1 00:00:05,560 --> 00:00:09,600 >>WELCOME TO 2 00:00:09,600 --> 00:00:13,160 THE 180th MEETING OF THE NICHD 3 00:00:13,160 --> 00:00:17,760 ADVISORY COUNCIL. 4 00:00:17,760 --> 00:00:20,480 ONCE AGAIN WE APPRECIATE YOUR 5 00:00:20,480 --> 00:00:21,360 COMBINATION OF THE VISUAL 6 00:00:21,360 --> 00:00:21,600 FORMAT. 7 00:00:21,600 --> 00:00:23,720 TODAY THE ENTIRE MEETING IS OPEN 8 00:00:23,720 --> 00:00:25,360 TO THE PUBLIC AND BEING 9 00:00:25,360 --> 00:00:27,560 BROADCAST ON THE NIH'S VIDEOCAST 10 00:00:27,560 --> 00:00:27,960 NETWORK. 11 00:00:27,960 --> 00:00:29,440 I'D ALSO LIKE TO THANK THE 12 00:00:29,440 --> 00:00:30,800 MEMBERS OF THE PUBLIC WHO ARE 13 00:00:30,800 --> 00:00:33,200 PRESENT ON THIS CALL ESPECIALLY 14 00:00:33,200 --> 00:00:34,000 THOSE WHO ARE REPRESENTING 15 00:00:34,000 --> 00:00:37,960 PROFESSIONAL SOCIETIES AND 16 00:00:37,960 --> 00:00:38,640 RESEARCH ORGANIZATIONS NATURAL 17 00:00:38,640 --> 00:00:41,800 TO EVERYONE WHO IS ABLE TO JOIN 18 00:00:41,800 --> 00:00:43,560 US TODAY. 19 00:00:43,560 --> 00:00:46,920 WITH THE VIRTUAL MEETING FORMAT, 20 00:00:46,920 --> 00:00:50,760 PLEASE REMEMBER TO UNMUTE 21 00:00:50,760 --> 00:00:53,120 YOURSELF BEFORE SPEAKING SO THE 22 00:00:53,120 --> 00:00:54,320 TRANSCRIBER AND VIDEOCAST 23 00:00:54,320 --> 00:00:55,960 OBSERVERS WILL KNOW WHO IS 24 00:00:55,960 --> 00:00:56,280 SPEAKING. 25 00:00:56,280 --> 00:00:58,560 AFTER YOU SPEAK, PLEASE BE SURE 26 00:00:58,560 --> 00:01:00,480 TO MUTE YOUR MICROPHONE IN ORDER 27 00:01:00,480 --> 00:01:02,800 TO PREVENT FEEDBACK LOOPS OR 28 00:01:02,800 --> 00:01:04,400 OTHER AUDITORY INTERFERENCES. 29 00:01:04,400 --> 00:01:05,720 I'M SURE EVERYONE IS FAMILIAR 30 00:01:05,720 --> 00:01:06,320 WITH THIS AFTER TWO YEARS ON 31 00:01:06,320 --> 00:01:10,320 ZOOM. 32 00:01:10,320 --> 00:01:12,240 WITH US FOR THE FIRST TIME AS 33 00:01:12,240 --> 00:01:15,360 REGULAR MEMBERS OF THE COUNCIL 34 00:01:15,360 --> 00:01:21,480 I'D LIKE TO WELCOME DR. 35 00:01:21,480 --> 00:01:23,720 DR. MOLDONADO AND I'LL LIKE TO 36 00:01:23,720 --> 00:01:24,920 CALL ON HOME TO BRIEFLY 37 00:01:24,920 --> 00:01:27,880 INTRODUCE THEMSELVES. 38 00:01:27,880 --> 00:01:33,560 LET'S START WITH DR. MALDONADO. 39 00:01:33,560 --> 00:01:35,800 >> I'M PROFESSOR OF GLOBAL 40 00:01:35,800 --> 00:01:37,360 HEALTH AND INFECTIOUS DISEASES 41 00:01:37,360 --> 00:01:41,680 IN THE DEPARTMENT OF PEDIATRICS 42 00:01:41,680 --> 00:01:43,920 AT STANFORD UNIVERSITY AND HAVE 43 00:01:43,920 --> 00:01:45,200 A POINT APPOINTMENT IN 44 00:01:45,200 --> 00:01:46,080 POPULATION HEALTH. 45 00:01:46,080 --> 00:01:53,000 MY BACKGROUND IS A PEDIATRIC 46 00:01:53,000 --> 00:01:54,680 INFECTIOUS DISEASE 47 00:01:54,680 --> 00:01:56,280 EPIDEMIOLOGIST ON STUDIES OF 48 00:01:56,280 --> 00:01:59,280 REAL WORLD VACCINE EFFECTIVENESS 49 00:01:59,280 --> 00:02:00,880 IN PRIMARY INDIGENOUS 50 00:02:00,880 --> 00:02:02,040 POPULATIONS AND IN POPULATIONS 51 00:02:02,040 --> 00:02:04,520 OF CHILDREN WITH HIV INFECTION. 52 00:02:04,520 --> 00:02:07,000 MY MAIN AREAS OF INTEREST HAVE 53 00:02:07,000 --> 00:02:10,400 BEEN POLIO VACCINE 54 00:02:10,400 --> 00:02:11,800 EFFECTIVENESS, ORAL POLIO 55 00:02:11,800 --> 00:02:13,440 VACCINE TRANSMISSION AND 56 00:02:13,440 --> 00:02:15,760 MODELLING OF TRANSMISSION 57 00:02:15,760 --> 00:02:19,000 DYNAMICS OF O.P.B. TO SIMULATE 58 00:02:19,000 --> 00:02:25,080 THE VACCINE TRANSMISSION IN 59 00:02:25,080 --> 00:02:30,440 REAL-WORLD SETTINGS AND INFANT 60 00:02:30,440 --> 00:02:31,920 AND MOTHER INFECTIONS. 61 00:02:31,920 --> 00:02:35,000 >> THANK YOU FOR JOINING US AND 62 00:02:35,000 --> 00:02:36,360 UNFORTUNATELY YOUR EXPERTISE IN 63 00:02:36,360 --> 00:02:37,560 POLIO VIRUS IS GOING TO BE 64 00:02:37,560 --> 00:02:47,800 NEEDED AGAIN. 65 00:02:49,520 --> 00:02:51,000 IS DR. BAIER WITH US? 66 00:02:51,000 --> 00:02:53,440 I DON'T SEE HIM ON OUR SCREEN 67 00:02:53,440 --> 00:03:03,160 BUT PLEASE SPEAK UP IF YOU ARE. 68 00:03:03,160 --> 00:03:09,320 NOW I'LL TURN THE MEETING OVER 69 00:03:09,320 --> 00:03:12,960 TO DR. REBEKAH RASOOLY IN OUR 70 00:03:12,960 --> 00:03:15,960 DIVISION OF EXTRAMURAL 71 00:03:15,960 --> 00:03:16,240 ACTIVITIES. 72 00:03:16,240 --> 00:03:17,800 >> THANK YOU AND WELCOME. 73 00:03:17,800 --> 00:03:20,800 GOOD AFTERNOON. 74 00:03:20,800 --> 00:03:24,560 I'M GOING TO REVIEW 75 00:03:24,560 --> 00:03:26,360 CONFIDENTIALITY AND CONFLICT OF 76 00:03:26,360 --> 00:03:27,600 INTEREST FOR YOU. 77 00:03:27,600 --> 00:03:29,800 ON THE COUNCIL WEBSITE YOU 78 00:03:29,800 --> 00:03:31,680 SHOULD HAVE AGREED AND SIGNED 79 00:03:31,680 --> 00:03:34,960 AND READ THE CONFIDENTIALITY AND 80 00:03:34,960 --> 00:03:36,520 NON-DISCLOSURE RULES FOR SPECIAL 81 00:03:36,520 --> 00:03:37,720 GOVERNMENT EMPLOYEES BEFORE YOU 82 00:03:37,720 --> 00:03:41,280 EVALUATED ANY OF THE GRANT 83 00:03:41,280 --> 00:03:41,600 APPLICATIONS. 84 00:03:41,600 --> 00:03:45,440 AS SO, YOU SHOULD HAVE RESER 85 00:03:45,440 --> 00:03:48,480 RESERVRESERVICE 86 00:03:48,800 --> 00:03:50,840 -- RECEIVED YOUR CONFLICT OF 87 00:03:50,840 --> 00:03:53,440 INTEREST FORM AND IF NOT PLEASE 88 00:03:53,440 --> 00:03:54,360 LET US KNOW TO SEND THE 89 00:03:54,360 --> 00:03:57,080 APPROPRIATE DOCUMENTS. 90 00:03:57,080 --> 00:03:59,800 PLEASE SIGN THE CERTIFICATION 91 00:03:59,800 --> 00:04:03,120 FORM PRIOR TO THE CLOSED SESSION 92 00:04:03,120 --> 00:04:05,480 TOMORROW AND SEND THEM IN. 93 00:04:05,480 --> 00:04:07,640 ALSO REMEMBER YOU CANNOT SERVE 94 00:04:07,640 --> 00:04:11,800 ON ANY NIH PEER-REVIEW PANEL 95 00:04:11,800 --> 00:04:13,480 WHILE SERVING AS A COUNCIL 96 00:04:13,480 --> 00:04:16,760 MEMBER AND YOU CANNOT PROVIDE 97 00:04:16,760 --> 00:04:19,680 SECOND-LEVEL REVIEW OF COUNCIL 98 00:04:19,680 --> 00:04:21,480 FOR ANY APPLICATION FOR WHERE 99 00:04:21,480 --> 00:04:24,520 YOU PARTICIPATED IN THE FIRST 100 00:04:24,520 --> 00:04:25,080 VIEW. 101 00:04:25,080 --> 00:04:29,800 IT'S NIH'S POLICY AN INDIVIDUAL 102 00:04:29,800 --> 00:04:31,560 CANNOT SERVE ON FIRST AND SECOND 103 00:04:31,560 --> 00:04:32,560 LEVELS OF PEER REVIEW. 104 00:04:32,560 --> 00:04:35,800 IN ADDITION I WANT TO BRING TO 105 00:04:35,800 --> 00:04:37,600 YOUR ATTENTION DURING THE CLOSED 106 00:04:37,600 --> 00:04:40,120 SESSION, PLEASE SHUT OFF 107 00:04:40,120 --> 00:04:41,840 CLOUD-BASED VOICE SERVICES SUCH 108 00:04:41,840 --> 00:04:45,240 AS ALEXA OR OTHER DEVICES AS 109 00:04:45,240 --> 00:04:48,240 THESE DEVICES MAY BE ABLE TO 110 00:04:48,240 --> 00:04:49,160 CAPTURE CONFIDENTIAL 111 00:04:49,160 --> 00:04:49,440 INFORMATION. 112 00:04:49,440 --> 00:04:53,440 THANK YOU. 113 00:04:53,440 --> 00:04:56,120 LET'S THEN MOVE ON TO OUR FIRST 114 00:04:56,120 --> 00:04:59,800 ORDER OF BUSINESS WHICH IS TO 115 00:04:59,800 --> 00:05:01,480 APPROVE THE MINUTES FROM THE 116 00:05:01,480 --> 00:05:04,680 LAST MEETING ON JUNE 13 AND 14, 117 00:05:04,680 --> 00:05:04,880 2022. 118 00:05:04,880 --> 00:05:06,560 THESE MINUTES HAVE BEEN POSTED 119 00:05:06,560 --> 00:05:08,360 ON THE COUNCIL MEMBER WEBSITE 120 00:05:08,360 --> 00:05:11,800 AND ONCE THEY ARE APPROVED, WILL 121 00:05:11,800 --> 00:05:13,360 BE POSTED ON THE NICHD PUBLIC 122 00:05:13,360 --> 00:05:19,560 COUNCIL SITE. 123 00:05:19,560 --> 00:05:21,200 THIS IS THE FIRST SITUATION IN 124 00:05:21,200 --> 00:05:22,280 WHICH YOU'LL BE VOTING AND LET 125 00:05:22,280 --> 00:05:24,280 ME REMIND YOU THE WAY YOU DO 126 00:05:24,280 --> 00:05:25,800 VOTING IS GO TO THE BOTTOM OF 127 00:05:25,800 --> 00:05:27,960 YOUR SCREEN AND YOU SEE THE 128 00:05:27,960 --> 00:05:29,800 BUTTON CALLED REACTIONS AND WHEN 129 00:05:29,800 --> 00:05:31,520 YOU PRESS ON THAT YOU'LL SEE 130 00:05:31,520 --> 00:05:35,840 THERE'S A GREEN CHECK ARROW FOR 131 00:05:35,840 --> 00:05:39,240 YES OR RED X FOR NO AND IF 132 00:05:39,240 --> 00:05:43,520 YOU'RE AABSTAINING -- 133 00:05:43,520 --> 00:05:44,720 ABSTAINING JUST RAISE YOUR HAND 134 00:05:44,720 --> 00:05:48,080 AND WE'LL TABULATE YOUR VOTES. 135 00:05:48,080 --> 00:05:49,480 MAY HAVE A NOTION APPROVE THE 136 00:05:49,480 --> 00:05:50,360 JUNE MINUTES. 137 00:05:50,360 --> 00:05:53,480 >> THIS IS SHERRI BARKIN. 138 00:05:53,480 --> 00:05:59,760 MOVE TO APPROVE. 139 00:05:59,760 --> 00:06:01,760 CAN SOMEONE ENDORSE THAT MOTION. 140 00:06:01,760 --> 00:06:05,440 >> THIS IS CATHERINE. 141 00:06:05,440 --> 00:06:14,240 I SECOND. 142 00:06:14,240 --> 00:06:18,480 >> PLEASE VOTE FOR OR AGAINST OR 143 00:06:18,480 --> 00:06:21,480 ABSTAIN USING THE BUTTONS ON THE 144 00:06:21,480 --> 00:06:31,960 BOTTOM OF YOUR ZOOM SCREEN. 145 00:06:34,760 --> 00:06:38,400 WE'LL THEN MOVE FORWARD. 146 00:06:38,400 --> 00:06:39,360 WE'RE GOING TO BE MEETING AGAIN 147 00:06:39,360 --> 00:06:41,800 AS WE DO THREE TIMES A YEAR. 148 00:06:41,800 --> 00:06:44,600 NEXT ON JANUARY 24, 25. 149 00:06:44,600 --> 00:06:46,000 AS WE WILL DO -- 150 00:06:46,000 --> 00:06:51,840 >> EXCUSE ME, REBEKAH, I THINK 151 00:06:51,840 --> 00:06:53,320 DR. EGIN HAD A QUESTION? 152 00:06:53,320 --> 00:06:56,720 >> NO, I DIDN'T HAVE A QUESTION. 153 00:06:56,720 --> 00:06:58,120 I COULDN'T VOTE BECAUSE I WASN'T 154 00:06:58,120 --> 00:07:00,840 THERE IN JUNE SO I THOUGHT 155 00:07:00,840 --> 00:07:02,360 RAISING MY HAND WAS TO SAY 156 00:07:02,360 --> 00:07:02,600 ABSTAIN. 157 00:07:02,600 --> 00:07:02,880 I'M SORRY. 158 00:07:02,880 --> 00:07:09,320 >> THANK YOU. 159 00:07:09,320 --> 00:07:12,000 >> SO WE MEET JANUARY 24 AND 160 00:07:12,000 --> 00:07:14,000 25th A VIRTUAL MEETING AND THE 161 00:07:14,000 --> 00:07:15,480 JANUARY MEETING WILL BE A 162 00:07:15,480 --> 00:07:16,840 VIRTUAL MEETING BECAUSE OF THE 163 00:07:16,840 --> 00:07:18,640 DIFFICULTIES OF TRAVELLING IN 164 00:07:18,640 --> 00:07:19,480 THE WINTER. 165 00:07:19,480 --> 00:07:20,920 FOLLOWING THAT, SUBSEQUENT 166 00:07:20,920 --> 00:07:24,880 MEETING IS JUNE 6, 7, WE HOPE 167 00:07:24,880 --> 00:07:26,480 WE'LL BE IN PERSON AND THE REST 168 00:07:26,480 --> 00:07:29,080 OF THE DATES GOING FORWARD ARE 169 00:07:29,080 --> 00:07:36,920 SEPTEMBER 6 AND 7, JANUARY 22 170 00:07:36,920 --> 00:07:43,920 AND 23, 20 AND SEPTEMBER 4 AND 171 00:07:43,920 --> 00:07:44,800 5, 2024. 172 00:07:44,800 --> 00:07:46,400 I'LL GIVE THE MEETING BACK TO 173 00:07:46,400 --> 00:07:47,800 DR. BIANCHI FOR THE DIRECTOR'S 174 00:07:47,800 --> 00:07:48,000 REPORT. 175 00:07:48,000 --> 00:07:49,960 >> THANK YOU, REBEKAH. 176 00:07:49,960 --> 00:07:53,440 I'LL WAIT FOR THE SLIDES TO COME 177 00:07:53,440 --> 00:08:03,520 UP. 178 00:08:11,240 --> 00:08:13,440 >> IT'S HARD TO BELIEVE BUT IT'S 179 00:08:13,440 --> 00:08:14,960 SEPTEMBER AND WE'RE HERE FOR 180 00:08:14,960 --> 00:08:19,760 OUGHT MANY COUNCIL MEETING. 181 00:08:19,760 --> 00:08:21,440 SO TODAY WE HAVE QUITE A NUMBER 182 00:08:21,440 --> 00:08:23,640 OF TOPICS TO COVER. 183 00:08:23,640 --> 00:08:27,520 I'M HOPING TO SPEND ABOUT 30 184 00:08:27,520 --> 00:08:29,480 MINUTES ON THIS MORE FORMAL 185 00:08:29,480 --> 00:08:32,680 PRESENTATION AND THEN LEAVE 15 186 00:08:32,680 --> 00:08:33,160 MINUTES FOR QUESTIONS. 187 00:08:33,160 --> 00:08:36,520 SO WE'LL TALK ABOUT THE 60th 188 00:08:36,520 --> 00:08:38,720 ANNIVERSARY BRIEFLY. 189 00:08:38,720 --> 00:08:40,640 OVER ALL NIH LEADERSHIP UPDATES, 190 00:08:40,640 --> 00:08:46,560 THE BUDGET WHICH IS ALWAYS A 191 00:08:46,560 --> 00:08:48,240 SOURCE OF GREAT INTEREST AND 192 00:08:48,240 --> 00:08:51,400 UPDATES ON THE NICHD RACIAL AND 193 00:08:51,400 --> 00:08:54,800 ETHNIC EQUITY PLAN, BRIEF UPDATE 194 00:08:54,800 --> 00:08:58,080 ON RECOVER FOR THE PEDIATRIC 195 00:08:58,080 --> 00:09:01,240 POPULATION OR LONG COVID AND 196 00:09:01,240 --> 00:09:03,160 UPDATE ON THE IMPROVE INITIATIVE 197 00:09:03,160 --> 00:09:04,480 WHICH HAS BEEN OUR MAIN FOCUS 198 00:09:04,480 --> 00:09:07,080 OVER THE LAST FEW MONTHS ON 199 00:09:07,080 --> 00:09:08,120 MATERNAL HEALTH RESEARCH AND I 200 00:09:08,120 --> 00:09:11,000 THOUGHT I WOULD PRESENT TO YOU A 201 00:09:11,000 --> 00:09:12,800 SUCCESSFUL OUTCOME FROM A DATA 202 00:09:12,800 --> 00:09:15,280 SET THAT HAS BEEN DEPOSITED IN 203 00:09:15,280 --> 00:09:18,320 OUR DATA AND SPECIMEN HUB AND 204 00:09:18,320 --> 00:09:21,680 THEN SINCE WE WILL BE SEGUEING 205 00:09:21,680 --> 00:09:22,840 INTO INTRAMURAL RESEARCH I DID 206 00:09:22,840 --> 00:09:26,200 WANT TO TELL YOU ABOUT THE 207 00:09:26,200 --> 00:09:27,120 CLINICAL CENTER PEDIATRIC 208 00:09:27,120 --> 00:09:29,560 RESEARCH STRATEGIC PLAN AND THEN 209 00:09:29,560 --> 00:09:35,680 END WITH NICHD STAFF UPDATES. 210 00:09:35,680 --> 00:09:39,480 SO IN ABOUT A MONTH WE WILL BE 211 00:09:39,480 --> 00:09:41,440 CELEBRATING NICHD'S 60th 212 00:09:41,440 --> 00:09:46,560 ANNIVERSARY ON THE EXACT DAY 213 00:09:46,560 --> 00:09:53,120 THAT NICHD WAS OFFICIALLY 214 00:09:53,120 --> 00:09:58,600 RECOGNIZED OCTOBER 17, 1962 AND 215 00:09:58,600 --> 00:09:59,800 ORGANIZED AROUND OUR MISSION 216 00:09:59,800 --> 00:10:01,800 WHICH IS HEALTHY PREGNANCIES, 217 00:10:01,800 --> 00:10:05,520 HEALTHY CHILDREN AND HEALTHY AND 218 00:10:05,520 --> 00:10:06,560 OPTIMAL LIVES. 219 00:10:06,560 --> 00:10:08,520 IF YOU HAVEN'T ALREADY 220 00:10:08,520 --> 00:10:10,200 REGISTERED, WE CERTAINLY WELCOME 221 00:10:10,200 --> 00:10:13,880 TO YOU ATTEND VIRTUALLY AND THE 222 00:10:13,880 --> 00:10:14,680 LINK IS HERE. 223 00:10:14,680 --> 00:10:18,720 WE ALSO HAVE AN ACTIVELY UPDATED 224 00:10:18,720 --> 00:10:22,120 ANNIVERSARY WEB PAGE AND THAT 225 00:10:22,120 --> 00:10:25,520 HAS BEEN GIVING US KEY ADVANCES 226 00:10:25,520 --> 00:10:27,440 AND MILESTONES IN NICHD'S 227 00:10:27,440 --> 00:10:29,440 HISTORY. 228 00:10:29,440 --> 00:10:32,920 IT'S ALSO HAD A SERIES OF 229 00:10:32,920 --> 00:10:35,800 PROFILES ON PEOPLE WHO HELP 230 00:10:35,800 --> 00:10:37,200 NICHD ACHIEVE ITS MISSION. 231 00:10:37,200 --> 00:10:38,840 AND IT WILL ALSO TALK A LITTLE 232 00:10:38,840 --> 00:10:40,840 BIT ABOUT NICHD'S FUTURE 233 00:10:40,840 --> 00:10:41,840 RESEARCH DIRECTIONS. 234 00:10:41,840 --> 00:10:44,840 SO AS A SAID, IT'S AN ACTIVE 235 00:10:44,840 --> 00:10:47,120 LIVING WEB PAGE THAT IS 236 00:10:47,120 --> 00:10:48,720 FREQUENTLY UPDATED SO WE 237 00:10:48,720 --> 00:10:49,720 ENCOURAGE YOU TO GO THERE AND 238 00:10:49,720 --> 00:10:52,880 MORE IMPORTANTLY WE HOPE YOU CAN 239 00:10:52,880 --> 00:10:57,440 JOIN US FOR PART OF THE 240 00:10:57,440 --> 00:10:59,760 ANNIVERSARY SYMPOSIUM. 241 00:10:59,760 --> 00:11:02,640 SO I THINK MOST OF YOU KNOW THAT 242 00:11:02,640 --> 00:11:05,400 DR. FRANCES COLLINS WHO SERVED 243 00:11:05,400 --> 00:11:09,480 AS THE DIRECTOR OF NIH FOR 12 244 00:11:09,480 --> 00:11:11,840 YEARS, A RECORD-SETTING AMOUNT 245 00:11:11,840 --> 00:11:13,800 OF TIME AND SERVING MULTIPLE 246 00:11:13,800 --> 00:11:17,400 PRESIDENTS AND STEPPED DOWN AS 247 00:11:17,400 --> 00:11:19,400 THE DIRECTOR OF NICHD IN 248 00:11:19,400 --> 00:11:20,680 DECEMBER 2021. 249 00:11:20,680 --> 00:11:23,840 DR. LARRY TABAK WHO WAS 250 00:11:23,840 --> 00:11:29,440 PRINCIPLE DEPUTY DIRECTOR FOR 251 00:11:29,440 --> 00:11:34,760 DR. COLLINS INITIALLY BECAME THE 252 00:11:34,760 --> 00:11:35,800 ACTING DIRECTOR. 253 00:11:35,800 --> 00:11:37,560 WHY DOES HE HAVE THIS STRANGE 254 00:11:37,560 --> 00:11:40,800 TITLE, PERFORMING THE DUTIES OF 255 00:11:40,800 --> 00:11:42,400 THE NIH DIRECTOR. 256 00:11:42,400 --> 00:11:44,160 THAT'S BECAUSE THERE'S A TIME 257 00:11:44,160 --> 00:11:49,160 LIMIT ON HOW LONG IN AN ACTING 258 00:11:49,160 --> 00:11:50,520 POSITION AT NIH. 259 00:11:50,520 --> 00:11:52,680 THE GOVERNMENT HAS ITS WAYS AND 260 00:11:52,680 --> 00:11:55,200 SO NOW HIS TITLE HAS CHANGED TO 261 00:11:55,200 --> 00:11:56,840 PERFORMING THE DUTIES OF THE NIH 262 00:11:56,840 --> 00:11:57,120 DIRECTOR. 263 00:11:57,120 --> 00:11:59,880 WHAT THAT MEANS IS HE IS 264 00:11:59,880 --> 00:12:03,160 EFFECTIVELY THE ACTING NIH 265 00:12:03,160 --> 00:12:03,440 DIRECTOR. 266 00:12:03,440 --> 00:12:05,440 THE WHITE HOUSE CONTINUES TO 267 00:12:05,440 --> 00:12:07,800 CONDUCT A SEARCH FOR THE NEXT 268 00:12:07,800 --> 00:12:09,920 NIH DIRECTOR. 269 00:12:09,920 --> 00:12:11,120 NOW, REMEMBER THIS IS A 270 00:12:11,120 --> 00:12:12,400 POLITICAL APPOINTMENT INITIALLY 271 00:12:12,400 --> 00:12:13,760 MADE BY THE PRESIDENT AND THEN 272 00:12:13,760 --> 00:12:18,480 REQUIRES SENATE CONFIRMATION. 273 00:12:18,480 --> 00:12:23,840 SO WHOMEVER IS APPOINTED WILL 274 00:12:23,840 --> 00:12:28,680 ONLY HAVE TWO CONFIRMED YEARS 275 00:12:28,680 --> 00:12:29,840 PENDING WHOEVER IS THE NEXT 276 00:12:29,840 --> 00:12:31,640 PRESIDENT OR PRESIDENT BIDEN 277 00:12:31,640 --> 00:12:33,480 CONTINUES IN HIS ROLE. 278 00:12:33,480 --> 00:12:35,960 DR. TABAK HAS INFORMED US THAT 279 00:12:35,960 --> 00:12:39,760 THEY REALLY DON'T EXPECT THAT 280 00:12:39,760 --> 00:12:40,960 ANYONE WILL BE NAMED UNTIL 281 00:12:40,960 --> 00:12:43,480 DECEMBER AT THE EARLIEST. 282 00:12:43,480 --> 00:12:46,200 SO HE'S REALLY GONE FROM AN 283 00:12:46,200 --> 00:12:48,440 ACTING, I'M NOT GOING TO MAKE A 284 00:12:48,440 --> 00:12:50,720 DECISION MODE TO NOW REALLY 285 00:12:50,720 --> 00:12:54,120 SAYING WE NEED TO MOVE FORWARD 286 00:12:54,120 --> 00:12:55,800 AND MAKE ACTIVE DECISIONS 287 00:12:55,800 --> 00:12:59,840 PARTICULARLY ON A NUMBER OF THE 288 00:12:59,840 --> 00:13:03,120 HIGH-LEVEL SEARCHS THAT ARE 289 00:13:03,120 --> 00:13:05,440 ONGOING AS FOR THE DIRECTOR OF 290 00:13:05,440 --> 00:13:12,280 NCATS IS OPEN. 291 00:13:12,280 --> 00:13:14,200 WE HAD HAD AN APPOINTMENT FOR 292 00:13:14,200 --> 00:13:17,440 THE NEW DIRECTOR OF THE NATIONAL 293 00:13:17,440 --> 00:13:17,840 CANCER INSTITUTE. 294 00:13:17,840 --> 00:13:21,080 DR. BOTONOLI ALSO A POLITICAL 295 00:13:21,080 --> 00:13:22,560 APPOINTMENT AND FOR THOSE WHO 296 00:13:22,560 --> 00:13:25,120 DON'T KNOW THERE'S REALLY ONLY 297 00:13:25,120 --> 00:13:26,440 TWO LEADERSHIP APPOINTMENTS AT 298 00:13:26,440 --> 00:13:27,440 NIH THAT ARE POLITICAL. 299 00:13:27,440 --> 00:13:29,320 ONE IS THE OVER ALL DIRECTOR AND 300 00:13:29,320 --> 00:13:33,480 ONE IS THE DIRECTOR OF THE 301 00:13:33,480 --> 00:13:39,520 NATIONAL CANCER INSTITUTE. 302 00:13:39,520 --> 00:13:45,760 FORTUNATELY FOR DR. BERTAGNOLLI 303 00:13:45,760 --> 00:13:47,960 DOESN'T HAVE GO THROUGH SENATE 304 00:13:47,960 --> 00:13:52,080 CONFIRMATION AND SHE IS AN 305 00:13:52,080 --> 00:13:53,200 ONCOLOGIST AND SURGEON. 306 00:13:53,200 --> 00:13:55,200 SHE'S CURRENTLY PROFESSOR OF 307 00:13:55,200 --> 00:13:57,920 SURGERY AT HARVARD MEDICAL 308 00:13:57,920 --> 00:13:58,360 SCHOOL. 309 00:13:58,360 --> 00:14:03,480 SHE'S A SURGEON AT BRIGHAM AND 310 00:14:03,480 --> 00:14:05,480 WOMEN'S HOSPITALS AND A MEMBER 311 00:14:05,480 --> 00:14:08,040 OF THE SARCOMA DISEASE CENTER AT 312 00:14:08,040 --> 00:14:11,320 THE DANA FARBER CANCER 313 00:14:11,320 --> 00:14:11,680 INSTITUTE. 314 00:14:11,680 --> 00:14:13,880 SHE'S SPEARHEAD PRESIDENT 315 00:14:13,880 --> 00:14:15,720 BIDEN'S CANCER MOON SHOT 316 00:14:15,720 --> 00:14:16,760 INITIATIVE. 317 00:14:16,760 --> 00:14:21,160 PRESIDENT BIDEN IS IN BOSTON 318 00:14:21,160 --> 00:14:25,600 TODAY AT THE J.F.K. LIBRARY 319 00:14:25,600 --> 00:14:27,360 CELEBRATING THE 60th ANNIVERSARY 320 00:14:27,360 --> 00:14:29,400 OF PRESIDENT KENNEDY'S MOON SHOT 321 00:14:29,400 --> 00:14:29,680 INITIATIVE. 322 00:14:29,680 --> 00:14:33,800 IT'S MAKING THE LINK BETWEEN THE 323 00:14:33,800 --> 00:14:36,920 CANCER MOON SHOT AND THE MOON 324 00:14:36,920 --> 00:14:39,160 SHOT TO THE ACTUAL MOON. 325 00:14:39,160 --> 00:14:43,400 DR. BERTAGNOLLI IS IN BOSTON AND 326 00:14:43,400 --> 00:14:45,120 DON'T KNOW IF SHE'LL BE JOINING 327 00:14:45,120 --> 00:14:47,560 FOR THAT EVENT OR NOT BUT I DO 328 00:14:47,560 --> 00:14:49,400 KNOW I'VE ALREADY HAD A LOVELY 329 00:14:49,400 --> 00:14:51,160 COVERING WITH HER PARTICULARLY 330 00:14:51,160 --> 00:14:51,800 BECAUSE SHE IS VERY INTERESTED 331 00:14:51,800 --> 00:15:02,360 IN STREAMLINING CLINIC CARE AND 332 00:15:02,880 --> 00:15:04,400 RESEARCH FOR CHILDREN WITH 333 00:15:04,400 --> 00:15:04,640 CANCER. 334 00:15:04,640 --> 00:15:06,520 I'M EXCITED SHE HAS THIS 335 00:15:06,520 --> 00:15:13,880 INTEREST IN PEDIATRIC CANCER AND 336 00:15:13,880 --> 00:15:17,880 FULLY WANTS TO INCLUDE NICHD IN 337 00:15:17,880 --> 00:15:21,280 THE OVER ALL MOON SHOT 338 00:15:21,280 --> 00:15:22,800 INITIATIVE SO CHILDREN WILL BE 339 00:15:22,800 --> 00:15:23,120 REPRESENTED. 340 00:15:23,120 --> 00:15:26,480 I LOOK FORWARD TO MEETING HER IN 341 00:15:26,480 --> 00:15:26,960 PERSON. 342 00:15:26,960 --> 00:15:31,160 WE ONLY HAVE SPOKEN ON 343 00:15:31,160 --> 00:15:31,480 TELEPHONE. 344 00:15:31,480 --> 00:15:34,240 THE BUDGET AND APPROPRIATION. 345 00:15:34,240 --> 00:15:37,440 FISCAL YEAR '23 BUDGET THAT HAS 346 00:15:37,440 --> 00:15:40,320 BEEN PROPOSED BY THE PRESIDENT 347 00:15:40,320 --> 00:15:47,480 PROPOSED $62.5 BILLION FOR NIH. 348 00:15:47,480 --> 00:15:53,200 IT HAS INCLUDES $1.68 BILLION 349 00:15:53,200 --> 00:15:53,880 FOR NICHD. 350 00:15:53,880 --> 00:15:56,120 IF YOU ARE REALLY PAYING 351 00:15:56,120 --> 00:15:57,440 ATTENTION YOU MIGHT KNOW THAT'S 352 00:15:57,440 --> 00:15:59,840 EXACTLY THE KIND OF BUDGET WE 353 00:15:59,840 --> 00:16:01,600 HAVE IN THE CURRENT FISCAL YEAR 354 00:16:01,600 --> 00:16:03,600 '22 BUDGET. 355 00:16:03,600 --> 00:16:06,640 BECAUSE OF THE WAY THE 356 00:16:06,640 --> 00:16:07,800 PRESIDENT'S BUDGET IS DEVELOPED 357 00:16:07,800 --> 00:16:15,120 AND THE CONGRESSIONAL 358 00:16:15,120 --> 00:16:15,760 JUSTIFICATION, THERE'S 359 00:16:15,760 --> 00:16:17,040 DISCONNECT ON TIMING. 360 00:16:17,040 --> 00:16:18,880 IT DOESN'T MEAN THE BUDGET WILL 361 00:16:18,880 --> 00:16:21,240 STAY FLAT. 362 00:16:21,240 --> 00:16:23,320 IT'S JUST THAT THIS IS WHAT WAS 363 00:16:23,320 --> 00:16:24,360 FORMALLY PUT INTO PLACE AND 364 00:16:24,360 --> 00:16:25,520 EXPECT THE NUMBER WILL BE HIGHER 365 00:16:25,520 --> 00:16:31,400 FOR NICHD. 366 00:16:31,400 --> 00:16:33,120 SEPTEMBER 30th IS A COUPLE WEEKS 367 00:16:33,120 --> 00:16:34,560 AWAY THE END OF OUR PHYSICAL 368 00:16:34,560 --> 00:16:35,840 YEAR. 369 00:16:35,840 --> 00:16:39,840 WE DO NOT HAVE ANY INFORMATION 370 00:16:39,840 --> 00:16:42,200 ABOUT FISCAL YEAR '23. 371 00:16:42,200 --> 00:16:43,840 WE KNOW CONGRESS HAS BEEN 372 00:16:43,840 --> 00:16:45,440 ACTIVELY WORKING ON THE FISCAL 373 00:16:45,440 --> 00:16:47,880 '23 BUDGET BUT IT'S A LONG WAY 374 00:16:47,880 --> 00:16:51,000 FROM BEING FINALIZED. 375 00:16:51,000 --> 00:16:55,920 WE THINK A CONTINUING RESOLUTION 376 00:16:55,920 --> 00:16:59,880 WHEREBY WE CONTINUE WORKING WITH 377 00:16:59,880 --> 00:17:02,480 AN EXPECTED FLAT BUDGET IF WE 378 00:17:02,480 --> 00:17:07,320 GET OUR OTHER BUDGET WILL OCCUR 379 00:17:07,320 --> 00:17:10,560 BUT THERE'S A POSSIBILITY OF A 380 00:17:10,560 --> 00:17:12,800 GOVERNMENT SHUTDOWN BECAUSE THEY 381 00:17:12,800 --> 00:17:13,840 HAVEN'T SIGNED THE CONTINUING 382 00:17:13,840 --> 00:17:14,160 RESOLUTION. 383 00:17:14,160 --> 00:17:15,560 I DON'T THINK ANYONE WANTS THE 384 00:17:15,560 --> 00:17:17,000 GOVERNMENT TO SHUTS DOWN 385 00:17:17,000 --> 00:17:23,880 ESPECIALLY PRIOR TO AN ELECTION 386 00:17:23,880 --> 00:17:27,560 CYC 387 00:17:27,560 --> 00:17:28,040 CYCLE. 388 00:17:28,040 --> 00:17:29,160 I DID WANT TO POINT OUT THIS 389 00:17:29,160 --> 00:17:34,560 YEAR THE BUDGET WAS SIGNED ON 390 00:17:34,560 --> 00:17:41,760 MARCH 15, WHAT THAT MEANS IS WE 391 00:17:41,760 --> 00:17:46,760 REALLY DON'T KNOW HOW MUCH 392 00:17:46,760 --> 00:17:51,440 BUDGET IS IN UNTIL MARCH AND THE 393 00:17:51,440 --> 00:17:52,840 IMPROVE INITIATIVE COULDN'T GET 394 00:17:52,840 --> 00:17:55,480 STARTED UNTIL MARCH UNTIL WE 395 00:17:55,480 --> 00:17:57,480 FOUND OUT WHETHER THE PROGRAM 396 00:17:57,480 --> 00:17:58,480 WILL BE APPROPRIATED. 397 00:17:58,480 --> 00:17:59,880 I THINK THIS IS SOMETHING I 398 00:17:59,880 --> 00:18:01,760 DIDN'T REALLY APPRECIATE UNTIL I 399 00:18:01,760 --> 00:18:05,040 JOINED NIH THE DIFFICULTIES 400 00:18:05,040 --> 00:18:06,720 PROGRAM STAFF HAVE IN TERMS OF 401 00:18:06,720 --> 00:18:08,200 JUGGLING BETWEEN WHAT IS KNOWN 402 00:18:08,200 --> 00:18:10,160 AND WHAT IS NOT KNOWN. 403 00:18:10,160 --> 00:18:13,400 WE REALLY WANT TO GIVE OUR KUDOS 404 00:18:13,400 --> 00:18:15,600 TO ALL OF OUR PROGRAM STAFF AND 405 00:18:15,600 --> 00:18:16,960 GRANTS MANAGEMENT STAFF WHO HAVE 406 00:18:16,960 --> 00:18:20,720 BEEN DEALING WITH THIS VERY 407 00:18:20,720 --> 00:18:26,320 SHORT TIME LINE IN THIS SPECIFIC 408 00:18:26,320 --> 00:18:29,880 FISCAL YEAR. 409 00:18:29,880 --> 00:18:30,960 ANOTHER THING THAT WAS PRESENT 410 00:18:30,960 --> 00:18:36,200 IN THE APPROPRIATIONS LANGUAGE 411 00:18:36,200 --> 00:18:43,640 WAS THAT NICHD WOULD ESTABLISH A 412 00:18:43,640 --> 00:18:45,440 TASK FORCE ON STILLBIRTH IN THE 413 00:18:45,440 --> 00:18:46,000 UNITED STATES. 414 00:18:46,000 --> 00:18:48,520 IT'S STILL A MAJOR PROBLEM AND 415 00:18:48,520 --> 00:18:50,720 AFFECTS 1 IN 160 PREGNANCIES AND 416 00:18:50,720 --> 00:18:56,000 THE RATE OF EARLY STILLBIRTHS IS 417 00:18:56,000 --> 00:18:59,120 STILL UNCHANGED AFTER 30 YEARS. 418 00:18:59,120 --> 00:19:03,920 WE ARE ESTABLISHING SUBCOMMITTEE 419 00:19:03,920 --> 00:19:07,160 OF THE NICHD COUNCIL, THAT'S ALL 420 00:19:07,160 --> 00:19:10,400 OF YOU, AND THOSE THAT WILL BE 421 00:19:10,400 --> 00:19:12,360 ASKED TO PARTICIPATE WILL BE 422 00:19:12,360 --> 00:19:16,760 RECEIVING ALET -- A LETTER SOON 423 00:19:16,760 --> 00:19:17,880 BUT THE MEMBERS WILL ALSO 424 00:19:17,880 --> 00:19:22,360 INCLUDE MEMBERS FROM THE CDC 425 00:19:22,360 --> 00:19:27,480 OTHER INSTITUTES AND CENTERS 426 00:19:27,480 --> 00:19:29,840 OUTSIDE NIH, THOSE IN MATERNAL 427 00:19:29,840 --> 00:19:31,240 MEDICINE AND GENOMICS. 428 00:19:31,240 --> 00:19:37,080 IT'S AN AREA THAT WASN'T REALLY 429 00:19:37,080 --> 00:19:40,080 FLOURISHING WHEN WE HAD OUR 430 00:19:40,080 --> 00:19:41,240 STILLBIRTH TASK FORCE IN THE 431 00:19:41,240 --> 00:19:43,280 PAST AND THE FUNDED INITIATIVE 432 00:19:43,280 --> 00:19:44,920 ON STILLBIRTH. 433 00:19:44,920 --> 00:19:48,120 THIS TIME WE'VE BEEN ASKED TO 434 00:19:48,120 --> 00:19:51,560 FOCUS ON NO-RISK FACTORS FOR 435 00:19:51,560 --> 00:19:52,360 STILLBIRTH, FACTORS IN 436 00:19:52,360 --> 00:19:56,240 COLLECTING DATA ON STILLBIRTHS 437 00:19:56,240 --> 00:19:56,760 IN THE UNITED STATES. 438 00:19:56,760 --> 00:19:59,840 FOCUS ON COMMUNITIES AT HIGHER 439 00:19:59,840 --> 00:20:05,400 RISK ON STILLBIRTH AND THE 440 00:20:05,400 --> 00:20:07,040 IMPACT ON MOTHERS FOLLOWING A 441 00:20:07,040 --> 00:20:08,280 STILLBIRTH. 442 00:20:08,280 --> 00:20:09,760 BASICALLY PEOPLE WILL GET THEIR 443 00:20:09,760 --> 00:20:11,880 LETTERS SOON AND THE MEETINGS 444 00:20:11,880 --> 00:20:22,440 WILL HAVE TO BE SOON AND WE CAN 445 00:20:25,800 --> 00:20:27,040 TALK ABOUT IT IN THE QUESTION 446 00:20:27,040 --> 00:20:27,560 AND ANSWER PERIOD. 447 00:20:27,560 --> 00:20:32,000 NOW I'D LIKE TO MENTION THE 448 00:20:32,000 --> 00:20:32,800 NICHD RACIAL AND EQUITY PLAN 449 00:20:32,800 --> 00:20:35,480 KNOWN AS THE REAP. 450 00:20:35,480 --> 00:20:38,040 THIS IS A MAJOR COMPONENT OF 451 00:20:38,040 --> 00:20:40,520 NIH'S UNITE PROGRAM. 452 00:20:40,520 --> 00:20:44,400 IT'S PART OF THE "I" COMMITTEE. 453 00:20:44,400 --> 00:20:51,040 WHERE THEY WERE U-N-I-T-E AND 454 00:20:51,040 --> 00:20:57,880 THIS IS THE "I" COMMITTEE FOR 455 00:20:57,880 --> 00:21:04,080 ACQUISITION, INCLUSION AND -- 456 00:21:04,080 --> 00:21:07,920 EQUITY, INCLUSION AND 457 00:21:07,920 --> 00:21:08,800 EXCELLENCE. 458 00:21:08,800 --> 00:21:10,560 WE RECENTLY HAVE FILLED OUT A 459 00:21:10,560 --> 00:21:11,360 DOCUMENT TO SHOW THE PROGRESS 460 00:21:11,360 --> 00:21:16,560 THAT HAS BEEN MADE IN TERMS OF 461 00:21:16,560 --> 00:21:19,720 THE IMPLEMENTATION PLAN AND THE 462 00:21:19,720 --> 00:21:24,320 REAP ACTIVITIES HAVE HELPED US 463 00:21:24,320 --> 00:21:26,720 IDENTIFY ADDITIONAL TARGETS AND 464 00:21:26,720 --> 00:21:29,640 PROGRAMS AND THIS IS UNIQUE TO 465 00:21:29,640 --> 00:21:34,760 NICHD. 466 00:21:34,760 --> 00:21:36,440 >> HERE ARE SOME OF THE 467 00:21:36,440 --> 00:21:39,200 ACTIVITIES WE'VE BEEN ABLE TO 468 00:21:39,200 --> 00:21:41,440 ACCOMPLISH DURING FISCAL YEAR 469 00:21:41,440 --> 00:21:41,760 '22. 470 00:21:41,760 --> 00:21:46,280 WE CONDUCTED A PULSE SURVEY OF 471 00:21:46,280 --> 00:21:48,400 THE NICHD CLIMATE AMONGST THE 472 00:21:48,400 --> 00:21:50,360 STAFF AND DISSEMINATED THE 473 00:21:50,360 --> 00:21:53,440 RESULTS IN A TOWN HALL MEETING 474 00:21:53,440 --> 00:21:56,920 LAST SPRING. 475 00:21:56,920 --> 00:21:59,120 WE'VE BEEN EXAMINING WORKFORCE 476 00:21:59,120 --> 00:22:00,400 DATA WITH DEMOGRAPHICS, EQUITY 477 00:22:00,400 --> 00:22:02,520 AND INCLUSION ACROSS ALL 478 00:22:02,520 --> 00:22:04,800 POSITIONS AN PAY GRADES AND 479 00:22:04,800 --> 00:22:05,880 PARTICULARLY EXAMINING, 480 00:22:05,880 --> 00:22:08,760 RECRUITMENT, RETENTION AND AWARD 481 00:22:08,760 --> 00:22:10,320 DATA FOR INSTITUTE EMPLOYEES 482 00:22:10,320 --> 00:22:11,760 BASED ON DEMOGRAPHICS. 483 00:22:11,760 --> 00:22:14,560 WE ARE ALSO ESTABLISHING 484 00:22:14,560 --> 00:22:15,200 TRAINING CURRICULA AND 485 00:22:15,200 --> 00:22:17,880 OPPORTUNITIES FOR DEVELOPMENT OF 486 00:22:17,880 --> 00:22:21,760 OUR OWN INSTITUTE PERSONNEL. 487 00:22:21,760 --> 00:22:24,520 AND SOMETHING WE HAD A LOT OF 488 00:22:24,520 --> 00:22:27,960 ABOUT IN THE PULSE SURVEY WAS 489 00:22:27,960 --> 00:22:30,720 PROVIDING OPPORTUNITIES FOR 490 00:22:30,720 --> 00:22:33,360 STAFF TO PROVIDE BASIC 491 00:22:33,360 --> 00:22:35,400 LEADERSHIP ENROLLED WITHIN AND 492 00:22:35,400 --> 00:22:37,440 OUTSIDE THE INSTITUTE IN AN OPEN 493 00:22:37,440 --> 00:22:40,560 AND TRANSPARENT FASHION. 494 00:22:40,560 --> 00:22:41,880 PREVIOUSLY, PEOPLE WERE 495 00:22:41,880 --> 00:22:44,240 RECOMMENDED FOR MEMBERSHIP ON 496 00:22:44,240 --> 00:22:46,800 COMMITTEES OR TRANS-NIH 497 00:22:46,800 --> 00:22:47,760 INITIATIVES AND NO ONE KNEW HOW 498 00:22:47,760 --> 00:22:53,920 THOSE PEOPLE WERE SELECTED. 499 00:22:53,920 --> 00:22:57,080 THERE'S AN OPEN VOLUNTEERING 500 00:22:57,080 --> 00:22:58,960 PROCESS AND EVERYTHING IS 501 00:22:58,960 --> 00:22:59,520 TRANSPARENT WITH AN EYE IN 502 00:22:59,520 --> 00:23:00,040 GIVING OPPORTUNITIES TO 503 00:23:00,040 --> 00:23:06,040 EVERYONE. 504 00:23:06,040 --> 00:23:08,280 THE NUMBERS FOR COVID CASES ARE 505 00:23:08,280 --> 00:23:09,400 COMING DOWN RIGHT NOW. 506 00:23:09,400 --> 00:23:10,880 WE'RE CERTAINLY NOT OUT OF THE 507 00:23:10,880 --> 00:23:13,720 PANDEMIC BUT WE MIGHT HAVE A 508 00:23:13,720 --> 00:23:17,240 LITTLE BIT OF A RESPITE OVER THE 509 00:23:17,240 --> 00:23:18,280 NEXT FEW MONTHS. 510 00:23:18,280 --> 00:23:21,680 NICHD STAFF ARE PARTICIPATING IN 511 00:23:21,680 --> 00:23:23,080 RECOVER WHICH YOU PROBABLY KNOW 512 00:23:23,080 --> 00:23:26,560 IS ESSENTIALLY THE LONG COVID 513 00:23:26,560 --> 00:23:28,280 NIH WIDE INITIATIVE OR COVER 514 00:23:28,280 --> 00:23:32,160 STANDS FOR RESEARCHING COVID TO 515 00:23:32,160 --> 00:23:32,560 ENHANCE RECOVERY. 516 00:23:32,560 --> 00:23:35,000 IT IS REALLY LOOKING AT THE 517 00:23:35,000 --> 00:23:38,120 LONG-TERM HEALTH EFFECTS OF 518 00:23:38,120 --> 00:23:38,720 COVID. 519 00:23:38,720 --> 00:23:41,440 AND IT'S AN OBSERVATIONAL STUDY 520 00:23:41,440 --> 00:23:44,760 WHICH MEANS THE RESEARCHERS HAVE 521 00:23:44,760 --> 00:23:45,760 ED INFORMATION FROM 522 00:23:45,760 --> 00:23:46,600 PARTICIPANTS. 523 00:23:46,600 --> 00:23:49,440 IT IS NOT AN INTERVENTION STUDY. 524 00:23:49,440 --> 00:23:54,920 WE'RE VERY GRATEFUL THE COVID 525 00:23:54,920 --> 00:23:57,040 LEADERSHIP ALLOWED US TO INCLUDE 526 00:23:57,040 --> 00:23:58,840 A WHOLE SEPARATE ARM ON 527 00:23:58,840 --> 00:24:00,160 PEDIATRIC COVID, PREGNANT PEOPLE 528 00:24:00,160 --> 00:24:04,680 ARE BEING INCLUDED IN THE ADULT 529 00:24:04,680 --> 00:24:08,080 INITIATIVE AND WE ARE CONSTANTLY 530 00:24:08,080 --> 00:24:10,680 REMINDING THE RECOVER STAFF THAT 531 00:24:10,680 --> 00:24:11,920 WE WANT TO INCLUDE PEOPLE WITH 532 00:24:11,920 --> 00:24:19,680 DISABILITIES AS WELL. 533 00:24:19,680 --> 00:24:21,440 HERE ARE SOME OF THE STUDY 534 00:24:21,440 --> 00:24:23,400 QUESTIONS AS THEY RELATE TO 535 00:24:23,400 --> 00:24:24,680 CHILDREN WITH LONG COVID. 536 00:24:24,680 --> 00:24:26,160 HOW MANY OF THEM ARE GETTING 537 00:24:26,160 --> 00:24:31,080 LONG COVID, WHY DO SOME GET IT 538 00:24:31,080 --> 00:24:32,840 AND OTHERS DO NOT. 539 00:24:32,840 --> 00:24:34,840 WHAT SYMPTOMS DO CHILDREN FEEL 540 00:24:34,840 --> 00:24:36,280 WHEN THEY GET LONG COVID. 541 00:24:36,280 --> 00:24:37,480 HOW LONG ARE THEY SICK WHEN THEY 542 00:24:37,480 --> 00:24:39,200 GET IT. 543 00:24:39,200 --> 00:24:41,480 WHAT ARE THE UNDERLYING CAUSES 544 00:24:41,480 --> 00:24:44,640 AND HOW DOES LONG COVID AFFECT 545 00:24:44,640 --> 00:24:45,920 LATER PHYSICAL HEALTH, MENTAL 546 00:24:45,920 --> 00:24:47,720 HEALTH AND DEVELOPMENT IN 547 00:24:47,720 --> 00:24:48,080 CHILDREN. 548 00:24:48,080 --> 00:24:49,080 THIS IS PARTICULARLY IN CHILDREN 549 00:24:49,080 --> 00:24:54,600 FOR THE PEOPLE WHO WERE PREGNANT 550 00:24:54,600 --> 00:24:58,800 WITH COVID THIS WILL BE A 551 00:24:58,800 --> 00:25:01,440 MECHANISM TO STUDY THEIR 552 00:25:01,440 --> 00:25:02,920 OFFSPRING IN THE WOMB DURING THE 553 00:25:02,920 --> 00:25:08,600 INFECTION AND HOW DO CONGENITAL 554 00:25:08,600 --> 00:25:11,680 EXPOSURE TO SARS COV2 INFECTION 555 00:25:11,680 --> 00:25:12,800 DURING PREGNANCY AFFECT CHILD 556 00:25:12,800 --> 00:25:13,320 PHYSICAL HEALTH AND CHILD 557 00:25:13,320 --> 00:25:23,560 DEVELOPMENT. 558 00:25:23,560 --> 00:25:25,520 THERE'S A BASELINE TIER THAT 559 00:25:25,520 --> 00:25:29,440 CONSISTS OF 19,500 DIADS. 560 00:25:29,440 --> 00:25:32,960 THERE IS A SECOND TIER WITH 561 00:25:32,960 --> 00:25:35,280 ACUTE FOLLOW-UP AT 2,4 AND 8 562 00:25:35,280 --> 00:25:35,480 WEEKS. 563 00:25:35,480 --> 00:25:38,360 THAT'S AROUND 800 DIADS. 564 00:25:38,360 --> 00:25:40,720 THERE'S A TIER 3, DEEP 565 00:25:40,720 --> 00:25:43,600 PHENOTYPING IN YEARS 1 AND 2. 566 00:25:43,600 --> 00:25:46,920 AROUND 600 AND POST-ACUTE 567 00:25:46,920 --> 00:25:49,440 LONGITUDINAL FOLLOW-UP AT 6, 12, 568 00:25:49,440 --> 00:25:53,440 24, 36 AND 48 MONTHS HOPING TO 569 00:25:53,440 --> 00:26:03,920 RECRUIT 6,000 PARTICIPANTS. 570 00:26:09,280 --> 00:26:13,160 THE STUDY ONLIED TO CREN -- 571 00:26:13,160 --> 00:26:17,960 ONLY OPENED IN APRIL AND THE 50% 572 00:26:17,960 --> 00:26:19,880 OF THE SITES WERE ACTIVATED AND 573 00:26:19,880 --> 00:26:22,320 I THINK THERE'S OVER 700 NOW. 574 00:26:22,320 --> 00:26:25,200 THEY HAD QUITE A WAYS TO GO TO 575 00:26:25,200 --> 00:26:35,600 GET 19,500 PARTICIPANTS. 576 00:26:39,760 --> 00:26:44,720 IF YOU GO TO RECOVER COVID.org 577 00:26:44,720 --> 00:26:46,560 YOU CAN GET MORE INFORMATION IF 578 00:26:46,560 --> 00:26:48,760 YOU KNOW ANYONE OF ANY AGE THAT 579 00:26:48,760 --> 00:26:50,760 CAN PARTICIPATE BUT FOR CHILDREN 580 00:26:50,760 --> 00:26:51,760 SPECIFICALLY THERE'S A SEPARATE 581 00:26:51,760 --> 00:27:02,320 ARM FOR CHILD HEALTH AND COVID. 582 00:27:07,160 --> 00:27:10,760 THE IMPROVE INITIATIVE IS 583 00:27:10,760 --> 00:27:11,800 BUILDING ON EFFORTS MULTIPLE 584 00:27:11,800 --> 00:27:13,160 INSTITUTES HAVE MADE SINCE A 585 00:27:13,160 --> 00:27:16,080 MEETING WE HAD WITH THE BLACK 586 00:27:16,080 --> 00:27:17,440 MATERNAL HEALTH CAUCUS IN 587 00:27:17,440 --> 00:27:20,560 DECEMBER OF 2019. 588 00:27:20,560 --> 00:27:22,400 FOR THE FIRST TWO FISCAL YEARS 589 00:27:22,400 --> 00:27:23,760 EACH INSTITUTE AS WELL AS THE 590 00:27:23,760 --> 00:27:26,920 OFFICE OF THE DIRECTOR 591 00:27:26,920 --> 00:27:29,320 CONTRIBUTED FUNDS THAT MAINLY 592 00:27:29,320 --> 00:27:31,280 SUPPORTED SUPPLEMENTS AND NOW 593 00:27:31,280 --> 00:27:35,480 WITH THE NEW APPROPRIATION OF 594 00:27:35,480 --> 00:27:37,040 $30 MILLION AND NICHD'S BASE 595 00:27:37,040 --> 00:27:38,320 BUDGET BEGINNING THIS YEAR WE 596 00:27:38,320 --> 00:27:40,040 WERE ABLE TO DO A LOT MORE. 597 00:27:40,040 --> 00:27:46,600 JUST AS A REMINDER, THE IMPROVE 598 00:27:46,600 --> 00:27:47,760 INITIATIVE IS NIH WIDE. 599 00:27:47,760 --> 00:27:49,680 THE FOCUS IS TO SUPPORT RESEARCH 600 00:27:49,680 --> 00:27:53,120 ON REDUCING PREVENTIBLE CAUSES 601 00:27:53,120 --> 00:27:56,880 OF MATERNAL DEATHS, REDUCING 602 00:27:56,880 --> 00:27:59,960 HEALTH DISPARITIES AND 603 00:27:59,960 --> 00:28:01,880 COMPLICATIONS IN 604 00:28:01,880 --> 00:28:04,240 DISPROPORTIONATELY AFFECTED 605 00:28:04,240 --> 00:28:05,440 POPULATIONS AND IMPROVING HEALTH 606 00:28:05,440 --> 00:28:09,800 OF WOMEN, BEFORE, DURING, AND 607 00:28:09,800 --> 00:28:12,760 IMPORTANTLY THE YEAR AFTER 608 00:28:12,760 --> 00:28:13,520 DELIVERY. 609 00:28:13,520 --> 00:28:15,800 WITH AN ENORMOUS AMOUNT OF 610 00:28:15,800 --> 00:28:17,960 EFFORT, STAFF ACROSS MULTIPLE 611 00:28:17,960 --> 00:28:23,000 INSTITUTES WERE ABLE TO GET THE 612 00:28:23,000 --> 00:28:24,760 FOLLOWING NEW INITIATIVES OFF 613 00:28:24,760 --> 00:28:28,440 THE GROUND AND SPEND THE $30 614 00:28:28,440 --> 00:28:29,280 MILLION. 615 00:28:29,280 --> 00:28:31,880 SO THE NOTICE OF SPECIAL 616 00:28:31,880 --> 00:28:34,800 INTERESTS ON DISSEMINATION AND 617 00:28:34,800 --> 00:28:35,960 IMPLEMENTATION RESEARCH RESULTED 618 00:28:35,960 --> 00:28:38,160 IN MULTIPLE APPLICATIONS THAT 619 00:28:38,160 --> 00:28:42,120 HAVE BEEN REVIEWED AND THERE IS 620 00:28:42,120 --> 00:28:52,600 A FUNDING PLAN IN PLACE NOW. 621 00:28:57,080 --> 00:28:58,160 AND STUDIES OF MATERNAL HEALTH 622 00:28:58,160 --> 00:29:02,920 INTERVENTIONS AND A FOCUS ON 623 00:29:02,920 --> 00:29:04,320 LONGITUDINAL HEALTH RECORD FOR 624 00:29:04,320 --> 00:29:05,200 THE PREGNANT PERSON AND CHILD 625 00:29:05,200 --> 00:29:07,200 AND LINKAGES FOR WOMEN, BEFORE 626 00:29:07,200 --> 00:29:13,040 PREGNANCY AND AFTER PREGNANCY. 627 00:29:13,040 --> 00:29:14,400 AND WE'VE USED NEW OPPORTUNITIES 628 00:29:14,400 --> 00:29:15,080 FOR THE CHALLENGE WHICH I'LL 629 00:29:15,080 --> 00:29:17,000 TALK ABOUT IN A MOMENT. 630 00:29:17,000 --> 00:29:18,480 THE CHALLENGE FUNDING MECHANISMS 631 00:29:18,480 --> 00:29:22,160 AND WHAT WE DECIDED TO DO WAS 632 00:29:22,160 --> 00:29:25,280 DELAY THE MATERNAL HEALTH 633 00:29:25,280 --> 00:29:28,480 CENTERS OF EXCELLENCE TO FISCAL 634 00:29:28,480 --> 00:29:29,680 YEAR '23. 635 00:29:29,680 --> 00:29:32,280 THE GOAL WAS TO USE THE CURRENT 636 00:29:32,280 --> 00:29:34,240 MONEY BECAUSE WE COULD ONLY 637 00:29:34,240 --> 00:29:36,720 ESTABLISH THE INITIATIVES IN 638 00:29:36,720 --> 00:29:38,240 MARCH AND THE NOTICES HAD TO GO 639 00:29:38,240 --> 00:29:40,080 OUT, PEOPLE HAD TO APPLY, THEY 640 00:29:40,080 --> 00:29:42,000 HAD TO BE REVIEWED, FUNDING 641 00:29:42,000 --> 00:29:44,400 PLANS HAD TO BE ESTABLISHED ALL 642 00:29:44,400 --> 00:29:45,480 WITHIN A PERIOD OF ABOUT SIX 643 00:29:45,480 --> 00:29:47,040 MONTHS OR LESS THAN SIX MONTHS. 644 00:29:47,040 --> 00:29:50,560 SO WE DIDN'T WANT TO RUSH THE 645 00:29:50,560 --> 00:29:52,840 MATERNAL HEALTH CENTERS 646 00:29:52,840 --> 00:29:53,160 EXCELLENCE. 647 00:29:53,160 --> 00:29:55,360 ALL THESE INITIATIVES WERE 648 00:29:55,360 --> 00:29:57,040 INTENDED TO GIVE US INFORMATION 649 00:29:57,040 --> 00:29:59,680 THAT THEN COULD BE USED FOR THE 650 00:29:59,680 --> 00:30:02,200 CENTERS OF EXCELLENCE WITH AGAIN 651 00:30:02,200 --> 00:30:05,440 A SPECIFIC EMPHASIS ON 652 00:30:05,440 --> 00:30:06,600 COMMUNITY-BASED EFFORTS TO 653 00:30:06,600 --> 00:30:09,320 ADDRESS LOCAL SOLUTIONS THAT 654 00:30:09,320 --> 00:30:10,680 WOULD HAVE A LOCAL AFFECT 655 00:30:10,680 --> 00:30:11,160 ESPECIALLY ON HEALTH 656 00:30:11,160 --> 00:30:21,360 DISPARITIES. 657 00:30:22,720 --> 00:30:23,960 YOU PROBABLY HAVEN'T HEARD WE 658 00:30:23,960 --> 00:30:25,680 TALK ABOUT CHALLENGES AND WE 659 00:30:25,680 --> 00:30:28,360 SUCCESSFULLY COMPLETED OUR FIRST 660 00:30:28,360 --> 00:30:31,160 CHALLENGE THIS FISCAL YEAR 661 00:30:31,160 --> 00:30:34,160 THOUGH NIH CONDUCTED OVER ALL 62 662 00:30:34,160 --> 00:30:36,120 CHALLENGES OVER THE PAST DECADE 663 00:30:36,120 --> 00:30:37,280 OR SO. 664 00:30:37,280 --> 00:30:38,080 . 665 00:30:38,080 --> 00:30:39,840 WHAT ARE CHALLENGES? 666 00:30:39,840 --> 00:30:43,560 THEY'RE A WAY FOR FEDERAL 667 00:30:43,560 --> 00:30:45,480 AGENCIES TO CROWD SOURCE AND 668 00:30:45,480 --> 00:30:47,720 ENGAGE PUBLIC INNOVATORS 669 00:30:47,720 --> 00:30:48,800 DIRECTLY TO FIND INTERESTING 670 00:30:48,800 --> 00:30:50,240 IDEAS OR SOLUTION TO IMPORTANT 671 00:30:50,240 --> 00:30:50,760 PROBLEMS. 672 00:30:50,760 --> 00:30:53,480 THEY'RE NOT THE TYPICAL ACADEMIC 673 00:30:53,480 --> 00:30:53,960 INVESTIGATORS. 674 00:30:53,960 --> 00:30:59,160 THIS IS JUST PUBLIC SO ANYBODY 675 00:30:59,160 --> 00:31:01,160 CAN RESPOND AND WE CAN OFFER 676 00:31:01,160 --> 00:31:09,000 MONETARY AND NON-MONETARY 677 00:31:09,000 --> 00:31:10,440 BENEFITS TO COMPETITION 678 00:31:10,440 --> 00:31:12,840 CANDIDATES AND OFFICIALS, 679 00:31:12,840 --> 00:31:13,480 NETWORKING, OPPORTUNITIES TO 680 00:31:13,480 --> 00:31:17,480 SPEAK AT A CONFERENCE TO 681 00:31:17,480 --> 00:31:19,400 HIGHLIGHT THE INNOVATION. 682 00:31:19,400 --> 00:31:20,560 THE BENEFITS TO US OF THE 683 00:31:20,560 --> 00:31:21,680 CHALLENGE INCLUDE THE FOLLOWING, 684 00:31:21,680 --> 00:31:25,080 THERE'S NO OBLIGATION OF AN 685 00:31:25,080 --> 00:31:25,320 AWARD. 686 00:31:25,320 --> 00:31:29,080 WE PAY A PRIZE, ESSENTIALLY FOR 687 00:31:29,080 --> 00:31:31,600 A WINNING SOLUTION OR SOLUTIONS 688 00:31:31,600 --> 00:31:31,840 ONLY. 689 00:31:31,840 --> 00:31:36,920 THERE CAN BE MANY POSSIBLE 690 00:31:36,920 --> 00:31:38,600 SOLUTIONS SO WE CAN ENCOURAGE 691 00:31:38,600 --> 00:31:40,560 CREATIVE SOLUTIONS AND THIS 692 00:31:40,560 --> 00:31:43,920 CREATES A BROADER POOL OF 693 00:31:43,920 --> 00:31:45,440 ENTRANTS TO INCREASE THE NUMBER 694 00:31:45,440 --> 00:31:48,240 AND DIVERSITY SOLVERS AND RAISES 695 00:31:48,240 --> 00:31:50,440 AWARENESS OF A PARTICULAR PUBLIC 696 00:31:50,440 --> 00:31:53,360 HEALTH NEED AND ENCOURAGES 697 00:31:53,360 --> 00:31:55,160 APPLICATION OF EXISTING NIH 698 00:31:55,160 --> 00:31:56,600 RESEARCH DATA TO ADDRESS PUBLIC 699 00:31:56,600 --> 00:32:00,680 HEALTH OR MEDICAL ISSUES. 700 00:32:00,680 --> 00:32:01,720 IT ALSO STIMULATES PUBLIC SECTOR 701 00:32:01,720 --> 00:32:11,200 INVESTMENT. 702 00:32:11,200 --> 00:32:13,000 IT'S CRITICAL FOR US TO ENGAGE 703 00:32:13,000 --> 00:32:18,440 THE COMMUNITY TO IMPROVE 704 00:32:18,440 --> 00:32:19,080 MATERNAL HEALTH. 705 00:32:19,080 --> 00:32:20,240 ONE CHALLENGE FOCUSES ON 706 00:32:20,240 --> 00:32:22,720 ENGAGING THE COMMUNITY. 707 00:32:22,720 --> 00:32:25,480 THIS ENCOURAGING COMMUNITY-BASED 708 00:32:25,480 --> 00:32:29,480 AND ADVOCACY ORGANIZATIONS IN 709 00:32:29,480 --> 00:32:33,040 THE U.S. TO DEVELOP THE 710 00:32:33,040 --> 00:32:34,360 INFRASTRUCTURE AND CAPABILITIES 711 00:32:34,360 --> 00:32:35,840 NECESSARY TO CONDUCT MATERNAL 712 00:32:35,840 --> 00:32:37,360 HEALTH RESEARCH. 713 00:32:37,360 --> 00:32:38,520 INTERESTING, THERE'S NO 714 00:32:38,520 --> 00:32:39,400 REQUIREMENT TO PARTNER WITH AN 715 00:32:39,400 --> 00:32:43,680 ACADEMIC INSTITUTION. 716 00:32:43,680 --> 00:32:45,200 THERE'S A TOTAL PRIZE PURSE OF 717 00:32:45,200 --> 00:32:48,000 $3 MILLION TO BE DISTRIBUTED 718 00:32:48,000 --> 00:32:56,760 ACROSS MULTIPLE PHASES. 719 00:32:56,760 --> 00:32:58,520 THERE'S DIFFERENT PHASES WHERE 720 00:32:58,520 --> 00:33:00,240 GROUP WILL APPLY AND GET 721 00:33:00,240 --> 00:33:01,400 SUBSEQUENT SUPPORT WITH THEIR 722 00:33:01,400 --> 00:33:03,440 APPLICATION AND GET AN INITIAL 723 00:33:03,440 --> 00:33:06,000 PRIZE POOL OF MONEY TO HELP WITH 724 00:33:06,000 --> 00:33:12,000 SUBSEQUENT ASPECTS OF THEIR 725 00:33:12,000 --> 00:33:19,840 APPLICATION AND NON-MONETARY 726 00:33:19,840 --> 00:33:21,040 ASSISTANTS AND WRITING SUPPORT 727 00:33:21,040 --> 00:33:22,080 AND RESEARCH ACTIVITY. 728 00:33:22,080 --> 00:33:24,040 THIS IS WHERE IT'S IMPORTANT 729 00:33:24,040 --> 00:33:26,640 BECAUSE WE WANT TO GET AT THE 730 00:33:26,640 --> 00:33:33,080 GRASSROOTS AND GET DIRECTLY INTO 731 00:33:33,080 --> 00:33:34,080 THE COMMUNITIES THAT MAY NOT 732 00:33:34,080 --> 00:33:35,040 HAVE THE SUPPORT THAT ARE 733 00:33:35,040 --> 00:33:36,160 AVAILABLE IN ACADEMIC 734 00:33:36,160 --> 00:33:43,080 INSTITUTIONS. 735 00:33:43,080 --> 00:33:53,480 HERE'S THE ANNOUNCEMENT. 736 00:33:53,880 --> 00:33:56,720 AND PLEASE GO TO THE 737 00:33:56,720 --> 00:33:57,280 ANNOUNCEMENT AND SUBMISSION 738 00:33:57,280 --> 00:34:04,480 PORTAL. 739 00:34:04,480 --> 00:34:07,400 WE HAVE TWO CHALLENGES AS PART 740 00:34:07,400 --> 00:34:11,560 OF THE IMPROVE INITIATIVE. 741 00:34:11,560 --> 00:34:13,800 THE RADX PORTAL WAS SO 742 00:34:13,800 --> 00:34:19,320 SUCCESSFUL FOR THE DEVELOPMENT 743 00:34:19,320 --> 00:34:21,440 OF TESTING. 744 00:34:21,440 --> 00:34:23,680 MOST DON'T RECOGNIZE WHEN YOU DO 745 00:34:23,680 --> 00:34:25,520 A SELF-TEST FOR COVID ALMOST ALL 746 00:34:25,520 --> 00:34:30,440 THAT TECHNOLOGY WAS DEVELOPED BY 747 00:34:30,440 --> 00:34:31,160 NIH. 748 00:34:31,160 --> 00:34:36,240 AND NIBIB PLAGE A HUGE ROLE IN 749 00:34:36,240 --> 00:34:36,840 IMPLEMENTING THAT TECHNOLOGY. 750 00:34:36,840 --> 00:34:38,240 WE THOUGHT IT WAS SO SUCCESSFUL 751 00:34:38,240 --> 00:34:43,080 IN THE WAY IT WAS ORGANIZED AND 752 00:34:43,080 --> 00:34:44,120 FELT IT WOULD ADDRESS A 753 00:34:44,120 --> 00:34:46,680 PARTICULAR CHALLENGE WE HAD WITH 754 00:34:46,680 --> 00:34:48,360 WOMEN IN THE SO-CALLED MATERNITY 755 00:34:48,360 --> 00:34:52,040 CARE DESERTS WHO ARE IN REGIONS 756 00:34:52,040 --> 00:34:53,440 THAT LACK ACCESS TO MATERNAL 757 00:34:53,440 --> 00:34:54,000 CARE. 758 00:34:54,000 --> 00:34:59,400 HOW CAN YOU MONITOR THESE PEOPLE 759 00:34:59,400 --> 00:35:00,880 WHO ARE PREGNANT WHO DON'T HAVE 760 00:35:00,880 --> 00:35:03,640 ACCESS TO CARE AND CONNECT THEM 761 00:35:03,640 --> 00:35:05,440 WITH THE APPROPRIATE SPECIALIST. 762 00:35:05,440 --> 00:35:09,440 THE MATERNAL HEALTH CHALLENGE 763 00:35:09,440 --> 00:35:11,880 PRIORITIZES HOME-BASED OR POINT 764 00:35:11,880 --> 00:35:13,120 OF CARE WEARABLES LIKE A FIT BIT 765 00:35:13,120 --> 00:35:15,360 AND OTHER DEVICES AND OTHER 766 00:35:15,360 --> 00:35:20,520 REMOTE SENSING TECHNOLOGIES TO 767 00:35:20,520 --> 00:35:24,840 EXTEND THE POSTPARTUM CARE AND 768 00:35:24,840 --> 00:35:30,800 THERE WERE CONCERNS IN TERMS OF 769 00:35:30,800 --> 00:35:41,360 APPROVAL AND CAN HAVE AN IMPACT 770 00:35:46,880 --> 00:35:52,320 ON POSTPARTUM MYOPATHY FOR 771 00:35:52,320 --> 00:35:54,000 PEOPLE IN THE HEALTH DESERTS. 772 00:35:54,000 --> 00:35:58,360 WE HAVE PRIZES AWARDED THROUGH 773 00:35:58,360 --> 00:35:59,080 SEVERAL PHASES AGAIN. 774 00:35:59,080 --> 00:36:00,960 HERE'S THE CHALLENGE 775 00:36:00,960 --> 00:36:01,320 ANNOUNCEMENT. 776 00:36:01,320 --> 00:36:05,440 THIS ONE WILL OPEN THIS WEEK 777 00:36:05,440 --> 00:36:06,640 THERE'S A BIT MORE TIME FOR THE 778 00:36:06,640 --> 00:36:11,040 SUBMISSION DEADLINE IN NOVEMBER. 779 00:36:11,040 --> 00:36:15,280 THE MONEY HAS BEEN SET ASIDE AND 780 00:36:15,280 --> 00:36:15,840 WE'RE ANXIOUS TO AWARD THAT 781 00:36:15,840 --> 00:36:21,440 MONEY. 782 00:36:21,440 --> 00:36:24,320 FOR FISCAL YEAR '23 THE VISION 783 00:36:24,320 --> 00:36:28,640 IS TO FUND SEVERAL MATERNAL 784 00:36:28,640 --> 00:36:32,160 RESEARCH CENTERS OF EXCELLENCE. 785 00:36:32,160 --> 00:36:33,440 THERE WASN'T ENOUGH TIME TO GET 786 00:36:33,440 --> 00:36:38,440 THE FUNDING OPPORTUNITY 787 00:36:38,440 --> 00:36:49,000 ANNOUNCEMENT OUT AND WE CAN GET 788 00:36:51,280 --> 00:36:53,280 THEM REVIEWED IN THIS FISCAL 789 00:36:53,280 --> 00:36:54,000 YEAR. 790 00:36:54,000 --> 00:36:56,680 WE DIDN'T WANT TO 791 00:36:56,680 --> 00:36:59,960 DISPROPORTIONATELY GIVE AN 792 00:36:59,960 --> 00:37:01,040 ADVANTAGE TO INSTITUTIONS THAT 793 00:37:01,040 --> 00:37:02,520 ARE HEAVILY RESOURCED THAT CAN 794 00:37:02,520 --> 00:37:04,400 MOVE THE NEEDLE VERY QUICKLY. 795 00:37:04,400 --> 00:37:11,840 THAT'S WHY WE DECIDED TO WAIT 796 00:37:11,840 --> 00:37:15,600 UNTIL AND THE GOAL IS TO 797 00:37:15,600 --> 00:37:17,200 SIGNIFICANTLY REDUCE MATERNAL 798 00:37:17,200 --> 00:37:18,880 MORBIDITY AND DECREASE 799 00:37:18,880 --> 00:37:21,240 PREVENTIBLE MORTALITY BY 800 00:37:21,240 --> 00:37:22,280 PARTNERING WITH THE COMMUNITIES 801 00:37:22,280 --> 00:37:23,920 AFFECTED AND INCORPORATING THEIR 802 00:37:23,920 --> 00:37:26,400 NEEDS AND PERSPECTIVES IN THE 803 00:37:26,400 --> 00:37:29,480 MATERNAL HEALTH PERFORMED BY THE 804 00:37:29,480 --> 00:37:36,000 CENTERS OF EXCELLENCE. 805 00:37:36,000 --> 00:37:37,520 THERE'LL BE SEVERAL RESEARCH 806 00:37:37,520 --> 00:37:41,360 CENTERS WITH A COORDINATING HUB 807 00:37:41,360 --> 00:37:41,880 AS WELL AS IMPLEMENTATION 808 00:37:41,880 --> 00:37:46,080 SCIENCE RESOURCE HUB. 809 00:37:46,080 --> 00:37:54,000 WE DO SEE A NETWORK OF MULTIPLE 810 00:37:54,000 --> 00:37:56,640 COMMUNITY SITES. 811 00:37:56,640 --> 00:37:58,840 AND THE RESEARCH PROJECTS WILL 812 00:37:58,840 --> 00:38:02,560 HAVE A TRAINING COMPONENT TO 813 00:38:02,560 --> 00:38:05,440 EXPAND THE CADRE OF RESEARCHERS 814 00:38:05,440 --> 00:38:07,720 IN MATERNAL HEALTH. 815 00:38:07,720 --> 00:38:12,000 WE'LL INSIST ON COMMON DATA 816 00:38:12,000 --> 00:38:14,800 ELEMENTS AND MODELS AND HAVE 817 00:38:14,800 --> 00:38:16,320 STRUCTURES COLLECTED ACROSS THE 818 00:38:16,320 --> 00:38:16,960 STRUCTURES ACROSS THE COMMON 819 00:38:16,960 --> 00:38:20,600 DATA HUB AND THE IMPLEMENTATION 820 00:38:20,600 --> 00:38:21,520 SCIENCE RESEARCH HUB WILL 821 00:38:21,520 --> 00:38:25,480 PROVIDE EXPERTISE TO ALL THE 822 00:38:25,480 --> 00:38:27,360 RESEARCH CENTERS TO BETTER 823 00:38:27,360 --> 00:38:28,080 UNDERSTAND HOW EVIDENCE-BASED 824 00:38:28,080 --> 00:38:29,480 RESEARCH CAN BE TRANSLATED TO 825 00:38:29,480 --> 00:38:39,960 MORE EQUITABLE CARE MODELS. 826 00:38:44,400 --> 00:38:48,000 WE EXPECT THE MAJORITY OF 827 00:38:48,000 --> 00:38:49,360 FUNDING IN FISCAL YEAR 23 WILL 828 00:38:49,360 --> 00:38:53,200 BE CENTERED AROUND THE CENTERS 829 00:38:53,200 --> 00:38:56,920 OF EXCELLENCE. 830 00:38:56,920 --> 00:39:00,000 THE IMPROVE INITIATIVE IS BASED 831 00:39:00,000 --> 00:39:02,400 ON THE $30 MILLION BUDGET BUT IN 832 00:39:02,400 --> 00:39:05,800 NICHD'S BASE BUT THE MONEY IS 833 00:39:05,800 --> 00:39:06,480 DISTRIBUTED ACROSS MULTIPLE 834 00:39:06,480 --> 00:39:07,720 INSTITUTES AND CENTERS. 835 00:39:07,720 --> 00:39:11,520 IT'S NOT THE ONLY MONEY DEVOTED 836 00:39:11,520 --> 00:39:13,120 TO RESEARCH IN MATERNAL HEALTH. 837 00:39:13,120 --> 00:39:17,120 WE HAD OVER $400 MILLION IN 838 00:39:17,120 --> 00:39:18,200 TOTAL IN NIH SPENDING ON 839 00:39:18,200 --> 00:39:28,480 MATERNAL HEALTH. 840 00:39:38,560 --> 00:39:41,440 I WANTED TO REMIND EVERYONE IT'S 841 00:39:41,440 --> 00:39:43,680 A CENTRALIZED RESOURCE FOR 842 00:39:43,680 --> 00:39:46,120 RESEARCHERS TO SHARE 843 00:39:46,120 --> 00:39:48,000 DEIDENTIFIED DATA SETS FROM 844 00:39:48,000 --> 00:39:49,720 STUDIES FUNDED BY NICHD. 845 00:39:49,720 --> 00:39:52,760 IT SERVES AS A PORTAL FOR 846 00:39:52,760 --> 00:39:58,360 REQUESTING BIO SPECIMENS FROM 847 00:39:58,360 --> 00:40:02,320 SELECTED STUDIES YOU CAN SEE 848 00:40:02,320 --> 00:40:03,960 TOPICS INCLUDED IN THE DASH AS 849 00:40:03,960 --> 00:40:06,120 WELL AS CURRENTLY AVAILABLE BIO 850 00:40:06,120 --> 00:40:06,760 SPECIMENS. 851 00:40:06,760 --> 00:40:10,320 THE ULTIMATE GOAL IS TO 852 00:40:10,320 --> 00:40:13,240 ACCELERATE SCIENTIFIC FINDINGS 853 00:40:13,240 --> 00:40:16,800 TO ULTIMATELY IMPROVE HUMAN 854 00:40:16,800 --> 00:40:17,440 HEALTH. 855 00:40:17,440 --> 00:40:20,400 IF YOU TYPE IN THE GOOGLE DASH 856 00:40:20,400 --> 00:40:21,760 NICHD IT WILL COME UP RIGHT 857 00:40:21,760 --> 00:40:22,520 AWAY. 858 00:40:22,520 --> 00:40:25,520 IT'S BEEN ENORMOUSLY SUCCESSFUL 859 00:40:25,520 --> 00:40:27,560 AND A FANTASTIC OPPORTUNITY FOR 860 00:40:27,560 --> 00:40:29,440 TRAINEES TO DEVELOP HYPOTHESES 861 00:40:29,440 --> 00:40:40,000 AND TEST THEM WITH ACTUAL DATA. 862 00:40:43,360 --> 00:40:44,880 I WANTED TO HIGHLIGHT ONE STUDY 863 00:40:44,880 --> 00:40:47,960 THAT'S BEEN OUR MOST REQUESTED 864 00:40:47,960 --> 00:40:50,520 STUDY WHICH IS CONSORTIUM ON 865 00:40:50,520 --> 00:40:56,200 SAFE LABOR OR CSL. 866 00:40:56,200 --> 00:41:05,440 THIS STUDY IN DELIVERIES FROM 19 867 00:41:05,440 --> 00:41:07,120 HOSPITALS ACROSS THE UNITED 868 00:41:07,120 --> 00:41:09,440 STATES OVER THE YEARS 2002 TO 869 00:41:09,440 --> 00:41:18,560 2008. 870 00:41:18,560 --> 00:41:21,360 THEY WERE RELEASED IN 2016. 871 00:41:21,360 --> 00:41:27,440 IT'S OUR MOST POPULAR DATA ABOUT 872 00:41:27,440 --> 00:41:32,240 A THIRD OF REQUESTS ARE ON THE 873 00:41:32,240 --> 00:41:34,680 DATA SET. 874 00:41:34,680 --> 00:41:41,440 FROM 194 TOTAL AND THERE'S BEEN 875 00:41:41,440 --> 00:41:43,800 39 PUBLICATIONS USING SO 876 00:41:43,800 --> 00:41:48,360 SECONDARY ANALYSES. 877 00:41:48,360 --> 00:41:51,280 ALMOST HALF OF ALL THE 878 00:41:51,280 --> 00:41:52,200 PUBLICATIONS ASSOCIATED WITH 879 00:41:52,200 --> 00:41:53,680 DASH REQUESTS ARE COMING FROM 880 00:41:53,680 --> 00:41:56,640 THIS PARTICULAR DATA SET. 881 00:41:56,640 --> 00:42:00,000 THIS JUST SORT OF CAME ACROSS MY 882 00:42:00,000 --> 00:42:01,920 ROUTINE PUB MED SEARCHS. 883 00:42:01,920 --> 00:42:07,560 A NEW PAPER THAT'S JUST OUT WITH 884 00:42:07,560 --> 00:42:11,600 THE TITLE OF MATERNAL AND 885 00:42:11,600 --> 00:42:15,000 NEONATAL OUTCOMES OF LABOR AND 886 00:42:15,000 --> 00:42:16,600 THEY USE MACHINE LEARNING AND 887 00:42:16,600 --> 00:42:18,000 RISK PROGRESSION MODELS ON 888 00:42:18,000 --> 00:42:18,240 OUTCOMES. 889 00:42:18,240 --> 00:42:22,600 THEY USE THESE TO PROMOTE 890 00:42:22,600 --> 00:42:23,920 INDIVIDUALIZED CLINICAL 891 00:42:23,920 --> 00:42:25,440 DECISIONS USING BASELINE AND 892 00:42:25,440 --> 00:42:27,680 LABOR CHARACTERISTICS OF 893 00:42:27,680 --> 00:42:27,920 EDUCATION. 894 00:42:27,920 --> 00:42:31,680 AGAIN, THEY NEVER USED THEIR OWN 895 00:42:31,680 --> 00:42:31,920 PATIENTS. 896 00:42:31,920 --> 00:42:33,240 THIS PARTICULAR STUDY IS FROM 897 00:42:33,240 --> 00:42:34,400 THE MAYO CLINIC. 898 00:42:34,400 --> 00:42:37,160 THEY DID ALL THEIR MODELLING 899 00:42:37,160 --> 00:42:38,760 BASED ON THE DASH DATA SET. 900 00:42:38,760 --> 00:42:40,520 I'D LIKE TO MENTION BECAUSE 901 00:42:40,520 --> 00:42:42,080 SEPTEMBER MEETING IS THE ONE 902 00:42:42,080 --> 00:42:47,720 THAT FOCUSES ON OUR INTRAMURAL 903 00:42:47,720 --> 00:42:48,400 RESEARCH PROGRAM. 904 00:42:48,400 --> 00:42:50,200 WE HAVE INTRAMURAL RESEARCHERS 905 00:42:50,200 --> 00:42:53,040 IN THE DIVISION OF INTRAMURAL 906 00:42:53,040 --> 00:42:54,040 POPULATION HEALTH RESEARCH USING 907 00:42:54,040 --> 00:42:55,800 THE CSL DATA SET AND MACHINE 908 00:42:55,800 --> 00:42:59,720 LEARNING METHODS TO IDENTIFY 909 00:42:59,720 --> 00:43:05,440 RISK FACTORS FOR PROLONGED 910 00:43:05,440 --> 00:43:15,760 SECOND-STAGE LABOR. 911 00:43:20,560 --> 00:43:23,680 I WANTED TO REMIND EVERYONE 912 00:43:23,680 --> 00:43:25,720 ABOUT THE NIH CLINICAL CENTER. 913 00:43:25,720 --> 00:43:28,640 IT'S AN OLDER PHOTOGRAPH SHOWN 914 00:43:28,640 --> 00:43:29,400 HERE. 915 00:43:29,400 --> 00:43:30,000 IT'S IN THE CENTER OF THE NIH 916 00:43:30,000 --> 00:43:34,080 CAMPUS. 917 00:43:34,080 --> 00:43:35,560 IT'S THE LARGEST RESEARCH 918 00:43:35,560 --> 00:43:36,920 HOSPITAL IN THE WORLD. 919 00:43:36,920 --> 00:43:38,520 ANYONE WHO COMES IN IS 920 00:43:38,520 --> 00:43:40,720 PARTICIPATING IN A RESEARCH 921 00:43:40,720 --> 00:43:41,000 PROTOCOL. 922 00:43:41,000 --> 00:43:43,720 THERE'S CURRENTLY ABOUT 1600 923 00:43:43,720 --> 00:43:45,280 ACTIVE RESEARCH STUDIES AND 924 00:43:45,280 --> 00:43:48,240 ABOUT HALF OF THEM ARE ON THE 925 00:43:48,240 --> 00:43:51,040 NATURAL HISTORY OF DISEASE 926 00:43:51,040 --> 00:43:53,440 ESPECIALLY RARE AND OFTEN 927 00:43:53,440 --> 00:43:54,040 GENETIC DISEASES. 928 00:43:54,040 --> 00:43:57,320 MOST OF THE OTHER STUDIES ARE ON 929 00:43:57,320 --> 00:44:01,880 CLINICAL TRIALS OFTEN 930 00:44:01,880 --> 00:44:03,120 FIRST-IN-HUMAN STUDIES DRUGS AND 931 00:44:03,120 --> 00:44:03,400 THERAPIES. 932 00:44:03,400 --> 00:44:09,480 ONE OF THE THINGS I REALLY 933 00:44:09,480 --> 00:44:10,640 APPRECIATE ABOUT THE CLINICAL 934 00:44:10,640 --> 00:44:16,160 CENTER BEING AN INVESTIGATOR 935 00:44:16,160 --> 00:44:17,520 THERE'S OPPORTUNITY FOR RESEARCH 936 00:44:17,520 --> 00:44:17,760 EQUITY. 937 00:44:17,760 --> 00:44:20,680 FOR MANY STUDIES, WE INCLUDING 938 00:44:20,680 --> 00:44:23,640 MINES, WE ARE ABLE TO PAY FOR 939 00:44:23,640 --> 00:44:25,480 TRANSPORTATION AND LODGING COSTS 940 00:44:25,480 --> 00:44:30,680 FOR ANYBODY WHO PARTICIPATES IN 941 00:44:30,680 --> 00:44:36,800 OUR RESEARCH STUDY. 942 00:44:36,800 --> 00:44:41,480 THERE'S NO INFORMATION REQUIRED 943 00:44:41,480 --> 00:44:43,160 FROM HEALTH CARE INSURANCE ALL 944 00:44:43,160 --> 00:44:45,640 THE SERVICES ARE AT NO COST TO 945 00:44:45,640 --> 00:44:52,520 THE PARTICIPANT. 946 00:44:52,520 --> 00:44:54,040 WHAT WE DON'T HAVE IS A 947 00:44:54,040 --> 00:44:58,960 STRATEGIC PLAN FOR PEDIATRIC 948 00:44:58,960 --> 00:45:01,400 RESEARCH AND BEING AND BEING ON 949 00:45:01,400 --> 00:45:06,920 THE GOVERNING BOARD I WAS ASKED 950 00:45:06,920 --> 00:45:08,240 TO CO-LEAD STRATEGIC PLANNING 951 00:45:08,240 --> 00:45:18,640 EFFORT FOR THE EFFORT 952 00:45:29,200 --> 00:45:34,160 PEDIATRIC RESEARCH AND HAVE 953 00:45:34,160 --> 00:45:44,640 PLANNING FOR IS WE HAVE 15 954 00:45:49,280 --> 00:45:53,440 PEOPLE WHO ARE CLINICAL 955 00:45:53,440 --> 00:45:54,120 INVESTIGATORS KNOWLEDGEABLE IN 956 00:45:54,120 --> 00:45:54,800 PEDIATRICS AND WHAT IS CURRENTLY 957 00:45:54,800 --> 00:45:58,120 GOING ON. 958 00:45:58,120 --> 00:45:59,480 THE CURRENT WAY PEDIATRIC 959 00:45:59,480 --> 00:46:02,760 RESEARCH IS DONE IS AN 960 00:46:02,760 --> 00:46:04,160 INDIVIDUAL INVESTIGATOR REQUESTS 961 00:46:04,160 --> 00:46:04,440 RESOURCES. 962 00:46:04,440 --> 00:46:05,040 THERE'S NO OVER ALL STRATEGIC 963 00:46:05,040 --> 00:46:15,160 PLAN. 964 00:46:15,480 --> 00:46:18,040 THERE ARE OVER 250 CREDENTIALS 965 00:46:18,040 --> 00:46:20,880 PEDIATRICIAN WHO'S HAVE 966 00:46:20,880 --> 00:46:22,160 PRIVILEGES AT THE CLINICAL 967 00:46:22,160 --> 00:46:23,560 CENTER. 968 00:46:23,560 --> 00:46:28,320 FAR GREATER THAN ANYONE 969 00:46:28,320 --> 00:46:36,000 RECOGNIZED AND WE ALSO HAVE THE 970 00:46:36,000 --> 00:46:37,360 ACTING DIRECTOR OF THE RESEARCH 971 00:46:37,360 --> 00:46:40,520 AND HAPPENS TO BE A PEDIATRIC 972 00:46:40,520 --> 00:46:45,440 NEUROLOGIST AND WAS CHAIR OF 973 00:46:45,440 --> 00:46:50,240 PEDIATRICS AND THE HOSPITAL'S 974 00:46:50,240 --> 00:46:51,800 CEO AT THE CHILDREN'S UNIVERSITY 975 00:46:51,800 --> 00:46:53,120 HOSPITAL OF RODCHESTER. 976 00:46:53,120 --> 00:46:55,680 IT'S GREAT TO HAVE HER ADVICE. 977 00:46:55,680 --> 00:46:58,240 SHE'S NOT A FORMAL MEMBER OF THE 978 00:46:58,240 --> 00:46:58,920 WORKING GROUP BUT WE'RE REPORT 979 00:46:58,920 --> 00:47:09,360 TO HER AS ONE OF THE PEOPLE. 980 00:47:11,400 --> 00:47:13,840 MY HOPE I SAY THIS EVERY TIME 981 00:47:13,840 --> 00:47:17,440 WE'LL HAVE A PERMANENT 982 00:47:17,440 --> 00:47:20,960 SCIENTIFIC DIRECTOR NAMED SOON. 983 00:47:20,960 --> 00:47:26,520 WE HAD 4 EXCELLENT FINALISTS IN 984 00:47:26,520 --> 00:47:28,440 THE SHORT LIST AND WE'LL HEAR 985 00:47:28,440 --> 00:47:31,160 FROM DR. CHRIS McBAIN DOING AN 986 00:47:31,160 --> 00:47:34,640 OUTSTANDING JOB AS OUR ACTING 987 00:47:34,640 --> 00:47:36,480 SCIENTIFIC DIRECTOR OR THE 988 00:47:36,480 --> 00:47:38,360 DIRECTOR OF THE INTRAMURAL 989 00:47:38,360 --> 00:47:39,480 RESEARCH PROGRAM. 990 00:47:39,480 --> 00:47:43,200 DR. PORTER, I THINK I MENTIONED 991 00:47:43,200 --> 00:47:49,440 LAST TIME REQUIRED AS CLINICAL 992 00:47:49,440 --> 00:47:50,360 DIRECTOR. 993 00:47:50,360 --> 00:47:51,120 SINCE SPRING WE HAVE FORMED A 994 00:47:51,120 --> 00:47:52,320 COMMITTEE AND APPLICATIONS WERE 995 00:47:52,320 --> 00:47:54,000 RECEIVED OVER THE SUMMER AND 996 00:47:54,000 --> 00:47:57,720 BEING REVIEWED BY THE SEARCH 997 00:47:57,720 --> 00:48:01,360 COMMITTEE. 998 00:48:01,360 --> 00:48:05,480 AND I BELIEVE THEY'LL START 999 00:48:05,480 --> 00:48:11,240 INTERVIEWS LATER THIS MONTH. 1000 00:48:11,240 --> 00:48:12,600 AND THEN THEY'LL BE RECOMMENDING 1001 00:48:12,600 --> 00:48:14,400 THE BEST CANDIDATES FOR MY 1002 00:48:14,400 --> 00:48:17,440 CONSIDERATION. 1003 00:48:17,440 --> 00:48:27,200 THAT'S ALL MOVING ALONG. 1004 00:48:27,200 --> 00:48:28,960 WE'RE LOOKING FOR A CHIEF 1005 00:48:28,960 --> 00:48:30,400 DIVERSITY OFFICER AND LOOKING 1006 00:48:30,400 --> 00:48:32,680 FOR STAFF IN THE OFFICE OF 1007 00:48:32,680 --> 00:48:35,880 HEALTH EQUITY. 1008 00:48:35,880 --> 00:48:38,640 WE HAVE THREE BRANCH CHIEF 1009 00:48:38,640 --> 00:48:40,840 POSITIONS OPEN INCLUDING THE 1010 00:48:40,840 --> 00:48:44,600 CHIEF OF THE MATERNAL AND 1011 00:48:44,600 --> 00:48:45,840 INFECTIOUS DISEASE BRANCH AND 1012 00:48:45,840 --> 00:48:48,040 FERTILITY AND INFERTILITY 1013 00:48:48,040 --> 00:48:49,920 BRANCHES AMONG OTHERS. 1014 00:48:49,920 --> 00:48:51,760 I'D LIKE TO THANK DR. LEE FOR 1015 00:48:51,760 --> 00:48:57,440 BEING THE ACTING CHIEF OF MPIBB 1016 00:48:57,440 --> 00:49:03,640 AND DR. DAN JOHNSON WHO IS THE 1017 00:49:03,640 --> 00:49:08,520 TRIPLE THREAT WITH HIS OWN 1018 00:49:08,520 --> 00:49:09,280 CONTRACEPTIVE RESEARCH BRANCH 1019 00:49:09,280 --> 00:49:10,840 AND DIRECTOR OF TWO INSTITUTES. 1020 00:49:10,840 --> 00:49:12,960 WE'RE ALSO LOOKING FOR MULTIPLE 1021 00:49:12,960 --> 00:49:15,120 SCIENTIFIC REVIEW PROGRAM 1022 00:49:15,120 --> 00:49:16,280 OFFICERS AND PROGRAM ANALYSTS 1023 00:49:16,280 --> 00:49:19,680 AND TWO THINGS TO KEEP IN MIND 1024 00:49:19,680 --> 00:49:22,720 FOR THOSE WHO ARE LISTENING 1025 00:49:22,720 --> 00:49:23,960 VIRTUALLY, WE HAVE MUCH MORE 1026 00:49:23,960 --> 00:49:25,880 FLEXIBILITY IN SOME OF THESE 1027 00:49:25,880 --> 00:49:29,440 POSITIONS TO WORK FULLY REMOTELY 1028 00:49:29,440 --> 00:49:31,520 FROM OTHER PLACES IN THE 1029 00:49:31,520 --> 00:49:35,040 DOMESTIC UNITED STATES AND DON'T 1030 00:49:35,040 --> 00:49:38,280 FORGET THAT FULLY PAID 12-WEEK 1031 00:49:38,280 --> 00:49:38,960 MATERNAL LEAVE OPTION WE HAVE IN 1032 00:49:38,960 --> 00:49:39,800 THE FEDERAL GOVERNMENT. 1033 00:49:39,800 --> 00:49:43,520 WITH THAT, I BELIEVE I'M AT THE 1034 00:49:43,520 --> 00:49:44,560 END. 1035 00:49:44,560 --> 00:49:45,720 I THINK IT'S MY THANK YOU SLIDE 1036 00:49:45,720 --> 00:49:47,640 AND HAPPY TO TAKE QUESTIONS. 1037 00:49:47,640 --> 00:49:50,040 HOW ARE WE DOING WITH TIME? 1038 00:49:50,040 --> 00:49:52,720 I MAY ARE RAN OVER A LITTLE BIT. 1039 00:49:52,720 --> 00:49:57,920 NO, WE HAVE SO MINUTES FOR 1040 00:49:57,920 --> 00:50:08,080 QUESTION. 1041 00:50:13,040 --> 00:50:13,200 DAVID. 1042 00:50:13,200 --> 00:50:17,880 >> I JUST WANTED TO REFLECT 1043 00:50:17,880 --> 00:50:21,160 SUPPORT FOR THE STILLBIRTH 1044 00:50:21,160 --> 00:50:23,840 INITIATIVE AS A NEONATOLOGIST WE 1045 00:50:23,840 --> 00:50:26,040 RECOGNIZE IT'S ONE OF THE GREAT 1046 00:50:26,040 --> 00:50:28,160 TRAGEDIES OF SOCIETY AND EFFORTS 1047 00:50:28,160 --> 00:50:31,160 TO IDENTIFY RISK AND DETECT OR 1048 00:50:31,160 --> 00:50:33,880 PREVENT STILLBIRTH IS A 1049 00:50:33,880 --> 00:50:34,920 TREMENDOUS GOAL. 1050 00:50:34,920 --> 00:50:37,800 IT WILL HAVE A LOT OF BENEFICIAL 1051 00:50:37,800 --> 00:50:40,040 KNOCK-ON EFFECT AMONG MANY 1052 00:50:40,040 --> 00:50:42,680 ISSUES YOU JUST DISCUSSED. 1053 00:50:42,680 --> 00:50:45,200 >> THANK YOU, DAVID. 1054 00:50:45,200 --> 00:50:49,440 I JUST ATTENDED AT A MEETING IN 1055 00:50:49,440 --> 00:50:52,000 SAN DIEGO THIS PAST WEEK AND 1056 00:50:52,000 --> 00:50:53,440 BEFORE THAT WAS A WORKSHOP ON 1057 00:50:53,440 --> 00:50:58,440 THE FETAL GENOMICS CONSORTIUM 1058 00:50:58,440 --> 00:51:01,080 WHICH HAS COME OUT OF THE FUNDED 1059 00:51:01,080 --> 00:51:05,440 INITIATIVES WE CO-FUNDED WITH 1060 00:51:05,440 --> 00:51:13,320 NHGRI. 1061 00:51:13,320 --> 00:51:14,640 PEOPLE ARE SAYING THE 1062 00:51:14,640 --> 00:51:17,880 CONNECTIONS WITH THE ANOMALIES 1063 00:51:17,880 --> 00:51:24,560 WE'RE SEEING PRENATALLY AND 1064 00:51:24,560 --> 00:51:26,320 INCLUDE PEOPLE WITH GENOMIC 1065 00:51:26,320 --> 00:51:29,440 EXPERTISE IN THE STILLBIRTH 1066 00:51:29,440 --> 00:51:39,680 WORKING GROUP. 1067 00:51:54,880 --> 00:51:56,040 >> NO QUESTION JUST IMPRESSED 1068 00:51:56,040 --> 00:51:57,800 WITH THE BREADTH AND DEPTH OF 1069 00:51:57,800 --> 00:52:00,120 THE INSTITUTE. 1070 00:52:00,120 --> 00:52:02,080 BONNIE, I KNOW YOU'VE BEEN 1071 00:52:02,080 --> 00:52:07,760 INFORMALLY IN A FEW TIMES. 1072 00:52:07,760 --> 00:52:12,760 I THINK THE INITIATIVES FOR 1073 00:52:12,760 --> 00:52:19,720 STILL BIRTH ARE CRITICAL MANY OF 1074 00:52:19,720 --> 00:52:22,320 US HAVE BEEN WORKING IN THE AREA 1075 00:52:22,320 --> 00:52:24,040 OF STILLBIRTH AND UNFORTUNATELY 1076 00:52:24,040 --> 00:52:25,360 ONLY RECENTLY RECOGNIZED A MAJOR 1077 00:52:25,360 --> 00:52:28,080 PROBLEM AND UNFORTUNATELY AS YOU 1078 00:52:28,080 --> 00:52:29,440 POINTED OUT WITH NO CHANGES OVER 1079 00:52:29,440 --> 00:52:32,600 THE LAST MANY DECADES NOW. 1080 00:52:32,600 --> 00:52:38,320 LOOK FORWARD TO THE OMICS 1081 00:52:38,320 --> 00:52:41,440 APPROACH AND HOPEFULLY WILL BE A 1082 00:52:41,440 --> 00:52:42,720 KEY AND THE RECOVER INITIATIVE 1083 00:52:42,720 --> 00:52:44,560 HAS BEEN WORKING AT THE ADULT 1084 00:52:44,560 --> 00:52:46,200 LEVEL BUT MORE IMPORTANTLY NOW 1085 00:52:46,200 --> 00:52:48,720 TO TRACK WHAT'S GOING TO HAPPEN 1086 00:52:48,720 --> 00:52:53,440 IN CHILDREN OVER THE LONG TERM. 1087 00:52:53,440 --> 00:52:55,160 AND FINALLY LOOKING FORWARD TO 1088 00:52:55,160 --> 00:52:57,280 SEEING APPLICANTS FOR THE MANY 1089 00:52:57,280 --> 00:52:58,360 EXCITING CHIEF POSITIONS TO 1090 00:52:58,360 --> 00:53:01,680 REALLY LEAD US INTO THE NEXT SET 1091 00:53:01,680 --> 00:53:03,080 OF INITIATIVES AS WE REALLY 1092 00:53:03,080 --> 00:53:05,440 START TO UNLOCK SOME OF THE 1093 00:53:05,440 --> 00:53:09,160 REALLY IMPORTANT AREAS OF 1094 00:53:09,160 --> 00:53:09,840 UNDERSTANDING FUNDAMENTAL BASIC 1095 00:53:09,840 --> 00:53:13,440 WORK THAT CAN HELP US UNDERSTAND 1096 00:53:13,440 --> 00:53:15,800 THE UNDERLYING GENETIC AND 1097 00:53:15,800 --> 00:53:16,760 EPIGENETIC CHANGES THAT MAY 1098 00:53:16,760 --> 00:53:19,000 IMPACT OUTCOMES IN CHILDREN. 1099 00:53:19,000 --> 00:53:20,800 I THINK WE HAVE SO MUCH MORE 1100 00:53:20,800 --> 00:53:22,440 CAPACITY TO DO THAT AND IT'S 1101 00:53:22,440 --> 00:53:23,640 IMPORTANT TO HARNESS THAT FOR 1102 00:53:23,640 --> 00:53:24,240 CHILDREN AND FOR LIFE COURSE. 1103 00:53:24,240 --> 00:53:34,440 THANK YOU. 1104 00:53:44,280 --> 00:53:45,440 >> THANK YOU. 1105 00:53:45,440 --> 00:53:48,320 YOU CAN COME OFF MUTE. 1106 00:53:48,320 --> 00:53:49,480 >> MY VOICE IS A LITTLE CRACKED. 1107 00:53:49,480 --> 00:53:52,960 JUST GETTING OVER COVID. 1108 00:53:52,960 --> 00:53:57,440 I JUST WANT TO SAY THANK YOU. 1109 00:53:57,440 --> 00:53:59,480 THE WORK YOU DESCRIBED IS SO 1110 00:53:59,480 --> 00:54:01,440 IMPORTANT AS WE THINK OF THE 1111 00:54:01,440 --> 00:54:03,120 FUTURE OF WOMEN'S AND CHILDREN'S 1112 00:54:03,120 --> 00:54:06,360 HEALTH AND HAVING PROJECTS 1113 00:54:06,360 --> 00:54:08,160 LOOKING AT MATERNAL AS WELL AS 1114 00:54:08,160 --> 00:54:08,800 FETAL OUTCOMES SIMULTANEOUSLY IS 1115 00:54:08,800 --> 00:54:11,960 SO CRITICAL. 1116 00:54:11,960 --> 00:54:15,600 I WANT TO THANK YOU FOR THE 1117 00:54:15,600 --> 00:54:17,200 LEADERSHIP AND FOR BEING 1118 00:54:17,200 --> 00:54:17,480 INCLUDED. 1119 00:54:17,480 --> 00:54:22,000 >> WE HOPE YOU RECOVER 1120 00:54:22,000 --> 00:54:23,960 UNEVENTFULLY AND SORRY TO HEAR 1121 00:54:23,960 --> 00:54:30,880 ABOUT BEING INFECTED RECENTLY. 1122 00:54:30,880 --> 00:54:32,640 I CANNOT EXPLAIN WHAT AN 1123 00:54:32,640 --> 00:54:34,040 ENORMOUS EFFORT THIS HAS BEEN 1124 00:54:34,040 --> 00:54:35,360 FOR THE ENTIRE STAFF. 1125 00:54:35,360 --> 00:54:40,720 THEY'VE REALLY ROLLED UP THEIR 1126 00:54:40,720 --> 00:54:41,080 SLEEVES. 1127 00:54:41,080 --> 00:54:42,880 EVERYONE FOR THE LAST TWO YEARS 1128 00:54:42,880 --> 00:54:44,960 HAS BEEN DOING TWO JOBS 1129 00:54:44,960 --> 00:54:45,440 ESSENTIALLY. 1130 00:54:45,440 --> 00:54:47,360 THEY'RE REGULAR JOB PLUS THEIR 1131 00:54:47,360 --> 00:54:48,720 COVID-RELATED JOB AND ON TOP OF 1132 00:54:48,720 --> 00:54:51,240 IT TO ASK EVERYONE TO DO THE 1133 00:54:51,240 --> 00:54:56,560 WORK IN AN ACCELERATED TIME 1134 00:54:56,560 --> 00:54:56,760 LINE. 1135 00:54:56,760 --> 00:54:59,360 THIS REALLY ATTESTS TO THE 1136 00:54:59,360 --> 00:55:05,440 DEDICATION OF OUR STAFF NOT ONLY 1137 00:55:05,440 --> 00:55:06,880 AT NICHD AND ACROSS NIH. 1138 00:55:06,880 --> 00:55:09,600 THE FACT THAT PEOPLE ARE SO 1139 00:55:09,600 --> 00:55:12,800 COMMITTED TO IMPROVING HEALTH 1140 00:55:12,800 --> 00:55:21,720 PARTICULARLY FOR OUR OPERATIONS. 1141 00:55:21,720 --> 00:55:26,360 WE'RE TRYING TO RECOGNIZE 1142 00:55:26,360 --> 00:55:26,960 PEOPLE, AWARDS AND FINANCIAL 1143 00:55:26,960 --> 00:55:37,400 SUPPORT WHERE APPROPRIATE. 1144 00:55:44,080 --> 00:55:45,480 >> LOOKS LIKE WE HAVE A LITTLE 1145 00:55:45,480 --> 00:55:47,280 BIT OF TIME BUT I KNOW ALL 1146 00:55:47,280 --> 00:55:48,720 INSTITUTIONS ARE REALLY JUST 1147 00:55:48,720 --> 00:55:59,080 STARTING TO TRY TO RECOUP FROM 1148 00:55:59,080 --> 00:56:02,680 THE AFFECTS OF THE PANDEMIC AND 1149 00:56:02,680 --> 00:56:03,800 THERE'S STRESS AND WONDERING 1150 00:56:03,800 --> 00:56:05,400 WHAT'S DONE AT THE NIH LEVEL TO 1151 00:56:05,400 --> 00:56:07,000 HELP WITH STAFF WELLNESS AND 1152 00:56:07,000 --> 00:56:07,800 STRESS RELIEF? 1153 00:56:07,800 --> 00:56:12,240 I KNOW THIS HAS BEEN QUITE A 1154 00:56:12,240 --> 00:56:13,840 DIFFICULT TIME FOR EVERYBODY AND 1155 00:56:13,840 --> 00:56:15,840 WORKING IN MANY WAYS MUCH 1156 00:56:15,840 --> 00:56:16,080 HARDER. 1157 00:56:16,080 --> 00:56:17,680 THIS ZOOM ERA IS NOT AS 1158 00:56:17,680 --> 00:56:19,560 FORGIVING AS IN-PERSON WORK AND 1159 00:56:19,560 --> 00:56:24,040 WONDERING WHAT INITIATIVES HAVE 1160 00:56:24,040 --> 00:56:25,640 BEEN ALLOWED AT THE WHOLE 1161 00:56:25,640 --> 00:56:32,760 INSTITUTIONAL LEVEL. 1162 00:56:32,760 --> 00:56:35,240 >> THANK YOU FOR THE QUESTION. 1163 00:56:35,240 --> 00:56:36,560 WE CERTAINLY RECOGNIZE THE 1164 00:56:36,560 --> 00:56:37,640 MENTAL HEALTH EFFECTS NOT ONLY 1165 00:56:37,640 --> 00:56:42,800 OF OUR STAFF BUT ON THEIR 1166 00:56:42,800 --> 00:56:46,440 CHILDREN, ON ALL MEMBERS OF 1167 00:56:46,440 --> 00:56:47,440 SOCIETY AND EXTRAMURAL RESEARCH 1168 00:56:47,440 --> 00:56:47,880 WORKFORCE AS WELL. 1169 00:56:47,880 --> 00:56:49,440 WITHIN THE NIH THERE'S BEEN A 1170 00:56:49,440 --> 00:56:53,600 NUMBER OF WELLNESS INITIATIVES. 1171 00:56:53,600 --> 00:56:58,160 WE HAVE RESOURCES WE POINT 1172 00:56:58,160 --> 00:56:59,720 PEOPLE TO. 1173 00:56:59,720 --> 00:57:01,600 WHEN WE DO OUR MONTHLY TOWN 1174 00:57:01,600 --> 00:57:07,160 HALLS WE ENCOURAGE MENTAL HEALTH 1175 00:57:07,160 --> 00:57:07,560 BREAKS. 1176 00:57:07,560 --> 00:57:11,360 AT NICHD WE HAVE NO MEETING 1177 00:57:11,360 --> 00:57:11,600 WEEKS. 1178 00:57:11,600 --> 00:57:14,120 WE DISCOURAGE NON-URGENT E-MAIL 1179 00:57:14,120 --> 00:57:18,600 MESSAGES OVER THE WEEKEND. 1180 00:57:18,600 --> 00:57:20,800 WE'RE APPROACHING PEOPLE TO GET 1181 00:57:20,800 --> 00:57:24,040 OUT AND GET EXERCISE. 1182 00:57:24,040 --> 00:57:27,880 THERE'S YOGA ACTIVITIES ACROSS 1183 00:57:27,880 --> 00:57:30,040 NIH, VIRTUAL YOGA WE'RE VERY 1184 00:57:30,040 --> 00:57:32,400 AWARE OF IT AND CERTAINLY 1185 00:57:32,400 --> 00:57:33,920 ENCOURAGING PEOPLE TO TAKE CARE 1186 00:57:33,920 --> 00:57:38,240 OF THEIR MENTAL AND PHYSICAL 1187 00:57:38,240 --> 00:57:38,520 WELLNESS. 1188 00:57:38,520 --> 00:57:40,520 I AGREE, I THINK THE HARDEST 1189 00:57:40,520 --> 00:57:42,560 THING FOR MOST PEOPLE IS THAT 1190 00:57:42,560 --> 00:57:45,480 THE LINE BETWEEN WORK AND HOME 1191 00:57:45,480 --> 00:57:47,120 HAS BEEN BLURRED. 1192 00:57:47,120 --> 00:57:49,000 YOU ARE ALMOST WORKING AROUND 1193 00:57:49,000 --> 00:57:49,880 THE CLOCK AND I CERTAINLY EXPECT 1194 00:57:49,880 --> 00:57:53,440 THAT IN MY POSITION BUT MY 1195 00:57:53,440 --> 00:57:57,280 HUSBAND HAS MORE OF A 9:00 TO 1196 00:57:57,280 --> 00:57:58,800 5:00 JOB AND SEE IT IN HIM HE 1197 00:57:58,800 --> 00:58:01,440 FEELS THE NEED TO GO AROUND THE 1198 00:58:01,440 --> 00:58:06,760 CLOCK VIRTUALLY. 1199 00:58:06,760 --> 00:58:08,520 THERE'S NO QUESTION THERE'S BEEN 1200 00:58:08,520 --> 00:58:11,440 SIGNIFICANT MENTAL HEALTH 1201 00:58:11,440 --> 00:58:16,800 AFFECTS AND I'M SURE THAT IS 1202 00:58:16,800 --> 00:58:23,760 TRUE IN THE U.K. I'LL TAKE 1203 00:58:23,760 --> 00:58:25,560 ADAM'S QUESTION AND THEN WANT TO 1204 00:58:25,560 --> 00:58:32,160 GIVE A CHANCE FOR INTRODUCTION. 1205 00:58:32,160 --> 00:58:41,400 >> WE MENTION ED BIDEN IS SET T 1206 00:58:41,400 --> 00:58:41,920 ANNOUNCE A NEW DIRECTOR. 1207 00:58:41,920 --> 00:58:42,760 YOU MENTIONED ARPA-H IN THE 1208 00:58:42,760 --> 00:58:45,360 PAST. 1209 00:58:45,360 --> 00:58:47,680 ONE QUESTION WE HAD GOTTEN FROM 1210 00:58:47,680 --> 00:58:49,280 OUR COMMUNITY IS WHERE DOES 1211 00:58:49,280 --> 00:58:53,440 PEDIATRICS FIT IN ARPA-H AND IS 1212 00:58:53,440 --> 00:58:56,280 THERE A NARRATIVE FOR PEDIATRICS 1213 00:58:56,280 --> 00:58:58,640 AND WHAT CAN WE DO TO ADVOCATE 1214 00:58:58,640 --> 00:59:03,760 FOR THE NEW AGENCY THAT PREVIOUS 1215 00:59:03,760 --> 00:59:05,160 FAILURES INCLUDE A FORWARD 1216 00:59:05,160 --> 00:59:05,680 LOOKING VISION. 1217 00:59:05,680 --> 00:59:06,280 >> GREAT QUESTION AND YOU'RE 1218 00:59:06,280 --> 00:59:13,440 RIGHT. 1219 00:59:13,440 --> 00:59:18,840 THIS NEWS CAME THIS MORNING. 1220 00:59:18,840 --> 00:59:27,920 I KNOW SOMEONE IS COVERING A 1221 00:59:27,920 --> 00:59:31,200 MEETING FOR ME WITH THE 1222 00:59:31,200 --> 00:59:31,840 ASSISTANT SECRETARY. 1223 00:59:31,840 --> 00:59:33,760 SHE KNOWS THE PERSON WHO HAS 1224 00:59:33,760 --> 00:59:39,920 BEEN NAMED AS THE PERMANENT 1225 00:59:39,920 --> 00:59:43,640 DIRECTOR OF ARPA-H WHO HAS 1226 00:59:43,640 --> 00:59:44,240 PREVIOUS DARPA EXPERIENCE AS 1227 00:59:44,240 --> 00:59:45,920 WELL AS BIO TECH EXPERIENCE. 1228 00:59:45,920 --> 00:59:48,040 TO ANSWER YOUR QUESTION ABOUT 1229 00:59:48,040 --> 00:59:50,080 OPPORTUNITIES FOR PEDIATRIC 1230 00:59:50,080 --> 00:59:55,960 RESEARCH, I THINK THIS IS WHERE 1231 00:59:55,960 --> 01:00:00,880 WE'RE EXCITING ABOUT MONICA 1232 01:00:00,880 --> 01:00:01,800 BERTAGNOLLI'S PRESENTATION AND 1233 01:00:01,800 --> 01:00:04,400 THE FACT THAT SHE AINDEPENDENTLY 1234 01:00:04,400 --> 01:00:06,520 REACHED OUT TO ME BEFORE SHE 1235 01:00:06,520 --> 01:00:12,720 EVEN STARTED IS ONE CONNECTING 1236 01:00:12,720 --> 01:00:12,960 THREAD. 1237 01:00:12,960 --> 01:00:17,880 THE FACT THAT DR. SART ICH KNOWS 1238 01:00:17,880 --> 01:00:18,480 THE NEW DIRECTOR WILL HELP IN 1239 01:00:18,480 --> 01:00:25,400 DIRECT WAYS. 1240 01:00:25,400 --> 01:00:26,760 WE'LL USE WHATEVER OPPORTUNITIES 1241 01:00:26,760 --> 01:00:29,080 WE HAVE TO INCLUDE THE PEDIATRIC 1242 01:00:29,080 --> 01:00:30,680 RESEARCH AGENDA WHETHER IT'S 1243 01:00:30,680 --> 01:00:33,440 PEDIATRIC DIABETES OR PEDIATRIC 1244 01:00:33,440 --> 01:00:37,440 CANCER. 1245 01:00:37,440 --> 01:00:40,080 WE INITIATIVELY TALKED WITH 1246 01:00:40,080 --> 01:00:43,040 DR. TARA SCHWETZ, WHO AT THE 1247 01:00:43,040 --> 01:00:47,160 TIME WORKING IN THE OSTP AND 1248 01:00:47,160 --> 01:00:49,240 WHITE HOUSE WAS WORKING ON THE 1249 01:00:49,240 --> 01:00:51,760 INITIAL PLANS FOR ARPA-H AND WE 1250 01:00:51,760 --> 01:00:53,320 SUGGESTED MATERNAL HEALTH ISSUES 1251 01:00:53,320 --> 01:00:57,240 AS WELL AND ECLAMPSIA AND OTHER 1252 01:00:57,240 --> 01:00:58,760 CONDITIONS THAT DO NEED NOVEL 1253 01:00:58,760 --> 01:00:59,040 THERAPIES. 1254 01:00:59,040 --> 01:01:01,200 WE'RE NOT AT THE TOP OF THE LIST 1255 01:01:01,200 --> 01:01:02,720 IN TERMS OF THE PRESIDENT'S 1256 01:01:02,720 --> 01:01:07,360 AGENDA BUT WE'RE GOING TO BE 1257 01:01:07,360 --> 01:01:09,440 INTEGRATING OUR SELVES WHERE WE 1258 01:01:09,440 --> 01:01:12,120 CAN. 1259 01:01:12,120 --> 01:01:16,920 SO LET ME INTRODUCE DR. FAIR. 1260 01:01:16,920 --> 01:01:20,400 I DON'T KNOW IF YOU HEARD ME BUT 1261 01:01:20,400 --> 01:01:22,640 WE'D LIKE YOU TO TELL US BRIEFLY 1262 01:01:22,640 --> 01:01:23,800 A BIT ABOUT YOURSELF SO EVERYONE 1263 01:01:23,800 --> 01:01:27,720 WILL KNOW WHO YOU ARE. 1264 01:01:27,720 --> 01:01:28,560 >> SURE. 1265 01:01:28,560 --> 01:01:29,960 >> I'M ROUGH AROUND THE EDGES 1266 01:01:29,960 --> 01:01:30,800 TOO. 1267 01:01:30,800 --> 01:01:33,440 I JUST TESTED POSITIVE FOR COVID 1268 01:01:33,440 --> 01:01:42,040 THIS MORNING. 1269 01:01:42,040 --> 01:01:45,440 I'M DAMIEN FAIR PROFESSOR AT THE 1270 01:01:45,440 --> 01:01:49,440 UNIVERSITY OF MINNESOTA. 1271 01:01:49,440 --> 01:01:51,800 I'M IN PEDIATRIC AND INSTITUTE 1272 01:01:51,800 --> 01:01:53,760 OF CHILD DEVELOPMENT AND 1273 01:01:53,760 --> 01:01:55,080 DIRECTOR OF A NEW INSTITUTE 1274 01:01:55,080 --> 01:01:59,760 CALLED THE MASONIC INSTITUTE FOR 1275 01:01:59,760 --> 01:02:04,520 THE DEVELOPING BRAIN WHERE WE 1276 01:02:04,520 --> 01:02:07,760 ARE TRYING TO PULL TOGETHER MANY 1277 01:02:07,760 --> 01:02:12,600 SILOED UNITED STATES AROUND 1278 01:02:12,600 --> 01:02:15,200 MATERNAL AND CHILD HEALTH AND 1279 01:02:15,200 --> 01:02:19,640 EDUCATION AND PSYCHOLOGY IN ONE 1280 01:02:19,640 --> 01:02:21,200 BUILDING TO SPEED UP THE 1281 01:02:21,200 --> 01:02:22,440 TRANSLATION TO REACH THE PEOPLE. 1282 01:02:22,440 --> 01:02:26,320 IT'S ONE OF THE REASONS I WAS 1283 01:02:26,320 --> 01:02:27,840 FRANTICALLY WRITING DOWN THE NEW 1284 01:02:27,840 --> 01:02:28,880 INITIATIVES AROUND THE COMMUNITY 1285 01:02:28,880 --> 01:02:34,880 WORK AND EFFORTS AND INVESTMENTS 1286 01:02:34,880 --> 01:02:39,520 IT'S ONE OF THE MAJOR CHALLENGES 1287 01:02:39,520 --> 01:02:41,000 WE PENNED AS MAKING REAL 1288 01:02:41,000 --> 01:02:42,320 PROGRESS ESSENTIALLY WORKING 1289 01:02:42,320 --> 01:02:47,560 WITH THE COMMUNITY AND THE IDEA 1290 01:02:47,560 --> 01:02:49,280 AND THE WORK SO IT'S AN ALL 1291 01:02:49,280 --> 01:02:52,360 HANDS ON DECK AFFAIR AND ONE OF 1292 01:02:52,360 --> 01:02:54,800 THE CRITICAL POEPTS. 1293 01:02:54,800 --> 01:02:59,880 YOU CAN -- CRITICAL COMPONENTS 1294 01:02:59,880 --> 01:03:01,480 IT'S NEW TO ME AND I'M LEARNING. 1295 01:03:01,480 --> 01:03:02,880 I APPRECIATE THAT AND HAVE MORE 1296 01:03:02,880 --> 01:03:03,800 READING TO DO, I GUESS, FOR THE 1297 01:03:03,800 --> 01:03:08,920 NEXT WEEK. 1298 01:03:08,920 --> 01:03:10,160 >> WE HOPE YOU FEEL BETTER AS 1299 01:03:10,160 --> 01:03:16,160 WELL AND HAVE A RELATIVELY 1300 01:03:16,160 --> 01:03:17,440 SMOOTH COURSE OF COVID. 1301 01:03:17,440 --> 01:03:18,360 IF YOU NEED FURTHER INFORMATION 1302 01:03:18,360 --> 01:03:21,000 WE CAN CONNECT YOU EASILY TO 1303 01:03:21,000 --> 01:03:22,480 PROGRAM OFFICIALS WHO CAN GUIDE 1304 01:03:22,480 --> 01:03:24,200 YOU THROUGH SOME OF THE STEPS. 1305 01:03:24,200 --> 01:03:29,240 ONE OF THE THINGS WE DIDN'T 1306 01:03:29,240 --> 01:03:33,280 MENTION WAS AN EXISTING 1307 01:03:33,280 --> 01:03:34,280 COMMUNITY EDUCATION PROGRAM RUN 1308 01:03:34,280 --> 01:03:35,680 BY NHLBI. 1309 01:03:35,680 --> 01:03:37,040 THEY'RE ALSO GETTING FUNDING 1310 01:03:37,040 --> 01:03:38,760 FROM THE IMPROV INITIATIVE BUT 1311 01:03:38,760 --> 01:03:39,320 THOSE ARE WITH ACADEMIC 1312 01:03:39,320 --> 01:03:43,040 PARTNERS. 1313 01:03:43,040 --> 01:03:44,360 YOU'RE NOT INCLUDED FROM WORKING 1314 01:03:44,360 --> 01:03:46,800 WITH AN ACADEMIC PARTNER IN THE 1315 01:03:46,800 --> 01:03:48,120 MATERNAL HEALTH CHALLENGE I 1316 01:03:48,120 --> 01:03:52,280 MENTIONED BUT WE REALLY WANTED 1317 01:03:52,280 --> 01:03:54,640 TO INCLUDE ORGANIZATIONS THAT 1318 01:03:54,640 --> 01:03:56,160 DON'T HAVE THAT SUPPORT. 1319 01:03:56,160 --> 01:03:57,440 BUT IF YOU HAD THE SUPPORT, 1320 01:03:57,440 --> 01:04:05,080 THAT'S OKAY TOO. 1321 01:04:05,080 --> 01:04:06,080 REACH OUT TO YOU GET THE 1322 01:04:06,080 --> 01:04:11,440 INFORMATION YOU NEED TO PASS ON 1323 01:04:11,440 --> 01:04:14,080 TO THE COMMUNITY ORGANIZATIONS. 1324 01:04:14,080 --> 01:04:16,240 I WANT TO PASS ON I HAPPEN TO 1325 01:04:16,240 --> 01:04:24,040 SPEAK AT A MEETING IN JULY AND 1326 01:04:24,040 --> 01:04:27,240 TOOK A TWO-HOUR CAR RIDE WITH 1327 01:04:27,240 --> 01:04:37,760 SOMEONE SINGING YOUR PRAISES. 1328 01:04:38,160 --> 01:04:40,640 WE'LL MAKE IT UP QUICKLY WITH 1329 01:04:40,640 --> 01:04:41,440 THE BREAK. 1330 01:04:41,440 --> 01:04:42,960 WITH THE NEW COUNCIL MEMBERS AS 1331 01:04:42,960 --> 01:04:44,880 I SAID A COUPLE TIMES, THE 1332 01:04:44,880 --> 01:04:47,800 SEPTEMBER MEETING TYPICALLY 1333 01:04:47,800 --> 01:04:48,560 FOCUSES ON NICHD'S INTRAMURAL 1334 01:04:48,560 --> 01:04:50,160 PROGRAM AND I'M GOING TO TURN 1335 01:04:50,160 --> 01:04:52,240 THE MEETING OVER NOW TO 1336 01:04:52,240 --> 01:04:57,200 DR. CHRIS McBAIN WHO IS THE 1337 01:04:57,200 --> 01:04:57,920 ACTING SCIENTIFIC DIRECTOR OF 1338 01:04:57,920 --> 01:05:00,080 THE INTRAMURAL PROGRAM AND WILL 1339 01:05:00,080 --> 01:05:02,200 GIVE THE ANNUAL DIVISION OF 1340 01:05:02,200 --> 01:05:02,760 INTRAMURAL RESEARCH REPORT. 1341 01:05:02,760 --> 01:05:02,960 CHRIS. 1342 01:05:02,960 --> 01:05:05,440 OVER TO YOU. 1343 01:05:05,440 --> 01:05:07,480 >> GOOD AFTERNOON, EVERYBODY. 1344 01:05:07,480 --> 01:05:12,040 FOR THOSE WHO DON'T KNOW ME I'M 1345 01:05:12,040 --> 01:05:14,520 CHRIS McVEIGH. 1346 01:05:14,520 --> 01:05:15,840 THE CURRENT DIRECTOR FOR THE 1347 01:05:15,840 --> 01:05:17,800 INTRAMURAL PROGRAM AND A 1348 01:05:17,800 --> 01:05:20,200 SCIENTIST AND INTERESTED IN THE 1349 01:05:20,200 --> 01:05:22,520 DEVELOPMENT OF SMALL NEURAL 1350 01:05:22,520 --> 01:05:26,400 CIRCUITS INSIDE THE HIPPOCAMPUS 1351 01:05:26,400 --> 01:05:30,480 AND LOOKING AT PLASTICITY AND 1352 01:05:30,480 --> 01:05:32,240 TRYING TO SOLVE EVOLUTIONARY 1353 01:05:32,240 --> 01:05:33,440 QUESTIONS AT THE MOMENT RELATED 1354 01:05:33,440 --> 01:05:35,760 TO LEARNING AND MEMORY AND CELL 1355 01:05:35,760 --> 01:05:39,440 TYPE IDENTITY. 1356 01:05:39,440 --> 01:05:44,120 WE RUN A NEUROSCIENCE LAB INSIDE 1357 01:05:44,120 --> 01:05:45,040 CHILD HEALTH. 1358 01:05:45,040 --> 01:05:46,840 WHAT I THOUGHT I'D FOCUS ON ARE 1359 01:05:46,840 --> 01:05:49,000 ON FOUR MAIN TOPICS TO GIVE YOU 1360 01:05:49,000 --> 01:05:50,400 AN OVERVIEW OF THE INTRAMURAL 1361 01:05:50,400 --> 01:05:54,680 PROGRAM AS IT STANDS RIGHT NOW. 1362 01:05:54,680 --> 01:05:55,560 SOME BUDGET AND PERSONNEL 1363 01:05:55,560 --> 01:06:01,360 UPDATES WE'RE WORKING ON AND I 1364 01:06:01,360 --> 01:06:02,360 MIGHT SPEND THE TALK ABOUT 1365 01:06:02,360 --> 01:06:03,960 INITIATIVES WE STARTED IN OUR 1366 01:06:03,960 --> 01:06:05,760 OFFICE OF EDUCATION AND UPDATES 1367 01:06:05,760 --> 01:06:06,280 ON OUR HOWARD UNIVERSITY 1368 01:06:06,280 --> 01:06:08,920 PARTNERSHIP. 1369 01:06:08,920 --> 01:06:10,440 IF ANYBODY HAS QUESTIONS DURING 1370 01:06:10,440 --> 01:06:13,920 THE TALK, FEEL FREE TO INTERRUPT 1371 01:06:13,920 --> 01:06:15,240 ME OR WE CAN HOLD CONVERSATION 1372 01:06:15,240 --> 01:06:15,640 TO THE END. 1373 01:06:15,640 --> 01:06:17,960 I'M HAPPY OTHER WAY BUT I'D 1374 01:06:17,960 --> 01:06:21,440 RATHER I WAS ABLE TO ANSWER YOUR 1375 01:06:21,440 --> 01:06:27,200 QUESTIONS ON THE FLY. 1376 01:06:27,200 --> 01:06:28,600 IN OCTOBER OF 2021 IN THE 1377 01:06:28,600 --> 01:06:30,120 DIVISION OF POPULATION HEALTH 1378 01:06:30,120 --> 01:06:36,760 RESEARCH WAS FOLDED INTO THE 1379 01:06:36,760 --> 01:06:38,640 NIH, NICHD AND OUR DIVISION IS 1380 01:06:38,640 --> 01:06:42,400 MADE OF EIGHT DIVISIONS. 1381 01:06:42,400 --> 01:06:44,760 THE DEFERRED AND DEVELOPMENT 1382 01:06:44,760 --> 01:06:45,440 HEALTH RESEARCH AND 1383 01:06:45,440 --> 01:06:55,920 TRANSLATIONAL MEDICINE AND 1384 01:06:56,520 --> 01:06:59,960 MOLECULAR AND GENOMIC AND 1385 01:06:59,960 --> 01:07:01,440 TRANSLATION IMAGING AND THE 1386 01:07:01,440 --> 01:07:03,320 OBSTETRICS AND MATERNAL FETAL 1387 01:07:03,320 --> 01:07:03,760 MEDICINE. 1388 01:07:03,760 --> 01:07:05,800 THAT'S A LARGE PORTFOLIO OF 1389 01:07:05,800 --> 01:07:06,080 SCIENCE. 1390 01:07:06,080 --> 01:07:10,280 IT RANKS FROM GENETICS THROUGH 1391 01:07:10,280 --> 01:07:12,080 ZEBRAFISH THROUGH NEUROSCIENCE 1392 01:07:12,080 --> 01:07:20,240 THROUGH OBSTETRICS. 1393 01:07:20,240 --> 01:07:21,440 WITH THE ACQUISITION WE 1394 01:07:21,440 --> 01:07:23,920 REPRESENT ABOUT 750 PERSONNEL OF 1395 01:07:23,920 --> 01:07:26,200 WHICH WE HAVE 75 P.I.s. 1396 01:07:26,200 --> 01:07:29,480 61 ARE TENURED. 1397 01:07:29,480 --> 01:07:33,440 WE CURRENTLY HAVE 12 TENURE 1398 01:07:33,440 --> 01:07:35,000 TRACK INVESTIGATORS AND I'LL 1399 01:07:35,000 --> 01:07:37,440 TALK ABOUT THEM TOMORROW. 1400 01:07:37,440 --> 01:07:42,120 WE ALSO HAVE TWO ASSISTANT 1401 01:07:42,120 --> 01:07:44,840 PERSONAL INVESTIGATORS AND 1402 01:07:44,840 --> 01:07:47,800 PEOPLE WHO ARE BECOME SENIOR 1403 01:07:47,800 --> 01:07:50,040 SCIENTISTS EMBEDDED IN 1404 01:07:50,040 --> 01:07:59,640 PARTICULAR LABS AND THEY SERVE 1405 01:07:59,640 --> 01:08:02,760 SUPERVISORY POSITIONS AND WE 1406 01:08:02,760 --> 01:08:04,720 HAVE TRAINEES THAT RANGE FROM 1407 01:08:04,720 --> 01:08:07,680 GRADUATE STUDENTS THAT 1408 01:08:07,680 --> 01:08:11,040 PARTICIPATE IN OVER 30 GRADUATE 1409 01:08:11,040 --> 01:08:12,120 PARTNERSHIP PROGRAMS THAT EXIST 1410 01:08:12,120 --> 01:08:22,640 ON THE NIH AND HAVE POST-BAC 1411 01:08:29,520 --> 01:08:32,040 LAUREATE GRADUATES BEFORE THEY 1412 01:08:32,040 --> 01:08:38,360 DECIDE ON A CAREER AND WE HAVE 1413 01:08:38,360 --> 01:08:43,960 POST-DOCTORAL AND CLINIC 1414 01:08:43,960 --> 01:08:44,200 FELLOWS. 1415 01:08:44,200 --> 01:08:50,960 WE'RE CURRENTLY SEPARATED INTO 1416 01:08:50,960 --> 01:08:52,120 DIFFERENT GROUPS AND I'LL SHOW 1417 01:08:52,120 --> 01:08:53,280 THE COMPOSITION OF THESE IN THE 1418 01:08:53,280 --> 01:08:55,880 NEXT SLIDE. 1419 01:08:55,880 --> 01:08:57,480 IN THE POPULATION HEALTH 1420 01:08:57,480 --> 01:08:58,800 RESEARCH BRANCH THERE'S PROGRAMS 1421 01:08:58,800 --> 01:09:00,920 DIVIDED INTO THREE PROGRAMS AND 1422 01:09:00,920 --> 01:09:01,440 ONE PROGRAM. 1423 01:09:01,440 --> 01:09:05,960 THE EPIDEMIOLOGY BRANCH, 1424 01:09:05,960 --> 01:09:08,880 STATISTICS BRANCH AND SOCIAL 1425 01:09:08,880 --> 01:09:10,720 BEHAVIORAL SCIENCE BRANCH, 1426 01:09:10,720 --> 01:09:12,160 CON 1427 01:09:12,160 --> 01:09:12,920 CONTRACEPTIVE DEVELOPMENT 1428 01:09:12,920 --> 01:09:15,720 PROGRAM AND HAVE 69 PROGRAMS AND 1429 01:09:15,720 --> 01:09:18,160 SIX ACCREDITED TRAINING MEDICAL 1430 01:09:18,160 --> 01:09:21,480 PROGRAMS PEDIATRIC, ADULT AND 1431 01:09:21,480 --> 01:09:29,480 ENDOCRINOLOGY AND GIYNECOLOGY AD 1432 01:09:29,480 --> 01:09:33,480 REPRODUCTIVE AND PERINATAL 1433 01:09:33,480 --> 01:09:43,280 RESEARCH AND OBSTETRICS. 1434 01:09:43,280 --> 01:09:45,400 WEIR 1435 01:09:48,280 --> 01:09:52,120 WE HAVE REDEFINE THE STRUCTURE 1436 01:09:52,120 --> 01:09:54,240 OF OUR INTRAMURAL PROGRAM AND 1437 01:09:54,240 --> 01:09:57,440 ALLOWED SCIENTISTS TO 1438 01:09:57,440 --> 01:09:59,760 SELF-ASSEMBLE INTO 12 1439 01:09:59,760 --> 01:10:01,480 AFFINITY-BASED GROUPS. 1440 01:10:01,480 --> 01:10:04,320 THOSE ARE LARGELY BASED ON 1441 01:10:04,320 --> 01:10:07,800 AROUND THE TOPICS CAPTURED IN 1442 01:10:07,800 --> 01:10:14,680 THE RESEARCH PITFALL AND A FLID 1443 01:10:14,680 --> 01:10:15,680 ENTITY AND THEY CAN SWITCH 1444 01:10:15,680 --> 01:10:18,160 BETWEEN GROUPS TO SEEK OUT 1445 01:10:18,160 --> 01:10:21,400 PARTNERS AND COLLABORATORS AS 1446 01:10:21,400 --> 01:10:23,640 THEY'VE SEEN FIT TO FOSTER 1447 01:10:23,640 --> 01:10:25,440 COMMUNICATION AROUND AREAS AND 1448 01:10:25,440 --> 01:10:28,360 THEMES GIVEN WE HAVE SUCH A 1449 01:10:28,360 --> 01:10:36,160 LARGE REPERTOIRE OF SCIENTIFIC 1450 01:10:36,160 --> 01:10:37,800 INTERESTS. 1451 01:10:37,800 --> 01:10:42,160 WE HAVE GROUPS OVERSEEN BY A 1452 01:10:42,160 --> 01:10:42,880 NUMBER ASSOCIATE SCIENTIFIC 1453 01:10:42,880 --> 01:10:44,680 DIRECTORS AND SORT OF OVERSEE 1454 01:10:44,680 --> 01:10:45,440 THE SCIENTIFIC MANAGEMENT AND 1455 01:10:45,440 --> 01:10:50,840 SHARED RESOURCES OF THE BUILDING 1456 01:10:50,840 --> 01:10:54,080 AND THINGS LIKE SERVICE 1457 01:10:54,080 --> 01:10:55,200 CONTRACTS BUT DON'T OVERSEE 1458 01:10:55,200 --> 01:10:56,720 INDIVIDUAL LAB BUDGETS. 1459 01:10:56,720 --> 01:10:59,440 BOTH AFFINITY GROUP MEMBERS AND 1460 01:10:59,440 --> 01:11:00,160 ASSOCIATE SCIENCE DIRECTORS PLAY 1461 01:11:00,160 --> 01:11:03,680 A ROLE IN MENTORING TENURE TRACK 1462 01:11:03,680 --> 01:11:04,000 INVESTIGATORS. 1463 01:11:04,000 --> 01:11:06,040 ONE OF THE INITIATIVES WE'VE 1464 01:11:06,040 --> 01:11:08,920 TAKEN SERIOUSLY IS HAVING 1465 01:11:08,920 --> 01:11:13,320 INCOMING TENURE TRACK 1466 01:11:13,320 --> 01:11:13,880 INVESTIGATORS IMMEDIATELY 1467 01:11:13,880 --> 01:11:14,600 ESTABLISH COMMITTEES AROUND THE 1468 01:11:14,600 --> 01:11:18,160 RESEARCH PROGRAM AND THE PRIMARY 1469 01:11:18,160 --> 01:11:22,600 MENTOR IS THE ASSOCIATE 1470 01:11:22,600 --> 01:11:24,200 SCIENTIFIC DIRECTOR OR THE HEAD 1471 01:11:24,200 --> 01:11:28,080 OF THEIR AFFINITY GROUP OR ANY 1472 01:11:28,080 --> 01:11:30,080 OTHER PERSON OR THREE OR FOUR 1473 01:11:30,080 --> 01:11:33,480 MEMBERS INSIDE OR OUTSIDE THE 1474 01:11:33,480 --> 01:11:35,680 I.C. 1475 01:11:35,680 --> 01:11:38,320 WE FOUND GETTING THE BALL 1476 01:11:38,320 --> 01:11:43,200 ROLLING WHEN IT HITS THE GROUND 1477 01:11:43,200 --> 01:11:44,520 HAS BEEN INFLUENTIAL IN GETTING 1478 01:11:44,520 --> 01:11:44,960 THEM ESTABLISHED. 1479 01:11:44,960 --> 01:11:46,560 AS A SCIENTIFIC DIRECTOR I 1480 01:11:46,560 --> 01:11:47,640 WORKED WITH EACH P.I. ON THEIR 1481 01:11:47,640 --> 01:11:48,760 BUDGET AND RESOURCES NEEDED. 1482 01:11:48,760 --> 01:11:51,920 PART OF OUR RESTRUCTURING ABOUT 1483 01:11:51,920 --> 01:11:55,160 A DECADE AGO DID AWAY WITH THE 1484 01:11:55,160 --> 01:11:56,880 IMMEDIATE LEVEL WHERE P.I.s HAD 1485 01:11:56,880 --> 01:11:59,640 TO GO TO THEIR PROGRAM CHIEF OR 1486 01:11:59,640 --> 01:12:04,320 LAB CHIEF TO DISCUSS BUDGET AND 1487 01:12:04,320 --> 01:12:05,480 RESOURCES AND CAN WORK DIRECTLY 1488 01:12:05,480 --> 01:12:09,480 WITH ME ON THE BUDGET AND 1489 01:12:09,480 --> 01:12:12,440 RESOURCES AS THEY SEE FIT. 1490 01:12:12,440 --> 01:12:16,720 IN ADDITION TO THE ESDs FOR 1491 01:12:16,720 --> 01:12:18,120 DIFFERENT BUILDING AS AND THE 1492 01:12:18,120 --> 01:12:20,000 NIH CAMPUS WE HAVE THOSE THAT 1493 01:12:20,000 --> 01:12:21,360 MANAGE ADMINISTRATIVE PORTFOLIO 1494 01:12:21,360 --> 01:12:21,840 SUCH AS BUDGET AND 1495 01:12:21,840 --> 01:12:23,040 ADMINISTRATION AND RECRUITMENT 1496 01:12:23,040 --> 01:12:23,920 AND RETENTION. 1497 01:12:23,920 --> 01:12:25,960 I'LL TELL YOU A LITTLE BIT ABOUT 1498 01:12:25,960 --> 01:12:27,760 THE INITIATIVES WE HAVE 1499 01:12:27,760 --> 01:12:29,320 ESTABLISHED OVER THE LAST YEAR 1500 01:12:29,320 --> 01:12:30,200 AND CONSIDERING THE LATTER ON 1501 01:12:30,200 --> 01:12:35,480 RECRUITMENT AND RETENTION. 1502 01:12:35,480 --> 01:12:36,920 WE'VE INTRODUCED TWO POSITIONS 1503 01:12:36,920 --> 01:12:39,320 THIS YEAR ONE FOR TRANSLATIONAL 1504 01:12:39,320 --> 01:12:40,160 RESEARCH. 1505 01:12:40,160 --> 01:12:44,240 THIS IS A MAJOR EFFORT UNDERWAY 1506 01:12:44,240 --> 01:12:48,200 TO TRY AND FOSTER AN INTERACTIVE 1507 01:12:48,200 --> 01:12:53,440 AND INTERCOLLABORATIVE EFFORT 1508 01:12:53,440 --> 01:12:54,120 BETWEEN INSTITUTES AND 1509 01:12:54,120 --> 01:12:54,920 INVESTIGATORS. 1510 01:12:54,920 --> 01:12:58,720 DANNY PORTER WHO HAS TAKEN ON 1511 01:12:58,720 --> 01:13:04,280 THE ROLE AS OUR ASD HAS MADE 1512 01:13:04,280 --> 01:13:07,160 GREAT INROADS IN BRINGING 1513 01:13:07,160 --> 01:13:08,600 TOGETHER LABS TO BENEFIT FROM 1514 01:13:08,600 --> 01:13:09,480 THE INTERACTION. 1515 01:13:09,480 --> 01:13:17,440 AS DIANA, MENTIONED WE'RE TAKING 1516 01:13:17,440 --> 01:13:19,440 OUR DIVERSITY TASK SERIOUSLY AND 1517 01:13:19,440 --> 01:13:20,280 HAVE A NEW SCIENTIFIC DIRECTOR 1518 01:13:20,280 --> 01:13:30,000 FOR ADIA. 1519 01:13:30,000 --> 01:13:33,000 AND THEY TYPICALLY SPAN ABOUT 12 1520 01:13:33,000 --> 01:13:37,960 END GROUPS SOP ARE QUITE LARGE 1521 01:13:37,960 --> 01:13:48,160 WITH MORE THAN THAT AND I 1522 01:13:48,160 --> 01:13:52,960 RECENTLY MELT -- MET WITH THE 1523 01:13:52,960 --> 01:13:54,520 AFFINITY GROUPS AND TALKED ABOUT 1524 01:13:54,520 --> 01:13:56,000 WHAT COULD BE DONE BETTER AND 1525 01:13:56,000 --> 01:13:57,760 WE'RE AT A POINT WHERE WE 1526 01:13:57,760 --> 01:13:59,640 UNDERSTAND WE NEED TO JUGGLE 1527 01:13:59,640 --> 01:14:01,480 THIS ORGANIZATION A LITTLE MORE 1528 01:14:01,480 --> 01:14:04,440 AND INCORPORATE SOME OF THE 1529 01:14:04,440 --> 01:14:07,800 SMALLER AFFINITY GROUPS TO ALLOW 1530 01:14:07,800 --> 01:14:08,400 MORE TRANSITIONING AND 1531 01:14:08,400 --> 01:14:10,920 VISIBILITY BETWEEN AFFINITY 1532 01:14:10,920 --> 01:14:11,160 GROUPS. 1533 01:14:11,160 --> 01:14:14,000 FOR THE MOST PART THEY'VE BEEN 1534 01:14:14,000 --> 01:14:15,160 INCREDIBLY HELPFUL FOR 1535 01:14:15,160 --> 01:14:17,480 SCIENTISTS AND TRAINEE TO 1536 01:14:17,480 --> 01:14:19,200 INTERACT WITH PEOPLE DOING 1537 01:14:19,200 --> 01:14:21,360 LIKE-MINDED SCIENCE BUT IN SOME 1538 01:14:21,360 --> 01:14:24,480 WAYS BEING AN INSTITUTE WITH A 1539 01:14:24,480 --> 01:14:25,560 VERY BROAD RANGE OF SCIENCE 1540 01:14:25,560 --> 01:14:27,760 THESE ARE HELPED FOSTER AN 1541 01:14:27,760 --> 01:14:29,480 EDUCATION OF WHAT SCIENCE WE'RE 1542 01:14:29,480 --> 01:14:32,280 DOING INSIDE THE DIR AS WELL AS 1543 01:14:32,280 --> 01:14:33,440 FOSTERING COLLABORATIONS BETWEEN 1544 01:14:33,440 --> 01:14:34,760 THE DIFFERENT P.I.s. 1545 01:14:34,760 --> 01:14:37,440 THEY'VE BEEN HELPFUL BUT IT'S 1546 01:14:37,440 --> 01:14:40,040 STILL A WORK IN PROGRESS. 1547 01:14:40,040 --> 01:14:42,600 I HOPEFUL CONTINUE TO SHAPE THE 1548 01:14:42,600 --> 01:14:44,360 MEMBERSHIP OF EACH OF THESE 1549 01:14:44,360 --> 01:14:45,120 AFFINITY GROUPS. 1550 01:14:45,120 --> 01:14:49,480 IN TERMS OF BUDGET AND PERSONNEL 1551 01:14:49,480 --> 01:14:50,680 ISSUES, THE DIVISION OF 1552 01:14:50,680 --> 01:14:52,720 INTRAMURAL RESEARCH INCORPORATED 1553 01:14:52,720 --> 01:14:55,800 ABOUT 14% OF THE OVER ALL 1554 01:14:55,800 --> 01:14:58,120 ALLOCATION TO HE NICHD. 1555 01:14:58,120 --> 01:14:59,800 -- THE NICHD. 1556 01:14:59,800 --> 01:15:03,480 OF THAT WE'RE ABOUT $215 MILLION 1557 01:15:03,480 --> 01:15:11,040 AND APPROXIMATELY 40% OF THAT 1558 01:15:11,040 --> 01:15:13,480 GOES TO LAB CONSUMABLES AND 1559 01:15:13,480 --> 01:15:18,560 SALARIES AND ABOUT 40% TO 1560 01:15:18,560 --> 01:15:21,120 CLINICAL CENTER ASSESSMENT AND 1561 01:15:21,120 --> 01:15:22,720 SUPPLY FUNDS AND THIS GOES TO 1562 01:15:22,720 --> 01:15:24,200 OVERHEAD AND DON'T HAVE CONTROL 1563 01:15:24,200 --> 01:15:27,600 HOW THAT IS USED AND IT'S USED 1564 01:15:27,600 --> 01:15:29,240 ON CLINICAL CENTERS AND 1565 01:15:29,240 --> 01:15:32,320 INITIATIVES AND KEEPING THE 1566 01:15:32,320 --> 01:15:34,400 LIGHTS ON AND SO FORTH. 1567 01:15:34,400 --> 01:15:37,320 OF THAT BUDGET, ONLY ABOUT 55% 1568 01:15:37,320 --> 01:15:40,920 OF THAT IS FLUID AND SALARIES 1569 01:15:40,920 --> 01:15:43,920 ARE A NEVER INCREASING ENTITY 1570 01:15:43,920 --> 01:15:47,560 AND THE ONLY PLACE WE'RE ABLE TO 1571 01:15:47,560 --> 01:15:49,720 GET RESPITE FROM THAT IS TO BITE 1572 01:15:49,720 --> 01:15:51,880 INTO THE BUDGETS FOR RESEARCH 1573 01:15:51,880 --> 01:15:53,480 LABS. 1574 01:15:53,480 --> 01:15:56,880 WE'RE CONSTANTLY AWARE OF 1575 01:15:56,880 --> 01:15:58,000 RE-EVALUATING HOW LABS ARE 1576 01:15:58,000 --> 01:15:59,080 FUNDED AND IT'S A HUGE 1577 01:15:59,080 --> 01:15:59,760 INITIATIVE IN EVERY ORGANIZATION 1578 01:15:59,760 --> 01:16:01,880 TO MAKE SURE THE MONEY AVAILABLE 1579 01:16:01,880 --> 01:16:04,600 FOR RESEARCH IS NOT COMPLETELY 1580 01:16:04,600 --> 01:16:06,080 OVERWHELMED BY THE 1581 01:16:06,080 --> 01:16:07,240 EVER-INCREASING SALARY COSTS. 1582 01:16:07,240 --> 01:16:09,480 WE HAVE A SMALL POOL OF MONEY 1583 01:16:09,480 --> 01:16:12,200 WHICH WE KEEP FOR RENOVATIONS AS 1584 01:16:12,200 --> 01:16:14,600 WELL AS EQUIPMENT AND THEY TEND 1585 01:16:14,600 --> 01:16:22,320 TO FLUCTUATE AND WE CAN BUY $1 1586 01:16:22,320 --> 01:16:23,640 MILLION AND $3 MILLION IN 1587 01:16:23,640 --> 01:16:29,160 CAPITAL EQUIPMENT AS THE YEAR 1588 01:16:29,160 --> 01:16:29,480 PROGRESSES. 1589 01:16:29,480 --> 01:16:31,920 THOSE NUMBERS DIDN'T INCLUDE THE 1590 01:16:31,920 --> 01:16:34,120 DIFFERENT BUDGET AND ABOUT $20 1591 01:16:34,120 --> 01:16:36,160 MILLION INCLUDED IN R&D FUNDING 1592 01:16:36,160 --> 01:16:42,200 WHICH IS FOR CONTRACEPTIVE 1593 01:16:42,200 --> 01:16:43,680 DEVELOPMENT AND OTHER R&D 1594 01:16:43,680 --> 01:16:54,120 BUDGETS EMBEDDED IN SITE. 1595 01:16:58,320 --> 01:17:01,480 WE HAVE HALF A NUMBER OF 1596 01:17:01,480 --> 01:17:04,040 POST-DOCS UPWARDS OF 4-6 YEARS. 1597 01:17:04,040 --> 01:17:12,520 WE HAVE CLOSE TO 100 POST-BACS 1598 01:17:12,520 --> 01:17:15,120 AND WE HAVE GRADUATE STUDENTS 1599 01:17:15,120 --> 01:17:19,320 AND THERE'S MORE INCOMING AND 14 1600 01:17:19,320 --> 01:17:21,440 CLINICAL FELLOWS. 1601 01:17:21,440 --> 01:17:24,120 THIS YEAR WE HAD OUR FIRST 1602 01:17:24,120 --> 01:17:27,000 IN-PERSON SUMMER INTERNSHIP 1603 01:17:27,000 --> 01:17:28,280 PROGRAM IN YEARS. 1604 01:17:28,280 --> 01:17:30,200 IT WAS A HYBRID MODEL WITH SOME 1605 01:17:30,200 --> 01:17:33,080 THAT DIDN'T NEED TO BE IN LABS 1606 01:17:33,080 --> 01:17:34,720 WORKING VIRTUALLY BUT THE VAST 1607 01:17:34,720 --> 01:17:36,920 MAJORITY WERE BACK IN PERSON IN 1608 01:17:36,920 --> 01:17:37,120 LABS. 1609 01:17:37,120 --> 01:17:39,200 THAT WAS INCREDIBLY SUCCESSFUL 1610 01:17:39,200 --> 01:17:41,360 TO HAVE PEOPLE BACK ON CAMPUS 1611 01:17:41,360 --> 01:17:45,080 AGAIN DOING SUMMER INTERNSHIP 1612 01:17:45,080 --> 01:17:46,920 AND HAD ABOUT 50 WHICH IS A 1613 01:17:46,920 --> 01:17:48,560 USUAL AVERAGE NUMBER FOR OUR 1614 01:17:48,560 --> 01:17:50,080 SUMMER INTERN PROGRAM SO I KIND 1615 01:17:50,080 --> 01:17:51,600 OF FEEL LIKE WE'RE ALMOST BACK 1616 01:17:51,600 --> 01:17:52,840 TO FULL STRENGTH ON OUR 1617 01:17:52,840 --> 01:17:56,440 INTERNSHIP PROGRAM. 1618 01:17:56,440 --> 01:18:05,160 THERE'LL BE A NUMBER OF STAFF 1619 01:18:05,160 --> 01:18:05,480 CHANGES. 1620 01:18:05,480 --> 01:18:09,400 WE HAD AN ACTING DIRECTOR AND 1621 01:18:09,400 --> 01:18:11,760 WAS PREVIOUSLY THE DEPUTY 1622 01:18:11,760 --> 01:18:16,160 DIRECTOR AND SHE'S A PERINATAL 1623 01:18:16,160 --> 01:18:17,320 EPIDEMIOLOGIST FOCUSSING ON 1624 01:18:17,320 --> 01:18:20,120 FETAL GROWTH AND PREGNANCY 1625 01:18:20,120 --> 01:18:24,200 OUTCOMES WITH A RELATION TO 1626 01:18:24,200 --> 01:18:24,720 MATERNAL INTEREST. 1627 01:18:24,720 --> 01:18:28,760 AND WE HAVE AN ACTING CLINICAL 1628 01:18:28,760 --> 01:18:29,040 DIRECTOR. 1629 01:18:29,040 --> 01:18:32,120 SO DANNY PORTER OUR PREVIOUS 1630 01:18:32,120 --> 01:18:32,800 CLINICAL DIRECTOR STEPPED DOWN 1631 01:18:32,800 --> 01:18:35,520 FROM A ROLE IN MARCH OF THIS 1632 01:18:35,520 --> 01:18:36,280 YEAR. 1633 01:18:36,280 --> 01:18:38,880 HE HAD SERVED IN THAT ROLE MORE 1634 01:18:38,880 --> 01:18:40,320 THAN 11 YEARS. 1635 01:18:40,320 --> 01:18:43,800 I'M HAPPY TO SAY LA VERNE WHO 1636 01:18:43,800 --> 01:18:45,840 HAD BEEN SERVING SINCE 2020 1637 01:18:45,840 --> 01:18:47,320 GRACIOUSLY AGREED TO SERVE AS 1638 01:18:47,320 --> 01:18:48,400 THE NEW ACTING CLINIC DIRECTOR 1639 01:18:48,400 --> 01:18:50,560 UNTIL WE APPOINT A NEW DIRECTOR 1640 01:18:50,560 --> 01:18:53,400 AND A SEARCH IS CURRENTLY 1641 01:18:53,400 --> 01:18:55,000 UNDERWAY FOR A PERMANENT 1642 01:18:55,000 --> 01:19:00,200 CLINICAL DIRECTOR. 1643 01:19:00,200 --> 01:19:03,440 DR. MENSAH HAS UNIQUE 1644 01:19:03,440 --> 01:19:05,440 OPERATIONAL AND CLINICAL 1645 01:19:05,440 --> 01:19:11,040 RESEARCH EXPERIENCE. 1646 01:19:11,040 --> 01:19:13,680 WE'VE HAD A COUPLE ASSOCIATE 1647 01:19:13,680 --> 01:19:15,640 SCIENTIFIC DIRECTOR POSITIONS I 1648 01:19:15,640 --> 01:19:16,840 WANT TO SHARE WITH DANNY 1649 01:19:16,840 --> 01:19:22,760 STEPPING DOWN AND I WAS KEEN TO 1650 01:19:22,760 --> 01:19:26,880 USE EXPERTISE AND BRIDGE ROLES 1651 01:19:26,880 --> 01:19:28,440 BETWEEN BASIC AND CLINICAL 1652 01:19:28,440 --> 01:19:29,600 PROGRAMS AND WAS GLAD WHEN HE 1653 01:19:29,600 --> 01:19:33,600 WAS MADE THE ASD FOR CLINICAL 1654 01:19:33,600 --> 01:19:35,400 RESEARCH. 1655 01:19:35,400 --> 01:19:38,640 WE APPOINTED STEPHEN GILMAN AS 1656 01:19:38,640 --> 01:19:42,280 OUR EQUITY, DIVERSITY, INCLUSION 1657 01:19:42,280 --> 01:19:43,080 AND ACCESSIBILITY PERSON. 1658 01:19:43,080 --> 01:19:47,720 AND PART OF STEPHEN'S ROLE WAS 1659 01:19:47,720 --> 01:19:49,240 TO HELP DOVETAIL BETWEEN THE 1660 01:19:49,240 --> 01:19:52,400 REAP AND STRIVE INITIATIVES AND 1661 01:19:52,400 --> 01:20:00,320 HELP IN THE UNITE INITIATIVES. 1662 01:20:00,320 --> 01:20:08,720 HE'S TAKEN ON THE ROLE. 1663 01:20:08,720 --> 01:20:10,400 TWO NEW SCIENTIFIC DIRECTOR 1664 01:20:10,400 --> 01:20:11,320 POSITIONS WE'VE HAD TURN OVER IN 1665 01:20:11,320 --> 01:20:17,480 OUR RECRUITMENT AND RETENTION 1666 01:20:17,480 --> 01:20:25,520 AND WE HAVE A NEW ASD AND DEPUTY 1667 01:20:25,520 --> 01:20:31,320 ASD AND I ASKED THEM TO PUT 1668 01:20:31,320 --> 01:20:37,200 THEIR EMPHASIS ON RETENTION PART 1669 01:20:37,200 --> 01:20:41,440 AND FOCUS ON WAYS TO CHANGE OUR 1670 01:20:41,440 --> 01:20:44,640 CAREER DEVELOPMENT INSIDE ASD 1671 01:20:44,640 --> 01:20:48,280 AND TO LOOK TO TENURED AND 1672 01:20:48,280 --> 01:20:49,960 RECENTLY TENURED AND MID-CAREER 1673 01:20:49,960 --> 01:20:52,200 SCIENTISTS TO COME UP WITH 1674 01:20:52,200 --> 01:20:52,920 INITIATIVES TO INTRODUCE TO 1675 01:20:52,920 --> 01:20:58,200 CAREER COACHING AND THINKING 1676 01:20:58,200 --> 01:20:59,720 ABOUT REN MORING ROLES AND 1677 01:20:59,720 --> 01:21:09,480 TRYING TO COP UP WITH WAYS TO 1678 01:21:09,480 --> 01:21:17,480 ENGAGE THEM AS THEY AND I HAVE 1679 01:21:17,480 --> 01:21:19,760 STAFF SCIENTISTS AND THEY'RE 1680 01:21:19,760 --> 01:21:22,440 POPULATION IS TYPICALLY 1681 01:21:22,440 --> 01:21:23,680 OVERLOOKED IN THE CONVERSATIONS 1682 01:21:23,680 --> 01:21:26,920 AS FAR AS CAREER DEVELOPMENT AND 1683 01:21:26,920 --> 01:21:27,240 MENTORING. 1684 01:21:27,240 --> 01:21:29,240 AND IN FORMING THE NEW ASD 1685 01:21:29,240 --> 01:21:30,600 PARTNERSHIP WE STARTED A 1686 01:21:30,600 --> 01:21:33,320 COMMITTEE OF STAFF SCIENTIST TO 1687 01:21:33,320 --> 01:21:36,280 FIND OUT WHAT IT IS THEY FEEL 1688 01:21:36,280 --> 01:21:40,120 THEY'RE MISSING OR NEED. 1689 01:21:40,120 --> 01:21:41,480 SOME INITIATIVES IS TO HAVE 1690 01:21:41,480 --> 01:21:42,120 RETRAINING OPPORTUNITIES OR 1691 01:21:42,120 --> 01:21:45,160 LEARNING OF NEW TECHNIQUES 1692 01:21:45,160 --> 01:21:47,200 ACROSS LABS AND I.C.s AND 1693 01:21:47,200 --> 01:21:50,800 PROVIDING BETTER MENTORING AND 1694 01:21:50,800 --> 01:21:54,120 LEARNING SKILLS AND ESTABLISHING 1695 01:21:54,120 --> 01:21:57,480 A NEW AWARD SYSTEM SPECIFICALLY 1696 01:21:57,480 --> 01:22:00,280 FOR STAFF SCIENTISTS TO ALLOW 1697 01:22:00,280 --> 01:22:02,560 THEM TO TRAVEL TO MEETING AS 1698 01:22:02,560 --> 01:22:09,480 THEY WOULDN'T OTHER WISE BE 1699 01:22:09,480 --> 01:22:11,400 ALLOWED TO AND THIS IS FINALLY 1700 01:22:11,400 --> 01:22:15,200 GETTING SOME ATTENTION. 1701 01:22:15,200 --> 01:22:16,840 WE ALSO ESTABLISHED AN NICHD 1702 01:22:16,840 --> 01:22:18,400 AWARDS COMMITTEE. 1703 01:22:18,400 --> 01:22:19,800 THIS STEMMED FROM A CONVERSATION 1704 01:22:19,800 --> 01:22:24,200 I HAD WITH OTHER SCIENTIFIC 1705 01:22:24,200 --> 01:22:24,440 DIRECTORS. 1706 01:22:24,440 --> 01:22:26,160 WE DON'T DO A PARTICULARLY GREAT 1707 01:22:26,160 --> 01:22:31,080 JOB AT SHOWCASING AND 1708 01:22:31,080 --> 01:22:34,080 HIGHLIGHTING THE SCIENCE MANY OF 1709 01:22:34,080 --> 01:22:36,480 OUR INCREDIBLY TALENTED 1710 01:22:36,480 --> 01:22:41,920 SCIENTISTS DO AND PUT THEM 1711 01:22:41,920 --> 01:22:43,680 FORWARD FOR AWARDS AND WE WANTED 1712 01:22:43,680 --> 01:22:48,200 TO ENGAGE OUR P.I.s TO PROVIDE A 1713 01:22:48,200 --> 01:22:50,040 DATABASE OF POSSIBLE AWARDS OF 1714 01:22:50,040 --> 01:22:52,200 NOT ONLY STUDENTS AND POST-DOCS 1715 01:22:52,200 --> 01:22:55,840 BUT P.I.s WOULD BE ELIGIBLE FOR. 1716 01:22:55,840 --> 01:22:57,240 WE'VE ALREADY SEEN THE FRUITS OF 1717 01:22:57,240 --> 01:22:58,160 THE LABOR. 1718 01:22:58,160 --> 01:22:59,960 THIS HAS BEEN GOING THREE OR 1719 01:22:59,960 --> 01:23:05,480 FOUR MONTHS AND THIS COMMITTEE 1720 01:23:05,480 --> 01:23:07,880 RECENTLY LED THE NOMINATION AND 1721 01:23:07,880 --> 01:23:17,400 IT WAS JUST AWARDED THE AMERICAN 1722 01:23:17,400 --> 01:23:26,280 SOCIETY AND IT'S VERY ENGAGED 1723 01:23:26,280 --> 01:23:28,920 AND I HAVE BEEN BOWLED OVER BY 1724 01:23:28,920 --> 01:23:30,040 THE ENTHUSIASM THE INITIATIVES 1725 01:23:30,040 --> 01:23:35,560 HAVE BEEN MET WITH. 1726 01:23:35,560 --> 01:23:37,360 WE ALSO HAD STAFF CHANGES IN OUR 1727 01:23:37,360 --> 01:23:39,400 ANIMAL PROGRAM AND OUR ANIMAL 1728 01:23:39,400 --> 01:23:40,400 PROGRAM DIRECTOR AND SENIOR VET 1729 01:23:40,400 --> 01:23:43,840 STEPPED DOWN TO TAKE ON A CAREER 1730 01:23:43,840 --> 01:23:44,120 ELSEWHERE. 1731 01:23:44,120 --> 01:23:49,480 THAT WAS A HUGE LOSS FOR US. 1732 01:23:49,480 --> 01:23:52,280 FORTUNATELY, RACHEL LABITT WHO 1733 01:23:52,280 --> 01:23:54,680 WAS TRAINING IN HER DEPUTY HAS 1734 01:23:54,680 --> 01:23:57,480 STEPPED UP AND APPOINTED AS THE 1735 01:23:57,480 --> 01:23:58,160 SENIOR VETERINARIAN UNTIL WE 1736 01:23:58,160 --> 01:24:08,680 FIND A PERMANENT REPLACEMENT. 1737 01:24:10,880 --> 01:24:13,480 WE HAVE A BURGEONING NUMBER OF 1738 01:24:13,480 --> 01:24:17,480 INITIATIVES THE OFFICE UNDER 1739 01:24:17,480 --> 01:24:18,720 TAKES. 1740 01:24:18,720 --> 01:24:22,560 THIS SHOWS A BUNCH FLOW DIAGRAMS 1741 01:24:22,560 --> 01:24:24,080 OF THE TYPES OF PROGRAMS AND 1742 01:24:24,080 --> 01:24:24,920 INITIATIVE THE OFFICE OF 1743 01:24:24,920 --> 01:24:26,480 EDUCATION PROVIDE FROM 1744 01:24:26,480 --> 01:24:28,720 LEADERSHIP AND MANAGEMENT 1745 01:24:28,720 --> 01:24:29,480 TRAINING APPLYING FOR AND THE 1746 01:24:29,480 --> 01:24:31,880 INTRODUCING IDEAS OF RESEARCH 1747 01:24:31,880 --> 01:24:34,880 AWARDS, OFFERING TEACHING, NOT 1748 01:24:34,880 --> 01:24:36,240 ONLY INSIDE THE INTRAMURAL 1749 01:24:36,240 --> 01:24:39,000 PROGRAM BUT AT LOCAL 1750 01:24:39,000 --> 01:24:39,320 UNIVERSITIES. 1751 01:24:39,320 --> 01:24:40,440 CAREERS, RESEARCH ETHICS 1752 01:24:40,440 --> 01:24:46,600 TRAINING, COMMUNICATION, WE HAVE 1753 01:24:46,600 --> 01:24:49,480 A RETREAT AND PREPARING FOR 1754 01:24:49,480 --> 01:24:51,200 MEDICAL AND GRADUATE SCHOOL 1755 01:24:51,200 --> 01:24:53,120 APPLICATION AND GRANTS AND 1756 01:24:53,120 --> 01:24:53,360 WRITING. 1757 01:24:53,360 --> 01:24:57,120 THIS IS SPEARHEADED BY A FORMER 1758 01:24:57,120 --> 01:25:01,480 POST-DOC INSIDE THE INTRAMURAL 1759 01:25:01,480 --> 01:25:03,480 PROGRAM WHO BECAME THE DEPUTY OF 1760 01:25:03,480 --> 01:25:05,040 THE OFFICE OF EDUCATION AND 1761 01:25:05,040 --> 01:25:07,920 STEPPED UP TO BECOME THE 1762 01:25:07,920 --> 01:25:08,280 DIRECTOR. 1763 01:25:08,280 --> 01:25:13,360 SHE HAS AN INCREDIBLE ENERGY AND 1764 01:25:13,360 --> 01:25:22,120 HER PORTFOLIO IS EVER INCREASE 1765 01:25:22,120 --> 01:25:24,680 AND HAS DONE THINGS LIKE 1766 01:25:24,680 --> 01:25:26,280 PRACTICING FOR PUBLIC SPEAKING 1767 01:25:26,280 --> 01:25:29,560 AND TEACHING AND INCLUDING 1768 01:25:29,560 --> 01:25:31,440 THINGS LIKE JOB TALKS OR 1769 01:25:31,440 --> 01:25:33,480 INDIVIDUAL COACHING, 1770 01:25:33,480 --> 01:25:36,240 THREE-MINUTE ELEVATOR SPEECHES, 1771 01:25:36,240 --> 01:25:37,160 DEVELOPMENT ACROSS UNIVERSITIES 1772 01:25:37,160 --> 01:25:40,800 AND JUST TRYING TO ENGAGE ALL 1773 01:25:40,800 --> 01:25:42,800 TRAINEES AT ALL LEVELS IN BEING 1774 01:25:42,800 --> 01:25:45,040 ABLE TO SPEAK PUBLICLY AND TALK 1775 01:25:45,040 --> 01:25:50,160 DURING THEIR MONTHLY P.I. 1776 01:25:50,160 --> 01:25:50,560 MEETINGS. 1777 01:25:50,560 --> 01:26:00,720 WE HAVE MANY MANY AND WE HAVE 1778 01:26:00,720 --> 01:26:05,160 FUNDING AND PRACTICE FOR JOB 1779 01:26:05,160 --> 01:26:07,840 INTERVIEWS PREPARATION AND HOW 1780 01:26:07,840 --> 01:26:10,600 TO NETWORK AND INDIVIDUALIZED 1781 01:26:10,600 --> 01:26:11,920 GUIDANCE AND SO FORTH. 1782 01:26:11,920 --> 01:26:13,640 IT'S INCREDIBLY LABOR INTENSIVE 1783 01:26:13,640 --> 01:26:17,480 AND ERIN AND HER STAFF HAVE 1784 01:26:17,480 --> 01:26:25,520 TAKEN TO THESE. 1785 01:26:25,520 --> 01:26:27,480 AND WE'VE TRIED TO TRANSITION 1786 01:26:27,480 --> 01:26:29,880 BACK TO REASONABLE OCCUPANCY IN 1787 01:26:29,880 --> 01:26:31,280 LABS ON CAMPUS. 1788 01:26:31,280 --> 01:26:33,600 IT BECAME CLEAR AS ALL ARE AWARE 1789 01:26:33,600 --> 01:26:35,600 WE ALREADY HAD A SHORT BRIEF 1790 01:26:35,600 --> 01:26:37,480 CONVERSATION ABOUT MENTAL HEALTH 1791 01:26:37,480 --> 01:26:40,080 ISSUES ACROSS OUR TRAINEES BUT 1792 01:26:40,080 --> 01:26:43,320 IT BECAME CLEAR THAT A LOT OF 1793 01:26:43,320 --> 01:26:46,360 OUR YOUNG TRAINEES IN PARTICULAR 1794 01:26:46,360 --> 01:26:50,600 POST-DOCS AND POST-BACS HAVE 1795 01:26:50,600 --> 01:26:53,440 SUFFERED FROM BEING IN ISOLATION 1796 01:26:53,440 --> 01:26:55,800 AND HAVING LIMITED INTERACTION 1797 01:26:55,800 --> 01:26:58,400 FROM HER LAB AND I ASKED ERIN 1798 01:26:58,400 --> 01:27:08,560 AND HER DEPPY -- DEPUTY TO MEET 1799 01:27:08,560 --> 01:27:12,560 WITH POST-BACS AND SO ON AND 1800 01:27:12,560 --> 01:27:16,680 UPWARDS OF 300 INDIVIDUALS AND I 1801 01:27:16,680 --> 01:27:18,240 NEVER OCCURRED TO ME HOW LONG 1802 01:27:18,240 --> 01:27:21,440 AND HOW MANY TIMES MEETING WITH 1803 01:27:21,440 --> 01:27:24,160 300 PEOPLE AND WHAT A HERCULEAN 1804 01:27:24,160 --> 01:27:26,320 EFFORT IT WILL TAKE TO PULL THAT 1805 01:27:26,320 --> 01:27:26,480 OFF. 1806 01:27:26,480 --> 01:27:30,280 OVER THE COURSE OF MONTHS, ERIN 1807 01:27:30,280 --> 01:27:33,600 AND TERESA MET WITH EVERY SINGLE 1808 01:27:33,600 --> 01:27:34,760 INDIVIDUAL TRAINEE INSIDE OUR 1809 01:27:34,760 --> 01:27:38,520 I.C. 1810 01:27:38,520 --> 01:27:42,440 IT WAS A VERY A VERY INFORMATIVE 1811 01:27:42,440 --> 01:27:44,760 AND ILLUMINATING EXPERIENCE AND 1812 01:27:44,760 --> 01:27:46,080 WE COULD MAKE EDUCATED GUESTS 1813 01:27:46,080 --> 01:27:48,160 ABOUT THE ISSUES OUR TRAINEES 1814 01:27:48,160 --> 01:27:49,120 WERE SUFFERING FROM BUT MANY 1815 01:27:49,120 --> 01:27:53,520 THINGS WE LEARNED AND WERE TOLD 1816 01:27:53,520 --> 01:27:55,360 AND WERE TAKEN BY SURPRISE BY. 1817 01:27:55,360 --> 01:28:01,840 THIS WAS A MAJOR UNDERTAKING AND 1818 01:28:01,840 --> 01:28:05,080 WE'RE ON OUR SECOND YEAR OF 1819 01:28:05,080 --> 01:28:07,120 GOING THROUGH THE EXERCISE AND I 1820 01:28:07,120 --> 01:28:09,800 KNOW ERIN STARTED SETTING UP FOR 1821 01:28:09,800 --> 01:28:14,240 INTERVIEWING TRAINEES. 1822 01:28:14,240 --> 01:28:17,160 THIS IS THE LEVEL OF INTERACTION 1823 01:28:17,160 --> 01:28:17,960 WITH TRAINEES. 1824 01:28:17,960 --> 01:28:21,400 WE DO A LARGE NUMBER OF WEBINARS 1825 01:28:21,400 --> 01:28:24,240 WITH INDUSTRY JOBS AND OTHER 1826 01:28:24,240 --> 01:28:27,000 OUTSIDE REGULAR AND P.I. OR LAB 1827 01:28:27,000 --> 01:28:29,440 CHIEF AND SCIENTIFIC CAREERS. 1828 01:28:29,440 --> 01:28:31,600 WE HAVE ANNUAL GRANT WRITING 1829 01:28:31,600 --> 01:28:31,840 WORKSHOPS. 1830 01:28:31,840 --> 01:28:35,800 WE INITIATED WITH OTHER I.C.s A 1831 01:28:35,800 --> 01:28:36,880 THREE-MINUTE TALK A COMPETITIVE 1832 01:28:36,880 --> 01:28:38,120 COMPETITION THAT STARTED OFF 1833 01:28:38,120 --> 01:28:40,200 WITH THREE INSTITUTES AND NOW 1834 01:28:40,200 --> 01:28:41,520 EXPANDED TO 12 INSTITUTES. 1835 01:28:41,520 --> 01:28:48,240 IT'S AN INCREDIBLY FUN 1836 01:28:48,240 --> 01:28:48,560 UNDERTAKING. 1837 01:28:48,560 --> 01:28:52,960 EACH TRAINEE GETS A NUMBER OF 1838 01:28:52,960 --> 01:28:54,680 HOURS WITH A SPEAKING COACH AND 1839 01:28:54,680 --> 01:28:55,720 PRESENTATION DOWN TO THREE 1840 01:28:55,720 --> 01:28:58,640 MINUTES AND ONE SLIDE AND 1841 01:28:58,640 --> 01:29:00,240 COMPETE AGAINST EACH OTHER AND 1842 01:29:00,240 --> 01:29:01,440 IT STARTED WITH THREE 1843 01:29:01,440 --> 01:29:01,760 INSTITUTES. 1844 01:29:01,760 --> 01:29:03,360 WE NOW HAVE 12. 1845 01:29:03,360 --> 01:29:08,960 IT'S AN INCREDIBLY FUN 1846 01:29:08,960 --> 01:29:09,480 EXPERIENCE. 1847 01:29:09,480 --> 01:29:16,320 WE'RE JUST ABOUT TO HAVE OUR NIH 1848 01:29:16,320 --> 01:29:18,280 FELLOWS AWARD AND IT WENT TO 1849 01:29:18,280 --> 01:29:19,680 FOUR FELLOWS. 1850 01:29:19,680 --> 01:29:23,360 IT'S IN ITS FIFTH CYCLE AND 1851 01:29:23,360 --> 01:29:24,600 WE'RE CURRENTLY DEVELOPING AN 1852 01:29:24,600 --> 01:29:29,160 ANNUAL PROGRESS REPORT SYSTEM 1853 01:29:29,160 --> 01:29:33,480 THAT INCLUDES OUR POSTBAC 1854 01:29:33,480 --> 01:29:36,080 FELLOWSHIP AND WE HAVEN'T DONE 1855 01:29:36,080 --> 01:29:36,800 SOMETHING SIMILAR FOR OTHERS AND 1856 01:29:36,800 --> 01:29:40,280 WE'RE ABOUT TO CHANGE THAT AND 1857 01:29:40,280 --> 01:29:42,280 WE'RE ALWAYS CURIOUS TO SPEAK TO 1858 01:29:42,280 --> 01:29:48,280 TRAINEES AS THEY LEAVE THE NIH. 1859 01:29:48,280 --> 01:29:50,400 WE WANT TO HEAR ABOUT THEIR 1860 01:29:50,400 --> 01:29:51,680 EXPERIENCES GOOD AND BAD AND 1861 01:29:51,680 --> 01:29:55,360 CONSIDERING AN EXIT SURVEY. 1862 01:29:55,360 --> 01:29:56,720 THE LAST THING I WANT TO SPEND 1863 01:29:56,720 --> 01:29:58,560 TIME ON IS TALKING ABOUT OUR 1864 01:29:58,560 --> 01:30:03,440 HOWARD UNIVERSITY PARTNERSHIP. 1865 01:30:03,440 --> 01:30:06,240 THIS WAS AN AGREEMENT ENTERED 1866 01:30:06,240 --> 01:30:09,240 WITH HOWARD UNIVERSITY BY THE 1867 01:30:09,240 --> 01:30:10,840 NIH AT LARGE IN THE CLINICAL 1868 01:30:10,840 --> 01:30:13,160 CENTER BACK IN 2019 AND THE 1869 01:30:13,160 --> 01:30:15,160 INTENT WAS TO FACILITATE A MODEL 1870 01:30:15,160 --> 01:30:16,080 NETWORK FOR RESEARCH 1871 01:30:16,080 --> 01:30:17,080 COLLABORATIONS AND TRAINING. 1872 01:30:17,080 --> 01:30:18,600 WE HAVE OTHER INSTITUTES THAT WE 1873 01:30:18,600 --> 01:30:20,800 ARE ALSO INVOLVED WITH AT THE 1874 01:30:20,800 --> 01:30:22,440 UNIVERSITY OF MARYLAND AND 1875 01:30:22,440 --> 01:30:22,920 VIRGINIA COMMONWEALTH 1876 01:30:22,920 --> 01:30:30,160 UNIVERSITY. 1877 01:30:30,160 --> 01:30:31,760 WE'RE INVOLVED WITH FOUR MAJOR 1878 01:30:31,760 --> 01:30:32,760 INITIATIVES WITH HOWARD. 1879 01:30:32,760 --> 01:30:35,040 ONE IS THE COLLEGE OF ARTS AND 1880 01:30:35,040 --> 01:30:36,240 SCIENCES THE BIOLOGY HONOR 1881 01:30:36,240 --> 01:30:37,920 PROGRAM WHERE WE PROVIDE 1882 01:30:37,920 --> 01:30:40,720 SECONDARY RESEARCH MENTORSHIP. 1883 01:30:40,720 --> 01:30:42,080 WE HAVE P.I.s THAT PROVIDE 1884 01:30:42,080 --> 01:30:44,240 STUDENTS THE OPPORTUNITY FOR A 1885 01:30:44,240 --> 01:30:49,240 TWO-YEAR PERIOD OF ADVANCED 1886 01:30:49,240 --> 01:30:55,840 MENTORING INSTRUCTION. 1887 01:30:55,840 --> 01:30:58,880 AND COORDINATED WITH OUR SUMMER 1888 01:30:58,880 --> 01:31:00,560 INTERNSHIP PROGRAM SO THERE'S 1889 01:31:00,560 --> 01:31:01,480 CONTINUITY THROUGH THEIR 1890 01:31:01,480 --> 01:31:03,040 ACADEMIC YEAR AND HAD FOUR 1891 01:31:03,040 --> 01:31:04,960 STUDENTS STARTED LAST YEAR AND 1892 01:31:04,960 --> 01:31:05,920 THEY'RE GOING TO CONTINUE INTO 1893 01:31:05,920 --> 01:31:09,480 THEIR SECOND YEAR AND HAVE A NEW 1894 01:31:09,480 --> 01:31:13,440 CYCLE OF SIX STUDENTS NOW PAIRED 1895 01:31:13,440 --> 01:31:23,880 WITH MEMBERS IN THE DIR. 1896 01:31:24,320 --> 01:31:27,560 AND MENTORS TO THREE AND FOUR 1897 01:31:27,560 --> 01:31:29,960 MEDICAL STUDENTS AND HAVE ONE 1898 01:31:29,960 --> 01:31:37,360 PAIRING CONFIRMED FOR LAST YEAR. 1899 01:31:37,360 --> 01:31:38,960 WE HAVE SEVERAL FOR P.I.s GIVING 1900 01:31:38,960 --> 01:31:44,080 LECTURES AND PRESENT TO THE 1901 01:31:44,080 --> 01:31:54,640 STUDENTS THERE AND RAN INTO THE 1902 01:31:55,840 --> 01:32:00,640 NINDS OFFICE OF EDUCATION AND 1903 01:32:00,640 --> 01:32:02,600 WAS OUR DIRECTOR BEFORE SHE 1904 01:32:02,600 --> 01:32:05,920 MOVED TO NINDS. 1905 01:32:05,920 --> 01:32:10,960 YVETTE AND OTHERS STARTED A 1906 01:32:10,960 --> 01:32:12,400 SIX-WEEK SEMINAR SERIES LAUNCHED 1907 01:32:12,400 --> 01:32:17,600 OVER THE COURSE OF THE LAST 1908 01:32:17,600 --> 01:32:22,000 YEAR. 1909 01:32:22,000 --> 01:32:24,240 AND IT GIVES EXPOSURE TO MEDICAL 1910 01:32:24,240 --> 01:32:27,480 AND RESEARCH CAREERS AND PROVIDE 1911 01:32:27,480 --> 01:32:29,480 GUIDANCE HOW TO PROCEED WITH THE 1912 01:32:29,480 --> 01:32:30,280 ADMISSIONS PROCESS. 1913 01:32:30,280 --> 01:32:33,480 ABOUT A MONTH AGO STEVEN GILMAN 1914 01:32:33,480 --> 01:32:36,280 AND MYSELF MET WITH THE DOZEN OR 1915 01:32:36,280 --> 01:32:37,720 SO STUDENTS THAT HAD TAKEN THIS 1916 01:32:37,720 --> 01:32:39,920 COURSE FOR THE SECOND TIME. 1917 01:32:39,920 --> 01:32:43,280 WE RAN IT FOR THE FIRST TIME A 1918 01:32:43,280 --> 01:32:45,880 YEAR AGO IN JULY AND RAN IT 1919 01:32:45,880 --> 01:32:48,000 AGAIN THIS YEAR AND THIS TIME WE 1920 01:32:48,000 --> 01:32:49,040 HAD 12 STUDENTS AND THEY WERE 1921 01:32:49,040 --> 01:32:52,000 GIVEN THE OPPORTUNITY TO HAVE A 1922 01:32:52,000 --> 01:32:54,240 FIVE-MINUTE PRESENTATION AND ONE 1923 01:32:54,240 --> 01:32:56,000 SLIDE AND THE LEVEL OF 1924 01:32:56,000 --> 01:32:57,880 ENTHUSIASM FROM THE STUDENTS WAS 1925 01:32:57,880 --> 01:32:58,240 OVERWHELMING. 1926 01:32:58,240 --> 01:33:01,160 IT WAS ONE OF THE MOST FUN 1927 01:33:01,160 --> 01:33:04,160 EXPERIENCES I CAN SAY I'VE HAD 1928 01:33:04,160 --> 01:33:07,120 AS ACTING SCIENTIFIC DIRECTOR. 1929 01:33:07,120 --> 01:33:10,920 THEY'RE ENTHUSIASM WAS LEAPING 1930 01:33:10,920 --> 01:33:11,760 OFF THE SCREEN. 1931 01:33:11,760 --> 01:33:15,440 AND WHAT WAS INFORMATIVE IS ALL 1932 01:33:15,440 --> 01:33:17,360 OF THEM HAD PRETTY MUCH COME 1933 01:33:17,360 --> 01:33:20,080 INTO THE PROGRAM THINKING THEY 1934 01:33:20,080 --> 01:33:22,000 KNEW WHAT THEY'RE CAREER PLAN OR 1935 01:33:22,000 --> 01:33:23,080 CAREER PATH WAS GOING TO BE. 1936 01:33:23,080 --> 01:33:26,760 AND BY THE TIME THEY LEFT, THEY 1937 01:33:26,760 --> 01:33:28,560 HAD COMPLETELY DONE AN ABOUT 1938 01:33:28,560 --> 01:33:31,720 TURN AND THOUGHT ABOUT FIELDS OF 1939 01:33:31,720 --> 01:33:33,400 RESEARCH AND CAREERS THEY HAD 1940 01:33:33,400 --> 01:33:35,800 NEVER REALLY EVEN THOUGHT ABOUT 1941 01:33:35,800 --> 01:33:37,080 OR BEEN EXPOSED TO. 1942 01:33:37,080 --> 01:33:40,200 IT WAS AN INCREDIBLY GRATIFYING 1943 01:33:40,200 --> 01:33:43,160 OPPORTUNITY TO LISTEN TO A DOZEN 1944 01:33:43,160 --> 01:33:45,960 OR SO STUDENTS ABOUT TO EMBARK 1945 01:33:45,960 --> 01:33:50,280 ON THEIR CAREERS IT WAS A REAL 1946 01:33:50,280 --> 01:33:51,360 SUCCESS FROM THE OFFICE OF 1947 01:33:51,360 --> 01:33:51,800 EDUCATION. 1948 01:33:51,800 --> 01:33:53,920 AND WITH THAT I'LL LEAVE IT AND 1949 01:33:53,920 --> 01:33:54,760 HAPPY TO ANSWER ANY QUESTIONS 1950 01:33:54,760 --> 01:34:05,120 ANY OF YOU MAY HAVE. 1951 01:34:13,080 --> 01:34:14,960 >> IT'S GREAT TO HEAR HOW THINGS 1952 01:34:14,960 --> 01:34:15,640 ARE GOING IN THE INTRAMURAL 1953 01:34:15,640 --> 01:34:17,520 PROGRAM AND CONGRATULATIONS. 1954 01:34:17,520 --> 01:34:19,840 I LIKE THE LAST PROGRAM YOU AND 1955 01:34:19,840 --> 01:34:22,480 THOUGHT IT WAS SPECTACULAR TO DO 1956 01:34:22,480 --> 01:34:25,920 IT WITH THE OB-GYN INTEREST 1957 01:34:25,920 --> 01:34:26,120 GROUP. 1958 01:34:26,120 --> 01:34:27,480 WHAT ABOUT PEDIATRIC INTEREST 1959 01:34:27,480 --> 01:34:29,480 GROUP? 1960 01:34:29,480 --> 01:34:37,840 IS THAT A POSSIBILITY? 1961 01:34:37,840 --> 01:34:39,960 NOW THAT YOU HAVE ONE AREA CAN 1962 01:34:39,960 --> 01:34:41,480 YOU ADD ANOTHER AREA? 1963 01:34:41,480 --> 01:34:44,440 >> THE NUMBER OF PERSONNEL WE 1964 01:34:44,440 --> 01:34:46,560 HAVE THAT ARE QUITE SMALL AND A 1965 01:34:46,560 --> 01:34:47,280 NARROW FOCUS. 1966 01:34:47,280 --> 01:34:49,000 WE PUT OUR ENERGY INTO THESE 1967 01:34:49,000 --> 01:34:59,560 FOUR WHICH HAVE BEEN SUCCESSFUL. 1968 01:35:04,360 --> 01:35:05,480 WE DON'T HAVE A DIRECTOR PLAN 1969 01:35:05,480 --> 01:35:06,520 BUT WE'RE INTERESTED IN 1970 01:35:06,520 --> 01:35:07,160 EXPLORING OTHER DIRECTIONS FOR 1971 01:35:07,160 --> 01:35:10,320 THAT INITIATIVE. 1972 01:35:10,320 --> 01:35:12,240 >> GREAT WAY TO DO THIS, CHRIS. 1973 01:35:12,240 --> 01:35:13,560 THANKS. 1974 01:35:13,560 --> 01:35:23,800 >> THANK YOU. 1975 01:35:36,040 --> 01:35:36,600 >> THANK YOU. 1976 01:35:36,600 --> 01:35:36,880 CHRIS. 1977 01:35:36,880 --> 01:35:38,280 CHRIS WILL BE SPEAKING AGAIN 1978 01:35:38,280 --> 01:35:41,440 TOMORROW IN THE CLOSED SESSION. 1979 01:35:41,440 --> 01:35:43,280 SO YOU'LL HAVE ANOTHER CHANCE TO 1980 01:35:43,280 --> 01:35:45,480 ASK QUESTIONS OF HIM WHILE YOU 1981 01:35:45,480 --> 01:35:47,400 DIGEST THE INFORMATION THAT YOU 1982 01:35:47,400 --> 01:35:48,720 HEARD SO FAR. 1983 01:35:48,720 --> 01:35:51,080 THANK YOU VERY MUCH FOR THAT 1984 01:35:51,080 --> 01:35:54,480 VERY INFORMATIVE OVERVIEW. 1985 01:35:54,480 --> 01:35:59,640 AND NOW WE ARE GOING TO HEAR A 1986 01:35:59,640 --> 01:36:01,200 PRESENTATION FROM DR. CRISWELL 1987 01:36:01,200 --> 01:36:04,520 ONE OF THE COVID FIVE. 1988 01:36:04,520 --> 01:36:06,560 SO WE CALL THEM THE COVID FIVE 1989 01:36:06,560 --> 01:36:08,520 DIRECTORS BECAUSE OVER THE 1990 01:36:08,520 --> 01:36:12,840 PERIOD OF THE PANDEMIC, FIVE NEW 1991 01:36:12,840 --> 01:36:14,600 INSTITUTE DIRECTORS WERE 1992 01:36:14,600 --> 01:36:19,920 APPOINTED AND SO THEY FORM A 1993 01:36:19,920 --> 01:36:22,600 COHORT AMONGST THEMSELVES AND 1994 01:36:22,600 --> 01:36:24,280 THEY BRAVELY INITIATED THEIR NEW 1995 01:36:24,280 --> 01:36:25,880 ROLES WHILE THERE WERE SO MANY 1996 01:36:25,880 --> 01:36:27,920 THINGS GOING ON IN THE PANDEMIC. 1997 01:36:27,920 --> 01:36:31,320 BUT IT'S A GREAT PLEASURE TO 1998 01:36:31,320 --> 01:36:32,440 INTRODUCE MY COLLEAGUE, 1999 01:36:32,440 --> 01:36:34,040 DR. CRISWELL WHO WAS APPOINTED 2000 01:36:34,040 --> 01:36:35,240 AS THE DIRECTOR OF THE NATIONAL 2001 01:36:35,240 --> 01:36:39,080 INSTITUTE OF ARTHRITIS AND 2002 01:36:39,080 --> 01:36:40,360 MUSCULOSKELETAL AND SKIN DISEASE 2003 01:36:40,360 --> 01:36:46,960 KNOWN AS NIAMS IN FEBRUARY OF 2004 01:36:46,960 --> 01:36:48,160 2021. 2005 01:36:48,160 --> 01:36:49,440 SO PRIOR TO JOINING, 2006 01:36:49,440 --> 01:36:50,840 DR. CRISWELL WAS THE VICE 2007 01:36:50,840 --> 01:36:52,840 CHANCELLOR OF RESEARCH AT THE 2008 01:36:52,840 --> 01:36:54,000 UNIVERSITY OF CALIFORNIA SAN 2009 01:36:54,000 --> 01:36:54,280 FRANCISCO. 2010 01:36:54,280 --> 01:36:56,520 SHE'S A BOARD CERTIFIED 2011 01:36:56,520 --> 01:36:57,080 RHEUMATOLOGIST. 2012 01:36:57,080 --> 01:37:00,760 SHE WAS ALSO A PROFESSOR OF 2013 01:37:00,760 --> 01:37:02,000 RHEUMATOLOGY AND PROFESSOR OF 2014 01:37:02,000 --> 01:37:03,520 ORAL FACIAL SCIENCES AT UCSF. 2015 01:37:03,520 --> 01:37:08,720 SHE WAS AWARDED THE KENNETH H. 2016 01:37:08,720 --> 01:37:11,800 FREI ENDOWED CHAIR IN 2017 01:37:11,800 --> 01:37:14,200 RHEUMATOLOGY AND DISTINGUISHED 2018 01:37:14,200 --> 01:37:15,800 PROFESSORSHIP IN RHEUMATOLOGY. 2019 01:37:15,800 --> 01:37:17,520 HER OWN LABORATORY'S RESEARCH 2020 01:37:17,520 --> 01:37:19,200 INTERESTS ARE ON THE GENETICS 2021 01:37:19,200 --> 01:37:24,480 AND EPIDEMIOLOGY OF HUMAN 2022 01:37:24,480 --> 01:37:29,080 AUTOIMMUNE DISEASE PARTICULARLY 2023 01:37:29,080 --> 01:37:30,280 RHEUMATOID ARTHRITIS. 2024 01:37:30,280 --> 01:37:32,600 SHE'LL BE TELLING US ABOUT THE 2025 01:37:32,600 --> 01:37:33,440 MISSION TO SUPPORT RESEARCH IN 2026 01:37:33,440 --> 01:37:35,240 THE CAUSES, TREATMENT AND 2027 01:37:35,240 --> 01:37:38,520 PREVENTION OF ARTHRITIS IN 2028 01:37:38,520 --> 01:37:39,720 MUSCULOSKELETAL SKIN DISEASES 2029 01:37:39,720 --> 01:37:40,600 AND THE NEWEST STRATEGIC 2030 01:37:40,600 --> 01:37:43,040 PLANNING EFFORT SHE IS 2031 01:37:43,040 --> 01:37:43,520 LAUNCHING. 2032 01:37:43,520 --> 01:37:45,440 AND AS WE HAD ASKED OF THE OTHER 2033 01:37:45,440 --> 01:37:47,960 NEW DIRECTORS WHEN THEY COME TO 2034 01:37:47,960 --> 01:37:49,480 SPEAK WITH US, WE'RE 2035 01:37:49,480 --> 01:37:52,680 PARTICULARLY INTERESTED IN AREAS 2036 01:37:52,680 --> 01:37:56,160 IN WHICH OUR TWO INSTITUTES MAY 2037 01:37:56,160 --> 01:37:56,440 COLLABORATE. 2038 01:37:56,440 --> 01:38:01,280 DR. CRISWELL, OVER TO YOU. 2039 01:38:01,280 --> 01:38:01,480 >> 2040 01:38:01,480 --> 01:38:01,800 >> THANK YOU. 2041 01:38:01,800 --> 01:38:02,920 I APPRECIATE THE OPPORTUNITY TO 2042 01:38:02,920 --> 01:38:06,280 SPEAK WITH YOU AND TO MEET YOU 2043 01:38:06,280 --> 01:38:16,800 ALBEIT IN THIS VIRTUAL FORMAT. 2044 01:38:38,720 --> 01:38:40,160 THANK YOU FOR THE OPPORTUNITY. 2045 01:38:40,160 --> 01:38:42,000 IT'S A PLEASURE TO BE HERE AND 2046 01:38:42,000 --> 01:38:44,000 APPRECIATE THE OPPORTUNITY TO 2047 01:38:44,000 --> 01:38:45,240 SHARE HIGHLIGHTS OF THE 2048 01:38:45,240 --> 01:38:46,520 LONG-TERM COMMITMENT TO RESEARCH 2049 01:38:46,520 --> 01:38:51,840 AREAS WHERE THE MISSIONS OF 2050 01:38:51,840 --> 01:38:54,840 INSTITUTES INTERSECT. 2051 01:38:54,840 --> 01:38:56,200 THE TWO ENJOYED A PARTNERSHIP 2052 01:38:56,200 --> 01:38:59,040 AND LOOK FORWARD TO A ROBUST 2053 01:38:59,040 --> 01:38:59,360 DISCUSSION. 2054 01:38:59,360 --> 01:39:01,480 AS THE DIRECTOR I'M EXCITED TO 2055 01:39:01,480 --> 01:39:07,360 EVERY SEE THE WIDE RANGE 2056 01:39:07,360 --> 01:39:10,080 PORTFOLIO AND I HAVE BEEN 2057 01:39:10,080 --> 01:39:13,040 GETTING TO GET TO KNOW MY FELLOW 2058 01:39:13,040 --> 01:39:15,840 DIRECTORS AND EXPLORING WAYS TO 2059 01:39:15,840 --> 01:39:17,480 PARTNER IN MANY AREAS OF COMMON 2060 01:39:17,480 --> 01:39:17,760 INTERESTED. 2061 01:39:17,760 --> 01:39:19,960 I APPRECIATED DR. BIANCHI'S 2062 01:39:19,960 --> 01:39:22,320 SUPPORT AND ADVISE DURING MY 2063 01:39:22,320 --> 01:39:22,880 RECRUITMENT AND DURING THE 2064 01:39:22,880 --> 01:39:33,200 ONBOARDING PROCESS. 2065 01:39:35,040 --> 01:39:38,320 THE INSTITUTE WAS ESTABLISHED IN 2066 01:39:38,320 --> 01:39:40,240 1986 BUT WAS PART OF THE 2067 01:39:40,240 --> 01:39:42,400 NATIONAL INSTITUTE OF ARTHRITIS, 2068 01:39:42,400 --> 01:39:47,120 DIABETES AND DIGESTIVE AND 2069 01:39:47,120 --> 01:39:48,640 KIDNEY DISEASES NOW THE NATIONAL 2070 01:39:48,640 --> 01:39:50,920 INSTITUTE OF DIABETES AND 2071 01:39:50,920 --> 01:39:54,040 DIGESTIVE AND KIDNEY DISEASE. 2072 01:39:54,040 --> 01:39:57,440 AND LOOK INTO CAUSES, PREVENTION 2073 01:39:57,440 --> 01:40:00,320 TREATMENT OF ARTHRITIS AND 2074 01:40:00,320 --> 01:40:02,280 MUSCULOSKELETAL AND SKIN 2075 01:40:02,280 --> 01:40:03,480 DISEASES AND PROVIDE INFORMATION 2076 01:40:03,480 --> 01:40:06,000 TO THE PUBLIC OF OUR RESEARCH 2077 01:40:06,000 --> 01:40:07,320 PROGRESS IN MISSION AREAS AND 2078 01:40:07,320 --> 01:40:08,480 HOW IT CAN BE APPLIED TO IMPROVE 2079 01:40:08,480 --> 01:40:13,040 HEALTH. 2080 01:40:13,040 --> 01:40:16,480 IN FUND YEAR 2022 OUR MISSION 2081 01:40:16,480 --> 01:40:22,520 WAS CARRIED OUT BY $656 MILLION 2082 01:40:22,520 --> 01:40:23,720 AND NIAMS SUPPORTS THE 2083 01:40:23,720 --> 01:40:25,520 INTRAMURAL RESEARCH PROGRAM AND 2084 01:40:25,520 --> 01:40:30,080 OUR FEDERAL LABORATORIES AND 2085 01:40:30,080 --> 01:40:31,640 EXTRAMURAL RESEARCH BY 2086 01:40:31,640 --> 01:40:33,520 UNIVERSITIES AND INSTITUTIONS 2087 01:40:33,520 --> 01:40:37,440 ACROSS THE COUNTRY. 2088 01:40:37,440 --> 01:40:40,240 THIS SHOWS OUR FUNDING AMONG THE 2089 01:40:40,240 --> 01:40:45,800 INTRAMURAL, EXTRAMURAL AND OTHER 2090 01:40:45,800 --> 01:40:47,760 COMPONENTS OF THE NIH AS WELL AS 2091 01:40:47,760 --> 01:40:47,960 NIAMS. 2092 01:40:47,960 --> 01:40:51,040 NIAMS INVESTS MOST MONEY AT 2093 01:40:51,040 --> 01:40:56,400 INSTITUTIONS AROUND THE COUNTRY 2094 01:40:56,400 --> 01:41:00,040 AND SPEND ON THE PROGRAM HERE IN 2095 01:41:00,040 --> 01:41:01,480 BETHESDA. 2096 01:41:01,480 --> 01:41:07,160 WITH INPUT FROM THE NIAMS 2097 01:41:07,160 --> 01:41:09,440 ADVISORY COUNCIL AND DEVELOPED 2098 01:41:09,440 --> 01:41:13,560 THE PLAN COVERING FISCAL YEARS 2099 01:41:13,560 --> 01:41:17,040 20 TO 24 TO IMPROVE HEALTH 2100 01:41:17,040 --> 01:41:21,600 OUTCOMES IN THE FIVE CORE AREAS 2101 01:41:21,600 --> 01:41:22,600 OF THE NIAMS MISSION LISTED ON 2102 01:41:22,600 --> 01:41:25,520 THE SLIDE AND INCLUDE THE 2103 01:41:25,520 --> 01:41:29,480 SYSTEMIC AND RHEUMATIC DISEASES 2104 01:41:29,480 --> 01:41:32,040 AND BONE BIOLOGY AND DISEASES 2105 01:41:32,040 --> 01:41:36,320 AND MUSCLE BIOLOGY AND DISEASES 2106 01:41:36,320 --> 01:41:39,280 AND JOINT BIOLOGY AND DISEASES 2107 01:41:39,280 --> 01:41:40,040 AND PEDIATRICS RESEARCH. 2108 01:41:40,040 --> 01:41:43,960 THERE'S DISEASES AFFECTING 2109 01:41:43,960 --> 01:41:45,040 PEDIATRIC POPULATIONS ACROSS THE 2110 01:41:45,040 --> 01:41:48,040 NIAMS MISSION AREAS. 2111 01:41:48,040 --> 01:41:50,920 ARTHRITIS AND MUSCULOSKELETAL 2112 01:41:50,920 --> 01:41:55,600 AND SKIN DISEASES AFFECT ALL 2113 01:41:55,600 --> 01:41:57,480 POPULATIONS AND CAUSE TREMENDOUS 2114 01:41:57,480 --> 01:41:59,960 HUMAN SUFFERING AND AFFECT THE 2115 01:41:59,960 --> 01:42:02,680 U.S. ECONOMY DUE TO HEALTH CARE 2116 01:42:02,680 --> 01:42:04,520 COST AND LOSS PRODUCTIVITY. 2117 01:42:04,520 --> 01:42:08,120 MANY WHETHER COMMON OR RARE ALSO 2118 01:42:08,120 --> 01:42:10,560 AFFECT WOMEN DISPROPORTIONATELY 2119 01:42:10,560 --> 01:42:13,240 AND SOME WITH INCREASED DISEASE 2120 01:42:13,240 --> 01:42:16,280 SEVERITY DURING PREGNANCY. 2121 01:42:16,280 --> 01:42:19,480 THE CURRENT NIAMS STRATEGIC PLAN 2122 01:42:19,480 --> 01:42:20,360 ALSO HIGHLIGHTS SEVERAL 2123 01:42:20,360 --> 01:42:21,440 SCIENTIFIC THEMES THAT COVER 2124 01:42:21,440 --> 01:42:23,560 ACROSS OUR MISSION AREAS. 2125 01:42:23,560 --> 01:42:25,520 THESE INCLUDE USING NEW 2126 01:42:25,520 --> 01:42:27,200 TECHNOLOGIES TO IDENTIFY SHARED 2127 01:42:27,200 --> 01:42:30,680 MECHANISMS IN HEALTH AND AMONG 2128 01:42:30,680 --> 01:42:32,120 DISEASES, ADVANCING 2129 01:42:32,120 --> 01:42:33,840 PATIENT-CENTERED APPROACHES, 2130 01:42:33,840 --> 01:42:35,840 ENABLING PRECISION MEDICINE TO 2131 01:42:35,840 --> 01:42:37,880 TAILOR CARE FOR EACH PATIENT, 2132 01:42:37,880 --> 01:42:39,880 AND ADDRESSING THE HEALTH NEEDS 2133 01:42:39,880 --> 01:42:41,480 OF DIVERSE POPULATIONS. 2134 01:42:41,480 --> 01:42:44,600 THESE TOPICS EMERGE FROM NIAMS 2135 01:42:44,600 --> 01:42:45,840 LISTENING SESSIONS WITH THOUGHT 2136 01:42:45,840 --> 01:42:47,720 LEADERS IN EACH OF OUR DISEASE 2137 01:42:47,720 --> 01:42:48,720 AND TISSUE SPECIFIC MISSION 2138 01:42:48,720 --> 01:42:58,840 AREAS. 2139 01:43:00,000 --> 01:43:02,280 AS A FIRST STEP WE PUBLISHED A 2140 01:43:02,280 --> 01:43:03,800 REQUEST FOR INFORMATION TO 2141 01:43:03,800 --> 01:43:06,280 SOLICIT PUBLIC INPUT ON OLD 2142 01:43:06,280 --> 01:43:08,680 ASPIRATIONS AS WELL AS 2143 01:43:08,680 --> 01:43:09,160 CROSS-CUTTING RESEARCH 2144 01:43:09,160 --> 01:43:10,280 OPPORTUNITIES MANY OF WHICH 2145 01:43:10,280 --> 01:43:11,120 RELATE TO SCIENTIFIC AREAS THAT 2146 01:43:11,120 --> 01:43:17,480 ARE ALSO OF INTEREST TO THE 2147 01:43:17,480 --> 01:43:24,520 NICHD I'D LIKE TO INVITE ALL TO 2148 01:43:24,520 --> 01:43:26,240 PARTICIPATE AND INVITE FOR INPUT 2149 01:43:26,240 --> 01:43:30,360 AS WE PUT FORWARD OUR NEXT STUCK 2150 01:43:30,360 --> 01:43:30,840 PLAN. 2151 01:43:30,840 --> 01:43:32,680 BEYOND OUR STRONG PLANNING 2152 01:43:32,680 --> 01:43:36,280 EFFORT COMMUNITY ENGAGEMENT AND 2153 01:43:36,280 --> 01:43:40,080 PATIENT VOICE HAS BEEN CRITICAL. 2154 01:43:40,080 --> 01:43:43,960 AND ACTS WITH AN INDEPENDENT 2155 01:43:43,960 --> 01:43:46,920 CONSORTIUM OF PROFESSIONAL AND 2156 01:43:46,920 --> 01:43:47,560 VOLUNTARY ORGANIZATIONS SHARING 2157 01:43:47,560 --> 01:43:49,160 INTEREST IN THE NIAMS MISSION 2158 01:43:49,160 --> 01:43:49,480 AREAS. 2159 01:43:49,480 --> 01:43:51,960 NIAMS IS EAGER TO LEVERAGE THIS 2160 01:43:51,960 --> 01:43:55,520 PARTNERSHIP TO ADVANCE PEDIATRIC 2161 01:43:55,520 --> 01:43:56,680 RESEARCH IN OUR PORTFOLIO AND 2162 01:43:56,680 --> 01:44:00,280 SAY LONG-TERM SUPPORTER OF THE 2163 01:44:00,280 --> 01:44:02,960 PEDIATRIC DERMATOLOGY RESEARCH 2164 01:44:02,960 --> 01:44:04,280 ALLIANCE AND IT'S ANNUAL MEETING 2165 01:44:04,280 --> 01:44:05,880 THROUGH THE CONFERENCE GRANT 2166 01:44:05,880 --> 01:44:16,320 WITH THE R13 MECHANISM. 2167 01:44:20,000 --> 01:44:23,080 PREVIOUSLY, NIAMS SUPPORTED THE 2168 01:44:23,080 --> 01:44:25,000 ARTHROSCLEROSIS STUDY KNOWN AS 2169 01:44:25,000 --> 01:44:27,000 APPLE WHICH WAS A COLLABORATIVE 2170 01:44:27,000 --> 01:44:31,600 EFFORT WITH THE CHILD ARTHRITIS 2171 01:44:31,600 --> 01:44:33,480 AND RESEARCH A. 2172 01:44:33,480 --> 01:44:35,440 LUPUS IN PEDIATRIC POPULATIONS 2173 01:44:35,440 --> 01:44:40,280 IS GENERALLY MORE SEVERE THAN IN 2174 01:44:40,280 --> 01:44:50,920 ADULTS WITH COMORBIDITIES AND 2175 01:44:57,040 --> 01:44:59,680 THEY LOOKED AT TREATMENT TO SLOW 2176 01:44:59,680 --> 01:45:01,640 PROGRESSION OF ATHEROSCLEROSIS 2177 01:45:01,640 --> 01:45:03,120 IN CHILDREN WITH LUPUS. 2178 01:45:03,120 --> 01:45:06,360 WHILE THE RESULTS DO NOT 2179 01:45:06,360 --> 01:45:07,520 DEMONSTRATE COMPELLING EVIDENCE 2180 01:45:07,520 --> 01:45:10,600 FOR TREATMENT WITH STATINS FOR 2181 01:45:10,600 --> 01:45:13,160 THE PREVENTION OF 2182 01:45:13,160 --> 01:45:16,040 ATHEROSCLEROSIS THERE MAY BE 2183 01:45:16,040 --> 01:45:17,920 BENEFITS TO PATIENT SUB GROUPS 2184 01:45:17,920 --> 01:45:20,960 WITH SEVERE DISEASE AND SUCH 2185 01:45:20,960 --> 01:45:21,400 STUDIES ARE ONGOING. 2186 01:45:21,400 --> 01:45:24,240 WITHIN THE NIH, IN ORDER TO 2187 01:45:24,240 --> 01:45:25,800 LEVERAGE OPPORTUNITIES FOR 2188 01:45:25,800 --> 01:45:27,600 PARTNERSHIP AND EVIDENCE OF 2189 01:45:27,600 --> 01:45:28,520 NIAMS COMMITMENT TO PEDIATRIC 2190 01:45:28,520 --> 01:45:29,960 RESEARCH THE INSTITUTE IS AN 2191 01:45:29,960 --> 01:45:37,000 ACTIVE MEMBER OF THE NIH 2192 01:45:37,000 --> 01:45:38,800 PEDIATRIC CONSORTIUM LED BY 2193 01:45:38,800 --> 01:45:39,000 NICHD. 2194 01:45:39,000 --> 01:45:39,640 BEFORE DISCUSSING CURRENT 2195 01:45:39,640 --> 01:45:43,240 ACTIVITIES I'D LIKE TO NOTE THE 2196 01:45:43,240 --> 01:45:45,120 SUCCESSFUL PAST COLLABORATION. 2197 01:45:45,120 --> 01:45:47,840 IN 2012, NIAMS PARTICIPATED IN 2198 01:45:47,840 --> 01:45:50,480 THE LAUNCH OF THE TRANS-NIH 2199 01:45:50,480 --> 01:45:51,960 ENVIRONMENTAL INFLUENCES ON 2200 01:45:51,960 --> 01:45:54,280 CHILD HEALTH OUTCOMES ALONG WITH 2201 01:45:54,280 --> 01:45:56,280 NICHD AND OTHER I.C.s. 2202 01:45:56,280 --> 01:45:58,720 THIS PART OF ECHO, NIAMS OVERSAW 2203 01:45:58,720 --> 01:46:02,920 THE VALIDATION OF PEDIATRIC 2204 01:46:02,920 --> 01:46:04,080 PATIENT-REPORTED OUTCOMES IN 2205 01:46:04,080 --> 01:46:05,440 CHRONIC DISEASE CONSORTIUM 2206 01:46:05,440 --> 01:46:08,160 COMMONLY REFERRED TO AS PEPPER 2207 01:46:08,160 --> 01:46:09,840 ON BEHALF OF THE NIH. 2208 01:46:09,840 --> 01:46:11,440 THE GOAL OF THE PEPPER 2209 01:46:11,440 --> 01:46:12,800 CONSORTIUM WAS TO TEST SEVERAL 2210 01:46:12,800 --> 01:46:14,440 PEDIATRIC PATIENT-REPORTED 2211 01:46:14,440 --> 01:46:17,320 OUTCOME TOOLS THAT MEASURE 2212 01:46:17,320 --> 01:46:19,640 ASPECTS OF PHYSICAL, MENTAL AND 2213 01:46:19,640 --> 01:46:22,360 SOCIAL WELL BEING SUCH AS PAIN, 2214 01:46:22,360 --> 01:46:24,600 ANXIETY AND PEER RELATIONSHIPS. 2215 01:46:24,600 --> 01:46:26,080 IT USED PEDIATRIC SELF-REPORT 2216 01:46:26,080 --> 01:46:29,440 AND PARENT PROXY INSTRUMENTS 2217 01:46:29,440 --> 01:46:32,160 INVOLVED THROUGH THE NIH COMMON 2218 01:46:32,160 --> 01:46:35,000 FUND'S PROMISE OF 2219 01:46:35,000 --> 01:46:38,920 PATIENT-REPORTED OUTCOMES AND 2220 01:46:38,920 --> 01:46:41,480 SYSTEM INITIATIVE. 2221 01:46:41,480 --> 01:46:43,280 THE CONSORTIUM FACILITATED THEIR 2222 01:46:43,280 --> 01:46:45,480 ADOPTION AND MEANINGFUL USE IN 2223 01:46:45,480 --> 01:46:48,560 CLINICAL CARE SETTINGS. 2224 01:46:48,560 --> 01:46:50,640 NEXT, I WANT TO COVER CURRENT 2225 01:46:50,640 --> 01:46:52,240 EXAMPLES OF PEDIATRIC RESEARCH 2226 01:46:52,240 --> 01:46:53,800 AT NIAMS STARTING WITH OUR 2227 01:46:53,800 --> 01:46:54,400 INTRAMURAL RESEARCH PROGRAM 2228 01:46:54,400 --> 01:46:57,480 WHICH HAS A STRONG FOCUS ON 2229 01:46:57,480 --> 01:46:58,680 PEDIATRIC DISEASE RESEARCH 2230 01:46:58,680 --> 01:46:59,240 PARTICULARLY FOR RHEUMATIC 2231 01:46:59,240 --> 01:47:01,480 DISEASES. 2232 01:47:01,480 --> 01:47:03,480 OUR CLINICAL DIRECTOR, 2233 01:47:03,480 --> 01:47:08,360 DR. ROBERT CULVERT IS A 2234 01:47:08,360 --> 01:47:10,880 PEDIATRIC RHEUMATOLOGIST AND HIS 2235 01:47:10,880 --> 01:47:12,280 RESEARCH FOCUSES ON 2236 01:47:12,280 --> 01:47:17,520 UNDERSTANDING THE ETIOLOGY AND 2237 01:47:17,520 --> 01:47:21,480 PATHOGENESIS OF EARLY ONSET OF 2238 01:47:21,480 --> 01:47:26,480 JUVENILE SPONDAL ARTHRITIS AND 2239 01:47:26,480 --> 01:47:29,480 DR. KIM FOCUSES ON EXPLORING THE 2240 01:47:29,480 --> 01:47:33,520 PATHOGENESIS AND INVOLVE 2241 01:47:33,520 --> 01:47:38,840 TREATMENTS IN A CHRONIC 2242 01:47:38,840 --> 01:47:39,760 AUTOIMMUNE INFLAMMATORY DISEASE 2243 01:47:39,760 --> 01:47:42,280 RESULTING IN MUSCLE WEAKNESS AND 2244 01:47:42,280 --> 01:47:43,280 SKIN RASHES WITH THE POTENTIAL 2245 01:47:43,280 --> 01:47:48,280 FOR INVOLVEMENT OF OTHER ORGANS. 2246 01:47:48,280 --> 01:47:50,920 DR. OMBRELLO CERTIFIED IN ADULT 2247 01:47:50,920 --> 01:47:54,080 AND PEDIATRIC RHEUMATOLOGY LEADS 2248 01:47:54,080 --> 01:47:55,920 OUR TRANSLATIONAL GENETICS AND 2249 01:47:55,920 --> 01:47:56,880 GENOMIC UNIT. 2250 01:47:56,880 --> 01:48:01,240 HE FOCUSES ON UNDERSTANDING THE 2251 01:48:01,240 --> 01:48:03,240 MECHANISM UNDER LIE INFLAMMATORY 2252 01:48:03,240 --> 01:48:05,880 AUTOIMMUNE DISEASE WITH COMPLEX 2253 01:48:05,880 --> 01:48:09,480 DISEASES SUCH AS STIHL'S DISEASE 2254 01:48:09,480 --> 01:48:12,440 AND OTHERS. 2255 01:48:12,440 --> 01:48:17,480 THE LUPUS GENOMICS AND GLOBAL 2256 01:48:17,480 --> 01:48:21,480 HEALTH DISPARITIES UNIT LED BY 2257 01:48:21,480 --> 01:48:23,920 DR. LEWANDOWSKI INCLUDES DIVERSE 2258 01:48:23,920 --> 01:48:25,000 POPULATIONS OF LUPUS PATIENTS 2259 01:48:25,000 --> 01:48:27,520 AND THEIR STUDIES OF GENETIC 2260 01:48:27,520 --> 01:48:29,400 CHANGES THAT OCCUR IN EARLY 2261 01:48:29,400 --> 01:48:29,760 ONSET LUPUS. 2262 01:48:29,760 --> 01:48:37,800 AND WE ALSO RECENTLY RECRUIT A 2263 01:48:37,800 --> 01:48:41,480 PEDIATRIC DERMATOLOGIST TO JOIN 2264 01:48:41,480 --> 01:48:47,080 OUR CUTANEOUS MICROBIOME 2265 01:48:47,080 --> 01:48:48,080 SECTION. 2266 01:48:48,080 --> 01:48:56,000 IT KOVRZ OF COVERS 2267 01:48:57,880 --> 01:49:00,800 >> COVERS LOOKING AT DERMATITIS 2268 01:49:00,800 --> 01:49:02,920 AND OTHERS. 2269 01:49:02,920 --> 01:49:04,400 AND OTHER INVESTIGATORS ALSO 2270 01:49:04,400 --> 01:49:05,440 COLLABORATE WITH THEIR 2271 01:49:05,440 --> 01:49:07,120 INTRAMURAL COLLEAGUES. 2272 01:49:07,120 --> 01:49:11,840 ONE EXAMPLE IS A STUDY OF A RARE 2273 01:49:11,840 --> 01:49:13,480 PROGRESSIVE DISEASE THAT AFFECTS 2274 01:49:13,480 --> 01:49:16,040 THE GROWTH AND DEVELOPMENT OF 2275 01:49:16,040 --> 01:49:24,320 BONES AND SOFT TISSUE. 2276 01:49:24,320 --> 01:49:33,600 THE NIAMS CLINICAL UNIT AND 2277 01:49:33,600 --> 01:49:35,240 COLLEAGUES WORKED WITH 15 2278 01:49:35,240 --> 01:49:37,240 PATIENTS FROM AROUND THE WORLD 2279 01:49:37,240 --> 01:49:39,000 WHO TRAVELED TO THE NIH CLINICAL 2280 01:49:39,000 --> 01:49:47,760 CENTER TO UNDER GO BIOPSIES OF 2281 01:49:47,760 --> 01:49:51,680 AFACT AND UNAFFECTED BONES AND 2282 01:49:51,680 --> 01:49:54,840 MANY HAD MAP2K1 A GENE CRITICAL 2283 01:49:54,840 --> 01:49:57,200 FOR SKELETAL DEVELOPMENT. 2284 01:49:57,200 --> 01:49:59,440 THE MUTATION COVERED BONE CELLS 2285 01:49:59,440 --> 01:50:01,480 TO DISPLAY INCREASED GROWTH AND 2286 01:50:01,480 --> 01:50:02,800 HARDENING IN THE AFFECTED BONES. 2287 01:50:02,800 --> 01:50:05,120 IN ADDITION TO PROVIDING NEW 2288 01:50:05,120 --> 01:50:07,080 INSIGHT INTO THIS CONDITION, 2289 01:50:07,080 --> 01:50:09,360 THEY'RE FINDING IMPLICATIONS FOR 2290 01:50:09,360 --> 01:50:13,240 OTHER DISEASES THAT IMPACT 2291 01:50:13,240 --> 01:50:14,040 BROADER POPULATIONS SUCH AS THE 2292 01:50:14,040 --> 01:50:19,120 AFFECTS OF AGING ON BONE. 2293 01:50:19,120 --> 01:50:21,400 NEXT, I'LL PROVIDE UPDATES OF 2294 01:50:21,400 --> 01:50:22,600 EXTRAMURAL RESEARCH ACROSS THE 2295 01:50:22,600 --> 01:50:25,040 MISSION AREAS RELATED TO HUMAN 2296 01:50:25,040 --> 01:50:26,320 DEVELOPMENT AND CHILD HEALTH 2297 01:50:26,320 --> 01:50:27,720 STARTING WITH AN EXAMPLE FROM 2298 01:50:27,720 --> 01:50:29,320 OUR SYSTEMIC RHEUMATIC DISEASES 2299 01:50:29,320 --> 01:50:32,680 PORTFOLIO. 2300 01:50:32,680 --> 01:50:36,760 AS YOU MAY KNOW AN ESTIMATED 90% 2301 01:50:36,760 --> 01:50:39,440 OF PEOPLE DIAGNOSED WITH LUPUS 2302 01:50:39,440 --> 01:50:42,640 IS WOMEN AND MORE PREVALENT IN 2303 01:50:42,640 --> 01:50:44,520 AFRICAN AMERICAN AND HISPANICS 2304 01:50:44,520 --> 01:50:45,400 AND ASIANS THAN WHITES. 2305 01:50:45,400 --> 01:50:47,200 WOMEN HAVE BEEN COUNSELLED TO 2306 01:50:47,200 --> 01:50:51,400 AVOID WITH PREGNANCY AS 2307 01:50:51,400 --> 01:50:52,280 PREGNANCY THROMBOSIS IS FAIRLY 2308 01:50:52,280 --> 01:50:56,040 COMMON IN THESE PATIENTS 2309 01:50:56,040 --> 01:50:58,040 PARTICULARLY THOSE WHO HAVE 2310 01:50:58,040 --> 01:50:58,640 CERTAIN ANTIBODIES. 2311 01:50:58,640 --> 01:50:59,920 NIAMS SUPPORTED THE PROMISE 2312 01:50:59,920 --> 01:51:01,120 STUDY WHICH STANDS FOR 2313 01:51:01,120 --> 01:51:04,600 PREDICTORS OF PREGNANCY 2314 01:51:04,600 --> 01:51:06,560 OUTCOMES, BIOMARKERS IN ANTIFOSO 2315 01:51:06,560 --> 01:51:17,120 LIPID ANTIBIOTIC SYSTEM LED BY 2316 01:51:17,440 --> 01:51:19,040 THE HOSPITAL BY SPECIAL SURGERY 2317 01:51:19,040 --> 01:51:24,280 AND THERE WERE OVER 700 PATIENTS 2318 01:51:24,280 --> 01:51:29,240 WITH LUPUS OR THE PHOSSO LIPID 2319 01:51:29,240 --> 01:51:29,680 ANTIBIOTIC SYSTEMS. 2320 01:51:29,680 --> 01:51:33,320 AND PAPERS PUBLISHED WITH NYU 2321 01:51:33,320 --> 01:51:34,920 DEMONSTRATED MOST WOMEN WHO HAVE 2322 01:51:34,920 --> 01:51:36,840 LUPUS CAN EXPECT A GOOD 2323 01:51:36,840 --> 01:51:38,560 PREGNANCY OUTCOME IF THEIR 2324 01:51:38,560 --> 01:51:41,160 DISEASE IS INACTIVE. 2325 01:51:41,160 --> 01:51:45,480 BUT INVESTIGATORS ALSO IDENTIFY 2326 01:51:45,480 --> 01:51:50,560 MOLECULE IN SOME WOMEN'S BLOOD 2327 01:51:50,560 --> 01:51:54,160 THAT INDICATE THE POSSIBILITY 2328 01:51:54,160 --> 01:51:57,440 FOR MORE SERIOUS COMPLICATIONS. 2329 01:51:57,440 --> 01:52:01,080 THOSE AT RISK OF MISCHARGE OR 2330 01:52:01,080 --> 01:52:04,200 OTHER SERIOUS COMPLICATIONS WILL 2331 01:52:04,200 --> 01:52:05,800 ALLOW TO TAILOR ASSESSMENT AND 2332 01:52:05,800 --> 01:52:06,440 COUNSELLING AND TREATMENT FOR 2333 01:52:06,440 --> 01:52:16,760 WOMEN WITH LUPUS. 2334 01:52:20,000 --> 01:52:27,640 AND THERE'S AND LOOK AT 2335 01:52:27,640 --> 01:52:29,480 PREVENTIBLE MATERNAL MORTALITY 2336 01:52:29,480 --> 01:52:30,920 AND DECREASE MATERNAL MORBIDITY 2337 01:52:30,920 --> 01:52:32,280 AND PROMOTE MATERNAL HEALTH 2338 01:52:32,280 --> 01:52:32,480 EQUITY. 2339 01:52:32,480 --> 01:52:35,480 WE LOOK FORWARD TO PARTNERING 2340 01:52:35,480 --> 01:52:36,400 WITH NICHD ON THE IMPORTANT AND 2341 01:52:36,400 --> 01:52:40,960 TIMELY EFFORT. 2342 01:52:40,960 --> 01:52:44,360 THE MUSCULAR DYSTROPHIES ARE 2343 01:52:44,360 --> 01:52:45,320 ANOTHER AREA OF SHARED INTEREST 2344 01:52:45,320 --> 01:52:48,240 OF NIAMS AND NICHD. 2345 01:52:48,240 --> 01:52:51,960 BOTH INSTITUTES ARE CHARTER 2346 01:52:51,960 --> 01:52:53,120 MEMBERS OF THE COORDINATING 2347 01:52:53,120 --> 01:52:54,960 COMMITTEE. 2348 01:52:54,960 --> 01:52:59,560 A FLAGSHIP OF THE NIH RESEARCH 2349 01:52:59,560 --> 01:53:02,040 PORTFOLIO IS FROM THE 2350 01:53:02,040 --> 01:53:03,360 MUSCULODYSTROPHY RESEARCH 2351 01:53:03,360 --> 01:53:06,720 CENTERS A COLLABORATION AMONG 2352 01:53:06,720 --> 01:53:09,280 NIAMS, NICHD AND NINDS AND 2353 01:53:09,280 --> 01:53:09,480 NHLBI. 2354 01:53:09,480 --> 01:53:12,560 THE GOAL OF THE PROGRAM IS TO 2355 01:53:12,560 --> 01:53:14,720 HAVE SIX ACTIVE CENTERS AT ANY 2356 01:53:14,720 --> 01:53:18,560 ONE TIME WITH NIAMS, NICHD AND 2357 01:53:18,560 --> 01:53:22,600 SUPPORTING TWO CENTERS EACH AND 2358 01:53:22,600 --> 01:53:26,560 NHLBI SUPPORTING CENTERS THAT 2359 01:53:26,560 --> 01:53:30,840 RELATE TO CARDIAC OR PULMONARY 2360 01:53:30,840 --> 01:53:31,360 CENTERS. 2361 01:53:31,360 --> 01:53:33,360 ONE IS AT THE UNIVERSITY OF 2362 01:53:33,360 --> 01:53:36,000 FLORIDA WHERE INVESTIGATORS 2363 01:53:36,000 --> 01:53:38,040 FOCUS ON THE ROLES OF 2364 01:53:38,040 --> 01:53:40,520 INFLAMMATION AND FIBROSIS AND 2365 01:53:40,520 --> 01:53:45,360 FAT IN MUSCULODYSTROPHY AND THE 2366 01:53:45,360 --> 01:53:46,720 CANCER RESEARCH CENTER WHERE 2367 01:53:46,720 --> 01:53:48,440 INVESTIGATORS ARE CONDUCTING 2368 01:53:48,440 --> 01:53:54,360 CLINIC STUDIES ON DUCHENNE'S 2369 01:53:54,360 --> 01:53:55,800 MUSCULAR DYSTROPHY AND OTHERS. 2370 01:53:55,800 --> 01:53:58,800 AND THE TWO SUPPORTED BY THE 2371 01:53:58,800 --> 01:54:00,200 NICHD ARE AT THE UNIVERSITY OF 2372 01:54:00,200 --> 01:54:01,000 MASSACHUSETTS MEDICAL SCHOOL 2373 01:54:01,000 --> 01:54:02,440 WHERE INVESTIGATORS ARE 2374 01:54:02,440 --> 01:54:04,000 FOCUSSING ON MOLECULAR GENETIC 2375 01:54:04,000 --> 01:54:10,440 AND EPIGENETIC PATHOLOGIES AND 2376 01:54:10,440 --> 01:54:15,120 THE U.T. SOUTHWESTERN WHERE 2377 01:54:15,120 --> 01:54:19,120 THEY'RE EXPLORING DUCHENNE'S 2378 01:54:19,120 --> 01:54:19,520 MUSCULODYSTROPHY. 2379 01:54:19,520 --> 01:54:23,120 IN 2019 THE CENTER EVALUATION 2380 01:54:23,120 --> 01:54:25,400 WORKING GROUP WITH INTEGRAL 2381 01:54:25,400 --> 01:54:26,960 CONTRIBUTION FROM STAFF 2382 01:54:26,960 --> 01:54:29,200 INCLUDING DR. GLAVINE COMPLETED 2383 01:54:29,200 --> 01:54:31,240 ITS EVALUATION OF THE PROGRAM 2384 01:54:31,240 --> 01:54:32,280 AND PROVIDED VALUABLE 2385 01:54:32,280 --> 01:54:33,560 RECOMMENDATIONS TO HELP INFORM 2386 01:54:33,560 --> 01:54:35,440 HOW THE PROGRAM MIGHT BE 2387 01:54:35,440 --> 01:54:37,440 ADJUSTED TO FURTHER ADVANCE 2388 01:54:37,440 --> 01:54:42,720 MUSCULODYSTROPHY RESEARCH. 2389 01:54:42,720 --> 01:54:44,720 THE BRITTLE BONE DISORDER 2390 01:54:44,720 --> 01:54:46,720 CONSORTIUM ESTABLISHED IN 2014, 2391 01:54:46,720 --> 01:54:48,880 FOCUSES ON RARE BONE DISEASE AND 2392 01:54:48,880 --> 01:54:58,360 IS CO-FUNDED BY NIAMS, NCATS AND 2393 01:54:58,360 --> 01:55:02,440 NIDCR AND FOCUSES ON OSTEOGEN IS 2394 01:55:02,440 --> 01:55:04,920 IMPERFECTA WHERE BONES FRACTURE 2395 01:55:04,920 --> 01:55:06,920 EASILY AND WITH NO OBVIOUS CAUSE 2396 01:55:06,920 --> 01:55:08,280 OR INJURY. 2397 01:55:08,280 --> 01:55:10,360 THE CONSORTIUM HAS THREE PRIMARY 2398 01:55:10,360 --> 01:55:12,720 GOALS, TO GAIN A BETTER 2399 01:55:12,720 --> 01:55:17,920 UNDERSTANDING OF ALL GENETIC 2400 01:55:17,920 --> 01:55:20,080 FORMS OF OI AND EXPAND TREATMENT 2401 01:55:20,080 --> 01:55:21,000 OPTIONS AN IMPLEMENT TRAINING 2402 01:55:21,000 --> 01:55:22,400 PROGRAMS FOR THE NEXT GENERATION 2403 01:55:22,400 --> 01:55:24,040 OF PHYSICIANS AND SCIENTISTS IN 2404 01:55:24,040 --> 01:55:24,680 THE AREA OF GENETIC BONE 2405 01:55:24,680 --> 01:55:31,040 DISEASE. 2406 01:55:31,040 --> 01:55:36,360 ANOTHER PROJECT IS IMPACT. 2407 01:55:36,360 --> 01:55:45,400 OR INFRASTRUCTURE FOR MUSS -- 2408 01:55:45,880 --> 01:55:52,040 THERE'S TWO FRACTURES, NEF AND 2409 01:55:52,040 --> 01:55:54,800 DRF IS CONTROVERSIAL AND VARIES 2410 01:55:54,800 --> 01:55:57,000 AMONG HEALTH CARE PROVIDERS. 2411 01:55:57,000 --> 01:56:01,280 IMPACT SEEKS TO DEVELOP THE 2412 01:56:01,280 --> 01:56:04,000 INFRASTRUCTURE AND EXPERIENCE 2413 01:56:04,000 --> 01:56:08,560 NECESSARY FOR MULTI-CENTER 2414 01:56:08,560 --> 01:56:10,800 RANDOMIZED CONTROL TRIALS. 2415 01:56:10,800 --> 01:56:13,760 AND THOSE WHO WANT THEIR BROKEN 2416 01:56:13,760 --> 01:56:17,240 BONE MOVED BACK TO ITS ORIGINAL 2417 01:56:17,240 --> 01:56:20,360 PLACE UNDER GENERAL ANESTHESIA 2418 01:56:20,360 --> 01:56:24,360 OR CONSCIOUS SEDATION WILL HAVE 2419 01:56:24,360 --> 01:56:26,760 HIGHER REPORTED OUTCOME SCORES 2420 01:56:26,760 --> 01:56:29,400 COMPARED TO THOSE WITH SIMPLE 2421 01:56:29,400 --> 01:56:33,360 IMMOBILIZATION ALONE AND BELIEVE 2422 01:56:33,360 --> 01:56:36,000 IT WILL PROVIDE FRAMEWORK AND 2423 01:56:36,000 --> 01:56:37,080 EXPERIENCE FOR MULTI-CENTER 2424 01:56:37,080 --> 01:56:40,560 CLINICAL TRIALS IN PEDIATRIC 2425 01:56:40,560 --> 01:56:41,360 OTHER PEDIATRICS AND WILL GUIDE 2426 01:56:41,360 --> 01:56:42,200 CLINIC DECISION MAKING FOR THE 2427 01:56:42,200 --> 01:56:48,800 DECISIONS. 2428 01:56:48,800 --> 01:56:49,840 LASTLY, I'D LIKE TO HIGHLIGHT 2429 01:56:49,840 --> 01:56:51,640 ONE ADDITIONAL AREA OF SHARED 2430 01:56:51,640 --> 01:56:51,880 INTEREST. 2431 01:56:51,880 --> 01:56:53,480 AS YOU KNOW, NICHD IS HOME TO 2432 01:56:53,480 --> 01:56:58,160 THE NATIONAL CENTER FOR MEDICAL 2433 01:56:58,160 --> 01:56:58,680 REHABILITATION RESEARCH. 2434 01:56:58,680 --> 01:57:00,280 AND THIS CONSISTS OF PREVENTION 2435 01:57:00,280 --> 01:57:02,720 AND TREATMENT STRATEGIES FOR 2436 01:57:02,720 --> 01:57:04,280 MITIGATING SYMPTOMS ASSOCIATED 2437 01:57:04,280 --> 01:57:05,920 WITH MULTIPLE CHRONIC CONDITIONS 2438 01:57:05,920 --> 01:57:09,240 IN INDIVIDUALS WITH PHYSICAL 2439 01:57:09,240 --> 01:57:09,880 IMPAIRMENTS INCLUDING PERSISTENT 2440 01:57:09,880 --> 01:57:17,320 PAIN. 2441 01:57:17,320 --> 01:57:19,240 AND THERE'S OPPORTUNITIES FOR 2442 01:57:19,240 --> 01:57:20,320 ENHANCED COLLABORATIONS. 2443 01:57:20,320 --> 01:57:23,920 NIAMS IS LEADING THE BACK PAIN 2444 01:57:23,920 --> 01:57:26,360 CONSORTIUM RESEARCH PROGRAM OR 2445 01:57:26,360 --> 01:57:31,000 BACPAC PART OF HEAL AN EFFORT TO 2446 01:57:31,000 --> 01:57:33,160 SPEED SCIENTIFIC SOLUTION TO 2447 01:57:33,160 --> 01:57:35,760 STEM THE OPIOID NATIONAL HEALTH 2448 01:57:35,760 --> 01:57:36,000 CRISIS. 2449 01:57:36,000 --> 01:57:39,480 NICHD HAS BEEN AN EARLY 2450 01:57:39,480 --> 01:57:42,160 SUPPORTER OF IT SINCE ITS 2451 01:57:42,160 --> 01:57:43,560 INCEPTION IN 2019. 2452 01:57:43,560 --> 01:57:47,760 CHRONIC LOW PAIN IS ONE OF THE 2453 01:57:47,760 --> 01:57:50,600 MOST COMMON FORMS OF CHRONIC 2454 01:57:50,600 --> 01:57:54,000 PAIN AMONG ADULTS AND IT RANKED 2455 01:57:54,000 --> 01:57:55,800 HIGHEST IN TERMS OF YEARS LIVED 2456 01:57:55,800 --> 01:57:56,440 WITH DISABILITY AMONG HUNDREDS 2457 01:57:56,440 --> 01:58:00,760 OF CONDITIONS. 2458 01:58:00,760 --> 01:58:02,520 CURRENT TREATMENT OPTIONS AREN'T 2459 01:58:02,520 --> 01:58:03,880 EFFECTIVE LEADING TO AN 2460 01:58:03,880 --> 01:58:06,280 INCREASED USE OF OPIOIDS. 2461 01:58:06,280 --> 01:58:10,440 SO BACPAC IS A TRANSLATIONAL 2462 01:58:10,440 --> 01:58:13,320 EFFORT TO DEVELOP PERSONALIZED 2463 01:58:13,320 --> 01:58:14,400 TREATMENTS FOR CHRONIC OR LOW 2464 01:58:14,400 --> 01:58:16,360 BACK PAIN AND WE'RE DELIGHTED TO 2465 01:58:16,360 --> 01:58:18,280 PLAY AN IMPORTANT ROLE IN 2466 01:58:18,280 --> 01:58:25,200 ADDRESSING THIS MAJOR PUBLIC 2467 01:58:25,200 --> 01:58:27,080 HEALTH PROGRAM AND HELP ADDRESS 2468 01:58:27,080 --> 01:58:33,120 THE NATION'S OPIOID EPIDEMIC. 2469 01:58:33,120 --> 01:58:34,440 FOR THOSE INTERESTED IN LEARNING 2470 01:58:34,440 --> 01:58:36,360 MORE VISIT THE NIAMS WEBSITE AND 2471 01:58:36,360 --> 01:58:39,080 FIND US ON FACEBOOK AND YOUTUBE. 2472 01:58:39,080 --> 01:58:40,280 AND TO LEARN MORE ABOUT OUR 2473 01:58:40,280 --> 01:58:42,320 FUNDING OPPORTUNITY 2474 01:58:42,320 --> 01:58:43,800 ANNOUNCEMENTS AND OUR NOTICES OF 2475 01:58:43,800 --> 01:58:45,200 SPECIAL INTEREST, SUBSCRIBE TO 2476 01:58:45,200 --> 01:58:46,920 OUR NEWSLETTER AND FOLLOW OUR 2477 01:58:46,920 --> 01:58:49,000 TWITTER ACCOUNTS. 2478 01:58:49,000 --> 01:58:51,240 AND ON THAT NOTE I WANT TO THANK 2479 01:58:51,240 --> 01:58:52,480 YOU AGAIN FOR THE OPPORTUNITY TO 2480 01:58:52,480 --> 01:58:54,480 PRESENT AND I WOULD BE HAPPY TO 2481 01:58:54,480 --> 01:58:57,200 TAKE ANY QUESTIONS AT THIS TIME. 2482 01:58:57,200 --> 01:59:00,400 I'LL STOP SHARING MY SCREEN TO 2483 01:59:00,400 --> 01:59:04,920 FACILITATE SOME DISCUSSION. 2484 01:59:04,920 --> 01:59:08,640 >> THANK YOU SO MUCH, LINDSEY. 2485 01:59:08,640 --> 01:59:11,000 DR. LANG, A COUNCIL MEMBER HAD 2486 01:59:11,000 --> 01:59:15,040 TO STEP AWAY TO TEACH A CLASS 2487 01:59:15,040 --> 01:59:16,320 BUT WANTED TO MENTION WE SHARE 2488 01:59:16,320 --> 01:59:18,000 INTEREST IN THE AREA OF MEDICAL 2489 01:59:18,000 --> 01:59:18,360 REHABILITATION. 2490 01:59:18,360 --> 01:59:27,040 YOU DID AN AMAZING JOB -- YOU 2491 01:59:27,040 --> 01:59:29,320 MENTIONED SOME AREAS I DIDN'T 2492 01:59:29,320 --> 01:59:33,600 KNOW AND INSTITUTE COLLABORATE 2493 01:59:33,600 --> 01:59:37,040 AND DR. OMBRELLO IS REPRESENTING 2494 01:59:37,040 --> 01:59:38,160 NIAMS IN THE STRATEGIC PLANNING 2495 01:59:38,160 --> 01:59:40,200 EFFORT FOR THE CLINICAL CENTER 2496 01:59:40,200 --> 01:59:41,040 ON PEDIATRIC RESEARCH. 2497 01:59:41,040 --> 01:59:43,480 HE'S BEEN AN ACTIVE MEMBER. 2498 01:59:43,480 --> 01:59:47,800 WE'VE GOTTEN TO KNOW HIM ALREADY 2499 01:59:47,800 --> 01:59:49,480 AND HE'S REALLY PROVIDED 2500 01:59:49,480 --> 01:59:53,480 IMPORTANT INSIGHT. 2501 01:59:53,480 --> 02:00:01,640 WITH THAT QUESTIONS. 2502 02:00:01,640 --> 02:00:04,360 >> I LEARNED A LOT BY PREPARING 2503 02:00:04,360 --> 02:00:05,800 THE PRESENTATION AND FANTASTIC 2504 02:00:05,800 --> 02:00:07,360 TO LEARN THE IN WAYS OUR 2505 02:00:07,360 --> 02:00:09,160 INSTITUTES COLLABORATED. 2506 02:00:09,160 --> 02:00:11,440 I HOPE NOW MOVING FORWARD WE CAN 2507 02:00:11,440 --> 02:00:13,120 IDENTIFY OTHER OPPORTUNITIES TO 2508 02:00:13,120 --> 02:00:17,680 HELP EACH OTHER AND SUPPORT OUR 2509 02:00:17,680 --> 02:00:24,360 SHARED INTERESTS. 2510 02:00:24,360 --> 02:00:31,760 >> THAT'D BE GREAT. 2511 02:00:31,760 --> 02:00:33,240 WAS IT SO EXCEPTIONALLY CLEAR 2512 02:00:33,240 --> 02:00:43,640 THERE ARE NO QUESTIONS? 2513 02:00:45,520 --> 02:00:46,440 >> GREAT PRESENTATION AND 2514 02:00:46,440 --> 02:00:46,840 EXCITING WORK. 2515 02:00:46,840 --> 02:00:49,480 I WANT TO REFLECT THE 2516 02:00:49,480 --> 02:00:50,880 INTERESTING RESULT YOU SHARED ON 2517 02:00:50,880 --> 02:00:52,800 THE GENETIC BURDEN OF DISEASE IN 2518 02:00:52,800 --> 02:00:54,760 CERTAIN PRESENTATIONS. 2519 02:00:54,760 --> 02:00:56,920 WE'RE SEEING THAT ACROSS 2520 02:00:56,920 --> 02:00:57,760 PEDIATRICS. 2521 02:00:57,760 --> 02:00:59,720 I THINK THERE WILL BE CLINICAL 2522 02:00:59,720 --> 02:01:01,760 INDICATORS WHERE RISK OF GENETIC 2523 02:01:01,760 --> 02:01:05,320 DISEASE IS SO HIGH THAT IT FEELS 2524 02:01:05,320 --> 02:01:08,120 LIKE EXOME AND GENOME WILL COME 2525 02:01:08,120 --> 02:01:10,600 INTO PRACTICE. 2526 02:01:10,600 --> 02:01:13,440 AND CLEARLY ROOM FOR SYNERGIES 2527 02:01:13,440 --> 02:01:17,440 IN THE AREA OF PREGNANCY 2528 02:01:17,440 --> 02:01:18,280 MANAGEMENT IN THE PEOPLE WITH 2529 02:01:18,280 --> 02:01:18,880 AUTOIMMUNE CONDITIONS. 2530 02:01:18,880 --> 02:01:21,440 AGAIN, THANKS FOR YOUR 2531 02:01:21,440 --> 02:01:26,680 PRESENTATION. 2532 02:01:26,680 --> 02:01:27,760 >> PEDIATRIC PRESENTATIONS OF 2533 02:01:27,760 --> 02:01:30,240 DISEASE CAN BE SO INFORMATIVE 2534 02:01:30,240 --> 02:01:31,720 AND WE SEE IT IN PEDIATRIC FORMS 2535 02:01:31,720 --> 02:01:33,480 OF LUPUS WITH EARLY 2536 02:01:33,480 --> 02:01:34,560 PRESENTATIONS, SEVERE DISEASE 2537 02:01:34,560 --> 02:01:36,920 AND I AGREE THAT GENETIC 2538 02:01:36,920 --> 02:01:39,520 ANALYSIS IN THOSE POPULATIONS IS 2539 02:01:39,520 --> 02:01:40,760 LIKELY TO BE VERY INFORMATIVE. 2540 02:01:40,760 --> 02:01:41,160 COMPLETELY AGREE. 2541 02:01:41,160 --> 02:01:51,320 THANK YOU. 2542 02:01:53,040 --> 02:01:54,720 >> THAT'S MY FAVORITE PART OF 2543 02:01:54,720 --> 02:01:55,760 BEING PART OF COUNCIL IS 2544 02:01:55,760 --> 02:01:58,080 LEARNING ABOUT THE BREADTH AND 2545 02:01:58,080 --> 02:02:05,480 SCOPE ACROSS NIH AND THE 2546 02:02:05,480 --> 02:02:11,360 PARTNERSHIP. 2547 02:02:11,360 --> 02:02:12,880 AND THERE'S MANY TOUCH POINTS 2548 02:02:12,880 --> 02:02:14,160 BETWEEN I.C.s AND SHARED 2549 02:02:14,160 --> 02:02:16,000 EFFORTS, WHAT ARE YOUR THOUGHTS 2550 02:02:16,000 --> 02:02:20,760 IN HOW YOU ARE THINKING ABOUT 2551 02:02:20,760 --> 02:02:23,520 THE SHARING OR INTEGRATION OF 2552 02:02:23,520 --> 02:02:26,760 THE DATA ASSETS. 2553 02:02:26,760 --> 02:02:30,160 WE HEARD ABOUT AN EXAMPLE FROM 2554 02:02:30,160 --> 02:02:32,560 NICHD'S DATA WAREHOUSE, HOW ARE 2555 02:02:32,560 --> 02:02:33,560 YOU THINKING ABOUT 2556 02:02:33,560 --> 02:02:33,880 STRATEGICALLY? 2557 02:02:33,880 --> 02:02:36,360 >> THAT'S AN IMPORTANT TOPIC AND 2558 02:02:36,360 --> 02:02:37,520 ONE WE'VE BEEN TALKING ABOUT A 2559 02:02:37,520 --> 02:02:41,480 LOT AND HAS BEEN ON MY MIND 2560 02:02:41,480 --> 02:02:48,760 BEFORE I GOT TO THE NIH. 2561 02:02:48,760 --> 02:02:50,800 AN INSTITUTE HAS TWO COMPONENTS. 2562 02:02:50,800 --> 02:02:54,200 ONE THAT FOCUSES INTRAMURALLY TO 2563 02:02:54,200 --> 02:02:57,440 MAKE SURE OUR EFFORTS WITHIN THE 2564 02:02:57,440 --> 02:03:01,360 NIH ACROSS OUR I.C.s AND 2565 02:03:01,360 --> 02:03:03,920 CONSIDERING WHAT'S HAPPENING AT 2566 02:03:03,920 --> 02:03:08,200 THE OFFICE OF OUR DIRECTOR ARE 2567 02:03:08,200 --> 02:03:09,960 MAXIMALLY MUTUALLY INFORMATIVE 2568 02:03:09,960 --> 02:03:12,080 AND SET THEM UP FOR SUCCESS AND 2569 02:03:12,080 --> 02:03:13,480 COLLABORATION AND INTEGRATION. 2570 02:03:13,480 --> 02:03:15,600 THE STRUCTURES OF THE NIH CAN 2571 02:03:15,600 --> 02:03:17,960 PRESENT AN OBSTACLE TO 2572 02:03:17,960 --> 02:03:19,440 COORDINATION BUT THERE'S A LOT 2573 02:03:19,440 --> 02:03:20,600 OF INTEREST IN DOING EVERYTHING 2574 02:03:20,600 --> 02:03:23,320 WE CAN TO OVERCOME THAT. 2575 02:03:23,320 --> 02:03:26,440 WE HAVE A PILOT STUDY WE'VE 2576 02:03:26,440 --> 02:03:28,800 INITIATED IN OUR RFP TO UNDER 2577 02:03:28,800 --> 02:03:30,160 THE ISSUES. 2578 02:03:30,160 --> 02:03:32,040 WE LAUNCHED LAST WEEK A DATA 2579 02:03:32,040 --> 02:03:33,400 SCIENCE STRATEGY WORKING GROUP 2580 02:03:33,400 --> 02:03:35,840 OF OUR COUNCIL SO THEY CAN BE 2581 02:03:35,840 --> 02:03:38,560 FOCUSSING WITH THE PERSPECTIVE 2582 02:03:38,560 --> 02:03:40,280 ON THE EXTRAMURAL COMMUNITY, 2583 02:03:40,280 --> 02:03:40,880 WHAT THE EXTRAMURAL 2584 02:03:40,880 --> 02:03:41,840 INVESTIGATORS NEED, WHAT'S 2585 02:03:41,840 --> 02:03:44,720 HAPPENING AT THE NIH WE SHOULD 2586 02:03:44,720 --> 02:03:46,240 BE AWARE OF THAT CAN BE 2587 02:03:46,240 --> 02:03:47,840 LEVERAGED AND WHAT CAN WE AS 2588 02:03:47,840 --> 02:03:50,000 NIAMS, A RELATIVELY SMALL 2589 02:03:50,000 --> 02:03:51,360 INSTITUTE, WE'RE NOT A DATA 2590 02:03:51,360 --> 02:03:53,520 SCIENCE EXPERT BUT WHAT CAN WE 2591 02:03:53,520 --> 02:03:56,320 DO TO SUPPORT THE EXTRAMURAL 2592 02:03:56,320 --> 02:03:58,440 COMMUNITY AND IN THE CONTEXT OF 2593 02:03:58,440 --> 02:04:00,400 THE BROADER EFFORTS THE 2594 02:04:00,400 --> 02:04:02,200 ACCELERATING MEDICINES 2595 02:04:02,200 --> 02:04:03,240 PARTNERSHIP IS AN EXAMPLE IT'S 2596 02:04:03,240 --> 02:04:04,400 IMPORTANT WE THINK WITH THE 2597 02:04:04,400 --> 02:04:09,480 ISSUES AT THE OUTSET OF THE 2598 02:04:09,480 --> 02:04:17,240 STUDIES AS WE MOVE FORWARD WITH 2599 02:04:17,240 --> 02:04:18,360 EFFORTS IN AUTOIMMUNE DISEASE 2600 02:04:18,360 --> 02:04:20,520 POSITION OURSELVES TO SHARE DATA 2601 02:04:20,520 --> 02:04:22,960 ACROSS THESE BROAD CATEGORIES OF 2602 02:04:22,960 --> 02:04:24,960 CONDITIONS AND DISCOVER 2603 02:04:24,960 --> 02:04:25,800 RELATIONSHIPS THAT WE DIDN'T 2604 02:04:25,800 --> 02:04:28,320 THINK ABOUT AND WEREN'T ON OUR 2605 02:04:28,320 --> 02:04:30,800 RADAR SCREEN AND LIST OF 2606 02:04:30,800 --> 02:04:32,480 CANDIDATE SCREENS BUT CAN HELP 2607 02:04:32,480 --> 02:04:33,440 ACCELERATE PROGRESS IN THE 2608 02:04:33,440 --> 02:04:33,920 AREAS. 2609 02:04:33,920 --> 02:04:36,400 WE'RE ALREADY SEEING THROUGH THE 2610 02:04:36,400 --> 02:04:37,440 ACCELERATED MEDICINES 2611 02:04:37,440 --> 02:04:45,480 PARTNERSHIP MOLECULES POP UP IN 2612 02:04:45,480 --> 02:04:55,520 PA 2613 02:04:56,360 --> 02:04:56,920 PA 2614 02:04:56,920 --> 02:04:58,640 PARKINSON'S AND THERE'S A GOAL 2615 02:04:58,640 --> 02:05:00,920 OF POSITIONING AND COORDINATING 2616 02:05:00,920 --> 02:05:04,120 EFFORTS SO THAT WE CAN LEARN AS 2617 02:05:04,120 --> 02:05:04,800 MUCH POSSIBLE ACROSS THE 2618 02:05:04,800 --> 02:05:07,520 DIFFERENT EFFORTS AS WE MOVE 2619 02:05:07,520 --> 02:05:13,440 FORWARD AND I HOPE WE CAN HAVE 2620 02:05:13,440 --> 02:05:15,720 THAT POINT OF VIEW MOVING 2621 02:05:15,720 --> 02:05:18,360 FORWARD AND HEAL AND COMMON FUND 2622 02:05:18,360 --> 02:05:19,680 PROJECTS TO MAXIMIZE OUR 2623 02:05:19,680 --> 02:05:22,360 INVESTMENT IN PROJECTS AND 2624 02:05:22,360 --> 02:05:22,840 ACCELERATE PROGRESS. 2625 02:05:22,840 --> 02:05:24,880 A BIG TOPIC. 2626 02:05:24,880 --> 02:05:25,520 >> IT IS. 2627 02:05:25,520 --> 02:05:32,280 THANK YOU FOR THE ANSWER. 2628 02:05:32,280 --> 02:05:33,960 >> BONNIE. 2629 02:05:33,960 --> 02:05:35,280 >> THANK YOU, DR. CRISWELL. 2630 02:05:35,280 --> 02:05:36,520 THAT WAS INFORMATIVE AND GREAT 2631 02:05:36,520 --> 02:05:39,360 TO HEAR A SHOUT OUT TO MY 2632 02:05:39,360 --> 02:05:42,400 COLLEAGUE, DR. SANDBORG HERE AT 2633 02:05:42,400 --> 02:05:42,640 STANFORD. 2634 02:05:42,640 --> 02:05:48,240 ONE QUESTION I HAVE FOR YOU IS 2635 02:05:48,240 --> 02:05:53,600 SPECIFICALLY AROUND THE ISSUE IS 2636 02:05:53,600 --> 02:06:00,000 IT'S IMPACTFUL TO PARTNER WITH 2637 02:06:00,000 --> 02:06:04,600 INTERNAL MEDICINE 2638 02:06:04,600 --> 02:06:05,480 RHEUMATOLOGISTS AND THE 2639 02:06:05,480 --> 02:06:06,760 DIFFICULTY POSTCOVID AND IN THE 2640 02:06:06,760 --> 02:06:12,960 LAST 10 YEARS IN RECRUITING 2641 02:06:12,960 --> 02:06:13,720 PEDIATRIC SCHOLARS INTO 2642 02:06:13,720 --> 02:06:18,800 SPECIALTIES FOR A LOT OF REASONS 2643 02:06:18,800 --> 02:06:25,800 BUT IN PARTICULAR THE ABILITY TO 2644 02:06:25,800 --> 02:06:28,360 GET TRACTION AND PARTNERING WITH 2645 02:06:28,360 --> 02:06:29,200 INTERNAL MEDICINE. 2646 02:06:29,200 --> 02:06:32,720 MAYBE I MISSED IT BUT ARE THERE 2647 02:06:32,720 --> 02:06:36,400 FOR EXAMPLE, TRAINING GRANTS AND 2648 02:06:36,400 --> 02:06:41,480 OTHER MECHANISMS IN PLACE WHERE 2649 02:06:41,480 --> 02:06:50,600 THEY CAN ENCOURAGE PEDIATRIC 2650 02:06:50,600 --> 02:06:51,640 RHEUMATOLOGISTS AND ENCOURAGE 2651 02:06:51,640 --> 02:06:52,240 SCHOLARSHIP IN THE PEDIATRIC 2652 02:06:52,240 --> 02:07:02,360 REALM. 2653 02:07:02,680 --> 02:07:06,320 >> UCSF IS FOR THE ENOUGH TO 2654 02:07:06,320 --> 02:07:08,520 HAVE A PEDIATRIC RHEUMATOLOGY 2655 02:07:08,520 --> 02:07:09,560 TRAINING PROGRAM AS WELL AS AN 2656 02:07:09,560 --> 02:07:13,000 ADULT RHEUMATOLOGY TRAINING 2657 02:07:13,000 --> 02:07:13,240 PROGRAM. 2658 02:07:13,240 --> 02:07:14,920 WE MADE EVERY EFFORT POSSIBLE TO 2659 02:07:14,920 --> 02:07:16,400 COLLABORATE. 2660 02:07:16,400 --> 02:07:18,600 IT WAS A WIN-WIN RELATIONSHIP. 2661 02:07:18,600 --> 02:07:22,080 SURE, THE ADULT RHEUMATOLOGY 2662 02:07:22,080 --> 02:07:23,680 PROGRAM AND THERE'S MORE 2663 02:07:23,680 --> 02:07:24,680 PATIENTS, THERE'S MORE SOLID 2664 02:07:24,680 --> 02:07:27,000 BASE OF FUNDING, MORE 2665 02:07:27,000 --> 02:07:29,000 INVESTIGATORS IN THIS AREA. 2666 02:07:29,000 --> 02:07:31,360 WE HAVE A LOT TO SHARE IN TERMS 2667 02:07:31,360 --> 02:07:33,520 OF INFRASTRUCTURE, TRAINING 2668 02:07:33,520 --> 02:07:35,120 OPPORTUNITIES TO BE 2669 02:07:35,120 --> 02:07:39,960 DERMATOLOGISTS BUT WE HAVE A LOT 2670 02:07:39,960 --> 02:07:41,480 TO LEARN AND PEDIATRIC 2671 02:07:41,480 --> 02:07:43,880 PRESENTATIONS OF DISEASE AND 2672 02:07:43,880 --> 02:07:45,760 THINKING STRATEGICALLY IN TERMS 2673 02:07:45,760 --> 02:07:47,920 OF FUND RAISING EVEN. 2674 02:07:47,920 --> 02:07:48,880 A PARTNERSHIP BETWEEN PEDIATRIC 2675 02:07:48,880 --> 02:07:54,400 AND ADULT SPECIALISTS IS A 2676 02:07:54,400 --> 02:07:56,280 WIN-WIN PROPOSITION. 2677 02:07:56,280 --> 02:07:58,640 UNFORTUNATELY, NOT ALL 2678 02:07:58,640 --> 02:07:59,400 INSTITUTIONS FROM THE 2679 02:07:59,400 --> 02:08:00,040 INSTITUTIONAL STANDPOINT ARE IN 2680 02:08:00,040 --> 02:08:01,720 A POSITION TO BE ABLE TO DO THAT 2681 02:08:01,720 --> 02:08:05,040 BUT ONE OF THE REASONS I'M 2682 02:08:05,040 --> 02:08:06,480 INTERESTED IN SUPPORTING 2683 02:08:06,480 --> 02:08:08,200 PEDIATRIC RESEARCH AND 2684 02:08:08,200 --> 02:08:10,960 PARTNERING WITH THESE 2685 02:08:10,960 --> 02:08:12,600 ORGANIZATIONS IS SO WE CAN HELP 2686 02:08:12,600 --> 02:08:13,000 THEM. 2687 02:08:13,000 --> 02:08:14,840 THE QUESTION I BRING IS HOW CAN 2688 02:08:14,840 --> 02:08:21,440 WE HELP YOU MAKE MORE 2689 02:08:21,440 --> 02:08:22,960 SUCCESSFUL? 2690 02:08:22,960 --> 02:08:26,880 AND WHAT CAN WE PROVIDE TO HELP 2691 02:08:26,880 --> 02:08:28,320 YOU BE MORE SUCCESSFUL. 2692 02:08:28,320 --> 02:08:32,240 THOSE CONVERSATIONS IN THE 2693 02:08:32,240 --> 02:08:36,280 CURRENT ROLE ARE AT THE EARLY 2694 02:08:36,280 --> 02:08:38,680 STAGES BUT I THINK IT WILL BE 2695 02:08:38,680 --> 02:08:39,360 MUTUALLY BENEFICIAL TO PROGRESS 2696 02:08:39,360 --> 02:08:41,200 IN THESE DISEASES. 2697 02:08:41,200 --> 02:08:43,600 I LOOK FORWARD AND OTHER IDEAS 2698 02:08:43,600 --> 02:08:48,400 YOU ALL HAVE ABOUT WHAT WE AS AN 2699 02:08:48,400 --> 02:08:53,480 INSTITUTE CAN BE DOING TO 2700 02:08:53,480 --> 02:08:54,440 SUPPORT TRAINING IN THE 2701 02:08:54,440 --> 02:08:55,840 PEDIATRIC POSITIONS. 2702 02:08:55,840 --> 02:08:57,040 WE WELCOME YOUR SUGGESTIONS. 2703 02:08:57,040 --> 02:08:59,320 >> THANK YOU, BONNIE AND 2704 02:08:59,320 --> 02:08:59,840 LINDSEY. 2705 02:08:59,840 --> 02:09:01,000 I THINK THERE'S AN AREA YOU MAY 2706 02:09:01,000 --> 02:09:04,480 NOT BE AWARE OF WHERE WE HAVE AN 2707 02:09:04,480 --> 02:09:08,440 INTEREST IN OUR STRATEGIC PLAN 2708 02:09:08,440 --> 02:09:12,080 IN THE TRANSITION OF CHILDREN 2709 02:09:12,080 --> 02:09:15,600 WITH CHRONIC DISEASES. 2710 02:09:15,600 --> 02:09:17,240 CHILDREN WITH RHEUMATOID 2711 02:09:17,240 --> 02:09:19,280 ARTHRITIS AS THEY TRANSITION TO 2712 02:09:19,280 --> 02:09:22,720 ADULT CARE AND DIFFICULTIES AND 2713 02:09:22,720 --> 02:09:23,360 CHALLENGES THEY FACE WHEN 2714 02:09:23,360 --> 02:09:25,040 THEY'VE BEEN IN A VERY 2715 02:09:25,040 --> 02:09:26,040 SUPPORTIVE ENVIRONMENT AND NOW 2716 02:09:26,040 --> 02:09:29,480 THEY HAVE TO GET A WHOLE NEW SET 2717 02:09:29,480 --> 02:09:30,880 OF PROVIDERS. 2718 02:09:30,880 --> 02:09:32,560 WE RECENTLY HAD A WORKSHOP 2719 02:09:32,560 --> 02:09:33,200 ADDRESSING THAT. 2720 02:09:33,200 --> 02:09:36,000 WE ALSO HAVE IN OUR STRATEGIC 2721 02:09:36,000 --> 02:09:40,040 PLAN PLACED A FOCUS ON 2722 02:09:40,040 --> 02:09:42,680 ADOLESCENTS BECAUSE THAT'S AN 2723 02:09:42,680 --> 02:09:44,120 AREA WHERE ACROSS NIH THERE 2724 02:09:44,120 --> 02:09:45,200 HADN'T BEEN A LOT OF ATTENTION. 2725 02:09:45,200 --> 02:09:46,440 THOSE MAY BE FUTURE AREAS WHERE 2726 02:09:46,440 --> 02:09:48,240 WE CAN WORK TOGETHER. 2727 02:09:48,240 --> 02:09:50,320 >> I'M HAPPY TO HEAR THAT. 2728 02:09:50,320 --> 02:09:54,400 REFERRING BACK TO UCSF WE HAD A 2729 02:09:54,400 --> 02:09:55,840 CURRENT AND TRANSITIONAL 2730 02:09:55,840 --> 02:09:56,600 CLINICAL WE THOUGHT WERE 2731 02:09:56,600 --> 02:09:58,320 IMPORTANT SO PATIENTS DON'T FALL 2732 02:09:58,320 --> 02:10:02,800 OFF THE RADAR SCREEN AND LOSE 2733 02:10:02,800 --> 02:10:05,480 CARE, SPECIALTY CARE WHEN THEY 2734 02:10:05,480 --> 02:10:06,360 HAVE OTHER CHALLENGES. 2735 02:10:06,360 --> 02:10:08,920 I'D LOVE TO TALK MORE ABOUT THAT 2736 02:10:08,920 --> 02:10:10,880 AND HOW WE CAN LEARN FROM EACH 2737 02:10:10,880 --> 02:10:12,040 OTHER AND HOW TO DO THAT AND 2738 02:10:12,040 --> 02:10:12,400 SUPPORT THAT. 2739 02:10:12,400 --> 02:10:15,760 IT'S REALLY IMPORTANT. 2740 02:10:15,760 --> 02:10:19,080 >> THIS WAS A FANTASTIC TALK. 2741 02:10:19,080 --> 02:10:21,880 YOU REALLY PAID ATTENTION TO OUR 2742 02:10:21,880 --> 02:10:22,120 REQUEST. 2743 02:10:22,120 --> 02:10:26,520 MORE SO THAN WE EXPECTED. 2744 02:10:26,520 --> 02:10:28,480 AND IT WAS A PLEASURE TO HEAR 2745 02:10:28,480 --> 02:10:29,640 FROM YOU. 2746 02:10:29,640 --> 02:10:33,600 I'LL TURN THE VIRTUAL MICROPHONE 2747 02:10:33,600 --> 02:10:35,520 TO DR. RASOOLY FOR OUR NEXT SET 2748 02:10:35,520 --> 02:10:39,120 OF INSTRUCTIONS. 2749 02:10:39,120 --> 02:10:44,880 >> THANK YOU. 2750 02:10:44,880 --> 02:10:46,400 I'M LOOKING AT MY WATCH AND 2751 02:10:46,400 --> 02:10:48,520 WE'RE ACTUALLY RIGHT ON TIME. 2752 02:10:48,520 --> 02:10:50,520 WE MAY BE A LITTLE BIT AHEAD OF 2753 02:10:50,520 --> 02:10:51,000 TIME. 2754 02:10:51,000 --> 02:10:57,480 LET'S TAKE A BREAK AND LET'S 2755 02:10:57,480 --> 02:11:01,360 REJOIN AT 2:35. 2756 02:11:01,360 --> 02:11:02,800 ABOUT 25 MINUTES. 2757 02:11:02,800 --> 02:11:03,160 2:35, ALL RIGHT? 2758 02:11:03,160 --> 02:11:04,520 THANK YOU SO MUCH. 2759 02:11:04,560 --> 02:11:05,120 >>WELCOME BACK. 2760 02:11:05,120 --> 02:11:07,040 I JUST WANTED TO WARN YOU THAT 2761 02:11:07,040 --> 02:11:09,040 WE HAVE A FAIRLY FULL AGENDA 2762 02:11:09,040 --> 02:11:12,400 THIS AFTERNOON SO THERE'S A 2763 02:11:12,400 --> 02:11:14,680 POSSIBILITY WE MAY END SLIGHTLY 2764 02:11:14,680 --> 02:11:15,480 AFTER FIVE THOUGH WE'RE FIVE 2765 02:11:15,480 --> 02:11:17,400 MINUTES AHEAD OF SCHEDULE RIGHT 2766 02:11:17,400 --> 02:11:17,560 NOW. 2767 02:11:17,560 --> 02:11:18,200 MAYBE AS THE NOT GOING TO BE THE 2768 02:11:18,200 --> 02:11:28,320 CASE. 2769 02:11:35,320 --> 02:11:40,960 TODAY IT'S MY GREAT PLEASURE TO 2770 02:11:40,960 --> 02:11:43,280 INTRODUCE DR. LE PICHON. 2771 02:11:43,280 --> 02:11:44,920 SHE'S AN INVESTIGATOR IN THE 2772 02:11:44,920 --> 02:11:46,840 DEVELOPMENT OF NEURODEGENERATION 2773 02:11:46,840 --> 02:11:55,640 AND HAS BEEN WITH US SINCE 2016. 2774 02:11:55,640 --> 02:11:57,040 HER LABORATORY EMPLOYEES MOUSE 2775 02:11:57,040 --> 02:12:02,920 GENETICS AND SCANNING OF THE 2776 02:12:02,920 --> 02:12:05,640 WHOLE BRAIN AND INVESTIGATING 2777 02:12:05,640 --> 02:12:08,760 THE EARLY EVENTS WITH THE ONSET 2778 02:12:08,760 --> 02:12:11,720 AND NEURODEGENERATION OF DISEASE 2779 02:12:11,720 --> 02:12:13,440 AND HER REPORT WILL BE FOLLOWED 2780 02:12:13,440 --> 02:12:15,480 BY OUR VOICE OF THE PARTICIPANTS 2781 02:12:15,480 --> 02:12:20,760 SESSION WHERE WE WILL MAKE THE 2782 02:12:20,760 --> 02:12:22,480 CONNECTION BETWEEN HER RESEARCH 2783 02:12:22,480 --> 02:12:29,840 AND A PERSON AFFECTED BY A 2784 02:12:29,840 --> 02:12:33,560 NEURODEGENERATIVE DISORDER 2785 02:12:33,560 --> 02:12:34,920 >> THANK YOU VERY MUCH. 2786 02:12:34,920 --> 02:12:36,960 I'M A TENURE TRACK INVESTIGATOR 2787 02:12:36,960 --> 02:12:42,080 AT NICHD AND I'VE BEEN HERE 2788 02:12:42,080 --> 02:12:43,760 SINCE 2016 TODAY I THOUGHT I'D 2789 02:12:43,760 --> 02:12:45,200 SHARE A SPECIFIC PROJECT NOT 2790 02:12:45,200 --> 02:12:47,960 REALLY A GENERAL OVERVIEW OF MY 2791 02:12:47,960 --> 02:12:52,840 PROGRAM BUT RATHER A PROJECT AS 2792 02:12:52,840 --> 02:12:58,360 THE SPECIFIC TO RELATED TO THE 2793 02:12:58,360 --> 02:12:59,280 VOICE OF THE PARTICIPANTS. 2794 02:12:59,280 --> 02:13:05,000 THIS HAS BEEN A PARTICULARLY 2795 02:13:05,000 --> 02:13:05,840 FRUITFUL AND INTERESTING 2796 02:13:05,840 --> 02:13:06,560 COLLABORATION WITH OTHER 2797 02:13:06,560 --> 02:13:09,120 INVESTIGATORS AT THE NIH AND AT 2798 02:13:09,120 --> 02:13:11,240 UNIFORM HEALTH SERVICES ACROSS 2799 02:13:11,240 --> 02:13:21,440 THE STREET. 2800 02:13:29,040 --> 02:13:34,920 THE TITLE OF MY TALK IS 2801 02:13:34,920 --> 02:13:37,120 PRECISION MOUSE MODELS OF 2802 02:13:37,120 --> 02:13:42,920 CHILDHOOD ALS CAUSED BY 2803 02:13:42,920 --> 02:13:47,600 EXCESSIVE SPHINGOLIPID 2804 02:13:47,600 --> 02:13:47,960 SYNTHESIS. 2805 02:13:47,960 --> 02:13:51,760 YOU'LL HEAR MORE ABOUT THE 2806 02:13:51,760 --> 02:13:56,200 PATIENT SIDE DIRECTLY AFTER. 2807 02:13:56,200 --> 02:13:58,160 WE STUDY NEURODEGENERATION 2808 02:13:58,160 --> 02:13:58,600 BROADLY. 2809 02:13:58,600 --> 02:14:01,360 WE'RE INTERESTED IN COMMON 2810 02:14:01,360 --> 02:14:05,240 MECHANISMS UNDERLYING 2811 02:14:05,240 --> 02:14:06,720 NEURODEGENERATION AND PATHWAYS 2812 02:14:06,720 --> 02:14:09,360 FOLLOWING NERVE INJURY AND 2813 02:14:09,360 --> 02:14:14,920 TRAUMATIC BRAIN AND NERVE 2814 02:14:14,920 --> 02:14:16,040 INJURIES. 2815 02:14:16,040 --> 02:14:18,680 WE HAVE MOUSE MUTATION AND STUDY 2816 02:14:18,680 --> 02:14:22,560 MOUSE INJURY STUDYING THE MOUSE 2817 02:14:22,560 --> 02:14:26,040 MODELS AND WE'RE INTERESTED IN 2818 02:14:26,040 --> 02:14:28,240 CELL SPECIFIC RESPONSES AND LOOK 2819 02:14:28,240 --> 02:14:30,000 AT CELL TECHNOLOGIES. 2820 02:14:30,000 --> 02:14:32,680 ANOTHER MODEL WE ARE ALSO USING 2821 02:14:32,680 --> 02:14:36,840 IN THE LAB NOW ARE HUMAN IPSC 2822 02:14:36,840 --> 02:14:38,040 DERIVED NEURONS TO STUDY 2823 02:14:38,040 --> 02:14:41,920 TRANSLATABILITY OF OUR FINDINGS 2824 02:14:41,920 --> 02:14:46,640 IN HUMAN CELLS AND HAVE A 2825 02:14:46,640 --> 02:14:49,120 TRACTABLE SYSTEM. 2826 02:14:49,120 --> 02:14:58,040 IN SIMPLE PERMS NEURO GENERATION 2827 02:14:58,040 --> 02:15:01,240 CAN BE OF HAPPEN DURING THE LIFE 2828 02:15:01,240 --> 02:15:04,520 SPAN AND WE STUDY 2829 02:15:04,520 --> 02:15:05,200 NEURODEGENERATION AND INTERESTED 2830 02:15:05,200 --> 02:15:09,680 HOW SPECIFIC MUTATIONS MAY LEAD 2831 02:15:09,680 --> 02:15:10,440 TO A DYSFUNCTION AND 2832 02:15:10,440 --> 02:15:11,040 DEGENERATION OF THE NERVOUS 2833 02:15:11,040 --> 02:15:18,280 SYSTEM. 2834 02:15:18,280 --> 02:15:21,480 WITH TODAY'S TECHNOLOGY MAKING 2835 02:15:21,480 --> 02:15:23,480 PRECISION MOUSE MODELS USING 2836 02:15:23,480 --> 02:15:24,720 CRISPR CAS 9 TECHNOLOGY IN MANY 2837 02:15:24,720 --> 02:15:28,400 CASES WHERE WE KNOW OF MUTATIONS 2838 02:15:28,400 --> 02:15:32,560 THAT CAUSE NEURODEGENERATION THE 2839 02:15:32,560 --> 02:15:39,040 GENE IS WELL CONSERVED IN THE 2840 02:15:39,040 --> 02:15:39,520 MOUSE. 2841 02:15:39,520 --> 02:15:44,040 WE CAN EDIT THE BASES THAT 2842 02:15:44,040 --> 02:15:46,160 CORRESPOND TO THE HUMAN MUTATION 2843 02:15:46,160 --> 02:15:49,800 AND STUDY AND CHARACTERIZE WHAT 2844 02:15:49,800 --> 02:15:50,920 PATHOLOGY DEVELOPS AND USE THE 2845 02:15:50,920 --> 02:15:53,920 WONDERFUL NEW TOOLS WE HAVE AT 2846 02:15:53,920 --> 02:15:54,520 OUR DISPOSAL IN NEUROSCIENCE 2847 02:15:54,520 --> 02:15:59,760 TODAY. 2848 02:15:59,760 --> 02:16:00,760 WHERE HE CAN LOOK AT THE 2849 02:16:00,760 --> 02:16:06,000 PATHWAYS THAT LEAD TO MUTATION 2850 02:16:06,000 --> 02:16:10,520 AND DISEASE AND IDENTIFY WHICH 2851 02:16:10,520 --> 02:16:13,760 CELL TYPES ARE INVOLVED AND 2852 02:16:13,760 --> 02:16:15,840 IDENTIFY POTENTIAL TARGETS. 2853 02:16:15,840 --> 02:16:17,440 IF WE COME UP WITH GOOD 2854 02:16:17,440 --> 02:16:19,880 PHENOTYPES IN THE MOUSE MODELS 2855 02:16:19,880 --> 02:16:26,920 AMENABLE TO THERAPIES THERE'S A 2856 02:16:26,920 --> 02:16:29,520 STEP TO GO ON TO TREAT HUMANS 2857 02:16:29,520 --> 02:16:36,560 BUT IT'S A GOOD FIRST STEP AND 2858 02:16:36,560 --> 02:16:38,480 IN MANY CASES WE DON'T HAVE 2859 02:16:38,480 --> 02:16:42,280 OTHER WAYS OF STUDIES WHAT WHAT 2860 02:16:42,280 --> 02:16:42,960 HAPPENS EARLIER IN THE DISEASE 2861 02:16:42,960 --> 02:16:44,680 PROCESS OR PRECEDING ONSET OF 2862 02:16:44,680 --> 02:16:45,360 SYMPTOMS. 2863 02:16:45,360 --> 02:16:47,920 I DO THINK THE MOUSE MODELS CAN 2864 02:16:47,920 --> 02:16:49,960 BE INCREDIBLY VALUABLE. 2865 02:16:49,960 --> 02:16:52,080 SO WHAT WE SET OUT TO DO AND 2866 02:16:52,080 --> 02:16:58,520 THIS WAS EARLY ON WHEN I JOINED 2867 02:16:58,520 --> 02:17:04,440 NICHD, I HEARD OF ONGOING WORK 2868 02:17:04,440 --> 02:17:10,360 ONE AT NINDS AND ONE AT NIA AND 2869 02:17:10,360 --> 02:17:10,960 ALL COLLABORATIVE EFFORTS BUT 2870 02:17:10,960 --> 02:17:14,320 THIS IS WHERE THE WORK OF 2871 02:17:14,320 --> 02:17:15,600 CLINICIAN COLLEAGUES OF MINE AND 2872 02:17:15,600 --> 02:17:24,240 SO AT NIMDS WE HAD DR. MOHASSEL 2873 02:17:24,240 --> 02:17:28,880 AND THE GROUP OF BRIAN TRAINOR 2874 02:17:28,880 --> 02:17:31,840 AT NIA AND THEY HAVE NOVEL 2875 02:17:31,840 --> 02:17:37,600 MUTATIONS IN THE GENE SPCTL1 2876 02:17:37,600 --> 02:17:39,920 THAT ARE ASSOCIATED WITH 2877 02:17:39,920 --> 02:17:40,960 CHILDHOOD ONSET ALS. 2878 02:17:40,960 --> 02:17:44,880 THESE ARE THE FIRST MONOGEN IT 2879 02:17:44,880 --> 02:17:47,120 METABOLOMIC MUTATIONS ASSOCIATED 2880 02:17:47,120 --> 02:17:47,600 WITH ALS. 2881 02:17:47,600 --> 02:17:54,920 A BRIEF DESCRIPTION OF WHAT IS 2882 02:17:54,920 --> 02:17:58,800 ALS, IT'S A FATAL 2883 02:17:58,800 --> 02:17:59,680 NEUROGENERATIVE DISEASE WHERE 2884 02:17:59,680 --> 02:18:02,080 THE PERSON'S BRAIN LOSES 2885 02:18:02,080 --> 02:18:04,000 CONNECTION WITH THE MUSCLES AND 2886 02:18:04,000 --> 02:18:07,720 LOSE THE ABILITY TO WALK, TALK, 2887 02:18:07,720 --> 02:18:12,840 EAT AND EVENTUALLY BREATHE. 2888 02:18:12,840 --> 02:18:21,800 THE ONSET CAN STRIKE ANY TIME. 2889 02:18:21,800 --> 02:18:22,560 WHAT'S PARTICULARLY INTERESTING 2890 02:18:22,560 --> 02:18:25,520 WHEN I LEARNED ABOUT THE CASES 2891 02:18:25,520 --> 02:18:29,280 IS THIS WAS REALLY A JUVENILE 2892 02:18:29,280 --> 02:18:33,240 ONSET KIND OF ALS WHICH WE THINK 2893 02:18:33,240 --> 02:18:34,400 MUST INVOLVE NEURODEVELOPMENTAL 2894 02:18:34,400 --> 02:18:36,720 COMPONENT IN ADDITION TO PERHAPS 2895 02:18:36,720 --> 02:18:41,920 THE LATER PROGRESSIVE 2896 02:18:41,920 --> 02:18:43,360 NEURODEGENERATION AND AS 2897 02:18:43,360 --> 02:18:44,360 MENTIONED BEFORE WHAT WAS 2898 02:18:44,360 --> 02:18:46,440 STRIKING ABOUT THESE CASES IS 2899 02:18:46,440 --> 02:18:50,160 THEY'RE THE FIRST DESCRIBED TO 2900 02:18:50,160 --> 02:18:50,960 METABOLOMIC MUTATIONS ASSOCIATED 2901 02:18:50,960 --> 02:18:51,600 WITH ALS. 2902 02:18:51,600 --> 02:18:53,200 FIRST I'LL GIVE BACKGROUND ON 2903 02:18:53,200 --> 02:18:55,880 THE BIO CHEMICAL PATHWAY AND 2904 02:18:55,880 --> 02:18:57,240 INTRODUCE THE MOLECULES INVOLVED 2905 02:18:57,240 --> 02:18:58,960 AND THEN I'M GOING TO SHOW YOU 2906 02:18:58,960 --> 02:19:00,120 SOME OF THE DATA FROM OUR MOUSE 2907 02:19:00,120 --> 02:19:09,640 MODELS. 2908 02:19:09,640 --> 02:19:16,520 THIS IS INITIATED BY THIS ENZYME 2909 02:19:16,520 --> 02:19:19,680 AND IT'S A SUBUNIT OF THIS 2910 02:19:19,680 --> 02:19:20,160 COMPLEX. 2911 02:19:20,160 --> 02:19:26,880 SPT CATALYZES THE CONDENSATION 2912 02:19:26,880 --> 02:19:29,960 OF SERINE AND HAS A LIPID FROM 2913 02:19:29,960 --> 02:19:34,640 WHICH ALL OTHERS ARISE. 2914 02:19:34,640 --> 02:19:45,120 AND SO THEIR LONG-CHAIN BASES 2915 02:19:50,840 --> 02:19:53,960 AND THESE ARE ESSENTIAL LIPIDS 2916 02:19:53,960 --> 02:19:55,920 OF MEMBRANES IN MAMMALIAN CELLS 2917 02:19:55,920 --> 02:19:58,040 AND HAVE A WIDE SPECTRUM OF 2918 02:19:58,040 --> 02:19:58,520 FUNCTION. 2919 02:19:58,520 --> 02:20:01,680 THEY'RE INVOLVED IN CELL GROWTH, 2920 02:20:01,680 --> 02:20:02,560 ADHESION, MIGRATION, CELL DEATH 2921 02:20:02,560 --> 02:20:07,000 AND YOU NAME IT. 2922 02:20:07,000 --> 02:20:09,720 SPT ACTIVITY REQUIRES CLOSE 2923 02:20:09,720 --> 02:20:10,360 HOMEOSTATIC REGULATION. 2924 02:20:10,360 --> 02:20:14,080 FIRST YOU NEED TO MAKE SURE 2925 02:20:14,080 --> 02:20:17,280 YOU'RE MAKING ADEQUATE 2926 02:20:17,280 --> 02:20:22,120 SPHINGOLIPID AND WANT TO AVOID 2927 02:20:22,120 --> 02:20:24,720 TOXICITY SO THE LEVELS HAVE TO 2928 02:20:24,720 --> 02:20:26,960 BE REGULATED. 2929 02:20:26,960 --> 02:20:28,120 THROUGH SENSING LEVELS OF DOWN 2930 02:20:28,120 --> 02:20:33,600 STREAM SPHINGOLIPIDS IN 2931 02:20:33,600 --> 02:20:44,080 PARTICULAR THE CERAMIDES AND 2932 02:20:47,680 --> 02:20:48,880 THIS COULD BE IMPORTANT TO WHAT 2933 02:20:48,880 --> 02:20:50,360 I'LL SHOW YOU LATER ON. 2934 02:20:50,360 --> 02:20:53,440 THIS IS A LITTLE BIT MORE IN 2935 02:20:53,440 --> 02:20:54,880 DETAIL FOR PATHWAY WITH THE 2936 02:20:54,880 --> 02:20:57,520 NAMES BUNT A FEW CHEMICAL 2937 02:20:57,520 --> 02:20:59,120 STRUCTURES TO SITUATE YOU. 2938 02:20:59,120 --> 02:21:04,960 CERAMIDES HAVE BEEN LINKED TO 2939 02:21:04,960 --> 02:21:06,480 SIGNALLING CELL DEATH. 2940 02:21:06,480 --> 02:21:10,920 WE HAVE IMPORTANT COMPONENTS OF 2941 02:21:10,920 --> 02:21:12,760 THE MYELIN SHEATH AND THE 2942 02:21:12,760 --> 02:21:14,920 CHEMICAL STRUCTURES THERE'S 2943 02:21:14,920 --> 02:21:17,640 VARIOUS MODIFICATIONS ON EVERY 2944 02:21:17,640 --> 02:21:28,200 RADICAL GROUP AND THERE COULD BE 2945 02:21:34,200 --> 02:21:37,280 DISTINCT BIOLOGICAL FUNCTIONS 2946 02:21:37,280 --> 02:21:41,920 WHICH OF YET TO BE UNCOVERED AND 2947 02:21:41,920 --> 02:21:43,000 BACK TO THE SPL GENE THE FIRST 2948 02:21:43,000 --> 02:21:46,080 STEP IN THE PATHWAY. 2949 02:21:46,080 --> 02:21:49,000 PREVIOUSLY NO MUTATIONS IN THIS 2950 02:21:49,000 --> 02:21:52,960 GENE ACTUALLY CAUSED HEREDITARY 2951 02:21:52,960 --> 02:21:56,720 AND SENSORY HSAN 1 AND THE 2952 02:21:56,720 --> 02:22:02,920 LOCATION OF OF THE MUTATIONS I'M 2953 02:22:02,920 --> 02:22:06,120 SHOWING IN THE DIAGRAM AND 2954 02:22:06,120 --> 02:22:07,760 PREVIOUS HAS WORK WHEN IT'S 2955 02:22:07,760 --> 02:22:10,080 MUTATED IN ANY OF THESE 2956 02:22:10,080 --> 02:22:11,960 LOCATIONS ASSOCIATED WITH THE 2957 02:22:11,960 --> 02:22:15,280 HSAN 1 SYNDROME, ONE OF THE MAIN 2958 02:22:15,280 --> 02:22:18,920 DRIVERS OF DISEASE IS THAT THE 2959 02:22:18,920 --> 02:22:23,600 MUTATION CAUSES SPT TO CHANGE 2960 02:22:23,600 --> 02:22:28,480 AFFINITY AND THIS CAUSES THE 2961 02:22:28,480 --> 02:22:39,040 PRODUCTION OF THE LIPIDS OPPOSED 2962 02:22:41,960 --> 02:22:51,760 TO THE DEOXYSPHINGOLIPIDS AND 2963 02:22:51,760 --> 02:22:53,160 IT'S BEEN CATEGORIZED IN THE 2964 02:22:53,160 --> 02:22:54,760 LAST FEW DECADES BUT THE 2965 02:22:54,760 --> 02:22:57,760 CHILDHOOD MUTATIONS THAT HAVE 2966 02:22:57,760 --> 02:23:00,160 BEEN LINKED TO SPLTC1 CLUSTER IN 2967 02:23:00,160 --> 02:23:02,920 THE DIFFERENT REGION OF THE 2968 02:23:02,920 --> 02:23:03,160 PROTEIN. 2969 02:23:03,160 --> 02:23:04,280 THIS WAS INTERESTING BECAUSE 2970 02:23:04,280 --> 02:23:05,640 THEY'RE ALL CLUSTERING IN THE 2971 02:23:05,640 --> 02:23:07,480 DOMAIN SHOWN IN RED AND HERE'S 2972 02:23:07,480 --> 02:23:17,680 AN EXAMPLE. 2973 02:23:18,960 --> 02:23:21,120 WORK FROM A GROUP SHOWED IN 2974 02:23:21,120 --> 02:23:22,600 PATIENTS WITH THESE MUTATIONS, 2975 02:23:22,600 --> 02:23:26,920 WE DON'T REALLY DETECT AN 2976 02:23:26,920 --> 02:23:30,240 ELEVATION IN THE 2977 02:23:30,240 --> 02:23:33,200 DEOXYSPHINGOLIPIDS AS WHAT IS 2978 02:23:33,200 --> 02:23:35,920 DETECTED IN THE HSAN PATIENTS 2979 02:23:35,920 --> 02:23:39,920 WHO HAVE THIS NEUROPATHY TYPE OF 2980 02:23:39,920 --> 02:23:41,040 PHENOTYPE. 2981 02:23:41,040 --> 02:23:42,120 INSTEAD, THERE WAS A DIFFERENT 2982 02:23:42,120 --> 02:23:43,960 HYPOTHESIS FOR WHAT THE 2983 02:23:43,960 --> 02:23:44,680 MUTATIONS ASSOCIATED WITH ALS 2984 02:23:44,680 --> 02:23:47,360 ARE DOING TO THE MOLECULE. 2985 02:23:47,360 --> 02:23:53,960 THIS IS GREATLY AIDED BY THE 2986 02:23:53,960 --> 02:23:58,920 RECENT CRYO EN STRUCTURE AND TWO 2987 02:23:58,920 --> 02:24:00,440 STUDIES PUBLISHED LAST YEAR 2988 02:24:00,440 --> 02:24:05,920 SHOWING THE EN STRUCK TEAR OF 2989 02:24:05,920 --> 02:24:08,160 SPTLC AND HIGHLIGHTS HOW THE ALS 2990 02:24:08,160 --> 02:24:12,520 VARIANTS AND SPTLC1 CLUSTER 2991 02:24:12,520 --> 02:24:12,880 HERE. 2992 02:24:12,880 --> 02:24:22,680 THE YELLOW IS SPTLC1 AND THE 2993 02:24:22,680 --> 02:24:26,160 ENZYME RESIDES AND YOU CAN SEE 2994 02:24:26,160 --> 02:24:27,720 SOME OTHER MUTATIONS HERE IN THE 2995 02:24:27,720 --> 02:24:29,200 LIGAND BINDING DOMAIN AND THE 2996 02:24:29,200 --> 02:24:32,280 ALS LINKED ONES ARE IN THE TRANS 2997 02:24:32,280 --> 02:24:37,040 MEMBRANE DOMAIN. 2998 02:24:37,040 --> 02:24:41,280 THIS IS EXACTLY WHERE THE 2999 02:24:41,280 --> 02:24:44,520 NEGATIVE REGULATOR GENE 3000 02:24:44,520 --> 02:24:44,800 INTERACTS. 3001 02:24:44,800 --> 02:24:45,960 IT'S THOUGHT THIS FACTOR 3002 02:24:45,960 --> 02:24:52,320 COMPETES WITH SUBSTRATE BINDING. 3003 02:24:52,320 --> 02:24:54,560 IF THESE RESIDUES ARE MUTATED IT 3004 02:24:54,560 --> 02:24:56,840 CAN REDUCE THE AFFINITY AND 3005 02:24:56,840 --> 02:24:58,760 REALLY ALTER THE NEGATIVE 3006 02:24:58,760 --> 02:25:00,280 REGULATION OF THE COMPLEX SO THE 3007 02:25:00,280 --> 02:25:05,600 COMPLEX AND THE ENZYME WOULD BE 3008 02:25:05,600 --> 02:25:06,400 OVERPRODU 3009 02:25:06,400 --> 02:25:08,600 OVERPRODUCING LIPIDS. 3010 02:25:08,600 --> 02:25:09,720 HERE'S THE ALTERNATIVE 3011 02:25:09,720 --> 02:25:12,200 HYPOTHESIS THAT THESE MUTATIONS 3012 02:25:12,200 --> 02:25:17,120 CAUSE AN INCREASE IN THE CAN 3013 02:25:17,120 --> 02:25:17,920 CANONICAL PRODUCTS OF THE 3014 02:25:17,920 --> 02:25:19,360 PATHWAY AND THE HYPOTHESIS WE 3015 02:25:19,360 --> 02:25:21,640 HAD GOING INTO THE MICE IS IT 3016 02:25:21,640 --> 02:25:23,920 THAT MICE ENGINEERED WITH THESE 3017 02:25:23,920 --> 02:25:26,320 ALS MUTATIONS SHOULD EXHIBIT 3018 02:25:26,320 --> 02:25:30,960 ELEVATED SPHINGOLIPID LEVELS AND 3019 02:25:30,960 --> 02:25:38,520 SIGNS OF NEURODEGENERATION. 3020 02:25:38,520 --> 02:25:40,040 WE MODELLED THAT AND I'LL 3021 02:25:40,040 --> 02:25:42,440 PRESENT UNPUBLISHED WORK FROM A 3022 02:25:42,440 --> 02:25:46,360 TERRIFIC GRADUATE STUDENT AND WE 3023 02:25:46,360 --> 02:25:49,880 WE HAVE DONE IS LOOK AT THE TWO 3024 02:25:49,880 --> 02:25:52,480 MUTATIONS THE A20S AND THE 3025 02:25:52,480 --> 02:25:54,760 DELETION OF THE AMINO ACIDS 40 3026 02:25:54,760 --> 02:25:55,680 AND 41. 3027 02:25:55,680 --> 02:25:58,920 A SIX-PAIR DELETION A 3028 02:25:58,920 --> 02:26:05,800 SINGLE-BASED MUTATION. 3029 02:26:05,800 --> 02:26:08,480 IF YOU LOOK IN THE THE ALIGNMENT 3030 02:26:08,480 --> 02:26:10,440 OF MAN AND MOUSE AND THIS 3031 02:26:10,440 --> 02:26:12,000 RESIDUE IS HIGHLY OBSERVED AS 3032 02:26:12,000 --> 02:26:15,240 ARE RESIDUES 40 AND 41. 3033 02:26:15,240 --> 02:26:21,280 AND SO WHAT WE DID WAS MADE AN 3034 02:26:21,280 --> 02:26:23,080 A20S MOUSE AND DELETION OF 40 3035 02:26:23,080 --> 02:26:29,920 AND 41. 3036 02:26:29,920 --> 02:26:34,160 SO JUST A KIND OF BRIEF OVERVIEW 3037 02:26:34,160 --> 02:26:36,360 BECAUSE THERE'S TOO MUCH DATA TO 3038 02:26:36,360 --> 02:26:37,440 SHARE IN THE SHORT TIME AND HAVE 3039 02:26:37,440 --> 02:26:38,680 A SUMMARY. 3040 02:26:38,680 --> 02:26:43,920 IN THE A20S LINE, WE FIND THAT 3041 02:26:43,920 --> 02:26:47,640 THE ANIMALS HAVE A NORMAL LIFE 3042 02:26:47,640 --> 02:26:50,240 SPAN AND THEY CAN BREED NORMALLY 3043 02:26:50,240 --> 02:27:00,760 AND BREED THEM TO HOMOZYGOTITY 3044 02:27:04,760 --> 02:27:06,960 AND WON'T HAVE A LOSS OF THE 3045 02:27:06,960 --> 02:27:08,440 MOTOR NEURON CELL BODIES. 3046 02:27:08,440 --> 02:27:10,240 THIS IS DIFFERENT THAN SOME 3047 02:27:10,240 --> 02:27:13,560 MOUSE MODELS OF ALS IN WHICH YOU 3048 02:27:13,560 --> 02:27:15,040 CAN REALLY OBSERVE A LOSS OF 3049 02:27:15,040 --> 02:27:16,720 MAYBE 50% OF THE MOTOR NEURONS 3050 02:27:16,720 --> 02:27:24,880 IN THE SPINAL CORD. 3051 02:27:24,880 --> 02:27:34,920 AND HOMEOZYGOTES HAVE THE MOST 3052 02:27:34,920 --> 02:27:38,560 AND SOME ANIMALS ARE VERY SMALL 3053 02:27:38,560 --> 02:27:49,120 WHEN BRED TO HOMO ZYGOCITY AND 3054 02:27:50,680 --> 02:27:53,760 THERE'S OBVIOUS MISDEVELOPMENT 3055 02:27:53,760 --> 02:27:54,920 OF THE NERVOUS SYSTEM AND 3056 02:27:54,920 --> 02:27:56,400 NEURODEGENERATION BUT THIS 3057 02:27:56,400 --> 02:27:57,240 CHARACTERIZATION IS ONGOING. 3058 02:27:57,240 --> 02:27:58,920 MOST OF WHAT I'LL SHOW IS DATA 3059 02:27:58,920 --> 02:28:01,000 THE LINE ON THE LEFT. 3060 02:28:01,000 --> 02:28:05,920 THIS IS JUST TO SHOW YOU THAT IN 3061 02:28:05,920 --> 02:28:08,520 BOTH FEMALE AND MALE MICE THE 3062 02:28:08,520 --> 02:28:09,720 HOMOZYGOUS AND HETEROZYGOUS 3063 02:28:09,720 --> 02:28:13,440 ANIMALS IN GREEN AND RED HAVE 3064 02:28:13,440 --> 02:28:15,520 SLIGHTLY LOWER BODY WEIGHT THAN 3065 02:28:15,520 --> 02:28:26,000 THEIR WILD TYPE COUNTERPARTS. 3066 02:28:30,440 --> 02:28:33,640 HERE ARE MEASUREMENTS AND WHAT 3067 02:28:33,640 --> 02:28:35,120 MY LAB DOES IS THEY'VE HARVESTED 3068 02:28:35,120 --> 02:28:40,240 DIFFERENT TISSUES FROM THE MOUSE 3069 02:28:40,240 --> 02:28:42,920 AND THEY CAN MEASURE THE 3070 02:28:42,920 --> 02:28:45,360 SPHINGOLIPIDS AND WE FOUND 3071 02:28:45,360 --> 02:28:48,840 THERE'S A DOSE-DEPENDENT 3072 02:28:48,840 --> 02:28:51,560 INCREASE IN VARIOUS 3073 02:28:51,560 --> 02:28:57,240 SPHINGOLIPIDS DOWN STREAM OF SPT 3074 02:28:57,240 --> 02:29:00,840 ACTIVITY THAT SHOWING IF MICE 3075 02:29:00,840 --> 02:29:05,960 CARRY ONE OR TWO COPIES OF THE 3076 02:29:05,960 --> 02:29:08,880 MUTATION IT'S IN LINE WITH WHAT 3077 02:29:08,880 --> 02:29:11,040 OTHER GROUPS HAVE FOUND IN THE 3078 02:29:11,040 --> 02:29:17,320 PATIENT COHORT. 3079 02:29:17,320 --> 02:29:21,800 INCREASE IN THE SPHINGOLIPIDS IN 3080 02:29:21,800 --> 02:29:23,600 THE CANONICAL PATHWAY. 3081 02:29:23,600 --> 02:29:29,480 AND WHAT ZOE HAS DONE IS 3082 02:29:29,480 --> 02:29:32,600 ANALYZED THE MICE AND WE CAN 3083 02:29:32,600 --> 02:29:36,000 FOLLOW THEM LONGITUDINALLY 3084 02:29:36,000 --> 02:29:37,640 OPPOSED TO WHERE WE HARVEST TISH 3085 02:29:37,640 --> 02:29:45,440 IT'S A TERM TERMINAL IF HE TURE 3086 02:29:45,440 --> 02:29:49,720 AND WHEN HERE I'M GOING TO SHOW 3087 02:29:49,720 --> 02:29:54,360 A MYELIN STAIN WHICH SHOWS THE 3088 02:29:54,360 --> 02:29:56,480 MYELIN ARE THE LIPID LAYERS THAT 3089 02:29:56,480 --> 02:29:59,760 ARE WRAPPING AROUND AXONS THAT 3090 02:29:59,760 --> 02:30:03,560 ALLOW FAST AXON CONDUCTION AND 3091 02:30:03,560 --> 02:30:05,880 AT 9 WEEKS OF AGE WE CAN TELL 3092 02:30:05,880 --> 02:30:09,920 THERE'S A SEVERE PHENOTYPE IN 3093 02:30:09,920 --> 02:30:11,960 THE HOMOZYGOUS ANIMALS AND 3094 02:30:11,960 --> 02:30:18,920 SOMETHING INTERMEDIATE IN THE 3095 02:30:18,920 --> 02:30:19,960 HOMO ZYGOTE. 3096 02:30:19,960 --> 02:30:22,920 THERE'S A LOSS OF INTENSITY OF 3097 02:30:22,920 --> 02:30:33,480 THE AXONS OVER ALL AND HERE YOU 3098 02:30:36,000 --> 02:30:39,840 SEE LIGHT GRAY AREAS AND WE SEE 3099 02:30:39,840 --> 02:30:43,600 OVER TIME THAT THE MYELIN LAYER 3100 02:30:43,600 --> 02:30:45,520 ITSELF SO TYPICALLY IN THESE 3101 02:30:45,520 --> 02:30:46,920 TISSUES FOR THOSE WHO AREN'T 3102 02:30:46,920 --> 02:30:48,960 USED TO SEEING THIS YOU SEE A 3103 02:30:48,960 --> 02:30:50,480 CROSS-SECTION THROUGH THE NERVE 3104 02:30:50,480 --> 02:30:52,600 AND THE SMALLER SAMPLES ARE 3105 02:30:52,600 --> 02:30:53,800 SMALLER DIAMETER AXONS AND THE 3106 02:30:53,800 --> 02:30:56,480 LARGER ONES THAT APPEAR WHITE 3107 02:30:56,480 --> 02:30:58,320 HAVE AYER RING OF MYELIN AROUND 3108 02:30:58,320 --> 02:31:03,600 IT AND THIS IS THE NORMAL 3109 02:31:03,600 --> 02:31:05,960 SITUATION AND ALLOWS LARGE 3110 02:31:05,960 --> 02:31:14,640 CALIBER AXONS. 3111 02:31:14,640 --> 02:31:17,040 THAT SEEMS TO BE PROGRESSION IN 3112 02:31:17,040 --> 02:31:22,520 THE OLDER ANIMALS AND THE LARGER 3113 02:31:22,520 --> 02:31:27,200 AXONS AND COMPARATIVELY THINNER 3114 02:31:27,200 --> 02:31:34,960 MYELIN AND A SIMILAR CALIBER 3115 02:31:34,960 --> 02:31:35,960 AXON. 3116 02:31:35,960 --> 02:31:38,600 ZOE WITH ANOTHER STUDENT IN THE 3117 02:31:38,600 --> 02:31:41,280 LAB MEASURED THE G RATIO 3118 02:31:41,280 --> 02:31:46,920 ESSENTIALLY A REFLECTION OF HOW 3119 02:31:46,920 --> 02:31:50,920 WELL MYELINATED THE AXONS ARE 3120 02:31:50,920 --> 02:31:54,040 AND THEY SHOW MORE POORLY 3121 02:31:54,040 --> 02:32:00,400 MILENATE -- MYELINATED THAN THE 3122 02:32:00,400 --> 02:32:01,320 SHOULD BE. 3123 02:32:01,320 --> 02:32:03,560 THIS IS A SUPER CLOSE UP OF SOME 3124 02:32:03,560 --> 02:32:06,560 OF THE AXONS SURROUNDED BY THEIR 3125 02:32:06,560 --> 02:32:07,240 MYELIN SHEATH. 3126 02:32:07,240 --> 02:32:11,400 IT'S PRODUCED BY A TYPE OF CELL 3127 02:32:11,400 --> 02:32:14,640 CALLED THE SCHWANN CELL AND HERE 3128 02:32:14,640 --> 02:32:21,080 YOU CAN SEE THESE LOOK FONORMAL 3129 02:32:21,080 --> 02:32:22,240 AND THE SHEATH AND THE 3130 02:32:22,240 --> 02:32:23,840 ASSOCIATED AXON. 3131 02:32:23,840 --> 02:32:28,320 HERE IN THE MUTANT YOU CAN SEE 3132 02:32:28,320 --> 02:32:32,640 HERE'S AN EXAMPLE OF PRETTY 3133 02:32:32,640 --> 02:32:34,040 THICK MYELIN SHEATH WITH ALMOST 3134 02:32:34,040 --> 02:32:40,840 NO MYELIN IN IT AND LOTS OF 3135 02:32:40,840 --> 02:32:44,880 ACCUMULATIONS IN THE SCHWANN 3136 02:32:44,880 --> 02:32:47,040 CELL ITSELF AND GAPS AND 3137 02:32:47,040 --> 02:32:49,360 EXCESSIVE WHAT LOOKS LIKE MYELIN 3138 02:32:49,360 --> 02:32:54,920 AND WE NEVER SEE THESE KINDS OF 3139 02:32:54,920 --> 02:32:58,680 IMAGES IN A WILD TYPE. 3140 02:32:58,680 --> 02:33:01,320 RARELY DO WE SEE IT IN THE 3141 02:33:01,320 --> 02:33:03,880 HETEROZYGOUS ANIMALS BUT WE 3142 02:33:03,880 --> 02:33:05,960 KNOWS THERE'S SOME OCCURRENCES. 3143 02:33:05,960 --> 02:33:08,960 SO IT PRODUCES PATHOLOGY IN THE 3144 02:33:08,960 --> 02:33:11,320 SCHWANN CELL AND HERE'S NEITHER 3145 02:33:11,320 --> 02:33:13,800 EXAMPLE OF THE GAPS THAT WE SEE 3146 02:33:13,800 --> 02:33:16,360 IN THE SCHWANN CELL AND 3147 02:33:16,360 --> 02:33:17,800 TYPICALLY WE ONLY HAVE ONE 3148 02:33:17,800 --> 02:33:20,600 MYELIN SHEATH AND ONE AXON 3149 02:33:20,600 --> 02:33:23,280 INSIDE THE SCHWANN CELL BUT HERE 3150 02:33:23,280 --> 02:33:26,920 YOU CAN SEE MULTIPLE SHEATHS AND 3151 02:33:26,920 --> 02:33:29,640 IT LOOKS LIKE A SIGN OF NERVES 3152 02:33:29,640 --> 02:33:31,040 TRYING TO REGENERATE. 3153 02:33:31,040 --> 02:33:38,320 YOU CAN SEE SOME SPROUTING HERE. 3154 02:33:38,320 --> 02:33:41,960 ALWAYS ON THE LEFT THE WILD TYPE 3155 02:33:41,960 --> 02:33:45,960 HEALTHY CONTROL AND ON THE RIGHT 3156 02:33:45,960 --> 02:33:50,960 THE HOMEOZYGOUS MUTANT AND THIS 3157 02:33:50,960 --> 02:33:54,960 IS MORE APPROPRIATELY MYELI 3158 02:33:54,960 --> 02:33:56,800 MYELINATED AND MATERIALS INSIDE 3159 02:33:56,800 --> 02:34:05,960 THE AXON AND THIS IS SHOWING IN 3160 02:34:05,960 --> 02:34:09,080 THE AXONS AND NEURONS THERE'S 3161 02:34:09,080 --> 02:34:13,040 DEFICITS NORMALLY YOU DON'T HAVE 3162 02:34:13,040 --> 02:34:16,000 A TRAFFIC JAM SUCH AS THESE 3163 02:34:16,000 --> 02:34:26,480 CELLS TRAPPED IN ONE PLACE. 3164 02:34:27,480 --> 02:34:29,800 SO ONE THING ZOE HAS ATTEMPTED 3165 02:34:29,800 --> 02:34:31,600 TO DO NOW AND THAT'S A SNAPSHOT 3166 02:34:31,600 --> 02:34:35,840 AND WE ATTEMPTED TO FOLLOW THE 3167 02:34:35,840 --> 02:34:39,360 ANIMALS OVER TIME USING AN 3168 02:34:39,360 --> 02:34:42,240 ELEC 3169 02:34:42,240 --> 02:34:43,480 ELECTROPHYSIOLOGICAL READ OUT 3170 02:34:43,480 --> 02:34:48,800 AND THE ANIMALS ARE ANESTHETIZED 3171 02:34:48,800 --> 02:34:52,000 AND ELECTRODES ARE PLACED ON THE 3172 02:34:52,000 --> 02:34:56,280 ANIMAL TO RECORD ACTIVITY THAT'S 3173 02:34:56,280 --> 02:34:58,560 ELICITED BY ELECTRODES THAT 3174 02:34:58,560 --> 02:35:01,080 STIMULATE THE NERVE AND ACTIVITY 3175 02:35:01,080 --> 02:35:01,840 IS RECORDED IN THE MUSCLE 3176 02:35:01,840 --> 02:35:03,160 RECEIVING INPUT FROM THE NERVE. 3177 02:35:03,160 --> 02:35:09,000 WHAT YOU MIGHT SEE IN A HEALTHY 3178 02:35:09,000 --> 02:35:09,960 ANIMAL IS A COMPOUND POTENTIAL 3179 02:35:09,960 --> 02:35:12,040 THAT LOOKS LIKE THIS AND I'M 3180 02:35:12,040 --> 02:35:14,160 GOING TO SHOW YOU IN THE NEXT 3181 02:35:14,160 --> 02:35:15,880 GRAPH THE BLUE MEASUREMENT AND 3182 02:35:15,880 --> 02:35:19,280 THE TOTAL AMPLITUDE. 3183 02:35:19,280 --> 02:35:22,000 THERE'S AN ARTIFACT STIMULUS AND 3184 02:35:22,000 --> 02:35:23,720 RESPONSE FROM THE MUSCLE. 3185 02:35:23,720 --> 02:35:25,920 LIKE A RESPONSE FROM MANY AXONS 3186 02:35:25,920 --> 02:35:27,360 FEEDING INTO THE MUSCLE AND WHAT 3187 02:35:27,360 --> 02:35:33,360 YOU MIGHT SEE IN A MOUSE MODEL 3188 02:35:33,360 --> 02:35:37,160 OF ALS IS A REDUCTION IN THE 3189 02:35:37,160 --> 02:35:37,560 AMPLITUDE. 3190 02:35:37,560 --> 02:35:41,440 AND IT CAN REFLECT MANY 3191 02:35:41,440 --> 02:35:42,760 DIFFERENT THINGS THE READOUT 3192 02:35:42,760 --> 02:35:45,800 TELLS YOU FOR EXAMPLE IT'S 3193 02:35:45,800 --> 02:35:47,440 REDUCED BUT DOESN'T TELL YOU 3194 02:35:47,440 --> 02:35:49,760 IT'S BECAUSE THERE'S LESS 3195 02:35:49,760 --> 02:35:51,200 NEURONS JUST SURVIVING OR THERE 3196 02:35:51,200 --> 02:35:53,160 ARE SAME NUMBER OF NEURONS BUT 3197 02:35:53,160 --> 02:35:55,360 MAYBE NOT AS WELL CONNECTED OR 3198 02:35:55,360 --> 02:35:58,920 THEY'RE NOT ABLE TO SIGNAL 3199 02:35:58,920 --> 02:35:59,960 PROPERLY. 3200 02:35:59,960 --> 02:36:04,200 THIS IS THE RESULT. 3201 02:36:04,200 --> 02:36:09,360 ZOE DID THE STUDY BLINDED AND 3202 02:36:09,360 --> 02:36:14,920 HAD WILD TYPE AND HETEROZYGOUS 3203 02:36:14,920 --> 02:36:16,360 ANIMALS AND SOME WERE STABLE AND 3204 02:36:16,360 --> 02:36:20,960 THIS IS RECORDED FROM A MUSCLE 3205 02:36:20,960 --> 02:36:23,960 CALLED THE TIBIALIS ANTERIOR AND 3206 02:36:23,960 --> 02:36:26,320 YOU CAN SEE IN GREEN THE 3207 02:36:26,320 --> 02:36:28,000 HOMOZYGOUS ANIMALS WHERE THEY 3208 02:36:28,000 --> 02:36:31,120 START OFF LOOKING RELATIVELY 3209 02:36:31,120 --> 02:36:35,560 NORMAL, THEY DROP OFF TO ABOUT 3210 02:36:35,560 --> 02:36:39,760 BETWEEN 30% AND 50% OF THE CMAP 3211 02:36:39,760 --> 02:36:43,600 AMPLITUDE YOU CAN CONTROL AND 3212 02:36:43,600 --> 02:36:46,760 THIS SEEMS TO PLATEAU WHERE YOU 3213 02:36:46,760 --> 02:36:49,880 GET CELL DEATH AND THIS WOULD 3214 02:36:49,880 --> 02:36:52,280 PLUMMET EVEN FURTHER AND WOULD 3215 02:36:52,280 --> 02:36:54,480 KIND OF BOTTOM OUT BETWEEN 10 3216 02:36:54,480 --> 02:36:57,160 AND 20 MINUTE VOLTS. 3217 02:36:57,160 --> 02:36:58,840 THIS IS SOMETHING INTERMEDIATE 3218 02:36:58,840 --> 02:37:02,400 AND THE TYPES OF MODELS WE HAVE 3219 02:37:02,400 --> 02:37:04,200 LOOKED AT IN THE LAB BUT 3220 02:37:04,200 --> 02:37:06,000 NONETHELESS A SIGNIFICANT AFFECT 3221 02:37:06,000 --> 02:37:09,680 AND CORRELATES WITH THE 3222 02:37:09,680 --> 02:37:11,760 HISTOPATHOLOGY WE'VE BEEN SEEING 3223 02:37:11,760 --> 02:37:12,080 IN THE NERVE. 3224 02:37:12,080 --> 02:37:14,920 I WANT TO SHOW YOU ONE PIECE OF 3225 02:37:14,920 --> 02:37:17,720 DATA WE'RE QUITE EXCITED ABOUT. 3226 02:37:17,720 --> 02:37:18,920 WE'VE BEEN ABLE TO SERVE FROM 3227 02:37:18,920 --> 02:37:21,680 THE SERUM OF THESE ANIMALS, WE 3228 02:37:21,680 --> 02:37:22,800 CAN COLLECT BLOOD FROM THE 3229 02:37:22,800 --> 02:37:23,800 ANIMALS AND SHOWED YOU FROM THE 3230 02:37:23,800 --> 02:37:27,880 BLOOD WE CAN DETECT THE LIPIDS 3231 02:37:27,880 --> 02:37:33,720 AND THE SPHINGOLIPIDS AND HERE 3232 02:37:33,720 --> 02:37:41,480 WE CAN DETECT NEUROFILAMENT 3233 02:37:41,480 --> 02:37:43,040 LIGHT AND IT'S A BIOMARKER OF 3234 02:37:43,040 --> 02:37:46,960 NEURODEGENERATION AND A 3235 02:37:46,960 --> 02:37:48,160 CYTOEXCY 3236 02:37:48,160 --> 02:37:50,920 CYTOSKELETAL PROTEIN EXPRESSED 3237 02:37:50,920 --> 02:37:54,920 IN NEURONS WITH LONG AXONS SUCH 3238 02:37:54,920 --> 02:37:58,920 AS MOTOR AND SENSORY NEURONS AND 3239 02:37:58,920 --> 02:38:01,840 DETECT HIGHER THAN NORMAL LEVELS 3240 02:38:01,840 --> 02:38:04,440 AND THERE'S A MARKER OF 3241 02:38:04,440 --> 02:38:04,840 NEURODEGENERATION. 3242 02:38:04,840 --> 02:38:06,000 THIS IS A DIFFERENT AGE OF THE 3243 02:38:06,000 --> 02:38:08,720 ANIMAL OVER TIME. 3244 02:38:08,720 --> 02:38:10,120 YOU CAN SEE ALREADY AT A YOUNG 3245 02:38:10,120 --> 02:38:14,200 AGE WE'RE DETECTING HIGHER THAN 3246 02:38:14,200 --> 02:38:16,560 NORMAL LEVELS OF NEUROFILAMENT 3247 02:38:16,560 --> 02:38:24,000 LIGHT. 3248 02:38:24,000 --> 02:38:29,240 HERE YOU'RE SEEING THE LEVELS OF 3249 02:38:29,240 --> 02:38:32,200 NEUROFILAMENT LIGHT AND THE HOMO 3250 02:38:32,200 --> 02:38:32,840 ZYGOTES IS HIGHER AND INCREASES 3251 02:38:32,840 --> 02:38:42,920 WITH AGE. 3252 02:38:42,920 --> 02:38:45,760 AND IN A PREVENTION TREATMENT 3253 02:38:45,760 --> 02:38:49,840 STUDY YOU COULD MEASURE LEVELS 3254 02:38:49,840 --> 02:38:50,920 BEFORE AND AFTER PERIOD OF SOME 3255 02:38:50,920 --> 02:38:52,480 KIND OF TREATMENT WE MIGHT WANT 3256 02:38:52,480 --> 02:38:56,640 TO TEST IN THE ANIMALS TO REDUCE 3257 02:38:56,640 --> 02:39:00,680 THE LEVELS OF SPHINGOLIPIDS. 3258 02:39:00,680 --> 02:39:06,040 I JUST WANT TO SHARE TWO SLIDES 3259 02:39:06,040 --> 02:39:09,840 ON THE SECOND MOUSE MODEL WE'VE 3260 02:39:09,840 --> 02:39:11,960 BEEN DEVELOPING BECAUSE IT'S 3261 02:39:11,960 --> 02:39:14,640 ALWAYS USEFUL TO IF YOU'RE 3262 02:39:14,640 --> 02:39:17,280 MODELLING A DISEASE IN MOUSE AND 3263 02:39:17,280 --> 02:39:21,720 YOU SEE SIMILAR THINGS WITH A 3264 02:39:21,720 --> 02:39:24,000 SERIES CAN INCREASE THE POWER 3265 02:39:24,000 --> 02:39:24,920 FOR YOUR ANALYSIS AND 3266 02:39:24,920 --> 02:39:25,960 OBSERVATION AND UNDERSTANDING 3267 02:39:25,960 --> 02:39:26,920 FOR WHAT'S HAPPENING IN THE 3268 02:39:26,920 --> 02:39:33,360 SYNDROME. 3269 02:39:33,360 --> 02:39:38,920 WITH THIS DELETION OF THESE 3270 02:39:38,920 --> 02:39:42,920 AMINO ACIDS 40, 41 ARE SMALLER 3271 02:39:42,920 --> 02:39:46,520 AND A TYPICAL ANIMAL MOUSE AT 4 3272 02:39:46,520 --> 02:39:49,280 TO 5 WEEKS ARE ABOUT 15 GRAMS AN 3273 02:39:49,280 --> 02:39:50,480 THESE ARE CLOSER TO 5. 3274 02:39:50,480 --> 02:39:51,160 THEY'RE TEENY. 3275 02:39:51,160 --> 02:39:53,120 IN FACT THEY ONLY SURVIVE TO 3276 02:39:53,120 --> 02:39:54,360 ABOUT 5 WEEKS OLD. 3277 02:39:54,360 --> 02:40:00,360 IT'S BEEN TRICKIER TO STUDY 3278 02:40:00,360 --> 02:40:02,240 BECAUSE WE HAVE THIS RELATIVELY 3279 02:40:02,240 --> 02:40:06,480 SHORT WINDOW IN WHICH TO DETECT 3280 02:40:06,480 --> 02:40:09,560 AND COLLECT THESE ANIMALS. 3281 02:40:09,560 --> 02:40:10,200 WE'RE CURRENTLY INVESTIGATING 3282 02:40:10,200 --> 02:40:14,920 THE PATHOLOGY AND STILL 3283 02:40:14,920 --> 02:40:24,440 INVESTIGATING WITH PERHAPS THE 3284 02:40:24,440 --> 02:40:29,360 HETEROZYGOTE AND YOU SEE IN THE 3285 02:40:29,360 --> 02:40:34,840 HOMO ZYGOTE IT LOOKS QUITE 3286 02:40:34,840 --> 02:40:38,920 DIFFERENT FROM THE WILD TYPE AND 3287 02:40:38,920 --> 02:40:41,240 THE HETEROZYGOUS IS IN BETWEEN. 3288 02:40:41,240 --> 02:40:45,520 THIS IS 4 WEEKS OLD AND DURING 3289 02:40:45,520 --> 02:40:49,400 THE PERIOD STILL POST-NATALLY OR 3290 02:40:49,400 --> 02:40:50,920 LATER DEVELOPMENT YOU CAN SEE 3291 02:40:50,920 --> 02:40:54,520 THE MYELIN HAS NOT FULLY 3292 02:40:54,520 --> 02:40:58,920 DEVELOPED HERE OR NOT PROPERLY 3293 02:40:58,920 --> 02:41:06,960 DEVELOPED IN THE HETERODIE -- 3294 02:41:06,960 --> 02:41:08,560 HETERODIE GOUS ANIMALS AND YOU 3295 02:41:08,560 --> 02:41:11,080 CAN SEE THIS IS ONLY PARTIAL AND 3296 02:41:11,080 --> 02:41:13,240 YOU CAN SEE YOU MAY BE ABLE TO 3297 02:41:13,240 --> 02:41:15,640 RECOGNIZE THE PATHOLOGIES I 3298 02:41:15,640 --> 02:41:21,120 SHOWED IN THE SCHWANN CELLS IN 3299 02:41:21,120 --> 02:41:28,320 THE LIGHT GRAY. 3300 02:41:28,320 --> 02:41:30,320 WE'RE SEEING A 3301 02:41:30,320 --> 02:41:32,320 NEURODEVELOPMENTAL ISSUE 3302 02:41:32,320 --> 02:41:37,320 ASSOCIATED WITH THIS MUTATION AS 3303 02:41:37,320 --> 02:41:40,040 WELL PROGRESSIVE DEGENERATION 3304 02:41:40,040 --> 02:41:41,600 AND HAVE YET TO UNPACK WHY 3305 02:41:41,600 --> 02:41:42,360 THEY'RE SO DIFFERENT BETWEEN THE 3306 02:41:42,360 --> 02:41:48,000 TWO ANIMAL BUT DO SEE ELEVATED 3307 02:41:48,000 --> 02:41:58,280 SPHINGOLIPIDS IN THE OTHERS AND 3308 02:41:58,280 --> 02:41:59,880 WE HAVE A MOUSE FOR COMPARISON 3309 02:41:59,880 --> 02:42:03,640 AT THE YOUNG AGE OF 4 TO 5 WEEKS 3310 02:42:03,640 --> 02:42:06,320 OLD WHERE WE HAVE A SMALL 3311 02:42:06,320 --> 02:42:09,800 ELEVATION IN THE LINE BUT IT'S 3312 02:42:09,800 --> 02:42:16,480 HIGH IN THE DEL 40-41 HOMO 3313 02:42:16,480 --> 02:42:18,920 ZYGOTES AT THIS TIME AND THE 3314 02:42:18,920 --> 02:42:20,440 REASON WE WERE INTERESTED IN 3315 02:42:20,440 --> 02:42:24,760 THIS MUTATION IS IT'S A SIX-PAIR 3316 02:42:24,760 --> 02:42:26,920 DELETION. 3317 02:42:26,920 --> 02:42:29,520 THAT'S SOMETHING ONE CAN WORK 3318 02:42:29,520 --> 02:42:33,240 WITH TO TRY TO SILENCE A MUTATED 3319 02:42:33,240 --> 02:42:33,480 ALLELE. 3320 02:42:33,480 --> 02:42:36,000 I'VE BEEN SHOWING ALL THE DATA 3321 02:42:36,000 --> 02:42:38,800 SHOWING THE HOMOZYGOUS MICE HAVE 3322 02:42:38,800 --> 02:42:40,480 A SIGNIFICANT PHENOTYPE BUT 3323 02:42:40,480 --> 02:42:41,760 PATIENTS ARE CARRYING JUST ONE 3324 02:42:41,760 --> 02:42:44,840 OF THESE ALLELES AND THIS IS 3325 02:42:44,840 --> 02:42:46,360 TYPICAL IN THE WORLD OF MOUSE 3326 02:42:46,360 --> 02:42:46,600 MODELLING. 3327 02:42:46,600 --> 02:42:48,520 SOMETIMES YOU NEED MORE COPIES 3328 02:42:48,520 --> 02:42:54,000 OF THE MUTATED ALLELE TO SEE A 3329 02:42:54,000 --> 02:42:55,800 PHENOTYPE. 3330 02:42:55,800 --> 02:43:01,880 IN PEOPLE THEY CARRY ONE AND 3331 02:43:01,880 --> 02:43:08,320 THAT WOULD BE SUFFICIENT TO 3332 02:43:08,320 --> 02:43:13,880 CAUSE THAT SILENCE IT COULD 3333 02:43:13,880 --> 02:43:17,960 CAUSE THE ALLELE. 3334 02:43:17,960 --> 02:43:20,080 MUTATIONS ASSOCIATED WITH 3335 02:43:20,080 --> 02:43:22,160 JUVENILE ALS PRODUCE 3336 02:43:22,160 --> 02:43:23,960 NEURODEGENERATION PHENOTYPES IN 3337 02:43:23,960 --> 02:43:25,200 GENE-EDITED MICE. 3338 02:43:25,200 --> 02:43:26,920 WE HAVE ONGOING CHARACTERIZATION 3339 02:43:26,920 --> 02:43:30,840 GOING ON AND WE'RE PLANNING A 3340 02:43:30,840 --> 02:43:33,800 PREVENTION STUDY USING 3341 02:43:33,800 --> 02:43:36,000 INHIBITERS OF SPTLC1 IN THE 3342 02:43:36,000 --> 02:43:36,560 MOUSE MODEL I'VE DESCRIBED 3343 02:43:36,560 --> 02:43:41,760 TODAY. 3344 02:43:41,760 --> 02:43:45,560 WE HOPE TO DISCOVER A PHENOTYPE 3345 02:43:45,560 --> 02:43:50,680 IN THE MICE FOR FUTURE 3346 02:43:50,680 --> 02:43:53,600 TRANSLATIONAL STUDIES AND I WANT 3347 02:43:53,600 --> 02:43:54,960 TO HIGHLIGHT THIS RESEARCH CAN 3348 02:43:54,960 --> 02:43:58,800 HAVE RELEVANCE FOR POTENTIALLY 3349 02:43:58,800 --> 02:44:01,560 ALS PATIENTS AT LARGE OR IN THE 3350 02:44:01,560 --> 02:44:02,560 SPORADIC POPULATION FOR ALS 3351 02:44:02,560 --> 02:44:04,640 BECAUSE MUTATIONS HAVE BEEN 3352 02:44:04,640 --> 02:44:08,080 REPORTED IN SPORADIC ALS 3353 02:44:08,080 --> 02:44:09,840 PATIENTS THAT WOULD HAVE A MORE 3354 02:44:09,840 --> 02:44:10,320 ALS PROFILE. 3355 02:44:10,320 --> 02:44:18,920 THERE'S A POSSIBILITY OF 3356 02:44:18,920 --> 02:44:22,800 SPORADIC ALS AS WELL AS 3357 02:44:22,800 --> 02:44:26,920 POTENTIALLY USING DISEASE 3358 02:44:26,920 --> 02:44:29,240 SPHINGOLIPIDS AND I WANT TO 3359 02:44:29,240 --> 02:44:32,560 THANK PEOPLE AND THE GRADUATE 3360 02:44:32,560 --> 02:44:33,840 STUDENT IN MY LAB WHO 3361 02:44:33,840 --> 02:44:35,440 SPEARHEADED THIS WORK AND IT'S 3362 02:44:35,440 --> 02:44:38,440 BEEN A FANTASTIC COLLABORATION 3363 02:44:38,440 --> 02:44:48,960 WITH A LAB AT HSUHS AND THANK 3364 02:44:53,200 --> 02:44:53,360 YOU. 3365 02:44:53,360 --> 02:44:59,200 I'M HAPPY TO TAKE QUESTIONS. 3366 02:44:59,200 --> 02:45:00,920 WE'RE HOPING NOW FOR QUESTIONS 3367 02:45:00,920 --> 02:45:02,920 AND TURN OFF THE SLIDE TO SEE 3368 02:45:02,920 --> 02:45:10,240 EVERYONE. 3369 02:45:10,240 --> 02:45:11,600 >> THANK YOU FOR AN INTERESTING 3370 02:45:11,600 --> 02:45:11,920 PRESENTATION. 3371 02:45:11,920 --> 02:45:13,640 SINCE YOU FOCUSSED ON SCIENCE, I 3372 02:45:13,640 --> 02:45:19,080 HAVE SOME SCIENCE QUESTIONS FOR 3373 02:45:19,080 --> 02:45:19,240 YOU. 3374 02:45:19,240 --> 02:45:25,320 ARE YOU SUGGESTING THE SPCLTC1 3375 02:45:25,320 --> 02:45:30,680 GENE IS INTERRUPTING MYELIN 3376 02:45:30,680 --> 02:45:30,960 PRODUCTION. 3377 02:45:30,960 --> 02:45:35,680 IS THIS A FORM THAT MAY START 3378 02:45:35,680 --> 02:45:37,680 START WITH THE GLIAL FORM AND 3379 02:45:37,680 --> 02:45:41,360 WITH THE PATHOLOGY SHOULD 3380 02:45:41,360 --> 02:45:42,720 PROGRESSIVELY, IT SEEMS MORE 3381 02:45:42,720 --> 02:45:45,520 LIKELY IF YOU LOOK AT HIGH-LIMB 3382 02:45:45,520 --> 02:45:47,880 MOTOR NEURONS YOU WOULD START TO 3383 02:45:47,880 --> 02:45:49,880 SEE LOSSES. 3384 02:45:49,880 --> 02:45:51,840 HAVE YOU LOOKED AT THAT MOTOR 3385 02:45:51,840 --> 02:45:53,960 POPULATION AT LATE STAGES TO SEE 3386 02:45:53,960 --> 02:45:55,360 IF INDEED THEY DO DIE? 3387 02:45:55,360 --> 02:45:59,040 >> THESE ARE BOTH REALLY GREAT 3388 02:45:59,040 --> 02:45:59,320 QUESTIONS. 3389 02:45:59,320 --> 02:46:03,560 THANK YOU. 3390 02:46:03,560 --> 02:46:08,800 FOR THE FIRST QUESTION, WHETHER 3391 02:46:08,800 --> 02:46:12,280 WE THINK IT ALS CAN BE CAUSED BY 3392 02:46:12,280 --> 02:46:13,520 THE CELLS THERE'S EVIDENCE THAT 3393 02:46:13,520 --> 02:46:14,640 IT'S A LITTLE TRICKY. 3394 02:46:14,640 --> 02:46:15,960 I DON'T THINK WE CAN CONCLUDE 3395 02:46:15,960 --> 02:46:18,280 WITH THE ANIMAL MODEL WE MADE TO 3396 02:46:18,280 --> 02:46:20,760 REALLY SHOW IT WOULD BE 3397 02:46:20,760 --> 02:46:21,720 INTERESTING TO MAKE A 3398 02:46:21,720 --> 02:46:24,040 CONDITIONAL MODEL FOR EXAMPLE 3399 02:46:24,040 --> 02:46:25,960 JUST EXPRESS IT IN THE 3400 02:46:25,960 --> 02:46:27,840 MYELINATING CELLS BUT BASED ON 3401 02:46:27,840 --> 02:46:33,920 WHAT WE'VE SEEN, WE SEE EVIDENT 3402 02:46:33,920 --> 02:46:35,800 PATHOLOGY IN THE SCHWANN CELLS 3403 02:46:35,800 --> 02:46:38,280 AND I'D GUESS IT'S SIMILAR IN 3404 02:46:38,280 --> 02:46:40,840 THE CENTRAL NERVOUS SYSTEM BUT 3405 02:46:40,840 --> 02:46:42,760 WE ALSO SEE -- I FEEL LIKE THE 3406 02:46:42,760 --> 02:46:44,600 TYPES OF PATHOLOGY WE'RE SEEING 3407 02:46:44,600 --> 02:46:48,000 IN THE NEURONS WE ALSO SEE 3408 02:46:48,000 --> 02:46:49,840 SOMETHING THERE. 3409 02:46:49,840 --> 02:46:50,920 SPT PROBABLY HAS IMPORTANT ROLES 3410 02:46:50,920 --> 02:46:52,600 IN NEURONS AS WELL SO IT'S 3411 02:46:52,600 --> 02:46:54,400 DIFFICULT TO DISSECT THE TWO 3412 02:46:54,400 --> 02:46:56,560 EFFECTS BUT DEFINITELY THE MOST 3413 02:46:56,560 --> 02:46:58,680 STRIKING WHEN YOU JUST LOOK AT 3414 02:46:58,680 --> 02:47:01,040 THE IMAGES THE SCHWANN CELLS 3415 02:47:01,040 --> 02:47:09,640 LOOK SO INTRIGUINGLY DIFFERENT. 3416 02:47:09,640 --> 02:47:11,560 IT IS POSSIBLE MANY AXONAL 3417 02:47:11,560 --> 02:47:14,520 PATHOLOGIES CAN JUST BE A 3418 02:47:14,520 --> 02:47:16,400 CONSEQUENCE OF PROBLEMS WITH 3419 02:47:16,400 --> 02:47:20,440 MYELINATION FOR SURE SO I'M NOT 3420 02:47:20,440 --> 02:47:22,560 DISCOUNTING THE PATHOLOGY IN 3421 02:47:22,560 --> 02:47:24,240 NEURONS IS SECONDARY TO THE 3422 02:47:24,240 --> 02:47:25,720 MYELINATING CELL. 3423 02:47:25,720 --> 02:47:31,560 FOR THE SECOND QUESTION, HAVE WE 3424 02:47:31,560 --> 02:47:34,840 LOOKED IN HIGH LIMB MOTOR 3425 02:47:34,840 --> 02:47:36,760 NEURONS IN LATER STAGES? 3426 02:47:36,760 --> 02:47:37,680 I DIDN'T SHOW COUNTS TODAY 3427 02:47:37,680 --> 02:47:38,840 BECAUSE WE'RE STILL IN THE 3428 02:47:38,840 --> 02:47:40,400 PROCESS OF DOING THAT. 3429 02:47:40,400 --> 02:47:41,800 THERE'S NOT A HUGE OVERT LOSS 3430 02:47:41,800 --> 02:47:42,840 LIKE I MENTIONED. 3431 02:47:42,840 --> 02:47:44,640 IT'S NOT LIKE WE CAN LOOK AT ONE 3432 02:47:44,640 --> 02:47:46,200 IMAGE AND KNOW THE ANSWER. 3433 02:47:46,200 --> 02:47:51,160 WE HAVE TO DO QUITE DETAILED 3434 02:47:51,160 --> 02:47:54,040 QUANTIFICATION BUT WE DO SEE 3435 02:47:54,040 --> 02:47:57,120 LATER SIGNS OF MOTOR NEURON 3436 02:47:57,120 --> 02:47:57,440 DEGENERATION. 3437 02:47:57,440 --> 02:47:58,280 IT'S NOT MASSIVE. 3438 02:47:58,280 --> 02:48:01,440 I THINK I CAN SAY THAT WITH SOME 3439 02:48:01,440 --> 02:48:03,280 CONFIDENCE BECAUSE THE ANIMALS 3440 02:48:03,280 --> 02:48:06,040 LIVE NORMAL LIFE SPANS AND DON'T 3441 02:48:06,040 --> 02:48:07,880 DEVELOP SEVERE MOTOR SYMPTOMS 3442 02:48:07,880 --> 02:48:10,120 BUT I THINK THERE MIGHT BE SOME 3443 02:48:10,120 --> 02:48:12,520 MILD LOSS. 3444 02:48:12,520 --> 02:48:14,840 I THINK IN THE SECOND MODEL THE 3445 02:48:14,840 --> 02:48:16,440 MORE RAPID MODEL WE HAVEN'T 3446 02:48:16,440 --> 02:48:17,400 LOOKED AT THAT AT ALL AND IT 3447 02:48:17,400 --> 02:48:24,080 WILL BE INTERESTING TO DO SO. 3448 02:48:24,080 --> 02:48:25,680 >> IN THE INTEREST OF TIME I 3449 02:48:25,680 --> 02:48:30,520 THINK WE'RE GOING MOVE ON. 3450 02:48:30,520 --> 02:48:33,320 THANK YOU VERY MUCH, CLAIRE AND 3451 02:48:33,320 --> 02:48:34,040 THOSE FAMILIAR WITH OUR ADVISORY 3452 02:48:34,040 --> 02:48:39,000 COUNCIL MEETINGS YOU KNOW WE 3453 02:48:39,000 --> 02:48:41,720 REGULARLY HAVE A SEGMENT CALLED 3454 02:48:41,720 --> 02:48:42,720 VOICE OF THE PARTICIPANT AND 3455 02:48:42,720 --> 02:48:45,760 HEAR FROM THOSE WHO HAVE 3456 02:48:45,760 --> 02:48:46,320 PERSONAL EXPERIENCES FOR 3457 02:48:46,320 --> 02:48:47,960 RESEARCH THAT NICHD FUNDS AND WE 3458 02:48:47,960 --> 02:48:50,360 LOVE OUR MICE BUT WE WANT TO 3459 02:48:50,360 --> 02:48:51,120 HEAR HOW THE CONDITIONS AFFECT 3460 02:48:51,120 --> 02:48:56,880 HUMANS AS WELL. 3461 02:48:56,880 --> 02:49:01,080 WE ARE VERY FORTUNATE TO HAVE 3462 02:49:01,080 --> 02:49:06,840 MS. RIVKA HERZFELD JOIN AND I 3463 02:49:06,840 --> 02:49:10,040 SEE SHE'S JOINED ON AND WILL BE 3464 02:49:10,040 --> 02:49:12,680 JOINED BY DR. PAYAM MOHASSEL WHO 3465 02:49:12,680 --> 02:49:14,920 HAS NOW MOVED TO THE JOHNS 3466 02:49:14,920 --> 02:49:17,920 HOPKINS UNIVERSITY SCHOOL OF 3467 02:49:17,920 --> 02:49:18,880 MEDICINE. 3468 02:49:18,880 --> 02:49:20,520 DR. MOHASSEL IS A PHYSICIAN 3469 02:49:20,520 --> 02:49:22,320 SCIENTIST WITH A RESEARCH FOCUS 3470 02:49:22,320 --> 02:49:26,960 ON TRANSLATIONAL STUDIES IN 3471 02:49:26,960 --> 02:49:31,600 GENETIC NEUROMUSCULAR DISORDERS 3472 02:49:31,600 --> 02:49:34,040 AND HE WAS RECENTLY RECRUITED TO 3473 02:49:34,040 --> 02:49:34,920 JOHNS HOPKINS UNIVERSITY SCHOOL 3474 02:49:34,920 --> 02:49:38,920 OF MEDICINE AS AN ASSOCIATE 3475 02:49:38,920 --> 02:49:44,920 PROFESSOR OF NEUROLOGY AND LOOKS 3476 02:49:44,920 --> 02:49:48,040 AT RARE MUSCULODISEASES AND 3477 02:49:48,040 --> 02:49:50,760 PROOF OF CONCEPT STUDIES AND 3478 02:49:50,760 --> 02:49:54,720 EARLY PHASE CLINICAL TRIALS. 3479 02:49:54,720 --> 02:49:58,920 WELCOME, DR. MOHASSEL AND MS. 3480 02:49:58,920 --> 02:50:02,160 HEARST -- HERZFELD. 3481 02:50:02,160 --> 02:50:05,200 >> THANK YOU FOR THE OPPORTUNITY 3482 02:50:05,200 --> 02:50:07,000 TO TALK IN THE SPECIAL SESSION, 3483 02:50:07,000 --> 02:50:12,040 VOICE OF THE PARTICIPANT. 3484 02:50:12,040 --> 02:50:16,520 I THINK HOPEFULLY RIVKA WILL BE 3485 02:50:16,520 --> 02:50:17,640 ABLE TO JOIN AND A LOT OF THE 3486 02:50:17,640 --> 02:50:21,120 SCIENCE AND BACKGROUND I'M NOT 3487 02:50:21,120 --> 02:50:25,560 GOING SPEAK MUCH ABOUT THAT PART 3488 02:50:25,560 --> 02:50:28,640 AND START BY INTRODUCING RIVKA. 3489 02:50:28,640 --> 02:50:32,040 SO IT'S MY PLEASURE TO INTRODUCE 3490 02:50:32,040 --> 02:50:32,600 RIVKA. 3491 02:50:32,600 --> 02:50:33,800 SO YOU ALL KNOW A LITTLE BIT 3492 02:50:33,800 --> 02:50:36,040 ABOUT HER, SHE HAS A MASTER'S 3493 02:50:36,040 --> 02:50:39,760 DEGREE IN BIBLE STUDIES AND A 3494 02:50:39,760 --> 02:50:41,800 TECHNICAL WRITER BACK IN NEW 3495 02:50:41,800 --> 02:50:43,200 JERSEY AND SHE'S BEEN WORKING 3496 02:50:43,200 --> 02:50:44,760 HERE ABOUT THREE YEARS AND 3497 02:50:44,760 --> 02:50:51,520 BEFORE THAT WAS A TEACHER. 3498 02:50:51,520 --> 02:50:54,280 SHE IS VERY CURIOUS AND VERY 3499 02:50:54,280 --> 02:50:58,920 MOTIVATED TO UNDERSTAND WHAT 3500 02:50:58,920 --> 02:51:01,120 CAUSES WEAKNESS IN HER AND HER 3501 02:51:01,120 --> 02:51:04,160 FAMILY WHO CARRY THE SAME 3502 02:51:04,160 --> 02:51:07,640 MUTATION IN THE GENE, THIS PTLC1 3503 02:51:07,640 --> 02:51:09,600 AND I CAN SPEAK FROM PERSONAL 3504 02:51:09,600 --> 02:51:12,120 EXPERIENCE SHE'S VERY 3505 02:51:12,120 --> 02:51:12,760 PERSISTENT. 3506 02:51:12,760 --> 02:51:16,800 WE HAD KNOWN ABOUT RIVKA AND HER 3507 02:51:16,800 --> 02:51:18,040 FAMILY BUT DUE TO THE PANDEMIC 3508 02:51:18,040 --> 02:51:22,280 THEY DIDN'T HAVE THE OPPORTUNITY 3509 02:51:22,280 --> 02:51:28,520 TO COME TO THE NIH UNTIL LAST 3510 02:51:28,520 --> 02:51:30,040 YEAR AND HER AND HER SIBLINGS 3511 02:51:30,040 --> 02:51:32,640 HAVE THIS MUTATION AND AS SHE'LL 3512 02:51:32,640 --> 02:51:33,720 EXPLAIN THE DISEASE AFFECTS HER 3513 02:51:33,720 --> 02:51:37,080 AND HER FAMILY MEMBERS IN 3514 02:51:37,080 --> 02:51:42,200 DIFFERENT WAYS BUT I HOPE THAT 3515 02:51:42,200 --> 02:51:45,320 YOU WILL LEARN MORE ABOUT HER 3516 02:51:45,320 --> 02:51:46,720 EXPERIENCE AND HER STORY AND 3517 02:51:46,720 --> 02:51:48,320 HOPES FOR THE FUTURE AS SHE 3518 02:51:48,320 --> 02:51:48,640 TALKS TO US. 3519 02:51:48,640 --> 02:51:52,080 HI, RIVKA. 3520 02:51:52,080 --> 02:51:53,440 >> HI, EVERYONE. 3521 02:51:53,440 --> 02:51:55,560 >> CAN YOU TELL US A LITTLE BIT 3522 02:51:55,560 --> 02:51:57,840 ABOUT YOURSELF, YOUR FAMILY AND 3523 02:51:57,840 --> 02:52:02,760 HOW THIS DISEASE HAS AFFECTED 3524 02:52:02,760 --> 02:52:04,520 YOU AS YOU'VE GONE THROUGH 3525 02:52:04,520 --> 02:52:06,960 CHILDHOOD AND SO ON. 3526 02:52:06,960 --> 02:52:10,160 >> SURELY. 3527 02:52:10,160 --> 02:52:12,160 I REALIZED THERE WAS SOMETHING 3528 02:52:12,160 --> 02:52:14,160 WRONG WHEN I SAW MY SISTER AND I 3529 02:52:14,160 --> 02:52:17,600 WERE PLAYING IN THE BACKYARD AND 3530 02:52:17,600 --> 02:52:19,960 I NOTICED SHE WAS DOING WHAT TO 3531 02:52:19,960 --> 02:52:27,680 ME LOOKS LIKE A MOON WALK A LA 3532 02:52:27,680 --> 02:52:29,160 MICHAEL JACKSON WALKING ON HER 3533 02:52:29,160 --> 02:52:31,560 TOES AND I MENTIONED IT TO HER 3534 02:52:31,560 --> 02:52:33,360 AND SAID WHY ARE YOU WALKING 3535 02:52:33,360 --> 02:52:35,560 THAT WAY AND SHE SAID THAT'S HOW 3536 02:52:35,560 --> 02:52:36,880 I WALK. 3537 02:52:36,880 --> 02:52:37,800 WE WERE REALLY ACTIVE KIDS AS 3538 02:52:37,800 --> 02:52:41,000 YOU CAN SEE IN THE PICTURES, I 3539 02:52:41,000 --> 02:52:46,760 LIKED HORSEBACK RIDING AND WAS 3540 02:52:46,760 --> 02:52:53,680 ALWAYS ON THE PLAYGROUND AND I 3541 02:52:53,680 --> 02:52:56,240 TOOK TAEKWONDO FOR 10 YEARS AND 3542 02:52:56,240 --> 02:52:58,520 PLAYED SOCCER AND THINGS STARTED 3543 02:52:58,520 --> 02:53:05,040 TO GET MORE DIFFICULT FOR ME AND 3544 02:53:05,040 --> 02:53:07,000 I WASN'T GOING AS FAST AS I 3545 02:53:07,000 --> 02:53:08,360 WANTED TO GO AND I REMEMBER 3546 02:53:08,360 --> 02:53:09,920 THINKING DURING A RELAY RACE 3547 02:53:09,920 --> 02:53:13,200 THAT I WANTED MY BODY TO GO 3548 02:53:13,200 --> 02:53:18,520 FASTER AND IT WASN'T AND I 3549 02:53:18,520 --> 02:53:19,800 ALREADY UNDERSTAND A LITTLE BIT 3550 02:53:19,800 --> 02:53:21,480 FROM PBS PROGRAMMING THAT THE 3551 02:53:21,480 --> 02:53:27,040 BRAIN IS TALKING TO YOUR MUSCLES 3552 02:53:27,040 --> 02:53:31,000 AND YOUR MUSCLES PICK UP THAT 3553 02:53:31,000 --> 02:53:32,320 SIGNAL AND DO WHAT THEY'RE 3554 02:53:32,320 --> 02:53:34,920 SUPPOSED TO AND CONFUSED WHY 3555 02:53:34,920 --> 02:53:37,160 THAT HASN'T HAPPENING WITH ME. 3556 02:53:37,160 --> 02:53:39,600 I GOT MY SECOND-DEGREE BLACK 3557 02:53:39,600 --> 02:53:43,680 BELT AND USED TO PLAY THE DRUMS 3558 02:53:43,680 --> 02:53:46,760 AND THOSE ARE VERY ACTIVE THINGS 3559 02:53:46,760 --> 02:53:48,680 FOR YOUR MUSCLE GROUPS AND IT 3560 02:53:48,680 --> 02:53:49,280 BECAME MORE DIFFICULT FOR ME 3561 02:53:49,280 --> 02:53:56,080 OVER TIME. 3562 02:53:56,080 --> 02:53:57,400 IT WAS DEMORALIZING AND 3563 02:53:57,400 --> 02:53:58,000 FRUSTRATING SO I WANTED TO 3564 02:53:58,000 --> 02:54:00,040 FIGURE IT OUT. 3565 02:54:00,040 --> 02:54:00,720 >> THANK YOU FOR SHARING ALL 3566 02:54:00,720 --> 02:54:09,040 THAT. 3567 02:54:09,040 --> 02:54:10,280 CAN YOU ALSO TELL US A LITTLE 3568 02:54:10,280 --> 02:54:11,960 BIT ABOUT AS YOU NOTICE THE 3569 02:54:11,960 --> 02:54:14,680 WEAKNESS WAS PROGRESSING HOW 3570 02:54:14,680 --> 02:54:17,320 THAT MIGHT HAVE AFFECTED YOUR 3571 02:54:17,320 --> 02:54:18,320 RELATIONSHIP WITH OTHERS OR 3572 02:54:18,320 --> 02:54:22,360 OTHER FUNCTIONS THAT YOU 3573 02:54:22,360 --> 02:54:23,800 PARTICIPATED IN THROUGHOUT LIFE 3574 02:54:23,800 --> 02:54:28,040 THAT ARE IMPORTANT TO YOU? 3575 02:54:28,040 --> 02:54:28,720 >> SURE. 3576 02:54:28,720 --> 02:54:31,800 SO YOU HAD MENTIONED I'M A VERY 3577 02:54:31,800 --> 02:54:32,600 ACTIVE PERSON. 3578 02:54:32,600 --> 02:54:36,160 I'M ACTIVE IN MY SYNAGOGUE, I'M 3579 02:54:36,160 --> 02:54:42,560 AN ACTIVE VOLUNTEER IN MY 3580 02:54:42,560 --> 02:54:45,440 COMMUNITY AND COULDN'T DO THOSE 3581 02:54:45,440 --> 02:54:47,040 THINGS SO SEPTEMBER 2009 TO JUNE 3582 02:54:47,040 --> 02:54:50,960 2010 I WAS IN ISRAEL FOR A YEAR 3583 02:54:50,960 --> 02:54:53,920 OF STUDY ABROAD AND IN ISRAEL 3584 02:54:53,920 --> 02:54:55,680 THERE'S LOTS OF MOUNTAINS TO 3585 02:54:55,680 --> 02:54:56,160 HIKE. 3586 02:54:56,160 --> 02:54:58,640 IT WAS REALLY DIFFICULT FOR KNOW 3587 02:54:58,640 --> 02:55:02,560 HIKE UP ONE CERTAIN MOUNTAIN. 3588 02:55:02,560 --> 02:55:04,960 I REMEMBER CRYING ON THE BUS 3589 02:55:04,960 --> 02:55:07,160 BACK TO JERUSALEM SAYING TO 3590 02:55:07,160 --> 02:55:09,840 MYSELF, OH, NO, WHAT IF I HAVE 3591 02:55:09,840 --> 02:55:12,040 WHAT MY SIBLINGS HAVE SO CLEARLY 3592 02:55:12,040 --> 02:55:18,960 HAVE AS A MUSCLE PROBLEM. 3593 02:55:18,960 --> 02:55:21,000 AND WHEN I GOT BACK TO THE 3594 02:55:21,000 --> 02:55:22,960 UNITED STATES I DECIDED TO DIG 3595 02:55:22,960 --> 02:55:26,160 DEEPLY INTO FIGURING OUT HOW I 3596 02:55:26,160 --> 02:55:36,680 COULD AMELIORATE THAT PROBLEM. 3597 02:55:37,360 --> 02:55:40,040 I WANT TO SWITCH GEARS A LITTLE 3598 02:55:40,040 --> 02:55:42,000 BIT AND HEAR AS YOU WENT ON THIS 3599 02:55:42,000 --> 02:55:43,600 QUEST TO FIGURE OUT WHAT'S GOING 3600 02:55:43,600 --> 02:55:46,960 ON WITH YOU AND YOUR FAMILY, HOW 3601 02:55:46,960 --> 02:55:50,720 YOUR INTERACTIONS WITH MEDICAL 3602 02:55:50,720 --> 02:55:52,880 PROFESSIONALS, HOW LONG DID IT 3603 02:55:52,880 --> 02:55:54,080 TAKE, WHAT TYPE OF TESTING DID 3604 02:55:54,080 --> 02:55:58,160 YOU GO THROUGH OVER THE YEARS 3605 02:55:58,160 --> 02:55:59,880 UNTIL THE DIAGNOSIS WAS 3606 02:55:59,880 --> 02:56:00,360 EVENTUALLY IDENTIFIED. 3607 02:56:00,360 --> 02:56:02,960 >> IT'S BEEN A COUPLE YEARS. 3608 02:56:02,960 --> 02:56:07,960 I MEAN ABOUT 10. 3609 02:56:07,960 --> 02:56:09,800 ABOUT A DECADE. 3610 02:56:09,800 --> 02:56:12,520 MY SIB LINGS BECAUSE WE WERE THE 3611 02:56:12,520 --> 02:56:18,080 FIRST TO PRESENT WITH THIS 3612 02:56:18,080 --> 02:56:22,080 JUVENILE ALS THEY WERE SEEN BY 3613 02:56:22,080 --> 02:56:28,960 NEUROLOGISTS FIRST AND THEY WERE 3614 02:56:28,960 --> 02:56:30,960 TOLD THEY HAD A DIFFERENT TYPE 3615 02:56:30,960 --> 02:56:33,880 OF MUSCLE DISEASE THEN THINGS 3616 02:56:33,880 --> 02:56:35,920 WEREN'T MAKING SENSE IN TERMS OF 3617 02:56:35,920 --> 02:56:37,680 THE FACT THAT WE DON'T 3618 02:56:37,680 --> 02:56:38,960 EXPERIENCE PAIN AND WHEN I SAY 3619 02:56:38,960 --> 02:56:42,080 WE DON'T EXPERIENCE PAIN I MEAN 3620 02:56:42,080 --> 02:56:47,320 MY SIBLINGS ARE NOT IN CONSTANT 3621 02:56:47,320 --> 02:56:47,960 PAIN. 3622 02:56:47,960 --> 02:56:50,160 WE FEEL PAIN IF WE TOUCH 3623 02:56:50,160 --> 02:56:51,480 SOMETHING HOT OR PRICK OUR 3624 02:56:51,480 --> 02:56:52,040 FINGERS. 3625 02:56:52,040 --> 02:56:55,840 WE'RE NOT NEUROPATHIC BUT WE 3626 02:56:55,840 --> 02:57:02,680 DON'T FEEL A CONSISTENT PAIN. 3627 02:57:02,680 --> 02:57:04,240 SO THAT DIAGNOSIS DIDN'T MAKE 3628 02:57:04,240 --> 02:57:04,440 SENSE. 3629 02:57:04,440 --> 02:57:06,560 I STARTED TO REACH OUT TO 3630 02:57:06,560 --> 02:57:10,880 MEDICAL PROFESSIONALS. 3631 02:57:10,880 --> 02:57:18,080 I REACHED OUT TO A DOCTORATE 3632 02:57:18,080 --> 02:57:20,080 HACKENSACK MEDICAL CENTER AND 3633 02:57:20,080 --> 02:57:22,320 DID SEQUENCING WHICH TOOK ABOUT 3634 02:57:22,320 --> 02:57:25,040 A YEAR TO SEQUENCE MY WHOLE 3635 02:57:25,040 --> 02:57:26,040 GENOME AND THEY HAD INITIALLY 3636 02:57:26,040 --> 02:57:31,960 TOLD ME THAT THERE WAS A PROBLEM 3637 02:57:31,960 --> 02:57:34,680 ON MY A63 GENE AND A SAID 3638 02:57:34,680 --> 02:57:38,200 PERFECT, WE HAVE AN ANSWER. 3639 02:57:38,200 --> 02:57:41,400 AND IT MADE SENSE TO ME BECAUSE 3640 02:57:41,400 --> 02:57:44,320 IT'S A COLLAGEN GENE AND THAT 3641 02:57:44,320 --> 02:57:46,440 HELPS MAKE MUSCLES AND MUSCLE 3642 02:57:46,440 --> 02:57:47,760 TONE BUT THEN THE DOCTORS DID 3643 02:57:47,760 --> 02:57:52,200 MORE RESEARCH AND DECIDED IT WAS 3644 02:57:52,200 --> 02:57:58,960 A VARIATION ON THE SPCTL1 GENE 3645 02:57:58,960 --> 02:58:01,400 AND THAT'S WHEN DR. MOHASSEL 3646 02:58:01,400 --> 02:58:02,360 GOLD INVOLVED. 3647 02:58:02,360 --> 02:58:03,480 >> THAT'S RIGHT. 3648 02:58:03,480 --> 02:58:05,800 BY THE TIME WE WERE ABLE TO GET 3649 02:58:05,800 --> 02:58:07,840 IN TOUCH OR YOUR LOCAL DOCTORS 3650 02:58:07,840 --> 02:58:09,880 WERE ALREADY ON THE RIGHT TRACK 3651 02:58:09,880 --> 02:58:12,120 THROUGH A COLLABORATION WE 3652 02:58:12,120 --> 02:58:14,920 BECAME AWARE OF THAT MUTATION IN 3653 02:58:14,920 --> 02:58:18,120 YOUR FAMILY THROUGH THE 3654 02:58:18,120 --> 02:58:19,120 HACKENSACK GROUP. 3655 02:58:19,120 --> 02:58:20,360 AND THEY GOT YOU ALL DOWN HERE 3656 02:58:20,360 --> 02:58:28,200 AT THE NIH. 3657 02:58:28,200 --> 02:58:29,920 THE LAST OPEN QUESTION I WANTED 3658 02:58:29,920 --> 02:58:31,840 TO ASK YOU TO TELL US A LITTLE 3659 02:58:31,840 --> 02:58:35,480 BIT ABOUT HOW THINGS ARE GOING 3660 02:58:35,480 --> 02:58:36,480 FOR YOU RIGHT NOW. 3661 02:58:36,480 --> 02:58:37,240 WHAT ARE THE THINGS YOU'RE 3662 02:58:37,240 --> 02:58:39,800 INVOLVED IN AND HOPES FOR THE 3663 02:58:39,800 --> 02:58:42,360 FUTURE AND WHAT THE MEDICAL 3664 02:58:42,360 --> 02:58:43,200 RESEARCH CAN POTENTIALLY DELIVER 3665 02:58:43,200 --> 02:58:46,920 FOR YOU AND YOUR FAMILY. 3666 02:58:46,920 --> 02:58:50,560 >> YEAH, SURE. 3667 02:58:50,560 --> 02:58:52,480 SO RIGHT NOW MY HOPES FOR THE 3668 02:58:52,480 --> 02:58:54,960 FUTURE ARE PRETTY HIGH. 3669 02:58:54,960 --> 02:58:58,320 MAYBE NAIVE OF ME BUT I'M VERY 3670 02:58:58,320 --> 02:59:03,640 HOPEFUL BECAUSE EVEN 10 OR 20 3671 02:59:03,640 --> 02:59:06,200 YEARS AGO THE WHOLE GENOME 3672 02:59:06,200 --> 02:59:11,440 HADN'T BEEN SEQUENCED AND THEY 3673 02:59:11,440 --> 02:59:16,720 WOULDN'T HAVE BEEN ABLE TO PIN 3674 02:59:16,720 --> 02:59:27,280 POINT THE PROBLEM ON WHAT TYPE 3675 02:59:29,440 --> 02:59:33,280 OF GENE AND I GOT DETAILED 3676 02:59:33,280 --> 02:59:35,640 FASCINATING RESEARCH AND SO I 3677 02:59:35,640 --> 02:59:37,240 HAVE HOPES THE MEDICAL COMMUNITY 3678 02:59:37,240 --> 02:59:39,200 HAS AN INTEREST IN THIS BECAUSE 3679 02:59:39,200 --> 02:59:43,920 EVEN THOUGH THIS IS NOT A 3680 02:59:43,920 --> 02:59:46,280 TYPICAL TYPE OF ALS, IT IMPACTS 3681 02:59:46,280 --> 02:59:48,840 MY LIFE IN SUCH A GREAT WAY. 3682 02:59:48,840 --> 02:59:50,320 I CAN'T EXPERIENCE NATURE THE 3683 02:59:50,320 --> 02:59:52,040 WAY I'D WANT TO. 3684 02:59:52,040 --> 02:59:53,280 I CAN'T WORK OUT AND PLAY SPORTS 3685 02:59:53,280 --> 02:59:54,960 THE WAY I'D WANT TO AND I AM WHY 3686 02:59:54,960 --> 03:00:05,560 IT PA-- IT IMPACTS MY JEWISH LI 3687 03:00:05,560 --> 03:00:09,720 AND I CAN'T PARTICIPATE IN 3688 03:00:09,720 --> 03:00:13,080 SURVEYS ASPECTS OF JUDAISM AND 3689 03:00:13,080 --> 03:00:16,600 EVEN PRAYER A LOT OF SITTING AND 3690 03:00:16,600 --> 03:00:22,760 STANDING WHEN THE ARC IS OPEN 3691 03:00:22,760 --> 03:00:26,880 AND I UNDERSTAND BUT IT MAKES ME 3692 03:00:26,880 --> 03:00:28,360 FEEL UNCOMFORTABLE AND I TRY TO 3693 03:00:28,360 --> 03:00:33,760 TRY MY BEST AT EVERYTHING THAT I 3694 03:00:33,760 --> 03:00:36,680 DO AND ANYTHING I CAN DO TO HELP 3695 03:00:36,680 --> 03:00:38,400 THE MEDICAL COMMUNITY TO FIGURE 3696 03:00:38,400 --> 03:00:40,800 THIS OUT BECAUSE IF THERE IS A 3697 03:00:40,800 --> 03:00:41,720 SOLUTION, I WOULD LOVE TO HELP 3698 03:00:41,720 --> 03:00:44,200 BE PAERLT OF THAT. 3699 03:00:44,200 --> 03:00:46,960 -- AN APART OF THAT. 3700 03:00:46,960 --> 03:00:47,040 3701 03:00:47,800 --> 03:00:49,680 >> THANK YOU FOR ALL THAT. 3702 03:00:49,680 --> 03:00:52,480 AT THIS POINT WE CAN PAUSE ON 3703 03:00:52,480 --> 03:00:52,680 THIS. 3704 03:00:52,680 --> 03:00:54,080 DO YOU WANT TO SHARE ANYTHING 3705 03:00:54,080 --> 03:00:58,680 ELSE WITH EVERYONE? 3706 03:00:58,680 --> 03:01:02,200 >> I JUST WANT TO MAKE SURE I 3707 03:01:02,200 --> 03:01:04,160 DON'T PASS WHATEVER THIS ALS 3708 03:01:04,160 --> 03:01:05,600 GENOME TYPE IS. 3709 03:01:05,600 --> 03:01:07,720 I DON'T WANT TO PASS THAT DOWN 3710 03:01:07,720 --> 03:01:09,200 TO CHILDREN. 3711 03:01:09,200 --> 03:01:11,360 I KNOW THAT IS SLIGHTLY 3712 03:01:11,360 --> 03:01:14,040 COMPLICATED BECAUSE I WOULD NEED 3713 03:01:14,040 --> 03:01:17,520 TO MAKE AN EMBRYO AND IT WOULD 3714 03:01:17,520 --> 03:01:19,760 NEED TO BE TAKEN OUT AND I KNOW 3715 03:01:19,760 --> 03:01:22,960 THAT IS SOMETHING THAT IS SORT 3716 03:01:22,960 --> 03:01:29,360 OF COMPLICATED AT THIS POINT 3717 03:01:29,360 --> 03:01:30,960 BECAUSE EMBRYOS ARE SMALL AND 3718 03:01:30,960 --> 03:01:33,240 GENES ARE EVEN SMALLER IN THOSE 3719 03:01:33,240 --> 03:01:33,480 EMBRYOS. 3720 03:01:33,480 --> 03:01:37,880 I JUST HOPE I CAN GET THE LIFE 3721 03:01:37,880 --> 03:01:39,920 THAT I HAD BACK IN SOME 3722 03:01:39,920 --> 03:01:40,160 CAPACITY. 3723 03:01:40,160 --> 03:01:42,080 I'M NOT ASKING FOR IT ALL. 3724 03:01:42,080 --> 03:01:43,600 I DON'T KNOW -- EVEN IF THERE 3725 03:01:43,600 --> 03:01:47,640 WERE A DRUG OR A TREATMENT OR A 3726 03:01:47,640 --> 03:01:49,600 THERAPY OF SOME SORT, I KNOW 3727 03:01:49,600 --> 03:01:52,600 THAT I WOULDN'T BE ABLE TO GO 3728 03:01:52,600 --> 03:02:03,120 BACK TO TAEKWONDO AND HOPE TO 3729 03:02:06,400 --> 03:02:08,240 GET BACK TO AN ACTIVE LIFESTYLE 3730 03:02:08,240 --> 03:02:12,080 AND I KNOW I MAINTAIN AN ACTIVE 3731 03:02:12,080 --> 03:02:13,520 LIFESTYLE DESPITE MY PHYSICAL 3732 03:02:13,520 --> 03:02:13,800 CHALLENGES. 3733 03:02:13,800 --> 03:02:18,880 THAT'S MY HOPE. 3734 03:02:18,880 --> 03:02:19,400 >> THANK YOU VERY MUCH. 3735 03:02:19,400 --> 03:02:21,560 >> THANK YOU. 3736 03:02:21,560 --> 03:02:28,080 >> I THINK WE KAN OPEN THIS UP. 3737 03:02:28,080 --> 03:02:30,040 RIVKA, I'M DR. BIANCHI THE 3738 03:02:30,040 --> 03:02:31,040 DIRECTOR OF THE NICHD. 3739 03:02:31,040 --> 03:02:32,880 I WANT TO THANK YOU FOR BEING SO 3740 03:02:32,880 --> 03:02:34,280 OPEN AND HONEST. 3741 03:02:34,280 --> 03:02:37,920 I HAD A COUPLE QUESTIONS FOR 3742 03:02:37,920 --> 03:02:38,280 YOU. 3743 03:02:38,280 --> 03:02:42,320 I AM A REPRODUCTIVE GENETICISTS 3744 03:02:42,320 --> 03:02:44,640 IN YOUR CLINIC TRAINING AND I 3745 03:02:44,640 --> 03:02:46,760 SAW YOUR FATHER WAS ON AN 3746 03:02:46,760 --> 03:02:48,360 ASSISTED MOBILITY DEVICE. 3747 03:02:48,360 --> 03:02:49,600 IS HE ALSO AFFECTED? 3748 03:02:49,600 --> 03:02:52,800 >> INTERESTINGLY, MY FATHER IS 3749 03:02:52,800 --> 03:02:54,080 NOT IMPACTED BY THIS ATYPICAL 3750 03:02:54,080 --> 03:02:57,880 TYPE OF ALS. 3751 03:02:57,880 --> 03:03:07,000 MY DAD HAS AN IDIOPATHIC NEU 3752 03:03:07,000 --> 03:03:13,720 NEUROON -- NEUROPATHY AND I 3753 03:03:13,720 --> 03:03:20,720 DON'T KNOW TO WHAT EXTENT HIS 3754 03:03:20,720 --> 03:03:23,520 CONDITION IMPACTS OURS BUT EVEN 3755 03:03:23,520 --> 03:03:26,840 IF HE HAS THE SAME TYPE OF 3756 03:03:26,840 --> 03:03:28,360 NEUROMUSCULAR POSITION WE HAVE, 3757 03:03:28,360 --> 03:03:31,880 IT DOESN'T PRESENT THE SAME WAY. 3758 03:03:31,880 --> 03:03:33,600 >> HAS EVERYONE IN THE FAMILY 3759 03:03:33,600 --> 03:03:35,040 UNDER GONE THE GENETIC TESTING 3760 03:03:35,040 --> 03:03:38,800 NOW THAT WE KNOW ABOUT THE 3761 03:03:38,800 --> 03:03:39,280 SPCTL1 MUTATION? 3762 03:03:39,280 --> 03:03:45,320 >> NOT EVERYONE HAS BECAUSE I 3763 03:03:45,320 --> 03:03:51,960 THINK IT IS PRESUMED THAT FOUR 3764 03:03:51,960 --> 03:03:55,360 CHILDREN HAVE THE SAME PARENTS 3765 03:03:55,360 --> 03:04:00,080 THAN IT IS MOST LIKELY THE SAME 3766 03:04:00,080 --> 03:04:02,960 MALFUNCTIONING GENE THAT IS 3767 03:04:02,960 --> 03:04:06,880 CAUSING THIS ATYPICAL ALS. 3768 03:04:06,880 --> 03:04:09,280 >> IF I MAY JUST ADD TO THAT A 3769 03:04:09,280 --> 03:04:12,960 LITTLE BIT. 3770 03:04:12,960 --> 03:04:15,680 RIVKA'S FAMILY IS A LITTLE BIT 3771 03:04:15,680 --> 03:04:17,400 COMPLICATED AND WE DON'T 3772 03:04:17,400 --> 03:04:18,120 UNDERSTAND EVERYTHING FULLY 3773 03:04:18,120 --> 03:04:20,080 GOING ON BECAUSE HER FATHER 3774 03:04:20,080 --> 03:04:21,920 CARRIES THE EXACT SAME MUTATION 3775 03:04:21,920 --> 03:04:25,560 AS ALL THE SIBLINGS BUT PRESENTS 3776 03:04:25,560 --> 03:04:26,360 A SLIGHTLY DIFFERENT PHENOTYPE 3777 03:04:26,360 --> 03:04:28,800 AND HE HAPPENS TO HAVE A 3778 03:04:28,800 --> 03:04:33,240 SLIGHTLY DIFFERENT METABOLIC 3779 03:04:33,240 --> 03:04:36,080 PROFILE IN THIS SPHINGOLIPID 3780 03:04:36,080 --> 03:04:38,400 OMICS AND DON'T UNDERSTAND WHAT 3781 03:04:38,400 --> 03:04:41,240 MAY BE AT PLAY HERE BUT THE 3782 03:04:41,240 --> 03:04:42,520 WHOLE GENOME HAS HAD WHOLE EXOME 3783 03:04:42,520 --> 03:04:48,080 AND GENOME SEQUENCING AND THE 3784 03:04:48,080 --> 03:04:51,600 FATHER HAS A SLIGHT PHENOTYPIC 3785 03:04:51,600 --> 03:04:51,920 VARIABILITY. 3786 03:04:51,920 --> 03:04:56,960 >> WHAT I'M GETTING AT BECAUSE 3787 03:04:56,960 --> 03:05:00,400 YOU MENTIONED CHILDREN, WHETHER 3788 03:05:00,400 --> 03:05:02,960 THIS IS AUTOSOMAL DOMINANT 3789 03:05:02,960 --> 03:05:05,240 VERSUS RECESSIVE AND I THINK 3790 03:05:05,240 --> 03:05:09,000 YOU'RE SAYING DOMINANT. 3791 03:05:09,000 --> 03:05:11,200 50% OF CHILDREN OF AFFECTED 3792 03:05:11,200 --> 03:05:14,240 PEOPLE WOULD BE EXPECTED TO HAVE 3793 03:05:14,240 --> 03:05:17,560 THIS VARIATION IN THE GOON AND 3794 03:05:17,560 --> 03:05:19,920 YOU MIGHT SAY HOW COME IT'S 4 3795 03:05:19,920 --> 03:05:21,800 OUT OF 4. 3796 03:05:21,800 --> 03:05:23,280 UNFORTUNATELY GENETICS HAS NO 3797 03:05:23,280 --> 03:05:24,520 MEMORY SO EACH CONCEPTION IS A 3798 03:05:24,520 --> 03:05:25,240 NEW EVENT. 3799 03:05:25,240 --> 03:05:28,280 I DID WANT TO CORRECT ONE THING 3800 03:05:28,280 --> 03:05:30,960 YOU SAID, YOU SEEM TO IMPLY THAT 3801 03:05:30,960 --> 03:05:34,640 IN AN EMBRYO WE WOULD TAKE OUT 3802 03:05:34,640 --> 03:05:37,200 THE MUTATED GENE AND SO THAT IS 3803 03:05:37,200 --> 03:05:40,400 NOT WHAT WE DO. 3804 03:05:40,400 --> 03:05:50,960 RIGHT NOW WHAT WE DO, IN VITRO 3805 03:05:50,960 --> 03:05:54,080 FERTILIZATION AND ONLY TRANSFER 3806 03:05:54,080 --> 03:05:55,480 EMBRYOS WHO DON'T HAVE THE 3807 03:05:55,480 --> 03:05:57,320 MUTATION AND IT'S POSSIBLE FOR 3808 03:05:57,320 --> 03:05:58,520 ANYONE IN THE FAMILY WHO WANTS 3809 03:05:58,520 --> 03:06:03,960 TO PURSUE HAVING CHILDREN TO 3810 03:06:03,960 --> 03:06:05,800 TRANSFER UNAFFECTED EMBRYOS IF 3811 03:06:05,800 --> 03:06:07,000 THAT'S THE DESIRE. 3812 03:06:07,000 --> 03:06:08,160 >> SORRY. 3813 03:06:08,160 --> 03:06:09,080 >> THAT'S CLINICALLY AVAILABLE 3814 03:06:09,080 --> 03:06:09,400 RIGHT NOW. 3815 03:06:09,400 --> 03:06:12,120 >> OKAY, GREAT. 3816 03:06:12,120 --> 03:06:22,480 >> OTHER QUESTIONS? 3817 03:06:30,680 --> 03:06:32,920 >> THANK YOU FOR SHARING YOUR 3818 03:06:32,920 --> 03:06:33,200 SITUATION. 3819 03:06:33,200 --> 03:06:34,960 I HAVE A QUESTION IN TERMS OF 3820 03:06:34,960 --> 03:06:38,920 TECHNOLOGIES YOU MAY BE AWARE 3821 03:06:38,920 --> 03:06:41,760 THAT TO HAVE REGAINED MOBILITY 3822 03:06:41,760 --> 03:06:43,960 FOR EXAMPLE OTHER TECHNOLOGIES, 3823 03:06:43,960 --> 03:06:49,840 I WONDER IF YOU'RE AWARE OF THE 3824 03:06:49,840 --> 03:06:55,320 TECHNOLOGIES OR IF THERE'S 3825 03:06:55,320 --> 03:06:56,640 BARRIERS. 3826 03:06:56,640 --> 03:07:07,120 >> I'M AWARE OF EXOSKELETON I 3827 03:07:08,920 --> 03:07:12,680 THINK WHAT IF MY ANKLE ROLLS OUT 3828 03:07:12,680 --> 03:07:15,360 WHILE I AM WALKING AND NOT ONLY 3829 03:07:15,360 --> 03:07:17,600 WOULD I FALL BECAUSE IT HAPPENS 3830 03:07:17,600 --> 03:07:24,040 TO BE MY ANKLE IS THE IS THE 3831 03:07:24,040 --> 03:07:27,240 CAUSE OF MOST OF MY FALLING. 3832 03:07:27,240 --> 03:07:32,360 MY ANKLE ROLLS OUT TOWARDS THE 3833 03:07:32,360 --> 03:07:33,840 OUTSIDE OF THE HEEL AND THEN I 3834 03:07:33,840 --> 03:07:34,920 FALL AND THERE'S NOTHING I CAN 3835 03:07:34,920 --> 03:07:36,080 DO TO STOP IT. 3836 03:07:36,080 --> 03:07:46,560 IF I WERE TO FALL IN AN EXO 3837 03:07:48,160 --> 03:07:50,960 SKELETON WOULD I GET MORE HURT 3838 03:07:50,960 --> 03:07:54,880 AND I DO USE A SMALL SCOOTER SO 3839 03:07:54,880 --> 03:07:57,840 IT HAS A JOY STICK. 3840 03:07:57,840 --> 03:08:01,600 IT HAS A SPEED DIAL. 3841 03:08:01,600 --> 03:08:03,280 IT'S NOTHING FANCY. 3842 03:08:03,280 --> 03:08:05,280 MY BROTHER'S IS VERY FANCY. 3843 03:08:05,280 --> 03:08:08,080 IT CAN RAISE ITSELF AND LOWER 3844 03:08:08,080 --> 03:08:10,120 ITSELF, IT CAN LEAN BACK. 3845 03:08:10,120 --> 03:08:10,840 I DON'T HAVE ANYTHING LIKE THAT 3846 03:08:10,840 --> 03:08:21,120 AND THAT'S FINE. 3847 03:08:22,120 --> 03:08:26,000 I WAS ALSO TOLD BECAUSE THERE'S 3848 03:08:26,000 --> 03:08:29,320 SUCH GREAT MUSCLE WEAKNESS IN MY 3849 03:08:29,320 --> 03:08:31,480 LEGS AND THIGHS SPECIFIC, WHAT 3850 03:08:31,480 --> 03:08:33,080 IF MY THIGHS JUST GAVE OUT AFTER 3851 03:08:33,080 --> 03:08:35,240 BEING SO TIRED FROM WALKING AND 3852 03:08:35,240 --> 03:08:40,880 THEN WHAT GOOD WOULD IT DO? 3853 03:08:40,880 --> 03:08:42,160 >> HAVE YOU CONSULTED WITH A 3854 03:08:42,160 --> 03:08:42,960 SPECIALIST? 3855 03:08:42,960 --> 03:08:53,200 >> I HAVE NOT. 3856 03:09:03,040 --> 03:09:05,960 >> IT MAY NOT BE A SOLUTION BUT 3857 03:09:05,960 --> 03:09:07,280 IT WOULD BE GOOD TO LEARN MORE 3858 03:09:07,280 --> 03:09:09,760 ABOUT THE TECHNOLOGY AT LEAST TO 3859 03:09:09,760 --> 03:09:14,960 MITIGATE SOME OF THE FEARS YOU 3860 03:09:14,960 --> 03:09:15,160 HAVE. 3861 03:09:15,160 --> 03:09:19,760 >> THANK YOU. 3862 03:09:19,760 --> 03:09:24,160 >> RIVKA, YOU MAY OR MAY NOT 3863 03:09:24,160 --> 03:09:30,080 KNOW THE NIH HAS THE CENTER FOR 3864 03:09:30,080 --> 03:09:31,920 NATIONAL REHABILITATIVE RESEARCH 3865 03:09:31,920 --> 03:09:34,600 AND EXPERTS IN REHABILITATIVE 3866 03:09:34,600 --> 03:09:34,960 MEDICINE. 3867 03:09:34,960 --> 03:09:38,400 WE'RE HAPPY TO CONNECT YOU AS A 3868 03:09:38,400 --> 03:09:48,760 BENEFIT OF JOINING US. 3869 03:09:54,600 --> 03:10:05,000 >> I'M A REPRODUCTIVE E 3870 03:10:16,200 --> 03:10:17,120 ENDOCRINOLOGIST AND SOMETIMES 3871 03:10:17,120 --> 03:10:18,840 THERE'S A LOT YOU CAN LEARN TO 3872 03:10:18,840 --> 03:10:21,280 HELP EMPOWER YOU AND IF YOU'RE 3873 03:10:21,280 --> 03:10:26,560 IN NEW YORK I KNOW LOTS OF 3874 03:10:26,560 --> 03:10:32,880 REPRODUCTIVE ENDOCRINOLOGISTS IN 3875 03:10:32,880 --> 03:10:43,040 NEW YORK. 3876 03:10:54,200 --> 03:10:57,480 IF WE CAN HELP YOU MAKE YOUR 3877 03:10:57,480 --> 03:10:58,400 LIFE BETTER I DON'T KNOW ANYONE 3878 03:10:58,400 --> 03:11:00,920 WOULDN'T WANT TO DO SO AND IF 3879 03:11:00,920 --> 03:11:02,680 THERE'S A WAY TO SHARE 3880 03:11:02,680 --> 03:11:04,400 INFORMATION, PLEASE LET US KNOW. 3881 03:11:04,400 --> 03:11:04,760 >> THANK YOU. 3882 03:11:04,760 --> 03:11:06,160 WE'LL FOLLOW-UP ON SOME OF THESE 3883 03:11:06,160 --> 03:11:13,480 RESOURCES. 3884 03:11:13,480 --> 03:11:14,960 WE'LL TELL YOU WHERE THEY ARE 3885 03:11:14,960 --> 03:11:16,280 AND IF YOU WANT TO FOLLOW-UP, 3886 03:11:16,280 --> 03:11:17,160 THAT'S YOUR DECISION. 3887 03:11:17,160 --> 03:11:18,640 >> THANK YOU, DR. BIANCHI. 3888 03:11:18,640 --> 03:11:21,080 >> ANY OTHER QUESTIONS OR 3889 03:11:21,080 --> 03:11:21,360 COMMENTS? 3890 03:11:21,360 --> 03:11:22,520 I CAN'T TELL YOU HOW IMPORTANT 3891 03:11:22,520 --> 03:11:24,120 AND VALUABLE THIS IS TO ALL OF 3892 03:11:24,120 --> 03:11:27,400 US TO HEAR FROM SOMEONE WITH 3893 03:11:27,400 --> 03:11:27,920 LIVED EXPERIENCE. 3894 03:11:27,920 --> 03:11:30,280 I HOPE, CLAIR, MEMBERS OF YOUR 3895 03:11:30,280 --> 03:11:32,720 LABORATORY ARE ALSO LISTENING 3896 03:11:32,720 --> 03:11:35,640 BECAUSE IF I WERE WORKING ON 3897 03:11:35,640 --> 03:11:38,960 THIS CONDITION, IT'S INCREDIBLY 3898 03:11:38,960 --> 03:11:40,560 INSPIRATIONAL TO HEAR DIRECTLY 3899 03:11:40,560 --> 03:11:42,600 FROM SOMEONE AND THAT MAKES IT 3900 03:11:42,600 --> 03:11:44,640 EVEN MORE IMPORTANT TO FIND A 3901 03:11:44,640 --> 03:11:47,400 CURE OR AT LEAST A TREATMENT FOR 3902 03:11:47,400 --> 03:11:49,200 THIS CONDITION. 3903 03:11:49,200 --> 03:11:51,600 I BELIEVE THAT FINDING THE GENE 3904 03:11:51,600 --> 03:11:54,040 THAT CAUSES THE PROBLEM IS HALF 3905 03:11:54,040 --> 03:12:00,040 THE BATTLE AND PEOPLE LIKE 3906 03:12:00,040 --> 03:12:04,400 DR. LE PICHON AND DR. MOHASSEL 3907 03:12:04,400 --> 03:12:08,520 WILL WORK ON THE WAY THE PROTEIN 3908 03:12:08,520 --> 03:12:10,560 INTERACTS AND HOW EITHER THE 3909 03:12:10,560 --> 03:12:14,960 GENE MUTATION CAN BE AFFECTED OR 3910 03:12:14,960 --> 03:12:18,120 ALTERNATE PATHWAYS THAT CAN 3911 03:12:18,120 --> 03:12:20,040 PROVIDE A SUBSTITUTE PROTEIN, 3912 03:12:20,040 --> 03:12:21,560 FOR EXAMPLE. 3913 03:12:21,560 --> 03:12:23,440 >> ABSOLUTELY. 3914 03:12:23,440 --> 03:12:24,720 >> THAT'S ONE ASPECT. 3915 03:12:24,720 --> 03:12:27,800 THE OTHER IS THE GENETIC ASPECT 3916 03:12:27,800 --> 03:12:28,960 AND THAT DOESN'T REQUIRE FUTURE 3917 03:12:28,960 --> 03:12:30,120 RESEARCH. 3918 03:12:30,120 --> 03:12:32,920 THAT'S AVAILABLE NOW. 3919 03:12:32,920 --> 03:12:34,680 SO WITH THAT, I THINK WE'RE 3920 03:12:34,680 --> 03:12:36,120 GOING TO ASK YOU AND 3921 03:12:36,120 --> 03:12:38,640 DR. MOHASSEL TO SIGN OFF WITH 3922 03:12:38,640 --> 03:12:41,120 OUR GREATER APPRECIATION AND 3923 03:12:41,120 --> 03:12:41,400 GRATITUDE. 3924 03:12:41,400 --> 03:12:42,960 WE REALLY APPRECIATE BOTH OF 3925 03:12:42,960 --> 03:12:44,960 YOUR TIME AND IT WAS A BEAUTIFUL 3926 03:12:44,960 --> 03:12:49,400 CONNECTION WITH THE STORY OF 3927 03:12:49,400 --> 03:12:51,120 DR. LE PICHON'S LAB RESEARCH. 3928 03:12:51,120 --> 03:12:52,600 >> THANK YOU SO MUCH. 3929 03:12:52,600 --> 03:12:54,200 I APPRECIATE YOU HAVING ME. 3930 03:12:54,200 --> 03:12:59,360 >> THANK YOU VERY MUCH. 3931 03:12:59,360 --> 03:13:02,960 >> NEXT WE HAVE THE OPPORTUNITY 3932 03:13:02,960 --> 03:13:10,120 TO LISTEN TO A PRESENTATION BY A 3933 03:13:10,120 --> 03:13:12,680 DIFFERENT REBEKAH RASOOLY ABOUT 3934 03:13:12,680 --> 03:13:14,920 THE PROCESS OF SPECIAL COUNCIL 3935 03:13:14,920 --> 03:13:25,080 REVIEW. 3936 03:13:31,600 --> 03:13:33,640 >> THANK YOU. 3937 03:13:33,640 --> 03:13:34,920 SOME HAVE BEEN ON COUNCIL ON 3938 03:13:34,920 --> 03:13:35,920 COUNCIL REVIEW. 3939 03:13:35,920 --> 03:13:38,720 THIS WAS A PROCESS OR POLICY 3940 03:13:38,720 --> 03:13:39,320 STARTED AT NIH ABOUT 10 YEARS 3941 03:13:39,320 --> 03:13:44,560 AGO. 3942 03:13:44,560 --> 03:13:48,080 WHAT IT MANDATED WAS WHEN A P.I. 3943 03:13:48,080 --> 03:13:52,080 WAS RECEIVING LARGE AMOUNTS OF 3944 03:13:52,080 --> 03:13:56,400 FUNDING ALREADY, THAT ANY NEWER 3945 03:13:56,400 --> 03:13:58,240 APPLICATION BE CONSIDERED BY THE 3946 03:13:58,240 --> 03:14:00,560 ADVISORY COUNCIL. 3947 03:14:00,560 --> 03:14:01,240 AND INITIALLY THAT THRESHOLD WAS 3948 03:14:01,240 --> 03:14:04,280 A MILLION DOLLARS OF DIRECT 3949 03:14:04,280 --> 03:14:04,840 COSTS. 3950 03:14:04,840 --> 03:14:07,760 THIS YEAR WE RAISED IT TO $2 3951 03:14:07,760 --> 03:14:13,920 MILLION OF COSTS. 3952 03:14:13,920 --> 03:14:18,960 TO REMIND YOU THE WAY THIS 3953 03:14:18,960 --> 03:14:22,360 WORKED OPERATIONALLY IS COUNT 3954 03:14:22,360 --> 03:14:23,800 THE RESEARCH PROJECTS GRANTS AND 3955 03:14:23,800 --> 03:14:25,720 EXCLUDED TRAINING AWARDS OR 3956 03:14:25,720 --> 03:14:26,480 RESOURCE AWARDS AND YOU'VE SEEN 3957 03:14:26,480 --> 03:14:28,840 ONE OR TWO OR THREE OR FOUR OF 3958 03:14:28,840 --> 03:14:38,440 THESE IN ANY GIVEN COUNCIL NOW. 3959 03:14:38,440 --> 03:14:39,880 WE'D LIKE TO TAKE ANOTHER LOOK 3960 03:14:39,880 --> 03:14:42,320 AT HOW WE CONSIDER THE 3961 03:14:42,320 --> 03:14:44,240 APPLICATIONS FROM VERY WELL 3962 03:14:44,240 --> 03:14:44,760 FUNDED INVESTIGATORS. 3963 03:14:44,760 --> 03:14:47,600 AND ONE OF THE MOTIVATIONS FOR 3964 03:14:47,600 --> 03:14:48,760 DOING THAT IS WORK THAT'S COME 3965 03:14:48,760 --> 03:14:58,800 OUT OF NIH LOOKING AT OUR ENTIRE 3966 03:14:58,800 --> 03:15:00,800 PORTFOLIO OVER THE LAST SEVERAL 3967 03:15:00,800 --> 03:15:05,800 YEARS AND WE DETERMINED THAT 3968 03:15:05,800 --> 03:15:07,800 THERE'S A CONCENTRATION OF 3969 03:15:07,800 --> 03:15:09,960 RESOURCES WITHIN A RELATIVELY 3970 03:15:09,960 --> 03:15:12,840 SMALL PROPORTION OF 3971 03:15:12,840 --> 03:15:16,320 INVESTIGATORS SUCH THAT THE TOP 3972 03:15:16,320 --> 03:15:18,880 1% OF INVESTIGATORS IN TERMS OF 3973 03:15:18,880 --> 03:15:20,480 FUNDING ARE RECEIVING LIKE 10% 3974 03:15:20,480 --> 03:15:21,920 OF ALL NIH FUNDING AND IF YOU 3975 03:15:21,920 --> 03:15:26,320 LOOK AT THE TOP 10%, THEY'RE 3976 03:15:26,320 --> 03:15:29,080 RECEIVING BETWEEN 35% AND 40% OF 3977 03:15:29,080 --> 03:15:34,560 ALL NIH FUNDING. 3978 03:15:34,560 --> 03:15:36,120 SO IT'S VERY MUCH AN INTENSE 3979 03:15:36,120 --> 03:15:36,920 CONCENTRATION. 3980 03:15:36,920 --> 03:15:40,280 WHEN YOU LOOK AT THE TOP 10%, 3981 03:15:40,280 --> 03:15:42,840 YOU SEE THEY TEND TO BE ON 3982 03:15:42,840 --> 03:15:45,400 AVERAGE, MORE MALE, MORE WHITE 3983 03:15:45,400 --> 03:15:47,400 AND LIST HISPANIC THAN THE OTHER 3984 03:15:47,400 --> 03:15:48,280 POOL OF INVESTIGATORS THAT 3985 03:15:48,280 --> 03:15:58,720 THEY'RE BEING COMPARED TO. 3986 03:16:06,080 --> 03:16:10,320 THIS IS SOMETHING WE'RE LOOKING 3987 03:16:10,320 --> 03:16:15,000 AT AS AN AGENCY AND THERE ARE 3988 03:16:15,000 --> 03:16:17,480 DIFFERENT WAYS TO LOOK AT HOW TO 3989 03:16:17,480 --> 03:16:21,800 BREAK UP THE CONCENTRATION OF 3990 03:16:21,800 --> 03:16:24,160 FUNDING WHICH ALSO LEADS TO A 3991 03:16:24,160 --> 03:16:28,760 BIT OF CONSTRAINTING OF RESEARCH 3992 03:16:28,760 --> 03:16:31,360 AND RESEARCH AVENUES WHEN YOU 3993 03:16:31,360 --> 03:16:34,920 CONCENTRATE SO MUCH FUNDING IN A 3994 03:16:34,920 --> 03:16:42,160 SMALL GROUP OF PEOPLE. 3995 03:16:42,160 --> 03:16:46,040 WE CAN SAY ANYONE WHO RECEIVES 3996 03:16:46,040 --> 03:16:47,480 $1 MILLION IN TOTAL COSTS WOULD 3997 03:16:47,480 --> 03:16:49,080 BE A WELL-FUNDED INVESTIGATOR 3998 03:16:49,080 --> 03:16:50,840 AND THEIR NEW APPLICATIONS WOULD 3999 03:16:50,840 --> 03:16:53,400 HAVE TO GO TO SPECIAL COUNCIL 4000 03:16:53,400 --> 03:16:53,840 REVIEW. 4001 03:16:53,840 --> 03:16:58,960 THAT'S ONE POSSIBILITY. 4002 03:16:58,960 --> 03:17:00,280 ANOTHER POSSIBILITY WOULD BE TO 4003 03:17:00,280 --> 03:17:02,960 LOWER THE PAY LINE FOR SUCH 4004 03:17:02,960 --> 03:17:03,840 INDIVIDUALS. 4005 03:17:03,840 --> 03:17:05,240 IF YOU'RE WELL FUNDED YOUR 4006 03:17:05,240 --> 03:17:08,320 APPLICATION WOULD HAVE TO ASSUME 4007 03:17:08,320 --> 03:17:11,560 BETTER THAN 10 PERCENTILE, FIFTH 4008 03:17:11,560 --> 03:17:12,160 PERCENTILE OR SOMETHING TO BE 4009 03:17:12,160 --> 03:17:16,560 CONSIDERED. 4010 03:17:16,560 --> 03:17:18,160 WE COULD TAKE STEPS TO REDUCE 4011 03:17:18,160 --> 03:17:20,320 THE NUMBER OF APPLICATIONS 4012 03:17:20,320 --> 03:17:23,320 COMING FROM WELL-FUNDED 4013 03:17:23,320 --> 03:17:25,080 INVESTIGATORS BY SIMPLY 4014 03:17:25,080 --> 03:17:26,320 REQUIRING A HIGHER EFFORT LEVEL 4015 03:17:26,320 --> 03:17:28,120 ON SUCH APPLICATIONS AND IN THE 4016 03:17:28,120 --> 03:17:30,960 END THERE'S ONLY SO MANY GRANT 4017 03:17:30,960 --> 03:17:32,480 APPLICATIONS IN WHICH YOU CAN 4018 03:17:32,480 --> 03:17:38,160 HAVE 20% EFFORT BEFORE YOU RUN 4019 03:17:38,160 --> 03:17:38,600 OUT. 4020 03:17:38,600 --> 03:17:40,520 AND SOMETHING ELSE WOULD BE TO 4021 03:17:40,520 --> 03:17:42,440 CLOSE THE OTHER LOOPHOLES. 4022 03:17:42,440 --> 03:17:46,960 I'LL TALK A LITTLE BIT MORE 4023 03:17:46,960 --> 03:17:52,400 ABOUT THAT IN A MOMENT. 4024 03:17:52,400 --> 03:17:54,960 HERE'S WHAT OTHER INSTITUTE 4025 03:17:54,960 --> 03:17:56,200 COLLEAGUES ARE DOING. 4026 03:17:56,200 --> 03:17:58,960 THE THEY HAVE LOOKED AT SAY 4027 03:17:58,960 --> 03:18:07,680 WHOLE PROGRAM. 4028 03:18:07,680 --> 03:18:09,920 THEY MOVED TO AN INVESTIGATOR 4029 03:18:09,920 --> 03:18:15,320 POLICY THAT LOOKED AT NIH 4030 03:18:15,320 --> 03:18:22,160 FUNDING NOT -- NINDS HAS ADOPTED 4031 03:18:22,160 --> 03:18:27,280 A LOWER PAY LINE AND A THRESHOLD 4032 03:18:27,280 --> 03:18:31,040 FOR INVESTIGATORS AND HIGHER 4033 03:18:31,040 --> 03:18:31,840 MINIMUM EFFORT AS WELL AS 4034 03:18:31,840 --> 03:18:36,720 INCLUDING CHANGING SOME OF THE 4035 03:18:36,720 --> 03:18:38,960 RULES SO THAT THEY'RE A 4036 03:18:38,960 --> 03:18:41,480 WELL-FUNDED INVESTIGATOR IS ONE 4037 03:18:41,480 --> 03:18:44,680 OF SEVERAL INVESTIGATORS ON 4038 03:18:44,680 --> 03:18:48,840 APPLICATIONS WE WILL NEVER THE 4039 03:18:48,840 --> 03:18:51,720 LESS GET MORE SCRUTINY TO THAT 4040 03:18:51,720 --> 03:18:52,360 APPLICATION. 4041 03:18:52,360 --> 03:18:53,840 AT THIS MOMENT THEY'D ORDINARILY 4042 03:18:53,840 --> 03:18:57,560 BE EXEMPT IF I HAD ONE 4043 03:18:57,560 --> 03:18:58,600 WELL-FUNDED INVESTIGATOR AND THE 4044 03:18:58,600 --> 03:19:01,640 OTHER INVESTIGATOR IS NOT WELL 4045 03:19:01,640 --> 03:19:02,960 FUNDED WE DON'T CONSIDER THAT 4046 03:19:02,960 --> 03:19:04,440 FOR SPECIAL COUNCIL REVIEW. 4047 03:19:04,440 --> 03:19:06,160 IT'S JUST A REGULAR APPLICATION. 4048 03:19:06,160 --> 03:19:13,200 THEY'VE CHANGED THAT RULE. 4049 03:19:13,200 --> 03:19:15,880 NIM HAS MADE A LOWER PAY LINE 4050 03:19:15,880 --> 03:19:18,280 AND TRYING TO INSIST ON HIGHER 4051 03:19:18,280 --> 03:19:22,800 MINIMUM EFFORT.H HAS MADE A LOW 4052 03:19:22,800 --> 03:19:23,440 AND TRYING TO INSIST ON HIGHER 4053 03:19:23,440 --> 03:19:24,440 MINIMUM EFFORT. 4054 03:19:24,440 --> 03:19:26,040 THIS IS WHAT WE'RE PROPOSING AND 4055 03:19:26,040 --> 03:19:28,120 FOR YOU TO CONSIDER AND HOPE 4056 03:19:28,120 --> 03:19:30,200 WE'LL HAVE A DISCUSSION ABOUT 4057 03:19:30,200 --> 03:19:35,160 THIS. 4058 03:19:35,160 --> 03:19:37,440 WE'RE PROPOSING THAT A WELL 4059 03:19:37,440 --> 03:19:38,960 FUNDED INVESTIGATOR WHO ALREADY 4060 03:19:38,960 --> 03:19:41,840 HAS $2 MILLION IN TOTAL COSTS 4061 03:19:41,840 --> 03:19:44,880 FROM NIH FUNDING, THAT THEY ONLY 4062 03:19:44,880 --> 03:19:49,040 BE EVEN CONSIDERED FOR FUNDING 4063 03:19:49,040 --> 03:19:52,320 AND BROUGHT TO COUNCIL FOR 4064 03:19:52,320 --> 03:19:53,320 CONSIDERATION IF THEY MEET ONE 4065 03:19:53,320 --> 03:19:59,400 OF THE FOLLOWING TWO CRITERIA. 4066 03:19:59,400 --> 03:20:02,360 EITHER IT'S AN OUTSTANDING SCORE 4067 03:20:02,360 --> 03:20:08,720 OR LESS THAN SIX PERCENTILE, OR 4068 03:20:08,720 --> 03:20:11,200 IT REPRESENTS AN NICHD PRIORITY 4069 03:20:11,200 --> 03:20:16,880 AREA WE'VE ARTICULATED IN OUR 4070 03:20:16,880 --> 03:20:19,080 STRATEGIC PLAN, OR THE 4071 03:20:19,080 --> 03:20:21,920 INVESTIGATOR AND THE TEAM THEY 4072 03:20:21,920 --> 03:20:23,840 ASSEMBLED HAS THE EFFECT OF 4073 03:20:23,840 --> 03:20:25,040 MARKLY AND DISTINCTLY ENHANCING 4074 03:20:25,040 --> 03:20:35,360 WORKFORCE DIVERSITY. 4075 03:20:44,400 --> 03:20:49,840 SO THE APPLICATION COMES IN WE 4076 03:20:49,840 --> 03:20:55,680 REQUIRE A MINIMUM 20% EFFORT IN 4077 03:20:55,680 --> 03:20:56,480 THE APPLICATION AND THEY 4078 03:20:56,480 --> 03:20:57,600 TRANSITION FROM THEIR 4079 03:20:57,600 --> 03:20:58,920 WELL-FUNDED STATUS WITHIN A 4080 03:20:58,920 --> 03:21:09,040 YEAR. 4081 03:21:15,240 --> 03:21:16,760 FINALLY, CLOSE A MAJOR LOOPHOLE 4082 03:21:16,760 --> 03:21:18,840 AND I EXPLAINED IF AN 4083 03:21:18,840 --> 03:21:22,800 APPLICATION COMES IN FROM A 4084 03:21:22,800 --> 03:21:23,960 WELL-FUNDED INVESTIGATOR AND 4085 03:21:23,960 --> 03:21:26,720 PART OF A MULTIPLE INVESTIGATOR 4086 03:21:26,720 --> 03:21:34,920 TEAM WE ONLY LOOK AT IT AS A 4087 03:21:34,920 --> 03:21:41,560 WELL-FUNDED PROJECT IF ALL THE 4088 03:21:41,560 --> 03:21:51,760 INVESTIGATORS ARE IN THAT AND WE 4089 03:21:51,760 --> 03:21:53,800 FOUND 95% OF APPLICATIONS ARE 4090 03:21:53,800 --> 03:21:57,200 FROM WELL-FUNDED P.I.s WE'RE 4091 03:21:57,200 --> 03:21:58,440 PROPOSING TO CLOSE THAT LOOPHOLE 4092 03:21:58,440 --> 03:22:04,520 AND IF THEY COME IN WITH AN 4093 03:22:04,520 --> 03:22:05,960 APPLICATION AS ONE OF SINGLE 4094 03:22:05,960 --> 03:22:07,520 DIGITER THAT IS SEVERAL 4095 03:22:07,520 --> 03:22:08,280 NEVERTHELESS PUT IT INTO THE 4096 03:22:08,280 --> 03:22:11,880 BUCKET OF WELL-FUNDED 4097 03:22:11,880 --> 03:22:14,960 INVESTIGATOR APPLICATIONS. 4098 03:22:14,960 --> 03:22:24,200 SO THAT'S OUR PROPOSAL. 4099 03:22:24,200 --> 03:22:28,200 MOVING ELIGIBILITY CRITERIA AND 4100 03:22:28,200 --> 03:22:30,120 WE INCREASE OUR DEFINITION OF 4101 03:22:30,120 --> 03:22:33,480 WELL-FUNDED INVESTIGATORS TO 4102 03:22:33,480 --> 03:22:34,920 INCLUDE WHEN THEY ARE ALONG 4103 03:22:34,920 --> 03:22:36,320 SEVERAL MULTIPLE P.I.s ON AN 4104 03:22:36,320 --> 03:22:42,640 APPLICATION . 4105 03:22:42,640 --> 03:22:44,960 THIS IS WHAT WE'RE PROPOSING AND 4106 03:22:44,960 --> 03:22:45,600 I'M EAGER TO HEAR YOUR THOUGHTS 4107 03:22:45,600 --> 03:22:55,760 ON THIS. 4108 03:23:07,520 --> 03:23:10,440 >> THE $2 MILLION IS $2 MILLION 4109 03:23:10,440 --> 03:23:12,080 DIRECT PLUS INDIRECT? 4110 03:23:12,080 --> 03:23:13,120 >> PLUS INDIRECT. 4111 03:23:13,120 --> 03:23:13,800 >> OKAY. 4112 03:23:13,800 --> 03:23:15,320 AND I HAVE ANOTHER QUESTION. 4113 03:23:15,320 --> 03:23:17,280 I FEEL LIKE OVER THE PAST TWO 4114 03:23:17,280 --> 03:23:18,840 PLUS YEARS I'VE BEEN ON THE 4115 03:23:18,840 --> 03:23:23,960 COUNCIL WE'VE HAD A FEW OF THESE 4116 03:23:23,960 --> 03:23:26,440 AND THEY ALWAYS SEEM TO PASS. 4117 03:23:26,440 --> 03:23:29,200 I'VE NEVER SEEN ONE THAT DOESN'T 4118 03:23:29,200 --> 03:23:29,400 PASS. 4119 03:23:29,400 --> 03:23:31,240 I'M WONDERING WHICH MEANS THE 4120 03:23:31,240 --> 03:23:31,840 RULES DON'T MATTER SO MUCH 4121 03:23:31,840 --> 03:23:33,360 BECAUSE WE ALWAYS AS A COUNCIL 4122 03:23:33,360 --> 03:23:35,640 SEEM TO PASS THEM ANYWAY. 4123 03:23:35,640 --> 03:23:36,600 ARE THERE THINGS THAT PROGRAM 4124 03:23:36,600 --> 03:23:38,960 ARE NOT BRINGING TO US THAT THEY 4125 03:23:38,960 --> 03:23:41,680 HAVE RULED OUT THEY DON'T WANT 4126 03:23:41,680 --> 03:23:48,240 TO TRY AND PASS WITH US? 4127 03:23:48,240 --> 03:23:56,160 >> YES. 4128 03:23:56,160 --> 03:24:00,200 >> I'M WONDERING IF IT'S WISE TO 4129 03:24:00,200 --> 03:24:04,480 PROPOSE ALL OF THEM AS ONCE AND 4130 03:24:04,480 --> 03:24:06,200 95% AREN'T BEING CONSIDERED TO 4131 03:24:06,200 --> 03:24:10,360 COME TO COUNCIL AND IMPLEMENT 4132 03:24:10,360 --> 03:24:14,440 EACH OF THE IN A TIME SERIES TO 4133 03:24:14,440 --> 03:24:16,280 SEE WHAT AFFECT EACH ONE HAS 4134 03:24:16,280 --> 03:24:17,840 VERSUS ALTOGETHER AT THE SAME 4135 03:24:17,840 --> 03:24:18,200 TIME. 4136 03:24:18,200 --> 03:24:20,720 >> THAT IS ALSO A GOOD 4137 03:24:20,720 --> 03:24:21,760 SUGGESTION. 4138 03:24:21,760 --> 03:24:25,240 I SHOULD SAY TO YOUR POINT ABOUT 4139 03:24:25,240 --> 03:24:27,080 WORKING ON THESE CONSIDERATIONS 4140 03:24:27,080 --> 03:24:30,400 THAT ONCE WE GET TO THE OTHER 4141 03:24:30,400 --> 03:24:30,880 95%, THAT'S A LOT OF 4142 03:24:30,880 --> 03:24:41,120 APPLICATIONS. 4143 03:24:46,280 --> 03:24:48,280 >> DR. WONG. 4144 03:24:48,280 --> 03:24:53,520 >> YOU SAID 1 MILLION OR $2 4145 03:24:53,520 --> 03:24:54,480 MILLION IS THAT TOTAL? 4146 03:24:54,480 --> 03:24:57,120 >> WHEN WE DO THE CALCULATION, 4147 03:24:57,120 --> 03:24:59,880 AND FORTUNATELY WE DON'T 4148 03:24:59,880 --> 03:25:05,600 ACTUALLY DO THE CALCULATION, 4149 03:25:05,600 --> 03:25:08,720 IT'S AN ALGORITHM BUILT IN OUR 4150 03:25:08,720 --> 03:25:10,000 SYSTEM AND LOOK AT THE SUPPORT 4151 03:25:10,000 --> 03:25:13,040 OF THE INVESTIGATOR IN A YEAR. 4152 03:25:13,040 --> 03:25:14,600 >> IN A YEAR. 4153 03:25:14,600 --> 03:25:14,840 THANK YOU. 4154 03:25:14,840 --> 03:25:19,760 AND JUST TO CLARIFY, YOU ARE 4155 03:25:19,760 --> 03:25:21,680 SAYING THAT YOU'RE PROPOSING TO 4156 03:25:21,680 --> 03:25:22,440 INCLUDE ONLY THE RESEARCH 4157 03:25:22,440 --> 03:25:23,320 PROJECT GRANTS OR ALSO THE 4158 03:25:23,320 --> 03:25:28,520 RESOURCE GRANTS? 4159 03:25:28,520 --> 03:25:30,240 >> ONLY RESEARCH PROJECT. 4160 03:25:30,240 --> 03:25:34,320 >> ONLY RESEARCH. 4161 03:25:34,320 --> 03:25:34,560 THANK YOU. 4162 03:25:34,560 --> 03:25:36,440 >> DR. TITA. 4163 03:25:36,440 --> 03:25:38,960 >> THANK YOU FOR THAT 4164 03:25:38,960 --> 03:25:39,960 PRESENTATION. 4165 03:25:39,960 --> 03:25:42,240 I TOTALLY UNDERSTAND THE NEED TO 4166 03:25:42,240 --> 03:25:51,680 DO THIS. 4167 03:25:51,680 --> 03:25:53,520 AND GET MORE FUNDED. 4168 03:25:53,520 --> 03:25:58,720 HAS THERE BEEN A SYSTEMATIC 4169 03:25:58,720 --> 03:26:01,520 REVIEW TO SHOW THE SPECIAL 4170 03:26:01,520 --> 03:26:03,600 COUNCIL REVIEW HELPS? 4171 03:26:03,600 --> 03:26:11,760 IT MAY BE IT HOLDS A FEW LARGE 4172 03:26:11,760 --> 03:26:13,680 GRANT FUNDED DOES IT HELP THE 4173 03:26:13,680 --> 03:26:14,960 PROCESS TO GET MORE FUNDING OUT 4174 03:26:14,960 --> 03:26:17,840 TO OTHERS? 4175 03:26:17,840 --> 03:26:22,760 AND THEN I ALSO WORRY ABOUT 4176 03:26:22,760 --> 03:26:24,240 GOING FOR MULTIPLE P.I. 4177 03:26:24,240 --> 03:26:29,400 MECHANISM THAT IS SUPPOSED TO 4178 03:26:29,400 --> 03:26:32,040 PROMOTE TIM SCIENCE AND SOMEONE 4179 03:26:32,040 --> 03:26:35,640 MAY BE WELL FUND ED AND WORKING 4180 03:26:35,640 --> 03:26:37,880 TO GET IMPORTANT WORK DONE AND 4181 03:26:37,880 --> 03:26:41,280 RAISING THAT BAR AS WELL NOT 4182 03:26:41,280 --> 03:26:43,160 JUST LIKE REQUIRING A LOWER 4183 03:26:43,160 --> 03:26:44,160 SCORE OR A HIGHER SCORE 4184 03:26:44,160 --> 03:26:52,400 DEPENDING ON HOW YOU LOOK AT IT. 4185 03:26:52,400 --> 03:26:54,440 DOES IT ULTIMATELY NEGATIVELY 4186 03:26:54,440 --> 03:26:59,280 AFFECT THE TEAM SCIENCE? 4187 03:26:59,280 --> 03:27:02,760 I WONDER IF THERE'S A WAY TO 4188 03:27:02,760 --> 03:27:03,640 OBJECTIVELY EVALUATE THIS TYPE 4189 03:27:03,640 --> 03:27:06,320 OF INITIATIVE. 4190 03:27:06,320 --> 03:27:07,720 THANK YOU. 4191 03:27:07,720 --> 03:27:11,960 >> THANK YOU FOR RAISING THAT 4192 03:27:11,960 --> 03:27:13,520 POINT. 4193 03:27:13,520 --> 03:27:15,680 SOME OF THE COMMENTS AROUND THE 4194 03:27:15,680 --> 03:27:17,920 POTENTIAL UNINTENDED 4195 03:27:17,920 --> 03:27:22,200 CONSEQUENCES ON THE MPI SIDE OF 4196 03:27:22,200 --> 03:27:26,040 THINGS WHERE ESSENTIALLY THERE'S 4197 03:27:26,040 --> 03:27:29,440 A DISINCENTIVE FOR P.I.s TO 4198 03:27:29,440 --> 03:27:33,080 ESSENTIALLY CREATE CERTAIN MPIs 4199 03:27:33,080 --> 03:27:34,560 OR POTENTIALLY LIMIT WHAT 4200 03:27:34,560 --> 03:27:36,240 INVARIABLY HAPPENS IS 4201 03:27:36,240 --> 03:27:38,960 COMBINATIONS OF P.I.s WHERE ONE 4202 03:27:38,960 --> 03:27:41,920 OR THE P.I. IS THE HUB P.I. AND 4203 03:27:41,920 --> 03:27:44,760 THEY MAY BE WELL ESTABLISHED AND 4204 03:27:44,760 --> 03:27:46,360 PROVIDE RESOURCES FROM OTHER 4205 03:27:46,360 --> 03:27:49,200 P.I.s THAT BRING EXPERTISE OR 4206 03:27:49,200 --> 03:27:49,600 RESOURCES. 4207 03:27:49,600 --> 03:27:51,120 IN SOME RESPECT YOU LIMIT THE 4208 03:27:51,120 --> 03:27:52,640 POTENTIAL FOR THE OTHER P.I.s 4209 03:27:52,640 --> 03:27:55,480 WHO MAY NOT BE ABLE TO SORT OF 4210 03:27:55,480 --> 03:27:58,960 OBTAIN A GRANT INDEPENDENTLY OR 4211 03:27:58,960 --> 03:28:00,640 POTENTIALLY DESIGNATING REDUCING 4212 03:28:00,640 --> 03:28:03,680 THE OWNERSHIP INSTEAD OF MPI 4213 03:28:03,680 --> 03:28:06,280 THEY'LL BE CO-INVESTIGATORS OR 4214 03:28:06,280 --> 03:28:07,520 SOMETHING ALONG THOSE LINES OF 4215 03:28:07,520 --> 03:28:13,040 P.I.s YOU WANT TO HAVE EFFORT 4216 03:28:13,040 --> 03:28:15,520 ADDRESSED AND THE OTHER PART 4217 03:28:15,520 --> 03:28:20,000 THAT SEEMS IS ALSO I'M WONDERING 4218 03:28:20,000 --> 03:28:22,960 IS CONSIDERED IS THERE'S A WIDE 4219 03:28:22,960 --> 03:28:28,160 RANGE OF INDIRECT COSTS ACROSS 4220 03:28:28,160 --> 03:28:29,440 DESTINATIONS. 4221 03:28:29,440 --> 03:28:33,440 YOU MAY INADVERTENTLY HAVE 4222 03:28:33,440 --> 03:28:34,960 AFFECTS AT SOME INSTITUTIONS 4223 03:28:34,960 --> 03:28:38,240 VERSES OTHERS IN THE SETTING. 4224 03:28:38,240 --> 03:28:39,280 RECOGNIZING THERE'S PROBABLY 4225 03:28:39,280 --> 03:28:41,280 SOME CORRELATION BETWEEN 4226 03:28:41,280 --> 03:28:43,080 INSTITUTIONS THAT HAVE HIGH FNA 4227 03:28:43,080 --> 03:28:45,240 RATES AND FUNDED INVESTIGATORS. 4228 03:28:45,240 --> 03:28:49,480 I WONDER IF THAT MIGHT BE ALSO 4229 03:28:49,480 --> 03:28:50,280 UNINTENDED DISPARITY TO THE 4230 03:28:50,280 --> 03:28:52,080 P.I.s WHO THEMSELVES DON'T GET 4231 03:28:52,080 --> 03:28:54,680 TO CONTROL NECESSARILY THE 4232 03:28:54,680 --> 03:28:55,160 INDIRECT RATES OF THEIR 4233 03:28:55,160 --> 03:28:57,200 INSTITUTIONS. 4234 03:28:57,200 --> 03:29:01,160 AND THIRD, THE QUESTION AROUND 4235 03:29:01,160 --> 03:29:04,280 THE TRANSITIONING -- I WONDER IF 4236 03:29:04,280 --> 03:29:06,240 THERE'S A RISK WITH THE SHORT 4237 03:29:06,240 --> 03:29:08,160 TIME LINE ON THE PROGRAMS THAT 4238 03:29:08,160 --> 03:29:16,080 THEY'RE TRANSITIONING FROM. 4239 03:29:16,080 --> 03:29:18,320 MEANING WHAT ARE CONTRIBUTIONS 4240 03:29:18,320 --> 03:29:21,120 AROUND THE TIME LINES AND 4241 03:29:21,120 --> 03:29:22,640 AFFECTS IT MAY HAVE ON PROGRAMS 4242 03:29:22,640 --> 03:29:23,280 THEY'RE FUNDED ON WHEN THERE'S 4243 03:29:23,280 --> 03:29:31,600 ONLY ONE YEAR? 4244 03:29:31,600 --> 03:29:32,880 SCIENCE TYPICALLY TAKES A LONGER 4245 03:29:32,880 --> 03:29:41,880 TIME COURSE THAN A YEAR. 4246 03:29:41,880 --> 03:29:44,320 I WONDER IF IT MIGHT AMPUTATE 4247 03:29:44,320 --> 03:29:47,680 SOME PROGRAMS PREMATURELY FOR 4248 03:29:47,680 --> 03:29:48,000 INVESTIGATORS. 4249 03:29:48,000 --> 03:29:48,680 THOSE ARE JUST SOME THOUGHTS OR 4250 03:29:48,680 --> 03:29:52,600 QUESTIONS. 4251 03:29:52,600 --> 03:29:58,480 >> THESE ARE EXCELLENT POINTS. 4252 03:29:58,480 --> 03:30:00,360 I WANT TO SAY ONE THING. 4253 03:30:00,360 --> 03:30:05,400 WHEN WE GET A MULTIPLE P.I. 4254 03:30:05,400 --> 03:30:06,800 APPLICATION THE ALGORITHM 4255 03:30:06,800 --> 03:30:08,000 APPORTIONS THE FUNDS. 4256 03:30:08,000 --> 03:30:11,640 IF IT'S A $2 MILLION GRANT WITH 4257 03:30:11,640 --> 03:30:14,960 THREE P.I.s, EACH ONE GETS 4258 03:30:14,960 --> 03:30:16,440 CHARGED $2 MILLION EACH ONE GETS 4259 03:30:16,440 --> 03:30:18,960 CHARGED ABOUT A THIRD OF THAT 4260 03:30:18,960 --> 03:30:21,000 AND IF IT'S A GRANT WITH 4261 03:30:21,000 --> 03:30:22,960 MULTIPLE PROJECTS, THEN IT WOULD 4262 03:30:22,960 --> 03:30:24,320 BE A PROPORTION. 4263 03:30:24,320 --> 03:30:26,120 I DID WANT TO MAKE THAT ONE 4264 03:30:26,120 --> 03:30:26,640 SMALL POINT. 4265 03:30:26,640 --> 03:30:27,000 >> IT'S HELPFUL. 4266 03:30:27,000 --> 03:30:33,120 THANKS. 4267 03:30:33,120 --> 03:30:35,600 >> DR. FAIR. 4268 03:30:35,600 --> 03:30:36,680 >> YEAH, I'VE BEEN THINKING 4269 03:30:36,680 --> 03:30:47,240 ABOUT THIS PROBLEM FOR A WHILE. 4270 03:30:51,240 --> 03:30:53,320 SOMETIMES THE WAY THE SYSTEM IS 4271 03:30:53,320 --> 03:30:55,600 SET UP MAKES IT HARD FOR SOME 4272 03:30:55,600 --> 03:30:56,520 INVESTIGATORS AND THERE'S A CUL 4273 03:30:56,520 --> 03:30:59,200 TIRE IN OUR STUDY SECTIONS -- 4274 03:30:59,200 --> 03:31:00,800 CULTURE IN OUR STUDY SECTIONS 4275 03:31:00,800 --> 03:31:06,000 THAT LOVE SENIOR INVESTIGATORS 4276 03:31:06,000 --> 03:31:12,320 SO IT HELPS ME GET GRANTS FOR 4277 03:31:12,320 --> 03:31:13,280 YOUNG INVESTIGATORS BECAUSE 4278 03:31:13,280 --> 03:31:18,600 THAT'S THE CULTURE AND REALITY. 4279 03:31:18,600 --> 03:31:29,120 I LOVE THE IDEA BUT WHAT'S THE 4280 03:31:30,400 --> 03:31:35,720 CONSEQUENCE IN THE CURRENT 4281 03:31:35,720 --> 03:31:35,920 CULTURE. 4282 03:31:35,920 --> 03:31:39,200 I LIKE THE CARROTS AND WHETHER 4283 03:31:39,200 --> 03:31:40,640 YOU CAN QUANTIFY THIS WHEN YOU 4284 03:31:40,640 --> 03:31:45,600 COME TO COUNCIL. 4285 03:31:45,600 --> 03:31:56,080 YOU TALK ABOUT LIKE IF 50% OF 4286 03:32:05,640 --> 03:32:07,640 STAFF IS UNDER REPRESENTED YOU 4287 03:32:07,640 --> 03:32:12,560 GET TREATED LIKE EVERYBODY ELSE. 4288 03:32:12,560 --> 03:32:22,000 THIS IS A POTENTIAL OPPORTUNITY 4289 03:32:22,000 --> 03:32:23,520 TO PUSH WHAT WE TALK ABOUT 4290 03:32:23,520 --> 03:32:24,440 BECAUSE THERE'S A HUGE INCENTIVE 4291 03:32:24,440 --> 03:32:25,840 FOR THAT. 4292 03:32:25,840 --> 03:32:29,320 I DON'T KNOW WHAT'S POSSIBLE BUT 4293 03:32:29,320 --> 03:32:32,960 THAT PART OF THE PLAN IS WHAT I 4294 03:32:32,960 --> 03:32:33,960 LATCHED ON TO RIGHT AWAY BECAUSE 4295 03:32:33,960 --> 03:32:37,800 IT HAS SIGNIFICANT POWER TO KILL 4296 03:32:37,800 --> 03:32:38,920 A MULTIPLE OF BIRDS WITH ONE 4297 03:32:38,920 --> 03:32:49,360 STONE IF YOU DO IT RIGHT. 4298 03:32:57,280 --> 03:32:59,880 >> I HEARD IN PAST COUNCILS THE 4299 03:32:59,880 --> 03:33:00,840 COMMENT ABOUT THOSE WHO HAVE 4300 03:33:00,840 --> 03:33:05,320 MORE, GET MORE AND IT BECOMES 4301 03:33:05,320 --> 03:33:06,360 PERPETUATING THAT WAY AND WAS 4302 03:33:06,360 --> 03:33:14,680 THINKING ABOUT THE IDEA OF DEI 4303 03:33:14,680 --> 03:33:17,560 AND HAVING A METRIC IN THERE SO 4304 03:33:17,560 --> 03:33:21,440 A PERSON CAN ACTIVELY 4305 03:33:21,440 --> 03:33:23,120 DEMONSTRATE YOU ARE DIVERSE 4306 03:33:23,120 --> 03:33:24,360 TYING YOUR TEAM. 4307 03:33:24,360 --> 03:33:26,240 -- DIVERSIFYING TEAM AND WITH 4308 03:33:26,240 --> 03:33:27,800 THE 3% EFFORT AND MAYBE YOU SAID 4309 03:33:27,800 --> 03:33:32,320 THIS OR MAYBE I MISSED ON THIS, 4310 03:33:32,320 --> 03:33:34,640 ARE WE TALKING ABOUT AN 4311 03:33:34,640 --> 03:33:36,360 INVESTIGATOR WHERE THERE'S SCANT 4312 03:33:36,360 --> 03:33:41,240 5% OR LESS OF VERY LOW EFFORT ON 4313 03:33:41,240 --> 03:33:47,480 ACROSS AWARDS AND SO ONE WONDERS 4314 03:33:47,480 --> 03:33:50,080 GIVEN THE IDEA, THE SPARK OF 4315 03:33:50,080 --> 03:33:53,560 WHAT THE RESEARCH IS BUT WHAT 4316 03:33:53,560 --> 03:33:54,960 ADDITIONALLY IS THE INVESTIGATOR 4317 03:33:54,960 --> 03:33:58,960 IN ADDITION TO THEIR NAME AND 4318 03:33:58,960 --> 03:34:02,600 REPUTATION, GIVING TO THE ACTUAL 4319 03:34:02,600 --> 03:34:09,440 WORK ARE WE TALKING ABOUT 4320 03:34:09,440 --> 03:34:11,920 GETTING UP TO 5% BECAUSE IT'S SO 4321 03:34:11,920 --> 03:34:14,440 LOW OR UP TO 10%? 4322 03:34:14,440 --> 03:34:16,320 I'M WONDERING ALOUD ABOUT THE 4323 03:34:16,320 --> 03:34:17,080 PERCENT EFFORT INCREASE WHERE 4324 03:34:17,080 --> 03:34:18,760 WE'RE STARTING FROM ON GETTING 4325 03:34:18,760 --> 03:34:28,280 IT UP TO SOMETHING. 4326 03:34:28,280 --> 03:34:30,000 WHEN THE GRANT IS AWARDED 4327 03:34:30,000 --> 03:34:32,080 THEY'LL HAVE TO ESTABLISH THE 4328 03:34:32,080 --> 03:34:33,920 PERCENT EFFORT ON THE NEW GRANT. 4329 03:34:33,920 --> 03:34:37,440 >> I WOULD IMAGINE YOU'RE NOT 4330 03:34:37,440 --> 03:34:38,960 SEEING ANYTHING CLOSE TO THAT AT 4331 03:34:38,960 --> 03:34:42,360 ALL. 4332 03:34:42,360 --> 03:34:44,360 THE 20% -- 4333 03:34:44,360 --> 03:34:46,160 >> IT'S ACROSS THE SPECTRUM. 4334 03:34:46,160 --> 03:34:47,960 >> AND THE IDEA OF JUSTIFYING 4335 03:34:47,960 --> 03:34:50,680 WHAT YOU'LL DO IN RELATION TO 4336 03:34:50,680 --> 03:34:52,640 THE CONDUCTS ABOUT THAT SCIENCE, 4337 03:34:52,640 --> 03:34:54,840 THAT IN FACT REPRESENTS 20% 4338 03:34:54,840 --> 03:34:57,440 EFFORT FROM YOU KNOWING THAT 4339 03:34:57,440 --> 03:34:58,520 THEY'RE WORKING WITH PRETTY 4340 03:34:58,520 --> 03:34:59,960 LARGE TEAMS, PROBABLY. 4341 03:34:59,960 --> 03:35:00,560 I'M THINKING ALOUD HERE WITH 4342 03:35:00,560 --> 03:35:10,520 THAT. 4343 03:35:10,520 --> 03:35:11,120 THOSE ARE SOME OF MY INITIAL 4344 03:35:11,120 --> 03:35:13,000 THOUGHTS. 4345 03:35:13,000 --> 03:35:13,280 >> DR. WONG. 4346 03:35:13,280 --> 03:35:16,680 >> THANK YOU. 4347 03:35:16,680 --> 03:35:19,280 I WANTED TO FOLLOW-UP ON THE 4348 03:35:19,280 --> 03:35:20,840 COMMENT BY DR. LANG AND RESNIK 4349 03:35:20,840 --> 03:35:23,920 THAT SOME OF THE PROPOSALS CAN 4350 03:35:23,920 --> 03:35:25,480 BE QUANTIFIED AND SEE WHAT WOULD 4351 03:35:25,480 --> 03:35:26,760 BE THE EFFECT. 4352 03:35:26,760 --> 03:35:28,880 WHAT WOULD BE THE IMPACT IF WE 4353 03:35:28,880 --> 03:35:30,640 IMPOSE THIS, THIS WOULD HAPPEN. 4354 03:35:30,640 --> 03:35:34,320 IF WE IMPOSE THAT, THAT WOULD 4355 03:35:34,320 --> 03:35:34,760 HAPPEN. 4356 03:35:34,760 --> 03:35:37,000 SO IN TRYING TO ASSESS THE 4357 03:35:37,000 --> 03:35:42,080 POSSIBLE IMPACT OF THESE CHANGES 4358 03:35:42,080 --> 03:35:44,640 IN PARTICULAR WHETHER THERE'S 4359 03:35:44,640 --> 03:35:45,560 SOME PROPOSAL THAT IS CONSIDERED 4360 03:35:45,560 --> 03:35:48,160 VALUABLE BY YOU ALL IN THE 4361 03:35:48,160 --> 03:35:52,680 PROGRAM WOULD BE RESULTING IN 4362 03:35:52,680 --> 03:35:53,680 NON-FUNDING, FOR EXAMPLE. 4363 03:35:53,680 --> 03:35:57,480 THAT IS WHAT IS OF CONCERN TO US 4364 03:35:57,480 --> 03:35:59,840 WHETHER THE WORD AMPUTATE WAS 4365 03:35:59,840 --> 03:36:02,920 USED. 4366 03:36:02,920 --> 03:36:04,040 PARTICULARLY GOOD SCIENCE WOULD 4367 03:36:04,040 --> 03:36:07,320 BE MISSED SOME NEW DISCOVERY. 4368 03:36:07,320 --> 03:36:08,600 SOMETHING THAT A SENIOR 4369 03:36:08,600 --> 03:36:11,440 PROFESSOR WITH A LARGE PROGRAM 4370 03:36:11,440 --> 03:36:13,760 IS ADVANCING AND LEADING LIKE 4371 03:36:13,760 --> 03:36:14,680 YOU WERE SAYING. 4372 03:36:14,680 --> 03:36:17,480 THIS IS AWARDED BY THE STUDY 4373 03:36:17,480 --> 03:36:19,600 SECTIONS AND THE SENIOR FACULTY 4374 03:36:19,600 --> 03:36:21,400 LEADING THE EFFORT AND WE KNOW 4375 03:36:21,400 --> 03:36:23,960 THIS IS GOING TO BE DONE. 4376 03:36:23,960 --> 03:36:25,880 AND THEY REWARD THAT A LOT. 4377 03:36:25,880 --> 03:36:27,840 THE EXPERIENCED INVESTIGATOR WHO 4378 03:36:27,840 --> 03:36:30,920 HAS CONDUCTED THIS WORK WILL BE 4379 03:36:30,920 --> 03:36:31,920 LEADING THE EFFORTS. 4380 03:36:31,920 --> 03:36:33,360 THIS IS A VERY GOOD PROPOSAL AND 4381 03:36:33,360 --> 03:36:35,720 WE KNOW THAT THIS IS GOING TO BE 4382 03:36:35,720 --> 03:36:36,400 DONE. 4383 03:36:36,400 --> 03:36:38,960 I'M SUPPORTING THE POINT THAT 4384 03:36:38,960 --> 03:36:40,640 PERHAPS WE PROBABLY WOULD NEED 4385 03:36:40,640 --> 03:36:42,520 TO CHANGE THE CULTURE OF THE 4386 03:36:42,520 --> 03:36:44,960 STUDY SECTION AND I'M SORRY, I 4387 03:36:44,960 --> 03:36:46,640 HAVE TWO MORE POINTS. 4388 03:36:46,640 --> 03:36:51,160 ONE HAS TO DO WITH THE PROPOSAL 4389 03:36:51,160 --> 03:36:54,680 TO EXCLUDE CERTAIN AWARDS. 4390 03:36:54,680 --> 03:37:01,840 AND SO I'M GOING SPEAK NOW AS A 4391 03:37:01,840 --> 03:37:04,520 P.I. AND HAS AN RO1 IN 4392 03:37:04,520 --> 03:37:06,120 POPULATION STUDIES WE DO WORK 4393 03:37:06,120 --> 03:37:12,200 WITH RO1s NOT U OR OTHERS IN 4394 03:37:12,200 --> 03:37:14,800 COLLECTING LARGE AMOUNTS OF DATA 4395 03:37:14,800 --> 03:37:18,400 THAT ARE THEN PUT UP FOR PUBLIC 4396 03:37:18,400 --> 03:37:20,400 VIEWS IN POPULATION STUDIES AND 4397 03:37:20,400 --> 03:37:22,960 HAVE NATIONAL SAMPLES AND 4398 03:37:22,960 --> 03:37:24,440 LONGITUDINAL STUDIES AND THOSE 4399 03:37:24,440 --> 03:37:29,240 ARE VERY EXPENSIVE GRANTS. 4400 03:37:29,240 --> 03:37:30,040 THEY'RE OURS. 4401 03:37:30,040 --> 03:37:34,400 WE HAVE TO CONDUCT THE STUDIES 4402 03:37:34,400 --> 03:37:35,520 AND AGAIN, THERE ARE RESOURCES 4403 03:37:35,520 --> 03:37:37,320 BECAUSE THE DATA'S PUBLIC. 4404 03:37:37,320 --> 03:37:39,720 IT'S NOT FOR OUR LAB OR OUR 4405 03:37:39,720 --> 03:37:43,640 UNIVERSITY, IT'S FOR THE PUBLIC. 4406 03:37:43,640 --> 03:37:45,720 FOR US WE SET IT UP FOR PUBLIC 4407 03:37:45,720 --> 03:37:50,320 USE AND SHARE THE DATA BUT IT'S 4408 03:37:50,320 --> 03:37:52,600 AN "R". 4409 03:37:52,600 --> 03:37:55,000 PERHAPS THE KIND OF GRANT OR 4410 03:37:55,000 --> 03:37:56,480 AWARD IT IS SHOULD BE CONSIDERED 4411 03:37:56,480 --> 03:37:59,840 IN THERE SO NOT ALL R01s ARE THE 4412 03:37:59,840 --> 03:38:03,440 SAME OR HAVE THE SAME IMPACT. 4413 03:38:03,440 --> 03:38:05,680 THAT'S WHY THE PRICE -- THE COST 4414 03:38:05,680 --> 03:38:06,360 GETS HIGHER. 4415 03:38:06,360 --> 03:38:09,840 THE OTHER THOUGHT I HAVE, SORRY 4416 03:38:09,840 --> 03:38:12,400 FOR TAKING SO LONG, I WAS 4417 03:38:12,400 --> 03:38:17,080 THINKING IN THE PUBLICATION 4418 03:38:17,080 --> 03:38:21,880 RECORDS WE HAVE WE TEND TO BE 4419 03:38:21,880 --> 03:38:24,200 FIRST AUTHORS AND THEN SENIOR 4420 03:38:24,200 --> 03:38:24,440 AUTHORS. 4421 03:38:24,440 --> 03:38:26,760 THE CULTURE OF PERHAPS IN THE 4422 03:38:26,760 --> 03:38:27,960 STUDY SECTIONS WOULD HAVE TO 4423 03:38:27,960 --> 03:38:30,360 CHANGE THAT I COULD BE THE 4424 03:38:30,360 --> 03:38:30,920 SENIOR INVESTIGATOR WITHOUT 4425 03:38:30,920 --> 03:38:40,960 BEING THE P.I. 4426 03:38:40,960 --> 03:38:42,360 AND THEN THE P.I.s THAT GO IN 4427 03:38:42,360 --> 03:38:44,040 FRONT ARE THE ONES I'M 4428 03:38:44,040 --> 03:38:45,200 SUPPORTING AND I'M SAYING THAT 4429 03:38:45,200 --> 03:38:47,840 I'M GOING TO BE FULLY INVESTED 4430 03:38:47,840 --> 03:38:50,320 IN THIS RESEARCH PROJECT BUT I'M 4431 03:38:50,320 --> 03:38:52,960 GOING TO BE THE SENIOR 4432 03:38:52,960 --> 03:38:54,960 INVESTIGATOR AS THE LAST SO SOME 4433 03:38:54,960 --> 03:38:56,520 THOUGHT HOW THE STUDY SECTION 4434 03:38:56,520 --> 03:38:57,760 WOULD CONSIDER, OKAY, SHE'S 4435 03:38:57,760 --> 03:39:00,400 GOING TO BE IN THERE AND GOING 4436 03:39:00,400 --> 03:39:02,600 TO BE FULLY SUPPORTED BUT SHE'S 4437 03:39:02,600 --> 03:39:05,120 NOT MENTIONING HER NAME AS P.I. 4438 03:39:05,120 --> 03:39:08,240 BECAUSE SHE'S PUSHING THE OTHERS 4439 03:39:08,240 --> 03:39:12,440 AND BEING THE FIRST AUTHORS, THE 4440 03:39:12,440 --> 03:39:14,720 EQUIVALENT OF THAT. 4441 03:39:14,720 --> 03:39:25,080 >> EXCELLENT POINT. 4442 03:39:34,520 --> 03:39:35,520 >> WE HAVE A NICE DISCUSSION 4443 03:39:35,520 --> 03:39:36,600 HERE BUT I THINK WE SHOULD 4444 03:39:36,600 --> 03:39:38,480 CONSIDER THE TEAMS. 4445 03:39:38,480 --> 03:39:42,440 PARTICULARLY FOR THESE MULTIPLE 4446 03:39:42,440 --> 03:39:47,240 P.I. GRANTS BECAUSE THERE'S 4447 03:39:47,240 --> 03:39:48,840 EVIDENCE THAT OPTIMIZING THE 4448 03:39:48,840 --> 03:39:52,240 TEAM WOULD LEAD TO MORE IMPACT 4449 03:39:52,240 --> 03:39:57,320 OF THE WORK. 4450 03:39:57,320 --> 03:39:59,920 NORMALLY WE HAVE A STATEMENT 4451 03:39:59,920 --> 03:40:01,960 ABOUT COLLABORATION AND THAT 4452 03:40:01,960 --> 03:40:03,720 COULD INCLUDE DIVERSITY. 4453 03:40:03,720 --> 03:40:10,200 THERE ARE MANY PHASES TO 4454 03:40:10,200 --> 03:40:15,880 OPTIMIZING THE TEAM LEVEL CAREER 4455 03:40:15,880 --> 03:40:18,440 DEVELOP AND ALL THAT AND THESE 4456 03:40:18,440 --> 03:40:22,320 ARE PEOPLE WITH LARGE SALARIES 4457 03:40:22,320 --> 03:40:24,480 AND IF YOU DO THAT IT'S GOING TO 4458 03:40:24,480 --> 03:40:27,000 BE HARD SOMETIMES HARD TO GET 4459 03:40:27,000 --> 03:40:37,560 THE WORK DONE WITHIN THE BUDGET. 4460 03:40:42,480 --> 03:40:44,360 SOMETIMES JUST INCREASING THE 4461 03:40:44,360 --> 03:40:53,880 EFFORT -- SOMETIMES I NEED TO 4462 03:40:53,880 --> 03:40:55,760 DECREASE YOUR EFFORT TO HIRE THE 4463 03:40:55,760 --> 03:40:56,360 OTHER PEOPLE YOU NEED ON YOUR 4464 03:40:56,360 --> 03:41:05,760 TEAM. 4465 03:41:05,760 --> 03:41:07,920 AND THE OTHER ASPECT IS LOOKING 4466 03:41:07,920 --> 03:41:09,480 AT THE STUDY SECTION. 4467 03:41:09,480 --> 03:41:20,040 WHY THE STUDY SECTIONS ARE NOT 4468 03:41:22,640 --> 03:41:25,080 TAKING THIS INTO MORE 4469 03:41:25,080 --> 03:41:25,760 CONSIDERATION. 4470 03:41:25,760 --> 03:41:26,840 THIS ASPECT. 4471 03:41:26,840 --> 03:41:28,600 I'M SURPRISED TO HEAR THE 4472 03:41:28,600 --> 03:41:30,720 DISCOUNT OF THAT -- WE HAVEN'T 4473 03:41:30,720 --> 03:41:33,440 HAD ANY REJECTIONS IN THE PAST 4474 03:41:33,440 --> 03:41:34,240 FOR THESE TYPE OF APPLICATIONS 4475 03:41:34,240 --> 03:41:41,400 HERE. 4476 03:41:41,400 --> 03:41:43,760 WE GET THE MINORITY RIGHT OF THE 4477 03:41:43,760 --> 03:41:46,440 APPLICATION AND I'D LIKE TO KNOW 4478 03:41:46,440 --> 03:41:48,000 MORE HOW MANY DON'T MAKE IT 4479 03:41:48,000 --> 03:41:48,360 HERE. 4480 03:41:48,360 --> 03:41:50,200 WHAT ARE THE PROPORTION OF 4481 03:41:50,200 --> 03:41:51,040 APPLICANTS IN THIS CONDITION 4482 03:41:51,040 --> 03:41:55,600 THAT WE GET HERE? 4483 03:41:55,600 --> 03:41:58,280 THEY'RE BEING ACCEPTED. 4484 03:41:58,280 --> 03:41:58,960 THANK YOU. 4485 03:41:58,960 --> 03:42:09,200 >> THANK YOU. 4486 03:42:11,640 --> 03:42:22,120 >> I JUST WANTED TO COME BACK TO 4487 03:42:37,320 --> 03:42:37,800 WHAT DR. FAIR SAID ABOUT 4488 03:42:37,800 --> 03:42:39,560 CULTURE. 4489 03:42:39,560 --> 03:42:42,440 BECAUSE I THINK CULTURE ON STUDY 4490 03:42:42,440 --> 03:42:45,200 SECTION IS A HUGE PART OF THIS. 4491 03:42:45,200 --> 03:42:47,560 BECAUSE THERE'S SO MUCH CREDIT 4492 03:42:47,560 --> 03:42:48,760 GIVEN TO SENIOR INVESTIGATORS 4493 03:42:48,760 --> 03:42:50,040 THAT I THINK WITHOUT ADDRESSING 4494 03:42:50,040 --> 03:42:54,400 THE CULTURE THAT THIS IS GOING 4495 03:42:54,400 --> 03:42:57,480 TO BE A MAJOR CHALLENGE AND I 4496 03:42:57,480 --> 03:43:00,440 ALSO WANTED TO ALSO AGREE WITH 4497 03:43:00,440 --> 03:43:01,600 THE COMMENTS ABOUT EFFORT. 4498 03:43:01,600 --> 03:43:04,440 I APPRECIATE WHAT THE GOAL IS 4499 03:43:04,440 --> 03:43:07,120 AND I THINK IT'S REALLY 4500 03:43:07,120 --> 03:43:09,280 IMPORTANT BUT A LOT OF TIMES 4501 03:43:09,280 --> 03:43:11,600 PEOPLE WHO HAVE A LOW EFFORT ARE 4502 03:43:11,600 --> 03:43:14,560 REALLY TRYING TO SAY SAVE BUDGET 4503 03:43:14,560 --> 03:43:16,160 TO BE ABLE TO PAY FOR STAFF AND 4504 03:43:16,160 --> 03:43:18,520 TRAINEES AND LEARNERS. 4505 03:43:18,520 --> 03:43:21,960 I THINK THAT COULD POTENTIALLY 4506 03:43:21,960 --> 03:43:22,960 CRIPPLE SOME PROGRAMS BECAUSE 4507 03:43:22,960 --> 03:43:26,960 THEY HAVE OTHER SOURCES FOR 4508 03:43:26,960 --> 03:43:28,840 THEIR SALARY WHICH ALLOWS THEM 4509 03:43:28,840 --> 03:43:30,400 TO DO THAT AND IT ACTUALLY MAKES 4510 03:43:30,400 --> 03:43:35,920 SENSE TO USE THE FUNDS WHERE THE 4511 03:43:35,920 --> 03:43:42,480 FUNDS ARE NEED ED I ALSO WANT T 4512 03:43:42,480 --> 03:43:43,720 GIVE A NOD TOWARDS DIVERSITY 4513 03:43:43,720 --> 03:43:46,000 CHALLENGE AND WHEN YOU SIT IN 4514 03:43:46,000 --> 03:43:48,280 STUDY SECTION AND THE QUESTION 4515 03:43:48,280 --> 03:43:50,920 AROUND DIVERSITY IS RAISED IS 4516 03:43:50,920 --> 03:43:57,120 ALWAYS WELL, THEY'LL DO IT. 4517 03:43:57,120 --> 03:44:01,520 THEY'LL GET IT DONE. 4518 03:44:01,520 --> 03:44:04,240 FROM MY PERSPECTIVE IT OFTEN 4519 03:44:04,240 --> 03:44:05,960 COMES BACK AND DOESN'T GET DONE 4520 03:44:05,960 --> 03:44:06,640 AND HAVING SOMETHING MORE 4521 03:44:06,640 --> 03:44:08,640 CONCRETE WOULD BE A GOOD THING 4522 03:44:08,640 --> 03:44:10,400 AND DIVERSITY IS MANY THINGS. 4523 03:44:10,400 --> 03:44:16,280 IT'S DISABILITIES, IT'S RACE, 4524 03:44:16,280 --> 03:44:17,880 IT'S SEX AND DEPENDING ON THE 4525 03:44:17,880 --> 03:44:25,280 NEEDS ON THAT KIND OF SYSTEM, WE 4526 03:44:25,280 --> 03:44:30,320 HAVE SOME STATEMENTS WITH HARD 4527 03:44:30,320 --> 03:44:38,640 NUMBERS WOULD GO A LONG WAY. 4528 03:44:38,640 --> 03:44:41,760 >> I DON'T THANK WE'RE GOING TO 4529 03:44:41,760 --> 03:44:43,680 CHANGE THE STUDY SECTION CULTURE 4530 03:44:43,680 --> 03:44:44,200 ON COUNCIL. 4531 03:44:44,200 --> 03:44:46,600 I DON'T THINK IT WILL HAPPEN 4532 03:44:46,600 --> 03:44:46,840 QUICKLY. 4533 03:44:46,840 --> 03:44:48,480 SECOND POINT IS I THINK IT WOULD 4534 03:44:48,480 --> 03:44:52,840 BE GOOD FOR COUNCIL TO REVIEW 4535 03:44:52,840 --> 03:44:58,960 ANY OF THESE APPLICATIONS THAT 4536 03:44:58,960 --> 03:45:00,760 HAVE A GRANT ABOVE A MILLION 4537 03:45:00,760 --> 03:45:02,960 DOLLARS WHEN THEY COME IN AND 4538 03:45:02,960 --> 03:45:04,800 THOUGH THE COMMENTS ARE TRUE 4539 03:45:04,800 --> 03:45:06,400 FROM CATHERINE AND PEPE WE 4540 03:45:06,400 --> 03:45:12,240 HAVEN'T NOT REVERSED ANY OF THEM 4541 03:45:12,240 --> 03:45:13,160 THAT'S BECAUSE THEY WERE ALL AT 4542 03:45:13,160 --> 03:45:15,040 THE LIMIT AND THEY WOULD TURN 4543 03:45:15,040 --> 03:45:17,840 OVER IN THE NEXT YEAR. 4544 03:45:17,840 --> 03:45:19,520 I THINK THEY'VE ALL BEEN WITHIN 4545 03:45:19,520 --> 03:45:22,880 GOOD PARAMETERS TO FUND THEM. 4546 03:45:22,880 --> 03:45:24,280 AND I DON'T HAVE ANY PROBLEM 4547 03:45:24,280 --> 03:45:26,040 WITH PASSING THEM THROUGH BUT I 4548 03:45:26,040 --> 03:45:27,760 THINK A GOOD DISCUSSION WOULD BE 4549 03:45:27,760 --> 03:45:29,520 HELPFUL AND I THINK ELEVATING 4550 03:45:29,520 --> 03:45:30,920 SOME OF THESE TOPICS THAT WERE 4551 03:45:30,920 --> 03:45:33,480 BROUGHT UP AS A MEANS OF 4552 03:45:33,480 --> 03:45:36,440 REVIEWING THE DIVERSITY ASPECTS, 4553 03:45:36,440 --> 03:45:39,920 WHETHER THIS TEAM IS A BIGGER 4554 03:45:39,920 --> 03:45:42,400 TEAM IS NEEDED FOR THE KIND OF 4555 03:45:42,400 --> 03:45:44,080 RESEARCH THEY DO, THIS IS THE 4556 03:45:44,080 --> 03:45:46,600 KIND OF THING THAT COULD BE 4557 03:45:46,600 --> 03:45:48,280 DISCUSSED AT COUNCIL FIRST FROM 4558 03:45:48,280 --> 03:45:49,120 THE PROGRAM PEOPLE SAYING THIS 4559 03:45:49,120 --> 03:45:51,280 IS WHY WE THINK IT'S GOOD OR NOT 4560 03:45:51,280 --> 03:45:54,440 GOOD, WHATEVER IT COMES UP IT 4561 03:45:54,440 --> 03:46:00,440 COULD BE DISCUSSED AT COUNCIL. 4562 03:46:00,440 --> 03:46:05,480 AND I WON'T HAVE TO DO IT ANYWAY 4563 03:46:05,480 --> 03:46:06,800 BECAUSE THIS IS MY LAST MEETING. 4564 03:46:06,800 --> 03:46:14,960 >> I'M LOOKING AT THE TIME AND 4565 03:46:14,960 --> 03:46:15,520 WE'RE GETTING A LITTLE BIT 4566 03:46:15,520 --> 03:46:17,920 BEHIND TIME. 4567 03:46:17,920 --> 03:46:22,920 DR. MALDONADO. 4568 03:46:22,920 --> 03:46:26,920 >> I WAS HAVING TROUBLE AND 4569 03:46:26,920 --> 03:46:28,280 LEAVING MY VIDEO OFF. 4570 03:46:28,280 --> 03:46:31,320 I AGREE WITH COMMENTS AND WHEN I 4571 03:46:31,320 --> 03:46:33,880 INTRODUCED MYSELF I'M ALSO 4572 03:46:33,880 --> 03:46:34,960 SENIOR ASSOCIATE GENE FOR 4573 03:46:34,960 --> 03:46:36,440 DIVERSITY AT THE STANFORD SCHOOL 4574 03:46:36,440 --> 03:46:38,760 OF MEDICINE AND I THINK WE'RE 4575 03:46:38,760 --> 03:46:41,560 ALL AWARE OF THE DATA AROUND 4576 03:46:41,560 --> 03:46:43,080 JUNIOR INVESTIGATORS AND THE 4577 03:46:43,080 --> 03:46:45,200 TIME TO FIRST START RO1. 4578 03:46:45,200 --> 03:46:50,640 IT'S INCREDIBLY EXTENDED. 4579 03:46:50,640 --> 03:46:56,840 THE CURRENT AGE AS A MEAN OF 45 4580 03:46:56,840 --> 03:46:58,960 YEARS OF AGE. 4581 03:46:58,960 --> 03:47:09,480 WE ARE -- I WOULD LIKE TO SEE 4582 03:47:12,800 --> 03:47:17,480 MORE MEANS TESTING OF THEE 4583 03:47:17,480 --> 03:47:19,600 OPTIONS TO SEE I'M AN 4584 03:47:19,600 --> 03:47:21,720 EPIDEMIOLOGIST AND SEE WHO YOU 4585 03:47:21,720 --> 03:47:22,960 WOULD INCLUDE AND EXCLUDE. 4586 03:47:22,960 --> 03:47:26,960 I WANT TO MAKE SURE WE'RE 4587 03:47:26,960 --> 03:47:30,080 REWARDING THE SCHOLARSHIP BUT 4588 03:47:30,080 --> 03:47:32,480 ALSO INCLUDING AS MANY OF THE 4589 03:47:32,480 --> 03:47:34,480 BOTTOM 50% DISTRIBUTING THAT 4590 03:47:34,480 --> 03:47:34,720 BETTER. 4591 03:47:34,720 --> 03:47:36,160 MAYBE MEANS TESTING AND I'M SURE 4592 03:47:36,160 --> 03:47:40,560 YOU'VE ALREADY DONE SOME OF THIS 4593 03:47:40,560 --> 03:47:43,320 BUT AS A FIRST PASS I DON'T KNOW 4594 03:47:43,320 --> 03:47:46,040 EXACTLY HOW MUCH YOU WOULD 4595 03:47:46,040 --> 03:47:48,400 CHANGE THE PROFILE AND THIS IS A 4596 03:47:48,400 --> 03:47:51,960 MAJOR POLICY SHIFT. 4597 03:47:51,960 --> 03:47:53,240 I THINK A LITTLE BIT MORE FOR 4598 03:47:53,240 --> 03:47:53,440 US. 4599 03:47:53,440 --> 03:47:54,960 I DON'T KNOW WHEN YOU'RE GOING 4600 03:47:54,960 --> 03:47:57,000 TO IMPLEMENT THIS BUT I WOULD 4601 03:47:57,000 --> 03:47:58,440 SAY GIVING THIS A LITTLE BIT 4602 03:47:58,440 --> 03:48:01,120 MORE OF AN UNDERSTANDING OF WHO 4603 03:48:01,120 --> 03:48:03,600 WOULD BE INCLUDED BY SOME OF THE 4604 03:48:03,600 --> 03:48:06,640 MEASURES AND WHAT THE 4605 03:48:06,640 --> 03:48:07,880 SENSITIVITY ANALYSIS AROUND THAT 4606 03:48:07,880 --> 03:48:12,480 AND DIVERSIFYING THE WORKPLACE 4607 03:48:12,480 --> 03:48:14,040 APPLICATIONS HOW THAT WOULD 4608 03:48:14,040 --> 03:48:16,280 IMPACT THIS PARTICULAR GROUP. 4609 03:48:16,280 --> 03:48:18,400 THE SECOND AREA I THINK THAT'S 4610 03:48:18,400 --> 03:48:20,320 REALLY IMPORTANT, I COMMISSIONED 4611 03:48:20,320 --> 03:48:22,520 A TASK FORCE ON IMPACT OF 4612 03:48:22,520 --> 03:48:26,960 COVID-19 ON WOMEN FACULTY AT 4613 03:48:26,960 --> 03:48:27,560 STANFORD. 4614 03:48:27,560 --> 03:48:30,200 WE PUT TOGETHER A TOOL KIT OF 4615 03:48:30,200 --> 03:48:31,800 IMMEDIATE ACTIONS WE COULD TAKE 4616 03:48:31,800 --> 03:48:33,640 AS DEPARTMENT CHAIRS AND OTHER 4617 03:48:33,640 --> 03:48:35,960 LEADERS TO SUPPORT YOUNG WOMEN 4618 03:48:35,960 --> 03:48:36,720 INVESTIGATORS BUT WE REALIZE 4619 03:48:36,720 --> 03:48:38,960 THIS IS OBVIOUSLY NOT A GENDERED 4620 03:48:38,960 --> 03:48:39,160 ISSUE. 4621 03:48:39,160 --> 03:48:42,080 IT TENDS TO HAVE A GENDER IMPACT 4622 03:48:42,080 --> 03:48:45,920 DISPARATE BUT IT'S AN IMPACT 4623 03:48:45,920 --> 03:48:50,920 OVER ALL ON JUNIOR FACULTY. 4624 03:48:50,920 --> 03:49:01,200 I DO THINK THAT 4625 03:49:03,000 --> 03:49:03,800 [AUDIO DIGITIZING] 4626 03:49:03,800 --> 03:49:06,440 AND IT'S HARD TO EXCLUDE SENIOR 4627 03:49:06,440 --> 03:49:10,040 FACULTY WHEN THEY ARE PROBABLY 4628 03:49:10,040 --> 03:49:12,080 THEIR C.V.s AND TRACK RECORDS 4629 03:49:12,080 --> 03:49:14,440 WILL OVERWHELM WHAT'S GOING ON 4630 03:49:14,440 --> 03:49:16,280 WITH THE JUNIOR FACULTY AND IN 4631 03:49:16,280 --> 03:49:17,720 THE LAST TWO YEARS THEY'VE BEEN 4632 03:49:17,720 --> 03:49:19,520 ABLE TO EXPAND THEIR TRAJECTORY 4633 03:49:19,520 --> 03:49:22,920 AS WELL AS THE SENIOR PEOPLE 4634 03:49:22,920 --> 03:49:24,520 HAVE DONE. 4635 03:49:24,520 --> 03:49:27,600 I THINK A DIFFERENT MECHANISM 4636 03:49:27,600 --> 03:49:29,560 FOR FOCUSSING ON JUNIOR FACULTY 4637 03:49:29,560 --> 03:49:34,360 APPLICATIONS WOULD BE BEYOND THE 4638 03:49:34,360 --> 03:49:36,080 FIRST AWARD AND MAYBE INCREASING 4639 03:49:36,080 --> 03:49:37,800 ACCESS TO FIRST AWARDS WOULD BE 4640 03:49:37,800 --> 03:49:38,960 HELPFUL AND THIRD -- 4641 03:49:38,960 --> 03:49:49,280 [AUDIO DIGITIZING] 4642 03:49:58,600 --> 03:49:59,440 >> WE'RE HAVING TROUBLE. 4643 03:49:59,440 --> 03:50:01,440 >> SORRY ABOUT THE CONNECTION. 4644 03:50:01,440 --> 03:50:03,600 SILICON VALLEY ISN'T WHAT IT'S 4645 03:50:03,600 --> 03:50:05,960 SUPPOSED TO BE. 4646 03:50:05,960 --> 03:50:08,200 I CAN TELL YOU THAT I STILL 4647 03:50:08,200 --> 03:50:13,080 THINK THE CULTURE NEEDS MAJOR 4648 03:50:13,080 --> 03:50:13,360 REVAMPING. 4649 03:50:13,360 --> 03:50:14,880 IT'S STILL A QUAGMIRE IN I HAVE 4650 03:50:14,880 --> 03:50:15,160 VIEW. 4651 03:50:15,160 --> 03:50:20,080 I THINK THE PANDEMIC HAS ONLY 4652 03:50:20,080 --> 03:50:20,800 MADE IT WORSE. 4653 03:50:20,800 --> 03:50:24,120 I DON'T KNOW HOW TO ADDRESS THAT 4654 03:50:24,120 --> 03:50:27,360 CLEARLY. 4655 03:50:27,360 --> 03:50:32,200 I WOULD SUGGEST THAT IS A MAJOR 4656 03:50:32,200 --> 03:50:33,760 AREA AND DOING THE WORK-AROUNDS 4657 03:50:33,760 --> 03:50:35,200 AROUND THE STUDY SECTION IS 4658 03:50:35,200 --> 03:50:38,960 HELPFUL BUT IT'S NOT GOING TO BE 4659 03:50:38,960 --> 03:50:43,360 A FUNDAMENTAL CHANGE UNTIL WE 4660 03:50:43,360 --> 03:50:44,240 CHANGE THE CULTURE OF THE STUDY 4661 03:50:44,240 --> 03:50:45,880 SECTIONS. 4662 03:50:45,880 --> 03:50:48,440 >> DO YOU WANT TO GIVE THE LAST 4663 03:50:48,440 --> 03:50:53,600 WORD TO DR. FAIR? 4664 03:50:53,600 --> 03:50:54,760 >> I DO WANT TO ADDRESS SOME 4665 03:50:54,760 --> 03:50:57,560 COMMENTS BUT I WANT TO HEAR FROM 4666 03:50:57,560 --> 03:50:58,960 DR. FAIR. 4667 03:50:58,960 --> 03:51:03,120 >> I'LL BE QUICK. 4668 03:51:03,120 --> 03:51:06,360 I WANT TO ADDRESS THE COMMENT 4669 03:51:06,360 --> 03:51:10,920 THAT WON'T CHANGE THE STUDY 4670 03:51:10,920 --> 03:51:12,440 SECTION BUT AND THIS IS A 4671 03:51:12,440 --> 03:51:15,080 THOUGHTFUL POLICY. 4672 03:51:15,080 --> 03:51:18,440 WE'RE TRYING TO THINK CREATIVELY 4673 03:51:18,440 --> 03:51:22,240 TO IMPLEMENT IT AND WE HAVE 4674 03:51:22,240 --> 03:51:23,240 THOUGHTFUL DIRECTORS AND 4675 03:51:23,240 --> 03:51:24,480 PROGRAMS AND HOPEFULLY YOU CAN 4676 03:51:24,480 --> 03:51:25,880 BRING THE MESSAGE BECAUSE IT'S 4677 03:51:25,880 --> 03:51:30,440 SUCH A BIG PROBLEM FOR DOING THE 4678 03:51:30,440 --> 03:51:30,920 THING YOU WANT. 4679 03:51:30,920 --> 03:51:32,520 I WANT TO PUT THAT OUT THERE. 4680 03:51:32,520 --> 03:51:33,320 >> THANK YOU. 4681 03:51:33,320 --> 03:51:34,920 IF I CAN MAKE A DIRECT COMMENT 4682 03:51:34,920 --> 03:51:40,360 AND THEN WE'LL MOVE ON. 4683 03:51:40,360 --> 03:51:42,360 THERE'S THREE LEVELS OF PLACES 4684 03:51:42,360 --> 03:51:43,000 TO INTERACT. 4685 03:51:43,000 --> 03:51:45,000 EVERYONE IS AWARE OF THE ISSUES 4686 03:51:45,000 --> 03:51:50,960 WITH THE COUNCIL STUDY SECTIONS. 4687 03:51:50,960 --> 03:52:00,320 AND NONI BURNS HAS IMPLEMENTED 4688 03:52:00,320 --> 03:52:03,280 AN IMPLICIT BIAS TRAINING COURSE 4689 03:52:03,280 --> 03:52:04,960 SO FOR THOSE REVIEWERS, YOU'RE 4690 03:52:04,960 --> 03:52:06,040 EITHER GOING TO TAKE IT SOON OR 4691 03:52:06,040 --> 03:52:08,080 YOU HAVE TAKEN IT BUT FROM WHAT 4692 03:52:08,080 --> 03:52:13,080 HE HEARD FROM HER, IT'S BEEN 4693 03:52:13,080 --> 03:52:14,280 VERY WELL REVIEWED AND 4694 03:52:14,280 --> 03:52:14,640 APPRECIATED. 4695 03:52:14,640 --> 03:52:17,080 PEOPLE HAVE COMMENTED THEY WERE 4696 03:52:17,080 --> 03:52:20,160 NOT AWARE OF THEIR BIASES WHICH 4697 03:52:20,160 --> 03:52:22,520 INCLUDES BIASES TOWARDS SENIOR 4698 03:52:22,520 --> 03:52:28,760 INVESTIGATORS WHO AS REBECCA AND 4699 03:52:28,760 --> 03:52:32,480 SHAWNA TEND TO BE WHITE AND MALE 4700 03:52:32,480 --> 03:52:34,960 AND IT AFFECTS SOME OF THE 4701 03:52:34,960 --> 03:52:37,080 REVIEWERS FOR THE NICHD INTERNAL 4702 03:52:37,080 --> 03:52:38,800 STUDY SECTIONS, WE NEED TO 4703 03:52:38,800 --> 03:52:42,200 IMPLEMENT THAT SAME KIND OF 4704 03:52:42,200 --> 03:52:43,080 TRAINING INTO OUR OWN STUDY 4705 03:52:43,080 --> 03:52:46,640 SECTIONS. 4706 03:52:46,640 --> 03:52:47,720 THAT'S NUMBER ONE. 4707 03:52:47,720 --> 03:52:49,360 NUMBER TWO, YOU HEARD OF WHAT 4708 03:52:49,360 --> 03:52:50,000 WE'RE DOING INSTITUTE WIDE BUT 4709 03:52:50,000 --> 03:52:53,560 NUMBER THREE AT THE BEGINNING 4710 03:52:53,560 --> 03:52:57,480 WHEN YOU TALKED ABOUT DR. TABAK 4711 03:52:57,480 --> 03:53:03,280 AND DR. TABAK MOVING FROM ACTING 4712 03:53:03,280 --> 03:53:06,480 DIRECTOR TO MORE AND HE'S 4713 03:53:06,480 --> 03:53:09,200 EXTREMELY AWARE OF THIS AND ITS 4714 03:53:09,200 --> 03:53:11,920 CONNECTION TO YOUNG 4715 03:53:11,920 --> 03:53:12,760 INVESTIGATORS AND INVESTIGATORS 4716 03:53:12,760 --> 03:53:14,920 FROM UNDER REPRESENTED 4717 03:53:14,920 --> 03:53:24,760 MINORITIES. 4718 03:53:24,760 --> 03:53:27,360 THE DATA SHOWS THEY'RE 4719 03:53:27,360 --> 03:53:28,600 OVERWHELMINGLY WHITE AND MALE 4720 03:53:28,600 --> 03:53:30,960 AND IT CLOSE THE OPPORTUNITIES 4721 03:53:30,960 --> 03:53:33,160 TO DIVERSE IF I THE WORKFORCE. 4722 03:53:33,160 --> 03:53:37,320 IN THE OFFICE OF THE DIRECTOR 4723 03:53:37,320 --> 03:53:38,600 THEY'RE DOING QUITE A LOT OF 4724 03:53:38,600 --> 03:53:40,640 DATA MODELLING TO SEE WHAT THEY 4725 03:53:40,640 --> 03:53:42,120 CAN DO AT A HIGH LEVEL AND I 4726 03:53:42,120 --> 03:53:47,600 WANT TO LEAVE THE MESSAGE THIS 4727 03:53:47,600 --> 03:53:51,760 IS A VERY CRUCIAL AREA WITHIN 4728 03:53:51,760 --> 03:53:53,200 THE INSTITUTES AND THE OFFICE OF 4729 03:53:53,200 --> 03:53:54,880 THE DIRECTOR OF NIH. 4730 03:53:54,880 --> 03:53:55,400 HOPEFULLY WE'LL SEE MAJOR 4731 03:53:55,400 --> 03:54:05,560 CHANGES. 4732 03:54:08,160 --> 03:54:09,960 >> THANK YOU FOR THE 4733 03:54:09,960 --> 03:54:10,280 CONVERSATION. 4734 03:54:10,280 --> 03:54:14,480 WE ANTICIPATED A LOT OF INPUT 4735 03:54:14,480 --> 03:54:15,640 AND WE'RE GRATEFUL. 4736 03:54:15,640 --> 03:54:17,720 IT'S NOT A DONE DEAL. 4737 03:54:17,720 --> 03:54:20,000 IT WILL SHAPE OUR POLICIES IN 4738 03:54:20,000 --> 03:54:22,160 LIGHT OF YOUR COMMENTS AND IN 4739 03:54:22,160 --> 03:54:23,040 LIGHT OF WHAT'S HAPPENING ACROSS 4740 03:54:23,040 --> 03:54:33,120 NIH. 4741 03:54:33,600 --> 03:54:34,440 >> READY FOR THE NEXT SESSION? 4742 03:54:34,440 --> 03:54:38,120 >> WE'RE READY FOR THE NEXT 4743 03:54:38,120 --> 03:54:38,360 SECTION. 4744 03:54:38,360 --> 03:54:42,520 >> THIS IS -- AND FIRST WE THANK 4745 03:54:42,520 --> 03:54:43,640 YOU AND NOTE YOUR COMMENTS IN 4746 03:54:43,640 --> 03:54:46,640 THE CHAT BOX AND HOPE WE'LL BE 4747 03:54:46,640 --> 03:54:47,400 CAPTURING THEM AND RECORDING 4748 03:54:47,400 --> 03:54:50,880 THEM FOR OUR INFORMATION. 4749 03:54:50,880 --> 03:54:54,800 THE NEXT SECTION A BITTER SWEET 4750 03:54:54,800 --> 03:54:59,800 SECTION BECAUSE WE'RE VERY SAD 4751 03:54:59,800 --> 03:55:03,200 WE HAVE QUITE A NUMBER, SIX 4752 03:55:03,200 --> 03:55:06,080 PEOPLE RETIRING THIS YEAR AFTER 4753 03:55:06,080 --> 03:55:07,000 THEIR DEDICATED SERVICE ON THIS 4754 03:55:07,000 --> 03:55:07,800 ADVISORY COUNCIL. 4755 03:55:07,800 --> 03:55:10,680 I'M GOING CALL ON PEOPLE IT'S 4756 03:55:10,680 --> 03:55:12,520 NOT AN ALPHABETICAL ORDER SO 4757 03:55:12,520 --> 03:55:15,760 YOU'LL HAVE TO BEAR WITH ME. 4758 03:55:15,760 --> 03:55:21,000 THE FIRST IS DR. MICHELLE 4759 03:55:21,000 --> 03:55:22,720 CAGGANA YOU CAN SAY WHATEVER YOU 4760 03:55:22,720 --> 03:55:23,720 WANT ON WHAT THE EXPERIENCE WAS 4761 03:55:23,720 --> 03:55:27,760 LIKE AND ANY SESSIONS YOU HAVE 4762 03:55:27,760 --> 03:55:29,120 FOR US ANYTHING YOU LEARNED. 4763 03:55:29,120 --> 03:55:30,520 THE FLOOR IS YOURS. 4764 03:55:30,520 --> 03:55:33,760 >> THANK YOU. 4765 03:55:33,760 --> 03:55:35,760 I LEARNED A LOT AND I GET TO GO 4766 03:55:35,760 --> 03:55:38,960 FIRST SO WE'LL SEE HOW IT GOES. 4767 03:55:38,960 --> 03:55:42,360 TIME SURE FLIES. 4768 03:55:42,360 --> 03:55:45,840 I WAS APPROACHED IN 2017 AND 4769 03:55:45,840 --> 03:55:52,480 ASKED IF I I WANTED TO BE ON 4770 03:55:52,480 --> 03:55:57,400 COUNCIL AND I SAID OKAY SO I 4771 03:55:57,400 --> 03:55:58,920 SUBMITTED THE MATERIALS I NEEDED 4772 03:55:58,920 --> 03:56:00,760 AND WAITED A LONG TIME AND 4773 03:56:00,760 --> 03:56:02,560 FINALLY GOT A LETTER SHOWING UP 4774 03:56:02,560 --> 03:56:07,160 FROM SECRETARY AZAR THAT WAS 4775 03:56:07,160 --> 03:56:08,560 INVITING ME TO JOIN. 4776 03:56:08,560 --> 03:56:09,760 I WANTED TO THANK HER FOR ASKING 4777 03:56:09,760 --> 03:56:12,320 ME TO APPLY AND GIVING ME THIS 4778 03:56:12,320 --> 03:56:13,400 EXPERIENCE AND FOR BEING MY 4779 03:56:13,400 --> 03:56:18,560 BUDDY OVER THE PAST FEW YEARS. 4780 03:56:18,560 --> 03:56:23,480 ALSO THANKS TO THE NICHD STAFF 4781 03:56:23,480 --> 03:56:26,320 AND FOR ANSWERING ALL MY 4782 03:56:26,320 --> 03:56:26,960 QUESTIONS. 4783 03:56:26,960 --> 03:56:30,560 I WANTED TO THANK YOU, 4784 03:56:30,560 --> 03:56:36,400 DR. BIANCHI AND SERNICHE. 4785 03:56:36,400 --> 03:56:37,920 AS A NEWBORN SCREENING PERSON 4786 03:56:37,920 --> 03:56:39,000 THE HEALTH OF WOMEN AND CHILDREN 4787 03:56:39,000 --> 03:56:48,600 ARE HIGH ON MY LIST. 4788 03:56:48,600 --> 03:56:50,920 IT'S ALLOWED ME TO WITNESS NEW 4789 03:56:50,920 --> 03:56:51,360 INITIATIVES. 4790 03:56:51,360 --> 03:56:53,640 I WAS NEAT SEEING THE DIFFERENT 4791 03:56:53,640 --> 03:56:54,960 VOICES OF PARTICIPANTS AND HOW 4792 03:56:54,960 --> 03:57:01,840 IT EVOLVED OVER TIME TO HAVE 4793 03:57:01,840 --> 03:57:03,240 CONCEPTS RELATED TO THE 4794 03:57:03,240 --> 03:57:03,760 ENJOYABLE AND EDUCATIONAL 4795 03:57:03,760 --> 03:57:07,960 SESSIONS. 4796 03:57:07,960 --> 03:57:10,640 ALSO ALL THE GREAT WORK DURING 4797 03:57:10,640 --> 03:57:17,320 THE PANDEMIC AND THE AFTER MATH 4798 03:57:17,320 --> 03:57:20,000 AND I WAS PRIVILEGED TO SEE THE 4799 03:57:20,000 --> 03:57:21,400 UNVEILING OF THE STRATEGIC PLAN 4800 03:57:21,400 --> 03:57:22,280 WHICH CONTINUES TO BE THE FOCUS 4801 03:57:22,280 --> 03:57:22,960 OF A LOT OF THE WORK WE DO ON 4802 03:57:22,960 --> 03:57:26,640 COUNCIL. 4803 03:57:26,640 --> 03:57:29,040 I HOPE WE CAN MEET IN PERSON AND 4804 03:57:29,040 --> 03:57:35,320 I WAS GOING SAY I'M GRADUATING. 4805 03:57:35,320 --> 03:57:36,880 AT LEAST WE GOT TO MEET AS A 4806 03:57:36,880 --> 03:57:39,120 GROUP A FEW TIMES BEFORE THE 4807 03:57:39,120 --> 03:57:43,560 PANDEMIC HIT. 4808 03:57:43,560 --> 03:57:44,800 I'M ALWAYS IMPRESSED BY THE 4809 03:57:44,800 --> 03:57:46,480 EXPERTISE AND DEDICATION OF THIS 4810 03:57:46,480 --> 03:57:46,960 GROUP. 4811 03:57:46,960 --> 03:57:51,560 I HOPE I CONTRIBUTED TO HELPING 4812 03:57:51,560 --> 03:57:55,920 THE INSTITUTE'S INITIATIVES AND 4813 03:57:55,920 --> 03:58:00,720 I'M LEAVING THE GROUP IN REALLY 4814 03:58:00,720 --> 03:58:02,960 GOOD HANDS AND NEW PEOPLE AND MY 4815 03:58:02,960 --> 03:58:05,720 TEAM IS ROTATING OFF SO I WANT 4816 03:58:05,720 --> 03:58:06,880 TO WISH EVERYONE THE BEST OF 4817 03:58:06,880 --> 03:58:07,320 LUCK AND GOOD HEALTH. 4818 03:58:07,320 --> 03:58:16,160 THANKS. 4819 03:58:16,160 --> 03:58:17,720 >> THANK YOU SO MUCH. 4820 03:58:17,720 --> 03:58:21,080 >> WHY'S IT TAKE SO LONG. 4821 03:58:21,080 --> 03:58:24,720 WE QUERY INTERESTS AND SOME 4822 03:58:24,720 --> 03:58:25,680 PEOPLE HAVE TO BE CLEARED BY THE 4823 03:58:25,680 --> 03:58:27,360 DEPARTMENT OF HEALTH AND HUMAN 4824 03:58:27,360 --> 03:58:29,600 SERVICES AND SOME PEOPLE GET 4825 03:58:29,600 --> 03:58:30,360 REJECTED. 4826 03:58:30,360 --> 03:58:33,240 THERE'S ALL KINDS OF THINGS 4827 03:58:33,240 --> 03:58:33,800 TAKEN CONSIDERATION. 4828 03:58:33,800 --> 03:58:34,480 IT'S NOT A COMMENT ON YOUR 4829 03:58:34,480 --> 03:58:39,160 SCHOLARSHIP OR CAREER. 4830 03:58:39,160 --> 03:58:41,520 OFTEN IT'S CONFLICT OF INTEREST 4831 03:58:41,520 --> 03:58:46,480 OR BALANCING GEOGRAPHIC OR 4832 03:58:46,480 --> 03:58:47,320 DIVERSITY NEEDS AND SOMETIMES 4833 03:58:47,320 --> 03:58:48,520 POLITICAL AS WELL THAT'S BEYOND 4834 03:58:48,520 --> 03:58:58,760 OUR CONTROL. 4835 03:59:00,520 --> 03:59:03,600 >> NEXT UP IS DR. MATZUK. 4836 03:59:03,600 --> 03:59:14,160 >> MICHELLE SAID A FEW THINGS I 4837 03:59:15,960 --> 03:59:16,840 MAY REPEAT. 4838 03:59:16,840 --> 03:59:18,560 I'D LIKE TO THANK PAST COUNCIL. 4839 03:59:18,560 --> 03:59:20,720 THIS IS AN AMAZINGLY DIVERSE 4840 03:59:20,720 --> 03:59:22,360 GROUP AND I'VE APPRECIATED 4841 03:59:22,360 --> 03:59:26,960 DIFFERENT PERSPECTIVES THAT 4842 03:59:26,960 --> 03:59:29,800 PEOPLE HAVE GIVEN ESPECIALLY 4843 03:59:29,800 --> 03:59:32,360 OVER THE LAST 35, 40 MINUTES. 4844 03:59:32,360 --> 03:59:33,320 I APPRECIATE THE DIFFERENT 4845 03:59:33,320 --> 03:59:34,120 PERSPECTIVES. 4846 03:59:34,120 --> 03:59:37,200 I'D ALSO LIKE TO SAY THAT NICHD 4847 03:59:37,200 --> 03:59:42,000 IF YOU DIDN'T NOTICE IT BEING ON 4848 03:59:42,000 --> 03:59:44,440 COUNCIL, WE HAVE AN AMAZING 4849 03:59:44,440 --> 03:59:46,920 BRANCH CHIEF PROGRAM OFFICERS, 4850 03:59:46,920 --> 03:59:49,040 SCIENTIFIC REVIEW OFFICERS AND 4851 03:59:49,040 --> 03:59:49,960 WE SHOULD REALLY APPRECIATE HOW 4852 03:59:49,960 --> 03:59:51,760 THEY GO OUT OF THEIR WAY TO HELP 4853 03:59:51,760 --> 03:59:52,720 ALL OF US. 4854 03:59:52,720 --> 03:59:57,080 MY WIFE HAS BEEN FUNDED TO HELP 4855 03:59:57,080 --> 03:59:58,880 OTHER NIH INSTITUTES AND THERE'S 4856 03:59:58,880 --> 04:00:02,360 NO COMPARISON BETWEEN NICHD AND 4857 04:00:02,360 --> 04:00:02,840 OTHER INSTITUTES. 4858 04:00:02,840 --> 04:00:04,960 IN PARTICULAR I WANTED TO THANK 4859 04:00:04,960 --> 04:00:06,480 A FEW OF THE PROGRAM OFFICERS 4860 04:00:06,480 --> 04:00:12,560 WITH WHOM I'VE INTERACTED 4861 04:00:12,560 --> 04:00:18,960 INCLUDING DR. CHANG AND STEPHEN 4862 04:00:18,960 --> 04:00:21,000 CALPIN AND OTHERS AND THERE'S 4863 04:00:21,000 --> 04:00:24,560 BEEN WARM INDIVIDUALS THAT HELP 4864 04:00:24,560 --> 04:00:26,920 ME AS AN INVESTIGATOR AND WHEN 4865 04:00:26,920 --> 04:00:31,720 WE COULD MEET IT WAS FANTASTIC 4866 04:00:31,720 --> 04:00:33,080 TO SPEAK WITH THEM IN PERSON. 4867 04:00:33,080 --> 04:00:34,200 I SEE PEOPLE ARE GOING TO MEET 4868 04:00:34,200 --> 04:00:39,080 AGAIN IN JANUARY. 4869 04:00:39,080 --> 04:00:42,200 I WISH THIS WAS THE TIME OF YEAR 4870 04:00:42,200 --> 04:00:44,280 WE COULD BE MEETING IN D.C. AND 4871 04:00:44,280 --> 04:00:45,880 WISH WE COULD HAVE MET IN PERSON 4872 04:00:45,880 --> 04:00:46,640 BECAUSE THE PERSONAL 4873 04:00:46,640 --> 04:00:52,480 INTERACTIONS HAVE BEEN TO ME. 4874 04:00:52,480 --> 04:00:56,400 ONE OF THE PERSONAL 4875 04:00:56,400 --> 04:01:00,400 INTERACTIONS, I'VE KNOWN LOU 4876 04:01:00,400 --> 04:01:03,720 DAPALO ABOUT 30 YEARS OR ONE OF 4877 04:01:03,720 --> 04:01:05,520 THE LAST TIMES AT THE COUNCIL 4878 04:01:05,520 --> 04:01:07,000 MEETING WE HAD LUNCH TOGETHER 4879 04:01:07,000 --> 04:01:10,400 AND CAUGHT UP ON DIFFERENT 4880 04:01:10,400 --> 04:01:11,360 THINGS. 4881 04:01:11,360 --> 04:01:14,640 ALSO LISA HALVERSON ANOTHER 4882 04:01:14,640 --> 04:01:18,400 FORMER BRANCH CHIEF A FANTASTIC 4883 04:01:18,400 --> 04:01:18,720 INDIVIDUAL. 4884 04:01:18,720 --> 04:01:22,960 GREAT PEOPLE SOMETIMES MOVE ON 4885 04:01:22,960 --> 04:01:24,800 TO OTHER GREAT OPPORTUNITIES. 4886 04:01:24,800 --> 04:01:29,520 AND I WANT TO THANK MY COUNCIL 4887 04:01:29,520 --> 04:01:34,680 BUDDY AND MULTI-BRANCH CHIEF 4888 04:01:34,680 --> 04:01:36,520 DR. JOHNSTON AND NOW HE'S THREE 4889 04:01:36,520 --> 04:01:38,560 BRANCH CHIEFS AND I REALLY 4890 04:01:38,560 --> 04:01:41,440 APPRECIATE HIS LEADERSHIP, 4891 04:01:41,440 --> 04:01:42,560 GUIDANCE AND DISCUSSIONS PRIOR 4892 04:01:42,560 --> 04:01:43,800 TO COUNCIL AND TYPICALLY WE'D 4893 04:01:43,800 --> 04:01:48,000 REACH OUT AND BE ON A ZOOM CALL 4894 04:01:48,000 --> 04:01:50,360 TALKING ABOUT MY ASSIGNMENTS AND 4895 04:01:50,360 --> 04:01:56,080 IF THERE WERE ISSUES OR NEEDED 4896 04:01:56,080 --> 04:02:00,560 ANYTHING ELSE AND ANOTHER 4897 04:02:00,560 --> 04:02:03,600 INDIVIDUAL WOULD MEET WITH US. 4898 04:02:03,600 --> 04:02:05,240 I SPOKE ABOUT MEETINGS BEFORE 4899 04:02:05,240 --> 04:02:06,240 THE PANDEMIC. 4900 04:02:06,240 --> 04:02:10,720 DAN AND I USED TO GET TOGETHER 4901 04:02:10,720 --> 04:02:12,560 FOR DINNERS BEFORE HAND. 4902 04:02:12,560 --> 04:02:14,320 ALONG WITH DAN IS STEWART MOSS. 4903 04:02:14,320 --> 04:02:17,960 SOME OF THE NEW INDIVIDUALS MAY 4904 04:02:17,960 --> 04:02:23,360 NOT KNOW HIM AND MAYBE OTHERS 4905 04:02:23,360 --> 04:02:26,840 DON'T KNOW HIM BUT HE'S A GREAT 4906 04:02:26,840 --> 04:02:30,560 GUY AND I KNEW HIM IN THE 4907 04:02:30,560 --> 04:02:34,760 ACADEMIC ARENA AND HAVE KNOWN 4908 04:02:34,760 --> 04:02:37,560 HIM WITH NIH AND WITH STEWART 4909 04:02:37,560 --> 04:02:42,560 DYING DURING THE PANDEMIC I MISS 4910 04:02:42,560 --> 04:02:46,040 THOSE INTERACTIONS ONE OF THE 4911 04:02:46,040 --> 04:02:49,000 LAST DINNERS WERE STEWART AND 4912 04:02:49,000 --> 04:02:50,680 LINDSEY AND I AND IT WAS NICE TO 4913 04:02:50,680 --> 04:02:54,600 FREELY TALK ABOUT THINGS AND GET 4914 04:02:54,600 --> 04:03:00,040 TO KNOW PEOPLE BETTER. 4915 04:03:00,040 --> 04:03:00,640 THOSE THINGS I'LL REMEMBER 4916 04:03:00,640 --> 04:03:02,880 FOREVER FOR ME AND I CAN'T SAY 4917 04:03:02,880 --> 04:03:11,360 ENOUGH ABOUT YOU, DIA DIANA. 4918 04:03:11,360 --> 04:03:16,200 IT'S OBVIOUS FROM ALL THE 4919 04:03:16,200 --> 04:03:18,440 MEETINGS WE'VE HAD EVENBURY MOTE 4920 04:03:18,440 --> 04:03:20,240 YOU AND GAVE A PRESENTATION AT 4921 04:03:20,240 --> 04:03:22,760 NIH YOU REALLY HAVE DONE A 4922 04:03:22,760 --> 04:03:24,560 FANTASTIC JOB. 4923 04:03:24,560 --> 04:03:27,680 YOU'VE SURROUNDED YOURSELF WITH 4924 04:03:27,680 --> 04:03:30,400 DIVERSE GREAT PEOPLE AND I 4925 04:03:30,400 --> 04:03:32,200 REALLY FEEL THAT NICHD'S IN 4926 04:03:32,200 --> 04:03:37,480 GREAT HANDS WITH YOU AT THE HELM 4927 04:03:37,480 --> 04:03:39,880 AND ALL OF NIH AND THE FUTURE 4928 04:03:39,880 --> 04:03:43,600 DIRECTOR SHOULD KNOW THE ROLE 4929 04:03:43,600 --> 04:03:44,720 YOU'VE BEEN PLAYING AND HOW WELL 4930 04:03:44,720 --> 04:03:47,040 A JOB YOU'VE BEEN DOING. 4931 04:03:47,040 --> 04:03:48,840 >> THANK YOU SO MUCH. 4932 04:03:48,840 --> 04:03:50,640 IT'S BEEN GREAT HAVING YOU ON 4933 04:03:50,640 --> 04:03:52,760 OUR ADVISORY COUNCIL AND 4934 04:03:52,760 --> 04:03:54,960 PARTICULARLY THANK YOU FOR 4935 04:03:54,960 --> 04:03:59,200 GIVING SHUT OUTS TO SO MANY OF 4936 04:03:59,200 --> 04:04:01,480 OUR STAFF MEMBERS AND NICE HAVE 4937 04:04:01,480 --> 04:04:04,160 YOU THE COMPARATOR. 4938 04:04:04,160 --> 04:04:05,240 YOU KNOW THROUGH YOUR WIFE'S 4939 04:04:05,240 --> 04:04:06,000 WORK HOW DIFFERENT AND SPECIAL 4940 04:04:06,000 --> 04:04:06,560 OUR STAFF ARE. 4941 04:04:06,560 --> 04:04:16,200 THANK YOU. 4942 04:04:16,200 --> 04:04:22,520 >> THANK YOU, MY NAME IS REBEKAH 4943 04:04:22,520 --> 04:04:26,200 WONG AND THE NAME IS MISLEADING, 4944 04:04:26,200 --> 04:04:28,240 I WAS BORN AND TRAINED IN MEXICO 4945 04:04:28,240 --> 04:04:31,560 AND TRAINED IN THE U.S. IN Ph.D. 4946 04:04:31,560 --> 04:04:33,360 AND POPULATION ECONOMICS AND SO 4947 04:04:33,360 --> 04:04:38,960 HAVING SAID THAT, I'D LIKE TO 4948 04:04:38,960 --> 04:04:41,120 REFLECT THREE POINTS. 4949 04:04:41,120 --> 04:04:42,960 FIRST, I WAS GIVEN THE PRIVILEGE 4950 04:04:42,960 --> 04:04:45,320 LIKE MANY OF US HAVE SAID TO 4951 04:04:45,320 --> 04:04:47,600 SERVE ON THIS ADVISORY COMMITTEE 4952 04:04:47,600 --> 04:04:50,800 KIND OF NOT EXPECTING THE USUAL 4953 04:04:50,800 --> 04:04:51,040 MEETING. 4954 04:04:51,040 --> 04:04:53,360 YOU WANT ME TO SERVE ON THIS 4955 04:04:53,360 --> 04:04:56,400 BODY AND SO IT WAS A VERY MUCH 4956 04:04:56,400 --> 04:04:58,960 AN HONOR TO SERVE AT THE ONLY 4957 04:04:58,960 --> 04:05:04,160 SOCIAL SCIENTIST IN THIS GROUP 4958 04:05:04,160 --> 04:05:08,200 IN MY FIRST YEAR AND IT WAS LED 4959 04:05:08,200 --> 04:05:10,800 BY DR. BIANCHI AND A WONDERFUL 4960 04:05:10,800 --> 04:05:11,640 GROUP OF PEOPLE IN COUNCIL AND 4961 04:05:11,640 --> 04:05:15,360 OUTSIDE OF COUNCIL. 4962 04:05:15,360 --> 04:05:17,320 THE CROSS CUTTING THEMES OF 4963 04:05:17,320 --> 04:05:18,440 HEALTH DISPARITIES WAS ALREADY 4964 04:05:18,440 --> 04:05:22,920 THERE AND I WAS PLEASANTLY 4965 04:05:22,920 --> 04:05:25,000 SURPRISED. 4966 04:05:25,000 --> 04:05:27,720 I'LL REFER TO THIS THEME AGAIN. 4967 04:05:27,720 --> 04:05:29,480 AND MY SECOND POINT LIKE WE'VE 4968 04:05:29,480 --> 04:05:32,520 BEEN SAYING THE SERVICE WAS 4969 04:05:32,520 --> 04:05:33,080 MOSTLY VIRTUAL DUE TO THE 4970 04:05:33,080 --> 04:05:34,360 PRESIDENT-ELECT PANDEMIC BUT THE 4971 04:05:34,360 --> 04:05:40,200 OTHER SIDE OF THE COIN IS THAT 4972 04:05:40,200 --> 04:05:45,400 WE WERE ABLE TO SEE HOW THE NIH 4973 04:05:45,400 --> 04:05:47,400 REACTS TO A GLOBAL EMERGENCY AND 4974 04:05:47,400 --> 04:05:48,560 NIH MISSED NO BEAT. 4975 04:05:48,560 --> 04:05:52,320 THE EMERGENCY PROGRAMS WERE 4976 04:05:52,320 --> 04:05:54,280 QUICKLY LAUNCHED, RESEARCHERS 4977 04:05:54,280 --> 04:05:56,800 RESPONDED TO THE EMERGENCY CALL. 4978 04:05:56,800 --> 04:05:59,280 WHAT AN IMPRESSIVE DISPLAY. 4979 04:05:59,280 --> 04:06:01,360 WE WERE ALL CONSCIOUS OF THE 4980 04:06:01,360 --> 04:06:02,680 DEVASTATION BUT UNDERSTAND THE 4981 04:06:02,680 --> 04:06:04,320 UNIQUE ROLE OF SCIENTIST AND 4982 04:06:04,320 --> 04:06:09,680 EDUCATORS AND WE HAD TO KEEP 4983 04:06:09,680 --> 04:06:09,960 GOING. 4984 04:06:09,960 --> 04:06:12,160 WE HAD TO TRY HARDER AND COULD 4985 04:06:12,160 --> 04:06:14,680 SEE IT FROM THE INSIDE OF NIH. 4986 04:06:14,680 --> 04:06:17,120 THANK YOU, DR. BIANCHI AND ALL 4987 04:06:17,120 --> 04:06:21,040 YOUR STAFF, LIKE YOU MENTIONED 4988 04:06:21,040 --> 04:06:22,360 TODAY, YOU'RE AWARE OF THE 4989 04:06:22,360 --> 04:06:25,440 ENORMITY OF THE EFFORTS. 4990 04:06:25,440 --> 04:06:28,400 THAT WAS WONDERFUL TO SEE FROM 4991 04:06:28,400 --> 04:06:30,600 THE INSIGHT. 4992 04:06:30,600 --> 04:06:32,680 AND MY THIRD AND LAST POINT, 4993 04:06:32,680 --> 04:06:34,760 AFTER THE PANDEMIC, I HAD THE 4994 04:06:34,760 --> 04:06:37,680 PRIVILEGE TO SERVE IN A WORKING 4995 04:06:37,680 --> 04:06:38,920 GROUP PUT TOGETHER BY THE 4996 04:06:38,920 --> 04:06:49,280 COUNCIL OF COUNCILS. 4997 04:06:49,520 --> 04:06:51,920 YOU GAVE ME THE OPPORTUNITY AND 4998 04:06:51,920 --> 04:06:54,480 NOMINATED ME IN RESPONSE TO A 4999 04:06:54,480 --> 04:06:55,320 CONGRESSIONAL MANDATE TO 5000 04:06:55,320 --> 04:06:57,280 INTEGRATE THE BEHAVIORAL AND 5001 04:06:57,280 --> 04:06:59,000 SOCIAL APPROACHES TO ALL CENTERS 5002 04:06:59,000 --> 04:07:04,480 AND INSTITUTES OF NIH. 5003 04:07:04,480 --> 04:07:09,240 THE GOAL OF REALIZING BENEFITS 5004 04:07:09,240 --> 04:07:09,920 OF BEHAVIORAL RESEARCH TOWARDS 5005 04:07:09,920 --> 04:07:14,720 HEALTH EQUITY. 5006 04:07:14,720 --> 04:07:17,480 THE CHARGE WAS VERY IMPORTANT 5007 04:07:17,480 --> 04:07:20,240 BEFORE AND BECAME MORE PROMINENT 5008 04:07:20,240 --> 04:07:20,880 AFTER THE PANDEMIC. 5009 04:07:20,880 --> 04:07:23,880 THE CHARGE WAS NOT TO TELL 5010 04:07:23,880 --> 04:07:25,480 SCIENTISTS WHAT TO DO BUT MODIFY 5011 04:07:25,480 --> 04:07:32,880 HOW WE DO IT. 5012 04:07:32,880 --> 04:07:34,320 AMONG THE RECOMMENDATIONS IS TO 5013 04:07:34,320 --> 04:07:36,600 HAVE MORE BEHAVIORAL AND SOCIAL 5014 04:07:36,600 --> 04:07:37,920 SCIENTISTS REPRESENTED IN THE 5015 04:07:37,920 --> 04:07:41,520 NIH WORKFORCE AT ALL LEVELS AND 5016 04:07:41,520 --> 04:07:46,960 INCLUDING IN STUDY SECTIONS AND 5017 04:07:46,960 --> 04:07:49,800 IN COUNCILS. 5018 04:07:49,800 --> 04:07:54,720 THE EXTERNAL PHENOMENON AND THE 5019 04:07:54,720 --> 04:07:56,600 CULTURE AND LIVED EXPERIENCES 5020 04:07:56,600 --> 04:08:00,720 AND SOCIAL REGULATIONS AND 5021 04:08:00,720 --> 04:08:02,600 PROGRAMS AND POLICIES SHOULD BE 5022 04:08:02,600 --> 04:08:03,960 CONSIDERED WHEN WE AIM TO STUDY 5023 04:08:03,960 --> 04:08:06,600 THE HEALTH OF ALL PEOPLE. 5024 04:08:06,600 --> 04:08:08,280 THE NICHD ALREADY HAD IT IN THE 5025 04:08:08,280 --> 04:08:10,800 MISSION AND VISION BUT 5026 04:08:10,800 --> 04:08:12,000 ENCOURAGING TO IMPLEMENT AT ALL 5027 04:08:12,000 --> 04:08:14,800 LEVELS WAS QUITE ENCOURAGING TO 5028 04:08:14,800 --> 04:08:15,800 SEE THAT THAT'S WHAT THE 5029 04:08:15,800 --> 04:08:18,520 CONGRESS WAS MANDATED TO THE 5030 04:08:18,520 --> 04:08:18,720 NIH. 5031 04:08:18,720 --> 04:08:22,520 AGAIN, THIS WAS A UNIQUE 5032 04:08:22,520 --> 04:08:25,440 OPPORTUNITY FOR ME TO SEE OUR 5033 04:08:25,440 --> 04:08:28,400 DIVERSE VIEWS WELL REPRESENTED. 5034 04:08:28,400 --> 04:08:31,000 SO IN CLOSING, I THINK MY 5035 04:08:31,000 --> 04:08:34,240 REFLECTION LIKE MANY OF US IS 5036 04:08:34,240 --> 04:08:36,920 GOING TO BE A WONDERFUL AND RICH 5037 04:08:36,920 --> 04:08:37,760 LEARNING EXPERIENCE. 5038 04:08:37,760 --> 04:08:44,040 I FELT HONORED TO BE IN THIS 5039 04:08:44,040 --> 04:08:44,560 COMPANY. 5040 04:08:44,560 --> 04:08:46,120 I WANT TO THANK DR. BIANCHI AND 5041 04:08:46,120 --> 04:08:48,240 THE STAFF WHO RUN THE COUNCIL. 5042 04:08:48,240 --> 04:08:49,600 THANK YOU FOR YOUR PATIENCE IN 5043 04:08:49,600 --> 04:08:51,320 TRANSITIONING ALL OF TO US 5044 04:08:51,320 --> 04:08:52,960 VIRTUAL AND IN PARTICULAR I WANT 5045 04:08:52,960 --> 04:08:56,040 TO THANK MY BUDDY, REBECCA CLARK 5046 04:08:56,040 --> 04:09:01,520 AND THE TEAM IN THE POPULATION 5047 04:09:01,520 --> 04:09:04,400 DYNAMICS BRANCH IN NICHD FOR 5048 04:09:04,400 --> 04:09:05,440 FRESHMAN COUNCIL MEMBERS THE 5049 04:09:05,440 --> 04:09:07,640 BODY IS THE GREATEST INVENTION 5050 04:09:07,640 --> 04:09:10,000 YOU ALL CAME UP WITH IN COUNCIL. 5051 04:09:10,000 --> 04:09:15,800 HAVING A BUDDY IS FANTASTIC. 5052 04:09:15,800 --> 04:09:16,680 OUR EXPERIENCE IN PERSON WITH 5053 04:09:16,680 --> 04:09:18,640 OUR TEAMS WAS FABULOUS WHEN WE 5054 04:09:18,640 --> 04:09:19,720 COULD DO IT IN PERSON. 5055 04:09:19,720 --> 04:09:21,560 TOO BAD WE COULDN'T DO IT 5056 04:09:21,560 --> 04:09:21,800 ANYMORE. 5057 04:09:21,800 --> 04:09:24,640 FOR THE REST OF YOU ALL IN 5058 04:09:24,640 --> 04:09:26,320 COUNCIL, THANK YOU SO MUCH FOR 5059 04:09:26,320 --> 04:09:28,320 OUR TIME TOGETHER IN THIS 5060 04:09:28,320 --> 04:09:28,720 IMPORTANT SERVICE. 5061 04:09:28,720 --> 04:09:32,360 THANK YOU. 5062 04:09:32,360 --> 04:09:32,960 >> THANK YOU FOR THE CRUCIAL 5063 04:09:32,960 --> 04:09:42,160 COMMENTS. 5064 04:09:42,160 --> 04:09:43,920 I'M GLAD IT WAS A POSITIVE 5065 04:09:43,920 --> 04:09:45,960 EXPERIENCE AND THANK YOU FOR 5066 04:09:45,960 --> 04:09:47,080 REPRESENTING THE COUNCIL OF 5067 04:09:47,080 --> 04:09:47,720 COUNCILS SUBGROUP. 5068 04:09:47,720 --> 04:09:48,280 TO BE CONTINUED. 5069 04:09:48,280 --> 04:09:50,480 WE HOPE BY JUNE WE'LL BE ABLE TO 5070 04:09:50,480 --> 04:09:54,920 HAVE IT IN PERSON WHICH WOULD BE 5071 04:09:54,920 --> 04:09:55,120 GREAT. 5072 04:09:55,120 --> 04:09:59,560 NEXT BUT NOT LEAST IS 5073 04:09:59,560 --> 04:10:00,200 DR. WYNSHAW-BORIS. 5074 04:10:00,200 --> 04:10:04,440 >> I'LL TRY NOT TO REPEAT MYSELF 5075 04:10:04,440 --> 04:10:06,360 TOO MUCH BUT IT'S HARD BECAUSE 5076 04:10:06,360 --> 04:10:08,400 WE ALL HAD SIMILAR GREAT 5077 04:10:08,400 --> 04:10:09,080 EXPERIENCES BECAUSE THE WORK OF 5078 04:10:09,080 --> 04:10:12,680 THE INSTITUTE IS SO IMPORTANT TO 5079 04:10:12,680 --> 04:10:23,120 ALL OF UP AND SEEING THE 5080 04:10:23,760 --> 04:10:24,360 IMPLEMENTATION OF THE PLAN. 5081 04:10:24,360 --> 04:10:29,680 IT WAS GREAT TO SEE THE NEW 5082 04:10:29,680 --> 04:10:40,200 PEOPLE BROUGHT IN AND GREAT TO 5083 04:10:53,240 --> 04:10:54,880 HEAR THE AREAS DISCUSSED AT THE 5084 04:10:54,880 --> 04:10:55,160 MEETINGS. 5085 04:10:55,160 --> 04:10:58,480 TO ME THIS IS ALWAYS THE BEST 5086 04:10:58,480 --> 04:11:00,720 PART OF THE MEETING AND WHAT A 5087 04:11:00,720 --> 04:11:05,120 DIVERSITY OF AREAS WE HAVE. 5088 04:11:05,120 --> 04:11:10,040 AND TO BE ABLE TO BE IN A 5089 04:11:10,040 --> 04:11:11,880 VIRTUAL ROOM WITH EXPERTS 5090 04:11:11,880 --> 04:11:13,040 THROUGHOUT THE WORLD HAS BEEN 5091 04:11:13,040 --> 04:11:13,360 TREMENDOUS. 5092 04:11:13,360 --> 04:11:18,000 I'VE ALSO APPRECIATED THE 5093 04:11:18,000 --> 04:11:20,080 INTERACTIONS WITH NOT JUST 5094 04:11:20,080 --> 04:11:21,480 COUNCIL MEMBERS BUT OF COURSE 5095 04:11:21,480 --> 04:11:24,400 THE GRANT PEOPLE AND LEADERSHIP. 5096 04:11:24,400 --> 04:11:26,920 I WISH MORE WOULD HAVE BEEN IN 5097 04:11:26,920 --> 04:11:30,000 PERSON AND IT INCLUDES FORMER 5098 04:11:30,000 --> 04:11:30,680 COUNCIL MEMBERS AS WELL AS 5099 04:11:30,680 --> 04:11:33,760 BECAUSE MANY HAVE NOT MET IN 5100 04:11:33,760 --> 04:11:36,520 PERSON AND SOME HAVE ONLY MET IN 5101 04:11:36,520 --> 04:11:39,800 COUNCIL MEETINGS AND A FEW OF US 5102 04:11:39,800 --> 04:11:43,480 DIANA AND CLIFF TAVEN THAT I 5103 04:11:43,480 --> 04:11:44,960 HAVE KNOWN MY ENTIRE SCIENTIFIC 5104 04:11:44,960 --> 04:11:50,560 CAREER AND MARTY, IT'S GREAT TO 5105 04:11:50,560 --> 04:11:53,000 SEE YOU GUYS AND WISH WE HAD 5106 04:11:53,000 --> 04:11:54,720 DONE MORE IN PERSON-MEETINGS 5107 04:11:54,720 --> 04:11:56,240 BECAUSE THAT'S SOMETHING I 5108 04:11:56,240 --> 04:11:56,480 MISSED. 5109 04:11:56,480 --> 04:11:58,840 SINCE TWO OF YOU COMMENTED YOU 5110 04:11:58,840 --> 04:12:02,480 HAD COVID MAYBE IT WAS A WISE 5111 04:12:02,480 --> 04:12:04,120 CHOICE NOT TO HAVE THIS IN 5112 04:12:04,120 --> 04:12:05,760 MEETING BUT I WISH WE COULD HAVE 5113 04:12:05,760 --> 04:12:06,920 BEEN THERE ANYWAY. 5114 04:12:06,920 --> 04:12:10,920 I THINK WE ALL HAVE OUR OWN 5115 04:12:10,920 --> 04:12:13,200 INDIVIDUAL AREAS OF EXPERTISE 5116 04:12:13,200 --> 04:12:18,720 AND I THINK IT WAS BROUGHT UP 5117 04:12:18,720 --> 04:12:19,800 FOR MOSTLY DEVELOPMENTAL BIOLOGY 5118 04:12:19,800 --> 04:12:23,920 AND GENETICS. 5119 04:12:23,920 --> 04:12:26,920 I WANT TO POINT OUT WHAT I THINK 5120 04:12:26,920 --> 04:12:28,040 ARE IMPORTANT THINGS CHILD 5121 04:12:28,040 --> 04:12:35,040 HEALTH DEVOTES ITSELF TOO AND 5122 04:12:35,040 --> 04:12:40,520 GREAT OPPORTUNITIES AND 5123 04:12:40,520 --> 04:12:40,840 CHALLENGES. 5124 04:12:40,840 --> 04:12:42,720 MATERNAL FETAL AND CHILDHOOD 5125 04:12:42,720 --> 04:12:44,480 HEALTH WERE OFTEN OVERLOOKED BY 5126 04:12:44,480 --> 04:12:45,120 OTHER INSTITUTES. 5127 04:12:45,120 --> 04:12:46,440 IT WASN'T THE CASE WITH LINDSEY 5128 04:12:46,440 --> 04:12:49,360 TODAY AND EACH OF THE TIMES WE 5129 04:12:49,360 --> 04:12:54,720 INTERACT THE INSTITUTE LEADERS I 5130 04:12:54,720 --> 04:12:59,960 THINK IT'S A GREAT THING AND THE 5131 04:12:59,960 --> 04:13:01,680 INSTITUTE OF CHILD HEALTH AND 5132 04:13:01,680 --> 04:13:02,720 DIANA, YOU HAVE TO MAKE SURE 5133 04:13:02,720 --> 04:13:06,720 YOU'RE FRONT AND CENTER WITH ALL 5134 04:13:06,720 --> 04:13:12,920 THESE TOPICS IS IMPORTANT. 5135 04:13:12,920 --> 04:13:13,800 WE HEARD ABOUT THINGS YOU'RE 5136 04:13:13,800 --> 04:13:18,720 DOING TO LEAD THE INSTITUTES BUT 5137 04:13:18,720 --> 04:13:25,360 AS THINGS GET LEFT OUT AND AS A 5138 04:13:25,360 --> 04:13:29,440 GENETICISTS THE BIG PROJECT IS 5139 04:13:29,440 --> 04:13:30,280 ALL OF US BUT IT DOESN'T INCLUDE 5140 04:13:30,280 --> 04:13:40,160 CHILDREN ONLY ADULTS. 5141 04:13:40,160 --> 04:13:42,200 AND CHILDREN'S HEALTH IS REALLY 5142 04:13:42,200 --> 04:13:45,840 IMPORTANT AND CHILDREN'S 5143 04:13:45,840 --> 04:13:46,320 SEQUENCING AS WELL. 5144 04:13:46,320 --> 04:13:55,640 WE WANT IT TO BE ALL OF US AND 5145 04:13:55,640 --> 04:13:56,800 THEY DON'T HAVE INFRASTRUCTURE 5146 04:13:56,800 --> 04:13:58,360 TO TAKE CHILDREN SO I'M HAPPY 5147 04:13:58,360 --> 04:13:59,640 YOU'RE LEADING A GROUP THAT'S 5148 04:13:59,640 --> 04:14:02,960 GOING TO FIGURE OUT WAYS TO MAKE 5149 04:14:02,960 --> 04:14:12,960 SURE THAT MOVES FORWARD. 5150 04:14:12,960 --> 04:14:14,920 IT'S IMPORTANT THE CHILD HEALTH 5151 04:14:14,920 --> 04:14:18,960 IS INVOLVED AND THE OTHER IS 5152 04:14:18,960 --> 04:14:22,400 DEVELOPMENT BIOLOGY AND MATERNAL 5153 04:14:22,400 --> 04:14:24,440 FETAL MEDICINE TO CHILDHOOD. 5154 04:14:24,440 --> 04:14:26,720 I THINK YOU PROBABLY ALL THINK 5155 04:14:26,720 --> 04:14:29,040 ABOUT THIS OCCASIONALLY BUT FOR 5156 04:14:29,040 --> 04:14:30,440 ME IT SEEMS MANY PROBLEMS AND 5157 04:14:30,440 --> 04:14:33,280 ISSUES WE SEE EVEN IN ADULTHOOD 5158 04:14:33,280 --> 04:14:36,800 HAVE THEIR ONSET IN CHILDHOOD 5159 04:14:36,800 --> 04:14:38,600 AND EVEN FETAL LIFE. 5160 04:14:38,600 --> 04:14:41,680 YOU HAVE TO LOOK BACK TO THESE 5161 04:14:41,680 --> 04:14:42,960 TIME POINTS FOR THINGS THAT 5162 04:14:42,960 --> 04:14:45,640 HAPPEN IN ADULT AND THINGS THAT 5163 04:14:45,640 --> 04:14:47,480 ARE IN IN ALS AND THINGS 5164 04:14:47,480 --> 04:14:49,120 INVOLVED ARE IN THE FETUS FOR 5165 04:14:49,120 --> 04:14:50,720 THINGS THAT AFFECT NEWBORNS, 5166 04:14:50,720 --> 04:14:54,120 CHILDREN OR AS WE HEARD FROM OUR 5167 04:14:54,120 --> 04:14:55,560 PATIENT TODAY AS SHE GETS MORE 5168 04:14:55,560 --> 04:14:56,760 AND MORE INTO ADULTHOOD. 5169 04:14:56,760 --> 04:14:58,240 THESE ARE THINGS ARE HAPPENING 5170 04:14:58,240 --> 04:15:00,960 EARLY ON SO THIS IS A VERY 5171 04:15:00,960 --> 04:15:11,240 IMPORTANT AREA. 5172 04:15:12,640 --> 04:15:14,760 WE'VE SEEN ROW PROPOSALS WITH 5173 04:15:14,760 --> 04:15:16,440 MODEL SYSTEMS AND HAVE TO 5174 04:15:16,440 --> 04:15:20,680 CONTINUE TO LOOK AT THE HUMANIST 5175 04:15:20,680 --> 04:15:23,320 MODEL SYSTEM AND I HOPE YOU GUYS 5176 04:15:23,320 --> 04:15:26,280 SEE MORE EMBRYONIC STEM CELL 5177 04:15:26,280 --> 04:15:28,160 WORK TO GET BACK TO THE HUMAN ON 5178 04:15:28,160 --> 04:15:36,600 SOME OF THESE ASPECTS AS WELL. 5179 04:15:36,600 --> 04:15:47,120 I HOPE WE GET BACK TO MORE IN 5180 04:15:48,280 --> 04:15:51,480 UTERO THERAPIES EITHER SOMEONE 5181 04:15:51,480 --> 04:15:52,880 WRITING GRANTS TO CHILD HEALTH 5182 04:15:52,880 --> 04:15:57,920 AND PROBABLY THE MOST IMPORTANT 5183 04:15:57,920 --> 04:16:05,800 CHALLENGE IS WE'RE IN THE 5184 04:16:05,800 --> 04:16:06,320 POST-DOBS DITION AND THE 5185 04:16:06,320 --> 04:16:07,360 RESEARCH AND IMPORTANCE TO ALL 5186 04:16:07,360 --> 04:16:12,560 OF US ARE BEING CHALLENGED AND 5187 04:16:12,560 --> 04:16:14,960 THAT'S MATERNAL FETAL MEDICINE 5188 04:16:14,960 --> 04:16:17,440 AND REPRODUCTIVE FREEDOM OF 5189 04:16:17,440 --> 04:16:18,800 CHOICE AND AS I SEE IT ALL THE 5190 04:16:18,800 --> 04:16:21,320 TIME IN TERMS OF WOMEN AND 5191 04:16:21,320 --> 04:16:22,640 FAMILIES FACED WITH DIFFICULTY 5192 04:16:22,640 --> 04:16:24,400 DECISIONS AND NOW THEY'RE 5193 04:16:24,400 --> 04:16:26,120 PREVENTED FROM DOING THESE 5194 04:16:26,120 --> 04:16:26,440 THINGS. 5195 04:16:26,440 --> 04:16:28,400 IT'S KIND OF -- I'M SORRY, I 5196 04:16:28,400 --> 04:16:29,680 ENDED WITH THAT ONE BUT IT'S A 5197 04:16:29,680 --> 04:16:31,640 CHALLENGE WE ALL HAVE TO MAKE 5198 04:16:31,640 --> 04:16:34,240 SURE WE PUSHBACK AGAINST AND 5199 04:16:34,240 --> 04:16:36,360 MAKE SURE WE HELP TO TRY TO 5200 04:16:36,360 --> 04:16:36,560 SOLVE. 5201 04:16:36,560 --> 04:16:39,160 I WANT TO THANK ALL OF YOU FOR 5202 04:16:39,160 --> 04:16:41,160 BEING ON COUNCIL WITH ME AND 5203 04:16:41,160 --> 04:16:42,800 THANK YOU, DIANA IN PARTICULAR 5204 04:16:42,800 --> 04:16:47,760 FOR YOUR LEADERSHIP AND WAIT TO 5205 04:16:47,760 --> 04:16:48,240 HEAR GREAT THINGS. 5206 04:16:48,240 --> 04:16:50,080 I WON'T FEEL BADLY ABOUT FILLING 5207 04:16:50,080 --> 04:16:52,880 OUT THE MYRIAD OF FORMS SEEMS 5208 04:16:52,880 --> 04:16:54,800 LIKE EVERY TWO TO THREE MONTHS 5209 04:16:54,800 --> 04:16:56,680 EVEN AFTER WE GET VETTED BUT 5210 04:16:56,680 --> 04:16:57,880 THAT'S ANOTHER POINT. 5211 04:16:57,880 --> 04:16:58,960 THANK YOU, AGAIN, DIANA. 5212 04:16:58,960 --> 04:17:09,320 >> THANK YOU, TONY. 5213 04:17:09,560 --> 04:17:11,640 WE HAVE PROTOCOLS WITH CHILDREN 5214 04:17:11,640 --> 04:17:12,920 BUT GENERALLY OVER 3 YEARS OLD 5215 04:17:12,920 --> 04:17:14,280 AND THAT'S A PROBLEM BECAUSE IF 5216 04:17:14,280 --> 04:17:18,160 WE WANT GENE THERAPY TO TREAT 5217 04:17:18,160 --> 04:17:21,040 INFANTS WITH DEGENERATIVE 5218 04:17:21,040 --> 04:17:27,760 DISEASE WE WAIT 3 YEARS IT'S TOO 5219 04:17:27,760 --> 04:17:29,240 LATE AND WE LOOK AT THE 5220 04:17:29,240 --> 04:17:30,440 INFRASTRUCTURE WE'LL NEED TO 5221 04:17:30,440 --> 04:17:31,400 MAKE THAT WORK. 5222 04:17:31,400 --> 04:17:34,640 THANK YOU FOR YOUR SERVICE AND 5223 04:17:34,640 --> 04:17:35,840 COMMENTS. 5224 04:17:35,840 --> 04:17:46,160 NEXT McN -- MS. NEUBERGER. 5225 04:17:46,160 --> 04:17:48,040 >> IT'S BEEN A PLEASURE TO WORK 5226 04:17:48,040 --> 04:17:49,280 WITH THIS GROUP OF COLLEAGUES. 5227 04:17:49,280 --> 04:17:52,800 I'VE SERVED ON THE COUNCIL THE 5228 04:17:52,800 --> 04:17:54,880 PAST FOUR YEARS AND ALWAYS 5229 04:17:54,880 --> 04:17:57,560 IMPRESSED BY THE PROFESSIONALISM 5230 04:17:57,560 --> 04:18:07,480 AND KNOWLEDGE OF THE NICHD STAFF 5231 04:18:07,480 --> 04:18:08,680 PROGRAM ADMINISTRATORS AND 5232 04:18:08,680 --> 04:18:10,880 DR. BIANCHI. 5233 04:18:10,880 --> 04:18:11,680 IT'S BEEN AN INCREDIBLE 5234 04:18:11,680 --> 04:18:12,600 EXPERIENCE. 5235 04:18:12,600 --> 04:18:15,680 SO REWARDING FOR ME. 5236 04:18:15,680 --> 04:18:17,520 I AM NOT A CLINICIAN OR 5237 04:18:17,520 --> 04:18:17,800 RESEARCHER. 5238 04:18:17,800 --> 04:18:19,560 I WAS A NURSE AND WENT TO LAW 5239 04:18:19,560 --> 04:18:20,760 SCHOOL. 5240 04:18:20,760 --> 04:18:21,400 I'VE BEEN PRACTICING LAW ABOUT 5241 04:18:21,400 --> 04:18:30,600 34 YEARS BUT I DO WORK FOR A 5242 04:18:30,600 --> 04:18:32,400 PEDIATRIC HEALTH SYSTEM AND WHAT 5243 04:18:32,400 --> 04:18:33,720 GETS DISCUSSED IS RELEVANT TO 5244 04:18:33,720 --> 04:18:38,520 WHAT WE DO AS A HEALTH SYSTEM 5245 04:18:38,520 --> 04:18:40,000 AND INTERESTING. 5246 04:18:40,000 --> 04:18:41,200 I APPRECIATE ALL THE KNOWLEDGE 5247 04:18:41,200 --> 04:18:42,560 AND UNDERSTANDING OF THE 5248 04:18:42,560 --> 04:18:45,360 CRITICAL RESEARCH BEING DONE. 5249 04:18:45,360 --> 04:18:47,720 I HOPE IN SOME WAY I'VE BEEN 5250 04:18:47,720 --> 04:18:52,360 ABLE TO CONTRIBUTE AND PROVIDE 5251 04:18:52,360 --> 04:18:55,720 GOOD FEEDBACK TO THIS COMMUNITY. 5252 04:18:55,720 --> 04:19:06,240 IN TERMS OF FEED BACK OVER ALL. 5253 04:19:08,840 --> 04:19:12,880 THE PATIENT'S STORIES GIVE US A 5254 04:19:12,880 --> 04:19:15,600 GLIMPSE TO THE CHALLENGES THESE 5255 04:19:15,600 --> 04:19:17,320 PEOPLE EXPERIENCE AND TO ME 5256 04:19:17,320 --> 04:19:18,000 THAT'S VERY SPECIAL. 5257 04:19:18,000 --> 04:19:21,120 THE INSTITUTE HAS DONE A GREAT 5258 04:19:21,120 --> 04:19:22,000 JOB ORIENTING US. 5259 04:19:22,000 --> 04:19:27,600 I CAN'T BELIEVE IT'S BEEN FOUR 5260 04:19:27,600 --> 04:19:28,680 YEARS. 5261 04:19:28,680 --> 04:19:30,480 I WOULD HAVE LOVED MORE 5262 04:19:30,480 --> 04:19:32,240 IN-PERSON MEETING DURING THE 5263 04:19:32,240 --> 04:19:34,200 PANDEMIC BUT IT WAS TOO 5264 04:19:34,200 --> 04:19:35,800 CHALLENGING AND THE ORIENTATION 5265 04:19:35,800 --> 04:19:37,640 YOU GAVE US WAS EXTRAORDINARY. 5266 04:19:37,640 --> 04:19:38,960 THE BUDDY SYSTEM HAS BEEN 5267 04:19:38,960 --> 04:19:39,200 FANTASTIC. 5268 04:19:39,200 --> 04:19:42,440 I WANT TO SEND A SPECIAL THANKS 5269 04:19:42,440 --> 04:19:44,560 TO DR. ROSLYN KING. 5270 04:19:44,560 --> 04:19:46,960 SHE'S BEEN SUCH A WONDERFUL 5271 04:19:46,960 --> 04:19:49,960 BUDDY TO ME. 5272 04:19:49,960 --> 04:19:52,240 THE CONSISTENTLY CHECKS IN 5273 04:19:52,240 --> 04:19:54,120 MAKING SURE I HAVE THE 5274 04:19:54,120 --> 04:19:57,720 INFORMATION AND ASSISTANCE ANDS 5275 04:19:57,720 --> 04:19:59,400 I NEED TO PARTICIPATE IN A 5276 04:19:59,400 --> 04:20:01,560 MEANINGFUL WAY AND THANK YOU ALL 5277 04:20:01,560 --> 04:20:06,280 FOR THIS INCREDIBLE OPPORTUNITY 5278 04:20:06,280 --> 04:20:14,560 AND THE VALUABLE WORK AND THE 5279 04:20:14,560 --> 04:20:16,360 WORK FOR OUR PEDIATRIC 5280 04:20:16,360 --> 04:20:16,640 POPULATION. 5281 04:20:16,640 --> 04:20:20,600 IT'S BEEN A GREAT EXPERIENCE. 5282 04:20:20,600 --> 04:20:24,200 >> YOU'VE BROUGHT A UNIQUE 5283 04:20:24,200 --> 04:20:25,480 PERSPECTIVE TO COUNCIL AND 5284 04:20:25,480 --> 04:20:26,120 APPRECIATE YOUR EFFORTS AND TIME 5285 04:20:26,120 --> 04:20:26,920 SPENT. 5286 04:20:26,920 --> 04:20:30,120 >> THANK YOU. 5287 04:20:30,120 --> 04:20:32,920 >> WE'LL GIVE THE LAST WORD TO 5288 04:20:32,920 --> 04:20:35,920 DR. ALAN TITA. 5289 04:20:35,920 --> 04:20:37,440 I SEE YOUR MEDICAL SCHOOL HAS A 5290 04:20:37,440 --> 04:20:38,200 NEW NAME. 5291 04:20:38,200 --> 04:20:45,120 I WASN'T AWARE OF THAT. 5292 04:20:45,120 --> 04:20:47,080 >> WE HAD A GREAT ACCOMPLISHMENT 5293 04:20:47,080 --> 04:20:49,960 AND IT'S BEEN FANTASTIC FOR THE 5294 04:20:49,960 --> 04:20:52,960 MEDICAL SCHOOL. 5295 04:20:52,960 --> 04:20:59,200 DIANA, THANK YOU VERY MUCH. 5296 04:20:59,200 --> 04:21:00,480 HE'S GRATEFUL FOR THE 5297 04:21:00,480 --> 04:21:02,480 OPPORTUNITY AND HONOR TO SERVE 5298 04:21:02,480 --> 04:21:03,760 ON COUNCIL AN HAS THOROUGHLY 5299 04:21:03,760 --> 04:21:05,200 ENJOYED IT AND FRANKLY DID NOT 5300 04:21:05,200 --> 04:21:10,840 NOTICE THE TIME GO BY. 5301 04:21:10,840 --> 04:21:18,880 I FEEL LIKE A CHILD THIS 5302 04:21:18,880 --> 04:21:20,440 INSTITUTE AND SERVED AS A P.I. 5303 04:21:20,440 --> 04:21:26,920 IN THE NETWORK CENTER AND ALSO 5304 04:21:26,920 --> 04:21:33,560 GOETH -- WORKING IN A GLOBAL 5305 04:21:33,560 --> 04:21:34,920 NETWORK AND DISORDERS NETWORK 5306 04:21:34,920 --> 04:21:40,040 AND GETTING A GOOD VIEW OF NICHD 5307 04:21:40,040 --> 04:21:44,720 WORKING ON PANELS AND REVIEW 5308 04:21:44,720 --> 04:21:46,720 WORKSHOPS AND THE CONFERENCE. 5309 04:21:46,720 --> 04:21:47,360 THIS HAS BEEN THE HIGHLIGHT FOR 5310 04:21:47,360 --> 04:21:57,440 ME. 5311 04:21:58,640 --> 04:22:00,520 I APPRECIATE THE DIFFERENT BALLS 5312 04:22:00,520 --> 04:22:01,760 NICHD HAS JUGGLED TO ACCOMPLISH 5313 04:22:01,760 --> 04:22:02,920 ITS MISSION. 5314 04:22:02,920 --> 04:22:05,920 SOMETIMES WE JUST LOOK AT IT 5315 04:22:05,920 --> 04:22:08,320 FROM OUR OWN PERSPECTIVE BUT 5316 04:22:08,320 --> 04:22:10,920 IT'S BEEN TERRIFIC TO SEE WHAT'S 5317 04:22:10,920 --> 04:22:19,280 GOING ON. 5318 04:22:19,280 --> 04:22:23,960 AND THERE'S BEEN A STRATEGIC 5319 04:22:23,960 --> 04:22:26,240 PLAN AND UNDERSTANDING AND 5320 04:22:26,240 --> 04:22:27,880 ADDRESSING THE PROBLEMS AND 5321 04:22:27,880 --> 04:22:30,840 AFFECTS OF THE PANDEMIC. 5322 04:22:30,840 --> 04:22:32,560 IN PREGNANT PEOPLE AND CHILDREN 5323 04:22:32,560 --> 04:22:35,040 AND IN ALL POPULATIONS. 5324 04:22:35,040 --> 04:22:38,920 I'M HEARTENED BY TRANSFORMATIVE 5325 04:22:38,920 --> 04:22:41,120 PROGRAMS COMING UP FROM NICHD 5326 04:22:41,120 --> 04:22:45,040 INCLUDING THE MATERNAL CENTERS 5327 04:22:45,040 --> 04:22:46,880 OF EXCELLENCE AND LOOKING AT 5328 04:22:46,880 --> 04:22:47,520 SOCIAL DETERMINATES OF HEALTH 5329 04:22:47,520 --> 04:22:49,320 AND COMMUNITY ENGAGEMENT. 5330 04:22:49,320 --> 04:22:54,880 THAT'S A NEW IMPORTANT FRONTIER 5331 04:22:54,880 --> 04:23:05,240 NICHD IS MOVING INTO. 5332 04:23:06,960 --> 04:23:08,480 AND LOOKING AT NETWORKS AND 5333 04:23:08,480 --> 04:23:10,920 GREAT TO SEE THE CONTINUAL 5334 04:23:10,920 --> 04:23:15,560 ENGAGEMENT IN GLOBAL HEALTH 5335 04:23:15,560 --> 04:23:22,920 WHICH HAS BEEN AMAZING AND 5336 04:23:22,920 --> 04:23:25,240 THERE'S BEEN CHANGES AND NEW 5337 04:23:25,240 --> 04:23:26,960 PEOPLE COMING TO NICHD. 5338 04:23:26,960 --> 04:23:34,320 I WANTED TO CONGRATULATE YOU FOR 5339 04:23:34,320 --> 04:23:34,960 A TERRIFIC JOB AND 5340 04:23:34,960 --> 04:23:41,080 CONGRATULATIONS THE ENTIRE NICHD 5341 04:23:41,080 --> 04:23:46,720 TEAM FOR THIS WORK DURING 5342 04:23:46,720 --> 04:23:47,480 CHALLENGING TIMES AND I HAVE 5343 04:23:47,480 --> 04:23:51,720 RESPECT FOR THE WORK AND THE 5344 04:23:51,720 --> 04:23:52,120 INDIVIDUALS. 5345 04:23:52,120 --> 04:23:58,960 THANK YOU TO MY COUNCIL BUDDY. 5346 04:23:58,960 --> 04:24:03,120 I IF I MAY GO OUT WITH ONE PLUG 5347 04:24:03,120 --> 04:24:04,520 IT'S TO CONTINUE TO ADVOCATE FOR 5348 04:24:04,520 --> 04:24:07,240 A SHORT REVIEW CYCLE FOR THE NEW 5349 04:24:07,240 --> 04:24:10,960 MECHANISM TO CONDUCT STUDIES IN 5350 04:24:10,960 --> 04:24:14,520 THE CLINICAL TRIALS NETWORK TO 5351 04:24:14,520 --> 04:24:17,600 MAKE THINGS NIMBLE. 5352 04:24:17,600 --> 04:24:18,920 RECENTLY AN PERSON HEALTH 5353 04:24:18,920 --> 04:24:21,080 EQUITIES RESEARCH NETWORK ON 5354 04:24:21,080 --> 04:24:26,600 MATERNAL AND INFANT DISPARITIES 5355 04:24:26,600 --> 04:24:30,360 PROGRAM TOOK MONTHS TO UNDER GO 5356 04:24:30,360 --> 04:24:32,640 TWO LEVELS TO AWARD NETWORKS. 5357 04:24:32,640 --> 04:24:34,120 MAYBE THE PROCESS MIGHT OFFER 5358 04:24:34,120 --> 04:24:36,440 SOME AVENUES TO CONTINUE THAT 5359 04:24:36,440 --> 04:24:36,800 CONVERSATION. 5360 04:24:36,800 --> 04:24:40,120 I WANT TO THANK ALL MEMBERS OF 5361 04:24:40,120 --> 04:24:40,360 COUNCIL. 5362 04:24:40,360 --> 04:24:42,320 IT'S BEEN A GREAT OPPORTUNITY TO 5363 04:24:42,320 --> 04:24:43,720 LEARN FROM YOU ALL AND THOSE WHO 5364 04:24:43,720 --> 04:24:48,680 CONTINUE TO CARRY THE BALL. 5365 04:24:48,680 --> 04:24:49,240 GOOD LUCK. 5366 04:24:49,240 --> 04:24:51,040 SEVERAL YEARS AGO I WAS SPEAKING 5367 04:24:51,040 --> 04:24:56,840 AT AN NICHD RETREAT. 5368 04:24:56,840 --> 04:24:58,920 MY MANTRA AT THE TIME WAS THE 5369 04:24:58,920 --> 04:25:00,920 P.O. WAS YOUR FRIEND AND I FEEL 5370 04:25:00,920 --> 04:25:10,160 THE TIME ON COUNCIL HAS BEEN 5371 04:25:10,160 --> 04:25:12,040 ATTENTIVE AND MY NEW MANTRA IS 5372 04:25:12,040 --> 04:25:13,560 NICHD IS OUR FRIEND AND LOOK 5373 04:25:13,560 --> 04:25:16,560 FORWARD TO HELPING IN ANY WAY AS 5374 04:25:16,560 --> 04:25:18,880 THE OPPORTUNITY ARISES. 5375 04:25:18,880 --> 04:25:29,240 THANK YOU VERY MUCH. 5376 04:25:32,800 --> 04:25:34,520 AND YOUR ADVOCACY HAS BEEN 5377 04:25:34,520 --> 04:25:39,480 IMPORTANT AS WE KNOW PEOPLE HAVE 5378 04:25:39,480 --> 04:25:42,520 EXPERIENCE THE COVID PANDEMIC 5379 04:25:42,520 --> 04:25:47,600 DIFFERENTLY AND MORE SEVERELY 5380 04:25:47,600 --> 04:25:49,000 PARTICULARLY IF THEY HADN'T BEEN 5381 04:25:49,000 --> 04:25:50,440 VACCINATED. 5382 04:25:50,440 --> 04:25:52,960 I KNOW ALL OF YOU HAD BEEN 5383 04:25:52,960 --> 04:25:54,320 INCREDIBLY ENGAGED AND IT'S BEEN 5384 04:25:54,320 --> 04:25:56,320 A JOY HAVING YOU ON OUR ADVISORY 5385 04:25:56,320 --> 04:25:56,680 COUNCIL. 5386 04:25:56,680 --> 04:25:59,320 WE KNOW IT DOES TAKE YOUR TIME 5387 04:25:59,320 --> 04:26:01,280 BUT I'M GLAD TO HEAR EVERYONE 5388 04:26:01,280 --> 04:26:06,440 GOT SOMETHING OUT OF IT. 5389 04:26:06,440 --> 04:26:07,720 AND HAVE AN EXPANDED 5390 04:26:07,720 --> 04:26:08,680 APPRECIATION FOR OUR PORTFOLIO 5391 04:26:08,680 --> 04:26:10,960 AND SOME OF THE THINGS WE 5392 04:26:10,960 --> 04:26:12,480 GRAPPLE WITH AND WE CAN TALK 5393 04:26:12,480 --> 04:26:13,600 MORE ABOUT THAT TOMORROW IN THE 5394 04:26:13,600 --> 04:26:14,320 CLOSED SESSION. 5395 04:26:14,320 --> 04:26:15,720 NOW I'LL TURN THE MEETING BACK 5396 04:26:15,720 --> 04:26:16,800 OVER TO REBEKAH. 5397 04:26:16,800 --> 04:26:17,320 WE'RE ALMOST IN THE HOME 5398 04:26:17,320 --> 04:26:18,600 STRETCH. 5399 04:26:18,600 --> 04:26:21,160 WE'RE GOING TO TALK ABOUT THE 5400 04:26:21,160 --> 04:26:23,200 CONCEPT CLEARANCE PORTION OF THE 5401 04:26:23,200 --> 04:26:24,440 MEETING. 5402 04:26:24,440 --> 04:26:25,520 AGAIN, THANK YOU EVERYONE AND 5403 04:26:25,520 --> 04:26:30,480 OVER TO REBEKAH. 5404 04:26:30,480 --> 04:26:31,360 >> ALL RIGHT. 5405 04:26:31,360 --> 04:26:31,800 THANK YOU SO MUCH. 5406 04:26:31,800 --> 04:26:39,560 WE HAVE SEVEN CONCEPTS FOR YOUR 5407 04:26:39,560 --> 04:26:39,920 CONSIDERATION. 5408 04:26:39,920 --> 04:26:41,720 I'LL ASK THE STAFF TO PROVIDE A 5409 04:26:41,720 --> 04:26:42,960 BRIEF OVERVIEW OF THE INITIATIVE 5410 04:26:42,960 --> 04:26:44,560 AND ASK COUNCIL FOR ANY 5411 04:26:44,560 --> 04:26:45,160 DISCUSSION. 5412 04:26:45,160 --> 04:26:46,720 AT THE CONCLUSION OF THE 5413 04:26:46,720 --> 04:26:49,640 DISCUSSION I'LL ASK COUNCIL 5414 04:26:49,640 --> 04:26:50,480 MEMBERS WHETHER THEY CONFIRM AND 5415 04:26:50,480 --> 04:26:51,840 WE'LL TAKE A VOTE AND THEN WE'LL 5416 04:26:51,840 --> 04:26:54,880 MOVE ON. 5417 04:26:54,880 --> 04:26:57,080 THE VERY FIRST CONCEPT IS FROM 5418 04:26:57,080 --> 04:26:59,640 THE MATERNAL PEDIATRIC 5419 04:26:59,640 --> 04:27:01,240 INFECTIOUS DISEASE BRANCH AND 5420 04:27:01,240 --> 04:27:03,640 IT'S ALL USING ARCHIVE DATA AND 5421 04:27:03,640 --> 04:27:09,200 SPECIMEN COLLECTIONS TO ADVANCE 5422 04:27:09,200 --> 04:27:16,000 MATERNAL AIDS RESEARCH. 5423 04:27:16,000 --> 04:27:19,360 >> IT'S SEEKING COUNCIL APPROVAL 5424 04:27:19,360 --> 04:27:22,080 FOR USING DATA IN SPECIMEN 5425 04:27:22,080 --> 04:27:24,000 COLLECTIONS TO ADVANCE MATERNAL 5426 04:27:24,000 --> 04:27:25,720 AND PEDIATRIC HIV RESEARCH AND 5427 04:27:25,720 --> 04:27:27,200 ADDRESS THE NEED FOR DATA 5428 04:27:27,200 --> 04:27:29,120 SHARING AND TRANSLATION OF 5429 04:27:29,120 --> 04:27:31,320 RESEARCH TO ANSWER IMPORTANT 5430 04:27:31,320 --> 04:27:37,440 QUESTIONS IN MATERNAL AND 5431 04:27:37,440 --> 04:27:38,920 PEDIATRIC HIV AND LOOK AT 5432 04:27:38,920 --> 04:27:40,720 STUDIES BY SUPPORTING SECONDARY 5433 04:27:40,720 --> 04:27:42,920 ANALYSIS OF THE COLLECTED DATA 5434 04:27:42,920 --> 04:27:46,400 AND SPECIMENS. 5435 04:27:46,400 --> 04:27:48,880 THE NICHD REPOSITORY HAS 5436 04:27:48,880 --> 04:27:51,480 ARCHIVED SAMPLES READY FOR 5437 04:27:51,480 --> 04:27:56,400 RESEARCH AND INCLUDING THE ATM, 5438 04:27:56,400 --> 04:27:58,920 FACTS AND IMPACT. 5439 04:27:58,920 --> 04:28:01,040 THE NICHD DATA AND SPECIMEN HUB 5440 04:28:01,040 --> 04:28:03,440 DASH PROVIDES ACCESS TO THE LINK 5441 04:28:03,440 --> 04:28:08,480 TO THE SAMPLES. 5442 04:28:08,480 --> 04:28:10,480 WE SEEK INVESTMENT IN THE 5443 04:28:10,480 --> 04:28:13,880 SPECIMEN REPOSITORIES WITH THE 5444 04:28:13,880 --> 04:28:16,920 FUNDING OPPORTUNITY ANNOUNCEMENT 5445 04:28:16,920 --> 04:28:19,400 AND RESOURCES ARE ENCOURAGED TO 5446 04:28:19,400 --> 04:28:20,960 USE ARCHIVED SPECIMENS TO 5447 04:28:20,960 --> 04:28:26,400 GENERATE NEW FINDINGS AND 5448 04:28:26,400 --> 04:28:28,080 ANSWERS TO QUESTIONS OF THE 5449 04:28:28,080 --> 04:28:31,360 OFFICE OF AIDS RESEARCH. 5450 04:28:31,360 --> 04:28:32,520 WE'D LIKE TO CONTINUE THE 5451 04:28:32,520 --> 04:28:34,560 INITIATIVE AS ALREADY FUNDED 5452 04:28:34,560 --> 04:28:42,800 OVER 1,000 PROJECT THAT ALLOW 5453 04:28:42,800 --> 04:28:44,680 FOR THE EXPANSION OF THESE 5454 04:28:44,680 --> 04:28:45,160 AFFECTS. 5455 04:28:45,160 --> 04:28:55,680 >> ANY COMMENTS OR QUESTIONS? 5456 04:28:58,400 --> 04:29:00,080 HEARING NO COMMENTS, SEEING NO 5457 04:29:00,080 --> 04:29:02,600 HANDS, DO I HAVE A MOTION TO 5458 04:29:02,600 --> 04:29:05,400 APPROVE THE CONCEPT? 5459 04:29:05,400 --> 04:29:06,600 DR. MALDONADO DID YOU HAVE A 5460 04:29:06,600 --> 04:29:06,880 COMMENT? 5461 04:29:06,880 --> 04:29:10,360 >> YEAH. 5462 04:29:10,360 --> 04:29:14,640 I WANTED TO SUPPORT THIS 5463 04:29:14,640 --> 04:29:14,920 CONCEPT. 5464 04:29:14,920 --> 04:29:21,520 IT'S CRITICAL ESPECIALLY TO PULL 5465 04:29:21,520 --> 04:29:23,600 TOGETHER THE MANY YEARS AND 5466 04:29:23,600 --> 04:29:27,840 DOLLARS SPENT AND TIME SPENT ON 5467 04:29:27,840 --> 04:29:30,640 THESE DATA SETS AND REPOSITORIES 5468 04:29:30,640 --> 04:29:41,200 TO REALLY BRING TOGETHER A NEW 5469 04:29:47,000 --> 04:29:47,480 GENERATION OF RESEARCH. 5470 04:29:47,480 --> 04:29:48,920 AND INTEGRATING IN THE NEXT 5471 04:29:48,920 --> 04:29:52,880 GENERATION OF RESEARCH CAPACITY 5472 04:29:52,880 --> 04:29:58,680 IS A USEFUL WAY TO LEVERAGE 5473 04:29:58,680 --> 04:30:02,960 EXISTING RESOURCES WITH A 5474 04:30:02,960 --> 04:30:13,280 MODICUM OF EXPENSE. 5475 04:30:18,880 --> 04:30:24,320 >> DO I A NOTION -- MOTION TO 5476 04:30:24,320 --> 04:30:24,560 APPROVE. 5477 04:30:24,560 --> 04:30:25,360 >> SO MOVED. 5478 04:30:25,360 --> 04:30:26,480 >> SECOND. 5479 04:30:26,480 --> 04:30:30,920 >> USE YOUR ACTION BUTTONS TO 5480 04:30:30,920 --> 04:30:41,200 VOTE YES OR NO. 5481 04:30:52,800 --> 04:30:55,880 >> THE NEXT CONCEPT WE'LL HEAR 5482 04:30:55,880 --> 04:30:56,680 FROM DR. ALAN. 5483 04:30:56,680 --> 04:31:00,920 A NEW MEMBER OF THE 5484 04:31:00,920 --> 04:31:04,800 CONTRACEPTION RESEARCH BRANCH 5485 04:31:04,800 --> 04:31:05,520 DEVELOPMENT OF NOVEL 5486 04:31:05,520 --> 04:31:09,320 CONTRACEPTIVE METHODS. 5487 04:31:09,320 --> 04:31:11,480 >> THE PROGRAM SEEKS COUNCIL 5488 04:31:11,480 --> 04:31:14,960 APPROVAL FOR AN INITIATIVE 5489 04:31:14,960 --> 04:31:18,400 ENTITLED DEVELOPMENT OF NON 5490 04:31:18,400 --> 04:31:19,640 STROIDAL CONTRACEPTIVE METHODS 5491 04:31:19,640 --> 04:31:20,520 AND THERE'S TREMENDOUS NEED FOR 5492 04:31:20,520 --> 04:31:22,600 THIS FOR MEN AND WOMEN AND THIS 5493 04:31:22,600 --> 04:31:25,240 CONTINUES THE PARADIGM SHIFT 5494 04:31:25,240 --> 04:31:25,720 TOWARDS MORE SPECIFIC 5495 04:31:25,720 --> 04:31:29,960 CONTRACEPTIVE MODALITIES WITHOUT 5496 04:31:29,960 --> 04:31:31,880 A STEROIDAL MECHANISM AND IT 5497 04:31:31,880 --> 04:31:33,960 ALLOWS FOR FEMALE OR MALE METHOD 5498 04:31:33,960 --> 04:31:34,920 DEVELOPMENT AS WELL AS 5499 04:31:34,920 --> 04:31:38,320 DEVELOPMENT OF DELIVERY DEVICES 5500 04:31:38,320 --> 04:31:39,800 IN MULTI-PURPOSE PREVENTION 5501 04:31:39,800 --> 04:31:41,560 TECHNOLOGIES WITH CONTRACEPTIVE 5502 04:31:41,560 --> 04:31:45,280 AND ANTI-INFECTIVE CAPABILITY. 5503 04:31:45,280 --> 04:31:46,960 THE NICHD REMAINS THE LEADING 5504 04:31:46,960 --> 04:31:50,720 FUNDER OF EARLY STAGE 5505 04:31:50,720 --> 04:31:51,480 CONTRACEPTIVE RESEARCH FOR 5506 04:31:51,480 --> 04:31:52,800 MULTI-PURPOSE TECHNOLOGIES 5507 04:31:52,800 --> 04:31:54,240 THROUGHOUT THE WORLD AND 5508 04:31:54,240 --> 04:31:54,920 CONTINUES FUNDING IN THIS AREA 5509 04:31:54,920 --> 04:31:58,280 IF IS OF PARAMOUNT IMPORTANCE OF 5510 04:31:58,280 --> 04:31:58,680 THESE FIELD. 5511 04:31:58,680 --> 04:32:01,680 IN THE PREVIOUS ITERATION OF THE 5512 04:32:01,680 --> 04:32:05,880 INITIATIVE THE 61R33 HIGHLY 5513 04:32:05,880 --> 04:32:06,440 INNOVATIVE CONTRACEPTION 5514 04:32:06,440 --> 04:32:08,960 PROGRAMS WERE DEVELOP FOR MALE 5515 04:32:08,960 --> 04:32:11,920 AND FEMALE AND PREVENTION 5516 04:32:11,920 --> 04:32:12,200 TECHNOLOGY. 5517 04:32:12,200 --> 04:32:14,040 FIVE OF THE EIGHT PROGRAMS 5518 04:32:14,040 --> 04:32:17,240 TRANSITIONED TO THE R33 PHASE 5519 04:32:17,240 --> 04:32:19,240 AND TWO MALE AND THREE FEMALE. 5520 04:32:19,240 --> 04:32:22,880 THE CONCEPT ALLIANCE WITH THE 5521 04:32:22,880 --> 04:32:26,000 STRATEGIC PLAN IS IN THE 5522 04:32:26,000 --> 04:32:26,560 REPRODUCTIVE HEALTH AND 5523 04:32:26,560 --> 04:32:28,640 DEVELOPMENT OF SAFE AND 5524 04:32:28,640 --> 04:32:33,520 EFFECTIVE THERAPEUTICS AND THE 5525 04:32:33,520 --> 04:32:34,120 CONTRACEPTION BRANCH PRIORITY. 5526 04:32:34,120 --> 04:32:44,320 THANK YOU. 5527 04:32:45,160 --> 04:32:53,400 >> QUESTIONS OR COMMENTS? 5528 04:32:53,400 --> 04:32:54,880 HEARING NONE DO I HAVE A MOTION 5529 04:32:54,880 --> 04:33:02,640 TO APPROVE THE CONCEPT? 5530 04:33:02,640 --> 04:33:04,720 >> I MAKE A MOTION TO APPROVE 5531 04:33:04,720 --> 04:33:05,200 THE CONCEPT? 5532 04:33:05,200 --> 04:33:06,080 >> SECOND. 5533 04:33:06,080 --> 04:33:07,120 >> SECONDED. 5534 04:33:07,120 --> 04:33:08,400 >> ALL IN FAVOR PLEASE USE YOUR 5535 04:33:08,400 --> 04:33:18,640 VOTING BUTTON. 5536 04:33:26,640 --> 04:33:28,280 >> WE HAVE 14 YESES. 5537 04:33:28,280 --> 04:33:30,880 >> THANK YOU SO MUCH. 5538 04:33:30,880 --> 04:33:35,360 THE NEXT PERSON IS DR. CANDACE 5539 04:33:35,360 --> 04:33:37,040 TAILIN AND SHE'LL BE PRESENTING 5540 04:33:37,040 --> 04:33:43,200 CENTERS FOR RESEARCH ON HEALTH 5541 04:33:43,200 --> 04:33:53,360 DISPARITIES IN UTERINE FIBROIDS. 5542 04:33:53,360 --> 04:33:58,960 >> THE INITIATIVE WOULD LOOK AT 5543 04:33:58,960 --> 04:33:59,960 BASIC, CLINICAL AND 5544 04:33:59,960 --> 04:34:00,680 TRANSLATIONAL RESEARCH. 5545 04:34:00,680 --> 04:34:02,680 THE ULTIMATE GOAL OF THE PROGRAM 5546 04:34:02,680 --> 04:34:08,880 IS TO IMPROVE MODIFIABLE ASPECTS 5547 04:34:08,880 --> 04:34:14,160 OF THIS COMMON GYNECOLOGIC 5548 04:34:14,160 --> 04:34:15,880 CONDITIONS AND THERE'S SYMPTOMS 5549 04:34:15,880 --> 04:34:18,480 OF BLEEDING, INFERTILITY AND 5550 04:34:18,480 --> 04:34:19,120 ADVERSE PREGNANCY OUTCOMES AS 5551 04:34:19,120 --> 04:34:21,320 WELL AS SIGNIFICANT IMPACT ON 5552 04:34:21,320 --> 04:34:22,760 QUALITY OF LIFE. 5553 04:34:22,760 --> 04:34:25,560 FIBROIDS ALSO REPRESENT THE 5554 04:34:25,560 --> 04:34:30,840 LARGEST HEALTH DISPARITY IN G 5555 04:34:30,840 --> 04:34:36,800 GINE -- GYNOCOLOGIC HEALTH AND 5556 04:34:36,800 --> 04:34:38,280 BLACK WOMEN ARE SEVEN TIMES MORE 5557 04:34:38,280 --> 04:34:46,880 LIKELY TO HAVE AN MYOMECTOMY. 5558 04:34:46,880 --> 04:34:49,400 AND THERE'S A PATH TO GREATER 5559 04:34:49,400 --> 04:34:52,000 EQUITY AND FOR TREATMENT AND 5560 04:34:52,000 --> 04:34:52,280 CURE. 5561 04:34:52,280 --> 04:34:53,880 THE INITIATIVE IS RESPONSIVE TO 5562 04:34:53,880 --> 04:34:54,960 PRIORITIES ACROSS THREE 5563 04:34:54,960 --> 04:34:56,520 BRANCHES. 5564 04:34:56,520 --> 04:35:00,920 THE IMPORTANT UNITE AND STRIVE 5565 04:35:00,920 --> 04:35:01,480 INITIATIVE AND THE NICHD 5566 04:35:01,480 --> 04:35:02,960 STRATEGIC PLAN. 5567 04:35:02,960 --> 04:35:09,800 THANK YOU. 5568 04:35:09,800 --> 04:35:17,880 >> ANY COMMENCES OR QUESTIONS. 5569 04:35:17,880 --> 04:35:20,520 IS THERE A MOTION TO APPROVE? 5570 04:35:20,520 --> 04:35:22,920 >> MOTION TO APPROVE? 5571 04:35:22,920 --> 04:35:27,280 >> SECOND. 5572 04:35:27,280 --> 04:35:37,560 >> ALL IN FAVOR? 5573 04:35:46,280 --> 04:35:48,880 >> WE HAVE 14 YESES. 5574 04:35:48,880 --> 04:35:52,360 >> WE KNOW MOVE ON TO THE 5575 04:35:52,360 --> 04:35:53,360 DEVELOPMENT BIOLOGY AND 5576 04:35:53,360 --> 04:35:55,200 STRUCTURAL VARIATION BRANCH 5577 04:35:55,200 --> 04:35:56,160 PRESENTING OPPORTUNITIES FOR 5578 04:35:56,160 --> 04:36:03,960 ADVANCING REGENERATION RESEARCH. 5579 04:36:03,960 --> 04:36:05,200 >> THE PROGRAM SEEKS COUNCIL 5580 04:36:05,200 --> 04:36:07,080 APPROVAL FOR A NEW INITIATIVE 5581 04:36:07,080 --> 04:36:10,200 FOR OPPORTUNITIES FOR 5582 04:36:10,200 --> 04:36:10,960 REGENERATION RESEARCH. 5583 04:36:10,960 --> 04:36:14,960 THIS INITIATIVE ADDRESSES THE 5584 04:36:14,960 --> 04:36:18,360 ASPIRATION GOAL OF ADVANCING THE 5585 04:36:18,360 --> 04:36:21,440 ABILITY OF REGENERATIVE GAINS TO 5586 04:36:21,440 --> 04:36:24,880 GET THE BODY'S OWN PROCESSES. 5587 04:36:24,880 --> 04:36:28,000 THE DEVELOPMENT AND VARIATION 5588 04:36:28,000 --> 04:36:30,680 BRANCH AND THE NATIONAL CENTER 5589 04:36:30,680 --> 04:36:34,760 FOR REHAB RESEARCH PUBLISHED A 5590 04:36:34,760 --> 04:36:36,120 REQUEST FOR INFORMATION AND 5591 04:36:36,120 --> 04:36:40,000 ORGANIZED COMMUNITY ON THIS 5592 04:36:40,000 --> 04:36:40,240 TOPIC. 5593 04:36:40,240 --> 04:36:42,880 EACH YEAR ABOUT 1 IN 2,000 5594 04:36:42,880 --> 04:36:44,320 BABIES ARE BORN WITH DEFECTED 5595 04:36:44,320 --> 04:36:52,480 AND MORE THAN 1. 6 MILLION FACE 5596 04:36:52,480 --> 04:36:53,640 AMPUTATION. 5597 04:36:53,640 --> 04:36:58,920 WHILE SOME HAVE THE ABILITY TO 5598 04:36:58,920 --> 04:37:08,080 REGROW AMPUTATED LIMBS IN SOME 5599 04:37:08,080 --> 04:37:09,840 MAMMALS THE VARYING BRANCH 5600 04:37:09,840 --> 04:37:11,000 PROPOSES TO DO BASIC RESEARCH IN 5601 04:37:11,000 --> 04:37:13,200 ANIMAL MODELS TO ADDRESS THE 5602 04:37:13,200 --> 04:37:14,240 CRITICAL GAPS IN OUR 5603 04:37:14,240 --> 04:37:15,720 UNDERSTANDING OF KEY ASPECTS OF 5604 04:37:15,720 --> 04:37:22,960 THE REGENERATION PROCESS AND 5605 04:37:22,960 --> 04:37:24,880 TISSUE REGENERATION TO GAIN 5606 04:37:24,880 --> 04:37:30,040 INSIGHT ON PROCESSES THAT CAN BE 5607 04:37:30,040 --> 04:37:31,920 MANIPULATED TO PROMOTE LIMB 5608 04:37:31,920 --> 04:37:33,640 REGENERATION INCLUDING IN 5609 04:37:33,640 --> 04:37:35,360 MAMMALS THAT MIGHT OTHERWISE 5610 04:37:35,360 --> 04:37:37,320 LACK THE ABILITY FOR 5611 04:37:37,320 --> 04:37:37,680 REGENERATION. 5612 04:37:37,680 --> 04:37:47,840 THANK YOU. 5613 04:37:50,280 --> 04:37:53,400 >> ANY QUESTIONS OR COMMENTS? 5614 04:37:53,400 --> 04:37:56,560 >> I THINK IT'S A TIMELY CONCEPT 5615 04:37:56,560 --> 04:38:01,760 TO BRING UP BECAUSE THERE'S A 5616 04:38:01,760 --> 04:38:09,000 LOT KNOWN ABOUT LIMB 5617 04:38:09,000 --> 04:38:10,600 REGENERATION AND THE TIME IS 5618 04:38:10,600 --> 04:38:12,280 RIGHT FOR UNDERSTANDING THESE 5619 04:38:12,280 --> 04:38:14,040 TECHNOLOGIES AND REGENERATION IN 5620 04:38:14,040 --> 04:38:15,600 MODEL ORGANISMS FOR THIS TO BE 5621 04:38:15,600 --> 04:38:15,960 ADVANCED. 5622 04:38:15,960 --> 04:38:21,440 IT WOULD BE AN EXAMPLE OF USING 5623 04:38:21,440 --> 04:38:22,120 REGENERATIVE MEDICINE TECHNOLOGY 5624 04:38:22,120 --> 04:38:22,960 FOR THE FUTURE. 5625 04:38:22,960 --> 04:38:33,360 I'M SUPPORTIVE OF THIS. 5626 04:38:33,760 --> 04:38:34,360 >> ANY OTHER THOUGHTS? 5627 04:38:34,360 --> 04:38:38,800 THERE'S BEEN A MOTION TO APP 5628 04:38:38,800 --> 04:38:39,040 APPROVE. 5629 04:38:39,040 --> 04:38:40,880 >> SO MOVED. 5630 04:38:40,880 --> 04:38:41,520 >> SECOND. 5631 04:38:41,520 --> 04:38:41,880 >> SECOND. 5632 04:38:41,880 --> 04:38:52,360 >> PLEASE GO AHEAD AND VOTE. 5633 04:38:58,560 --> 04:39:08,760 >> WE HAVE 15 YESES. 5634 04:39:08,760 --> 04:39:12,080 >> NEXT IS THE CRITICAL ILLNESS 5635 04:39:12,080 --> 04:39:14,920 BRANCH PRESENTING PEDIATRIC 5636 04:39:14,920 --> 04:39:16,360 CRITICAL CARE AND SCIENTIST 5637 04:39:16,360 --> 04:39:17,880 DEVELOPMENT PROGRAM. 5638 04:39:17,880 --> 04:39:18,600 >> THANK YOU. 5639 04:39:18,600 --> 04:39:21,320 PROGRAM SEEKS COUNCIL APPROVAL 5640 04:39:21,320 --> 04:39:23,680 FOR AN INITIATIVE ENTITLED THE 5641 04:39:23,680 --> 04:39:25,240 SCIENCE DEVELOPMENT PROGRAM. 5642 04:39:25,240 --> 04:39:26,600 THE PURPOSE OF THIS NATIONAL 5643 04:39:26,600 --> 04:39:29,360 PROGRAM IS TO PROVIDE CAREER 5644 04:39:29,360 --> 04:39:31,800 DEVELOPMENT SUPPORT FOR JUNIOR 5645 04:39:31,800 --> 04:39:33,320 PEDIATRIC CRITICAL CARE 5646 04:39:33,320 --> 04:39:35,840 PHYSICIANS OR TRAUMA SURGEONS. 5647 04:39:35,840 --> 04:39:38,840 GIVEN THE DEMANDS OF TRAINING 5648 04:39:38,840 --> 04:39:40,320 AND THE ESTABLISHED RESEARCH 5649 04:39:40,320 --> 04:39:42,240 MENTORS IN THE FIELD IT'S 5650 04:39:42,240 --> 04:39:43,520 CHALLENGING TO MAINTAIN A 5651 04:39:43,520 --> 04:39:44,960 WORKFORCE OF WELL REPAIRED 5652 04:39:44,960 --> 04:39:48,600 PHYSICIAN SCIENTISTS. 5653 04:39:48,600 --> 04:39:50,800 THE PROGRAM WAS ESTABLISHED IN 5654 04:39:50,800 --> 04:39:51,000 2004. 5655 04:39:51,000 --> 04:39:52,680 THE PROGRAM WAS HIGHLY 5656 04:39:52,680 --> 04:39:53,160 SUCCESSFUL. 5657 04:39:53,160 --> 04:39:54,920 SINCE THE INCEPTION THERE'S BEEN 5658 04:39:54,920 --> 04:39:58,320 55 SCHOLARS AND 62% WENT ON TO 5659 04:39:58,320 --> 04:40:00,360 INDEPENDENT K FUNDING AND 35% 5660 04:40:00,360 --> 04:40:03,640 RECEIVED ALL U-LEVEL FUNDING. 5661 04:40:03,640 --> 04:40:04,560 DESPITE THE SUCCESS OF THE 5662 04:40:04,560 --> 04:40:07,000 PROGRAM THE DATA REMAINS SMALL. 5663 04:40:07,000 --> 04:40:08,920 THE GOAL OF THIS INITIATIVE IS 5664 04:40:08,920 --> 04:40:10,280 TO TRAIN JUNIOR INVESTIGATORS TO 5665 04:40:10,280 --> 04:40:12,440 PICK UP RESEARCH TO IMPROVE 5666 04:40:12,440 --> 04:40:14,400 OUTCOMES AMONG CRITICALLY ILL 5667 04:40:14,400 --> 04:40:16,240 AND INJURED PROGRAM AND THE 5668 04:40:16,240 --> 04:40:18,040 CONCEPT ALIGNS WITH THE NICHD'S 5669 04:40:18,040 --> 04:40:20,440 STRATEGIC PLAN AND PRIORITIES OF 5670 04:40:20,440 --> 04:40:24,800 THE TRAUMA AND CRITICAL ILLNESS 5671 04:40:24,800 --> 04:40:26,240 BRANCH TO ADVANCE THE CARE AND 5672 04:40:26,240 --> 04:40:26,880 TREATMENT OF OUR MOST VULNERABLE 5673 04:40:26,880 --> 04:40:30,920 CHILDREN. 5674 04:40:30,920 --> 04:40:41,080 THANK YOU. 5675 04:40:50,200 --> 04:40:57,360 >> CLEARLY THREERE'S A NEED FOR 5676 04:40:57,360 --> 04:40:58,920 STRONGER RESEARCH BASE AND THE 5677 04:40:58,920 --> 04:41:00,880 STATISTICS YOU CITED IS A STRONG 5678 04:41:00,880 --> 04:41:09,000 ENDORSEMENT AND I'M SUPPORTIVE. 5679 04:41:09,000 --> 04:41:10,920 AND THERE'S THERE'S A POINT 5680 04:41:10,920 --> 04:41:11,920 ABOUT THE PROTECTED TIME. 5681 04:41:11,920 --> 04:41:22,040 >> 35%. 5682 04:41:23,800 --> 04:41:24,920 >> IF THERE'S NO OTHER QUESTIONS 5683 04:41:24,920 --> 04:41:26,320 OR COMMENTS IS THERE A MOTION TO 5684 04:41:26,320 --> 04:41:26,680 APPROVE? 5685 04:41:26,680 --> 04:41:27,560 >> MOTION TO APPROVE. 5686 04:41:27,560 --> 04:41:29,360 >> SECOND. 5687 04:41:29,360 --> 04:41:29,680 >> SECOND. 5688 04:41:29,680 --> 04:41:39,960 >> PLEASE VOTE. 5689 04:41:49,600 --> 04:41:50,280 >> WE HAVE 15 YESES. 5690 04:41:50,280 --> 04:41:56,560 >> THANK YOU SO MUCH. 5691 04:41:56,560 --> 04:42:06,880 >> NEXT IS THE OBSTETRIC AND 5692 04:42:06,880 --> 04:42:07,280 PEDIATRIC BRANCH. 5693 04:42:07,280 --> 04:42:10,880 >> 5694 04:42:11,720 --> 04:42:12,920 GOOD AFTERNOON. 5695 04:42:12,920 --> 04:42:15,760 WE SEEK AN INITIATIVE ENTITLED 5696 04:42:15,760 --> 04:42:16,760 TRANSLATIVE RESEARCH AND 5697 04:42:16,760 --> 04:42:18,520 PHARMACOLOGY AND THERAPEUTICS. 5698 04:42:18,520 --> 04:42:19,800 THERAPEUTICS DISCOVERY AND 5699 04:42:19,800 --> 04:42:21,800 DEVELOPMENT FOR PEDIATRIC AND 5700 04:42:21,800 --> 04:42:23,600 PREGNANT AND LACTATING PATIENTS 5701 04:42:23,600 --> 04:42:26,480 LAGS BEHIND FOR NON-PREGNANT 5702 04:42:26,480 --> 04:42:26,800 POPULATION. 5703 04:42:26,800 --> 04:42:29,320 RESEARCH ON NEW AND RE-PURPOSED 5704 04:42:29,320 --> 04:42:30,640 THERAPEUTICS AND MODELS AND 5705 04:42:30,640 --> 04:42:32,040 OTHER TECHNOLOGIES THAT EXPLAIN 5706 04:42:32,040 --> 04:42:34,600 THE UNDERLYING MECHANISMS OF 5707 04:42:34,600 --> 04:42:35,960 DRUG ACTIONS ARE NECESSARY TO 5708 04:42:35,960 --> 04:42:37,680 DRIVE THE TREATMENT OF THESE 5709 04:42:37,680 --> 04:42:37,960 POPULATIONS. 5710 04:42:37,960 --> 04:42:39,360 THE LAST CYCLE OF THE INITIATIVE 5711 04:42:39,360 --> 04:42:41,440 WE FIND A 17 AWARDS FOR RESEARCH 5712 04:42:41,440 --> 04:42:44,160 ON NEW AND REPURPOSED 5713 04:42:44,160 --> 04:42:44,840 THERAPEUTICS MODELS AND 5714 04:42:44,840 --> 04:42:45,720 BIOMARKERS AMONG OTHERS. 5715 04:42:45,720 --> 04:42:47,440 THE PURPOSE OF THIS INITIATIVE 5716 04:42:47,440 --> 04:42:49,520 IS TO PROMOTE BASIC 5717 04:42:49,520 --> 04:42:50,120 TRANSLATIONAL AND CLINICAL 5718 04:42:50,120 --> 04:42:51,560 RESEARCH TO FIRST ADVANCE THE 5719 04:42:51,560 --> 04:42:54,400 UNDERSTANDING OF THE UNDERLYING 5720 04:42:54,400 --> 04:42:58,760 MECHANISMS OF DRUG ACCIDENTS AND 5721 04:42:58,760 --> 04:42:59,560 SECOND, TO DISCOVER NOVEL 5722 04:42:59,560 --> 04:43:01,640 THERAPEUTICS AND ENHANCE THE USE 5723 04:43:01,640 --> 04:43:02,840 OF THE EXISTING DRUGS OR DRUG 5724 04:43:02,840 --> 04:43:05,720 REPURPOSING FOR SAFER AND MORE 5725 04:43:05,720 --> 04:43:06,280 EFFECTIVE MEDICATIONS IN 5726 04:43:06,280 --> 04:43:07,320 CHILDREN AND PREGNANT AND 5727 04:43:07,320 --> 04:43:08,680 LACTATING PERSONS. 5728 04:43:08,680 --> 04:43:10,920 THIS ALIGNS WITH THE NICHD'S 5729 04:43:10,920 --> 04:43:13,160 STRATEGIC PLAN AND ALIGNS WITH 5730 04:43:13,160 --> 04:43:18,920 NUMEROUS RECOMMENDATIONS MADE BY 5731 04:43:18,920 --> 04:43:19,280 THE TASK FORCE. 5732 04:43:19,280 --> 04:43:21,720 THANK YOU. 5733 04:43:21,720 --> 04:43:22,440 >> THANK YOU. 5734 04:43:22,440 --> 04:43:25,000 OTHER QUESTION OR COMMENTS FROM 5735 04:43:25,000 --> 04:43:32,400 THIS CONCEPT? 5736 04:43:32,400 --> 04:43:33,560 NOT HEARING ANY, IS THERE A 5737 04:43:33,560 --> 04:43:34,920 MOTION TO APPROVE. 5738 04:43:34,920 --> 04:43:36,880 >> MOTION TO APPROVE. 5739 04:43:36,880 --> 04:43:37,200 >> A SECOND? 5740 04:43:37,200 --> 04:43:39,760 >> SECOND. 5741 04:43:39,760 --> 04:43:50,240 >> PLEASE GO AHEAD AND VOTE. 5742 04:43:59,360 --> 04:44:01,840 >> WE HAVE 15 YESES. 5743 04:44:01,840 --> 04:44:04,160 >> THANK YOU. 5744 04:44:04,160 --> 04:44:06,920 THE LAST CONCEPT IS FROM 5745 04:44:06,920 --> 04:44:11,800 DR. PARIZI CHIEF OF THE 5746 04:44:11,800 --> 04:44:12,960 INTELLECTUAL DISABILITIES BRANCH 5747 04:44:12,960 --> 04:44:15,920 ON INCLUDE PROJECT INITIATIVES. 5748 04:44:15,920 --> 04:44:17,080 >> THANK YOU. 5749 04:44:17,080 --> 04:44:20,600 PROGRAM SEEKS COUNCIL APPROVAL 5750 04:44:20,600 --> 04:44:24,560 FOR INITIATIVES UNDER THE 5751 04:44:24,560 --> 04:44:27,400 INCLUDE PROJECT INVESTIGATION OF 5752 04:44:27,400 --> 04:44:27,960 CO-CURRENT CONDITIONS TO 5753 04:44:27,960 --> 04:44:29,880 UNDERSTAND DOWN SYNDROME. 5754 04:44:29,880 --> 04:44:33,760 IT'S THE MOST COMMON CAUSE OF 5755 04:44:33,760 --> 04:44:35,880 INTELLECTUAL DISABILITIES AND 5756 04:44:35,880 --> 04:44:37,720 INDIVIDUALS FACE SIGNIFICANT 5757 04:44:37,720 --> 04:44:38,000 CHALLENGE. 5758 04:44:38,000 --> 04:44:39,800 IT WAS LAUNCHED TO UNDERSTAND 5759 04:44:39,800 --> 04:44:44,360 THE DOWN SYNDROME ON BASED ON 5760 04:44:44,360 --> 04:44:46,920 STUDIES AND ASSEMBLY OF A LARGE 5761 04:44:46,920 --> 04:44:48,880 COHORT OF INDIVIDUALS WITH DOWN 5762 04:44:48,880 --> 04:44:50,680 SYNDROME ACROSS THE LIFE SPAN 5763 04:44:50,680 --> 04:44:52,040 AND THREE, INCLUSIVE CLINICAL 5764 04:44:52,040 --> 04:44:54,760 TRIALS OF EXISTING AND FUTURE 5765 04:44:54,760 --> 04:44:55,080 TREATMENTS. 5766 04:44:55,080 --> 04:44:56,880 SINCE 2019 NIH HAS INVESTED MORE 5767 04:44:56,880 --> 04:44:58,680 THAN $183 MILLION IN 200 5768 04:44:58,680 --> 04:45:00,920 PROJECTS AND SUPPORTED NUMEROUS 5769 04:45:00,920 --> 04:45:01,520 TRAINING AWARDS. 5770 04:45:01,520 --> 04:45:05,160 A DATA KOOSHED -- THE 5771 04:45:06,960 --> 04:45:09,440 THE CONCEPT WILL ALLOW 5772 04:45:09,440 --> 04:45:11,000 INITIATIVES TO MEET THE GOALS OF 5773 04:45:11,000 --> 04:45:12,200 THE INCLUDE PROJECT. 5774 04:45:12,200 --> 04:45:14,720 IN FISCAL YEAR 23 THERE WAS A 5775 04:45:14,720 --> 04:45:16,840 LARGE COHORT STUDY COLLECTING 5776 04:45:16,840 --> 04:45:17,840 DATA FROM DIVERSE COMMUNITIES 5777 04:45:17,840 --> 04:45:19,360 AND A BIO BANKING INITIATIVE TO 5778 04:45:19,360 --> 04:45:20,840 ENSURE SPECIMENS ARE COLLECTED 5779 04:45:20,840 --> 04:45:25,880 IN A UNIFORM MANNER FOR BROAD 5780 04:45:25,880 --> 04:45:26,200 DISTRIBUTION. 5781 04:45:26,200 --> 04:45:28,360 INCLUDE IS BEING DEVELOPED BY 5782 04:45:28,360 --> 04:45:29,840 THE OFFICE OF THE OF NIH AND 5783 04:45:29,840 --> 04:45:31,440 NICHD IS SERVING AS THE 5784 04:45:31,440 --> 04:45:31,960 INSTITUTE OF RECORD FOR 5785 04:45:31,960 --> 04:45:33,160 CLEARANCE FOR CONCEPTS THAT 5786 04:45:33,160 --> 04:45:34,920 ARISE WITHIN THE PROJECT. 5787 04:45:34,920 --> 04:45:42,800 THANK YOU. 5788 04:45:42,800 --> 04:45:46,920 >> ANY QUESTIONS ABOUT THE 5789 04:45:46,920 --> 04:45:55,600 INITIATIVE? 5790 04:45:55,600 --> 04:45:58,880 >> THINK THIS IS AN APPEAR 5791 04:45:58,880 --> 04:45:59,840 INITIATIVE AND A LARGE 5792 04:45:59,840 --> 04:46:04,720 INVESTMENT WITH A LARGE BENEFIT 5793 04:46:04,720 --> 04:46:10,560 TO THOSE WITH DOWN SYNDROME AND 5794 04:46:10,560 --> 04:46:11,800 INTELLECTUAL DISORDERS AND COULD 5795 04:46:11,800 --> 04:46:12,440 SERVE AS A MODEL. 5796 04:46:12,440 --> 04:46:12,920 THANK YOU. 5797 04:46:12,920 --> 04:46:23,280 >> I SECOND THAT VIEW. 5798 04:46:25,440 --> 04:46:26,920 >> DO WE HAVE A MOTION TO 5799 04:46:26,920 --> 04:46:27,160 APPROVE. 5800 04:46:27,160 --> 04:46:32,840 >> SECOND? 5801 04:46:32,840 --> 04:46:43,320 >> PLEASE GO AHEAD AND VOTE. 5802 04:46:44,360 --> 04:46:47,200 >> THANK YOU, COUNCIL MEMBERS, 5803 04:46:47,200 --> 04:46:47,440 REBEKAH. 5804 04:46:47,440 --> 04:46:49,240 WE'RE NOT TOO BAD OFF. 5805 04:46:49,240 --> 04:46:52,720 THIS CONCLUDES THE FIRST DAY OF 5806 04:46:52,720 --> 04:46:53,800 OUR TWO-DAY VIRTUAL NICHD 5807 04:46:53,800 --> 04:46:54,760 ADVISORY COUNCIL MEETING. 5808 04:46:54,760 --> 04:46:55,840 I WANT TO THANK YOU ALL FOR 5809 04:46:55,840 --> 04:46:56,720 ATTENDING. 5810 04:46:56,720 --> 04:46:58,360 I ALSO WANT TO GIVE SPECIAL 5811 04:46:58,360 --> 04:47:03,080 THANKS TO OUR TWO MEMBERS WHO 5812 04:47:03,080 --> 04:47:06,400 CONFESSED THEY'RE CURRENTLY 5813 04:47:06,400 --> 04:47:07,680 EXPERIENCING COVID SO WE 5814 04:47:07,680 --> 04:47:10,920 APPRECIATE YOUR WILLINGNESS TO 5815 04:47:10,920 --> 04:47:12,360 BE WITH US WHILE HOPEFULLY YOU 5816 04:47:12,360 --> 04:47:13,160 ARE RECOVERING. 5817 04:47:13,160 --> 04:47:15,520 I LOOK FORWARD TO SEEING ALL THE 5818 04:47:15,520 --> 04:47:17,400 COUNCIL MEMBERS TOMORROW FOR THE 5819 04:47:17,400 --> 04:47:18,560 CLOSED SESSION PART OF THE 5820 04:47:18,560 --> 04:47:18,920 MEETING. 5821 04:47:18,920 --> 04:47:22,040 THE START TIME WILL BE THE SAME 5822 04:47:22,040 --> 04:47:27,080 AS IT WAS TODAY, 12:00 P.M. 5823 04:47:27,080 --> 04:47:28,880 EASTERN DAYLIGHT TIME FOR 5824 04:47:28,880 --> 04:47:29,240 COUNCIL MEMBERS. 5825 04:47:29,240 --> 04:47:30,920 EXTRAMURAL STAFF SHOULD PLAN TO 5826 04:47:30,920 --> 04:47:33,480 JOIN US AT AROUND 1:15 P.M. 5827 04:47:33,480 --> 04:47:39,480 BECAUSE WE WILL START WITH A 5828 04:47:39,480 --> 04:47:44,440 CLOSED PRESENTATION ON THE 5829 04:47:44,440 --> 04:47:45,440 INTRAMURAL PROGRAM AND HOPE 5830 04:47:45,440 --> 04:47:46,920 EVERYONE HAS A GREAT EVENING AND 5831 04:47:46,920 --> 04:47:47,960 THANK YOU FOR STAYING WITH US 5832 04:47:47,960 --> 04:47:50,520 UNTIL THE END AND PARTICULARLY 5833 04:47:50,520 --> 04:47:52,640 THE CLOSING COMMENTS OF THE 5834 04:47:52,640 --> 04:47:53,200 GRADUATING COUNCIL MEMBERS. 5835 04:47:53,200 --> 04:47:54,920 HAVE A GREAT EVENING AND WE'LL 5836 04:47:54,920 --> 04:48:05,240 SEE YOU TOMORROW.