1 00:00:05,640 --> 00:00:09,760 >>WELCOME TO 2 00:00:09,760 --> 00:00:13,520 DAY 2 OF NON-PROFIT FORUM. 3 00:00:13,520 --> 00:00:15,320 ON DAY ONE WE STUCK WITH OUR 4 00:00:15,320 --> 00:00:19,120 THEME WHICH WAS HOW TO WORK WITH 5 00:00:19,120 --> 00:00:20,560 AND DOT DOT DOT WHICH MEANT 6 00:00:20,560 --> 00:00:22,280 WHEREVER YOUR PARTNER'S GOING TO 7 00:00:22,280 --> 00:00:28,120 BE WHETHER IT'S INDUSTRY OR 8 00:00:28,120 --> 00:00:33,920 ACADEMIA OR GOVERNMENT. 9 00:00:33,920 --> 00:00:41,680 WE HEARD HIGH LEVEL 10 00:00:41,680 --> 00:00:43,520 PRESENTATIONS AND GETS IN THE 11 00:00:43,520 --> 00:00:45,160 ACTIONABLE SPACE THE 12 00:00:45,160 --> 00:00:47,520 ORGANIZATIONS ASSEMBLED TO BE 13 00:00:47,520 --> 00:00:51,680 MORE EFFECTIVE IN GARNERING THE 14 00:00:51,680 --> 00:00:53,000 PARTNERS THAT THEY NEED TO 15 00:00:53,000 --> 00:00:57,200 ADVANCE THEIR PARTICULAR 16 00:00:57,200 --> 00:00:57,440 MISSIONS. 17 00:00:57,440 --> 00:01:03,440 TODAY IS MORE OF INTERNAL WALK 18 00:01:03,440 --> 00:01:08,120 DOWN OURSELVES AT THE GOVERNMENT 19 00:01:08,120 --> 00:01:11,480 AND NONPROFIT LEVEL. 20 00:01:11,480 --> 00:01:13,240 A MAJOR FEATURE OF THE 21 00:01:13,240 --> 00:01:15,640 NON-PROFIT FORUM IS FOR THE 22 00:01:15,640 --> 00:01:18,160 DISEASE ORGANIZATIONS TO SHARE 23 00:01:18,160 --> 00:01:24,320 THEIR LESSONS LEARNED TO NETWORK 24 00:01:24,320 --> 00:01:26,120 AMONG THEMSELVES BECAUSE IN MANY 25 00:01:26,120 --> 00:01:28,960 ASPECTS THE THINGS THAT YOU'RE 26 00:01:28,960 --> 00:01:31,920 TRYING TO DO THE PEOPLE WHO HAVE 27 00:01:31,920 --> 00:01:34,440 TRIED IT BEFORE ARE THE BEST 28 00:01:34,440 --> 00:01:36,200 ONES TO GIVE YOU ADVICE. 29 00:01:36,200 --> 00:01:39,520 AND THEN ALSO BRAIN STORMING ON 30 00:01:39,520 --> 00:01:41,760 HOW TO SOLVE SOME OF THE ISSUES 31 00:01:41,760 --> 00:01:47,000 THAT FACE THE DISEASE 32 00:01:47,000 --> 00:01:47,800 ORGANIZATIONS I THINK IS 33 00:01:47,800 --> 00:01:49,200 IMPORTANT FUNCTION OF THE 34 00:01:49,200 --> 00:01:51,520 NON-PROFIT FORUM TO SERVE AS THE 35 00:01:51,520 --> 00:01:52,520 FOUNDATION FOR THAT DISCUSSION 36 00:01:52,520 --> 00:01:53,080 TO HAPPEN. 37 00:01:53,080 --> 00:01:57,520 WE'RE GOING TO START OFF WITH 38 00:01:57,520 --> 00:02:03,160 OUR USUAL FEATURE CALLED SUCCESS 39 00:02:03,160 --> 00:02:05,560 STORIES AND THESE ARE CLEARLY 40 00:02:05,560 --> 00:02:08,920 EVERYONE IS WORKING TOWARDS THE 41 00:02:08,920 --> 00:02:11,160 GOAL OF TREATMENT AND THERE'S 42 00:02:11,160 --> 00:02:13,200 UPS AND DOWNS ON THAT ROAD. 43 00:02:13,200 --> 00:02:14,880 WE LIKE TO TALK ABOUT SOME OF 44 00:02:14,880 --> 00:02:19,400 THE UPS THAT HAVE OCCURRED IN 45 00:02:19,400 --> 00:02:21,000 THE GROUP AND WE SEARCH FOR 46 00:02:21,000 --> 00:02:22,880 THOSE AND PICK OUT A COUPLE OF 47 00:02:22,880 --> 00:02:33,400 WHAT WE CALL SUCCESS STORIES AND 48 00:02:34,640 --> 00:02:39,920 TISH HEVEL WILL MODERATE AND 49 00:02:39,920 --> 00:02:41,800 THEIR PROGRAM IS A SUCCESS STORY 50 00:02:41,800 --> 00:02:48,040 AND TISH HAS BEEN UNBELIEVABLY 51 00:02:48,040 --> 00:02:49,200 EFFECTIVE AT DEVELOPING A 52 00:02:49,200 --> 00:02:52,360 PROGRAM TO ALLOW PEOPLE TO 53 00:02:52,360 --> 00:02:53,640 DONATE THEIR BRAINS FOR RESEARCH 54 00:02:53,640 --> 00:03:01,200 WHICH IS SO IMPORTANT NOW TO 55 00:03:01,200 --> 00:03:09,600 EXAMINE BRAIN AT THE SINGLE CELL 56 00:03:09,600 --> 00:03:14,200 HEAVILY IN DISEASES AND CONTROL 57 00:03:14,200 --> 00:03:14,680 GROUPS. 58 00:03:14,680 --> 00:03:17,320 TISH WAS RECENTLY ON NPR AND 59 00:03:17,320 --> 00:03:18,640 THAT SPURRED A LOT OF INTEREST 60 00:03:18,640 --> 00:03:23,320 IN THIS TOPIC. 61 00:03:23,320 --> 00:03:25,280 HATS OFF TO TISH AND TOE THE 62 00:03:25,280 --> 00:03:27,640 OTHER FOLKS IN THAT SESSION 63 00:03:27,640 --> 00:03:28,920 TALKING ABOUT THE THINGS THEY 64 00:03:28,920 --> 00:03:30,720 WERE ABLE TO PULL OFF IN THE 65 00:03:30,720 --> 00:03:31,320 RECENT TIME FRAME. 66 00:03:31,320 --> 00:03:33,200 NOW WE'LL HAVE A DISCUSSION HOW 67 00:03:33,200 --> 00:03:35,480 TO ACHIEVE EQUITY AND 68 00:03:35,480 --> 00:03:39,480 INCLUSIVITY IN THE WORK WE DO. 69 00:03:39,480 --> 00:03:41,480 I THINK OFTEN TIMES WE'RE VERY 70 00:03:41,480 --> 00:03:45,200 FOCUSSED ON THE GOAL IN FRONT OF 71 00:03:45,200 --> 00:03:50,800 US AND THE PEOPLE WHO KIND OF 72 00:03:50,800 --> 00:03:53,080 COME TO THE FRONT LINES BUT 73 00:03:53,080 --> 00:03:54,600 THERE'S A LOT OF PEOPLE LEFT 74 00:03:54,600 --> 00:03:56,320 BEHIND WHO DON'T KNOW WE'RE 75 00:03:56,320 --> 00:03:57,480 DOING AND MIGHT BE INTERESTED IF 76 00:03:57,480 --> 00:04:01,480 THEY KNEW WHAT WE WERE DOING OR 77 00:04:01,480 --> 00:04:02,800 MAY NEED SOME SPECIAL ATTENTION 78 00:04:02,800 --> 00:04:09,160 TO ACTUALLY BRING THEM IN THE 79 00:04:09,160 --> 00:04:13,760 FOLD PARTICULARLY PEOPLE WITH 80 00:04:13,760 --> 00:04:18,440 LOW SOCIO ECONOMIC STATUS WHO 81 00:04:18,440 --> 00:04:29,000 DON'T HAVE THE WHERE WITH ALL 82 00:04:31,280 --> 00:04:32,880 TO GET IN THE MIX AND HOW TO DO 83 00:04:32,880 --> 00:04:35,040 THAT IN THE NON-PROFIT SPACE. 84 00:04:35,040 --> 00:04:37,440 IN THE AFTERNOON THERE'LL BE 85 00:04:37,440 --> 00:04:39,600 BREAKOUT SESSIONS ACCORDING TO 86 00:04:39,600 --> 00:04:42,520 TOPICS YOU HOPEFULLY SIGNED UP 87 00:04:42,520 --> 00:04:45,160 FOR IN THEIR SURVEY AND WE'LL 88 00:04:45,160 --> 00:04:50,080 COME BACK AT THE END TO SHARE 89 00:04:50,080 --> 00:04:51,600 WHAT CAME OUT OF THE BREAKOUTS 90 00:04:51,600 --> 00:04:53,760 AND SUM UP THINGS FROM THE DAY. 91 00:04:53,760 --> 00:04:57,440 BUSY DAY AHEAD OF US. 92 00:04:57,440 --> 00:05:00,240 HIGH QUALITY SPEAKERS AND I 93 00:05:00,240 --> 00:05:03,800 THINK CERTAINLY THE PASSION AND 94 00:05:03,800 --> 00:05:05,120 ENERGY FROM YESTERDAY IS CLEARLY 95 00:05:05,120 --> 00:05:07,040 GOING TO BLEED INTO TODAY AND 96 00:05:07,040 --> 00:05:07,880 KEEP US GOING. 97 00:05:07,880 --> 00:05:12,400 WITH THAT LET ME TURN IT OVER TO 98 00:05:12,400 --> 00:05:14,880 OUR FIRST SESSION AND OUR 99 00:05:14,880 --> 00:05:17,160 MODERATOR TISH HEVEL FROM THE 100 00:05:17,160 --> 00:05:23,440 BRAIN DONOR PROJECT. 101 00:05:23,440 --> 00:05:24,720 >> THANK YOU, DR. K. AND THANK 102 00:05:24,720 --> 00:05:27,320 YOU FOR THE KIND WORDS. 103 00:05:27,320 --> 00:05:28,840 I APPRECIATE THAT. 104 00:05:28,840 --> 00:05:31,640 AS YOU MENTIONED, MOST OF US ARE 105 00:05:31,640 --> 00:05:35,080 IN THE BUSINESS OF FINDING CURES 106 00:05:35,080 --> 00:05:36,920 FOR NEUROLOGIC DISORDERS OR 107 00:05:36,920 --> 00:05:37,840 SUPPORTING PEOPLE WHO HAVE THOSE 108 00:05:37,840 --> 00:05:38,760 DISEASES OR BOTH. 109 00:05:38,760 --> 00:05:39,840 WHEN WE TALK ABOUT SUCCESS 110 00:05:39,840 --> 00:05:41,440 STORIES WE'RE TALKING ABOUT THE 111 00:05:41,440 --> 00:05:42,440 WINS ALONG THE WAY. 112 00:05:42,440 --> 00:05:44,600 NOT THE ULTIMATE GOAL YET BUT 113 00:05:44,600 --> 00:05:48,120 THE THINGS HELPING US GET 114 00:05:48,120 --> 00:05:48,840 CLOSER. 115 00:05:48,840 --> 00:05:50,800 DR. KOROSHETZ MENTIONED I'M WITH 116 00:05:50,800 --> 00:05:52,360 THE BRAIN DONOR PROJECT AND 117 00:05:52,360 --> 00:05:54,080 HAPPEN TO REPRESENT AN 118 00:05:54,080 --> 00:05:54,840 ORGANIZATION THAT HELPS PEOPLE 119 00:05:54,840 --> 00:05:56,760 BECOME BRAIN DONORS WHEN THEY 120 00:05:56,760 --> 00:05:56,920 DIE. 121 00:05:56,920 --> 00:05:58,760 SO WE MEASURE THE WINS IN TERMS 122 00:05:58,760 --> 00:06:00,560 OF FOLKS WHO TAKE STEPS NOW TO 123 00:06:00,560 --> 00:06:02,680 PLAN TO BE BRAIN DONORS WHEN THE 124 00:06:02,680 --> 00:06:04,560 TIME COMES OR THE SUCCESSES THAT 125 00:06:04,560 --> 00:06:05,400 COME FROM MORE PEOPLE KNOWING 126 00:06:05,400 --> 00:06:08,160 ABOUT THE CRITICAL NEED FOR 127 00:06:08,160 --> 00:06:09,600 BRAIN DONATION AND I'LL TALK 128 00:06:09,600 --> 00:06:10,920 MORE ABOUT THAT A LITTLE BIT 129 00:06:10,920 --> 00:06:11,560 LATER IF WE HAVE TIME. 130 00:06:11,560 --> 00:06:13,560 BUT THE CONTRIBUTORS TO THIS 131 00:06:13,560 --> 00:06:16,920 PANEL ON SUCCESS STORIES HAVE 132 00:06:16,920 --> 00:06:20,920 CRITICAL, CRITICAL TANGIBLE 133 00:06:20,920 --> 00:06:23,160 ACHIEVEMENTS TO CELEBRATE. 134 00:06:23,160 --> 00:06:27,160 THERE'S STRONG STEPS IN A 135 00:06:27,160 --> 00:06:30,760 SOLIDLY COLLECTION THAT HELP 136 00:06:30,760 --> 00:06:33,360 IMPROVE SCIENCE AND SOME ARE IN 137 00:06:33,360 --> 00:06:35,120 MILESTONES OF DIVERSITY, EQUITY 138 00:06:35,120 --> 00:06:36,720 AND INCLUSION AND WORKING 139 00:06:36,720 --> 00:06:40,560 TOWARDS ENSURING THE SCIENCES 140 00:06:40,560 --> 00:06:41,640 REPRESENTATIVE OF MORE KINDS OF 141 00:06:41,640 --> 00:06:42,400 PEOPLE. 142 00:06:42,400 --> 00:06:43,640 WE KNOW IT'S NOT COMPLETE 143 00:06:43,640 --> 00:06:43,880 OTHERWISE. 144 00:06:43,880 --> 00:06:46,120 WITH US ARE THREE SCIENTISTS WHO 145 00:06:46,120 --> 00:06:47,560 MADE SOME SIGNIFICANT PROGRESS 146 00:06:47,560 --> 00:06:49,160 IN THAT ARENA AND OTHERS. 147 00:06:49,160 --> 00:06:53,080 THEY ARE JIM BECK OF THE 148 00:06:53,080 --> 00:06:53,720 PARKINSON'S FOUNDATION. 149 00:06:53,720 --> 00:07:00,120 AGUSTIN IBANEZ OF THE REDLAT 150 00:07:00,120 --> 00:07:04,120 CONSORTIUM AND KEVIN O'CONNOR 151 00:07:04,120 --> 00:07:06,920 FROM YALE TALKING ABOUT THE 152 00:07:06,920 --> 00:07:08,640 MYASTHENIA GRAVIS FOUNDATION OF 153 00:07:08,640 --> 00:07:09,000 AMERICA. 154 00:07:09,000 --> 00:07:10,560 WE'LL BEGIN WITH DR. BECK. 155 00:07:10,560 --> 00:07:12,480 >> THANK YOU. 156 00:07:12,480 --> 00:07:13,880 I APPRECIATE THE OPPORTUNITY TO 157 00:07:13,880 --> 00:07:18,080 BE INVITED TO THE SESSION AND 158 00:07:18,080 --> 00:07:19,480 TELL YOU A LITTLE BIT ABOUT OUR 159 00:07:19,480 --> 00:07:19,800 SUCCESS. 160 00:07:19,800 --> 00:07:21,800 I'LL TALK ABOUT THE PARKINSON'S 161 00:07:21,800 --> 00:07:22,760 FOUNDATION. 162 00:07:22,760 --> 00:07:26,800 THE GOAL IS TO IMPROVE THE LIVES 163 00:07:26,800 --> 00:07:28,440 OF THOSE LIVING WITH PARKINSON'S 164 00:07:28,440 --> 00:07:29,720 DISEASE THROUGH IMPROVED CARE 165 00:07:29,720 --> 00:07:31,000 AND ADVANCING RESEARCH TOWARDS A 166 00:07:31,000 --> 00:07:33,160 CURE AND LOOK TO EMPOWER AND 167 00:07:33,160 --> 00:07:36,200 EDUCATE OUR GLOBAL COMMUNITY. 168 00:07:36,200 --> 00:07:41,480 WHAT I'LL TALK ABOUT WILL TACKLE 169 00:07:41,480 --> 00:07:43,040 THE GOALS OF OUR MISSION AS AN 170 00:07:43,040 --> 00:07:44,960 ORGANIZATION AND I THINK IS 171 00:07:44,960 --> 00:07:47,640 REPRESENTATIVE OF WHERE I HOPE 172 00:07:47,640 --> 00:07:49,280 RESEARCH CAN TAKE US MOVING 173 00:07:49,280 --> 00:07:53,120 FORWARD PARTICULARLY THROUGH OUR 174 00:07:53,120 --> 00:07:54,160 SUCCESS AND COLLABORATION. 175 00:07:54,160 --> 00:07:57,440 SO PD GENERATION IS A LARGE 176 00:07:57,440 --> 00:07:59,360 AT-HOME STUDY PRIMARILY BECAUSE 177 00:07:59,360 --> 00:08:03,160 OF COVID BUT CAN BE DONE IN THE 178 00:08:03,160 --> 00:08:04,960 CLINIC IN ESSENCE REACHING 179 00:08:04,960 --> 00:08:06,880 15,000 PEOPLE WITH PARKINSON'S 180 00:08:06,880 --> 00:08:09,040 DISEASE BY OFFERING FREE NO-COST 181 00:08:09,040 --> 00:08:10,600 GENETIC TESTING AND COUNSELLING 182 00:08:10,600 --> 00:08:13,160 TO PEOPLE WHO LIVE WITH THE 183 00:08:13,160 --> 00:08:13,760 DISEASE. 184 00:08:13,760 --> 00:08:15,480 THE FOCUS IS RECOGNIZING EVERY 185 00:08:15,480 --> 00:08:17,040 PERSON'S JOURNEY WITH 186 00:08:17,040 --> 00:08:19,560 PARKINSON'S DISEASE IS UNIQUE. 187 00:08:19,560 --> 00:08:22,480 IT'S A DEGENERATIVE NEUROLOGIC 188 00:08:22,480 --> 00:08:24,240 DISEASE WHICH TYPICALLY AFFECTS 189 00:08:24,240 --> 00:08:26,840 PEOPLE IN THEIR 60s OR OLDER AND 190 00:08:26,840 --> 00:08:28,440 UNFORTUNATELY THERE'S NO CURE. 191 00:08:28,440 --> 00:08:29,840 WE SEE EVERYONE'S PROGRESS AS 192 00:08:29,840 --> 00:08:31,480 PART OF THAT DISEASE IS UNIQUE 193 00:08:31,480 --> 00:08:35,120 AND GENETICS MAY SERVE AS A KEY 194 00:08:35,120 --> 00:08:39,360 TO UNDERSTANDING NOT ONLY THE 195 00:08:39,360 --> 00:08:43,400 BIOLOGY BUT HELP DIAGNOSE AND 196 00:08:43,400 --> 00:08:46,560 TREAT AND FOCUSSING ON THE 197 00:08:46,560 --> 00:08:47,880 TREATMENT WITH GENETICS IS 198 00:08:47,880 --> 00:08:49,640 UNIQUE IN THE REALM OF 199 00:08:49,640 --> 00:08:51,960 NEUROLOGIC DISEASE AND HAVE SEEN 200 00:08:51,960 --> 00:08:53,920 IT HAPPEN IN THE REALM OF CANCER 201 00:08:53,920 --> 00:08:56,080 WHERE THE IDEA OF PRECISION 202 00:08:56,080 --> 00:08:56,960 MEDICINE IS THERE. 203 00:08:56,960 --> 00:08:59,760 HERE WE TALK ABOUT PEOPLE WHO 204 00:08:59,760 --> 00:09:01,040 MAY HAVE A CANCER DIAGNOSIS AND 205 00:09:01,040 --> 00:09:04,680 IT HAS A UNIQUE MUTATION WHERE A 206 00:09:04,680 --> 00:09:07,240 SPECIFIC DRUG MAY TARGET THAT 207 00:09:07,240 --> 00:09:09,280 MUTATION AND STOPS THE GROWTH OF 208 00:09:09,280 --> 00:09:10,960 TUMOR CELLS. 209 00:09:10,960 --> 00:09:13,240 I THINK WE'RE ON THE CUSP OF 210 00:09:13,240 --> 00:09:15,160 THAT HAPPENING WITH PARKINSON'S 211 00:09:15,160 --> 00:09:15,400 DISEASE. 212 00:09:15,400 --> 00:09:19,360 IT'S YET TO BE PROVEN BUT THAT'S 213 00:09:19,360 --> 00:09:23,160 THE DIRECTION OF THE FUTURE OF 214 00:09:23,160 --> 00:09:25,920 PARKINSON'S THERAPIES. 215 00:09:25,920 --> 00:09:26,840 THERE'S A NUMBER OF 216 00:09:26,840 --> 00:09:28,800 PHARMACEUTICAL COMPANIES WHO 217 00:09:28,800 --> 00:09:31,720 LOOK TO TAKE THIS LEAP AND 218 00:09:31,720 --> 00:09:33,200 TREATMENT WITH PEOPLE WITH 219 00:09:33,200 --> 00:09:33,960 PARKINSON'S DISEASE WITH EARLY 220 00:09:33,960 --> 00:09:38,160 STAGE RESEARCH. 221 00:09:38,160 --> 00:09:45,000 THERE'S A PROBLEM THE COMMUNITY 222 00:09:45,000 --> 00:09:48,080 IS NOT READY AND THE GOALS OF PD 223 00:09:48,080 --> 00:09:50,000 GENERATION ARE SIMPLE. 224 00:09:50,000 --> 00:09:51,320 THROUGH GENETIC TESTING AND 225 00:09:51,320 --> 00:09:53,200 PEOPLE WITH PARKINSON'S WE HOPE 226 00:09:53,200 --> 00:09:55,200 TO ACCELERATE PRECISION MEDICINE 227 00:09:55,200 --> 00:09:57,760 FOR CLINICAL TRIAL FOR PD AND 228 00:09:57,760 --> 00:10:00,280 WANT TO UNLOCK THE IMPROVED CARE 229 00:10:00,280 --> 00:10:02,160 AND EMPOWER PATIENTS TO TAKE 230 00:10:02,160 --> 00:10:03,080 CONTROL OF THEIR DISEASE. 231 00:10:03,080 --> 00:10:05,240 THE FACT IS GENETIC TESTING IS 232 00:10:05,240 --> 00:10:12,760 NOT ROUTINE CARE FOR PEOPLE WITH 233 00:10:12,760 --> 00:10:14,800 PARKINSON'S DISEASE AND AS 234 00:10:14,800 --> 00:10:17,040 COMPANIES LOOK TO RECRUIT PEOPLE 235 00:10:17,040 --> 00:10:20,560 NO ONE KNOWS WHO HAS A GENETIC 236 00:10:20,560 --> 00:10:21,200 FORM. 237 00:10:21,200 --> 00:10:22,920 IT'S RELATIVELY RARE. 238 00:10:22,920 --> 00:10:27,000 10% TO 15% HAVE A GENETIC FORM 239 00:10:27,000 --> 00:10:28,680 OF PD AND OUR EFFORTS ARE TO 240 00:10:28,680 --> 00:10:31,840 IDENTIFY THOSE INDIVIDUALS WHO 241 00:10:31,840 --> 00:10:33,480 MAY HAVE GENETIC PD AND CAN 242 00:10:33,480 --> 00:10:34,040 PARTICIPATE IN THE CLINICAL 243 00:10:34,040 --> 00:10:35,920 TRIAL TO ACCELERATE THEM SO THEY 244 00:10:35,920 --> 00:10:37,240 DON'T FAIL FOR LACK OF 245 00:10:37,240 --> 00:10:42,040 RECRUITMENT. 246 00:10:42,040 --> 00:10:44,120 JUST NUTS AND BOLTS IS IT'S 247 00:10:44,120 --> 00:10:49,720 ELIGIBLE FOR EVERY ADULT WHO HAS 248 00:10:49,720 --> 00:10:51,560 A DIAGNOSIS OF PARKINSON'S 249 00:10:51,560 --> 00:10:54,640 DISEASE AND WE'RE OFFERS FREE 250 00:10:54,640 --> 00:10:58,000 GENETIC TESTING. 251 00:10:58,000 --> 00:10:59,800 IT'S AN EXPENSIVE CLINICAL GRADE 252 00:10:59,800 --> 00:11:02,160 TEST AND NOT ONLY USE IT FOR 253 00:11:02,160 --> 00:11:03,880 RESEARCH PURPOSES BUT RETURN 254 00:11:03,880 --> 00:11:04,680 RESULTS WITH CONFIDENCE THAT 255 00:11:04,680 --> 00:11:06,360 WHAT WE'RE REPORTING BACK IS 256 00:11:06,360 --> 00:11:06,880 ACCURATE. 257 00:11:06,880 --> 00:11:09,680 WE OFFER GENETIC COUNSELLING IN 258 00:11:09,680 --> 00:11:15,520 ENGLISH AND SPANISH. 259 00:11:15,520 --> 00:11:19,840 THAT'S UNIQUE THESE DAYS AND YOU 260 00:11:19,840 --> 00:11:21,800 MAY HEAR GENETIC TESTING 261 00:11:21,800 --> 00:11:23,200 OFFERING DOZENS OF GENES. 262 00:11:23,200 --> 00:11:26,640 WE FOCUS ON SEVEN SPECIFIC GENES 263 00:11:26,640 --> 00:11:28,680 RELEVANT TO PARKINSON'S DISEASE 264 00:11:28,680 --> 00:11:32,680 WE THINK THE MOST COMMON OF WHAT 265 00:11:32,680 --> 00:11:36,040 SAY RARE FORM OF PARKINSON'S 266 00:11:36,040 --> 00:11:37,760 DISEASE AND THE MOST RELEVANT 267 00:11:37,760 --> 00:11:40,800 LOOKING AT THE ROAD MAP OF WHERE 268 00:11:40,800 --> 00:11:42,680 PHARMACEUTICAL COMPANIES ARE 269 00:11:42,680 --> 00:11:43,760 LOOKING TO ENGAGE WITH POTENTIAL 270 00:11:43,760 --> 00:11:54,160 EXPERIMENTAL MEDICINES. 271 00:11:58,840 --> 00:12:00,560 WE BANK DNA FOR FUTURE USE AND 272 00:12:00,560 --> 00:12:02,720 WE LOOK TO HAVE ABOUT 100 SITES 273 00:12:02,720 --> 00:12:05,200 IN THE U.S. PARTICIPATING IN OUR 274 00:12:05,200 --> 00:12:06,000 STUDY. 275 00:12:06,000 --> 00:12:08,400 THE RESULT HAS BEEN TREMENDOUS. 276 00:12:08,400 --> 00:12:10,520 WE HAVE NEARLY 5,000 277 00:12:10,520 --> 00:12:12,640 PARTICIPANTS IN A LITTLE MORE 278 00:12:12,640 --> 00:12:16,880 THAN TWO YEARS FROM ALL 50 279 00:12:16,880 --> 00:12:17,800 STATES PLUS PUERTO RICO AND THE 280 00:12:17,800 --> 00:12:18,720 DEMAND HAS BEEN TREMENDOUS. 281 00:12:18,720 --> 00:12:22,080 PEOPLE ARE EXCITED BY THIS. 282 00:12:22,080 --> 00:12:24,320 I HAVE TO EMPHASIZE OUR SUCCESS 283 00:12:24,320 --> 00:12:25,920 IS NOT JUST SOMETHING DRIVEN BY 284 00:12:25,920 --> 00:12:28,320 THE FOUNDATION ALONE. 285 00:12:28,320 --> 00:12:31,160 IT'S BEEN THROUGH CLOSE 286 00:12:31,160 --> 00:12:35,160 COORDINATION WITH OUR COMMUNITY 287 00:12:35,160 --> 00:12:36,520 AND PARTICULARLY THE COMMUNITY 288 00:12:36,520 --> 00:12:38,720 WHO ARE NOT TYPICALLY 289 00:12:38,720 --> 00:12:41,400 REPRESENTED IN RESEARCH PROCESS. 290 00:12:41,400 --> 00:12:42,920 WE ARE A PARKINSON'S FOUNDATION 291 00:12:42,920 --> 00:12:46,160 AND WE HAVE PEOPLE WITH 292 00:12:46,160 --> 00:12:48,960 PARKINSON'S FIRST WE DISCUSSED 293 00:12:48,960 --> 00:12:53,120 IT WITH OUR ADVISORY COUNCIL A 294 00:12:53,120 --> 00:12:57,080 BOARD LEVEL WITH PEOPLE WITH 295 00:12:57,080 --> 00:13:00,720 PARKINSON'S AND CARETAKERS AND 296 00:13:00,720 --> 00:13:02,320 PARTNERED WITH PEOPLE WITH 297 00:13:02,320 --> 00:13:03,640 PARKINSON'S TO HELP INFORM OUR 298 00:13:03,640 --> 00:13:05,280 STUDY DESIGN AND CONSENT PROCESS 299 00:13:05,280 --> 00:13:06,960 AND ONCE ESTABLISHED THE STUDY 300 00:13:06,960 --> 00:13:09,000 AS WE TYPICALLY DO, WE INCLUDED 301 00:13:09,000 --> 00:13:13,040 A PERSON WITH PARKINSON'S AS A 302 00:13:13,040 --> 00:13:16,040 FULL MEMBER OF THE STEERING 303 00:13:16,040 --> 00:13:19,040 COMMITTEE AND THIS SAY PERSON 304 00:13:19,040 --> 00:13:21,160 WITH PARKINSON'S WHOSE VOICE IS 305 00:13:21,160 --> 00:13:24,200 HEARD AND HAS PROVIDED ESSENTIAL 306 00:13:24,200 --> 00:13:24,840 FEEDBACK AS WE LOOKED TO MOVE 307 00:13:24,840 --> 00:13:29,720 FORWARD. 308 00:13:29,720 --> 00:13:31,240 WE'VE ALSO LOOKED TO TRY TO 309 00:13:31,240 --> 00:13:34,800 REACH OUT TO COMMUNITIES NOT 310 00:13:34,800 --> 00:13:36,040 TYPICALLY REPRESENTS IN 311 00:13:36,040 --> 00:13:36,320 RESEARCH. 312 00:13:36,320 --> 00:13:38,160 WE MADE CERTAIN OUR STUDY COULD 313 00:13:38,160 --> 00:13:41,640 BE CONDUCTED COMPLETELY IN 314 00:13:41,640 --> 00:13:43,400 SPANISH FROM OUR MATERIALS 315 00:13:43,400 --> 00:13:45,200 WRITTEN IN SPANISH TO PHYSICIANS 316 00:13:45,200 --> 00:13:48,400 ABLE TO RECRUIT IN SPANISH TO 317 00:13:48,400 --> 00:13:51,320 COUNSELLING DONE IN SPANISH 318 00:13:51,320 --> 00:13:51,760 COMPLETELY. 319 00:13:51,760 --> 00:13:53,040 FOR THOSE INDIVIDUALS WHO FIND 320 00:13:53,040 --> 00:13:54,360 SPANISH IS THE LANGUAGE THEY 321 00:13:54,360 --> 00:13:56,200 WANT TO SPEAK IN PARTICULARLY 322 00:13:56,200 --> 00:13:59,040 AROUND MEDICAL ISSUES, IT'S BEEN 323 00:13:59,040 --> 00:14:03,080 INCREDIBLY HELPFUL. 324 00:14:03,080 --> 00:14:04,360 WE ALSO LOOKED TO TRAIN 325 00:14:04,360 --> 00:14:06,840 PROFESSIONALS THAT ACT AS A 326 00:14:06,840 --> 00:14:10,560 LIAISON BETWEEN THE HISPANIC 327 00:14:10,560 --> 00:14:11,720 COMMUNITY AND THE CLINICAL 328 00:14:11,720 --> 00:14:13,800 REALM, THE PHYSICIANS. 329 00:14:13,800 --> 00:14:15,160 BY TEACHING THEM ABOUT 330 00:14:15,160 --> 00:14:15,800 PARTICIPATION IN RESEARCH AS 331 00:14:15,800 --> 00:14:26,240 WELL AS GENETICS, WITH AN 332 00:14:26,240 --> 00:14:34,040 ADVISORY GROUP THEY INCREASED 333 00:14:34,040 --> 00:14:34,320 ENROLLMENT. 334 00:14:34,320 --> 00:14:36,800 THE ENROLLMENT IS NOW CLOSE TO 335 00:14:36,800 --> 00:14:39,040 14% AND WE'VE WORKED HARD TO 336 00:14:39,040 --> 00:14:45,200 REACH OUT TO HISPANIC 337 00:14:45,200 --> 00:14:55,760 COMMUNITIES WITH THE CONTINENTAL 338 00:14:57,280 --> 00:15:07,360 SUCCESS. 339 00:15:08,360 --> 00:15:11,200 AND WE HAD A REPRESENTATION 340 00:15:11,200 --> 00:15:12,760 ABOUT PARKINSON'S DISEASE AND 341 00:15:12,760 --> 00:15:14,120 MOREHOUSE AND HAVE MET WITH 342 00:15:14,120 --> 00:15:16,200 SUCCESS ON RECRUITING THOSE WHO 343 00:15:16,200 --> 00:15:19,000 ARE BLACK AND AFRICAN AMERICAN 344 00:15:19,000 --> 00:15:21,200 ANCESTRY WITHIN THE PD 345 00:15:21,200 --> 00:15:22,440 GENERATION STUDY. 346 00:15:22,440 --> 00:15:25,200 WE'VE ALSO WORKED WITH AMERICAN 347 00:15:25,200 --> 00:15:27,960 INDIAN AND ALASKAN NATIVE 348 00:15:27,960 --> 00:15:28,640 COMMUNITIES AND THESE 349 00:15:28,640 --> 00:15:32,360 COMMUNITIES THROUGH PARTNERSHIPS 350 00:15:32,360 --> 00:15:34,920 HAVE BEEN ABLE TO REACH 351 00:15:34,920 --> 00:15:36,280 COMMUNITIES NOT WELL REPRESENTED 352 00:15:36,280 --> 00:15:39,600 WITHIN RESEARCH AND PARTICULARLY 353 00:15:39,600 --> 00:15:46,080 GENETICS RESEARCH AS A WHOLE. 354 00:15:46,080 --> 00:15:49,400 HAVING REPRESENTATION IS 355 00:15:49,400 --> 00:15:51,600 IMPORTANT SCIENTIFICALLY AS WELL 356 00:15:51,600 --> 00:15:53,160 BECAUSE GENETICS ARE SO 357 00:15:53,160 --> 00:15:54,640 IMPORTANT TO UNDERSTAND A 358 00:15:54,640 --> 00:15:58,240 DISEASE THAT WHERE WE HAVE SUCH 359 00:15:58,240 --> 00:15:59,200 LITTLE INFORMATION ABOUT WHY 360 00:15:59,200 --> 00:16:00,080 PEOPLE DEVELOP THE DISEASE OR 361 00:16:00,080 --> 00:16:03,040 HOW IT PROGRESSES OR HOW TO STOP 362 00:16:03,040 --> 00:16:03,240 IT. 363 00:16:03,240 --> 00:16:05,600 WE'VE ALSO WORKED WITH LARGE 364 00:16:05,600 --> 00:16:06,440 PARTNERS AS WELL IT'S IMPORTANT 365 00:16:06,440 --> 00:16:17,000 TO ACKNOWLEDGE FROM PHARMA LIKE 366 00:16:17,280 --> 00:16:19,120 BIO GEN AND AND WE WORK WITH 367 00:16:19,120 --> 00:16:23,960 OTHER NONPROFITS LIKE THE FOX 368 00:16:23,960 --> 00:16:25,960 FOUNDATION AND GP2 WHICH IS 369 00:16:25,960 --> 00:16:28,560 INTERESTED IN THE RESEARCH 370 00:16:28,560 --> 00:16:29,200 COMPONENT OF THE GENETIC 371 00:16:29,200 --> 00:16:35,040 COMPONENT OF THE TESTING AND A 372 00:16:35,040 --> 00:16:36,880 LARGE INTERNATIONAL SOCIETY. 373 00:16:36,880 --> 00:16:39,240 I WANT TO CONCLUDE BY SAYING IF 374 00:16:39,240 --> 00:16:41,200 PEOPLE ARE INTERESTED IN WANTING 375 00:16:41,200 --> 00:16:48,880 TO LEARN MORE FEEL FREE TO YOUR 376 00:16:48,880 --> 00:16:50,120 HOLD PHONE UP TO THE SCREEN AND 377 00:16:50,120 --> 00:16:51,520 IT THE TAKE YOU TO OUR WEBSITE 378 00:16:51,520 --> 00:16:53,440 AND YOU CAN LEARN MORE ABOUT THE 379 00:16:53,440 --> 00:16:59,160 STUDY AND CAN E-MAIL US AT 380 00:16:59,160 --> 00:17:03,280 GENETICS AT PARKINSON'S.org AND 381 00:17:03,280 --> 00:17:05,000 MY E-MAIL SHOULD BE AVAILABLE 382 00:17:05,000 --> 00:17:07,600 LATER AND HAPPY TO TAKE 383 00:17:07,600 --> 00:17:09,240 QUESTIONS OUTSIDE THE PANEL. 384 00:17:09,240 --> 00:17:11,200 THANK YOU, TISH. 385 00:17:11,200 --> 00:17:13,440 >> THANK YOU. 386 00:17:13,440 --> 00:17:14,640 GREAT STUFF. 387 00:17:14,640 --> 00:17:16,400 IT'S EXCITING. 388 00:17:16,400 --> 00:17:18,560 THE NEXT PERSON IN THE LINE UP 389 00:17:18,560 --> 00:17:24,720 IS DR. AGUSTIN IBANEZ. 390 00:17:24,720 --> 00:17:35,280 IF YOU'RE READY TO GO I CANNOT 391 00:17:36,400 --> 00:17:41,760 DO IT BY MYSELF. 392 00:17:41,760 --> 00:17:49,040 SO I FIRST OF ALL I WANT TO TELL 393 00:17:49,040 --> 00:17:53,120 YOU SOME ACTIONS WE'VE BEEN 394 00:17:53,120 --> 00:17:56,880 DEVELOPING IN LATIN AMERICA. 395 00:17:56,880 --> 00:17:59,440 FIRST, QUESTION IS WHY LATIN 396 00:17:59,440 --> 00:18:01,200 AMERICA. 397 00:18:01,200 --> 00:18:04,840 AS YOU KNOW LATINOS IN U.S. AND 398 00:18:04,840 --> 00:18:06,320 ARE UNDER REPRESENTED IN 399 00:18:06,320 --> 00:18:10,800 CLINICAL TRIALS AND RESEARCH BUT 400 00:18:10,800 --> 00:18:13,800 ESPECIALLY IN LATIN AMERICA. 401 00:18:13,800 --> 00:18:16,880 PATIENTS AND FAMILIES WITH 402 00:18:16,880 --> 00:18:18,720 DEMENTIA ARE FACING HUGE 403 00:18:18,720 --> 00:18:24,880 BARRIERS AND FRAGMENTED UNSTABLE 404 00:18:24,880 --> 00:18:35,440 HEALTH SYSTEM AND THERE'S AMONG 405 00:18:35,840 --> 00:18:46,280 100% TO 250% INCREASE IN THE 406 00:18:47,160 --> 00:18:50,800 FUTURE AND THERE'S SOCIAL 407 00:18:50,800 --> 00:18:53,200 DETERMINATES AND THIS IS A 408 00:18:53,200 --> 00:18:54,560 DIVERSE UNDER REPRESENTED 409 00:18:54,560 --> 00:18:56,400 POPULATION AND FACING AN 410 00:18:56,400 --> 00:18:59,520 ENORMOUS AMOUNT OF CHALLENGES. 411 00:18:59,520 --> 00:19:04,520 CAREGIVERS IN LATIN AMERICA ARE 412 00:19:04,520 --> 00:19:07,520 AROUND THOSE WHO DON'T HAVE 413 00:19:07,520 --> 00:19:09,760 ACCESS TO FORMAL LONG-TERM CARE 414 00:19:09,760 --> 00:19:11,560 AND DON'T HAVE TRAINING OR 415 00:19:11,560 --> 00:19:11,840 PREPARATION. 416 00:19:11,840 --> 00:19:15,560 THERE'S A HUGE GENDER BIAS. 417 00:19:15,560 --> 00:19:21,200 MOST CAREGIVERS ARE WOMEN, 418 00:19:21,200 --> 00:19:23,440 MOTHERS, CAREGIVERS AND WIVES. 419 00:19:23,440 --> 00:19:29,040 SO THE FIRST THING WE TRIED TO 420 00:19:29,040 --> 00:19:30,480 DO IS TO TRY TO THINK TOGETHER 421 00:19:30,480 --> 00:19:38,200 LIKE SEVEN YEARS AGO WE WERE 422 00:19:38,200 --> 00:19:44,320 ABOUT CLINICIANS OR RESEARCHERS 423 00:19:44,320 --> 00:19:50,560 WE REALIZED WE ARE FACING WE 424 00:19:50,560 --> 00:19:55,160 DON'T HAVE A CHANCE TO GET THE 425 00:19:55,160 --> 00:19:58,520 DIAGNOSIS FOR PATIENTS 426 00:19:58,520 --> 00:19:59,600 ESPECIALLY THOSE WITH LOW 427 00:19:59,600 --> 00:20:03,240 ECONOMIC SETTINGS AND THE 428 00:20:03,240 --> 00:20:06,000 RESEARCH FOUND IN LOCAL 429 00:20:06,000 --> 00:20:07,280 COUNTRIES ARE REALLY SMALL AND 430 00:20:07,280 --> 00:20:12,640 NOT ENOUGH TO DEVELOP A STRONG 431 00:20:12,640 --> 00:20:13,040 RESEARCH. 432 00:20:13,040 --> 00:20:23,600 THE GROUPS WORK IN ISOLATION AND 433 00:20:24,960 --> 00:20:30,600 THEY'VE COORDINATED AND WE WERE 434 00:20:30,600 --> 00:20:33,760 ABLE TO INTEGRATE THE DIFFERENT 435 00:20:33,760 --> 00:20:37,240 COUNTRIES AND NOW WE'RE MORE 436 00:20:37,240 --> 00:20:42,800 THAN 250 EXPERTS IN THE REGION 437 00:20:42,800 --> 00:20:45,200 AND GROUPS AND STRONG CLINICAL 438 00:20:45,200 --> 00:20:45,720 GROUPS. 439 00:20:45,720 --> 00:20:49,200 WE WANT TO TRANSFORM THE KIND OF 440 00:20:49,200 --> 00:20:51,400 CHALLENGES INTO OPPORTUNITIES. 441 00:20:51,400 --> 00:20:55,800 THE FIRST STEP WE WERE ABLE TO 442 00:20:55,800 --> 00:20:57,480 PERFORM WAS TO EXPAND THE 443 00:20:57,480 --> 00:21:02,320 RESEARCH IN LATIN AMERICA 444 00:21:02,320 --> 00:21:07,720 FOUNDED BY THE NIH AND 445 00:21:07,720 --> 00:21:12,960 ALZHEIMER'S ASSOCIATION AND 446 00:21:12,960 --> 00:21:16,920 SEVERAL PRIVATE INVESTMENT WE 447 00:21:16,920 --> 00:21:19,360 WANT TO IDENTIFY WHAT MAKES 448 00:21:19,360 --> 00:21:23,800 LATIN AMERICANS SPECIAL. 449 00:21:23,800 --> 00:21:29,160 THERE'S TWO SOURCES OF RISK 450 00:21:29,160 --> 00:21:31,640 FACTORS ONE IS THE SOCIAL 451 00:21:31,640 --> 00:21:36,920 DETERMINATES OF HEALTH AND 452 00:21:36,920 --> 00:21:40,640 THERE'S HIGH INEQUALITY AROUND 453 00:21:40,640 --> 00:21:45,880 THE WORLD AND THERE'S VIOLENCE, 454 00:21:45,880 --> 00:21:48,320 INSECURITY, HOUSING, ECONOMIC 455 00:21:48,320 --> 00:21:50,920 STABILITY THAT IMPACTS THESE AND 456 00:21:50,920 --> 00:21:57,200 THERE'S MODIFIABLE RISK FACTORS 457 00:21:57,200 --> 00:22:03,320 LATIN AMERICA HAVE 56% OF THE 458 00:22:03,320 --> 00:22:08,440 PRESENTATION OF DEMENTIAS BY 459 00:22:08,440 --> 00:22:11,440 RISK FACTORS AND THERE'S 460 00:22:11,440 --> 00:22:19,800 DIFFERENT ANCESTRIES AND THE 461 00:22:19,800 --> 00:22:22,680 OTHER AREAS ARE EXTREMELY UNDER 462 00:22:22,680 --> 00:22:23,200 REPRESENTED. 463 00:22:23,200 --> 00:22:28,960 IN REDLAT WE'RE NOW COLLECTING 464 00:22:28,960 --> 00:22:32,560 PARTICIPANTS AND DATA AND WE 465 00:22:32,560 --> 00:22:36,400 HAVE COLLECTED SOME AND WE'RE 466 00:22:36,400 --> 00:22:41,480 GOING TO COMPARE THE GENETIC 467 00:22:41,480 --> 00:22:46,080 STUDIES IN THE LATIN AMERICA 468 00:22:46,080 --> 00:22:52,480 POPULATION AND WE ARE ALSO 469 00:22:52,480 --> 00:22:59,280 DEVELOPING FOR NEUROIMAGING AND 470 00:22:59,280 --> 00:23:02,880 COGNITIVE TASKS HAVE BEEN FOR 471 00:23:02,880 --> 00:23:04,720 EUROPEAN OR U.S. POPULATIONS. 472 00:23:04,720 --> 00:23:07,160 SO WE HAVE BEEN DOING A HUGE 473 00:23:07,160 --> 00:23:13,200 WORK IN TRYING TO HARMONIZE THE 474 00:23:13,200 --> 00:23:21,240 PROTOCOL ACROSS THE CONSORTIA 475 00:23:21,240 --> 00:23:25,240 AND WE ARE COMPARING THIS 476 00:23:25,240 --> 00:23:35,160 AGAINST U.S. PARTICIPANTS. 477 00:23:35,160 --> 00:23:39,840 SO WE CREATED THE INSTITUTE THAT 478 00:23:39,840 --> 00:23:44,600 IS A LOCAL WILL LOCATION IN 479 00:23:44,600 --> 00:23:49,200 CHILE TRYING TO DEVELOP A LOCAL 480 00:23:49,200 --> 00:23:57,400 TEAM AND THIS IS AN INSTITUTE AT 481 00:23:57,400 --> 00:24:01,760 UCSF AND WE PROVIDE 18 FACULTY 482 00:24:01,760 --> 00:24:08,160 POSITIONS, 100% DEVOTED TO 483 00:24:08,160 --> 00:24:15,760 RESEARCH AND WE ARE OFFERING 484 00:24:15,760 --> 00:24:20,000 GRANTS FOR LATIN AMERICAN TEAMS 485 00:24:20,000 --> 00:24:23,240 AND A MULTI-OMICS APPROACH TO 486 00:24:23,240 --> 00:24:28,640 UNDERSTAND DEMENTIA. 487 00:24:28,640 --> 00:24:30,280 SO IN THE LESS THAN SIX YEARS 488 00:24:30,280 --> 00:24:34,280 WE'VE BEEN ABLE TO CREATE A 489 00:24:34,280 --> 00:24:35,000 POWERFUL TEAM. 490 00:24:35,000 --> 00:24:39,120 WE HAVE PUBLISHED HUNDREDS OF 491 00:24:39,120 --> 00:24:45,200 PAPERS AND WELL RENOWN JOURNALS 492 00:24:45,200 --> 00:24:53,200 AND INVOLVED THE COMMUNITIES AND 493 00:24:53,200 --> 00:25:00,400 WE HAVE MANY WORKING IN MANY 494 00:25:00,400 --> 00:25:04,160 ASSOCIATIONS AND HAVE 12 PILOT 495 00:25:04,160 --> 00:25:11,240 GRANTS TO INCREASE THE SIGNS OF 496 00:25:11,240 --> 00:25:15,040 DEMENTIA AND WORKING ON STUDIES 497 00:25:15,040 --> 00:25:23,880 AND WE'RE ALSO CREATING A WAY TO 498 00:25:23,880 --> 00:25:25,560 LOOK AT DIVERSE POPULATIONS 499 00:25:25,560 --> 00:25:28,840 INCLUDING POLICY MAKERS AND 500 00:25:28,840 --> 00:25:29,440 PATIENTS, FAMILIES AND OTHER 501 00:25:29,440 --> 00:25:39,680 PROFESSIONS. 502 00:25:39,680 --> 00:25:44,880 WE HAVE A PLAN FOR DEMENTIA 503 00:25:44,880 --> 00:25:47,280 INVOLVING EPIDEMIOLOGICAL 504 00:25:47,280 --> 00:25:52,960 STUDIES AND CLINICAL TRIALS AND 505 00:25:52,960 --> 00:25:53,560 RESEARCH INITIATES AND PUBLIC 506 00:25:53,560 --> 00:26:03,760 POLICIES. 507 00:26:04,280 --> 00:26:09,240 WE'RE GOING TO CREATE THE FIRST 508 00:26:09,240 --> 00:26:11,200 FELLOWSHIP TO EMPOWER THOSE IN 509 00:26:11,200 --> 00:26:14,160 THE REGION WHO WANT TO MAKE AN 510 00:26:14,160 --> 00:26:16,400 IMPACT IN RESEARCH OR FOR THE 511 00:26:16,400 --> 00:26:18,960 FAMILIES OF PATIENTS WITH 512 00:26:18,960 --> 00:26:19,240 DEMENTIA. 513 00:26:19,240 --> 00:26:22,200 WE ARE ALSO STARTING TO CREATE A 514 00:26:22,200 --> 00:26:26,400 KIND OF EXTENDED MENTORING AND 515 00:26:26,400 --> 00:26:26,960 TEACHING ACROSS DIFFERENT 516 00:26:26,960 --> 00:26:30,240 OPPORTUNITIES IN THE REGION. 517 00:26:30,240 --> 00:26:32,760 THE NEXT YEAR WE WILL START TO 518 00:26:32,760 --> 00:26:33,840 INCREASE THE Ph.D. PROGRAM ON 519 00:26:33,840 --> 00:26:37,160 HEALTH IN THE REGION. 520 00:26:37,160 --> 00:26:38,480 WE ARE SUPPORTING MANY CENTERS 521 00:26:38,480 --> 00:26:44,400 IN THE REGION THROUGH FACULTY 522 00:26:44,400 --> 00:26:47,200 THROUGH CHANGE AND TRAINING AND 523 00:26:47,200 --> 00:26:51,600 WE ARE TRYING TO DEVELOP AN 524 00:26:51,600 --> 00:26:54,720 INTERNATIONAL SUPPORT BY 525 00:26:54,720 --> 00:26:59,160 DIFFERENT EUROPEAN AND 526 00:26:59,160 --> 00:27:00,480 U.S. INSTITUTIONS. 527 00:27:00,480 --> 00:27:02,120 SO WE'RE TRYING TO SUPPORT THE 528 00:27:02,120 --> 00:27:04,000 CAPACITY BUILDING. 529 00:27:04,000 --> 00:27:09,000 WE HAVE BEEN MAKING GOALS FOR 530 00:27:09,000 --> 00:27:10,560 THE GROUP FOR PEOPLE WITH 531 00:27:10,560 --> 00:27:13,840 DEMENTIA AND IMPAIRMENT IN THE 532 00:27:13,840 --> 00:27:14,040 REGION. 533 00:27:14,040 --> 00:27:19,280 THE NEED TO DEVELOP A NOVEL 534 00:27:19,280 --> 00:27:20,720 APPROACH LIKE BRINGING THE 535 00:27:20,720 --> 00:27:23,160 INVESTMENT FOR THE FUTURE OF 536 00:27:23,160 --> 00:27:27,320 BRAIN CAPITAL IN THE REGION AND 537 00:27:27,320 --> 00:27:29,160 TRYING TO CHANGE THE PRACTICES 538 00:27:29,160 --> 00:27:31,360 TO IMPROVE THE SUPPORT FOR THE 539 00:27:31,360 --> 00:27:35,720 CAREGIVERS IN THE REGION. 540 00:27:35,720 --> 00:27:39,240 WE HAVE PROVIDED MANUALS IN 541 00:27:39,240 --> 00:27:40,400 NATIVE LANGUAGE TRYING TO 542 00:27:40,400 --> 00:27:42,920 HARMONIZE THE RESEARCH AND 543 00:27:42,920 --> 00:27:44,440 TRYING TO INTRODUCE TELEMEDICINE 544 00:27:44,440 --> 00:27:49,240 AND TOOLS TO IMPROVE THE 545 00:27:49,240 --> 00:27:52,680 CONDITION OF THE PATIENTS. 546 00:27:52,680 --> 00:27:57,200 WE WANT TO TRY TO DEVELOP A 547 00:27:57,200 --> 00:28:02,120 TRULY INTEGRATED APPROACH. 548 00:28:02,120 --> 00:28:09,200 SO WE TRIED TO DO SCIENCE BUT 549 00:28:09,200 --> 00:28:19,760 THE TRANSLATION IS PART OF THE 550 00:28:20,600 --> 00:28:21,840 COMMITMENT AND CAPACITY BUILDING 551 00:28:21,840 --> 00:28:28,080 AND LOCAL IDEAS IN GLOBAL 552 00:28:28,080 --> 00:28:37,800 LANDSCAPE AND WE WANT TO ARE 553 00:28:37,800 --> 00:28:40,640 LOOK AT THE GLOBAL LANDSCAPE AND 554 00:28:40,640 --> 00:28:42,240 INFORM THE CHALLENGES INTO 555 00:28:42,240 --> 00:28:44,520 OPPORTUNITIES. 556 00:28:44,520 --> 00:28:48,480 WE WANT TO DEVELOP THE NETWORK 557 00:28:48,480 --> 00:28:50,640 BUT WE CAN BIG CHALLENGES AHEAD 558 00:28:50,640 --> 00:28:54,800 WE NEED TO GO AND WORK HARDER. 559 00:28:54,800 --> 00:28:55,240 THANK YOU SO MUCH. 560 00:28:55,240 --> 00:29:05,680 I THINK I AM FINISHED NOW. 561 00:29:10,760 --> 00:29:11,560 >> WOW. 562 00:29:11,560 --> 00:29:12,680 THANK YOU. 563 00:29:12,680 --> 00:29:14,360 THAT'S COMPLICATED WORK WITH A 564 00:29:14,360 --> 00:29:15,600 LOT OF PEOPLE. 565 00:29:15,600 --> 00:29:16,000 THAT'S FABULOUS. 566 00:29:16,000 --> 00:29:20,600 OUR NEXT PRESENTER IS DR 567 00:29:20,600 --> 00:29:21,000 DR. O'CONNOR. 568 00:29:21,000 --> 00:29:22,160 >> THANK YOU, TISH. 569 00:29:22,160 --> 00:29:22,960 THANK YOU EVERYBODY FOR YOUR 570 00:29:22,960 --> 00:29:25,240 ATTENTION THIS MORNING. 571 00:29:25,240 --> 00:29:28,560 I'D LIKE TO TURN TO SOME OF THE 572 00:29:28,560 --> 00:29:32,120 WORK WE'VE DONE WITH THE 573 00:29:32,120 --> 00:29:32,720 MYASTHENIA GRAVIS FOUNDATION 574 00:29:32,720 --> 00:29:33,400 AMERICA AND SOME PROGRESS MADE 575 00:29:33,400 --> 00:29:42,520 IN THE LAST FEW YEARS. 576 00:29:42,520 --> 00:29:44,200 SO WE SHOULD BE ON THE SLIDE 577 00:29:44,200 --> 00:29:44,840 THAT SAYS WHAT IS MYASTHENIA 578 00:29:44,840 --> 00:29:47,000 GRAVIS, RIGHT? 579 00:29:47,000 --> 00:29:57,160 >> YES. 580 00:29:58,040 --> 00:30:00,560 I WANTED TO START BY EXPLAINING 581 00:30:00,560 --> 00:30:02,160 WHAT MYASTHENIA GRAVIS IS AND 582 00:30:02,160 --> 00:30:06,480 IT'S SUPPORT THE NINDS. 583 00:30:06,480 --> 00:30:08,080 IT'S NOT A DISEASE CONSIDERED TO 584 00:30:08,080 --> 00:30:13,400 BE STRICTLY NEUROLOGICAL. 585 00:30:13,400 --> 00:30:19,560 IT'S NEUROMUSCULAR AND IT'S A 586 00:30:19,560 --> 00:30:22,600 CHRONIC AUTOIMMUNE DISEASE THAT 587 00:30:22,600 --> 00:30:26,960 INTERRUPTS NEUROMUSCULAR 588 00:30:26,960 --> 00:30:27,880 CONDITION. 589 00:30:27,880 --> 00:30:29,200 IT'S RARE. 590 00:30:29,200 --> 00:30:32,720 14 TO 40 OF 100,000 PEOPLE AND 591 00:30:32,720 --> 00:30:35,040 THIS IS WHERE THE NERVE ATTACHES 592 00:30:35,040 --> 00:30:38,640 TO THE MUSCLE AND THE IMMUNE 593 00:30:38,640 --> 00:30:39,680 SYSTEM MAKES ANTIBODIES THAT 594 00:30:39,680 --> 00:30:40,920 INTERRUPT THE TRANSMISSION FROM 595 00:30:40,920 --> 00:30:43,880 THE NERVE TO THE MUSCLE AND 596 00:30:43,880 --> 00:30:47,120 PATIENTS DUE TO THAT BECOME VERY 597 00:30:47,120 --> 00:30:47,920 FATIGUED. 598 00:30:47,920 --> 00:30:50,080 THEY HAVE SEVERE MUSCLE WEAKNESS 599 00:30:50,080 --> 00:30:52,640 AND THEY HAVE IMPAIRED MUSCLE 600 00:30:52,640 --> 00:30:53,240 CONTRACTIONS. 601 00:30:53,240 --> 00:30:56,240 THE DISEASE CAN BE QUITE SEVERE 602 00:30:56,240 --> 00:30:57,840 JUST BY SAYING THERE'S FATIGUE 603 00:30:57,840 --> 00:31:01,400 DOESN'T MEAN TO MINIMIZE IT 604 00:31:01,400 --> 00:31:04,440 COULD BE LIFE THREATENING AND 605 00:31:04,440 --> 00:31:08,880 COULD BE QUITE SERIOUS 606 00:31:08,880 --> 00:31:09,240 INFLICTION. 607 00:31:09,240 --> 00:31:11,440 SO THE MYASTHENIA GRAVIS 608 00:31:11,440 --> 00:31:13,280 FOUNDATION IS THE LARGEST 609 00:31:13,280 --> 00:31:14,800 LEADING PATIENT ADVOCACY 610 00:31:14,800 --> 00:31:16,400 FOUNDATION SOLELY DEDICATED TO 611 00:31:16,400 --> 00:31:18,040 FINDING A CURE IN IMPROVED 612 00:31:18,040 --> 00:31:18,840 TREATMENT FOR MYASTHENIA GRAVIS. 613 00:31:18,840 --> 00:31:21,680 WHAT WE'VE BEEN WORKING ON IS 614 00:31:21,680 --> 00:31:24,560 TRYING TO FIND THE MOST 615 00:31:24,560 --> 00:31:26,160 PROMISING CRITICAL RESEARCH 616 00:31:26,160 --> 00:31:27,960 DISCOVERIES AND TO PROVIDE 617 00:31:27,960 --> 00:31:29,160 PATIENT-CENTERED PROGRAMS AND 618 00:31:29,160 --> 00:31:31,080 MATERIALS TO CONNECT AND ASSIST 619 00:31:31,080 --> 00:31:33,200 MEMBERS OF THE GLOBAL MG 620 00:31:33,200 --> 00:31:34,800 COMMUNITY. 621 00:31:34,800 --> 00:31:37,760 SO MY ROLE I HAVE TWO ROLES I 622 00:31:37,760 --> 00:31:39,160 WEAR TWO HATS. 623 00:31:39,160 --> 00:31:45,120 ONE WITH THE MGFA AND THE OTHER 624 00:31:45,120 --> 00:31:45,440 UNIVERSITY. 625 00:31:45,440 --> 00:31:46,080 I'M THE CHIEF SCIENTIFIC OFFICER 626 00:31:46,080 --> 00:31:48,640 AND PARTNERED WITH THE CHIEF 627 00:31:48,640 --> 00:31:49,720 MEDICAL OFFICER. 628 00:31:49,720 --> 00:31:51,280 THIS IS AN IMPORTANT 629 00:31:51,280 --> 00:31:51,920 DISTINCTION. 630 00:31:51,920 --> 00:31:53,800 I HAVE A Ph.D. AND BENCH 631 00:31:53,800 --> 00:31:58,440 SCIENTIST AND MY PARTNER WHO IS 632 00:31:58,440 --> 00:32:02,720 A CLINICIAN AT YALE IS A 633 00:32:02,720 --> 00:32:03,360 NEUROMUSCULAR SPECIALISTS WHO 634 00:32:03,360 --> 00:32:04,960 TREATS PATIENTS WITH MYASTHENIA 635 00:32:04,960 --> 00:32:05,840 GRAVIS. 636 00:32:05,840 --> 00:32:09,200 WE MAKE A COMPARABLE PAIR FOR 637 00:32:09,200 --> 00:32:10,360 DIRECTING THE SCIENCE AND 638 00:32:10,360 --> 00:32:12,720 MEDICINE OF THE MGFA. 639 00:32:12,720 --> 00:32:15,960 MY ROLE IN RECENT TIMES WITH THE 640 00:32:15,960 --> 00:32:18,440 MGFA HAS BEEN TO GUIDE RESEARCH 641 00:32:18,440 --> 00:32:19,280 AND FUNDING PROGRAMS. 642 00:32:19,280 --> 00:32:20,080 I'LL TALK ABOUT IN THE NEXT 643 00:32:20,080 --> 00:32:21,440 COUPLE SLIDES. 644 00:32:21,440 --> 00:32:25,200 THE MOST RECENTLY WE ORGANIZED 645 00:32:25,200 --> 00:32:26,440 OUR 14th INTERNATIONAL MEETING. 646 00:32:26,440 --> 00:32:28,720 THEY'RE HELD EVERY FIVE YEARS 647 00:32:28,720 --> 00:32:30,960 FOR THE MG COMMUNITY THAT BRING 648 00:32:30,960 --> 00:32:31,960 RESEARCHERS AND CLINICIANS 649 00:32:31,960 --> 00:32:34,040 AROUND THE WORLD TO DISCUSS THE 650 00:32:34,040 --> 00:32:35,560 LATEST FINDINGS. 651 00:32:35,560 --> 00:32:37,120 WE'VE GROWN TO THE POINT NOW 652 00:32:37,120 --> 00:32:40,480 WHERE THAT MEETING WILL BE EVERY 653 00:32:40,480 --> 00:32:42,120 THREE YEARS AND NEXT TIME IT 654 00:32:42,120 --> 00:32:44,480 WILL BE AT AN INTERNATIONAL 655 00:32:44,480 --> 00:32:44,920 LOCATION. 656 00:32:44,920 --> 00:32:46,760 IT'S BEEN HELD IN THE U.S. SINCE 657 00:32:46,760 --> 00:32:47,760 AND WE'RE MOVING TO EUROPE NEXT 658 00:32:47,760 --> 00:32:52,840 TIME IN TWO YEARS COMING. 659 00:32:52,840 --> 00:32:54,480 AT YALE I'M THE PRINCIPAL 660 00:32:54,480 --> 00:32:56,920 INVESTIGATOR AND MY LAP STUDIES 661 00:32:56,920 --> 00:32:59,080 THE MECHANISMS BY D CELLS THAT 662 00:32:59,080 --> 00:32:59,720 MEDIATE THE PATHOLOGY OF 663 00:32:59,720 --> 00:33:04,560 MYASTHENIA GRAVIS. 664 00:33:04,560 --> 00:33:06,120 SO SOME OF THE DIFFERENTIATORS 665 00:33:06,120 --> 00:33:09,200 OF THE MGFA I WANTED TO 666 00:33:09,200 --> 00:33:10,200 HIGHLIGHT WITH RESPECT TO THE 667 00:33:10,200 --> 00:33:12,800 RESEARCH WE'VE DONE IS WE PUT 668 00:33:12,800 --> 00:33:17,560 TOGETHER A FORMAL PROVING GRANT 669 00:33:17,560 --> 00:33:19,320 FUNDING PROGRAM THAT DRIVES THE 670 00:33:19,320 --> 00:33:20,600 FUNDING OPPORTUNITIES AT THE 671 00:33:20,600 --> 00:33:22,800 MOST PROMISING RESEARCH FOR 672 00:33:22,800 --> 00:33:23,080 TREATMENT. 673 00:33:23,080 --> 00:33:28,040 WE UTILIZED AN EXTERNAL BUT 674 00:33:28,040 --> 00:33:30,400 PERMANENT ADVISORY COUNCIL THAT 675 00:33:30,400 --> 00:33:32,160 HELPS MAKES INFORMED DECISIONS 676 00:33:32,160 --> 00:33:32,760 ABOUT THE INITIATIVES IN THE 677 00:33:32,760 --> 00:33:37,440 PROGRAMS. 678 00:33:37,440 --> 00:33:40,600 SO SOME OF THE IDENTIFIED BROAD 679 00:33:40,600 --> 00:33:42,360 RESEARCH AREAS WE'VE BEEN 680 00:33:42,360 --> 00:33:43,560 HIGHLIGHTING RECENTLY ARE THE 681 00:33:43,560 --> 00:33:44,000 FOLLOWING. 682 00:33:44,000 --> 00:33:49,000 VERY IMPORTANT FOR US TO 683 00:33:49,000 --> 00:33:51,840 IDENTIFY BIOMARKERS IN 684 00:33:51,840 --> 00:33:54,440 MYASTHENIA GRAVIS AND TO PREDICT 685 00:33:54,440 --> 00:33:57,240 CLINICAL OUTCOMES AND 686 00:33:57,240 --> 00:33:57,800 IMMUNOSUPPRESSIVE THERAPY 687 00:33:57,800 --> 00:34:01,240 RESPONSE TO UTILIZE IN CLINICAL 688 00:34:01,240 --> 00:34:01,440 TRIAL. 689 00:34:01,440 --> 00:34:03,920 THERE'S A NEW BIOLOGICS FOR 690 00:34:03,920 --> 00:34:05,200 MYASTHENIA GRAVIS AND SOME 691 00:34:05,200 --> 00:34:08,480 PATIENTS WILL RESPOND AND OTHER 692 00:34:08,480 --> 00:34:09,880 SUBPOPULATIONS DON'T RESPOND. 693 00:34:09,880 --> 00:34:13,200 WE DESPERATELY NEED BIOMARKERS 694 00:34:13,200 --> 00:34:15,560 TO UNDERSTAND WHICH WILL WORK IN 695 00:34:15,560 --> 00:34:17,200 WHICH SUBSET OF PATIENTS BEFORE 696 00:34:17,200 --> 00:34:18,160 THEY'RE APPLIED. 697 00:34:18,160 --> 00:34:19,480 WITH THAT THE SECOND AREA IS 698 00:34:19,480 --> 00:34:21,200 DISEASE MECHANISM. 699 00:34:21,200 --> 00:34:22,520 WE AIM TO UNDERSTAND THE BASIC 700 00:34:22,520 --> 00:34:26,360 DISEASE MECHANISMS THAT WILL 701 00:34:26,360 --> 00:34:27,240 INFORM VALUABLE BIOMARKERS IN 702 00:34:27,240 --> 00:34:27,840 WHICH THERAPEUTICS WILL WORK 703 00:34:27,840 --> 00:34:29,720 BEST. 704 00:34:29,720 --> 00:34:33,040 THEN WE PARTNER TO LOOK FOR 705 00:34:33,040 --> 00:34:33,840 TARGETED THERAPIES TO DEVELOP 706 00:34:33,840 --> 00:34:37,600 NEW THERAPEUTIC TARGETS. 707 00:34:37,600 --> 00:34:39,760 OFTEN TIMES IN MYASTHENIA GRAVIS 708 00:34:39,760 --> 00:34:41,200 THE TREATMENT IS BROAD 709 00:34:41,200 --> 00:34:43,200 IMMUNOSUPPRESSION WHICH IS 710 00:34:43,200 --> 00:34:45,080 EFFECTIVE BUT HAS SIDE EFFECTS 711 00:34:45,080 --> 00:34:47,160 ESPECIALLY IN THE TIME OF LIVING 712 00:34:47,160 --> 00:34:49,200 THROUGH A PANDEMIC YOU DON'T 713 00:34:49,200 --> 00:34:50,720 NEED OR WANT BROAD 714 00:34:50,720 --> 00:34:52,160 IMMUNOSUPPRESSION TO TREAT 715 00:34:52,160 --> 00:34:53,200 DISEASE WHEN THE CHANCE OF 716 00:34:53,200 --> 00:34:55,240 GETTING COVID WILL INCREASE. 717 00:34:55,240 --> 00:34:57,840 AND THEN WE HAVE 718 00:34:57,840 --> 00:34:58,400 PATIENT-ORIENTED RESEARCH 719 00:34:58,400 --> 00:35:00,040 FOCUSSED ON PATIENT OUTCOMES TO 720 00:35:00,040 --> 00:35:05,160 FULLY UNDERSTAND THE IMPACT OF 721 00:35:05,160 --> 00:35:12,240 THE DISEASE AND MYASTHENIA 722 00:35:12,240 --> 00:35:14,600 GRAVIS DOESN'T TYPICALLY IMPACT 723 00:35:14,600 --> 00:35:16,880 PEDIATRICS AND SO THERE'S A NEW 724 00:35:16,880 --> 00:35:17,640 LOOK AT TREATMENT AND RESPONSE 725 00:35:17,640 --> 00:35:24,800 DIFFERENTLY. 726 00:35:24,800 --> 00:35:26,600 AND THE RESEARCH AWARDS THAT 727 00:35:26,600 --> 00:35:28,200 HAVE COME TO LIGHT IN THE LAST 728 00:35:28,200 --> 00:35:30,240 FEW YEARS ARE IMPORTANT TO 729 00:35:30,240 --> 00:35:30,480 HIGHLIGHT. 730 00:35:30,480 --> 00:35:32,160 I SHOULD POINT OUT RIGHT BEFORE 731 00:35:32,160 --> 00:35:34,040 THE PANDEMIC STARTED THE MGFA 732 00:35:34,040 --> 00:35:37,880 WAS MANAGED BY AN EXTERNAL 733 00:35:37,880 --> 00:35:39,560 MANAGEMENT COMPANY AND SINCE 734 00:35:39,560 --> 00:35:42,080 THEN A NEW ENTIRELY FULL-TIME 735 00:35:42,080 --> 00:35:45,120 DEDICATED STAFF HAS COME ON 736 00:35:45,120 --> 00:35:45,320 BOARD. 737 00:35:45,320 --> 00:35:46,600 THERE'S BEEN SIGNIFICANT 738 00:35:46,600 --> 00:35:47,880 INCREASE IN FUND RAISING DUE TO 739 00:35:47,880 --> 00:35:49,440 THE EFFORTS OF THIS STAFF AND 740 00:35:49,440 --> 00:35:51,840 NEW MANAGEMENT TEAM THAT ARE 741 00:35:51,840 --> 00:35:54,560 EMPLOYEES OF THE MGFA. 742 00:35:54,560 --> 00:35:57,200 AND YEARS AGO THE ONLY AWARDS 743 00:35:57,200 --> 00:36:02,400 THE MGFA MADE AVAILABLE WERE 744 00:36:02,400 --> 00:36:04,520 PILOT AWARDS. 745 00:36:04,520 --> 00:36:07,040 WE STILL HAVE THOSE AND ADDED 746 00:36:07,040 --> 00:36:09,240 OTHERS AND ADDED THEM TO 747 00:36:09,240 --> 00:36:10,520 MULTIPLE AWARD SEASONS INSTEAD 748 00:36:10,520 --> 00:36:11,920 OF ONCE A YEAR. 749 00:36:11,920 --> 00:36:15,320 IN THE PILOT AWARDS WE'RE 750 00:36:15,320 --> 00:36:18,600 LOOKING AT STUDIES TO LOOK THEY 751 00:36:18,600 --> 00:36:20,120 LEAD TO NEW INVESTIGATORS. 752 00:36:20,120 --> 00:36:21,920 WE ADDED IN TRANSFORMATIVE 753 00:36:21,920 --> 00:36:23,160 RESEARCH AWARDS. 754 00:36:23,160 --> 00:36:32,800 THESE ARE CLOSER TO WHAT AN NIH 755 00:36:32,800 --> 00:36:35,200 R01 WOULD LOOK LIKE AND LOOK AT 756 00:36:35,200 --> 00:36:39,440 DIRECT IMPACT ON UNDERSTANDING 757 00:36:39,440 --> 00:36:40,680 MYASTHENIA AND WE HAVE 758 00:36:40,680 --> 00:36:44,840 SPECIALIZED PROJECTS TARGETED TO 759 00:36:44,840 --> 00:36:46,400 SPECIAL AWARDS. 760 00:36:46,400 --> 00:36:47,680 FOR EXAMPLE RECENTLY THERE'S A 761 00:36:47,680 --> 00:36:50,400 TYPE OF MYASTHENIA WHERE 762 00:36:50,400 --> 00:36:53,160 PATIENTS HAVE THE DISEASE BUT 763 00:36:53,160 --> 00:36:54,640 NOT AUTOANTIBODIES THAT ARE 764 00:36:54,640 --> 00:36:56,320 DETECTABLE AND UNDERSTANDING 765 00:36:56,320 --> 00:36:57,800 THAT DISEASE SUBTYPE IS VERY 766 00:36:57,800 --> 00:36:58,080 IMPORTANT. 767 00:36:58,080 --> 00:37:01,880 THESE PATIENTS ARE OFTEN NOT 768 00:37:01,880 --> 00:37:03,160 INVOLVED IN CLINICAL TRIALS 769 00:37:03,160 --> 00:37:04,600 BECAUSE THERE'S NO CLEAR 770 00:37:04,600 --> 00:37:09,200 MECHANISM OF THE DISEASE. 771 00:37:09,200 --> 00:37:13,240 WE FOCUS SPECIFICALLY TO 772 00:37:13,240 --> 00:37:15,560 UNDERSTAND SERO-NEGATIVE 773 00:37:15,560 --> 00:37:17,480 MYASTHENIA AND WE HAVE NEW 774 00:37:17,480 --> 00:37:19,040 INVESTIGATOR AWARDS FOR 775 00:37:19,040 --> 00:37:20,640 POST-DOCS OR CLINICIAN 776 00:37:20,640 --> 00:37:21,480 SCIENTISTS STARTING THEIR 777 00:37:21,480 --> 00:37:25,240 RESEARCH CAREERS AND THE IDEA IS 778 00:37:25,240 --> 00:37:30,040 TO ENGAGE AND SUPPORT A DIVERSE 779 00:37:30,040 --> 00:37:32,600 GROUP OF YOUNG INVESTIGATORS AND 780 00:37:32,600 --> 00:37:34,680 CLINICIANS NOT ONLY TO GET THEM 781 00:37:34,680 --> 00:37:36,040 INTERESTED IN UNDERSTANDING 782 00:37:36,040 --> 00:37:37,960 MYASTHENIA GRAVIS BUT TO CAPTURE 783 00:37:37,960 --> 00:37:41,560 THEM AND ALLOW THEM TO BUILD 784 00:37:41,560 --> 00:37:43,200 CAREERS IN THIS PARTICULAR FIELD 785 00:37:43,200 --> 00:37:45,240 SO THEY CAN MAINTAIN AND BUILD 786 00:37:45,240 --> 00:37:55,680 LONG RESEARCH PROGRAMS. 787 00:37:57,280 --> 00:37:59,760 HERE'S SOME EXAMPLES OF SOME 788 00:37:59,760 --> 00:38:01,120 AWARDS WE'VE LAUNCHED IN THE 789 00:38:01,120 --> 00:38:03,680 LAST COUPLE YEARS. 790 00:38:03,680 --> 00:38:08,160 THE FIRST IS WE SUPPORTED WORK 791 00:38:08,160 --> 00:38:10,920 FOR DIAGNOSTIC BIOMARKER AND THE 792 00:38:10,920 --> 00:38:12,680 SECOND WAS A THERAPEUTIC TARGET 793 00:38:12,680 --> 00:38:17,280 AND ANOTHER THAT LOOKS AT A 794 00:38:17,280 --> 00:38:27,960 SUBTYPE OF MY -- MYASTHENIA AND 795 00:38:29,640 --> 00:38:32,840 THE LAST ONE AWARDED TO DUKE AND 796 00:38:32,840 --> 00:38:37,200 YALE IS THE SERO-NEGATIVE 797 00:38:37,200 --> 00:38:39,240 PROJECT TO UNDERSTAND THE SUB 798 00:38:39,240 --> 00:38:41,080 TYPE AND IMMUNOPATHOLOGY TO 799 00:38:41,080 --> 00:38:42,200 UNDERSTAND HOW TO TREAT BETTER. 800 00:38:42,200 --> 00:38:45,800 I WANT TO CLOSE BY POINTING OUT 801 00:38:45,800 --> 00:38:48,200 THIS SUCCESS STORY WE'VE HAD AT 802 00:38:48,200 --> 00:38:51,000 YALE, THIS LETTER ON THE LEFT 803 00:38:51,000 --> 00:38:56,440 SIDE FROM 2013 WAS A LETTER WE 804 00:38:56,440 --> 00:38:58,880 RECEIVED GIVING US A PILOT AWARD 805 00:38:58,880 --> 00:39:01,960 ALMOST 10 YEARS AGO AND SIGNED 806 00:39:01,960 --> 00:39:06,920 BY A GENTLEMAN WHO WAS FROM THE 807 00:39:06,920 --> 00:39:09,200 PRIVATE MANAGEMENT COMPANY THAT 808 00:39:09,200 --> 00:39:10,440 OVERSAW THE DAY TO DAY 809 00:39:10,440 --> 00:39:12,720 OPERATIONS OF THE FOUNDATION AND 810 00:39:12,720 --> 00:39:16,760 NOW IN 2022 WE HAVE A FULL-TIME 811 00:39:16,760 --> 00:39:20,440 DEDICATED STAFF THAT RUNS THE 812 00:39:20,440 --> 00:39:21,800 ORGANIZATION AND HAS 813 00:39:21,800 --> 00:39:23,000 SIGNIFICANTLY INCREASED 814 00:39:23,000 --> 00:39:25,280 DEVELOPMENT AND SUPPORT. 815 00:39:25,280 --> 00:39:27,200 SINCE THIS INITIAL PILOT AWARD 816 00:39:27,200 --> 00:39:33,640 IN 2013, RICH AND I BUILT AN MG 817 00:39:33,640 --> 00:39:36,280 BIO REPOSITORY AND STARTED 818 00:39:36,280 --> 00:39:38,920 BUILDING DATA AND A DECADE LATER 819 00:39:38,920 --> 00:39:42,480 WE'VE BEEN AWARDED MULTIPLE MG 820 00:39:42,480 --> 00:39:46,840 SPECIFIC GRANTS FROM THE NIH AND 821 00:39:46,840 --> 00:39:49,080 R01 AND U54 PROJECT GRANT FROM 822 00:39:49,080 --> 00:39:49,560 THE NINDS. 823 00:39:49,560 --> 00:39:53,200 WE PUBLISHED IN OUR GROUP HERE 824 00:39:53,200 --> 00:39:57,640 AT YALE ALONE OVER 20MG SPECIFIC 825 00:39:57,640 --> 00:40:01,040 PUBLICATIONS STARTING IN 2013 826 00:40:01,040 --> 00:40:03,960 FROM ZERO AND FOCUSSED ON MG 827 00:40:03,960 --> 00:40:06,720 WITH PHARMA AND CLINICAL TRIALS 828 00:40:06,720 --> 00:40:07,440 AND IMPORTANTLY THIS PROGRAM 829 00:40:07,440 --> 00:40:09,320 THAT WE BUILT HERE AT YALE WITH 830 00:40:09,320 --> 00:40:11,480 THE SUPPORT OF THE MGFA HAS 831 00:40:11,480 --> 00:40:13,200 ALLOWED US TO TRAIN SCIENTISTS 832 00:40:13,200 --> 00:40:15,920 AND CLINICIANS AND MG SPECIFIC 833 00:40:15,920 --> 00:40:16,200 RESEARCH. 834 00:40:16,200 --> 00:40:17,280 I'LL STOP THERE AND I'LL LOOK 835 00:40:17,280 --> 00:40:17,960 FORWARD TO QUESTIONS IN THE NEXT 836 00:40:17,960 --> 00:40:24,280 SESSION. 837 00:40:24,280 --> 00:40:25,720 >> GREAT WORK. 838 00:40:25,720 --> 00:40:27,000 THANK YOU, O'CONNOR, THANK YOU 839 00:40:27,000 --> 00:40:29,400 FOR SHARING THAT WITH US. 840 00:40:29,400 --> 00:40:33,200 YOU HAVE GOT A LOT DONE AND 841 00:40:33,200 --> 00:40:33,640 QUICKLY. 842 00:40:33,640 --> 00:40:35,920 A LITTLE BIT ABOUT THE BRAIN 843 00:40:35,920 --> 00:40:36,640 DONOR PROGRAM. 844 00:40:36,640 --> 00:40:38,880 WE'RE A NONPROFIT DEVELOPED OVER 845 00:40:38,880 --> 00:40:41,840 SIX YEARS AGO TO SUPPORT THE 846 00:40:41,840 --> 00:40:43,720 BRAIN BANKS OF THE NIH. 847 00:40:43,720 --> 00:40:46,040 IT'S CALLED THE NEUROBIO BANK 848 00:40:46,040 --> 00:40:48,960 AND MAKES AVAILABLE HIGH 849 00:40:48,960 --> 00:40:51,600 QUALITY, DONATED HUMAN BRAIN 850 00:40:51,600 --> 00:40:53,160 TISSUE TO NEUROSCIENCE 851 00:40:53,160 --> 00:40:53,560 RESEARCHERS. 852 00:40:53,560 --> 00:40:56,760 WE'RE ALMOST SIX YEARS OLD AND 853 00:40:56,760 --> 00:40:59,600 NEARLY 6,000 GENEROUS SOULS ARE 854 00:40:59,600 --> 00:41:01,080 STARTED THE PROCESS TO BECOME 855 00:41:01,080 --> 00:41:03,360 BRAIN DONORS WHEN THEY DIE AND 856 00:41:03,360 --> 00:41:08,040 REPRESENT NEARLY 200 CATEGORIES 857 00:41:08,040 --> 00:41:12,960 OF BRAIN DIAGNOSES. 858 00:41:12,960 --> 00:41:14,240 IF YOU'RE LOOKING TO FIND 859 00:41:14,240 --> 00:41:15,880 ANSWERS FOR A DISEASE OR 860 00:41:15,880 --> 00:41:19,960 DISORDER AND WONDERED IF YOU 861 00:41:19,960 --> 00:41:25,000 NEED TO START A BRAIN BANK, SAVE 862 00:41:25,000 --> 00:41:30,280 IT FOR RESEARCH AND THE BRAIN 863 00:41:30,280 --> 00:41:33,800 BANK HAS AN INCREASING AMOUNT OF 864 00:41:33,800 --> 00:41:36,600 CONTROLS AND ALL REQUESTABLE 865 00:41:36,600 --> 00:41:36,800 ONLINE. 866 00:41:36,800 --> 00:41:39,640 P.I.s FROM ALL OVER THE WORLD 867 00:41:39,640 --> 00:41:41,000 GET A RESPONSE WITHIN A COUPLE 868 00:41:41,000 --> 00:41:42,440 BUSINESS DAYS AND ALL THEY PAY 869 00:41:42,440 --> 00:41:42,840 IS SHIPPING. 870 00:41:42,840 --> 00:41:45,800 I MAY BE BIASSED BUT IT IS AMONG 871 00:41:45,800 --> 00:41:50,280 THE MOST MEANINGFUL RESOURCES 872 00:41:50,280 --> 00:41:51,920 KNOWN TO NEUROSCIENCE AND THE 873 00:41:51,920 --> 00:41:53,520 SECOND POINT I WANT TO MAKE TO 874 00:41:53,520 --> 00:41:54,920 ADVOCACY GROUPS IS THE BRAIN 875 00:41:54,920 --> 00:41:56,640 DONOR PROJECT IS HAPPY TO 876 00:41:56,640 --> 00:41:57,760 PROVIDE CONTENT TO EDUCATE 877 00:41:57,760 --> 00:41:59,960 YOU'RE COMMUNITIES ABOUT THE 878 00:41:59,960 --> 00:42:01,040 CRITICAL NEED FOR BRAIN DONATION 879 00:42:01,040 --> 00:42:02,600 BY ALL KINDS OF PEOPLE. 880 00:42:02,600 --> 00:42:04,080 NOT ONLY FROM THOSE WHO HAVE 881 00:42:04,080 --> 00:42:06,600 BEEN DIAGNOSED BUT THEIR FRIENDS 882 00:42:06,600 --> 00:42:07,760 AND FAMILY WHO CAN SUPPORT 883 00:42:07,760 --> 00:42:09,720 SCIENCE BY DONATING THEIR 884 00:42:09,720 --> 00:42:12,880 UNAFFECTED CONTROL BRAINS. 885 00:42:12,880 --> 00:42:14,360 AS YOU KNOW THEY'RE NECESSARY IN 886 00:42:14,360 --> 00:42:16,120 EVERY STUDY. 887 00:42:16,120 --> 00:42:24,560 WE'LL SHARE NEWSLETTER ARTICLES 888 00:42:24,560 --> 00:42:26,160 SO WEBINARS AND WRITE E-MAIL 889 00:42:26,160 --> 00:42:28,840 BLASTS AND SITE COPY FOR YOUR 890 00:42:28,840 --> 00:42:32,120 RESOURCE SECTION. 891 00:42:32,120 --> 00:42:33,960 SAY THE WORD AND YOU CAN GET 892 00:42:33,960 --> 00:42:38,280 HOLD OF ME, TISH AT BRAIN DONOR 893 00:42:38,280 --> 00:42:39,080 PROJECT.org. 894 00:42:39,080 --> 00:42:44,160 THERE'S QUESTIONS IN THE CHAT. 895 00:42:44,160 --> 00:42:46,840 THE FIRST IS DR. IBANEZ, CAN YOU 896 00:42:46,840 --> 00:42:48,120 TALK ABOUT THE CHALLENGES YOU 897 00:42:48,120 --> 00:42:54,080 FACED WHEN YOU HAD TO PROVIDE 898 00:42:54,080 --> 00:42:57,320 ALL RESEARCH RELATED MATERIALS 899 00:42:57,320 --> 00:43:03,760 TO SPANISH SPEAKERS. 900 00:43:03,760 --> 00:43:05,240 >> THANK YOU FOR THE QUESTION. 901 00:43:05,240 --> 00:43:07,080 IT WAS A PROCESS. 902 00:43:07,080 --> 00:43:09,160 THE MOST IMPORTANT THING WAS 903 00:43:09,160 --> 00:43:11,200 TRYING TO LOCALIZE LOCAL SPOTS 904 00:43:11,200 --> 00:43:16,320 IN DIFFERENT COUNTRIES WITH 905 00:43:16,320 --> 00:43:19,440 RELATIVELY WELL PREPARED 906 00:43:19,440 --> 00:43:20,800 RESEARCH CENTERS AND PROVIDE ALL 907 00:43:20,800 --> 00:43:22,040 THE DATA FOR THE LOCAL TEAMS 908 00:43:22,040 --> 00:43:30,720 FROM GENETICS TO NEURO IMAGING 909 00:43:30,720 --> 00:43:39,280 AND DATA AND IN ADDITION TO THE 910 00:43:39,280 --> 00:43:43,720 CONSORTIA PUBLICATION. 911 00:43:43,720 --> 00:43:46,960 AND NOT ONLY PROVIDING MATERIALS 912 00:43:46,960 --> 00:43:48,600 BUT TO HELP. 913 00:43:48,600 --> 00:43:50,360 WE HAD TO PROVIDE SOMETIMES LIKE 914 00:43:50,360 --> 00:43:55,600 THE SOFTWARE FOR THE FAMILY AND 915 00:43:55,600 --> 00:43:58,880 WE ARE ABLE TO PROVIDE THAT. 916 00:43:58,880 --> 00:44:02,640 WE ARE WORKING WITH THE A.D. 917 00:44:02,640 --> 00:44:04,280 WORK BENCH TO PROVIDE 918 00:44:04,280 --> 00:44:05,080 COMPUTATIONAL SUPPORT FOR THE 919 00:44:05,080 --> 00:44:06,840 TEAM BECAUSE THEY DON'T HAVE 920 00:44:06,840 --> 00:44:09,320 ENOUGH TO DEVELOP THE ANALYSIS 921 00:44:09,320 --> 00:44:11,960 AND IN PARALLEL WE CREATE A KIND 922 00:44:11,960 --> 00:44:16,480 OF TRAINING PROCESS. 923 00:44:16,480 --> 00:44:21,640 WE TRAIN PEOPLE IN CLINICAL 924 00:44:21,640 --> 00:44:25,240 ASSESSMENT AND CREATE DIFFERENT 925 00:44:25,240 --> 00:44:27,560 TUTORIALS AND COURSES FOR 926 00:44:27,560 --> 00:44:30,040 CLINICAL ASSESSMENT AND THAT'S 927 00:44:30,040 --> 00:44:32,680 OUR CHECKLIST AND WE ARE TRYING 928 00:44:32,680 --> 00:44:36,320 TO EMPOWER THE LOCAL TEAMS AND 929 00:44:36,320 --> 00:44:37,600 CONNECTING WITH THE CONSORTIA 930 00:44:37,600 --> 00:44:39,000 AND GIVING THE OPPORTUNITY FOR 931 00:44:39,000 --> 00:44:42,000 THE DIFFERENT CENTERS TO MAKE 932 00:44:42,000 --> 00:44:43,880 THE SPECIFIC RESEARCH. 933 00:44:43,880 --> 00:44:46,200 IN ADDITION AND INCLUDING THE 934 00:44:46,200 --> 00:44:48,960 SPECIAL TASK FOR QUESTION AREA 935 00:44:48,960 --> 00:44:55,520 AND THEY CAN USE ALL THE DATA 936 00:44:55,520 --> 00:44:57,040 PROVIDED. 937 00:44:57,040 --> 00:44:58,680 WE ARE TRYING TO PROVIDE 938 00:44:58,680 --> 00:45:01,240 HOLISTIC SUPPORT FOR THE TEAMS. 939 00:45:01,240 --> 00:45:03,440 >> HOLISTIC IS RIGHT. 940 00:45:03,440 --> 00:45:03,760 THAT'S A LOT. 941 00:45:03,760 --> 00:45:07,200 AND YOU STARTED TO ANSWER SOME 942 00:45:07,200 --> 00:45:09,200 OF THE NEXT QUESTION WHICH WAS 943 00:45:09,200 --> 00:45:13,200 ALSO ASKED ABOUT ENTICING 944 00:45:13,200 --> 00:45:15,160 PROFESSIONALS TO ATTEND THE 945 00:45:15,160 --> 00:45:15,680 TRAININGS. 946 00:45:15,680 --> 00:45:17,200 DR. BECK, I SEE YOU OFFERED A 947 00:45:17,200 --> 00:45:17,720 RESPONSE. 948 00:45:17,720 --> 00:45:19,120 CAN YOU TALK ABOUT THAT A LITTLE 949 00:45:19,120 --> 00:45:19,280 BIT. 950 00:45:19,280 --> 00:45:22,560 >> ABSOLUTELY. 951 00:45:22,560 --> 00:45:25,200 SO TRYING TO BRING PEER 952 00:45:25,200 --> 00:45:25,840 PROFESSIONALS IN THE PROCESS WAS 953 00:45:25,840 --> 00:45:32,040 THREE NETWORKING AND STEWARDSHIP 954 00:45:32,040 --> 00:45:40,520 WITHIN THE U.S. AND WE ACADEMIC 955 00:45:40,520 --> 00:45:42,760 MEDICAL CENTERS AND WE ASKED 956 00:45:42,760 --> 00:45:49,200 INDIVIDUALS TO REACH OUT IT 957 00:45:49,200 --> 00:45:50,920 COMMUNITIES TO FIND PROMOTORES 958 00:45:50,920 --> 00:45:57,280 AND WE RECEIVED A GENEROUS GRANT 959 00:45:57,280 --> 00:46:01,600 AND PROVIDE STIPENDS. 960 00:46:01,600 --> 00:46:05,840 THERE'S AN ENGAGEMENT BODY AND 961 00:46:05,840 --> 00:46:08,040 WE RECOGNIZED THERE'S NOT ENOUGH 962 00:46:08,040 --> 00:46:10,520 PEOPLE WHO WHETHER THEY'RE 963 00:46:10,520 --> 00:46:15,520 CLINICIANS OR GENETIC COUNSELORS 964 00:46:15,520 --> 00:46:19,280 KNOW ENOUGH ABOUT PARKINSON'S 965 00:46:19,280 --> 00:46:20,480 GENETICS AND TRYING TO PROVIDE 966 00:46:20,480 --> 00:46:25,200 CME CREDITS TO LEARN MORE ABOUT 967 00:46:25,200 --> 00:46:26,040 PARKINSON'S AND HOW THE 968 00:46:26,040 --> 00:46:28,080 DISCUSSIONS SHOULD BE STRUCTURED 969 00:46:28,080 --> 00:46:31,120 IN RETURNING RESULTS TO PEOPLE 970 00:46:31,120 --> 00:46:31,880 WITH PD. 971 00:46:31,880 --> 00:46:36,480 >> YOU TALKED ABOUT AN 972 00:46:36,480 --> 00:46:39,080 ACCREDITATION BODY FOR 973 00:46:39,080 --> 00:46:40,000 PROMOTORES. 974 00:46:40,000 --> 00:46:45,760 >> THERE'S A CREDENTIALING BODY 975 00:46:45,760 --> 00:46:47,440 AND OUR FOUNDATION IS ABLE TO 976 00:46:47,440 --> 00:46:51,280 PROVIDE ACCREDITATION FOR CMEs 977 00:46:51,280 --> 00:46:54,560 AND CEUs AND LOOKING TO GET 978 00:46:54,560 --> 00:46:55,960 OURSELVES CERTIFIED TO DO THE 979 00:46:55,960 --> 00:46:58,280 SAME FOR COMMUNITY HEALTH 980 00:46:58,280 --> 00:46:59,920 WORKERS SO THE ADDITIONAL 981 00:46:59,920 --> 00:47:02,360 INCENTIVE WE OFFERED IT FOR FREE 982 00:47:02,360 --> 00:47:06,600 OF COURSE AND BECAUSE THE 983 00:47:06,600 --> 00:47:07,200 PROFESSIONALS NEED THESE 984 00:47:07,200 --> 00:47:11,280 CONTINUED EDUCATION CREDITS 985 00:47:11,280 --> 00:47:14,840 THERE'S A REAL INCENTIVE TO 986 00:47:14,840 --> 00:47:15,640 PARTICIPATE IN SOMETHING THAT'S 987 00:47:15,640 --> 00:47:17,680 FREE AND COMMUNITY HEALTH 988 00:47:17,680 --> 00:47:18,880 WORKERS WHERE THEY MAY HAVE TO 989 00:47:18,880 --> 00:47:21,560 DO IT OUT OF THEIR OWN POCKET 990 00:47:21,560 --> 00:47:25,760 AND MORE INCENTIVE TO LEARN 991 00:47:25,760 --> 00:47:27,360 ABOUT RESEARCH AND PARKINSON'S 992 00:47:27,360 --> 00:47:27,960 DISEASE. 993 00:47:27,960 --> 00:47:31,280 >> THAT'S A SUCCESS STORY IN 994 00:47:31,280 --> 00:47:35,240 ITSELF TO LEARN THE RESOURCES 995 00:47:35,240 --> 00:47:37,960 HELP ALL OF US AND ACCEPT 996 00:47:37,960 --> 00:47:39,000 INVITATIONS ON A VERY LOCAL 997 00:47:39,000 --> 00:47:41,280 LEVEL. 998 00:47:41,280 --> 00:47:43,200 THAT'S BRILLIANT. 999 00:47:43,200 --> 00:47:48,680 ANY OTHER QUESTIONS FROM THE 1000 00:47:48,680 --> 00:47:49,160 GROUP? 1001 00:47:49,160 --> 00:47:50,680 I'M SEEING A QUESTION ABOUT 1002 00:47:50,680 --> 00:47:51,480 BRAIN DONATION. 1003 00:47:51,480 --> 00:47:55,600 I'LL CIRCLE BACK. 1004 00:47:55,600 --> 00:47:57,440 WE DO SPINAL FLUID AND OTHER 1005 00:47:57,440 --> 00:48:00,320 THINGS AND WE'LL WORK WITH 1006 00:48:00,320 --> 00:48:01,000 DIFFERENT GROUPS WHO NEED 1007 00:48:01,000 --> 00:48:03,600 SPECIFIC TISSUES FROM TIME TO 1008 00:48:03,600 --> 00:48:03,840 TIME. 1009 00:48:03,840 --> 00:48:08,960 >> TISH, I WANT TO MAKE ANOTHER 1010 00:48:08,960 --> 00:48:13,040 VOTE FOR BRAIN DONATION IN THE 1011 00:48:13,040 --> 00:48:14,400 PARKS PARKINSON'S COMMUNITY IT'S 1012 00:48:14,400 --> 00:48:17,200 BEEN CRITICAL TO ADVANCE 1013 00:48:17,200 --> 00:48:18,520 RESEARCH FOR PEOPLE WHO MAKE 1014 00:48:18,520 --> 00:48:19,480 THAT GENEROUS DONATION OF TISSUE 1015 00:48:19,480 --> 00:48:20,800 AT THEN OF LIFE. 1016 00:48:20,800 --> 00:48:24,000 IT'S HOW WE'VE BEEN ABLE TO MAKE 1017 00:48:24,000 --> 00:48:34,320 KEY ADVANCEMENTS. 1018 00:48:37,280 --> 00:48:38,680 PARKINSON'S DISEASE HAPPENS IN 1019 00:48:38,680 --> 00:48:42,400 PEOPLE AND NOT ANIMALS. 1020 00:48:42,400 --> 00:48:48,880 >> WE HAVE ALMOST 2,000 PEOPLE 1021 00:48:48,880 --> 00:48:52,240 WHO REPORTED PARKINSON'S 1022 00:48:52,240 --> 00:48:54,080 DIAGNOSIS WHO PLAN TO DONATE 1023 00:48:54,080 --> 00:48:55,240 THEIR BRAINS. 1024 00:48:55,240 --> 00:48:56,680 IT SEEMS THERE'S BEEN A LOT OF 1025 00:48:56,680 --> 00:48:58,640 QUESTION AND ENGAGING UNDER 1026 00:48:58,640 --> 00:48:59,520 SERVED POPULATIONS WHICH IS 1027 00:48:59,520 --> 00:49:00,840 SOMETHING WE'RE ALL WORKING 1028 00:49:00,840 --> 00:49:02,440 HARDER TO DO RIGHT NOW. 1029 00:49:02,440 --> 00:49:03,760 VERY VALUABLE ESPECIALLY TO ME 1030 00:49:03,760 --> 00:49:04,920 TO UNDERSTAND THE RESOURCES OUT 1031 00:49:04,920 --> 00:49:09,880 THERE FOR THAT ENGAGEMENT. 1032 00:49:09,880 --> 00:49:13,000 DR. IBANEZ, THAT'S THE MOST 1033 00:49:13,000 --> 00:49:14,760 COMPLICATED WORK WITH PEOPLE IN 1034 00:49:14,760 --> 00:49:17,800 DIFFERENT COUNTRIES AND CULTURES 1035 00:49:17,800 --> 00:49:18,400 AND DIFFERENT SOCIAL 1036 00:49:18,400 --> 00:49:19,920 DETERMINATES OF HEALTH. 1037 00:49:19,920 --> 00:49:22,760 I APPLAUD YOUR ORGANIZATION FOR 1038 00:49:22,760 --> 00:49:24,760 WHAT YOU'RE ABLE TO GET DONE AND 1039 00:49:24,760 --> 00:49:26,040 WILL HELP MOVE SCIENCE FORWARD. 1040 00:49:26,040 --> 00:49:28,440 DR. BECK, I LEARNED SO MUCH 1041 00:49:28,440 --> 00:49:30,640 ABOUT PARKINSON'S AND HAD NO 1042 00:49:30,640 --> 00:49:33,080 IDEA THE GENETIC COMPONENT WAS A 1043 00:49:33,080 --> 00:49:35,000 SMALL MINORITY OF CASES BUT SO 1044 00:49:35,000 --> 00:49:36,480 CRITICAL TO UNDERSTAND THAT A 1045 00:49:36,480 --> 00:49:36,960 LITTLE BIT BETTER AND 1046 00:49:36,960 --> 00:49:41,120 DR. O'CONNOR, WE HAVE A BOARD 1047 00:49:41,120 --> 00:49:43,840 MEMBER WITH MG AND I UNDERSTAND 1048 00:49:43,840 --> 00:49:45,880 MORE ABOUT WHAT HE STRUGGLES 1049 00:49:45,880 --> 00:49:50,560 WITH FROM TIME TO TIME. 1050 00:49:50,560 --> 00:49:52,360 SOMETIMES AT THE LAST MINUTE HE 1051 00:49:52,360 --> 00:49:54,320 CAN'T ATTEND A MEETING BECAUSE 1052 00:49:54,320 --> 00:49:58,760 HIS VERBAL IS VERY IMPACTED BY 1053 00:49:58,760 --> 00:50:00,440 THIS CONDITION. 1054 00:50:00,440 --> 00:50:03,480 YOU EDUCATED ME. 1055 00:50:03,480 --> 00:50:04,880 AND IF ANYONE HAS QUESTIONS WE 1056 00:50:04,880 --> 00:50:06,200 HAVE A COUPLE MORE MINUTES TO 1057 00:50:06,200 --> 00:50:06,680 MOVE FORWARD. 1058 00:50:06,680 --> 00:50:08,960 DO ANY OF OUR PANELISTS FEEL 1059 00:50:08,960 --> 00:50:10,240 LIKE THERE'S SOMETHING THEY 1060 00:50:10,240 --> 00:50:12,000 WANTED TO SAY THEY DIDN'T GET A 1061 00:50:12,000 --> 00:50:12,320 CHANCE TO 1062 00:50:12,320 --> 00:50:17,520 BECAUSE WE CAN CIRCLE 1063 00:50:17,520 --> 00:50:19,520 BACK IN THE ABSENCE OF ANY 1064 00:50:19,520 --> 00:50:20,240 FURTHER QUESTIONS? 1065 00:50:20,240 --> 00:50:23,840 >> I KNOW THERE'S A QUESTION 1066 00:50:23,840 --> 00:50:25,080 GERALDINE ASKED ABOUT SPANISH 1067 00:50:25,080 --> 00:50:25,360 MATERIALS. 1068 00:50:25,360 --> 00:50:27,400 I ALSO WANT TO MENTION FOR OUR 1069 00:50:27,400 --> 00:50:29,200 STUDY AS PARTS OF OUR OUTREACH, 1070 00:50:29,200 --> 00:50:30,800 FOR PEOPLE WHO ARE INTERESTED IN 1071 00:50:30,800 --> 00:50:33,480 TRYING TO ENGAGE SPANISH 1072 00:50:33,480 --> 00:50:38,680 SPEAKERS IN THE U.S. THROUGH THE 1073 00:50:38,680 --> 00:50:39,600 STUDIES, IT'S NOT ALWAYS A 1074 00:50:39,600 --> 00:50:40,520 STRAIGHTFORWARD PROCESS. 1075 00:50:40,520 --> 00:50:42,080 TRANSLATION IS JUST PART OF IT 1076 00:50:42,080 --> 00:50:44,080 BUT IDENTIFYING INDIVIDUALS WHO 1077 00:50:44,080 --> 00:50:46,320 CAN THEN REACH OUT TO THE 1078 00:50:46,320 --> 00:50:49,200 COMMUNITY IS PART OF IT AND THE 1079 00:50:49,200 --> 00:50:52,640 OTHER SIDE AND I THINK AGUSTIN 1080 00:50:52,640 --> 00:50:56,480 WAS TALKING ABOUT THIS WITH HIS 1081 00:50:56,480 --> 00:50:59,120 OUTREACH WE SEE ISSUES AROUND 1082 00:50:59,120 --> 00:50:59,920 SOCIO ECONOMIC STATUS AND TRYING 1083 00:50:59,920 --> 00:51:01,960 TO GAIN ACCESS TO SOME 1084 00:51:01,960 --> 00:51:02,200 RESOURCES. 1085 00:51:02,200 --> 00:51:04,800 WE LAUNCHED OUR STUDY IN THE 1086 00:51:04,800 --> 00:51:07,440 WINTER OF 2019 AND THEN COVID 1087 00:51:07,440 --> 00:51:10,120 CAME IN MARCH AND WE HAD TO 1088 00:51:10,120 --> 00:51:12,360 QUICKLY PIVOT TO A TELEMEDICINE 1089 00:51:12,360 --> 00:51:15,880 APPROACH AND WERE ABLE TO WHICH 1090 00:51:15,880 --> 00:51:19,000 IS GREAT AND YOU CAN DO GENETIC 1091 00:51:19,000 --> 00:51:22,680 COUNSELLING AND A BUCKLE SWAB AT 1092 00:51:22,680 --> 00:51:25,200 HOME TO COLLECT DNA SAMPLES AND 1093 00:51:25,200 --> 00:51:28,600 MANY MEMBERS OF OUR 1094 00:51:28,600 --> 00:51:29,160 SPANISH-SPEAKING COMMUNITY 1095 00:51:29,160 --> 00:51:30,440 DIDN'T HAVE ACCESS TO RESOURCES 1096 00:51:30,440 --> 00:51:32,920 AND HAD LOTS OF QUESTIONS. 1097 00:51:32,920 --> 00:51:36,760 IT'S DIFFERENT THAN WHEN WE'RE 1098 00:51:36,760 --> 00:51:39,760 JUST DEALING WITH WHITE COLLARED 1099 00:51:39,760 --> 00:51:42,040 EDUCATED MEN THE DOMINANT 1100 00:51:42,040 --> 00:51:43,520 PARTICIPANTS IN RESEARCH. 1101 00:51:43,520 --> 00:51:49,600 IT REQUIRES MORE EFFORT AND 1102 00:51:49,600 --> 00:51:50,480 PROMOTORESES ARE A GREAT PART OF 1103 00:51:50,480 --> 00:51:52,960 THAT AND I HAVE MEMBERS ON MY 1104 00:51:52,960 --> 00:52:03,520 TEAM WHO ARE SPANISH SPEAKERS, 1105 00:52:05,280 --> 00:52:06,120 DOMINICAN REPUBLIC AND PUERTO 1106 00:52:06,120 --> 00:52:14,440 RICO AND IN GENETICS IS ABOUT A 1107 00:52:14,440 --> 00:52:15,560 FAMILY AND MORE PEOPLE MAY BE 1108 00:52:15,560 --> 00:52:16,960 INVOLVED IN THE CONSENTING 1109 00:52:16,960 --> 00:52:18,360 PROCESS AND THE DISCUSSION ABOUT 1110 00:52:18,360 --> 00:52:20,680 THE RETURN ON RESULTS. 1111 00:52:20,680 --> 00:52:23,280 BEING ABLE TO BE FLEXIBLE AROUND 1112 00:52:23,280 --> 00:52:25,240 THAT IS IMPORTANT TO SEE 1113 00:52:25,240 --> 00:52:27,480 SUCCESSFUL ENGAGEMENT IN 1114 00:52:27,480 --> 00:52:31,200 COMMUNITIES OTHER THAN THE EURO 1115 00:52:31,200 --> 00:52:32,440 ETHNIC COMMUNITIES WHICH 1116 00:52:32,440 --> 00:52:34,280 DOMINATE OUR STUDIES. 1117 00:52:34,280 --> 00:52:37,560 IT'S NOT JUST THE SOCIAL JUSTICE 1118 00:52:37,560 --> 00:52:41,240 ISSUE THERE'S SO MUCH TO BE 1119 00:52:41,240 --> 00:52:42,160 LEARNED SCIENTIFICALLY FROM 1120 00:52:42,160 --> 00:52:43,920 PEOPLE FROM DIVERSE BACKGROUNDS 1121 00:52:43,920 --> 00:52:46,840 AND IN PRECISION MEDICINE IT'S 1122 00:52:46,840 --> 00:52:47,840 IMPORTANT TO HAVE PEOPLE 1123 00:52:47,840 --> 00:52:49,160 REPRESENTED SPECIFICALLY AROUND 1124 00:52:49,160 --> 00:52:52,560 GENETICS TO BE INCLUDED AS PART 1125 00:52:52,560 --> 00:52:56,280 OF THIS GENETIC, PRECISION 1126 00:52:56,280 --> 00:52:58,360 MEDICINE REVOLUTION. 1127 00:52:58,360 --> 00:53:02,400 PEOPLE OF COLOMBIAN DESCENT HAVE 1128 00:53:02,400 --> 00:53:05,200 A UNIQUE MUTATION THAT CAN LEAD 1129 00:53:05,200 --> 00:53:07,560 TO PARKINSON'S DISEASE AND YOU 1130 00:53:07,560 --> 00:53:11,160 CAN SEE A COMPANY MAKING A 1131 00:53:11,160 --> 00:53:12,520 THERAPEUTIC AND LIST WHAT GENES 1132 00:53:12,520 --> 00:53:14,600 AND PERHAPS MUTATIONS AND IF 1133 00:53:14,600 --> 00:53:15,880 SOMEONE'S LEFT OFF THEY MAY NOT 1134 00:53:15,880 --> 00:53:18,240 GET ACCESS TO THE TREATMENT OR 1135 00:53:18,240 --> 00:53:18,720 INSURANCE COVERAGE. 1136 00:53:18,720 --> 00:53:23,280 THESE ARE THE THINGS THAT ARE 1137 00:53:23,280 --> 00:53:29,200 ADD-ONs IT'S IMPORTANT TO ENSURE 1138 00:53:29,200 --> 00:53:33,360 EVERYONE IS PART OF THIS. 1139 00:53:33,360 --> 00:53:38,080 THERE'S MANY A STONE TO BE 1140 00:53:38,080 --> 00:53:39,760 UNTURNED FOR HELPING THE DISEASE 1141 00:53:39,760 --> 00:53:41,760 AND COMMUNITIES AT LARGE. 1142 00:53:41,760 --> 00:53:43,080 >> EXCELLENT POINTS. 1143 00:53:43,080 --> 00:53:44,280 THANK YOU FOR SHARING THEM. 1144 00:53:44,280 --> 00:53:45,200 ONE MORE QUESTION TO 1145 00:53:45,200 --> 00:53:47,200 DR. O'CONNOR. 1146 00:53:47,200 --> 00:53:48,680 DR. KOROSHETZ IS WONDERING ABOUT 1147 00:53:48,680 --> 00:53:51,520 THE FOUNDATION'S THOUGHTS ON THE 1148 00:53:51,520 --> 00:53:55,360 NEW MEDICATION FOR ACHRAB 1149 00:53:55,360 --> 00:53:56,440 POSITIVE PATIENTS. 1150 00:53:56,440 --> 00:53:58,920 HE'S WONDERING HOW THAT BECAME A 1151 00:53:58,920 --> 00:54:01,240 REALITY AND DID THE FOUNDATION 1152 00:54:01,240 --> 00:54:02,840 PLAY A ROLE IN THAT? 1153 00:54:02,840 --> 00:54:04,560 >> WHICH PARTICULAR MEDICATION 1154 00:54:04,560 --> 00:54:07,600 ARE YOU SPEAKING ABOUT WALTER? 1155 00:54:07,600 --> 00:54:16,240 >> I THINK THE INHIBITOR. 1156 00:54:16,240 --> 00:54:18,120 >> OH, YEAH, SURE. 1157 00:54:18,120 --> 00:54:19,880 MY LAB DOES SOME WORK ON THAT. 1158 00:54:19,880 --> 00:54:21,720 I WOULDN'T SAY THE FOUNDATION 1159 00:54:21,720 --> 00:54:24,120 WAS DIRECTLY INVOLVED IN THAT 1160 00:54:24,120 --> 00:54:25,040 DEVELOPMENT AT THIS POINT. 1161 00:54:25,040 --> 00:54:27,280 I THINK THE FOUNDATION MADE A 1162 00:54:27,280 --> 00:54:30,040 TURNING POINT IN THAT WE DO HAVE 1163 00:54:30,040 --> 00:54:31,480 MORE ESTABLISHED COLLABORATIONS 1164 00:54:31,480 --> 00:54:33,680 WITH CLINICAL TRIALS THAT ARE 1165 00:54:33,680 --> 00:54:35,280 ONGOING AND SUPPORTED BY 1166 00:54:35,280 --> 00:54:38,520 PHARMACEUTICAL COMPANIES. 1167 00:54:38,520 --> 00:54:40,600 THE COMPLIMENT INHIBITOR YOU'RE 1168 00:54:40,600 --> 00:54:43,760 SPEAKING ABOUT IS ONE OF THE 1169 00:54:43,760 --> 00:54:46,280 EXAMPLES OF THE NEW BIOLOGICS 1170 00:54:46,280 --> 00:54:47,960 THAT HAVE BECOME AVAILABLE THAT 1171 00:54:47,960 --> 00:54:49,880 HAVE VERY SURPRISING RESULTS. 1172 00:54:49,880 --> 00:54:52,840 WHAT I MEAN BY THAT IS IF THE 1173 00:54:52,840 --> 00:55:03,400 PATIENTS THAT ARE TAKING IT HAVE 1174 00:55:05,360 --> 00:55:06,680 ANTIBODIES AND THERE'S A SUB 1175 00:55:06,680 --> 00:55:08,760 POPULATION IN PATIENTS THAT 1176 00:55:08,760 --> 00:55:11,320 DON'T RESPONSE OR RESPOND LATE 1177 00:55:11,320 --> 00:55:12,480 THAT PARTICULAR THERAPEUTIC AND 1178 00:55:12,480 --> 00:55:16,040 THE FOUNDATION IS SUPPORTING 1179 00:55:16,040 --> 00:55:17,920 RESEARCH TO FURTHER INVESTIGATE 1180 00:55:17,920 --> 00:55:21,560 WHY THERE ARE HETEROGENEITY OF 1181 00:55:21,560 --> 00:55:22,840 PATIENTS THAT RESPOND TO THIS 1182 00:55:22,840 --> 00:55:33,400 DRUG IN A WAY THAT'S UNEXPECTED. 1183 00:55:34,080 --> 00:55:36,520 I GUESS IT'S AN EXAMPLE OF WHY 1184 00:55:36,520 --> 00:55:39,120 IT'S IMPORTANT TO PARTNER NOT 1185 00:55:39,120 --> 00:55:40,760 ONLY WITH ACADEMIC LABORATORIES 1186 00:55:40,760 --> 00:55:42,200 THAT CAN DO THIS KIND OF 1187 00:55:42,200 --> 00:55:44,960 RESEARCH BUT THERE NEEDS TO BE 1188 00:55:44,960 --> 00:55:45,960 PARTNERSHIP WITH PHARMA AS WELL 1189 00:55:45,960 --> 00:55:48,240 BECAUSE THEY'RE RUNNING THE 1190 00:55:48,240 --> 00:55:49,840 TRIAL AND HAVE THE PATIENT 1191 00:55:49,840 --> 00:55:53,040 SAMPLES FROM THOSE THAT RESPOND 1192 00:55:53,040 --> 00:55:54,160 AND THOSE THAT DON'T RESPOND. 1193 00:55:54,160 --> 00:55:56,880 IN ONE OF THE EXAMPLES I HAVE, 1194 00:55:56,880 --> 00:56:00,520 THE MGFA IS SUPPORTING RESEARCH 1195 00:56:00,520 --> 00:56:02,000 TO EXAMINE SPECIFICALLY THOSE 1196 00:56:02,000 --> 00:56:04,280 SAMPLES THAT HAVE COME FROM A 1197 00:56:04,280 --> 00:56:05,800 CLINICAL TRIAL OF A COMPLIMENT 1198 00:56:05,800 --> 00:56:07,080 INHIBITER LOOKING AT PATIENTS 1199 00:56:07,080 --> 00:56:08,640 THAT RESPOND AND PATIENTS THAT 1200 00:56:08,640 --> 00:56:13,680 DON'T TO FIND OUT WHY SO WE CAN 1201 00:56:13,680 --> 00:56:14,840 AVOID THIS VERY EXPENSIVE DRUG 1202 00:56:14,840 --> 00:56:17,880 THAT TAKES A LONG TIME TO TAKE 1203 00:56:17,880 --> 00:56:19,720 BEFORE IT'S GIVEN TO SOMEBODY 1204 00:56:19,720 --> 00:56:21,000 BEFORE KNOWING WHETHER IT'S 1205 00:56:21,000 --> 00:56:28,760 GOING TO WORK OR NOT. 1206 00:56:28,760 --> 00:56:33,320 >> I WAS GOING TO ASK -- SO 1207 00:56:33,320 --> 00:56:36,520 NINDS OFFERS GLOBAL HEALTH AND 1208 00:56:36,520 --> 00:56:41,960 RICHARD BENSON RUNS THAT OFFICE. 1209 00:56:41,960 --> 00:56:46,480 WE HAVE A STRATEGY OF WORKING 1210 00:56:46,480 --> 00:56:48,280 THROUGH THE FOGARTY INSTITUTE 1211 00:56:48,280 --> 00:56:51,800 BECAUSE THEY HAVE CONTACTS ALL 1212 00:56:51,800 --> 00:56:56,080 OVER AND THE BRAIN DISORDER 1213 00:56:56,080 --> 00:56:57,200 DEVELOPING WORLD WE FUND. 1214 00:56:57,200 --> 00:56:59,240 IT'S RUN THROUGH THE FOGARTY AND 1215 00:56:59,240 --> 00:57:06,240 WE RUN THE PROJECT THAT ARE 1216 00:57:06,240 --> 00:57:07,000 NEU 1217 00:57:07,000 --> 00:57:10,000 NEURO BASED AND WE HAVE SOME 1218 00:57:10,000 --> 00:57:11,320 LIKE TRAUMATIC BRAIN INJURY AND 1219 00:57:11,320 --> 00:57:15,520 IS THE FOGARTY INSTITUTE WELL 1220 00:57:15,520 --> 00:57:17,320 KNOWN WITH YOUR GROUND? 1221 00:57:17,320 --> 00:57:20,760 DO YOU WORK WITH THEM? 1222 00:57:20,760 --> 00:57:21,080 >> QUESTION. 1223 00:57:21,080 --> 00:57:21,280 >> YES. 1224 00:57:21,280 --> 00:57:31,480 THANK YOU. 1225 00:57:41,800 --> 00:57:47,320 WE WOULD LIKE TO CREATE A 1226 00:57:47,320 --> 00:57:48,040 REGISTRY. 1227 00:57:48,040 --> 00:57:54,640 TRAINING PEOPLE AND CREATING 1228 00:57:54,640 --> 00:57:57,200 QUALITY CHECK TRAININGS. 1229 00:57:57,200 --> 00:57:58,720 WE HAVE BEEN WORKING A LOT 1230 00:57:58,720 --> 00:58:01,200 TOWARDS THE INITIATIVE. 1231 00:58:01,200 --> 00:58:05,560 I THINK WE CAN TRANSLATE THIS 1232 00:58:05,560 --> 00:58:07,920 INITIATIVE TO OTHER FIELDS AND 1233 00:58:07,920 --> 00:58:09,200 DISORDERS. 1234 00:58:09,200 --> 00:58:10,240 I'M LOOKING FORWARD TO LEARN 1235 00:58:10,240 --> 00:58:11,760 MORE ABOUT THIS AND HAPPY TO 1236 00:58:11,760 --> 00:58:13,200 EXPLORE ANY OPPORTUNITY FOR 1237 00:58:13,200 --> 00:58:21,040 THAT. 1238 00:58:21,040 --> 00:58:22,240 >> THE LINK WAS JUST POSTED IN 1239 00:58:22,240 --> 00:58:22,680 THE CHAT. 1240 00:58:22,680 --> 00:58:24,280 I THINK WE'RE OUT OF TIME. 1241 00:58:24,280 --> 00:58:27,440 IT'S BEEN FASCINATING FOR ME AND 1242 00:58:27,440 --> 00:58:29,240 I KNOW IT HAS BEEN FOR OTHER 1243 00:58:29,240 --> 00:58:31,080 PEOPLE AND I WANT TO THANK THE 1244 00:58:31,080 --> 00:58:32,080 PANELISTS FOR THE BRILLIANT WORK 1245 00:58:32,080 --> 00:58:33,720 YOU'RE DOING AND TAKING THE TIME 1246 00:58:33,720 --> 00:58:35,200 TO SHARE IT. 1247 00:58:35,200 --> 00:58:36,360 THANK YOU, MUCH. 1248 00:58:36,360 --> 00:58:37,320 >> THANK YOU SO MUCH. 1249 00:58:37,320 --> 00:58:41,080 >> BYE-BYE. 1250 00:58:41,080 --> 00:58:41,760 >> GREAT DISCUSSION. 1251 00:58:41,760 --> 00:58:44,880 THANK YOU, TISH. 1252 00:58:44,880 --> 00:58:47,320 AND NOW WE'RE GOING TO MOVE INTO 1253 00:58:47,320 --> 00:58:52,680 THE SECOND TOPIC FOR THE 1254 00:58:52,680 --> 00:58:54,840 MORNING, WHICH IS ABOUT HOW TO 1255 00:58:54,840 --> 00:58:56,800 WORK TOGETHER TO ACHIEVE EQUITY 1256 00:58:56,800 --> 00:58:59,360 AND INCLUSIVITY IN THE RESEARCH 1257 00:58:59,360 --> 00:59:06,880 AND ALSO IN THE INVOLVEMENT OF 1258 00:59:06,880 --> 00:59:11,920 PATIENTS IN DISEASE GROUPS. 1259 00:59:11,920 --> 00:59:13,480 CERTAINLY AT NIH WE'VE BEEN 1260 00:59:13,480 --> 00:59:14,960 STRUGGLING WITH THIS PROBLEM FOR 1261 00:59:14,960 --> 00:59:16,040 MANY YEARS. 1262 00:59:16,040 --> 00:59:19,560 I THINK WE MADE SOME HEADWAY BUT 1263 00:59:19,560 --> 00:59:28,000 SEEMS TO BE AN UP HILL BATTLE. 1264 00:59:28,000 --> 00:59:32,800 WE HAVE LEARNED WHEN IT COMES TO 1265 00:59:32,800 --> 00:59:38,760 RESEARCH THERE'S NOT INNATE 1266 00:59:38,760 --> 00:59:43,680 TRUST IN AND IT TAKES A LONG 1267 00:59:43,680 --> 00:59:50,080 TIME TO BUILD THAT UP. 1268 00:59:50,080 --> 00:59:51,520 AND THE SITUATION OF TRYING TO 1269 00:59:51,520 --> 00:59:52,600 HELICOPTER IN THE RESEARCH GROUP 1270 00:59:52,600 --> 01:00:03,160 TO TRY TO GET SOMETHING DONE AND 1271 01:00:05,480 --> 01:00:11,360 OUT IS NOT FAIR FOR THE 1272 01:00:11,360 --> 01:00:13,120 COMMUNITY AND WE'RE TRYING TO 1273 01:00:13,120 --> 01:00:14,800 LOOK AT COMMUNITIES TO DO 1274 01:00:14,800 --> 01:00:15,080 RESEARCH. 1275 01:00:15,080 --> 01:00:18,040 I'M INTERESTED TO HEAR FROM THE 1276 01:00:18,040 --> 01:00:21,200 DISEASE ORGANIZATIONS HOW TRUST 1277 01:00:21,200 --> 01:00:25,200 BUILDING HAS WORKED IN YOUR 1278 01:00:25,200 --> 01:00:27,240 AREAS AND MAYBE LESSONS LEARNED 1279 01:00:27,240 --> 01:00:31,440 FROM NIH TO FOLLOW AS WELL. 1280 01:00:31,440 --> 01:00:35,880 SO WE'RE HAPPY TO HAVE JANET 1281 01:00:35,880 --> 01:00:38,680 FROM THE DYSTONIA MEDICAL 1282 01:00:38,680 --> 01:00:39,600 RESEARCH FOUNDATION LEADING THE 1283 01:00:39,600 --> 01:00:42,520 GROUP AND LOOKING FORWARD TO 1284 01:00:42,520 --> 01:00:43,880 WHAT PEOPLE HAVE TO SAY FROM 1285 01:00:43,880 --> 01:00:44,480 THEIR EXPERIENCES. 1286 01:00:44,480 --> 01:00:45,840 LET ME TURN IT OVER TO YOU, 1287 01:00:45,840 --> 01:00:46,040 JANET. 1288 01:00:46,040 --> 01:00:51,720 IS THAT OKAY? 1289 01:00:51,720 --> 01:00:56,080 >> GREAT, THANK YOU, WALTER. 1290 01:00:56,080 --> 01:00:56,760 I APPRECIATE IT. 1291 01:00:56,760 --> 01:00:58,240 I WANT TO THANK YOU FOR YOUR 1292 01:00:58,240 --> 01:01:00,320 ONGOING COMMITMENT TO THE 1293 01:01:00,320 --> 01:01:02,040 NONPROFIT FORUM TO BRING US ALL 1294 01:01:02,040 --> 01:01:05,480 TOGETHER TO LEARN FROM ONE 1295 01:01:05,480 --> 01:01:06,720 ANOTHER. 1296 01:01:06,720 --> 01:01:09,520 AND MANY THANKS TO THE TEAM AT 1297 01:01:09,520 --> 01:01:15,880 NINDS AND SAMANTHA AND ANDREA 1298 01:01:15,880 --> 01:01:19,320 WHO HAVE BEEN WONDERFUL IN THEIR 1299 01:01:19,320 --> 01:01:21,120 EFFORTS AND THANK YOU TO 1300 01:01:21,120 --> 01:01:25,000 HEATHER, CAMERON AND THE TEAM AT 1301 01:01:25,000 --> 01:01:25,520 INFINITY CONFERENCES. 1302 01:01:25,520 --> 01:01:27,600 WE HAVE DONE THESE MEETINGS AND 1303 01:01:27,600 --> 01:01:28,720 LOTS OF MOVING PARTS. 1304 01:01:28,720 --> 01:01:29,520 WELL DONE, EVERYBODY. 1305 01:01:29,520 --> 01:01:33,200 THANK YOU FOR THE OPPORTUNITY. 1306 01:01:33,200 --> 01:01:35,200 THE SESSION IS THE ENTIRE 1307 01:01:35,200 --> 01:01:38,160 COMMUNITY HOW TO WORK TO ACHIEVE 1308 01:01:38,160 --> 01:01:40,160 EQUITY AND INCLUSIVITY. 1309 01:01:40,160 --> 01:01:42,080 I THINK IT'S NEAR AND DEAR TO 1310 01:01:42,080 --> 01:01:43,760 ALL OUR HEARTS. 1311 01:01:43,760 --> 01:01:48,040 WORKING TO ENGAGE ALL THE 1312 01:01:48,040 --> 01:01:49,200 STAKEHOLDERS IS REALLY IMPORTANT 1313 01:01:49,200 --> 01:01:51,000 AS WALTER SAID THIS MORNING. 1314 01:01:51,000 --> 01:01:52,440 NOT JUST THOSE AT THE FRONT OF 1315 01:01:52,440 --> 01:01:56,160 THE LINE BUT ABSOLUTELY 1316 01:01:56,160 --> 01:01:57,120 EVERYBODY IN OUR REPRESENTATIVE 1317 01:01:57,120 --> 01:01:58,600 DISEASE COMMUNITIES IS CRITICAL 1318 01:01:58,600 --> 01:02:01,200 TO OUR BEING ABLE TO BE 1319 01:02:01,200 --> 01:02:03,600 SUCCESSFUL AND SUPPORTIVE OF THE 1320 01:02:03,600 --> 01:02:04,120 NEUROLOGICAL DISEASES. 1321 01:02:04,120 --> 01:02:09,200 I BELIEVE PATIENT ORGANIZATIONS 1322 01:02:09,200 --> 01:02:11,280 HAVE BEEN A MAJOR FACTOR. 1323 01:02:11,280 --> 01:02:12,240 A DRIVING FORCE ON THIS 1324 01:02:12,240 --> 01:02:14,320 IMPORTANT TOPIC WORKING WITH 1325 01:02:14,320 --> 01:02:16,000 RESEARCHERS AND INSTITUTIONS TO 1326 01:02:16,000 --> 01:02:18,240 HELP RAISE THEIR AWARENESS THAT 1327 01:02:18,240 --> 01:02:21,680 ALL PATIENT VOICES NEED TO BE 1328 01:02:21,680 --> 01:02:21,880 HEARD. 1329 01:02:21,880 --> 01:02:23,160 I THINK JIM BECK'S PRESENTATION 1330 01:02:23,160 --> 01:02:26,040 IS A GOOD EXAMPLE OF HOW PATIENT 1331 01:02:26,040 --> 01:02:28,280 ORGANIZATIONS CAN HAVE A HUGE 1332 01:02:28,280 --> 01:02:31,640 IMPACT ON THIS AREA AND WE HAVE 1333 01:02:31,640 --> 01:02:35,720 A TERRIFIC PANEL TODAY TO SHARE 1334 01:02:35,720 --> 01:02:38,160 WITH US THEIR EXPERIENCES AND 1335 01:02:38,160 --> 01:02:40,480 REACHING OUT TO RARE DISEASE 1336 01:02:40,480 --> 01:02:41,200 COMMUNITIES. 1337 01:02:41,200 --> 01:02:43,160 THEY'RE COMPLETE BIOS ARE ON THE 1338 01:02:43,160 --> 01:02:44,720 WEBSITE FOR THE FORUM AND I 1339 01:02:44,720 --> 01:02:47,400 ENCOURAGE YOU TO TAKE A LOOK AT 1340 01:02:47,400 --> 01:02:50,720 THOSE BUT I DO WANT TO BRIEFLY 1341 01:02:50,720 --> 01:02:53,400 INTRODUCE OUR PANEL MEMBERS AND 1342 01:02:53,400 --> 01:02:55,080 THEN WE'LL HAVE PRESENTATIONS 1343 01:02:55,080 --> 01:02:56,800 AND THEN DO AS MANY QUESTIONS AS 1344 01:02:56,800 --> 01:02:57,760 TIME WILL ALLOW. 1345 01:02:57,760 --> 01:02:59,600 I ENCOURAGE YOU TO USE THE CHAT 1346 01:02:59,600 --> 01:03:00,840 FUNCTION TO PUT YOUR QUESTIONS 1347 01:03:00,840 --> 01:03:02,520 IN THERE AS YOU THINK OF THEM SO 1348 01:03:02,520 --> 01:03:09,200 YOU DON'T FORGET THEM. 1349 01:03:09,200 --> 01:03:13,160 WE'LL HEAR FIRST FROM DR. DEL 1350 01:03:13,160 --> 01:03:14,960 PILAR TRELLES WITH EXPERTISE IN 1351 01:03:14,960 --> 01:03:17,720 AUTISM SPECTRUM DISORDER AND 1352 01:03:17,720 --> 01:03:19,240 ASSISTANT PROFESSOR IN 1353 01:03:19,240 --> 01:03:20,960 PSYCHIATRY AND HUMAN BEHAVIOR AT 1354 01:03:20,960 --> 01:03:25,200 THE CENTER FOR AUTISM AND 1355 01:03:25,200 --> 01:03:25,960 DEVELOPMENT DISABILITIES IN 1356 01:03:25,960 --> 01:03:27,360 RHODE ISLAND. 1357 01:03:27,360 --> 01:03:30,480 AND HEAR FROM DR. SCHWEDT A 1358 01:03:30,480 --> 01:03:32,640 PROFESSOR OF NEUROLOGY AND VICE 1359 01:03:32,640 --> 01:03:36,480 CHAIR FOR NEUROLOGY RESEARCH AND 1360 01:03:36,480 --> 01:03:39,320 DIRECTOR OF THE UNIT AT MAYO 1361 01:03:39,320 --> 01:03:42,080 CLINIC IN ARIZONA AND SERVES ON 1362 01:03:42,080 --> 01:03:46,000 THE EXECUTIVE COMMUNITY OF THE 1363 01:03:46,000 --> 01:03:47,400 BOARD FOR HEADACHE SOCIETY AND 1364 01:03:47,400 --> 01:03:51,400 MIGRAINE FOUNDATION. 1365 01:03:51,400 --> 01:03:52,560 HEATHER WATKINS IS A DISABILITY 1366 01:03:52,560 --> 01:03:57,240 ADVOCATE, AUTHOR, BLOGGER, WOMAN 1367 01:03:57,240 --> 01:04:02,760 OF MANY TALENTS WHO PROVIDES HER 1368 01:04:02,760 --> 01:04:05,080 EXPERTISE TO COMMUNITY AND 1369 01:04:05,080 --> 01:04:06,680 GOVERNMENT ORGANIZATIONS AS A 1370 01:04:06,680 --> 01:04:08,640 CONSULTANT AND LOOK AT HER BLOG, 1371 01:04:08,640 --> 01:04:11,280 SLOW WALKERS SEE MORE. 1372 01:04:11,280 --> 01:04:12,600 WONDERFUL READ AND IMPORTANT 1373 01:04:12,600 --> 01:04:15,160 INSIGHTS AND LAST BUT NOT LEAST 1374 01:04:15,160 --> 01:04:18,600 WE WILL HEAR FROM INDU NAVAR WHO 1375 01:04:18,600 --> 01:04:21,200 FOLLOWING THE DEATH OF HER 1376 01:04:21,200 --> 01:04:24,000 HUSBAND FROM ALS IN 2019 HAS 1377 01:04:24,000 --> 01:04:26,120 DEDICATED HERSELF TO USING THE 1378 01:04:26,120 --> 01:04:27,400 EXPERTISE AND KNOWLEDGE GAINED 1379 01:04:27,400 --> 01:04:31,920 AS A SILICON VALLEY TECH 1380 01:04:31,920 --> 01:04:33,240 EXECUTIVE TO DEVELOP TECHNOLOGY 1381 01:04:33,240 --> 01:04:34,880 BASED SOLUTIONS TO THE DISCOVER 1382 01:04:34,880 --> 01:04:38,080 OF BIO MARKERS AND NEUROLOGICAL 1383 01:04:38,080 --> 01:04:44,760 DISEASES AND CEO AND FOUNDER OF 1384 01:04:44,760 --> 01:04:48,080 EVERYTHING ALS AND SERVES ON THE 1385 01:04:48,080 --> 01:04:53,480 ADVISORY BOARD OF THE ANSWER ALS 1386 01:04:53,480 --> 01:04:54,560 ORGANIZATION. 1387 01:04:54,560 --> 01:04:59,400 WONDERFUL EXPERTS TO SHARE 1388 01:04:59,400 --> 01:05:09,920 LEARNINGS WITH US THIS MORNING. 1389 01:05:55,240 --> 01:06:00,120 >> I FATHER WAS A NEUROLOGIST 1390 01:06:00,120 --> 01:06:02,280 AND WOULD DO ROUNDS ON THE 1391 01:06:02,280 --> 01:06:03,400 WEEKENDS AND THIS IS THE 1392 01:06:03,400 --> 01:06:04,400 HOSPITAL AND AS A LITTLE GIRL 1393 01:06:04,400 --> 01:06:05,840 I'D LIKE TO GO WITH HIM TO THE 1394 01:06:05,840 --> 01:06:07,320 HOSPITAL TO SPEND TIME WITH HIM 1395 01:06:07,320 --> 01:06:13,160 AND EARLY ON I LEARNED THAT WE 1396 01:06:13,160 --> 01:06:16,800 NEED IN A WORLD OF CONTRAST THE 1397 01:06:16,800 --> 01:06:18,720 HOSPITAL AS BEAUTIFUL AS IT IS 1398 01:06:18,720 --> 01:06:21,720 SITS IN ONE OF THE POOREST 1399 01:06:21,720 --> 01:06:23,080 NEIGHBORHOODS IN LIMA. 1400 01:06:23,080 --> 01:06:26,480 WHEN YOU HAVE THAT CONTRAST YOU 1401 01:06:26,480 --> 01:06:27,760 ALSO HAVE A LOT OF HEALTH CARE 1402 01:06:27,760 --> 01:06:28,440 DISPARITIES. 1403 01:06:28,440 --> 01:06:31,200 WHEN I FIRST CAME TO THE U.S. TO 1404 01:06:31,200 --> 01:06:34,000 PURSUE MY RESIDENCY TRAINING I 1405 01:06:34,000 --> 01:06:35,240 QUICKLY REALIZED THAT THOSE 1406 01:06:35,240 --> 01:06:39,160 HEALTH DISPARITIES WERE PRESENT 1407 01:06:39,160 --> 01:06:41,040 IN THE U.S. AND MORE STRIKING 1408 01:06:41,040 --> 01:06:43,560 GIVEN THE AMOUNT OF RESOURCES 1409 01:06:43,560 --> 01:06:44,920 THAT WE HAVE. 1410 01:06:44,920 --> 01:06:46,960 AFTER I FINISHED MY CLINICAL 1411 01:06:46,960 --> 01:06:48,880 TRAINING I DECIDED TO EMBARK ON 1412 01:06:48,880 --> 01:06:52,960 A CAREER OF RESEARCH AND GOT MY 1413 01:06:52,960 --> 01:06:55,920 FIRST GRANT COMING FROM THE 1414 01:06:55,920 --> 01:07:00,880 CLINICAL WORLD AND WAS VERY 1415 01:07:00,880 --> 01:07:05,240 EXCITE 1416 01:07:05,240 --> 01:07:13,040 EXCITED AND WE HAD PAIRED 1417 01:07:13,040 --> 01:07:15,840 CAREGIVERS WITH ASD WITH KIDS OF 1418 01:07:15,840 --> 01:07:17,440 FAMILIES WHO WERE DIAGNOSED TO 1419 01:07:17,440 --> 01:07:19,080 LEARN HOW TO NAVIGATE THE 1420 01:07:19,080 --> 01:07:29,120 COMPLEX HEALTH CARE SYSTEM. 1421 01:07:29,120 --> 01:07:31,800 I WAS EXCITED AND IT DIDN'T WORK 1422 01:07:31,800 --> 01:07:34,520 AND FAMILIES DIDN'T STICK AND IT 1423 01:07:34,520 --> 01:07:36,160 WAS A HUMBLING EXPERIENCE BUT 1424 01:07:36,160 --> 01:07:37,680 ONE THING WE LEARNED AS WE 1425 01:07:37,680 --> 01:07:40,600 LOOKED AT THE DATA WAS THE 1426 01:07:40,600 --> 01:07:42,960 FAMILIES THAT DID STAY WERE THE 1427 01:07:42,960 --> 01:07:45,000 FAMILIES SOMEHOW CONNECTED TO 1428 01:07:45,000 --> 01:07:47,040 THE MOUNT SINAI HEALTH SYSTEM 1429 01:07:47,040 --> 01:07:47,640 WHERE I WAS. 1430 01:07:47,640 --> 01:07:49,200 THE FIRST LESSON IS IF YOU WANT 1431 01:07:49,200 --> 01:07:51,080 TO REACH COMMUNITIES, YOU NEED 1432 01:07:51,080 --> 01:07:51,720 TO BE IN THE COMMUNITY. 1433 01:07:51,720 --> 01:07:58,280 YOU NEED TONE TO BE PART OF THE 1434 01:07:58,280 --> 01:07:59,320 COMMUNITY AND I HAVE THIS SLIDE 1435 01:07:59,320 --> 01:08:00,920 AS A REPRESENT SOME OF THE WORK 1436 01:08:00,920 --> 01:08:03,080 WITH THEM BECAUSE I WANT YOU TO 1437 01:08:03,080 --> 01:08:05,480 KNOW THIS IS A MODEL THAT TRULY 1438 01:08:05,480 --> 01:08:05,720 WORKS. 1439 01:08:05,720 --> 01:08:07,920 IN THREE YEARS WE CHANGED THE 1440 01:08:07,920 --> 01:08:09,760 DEMOGRAPHICS OF THE FAMILIES WE 1441 01:08:09,760 --> 01:08:15,080 WERE SEEING AT THE AUTISM CENTER 1442 01:08:15,080 --> 01:08:16,640 WHICH IS A RESEARCH CENTER TO A 1443 01:08:16,640 --> 01:08:22,040 GRAPHIC THAT WAS MORE SIMILAR TO 1444 01:08:22,040 --> 01:08:26,960 THE LOCATION WHERE THE MOUNT 1445 01:08:26,960 --> 01:08:27,680 SINAI HOSPITAL SITS. 1446 01:08:27,680 --> 01:08:34,040 THIS IS A WELL DEFINED PUBLIC 1447 01:08:34,040 --> 01:08:36,080 HEALTH MODEL THAT LEVERAGES THE 1448 01:08:36,080 --> 01:08:37,920 RESOURCES BROUGHT IN BY ACADEMIC 1449 01:08:37,920 --> 01:08:40,240 INSTITUTIONS TO THE BENEFIT OF 1450 01:08:40,240 --> 01:08:40,400 ALL. 1451 01:08:40,400 --> 01:08:44,960 CENTRAL TO THIS IDEA IS THE 1452 01:08:44,960 --> 01:08:47,160 THERE'S BI-DIRECTIONAL LEARN AND 1453 01:08:47,160 --> 01:08:47,720 RESEARCHERS AND COMMUNITY 1454 01:08:47,720 --> 01:08:48,920 MEMBERS LEARN FROM ONE ANOTHER. 1455 01:08:48,920 --> 01:08:58,720 THEY WORK AS A TEAM. 1456 01:08:58,720 --> 01:09:00,680 THIS IS A GRAPHIC REPRESENTATION 1457 01:09:00,680 --> 01:09:06,360 OF HOW IT WOULD LOOK AND LOOKED 1458 01:09:06,360 --> 01:09:09,240 AT THE RARE DISEASE CLINIC 1459 01:09:09,240 --> 01:09:11,480 RESEARCH NETWORKS AND THEY WERE 1460 01:09:11,480 --> 01:09:12,880 STRUGGLING TO REACH FAMILIES 1461 01:09:12,880 --> 01:09:15,120 THAT COME FROM UNDER REPRESENTED 1462 01:09:15,120 --> 01:09:20,240 AND UNDER RESOURCED COMMUNITIES. 1463 01:09:20,240 --> 01:09:22,400 WE BASICALLY BROUGHT THEM IN THE 1464 01:09:22,400 --> 01:09:25,560 RESEARCH TEAM AND THAT'S WHAT 1465 01:09:25,560 --> 01:09:28,920 THIS MODEL IS ABOUT AND INCLUDED 1466 01:09:28,920 --> 01:09:30,600 FAMILY MEMBERS AND COMMUNITY 1467 01:09:30,600 --> 01:09:31,280 CLINICIANS IN THE RESEARCH TEAM 1468 01:09:31,280 --> 01:09:36,680 AND THAT'S HOW THE RESEARCH 1469 01:09:36,680 --> 01:09:43,320 STUDY WAS SET UP. 1470 01:09:43,320 --> 01:09:45,200 AND THERE'S SUSTAINABILITY AND 1471 01:09:45,200 --> 01:09:48,000 IN MANY WAYS IT'S THE HARDEST 1472 01:09:48,000 --> 01:09:48,560 PART. 1473 01:09:48,560 --> 01:09:50,960 IN THE INTEREST OF TIME I'M 1474 01:09:50,960 --> 01:09:53,440 GOING TO TALK TO YOU ABOUT 1475 01:09:53,440 --> 01:09:57,600 PARTNERSHIP THAT I FORMED WITH 1476 01:09:57,600 --> 01:10:02,840 THE CENTER WHICH SHOWS THE 1477 01:10:02,840 --> 01:10:07,880 BEAUTY OF THE MODEL. 1478 01:10:07,880 --> 01:10:11,440 THERE'S A NON-PROFIT IN LIMA 1479 01:10:11,440 --> 01:10:14,320 THAT SERVES KIDS WITH DIFFERENT 1480 01:10:14,320 --> 01:10:18,320 ACCOUNTABILITIES AND BELIEVED IN 1481 01:10:18,320 --> 01:10:20,040 THE POWER OF TWO. 1482 01:10:20,040 --> 01:10:22,080 AND IN ORDER TO SUPPORT CHILDREN 1483 01:10:22,080 --> 01:10:22,760 WITH DEVELOPMENT DISABILITIES WE 1484 01:10:22,760 --> 01:10:23,760 NEED TO WORK WITH FAMILIES AS A 1485 01:10:23,760 --> 01:10:33,240 TEAM. 1486 01:10:33,240 --> 01:10:35,640 AND AT FIRST WE WERE BRINGING 1487 01:10:35,640 --> 01:10:39,480 OUR EXPERTISE. 1488 01:10:39,480 --> 01:10:45,000 IT STARTED AN THEY WERE OVER 1489 01:10:45,000 --> 01:10:45,720 BURDENED WITH CLINICAL CARE AND 1490 01:10:45,720 --> 01:10:49,840 THE LAST THING THEY WOULD WOULD 1491 01:10:49,840 --> 01:10:56,280 HAVE THOUGHT POSSIBLE AND I 1492 01:10:56,280 --> 01:11:00,600 THINK PART LY THE WORK WAS 1493 01:11:00,600 --> 01:11:04,760 AMAZING AND INSPIRATIONAL AND WE 1494 01:11:04,760 --> 01:11:05,960 START SOMETHING WONDERFUL 1495 01:11:05,960 --> 01:11:06,400 HAPPENED. 1496 01:11:06,400 --> 01:11:08,520 WE GAVE AIM SEMINAR ON THE 1497 01:11:08,520 --> 01:11:11,000 GENETICS AND GENOMICS IN AUTISM 1498 01:11:11,000 --> 01:11:16,080 CARE AND HOW THAT WAS SHAPING 1499 01:11:16,080 --> 01:11:16,480 THE FIELD. 1500 01:11:16,480 --> 01:11:18,480 SOMETHING SOMETHING THAT WOULD 1501 01:11:18,480 --> 01:11:23,960 HAVE BEEN IN THOUGHT OF ENGAGING 1502 01:11:23,960 --> 01:11:33,200 FAMILIES IN RESEARCH AND IT WAS 1503 01:11:33,200 --> 01:11:37,200 THIS PERFECTLY OIL MACHINE. 1504 01:11:37,200 --> 01:11:46,080 WE HAD AN IRB AND WE RECRUITED 1505 01:11:46,080 --> 01:11:54,920 100 FAMILIES AND WE SAW 40 1506 01:11:54,920 --> 01:11:56,600 FAMILIES RAISING 45 CHILDREN 1507 01:11:56,600 --> 01:11:59,760 WITH AUTISM AND MULTIPLE 1508 01:11:59,760 --> 01:12:00,080 DISABILITIES. 1509 01:12:00,080 --> 01:12:03,400 AND WE DID GENETIC TESTING AND 1510 01:12:03,400 --> 01:12:03,960 ADMINISTERED A NUMBER OF 1511 01:12:03,960 --> 01:12:04,960 CLINICAL MEASURES AND BECAUSE 1512 01:12:04,960 --> 01:12:06,520 YOU WANT TO BALANCE THE NEEDS OF 1513 01:12:06,520 --> 01:12:09,480 THE COMMUNITY WE ADVOCATED TO 1514 01:12:09,480 --> 01:12:12,920 GIVE THEM BACK CLINICAL GENETIC 1515 01:12:12,920 --> 01:12:13,200 RESULTS. 1516 01:12:13,200 --> 01:12:21,200 IT WAS SUPPORTED BY THE AUTISM 1517 01:12:21,200 --> 01:12:21,920 SEQUENCING CONSORTIUM. 1518 01:12:21,920 --> 01:12:27,720 WE FOUND THIS COMMON GOAL AND 1519 01:12:27,720 --> 01:12:32,080 WORKED TOGETHER. 1520 01:12:32,080 --> 01:12:42,600 I THINK WE SAW THE POWER WHEN 1521 01:12:42,880 --> 01:12:52,240 THE COVID-19 PANDEMIC HIT. 1522 01:12:52,240 --> 01:12:53,880 AND WE DIDN'T DO WELL WITH 1523 01:12:53,880 --> 01:12:56,120 FAMILIES STRUGGLING AND THE 1524 01:12:56,120 --> 01:13:00,520 FAMILIES IN PERU WERE DOING 1525 01:13:00,520 --> 01:13:04,520 AMAZINGLY WELL AND THERE WAS A 1526 01:13:04,520 --> 01:13:08,760 WONDERFUL MODEL WORKING WITH 1527 01:13:08,760 --> 01:13:09,720 FAMILIES TRANSITIONING INTO 1528 01:13:09,720 --> 01:13:15,600 LEARNING AND WE SAID PERU, WE 1529 01:13:15,600 --> 01:13:18,440 NEED YOUR HELP. 1530 01:13:18,440 --> 01:13:20,800 AND WE JUST FINISHED THE STUDY 1531 01:13:20,800 --> 01:13:22,560 AND WERE SEEING WONDERFUL 1532 01:13:22,560 --> 01:13:23,480 IMPROVEMENT AND CHILD AND 1533 01:13:23,480 --> 01:13:28,920 CAREGIVER AND I COULD TALK ABOUT 1534 01:13:28,920 --> 01:13:39,320 THAT FOR HOURS AND I THINK THESE 1535 01:13:39,320 --> 01:13:39,960 WORDS ENCAPSULATES WHAT DOING 1536 01:13:39,960 --> 01:13:50,400 THIS KIND OF WORK DOES. 1537 01:14:28,240 --> 01:14:31,000 >> I THINK SHE ENCAPSULATES WHAT 1538 01:14:31,000 --> 01:14:32,680 THIS IS ABOUT AND IT'S PROVEN TO 1539 01:14:32,680 --> 01:14:34,120 BE SUCCESSFUL TO INCREASE THE 1540 01:14:34,120 --> 01:14:35,880 RELEVANCE AND IMPACT OF THE WORK 1541 01:14:35,880 --> 01:14:36,880 WE DO. 1542 01:14:36,880 --> 01:14:42,720 IT DOES FEEL LIKE AN UPHILL IN 1543 01:14:42,720 --> 01:14:45,200 THE PROJECT AND IT'S TAKEN ABOUT 1544 01:14:45,200 --> 01:14:48,520 10 YEARS TO GET HERE BUT THE 1545 01:14:48,520 --> 01:14:51,160 REWARDS HAVE BEEN IMMENSE AND I 1546 01:14:51,160 --> 01:14:57,480 BELIEVE IN THIS TYPE OF MODEL 1547 01:14:57,480 --> 01:14:57,880 LIE 1548 01:14:57,880 --> 01:15:00,040 LIES WHAT WE NEED TO ADDRESS 1549 01:15:00,040 --> 01:15:01,280 HEALTH CARE AND HOPE YOU'LL 1550 01:15:01,280 --> 01:15:03,040 CONSIDER IT IN THINKING OF YOUR 1551 01:15:03,040 --> 01:15:05,040 FUTURE RESEARCH PROJECTS. 1552 01:15:05,040 --> 01:15:06,000 I'D LIKE TO THANK EVERYONE WHO'S 1553 01:15:06,000 --> 01:15:08,000 BEEN PART OF THIS AND IT 1554 01:15:08,000 --> 01:15:13,200 REQUIRES THE SUPPORT OF A LOT OF 1555 01:15:13,200 --> 01:15:19,960 PEOPLE. 1556 01:15:19,960 --> 01:15:21,400 I DIDN'T WANT TO END WITHOUT 1557 01:15:21,400 --> 01:15:21,760 THAT. 1558 01:15:21,760 --> 01:15:31,880 >> FIRST, CONGRATULATIONS. 1559 01:15:31,880 --> 01:15:35,040 WHERE HE LOOK FORWARD TO 1560 01:15:35,040 --> 01:15:40,720 PRESENTING QUESTIONS. 1561 01:15:40,720 --> 01:15:42,560 DR. TODD SCHWEDT. 1562 01:15:42,560 --> 01:15:44,680 >> IT'S AN HONOR TO BE PART OF 1563 01:15:44,680 --> 01:15:47,320 THE MEETING THE LAST TWO DAYS. 1564 01:15:47,320 --> 01:15:48,120 I'LL APOLOGIZE UP FRONT. 1565 01:15:48,120 --> 01:15:50,160 I'M A LITTLE UNDER THE WEATHER. 1566 01:15:50,160 --> 01:15:53,200 I APOLOGIZE FOR MY VOICE IF I 1567 01:15:53,200 --> 01:15:57,840 END UP COUGHING. 1568 01:15:57,840 --> 01:15:59,400 I'LL TALK ABOUT THE IMPORTANCE 1569 01:15:59,400 --> 01:16:05,200 OF INCLUDING PATIENT AS ETHICAL 1570 01:16:05,200 --> 01:16:14,960 PARTNERS IN CLINICAL RESEARCH. 1571 01:16:14,960 --> 01:16:18,960 I WANTED TO START BY LOOKING AT 1572 01:16:18,960 --> 01:16:20,160 PCORI AND WHAT IS PATIENT 1573 01:16:20,160 --> 01:16:21,920 ENGAGEMENT IN RESEARCH. 1574 01:16:21,920 --> 01:16:24,880 IT SAYS IT'S THE MEANINGFUL 1575 01:16:24,880 --> 01:16:25,920 INVOLVEMENT OF PATIENTS 1576 01:16:25,920 --> 01:16:27,160 THROUGHOUT THE ENTIRE RESEARCH 1577 01:16:27,160 --> 01:16:29,200 PROCESS FROM PLANNING THE STUDY 1578 01:16:29,200 --> 01:16:31,040 TO CONDUCTING THE STUDY AS WELL 1579 01:16:31,040 --> 01:16:31,600 AS DISSEMINATING THE STUDY 1580 01:16:31,600 --> 01:16:38,600 RESULTS. 1581 01:16:38,600 --> 01:16:41,520 IT'S VERY CLEAR IT LEADS TO MORE 1582 01:16:41,520 --> 01:16:44,040 SUCCESSFUL PATIENT AND RESEARCH 1583 01:16:44,040 --> 01:16:44,720 PROJECTS THEREFORE YIELDS MORE 1584 01:16:44,720 --> 01:16:53,200 IMPACTFUL RESULTS. 1585 01:16:53,200 --> 01:16:55,440 IT'S MY BELIEF THAT RESEARCHERS 1586 01:16:55,440 --> 01:16:57,200 AND SCIENTISTS SHOULD NO LONGER 1587 01:16:57,200 --> 01:16:59,360 BE DETERMINING THE MOST 1588 01:16:59,360 --> 01:17:00,960 IMPORTANT CLINICAL RESEARCH 1589 01:17:00,960 --> 01:17:03,520 QUESTIONS OR OUTCOMES OR METHODS 1590 01:17:03,520 --> 01:17:06,520 IN ISOLATION BUT WITH PATIENT 1591 01:17:06,520 --> 01:17:06,800 PARTNERS. 1592 01:17:06,800 --> 01:17:08,720 SO JUST A RULE FOR MYSELF, I 1593 01:17:08,720 --> 01:17:10,200 BELIEVE IF WE'RE ASKING PATIENTS 1594 01:17:10,200 --> 01:17:12,400 TO PARTICIPATE IN SUBJECTS WE 1595 01:17:12,400 --> 01:17:13,400 SHOULD INCLUDE PATIENTS AS 1596 01:17:13,400 --> 01:17:17,520 EQUITABLE RESEARCH PARTNERS. 1597 01:17:17,520 --> 01:17:21,200 I JUST WANT TO TALK ABOUT OUR 1598 01:17:21,200 --> 01:17:22,640 RECENT EXPERIENCES AS INVOLVING 1599 01:17:22,640 --> 01:17:24,480 PATIENTS AS EQUITABLE RESEARCH 1600 01:17:24,480 --> 01:17:25,160 PARTNERS. 1601 01:17:25,160 --> 01:17:30,720 IT'S PART OF A PRAGMATIC 1602 01:17:30,720 --> 01:17:32,120 RANDOMIZED PROSPECTIVE CLINICAL 1603 01:17:32,120 --> 01:17:36,360 TRIAL CALLED THE MEDICATION 1604 01:17:36,360 --> 01:17:38,600 OVERUSE TREATMENT STRATEGY 1605 01:17:38,600 --> 01:17:40,920 TRIAL. 1606 01:17:40,920 --> 01:17:46,040 IT'S A PCORI TRIAL AND ENROLLED 1607 01:17:46,040 --> 01:17:47,440 PATIENTS FROM ALL OVER THE 1608 01:17:47,440 --> 01:17:48,560 UNITED STATES AND COMPARED TWO 1609 01:17:48,560 --> 01:17:50,400 TREATMENT STRATEGIES FOR PEOPLE 1610 01:17:50,400 --> 01:17:53,640 WHO HAVE WHAT'S CALLED CHRONIC 1611 01:17:53,640 --> 01:17:57,120 MIGRAINE IT REFERS TO THOSE 1612 01:17:57,120 --> 01:17:59,200 INDIVIDUALS WHO HAVE HIGH 1613 01:17:59,200 --> 01:18:02,720 FREQUENCY MIGRAINE 15 OR MORE 1614 01:18:02,720 --> 01:18:06,400 HEADACHE DAYS PER MONTH AND AT 1615 01:18:06,400 --> 01:18:08,080 LEAST EIGHT DAYS PER MONTH WITH 1616 01:18:08,080 --> 01:18:12,160 THE FULL-BLOWN SYSTEMS AND MEET 1617 01:18:12,160 --> 01:18:15,760 THE CRITERIA FOR MEDICATION 1618 01:18:15,760 --> 01:18:18,240 OVERUSE AND END YOU HAVE NEEDING 1619 01:18:18,240 --> 01:18:20,520 ADD-NEEDED MEDICATION TO TREAT 1620 01:18:20,520 --> 01:18:22,440 SYMPTOMS MORE FREQUENTLY THAN 1621 01:18:22,440 --> 01:18:32,880 PRE-DEFINED THRESHOLDS. 1622 01:18:37,080 --> 01:18:37,560 IN THE PLANNING STAGE WE 1623 01:18:37,560 --> 01:18:41,640 DISCUSSED THE IDEA AT A NATIONAL 1624 01:18:41,640 --> 01:18:44,520 PATIENT MEETING AND HAD SURVEYS 1625 01:18:44,520 --> 01:18:47,560 AT IN-PERSON MEETINGS AND HAD 1626 01:18:47,560 --> 01:18:48,800 FACEBOOK GROUPS AND FOCUS GROUP 1627 01:18:48,800 --> 01:18:50,160 MEETINGS WITH PEOPLE WHO HAVE 1628 01:18:50,160 --> 01:18:52,040 THE DISEASE THAT WE WERE GOING 1629 01:18:52,040 --> 01:18:53,240 TO STUDY AS WELL AS THEIR 1630 01:18:53,240 --> 01:19:03,440 CAREGIVERS. 1631 01:19:03,760 --> 01:19:08,200 WE WANTED TO ADDRESS THE ISSUE 1632 01:19:08,200 --> 01:19:11,840 ABOUT THE DISEASE AND WHICH 1633 01:19:11,840 --> 01:19:16,040 OUTCOMES ARE MOST MEANINGFUL AND 1634 01:19:16,040 --> 01:19:17,080 RELEVANT AND THROUGH DISCUSSION 1635 01:19:17,080 --> 01:19:19,000 AND SURVEYS AND PATIENTS WERE 1636 01:19:19,000 --> 01:19:21,200 RANKING WHAT PRIMARY AND 1637 01:19:21,200 --> 01:19:22,800 SECONDARY OUTCOMES THEY FELT WE 1638 01:19:22,800 --> 01:19:24,600 SHOULD LOOK AT AND ALL WAS DONE 1639 01:19:24,600 --> 01:19:31,720 WITH THE HELP OF A PATIENT 1640 01:19:31,720 --> 01:19:33,040 CO-INVESTIGATOR AND THERE WAS 1641 01:19:33,040 --> 01:19:35,520 ONE CO-INVESTIGATOR WHO WAS A 1642 01:19:35,520 --> 01:19:42,120 PATIENT PARTNER, TERRY ROBERT. 1643 01:19:42,120 --> 01:19:45,560 >> THEN MOVING TO THE NEXT PHASE 1644 01:19:45,560 --> 01:19:47,960 OUR PATIENT PARTNERS HELP WITH 1645 01:19:47,960 --> 01:19:49,760 WRITING MATERIALS AND OUR 1646 01:19:49,760 --> 01:19:52,760 PATIENT CO-INVESTIGATOR FILMED A 1647 01:19:52,760 --> 01:19:55,120 VIDEO OF HERSELF DESCRIBING THE 1648 01:19:55,120 --> 01:19:57,200 STUDY IN PATIENT-FRIENDLY TERMS 1649 01:19:57,200 --> 01:19:59,040 AND WAS SENT TO THE SIGHT AND 1650 01:19:59,040 --> 01:20:01,240 HAD THE OPTION TO USE IT AND 1651 01:20:01,240 --> 01:20:02,520 SHOW IT TO POTENTIAL 1652 01:20:02,520 --> 01:20:03,280 PARTICIPANTS AS THEY WERE 1653 01:20:03,280 --> 01:20:06,200 CONSIDERED WHETHER OR NOT TO 1654 01:20:06,200 --> 01:20:08,120 PARTICIPATE IN THE CLINICAL 1655 01:20:08,120 --> 01:20:09,160 TRIAL. 1656 01:20:09,160 --> 01:20:10,280 PATIENT PARTNERS HELPED THROUGH 1657 01:20:10,280 --> 01:20:12,960 VIEWING AND EDITING 1658 01:20:12,960 --> 01:20:14,520 QUESTIONNAIRES AND HEADACHE 1659 01:20:14,520 --> 01:20:16,160 DIARIES AND SERVED ON THE 1660 01:20:16,160 --> 01:20:18,240 STEERING COMMITTEE AND DSMB. 1661 01:20:18,240 --> 01:20:21,960 THEY CO-PRESENTED AT ANNUAL 1662 01:20:21,960 --> 01:20:24,200 UPDATE MEETINGS OFTEN TIMES 1663 01:20:24,200 --> 01:20:27,040 CALLED ANNUAL INVESTIGATOR 1664 01:20:27,040 --> 01:20:28,400 MEETINGS AND THROUGH THE 1665 01:20:28,400 --> 01:20:30,960 PARTICIPATION WE ADMINISTERED 1666 01:20:30,960 --> 01:20:32,680 SURVEYS THEY CAN ANSWER 1667 01:20:32,680 --> 01:20:34,560 ANONYMOUSLY. 1668 01:20:34,560 --> 01:20:36,000 IT A SURVEY THAT WOULD ASSESS 1669 01:20:36,000 --> 01:20:37,640 THEIR PERCEPTION OF HOW INVOLVED 1670 01:20:37,640 --> 01:20:41,280 THEY WERE IN WHETHER OR NOT THEY 1671 01:20:41,280 --> 01:20:43,640 WERE BEING TREATED EQUITABLY. 1672 01:20:43,640 --> 01:20:46,080 IF THERE'S ROOM FOR SUGGESTIONS 1673 01:20:46,080 --> 01:20:47,080 FOR IMPROVEMENT WE'D ACT TO MAKE 1674 01:20:47,080 --> 01:20:57,200 THOSE IMPROVEMENTS. 1675 01:20:57,200 --> 01:20:58,680 OUR PATIENT PARTNERS HELP. 1676 01:20:58,680 --> 01:21:01,200 IT ENDS UP THE TERM MEDICATION 1677 01:21:01,200 --> 01:21:04,640 OVERUSE SO THAT'S THE OFFICIAL 1678 01:21:04,640 --> 01:21:08,960 TERM FOR PEOPLE USING ADD-NEEDED 1679 01:21:08,960 --> 01:21:09,560 MEDICINES ABOVE A FREQUENCY 1680 01:21:09,560 --> 01:21:11,400 THRESHOLD AND ENDS UP FOR SOME 1681 01:21:11,400 --> 01:21:13,240 PATIENTS AND CLINICIANS THE TERM 1682 01:21:13,240 --> 01:21:15,360 MEDICATION OVERUSE HAS A 1683 01:21:15,360 --> 01:21:17,200 NEGATIVE CONNOTATION. 1684 01:21:17,200 --> 01:21:18,600 IT SOUNDS LIKE WE'RE BLAMING THE 1685 01:21:18,600 --> 01:21:20,920 PATIENT FOR THEIR OWN CONDITION. 1686 01:21:20,920 --> 01:21:24,160 AS THE NOT THE INTENT AND OUR 1687 01:21:24,160 --> 01:21:25,160 PATIENT PARTNERS HELPED TO 1688 01:21:25,160 --> 01:21:28,320 REFRAME THE STUDY AND THINK OF 1689 01:21:28,320 --> 01:21:31,480 BETTER WAYS MORE ACCEPTABLE WAYS 1690 01:21:31,480 --> 01:21:32,520 TO DESCRIBE THE DISEASE WHEN 1691 01:21:32,520 --> 01:21:35,560 WE'RE ASKING PATIENTS TO 1692 01:21:35,560 --> 01:21:41,520 PARTICIPATE IN THE STUDY. 1693 01:21:41,520 --> 01:21:42,920 AND THERE'S THE IMPORTANCE OF 1694 01:21:42,920 --> 01:21:43,800 WHAT WE WERE DOING AND THE 1695 01:21:43,800 --> 01:21:45,440 IMPORTANCE OF FINDING THE 1696 01:21:45,440 --> 01:21:51,440 RESULTS. 1697 01:21:51,440 --> 01:21:53,520 WE HAD TO CHANGE OUR SAMPLE SIZE 1698 01:21:53,520 --> 01:21:59,120 DURING THE STUDY WHICH MEANT WE 1699 01:21:59,120 --> 01:22:02,760 HAD TO CHANGE OUR NON 1700 01:22:02,760 --> 01:22:05,160 INFERIORITY PROBLEM AND CHANGING 1701 01:22:05,160 --> 01:22:10,680 THE NON-INFERIORITY MARGIN WOULD 1702 01:22:10,680 --> 01:22:15,640 NOT CHANGE THE STUDY. 1703 01:22:15,640 --> 01:22:18,200 THEY HELPED DISSEMINATE RESULTS 1704 01:22:18,200 --> 01:22:21,320 AND HAD THEM PRESENT DATA AT 1705 01:22:21,320 --> 01:22:22,280 CONFERENCES. 1706 01:22:22,280 --> 01:22:23,520 THEY REGULARLY SHARED PROGRESS 1707 01:22:23,520 --> 01:22:25,880 AND RESULTS IN SOCIAL MEDIA AND 1708 01:22:25,880 --> 01:22:27,240 CONTRIBUTED TO THE STUDY WEBSITE 1709 01:22:27,240 --> 01:22:37,520 AND NEWSLETTER. 1710 01:22:39,040 --> 01:22:42,320 A PERSON SAYS BEING A PATIENT 1711 01:22:42,320 --> 01:22:45,920 ADVOCATE LET ME SEE HOW CRUCIAL 1712 01:22:45,920 --> 01:22:48,920 IT IS TO PATIENTS AND PARTNERS 1713 01:22:48,920 --> 01:22:51,000 AND HELPED THE RESEARCH WORK 1714 01:22:51,000 --> 01:22:56,960 BETTER AND FELT DEEPLY INVOLVED. 1715 01:22:56,960 --> 01:22:59,480 AS SOMEONE ONE MIGRAINE DISEASE 1716 01:22:59,480 --> 01:23:00,640 THE EXPERIENCE GAVE ME GREAT 1717 01:23:00,640 --> 01:23:02,360 HOPE FOR BETTER TREATMENTS FOR 1718 01:23:02,360 --> 01:23:04,440 THOSE OF US WHO SUFFER WITH THIS 1719 01:23:04,440 --> 01:23:05,080 CONDITION. 1720 01:23:05,080 --> 01:23:07,760 I HOPE TO WORK ON MORE MIGRAINE 1721 01:23:07,760 --> 01:23:10,160 RESEARCH TRIALS IN THIS 1722 01:23:10,160 --> 01:23:11,640 CAPACITY. 1723 01:23:11,640 --> 01:23:13,920 FEEL FREE TO REACH OUT WITH 1724 01:23:13,920 --> 01:23:14,600 QUESTIONS OR COMMENTS AT MY 1725 01:23:14,600 --> 01:23:24,960 E-MAIL ADDRESS THERE. 1726 01:23:28,840 --> 01:23:30,080 >> THANK YOU. 1727 01:23:30,080 --> 01:23:31,880 NEXT WE'LL HEAR FROM HEATHER 1728 01:23:31,880 --> 01:23:32,120 WATKINS. 1729 01:23:32,120 --> 01:23:38,320 WE HAVE A RE-RECORDED VIDEO. 1730 01:23:38,320 --> 01:23:48,840 SHE'LL BE WITH US LIVE FOR Q&A. 1731 01:23:51,600 --> 01:23:54,120 >> I'M A BOSTON-BASED ADVOCATE 1732 01:23:54,120 --> 01:23:56,640 AND MOTHER AND AUTHOR AND 1733 01:23:56,640 --> 01:23:58,960 BLOGGER AND A COMMUNITY BUILDER. 1734 01:23:58,960 --> 01:24:01,680 I SERVE ON A HANDFUL OF 1735 01:24:01,680 --> 01:24:03,680 DISABILITY AND RELATED BOARDS 1736 01:24:03,680 --> 01:24:06,480 AND CONTRACTS INCLUDING AS A 1737 01:24:06,480 --> 01:24:08,960 FORMER CHAIRPERSON FOR THE 1738 01:24:08,960 --> 01:24:11,240 BOSTON MAYOR'S COMMISSION FOR 1739 01:24:11,240 --> 01:24:11,760 PERSONS WITH DISABILITIES 1740 01:24:11,760 --> 01:24:22,040 ADVISORY BOARD. 1741 01:24:37,280 --> 01:24:39,320 I WAS ABLE TO LEVERAGE MY LENS 1742 01:24:39,320 --> 01:24:41,280 AS A BLACK DISABLED WOMAN WHO 1743 01:24:41,280 --> 01:24:45,200 WAS BORN WIN A FORM OF MUSCULAR 1744 01:24:45,200 --> 01:24:47,240 DYSTROPHY AND ALSO DIDN'T ALWAYS 1745 01:24:47,240 --> 01:24:51,040 USE MOBILITY AIDS SUCH AS A CANE 1746 01:24:51,040 --> 01:24:53,560 AND MANUAL WHEELCHAIR AND I ALSO 1747 01:24:53,560 --> 01:25:00,640 USE A VENTILATOR TO ASSIST MY 1748 01:25:00,640 --> 01:25:08,560 BREATHING AND WHEN I'M RESTING 1749 01:25:08,560 --> 01:25:09,240 AT NIGHT. 1750 01:25:09,240 --> 01:25:14,120 THERE WAS GROWTH TAKING PLACE 1751 01:25:14,120 --> 01:25:17,080 AND A WONDERFUL JOURNEY IN 1752 01:25:17,080 --> 01:25:19,520 COALESCING WITH OTHER 1753 01:25:19,520 --> 01:25:20,400 LIKE-MINDED FOLKS IN 1754 01:25:20,400 --> 01:25:22,640 COLLABORATIVE EFFORT WORKING 1755 01:25:22,640 --> 01:25:27,800 TOWARDS BENEFICIAL CHANGE IN 1756 01:25:27,800 --> 01:25:35,560 WORKING ON ADVISORY BOARDS AND 1757 01:25:35,560 --> 01:25:38,440 THE DISABILITY POLICY CONSORTIUM 1758 01:25:38,440 --> 01:25:40,720 AND THE NATIONAL RESEARCH CENTER 1759 01:25:40,720 --> 01:25:46,400 FOR PARENTS WITH DISABILITIES 1760 01:25:46,400 --> 01:25:48,520 ADVISORY BOARD AND ALSO OPEN 1761 01:25:48,520 --> 01:25:53,200 DOOR ARTS. 1762 01:25:53,200 --> 01:26:03,760 I WAS ABLE TO GET TOGETHER WITH 1763 01:26:08,760 --> 01:26:10,960 PEOPLE FROM DIFFERENT WALKS OF 1764 01:26:10,960 --> 01:26:11,840 LIFE AND SHARING THEIR 1765 01:26:11,840 --> 01:26:13,240 EXPERIENCE BEHIND WHAT IT MEANS 1766 01:26:13,240 --> 01:26:16,440 TO LIVE WITH DISABILITIES 1767 01:26:16,440 --> 01:26:19,240 WHETHER THEY'RE A PARENT, NOT A 1768 01:26:19,240 --> 01:26:24,920 PARENT, CHRONIC ILLNESS, WHETHER 1769 01:26:24,920 --> 01:26:28,600 THEY ARE NONPROFITS OR PARTY 1770 01:26:28,600 --> 01:26:33,200 GOERS OR COMMUNITY BUILDERS AND 1771 01:26:33,200 --> 01:26:36,280 HAVE ALL THESE DIFFERENT LENSES 1772 01:26:36,280 --> 01:26:39,200 AND LIVED EXPERIENCES THAT 1773 01:26:39,200 --> 01:26:42,560 PROVED CRITICAL FOR GIVING INPUT 1774 01:26:42,560 --> 01:26:46,040 ON MANY QUALITY OF LIFE CONCERNS 1775 01:26:46,040 --> 01:26:51,120 AND AROUND HOUSING AND HEALTH 1776 01:26:51,120 --> 01:26:54,560 CARE, EDUCATION AND EMPLOYMENT 1777 01:26:54,560 --> 01:26:56,840 AND THEY IMPACT SO MUCH OF WHAT 1778 01:26:56,840 --> 01:26:58,680 WE DO ON A DAILY BASIS. 1779 01:26:58,680 --> 01:27:09,200 IT IMPACTS HOW YOU SHOP, DINE, 1780 01:27:09,200 --> 01:27:11,320 SOCIALIZE HOW YOU VOTE AND 1781 01:27:11,320 --> 01:27:17,200 PARENT AND OTHER AREAS THAT 1782 01:27:17,200 --> 01:27:23,680 IMPACT US IN SO MANY WAYS. 1783 01:27:23,680 --> 01:27:27,600 MY INPUT AND INVOLVEMENT IN 1784 01:27:27,600 --> 01:27:28,440 DISABILITY RIGHTS ADVOCACY COMES 1785 01:27:28,440 --> 01:27:33,760 AND BRINGS ALL THOSE IDENTITIES 1786 01:27:33,760 --> 01:27:39,160 I SPOKE TO ABOUT BEING A BLACK 1787 01:27:39,160 --> 01:27:40,920 DISABLED AND CAREGIVER AND DO SO 1788 01:27:40,920 --> 01:27:43,600 WITH THE HOPES OF HELPING TO 1789 01:27:43,600 --> 01:27:49,240 INFORM PUBLIC AND SOCIAL POLICY 1790 01:27:49,240 --> 01:27:59,640 AND IN A BENEFICIAL AND 1791 01:28:00,240 --> 01:28:01,200 MEANINGFUL WAY AND OPPORTUNITIES 1792 01:28:01,200 --> 01:28:03,040 COME FROM ACROSS THE LANDSCAPE 1793 01:28:03,040 --> 01:28:05,480 OR LACK OF MEANINGFUL DEPICTIONS 1794 01:28:05,480 --> 01:28:11,560 AND THERE'S A DANGER WITH THAT 1795 01:28:11,560 --> 01:28:15,640 WHEN WE'RE NOT WELL INFORMED 1796 01:28:15,640 --> 01:28:17,560 ABOUT WHEN IT MEANS TO LIVE WITH 1797 01:28:17,560 --> 01:28:18,920 A DISABILITY OR DISABILITIES. 1798 01:28:18,920 --> 01:28:20,040 BECAUSE THEY CAN MAKE THEIR WAY 1799 01:28:20,040 --> 01:28:30,440 INTO THE LEGISLATURE. 1800 01:28:31,560 --> 01:28:33,280 I VALUE THE CONVERSATIONS SUCH 1801 01:28:33,280 --> 01:28:34,920 AS WE'RE HAVING TODAY EVOLVING 1802 01:28:34,920 --> 01:28:40,160 AROUND WORKING WITH OTHER PEOPLE 1803 01:28:40,160 --> 01:28:43,120 ON PROFIT BOARDS AND HAVING 1804 01:28:43,120 --> 01:28:44,440 MEANINGFUL CONVERSATIONS AND 1805 01:28:44,440 --> 01:28:49,720 DIALOGUES TO HEAR OTHER PEOPLE'S 1806 01:28:49,720 --> 01:29:00,240 WAYS OF LIFE AND HOW THEY MOVE 1807 01:29:04,400 --> 01:29:14,880 SYSTEMS AND MAKING CONTRIBUTIONS 1808 01:29:18,960 --> 01:29:26,120 IN MANY LOCATION S LOCATIONS ANL 1809 01:29:26,120 --> 01:29:29,240 CONTRIBUTIONS THAT IMPACT THE 1810 01:29:29,240 --> 01:29:30,480 ENTIRE COMMUNITY. 1811 01:29:30,480 --> 01:29:33,960 SO WE WORK WITH SISTER 1812 01:29:33,960 --> 01:29:35,120 ORGANIZATIONS. 1813 01:29:35,120 --> 01:29:36,360 HERE IN BOSTON WE HAVE BOSTON 1814 01:29:36,360 --> 01:29:40,600 CENTER FOR INDEPENDENT LIVING 1815 01:29:40,600 --> 01:29:45,320 AND DISABILITY POLICY CONSORTIUM 1816 01:29:45,320 --> 01:29:47,560 AND WORKING ON THE MAYOR'S 1817 01:29:47,560 --> 01:29:52,600 COMMISSION WITH DISABLED PERSONS 1818 01:29:52,600 --> 01:29:54,760 AND THESE ARE PEOPLE FROM ACROSS 1819 01:29:54,760 --> 01:29:58,800 THE CITY AND STATE AND THERE'S 1820 01:29:58,800 --> 01:30:00,600 VALUE IN THAT BECAUSE WHEN WE 1821 01:30:00,600 --> 01:30:05,560 TALK ABOUT THESE IMPORTANT 1822 01:30:05,560 --> 01:30:07,520 CONVERSAT 1823 01:30:07,520 --> 01:30:08,560 CONVERSATIONS WE GET TO 1824 01:30:08,560 --> 01:30:10,200 UNDERSTAND PEOPLE IN A 1825 01:30:10,200 --> 01:30:12,080 COMPREHENSIVE WAY AND THAT'S 1826 01:30:12,080 --> 01:30:14,560 IMPORTANT WHETHER YOU WERE BORN 1827 01:30:14,560 --> 01:30:17,520 WITH A DISABILITY OR ACQUIRED IT 1828 01:30:17,520 --> 01:30:21,920 AND THAT'S THE IMPACT THAT I 1829 01:30:21,920 --> 01:30:25,200 THINK IS A WONDERFUL MISSION AND 1830 01:30:25,200 --> 01:30:31,800 JOURNEY AND JOB I HAVE IN 1831 01:30:31,800 --> 01:30:36,240 LENDING MY EXPERIENCES IN THAT 1832 01:30:36,240 --> 01:30:38,360 KIND OF WAY SO I'M HAPPY TO BE 1833 01:30:38,360 --> 01:30:42,120 HERE AND SHARE MY PERSPECTIVE, 1834 01:30:42,120 --> 01:30:43,880 OUR PERSONAL PERSPECTIVE IN 1835 01:30:43,880 --> 01:30:44,920 COALESCING WITH OTHER PEOPLE SO 1836 01:30:44,920 --> 01:30:45,560 THANK YOU VERY MUCH FOR HAVING 1837 01:30:45,560 --> 01:30:55,800 ME HERE TODAY. 1838 01:30:58,600 --> 01:31:01,040 >> THANK YOU FOR SHARING YOUR 1839 01:31:01,040 --> 01:31:01,240 STORY. 1840 01:31:01,240 --> 01:31:08,640 NEXT WE HAVE INDU NAVAR. 1841 01:31:08,640 --> 01:31:11,280 >> THANK YOU FOR HAVING ME. 1842 01:31:11,280 --> 01:31:17,080 I'M HONORED TO SHARE OUR STORY. 1843 01:31:17,080 --> 01:31:19,320 EVERYTHING IS FOCUSSED ON FUTURE 1844 01:31:19,320 --> 01:31:21,760 OF DIGITAL BIOMARKERS, BRINGING 1845 01:31:21,760 --> 01:31:24,680 IN TECHNOLOGY, INNOVATIONS TO 1846 01:31:24,680 --> 01:31:25,320 NEUROLOGICAL DISEASES STARTING 1847 01:31:25,320 --> 01:31:33,200 WITH ALS AND YOU CAN SEE SOME OF 1848 01:31:33,200 --> 01:31:37,200 THE PARTNERSHIP IN THE 1849 01:31:37,200 --> 01:31:37,560 PRESENTATION. 1850 01:31:37,560 --> 01:31:38,760 WHY IS THIS IMPORTANT? 1851 01:31:38,760 --> 01:31:39,920 MOST ARE HERE BECAUSE IT'S A 1852 01:31:39,920 --> 01:31:41,280 GROWING PROBLEM. 1853 01:31:41,280 --> 01:31:46,560 IT'S NOT A PROBLEM CONTAINED AND 1854 01:31:46,560 --> 01:31:48,240 THIS IS MY INTEREST IN LOOKING 1855 01:31:48,240 --> 01:31:51,680 AT THIS MORE DEEPLY AND THE COST 1856 01:31:51,680 --> 01:31:55,160 OF NEUROLOGICAL DISEASES IS 1857 01:31:55,160 --> 01:31:57,360 EXPENSIVE AND I WILL SHOCK WITH 1858 01:31:57,360 --> 01:32:00,720 MY OWN JOURNEY I'LL TALK A 1859 01:32:00,720 --> 01:32:02,600 LITTLE BIT ABOUT GOING THROUGH 1860 01:32:02,600 --> 01:32:04,640 MY HUSBAND'S DIAGNOSIS OF ALS 1861 01:32:04,640 --> 01:32:10,600 AND SEEING HOW THE BIG PHARMA 1862 01:32:10,600 --> 01:32:13,000 COMPANIES ARE MOVING AWAY FROM 1863 01:32:13,000 --> 01:32:13,840 NEUROLOGICAL DISEASES BECAUSE 1864 01:32:13,840 --> 01:32:16,720 THERE'S NO WAY TO MEASURE IN AN 1865 01:32:16,720 --> 01:32:21,080 OBJECTIVE WAY IN A TRIAL AND 1866 01:32:21,080 --> 01:32:26,080 THIS MONTH IS MY HUSBAND'S 1867 01:32:26,080 --> 01:32:29,000 BIRTHDAY MONTH AND WE LOST HIM 1868 01:32:29,000 --> 01:32:31,240 IN 2019. 1869 01:32:31,240 --> 01:32:34,920 MY HUSBAND WAS BE AN INNOVATOR 1870 01:32:34,920 --> 01:32:37,800 AND A MEMBER OF CLOUD, AMAZON 1871 01:32:37,800 --> 01:32:44,920 AND WAS THERE 18 YEARS AND BUILT 1872 01:32:44,920 --> 01:32:47,400 TOOLS USED BY MANY RESEARCHERS 1873 01:32:47,400 --> 01:32:49,280 TODAY AND THE SHOCK WAS WE WENT 1874 01:32:49,280 --> 01:32:52,040 EARLY IN THE NEUROLOGIST AND 1875 01:32:52,040 --> 01:32:55,080 WHAT WE HEARD WAS COME BACK 1876 01:32:55,080 --> 01:32:57,200 EIGHT, NINE MONTHS AND SEE HOW 1877 01:32:57,200 --> 01:32:58,640 MUCH WORSE YOU'RE GOING TO BE 1878 01:32:58,640 --> 01:33:03,960 AND STILL RINGS IN MY EAR ABOUT 1879 01:33:03,960 --> 01:33:09,080 WASTING AWAY THE TIME WHEN HE'S 1880 01:33:09,080 --> 01:33:14,920 SUPPOSED TO BE WAITING TO GET 1881 01:33:14,920 --> 01:33:17,000 BETTER AND WAITING TO BE 1882 01:33:17,000 --> 01:33:17,320 DIAGNOSED. 1883 01:33:17,320 --> 01:33:19,800 AFTER HE PASSED AWAY ONE THING 1884 01:33:19,800 --> 01:33:23,200 MY FATHER TOLD ME WAS NOW THAT 1885 01:33:23,200 --> 01:33:24,400 YOU KNOW SO MUCH ABOUT THE 1886 01:33:24,400 --> 01:33:27,680 DISEASE AND SORRY, I GET TEARY 1887 01:33:27,680 --> 01:33:29,480 EYED WHEN I TALK ABOUT THE 1888 01:33:29,480 --> 01:33:31,840 STORY, WHAT ARE YOU GOING TO DO 1889 01:33:31,840 --> 01:33:33,520 WITH IT IS THE QUESTION? 1890 01:33:33,520 --> 01:33:36,720 WHEN I LOOKED AT HARD AT WHAT IT 1891 01:33:36,720 --> 01:33:38,720 IS, I'M NOT AN NEURO SCIENTIST 1892 01:33:38,720 --> 01:33:40,120 OR M.D. BUT HAVE A LOT OF 1893 01:33:40,120 --> 01:33:41,560 INFORMATION AND EXPERIENCE THAT 1894 01:33:41,560 --> 01:33:46,000 I CAN BRING TO THE TABLE AND I'M 1895 01:33:46,000 --> 01:33:47,040 AN ENTREPRENEUR. 1896 01:33:47,040 --> 01:33:49,120 I BUILT A LOT OF SOFTWARE 1897 01:33:49,120 --> 01:33:53,200 COMPANIES INCLUDING WHAT TODAY'S 1898 01:33:53,200 --> 01:33:58,760 WEB MD AN ORIGINAL TEAM MEMBERS 1899 01:33:58,760 --> 01:34:01,880 AND WORKING IN THIS COMMUNITY 1900 01:34:01,880 --> 01:34:03,880 BACK AFTER HAVING LOST MY 1901 01:34:03,880 --> 01:34:10,560 HUSBAND I HAD TO THINK HOW DO I 1902 01:34:10,560 --> 01:34:11,200 FACE SMIS DISEASE I NEEDED TO 1903 01:34:11,200 --> 01:34:13,320 LOOK AT MY FEARS AND MY HUSBAND 1904 01:34:13,320 --> 01:34:17,200 INSPIRES ME EVERY DAY TO DO 1905 01:34:17,200 --> 01:34:22,200 THAT. 1906 01:34:22,200 --> 01:34:25,000 IN HIS HONOR I WANT TO IMPACT 1907 01:34:25,000 --> 01:34:29,400 THE DISEASE BECAUSE I DON'T WANT 1908 01:34:29,400 --> 01:34:35,080 HIM TO BE REMEMBERED AS SOMEONE 1909 01:34:35,080 --> 01:34:36,680 WHO LOST THEIR LIFE TO ALS BUT 1910 01:34:36,680 --> 01:34:38,640 BRING TREATMENT AND BIOMARKERS 1911 01:34:38,640 --> 01:34:39,480 TO THIS DISEASE. 1912 01:34:39,480 --> 01:34:44,320 THE SKILL SET I HAVE IS LIKE 1913 01:34:44,320 --> 01:34:49,240 JANET MENTIONED I STARTED MANY 1914 01:34:49,240 --> 01:34:53,200 COMPANIES AND SIT ON A RESULT 1915 01:34:53,200 --> 01:34:53,440 BOARDS. 1916 01:34:53,440 --> 01:34:57,360 I DO HAVE ENDURANCE AND KNOW HOW 1917 01:34:57,360 --> 01:34:59,440 TO BUILD ALIGNMENT AND FAST 1918 01:34:59,440 --> 01:35:01,560 LEARNER AND EXPERIENCE IN 1919 01:35:01,560 --> 01:35:04,200 BUILDING TEAMS AND GROWING A 1920 01:35:04,200 --> 01:35:04,440 BUSINESS. 1921 01:35:04,440 --> 01:35:06,560 WITH THESE TRAITS AND SKILLS I 1922 01:35:06,560 --> 01:35:10,000 SET OUT TO START EVERYTHING ALS 1923 01:35:10,000 --> 01:35:15,720 AND FOUNDATION AND THE PRIMARY 1924 01:35:15,720 --> 01:35:20,760 GOAL IS TO LOOK AT AT THE 1925 01:35:20,760 --> 01:35:25,240 SUBJECTIVE MEASURE OF 1926 01:35:25,240 --> 01:35:29,360 PROGRESSION TRACKING. 1927 01:35:29,360 --> 01:35:32,840 AND I HAD NO IDEA IT WAS THE 1928 01:35:32,840 --> 01:35:35,440 GOLD MEASURE FOR PROGRESSION 1929 01:35:35,440 --> 01:35:36,840 TRACKING. 1930 01:35:36,840 --> 01:35:39,440 MY HUSBAND WOULD LOOK TO ME FOR 1931 01:35:39,440 --> 01:35:41,280 THESE QUESTIONS AND I WOULD 1932 01:35:41,280 --> 01:35:44,960 ANSWER AND I THOUGHT THEY WERE 1933 01:35:44,960 --> 01:35:47,080 AT&T, MOBILE SURVEY QUESTIONS 1934 01:35:47,080 --> 01:35:51,480 HOW DO YOU RATE IT 0 TO 4? 1935 01:35:51,480 --> 01:35:53,200 I KNOW WHAT I ZERO IS BUT NOT A 1936 01:35:53,200 --> 01:35:59,880 TWO OR THREE. 1937 01:35:59,880 --> 01:36:01,720 AND LOOKING AT THE PLACES TO 1938 01:36:01,720 --> 01:36:12,240 IMPACT WITH OUR BACKGROUND WAS 1939 01:36:27,160 --> 01:36:29,200 TO LOOK AT CLINICAL END POINTS 1940 01:36:29,200 --> 01:36:31,440 AND DIAGNOSIS. 1941 01:36:31,440 --> 01:36:35,600 WE STARTED AS ALS IS A TRICKY 1942 01:36:35,600 --> 01:36:39,160 DISEASE IT TAKES 12 TO 18 MONTHS 1943 01:36:39,160 --> 01:36:40,400 TO GET DIAGNOSED. 1944 01:36:40,400 --> 01:36:41,800 IN MY HUSBAND'S CASE MORE THAN 1945 01:36:41,800 --> 01:36:44,160 TWO YEARS AND THE SURVIVAL 1946 01:36:44,160 --> 01:36:54,680 AVERAGE IS TWO TO FIVE YEARS. 1947 01:36:59,240 --> 01:37:05,200 THERE'S OPPOSING FACTORS IN WHEN 1948 01:37:05,200 --> 01:37:07,720 WE DIAGNOSE AND NOT HAVING 1949 01:37:07,720 --> 01:37:10,320 DEFINITIVE DIGITAL BIOMARKERS. 1950 01:37:10,320 --> 01:37:14,440 WE TEAMED UP WITH PEOPLE WHO ARE 1951 01:37:14,440 --> 01:37:16,520 DOMAIN EXPERTS AND MOVE WITH 1952 01:37:16,520 --> 01:37:18,040 THIS ON A DAY TO DAY BASIS. 1953 01:37:18,040 --> 01:37:21,240 IT'S NOT A BOARD WHERE WE TOUCH 1954 01:37:21,240 --> 01:37:27,360 BASE ONCE IN A WHILE AND THEY 1955 01:37:27,360 --> 01:37:31,360 WORK WITH US AND JAMES AND 1956 01:37:31,360 --> 01:37:33,200 AMAZING DIGITAL BIOMARKER 1957 01:37:33,200 --> 01:37:41,120 KNOWLEDGE FROM MGH AND A 1958 01:37:41,120 --> 01:37:46,040 NEUROLOGIST AT JOHNS HOPKINS AND 1959 01:37:46,040 --> 01:37:48,720 AN A.I. EXPERT AND MTH WITH A 1960 01:37:48,720 --> 01:37:50,440 DATA PLATFORM. 1961 01:37:50,440 --> 01:38:00,080 THESE ARE OUR CORE GROUP OF 1962 01:38:00,080 --> 01:38:05,240 ADVISORS AND WE STARTED OFF WITH 1963 01:38:05,240 --> 01:38:07,440 BUILD PATIENT COMMUNITY AND LIKE 1964 01:38:07,440 --> 01:38:09,040 WALTER SAID HOW DO WE GET THE 1965 01:38:09,040 --> 01:38:10,000 TRUST WITHIN THE PATIENT 1966 01:38:10,000 --> 01:38:14,320 COMMUNITY TO BECOME A RESEARCH 1967 01:38:14,320 --> 01:38:15,960 PARTNER AND THAT'S WHERE WE 1968 01:38:15,960 --> 01:38:17,600 EXPERIMENTED AND WERE SUCCESSFUL 1969 01:38:17,600 --> 01:38:21,000 IN BUILDING, PATIENTS ARE NOT 1970 01:38:21,000 --> 01:38:22,960 EXTERNAL ENTITY. 1971 01:38:22,960 --> 01:38:26,000 THEY NEED TO BE IN THE RESEARCH 1972 01:38:26,000 --> 01:38:27,760 THAT ARE RESEARCH PARTNERS AND 1973 01:38:27,760 --> 01:38:29,560 THEN DO DATA COLLECTION AND HAVE 1974 01:38:29,560 --> 01:38:35,560 A DATA SCIENCE TEAM WITH A.I. 1975 01:38:35,560 --> 01:38:35,840 PARTNERS. 1976 01:38:35,840 --> 01:38:37,920 WE DO DATA QUANTIFYING 1977 01:38:37,920 --> 01:38:41,240 PROGRESSION AND PREDICTING THE 1978 01:38:41,240 --> 01:38:48,560 DISEASE. 1979 01:38:48,560 --> 01:38:52,600 EVERYTHING ALS AS A DASHBOARD DO 1980 01:38:52,600 --> 01:38:53,280 PATIENT-MEDIATED DATA COLLECTION 1981 01:38:53,280 --> 01:38:55,720 AND STARTED WITH LOOKING AT 1982 01:38:55,720 --> 01:38:59,320 SPEECH AND VIDEO AND KICKED OFF 1983 01:38:59,320 --> 01:39:02,160 A PROJECT ON BREEDING COGNITION, 1984 01:39:02,160 --> 01:39:10,720 GROSS MOTOR SENSOR AND SPEECH. 1985 01:39:10,720 --> 01:39:12,800 IT'S ALL OPEN INNOVATION AND 1986 01:39:12,800 --> 01:39:13,200 SCIENCE. 1987 01:39:13,200 --> 01:39:19,160 THIS IS AN IRB APPROVED PROTOCOL 1988 01:39:19,160 --> 01:39:22,720 WE DO AND WE ENGAGE WITH 1989 01:39:22,720 --> 01:39:33,240 START-UPS WHO HELP WITH THE DATA 1990 01:39:40,920 --> 01:39:44,440 AND WE EMBED THESE AS 1991 01:39:44,440 --> 01:39:46,120 EXPERIMENTAL BIOMARKERS IN PHASE 1992 01:39:46,120 --> 01:39:50,920 1 TO 2 TRIALS AND GET IT TO WORK 1993 01:39:50,920 --> 01:39:52,440 DIRECTLY WITH FDA. 1994 01:39:52,440 --> 01:39:53,680 WE HAD A LOT OF CONVERSATIONS. 1995 01:39:53,680 --> 01:39:56,720 WE HAVE AN M.O.U. WITH CRITICAL 1996 01:39:56,720 --> 01:40:01,480 PATH INSTITUTE AND WORKING WITH 1997 01:40:01,480 --> 01:40:04,000 THE LAW FIRM TO TAKE OUR 1998 01:40:04,000 --> 01:40:05,480 FINDINGS AT GET THE FDA APPROVED 1999 01:40:05,480 --> 01:40:12,880 TO BE A DIGITAL BIOMARKER. 2000 01:40:12,880 --> 01:40:15,120 IT'S BRINGING STAKEHOLDERS 2001 01:40:15,120 --> 01:40:16,440 TOGETHER AND WHY THIS IS 2002 01:40:16,440 --> 01:40:17,760 IMPORTANT IS THAT THE WAY WE ARE 2003 01:40:17,760 --> 01:40:23,560 DOING THE OPEN INNOVATION IS 2004 01:40:23,560 --> 01:40:25,080 TRADITIONALLY THE RESEARCH IS 2005 01:40:25,080 --> 01:40:27,080 DONE FROM AN EXTERNAL 2006 01:40:27,080 --> 01:40:29,200 PERSPECTIVE AND STUDIES ARE DONE 2007 01:40:29,200 --> 01:40:32,040 WITH SMALL COHORTS AND SMALL 2008 01:40:32,040 --> 01:40:34,240 FINDINGS AND NOW WE'RE OPENING 2009 01:40:34,240 --> 01:40:41,280 IT UP TO MAKING IT AN OPEN DATA 2010 01:40:41,280 --> 01:40:45,200 PLATFORM ANALYZED BY MANY 2011 01:40:45,200 --> 01:40:47,560 RESEARCHERS AT THE SAME TIME AND 2012 01:40:47,560 --> 01:40:49,640 TOLD THE CURRENT MODEL IS YOU 2013 01:40:49,640 --> 01:40:51,360 BUILD EACH NEW STADIUM FOR EACH 2014 01:40:51,360 --> 01:40:57,080 GAME AND WHAT WE'RE TRYING TO DO 2015 01:40:57,080 --> 01:40:59,360 IS TRYING TO PLAY A SIMULTANEOUS 2016 01:40:59,360 --> 01:41:02,320 GAME IN THE SAME STADIUM BUILT. 2017 01:41:02,320 --> 01:41:04,480 JUST AS QUICK METRICS, OUR 2018 01:41:04,480 --> 01:41:05,560 PATIENT COMMUNITY HAS BEEN 2019 01:41:05,560 --> 01:41:08,440 GROWING. 2020 01:41:08,440 --> 01:41:09,640 WE HAVE OVER 5,000 PEOPLE WHO 2021 01:41:09,640 --> 01:41:11,640 ARE A CORE PART OF OUR 2022 01:41:11,640 --> 01:41:12,040 COMMUNITY. 2023 01:41:12,040 --> 01:41:14,880 BOTH PATIENTS AND THE CAREGIVERS 2024 01:41:14,880 --> 01:41:18,480 AND WE HOST EVENTS EVERY TWO 2025 01:41:18,480 --> 01:41:20,760 WEEKS WE CALL ALS TALK SERIES 2026 01:41:20,760 --> 01:41:22,520 AND BRING IN WHO'S-WHO AND THE 2027 01:41:22,520 --> 01:41:23,720 RESEARCHERS TO COME IN AND TALK 2028 01:41:23,720 --> 01:41:28,560 TO THE PATIENT COMMUNITY. 2029 01:41:28,560 --> 01:41:31,040 ALL OUR RESEARCH IS 100% REMOTE. 2030 01:41:31,040 --> 01:41:32,760 WE'RE SET UP AS A VIRTUAL GROUP 2031 01:41:32,760 --> 01:41:36,200 AND IT'S REALLY THE FEELING OF A 2032 01:41:36,200 --> 01:41:38,200 PATIENT FROM PATIENT'S LIVING 2033 01:41:38,200 --> 01:41:39,760 ROOM TO THE RESEARCHERS LIVING 2034 01:41:39,760 --> 01:41:42,200 ROOM ASKING ANY QUESTIONS. 2035 01:41:42,200 --> 01:41:52,920 THIS IS VERY WILDLY SUCCESS FFU 2036 01:41:55,400 --> 01:41:58,800 PROGRAM AND WE HAVE VISITORS WHO 2037 01:41:58,800 --> 01:42:01,200 HAVE CONSUMED 160 HOURS OF 2038 01:42:01,200 --> 01:42:09,200 CONTENT. 2039 01:42:09,200 --> 01:42:11,200 AND FOR THE PEOPLE LIVING WITH 2040 01:42:11,200 --> 01:42:13,200 ALSO TO BE PART OF THE RESEARCH. 2041 01:42:13,200 --> 01:42:16,280 AND WITH THAT WE RECRUIT FROM 2042 01:42:16,280 --> 01:42:18,360 SOCIAL MEDIA AND OUR COMMUNITY 2043 01:42:18,360 --> 01:42:21,240 AND RESEARCH AND THE FIRST WE 2044 01:42:21,240 --> 01:42:26,760 KICKED OFF WAS WITH 2045 01:42:26,760 --> 01:42:27,720 MODALITY.A.I. WE DID FACIAL 2046 01:42:27,720 --> 01:42:28,760 VIDEO AND SPEECH AND COGNITION 2047 01:42:28,760 --> 01:42:31,920 AND TELL YOU ABOUT THE METRICS 2048 01:42:31,920 --> 01:42:33,720 IN THE NEXT SLIDE. 2049 01:42:33,720 --> 01:42:35,720 THE SEARCH ENGINE INTERACTIONS 2050 01:42:35,720 --> 01:42:38,560 THAT ARE FINE MOTOR STUDY BY 2051 01:42:38,560 --> 01:42:43,600 MICRORESEARCH AND WE LOOKED AT 2052 01:42:43,600 --> 01:42:48,160 THE DATA WITH HOW THE FINGER IS 2053 01:42:48,160 --> 01:42:49,240 MOVING AND TYPING AND MOUSE 2054 01:42:49,240 --> 01:42:51,200 MOVEMENT AND SPELL CHECKER AND 2055 01:42:51,200 --> 01:42:54,400 LOOKED AT WHEN WOULD IMPACT ALS 2056 01:42:54,400 --> 01:42:57,120 PATIENTS IN CONTROLS AND THERE 2057 01:42:57,120 --> 01:42:59,040 WAS A CLEAR DISTINCTION FOR 2058 01:42:59,040 --> 01:43:00,320 PEOPLE WHO GOT DIAGNOSED WITH 2059 01:43:00,320 --> 01:43:02,040 ALS VERSUS CONTROLS. 2060 01:43:02,040 --> 01:43:05,000 THE NEXT STUDY WE JUST KICKED 2061 01:43:05,000 --> 01:43:06,920 OFF WAS WITH A START UP WHERE 2062 01:43:06,920 --> 01:43:10,480 THE SENSORS GO TO THE SHOES AND 2063 01:43:10,480 --> 01:43:14,600 WE'LL BE ABLE TO LOOK AT GAIT, 2064 01:43:14,600 --> 01:43:16,160 STRIDE, BALANCE LONG WITH 2065 01:43:16,160 --> 01:43:18,200 BREATHING WITH ANOTHER COMPANY. 2066 01:43:18,200 --> 01:43:21,240 OUR GOAL IS TO AUTOMATE THE FOUR 2067 01:43:21,240 --> 01:43:26,560 COMPONENTS OF THE ALS SCORE AND 2068 01:43:26,560 --> 01:43:28,000 WE'VE BEEN GOING AT IT AND 2069 01:43:28,000 --> 01:43:28,640 ATTEMPTED TO DO ALL OF THEM THIS 2070 01:43:28,640 --> 01:43:34,240 YEAR. 2071 01:43:34,240 --> 01:43:38,240 SO THE NUMBERS IN 14 MONTHS WE 2072 01:43:38,240 --> 01:43:41,160 WERE ABLE FOR OUR FIRST STUDY WE 2073 01:43:41,160 --> 01:43:43,520 GOT OVER 1,000 HOURS OF DATA. 2074 01:43:43,520 --> 01:43:46,160 THIS IS THE PATIENTS AND 2075 01:43:46,160 --> 01:43:47,560 PARTICIPANTS WOULD SPEND ABOUT 2076 01:43:47,560 --> 01:43:52,920 10 MINUTES EVERY WEEK AND THIS 2077 01:43:52,920 --> 01:43:56,880 WAS DIFFERENT QUESTIONS AND THE 2078 01:43:56,880 --> 01:43:59,600 PARTICIPANTS WOULD RESPONSE AND 2079 01:43:59,600 --> 01:44:03,040 THIS WAS FOR SPEECH COLLECTION 2080 01:44:03,040 --> 01:44:04,760 AND WE COVERED GEOGRAPHY 2081 01:44:04,760 --> 01:44:06,720 DISTRIBUTION EXCEPT MONTANA WAS 2082 01:44:06,720 --> 01:44:10,120 THE LAST STATE HARD TO GET AND 2083 01:44:10,120 --> 01:44:11,520 WE GOT ABOUT 750 PARTICIPANTS 2084 01:44:11,520 --> 01:44:15,640 WHO CONSENTED IN THE 14 MONTHS 2085 01:44:15,640 --> 01:44:16,680 TO BE IN OUR STUDY. 2086 01:44:16,680 --> 01:44:18,960 ONE THING WE TALKED ABOUT IS 2087 01:44:18,960 --> 01:44:20,440 ETHNIC DIVERSITY. 2088 01:44:20,440 --> 01:44:21,800 THIS IS VERY IMPORTANT TO US. 2089 01:44:21,800 --> 01:44:25,120 WE LOOKED AT THE U.S. POPULATION 2090 01:44:25,120 --> 01:44:31,960 AND OUR STUDY AND WE HAVE 2091 01:44:31,960 --> 01:44:32,800 AMERICAN INDIAN POPULATION OR 2092 01:44:32,800 --> 01:44:34,160 NATIVE HAWAIIAN POPULATION AND 2093 01:44:34,160 --> 01:44:36,320 HAVE TO DO BETTER IN SOME OTHER 2094 01:44:36,320 --> 01:44:39,240 CATEGORIES BUT WE DO PAY CLOSE 2095 01:44:39,240 --> 01:44:41,560 ATTENTION TO THE ETHNIC 2096 01:44:41,560 --> 01:44:42,200 DIVERSITY AS WELL AND 2097 01:44:42,200 --> 01:44:44,320 SUBPOPULATION DIVERSITY AS YOU 2098 01:44:44,320 --> 01:44:46,080 CAN SEE. 2099 01:44:46,080 --> 01:44:49,240 WE ARE TRACKING WELL WITH ASIAN 2100 01:44:49,240 --> 01:44:53,200 SUBPOPULATION DIVERSITY. 2101 01:44:53,200 --> 01:45:00,120 OUR GOAL IS TO DO THE MULTI-MODE 2102 01:45:00,120 --> 01:45:02,400 DIGITAL BIOMEDICAL AND GO 2103 01:45:02,400 --> 01:45:06,440 THROUGH FINE MOTOR, GROSS MOTOR 2104 01:45:06,440 --> 01:45:10,400 AND RESPIRATORY AND THE TIME 2105 01:45:10,400 --> 01:45:11,680 LINE BY MID NEXT YEAR WE'D HAVE 2106 01:45:11,680 --> 01:45:13,680 DATA FROM ALL THE BIG FOUR 2107 01:45:13,680 --> 01:45:13,960 CATEGORIES. 2108 01:45:13,960 --> 01:45:17,080 WE DO HAVE SOME PUBLICATIONS YOU 2109 01:45:17,080 --> 01:45:19,760 CAN GO TO OUR WEBSITE EVERYTHING 2110 01:45:19,760 --> 01:45:23,360 ALS DOT ORG AND LOOK AT THE 2111 01:45:23,360 --> 01:45:24,360 PUBLICATION. 2112 01:45:24,360 --> 01:45:26,160 WE'RE BRINGING IN A LOT OF 2113 01:45:26,160 --> 01:45:27,360 PHARMA COMPANIES TO WORK WITH US 2114 01:45:27,360 --> 01:45:30,360 AND SOME STAKEHOLDERS WHY 2115 01:45:30,360 --> 01:45:31,000 THEY'RE PARTNERING WITH US IS 2116 01:45:31,000 --> 01:45:33,200 BECAUSE THEY WANT TO SEE THE 2117 01:45:33,200 --> 01:45:34,680 SPEED AND EXECUTION. 2118 01:45:34,680 --> 01:45:36,320 THIS IS A PLATFORM THAT WE ARE 2119 01:45:36,320 --> 01:45:42,680 BUILDING WITH ALS AS OUR FIRST 2120 01:45:42,680 --> 01:45:46,080 FOCUS BUT IT'S APPLICABLE FOR 2121 01:45:46,080 --> 01:45:48,640 MANY OTHER DISEASES AND WE WANT 2122 01:45:48,640 --> 01:45:49,800 TO BE AN OPEN INNOVATION 2123 01:45:49,800 --> 01:45:50,640 PLATFORM AND MAKE IT AVAILABLE 2124 01:45:50,640 --> 01:45:53,200 FOR ALL OTHER DISEASES. 2125 01:45:53,200 --> 01:46:03,560 THANK YOU VERY MUCH. 2126 01:46:04,520 --> 01:46:06,080 >> THANK YOU VERY MUCH FOR 2127 01:46:06,080 --> 01:46:07,440 SHARING YOUR EXPERTISE AND YOUR 2128 01:46:07,440 --> 01:46:10,880 LEARNINGS WITH THE ENTIRE 2129 01:46:10,880 --> 01:46:13,640 NEUROLOGICAL COMMUNITY. 2130 01:46:13,640 --> 01:46:14,600 YOU'LL HAVE TO EXPRESS OUR 2131 01:46:14,600 --> 01:46:15,600 APPRECIATION TO YOUR FATHER FOR 2132 01:46:15,600 --> 01:46:17,080 ASKING THAT IMPORTANT QUESTION. 2133 01:46:17,080 --> 01:46:18,440 WE HAVE A QUESTION AS WE BRING 2134 01:46:18,440 --> 01:46:24,720 UP THE REST OF OUR PANEL I THINK 2135 01:46:24,720 --> 01:46:34,680 WE'LL GIVE TO YOU. 2136 01:46:34,680 --> 01:46:36,600 IF YOU'RE WORKING PREDOMINANTLY 2137 01:46:36,600 --> 01:46:39,000 ONLINE TO COLLECT DATA WITH A 2138 01:46:39,000 --> 01:46:39,840 WEBSITE AND SOCIAL MEDIA AS YOUR 2139 01:46:39,840 --> 01:46:44,200 FORMS OF OUTREACH, HOW CAN YOU 2140 01:46:44,200 --> 01:46:45,040 REACH A REPRESENTATIVE 2141 01:46:45,040 --> 01:46:45,320 POPULATION. 2142 01:46:45,320 --> 01:46:53,520 DO YOU HAVE THOUGHTS ON THAT? 2143 01:46:53,520 --> 01:46:55,560 >> THIS IS THE BEST WAY. 2144 01:46:55,560 --> 01:46:57,200 PATIENT ADVOCACY GROUPS HAVE TO 2145 01:46:57,200 --> 01:46:58,240 GET MORE INVOLVED IN RESEARCH 2146 01:46:58,240 --> 01:47:02,800 LIKE THIS BECAUSE WE WERE ABLE 2147 01:47:02,800 --> 01:47:04,160 TO BRING IN DIVERSE POPULATION 2148 01:47:04,160 --> 01:47:06,960 BECAUSE OF THE WHOLE SOCIAL 2149 01:47:06,960 --> 01:47:10,400 MEDIA AND WEBSITE RECRUITING 2150 01:47:10,400 --> 01:47:11,840 BECAUSE WHEN TRADITIONALLY THE 2151 01:47:11,840 --> 01:47:13,440 RESEARCH IS DONE BY 2152 01:47:13,440 --> 01:47:15,400 INSTITUTIONS, YOU REALLY GET 2153 01:47:15,400 --> 01:47:16,920 ONLY THE POPULATION AROUND THAT 2154 01:47:16,920 --> 01:47:18,560 INSTITUTION WHO GO TO THAT 2155 01:47:18,560 --> 01:47:21,560 INSTITUTION AND NOW WE'RE ABLE 2156 01:47:21,560 --> 01:47:24,200 TO FIND AND ONE IS REMOTE AND 2157 01:47:24,200 --> 01:47:25,520 SECOND IS BECAUSE PEOPLE IN THE 2158 01:47:25,520 --> 01:47:27,880 REMOTE PLACES, WANT TO BE PART 2159 01:47:27,880 --> 01:47:29,400 OF THE COMMUNITIES SO THEY DO 2160 01:47:29,400 --> 01:47:34,320 ACTIVELY ENGAGE IN SOCIAL MEDIA 2161 01:47:34,320 --> 01:47:36,760 AND SOMETIMES WE ARE A B TO C 2162 01:47:36,760 --> 01:47:38,480 COMPANY WHERE WE SEEK OUT 2163 01:47:38,480 --> 01:47:40,160 COMMUNITIES WHERE THEY ARE AND 2164 01:47:40,160 --> 01:47:44,160 BRING THEM IN AND USE A LOT OF 2165 01:47:44,160 --> 01:47:45,200 APPROXIMATE TO ATTRACT DIFFERENT 2166 01:47:45,200 --> 01:47:47,200 COMMUNITY WE NEED TO ENGAGE IN 2167 01:47:47,200 --> 01:47:48,440 OUR RESEARCH. 2168 01:47:48,440 --> 01:47:49,760 I HOPE THAT ANSWERED THE 2169 01:47:49,760 --> 01:47:50,040 QUESTION. 2170 01:47:50,040 --> 01:47:51,640 >> AND YOU'RE ABLE TOE TRACK 2171 01:47:51,640 --> 01:47:53,560 THAT AS WELL. 2172 01:47:53,560 --> 01:47:55,200 YOU KNOW YOU'RE REACHING ALL 2173 01:47:55,200 --> 01:47:57,200 POPULATIONS FOR THE ALS 2174 01:47:57,200 --> 01:48:07,360 COMMUNITY? 2175 01:48:08,360 --> 01:48:09,760 AND WE HAVE TO FIND WHERE ARE 2176 01:48:09,760 --> 01:48:14,760 THE PEOPLE. 2177 01:48:14,760 --> 01:48:17,600 CERTAIN COMMUNITIES WERE NOT IN 2178 01:48:17,600 --> 01:48:20,240 THE MAINSTREAM LIKE MY HUSBAND 2179 01:48:20,240 --> 01:48:21,600 WOULDN'T BE IN FACEBOOK. 2180 01:48:21,600 --> 01:48:24,280 WE ARE TRYING TO MAKE SURE WE 2181 01:48:24,280 --> 01:48:28,760 CAN REACH AND DO MORE PR WHY THE 2182 01:48:28,760 --> 01:48:34,120 STUDY'S IMPORTANT AND WE'RE ON 2183 01:48:34,120 --> 01:48:36,440 TVs AND SOME NEWS CHANNELS AND 2184 01:48:36,440 --> 01:48:37,200 COMMUNITIES. 2185 01:48:37,200 --> 01:48:42,640 WE TAKE THE ALS PATIENTS RE-MOTE 2186 01:48:42,640 --> 01:48:45,200 COMMUNITIES AND HIGHLIGHT THEIR 2187 01:48:45,200 --> 01:48:48,200 STORY WITH OUR 2188 01:48:48,200 --> 01:48:49,640 PR EFFORT. 2189 01:48:49,640 --> 01:48:53,840 WE HAD PEOPLE WHO CAME TO OUR 2190 01:48:53,840 --> 01:48:59,400 WEBSITE AND WANT TO BE INVOLVED. 2191 01:48:59,400 --> 01:49:01,200 >> HAVING THE PATIENT 2192 01:49:01,200 --> 01:49:05,200 REPRESENTATIVE RECORD THE ENTIRE 2193 01:49:05,200 --> 01:49:06,240 RESEARCH INVOLVEMENT FROM HER 2194 01:49:06,240 --> 01:49:08,120 PERSPECTIVE I THINK WAS 2195 01:49:08,120 --> 01:49:09,200 BRILLIANT AND HOPEFULLY 2196 01:49:09,200 --> 01:49:10,680 CONTRIBUTED SIGNIFICANTLY TO THE 2197 01:49:10,680 --> 01:49:15,280 EASE OF RECRUITMENT. 2198 01:49:15,280 --> 01:49:15,600 >> THANK YOU. 2199 01:49:15,600 --> 01:49:17,280 IT'S SOMETHING I CONTINUE TO DO 2200 01:49:17,280 --> 01:49:21,200 MOVING FORWARD. 2201 01:49:21,200 --> 01:49:23,600 I AGREE THAT SOMETIMES NO MATTER 2202 01:49:23,600 --> 01:49:26,320 HOW HARD A RESEARCHER OR 2203 01:49:26,320 --> 01:49:27,920 CLINICIAN TRIES TO EXPLAIN 2204 01:49:27,920 --> 01:49:30,600 THINGS IN PATIENT-FRIENDLY TERMS 2205 01:49:30,600 --> 01:49:31,640 WHO DOES BETTER THAN THE PATIENT 2206 01:49:31,640 --> 01:49:41,280 THEMSELVES. 2207 01:49:41,280 --> 01:49:45,920 >> WE HAVE A QUESTION TO THE 2208 01:49:45,920 --> 01:49:49,160 PANEL IF THEY THINK VOLUNTEER 2209 01:49:49,160 --> 01:49:50,760 PARTICIPATION CAN MAKE A 2210 01:49:50,760 --> 01:49:53,200 DIFFERENCE IN THE CLIMATE OF 2211 01:49:53,200 --> 01:49:55,040 PATIENT ENGAGEMENT. 2212 01:49:55,040 --> 01:49:56,640 >> I AGREE. 2213 01:49:56,640 --> 01:49:57,640 DESPITE THE FACT I'M USING 2214 01:49:57,640 --> 01:50:01,200 PATIENT ENGAGEMENT, I DON'T USE 2215 01:50:01,200 --> 01:50:04,800 THE WORD PATIENT IN THE PAPERS I 2216 01:50:04,800 --> 01:50:09,240 WRITE OR WHAT I REFER TO AS 2217 01:50:09,240 --> 01:50:10,400 PATIENTS SO PATIENT SUBJECT IS 2218 01:50:10,400 --> 01:50:15,200 NOT THE BEST TERM BUT I RERCH TO 2219 01:50:15,200 --> 01:50:16,920 OUR PATIENT PARTNERS TO WHAT 2220 01:50:16,920 --> 01:50:17,840 THEY THINK ABOUT THE TERMINOLOGY 2221 01:50:17,840 --> 01:50:28,280 AND WHAT WOULD BE BETTER. 2222 01:50:50,040 --> 01:50:52,720 >> WE TRIED TO REACH OUT TO 2223 01:50:52,720 --> 01:50:55,600 PEOPLE WITH ALS IT'S MORE HOW WE 2224 01:50:55,600 --> 01:50:56,960 TREAT THEM. 2225 01:50:56,960 --> 01:50:59,920 FOR MY, MY HUSBAND WE WERE SMART 2226 01:50:59,920 --> 01:51:02,040 PEOPLE AND HEARD FROM 2227 01:51:02,040 --> 01:51:03,000 NEUROLOGISTS OVER AND OVER AGAIN 2228 01:51:03,000 --> 01:51:04,440 I'VE NEVER SEEN SO MUCH DATA 2229 01:51:04,440 --> 01:51:06,560 BEING COLLECTED WE HAD A DATA 2230 01:51:06,560 --> 01:51:08,840 SCIENCE TEAM AND WE LITERALLY 2231 01:51:08,840 --> 01:51:10,120 HAVE SO MUCH ABOUT HIS DATA 2232 01:51:10,120 --> 01:51:14,560 BECAUSE WHEN THE NEUROLOGIST 2233 01:51:14,560 --> 01:51:16,200 COME BACK AFTER EIGHT MONTHS I'M 2234 01:51:16,200 --> 01:51:17,600 LIKE WHAT WILL HAPPEN IN EIGHT 2235 01:51:17,600 --> 01:51:19,120 MONTHS. 2236 01:51:19,120 --> 01:51:22,120 I CAN TELL YOU IN WEEKS HOW MANY 2237 01:51:22,120 --> 01:51:24,280 MUSCLES ARE DEGRADING WITH 2238 01:51:24,280 --> 01:51:25,560 DIFFERENT SENSORS AND I DON'T 2239 01:51:25,560 --> 01:51:27,360 NEED TO COME TO THE FACILITY FOR 2240 01:51:27,360 --> 01:51:29,600 YOU TO MOVE HIS ARMS AND LEGS. 2241 01:51:29,600 --> 01:51:31,360 WE COLLECTED A LOT OF THE DATA 2242 01:51:31,360 --> 01:51:33,880 BUT WE WERE STILL NOT INTEGRATED 2243 01:51:33,880 --> 01:51:35,600 BECAUSE THE SYSTEM WAS NOT SET 2244 01:51:35,600 --> 01:51:40,440 UP TO BE INTEGRATED. 2245 01:51:40,440 --> 01:51:43,040 AND WE SET UP FEEDBACK MEETINGS 2246 01:51:43,040 --> 01:51:48,440 AND KICKED OFF A STUDY WITH 2247 01:51:48,440 --> 01:51:50,920 LARGE ORGANIZATIONS AND WE HAVE 2248 01:51:50,920 --> 01:51:53,200 ABOUT SIX SUPER USERS TO COME 2249 01:51:53,200 --> 01:51:55,960 IN, PATIENTS OR PEOPLE LIVING 2250 01:51:55,960 --> 01:51:57,200 WITH ALS TO GIVE FEEDBACK. 2251 01:51:57,200 --> 01:51:58,920 WE CALL IT A BETA LAUNCH. 2252 01:51:58,920 --> 01:52:01,880 WE'RE BRINGING IN ALL THE 2253 01:52:01,880 --> 01:52:03,440 SOFTWARE TERMS. 2254 01:52:03,440 --> 01:52:05,960 IT'S A BETA LAUNCH AND NEED 2255 01:52:05,960 --> 01:52:08,640 FEEDBACK FROM PEOPLE SAYING HOW 2256 01:52:08,640 --> 01:52:10,840 IS IT, IS THERE SOMETHING WE 2257 01:52:10,840 --> 01:52:12,320 NEED TO SPEAK IN THE PROTOCOL 2258 01:52:12,320 --> 01:52:14,240 AND ASKING THEM TO GIVE FEEDBACK 2259 01:52:14,240 --> 01:52:24,600 ON HOW IT WOULD BE. 2260 01:52:26,880 --> 01:52:27,280 AND WE WERE NOT REALLY 2261 01:52:27,280 --> 01:52:37,480 LEVERAGED. 2262 01:52:48,640 --> 01:52:49,920 >> WHEN SO MUCH CONFIDENTIALITY 2263 01:52:49,920 --> 01:52:53,520 IS DEIDENTIFIED IN PAPERS AND 2264 01:52:53,520 --> 01:53:04,080 KEEPING THAT FOCUS CENTRALIZED. 2265 01:53:04,080 --> 01:53:06,840 THERE'S AN IMPORTANT INCENTIVE 2266 01:53:06,840 --> 01:53:07,560 WORKING WITH DIFFERENT PEOPLES 2267 01:53:07,560 --> 01:53:09,040 AND BACKGROUNDS. 2268 01:53:09,040 --> 01:53:15,240 IT'S EASY TO LOSE SIGHT. 2269 01:53:15,240 --> 01:53:17,040 >> THAT'S WHERE WE HAVE A CLEAR 2270 01:53:17,040 --> 01:53:18,280 DISTINCTION OF IRB AND IT GOES 2271 01:53:18,280 --> 01:53:21,800 TO DE-IDENTIFIED. 2272 01:53:21,800 --> 01:53:27,280 IT'S LIKE PEOPLE ASKING ME WHAT 2273 01:53:27,280 --> 01:53:34,480 SHOULD I DO? 2274 01:53:34,480 --> 01:53:35,880 WE RECOGNIZED THE FRICTIONS AND 2275 01:53:35,880 --> 01:53:46,360 TRIED TO REMOVE THE FRICTION. 2276 01:53:53,800 --> 01:53:57,240 >> WE NEED A MODERATOR. 2277 01:53:57,240 --> 01:53:58,640 >> I HAVE QUESTIONS ARE YOU 2278 01:53:58,640 --> 01:54:01,200 INCLUDING PATIENTS WITH LIMITED 2279 01:54:01,200 --> 01:54:04,600 ENGLISH PROFICIENCY? 2280 01:54:04,600 --> 01:54:05,880 YES, FOR ENGLISH AND UNITED 2281 01:54:05,880 --> 01:54:06,120 STATES. 2282 01:54:06,120 --> 01:54:07,560 WE'RE A YOUNG ORGANIZATION. 2283 01:54:07,560 --> 01:54:09,120 WE STARTED YEARS AGO AND WE'RE 2284 01:54:09,120 --> 01:54:11,440 NOW THINKING ABOUT SPANISH 2285 01:54:11,440 --> 01:54:13,920 SPEAKING AND ALSO EXPANDING SO 2286 01:54:13,920 --> 01:54:24,200 IT'S IN THE WORKS. 2287 01:54:31,840 --> 01:54:34,360 >> I MENTIONED WE WERE USING THE 2288 01:54:34,360 --> 01:54:36,920 TERM MEDICATION OVERUSE HEADACHE 2289 01:54:36,920 --> 01:54:39,960 AND THIS IS THE OFFICIAL TERM. 2290 01:54:39,960 --> 01:54:40,880 THERE'S PUBLISHED DIAGNOSTIC 2291 01:54:40,880 --> 01:54:46,000 CRITERIA AND THAT'S WHAT IT'S 2292 01:54:46,000 --> 01:54:48,400 CALLED. 2293 01:54:48,400 --> 01:54:51,800 AND IT DIDN'T SIT WELL BECAUSE 2294 01:54:51,800 --> 01:54:54,480 FOR SOME IT HAS THE CONNOTATION 2295 01:54:54,480 --> 01:54:55,280 YOU'RE BLAMING THE PATIENT FOR 2296 01:54:55,280 --> 01:54:57,080 THEIR OWN CONDITION. 2297 01:54:57,080 --> 01:54:59,400 IT REFERS TO THE VAST MAJORITY 2298 01:54:59,400 --> 01:55:01,680 OF PEOPLE IF THEY'RE HAVING A 2299 01:55:01,680 --> 01:55:03,720 MIGRAINE THEY'LL WANT TO TREAT 2300 01:55:03,720 --> 01:55:14,200 IT TO REDUCE THEIR SYMPTOMS. 2301 01:55:16,480 --> 01:55:20,840 AND USING MEDICATIONS CAN RESULT 2302 01:55:20,840 --> 01:55:26,680 IN CAUSING MORE FREQUENT 2303 01:55:26,680 --> 01:55:26,960 HEADACHES. 2304 01:55:26,960 --> 01:55:30,080 THERE'S BEEN SEVERAL YEARS 2305 01:55:30,080 --> 01:55:31,840 DEBATE AND TERMINOLOGY TO PUT 2306 01:55:31,840 --> 01:55:37,080 LESS BLAME ON THE PATIENT. 2307 01:55:37,080 --> 01:55:39,560 WE WERE STUCK BECAUSE AND THE 2308 01:55:39,560 --> 01:55:41,840 WORD MEDICATION OVERUSE IN IT 2309 01:55:41,840 --> 01:55:46,880 AND THERE WAS AN ATTORNEY 2310 01:55:46,880 --> 01:55:51,400 GENERAL TRIAL. 2311 01:55:51,400 --> 01:55:54,040 WE MADE A POINT OF ASKING 2312 01:55:54,040 --> 01:55:54,960 INVESTIGATORS AND COORDINATORS 2313 01:55:54,960 --> 01:55:57,160 TO TAKE A MINUTE OR 30 SECONDS 2314 01:55:57,160 --> 01:55:58,960 AND WALK THE POTENTIAL 2315 01:55:58,960 --> 01:55:59,640 PARTICIPANTS THROUGH THE 2316 01:55:59,640 --> 01:56:05,600 TERMINOLOGY AND WHY WE'RE DOING 2317 01:56:05,600 --> 01:56:08,920 IT. 2318 01:56:08,920 --> 01:56:11,960 MAKING SOMEONE UNDERSTAND HOW 2319 01:56:11,960 --> 01:56:15,600 YOU ARE USING THE TERMINOLOGY 2320 01:56:15,600 --> 01:56:17,200 PROBABLY ALL YOU CAN DO UNTIL 2321 01:56:17,200 --> 01:56:27,520 YOU ADD IT TOGETHER. 2322 01:56:42,120 --> 01:56:45,400 I HOPE THIS DOESN'T SOUND 2323 01:56:45,400 --> 01:56:46,840 CONTROVERSIAL BUT I SPEND TIME 2324 01:56:46,840 --> 01:56:51,360 WITH FAMILIES AND PATIENTS I 2325 01:56:51,360 --> 01:56:53,680 WORK WITH AND IT TAKES AWAY FROM 2326 01:56:53,680 --> 01:57:04,160 THE BIGGER ISSUE. 2327 01:57:04,160 --> 01:57:07,360 AND THESE ARE CREATING SO MANY 2328 01:57:07,360 --> 01:57:07,840 CONTROVERSIES WHEN THEY 2329 01:57:07,840 --> 01:57:11,600 SHOULDN'T. 2330 01:57:11,600 --> 01:57:22,080 NO ONE IS QUESTIONS THE -- WE 2331 01:57:32,960 --> 01:57:34,920 NEED TO LOOK AT THE PATIENT 2332 01:57:34,920 --> 01:57:35,560 EXPERIENCE. 2333 01:57:35,560 --> 01:57:37,280 >> AND THE WORD SUBJECT, I'M NOT 2334 01:57:37,280 --> 01:57:47,640 A BIG FAN OF SUBJECTS. 2335 01:57:52,240 --> 01:58:01,080 >> MY APOLOGIES. 2336 01:58:01,080 --> 01:58:07,880 MY SCREEN WENT OUT. 2337 01:58:07,880 --> 01:58:09,360 WOULD YOU TALK ABOUT WORKING 2338 01:58:09,360 --> 01:58:11,280 WITH FAMILIES AN CHILDREN 2339 01:58:11,280 --> 01:58:12,920 BECAUSE THEY'LL BENEFIT FROM THE 2340 01:58:12,920 --> 01:58:13,240 PROGRAM. 2341 01:58:13,240 --> 01:58:15,720 YOU CAN'T GO TO THEM DIRECTLY. 2342 01:58:15,720 --> 01:58:17,200 CAN YOU TALK ABOUT THAT? 2343 01:58:17,200 --> 01:58:25,200 YOU HAD QUESTIONS AS WELL. 2344 01:58:25,200 --> 01:58:28,360 >> I WORK WITH CHILDREN AND 2345 01:58:28,360 --> 01:58:35,600 ADULTS TO HAVE THE CAPACITY TO 2346 01:58:35,600 --> 01:58:37,960 CONS 2347 01:58:37,960 --> 01:58:43,920 CONSENT I THINK FAMILIES ARE 2348 01:58:43,920 --> 01:58:50,600 CENTRAL TO THE CARE. 2349 01:58:50,600 --> 01:58:54,760 AND ANYONE WHO HAS A CHRONIC 2350 01:58:54,760 --> 01:59:01,120 CONDITION REQUIRES THE FAMILY 2351 01:59:01,120 --> 01:59:01,400 STRONGLY. 2352 01:59:01,400 --> 01:59:07,920 THEY'RE PART OF THIS WHEN YOU'RE 2353 01:59:07,920 --> 01:59:11,040 WORKING WITH THE COMMITTEE 2354 01:59:11,040 --> 01:59:15,360 THAT'S WHEN YOU THINK CHILDREN 2355 01:59:15,360 --> 01:59:25,920 CAN PRESENT WE LOOKED AT THINGS 2356 01:59:29,200 --> 01:59:34,680 THAT MAY BE COMPLICATED TO 2357 01:59:34,680 --> 01:59:45,160 UNDERSTAND BUT WE REACH THE 2358 01:59:47,680 --> 01:59:52,200 FAMILIES AND WITH THE FAMILIES 2359 01:59:52,200 --> 02:00:02,360 IN PERU THE OLDER ADOLESCENTS WE 2360 02:00:02,360 --> 02:00:05,520 HAD A COUPLE OF STUDENTS THAT 2361 02:00:05,520 --> 02:00:16,080 WERE HELPING ORGANIZE THE STUDY. 2362 02:00:17,720 --> 02:00:20,960 >> I WANT TO SAY IN SO MANY 2363 02:00:20,960 --> 02:00:23,600 COMMUNITIES OF COLOR WE LIVE 2364 02:00:23,600 --> 02:00:24,840 INTERDEPENDENTLY AND MAY BE 2365 02:00:24,840 --> 02:00:25,640 SANDWICHED BETWEEN TAKING CARE 2366 02:00:25,640 --> 02:00:32,880 OF OURSELVES, OUR CHILDREN AND 2367 02:00:32,880 --> 02:00:36,240 ELDER AUNT OR PARENT. 2368 02:00:36,240 --> 02:00:38,680 SOMETIMES WHEN WE TALK ABOUT 2369 02:00:38,680 --> 02:00:40,800 RESEARCH AND EVEN IN CLINIC 2370 02:00:40,800 --> 02:00:43,560 SETTINGS WHEN YOU GO TO THE 2371 02:00:43,560 --> 02:00:45,760 DOCTOR'S OFFICE AND HAVE STAFF 2372 02:00:45,760 --> 02:00:48,120 SAY, OH, YOU BROUGHT THE WHOLE 2373 02:00:48,120 --> 02:00:48,520 FAMILY. 2374 02:00:48,520 --> 02:00:50,200 THERE'S A SUBTEXT THERE THAT'S 2375 02:00:50,200 --> 02:00:52,480 NOT SO WELCOMING. 2376 02:00:52,480 --> 02:00:55,960 WE NEED TO BE MINDFUL OF THINGS 2377 02:00:55,960 --> 02:00:59,600 LIKE THAT ARE OFF PUTTING MAKING 2378 02:00:59,600 --> 02:01:03,600 FAMILIES AND PATIENTS NOT FEEL 2379 02:01:03,600 --> 02:01:06,600 INCLUDED BUT CONTRIBUTE TO 2380 02:01:06,600 --> 02:01:08,200 HEALTH CARE DISPARITIES. 2381 02:01:08,200 --> 02:01:18,720 I WANTED TO SHARE THAT QUICKLY. 2382 02:01:20,080 --> 02:01:25,880 >> WE STARTED IN MAY OF 2020 AND 2383 02:01:25,880 --> 02:01:27,240 THE PROJECT WAS THE FIRST 2384 02:01:27,240 --> 02:01:28,600 RESEARCH TO MARCH 2020 AND I 2385 02:01:28,600 --> 02:01:31,040 DON'T KNOW WHAT A PRE-COVID 2386 02:01:31,040 --> 02:01:33,320 WORLD LOOKED LIKE BUT WE'RE THE 2387 02:01:33,320 --> 02:01:39,000 POST-COVID. 2388 02:01:39,000 --> 02:01:43,000 MOST PEOPLE HAD AN iPAD OR 4G OR 2389 02:01:43,000 --> 02:01:45,640 3G IN THEIR PHONE. 2390 02:01:45,640 --> 02:01:47,560 WE DON'T REQUIRE A LOT OF 2391 02:01:47,560 --> 02:01:47,840 BANDWIDTH. 2392 02:01:47,840 --> 02:01:49,480 IT'S ALL THEY NEED IS A PHONE OR 2393 02:01:49,480 --> 02:01:57,000 iPAD. 2394 02:01:57,000 --> 02:01:58,640 AND WE KNOW WITH ALS PATIENTS IS 2395 02:01:58,640 --> 02:02:01,920 MORE THAN 50% OF THE PEOPLE LIVE 2396 02:02:01,920 --> 02:02:05,600 50 TO 75 MILES FROM THEIR 2397 02:02:05,600 --> 02:02:06,120 NEUROLOGY CENTER. 2398 02:02:06,120 --> 02:02:08,000 ASKING THEM TO COME TO THE 2399 02:02:08,000 --> 02:02:10,760 CENTER TO DO THE STUDY, THAT IS 2400 02:02:10,760 --> 02:02:12,200 NOT A VERY GOOD WAY OF 2401 02:02:12,200 --> 02:02:18,040 COLLECTING DATA OR TRYING TO DO 2402 02:02:18,040 --> 02:02:21,920 THIS RESEARCH AND SECOND LY 2403 02:02:21,920 --> 02:02:25,080 BECAUSE OF THE DETERIORATION IN 2404 02:02:25,080 --> 02:02:26,080 ALS PATIENTS THERE'S A LOT OF 2405 02:02:26,080 --> 02:02:29,240 FALLOUT AND WE WERE ABLE TO 2406 02:02:29,240 --> 02:02:33,200 RETAIN A LOT OF THE PEOPLE 2407 02:02:33,200 --> 02:02:35,840 BECAUSE PEOPLE COULD PARTICIPATE 2408 02:02:35,840 --> 02:02:39,160 REMOTELY AND WANTED TO MAKE SURE 2409 02:02:39,160 --> 02:02:41,440 WE HAVE BANDWIDTH AND USABLE BY 2410 02:02:41,440 --> 02:02:43,600 PEOPLE WHO HAVE LIMITED WI-FI 2411 02:02:43,600 --> 02:02:43,960 NETWORKS. 2412 02:02:43,960 --> 02:02:45,200 IT DOESN'T ALWAYS HAVE TO BE 2413 02:02:45,200 --> 02:02:47,360 CONNECTED AND THINGS LIKE THAT. 2414 02:02:47,360 --> 02:02:54,640 WE DO PAY A LOT OF ATTENTION TO 2415 02:02:54,640 --> 02:02:56,880 THOSE DETAILS. 2416 02:02:56,880 --> 02:02:58,520 I MOST PEOPLE SHOULD HAVE A 4G 2417 02:02:58,520 --> 02:03:08,840 OR 3G CONNECTION. 2418 02:03:34,960 --> 02:03:40,400 >> ONE OF THE SPACES WE TALK 2419 02:03:40,400 --> 02:03:45,000 ABOUT IN THE GOVERNMENT ARE 2420 02:03:45,000 --> 02:03:46,360 ABOUT EDUCATING US AND BEING 2421 02:03:46,360 --> 02:03:48,400 RESPECTFUL TO THE PEOPLE 2422 02:03:48,400 --> 02:03:50,160 AFFECTED BY THE DIFFERENT 2423 02:03:50,160 --> 02:03:52,800 NEUROLOGICAL DISORDERS AND 2424 02:03:52,800 --> 02:03:57,200 HELPING OUR RESEARCH CLINICIANS 2425 02:03:57,200 --> 02:03:57,640 UNDERSTAND THAT TOO. 2426 02:03:57,640 --> 02:03:59,640 AND TRYING TO CONNECT DOTS IN 2427 02:03:59,640 --> 02:04:00,760 TERMS OF DIFFERENT EDUCATIONAL 2428 02:04:00,760 --> 02:04:04,720 MATERIALS WE PUT OUT HAVING THEM 2429 02:04:04,720 --> 02:04:05,920 SO THE WHOLE SYSTEM ENDS UP KIND 2430 02:04:05,920 --> 02:04:08,080 OF GROWING TOGETHER AS WE ALL 2431 02:04:08,080 --> 02:04:10,680 COME TO REALIZE THE DISTINCTIONS 2432 02:04:10,680 --> 02:04:13,120 AND SO I'M CURIOUS ABOUT HOW ALL 2433 02:04:13,120 --> 02:04:17,200 OF YOU PERCEIVE THE DIFFERENCES 2434 02:04:17,200 --> 02:04:18,560 IN THE TYPES OF INFORMATION 2435 02:04:18,560 --> 02:04:21,200 DIFFERENT GROUPS NEED ACROSS THE 2436 02:04:21,200 --> 02:04:23,400 PIPELINE, IF YOU WILL, AND THE 2437 02:04:23,400 --> 02:04:24,480 DIFFERENT PLACES PEOPLE MIGHT 2438 02:04:24,480 --> 02:04:29,840 LOOK FOR THOSE MATERIALS. 2439 02:04:29,840 --> 02:04:31,560 >> I CAN START BY COMMENTING 2440 02:04:31,560 --> 02:04:34,240 CERTAINLY WHEN I LEARNED HOW TO 2441 02:04:34,240 --> 02:04:36,480 DO RESEARCH AND BACK A COUPLE 2442 02:04:36,480 --> 02:04:39,320 DECADES AGO, INCLUSION OF 2443 02:04:39,320 --> 02:04:42,240 PATIENTS AS EQUITABLE PARTNERS 2444 02:04:42,240 --> 02:04:51,680 WAS NOT PART OF THAT. 2445 02:04:51,680 --> 02:04:53,600 AND HOW TO BEST INCORPORATE 2446 02:04:53,600 --> 02:04:58,920 PATIENTS AS RESEARCH PARTNERS. 2447 02:04:58,920 --> 02:05:06,920 IT HAS TO BE AND GIVING EXAMPLES 2448 02:05:06,920 --> 02:05:09,200 HOW TO BEST ENGAGE PATIENT 2449 02:05:09,200 --> 02:05:19,320 PARTNERS. 2450 02:05:19,320 --> 02:05:21,160 >> THERE'S SILENCE WORK THAT 2451 02:05:21,160 --> 02:05:24,760 GOES BEHIND THE SCENES. 2452 02:05:24,760 --> 02:05:29,520 TRADITIONALLY THAT HAS NOT BEEN 2453 02:05:29,520 --> 02:05:33,200 RECOGNIZED AND THOSE SILENT 2454 02:05:33,200 --> 02:05:43,720 HOURS OF WORK HAVE A COST AND 2455 02:05:59,000 --> 02:06:01,200 WHEN I SAID WE HAVE GRANTS TO 2456 02:06:01,200 --> 02:06:08,360 LOOK AT GENOMICS IN DISABILITIES 2457 02:06:08,360 --> 02:06:11,320 AND THERE'S A MULTI-NATIONAL 2458 02:06:11,320 --> 02:06:16,600 GRANT IN LATIN AMERICA AND HAVE 2459 02:06:16,600 --> 02:06:19,880 PARTNERS IN THE UNITED STATES 2460 02:06:19,880 --> 02:06:21,960 AND DO STUDIES LOOKING AT 2461 02:06:21,960 --> 02:06:25,800 SYSTEMS AND THE SALARIES OF 2462 02:06:25,800 --> 02:06:27,840 PEOPLE AND SETTING THE STUDY WAS 2463 02:06:27,840 --> 02:06:28,320 MORE IMPORTANT BECAUSE 2464 02:06:28,320 --> 02:06:38,840 INFRASTRUCTURE DOESN'T EXIST. 2465 02:06:39,160 --> 02:06:40,520 THE TRUTH IS IT'S NOT 2466 02:06:40,520 --> 02:06:41,280 SUSTAINABLE UNLESS IT'S 2467 02:06:41,280 --> 02:06:47,160 RECOGNIZED. 2468 02:06:47,160 --> 02:06:48,280 AND RECOGNIZE THE WORK AND 2469 02:06:48,280 --> 02:06:58,760 EVERYBODY THAT'S PART OF IT. 2470 02:07:00,240 --> 02:07:04,040 >> WE NEED TO BE REACHING OUT TO 2471 02:07:04,040 --> 02:07:10,600 THE VERY FOLKS THAT WE ARE 2472 02:07:10,600 --> 02:07:10,880 INCLUDING. 2473 02:07:10,880 --> 02:07:15,920 AND USING PEER RESEARCHERS TO 2474 02:07:15,920 --> 02:07:26,480 INFORM YOUR PRACTICE THE PEOPLE 2475 02:07:28,400 --> 02:07:31,800 YOU ARE HELPING OR ADVOCATING 2476 02:07:31,800 --> 02:07:36,240 FOR ARE INCLUDED IN THE 2477 02:07:36,240 --> 02:07:36,920 CONVERSATIONS BECAUSE THEY CAN 2478 02:07:36,920 --> 02:07:38,680 HAVE IT BE A SECONDARY SOURCE. 2479 02:07:38,680 --> 02:07:49,040 GO TO THE PRIMARY SOURCE. 2480 02:07:49,040 --> 02:07:51,560 I LEARN ALL THE TIME AND IT'S 2481 02:07:51,560 --> 02:08:02,000 COME TO BETTER INFORM ME. 2482 02:08:06,040 --> 02:08:07,520 AND THERE'S GROUPS LIKE FACEBOOK 2483 02:08:07,520 --> 02:08:08,680 AND TWITTER AND DISABILITY 2484 02:08:08,680 --> 02:08:09,200 TWITTER. 2485 02:08:09,200 --> 02:08:19,520 VERY INFORMATIVE. 2486 02:08:20,560 --> 02:08:22,840 AND PEOPLE ARE SHARING THEIR 2487 02:08:22,840 --> 02:08:24,040 HISTORY AND LIVED EXPERIENCE 2488 02:08:24,040 --> 02:08:29,040 THROUGH BLOGS AND WRITTEN WORD 2489 02:08:29,040 --> 02:08:30,320 TYPICALLY BECAUSE THEY DON'T GET 2490 02:08:30,320 --> 02:08:36,200 THAT CONTROL ACROSS THE MEDIA 2491 02:08:36,200 --> 02:08:42,560 LANDSCAPE. 2492 02:08:42,560 --> 02:08:45,200 WE HAVE TO HAVE THEM HEAR US AND 2493 02:08:45,200 --> 02:08:50,680 THAT MAY SHOW UP IN RESEARCH AND 2494 02:08:50,680 --> 02:08:55,680 OUTREACH. 2495 02:08:55,680 --> 02:08:57,840 I WANT TO INCLUDE THOSE POINTS. 2496 02:08:57,840 --> 02:08:59,360 >> DO YOU HAVE ANOTHER THOUGHT 2497 02:08:59,360 --> 02:09:04,240 TO ADD ALONG THOSE LINES? 2498 02:09:04,240 --> 02:09:05,640 >> I FEEL ONE THING ABOUT 2499 02:09:05,640 --> 02:09:08,360 REACHING OUT TO PEOPLE THROUGH 2500 02:09:08,360 --> 02:09:08,920 SOCIAL MEDIA AND DIFFERENT 2501 02:09:08,920 --> 02:09:10,920 ETHNIC DIVERSITY AND WHAT I 2502 02:09:10,920 --> 02:09:12,240 REALIZED IS PUTTING IT OUT AND 2503 02:09:12,240 --> 02:09:13,880 SAYING COME AND JOIN US IS NOT 2504 02:09:13,880 --> 02:09:14,120 ENOUGH. 2505 02:09:14,120 --> 02:09:15,520 WE NEED TO SET UP A PLATFORM 2506 02:09:15,520 --> 02:09:17,200 WHICH HAS A CONTINUOUS 2507 02:09:17,200 --> 02:09:20,560 ENGAGEMENT AND WHEN WE SET UP 2508 02:09:20,560 --> 02:09:22,360 THIS EVERY TWO WEEKS RESEARCHERS 2509 02:09:22,360 --> 02:09:24,520 ARE COMING TO YOU AND THAT'S A 2510 02:09:24,520 --> 02:09:26,360 BIG DRAW BECAUSE FOR US TO GO 2511 02:09:26,360 --> 02:09:29,120 GET A NEUROLOGY APPOINTMENT FROM 2512 02:09:29,120 --> 02:09:33,320 A DIFFERENT -- IT'S LIKE NOT 2513 02:09:33,320 --> 02:09:33,840 FEASIBLE. 2514 02:09:33,840 --> 02:09:35,880 THIS WAY SOMETIMES 500 LIVE 2515 02:09:35,880 --> 02:09:37,520 PEOPLE ATTEND BECAUSE THEY WANT 2516 02:09:37,520 --> 02:09:39,000 ACCESS TO WHAT THAT RESEARCHER 2517 02:09:39,000 --> 02:09:43,080 OR NEUROLOGIST OR PHARMA 2518 02:09:43,080 --> 02:09:44,080 COMPANIES SAY. 2519 02:09:44,080 --> 02:09:45,160 THIS HAS BEEN ALMOST TWO YEARS 2520 02:09:45,160 --> 02:09:54,080 AND PEOPLE CALL IT HAPPY HOUR. 2521 02:09:54,080 --> 02:09:57,000 AND THEY BUILT THIS ON BASED HOW 2522 02:09:57,000 --> 02:09:59,480 AS AN ENTREPRENEUR I WOULD GO TO 2523 02:09:59,480 --> 02:10:01,440 THIS EVENT AND THEN MEET 2524 02:10:01,440 --> 02:10:03,600 LIKE-MINDED PEOPLE AND SAY WHAT 2525 02:10:03,600 --> 02:10:04,840 ARE YOU DOING AND WHAT DOES YOUR 2526 02:10:04,840 --> 02:10:05,560 PITCH LOOK LIKE? 2527 02:10:05,560 --> 02:10:06,640 IT'S THE SAME. 2528 02:10:06,640 --> 02:10:07,920 WHEN YOU START GETTING 2529 02:10:07,920 --> 02:10:09,960 DIAGNOSED, YOU HAVE NO IDEA, I 2530 02:10:09,960 --> 02:10:13,200 DIDN'T EVEN KNOW WHAT ALS WAS. 2531 02:10:13,200 --> 02:10:15,800 YOU HAVE TO SOME BASIC QUESTION 2532 02:10:15,800 --> 02:10:17,720 AND I'D LOVE TO MEET OTHER 2533 02:10:17,720 --> 02:10:19,440 PEOPLE WHO ANSWERED THE 2534 02:10:19,440 --> 02:10:20,720 QUESTIONS. 2535 02:10:20,720 --> 02:10:22,120 AFTER THE EVENT PEOPLE HAVE 2536 02:10:22,120 --> 02:10:23,560 ABOUT 30, 45 MINUTES AND PEOPLE 2537 02:10:23,560 --> 02:10:24,160 DON'T LEAVE. 2538 02:10:24,160 --> 02:10:26,400 SOMETIMES WE HAVE TO GO, OKAY, 2539 02:10:26,400 --> 02:10:27,280 IN TWO WEEKS WE'LL MEET. 2540 02:10:27,280 --> 02:10:29,920 IT'S REALLY A SET UP LIKE PEOPLE 2541 02:10:29,920 --> 02:10:32,200 COME IN AND THEY NOW RECOGNIZE 2542 02:10:32,200 --> 02:10:33,760 EACH OTHER AND CAN FEEL 2543 02:10:33,760 --> 02:10:34,040 COMFORTABLE. 2544 02:10:34,040 --> 02:10:34,840 IT TOOK TIME. 2545 02:10:34,840 --> 02:10:36,880 IN THE BEGINNING WHEN WE SET IT 2546 02:10:36,880 --> 02:10:39,400 UP WE TOLD PEOPLE TO COME IN AND 2547 02:10:39,400 --> 02:10:44,560 SHOWED THEM HOW TO TURN OFF 2548 02:10:44,560 --> 02:10:45,720 THEIR CAMERA AND MICROPHONE IF 2549 02:10:45,720 --> 02:10:48,480 THEY DON'T WANT TO BE SEEN AND 2550 02:10:48,480 --> 02:10:50,720 PARTICIPATE AND BUILDING TRUST 2551 02:10:50,720 --> 02:10:52,440 IN THE COMMUNITY TAKES TIME AND 2552 02:10:52,440 --> 02:10:54,600 IT'S RINSE AND REPEAT AND WHAT 2553 02:10:54,600 --> 02:10:56,560 HAS WORKED WELL AND KEEP DOING 2554 02:10:56,560 --> 02:10:58,640 IT AND PEOPLE WILL START FEELING 2555 02:10:58,640 --> 02:10:59,960 COMFORTABLE AND THAT'S BEEN MY 2556 02:10:59,960 --> 02:11:01,800 EXPERIENCE BUILDING AN 2557 02:11:01,800 --> 02:11:04,600 ENGAGEMENT PLATFORM WHERE PEOPLE 2558 02:11:04,600 --> 02:11:07,600 WILL COME TOGETHER. 2559 02:11:07,600 --> 02:11:08,440 WE'RE COVID MAYBE AND PEOPLE 2560 02:11:08,440 --> 02:11:18,760 WANTED TO CONNECT. 2561 02:11:20,480 --> 02:11:22,040 HAVING SOMETHING ONLINE IS 2562 02:11:22,040 --> 02:11:24,240 IMPORTANT TO SET UP AN ACTIVE 2563 02:11:24,240 --> 02:11:26,440 ENGAGEMENT AND HAVE THESE 2564 02:11:26,440 --> 02:11:28,720 DIALOGUES ABOUT WHAT'S GOING ON 2565 02:11:28,720 --> 02:11:30,960 AND HOW DO YOU CONTRIBUTE. 2566 02:11:30,960 --> 02:11:32,760 IT'S MAKING THAT PART OF THE 2567 02:11:32,760 --> 02:11:34,200 VALUE ADD AND PEOPLE WITH THE 2568 02:11:34,200 --> 02:11:43,960 DISEASE PART OF THE VALUE ADD. 2569 02:11:43,960 --> 02:11:50,280 >> I APPRECIATE THAT IMPACT OF 2570 02:11:50,280 --> 02:11:52,480 COVID AND THE TINY SQUARES ON 2571 02:11:52,480 --> 02:11:53,680 TEAM AND THOSE WHO CAN BE 2572 02:11:53,680 --> 02:11:57,200 REACHED AND THE MESSAGE AND 2573 02:11:57,200 --> 02:11:59,400 LEARNING MORE FROM THE 2574 02:11:59,400 --> 02:11:59,680 COMMUNITY. 2575 02:11:59,680 --> 02:12:01,920 >> THAT'S ALSO WHERE THE 2576 02:12:01,920 --> 02:12:06,760 DISABILITY COMMUNITY HAS BEEN 2577 02:12:06,760 --> 02:12:10,240 WE'VE BEEN ONLINE AND BEEN 2578 02:12:10,240 --> 02:12:10,800 NEEDING OPTIONS. 2579 02:12:10,800 --> 02:12:13,200 WE HAVE BEEN ASKING FOR 2580 02:12:13,200 --> 02:12:15,800 ACCOMMODATIONS FOR EONS AND IN 2581 02:12:15,800 --> 02:12:17,240 SO MANY SETTINGS AND PEOPLE SAY 2582 02:12:17,240 --> 02:12:27,280 NO. 2583 02:12:36,440 --> 02:12:42,080 THERE'S A LOT OF ABLISM. 2584 02:12:42,080 --> 02:12:44,800 PARTICIPATION SHOULD NEVER GO 2585 02:12:44,800 --> 02:12:46,800 AWAY AND YOU CAN SHUT OUT A WIDE 2586 02:12:46,800 --> 02:12:49,200 VARIETY OF PEOPLE WHO NEED THAT, 2587 02:12:49,200 --> 02:12:53,200 LOW INCOME, POOR FOLKS, PEOPLE 2588 02:12:53,200 --> 02:12:57,920 WHERE THEY DON'T HAVE WI-FI 2589 02:12:57,920 --> 02:12:59,040 ACCESSIBILITY. 2590 02:12:59,040 --> 02:13:04,960 THERE'S RELIGIOUS SETTINGS, 2591 02:13:04,960 --> 02:13:12,400 HOMELESS SHELTERS AND JUST 2592 02:13:12,400 --> 02:13:12,960 ANOTHER THOUGHT. 2593 02:13:12,960 --> 02:13:15,960 >> I SEE EVERYONE SHAKING THEIR 2594 02:13:15,960 --> 02:13:17,640 HEADS IN AGREEMENT. 2595 02:13:17,640 --> 02:13:18,400 THAT'S GOOD. 2596 02:13:18,400 --> 02:13:22,040 WE ARE LOOKING AT THE TIME AND I 2597 02:13:22,040 --> 02:13:24,480 REALIZE WE HAVE HIT THE END OF 2598 02:13:24,480 --> 02:13:25,400 OUR SESSION. 2599 02:13:25,400 --> 02:13:28,920 I WANT TO THANK ALL OF YOU. 2600 02:13:28,920 --> 02:13:31,080 JANET EXTENDS HER THANKS AND IS 2601 02:13:31,080 --> 02:13:32,280 SO SORRY BUT SHE KEPT FALLING 2602 02:13:32,280 --> 02:13:34,160 OFF ZOOM AND GRATEFUL FOR THE 2603 02:13:34,160 --> 02:13:35,280 OPPORTUNITY TO SPEAK WITH YOU 2604 02:13:35,280 --> 02:13:38,120 GUYS WHEN YOU WERE PLANNING THIS 2605 02:13:38,120 --> 02:13:40,920 TO COME IN AND FOR YOUR NIRNL 2606 02:13:40,920 --> 02:13:41,280 PRESENTATIONS. 2607 02:13:41,280 --> 02:13:47,680 I WANT TO THANK YOU SWELL -- 2608 02:13:47,680 --> 02:13:48,600 THANK YOU AS WELL FOR YOUR 2609 02:13:48,600 --> 02:13:49,160 PRESENTATIONS. 2610 02:13:49,160 --> 02:13:50,200 BEFORE I GO INTO HOUSEKEEPING 2611 02:13:50,200 --> 02:13:52,280 I'M GOING TO ASK OUR DIRECTOR, 2612 02:13:52,280 --> 02:13:53,240 DR. KOROSHETZ TO MAKE A FEW 2613 02:13:53,240 --> 02:13:53,960 FINAL REMARKS FOR THE PUBLIC 2614 02:13:53,960 --> 02:14:04,080 SESSION. 2615 02:14:05,280 --> 02:14:05,880 >> THANK YOU. 2616 02:14:05,880 --> 02:14:09,200 THAT WAS A FASCINATING AND 2617 02:14:09,200 --> 02:14:15,160 IMPORTANT DISCUSSION. 2618 02:14:15,160 --> 02:14:17,200 YOU CAN'T DO THIS QUICK. 2619 02:14:17,200 --> 02:14:23,680 YOU HAVE TO BUILD THE 2620 02:14:23,680 --> 02:14:24,800 INFRASTRUCTURE. 2621 02:14:24,800 --> 02:14:29,200 YOU CAN'T HELICOPTER IN AND OUT 2622 02:14:29,200 --> 02:14:30,960 TO GET SUCCESS IN THE SPACE. 2623 02:14:30,960 --> 02:14:32,600 YOU'RE WORKING UPHILL BECAUSE 2624 02:14:32,600 --> 02:14:37,960 THE HEALTH CARE SYSTEM IS NOT 2625 02:14:37,960 --> 02:14:48,160 EQUITABLE. 2626 02:14:50,160 --> 02:14:52,480 AND YOU NEED TO DO IT TO BE 2627 02:14:52,480 --> 02:14:54,800 SUCCESSFUL AND OUTREACH TO 2628 02:14:54,800 --> 02:14:58,280 PEOPLE IRREGARDLESS OF THEIR 2629 02:14:58,280 --> 02:15:03,400 SOCIO ECONOMIC STATUS TO GET THE 2630 02:15:03,400 --> 02:15:13,920 WORK DONE FOR THEM I DON'T THINK 2631 02:15:14,680 --> 02:15:16,880 YOU CAN UNDERSTAND THE 2632 02:15:16,880 --> 02:15:18,960 COMPLEXITIES VERY QUICKLY. 2633 02:15:18,960 --> 02:15:20,200 IT TAKES TIME FOR PEOPLE TO GET 2634 02:15:20,200 --> 02:15:23,640 A SENSE OF WHAT THE DISEASES ARE 2635 02:15:23,640 --> 02:15:33,760 ABOUT. 2636 02:15:39,440 --> 02:15:44,680 AND THE EXPECTATIONS GOING INTO 2637 02:15:44,680 --> 02:15:44,920 THESE. 2638 02:15:44,920 --> 02:15:55,440 IT TAKES TIME IT MAY TAKE TIME 2639 02:15:56,360 --> 02:15:57,640 IN OUR SYSTEM. 2640 02:15:57,640 --> 02:16:01,000 I THINK THIS IS THE LAST TIME I 2641 02:16:01,000 --> 02:16:03,600 GET TO TALK TO YOU FOLKS AND 2642 02:16:03,600 --> 02:16:07,960 YOU'RE GOING INTO FEEDBACK 2643 02:16:07,960 --> 02:16:12,160 BREAKOUT SESSIONS NEXT RUN BY 2644 02:16:12,160 --> 02:16:13,760 PAUL GROSS AND THE NEXT PART OF 2645 02:16:13,760 --> 02:16:16,280 THE NON-PROFIT FORUM IS ALL 2646 02:16:16,280 --> 02:16:23,120 ABOUT NETWORKING AMONG THE 2647 02:16:23,120 --> 02:16:24,720 NONPROFIT AND THE NIH PEOPLE ARE 2648 02:16:24,720 --> 02:16:31,040 NOT ALLOWED TO BE THERE BUT IT'S 2649 02:16:31,040 --> 02:16:32,960 IMPORTANT TO GET A LOT OUT OF 2650 02:16:32,960 --> 02:16:33,760 HEARING FROM EACH OTHER IN THE 2651 02:16:33,760 --> 02:16:43,120 NETWORK SESSIONS. 2652 02:16:43,120 --> 02:16:44,560 AND THANKS TO THOSE WHO WORK 2653 02:16:44,560 --> 02:16:47,560 HARD IN PUTTING THIS TOGETHER. 2654 02:16:47,560 --> 02:16:51,640 EVERY YEAR WE WERE CHALLENGED BY 2655 02:16:51,640 --> 02:16:53,760 SAYING IT WAS GREAT LAST YEAR SO 2656 02:16:53,760 --> 02:16:57,160 WE CAN'T SCREW UP THE NEXT YEAR. 2657 02:16:57,160 --> 02:16:59,240 IT'S GETTING HARDER AND HARDER. 2658 02:16:59,240 --> 02:17:00,120 THANK GOODNESS I THINK WE DID IT 2659 02:17:00,120 --> 02:17:05,920 AGAIN. 2660 02:17:05,920 --> 02:17:07,280 AND PEOPLE INTERESTED IN THE 2661 02:17:07,280 --> 02:17:09,800 GROUP GOING FORWARD FOR NEXT 2662 02:17:09,800 --> 02:17:12,080 YEAR'S EVENT PLEASE LET US KNOW. 2663 02:17:12,080 --> 02:17:13,800 WE'RE ALWAYS LOOKING FOR MORE 2664 02:17:13,800 --> 02:17:20,080 PEOPLE TO WORK ON THIS AND ALSO 2665 02:17:20,080 --> 02:17:21,920 AND WE HAVE AN OPEN DOOR POLICY. 2666 02:17:21,920 --> 02:17:25,160 WE WANT TO HEAR FROM YOU AND 2667 02:17:25,160 --> 02:17:27,600 YOU'RE THE PEOPLE WE'RE WORKING 2668 02:17:27,600 --> 02:17:30,320 FOR AS YOU REPRESENT THE FOLKS 2669 02:17:30,320 --> 02:17:31,400 SUFFERING FROM NEUROLOGICAL 2670 02:17:31,400 --> 02:17:39,560 DISORDERS. 2671 02:17:39,560 --> 02:17:41,040 AND IF THERE'S THINGS THAT CAN 2672 02:17:41,040 --> 02:17:44,400 COME TO YOUR MIND THAT COULD 2673 02:17:44,400 --> 02:17:55,320 MAKE OUR JOINT ENDEAVORS MORE 2674 02:17:55,320 --> 00:00:00,000 SUCCESSFUL