01:02:44,240 --> 01:02:46,920 TRYING TO UNDERSTAND THE 1655 01:02:46,920 --> 01:02:48,640 COMBINATION OF TREADMILL 1656 01:02:48,640 --> 01:02:50,040 TRAINING AND FINE MOTOR 1657 01:02:50,040 --> 01:02:53,960 TRAINING, HOW DOES THAT HELP 1658 01:02:53,960 --> 01:02:55,920 CHILDREN WITH DOWN SYNDROME TO 1659 01:02:55,920 --> 01:02:57,080 INCLUDE THEIR DOMAINS. 1660 01:02:57,080 --> 01:02:59,160 ANOTHER CLINICAL INTEREST IS THE 1661 01:02:59,160 --> 01:03:00,720 BONE GROWTH AND THE PHYSICAL 1662 01:03:00,720 --> 01:03:02,120 ACTIVITY OF CHILDREN WITH DOWN 1663 01:03:02,120 --> 01:03:03,080 SYNDROME. 1664 01:03:03,080 --> 01:03:06,520 I WANT TO UNDERSTAND HOW THE 1665 01:03:06,520 --> 01:03:08,280 BONE GROWTH AND DEVELOPMENT WILL 1666 01:03:08,280 --> 01:03:10,240 SHAPE THEIR PHYSICAL ACTIVITY 1667 01:03:10,240 --> 01:03:13,520 AND BENEFIT THEIR PHYSICAL 1668 01:03:13,520 --> 01:03:14,120 ACTIVITY. 1669 01:03:14,120 --> 01:03:17,840 I AM INTERESTED IN LOCOMOTOR 1670 01:03:17,840 --> 01:03:19,080 DEVELOPMENT AND WALKING, 1671 01:03:19,080 --> 01:03:21,960 RUNNING, JUMPING, STANDING, HOW 1672 01:03:21,960 --> 01:03:23,000 THOSE INFANTS AND CHILDREN 1673 01:03:23,000 --> 01:03:24,800 DEVELOP THOSE SKILLS AND HOW WE 1674 01:03:24,800 --> 01:03:28,600 CAN USE INTERVENTION PROTOCOL TO 1675 01:03:28,600 --> 01:03:29,600 IMPROVE THOSE ACTIVITIES AND 1676 01:03:29,600 --> 01:03:32,840 THOSE ABILITIES IN THOSE 1677 01:03:32,840 --> 01:03:35,000 CHILDREN. 1678 01:03:35,000 --> 01:03:38,120 SO, WE DEAL WITH DIVERSITY, 1679 01:03:38,120 --> 01:03:39,080 EQUITY, INCLUSION AND 1680 01:03:39,080 --> 01:03:40,160 ACCESSIBILITY IN RESEARCH AND 1681 01:03:40,160 --> 01:03:40,520 MENTORING. 1682 01:03:40,520 --> 01:03:42,400 WHEN WE TALK ABOUT RECRUITING 1683 01:03:42,400 --> 01:03:44,280 PARTICIPANTS, WHEN TALKING ABOUT 1684 01:03:44,280 --> 01:03:45,600 RECRUITING GRADUATE STUDENTS OR 1685 01:03:45,600 --> 01:03:48,880 FOR RESEARCH AND FOR TRAINING. 1686 01:03:48,880 --> 01:03:50,280 SO I CONSTANTLY THINK THIS IS 1687 01:03:50,280 --> 01:03:51,120 NOT AN ISSUE. 1688 01:03:51,120 --> 01:03:54,360 THIS IS SOMETHING WE NEED TO DO 1689 01:03:54,360 --> 01:03:56,680 TO MAKE OUR RESEARCH MORE 1690 01:03:56,680 --> 01:03:57,280 APPLICABLE TO THE SOCIETY, TO 1691 01:03:57,280 --> 01:04:00,040 MAKE SURE WE HAVE THE NEXT 1692 01:04:00,040 --> 01:04:02,920 GENERATION OF RESEARCHERS WHO 1693 01:04:02,920 --> 01:04:05,200 HAS GOOD UNDERSTANDING ABOUT 1694 01:04:05,200 --> 01:04:06,240 DIVERSITY AND HAVE A GOOD 1695 01:04:06,240 --> 01:04:10,240 TRAINING ON THAT. 1696 01:04:10,240 --> 01:04:10,560 NEXT SLIDE. 1697 01:04:10,560 --> 01:04:13,280 I WAS FORTUNATE TO HAVE VERY 1698 01:04:13,280 --> 01:04:15,760 DIVERSE AND DOCTORAL STUDENTS 1699 01:04:15,760 --> 01:04:17,280 AND ALSO EVEN UNDERGRADUATE 1700 01:04:17,280 --> 01:04:19,080 STUDENTS THAT CAME FROM A 1701 01:04:19,080 --> 01:04:23,440 VARIETY OF RACES AND 1702 01:04:23,440 --> 01:04:24,720 BACKGROUNDS, AFRICAN-AMERICAN, 1703 01:04:24,720 --> 01:04:26,080 ASIAN, HISPANIC BACKGROUND, 1704 01:04:26,080 --> 01:04:26,320 ET CETERA. 1705 01:04:26,320 --> 01:04:29,240 AND ALSO THEY CAME FROM 1706 01:04:29,240 --> 01:04:29,720 DIFFERENT EDUCATIONAL 1707 01:04:29,720 --> 01:04:30,320 BACKGROUNDS. 1708 01:04:30,320 --> 01:04:31,760 FOR EXAMPLE, SOME CAME FROM 1709 01:04:31,760 --> 01:04:33,080 BIOLOGY, PHYSICAL EDUCATION, 1710 01:04:33,080 --> 01:04:36,960 PHYSICAL THERAPY, MEDICINE, 1711 01:04:36,960 --> 01:04:38,160 BIOMEDICAL ENGINEERING. 1712 01:04:38,160 --> 01:04:39,880 SO WE HAVE SO MANY PEOPLE 1713 01:04:39,880 --> 01:04:42,120 INTERESTED IN OUR FIELD. 1714 01:04:42,120 --> 01:04:42,600 THAT'S GREAT. 1715 01:04:42,600 --> 01:04:46,640 AND ALSO I AM VERY PROUD THAT 1716 01:04:46,640 --> 01:04:47,080 HALF OF THEM ARE WOMEN 1717 01:04:47,080 --> 01:04:48,280 SCIENTISTS AND CLINICIANS. 1718 01:04:48,280 --> 01:04:50,320 SO WE BASICALLY TRAIN AND 1719 01:04:50,320 --> 01:04:52,160 PREPARE THE NEXT GENERATION OF 1720 01:04:52,160 --> 01:04:54,360 RESEARCHERS FOR OUR FIELD. 1721 01:04:54,360 --> 01:05:00,760 NEXT SLIDE, PLEASE. 1722 01:05:00,760 --> 01:05:02,560 SO, HERE IS MY MENTORING 1723 01:05:02,560 --> 01:05:02,840 PHILOSOPHY. 1724 01:05:02,840 --> 01:05:07,200 WHEN I MENTOR MY STUDENTS, I 1725 01:05:07,200 --> 01:05:08,320 WANT TO LET THEM KNOW THAT I 1726 01:05:08,320 --> 01:05:10,920 WANT TO PROMOTE THEIR RESEARCH 1727 01:05:10,920 --> 01:05:12,880 INDEPENDENCE AND ALSO WANT THEM 1728 01:05:12,880 --> 01:05:15,000 TO KNOW RESEARCH IS ABOUT 1729 01:05:15,000 --> 01:05:15,320 COLLABORATION. 1730 01:05:15,320 --> 01:05:17,840 YOU WANT TO BE PART OF THE TEAM 1731 01:05:17,840 --> 01:05:19,440 BUT ALSO YOU WILL BE INDEPENDENT 1732 01:05:19,440 --> 01:05:21,480 TO LEAD CERTAIN PROJECTS. 1733 01:05:21,480 --> 01:05:24,000 AND ALSO I WANT TO PROVIDE THEM 1734 01:05:24,000 --> 01:05:24,880 WITH EXPERIENCE WITH THE 1735 01:05:24,880 --> 01:05:28,320 CLINICAL POPULATION, WHETHER 1736 01:05:28,320 --> 01:05:30,000 DOWN SYNDROME OR THE CEREBRAL 1737 01:05:30,000 --> 01:05:30,200 PALSY. 1738 01:05:30,200 --> 01:05:33,080 AND I WANT TO UNDERSTAND THE 1739 01:05:33,080 --> 01:05:35,320 NEEDS OF THESE COMBINATIONS AND 1740 01:05:35,320 --> 01:05:35,760 WHY WE DO RESEARCH? 1741 01:05:35,760 --> 01:05:37,800 WE TRY TO GAIN KNOWLEDGE AND USE 1742 01:05:37,800 --> 01:05:38,800 THE KNOWLEDGE TO HELP THOSE 1743 01:05:38,800 --> 01:05:40,800 CLINICAL POPULATIONS, HELP THEM 1744 01:05:40,800 --> 01:05:42,680 TO IMPROVE THEIR QUALITY OF 1745 01:05:42,680 --> 01:05:42,880 LIFE. 1746 01:05:42,880 --> 01:05:48,080 AND CERTAINLY I ALSO WANT THE 1747 01:05:48,080 --> 01:05:50,200 STUDENTS TO HAVE EXPERIENCE 1748 01:05:50,200 --> 01:05:50,680 TRAINING OR SUPERVISING 1749 01:05:50,680 --> 01:05:51,200 UNDERGRADUATE STUDENTS. 1750 01:05:51,200 --> 01:05:55,480 SO WE BASICALLY HAVE A NICE 1751 01:05:55,480 --> 01:05:59,080 COMBINATION OF DIFFERENT LEVELS 1752 01:05:59,080 --> 01:05:59,680 OF TRAININGS AND I THINK THAT 1753 01:05:59,680 --> 01:06:06,200 FORMS A VERY ACTIVE TEAM AND TO 1754 01:06:06,200 --> 01:06:09,120 PROVIDE EXCELLENT TRAINING AND 1755 01:06:09,120 --> 01:06:09,400 EXPERIENCE. 1756 01:06:09,400 --> 01:06:12,840 NEXT SLIDE, PLEASE. 1757 01:06:12,840 --> 01:06:16,000 I ALWAYS DO WEEKLY GROUP 1758 01:06:16,000 --> 01:06:16,600 MEETINGS. 1759 01:06:16,600 --> 01:06:18,480 DOESN'T MATTER HOW BUSY I AM. 1760 01:06:18,480 --> 01:06:22,120 I THINK THIS CREATES A VERY FAIR 1761 01:06:22,120 --> 01:06:24,960 AND RESPECTFUL MEETING 1762 01:06:24,960 --> 01:06:25,640 ENVIRONMENT. 1763 01:06:25,640 --> 01:06:29,840 SO WE -- I CONSIDER OUR STUDENTS 1764 01:06:29,840 --> 01:06:32,680 WITH STRENGTH AND TO LEAD 1765 01:06:32,680 --> 01:06:33,920 DISCUSSIONS OR PROJECTS BECAUSE 1766 01:06:33,920 --> 01:06:36,160 THINKING ABOUT SOMEONE COMING 1767 01:06:36,160 --> 01:06:37,160 FROM ENGINEERING BACKGROUND, 1768 01:06:37,160 --> 01:06:38,440 COMPARED TO SOMEONE COMING FROM 1769 01:06:38,440 --> 01:06:40,280 EDUCATION, THEY HAVE DIFFERENT 1770 01:06:40,280 --> 01:06:41,000 EDUCATIONAL BACKGROUNDS BUT THEY 1771 01:06:41,000 --> 01:06:41,600 HAVE SAME INTEREST. 1772 01:06:41,600 --> 01:06:45,000 SO I WANT THEM TO LEAD THE 1773 01:06:45,000 --> 01:06:46,160 PROJECT WHICH FITS THEIR ABILITY 1774 01:06:46,160 --> 01:06:47,760 BUT AT THE SAME TIME GIVE THEM 1775 01:06:47,760 --> 01:06:51,960 ROOM TO IMPROVE AND THEIR 1776 01:06:51,960 --> 01:06:53,920 RESEARCH HORIZON. 1777 01:06:53,920 --> 01:06:56,200 AND I WANT ALSO TO USE 1778 01:06:56,200 --> 01:06:57,520 INDIVIDUAL MEETING TO TRULY 1779 01:06:57,520 --> 01:06:58,720 BUILD A STRONG RELATIONSHIP 1780 01:06:58,720 --> 01:07:02,120 BETWEEN ME AND THE STUDENT. 1781 01:07:02,120 --> 01:07:04,360 AND SO DURING THOSE MEETINGS, WE 1782 01:07:04,360 --> 01:07:07,200 CAN TALK ABOUT ANYTHING, NOT 1783 01:07:07,200 --> 01:07:07,720 JUST RESEARCH. 1784 01:07:07,720 --> 01:07:09,120 BECAUSE THE STUDENTS THEY ARE 1785 01:07:09,120 --> 01:07:12,000 LIVING THEIR LIVES. 1786 01:07:12,000 --> 01:07:14,560 THEY MAY HAVE FINANCIAL 1787 01:07:14,560 --> 01:07:15,800 CONSTRAINTS AND SO THAT IS KIND 1788 01:07:15,800 --> 01:07:17,720 OF, DURING THE MEETING, WE CAN 1789 01:07:17,720 --> 01:07:19,440 DISCUSS THIS AND WE CAN TALK 1790 01:07:19,440 --> 01:07:20,480 ABOUT SOLUTIONS. 1791 01:07:20,480 --> 01:07:23,000 I TRY REALLY HARD TO PROVIDE 1792 01:07:23,000 --> 01:07:25,720 FINANCIAL SUPPORT BUT THERE ARE 1793 01:07:25,720 --> 01:07:26,480 OTHER THINGS AND OTHER FINANCIAL 1794 01:07:26,480 --> 01:07:26,760 SUPPORTS. 1795 01:07:26,760 --> 01:07:30,120 AND I THINK AS A MENTOR, IT'S MY 1796 01:07:30,120 --> 01:07:34,480 JOB TO PROVIDE STRONG SUPPORT TO 1797 01:07:34,480 --> 01:07:35,480 MY STUDENTS. 1798 01:07:35,480 --> 01:07:38,200 SO PREPARE MY STUDENTS FOR THE 1799 01:07:38,200 --> 01:07:40,400 DREAM CAREER AND ALSO ENCOURAGE 1800 01:07:40,400 --> 01:07:44,240 THEM TO THINK BIG AND NOT JUST 1801 01:07:44,240 --> 01:07:46,040 DURING 4 OR 5 YEARS OF DOCTORAL 1802 01:07:46,040 --> 01:07:49,320 TRAINING OR STUDY, BUT THINK BIG 1803 01:07:49,320 --> 01:07:51,360 THE THINGS YOU WANT TO ACHIEVE. 1804 01:07:51,360 --> 01:07:53,200 THEY ALWAYS HAVE THE DREAM IN 1805 01:07:53,200 --> 01:07:54,160 THEIR CAREER. 1806 01:07:54,160 --> 01:07:55,600 THEY WANT TO ACCOMPLISH AND IT 1807 01:07:55,600 --> 01:07:57,840 STARTS FROM THE TRAINING IN MY 1808 01:07:57,840 --> 01:07:58,120 LAB. 1809 01:07:58,120 --> 01:08:01,680 NEXT SLIDE, PLEASE. 1810 01:08:01,680 --> 01:08:05,600 AS I SAID, A MENTOR MENTEE 1811 01:08:05,600 --> 01:08:06,200 RELATIONSHIP IS VERY IMPORTANT 1812 01:08:06,200 --> 01:08:06,640 TO BUILD. 1813 01:08:06,640 --> 01:08:07,640 IT TAKES TIME. 1814 01:08:07,640 --> 01:08:11,200 AND SO YOU HAVE TO SHOW RESPECT 1815 01:08:11,200 --> 01:08:11,520 ALL THE TIME. 1816 01:08:11,520 --> 01:08:13,640 YOU HAVE TO TREAT YOUR STUDENTS. 1817 01:08:13,640 --> 01:08:18,560 FOR ME JUST LIKE MY CHILD. 1818 01:08:18,560 --> 01:08:20,520 BECAUSE I PUT PERSONAL 1819 01:08:20,520 --> 01:08:22,160 PERSPECTIVE AND I WANT TO HAVE A 1820 01:08:22,160 --> 01:08:23,520 PERSONAL CONNECTION WITH MY 1821 01:08:23,520 --> 01:08:24,480 STUDENTS. 1822 01:08:24,480 --> 01:08:26,640 AND SO, THEY WILL BE GONE AFTER 1823 01:08:26,640 --> 01:08:28,200 THEY GRADUATE FROM MY SCHOOL, 1824 01:08:28,200 --> 01:08:30,760 BUT I WILL KEEP THAT 1825 01:08:30,760 --> 01:08:32,600 RELATIONSHIP ONGOING AND I WANT 1826 01:08:32,600 --> 01:08:34,920 TO SEE HOW THEY GROW AFTER THEY 1827 01:08:34,920 --> 01:08:36,440 GRADUATE FROM THE SCHOOL. 1828 01:08:36,440 --> 01:08:38,440 AND THEY GO ON TO THEIR OWN 1829 01:08:38,440 --> 01:08:38,680 CAREER. 1830 01:08:38,680 --> 01:08:42,840 AND ALSO BE REALLY PATIENT AND 1831 01:08:42,840 --> 01:08:45,480 BE CAREFUL. 1832 01:08:45,480 --> 01:08:46,920 AND SO THAT IS THE THING I 1833 01:08:46,920 --> 01:08:48,440 LEARNED THROUGH THE YEARS AND 1834 01:08:48,440 --> 01:08:53,720 HOW TO CHOOSE THE RIGHT WORK TO 1835 01:08:53,720 --> 01:08:54,240 ADDRESS YOUR CONCERNS, 1836 01:08:54,240 --> 01:08:56,880 SUGGESTIONS AND AT THE SAME 1837 01:08:56,880 --> 01:08:57,760 TIME, PROTECT YOUR STUDENTS TO 1838 01:08:57,760 --> 01:09:00,960 PROVIDE THAT KIND OF RESPECTFUL 1839 01:09:00,960 --> 01:09:01,240 ENVIRONMENT. 1840 01:09:01,240 --> 01:09:02,040 AND I LEARNED A LOT. 1841 01:09:02,040 --> 01:09:05,480 I KNOW MEMBERSHIP IS NOT ONE WAY 1842 01:09:05,480 --> 01:09:05,720 TRAFFIC. 1843 01:09:05,720 --> 01:09:06,160 IT'S TWO WAY. 1844 01:09:06,160 --> 01:09:07,240 STUDENTS LEARN A LOT OF THINGS 1845 01:09:07,240 --> 01:09:08,960 FROM ME AND ALSO I LEARN A LOT 1846 01:09:08,960 --> 01:09:10,840 OF THINGS FROM STUDENTS AND I'M 1847 01:09:10,840 --> 01:09:13,440 PROUD THAT ALL MY FORMER 1848 01:09:13,440 --> 01:09:14,400 DOCTORAL STUDENTS LEARNED IT 1849 01:09:14,400 --> 01:09:15,200 UPON GRADUATION. 1850 01:09:15,200 --> 01:09:17,520 THAT'S NOT EASY IN THE JOB 1851 01:09:17,520 --> 01:09:20,760 MARKET BUT THEY ARE ALL VERY 1852 01:09:20,760 --> 01:09:21,080 SUCCESSFUL. 1853 01:09:21,080 --> 01:09:23,760 SO I AM VERY PROUD OF THAT. 1854 01:09:23,760 --> 01:09:25,120 NEXT SLIDE, PLEASE. 1855 01:09:25,120 --> 01:09:28,160 SO, I AM PROFESSOR IN A COLLEGE 1856 01:09:28,160 --> 01:09:31,400 SO TEACHING IS PART OF MY DUTY. 1857 01:09:31,400 --> 01:09:33,120 AND I ENJOY TEACHING. 1858 01:09:33,120 --> 01:09:36,320 THE REASON I ENJOY TEACHING IS I 1859 01:09:36,320 --> 01:09:37,600 CAN SHARE MY KNOWLEDGE WITH THE 1860 01:09:37,600 --> 01:09:40,920 STUDENTS AND ALSO I CAN KIND OF 1861 01:09:40,920 --> 01:09:43,160 GIVE THEM THE PERSPECTIVE ABOUT 1862 01:09:43,160 --> 01:09:45,040 RESEARCH AND INTEGRATE RESEARCH 1863 01:09:45,040 --> 01:09:45,960 INTO MY TEACHING. 1864 01:09:45,960 --> 01:09:50,280 AND ESPECIALLY THINKING ABOUT 1865 01:09:50,280 --> 01:09:52,520 OUR UNDERGRADUATES. 1866 01:09:52,520 --> 01:09:53,920 MORE THAN HALF OF THE STUDENTS 1867 01:09:53,920 --> 01:09:54,520 ARE AFRICAN-AMERICAN OR 1868 01:09:54,520 --> 01:09:56,280 HISPANIC. 1869 01:09:56,280 --> 01:09:57,160 SO I TRY TO CLUE THEM INTO THE 1870 01:09:57,160 --> 01:09:58,720 RESEARCH AND SAY HERE IS THE 1871 01:09:58,720 --> 01:09:59,520 PROBLEM. 1872 01:09:59,520 --> 01:10:01,600 NOW THIS IS KNOWLEDGE WE HAVE 1873 01:10:01,600 --> 01:10:01,960 ALREADY. 1874 01:10:01,960 --> 01:10:03,240 WHAT ARE SOLUTIONS IN WHAT CAN 1875 01:10:03,240 --> 01:10:06,040 WE DO TO ADVANCE THE FIELD? 1876 01:10:06,040 --> 01:10:08,160 TRY TO ENCOURAGE UNDERGRADUATES 1877 01:10:08,160 --> 01:10:10,200 TO THINK ABOUT RESEARCH. 1878 01:10:10,200 --> 01:10:12,400 AND WE HAVE UNDERGRATIN TERNSHIP 1879 01:10:12,400 --> 01:10:13,320 FOR THOSE STUDENTS. 1880 01:10:13,320 --> 01:10:17,120 SO I -- UNDERGRADUATE 1881 01:10:17,120 --> 01:10:17,440 INTERNSHIPS. 1882 01:10:17,440 --> 01:10:18,640 SO I'M LUCKY TO HAVE THEM 1883 01:10:18,640 --> 01:10:20,480 WORKING IN MY LAB FOR THAT. 1884 01:10:20,480 --> 01:10:24,960 NEXT SLIDE, PLEASE. 1885 01:10:24,960 --> 01:10:26,280 THE OTHER THING I DID, THIS IS 1886 01:10:26,280 --> 01:10:29,000 NOW TRULY RELEVANT TO RESEARCH. 1887 01:10:29,000 --> 01:10:32,160 I DEVELOP INTERNATIONAL OUTREACH 1888 01:10:32,160 --> 01:10:32,400 PROGRAM. 1889 01:10:32,400 --> 01:10:33,320 THIS IS A PROGRAM IN CHINA. 1890 01:10:33,320 --> 01:10:37,080 SO WE HAVE A PARTNERSHIP WITH 1891 01:10:37,080 --> 01:10:38,160 BEIJING UNIVERSITY. 1892 01:10:38,160 --> 01:10:41,600 EACH YEAR IN MAY, I BRING ABOUT 1893 01:10:41,600 --> 01:10:43,400 50 STUDENTS FROM OUR 1894 01:10:43,400 --> 01:10:46,160 UNDERGRADUATE PROGRAM TO CHINA 1895 01:10:46,160 --> 01:10:53,920 AND SO WE WILL HAVE THE LOCAL 1896 01:10:53,920 --> 01:10:54,440 PROFESSORS TEACH CHINESE 1897 01:10:54,440 --> 01:10:56,800 MEDICINE, CHINESE PRESENTATIONS, 1898 01:10:56,800 --> 01:10:57,080 ET CETERA. 1899 01:10:57,080 --> 01:10:58,680 SO THOSE ARE THE NEW 1900 01:10:58,680 --> 01:11:01,720 PERSPECTIVES FOR OUR STUDENTS. 1901 01:11:01,720 --> 01:11:05,560 AND SO, PROVIDE STUDENTS WITH 1902 01:11:05,560 --> 01:11:06,960 DIFFERENT OPPORTUNITIES TO 1903 01:11:06,960 --> 01:11:09,000 INTERACT WITH DIFFERENT PEOPLE 1904 01:11:09,000 --> 01:11:10,160 IN DIFFERENT COUNTRIES. 1905 01:11:10,160 --> 01:11:12,560 EVEN THOUGH THIS IS A TWO-WEEK 1906 01:11:12,560 --> 01:11:14,360 PROGRAM, BUT STUDENTS REALLY, 1907 01:11:14,360 --> 01:11:16,080 REALLY THINK THIS IS A WONDERFUL 1908 01:11:16,080 --> 01:11:16,600 PROGRAM TO LEARN SO MANY 1909 01:11:16,600 --> 01:11:17,000 DIFFERENT THINGS. 1910 01:11:17,000 --> 01:11:18,840 THAT TRIGGERS THEIR INTEREST IN 1911 01:11:18,840 --> 01:11:19,920 FURTHER RESEARCH. 1912 01:11:19,920 --> 01:11:26,160 NEXT SLIDE, PLEASE. 1913 01:11:26,160 --> 01:11:29,880 I AM LUCKY ENOUGH BEING 1914 01:11:29,880 --> 01:11:31,520 RECIPIENT FOR THIS NIH 1915 01:11:31,520 --> 01:11:31,840 INITIATIVE. 1916 01:11:31,840 --> 01:11:36,000 AND I'M GOING TO RECRUIT TWO 1917 01:11:36,000 --> 01:11:36,640 DOCTORAL STUDENTS, UNDERGRADUATE 1918 01:11:36,640 --> 01:11:38,720 STUDENTS TO PROVIDE US WITH 1919 01:11:38,720 --> 01:11:39,160 INTENSIVE TRAINING. 1920 01:11:39,160 --> 01:11:42,160 NEXT SLIDE, PLEASE. 1921 01:11:42,160 --> 01:11:44,960 SO THIS IS OUTLINE MY TRAINING 1922 01:11:44,960 --> 01:11:45,160 PLAN. 1923 01:11:45,160 --> 01:11:46,680 I HAVE TRAINING PLAN BUT I DON'T 1924 01:11:46,680 --> 01:11:49,400 THINK I HAVE TIME TO GO OVER 1925 01:11:49,400 --> 01:11:49,600 THOSE. 1926 01:11:49,600 --> 01:11:50,520 BUT BASICALLY I'M TRAINING THEM 1927 01:11:50,520 --> 01:11:52,040 WITH ALL DIFFERENT PERSPECTIVES. 1928 01:11:52,040 --> 01:11:57,120 FOR EXAMPLE, I WANT THEM TO GAIN 1929 01:11:57,120 --> 01:11:58,120 RESEARCH PERSPECTIVE, INTEREST 1930 01:11:58,120 --> 01:12:01,160 OF HUMAN FACTOR RECRUITMENT. 1931 01:12:01,160 --> 01:12:04,040 I WANT THEM TO IMMERSE 1932 01:12:04,040 --> 01:12:06,520 THEMSELVES INTO THE LOCAL 1933 01:12:06,520 --> 01:12:06,800 COMMUNITY. 1934 01:12:06,800 --> 01:12:09,800 TRY TO SPREAD OUT AND MAKE 1935 01:12:09,800 --> 01:12:10,880 CONNECTION WITH LOCAL COMMUNITY 1936 01:12:10,880 --> 01:12:13,840 AND TRY TO HELP US TO REACH 1937 01:12:13,840 --> 01:12:17,360 THOSE OTHER REPRESENTATIVES AND 1938 01:12:17,360 --> 01:12:18,160 PARTICIPANTS FOR OUR RESEARCH 1939 01:12:18,160 --> 01:12:18,560 STUDY. 1940 01:12:18,560 --> 01:12:22,120 AND ALSO I WANT THEM TO HAVE 1941 01:12:22,120 --> 01:12:24,640 EXPERIENCE LOOKING AT RESEARCH, 1942 01:12:24,640 --> 01:12:29,240 CLINICAL RESEARCH AT DIFFERENT 1943 01:12:29,240 --> 01:12:30,160 INSTITUTIONS, AND JUST BY 1944 01:12:30,160 --> 01:12:32,760 OBSERVATION THOSE STUDENTS CAN 1945 01:12:32,760 --> 01:12:36,080 GAIN A LOT MORE EXPERIENCE AND 1946 01:12:36,080 --> 01:12:39,080 EXPAND THEIR RESEARCH HORIZON. 1947 01:12:39,080 --> 01:12:40,520 AND AT GEORGIA STATE WE HAVE 1948 01:12:40,520 --> 01:12:42,120 LOTS OF RESEARCH SEMINARS AND 1949 01:12:42,120 --> 01:12:44,640 ALSO DEIA INITIATIVES. 1950 01:12:44,640 --> 01:12:47,880 AND SO THOSE STUDENTS WILL BE 1951 01:12:47,880 --> 01:12:51,560 IMMERSED IN THIS ACTIVITIES AND 1952 01:12:51,560 --> 01:12:54,040 ATTEND THE SEMINARS ACTIVITIES 1953 01:12:54,040 --> 01:12:54,680 AND GAIN THE KNOWLEDGE AND BRING 1954 01:12:54,680 --> 01:12:55,360 THE KNOWLEDGE BACK TO MY GROUP. 1955 01:12:55,360 --> 01:12:57,000 AND SHARE THE KNOWLEDGE WITH US. 1956 01:12:57,000 --> 01:12:59,680 AND TO HAVE -- IN MY GROUP KNOW 1957 01:12:59,680 --> 01:13:02,920 WHAT IS GOING ON IN OUR 1958 01:13:02,920 --> 01:13:06,120 INSTITUTIONS AND SO ON. 1959 01:13:06,120 --> 01:13:09,880 NEXT SLIDE, PLEASE. 1960 01:13:09,880 --> 01:13:11,400 SO, BECAUSE I HAVE LIMITED TIME, 1961 01:13:11,400 --> 01:13:12,440 I WANT TO SUMMARIZE WHAT I DID 1962 01:13:12,440 --> 01:13:16,560 OVER THE PAST 15 YEARS. 1963 01:13:16,560 --> 01:13:19,160 AND MY EXPERIENCE TEACH ME TO BE 1964 01:13:19,160 --> 01:13:21,000 PATIENT, BE GRATEFUL AND BE OF 1965 01:13:21,000 --> 01:13:22,120 GOOD MIND TO ESPECIALLY THOSE 1966 01:13:22,120 --> 01:13:24,600 WHO CAME FROM UNDERREPRESENTED 1967 01:13:24,600 --> 01:13:26,480 MINORITY BACKGROUNDS. 1968 01:13:26,480 --> 01:13:27,160 BECAUSE A LOT OF THEM ARE REALLY 1969 01:13:27,160 --> 01:13:27,600 SHY. 1970 01:13:27,600 --> 01:13:32,840 THEY DON'T KNOW HOW TO KIND OF 1971 01:13:32,840 --> 01:13:33,440 COMMUNICATE OR SURE THAT THEY 1972 01:13:33,440 --> 01:13:33,960 ARE WITH YOU. 1973 01:13:33,960 --> 01:13:35,440 SO YOU NEED TO TAKE TIME. 1974 01:13:35,440 --> 01:13:39,560 YOU NEED TO NURTURE THE 1975 01:13:39,560 --> 01:13:39,840 STUDENTS. 1976 01:13:39,840 --> 01:13:41,520 WHEN THEY HAVE CONCERNS AND 1977 01:13:41,520 --> 01:13:42,920 QUESTIONS, ALSO ASK THEM TO 1978 01:13:42,920 --> 01:13:44,960 ENCOURAGE THEM TO TALK TO THEIR 1979 01:13:44,960 --> 01:13:46,480 FELLOW STUDENTS IN THE LAB 1980 01:13:46,480 --> 01:13:49,120 BECAUSE THEY WILL GET THE 1981 01:13:49,120 --> 01:13:50,640 SUGGESTIONS FROM THEIR STUDENT 1982 01:13:50,640 --> 01:13:52,320 PERSPECTIVE AND AGAIN, I THINK 1983 01:13:52,320 --> 01:13:54,160 THIS IS SOMETHING I REALLY ENJOY 1984 01:13:54,160 --> 01:13:55,920 TO DO AND I'M GOING TO CONTINUE 1985 01:13:55,920 --> 01:14:00,040 TO DO THIS AND FOLLOW THE DEIA 1986 01:14:00,040 --> 01:14:02,160 INITIATIVE IN MY CAREER. 1987 01:14:02,160 --> 01:14:04,400 THANK YOU. 1988 01:14:04,400 --> 01:14:06,680 >> THANK YOU VERY MUCH, DOCTOR 1989 01:14:06,680 --> 01:14:08,640 FOR YOUR GREAT EFFORT, TRAINING 1990 01:14:08,640 --> 01:14:13,960 AND MENTORING, ESPECIALLY FOR 1991 01:14:13,960 --> 01:14:14,600 THOSE UNDERREPRESENTED TRAINEES. 1992 01:14:14,600 --> 01:14:18,960 WE ARE OPEN FOR QUESTIONS NOW. 1993 01:14:18,960 --> 01:14:20,920 LET'S GO BACK TO THE ROOM. 1994 01:14:20,920 --> 01:14:26,120 I NOTICED THE CHAT IS VERY 1995 01:14:26,120 --> 01:14:31,920 ACTIVE AND THING SUJATA BARDHAM 1996 01:14:31,920 --> 01:14:32,760 ADDRESSED ALL THE QUESTIONS. 1997 01:14:32,760 --> 01:14:34,440 IF YOU HAVE ADDITIONAL 1998 01:14:34,440 --> 01:14:35,960 QUESTIONS, PLEASE SPEAK UP. 1999 01:14:35,960 --> 01:14:38,360 THANK YOU FOR THE PANELISTS TO 2000 01:14:38,360 --> 01:14:40,960 TURN ON YOUR VIDEO. 2001 01:14:40,960 --> 01:14:42,880 WHILE WE ARE WAITING FOR OTHERS, 2002 01:14:42,880 --> 01:14:45,240 I HAVE ONE QUESTION FOR 2003 01:14:45,240 --> 01:14:47,960 DR. JIANHUA WU. 2004 01:14:47,960 --> 01:14:49,080 I BELIEVE ONE OF THE BENEFITS TO 2005 01:14:49,080 --> 01:14:55,080 INCREASE THE DIVERSITY AMONG 2006 01:14:55,080 --> 01:14:58,840 TRAINEES COULD HELP INCREASE THE 2007 01:14:58,840 --> 01:15:00,600 ENGAGEMENT OF OUR 2008 01:15:00,600 --> 01:15:01,400 UNDERREPRESENTED GROUP IN THE 2009 01:15:01,400 --> 01:15:02,160 RESEARCH. 2010 01:15:02,160 --> 01:15:03,960 DO YOU AGREE? 2011 01:15:03,960 --> 01:15:04,680 DO YOU HAVE ANY EXAMPLES? 2012 01:15:04,680 --> 01:15:06,560 WHAT KIND OF STRATEGIES DO YOU 2013 01:15:06,560 --> 01:15:08,840 USE FOR THAT? 2014 01:15:08,840 --> 01:15:10,800 >> JIANHUA WU: I AGREE. 2015 01:15:10,800 --> 01:15:14,200 WE ACTUALLY BENEFITED FROM 2016 01:15:14,200 --> 01:15:15,440 HAVING STUDENTS FROM 2017 01:15:15,440 --> 01:15:16,040 UNDERREPRESENTED BACKGROUNDS. 2018 01:15:16,040 --> 01:15:18,960 FOR EXAMPLE, WE HAVE A LARGE 2019 01:15:18,960 --> 01:15:22,080 HISPANIC COMMUNITY IN ATLANTA 2020 01:15:22,080 --> 01:15:22,280 AREA. 2021 01:15:22,280 --> 01:15:25,080 BUT WE TYPICALLY DO NOT HAVE 2022 01:15:25,080 --> 01:15:28,680 ANYBODY IN MY LAB WHO CAN SPEAK 2023 01:15:28,680 --> 01:15:30,120 SPANISH. 2024 01:15:30,120 --> 01:15:33,800 SO WE -- I HAD ONE GRADUATE 2025 01:15:33,800 --> 01:15:34,920 STUDENT HISPANIC GRADUATE 2026 01:15:34,920 --> 01:15:36,720 STUDENT WHO JUST GRADUATED AND 2027 01:15:36,720 --> 01:15:39,880 HE HELPED US TO REACH OUT TO 2028 01:15:39,880 --> 01:15:42,120 LOCAL COMMUNITIES AND RECRUIT 2029 01:15:42,120 --> 01:15:43,880 SOME SUBJECTS, PARTICIPANTS FOR 2030 01:15:43,880 --> 01:15:46,880 OUR STUDY. 2031 01:15:46,880 --> 01:15:48,920 AND THE PARENTS DO NOT SPEAK 2032 01:15:48,920 --> 01:15:51,280 ENGLISH BUT THEY CAN SPEAK 2033 01:15:51,280 --> 01:15:51,520 SPANISH. 2034 01:15:51,520 --> 01:15:54,280 SO MY STUDENT REACHED TO THEM 2035 01:15:54,280 --> 01:15:55,360 AND PROVIDED INTERPRETATION TO 2036 01:15:55,360 --> 01:15:58,640 BRING THE PARTICIPANTS INTO OUR 2037 01:15:58,640 --> 01:16:00,080 LAB AND SENT BACK HOME. 2038 01:16:00,080 --> 01:16:02,720 SO THAT KIND OF CREATES THE KIND 2039 01:16:02,720 --> 01:16:04,520 OF ENVIRONMENT. 2040 01:16:04,520 --> 01:16:08,320 SO WE ARE WELCOMING THOSE 2041 01:16:08,320 --> 01:16:08,920 UNDERREPRESENTED COMMUNITY TO 2042 01:16:08,920 --> 01:16:11,920 COME TO OUR LAB TO PARTICIPATE. 2043 01:16:11,920 --> 01:16:13,160 WE ALSO GO TO THEIR HOME TO 2044 01:16:13,160 --> 01:16:16,680 COLLECT DATA, TO SAVE THEIR 2045 01:16:16,680 --> 01:16:18,000 TRAVEL AND TRANSPORTATION AND 2046 01:16:18,000 --> 01:16:21,320 TRY TO STIMULATE THAT WE CAN 2047 01:16:21,320 --> 01:16:21,640 REACH TO YOU. 2048 01:16:21,640 --> 01:16:22,440 YOU DON'T HAVE TO TRAVEL. 2049 01:16:22,440 --> 01:16:23,960 AND SO WE CAN BRING EVERYTHING 2050 01:16:23,960 --> 01:16:26,040 TO YOU BUT YOU CAN ALSO 2051 01:16:26,040 --> 01:16:29,680 PARTICIPATE AND BENEFIT FROM THE 2052 01:16:29,680 --> 01:16:29,880 STUDY. 2053 01:16:29,880 --> 01:16:35,200 >> THANK YOU, THAT'S GREAT. 2054 01:16:35,200 --> 01:16:37,320 >> THANK YOU FOR ALL THE 2055 01:16:37,320 --> 01:16:38,120 SPEAKERS BUT I WOULD JUST LIKE 2056 01:16:38,120 --> 01:16:40,560 TO ADD ON WHAT DR. JIANHUA WU 2057 01:16:40,560 --> 01:16:40,760 SAID. 2058 01:16:40,760 --> 01:16:42,240 I THINK YOU'RE JUST PRACTICING 2059 01:16:42,240 --> 01:16:46,040 WHAT WE HAVE BEEN HEARING, 2060 01:16:46,040 --> 01:16:49,000 ESPECIALLY DURING OUR LISTENING 2061 01:16:49,000 --> 01:16:50,920 SESSION AND ALSO YESTERDAY IS 2062 01:16:50,920 --> 01:16:54,120 HAVING THE BENEFIT OF HAVING A 2063 01:16:54,120 --> 01:16:57,320 DIVERSE RESEARCH TEAM. 2064 01:16:57,320 --> 01:16:58,840 AND ALSO FROM PARTICIPANTS WHO 2065 01:16:58,840 --> 01:17:04,600 WANT TO SEE MEMBERS OF THEIR 2066 01:17:04,600 --> 01:17:05,680 COMMUNITY INTEGRATED AS PART OF 2067 01:17:05,680 --> 01:17:06,760 THE RESEARCH TEAM. 2068 01:17:06,760 --> 01:17:07,960 SO THANK YOU FOR YOUR WORK ON 2069 01:17:07,960 --> 01:17:12,480 THAT AND IN FACT, WHAT YOU HAD 2070 01:17:12,480 --> 01:17:14,040 MENTIONED IS THERE IS A TONE FOR 2071 01:17:14,040 --> 01:17:14,240 THAT. 2072 01:17:14,240 --> 01:17:16,080 IT'S CALLED REVERSE MENTORING. 2073 01:17:16,080 --> 01:17:19,320 AND I HOPE THAT IS WHAT WE CAN 2074 01:17:19,320 --> 01:17:21,400 ACHIEVE FOR ENCOURAGING OUR 2075 01:17:21,400 --> 01:17:26,120 TRAINEES WHO REALLY NEED 2076 01:17:26,120 --> 01:17:27,720 MENTORSHIP AND SPONSORSHIP TO 2077 01:17:27,720 --> 01:17:27,960 ADVANCE. 2078 01:17:27,960 --> 01:17:31,640 AND IF WE WANT TO DIVERSIFY OUR 2079 01:17:31,640 --> 01:17:35,520 TRAINEES, SO THAT THEY CAN 2080 01:17:35,520 --> 01:17:36,400 BECOME THAT EARLY-STAGE 2081 01:17:36,400 --> 01:17:37,480 INVESTIGATOR, THE NEW 2082 01:17:37,480 --> 01:17:38,640 INVESTIGATOR, THAT PIPELINE, WE 2083 01:17:38,640 --> 01:17:43,160 NEED ACTIVE MENTORS AND SPONSORS 2084 01:17:43,160 --> 01:17:44,320 FROM THE BEGINNING. 2085 01:17:44,320 --> 01:17:46,720 AND REALLY GIVING THEM CENTER 2086 01:17:46,720 --> 01:17:47,240 STAGE. 2087 01:17:47,240 --> 01:17:48,600 SO I REALLY APPRECIATE. 2088 01:17:48,600 --> 01:17:51,160 AND YOU ARE ONE OF THE AS YOU 2089 01:17:51,160 --> 01:17:53,360 SAID -- IT DOESN'T REALLY HAVE 2090 01:17:53,360 --> 01:17:54,160 TO DO WITH LUCK. 2091 01:17:54,160 --> 01:17:56,520 IT'S WHAT YOU ARE DOING FOR THE 2092 01:17:56,520 --> 01:18:00,640 LAST 15 YEARS THAT YOU WERE 2093 01:18:00,640 --> 01:18:06,080 COMPETITIVE FOR THAT COSWD-DEIA 2094 01:18:06,080 --> 01:18:08,000 MENTORSHIP SUPCOMMENT ARE ONE OF 2095 01:18:08,000 --> 01:18:10,760 THE FIRST RECIPIENTS AND 2096 01:18:10,760 --> 01:18:14,520 FORTUNATE THAT INCLUDE COULD 2097 01:18:14,520 --> 01:18:18,480 FIND YOUR SUPPLEMENT. 2098 01:18:18,480 --> 01:18:18,880 >> THANK YOU. 2099 01:18:18,880 --> 01:18:21,440 I GUESS WE DON'T HAVE A LOT OF 2100 01:18:21,440 --> 01:18:23,720 TIME BUT JUST WANT TO DO A FINAL 2101 01:18:23,720 --> 01:18:24,920 CHECK TO SEE WHETHER OR NOT 2102 01:18:24,920 --> 01:18:32,240 THERE ARE ADDITIONAL QUESTIONS? 2103 01:18:32,240 --> 01:18:32,440 OKAY. 2104 01:18:32,440 --> 01:18:34,120 I THINK WE ARE GOOD TO HAVE OUR 2105 01:18:34,120 --> 01:18:34,600 BREAK. 2106 01:18:34,600 --> 01:18:36,240 >> YES, SO WE WILL TAKE A 2107 01:18:36,240 --> 01:18:42,120 10-MINUTE BREAK AND COME BACK AT 2108 01:18:42,120 --> 01:18:46,280 1:30 EASTERN TIME P.M. FOR OUR 2109 01:18:46,280 --> 01:18:49,160 SESSION 5. 2110 01:18:49,160 --> 01:18:51,960 THANK YOU. 2111 01:18:51,960 --> 01:18:53,880 >>WELCOME BACK 2112 01:18:53,880 --> 01:18:55,440 EVERYONE FOR SESSION 5. 2113 01:18:55,440 --> 01:18:59,480 LET ME QUICKLY INTRODUCE THIS 2114 01:18:59,480 --> 01:18:59,720 SESSION. 2115 01:18:59,720 --> 01:19:01,320 WE ARE GOING TO LAUNCH FROM 2116 01:19:01,320 --> 01:19:02,960 OTHER PROGRAMS ON ENHANCING 2117 01:19:02,960 --> 01:19:04,040 PARTICIPANT DIVERSITY IN 2118 01:19:04,040 --> 01:19:04,880 CLINICAL RESEARCH. 2119 01:19:04,880 --> 01:19:07,000 THE FIRST PROGRAM THAT WE WILL 2120 01:19:07,000 --> 01:19:11,000 HEAR FROM IS FROM THE 2121 01:19:11,000 --> 01:19:11,520 RECRUITMENT TEAM OF THE 2122 01:19:11,520 --> 01:19:15,160 ALZHEIMER'S DISEASE BIOMARKER 2123 01:19:15,160 --> 01:19:18,400 CONSORTIUM DOWN SYNDROME, ABC 2124 01:19:18,400 --> 01:19:18,560 DS. 2125 01:19:18,560 --> 01:19:22,400 DR. ANNIE COHEN HAD TO EXCUSE 2126 01:19:22,400 --> 01:19:23,080 HERSELF FOR A FAMILY EMERGENCY 2127 01:19:23,080 --> 01:19:29,920 SO I WILL BE INTRODUCING INST 2128 01:19:29,920 --> 01:19:30,960 INSTEAD. 2129 01:19:30,960 --> 01:19:31,600 DR. HARTLEY IS THE DISTINGUISHED 2130 01:19:31,600 --> 01:19:35,560 CHAIR OF HUMAN ECOLOGY AND 2131 01:19:35,560 --> 01:19:36,040 PROFESSOR IN THE HUMAN 2132 01:19:36,040 --> 01:19:37,840 DEVELOPMENT AND FAMILY STUDIES 2133 01:19:37,840 --> 01:19:42,400 DEPARTMENT AT THE UNIVERSITY OF 2134 01:19:42,400 --> 01:19:42,800 WISCONSIN-MADISON. 2135 01:19:42,800 --> 01:19:45,360 NEXT WILL BE DR. CAREY GLEASON, 2136 01:19:45,360 --> 01:19:46,520 A FACULTY MEMBER AT THE DIVISION 2137 01:19:46,520 --> 01:19:51,880 OF GERIATRICS AND GERONTOLOGY AT 2138 01:19:51,880 --> 01:19:52,440 THE DEPARTMENT OF MEDICINE. 2139 01:19:52,440 --> 01:19:56,760 AND LEADS THE INCLUSION OF 2140 01:19:56,760 --> 01:19:57,640 UNDERREPRESENTED GROUPS CORE AT 2141 01:19:57,640 --> 01:20:00,400 THE WISCONSIN ALZHEIMER'S 2142 01:20:00,400 --> 01:20:06,680 DISEASE RESEARCH CENTER. 2143 01:20:06,680 --> 01:20:07,320 WE WILL BE JOINED BY NICOLE 2144 01:20:07,320 --> 01:20:09,320 SHIREE WHITMOYER, THE PROJECT 2145 01:20:09,320 --> 01:20:12,400 MANAGER FOR DR. HARTLEY'S LAB AT 2146 01:20:12,400 --> 01:20:13,040 THE UNIVERSITY OF 2147 01:20:13,040 --> 01:20:14,360 WISCONSIN-MADISON AND ALSO THE 2148 01:20:14,360 --> 01:20:17,920 STUDY COORDINATOR FOR ABC DS. 2149 01:20:17,920 --> 01:20:20,680 SHE SERVICE AS THE PRIMARY 2150 01:20:20,680 --> 01:20:22,280 LIAISON BETWEEN COMMUNITY 2151 01:20:22,280 --> 01:20:23,720 PARTNERS AND THE WISCONSIN SITE 2152 01:20:23,720 --> 01:20:27,160 OF THE ABC DS STUDY. 2153 01:20:27,160 --> 01:20:30,440 NEXT WE WILL BE JOINED IN THE 2154 01:20:30,440 --> 01:20:33,080 SAME TEAM, DR. MARIA NOGUERON 2155 01:20:33,080 --> 01:20:36,120 WHO IS THE COMMUNITY OUTREACH 2156 01:20:36,120 --> 01:20:37,840 SPECIALIST AT THE CENTER. 2157 01:20:37,840 --> 01:20:40,280 AS A LATINA AND A MOTHER TO A 2158 01:20:40,280 --> 01:20:42,400 DAUGHTER WITH DOWN SYNDROME, SHE 2159 01:20:42,400 --> 01:20:45,360 HAS DIRECT EXPERIENCE WITH 2160 01:20:45,360 --> 01:20:48,320 UNDERREPRESENTATION OF HER 2161 01:20:48,320 --> 01:20:49,520 COMMUNITY IN RESEARCH PROGRAMS 2162 01:20:49,520 --> 01:20:52,640 AS RESEARCHERS OR COMMUNITY 2163 01:20:52,640 --> 01:20:53,000 PARTICIPANTS. 2164 01:20:53,000 --> 01:20:55,160 LAST BUT NOT LEAST, WE WILL BE 2165 01:20:55,160 --> 01:20:57,320 JOINED BY SELF-ADVOCATE, 2166 01:20:57,320 --> 01:20:59,800 Mr. DANNY CHAFETZ WHO IS A 2167 01:20:59,800 --> 01:21:01,320 23-YEAR-OLD PERSON WITH DOWN 2168 01:21:01,320 --> 01:21:04,320 SYNDROME AND A COMMUNITY 2169 01:21:04,320 --> 01:21:04,760 OUTREACH SPECIALIST. 2170 01:21:04,760 --> 01:21:08,680 HE WILL BE JOINED BY HIS MOTHER, 2171 01:21:08,680 --> 01:21:14,520 WHO WILL BE CHEERING HIM ON. 2172 01:21:14,520 --> 01:21:24,680 THANK YOU. 2173 01:21:25,200 --> 01:21:26,160 >> HELLO, EVERYONE AND GOOD 2174 01:21:26,160 --> 01:21:26,400 AFTERNOON. 2175 01:21:26,400 --> 01:21:27,320 IF YOU ARE ON THE EAST COAST OR 2176 01:21:27,320 --> 01:21:32,000 GOOD MORNING IF YOU'RE ON THE 2177 01:21:32,000 --> 01:21:32,280 WEST COAST. 2178 01:21:32,280 --> 01:21:34,880 I WANT TO THANK THE CONFERENCE 2179 01:21:34,880 --> 01:21:36,280 ORGANIZERS FOR THE INVITATION TO 2180 01:21:36,280 --> 01:21:36,800 BE HERE TODAY. 2181 01:21:36,800 --> 01:21:40,120 SO I'M CAREY GLEASON, FROM THE 2182 01:21:40,120 --> 01:21:40,840 UNIVERSITY OF WISCONSIN, PART OF 2183 01:21:40,840 --> 01:21:42,880 THE ALZHEIMER'S DISEASE RESEARCH 2184 01:21:42,880 --> 01:21:44,600 CENTER AND I'M EXCITED TO BE 2185 01:21:44,600 --> 01:21:48,520 PART OF THE ADORE TEAM WITH THE 2186 01:21:48,520 --> 01:21:50,600 ABC DS PROJECT. 2187 01:21:50,600 --> 01:21:54,400 SO, NEXT SLIDE, PLEASE. 2188 01:21:54,400 --> 01:21:58,000 SO THIS PROVIDES AN OUTLINE OF 2189 01:21:58,000 --> 01:21:59,360 30 MINUTES WITH YOU THIS 2190 01:21:59,360 --> 01:22:00,280 AFTERNOON. 2191 01:22:00,280 --> 01:22:01,720 THE FIRST PART I'LL SPEND ABOUT 2192 01:22:01,720 --> 01:22:05,360 10 MINUTES TALKING ABOUT SOME OF 2193 01:22:05,360 --> 01:22:09,360 THE BARRIERS TO RECRUITMENT AND 2194 01:22:09,360 --> 01:22:10,160 INCLUSIVE RESEARCH, AND PROVIDE 2195 01:22:10,160 --> 01:22:12,880 A THEORY FOR HOW TO ADDRESS 2196 01:22:12,880 --> 01:22:16,320 THOSE BARRIERS WITH A MODEL OF 2197 01:22:16,320 --> 01:22:16,880 ENGAGEMENT AND INVESTMENT. 2198 01:22:16,880 --> 01:22:18,440 THEN I'LL TURN THINGS OVER TO MY 2199 01:22:18,440 --> 01:22:19,360 COLLEAGUE WHO WILL BE TALKING 2200 01:22:19,360 --> 01:22:23,800 ABOUT THE IMPLEMENTATION OF THIS 2201 01:22:23,800 --> 01:22:24,440 THEORY WITH THE ADORE CORE, AND 2202 01:22:24,440 --> 01:22:25,360 THEN FINALLY WE'RE GOING TO 2203 01:22:25,360 --> 01:22:27,520 LEARN HOW THIS IS GOING IN THE 2204 01:22:27,520 --> 01:22:29,280 COMMUNITY SETTINGS FROM OUR 2205 01:22:29,280 --> 01:22:33,240 PARTNERS IN THE COMMUNITY 2206 01:22:33,240 --> 01:22:34,720 DR. MARIA AND Mr. CHAVEZ. 2207 01:22:34,720 --> 01:22:37,360 SO LET ME GO AHEAD AND GO TO THE 2208 01:22:37,360 --> 01:22:41,600 NEXT SLIDE, PLEASE. 2209 01:22:41,600 --> 01:22:43,840 I'D LIKE TO START WITH OUR 2210 01:22:43,840 --> 01:22:44,480 TAKE-HOME MESSAGE. 2211 01:22:44,480 --> 01:22:46,200 SO IF YOU HEAR NOTHING ELSE FROM 2212 01:22:46,200 --> 01:22:47,960 MY TIME WITH YOU, I HOPE THAT 2213 01:22:47,960 --> 01:22:50,520 YOU TAKE AWAY THESE TWO KEY 2214 01:22:50,520 --> 01:22:51,360 MESSAGES. 2215 01:22:51,360 --> 01:22:53,360 THAT WHAT WE REALLY NEED TO DO 2216 01:22:53,360 --> 01:22:55,680 IN ORDER TO SUCCEED AT INCLUSIVE 2217 01:22:55,680 --> 01:22:57,640 RESEARCH AND WE NEED TO REDEFINE 2218 01:22:57,640 --> 01:23:00,160 RECRUITMENT AS ENGAGEMENT. 2219 01:23:00,160 --> 01:23:00,960 ENGAGEMENT IS THE BEGINNING, THE 2220 01:23:00,960 --> 01:23:03,920 MIDDLE AND THE END OF THIS WORK. 2221 01:23:03,920 --> 01:23:07,400 SO INSTEAD OF THINKING ABOUT 2222 01:23:07,400 --> 01:23:09,440 SIMPLY A UNIT DIRECT -- 2223 01:23:09,440 --> 01:23:10,120 UNIDIRECTIONAL RELATIONSHIP WITH 2224 01:23:10,120 --> 01:23:12,160 COMMUNITY, WE THINK ABOUT 2225 01:23:12,160 --> 01:23:12,440 ENGAGEMENT. 2226 01:23:12,440 --> 01:23:13,480 YOU BUILD RELATIONSHIPS. 2227 01:23:13,480 --> 01:23:17,160 YOU INVEST TIME AND ENERGY. 2228 01:23:17,160 --> 01:23:18,240 AND THIS LOOKS DIFFERENT THAN 2229 01:23:18,240 --> 01:23:23,720 MAYBE A TYPICAL TYPE OF ACADEMIC 2230 01:23:23,720 --> 01:23:23,920 SETTING. 2231 01:23:23,920 --> 01:23:24,600 AND THIS IS WHERE THE NEXT POINT 2232 01:23:24,600 --> 01:23:26,640 THAT I WANT TO MAKE IS THAT THE 2233 01:23:26,640 --> 01:23:29,800 RESEARCH WORLD IN ACADEMIA HAS A 2234 01:23:29,800 --> 01:23:30,040 CULTURE. 2235 01:23:30,040 --> 01:23:31,440 AND THAT CULTURE IS OFTENTIMES 2236 01:23:31,440 --> 01:23:33,240 NOT ALWAYS COMPATIBLE WITH 2237 01:23:33,240 --> 01:23:34,200 COMMUNITY WORK. 2238 01:23:34,200 --> 01:23:36,120 SO THIS IS A PAPER THAT I WANT 2239 01:23:36,120 --> 01:23:39,600 TO HIGHLIGHT FROM A DEAR FRIEND 2240 01:23:39,600 --> 01:23:41,360 OF MINE WHO DESCRIBED THIS 2241 01:23:41,360 --> 01:23:43,480 PHENOMENON WITHIN THE CONTEXT OF 2242 01:23:43,480 --> 01:23:45,360 IRBs AND TALKING ABOUT THIS 2243 01:23:45,360 --> 01:23:51,480 FROM THE HIDDEN HE GEMNY OF THIS 2244 01:23:51,480 --> 01:23:52,640 IDEA THAT THE WAY OF DOING 2245 01:23:52,640 --> 01:23:54,400 THINGS IN ACADEMIA IS THE BEST 2246 01:23:54,400 --> 01:23:57,120 WAY AND THE ONLY WAY. 2247 01:23:57,120 --> 01:24:00,480 WHEN IN FACT, IT DOESN'T ALWAYS 2248 01:24:00,480 --> 01:24:02,760 WORK WELL WITH COMMUNITY 2249 01:24:02,760 --> 01:24:03,080 ENGAGEMENT. 2250 01:24:03,080 --> 01:24:05,000 SO I KNOW DR. MARIA WILL POINT 2251 01:24:05,000 --> 01:24:06,040 OUT ONE OF THOSE WAYZ IS 2252 01:24:06,040 --> 01:24:07,880 SOMETIMES WE COME IN WITH OUR 2253 01:24:07,880 --> 01:24:10,000 TIMELINE AND IN REALITY, 2254 01:24:10,000 --> 01:24:12,480 COMMUNITY WORK HAS A DIFFERENT 2255 01:24:12,480 --> 01:24:12,760 TIMELINE. 2256 01:24:12,760 --> 01:24:15,200 THAT'S JUST ONE OF MANY TYPES OF 2257 01:24:15,200 --> 01:24:17,160 CULTURE CLASH THAT IS YOU'LL 2258 01:24:17,160 --> 01:24:17,440 EXPERIENCE. 2259 01:24:17,440 --> 01:24:18,520 AND ONCE WE RECOGNIZE THAT WE 2260 01:24:18,520 --> 01:24:21,440 HAVE A CULTURE, WE CAN RECOGNIZE 2261 01:24:21,440 --> 01:24:22,680 THAT WE DON'T HAVE TO ALWAYS 2262 01:24:22,680 --> 01:24:26,320 APPROACH THINGS WITH OUR 2263 01:24:26,320 --> 01:24:26,880 CULTURAL LENSE. 2264 01:24:26,880 --> 01:24:29,120 SO THOSE ARE MY TWO TAKE-HOME 2265 01:24:29,120 --> 01:24:29,400 MESSAGES. 2266 01:24:29,400 --> 01:24:34,880 NEXT SLIDE, PLEASE. 2267 01:24:34,880 --> 01:24:37,360 I WANT TO JUST TAKE ONE BRIEF 2268 01:24:37,360 --> 01:24:39,400 MOMENT TO TALK ABOUT WORDS. 2269 01:24:39,400 --> 01:24:41,520 AND THE WORDS I'LL BE USING AND 2270 01:24:41,520 --> 01:24:42,680 PUT THAT INTO CONTEXT. 2271 01:24:42,680 --> 01:24:45,600 SO I AVOID THE WORD, MINORITY 2272 01:24:45,600 --> 01:24:49,360 AND INSTEAD USE, OFTENTIMES, MY 2273 01:24:49,360 --> 01:24:54,160 NOR TIESED OR RACIALIZED, TO 2274 01:24:54,160 --> 01:24:56,680 RECOGNIZE THIS IS A STATUS 2275 01:24:56,680 --> 01:24:57,320 IMPOSED ON OTHER PEOPLE BASED ON 2276 01:24:57,320 --> 01:24:58,880 HOW THEY LOOK OR THEIR 2277 01:24:58,880 --> 01:25:02,360 APPEARANCES OR WHERE THEY LIVE, 2278 01:25:02,360 --> 01:25:02,800 PERHAPS. 2279 01:25:02,800 --> 01:25:04,280 AND THAT THIS IS LESS OF A 2280 01:25:04,280 --> 01:25:05,760 BIOLOGICAL CHARACTERISTIC THAN 2281 01:25:05,760 --> 01:25:09,040 IT IS A SOCIAL CHARACTERISTIC. 2282 01:25:09,040 --> 01:25:12,560 IN MUCH OF MY WORK, I FOCUS ON 2283 01:25:12,560 --> 01:25:14,800 GROUPS, RACIAL AND ETHNIC GROUPS 2284 01:25:14,800 --> 01:25:16,800 WHO HAVE BEEN MARGINALIZED IN 2285 01:25:16,800 --> 01:25:19,680 PARTICULAR BLACK 2286 01:25:19,680 --> 01:25:21,200 AFRICAN-AMERICAN, INDIGENOUS, 2287 01:25:21,200 --> 01:25:27,200 LATINO, AND I USE THE WORD, BIPO 2288 01:25:27,200 --> 01:25:27,360 DO. 2289 01:25:27,360 --> 01:25:27,920 DESCRIBE THOSE COMMUNITIES. 2290 01:25:27,920 --> 01:25:30,080 IT'S A TERM TA CAPTURED THE IDEA 2291 01:25:30,080 --> 01:25:33,520 THAT THESE ARE STATUS THAT ARE 2292 01:25:33,520 --> 01:25:35,800 IMPOSED ON OTHER PEOPLE BY 2293 01:25:35,800 --> 01:25:38,320 OFTENTIMES A DOMINANT CULTURE. 2294 01:25:38,320 --> 01:25:39,960 THERE ARE OTHER GROUPS WHO ARE 2295 01:25:39,960 --> 01:25:41,520 UNDERREPRESENTED AS WELL, NOT 2296 01:25:41,520 --> 01:25:44,040 JUST RACIAL AND ETHNIC GROUPS. 2297 01:25:44,040 --> 01:25:45,360 THERE ARE SEXUAL ORIENTATION, 2298 01:25:45,360 --> 01:25:46,600 GENDER IDENTITY GROUPS THAT ARE 2299 01:25:46,600 --> 01:25:47,880 UNDERREPRESENTED IN RESEARCH. 2300 01:25:47,880 --> 01:25:51,800 GROUPS WHO ARE INDIVIDUALS FROM 2301 01:25:51,800 --> 01:25:52,280 LOWER ECONOMIC STRATA. 2302 01:25:52,280 --> 01:25:53,920 AND ALSO RURAL POPULATIONS ARE 2303 01:25:53,920 --> 01:25:57,040 OFTENTIMES EXCLUDED FROM OUR 2304 01:25:57,040 --> 01:25:58,120 RESEARCH ENGAGEMENT EFFORTS. 2305 01:25:58,120 --> 01:26:04,160 NEXT SLIDE, PLEASE. 2306 01:26:04,160 --> 01:26:05,400 SO, LET'S TAKE STOCK AND LOOK AT 2307 01:26:05,400 --> 01:26:09,280 HOW WE HAVE DONE IN THE FIELD. 2308 01:26:09,280 --> 01:26:11,760 AS THE FIELD IN ALZHEIMER'S 2309 01:26:11,760 --> 01:26:12,920 DISEASE TREATMENTS OR THERAPIES 2310 01:26:12,920 --> 01:26:14,520 MOVES FORWARD, IN THE LAST YEAR 2311 01:26:14,520 --> 01:26:16,360 THERE WAS APPROVAL OF THE 2312 01:26:16,360 --> 01:26:17,840 FIRST-EVER DISEASE-MODIFYING 2313 01:26:17,840 --> 01:26:18,040 DRUG. 2314 01:26:18,040 --> 01:26:21,360 MUCH OF WHAT WE HAD OFFERED FOR 2315 01:26:21,360 --> 01:26:23,320 TREATMENT WAS RELATED TO 2316 01:26:23,320 --> 01:26:24,560 TREATMENT OF SYMPTOMS AND AGAIN, 2317 01:26:24,560 --> 01:26:25,600 NOW THE FIELD IS REALLY SHIFTED 2318 01:26:25,600 --> 01:26:29,240 TO THIS IDEA OF 2319 01:26:29,240 --> 01:26:31,640 DISEASE-MODIFYING. 2320 01:26:31,640 --> 01:26:32,360 REALLY IMPORTANT DEVELOPMENT. 2321 01:26:32,360 --> 01:26:33,880 ONE THAT COULD BE A GAME 2322 01:26:33,880 --> 01:26:34,360 CHANGER. 2323 01:26:34,360 --> 01:26:36,240 LOOK AT HOW WE DID IN TERMS OF 2324 01:26:36,240 --> 01:26:36,560 OUR INCLUSION. 2325 01:26:36,560 --> 01:26:39,480 THESE WERE THE TWO STUDIES THAT 2326 01:26:39,480 --> 01:26:41,280 LED TO THE APPROVAL OF THIS. 2327 01:26:41,280 --> 01:26:48,520 99 INDIVIDUALS OF THE 3,285 2328 01:26:48,520 --> 01:26:51,560 INDIVIDUALS IDENTIFIED AS HIS 2329 01:26:51,560 --> 01:26:56,200 SPAN -- 19 IDENTIFIED AS BLACK. 2330 01:26:56,200 --> 01:26:57,880 ONE AMERICAN INDIAN ALASKA 2331 01:26:57,880 --> 01:27:00,600 NATIVE INDIVIDUAL AND ONE NATIVE 2332 01:27:00,600 --> 01:27:02,200 AWHYIAN PACIFIC ISLANDER. 2333 01:27:02,200 --> 01:27:04,280 IN TERMS OF RACIAL DIVERSITY, IT 2334 01:27:04,280 --> 01:27:07,520 WAS AGAIN, WE WERE NOT 2335 01:27:07,520 --> 01:27:09,040 ACCOMPLISHING DIVERSE OR 2336 01:27:09,040 --> 01:27:09,480 INCLUSIVE RESEARCH. 2337 01:27:09,480 --> 01:27:13,640 NEXT SLIDE, PLEASE. 2338 01:27:13,640 --> 01:27:16,240 SO YOU MAY SAY, WHY WE 2339 01:27:16,240 --> 01:27:18,320 OFTENTIMES, SAY WHY DO THEY NOT 2340 01:27:18,320 --> 01:27:18,560 ENROLL? 2341 01:27:18,560 --> 01:27:21,560 LIKE PUTTING THIS BACK ON TO 2342 01:27:21,560 --> 01:27:22,200 MARGINALIZED COMMUNITIES. 2343 01:27:22,200 --> 01:27:24,600 AND I WOULD SAY, ACTUALLY THAT'S 2344 01:27:24,600 --> 01:27:25,280 NOT THE ISSUE. 2345 01:27:25,280 --> 01:27:27,760 THAT IF WE LOOK AT WHEN WE DON'T 2346 01:27:27,760 --> 01:27:29,480 OR DO RESEARCH THAT DOESN'T 2347 01:27:29,480 --> 01:27:32,160 REQUIRE INFORMED CONSENT, 2348 01:27:32,160 --> 01:27:33,480 AFRICAN-AMERICANS WERE 2349 01:27:33,480 --> 01:27:34,120 DISPROPORTIONATELY ENROLLED IN 2350 01:27:34,120 --> 01:27:37,000 THOSE STUDIES. 2351 01:27:37,000 --> 01:27:38,920 THIS IS ONE EXAMPLE OF AN 2352 01:27:38,920 --> 01:27:39,600 EXEMPT -- INFORMED CONCEPT 2353 01:27:39,600 --> 01:27:42,640 EXEMPT STUDY AND IT CERTAINLY IS 2354 01:27:42,640 --> 01:27:45,320 NOT THAT AFRICAN-AMERICANS ARE 2355 01:27:45,320 --> 01:27:47,840 NOT WILLING OR -- EXCUSE ME, NOT 2356 01:27:47,840 --> 01:27:49,280 OPEN OR NOT AVAILABLE TO 2357 01:27:49,280 --> 01:27:50,520 PARTICIPATE, IT'S JUST SIMPLY WE 2358 01:27:50,520 --> 01:27:54,320 HAVE NOT DONE THE WORK OF 2359 01:27:54,320 --> 01:27:56,120 ENGAGING SO THAT INDIVIDUALS 2360 01:27:56,120 --> 01:27:57,360 WILL FREELY VOLUNTEER TO JOIN 2361 01:27:57,360 --> 01:27:59,920 AND ARE INCLUDED FULLY IN THAT 2362 01:27:59,920 --> 01:28:00,160 RESEARCH. 2363 01:28:00,160 --> 01:28:02,600 NEXT SLIDE, PLEASE. 2364 01:28:02,600 --> 01:28:05,720 SO WHY IS THAT? 2365 01:28:05,720 --> 01:28:08,040 WHY ARE WE OVER ENROLLING IN 2366 01:28:08,040 --> 01:28:12,640 CASES WHERE THERE IS NOT A 2367 01:28:12,640 --> 01:28:14,200 CONSENT PROCESS INVOLVED AND 2368 01:28:14,200 --> 01:28:16,360 UNDER ENROLLING WHEN WE HAVE TO 2369 01:28:16,360 --> 01:28:18,200 GET INFORMED CONSENT? 2370 01:28:18,200 --> 01:28:21,360 MANY PEOPLE HAVE HEARD ABOUT THE 2371 01:28:21,360 --> 01:28:23,920 TUSKEGEE SYPHILIS STUDY. 2372 01:28:23,920 --> 01:28:29,080 THERE IS A DEGREE OF MISTRUST 2373 01:28:29,080 --> 01:28:30,600 BECAUSE OF OUR BAD BEHAVIOR AS 2374 01:28:30,600 --> 01:28:30,920 RESEARCHERS. 2375 01:28:30,920 --> 01:28:34,560 THERE IS A CULTURE OF MISTRUST. 2376 01:28:34,560 --> 01:28:35,800 AND WE'D LIKE TO THINK THAT THIS 2377 01:28:35,800 --> 01:28:37,560 IS SIMPLY SOMETHING THAT IS IN 2378 01:28:37,560 --> 01:28:40,200 THE PAST. 2379 01:28:40,200 --> 01:28:40,880 NEXT SLIDE, PLEASE. 2380 01:28:40,880 --> 01:28:42,280 HOWEVER, THERE ARE 2381 01:28:42,280 --> 01:28:44,400 UNFORTUNATELY, PLENTY OF 2382 01:28:44,400 --> 01:28:48,400 EXAMPLES OF MORE RECENT MISDEEDS 2383 01:28:48,400 --> 01:28:51,040 IN RESEARCH OR JUST NEIGHBOR 2384 01:28:51,040 --> 01:28:53,680 IT'S NOT ABOUT AN INTENTIONAL, 2385 01:28:53,680 --> 01:28:57,320 IT'S AN OVERSIGHT AND AGAIN THAT 2386 01:28:57,320 --> 01:28:58,960 HE GEMNY OF THE ACADEMIC LENSE 2387 01:28:58,960 --> 01:29:01,120 AND THAT THAT WE DON'T LOOK AT 2388 01:29:01,120 --> 01:29:02,480 THINGS FROM THE PERSPECTIVE OF 2389 01:29:02,480 --> 01:29:04,720 COMMUNITY MEMBERS. 2390 01:29:04,720 --> 01:29:06,560 THESE ARE JUST TWO EXAMPLES OF 2391 01:29:06,560 --> 01:29:07,840 RECENT EVENTS THAT ENCOURAGE 2392 01:29:07,840 --> 01:29:11,400 PEOPLE TO READ ABOUT SO YOU KNOW 2393 01:29:11,400 --> 01:29:16,640 ABOUT THESE INCIDENCES. 2394 01:29:16,640 --> 01:29:21,040 SO THE BARRIERS TO ACCESSING 2395 01:29:21,040 --> 01:29:21,640 CLINICAL RESEARCH, MANY PEOPLE 2396 01:29:21,640 --> 01:29:24,560 CAN TALK ABOUT THE 2397 01:29:24,560 --> 01:29:25,440 TRANSPORTATION ISSUES, OR 2398 01:29:25,440 --> 01:29:26,080 SCARCITY ISSUE. 2399 01:29:26,080 --> 01:29:28,080 I WANT US TO FOCUS, TO MAKE A 2400 01:29:28,080 --> 01:29:30,520 BIG DIFFERENCE IN ADDRESSING 2401 01:29:30,520 --> 01:29:31,720 CULTURAL SAFETY OF RESEARCH. 2402 01:29:31,720 --> 01:29:35,880 AND HOW DO WE GO ABOUT DOING 2403 01:29:35,880 --> 01:29:36,080 THAT? 2404 01:29:36,080 --> 01:29:37,160 NEXT SLIDE, PLEASE. 2405 01:29:37,160 --> 01:29:38,520 THERE ARE MANY -- I THINK A BIG 2406 01:29:38,520 --> 01:29:41,440 PART OF THIS IS FIRST 2407 01:29:41,440 --> 01:29:43,560 ACKNOWLEDGING THAT MISTRUST AND 2408 01:29:43,560 --> 01:29:47,360 ACCESS ARE LIMITATIONS AND -- 2409 01:29:47,360 --> 01:29:47,800 ADVANCE, PLEASE. 2410 01:29:47,800 --> 01:29:49,960 AND THAT WHAT WE DO AS 2411 01:29:49,960 --> 01:29:51,800 RESEARCHERS IS ACKNOWLEDGE OUR 2412 01:29:51,800 --> 01:29:55,480 RESEARCH CULTURE AND REALLY TRY 2413 01:29:55,480 --> 01:29:56,200 TO ADAPT OUR RESEARCH CULTURE SO 2414 01:29:56,200 --> 01:29:59,320 THAT WE DON'T PUT OUR NEEDS AT 2415 01:29:59,320 --> 01:30:02,040 THE CENTER OF THE PROJECT BUT 2416 01:30:02,040 --> 01:30:05,560 MOVE IT TO -- MOVE THE CENTER TO 2417 01:30:05,560 --> 01:30:08,520 BE PARTICIPANT'S EXPERIENCES. 2418 01:30:08,520 --> 01:30:09,560 NEXT SLIDE, PLEASE. 2419 01:30:09,560 --> 01:30:12,560 SO THERE IS SO MANY MODELS OF 2420 01:30:12,560 --> 01:30:12,960 RESEARCH ENGAGEMENT. 2421 01:30:12,960 --> 01:30:16,960 THESE ARE JUST A FEW. 2422 01:30:16,960 --> 01:30:17,560 I DON'T WANT TO -- MANY PEOPLE 2423 01:30:17,560 --> 01:30:18,320 ARE DOING THIS AND DOING IT 2424 01:30:18,320 --> 01:30:18,520 WELL. 2425 01:30:18,520 --> 01:30:21,680 SO I JUST WANT TO ACKNOWLEDGE 2426 01:30:21,680 --> 01:30:23,640 THE MANY COLLEAGUES THAT ARE 2427 01:30:23,640 --> 01:30:27,280 DOING THIS WORK IN A REALLY -- 2428 01:30:27,280 --> 01:30:29,080 DESERVE RESPECT IN WHAT THEY ARE 2429 01:30:29,080 --> 01:30:30,560 DOING FOR COMMUNITY ENGAGED 2430 01:30:30,560 --> 01:30:30,840 RESEARCH. 2431 01:30:30,840 --> 01:30:34,960 NEXT SLIDE, PLEASE. 2432 01:30:34,960 --> 01:30:36,680 SO A MODEL THAT WE'RE USING AT 2433 01:30:36,680 --> 01:30:38,480 OUR CENTER AND ALSO ONE THAT I 2434 01:30:38,480 --> 01:30:40,400 HAVE TALKED ABOUT WITH THE ADORE 2435 01:30:40,400 --> 01:30:41,880 CORE AND THEY HAVE ADAPTED IT, 2436 01:30:41,880 --> 01:30:45,160 IS WHAT WE DO IS WE ENGAGE WITH 2437 01:30:45,160 --> 01:30:47,760 COMMUNITY AND WE DO SO IN STEPS 2438 01:30:47,760 --> 01:30:50,200 AND WE FOLLOW THE LEAD OF THE 2439 01:30:50,200 --> 01:30:51,760 COMMUNITY FOR THE LARGE PART. 2440 01:30:51,760 --> 01:30:53,360 SO WE RESPOND FIRST TO THE 2441 01:30:53,360 --> 01:30:55,880 COMMUNITY NEEDS AND IT MAY OR 2442 01:30:55,880 --> 01:30:58,480 MAY NOT BE DIRECTLY RELATED TO 2443 01:30:58,480 --> 01:30:59,800 WHAT YOUR GOALS ARE FOR 2444 01:30:59,800 --> 01:31:00,080 RECRUITMENT. 2445 01:31:00,080 --> 01:31:01,800 YOU MIGHT WANT TO TALK ABOUT 2446 01:31:01,800 --> 01:31:03,720 DOWN SYNDROME AND COMMUNITY 2447 01:31:03,720 --> 01:31:04,880 ADVOCATES MAY ACTUALLY WANT TO 2448 01:31:04,880 --> 01:31:07,080 TALK ABOUT I THINK SO THIS LIKE 2449 01:31:07,080 --> 01:31:07,560 MANAGING BLOOD PRESSURE. 2450 01:31:07,560 --> 01:31:11,280 OR CAREGIVER RESOURCES OR FAMILY 2451 01:31:11,280 --> 01:31:11,920 RESOURCES. 2452 01:31:11,920 --> 01:31:13,120 RESPOND TO THAT AND THAT'S WHAT 2453 01:31:13,120 --> 01:31:14,960 I REALLY ENCOURAGE YOU TO DO. 2454 01:31:14,960 --> 01:31:17,400 DON'T JUST SAY THIS IS NOT IN MY 2455 01:31:17,400 --> 01:31:18,480 WHEEL HOUSE. 2456 01:31:18,480 --> 01:31:20,160 YOU SAY I WILL CALL IN 2457 01:31:20,160 --> 01:31:20,800 COLLEAGUES WHO KNOW ABOUT THIS. 2458 01:31:20,800 --> 01:31:23,840 YOU BUILD ADVOCACY. 2459 01:31:23,840 --> 01:31:27,720 SO I'M SURE THAT DR. MARIA -- 2460 01:31:27,720 --> 01:31:28,720 >> DR. GLEASON, WE JUST GOT A 2461 01:31:28,720 --> 01:31:30,080 NOTE FROM THE INTERPRETER TO GO 2462 01:31:30,080 --> 01:31:32,840 A LITTLE BIT SLOWER. 2463 01:31:32,840 --> 01:31:34,680 SORRY FOR THE INTERRUPTION. 2464 01:31:34,680 --> 01:31:35,000 >> SORRY. 2465 01:31:35,000 --> 01:31:38,120 SO TO BUILD COMMUNITY ADVOCATES, 2466 01:31:38,120 --> 01:31:40,280 PEOPLE IN THE COMMUNITY WHO CARE 2467 01:31:40,280 --> 01:31:42,600 ABOUT THIS WORK IN A MEANINGFUL 2468 01:31:42,600 --> 01:31:45,360 WAY, ARE YOUR BEST ADVOCATES TO 2469 01:31:45,360 --> 01:31:47,360 ADVISE AND COUNCIL YOU TO DO THE 2470 01:31:47,360 --> 01:31:48,480 BEST POSSIBLE WORK. 2471 01:31:48,480 --> 01:31:50,440 I REALLY ENCOURAGE PEOPLE TO 2472 01:31:50,440 --> 01:31:53,920 THINK ABOUT HIRING FROM THE 2473 01:31:53,920 --> 01:31:55,360 COMMUNITY. 2474 01:31:55,360 --> 01:31:57,960 WE, AS RESEARCHERS OFTENTIMES, 2475 01:31:57,960 --> 01:32:01,360 WE HAVE AGAIN AN APPROACH THAT 2476 01:32:01,360 --> 01:32:03,200 WE HAVE THAT HAS WORKED IN THE 2477 01:32:03,200 --> 01:32:04,600 PAST BUT LET ME TELL YOU, WHAT 2478 01:32:04,600 --> 01:32:07,160 WE HAVE DONE IN THE PAST HAS NOT 2479 01:32:07,160 --> 01:32:10,440 WORKED FOR FULLY-INCLUSIVE 2480 01:32:10,440 --> 01:32:10,680 RESEARCH. 2481 01:32:10,680 --> 01:32:11,360 AND THEN, FINALLY, YOU REACH A 2482 01:32:11,360 --> 01:32:14,120 PHASE OF SORT OF RECIPROCITY 2483 01:32:14,120 --> 01:32:18,480 WHERE YOUR COMMUNITY-ENGAGED 2484 01:32:18,480 --> 01:32:21,320 PARTNERS ARE WILLING TO TRUST. 2485 01:32:21,320 --> 01:32:23,160 THEY HAVE THE TRUST IN THE 2486 01:32:23,160 --> 01:32:25,320 PROGRAM AND YOUR TEAM TO 2487 01:32:25,320 --> 01:32:26,840 ENCOURAGE PARTICIPATION FROM 2488 01:32:26,840 --> 01:32:29,840 THOSE WITH WHOM THEY WORK IN THE 2489 01:32:29,840 --> 01:32:30,120 COMMUNITY. 2490 01:32:30,120 --> 01:32:36,600 NEXT SLIDE, PLEASE. 2491 01:32:36,600 --> 01:32:40,520 SO, THIS IS JUST ONE EXAMPLE OF 2492 01:32:40,520 --> 01:32:41,360 THIS. 2493 01:32:41,360 --> 01:32:43,880 MY PROJECT AFRICAN-AMERICANS 2494 01:32:43,880 --> 01:32:45,640 FIGHTING ALZHEIMER'S DISEASE IN 2495 01:32:45,640 --> 01:32:46,240 MID LIFE. 2496 01:32:46,240 --> 01:32:48,600 THIS IS OUR BIG INVESTMENT IS 2497 01:32:48,600 --> 01:32:52,520 ENGAGEMENT AND THEN ENROLL 2498 01:32:52,520 --> 01:32:53,320 INDIVIDUALS IN TWO PARENT 2499 01:32:53,320 --> 01:32:55,120 STUDIES AND THEN AT THE BACK 2500 01:32:55,120 --> 01:32:58,160 END, WE FOCUS ON SCIENCE THAT 2501 01:32:58,160 --> 01:32:58,920 ENRICHES AND IMPROVES LIVES OF 2502 01:32:58,920 --> 01:33:02,400 THOSE TOUCHED BY ALZHEIMER 2503 01:33:02,400 --> 01:33:03,600 DISEASE I IN THE AFRICAN 2504 01:33:03,600 --> 01:33:04,800 COMMUNITY. 2505 01:33:04,800 --> 01:33:06,120 NEXT SLIDE, PLEASE. 2506 01:33:06,120 --> 01:33:07,440 SO ONE OF THE WAYS QUI THIS IS 2507 01:33:07,440 --> 01:33:09,000 WE INVEST HEAVILY IN 2508 01:33:09,000 --> 01:33:09,280 PROGRAMMING. 2509 01:33:09,280 --> 01:33:11,480 SO THIS IS OUR GET MOVING 2510 01:33:11,480 --> 01:33:12,600 EXERCISE CLASS. 2511 01:33:12,600 --> 01:33:14,320 THERE IS NO EXPECTATION OF 2512 01:33:14,320 --> 01:33:17,280 RESEARCH PARTICIPATION TO BE 2513 01:33:17,280 --> 01:33:18,120 PART OF THIS PROGRAM. 2514 01:33:18,120 --> 01:33:20,000 SOME PEOPLE PARTICIPATE. 2515 01:33:20,000 --> 01:33:21,560 SOME PEOPLE CHOOSE NOT TO. 2516 01:33:21,560 --> 01:33:23,520 IN EITHER CASE YOU ARE INVITED 2517 01:33:23,520 --> 01:33:23,920 TO EXERCISE. 2518 01:33:23,920 --> 01:33:28,800 NEXT SLIDE, PLEASE. 2519 01:33:28,800 --> 01:33:32,560 WE DO COMMUNITY MEMORY 2520 01:33:32,560 --> 01:33:33,040 SCREENINGS. 2521 01:33:33,040 --> 01:33:34,960 AND AGAIN, WE DO EDUCATION 2522 01:33:34,960 --> 01:33:37,360 EVENTS, MEMORY SCREENINGS. 2523 01:33:37,360 --> 01:33:40,400 WE RESPONDED TO THE REQUEST TO 2524 01:33:40,400 --> 01:33:42,600 THE COMMISSION ON AGING, AGAIN 2525 01:33:42,600 --> 01:33:45,160 TO GIVE FIRST. 2526 01:33:45,160 --> 01:33:47,240 NEXT SLIDE, PLEASE. 2527 01:33:47,240 --> 01:33:49,360 WE BUILD ADVOCACY. 2528 01:33:49,360 --> 01:33:51,000 THE BLACK LEADERS OF BRAIN 2529 01:33:51,000 --> 01:33:53,280 HEALTH IS ONE GROUP THAT WE 2530 01:33:53,280 --> 01:33:54,240 HAVE -- COMMUNITY LEADERS WHO 2531 01:33:54,240 --> 01:33:57,200 CARE ABOUT THIS WHO ARE INVESTED 2532 01:33:57,200 --> 01:33:58,640 WHO CAN REALLY ADVICE US AND 2533 01:33:58,640 --> 01:33:59,720 KEEP OUR FEET ON THE GROUND IN 2534 01:33:59,720 --> 01:34:01,600 TERMS OF WHAT WE'RE DOING AND 2535 01:34:01,600 --> 01:34:04,760 WHAT WE WANT TO ACCOMPLISH. 2536 01:34:04,760 --> 01:34:05,360 NEXT SLIDE, PLEASE. 2537 01:34:05,360 --> 01:34:10,880 AND HERE IS OUR COMMUNITY 2538 01:34:10,880 --> 01:34:11,600 ADVISORY BOARD. 2539 01:34:11,600 --> 01:34:14,160 WE ARE IN NORTHERN WISCONSIN, 2540 01:34:14,160 --> 01:34:16,840 ONE OF 11 TRIBES THERE AND THEY 2541 01:34:16,840 --> 01:34:19,520 ARE KEY ADVISERS FOR OUR WORK IN 2542 01:34:19,520 --> 01:34:21,280 THE ONIDA COMMUNITY. 2543 01:34:21,280 --> 01:34:23,880 SO AGAIN, THIS IS JUST ONE 2544 01:34:23,880 --> 01:34:26,880 EXAMPLE OF COMMUNITY ENGAGEMENT. 2545 01:34:26,880 --> 01:34:27,200 NEXT SLIDE. 2546 01:34:27,200 --> 01:34:29,840 BUT I WANT TO EMPHASIZE AGAIN, 2547 01:34:29,840 --> 01:34:31,840 THINK BROADLY ABOUT WHAT 2548 01:34:31,840 --> 01:34:33,640 INVESTMENTS YOU MAKE. 2549 01:34:33,640 --> 01:34:34,760 BE PRE FIRED ANSWER QUESTIONS 2550 01:34:34,760 --> 01:34:36,600 LIKE HOW DOES THIS BENEFIT THE 2551 01:34:36,600 --> 01:34:36,880 COMMUNITY? 2552 01:34:36,880 --> 01:34:38,800 HOW WILL THE DATA YOU COLLECT 2553 01:34:38,800 --> 01:34:41,360 COME BACK AND SERVE THE 2554 01:34:41,360 --> 01:34:41,880 COMMUNITY? 2555 01:34:41,880 --> 01:34:44,280 LOOK AT YOUR HIRING PRACTICES. 2556 01:34:44,280 --> 01:34:46,640 INVEST IN BLACK AND INDIGENCES 2557 01:34:46,640 --> 01:34:47,600 BUSINESSES IN THE CASE WHAT WE 2558 01:34:47,600 --> 01:34:49,840 ARE DOING WITH OUR ENGAGEMENT 2559 01:34:49,840 --> 01:34:50,840 WITH BLACK AND INDIGENOUS 2560 01:34:50,840 --> 01:34:51,480 COMMUNITIES. 2561 01:34:51,480 --> 01:34:54,080 INVEST IN TRAINEES FROM THOSE 2562 01:34:54,080 --> 01:34:54,400 COMMUNITIES. 2563 01:34:54,400 --> 01:34:56,400 PEOPLE WANT TO SEE THE RESEARCH 2564 01:34:56,400 --> 01:34:57,760 GO FORWARD WITH PEOPLE WHO LOOK 2565 01:34:57,760 --> 01:34:58,160 LIKE THEM. 2566 01:34:58,160 --> 01:34:59,800 AND I WAS HAPPY TO CATCH THE 2567 01:34:59,800 --> 01:35:01,680 TAIL END OF THE CONVERSATION 2568 01:35:01,680 --> 01:35:06,600 ABOUT BUILDING ADVOCACY OR 2569 01:35:06,600 --> 01:35:08,760 BUILDING -- STRENGTHENING THE 2570 01:35:08,760 --> 01:35:09,400 BENCH OF RESEARCHERS COMING UP 2571 01:35:09,400 --> 01:35:11,720 WHO ARE COMING FROM THESE 2572 01:35:11,720 --> 01:35:12,640 COMMUNITIES. 2573 01:35:12,640 --> 01:35:13,440 INCLUDE TRAINEES AND STAFF FROM 2574 01:35:13,440 --> 01:35:16,400 THE COMMUNITIES BEING STUDIED. 2575 01:35:16,400 --> 01:35:19,680 NEXT SLIDE, PLEASE. 2576 01:35:19,680 --> 01:35:21,600 SO JUST AGAIN, LET'S JUST 2577 01:35:21,600 --> 01:35:24,400 ACKNOWLEDGE OUR CULTURE AS 2578 01:35:24,400 --> 01:35:25,560 RESEARCHERS AND HOW WE TEND TO 2579 01:35:25,560 --> 01:35:28,480 APPROACH THINGS IN A WAY THAT WE 2580 01:35:28,480 --> 01:35:30,160 PRIORITIZE OUR CULTURE AS THE 2581 01:35:30,160 --> 01:35:31,640 WAY TO DO THINGS THAT WE THINK 2582 01:35:31,640 --> 01:35:34,120 DIFFERENTLY ABOUT ENGAGEMENT. 2583 01:35:34,120 --> 01:35:34,760 AND YOU'RE GOING TO HEAR A LOT 2584 01:35:34,760 --> 01:35:37,720 MORE ABOUT HOW THIS PLAYS OUT 2585 01:35:37,720 --> 01:35:42,640 BOTH IN THE IMPLEMENTATION WITH 2586 01:35:42,640 --> 01:35:43,280 THE ADORE CORE AS WELL AS WHAT 2587 01:35:43,280 --> 01:35:44,480 IT LOOKS LIKE FROM THOSE 2588 01:35:44,480 --> 01:35:45,760 ACTUALLY DOING THE WORK IN THE 2589 01:35:45,760 --> 01:35:46,200 COMMUNITY. 2590 01:35:46,200 --> 01:35:47,400 THE TRUE EXPERTS. 2591 01:35:47,400 --> 01:35:50,000 AND WITH THAT, I BELIEVE THAT'S 2592 01:35:50,000 --> 01:35:53,360 MY LAST SLIDE. 2593 01:35:53,360 --> 01:35:55,080 NEXT SLIDE, PLEASE. 2594 01:35:55,080 --> 01:35:58,400 I WANT TO JUST ACKNOWLEDGE MY 2595 01:35:58,400 --> 01:36:04,880 PARTNERS IN WISCONSIN WITH THE 2596 01:36:04,880 --> 01:36:08,600 ADORE CORE: AND YOU GET TO HEAR 2597 01:36:08,600 --> 01:36:09,640 FROM SEEING AN WITH A 2598 01:36:09,640 --> 01:36:12,640 LAST-MINUTE CHANGE OF SPEAKERS. 2599 01:36:12,640 --> 01:36:14,640 -- SIGAN. 2600 01:36:14,640 --> 01:36:16,840 I'LL TURN THINGS OVER TO MY 2601 01:36:16,840 --> 01:36:17,360 COLLEAGUE, DR. HARTLEY. 2602 01:36:17,360 --> 01:36:26,880 THANK YOU. 2603 01:36:26,880 --> 01:36:37,280 >> DR. SIGAN HARTLEY: 2604 01:36:53,440 --> 01:36:54,080 >> -- 2605 01:36:54,080 --> 01:36:57,360 >> JUST A REMINDER BEFORE YOU 2606 01:36:57,360 --> 01:37:04,240 BEGIN, TO GO A LITTLE BIT SLO 2607 01:37:04,240 --> 01:37:04,480 SLOWER. 2608 01:37:04,480 --> 01:37:11,520 >> ANNA I'M NOT ANNIE COHEN. 2609 01:37:11,520 --> 01:37:11,960 I'M SEGAN HARTLEY. 2610 01:37:11,960 --> 01:37:15,920 TODAY I'M GOING TO GIVE YOU AN 2611 01:37:15,920 --> 01:37:17,120 OVERVIEW OF THE ADORE CORE BUT 2612 01:37:17,120 --> 01:37:20,920 THIS EFFORT IS LED BY DR. COHEN. 2613 01:37:20,920 --> 01:37:22,840 SO, THE ADORE CORE STANDS FOR 2614 01:37:22,840 --> 01:37:25,360 ALZHEIMER'S DISEASE IN DOWN 2615 01:37:25,360 --> 01:37:29,360 SYNDROME OUTREACH, RECRUITMENT 2616 01:37:29,360 --> 01:37:30,600 AND ENGAGEMENT CORE. 2617 01:37:30,600 --> 01:37:33,680 AND AS THIS IS PART OF A LARGER 2618 01:37:33,680 --> 01:37:36,800 PROJECT, SO THE LARGER PROJECT 2619 01:37:36,800 --> 01:37:41,560 WE REFER TO AS ABC-DS, WHICH 2620 01:37:41,560 --> 01:37:47,080 STANDS FOR ALZHEIMER'S BIOMARKER 2621 01:37:47,080 --> 01:37:47,640 CONSORTIUM DOYNE SYNDROME. 2622 01:37:47,640 --> 01:37:52,840 AND IN DEVELOPING THIS LARGE 2623 01:37:52,840 --> 01:37:55,640 GRANT, AT THE VERY ONSET THERE 2624 01:37:55,640 --> 01:37:57,160 WAS A BIG EMPHASIS ON MAKING 2625 01:37:57,160 --> 01:38:01,360 SURE WE HAD A CORE THAT WAS 2626 01:38:01,360 --> 01:38:03,560 SPECIFICALLY DEVOTED TO 2627 01:38:03,560 --> 01:38:05,200 PARTNERING WITH COMMUNITIES. 2628 01:38:05,200 --> 01:38:07,360 WHEN WE THINK ABOUT BOTH SORT OF 2629 01:38:07,360 --> 01:38:08,400 WHAT WE'RE GOING TO DO, THE 2630 01:38:08,400 --> 01:38:11,000 QUESTIONS, BUT ALSO IN TERMS OF 2631 01:38:11,000 --> 01:38:12,640 ENGAGEMENT IN RESEARCH AND THE 2632 01:38:12,640 --> 01:38:17,400 EDUCATION WE PROVIDE BACK. 2633 01:38:17,400 --> 01:38:21,600 NEXT SLIDE, PLEASE. 2634 01:38:21,600 --> 01:38:23,680 SO THE THREE BIG AIMS OF THE 2635 01:38:23,680 --> 01:38:26,160 ADORE CORE ARE ONE, TO GENERATE 2636 01:38:26,160 --> 01:38:29,120 AND DISSEMINATE EDUCATIONAL 2637 01:38:29,120 --> 01:38:30,640 MATERIALS REGARDING THE 2638 01:38:30,640 --> 01:38:32,520 IMPORTANCE OF RESEARCH AND 2639 01:38:32,520 --> 01:38:35,440 RESEARCH METHODS TARGETING 2640 01:38:35,440 --> 01:38:37,960 ALZHEIMER'S DISEASE AND ADULTS 2641 01:38:37,960 --> 01:38:38,400 WITH DOWN SYNDROME. 2642 01:38:38,400 --> 01:38:41,000 SO THIS FIRST GOAL WAS TO SAY 2643 01:38:41,000 --> 01:38:42,600 THAT WHEN WE THINK ABOUT 2644 01:38:42,600 --> 01:38:44,920 RESEARCH IN ALZHEIMER DISEASE, 2645 01:38:44,920 --> 01:38:47,040 THERE IS A LOT OF JARGON. 2646 01:38:47,040 --> 01:38:47,680 THERE IS A LOT OF MEDICAL TERMS. 2647 01:38:47,680 --> 01:38:51,800 THERE IS A LOT OF PROCEDURES 2648 01:38:51,800 --> 01:38:53,560 WHICH OFTEN WE FORGET THAT WE 2649 01:38:53,560 --> 01:38:55,880 SORT OF NEED TO DEMYSTIFY. 2650 01:38:55,880 --> 01:38:57,320 SO MAKE SURE THAT THE RESEARCH 2651 01:38:57,320 --> 01:39:01,000 IS APPROACHABLE, THAT WE CAN 2652 01:39:01,000 --> 01:39:02,080 HELP SORT OF EDUCATE THE 2653 01:39:02,080 --> 01:39:03,640 COMMUNITY ABOUT THESE METHODS 2654 01:39:03,640 --> 01:39:04,520 AND WHAT RESEARCH IS. 2655 01:39:04,520 --> 01:39:06,000 SO ONE OF THE BIG GOALS WAS JUST 2656 01:39:06,000 --> 01:39:08,480 TO SORT OF PROVIDE THAT 2657 01:39:08,480 --> 01:39:11,480 EDUCATION ABOUT WHAT IS THIS 2658 01:39:11,480 --> 01:39:11,760 RESEARCH? 2659 01:39:11,760 --> 01:39:12,560 WHY IS IT IMPORTANT? 2660 01:39:12,560 --> 01:39:15,120 AND WHAT DOES IT INVOLVE? 2661 01:39:15,120 --> 01:39:16,440 THE SECOND AIM WAS A LITTLE BIT 2662 01:39:16,440 --> 01:39:20,680 MORE SPECIFIC AND THAT WAS TO 2663 01:39:20,680 --> 01:39:21,200 GENERATE AND DISSEMINATE 2664 01:39:21,200 --> 01:39:23,480 EDUCATIONAL MATERIALS REGARDING 2665 01:39:23,480 --> 01:39:25,600 BRAIN AGING IN ALZHEIMER DISEASE 2666 01:39:25,600 --> 01:39:29,200 AND DOWN SYNDROME SPECIFICALLY 2667 01:39:29,200 --> 01:39:30,720 TO UNDERSERVED COMMUNITIES WITH 2668 01:39:30,720 --> 01:39:32,040 THE FOCUS ON THOSE COMMUNITIES 2669 01:39:32,040 --> 01:39:35,160 THAT WERE REALLY CLOSE TO A LOT 2670 01:39:35,160 --> 01:39:36,760 OF OUR RESEARCH SITES. 2671 01:39:36,760 --> 01:39:38,520 SO ONE OF THE THINGS THAT WE 2672 01:39:38,520 --> 01:39:42,120 WANTED TO DO IS WE WANTED EACH 2673 01:39:42,120 --> 01:39:44,000 SITE, SO THERE ARE 8 DIFFERENT 2674 01:39:44,000 --> 01:39:46,920 7/8 THAT ARE PART OF ABC-DS, TO 2675 01:39:46,920 --> 01:39:49,360 THINK ABOUT THIS AT THEIR LOCAL 2676 01:39:49,360 --> 01:39:50,280 LEVEL. 2677 01:39:50,280 --> 01:39:52,040 WHO ARE THESE UNDERSERVED 2678 01:39:52,040 --> 01:39:52,640 COMMUNITIES THAT THEY COULD 2679 01:39:52,640 --> 01:39:54,160 BUILD PARTNERSHIPS WITH AND THAT 2680 01:39:54,160 --> 01:39:55,920 THEY COULD INCLUDE AS PART OF 2681 01:39:55,920 --> 01:39:58,240 THEIR RESEARCH AND OUTREACH TEAM 2682 01:39:58,240 --> 01:39:59,040 TO PARTNER WITH. 2683 01:39:59,040 --> 01:40:01,040 THE THIRD AIM WAS THEN TO 2684 01:40:01,040 --> 01:40:03,080 INCREASE RECRUITMENT OF 2685 01:40:03,080 --> 01:40:04,840 INDIVIDUALS WITH DOWN SYNDROME 2686 01:40:04,840 --> 01:40:08,960 INTO ABC-DS COHORT FROM DIVERSE 2687 01:40:08,960 --> 01:40:12,760 POPULATIONS AND TO NOT ONLY GIVE 2688 01:40:12,760 --> 01:40:15,160 THEM TO ENROLL IN OUR STUDIES, 2689 01:40:15,160 --> 01:40:18,600 BUT ALSO TO GET THEM TO STAY IN 2690 01:40:18,600 --> 01:40:21,040 THE STUDIES TO, MAKE SURE IT'S A 2691 01:40:21,040 --> 01:40:21,640 GOOD EXPERIENCE AND THAT WE'RE 2692 01:40:21,640 --> 01:40:23,200 NOT JUST SORT OF TAKING AND 2693 01:40:23,200 --> 01:40:24,640 GETTING THEM TO BE PART OF THE 2694 01:40:24,640 --> 01:40:24,880 STUDIES. 2695 01:40:24,880 --> 01:40:28,440 BUT WE ARE GIVING BACK AND IT'S 2696 01:40:28,440 --> 01:40:31,440 A VALUABLE PARTNERSHIP THEY WANT 2697 01:40:31,440 --> 01:40:32,200 TO KEEP ONGOING OVER TIME. 2698 01:40:32,200 --> 01:40:35,240 NEXT SLIDE, PLEASE. 2699 01:40:35,240 --> 01:40:38,160 SO HOW DO WE DO THIS? 2700 01:40:38,160 --> 01:40:42,160 WELL, EACH OF THOSE 8 ABC-DS 2701 01:40:42,160 --> 01:40:45,560 RESEARCH SITES HAD MONEY WITHIN 2702 01:40:45,560 --> 01:40:48,040 THE CORE TO COVER THE COST OF A 2703 01:40:48,040 --> 01:40:49,400 FULL-TIME EMPLOYEE WHO WOULD 2704 01:40:49,400 --> 01:40:52,800 ENGAGE WITH ALL THE OTHER CORES 2705 01:40:52,800 --> 01:40:55,440 AND A CORE LEADER, DR. COHEN, 2706 01:40:55,440 --> 01:40:56,680 AROUND THESE ACTIVITIES. 2707 01:40:56,680 --> 01:41:01,640 AND ONE OF THE THINGS THAT WAS 2708 01:41:01,640 --> 01:41:03,840 FIRST ESTABLISHED WAS AN IDEA WE 2709 01:41:03,840 --> 01:41:05,360 NEEDED A PARTNERSHIP WITH A 2710 01:41:05,360 --> 01:41:06,640 COMMUNITY RESEARCH ADVISORY 2711 01:41:06,640 --> 01:41:06,840 BOARD. 2712 01:41:06,840 --> 01:41:11,000 SO ON THIS BOARD ARE SELF 2713 01:41:11,000 --> 01:41:14,720 ADVOCATES, PARENTS, SIBLINGS AND 2714 01:41:14,720 --> 01:41:16,320 THE IDEA IS THAT THIS IS THE 2715 01:41:16,320 --> 01:41:17,560 BOARD THAT HELPED GUIDE OUR 2716 01:41:17,560 --> 01:41:20,360 RESEARCH SO WE CAN SORT OF 2717 01:41:20,360 --> 01:41:22,520 UNDERSTAND WHAT EDUCATIONAL 2718 01:41:22,520 --> 01:41:24,120 MATERIALS WOULD BE HELPFUL. 2719 01:41:24,120 --> 01:41:24,600 WHAT ADDITIONAL RESEARCH 2720 01:41:24,600 --> 01:41:27,640 QUESTIONS SHOULD WE BE THINKING 2721 01:41:27,640 --> 01:41:27,840 ABOUT? 2722 01:41:27,840 --> 01:41:29,520 HOW DO WE THINK ABOUT FLYERS? 2723 01:41:29,520 --> 01:41:32,040 HOW DO WE TALK ABOUT THESE 2724 01:41:32,040 --> 01:41:32,240 METHODS? 2725 01:41:32,240 --> 01:41:34,040 SO TWO OF THE THINGS THAT THIS 2726 01:41:34,040 --> 01:41:36,360 ADVISORY BOARD IS HELPING WITH 2727 01:41:36,360 --> 01:41:41,200 IS ONE, COMMUNITY-LED TRAININGS 2728 01:41:41,200 --> 01:41:41,880 FOR THE BROADER ADORE TEAM. 2729 01:41:41,880 --> 01:41:44,360 SO TALKING FROM THEIR 2730 01:41:44,360 --> 01:41:45,520 PERSPECTIVE ABOUT THINGS THAT 2731 01:41:45,520 --> 01:41:46,920 THE COMMUNITY CARES ABOUT, 2732 01:41:46,920 --> 01:41:49,320 THINGS WE NEED TO THINK ABOUT. 2733 01:41:49,320 --> 01:41:51,480 AND SPECIFICALLY ONE THING THAT 2734 01:41:51,480 --> 01:41:54,360 WE GOT A LOT OF FEEDBACK IS A 2735 01:41:54,360 --> 01:41:55,760 RESEARCH FLYER. 2736 01:41:55,760 --> 01:41:57,600 SO EARLY ON, WE HAD WHAT WE 2737 01:41:57,600 --> 01:41:59,160 THOUGHT WAS A WONDERFUL FLYER T 2738 01:41:59,160 --> 01:42:00,560 HAD LOTS OF COLOR, LOTS OF 2739 01:42:00,560 --> 01:42:02,480 INFORMATION ABOUT THE STUDY 2740 01:42:02,480 --> 01:42:05,360 REQUIREMENTS AND VERY QUICKLY WE 2741 01:42:05,360 --> 01:42:05,960 GOT FEEDBACK THAT NO, NO, NO 2742 01:42:05,960 --> 01:42:07,840 WHAT WE REALLY NEEDED TO HAVE IS 2743 01:42:07,840 --> 01:42:10,720 A MESSAGE ABOUT WHY FAMILIES 2744 01:42:10,720 --> 01:42:11,880 SHOULD BE PART OF THE STUDY. 2745 01:42:11,880 --> 01:42:13,400 WHY IS IT MEANINGFUL? 2746 01:42:13,400 --> 01:42:14,640 WHAT IS THE END GOAL? 2747 01:42:14,640 --> 01:42:16,760 THAT WAS REALLY SOMETHING WE 2748 01:42:16,760 --> 01:42:18,520 DIDN'T ACTUALLY HAVE ON THE 2749 01:42:18,520 --> 01:42:18,720 FLYER. 2750 01:42:18,720 --> 01:42:21,920 THIS GROUP ALSO PARTNERS WITH 2751 01:42:21,920 --> 01:42:22,360 OTHER DOWN SYNDROME 2752 01:42:22,360 --> 01:42:24,680 ORGANIZATIONS SO ONE OF THE BIG 2753 01:42:24,680 --> 01:42:29,720 PARTNERS IS THE NATIONAL DOWN 2754 01:42:29,720 --> 01:42:30,200 SYNDROME SOCIETY. 2755 01:42:30,200 --> 01:42:32,000 EACH OF THE LOCAL SITES ALSO 2756 01:42:32,000 --> 01:42:34,400 IDENTIFIES THEIR LOCAL PARTNERS 2757 01:42:34,400 --> 01:42:36,240 SO FOR EXAMPLE, IN WISCONSIN, WE 2758 01:42:36,240 --> 01:42:37,240 PARTNER WITH SPECIAL OLYMPICS 2759 01:42:37,240 --> 01:42:40,640 WHO SERVES THE MADISON BUT ALSO 2760 01:42:40,640 --> 01:42:42,120 THE MILWAUKEE AREA AND ALSO 2761 01:42:42,120 --> 01:42:44,680 PARTNER WITH LOCAL GROUPS WHO 2762 01:42:44,680 --> 01:42:47,160 ARE DOING EVENTS -- KNOWA EVENT 2763 01:42:47,160 --> 01:42:50,040 AT THE ZOO IN MILWAUKEE THIS 2764 01:42:50,040 --> 01:42:50,280 WEEKEND. 2765 01:42:50,280 --> 01:42:50,720 LISTENING SESSIONS. 2766 01:42:50,720 --> 01:42:52,600 WHAT ARE THE NEEDS OF THIS 2767 01:42:52,600 --> 01:42:52,880 COMMUNITY? 2768 01:42:52,880 --> 01:42:53,920 HOW CAN WE PARTNER WITH THEM? 2769 01:42:53,920 --> 01:42:56,320 AND THEN WORKING GROUPS. 2770 01:42:56,320 --> 01:42:58,240 SO THESE WORKING GROUPS COVER 2771 01:42:58,240 --> 01:42:59,920 THINGS LIKE SOCIAL MEDIA, HOW DO 2772 01:42:59,920 --> 01:43:01,360 WE GET WORD OUT? 2773 01:43:01,360 --> 01:43:05,360 HOW ARE WE SORT OF MESSAGING AND 2774 01:43:05,360 --> 01:43:07,880 SPREADING EDUCATION? 2775 01:43:07,880 --> 01:43:09,000 NEWSLETTERS, BULLETINS. 2776 01:43:09,000 --> 01:43:10,440 ALSO, INFORMATION ON SOME OF THE 2777 01:43:10,440 --> 01:43:12,600 RESEARCH METHODS WE USE THAT 2778 01:43:12,600 --> 01:43:15,400 OFTEN CAN BE SORT OF SEEMINGLY 2779 01:43:15,400 --> 01:43:15,960 SCARIER UNKNOWN. 2780 01:43:15,960 --> 01:43:17,560 SO ONE EXAMPLE IS BRAIN 2781 01:43:17,560 --> 01:43:17,840 DONATION. 2782 01:43:17,840 --> 01:43:21,400 AND THINKING ABOUT HOW TO 2783 01:43:21,400 --> 01:43:21,920 PROVIDE SOME EDUCATION AND 2784 01:43:21,920 --> 01:43:23,920 MATERIALS ABOUT WHAT THIS IS. 2785 01:43:23,920 --> 01:43:26,040 WHY ARE WE INTERESTED IN IT? 2786 01:43:26,040 --> 01:43:29,000 WHAT IS THE BENEFITS TO THE 2787 01:43:29,000 --> 01:43:29,280 COMMUNITY? 2788 01:43:29,280 --> 01:43:29,920 AND THEN SPECIFICALLY WE HAVE 2789 01:43:29,920 --> 01:43:32,800 WORKING GROUPS RELATED TO 2790 01:43:32,800 --> 01:43:33,680 UNDERREPRESENTED GROUPS SO AGAIN 2791 01:43:33,680 --> 01:43:35,600 LOCALLY HERE IN WISCONSIN, WE 2792 01:43:35,600 --> 01:43:38,920 HAVE REALLY FOCUSED ON THE 2793 01:43:38,920 --> 01:43:42,000 LATINO GROUP AS A COMMUNITY WHO 2794 01:43:42,000 --> 01:43:44,520 HAS BEEN UNDERRESEARCHED AND 2795 01:43:44,520 --> 01:43:45,080 UNDERSERVED IN OUR COMMUNITY 2796 01:43:45,080 --> 01:43:49,640 THAT WE ARE PARTNERING WITH. 2797 01:43:49,640 --> 01:43:53,120 SO AS I MENTIONED, EACH SITE GOT 2798 01:43:53,120 --> 01:43:57,320 MONEY TO COVER THE ONE FULL-TIME 2799 01:43:57,320 --> 01:43:57,560 EMPLOYEE. 2800 01:43:57,560 --> 01:44:00,280 EARLY ON WE CONSULTED WITH 2801 01:44:00,280 --> 01:44:00,880 DR. GLEASON TO THINK ABOUT HOW 2802 01:44:00,880 --> 01:44:02,200 WE WANTED TO MAXIMIZE OUR 2803 01:44:02,200 --> 01:44:03,800 FUNDING IN WISCONSIN. 2804 01:44:03,800 --> 01:44:05,880 SO HERE WHAT WE DECIDED IS WE 2805 01:44:05,880 --> 01:44:08,080 BROKE UP THAT MONEY AND ACTUALLY 2806 01:44:08,080 --> 01:44:09,720 DIVIDED IT AMONG THREE DIFFERENT 2807 01:44:09,720 --> 01:44:12,320 TEAM MEMBERS WHO WE THOUGHT 2808 01:44:12,320 --> 01:44:13,520 WOULD BE A MORE EFFECTIVE TEAM 2809 01:44:13,520 --> 01:44:15,000 AND HOPING TO REACH OUR GOALS. 2810 01:44:15,000 --> 01:44:17,760 AND SO, WHAT WE ACTUALLY WANTED 2811 01:44:17,760 --> 01:44:19,400 TO DO IS HAVE MEMBERS OF THE 2812 01:44:19,400 --> 01:44:21,840 COMMUNITY WE WANT TO PARTNER 2813 01:44:21,840 --> 01:44:24,120 WITH BE MEMBERS OF OUR OUTREACH 2814 01:44:24,120 --> 01:44:24,320 TEAM. 2815 01:44:24,320 --> 01:44:26,240 AND WE FELT VERY STRONGLY THEY 2816 01:44:26,240 --> 01:44:28,600 NEEDED TO BE PAID MEMBERS. 2817 01:44:28,600 --> 01:44:30,680 AND SO THAT IS WHAT WE DID WITH 2818 01:44:30,680 --> 01:44:33,560 THESE FREE POSITION 3 POSITIONS. 2819 01:44:33,560 --> 01:44:44,040 I'M GOING TO TURN IT OVER TO 2820 01:44:44,480 --> 01:44:52,800 DR. A NOG NOG TO TALK ABOUT HER 2821 01:44:52,800 --> 01:44:53,320 EXPERIENCES. 2822 01:44:53,320 --> 01:44:55,480 >> MY NAME IS MARIA NOGUERON AND 2823 01:44:55,480 --> 01:45:00,280 I'M A LATINA MOTHER OF A YOUNG 2824 01:45:00,280 --> 01:45:02,080 WOMAN WITH DOWN SYNDROME. 2825 01:45:02,080 --> 01:45:04,560 SO WE ARE STAKEHOLDERS. 2826 01:45:04,560 --> 01:45:08,160 WE REALLY WANT TO BE PART OF 2827 01:45:08,160 --> 01:45:08,880 THIS. 2828 01:45:08,880 --> 01:45:10,960 AND I THINK THE REASON I WAS 2829 01:45:10,960 --> 01:45:13,360 SELECTED IS BECAUSE I'M VERY 2830 01:45:13,360 --> 01:45:15,600 ACTIVE IN MY COMMUNITY SO THEY 2831 01:45:15,600 --> 01:45:18,000 CAN RECOGNIZE ME AS AN ADVOCATE 2832 01:45:18,000 --> 01:45:21,960 THAT HAS BEEN DOING THIS PEER 2833 01:45:21,960 --> 01:45:22,680 RELATIONSHIPS WITH OTHER PARENTS 2834 01:45:22,680 --> 01:45:25,040 FOR A LONG TIME. 2835 01:45:25,040 --> 01:45:27,000 AND THAT HAVE BEEN NOT ONLY FOR 2836 01:45:27,000 --> 01:45:30,040 DOWN SYNDROME BUT FOR OTHER 2837 01:45:30,040 --> 01:45:31,880 DISABILITIES AND THAT WAS VERY 2838 01:45:31,880 --> 01:45:32,160 IMPORTANT. 2839 01:45:32,160 --> 01:45:34,520 SO I WOULD SAY THAT WHEN YOU 2840 01:45:34,520 --> 01:45:39,560 IDENTIFY STAKEHOLDERS, YOU WANT 2841 01:45:39,560 --> 01:45:40,720 PEOPLE -- NOT ONLY BECAUSE OF 2842 01:45:40,720 --> 01:45:42,320 LANGUAGE OR THE LAST NAME OR 2843 01:45:42,320 --> 01:45:45,200 SKIN COLOR, BUT ALSO THAT THE 2844 01:45:45,200 --> 01:45:45,640 COMMUNITY KNOWS. 2845 01:45:45,640 --> 01:45:53,400 THAT THEY HAVE BEEN DOING THIS 2846 01:45:53,400 --> 01:45:54,680 OUT OF FOCUS, WHICH IS 2847 01:45:54,680 --> 01:45:56,360 IMPORTANT. 2848 01:45:56,360 --> 01:45:57,840 I ALSO HAVE LEARNED, AND THIS IS 2849 01:45:57,840 --> 01:46:01,400 SOMETHING VERY IMPORTANT, THAT 2850 01:46:01,400 --> 01:46:02,720 DISSEMINATION AND EDUCATION ARE 2851 01:46:02,720 --> 01:46:05,400 KEY ELEMENTS OF ADDRESSING ANY 2852 01:46:05,400 --> 01:46:05,680 POPULATION. 2853 01:46:05,680 --> 01:46:10,520 BUT PARTICULARLY UNDERSERVED 2854 01:46:10,520 --> 01:46:11,320 POPULATIONS THAT MAY NOT HAVE 2855 01:46:11,320 --> 01:46:15,160 HAD GOOD EXPERIENCES WITH 2856 01:46:15,160 --> 01:46:16,080 BIOMEDICAL COMMUNITY EITHER 2857 01:46:16,080 --> 01:46:17,520 THROUGH HEALTH CARE SERVICES OR 2858 01:46:17,520 --> 01:46:17,920 THROUGH RESEARCH. 2859 01:46:17,920 --> 01:46:25,960 AND I'M NOT TALKING ABOUT JUST 2860 01:46:25,960 --> 01:46:31,920 TO TALK ABOUT THE IDEA OF THIS 2861 01:46:31,920 --> 01:46:34,680 HISTORICAL OR ALL OF THIS OTHER 2862 01:46:34,680 --> 01:46:36,120 EVIDENCE, BUT JUST SIMPLY LIKE 2863 01:46:36,120 --> 01:46:40,200 IF A FAMILY DOESN'T HAVE 2864 01:46:40,200 --> 01:46:42,400 TRANSPORTATION, THE SON IS 2865 01:46:42,400 --> 01:46:43,000 THROWING A TANTRUM BECAUSE HE 2866 01:46:43,000 --> 01:46:44,320 DOESN'T WANT TO GO TO THE DOCTOR 2867 01:46:44,320 --> 01:46:45,760 AND YOU MISSED YOUR BUS, YOUR 2868 01:46:45,760 --> 01:46:47,320 RIDE TO THE DOCTOR AND YOUR 2869 01:46:47,320 --> 01:46:51,440 APPOINTMENT HAS BEEN CANCELED. 2870 01:46:51,440 --> 01:46:53,360 AND YOUR FAMILY WHO RECEIVES 2871 01:46:53,360 --> 01:46:55,360 MEDICAID OR SELF ADVOCATES AND 2872 01:46:55,360 --> 01:46:57,600 TRANSPORTATION IS A PROBLEM AND 2873 01:46:57,600 --> 01:46:58,000 MEDICAID. 2874 01:46:58,000 --> 01:47:00,600 WHO IS GOING TO BE PAYING FOR 2875 01:47:00,600 --> 01:47:00,800 THIS? 2876 01:47:00,800 --> 01:47:05,400 WHAT IF I LOSE MY JOB? 2877 01:47:05,400 --> 01:47:07,880 AND I GET THOSE ARE VERY 2878 01:47:07,880 --> 01:47:11,120 IMPORTANT CURRENT EXPERIENCES 2879 01:47:11,120 --> 01:47:13,360 THAT NEED TO BE THOUGHT WHEN WE 2880 01:47:13,360 --> 01:47:16,120 ARE APPROACHING OTHER 2881 01:47:16,120 --> 01:47:16,440 POPULATIONS. 2882 01:47:16,440 --> 01:47:20,880 WHAT ARE THE LOGISTICS TO VISIT? 2883 01:47:20,880 --> 01:47:24,480 LAB RESPONSE HAS BEEN OBVIOUSLY 2884 01:47:24,480 --> 01:47:29,360 TO CREATE A SPANISH-SPEAKING 2885 01:47:29,360 --> 01:47:31,360 LINE OF COMMUNICATION AND 2886 01:47:31,360 --> 01:47:34,520 ESTABLISH THAT PEOPLE DESERVE 2887 01:47:34,520 --> 01:47:36,680 COMPENSATION FOR THEIR TIME AND 2888 01:47:36,680 --> 01:47:38,600 PARTICIPATION BECAUSE THEY ARE 2889 01:47:38,600 --> 01:47:40,360 WELCOME AS PARTNERS AND THEN 2890 01:47:40,360 --> 01:47:44,120 THEY CAN ACCOMMODATE THEM BY 2891 01:47:44,120 --> 01:47:45,200 THINKING OUTSIDE OF THE BOX. 2892 01:47:45,200 --> 01:47:47,120 LIKE OKAY, THEY HAVE TO COME TWO 2893 01:47:47,120 --> 01:47:50,920 DAYS FOR THE LAB, BUT THEY 2894 01:47:50,920 --> 01:47:53,400 MAY -- WHAT IF WE JUST DECIDE TO 2895 01:47:53,400 --> 01:47:56,840 DO SOME PART OF THE WRITTEN, 2896 01:47:56,840 --> 01:47:58,160 PSYCHOLOGICAL, COGNITIVE -- 2897 01:47:58,160 --> 01:48:00,160 MAYBE CAN BE DONE IN THEIR 2898 01:48:00,160 --> 01:48:01,360 COMMUNITY, MAYBE DONE AT HOME 2899 01:48:01,360 --> 01:48:04,400 WHEN THEY WILL FEEL MORE 2900 01:48:04,400 --> 01:48:05,480 COMFORTABLE AND JUST BRING THEM 2901 01:48:05,480 --> 01:48:07,680 TO THE CENTER WHEN WE REALLY 2902 01:48:07,680 --> 01:48:08,640 NEED TO BE HERE. 2903 01:48:08,640 --> 01:48:09,560 AND THAT'S VERY IMPORTANT 2904 01:48:09,560 --> 01:48:15,520 BECAUSE IT'S A WAY TO LOOKING AT 2905 01:48:15,520 --> 01:48:16,160 THE LOGISTICS INTO THIS 2906 01:48:16,160 --> 01:48:21,000 POPULATION AND TRY TO SHOW THAT 2907 01:48:21,000 --> 01:48:22,680 WE ARE THINKING WITH EMPATHY 2908 01:48:22,680 --> 01:48:24,320 ABOUT THEIR POSITION. 2909 01:48:24,320 --> 01:48:26,160 THE THIRD THING THAT I GET IS 2910 01:48:26,160 --> 01:48:27,720 VERY IMPORTANT WHEN YOU'RE 2911 01:48:27,720 --> 01:48:32,560 TALKING ABOUT COMMUNITY LIAISON. 2912 01:48:32,560 --> 01:48:35,320 YOU HAVE TO UNDERSTAND THAT YES, 2913 01:48:35,320 --> 01:48:36,680 IT'S GOOD FOR ME TO HAVE ALL 2914 01:48:36,680 --> 01:48:38,560 THOSE LETTERS BEHIND MY NAME BUT 2915 01:48:38,560 --> 01:48:41,000 THE MOST IMPORTANT THING IS THAT 2916 01:48:41,000 --> 01:48:46,360 I'M ISABEL'S MOM AND AS SUCH, I 2917 01:48:46,360 --> 01:48:47,080 PARTICIPATE IN MORE PEOPLE 2918 01:48:47,080 --> 01:48:48,680 TRAINING THAT IS NOT ONLY THAT 2919 01:48:48,680 --> 01:48:51,440 YOU UNDERSTAND HOW TO SPEAK, HOW 2920 01:48:51,440 --> 01:48:56,560 TO ADDRESS, HOW TO MAKE YOUR 2921 01:48:56,560 --> 01:48:58,520 POINTS, BUT ALSO NETWORKING. 2922 01:48:58,520 --> 01:49:01,960 AND NETWORKING AND GIVE YOU THE 2923 01:49:01,960 --> 01:49:04,080 TOOLS AND THE EMPOWERMENT TO 2924 01:49:04,080 --> 01:49:11,600 TALK TO LEGISLATORS AND TO 2925 01:49:11,600 --> 01:49:12,600 RESEARCHERS TO MOVE AND 2926 01:49:12,600 --> 01:49:13,560 LEARN,USE PLAIN LANGUAGE. 2927 01:49:13,560 --> 01:49:17,400 I WOULD LIKE TO POINT THAT DANNY 2928 01:49:17,400 --> 01:49:20,920 AND I ARE GRADUATES FROM THE 2929 01:49:20,920 --> 01:49:26,320 LEADERSHIP EDUCATION IN MENTAL 2930 01:49:26,320 --> 01:49:27,480 DISABILITIES PROGRAM. 2931 01:49:27,480 --> 01:49:30,160 AND IT'S PART OF THE MOTHER AND 2932 01:49:30,160 --> 01:49:34,320 CHILD HEALTH SYSTEM. 2933 01:49:34,320 --> 01:49:36,680 SO WE IDENTIFY AND I HAVE MET 2934 01:49:36,680 --> 01:49:38,800 OTHER PEOPLE THERE. 2935 01:49:38,800 --> 01:49:41,520 AND EMPOWER ALSO MEANS TO LOOK 2936 01:49:41,520 --> 01:49:44,480 TO EDUCATE YOUR LIAISONS. 2937 01:49:44,480 --> 01:49:46,480 LOOK FOR MATERIALS THAT ARE 2938 01:49:46,480 --> 01:49:49,800 MAYBE WITHOUT DESTROYING THE 2939 01:49:49,800 --> 01:49:50,840 CONCEPT. 2940 01:49:50,840 --> 01:49:52,760 ALSO, PROVIDE WITH A GOOD 2941 01:49:52,760 --> 01:49:55,360 INFORMATION SO THEY FEEL 2942 01:49:55,360 --> 01:49:56,160 CONFIDENT WHEN THEY NEED TO 2943 01:49:56,160 --> 01:49:57,520 EXPLAIN WHAT THE RESEARCH IS 2944 01:49:57,520 --> 01:49:57,760 ABOUT. 2945 01:49:57,760 --> 01:50:01,360 SO NOT ONLY THE RESEARCH BUT THE 2946 01:50:01,360 --> 01:50:04,320 BACKGROUND AND THE INSTITUTION 2947 01:50:04,320 --> 01:50:05,200 ITSELF. 2948 01:50:05,200 --> 01:50:06,080 WHAT THIS INSTITUTION IS DOING. 2949 01:50:06,080 --> 01:50:09,920 I WOULD SAY I CAME IN CONTACT 2950 01:50:09,920 --> 01:50:15,880 WITH DR. HARTLEY LAB 5 YEARS AGO 2951 01:50:15,880 --> 01:50:18,200 THROUGH SOMETHING THEY WERE 2952 01:50:18,200 --> 01:50:20,040 CALLED THE EXPERTS. 2953 01:50:20,040 --> 01:50:21,600 AND MY DAUGHTER WAS 20. 2954 01:50:21,600 --> 01:50:26,240 SO I WENT 5 YEARS WITH HER BEING 2955 01:50:26,240 --> 01:50:27,160 PART OF THE STUDY. 2956 01:50:27,160 --> 01:50:28,800 BUT THE CENTER WAS DOING THIS 2957 01:50:28,800 --> 01:50:30,240 AND THEY WERE THE EXPERTS. 2958 01:50:30,240 --> 01:50:32,760 I WOULDN'T BE AWARE OF ALL THE 2959 01:50:32,760 --> 01:50:34,000 GOOD THINGS THAT ARE HAPPENING 2960 01:50:34,000 --> 01:50:38,640 AT WISE MAN CENTER. 2961 01:50:38,640 --> 01:50:42,680 THE OTHER THING THAT I WOULD 2962 01:50:42,680 --> 01:50:47,480 LIKE TO EXPLAIN IS, DICTATION. 2963 01:50:47,480 --> 01:50:48,680 I JUST -- WE ARE DOING A SHIFT 2964 01:50:48,680 --> 01:50:50,000 IN THE PARADIGM. 2965 01:50:50,000 --> 01:50:52,560 WE ARE TALKING ABOUT PLAIN 2966 01:50:52,560 --> 01:50:52,800 LANGUAGE. 2967 01:50:52,800 --> 01:50:56,880 SO WHEN WE PRESENT OUR RESEARCH, 2968 01:50:56,880 --> 01:51:00,680 THE FLYER WAS NOT APPROPRIATE 2969 01:51:00,680 --> 01:51:02,440 FOR FAMILIES TO CONNECT OR FOR 2970 01:51:02,440 --> 01:51:04,080 SELF ADVOCATES BECAUSE PEOPLE 2971 01:51:04,080 --> 01:51:06,480 WITH DOWN SYNDROME IS VERY 2972 01:51:06,480 --> 01:51:07,600 IMPORTANT TO COMMUNICATE. 2973 01:51:07,600 --> 01:51:11,720 SO WE NEED TO CHANGE THAT. 2974 01:51:11,720 --> 01:51:15,880 WE ALSO -- FAMILIES NEED TO 2975 01:51:15,880 --> 01:51:17,080 UNDERSTAND, AND I THINK A LOT OF 2976 01:51:17,080 --> 01:51:19,160 RESEARCH TOO, IS MAYBE THE MORE 2977 01:51:19,160 --> 01:51:21,400 APPROPRIATE MODEL IS THAT OF 2978 01:51:21,400 --> 01:51:23,600 COMMUNITY OF PRACTICES IN WHICH 2979 01:51:23,600 --> 01:51:27,120 WE ARE BOUNDED AS BROKERS SO WE 2980 01:51:27,120 --> 01:51:28,960 MOVE BETWEEN DEEPER COMMUNITIES 2981 01:51:28,960 --> 01:51:31,640 OF PRACTICES AND WE COME WITH 2982 01:51:31,640 --> 01:51:34,800 THE COMMON GOAL, COMMON MISSION 2983 01:51:34,800 --> 01:51:37,360 AND WE ALL PARTICIPATE IN THE 2984 01:51:37,360 --> 01:51:39,600 CREATION OF THE FINAL PRODUCT, 2985 01:51:39,600 --> 01:51:41,040 NOT JUST THE COMMERCIAL PRODUCT 2986 01:51:41,040 --> 01:51:44,520 BUT IN EDUCATION AND 2987 01:51:44,520 --> 01:51:45,360 DISSEMINATION, IMPROVING THE 2988 01:51:45,360 --> 01:51:51,040 LIFE OF PEOPLE WITH DISABILITIES 2989 01:51:51,040 --> 01:51:51,280 PRODUCT. 2990 01:51:51,280 --> 01:51:54,360 SO IT TAKES TIME BUT WHAT I WANT 2991 01:51:54,360 --> 01:51:57,560 TO DO, I WANT TO SAY THAT. 2992 01:51:57,560 --> 01:52:01,680 AND TO GIVE DICTATION, REMEMBER. 2993 01:52:01,680 --> 01:52:03,960 AND I BET A LOT OF YOU HAVE 2994 01:52:03,960 --> 01:52:08,320 FAMILIES AND HAVE A LOT OF 2995 01:52:08,320 --> 01:52:08,880 COLLEAGUES THAT WE HAVE BEEN 2996 01:52:08,880 --> 01:52:09,560 THEY ARE PROFICIENT IN LANGUAGE, 2997 01:52:09,560 --> 01:52:11,400 PREFER TO USE THEIR OWN 2998 01:52:11,400 --> 01:52:12,320 LANGUAGE. 2999 01:52:12,320 --> 01:52:16,360 SO PEOPLE HAVE TIME TRANSLATING, 3000 01:52:16,360 --> 01:52:18,680 NOT ONLY THE RESEARCH BUT THE 3001 01:52:18,680 --> 01:52:20,720 ENGLISH TOO. 3002 01:52:20,720 --> 01:52:24,680 AND JUST BE A CONTINUOUS 3003 01:52:24,680 --> 01:52:24,960 PRESENCE. 3004 01:52:24,960 --> 01:52:26,000 WOULD HARTLEY'S RESPONSE TO 3005 01:52:26,000 --> 01:52:27,600 POINT OF DICTATION. 3006 01:52:27,600 --> 01:52:29,360 LAST YEAR WE START GOING TO 3007 01:52:29,360 --> 01:52:31,400 CIRCLE SUPPLY, A FAMILY 3008 01:52:31,400 --> 01:52:32,840 CONFERENCE IN WISCONSIN. 3009 01:52:32,840 --> 01:52:33,880 THIS YEAR WE ARE COMING. 3010 01:52:33,880 --> 01:52:36,680 LAST YEAR WE DO IT AS A TEAM, 3011 01:52:36,680 --> 01:52:37,040 PACKING FLYERS. 3012 01:52:37,040 --> 01:52:39,360 THIS YEAR WE ARE COMING AS 3013 01:52:39,360 --> 01:52:40,040 PARTICIPANTS TO TALK WITH THEM 3014 01:52:40,040 --> 01:52:42,240 WHAT WE HAVE LEARNED AND WHAT WE 3015 01:52:42,240 --> 01:52:44,840 HAVE BEEN DOING IN THE LAST YEAR 3016 01:52:44,840 --> 01:52:46,600 TO REMIND US THAT THE LAB DOORS 3017 01:52:46,600 --> 01:52:48,480 ARE ALWAYS OPEN. 3018 01:52:48,480 --> 01:52:51,000 THAT THIS IS A RESEARCH THAT IS 3019 01:52:51,000 --> 01:52:53,840 VERY IMPORTANT FOR THE ABC 3020 01:52:53,840 --> 01:52:54,320 COMMUNITY. 3021 01:52:54,320 --> 01:52:58,600 -- ABC-DS COMMUNITY BECAUSE 3022 01:52:58,600 --> 01:53:01,360 THESE BIOMARKERS MAKE A 3023 01:53:01,360 --> 01:53:02,040 DIFFERENCE. 3024 01:53:02,040 --> 01:53:03,760 LIFESTYLE IS INCLUDED. 3025 01:53:03,760 --> 01:53:05,880 WE NEED LATINOS TO GIVE OUR 3026 01:53:05,880 --> 01:53:06,080 VOICE. 3027 01:53:06,080 --> 01:53:07,800 WE ARE COMING BACK AND WE WILL 3028 01:53:07,800 --> 01:53:11,640 BE BACK NEXT YEAR AND PROBABLY 3029 01:53:11,640 --> 01:53:14,880 EVERY YEAR AS LONG AS AS THIS 3030 01:53:14,880 --> 01:53:16,120 CONTINUES. 3031 01:53:16,120 --> 01:53:18,960 I WANT TO SAY WHAT I HAVE 3032 01:53:18,960 --> 01:53:22,200 LEARNED AND MY MENTAL 3033 01:53:22,200 --> 01:53:24,680 DEVELOPMENT IN A YEAR WORKING IN 3034 01:53:24,680 --> 01:53:28,720 THIS ABC-DS PROJECT AND 3035 01:53:28,720 --> 01:53:32,560 OBVIOUSLY TO POINT OUT THAT I 3036 01:53:32,560 --> 01:53:33,360 START -- BECAUSE MY DAUGHTER 3037 01:53:33,360 --> 01:53:34,240 WANTS TO BE THERE. 3038 01:53:34,240 --> 01:53:36,480 MY DAUGHTER NOW CAN HARDLY WAIT 3039 01:53:36,480 --> 01:53:39,200 TO GO TO THE WISE MAN CENTER TO 3040 01:53:39,200 --> 01:53:48,040 HAVE PICTURES OF HER BRAIN TAK 3041 01:53:48,040 --> 01:53:48,240 TAKEN. 3042 01:53:48,240 --> 01:53:57,280 THANK YOU. 3043 01:53:57,280 --> 01:53:59,000 >> I WORK CLOSELY WITH THE 3044 01:53:59,000 --> 01:54:00,600 FAMILIES IN OUR RESEARCH STUDY 3045 01:54:00,600 --> 01:54:03,680 BUT I ALSO WORK CLOSELY WITH THE 3046 01:54:03,680 --> 01:54:05,360 COMMUNITY PARTNERS LIKE MARIA 3047 01:54:05,360 --> 01:54:07,360 AND DANNY. 3048 01:54:07,360 --> 01:54:10,160 SO, YOU JUST MET MARIA AND SHE 3049 01:54:10,160 --> 01:54:12,800 IS OUR LATINA MOTHER WORKING AT 3050 01:54:12,800 --> 01:54:15,000 TO RECRUIT MEMBERS OF THE LATINO 3051 01:54:15,000 --> 01:54:17,880 COMMUNITY IN WISCONSIN TO OUR 3052 01:54:17,880 --> 01:54:19,000 ABC-DS RESEARCH STUDY. 3053 01:54:19,000 --> 01:54:20,600 AND YOU WILL MEET DANNY SHORTLY 3054 01:54:20,600 --> 01:54:22,480 AS A SELF ADD SEE CAT MEMBER OF 3055 01:54:22,480 --> 01:54:24,200 OUR STUDY -- ADVOCATE. 3056 01:54:24,200 --> 01:54:27,800 HE IS ON THE LEFT IN THE 3057 01:54:27,800 --> 01:54:28,080 PHOTOGRAPH. 3058 01:54:28,080 --> 01:54:30,280 I WAS ASKED TO SHARE A FEW 3059 01:54:30,280 --> 01:54:31,880 LESSONS I HAVE LEARNED BEING IN 3060 01:54:31,880 --> 01:54:33,160 THE ROLE AS MORE OR LESS THE 3061 01:54:33,160 --> 01:54:34,440 LIAISON BETWEEN OUR COMMUNITY 3062 01:54:34,440 --> 01:54:36,720 PARTNERS AND OUR ACADEMIC OR 3063 01:54:36,720 --> 01:54:39,440 RESEARCH COMMUNITY HERE AT 3064 01:54:39,440 --> 01:54:39,760 UW-MADISON. 3065 01:54:39,760 --> 01:54:41,360 SO THE FIRST LESSON THAT I 3066 01:54:41,360 --> 01:54:43,640 LEARNED WAS HOW TO SET GOOD 3067 01:54:43,640 --> 01:54:46,480 BOUNDARIES WHILE STILL REMAINING 3068 01:54:46,480 --> 01:54:46,760 FLEXIBLE. 3069 01:54:46,760 --> 01:54:47,360 BOUNDARIES LOOK DIFFERENT WITH 3070 01:54:47,360 --> 01:54:48,880 OUR COMMUNITY PARTNERS THAN THEY 3071 01:54:48,880 --> 01:54:51,920 OFTEN DO WITH MY OTHER 3072 01:54:51,920 --> 01:54:55,280 COLLEAGUES AT THE UNIVERSITY OF 3073 01:54:55,280 --> 01:54:58,480 THE I TYPICALLY DO NOT HOLD 3074 01:54:58,480 --> 01:54:59,960 MEETINGS WITH COLLEAGUES OUTSIDE 3075 01:54:59,960 --> 01:55:01,680 OF MY WORK SCHEDULE BUT I PLAC 3076 01:55:01,680 --> 01:55:03,040 AN EXCEPTION WITH THE BIWEEKLY 3077 01:55:03,040 --> 01:55:05,080 MEETINGS WE HAVE WITH MARIA AND 3078 01:55:05,080 --> 01:55:06,480 DANNY AND I ALSO HAVE TO BE 3079 01:55:06,480 --> 01:55:07,360 WILLING TO OCCASIONALLY WORK ON 3080 01:55:07,360 --> 01:55:09,520 A WEEKEND BECAUSE WE HAVE EVENTS 3081 01:55:09,520 --> 01:55:12,720 THAT HAPPEN SUCH AS BUDDY WALKS 3082 01:55:12,720 --> 01:55:16,800 AND THINGS LIKE THAT. 3083 01:55:16,800 --> 01:55:17,400 IN ADDITION, WITH ALL OF THAT 3084 01:55:17,400 --> 01:55:19,000 INFORMATION, WE NEED TO LEARN TO 3085 01:55:19,000 --> 01:55:21,000 NOT JUST LET ALL BOUNDARIES GO 3086 01:55:21,000 --> 01:55:23,400 BECAUSE OF THESE ROLES. 3087 01:55:23,400 --> 01:55:25,400 SO REGARDING COMMUNICATION, EVEN 3088 01:55:25,400 --> 01:55:27,080 THOUGH COLLEAGUES AND COMMUNITY 3089 01:55:27,080 --> 01:55:28,520 PARTNERS HAVE MY CELL PHONE 3090 01:55:28,520 --> 01:55:30,680 NUMBER, I PERSONALLY PREFER THAT 3091 01:55:30,680 --> 01:55:32,560 ANYTHING NON EMERGENCY BE 3092 01:55:32,560 --> 01:55:33,120 THROUGH E-MAIL RATHER THAN 3093 01:55:33,120 --> 01:55:34,480 PERSONAL CELL PHONE AND THIS IS 3094 01:55:34,480 --> 01:55:36,280 A PERSONAL BOUNDARY THAT I LIKE 3095 01:55:36,280 --> 01:55:36,880 TO SET. 3096 01:55:36,880 --> 01:55:38,720 WHILE THIS IS FAIRLY COMMON AND 3097 01:55:38,720 --> 01:55:40,600 IT'S ASSUMED AMONG MY RESEARCH 3098 01:55:40,600 --> 01:55:42,000 AND ACADEMIC COLLEAGUES, THIS IS 3099 01:55:42,000 --> 01:55:44,560 NOT ALWAYS A GIVEN WITH 3100 01:55:44,560 --> 01:55:45,200 COMMUNITY PARTNERS HAS REQUIRED 3101 01:55:45,200 --> 01:55:50,320 SOME TOUGH CONVERSATIONS IN THE 3102 01:55:50,320 --> 01:55:50,520 PAST. 3103 01:55:50,520 --> 01:55:53,320 WILLING TONS HAVE THESE 3104 01:55:53,320 --> 01:55:56,200 CONVERSATIONS WITH PEERS HAS 3105 01:55:56,200 --> 01:55:56,800 ALLOWED US TO COME TO RESOLUTION 3106 01:55:56,800 --> 01:55:58,640 THAT IS WORK FOR EVERYONE, 3107 01:55:58,640 --> 01:55:59,640 COMMUNITY PARTNERS AND MS. 3108 01:55:59,640 --> 01:56:00,680 ADDITIONALLY WE LEARNED HOW TO 3109 01:56:00,680 --> 01:56:02,680 SET BOUNDARIES ON WEEKENDS SO 3110 01:56:02,680 --> 01:56:04,280 YES, I STILL WORK SOME WEEKENDS, 3111 01:56:04,280 --> 01:56:06,440 HOWEVER, WE ARE PUTTING LIMITS 3112 01:56:06,440 --> 01:56:07,640 ON THAT ANDERN SURING THAT 3113 01:56:07,640 --> 01:56:09,320 EVERYONE IS MAINTAINING 3114 01:56:09,320 --> 01:56:10,480 HAPPINESS WHILE STILL DOING WHAT 3115 01:56:10,480 --> 01:56:13,360 WE NEED TO DO. 3116 01:56:13,360 --> 01:56:16,120 THE SECOND LESSON I LEARNED IN 3117 01:56:16,120 --> 01:56:16,720 THIS ROLE IS THE IMPORTANCE OF 3118 01:56:16,720 --> 01:56:18,720 LANGUAGE AND KNOWING THE 3119 01:56:18,720 --> 01:56:19,320 APPROPRIATE TERMINOLOGY TO USE 3120 01:56:19,320 --> 01:56:22,880 IN A VARIETY OF SETTINGS. 3121 01:56:22,880 --> 01:56:25,240 SO THE LARGE I USE TO DESCRIBE A 3122 01:56:25,240 --> 01:56:27,920 SITUATION TO A RESEARCHER LIKE 3123 01:56:27,920 --> 01:56:28,840 DR. HARTLEY IS VERY DIFFERENT 3124 01:56:28,840 --> 01:56:30,080 THAN THE LANGUAGE I USE TO 3125 01:56:30,080 --> 01:56:31,560 DESCRIBE THE SAME SITUATION TO A 3126 01:56:31,560 --> 01:56:33,840 PARENT AND THAT WOULD ALSO BE 3127 01:56:33,840 --> 01:56:34,600 DIFFERENT FROM LANGUAGE I WOULD 3128 01:56:34,600 --> 01:56:38,280 USE WITH A SELF-ADVOCATE. 3129 01:56:38,280 --> 01:56:41,280 LIKEWISE, I'M FREQUENTLY THE 3130 01:56:41,280 --> 01:56:43,880 RECIPIENT OF WHAT DR. AGREE SON 3131 01:56:43,880 --> 01:56:44,760 DESCRIBED TO ME AS THE WARM 3132 01:56:44,760 --> 01:56:45,840 HANDOFF AT EVENTS. 3133 01:56:45,840 --> 01:56:48,120 IT'S WHERE MARIA OR DANNY WILL 3134 01:56:48,120 --> 01:56:51,560 STRIKE UP A CONVERSATION WITH A 3135 01:56:51,560 --> 01:56:52,040 FAMILY AND BUILD THAT 3136 01:56:52,040 --> 01:56:52,760 RELATIONSHIP, AND BUILD THAT 3137 01:56:52,760 --> 01:56:53,760 COMMUNICATION AND THEN THEY'LL 3138 01:56:53,760 --> 01:56:55,560 HAND THEM OFF TO ME ONCE THAT 3139 01:56:55,560 --> 01:56:57,000 RELATIONSHIP HAS BEEN BUILT SO I 3140 01:56:57,000 --> 01:56:58,920 CAN GO OVER MORE OF THE DETAILS 3141 01:56:58,920 --> 01:57:00,720 RASHING THE STUDY. 3142 01:57:00,720 --> 01:57:02,640 WITH THAT, I NEED TO BE ABLE TO 3143 01:57:02,640 --> 01:57:05,360 READ THE ROOM AND KNOW WHEN TO 3144 01:57:05,360 --> 01:57:06,440 USE SCIENTIFIC TERMINOLOGY AND 3145 01:57:06,440 --> 01:57:09,000 WHEN TO USE MORE LAY-PERSON 3146 01:57:09,000 --> 01:57:09,880 TERMS. 3147 01:57:09,880 --> 01:57:11,320 FINALLY, I NEED TO BE ABLE TO 3148 01:57:11,320 --> 01:57:12,680 RECOGNIZE THE NEEDS AND 3149 01:57:12,680 --> 01:57:15,080 MOTIVATIONS FOR RESEARCHERS AND 3150 01:57:15,080 --> 01:57:16,080 COMMUNITY PARTNERS, RECOGNIZE 3151 01:57:16,080 --> 01:57:18,120 THAT THOSE ARE DIFFERENT AND BE 3152 01:57:18,120 --> 01:57:20,320 ABLE TO ACKNOWLEDGE, RELATE TO 3153 01:57:20,320 --> 01:57:22,200 AND WORK TOWARDS SOLUTIONS FROM 3154 01:57:22,200 --> 01:57:23,920 BOTH SIDES OF THE TABLE. 3155 01:57:23,920 --> 01:57:26,080 RESEARCHERS AND MEMBERS OF THE 3156 01:57:26,080 --> 01:57:27,600 ACADEMIC TEAM OFTEN PRIORITIZE 3157 01:57:27,600 --> 01:57:29,360 FOLLOWING A GIVEN PROCESS AND 3158 01:57:29,360 --> 01:57:30,720 PROCEDURE FOR RESEARCH. 3159 01:57:30,720 --> 01:57:31,920 THIS MAKES RESEARCH MORE 3160 01:57:31,920 --> 01:57:33,640 RELIABLE AND MAKES IT MORE 3161 01:57:33,640 --> 01:57:36,720 STREAMLINED AND OFTEN SIMPLER. 3162 01:57:36,720 --> 01:57:39,320 HOWEVER, WITH THAT, THAT CAN 3163 01:57:39,320 --> 01:57:40,040 OFTEN EXCLUDE OTHER GROUPS IF WE 3164 01:57:40,040 --> 01:57:41,600 GET STUCK IN THAT ROUTINE. 3165 01:57:41,600 --> 01:57:44,080 THEREFORE, I NEED TO BE ABLE TO 3166 01:57:44,080 --> 01:57:46,000 BRING CONCERNS LIKE WHAT MARIA 3167 01:57:46,000 --> 01:57:48,440 EXPRESSED OR WHAT DR. GLEASON 3168 01:57:48,440 --> 01:57:49,560 EXPRESSED WITH TRANSPORTATION 3169 01:57:49,560 --> 01:57:52,120 DIFFERENCES AND BEING WILLING TO 3170 01:57:52,120 --> 01:57:52,760 TRAVEL OTHER PLACES RATHER THAN 3171 01:57:52,760 --> 01:57:56,880 HAVING THEM COME TO US WHEN WE 3172 01:57:56,880 --> 01:57:57,040 CAN. 3173 01:57:57,040 --> 01:57:57,960 BEING WILLING TO TAKE THOSE TWO 3174 01:57:57,960 --> 01:57:59,760 RESEARCHERS AND FIGURE OUT HOW 3175 01:57:59,760 --> 01:58:01,360 TO IMPLEMENT THAT IN OUR STUDY 3176 01:58:01,360 --> 01:58:05,160 TO INVOLVE A WIDER POPULATION OF 3177 01:58:05,160 --> 01:58:05,400 PEOPLE? 3178 01:58:05,400 --> 01:58:07,320 SO, IN CONCLUSION, WORKING WITH 3179 01:58:07,320 --> 01:58:09,280 COMMUNITY PARTNERS DEFINITELY 3180 01:58:09,280 --> 01:58:10,640 HAS ITS CHALLENGES. 3181 01:58:10,640 --> 01:58:12,680 IT REQUIRES FLEXIBILITY. 3182 01:58:12,680 --> 01:58:13,600 IT REQUIRES VARY NATION YOUR 3183 01:58:13,600 --> 01:58:15,240 LANGUAGE AND THE TERMINOLOGY 3184 01:58:15,240 --> 01:58:18,040 THAT YOU'RE USING AND IT 3185 01:58:18,040 --> 01:58:18,680 REQUIRES YOU TO THINK OUTSIDE OF 3186 01:58:18,680 --> 01:58:21,360 THE BOX AND ENCOURAGE OTHER 3187 01:58:21,360 --> 01:58:22,240 MEMBERS OF YOUR TEAM TO DO SO AS 3188 01:58:22,240 --> 01:58:22,440 WELL. 3189 01:58:22,440 --> 01:58:24,120 THIS WILL HELP YOU MAXIMIZE 3190 01:58:24,120 --> 01:58:24,720 INCLUSION. 3191 01:58:24,720 --> 01:58:27,480 BUT WITH THAT SAID, IT IS HIGHLY 3192 01:58:27,480 --> 01:58:27,920 REWARDING. 3193 01:58:27,920 --> 01:58:29,680 I HAVE LEARNED SO MUCH BY 3194 01:58:29,680 --> 01:58:31,320 INCLUDING MARIA AND DANNY IN 3195 01:58:31,320 --> 01:58:33,640 CONVERSATIONS ON HOW TO BETTER 3196 01:58:33,640 --> 01:58:34,400 INCLUDE PEOPLE FROM DIFFERENT 3197 01:58:34,400 --> 01:58:36,280 BACKGROUNDS IN OUR STUDY. 3198 01:58:36,280 --> 01:58:38,200 SO, IN CONCLUSION, I WOULD LIKE 3199 01:58:38,200 --> 01:58:41,600 TO INTRODUCE DANNY WHO IS A 3200 01:58:41,600 --> 01:58:42,240 SELF-ADVOCATE MEMBER OF OUR TEAM 3201 01:58:42,240 --> 01:58:44,760 AND SHE GOING TO PRESENT AN 3202 01:58:44,760 --> 01:58:45,320 ORIGINAL POEM HE WROTE ABOUT 3203 01:58:45,320 --> 01:58:49,400 INCLUSION AND ABC-DS AND 3204 01:58:49,400 --> 01:58:59,920 CLINICAL RESEARCH IN GENERAL. 3205 01:59:00,440 --> 01:59:09,360 >> DANNY CHAFETZ: I AM DANNY 3206 01:59:09,360 --> 01:59:12,720 CHAFETZ. 3207 01:59:12,720 --> 01:59:19,640 I HAVE RIGHT HERE IN MY HANDS 3208 01:59:19,640 --> 01:59:19,840 TOO. 3209 01:59:19,840 --> 01:59:21,400 WHEN YOU HAVE THIS DISEASE, THE 3210 01:59:21,400 --> 01:59:31,880 MEMORY STARTS TO FADE AWAY. 3211 01:59:38,280 --> 01:59:41,880 [ READING FROM THE SCREEN ] 3212 02:00:12,560 --> 02:00:17,400 I WANT TO THANK EVERYONE AT 3213 02:00:17,400 --> 02:00:18,480 ABC-DS. 3214 02:00:18,480 --> 02:00:19,680 AND THANK YOU SO MUCH. 3215 02:00:19,680 --> 02:00:30,240 FOR MY JOURNEY I'M A MAN FINDING 3216 02:00:35,000 --> 02:00:38,520 MY WAY AND MAYBE IT'S BETTER FOR 3217 02:00:38,520 --> 02:00:47,640 ALL INCLUDED 3218 02:01:25,200 --> 02:01:25,400 >> WOW! 3219 02:01:25,400 --> 02:01:27,480 THANK YOU FOR THAT ENDING THIS 3220 02:01:27,480 --> 02:01:33,200 FANTASTIC SESSION WITH YOUR 3221 02:01:33,200 --> 02:01:33,400 POEM. 3222 02:01:33,400 --> 02:01:36,240 YOU ARE TRAILBLAZERS AND I'M 3223 02:01:36,240 --> 02:01:38,360 GRATEFUL DR. HARTLEY COULD STEP 3224 02:01:38,360 --> 02:01:48,720 IN AND ALSO FOR DR. GLEASON AND 3225 02:01:48,720 --> 02:01:54,920 DR. ANDA NOG NOG -- WE WILL TAKE 3226 02:01:54,920 --> 02:01:56,400 QUESTIONS AT THE END OF THE 3227 02:01:56,400 --> 02:01:56,640 SESSION. 3228 02:01:56,640 --> 02:02:02,640 SO NOW WE WILL MOVE ON TO THE 3229 02:02:02,640 --> 02:02:06,680 NEXT PROGRAM AND WE ARE GOING TO 3230 02:02:06,680 --> 02:02:09,400 HEAR FROM THE NATIONAL CENTER 3231 02:02:09,400 --> 02:02:12,720 FOR ADVANCING TRANSLATIONAL 3232 02:02:12,720 --> 02:02:15,160 SCIENCES NCATS FUNDED CLINICAL 3233 02:02:15,160 --> 02:02:16,840 AND TRANSLATIONAL SCIENCES AWARD 3234 02:02:16,840 --> 02:02:18,440 PROGRAM AND RECRUITMENT 3235 02:02:18,440 --> 02:02:19,080 INNOVATION CENTER IS ONE OF THE 3236 02:02:19,080 --> 02:02:21,280 KEY ORGANIZATIONAL PARTNERS IN 3237 02:02:21,280 --> 02:02:22,120 THIS INITIATIVE. 3238 02:02:22,120 --> 02:02:25,080 THERE WILL BE THREE SPEAKERS IN 3239 02:02:25,080 --> 02:02:26,120 THIS SEGMENT. 3240 02:02:26,120 --> 02:02:28,280 TIFFANY ISRAEL IS THE CORE 3241 02:02:28,280 --> 02:02:33,400 DEVELOPER OF THE COMMUNITY 3242 02:02:33,400 --> 02:02:34,280 ENGAGEMENT STUDIO FOR THE 3243 02:02:34,280 --> 02:02:35,720 RECRUITMENT INNOVATION CENTER. 3244 02:02:35,720 --> 02:02:38,320 JASMINE BELL IS ALSO A RESEARCH 3245 02:02:38,320 --> 02:02:40,520 CONSULTANT FOR THE RECRUITMENT 3246 02:02:40,520 --> 02:02:41,280 INNOVATION CENTER AND SHE 3247 02:02:41,280 --> 02:02:44,240 PROVIDES PRAGMATIC SUPPORT FOR 3248 02:02:44,240 --> 02:02:46,320 CLINICAL TRIALS THROUGH 3249 02:02:46,320 --> 02:02:48,800 COMMUNITY PARTNERSHIPS AND 3250 02:02:48,800 --> 02:02:50,360 DEVELOPING APPROPRIATE 3251 02:02:50,360 --> 02:02:51,080 RECRUITMENT MATERIALS AND 3252 02:02:51,080 --> 02:02:53,920 EDUCATING THE STUDY TEAMS. 3253 02:02:53,920 --> 02:02:55,600 DEVAN RAY IS A MANAGER OF THE 3254 02:02:55,600 --> 02:02:59,840 COMMUNITY ENGAGEMENT STUDIO OF 3255 02:02:59,840 --> 02:03:01,360 RI R AND AS WELL AS PROVIDES 3256 02:03:01,360 --> 02:03:05,400 SUPPORT ON THE NEWLY-FORMED 3257 02:03:05,400 --> 02:03:08,600 HEALTH EQUITY ACTION RESEARCH 3258 02:03:08,600 --> 02:03:09,400 TEAM CALLED HART. 3259 02:03:09,400 --> 02:03:15,240 SO THANK YOU TO ALL OF THE 3260 02:03:15,240 --> 02:03:15,520 SPEAKERS. 3261 02:03:15,520 --> 02:03:16,800 >> TIFFANY ISRAEL: THANK YOU FOR 3262 02:03:16,800 --> 02:03:18,560 HAVING US. 3263 02:03:18,560 --> 02:03:19,480 IT'S THE AFTERNOON AND I'M SURE 3264 02:03:19,480 --> 02:03:19,880 EVERYONE IS TIRED. 3265 02:03:19,880 --> 02:03:22,960 I HOPE YOU HAD A GOOD BREAK AND 3266 02:03:22,960 --> 02:03:23,920 A CHANCE TO STRETCH. 3267 02:03:23,920 --> 02:03:25,840 WE HAVE A BRIEF AMOUNT OF TIME 3268 02:03:25,840 --> 02:03:26,120 WITH YOU. 3269 02:03:26,120 --> 02:03:28,200 WE ARE EXCITED TO BELIEVE 3270 02:03:28,200 --> 02:03:28,600 PRESENTING TODAY. 3271 02:03:28,600 --> 02:03:31,960 I'M HERE WITH JASMINE AND DEVAN. 3272 02:03:31,960 --> 02:03:33,360 WE REPRESENT A WIDE RANGE OF 3273 02:03:33,360 --> 02:03:36,720 WORKING IN RESEARCH INCLUDING 3274 02:03:36,720 --> 02:03:37,360 DIVERSITY, EQUITY AND INCLUSION, 3275 02:03:37,360 --> 02:03:39,720 COMMUNITY ENGAGEMENT, SPECIAL 3276 02:03:39,720 --> 02:03:40,680 EDUCATION, SOCIAL WORK AND 3277 02:03:40,680 --> 02:03:46,880 COMMUNITY ORGANIZING. 3278 02:03:46,880 --> 02:03:47,440 >> PLEASE PACE YOURSELF, A 3279 02:03:47,440 --> 02:03:48,600 REMINDER FROM THE INTERPRETER 3280 02:03:48,600 --> 02:03:48,840 CAME IN. 3281 02:03:48,840 --> 02:03:49,440 THANK YOU. 3282 02:03:49,440 --> 02:03:51,480 >> THERE ARE MY LOVELY 3283 02:03:51,480 --> 02:03:52,880 COLLEAGUES WHO I JUST 3284 02:03:52,880 --> 02:03:53,160 REFERENCED. 3285 02:03:53,160 --> 02:03:57,280 WE'LL GO AHEAD AND JOURNAL OUR 3286 02:03:57,280 --> 02:03:57,600 NEXT SLIDE. 3287 02:03:57,600 --> 02:03:59,640 VERY QUICKLY TODAY, OUR GOAL AND 3288 02:03:59,640 --> 02:04:01,360 OUR BRIEF TIME TOGETHER IS TO 3289 02:04:01,360 --> 02:04:04,120 SHARE A FEW ACTIONABLE ITEMS 3290 02:04:04,120 --> 02:04:05,600 THAT AND YOUR TEAM CAN USE GOING 3291 02:04:05,600 --> 02:04:07,320 FORWARD TO ENHANCE THE DIVERSITY 3292 02:04:07,320 --> 02:04:08,640 OF YOUR STUDIES AS WELL AS TO 3293 02:04:08,640 --> 02:04:10,760 SHARE A HOST OF OTHER RESOURCES 3294 02:04:10,760 --> 02:04:14,640 THAT YOU WILL BE ABLE TO UTILIZE 3295 02:04:14,640 --> 02:04:15,000 POST-WORKSHOP. 3296 02:04:15,000 --> 02:04:16,040 THIS IS JUST A QUICK AGENDA 3297 02:04:16,040 --> 02:04:17,080 SETTING FOR US. 3298 02:04:17,080 --> 02:04:18,960 WE ARE GOING TO GIVE YOU A QUICK 3299 02:04:18,960 --> 02:04:21,360 INTRODUCTION TO THE RECRUITMENT 3300 02:04:21,360 --> 02:04:22,080 INNOVATION CENTER. 3301 02:04:22,080 --> 02:04:22,720 WE ARE GOING TO SET SOME CONTEXT 3302 02:04:22,720 --> 02:04:24,480 FOR OUR PRESENTATION AND THEN 3303 02:04:24,480 --> 02:04:27,200 WE'RE GOING TO HONE IN WITH SOME 3304 02:04:27,200 --> 02:04:28,600 RECOMMENDATIONS AROUND THE FOUR 3305 02:04:28,600 --> 02:04:29,360 KEY AREAS THAT YOU SEE, 3306 02:04:29,360 --> 02:04:30,400 INCLUDING THE RESEARCH 3307 02:04:30,400 --> 02:04:32,960 ENVIRONMENT, DESIGNING A STUDY, 3308 02:04:32,960 --> 02:04:34,000 COMMUNITY ENGAGEMENT AND THEN 3309 02:04:34,000 --> 02:04:35,320 LASTLY BUT CERTAINLY 3310 02:04:35,320 --> 02:04:37,360 IMPORTANTLY, IS RECRUITMENT AND 3311 02:04:37,360 --> 02:04:37,920 RETENTION. 3312 02:04:37,920 --> 02:04:39,000 SO WITH THAT, I WILL HAND THIS 3313 02:04:39,000 --> 02:04:44,360 OVER TO MY COLLEAGUE, JASMINE. 3314 02:04:44,360 --> 02:04:44,840 >> THANK YOU, TIFFANY. 3315 02:04:44,840 --> 02:04:48,360 YOU CAN GO TO THE NEXT SLIDE. 3316 02:04:48,360 --> 02:04:48,720 PERFECT. 3317 02:04:48,720 --> 02:04:50,840 SO, A BIT OF STAGE SETTING. 3318 02:04:50,840 --> 02:04:53,840 WE WORK WITHIN THE RECRUITMENT 3319 02:04:53,840 --> 02:04:54,440 INOYIVATION CENTER WITHIN THE 3320 02:04:54,440 --> 02:04:56,720 CENTER FOR CLINICAL AND 3321 02:04:56,720 --> 02:04:59,600 TRANSLATIONAL RESEARCH AT 3322 02:04:59,600 --> 02:05:00,320 VANDERBILT, A SPACE WHERE WE 3323 02:05:00,320 --> 02:05:03,320 OFFER STUDY TEAMS, 3324 02:05:03,320 --> 02:05:03,920 EVIDENCE-BASED STRATEGIES, TO 3325 02:05:03,920 --> 02:05:05,160 ADDRESS DIFFERENT RECRUITMENT 3326 02:05:05,160 --> 02:05:09,360 CHALLENGES AND GOALS. 3327 02:05:09,360 --> 02:05:10,640 NEXT SLIDE. 3328 02:05:10,640 --> 02:05:12,400 AND WE'RE ABLE TO REALLY PROVIDE 3329 02:05:12,400 --> 02:05:14,000 SUPPORT TO THESE STUDY TEAMS BY 3330 02:05:14,000 --> 02:05:16,760 WORKING ACROSS THE ENTIRE 3331 02:05:16,760 --> 02:05:17,160 RESEARCH CONTINUUM. 3332 02:05:17,160 --> 02:05:20,120 SO ALL THE WAY FROM AWARENESS 3333 02:05:20,120 --> 02:05:24,680 RAISING DOWN TO DISSEMINATING 3334 02:05:24,680 --> 02:05:27,840 STUDY RESULTS. 3335 02:05:27,840 --> 02:05:28,160 NEXT SLIDE. 3336 02:05:28,160 --> 02:05:30,640 SO I WANT TO OPEN UP WITH THIS 3337 02:05:30,640 --> 02:05:31,480 QUESTION. 3338 02:05:31,480 --> 02:05:33,080 THE QUESTION THAT I'M SEEING ON 3339 02:05:33,080 --> 02:05:35,880 LINE IS, WHY DOES IT SEEM LIKE 3340 02:05:35,880 --> 02:05:38,880 THERE ARE NO BLACK AND BROWN 3341 02:05:38,880 --> 02:05:40,320 PEOPLE WITH DOWN SYNDROME? 3342 02:05:40,320 --> 02:05:41,520 THAT'S THE QUESTION THAT PEOPLE 3343 02:05:41,520 --> 02:05:42,120 ARE ASKING ON LINE. 3344 02:05:42,120 --> 02:05:44,640 AND SO, TO SET THE STAGE A BIT, 3345 02:05:44,640 --> 02:05:47,120 AS WE ARE TALKING ABOUT DOWN 3346 02:05:47,120 --> 02:05:49,360 SYNDROME RESEARCH, REALLY 3347 02:05:49,360 --> 02:05:51,640 THROUGH THE VEIL OF DIVERSITY, 3348 02:05:51,640 --> 02:05:53,400 IT IS REALLY IMPORTANT FOR US TO 3349 02:05:53,400 --> 02:05:55,360 ACKNOWLEDGE THE SOCIAL IN 3350 02:05:55,360 --> 02:05:59,160 VISIBILITY OF BEING BIPO R AND 3351 02:05:59,160 --> 02:05:59,680 LIVING WITH DOWN SYNDROME. 3352 02:05:59,680 --> 02:06:02,040 WHAT I WANT US ASKING IS, IF THE 3353 02:06:02,040 --> 02:06:04,000 PUBLIC IS SOCIALIZED TO BELIEVE 3354 02:06:04,000 --> 02:06:05,480 THAT A CERTAIN GROUP DOESN'T 3355 02:06:05,480 --> 02:06:08,080 EXIST, THEN WHAT ARE THE LIVED 3356 02:06:08,080 --> 02:06:10,560 AND MATERIAL IMPACTS OF THAT 3357 02:06:10,560 --> 02:06:12,720 DEHUMANIZING AND OSTRACIZING 3358 02:06:12,720 --> 02:06:13,360 LANGUAGE? 3359 02:06:13,360 --> 02:06:15,400 AND HOW CAN THIS BETTER INFORM A 3360 02:06:15,400 --> 02:06:17,400 LOT OF THE DISCRIMINATION AND 3361 02:06:17,400 --> 02:06:17,960 DIFFERENT HEALTH DISPARITIES 3362 02:06:17,960 --> 02:06:20,160 THAT WE'RE SEEING IN THIS 3363 02:06:20,160 --> 02:06:23,160 COMMUNITY AND ITS IMPACTS ON 3364 02:06:23,160 --> 02:06:24,960 CLINICAL RESEARCH? 3365 02:06:24,960 --> 02:06:27,440 NEXT SLIDE. 3366 02:06:27,440 --> 02:06:29,480 SO I KNOW THIS AUDIENCE KNOWS A 3367 02:06:29,480 --> 02:06:30,760 LOT OF THE INFORMATION BUT WE 3368 02:06:30,760 --> 02:06:32,920 KNOW THAT BIPOC INDIVIDUALS 3369 02:06:32,920 --> 02:06:34,640 LIVING WITH DOWN SYNDROME FACE 3370 02:06:34,640 --> 02:06:35,840 HIGHER STIGMA. 3371 02:06:35,840 --> 02:06:38,880 THEY ARE OFTEN PERCEIVED AS 3372 02:06:38,880 --> 02:06:39,800 AGGRESSIVE, VILE AND HE WANT 3373 02:06:39,800 --> 02:06:41,360 MISBEHAVE IN THE EXPERIENCE 3374 02:06:41,360 --> 02:06:44,280 HIGHER RATES OF BIAS AS WELL AS 3375 02:06:44,280 --> 02:06:44,680 DISCRIMINATION. 3376 02:06:44,680 --> 02:06:47,560 AND WE THINK ABOUT THE RACIAL 3377 02:06:47,560 --> 02:06:51,440 DISPARITIES AND HOW THAT IMPACTS 3378 02:06:51,440 --> 02:06:53,120 LIFE EXPECTANCY THAT DIFFERENCE 3379 02:06:53,120 --> 02:06:57,600 REALLY COULDN'T BE STARKER. 3380 02:06:57,600 --> 02:06:57,920 NEXT SLIDE. 3381 02:06:57,920 --> 02:07:01,200 I'M GOING TO TURN THINGS OVER TO 3382 02:07:01,200 --> 02:07:01,800 DEVAN WHO WILL EXPLORE THIS IN 3383 02:07:01,800 --> 02:07:04,120 MORE DETAIL. 3384 02:07:04,120 --> 02:07:04,680 >> THANK YOU. 3385 02:07:04,680 --> 02:07:07,240 IN THE WORK WE DO, WE HAVE THE 3386 02:07:07,240 --> 02:07:09,360 PRIVILEGE TO ENGAGE COMMUNITY 3387 02:07:09,360 --> 02:07:10,960 MEMBERS AND HEAR FROM THEM THE 3388 02:07:10,960 --> 02:07:12,480 DIFFERENT BARRIERS AND 3389 02:07:12,480 --> 02:07:15,000 CHALLENGES THAT THEY SEE WHEN IT 3390 02:07:15,000 --> 02:07:16,440 COMES TO PARTICIPATING IN 3391 02:07:16,440 --> 02:07:16,680 RESEARCH. 3392 02:07:16,680 --> 02:07:17,960 SO ON THE LEFT YOU SEE THAT IS 3393 02:07:17,960 --> 02:07:21,400 THERE A CONDENSED LIST OF COMMON 3394 02:07:21,400 --> 02:07:23,240 BARRIERS TO PARTICIPATION IN 3395 02:07:23,240 --> 02:07:24,800 DOWN SYNDROME RESEARCH. 3396 02:07:24,800 --> 02:07:27,960 BUT ON THE RIGHT, WE HAVE DIRECT 3397 02:07:27,960 --> 02:07:29,360 QUOTE AND FEEDBACK FROM PARENTS 3398 02:07:29,360 --> 02:07:30,960 OF CHILDREN WHO HAVE BEEN 3399 02:07:30,960 --> 02:07:32,560 DIAGNOSED WITH DEVELOPMENTAL 3400 02:07:32,560 --> 02:07:34,400 DISABILITY OR WITH A GENETIC 3401 02:07:34,400 --> 02:07:34,680 DISORDER. 3402 02:07:34,680 --> 02:07:35,640 IT'S INTERESTING TO SEE THAT 3403 02:07:35,640 --> 02:07:38,680 THEY ARE VERY SPECIFIC FEEDBACK 3404 02:07:38,680 --> 02:07:41,320 CORRELATES VERY WELL WITH THE 3405 02:07:41,320 --> 02:07:43,600 BARRIERS THAT WE SEE. 3406 02:07:43,600 --> 02:07:46,440 SO FOR EXAMPLE, THE VERY FIRST 3407 02:07:46,440 --> 02:07:46,600 ONE. 3408 02:07:46,600 --> 02:07:56,800 [ READING ] 3409 02:07:57,920 --> 02:08:03,200 THAT VERY NICELY GOES WITH THE 3410 02:08:03,200 --> 02:08:04,760 CHALLENGE OF LONG TERM 3411 02:08:04,760 --> 02:08:06,720 IMPLICATIONS AND SAFETY OF THEIR 3412 02:08:06,720 --> 02:08:07,040 CHILD. 3413 02:08:07,040 --> 02:08:07,520 THE SECOND ONE. 3414 02:08:07,520 --> 02:08:17,720 [ READING ] 3415 02:08:22,600 --> 02:08:24,280 VERY MUCH GOES IN LINE WITH WHAT 3416 02:08:24,280 --> 02:08:26,520 LIMITED INFORMATION EXISTS ABOUT 3417 02:08:26,520 --> 02:08:29,360 CLINICAL TRIALS AND ACCESS TO 3418 02:08:29,360 --> 02:08:30,440 CLINICAL TRIALS. 3419 02:08:30,440 --> 02:08:30,720 THIRD: 3420 02:08:30,720 --> 02:08:40,200 [ READING ] 3421 02:08:40,200 --> 02:08:41,400 VERY MUCH UP IN LINE WITH THE 3422 02:08:41,400 --> 02:08:44,240 LOGISTICAL CHALLENGES THAT 3423 02:08:44,240 --> 02:08:44,800 PARTICIPANTS OFTEN FACE. 3424 02:08:44,800 --> 02:08:51,120 AND LASTLY: 3425 02:08:51,120 --> 02:08:56,080 [ READING ] 3426 02:08:56,080 --> 02:08:57,480 VERY MUCH GOING IN LINE WITH THE 3427 02:08:57,480 --> 02:09:00,720 MISTRUST AND IMPLICIT BIAS THAT 3428 02:09:00,720 --> 02:09:01,520 OUR PARTICIPANTS, COMMUNITY 3429 02:09:01,520 --> 02:09:03,160 MEMBERS, SEE AND ARE 3430 02:09:03,160 --> 02:09:04,120 EXPERIENCING. 3431 02:09:04,120 --> 02:09:05,120 SO BEING MINDFUL. 3432 02:09:05,120 --> 02:09:07,680 THESE FOUR ARE JUST A VERY SMALL 3433 02:09:07,680 --> 02:09:09,760 SNAPSHOT OF VERY SPECIFIC 3434 02:09:09,760 --> 02:09:11,360 FEEDBACK WE RECEIVED DIRECTLY 3435 02:09:11,360 --> 02:09:12,240 FROM INDIVIDUALS ON THEIR 3436 02:09:12,240 --> 02:09:14,520 PERSPECTIVES OF RECRUITMENT AND 3437 02:09:14,520 --> 02:09:16,240 RETENTION AT DIFFERENT TRIALS. 3438 02:09:16,240 --> 02:09:18,360 NEXT SLIDE. 3439 02:09:18,360 --> 02:09:19,800 >> JUST TO REMIND YOU FROM THE 3440 02:09:19,800 --> 02:09:21,360 INTERPRETERS TO GO A LITTLE BIT 3441 02:09:21,360 --> 02:09:21,600 SLOWER. 3442 02:09:21,600 --> 02:09:22,480 WE ARE TRYING TO CATCH-UP. 3443 02:09:22,480 --> 02:09:23,640 THANK YOU VERY MUCH. 3444 02:09:23,640 --> 02:09:24,040 >> ABSOLUTELY. 3445 02:09:24,040 --> 02:09:25,360 THANK YOU VERY MUCH. 3446 02:09:25,360 --> 02:09:27,680 MY APOLOGIES. 3447 02:09:27,680 --> 02:09:29,360 >> NO WORRIES. 3448 02:09:29,360 --> 02:09:33,920 >> SO RECOMMENDATIONS TO 3449 02:09:33,920 --> 02:09:34,200 DIVERSITY. 3450 02:09:34,200 --> 02:09:36,440 SO A QUESTION S ARE WE UNPACKING 3451 02:09:36,440 --> 02:09:39,320 OUR BIASES FROM AN ACADEMIC 3452 02:09:39,320 --> 02:09:40,040 PERSPECTIVE? 3453 02:09:40,040 --> 02:09:40,520 RESEARCH PERSPECTIVE? 3454 02:09:40,520 --> 02:09:43,360 ARE WE AWARE OF HOW SYSTEMIC 3455 02:09:43,360 --> 02:09:46,520 RACISM IMPACTS HEALTH 3456 02:09:46,520 --> 02:09:48,120 INTECHITIES AND ARE WE WORKING 3457 02:09:48,120 --> 02:09:48,800 TO DEVELOP PROJECTS IN 3458 02:09:48,800 --> 02:09:50,120 ENVIRONMENTS THAT ARE PERSON 3459 02:09:50,120 --> 02:09:52,520 CENTERED AND FOSTER TRUST. 3460 02:09:52,520 --> 02:09:55,920 SO, ONE RESOURCE THAT WE HAVE IS 3461 02:09:55,920 --> 02:09:57,360 THE FASTER TOGETHER, ENHANCING 3462 02:09:57,360 --> 02:09:59,480 THE RECRUITMENT OF MINORITIES IN 3463 02:09:59,480 --> 02:10:00,080 CLINICAL TRIALS, WHICH WE WILL 3464 02:10:00,080 --> 02:10:05,680 BE UPDATING TO BE MORE AWARE OF 3465 02:10:05,680 --> 02:10:08,720 LANGUAGE CHANGES IN EVOLUTION. 3466 02:10:08,720 --> 02:10:11,120 BUT IN THIS TRAINING THAT IS 3467 02:10:11,120 --> 02:10:12,920 PROVIDED FOR CLINICAL 3468 02:10:12,920 --> 02:10:16,160 RESEARCHERS AND PROJECT TEAMS, 3469 02:10:16,160 --> 02:10:16,880 THERE ARE 8 MODIUMS. 3470 02:10:16,880 --> 02:10:19,680 AND THERE ARE 8 MODULES AND A 3471 02:10:19,680 --> 02:10:21,200 LITTLE BIT OF BACKGROUND ABOUT 3472 02:10:21,200 --> 02:10:21,400 THEM. 3473 02:10:21,400 --> 02:10:22,080 THE FIRST IS PILOTING THE 3474 02:10:22,080 --> 02:10:24,640 IMPORTANCE OF INTENTIONAL 3475 02:10:24,640 --> 02:10:26,400 INCLUSION OF RACIAL AND ETHNIC 3476 02:10:26,400 --> 02:10:28,840 DIVERSITY IN TRIALS AND HOW LOW 3477 02:10:28,840 --> 02:10:30,080 PARTICIPATION OF MINORITIES IN 3478 02:10:30,080 --> 02:10:32,480 RESEARCH EFFECTS HEALTH CARE. 3479 02:10:32,480 --> 02:10:33,680 THE SECOND IS ABOUT REFLECTING 3480 02:10:33,680 --> 02:10:36,720 ON OUR BIASES AND INTENTION 3481 02:10:36,720 --> 02:10:37,440 ALLEN GAUGEMENT WITHIN THE 3482 02:10:37,440 --> 02:10:43,320 COMMUNITY AND BUILDING 3483 02:10:43,320 --> 02:10:44,200 PARTNERSHIPS. 3484 02:10:44,200 --> 02:10:47,440 3 AND 4 HOW TO AWARE DIFFERENT 3485 02:10:47,440 --> 02:10:48,720 LEARNING STYLES AND CULTURAL 3486 02:10:48,720 --> 02:10:52,760 NUANCES TO IMPROVE EDUCATION. 3487 02:10:52,760 --> 02:10:54,560 THE 5 IS VERY SIMILAR TO THE 3488 02:10:54,560 --> 02:10:56,520 SECOND MODULE, BUILDING 3489 02:10:56,520 --> 02:10:58,520 PARTNERSHIPS SPECIFICALLY WITH 3490 02:10:58,520 --> 02:11:00,640 COMMUNITY HEALTH CARE PROVIDERS 3491 02:11:00,640 --> 02:11:02,440 TO ADDRESS THE WARRANTED 3492 02:11:02,440 --> 02:11:03,800 MISTRUST AND BEGIN TO BUILD 3493 02:11:03,800 --> 02:11:06,080 THOSE RELATIONSHIPS WITH 3494 02:11:06,080 --> 02:11:07,600 COMMUNITY MEMBERS. 3495 02:11:07,600 --> 02:11:10,560 AND AS WE KNOW, INFORMED CONSENT 3496 02:11:10,560 --> 02:11:11,200 IS INCREDIBLY IMPORTANT. 3497 02:11:11,200 --> 02:11:13,640 AND SO MODULE 6 FOCUSING ON WAYS 3498 02:11:13,640 --> 02:11:15,880 TO FACILITATE THAT EDUCATIONAL 3499 02:11:15,880 --> 02:11:18,720 PIECE BEFORE CONSENTING AND 7 3500 02:11:18,720 --> 02:11:20,000 SHARES BEST PRACTICES TO ENSURE 3501 02:11:20,000 --> 02:11:22,880 THAT THE PROCESS IS ACCESSIBLE 3502 02:11:22,880 --> 02:11:24,160 AND APPROPRIATE AND THAT COULD 3503 02:11:24,160 --> 02:11:26,040 BE ANYTHING FROM LANGUAGE, 3504 02:11:26,040 --> 02:11:27,600 LITERACY LEVEL, ACCESS, 3505 02:11:27,600 --> 02:11:27,920 ET CETERA. 3506 02:11:27,920 --> 02:11:29,920 AND THEN THE FINAL MODULE IS 3507 02:11:29,920 --> 02:11:32,240 VERY SPECIFIC TO ADDRESSING 3508 02:11:32,240 --> 02:11:33,000 RETENTION CHALLENGES AND 3509 02:11:33,000 --> 02:11:34,920 DIFFERENT APPROACHES AND BEST 3510 02:11:34,920 --> 02:11:37,440 PRACTICES TO ADDRESS THOSE 3511 02:11:37,440 --> 02:11:39,880 CHALLENGES. 3512 02:11:39,880 --> 02:11:45,080 NEXT SLIDE. 3513 02:11:45,080 --> 02:11:46,520 SO, THINKING THROUGH THE 3514 02:11:46,520 --> 02:11:47,400 RESEARCH ENVIRONMENT AND ONE 3515 02:11:47,400 --> 02:11:52,640 THING TO ASK OURSELVES IS, IS IT 3516 02:11:52,640 --> 02:11:52,920 WELCOMING? 3517 02:11:52,920 --> 02:11:53,560 BECAUSE IMPROVING DIVERSITY IN 3518 02:11:53,560 --> 02:11:54,720 RESEARCH ISN'T JUST THE 3519 02:11:54,720 --> 02:11:55,560 DIVERSITY OF THE PATIENT AND THE 3520 02:11:55,560 --> 02:11:57,880 TRIAL PARTICIPANTS. 3521 02:11:57,880 --> 02:12:00,160 ONE WAY TO IMPROVE DIVERSITY IN 3522 02:12:00,160 --> 02:12:01,840 RESEARCH IN CLINICAL TRIALS IS 3523 02:12:01,840 --> 02:12:04,400 TO ENSURE THAT WE ARE INTENTION 3524 02:12:04,400 --> 02:12:06,720 ALLEY ADDRESSING DIVERSITY AND 3525 02:12:06,720 --> 02:12:08,200 INCLUSION INTERNALLY AND IF WE 3526 02:12:08,200 --> 02:12:08,640 ARE HOLDING OURSELVES 3527 02:12:08,640 --> 02:12:09,360 ACCOUNTABLE. 3528 02:12:09,360 --> 02:12:12,440 SO, HOW DIVERSE IS YOUR TEAM? 3529 02:12:12,440 --> 02:12:13,440 WHAT STRATEGIES ADDRESS 3530 02:12:13,440 --> 02:12:15,360 INCLUSION AND DIVERSITY OF 3531 02:12:15,360 --> 02:12:17,520 FACULTY AND STAFF AND EVEN 3532 02:12:17,520 --> 02:12:18,720 SUPPORT STAFF HAVE BEEN 3533 02:12:18,720 --> 02:12:19,040 IMPLEMENTED? 3534 02:12:19,040 --> 02:12:24,480 ARE THERE PLANS TO ADDRESS THESE 3535 02:12:24,480 --> 02:12:24,760 INEQUITIES? 3536 02:12:24,760 --> 02:12:25,400 ADDITIONALLY, ARE THERE PEOPLE 3537 02:12:25,400 --> 02:12:27,760 ON STAFF OR EVEN THE BOARD WHO 3538 02:12:27,760 --> 02:12:28,480 LOOK LIKE THE PEOPLE YOU'RE 3539 02:12:28,480 --> 02:12:29,720 WANTING TO ENGAGE AND RECRUIT? 3540 02:12:29,720 --> 02:12:31,560 ARE THERE PEOPLE WHO HAVE 3541 02:12:31,560 --> 02:12:34,080 SIMILAR LIVED EXPERIENCES? 3542 02:12:34,080 --> 02:12:34,600 SPEAK THE SAME LANGUAGE? 3543 02:12:34,600 --> 02:12:35,400 EVEN THE SAME DIALECT? 3544 02:12:35,400 --> 02:12:37,080 OR EVEN LIVE IN THE SAME AREAS 3545 02:12:37,080 --> 02:12:38,400 AS THE COMMUNITIES YOU'RE HOPING 3546 02:12:38,400 --> 02:12:41,360 TO ENGAGE? 3547 02:12:41,360 --> 02:12:44,440 AND SO, WHEN EXPANDING ONE'S 3548 02:12:44,440 --> 02:12:46,160 TEAM, THINKING THROUGH 3549 02:12:46,160 --> 02:12:47,600 REQUIREMENTS AND GOING THROUGH 3550 02:12:47,600 --> 02:12:49,280 THE HIRING PROCESS, WOULD ANY OF 3551 02:12:49,280 --> 02:12:52,720 THE REQUIREMENTS YOU'RE LOOKING 3552 02:12:52,720 --> 02:12:53,320 OR EXPECTING, DOES THAT LIMIT 3553 02:12:53,320 --> 02:12:56,400 THE POOL OR IS IT IN ANY WAY 3554 02:12:56,400 --> 02:12:56,720 EXCLUSIONARY? 3555 02:12:56,720 --> 02:13:00,600 ARE THERE HIRING COMMITTEES 3556 02:13:00,600 --> 02:13:00,840 DIVERSE? 3557 02:13:00,840 --> 02:13:03,800 INTEGRATING DIVERSITY EQUITY AND 3558 02:13:03,800 --> 02:13:04,360 INCLUSION SPECIALISTS? 3559 02:13:04,360 --> 02:13:06,520 OR HR IN A DIVERSE WAY? 3560 02:13:06,520 --> 02:13:08,480 SO AGAIN, PRIORITIZING AND 3561 02:13:08,480 --> 02:13:11,600 HIRING CULTURALLY STAFF AND 3562 02:13:11,600 --> 02:13:14,640 BEING MINDFUL OF THESE HIRING 3563 02:13:14,640 --> 02:13:17,440 PRACTICES IS A STEP TO SHOW MY 3564 02:13:17,440 --> 02:13:18,440 NOR TIDES COMMUNITIES THEY ARE 3565 02:13:18,440 --> 02:13:22,400 SEEN AND NOT JUST A NUMBER. 3566 02:13:22,400 --> 02:13:28,160 NEXT SLIDE. 3567 02:13:28,160 --> 02:13:29,440 THIS IS SIMILAR TO WHAT OTHERS 3568 02:13:29,440 --> 02:13:31,440 HAVE STATED. 3569 02:13:31,440 --> 02:13:33,360 STUDY DESIGN AND REDUCING THE 3570 02:13:33,360 --> 02:13:35,000 BURDEN ON OUR PARTICIPANTS. 3571 02:13:35,000 --> 02:13:36,800 SO MANY OF US IN RESEARCH AND 3572 02:13:36,800 --> 02:13:39,800 ACADEMIA HAVE THE PRIVILEGE AND 3573 02:13:39,800 --> 02:13:42,720 ARE PRIVILEGED TO WORK A 9-5 OR 3574 02:13:42,720 --> 02:13:45,120 8-4 MONDAY-FRIDAYS BUT THAT'S 3575 02:13:45,120 --> 02:13:45,680 NOT EVERYONE'S REALITY. 3576 02:13:45,680 --> 02:13:49,240 ARE WE EXPANDING OUR 3577 02:13:49,240 --> 02:13:49,600 AVAILABILITY? 3578 02:13:49,600 --> 02:13:50,480 INTENTIONY ENSURING THERE ARE 3579 02:13:50,480 --> 02:13:51,480 WEEKEND AVAILABILITY, EVEN 3580 02:13:51,480 --> 02:13:51,960 AVAILABILITY? 3581 02:13:51,960 --> 02:13:53,640 ANOTHER WAY TO REDUCE BURDEN AND 3582 02:13:53,640 --> 02:13:56,640 BARRIERS IS TO OFFER OR UTILIZE 3583 02:13:56,640 --> 02:13:57,280 A TELEHEALTH OPTION BECAUSE 3584 02:13:57,280 --> 02:13:59,440 PEOPLE CAN'T ALWAYS COME INTO AN 3585 02:13:59,440 --> 02:14:00,720 OFFICE OR THEY HAVE OTHER 3586 02:14:00,720 --> 02:14:02,440 OBLIGATIONS AND PRIORITIES. 3587 02:14:02,440 --> 02:14:03,720 IF TELEHEALTH ISN'T AN OPTION, 3588 02:14:03,720 --> 02:14:05,440 HOW ARE WE ENSURING PARTICIPANTS 3589 02:14:05,440 --> 02:14:07,440 CAN MAKE IT INTO A CLINIC OR TO 3590 02:14:07,440 --> 02:14:09,040 YOUR SPACE? 3591 02:14:09,040 --> 02:14:11,360 ARE THERE BUS VOUCHERS? 3592 02:14:11,360 --> 02:14:12,280 PARKING VOUCHERS? 3593 02:14:12,280 --> 02:14:14,240 GAS CARDS? 3594 02:14:14,240 --> 02:14:16,440 ONE WAY TO ADDRESS ALL OF THESE 3595 02:14:16,440 --> 02:14:18,400 IS HAVING LOCATIONS RIGHT IN THE 3596 02:14:18,400 --> 02:14:19,000 HEART OF THE COMMUNITIES THAT 3597 02:14:19,000 --> 02:14:21,000 YOU'RE WISHING TO CONNECT WITH. 3598 02:14:21,000 --> 02:14:24,760 SO IN THIS SPACE, SLP CLINICS, 3599 02:14:24,760 --> 02:14:26,320 OT CLINICS, COLLABORATING WITH 3600 02:14:26,320 --> 02:14:27,800 COMMUNITY PROGRAMS AND 3601 02:14:27,800 --> 02:14:28,600 ORGANIZATIONS, A TRUSTED SPACE 3602 02:14:28,600 --> 02:14:31,680 FOR FAMILIES. 3603 02:14:31,680 --> 02:14:32,320 AND THEN ANOTHER CONSIDERATIONS 3604 02:14:32,320 --> 02:14:34,720 TO REDUCE BARRIERS IS SENSORY 3605 02:14:34,720 --> 02:14:35,600 CONSIDERATIONS. 3606 02:14:35,600 --> 02:14:38,080 HOW BRIGHT AND DARK ARE YOUR 3607 02:14:38,080 --> 02:14:38,280 ROOMS? 3608 02:14:38,280 --> 02:14:39,880 ANYTHING WITH A STRONG FRAGRANCE 3609 02:14:39,880 --> 02:14:41,200 THAT COULD BE OVER BEARING? 3610 02:14:41,200 --> 02:14:43,600 DO YOU HAVE WEIGHTED BLANK NETS 3611 02:14:43,600 --> 02:14:44,200 ARE THERE SNACKS AVAILABLE NOT 3612 02:14:44,200 --> 02:14:45,800 JUST FOR PARTICIPANTS BUT FOR 3613 02:14:45,800 --> 02:14:46,400 THEIR FAMILIES AND OTHER FOLKS 3614 02:14:46,400 --> 02:14:49,440 THAT ARE THERE TO HELP THE 3615 02:14:49,440 --> 02:14:50,480 RESEARCH PROCESS AND HELP TO 3616 02:14:50,480 --> 02:14:52,440 ENSURE THAT THEIR FAMILIES 3617 02:14:52,440 --> 02:14:57,360 MEMBERS AND LOVED ONES HAVE ALL 3618 02:14:57,360 --> 02:14:59,560 THEY NEED? 3619 02:14:59,560 --> 02:15:06,720 NEXT SLIDE. 3620 02:15:06,720 --> 02:15:07,920 >> THANK YOU, DEVON. 3621 02:15:07,920 --> 02:15:09,680 VERY QUICKLY I'M GOING TO TOUCH 3622 02:15:09,680 --> 02:15:12,360 UPON A MODEL WE CREATED 12 YEARS 3623 02:15:12,360 --> 02:15:13,760 AGO CALLED COMMUNITY ENGAGEMENT 3624 02:15:13,760 --> 02:15:14,000 STUDIOS. 3625 02:15:14,000 --> 02:15:14,880 IT'S POSSIBLE THAT SEVERAL FOLKS 3626 02:15:14,880 --> 02:15:16,080 ON THE CALL TODAY ARE FAMILIAR 3627 02:15:16,080 --> 02:15:18,760 WITH THIS MODEL. 3628 02:15:18,760 --> 02:15:20,960 COMMUNITY ENGAGEMENT STUDIOS ARE 3629 02:15:20,960 --> 02:15:22,840 A ONE-TIME CONSTITUTIVE MEETING 3630 02:15:22,840 --> 02:15:23,440 WITH A RESEARCH TEAM'S 3631 02:15:23,440 --> 02:15:24,280 POPULATION OF INTEREST. 3632 02:15:24,280 --> 02:15:27,400 SO THIS IS A MEETING THAT TAKES 3633 02:15:27,400 --> 02:15:28,040 MAKES BETWEEN THE RESEARCH TEAM 3634 02:15:28,040 --> 02:15:29,160 AND A COMMUNITY. 3635 02:15:29,160 --> 02:15:31,000 IT'S NOT MEANT TO REPLACE THE 3636 02:15:31,000 --> 02:15:33,160 MANY OTHER IMPORTANT ENGAGEMENT 3637 02:15:33,160 --> 02:15:33,680 STRATEGIES THAT HAVE BEEN 3638 02:15:33,680 --> 02:15:34,080 MENTIONED TODAY. 3639 02:15:34,080 --> 02:15:35,680 IT'S MEANT TO SIMPLY BE A 3640 02:15:35,680 --> 02:15:37,360 SUPPLEMENT OR EVEN A TOOL FOR 3641 02:15:37,360 --> 02:15:39,240 STARTING A TEAM'S ENGAGEMENT 3642 02:15:39,240 --> 02:15:39,760 PROCESS. 3643 02:15:39,760 --> 02:15:41,240 I LOVE THAT DANNY MENTIONED THE 3644 02:15:41,240 --> 02:15:43,640 IMPORTANCE OF LISTENING TO 3645 02:15:43,640 --> 02:15:44,280 STORIES BECAUSE THAT IS EXACTLY 3646 02:15:44,280 --> 02:15:46,680 THE SPACE THAT COMMUNITY 3647 02:15:46,680 --> 02:15:47,320 ENGAGEMENT STUDIOS ARE TRYING TO 3648 02:15:47,320 --> 02:15:48,720 CREATE FOR FAMILIES AND 3649 02:15:48,720 --> 02:15:51,400 ADVOCATES AND STUDY 3650 02:15:51,400 --> 02:15:53,360 PARTICIPANTS. 3651 02:15:53,360 --> 02:15:54,520 NEXT SLIDE, PLEASE. 3652 02:15:54,520 --> 02:15:56,720 SO WHAT I DID IS PUT TOGETHER A 3653 02:15:56,720 --> 02:15:58,400 SLIDE THAT REPRESENTS AN 3654 02:15:58,400 --> 02:16:00,320 AGGREGATE OF COMMUNITY 3655 02:16:00,320 --> 02:16:00,880 ENGAGEMENT STUDIOS CONDUCTED 3656 02:16:00,880 --> 02:16:02,120 WITH FAMILIES AND CAREGIVERS. 3657 02:16:02,120 --> 02:16:04,360 THE FOCUS INCLUDED MULTIPLE 3658 02:16:04,360 --> 02:16:06,720 AREAS AS YOU CAN SEE, 3659 02:16:06,720 --> 02:16:08,520 IMPLEMENTATION, BARRIERS, 3660 02:16:08,520 --> 02:16:10,280 MESSAGING, MATERIALS, YOU 3661 02:16:10,280 --> 02:16:12,520 CANNULATE LIES THIS MODEL TO 3662 02:16:12,520 --> 02:16:13,960 HAVE CONVERSATIONS AROUND A WIDE 3663 02:16:13,960 --> 02:16:15,880 RANGE OF ISSUES THAT MIGHT 3664 02:16:15,880 --> 02:16:17,000 IMPACT A STUDY. 3665 02:16:17,000 --> 02:16:19,120 SO THE FIRST TWO KEY 3666 02:16:19,120 --> 02:16:21,360 RECOMMENDATIONS HONED IN ON 3667 02:16:21,360 --> 02:16:22,320 TAKING INTO CONSIDERATION THE 3668 02:16:22,320 --> 02:16:23,920 MANY CHALLENGES THAT EXIST OF 3669 02:16:23,920 --> 02:16:25,360 PARTICIPATING IN A STUDY. 3670 02:16:25,360 --> 02:16:27,280 AND IT ENCOURAGES RESEARCHERS TO 3671 02:16:27,280 --> 02:16:29,280 CREATE AN ENVIRONMENT THAT MAKES 3672 02:16:29,280 --> 02:16:30,600 PARTICIPATION AS CONVENIENT AND 3673 02:16:30,600 --> 02:16:31,880 AS EASY AS POSSIBLE. 3674 02:16:31,880 --> 02:16:34,920 SO TALKING ABOUT HAVING 1-2 3675 02:16:34,920 --> 02:16:36,720 EVENING A WEEK. 3676 02:16:36,720 --> 02:16:38,040 HAVING A WEEKEND AVAILABLE. 3677 02:16:38,040 --> 02:16:42,120 BUT ALSO BEING MINDFUL THAT 3678 02:16:42,120 --> 02:16:42,680 REALLY LENGTHY VISITS CAN BE 3679 02:16:42,680 --> 02:16:44,480 DIFFICULT FOR BOTH THE FAMILIES 3680 02:16:44,480 --> 02:16:44,880 AS WELL AS THE STUDY 3681 02:16:44,880 --> 02:16:45,240 PARTICIPANTS. 3682 02:16:45,240 --> 02:16:46,520 WHAT CAN YOU BREAK INTO TWO 3683 02:16:46,520 --> 02:16:46,880 PIECES? 3684 02:16:46,880 --> 02:16:48,720 CAN A SEGMENT OF THE STUDY BE 3685 02:16:48,720 --> 02:16:49,360 IMPLEMENTED ON LINE? 3686 02:16:49,360 --> 02:16:51,880 CAN IT BE IMPLEMENTED IN A 3687 02:16:51,880 --> 02:16:52,560 DIFFERENT SPACE THAT MAYBE ISN'T 3688 02:16:52,560 --> 02:16:53,720 THAT CLINICAL SPACE BUT WHERE 3689 02:16:53,720 --> 02:16:56,600 THE FAMILY AND PARTICIPANT MIGHT 3690 02:16:56,600 --> 02:16:57,360 ALREADY BE? 3691 02:16:57,360 --> 02:16:59,800 AND THEN THE SECOND STEP 3692 02:16:59,800 --> 02:17:01,480 HIGHLIGHTS THE NEED FOR RESEARCH 3693 02:17:01,480 --> 02:17:03,240 TEAMS TO DEVELOP REALLY STRONG 3694 02:17:03,240 --> 02:17:03,840 RELATIONSHIPS WITH COMMUNITY. 3695 02:17:03,840 --> 02:17:05,360 I LOVE THAT ACROSS ALL THE 3696 02:17:05,360 --> 02:17:07,240 PRESENTATIONS WE ARE PICKING 3697 02:17:07,240 --> 02:17:08,760 OCCUPY THIS THEME TODAY AND THIS 3698 02:17:08,760 --> 02:17:11,240 HERE IS SHOWING US THAT OUR 3699 02:17:11,240 --> 02:17:12,360 FAMILIES AND OUR COMMUNITIES ARE 3700 02:17:12,360 --> 02:17:14,480 SAYING, YES, ALL THESE THINGS 3701 02:17:14,480 --> 02:17:15,760 YOU'RE HEARING FROM YOUR 3702 02:17:15,760 --> 02:17:16,480 COLLEAGUES ARE REALLY IMPORTANT 3703 02:17:16,480 --> 02:17:16,960 TO US. 3704 02:17:16,960 --> 02:17:18,600 SO THE IDEA HERE IS THAT BUILD 3705 02:17:18,600 --> 02:17:21,920 THE STRONG RELATIONSHIPS. 3706 02:17:21,920 --> 02:17:23,560 THAT INCLUDES GRASSROOTS, 3707 02:17:23,560 --> 02:17:25,480 COMMUNITY-BASED ORGANIZATIONS, 3708 02:17:25,480 --> 02:17:26,120 CAREGIVERS AND INDIVIDUALS WHO 3709 02:17:26,120 --> 02:17:28,760 ARE ADVOCATES AND LEADERSES IN 3710 02:17:28,760 --> 02:17:29,200 THIS SPACE. 3711 02:17:29,200 --> 02:17:30,760 ALSO IMPORTANT TO INCLUDE 3712 02:17:30,760 --> 02:17:32,680 TRUSTED COMMUNITY-BASED 3713 02:17:32,680 --> 02:17:32,960 PROVIDERS. 3714 02:17:32,960 --> 02:17:35,000 SO OTHER POTENTIAL PARTNERS THAT 3715 02:17:35,000 --> 02:17:38,280 ARE OFTEN OVERLOOKED ARE OTs 3716 02:17:38,280 --> 02:17:42,400 AND PTs, SOCIAL WORKERS, 3717 02:17:42,400 --> 02:17:43,040 SPECIAL EDUCATION PROFESSIONALS, 3718 02:17:43,040 --> 02:17:44,120 QUITE OFTEN WHEN WE GO OUT AND 3719 02:17:44,120 --> 02:17:46,520 WORK WITH THESE GROUPS OF 3720 02:17:46,520 --> 02:17:48,040 INDIVIDUALS TO PULL THEM IN TO 3721 02:17:48,040 --> 02:17:49,560 COMMUNITY ENGAGEMENT STUDIOS, 3722 02:17:49,560 --> 02:17:50,640 THEY OFTEN SAY THEY ARE NEVER 3723 02:17:50,640 --> 02:17:54,680 REALLY ASKED TO PARTICIPATE AS 3724 02:17:54,680 --> 02:17:56,520 COLLABORATING PARTNERS OR TO 3725 02:17:56,520 --> 02:17:57,640 PARTICIPATE IN HELPING TO DO 3726 02:17:57,640 --> 02:17:59,360 OUTREACH, MEANINGFUL OUTREACH SO 3727 02:17:59,360 --> 02:18:01,360 THE FOLKS THAT THEY ARE 3728 02:18:01,360 --> 02:18:03,080 PROVIDING SERVICES TO ARE AWARE 3729 02:18:03,080 --> 02:18:04,360 THAT STUDIES EXIST AND HOW THEY 3730 02:18:04,360 --> 02:18:07,200 CAN BE INCLUDED IN THEM. 3731 02:18:07,200 --> 02:18:08,920 ALL OF THESE PARTNERSHIPS CAN 3732 02:18:08,920 --> 02:18:11,880 HELP TO INCREASE THE RESEARCH 3733 02:18:11,880 --> 02:18:12,480 TEAM'S SOCIAL CONNECTIVITY AND 3734 02:18:12,480 --> 02:18:13,600 ALL OF THEM CAN INCREASE THE 3735 02:18:13,600 --> 02:18:16,480 ABILITY TO REACH A MORE DIVERSE 3736 02:18:16,480 --> 02:18:17,040 AUDIENCE. 3737 02:18:17,040 --> 02:18:18,640 THE LAST RECOMMENDATION IS ONE 3738 02:18:18,640 --> 02:18:19,840 THAT WE HEAR FROM A LARGE 3739 02:18:19,840 --> 02:18:22,320 MAJORITY OF OUR COMMUNITY 3740 02:18:22,320 --> 02:18:23,200 EXPERTS ACROSS ALL DEMOGRAPHICS 3741 02:18:23,200 --> 02:18:25,360 AND IT'S THAT IT IS TIME TO STEP 3742 02:18:25,360 --> 02:18:29,080 INTO 2022 AND EMBRACE 3743 02:18:29,080 --> 02:18:29,480 TECHNOLOGY. 3744 02:18:29,480 --> 02:18:32,200 THAT DOES NOT NECESSARILY MEAN 3745 02:18:32,200 --> 02:18:32,960 THAT YOUR TEAM HAS TO GO OUT NOW 3746 02:18:32,960 --> 02:18:35,160 AND BUILD A REALLY STRONG SOCIAL 3747 02:18:35,160 --> 02:18:36,320 MEDIA PRESENCE. 3748 02:18:36,320 --> 02:18:38,640 YOU CAN COLLABORATE WITH THE 3749 02:18:38,640 --> 02:18:39,800 GROUPS THAT HAVE ALREADY 3750 02:18:39,800 --> 02:18:42,760 MENTIONED ABOVE TO PUSH OUT 3751 02:18:42,760 --> 02:18:45,680 INFORMATION, TO PUSH OUT 3752 02:18:45,680 --> 02:18:46,480 EDUCATION, TO PROVIDE 3753 02:18:46,480 --> 02:18:47,400 OPPORTUNITIES SO IF A GROUP THAT 3754 02:18:47,400 --> 02:18:50,640 YOU ARE COLLABORATING WITH HAS A 3755 02:18:50,640 --> 02:18:51,880 STRONG SOCIAL MEDIA PRESENCE AND 3756 02:18:51,880 --> 02:18:54,720 YOU CAN SPARE 30 MINUTES OF YOUR 3757 02:18:54,720 --> 02:18:57,360 DAY TO PROVIDE AN ONLINE FORUM 3758 02:18:57,360 --> 02:18:59,640 TO MAYBE DISCUSS IN LAY TERMS 3759 02:18:59,640 --> 02:19:02,840 NEW RESEARCH FINDINGS, NEW BEST 3760 02:19:02,840 --> 02:19:03,720 PRACTICES. 3761 02:19:03,720 --> 02:19:05,200 SOME DOS AND DON'T IN A CERTAIN 3762 02:19:05,200 --> 02:19:06,240 SPACE FOR A CERTAIN GROUP. 3763 02:19:06,240 --> 02:19:08,080 THESE ARE THINGS THAT ARE REALLY 3764 02:19:08,080 --> 02:19:10,400 WHAT I REFER TO AS LOW-HANGING 3765 02:19:10,400 --> 02:19:11,400 FRUIT FOR YOUR ABILITY TO GIVE 3766 02:19:11,400 --> 02:19:13,360 BACK TO A COMMUNITY THAT YOU ARE 3767 02:19:13,360 --> 02:19:17,360 TRYING TO CREATE A STRONG 3768 02:19:17,360 --> 02:19:18,000 RELATIONSHIP THAT ACTIVITIES IN 3769 02:19:18,000 --> 02:19:20,040 RELATIONSHIPS THAT WE TALK ABOUT 3770 02:19:20,040 --> 02:19:20,360 QUITE OFTEN. 3771 02:19:20,360 --> 02:19:24,400 NEXT SLIDE, PLEASE. 3772 02:19:24,400 --> 02:19:26,840 SO I WANT TO TALK JUST A LITTLE 3773 02:19:26,840 --> 02:19:28,400 BIT ABOUT COMMUNITY ENGAGEMENT 3774 02:19:28,400 --> 02:19:29,960 BEST PRACTICES AND HOW THIS IS 3775 02:19:29,960 --> 02:19:31,680 ALL SORT OF CONNECTED. 3776 02:19:31,680 --> 02:19:34,520 SO I TALK A LITTLE BIT HERE 3777 02:19:34,520 --> 02:19:35,520 ABOUT MUTALITY AND THAT IS THE 3778 02:19:35,520 --> 02:19:37,800 IDEA THAT WE ARE PRIORITIZING 3779 02:19:37,800 --> 02:19:39,800 THAT THERE ARE BENEFITS FOR ALL 3780 02:19:39,800 --> 02:19:41,920 PARTIES WHO ARE PARTICIPATING. 3781 02:19:41,920 --> 02:19:43,560 NOT JUST THE RESEARCH TEAM, NOT 3782 02:19:43,560 --> 02:19:46,880 JUST ACADEMIC INSTITUTION, BUT 3783 02:19:46,880 --> 02:19:48,760 THERE ARE PRIORITIES SET WITHIN 3784 02:19:48,760 --> 02:19:50,200 STUDIES THAT BENEFIT EVERYONE. 3785 02:19:50,200 --> 02:19:52,200 WE HEARD A SPEAKER EARLIER THAT 3786 02:19:52,200 --> 02:19:54,040 COMMENT WHEN THEY CREATED THEIR 3787 02:19:54,040 --> 02:19:54,680 MATERIALS, SOME OF THE FOLKS IN 3788 02:19:54,680 --> 02:19:55,960 THE COMMUNITY SAID YOU REALLY 3789 02:19:55,960 --> 02:19:57,360 SHOULD BE HIGHLIGHTING WHY THIS 3790 02:19:57,360 --> 02:19:58,560 IS MEANINGFUL. 3791 02:19:58,560 --> 02:20:00,720 WHY WE SHOULD PARTICIPATE. 3792 02:20:00,720 --> 02:20:01,600 HOW THIS BENEFITS THE COMMUNITY. 3793 02:20:01,600 --> 02:20:02,920 AND WE HEAR THAT ALL THE TIME. 3794 02:20:02,920 --> 02:20:05,360 SO WHAT ARE THE -- THERE IS SAY 3795 02:20:05,360 --> 02:20:06,480 WONDERFUL GRID CALLED THE GIVE 3796 02:20:06,480 --> 02:20:07,040 GET GRID. 3797 02:20:07,040 --> 02:20:09,160 WHAT ARE THE BENEFITS THAT BOTH 3798 02:20:09,160 --> 02:20:11,760 PARTIES HAVE TO THIS PARTICULAR 3799 02:20:11,760 --> 02:20:11,960 STUDY? 3800 02:20:11,960 --> 02:20:14,000 AND JUST BE MINDFUL OF BUILDING 3801 02:20:14,000 --> 02:20:16,440 IN BENEFITS TO PARTICIPATING FOR 3802 02:20:16,440 --> 02:20:17,840 PARTICIPANTS FOR THEIR FAMILIES 3803 02:20:17,840 --> 02:20:21,120 AND FOR COMMUNITY ORGANIZATIONS. 3804 02:20:21,120 --> 02:20:21,760 I HAVE TALKED A LITTLE BIT ABOUT 3805 02:20:21,760 --> 02:20:22,680 ALREADY ABOUT PARTNERS BUT I 3806 02:20:22,680 --> 02:20:24,960 ENCOURAGE FOLKS TO BE REALLY 3807 02:20:24,960 --> 02:20:26,520 CREATIVE ABOUT WHO YOUR PARTNERS 3808 02:20:26,520 --> 02:20:29,360 CAN BE AND WHAT THOSE 3809 02:20:29,360 --> 02:20:30,000 PARTNERSHIPS LOOK LIKE. 3810 02:20:30,000 --> 02:20:31,840 EVERY COMMUNITY HAS FAMILIES AND 3811 02:20:31,840 --> 02:20:33,360 ADVOCATES WHO ARE REALLY VOCAL 3812 02:20:33,360 --> 02:20:36,480 AND ACTIVE IN THEIR OWN SPACE 3813 02:20:36,480 --> 02:20:37,720 WHETHER THAT IS BASED ON THEIR 3814 02:20:37,720 --> 02:20:39,160 OWN HEALTH CARE JOURNEY, THEIR 3815 02:20:39,160 --> 02:20:41,520 INTERESTS IN POLICY, THEIR 3816 02:20:41,520 --> 02:20:42,280 INTEREST IN RESEARCH. 3817 02:20:42,280 --> 02:20:43,920 I THINK IT'S REALLY IMPORTANT 3818 02:20:43,920 --> 02:20:47,280 THAT WE EMBRACE INDIVIDUALS IN 3819 02:20:47,280 --> 02:20:48,760 THAT SPACE AND ALSO CREATE 3820 02:20:48,760 --> 02:20:50,200 OPPORTUNITIES FOR PEOPLE TO GROW 3821 02:20:50,200 --> 02:20:51,760 INTO THAT SPACE. 3822 02:20:51,760 --> 02:20:53,800 SO, IT'S NOT ENOUGH TO SAY THAT 3823 02:20:53,800 --> 02:20:57,040 WE ARE VALUING DIVERSITY AND 3824 02:20:57,040 --> 02:20:57,600 INCLUSIVITY IF WE ARE NOT 3825 02:20:57,600 --> 02:20:59,720 CREATING SPACE THAT IS ARE 3826 02:20:59,720 --> 02:21:00,280 WELCOMING FOR INDIVIDUALS. 3827 02:21:00,280 --> 02:21:02,920 SO WE CAN HIRE AND WE CAN BRING 3828 02:21:02,920 --> 02:21:03,760 INTO STUDIES HAVINGS FROM 3829 02:21:03,760 --> 02:21:04,640 COMMUNITIES OF COLOR BUT IF WE 3830 02:21:04,640 --> 02:21:07,360 DON'T CREATE REALLY SAFE OPEN 3831 02:21:07,360 --> 02:21:08,360 SPACES, WHERE FOLKS FEEL 3832 02:21:08,360 --> 02:21:09,800 COMFORTABLE, THEN WE WILL HAVE A 3833 02:21:09,800 --> 02:21:12,720 CHALLENGE WITH RETENTION AND 3834 02:21:12,720 --> 02:21:13,960 ALSO BUILDING THOSE MEANINGFUL 3835 02:21:13,960 --> 02:21:15,880 RELATIONSHIPS AND 3836 02:21:15,880 --> 02:21:16,240 COLLABORATIONS. 3837 02:21:16,240 --> 02:21:18,680 NEXT IS, EQUITY. 3838 02:21:18,680 --> 02:21:19,120 EQUITY IS KEY. 3839 02:21:19,120 --> 02:21:20,960 SO WHEN WE'RE CREATING 3840 02:21:20,960 --> 02:21:24,760 COLLABORATIONS, WHEN WE ARE 3841 02:21:24,760 --> 02:21:26,720 CREATING PARTNERSHIPS, I TALK 3842 02:21:26,720 --> 02:21:27,040 ABOUT DATING. 3843 02:21:27,040 --> 02:21:28,760 WE NEED TO MAKE SURE OUR POWER 3844 02:21:28,760 --> 02:21:29,760 DYNAMICS HAVE EQUITY. 3845 02:21:29,760 --> 02:21:31,800 WE NEED TO MAKE SURE THAT 3846 02:21:31,800 --> 02:21:32,840 DECISION-MAKING IS SHARED AND WE 3847 02:21:32,840 --> 02:21:35,880 NEED TO MAKE SURE THAT EVERYONE 3848 02:21:35,880 --> 02:21:37,200 CAN MEANINGFULLY CONTRIBUTE TO 3849 02:21:37,200 --> 02:21:38,240 THE COLLABORATION. 3850 02:21:38,240 --> 02:21:40,600 SO THEY ARE NOT JUST THERE TO 3851 02:21:40,600 --> 02:21:41,120 RUBBER STAMP. 3852 02:21:41,120 --> 02:21:42,720 NOT THERE TO CHECK A BOX. 3853 02:21:42,720 --> 02:21:44,000 FOLKS NEED TO BE ENGAGED IN A 3854 02:21:44,000 --> 02:21:45,360 REALLY MEANINGFUL WAY AND WE 3855 02:21:45,360 --> 02:21:47,120 NEED TO ASK FOLKS WHAT THAT 3856 02:21:47,120 --> 02:21:47,720 LOOKS LIKE FOR THEM. 3857 02:21:47,720 --> 02:21:49,480 WHAT WOULD BE A MEANINGFUL 3858 02:21:49,480 --> 02:21:50,880 CONTRIBUTION, A MEANINGFUL 3859 02:21:50,880 --> 02:21:52,560 OUTCOME FOR THEM? 3860 02:21:52,560 --> 02:21:55,800 AND THE LAST PIECE IS 3861 02:21:55,800 --> 02:21:56,160 COMPENSATION. 3862 02:21:56,160 --> 02:21:56,720 I AM ALWAYS SURPRISED QUITE 3863 02:21:56,720 --> 02:21:58,160 OFTEN WHEN I WORK WITH 3864 02:21:58,160 --> 02:22:00,640 RESEARCHERS WHO ARE NOT 3865 02:22:00,640 --> 02:22:02,320 COMPENSATING THEIR ADVISORY 3866 02:22:02,320 --> 02:22:02,880 BOARDS OR ADVISERS. 3867 02:22:02,880 --> 02:22:05,160 WE NEED TO COMPENSATE FOR TIME. 3868 02:22:05,160 --> 02:22:06,960 WE NEED TO COMPENSATE FOR ADVICE 3869 02:22:06,960 --> 02:22:10,120 AND WE NEED TO COMPENSATE FOR 3870 02:22:10,120 --> 02:22:10,400 GUIDANCE. 3871 02:22:10,400 --> 02:22:12,720 WHETHER THIS IS REVIEWING 3872 02:22:12,720 --> 02:22:13,560 MATERIALS THAT WILL BE USED IN 3873 02:22:13,560 --> 02:22:16,080 THE COMMUNITY OR THINKING ABOUT 3874 02:22:16,080 --> 02:22:17,800 HOW TO IMPROVE IMPLEMENTATION 3875 02:22:17,800 --> 02:22:20,880 FROM PERHAPS A CAREGIVER OR 3876 02:22:20,880 --> 02:22:21,360 PARTICIPANT PERSPECTIVE. 3877 02:22:21,360 --> 02:22:22,600 WE ARE ALL COMPENSATED FOR OUR 3878 02:22:22,600 --> 02:22:24,080 TIME AND I FEEL IT'S REALLY, 3879 02:22:24,080 --> 02:22:27,120 REALLY IMPORTANT THAT WE 3880 02:22:27,120 --> 02:22:27,840 COMPENSATE EQUITABLY FOR OTHER'S 3881 02:22:27,840 --> 02:22:29,920 TIME AND IF WE ARE SAYING THAT 3882 02:22:29,920 --> 02:22:31,960 OUR GOAL IS TO INCREASE THE 3883 02:22:31,960 --> 02:22:34,560 DIVERSITY OF INDIVIDUALS ENGAGED 3884 02:22:34,560 --> 02:22:35,600 IN RESEARCH, COMPENSATION 3885 02:22:35,600 --> 02:22:36,760 BECOMES EVEN MORE IMPORTANT FOR 3886 02:22:36,760 --> 02:22:38,400 MANY OF OUR FAMILIES WHO MAY 3887 02:22:38,400 --> 02:22:40,120 HAVE TO PAY FOR TRANSPORTATION 3888 02:22:40,120 --> 02:22:42,520 OR CHILD CARE OR TAKE OFF FROM 3889 02:22:42,520 --> 02:22:44,720 WORK TO BE ABLE TO PARTICIPATE 3890 02:22:44,720 --> 02:22:47,080 MEANINGFULLY IN THE WORK WE ARE 3891 02:22:47,080 --> 02:22:48,720 DOING. 3892 02:22:48,720 --> 02:22:51,400 NEXT SLIDE, PLEASE. 3893 02:22:51,400 --> 02:22:52,640 I THINK I'M GOING TO HAND THIS 3894 02:22:52,640 --> 02:22:55,480 OVER TO MY COLLEAGUE. 3895 02:22:55,480 --> 02:22:55,800 >> PERFECT. 3896 02:22:55,800 --> 02:22:56,240 THANK YOU, TIFFANY. 3897 02:22:56,240 --> 02:22:59,080 SO I WANTED TO TAKE SOME TIME TO 3898 02:22:59,080 --> 02:23:00,080 REALLY TALK ABOUT DESIGNING AND 3899 02:23:00,080 --> 02:23:03,520 DEVELOPING AND MESSAGING 3900 02:23:03,520 --> 02:23:03,960 RECRUITMENT MATERIALS. 3901 02:23:03,960 --> 02:23:06,320 SO YOU CAN SORT OF BE CREATING 3902 02:23:06,320 --> 02:23:07,640 MATERIALS THAT ARE TAILORED AND 3903 02:23:07,640 --> 02:23:10,200 ACCESSIBLE IN A LOT OF DIFFERENT 3904 02:23:10,200 --> 02:23:10,400 WAYS. 3905 02:23:10,400 --> 02:23:12,200 FIRST YOU REALLY WANT TO MAKE 3906 02:23:12,200 --> 02:23:15,320 SURE YOU PROVIDE STUDY MATERIALS 3907 02:23:15,320 --> 02:23:15,880 THAT ARE SUPPLEMENTAL TO THE 3908 02:23:15,880 --> 02:23:17,440 CONSENT FORM BECAUSE WE KNOW THE 3909 02:23:17,440 --> 02:23:19,360 CONSENT FORM IS NOT ENOUGH. 3910 02:23:19,360 --> 02:23:21,200 IT'S USUALLY REALLY LONG AND 3911 02:23:21,200 --> 02:23:22,480 HARD TO UNDERSTAND SO YOU WANT 3912 02:23:22,480 --> 02:23:24,320 TO BE DEVELOPING MATERIALS THAT 3913 02:23:24,320 --> 02:23:26,400 ARE EASY TO UNDERSTAND THAT 3914 02:23:26,400 --> 02:23:27,720 PROVIDE INFORMATION ABOUT THE 3915 02:23:27,720 --> 02:23:30,320 STUDY IN A WAY THAT IS 3916 02:23:30,320 --> 02:23:31,160 DIGESTIBLE. 3917 02:23:31,160 --> 02:23:33,360 AND THESE MATERIALS SHALL 3918 02:23:33,360 --> 02:23:34,000 HIGHLIGHT WHAT THE STUDY IS 3919 02:23:34,000 --> 02:23:36,560 ABOUT, WHY IT'S IMPORTANT, WHAT 3920 02:23:36,560 --> 02:23:39,840 PATIENTS WILL BE ASKED TO DO THE 3921 02:23:39,840 --> 02:23:41,120 EXPECTATIONS AROUND 3922 02:23:41,120 --> 02:23:42,040 PARTICIPATION, THE POTENTIAL 3923 02:23:42,040 --> 02:23:43,600 SIDE EFFECTS OR RISKS BUT ALSO 3924 02:23:43,600 --> 02:23:45,200 YOU SHOULD BE HIGHLIGHTING THE 3925 02:23:45,200 --> 02:23:46,600 POTENTIAL FOR BENEFIT AS WELL. 3926 02:23:46,600 --> 02:23:50,160 AND YOU CAN DO THIS THROUGH 3927 02:23:50,160 --> 02:23:53,360 DIAGRAMS, GRAPHICS, VIDEOS, EVEN 3928 02:23:53,360 --> 02:23:53,880 STUDY WEBSITES. 3929 02:23:53,880 --> 02:23:56,920 THESE ARE JUST A FEW EXAMPLES. 3930 02:23:56,920 --> 02:23:59,160 YOUR MATERIALS SHOULD BE EASY TO 3931 02:23:59,160 --> 02:24:02,000 UNDERSTAND FOR ALL LITERACY 3932 02:24:02,000 --> 02:24:02,240 LEVELS. 3933 02:24:02,240 --> 02:24:04,320 WE OFTEN RECOMMEND THAT YOU 3934 02:24:04,320 --> 02:24:06,760 SHOULD AIM FOR NO HIGHER THAN A 3935 02:24:06,760 --> 02:24:08,600 6-8 METHOD GRADE READING LEVEL 3936 02:24:08,600 --> 02:24:10,840 ON ANY PATIENT-FACING MATERIALS. 3937 02:24:10,840 --> 02:24:12,160 YOU ALSO WANT TO MAKE SURE 3938 02:24:12,160 --> 02:24:14,320 YOU'RE USING LANGUAGE THAT IS 3939 02:24:14,320 --> 02:24:15,280 TRANSPARENT, THAT IS CLEAR AND 3940 02:24:15,280 --> 02:24:17,280 THAT IS ROOTED IN TRUST 3941 02:24:17,280 --> 02:24:17,560 BUILDING. 3942 02:24:17,560 --> 02:24:18,960 AND THEN YOUR MATERIALS SHOULD 3943 02:24:18,960 --> 02:24:22,320 BE INCLUSIVE OF VISUAL AND 3944 02:24:22,320 --> 02:24:23,280 AUDITORY AND SENSORY NEEDS. 3945 02:24:23,280 --> 02:24:25,920 SO YOU WANT TO MAKE SURE THAT 3946 02:24:25,920 --> 02:24:27,840 THE COLOR CONTRAST, THE 3947 02:24:27,840 --> 02:24:29,840 GRAPHICS, THE SOUNDS, THE I'M 3948 02:24:29,840 --> 02:24:33,080 SORRIAGES, THAT THEY ARE NOT 3949 02:24:33,080 --> 02:24:33,440 OVERSTIMULATING. 3950 02:24:33,440 --> 02:24:34,600 AND THEN LASTLY, MAKING SURE 3951 02:24:34,600 --> 02:24:36,720 THAT MATERIALS ARE AVAILABLE IN 3952 02:24:36,720 --> 02:24:38,160 MULTIPLE LANGUAGES AND THEY 3953 02:24:38,160 --> 02:24:40,040 SHOULD BE REFLECTIVE OF THE 3954 02:24:40,040 --> 02:24:42,160 LANGUAGES THAT ARE USED AT YOUR 3955 02:24:42,160 --> 02:24:45,160 CLINICAL SITE AND THEN YOU WANT 3956 02:24:45,160 --> 02:24:46,080 TO MAKE SURE YOU'RE USING 3957 02:24:46,080 --> 02:24:47,720 RACIALLY-CONCORDANT IMAGES ON 3958 02:24:47,720 --> 02:24:49,880 THOSE MATERIALS. 3959 02:24:49,880 --> 02:24:52,400 NEXT SLIDE. 3960 02:24:52,400 --> 02:24:54,760 THESE ARE JUST A FEW EXAMPLES OF 3961 02:24:54,760 --> 02:24:57,480 MATERIALS THAT WE HAVE DEVELOPED 3962 02:24:57,480 --> 02:24:59,040 FOR OTHER TRIALS. 3963 02:24:59,040 --> 02:24:59,640 I WANT TO NOTE THAT YOU DON'T 3964 02:24:59,640 --> 02:25:02,400 NEED A LOT OF MONEY TO DEVELOP 3965 02:25:02,400 --> 02:25:02,920 THESE SORTS OF MATERIALS. 3966 02:25:02,920 --> 02:25:05,360 THERE ARE A LOT OF GREAT 3967 02:25:05,360 --> 02:25:07,120 PLATFORMS LIKE CAN VAFOR 3968 02:25:07,120 --> 02:25:08,720 DESIGNING MATERIALS. 3969 02:25:08,720 --> 02:25:10,120 MICROSOFT WORD ALLOWS YOU TO 3970 02:25:10,120 --> 02:25:10,920 CHECK LITERACY LEVELS. 3971 02:25:10,920 --> 02:25:13,360 THERE ARE PLENTY OF FREE 3972 02:25:13,360 --> 02:25:17,400 WEBSITES TO DOWNLOAD HIGH 3973 02:25:17,400 --> 02:25:23,600 RESOLUTION IMAGES. 3974 02:25:23,600 --> 02:25:23,920 NEXT SLIDE. 3975 02:25:23,920 --> 02:25:26,800 ONE RESOURCE I WANT TO HIGHLIGHT 3976 02:25:26,800 --> 02:25:30,160 IS RECRUITMENT AND RETENTION 3977 02:25:30,160 --> 02:25:31,640 MATERIALS TOOLKIT DEVELOPED FOR 3978 02:25:31,640 --> 02:25:34,040 RESEARCH TEAMS FOR CREATING 3979 02:25:34,040 --> 02:25:35,000 MATERIALS USED IN THEIR STUDIES. 3980 02:25:35,000 --> 02:25:36,360 IT'S A GREAT RYE SOURCE AND 3981 02:25:36,360 --> 02:25:38,560 CONTAINS IN A LOT MORE DETAIL, A 3982 02:25:38,560 --> 02:25:40,520 LOT OF GUIDELINES AND 3983 02:25:40,520 --> 02:25:42,080 RECOMMENDATIONS AND IT ALSO 3984 02:25:42,080 --> 02:25:45,240 LINKS TO TEMPLATES THAT YOU CAN 3985 02:25:45,240 --> 02:25:46,000 USE TO CREATE YOUR OWN 3986 02:25:46,000 --> 02:25:48,280 RECRUITMENT MATERIALS. 3987 02:25:48,280 --> 02:25:49,360 THIS IS HIGHLIGHTED IN THIS 3988 02:25:49,360 --> 02:25:51,640 SLIDE BUT YOU CAN ALSO FIND IT 3989 02:25:51,640 --> 02:25:53,360 AVAILABLE ON THE TRIAL 3990 02:25:53,360 --> 02:25:57,400 INNOVATION NETWORK'S WEBSITE. 3991 02:25:57,400 --> 02:25:59,920 NEXT SLIDE. 3992 02:25:59,920 --> 02:26:02,520 AND THIS IS JUST A LIST OF 3993 02:26:02,520 --> 02:26:04,600 ADDITIONAL RESOURCES THAT YOU 3994 02:26:04,600 --> 02:26:06,880 MAY FIND HELPFUL AND EVERYTHING 3995 02:26:06,880 --> 02:26:07,480 IS HYPERLINKED IF YOU WANT TO 3996 02:26:07,480 --> 02:26:08,960 LEARN MORE ABOUT THE THINGS WE 3997 02:26:08,960 --> 02:26:09,360 DISCUSSED TODAY. 3998 02:26:09,360 --> 02:26:10,360 AND I THINK IF YOU GO TO OUR 3999 02:26:10,360 --> 02:26:11,680 NEXT SLIDE, THAT IS OUR LAST 4000 02:26:11,680 --> 02:26:13,040 ONE. 4001 02:26:13,040 --> 02:26:21,360 SO I WILL TURN THINGS BACK TO 4002 02:26:21,360 --> 02:26:21,560 YOU. 4003 02:26:21,560 --> 02:26:21,840 THANK YOU. 4004 02:26:21,840 --> 02:26:24,760 >> SUJATA BARDHAM THANK YOU VERY 4005 02:26:24,760 --> 02:26:25,560 MUCH, TIFFANY, JASMINE AND 4006 02:26:25,560 --> 02:26:25,760 DEVON. 4007 02:26:25,760 --> 02:26:30,760 LET'S MOVE ON TO THE LAST 4008 02:26:30,760 --> 02:26:33,800 SPEAKER JANICE NODVIN, EXECUTIVE 4009 02:26:33,800 --> 02:26:35,440 DIRECTOR AT THE ADULT DISABILITY 4010 02:26:35,440 --> 02:26:37,360 MEDICAL HOME HEALTH CARE, A 4011 02:26:37,360 --> 02:26:38,640 NONPROFIT PROVIDING HEALTH CARE 4012 02:26:38,640 --> 02:26:40,880 POSSIBILITIES TO TEENS AND 4013 02:26:40,880 --> 02:26:43,400 ADULTS WITH THE DEVELOPMENTAL 4014 02:26:43,400 --> 02:26:43,720 DISABILITIES. 4015 02:26:43,720 --> 02:26:45,360 WELCOME, JANICE. 4016 02:26:45,360 --> 02:26:49,400 >> JANICE NODVIN: HI, THERE. 4017 02:26:49,400 --> 02:26:56,920 IT IS SO INTERESTING TO HEAR AS 4018 02:26:56,920 --> 02:26:58,680 MANY RESEARCH OPPORTUNITIES AND 4019 02:26:58,680 --> 02:26:58,920 FORMATS. 4020 02:26:58,920 --> 02:27:02,560 AND I'M VERY HUMBLED TO BE THE 4021 02:27:02,560 --> 02:27:06,640 LAST SPEAKER OF THIS PARTICULAR 4022 02:27:06,640 --> 02:27:06,840 SESSION. 4023 02:27:06,840 --> 02:27:11,240 BUT I THINK IN TERMS OF WHERE WE 4024 02:27:11,240 --> 02:27:14,880 ARE, WE SHOULD BE THE FIRST 4025 02:27:14,880 --> 02:27:19,080 BECAUSE THE FIRST HAS TO DO WITH 4026 02:27:19,080 --> 02:27:21,360 HEALTH CARE. 4027 02:27:21,360 --> 02:27:27,240 CAN YOU PLEASE CHANGE THE SLIDE? 4028 02:27:27,240 --> 02:27:31,720 SO I REPRESENT THE ADULT 4029 02:27:31,720 --> 02:27:33,600 DISABILITY MEDICAL HEALTH CARE. 4030 02:27:33,600 --> 02:27:38,160 WE ARE A PRIMARY HEALTH CARE 4031 02:27:38,160 --> 02:27:41,240 FACILITY THAT PROVIDES 4032 02:27:41,240 --> 02:27:44,000 POSSIBILITIES TO TEENS AND 4033 02:27:44,000 --> 02:27:45,880 ADULTS WITH DEVELOPMENTAL 4034 02:27:45,880 --> 02:27:46,480 DISABILITIES. 4035 02:27:46,480 --> 02:27:48,720 AND IN MY TIME TOGETHER WITH 4036 02:27:48,720 --> 02:27:51,480 YOU, I'D LIKE TO TELL YOU A 4037 02:27:51,480 --> 02:27:54,720 LITTLE BIT ABOUT WHAT WE OFFER 4038 02:27:54,720 --> 02:27:57,360 TO INDIVIDUALS AND FAMILIES WITH 4039 02:27:57,360 --> 02:27:59,800 DOWN SYNDROME AND OTHER 4040 02:27:59,800 --> 02:28:00,960 DEVELOPMENTAL DISABILITIES. 4041 02:28:00,960 --> 02:28:05,960 AND THEN, HOW WE ARE ABLE TO 4042 02:28:05,960 --> 02:28:08,560 HELP ENGAGE INDIVIDUALS TO 4043 02:28:08,560 --> 02:28:13,280 PARTICIPATE IN DOWN SYNDROME 4044 02:28:13,280 --> 02:28:16,240 RESEARCH AND WHAT WE CAN 4045 02:28:16,240 --> 02:28:21,360 ENCOURAGE THEM AND THE BARRIERS 4046 02:28:21,360 --> 02:28:22,280 THAT THEY ANTICIPATE. 4047 02:28:22,280 --> 02:28:27,840 NEXT SLIDE, PLEASE. 4048 02:28:27,840 --> 02:28:31,120 SO WHAT DOES ADMH OFFER? 4049 02:28:31,120 --> 02:28:33,360 WE KNOW THAT INDIVIDUALS THAT 4050 02:28:33,360 --> 02:28:37,360 ARE LIVING WITH DEVELOPMENTAL 4051 02:28:37,360 --> 02:28:39,040 DISABILITIES ABSOLUTELY 4052 02:28:39,040 --> 02:28:39,720 EXPERIENCE HEALTH CARE 4053 02:28:39,720 --> 02:28:40,040 DISPARITIES. 4054 02:28:40,040 --> 02:28:43,920 THAT'S THE WHOLE PREMISE OF THE 4055 02:28:43,920 --> 02:28:47,600 RESEARCH THAT IS BEING OFFERED. 4056 02:28:47,600 --> 02:28:53,360 WE WERE FOUNDED TO ADDRESS THOSE 4057 02:28:53,360 --> 02:28:54,720 DISPARITIES, ESPECIALLY AS 4058 02:28:54,720 --> 02:28:56,720 INDIVIDUALS ARE TRANSITIONING 4059 02:28:56,720 --> 02:29:03,200 FROM PEDIATRIC TO THE ADULT 4060 02:29:03,200 --> 02:29:03,720 SERVICE SYSTEM. 4061 02:29:03,720 --> 02:29:09,160 WE KNOW THAT PREVIOUSLY SPEAKING 4062 02:29:09,160 --> 02:29:14,000 THAT THIS EXPERIENCE IS VERY 4063 02:29:14,000 --> 02:29:16,960 DIFFICULT AND THAT FOR US, IT IS 4064 02:29:16,960 --> 02:29:20,800 RECEIVING BOTH PRIMARY CARE 4065 02:29:20,800 --> 02:29:25,880 WITHIN A MEDICAL HOME MODEL AND 4066 02:29:25,880 --> 02:29:29,120 THE COMPREHENSIVE CONSULTATIVE 4067 02:29:29,120 --> 02:29:29,360 MODEL. 4068 02:29:29,360 --> 02:29:33,960 SO WE CAN DO BOTH PRIMARY CARE 4069 02:29:33,960 --> 02:29:34,800 OR CONSTITUTIVE CARE. 4070 02:29:34,800 --> 02:29:41,360 WE ARE ONE OF THE FEW CLINICS 4071 02:29:41,360 --> 02:29:42,120 NATIONWIDE THAT DOES OFFER TEENS 4072 02:29:42,120 --> 02:29:44,960 AND ADULTS WITH DEVELOPMENTAL 4073 02:29:44,960 --> 02:29:45,960 DISABILITIES IN A 4074 02:29:45,960 --> 02:29:48,760 COMMUNITY-BASED SETTING TO 4075 02:29:48,760 --> 02:29:52,000 PROVIDE BOTH PRIMARY AND 4076 02:29:52,000 --> 02:29:57,360 SPECIALTY CARE IN ONE LOCATION. 4077 02:29:57,360 --> 02:30:03,080 NEXT SLIDE, PLEASE. 4078 02:30:03,080 --> 02:30:07,160 WE LOOK AT THE VISION OF THE 4079 02:30:07,160 --> 02:30:09,360 FAMILY OF THE INDIVIDUAL. 4080 02:30:09,360 --> 02:30:11,880 AND WILL FOR EVERYTHING THAT HAS 4081 02:30:11,880 --> 02:30:16,160 BEEN SAID IN THE PREVIOUS 4082 02:30:16,160 --> 02:30:18,760 PRESENTATIONS, THE JOURNEY IS 4083 02:30:18,760 --> 02:30:21,080 WITHIN THAT FAMILY. 4084 02:30:21,080 --> 02:30:24,760 IT STARTS WITH THE FAMILY, WITH 4085 02:30:24,760 --> 02:30:27,320 THE INDIVIDUAL, THE PARENTS AND 4086 02:30:27,320 --> 02:30:28,800 THE OTHER FAMILY MEMBERS, 4087 02:30:28,800 --> 02:30:30,760 WHETHER THEY ARE SIBLINGS. 4088 02:30:30,760 --> 02:30:35,680 AND WE KNOW THAT IT CHANGES 4089 02:30:35,680 --> 02:30:35,880 OFTEN. 4090 02:30:35,880 --> 02:30:39,400 SLIDE, PLEASE. 4091 02:30:39,400 --> 02:30:45,360 SO FOR US, AS A PRIMARY CARE 4092 02:30:45,360 --> 02:30:51,040 HEALTH CARE FACILITY, WE HAVE 4093 02:30:51,040 --> 02:30:51,800 SPECIFIC PRIORITIES. 4094 02:30:51,800 --> 02:30:54,720 AND THE FIRST PRIORITY, 4095 02:30:54,720 --> 02:31:00,600 PRIMARILY, IS THE HEALTH OF OUR 4096 02:31:00,600 --> 02:31:00,880 INDIVIDUALS. 4097 02:31:00,880 --> 02:31:04,840 WE USE COORDINATED CARE AND WE 4098 02:31:04,840 --> 02:31:09,360 MAKE SURE THAT NOT ONLY WE'RE 4099 02:31:09,360 --> 02:31:11,600 LOOKING AT PHYSICAL HEALTH, BUT 4100 02:31:11,600 --> 02:31:14,600 WE'RE LOOKING AT PSYCHOSOCIAL 4101 02:31:14,600 --> 02:31:16,000 HEALTH AND BEHAVIORAL HEALTH. 4102 02:31:16,000 --> 02:31:21,320 AND MAKING SURE THAT THAT FAMILY 4103 02:31:21,320 --> 02:31:25,360 AS THEY TRANSITION, HAS 4104 02:31:25,360 --> 02:31:26,240 INSURANCE ACCESS. 4105 02:31:26,240 --> 02:31:29,360 ONCE THAT IS THE PRIMARY GOAL IS 4106 02:31:29,360 --> 02:31:36,400 IN PLACE OR IS IN PROCESS, WE 4107 02:31:36,400 --> 02:31:40,520 LOOK AT FINANCIAL ITEMS THAT THE 4108 02:31:40,520 --> 02:31:41,360 FAMILY WILL NEED AS THEY 4109 02:31:41,360 --> 02:31:42,960 TRANSITION FROM PEDIATRIC TO 4110 02:31:42,960 --> 02:31:46,320 ADULT SERVICES. 4111 02:31:46,320 --> 02:31:50,840 THAT'S SOCIAL SECURITY, SSI, 4112 02:31:50,840 --> 02:31:51,440 WAIVERS AND SUPPORTS, AND FOR 4113 02:31:51,440 --> 02:31:56,000 THOSE OF YOU AROUND THE COUNTRY, 4114 02:31:56,000 --> 02:31:58,040 IT DIFFERS FROM STATE TO STATE. 4115 02:31:58,040 --> 02:31:59,360 EMPLOYMENT AND IN PROGRAMMING. 4116 02:31:59,360 --> 02:32:04,200 AND THEN WE ALSO ADDRESS THE 4117 02:32:04,200 --> 02:32:05,880 LEGAL RAMIFICATIONS WHICH WILL 4118 02:32:05,880 --> 02:32:09,160 ADDRESS AND GO INTO A LITTLE BIT 4119 02:32:09,160 --> 02:32:11,360 MORE IN JUST A MOMENT. 4120 02:32:11,360 --> 02:32:13,000 ONCE THOSE THINGS ARE IN 4121 02:32:13,000 --> 02:32:17,280 PROCESS, THE FAMILY IS READY TO 4122 02:32:17,280 --> 02:32:21,520 THEN SHARE EXPERIENCES, WHETHER 4123 02:32:21,520 --> 02:32:24,720 IT IS THROUGH RESEARCH 4124 02:32:24,720 --> 02:32:27,560 OPPORTUNITIES OR SUPPORT GROUPS, 4125 02:32:27,560 --> 02:32:28,960 RECREATION AND RESIDENTIAL. 4126 02:32:28,960 --> 02:32:37,000 NEXT SLIDE, PLEASE. 4127 02:32:37,000 --> 02:32:38,240 SO I WANTED TO REALLY GO INTO A 4128 02:32:38,240 --> 02:32:42,760 LITTLE BIT ABOUT WHAT WE MEAN AS 4129 02:32:42,760 --> 02:32:53,320 TRANSITIONING TO ADULT SERVICES. 4130 02:33:00,520 --> 02:33:03,120 IF FAMILIES HAVE BEEN WITH A 4131 02:33:03,120 --> 02:33:04,240 PEDIATRIC GROUP AND SCHOOL 4132 02:33:04,240 --> 02:33:05,000 SYSTEM FOR MANY, MANY YEARS. 4133 02:33:05,000 --> 02:33:09,360 AND WHEN THAT TRANSITION OCCURS, 4134 02:33:09,360 --> 02:33:13,280 IT'S REALLY QUITED DIFFICULT. 4135 02:33:13,280 --> 02:33:14,720 UNTIL VERY RECENTLY, THERE WERE 4136 02:33:14,720 --> 02:33:18,040 VERY FEW GUIDELINES FOR ADULTS 4137 02:33:18,040 --> 02:33:21,360 PAST AGE 21. 4138 02:33:21,360 --> 02:33:25,120 WE ARE SO GRATEFUL FOR THE 4139 02:33:25,120 --> 02:33:26,840 RESEARCH AND THE APPROVAL AND 4140 02:33:26,840 --> 02:33:29,320 PRINTING OF THE CLINICAL 4141 02:33:29,320 --> 02:33:32,520 GUIDELINES FOR ADULT CARE WITH 4142 02:33:32,520 --> 02:33:33,080 DOWN SYNDROME. 4143 02:33:33,080 --> 02:33:35,720 AND ALSO OTHER DEVELOPMENTAL 4144 02:33:35,720 --> 02:33:36,040 DISABILITIES. 4145 02:33:36,040 --> 02:33:39,800 WE KNOW THAT IN 4146 02:33:39,800 --> 02:33:41,880 INTERDISCIPLINARY TEAM IS A 4147 02:33:41,880 --> 02:33:45,360 WELL-SUITED WAY TO ADDRESS THE 4148 02:33:45,360 --> 02:33:47,160 HEALTH IN THESE, THE FULL-TIME 4149 02:33:47,160 --> 02:33:50,720 HEALTH, WHETHER IT IS HEALTH 4150 02:33:50,720 --> 02:33:53,840 CARE, PSYCHOSOCIAL OR BEHAVIORAL 4151 02:33:53,840 --> 02:33:54,720 CONSIDERATIONS. 4152 02:33:54,720 --> 02:33:58,080 AND SO, WE DO THAT WITHIN THE 4153 02:33:58,080 --> 02:34:04,000 FRAMEWORK OF A PATIENT-CENTERED 4154 02:34:04,000 --> 02:34:04,760 MEDICAL HOME. 4155 02:34:04,760 --> 02:34:11,760 NEXT SLIDE, PLEASE. 4156 02:34:11,760 --> 02:34:12,760 THE TERM, PATIENT-CENTERED 4157 02:34:12,760 --> 02:34:16,280 MEDICAL HOME IS A CERTIFICATION. 4158 02:34:16,280 --> 02:34:20,080 AND THIS IS A CERTIFICATION THAT 4159 02:34:20,080 --> 02:34:24,760 PRACTICES, MAY ATTAIN THROUGH A 4160 02:34:24,760 --> 02:34:29,680 LOT OF TRAINING AND GETTING THE 4161 02:34:29,680 --> 02:34:30,040 CERTIFICATION. 4162 02:34:30,040 --> 02:34:35,320 IT IS ONE THAT IS ACCESSIBLE, 4163 02:34:35,320 --> 02:34:37,360 COMPASSIONATE, COORDINATED, 4164 02:34:37,360 --> 02:34:40,760 CONTINUOUS, COMPREHENSIVE AND 4165 02:34:40,760 --> 02:34:41,400 FAMILY-CENTERED. 4166 02:34:41,400 --> 02:34:43,960 WE ARE VERY LUCKY TO PARTNER 4167 02:34:43,960 --> 02:34:47,960 WITH A COMMUNITY-BASED PROGRAM 4168 02:34:47,960 --> 02:34:52,000 THAT IS CERTIFIED AS A 4169 02:34:52,000 --> 02:34:53,600 PATIENT-CENTERED MEDICAL HOME. 4170 02:34:53,600 --> 02:35:00,840 NEXT SLIDE. 4171 02:35:00,840 --> 02:35:04,800 THE INDIVIDUAL IS THE ESSENTIAL 4172 02:35:04,800 --> 02:35:07,520 MEMBER OF THE TEAM, THAT IS 4173 02:35:07,520 --> 02:35:12,040 FIRST AND FOREMOST IT IS THE 4174 02:35:12,040 --> 02:35:14,680 INDIVIDUAL THAT HAS MADE 4175 02:35:14,680 --> 02:35:17,200 COMFORTABLE AND I WAS SO GLAD TO 4176 02:35:17,200 --> 02:35:18,280 HEAR SOME OF THE COMMENTS 4177 02:35:18,280 --> 02:35:20,080 PREVIOUSLY THAT REPORTED THAT. 4178 02:35:20,080 --> 02:35:23,800 BUT FOR MANY OF THE PATIENTS 4179 02:35:23,800 --> 02:35:25,600 THAT COME INTO A MEDICAL 4180 02:35:25,600 --> 02:35:30,760 PRACTICE, THEY MAY NOT HAVE BEEN 4181 02:35:30,760 --> 02:35:35,400 IN A MEDICAL PRACTICE FOR A VERY 4182 02:35:35,400 --> 02:35:35,680 LONG TIME. 4183 02:35:35,680 --> 02:35:40,200 AND HAVE EXTREME HIGH ANXIETY. 4184 02:35:40,200 --> 02:35:42,760 SO ESTABLISHING RAPPORT, MAKING 4185 02:35:42,760 --> 02:35:45,400 THEM FEEL COMFORTABLE, LISTENING 4186 02:35:45,400 --> 02:35:49,200 TO THE INDIVIDUAL AND TAKING THE 4187 02:35:49,200 --> 02:35:50,920 QUEUES FROM THE INDIVIDUAL IS 4188 02:35:50,920 --> 02:35:51,160 PARAMOUNT. 4189 02:35:51,160 --> 02:35:58,840 NEXT SLIDE. 4190 02:35:58,840 --> 02:36:02,040 I WANTED TO SHARE THIS SLIDE 4191 02:36:02,040 --> 02:36:06,760 WITH YOU THAT LOOKS ABOUT ACCESS 4192 02:36:06,760 --> 02:36:09,360 TO HEALTH CARE FOR ADULTS WITH 4193 02:36:09,360 --> 02:36:09,720 DISABILITIES. 4194 02:36:09,720 --> 02:36:16,680 THIS ONE HAS JUST COME OUT. 4195 02:36:16,680 --> 02:36:18,440 1-3, ADULTS WITH DISABILITIES 4196 02:36:18,440 --> 02:36:22,760 BEING 18-44 YEARS OLD, DON'T 4197 02:36:22,760 --> 02:36:25,240 HAVE THEIR USUAL HEALTH CARE 4198 02:36:25,240 --> 02:36:25,520 PROVIDER. 4199 02:36:25,520 --> 02:36:29,880 THEY DON'T HAVE A PRIMARY CARE 4200 02:36:29,880 --> 02:36:31,000 PROVIDER. 4201 02:36:31,000 --> 02:36:34,200 1-3 HAVE UNMET HEALTH CARE NEEDS 4202 02:36:34,200 --> 02:36:36,800 BECAUSE OF COST. 4203 02:36:36,800 --> 02:36:41,360 AND ALARMINGLY, 1-4 HAVE NOT HAD 4204 02:36:41,360 --> 02:36:45,360 A ROUTINE CHECK-UP WITHIN THE 4205 02:36:45,360 --> 02:36:46,880 PAST YEAR. 4206 02:36:46,880 --> 02:36:53,360 THAT IS WHERE WE, AS A PRIMARY 4207 02:36:53,360 --> 02:36:56,160 CARE FACILITY AND OTHERS AROUND 4208 02:36:56,160 --> 02:36:58,560 THE COUNTRY, NEED TO ADDRESS 4209 02:36:58,560 --> 02:37:06,800 THAT ISSUE AND BE ABLE TO MAKE 4210 02:37:06,800 --> 02:37:08,240 ACCESSIBILITY MORE AVAILABLE. 4211 02:37:08,240 --> 02:37:12,320 NEXT SLIDE. 4212 02:37:12,320 --> 02:37:15,720 SO I WANTED TO GIVEN YOU SOME 4213 02:37:15,720 --> 02:37:18,760 FACTS THAT WE ENCOUNTER IN OUR 4214 02:37:18,760 --> 02:37:23,120 CLINIC WITH TEENS AND ADULTS. 4215 02:37:23,120 --> 02:37:28,520 AND WHAT WE HAVE EXPERIENCED. 4216 02:37:28,520 --> 02:37:33,920 NEXT SLIDE. 4217 02:37:33,920 --> 02:37:36,600 SO THESE ARE QUITE A NUMBER OF 4218 02:37:36,600 --> 02:37:38,160 THE COMMON CO-MORBIDITIES IN 4219 02:37:38,160 --> 02:37:40,240 ADULTS WITH DOWN SYNDROME. 4220 02:37:40,240 --> 02:37:44,480 THE ARROWED ONES ARE THE ONES 4221 02:37:44,480 --> 02:37:49,240 THAT OUR DATA SHOWS ARE MORE 4222 02:37:49,240 --> 02:37:49,840 PROMINENT WITH THE INDIVIDUALS 4223 02:37:49,840 --> 02:37:53,480 THAT WE ARE SEEING. 4224 02:37:53,480 --> 02:37:55,160 HYPOTHYROIDISM. 4225 02:37:55,160 --> 02:37:56,760 CONGENITAL HEART DISEASE. 4226 02:37:56,760 --> 02:37:57,320 ANXIETY. 4227 02:37:57,320 --> 02:38:02,240 OCD AND DEPRESSION. 4228 02:38:02,240 --> 02:38:02,560 EAR IMPACTION. 4229 02:38:02,560 --> 02:38:05,360 SKIN DISORDERS AND RIGHT BEHIND 4230 02:38:05,360 --> 02:38:10,760 THAT IS SLEEP APNEA AND AUTISM. 4231 02:38:10,760 --> 02:38:20,960 NEXT SLIDE. 4232 02:38:21,240 --> 02:38:26,400 SO, WE USE THIS AS A GAUGE AS 4233 02:38:26,400 --> 02:38:28,200 TRANSITION TIMES THAT PATIENTS 4234 02:38:28,200 --> 02:38:30,840 COME TO US, INDIVIDUALS, AND 4235 02:38:30,840 --> 02:38:34,720 FAMILIES COME TO US AND THIS IS 4236 02:38:34,720 --> 02:38:41,200 ALSO AN IDEAL TIME TO OFFER 4237 02:38:41,200 --> 02:38:45,320 RESEARCH OPPORTUNITIES TO FAMILY 4238 02:38:45,320 --> 02:38:45,560 MEMBERS. 4239 02:38:45,560 --> 02:38:48,760 ONE IS AT THE AGE OF PUBERTY 4240 02:38:48,760 --> 02:38:53,120 AROUND 12 WHERE THE BODY SYSTEM 4241 02:38:53,120 --> 02:38:55,000 IS RIGHT ON QUEUE BUT 4242 02:38:55,000 --> 02:38:56,120 DEVELOPMENTALLY THAT PERSON HAS 4243 02:38:56,120 --> 02:38:57,920 NOT CAUGHT UP WITH WHAT THEIR 4244 02:38:57,920 --> 02:38:59,680 BODY IS DOING. 4245 02:38:59,680 --> 02:39:03,400 AND THERE IS A LOT OF ISSUES 4246 02:39:03,400 --> 02:39:06,360 THAT OCCUR AND QUITE OFTEN, 4247 02:39:06,360 --> 02:39:11,240 PEDIATRICIANS WILL THEN REFER TO 4248 02:39:11,240 --> 02:39:11,400 US. 4249 02:39:11,400 --> 02:39:13,160 THE OTHER MAJOR AGE IS AGE OF 4250 02:39:13,160 --> 02:39:13,960 18. 4251 02:39:13,960 --> 02:39:15,880 THAT'S THE AGE OF MAJORITY. 4252 02:39:15,880 --> 02:39:18,640 AND THERE IS QUITE A BIT OF 4253 02:39:18,640 --> 02:39:21,360 TRANSITION THAT GOES ON WITH THE 4254 02:39:21,360 --> 02:39:24,480 AGE OF MAJORITY AND WE ARE 4255 02:39:24,480 --> 02:39:27,480 GETTING A NUMBER OF CALLS AROUND 4256 02:39:27,480 --> 02:39:28,880 THIS AGE. 4257 02:39:28,880 --> 02:39:34,520 THAT IS WHERE THE ADULT MEDICAID 4258 02:39:34,520 --> 02:39:38,320 COMES INTO PLAY, ACCESS TO 4259 02:39:38,320 --> 02:39:40,720 MEDICAID WAIVERS, UNDERSTANDING 4260 02:39:40,720 --> 02:39:42,840 WHAT GUARDIANSHIP OPTIONS MAY 4261 02:39:42,840 --> 02:39:45,960 BE, THE ELIGIBILITY FOR SOCIAL 4262 02:39:45,960 --> 02:39:48,800 SECURITY AND BELIEVE IT OR NOT, 4263 02:39:48,800 --> 02:39:54,440 IT MAY ALSO BE VOTING T MAY ALSO 4264 02:39:54,440 --> 02:39:56,320 BE JURY DUTY. 4265 02:39:56,320 --> 02:40:03,400 IT MAY ALSO ENTAIL JOINING THE 4266 02:40:03,400 --> 02:40:04,680 ARMED SERVICES. 4267 02:40:04,680 --> 02:40:08,160 THE AGE OF 21, THAT IS TRULY THE 4268 02:40:08,160 --> 02:40:16,560 AGE THAT A PERSON IS NECESSARY 4269 02:40:16,560 --> 02:40:19,560 TO LEAVE PEDIATRIC HOSPITALS OR 4270 02:40:19,560 --> 02:40:21,360 PEDIATRIC SPECIALISTS. 4271 02:40:21,360 --> 02:40:24,800 NEXT SLIDE. 4272 02:40:24,800 --> 02:40:27,240 THE AGE OF 22, THE END OF 4273 02:40:27,240 --> 02:40:27,520 SCHOOL. 4274 02:40:27,520 --> 02:40:33,160 AND THAT IS QUITE A BIT OF GREAT 4275 02:40:33,160 --> 02:40:34,960 RIGHT NOW BECAUSE OF 4276 02:40:34,960 --> 02:40:37,360 OPPORTUNITIES THAT ARE ARISING 4277 02:40:37,360 --> 02:40:42,200 ALL AROUND THE COUNTRY FOR 4278 02:40:42,200 --> 02:40:43,120 POST-SECONDARY OPPORTUNITIES. 4279 02:40:43,120 --> 02:40:49,760 NEXT SLIDE, PLEASE. 4280 02:40:49,760 --> 02:40:52,280 SO WHEN IS IT AND HOW IS IT WE 4281 02:40:52,280 --> 02:40:55,800 SHARE RESEARCH? 4282 02:40:55,800 --> 02:40:58,600 SO, IT'S APPROPRIATE FINDING THE 4283 02:40:58,600 --> 02:41:00,920 APPROPRIATE RESEARCH, MAKING 4284 02:41:00,920 --> 02:41:02,040 SURE THAT THE INDIVIDUAL AND 4285 02:41:02,040 --> 02:41:05,360 FAMILY ARE A GOOD FIT AND 4286 02:41:05,360 --> 02:41:09,000 REFERRING THEM TO THAT RESEARCH. 4287 02:41:09,000 --> 02:41:12,080 WE ALSO ARE VERY SMALL BUT WE 4288 02:41:12,080 --> 02:41:16,800 PARTICIPATE IN RESEARCH AND I 4289 02:41:16,800 --> 02:41:21,360 BELIEVE OTHER PRESENTATIONS HAVE 4290 02:41:21,360 --> 02:41:23,120 REVIEWED A LOT OF THE 4291 02:41:23,120 --> 02:41:25,400 EXPERIENCES IN RECRUITMENT AND 4292 02:41:25,400 --> 02:41:27,800 UNDERSTANDING CONSENT FORMS. 4293 02:41:27,800 --> 02:41:29,360 SOME OF THE BARRIERS ARE NOT 4294 02:41:29,360 --> 02:41:32,320 ONLY THE CULTURAL BARRIERS THAT 4295 02:41:32,320 --> 02:41:36,840 HAVE BEEN PRESENTED, BUT ALSO 4296 02:41:36,840 --> 02:41:39,040 BEING ABLE TO TRACK THE RESULTS, 4297 02:41:39,040 --> 02:41:44,720 KEEPING THE PARTICIPANTS ENGAGED 4298 02:41:44,720 --> 02:41:46,640 AND THE LANGUAGE BARRIERS OF THE 4299 02:41:46,640 --> 02:41:48,840 PARTICIPANTS BE EXEXPRESSIVE AND 4300 02:41:48,840 --> 02:41:49,360 RECEPTIVE LANGUAGE. 4301 02:41:49,360 --> 02:41:57,240 NEXT SLIDE. 4302 02:41:57,240 --> 02:41:58,640 PUTTING THAT PLAN IN PLACE AND 4303 02:41:58,640 --> 02:42:00,160 MY TIME IS ALMOST UP. 4304 02:42:00,160 --> 02:42:01,600 I WANTED TO SHARE ONE ITEM WITH 4305 02:42:01,600 --> 02:42:10,920 YOU ON THE NEXT SLIDE. 4306 02:42:10,920 --> 02:42:12,840 THIS IS EXTREMELY IMPORTANT AND 4307 02:42:12,840 --> 02:42:15,680 A GREAT TAKE-AWAY MESSAGE. 4308 02:42:15,680 --> 02:42:17,080 FOR PEOPLE WITH DISABILITIES, 4309 02:42:17,080 --> 02:42:22,960 THEY SHOULD LIVE IN THE LEAST 4310 02:42:22,960 --> 02:42:23,520 RESTRICTIVE, MOST INCLUSIVE 4311 02:42:23,520 --> 02:42:26,360 ENVIRONMENT POSSIBLE. 4312 02:42:26,360 --> 02:42:27,920 LIKEWISE, ANY LEGAL MEASURES 4313 02:42:27,920 --> 02:42:30,560 SHOULD BE THE LEAST RESTRICTIVE 4314 02:42:30,560 --> 02:42:33,680 NEEDED, DESIGNED TO PROTECT 4315 02:42:33,680 --> 02:42:37,160 INDIVIDUALS WHEN NECESSARY, AND 4316 02:42:37,160 --> 02:42:39,280 GIVE THEM INDEPENDENCE AND 4317 02:42:39,280 --> 02:42:42,520 AUTONOMY WHENEVER POSSIBLE. 4318 02:42:42,520 --> 02:42:46,600 IT LOOKS LIKE MY TIME IS UP. 4319 02:42:46,600 --> 02:42:47,680 MY PRESENTATION IS NOT. 4320 02:42:47,680 --> 02:42:55,200 I SPOKE MUCH SLOWER THAN MANY OF 4321 02:42:55,200 --> 02:42:57,160 THE OTHER PRESENTERS HAVE. 4322 02:42:57,160 --> 02:42:59,720 NEXT SLIDE. 4323 02:42:59,720 --> 02:43:03,240 IF YOU'LL JUST MOVE TO ONE MORE 4324 02:43:03,240 --> 02:43:05,880 SLIDE AFTER THIS. 4325 02:43:05,880 --> 02:43:06,680 ONE MORE. 4326 02:43:06,680 --> 02:43:10,800 WE HAVE ADAPTED AND WE UTILIZE A 4327 02:43:10,800 --> 02:43:12,800 LOT OF THE THINGS THAT HAVE BEEN 4328 02:43:12,800 --> 02:43:17,400 SAID IN OTHER PRESENTATIONS, 4329 02:43:17,400 --> 02:43:19,560 TELEMEDICINE, VIRTUAL, 4330 02:43:19,560 --> 02:43:19,920 COMMUNITY-BASED. 4331 02:43:19,920 --> 02:43:24,360 WE ADAPT TO WHAT WE HAVE IN OUR 4332 02:43:24,360 --> 02:43:24,600 OFFICES. 4333 02:43:24,600 --> 02:43:28,000 OUR TEAM MEMBERS ARE MADE UP OF 4334 02:43:28,000 --> 02:43:32,000 SOCIAL WORK BEHAVIOR, MEDICAL, 4335 02:43:32,000 --> 02:43:33,360 FAMILY COUNSELING. 4336 02:43:33,360 --> 02:43:39,760 NEXT SLIDE. 4337 02:43:39,760 --> 02:43:41,960 THERE ARE OUR PATIENTS AND YOU 4338 02:43:41,960 --> 02:43:47,160 CAN SEE WE HAVE A LARGE VARIETY 4339 02:43:47,160 --> 02:43:49,400 OF INDIVIDUALS, A LARGE AGE 4340 02:43:49,400 --> 02:43:52,400 RANGE STARTING FROM AROUND 12 4341 02:43:52,400 --> 02:43:54,240 AND OUR OLDEST PATIENT THAT WE 4342 02:43:54,240 --> 02:43:59,000 ARE SEEING IS IN THEIR LATE 4343 02:43:59,000 --> 02:44:00,080 70s. 4344 02:44:00,080 --> 02:44:03,400 AND WE DO HAVE A RESOURCE LIST 4345 02:44:03,400 --> 02:44:08,360 ON THE LAST SLIDE. 4346 02:44:08,360 --> 02:44:12,800 SOME OF THESE HAVE TO DO WITH 4347 02:44:12,800 --> 02:44:15,000 LOCAL OR STATE AGENCIES BUT OF 4348 02:44:15,000 --> 02:44:17,920 COURSE, MANY OF THEM HAVE TO DO 4349 02:44:17,920 --> 02:44:21,680 WITH NATIONAL AGENCIES. 4350 02:44:21,680 --> 02:44:28,320 AND FINALLY -- THANK YOU. 4351 02:44:28,320 --> 02:44:31,600 WE ARE IN THE MIDST OF ONE OF 4352 02:44:31,600 --> 02:44:35,920 OUR BIG FUNDRAISERS AND SHOUT 4353 02:44:35,920 --> 02:44:38,480 OUTS TO OUR INDIVIDUAL THAT IS 4354 02:44:38,480 --> 02:44:39,440 WE SERVE. 4355 02:44:39,440 --> 02:44:42,240 TAKE A LOOK WAT WE DO ON OUR 4356 02:44:42,240 --> 02:44:42,840 WEBSITE. 4357 02:44:42,840 --> 02:44:47,560 OUR ADMH RUN FOR HEALTH IS THIS 4358 02:44:47,560 --> 02:44:47,800 SATURDAY. 4359 02:44:47,800 --> 02:44:51,120 AND I THANK YOU SO MUCH FOR 4360 02:44:51,120 --> 02:44:52,960 INCLUDING ME. 4361 02:44:52,960 --> 02:44:59,240 I FEEL VERY HUMBLED TO BE WITH 4362 02:44:59,240 --> 02:45:04,680 SUCH ILUMINOUS AND AMAZING 4363 02:45:04,680 --> 02:45:04,960 PRESENTERS. 4364 02:45:04,960 --> 02:45:06,040 THANKS. 4365 02:45:06,040 --> 02:45:06,880 >> THANK YOU VERY MUCH. 4366 02:45:06,880 --> 02:45:09,120 THE SLIDES WILL BE MADE 4367 02:45:09,120 --> 02:45:12,280 AVAILABLE ON THE INCLUDE 4368 02:45:12,280 --> 02:45:13,360 WEBSITE. 4369 02:45:13,360 --> 02:45:15,560 SO, ANYONE WHO IS INTERESTED 4370 02:45:15,560 --> 02:45:19,680 WILL HAVE ACCESS TO THE SLIDES 4371 02:45:19,680 --> 02:45:20,320 INCLUDING YOUR VERY HELPFUL 4372 02:45:20,320 --> 02:45:21,960 SLIDE WITH ALL THE RESOURCES 4373 02:45:21,960 --> 02:45:23,320 LISTED. 4374 02:45:23,320 --> 02:45:25,040 SO REALLY APPRECIATE THAT. 4375 02:45:25,040 --> 02:45:28,440 SO NOW I WILL REQUEST ALL THE 4376 02:45:28,440 --> 02:45:33,760 SPEAKERS OF SESSION 5,, ADORE 4377 02:45:33,760 --> 02:45:35,200 CORE TEAM, RECRUITMENT 4378 02:45:35,200 --> 02:45:35,920 INNOVATION CENTER TEAM AND YOU 4379 02:45:35,920 --> 02:45:41,920 CAN STAY ON, TO JUST COME ON FOR 4380 02:45:41,920 --> 02:45:43,800 Q&A AND THEN WE WILL TAKE A 4381 02:45:43,800 --> 02:45:44,440 SHORT BREAK. 4382 02:45:44,440 --> 02:45:48,880 DO YOU HAVE A QUESTION FROM 4383 02:45:48,880 --> 02:45:50,000 DR. SENATORO IN THE CHAT AND I 4384 02:45:50,000 --> 02:45:53,760 CAN READ THAT OUT OR -- 4385 02:45:53,760 --> 02:45:59,000 >> YES, PLEASE READ IT OUT. 4386 02:45:59,000 --> 02:46:00,440 >> GIVING THE OPPORTUNITY TO ASK 4387 02:46:00,440 --> 02:46:03,480 THE QUESTION. 4388 02:46:03,480 --> 02:46:03,880 >> HI, EVERYONE. 4389 02:46:03,880 --> 02:46:07,400 YES, THIS IS STEPHANIE SAN TORO. 4390 02:46:07,400 --> 02:46:09,200 I WONDERED IF YOU COULD SHARE 4391 02:46:09,200 --> 02:46:11,440 THE REFERENCE FOR THAT 4392 02:46:11,440 --> 02:46:12,120 STATISTICS YOU GAVE ABOUT 1-3 4393 02:46:12,120 --> 02:46:13,320 NOT HAVING A USUAL HEALTH CARE 4394 02:46:13,320 --> 02:46:13,800 PROVIDER. 4395 02:46:13,800 --> 02:46:16,240 I THINK THAT IS REALLY 4396 02:46:16,240 --> 02:46:16,800 INTERESTING AND TRULY LIKE A 4397 02:46:16,800 --> 02:46:17,480 CALL TO ACTION. 4398 02:46:17,480 --> 02:46:18,880 SO THANK YOU VERY MUCH FOR 4399 02:46:18,880 --> 02:46:20,120 SHARING THAT. 4400 02:46:20,120 --> 02:46:23,560 >> YES, I SHALL DO THAT. 4401 02:46:23,560 --> 02:46:24,120 >> THANK YOU. 4402 02:46:24,120 --> 02:46:29,400 I HAD A QUESTION FOR THE 4403 02:46:29,400 --> 02:46:33,880 RECRUITMENT INNOVATION CENTER: 4404 02:46:33,880 --> 02:46:36,840 YOU PROVIDED THE INFORMATION TO 4405 02:46:36,840 --> 02:46:37,800 THE COMMUNITY ENGAGEMENT STUDIO. 4406 02:46:37,800 --> 02:46:40,480 AND MY QUESTION IS FOR -- SO I'M 4407 02:46:40,480 --> 02:46:46,280 A INVESTIGATOR ON A PROTOCOL 4408 02:46:46,280 --> 02:46:48,680 WHICH IS NIH SUPPORTED PROTOCOL 4409 02:46:48,680 --> 02:46:50,720 IT'S DS CONNECT REGISTRY. 4410 02:46:50,720 --> 02:46:54,360 SO HOW DOES THE CONSULTATION 4411 02:46:54,360 --> 02:46:59,720 WORK FOR INTRAMURAL PROTOCOL? 4412 02:46:59,720 --> 02:47:01,960 >> I WILL ASK MY COLLEAGUES TO 4413 02:47:01,960 --> 02:47:04,160 CORRECT ME IF I SAY ANYTHING 4414 02:47:04,160 --> 02:47:04,360 WRONG. 4415 02:47:04,360 --> 02:47:04,960 FORMERLY YOU SUBMIT A REQUEST 4416 02:47:04,960 --> 02:47:06,840 THROUGH THE TRIAL INNOVATION 4417 02:47:06,840 --> 02:47:09,160 NETWORK AND THEN THAT GROUP 4418 02:47:09,160 --> 02:47:10,320 EVALUATES ALL REQUESTS AND THEN 4419 02:47:10,320 --> 02:47:11,560 PUSHES FORWARD TO THE 4420 02:47:11,560 --> 02:47:12,760 RECRUITMENT INNOVATION CENTER 4421 02:47:12,760 --> 02:47:16,960 FOR SERVICES FOR MULTI-SITE 4422 02:47:16,960 --> 02:47:17,200 TRIALS. 4423 02:47:17,200 --> 02:47:18,520 JASMINE AND DEVON AND I SPEAK 4424 02:47:18,520 --> 02:47:19,920 CORRECTLY ABOUT OUR CURRENT 4425 02:47:19,920 --> 02:47:20,160 PROCESS. 4426 02:47:20,160 --> 02:47:22,120 >> YOU ARE SPEAKING CORRECTLY. 4427 02:47:22,120 --> 02:47:23,720 YOU GO THROUGH THE 10 BUT YOU'RE 4428 02:47:23,720 --> 02:47:27,400 ALSO WELCOME TO E-MAIL US 4429 02:47:27,400 --> 02:47:27,680 DIRECTLY. 4430 02:47:27,680 --> 02:47:29,800 WE CAN CONNECT WITH YOU DIRECTLY 4431 02:47:29,800 --> 02:47:32,800 BUT YES YOU WOULD GO THROUGH IT 4432 02:47:32,800 --> 02:47:33,360 THAT WAY. 4433 02:47:33,360 --> 02:47:34,440 INITIAL REQUEST FOR 4434 02:47:34,440 --> 02:47:34,800 CONSULTATION. 4435 02:47:34,800 --> 02:47:35,880 >> I WILL MENTION AS WELL, THERE 4436 02:47:35,880 --> 02:47:38,840 ARE CLOSE TO 40 OTHER SITES NOW 4437 02:47:38,840 --> 02:47:41,400 THAT DO SOME VERSION OF THE 4438 02:47:41,400 --> 02:47:42,720 COMMUNITY ENGAGEMENT STUDIO 4439 02:47:42,720 --> 02:47:43,160 ACROSS THE COUNTRY. 4440 02:47:43,160 --> 02:47:44,160 SO IT MIGHT BE WORTH SEEING IF 4441 02:47:44,160 --> 02:47:45,400 YOUR OWN INSTITUTION MIGHT HAVE 4442 02:47:45,400 --> 02:47:47,080 A COMMUNITY ENGAGEMENT STUDIO 4443 02:47:47,080 --> 02:47:48,800 PROGRAM OR SOMETHING SIMILAR 4444 02:47:48,800 --> 02:47:50,680 THAT THEY COULD IMPLEMENT AS 4445 02:47:50,680 --> 02:47:51,280 WELL. 4446 02:47:51,280 --> 02:47:54,120 >> I'M PART OF NIH AND I THINK 4447 02:47:54,120 --> 02:47:58,720 WE WILL BE LOOKING AT NCATS TO 4448 02:47:58,720 --> 02:47:59,520 HELP US. 4449 02:47:59,520 --> 02:47:59,880 >> PERFECT. 4450 02:47:59,880 --> 02:48:02,440 YES, WE DID DO A DEMONSTRATION 4451 02:48:02,440 --> 02:48:04,040 STUDIO AT NCATS PRIOR TO COVID 4452 02:48:04,040 --> 02:48:07,080 SO WE CAME OUT AND DID A 4453 02:48:07,080 --> 02:48:07,720 DEMONSTRATION STUDIO AND IT WAS 4454 02:48:07,720 --> 02:48:08,000 WONDERFUL. 4455 02:48:08,000 --> 02:48:10,360 A GREAT EXPERIENCE FOR US. 4456 02:48:10,360 --> 02:48:17,640 >> SO YOU ALSO HAVE A QUESTION 4457 02:48:17,640 --> 02:48:17,840 FROM. 4458 02:48:17,840 --> 02:48:21,880 DO YOU WANT ME TO ASK THAT? 4459 02:48:21,880 --> 02:48:23,680 >> I CAN GIVE IT A TRY. 4460 02:48:23,680 --> 02:48:25,360 IT'S VERY INTERESTING. 4461 02:48:25,360 --> 02:48:30,520 THIS IS MARIA FROM MADISON, 4462 02:48:30,520 --> 02:48:30,880 WISCONSIN. 4463 02:48:30,880 --> 02:48:35,480 I'M VERY INTERESTED IN YOUR 4464 02:48:35,480 --> 02:48:36,040 GROUP STUDIOS. 4465 02:48:36,040 --> 02:48:37,800 BUT ONE OF THE KEYS THAT WE 4466 02:48:37,800 --> 02:48:41,400 ALWAYS HAVE WORKING FOR LATINAS 4467 02:48:41,400 --> 02:48:44,040 AND AFRICAN-AMERICANS AND OTHER 4468 02:48:44,040 --> 02:48:45,400 POPULATIONS IS CHILD CARE, 4469 02:48:45,400 --> 02:48:49,440 SIBLING CARE, BECAUSE USUALLY 4470 02:48:49,440 --> 02:48:50,920 MOMS ARRIVE WITH THE KIDS AND A 4471 02:48:50,920 --> 02:48:52,520 LOT OF OTHER KIDS AND WE TRY TO 4472 02:48:52,520 --> 02:48:56,560 BE AS WELCOME, TRYING TO FIGURE 4473 02:48:56,560 --> 02:48:58,640 OUT HOW TO DO IT IN A WAY THAT 4474 02:48:58,640 --> 02:49:00,520 WE COULD BE MORE LIKE FAMILY 4475 02:49:00,520 --> 02:49:01,680 OPPORTUNITY AND HAVE COLORING 4476 02:49:01,680 --> 02:49:03,080 AND THINGS LIKE THAT, BECAUSE 4477 02:49:03,080 --> 02:49:05,520 MORE LIKELY THAN NOT, IT'S A 4478 02:49:05,520 --> 02:49:11,760 MAJOR ISSUE THAT I HAVE OR HAVE 4479 02:49:11,760 --> 02:49:12,880 IN THE CENTERS TO BE PREPARED TO 4480 02:49:12,880 --> 02:49:15,600 RECEIVE A LOT OF PEOPLE 4481 02:49:15,600 --> 02:49:15,880 SOMETIMES. 4482 02:49:15,880 --> 02:49:16,240 >> ABSOLUTELY. 4483 02:49:16,240 --> 02:49:17,120 I THINK YOU ALREADY KNOW THE 4484 02:49:17,120 --> 02:49:17,680 ANSWER TO THIS. 4485 02:49:17,680 --> 02:49:18,840 YOU ALREADY SAID. 4486 02:49:18,840 --> 02:49:21,400 LIKE WHAT WE WOULD GENERALLY DO. 4487 02:49:21,400 --> 02:49:22,680 WE TRADITIONALLY HAVE BEEN DOING 4488 02:49:22,680 --> 02:49:23,120 THIS FOR 12 YEARS. 4489 02:49:23,120 --> 02:49:25,920 WE HAD STUDIOS WIA WIDE RANGE OF 4490 02:49:25,920 --> 02:49:27,360 DEMOGRAPHICS AND A LOT OF MOMS 4491 02:49:27,360 --> 02:49:28,680 HAVE PARTICIPATED. 4492 02:49:28,680 --> 02:49:30,280 WHEN WE WERE DOING IN-PERSON, 4493 02:49:30,280 --> 02:49:33,360 WHICH WE TRANSITIONED TO ONLINE 4494 02:49:33,360 --> 02:49:35,400 STUDIOS VIA ZOOM ABOUT TWO YEARS 4495 02:49:35,400 --> 02:49:35,560 AGO. 4496 02:49:35,560 --> 02:49:37,480 SO THAT HAS ELIMINATED A LOT OF 4497 02:49:37,480 --> 02:49:38,320 BARRIERS AND WE COULD TALK MORE 4498 02:49:38,320 --> 02:49:39,560 OFF LINE ABOUT THAT. 4499 02:49:39,560 --> 02:49:42,680 WE WERE DOING IN-PERSON STUDIOS 4500 02:49:42,680 --> 02:49:45,200 WE WERE FLEXIBLE AT OUR SITE. 4501 02:49:45,200 --> 02:49:46,160 EVERY INSTITUTION HANDLES IT 4502 02:49:46,160 --> 02:49:46,480 DIFFERENTLY. 4503 02:49:46,480 --> 02:49:47,720 WE ALLOWED MOMS TO BRING THEIR 4504 02:49:47,720 --> 02:49:48,880 KIDS WITH THEM. 4505 02:49:48,880 --> 02:49:50,040 WE HAVE DONE STUDIOS WITH MOMS 4506 02:49:50,040 --> 02:49:53,040 WHO WERE BREASTFEEDING, PROVIDE 4507 02:49:53,040 --> 02:49:54,240 SOME SNACKS AND SOME -- WHETHER 4508 02:49:54,240 --> 02:49:56,760 IT WAS COLORING BOOKS OR 4509 02:49:56,760 --> 02:49:57,440 WHATEVER IT MIGHT BE FOR OUR 4510 02:49:57,440 --> 02:50:00,880 SICKLE CELL COMMUNITY ONE MOM IN 4511 02:50:00,880 --> 02:50:02,120 PARTICULAR IS A CHAMPION WHOSE 4512 02:50:02,120 --> 02:50:03,760 SON ALWAYS CAME AND WE WOULD 4513 02:50:03,760 --> 02:50:05,360 ALWAYS PAUSE IN THE STUDIO AND 4514 02:50:05,360 --> 02:50:06,600 ASK, DO YOU HAVE ANYTHING YOU 4515 02:50:06,600 --> 02:50:07,120 WANT TO ADD? 4516 02:50:07,120 --> 02:50:09,320 BECAUSE HE WAS THE PERSON WHO 4517 02:50:09,320 --> 02:50:09,920 HAD SICKLE CELL. 4518 02:50:09,920 --> 02:50:11,200 SO WE AND OUR SITE JUST TRIED TO 4519 02:50:11,200 --> 02:50:13,200 BE REALLY FLEXIBLE AND AS YOU 4520 02:50:13,200 --> 02:50:15,280 SAID, REALLY COGNIZANT THAT WE 4521 02:50:15,280 --> 02:50:17,040 WERE GOING TO HAVE TO JUST 4522 02:50:17,040 --> 02:50:18,000 EMBRACE FAMILIES WHERE THEY WERE 4523 02:50:18,000 --> 02:50:21,320 AND BE FLEXIBLE AND I HAVE A 4524 02:50:21,320 --> 02:50:22,440 BACKGROUND IN SOCIAL WORK AND 4525 02:50:22,440 --> 02:50:23,240 DEVON IN SPECIAL EDUCATION SO WE 4526 02:50:23,240 --> 02:50:24,280 BOTH HAVE A LOT OF EXPERIENCE 4527 02:50:24,280 --> 02:50:25,400 WORKING WITH FAMILIES AND 4528 02:50:25,400 --> 02:50:25,720 CHILDREN. 4529 02:50:25,720 --> 02:50:29,400 SO THAT MADE IT A LOT EASIER FOR 4530 02:50:29,400 --> 02:50:33,400 US. 4531 02:50:33,400 --> 02:50:36,320 >> THERE IS A QUESTION. 4532 02:50:36,320 --> 02:50:41,360 DO YOU WANT TO COME OFF MUTE, 4533 02:50:41,360 --> 02:50:44,000 JENNIFER? 4534 02:50:44,000 --> 02:50:45,760 AND ASK YOUR QUESTION? 4535 02:50:45,760 --> 02:50:47,560 >> IT'S NOT ME. 4536 02:50:47,560 --> 02:50:47,960 >> OKAY, SORRY. 4537 02:50:47,960 --> 02:50:50,560 SO I CAN JUST READ THE QUESTION. 4538 02:50:50,560 --> 02:50:54,200 THIS IS FOR THE RECRUITMENT 4539 02:50:54,200 --> 02:50:55,000 STUDIO. 4540 02:50:55,000 --> 02:50:57,400 THE QUESTION IS, ARE THERE ANY 4541 02:50:57,400 --> 02:50:59,520 RECRUITMENT PRACTICES INCLUSIVE 4542 02:50:59,520 --> 02:51:03,760 OF FAMILIES AT THE POVERTY 4543 02:51:03,760 --> 02:51:03,960 LEVEL? 4544 02:51:03,960 --> 02:51:06,600 >> I WILL SPEAK REALLY QUICKLILY 4545 02:51:06,600 --> 02:51:09,000 AND THEN HAVE DEVON OR JASMINE 4546 02:51:09,000 --> 02:51:09,400 JUMP IN. 4547 02:51:09,400 --> 02:51:12,920 PARTICULARLY WHEN WE MOVE TO 4548 02:51:12,920 --> 02:51:13,520 REMOTE STUDIOS BUT EVEN 4549 02:51:13,520 --> 02:51:15,920 IN-PERSON, WE DO A LOT OF 4550 02:51:15,920 --> 02:51:16,920 RECRUITMENT VIA COMMUNITY-BASED 4551 02:51:16,920 --> 02:51:18,560 ORGANIZATIONS WHICH ALLOWS US TO 4552 02:51:18,560 --> 02:51:21,280 RECRUIT A WIDE DIVERSITY OF 4553 02:51:21,280 --> 02:51:22,800 INDIVIDUALS ACROSS THE SES 4554 02:51:22,800 --> 02:51:23,080 CONTINUUM. 4555 02:51:23,080 --> 02:51:24,560 SO OUR STUDIOS ARE CUSTOMIZED 4556 02:51:24,560 --> 02:51:26,560 FOR THE RESEARCHER OF INTEREST. 4557 02:51:26,560 --> 02:51:27,880 SO THEY TELL US, I KNOW OUR TEAM 4558 02:51:27,880 --> 02:51:30,040 WILL HAVE A REALLY DIFFICULT 4559 02:51:30,040 --> 02:51:33,480 TIME RECRUITING INDIVIDUALS WHO 4560 02:51:33,480 --> 02:51:34,080 ARE ADD ROAR BELOW THE POVERTY 4561 02:51:34,080 --> 02:51:34,280 LEVEL. 4562 02:51:34,280 --> 02:51:35,000 I'D LOVE TO HEAR FROM THAT 4563 02:51:35,000 --> 02:51:35,760 COMMUNITY. 4564 02:51:35,760 --> 02:51:37,240 THEN THAT IS WHERE WE FOCUS IN 4565 02:51:37,240 --> 02:51:38,720 OUR RECRUITMENT. 4566 02:51:38,720 --> 02:51:41,400 AND WE USUALLY WOULD FIND 4567 02:51:41,400 --> 02:51:43,240 INDIVIDUALS VIA SOCIAL MEDIA, 4568 02:51:43,240 --> 02:51:44,840 THROUGH COMMUNITY ORGANIZATIONS 4569 02:51:44,840 --> 02:51:46,200 WHO ALREADY PARTNER WITH AND 4570 02:51:46,200 --> 02:51:48,440 COLLABORATE AND PROVIDE SERVICES 4571 02:51:48,440 --> 02:51:49,200 TO THAT PARTICULAR DEMOGRAPHIC 4572 02:51:49,200 --> 02:51:50,200 OF FOLKS. 4573 02:51:50,200 --> 02:51:51,760 SO, WE WERE ABLE TO EASILY PULL 4574 02:51:51,760 --> 02:51:54,360 IN PEOPLE FROM A WIDE RANGE OF 4575 02:51:54,360 --> 02:51:55,880 BACKGROUNDS AND EXPERIENCES. 4576 02:51:55,880 --> 02:51:57,040 BUT DEVON, DO YOU WANT TO ADD A 4577 02:51:57,040 --> 02:51:59,640 COUPLE OF EXAMPLES? 4578 02:51:59,640 --> 02:51:59,960 >> FOR SURE. 4579 02:51:59,960 --> 02:52:01,160 I THINK TWO THINGS THAT 4580 02:52:01,160 --> 02:52:04,200 IMMEDIATELY COME TO MIND IS ONE, 4581 02:52:04,200 --> 02:52:04,600 THAT FLEXIBILITY. 4582 02:52:04,600 --> 02:52:06,120 SO WHEN WE'RE THINKING ABOUT 4583 02:52:06,120 --> 02:52:10,280 BRINGING IN FOLKS WHO HAVE OTHER 4584 02:52:10,280 --> 02:52:10,960 OBLIGATIONS BEING ABLE TO MEET 4585 02:52:10,960 --> 02:52:12,200 THEM AT THEIR TIME AND THAT 4586 02:52:12,200 --> 02:52:18,280 MIGHT NOT BE WHAT WE WOULD 4587 02:52:18,280 --> 02:52:18,920 CONSIDER -- MATED BE OUTSIDE OF 4588 02:52:18,920 --> 02:52:20,960 OUR COMFORT LEVEL BUT WE WANT TO 4589 02:52:20,960 --> 02:52:21,640 PRIORITIZE THEM BECAUSE THEY ARE 4590 02:52:21,640 --> 02:52:25,360 WORKING WITH US AND THEY ARE 4591 02:52:25,360 --> 02:52:28,240 MARGINALIZED COMMUNITY. 4592 02:52:28,240 --> 02:52:28,760 BEING FLEXIBLE. 4593 02:52:28,760 --> 02:52:31,720 WEEKENDS OR MEET THEM IN THE 4594 02:52:31,720 --> 02:52:32,760 EVENING AT 6 OR 7:00, THAT'S 4595 02:52:32,760 --> 02:52:34,040 WHEN WE DO IT. 4596 02:52:34,040 --> 02:52:36,040 A SECOND THING WOULD BE, BEING 4597 02:52:36,040 --> 02:52:37,000 VERY MINDFUL AND FLEXIBLE WITH 4598 02:52:37,000 --> 02:52:40,240 OUR COMPENSATION AND SHARING 4599 02:52:40,240 --> 02:52:41,280 WITH TEAMS ABOUT THAT 4600 02:52:41,280 --> 02:52:42,280 COMPENSATION AND WHAT THEY USE 4601 02:52:42,280 --> 02:52:43,960 FOR COMPENSATION. 4602 02:52:43,960 --> 02:52:45,840 SO WHETHER IT'S A GIFT CARD, 4603 02:52:45,840 --> 02:52:47,400 WHETHER IT'S CHECK OR CASH, 4604 02:52:47,400 --> 02:52:49,840 WHETHER IT'S PART OF THE 4605 02:52:49,840 --> 02:52:52,120 COMPENSATION IS SOMETHING TO 4606 02:52:52,120 --> 02:52:55,120 ENSURE THAT FOLKS HAVE ACCESS TO 4607 02:52:55,120 --> 02:52:57,080 RESOURCES IT'S JUST BEING REALLY 4608 02:52:57,080 --> 02:52:58,240 FLEXIBLE ABOUT THE NEEDS OF 4609 02:52:58,240 --> 02:53:00,280 THOSE COMMUNITIES AND THEN 4610 02:53:00,280 --> 02:53:01,360 STRUCTURING COMPENSATION AROUND 4611 02:53:01,360 --> 02:53:01,560 THAT. 4612 02:53:01,560 --> 02:53:05,120 AND WE HAVE SEEN THAT THAT WAS 4613 02:53:05,120 --> 02:53:05,760 PRETTY HELPFUL. 4614 02:53:05,760 --> 02:53:08,480 >> AND TO DEVON'S POINT, WE 4615 02:53:08,480 --> 02:53:09,400 CONDUCT STUDIOS IN THE SPACES 4616 02:53:09,400 --> 02:53:10,440 WHERE PEOPLE ARE ALREADY 4617 02:53:10,440 --> 02:53:10,760 COMFORTABLE. 4618 02:53:10,760 --> 02:53:12,160 SO IF THEY ARE ALREADY A PART OF 4619 02:53:12,160 --> 02:53:13,560 A GROUP, WHETHER WE DO IT AT A 4620 02:53:13,560 --> 02:53:15,160 SCHOOL OR COMMUNITY CENTER OR 4621 02:53:15,160 --> 02:53:16,440 HEALTH DEPARTMENT, WHEREVER THEY 4622 02:53:16,440 --> 02:53:18,320 ARE ALREADY GOING TO BE AND 4623 02:53:18,320 --> 02:53:18,960 THERE A FEEL COMFORTABLE AND AT 4624 02:53:18,960 --> 02:53:20,760 HOME SO WE DON'T HAVE TO TAKE 4625 02:53:20,760 --> 02:53:22,680 FOLKS OUT OF SPACES WHERE THEY 4626 02:53:22,680 --> 02:53:24,880 ALREADY ARE TRUSTED AND IT'S 4627 02:53:24,880 --> 02:53:29,360 EASY FOR THEM TO NAVIGATE. 4628 02:53:29,360 --> 02:53:29,800 *6. 4629 02:53:29,800 --> 02:53:35,240 >> SO THERE IS ANOTHER QUESTION 4630 02:53:35,240 --> 02:53:38,840 FROM TAMARA WHO IS HERE FROM THE 4631 02:53:38,840 --> 02:53:40,520 NATIONAL DOWN SYNDROME CONGRESS, 4632 02:53:40,520 --> 02:53:41,360 WHICH IS ONE OF THE PARTNERS ON 4633 02:53:41,360 --> 02:53:43,880 THE DOWN SYNDROME CONSORTIUM. 4634 02:53:43,880 --> 02:53:45,600 SO SHE IS ASKING, AND THIS IS 4635 02:53:45,600 --> 02:53:49,400 FOR ALL SPEAKERS, I THINK, 4636 02:53:49,400 --> 02:53:51,760 WHOMEVER WANTS TO RESPOND. 4637 02:53:51,760 --> 02:53:54,600 HOW CAN THE NATIONAL AND LOCAL 4638 02:53:54,600 --> 02:53:57,360 ORGANIZATIONS SERVING THE DOWN 4639 02:53:57,360 --> 02:53:59,440 SYNDROME COMMUNITY BETTER HELP 4640 02:53:59,440 --> 02:54:05,360 PROMOTE AND HELP WITH 4641 02:54:05,360 --> 02:54:15,200 RECRUITMENT? 4642 02:54:15,200 --> 02:54:15,800 >> THIS IS DR. HARTLEY. 4643 02:54:15,800 --> 02:54:17,200 I APPRECIATE THAT QUESTION. 4644 02:54:17,200 --> 02:54:21,760 ONE THING I ALWAYS APPRECIATE IS 4645 02:54:21,760 --> 02:54:23,640 IF ORGANIZATIONS REACH OUT 4646 02:54:23,640 --> 02:54:24,440 AND - EYE KNOW MS. AND MEMBERS 4647 02:54:24,440 --> 02:54:26,720 OF OUR TEAM ARE ALWAYS HAPPY TO 4648 02:54:26,720 --> 02:54:30,280 GIVE PRESENTATIONS OR TO HELP 4649 02:54:30,280 --> 02:54:30,880 PROVIDE EDUCATIONAL MATERIAL. 4650 02:54:30,880 --> 02:54:32,960 SO JUST NOT TO HESITATE TO REACH 4651 02:54:32,960 --> 02:54:36,200 OUT AND LET US KNOW WHAT 4652 02:54:36,200 --> 02:54:37,360 COMMUNITY -- WHAT YOUR COMMUNITY 4653 02:54:37,360 --> 02:54:38,840 WOULD BENEFIT FROM TO MAKE THAT 4654 02:54:38,840 --> 02:54:40,560 CONNECTION SO WE CAN JUST MEET 4655 02:54:40,560 --> 02:54:42,680 MEMBERS OF THE COMMUNITY YOU'RE 4656 02:54:42,680 --> 02:54:45,160 SERVING, GET TO KNOW YOUR 4657 02:54:45,160 --> 02:54:45,480 ORGANIZATION. 4658 02:54:45,480 --> 02:54:46,720 SO, I WOULD JUST SAY ONE THING I 4659 02:54:46,720 --> 02:54:48,880 LOVE IS IF YOU CAN HELP US 4660 02:54:48,880 --> 02:54:51,200 IDENTIFY ANY OPPORTUNITIES FOR 4661 02:54:51,200 --> 02:54:53,400 US TO PROVIDE SOME OF THAT 4662 02:54:53,400 --> 02:54:55,040 EDUCATION AND TO MEET MEMBERS OF 4663 02:54:55,040 --> 02:55:00,520 WHO YOU'RE SERVING. 4664 02:55:00,520 --> 02:55:01,120 >> AND THE NEXT QUESTION IS 4665 02:55:01,120 --> 02:55:01,400 RELATED. 4666 02:55:01,400 --> 02:55:10,520 SO SPECIAL OLYMPICS IS AGAIN 4667 02:55:10,520 --> 02:55:11,120 ANOTHER CONSOARED YUM PARTNER 4668 02:55:11,120 --> 02:55:13,040 BUT ALSO HAS A LOT OF REACH WITH 4669 02:55:13,040 --> 02:55:15,320 INDIVIDUALS, ESPECIALLY IN THE 4670 02:55:15,320 --> 02:55:17,000 DOWN SYNDROME SPACE. 4671 02:55:17,000 --> 02:55:21,080 WE HAVE HERE Mr. DAVE ID EGAN 4672 02:55:21,080 --> 02:55:22,920 WHO HAS -- I DON'T KNOW HOW MANY 4673 02:55:22,920 --> 02:55:24,360 HUNDREDS OF MEDALS FROM SPECIAL 4674 02:55:24,360 --> 02:55:26,400 OLYMPICS AND ALSO PART OF THE 4675 02:55:26,400 --> 02:55:26,680 CONSORTIUM. 4676 02:55:26,680 --> 02:55:29,280 SO JENNIFER'S QUESTION IS, ANY 4677 02:55:29,280 --> 02:55:33,400 RECRUITMENT HAPPENING AT SPECIAL 4678 02:55:33,400 --> 02:55:34,760 OLYMPIC STATE GAMES? 4679 02:55:34,760 --> 02:55:39,320 I KNOW THAT THEY ARE -- THE DOWN 4680 02:55:39,320 --> 02:55:40,080 SYNDROME PARTNER ON THE 4681 02:55:40,080 --> 02:55:42,520 CONSORTIUM AND WE MEET AT LEAST 4682 02:55:42,520 --> 02:55:45,360 ONCE IN PERSON IN CONJUNCTION 4683 02:55:45,360 --> 02:55:47,080 WITH NATIONAL DOWN SYNDROME 4684 02:55:47,080 --> 02:55:50,360 CONGRESS, ANNUAL CONVECTION AND 4685 02:55:50,360 --> 02:55:52,680 ALSO ONCE VIRTUALLY AND WE TRY 4686 02:55:52,680 --> 02:55:55,280 TO UPDATE, GET UPDATED ON THE 4687 02:55:55,280 --> 02:55:59,000 EVENTS THAT ALL THE CONSORTIUM 4688 02:55:59,000 --> 02:56:00,320 PARTNERS ARE POSTING OR 4689 02:56:00,320 --> 02:56:03,760 ORGANIZING AND TRY TO BE 4690 02:56:03,760 --> 02:56:04,040 AVAILABLE. 4691 02:56:04,040 --> 02:56:06,040 BUT I DON'T THINK WE HAVE -- WE 4692 02:56:06,040 --> 02:56:09,200 AT NIH HAVE ATTENDED ANY EVENT 4693 02:56:09,200 --> 02:56:11,880 THAT SPECIAL OLYMPICS HAS HOSTED 4694 02:56:11,880 --> 02:56:13,360 BUT WE WOULD -- I WOULD LOVE TO 4695 02:56:13,360 --> 02:56:16,120 IF THERE ARE EVENTS WE CAN 4696 02:56:16,120 --> 02:56:19,600 OUTREACH WHAT WE ARE DOING IN 4697 02:56:19,600 --> 02:56:23,760 THE DOWN SYNDROME SPACE. 4698 02:56:23,760 --> 02:56:25,360 ANYONE ELSE HAS HAD ANY 4699 02:56:25,360 --> 02:56:29,600 INTERACTIONS WITH SPECIAL 4700 02:56:29,600 --> 02:56:33,400 OLYMPIC FOR ADVERTISING, 4701 02:56:33,400 --> 02:56:33,680 RECRUITING? 4702 02:56:33,680 --> 02:56:36,800 >> SO OUR ABC-DS STUDY HERE AT 4703 02:56:36,800 --> 02:56:39,200 WISCONSIN WENT TO THE WISCONSIN 4704 02:56:39,200 --> 02:56:41,360 STATE SPECIAL OLYMPICS A FEW 4705 02:56:41,360 --> 02:56:41,800 MONTH BACK. 4706 02:56:41,800 --> 02:56:45,120 AND WE SET UP A TABLE AND IN 4707 02:56:45,120 --> 02:56:45,720 THERE WHAT WAS CALLED VICTORY 4708 02:56:45,720 --> 02:56:48,280 VILLAGE, IF YOU'RE FAMILIAR WITH 4709 02:56:48,280 --> 02:56:49,640 THE STATE SPECIAL OLYMPICS AT 4710 02:56:49,640 --> 02:56:49,800 ALL. 4711 02:56:49,800 --> 02:56:52,880 AND WE DID RECRUIT FROM 4712 02:56:52,880 --> 02:56:53,200 PARTICIPANTS. 4713 02:56:53,200 --> 02:56:54,840 AND WE DID HAVE SUCCESS THERE AS 4714 02:56:54,840 --> 02:56:55,040 WELL. 4715 02:56:55,040 --> 02:56:59,080 WE WERE ABLE TO RECRUIT AT LEAST 4716 02:56:59,080 --> 02:57:00,440 ONE THAT I'M CERTAIN WHO IS 4717 02:57:00,440 --> 02:57:01,920 GOING TO PARTICIPATE IN OUR 4718 02:57:01,920 --> 02:57:03,440 STUDY MOVING FORWARD. 4719 02:57:03,440 --> 02:57:04,560 AND A FEW OTHER POTENTIALS. 4720 02:57:04,560 --> 02:57:07,200 SO WE DID HAVE A GOOD EXPERIENCE 4721 02:57:07,200 --> 02:57:08,880 WITH OUR STATE HERE IN 4722 02:57:08,880 --> 02:57:09,400 WISCONSIN. 4723 02:57:09,400 --> 02:57:12,880 >> I CAN TELL YOU FROM A 4724 02:57:12,880 --> 02:57:16,520 PERSPECTIVE OF A MEDICAL PRIMARY 4725 02:57:16,520 --> 02:57:16,720 CARE. 4726 02:57:16,720 --> 02:57:19,880 WE COLLABORATE QUITE A BIT WITH 4727 02:57:19,880 --> 02:57:23,400 SPECIAL OLYMPICS AND OTHER 4728 02:57:23,400 --> 02:57:24,920 RECREATIONAL PROGRAMMING. 4729 02:57:24,920 --> 02:57:30,160 MANY OF THEM REQUIRE A MEDICAL 4730 02:57:30,160 --> 02:57:31,720 RELEASE. 4731 02:57:31,720 --> 02:57:36,160 SO WE ARE A GOOD MEMBER OF 4732 02:57:36,160 --> 02:57:36,880 PROVIDING THAT. 4733 02:57:36,880 --> 02:57:40,320 ANYONE WHO PARTICIPATES IN 4734 02:57:40,320 --> 02:57:42,880 SPECIAL OLYMPICS MUST HAVE A 4735 02:57:42,880 --> 02:57:45,400 MEDICAL RELEASE FORM SIGNED -- I 4736 02:57:45,400 --> 02:57:47,640 THINK IT'S EVERY OTHER YEAR. 4737 02:57:47,640 --> 02:57:50,880 SO, WE ARE VERY MUCH AWARE AND 4738 02:57:50,880 --> 02:57:53,480 USE THAT AS PART OF OUR 4739 02:57:53,480 --> 02:57:55,560 CONTINUITY OF CARE. 4740 02:57:55,560 --> 02:57:59,880 AND ABSOLUTELY UTILIZE IT AS A 4741 02:57:59,880 --> 02:58:02,000 RESOURCE FOR INDIVIDUALS TO GET 4742 02:58:02,000 --> 02:58:05,160 BACK AND SOCIALIZE AND BE 4743 02:58:05,160 --> 02:58:05,400 HEALTHY. 4744 02:58:05,400 --> 02:58:13,400 AND IT'S FINALLY AN IN-PERSON 4745 02:58:13,400 --> 02:58:13,800 PARTICIPATION NOW. 4746 02:58:13,800 --> 02:58:17,440 FOR A LONG TIME IT WAS NOT. 4747 02:58:17,440 --> 02:58:19,000 >> THANK YOU. 4748 02:58:19,000 --> 02:58:20,040 AND THEN, DR. ROSSER HAS A 4749 02:58:20,040 --> 02:58:23,120 COMMENT THAT THEY HAVE RECRUITED 4750 02:58:23,120 --> 02:58:24,480 IN GEORGIA WITH SPECIAL 4751 02:58:24,480 --> 02:58:24,880 OLYMPICS. 4752 02:58:24,880 --> 02:58:27,960 SO MAYBE WE CAN CONNECT OFF 4753 02:58:27,960 --> 02:58:30,920 LINE, BECAUSE I DO THINK THAT 4754 02:58:30,920 --> 02:58:35,160 SPECIAL OLYMPICS HAS THE 4755 02:58:35,160 --> 02:58:40,400 MEMBERSHIP AND THE FAMILIES THAT 4756 02:58:40,400 --> 02:58:41,400 PARTICIPATE. 4757 02:58:41,400 --> 02:58:44,000 WE HAVE NOT BEEN INVOLVED IN 4758 02:58:44,000 --> 02:58:45,720 DIRECT OUTREACH WITH THEM. 4759 02:58:45,720 --> 02:58:47,560 SO GOOD TO KNOW THAT WE CAN 4760 02:58:47,560 --> 02:58:50,760 REACH OUT TO YOU. 4761 02:58:50,760 --> 02:58:51,960 >> DEFINITELY. 4762 02:58:51,960 --> 02:58:52,560 >> ALL RIGHT. 4763 02:58:52,560 --> 02:58:55,680 SO, I DON'T SEE ANY OTHER 4764 02:58:55,680 --> 02:58:55,960 QUESTIONS. 4765 02:58:55,960 --> 02:58:58,760 WE WILL TAKE A 10-MINUTE BREAK. 4766 02:58:58,760 --> 02:59:02,600 PLEASE STRETCH YOUR LEGS, ARMS, 4767 02:59:02,600 --> 02:59:04,920 NECK, BACK. 4768 02:59:04,920 --> 02:59:06,520 AND LET'S BE BACK IN 10 MINUTES 4769 02:59:06,520 --> 02:59:10,000 SO THAT WOULD BE 3:20 P.M. 4770 02:59:10,000 --> 02:59:12,280 EASTERN TIME, FOR OUR LAST 4771 02:59:12,280 --> 02:59:15,400 SESSION, SESSION 6, WHICH WILL 4772 02:59:15,400 --> 02:59:20,000 BE MODERATED BY DR. STINSON. 4773 02:59:20,000 --> 02:59:26,480 SEE YOU ALL IN 10 MINUTES. 4774 02:59:26,480 --> 02:59:27,080 >>I'D LIKE TO WELCOME EVERYONE 4775 02:59:27,080 --> 02:59:29,280 BACK FOR THE BEGINNING OF 4776 02:59:29,280 --> 02:59:34,000 SESSION 6, LESSONS LEARNED IN 4777 02:59:34,000 --> 02:59:36,000 COMMUNITY ENGAGEMENT. 4778 02:59:36,000 --> 02:59:38,520 WE HAVE FOUR PRESENTERS. 4779 02:59:38,520 --> 02:59:42,600 FIRST PRESENTER WILL BE A 4780 02:59:42,600 --> 02:59:45,080 DOUBTER DOUBTER THE PRESIDENT OF 4781 02:59:45,080 --> 02:59:46,600 THE -- KATE DOUGHERTY THE 4782 02:59:46,600 --> 02:59:49,160 PRESIDENT OF THE NATIONAL DOWN 4783 02:59:49,160 --> 02:59:51,400 SYNDROME CONGRESS AND IS THE 4784 02:59:51,400 --> 02:59:52,440 OLDEST AND LARGEST ORGANIZATION 4785 02:59:52,440 --> 02:59:53,720 ON BEHALF OF INDIVIDUALS WITH 4786 02:59:53,720 --> 02:59:54,880 DOWN SYNDROME. 4787 02:59:54,880 --> 02:59:57,920 SHE IS ALSO THE PRESIDENT AND 4788 02:59:57,920 --> 03:00:01,320 FOUNDER OF DOWN COUNTY, A RURAL 4789 03:00:01,320 --> 03:00:03,840 NONPROFIT AWARENESS AND 4790 03:00:03,840 --> 03:00:05,320 EDUCATION INITIATIVE OPERATING 4791 03:00:05,320 --> 03:00:07,320 UNDER THE FUNDAMENTAL PRINCIPLES 4792 03:00:07,320 --> 03:00:10,360 THAT EVERY CHILD IS A GIFT, 4793 03:00:10,360 --> 03:00:13,280 EVERY CHILD CAN LEARN AND EVERY 4794 03:00:13,280 --> 03:00:14,840 CHILD LEARNS DIFFERENTLY. 4795 03:00:14,840 --> 03:00:17,240 HOW GREAT IS THAT? 4796 03:00:17,240 --> 03:00:17,520 FUN FACT. 4797 03:00:17,520 --> 03:00:22,480 SHE CURRENTLY COHOSTS A RADIO 4798 03:00:22,480 --> 03:00:23,800 SHOW THE TITLE I BELIEVE IS, 4799 03:00:23,800 --> 03:00:28,080 EVERYONE TALKING ABOUT 4800 03:00:28,080 --> 03:00:33,280 EVERYTHING ON WGEM105.1FM ON 4801 03:00:33,280 --> 03:00:34,640 SUNDAY MORNINGS IF YOU HAVE TO 4802 03:00:34,640 --> 03:00:35,760 BE IN THAT GEOGRAPHIC AREA AND 4803 03:00:35,760 --> 03:00:38,880 YOU CAN LISTEN TO IT YOU SHOULD 4804 03:00:38,880 --> 03:00:42,520 TUNE IN. 4805 03:00:42,520 --> 03:00:43,120 >> KATE DOUGHERTY: THANK YOU 4806 03:00:43,120 --> 03:00:43,640 VERY MUCH. 4807 03:00:43,640 --> 03:00:44,680 THANK YOU FOR HAVING ME. 4808 03:00:44,680 --> 03:00:47,640 I'M GOING TO DO I MY BEST TO 4809 03:00:47,640 --> 03:00:49,280 SPEAK SLOWLY AND NOT TALK WITH 4810 03:00:49,280 --> 03:00:51,880 MY HANDS BECAUSE WE ALL THAN 4811 03:00:51,880 --> 03:00:54,280 MESSES UP ZOOM BACKGROUNDS. 4812 03:00:54,280 --> 03:00:56,000 DOWN COUNTRY AND AND WHEN I 4813 03:00:56,000 --> 03:00:58,200 LIVE, IS ABOUT AS RURAL AS RURAL 4814 03:00:58,200 --> 03:00:58,960 CAN HUMANLY POSSIBLY BE. 4815 03:00:58,960 --> 03:01:03,560 AND I DON'T KNOW IF THE VIDEO 4816 03:01:03,560 --> 03:01:05,360 WILL ROLL OR NOT BUT IT ALL 4817 03:01:05,360 --> 03:01:06,960 BEGINS IN A RURAL COMMUNITY 4818 03:01:06,960 --> 03:01:09,160 ESSENTIALLY WITH THE DELIVERY OF 4819 03:01:09,160 --> 03:01:10,320 A DIAGNOSIS. 4820 03:01:10,320 --> 03:01:11,840 AND WHEN WE'RE TALKING ABOUT THE 4821 03:01:11,840 --> 03:01:13,320 DELIVERY OF A DIAGNOSIS, THERE 4822 03:01:13,320 --> 03:01:15,800 IS MANY THINGS THAT ARE SHARED. 4823 03:01:15,800 --> 03:01:17,280 HOWEVER, I GUARANTEE NO ONE TOLD 4824 03:01:17,280 --> 03:01:20,680 ME THAT MY 6-YEAR-OLD WITH DOWN 4825 03:01:20,680 --> 03:01:22,200 SYNDROME WOULD BE SHOEING A 4826 03:01:22,200 --> 03:01:22,640 HORSE. 4827 03:01:22,640 --> 03:01:25,280 THIS VIDEO IS A LITTLE OLD. 4828 03:01:25,280 --> 03:01:28,600 ELLIOT IS 14 NOW BUT WHILE WE 4829 03:01:28,600 --> 03:01:30,000 UNDERSTAND WE MEDICALLY HAVE TO 4830 03:01:30,000 --> 03:01:32,840 SHARE ALL THESE THINGS THAT MAY 4831 03:01:32,840 --> 03:01:35,520 OR MAY NOT GO WRONG AS PART OF 4832 03:01:35,520 --> 03:01:37,280 JOINING THE JOURNEY AND 4833 03:01:37,280 --> 03:01:38,760 CONNECTING COMMUNITIES, IT'S 4834 03:01:38,760 --> 03:01:41,280 REALLY IMPORTANT THAT WE HELP 4835 03:01:41,280 --> 03:01:45,280 PEOPLE, ESPECIALLY IN RURAL 4836 03:01:45,280 --> 03:01:48,200 AREAS, UNDERSTAND WHAT'S 4837 03:01:48,200 --> 03:01:49,760 POSSIBLE; BECAUSE ONE OF THE 4838 03:01:49,760 --> 03:01:51,320 WAYS WE KNOW IN RURAL 4839 03:01:51,320 --> 03:01:53,400 COMMUNITIES THAT WE CAN BEGIN TO 4840 03:01:53,400 --> 03:01:55,360 ENACT TRUE CHANGE -- AND IF YOU 4841 03:01:55,360 --> 03:01:57,800 GO TO THE NEXT SLIDE -- IS BY 4842 03:01:57,800 --> 03:01:59,880 USING SOMETHING CALLED POSITIVE 4843 03:01:59,880 --> 03:02:00,160 PRESSURE. 4844 03:02:00,160 --> 03:02:02,840 OR THAT'S WHAT WE CALL IT HERE 4845 03:02:02,840 --> 03:02:05,040 IN DOWN COUNTRY. 4846 03:02:05,040 --> 03:02:05,600 AND CREATING COMMUNITIES. 4847 03:02:05,600 --> 03:02:08,840 AND WHEN I SAY CREATING 4848 03:02:08,840 --> 03:02:09,920 COMMUNITIES, I DON'T KNOW IN A 4849 03:02:09,920 --> 03:02:11,560 RURAL AREA THAT IT'S EXACTLY THE 4850 03:02:11,560 --> 03:02:14,880 SAME AS WHAT IT LOOKS LIKE IN A 4851 03:02:14,880 --> 03:02:16,880 MORE METROPOLITAN AREA. 4852 03:02:16,880 --> 03:02:18,600 WHICH I THINK IS ONE OF THE 4853 03:02:18,600 --> 03:02:20,080 THINGS THAT WHEN WE LOOK AT WHAT 4854 03:02:20,080 --> 03:02:24,120 THIS LOOKS LIKE IN A RURAL AREA, 4855 03:02:24,120 --> 03:02:28,600 THERE IS A SIGNIFICANT LACK OF 4856 03:02:28,600 --> 03:02:29,960 EXPOSURE OVERALL, NOT JUST TO 4857 03:02:29,960 --> 03:02:31,440 INDIVIDUALS WITH DOWN SYNDROME 4858 03:02:31,440 --> 03:02:33,680 OR INDIVIDUALS WITH 4859 03:02:33,680 --> 03:02:36,280 DISABILITIES, BUT TO MANY OTHER 4860 03:02:36,280 --> 03:02:37,160 DEMOGRAPHICS AS WELL. 4861 03:02:37,160 --> 03:02:40,280 AND WHEN WE'RE TALKING RURAL 4862 03:02:40,280 --> 03:02:41,640 AREAS, MANY OF THE PEOPLE HAVE 4863 03:02:41,640 --> 03:02:45,240 LIVED THERE ALL THEIR LIVES. 4864 03:02:45,240 --> 03:02:48,160 AND SO IT'S NOT EXACTLY THE SAME 4865 03:02:48,160 --> 03:02:51,560 AS WHEN YOU GO INTO A 4866 03:02:51,560 --> 03:02:52,840 METROPOLITAN AREA AND YOU SNAP 4867 03:02:52,840 --> 03:02:55,520 YOUR FINGERS AND YOU SAY, WE'LL 4868 03:02:55,520 --> 03:02:56,720 JUST HAVE A VISION THERAPIST 4869 03:02:56,720 --> 03:02:57,320 COME IN. 4870 03:02:57,320 --> 03:02:59,560 OR WE'LL JUST HAVE THIS. 4871 03:02:59,560 --> 03:03:02,600 OR WE'LL JUST HAVE THAT. 4872 03:03:02,600 --> 03:03:06,600 IN MY CASE, IN THE ENTIRE 4873 03:03:06,600 --> 03:03:08,840 DEMOGRAPHIC OF THE TRISTATE 4874 03:03:08,840 --> 03:03:11,320 AREA, THERE ARE EXACTLY SEVEN 4875 03:03:11,320 --> 03:03:14,240 ADA SPECIALISTS. 4876 03:03:14,240 --> 03:03:17,000 IN ST. LOUIS, IF I WANT A VISION 4877 03:03:17,000 --> 03:03:18,640 THERAPIST, THERE IS A SIX MONTH 4878 03:03:18,640 --> 03:03:20,120 WAIT, 2 1/2 HOUR DRIVE. 4879 03:03:20,120 --> 03:03:23,040 SO WHEN WE TALK ABOUT IN RURAL 4880 03:03:23,040 --> 03:03:25,280 AREAS CREATING COMMUNITY AND 4881 03:03:25,280 --> 03:03:29,560 POSITIVE PRESSURE, WE MEAN WE 4882 03:03:29,560 --> 03:03:30,320 NEED TO INCLUDE EVERYONE AS PART 4883 03:03:30,320 --> 03:03:30,920 OF OUR STORY. 4884 03:03:30,920 --> 03:03:31,720 NEXT SLIDE. 4885 03:03:31,720 --> 03:03:37,320 AND WHEN I SAY THAT -- PLEASE -- 4886 03:03:37,320 --> 03:03:38,560 HOW DO WE DO THIS? 4887 03:03:38,560 --> 03:03:39,280 IT'S BY REACHING OUT. 4888 03:03:39,280 --> 03:03:42,200 WHEN I SAY REACHING OUT, I MEAN 4889 03:03:42,200 --> 03:03:43,800 IT'S TO COMMUNITY MEMBERS, IT'S 4890 03:03:43,800 --> 03:03:45,520 TO TEACHERS, IT'S TO THERAPISTS, 4891 03:03:45,520 --> 03:03:48,000 IT'S TO PEOPLE AND FAMILIES WITH 4892 03:03:48,000 --> 03:03:52,200 DOWN SYNDROME, IT'S TO CLINICS, 4893 03:03:52,200 --> 03:03:53,280 IT'S EVERYONE. 4894 03:03:53,280 --> 03:03:54,800 BECAUSE ONE OF THE VERY FIRST 4895 03:03:54,800 --> 03:03:56,280 THINGS WE HAVE TO UNDERSTAND 4896 03:03:56,280 --> 03:03:58,600 WHEN WE'RE TALKING ABOUT HOW WE 4897 03:03:58,600 --> 03:04:02,640 CAN REACH PEOPLE IN RURAL 4898 03:04:02,640 --> 03:04:04,720 AREAS -- AND GUYS, MY INTERNET 4899 03:04:04,720 --> 03:04:05,560 UP UNTIL THIS WEEK, WAS FADING 4900 03:04:05,560 --> 03:04:07,040 IN AND OUT FOR THE LAST THREE 4901 03:04:07,040 --> 03:04:07,240 WEEKS. 4902 03:04:07,240 --> 03:04:10,560 I WAS TERRIFIED FOR THIS 4903 03:04:10,560 --> 03:04:12,640 PRESENTATION. 4904 03:04:12,640 --> 03:04:13,640 LIKE, THE ISSUES FAMILIES ARE 4905 03:04:13,640 --> 03:04:16,400 DEALING WITH IN RURAL AREAS, 4906 03:04:16,400 --> 03:04:17,200 ESPECIALLY WHEN YOU START 4907 03:04:17,200 --> 03:04:21,280 TALKING ABOUT GOING DOWN GRAVEL 4908 03:04:21,280 --> 03:04:23,680 ROADS -- AND IT'S GREAT TO HAVE 4909 03:04:23,680 --> 03:04:25,440 TELEHEALTH OPTION OR TELETHERAPY 4910 03:04:25,440 --> 03:04:27,040 OPTIONS BUT GUESS WHAT? 4911 03:04:27,040 --> 03:04:28,080 ZOOM DOESN'T WORK IF YOU DON'T 4912 03:04:28,080 --> 03:04:31,480 HAVE A WORKING Wi-Fi 4913 03:04:31,480 --> 03:04:31,760 CONNECTION. 4914 03:04:31,760 --> 03:04:33,320 SO, THERE ARE MAJOR DIFFERENCES 4915 03:04:33,320 --> 03:04:35,760 HERE AND WHEN WE GO TO THE NEXT 4916 03:04:35,760 --> 03:04:36,800 SLIDE ONE OF THE THINGS WHEN 4917 03:04:36,800 --> 03:04:39,320 WE'RE TALKING ABOUT WAYS TO 4918 03:04:39,320 --> 03:04:39,960 CREATE COMMUNITY ENGAGEMENT, WE 4919 03:04:39,960 --> 03:04:43,720 ALSO HAVE TO FIRST LOOK AT EVEN 4920 03:04:43,720 --> 03:04:44,600 THE LANGUAGE. 4921 03:04:44,600 --> 03:04:48,400 SO, IN A METROPOLITAN AREA, IF I 4922 03:04:48,400 --> 03:04:50,680 USE THE TERM, SUPPORT, NOBODY 4923 03:04:50,680 --> 03:04:52,120 THINKS ANYTHING ABOUT IT. 4924 03:04:52,120 --> 03:04:54,640 YOU HAVE A WATER SUPPORT 4925 03:04:54,640 --> 03:04:56,480 SERVICE. 4926 03:04:56,480 --> 03:04:58,920 YOU HAVE VARIOUS SUPPORTS. 4927 03:04:58,920 --> 03:05:01,080 IT HAS ABSOLUTELY NO NEGATIVE 4928 03:05:01,080 --> 03:05:01,360 CONNOTATION. 4929 03:05:01,360 --> 03:05:05,120 IN A RURAL AREA, THERE IS NOT 4930 03:05:05,120 --> 03:05:05,360 SUPPORT. 4931 03:05:05,360 --> 03:05:07,120 AND SO EVEN SOMETHING AS SIMPLE 4932 03:05:07,120 --> 03:05:11,680 AS THAT WORD, LET'S SAY A DOWN 4933 03:05:11,680 --> 03:05:14,080 SYNDROME SUPPORT GROUP, HAS A 4934 03:05:14,080 --> 03:05:15,080 NEGATIVE CONNOTATION BECAUSE ONE 4935 03:05:15,080 --> 03:05:17,320 OF THE INSTANT FEEDBACKS THAT 4936 03:05:17,320 --> 03:05:18,760 YOU'LL VERY OFTEN GET FROM A 4937 03:05:18,760 --> 03:05:21,280 RURAL AREA IS I DON'T NEED 4938 03:05:21,280 --> 03:05:22,480 ANYBODY'S HELP. 4939 03:05:22,480 --> 03:05:23,520 I DON'T NEED THAT SUPPORT. 4940 03:05:23,520 --> 03:05:26,000 HOWEVER, YOU RENAME THAT EXACT 4941 03:05:26,000 --> 03:05:30,520 SAME GROUP WITH THE EXACT SAME 4942 03:05:30,520 --> 03:05:32,240 FUNCTION, DOWN SYNDROME FRIENDS 4943 03:05:32,240 --> 03:05:33,120 AND FAMILY GROUP, YOU WILL HAVE 4944 03:05:33,120 --> 03:05:36,280 50 PEOPLE SHOW UP. 4945 03:05:36,280 --> 03:05:37,880 IT'S HOW -- THERE IS A DIFFERENT 4946 03:05:37,880 --> 03:05:39,720 MINDSET WHEN YOU'RE LOOKING AT A 4947 03:05:39,720 --> 03:05:42,440 RURAL VERSUS METROPOLITAN 4948 03:05:42,440 --> 03:05:42,680 DYNAMIC. 4949 03:05:42,680 --> 03:05:44,880 AND SO WHEN YOU'RE LOOKING AT 4950 03:05:44,880 --> 03:05:46,000 THAT, YOU HAVE TO DEFINE YOUR 4951 03:05:46,000 --> 03:05:47,240 RURAL COMMUNITY. 4952 03:05:47,240 --> 03:05:49,280 MY RURAL COMMUNITY IN MISSOURI, 4953 03:05:49,280 --> 03:05:51,640 ILLINOIS AND IOWA RIGHT ON THREE 4954 03:05:51,640 --> 03:05:52,280 STATE LINES IS DIFFERENT FROM 4955 03:05:52,280 --> 03:05:54,000 WHAT YOU'RE GOING TO FIND IN A 4956 03:05:54,000 --> 03:05:58,400 RURAL COMMUNITY IN TEXAS. 4957 03:05:58,400 --> 03:05:59,000 HOWEVER WHEN YOU START LOOKING 4958 03:05:59,000 --> 03:06:00,760 IN THESE RURAL COMMUNITIES, AND 4959 03:06:00,760 --> 03:06:01,840 IN THESE DIFFERENT DEMOGRAPHICS, 4960 03:06:01,840 --> 03:06:04,120 ONE OF THE THINGS YOU'RE VERY 4961 03:06:04,120 --> 03:06:06,440 OFTEN GOING TO FIND IS THAT WAIT 4962 03:06:06,440 --> 03:06:10,120 A SECOND, WHEN YOU LOOK AROUND, 4963 03:06:10,120 --> 03:06:11,080 VERY OFTEN THERE AREN'T MANY 4964 03:06:11,080 --> 03:06:14,440 PEOPLE WITH DOWN SYNDROME 4965 03:06:14,440 --> 03:06:14,680 AROUND. 4966 03:06:14,680 --> 03:06:19,200 AND SO, HOW ALONE DOES THAT MAKE 4967 03:06:19,200 --> 03:06:19,520 PEOPLE FEEL? 4968 03:06:19,520 --> 03:06:22,560 BUT THE REALITY IS, THERE ARE SO 4969 03:06:22,560 --> 03:06:25,160 MANY MORE PEOPLE THAT ARE 4970 03:06:25,160 --> 03:06:26,880 FAMILIES AND CHILDREN AND ADULTS 4971 03:06:26,880 --> 03:06:27,680 WITH DOWN SYNDROME, TRULY ARE 4972 03:06:27,680 --> 03:06:28,440 NEVER ALONE. 4973 03:06:28,440 --> 03:06:31,640 BUT YOU HAVE TO CREATE THE 4974 03:06:31,640 --> 03:06:32,000 COMMUNITY. 4975 03:06:32,000 --> 03:06:33,280 ONE OF THE WAYS WE HAVE TO DO 4976 03:06:33,280 --> 03:06:35,320 THAT IS BREAKDOWN THE BARRIERS 4977 03:06:35,320 --> 03:06:37,320 BY WHICH WE SELF ISOLATE 4978 03:06:37,320 --> 03:06:39,400 OURSELVES AND WE SAY, NOBODY 4979 03:06:39,400 --> 03:06:41,280 COULD EVER UNDERSTAND BECAUSE I 4980 03:06:41,280 --> 03:06:42,760 HAVE A CHILD OR A ADULT WITH 4981 03:06:42,760 --> 03:06:43,280 DOWN SYNDROME. 4982 03:06:43,280 --> 03:06:48,200 AND THEY DON'T HAVE THAT SAME 4983 03:06:48,200 --> 03:06:48,560 EXPERIENCE. 4984 03:06:48,560 --> 03:06:49,680 IT'S NOT NECESSARY. 4985 03:06:49,680 --> 03:06:52,000 NOR WOULD I SAY IT'S REALISTIC 4986 03:06:52,000 --> 03:06:53,880 TO EXPECT EVERY HUMAN WHO COMES 4987 03:06:53,880 --> 03:06:54,840 CONTACT WITH YOU TO HAVE THE 4988 03:06:54,840 --> 03:06:56,960 SAME LEVEL OF EXPERIENCE OR 4989 03:06:56,960 --> 03:07:00,000 EXPOSURE, NOT JUST TO DOWN 4990 03:07:00,000 --> 03:07:00,800 SYNDROME, BUT TO INDIVIDUALS 4991 03:07:00,800 --> 03:07:02,400 WITH DISABILITIES AS A WHOLE. 4992 03:07:02,400 --> 03:07:03,800 BUT THAT'S ONE OF THE WAYS WE 4993 03:07:03,800 --> 03:07:06,280 CAN BEGIN TO BREAKDOWN THE 4994 03:07:06,280 --> 03:07:07,360 BARRIERS IS BY BRINGING OUR 4995 03:07:07,360 --> 03:07:09,280 FRIENDS AND OUR FAMILY AND 4996 03:07:09,280 --> 03:07:13,280 BEGINNING THAT BASELINE LEVEL OF 4997 03:07:13,280 --> 03:07:17,080 EDUCATION AND EXPOSURE AND QUITE 4998 03:07:17,080 --> 03:07:17,680 FRANKLY, MY ENTIRE GROUP MAKES 4999 03:07:17,680 --> 03:07:19,280 FUN OF ME BECAUSE I VERY 5000 03:07:19,280 --> 03:07:22,240 FREQUENTLY SAY, MAKE IT PRETTY! 5001 03:07:22,240 --> 03:07:23,320 MAKE IT BEAUTIFUL! 5002 03:07:23,320 --> 03:07:24,200 MAKE IT FUN! 5003 03:07:24,200 --> 03:07:25,920 BECAUSE ONE OF THE THINGS WITHIN 5004 03:07:25,920 --> 03:07:27,200 THE DISABILITY COMMUNITY AS A 5005 03:07:27,200 --> 03:07:29,480 WHOLE HISTORICALLY WE HAVE DONE, 5006 03:07:29,480 --> 03:07:30,760 IS WE HAVEN'T MADE IT PRETTY. 5007 03:07:30,760 --> 03:07:32,600 WE HAVEN'T MADE IT FUN. 5008 03:07:32,600 --> 03:07:35,960 WE HAVE MADE IT INFORMATIVE. 5009 03:07:35,960 --> 03:07:37,840 WE'VE MADE IT SERIOUS. 5010 03:07:37,840 --> 03:07:38,880 WE'VE MADE IT WHERE WE -- WE 5011 03:07:38,880 --> 03:07:41,840 HAVEN'T MADE IT FUN. 5012 03:07:41,840 --> 03:07:42,640 WHEN WE MAKE THINGS FUN, WHEN WE 5013 03:07:42,640 --> 03:07:44,040 MAKE THINGS BEAUTIFUL, WHEN WE 5014 03:07:44,040 --> 03:07:45,640 MAKE THINGS PRETTY, WHEN WE 5015 03:07:45,640 --> 03:07:49,280 CELEBRATE THE JOY THAT IS THAT 5016 03:07:49,280 --> 03:07:50,080 EXTRA CHROMOSOME, IT'S 5017 03:07:50,080 --> 03:07:52,360 ATTRACTIVE TO FAMILIES. 5018 03:07:52,360 --> 03:07:55,840 WHEN YOU SHOW ELLIOT SHOWING A 5019 03:07:55,840 --> 03:07:57,640 HORSE, WHEN YOU SHOW MY ADORABLE 5020 03:07:57,640 --> 03:07:59,360 LITTLE GIRL HERE ON A FERRIS 5021 03:07:59,360 --> 03:08:01,320 WHEEL RIDE, DON'T YOU WANT TO 5022 03:08:01,320 --> 03:08:03,240 HOP IN AND HELP HER AND LEARN 5023 03:08:03,240 --> 03:08:05,480 MORE AND BECOME HER FRIEND? 5024 03:08:05,480 --> 03:08:06,880 WHEN YOU'RE TALKING ABOUT 5025 03:08:06,880 --> 03:08:09,160 CREATING COMMUNITIES AND TALKING 5026 03:08:09,160 --> 03:08:09,680 ABOUT HUE TO GET FAMILIES 5027 03:08:09,680 --> 03:08:10,920 INVOLVED IN RESEARCH AND HOW YOU 5028 03:08:10,920 --> 03:08:14,160 GET THESE THINGS, YOU BEGIN TO 5029 03:08:14,160 --> 03:08:15,960 THOUGH THEM WHAT IS POSSIBLE. 5030 03:08:15,960 --> 03:08:19,360 AND I UNDERSTAND, PLEASE, NEXT 5031 03:08:19,360 --> 03:08:20,880 SLIDE -- THAT ALL OF OUR 5032 03:08:20,880 --> 03:08:21,800 INDIVIDUALS HAVE DIFFERENT 5033 03:08:21,800 --> 03:08:22,920 LEVELS OF WHAT IS POSSIBLE. 5034 03:08:22,920 --> 03:08:25,160 BUT ONE OF THE THINGS IN RURAL 5035 03:08:25,160 --> 03:08:28,720 AREAS WE'RE LACKING IS THE 5036 03:08:28,720 --> 03:08:30,440 EXPOSURE, EXPERIENCES AND 5037 03:08:30,440 --> 03:08:30,760 PERSPECTIVES. 5038 03:08:30,760 --> 03:08:33,000 AND THOSE EXPOSURES, EXPERIENCES 5039 03:08:33,000 --> 03:08:34,640 AND PERSPECTIVES ALLOTTEDDER AND 5040 03:08:34,640 --> 03:08:36,280 CHANGE LIVES AND THE TRAJECTORY 5041 03:08:36,280 --> 03:08:38,040 OF HOW WE VIEW INDIVIDUALS AND 5042 03:08:38,040 --> 03:08:39,160 DISABILITY AND RESEARCH AND 5043 03:08:39,160 --> 03:08:41,360 MEDICAL AND EDUCATIONAL 5044 03:08:41,360 --> 03:08:42,120 POSSIBILITIES AS A WHOLE. 5045 03:08:42,120 --> 03:08:46,200 NEXT SLIDE, PLEASE. 5046 03:08:46,200 --> 03:08:47,200 THIS IS RUTH. 5047 03:08:47,200 --> 03:08:52,640 RUTH IS ONE OF MY BOARD MEMBERS 5048 03:08:52,640 --> 03:08:53,120 GRANDMOTHER'S SISTERS. 5049 03:08:53,120 --> 03:08:55,800 RULE WAS BORN IN 1930 ROCKING AN 5050 03:08:55,800 --> 03:08:56,240 EXTRA CHROMOSOME. 5051 03:08:56,240 --> 03:09:00,840 SHE ACTUALLY LIVED UNTIL 2001. 5052 03:09:00,840 --> 03:09:04,240 UNFORTUNATELY, HER SISTER, WHEN 5053 03:09:04,240 --> 03:09:05,200 HER -- MY BOARD MEMBER'S 5054 03:09:05,200 --> 03:09:08,120 GRANDMOTHER AND RUTH WENT TO 5055 03:09:08,120 --> 03:09:11,040 SCHOOL, RUTH WAS NOT ALLOWED TO 5056 03:09:11,040 --> 03:09:11,640 ATTEND SCHOOL. 5057 03:09:11,640 --> 03:09:13,520 AND SO, SHE STAYED HOME. 5058 03:09:13,520 --> 03:09:17,320 SHE STAYED HOME ON THE FAMILY 5059 03:09:17,320 --> 03:09:17,520 FARM. 5060 03:09:17,520 --> 03:09:18,400 SHE WAS FULLY INCLUDED IN 5061 03:09:18,400 --> 03:09:19,080 EVERYTHING. 5062 03:09:19,080 --> 03:09:21,080 AND MY BOARD MEMBER'S 5063 03:09:21,080 --> 03:09:24,200 GRANDMOTHER WHO IS 88, MOURNS TO 5064 03:09:24,200 --> 03:09:26,080 THIS DAY THE FACT HER SISTER 5065 03:09:26,080 --> 03:09:26,800 DIDN'T GET TO SHARE THE SAME 5066 03:09:26,800 --> 03:09:28,440 LIFE EXPERIENCES SHE DID. 5067 03:09:28,440 --> 03:09:30,440 AND THEY ARE BOTH PASSIONATE AND 5068 03:09:30,440 --> 03:09:31,920 ACTIVELY INVOLVED IN THIS 5069 03:09:31,920 --> 03:09:34,520 COMMUNITY, QUITE FRANKLY BECAUSE 5070 03:09:34,520 --> 03:09:34,760 OF RUTH. 5071 03:09:34,760 --> 03:09:37,280 THE NEXT SLIDE IS A GENTLEMAN 5072 03:09:37,280 --> 03:09:41,640 BY -- A KIDDO BY THE NAME OF 5073 03:09:41,640 --> 03:09:41,840 CLINT. 5074 03:09:41,840 --> 03:09:42,600 CLINT WAS THE VERY FIRST CHILD 5075 03:09:42,600 --> 03:09:43,400 IN THE STATE OF MISSOURI TO BE 5076 03:09:43,400 --> 03:09:45,280 RELEASED FROM A HOSPITAL NICU 5077 03:09:45,280 --> 03:09:47,880 SETTING TO A HOME. 5078 03:09:47,880 --> 03:09:48,680 CLINT LIVED ONE MILE FROM ME. 5079 03:09:48,680 --> 03:09:51,600 HIS MOM, HE WAS BORN IN 1980 5080 03:09:51,600 --> 03:09:54,960 WHEN I WAS 6 YEARS OLD. 5081 03:09:54,960 --> 03:09:55,600 HE WAS SUPPOSED TO LIVE 9 5082 03:09:55,600 --> 03:09:56,200 MINUTES. 5083 03:09:56,200 --> 03:09:57,040 HE LIVED 9 YEARS. 5084 03:09:57,040 --> 03:09:59,240 I'M 48 YEARS OLD AND THERE IS 5085 03:09:59,240 --> 03:10:02,120 NOT A DAY THAT GOES BY THAT I 5086 03:10:02,120 --> 03:10:03,440 DON'T THINK ABOUT CLINT BECAUSE 5087 03:10:03,440 --> 03:10:05,480 I WAS LUCKY ENOUGH TO HAVE A 5088 03:10:05,480 --> 03:10:08,200 MOTHER WHO EXPOSED ME TO A CHILD 5089 03:10:08,200 --> 03:10:10,720 WHO WAS NOT VERBAL, WHO NEVER 5090 03:10:10,720 --> 03:10:13,240 TOOK A BREATH ON HIS OWN, WHO 5091 03:10:13,240 --> 03:10:14,160 SMILED AND HAD THE MOST GORGEOUS 5092 03:10:14,160 --> 03:10:16,600 EYES I EVER SEEN IN MY ENTIRE 5093 03:10:16,600 --> 03:10:16,800 LIFE. 5094 03:10:16,800 --> 03:10:22,720 AND I WOULD ASK MY MOM WHY JANE 5095 03:10:22,720 --> 03:10:24,880 WOULD CRY SOMETIMES? 5096 03:10:24,880 --> 03:10:25,560 SHE WOULD SAY JANE JUST WANTS 5097 03:10:25,560 --> 03:10:27,960 CLIN TO BE INCLUDED AND PEOPLE 5098 03:10:27,960 --> 03:10:28,440 DON'T UNDERSTAND THAT. 5099 03:10:28,440 --> 03:10:31,000 YOU HAVE TO REMEMBER 1980, WE 5100 03:10:31,000 --> 03:10:31,480 WEREN'T VERY COOL WITH 5101 03:10:31,480 --> 03:10:32,200 INDIVIDUALS WITH DISABILITIES. 5102 03:10:32,200 --> 03:10:34,800 BUT THAT EXPOSURE FOR EVER 5103 03:10:34,800 --> 03:10:36,840 ALTERED HOW I VIEWED CHILDREN 5104 03:10:36,840 --> 03:10:38,880 AND ADULTS WITH DISABILITIES. 5105 03:10:38,880 --> 03:10:41,320 SO I DIDN'T RECOGNIZE UNTIL MY 5106 03:10:41,320 --> 03:10:45,120 OWN SON WAS BORN, WE STILL HAVE 5107 03:10:45,120 --> 03:10:45,640 MANY PEOPLE WHO FEAR OUR 5108 03:10:45,640 --> 03:10:49,360 CHILDREN AND ADULTS WITH DOWN 5109 03:10:49,360 --> 03:10:49,600 SYNDROME. 5110 03:10:49,600 --> 03:10:51,160 AND THAT FEAR BY OTHERS VERY 5111 03:10:51,160 --> 03:10:53,280 OFTEN KEEPS, ESPECIALLY OUR 5112 03:10:53,280 --> 03:10:55,240 RURAL FAMILIES, FROM CHOOSING TO 5113 03:10:55,240 --> 03:10:59,960 PARTICIPATE IN MANY OF THE 5114 03:10:59,960 --> 03:11:01,880 RESEARCH THAT COULD POTENTIALLY 5115 03:11:01,880 --> 03:11:03,040 ALTER AND HELP IMPROVE THE 5116 03:11:03,040 --> 03:11:06,160 QUALITY OF THEIR LIVES. 5117 03:11:06,160 --> 03:11:09,000 NEXT SLIDE. 5118 03:11:09,000 --> 03:11:09,800 PLEASE. 5119 03:11:09,800 --> 03:11:12,080 IF WE CAN FULLY BEGIN TO 5120 03:11:12,080 --> 03:11:13,240 UNDERSTAND THE POWER OF EXPOSURE 5121 03:11:13,240 --> 03:11:18,080 TO OUR KIDS, WE CAN CAN BEGIN TO 5122 03:11:18,080 --> 03:11:18,680 ERADICATE THE FEAR OF STUDIES. 5123 03:11:18,680 --> 03:11:20,160 AND THEY ARE THERE. 5124 03:11:20,160 --> 03:11:23,360 THE MISCONCEPTIONS ABOUND. 5125 03:11:23,360 --> 03:11:24,080 WHEN I WAS TALKING TO JANE TO 5126 03:11:24,080 --> 03:11:28,600 FIND OUT EXACTLY WHAT YEAR CLINT 5127 03:11:28,600 --> 03:11:29,240 WAS BORN BACK IN 1980, SHE ASKED 5128 03:11:29,240 --> 03:11:31,240 ME IF I EVER SPOKE ABOUT BRUCE. 5129 03:11:31,240 --> 03:11:32,480 BRUCE IS A GENTLEMAN WHO 5130 03:11:32,480 --> 03:11:35,120 HAPPENED TO HAVE DOWN SYNDROME. 5131 03:11:35,120 --> 03:11:35,840 HIS 90-YEAR-OLD MOTHER FELL AND 5132 03:11:35,840 --> 03:11:37,120 BROKE HER HIP. 5133 03:11:37,120 --> 03:11:39,480 THEY BOTH WENT TO OUR LOCAL 5134 03:11:39,480 --> 03:11:40,400 NURSING HOME. 5135 03:11:40,400 --> 03:11:44,160 THEY CALLED ME AND SAID, WE 5136 03:11:44,160 --> 03:11:44,560 DON'T UNDERSTAND. 5137 03:11:44,560 --> 03:11:45,160 WE HAVE GOT STAFF THAT ARE A 5138 03:11:45,160 --> 03:11:45,520 LITTLE NERVOUS. 5139 03:11:45,520 --> 03:11:48,120 AND I'M LIKE NERVOUS OF BRUCE, 5140 03:11:48,120 --> 03:11:48,520 WHY? 5141 03:11:48,520 --> 03:11:49,880 BECAUSE BRUCE WEIGHED ABOUT 85 5142 03:11:49,880 --> 03:11:52,640 POUNDS AND LUGGING AROUND AN 5143 03:11:52,640 --> 03:11:53,240 OXYGEN TANK. 5144 03:11:53,240 --> 03:11:54,680 AND AS I WAS SPEAKING, THEY SAID 5145 03:11:54,680 --> 03:11:56,440 EVERY DAY WHEN THE STAFF GOES 5146 03:11:56,440 --> 03:11:58,920 AND HANGS UP THE BULLETIN, HE 5147 03:11:58,920 --> 03:12:00,960 FOLLOWS THEM OVER THERE AND IT 5148 03:12:00,960 --> 03:12:03,600 MAKES THEM EXTREMELY NERVOUS. 5149 03:12:03,600 --> 03:12:05,960 TO WHICH MY RESPONSE WAS, YOU 5150 03:12:05,960 --> 03:12:06,960 ARE AWARE BRUCE CAN READ, 5151 03:12:06,960 --> 03:12:07,280 CORRECT? 5152 03:12:07,280 --> 03:12:08,240 THEY SAID, WHAT? 5153 03:12:08,240 --> 03:12:10,320 WE DIDN'T KNOW THAT WAS 5154 03:12:10,320 --> 03:12:10,600 POSSIBLE. 5155 03:12:10,600 --> 03:12:11,520 I SAID, YES, BRUCE CAN READ. 5156 03:12:11,520 --> 03:12:13,640 HE LIKES TO READ THE BIBLE QUITE 5157 03:12:13,640 --> 03:12:18,480 FREQUENTLY AND HE CAN TELL YOU 5158 03:12:18,480 --> 03:12:19,120 ALL OF THE KLANS OF SCOTLAND AND 5159 03:12:19,120 --> 03:12:20,200 IRELAND IF YOU ASK HIM. 5160 03:12:20,200 --> 03:12:21,400 PERHAPS HE HE'S GOING TO THE 5161 03:12:21,400 --> 03:12:23,040 BULLETIN BOARD TO FIND OUT WHAT 5162 03:12:23,040 --> 03:12:24,600 ACTIVITIES ARE GOING ON IN THE 5163 03:12:24,600 --> 03:12:26,360 NURSING HOME. 5164 03:12:26,360 --> 03:12:28,960 HAS HE BEEN ATTENDING? 5165 03:12:28,960 --> 03:12:29,240 YES, HE HAS. 5166 03:12:29,240 --> 03:12:29,880 THESE ARE JUST SOME EXAMPLES OF 5167 03:12:29,880 --> 03:12:33,080 THE OUTDATED MISCONCEPTIONS AND 5168 03:12:33,080 --> 03:12:36,200 THE FEAR THAT IF YOU LACK 5169 03:12:36,200 --> 03:12:38,200 EXPOSURE, THESE THINGS INTERFERE 5170 03:12:38,200 --> 03:12:40,800 BECAUSE THIS IS WHAT OUR 5171 03:12:40,800 --> 03:12:42,120 FAMILIES OF ADULTS AND CHILDREN 5172 03:12:42,120 --> 03:12:43,440 WITH DOWN SYNDROME ARE DEALING 5173 03:12:43,440 --> 03:12:44,440 WITH ON A DAILY BASIS. 5174 03:12:44,440 --> 03:12:50,520 NEXT SLIDE, PLEASE. 5175 03:12:50,520 --> 03:12:51,680 THE BIGGEST BARRIERS IN RURAL 5176 03:12:51,680 --> 03:12:53,320 AREAS TO THIS DAY ARE 5177 03:12:53,320 --> 03:12:56,040 SEGREGATION, ISOLATION, LACK OF 5178 03:12:56,040 --> 03:12:58,040 EXPOSURE, LACK OF ACCESS TO BEST 5179 03:12:58,040 --> 03:13:00,680 PRACTICE ACROSS ALL AREAS, LACK 5180 03:13:00,680 --> 03:13:03,920 OF INCLUSION, HOWEVER, IF YOU 5181 03:13:03,920 --> 03:13:06,440 CAN CREATE A COMMUNITY AND 5182 03:13:06,440 --> 03:13:08,080 CULTURE IN THE RURAL AREA 5183 03:13:08,080 --> 03:13:10,200 BECAUSE YOU'RE EXPOSING AND 5184 03:13:10,200 --> 03:13:11,680 GETTING THE KIDS AND THE ADULTS 5185 03:13:11,680 --> 03:13:13,440 AROUND YOU WILL BECOME YOUR 5186 03:13:13,440 --> 03:13:15,320 STRONGEST ADVOCATES FOR YOUR 5187 03:13:15,320 --> 03:13:16,880 CHILDREN WITH DOWN SYNDROME. 5188 03:13:16,880 --> 03:13:21,600 NEXT SLIDE, PLEASE. 5189 03:13:21,600 --> 03:13:24,000 IF LIFE IS ABOUT PERSPECTIVE, 5190 03:13:24,000 --> 03:13:26,080 MANY TIMES OUR PERSPECTIVE IS 5191 03:13:26,080 --> 03:13:28,400 SKEWED WITHOUT OUR KNOWLEDGE. 5192 03:13:28,400 --> 03:13:30,720 PERSPECTIVE IS BASED UPON OUR 5193 03:13:30,720 --> 03:13:32,400 EXPERIENCES, OUR JOURNEYS, OUR 5194 03:13:32,400 --> 03:13:37,320 EXPOSURES THROUGH LIFE. 5195 03:13:37,320 --> 03:13:41,280 NEXT SLIDE, PLEASE. 5196 03:13:41,280 --> 03:13:44,320 BACK UP, PLEASE. 5197 03:13:44,320 --> 03:13:45,280 ONE OF THE THINGS THAT HAPPENS 5198 03:13:45,280 --> 03:13:46,800 THAT I HEAR FREQUENTLY WHEN I GO 5199 03:13:46,800 --> 03:13:48,440 IN AND MEET WITH THE SCHOOL OR 5200 03:13:48,440 --> 03:13:50,680 IN A LOCAL AREA, AND WE'RE 5201 03:13:50,680 --> 03:13:52,040 DISCUSSING BASIC ACCOMMODATIONS 5202 03:13:52,040 --> 03:13:53,040 OR POSSIBILITIES FOR CHILDREN 5203 03:13:53,040 --> 03:13:54,600 AND ADULTS WITH DOWN SYNDROME, 5204 03:13:54,600 --> 03:13:55,760 IS THEY SAY, YOU EXPECT ME TO DO 5205 03:13:55,760 --> 03:13:58,280 THIS FOR JUST ONE CHILD? 5206 03:13:58,280 --> 03:13:58,480 NO. 5207 03:13:58,480 --> 03:13:59,280 I DON'T. 5208 03:13:59,280 --> 03:14:02,360 I EXPECT YOU TO DO IT FOR EVERY 5209 03:14:02,360 --> 03:14:02,720 CHILD. 5210 03:14:02,720 --> 03:14:10,560 NEXT SLIDE, PLEASE. 5211 03:14:10,560 --> 03:14:12,480 PERSPECTIVE CAN PERPETUATE 5212 03:14:12,480 --> 03:14:14,000 STEREOTYPES AND PREJUDICE 5213 03:14:14,000 --> 03:14:16,640 WITHOUT OUR AWARENESS. 5214 03:14:16,640 --> 03:14:18,560 LESS THAN 30% KNOWS SOMEONE WITH 5215 03:14:18,560 --> 03:14:20,000 DOWN SYNDROME. 5216 03:14:20,000 --> 03:14:21,560 THIS IS HOW DISSEMINATION LIVES 5217 03:14:21,560 --> 03:14:21,720 ON. 5218 03:14:21,720 --> 03:14:24,240 NEXT SLIDE, PLEASE. 5219 03:14:24,240 --> 03:14:25,160 EDUCATION IS THE KEY. 5220 03:14:25,160 --> 03:14:28,240 UNDERSTANDING WHAT IS MISSING. 5221 03:14:28,240 --> 03:14:28,720 TECHNOLOGY FOR KIDS WITH 5222 03:14:28,720 --> 03:14:29,800 DISABILITIES MAKES THINGS 5223 03:14:29,800 --> 03:14:30,080 POSSIBLE. 5224 03:14:30,080 --> 03:14:32,480 ONE OF THE STRUGGLES IS HELPING 5225 03:14:32,480 --> 03:14:33,800 PEOPLE UNDERSTAND HOW TO USE 5226 03:14:33,800 --> 03:14:35,720 TECHNOLOGY IN A MEANINGFUL 5227 03:14:35,720 --> 03:14:35,960 FASHION. 5228 03:14:35,960 --> 03:14:37,120 I WALK INTO CLASSROOMS ALL THE 5229 03:14:37,120 --> 03:14:39,320 TIME AND I SEE OUR KIDS WITH LOW 5230 03:14:39,320 --> 03:14:45,160 MUSSEL TONE AND THEIR -- 5231 03:14:45,160 --> 03:14:48,560 [ BACKGROUND NOISE ] 5232 03:14:48,560 --> 03:14:49,840 LOW MUSSEL TONE IN THEIR EYES, 5233 03:14:49,840 --> 03:14:53,600 THEY AREN'T GOING TO SCORE WELL. 5234 03:14:53,600 --> 03:14:56,040 HOWEVER, WHEN USED IN A 5235 03:14:56,040 --> 03:14:57,920 MEANINGFUL FASHION, TECHNOLOGY 5236 03:14:57,920 --> 03:14:59,880 ALTERS THE PLAYING FIELD TO MAKE 5237 03:14:59,880 --> 03:15:02,080 IT MUCH MORE POSSIBLE. 5238 03:15:02,080 --> 03:15:02,600 NEXT SLIDE. 5239 03:15:02,600 --> 03:15:04,720 NEXT SLIDE, PLEASE. 5240 03:15:04,720 --> 03:15:05,680 ONE OF THE THINGS THAT IS REALLY 5241 03:15:05,680 --> 03:15:06,680 IMPORTANT WHEN WE'RE TALKING 5242 03:15:06,680 --> 03:15:08,560 ABOUT RURAL AREAS IS TALKING 5243 03:15:08,560 --> 03:15:10,440 ABOUT ACCEPTING WHAT HAS BEEN. 5244 03:15:10,440 --> 03:15:12,680 BECAUSE WE HAVE TO LET THAT GO. 5245 03:15:12,680 --> 03:15:14,560 AND THAT MEANS THE PAST OF THE 5246 03:15:14,560 --> 03:15:16,400 RURAL AREAS AS IT RELATES TO 5247 03:15:16,400 --> 03:15:19,560 THINGS THAT HAPPENED TO US AS 5248 03:15:19,560 --> 03:15:20,880 PARENTS AND FAMILY MEMBERS OF 5249 03:15:20,880 --> 03:15:23,000 SOMEONE WE LOVE WHO HAPPENS TO 5250 03:15:23,000 --> 03:15:23,440 HAVE DOWN SYNDROME. 5251 03:15:23,440 --> 03:15:24,640 WE HAVE TO LIVE WITH WHAT IS. 5252 03:15:24,640 --> 03:15:25,400 LIKE THE NOW. 5253 03:15:25,400 --> 03:15:27,280 LIKE THIS IS WHAT IS HAPPENING 5254 03:15:27,280 --> 03:15:27,680 RIGHT NOW. 5255 03:15:27,680 --> 03:15:30,560 AND WE HAVE TO LOOK -- NEXT 5256 03:15:30,560 --> 03:15:31,520 SLIDE, PLEASE -- WITH HOPE 5257 03:15:31,520 --> 03:15:33,040 TOWARDS THE FUTURE. 5258 03:15:33,040 --> 03:15:35,360 THE VERY REAL REALITY IS IF 5259 03:15:35,360 --> 03:15:37,280 NOBODY TOLD ME HOW AMAZING 5260 03:15:37,280 --> 03:15:38,880 ELLIOT WAS GOING TO BE AND 5261 03:15:38,880 --> 03:15:39,880 NOBODY SAID HE WAS GOING TO BE 5262 03:15:39,880 --> 03:15:41,680 SHOEING HORSES, YOU KNOW SOMEONE 5263 03:15:41,680 --> 03:15:42,600 WHO DOESN'T HAVE A CHILD OR AN 5264 03:15:42,600 --> 03:15:44,920 ADULT WITH DOWN SYNDROME, THEY 5265 03:15:44,920 --> 03:15:45,920 AREN'T BEING TOLD THAT. 5266 03:15:45,920 --> 03:15:49,320 NEXT SLIDE, PLEASE. 5267 03:15:49,320 --> 03:15:51,760 WE HAVE TO CHANGE THE NARRATIVES 5268 03:15:51,760 --> 03:15:52,920 TO FOCUS ON STRENGTHS. 5269 03:15:52,920 --> 03:15:54,880 WHEN WE BUILD FROM THERE. 5270 03:15:54,880 --> 03:15:57,080 WE RECRUIT PEOPLE FOR MEDICAL 5271 03:15:57,080 --> 03:15:58,640 RESEARCH WE ALSO NEED TO RECRUIT 5272 03:15:58,640 --> 03:15:59,720 BASED ON STRENGTHS. 5273 03:15:59,720 --> 03:16:02,760 HOW ARE WE GOING TO HELP? 5274 03:16:02,760 --> 03:16:05,360 WHAT DO WE HAVE THAT IS VALUE 5275 03:16:05,360 --> 03:16:05,560 ADDED? 5276 03:16:05,560 --> 03:16:06,680 NEXT SLIDE, PLEASE. 5277 03:16:06,680 --> 03:16:08,000 DOWN SYNDROME DOES NOT 5278 03:16:08,000 --> 03:16:08,400 DISCRIMINATE. 5279 03:16:08,400 --> 03:16:10,560 IT'S IN RURAL AREAS, IT'S IN ALL 5280 03:16:10,560 --> 03:16:11,560 OF OUR COMMUNITIES. 5281 03:16:11,560 --> 03:16:12,600 WHATEVER ETHNICITY OR GENDER YOU 5282 03:16:12,600 --> 03:16:16,120 WISH TO IDENTIFY AS. 5283 03:16:16,120 --> 03:16:16,720 CREATE -- NEXT SLIDE, PLEASE. 5284 03:16:16,720 --> 03:16:19,320 WE HAVE TO CREATE A COMMON 5285 03:16:19,320 --> 03:16:19,520 PURPOSE. 5286 03:16:19,520 --> 03:16:22,680 WE HAVE TO FIND -- NEXT SLIDE, 5287 03:16:22,680 --> 03:16:22,920 PLEASE. 5288 03:16:22,920 --> 03:16:23,960 WE HAVE TO FIND THE JOY. 5289 03:16:23,960 --> 03:16:26,280 WE HAVE TO CELEBRATE. 5290 03:16:26,280 --> 03:16:27,480 WE HAVE TO BUILD OUR COMMUNITY 5291 03:16:27,480 --> 03:16:28,120 AND BEGIN THE JOURNEY. 5292 03:16:28,120 --> 03:16:29,680 NEXT SLIDE, PLEASE. 5293 03:16:29,680 --> 03:16:30,800 AND WHEN WE CREATE THIS 5294 03:16:30,800 --> 03:16:33,480 COMMUNITY, WE HAVE TO FOCUS ON 5295 03:16:33,480 --> 03:16:35,080 PRESENTING THE POSSIBILITIES, 5296 03:16:35,080 --> 03:16:36,840 WHAT IS VALUE ADDED FOR FAMILIES 5297 03:16:36,840 --> 03:16:37,160 AND ADULTS? 5298 03:16:37,160 --> 03:16:39,960 NEXT SLIDE, PLEASE. 5299 03:16:39,960 --> 03:16:41,280 BECAUSE THE POSSIBILITIES BOTH 5300 03:16:41,280 --> 03:16:44,160 MEDICAL RESEARCH AND EDUCATIONAL 5301 03:16:44,160 --> 03:16:46,400 QUALITIES IS TO INCREASE ACCESS 5302 03:16:46,400 --> 03:16:47,600 ACROSS THE LIFESPAN. 5303 03:16:47,600 --> 03:16:50,360 NEXT SLIDE, PLEASE. 5304 03:16:50,360 --> 03:16:51,960 PLEASE DON'T FORGET, NO ONE 5305 03:16:51,960 --> 03:16:52,840 TELLS YOU THE GOOD STUFF. 5306 03:16:52,840 --> 03:16:56,080 MEDIAONE 01, ONE OF THE MOST 5307 03:16:56,080 --> 03:16:57,160 POWERFUL WAYS TO HELP FAMILIES, 5308 03:16:57,160 --> 03:16:57,920 ESPECIALLY IN RURAL COMMUNITIES 5309 03:16:57,920 --> 03:17:00,040 IS TO ENCOURAGE THEM TO SHARE 5310 03:17:00,040 --> 03:17:03,200 THEIR STORIES TO ENCOURAGE THEM 5311 03:17:03,200 --> 03:17:05,760 TO LET OTHERS IN AND NOT SELF 5312 03:17:05,760 --> 03:17:07,640 ICE LATE AND NOT SELF SEGREGATE. 5313 03:17:07,640 --> 03:17:08,640 NEXT SLIDE, PLEASE. 5314 03:17:08,640 --> 03:17:10,120 IF THE WHOLE GOAL IS TO CREATE A 5315 03:17:10,120 --> 03:17:12,040 CULTURE SHIFT AND THAT IS MY 5316 03:17:12,040 --> 03:17:14,320 GOAL WITH DOWN COUNTRY AND MY 5317 03:17:14,320 --> 03:17:17,280 GOAL WITH WHAT WE'RE WORKING TO 5318 03:17:17,280 --> 03:17:18,120 DO WITH THE NATIONAL DOWN 5319 03:17:18,120 --> 03:17:18,640 SYNDROME CONGRESS. 5320 03:17:18,640 --> 03:17:21,760 LIKE EXPOSURE, EDUCATION, 5321 03:17:21,760 --> 03:17:22,800 EXPERIENCE, CHANGE. 5322 03:17:22,800 --> 03:17:27,160 LIKE ALL OF THESE PIECES BECOME 5323 03:17:27,160 --> 03:17:28,360 LIFE ALTERING FOR INDIVIDUALS 5324 03:17:28,360 --> 03:17:30,760 AND IF YOU TRULY WANT TO INCLUDE 5325 03:17:30,760 --> 03:17:31,480 THEM THROUGH MEDICAL RESEARCH 5326 03:17:31,480 --> 03:17:32,440 AND IN YOUR COMMUNITIES AND 5327 03:17:32,440 --> 03:17:34,240 BEGIN TO BUILD THIS SPACE, THEN 5328 03:17:34,240 --> 03:17:36,200 WE HAVE TO CHANGE THE NARRATIVE 5329 03:17:36,200 --> 03:17:38,120 AND CHANGE HOW WE CHOOSE TO 5330 03:17:38,120 --> 03:17:41,440 FOCUS ON INDIVIDUALS OF ALL 5331 03:17:41,440 --> 03:17:41,680 ABILITIES. 5332 03:17:41,680 --> 03:17:42,640 AND SO, I PUT THIS VIDEO IN 5333 03:17:42,640 --> 03:17:44,360 SIMPLY BECAUSE I WANTED YOU TO 5334 03:17:44,360 --> 03:17:45,520 SEE NOBODY EVER TOLD ME THAT 5335 03:17:45,520 --> 03:17:48,920 ELLIOT WOULD BE SINGING WITH 5336 03:17:48,920 --> 03:17:53,240 CHRIS JANZEN IN FRONT OF 3500 5337 03:17:53,240 --> 03:17:53,480 PEOPLE. 5338 03:17:53,480 --> 03:17:54,080 THE POSSIBILITIES ARE ENDLESS 5339 03:17:54,080 --> 03:17:54,880 FOR OUR CHILDREN AND ADULTS WITH 5340 03:17:54,880 --> 03:17:56,400 DOWN SYNDROME BUT MEDICAL 5341 03:17:56,400 --> 03:17:56,920 RESEARCH AND EDUCATIONAL 5342 03:17:56,920 --> 03:17:58,040 EQUALITY MATTER DESPERATELY. 5343 03:17:58,040 --> 03:17:59,480 AND LINDA, I DID IT. 5344 03:17:59,480 --> 03:18:06,400 15 MINUTES. 5345 03:18:06,400 --> 03:18:07,760 >> THANK YOU SO MUCH! 5346 03:18:07,760 --> 03:18:11,520 WHAT AN IMPORTANT MESSAGE. 5347 03:18:11,520 --> 03:18:13,040 BREAKDOWN THE BARRIERS. 5348 03:18:13,040 --> 03:18:15,720 CREATE THOSE ADVOCATES AND 5349 03:18:15,720 --> 03:18:17,880 CREATE THOSE ALLIES. 5350 03:18:17,880 --> 03:18:20,480 SUCH A VERY, VERY IMPORTANT 5351 03:18:20,480 --> 03:18:20,680 CONCEPT. 5352 03:18:20,680 --> 03:18:22,480 THANK YOU VERY MUCH. 5353 03:18:22,480 --> 03:18:26,160 THE NEXT PRESENTATION IS 5354 03:18:26,160 --> 03:18:29,120 DR. BRIAN CHICOINE WHO IS THE 5355 03:18:29,120 --> 03:18:29,880 CO-FOUNDER AND MEDICAL DIRECTOR 5356 03:18:29,880 --> 03:18:32,920 AT THE ADVOCATE MEDICAL GROUP 5357 03:18:32,920 --> 03:18:35,000 ADULT DOWN SYNDROME CENTER IN 5358 03:18:35,000 --> 03:18:36,240 PARK RIDGE, ILLINOIS. 5359 03:18:36,240 --> 03:18:40,400 THE CENTER HAS SERVED OVER 6000 5360 03:18:40,400 --> 03:18:41,840 ADOLESCENTS AND ADULTS WITH DOWN 5361 03:18:41,840 --> 03:18:45,720 SYNDROME SINCE INCEPTION IN 19 5362 03:18:45,720 --> 03:18:46,960 1992. 5363 03:18:46,960 --> 03:18:49,200 DR. BRIAN CHICOINE HAS PUBLISHED 5364 03:18:49,200 --> 03:18:49,840 MANY ARTICLES REGARDING THE 5365 03:18:49,840 --> 03:18:52,320 HEALTH OF PEOPLE WITH DOWN 5366 03:18:52,320 --> 03:18:58,480 SYNDROME AND IS A CO-AUTHOR OF 5367 03:18:58,480 --> 03:19:00,720 BOOKS ON MENTAL WELLNESS IN 5368 03:19:00,720 --> 03:19:03,400 ADULTS WITH DOWN SYNDROME AND A 5369 03:19:03,400 --> 03:19:04,000 GUIDE TO GOOD HEALTH IN TEENS 5370 03:19:04,000 --> 03:19:05,800 AND ADULTS WITH DOWN SYNDROME. 5371 03:19:05,800 --> 03:19:06,440 BRIAN CHICOINE. 5372 03:19:06,440 --> 03:19:08,520 >> BRIAN CHICOINE: THANK YOU 5373 03:19:08,520 --> 03:19:08,760 VERY MUCH. 5374 03:19:08,760 --> 03:19:12,960 I'LL GIVE A PLUG TO KATE. 5375 03:19:12,960 --> 03:19:13,680 I WAS INTERVIEWED BY THE RADIO 5376 03:19:13,680 --> 03:19:15,360 PROGRAM SEVERAL YEARS AGO. 5377 03:19:15,360 --> 03:19:17,200 THEY DO A DELIGHTFUL JOB. 5378 03:19:17,200 --> 03:19:18,640 SO THANK YOU, AND FOR THE 5379 03:19:18,640 --> 03:19:20,160 TRANSLATORS, I'LL TRY TO SPEAK 5380 03:19:20,160 --> 03:19:20,400 SLOWLY. 5381 03:19:20,400 --> 03:19:23,720 IT'S NOT ONE OF MY STRONG SUITS. 5382 03:19:23,720 --> 03:19:25,280 LIVE I HAVE ASKED PEOPLE TO 5383 03:19:25,280 --> 03:19:27,480 THROW THINGS AT ME IF I GET 5384 03:19:27,480 --> 03:19:27,880 GOING TOO FAST. 5385 03:19:27,880 --> 03:19:30,080 SO IF YOU COULD VIRTUALLY THROW 5386 03:19:30,080 --> 03:19:32,000 SOMETHING AT ME, THAT WOULD BE 5387 03:19:32,000 --> 03:19:32,200 FINE. 5388 03:19:32,200 --> 03:19:33,480 SO, LISTENING TO THE OTHER 5389 03:19:33,480 --> 03:19:35,520 PRESENTERS, CLEARLY THERE ARE 5390 03:19:35,520 --> 03:19:40,120 FOLKS THAT ARE CLEARLY MORE 5391 03:19:40,120 --> 03:19:41,920 QUALIFIED AND HAVE ADDRESSED 5392 03:19:41,920 --> 03:19:43,960 THIS BETTER THAN WE HAVE WITH 5393 03:19:43,960 --> 03:19:45,360 MORE THOUGHTFUL AND PROACTIVE 5394 03:19:45,360 --> 03:19:49,280 PROGRAMS TO TRY TO INCLUDE OR 5395 03:19:49,280 --> 03:19:50,760 ENHANCE PARTICIPANT DIVERSITY IN 5396 03:19:50,760 --> 03:19:52,960 DOWN SYNDROME CLINICAL RESEARCH 5397 03:19:52,960 --> 03:19:56,120 AND MORE SUCCESSFUL THAN WE 5398 03:19:56,120 --> 03:19:56,440 HAVE, FRANKLY. 5399 03:19:56,440 --> 03:19:58,440 AS I PREPARE FOR THIS AND -- I 5400 03:19:58,440 --> 03:20:00,360 HAVE NO MAGIC BULLET. 5401 03:20:00,360 --> 03:20:03,000 I'M GOING TO SHARE SOME THOUGHTS 5402 03:20:03,000 --> 03:20:08,560 AND SEE WHAT SHAKES OUT AS WE GO 5403 03:20:08,560 --> 03:20:09,000 HERE. 5404 03:20:09,000 --> 03:20:09,320 NEXT SLIDE. 5405 03:20:09,320 --> 03:20:13,400 SO AGAIN AS WAS MENTIONED, WE'RE 5406 03:20:13,400 --> 03:20:16,280 A CLINIC THAT OPENED IN 1992 IN 5407 03:20:16,280 --> 03:20:19,360 THE CHICAGO SUBURBS AND WE TAKE 5408 03:20:19,360 --> 03:20:21,440 CARE OF ADOLESCENTS AND ADULTS 5409 03:20:21,440 --> 03:20:22,840 WITH DOWN SYNDROME 12 AND OLDER 5410 03:20:22,840 --> 03:20:25,640 AND TRY TO PROVIDE COMPREHENSIVE 5411 03:20:25,640 --> 03:20:27,240 COMMUNITY-BASED HEALTH CARE 5412 03:20:27,240 --> 03:20:30,480 SERVICES IN THE OFFICE, IN THE 5413 03:20:30,480 --> 03:20:31,600 HOSPITAL, LOCAL NURSING HOME FOR 5414 03:20:31,600 --> 03:20:34,560 SOME OF OUR OLDER FOLKS AND 5415 03:20:34,560 --> 03:20:36,560 GROUP HOME VISITS AS NEEDED. 5416 03:20:36,560 --> 03:20:38,280 SO WE SEEN A LOT OF DIFFERENT 5417 03:20:38,280 --> 03:20:42,760 PEOPLE OVER THE YEARS AND BUT 5418 03:20:42,760 --> 03:20:44,840 THERE IS STILL A CHALLENGE AND 5419 03:20:44,840 --> 03:20:48,600 WE'LL TALK ABOUT THAT IN JUST A 5420 03:20:48,600 --> 03:20:48,840 SECOND. 5421 03:20:48,840 --> 03:20:49,560 NEXT SLIDE. 5422 03:20:49,560 --> 03:20:51,320 SO WE SEE INDIVIDUALS 12 AND 5423 03:20:51,320 --> 03:20:52,760 OVER LIVE IN ILLINOIS. 5424 03:20:52,760 --> 03:20:55,000 WE HAVE THREE FAMILY PHYSICIAN 5425 03:20:55,000 --> 03:20:56,360 THAT IS PROVIDE THE CARE. 5426 03:20:56,360 --> 03:20:58,560 WE DO PRIMARY CARE AS WELL AS 5427 03:20:58,560 --> 03:21:00,000 FOR SOME INDIVIDUALS, DEPENDING 5428 03:21:00,000 --> 03:21:02,880 ON HOW FAR THEY HAVE COME MORE 5429 03:21:02,880 --> 03:21:05,080 SPECIALTY CARE WHERE THEY HAVE A 5430 03:21:05,080 --> 03:21:06,120 FAMILY PHYSICIAN OR A PHYSICIAN 5431 03:21:06,120 --> 03:21:08,720 NEAR CLOSER TO HOME AS WELL. 5432 03:21:08,720 --> 03:21:10,720 WE ALSO PROVIDE PHYSICAL AND 5433 03:21:10,720 --> 03:21:12,240 MENTAL HEALTH CARE IN THE CLINIC 5434 03:21:12,240 --> 03:21:13,840 AND IN THE HOSPITAL AND 5435 03:21:13,840 --> 03:21:14,400 RESIDENTIAL FACILITIES AND 5436 03:21:14,400 --> 03:21:15,240 NURSING HOMES. 5437 03:21:15,240 --> 03:21:18,120 NEXT SLIDE. 5438 03:21:18,120 --> 03:21:20,240 WE ALSO HAVE OCCUPATIONAL 5439 03:21:20,240 --> 03:21:22,040 THERAPIST WITH A PH.D. 5440 03:21:22,040 --> 03:21:22,960 DISABILITY STUDIES WHO DOES A 5441 03:21:22,960 --> 03:21:27,240 LOT OF WORK IN TRYING TO HELP 5442 03:21:27,240 --> 03:21:28,600 REGAIN OR IMPROVE FUNCTION IN 5443 03:21:28,600 --> 03:21:33,160 OUR FOLKS IN A VARIETY OF WAYS. 5444 03:21:33,160 --> 03:21:34,880 WE HAVE A LICENSED CLINICAL 5445 03:21:34,880 --> 03:21:36,080 SOCIALITY WORKER THAT HELPS US 5446 03:21:36,080 --> 03:21:37,040 WITH MENTAL HEALTH TREATMENT. 5447 03:21:37,040 --> 03:21:38,960 AND THEN WE HAVE A PATIENT 5448 03:21:38,960 --> 03:21:41,480 ADVOCATE WHO HELPS FAMILIES AND 5449 03:21:41,480 --> 03:21:44,120 PATIENTS GET ADDITIONAL 5450 03:21:44,120 --> 03:21:47,840 INFORMATION AS WELL AS SERVICES. 5451 03:21:47,840 --> 03:21:53,720 NEXT SLIDE. 5452 03:21:53,720 --> 03:21:55,280 SO, THE GOAL IS TO -- LOOKING AT 5453 03:21:55,280 --> 03:21:59,320 TRYING TO IMPROVE PARTICIPATION. 5454 03:21:59,320 --> 03:21:59,880 SO IN RESEARCH, I THINK THE 5455 03:21:59,880 --> 03:22:00,360 FIRST STEP IS TO IMPROVE 5456 03:22:00,360 --> 03:22:01,560 PARTICIPATION OF ALL PEOPLE WITH 5457 03:22:01,560 --> 03:22:03,240 DOWN SYNDROME. 5458 03:22:03,240 --> 03:22:06,080 I THINK THIS IS A CHALLENGE 5459 03:22:06,080 --> 03:22:07,920 SOMETIMES, PARTICULARLY IN SOME 5460 03:22:07,920 --> 03:22:09,240 OF THE CLINICAL TRIALS WHERE 5461 03:22:09,240 --> 03:22:13,280 THERE IS AN INTERVENTION, 5462 03:22:13,280 --> 03:22:15,760 FAMILIES CAN BE HESITANT ABOUT 5463 03:22:15,760 --> 03:22:17,480 PUTTING THEIR SIBLING OR KIDS 5464 03:22:17,480 --> 03:22:19,400 THROUGH A TRIAL AND THAT 5465 03:22:19,400 --> 03:22:20,320 INCLUDES MEDICATION PERHAPS OR A 5466 03:22:20,320 --> 03:22:21,760 TEST OR WHATEVER THE CASE MAY 5467 03:22:21,760 --> 03:22:21,920 BE. 5468 03:22:21,920 --> 03:22:24,120 AND SO CERTAINLY THAT IS AN 5469 03:22:24,120 --> 03:22:27,240 ISSUE IN AND OF ITSELF. 5470 03:22:27,240 --> 03:22:28,120 BUT ALSO PARTICULARLY WHEN I WAS 5471 03:22:28,120 --> 03:22:30,360 ASKED TO ADDRESS WAS TO IMPROVE 5472 03:22:30,360 --> 03:22:32,880 PARTICIPATION OF PEOPLE THAT ARE 5473 03:22:32,880 --> 03:22:36,640 OTHERWISE UNDERREPRESENTED IN 5474 03:22:36,640 --> 03:22:39,160 STUDIES. 5475 03:22:39,160 --> 03:22:40,560 NEXT SLIDE. 5476 03:22:40,560 --> 03:22:42,840 SO AGAIN JUST TO THE DEFINITION 5477 03:22:42,840 --> 03:22:44,120 WAS SHARED WITH ME AS I PREPARED 5478 03:22:44,120 --> 03:22:49,080 FOR THIS WAS, RACIAL AND ETHNIC 5479 03:22:49,080 --> 03:22:50,680 MINORITIES, PEOPLE WITH LOW 5480 03:22:50,680 --> 03:22:55,760 SOCIAL ECONOMIC STATUS, PEOPLE 5481 03:22:55,760 --> 03:22:56,320 WITH DISABILITIES, OBVIOUSLY 5482 03:22:56,320 --> 03:22:58,960 THEY IS 100% OF THE PEOPLE WE 5483 03:22:58,960 --> 03:22:59,720 SEE. 5484 03:22:59,720 --> 03:23:01,320 AND THEN KATE ADDRESSED PEOPLE 5485 03:23:01,320 --> 03:23:03,160 FROM RURAL COMMUNITIES AND OTHER 5486 03:23:03,160 --> 03:23:08,440 DISADVANTAGED BACKGROUNDS. 5487 03:23:08,440 --> 03:23:08,760 NEXT SLIDE. 5488 03:23:08,760 --> 03:23:14,440 KEEP GOING. 5489 03:23:14,440 --> 03:23:17,200 WHEN WE STARTED THE CLINIC 30 5490 03:23:17,200 --> 03:23:19,160 YEARS AGO, ONE OF THE VERY EARLY 5491 03:23:19,160 --> 03:23:21,120 PARENTS THAT I SAW, THE MOM 5492 03:23:21,120 --> 03:23:23,600 ASKED ME, ARE YOU DOING 5493 03:23:23,600 --> 03:23:23,880 RESEARCH? 5494 03:23:23,880 --> 03:23:27,240 AND AT THE TIME THE ANSWER WAS, 5495 03:23:27,240 --> 03:23:27,400 NO. 5496 03:23:27,400 --> 03:23:28,280 BUT I WAS SURPRISED AT HER 5497 03:23:28,280 --> 03:23:30,920 RESPONSE WHEN I SAID, NO. 5498 03:23:30,920 --> 03:23:33,280 HER RESPONSE WAS, GOOD. 5499 03:23:33,280 --> 03:23:34,800 WELL, THAT'S AN INTERESTING 5500 03:23:34,800 --> 03:23:36,280 RESPONSE TO THAT. 5501 03:23:36,280 --> 03:23:40,040 IN AN AREA WHERE THERE IS A 5502 03:23:40,040 --> 03:23:41,400 GREAT LACK OF INFORMATION. 5503 03:23:41,400 --> 03:23:43,000 AND SHE TOLD ME A STORY. 5504 03:23:43,000 --> 03:23:46,120 SHE HAD BEEN TO ANOTHER SITE IN 5505 03:23:46,120 --> 03:23:47,160 ANOTHER PLACE AND THEY HAD DONE 5506 03:23:47,160 --> 03:23:50,640 EIGHT HOURS OF RESEARCH FOR THE 5507 03:23:50,640 --> 03:23:52,760 INDIVIDUAL AND/OR ON THE 5508 03:23:52,760 --> 03:23:53,440 INDIVIDUAL, AND WITH DOWN 5509 03:23:53,440 --> 03:23:55,400 SYNDROME, AND THEN AT THE END, 5510 03:23:55,400 --> 03:23:59,080 THEY GAVE HER A REPORT OF THE 5511 03:23:59,080 --> 03:24:01,240 FINDINGS AND A LIST OF THINGS 5512 03:24:01,240 --> 03:24:02,560 THEY RECOMMENDED BE DONE. 5513 03:24:02,560 --> 03:24:05,280 AND THE MOM ASKED, ARE YOU GOING 5514 03:24:05,280 --> 03:24:06,320 TO PROVIDE THOSE MEDICAL 5515 03:24:06,320 --> 03:24:06,560 SERVICES? 5516 03:24:06,560 --> 03:24:08,360 AND THEY SAID, NO. 5517 03:24:08,360 --> 03:24:09,320 THIS LOCATION SAID NO. 5518 03:24:09,320 --> 03:24:11,320 AND THEN THEY SAID, THE -- THE 5519 03:24:11,320 --> 03:24:12,920 MOM ASKED, DO YOU HAVE ANY 5520 03:24:12,920 --> 03:24:15,600 REFERRALS FOR US TO GET THIS 5521 03:24:15,600 --> 03:24:17,000 SERVICES? 5522 03:24:17,000 --> 03:24:18,960 AND THE ANSWER WAS NO TO THAT AS 5523 03:24:18,960 --> 03:24:19,160 WELL. 5524 03:24:19,160 --> 03:24:21,720 AND SO, THIS MOM HER TAKE ON 5525 03:24:21,720 --> 03:24:24,440 THIS, AND I HEARD THIS FROM LOTS 5526 03:24:24,440 --> 03:24:27,320 OF FOLKS OVER THE YEARS -- I'M 5527 03:24:27,320 --> 03:24:27,960 JUST TRYING TO GET BASIC HEALTH 5528 03:24:27,960 --> 03:24:28,160 CARE. 5529 03:24:28,160 --> 03:24:31,440 I DON'T HAVE TIME TO DO RESEARCH 5530 03:24:31,440 --> 03:24:32,640 OR PARTICIPATE IN RESEARCH. 5531 03:24:32,640 --> 03:24:34,160 SO REALLY WHAT WE HAVE FOUND 5532 03:24:34,160 --> 03:24:36,320 WITH THE FAMILIES THAT ARE 5533 03:24:36,320 --> 03:24:37,160 PRIMARILY LOOKING FOR IS HELP 5534 03:24:37,160 --> 03:24:40,160 WITH THE HEALTH ISSUES, PHYSICAL 5535 03:24:40,160 --> 03:24:44,000 AND MENTAL HEALTH ISSUES AS WELL 5536 03:24:44,000 --> 03:24:48,080 AS OPTIMIZING HEALTH PROMOTION 5537 03:24:48,080 --> 03:24:50,200 AND THEN RESEARCH CAN FOLLOW 5538 03:24:50,200 --> 03:24:53,280 SUIT AFTER GETTING THOSE 5539 03:24:53,280 --> 03:24:53,960 SERVICES. 5540 03:24:53,960 --> 03:24:57,720 NEXT SLIDE. 5541 03:24:57,720 --> 03:25:00,040 SO THERE WAS A STUDY DONE 5542 03:25:00,040 --> 03:25:01,320 RECENTLY THAT ESTIMATED LESS 5543 03:25:01,320 --> 03:25:03,280 THAN 5% OF ADULTS WITH DOWN 5544 03:25:03,280 --> 03:25:04,520 SYNDROME HAVE ACCESS TO A DOWN 5545 03:25:04,520 --> 03:25:07,160 SYNDROME SPECIALTY CLINIC. 5546 03:25:07,160 --> 03:25:10,360 SO, THE OTHER 95% IS OUT IN THE 5547 03:25:10,360 --> 03:25:10,640 COMMUNITY. 5548 03:25:10,640 --> 03:25:13,120 SOME GETTING GOOD CARE FROM 5549 03:25:13,120 --> 03:25:15,080 THEIR LOCAL PHYSICIAN AND SOME 5550 03:25:15,080 --> 03:25:16,800 STRUGGLING TO FIND ANSWERS TO 5551 03:25:16,800 --> 03:25:19,560 SOME OF THE CHALLENGES THEY ARE 5552 03:25:19,560 --> 03:25:19,760 FACING. 5553 03:25:19,760 --> 03:25:25,520 NEXT SLIDE. 5554 03:25:25,520 --> 03:25:29,240 IN THIS -- STEPHANIE DID THIS 5555 03:25:29,240 --> 03:25:29,440 STUDY. 5556 03:25:29,440 --> 03:25:32,680 SO IF YOU SHARED THIS ALREADY, 5557 03:25:32,680 --> 03:25:33,000 FORGIVE ME. 5558 03:25:33,000 --> 03:25:37,080 BUT IN THE STUDY THAT WAS DONE, 5559 03:25:37,080 --> 03:25:39,880 THEY LOOKED AT 14 OF THE 25 5560 03:25:39,880 --> 03:25:41,280 POINTS IN THE UNITED STATES, 25 5561 03:25:41,280 --> 03:25:43,480 LISTED ON LINE AND 25 RESPONDED 5562 03:25:43,480 --> 03:25:44,200 TO SURVEY. 5563 03:25:44,200 --> 03:25:46,640 OF THE 14 CLINICS, ONLY 3% 5564 03:25:46,640 --> 03:25:48,040 POTENTIALLY HAVE THE ADULTS WITH 5565 03:25:48,040 --> 03:25:49,160 DOWN SYNDROME COULD BE SERVED 5566 03:25:49,160 --> 03:25:51,160 AND IF YOU INCLUDED ALL 25, 5567 03:25:51,160 --> 03:25:52,320 ABOUT 5%. 5568 03:25:52,320 --> 03:25:58,000 SO AGAIN, A SIGNIFICANT 5569 03:25:58,000 --> 03:26:00,280 SHORTCOMING OF SERVICES FOR 5570 03:26:00,280 --> 03:26:06,880 THOSE OTHER 95-97%. 5571 03:26:06,880 --> 03:26:07,800 NEXT SLIDE. 5572 03:26:07,800 --> 03:26:10,760 SO, IT'S BEEN OUR EXPERIENCE, WE 5573 03:26:10,760 --> 03:26:13,080 ARE PARTICIPATING IN THE DSR 5574 03:26:13,080 --> 03:26:18,600 STUDY AND WE HAVE ENROLLED 56 5575 03:26:18,600 --> 03:26:18,920 PARTICIPANTS. 5576 03:26:18,920 --> 03:26:20,960 AND WE ONLY SEE 2000 INDIVIDUALS 5577 03:26:20,960 --> 03:26:22,680 WITH DOWN SYNDROME. 5578 03:26:22,680 --> 03:26:25,280 SO EVEN IN A PLACE THAT IS 5579 03:26:25,280 --> 03:26:26,760 PROVIDING SOME SIGNIFICANT 5580 03:26:26,760 --> 03:26:30,080 SERVICES, REALLY ONLY ABOUT 3% 5581 03:26:30,080 --> 03:26:33,280 OF OUR PATIENTS ARE 5582 03:26:33,280 --> 03:26:33,880 PARTICIPATING. 5583 03:26:33,880 --> 03:26:35,840 SO, EVEN WHEN PROVIDING 5584 03:26:35,840 --> 03:26:39,200 SERVICES, THERE IS GOING TO BE A 5585 03:26:39,200 --> 03:26:42,040 SIGNIFICANT NUMBER OF 5586 03:26:42,040 --> 03:26:44,520 INDIVIDUALS THAT DON'T 5587 03:26:44,520 --> 03:26:45,120 PARTICIPATE. 5588 03:26:45,120 --> 03:26:49,280 AND THIS STUDY DOES NOT HAVE ANY 5589 03:26:49,280 --> 03:26:49,600 INTERVENTION. 5590 03:26:49,600 --> 03:26:50,400 IT'S INFORMATION GATHERING IF 5591 03:26:50,400 --> 03:26:53,280 YOU WILL. 5592 03:26:53,280 --> 03:26:57,720 THERE IS NEUROSIGHT TESTING AND 5593 03:26:57,720 --> 03:26:57,920 EXAMS. 5594 03:26:57,920 --> 03:26:59,720 SO OUR PRIMARY FOCUS OF THIS 5595 03:26:59,720 --> 03:27:00,360 STUDY. 5596 03:27:00,360 --> 03:27:03,160 WE ARE ACTUALLY AGAIN THE 5597 03:27:03,160 --> 03:27:03,720 INTERESTING THING IS WE ARE 5598 03:27:03,720 --> 03:27:06,200 ABOUT 25% OF THE TOTAL ENROLLEES 5599 03:27:06,200 --> 03:27:08,480 IN THE 12 SITE STUDY. 5600 03:27:08,480 --> 03:27:11,560 AGAIN, WE DO HAVE THE ADVANTAGE 5601 03:27:11,560 --> 03:27:12,640 WE SERVE LOTS OF FOLKS AND 5602 03:27:12,640 --> 03:27:14,520 THEREFORE EVEN THOUGH OUR 5603 03:27:14,520 --> 03:27:16,880 PERCENTAGE IS ONLY 3% OF OUR 5604 03:27:16,880 --> 03:27:18,120 PATIENTS, IT STILL IS A 5605 03:27:18,120 --> 03:27:21,520 SIGNIFICANT NUMBER OF PEOPLE. 5606 03:27:21,520 --> 03:27:22,840 UNFORTUNATELY, WE DO HAVE SOME 5607 03:27:22,840 --> 03:27:24,360 BUT WE ARE STILL NOT DOING A 5608 03:27:24,360 --> 03:27:27,960 VERY GOOD JOB WITH ETHNIC AND 5609 03:27:27,960 --> 03:27:30,000 RACIAL DIVERSITY IN THE STUDY. 5610 03:27:30,000 --> 03:27:32,240 AND THAT REALLY IS REFLECTIVE OF 5611 03:27:32,240 --> 03:27:41,560 OUR PATIENT POPULATION AND 5612 03:27:41,560 --> 03:27:42,560 THEMING THE OTHER PIECE, WE ARE 5613 03:27:42,560 --> 03:27:45,440 LOOKING AT IS, WHEN TRYING TO 5614 03:27:45,440 --> 03:27:48,680 ADDRESS THE NEEDS OF SOMEONE 5615 03:27:48,680 --> 03:27:50,840 WITH DISABILITIES, IN STUDIES, 5616 03:27:50,840 --> 03:27:53,680 WE ARE TRYING TO PROVIDE 5617 03:27:53,680 --> 03:27:54,920 INFORMATION PRIOR TO THE CONSENT 5618 03:27:54,920 --> 03:27:56,960 SO THE FAMILY AND THE INDIVIDUAL 5619 03:27:56,960 --> 03:27:58,280 WITH DOWN SYNDROME CAN TAKE A 5620 03:27:58,280 --> 03:28:00,200 LOOK AT THAT AHEAD OF TIME. 5621 03:28:00,200 --> 03:28:02,400 AND THEN WE DEVELOPED A VISUAL 5622 03:28:02,400 --> 03:28:05,280 AID VIDEO FOR THE PERSON WITH 5623 03:28:05,280 --> 03:28:06,720 DOWN SYNDROME TO EXPLAIN THE 5624 03:28:06,720 --> 03:28:07,360 STUDY. 5625 03:28:07,360 --> 03:28:09,280 AGAIN JUST TRYING TO INCLUDE THE 5626 03:28:09,280 --> 03:28:10,160 PERSON WITH DOWN SYNDROME AS 5627 03:28:10,160 --> 03:28:13,360 MUCH AS POSSIBLE IN THE STUDY. 5628 03:28:13,360 --> 03:28:17,640 AND MAKE THEM AWARE OF WHAT WAS 5629 03:28:17,640 --> 03:28:21,080 HAPPENING. 5630 03:28:21,080 --> 03:28:22,760 NEXT SLIDE. 5631 03:28:22,760 --> 03:28:24,640 SO, IT'S NOT SPECIFICALLY FOR 5632 03:28:24,640 --> 03:28:25,560 THE PURPOSE OF RESEARCH, 5633 03:28:25,560 --> 03:28:27,720 ALTHOUGH I'M HOPING THAT WILL BE 5634 03:28:27,720 --> 03:28:28,480 A SECONDARY GAIN. 5635 03:28:28,480 --> 03:28:29,800 WE ARE REALLY -- I HAVE BEEN 5636 03:28:29,800 --> 03:28:31,240 LOOKING AT THIS FOR A LONG TIME 5637 03:28:31,240 --> 03:28:32,520 AND HOW TO INCREASE THE 5638 03:28:32,520 --> 03:28:34,440 DIVERSITY OF OUR PATIENT 5639 03:28:34,440 --> 03:28:36,360 POPULATION, WHICH IS 5640 03:28:36,360 --> 03:28:37,760 PREDOMINANTLY WHITE. 5641 03:28:37,760 --> 03:28:39,400 I THINK FIRST OFFS FOR US THE 5642 03:28:39,400 --> 03:28:41,280 FIRST STEP IS TRYING TO BE AWARE 5643 03:28:41,280 --> 03:28:43,680 THAT THIS IS AN ISSUE. 5644 03:28:43,680 --> 03:28:45,160 WE ARE REALLY TRYING TO ADDRESS 5645 03:28:45,160 --> 03:28:46,840 HEALTH EQUITY ISSUES. 5646 03:28:46,840 --> 03:28:49,640 TRYING TO MAKE SURE THAT NOT 5647 03:28:49,640 --> 03:28:51,040 ONLY FOR THE HEALTH EQUITY 5648 03:28:51,040 --> 03:28:53,840 ISSUES FOR DOWN SYNDROME BUT 5649 03:28:53,840 --> 03:28:56,600 ACROSS OTHER RACIAL AND ETHNIC 5650 03:28:56,600 --> 03:28:57,360 GROUPS THAT THOSE ISSUES ARE 5651 03:28:57,360 --> 03:28:57,960 BEING ADDRESSED. 5652 03:28:57,960 --> 03:29:00,120 WE ARE PART OF A LARGE HEALTH 5653 03:29:00,120 --> 03:29:05,000 CARE SYSTEM THAT COVERS -UE CAN 5654 03:29:05,000 --> 03:29:05,600 SEE THE WHITE DOTS ON THE MAP 5655 03:29:05,600 --> 03:29:06,840 THERE. 5656 03:29:06,840 --> 03:29:10,680 THOSE ARE ALL ADVOCATE AURORA 5657 03:29:10,680 --> 03:29:11,080 SITES. 5658 03:29:11,080 --> 03:29:13,320 SO YOU CAN SEE THAT THERE IS A 5659 03:29:13,320 --> 03:29:18,240 WIDE VARIETY OF SITES. 5660 03:29:18,240 --> 03:29:21,280 SO HOW ARE THE SERVICES BEING 5661 03:29:21,280 --> 03:29:23,200 OBTAINED AND HOW CAN WE HELP 5662 03:29:23,200 --> 03:29:25,800 PARTICIPATE IN THAT? 5663 03:29:25,800 --> 03:29:28,080 TELEHEALTH -- I NEVER DID A 5664 03:29:28,080 --> 03:29:29,120 TELEHEALTH VISIT BEFORE MARCH OF 5665 03:29:29,120 --> 03:29:31,880 2000 WHEN COVID HIT. 5666 03:29:31,880 --> 03:29:34,720 BUT THAT'S BEEN A HUGE BENEFIT. 5667 03:29:34,720 --> 03:29:38,800 I DO SEE A LOT OF FOLKS, KATE 5668 03:29:38,800 --> 03:29:41,360 FROM RURAL ILLINOIS, AND I'M 5669 03:29:41,360 --> 03:29:43,520 ABLE TO SEE THEM WHEN THEY COME 5670 03:29:43,520 --> 03:29:44,920 3-4 HOURS OR MORE FOR OUR 5671 03:29:44,920 --> 03:29:46,240 APPOINTMENT AND NOW I'M ABLE TO 5672 03:29:46,240 --> 03:29:49,120 SEE THEM MORE FREQUENTLY VIA 5673 03:29:49,120 --> 03:29:52,560 TELEHEALTH, WHICH HAS BEEN A 5674 03:29:52,560 --> 03:29:54,960 HUGE ACCESS ISSUE, BENEFICIAL 5675 03:29:54,960 --> 03:29:58,680 ACCESS ISSUE FOR PEOPLE TO COME 5676 03:29:58,680 --> 03:30:02,280 FROM A RURAL AREA. 5677 03:30:02,280 --> 03:30:05,880 AGAIN WITH AURORA HEALTH, WIDE 5678 03:30:05,880 --> 03:30:06,720 DISTRIBUTION SO TRYING TO REACH 5679 03:30:06,720 --> 03:30:07,920 OUT TO OUR HEALTH SYSTEM AND 5680 03:30:07,920 --> 03:30:10,520 MAKE SURE THAT PEOPLE ARE AWARE 5681 03:30:10,520 --> 03:30:13,000 OF OUR SERVICES SO THAT WE CAN 5682 03:30:13,000 --> 03:30:16,760 GET PEOPLE WITH -UE CAN SEE THAT 5683 03:30:16,760 --> 03:30:18,400 AURORA IS TRADITIONALLY IN 5684 03:30:18,400 --> 03:30:21,200 WISCONSIN AND THAT SERVES 5685 03:30:21,200 --> 03:30:25,320 MILWAUKEE WHICH HAS A LARGE 5686 03:30:25,320 --> 03:30:27,600 INNER CITY PRESENCE AS WELL AS 5687 03:30:27,600 --> 03:30:28,640 INNER CITY CHICAGO PRESENCE. 5688 03:30:28,640 --> 03:30:31,240 SO TRYING TO REACH OUT TO THOSE 5689 03:30:31,240 --> 03:30:32,120 PROVIDERS IN THOSE AREAS AND 5690 03:30:32,120 --> 03:30:36,440 MAKE THEM AWARE OF OUR SERVICES 5691 03:30:36,440 --> 03:30:38,400 TO TRY TO IMPROVE OUR ACCESS TO 5692 03:30:38,400 --> 03:30:39,320 INDIVIDUALS THAT ARE NOT GETTING 5693 03:30:39,320 --> 03:30:41,480 INTO OUR CLINIC AT THE MOMENT. 5694 03:30:41,480 --> 03:30:43,400 ALSO LOOKING AT POSSIBILITIES OF 5695 03:30:43,400 --> 03:30:45,200 TAKING THE SHOW ON THE ROAD AT 5696 03:30:45,200 --> 03:30:45,400 TIMES. 5697 03:30:45,400 --> 03:30:48,160 WE ARE LOOKING INTO THAT, TAKE 5698 03:30:48,160 --> 03:30:50,920 IT INTO CHICAGO OR MILWAUKEE AND 5699 03:30:50,920 --> 03:30:52,960 NEIGHBORHOODS WHERE WE ARE NOT 5700 03:30:52,960 --> 03:30:53,560 GETTING THE INDIVIDUALS WITH 5701 03:30:53,560 --> 03:30:55,760 DOWN SYNDROME INTO OUR OFFICE 5702 03:30:55,760 --> 03:30:57,240 AND CAN WE GET OR REACH OUT TO 5703 03:30:57,240 --> 03:30:58,480 THEM WHETHER IT IS 5704 03:30:58,480 --> 03:31:00,560 TRANSPORTATION OR OTHER ISSUE 5705 03:31:00,560 --> 03:31:02,240 BEES THAT ARE NOT ALLOWING THEM 5706 03:31:02,240 --> 03:31:08,480 TO GET TO OUR CLINIC. 5707 03:31:08,480 --> 03:31:10,640 I'VE ALSO REACHED OUTPLACES OF 5708 03:31:10,640 --> 03:31:14,960 WORSHIP IN THE CITY, RELIGIOUS 5709 03:31:14,960 --> 03:31:17,000 ORGANIZATIONS AND OTHER WAYS TO 5710 03:31:17,000 --> 03:31:18,720 CONNECT WITH THEM AND CONNECT 5711 03:31:18,720 --> 03:31:19,520 WITH INDIVIDUALS WITH DOWN 5712 03:31:19,520 --> 03:31:23,240 SYNDROME THAT ARE NOT GETTING 5713 03:31:23,240 --> 03:31:23,480 SERVICE. 5714 03:31:23,480 --> 03:31:26,120 AND AGAIN, I HAVE NO MAGIC 5715 03:31:26,120 --> 03:31:26,360 BULLETS. 5716 03:31:26,360 --> 03:31:28,440 I'M NOT GOING TO SAY WE HAD 5717 03:31:28,440 --> 03:31:30,440 RESOUNDING SUCCESS WITH ANY OF 5718 03:31:30,440 --> 03:31:32,000 THIS BUT THINGS ARE CONTINUING 5719 03:31:32,000 --> 03:31:35,240 TO TRY AND WORK. 5720 03:31:35,240 --> 03:31:35,960 AND THEN THE PREVIOUS SESSION 5721 03:31:35,960 --> 03:31:37,680 HAD MENTIONED SPECIAL OLYMPICS. 5722 03:31:37,680 --> 03:31:40,720 HI SOME CONVERSATIONS WITH THE 5723 03:31:40,720 --> 03:31:42,480 SPECIAL OLYMPICS FOLKS. 5724 03:31:42,480 --> 03:31:46,080 ADVOCATE HAS BEEN INVOLVED IN 5725 03:31:46,080 --> 03:31:49,280 THE MED FEST PROGRAM THAT DOES 5726 03:31:49,280 --> 03:31:49,600 PHYSICALS. 5727 03:31:49,600 --> 03:31:51,640 I HAVE GONE DOWN TO THE UNITED 5728 03:31:51,640 --> 03:31:53,520 CENTER WHERE THE HAWKS -- 5729 03:31:53,520 --> 03:31:56,480 BLACKHAWKS AND BULLS PLAY AND 5730 03:31:56,480 --> 03:31:59,960 MED FEST THING IS EVERY YEAR, TO 5731 03:31:59,960 --> 03:32:02,200 DO THESE SPECIAL OLYMPICS 5732 03:32:02,200 --> 03:32:02,440 PHYSICALS. 5733 03:32:02,440 --> 03:32:05,280 AND MANY OF THOSE PARTICIPANTS 5734 03:32:05,280 --> 03:32:07,840 COME FROM INNER CITY AND CHICAGO 5735 03:32:07,840 --> 03:32:09,640 AND ARE THERE WAYS WE CAN 5736 03:32:09,640 --> 03:32:12,320 FOLLOW-UP WITH THEM AND REACH 5737 03:32:12,320 --> 03:32:15,120 OUT TO THEM AND PROVIDERS. 5738 03:32:15,120 --> 03:32:17,920 LOOKING AT WAYS TO INCLUDE THEM 5739 03:32:17,920 --> 03:32:18,400 IN HEALTH CARE. 5740 03:32:18,400 --> 03:32:20,200 AND THEN MY HOPE THEN IS AGAIN 5741 03:32:20,200 --> 03:32:22,520 AS A SECONDARY GAIN, WOULD BE 5742 03:32:22,520 --> 03:32:25,480 HOPEFULLY WE CAN GET MORE PEOPLE 5743 03:32:25,480 --> 03:32:28,840 PARTICIPATING IN RESEARCH AS 5744 03:32:28,840 --> 03:32:29,280 WELL. 5745 03:32:29,280 --> 03:32:33,280 NEXT SLIDE. 5746 03:32:33,280 --> 03:32:33,960 >> DR., BRIAN CHICOINE JUST A 5747 03:32:33,960 --> 03:32:35,200 MESSAGE TO SLOW DOWN A LITTLE 5748 03:32:35,200 --> 03:32:35,880 BIT WITH THE INTERPRETER. 5749 03:32:35,880 --> 03:32:40,480 THEY ARE TRYING TO CATCH-UP. 5750 03:32:40,480 --> 03:32:40,920 THANK YOU VERY MUCH. 5751 03:32:40,920 --> 03:32:44,960 >> THANK YOU FOR THROWING 5752 03:32:44,960 --> 03:32:46,440 SOMETHING. 5753 03:32:46,440 --> 03:32:48,400 SO, AGAIN WE ARE LOOKING AT 5754 03:32:48,400 --> 03:32:49,680 OTHER WAYS TO SERVE THE 5755 03:32:49,680 --> 03:32:50,320 POPULATION. 5756 03:32:50,320 --> 03:32:54,360 WE HAVE AN ONLINE RESOURCE 5757 03:32:54,360 --> 03:32:54,600 LIBRARY. 5758 03:32:54,600 --> 03:32:57,520 WE HAVE AN EDUCATIONAL PROJECT 5759 03:32:57,520 --> 03:33:03,320 WITH LU MIND-IDSC. 5760 03:33:03,320 --> 03:33:06,960 DR. SCOTT GO, THE DOWN SYNDROME 5761 03:33:06,960 --> 03:33:07,560 CLINIC TO YOU. 5762 03:33:07,560 --> 03:33:09,320 ANOTHER WAY TO REACH OUT TO 5763 03:33:09,320 --> 03:33:10,000 FAMILIES THAT MAY NOT BE GETTING 5764 03:33:10,000 --> 03:33:13,000 TO CLINICS. 5765 03:33:13,000 --> 03:33:15,360 GLOBAL DS FOUNDATION HAS A 5766 03:33:15,360 --> 03:33:16,240 NUMBER OF PROJECTS THEY ARE 5767 03:33:16,240 --> 03:33:18,760 WORKING ON TO TRY TO SERVE MORE 5768 03:33:18,760 --> 03:33:22,440 PEOPLE, INCLUDING THE HEALTH 5769 03:33:22,440 --> 03:33:24,000 CARE AND BENEFIT OF 5770 03:33:24,000 --> 03:33:24,520 PARTICIPATING IN. 5771 03:33:24,520 --> 03:33:26,880 AND AS A MEMBER OF THE DOWN 5772 03:33:26,880 --> 03:33:28,000 SYNDROME MEDICAL INTEREST GROUP, 5773 03:33:28,000 --> 03:33:29,280 A NUMBER OF THINGS WE ARE 5774 03:33:29,280 --> 03:33:31,000 WORKING ON AND HOPING TO SHARE 5775 03:33:31,000 --> 03:33:33,320 WITH YOU IN THE COMING MONTHS 5776 03:33:33,320 --> 03:33:36,760 THAT WE ARE WORKING ON TO TRY TO 5777 03:33:36,760 --> 03:33:38,360 SUPPORT PROVIDERS ACROSS THE 5778 03:33:38,360 --> 03:33:45,200 COUNTRY WHO ARE 95% THAT THEIR 5779 03:33:45,200 --> 03:33:46,320 PATIENTS DON'T HAVE ACCESS. 5780 03:33:46,320 --> 03:33:47,720 AND HOPEFULLY AS WE EXPAND CARE 5781 03:33:47,720 --> 03:33:48,800 OF THESE INDIVIDUALS, THE 5782 03:33:48,800 --> 03:33:51,360 RESEARCH WILL FOLLOW AS I 5783 03:33:51,360 --> 03:33:54,080 MENTIONED. 5784 03:33:54,080 --> 03:33:56,520 NEXT SLIDE. 5785 03:33:56,520 --> 03:33:57,000 AND THAT'S IT. 5786 03:33:57,000 --> 03:34:01,160 I THINK I WAS EVEN WITHIN MY 5787 03:34:01,160 --> 03:34:05,800 TIMEFRAME. 5788 03:34:05,800 --> 03:34:09,600 >> THANK YOU. 5789 03:34:09,600 --> 03:34:12,160 IT WAS VERY IMPORTANT MESSAGE 5790 03:34:12,160 --> 03:34:13,560 AND THE EFFORTS TO INCREASE THE 5791 03:34:13,560 --> 03:34:14,600 DIVERSITY OF INDIVIDUALS COMING 5792 03:34:14,600 --> 03:34:19,480 TO YOUR CLINIC OR PART OF ANY 5793 03:34:19,480 --> 03:34:21,280 RESEARCH PROJECTS, JUST DON'T 5794 03:34:21,280 --> 03:34:22,320 HAPPEN ON THEIR OWN. 5795 03:34:22,320 --> 03:34:24,040 HAVE TO BE AWARE OF IT. 5796 03:34:24,040 --> 03:34:27,440 YOU HAVE TO THINK THROUGH WAYS 5797 03:34:27,440 --> 03:34:32,400 TO REALLY REACH THE VERY, VERY 5798 03:34:32,400 --> 03:34:34,840 BROAD POPULATION AMONG ALL 5799 03:34:34,840 --> 03:34:35,720 ETHNIC GROUPS. 5800 03:34:35,720 --> 03:34:36,240 SO THANK YOU VERY MUCH. 5801 03:34:36,240 --> 03:34:39,320 VERY, VERY INTERESTING 5802 03:34:39,320 --> 03:34:39,680 PRESENTATION. 5803 03:34:39,680 --> 03:34:43,880 NEXT PRESENTATION WILL BE BY 5804 03:34:43,880 --> 03:34:45,920 DR. ELENA GRIGORENKO WHO 5805 03:34:45,920 --> 03:34:47,560 CURRENTLY, I BELIEVE IS AT THE 5806 03:34:47,560 --> 03:34:50,960 UNIVERSITY OF HOUSTON. 5807 03:34:50,960 --> 03:34:52,920 SHE HAS MULTIPLE DOCTORAL 5808 03:34:52,920 --> 03:34:54,720 DEGREES AND HAS PUBLISHED MORE 5809 03:34:54,720 --> 03:34:57,680 THAN 500 PEER-REVIEWED ARTICLES, 5810 03:34:57,680 --> 03:34:58,800 BOOK CHAPTERS AND RECEIVED 5811 03:34:58,800 --> 03:35:01,880 MULTIPLE PROFESSIONAL AWARDS FOR 5812 03:35:01,880 --> 03:35:08,120 HER WORK ALL AROUND THE GLOBE. 5813 03:35:08,120 --> 03:35:10,800 I DON'T BELIEVE THAT DR. ELENA 5814 03:35:10,800 --> 03:35:14,200 GRIGORENKO IS GOING TO BE ABLE 5815 03:35:14,200 --> 03:35:18,240 TO STAY AROUND FOR THE QUESTION 5816 03:35:18,240 --> 03:35:21,320 AND ANSWER SO DR. PHIL THUMA, A 5817 03:35:21,320 --> 03:35:25,440 COLLEAGUE, AND IS A SENIOR 5818 03:35:25,440 --> 03:35:28,560 SCIENTIFIC ADVISOR AT THE MOCKA 5819 03:35:28,560 --> 03:35:29,240 RESEARCH TRUST AND AUTHOR AND 5820 03:35:29,240 --> 03:35:32,600 CO-AUTHOR OF MORE THAN 100 5821 03:35:32,600 --> 03:35:33,320 PUBLICATIONS AND SCIENTIFIC 5822 03:35:33,320 --> 03:35:34,080 JOURNALS, WILL BE AVAILABLE TO 5823 03:35:34,080 --> 03:35:39,960 ANSWER ANY QUESTIONS FROM 5824 03:35:39,960 --> 03:35:40,280 PARTICIPANTS. 5825 03:35:40,280 --> 03:35:42,840 PLEASE, DR. ELENA GRIGORENKO. 5826 03:35:42,840 --> 03:35:43,880 >> ELENA GRIGORENKO: THANK YOU 5827 03:35:43,880 --> 03:35:45,000 VERY MUCH. 5828 03:35:45,000 --> 03:35:46,080 REALLY APPRECIATE THE 5829 03:35:46,080 --> 03:35:47,360 INTRODUCTION AND I HOPE THAT YOU 5830 03:35:47,360 --> 03:35:53,480 CAN HEAR ME AND YOU CAN SEE ME, 5831 03:35:53,480 --> 03:35:53,920 RIGHT? 5832 03:35:53,920 --> 03:35:54,160 THANK YOU. 5833 03:35:54,160 --> 03:35:56,960 SO I WOULD ALSO LIKE TO 5834 03:35:56,960 --> 03:36:03,400 INTRODUCE SOME OTHER MEMBERS OF 5835 03:36:03,400 --> 03:36:05,640 OUR TEAM. 5836 03:36:05,640 --> 03:36:07,720 DR. TAN IS AROUND AS WELL AND 5837 03:36:07,720 --> 03:36:10,080 SHE COMMENTED TO ME THAT IT'S 5838 03:36:10,080 --> 03:36:13,280 BEEN A FASCINATING AFTERNOON. 5839 03:36:13,280 --> 03:36:13,960 I APOLOGIZE. 5840 03:36:13,960 --> 03:36:14,920 I'M IN A DIFFERENT MEETING AND I 5841 03:36:14,920 --> 03:36:18,720 WAS THERE ALL DAY YESTERDAY AND 5842 03:36:18,720 --> 03:36:20,040 ALSO I FOUND THAT MEETING VERY 5843 03:36:20,040 --> 03:36:21,520 INTERESTING. 5844 03:36:21,520 --> 03:36:27,720 SO THANK YOU VERY MUCH FOR THIS. 5845 03:36:27,720 --> 03:36:33,320 SO I WILL TAKE YOU ON A TRIP TO 5846 03:36:33,320 --> 03:36:33,600 RUSSIA. 5847 03:36:33,600 --> 03:36:38,880 WE HAVE BEEN FORTUNATE TO ENJOY 5848 03:36:38,880 --> 03:36:41,440 GREAT SUPPORT FROM NIH FOR A 5849 03:36:41,440 --> 03:36:43,120 NUMBER OF YEARS. 5850 03:36:43,120 --> 03:36:51,400 WE HAVE FOCUSED ON DEVELOPMENTAL 5851 03:36:51,400 --> 03:36:52,120 DISABILITIES PARTICULARLY THE 5852 03:36:52,120 --> 03:37:00,200 STUDY I WILL BE TALKING ABOUT 5853 03:37:00,200 --> 03:37:02,440 TODAY IS A STUDY OF LEARNING 5854 03:37:02,440 --> 03:37:03,040 DISABILITIES. 5855 03:37:03,040 --> 03:37:05,800 WE ALSO WORK WITH HIV/AIDS OVER 5856 03:37:05,800 --> 03:37:08,840 ANS AND NOW WE -- ORPHANS AND 5857 03:37:08,840 --> 03:37:13,640 NOW WE ARE GOING TO START 5858 03:37:13,640 --> 03:37:16,280 WORKING WITH CHILDREN WITH 5859 03:37:16,280 --> 03:37:16,880 INTELLECTUAL DISABILITIES. 5860 03:37:16,880 --> 03:37:21,840 NEXT SLIDE, PLEASE. 5861 03:37:21,840 --> 03:37:25,720 SO, AS WE PREPARE FOR THIS 5862 03:37:25,720 --> 03:37:27,800 CONVERSATION, WE OF COURSE HAVE 5863 03:37:27,800 --> 03:37:30,720 DONE SOME RESEARCH LOOKING AT 5864 03:37:30,720 --> 03:37:34,400 WHAT IS KNOWN ABOUT DOWN 5865 03:37:34,400 --> 03:37:36,200 SYNDROME IN AFRICA. 5866 03:37:36,200 --> 03:37:37,160 AND VERY SUGGESTS KNOWN. 5867 03:37:37,160 --> 03:37:41,200 THERE ARE SOME STUDIES, 5868 03:37:41,200 --> 03:37:43,680 PRIMARILY IN SOUTH AFRICA BUT 5869 03:37:43,680 --> 03:37:49,560 REALLY THERE IS FEW PUBLICAT 5870 03:37:49,560 --> 03:37:49,880 PUBLICATIONS. 5871 03:37:49,880 --> 03:37:56,920 NO TRUE WORK AND NO TRUE 5872 03:37:56,920 --> 03:37:58,240 LARGE-SCALE EFFORTS. 5873 03:37:58,240 --> 03:37:59,160 WHAT IS KNOWN SUGGESTS THAT 5874 03:37:59,160 --> 03:38:01,800 THERE IS NO REASON TO BELIEF 5875 03:38:01,800 --> 03:38:03,560 THAT THE PREVALENCE OF DOWN 5876 03:38:03,560 --> 03:38:07,880 SYNDROME IS DIFFERENT FROM THAT 5877 03:38:07,880 --> 03:38:09,440 WORLDWIDE. 5878 03:38:09,440 --> 03:38:15,000 SO IT APPEARS TO APPROXIMATELY 5879 03:38:15,000 --> 03:38:19,720 ONE-700 BUT AGAIN, WE JUST DON'T 5880 03:38:19,720 --> 03:38:21,400 HAVE ENOUGH DATA, RELIABLE DATA, 5881 03:38:21,400 --> 03:38:23,800 TO LOOK AT THIS. 5882 03:38:23,800 --> 03:38:28,320 SO, WHAT I'M TRYING TO DO TODAY 5883 03:38:28,320 --> 03:38:33,200 IS TO COMMENT BRIEFLY ON OUR 5884 03:38:33,200 --> 03:38:37,040 EXPERIENCE WORKING AT THIS 5885 03:38:37,040 --> 03:38:40,160 TRUST, WHICH IS IN PART 5886 03:38:40,160 --> 03:38:45,320 ESTABLISHED A LAB BY DR. 5887 03:38:45,320 --> 03:38:45,640 [ INAUDIBLE ] 5888 03:38:45,640 --> 03:38:48,240 AND WHAT IT HAS BEEN SO 5889 03:38:48,240 --> 03:38:50,440 WELCOMING AND REMARKABLY 5890 03:38:50,440 --> 03:38:54,120 PRODUCTIVE FORURS TO WORK THERE. 5891 03:38:54,120 --> 03:38:55,960 IT'S AN OVERSTATEMENT OF COURSE 5892 03:38:55,960 --> 03:38:58,920 BUT I WOULD LIKE TO SAY THAT IN 5893 03:38:58,920 --> 03:39:01,520 THIS ENVIRONMENT, WE SHOULD BE 5894 03:39:01,520 --> 03:39:04,400 ABLE TO DO REASONABLY WELL 5895 03:39:04,400 --> 03:39:08,160 DESIGNED, REASONABLY WELL 5896 03:39:08,160 --> 03:39:09,640 PERFORMED, A STUDY OF DOWN 5897 03:39:09,640 --> 03:39:11,760 SYNDROME IN AFRICA. 5898 03:39:11,760 --> 03:39:18,480 PLEASE ADVANCE THE SLIDES. 5899 03:39:18,480 --> 03:39:20,600 THE POINT OF TODAY IS TO SHARE 5900 03:39:20,600 --> 03:39:23,040 WITH YOU SOME OF THE MAJOR 5901 03:39:23,040 --> 03:39:25,400 PRINCIPLES OF ENGAGEMENT WITH 5902 03:39:25,400 --> 03:39:27,400 EXERCISE AND TO SHOW YOU BITS 5903 03:39:27,400 --> 03:39:33,280 AND PIECES OF OUR DATA THAT 5904 03:39:33,280 --> 03:39:34,880 INDICATE OUR -- THE FIRST 5905 03:39:34,880 --> 03:39:35,840 OBSERVATION IS WORKING IN 5906 03:39:35,840 --> 03:39:38,000 LOW-INCOME COUNTRIES IS REALLY 5907 03:39:38,000 --> 03:39:40,960 AN EXCITING AND HIGHLY REWARDING 5908 03:39:40,960 --> 03:39:44,760 CHALLENGE BUT IT IS CHALLENGING. 5909 03:39:44,760 --> 03:39:47,840 AND QUITE A FEW REASONS AND 5910 03:39:47,840 --> 03:39:49,320 EXPLANATIONS FOR WHY IT IS A 5911 03:39:49,320 --> 03:39:50,040 CHALLENGE. 5912 03:39:50,040 --> 03:39:52,680 NEXT SLIDE. 5913 03:39:52,680 --> 03:39:57,280 THE STUDIES THAT GAVE US SOME 5914 03:39:57,280 --> 03:40:00,280 INFORMATION TO PRESENT TODAY 5915 03:40:00,280 --> 03:40:05,400 ACTUALLY ENGAGED 36 SCHOOLS AND 5916 03:40:05,400 --> 03:40:11,600 ABOUT SLIGHTLY OVER 4.5000 KIDS, 5917 03:40:11,600 --> 03:40:17,360 ALL IN THE RURAL AREA OF THE 5918 03:40:17,360 --> 03:40:17,560 TRUST. 5919 03:40:17,560 --> 03:40:20,960 SO AS WE WERE FOCUSING ON 5920 03:40:20,960 --> 03:40:22,640 LEARNING DISABILITIES IN GENERAL 5921 03:40:22,640 --> 03:40:26,080 AND READING DISABILITIES IN 5922 03:40:26,080 --> 03:40:30,320 PARTICULAR, WE HAD A LARGE-SCALE 5923 03:40:30,320 --> 03:40:31,280 SCREENING EFFORT THAT IDENTIFIED 5924 03:40:31,280 --> 03:40:36,280 THOSE WEAKNESSES AND THEN WE 5925 03:40:36,280 --> 03:40:39,760 HAVE A SET OF INCLUSION 5926 03:40:39,760 --> 03:40:40,040 CRITERIA. 5927 03:40:40,040 --> 03:40:41,880 OUR INCLUSION CRITERIA, AND THIS 5928 03:40:41,880 --> 03:40:48,040 IS IMPORTANT, HAD TO INCLUDE 5929 03:40:48,040 --> 03:40:49,560 EITHER 5930 03:40:49,560 --> 03:40:54,280 25 INDICATORS OF HIGH-LEVEL 5931 03:40:54,280 --> 03:40:56,480 PERFORMANCE IN THIS 5932 03:40:56,480 --> 03:41:01,160 READING-RELATED TASKS, OR THE 5933 03:41:01,160 --> 03:41:08,040 BOTTOM INDICATORS OF THIS 25 5934 03:41:08,040 --> 03:41:12,920 INDICATORS FOR LOWER-PERCENT 5935 03:41:12,920 --> 03:41:13,280 RATE. 5936 03:41:13,280 --> 03:41:17,320 OUR EXCLUSION CRITERIA WERE 5937 03:41:17,320 --> 03:41:25,360 FOCUSED ON IQ, BMI AND HEARING 5938 03:41:25,360 --> 03:41:26,160 AND VISUAL CAPACITIES. 5939 03:41:26,160 --> 03:41:30,600 WE EXCLUDED KIDS WITH VISUAL 5940 03:41:30,600 --> 03:41:30,880 PROBLEMS. 5941 03:41:30,880 --> 03:41:32,320 THE HEARING ISSUES WORKED OUT 5942 03:41:32,320 --> 03:41:34,920 BUT I'M NOT GOING TO FOCUS ON 5943 03:41:34,920 --> 03:41:35,680 THOSE ISSUES. 5944 03:41:35,680 --> 03:41:39,800 SO, AT THE END OF THIS SCREENING 5945 03:41:39,800 --> 03:41:43,280 EXERCISE, WE GENERATED TWO 5946 03:41:43,280 --> 03:41:45,360 GROUPS OF CHILDREN WITH AND 5947 03:41:45,360 --> 03:41:46,600 WITHOUT SPECIFIC READING 5948 03:41:46,600 --> 03:41:47,840 DISABILITIES. 5949 03:41:47,840 --> 03:41:51,080 AND THEN, WE SUBJECTED THESE 5950 03:41:51,080 --> 03:41:56,200 KIDS TO A REALLY LONG ASSESSMENT 5951 03:41:56,200 --> 03:42:02,320 BATTERY. 5952 03:42:02,320 --> 03:42:12,360 SO 5953 03:42:13,040 --> 03:42:22,080 THIS IS OUR SAMPLE 5954 03:42:22,080 --> 03:42:29,720 . 5955 03:42:29,720 --> 03:42:32,720 HALF AND HALF DISTRIBUTION. 5956 03:42:32,720 --> 03:42:37,280 AND WE DID INTEND TO ENROLL 5957 03:42:37,280 --> 03:42:40,440 6-YEAR-OLD OR A 20-YEAR-OLD BUT 5958 03:42:40,440 --> 03:42:42,680 THAT'S WHAT YOU FIND IN RURAL 5959 03:42:42,680 --> 03:42:47,600 AFRICA WHEN YOU ARE ENROLLING 5960 03:42:47,600 --> 03:42:47,840 GRADES. 5961 03:42:47,840 --> 03:42:49,800 BECAUSE THERE IS NO PERFECT 5962 03:42:49,800 --> 03:42:51,280 CORRELATION BETWEEN AGES AND 5963 03:42:51,280 --> 03:42:52,800 GRADES IN AFRICA. 5964 03:42:52,800 --> 03:43:01,120 NEXT SLIDE, PLEASE. 5965 03:43:01,120 --> 03:43:02,160 SO I HOPE YOU AGREE WITH ME THIS 5966 03:43:02,160 --> 03:43:07,720 IS A SAMPLE OF RESPECTFUL 5967 03:43:07,720 --> 03:43:07,960 STATUS. 5968 03:43:07,960 --> 03:43:15,800 AND WE, IN OUR CLOSE CORPORATION 5969 03:43:15,800 --> 03:43:16,720 WITH PHIL AND HIS COLLEAGUES IN 5970 03:43:16,720 --> 03:43:18,920 RUSSIA, BEGIN RESEARCH PROJECTS 5971 03:43:18,920 --> 03:43:23,040 AND THIS IS OUR THIRD PROJECT IN 5972 03:43:23,040 --> 03:43:23,600 THAT LOCATION BY SETTING UP 5973 03:43:23,600 --> 03:43:28,240 MEETINGS WITH REGIONAL CHIEFS 5974 03:43:28,240 --> 03:43:29,800 AND WE SECURE THEIR PERMISSION 5975 03:43:29,800 --> 03:43:31,360 TO WORK IN THEIR AREAS. 5976 03:43:31,360 --> 03:43:37,800 NEXT SLIDE, PLEASE. 5977 03:43:37,800 --> 03:43:40,000 THE NEXT THING WE DO IS LOOK 5978 03:43:40,000 --> 03:43:43,000 AROUND AND FIND MEMBERS OF LOCAL 5979 03:43:43,000 --> 03:43:43,640 COMMUNITY WHO ARE INTERESTED IN 5980 03:43:43,640 --> 03:43:49,440 WORKING WITH US. 5981 03:43:49,440 --> 03:43:51,440 AND THESE MEMBERS ARE RECOGNIZED 5982 03:43:51,440 --> 03:43:54,560 AND TRUSTED IN SURROUNDING 5983 03:43:54,560 --> 03:43:55,880 VILLAGES AND THEY BENEFIT. 5984 03:43:55,880 --> 03:43:58,120 SOME OF THEM WORKED WITH US FOR 5985 03:43:58,120 --> 03:43:59,680 YEARS AND HAVE BEEN IN 5986 03:43:59,680 --> 03:44:01,560 CONTINUOUS TRAINING WITH 5987 03:44:01,560 --> 03:44:02,520 SUPPORTING THEIR MASTER'S 5988 03:44:02,520 --> 03:44:05,800 DEGREES AND PH.D.s AND MANY OF 5989 03:44:05,800 --> 03:44:07,920 THEM RETURNED TO THEIR 5990 03:44:07,920 --> 03:44:09,560 COMMUNITIES. 5991 03:44:09,560 --> 03:44:20,240 THIS COMMUNITY AND SOME OTHER 5992 03:44:20,240 --> 03:44:20,800 COMMUNITIES. 5993 03:44:20,800 --> 03:44:23,640 WE GO TO OUR PARTICIPANTS 5994 03:44:23,640 --> 03:44:25,040 WHEREVER IT IS CONVENIENT AND 5995 03:44:25,040 --> 03:44:29,280 APPROPRIATE FOR THEM. 5996 03:44:29,280 --> 03:44:32,400 AND THIS IS A MOTHER, THE 5997 03:44:32,400 --> 03:44:34,880 TARGETED CHILD IS AT SCHOOL BUT 5998 03:44:34,880 --> 03:44:39,440 SHE HAS ANOTHER LITTLE BOY WHO 5999 03:44:39,440 --> 03:44:42,240 TRAVELS WITH HER TO OUR 6000 03:44:42,240 --> 03:44:42,680 ASSESSMENT SESSIONS. 6001 03:44:42,680 --> 03:44:47,920 NEXT SLIDE, PLEASE. 6002 03:44:47,920 --> 03:44:51,760 WE USED OUR FRIENDLY CONSULT 6003 03:44:51,760 --> 03:44:52,640 READOPTED ASSESSMENTS. 6004 03:44:52,640 --> 03:44:54,720 WE WORK HARD ON THAT. 6005 03:44:54,720 --> 03:44:58,960 WE ARE WELL CONNECTED IN THE 6006 03:44:58,960 --> 03:45:01,120 COMMUNITY THAT WE WORK IN IN 6007 03:45:01,120 --> 03:45:01,360 AFRICA. 6008 03:45:01,360 --> 03:45:03,960 WE ARE SENSITIVE TO ALL KINDS OF 6009 03:45:03,960 --> 03:45:06,800 ISSUES PERTAINING TO 6010 03:45:06,800 --> 03:45:08,480 PSYCHOMETRICS OF THESE 6011 03:45:08,480 --> 03:45:10,480 ASSESSMENTS AND WE WORK VERY, 6012 03:45:10,480 --> 03:45:13,840 VERY HARD TO MAKE SURE THAT WE 6013 03:45:13,840 --> 03:45:17,080 KNOW WHAT WE'RE USING WHEN WE'RE 6014 03:45:17,080 --> 03:45:19,480 USING THESE INSTRUMENTS WITH OUR 6015 03:45:19,480 --> 03:45:21,480 KIDS. 6016 03:45:21,480 --> 03:45:24,400 NEXT SLIDE, PLEASE. 6017 03:45:24,400 --> 03:45:27,840 SO, THIS IS A RESULT OF OUR 6018 03:45:27,840 --> 03:45:29,240 SCREENING. 6019 03:45:29,240 --> 03:45:31,520 THIS IS FOR THE WHOLE SAMPLE. 6020 03:45:31,520 --> 03:45:41,320 YOU CAN SEE THAT IT'S 6021 03:45:41,320 --> 03:45:41,840 DISTRIBUTED. 6022 03:45:41,840 --> 03:45:42,440 THERE ARE SOME DEVIATIONS HERE 6023 03:45:42,440 --> 03:45:43,080 BUT THE INSTRUMENTS SEEM TO BE 6024 03:45:43,080 --> 03:45:44,640 WORKING AS INTENDED. 6025 03:45:44,640 --> 03:45:50,400 NEXT SLIDE, PLEASE. 6026 03:45:50,400 --> 03:45:51,880 SO WE WORK IN AREAS WHERE MOST 6027 03:45:51,880 --> 03:45:57,680 OF THE FAMILIES ARE -- WHERE 6028 03:45:57,680 --> 03:46:00,000 FAMILY BUDGETS ARE VERY LIMITED 6029 03:46:00,000 --> 03:46:02,160 TO SAY THE LEAST. 6030 03:46:02,160 --> 03:46:04,640 AND WE RESPECT THESE 6031 03:46:04,640 --> 03:46:05,320 LIMITATIONS. 6032 03:46:05,320 --> 03:46:07,640 WE ARE ON THE SAME LEVEL WITH 6033 03:46:07,640 --> 03:46:08,200 THESE FAMILIES. 6034 03:46:08,200 --> 03:46:12,720 WE HELP WHEN WE CAN. 6035 03:46:12,720 --> 03:46:13,320 BUT WE APPRECIATE THEIR HARD 6036 03:46:13,320 --> 03:46:17,320 EFFORTS TO SUPPORT THEIR 6037 03:46:17,320 --> 03:46:17,880 FAMILIES. 6038 03:46:17,880 --> 03:46:19,920 AND TO CULTIVATE THEIR BEAUTIFUL 6039 03:46:19,920 --> 03:46:21,320 LAND TOO. 6040 03:46:21,320 --> 03:46:29,720 NEXT SLIDE, PLEASE. 6041 03:46:29,720 --> 03:46:31,800 BUT, IF YOU LOOK AT THE 6042 03:46:31,800 --> 03:46:37,280 DISTRIBUTION, YOU CAN SEE THAT 6043 03:46:37,280 --> 03:46:39,840 POVERTY IS THERE. 6044 03:46:39,840 --> 03:46:40,200 IT'S PRESSING. 6045 03:46:40,200 --> 03:46:44,440 SO MOST OF THE KIDS ARE 6046 03:46:44,440 --> 03:46:44,800 UNDERNOURISHED. 6047 03:46:44,800 --> 03:46:48,440 NEXT SLIDE, PLEASE. 6048 03:46:48,440 --> 03:46:51,520 AND THIS IS THEIR HEAD 6049 03:46:51,520 --> 03:46:55,240 CIRCUMVENT FRANCE DATA. 6050 03:46:55,240 --> 03:46:57,320 -- CIRCUMFERENCE DATA. 6051 03:46:57,320 --> 03:46:58,440 AND NUTRITIONAL DEFICITS ARE 6052 03:46:58,440 --> 03:47:00,200 REAL THERE AS WELL. 6053 03:47:00,200 --> 03:47:03,760 NEXT SLIDE, PLEASE. 6054 03:47:03,760 --> 03:47:09,280 SO, GOING BACK TO THIS STUDY, I 6055 03:47:09,280 --> 03:47:12,160 WOULD LIKE TO REVISIT THE 6056 03:47:12,160 --> 03:47:13,280 EXCLUSION CRITERIA. 6057 03:47:13,280 --> 03:47:15,800 BY DEFINITION, WE EXCLUDED 6058 03:47:15,800 --> 03:47:21,880 CHILDREN WITH LOWER IQ. 6059 03:47:21,880 --> 03:47:30,200 WE WENT FROM 44500 CHILDREN AND 6060 03:47:30,200 --> 03:47:31,560 BECAUSE OF THE SPECIFICS OF THE 6061 03:47:31,560 --> 03:47:34,400 CHILDREN WE ARE LIKELY TO HAVE 6062 03:47:34,400 --> 03:47:36,360 EXCLUDED CHILDREN WITH 6063 03:47:36,360 --> 03:47:37,520 INTELLECTUAL DISABILITIES AND WE 6064 03:47:37,520 --> 03:47:39,840 ARE NOW BACK FOR THAT. 6065 03:47:39,840 --> 03:47:41,000 WE WANT TO WORK WITH THESE 6066 03:47:41,000 --> 03:47:44,720 CHILDREN IN A VERY TARGETED, 6067 03:47:44,720 --> 03:47:54,640 VERY PURPOSEFUL MANNER. 6068 03:47:54,640 --> 03:47:55,640 SO THE STUDY ASPECTS I'M GOING 6069 03:47:55,640 --> 03:47:58,080 TO FOCUS ON FOR THE NEXT FIVE 6070 03:47:58,080 --> 03:48:01,720 MINUTES OR SO ARE COMPLEX. 6071 03:48:01,720 --> 03:48:03,920 AND WE TAKE TIME AND EFFORT TO 6072 03:48:03,920 --> 03:48:07,320 EXPLAIN OUR RESEARCH REGARDLESS 6073 03:48:07,320 --> 03:48:09,120 OF OF THE COMPLEXITY. 6074 03:48:09,120 --> 03:48:11,680 AND THAT'S ONE OF THE PICTURES 6075 03:48:11,680 --> 03:48:13,720 OF THE INTERACTIONS BETWEEN THE 6076 03:48:13,720 --> 03:48:14,480 RESEARCH TRUST PERSONNEL WITH 6077 03:48:14,480 --> 03:48:15,520 THE LOCAL COMMUNITY. 6078 03:48:15,520 --> 03:48:21,040 NEXT SLIDE, PLEASE. 6079 03:48:21,040 --> 03:48:24,280 SO, WE HAVE MANAGED TO SECURE 6080 03:48:24,280 --> 03:48:29,320 GENETIC MATERIAL AT VERY FEW 6081 03:48:29,320 --> 03:48:33,520 REFUSALS. 6082 03:48:33,520 --> 03:48:36,080 WE STILL HAVE ONE OF THE LARGEST 6083 03:48:36,080 --> 03:48:42,720 SAMPLES KNOWN TO US, AT LEAST, 6084 03:48:42,720 --> 03:48:45,320 FROM THIS AREA. 6085 03:48:45,320 --> 03:48:51,760 NEXT SLIDE, PLEASE. 6086 03:48:51,760 --> 03:48:56,800 SO, AGAIN, BECAUSE WE EXCLUDED 6087 03:48:56,800 --> 03:48:59,440 INDIVIDUALS WITH INTELLECTUAL 6088 03:48:59,440 --> 03:49:00,320 DISABILITIES, OUR DISTRIBUTION 6089 03:49:00,320 --> 03:49:00,960 IS SHIFTING. 6090 03:49:00,960 --> 03:49:05,720 SO OUR GENOTYPE SAMPLE HAS 6091 03:49:05,720 --> 03:49:07,920 HIGHER IQ THAN OUR TOTAL SAMPLE. 6092 03:49:07,920 --> 03:49:12,080 NEXT SLIDE, PLEASE. 6093 03:49:12,080 --> 03:49:16,720 WE ARE ALWAYS GRATEFUL TO OUR 6094 03:49:16,720 --> 03:49:18,960 PARTICIPANTS ENGAGED IN RESEARCH 6095 03:49:18,960 --> 03:49:21,600 AND HERE YOU SEE WE ACTUALLY 6096 03:49:21,600 --> 03:49:25,040 HAVE IN THE PREVIOUS STUDY WE 6097 03:49:25,040 --> 03:49:27,080 WORKED WITH AMERICAN KIDS, HIGH 6098 03:49:27,080 --> 03:49:31,880 SCHOOL STUDENTS, FOR THEM TO GO 6099 03:49:31,880 --> 03:49:34,200 THROUGH ACTIONS TO GENERATE TO 6100 03:49:34,200 --> 03:49:36,480 BRING MANY, MANY SOCCER BALLS 6101 03:49:36,480 --> 03:49:40,720 BACK TO AFRICA AND THIS IS A 6102 03:49:40,720 --> 03:49:45,320 LETTER ADDRESSED TO THE PROJECT 6103 03:49:45,320 --> 03:49:47,160 DIRECTOR DR. GOREDY, THAT IS WHY 6104 03:49:47,160 --> 03:49:49,320 YOU SEE HER FIRST NAME THERE. 6105 03:49:49,320 --> 03:49:56,360 NEXT SLIDE, PLEASE. 6106 03:49:56,360 --> 03:49:56,880 SO OUT OF THESE GENOTYPED 6107 03:49:56,880 --> 03:49:57,840 INDIVIDUALS FOR THOSE WHO ARE 6108 03:49:57,840 --> 03:50:00,720 INTERESTED IN GENETICS, WE SEE A 6109 03:50:00,720 --> 03:50:06,160 LOT OF VARIATION IN SAMPLES. 6110 03:50:06,160 --> 03:50:12,720 THIS IS A GRAPH THAT SHOWS A 6111 03:50:12,720 --> 03:50:14,760 NUMBER OF VARIANTS IN A SAMPLE. 6112 03:50:14,760 --> 03:50:17,160 ALL THE 1300 INDIVIDUALS WE 6113 03:50:17,160 --> 03:50:17,760 LOOKED AT. 6114 03:50:17,760 --> 03:50:23,040 NEXT SLIDE, PLEASE. 6115 03:50:23,040 --> 03:50:25,040 SO THIS IS A REPRESENTATION OF 6116 03:50:25,040 --> 03:50:28,240 TYPES OF FINDINGS AND THEIR 6117 03:50:28,240 --> 03:50:28,440 RANGE. 6118 03:50:28,440 --> 03:50:32,320 SO THERE ARE SMALL ONES, BIG 6119 03:50:32,320 --> 03:50:36,240 ONES AND THERE ARE DELETIONS. 6120 03:50:36,240 --> 03:50:40,120 HOMOZYGOUS AND HETEROZYGOUS -- 6121 03:50:40,120 --> 03:50:41,920 NEXT SLIDE, PLEASE. 6122 03:50:41,920 --> 03:50:45,320 THIS IS A VISUAL REPRESENTATION 6123 03:50:45,320 --> 03:50:46,560 OF DISTRIBUTIONS. 6124 03:50:46,560 --> 03:50:51,160 THE GRAY WOULD SHOW NORMAL 6125 03:50:51,160 --> 03:50:56,520 GENOTYPE BUT YOU SEE MULTIPLE 6126 03:50:56,520 --> 03:50:57,120 DUPLICATIONS. 6127 03:50:57,120 --> 03:50:59,320 DELETIONS ARE SHOWN IN PINK AND 6128 03:50:59,320 --> 03:51:03,360 GREEN AND DUPLICATIONS ARE SHOWN 6129 03:51:03,360 --> 03:51:05,440 IN ORANGE AND BLUE. 6130 03:51:05,440 --> 03:51:09,040 NEXT SLIDE, PLEASE. 6131 03:51:09,040 --> 03:51:10,440 THIS IS DISTRIBUTED THROUGH THE 6132 03:51:10,440 --> 03:51:10,960 GENOME. 6133 03:51:10,960 --> 03:51:15,520 YOU SEE MOST OF THEM ARE FAIRLY 6134 03:51:15,520 --> 03:51:17,560 SHORT BUT THERE ARE SOME LONG AS 6135 03:51:17,560 --> 03:51:17,960 WELL. 6136 03:51:17,960 --> 03:51:21,320 NEXT SLIDE, PLEASE. 6137 03:51:21,320 --> 03:51:25,320 THIS IS AN IMPORTANT SLIDE 6138 03:51:25,320 --> 03:51:28,360 BECAUSE IT SUMMARIZES ALL OF THE 6139 03:51:28,360 --> 03:51:32,040 FINDINGS ON THE HUMAN GENOME. 6140 03:51:32,040 --> 03:51:34,080 NEXT SLIDE, PLEASE. 6141 03:51:34,080 --> 03:51:38,920 AND WE DID NOT SEE IN THIS 6142 03:51:38,920 --> 03:51:41,800 SAMPLE, AGAIN INDIVIDUALS WITH 6143 03:51:41,800 --> 03:51:44,640 INTELLECTUAL DISABILITY WERE 6144 03:51:44,640 --> 03:51:45,280 EXCLUDED IN INDIVIDUALS WITH 6145 03:51:45,280 --> 03:51:46,000 DOWN SYNDROME. 6146 03:51:46,000 --> 03:51:48,240 AND THINKING ABOUT THE FREQUENCY 6147 03:51:48,240 --> 03:51:54,840 OF DOWN SYNDROME, WE DID NOT 6148 03:51:54,840 --> 03:51:55,120 ANTICIPATE. 6149 03:51:55,120 --> 03:52:01,480 THAT'S HOW INDIVIDUALS WITH DOWN 6150 03:52:01,480 --> 03:52:03,520 SYNDROME WOULD HAVE LOOKED IN 6151 03:52:03,520 --> 03:52:04,720 TERMS OF -- NEXT SLIDE, PLEASE. 6152 03:52:04,720 --> 03:52:07,800 SO, YOU CAN SEE THERE IS A LOT 6153 03:52:07,800 --> 03:52:09,280 GOING ON IN THESE GENOMES. 6154 03:52:09,280 --> 03:52:17,560 NEXT SLIDE, PLEASE. 6155 03:52:17,560 --> 03:52:22,960 AND CHROMOSOME 15 ARE MANY 6156 03:52:22,960 --> 03:52:23,960 DEVELOPMENTAL SYNDROMES KNOWN 6157 03:52:23,960 --> 03:52:26,320 THROUGH VARIOUS REGISTRIES BUT 6158 03:52:26,320 --> 03:52:29,920 WE DID NOT SEE ANY OF THIS IN 6159 03:52:29,920 --> 03:52:30,360 THAT SAMPLE. 6160 03:52:30,360 --> 03:52:36,440 OF COURSE THE SAMPLE WAS 6161 03:52:36,440 --> 03:52:39,000 SELECTED FOR PARTICULAR 6162 03:52:39,000 --> 03:52:39,360 PHENOTYPES. 6163 03:52:39,360 --> 03:52:42,760 NEXT SLIDE, PLEASE. 6164 03:52:42,760 --> 03:52:49,000 SO WE REGISTERED SOME PATHOGENIC 6165 03:52:49,000 --> 03:52:50,840 REGIONS, DIFFERENT SIZES AND 6166 03:52:50,840 --> 03:52:52,000 DIFFERENT LOCATIONS. 6167 03:52:52,000 --> 03:52:54,640 THIS DATE ADD COMPARABLE DATA, 6168 03:52:54,640 --> 03:52:56,720 NOT EASILY AVAILABLE SO WE THINK 6169 03:52:56,720 --> 03:52:58,320 THAT THIS IS WHAT WE WILL 6170 03:52:58,320 --> 03:52:59,520 CONTRIBUTE TO THE LITERATURE 6171 03:52:59,520 --> 03:53:02,320 SIMPLY BY CAPTURING THE 6172 03:53:02,320 --> 03:53:02,840 DIVERSITY. 6173 03:53:02,840 --> 03:53:06,760 NEXT SLIDE, PLEASE. 6174 03:53:06,760 --> 03:53:09,320 WE HAVE ALSO INVESTIGATED SOME 6175 03:53:09,320 --> 03:53:11,440 POPULATION DYNAMICS IN THIS 6176 03:53:11,440 --> 03:53:13,320 POPULATION. 6177 03:53:13,320 --> 03:53:15,640 SO WE SEE TWO DIFFERENT 6178 03:53:15,640 --> 03:53:17,640 GROUPINGS IN THIS SAMPLE OF 6179 03:53:17,640 --> 03:53:21,240 CHILDREN AND SOME ARE MORE LOCAL 6180 03:53:21,240 --> 03:53:23,640 AND MORE RELATED TO EACH OTHER. 6181 03:53:23,640 --> 03:53:27,880 AND SOME PROBABLY REFLECT AN 6182 03:53:27,880 --> 03:53:36,320 ONGOING IN COMING MIGRATION. 6183 03:53:36,320 --> 03:53:39,400 SO WHAT I WAS TRYING TO SAY IS, 6184 03:53:39,400 --> 03:53:48,160 WE HAVE LEARNED BOTH FROM WORK 6185 03:53:48,160 --> 03:53:49,240 IN THIS AND OTHER LOCATIONS IN 6186 03:53:49,240 --> 03:53:52,440 AFRICA AND ELSEWHERE IN ASIA, 6187 03:53:52,440 --> 03:53:55,680 THAT THESE POPULATIONS ISSUE 6188 03:53:55,680 --> 03:53:56,960 VERY INTERESTING SIZE. 6189 03:53:56,960 --> 03:53:58,920 WE KNOW VERY LITTLE ABOUT THEM 6190 03:53:58,920 --> 03:54:02,280 BUT WE NEED TO REALLY WORK WITH 6191 03:54:02,280 --> 03:54:09,320 THEM IN A VERY RESPECTFUL AND 6192 03:54:09,320 --> 03:54:09,720 CONSIDERATE STYLE. 6193 03:54:09,720 --> 03:54:13,800 AND THAT ALLOWS US TO COME BACK 6194 03:54:13,800 --> 03:54:15,160 AND TO EXPLAIN CONTINUE WITH OUR 6195 03:54:15,160 --> 03:54:17,120 COOPERATION IN ORDER TO SERVE 6196 03:54:17,120 --> 03:54:17,440 AND SUPPORT. 6197 03:54:17,440 --> 03:54:21,160 AND I JUST LOVE THAT PICTURE ON 6198 03:54:21,160 --> 03:54:22,320 THE LEFT. 6199 03:54:22,320 --> 03:54:24,840 RIGHT FROM THERE AND CAPTURES A 6200 03:54:24,840 --> 03:54:25,280 LOT. 6201 03:54:25,280 --> 03:54:29,760 NEXT SLIDE, PLEASE. 6202 03:54:29,760 --> 03:54:31,760 SO TO SUMMARIZE EVERY SINGLE 6203 03:54:31,760 --> 03:54:34,720 POINT I MENTIONED, WE THINK IT'S 6204 03:54:34,720 --> 03:54:37,000 HIGHLIGHTY IMPORTANT IN THIS 6205 03:54:37,000 --> 03:54:39,160 RURAL COMMUNITY TO SECURE ACCESS 6206 03:54:39,160 --> 03:54:42,200 TO PARTICIPANTS, ENGAGE THE 6207 03:54:42,200 --> 03:54:45,160 COMMUNITY BY RECRUITING LOCAL 6208 03:54:45,160 --> 03:54:45,440 PROJECTS. 6209 03:54:45,440 --> 03:54:47,600 THEY ARE ALSO GREAT IN 6210 03:54:47,600 --> 03:54:48,760 ADVERTISEMENT AGENTS. 6211 03:54:48,760 --> 03:54:50,480 ACCOMMODATE THE PARTICIPANTS AS 6212 03:54:50,480 --> 03:54:52,160 MUCH AS POSSIBLE. 6213 03:54:52,160 --> 03:54:53,800 USE ASSESSMENTS THAT ARE 6214 03:54:53,800 --> 03:54:57,040 CULTURALLY SENSITIVE, WELL 6215 03:54:57,040 --> 03:54:59,320 COLLABORATED AND CHILD FRIENDLY. 6216 03:54:59,320 --> 03:54:59,440 -- 6217 03:54:59,440 --> 03:55:09,680 [ READING ] 6218 03:55:12,120 --> 03:55:13,320 AND THAT BRINGS ME TO MY LAST 6219 03:55:13,320 --> 03:55:18,560 SLIDE, PLEASE. 6220 03:55:18,560 --> 03:55:23,720 WHICH CAPTURES OUR -- WHICH 6221 03:55:23,720 --> 03:55:27,880 MEANS NOW WE WANT TO THINK A 6222 03:55:27,880 --> 03:55:28,480 THOUGHT AND WRITE THE WORD AND 6223 03:55:28,480 --> 03:55:33,040 WE WANT TO WORK FOCUSING WITH 6224 03:55:33,040 --> 03:55:34,520 INDIVIDUALS WITH DISABILITIES 6225 03:55:34,520 --> 03:55:36,040 WHILE SAMPLING THEM. 6226 03:55:36,040 --> 03:55:38,840 AND NO STATISTICS NOW BUT IN 6227 03:55:38,840 --> 03:55:43,080 OTHERS IT'S BEEN SHOWN THAT THE 6228 03:55:43,080 --> 03:55:46,960 FREQUENCY OF DOWN SYNDROME 6229 03:55:46,960 --> 03:55:49,320 INDIVIDUALS WITH INDIVIDUALS 6230 03:55:49,320 --> 03:55:50,640 WITH INTELLECTUAL DISABILITIES 6231 03:55:50,640 --> 03:55:51,560 IS BETWEEN 15 AND 17%. 6232 03:55:51,560 --> 03:55:54,440 WE THINK WE WILL HAVE A LARGE, 6233 03:55:54,440 --> 03:55:56,920 VERY IMPORTANT, INFORMATIVE 6234 03:55:56,920 --> 03:55:58,920 SAMPLE OF INDIVIDUALS WITH DOWN 6235 03:55:58,920 --> 03:56:00,360 SYNDROME IN THIS POPULATION. 6236 03:56:00,360 --> 03:56:10,880 THANK YOU FOR YOUR ATTENTION. 6237 03:56:11,320 --> 03:56:13,280 >> THANK YOU VERY MUCH, 6238 03:56:13,280 --> 03:56:14,840 DR. ELENA GRIGORENKO. 6239 03:56:14,840 --> 03:56:17,640 I'M REALLY FOCUSED ON THE LAST 6240 03:56:17,640 --> 03:56:20,280 BULLET ON YOUR SLIDE. 6241 03:56:20,280 --> 03:56:23,240 NET A WAY THAT MAKES RETURN 6242 03:56:23,240 --> 03:56:25,160 POSSIBLE -- EXIT IN A THEY MAKES 6243 03:56:25,160 --> 03:56:26,120 RETURN POSSIBLE. 6244 03:56:26,120 --> 03:56:29,120 IT IS TREATING PARTICIPANTS, OUR 6245 03:56:29,120 --> 03:56:30,360 PARTNERS, NOT JUST HUMAN 6246 03:56:30,360 --> 03:56:31,320 SUBJECTS. 6247 03:56:31,320 --> 03:56:33,440 AND JUST VERY IMPORTANT MESSAGES 6248 03:56:33,440 --> 03:56:35,880 TO REALLY BE SUCCESSFUL AND TO 6249 03:56:35,880 --> 03:56:40,440 CLOSE THAT LOOP SO THAT THE 6250 03:56:40,440 --> 03:56:43,680 INDIVIDUALS THAT YOU KNOW, 6251 03:56:43,680 --> 03:56:45,400 VOLUNTEER TO BE PART OF IT AND 6252 03:56:45,400 --> 03:56:46,720 UNDERSTAND WHY AND GET SOME 6253 03:56:46,720 --> 03:56:47,960 DIRECT BENEFITS FROM THE 6254 03:56:47,960 --> 03:56:48,880 INVESTIGATORS. 6255 03:56:48,880 --> 03:56:50,520 VERY, VERY IMPORTANT. 6256 03:56:50,520 --> 03:56:51,240 THANK YOU AGAIN. 6257 03:56:51,240 --> 03:56:56,480 OUR LAST PRESENTATION IS FROM 6258 03:56:56,480 --> 03:56:58,800 DR. NOEMI SPINAZZI WHO IS A 6259 03:56:58,800 --> 03:57:00,520 PRIMARY CARE PHYSICIAN AND 6260 03:57:00,520 --> 03:57:01,480 ASSISTANT PROFESSOR OF 6261 03:57:01,480 --> 03:57:07,400 PEDIATRICS AT THE UNIVERSITY OF 6262 03:57:07,400 --> 03:57:07,960 CALIFORNIA, SAN FRANCISCO 6263 03:57:07,960 --> 03:57:08,600 CHILDREN'S HOSPITAL IN OAKLAND. 6264 03:57:08,600 --> 03:57:10,640 SHE HAS A SPECIAL INTEREST IN 6265 03:57:10,640 --> 03:57:14,240 CHILDREN WITH COMPLEX CARE NEEDS 6266 03:57:14,240 --> 03:57:15,560 AND DEVELOPMENT DISABILITIES. 6267 03:57:15,560 --> 03:57:20,280 AND SHE FOUNDED A SPECIALIZED 6268 03:57:20,280 --> 03:57:23,400 CLINIC SERVING PATIENTS WITH 6269 03:57:23,400 --> 03:57:25,280 TRISOMY 21. 6270 03:57:25,280 --> 03:57:29,320 FUN FACT, DR. NOEMI SPINAZZI WAS 6271 03:57:29,320 --> 03:57:30,560 AWARDED THE UNIVERSITY OF 6272 03:57:30,560 --> 03:57:31,280 CALIFORNIA SAN FRANCISCO 6273 03:57:31,280 --> 03:57:34,160 CHANCELLOR'S DIVERSITY AWARD AND 6274 03:57:34,160 --> 03:57:36,080 DISABILITY SERVICE IN 2022. 6275 03:57:36,080 --> 03:57:38,760 CONGRATULATIONS FOR THAT AWARD. 6276 03:57:38,760 --> 03:57:40,920 DR. NOEMI SPINAZZI. 6277 03:57:40,920 --> 03:57:43,360 >> NOEMI SPINAZZI: THANK YOU SO 6278 03:57:43,360 --> 03:57:43,560 MUCH. 6279 03:57:43,560 --> 03:57:44,560 CAN YOU HEAR ME OKAY? 6280 03:57:44,560 --> 03:57:46,640 >> YES, WE CAN. 6281 03:57:46,640 --> 03:57:47,120 >> GREAT. 6282 03:57:47,120 --> 03:57:53,680 I WILL WORK VERY HARD TO SLOW 6283 03:57:53,680 --> 03:57:54,880 MYSELF DOWN FOR THE 6284 03:57:54,880 --> 03:57:55,640 INTERPRETERS. 6285 03:57:55,640 --> 03:57:55,920 I'M ITALIAN. 6286 03:57:55,920 --> 03:57:57,560 I SPEAK PASSIONATELY AND FAST. 6287 03:57:57,560 --> 03:57:59,840 PLEASE STEP IN AND SLOW ME DOWN 6288 03:57:59,840 --> 03:58:04,320 IF I'M GOING TOO FAST. 6289 03:58:04,320 --> 03:58:05,640 NEXT SLIDE, PLEASE. 6290 03:58:05,640 --> 03:58:09,160 WE ARE TALKING TODAY ABOUT 6291 03:58:09,160 --> 03:58:12,400 BUILDING A DIVERSE RESEARCH 6292 03:58:12,400 --> 03:58:12,960 COMMUNITY AND THROUGHOUT THE 6293 03:58:12,960 --> 03:58:15,520 PAST 2 DAYS, WE HAVE HEARD THE 6294 03:58:15,520 --> 03:58:18,680 CONCEPT OF TRUST. 6295 03:58:18,680 --> 03:58:21,920 AND I WANT TO SUGGEST THAT THERE 6296 03:58:21,920 --> 03:58:25,280 ISN'T JUST TRUST THAT WE HAVE TO 6297 03:58:25,280 --> 03:58:27,520 GAIN. 6298 03:58:27,520 --> 03:58:29,280 THERE IS MISTRUST THAT WE HAVE 6299 03:58:29,280 --> 03:58:31,760 TO ACTIVELY UNDO, JUST LIKE IT'S 6300 03:58:31,760 --> 03:58:35,000 NOT ENOUGH TO NOT BE RACIST. 6301 03:58:35,000 --> 03:58:40,680 WE HAVE TO BE ACTIVELY 6302 03:58:40,680 --> 03:58:41,160 ANTI-RACIST TO MAKE ANY 6303 03:58:41,160 --> 03:58:42,680 MEANINGFUL CHANGE IN OUR 6304 03:58:42,680 --> 03:58:45,720 STRUCTURALLY RACIST SOCIETY. 6305 03:58:45,720 --> 03:58:48,080 MISTRUST SIGNIFIES THAT THERE IS 6306 03:58:48,080 --> 03:58:49,520 SUSPICION, THAT THERE IS AN 6307 03:58:49,520 --> 03:58:52,400 ELEMENT OFIL WILL AT PLAY, 6308 03:58:52,400 --> 03:58:52,760 RIGHT? 6309 03:58:52,760 --> 03:58:55,640 WHERE MIGHT THIS COME FROM IN 6310 03:58:55,640 --> 03:58:58,680 THE CONTEXT OF RESEARCH AND 6311 03:58:58,680 --> 03:59:00,920 BUILDING A DIVERSE RESEARCH 6312 03:59:00,920 --> 03:59:01,200 COMMUNITY? 6313 03:59:01,200 --> 03:59:03,560 WELL OF COURSE IT COMES IN PART, 6314 03:59:03,560 --> 03:59:06,280 FROM HISTORICAL TRAUMA. 6315 03:59:06,280 --> 03:59:07,920 THERE ARE LEGACIES OF ABUSE AND 6316 03:59:07,920 --> 03:59:10,240 MISTREATMENT IN RESEARCH. 6317 03:59:10,240 --> 03:59:15,120 MANY OF US LEARN ABOUT THE TUS 6318 03:59:15,120 --> 03:59:20,400 KEYINGY SYPHILIS STUDY AND HOW 6319 03:59:20,400 --> 03:59:21,000 AFRICAN-AMERICAN PATIENTS WERE 6320 03:59:21,000 --> 03:59:21,600 WILLFULLY KEPT FROM RECEIVING 6321 03:59:21,600 --> 03:59:22,200 LIFE-SAVING TREATMENT FOR THE 6322 03:59:22,200 --> 03:59:23,520 PURPOSE OF A RESEARCH STUDY. 6323 03:59:23,520 --> 03:59:27,600 WE ARE TALKING ABOUT A 6324 03:59:27,600 --> 03:59:30,880 DISABILITY COMMUNITY THAT WAS 6325 03:59:30,880 --> 03:59:31,480 FORCED INTO EXPERIMENTATION 6326 03:59:31,480 --> 03:59:34,760 THROUGHOUT HISTORY THAT WAS 6327 03:59:34,760 --> 03:59:36,240 FORCEFULLY STERILIZED WITHOUT 6328 03:59:36,240 --> 03:59:36,480 CONSENT. 6329 03:59:36,480 --> 03:59:40,320 THERE IS A LOT OF HISTORICAL 6330 03:59:40,320 --> 03:59:45,000 TRAUMA THAT WE HAVE TO 6331 03:59:45,000 --> 03:59:47,640 ACKNOWLEDGE, OWN AND ACTIVELY 6332 03:59:47,640 --> 03:59:50,760 UNDO IF WE TRULY WANT TO BUILD A 6333 03:59:50,760 --> 03:59:53,280 DIVERSE RESEARCH COMMUNITY. 6334 03:59:53,280 --> 03:59:57,040 BUT THERE IS ANOTHER 6335 03:59:57,040 --> 03:59:58,840 EVIDENCE-BASED PIECE OF THIS 6336 03:59:58,840 --> 04:00:02,440 DISTRUST THAT IS THAT ONGOING 6337 04:00:02,440 --> 04:00:03,600 SOCIAL AND ECONOMIC IN 6338 04:00:03,600 --> 04:00:05,720 EQUALITIES AND STRUCTURAL RACISM 6339 04:00:05,720 --> 04:00:09,080 THAT SHAPE AND SUSTAIN THIS 6340 04:00:09,080 --> 04:00:09,320 MISTRUST. 6341 04:00:09,320 --> 04:00:12,200 AND THIS IS MAGNIFIED FOR 6342 04:00:12,200 --> 04:00:14,120 POPULATIONS TO EXPERIENCE 6343 04:00:14,120 --> 04:00:18,040 STAGGERING HEALTH DISPARITIES. 6344 04:00:18,040 --> 04:00:18,360 NEXT SLIDE. 6345 04:00:18,360 --> 04:00:21,160 LET ME TELL YOU ABOUT WHERE I 6346 04:00:21,160 --> 04:00:22,400 LIVE AND WORK. 6347 04:00:22,400 --> 04:00:25,400 I LIVE AND WORK IN OAKLAND, 6348 04:00:25,400 --> 04:00:25,680 CALIFORNIA. 6349 04:00:25,680 --> 04:00:28,280 NOT THE BAY AREA, NOT SAN 6350 04:00:28,280 --> 04:00:28,800 FRANCISCO. 6351 04:00:28,800 --> 04:00:30,640 I LIVE AND WORK IN OAKLAND AND 6352 04:00:30,640 --> 04:00:32,960 I'M VERY PROUD OF IT. 6353 04:00:32,960 --> 04:00:37,200 LET'S LOOK AT OAKLAND. 6354 04:00:37,200 --> 04:00:39,520 I DON'T HAVE A LITTLE POINTER TO 6355 04:00:39,520 --> 04:00:43,120 SHOW YOU BUT IF YOU LOOK AROUND 6356 04:00:43,120 --> 04:00:45,320 OAKLAND -- WHERE I WORK, YOU CAN 6357 04:00:45,320 --> 04:00:49,120 SEE THAT THERE ARE AREAS THAT 6358 04:00:49,120 --> 04:00:49,560 ARE SHADED IN PURPLE. 6359 04:00:49,560 --> 04:00:51,240 THOSE ARE AREAS WHERE THE 6360 04:00:51,240 --> 04:00:53,440 MAJORITY OF THE POPULATION 6361 04:00:53,440 --> 04:00:57,240 IDENTIFIES AS BLACK OR 6362 04:00:57,240 --> 04:00:57,640 AFRICAN-AMERICAN. 6363 04:00:57,640 --> 04:00:59,200 AND THEN AREAS THAT ARE SHADED 6364 04:00:59,200 --> 04:01:01,320 IN GREEN, THOSE ARE AREAS THAT 6365 04:01:01,320 --> 04:01:03,240 ARE PREDOMINANTLY POPULATED BY 6366 04:01:03,240 --> 04:01:06,640 INDIVIDUALS WHO IDENTIFY AS 6367 04:01:06,640 --> 04:01:07,040 HISPANIC OR LATINX. 6368 04:01:07,040 --> 04:01:08,840 THERE ARE SOME THAT ARE SHADED 6369 04:01:08,840 --> 04:01:12,400 IN BLUE AND THOSE ARE AREAS 6370 04:01:12,400 --> 04:01:13,280 WHERE THE MAJORITY OF THE 6371 04:01:13,280 --> 04:01:17,280 POPULATION IDENTIFIES AS ASIAN. 6372 04:01:17,280 --> 04:01:18,960 AND THEN THE LIGHT AREAS ARE 6373 04:01:18,960 --> 04:01:21,320 THOSE WHERE THE MAJORITY OF THE 6374 04:01:21,320 --> 04:01:23,040 POPULATION IDENTIFIES AS WHITE. 6375 04:01:23,040 --> 04:01:28,600 SO WE SEE HERE THAT THERE ARE 6376 04:01:28,600 --> 04:01:29,600 POCKETS WITHIN OAKLAND AND THE 6377 04:01:29,600 --> 04:01:32,640 EAST BAY WHERE I WORK WHERE 6378 04:01:32,640 --> 04:01:35,400 THERE ARE CLEARLY MORE PATIENTS 6379 04:01:35,400 --> 04:01:38,280 WHO IDENTIFY AS BLACK OR 6380 04:01:38,280 --> 04:01:38,920 AFRICAN-AMERICAN AND OTHER AREAS 6381 04:01:38,920 --> 04:01:41,040 THAT ARE PREDOMINANTLY HISPANIC 6382 04:01:41,040 --> 04:01:42,080 OR LATINX. 6383 04:01:42,080 --> 04:01:44,800 SO LET'S GO TO SOME OTHER 6384 04:01:44,800 --> 04:01:47,680 SLIDES, SOME OTHER MAPS. 6385 04:01:47,680 --> 04:01:48,560 LOOK AT THIS. 6386 04:01:48,560 --> 04:01:51,240 NOW WE'RE LOOKING AT EDUCATIONAL 6387 04:01:51,240 --> 04:01:51,520 ATTAINMENT. 6388 04:01:51,520 --> 04:01:53,320 AND LOOK AT THAT. 6389 04:01:53,320 --> 04:01:55,480 THOSE SAME AREAS THAT WERE 6390 04:01:55,480 --> 04:01:56,920 FUSCHIA AND GREEN, SO 6391 04:01:56,920 --> 04:02:00,760 PREDOMINANTLY BLACK AND LATINX, 6392 04:02:00,760 --> 04:02:02,400 CORRESPOND TO AREAS HERE WHERE 6393 04:02:02,400 --> 04:02:06,880 30 TO 100% OF PEOPLE ARE WITHOUT 6394 04:02:06,880 --> 04:02:08,400 A HIGH SCHOOL DIPLOMA OR 6395 04:02:08,400 --> 04:02:09,640 EQUIVALENT. 6396 04:02:09,640 --> 04:02:12,440 SO, THE AREAS WHERE THERE IS A 6397 04:02:12,440 --> 04:02:15,640 MAJORITY BLACK OR HISPANIC 6398 04:02:15,640 --> 04:02:17,200 LATINX POPULATION, ARE ALSO 6399 04:02:17,200 --> 04:02:20,160 AREAS WHERE PEOPLE HAVE BEEN 6400 04:02:20,160 --> 04:02:22,720 DEPRIVED FROM THE SAME ACCESS TO 6401 04:02:22,720 --> 04:02:25,240 EDUCATION THAT MOST OF US IN 6402 04:02:25,240 --> 04:02:26,720 THIS AUDIENCE HAVE. 6403 04:02:26,720 --> 04:02:28,960 AND IT CONTRASTS WITH AREAS THAT 6404 04:02:28,960 --> 04:02:31,720 ARE PREDOMINANTLY WHITE AND 6405 04:02:31,720 --> 04:02:33,680 PREDOMINANTLY ASIAN WHERE WE SEE 6406 04:02:33,680 --> 04:02:36,160 MUCH HIGHER EDUCATIONAL 6407 04:02:36,160 --> 04:02:36,480 ATTAINMENT. 6408 04:02:36,480 --> 04:02:41,280 LET'S LOOK AT ANOTHER MAP. 6409 04:02:41,280 --> 04:02:42,440 NEXT SLIDE. 6410 04:02:42,440 --> 04:02:45,760 LET'S LOOK AT POVERTY. 6411 04:02:45,760 --> 04:02:48,440 THOSE SAME AREAS THAT ARE 6412 04:02:48,440 --> 04:02:48,840 PREDOMINANTLY BLACK 6413 04:02:48,840 --> 04:02:51,080 AFRICAN-AMERICAN AND HISPANIC 6414 04:02:51,080 --> 04:02:53,480 LATINX, AND SOME AREAS THAT ARE 6415 04:02:53,480 --> 04:02:57,640 PREDOMINANTLY ASIAN, ARE ALSO 6416 04:02:57,640 --> 04:02:59,760 AREAS WHERE 30-50% OF THE 6417 04:02:59,760 --> 04:03:03,640 POPULATION LIVES SIGNIFICANTLY 6418 04:03:03,640 --> 04:03:06,320 BELOW THE FEDERAL POVERTY LEVEL. 6419 04:03:06,320 --> 04:03:10,840 SO, WE SEE HERE THAT SPECIFIC 6420 04:03:10,840 --> 04:03:13,000 RACE GROUPS TEND TO LIVE IN 6421 04:03:13,000 --> 04:03:17,280 AREAS THAT ARE SUPERIMPOSED ON 6422 04:03:17,280 --> 04:03:20,080 AREAS OF POVERTY, SIGNIFICANT 6423 04:03:20,080 --> 04:03:21,280 POVERTY. 6424 04:03:21,280 --> 04:03:28,560 NEXT SLIDE, PLEASE. 6425 04:03:28,560 --> 04:03:30,200 PER SENT WITH ANY DISABILITY 6426 04:03:30,200 --> 04:03:34,840 MAPS DIRECTLY OVER AREAS THAT 6427 04:03:34,840 --> 04:03:36,120 ARE BORDER. 6428 04:03:36,120 --> 04:03:36,760 THE MAJORITY OF OUR DISABLED 6429 04:03:36,760 --> 04:03:38,840 INDIVIDUALS ARE LIVING IN 6430 04:03:38,840 --> 04:03:41,560 POVERTY AND LIVING WITHIN 6431 04:03:41,560 --> 04:03:44,120 CONTEXT OF INTERGENERATIONAL 6432 04:03:44,120 --> 04:03:44,360 POVERTY. 6433 04:03:44,360 --> 04:03:49,160 NEXT SLIDE, PLEASE. 6434 04:03:49,160 --> 04:03:51,360 AND THEN LET'S TAKE A BREATH AND 6435 04:03:51,360 --> 04:03:52,800 LOOK AT THIS. 6436 04:03:52,800 --> 04:03:57,240 LET'S LOOK AT OAKLAND 6437 04:03:57,240 --> 04:03:57,560 SPECIFICALLY. 6438 04:03:57,560 --> 04:03:59,680 THERE IS -- IT'S BEEN DOCUMENTED 6439 04:03:59,680 --> 04:04:04,840 THAT THERE IS UP TO A 20-YEAR 6440 04:04:04,840 --> 04:04:09,120 LIFE EXPECTANCY GAP WITHIN MY 6441 04:04:09,120 --> 04:04:10,080 CITY, WITHIN OAKLAND, BETWEEN 6442 04:04:10,080 --> 04:04:13,880 ZIP CODES THAT ARE PREDOMINANTLY 6443 04:04:13,880 --> 04:04:15,400 BLACK, AFRICAN-AMERICAN, LATINX 6444 04:04:15,400 --> 04:04:18,520 AND THOSE THAT ARE PREDOMINANTLY 6445 04:04:18,520 --> 04:04:19,720 WHITE AND THE HILLS. 6446 04:04:19,720 --> 04:04:20,000 OKAY? 6447 04:04:20,000 --> 04:04:22,240 SO THIS IS WHAT WE'RE LOOKING AT 6448 04:04:22,240 --> 04:04:24,840 WHEN WE'RE TALKING ABOUT 6449 04:04:24,840 --> 04:04:27,440 BUILDING A DIVERSE RESEARCH 6450 04:04:27,440 --> 04:04:29,760 COMMUNITY, FIGHTING AGAINST 6451 04:04:29,760 --> 04:04:30,720 MISTRUST, BUILDING TRUST. 6452 04:04:30,720 --> 04:04:35,960 WE ARE TALKING ABOUT ENGAGING A 6453 04:04:35,960 --> 04:04:39,280 POPULATION THAT IS OFTEN COPING 6454 04:04:39,280 --> 04:04:42,920 WITH POVERTY, LACK OF EDUCATION, 6455 04:04:42,920 --> 04:04:46,320 NEXT SLIDE, PLEASE. 6456 04:04:46,320 --> 04:04:49,160 SO TO QUOTE A FAMOUS 6457 04:04:49,160 --> 04:04:50,800 PHILOSOPHER, JAY-Z, THEY HAVE 99 6458 04:04:50,800 --> 04:04:53,000 PROBLEMS AND RESEARCH ISN'T ONE 6459 04:04:53,000 --> 04:04:54,800 FOR THEM RIGHT NOW, RIGHT? 6460 04:04:54,800 --> 04:04:56,800 THEY MAY NOT HAVE HOUSING. 6461 04:04:56,800 --> 04:04:59,040 THEY HAVE CHILD CARE ISSUES. 6462 04:04:59,040 --> 04:05:01,040 ESPECIALLY IF THEIR CHILD HAS A 6463 04:05:01,040 --> 04:05:03,080 DISABILITY LIKE DOWN SYNDROME 6464 04:05:03,080 --> 04:05:07,840 WHERE IT BECOMES EVEN HARDER TO 6465 04:05:07,840 --> 04:05:09,320 FIND ADEQUATE CHILD CARE. 6466 04:05:09,320 --> 04:05:11,320 LACK OF ACCESS TO FAIR 6467 04:05:11,320 --> 04:05:15,160 EMPLOYMENT THAT PAYS A LIVEABLE 6468 04:05:15,160 --> 04:05:15,800 WAAGE MY PATIENTS CAN'T SLEEP AT 6469 04:05:15,800 --> 04:05:18,480 NIGHT BECAUSE THEY HEAR GUNSHOTS 6470 04:05:18,480 --> 04:05:18,840 ALL NIGHT. 6471 04:05:18,840 --> 04:05:21,560 THERE IS EXTREME COMMUNITY 6472 04:05:21,560 --> 04:05:21,800 VIOLENCE. 6473 04:05:21,800 --> 04:05:24,280 HOW DO WE TALK ABOUT HEALTH AND 6474 04:05:24,280 --> 04:05:29,920 HEALTH BEHAVIORS WHEN WE LICH IN 6475 04:05:29,920 --> 04:05:30,840 FOOD DESERTS? 6476 04:05:30,840 --> 04:05:31,400 -- LIVE -- WHERE THE CLOSEST 6477 04:05:31,400 --> 04:05:32,480 GROCERY STORE IS MILES AWAY AND 6478 04:05:32,480 --> 04:05:33,640 ONE DOES NOT HAVE A CAR BECAUSE 6479 04:05:33,640 --> 04:05:35,960 THEY CANNOT AFFORD A CAR. 6480 04:05:35,960 --> 04:05:37,280 AND PUBLIC TRANSPORTATION ISN'T 6481 04:05:37,280 --> 04:05:39,480 EASILY ACCESSIBLE AND SO WHAT WE 6482 04:05:39,480 --> 04:05:42,520 HAVE IS THE LOCAL LICKER STORE 6483 04:05:42,520 --> 04:05:45,320 THAT WILL SELL YOU CHEETOS AND 6484 04:05:45,320 --> 04:05:49,000 SODA FOR ANY SORT OF AFFORDABLE 6485 04:05:49,000 --> 04:05:49,880 PRICE BECAUSE GOD FORBID YOU 6486 04:05:49,880 --> 04:05:51,680 CAN'T AFFORD THAT 3 DOLLAR 6487 04:05:51,680 --> 04:05:51,960 APPLE. 6488 04:05:51,960 --> 04:05:56,280 THERE IS INADEQUATE SCHOOL 6489 04:05:56,280 --> 04:05:58,040 PROGRAMS AND SUPPORTS. 6490 04:05:58,040 --> 04:06:00,040 I WISH THAT I HAD NEVER HEARD 6491 04:06:00,040 --> 04:06:02,320 THE LINE I HEAR SO OFTEN WHEN I 6492 04:06:02,320 --> 04:06:05,400 GO TO IEP MEETINGS AND I HEAR, 6493 04:06:05,400 --> 04:06:08,040 WELL, THE KID ISN'T SPEAKING YET 6494 04:06:08,040 --> 04:06:09,280 SO THEY SHOULDN'T GET SPEECH 6495 04:06:09,280 --> 04:06:12,000 THERAPY BECAUSE THEY ARE NOT 6496 04:06:12,000 --> 04:06:12,800 SPEAKING YET. 6497 04:06:12,800 --> 04:06:12,960 WOW. 6498 04:06:12,960 --> 04:06:14,960 BUT THIS IS WHAT OUR PATIENTS 6499 04:06:14,960 --> 04:06:17,600 ARE DEALING WITH. 6500 04:06:17,600 --> 04:06:18,760 AND LACK OF RESPITE. 6501 04:06:18,760 --> 04:06:21,120 OUR PARENTS ARE TIRED. 6502 04:06:21,120 --> 04:06:23,160 OUR PARENTS ARE OVERWORKED AND 6503 04:06:23,160 --> 04:06:24,800 THERE ISN'T ANYBODY AVAILABLE TO 6504 04:06:24,800 --> 04:06:29,320 STEP IN AND PROVIDE MEANINGFUL 6505 04:06:29,320 --> 04:06:29,560 RESPITE. 6506 04:06:29,560 --> 04:06:32,600 NEXT. 6507 04:06:32,600 --> 04:06:35,400 SO LET ME TELL YOU ABOUT WHERE I 6508 04:06:35,400 --> 04:06:35,840 WORK SPECIFICALLY. 6509 04:06:35,840 --> 04:06:39,000 I WORK AT UCSF CHILDREN'S 6510 04:06:39,000 --> 04:06:41,040 HOSPITAL OAKLAND FEDERALLY 6511 04:06:41,040 --> 04:06:42,360 QUALIFIED HEALTH CENTER. 6512 04:06:42,360 --> 04:06:44,360 WE ARE THE ONLY PEDIATRIC ONLY 6513 04:06:44,360 --> 04:06:45,440 FEDERALLY QUALIFIED HEALTH 6514 04:06:45,440 --> 04:06:48,200 CENTER THAT WE KNOW OF IN THE 6515 04:06:48,200 --> 04:06:49,880 NATION. 6516 04:06:49,880 --> 04:06:51,720 WE SERVE ALMOST 10,000 UNIQUE 6517 04:06:51,720 --> 04:06:54,480 PATIENTS, 35% OF THEM IDENTIFY 6518 04:06:54,480 --> 04:06:56,280 AS BLACK AFRICAN-AMERICAN, ABOUT 6519 04:06:56,280 --> 04:07:00,360 30% IDENTIFY AS HISPANIC OR 6520 04:07:00,360 --> 04:07:03,600 LATINX AND THEN 24% OF THEM 6521 04:07:03,600 --> 04:07:06,160 IDENTIFY AS OTHER OR MIXED. 6522 04:07:06,160 --> 04:07:09,280 MOST OF THEM, ABOUT 80% OF THEM 6523 04:07:09,280 --> 04:07:11,920 ARE COVERED BY MEDICAID, BY 6524 04:07:11,920 --> 04:07:18,480 GOVERNMENT INSURANCE. 6525 04:07:18,480 --> 04:07:18,680 NEXT. 6526 04:07:18,680 --> 04:07:22,080 SO HOW DO WE CONDUCT RESEARCH 6527 04:07:22,080 --> 04:07:24,080 WITHIN THE MEDICAL HOME? 6528 04:07:24,080 --> 04:07:26,000 WELL, FOR ONE, RECRUITMENT 6529 04:07:26,000 --> 04:07:29,760 OCCURS WITHIN A TRUSTED SETTING. 6530 04:07:29,760 --> 04:07:32,400 WE ARE ALL TRAINED ON 6531 04:07:32,400 --> 04:07:33,600 TRAUMA-INFORMED CARE AND 6532 04:07:33,600 --> 04:07:34,160 APPROACHES. 6533 04:07:34,160 --> 04:07:35,760 IT'S NOT WHAT IS WRONG WITH YOU. 6534 04:07:35,760 --> 04:07:38,320 IT'S WHAT HAPPENED TO YOU? 6535 04:07:38,320 --> 04:07:40,600 THAT MAY BE MAKING YOU REACT A 6536 04:07:40,600 --> 04:07:43,160 CERTAIN WAY ABOUT WHAT I AM 6537 04:07:43,160 --> 04:07:44,120 SUGGESTING THAT MAKES YOU 6538 04:07:44,120 --> 04:07:45,120 EXPERIENCE THE VISIT THE WAY 6539 04:07:45,120 --> 04:07:50,280 THAT YOU'RE EXPERIENCING IT. 6540 04:07:50,280 --> 04:07:54,280 WE RECRUIT HEAVILY FOR RACE AND 6541 04:07:54,280 --> 04:07:55,680 LANGUAGE CONCORDANCE PROVIDERS 6542 04:07:55,680 --> 04:07:57,720 AND RESEARCH COORDINATORS. 6543 04:07:57,720 --> 04:08:00,520 SO THAT FROM THE VERY BEGINNING, 6544 04:08:00,520 --> 04:08:02,560 IT'S NOT A BUNCH OF WHITE PEOPLE 6545 04:08:02,560 --> 04:08:05,400 ASKING YOU TO DONATE YOUR TIME 6546 04:08:05,400 --> 04:08:09,720 AND EXPERTISE AND PERHAPS 6547 04:08:09,720 --> 04:08:11,240 SAMPLES FOR RESEARCH. 6548 04:08:11,240 --> 04:08:13,280 ALL RECRUITMENT MATERIALS, 6549 04:08:13,280 --> 04:08:16,160 CONSENT FORMS, ARE REVIEWED BY A 6550 04:08:16,160 --> 04:08:18,440 DIVERSE TEAM THAT CAN SPOT THE 6551 04:08:18,440 --> 04:08:18,760 BLINDSPOTS. 6552 04:08:18,760 --> 04:08:21,280 THEY CAN SPOT THE LANGUAGE THAT 6553 04:08:21,280 --> 04:08:24,080 MIGHT ACTIVATE TRAUMA. 6554 04:08:24,080 --> 04:08:25,280 THEY CAN MAKE SURE THAT THE 6555 04:08:25,280 --> 04:08:28,320 WORDING AND THE GRAPHICS THAT 6556 04:08:28,320 --> 04:08:28,960 ARE USED THAT ARE REPRESENTATIVE 6557 04:08:28,960 --> 04:08:29,880 OF THE DIVERSE COMMUNITY THAT WE 6558 04:08:29,880 --> 04:08:33,760 SERVE AND WE HOPE TO RECRUIT. 6559 04:08:33,760 --> 04:08:35,120 ALL MATERIALS ARE ALWAYS 6560 04:08:35,120 --> 04:08:41,280 TRANSLATED IN SPANISH BY TRAINED 6561 04:08:41,280 --> 04:08:41,920 INTERPRETERS AND WE HAVE ON CALL 6562 04:08:41,920 --> 04:08:44,080 VIDEO INTERPRETERS AVAILABLE FOR 6563 04:08:44,080 --> 04:08:47,760 CONSENT IN ADDITIONAL LANGUAGES. 6564 04:08:47,760 --> 04:08:49,800 AND, WE ALWAYS SHARE BACK OUR 6565 04:08:49,800 --> 04:08:52,320 RESULTS WITHIN THE COMMUNITY. 6566 04:08:52,320 --> 04:08:54,480 WE HAVE STRONG PARTNERSHIPS WITH 6567 04:08:54,480 --> 04:08:57,680 COMMUNITY ORGANIZATIONS TO HAVE 6568 04:08:57,680 --> 04:08:58,280 THE OPPORTUNITY TO SHARE BACK 6569 04:08:58,280 --> 04:09:00,240 RESULTS AS WELL AS TO GIVE BACK 6570 04:09:00,240 --> 04:09:03,360 IN THE FORM OF LECTURES AND 6571 04:09:03,360 --> 04:09:09,840 OTHER COMMUNITY EDUCATION. 6572 04:09:09,840 --> 04:09:10,360 NEXT. 6573 04:09:10,360 --> 04:09:13,360 WE MEET FAMILIES WHERE THEY ARE. 6574 04:09:13,360 --> 04:09:15,280 RECRUITMENT TAKES PLACE DURING 6575 04:09:15,280 --> 04:09:17,280 CLINICAL VISITS WHENEVER 6576 04:09:17,280 --> 04:09:18,000 POSSIBLE. 6577 04:09:18,000 --> 04:09:19,760 WE REALIZE THAT WE ARE ASKING 6578 04:09:19,760 --> 04:09:21,800 FAMILIES WHO ARE ALREADY 6579 04:09:21,800 --> 04:09:24,840 OVERBURDENED TO SUPPORT OUR 6580 04:09:24,840 --> 04:09:25,280 RESEARCH EFFORTS. 6581 04:09:25,280 --> 04:09:28,480 SO WE REALLY STRIVE TO RECRUIT 6582 04:09:28,480 --> 04:09:30,480 DURING THE CLINIC VISIT AND WE 6583 04:09:30,480 --> 04:09:31,800 HAVE EXPERT RESEARCH 6584 04:09:31,800 --> 04:09:33,720 COORDINATORS WHO KNOW TO WORK 6585 04:09:33,720 --> 04:09:37,320 AROUND THE PROVIDERS TO REALLY 6586 04:09:37,320 --> 04:09:41,120 VALUE EVERY MINUTE OF THE 6587 04:09:41,120 --> 04:09:41,520 FAMILY'S TIME. 6588 04:09:41,520 --> 04:09:42,800 OUR COORDINATORS COMMUNICATE 6589 04:09:42,800 --> 04:09:44,600 WITH THE FAMILIES IN THEIR 6590 04:09:44,600 --> 04:09:45,000 PREFERRED METHOD. 6591 04:09:45,000 --> 04:09:46,560 SO MANY FAMILIES ARE HARD TO 6592 04:09:46,560 --> 04:09:50,080 REACH BY PHONE CALL BUT MUCH 6593 04:09:50,080 --> 04:09:52,000 MORE REACHABLE BY TEXT. 6594 04:09:52,000 --> 04:09:55,240 THERE MAY BE TIMES OF A DAY A 6595 04:09:55,240 --> 04:09:56,680 FAMILY IS MORE AVAILABLE SO WE 6596 04:09:56,680 --> 04:09:59,080 TRY THOSE TIMES. 6597 04:09:59,080 --> 04:10:00,560 AND WE HAVE FLEXIBLE SCHEDULING 6598 04:10:00,560 --> 04:10:02,240 FOR RESEARCH VISITS THAT 6599 04:10:02,240 --> 04:10:04,480 MINIMIZES ABSENCE FROM SCHOOL, 6600 04:10:04,480 --> 04:10:06,160 THAT ALLOWS FOR THE FAMILY TO 6601 04:10:06,160 --> 04:10:07,880 COME WITH THAT RIDE THAT THEY 6602 04:10:07,880 --> 04:10:10,920 MIGHT ASK FOR, ET CETERA, AND WE 6603 04:10:10,920 --> 04:10:14,120 REQUEST OR OFFER SUPPORT WITH 6604 04:10:14,120 --> 04:10:14,520 TRANSPORTATION. 6605 04:10:14,520 --> 04:10:15,680 PAIRING THE RESEARCH VISIT WITH 6606 04:10:15,680 --> 04:10:18,760 A CLINICAL VISIT ALLOWS US TO 6607 04:10:18,760 --> 04:10:19,440 LEVERAGE THE TRANSPORTATION 6608 04:10:19,440 --> 04:10:20,880 BENEFITS THAT ARE AVAILABLE 6609 04:10:20,880 --> 04:10:22,960 THROUGH INSURANCE TO ENSURE THAT 6610 04:10:22,960 --> 04:10:24,280 THE FAMILY CAN ACTUALLY MAKE IT 6611 04:10:24,280 --> 04:10:25,280 TO THEIR APPOINTMENT. 6612 04:10:25,280 --> 04:10:27,720 AND WE HELP WITH OTHER KIDS WHO 6613 04:10:27,720 --> 04:10:29,280 MAY BE PRESENT DURING THE 6614 04:10:29,280 --> 04:10:30,280 RESEARCH VISIT. 6615 04:10:30,280 --> 04:10:32,160 WE INCLUDE IN OUR BUDGET THE 6616 04:10:32,160 --> 04:10:33,720 DISTRACTION MATERIALS THAT CAN 6617 04:10:33,720 --> 04:10:36,920 ENGAGE THE SIBLINGS WHO MAY BE 6618 04:10:36,920 --> 04:10:40,160 THERE SO THAT IT DOESN'T ADD AN 6619 04:10:40,160 --> 04:10:43,080 ADDITIONAL DAUNTING TASK OF 6620 04:10:43,080 --> 04:10:43,720 MANAGING THE SIBLINGS AND THE 6621 04:10:43,720 --> 04:10:46,920 KID WHILE ALSO PARTICIPATING IN 6622 04:10:46,920 --> 04:10:49,080 WHATEVER RESEARCH. 6623 04:10:49,080 --> 04:10:54,760 NEXT SLIDE. 6624 04:10:54,760 --> 04:10:57,000 IT'S A TWO-WAY STREET. 6625 04:10:57,000 --> 04:11:00,600 ONE OF MY MENTORS, DR. DANA LONG 6626 04:11:00,600 --> 04:11:02,320 FEATURED IN THE PREVIOUS SLIDE, 6627 04:11:02,320 --> 04:11:05,200 HELPED CREATE WHAT IS CALLED THE 6628 04:11:05,200 --> 04:11:07,240 FAMILY INFORMATION AND 6629 04:11:07,240 --> 04:11:09,440 NAVIGATION DESK WHICH IS STAFFED 6630 04:11:09,440 --> 04:11:11,480 BY COMMUNITY I NAVIGATORS AND 6631 04:11:11,480 --> 04:11:14,040 CAN HELP CONNECT FAMILIES WITH 6632 04:11:14,040 --> 04:11:15,280 RESOURCES WITHIN THE COMMUNITIES 6633 04:11:15,280 --> 04:11:18,960 THAT ADDRESS THEIR NEEDS. 6634 04:11:18,960 --> 04:11:21,080 AND WE PAIR RESEARCH VISITS WITH 6635 04:11:21,080 --> 04:11:22,960 DISCUSSION WITH THE FINE 6636 04:11:22,960 --> 04:11:25,120 NAVIGATOR TO MAKE SURE THAT 6637 04:11:25,120 --> 04:11:27,960 EVERY VISIT IS TRULY SYMBIOTIC 6638 04:11:27,960 --> 04:11:28,360 AND BIDIRECTIONAL. 6639 04:11:28,360 --> 04:11:30,600 WE HAVE A FOOD PHARMACY WHERE WE 6640 04:11:30,600 --> 04:11:33,480 GIVE OUT FRESH FRUITS AND 6641 04:11:33,480 --> 04:11:35,600 VEGETABLES GROWN ON A ROOFTOP 6642 04:11:35,600 --> 04:11:37,280 GARDEN NEAR OUR CLINIC TO MAKE 6643 04:11:37,280 --> 04:11:39,440 SURE OUR FAMILIES HAVE ACCESS TO 6644 04:11:39,440 --> 04:11:41,240 FRESH FRUITS AND VEGETABLES. 6645 04:11:41,240 --> 04:11:43,360 WE HAVE ON SITE SOCIAL WORKERS 6646 04:11:43,360 --> 04:11:44,040 THAT CAN BE AVAILABLE TO MEET 6647 04:11:44,040 --> 04:11:46,880 WITH FAMILIES IF SOCIAL NEEDS 6648 04:11:46,880 --> 04:11:47,680 ARISE. 6649 04:11:47,680 --> 04:11:49,280 AND AGAIN, BECAUSE THE RESEARCH 6650 04:11:49,280 --> 04:11:51,840 IS EMBEDDED WITHIN THE CLINIC, 6651 04:11:51,840 --> 04:11:53,160 THE PATIENT'S MEDICAL NEEDS CAN 6652 04:11:53,160 --> 04:11:54,880 BE MET THE SAME DAY. 6653 04:11:54,880 --> 04:11:57,760 WE SHOW UP FOR OUR PATIENTS. 6654 04:11:57,760 --> 04:11:59,760 WE ADVOCATE TO ADDRESS THOSE 6655 04:11:59,760 --> 04:12:02,160 SOCIAL DRIVERS OF HEALTH THAT 6656 04:12:02,160 --> 04:12:06,200 ARE FEEDING MISTRUST THROUGH 6657 04:12:06,200 --> 04:12:06,760 MEDICAL/LEGAL PARTNERSHIPS, 6658 04:12:06,760 --> 04:12:09,280 SUPPORT AT IEP MEETINGS, SUPPORT 6659 04:12:09,280 --> 04:12:11,440 WITH OBTAINING DISABILITY 6660 04:12:11,440 --> 04:12:13,520 BENEFITS. 6661 04:12:13,520 --> 04:12:19,800 NEXT SLIDE. 6662 04:12:19,800 --> 04:12:21,880 AND LET'S ADDRESS THE ELEPHANT 6663 04:12:21,880 --> 04:12:25,320 IN THE ROOM. 6664 04:12:25,320 --> 04:12:27,760 STATE-OF-THE-ART, HIGH QUALITY, 6665 04:12:27,760 --> 04:12:30,560 DOWN SYNDROME CARE REQUIRES 6666 04:12:30,560 --> 04:12:32,320 ADDITIONAL TIME AND RESOURCES, 6667 04:12:32,320 --> 04:12:34,320 ADDITIONAL CARE COORDINATION, 6668 04:12:34,320 --> 04:12:34,960 ADVOCACY. 6669 04:12:34,960 --> 04:12:39,800 AND ALL OF THIS FALLS BACK ON 6670 04:12:39,800 --> 04:12:40,120 THE PROVIDER. 6671 04:12:40,120 --> 04:12:43,360 SO THE BARRIERS TO RESEARCH IN 6672 04:12:43,360 --> 04:12:46,080 MY CONTEXT IS THE LACK OF 6673 04:12:46,080 --> 04:12:46,640 SUPPORT FOR THE CLINICAL 6674 04:12:46,640 --> 04:12:49,240 PROGRAMS BECAUSE I HAVE TO SPEND 6675 04:12:49,240 --> 04:12:51,800 HOURS EVERY WEEK THINKING ABOUT 6676 04:12:51,800 --> 04:12:54,640 HOW TO SECURE PHILANTHROPIC 6677 04:12:54,640 --> 04:12:56,960 SUPPORT JUST KEEP GOING. 6678 04:12:56,960 --> 04:13:01,320 FOR RESEARCH EFFORTS TO INCLUDE 6679 04:13:01,320 --> 04:13:02,920 LINGUISTICALLY, ETHICAL AND 6680 04:13:02,920 --> 04:13:03,360 ECONOMICALLY DIVERSE 6681 04:13:03,360 --> 04:13:04,040 COMMUNITIES, RECRUITED FROM 6682 04:13:04,040 --> 04:13:06,320 PROGRAMS THAT ARE EMBEDDED IN 6683 04:13:06,320 --> 04:13:08,800 THESE COMMUNITIES, MORE SUPPORT 6684 04:13:08,800 --> 04:13:10,800 IS NEEDED FOR THE CLINICAL 6685 04:13:10,800 --> 04:13:11,280 PROGRAMS. 6686 04:13:11,280 --> 04:13:13,720 THIS IS WHERE WE HAVE TO BREAK 6687 04:13:13,720 --> 04:13:15,360 THE SILO BETWEEN WHAT IS 6688 04:13:15,360 --> 04:13:17,360 RESEARCH FUNDING AND WHAT IS 6689 04:13:17,360 --> 04:13:20,120 FUNDING FOR THE CLINICAL PROGRAM 6690 04:13:20,120 --> 04:13:21,240 THAT IS ARE PIPELINED FOR THAT 6691 04:13:21,240 --> 04:13:21,480 RESEARCH. 6692 04:13:21,480 --> 04:13:25,120 SO THAT WE ARE NOT USING HUMAN 6693 04:13:25,120 --> 04:13:25,880 SUBJECTS FOR RESEARCH. 6694 04:13:25,880 --> 04:13:28,480 WE ARE PARTNERING SO THAT WHILE 6695 04:13:28,480 --> 04:13:30,480 WE PROVIDE THE CLINICAL CARE, WE 6696 04:13:30,480 --> 04:13:32,720 ARE ALSO ADVANCING KNOWLEDGE TO 6697 04:13:32,720 --> 04:13:34,520 ENHANCE THAT SAME CARE THAT WE 6698 04:13:34,520 --> 04:13:37,120 ARE PROVIDING. 6699 04:13:37,120 --> 04:13:41,280 NEXT SLIDE. 6700 04:13:41,280 --> 04:13:45,280 AND SINCE IT'S BEEN A LONG DAY, 6701 04:13:45,280 --> 04:13:49,160 I THOUGHT I WOULD END WITH A 6702 04:13:49,160 --> 04:13:51,840 VIDEO WHERE SOME OF MY PATIENTS 6703 04:13:51,840 --> 04:13:55,480 SHARE SOME OF THEIR EXPERIENCES 6704 04:13:55,480 --> 04:13:57,360 INTERACTING WITH HER TO GIVE YOU 6705 04:13:57,360 --> 04:14:00,720 A GLIMPSE INTO WHAT DEEP TRUST 6706 04:14:00,720 --> 04:14:05,600 LOOKS LIKE WITHIN A CLINICAL 6707 04:14:05,600 --> 04:14:07,160 CONTEXT. 6708 04:14:07,160 --> 04:14:17,480 [ MUSIC PLAYING ] 6709 04:14:27,520 --> 04:14:31,840 >> HI GUYS, THIS IS ME WHAT IS 6710 04:14:31,840 --> 04:14:32,840 YOUR NAME? 6711 04:14:32,840 --> 04:14:33,760 >> DR. NAOMI HAPPENS TO 6712 04:14:33,760 --> 04:14:37,400 UNDERSTAND MORE ABOUT DOWN 6713 04:14:37,400 --> 04:14:38,920 SYNDROME AND TO HELP UNDERSTAND 6714 04:14:38,920 --> 04:14:40,520 MORE ABOUT HEALTH. 6715 04:14:40,520 --> 04:14:43,320 IT'S VERY IMPORTANT TO US TO 6716 04:14:43,320 --> 04:14:44,760 HAVE DR. NOEMI SPINAZZI AND HER 6717 04:14:44,760 --> 04:14:51,680 TEAM WORKING WITH US SO WE CAN 6718 04:14:51,680 --> 04:14:54,400 LEARN MORE AND THEN JOIN 6719 04:14:54,400 --> 04:14:59,040 CECILIA'S LIFE. 6720 04:14:59,040 --> 04:15:00,000 >> I TREASURED MY SON TO 6721 04:15:00,000 --> 04:15:01,080 CHARLIE'S CLINIC AND AS SOON AS 6722 04:15:01,080 --> 04:15:03,640 I DISCOVERED IT, I'M SO GLAD 6723 04:15:03,640 --> 04:15:05,280 THAT I DID BECAUSE IT'S BEEN 6724 04:15:05,280 --> 04:15:08,280 LIFE CHANGING FOR MY SON. 6725 04:15:08,280 --> 04:15:09,400 UNDER NOEMI SPINAZZI'S CARE HE'S 6726 04:15:09,400 --> 04:15:12,200 BEEN NEARLY CURED OF SLEEP APNEA 6727 04:15:12,200 --> 04:15:14,880 WHICH WAS A HUGE CONCERN FOR US 6728 04:15:14,880 --> 04:15:15,120 BEFORE. 6729 04:15:15,120 --> 04:15:18,080 THANK YOU DR. NOEMI SPINAZZI! 6730 04:15:18,080 --> 04:15:18,440 >> THANK YOU. 6731 04:15:18,440 --> 04:15:20,720 >> WE HAVE BEEN GOING TO SEE 6732 04:15:20,720 --> 04:15:22,360 DR. NOEMI SPINAZZI FOR THE PAST 6733 04:15:22,360 --> 04:15:25,920 FIVE YEARS AND HAD A TREMENDOUS 6734 04:15:25,920 --> 04:15:28,520 IMPACT ON OUR ENTIRE FAMILY. 6735 04:15:28,520 --> 04:15:29,160 >> DR. NOEMI SPINAZZI AND HER 6736 04:15:29,160 --> 04:15:30,680 TEAM HAVE BEEN AMAZING AND 6737 04:15:30,680 --> 04:15:31,920 HONESTLY BEEN THE KEY TO HELPING 6738 04:15:31,920 --> 04:15:33,840 ME LAY THE BEST POSSIBLE 6739 04:15:33,840 --> 04:15:34,400 FOUNDATION FOR MY DAUGHTER. 6740 04:15:34,400 --> 04:15:36,600 NOT ONLY DO THEY ASSIST WITH HER 6741 04:15:36,600 --> 04:15:39,880 MEDICAL NEEDS BUT THEY HAVE ALSO 6742 04:15:39,880 --> 04:15:41,280 HELPED ALONG THE WAY WITH HER 6743 04:15:41,280 --> 04:15:43,000 EDUCATIONAL CAREER AND I 6744 04:15:43,000 --> 04:15:47,720 COULDN'T BE MORE GRATEFUL. 6745 04:15:47,720 --> 04:15:53,280 [ SINGING ] 6746 04:15:53,280 --> 04:15:55,800 >> DR. NOEMI SPINAZZI AND HER 6747 04:15:55,800 --> 04:15:57,280 TEAM'S CARE EXTRAORDINARY. 6748 04:15:57,280 --> 04:15:59,960 AND IT GOES BEYOND JUST LOOKING 6749 04:15:59,960 --> 04:16:01,080 AT THE MEDICAL PIECE. 6750 04:16:01,080 --> 04:16:02,640 IT'S TRULY HOLISTIC. 6751 04:16:02,640 --> 04:16:03,600 >> WHAT WE APPRECIATE THE MOST 6752 04:16:03,600 --> 04:16:06,520 ABOUT IT IS DR. NOEMI SPINAZZI'S 6753 04:16:06,520 --> 04:16:09,280 DEDICATION, CARE AND LOVE AND 6754 04:16:09,280 --> 04:16:11,880 SUPPORT, FUNDRAISERS, NEEDS AND 6755 04:16:11,880 --> 04:16:12,080 HELP. 6756 04:16:12,080 --> 04:16:14,000 SHE HAS ALWAYS BEEN SUCH 6757 04:16:14,000 --> 04:16:16,120 MOTIVATION FOR HER. 6758 04:16:16,120 --> 04:16:18,280 SHE ALWAYS GOES ABOVE AND 6759 04:16:18,280 --> 04:16:18,520 BEYOND. 6760 04:16:18,520 --> 04:16:19,720 FOR THAT AND MANY MORE REASONS, 6761 04:16:19,720 --> 04:16:21,760 LET ME THANK YOU CHARLIE'S 6762 04:16:21,760 --> 04:16:23,640 CLINIC AND THE WHOLE STAFF. 6763 04:16:23,640 --> 04:16:33,240 >> THANK YOU DR. NOEMI SPINAZZI. 6764 04:16:33,240 --> 04:16:36,120 >> SHE CHECKS MINE. 6765 04:16:36,120 --> 04:16:36,400 >> YES. 6766 04:16:36,400 --> 04:16:47,800 >> ALL RIGHT SO WE ARE GOING TO 6767 04:16:49,320 --> 04:16:50,280 SAY GOOD BY. 6768 04:16:50,280 --> 04:16:53,320 GOODBYE EVERYBODY. 6769 04:16:53,320 --> 04:16:53,640 >> BYE-BYE. 6770 04:16:53,640 --> 04:17:03,960 [ MUSIC PLAYING ] 6771 04:17:33,120 --> 04:17:33,720 >> YOU ARE RIGHT. 6772 04:17:33,720 --> 04:17:36,680 WHAT A GREAT WAY TO END YOUR 6773 04:17:36,680 --> 04:17:38,000 PRESENTATION. 6774 04:17:38,000 --> 04:17:40,080 ABSOLUTELY BEAUTIFUL. 6775 04:17:40,080 --> 04:17:42,560 AND REALLY COMMEND YOU FOR ALL 6776 04:17:42,560 --> 04:17:44,040 THE GREAT WORK YOU'RE DOING 6777 04:17:44,040 --> 04:17:48,720 THERE IN OAKLAND. 6778 04:17:48,720 --> 04:17:53,640 OBVIOUSLY THEY LOVE YOU VERY 6779 04:17:53,640 --> 04:17:53,880 MUCH. 6780 04:17:53,880 --> 04:17:56,200 SO WE HAVE ABOUT 20 MINUTES FOR 6781 04:17:56,200 --> 04:17:58,440 ANY QUESTIONS. 6782 04:17:58,440 --> 04:18:00,120 PLEASE, INDIVIDUALS FEEL FREE TO 6783 04:18:00,120 --> 04:18:02,600 ASK YOUR QUESTIONS OR PUT YOUR 6784 04:18:02,600 --> 04:18:09,840 QUESTIONS IN THE CHAT. 6785 04:18:09,840 --> 04:18:10,480 ANNA HAS A QUESTION. 6786 04:18:10,480 --> 04:18:10,760 GO AHEAD. 6787 04:18:10,760 --> 04:18:13,560 YOU CAN GO AHEAD AND ASK YOUR 6788 04:18:13,560 --> 04:18:15,000 QUESTION. 6789 04:18:15,000 --> 04:18:16,080 >> HI, THANK YOU. 6790 04:18:16,080 --> 04:18:19,360 ALWAYS FUN TO END ON YOUR VIDEOS 6791 04:18:19,360 --> 04:18:20,560 AND YOU'RE A JOY. 6792 04:18:20,560 --> 04:18:22,440 AND I THINK THAT TIED IN NICELY 6793 04:18:22,440 --> 04:18:23,400 TO WHAT KATE WAS PRESENTING SO 6794 04:18:23,400 --> 04:18:27,560 IT'S A COMBINED QUESTION FOR 6795 04:18:27,560 --> 04:18:28,600 NOEMI AND KATE. 6796 04:18:28,600 --> 04:18:30,400 KATE, YOU MENTIONED BRINGING THE 6797 04:18:30,400 --> 04:18:33,080 JOY AND THE FUN TO THE RURAL 6798 04:18:33,080 --> 04:18:34,360 COMMUNITY ACTIVITIES AND THEN 6799 04:18:34,360 --> 04:18:36,320 NOEMI, YOU DEFINITELY BRING THE 6800 04:18:36,320 --> 04:18:38,240 JOY AND FUN TO THE MEDICAL 6801 04:18:38,240 --> 04:18:38,480 CLINIC. 6802 04:18:38,480 --> 04:18:42,440 SO HOW DO WE THEN BRIDGE THAT 6803 04:18:42,440 --> 04:18:44,600 JOY AND THE FUN TO THE RURAL 6804 04:18:44,600 --> 04:18:48,720 COMMUNITIES FOR THEN TRYING TO 6805 04:18:48,720 --> 04:18:57,280 INCREASE RESEARCH ENGAGEMENT? 6806 04:18:57,280 --> 04:18:58,240 OR DID KATE LEAVE? 6807 04:18:58,240 --> 04:19:00,360 >> I'M HERE. 6808 04:19:00,360 --> 04:19:01,040 SORRY. 6809 04:19:01,040 --> 04:19:01,360 I'M SORRY. 6810 04:19:01,360 --> 04:19:03,720 I DIDN'T HEAR THE QUESTION. 6811 04:19:03,720 --> 04:19:06,160 >> I WAS ASKING HOW DO WE 6812 04:19:06,160 --> 04:19:07,840 BRING -- SO NOEMI BRINGS THAT 6813 04:19:07,840 --> 04:19:09,120 JOY AND FUN TO A MEDICAL CLINIC 6814 04:19:09,120 --> 04:19:10,920 WHERE YOU CAN HAVE LOTS OF 6815 04:19:10,920 --> 04:19:12,320 EXPOSURE AND FREQUENT CONTACT 6816 04:19:12,320 --> 04:19:13,840 BUT THEN HOW DO WE BRING THAT 6817 04:19:13,840 --> 04:19:15,560 JOY AND THAT FUN THAT SHE WAS 6818 04:19:15,560 --> 04:19:16,760 DESCRIBING AND THE JOY AND FUN 6819 04:19:16,760 --> 04:19:19,800 YOU WERE SAYING IS ESSENTIAL TO 6820 04:19:19,800 --> 04:19:20,720 ENGAGING THE RURAL COMMUNITIES. 6821 04:19:20,720 --> 04:19:26,640 HOW DO WE BRIDGE THOSE TWO TO 6822 04:19:26,640 --> 04:19:32,040 BRIDGE RURAL INTO RESEARCH 6823 04:19:32,040 --> 04:19:32,360 PARTICIPATION? 6824 04:19:32,360 --> 04:19:32,880 >> KATE: SO, I GUESS -- 6825 04:19:32,880 --> 04:19:36,040 OBVIOUSLY THERE IS NO PERFECT 6826 04:19:36,040 --> 04:19:36,480 FIT. 6827 04:19:36,480 --> 04:19:37,560 BUT I THINK WHEN YOU'RE LOOKING 6828 04:19:37,560 --> 04:19:40,920 AT RURAL PARTICIPATION, ONE OF 6829 04:19:40,920 --> 04:19:41,760 THE THINGS THAT WE'VE DISCOVERED 6830 04:19:41,760 --> 04:19:43,720 BECAUSE WE HAVE QUITE A FEW 6831 04:19:43,720 --> 04:19:44,520 DOCTORS THAT HAVE JOINED FORCES 6832 04:19:44,520 --> 04:19:46,480 WITH US IN A LOT OF THERAPISTS 6833 04:19:46,480 --> 04:19:49,680 WHO HAVE JOINED FORCES WITH US. 6834 04:19:49,680 --> 04:19:51,600 WHEN YOU BEGIN TO CELEBRATE THAT 6835 04:19:51,600 --> 04:19:53,280 JOY, IT REALLY BECOMES VERY 6836 04:19:53,280 --> 04:19:54,640 ATTRACTIVE TO OTHER PEOPLE 6837 04:19:54,640 --> 04:19:57,000 WITHIN THE COMMUNITY. 6838 04:19:57,000 --> 04:19:59,040 AND THEY BEGIN TO SHARE IN AND 6839 04:19:59,040 --> 04:19:59,880 AMONG THEMSELVES. 6840 04:19:59,880 --> 04:20:05,280 SO, FOR EXAMPLE, I USE LIKE -- 6841 04:20:05,280 --> 04:20:06,000 DR. McCORMACK I DON'T THINK IS 6842 04:20:06,000 --> 04:20:07,160 ON THIS BUT HE HAS BEEN TO OUR 6843 04:20:07,160 --> 04:20:08,400 AREA BEFORE TO VISIT. 6844 04:20:08,400 --> 04:20:12,040 LIKE WE BROUGHT HIM IN. 6845 04:20:12,040 --> 04:20:14,520 AND I THINK ONE OF THE THINGS 6846 04:20:14,520 --> 04:20:16,760 THEN IS THOSE CONNECTIONS. 6847 04:20:16,760 --> 04:20:19,360 LIKE HOSTING THOSE CONNECTION 6848 04:20:19,360 --> 04:20:20,000 EVENTS BY WHICH YOU HAVE PARENTS 6849 04:20:20,000 --> 04:20:22,760 AND TEACHERS AND THERAPISTS AND 6850 04:20:22,760 --> 04:20:23,360 THEN OH, YES, THERE HAPPENS TO 6851 04:20:23,360 --> 04:20:25,000 BE A RESEARCH OPPORTUNITY 6852 04:20:25,000 --> 04:20:27,560 THROUGH THIS LOVELY FRIEND OF 6853 04:20:27,560 --> 04:20:27,840 MINE. 6854 04:20:27,840 --> 04:20:29,360 AND IT KIND OF SPEAKS ABOUT 6855 04:20:29,360 --> 04:20:31,800 GOING BACK TO HER TRUST-BUILDING 6856 04:20:31,800 --> 04:20:32,800 EXERCISES SHE IS TALKING ABOUT 6857 04:20:32,800 --> 04:20:34,120 IN BEGINNING TO BUILD THAT 6858 04:20:34,120 --> 04:20:34,680 COMMUNITY. 6859 04:20:34,680 --> 04:20:37,480 SO I GUESS THAT IS -- IT'S NOT A 6860 04:20:37,480 --> 04:20:38,800 PERFECT ANSWER. 6861 04:20:38,800 --> 04:20:40,280 I CAN GIVE YOU EXAMPLES. 6862 04:20:40,280 --> 04:20:41,480 IT'S WHAT WE HAVE DONE AND 6863 04:20:41,480 --> 04:20:43,120 EFFECTIVE WITH US TO BEGIN TO 6864 04:20:43,120 --> 04:20:44,880 BRIDGE THOSE CONNECTIONS LIKE 6865 04:20:44,880 --> 04:20:47,360 AND WE HAVE SENT MANY -- ONE OF 6866 04:20:47,360 --> 04:20:50,320 OUR SCHOLARSHIP RECIPIENTS HAD A 6867 04:20:50,320 --> 04:20:51,840 KIDDO WHO HAD SOMETHING CALLED 6868 04:20:51,840 --> 04:20:54,800 NGL1 AND PARTICIPATED IN MANY OF 6869 04:20:54,800 --> 04:20:57,840 THE NIH'S RESEARCH TRIALS. 6870 04:20:57,840 --> 04:21:00,120 BUT IT'S BEGINNING TO BRIDGE 6871 04:21:00,120 --> 04:21:01,440 SOME OF THOSE GAPS. 6872 04:21:01,440 --> 04:21:03,360 >> BUT IT SOUNDS LIKE TRAVELING 6873 04:21:03,360 --> 04:21:04,000 TO THE RURAL COMMUNITIES IS PART 6874 04:21:04,000 --> 04:21:05,640 OF THE COMMUNITY TO BUILD THE 6875 04:21:05,640 --> 04:21:05,840 TRUST. 6876 04:21:05,840 --> 04:21:07,520 >> I THINK YOU'RE GOING TO HAVE 6877 04:21:07,520 --> 04:21:09,280 A REALLY HARD TIME BUILDING 6878 04:21:09,280 --> 04:21:11,320 TRUST IN RURAL COMMUNITIES 6879 04:21:11,320 --> 04:21:13,480 WITHOUT GETTING SOME AMBASSADORS 6880 04:21:13,480 --> 04:21:15,280 OUT INTO THOSE RURAL 6881 04:21:15,280 --> 04:21:15,600 COMMUNITIES. 6882 04:21:15,600 --> 04:21:18,760 IT DOESN'T NECESSARILY HAVE TO 6883 04:21:18,760 --> 04:21:20,400 BE -- BUT A REPRESENTATIVE OUT 6884 04:21:20,400 --> 04:21:23,440 IN THERE MEANS THE WORLD BECAUSE 6885 04:21:23,440 --> 04:21:26,000 WE HAVE PEOPLE -- IT'S DIFFICULT 6886 04:21:26,000 --> 04:21:28,720 TO EACH GET PEOPLE FROM ST. 6887 04:21:28,720 --> 04:21:32,600 LOUIS TO COME TO OUR RURAL 6888 04:21:32,600 --> 04:21:33,000 AREAS. 6889 04:21:33,000 --> 04:21:37,000 >> BUT TO BUILD ON WHAT KATE 6890 04:21:37,000 --> 04:21:44,480 JUST SAID, HOW CAN ONE EVEN 6891 04:21:44,480 --> 04:21:45,880 UNDERSTAND WHAT MAYBE THE 6892 04:21:45,880 --> 04:21:48,600 EXPERIENCE AND THE BARRIERS 6893 04:21:48,600 --> 04:21:49,440 RECRUIT AND PARTICIPATION 6894 04:21:49,440 --> 04:21:50,880 WITHOUT GOING, WITHOUT SEEING 6895 04:21:50,880 --> 04:21:52,560 IT, RIGHT? 6896 04:21:52,560 --> 04:21:55,120 SO UNDERSTANDING THAT IT'S NOT 6897 04:21:55,120 --> 04:21:56,920 JUST GOING FOR THE SAKE OF 6898 04:21:56,920 --> 04:21:59,920 SHOWING YOUR FACE IT'S GOING TO 6899 04:21:59,920 --> 04:22:01,480 UNDERSTAND THE COMMUNITY AND 6900 04:22:01,480 --> 04:22:03,840 GETTING A FEEL FOR THE PERSON 6901 04:22:03,840 --> 04:22:06,600 WHO COMES TO THE EVENT AND 6902 04:22:06,600 --> 04:22:08,400 ACTUALLY DROVE TWO HOURS JUST TO 6903 04:22:08,400 --> 04:22:12,440 GET TO THAT ONE-HOUR COOKIE 6904 04:22:12,440 --> 04:22:14,080 DECORATING COMMUNITY BUILDING 6905 04:22:14,080 --> 04:22:17,200 ACTIVITY TO UNDERSTAND THE 6906 04:22:17,200 --> 04:22:19,800 DYNAMIC OF THE GROUP. 6907 04:22:19,800 --> 04:22:20,280 KATE MENTIONED LANGUAGE. 6908 04:22:20,280 --> 04:22:21,880 SHE MENTIONED DON'T CALL IT 6909 04:22:21,880 --> 04:22:23,800 SUPPORT GROUP. 6910 04:22:23,800 --> 04:22:24,840 CALL IT FRIENDS OF FUN. 6911 04:22:24,840 --> 04:22:28,000 YOU LISTEN TO PEOPLE. 6912 04:22:28,000 --> 04:22:29,080 YOU LISTEN TO THE LANGUAGE THAT 6913 04:22:29,080 --> 04:22:30,160 IS USED. 6914 04:22:30,160 --> 04:22:32,760 YOU TRY AND MAKE MISTAKES IN 6915 04:22:32,760 --> 04:22:35,040 TERMS OF HOW YOU EXPRESS 6916 04:22:35,040 --> 04:22:37,280 YOURSELF TO REALLY LEARN HOW TO 6917 04:22:37,280 --> 04:22:38,240 COMMUNICATE EFFECTIVELY. 6918 04:22:38,240 --> 04:22:45,280 I ALWAYS TALK ABOUT IN 6919 04:22:45,280 --> 04:22:45,840 CALIFORNIA, DEPARTMENT OF 6920 04:22:45,840 --> 04:22:46,600 DEVELOPMENTAL SERVICES ARE 6921 04:22:46,600 --> 04:22:48,480 MANAGED THROUGH A SYSTEM OF 6922 04:22:48,480 --> 04:22:49,080 REGIONAL CENTERS. 6923 04:22:49,080 --> 04:22:50,600 AND SO ONE TIME I SAID, I'M 6924 04:22:50,600 --> 04:22:52,280 GOING TO REFER YOU TO THE 6925 04:22:52,280 --> 04:22:52,920 REGIONAL CENTER. 6926 04:22:52,920 --> 04:22:55,880 NO BIG DEAL. 6927 04:22:55,880 --> 04:22:57,600 I GOT FIRED BY THAT FAMILY WHO 6928 04:22:57,600 --> 04:22:59,640 DIDN'T COME BACK FOR THREE 6929 04:22:59,640 --> 04:22:59,840 YEARS. 6930 04:22:59,840 --> 04:23:02,440 THEY CAME BACK, THEY WERE FROM 6931 04:23:02,440 --> 04:23:02,680 ALGAIA. 6932 04:23:02,680 --> 04:23:03,160 I SAID, WHAT HAPPENED? 6933 04:23:03,160 --> 04:23:06,560 WELL, YOU WANTED TO 6934 04:23:06,560 --> 04:23:08,240 INSTITUTIONALIZE MY CHILD 6935 04:23:08,240 --> 04:23:11,000 BECAUSE, CENTER, TO THEM MEANT 6936 04:23:11,000 --> 04:23:11,400 INSTITUTIONALIZE. 6937 04:23:11,400 --> 04:23:13,640 I LEARNED THAT BECAUSE I MADE A 6938 04:23:13,640 --> 04:23:15,120 MISTAKE AND NOW I ALWAYS SAY, 6939 04:23:15,120 --> 04:23:20,880 I'M GOING TO REFER YOU TO A CASE 6940 04:23:20,880 --> 04:23:25,280 MANAGEMENT OR A REGIONAL CENTER. 6941 04:23:25,280 --> 04:23:26,680 IT'S AN ORGANIZATION, NOT A 6942 04:23:26,680 --> 04:23:28,520 PHYSICAL PLACE. 6943 04:23:28,520 --> 04:23:29,200 THESE ARE THINGS YOU ONLY GET TO 6944 04:23:29,200 --> 04:23:31,840 LEARN IF YOU GET TO HAVE THE 6945 04:23:31,840 --> 04:23:32,360 INTERACTION AND MAKE THAT 6946 04:23:32,360 --> 04:23:33,280 MISTAKE, RIGHT? 6947 04:23:33,280 --> 04:23:35,920 SO THE POWER OF RELATIONSHIPS, 6948 04:23:35,920 --> 04:23:39,600 THE POWER OF BEING THERE MEANS 6949 04:23:39,600 --> 04:23:39,840 SO MUCH. 6950 04:23:39,840 --> 04:23:41,640 SO IT SHOULD BE BUILT INTO THE 6951 04:23:41,640 --> 04:23:43,960 BUDGET FOR RESEARCH STUDIES. 6952 04:23:43,960 --> 04:23:45,920 >> CAN I PIGGYBACK OFF WHAT 6953 04:23:45,920 --> 04:23:46,560 NOEMI SAID ABOUT THE IMPORTANCE 6954 04:23:46,560 --> 04:23:47,720 OF LANGUAGE? 6955 04:23:47,720 --> 04:23:49,280 IT VERY MUCH MATTERS. 6956 04:23:49,280 --> 04:23:53,040 WITHIN OUR COMMUNITY, HAVING 6957 04:23:53,040 --> 04:23:53,600 PROFESSIONALS WHO UNDERSTAND 6958 04:23:53,600 --> 04:23:55,440 LIKE PERSON-FIRST VERSUS 6959 04:23:55,440 --> 04:23:57,200 IDENTITY-FIRST ADDITIONALLY, 6960 04:23:57,200 --> 04:23:58,760 BECAUSE ONE OF THE THINGS, AND 6961 04:23:58,760 --> 04:24:01,120 I'M GOING TO OFFEND SOME PEOPLE 6962 04:24:01,120 --> 04:24:02,000 AND I DON'T MEAN TO. 6963 04:24:02,000 --> 04:24:03,280 IT'S THE ONLY EXAMPLE. 6964 04:24:03,280 --> 04:24:06,040 I WAS SITTING IN ONE OF MY FIRST 6965 04:24:06,040 --> 04:24:07,120 MEETINGS RELATED TO ELLIOT. 6966 04:24:07,120 --> 04:24:08,720 IT WASN'T ELLIOT, ANOTHER CHILD 6967 04:24:08,720 --> 04:24:12,480 WHO HAPPENED TO HAVE DOWN 6968 04:24:12,480 --> 04:24:12,760 SYNDROME. 6969 04:24:12,760 --> 04:24:13,640 AND THE SPECIAL EDUCATION 6970 04:24:13,640 --> 04:24:16,000 DIRECTOR AT THAT TIME REFERRED 6971 04:24:16,000 --> 04:24:21,800 TO THE CHILD AS A DOWNSIE. 6972 04:24:21,800 --> 04:24:23,600 AND THAT WAS THE SPECIAL 6973 04:24:23,600 --> 04:24:25,280 EDUCATION DIRECTOR FOR NOT A 6974 04:24:25,280 --> 04:24:29,440 SMALL DISTRICT IN MY AREA. 6975 04:24:29,440 --> 04:24:31,480 THE LOOK ON MY FACE WHEN YOU'RE 6976 04:24:31,480 --> 04:24:32,480 DEALING WITH A PROFESSIONAL WHO 6977 04:24:32,480 --> 04:24:34,880 USES THAT KIND OF A LANGUAGE, 6978 04:24:34,880 --> 04:24:43,320 AND THIS IS PROBABLY 2010, IS 6979 04:24:43,320 --> 04:24:43,640 UNACCEPTABLE. 6980 04:24:43,640 --> 04:24:46,520 HOWEVER, THE REALITY IS, MANY 6981 04:24:46,520 --> 04:24:47,360 FAMILIES LOVED HIM BECAUSE THEY 6982 04:24:47,360 --> 04:24:49,280 DIDN'T EVEN REALIZE THAT THAT 6983 04:24:49,280 --> 04:24:51,800 WAS INAPPROPRIATE LANGUAGE. 6984 04:24:51,800 --> 04:24:54,200 AND I HOPE THAT HORRIFIES 6985 04:24:54,200 --> 04:24:55,560 EVERYBODY ON THIS PANEL OR ON 6986 04:24:55,560 --> 04:24:56,400 THIS CENTER. 6987 04:24:56,400 --> 04:24:59,840 BUT JUST TO THAT POINT OF, IT'S 6988 04:24:59,840 --> 04:25:03,280 ALSO AN EDUCATION COMPONENT AS 6989 04:25:03,280 --> 04:25:04,080 WELL. 6990 04:25:04,080 --> 04:25:08,680 >> AND I WOULD LIKE TO ADD TO 6991 04:25:08,680 --> 04:25:10,640 THIS DISCUSSION OF THE POINT 6992 04:25:10,640 --> 04:25:12,920 THAT KATE, YOU BROUGHT UP AND OF 6993 04:25:12,920 --> 04:25:15,520 COURSE NOEMI IN YOUR 6994 04:25:15,520 --> 04:25:15,840 PRESENTATION. 6995 04:25:15,840 --> 04:25:17,240 I THINK THERE ARE A LOT OF 6996 04:25:17,240 --> 04:25:20,560 SIMILARITIES IN WHAT WE SEE IN 6997 04:25:20,560 --> 04:25:21,920 LOW AND MIDDLE-INCOME COUNTRIES 6998 04:25:21,920 --> 04:25:23,560 AND ALSO IN THE RURAL 6999 04:25:23,560 --> 04:25:26,080 COMMUNITIES HERE IN THE U.S. 7000 04:25:26,080 --> 04:25:28,920 SO I THINK THE LESSONS IN WE ARE 7001 04:25:28,920 --> 04:25:30,640 LEARNING FROM OUR INVESTMENTS IN 7002 04:25:30,640 --> 04:25:33,880 LOW AND MIDDLE-INCOME COUNTRIES 7003 04:25:33,880 --> 04:25:36,080 THE CULTURAL BARRIERS, THE 7004 04:25:36,080 --> 04:25:37,640 LANGUAGE, MEETING THE PEOPLE 7005 04:25:37,640 --> 04:25:42,880 WHERE THEY ARE, HAVE TRUSTED 7006 04:25:42,880 --> 04:25:43,880 COMMUNITY MEMBERS OR RESEARCHERS 7007 04:25:43,880 --> 04:25:45,320 WHO ARE WORKING IN DIFFERENT 7008 04:25:45,320 --> 04:25:45,600 COUNTRIES. 7009 04:25:45,600 --> 04:25:51,680 THEY ACTUALLY PARTNER WITH LOCAL 7010 04:25:51,680 --> 04:25:54,520 LEADERS, CAPACITY BUILDING IS 7011 04:25:54,520 --> 04:25:57,360 SOMETHING THAT IS PART OF A LOT 7012 04:25:57,360 --> 04:25:59,120 OF THE PROGRAMS THAT WE FUND 7013 04:25:59,120 --> 04:26:00,920 HERE IN LOW AND MILT INCOME 7014 04:26:00,920 --> 04:26:03,880 COUNTRIES, AGAIN TO BUILD 7015 04:26:03,880 --> 04:26:08,040 INFRASTRUCTURE IN THOSE PLACES 7016 04:26:08,040 --> 04:26:08,760 SO THAT PARTNERSHIPS CAN 7017 04:26:08,760 --> 04:26:09,040 CONTINUE. 7018 04:26:09,040 --> 04:26:13,600 AND I HAVE TO ECHO DR. NATHAN 7019 04:26:13,600 --> 04:26:18,720 STINSON, THE LAST LINE FROM THE 7020 04:26:18,720 --> 04:26:19,360 ELENA GRIGORENKO SLIDE. 7021 04:26:19,360 --> 04:26:21,080 I HAVE TO USE THAT WITH 7022 04:26:21,080 --> 04:26:21,360 PERMISSION. 7023 04:26:21,360 --> 04:26:23,360 THAT EXIST IN SUCH A WAY THAT 7024 04:26:23,360 --> 04:26:25,280 RETURN IS POSSIBLE. 7025 04:26:25,280 --> 04:26:28,840 AND I THINK THAT HIGHLIGHTS THE 7026 04:26:28,840 --> 04:26:30,760 TWO-WAY COMMUNICATION OF TWO-WAY 7027 04:26:30,760 --> 04:26:34,000 STREET WHERE WE ARE LEARNING 7028 04:26:34,000 --> 04:26:36,680 FROM THE COMMUNITIES WHAT THE 7029 04:26:36,680 --> 04:26:40,520 NEEDS ARE. 7030 04:26:40,520 --> 04:26:42,280 AND THEN MEETING THEM AT THAT 7031 04:26:42,280 --> 04:26:43,920 POINT RATHER THAN SAYING OKAY, 7032 04:26:43,920 --> 04:26:49,600 THIS IS WHAT WE THINK YOU NEED. 7033 04:26:49,600 --> 04:26:52,680 SO, AGAIN A REMINDER THAT THE 7034 04:26:52,680 --> 04:26:57,120 QUESTION AND ANSWERS ARE ALSO 7035 04:26:57,120 --> 04:27:02,320 BEING INTERPRETED INTO THE 7036 04:27:02,320 --> 04:27:03,920 SPANISH SO A REMINDER TO ALL OF 7037 04:27:03,920 --> 04:27:06,040 US TO SPEAK SLOWLY. 7038 04:27:06,040 --> 04:27:09,200 IN FACT, LINDA IS OVER AT THAT 7039 04:27:09,200 --> 04:27:09,520 ROLE AS WELL. 7040 04:27:09,520 --> 04:27:13,040 SO THAT WE CAN GIVE THEM AN 7041 04:27:13,040 --> 04:27:17,280 OPPORTUNITY TO ASK QUESTIONS AND 7042 04:27:17,280 --> 04:27:20,400 THEN THE INTERPRETER WILL 7043 04:27:20,400 --> 04:27:22,240 INTERPRET THAT FOR THEM FOR 7044 04:27:22,240 --> 04:27:23,920 THOSE ATTENDEES. 7045 04:27:23,920 --> 04:27:25,560 >> THERE IS A QUESTION IN THE 7046 04:27:25,560 --> 04:27:28,320 CHAT FOR ANY OF THE PANELISTS. 7047 04:27:28,320 --> 04:27:31,520 HOW CAN WE GET MORE MEDICAL 7048 04:27:31,520 --> 04:27:32,760 PROFESSIONALS TO BE AS 7049 04:27:32,760 --> 04:27:35,520 PASSIONATE ABOUT DOWN SYNDROME 7050 04:27:35,520 --> 04:27:37,280 AS YOU ALL ARE? 7051 04:27:37,280 --> 04:27:40,240 AND PARENTHESES, WE NEED TO MAKE 7052 04:27:40,240 --> 04:27:45,920 THEM SEE WHAT THEY ARE MISSING. 7053 04:27:45,920 --> 04:27:54,600 ABSOLUTELY. 7054 04:27:54,600 --> 04:27:56,320 >> I THINK ONE OF THE THINGS WE 7055 04:27:56,320 --> 04:27:58,480 CAN ALL DO TO MAKE THAT HAPPEN 7056 04:27:58,480 --> 04:27:59,840 IS ADVOCATE FOR HEALTH CARE 7057 04:27:59,840 --> 04:28:02,080 REFORM SO THERE ISN'T THE WILD 7058 04:28:02,080 --> 04:28:04,160 EXPECTATION THAT WE CAN DO ALL 7059 04:28:04,160 --> 04:28:07,360 OF THIS AND MORE IN 15 MINUTES 7060 04:28:07,360 --> 04:28:12,960 OF THE MYTHICAL 15-MINUTE DOCTOR 7061 04:28:12,960 --> 04:28:13,240 APPOINTMENT. 7062 04:28:13,240 --> 04:28:15,720 AND WE SUPPORT THE EXPANSION OF 7063 04:28:15,720 --> 04:28:19,800 AN APPROPRIATE HEALTH CARE 7064 04:28:19,800 --> 04:28:21,240 WORKFORCE AND EXTEND INSURANCE 7065 04:28:21,240 --> 04:28:22,640 COVERAGE TO EVERYONE. 7066 04:28:22,640 --> 04:28:25,280 I WANT TO AGREE WITH KATE. 7067 04:28:25,280 --> 04:28:29,800 PROVIDERS SHOULD JOIN THE DOWN 7068 04:28:29,800 --> 04:28:32,440 SYNDROME MEDICAL GROUP AND WE 7069 04:28:32,440 --> 04:28:33,320 ARE MEMBERS -- 7070 04:28:33,320 --> 04:28:36,000 [ MULTIPLE SPEAKERS ] 7071 04:28:36,000 --> 04:28:39,280 >> -- PHYSICIANS TO RULE I CAN'T 7072 04:28:39,280 --> 04:28:39,520 RECALL. 7073 04:28:39,520 --> 04:28:40,160 EVERY PHYSICIAN WE SENT, I THINK 7074 04:28:40,160 --> 04:28:42,440 SIX DOCTORS AND I THINK THREE 7075 04:28:42,440 --> 04:28:43,080 DIFFERENT THERAPISTS. 7076 04:28:43,080 --> 04:28:44,640 EVERY ONE OF THEM WHEN THEY HAVE 7077 04:28:44,640 --> 04:28:46,200 DONE THIS HAVE SAID IT'S JUST 7078 04:28:46,200 --> 04:28:47,480 BEEN A WEALTH OF INFORMATION FOR 7079 04:28:47,480 --> 04:28:51,960 THEM THAT THEY HAVE BEEN ABLE TO 7080 04:28:51,960 --> 04:28:53,360 TAKE BACK. 7081 04:28:53,360 --> 04:28:58,160 >> AND I'LL PUT IN A PLUG FOR 7082 04:28:58,160 --> 04:28:59,480 DISMI R AND NDSC. 7083 04:28:59,480 --> 04:29:02,800 WHEN I FIRST STARTED OUT I 7084 04:29:02,800 --> 04:29:04,080 LOOKED UP -- IS THERE A 7085 04:29:04,080 --> 04:29:07,120 CONFERENCE SPECIFIC TO DOWN 7086 04:29:07,120 --> 04:29:07,960 SYNDROME? 7087 04:29:07,960 --> 04:29:09,640 OH, IT'S IN ORLANDO IN THREE 7088 04:29:09,640 --> 04:29:10,160 DAYS! 7089 04:29:10,160 --> 04:29:11,560 I BETTER GET THERE. 7090 04:29:11,560 --> 04:29:13,960 I DIDN'T KNOW THAT IT EXISTED. 7091 04:29:13,960 --> 04:29:15,960 I WALKED INTO THE ROOM AS THE 7092 04:29:15,960 --> 04:29:17,280 CONFERENCE JUST STARTED ASKING 7093 04:29:17,280 --> 04:29:19,600 AM I IN THE RIGHT PLACE? 7094 04:29:19,600 --> 04:29:22,240 YOU ABOUT I ALSO HAD BEEN 7095 04:29:22,240 --> 04:29:25,280 ATTENDING NDSC AND SYMPOSIUMS 7096 04:29:25,280 --> 04:29:27,920 AND SEMINARS AND THAT HAS 7097 04:29:27,920 --> 04:29:32,240 ABSOLUTELY BUILT MY KNOWLEDGE 7098 04:29:32,240 --> 04:29:33,600 AND GROWN MY EXCITEMENT FOR ALL 7099 04:29:33,600 --> 04:29:36,840 THAT THERE IS TO KNOW ABOUT DOWN 7100 04:29:36,840 --> 04:29:37,080 SYNDROME. 7101 04:29:37,080 --> 04:29:38,680 AND I ALSO SAY THAT THE MORE 7102 04:29:38,680 --> 04:29:40,520 PEOPLE WITH DOWN SYNDROME YOU 7103 04:29:40,520 --> 04:29:43,520 GET TO KNOW, THE HARDER IT IS TO 7104 04:29:43,520 --> 04:29:44,760 NOT GET PASSIONATE ABOUT TAKING 7105 04:29:44,760 --> 04:29:46,920 CARE OF THEM. 7106 04:29:46,920 --> 04:29:49,120 THEY HAVE INSPIRED ME IN WAYS 7107 04:29:49,120 --> 04:29:56,200 THAT I CAN'T QUITE PUT INTO 7108 04:29:56,200 --> 04:29:56,600 WORDS. 7109 04:29:56,600 --> 04:29:58,520 >> I'M A FAN OF LOCAL CARE, IF 7110 04:29:58,520 --> 04:30:00,480 AT ALL POSSIBLE. 7111 04:30:00,480 --> 04:30:03,720 AND SO I WOULD ENCOURAGE YOU 7112 04:30:03,720 --> 04:30:06,480 PROVIDERS TO JOIN. 7113 04:30:06,480 --> 04:30:10,600 WE HAVE A VIRTUAL PRESENTATION 7114 04:30:10,600 --> 04:30:15,240 SERIES WITH THE FOCUS BEING ON 7115 04:30:15,240 --> 04:30:15,600 LOCAL PROVIDERS. 7116 04:30:15,600 --> 04:30:17,240 AND THEN WE ARE WORKING ON 7117 04:30:17,240 --> 04:30:19,280 ANOTHER PROJECT, HOPEFULLY IN 7118 04:30:19,280 --> 04:30:19,920 THE EARLY PART OF NEXT YEAR THAT 7119 04:30:19,920 --> 04:30:21,760 WE'LL BE ABLE TO SUPPORT LOCAL 7120 04:30:21,760 --> 04:30:23,760 PROVIDERS TO PROVIDE CARE FOR 7121 04:30:23,760 --> 04:30:24,640 PEOPLE WITH DOWN SYNDROME IN 7122 04:30:24,640 --> 04:30:28,280 THEIR OWN COMMUNITY. 7123 04:30:28,280 --> 04:30:29,560 I HAVE A REAL ACTION FOR THAT 7124 04:30:29,560 --> 04:30:31,680 BECAUSE 35 YEARS AGO I WAS A 7125 04:30:31,680 --> 04:30:33,320 DOCTOR IN A SMALL TOWN WHO WAS 7126 04:30:33,320 --> 04:30:34,680 TRYING TO CARE FOR PEOPLE WITH 7127 04:30:34,680 --> 04:30:36,320 DOWN SYNDROME WITH NO 7128 04:30:36,320 --> 04:30:37,040 INFORMATION WHATSOEVER TO 7129 04:30:37,040 --> 04:30:38,920 SUPPORT WHAT I WAS TRYING TO DO. 7130 04:30:38,920 --> 04:30:41,880 SO I GET IT VERY PERSONALLY. 7131 04:30:41,880 --> 04:30:44,120 SO, I THINK INFORMATION IS -- 7132 04:30:44,120 --> 04:30:45,560 DOESN'T SOLVE ALL THE PROBLEMS 7133 04:30:45,560 --> 04:30:48,480 IN LIFE BUT IT'S A REAL GOOD 7134 04:30:48,480 --> 04:30:51,960 FIRST START. 7135 04:30:51,960 --> 04:30:55,120 >> MAYBE THAT'S THE ANSWER TO 7136 04:30:55,120 --> 04:30:55,760 THE QUESTION. 7137 04:30:55,760 --> 04:30:56,720 SEND MORE MEDICAL PROFESSIONALS 7138 04:30:56,720 --> 04:31:02,960 TO THE DISMIC MEETING. 7139 04:31:02,960 --> 04:31:05,320 >> AND AGAIN, WE HAVE ADVOCACY 7140 04:31:05,320 --> 04:31:08,560 ORGANIZATIONS REPRESENTED HERE. 7141 04:31:08,560 --> 04:31:11,440 WE HAVE GOVERNMENT 7142 04:31:11,440 --> 04:31:12,040 ORGANIZATIONS. 7143 04:31:12,040 --> 04:31:15,520 THERE IS NO INCENTIVE INHERENTLY 7144 04:31:15,520 --> 04:31:18,000 TO SAY, HEY, I WILL GO AND TAKE 7145 04:31:18,000 --> 04:31:20,560 CARE OF MEDICALLY-COMPLEX 7146 04:31:20,560 --> 04:31:21,560 PATIENTS. 7147 04:31:21,560 --> 04:31:22,120 NONE. 7148 04:31:22,120 --> 04:31:27,000 AND SO, EITHER YOU HAVE SOME 7149 04:31:27,000 --> 04:31:28,640 PERSONAL CONNECTION OR SOME 7150 04:31:28,640 --> 04:31:30,440 PASSION ON THE INSIDE BUT THERE 7151 04:31:30,440 --> 04:31:31,640 ARE NO INCENTIVE. 7152 04:31:31,640 --> 04:31:36,920 THERE IS NO BONUS YOU GET FROM 7153 04:31:36,920 --> 04:31:38,800 DEPARTMENT OF HEALTH CARE 7154 04:31:38,800 --> 04:31:39,960 SERVICES OR WHATEVER THESE 7155 04:31:39,960 --> 04:31:43,040 INSTITUTIONS ARE CALLED. 7156 04:31:43,040 --> 04:31:44,120 WHERE IS THAT ADVOCACY? 7157 04:31:44,120 --> 04:31:48,600 HOW DO WE INCENTIVIZE TAKING 7158 04:31:48,600 --> 04:31:51,640 CARE WELL OF HUMAN BEINGS WITH 7159 04:31:51,640 --> 04:31:55,240 DISABILITIES IN THIS COUNTRY? 7160 04:31:55,240 --> 04:31:57,280 FOR-PROFIT HEALTH CARE SYSTEM? 7161 04:31:57,280 --> 04:31:58,600 THAT JUST ISN'T POSSIBLY 7162 04:31:58,600 --> 04:31:59,760 INCENTIVIZED BECAUSE IT TAKES 7163 04:31:59,760 --> 04:32:03,960 MORE TIME AND MORE EXPERTISE. 7164 04:32:03,960 --> 04:32:06,160 THAT'S WHERE WE HAVE TO FUND THE 7165 04:32:06,160 --> 04:32:07,920 CLINICAL PROGRAMS THAT ARE DOING 7166 04:32:07,920 --> 04:32:09,960 THIS WORK SO THAT THEY CAN BE 7167 04:32:09,960 --> 04:32:12,040 WORKFORCE DEVELOPMENT PIPELINES 7168 04:32:12,040 --> 04:32:13,160 AND THEY CAN BECOME MODELS FOR 7169 04:32:13,160 --> 04:32:15,480 THE TYPE OF CARE THAT WE HOPE 7170 04:32:15,480 --> 04:32:18,560 FOR FOR EVERY PERSON FOR DOWN 7171 04:32:18,560 --> 04:32:23,280 SYNDROME IN THIS COUNTRY. 7172 04:32:23,280 --> 04:32:23,760 >> EXCELLENT POINT. 7173 04:32:23,760 --> 04:32:24,400 HOPEFULLY THOSE THAT NEED WILL 7174 04:32:24,400 --> 04:32:28,520 GET OTHER PEOPLE TO FOLLOW. 7175 04:32:28,520 --> 04:32:30,360 SO, IT DOES REALLY REQUIRE JUST 7176 04:32:30,360 --> 04:32:32,160 AS YOU MENTIONED, A DIFFERENT 7177 04:32:32,160 --> 04:32:35,960 WAY OF LOOKING AT WHAT THE 7178 04:32:35,960 --> 04:32:37,760 HEALTH CARE ENTERPRISE REALLY 7179 04:32:37,760 --> 04:32:40,280 SHOULD BE AND WHAT SHOULD BE THE 7180 04:32:40,280 --> 04:32:45,280 MOST IMPORTANT ASPECTS OF THAT 7181 04:32:45,280 --> 04:32:48,800 ENTERPRISE. 7182 04:32:48,800 --> 04:32:50,360 DR. LEY HAS HER HAND UP. 7183 04:32:50,360 --> 04:32:51,960 >> FIRST I REALLY APPRECIATE ALL 7184 04:32:51,960 --> 04:32:53,560 OF THE SPEAKERS AND I REALLY 7185 04:32:53,560 --> 04:32:57,280 WANT TO THANK YOU FOR YOUR 7186 04:32:57,280 --> 04:32:58,240 GREATEST AND DEDICATION TO THE 7187 04:32:58,240 --> 04:32:59,320 DOWN SYNDROME COMMUNITY I. 7188 04:32:59,320 --> 04:33:01,320 I WAS REALLY MOVED ABOUT WHAT 7189 04:33:01,320 --> 04:33:03,920 YOU HAVE DONE AND DOING. 7190 04:33:03,920 --> 04:33:06,840 AND YOU MENTIONED MORE SUPPORT 7191 04:33:06,840 --> 04:33:09,280 FOR THE CLINICAL PROGRAM AS 7192 04:33:09,280 --> 04:33:11,280 NEEDED. 7193 04:33:11,280 --> 04:33:14,040 COULD YOU GIVE US SOME EXAMPLES 7194 04:33:14,040 --> 04:33:18,240 OF HOW NIH COULD SPECIFICALLY 7195 04:33:18,240 --> 04:33:20,800 FACILITATE YOUR WORK FOR THE 7196 04:33:20,800 --> 04:33:25,280 ENGAGEMENT OF A MORE DIVERSE 7197 04:33:25,280 --> 04:33:27,920 POPULATION? 7198 04:33:27,920 --> 04:33:29,520 THANK YOU. 7199 04:33:29,520 --> 04:33:36,200 >> THE PROBNOEMI SPINAZZI? 7200 04:33:36,200 --> 04:33:36,880 >> CAN YOU REPEAT THE QUESTION 7201 04:33:36,880 --> 04:33:38,720 SO I CAN MAKE SURE I UNDERSTAND 7202 04:33:38,720 --> 04:33:38,880 IT? 7203 04:33:38,880 --> 04:33:40,680 >> I THINK YOU MENTIONED IF 7204 04:33:40,680 --> 04:33:42,560 THERE WILL BE MORE SUPPORT FOR 7205 04:33:42,560 --> 04:33:45,280 THE CLINICAL PROGRAM AS NEEDED, 7206 04:33:45,280 --> 04:33:46,880 THAT WOULD BE GREAT. 7207 04:33:46,880 --> 04:33:50,400 SO WHAT DO YOU THINK THE NIH 7208 04:33:50,400 --> 04:33:53,280 COULD FACILITATE THAT TO PROVIDE 7209 04:33:53,280 --> 04:33:59,760 THOSE SUPPORTS TO ENGAGE A MORE 7210 04:33:59,760 --> 04:34:00,320 DIVERSE OBSTRUCTION. 7211 04:34:00,320 --> 04:34:00,560 THANKS. 7212 04:34:00,560 --> 04:34:03,000 >> NOEMI SPINAZZI: THANK YOU. 7213 04:34:03,000 --> 04:34:08,240 I MEAN, I AM -- MAYBE DREAMING 7214 04:34:08,240 --> 04:34:08,440 HERE. 7215 04:34:08,440 --> 04:34:10,760 BUT MUCH LIKE THERE ARE 7216 04:34:10,760 --> 04:34:12,640 MENTORSHIP RESEARCH AWARDS, 7217 04:34:12,640 --> 04:34:17,040 ET CETERA, COULD THERE BE YOU 7218 04:34:17,040 --> 04:34:20,000 KNOW, CLINICAL PIPELINE AWARDS? 7219 04:34:20,000 --> 04:34:24,440 THINGS THAT WILL NOT NECESSARILY 7220 04:34:24,440 --> 04:34:27,600 HAVE RESEARCH GOALS ATTACHED TO 7221 04:34:27,600 --> 04:34:29,480 IT, BUT BECAUSE WE UNDERSTAND 7222 04:34:29,480 --> 04:34:31,680 THAT TO DIVERSIFY PARTICIPANTS, 7223 04:34:31,680 --> 04:34:34,200 WE NEED TO SUPPORT THE CLINICAL 7224 04:34:34,200 --> 04:34:36,680 PROGRAMS, THERE IS BUILT-IN 7225 04:34:36,680 --> 04:34:39,040 FINANCIAL SUPPORT FOR THAT AND 7226 04:34:39,040 --> 04:34:40,880 CREATING A SYSTEM FOR THOSE 7227 04:34:40,880 --> 04:34:45,960 AWARDS TO BE GIVEN AND TO BE 7228 04:34:45,960 --> 04:34:50,400 GIVEN WITHOUT A MILLION BARRI 7229 04:34:50,400 --> 04:34:50,680 BARRIERS. 7230 04:34:50,680 --> 04:34:54,160 IS IT NIH PARTNERING WITH OTHER 7231 04:34:54,160 --> 04:34:55,360 ORGANIZATIONS, GOVERNMENT 7232 04:34:55,360 --> 04:34:59,120 ORGANIZATIONS IN A WAY THAT 7233 04:34:59,120 --> 04:35:01,200 SLOWLY US CLINICIANS DON'T HAVE 7234 04:35:01,200 --> 04:35:02,840 ACCESS TO TO SAY, HEY, THIS IS 7235 04:35:02,840 --> 04:35:04,200 WHAT WE ARE HEARING. 7236 04:35:04,200 --> 04:35:08,680 HOW DO YOU ENVISION THIS THROUGH 7237 04:35:08,680 --> 04:35:11,080 THE HHS DEPARTMENT OR WHATEVER 7238 04:35:11,080 --> 04:35:12,320 ELSE IT MIGHT BE. 7239 04:35:12,320 --> 04:35:15,920 THE NIH LOOKING -- IF THE NIH IS 7240 04:35:15,920 --> 04:35:18,600 SERIOUS ABOUT WORKFORCE 7241 04:35:18,600 --> 04:35:19,920 DEVELOPMENT, ABOUT EDUCATION OF 7242 04:35:19,920 --> 04:35:23,880 THE BROADER COMMUNITY, WE TALKED 7243 04:35:23,880 --> 04:35:25,120 ABOUT DISMIC. 7244 04:35:25,120 --> 04:35:27,480 HOW CAN THE NIH SUPPORT 7245 04:35:27,480 --> 04:35:29,040 ORGANIZATIONS FINANCIALLY SO 7246 04:35:29,040 --> 04:35:32,520 THAT THEY CAN OFFER SCHOLARSHIPS 7247 04:35:32,520 --> 04:35:35,840 AND FREE ATTENDANCE OR A YEAR 7248 04:35:35,840 --> 04:35:37,920 FREE MEMBERSHIP TO CLINICIANS 7249 04:35:37,920 --> 04:35:40,320 THAT HAVE AN INTEREST IN COMPLEX 7250 04:35:40,320 --> 04:35:41,400 CARE AND HAVEN'T SPECIALIZED IN 7251 04:35:41,400 --> 04:35:43,960 DOWN SYNDROME SPECIFICALLY. 7252 04:35:43,960 --> 04:35:46,080 OR YOUNG INVESTIGATORS WHO ARE 7253 04:35:46,080 --> 04:35:47,840 THINKING ABOUT THEIR RESEARCH 7254 04:35:47,840 --> 04:35:51,600 CAREER AND HAVEN'T YET DECIDED 7255 04:35:51,600 --> 04:35:52,560 WHERE TO LAND. 7256 04:35:52,560 --> 04:35:55,800 SO, HOW IT IS IMPLEMENTED, YOU 7257 04:35:55,800 --> 04:35:56,920 KNOW, SKY IS THE LIMIT WHETHER 7258 04:35:56,920 --> 04:36:00,400 IT COMES FROM NIH SPECIFICALLY 7259 04:36:00,400 --> 04:36:04,080 WITH GRANTS THAT DON'T EXPECT A 7260 04:36:04,080 --> 04:36:07,040 RESEARCH OUTCOME NECESSARILY, 7261 04:36:07,040 --> 04:36:09,760 BUT PERHAPS A COLLABORATION 7262 04:36:09,760 --> 04:36:12,880 OUTCOME OR A CREATION OF A 7263 04:36:12,880 --> 04:36:15,600 RESEARCH PARTICIPANT PIPELINE 7264 04:36:15,600 --> 04:36:18,000 TYPE OF THING. 7265 04:36:18,000 --> 04:36:18,720 THOSE ARE JUSTED SOME IDEAS. 7266 04:36:18,720 --> 04:36:20,480 OR PARTNERSHIP WITH OTHER 7267 04:36:20,480 --> 04:36:21,360 ORGANIZATIONS THAT MORE 7268 04:36:21,360 --> 04:36:22,520 SPECIFICALLY FUND THESE EFFORTS 7269 04:36:22,520 --> 04:36:24,560 AS WELL AS SUPPORTING THE 7270 04:36:24,560 --> 04:36:25,640 PROFESSIONAL ORGANIZATIONS. 7271 04:36:25,640 --> 04:36:28,480 I'M CURIOUS AS TO WHAT DR. BRIAN 7272 04:36:28,480 --> 04:36:29,760 CHICOINE THINKS ABOUT THIS 7273 04:36:29,760 --> 04:36:31,600 BECAUSE THAT WAS HIS BIG MESSAGE 7274 04:36:31,600 --> 04:36:33,720 TOO FROM WHAT I GOT FROM HIS 7275 04:36:33,720 --> 04:36:35,360 TALK WAS ALSO TAKE CARE OF THE 7276 04:36:35,360 --> 04:36:37,000 PATIENTS CLINICALLY AND THE 7277 04:36:37,000 --> 04:36:38,320 RESEARCH WILL FOLLOW. 7278 04:36:38,320 --> 04:36:41,760 >> BRIAN CHICOINE: I THINK THEY 7279 04:36:41,760 --> 04:36:42,400 HAVE TO BE INTERTWINED. 7280 04:36:42,400 --> 04:36:43,840 THEY CAN'T SIT IN SILOS. 7281 04:36:43,840 --> 04:36:46,280 WE HAVE TO PROVIDE HIGH-QUALITY 7282 04:36:46,280 --> 04:36:47,560 HEALTH CARE FOR THESE 7283 04:36:47,560 --> 04:36:48,880 INDIVIDUALS AND THEN WE NEED TO 7284 04:36:48,880 --> 04:36:52,000 RESEARCH THAT CARE SO IT'S EVEN 7285 04:36:52,000 --> 04:36:53,320 HIGHER QUALITY. 7286 04:36:53,320 --> 04:36:55,240 AND THE TWO HAVE TO GO 7287 04:36:55,240 --> 04:36:55,560 HAND-IN-HAND. 7288 04:36:55,560 --> 04:36:57,160 I DO NOT THINK PEOPLE ARE GOING 7289 04:36:57,160 --> 04:36:58,480 TO LINE UP FOR RESEARCH IF THEY 7290 04:36:58,480 --> 04:37:01,000 ARE NOT GETTING GOOD HEALTH 7291 04:37:01,000 --> 04:37:01,560 CARE. 7292 04:37:01,560 --> 04:37:02,320 AT LEAST IN MY EXPERIENCE. 7293 04:37:02,320 --> 04:37:06,400 THAT'S JUST NOT GOING TO HAPPEN. 7294 04:37:06,400 --> 04:37:08,000 >> AND I JUST WANT TO 7295 04:37:08,000 --> 04:37:10,200 ACKNOWLEDGE SOMETHING THAT WAS 7296 04:37:10,200 --> 04:37:12,560 SAID BECAUSE IF I'M 7297 04:37:12,560 --> 04:37:14,400 UNDERSTANDING CORRECTLY, I HAVE 7298 04:37:14,400 --> 04:37:16,520 BEEN APPROACHED BY THE PEDIATRIC 7299 04:37:16,520 --> 04:37:19,880 TRIALS NETWORK TO LOOK AT 7300 04:37:19,880 --> 04:37:20,480 METABOLISM OF MEDICATIONS, BUT 7301 04:37:20,480 --> 04:37:22,800 THE WAY IT WORKS WITHIN AN 7302 04:37:22,800 --> 04:37:24,480 INSTITUTION IS THAT YOU -- LIKE 7303 04:37:24,480 --> 04:37:27,680 THEY'LL GIVE YOU MONEY IF YOU 7304 04:37:27,680 --> 04:37:28,920 ENROLL THE PATIENT AFTERWARDS. 7305 04:37:28,920 --> 04:37:30,800 AND THAT'S NOT HOW INSTITUTIONS 7306 04:37:30,800 --> 04:37:31,000 WORK. 7307 04:37:31,000 --> 04:37:33,040 FIRST YOU HAVE TO SUBMIT THE 7308 04:37:33,040 --> 04:37:34,600 BUDGET AND PROVE THAT YOU'RE 7309 04:37:34,600 --> 04:37:36,160 GOING TO HAVE THE FUNDING BEFORE 7310 04:37:36,160 --> 04:37:40,040 YOU CAN DREAM OF HIRING A 7311 04:37:40,040 --> 04:37:40,960 RESEARCH COORDINATOR. 7312 04:37:40,960 --> 04:37:42,120 SO EVEN GETTING TO KNOW HOW THE 7313 04:37:42,120 --> 04:37:45,320 INSTITUTIONS WORK AND WHAT THEY 7314 04:37:45,320 --> 04:37:48,000 EXPECT TO THEN DESIGN HOW TO 7315 04:37:48,000 --> 04:37:49,320 SUPPORT THAT KIND OF RESEARCH 7316 04:37:49,320 --> 04:37:51,120 COORDINATOR IS KEY. 7317 04:37:51,120 --> 04:37:53,440 I WAS SO EXCITED ABOUT THE 7318 04:37:53,440 --> 04:37:55,120 POTENTIAL OF BEING A SITE FOR 7319 04:37:55,120 --> 04:37:57,400 THE PEDIATRIC TRIALS NETWORK BUT 7320 04:37:57,400 --> 04:38:00,040 BECAUSE I DON'T HAVE A EXISTING 7321 04:38:00,040 --> 04:38:01,680 RESEARCH COORDINATOR THAT I 7322 04:38:01,680 --> 04:38:05,160 COULD PROVIDE ADDITIONAL FUNDING 7323 04:38:05,160 --> 04:38:05,760 TO, IT WAS OUT OF THE QUESTION 7324 04:38:05,760 --> 04:38:08,640 FOR ME BECAUSE I COULDN'T GO TO 7325 04:38:08,640 --> 04:38:09,760 U-CSF WITH A MAYBE, POSSIBLY 7326 04:38:09,760 --> 04:38:11,560 THIS IS THE MONEY WE COULD GET 7327 04:38:11,560 --> 04:38:12,880 BUDGET. 7328 04:38:12,880 --> 04:38:13,640 WE NEED TO SAY I HAVE THIS 7329 04:38:13,640 --> 04:38:13,840 MONEY. 7330 04:38:13,840 --> 04:38:14,640 I NEED TO HIRE SOMEONE. 7331 04:38:14,640 --> 04:38:19,160 THAT'S HOW IT WORKS ON MY END. 7332 04:38:19,160 --> 04:38:20,920 >> THAT'S GREAT FEEDBACK 7333 04:38:20,920 --> 04:38:21,360 DR. NOEMI SPINAZZI. 7334 04:38:21,360 --> 04:38:22,040 THANK YOU. 7335 04:38:22,040 --> 04:38:24,920 SO I JUST WANTED TO HIGHLIGHT 7336 04:38:24,920 --> 04:38:27,440 THIS ONE QUESTION IN THE CHAT 7337 04:38:27,440 --> 04:38:28,000 FROM MARIA. 7338 04:38:28,000 --> 04:38:29,280 I'M NOT SURE WHO THAT QUESTION 7339 04:38:29,280 --> 04:38:30,760 IS DIRECTED TO. 7340 04:38:30,760 --> 04:38:34,720 BUT I'M JUST GOING TO ASK -- IT 7341 04:38:34,720 --> 04:38:38,400 ASKS, DO YOU HAVE OFFICE OR 7342 04:38:38,400 --> 04:38:41,520 COLLABORATION IN TEXAS? 7343 04:38:41,520 --> 04:38:43,560 MARIA, IF YOU COULD COME OFF 7344 04:38:43,560 --> 04:38:46,400 MUTE AND CLARIFY WHO THIS 7345 04:38:46,400 --> 04:38:56,640 QUESTION IS FOR. 7346 04:38:59,160 --> 04:39:01,080 >> I'M NOT SURE I UNDERSTAND THE 7347 04:39:01,080 --> 04:39:02,560 QUESTION COMPLETELY BUT I THINK 7348 04:39:02,560 --> 04:39:03,400 CERTAINLY TOW GET SERVICES IN 7349 04:39:03,400 --> 04:39:05,840 TEXAS, I WOULD ENCOURAGE THE 7350 04:39:05,840 --> 04:39:06,480 GLOBAL DOWN SYNDROME FOUNDATION 7351 04:39:06,480 --> 04:39:09,320 HAS A LIST OF ORGANIZATIONS OR A 7352 04:39:09,320 --> 04:39:10,600 LIST OF CLINICS ACROSS THE 7353 04:39:10,600 --> 04:39:11,840 COUNTRY AND I KNOW THERE ARE 7354 04:39:11,840 --> 04:39:15,360 SOME IN TEXAS. 7355 04:39:15,360 --> 04:39:20,040 AND I'M PRETTY SURE -- KATE DOES 7356 04:39:20,040 --> 04:39:22,800 NDSC HAVE THAT AS WELL OR NDSS 7357 04:39:22,800 --> 04:39:25,080 THAT HAS THAT LIST ON THE SITE? 7358 04:39:25,080 --> 04:39:27,800 I THINK YOU'RE MUTED, KATE. 7359 04:39:27,800 --> 04:39:29,320 >> I BELIEVE BOTH OF US ACTUALLY 7360 04:39:29,320 --> 04:39:29,520 DO. 7361 04:39:29,520 --> 04:39:29,800 >> OKAY. 7362 04:39:29,800 --> 04:39:32,200 >> BUT I KNOW NDSC HAS IT. 7363 04:39:32,200 --> 04:39:35,080 >> SO YOU GO TO THOSE SITES TO 7364 04:39:35,080 --> 04:39:39,480 LOOK FOR PROVIDERS. 7365 04:39:39,480 --> 04:39:39,720 >> OKAY. 7366 04:39:39,720 --> 04:39:40,960 SO JUST ASKING ONE MORE TIME, 7367 04:39:40,960 --> 04:39:42,960 ARE THERE ANY QUESTIONS FROM THE 7368 04:39:42,960 --> 04:39:46,160 SPANISH ROOM? 7369 04:39:46,160 --> 04:39:50,800 PEOPLE FROM THE BREAKOUT ROOM? 7370 04:39:50,800 --> 04:39:55,000 IF NOT, WE WILL, DR. STINSON, WE 7371 04:39:55,000 --> 04:39:57,320 CAN GO TO THE CLOSING. 7372 04:39:57,320 --> 04:39:58,720 >> NATHAN STINSON: UNFORTUNATELY 7373 04:39:58,720 --> 04:40:01,240 WE ARE COMING TO THE END OF THIS 7374 04:40:01,240 --> 04:40:03,520 WORKSHOP. 7375 04:40:03,520 --> 04:40:05,760 IT'S BEEN A TREMENDOUS TWO DAYS 7376 04:40:05,760 --> 04:40:08,040 AND I THANK ALL OF THE 7377 04:40:08,040 --> 04:40:11,640 PRESENTERS AND ALL OF THE 7378 04:40:11,640 --> 04:40:14,200 PARTICIPANTS IN THIS. 7379 04:40:14,200 --> 04:40:15,520 IT'S BEEN A LEARNING EXPERIENCE 7380 04:40:15,520 --> 04:40:20,440 FOR ME, WHICH I ALWAYS LIKE TO, 7381 04:40:20,440 --> 04:40:23,560 YOU KNOW, FEEL THAT WAY AT THE 7382 04:40:23,560 --> 04:40:25,320 END OF A CONFERENCE. 7383 04:40:25,320 --> 04:40:30,320 I REALLY HAVE THE PLEASURE AND 7384 04:40:30,320 --> 04:40:33,920 HONOR TO INTRODUCE DR. MELISSA 7385 04:40:33,920 --> 04:40:35,280 PARISI, THE CHIEF OF THE 7386 04:40:35,280 --> 04:40:37,760 INTELLECTUAL AND DEVELOPMENTAL 7387 04:40:37,760 --> 04:40:39,880 DISABILITIES BRANCH AT THE 7388 04:40:39,880 --> 04:40:41,640 EUNICE KENNEDY SHRIVER NATIONAL 7389 04:40:41,640 --> 04:40:43,840 INSTITUTE OF CHILD HEALTH AND 7390 04:40:43,840 --> 04:40:48,920 HUMAN DEVELOPMENT AT NIH. 7391 04:40:48,920 --> 04:40:51,640 DR. PARISI HAS AN M.D., PH.D. 7392 04:40:51,640 --> 04:40:52,640 FROM STANFORD UNIVERSITY. 7393 04:40:52,640 --> 04:40:54,760 SHE ALSO CHAIRS THE DOWN 7394 04:40:54,760 --> 04:40:57,680 SYNDROME CONSORTIUM WHICH IS A 7395 04:40:57,680 --> 04:40:59,800 PUBLIC-PRIVATE PARTNERSHIP TO 7396 04:40:59,800 --> 04:41:01,880 FACILITATE RESEARCH 7397 04:41:01,880 --> 04:41:02,320 COLLABORATIONS. 7398 04:41:02,320 --> 04:41:05,320 QUITE FRANKLY, SHE IS THE 7399 04:41:05,320 --> 04:41:08,200 INSPIRATIONAL LEADER AND THE 7400 04:41:08,200 --> 04:41:10,440 SOUL OF NIH'S INCLUDE 7401 04:41:10,440 --> 04:41:13,000 INITIATIVE, WHICH IS 7402 04:41:13,000 --> 04:41:15,960 INVESTIGATION OF CO-OCCURRING 7403 04:41:15,960 --> 04:41:19,000 CONDITIONS ACROSS THE LIFESPAN 7404 04:41:19,000 --> 04:41:21,320 TO UNDERSTAND DOWN SYNDROME. 7405 04:41:21,320 --> 04:41:23,720 DR. PARISI, PLEASE GIVE CLOSING 7406 04:41:23,720 --> 04:41:23,960 REMARKS. 7407 04:41:23,960 --> 04:41:27,320 >> MELISSA PARISI: THANK YOU, SO 7408 04:41:27,320 --> 04:41:29,160 MUCH, DR. STINSON FOR THAT 7409 04:41:29,160 --> 04:41:29,920 WELCOME AND INTRODUCTION. 7410 04:41:29,920 --> 04:41:32,600 YOU'RE FAR TOO KIND AND I THINK 7411 04:41:32,600 --> 04:41:34,560 REALLY THE THANKS NEEDS TO GO TO 7412 04:41:34,560 --> 04:41:36,960 ALL OF OUR EXCELLENT AND 7413 04:41:36,960 --> 04:41:38,560 BRILLIANT PRESENTERS FOR THIS 7414 04:41:38,560 --> 04:41:40,040 WORKSHOP OVER THE PAST TWO DAYS 7415 04:41:40,040 --> 04:41:43,320 AND FOR THE TEAM THAT HAS PULT 7416 04:41:43,320 --> 04:41:47,360 THIS TOGETHER AND EXHIBITED A 7417 04:41:47,360 --> 04:41:49,560 LOT OF BLOOD SWEAT AND TEARS IN 7418 04:41:49,560 --> 04:41:51,240 ORDER TO MAKE IT HAPPEN. 7419 04:41:51,240 --> 04:41:55,000 -- AM I SHARING MY SLIDES? 7420 04:41:55,000 --> 04:41:55,120 -- 7421 04:41:55,120 --> 04:41:56,640 >> THERE IS AN ECHO. 7422 04:41:56,640 --> 04:41:58,880 MAYBE YOUR TEAM'S MICROPHONE 7423 04:41:58,880 --> 04:42:00,880 NEEDS TO BE MUTED? 7424 04:42:00,880 --> 04:42:05,200 >> I CAN DO THAT. 7425 04:42:05,200 --> 04:42:05,800 >> US AND REMINDER TO GO A 7426 04:42:05,800 --> 04:42:09,000 LITTLE BIT SLOWER FOR THE 7427 04:42:09,000 --> 04:42:09,600 INTERPRETER -- AND ALSO REMIND 7428 04:42:09,600 --> 04:42:11,200 TO GO SLOWER FOR THE 7429 04:42:11,200 --> 04:42:11,760 INTERPRETER. 7430 04:42:11,760 --> 04:42:22,200 >> CAN YOU TEST IT NOW? 7431 04:42:22,800 --> 04:42:24,200 >> IF YOUR TEAMS IS OPEN, THERE 7432 04:42:24,200 --> 04:42:27,880 IS A MICROPHONE BUTTON. 7433 04:42:27,880 --> 04:42:28,520 >> I HAVE GOTTEN RID OF TEAMS 7434 04:42:28,520 --> 04:42:28,680 NOW. 7435 04:42:28,680 --> 04:42:29,280 I THINK THAT WAS PART OF THE 7436 04:42:29,280 --> 04:42:29,720 PROBLEM. 7437 04:42:29,720 --> 04:42:30,760 CAN YOU HEAR ME NOW? 7438 04:42:30,760 --> 04:42:31,320 >> THIS IS GOOD. 7439 04:42:31,320 --> 04:42:33,160 THANK YOU. 7440 04:42:33,160 --> 04:42:33,560 >> THANK YOU. 7441 04:42:33,560 --> 04:42:35,040 AND DO YOU WANT ME TO SHARE MY 7442 04:42:35,040 --> 04:42:35,320 SLIDES? 7443 04:42:35,320 --> 04:42:37,040 OR IS SOMEBODY ELSE KEYING THEM 7444 04:42:37,040 --> 04:42:37,440 UP? 7445 04:42:37,440 --> 04:42:40,160 >> YOU CAN SHARE YOUR SCREEN. 7446 04:42:40,160 --> 04:42:40,800 >> OKAY. 7447 04:42:40,800 --> 04:42:41,440 GIVENY JUST A MOMENT AND I WILL 7448 04:42:41,440 --> 04:42:51,600 DO THAT. 7449 04:42:59,280 --> 04:43:00,880 ALL RIGHT, THERE IS A REALLY 7450 04:43:00,880 --> 04:43:06,440 DAUNTING TASK TO TRY TO 7451 04:43:06,440 --> 04:43:10,080 SUMMARIZE THE LAST TWO DAY'S 7452 04:43:10,080 --> 04:43:10,520 WORTH OF A WORKSHOP. 7453 04:43:10,520 --> 04:43:11,360 BUT I'M GOING TO DO MY BEST AND 7454 04:43:11,360 --> 04:43:13,320 I APOLOGIZE IN ADVANCE FOR THE 7455 04:43:13,320 --> 04:43:15,480 FACT THAT I'M SUMMARIZING SOME 7456 04:43:15,480 --> 04:43:18,200 OF YOUR PRESENTATIONS INTO ONE 7457 04:43:18,200 --> 04:43:18,720 SLIDE OR LESS. 7458 04:43:18,720 --> 04:43:21,280 SO MY APOLOGIES BUT WE'LL DO OUR 7459 04:43:21,280 --> 04:43:21,960 BEST HERE. 7460 04:43:21,960 --> 04:43:26,000 SO I THINK IN TERMS OF SETTING 7461 04:43:26,000 --> 04:43:30,280 THE STAGE, AS DR. BARDA DID A 7462 04:43:30,280 --> 04:43:33,480 FANTASTIC JOB OF DESCRIBING THE 7463 04:43:33,480 --> 04:43:34,040 INCLUDE RESEARCH PROJECT AND 7464 04:43:34,040 --> 04:43:35,760 DEMONSTRATING HOW THIS NEW 7465 04:43:35,760 --> 04:43:37,320 FUNDING SUPPORT FOR DOWN 7466 04:43:37,320 --> 04:43:40,800 SYNDROME RESEARCH CAN REALLY 7467 04:43:40,800 --> 04:43:41,440 GALVANIZE RESEARCH IN THE THREE 7468 04:43:41,440 --> 04:43:42,960 COMPONENTS THAT ARE A PART OF 7469 04:43:42,960 --> 04:43:43,560 INCLUDE. 7470 04:43:43,560 --> 04:43:46,080 SO WE ARE LOOKING AT BASIC 7471 04:43:46,080 --> 04:43:48,680 SCIENCE, COHORT DEVELOPMENT AND 7472 04:43:48,680 --> 04:43:50,480 CLINICAL TRIALS. 7473 04:43:50,480 --> 04:43:54,040 AND WE ARE ON TRACK TO AWARD 75 7474 04:43:54,040 --> 04:43:56,400 MILLION DOLLARS IN FISCAL YEAR 7475 04:43:56,400 --> 04:43:58,480 2022 ALONE FOR THE INCLUDE 7476 04:43:58,480 --> 04:43:59,880 RESEARCH PROJECT. 7477 04:43:59,880 --> 04:44:01,800 THE HOPE THEN IS THAT WE CAN 7478 04:44:01,800 --> 04:44:03,680 ADDRESS SOME OF THESE REALLY 7479 04:44:03,680 --> 04:44:05,360 SIGNIFICANT DISPARITIES WHICH 7480 04:44:05,360 --> 04:44:07,720 ARE ILLUSTRATED IN THE TOP RIGHT 7481 04:44:07,720 --> 04:44:09,680 OF THIS SLIDE IN THAT THE LIFE 7482 04:44:09,680 --> 04:44:12,000 EXPECTANCY FOR PEOPLE WITH DOWN 7483 04:44:12,000 --> 04:44:14,760 SYNDROME IS WIDELY DIVERGENT 7484 04:44:14,760 --> 04:44:17,280 DEPENDING ON RACE AND ETHNICITY. 7485 04:44:17,280 --> 04:44:18,840 AND THAT IS A REAL PROBLEM AND 7486 04:44:18,840 --> 04:44:20,800 THAT IS SOMETHING THAT WE 7487 04:44:20,800 --> 04:44:24,520 ABSOLUTELY HAVE TO ADDRESS 7488 04:44:24,520 --> 04:44:25,200 THROUGH THIS PROGRAM. 7489 04:44:25,200 --> 04:44:28,240 SO, AS PART OF OUR BASIC 7490 04:44:28,240 --> 04:44:32,640 INFORMATION AND WORKSHOP 7491 04:44:32,640 --> 04:44:33,160 INTRODUCTORY COMMENTS, WE 7492 04:44:33,160 --> 04:44:34,560 REVIEWED THE REALLY RICH 7493 04:44:34,560 --> 04:44:35,280 DISCUSSIONS FROM THE LISTENING 7494 04:44:35,280 --> 04:44:37,280 SESSIONS THAT WERE HOSTED AND 7495 04:44:37,280 --> 04:44:42,920 THANKS TO LINDA GARCIA AND 7496 04:44:42,920 --> 04:44:44,520 OTHERS, WE HEARD ABOUT SOME OF 7497 04:44:44,520 --> 04:44:46,160 THE FEEDBACK FROM FAMILY MEMBERS 7498 04:44:46,160 --> 04:44:47,680 AND THEIR LISTENING SESSION AS 7499 04:44:47,680 --> 04:44:49,240 WELL AS RESEARCHERS ON THE RIGHT 7500 04:44:49,240 --> 04:44:50,720 SIDE OF THIS SLIDE. 7501 04:44:50,720 --> 04:44:52,000 AND WHAT I THINK YOU'LL NOTE 7502 04:44:52,000 --> 04:44:54,200 THAT IS REALLY IMPORTANT IS THAT 7503 04:44:54,200 --> 04:44:56,800 A LOT OF THE BARRIERS FOR 7504 04:44:56,800 --> 04:44:58,680 PARTICIPATION IN RESEARCH ARE 7505 04:44:58,680 --> 04:45:00,040 SHARED BY BOTH GROUPS. 7506 04:45:00,040 --> 04:45:03,440 TRUST IS A REALLY IMPORTANT 7507 04:45:03,440 --> 04:45:06,280 ELEMENT FOR BOTH OF THEM. 7508 04:45:06,280 --> 04:45:08,080 AND TIME IS ALSO ANOTHER 7509 04:45:08,080 --> 04:45:10,400 SIGNIFICANT BARRIER. 7510 04:45:10,400 --> 04:45:12,960 EDUCATION, LANGUAGE, SUPPORT FOR 7511 04:45:12,960 --> 04:45:13,560 FAMILIES, ALL OF THESE THINGS 7512 04:45:13,560 --> 04:45:17,160 THAT YOU ALL HAVE SO ELOQUENTLY 7513 04:45:17,160 --> 04:45:20,560 DESCRIBED IN THE LAST TWO DAYS 7514 04:45:20,560 --> 04:45:22,720 ARE ENCOMPASSED WITHIN BOTH OF 7515 04:45:22,720 --> 04:45:24,680 THESE WORD CLOUDS. 7516 04:45:24,680 --> 04:45:31,720 IN SESSION 1, WE HEARD ABOUT THE 7517 04:45:31,720 --> 04:45:34,080 COMMUNITY ENGAGEMENT ALLIANCE 7518 04:45:34,080 --> 04:45:34,640 CONSTITUTIVE RESOURCE. 7519 04:45:34,640 --> 04:45:38,080 THIS WAS, I THINK, A REALLY GOOD 7520 04:45:38,080 --> 04:45:40,080 INTRODUCTION TO SOME OF THE 7521 04:45:40,080 --> 04:45:42,800 RESOURCES THAT ARE NOW AVAILABLE 7522 04:45:42,800 --> 04:45:44,920 FOR DOWN SYNDROME RESEARCH. 7523 04:45:44,920 --> 04:45:46,760 AND WHAT IS IMPORTANT IS THAT 7524 04:45:46,760 --> 04:45:49,720 THE PROCESS FOR CONSULTATION, 7525 04:45:49,720 --> 04:45:51,200 FOR COMMUNITY ENGAGEMENT, CAN BE 7526 04:45:51,200 --> 04:45:53,320 DONE WITHIN 30-60 DAYS. 7527 04:45:53,320 --> 04:45:56,520 AND WE HOPE THAT MANY OF OUR 7528 04:45:56,520 --> 04:45:57,320 INVESTIGATORS WILL TAKE 7529 04:45:57,320 --> 04:46:02,120 ADVANTAGE OF THESE RESOURCES, 7530 04:46:02,120 --> 04:46:04,040 PARTICULARLY SINCE THEY WERE 7531 04:46:04,040 --> 04:46:05,200 DEVELOPED BECAUSE OF SOME OF THE 7532 04:46:05,200 --> 04:46:08,040 COVID-RELATED NEEDS OF 7533 04:46:08,040 --> 04:46:10,120 INCREASING REPRESENTATION IN OUR 7534 04:46:10,120 --> 04:46:11,240 COVID-RELATED RESEARCH STUDIES. 7535 04:46:11,240 --> 04:46:12,480 AND THERE IS NO REASON TO 7536 04:46:12,480 --> 04:46:15,040 REINVENT THE WHEEL IF SOME OF 7537 04:46:15,040 --> 04:46:16,880 THOSE PROCESSES CAN ALSO WORK 7538 04:46:16,880 --> 04:46:21,240 FOR OUR DOWN SYNDROME COMMUNITY. 7539 04:46:21,240 --> 04:46:22,640 SESSION 2, AND I DON'T HAVE A 7540 04:46:22,640 --> 04:46:24,000 CHANCE TO THANK ALL OF THE 7541 04:46:24,000 --> 04:46:29,560 STAKEHOLDERS WHO PARTICIPATED IN 7542 04:46:29,560 --> 04:46:33,320 THIS VERY VALUABLE PERSPECTIVE 7543 04:46:33,320 --> 04:46:35,720 GAINING FROM FAMILIES AND SELF 7544 04:46:35,720 --> 04:46:37,000 ADVOCATES AS WELL AS 7545 04:46:37,000 --> 04:46:37,280 RESEARCHERS. 7546 04:46:37,280 --> 04:46:40,640 AND I DECIDED TO COMBINE THEIR 7547 04:46:40,640 --> 04:46:43,160 RESPONSES INTO ONE. 7548 04:46:43,160 --> 04:46:45,040 AGAIN, BECAUSE THERE WAS SO MUCH 7549 04:46:45,040 --> 04:46:45,280 OVERLAP. 7550 04:46:45,280 --> 04:46:48,760 AND I THINK CONSENSUS AROUND 7551 04:46:48,760 --> 04:46:49,480 SOME OF THE IMPORTANT ASPECTS OF 7552 04:46:49,480 --> 04:46:51,200 THOSE PERSPECTIVES. 7553 04:46:51,200 --> 04:46:53,680 MANY WHO HAVE PARTICIPATED IN 7554 04:46:53,680 --> 04:46:56,920 RESEARCH HAVE FOUND THEM TO BE 7555 04:46:56,920 --> 04:46:58,000 POSITIVE EXPERIENCES; HOWEVER, 7556 04:46:58,000 --> 04:46:59,520 THERE IS A LACK OF ACCESS, 7557 04:46:59,520 --> 04:47:02,160 PARTICULARLY IN RURAL AND 7558 04:47:02,160 --> 04:47:03,960 UNDERSERVED AREAS. 7559 04:47:03,960 --> 04:47:05,320 IT'S REALLY IMPORTANT THAT 7560 04:47:05,320 --> 04:47:07,120 RESEARCHERS ENGAGE DIRECTLY WITH 7561 04:47:07,120 --> 04:47:07,800 THE PARTICIPANT NOT JUST WITH 7562 04:47:07,800 --> 04:47:12,160 THE CAREGIVERS OR PARENTS. 7563 04:47:12,160 --> 04:47:14,480 COLLABORATIVE RESEARCH MODEL IS 7564 04:47:14,480 --> 04:47:15,040 ESSENTIAL. 7565 04:47:15,040 --> 04:47:16,120 PARTNERING WITH THE COMMUNITY 7566 04:47:16,120 --> 04:47:19,360 RATHER THAN DOING RESEARCH ON 7567 04:47:19,360 --> 04:47:19,680 INDIVIDUALS. 7568 04:47:19,680 --> 04:47:21,280 WE HEARD TIME AND TIME AGAIN 7569 04:47:21,280 --> 04:47:23,120 ABOUT THE IMPORTANCE OF CLEAR 7570 04:47:23,120 --> 04:47:24,680 COMMUNICATION AND THAT IF MUST 7571 04:47:24,680 --> 04:47:27,960 BE CULTURALLY SENSITIVE, MUST BE 7572 04:47:27,960 --> 04:47:29,520 TRANSLATED AND ACCESSIBLE BY THE 7573 04:47:29,520 --> 04:47:30,760 INDIVIDUALS WHO ARE UTILIZING 7574 04:47:30,760 --> 04:47:31,840 THOSE. 7575 04:47:31,840 --> 04:47:34,040 WE ALSO RECOGNIZE THE NEED TO 7576 04:47:34,040 --> 04:47:36,200 ACCOMMODATE FAMILIES BUSY LIVES 7577 04:47:36,200 --> 04:47:38,560 THROUGH A VARIETY OF MECHANISMS 7578 04:47:38,560 --> 04:47:40,920 AND INCLUDING COMPENSATION BUT 7579 04:47:40,920 --> 04:47:44,200 THEN WE ALSO HEARD ABOUT 7580 04:47:44,200 --> 04:47:45,320 CONCERNS ABOUT TAX LIABILITIES 7581 04:47:45,320 --> 04:47:48,920 AND A LOSS OF BENEFITS IF THAT 7582 04:47:48,920 --> 04:47:49,400 COMPENSATION EXCEEDS A 7583 04:47:49,400 --> 04:47:49,760 PARTICULAR CAP. 7584 04:47:49,760 --> 04:47:50,640 AND THAT IS SOMETHING THAT IS A 7585 04:47:50,640 --> 04:47:54,200 REAL ISSUE FOR OUR COMMUNITY AS 7586 04:47:54,200 --> 04:47:54,480 WELL. 7587 04:47:54,480 --> 04:47:55,680 IT'S IMPORTANT TO HAVE MEMBERS 7588 04:47:55,680 --> 04:47:57,880 OF THE CLINICAL STUDY TEAM AND 7589 04:47:57,880 --> 04:47:59,400 RESEARCHERS WHO LOOK LIKE THE 7590 04:47:59,400 --> 04:48:01,520 PARTICIPANTS THEY ARE TRYING TO 7591 04:48:01,520 --> 04:48:01,760 RECRUIT. 7592 04:48:01,760 --> 04:48:04,040 THERE NEEDS TO BE SUSTAINED 7593 04:48:04,040 --> 04:48:04,360 RELATIONSHIPS. 7594 04:48:04,360 --> 04:48:07,000 WE NEED TO SUPPORT THE CLINICAL 7595 04:48:07,000 --> 04:48:08,160 PROGRAM THAT IS SUPPORT THE 7596 04:48:08,160 --> 04:48:10,440 PATIENT AND FAMILY AND THIS JUST 7597 04:48:10,440 --> 04:48:12,520 CAME UP BRILLIANTLY IN THE VERY 7598 04:48:12,520 --> 04:48:14,080 LAST SESSION WE HEARD FROM 7599 04:48:14,080 --> 04:48:18,400 DR. NOEMI SPINAZZI AND FROM 7600 04:48:18,400 --> 04:48:20,560 DR. BRIAN CHICOINE AND ELENA 7601 04:48:20,560 --> 04:48:21,480 GRIGORENKO AND KATE DOUGHERTY 7602 04:48:21,480 --> 04:48:23,000 ABOUT THIS AS WELL. 7603 04:48:23,000 --> 04:48:23,840 AND THEN ASKING FAMILIES WHAT 7604 04:48:23,840 --> 04:48:24,840 ARE THE MOST IMPORTANT ISSUES 7605 04:48:24,840 --> 04:48:26,360 FOR THEM AND NOT ASSUMING FROM 7606 04:48:26,360 --> 04:48:28,440 OUR CULTURAL SPER EFFECTIVE THAT 7607 04:48:28,440 --> 04:48:29,960 WE KNOW WHAT IS IMPORTANT -- 7608 04:48:29,960 --> 04:48:30,320 PERSPECTIVE. 7609 04:48:30,320 --> 04:48:33,320 THE IMPORTANCE OF COMMUNITY 7610 04:48:33,320 --> 04:48:35,280 EFFORTS, CHURCHES, LOCAL, DOWN 7611 04:48:35,280 --> 04:48:37,040 SYNDROME AND OTHER 7612 04:48:37,040 --> 04:48:38,440 ORGANIZATIONS, HEALTH CARE 7613 04:48:38,440 --> 04:48:39,160 PROVIDERS AND OTHERS. 7614 04:48:39,160 --> 04:48:41,280 I HEARD LOUD AND CLEAR THAT WE 7615 04:48:41,280 --> 04:48:43,600 NEED TO MAKE SURE TO TAKE CARE 7616 04:48:43,600 --> 04:48:46,040 OF THE MOTHERS IN THE COMMUNITY 7617 04:48:46,040 --> 04:48:47,960 BECAUSE THEY ARE OFTENTIMES THE 7618 04:48:47,960 --> 04:48:48,600 ONES WHO ARE PROVIDING THE CARE 7619 04:48:48,600 --> 04:48:51,000 AND BRINGING THEIR CHILDREN AND 7620 04:48:51,000 --> 04:48:53,280 LOVED ONES TO THEIR VISITS, 7621 04:48:53,280 --> 04:48:54,960 CLINIC VISITS AND RESEARCH 7622 04:48:54,960 --> 04:48:55,400 VISITS. 7623 04:48:55,400 --> 04:48:57,280 AND THEN TAKING THOSE RESEARCH 7624 04:48:57,280 --> 04:48:58,960 FINDINGS AND GIVING THEM BACK TO 7625 04:48:58,960 --> 04:49:01,360 THE COMMUNITY AND TRANSLATING 7626 04:49:01,360 --> 04:49:03,280 THEM INTO AVAILABLE RESOURCES 7627 04:49:03,280 --> 04:49:04,840 THAT ARE THEN AVAILABLE FOR 7628 04:49:04,840 --> 04:49:06,840 THOSE INDIVIDUALS WHO 7629 04:49:06,840 --> 04:49:07,640 PARTICIPATED IN THE RESEARCH. 7630 04:49:07,640 --> 04:49:09,600 SO THOSE WERE MY TAKEAWAYS FROM 7631 04:49:09,600 --> 04:49:11,480 THE STAKEHOLDER'S PERSPECTIVES. 7632 04:49:11,480 --> 04:49:13,320 I HAVE A COUPLE OF HIGHLIGHTS 7633 04:49:13,320 --> 04:49:15,800 FROM EACH OF THE PRESENTATIONS. 7634 04:49:15,800 --> 04:49:17,040 I'M GOING TO DO A VERY 7635 04:49:17,040 --> 04:49:21,120 HIGH-LEVEL VIEW HERE AND NOT GO 7636 04:49:21,120 --> 04:49:21,400 INTO DEPTH. 7637 04:49:21,400 --> 04:49:22,000 THESE SLIDES WILL BE AVAILABLE 7638 04:49:22,000 --> 04:49:23,800 IF YOU WANT TO LOOK AT THEM IN 7639 04:49:23,800 --> 04:49:28,280 THE FUTURE AND DIGEST THEM IN 7640 04:49:28,280 --> 04:49:28,640 GREATER DETAIL. 7641 04:49:28,640 --> 04:49:29,320 WE LEARNED FIRST OF ALL IN 7642 04:49:29,320 --> 04:49:34,280 SESSION 3 FROM DR. CORBETT ABOUT 7643 04:49:34,280 --> 04:49:35,480 THE IMPORTANCE OF INCLUSION 7644 04:49:35,480 --> 04:49:37,480 ACROSS ALL OF NIH RESEARCH. 7645 04:49:37,480 --> 04:49:40,320 WE LEARNED ABOUT INCLUSION 7646 04:49:40,320 --> 04:49:41,640 ACROSS THE LIFESPAN AS WELL AS 7647 04:49:41,640 --> 04:49:44,320 INCLUSION THAT IMPROVES 7648 04:49:44,320 --> 04:49:47,520 REPRESENTATION OF WOMEN AND 7649 04:49:47,520 --> 04:49:48,280 UNDERREPRESENTED GROUPS. 7650 04:49:48,280 --> 04:49:51,560 AND THAT THESE DATA, THE 7651 04:49:51,560 --> 04:49:53,320 INDIVIDUAL-LEVEL PARTICIPANT 7652 04:49:53,320 --> 04:49:54,640 DATA ARE COLLECTED FROM EVERY 7653 04:49:54,640 --> 04:50:00,160 SINGLE NIH-FUNDED STUDY THAT IS 7654 04:50:00,160 --> 04:50:00,680 ENROLLING HUMAN SUBJECTS. 7655 04:50:00,680 --> 04:50:02,480 SO THAT'S REALLY KEY AND VERY 7656 04:50:02,480 --> 04:50:03,840 IMPORTANT. 7657 04:50:03,840 --> 04:50:05,640 IN SESSION 3, WE ALSO HEARD FROM 7658 04:50:05,640 --> 04:50:07,720 TRACY ROSSER ABOUT THE CRITICAL 7659 04:50:07,720 --> 04:50:10,880 IMPORTANCE OF DIVERSITY IN DOWN 7660 04:50:10,880 --> 04:50:12,320 SYNDROME RESEARCH AND SOME 7661 04:50:12,320 --> 04:50:13,640 MODELS FROM THE ALL OF US 7662 04:50:13,640 --> 04:50:15,160 RESEARCH PROGRAM. 7663 04:50:15,160 --> 04:50:17,120 AND I THINK DR. ROSSER DID A 7664 04:50:17,120 --> 04:50:20,160 GREAT JOB OF DESCRIBING 7665 04:50:20,160 --> 04:50:21,640 DIFFERENCES IN MEDICAL OUTCOMES 7666 04:50:21,640 --> 04:50:25,040 FOR DIFFERENT RACIAL AND ETHNIC 7667 04:50:25,040 --> 04:50:26,040 GROUPS WITH TOO HARD SOME 7668 04:50:26,040 --> 04:50:29,280 SPECIFIC CO-OCCURRING CONDITIONS 7669 04:50:29,280 --> 04:50:30,680 IN DOWN SYNDROME. 7670 04:50:30,680 --> 04:50:33,280 -- SHE PROVIDED A FRAMEWORK 7671 04:50:33,280 --> 04:50:35,800 ABOUT INCREASING PARTICIPATION 7672 04:50:35,800 --> 04:50:37,280 AND DIVERSITY AND SHARED 7673 04:50:37,280 --> 04:50:38,160 RESOURCES AND STRATEGIES THAT 7674 04:50:38,160 --> 04:50:42,120 HAD BEEN USED BY THE ALL OF US 7675 04:50:42,120 --> 04:50:42,840 RESEARCH PROGRAM THAT IS 7676 04:50:42,840 --> 04:50:45,280 ADDRESSING SOME OF THESE NEEDS 7677 04:50:45,280 --> 04:50:49,200 AS WELL. 7678 04:50:49,200 --> 04:50:52,880 SO, DR. KELLY AND MILLER ALSO 7679 04:50:52,880 --> 04:50:55,320 DESCRIBED SOME SPECIFIC EXAMPLES 7680 04:50:55,320 --> 04:50:56,920 FROM THEIR RESEARCH WITH THE 7681 04:50:56,920 --> 04:50:58,120 FUNDAMENTAL QUESTION OF MAKING 7682 04:50:58,120 --> 04:50:59,840 SLEEP STUDIES EASIER FOR 7683 04:50:59,840 --> 04:51:00,920 FAMILIES WITH DOWN SYNDROME AND 7684 04:51:00,920 --> 04:51:04,520 IS THERE AN OPPORTUNITY TO 7685 04:51:04,520 --> 04:51:05,880 UTILIZE STORY BOARDS AND VIDEOS 7686 04:51:05,880 --> 04:51:09,440 TO FACILITATE THE CONSENT TO 7687 04:51:09,440 --> 04:51:09,680 PROCESS. 7688 04:51:09,680 --> 04:51:12,000 AND I THINK SOME OF THE QUOTES 7689 04:51:12,000 --> 04:51:14,480 THAT THEY SHARED WERE VERY 7690 04:51:14,480 --> 04:51:15,400 IMPACTFUL. 7691 04:51:15,400 --> 04:51:17,360 AND DR. MILLER TOLD US ABOUT HOW 7692 04:51:17,360 --> 04:51:20,000 WE COULD INVOLVE CHILDREN IN THE 7693 04:51:20,000 --> 04:51:20,720 DECISION-MAKING PROCESS BECAUSE 7694 04:51:20,720 --> 04:51:25,120 THIS IS REALLY UNDERSTUDIED FOR 7695 04:51:25,120 --> 04:51:27,280 THE DOWN SYNDROME POPULATION, 7696 04:51:27,280 --> 04:51:28,800 FOR POPULATIONS WITH 7697 04:51:28,800 --> 04:51:29,400 INTELLECTUAL DISABILITIES IN 7698 04:51:29,400 --> 04:51:29,640 GENERAL. 7699 04:51:29,640 --> 04:51:31,520 AND THE MODEL THAT WAS SHARED 7700 04:51:31,520 --> 04:51:34,200 WITH US WAS ONE ON 7701 04:51:34,200 --> 04:51:36,400 DECISION-MAKING INVOLVEMENT, 7702 04:51:36,400 --> 04:51:37,880 INVOLVING THAT CHILD, WHATEVER 7703 04:51:37,880 --> 04:51:41,280 STAGE IN DEVELOPMENTAL LEVEL AT 7704 04:51:41,280 --> 04:51:42,840 WHATEVER LEVEL IS APPROPRIATE IN 7705 04:51:42,840 --> 04:51:44,240 THE DISCUSSION ABOUT 7706 04:51:44,240 --> 04:51:49,120 PARTICIPATING IN RESEARCH. 7707 04:51:49,120 --> 04:51:51,760 WE TALKED FINALLY TO WRAP UP DAY 7708 04:51:51,760 --> 04:51:54,320 1, DR. BROWN TALKED ABOUT SLEEP, 7709 04:51:54,320 --> 04:51:56,320 HEALTH DISPARITIES IN DOWN 7710 04:51:56,320 --> 04:51:59,680 SYNDROME AND RECOGNIZING THAT 7711 04:51:59,680 --> 04:52:01,560 SLEEP DISORDER BREATHING IS 7712 04:52:01,560 --> 04:52:04,400 PERHAPS THE MOST REPORTED SLEEP 7713 04:52:04,400 --> 04:52:07,120 DISORDER IN PEOPLE WITH DOWN 7714 04:52:07,120 --> 04:52:09,200 SYNDROME AND IT'S EXACERBATED 7715 04:52:09,200 --> 04:52:09,800 FROM UNDERREPRESENTED GROUPS. 7716 04:52:09,800 --> 04:52:11,360 THE GOOD NEWS IS THAT THE NUMBER 7717 04:52:11,360 --> 04:52:13,200 OF PUBLICATIONS AROUND THIS 7718 04:52:13,200 --> 04:52:15,880 QUESTION ARE INCREASING. 7719 04:52:15,880 --> 04:52:18,840 THERE STILL REMAINS SIGNIFICANT 7720 04:52:18,840 --> 04:52:19,720 RESEARCH GAP THAT IS NEED TO BE 7721 04:52:19,720 --> 04:52:22,080 ADDRESSED SO THAT WE CAN FULLY 7722 04:52:22,080 --> 04:52:23,160 UNDERSTAND THIS PARTICULAR 7723 04:52:23,160 --> 04:52:24,840 CO-OCCURRING CONDITION AND ITS 7724 04:52:24,840 --> 04:52:28,280 IMPACT ON THE DOWN SYNDROME 7725 04:52:28,280 --> 04:52:28,560 POPULATION. 7726 04:52:28,560 --> 04:52:32,720 SO TODAY, WE OPENED OUR WORKSHOP 7727 04:52:32,720 --> 04:52:36,200 TALKING ABOUT ENSURING 7728 04:52:36,200 --> 04:52:36,840 REPRESENTATION IN THE DOWN 7729 04:52:36,840 --> 04:52:39,720 SYNDROME SCIENTIFIC WORKFORCE 7730 04:52:39,720 --> 04:52:40,360 AND REALLY WITH A FOCUS ON 7731 04:52:40,360 --> 04:52:44,320 INVESTIGATORS AND TRAINEES. 7732 04:52:44,320 --> 04:52:48,560 AND SO, DR. BARRED ENRI MINDED 7733 04:52:48,560 --> 04:52:50,840 EVERYBODY OF THE GOALS OF THE 7734 04:52:50,840 --> 04:52:53,960 INCLUDE EFFORT AND ONE OF OUR 7735 04:52:53,960 --> 04:52:54,480 CONGRESSIONALLY-MANDATED 7736 04:52:54,480 --> 04:52:56,040 DIRECTIVES IS TO EXPAND THE 7737 04:52:56,040 --> 04:52:58,880 PIPELINE OF NEW AND EARLY-STAGE 7738 04:52:58,880 --> 04:52:59,320 INVESTIGATORS. 7739 04:52:59,320 --> 04:53:02,680 WE HAVE SUPPORTED IN THE MANY 7740 04:53:02,680 --> 04:53:03,960 NEW PROJECTS UNDER INCLUDE, OVER 7741 04:53:03,960 --> 04:53:06,280 THIRT I TRAINEES AND WE ARE 7742 04:53:06,280 --> 04:53:08,200 WORKING TO INCREASE THE 7743 04:53:08,200 --> 04:53:10,160 DIVERSITY OF THOSE TRAINEES AS 7744 04:53:10,160 --> 04:53:10,800 WELL. 7745 04:53:10,800 --> 04:53:13,240 AND REMINDER TO ANY OF YOU WHO 7746 04:53:13,240 --> 04:53:14,960 ARE INVESTIGATORS IN THE DOWN 7747 04:53:14,960 --> 04:53:17,240 SYNDROME SPACE, OUR NEWEST 7748 04:53:17,240 --> 04:53:18,960 FUNDING OPPORTUNITY 7749 04:53:18,960 --> 04:53:19,760 ANNOUNCEMENTS HAVE AN EMPHASIS 7750 04:53:19,760 --> 04:53:22,200 ON ENCOURAGING DIVERSE 7751 04:53:22,200 --> 04:53:25,040 RECRUITMENT, THEY ALLOW FOREIGN 7752 04:53:25,040 --> 04:53:28,040 APPLICANTS AND THEY ENCOURAGE 7753 04:53:28,040 --> 04:53:29,680 THE DIVERSITY OF INVESTIGATORS 7754 04:53:29,680 --> 04:53:33,320 AS WELL AS SUBJECTS AS A 7755 04:53:33,320 --> 04:53:34,320 PRIORITY. 7756 04:53:34,320 --> 04:53:39,960 DR. LEI TALKED TO US ABOUT THE 7757 04:53:39,960 --> 04:53:42,000 CHIEF OFFICER FOR SCIENTIFIC 7758 04:53:42,000 --> 04:53:43,160 WORKFORCE DIVERSITY AT NIH AND 7759 04:53:43,160 --> 04:53:47,240 WHAT IT IS DOING TO HELP ENHANCE 7760 04:53:47,240 --> 04:53:50,000 OUR SCIENTIFIC WORKFORCE IN 7761 04:53:50,000 --> 04:53:51,600 GENERAL ACROSS NIH. 7762 04:53:51,600 --> 04:53:53,320 AND THE REAL IMPORTANCE OF 7763 04:53:53,320 --> 04:53:53,960 DIVERSE PERSPECTIVES. 7764 04:53:53,960 --> 04:53:56,560 AND I LOVE THIS IMAGE OF THE 7765 04:53:56,560 --> 04:53:59,280 ELEPHANT AND HOW DIVERSE 7766 04:53:59,280 --> 04:54:03,680 INDIVIDUALS ARE SEEING IT AND 7767 04:54:03,680 --> 04:54:04,280 EXPERIENCING DIFFERENT ASPECTS 7768 04:54:04,280 --> 04:54:04,760 OF THE MEDICAL PROBLEM. 7769 04:54:04,760 --> 04:54:06,480 SHE REMINDED US OF THE 7770 04:54:06,480 --> 04:54:07,000 IMPORTANCE OF RECRUITMENT, 7771 04:54:07,000 --> 04:54:08,800 DEVELOPMENT AND REWARDING OF 7772 04:54:08,800 --> 04:54:09,640 THOSE NEW FACULTY MEMBERS WHO 7773 04:54:09,640 --> 04:54:12,720 MAY BE RECRUITED AND RETENTION 7774 04:54:12,720 --> 04:54:14,840 OF DIVERSE FACULTY MEMBERS SO 7775 04:54:14,840 --> 04:54:18,360 THAT THEY STAY IN THE SCIENTIFIC 7776 04:54:18,360 --> 04:54:19,120 RESEARCH COMMUNITY. 7777 04:54:19,120 --> 04:54:20,760 AND THEN SOME VERY SPECIFIC 7778 04:54:20,760 --> 04:54:24,440 IDEAS ABOUT WAYS IN WHICH THERE 7779 04:54:24,440 --> 04:54:26,920 ARE RESOURCES TO HELP WITH 7780 04:54:26,920 --> 04:54:29,280 DIVERSE RECRUITMENT OF 7781 04:54:29,280 --> 04:54:31,520 INVESTIGATORS. 7782 04:54:31,520 --> 04:54:33,280 WE ALSO TALKED ABOUT, WHAT I 7783 04:54:33,280 --> 04:54:38,440 WOULD CALL, KIND OF A ROADMAP 7784 04:54:38,440 --> 04:54:39,120 FROM MICHELLE JONES-LONDON BASED 7785 04:54:39,120 --> 04:54:40,560 ON HER EXPERIENCE RUNNING 7786 04:54:40,560 --> 04:54:41,960 DIVERSITY PROGRAMS FOR 7787 04:54:41,960 --> 04:54:42,920 NEUROSCIENCE RESEARCHERS AND 7788 04:54:42,920 --> 04:54:45,640 THAT DIAGRAM IS FILLED WITH NIH 7789 04:54:45,640 --> 04:54:47,360 ACRONYMS AND I KNOW IT IS 7790 04:54:47,360 --> 04:54:49,200 OVERWHELMING FOR MOST OF YOU BUT 7791 04:54:49,200 --> 04:54:50,640 FOR THOSE OF US IN THE INCLUDE 7792 04:54:50,640 --> 04:54:52,960 PROGRAM, WE ARE THINKING, HOLY 7793 04:54:52,960 --> 04:54:55,920 MOLY, WE HAVE SO MUCH MORE WE 7794 04:54:55,920 --> 04:54:58,400 CAN DO TO HELP SUPPORT DIVERSE 7795 04:54:58,400 --> 04:54:59,960 RECRUITMENT INTO THE DOWN 7796 04:54:59,960 --> 04:55:00,480 SYNDROME RESEARCH SPACE. 7797 04:55:00,480 --> 04:55:02,680 AND I LOVE THIS QUOTE THAT SHE 7798 04:55:02,680 --> 04:55:05,120 PROVIDED ON HER FINAL SLIDE, 7799 04:55:05,120 --> 04:55:09,040 DIVERSITY IS NOT A PROBLEM, IT'S 7800 04:55:09,040 --> 04:55:09,560 THE SOLUTION. 7801 04:55:09,560 --> 04:55:11,800 DR. JIANHUA WU GAVE US A GREAT 7802 04:55:11,800 --> 04:55:14,800 PERSONAL PERSPECTIVE ON HIS 7803 04:55:14,800 --> 04:55:16,480 EXPERIENCES AS AN AWARD 7804 04:55:16,480 --> 04:55:18,800 WIN-WINNING RESEARCHER WHO 7805 04:55:18,800 --> 04:55:20,960 EMBRACES MENTORING DIVERSE 7806 04:55:20,960 --> 04:55:21,320 STUDENTS. 7807 04:55:21,320 --> 04:55:24,280 HE PROVIDED GREAT NUGGETS, 7808 04:55:24,280 --> 04:55:25,720 MUTUAL RESPECT, REALLY TRYING TO 7809 04:55:25,720 --> 04:55:28,040 HELP HIS STUDENTS REACH THEIR 7810 04:55:28,040 --> 04:55:30,480 DREAM CAREER GOALS. 7811 04:55:30,480 --> 04:55:31,920 AND EVEN IN INCLUDING AN 7812 04:55:31,920 --> 04:55:32,680 INTERNATIONAL OUTREACH COMPONENT 7813 04:55:32,680 --> 04:55:34,680 AND BOY I WOULD LOVE TO BE ONE 7814 04:55:34,680 --> 04:55:36,400 OF THOSE STUDENTS DR. JIANHUA WU 7815 04:55:36,400 --> 04:55:39,120 AND GET A CHANCE TO TRAVEL TO 7816 04:55:39,120 --> 04:55:42,800 CHINA WITH YOU FOR SOME OF YOUR 7817 04:55:42,800 --> 04:55:43,080 EXPERIENCES. 7818 04:55:43,080 --> 04:55:46,480 IN SESSION 5, WE HEARD FROM 7819 04:55:46,480 --> 04:55:49,320 DR. CAREY GLEASON TALKING ABOUT 7820 04:55:49,320 --> 04:55:51,360 ENHANCING PARTICIPANT DEARESTY 7821 04:55:51,360 --> 04:55:52,040 AND HER EXPERIENCES WORKING WITH 7822 04:55:52,040 --> 04:55:56,360 THE ONIDA DRY -- DIVERSITY -- IN 7823 04:55:56,360 --> 04:55:56,640 WISCONSIN. 7824 04:55:56,640 --> 04:55:58,160 SHE TOLD US OR EXPLAINED TO US 7825 04:55:58,160 --> 04:55:59,360 HOW IMPORTANT THE LANGUAGE THAT 7826 04:55:59,360 --> 04:56:01,360 WE USE IS. 7827 04:56:01,360 --> 04:56:06,280 AND USING UNDERREPRESENTED GROUP 7828 04:56:06,280 --> 04:56:06,920 RATHER THAN MINORITY, WHICH CAN 7829 04:56:06,920 --> 04:56:08,440 BE PEJORATIVE HAVE NEGATIVE 7830 04:56:08,440 --> 04:56:08,800 CONNOTATIONS. 7831 04:56:08,800 --> 04:56:11,320 THE VALUES THAT WE BRING TO THE 7832 04:56:11,320 --> 04:56:15,200 TABLE AS RESEARCHERS, AS 7833 04:56:15,200 --> 04:56:16,240 PARENTS, AS PARTICIPANTS, CAN BE 7834 04:56:16,240 --> 04:56:17,920 VERY DIFFERENT AND WHEN THOSE 7835 04:56:17,920 --> 04:56:19,680 VALUES ARE NOT NECESSARILY 7836 04:56:19,680 --> 04:56:21,160 ALIGNED, THERE IS THE POTENTIAL 7837 04:56:21,160 --> 04:56:25,320 FOR MISUNDERSTANDING. 7838 04:56:25,320 --> 04:56:28,160 SO, THE COMMUNITY-BASED 7839 04:56:28,160 --> 04:56:29,320 PARTICIPATORY RESEARCH 7840 04:56:29,320 --> 04:56:31,360 ENGAGEMENT FRAMEWORK -- THAT'S A 7841 04:56:31,360 --> 04:56:32,480 MOUTHFUL -- THAT FRAMEWORK SHE 7842 04:56:32,480 --> 04:56:35,120 SHARED WITH US IS REALLY 7843 04:56:35,120 --> 04:56:35,400 IMPORTANT. 7844 04:56:35,400 --> 04:56:38,960 GIVE FIRST, BUILD ADVOCATES, 7845 04:56:38,960 --> 04:56:41,280 THAT LEADS TO RECIPROCITY AND 7846 04:56:41,280 --> 04:56:45,280 CREATING THE ALL-IMPORTANT 7847 04:56:45,280 --> 04:56:45,720 RELATIONSHIPS. 7848 04:56:45,720 --> 04:56:46,360 DR. HARTLEY WHO WAS PITCH 7849 04:56:46,360 --> 04:56:47,720 HITTING FOR DR. ANNIE COHEN, 7850 04:56:47,720 --> 04:56:51,480 TOLD US ABOUT THE ALZHEIMER'S 7851 04:56:51,480 --> 04:56:55,320 BIOMARKERS CONSORTIUM FOR DOWN 7852 04:56:55,320 --> 04:56:57,080 SYNDROME AND ITS PARTNERSHIPS 7853 04:56:57,080 --> 04:56:58,120 WITH ITS COMMUNITY ADVISORY 7854 04:56:58,120 --> 04:57:00,960 BOARD WITH THE NDSS, WITH 7855 04:57:00,960 --> 04:57:02,000 WORKING GROUPS AND OTHERS. 7856 04:57:02,000 --> 04:57:05,280 WE HEARD FROM A NUMBER OF 7857 04:57:05,280 --> 04:57:06,960 COMMUNITY PARTICIPANTS AND I 7858 04:57:06,960 --> 04:57:09,960 LOVE THE QUOTE FROM MARIA WHO 7859 04:57:09,960 --> 04:57:11,880 SAID, IT'S IMPORTANT TO HAVE ALL 7860 04:57:11,880 --> 04:57:12,520 THOSE LETTERS AFTER YOUR NAME 7861 04:57:12,520 --> 04:57:14,480 BUT IT'S MORE CRITICAL THAT YOU 7862 04:57:14,480 --> 04:57:16,080 BE ABLE TO TALK TO THE MOMS. 7863 04:57:16,080 --> 04:57:19,000 AND I THINK THAT WAS REALLY 7864 04:57:19,000 --> 04:57:19,600 GROUNDING FOR ME AT LEAST, AND 7865 04:57:19,600 --> 04:57:20,880 IMPORTANT TO HEAR. 7866 04:57:20,880 --> 04:57:23,280 AND SHOWING UP. 7867 04:57:23,280 --> 04:57:24,640 AGAIN, AND AGAIN, TO LET THE 7868 04:57:24,640 --> 04:57:25,480 COMMUNITY KNOW THAT YOU'RE 7869 04:57:25,480 --> 04:57:28,080 SERIOUS AND YOU CARE ABOUT THEM 7870 04:57:28,080 --> 04:57:29,800 IS REALLY CRITICAL. 7871 04:57:29,800 --> 04:57:32,520 A WILT WIT TALKED ABOUT SETTING 7872 04:57:32,520 --> 04:57:34,400 NICOLE SHIREE WHITMOYER BUT 7873 04:57:34,400 --> 04:57:34,960 MAINTAINING FLEXIBILITY AND 7874 04:57:34,960 --> 04:57:36,760 GETTING THE WARM HANDOFF FROM 7875 04:57:36,760 --> 04:57:38,360 SOME OF HER COMMUNITY LIAISONS 7876 04:57:38,360 --> 04:57:40,880 TO HELP FACILITATE PARTICIPATION 7877 04:57:40,880 --> 04:57:42,320 IN RESEARCH. 7878 04:57:42,320 --> 04:57:45,920 AND DANNY, BRILLIANTLY GAVE US 7879 04:57:45,920 --> 04:57:47,200 THIS POEM THAT YOU SHARED WITH 7880 04:57:47,200 --> 04:57:50,200 US FOR WHICH WE ARE GRATEFUL. 7881 04:57:50,200 --> 04:57:53,320 AND THE CTSA TEAM FROM THE 7882 04:57:53,320 --> 04:57:55,680 RECRUITMENT INNOVATION CENTER 7883 04:57:55,680 --> 04:57:58,240 HELPED US IDENTIFY SOME TOOLS 7884 04:57:58,240 --> 04:57:59,000 AND RESOURCES THAT I THINK ARE 7885 04:57:59,000 --> 04:58:01,840 GOING TO BE REALLY VALUABLE FOR 7886 04:58:01,840 --> 04:58:03,640 INCREASING DIVERSITY WITHIN OUR 7887 04:58:03,640 --> 04:58:06,000 DOWN SYNDROME STUDIES. 7888 04:58:06,000 --> 04:58:07,320 THE COMMUNITY ENGAGEMENT STUDIOS 7889 04:58:07,320 --> 04:58:10,120 AND THE RECRUITMENT AND 7890 04:58:10,120 --> 04:58:11,160 RETENTION MATERIALS, THE CONSENT 7891 04:58:11,160 --> 04:58:13,080 FORM IS JUST NOT ENOUGH AND 7892 04:58:13,080 --> 04:58:14,200 REALLY DEVELOPING THE MESSAGES 7893 04:58:14,200 --> 04:58:17,280 IN A WAY THAT IS GOING TO BE 7894 04:58:17,280 --> 04:58:17,880 RESONATING WITH THE COMMUNITY 7895 04:58:17,880 --> 04:58:19,880 AND ENGAGING THE COMMUNITY IN 7896 04:58:19,880 --> 04:58:21,280 THE DEVELOPMENT OF THOSE 7897 04:58:21,280 --> 04:58:26,040 MATERIALS IS KEY. 7898 04:58:26,040 --> 04:58:28,080 AND THANK YOU TO JANICE TAKE 7899 04:58:28,080 --> 04:58:30,400 BEING YOUR ADULT DISABILITY 7900 04:58:30,400 --> 04:58:31,320 MEDICAL HEALTH CARE MODEL AND 7901 04:58:31,320 --> 04:58:33,080 THE IMPORTANCE OF COMBINING 7902 04:58:33,080 --> 04:58:36,160 PRIMARY CARE WITH CONSTITUTIVE 7903 04:58:36,160 --> 04:58:36,440 SERVICES. 7904 04:58:36,440 --> 04:58:38,520 THE IMPORTANCE OF TRANSITIONS 7905 04:58:38,520 --> 04:58:40,440 AND THE OPPORTUNITIES THAT THOSE 7906 04:58:40,440 --> 04:58:43,280 TRANSITIONS PROVIDE FOR ENGAGING 7907 04:58:43,280 --> 04:58:43,760 IN RESEARCH. 7908 04:58:43,760 --> 04:58:45,920 THE IMPORTANCE OF THE TEAM 7909 04:58:45,920 --> 04:58:47,640 APPROACH AND INCLUDING PEOPLE IN 7910 04:58:47,640 --> 04:58:49,880 THE LEAST RESTRICTIVE 7911 04:58:49,880 --> 04:58:50,200 ENVIRONMENTS. 7912 04:58:50,200 --> 04:58:53,280 AND THEN FINALLY, OUR LAST 7913 04:58:53,280 --> 04:58:57,080 SESSION, SESSION 6 ABOUT 7914 04:58:57,080 --> 04:58:57,560 COMMUNITY ENGAGEMENT. 7915 04:58:57,560 --> 04:58:59,280 THANK YOU KATE DOUGHERTY FOR 7916 04:58:59,280 --> 04:59:00,800 TALKING TO US ABOUT RURAL LIVING 7917 04:59:00,800 --> 04:59:03,680 AND HOW TO SHOE A HORSE. 7918 04:59:03,680 --> 04:59:05,680 I LOVE THE MESSAGE OF 7919 04:59:05,680 --> 04:59:06,880 UNDERSTANDING THE POWER OF 7920 04:59:06,880 --> 04:59:10,400 EXPOSURE AND HOW THAT REDUCES 7921 04:59:10,400 --> 04:59:10,640 STIGMA. 7922 04:59:10,640 --> 04:59:14,880 THE IMPORTANCE OF EDUCATION 7923 04:59:14,880 --> 04:59:15,680 FOCUSING ON THE POSSIBILITIES 7924 04:59:15,680 --> 04:59:17,800 AND RESULTING IN EMPOWERMENT AND 7925 04:59:17,800 --> 04:59:19,480 CHANGE. 7926 04:59:19,480 --> 04:59:21,280 DR. BRIAN CHICOINE, YOU'RE MODEL 7927 04:59:21,280 --> 04:59:24,320 WAS PROVIDING HEALTH CARE TO 7928 04:59:24,320 --> 04:59:25,240 ADULTS DOWN SYNDROME WITH OVER 7929 04:59:25,240 --> 04:59:26,400 6000 ADULTS WITH DOWN SYNDROME 7930 04:59:26,400 --> 04:59:29,280 YOU PROVIDED CARE FOR IS 7931 04:59:29,280 --> 04:59:30,360 INSPIRATIONAL AND YOU HAVE DONE 7932 04:59:30,360 --> 04:59:33,760 JUST AN AMAZING JOB OF OUTREACH 7933 04:59:33,760 --> 04:59:35,280 THAT I THINK PROVIDES A MODEL OF 7934 04:59:35,280 --> 04:59:37,280 CARE IN A WAY FORWARD TO HELP 7935 04:59:37,280 --> 04:59:40,680 INCREASE THE DIVERSITY OF OUR 7936 04:59:40,680 --> 04:59:42,120 PATIENT POPULATIONS, 7937 04:59:42,120 --> 04:59:43,720 PARTICULARLY THOSE THAT WE WANT 7938 04:59:43,720 --> 04:59:46,440 TO ASK TO PARTICIPATE IN 7939 04:59:46,440 --> 04:59:46,720 RESEARCH. 7940 04:59:46,720 --> 04:59:50,160 AND THEN FINALLY, DR. ELENA 7941 04:59:50,160 --> 04:59:51,960 GRIGORENKO AND YOUR TEAM TALKING 7942 04:59:51,960 --> 04:59:54,200 ABOUT EPIDEMIOLOGIC STUDIES IN 7943 04:59:54,200 --> 04:59:55,240 AFRICA THAT ARE GOING TO BE THE 7944 04:59:55,240 --> 04:59:57,720 FIRST TO GET STARTED IN THIS 7945 04:59:57,720 --> 05:00:01,360 COMMUNITY THAT WE TRULY HAVE 7946 05:00:01,360 --> 05:00:03,680 VERY LIMITED KNOWLEDGE ABOUT. 7947 05:00:03,680 --> 05:00:04,400 AND INCLUDING HERE YOUR EIGHT 7948 05:00:04,400 --> 05:00:07,280 CONCLUSIONS IN TERMS OF WORKING 7949 05:00:07,280 --> 05:00:09,200 WITH SPECIAL SAMPLES AND AGAIN 7950 05:00:09,200 --> 05:00:10,680 ENGAGING WITH THE LOCAL 7951 05:00:10,680 --> 05:00:11,480 COMMUNITY. 7952 05:00:11,480 --> 05:00:12,720 I THINK THAT IS REALLY KEY AND 7953 05:00:12,720 --> 05:00:15,720 YOU ELOQUENTLY DESCRIBED THAT 7954 05:00:15,720 --> 05:00:17,840 FOR ALL OF US IN YOUR PAST 7955 05:00:17,840 --> 05:00:18,480 EXPERIENCES. 7956 05:00:18,480 --> 05:00:21,600 AND FINALLY DR. NOEMI SPINAZZI. 7957 05:00:21,600 --> 05:00:23,840 I NAMED THE TITLE OF YOUR TALK, 7958 05:00:23,840 --> 05:00:24,320 IT STARTS WITH TRUST. 7959 05:00:24,320 --> 05:00:27,440 AND I LOVE THE FACT THAT YOU 7960 05:00:27,440 --> 05:00:29,440 QUOTED POP CULTURE WITH THE 99 7961 05:00:29,440 --> 05:00:30,880 PROBLEMS AND RESEARCH ISN'T ONE 7962 05:00:30,880 --> 05:00:32,240 OF THEM. 7963 05:00:32,240 --> 05:00:34,240 BUT I THINK THAT REALLY BRINGING 7964 05:00:34,240 --> 05:00:35,800 HOME TO US WHAT THE ISSUES ARE 7965 05:00:35,800 --> 05:00:39,480 FOR MANY OF OUR UNDERREPRESENTED 7966 05:00:39,480 --> 05:00:40,760 GROUPS AND HOW RESEARCH IS NOT 7967 05:00:40,760 --> 05:00:42,240 THE FIRST THING THEY ARE 7968 05:00:42,240 --> 05:00:43,480 THINKING ABOUT BY ANY STRETCH OF 7969 05:00:43,480 --> 05:00:45,080 THE IMAGINATION. 7970 05:00:45,080 --> 05:00:46,280 AND I THINK YOU ALSO VERY 7971 05:00:46,280 --> 05:00:48,520 CLEARLY ARTICULATED THE 7972 05:00:48,520 --> 05:00:50,600 IMPORTANCE OF EMBEDDING RESEARCH 7973 05:00:50,600 --> 05:00:52,880 WITHIN THE CLINICAL SETTING. 7974 05:00:52,880 --> 05:00:55,760 IT'S A TWO-WAY STREET. 7975 05:00:55,760 --> 05:00:56,320 RESEARCH WITHIN THE MEDICAL 7976 05:00:56,320 --> 05:00:56,520 HOME. 7977 05:00:56,520 --> 05:00:59,560 AND MAKING SURE THAT THERE IS A 7978 05:00:59,560 --> 05:01:00,720 GIVE-AND-TAKE IN BOTH 7979 05:01:00,720 --> 05:01:01,600 DIRECTIONS. 7980 05:01:01,600 --> 05:01:04,560 SO, THIS I THINK IS MY TAKE 7981 05:01:04,560 --> 05:01:05,280 AWAY. 7982 05:01:05,280 --> 05:01:06,720 THE GOOD NEWS, PEOPLE WITH DOWN 7983 05:01:06,720 --> 05:01:08,680 SYNDROME ARE LIVING LONGER DUE 7984 05:01:08,680 --> 05:01:10,880 TO ADVANCES IN MEDICAL CARE AND 7985 05:01:10,880 --> 05:01:11,160 RESEARCH. 7986 05:01:11,160 --> 05:01:14,280 THE BAD NEWS, THERE ARE 7987 05:01:14,280 --> 05:01:14,960 SIGNIFICANT HEALTH DISPARITIES 7988 05:01:14,960 --> 05:01:16,480 THAT EXIST WITH REGARD TO MANY 7989 05:01:16,480 --> 05:01:19,280 OF THE CO-OCCURRING CONDITIONS 7990 05:01:19,280 --> 05:01:20,480 AND CERTAINLY WITH REGARD TO 7991 05:01:20,480 --> 05:01:22,480 LIFE EXPECTANCY. 7992 05:01:22,480 --> 05:01:24,120 THE OPPORTUNITY IS THAT WITH THE 7993 05:01:24,120 --> 05:01:26,480 NEW INCLUDE PROJECT AND FUNDING, 7994 05:01:26,480 --> 05:01:28,320 WE POTENTIALLY HAVE THE 7995 05:01:28,320 --> 05:01:31,360 RESOURCES TO ADDRESS THESE 7996 05:01:31,360 --> 05:01:32,240 DISPARITIES SO THAT THE 7997 05:01:32,240 --> 05:01:33,440 CHALLENGE FOR US IS TO IDENTIFY 7998 05:01:33,440 --> 05:01:35,960 THE BEST STRATEGIES THAT WILL 7999 05:01:35,960 --> 05:01:38,800 INCREASE DIVERSITY AMONG 8000 05:01:38,800 --> 05:01:40,640 RESEARCH PARTICIPANTS AND 8001 05:01:40,640 --> 05:01:41,560 RESEARCHERS AND TAKE ALL OF THE 8002 05:01:41,560 --> 05:01:43,320 WONDERFUL IDEAS AND FEEDBACK 8003 05:01:43,320 --> 05:01:46,240 FROM THIS WORKSHOP, INCORPORATE 8004 05:01:46,240 --> 05:01:46,880 THEM INTO OUR RESEARCH TO 8005 05:01:46,880 --> 05:01:48,520 IMPROVE QUALITY OF LIFE FOR ALL 8006 05:01:48,520 --> 05:01:49,960 PEOPLE WITH DOWN SYNDROME AND 8007 05:01:49,960 --> 05:01:51,680 RECOGNIZING OF COURSE THAT WE 8008 05:01:51,680 --> 05:01:53,120 ARE PARTNERS IN THIS JOURNEY. 8009 05:01:53,120 --> 05:01:55,000 AND I JUST WANT TO LEAVE YOU 8010 05:01:55,000 --> 05:01:59,320 WITH ONE MORE OPPORTUNITY TO 8011 05:01:59,320 --> 05:02:00,240 PARTICIPATE IN AN INCLUDE 8012 05:02:00,240 --> 05:02:02,120 INVESTIGATOR ANNUAL WORKSHOP 8013 05:02:02,120 --> 05:02:03,560 WHERE INVESTIGATORS WILL BE 8014 05:02:03,560 --> 05:02:06,320 TALKING ABOUT THEIR RESEARCH IN 8015 05:02:06,320 --> 05:02:07,160 DOWN SYNDROME. 8016 05:02:07,160 --> 05:02:11,240 THIS WILL BE HELD OCTOBER 12 -- 8017 05:02:11,240 --> 05:02:13,280 SORRY I FORGOT THE PUT THE DATE 8018 05:02:13,280 --> 05:02:14,760 ON THIS SLIDE. 8019 05:02:14,760 --> 05:02:16,400 IT'S A VIRTUAL WORKSHOP AND FREE 8020 05:02:16,400 --> 05:02:18,040 AND OPEN TO EVERYBODY. 8021 05:02:18,040 --> 05:02:19,440 WE CAN ALSO PUT THIS LINK IN THE 8022 05:02:19,440 --> 05:02:21,280 CHAT IF NEED BE. 8023 05:02:21,280 --> 05:02:23,200 SIGN UP FOR THAT IF YOU'RE 8024 05:02:23,200 --> 05:02:25,000 INTERESTED IN LEARNING MORE 8025 05:02:25,000 --> 05:02:26,080 ABOUT WHAT INCLUDE INVESTIGATORS 8026 05:02:26,080 --> 05:02:28,240 ARE STUDYING. 8027 05:02:28,240 --> 05:02:37,560 THANK YOU ALL SO, SO MUCH. 8028 05:02:37,560 --> 05:02:40,520 >> AND THAT CONCLUDES OUR TWO 8029 05:02:40,520 --> 05:02:43,360 HOT DAYS OF THIS VIRTUAL 8030 05:02:43,360 --> 05:02:44,480 WORKSHOP, ORGANIZED BY INCLUDE. 8031 05:02:44,480 --> 05:02:47,040 A HUGE SHOUT OUT TO ALL OF THE 8032 05:02:47,040 --> 05:02:49,280 PLANNING COMMITTEE, THE 8033 05:02:49,280 --> 05:02:52,080 SPEAKERS, ATTENDEES, OUR 8034 05:02:52,080 --> 05:02:53,240 INTERPRETERS AND TO ALL OF YOU. 8035 05:02:53,240 --> 05:02:56,480 THANK YOU AND HAVE A GREAT REST 8036 05:02:56,480 --> 05:03:06,760 OF YOUR WEEK.