1 00:00:06,689 --> 00:00:09,158 >> GOOD MORNING, EVERYONE. 2 00:00:09,158 --> 00:00:12,662 WELCOME TO THE 2025 NINDS 3 00:00:12,662 --> 00:00:14,397 NON-PROFIT FORUM, I'M THE DEPUTY 4 00:00:14,397 --> 00:00:18,434 DIRECTOR OF NINDS, PROUDING T 5 00:00:18,434 --> 00:00:19,802 O -- PROUD TO BE HERE AND 6 00:00:19,802 --> 00:00:22,538 HONORED FOR THE 20th GATHERING 7 00:00:22,538 --> 00:00:25,007 OF THE FORUM. 8 00:00:25,007 --> 00:00:26,409 THIS 20 YEARS REFLECTS A 9 00:00:26,409 --> 00:00:27,443 LONGSTANDING COMMITMENT TO 10 00:00:27,443 --> 00:00:29,345 PARTNERSHIP WITH THE COMMUNITY, 11 00:00:29,345 --> 00:00:31,681 AND REFLECTS OUR MISSION, TO DO 12 00:00:31,681 --> 00:00:33,149 BASIC NEUROSCIENCE TO UNDERSTAND 13 00:00:33,149 --> 00:00:34,517 DISEASES AND TO IMPROVE THE 14 00:00:34,517 --> 00:00:37,120 LIVES OF PEOPLE WITH LIVED 15 00:00:37,120 --> 00:00:41,724 EXPERIENCES WITH NEUROLOGICAL 16 00:00:41,724 --> 00:00:42,158 DISORDERS. 17 00:00:42,158 --> 00:00:44,560 IT IS CERTAINLY IMPORTANT TO 18 00:00:44,560 --> 00:00:47,764 RECOGNIZE THE PUBLIC/PRIVATE 19 00:00:47,764 --> 00:00:48,631 PARTNERSHIPS ARE FUNDAMENTAL, 20 00:00:48,631 --> 00:00:49,932 THE AMERICAN BRAIN COALITION WAS 21 00:00:49,932 --> 00:00:51,901 INSTRUMENTAL IN SUPPORTING US 22 00:00:51,901 --> 00:00:53,669 AND GETTING SUPPORT FROM 23 00:00:53,669 --> 00:00:56,305 SPONSORS TO ORGANIZERS OF THE 24 00:00:56,305 --> 00:00:56,672 EVENT. 25 00:00:56,672 --> 00:00:57,707 THE NIH AND NINDS HAS BEEN 26 00:00:57,707 --> 00:01:01,778 THROUGH A LOT OF CHANGE THE LAST 27 00:01:01,778 --> 00:01:02,979 FEW MONTHS, WE'VE LOST A LOT OF 28 00:01:02,979 --> 00:01:04,580 STAFF MEMBERS WHO IN THE PAST 29 00:01:04,580 --> 00:01:06,149 HAVE BEEN KEY IN ORGANIZING THIS 30 00:01:06,149 --> 00:01:07,550 EVENT, MAKING IT POSSIBLE. 31 00:01:07,550 --> 00:01:09,485 SO WE'RE MOST, MOST GRATEFUL TO 32 00:01:09,485 --> 00:01:11,420 ABC FOR BEING HERE ALONG WITH US 33 00:01:11,420 --> 00:01:13,289 AND FOR BRINGING THIS WONDERFUL 34 00:01:13,289 --> 00:01:14,190 COMMUNITY TOGETHER. 35 00:01:14,190 --> 00:01:17,160 WE'RE GOING TO HEAR ABOUT THE 36 00:01:17,160 --> 00:01:19,996 STATE OF THE SCIENCE, 37 00:01:19,996 --> 00:01:21,097 PUBLIC/PRIVATE PARTNERSHIPS AND 38 00:01:21,097 --> 00:01:22,398 STORYTELLING, REALLY ORGANIZED 39 00:01:22,398 --> 00:01:23,332 INTO THREE SESSIONS, 40 00:01:23,332 --> 00:01:25,001 CROSS-CUTTING THEMES AMONG ALL 41 00:01:25,001 --> 00:01:27,336 SO I ENCOURAGE YOU ALL TO THINK 42 00:01:27,336 --> 00:01:29,539 OUTSIDE OF THOSE BOXES AND TALK 43 00:01:29,539 --> 00:01:31,274 AMONGST THE GROUPS IN THE 44 00:01:31,274 --> 00:01:33,009 BREAKS, WHICH WE'VE ORGANIZED 45 00:01:33,009 --> 00:01:33,242 MANY. 46 00:01:33,242 --> 00:01:35,678 THIS IS ALSO A MILESTONE YEAR 47 00:01:35,678 --> 00:01:37,146 FOR NINDS, THE 75th 48 00:01:37,146 --> 00:01:39,482 ANNIVERSARY OF NINDS, SO IT'S 49 00:01:39,482 --> 00:01:41,083 PARTICULARLY SPECIAL TO BE HERE 50 00:01:41,083 --> 00:01:42,718 WITH ALL OF YOU TO TAKE A MOMENT 51 00:01:42,718 --> 00:01:46,789 TO ACKNOWLEDGE AND RECOGNIZE THE 52 00:01:46,789 --> 00:01:48,558 WONDERFUL SCIENCE BEING DONE AND 53 00:01:48,558 --> 00:01:50,092 CELEBRATING THE COMMUNITY AND 54 00:01:50,092 --> 00:01:51,861 BEING HERE TOGETHER. 55 00:01:51,861 --> 00:01:53,296 A FEW ORGANIZATIONAL NOTES, THE 56 00:01:53,296 --> 00:01:54,797 SESSION IS BEING RECORDED, A 57 00:01:54,797 --> 00:01:56,332 LINK TO THE RECORDING WILL BE 58 00:01:56,332 --> 00:01:58,100 SHARED WITH EVERYBODY ON THE 59 00:01:58,100 --> 00:01:59,435 NINDS WEBSITE. 60 00:01:59,435 --> 00:02:00,403 FOR THOSE PARTICIPATING 61 00:02:00,403 --> 00:02:02,271 VIRTUALLY THERE'S A Q&A FEATURE 62 00:02:02,271 --> 00:02:04,774 ON TEAMS THROUGH WHICH YOU CAN 63 00:02:04,774 --> 00:02:05,908 SUBMIT QUESTIONS, MONITORED 64 00:02:05,908 --> 00:02:06,542 THROUGH THE DAY. 65 00:02:06,542 --> 00:02:09,979 FOR THOSE HERE IN PERSON, THERE 66 00:02:09,979 --> 00:02:11,581 ARE STANDING MICROPHONES ABOUT, 67 00:02:11,581 --> 00:02:13,749 WE CAN BRING THEM OVER HANDHELD 68 00:02:13,749 --> 00:02:15,318 IF THAT'S EASIER, CHAT FEATURE 69 00:02:15,318 --> 00:02:17,153 IS OPEN FOR DISCUSSION DURING 70 00:02:17,153 --> 00:02:19,755 THE MEETING, LUNCH WILL BE 71 00:02:19,755 --> 00:02:22,458 PROVIDED COURTESY OF AMERICAN 72 00:02:22,458 --> 00:02:25,628 BRAIN COALITION AND SPONSOR ELI 73 00:02:25,628 --> 00:02:25,962 LILLY. 74 00:02:25,962 --> 00:02:28,264 WE'LL HAVE TWO QUIET ROOMS, LET 75 00:02:28,264 --> 00:02:28,998 THE STAFF AT THE REGISTRATION 76 00:02:28,998 --> 00:02:31,467 KNOW IF YOU NEED HELP FINDING 77 00:02:31,467 --> 00:02:33,836 THOSE OR ORGANIZING TIME IN 78 00:02:33,836 --> 00:02:34,036 THOSE. 79 00:02:34,036 --> 00:02:35,605 THERE'S ROOM TODAY AND BEYOND 80 00:02:35,605 --> 00:02:38,941 TODAY TO JOIN THE ONLINE 81 00:02:38,941 --> 00:02:40,176 CONVERSATION USING THE HASHTAG 82 00:02:40,176 --> 00:02:44,881 #OR NUMBER SIGN FOR THOSE OF A 83 00:02:44,881 --> 00:02:46,115 CERTAIN GENERATION, NINDS75. 84 00:02:46,115 --> 00:02:48,017 WITHOUT FURTHER ADO I'M GOING TO 85 00:02:48,017 --> 00:02:50,019 MOVE TO THE ACTUAL PROGRAM, 86 00:02:50,019 --> 00:02:51,387 WHICH IS GOING TO BE KICKED OFF 87 00:02:51,387 --> 00:02:55,391 BY THE DIRECTOR OF NINDS, DR. 88 00:02:55,391 --> 00:02:56,525 WALTER KOROSHETZ. 89 00:02:56,525 --> 00:02:58,194 WALTER NEEDS NO INTRODUCTION BUT 90 00:02:58,194 --> 00:03:01,130 A LITTLE BIT OF FUN BACKGROUND 91 00:03:01,130 --> 00:03:04,033 ABOUT WALTER, A BROOKLYN NATIVE, 92 00:03:04,033 --> 00:03:05,001 ATTENDED GEORGETOWN UNIVERSITY 93 00:03:05,001 --> 00:03:09,038 HERE WHERE IF YOU ASK HIM, HE 94 00:03:09,038 --> 00:03:12,041 WILL GIVE YOU A TOUR OF THE 95 00:03:12,041 --> 00:03:12,675 COLLEGE CAMPUS, STUDIED AT THE 96 00:03:12,675 --> 00:03:14,443 UNIVERSITY OF CHICAGO MEDICAL 97 00:03:14,443 --> 00:03:15,645 SCHOOL, STARTED RESIDENCY AND 98 00:03:15,645 --> 00:03:20,182 MOVED TO MASS GENERAL WHERE HE 99 00:03:20,182 --> 00:03:22,084 COMPLETED NEUROLOGY RESIDENCY, 100 00:03:22,084 --> 00:03:22,985 CHIEF RESIDENT. 101 00:03:22,985 --> 00:03:25,688 HE SPENT QUITE A LOT OF TIME AS 102 00:03:25,688 --> 00:03:27,757 A BASIC SCIENTIST LOOKING AT 103 00:03:27,757 --> 00:03:31,560 DISEASE MECHANISMS FOCUSING ON 104 00:03:31,560 --> 00:03:32,094 NEUROPHYSIOLOGY, BASIC 105 00:03:32,094 --> 00:03:33,462 ELECTROPHYSIOLOGY, HUNTINGTON'S 106 00:03:33,462 --> 00:03:34,897 DISEASE BUT BRINGING IN ASPECTS 107 00:03:34,897 --> 00:03:37,300 OF SCIENCE RELEVANT TO MANY 108 00:03:37,300 --> 00:03:37,733 DISORDERS. 109 00:03:37,733 --> 00:03:39,335 HE WENT ON TO HAVE A 110 00:03:39,335 --> 00:03:40,670 FOUNDATIONAL ROLE IN THE FIELD 111 00:03:40,670 --> 00:03:43,372 OF STROKE AND NEUROCRITICAL 112 00:03:43,372 --> 00:03:46,575 CARE, A LOT OF CENTERS THAT DO 113 00:03:46,575 --> 00:03:50,846 THAT NOW AS A MATTER OF COURSE 114 00:03:50,846 --> 00:03:51,514 REFLECT WALTER'S EARLY VISION IN 115 00:03:51,514 --> 00:03:51,981 THE FIELD. 116 00:03:51,981 --> 00:03:54,784 CAME TO THE NINDS IN 2007, HAS 117 00:03:54,784 --> 00:03:56,752 BEEN DIRECTOR FOR 10 YEARS, A 118 00:03:56,752 --> 00:03:59,188 LOT OF MILESTONES THIS DAY AND 119 00:03:59,188 --> 00:04:01,123 THIS REFLECTS A DECADE OF WALTER 120 00:04:01,123 --> 00:04:05,161 BEING HERE AS A LEADER OF THE 121 00:04:05,161 --> 00:04:07,063 NEUROSCIENCE COMMUNITY. 122 00:04:07,063 --> 00:04:07,863 WITHOUT FURTHER ADO, WALTER, 123 00:04:07,863 --> 00:04:11,267 HAPPY TO HAVE YOU KICK US OFF. 124 00:04:11,267 --> 00:04:13,169 >> THANKS VERY MUCH. 125 00:04:13,169 --> 00:04:16,505 WELCOME TO THE NON-PROFIT FORUM. 126 00:04:16,505 --> 00:04:18,641 PARTICULARLY OUR KEYNOTE 127 00:04:18,641 --> 00:04:19,976 SPEAKER, CONGRESSWOMAN JENNIFER 128 00:04:19,976 --> 00:04:20,743 WEXTON IS HERE, TALKING TO YOU 129 00:04:20,743 --> 00:04:21,677 IN A BIT. 130 00:04:21,677 --> 00:04:25,648 A SPECIAL DAY FOR US AT NINDS, 131 00:04:25,648 --> 00:04:28,818 AND WE'RE SO GRATEFUL TO THE 132 00:04:28,818 --> 00:04:29,986 AMERICAN BRAIN COALITION FOR 133 00:04:29,986 --> 00:04:32,455 HELPING US IN THIS TOUGH TIME, I 134 00:04:32,455 --> 00:04:34,557 THINK WHEN TIMES GET TOUGH, THE 135 00:04:34,557 --> 00:04:35,591 TOUGH GET TOUGHER. 136 00:04:35,591 --> 00:04:37,059 AND BAND TOGETHER. 137 00:04:37,059 --> 00:04:39,595 THAT'S WHAT HAPPENED. 138 00:04:39,595 --> 00:04:42,331 WE WERE UNABLE TO RUN MEETINGS 139 00:04:42,331 --> 00:04:43,332 BY OURSELVES AFTER THE REDUCTION 140 00:04:43,332 --> 00:04:45,868 IN FORCE BUT AMERICAN BRAIN 141 00:04:45,868 --> 00:04:48,437 COALITION CAME TO THE RESCUE AND 142 00:04:48,437 --> 00:04:52,608 SO WE HAVE A REALLY GREAT 143 00:04:52,608 --> 00:04:52,975 PROGRAM. 144 00:04:52,975 --> 00:04:55,111 ONCE AGAIN, I SAY IT EVERY YEAR, 145 00:04:55,111 --> 00:04:57,279 IT'S GOING TO BE HARD TO BEAT 146 00:04:57,279 --> 00:04:58,814 LAST YEAR, BUT I THINK WE ARE 147 00:04:58,814 --> 00:05:03,586 GOING TO DO IT THIS YEAR AGAIN. 148 00:05:03,586 --> 00:05:05,788 THIS IS PUT TOGETHER BY THE 149 00:05:05,788 --> 00:05:06,956 NON-PROFITS THEMSELVES. 150 00:05:06,956 --> 00:05:10,192 WE HELP AT NIH, BUT IT'S REALLY 151 00:05:10,192 --> 00:05:11,794 FOR THE NON-PROFITS, FOR US TO 152 00:05:11,794 --> 00:05:14,230 LISTEN TO THEM, FOR THEM TO HEAR 153 00:05:14,230 --> 00:05:16,699 THE NEWS FROM US, AND ALSO FOR 154 00:05:16,699 --> 00:05:19,135 THE NON-PROFITS TO WORK TOGETHER 155 00:05:19,135 --> 00:05:20,636 AND KIND OF COME TOGETHER AND 156 00:05:20,636 --> 00:05:22,605 LEARN FROM EACH OTHER, SO THEY 157 00:05:22,605 --> 00:05:25,441 CAN BE MORE SUCCESSFUL GOING TO 158 00:05:25,441 --> 00:05:26,776 THE NEXT YEAR. 159 00:05:26,776 --> 00:05:29,011 I HAVE HERE THE MEMBERS OF 160 00:05:29,011 --> 00:05:30,880 PLANNING COMMITTEE WHO WERE 161 00:05:30,880 --> 00:05:32,014 INVOLVED IN THE NON-PROFIT 162 00:05:32,014 --> 00:05:35,751 FORUM, HELPING US TO SET THE 163 00:05:35,751 --> 00:05:37,153 AGENDA, AND I THINK IT'S GOING 164 00:05:37,153 --> 00:05:40,823 TO BE A REALLY FANTASTIC DAY. 165 00:05:40,823 --> 00:05:43,859 I ALWAYS LEARN A LOT. 166 00:05:43,859 --> 00:05:46,929 LOTS OF GOOD MEMORIES THAT YOU 167 00:05:46,929 --> 00:05:48,964 HEAR AT THIS MEETING THAT STICK 168 00:05:48,964 --> 00:05:51,267 WITH YOU THROUGHOUT THE REST OF 169 00:05:51,267 --> 00:05:51,767 THE YEAR. 170 00:05:51,767 --> 00:05:56,338 NOW I WANT TO HAVE THE PRIVILEGE 171 00:05:56,338 --> 00:05:59,775 OF INTRODUCING MARK RASENICK, 172 00:05:59,775 --> 00:06:03,879 CHAIRMAN OF THE AMERICAN BRAIN 173 00:06:03,879 --> 00:06:07,016 COALITION, AND MARK HAS HAD A 174 00:06:07,016 --> 00:06:08,818 REALLY FANTASTIC CAREER AT THE 175 00:06:08,818 --> 00:06:10,553 UNIVERSITY OF ILLINOIS IN 176 00:06:10,553 --> 00:06:14,023 CHICAGO, WHERE HE IS PROFESSOR 177 00:06:14,023 --> 00:06:17,960 OF BIOPHYSICS, PHYSIOLOGY, AND 178 00:06:17,960 --> 00:06:18,260 PSYCHIATRY. 179 00:06:18,260 --> 00:06:22,798 THAT WAS ALWAYS MY HOPE AS A 180 00:06:22,798 --> 00:06:25,000 YOUNG KID IN COLLEGE BASICALLY, 181 00:06:25,000 --> 00:06:26,035 TO UNDERSTAND HOW BIOPHYSICS 182 00:06:26,035 --> 00:06:28,938 ALLOWS OUR BRAINS TO DO WHAT WE 183 00:06:28,938 --> 00:06:29,171 DO. 184 00:06:29,171 --> 00:06:31,373 I NEVER REALLY QUITE GOT THERE. 185 00:06:31,373 --> 00:06:32,875 NEITHER DID THE REST OF THE 186 00:06:32,875 --> 00:06:33,943 FIELD. 187 00:06:33,943 --> 00:06:37,546 BUT WE'RE MAKING PROGRESS. 188 00:06:37,546 --> 00:06:39,515 BUT MARK HAS BEEN INSTRUMENTAL 189 00:06:39,515 --> 00:06:42,818 IN MANY ASPECTS OF TRYING TO 190 00:06:42,818 --> 00:06:45,054 ADVANCE NEUROSCIENCE OVER HIS 191 00:06:45,054 --> 00:06:47,189 CAREER, HE WAS THE ROBERT WOOD 192 00:06:47,189 --> 00:06:49,158 JOHNSON FELLOW WITH SENATOR 193 00:06:49,158 --> 00:06:49,959 EDWARD KENNEDY FROM 194 00:06:49,959 --> 00:06:52,761 MASSACHUSETTS, MAYBE THAT WAS 195 00:06:52,761 --> 00:06:55,431 HIS START INTO UNDERSTANDING THE 196 00:06:55,431 --> 00:06:57,166 IMPORTANCE OF MESSAGING THE 197 00:06:57,166 --> 00:06:59,768 VALUE OF RESEARCH, NOT ONLY AT 198 00:06:59,768 --> 00:07:02,371 THE CONGRESSIONAL LEVEL BUT AT 199 00:07:02,371 --> 00:07:07,009 THE NON-PROFIT LEVEL. 200 00:07:07,009 --> 00:07:07,977 HE'S PARTICULARLY BEEN INVOLVED 201 00:07:07,977 --> 00:07:10,613 IN PROSECUTING THE IDEA THAT 202 00:07:10,613 --> 00:07:13,649 NEUROSCIENCE IS GLOBAL, AROUND 203 00:07:13,649 --> 00:07:15,818 THE WORLD, AND SO HE HAS FRIENDS 204 00:07:15,818 --> 00:07:18,120 IN EVERY CORNER THAT YOU CAN 205 00:07:18,120 --> 00:07:18,654 IMAGINE. 206 00:07:18,654 --> 00:07:20,689 AND HE'S A REAL MENSCH. 207 00:07:20,689 --> 00:07:22,525 SO I WANT TO INTRODUCE HIM, I'M 208 00:07:22,525 --> 00:07:24,860 SURE YOU'RE GOING TO LEARN SOME 209 00:07:24,860 --> 00:07:25,828 INTERESTING TID-BITS. 210 00:07:25,828 --> 00:07:30,633 BUT JUST TO SAY THAT AS WE 211 00:07:30,633 --> 00:07:32,201 ALWAYS -- I USUALLY INTERRUPT 212 00:07:32,201 --> 00:07:33,869 HIM AT SOME TIME DURING THE TALK 213 00:07:33,869 --> 00:07:35,738 BUT THE MAIN INTERRUPTION IS 214 00:07:35,738 --> 00:07:38,507 THAT NEUROLOGY IS TAKING OVER 215 00:07:38,507 --> 00:07:38,807 PSYCHIATRY. 216 00:07:38,807 --> 00:07:39,808 WE'RE GOING TO UNDERSTAND HOW 217 00:07:39,808 --> 00:07:43,412 THE CIRCUITS OF THE BRAIN WORK, 218 00:07:43,412 --> 00:07:45,381 AND THAT'S REALLY WHAT IS WHAT 219 00:07:45,381 --> 00:07:46,749 PSYCHIATRY IS ALL ABOUT. 220 00:07:46,749 --> 00:07:47,816 ALL CIRCUIT DISORDERS. 221 00:07:47,816 --> 00:07:50,452 MANY OF OUR DISORDERS ARE 222 00:07:50,452 --> 00:07:50,920 CIRCUIT DISORDERS. 223 00:07:50,920 --> 00:07:52,888 AND THROUGH THE BRAIN INITIATIVE 224 00:07:52,888 --> 00:07:55,057 WE HAVE THE OPPORTUNITY NOW TO 225 00:07:55,057 --> 00:07:56,892 SEE THOSE CIRCUITS IN ACTION AND 226 00:07:56,892 --> 00:08:00,596 I THINK IT'S GOING TO BE REALLY 227 00:08:00,596 --> 00:08:01,597 A POWERFUL NEW TOOL AND 228 00:08:01,597 --> 00:08:02,865 KNOWLEDGE GOING FORWARD. 229 00:08:02,865 --> 00:08:11,207 SO, MARK, THANK YOU VERY MUCH. 230 00:08:11,207 --> 00:08:12,741 >> THANK YOU. 231 00:08:12,741 --> 00:08:14,810 THAT'S VERY KIND, WALTER, 232 00:08:14,810 --> 00:08:17,379 ACTUALLY MY INTRODUCTION TO 233 00:08:17,379 --> 00:08:20,416 ADVOCACY AND ACTIVISM STARTED IN 234 00:08:20,416 --> 00:08:23,652 CHICAGO IN 1968. 235 00:08:23,652 --> 00:08:26,555 IN GRAND PARK. 236 00:08:26,555 --> 00:08:27,890 SO, I'M MARK RASENICK, I'M A 237 00:08:27,890 --> 00:08:29,425 PROFESSOR AT THE UNIVERSITY OF 238 00:08:29,425 --> 00:08:31,227 ILLINOIS, CHAIRMAN OF THE 239 00:08:31,227 --> 00:08:32,528 AMERICAN BRAIN COALITION. 240 00:08:32,528 --> 00:08:34,630 I DON'T NEED FIVE MINUTES. 241 00:08:34,630 --> 00:08:39,101 I THOUGHT YOU HAD CUE CARDS. 242 00:08:39,101 --> 00:08:43,272 AND ABC SERVES AS AN UMBRELLA 243 00:08:43,272 --> 00:08:45,908 ORGANIZATION, UNITING THE 244 00:08:45,908 --> 00:08:47,610 NATION'S LEADING PROFESSIONAL 245 00:08:47,610 --> 00:08:49,812 SOCIETIES IN NEUROLOGY, 246 00:08:49,812 --> 00:08:52,514 PSYCHIATRY, AND PSYCHOLOGY, 247 00:08:52,514 --> 00:08:54,550 ALONG WITH DISEASE-SPECIFIC 248 00:08:54,550 --> 00:08:55,484 ADVOCACY GROUPS, RESEARCH 249 00:08:55,484 --> 00:08:57,486 INSTITUTIONS, AND OUR INDUSTRY 250 00:08:57,486 --> 00:08:57,920 PARTNERS. 251 00:08:57,920 --> 00:08:59,288 OUR MISSION IS TO PROMOTE 252 00:08:59,288 --> 00:09:04,026 UNDERSTANDING OF THE BRAIN AND 253 00:09:04,026 --> 00:09:07,296 REDUCE ENGAGEMENT AND REDUCE -- 254 00:09:07,296 --> 00:09:09,932 WE FOCUS ON ENGAGEMENT AND 255 00:09:09,932 --> 00:09:10,199 ADVOCACY. 256 00:09:10,199 --> 00:09:13,135 MY OWN RESEARCH IS FOCUSED ON 257 00:09:13,135 --> 00:09:14,236 NEUROBIOLOGY OF DEPRESSION BUT 258 00:09:14,236 --> 00:09:17,906 AS WALTER SAID, IT'S ONE BRAIN. 259 00:09:17,906 --> 00:09:22,378 AND THE ABC IS COMPLETELYING 260 00:09:22,378 --> 00:09:25,114 AGNOSTIC AS TO INDUSTRY, 261 00:09:25,114 --> 00:09:25,648 NEUROLOGY, TRAUMATIC EVENT 262 00:09:25,648 --> 00:09:26,815 ELICITING A BROKEN BRAIN. 263 00:09:26,815 --> 00:09:29,918 WE'RE ALL TOGETHER IN THIS. 264 00:09:29,918 --> 00:09:31,854 SO THAT THESE BARRIERS ARE 265 00:09:31,854 --> 00:09:33,622 REALLY MORE ARTIFICIAL THAN 266 00:09:33,622 --> 00:09:36,792 REAL, AND HOPEFULLY WE CAN 267 00:09:36,792 --> 00:09:38,594 CONTINUE TO WORK TOGETHER TO 268 00:09:38,594 --> 00:09:39,395 MAKE PROGRESS TOWARDS 269 00:09:39,395 --> 00:09:42,898 UNDERSTANDING BRAIN DISEASE AND 270 00:09:42,898 --> 00:09:44,566 ULTIMATELY CURING IT. 271 00:09:44,566 --> 00:09:46,535 WE WORK CLOSELY WITH FEDERAL 272 00:09:46,535 --> 00:09:47,803 AGENCIES LIKE THE NINDS, AND 273 00:09:47,803 --> 00:09:52,274 WHEN WE LEARNED THE FORUM WAS AT 274 00:09:52,274 --> 00:09:53,542 RISK, DUE TO LOGISTICAL 275 00:09:53,542 --> 00:09:57,146 CONSTRAINTS WE STEPPED IN TO 276 00:09:57,146 --> 00:10:00,015 ENSURE THIS VITAL MEETING 277 00:10:00,015 --> 00:10:00,282 CONTINUES. 278 00:10:00,282 --> 00:10:04,720 WE SEND OUR THANKS TO THE FORUM 279 00:10:04,720 --> 00:10:05,454 SPONSORS, PARTICULARLY ELI LILLY 280 00:10:05,454 --> 00:10:09,525 WHO IS GOING TO FEED US LUNCH. 281 00:10:09,525 --> 00:10:10,926 AND JUST YESTERDAY AFTERNOON, 282 00:10:10,926 --> 00:10:13,162 THE AMERICAN BRAIN COALITION 283 00:10:13,162 --> 00:10:15,864 HOSTED A FORUM, WHERE DR. 284 00:10:15,864 --> 00:10:18,100 KOROSHETZ AND DR. KAYE AND A 285 00:10:18,100 --> 00:10:21,370 PANEL SPOKE TO A PACKED ROOM ON 286 00:10:21,370 --> 00:10:23,339 CAPITOL HILL ABOUT NEUROSCIENCE, 287 00:10:23,339 --> 00:10:25,007 BOTH FROM ADVOCACY, BASIC 288 00:10:25,007 --> 00:10:26,909 SCIENCE, AND CLINICAL SCIENCE 289 00:10:26,909 --> 00:10:29,244 AND A TRANSLATIONAL STANDPOINT. 290 00:10:29,244 --> 00:10:32,414 AND IT WAS REALLY -- IT WAS 291 00:10:32,414 --> 00:10:32,915 FANTASTIC. 292 00:10:32,915 --> 00:10:34,483 AND OUTSIDE THIS ROOM, AND ON 293 00:10:34,483 --> 00:10:37,353 THIS SLIDE, IS A SPECIAL IMPACT 294 00:10:37,353 --> 00:10:39,722 BANNER RECOGNIZING THE HUNDREDS 295 00:10:39,722 --> 00:10:41,990 OF ORGANIZATIONS ACROSS THE 296 00:10:41,990 --> 00:10:43,425 BRAIN SPACE, NON-PROFITS, 297 00:10:43,425 --> 00:10:45,394 ACADEMICS, INDUSTRY PARTNERS, 298 00:10:45,394 --> 00:10:47,429 MANY OF WHOM -- ALL OF WHOM HAVE 299 00:10:47,429 --> 00:10:48,831 SPONSORED THE NINDS FORUM, MANY 300 00:10:48,831 --> 00:10:50,866 OF WHOM ARE MEMBERS OF THE 301 00:10:50,866 --> 00:10:51,834 AMERICAN BRAIN COALITION, AND 302 00:10:51,834 --> 00:10:53,869 MANY OF WHOM SHOULD BE. 303 00:10:53,869 --> 00:10:56,538 AND TO KEEP US ENERGIZED FOR THE 304 00:10:56,538 --> 00:10:58,874 DAY AHEAD I'M HAPPY TO TURN IT 305 00:10:58,874 --> 00:11:01,143 OVER TO JENNIFER FRENCH, OUR ABC 306 00:11:01,143 --> 00:11:03,645 BOARD MEMBER AND EXECUTIVE 307 00:11:03,645 --> 00:11:05,581 DIRECTOR OF THE NEURAL TECHED IN 308 00:11:05,581 --> 00:11:09,284 WORK WHO PLAYED A KEY ROLE IN 309 00:11:09,284 --> 00:11:13,622 SHAPING EVERYTHING TODAY. 310 00:11:13,622 --> 00:11:13,889 JEN. 311 00:11:13,889 --> 00:11:14,556 DOES THAT WORK? 312 00:11:14,556 --> 00:11:16,859 >> YOU ALL CAN HEAR ME, RIGHT? 313 00:11:16,859 --> 00:11:20,796 LET'S GIVE APPLAUSE TO CHARLIE, 314 00:11:20,796 --> 00:11:24,800 MAKING ALL OF OUR AUDIO/VISUAL 315 00:11:24,800 --> 00:11:26,568 WORK FOR US, SO WE FIGURED WE'RE 316 00:11:26,568 --> 00:11:28,237 GOING TO BE HAVING PRESENTATIONS 317 00:11:28,237 --> 00:11:30,205 AND PANELS, TALKING ABOUT THINGS 318 00:11:30,205 --> 00:11:32,808 SERIOUS BUT WE -- IT'S 319 00:11:32,808 --> 00:11:34,443 SUMMERTIME, GUYS, WE ALL FEEL 320 00:11:34,443 --> 00:11:35,911 OUTSIDE. 321 00:11:35,911 --> 00:11:37,179 IT'S TIME TO DO SOMETHING A 322 00:11:37,179 --> 00:11:39,782 LITTLE MORE ENGAGING, IF YOU 323 00:11:39,782 --> 00:11:42,251 WILL, TO LET US GET TO KNOW EACH 324 00:11:42,251 --> 00:11:42,451 OTHER. 325 00:11:42,451 --> 00:11:44,686 WHILE CHARLIE BRINGS US UP ON 326 00:11:44,686 --> 00:11:46,355 THE SHARE SCREEN, ALL OF YOU 327 00:11:46,355 --> 00:11:49,425 HAVE YOUR CELL PHONES, RIGHT? 328 00:11:49,425 --> 00:11:51,527 EVEN THOSE ON VIRTUALLY, YOU 329 00:11:51,527 --> 00:12:01,904 HAVE A MOBILE PHONE. 330 00:12:02,805 --> 00:12:05,641 ALL RIGHT. 331 00:12:05,641 --> 00:12:05,841 OKAY. 332 00:12:05,841 --> 00:12:07,042 SO, IT'S VACATION SEASON. 333 00:12:07,042 --> 00:12:08,544 WE WANT TO GET TO KNOW YOU. 334 00:12:08,544 --> 00:12:11,046 IF YOU HAVE A MOBILE PHONE, GO 335 00:12:11,046 --> 00:12:13,916 AHEAD AND YOU CAN SCAN THAT QR 336 00:12:13,916 --> 00:12:14,316 CODE. 337 00:12:14,316 --> 00:12:17,486 OUR QUESTION TO YOU IS WHAT IS 338 00:12:17,486 --> 00:12:21,056 YOUR FAVORITE VACATION SPOT IN 339 00:12:21,056 --> 00:12:22,558 NORTH AMERICA? 340 00:12:22,558 --> 00:12:25,794 FOR THOSE ONLINE, YOU CAN ALSO 341 00:12:25,794 --> 00:12:27,830 SCAN THAT QR CODE OR IF THE SCAN 342 00:12:27,830 --> 00:12:38,307 DOESN'T WORK, YOU CAN PUT IN 343 00:12:39,341 --> 00:12:44,580 MENTI.COM AND ENTER 88033640. 344 00:12:44,580 --> 00:12:47,049 AGAIN, 88033640. 345 00:12:47,049 --> 00:12:49,785 AND WE'RE ALL THINKING ABOUT 346 00:12:49,785 --> 00:12:50,819 VACATIONS THESE DAYS, WHILE IT'S 347 00:12:50,819 --> 00:12:51,854 GETTING NICE AND HOT. 348 00:12:51,854 --> 00:12:53,455 OUR KIDS ARE ON BREAK. 349 00:12:53,455 --> 00:12:54,790 WE'RE THINKING ABOUT WHERE WE'RE 350 00:12:54,790 --> 00:12:58,227 GOING TO GO ON VACATION. 351 00:12:58,227 --> 00:13:00,262 WHERE IS YOUR FAVORITE VACATION 352 00:13:00,262 --> 00:13:01,463 SPOT IN NORTH AMERICA? 353 00:13:01,463 --> 00:13:03,565 WE HAVE CARIBBEAN REPRESENTED ON 354 00:13:03,565 --> 00:13:03,999 THERE. 355 00:13:03,999 --> 00:13:05,634 WE HAVE ALASKA, HAWAII WAY OUT 356 00:13:05,634 --> 00:13:06,468 THERE. 357 00:13:06,468 --> 00:13:09,271 I SEE A COUPLE HAWAIIS. 358 00:13:09,271 --> 00:13:11,707 WE SEE WHAT IS GETTING THE 359 00:13:11,707 --> 00:13:11,974 VOTES. 360 00:13:11,974 --> 00:13:15,477 I'LL GIVE YOU A COUPLE MORE 361 00:13:15,477 --> 00:13:15,878 MINUTES. 362 00:13:15,878 --> 00:13:17,713 WOW, I THINK CALIFORNIA AND 363 00:13:17,713 --> 00:13:21,550 NORTH CAROLINA KIND OF HAVE THAT 364 00:13:21,550 --> 00:13:22,751 MED ATLANTIC/NORTHERN CALIFORNIA 365 00:13:22,751 --> 00:13:24,586 OREGON AREA IN THE COMPETITION. 366 00:13:24,586 --> 00:13:26,154 IS THAT THE GREAT LAKES? 367 00:13:26,154 --> 00:13:30,792 NO, NEW ENGLAND JUST POPPED UP. 368 00:13:30,792 --> 00:13:31,793 LOOK AT THAT! 369 00:13:31,793 --> 00:13:33,128 NOT THAT WE'RE IN COMPETITION 370 00:13:33,128 --> 00:13:36,632 BUT WE'RE LOOKING AT WHERE 371 00:13:36,632 --> 00:13:37,232 EVERYBODY HAS THEIR FAVORITE 372 00:13:37,232 --> 00:13:41,169 VACATION SPOTS. 373 00:13:41,169 --> 00:13:47,409 VOTES ARE STILL COMING IN. 374 00:13:47,409 --> 00:13:48,610 THREE-WAY TIE, WHAT DO YOU 375 00:13:48,610 --> 00:13:49,044 THINK? 376 00:13:49,044 --> 00:13:51,280 FOR ANYBODY IN THE VISITOR 377 00:13:51,280 --> 00:13:53,615 BUREAU, FOR THOSE REGIONS OF THE 378 00:13:53,615 --> 00:13:54,850 COUNTRY, JUST SAYING, YOU MIGHT 379 00:13:54,850 --> 00:13:58,353 WANT TO THINK ABOUT SOMETHING. 380 00:13:58,353 --> 00:14:00,856 BUT, YEAH, LOOK AT SOME OF THESE 381 00:14:00,856 --> 00:14:01,356 PLACES. 382 00:14:01,356 --> 00:14:02,925 PEOPLE HAVE BEEN TO ALASKA, 383 00:14:02,925 --> 00:14:05,060 THERE'S HAWAII OUT THERE. 384 00:14:05,060 --> 00:14:06,328 WE ADOPTED CENTRAL AMERICA. 385 00:14:06,328 --> 00:14:08,664 THAT'S OKAY, SOME OF YOU IN 386 00:14:08,664 --> 00:14:12,000 CENTRAL AMERICA, PARTS OF CUBA, 387 00:14:12,000 --> 00:14:13,869 OH, WOW, THE SOUTH IS STARTING 388 00:14:13,869 --> 00:14:15,704 TO BUILD UP. 389 00:14:15,704 --> 00:14:17,272 I'M NOT OFFICIALLY ON ANY 390 00:14:17,272 --> 00:14:19,107 VACATION BOARD BUT WANTED TO LET 391 00:14:19,107 --> 00:14:25,113 YOU GUYS KNOW WHAT WE'RE 392 00:14:25,113 --> 00:14:25,414 THINKING OF. 393 00:14:25,414 --> 00:14:26,381 A FUN EXERCISE. 394 00:14:26,381 --> 00:14:27,983 WE HOPE YOU'RE NOT THINKING 395 00:14:27,983 --> 00:14:28,951 ABOUT VACATION TODAY WHILE WE'RE 396 00:14:28,951 --> 00:14:29,851 HAVING OUR PROGRAM BUT SOMETHING 397 00:14:29,851 --> 00:14:31,453 TO KEEP IN THE BACK OF YOUR HEAD 398 00:14:31,453 --> 00:14:32,654 WHAT WE'RE THINKING ABOUT AND 399 00:14:32,654 --> 00:14:34,623 SOMETHING TO TALK ABOUT LATER 400 00:14:34,623 --> 00:14:37,492 WHILE WE HAVE LUNCH. 401 00:14:37,492 --> 00:14:41,196 OUR NEXT QUESTION TO YOU IS A 402 00:14:41,196 --> 00:14:44,032 LITTLE MORE RELATED TO WHAT 403 00:14:44,032 --> 00:14:46,868 WE'RE GOING TO BE TALKING ABOUT 404 00:14:46,868 --> 00:14:47,302 TODAY. 405 00:14:47,302 --> 00:14:48,537 A LITTLE OBSCURE. 406 00:14:48,537 --> 00:14:50,606 WHAT FOOD OR DRINK WOULD YOUR 407 00:14:50,606 --> 00:14:51,440 BRAIN BE TODAY? 408 00:14:51,440 --> 00:14:53,275 THINK ABOUT THAT. 409 00:14:53,275 --> 00:14:57,112 WHAT FOOD OR DRINK WOULD YOUR 410 00:14:57,112 --> 00:15:00,849 BRAIN BE TODAY? 411 00:15:00,849 --> 00:15:11,059 BE CREATIVE. 412 00:15:14,429 --> 00:15:15,797 I'M GOING TO GIVE IT A FEW 413 00:15:15,797 --> 00:15:19,701 MINUTES WHILE LETTING RESPONSES 414 00:15:19,701 --> 00:15:23,171 COME N IN. 415 00:15:23,171 --> 00:15:25,007 THIS IS NOT COMPETITION, THIS IS 416 00:15:25,007 --> 00:15:25,374 CREATIVITY. 417 00:15:25,374 --> 00:15:27,676 WE WANT TO KNOW WHAT FOOD OR 418 00:15:27,676 --> 00:15:30,579 DRINK YOUR BRAIN IS TODAY. 419 00:15:30,579 --> 00:15:41,056 WE'RE STARTING TO BUILD UP. 420 00:15:53,735 --> 00:15:56,471 HERE'S THE BIG REVEAL. 421 00:15:56,471 --> 00:15:58,607 IRONIC, COFFEE IS FRONT AND 422 00:15:58,607 --> 00:15:58,840 CENTER. 423 00:15:58,840 --> 00:16:00,142 OKAY, JOHN NGAI FROM THE BRAIN 424 00:16:00,142 --> 00:16:04,112 INITIATIVE, JUST LETTING YOU 425 00:16:04,112 --> 00:16:07,449 KNOW. 426 00:16:07,449 --> 00:16:08,150 IT'S HOT. 427 00:16:08,150 --> 00:16:09,251 ICED COFFEE AND COFFEE GO 428 00:16:09,251 --> 00:16:09,785 TOGETHER. 429 00:16:09,785 --> 00:16:12,020 SOME OF US ARE WATER. 430 00:16:12,020 --> 00:16:13,155 SOMEBODY'S ALREADY THINKING -- A 431 00:16:13,155 --> 00:16:15,290 FEW PEOPLE ARE THINKING ABOUT 432 00:16:15,290 --> 00:16:15,490 5:00. 433 00:16:15,490 --> 00:16:19,327 I SEE A MARGARITA IN THERE. 434 00:16:19,327 --> 00:16:21,563 OATMEAL, WATERMELON. 435 00:16:21,563 --> 00:16:23,699 WOW, YOU GUYS ARE CREATIVE. 436 00:16:23,699 --> 00:16:25,467 WE HAVE A CREATIVE GROUP AMONGST 437 00:16:25,467 --> 00:16:25,767 US. 438 00:16:25,767 --> 00:16:27,869 JUST TO LET YOU KNOW THERE IS -- 439 00:16:27,869 --> 00:16:29,137 WE'RE IN THE LIQUID SPACE. 440 00:16:29,137 --> 00:16:30,972 I'M JUST SAYING. 441 00:16:30,972 --> 00:16:35,410 I SEE A LOT OF COFFEE, WATER, 442 00:16:35,410 --> 00:16:37,079 TEA, SOUP, ESPRESSO, SMOOTHEES. 443 00:16:37,079 --> 00:16:39,214 I THINK WE'RE A BIT IN THE 444 00:16:39,214 --> 00:16:40,916 LIQUID SPACE, DON'T YOU THINK? 445 00:16:40,916 --> 00:16:44,853 ALTHOUGH I DO SEE A SLUSHIE IN 446 00:16:44,853 --> 00:16:45,487 THERE, YEAH. 447 00:16:45,487 --> 00:16:48,090 SO, JUST TO GET US THINKING 448 00:16:48,090 --> 00:16:50,258 ABOUT WHAT WE THINK ABOUT OUR 449 00:16:50,258 --> 00:16:54,730 BRAINS AND WHAT WE'RE THINKING 450 00:16:54,730 --> 00:16:57,199 ABOUT TODAY, SO, I WANT YOU TO 451 00:16:57,199 --> 00:16:59,267 THINK ABOUT NOT ONLY WHAT YOUR 452 00:16:59,267 --> 00:17:01,169 BRAIN IS DOING TODAY BUT HOW WE 453 00:17:01,169 --> 00:17:03,338 CAN FEED YOUR BRAIN TODAY AND 454 00:17:03,338 --> 00:17:05,607 WHAT OUR PANELISTS AND OUR 455 00:17:05,607 --> 00:17:07,342 SESSIONS TODAY WILL HELP TO FEED 456 00:17:07,342 --> 00:17:08,376 YOUR BRAIN. 457 00:17:08,376 --> 00:17:10,178 SO THANK YOU SO MUCH FOR 458 00:17:10,178 --> 00:17:11,379 PARTAKING IN OUR FUN EXERCISE 459 00:17:11,379 --> 00:17:12,114 FOR THE DAY. 460 00:17:12,114 --> 00:17:13,682 WE HOPE THE REST OF THE DAY WILL 461 00:17:13,682 --> 00:17:14,649 BE JUST AS FUN. 462 00:17:14,649 --> 00:17:15,817 I'M SURE IT WILL BE. 463 00:17:15,817 --> 00:17:19,554 AT THIS POINT I WANT TO HAND IT 464 00:17:19,554 --> 00:17:30,065 OVER TO DR. WALTER KOROSHETZ. 465 00:17:30,932 --> 00:17:32,467 WALTER? 466 00:17:32,467 --> 00:17:33,168 >> THAT WAS FUN, JEN. 467 00:17:33,168 --> 00:17:34,269 THANKS SO MUCH. 468 00:17:34,269 --> 00:17:36,571 WE'LL HAVE TO DO THAT MORE OFTEN 469 00:17:36,571 --> 00:17:37,339 HERE AT NINDS. 470 00:17:37,339 --> 00:17:39,841 WE HAVE A FUN GROUP, A FUN GROUP 471 00:17:39,841 --> 00:17:40,041 HERE. 472 00:17:40,041 --> 00:17:43,945 I WANTED TO TALK A LITTLE BIT 473 00:17:43,945 --> 00:17:47,949 ABOUT LAST 75 YEARS IN 10 474 00:17:47,949 --> 00:17:48,617 MINUTES. 475 00:17:48,617 --> 00:17:50,519 AND SO, YEAH, THERE'S A LOT TO 476 00:17:50,519 --> 00:17:50,752 SAY. 477 00:17:50,752 --> 00:17:53,255 I THINK THERE ARE SOME TAKEHOME 478 00:17:53,255 --> 00:17:53,822 POINTS THOUGH. 479 00:17:53,822 --> 00:17:56,658 I THINK MAYBE THE FIRST TAKEHOME 480 00:17:56,658 --> 00:18:03,131 POINT IS HOW WE GOT ACTUALLY TO 481 00:18:03,131 --> 00:18:03,465 BECOME NINDS. 482 00:18:03,465 --> 00:18:05,400 AND IT WASN'T A GROUP OF 483 00:18:05,400 --> 00:18:09,805 SCIENTISTS SAYING WE NEED AN 484 00:18:09,805 --> 00:18:10,338 NINDS. 485 00:18:10,338 --> 00:18:15,343 IT WAS MARY LASKER, WHO WAS A 486 00:18:15,343 --> 00:18:17,179 FAMOUS PHILANTHROPIST WHO HAS 487 00:18:17,179 --> 00:18:18,780 CONNECTIONS IN CONGRESS, AND SHE 488 00:18:18,780 --> 00:18:20,115 SAW, YOU KNOW, WHAT STROKE HAS 489 00:18:20,115 --> 00:18:22,217 DONE TO HER FAMILY AND WHAT 490 00:18:22,217 --> 00:18:23,985 NEUROLOGIC DISORDERS HAVE DONE 491 00:18:23,985 --> 00:18:27,355 TO OTHERS, AND SHE THOUGHT WE 492 00:18:27,355 --> 00:18:30,725 NEEDED A NEUROSCIENCE INSTITUTE 493 00:18:30,725 --> 00:18:33,161 AND PUSHED AND PUSHED AND 494 00:18:33,161 --> 00:18:35,564 PUSHED, I'M SURE PEOPLE PUSHED 495 00:18:35,564 --> 00:18:36,431 BACK. 496 00:18:36,431 --> 00:18:38,400 ACTUAL FACT, THERE WAS A BIG 497 00:18:38,400 --> 00:18:40,268 PUSHBACK JUST BEFORE SHE WAS 498 00:18:40,268 --> 00:18:41,703 VERY UNSURE WHETHER IT WAS GOING 499 00:18:41,703 --> 00:18:44,739 TO GET PASSED BECAUSE PEOPLE IN 500 00:18:44,739 --> 00:18:47,042 CONGRESS SAID, WELL, WE ALREADY 501 00:18:47,042 --> 00:18:48,510 HAVE THREE INSTITUTES. 502 00:18:48,510 --> 00:18:50,278 IF WE HAVE A FOURTH, EVERYBODY'S 503 00:18:50,278 --> 00:18:53,181 GOING TO WANT ONE. 504 00:18:53,181 --> 00:18:54,883 WELL, THAT CAME TRUE. 505 00:18:54,883 --> 00:18:56,451 27 INSTITUTES AND CENTERS. 506 00:18:56,451 --> 00:18:58,753 AND THE OTHER FUNNY STORY, PART 507 00:18:58,753 --> 00:19:05,360 OF IT, WAS SHE HAD A FRIEND 508 00:19:05,360 --> 00:19:07,495 WHOSE -- WHO HAD BLINDNESS IN 509 00:19:07,495 --> 00:19:09,164 THE FAMILY, AND SAID, WELL, CAN 510 00:19:09,164 --> 00:19:12,200 YOU GET BLINDNESS ON TOP OF 511 00:19:12,200 --> 00:19:13,568 NINDS, THE NEUROLOGIC INSTITUTE? 512 00:19:13,568 --> 00:19:15,136 SHE SAID, THAT'S A GREAT IDEA, 513 00:19:15,136 --> 00:19:18,840 BUT I HAVE TO GO BACK AND PUSH 514 00:19:18,840 --> 00:19:19,975 IT WITH THE CONGRESS. 515 00:19:19,975 --> 00:19:21,810 SHE CALLED ONE OF THE SENATORS, 516 00:19:21,810 --> 00:19:24,679 THINKING IT WAS GOING TO BE A 517 00:19:24,679 --> 00:19:25,547 WEEKS-LONG PROCESS. 518 00:19:25,547 --> 00:19:27,816 SHE SAID WE WANT TO PUT 519 00:19:27,816 --> 00:19:28,083 BLINDNESS. 520 00:19:28,083 --> 00:19:29,451 HE JUST INTERRUPTED HER AND 521 00:19:29,451 --> 00:19:30,685 SAID, OH, THAT'S A GOOD IDEA. 522 00:19:30,685 --> 00:19:32,554 AND THAT WAS IT. 523 00:19:32,554 --> 00:19:37,993 TURNED OUT HIS MOTHER DEVELOPED 524 00:19:37,993 --> 00:19:41,730 BLINDNESS, SO A LITTLE INSIGHT 525 00:19:41,730 --> 00:19:43,265 INTO HOW CONGRESS WORKS. 526 00:19:43,265 --> 00:19:45,166 IT STILL WORKS THAT WAY. 527 00:19:45,166 --> 00:19:50,071 AND THAT'S NOT SO BAD BECAUSE 528 00:19:50,071 --> 00:19:54,643 THAT'S REALLY A STORY ABOUT HOW 529 00:19:54,643 --> 00:19:57,212 BAD THINGS HAPPEN TO REAL PEOPLE 530 00:19:57,212 --> 00:19:59,180 INFLUENCES DECISION OF OUR 531 00:19:59,180 --> 00:20:01,349 LEGISLATORS TO MOVE, TO DO 532 00:20:01,349 --> 00:20:03,118 SOMETHING, NOT JUST FOR THE 533 00:20:03,118 --> 00:20:04,252 FOLKS SUFFERING NOW BUT PEOPLE 534 00:20:04,252 --> 00:20:08,056 IN THE FUTURE. 535 00:20:08,056 --> 00:20:11,126 AND THAT WAS THE BIRTH OF NINDS. 536 00:20:11,126 --> 00:20:15,196 IT STARTED WITH A LOAN FROM THE 537 00:20:15,196 --> 00:20:16,264 INSTITUTE OF MENTAL HEALTH, 538 00:20:16,264 --> 00:20:18,800 MILLION DOLLAR LOAN, STARTED THE 539 00:20:18,800 --> 00:20:21,236 INSTITUTE, BUT THEY DIDN'T GIVE 540 00:20:21,236 --> 00:20:22,270 IT ANY MONEY. 541 00:20:22,270 --> 00:20:23,939 MONEY CAME, IN THE BEGINNING 542 00:20:23,939 --> 00:20:27,342 MOSTLY SCIENTISTS IN BETHESDA 543 00:20:27,342 --> 00:20:27,742 WORKING, SOME REAL 544 00:20:27,742 --> 00:20:29,177 BREAKTHROUGHS, PEOPLE WHO WORKED 545 00:20:29,177 --> 00:20:32,681 ON THE FIRST, YOU KNOW, 546 00:20:32,681 --> 00:20:34,983 TECHNOLOGY THAT LET THE PET 547 00:20:34,983 --> 00:20:39,187 SCANNING, KEN COLE DEVELOPED THE 548 00:20:39,187 --> 00:20:40,188 PREPARATION OF VOLTAGE CLAMPING, 549 00:20:40,188 --> 00:20:41,790 THE SQUID AXON, WHICH HODGKIN 550 00:20:41,790 --> 00:20:43,358 AND HUXLEY CAME AND WORKED WITH 551 00:20:43,358 --> 00:20:50,031 HIM AND THIS GOT NOBEL PRIZE FOR 552 00:20:50,031 --> 00:20:57,572 FIGURING OUT ACTION POTENTIAL. 553 00:20:57,572 --> 00:21:01,042 ED KAYES, HE CAN TELL THE STORY 554 00:21:01,042 --> 00:21:03,211 WORKING WITH ROSCO BRADY, ONE OF 555 00:21:03,211 --> 00:21:04,479 THE PEOPLE WHO REALLY BENEFITED 556 00:21:04,479 --> 00:21:10,485 FROM BEING IN THE INTRAMURAL 557 00:21:10,485 --> 00:21:10,919 PROGRAM. 558 00:21:10,919 --> 00:21:12,854 I'VE BEEN TOLD HE WENT YEARS 559 00:21:12,854 --> 00:21:14,356 WITHOUT PUBLISHING ANY PAPERS, 560 00:21:14,356 --> 00:21:16,291 WHEN PEOPLE ASKED HIM WHAT'S 561 00:21:16,291 --> 00:21:18,560 GOING ON, WHAT IS TAKING SO LONG 562 00:21:18,560 --> 00:21:22,163 HE SAID I'M TRYING TO FIND A 563 00:21:22,163 --> 00:21:23,732 CURE FOR GAUCHER'S DISEASE. 564 00:21:23,732 --> 00:21:25,100 PEOPLE SAID GO AHEAD, ROSCO. 565 00:21:25,100 --> 00:21:25,734 HE DID. 566 00:21:25,734 --> 00:21:28,236 ED WAS INVOLVED IN MOVING THAT 567 00:21:28,236 --> 00:21:29,971 OUT TO THE PATIENTS. 568 00:21:29,971 --> 00:21:31,206 SO WE HAVE I THINK THROUGHOUT 569 00:21:31,206 --> 00:21:39,214 THE DAY WE'LL HEAR GOOD STORIES 570 00:21:39,214 --> 00:21:39,748 LIKE THAT. 571 00:21:39,748 --> 00:21:42,050 AND WHEN YOU THINK ABOUT NINDS, 572 00:21:42,050 --> 00:21:43,585 HERE YOU'RE IN THE BUILDING 573 00:21:43,585 --> 00:21:44,786 WHERE THE STAFF WORK. 574 00:21:44,786 --> 00:21:46,321 THEY ARE WORKING TO GET GRANTS 575 00:21:46,321 --> 00:21:48,857 OUT TO THE SCIENTISTS AROUND THE 576 00:21:48,857 --> 00:21:49,224 COUNTRY. 577 00:21:49,224 --> 00:21:55,263 THAT'S REALLY THE CORE OF WHAT 578 00:21:55,263 --> 00:21:55,797 WE DO. 579 00:21:55,797 --> 00:21:57,532 NINDS IS NOT JUST THE STAFF 580 00:21:57,532 --> 00:21:57,999 HERE. 581 00:21:57,999 --> 00:22:00,135 NINDS IS THE GRANTEES WHO GET 582 00:22:00,135 --> 00:22:02,804 THE FUNDS AND WORK, PUT THEIR 583 00:22:02,804 --> 00:22:04,239 WHOLE CAREERS INTO TRYING TO GET 584 00:22:04,239 --> 00:22:06,374 ANSWERS TO ADVANCE OUR MISSION, 585 00:22:06,374 --> 00:22:07,675 TO UNDERSTAND THE NERVOUS SYSTEM 586 00:22:07,675 --> 00:22:09,744 AND USE THAT KNOWLEDGE TO REDUCE 587 00:22:09,744 --> 00:22:13,481 THE SUFFERING DUE TO NEUROLOGIC 588 00:22:13,481 --> 00:22:14,049 DISORDERS. 589 00:22:14,049 --> 00:22:15,950 PEOPLE PUT THEIR CAREERS OVER 590 00:22:15,950 --> 00:22:17,318 THE LAST 75 YEARS, LOTS OF 591 00:22:17,318 --> 00:22:18,820 PEOPLE PUT THEIR CAREERS INTO 592 00:22:18,820 --> 00:22:24,292 THIS AND WE MADE REALLY GOOD 593 00:22:24,292 --> 00:22:24,592 PROGRESS. 594 00:22:24,592 --> 00:22:26,394 NOT AS GOOD AS WE'D LIKE BUT 595 00:22:26,394 --> 00:22:28,229 WE'VE MADE GOOD PROGRESS. 596 00:22:28,229 --> 00:22:29,798 AND THE OTHER PART OF THE 597 00:22:29,798 --> 00:22:31,032 ECOSYSTEM OF COURSE IS THE 598 00:22:31,032 --> 00:22:35,103 PEOPLE IN THIS ROOM, THE PEOPLE 599 00:22:35,103 --> 00:22:37,072 WHO REPRESENT IT'S PERSONS 600 00:22:37,072 --> 00:22:37,639 SUFFERING WITH NEUROLOGICAL 601 00:22:37,639 --> 00:22:37,906 DISEASES. 602 00:22:37,906 --> 00:22:39,040 THAT'S WHAT IT'S ALL ABOUT. 603 00:22:39,040 --> 00:22:40,942 AND YOU REPRESENT THEM. 604 00:22:40,942 --> 00:22:42,777 WE'RE TRYING TO HELP GET 605 00:22:42,777 --> 00:22:44,979 SOLUTIONS AND HOPE FOR THOSE 606 00:22:44,979 --> 00:22:52,420 FOLKS, SO TOGETHER WE WORK 607 00:22:52,420 --> 00:22:54,155 TOGETHER AND THAT'S WHERE OUR 608 00:22:54,155 --> 00:22:55,423 POWER COMES FROM, NOT SOME 609 00:22:55,423 --> 00:22:56,324 DIRECTOR SITTING IN OFFICE 610 00:22:56,324 --> 00:22:57,859 DECIDING WHAT TO DO. 611 00:22:57,859 --> 00:22:59,294 IT'S REALLY A JOINT COMMUNITY 612 00:22:59,294 --> 00:23:01,629 EFFORT TO DO THE BEST THINGS 613 00:23:01,629 --> 00:23:06,835 WITH THE RESOURCES THE CONGRESS 614 00:23:06,835 --> 00:23:07,735 GIVES US. 615 00:23:07,735 --> 00:23:09,871 AND THEN THE MOST IMPORTANT 616 00:23:09,871 --> 00:23:11,773 GROUP, NEVER FORGET, ARE THE 617 00:23:11,773 --> 00:23:13,108 PEOPLE WITH DISEASES WHO HAVE 618 00:23:13,108 --> 00:23:14,709 TAKEN PART IN THE RESEARCH OVER 619 00:23:14,709 --> 00:23:16,111 THE YEARS. 620 00:23:16,111 --> 00:23:18,346 THERE MUST BE I THINK WE DO A 621 00:23:18,346 --> 00:23:21,182 TALLY EVERY YEAR, HOW MANY 622 00:23:21,182 --> 00:23:24,686 PEOPLE ARE RECRUITED INTO NINDS 623 00:23:24,686 --> 00:23:26,321 STUDIES, IT'S LIKE 100,000 624 00:23:26,321 --> 00:23:26,554 PEOPLE. 625 00:23:26,554 --> 00:23:27,922 IF YOU GO 75 YEARS, YOU'RE 626 00:23:27,922 --> 00:23:29,424 TALKING MILLIONS OF PEOPLE WHO 627 00:23:29,424 --> 00:23:32,360 HAVE TAKEN PART IN RESEARCH. 628 00:23:32,360 --> 00:23:35,663 AND THEY HAVE DONE IT AT GOOD 629 00:23:35,663 --> 00:23:37,165 COST TO THEM, OFTENTIMES THEY 630 00:23:37,165 --> 00:23:38,833 HAVE TROUBLES GETTING TO A 631 00:23:38,833 --> 00:23:39,601 DOCTOR'S OFFICE. 632 00:23:39,601 --> 00:23:41,469 THEY HAVE TO SIT AND WAIT, YOU 633 00:23:41,469 --> 00:23:44,272 KNOW, GO THROUGH ALL THE 634 00:23:44,272 --> 00:23:47,642 TESTING, THEY DON'T DO IT JUST 635 00:23:47,642 --> 00:23:47,876 ONCE. 636 00:23:47,876 --> 00:23:49,377 IF YOU'RE IN A TRIAL YOU'RE 637 00:23:49,377 --> 00:23:50,645 GETTING FOLLOWED UP EVERY COUPLE 638 00:23:50,645 --> 00:23:51,546 MONTHS OR SO. 639 00:23:51,546 --> 00:23:53,148 LOTS OF EFFORT ON THEIR PART AND 640 00:23:53,148 --> 00:23:55,049 THE FAMILIES WHO TAKE CARE OF 641 00:23:55,049 --> 00:23:57,418 THEM AND HELP THEM GET THROUGH 642 00:23:57,418 --> 00:23:58,920 THE RESEARCH. 643 00:23:58,920 --> 00:24:00,822 SO THAT'S OUR ECOSYSTEM. 644 00:24:00,822 --> 00:24:02,590 THE STAFF, THE SCIENTISTS, THE 645 00:24:02,590 --> 00:24:03,725 PEOPLE WITH DISORDERS, PEOPLE 646 00:24:03,725 --> 00:24:05,994 WHO REPRESENT THOSE PEOPLE WITH 647 00:24:05,994 --> 00:24:06,661 DISORDERS. 648 00:24:06,661 --> 00:24:09,464 AND AS I SAID IN THE BEGINNING, 649 00:24:09,464 --> 00:24:10,899 IF IT'S TOUGH TIMES, WE'RE ALL 650 00:24:10,899 --> 00:24:14,469 GOING TO GET TOUGHER AND WORK 651 00:24:14,469 --> 00:24:14,736 TOGETHER. 652 00:24:14,736 --> 00:24:20,875 NOW, IF YOU THINK ABOUT THE LAST 653 00:24:20,875 --> 00:24:24,846 75 YEARS, I MEAN, YOU KNOW, JUST 654 00:24:24,846 --> 00:24:26,581 WHAT WE JUST SAID WE DIDN'T 655 00:24:26,581 --> 00:24:30,018 ACTUALLY KNOW HOW NEURONS 656 00:24:30,018 --> 00:24:30,919 TRANSMITTED IMPULSES. 657 00:24:30,919 --> 00:24:33,988 AND IT WAS KEN COLE AND HODGKIN 658 00:24:33,988 --> 00:24:36,691 HUXLEY THAT LED TO THOSE 659 00:24:36,691 --> 00:24:36,991 DISCOVERIES. 660 00:24:36,991 --> 00:24:38,493 SO IN THE 75 YEARS WE'VE EXIST 661 00:24:38,493 --> 00:24:41,129 IT'S WE'VE GONE FROM REALLY NOT 662 00:24:41,129 --> 00:24:42,030 REALLY UNDERSTANDING ANYTHING 663 00:24:42,030 --> 00:24:45,200 ABOUT THE BRAIN TO HAVING GOOD 664 00:24:45,200 --> 00:24:45,800 KNOWLEDGE ABOUT CERTAIN 665 00:24:45,800 --> 00:24:47,268 COMPONENTS, BUT STILL IF I HAD 666 00:24:47,268 --> 00:24:50,605 TO GUESS I'D GUESS WE KNOW MAYBE 667 00:24:50,605 --> 00:24:52,006 2% OF HOW THE BRAIN WORKS. 668 00:24:52,006 --> 00:24:56,811 WE HAVE A GREAT DEAL TO LEARN. 669 00:24:56,811 --> 00:25:00,281 THE BRAIN IS A MASSIVE 85 670 00:25:00,281 --> 00:25:02,917 BILLION NEURONS, TRILLIONS OF 671 00:25:02,917 --> 00:25:04,652 CONNECTIONS, AND TO UNDERSTAND 672 00:25:04,652 --> 00:25:06,721 HOW THAT COMPUTER WORKS WE'RE 673 00:25:06,721 --> 00:25:10,658 PICKING AT THE ICEBERG RIGHT 674 00:25:10,658 --> 00:25:12,393 NOW. 675 00:25:12,393 --> 00:25:14,128 TREMENDOUS PROGRESS THROUGH THE 676 00:25:14,128 --> 00:25:17,198 BRAIN INITIATIVE, SEEING HOW THE 677 00:25:17,198 --> 00:25:18,433 CIRCUITS WORK. 678 00:25:18,433 --> 00:25:19,968 IF YOU LOOK AT THE NOBEL PRIZE 679 00:25:19,968 --> 00:25:23,371 AND ADVANCES IN 75 YEARS IN 680 00:25:23,371 --> 00:25:25,106 NEUROSCIENCE PREDOMINANTLY IN 681 00:25:25,106 --> 00:25:26,341 UNDERSTANDING MOLECULAR AND CELL 682 00:25:26,341 --> 00:25:32,647 BIOLOGY ISSUES RELATED TO 683 00:25:32,647 --> 00:25:33,414 NEUROSCIENCE. 684 00:25:33,414 --> 00:25:36,551 I FORGET HOW MANY THERE WERE, 685 00:25:36,551 --> 00:25:38,119 LIKE 38 NOBEL PRIZEs, AND 686 00:25:38,119 --> 00:25:39,153 THREE WERE ON CIRCUIT. 687 00:25:39,153 --> 00:25:40,355 NOW WE HAVE THE TOOLS FROM THE 688 00:25:40,355 --> 00:25:41,589 BRAIN INITIATIVE WHERE IT OPENS 689 00:25:41,589 --> 00:25:44,058 THE DOOR TO SEE HOW THAT 690 00:25:44,058 --> 00:25:45,693 COMPUTER WORKS, AND THAT'S GOING 691 00:25:45,693 --> 00:25:46,761 TO BE REALLY BIG. 692 00:25:46,761 --> 00:25:48,363 THE OTHER THING I THINK IS 693 00:25:48,363 --> 00:25:49,764 COMING THAT'S REALLY IMPORTANT 694 00:25:49,764 --> 00:25:53,968 IS THE USE OF GENOMIC THERAPIES 695 00:25:53,968 --> 00:25:55,036 TO TREAT DISORDERS. 696 00:25:55,036 --> 00:25:56,471 AND WE HAVE BEEN WORKING FOR 697 00:25:56,471 --> 00:25:58,406 YEARS TO DEVELOP A DRUG FOR THIS 698 00:25:58,406 --> 00:26:00,875 DISEASE OR THAT DISEASE, AND A 699 00:26:00,875 --> 00:26:02,510 LOT OF TIMES IT'S -- YOU KNOW, 700 00:26:02,510 --> 00:26:07,782 IT'S BEEN A TOUGH ROAD. 701 00:26:07,782 --> 00:26:10,652 I WORKED IN HUNTINGTON'S DISEASE 702 00:26:10,652 --> 00:26:12,253 FOR A WHILE. 703 00:26:12,253 --> 00:26:18,426 IN 1993 WE HAD A HUGE PARTY IN A 704 00:26:18,426 --> 00:26:19,427 HOTEL, BEAUTIFUL VIEW OF THE 705 00:26:19,427 --> 00:26:20,995 HARBOR IN BOSTON, FOUND THE GENE 706 00:26:20,995 --> 00:26:22,030 FOR HUNTINGTON'S. 707 00:26:22,030 --> 00:26:25,166 RECENTLY IN THE SAME HOSPITAL 708 00:26:25,166 --> 00:26:29,570 FOUND THE GENE FOR DYSMUTATED 709 00:26:29,570 --> 00:26:30,872 ALS MUTATIONS, THESE WERE GOINGS 710 00:26:30,872 --> 00:26:33,474 TO LEAD TO TREATMENTS IN FIVE 711 00:26:33,474 --> 00:26:34,242 YEARS, MAYBE SEVEN, EVERYBODY 712 00:26:34,242 --> 00:26:35,176 WAS SO EXCITED. 713 00:26:35,176 --> 00:26:37,178 NOW IT'S A LONG TIME AND WE 714 00:26:37,178 --> 00:26:37,912 DON'T HAVE TREATMENT BECAUSE 715 00:26:37,912 --> 00:26:40,148 THINGS TURNED OUT TO BE MORE 716 00:26:40,148 --> 00:26:41,416 COMPLICATED ON THE CELL BIOLOGY 717 00:26:41,416 --> 00:26:45,620 SIDE THAN ANYONE HAD IMAGINED. 718 00:26:45,620 --> 00:26:46,554 GENOMIC THERAPIES OFFER 719 00:26:46,554 --> 00:26:48,056 SOMETHING ELSE, TO GET AT THE 720 00:26:48,056 --> 00:26:52,427 ROOT OF THE PROBLEM AND SO THEY 721 00:26:52,427 --> 00:26:55,496 ARE ALSO VERY PRECISE. 722 00:26:55,496 --> 00:26:56,130 GENOMIC THERAPIES CAN BE 723 00:26:56,130 --> 00:26:57,865 TARGETED AT THE CELLS THAT NEED 724 00:26:57,865 --> 00:26:58,299 THEM. 725 00:26:58,299 --> 00:27:00,201 THAT ALLOWS YOU TO MAKE BIG 726 00:27:00,201 --> 00:27:02,704 EFFECT SIZES IN THE CELLS, BUT 727 00:27:02,704 --> 00:27:05,006 NOT CAUSE TROUBLE IN THE REST OF 728 00:27:05,006 --> 00:27:08,176 THE BRAIN OR BODY, MUCH MORE 729 00:27:08,176 --> 00:27:09,744 PRECISE, THAT'S REALLY AMAZING 730 00:27:09,744 --> 00:27:14,215 FEATURE THAT WE'RE LOOKING 731 00:27:14,215 --> 00:27:16,417 FORWARD IN MANY AREAS. 732 00:27:16,417 --> 00:27:18,586 RIGHT NOW MOST THE WORK IS IN 733 00:27:18,586 --> 00:27:19,554 THE RARE DISORDERS, PARTICULARLY 734 00:27:19,554 --> 00:27:21,622 THOSE THAT LEAD TO DEATH OR 735 00:27:21,622 --> 00:27:22,724 SEVERE DISABILITY IN CHILDREN 736 00:27:22,724 --> 00:27:26,027 BECAUSE THERE IS NO ALTERNATIVE. 737 00:27:26,027 --> 00:27:27,195 I THINK ONCE WE UNDERSTAND HOW 738 00:27:27,195 --> 00:27:31,866 TO DELIVER WHAT THE SIDE EFFECTS 739 00:27:31,866 --> 00:27:33,835 ARE, WE'LL BE ABLE TO MOVE INTO 740 00:27:33,835 --> 00:27:36,237 MORE COMMON DISORDERS AND 741 00:27:36,237 --> 00:27:37,171 NON-GENETIC DISORDERS TO 742 00:27:37,171 --> 00:27:38,840 MANIPULATE THE GENOME OF THESE 743 00:27:38,840 --> 00:27:42,043 CELLS TO PROTECT THEM AGAINST 744 00:27:42,043 --> 00:27:43,177 DYING OR MALFUNCTIONING. 745 00:27:43,177 --> 00:27:44,746 I'M REALLY EXCITED ABOUT THE 746 00:27:44,746 --> 00:27:45,012 FUTURE. 747 00:27:45,012 --> 00:27:47,248 IF YOU JUST THINK ABOUT THE PAST 748 00:27:47,248 --> 00:27:49,584 THOUGH, THERE HAVE BEEN SOME 749 00:27:49,584 --> 00:27:51,185 THINGS THAT WE CAN CELEBRATE. 750 00:27:51,185 --> 00:27:52,854 THE FIRST THING IF YOU WANT TO 751 00:27:52,854 --> 00:27:55,156 THINK ABOUT THE BIGGEST PUBLIC 752 00:27:55,156 --> 00:27:57,825 HEALTH IMPACT HAS BEEN IN 753 00:27:57,825 --> 00:27:58,326 STROKE. 754 00:27:58,326 --> 00:27:59,627 MARY LASKER WAS PUSHING FOR 755 00:27:59,627 --> 00:28:02,096 NINDS IN THE BEGINNING BECAUSE 756 00:28:02,096 --> 00:28:05,400 OF STROKE AND PRESIDENT KENNEDY 757 00:28:05,400 --> 00:28:07,468 WHEN HIS DAD HAD A STROKE PUSHED 758 00:28:07,468 --> 00:28:09,837 ON STROKE RESEARCH AS WELL. 759 00:28:09,837 --> 00:28:12,039 BUT STROKE RATES HAVE DROPPED BY 760 00:28:12,039 --> 00:28:14,709 ABOUT 70% SINCE I STARTED IN 761 00:28:14,709 --> 00:28:15,109 MEDICAL SCHOOL. 762 00:28:15,109 --> 00:28:19,714 AND SO IF YOU JUST THINK ABOUT 763 00:28:19,714 --> 00:28:24,318 THAT 70% DROP IN STROKE RATES 764 00:28:24,318 --> 00:28:25,153 MILLIONS OF PEOPLE ESCAPED A 765 00:28:25,153 --> 00:28:26,888 STROKE DUE TO RESEARCH HOW TO 766 00:28:26,888 --> 00:28:28,856 PREVENT A STROKE. 767 00:28:28,856 --> 00:28:30,291 THIS WASN'T SOME MAGIC THAT 768 00:28:30,291 --> 00:28:30,892 HAPPENED. 769 00:28:30,892 --> 00:28:33,027 IT WAS PEOPLE WHO JUST WERE 770 00:28:33,027 --> 00:28:35,096 SLAVING TO FIGURE OUT HOW TO DO 771 00:28:35,096 --> 00:28:36,330 THIS. 772 00:28:36,330 --> 00:28:39,434 ONE OF MY MENTORS, PHIL KESSLER, 773 00:28:39,434 --> 00:28:40,668 FROM OKLAHOMA, HAD A PICK-UP 774 00:28:40,668 --> 00:28:46,040 TRUCK, HE WAS RUNNING THE ATRIAL 775 00:28:46,040 --> 00:28:47,442 FIBRILLATION STUDY USING 776 00:28:47,442 --> 00:28:48,009 ANTI-COAGULATION. 777 00:28:48,009 --> 00:28:51,212 HE WOULD DRIVE HIS TRUCK ALL 778 00:28:51,212 --> 00:28:53,247 OVER NEW ENGLAND, HAD TRIALS 779 00:28:53,247 --> 00:28:54,682 GOING AT DIFFERENT HOSPITALS, 780 00:28:54,682 --> 00:28:56,684 BUT HE KNEW THEY COULDN'T DO IT 781 00:28:56,684 --> 00:28:58,519 ON THEIR OWN AND WOULD GET IN 782 00:28:58,519 --> 00:29:00,388 HIS TRUCK AND KEEP DRIVING 783 00:29:00,388 --> 00:29:02,790 AROUND, COLLECTING SAMPLES AND 784 00:29:02,790 --> 00:29:03,524 DATA FROM PATIENTS. 785 00:29:03,524 --> 00:29:14,235 AND DWHRAWN THAT TRIAL AND OTHD 786 00:29:17,805 --> 00:29:20,141 BENEFITS FOR ATRIAL FIBRILLATION 787 00:29:20,141 --> 00:29:20,541 STROKE. 788 00:29:20,541 --> 00:29:22,076 PEOPLE DO THESE THINGS. 789 00:29:22,076 --> 00:29:24,345 GET IN THEIR TRUCKS, WORK ALL 790 00:29:24,345 --> 00:29:26,414 NIGHT, THEY ARE SO ENGAGED IN 791 00:29:26,414 --> 00:29:28,416 THE VALUE OF WHAT THEY ARE DOING 792 00:29:28,416 --> 00:29:33,855 AND THAT'S WHAT HAS LED TO THESE 793 00:29:33,855 --> 00:29:34,121 ADVANCES. 794 00:29:34,121 --> 00:29:34,755 MULTIPLE SCLEROSIS, YOU KNOW, I 795 00:29:34,755 --> 00:29:36,924 DON'T KNOW HOW MANY DRUGS WE 796 00:29:36,924 --> 00:29:39,961 HAVE NOW, 14, 16 DIFFERENT 797 00:29:39,961 --> 00:29:40,561 DRUGS. 798 00:29:40,561 --> 00:29:42,630 EXACERBATION EMITTING M.S. IS 799 00:29:42,630 --> 00:29:45,233 PRETTY MUCH UNDER CONTROL. 800 00:29:45,233 --> 00:29:47,168 NOW WE LEARNED THAT PROGRESSIVE 801 00:29:47,168 --> 00:29:48,636 M.S. IS THE PROGRESS. 802 00:29:48,636 --> 00:29:53,407 AND WE'VE GOT TO FOCUS MORE ON 803 00:29:53,407 --> 00:29:56,344 THE PROGRESSIVE M.S., AS OPPOSED 804 00:29:56,344 --> 00:29:57,845 TO EXACERBATING REMITTING TYPES 805 00:29:57,845 --> 00:30:01,849 THAT HAVE BEEN SO WELL 806 00:30:01,849 --> 00:30:03,050 CONTROLLED NOW WITH MEDICATION. 807 00:30:03,050 --> 00:30:07,121 WHEN I WAS IN MEDICAL SCHOOL AND 808 00:30:07,121 --> 00:30:10,258 RESIDENCY, WE HAD ONLY STEROIDS, 809 00:30:10,258 --> 00:30:13,027 WE HAD THIS LITTLE JOKE THAT 810 00:30:13,027 --> 00:30:16,130 WHAT WE WERE GOING TO DO WAS GET 811 00:30:16,130 --> 00:30:17,732 RICH BY DEVELOPING A PILL THAT 812 00:30:17,732 --> 00:30:22,570 WOULD BE GOOD FOR ANY NEUROLOGIC 813 00:30:22,570 --> 00:30:23,271 DISEASE. 814 00:30:23,271 --> 00:30:25,206 WE HAD ASPIRIN, DILANTIN, 815 00:30:25,206 --> 00:30:26,974 PREDNISONE ALL IN ONE PILL, 816 00:30:26,974 --> 00:30:28,576 BECAUSE THAT WAS BASICALLY WHAT 817 00:30:28,576 --> 00:30:31,646 WE WERE USING FOR MOST 818 00:30:31,646 --> 00:30:33,414 NEUROLOGIC DISEASES. 819 00:30:33,414 --> 00:30:36,050 AND BUT THE NEURAL PILL NEVER 820 00:30:36,050 --> 00:30:37,919 CAME TO FRUITION, THANK GOD. 821 00:30:37,919 --> 00:30:39,754 WE HAVE MUCH MORE PRECISE 822 00:30:39,754 --> 00:30:43,324 THERAPIES FOR THESE DISORDERS. 823 00:30:43,324 --> 00:30:44,825 THINK ABOUT EPILEPSIES, AGAIN, 824 00:30:44,825 --> 00:30:46,861 WE HAD MAYBE THREE OR FOUR DRUGS 825 00:30:46,861 --> 00:30:48,563 BACK THEN. 826 00:30:48,563 --> 00:30:52,133 NOW THERE'S PROBABLY AGAIN 18 827 00:30:52,133 --> 00:30:52,767 DIFFERENT ANTI-EPILEPTIC AGENTS. 828 00:30:52,767 --> 00:30:54,101 WE STILL HAVE A PROBLEM. 829 00:30:54,101 --> 00:31:01,175 30% OF OF THE PEOPLE STILL HAVE 830 00:31:01,175 --> 00:31:04,312 UNCONTROLLED SEIZURES DESPITE 831 00:31:04,312 --> 00:31:06,047 THE DRUGS, DILANTIN AND TEGRATOL 832 00:31:06,047 --> 00:31:07,315 IS WHAT WE STARTED WITH. 833 00:31:07,315 --> 00:31:09,717 AND WE HAVE THE MIRACLES, SPINAL 834 00:31:09,717 --> 00:31:18,159 MUSCULAR ATROPHY, THERE WAS A 835 00:31:18,159 --> 00:31:20,861 TRIAL TO AFFECT SPLICING OF THE 836 00:31:20,861 --> 00:31:23,297 GOOD GENES, AND, YOU KNOW, A LOT 837 00:31:23,297 --> 00:31:24,665 OF DEBATE WHETHER THIS WAS GOING 838 00:31:24,665 --> 00:31:26,701 TO WORK, WHETHER IT WAS TOO LATE 839 00:31:26,701 --> 00:31:27,935 TO TRY. 840 00:31:27,935 --> 00:31:29,937 WE DECIDED, THE FIRST NATURAL 841 00:31:29,937 --> 00:31:32,006 HISTORY STUDY IN INFANTS, TO 842 00:31:32,006 --> 00:31:33,307 PREPARE FOR THE TRIAL, PEOPLE 843 00:31:33,307 --> 00:31:34,041 THOUGHT THAT, YOU KNOW, YOU'RE 844 00:31:34,041 --> 00:31:37,545 NOT GOING TO BE ABLE TO TREAT 845 00:31:37,545 --> 00:31:37,878 INFANTS. 846 00:31:37,878 --> 00:31:39,447 BUT WE THOUGHT IF WE WERE GOING 847 00:31:39,447 --> 00:31:41,349 TO MAKE A BIG DIFFERENCE YOU 848 00:31:41,349 --> 00:31:42,717 HAVE TO TREAT INFANTS. 849 00:31:42,717 --> 00:31:44,652 THE TRIAL WENT INTO INFANTS, THE 850 00:31:44,652 --> 00:31:46,053 KIND OF TRIAL EVERYBODY KNEW THE 851 00:31:46,053 --> 00:31:48,623 ANSWER BEFORE THE TRIAL WAS OVER 852 00:31:48,623 --> 00:31:53,427 BECAUSE EFFECT SIZE WAS 853 00:31:53,427 --> 00:31:53,694 GIGANTIC. 854 00:31:53,694 --> 00:31:55,696 KIDS THAT WOULD BE DYING ON 855 00:31:55,696 --> 00:31:57,198 VENTILATORS WERE STILL WALKING, 856 00:31:57,198 --> 00:31:58,733 STILL TO THIS DAY DOING PRETTY 857 00:31:58,733 --> 00:31:59,533 WELL. 858 00:31:59,533 --> 00:32:02,370 THAT WAS A MIRACLE OF THE FIRST 859 00:32:02,370 --> 00:32:05,506 GENOMIC THERAPY I THINK FOR US, 860 00:32:05,506 --> 00:32:08,309 AND NOW THERE'S A GENE 861 00:32:08,309 --> 00:32:10,144 REPLACEMENT FOR SMA, SO INSTEAD 862 00:32:10,144 --> 00:32:11,646 OF TREATMENT EVERY COUPLE MONTHS 863 00:32:11,646 --> 00:32:17,118 OF SPINAL FLUID IT'S A ONE-SHOT 864 00:32:17,118 --> 00:32:19,487 INJECTION, THAT'S I THINK BEEN 865 00:32:19,487 --> 00:32:20,888 KIND OF THIS LIGHT PULLING US, 866 00:32:20,888 --> 00:32:25,159 IF WE CAN DO THIS FOR SMA, WHAT 867 00:32:25,159 --> 00:32:27,128 ABOUT ALL THE OTHER NEUROGENETIC 868 00:32:27,128 --> 00:32:27,395 DISEASES? 869 00:32:27,395 --> 00:32:28,663 THERE'S NOT A GOOD EXCUSE WHY WE 870 00:32:28,663 --> 00:32:31,732 CAN'T DO IT FOR MORE AND DO IT 871 00:32:31,732 --> 00:32:33,934 QUICKLY SO I THINK WE'VE MADE A 872 00:32:33,934 --> 00:32:36,137 BIG PUSH HERE AT NINDS TO TRY 873 00:32:36,137 --> 00:32:40,107 AND INVEST IN GENOMIC RESEARCH. 874 00:32:40,107 --> 00:32:42,443 HATS OFF TO AMIR WHO IS HERE 875 00:32:42,443 --> 00:32:43,911 FROM DIVISION OF TRANSLATIONAL 876 00:32:43,911 --> 00:32:45,246 RESEARCH AND FOLKS WORKING WITH 877 00:32:45,246 --> 00:32:55,790 HIM TO GET GENOMIC THERAPIES OUT 878 00:32:56,791 --> 00:32:57,358 THERE. 879 00:32:57,358 --> 00:33:01,162 AND THE DRUG APPROVED FOR 880 00:33:01,162 --> 00:33:01,762 ATAXIA, AMAZING, RON BARTEK IS 881 00:33:01,762 --> 00:33:06,801 HERE, HAS BEEN THE FATHER OF THE 882 00:33:06,801 --> 00:33:08,969 NON-PROFIT FORUM, NOW WE'RE BOTH 883 00:33:08,969 --> 00:33:09,303 GRANDFATHERS. 884 00:33:09,303 --> 00:33:13,974 TOO BAD WE GOT OLDER, BUT, YEAH, 885 00:33:13,974 --> 00:33:16,444 ATAXIA WITH KIDS. 886 00:33:16,444 --> 00:33:18,512 NOW WE HAVE TREATMENT. 887 00:33:18,512 --> 00:33:23,784 SO TIME'S ON OUR SIDE. 888 00:33:23,784 --> 00:33:25,820 A LOT OF TOOLS NOW THAT WE 889 00:33:25,820 --> 00:33:27,088 DIDN'T HAVE FIVE YEARS AGO, 890 00:33:27,088 --> 00:33:28,556 DEFINITELY NOT TEN YEARS AGO, 891 00:33:28,556 --> 00:33:31,325 THAT'S WHAT'S GOING TO REALLY 892 00:33:31,325 --> 00:33:32,793 ADVANCE THE PROGRESS AND I DON'T 893 00:33:32,793 --> 00:33:33,961 THINK THERE'S ANYTHING TO STOP 894 00:33:33,961 --> 00:33:34,161 US. 895 00:33:34,161 --> 00:33:36,397 THE MORE RESOURCE WE HAVE, 896 00:33:36,397 --> 00:33:37,998 FASTER WE GO. 897 00:33:37,998 --> 00:33:39,333 WE'RE GOING TO GO, NO MATTER 898 00:33:39,333 --> 00:33:42,002 WHAT, AND I JUST WANTED TO END 899 00:33:42,002 --> 00:33:43,938 UP BY -- ON THAT POSITIVE NOTE, 900 00:33:43,938 --> 00:33:45,339 THERE'S LOTS OF THINGS YOU COULD 901 00:33:45,339 --> 00:33:47,074 BE NEGATIVE ABOUT THESE DAYS, 902 00:33:47,074 --> 00:33:51,645 BUT THE PEOPLE IN THIS ROOM, WE 903 00:33:51,645 --> 00:33:54,949 STICK TOGETHER, WE CAN DO FEEL 904 00:33:54,949 --> 00:33:55,382 POSITIVE. 905 00:33:55,382 --> 00:34:04,425 SO THAT'S MY STORY. 906 00:34:04,425 --> 00:34:10,931 I'M STICKING TO IT. 907 00:34:10,931 --> 00:34:16,070 AND NOW MY GREAT PLEASURE TO 908 00:34:16,070 --> 00:34:24,211 INTRODUCE OUR KEYNOTE 909 00:34:24,211 --> 00:34:27,348 CONGRESSWOMAN JENNIFER WEXTON; 910 00:34:27,348 --> 00:34:31,752 SERVED VIRGINIA'S 20th 911 00:34:31,752 --> 00:34:33,354 DISTRICTS, A TIRELESS ADVOCATE, 912 00:34:33,354 --> 00:34:35,756 DEDICATION TO BRAIN HEALTH AND 913 00:34:35,756 --> 00:34:37,424 NEUROLOGIC RESEARCH INFORMED BY 914 00:34:37,424 --> 00:34:38,959 HER OWN LIVED EXPERIENCE, LEFT A 915 00:34:38,959 --> 00:34:41,428 LASTING IMPACT. 916 00:34:41,428 --> 00:34:43,898 NOT JUST ON POLICY, ON THE LIVES 917 00:34:43,898 --> 00:34:46,400 OF PATIENTS AND FAMILIES ACROSS 918 00:34:46,400 --> 00:34:48,869 THE COUNTRY, SHE'LL HAVE AN 919 00:34:48,869 --> 00:34:49,670 IMPACT ON YOU TODAY. 920 00:34:49,670 --> 00:34:58,646 DURING TIME IN CONGRESS WAS A 921 00:34:58,646 --> 00:35:01,015 DRIVING FORCE TO BOLSTER 922 00:35:01,015 --> 00:35:05,352 RESEARCH, ENVIRONMENTAL TOXICANT 923 00:35:05,352 --> 00:35:10,224 EXPOSURE, NEURODEGENERATIVE 924 00:35:10,224 --> 00:35:12,193 DISEASE, PARKINSON'S, ATYPICAL 925 00:35:12,193 --> 00:35:14,428 PARKINSON'S, PSP, ALS, MULTIPLE 926 00:35:14,428 --> 00:35:17,164 SCLEROSIS, TO SAY THE REVOLUTION 927 00:35:17,164 --> 00:35:19,733 GENETICS ALLOWED US TO SEE THE 928 00:35:19,733 --> 00:35:22,469 GENETIC DRIVERS OF MANY 929 00:35:22,469 --> 00:35:25,506 DISORDERS BUT ALSO HAS TAUGHT US 930 00:35:25,506 --> 00:35:27,675 THAT THERE'S A CEILING THERE AND 931 00:35:27,675 --> 00:35:30,411 THE MAJORITY OF THE DRIVERS OF 932 00:35:30,411 --> 00:35:31,779 THINGS LIKE ALS AND PARKINSON'S 933 00:35:31,779 --> 00:35:32,680 ARE NOT GENETIC, THEY ARE OUT 934 00:35:32,680 --> 00:35:33,581 THERE IN THE ENVIRONMENT. 935 00:35:33,581 --> 00:35:35,883 WE HAVE TO FIND THEM. 936 00:35:35,883 --> 00:35:38,819 WE STARTED AN OFFICE HERE FOR 937 00:35:38,819 --> 00:35:42,056 THE NEUROEXPOSOME, DAVID JETT 938 00:35:42,056 --> 00:35:44,758 RUNS IT. 939 00:35:44,758 --> 00:35:47,828 AMIR TABIS, TRYING TO GET 940 00:35:47,828 --> 00:35:50,231 RESEARCH GOING TO GRAB ON AND 941 00:35:50,231 --> 00:35:51,765 PROVE WHAT IS REALLY DRIVING 942 00:35:51,765 --> 00:35:56,203 SOME OF THESE WHAT WE CALL 943 00:35:56,203 --> 00:35:56,937 SPORADIC NEURODEGENERATIVE 944 00:35:56,937 --> 00:35:58,239 DISEASE CONDITIONS. 945 00:35:58,239 --> 00:35:59,640 IT'S A REALLY BIG PROBLEM. 946 00:35:59,640 --> 00:36:01,075 WE DON'T HAVE THE GREAT TOOLS WE 947 00:36:01,075 --> 00:36:03,644 NEED TO GET IT BUT WE NEED TO 948 00:36:03,644 --> 00:36:07,715 KEEP WORKING TILL WE DO. 949 00:36:07,715 --> 00:36:10,551 THE CONGRESSWOMAN WAS 950 00:36:10,551 --> 00:36:11,852 INSTRUMENTAL IN PASSAGE OF 951 00:36:11,852 --> 00:36:13,153 NATURAL PARKINSON'S ACT, A 952 00:36:13,153 --> 00:36:14,889 BIPARTISAN ACT TO DEVELOP 953 00:36:14,889 --> 00:36:17,825 COORDINATED WHOLE GOVERNMENT 954 00:36:17,825 --> 00:36:19,293 RESPONSE TO PARKINSON'S DISEASE. 955 00:36:19,293 --> 00:36:22,363 FIRST FEDERAL BILL DEDICATED TO 956 00:36:22,363 --> 00:36:24,231 ENDING PARKINSON'S DISEASE, AND 957 00:36:24,231 --> 00:36:27,801 LANDMARK SUCCESS FOR THE BRAIN 958 00:36:27,801 --> 00:36:29,270 HEALTH COMMUNITY. 959 00:36:29,270 --> 00:36:30,738 IT TOOK A LONG TIME, LOTS OF 960 00:36:30,738 --> 00:36:32,439 THINGS HAPPENED IN THE 961 00:36:32,439 --> 00:36:33,007 GOVERNMENT. 962 00:36:33,007 --> 00:36:34,575 EVENTUALLY NINDS GOT THE 963 00:36:34,575 --> 00:36:39,213 DELEGATION TO RUN THAT PLAN AND 964 00:36:39,213 --> 00:36:40,180 DEVELOP THAT COUNCIL. 965 00:36:40,180 --> 00:36:41,515 WE'RE STILL WORKING THROUGH THE 966 00:36:41,515 --> 00:36:45,552 HHS SYSTEM. 967 00:36:45,552 --> 00:36:47,154 WE HAD GREAT VOLUNTEERS TO WORK 968 00:36:47,154 --> 00:36:51,091 ON THE COUNCIL. 969 00:36:51,091 --> 00:36:52,760 WE PICKED A SLATE BEST WE COULD. 970 00:36:52,760 --> 00:36:54,828 NOW IT'S WITH THE LAWYERS AND 971 00:36:54,828 --> 00:36:56,931 HHS PEOPLE AND HOPEFULLY IT SEES 972 00:36:56,931 --> 00:37:00,768 LIGHT OF DAY BEFORE THE REPORT 973 00:37:00,768 --> 00:37:03,103 IS DUE IN JANUARY. 974 00:37:03,103 --> 00:37:09,710 APOLOGIZE, IT'S BEEN TERRIBLE 975 00:37:09,710 --> 00:37:20,187 TRYING TO GET THINGS GOING. 976 00:37:35,069 --> 00:37:36,470 PLEASE JOIN ME IN WELCOMING THE 977 00:37:36,470 --> 00:37:40,908 CHAMPION FOR THE BRAIN 978 00:37:40,908 --> 00:37:51,318 COMMUNITY, CONGRESSWOMAN 979 00:37:55,756 --> 00:37:58,225 JENNIFER WEXTON. 980 00:37:58,225 --> 00:38:01,161 >> I'M JENNIFER'S HUSBAND, 981 00:38:01,161 --> 00:38:01,996 ANDREW WEXTON. 982 00:38:01,996 --> 00:38:03,163 BRIEF INTRODUCTION, AS MANY OF 983 00:38:03,163 --> 00:38:05,332 YOU MAY KNOW SHE HAS THIS 984 00:38:05,332 --> 00:38:07,968 AMAZING A.I. VOICE THAT 985 00:38:07,968 --> 00:38:09,970 REPLICATES HER ORIGINAL VOICE. 986 00:38:09,970 --> 00:38:10,938 IT'S AMAZING. 987 00:38:10,938 --> 00:38:15,743 AND IT DOESN'T ALWAYS WORK. 988 00:38:15,743 --> 00:38:18,078 WE GOT IT 11 MONTHS AGO, 989 00:38:18,078 --> 00:38:19,880 RECEIVED IT JULY 1 LAST YEAR, 990 00:38:19,880 --> 00:38:21,482 THE FIRST TIME WE USED IT 991 00:38:21,482 --> 00:38:22,616 OUTSIDE THE HOUSE WAS IN THE 992 00:38:22,616 --> 00:38:24,918 OVAL OFFICE WHEN THERE FOR THE 993 00:38:24,918 --> 00:38:26,420 SIGNING OF THE PARKINSON'S BILL. 994 00:38:26,420 --> 00:38:28,288 AND SHE GOT TO SIT AT THE 995 00:38:28,288 --> 00:38:29,256 PRESIDENT'S DESK WHILE SHE 996 00:38:29,256 --> 00:38:30,257 PLAYED IT FOR HIM. 997 00:38:30,257 --> 00:38:32,192 IT WAS QUITE A MOMENT. 998 00:38:32,192 --> 00:38:33,861 ANYWAY, WHEN WE USED IT AT HOME 999 00:38:33,861 --> 00:38:35,229 WHEN SHE TELLS ME TO GET HER 1000 00:38:35,229 --> 00:38:36,663 THINGS OR TAKE HER PLACES IT 1001 00:38:36,663 --> 00:38:37,965 WORKS FINE. 1002 00:38:37,965 --> 00:38:41,168 WHEN SHE TRIES TO UPLOAD A 1003 00:38:41,168 --> 00:38:42,703 20-MINUTE SPEECH, IT CAN BE 1004 00:38:42,703 --> 00:38:43,137 GLITCHY. 1005 00:38:43,137 --> 00:38:44,872 SHE PREVIOUSLY HAD HER 1006 00:38:44,872 --> 00:38:47,474 CONGRESSIONAL STAFF HELPING HER 1007 00:38:47,474 --> 00:38:49,643 WITH THIS, SO WE'VE BEEN TEXTING 1008 00:38:49,643 --> 00:38:51,512 BACK AND FORTH WITH FORMER CHIEF 1009 00:38:51,512 --> 00:38:53,914 WHO SENT US A VOICE FILE. 1010 00:38:53,914 --> 00:38:56,517 NOT QUITE THE MAIN PROGRAM. 1011 00:38:56,517 --> 00:38:57,484 IT'S A TEXT VERSION. 1012 00:38:57,484 --> 00:38:59,386 WE'LL PLAY IT. 1013 00:38:59,386 --> 00:39:02,456 HOPEFULLY IT WORKS OUT WELL. 1014 00:39:02,456 --> 00:39:12,666 APOLOGIES. 1015 00:39:22,142 --> 00:39:22,443 >> HELLO. 1016 00:39:22,443 --> 00:39:22,876 THANK YOU. 1017 00:39:22,876 --> 00:39:26,847 SO GREAT TO BE HERE WITH YOU ALL 1018 00:39:26,847 --> 00:39:29,183 THEY NINDS PUBLIC/PRIVATE 1019 00:39:29,183 --> 00:39:31,251 NON-PROFIT FORUM TODAY. 1020 00:39:31,251 --> 00:39:38,592 I'D LIKE TO EXPRESS MY THANKS TO 1021 00:39:38,592 --> 00:39:40,127 ADDRESS YOU ON BEHALF OF 1022 00:39:40,127 --> 00:39:42,329 MILLIONS OF AMERICA LIKE ME 1023 00:39:42,329 --> 00:39:43,130 BATTLING NEUROLOGICAL DISEASES. 1024 00:39:43,130 --> 00:39:45,165 ALMOST TWO YEARS AGO TO THE DAY 1025 00:39:45,165 --> 00:39:49,736 I WAS DIAGNOSED WITH PROGRESSIVE 1026 00:39:49,736 --> 00:39:51,371 SUPERVISOR NUCLEAR PALSY, PSP, 1027 00:39:51,371 --> 00:39:53,640 PARKINSON'S DISEASE ON STEROIDS, 1028 00:39:53,640 --> 00:39:56,944 A DESCRIPTOR I CAME UP WITH WHEN 1029 00:39:56,944 --> 00:40:00,948 PREPARING 20 COME OUT PUBLICLY. 1030 00:40:00,948 --> 00:40:06,253 I WANTED TO DESCRIBE THE 1031 00:40:06,253 --> 00:40:08,755 HORRORS, IT APPEARS I NAILED IT 1032 00:40:08,755 --> 00:40:10,657 ON THE CRITERIA. 1033 00:40:10,657 --> 00:40:11,825 HAVING LIVED WITH PSP FOR SEVEN 1034 00:40:11,825 --> 00:40:13,961 YEARS I'M SURE I HIT THE THIRD 1035 00:40:13,961 --> 00:40:15,329 ONE ON THE HEAD TOO. 1036 00:40:15,329 --> 00:40:17,464 I DON'T RECOMMEND IT. 1037 00:40:17,464 --> 00:40:20,968 PSP HAS SEVERELY IMPACTED MY 1038 00:40:20,968 --> 00:40:22,136 MOBILITY AND ABILITY TO SPEAK 1039 00:40:22,136 --> 00:40:25,672 AND I RELY ON THIS A.I. 1040 00:40:25,672 --> 00:40:26,840 RECREATION FOR PUBLIC SPEAKING 1041 00:40:26,840 --> 00:40:28,942 AND AT HOME WITH MY HUSBAND AND 1042 00:40:28,942 --> 00:40:31,812 SONS, WHEN I WANT TO BE 1043 00:40:31,812 --> 00:40:32,112 UNDERSTOOD. 1044 00:40:32,112 --> 00:40:33,347 BEFORE MY REVEAL BEGAN THE MOST 1045 00:40:33,347 --> 00:40:38,452 I ENGAGED WITH THE IDEA OF 1046 00:40:38,452 --> 00:40:39,720 HEALTH WAS PLAYING THE "NEW YORK 1047 00:40:39,720 --> 00:40:41,989 TIMES" GAME, I KEPT UP WELL WITH 1048 00:40:41,989 --> 00:40:43,624 PHYSICAL HEALTH, RUNNING, 1049 00:40:43,624 --> 00:40:45,392 TRAINING FOR RACES, GOING TO THE 1050 00:40:45,392 --> 00:40:49,096 GYM IN CONGRESS, TAKING GROUP 1051 00:40:49,096 --> 00:40:50,831 FITNESS CLASSES, YOGA AND 1052 00:40:50,831 --> 00:40:51,932 STRENGTH TRAINING, EATING 1053 00:40:51,932 --> 00:40:52,266 HEALTHY. 1054 00:40:52,266 --> 00:40:53,934 I NEVER MISSED MY ANNUAL 1055 00:40:53,934 --> 00:40:55,903 PHYSICALS WITH MY PRIMARY CARE 1056 00:40:55,903 --> 00:40:56,870 PHYSICIAN, OTHER THAN MAYBE 1057 00:40:56,870 --> 00:40:59,139 NEEDING TO LOSE A FEW POUNDS I 1058 00:40:59,139 --> 00:40:59,973 WAS IN EXCELLENT HEALTH. 1059 00:40:59,973 --> 00:41:02,509 WHAT I HAD NOT ANTICIPATED WERE 1060 00:41:02,509 --> 00:41:03,443 INVISIBLE WAYS MY BRAIN WASN'T 1061 00:41:03,443 --> 00:41:06,046 HEALTHY AND HOW IT COULD SO 1062 00:41:06,046 --> 00:41:07,181 QUICKLY AND DRAMATICALLY 1063 00:41:07,181 --> 00:41:08,815 SEVERELY IMPACT MY OVERALL 1064 00:41:08,815 --> 00:41:10,617 HEALTH AND WELL-BEING. 1065 00:41:10,617 --> 00:41:12,653 WITH THE BENEFIT OF HINDSIGHT I 1066 00:41:12,653 --> 00:41:14,821 FIRST BEGAN EXPERIENCING 1067 00:41:14,821 --> 00:41:16,056 NOTICEABLE SYMPTOMS IN 2019, I 1068 00:41:16,056 --> 00:41:17,224 DIDN'T RECOGNIZE THEM AS 1069 00:41:17,224 --> 00:41:19,159 SYMPTOMS OF A PROGRESSIVE 1070 00:41:19,159 --> 00:41:20,861 NEUROLOGICAL DISEASE UNTIL MUCH 1071 00:41:20,861 --> 00:41:21,328 LATER. 1072 00:41:21,328 --> 00:41:23,130 MY TOES WOULD CLENCH AND CURL 1073 00:41:23,130 --> 00:41:23,530 INWARD. 1074 00:41:23,530 --> 00:41:25,098 IT WAS AND STILL IS MORE 1075 00:41:25,098 --> 00:41:26,733 PRONOUNCED IN MY RIGHT FOOT, 1076 00:41:26,733 --> 00:41:28,969 WORSE AT NIGHT WHEN I LAY IN BED 1077 00:41:28,969 --> 00:41:32,539 TRYING TO FALL ASLEEP. 1078 00:41:32,539 --> 00:41:34,341 TWO BANDANNAS I WOULD PUT 1079 00:41:34,341 --> 00:41:36,910 BETWEEN MY FEET TO FALL ASLEEP. 1080 00:41:36,910 --> 00:41:41,148 I EXPLAINED IT AS NATURAL RESULT 1081 00:41:41,148 --> 00:41:43,016 OF WALKING TENS OF THOUSANDS OF 1082 00:41:43,016 --> 00:41:44,518 STEPS DAILY IN LESS THAN 1083 00:41:44,518 --> 00:41:45,419 SUPPORTIVE SHOES. 1084 00:41:45,419 --> 00:41:46,587 AS MONTHS PASSED MY GAIT BECAME 1085 00:41:46,587 --> 00:41:47,821 MORE OF A SHUFFLE. 1086 00:41:47,821 --> 00:41:50,390 I WOULD HIT THE TOE BOX WITH MY 1087 00:41:50,390 --> 00:41:52,659 SHOES ON UNEVEN SIDEWALKS ON 1088 00:41:52,659 --> 00:41:54,561 CAPITOL HILL, THERE ARE A LOT OF 1089 00:41:54,561 --> 00:41:55,762 THOSE ON CAPITOL HILL. 1090 00:41:55,762 --> 00:41:58,565 I WAS USUALLY ABLE TO REGAIN MY 1091 00:41:58,565 --> 00:42:00,400 BALANCE I REMEMBER ONE OCCASION 1092 00:42:00,400 --> 00:42:02,502 WHEN I TRIPPED ON A BRICK 1093 00:42:02,502 --> 00:42:04,504 STICKING UP ONE-HALF TO 1094 00:42:04,504 --> 00:42:05,739 THREE-QUARTERS OF AN INCH, I 1095 00:42:05,739 --> 00:42:07,608 WENT FLYING, SKINNING MY PALMS 1096 00:42:07,608 --> 00:42:09,476 AND KNEES AS I FELL TO THE 1097 00:42:09,476 --> 00:42:10,844 GROUND. 1098 00:42:10,844 --> 00:42:14,014 I'VE NEVER BEEN GRACEFUL BUT 1099 00:42:14,014 --> 00:42:17,284 EXPLAINED THAT AS BEING LAZY OR 1100 00:42:17,284 --> 00:42:17,951 TIRED. 1101 00:42:17,951 --> 00:42:21,154 IT WAS LATE SUMMER, EARLY FALL 1102 00:42:21,154 --> 00:42:21,688 OF 2020. 1103 00:42:21,688 --> 00:42:25,692 COVID-19 PANDEMIC WAS RAGING. 1104 00:42:25,692 --> 00:42:29,396 I WAS STRESSED KEEPING UP WITH 1105 00:42:29,396 --> 00:42:30,330 REPRESENTING CONSTITUENTS AND 1106 00:42:30,330 --> 00:42:31,598 ENSURING MY KIDS WERE INVOLVED 1107 00:42:31,598 --> 00:42:38,238 WITH VIRTUAL SCHOOL AND 1108 00:42:38,238 --> 00:42:38,572 REELECTION. 1109 00:42:38,572 --> 00:42:40,741 TWO MORE SYMPTOMS I THOUGHT WERE 1110 00:42:40,741 --> 00:42:44,111 DUE TO STRESS BUT LEARNED ARE 1111 00:42:44,111 --> 00:42:46,113 SYMPTOMS OF PARKINSON'S, THE 1112 00:42:46,113 --> 00:42:47,914 FIRST WAS ONSET OF DYSTONIA IN 1113 00:42:47,914 --> 00:42:52,786 MY FEET AND MY HANDS BALLED INTO 1114 00:42:52,786 --> 00:42:54,187 FISTS, EVERY NIGHT WHEN I TRIED 1115 00:42:54,187 --> 00:42:56,390 TO GO TO SLEEP I WENT FOR A WALK 1116 00:42:56,390 --> 00:43:01,795 WITH MY HUSBAND, HE NOTICED MY 1117 00:43:01,795 --> 00:43:02,229 FISTS. 1118 00:43:02,229 --> 00:43:06,333 HE SAID, OOH, I'M SO ANGRY AND 1119 00:43:06,333 --> 00:43:08,201 BALLED HIS HANDS INTO FITS 1120 00:43:08,201 --> 00:43:10,103 IMITATING ME AND LAUGHING. 1121 00:43:10,103 --> 00:43:14,074 MY ARMS DIDN'T SWING LIKE THEY 1122 00:43:14,074 --> 00:43:14,675 USED TO. 1123 00:43:14,675 --> 00:43:15,442 UNFORTUNATELY THERE WAS NOTHING 1124 00:43:15,442 --> 00:43:17,678 I COULD DO TO STOP MY HANDS FROM 1125 00:43:17,678 --> 00:43:24,318 MAKING FISTS WHEN I WENT TO BED. 1126 00:43:24,318 --> 00:43:25,519 SECOND AND MORE DISTURBING 1127 00:43:25,519 --> 00:43:28,021 SYMPTOM WAS CHANGE IN MY VOICE. 1128 00:43:28,021 --> 00:43:30,324 I HAD BEEN DOING TOWN HALLS ON 1129 00:43:30,324 --> 00:43:32,492 ZOOM ON TOPICS, I REMEMBER THAT 1130 00:43:32,492 --> 00:43:33,527 MY VOICE STARTED WAVERING. 1131 00:43:33,527 --> 00:43:36,730 IT WAS AS IF I WERE SCARED OR 1132 00:43:36,730 --> 00:43:38,231 FREEZING COLD AND SHIVERING. 1133 00:43:38,231 --> 00:43:39,866 IT FREAKED ME OUT. 1134 00:43:39,866 --> 00:43:41,034 THAT DOESN'T HELP WHEN YOU'RE 1135 00:43:41,034 --> 00:43:42,736 EXPERIENCING AN ISSUE WITH YOUR 1136 00:43:42,736 --> 00:43:43,103 VOICE. 1137 00:43:43,103 --> 00:43:46,206 MY CHIEF OF STAFF AND 1138 00:43:46,206 --> 00:43:47,541 COMMUNICATIONS DIRECTOR WERE -- 1139 00:43:47,541 --> 00:43:50,310 I'D SAY THEY WERE CONCERNED. 1140 00:43:50,310 --> 00:43:51,912 MY VOICE NEVER ACTED UP IN THAT 1141 00:43:51,912 --> 00:43:54,548 WAY AGAIN BUT IT WAS SCARY, I 1142 00:43:54,548 --> 00:43:56,683 FELT I WAS LOSING CONTROL OF MY 1143 00:43:56,683 --> 00:43:56,883 BODY. 1144 00:43:56,883 --> 00:43:59,720 AS TIME PASSED I NOTICED I HAD 1145 00:43:59,720 --> 00:44:00,821 TROUBLE SPEAKING LOUDLY AND 1146 00:44:00,821 --> 00:44:01,088 SLOWLY. 1147 00:44:01,088 --> 00:44:03,857 AFTER A TOWN HALL IN A 1148 00:44:03,857 --> 00:44:04,658 RETIREMENT COMMUNITY DISTRICT 1149 00:44:04,658 --> 00:44:05,726 ONE OF THE RESIDENTS APPROACHED 1150 00:44:05,726 --> 00:44:08,028 ME AND ASKED IF I HAD A SPEECH 1151 00:44:08,028 --> 00:44:08,662 IMPEDIMENT BECAUSE SHE AND 1152 00:44:08,662 --> 00:44:10,897 OTHERS IN THE ROOM SHE SAID HAD 1153 00:44:10,897 --> 00:44:12,199 A DIFFICULT TIME UNDERSTANDING 1154 00:44:12,199 --> 00:44:13,734 MY FAST TALKING. 1155 00:44:13,734 --> 00:44:16,503 AFTER THAT EPISODE I COMPLETED 1156 00:44:16,503 --> 00:44:17,270 THE PARKINSON'S SPEECH PROGRAM 1157 00:44:17,270 --> 00:44:19,706 BUT SADLY IT WAS NO MATCH FOR 1158 00:44:19,706 --> 00:44:20,006 PSP. 1159 00:44:20,006 --> 00:44:22,142 I HAD ENOUGH SENSE TO GOOGLE MY 1160 00:44:22,142 --> 00:44:25,011 SYMPTOMS, I TYPED WHY DO MY TOES 1161 00:44:25,011 --> 00:44:27,314 CLENCH AND CURL INTO THE GOOGLE 1162 00:44:27,314 --> 00:44:29,583 SEARCH WINDOW. 1163 00:44:29,583 --> 00:44:32,386 THE ANSWER, A COMMON SYMPTOM OF 1164 00:44:32,386 --> 00:44:33,553 EARLY ONSET PARKINSON'S DISEASE. 1165 00:44:33,553 --> 00:44:34,588 I CAN'T HAVE PARKINSON'S 1166 00:44:34,588 --> 00:44:35,055 DISEASE. 1167 00:44:35,055 --> 00:44:36,923 THAT'S A DISEASE OLD MEN GET. 1168 00:44:36,923 --> 00:44:42,496 THE MORE I READ, THE MORE MY 1169 00:44:42,496 --> 00:44:44,097 MALADIES WERE SYMPTOMS OF P.D. 1170 00:44:44,097 --> 00:44:46,800 I MADE AN APPOINTMENT WITH MY 1171 00:44:46,800 --> 00:44:47,901 PRIMARY CARE DOCTOR. 1172 00:44:47,901 --> 00:44:50,904 WHEN SHE ASKED WHAT MADE 1173 00:44:50,904 --> 00:44:52,305 IMMEDIATE COME, I WAS PRETTY 1174 00:44:52,305 --> 00:44:53,273 SURE I HAD P.D. 1175 00:44:53,273 --> 00:44:54,908 SHE DIDN'T TELL ME IT WAS ALL IN 1176 00:44:54,908 --> 00:44:57,177 MY HEAD OR UNLIKELY THAT I HAD 1177 00:44:57,177 --> 00:44:57,344 P.D. 1178 00:44:57,344 --> 00:45:00,380 INSTEAD SHE HAD ME GO THROUGH 1179 00:45:00,380 --> 00:45:03,550 BATTERY OF TESTS NOW FAMILIAR, 1180 00:45:03,550 --> 00:45:05,519 HUNGRY COCKATOO, JAZZ HAND, THE 1181 00:45:05,519 --> 00:45:08,355 WHOLE DRILL, REFERRED ME TO A 1182 00:45:08,355 --> 00:45:08,789 NEUROLOGIST. 1183 00:45:08,789 --> 00:45:10,357 IT TOOK FOUR MONTHS TO GET AN 1184 00:45:10,357 --> 00:45:12,359 INITIAL APPOINTMENT WITH A 1185 00:45:12,359 --> 00:45:13,760 NEUROLOGIST, IT WAS VIRTUAL. 1186 00:45:13,760 --> 00:45:15,395 MY SECOND APPOINTMENT TOOK PLACE 1187 00:45:15,395 --> 00:45:16,696 ABOUT SIX WEEKS AFTER THAT. 1188 00:45:16,696 --> 00:45:19,032 WHAT FOLLOWED WAS A CONTINUING 1189 00:45:19,032 --> 00:45:21,168 PATTERN OF MY NEUROLOGIST 1190 00:45:21,168 --> 00:45:22,369 PRESCRIBING A NEW MEDICATION, 1191 00:45:22,369 --> 00:45:24,638 AND MY EXPERIENCING LITTLE TO NO 1192 00:45:24,638 --> 00:45:25,739 BENEFIT AND INCREASING DOSAGES 1193 00:45:25,739 --> 00:45:27,274 UNTIL I WAS TAKING THE MAXIMUM 1194 00:45:27,274 --> 00:45:28,608 RECOMMENDED DOSE. 1195 00:45:28,608 --> 00:45:31,645 WE COULD START OVER WITH 1196 00:45:31,645 --> 00:45:34,347 MEDICATION. 1197 00:45:34,347 --> 00:45:37,284 WE DID THIS WITH THREE BEFORE 1198 00:45:37,284 --> 00:45:46,660 SHE BROKE OUT THE GOOD STUFF, 1199 00:45:46,660 --> 00:45:48,195 LEFT LEVIDOPA, I TOOK ONE HALF, 1200 00:45:48,195 --> 00:45:55,402 IT WAS AS IF THE ANGELS IN 1201 00:45:55,402 --> 00:45:56,403 HEAVEN SANG HALLELUIA FOR ME. 1202 00:45:56,403 --> 00:45:58,672 I THOUGHT WHY DIDN'T MY DOCTOR 1203 00:45:58,672 --> 00:46:00,474 LET ME TRY THIS SOONER? 1204 00:46:00,474 --> 00:46:04,845 IT FELT GOOD BECAUSE MY BODY'S 1205 00:46:04,845 --> 00:46:06,112 ROBUST RESPONSE VALIDATED BY 1206 00:46:06,112 --> 00:46:07,481 DIAGNOSIS, SO I BELIEVED. 1207 00:46:07,481 --> 00:46:09,616 AROUND THIS TIME I STARTED 1208 00:46:09,616 --> 00:46:11,585 THINKING I COULD BENEFIT FROM A 1209 00:46:11,585 --> 00:46:15,522 SUPPORT NETWORK OF PEOPLE WHO 1210 00:46:15,522 --> 00:46:15,856 UNDERSTOOD. 1211 00:46:15,856 --> 00:46:18,124 THE WIFE OF A COLLEAGUE FROM THE 1212 00:46:18,124 --> 00:46:19,125 GENERAL ASSEMBLY WAS DIAGNOSED 1213 00:46:19,125 --> 00:46:21,061 NOT LONG BEFORE, I CALLED HIM. 1214 00:46:21,061 --> 00:46:23,730 I HAD TOLD MY HUSBAND, CHIEF OF 1215 00:46:23,730 --> 00:46:29,703 STAFF ONLY, MY SIBLINGS AND 1216 00:46:29,703 --> 00:46:34,241 SPOUSES BUT NOT MY MOTHER OR 1217 00:46:34,241 --> 00:46:34,875 KIDS, CONGRESSIONAL LEADERSHIP 1218 00:46:34,875 --> 00:46:37,010 OR CONSTITUENTS IN THE FEAR I 1219 00:46:37,010 --> 00:46:41,481 WOULD BE OUTED. 1220 00:46:41,481 --> 00:46:44,584 MY COLLEAGUE'S WIFE FACE-TIMED 1221 00:46:44,584 --> 00:46:46,586 ME THAT NIGHT, SHE PARTICIPATES 1222 00:46:46,586 --> 00:46:49,155 IN A SUPPORT GROUP OF HIGH 1223 00:46:49,155 --> 00:46:52,893 ACHIEVING WOMEN WITH P.D., MOST 1224 00:46:52,893 --> 00:46:55,328 IN NYC, I WASN'T READY TO COME 1225 00:46:55,328 --> 00:46:56,730 OUT, SHE ASSEMBLED A CORE GROUP 1226 00:46:56,730 --> 00:46:58,965 OF CLOSE FRIENDS IN THE GROUP. 1227 00:46:58,965 --> 00:47:03,570 THEY INCLUDED A "NEW YORK TIMES" 1228 00:47:03,570 --> 00:47:06,773 BEST-SELLING SHORE, NURSE 1229 00:47:06,773 --> 00:47:08,375 PRACTITIONER, A FORMER CHAMPION 1230 00:47:08,375 --> 00:47:13,113 TENNIS PLAYER, IT'S A BIG DEAL. 1231 00:47:13,113 --> 00:47:14,347 THESE WOMEN WERE ALSO 1232 00:47:14,347 --> 00:47:14,848 ACCOMPLISHED. 1233 00:47:14,848 --> 00:47:16,283 SO TOGETHER AND KIND AND 1234 00:47:16,283 --> 00:47:17,851 WELCOMING, I CAME TO BELIEVE IF 1235 00:47:17,851 --> 00:47:19,219 THEY COULD GO ON LIVING AND 1236 00:47:19,219 --> 00:47:20,487 WORKING, HAVING FUN AND 1237 00:47:20,487 --> 00:47:21,788 LAUGHING, I COULD TOO. 1238 00:47:21,788 --> 00:47:23,990 I CAME TO REALIZE I HAD A UNIQUE 1239 00:47:23,990 --> 00:47:25,592 PLATFORM FROM WHICH I COULD 1240 00:47:25,592 --> 00:47:27,027 HOPEFULLY RAISE AWARENESS ABOUT 1241 00:47:27,027 --> 00:47:27,894 WHAT PARKINSON'S DISEASE IS. 1242 00:47:27,894 --> 00:47:30,463 AND WHAT IT IS NOT. 1243 00:47:30,463 --> 00:47:33,400 I ANNOUNCED MY DIAGNOSIS TO THE 1244 00:47:33,400 --> 00:47:34,701 PUBLIC ON APRIL 12, 2023, ON 1245 00:47:34,701 --> 00:47:35,902 WORLD PARKINSON'S DISEASE DAY, 1246 00:47:35,902 --> 00:47:37,103 IN A VIDEO MESSAGE, I VOWED TO 1247 00:47:37,103 --> 00:47:38,572 PUT IN THE WORK TO MANAGE 1248 00:47:38,572 --> 00:47:40,707 SYMPTOMS AND DO THE JOB I LOVED 1249 00:47:40,707 --> 00:47:42,642 OF REPRESENTING MY COMMUNITY IN 1250 00:47:42,642 --> 00:47:43,043 CONGRESS. 1251 00:47:43,043 --> 00:47:47,614 I WAS GOING THROUGH PHOTOS ON MY 1252 00:47:47,614 --> 00:47:49,049 PHONE AND CAME ACROSS ONE OF A 1253 00:47:49,049 --> 00:47:51,851 SQUIRREL ON THE MALL TAKEN TWO 1254 00:47:51,851 --> 00:47:54,921 YEARS AGO, JUNE 2023. 1255 00:47:54,921 --> 00:47:57,724 I HAD TAKEN WHILE ON A RUN AFTER 1256 00:47:57,724 --> 00:47:59,392 6:00 A.M. BEFORE A LONG DAY OF 1257 00:47:59,392 --> 00:48:00,794 HEARINGS AND VOTES. 1258 00:48:00,794 --> 00:48:03,096 RUNS LIKE THIS WERE A PART OF 1259 00:48:03,096 --> 00:48:04,965 THE EXERCISE ROUTINE I UNDERTOOK 1260 00:48:04,965 --> 00:48:06,967 TO HELP MANAGE MY SYMPTOMS. 1261 00:48:06,967 --> 00:48:08,335 THAT MOMENT STOOD OUT BECAUSE 1262 00:48:08,335 --> 00:48:10,236 WHILE I WAS STILL ABLE TO MOVE 1263 00:48:10,236 --> 00:48:11,671 AND RUN AT THE TIME, ALMOST 1264 00:48:11,671 --> 00:48:13,506 EXACTLY TWO YEARS AGO, I HAD 1265 00:48:13,506 --> 00:48:15,208 BEGUN NOTICING THE WAYS MY 1266 00:48:15,208 --> 00:48:16,176 MEDICATIONS WEREN'T WORKING AS 1267 00:48:16,176 --> 00:48:17,911 WELL AS THEY USED TO AND IT 1268 00:48:17,911 --> 00:48:19,079 SEEMED MY SYMPTOMS WERE 1269 00:48:19,079 --> 00:48:20,246 PROGRESSING RAPIDLY AND I WAS 1270 00:48:20,246 --> 00:48:22,549 FEELING WORSE THAN THE OTHER 1271 00:48:22,549 --> 00:48:23,383 WOMEN WITH PARKINSON'S IN THE 1272 00:48:23,383 --> 00:48:24,351 SUPPORT GROUP. 1273 00:48:24,351 --> 00:48:26,219 I KNEW WELL THE IMPORTANCE OF 1274 00:48:26,219 --> 00:48:27,654 LISTENING TO MY BODY AND SOUGHT 1275 00:48:27,654 --> 00:48:31,591 OUT A SECOND AND THIRD MILLION 1276 00:48:31,591 --> 00:48:33,126 OPINION. 1277 00:48:33,126 --> 00:48:34,561 AFTER AN IMPROMPTU CURSORY EXAM 1278 00:48:34,561 --> 00:48:39,366 IN MY CAPITOL HILL OFFICE, IT 1279 00:48:39,366 --> 00:48:41,835 BECAME CLEAR TELL TALE SIGN OF 1280 00:48:41,835 --> 00:48:43,937 MID-BRAIN ATROPHY IN THE SHAPE 1281 00:48:43,937 --> 00:48:46,406 OF A HUMMINGBIRDS ON THE MRI 1282 00:48:46,406 --> 00:48:49,442 SCAN I WAS BATTLING A MUCH MORE 1283 00:48:49,442 --> 00:48:56,583 SEVERE AND FASTER PROGRESSING 1284 00:48:56,583 --> 00:49:00,353 FORM, ATYPICAL PARKINSONISM. 1285 00:49:00,353 --> 00:49:03,023 PSP HAS NO CURE AND TREATMENT 1286 00:49:03,023 --> 00:49:03,790 OPTIONS. 1287 00:49:03,790 --> 00:49:05,392 WE HAVE TO BETTER UNDERSTAND, 1288 00:49:05,392 --> 00:49:08,461 DIAGNOSE, TREAT, AND I HOPE ONE 1289 00:49:08,461 --> 00:49:10,997 DAY CURE AND PREVENT THESE 1290 00:49:10,997 --> 00:49:11,798 TERRIBLE DISEASES. 1291 00:49:11,798 --> 00:49:15,201 MY JOURNEY TOOK THE COURSE OF 1292 00:49:15,201 --> 00:49:16,369 THREE YEARS, MONTHS OF 1293 00:49:16,369 --> 00:49:18,438 MEDICATIONS, RULING OUT A 1294 00:49:18,438 --> 00:49:19,739 HANDFUL OF OTHER DISEASES, 1295 00:49:19,739 --> 00:49:21,841 OPINION AFTER OPINION, TEST 1296 00:49:21,841 --> 00:49:22,142 AFTER TEST. 1297 00:49:22,142 --> 00:49:23,743 AND EVERY STEP OF THE WAY, 1298 00:49:23,743 --> 00:49:25,645 THROUGH NO FAULT OF THE 1299 00:49:25,645 --> 00:49:27,480 INCREDIBLE MEDICAL SUPPORT I 1300 00:49:27,480 --> 00:49:28,815 RECEIVED, I WAS LEFT WITH FEW 1301 00:49:28,815 --> 00:49:30,116 ANSWERS TO THE MOST IMPORTANT 1302 00:49:30,116 --> 00:49:31,084 QUESTIONS THAT EVERY PERSON 1303 00:49:31,084 --> 00:49:32,485 ASKED WHEN GOING THROUGH AN 1304 00:49:32,485 --> 00:49:33,553 ORDEAL LIKE THIS. 1305 00:49:33,553 --> 00:49:35,088 WHAT IS WRONG WITH ME? 1306 00:49:35,088 --> 00:49:36,256 WHERE DID THIS COME FROM? 1307 00:49:36,256 --> 00:49:37,157 WHY ME? 1308 00:49:37,157 --> 00:49:38,892 AND HOW CAN I GET BETTER? 1309 00:49:38,892 --> 00:49:42,328 IT TOOK ALMOST THREE YEARS TO 1310 00:49:42,328 --> 00:49:44,130 FIGURE OUT WHAT WAS WRONG. 1311 00:49:44,130 --> 00:49:50,036 I CONSIDER MYSELF A LUCKY ONE 1312 00:49:50,036 --> 00:49:52,338 WITH PSPP, WITH CHARACTERISTICS 1313 00:49:52,338 --> 00:49:57,177 OF PARKINSON'S, MY BODY STILL 1314 00:49:57,177 --> 00:49:58,445 RESPONDS TO LEVIDOPA. 1315 00:49:58,445 --> 00:49:59,946 I HAVE MY SUSPICIONS I'LL NEVER 1316 00:49:59,946 --> 00:50:02,716 KNOW IF IT CAME FROM SOME ROGUE 1317 00:50:02,716 --> 00:50:06,586 GENE OR WAS DUE TO EXPOSURE TO 1318 00:50:06,586 --> 00:50:07,754 SOME TOXIN OR SOMETHING ELSE. 1319 00:50:07,754 --> 00:50:10,423 I GOT MY HOPES UP ON MORE THAN 1320 00:50:10,423 --> 00:50:12,726 ONE OCCASION AFTER HEARING ABOUT 1321 00:50:12,726 --> 00:50:13,626 THIS OR THAT MIRACLE DRUG I'VE 1322 00:50:13,626 --> 00:50:15,995 SEEN ENOUGH TO KNOW NO 1323 00:50:15,995 --> 00:50:16,830 MEDICATION OR TREATMENT REGIMEN 1324 00:50:16,830 --> 00:50:19,365 RIGHT NOW IS GOING TO MAKE IT GO 1325 00:50:19,365 --> 00:50:19,933 AWAY. 1326 00:50:19,933 --> 00:50:22,769 I'VE BEEN ASKING MYSELF THESE 1327 00:50:22,769 --> 00:50:24,704 AND MANY OTHER QUESTIONS FOR TWO 1328 00:50:24,704 --> 00:50:27,040 YEARS TO NO AVAIL THERE'S ONE 1329 00:50:27,040 --> 00:50:28,308 ANSWER WHICH PRESENTED LOUDLY 1330 00:50:28,308 --> 00:50:30,610 AND CLEARLY, WE NEED TO DO 1331 00:50:30,610 --> 00:50:30,977 BETTER. 1332 00:50:30,977 --> 00:50:33,079 MORE THAN 50 MILLION PEOPLE 1333 00:50:33,079 --> 00:50:35,615 WORLDWIDE SUFFER FROM 1334 00:50:35,615 --> 00:50:36,950 NEURODEGENERATIVE DISEASES LIKE 1335 00:50:36,950 --> 00:50:38,585 PARKINSON'S, ALS, ALZHEIMER'S, 1336 00:50:38,585 --> 00:50:43,990 M.S., CONDITIONS LIKE MY PSP. 1337 00:50:43,990 --> 00:50:45,692 SO MANY QUESTIONS ARE SHARED BY 1338 00:50:45,692 --> 00:50:48,394 50 MILLION PEOPLE. 1339 00:50:48,394 --> 00:50:49,329 WE NEED TO DO BETTER. 1340 00:50:49,329 --> 00:50:51,831 I'VE MADE IT A MISSION OVER TWO 1341 00:50:51,831 --> 00:50:52,999 YEARS, I RECOGNIZE UNIQUE 1342 00:50:52,999 --> 00:50:55,335 POSITION I HAD AS A MEMBER AND 1343 00:50:55,335 --> 00:50:56,903 NOW AS A FORMER MEMBER OF 1344 00:50:56,903 --> 00:50:58,605 CONGRESS AND SPOTLIGHT I HAD ON 1345 00:50:58,605 --> 00:51:01,007 ME AND WANTED TO MAKE THE MOST 1346 00:51:01,007 --> 00:51:02,308 OF IT. 1347 00:51:02,308 --> 00:51:03,877 YOU AN UNEXPECTED SIDE EFFECT IS 1348 00:51:03,877 --> 00:51:04,978 MY APPEARANCE. 1349 00:51:04,978 --> 00:51:06,646 BEFORE I LEFT CONGRESS I HAD A 1350 00:51:06,646 --> 00:51:07,680 DOZEN COLLEAGUES TELL ME HOW 1351 00:51:07,680 --> 00:51:08,982 BRAVE I WAS. 1352 00:51:08,982 --> 00:51:11,618 I DIDN'T UNDERSTAND WHY THAT WAS 1353 00:51:11,618 --> 00:51:12,952 THE ADJECTIVE USED TO DESCRIBE 1354 00:51:12,952 --> 00:51:13,720 ME. 1355 00:51:13,720 --> 00:51:15,688 UNTIL I SAW MY COVER PHOTO ON 1356 00:51:15,688 --> 00:51:18,024 THE MARCH ISSUE OF BRAIN AND 1357 00:51:18,024 --> 00:51:21,127 "LIFE" MAGAZINE. 1358 00:51:21,127 --> 00:51:22,896 MEMBERS OF CONGRESS ARE 1359 00:51:22,896 --> 00:51:23,997 NOTORIOUSLY VAIN, MALE 1360 00:51:23,997 --> 00:51:25,131 COLLEAGUES COLOR THEIR HAIR 1361 00:51:25,131 --> 00:51:27,300 RATHER THAN SHOW GRAYS TO 1362 00:51:27,300 --> 00:51:28,034 CONSTITUENTS. 1363 00:51:28,034 --> 00:51:29,169 I WASN'T VAIN PER SE, I USED TO 1364 00:51:29,169 --> 00:51:31,471 TAKE A LOT OF PRIDE IN MY 1365 00:51:31,471 --> 00:51:33,907 APPEARANCE. 1366 00:51:33,907 --> 00:51:36,209 THAT WENT OUT THE WINDOW IN 2023 1367 00:51:36,209 --> 00:51:46,653 WHEN I LACKED THE DEXTERITY TO 1368 00:51:46,653 --> 00:51:48,721 APPLY MAKEUP AND BY 2024 COULD 1369 00:51:48,721 --> 00:51:52,525 NO LONGER BLOW OUT MY SPARE. 1370 00:51:52,525 --> 00:51:53,993 I'VE LOST 40 POUNDS AND, NO, I 1371 00:51:53,993 --> 00:51:54,894 WASN'T TRYING TO. 1372 00:51:54,894 --> 00:51:58,531 I WAS PLEASED TO LOSE THE FIRST 1373 00:51:58,531 --> 00:52:02,468 10 OR 15 I DIDN'T NEED OR WANT 1374 00:52:02,468 --> 00:52:04,304 TO LOSE THE NEXT 20 TO 30, I 1375 00:52:04,304 --> 00:52:05,505 FEEL LIKE A SCARECROW. 1376 00:52:05,505 --> 00:52:07,373 MY COVER PHOTO IS NOT A BAD 1377 00:52:07,373 --> 00:52:09,542 PICTURE BUT I SEE EVERYTHING PSP 1378 00:52:09,542 --> 00:52:10,610 HAS DONE TO ME. 1379 00:52:10,610 --> 00:52:11,411 THAT'S THE POINT. 1380 00:52:11,411 --> 00:52:14,581 I USED TO BE A HOTTIE BUT NOW I 1381 00:52:14,581 --> 00:52:20,954 CAN ADD THAT TO THE LIST OF PSP 1382 00:52:20,954 --> 00:52:25,191 THINGS ROBBED FROM ME. 1383 00:52:25,191 --> 00:52:29,128 I CHAMPIONED AN ACT TO BRING KEY 1384 00:52:29,128 --> 00:52:35,101 STAKEHOLDERS TOGETHER WITH 1385 00:52:35,101 --> 00:52:38,738 PRIVATE SECTOR PRACTITIONERS AND 1386 00:52:38,738 --> 00:52:41,641 CAREGIVERS TO TREAT INCLUDING 1387 00:52:41,641 --> 00:52:41,808 PSP. 1388 00:52:41,808 --> 00:52:44,677 I MET WITH DEMOCRATIC AND 1389 00:52:44,677 --> 00:52:45,912 REPUBLICAN LEADS OF THE BILL, TO 1390 00:52:45,912 --> 00:52:47,714 ASK HOW I COULD HELP LEND MY 1391 00:52:47,714 --> 00:52:51,851 PERSONAL STORY TO THE BIPARTISAN 1392 00:52:51,851 --> 00:52:52,085 EFFORT. 1393 00:52:52,085 --> 00:52:53,753 IF YOU'VE BEEN PAYING ATTENTION 1394 00:52:53,753 --> 00:52:55,188 TO CONGRESS LATELY, YOU KNOW 1395 00:52:55,188 --> 00:52:58,725 THAT WORD, BIPARTISAN, IS A RARE 1396 00:52:58,725 --> 00:52:59,125 ONE NOWADAYS. 1397 00:52:59,125 --> 00:53:00,059 WE CERTAINLY ENCOUNTERED BUMPS 1398 00:53:00,059 --> 00:53:01,895 IN THE ROAD WITH THIS BILL. 1399 00:53:01,895 --> 00:53:03,930 THE BILL VERY NEARLY DIED IN 1400 00:53:03,930 --> 00:53:07,700 COMMITTEE, AS MANY BILLS DO AS A 1401 00:53:07,700 --> 00:53:08,234 CASUALTY OF A PROXY BATTLE 1402 00:53:08,234 --> 00:53:09,769 BETWEEN REPUBLICANS AND 1403 00:53:09,769 --> 00:53:10,603 DEMOCRATS OVER A CULTURE WAR 1404 00:53:10,603 --> 00:53:13,573 ISSUE THAT DIDN'T IMPACT THE 1405 00:53:13,573 --> 00:53:15,742 UNDERLYING BILL MUCH. 1406 00:53:15,742 --> 00:53:20,246 IT TOOK MULTIPLE AVENUES OF 1407 00:53:20,246 --> 00:53:21,247 OUTREACH LIKE TEXTS, LETTERS, 1408 00:53:21,247 --> 00:53:24,884 BEFORE WE WERE ABLE TO COME TO 1409 00:53:24,884 --> 00:53:25,485 CONSENSUS. 1410 00:53:25,485 --> 00:53:28,288 I WAS NOT AFRAID TO PULL OUT ALL 1411 00:53:28,288 --> 00:53:31,057 THE SYMPTOMS, PULL ON HEART 1412 00:53:31,057 --> 00:53:33,893 STRINGS TO BRING PEOPLE 1413 00:53:33,893 --> 00:53:34,394 TOGETHER. 1414 00:53:34,394 --> 00:53:37,297 I PLAYED THE "I'M DYING AND THIS 1415 00:53:37,297 --> 00:53:38,298 IS PRIORITY" CARD. 1416 00:53:38,298 --> 00:53:40,033 COLLEAGUES RESPONDED WITH WORDS 1417 00:53:40,033 --> 00:53:41,668 OF COMFORT AND ENCOURAGEMENT AND 1418 00:53:41,668 --> 00:53:44,504 MOST IMPORTANTLY WITH COMMITMENT 1419 00:53:44,504 --> 00:53:45,004 TO TAKE ACTION. 1420 00:53:45,004 --> 00:53:46,039 WHAT I FOUND MOST PRICING WAS 1421 00:53:46,039 --> 00:53:47,941 THAT AS I SHARED MY PERSONAL 1422 00:53:47,941 --> 00:53:50,209 STRUGGLE IN SUPPORT OF THE 1423 00:53:50,209 --> 00:53:51,477 NATIONAL PLAN MY COLLEAGUES 1424 00:53:51,477 --> 00:53:53,880 CONFIDED SIMILAR STORIES ABOUT A 1425 00:53:53,880 --> 00:53:54,681 RELATIVE, PARENT, FRIENDS, WHO 1426 00:53:54,681 --> 00:53:56,616 HAD FACED OR WAS FACING A 1427 00:53:56,616 --> 00:53:57,550 SIMILAR BATTLE. 1428 00:53:57,550 --> 00:53:58,952 I SHOULD NOT HAVE BEEN SURPRISED 1429 00:53:58,952 --> 00:54:02,255 AS PARKINSON'S DISEASE IS NOW 1430 00:54:02,255 --> 00:54:03,690 THE FASTEST GROWING 1431 00:54:03,690 --> 00:54:06,960 NEURODEGENERATIVE DISEASE IN 1432 00:54:06,960 --> 00:54:07,727 AMERICA. 1433 00:54:07,727 --> 00:54:09,028 SEEING THE FRUSTRATION OF NOT 1434 00:54:09,028 --> 00:54:10,430 HAVING ANSWERS TO THE SAME 1435 00:54:10,430 --> 00:54:12,265 QUESTIONS I ASKED MYSELF AFTER 1436 00:54:12,265 --> 00:54:13,833 MY DIAGNOSIS MOTIVATED THEM NOT 1437 00:54:13,833 --> 00:54:15,668 TO WALK AWAY FROM THE 1438 00:54:15,668 --> 00:54:16,402 LIFE-CHANGING LEGISLATION AND 1439 00:54:16,402 --> 00:54:20,206 THEY HELPED US PASS IN THE HOUSE 1440 00:54:20,206 --> 00:54:21,841 BY 407-9. 1441 00:54:21,841 --> 00:54:24,577 FOLLOWING A UNANIMOUS PASSAGE IN 1442 00:54:24,577 --> 00:54:25,878 SENATE I JOINED PRESIDENT BIDEN 1443 00:54:25,878 --> 00:54:29,415 IN THE OVAL OFFICE FOR THE BILL, 1444 00:54:29,415 --> 00:54:30,516 A SPECIAL MOMENT. 1445 00:54:30,516 --> 00:54:33,286 I LIVED IN D.C. MY ENTIRE LIFE. 1446 00:54:33,286 --> 00:54:35,355 GETTING MY WHITE HOUSE MOMENT 1447 00:54:35,355 --> 00:54:36,923 SURROUNDED MY FAMILY MEANT SO 1448 00:54:36,923 --> 00:54:37,123 MUCH. 1449 00:54:37,123 --> 00:54:40,093 IT WAS NOT THE CIRCUMSTANCES I 1450 00:54:40,093 --> 00:54:46,866 ANTICIPATED, RELYING ON WALKER, 1451 00:54:46,866 --> 00:54:47,667 USING TEXT-TO-SPEECH TECHNOLOGY, 1452 00:54:47,667 --> 00:54:49,135 BUT MY TEAM WAS WORKING ON 1453 00:54:49,135 --> 00:54:51,237 DEVELOPING MY NEW A.I., READY 1454 00:54:51,237 --> 00:54:53,206 JUST IN TIME FOR THE EVENT. 1455 00:54:53,206 --> 00:54:58,344 FIRST TIME I USED THIS WAS TO 1456 00:54:58,344 --> 00:54:59,612 SPEAK WITH THE PRESIDENT AT THE 1457 00:54:59,612 --> 00:55:00,079 SIGNING. 1458 00:55:00,079 --> 00:55:03,549 I SET OUT TO USE MY PLATFORM IN 1459 00:55:03,549 --> 00:55:04,417 CONGRESS TO FIGHT FOR BRAIN 1460 00:55:04,417 --> 00:55:06,886 HEALTH I STARTED BY READING UP 1461 00:55:06,886 --> 00:55:08,021 ON POLICY, HAVING CONVERSATIONS 1462 00:55:08,021 --> 00:55:09,555 WITH COLLEAGUES WHO WORKED 1463 00:55:09,555 --> 00:55:11,858 CLOSELY ON THESE ISSUES, MEETING 1464 00:55:11,858 --> 00:55:13,159 WITH EXPERTS, LOOKING AT WHAT 1465 00:55:13,159 --> 00:55:14,761 KIND OF COMMON SENSE LEGISLATION 1466 00:55:14,761 --> 00:55:18,297 WE MIGHT GET SUPPORT AROUND. 1467 00:55:18,297 --> 00:55:20,767 WHAT I DIDN'T FULLY ANTICIPATE 1468 00:55:20,767 --> 00:55:21,701 WAS WHAT MY PLATFORM COULD MEAN 1469 00:55:21,701 --> 00:55:24,404 NOT IN TERMS OF VOTES AND POLICY 1470 00:55:24,404 --> 00:55:25,605 BUT INVISIBILITY. 1471 00:55:25,605 --> 00:55:26,806 I'VE BEEN A LEGISLATOR WHO WOULD 1472 00:55:26,806 --> 00:55:28,441 RATHER PUT HER HEAD DOWN AND GET 1473 00:55:28,441 --> 00:55:29,742 INTO THE WORK RATHER THAN SPEND 1474 00:55:29,742 --> 00:55:32,078 MY TIME IN FRONT OF A CNN 1475 00:55:32,078 --> 00:55:33,279 CAMERA. 1476 00:55:33,279 --> 00:55:36,182 IN THAT SPIRIT I ENTIRELY 1477 00:55:36,182 --> 00:55:37,150 UNDERESTIMATED WHAT WOULD HAPPEN 1478 00:55:37,150 --> 00:55:42,255 WHEN USING THE A.M. ON -- THE . 1479 00:55:42,255 --> 00:55:45,491 I WAS TRYING TO GET A BILL 1480 00:55:45,491 --> 00:55:45,725 PASSED. 1481 00:55:45,725 --> 00:55:47,527 A RUN-OF-THE-MILL POST OFFICE 1482 00:55:47,527 --> 00:55:49,529 RENAMING BILL, ONE OF MANY THE 1483 00:55:49,529 --> 00:55:52,832 HOUSE ADVANCES EACH YEAR. 1484 00:55:52,832 --> 00:55:54,634 MY MOTIVATION WAS DOING ANYTHING 1485 00:55:54,634 --> 00:55:55,735 TO KEEP DOING MY JOB. 1486 00:55:55,735 --> 00:55:56,903 IT TURNED INTO WHAT I HAVE TO 1487 00:55:56,903 --> 00:55:58,938 BELIEVE IS ONE OF THE MOST 1488 00:55:58,938 --> 00:55:59,972 WATCHED POST OFFICE RENAMING 1489 00:55:59,972 --> 00:56:01,841 SPEECHES IN A LONG TIME. 1490 00:56:01,841 --> 00:56:04,277 AFTER MAKING HISTORY AS THE 1491 00:56:04,277 --> 00:56:05,445 FIRST PERSON TO USE ALTERNATIVE 1492 00:56:05,445 --> 00:56:06,712 TEXT ON THE HOUSE FLOOR, I 1493 00:56:06,712 --> 00:56:07,580 RECEIVED A GREAT DEAL OF 1494 00:56:07,580 --> 00:56:12,852 ATTENTION IN THE PRESS AND MORE 1495 00:56:12,852 --> 00:56:14,987 MEANINGFULLY OUTPOURING OF 1496 00:56:14,987 --> 00:56:16,422 MESSAGES FROM ADVOCATES AND 1497 00:56:16,422 --> 00:56:17,990 THOSE FACING CHALLENGES. 1498 00:56:17,990 --> 00:56:20,793 CATCHING ME OFF GUARD AGAIN. 1499 00:56:20,793 --> 00:56:22,161 I THINK I DIDN'T ANTICIPATE THAT 1500 00:56:22,161 --> 00:56:22,995 ATTENTION BECAUSE I'VE BEEN IN 1501 00:56:22,995 --> 00:56:24,931 THE PUBLIC LIGHT AS I SPENT OVER 1502 00:56:24,931 --> 00:56:26,632 TWO DECADES IN PUBLIC SERVICE. 1503 00:56:26,632 --> 00:56:28,434 MY ENTIRE HEALTH BATTLE WITH PSP 1504 00:56:28,434 --> 00:56:30,136 HAS BEEN IN THE PUBLIC EYE. 1505 00:56:30,136 --> 00:56:31,437 THE IMPACT ON MY HEALTH AS WELL 1506 00:56:31,437 --> 00:56:34,407 AS THE WAYS I'VE WORKED TO ADAPT 1507 00:56:34,407 --> 00:56:35,741 IS ON DISPLAY. 1508 00:56:35,741 --> 00:56:36,409 MY COLLEAGUES HAVE WATCHED OVER 1509 00:56:36,409 --> 00:56:41,047 THE COURSE OF THE YEAR, 1510 00:56:41,047 --> 00:56:42,148 STRATEGIC STRIDING ON THE HOUSE 1511 00:56:42,148 --> 00:56:48,921 FLOOR TO RELYING ON WALKER, MY 1512 00:56:48,921 --> 00:56:50,990 SHARP QUESTIONING MUST NOW BE 1513 00:56:50,990 --> 00:56:53,392 DONE THROUGH PREPARED REMARKS. 1514 00:56:53,392 --> 00:56:54,427 FOR THOSE FACING CONDITIONS 1515 00:56:54,427 --> 00:56:56,696 THESE DISEASES PUSH YOU NOT INTO 1516 00:56:56,696 --> 00:56:59,031 THE SPOTLIGHT BUT INTO 1517 00:56:59,031 --> 00:57:00,199 ISOLATION. 1518 00:57:00,199 --> 00:57:03,903 PSP IS A LONELY DISEASE, ROBBING 1519 00:57:03,903 --> 00:57:04,937 MOBILITY, WALK, RUN, TRAVELING 1520 00:57:04,937 --> 00:57:06,539 UNDER YOUR OWN POWER AND 1521 00:57:06,539 --> 00:57:08,241 COMMUNICATE BY SPEAKING. 1522 00:57:08,241 --> 00:57:09,876 I DON'T BEMOAN THE WAYS MY 1523 00:57:09,876 --> 00:57:11,043 HEALTH STRUGGLE HAS BEEN PUBLIC, 1524 00:57:11,043 --> 00:57:14,847 RATHER I SEE THE PRIVILEGE AND 1525 00:57:14,847 --> 00:57:16,616 RECOGNIZE THE OPPORTUNITY. 1526 00:57:16,616 --> 00:57:20,052 I HAD THE LUXURY OF TEAM GETTING 1527 00:57:20,052 --> 00:57:21,554 ME TO VOTES AND OFFICIAL 1528 00:57:21,554 --> 00:57:22,522 COMMITMENTS AND SCHEDULING MY 1529 00:57:22,522 --> 00:57:22,855 DAY. 1530 00:57:22,855 --> 00:57:25,057 WHILE I NO LONGER HAVE A 1531 00:57:25,057 --> 00:57:26,526 CONGRESSIONAL STAFF, MY HUSBAND 1532 00:57:26,526 --> 00:57:27,593 AND CAREGIVER, ANDREW, MANAGES 1533 00:57:27,593 --> 00:57:30,062 TO GET ME UP AND OUT IN TIME FOR 1534 00:57:30,062 --> 00:57:30,930 MY MANY APPOINTMENTS. 1535 00:57:30,930 --> 00:57:34,267 I HAVE YEARS OF OLD VOICE 1536 00:57:34,267 --> 00:57:35,134 RECORDINGS WHICH MADE IT 1537 00:57:35,134 --> 00:57:40,806 POSSIBLE TO DEVELOP A SCARY-GOOD 1538 00:57:40,806 --> 00:57:41,707 RE-CREATION OF MY VOICE. 1539 00:57:41,707 --> 00:57:43,442 I HAVE THE PLATFORM TO TELL MY 1540 00:57:43,442 --> 00:57:45,178 STORY ON MY TERMS, RECOGNIZING 1541 00:57:45,178 --> 00:57:46,779 THE PRIVILEGE AND POWER IN THAT. 1542 00:57:46,779 --> 00:57:49,148 I'VE TRIED TO MAKE THE MOST OF 1543 00:57:49,148 --> 00:57:49,815 IT. 1544 00:57:49,815 --> 00:57:53,152 I'VE SHARED THE WAYS PSP 1545 00:57:53,152 --> 00:57:53,753 AFFECTED MY DAY-TO-DAY LIFE, 1546 00:57:53,753 --> 00:57:57,490 WHAT THE DISEASE IS AND IS NOT. 1547 00:57:57,490 --> 00:57:58,491 I'VE CORRECTED COLLEAGUES WHO 1548 00:57:58,491 --> 00:58:00,860 SPOKE TO ME LIKE A CHILD, 1549 00:58:00,860 --> 00:58:02,061 MISTAKING PHYSICAL DECLINE FOR 1550 00:58:02,061 --> 00:58:03,429 MENTAL ONE. 1551 00:58:03,429 --> 00:58:04,197 I'VE ENCOURAGED OTHER PATIENTS 1552 00:58:04,197 --> 00:58:06,432 TO DO THINGS THAT CAN HELP THEM 1553 00:58:06,432 --> 00:58:07,333 ALONG THEIR JOURNEY LIKE 1554 00:58:07,333 --> 00:58:09,068 RECORDING THEIR VOICE SO THEY 1555 00:58:09,068 --> 00:58:10,937 TOO MIGHT DEVELOP AN A.I. MODEL 1556 00:58:10,937 --> 00:58:12,104 AND KEEP THEIR VOICE. 1557 00:58:12,104 --> 00:58:13,539 I'VE SHARED MY STORY IN EVERY 1558 00:58:13,539 --> 00:58:15,808 WAY I CAN BECAUSE I HOPE IT 1559 00:58:15,808 --> 00:58:18,244 MAKES THIS STRUGGLE JUST A 1560 00:58:18,244 --> 00:58:19,478 LITTLE LESS LONELY AND 1561 00:58:19,478 --> 00:58:19,845 ISOLATING. 1562 00:58:19,845 --> 00:58:21,714 I'M GOING TO KEEP UP MY ADVOCACY 1563 00:58:21,714 --> 00:58:22,782 FOR THAT REASON. 1564 00:58:22,782 --> 00:58:25,685 AFTER I FIRST USED MY 1565 00:58:25,685 --> 00:58:26,919 TEXT-TO-SPEECH ON THE HOUSE 1566 00:58:26,919 --> 00:58:29,121 FLOOR I RECEIVED A TEXT FROM A 1567 00:58:29,121 --> 00:58:30,456 FORMER COLLEAGUE IN THE GENERAL 1568 00:58:30,456 --> 00:58:31,958 ASSEMBLY, I KNOW THAT YOU ALWAYS 1569 00:58:31,958 --> 00:58:33,426 DO THIS WORK FOR ALL OF US BUT I 1570 00:58:33,426 --> 00:58:43,469 WANT YOU TO KNOW MY FRIENDS WHO 1571 00:58:43,469 --> 00:58:46,739 USE ASSISTIVE TECHNOLOGY SHOWED 1572 00:58:46,739 --> 00:58:48,908 THEIR KIDS YOUR SPEECH, DOING 1573 00:58:48,908 --> 00:58:50,710 MORE TO ADVANCE THAN YOU'LL 1574 00:58:50,710 --> 00:58:50,910 KNOW. 1575 00:58:50,910 --> 00:58:52,311 WHILE YOU'RE KICKING ASS FOR 1576 00:58:52,311 --> 00:58:53,546 EVERYONE, YOU JUST CHANGED THE 1577 00:58:53,546 --> 00:58:57,750 WORLD FOR MY FAVORITE KIDDOS. 1578 00:58:57,750 --> 00:59:00,186 SO PROUD TO KNOW YOU. 1579 00:59:00,186 --> 00:59:01,554 READING THOSE WORDS WENT SO MUCH 1580 00:59:01,554 --> 00:59:04,890 TO ME. 1581 00:59:04,890 --> 00:59:06,325 MY HOPE IS THAT I CAN MAKE THE 1582 00:59:06,325 --> 00:59:08,060 MOST GOOD OUT OF THE SITUATION. 1583 00:59:08,060 --> 00:59:10,663 I HOPE I CAN CONTINUE TO HELP 1584 00:59:10,663 --> 00:59:15,968 BRING GREATER RESOURCES TO 1585 00:59:15,968 --> 00:59:17,336 ANSWERING IMPOSSIBLE QUESTIONS 1586 00:59:17,336 --> 00:59:21,340 AM TO GIVE PEOPLE GOING THROUGH 1587 00:59:21,340 --> 00:59:22,875 THIS COURAGE TO FACE THE 1588 00:59:22,875 --> 00:59:23,509 STRUGGLES HEAD ON. 1589 00:59:23,509 --> 00:59:27,046 FOR ME THE BEST WAY OUT IS 1590 00:59:27,046 --> 00:59:27,513 THROUGH. 1591 00:59:27,513 --> 00:59:28,914 I'M GRATEFUL FOR THE WORK SO 1592 00:59:28,914 --> 00:59:32,752 MANY HAVE DONE TO BETTER 1593 00:59:32,752 --> 00:59:34,253 DIAGNOSE, TREAT, CURE AND 1594 00:59:34,253 --> 00:59:35,054 PREVENT THESE CONDITIONS AND 1595 00:59:35,054 --> 00:59:37,023 COMFORT YOU BRING TO THOSE 1596 00:59:37,023 --> 00:59:37,690 FIGHTING THEM. 1597 00:59:37,690 --> 00:59:40,293 TO KNOW THERE ARE BRILLIANT, 1598 00:59:40,293 --> 00:59:41,494 DETERMINED, CARE PEOPLE LIKE YOU 1599 00:59:41,494 --> 00:59:44,597 MEANS THE WORLD TO SOMEONE LIKE 1600 00:59:44,597 --> 00:59:45,698 ME. 1601 00:59:45,698 --> 00:59:46,399 SO, THANK YOU. 1602 00:59:46,399 --> 00:59:51,070 THANK YOU FOR THE KIND I 1603 00:59:51,070 --> 00:59:53,639 INVITATION TO JOIN YOU. 1604 00:59:53,639 --> 00:59:55,408 SHARING MY STORY IS EVEN GREATER 1605 00:59:55,408 --> 00:59:58,377 THAN THE POWER OF MY VOTE IN 1606 00:59:58,377 --> 00:59:58,678 CONGRESS. 1607 00:59:58,678 --> 01:00:00,246 THANK YOU FOR ALLOWING ME TO 1608 01:00:00,246 --> 01:00:10,656 SHARE THAT STORY TODAY. 1609 01:00:44,256 --> 01:00:48,627 >> THANK YOU, CONGRESSWOMAN 1610 01:00:48,627 --> 01:00:48,861 WEXTON. 1611 01:00:48,861 --> 01:00:50,029 IT MEANS SO MUCH THAT YOU'RE 1612 01:00:50,029 --> 01:00:50,329 HERE. 1613 01:00:50,329 --> 01:00:52,098 THANK YOU FOR YOUR SERVICE AND 1614 01:00:52,098 --> 01:00:54,667 STORE STANDING WITH US AS A 1615 01:00:54,667 --> 01:00:55,167 COMMUNITY. 1616 01:00:55,167 --> 01:00:58,270 AND FOR SHARING YOUR STORY, YOUR 1617 01:00:58,270 --> 01:00:59,605 VOICE, SO PUBLICLY AND TO SO 1618 01:00:59,605 --> 01:01:01,941 MUCH EFFECT. 1619 01:01:01,941 --> 01:01:02,842 WE TRULY APPRECIATE IT. 1620 01:01:02,842 --> 01:01:04,310 BEFORE WE MOVE TO OUR NEXT 1621 01:01:04,310 --> 01:01:05,644 SEGMENT I WANT TO LET PEOPLE 1622 01:01:05,644 --> 01:01:08,414 KNOW THERE'S WATER AND COFFEE IN 1623 01:01:08,414 --> 01:01:12,551 THE BACK SHOULD ANYONE NEED A 1624 01:01:12,551 --> 01:01:15,955 LIGHT REFRESHMENT. 1625 01:01:15,955 --> 01:01:19,425 THE FIRST PANEL WILL EXPLORE THE 1626 01:01:19,425 --> 01:01:21,427 STATE OF RESEARCH LED BY HARVEY 1627 01:01:21,427 --> 01:01:24,397 LODISH, WHO JOINS US FROM BOSTON 1628 01:01:24,397 --> 01:01:29,068 WHERE HE HAS BEEN A PROFESSOR AT 1629 01:01:29,068 --> 01:01:30,536 M.I.T., LEADER IN BIOMEDICAL 1630 01:01:30,536 --> 01:01:35,341 SCIENCE, YOU MAY KNOW HIM FROM 1631 01:01:35,341 --> 01:01:36,575 THE TEXT BOOKS, MOLECULAR 1632 01:01:36,575 --> 01:01:39,412 BIOLOGY OF THE CELL. 1633 01:01:39,412 --> 01:01:46,118 IT'S A LONG TEXT BOOK. 1634 01:01:46,118 --> 01:01:48,687 MOLECULAR CELL BIOLOGY. 1635 01:01:48,687 --> 01:01:50,423 I'M DIGGING INTO THE PAST HERE 1636 01:01:50,423 --> 01:01:54,794 BUT ALSO HEAVY. 1637 01:01:54,794 --> 01:01:58,130 SO BLAME HARVEY FOR YOUR BOOK 1638 01:01:58,130 --> 01:01:58,964 CARRYING. 1639 01:01:58,964 --> 01:02:01,434 JOKING ASIDE, HARVEY HAS 1640 01:02:01,434 --> 01:02:04,069 EXEMPLIFIED BEING A LIFE-LONG 1641 01:02:04,069 --> 01:02:05,905 SCIENTIST, INNOVATOR, MENTOR, A 1642 01:02:05,905 --> 01:02:06,906 LIFE-LONG STUDENT. 1643 01:02:06,906 --> 01:02:09,775 I MEAN KEEPING AN EYE OPEN 1644 01:02:09,775 --> 01:02:13,078 TOWARD THE FUTURE OF SCIENCE, 1645 01:02:13,078 --> 01:02:15,147 HOW SCIENCE CAN DRIVE US TO MAKE 1646 01:02:15,147 --> 01:02:16,615 CHANGE IN MEDICINE. 1647 01:02:16,615 --> 01:02:18,818 WE'VE BEEN PRIVILEGED TO WORK 1648 01:02:18,818 --> 01:02:20,719 WITH HARVEY AND THE PANEL. 1649 01:02:20,719 --> 01:02:22,254 HOPE YOU'LL TAKE AWAY SOME 1650 01:02:22,254 --> 01:02:28,060 MESSAGES OF WHAT WE'VE ACHIEVED 1651 01:02:28,060 --> 01:02:38,604 AND WHERE THE FUTURE IS MOVING. 1652 01:02:46,212 --> 01:02:54,386 THANKS, HARVEY. 1653 01:02:54,386 --> 01:02:55,154 >> HI. 1654 01:02:55,154 --> 01:02:57,189 I'M GOING TO LET MY COLLEAGUES 1655 01:02:57,189 --> 01:02:57,957 INTRODUCE THEMSELVES. 1656 01:02:57,957 --> 01:02:59,458 I THINK THEY KNOW THEMSELVES 1657 01:02:59,458 --> 01:03:02,728 BETTER THAN I EVER WILL. 1658 01:03:02,728 --> 01:03:06,131 JUST A BIT OF MY OWN BACKGROUND, 1659 01:03:06,131 --> 01:03:09,168 BESIDES BEING A PROFESSOR AT 1660 01:03:09,168 --> 01:03:13,205 M.I.T., I'VE BEEN IN BIOTECH FOR 1661 01:03:13,205 --> 01:03:17,476 WELL OVER 40 YEARS. 1662 01:03:17,476 --> 01:03:23,048 HAVING STARTED COMPANIES SUCH AS 1663 01:03:23,048 --> 01:03:25,351 GENZIME IN THE 1980s, PROBABLY 1664 01:03:25,351 --> 01:03:27,853 THE FIRST COMPANY TO DEVELOP AND 1665 01:03:27,853 --> 01:03:30,789 MARKET AND CLINICALLY TEST AND 1666 01:03:30,789 --> 01:03:33,526 GET FEDERALLY APPROVED A DRUG 1667 01:03:33,526 --> 01:03:34,860 FOR A RARE DISEASE. 1668 01:03:34,860 --> 01:03:43,035 IN THAT CASE IT WAS ENZYME 1669 01:03:43,035 --> 01:03:44,370 REPLACEMENT, RECOMBINANT FOR 1670 01:03:44,370 --> 01:03:44,770 GAUCHER'S DISEASE. 1671 01:03:44,770 --> 01:03:48,107 FOR ME IT WAS AN INTELLECTUAL 1672 01:03:48,107 --> 01:03:51,544 ACCOMPLISH TO HELP BUILD THIS 1673 01:03:51,544 --> 01:03:51,977 RARE DISEASE DRUG. 1674 01:03:51,977 --> 01:04:00,653 IT WAS BASED WORK ON WORK FROM 1675 01:04:00,653 --> 01:04:03,222 ROSCO BRADY AT NIH, NOT DRIVEN 1676 01:04:03,222 --> 01:04:06,225 BY SCIENTISTS BUT A BUSINESS 1677 01:04:06,225 --> 01:04:08,227 PERSON WHO BUILT THE COMPANY 1678 01:04:08,227 --> 01:04:12,097 AROUND RARE DISEASES. 1679 01:04:12,097 --> 01:04:19,405 I LEFT GENZYME IN AFTER ITS 1680 01:04:19,405 --> 01:04:21,173 I.P.O. 1681 01:04:21,173 --> 01:04:25,210 GAUCHER'S DISEASE IS MOST COMMON 1682 01:04:25,210 --> 01:04:26,378 IN ASHKENAZI JEWs, TRANSPIRED 1683 01:04:26,378 --> 01:04:31,684 IN 2002 THAT OUR DATA AND HER 1684 01:04:31,684 --> 01:04:34,086 HUSBAND WERE CARRIERS. 1685 01:04:34,086 --> 01:04:44,597 THE CHILD SHE WAS CARRYING HAD 1686 01:04:46,165 --> 01:04:49,835 GAUCHER'S, BY AMNIO, HE WOULD BE 1687 01:04:49,835 --> 01:04:52,137 BORN WITH TYPE 1 WHICH DOES NOT 1688 01:04:52,137 --> 01:04:54,073 AFFECT CENTRAL NERVOUS SYSTEM. 1689 01:04:54,073 --> 01:04:59,211 AND I'M PROUD TO TELL YOU THAT 1690 01:04:59,211 --> 01:05:03,515 ANDREW IS NOT ONLY -- HOW OLD IS 1691 01:05:03,515 --> 01:05:03,849 HE? 1692 01:05:03,849 --> 01:05:06,118 23 AND APPLYING TO MEDICAL 1693 01:05:06,118 --> 01:05:06,352 SCHOOL. 1694 01:05:06,352 --> 01:05:12,558 AS IT HAPPENED, HE'S HERE IN 1695 01:05:12,558 --> 01:05:14,426 WASHINGTON WITH THE GAUCHER IN 1696 01:05:14,426 --> 01:05:17,029 WASHINGTON LOBBYING TO CONGRESS 1697 01:05:17,029 --> 01:05:17,596 FOR SUPPORT. 1698 01:05:17,596 --> 01:05:19,398 THERE MAY BE A GENE FOR THIS 1699 01:05:19,398 --> 01:05:20,499 SORT OF THING. 1700 01:05:20,499 --> 01:05:23,535 I DON'T KNOW. 1701 01:05:23,535 --> 01:05:28,941 BUT WE'RE GOING TO TALK ABOUT 1702 01:05:28,941 --> 01:05:31,543 TAKING SCIENCE INTO BUSINESS. 1703 01:05:31,543 --> 01:05:33,379 MY COLLEAGUES HAVE A GREAT DEAL 1704 01:05:33,379 --> 01:05:38,851 OF EXPERIENCE WITH THIS. 1705 01:05:38,851 --> 01:05:48,460 I THINK WE'LL START WITH YOU. 1706 01:05:48,460 --> 01:05:51,030 >> EDWARD KAYE, PEDIATRIC 1707 01:05:51,030 --> 01:05:51,797 NEUROLOGIST, GENETICIST. 1708 01:05:51,797 --> 01:05:53,966 ONE THING YOU'LL HEAR ABOUT 1709 01:05:53,966 --> 01:06:01,540 TODAY IS HOW CONNECTED WE ARE. 1710 01:06:01,540 --> 01:06:05,277 GENZYME WAS THE FIRST COMPANY I 1711 01:06:05,277 --> 01:06:10,783 WORKED WITH, A LOT OF WORK AND 1712 01:06:10,783 --> 01:06:18,957 EARLY WORK WAS TO STUDY TYPE 1713 01:06:18,957 --> 01:06:23,629 ABOUT GAUCHER DISEASE WORKING 1714 01:06:23,629 --> 01:06:24,229 WITH JOHN, AND ROSCO BRADY, IN 1715 01:06:24,229 --> 01:06:28,567 THE BRAIN BANK AT NIH WE HAD 1716 01:06:28,567 --> 01:06:30,903 SAMPLES, WE HAD A TECHNIQUE TO 1717 01:06:30,903 --> 01:06:34,907 MEASURE LIPIDS, I WAS A JUNIOR 1718 01:06:34,907 --> 01:06:36,709 FACULTY, JUST STARTING OUT, THAT 1719 01:06:36,709 --> 01:06:38,043 WAS VERY HELPFUL. 1720 01:06:38,043 --> 01:06:41,647 FOR ME I AM ONE OF THE FEW 1721 01:06:41,647 --> 01:06:43,282 PEOPLE THAT TRANSITIONED FROM 1722 01:06:43,282 --> 01:06:48,387 ACADEMIA, SPENT 20 YEARS IN 1723 01:06:48,387 --> 01:06:50,556 ACADEMIA, SPENT TIME AT MASS 1724 01:06:50,556 --> 01:06:53,592 GENERAL, BOSTON CHILDREN'S, AT 1725 01:06:53,592 --> 01:06:55,661 CHOP, AND THEN ONE OF MY 1726 01:06:55,661 --> 01:06:57,663 FRUSTRATIONS WAS WE WERE MAKING 1727 01:06:57,663 --> 01:07:02,167 A LOT OF DIAGNOSES BUT HAD NO 1728 01:07:02,167 --> 01:07:02,935 THERAPIES FOR NEUROGENETIC 1729 01:07:02,935 --> 01:07:04,803 DISEASES SO I WAS DETERMINED TO 1730 01:07:04,803 --> 01:07:08,807 COME UP WITH THERAPIES, WE'RE 1731 01:07:08,807 --> 01:07:13,312 WORKING ON GENE THERAPY FOR A 1732 01:07:13,312 --> 01:07:15,214 LYSOSOMAL STORAGE DISEASE, IT 1733 01:07:15,214 --> 01:07:23,589 HAD TO BE AT A BIOTECH COMPANY, 1734 01:07:23,589 --> 01:07:26,358 GENZYME WAS MY FIRST APPROACH. 1735 01:07:26,358 --> 01:07:29,962 I MADE THE TRANSITION BACK AND 1736 01:07:29,962 --> 01:07:32,664 FORTH, I KNEW WALTER AND ANN. 1737 01:07:32,664 --> 01:07:33,565 WE'RE ALL CONNECTED. 1738 01:07:33,565 --> 01:07:35,567 ONE OF THE SUCCESSES OF THE 1739 01:07:35,567 --> 01:07:37,703 BIOTECH INDUSTRY, AND THAT WAS 1740 01:07:37,703 --> 01:07:42,541 TRUE FOR MY CAREER AT GENZYME 1741 01:07:42,541 --> 01:07:46,011 AND CONTINUING ON, WE WERE ABLE 1742 01:07:46,011 --> 01:07:47,212 TO IDENTIFY GOOD POTENTIAL 1743 01:07:47,212 --> 01:07:50,048 MEDICINES OUT OF UNIVERSITIES, 1744 01:07:50,048 --> 01:07:51,483 ALL FUNDED BY THE NINDS, THAT 1745 01:07:51,483 --> 01:07:55,721 ALLOWED US TO MAKE MEDICINE. 1746 01:07:55,721 --> 01:07:56,522 WITHOUT THAT INFRASTRUCTURE, 1747 01:07:56,522 --> 01:07:57,189 WITHOUT THAT SCIENTIFIC 1748 01:07:57,189 --> 01:07:58,991 INNOVATION, WE COULD HAVE NEVER 1749 01:07:58,991 --> 01:08:00,392 MADE THE PROGRESS THAT WE HAVE. 1750 01:08:00,392 --> 01:08:04,463 SO I THINK WE HAVE TO REMEMBER 1751 01:08:04,463 --> 01:08:07,232 THAT WE ARE SO CONNECTED 1752 01:08:07,232 --> 01:08:08,534 TOGETHER, BETWEEN THE BASIC 1753 01:08:08,534 --> 01:08:09,935 RESEARCH AND BETWEEN THE 1754 01:08:09,935 --> 01:08:11,603 INDUSTRY AND THE PURPOSE I 1755 01:08:11,603 --> 01:08:14,773 ALWAYS THOUGHT ABOUT IS 1756 01:08:14,773 --> 01:08:16,041 PURPOSES, MAKING PEOPLE BETTER, 1757 01:08:16,041 --> 01:08:16,909 MAKING THEM HEALTHY. 1758 01:08:16,909 --> 01:08:19,144 WE DO THAT BY USING THE MOST 1759 01:08:19,144 --> 01:08:28,320 CURRENT STATE STATE-OF-THE-ART 1760 01:08:28,320 --> 01:08:33,192 SCIENCE. 1761 01:08:33,192 --> 01:08:34,426 >> CRAIG BLACKSTONE, SCIENTIFIC 1762 01:08:34,426 --> 01:08:38,263 DIRECTOR OF MASS GENERAL, THE 1763 01:08:38,263 --> 01:08:40,265 MASS GENERAL BRIGHAM SCIENCE 1764 01:08:40,265 --> 01:08:40,933 INSTITUTE, PROBABLY THE LARGEST 1765 01:08:40,933 --> 01:08:42,267 IN THE WORLD. 1766 01:08:42,267 --> 01:08:43,035 IT'S ALL THE ABOUT 1767 01:08:43,035 --> 01:08:45,137 COLLABORATION, TRYING TO LINK 1768 01:08:45,137 --> 01:08:45,904 ALL THE NEUROSCIENCE TOGETHER, 1769 01:08:45,904 --> 01:08:53,912 NOT JUST NEUROLOGY, TO SPEED 1770 01:08:53,912 --> 01:08:58,417 CURES, ONE OF THE REAL THINGS IS 1771 01:08:58,417 --> 01:08:59,351 MAKING CLINICAL TRIALS MORE 1772 01:08:59,351 --> 01:09:03,355 EFFICIENT AND CHEAPER SO WE CAN 1773 01:09:03,355 --> 01:09:04,156 TRY MORE THERAPIES. 1774 01:09:04,156 --> 01:09:07,526 ANOTHER JOB CHIEF OF MOVEMENT 1775 01:09:07,526 --> 01:09:09,294 DISORDERS DIVISION AT MASS 1776 01:09:09,294 --> 01:09:11,997 GENERAL, WITH EXCELLENCE IN MANY 1777 01:09:11,997 --> 01:09:12,197 AREAS. 1778 01:09:12,197 --> 01:09:14,466 IN MANY WE PARTNER WITH YOU. 1779 01:09:14,466 --> 01:09:18,937 WE HAVE ONE IN PARKINSON'S, WITH 1780 01:09:18,937 --> 01:09:23,675 THE PARKINSON'S FOUNDATION, LEWY 1781 01:09:23,675 --> 01:09:33,018 BODY, TOURETTE'S, HOLY HUNTING, 1782 01:09:33,018 --> 01:09:33,952 PSP, LEARNING WHAT'S MOST 1783 01:09:33,952 --> 01:09:35,354 IMPORTANT, COMING UP WITH NEW 1784 01:09:35,354 --> 01:09:37,923 WAYS TO DO TRIALS AND BRING 1785 01:09:37,923 --> 01:09:38,857 EXPERTISE TOGETHER IN WAYS THAT 1786 01:09:38,857 --> 01:09:42,494 ARE BENEFICIAL TO ALL OF US. 1787 01:09:42,494 --> 01:09:44,196 MY CAREER STARTED HERE, I WAS 1788 01:09:44,196 --> 01:09:47,666 HERE FOR 20 YEARS AT THE NIH, 1789 01:09:47,666 --> 01:09:49,001 UNDER WALTER AND OTHERS, HAD THE 1790 01:09:49,001 --> 01:09:50,802 REAL EXPERIENCE TO SEE THE 1791 01:09:50,802 --> 01:09:52,404 WONDERFUL WORK IN INTRAMURAL 1792 01:09:52,404 --> 01:09:54,873 RESEARCH PROGRAM HERE AND ALL 1793 01:09:54,873 --> 01:09:56,508 THE PIONEERING WORK THAT CAN BE 1794 01:09:56,508 --> 01:09:57,709 DONE AND HOPEFULLY THAT I CAN 1795 01:09:57,709 --> 01:09:59,478 CONTINUE IN THE FUTURE BECAUSE 1796 01:09:59,478 --> 01:10:00,279 ABSOLUTELY WONDERFUL AND 1797 01:10:00,279 --> 01:10:03,515 SUPPORTIVE PLACE TO BE. 1798 01:10:03,515 --> 01:10:05,083 A LOT OF GREAT IDEAS THAT ENDS 1799 01:10:05,083 --> 01:10:09,488 UP IN PATIENTS REALLY STARTED 1800 01:10:09,488 --> 01:10:11,356 HERE. 1801 01:10:11,356 --> 01:10:13,859 >> HI, POOJA KHATRI, PROFESSOR 1802 01:10:13,859 --> 01:10:15,127 AND CHAIR OF NEUROLOGY, YALE 1803 01:10:15,127 --> 01:10:16,028 UNIVERSITY. 1804 01:10:16,028 --> 01:10:19,331 I AM A STROKE SPECIALIST. 1805 01:10:19,331 --> 01:10:20,933 I GOT INTO RESEARCH BECAUSE I 1806 01:10:20,933 --> 01:10:22,834 WAS EXCITED ABOUT THE FACT THAT 1807 01:10:22,834 --> 01:10:24,102 WE HAD TREATMENTS FOR ACUTE 1808 01:10:24,102 --> 01:10:25,637 STROKE. 1809 01:10:25,637 --> 01:10:29,508 WE JUST FIRST HAD THAT 1810 01:10:29,508 --> 01:10:32,010 CLOT-BUSTING DRUG BUT THERE WERE 1811 01:10:32,010 --> 01:10:35,847 MORE QUESTIONS TO BE ANSWERED 1812 01:10:35,847 --> 01:10:36,982 AND BUILT ON. 1813 01:10:36,982 --> 01:10:39,885 I WAS EXCITED ABOUT THE SCIENCE 1814 01:10:39,885 --> 01:10:41,286 AROUND CLINICAL TRIALS, A LOT 1815 01:10:41,286 --> 01:10:42,054 LIKE CRAIG. 1816 01:10:42,054 --> 01:10:46,391 I'M HERE MOSTLY BECAUSE OF MY 1817 01:10:46,391 --> 01:10:49,094 ROLE LEADING NIH StrokeNet, 1818 01:10:49,094 --> 01:10:50,529 PERHAPS THE LARGEST CLINICAL 1819 01:10:50,529 --> 01:10:52,331 TRIAL NETWORK FUNDED BY NINDS, 1820 01:10:52,331 --> 01:10:55,033 AND WE'RE CHARGED WITH 1821 01:10:55,033 --> 01:10:56,001 HARNESSING THE LEADERSHIP ACROSS 1822 01:10:56,001 --> 01:11:00,839 THE COUNTRY TO DEVELOP AND 1823 01:11:00,839 --> 01:11:03,775 IMPLEMENT TRIALS IN STROKE 1824 01:11:03,775 --> 01:11:05,077 PREVENTION, ACUTE THERAPY, 1825 01:11:05,077 --> 01:11:05,410 RECOVERY. 1826 01:11:05,410 --> 01:11:07,746 AND ALSO TRAIN THE NEXT 1827 01:11:07,746 --> 01:11:08,380 GENERATION. 1828 01:11:08,380 --> 01:11:10,482 WE'VE COMPLETED TEN TRIALS, ONE 1829 01:11:10,482 --> 01:11:13,652 GOT A CONGRESSIONAL AWARD. 1830 01:11:13,652 --> 01:11:14,553 IT EXPANDED ENDOVASCULAR THERAPY 1831 01:11:14,553 --> 01:11:17,356 WHERE YOU TAKE A WIRE UP AND 1832 01:11:17,356 --> 01:11:19,658 PULL THE CLOT OUT OF THE BRAIN, 1833 01:11:19,658 --> 01:11:20,559 VERY EXCISING, AND MANY OTHER 1834 01:11:20,559 --> 01:11:22,294 TRIALS THAT HAVE PAVED THE WAY 1835 01:11:22,294 --> 01:11:24,930 TO THE NEXT TRIALS, HOPEFULLY 1836 01:11:24,930 --> 01:11:26,231 MORE THERAPIES. 1837 01:11:26,231 --> 01:11:28,600 WE HAVE 15 ONGOING TRIALS RIGHT 1838 01:11:28,600 --> 01:11:32,270 NOW, AND WE'VE ENROLLED OVER 1839 01:11:32,270 --> 01:11:35,340 18,000 PATIENTS IN THESE 1840 01:11:35,340 --> 01:11:35,574 STUDIES. 1841 01:11:35,574 --> 01:11:37,409 BUT BEYOND THE NUMBERS, I THINK 1842 01:11:37,409 --> 01:11:38,910 THE THING TO TAKE AWAY AND I 1843 01:11:38,910 --> 01:11:41,680 HOPE I CAN TOUCH ON SOME MORE IS 1844 01:11:41,680 --> 01:11:44,649 FIRST OF ALL ABOUT BRINGING 1845 01:11:44,649 --> 01:11:47,519 GROUPS OF PEOPLE TOGETHER AROUND 1846 01:11:47,519 --> 01:11:50,022 THIS COMMUNITY, CREATING AN 1847 01:11:50,022 --> 01:11:50,689 INFRASTRUCTURE, A PASSION, 1848 01:11:50,689 --> 01:11:52,024 BECAUSE YOU CAN DO GREAT SCIENCE 1849 01:11:52,024 --> 01:11:54,059 BUT YOU HAVE TO CONNECT IT TO 1850 01:11:54,059 --> 01:11:54,893 THE PEOPLE. 1851 01:11:54,893 --> 01:11:57,195 AND IT'S ONLY WHEN EVERYONE 1852 01:11:57,195 --> 01:11:58,764 COMES TOGETHER, NO ONE HAS THEIR 1853 01:11:58,764 --> 01:12:01,666 NAME BEHIND IT, IT'S A BIG GROUP 1854 01:12:01,666 --> 01:12:02,601 ACTIVITY. 1855 01:12:02,601 --> 01:12:04,102 I HOPE WE CAN TOUCH ON THAT. 1856 01:12:04,102 --> 01:12:06,972 AND THE SCIENCE OF DOING THE 1857 01:12:06,972 --> 01:12:07,372 TRIALS THEMSELVES. 1858 01:12:07,372 --> 01:12:09,608 WE'VE MADE PROGRESS IN HOW 1859 01:12:09,608 --> 01:12:11,843 EFFICIENT THEY ARE, WAYS TO 1860 01:12:11,843 --> 01:12:14,112 ANSWER QUESTIONS WITHOUT DOING A 1861 01:12:14,112 --> 01:12:16,048 ONE-AND-DONE, BUT WILL IT WORK 1862 01:12:16,048 --> 01:12:18,016 FOR THIS GROUP, WHAT IF IT WORKS 1863 01:12:18,016 --> 01:12:19,151 FOR A SMALLER GROUP, BUILDING 1864 01:12:19,151 --> 01:12:20,218 THAT INTO THE DESIGNS. 1865 01:12:20,218 --> 01:12:23,722 THANKS FOR HAVING ME. 1866 01:12:23,722 --> 01:12:34,066 I'LL PASS THINGS ON. 1867 01:12:37,135 --> 01:12:38,303 >> SO, I'M EVARISTUS NWULIA, I 1868 01:12:38,303 --> 01:12:41,473 AM A PROFESSOR OF NEUROSCIENCE 1869 01:12:41,473 --> 01:12:46,144 AT HOWARD UNIVERSITY. 1870 01:12:46,144 --> 01:12:52,417 I AM A CAREGIVER OF A FORMER 1871 01:12:52,417 --> 01:12:55,020 STROKE AND OTHER DISEASES 1872 01:12:55,020 --> 01:12:55,387 GRANDPARENTS. 1873 01:12:55,387 --> 01:12:57,622 AND CURRENTLY I'M THE DIRECTOR 1874 01:12:57,622 --> 01:13:01,626 OF A PROGRAM FOR THE NIH-FUNDED 1875 01:13:01,626 --> 01:13:04,796 BLUEPRINT MED TECH PROGRAM SO 1876 01:13:04,796 --> 01:13:08,800 THE BLUEPRINT MED TECH PROGRAM 1877 01:13:08,800 --> 01:13:12,471 THAT WE SUPPORT IS THE PROGRAM 1878 01:13:12,471 --> 01:13:19,978 THAT IS LIKE AN INCUBATOR HUB 1879 01:13:19,978 --> 01:13:22,881 THAT BRINGS TOGETHER 1880 01:13:22,881 --> 01:13:24,216 NEUROTECHNOLOGIES, DISORDERS, 1881 01:13:24,216 --> 01:13:26,952 PROVIDE RESOURCES, PROVIDE A 1882 01:13:26,952 --> 01:13:31,857 MENTORSHIP, HELP THEM TO 1883 01:13:31,857 --> 01:13:32,724 ACCELERATE DEVELOPMENT TO 1884 01:13:32,724 --> 01:13:35,660 COMMERCIAL, SO REALLY EXCITED TO 1885 01:13:35,660 --> 01:13:37,963 BE SUPPORTED BY WALTER AND OTHER 1886 01:13:37,963 --> 01:13:43,101 NIH INSTITUTES, SOME OF OUR 1887 01:13:43,101 --> 01:13:45,837 PROGRAM DIRECTORS ARE HERE. 1888 01:13:45,837 --> 01:13:49,808 THIS IS A PROGRAM THAT I REALLY, 1889 01:13:49,808 --> 01:13:50,942 YOU KNOW, ENJOY DOING. 1890 01:13:50,942 --> 01:13:53,812 I'LL TALK MORE ABOUT THAT AS WE 1891 01:13:53,812 --> 01:13:55,514 GO ON. 1892 01:13:55,514 --> 01:13:58,583 MY CAREER STARTED AFTER 1893 01:13:58,583 --> 01:13:59,317 RESIDENCY TRAINING AT JOHNS 1894 01:13:59,317 --> 01:14:00,285 HOPKINS UNIVERSITY, DEPARTMENT 1895 01:14:00,285 --> 01:14:02,854 OF PSYCHIATRY. 1896 01:14:02,854 --> 01:14:05,657 MY FOCUS THEN IN NEUROSCIENCE 1897 01:14:05,657 --> 01:14:06,825 WAS UNDERSTANDING MOLECULAR 1898 01:14:06,825 --> 01:14:10,996 MECHANISMS OF BRAIN DISORDERS. 1899 01:14:10,996 --> 01:14:19,771 SO I INITIALLY TRAINED IN 1900 01:14:19,771 --> 01:14:21,907 GENETICS, NEUROSCIENCE CENTER, 1901 01:14:21,907 --> 01:14:23,742 DEVELOPING PLURIPOTENT STEM 1902 01:14:23,742 --> 01:14:25,110 CELLS, STUDYING MECHANISMS OF 1903 01:14:25,110 --> 01:14:29,381 DISEASES IN ANIMALS. 1904 01:14:29,381 --> 01:14:31,149 AS A PHYSICIAN, MY, YOU KNOW, 1905 01:14:31,149 --> 01:14:32,050 DISAPPOINTMENT WITH THE PROCESS 1906 01:14:32,050 --> 01:14:33,985 IS THE LONG DURATION IT TAKES 1907 01:14:33,985 --> 01:14:38,823 FOR US TO GO FROM THIS BENCH TO 1908 01:14:38,823 --> 01:14:40,125 EVENTUAL LAB. 1909 01:14:40,125 --> 01:14:45,063 I MEAN, TO THE BEDSIDE. 1910 01:14:45,063 --> 01:14:51,036 SO TRAGEDY STRUCK MY FAMILY WHEN 1911 01:14:51,036 --> 01:14:53,772 MY GRANDPARENTS PASSED AWAY 1912 01:14:53,772 --> 01:14:56,741 WITHIN TWO MONTHS, AND SO THAT 1913 01:14:56,741 --> 01:14:58,944 WAS A PARADIGM SHIFT FOR ME. 1914 01:14:58,944 --> 01:15:01,546 I SHIFTED MY CAREER FROM 1915 01:15:01,546 --> 01:15:04,282 NEUROBIOLOGY TO NOW DEVELOPING 1916 01:15:04,282 --> 01:15:05,317 NEUROTECHNOLOGY. 1917 01:15:05,317 --> 01:15:09,888 AND AS I MOVED ON, DEVELOPED 1918 01:15:09,888 --> 01:15:12,123 TECHNOLOGIES, STARTED SMALL 1919 01:15:12,123 --> 01:15:17,162 BUSINESSES, MYSELF, I WAS, YOU 1920 01:15:17,162 --> 01:15:21,132 KNOW, ABLE TO SEE DISADVANTAGES 1921 01:15:21,132 --> 01:15:23,602 SMALL START-UPS, ESPECIALLY FROM 1922 01:15:23,602 --> 01:15:25,503 ACADEMIC CENTERS HAVE IN TERMS 1923 01:15:25,503 --> 01:15:27,973 OF HAVING THE RESOURCES, HAVING 1924 01:15:27,973 --> 01:15:29,774 THE FUNDING, BEING ABLE TO 1925 01:15:29,774 --> 01:15:33,144 NAVIGATE, YOU KNOW, THE 1926 01:15:33,144 --> 01:15:34,012 COMMERCIALIZATION PROCESS, 1927 01:15:34,012 --> 01:15:35,680 REGULATORY PROCESSES, AND WHEN 1928 01:15:35,680 --> 01:15:39,017 BLUEPRINT METHOD CAME I FOUND A 1929 01:15:39,017 --> 01:15:42,153 WONDERFUL OPPORTUNITY TO USE MY 1930 01:15:42,153 --> 01:15:45,390 EXPERIENCE TO ASSIST, PROVIDE 1931 01:15:45,390 --> 01:15:48,526 SUPPORT FOR SMALL -- FOR 1932 01:15:48,526 --> 01:15:49,594 NEUROTECHNOLOGIES, TO DEVELOP 1933 01:15:49,594 --> 01:15:53,765 TECHNOLOGIES THAT CAN REACH THE 1934 01:15:53,765 --> 01:15:54,899 HUMAN POPULATIONS. 1935 01:15:54,899 --> 01:16:01,039 SO I DESCRIBE MYSELF AS A 1936 01:16:01,039 --> 01:16:01,673 NEUROTECHNOLOGYIST, STAKEHOLDER, 1937 01:16:01,673 --> 01:16:02,440 CAREGIVING, ALSO A PHYSICIAN. 1938 01:16:02,440 --> 01:16:09,514 IT'S AN HONOR TO BE HERE WITH 1939 01:16:09,514 --> 01:16:09,681 YOU. 1940 01:16:09,681 --> 01:16:10,415 THANK YOU. 1941 01:16:10,415 --> 01:16:11,750 >> THANK YOU. 1942 01:16:11,750 --> 01:16:14,886 AS YOU'RE HEARING, A REAL 1943 01:16:14,886 --> 01:16:16,388 PROBLEM IS TAKING THE RESEARCH 1944 01:16:16,388 --> 01:16:21,126 OUT OF OUR ACADEMIC LABS, NIH 1945 01:16:21,126 --> 01:16:23,328 LABS, HOSPITAL LABS, INTO 1946 01:16:23,328 --> 01:16:25,397 COMMERCIAL PRACTICE SUCH THAT 1947 01:16:25,397 --> 01:16:28,066 THE THERAPY CAN BE MANUFACTURED, 1948 01:16:28,066 --> 01:16:30,468 MARKETED, AND USED BY PATIENTS 1949 01:16:30,468 --> 01:16:31,269 WORLDWIDE. 1950 01:16:31,269 --> 01:16:34,739 THERE ARE A COUPLE OF GOOD 1951 01:16:34,739 --> 01:16:36,841 EXAMPLES THAT WE'LL TALK ABOUT 1952 01:16:36,841 --> 01:16:41,846 IN THIS FIRST SET OF QUESTIONS. 1953 01:16:41,846 --> 01:16:45,150 LET ME BEGIN WITH ONE THAT I 1954 01:16:45,150 --> 01:16:46,384 THINK REALLY EXEMPLIFIES WHAT 1955 01:16:46,384 --> 01:16:50,655 CAN BE DONE, WHICH IS THE 1956 01:16:50,655 --> 01:16:53,224 DEVELOPMENT OF THE CYSTIC 1957 01:16:53,224 --> 01:16:55,593 FIBROSIS DRUGS. 1958 01:16:55,593 --> 01:16:57,195 CF, AS YOU KNOW, AFFECT ONLY 1959 01:16:57,195 --> 01:16:59,764 40,000 PEOPLE IN THE UNITED 1960 01:16:59,764 --> 01:17:00,598 STATES. 1961 01:17:00,598 --> 01:17:04,602 ABOUT 30 YEARS AGO, VERTEX, THE 1962 01:17:04,602 --> 01:17:06,604 BIOTECH COMPANY IN BOSTON, 1963 01:17:06,604 --> 01:17:09,774 BOUGHT A SMALL BIOTECH IN SAN 1964 01:17:09,774 --> 01:17:12,210 DIEGO, AURORA BIOSCIENCE, THAT 1965 01:17:12,210 --> 01:17:14,379 HAD DEVELOPED A CELL-BASED ASSAY 1966 01:17:14,379 --> 01:17:16,314 WHERE THEY COULD MEASURE THE 1967 01:17:16,314 --> 01:17:18,850 FUNCTION OF THE CF PROTEIN, THE 1968 01:17:18,850 --> 01:17:20,719 OPENING AND CLOSING OF THE ION 1969 01:17:20,719 --> 01:17:21,186 CHANNEL. 1970 01:17:21,186 --> 01:17:24,656 AND THEY WERE GOING TO USE IT TO 1971 01:17:24,656 --> 01:17:26,958 SCREEN FOR DRUGS FOR CYSTIC 1972 01:17:26,958 --> 01:17:30,895 FIBROSIS BUT FELT THE MARKET WAS 1973 01:17:30,895 --> 01:17:34,699 BIG ENOUGH AND THEY WERE BACKING 1974 01:17:34,699 --> 01:17:35,800 OUT. 1975 01:17:35,800 --> 01:17:39,771 IN COMES THE CF FOUNDATION, A 1976 01:17:39,771 --> 01:17:42,407 PATIENT-ORGANIZED GROUP OF 1977 01:17:42,407 --> 01:17:45,410 PARENTS AND OTHER SUPPORTERS OF 1978 01:17:45,410 --> 01:17:48,913 PEOPLE WITH CYSTIC FIBROSIS. 1979 01:17:48,913 --> 01:17:52,183 THEY STARTED A FOR-PROFIT 1980 01:17:52,183 --> 01:17:52,951 FOUNDATION, WHICH NOW MANY OTHER 1981 01:17:52,951 --> 01:17:55,653 NOT FOR PROFITS HAVE MIMICKED, 1982 01:17:55,653 --> 01:18:00,625 BUT A FOR-PROFIT FOUNDATION THAT 1983 01:18:00,625 --> 01:18:03,495 RAISED AND PUT $150 MILLION INTO 1984 01:18:03,495 --> 01:18:06,097 VERTEX TO ENABLE THEM TO DEVELOP 1985 01:18:06,097 --> 01:18:08,266 THE FIRST TWO DRUGS THAT WOULD 1986 01:18:08,266 --> 01:18:12,003 TREAT A MAJORITY BUT NOT ALL OF 1987 01:18:12,003 --> 01:18:13,638 THE CF PATIENTS. 1988 01:18:13,638 --> 01:18:18,710 AND THE CF FOUNDATION DID IT 1989 01:18:18,710 --> 01:18:19,844 BECAUSE PRIOR TO THIS PROJECT, 1990 01:18:19,844 --> 01:18:23,181 THEY HAD SPENT ENORMOUS AMOUNTS 1991 01:18:23,181 --> 01:18:24,883 OF MONEY SUPPORTING ACADEMIC 1992 01:18:24,883 --> 01:18:25,316 RESEARCH. 1993 01:18:25,316 --> 01:18:27,852 THEY HAD VIRTUALLY EVERY PATIENT 1994 01:18:27,852 --> 01:18:32,123 GENOTYPE BUT HAD NO DRUG. 1995 01:18:32,123 --> 01:18:36,795 SO, THE COMMERCIAL AGREEMENT 1996 01:18:36,795 --> 01:18:40,198 ALLOWED FOR A ROYALTY STREAK TO 1997 01:18:40,198 --> 01:18:42,167 BE PASSED BACK TO THE FOUNDATION 1998 01:18:42,167 --> 01:18:43,701 IN THE SUCCESSFUL EVENT THE 1999 01:18:43,701 --> 01:18:45,837 DRUGS ACTUALLY WERE FDA 2000 01:18:45,837 --> 01:18:46,471 APPROVED. 2001 01:18:46,471 --> 01:18:49,140 SO, THE FOUNDATION STARTED 2002 01:18:49,140 --> 01:18:51,109 GETTING A ROYALTY STREAM THAT 2003 01:18:51,109 --> 01:18:54,612 THEY SOLD TO A HEDGE FUND CALLED 2004 01:18:54,612 --> 01:18:58,082 ROYALTY PHARMA, AND IN RETURN 2005 01:18:58,082 --> 01:18:59,684 FOR SELLING THE ROYALTY STREAM 2006 01:18:59,684 --> 01:19:05,256 THEY GOT IN CASH OVER $3 2007 01:19:05,256 --> 01:19:05,657 BILLION. 2008 01:19:05,657 --> 01:19:08,560 THE CF FOUNDATION, I'M A 2009 01:19:08,560 --> 01:19:10,895 CONSULTANT FOR THEM, CURRENTLY 2010 01:19:10,895 --> 01:19:12,297 IS DEVELOPING GENE THERAPIES NOT 2011 01:19:12,297 --> 01:19:16,201 JUST FOR CYSTIC FIBROSIS 2012 01:19:16,201 --> 01:19:17,535 ALTHOUGH IT IS THE MAIN FOCUS 2013 01:19:17,535 --> 01:19:19,838 BUT FOR OTHER DISEASES THAT 2014 01:19:19,838 --> 01:19:21,172 AFFECT THE LUNGS, TRYING TO 2015 01:19:21,172 --> 01:19:25,043 UNCOVER SOME OF THE BASIC 2016 01:19:25,043 --> 01:19:27,145 BIOLOGY LIKE WHAT ARE THE LUNG 2017 01:19:27,145 --> 01:19:28,413 STEM CELLS, SO FORTH. 2018 01:19:28,413 --> 01:19:35,687 IT'S REALLY A VERY GOOD EXAMPLE 2019 01:19:35,687 --> 01:19:37,322 OF TAKING ACADEMIC DEVELOPMENT, 2020 01:19:37,322 --> 01:19:39,924 THE BASIS FOR THE SCREENING, BUT 2021 01:19:39,924 --> 01:19:42,827 THE ACTUAL DRUG DEVELOPMENT WAS 2022 01:19:42,827 --> 01:19:44,896 DONE BY VERTEX CHEMISTS, IT WAS 2023 01:19:44,896 --> 01:19:47,432 NOT DONE IN AN ACADEMIC SETTING. 2024 01:19:47,432 --> 01:19:48,733 IT WAS TOO COMPLICATED. 2025 01:19:48,733 --> 01:19:54,472 SO IT GIVES YOU ONE EXAMPLE. 2026 01:19:54,472 --> 01:19:56,341 ED, YOU'RE ANOTHER EXAMPLE OF 2027 01:19:56,341 --> 01:19:59,978 TAKING DRUGS . 2028 01:19:59,978 --> 01:20:01,145 IN FACT ALL OF YOU ARE. 2029 01:20:01,145 --> 01:20:02,313 WE'LL GO IN ORDER. 2030 01:20:02,313 --> 01:20:03,281 GO AHEAD. 2031 01:20:03,281 --> 01:20:05,149 >> I WAS VERY FORTUNATE THAT THE 2032 01:20:05,149 --> 01:20:09,888 FIRST COMPANY I WORKED FOR WAS 2033 01:20:09,888 --> 01:20:12,257 GENZYME, BY HARVEY. 2034 01:20:12,257 --> 01:20:15,627 I WAS ABLE TO WORK ON FIVE 2035 01:20:15,627 --> 01:20:18,897 DIFFERENT DRUGS, ALL FOR 2036 01:20:18,897 --> 01:20:21,399 NEUROGENETIC DISEASES, PRIMARILY 2037 01:20:21,399 --> 01:20:22,634 IN LYSOSOMAL STORAGE, DEVELOPING 2038 01:20:22,634 --> 01:20:23,902 NEW THERAPIES. 2039 01:20:23,902 --> 01:20:26,170 ALL CAME FROM EITHER FROM THE 2040 01:20:26,170 --> 01:20:29,541 NIH, FROM MOUNT SINAI, FROM DUKE 2041 01:20:29,541 --> 01:20:30,375 UNIVERSITY. 2042 01:20:30,375 --> 01:20:32,277 BUT THE UNIVERSITIES THEMSELVES 2043 01:20:32,277 --> 01:20:34,379 WERE NOT ABLE, REALLY, TO MAKE A 2044 01:20:34,379 --> 01:20:34,746 PRODUCT. 2045 01:20:34,746 --> 01:20:37,782 AND TO TAKE IT TO THE NEXT 2046 01:20:37,782 --> 01:20:38,616 LEVEL. 2047 01:20:38,616 --> 01:20:39,817 MUCH TOO COMPLICATED. 2048 01:20:39,817 --> 01:20:44,589 THE MOST RECENT ONE I'VE BEEN 2049 01:20:44,589 --> 01:20:45,790 FOCUSED ON AT STOKE THERAPEUTICS 2050 01:20:45,790 --> 01:20:52,764 IS AN IDEA THAT CAME OUT OF COLD 2051 01:20:52,764 --> 01:20:53,831 SPRINGS HARBOR, ALSO WHERE 2052 01:20:53,831 --> 01:20:58,002 WALTER TALKED ABOUT, I GOT TO 2053 01:20:58,002 --> 01:21:02,140 KNOW ADRIAN KRAMER QUITE WELL, 2054 01:21:02,140 --> 01:21:05,543 HAD A POST DOC THAT BY CHANGING 2055 01:21:05,543 --> 01:21:07,345 SPLICING IN THE PRE-MESSENGER 2056 01:21:07,345 --> 01:21:12,383 RNA YOU COULD INCREASE AMOUNT OF 2057 01:21:12,383 --> 01:21:14,352 FULL LENGTH MESSENGER RNA, 2058 01:21:14,352 --> 01:21:15,386 INCREASING PROTEIN. 2059 01:21:15,386 --> 01:21:18,756 COULD WE USE THIS AS A PLATFORM 2060 01:21:18,756 --> 01:21:19,724 TO INCREASE THE MISSING 2061 01:21:19,724 --> 01:21:20,358 PROTEINS? 2062 01:21:20,358 --> 01:21:22,694 SO WE WENT AFTER A LOT OF 2063 01:21:22,694 --> 01:21:24,495 DISEASES THAT WERE DOMINANT 2064 01:21:24,495 --> 01:21:26,831 DISEASES, DIFFICULT TO GO AFTER, 2065 01:21:26,831 --> 01:21:28,433 YOU'RE ONLY MISSING 50% OF 2066 01:21:28,433 --> 01:21:29,834 PROTEIN BUT THAT CAUSES DISEASE. 2067 01:21:29,834 --> 01:21:31,302 SO THE QUESTION CAN YOU BRING 2068 01:21:31,302 --> 01:21:35,740 THE UP FROM 50 TO 100%? 2069 01:21:35,740 --> 01:21:38,843 SO, THE FIRST YEAR THE COMPANY 2070 01:21:38,843 --> 01:21:42,447 STARTED WAS ACTUALLY IN COLD 2071 01:21:42,447 --> 01:21:45,116 SPRINGS HARBOR TRYING TO PROVE 2072 01:21:45,116 --> 01:21:46,217 DOES THIS MECHANISM WORK. 2073 01:21:46,217 --> 01:21:48,653 TURNS OUT IT DOES. 2074 01:21:48,653 --> 01:21:50,755 WE'RE IN A PHASE 3 PROGRAM FOR 2075 01:21:50,755 --> 01:21:52,724 THE SYNDROME, THIS IS REALLY THE 2076 01:21:52,724 --> 01:21:55,126 FIRST TIME WHERE SOMEONE WAS 2077 01:21:55,126 --> 01:22:05,136 TRYING TO ADDRESS THE UNDERLYING 2078 01:22:05,136 --> 01:22:09,407 GENETIC CAUSE EPILEPSY, WITH A 2079 01:22:09,407 --> 01:22:11,175 LOT OF SIDE EFFECTS, YOU ALMOST 2080 01:22:11,175 --> 01:22:13,177 CREATE ANOTHER DISEASE. 2081 01:22:13,177 --> 01:22:19,550 WE HEARD THIS FROM FAMILIES, 2082 01:22:19,550 --> 01:22:20,985 MOTHERS, THEY ARE SLEEPING 18 2083 01:22:20,985 --> 01:22:23,621 HOURS A DAY, THAT'S WORSE THAN 2084 01:22:23,621 --> 01:22:28,926 THE SEIZURES. 2085 01:22:28,926 --> 01:22:29,827 CAN WE ADDRESS UNDERLYING 2086 01:22:29,827 --> 01:22:30,795 GENETIC CAUSE? 2087 01:22:30,795 --> 01:22:33,297 WE HEARD THIS FROM OTHER GROUPS, 2088 01:22:33,297 --> 01:22:35,466 TEN YEARS AGO IF YOU WOULD HAVE 2089 01:22:35,466 --> 01:22:39,637 TOLD ME AS A PEDIATRIC 2090 01:22:39,637 --> 01:22:41,039 NEUROLOGIST WE COULD IMPROV 2091 01:22:41,039 --> 01:22:43,441 DEVELOPMENT OF CHILDREN WHO HAVE 2092 01:22:43,441 --> 01:22:44,175 COGNITIVE AND BEHAVIORAL 2093 01:22:44,175 --> 01:22:48,179 PROBLEMS I WOULD HAVE THOUGHT IT 2094 01:22:48,179 --> 01:22:50,081 WAS IRREVERSIBLE, THAT SHIP 2095 01:22:50,081 --> 01:22:50,314 SAILED. 2096 01:22:50,314 --> 01:22:56,087 WHAT WE FOUND BY DOING THE 2097 01:22:56,087 --> 01:22:58,189 RESEARCH, FOR ANGELMAN'S 2098 01:22:58,189 --> 01:23:00,591 SYNDROME AND OTHERS, YOU CAN 2099 01:23:00,591 --> 01:23:01,893 ACTUALLY MAKE CHANGES, SEEING 2100 01:23:01,893 --> 01:23:03,828 90% IMPROVEMENT IN SEIZURE 2101 01:23:03,828 --> 01:23:04,829 CONTROL, IMPROVEMENTS IN 2102 01:23:04,829 --> 01:23:05,930 COGNITION AND BEHAVIOR THAT JUST 2103 01:23:05,930 --> 01:23:07,065 BLEW US AWAY. 2104 01:23:07,065 --> 01:23:09,000 WE DIDN'T THINK WE COULD 2105 01:23:09,000 --> 01:23:10,601 ACTUALLY GET THEM BETTER. 2106 01:23:10,601 --> 01:23:13,137 WE WERE SEEING IMPROVEMENT EVEN 2107 01:23:13,137 --> 01:23:14,872 IN OLDER ADOLESCENTS. 2108 01:23:14,872 --> 01:23:17,875 THE IDEA THAT NOW WE'RE AT A 2109 01:23:17,875 --> 01:23:22,180 POINT WITH USING ALL OF OUR 2110 01:23:22,180 --> 01:23:23,314 MOLECULAR GENETIC INFORMATION 2111 01:23:23,314 --> 01:23:26,484 WE'RE ABLE TO SPECIFICALLY MAKE 2112 01:23:26,484 --> 01:23:27,618 DRUGS THAT REALLY ARE 2113 01:23:27,618 --> 01:23:28,453 DISEASE-ALTERING FOR PATIENTS, 2114 01:23:28,453 --> 01:23:29,887 NOT JUST TREATING ONE SYNDROME 2115 01:23:29,887 --> 01:23:32,957 BUT THE ENTIRE PATIENT. 2116 01:23:32,957 --> 01:23:34,258 WE'RE AT SUCH AN EXCITING TIME. 2117 01:23:34,258 --> 01:23:36,260 ONE OF THE REASONS WHY IT'S SO 2118 01:23:36,260 --> 01:23:38,463 IMPORTANT TO CONTINUE THE NIH 2119 01:23:38,463 --> 01:23:40,098 FUNDING IS THAT IF WE WANT TO 2120 01:23:40,098 --> 01:23:41,866 CONTINUE TO MAKE ADVANCES, WE 2121 01:23:41,866 --> 01:23:42,934 NEED THAT BASIC INFRASTRUCTURE 2122 01:23:42,934 --> 01:23:45,002 OF SCIENCE IN ORDER TO MAKE THE 2123 01:23:45,002 --> 01:23:46,938 NEXT GENERATION OF MEDICINES AND 2124 01:23:46,938 --> 01:23:50,475 TRAIN THE NEXT GENERATION OF 2125 01:23:50,475 --> 01:23:50,775 SCIENTISTS. 2126 01:23:50,775 --> 01:23:55,513 THAT'S WHERE THIS NETWORK OF 2127 01:23:55,513 --> 01:23:56,914 PEOPLE IS SO CRITICAL, COMING 2128 01:23:56,914 --> 01:23:58,349 FROM THE PATIENT GROUPS, THE 2129 01:23:58,349 --> 01:23:59,417 ONES BEHIND THIS, SAYING WE NEED 2130 01:23:59,417 --> 01:24:00,318 THE THERAPY. 2131 01:24:00,318 --> 01:24:01,319 THIS IS WHAT'S WRONG, THIS IS 2132 01:24:01,319 --> 01:24:03,020 WHAT YOU NEED TO MAKE. 2133 01:24:03,020 --> 01:24:04,122 IT'S THE SCIENTISTS WHO 2134 01:24:04,122 --> 01:24:05,590 UNDERSTAND THE MECHANISM OF THE 2135 01:24:05,590 --> 01:24:05,957 DISEASE. 2136 01:24:05,957 --> 01:24:07,425 THEN IT'S THE DRUG DEVELOPERS 2137 01:24:07,425 --> 01:24:08,659 THAT MAKE THE PRODUCT AND THEY 2138 01:24:08,659 --> 01:24:11,562 HAVE TO WORK WITH THE FDA TO GET 2139 01:24:11,562 --> 01:24:12,163 IT APPROVED. 2140 01:24:12,163 --> 01:24:14,532 SO, IT IS THIS NETWORK OF 2141 01:24:14,532 --> 01:24:16,601 PEOPLE, THE ONLY WAY WE CAN COME 2142 01:24:16,601 --> 01:24:20,004 UP WITH BETTER THERAPIES FOR 2143 01:24:20,004 --> 01:24:20,671 PEOPLE. 2144 01:24:20,671 --> 01:24:23,875 >> BEFORE WE GO ON, ED, YOU 2145 01:24:23,875 --> 01:24:27,111 MENTIONED TWO USES OF 2146 01:24:27,111 --> 01:24:31,215 OLIGONUCLEOTIDES TO AEXPECT 2147 01:24:31,215 --> 01:24:33,151 SPLICING, SPINAL MUSCULAR DRUG 2148 01:24:33,151 --> 01:24:38,956 ATROPHY, YOU COME INTO A GENERIC 2149 01:24:38,956 --> 01:24:43,528 TECHNOLOGY THAT COULD BE USED 2150 01:24:43,528 --> 01:24:48,699 QUICKER, OR MORE RAPIDLY TO 2151 01:24:48,699 --> 01:24:50,468 TREAT OTHER DISEASES WE'RE 2152 01:24:50,468 --> 01:24:53,938 TALKING, SO EVERYONE 2153 01:24:53,938 --> 01:24:54,939 UNDERSTANDS, THAT'S A 2154 01:24:54,939 --> 01:24:55,506 HAPLOINSUFFICIENT GENETIC 2155 01:24:55,506 --> 01:25:00,945 DISORDER, ONE COPY OF THE GENE 2156 01:25:00,945 --> 01:25:02,146 IS INACTIVE. 2157 01:25:02,146 --> 01:25:05,449 SO 50% OF THE NORMAL AMOUNT OF 2158 01:25:05,449 --> 01:25:07,385 THE PROTEIN, ION CHANNEL, IS 2159 01:25:07,385 --> 01:25:08,252 INSUFFICIENT. 2160 01:25:08,252 --> 01:25:11,289 WHAT YOU CAN DO WITH SPLICING 2161 01:25:11,289 --> 01:25:13,124 REMARKABLY IS INCREASE THE 2162 01:25:13,124 --> 01:25:15,793 AMOUNT OF THAT MESSAGE TO MAKE 2163 01:25:15,793 --> 01:25:17,929 ENOUGH PROTEIN THAT YOU CAN 2164 01:25:17,929 --> 01:25:20,131 APPARENTLY REVERSE THE DISEASE. 2165 01:25:20,131 --> 01:25:21,399 IS THIS A GENERIC TECHNOLOGY? 2166 01:25:21,399 --> 01:25:24,836 >> YEAH, I THINK IT COULD BE. 2167 01:25:24,836 --> 01:25:28,239 I THINK WALTER MENTIONED ABOUT 2168 01:25:28,239 --> 01:25:31,843 THE TREATMENT OF SPINAL MUSCULAR 2169 01:25:31,843 --> 01:25:32,877 ATROPHY, DIFFERENT BECAUSE WE 2170 01:25:32,877 --> 01:25:34,278 WERE FORTUNATE, WE HAD A SECOND 2171 01:25:34,278 --> 01:25:36,814 COPY OF THE GENE, THAT ALMOST 2172 01:25:36,814 --> 01:25:43,154 NEVER HAPPENS. 2173 01:25:43,154 --> 01:25:46,457 SMN 2 WOULD SPLICE OUT EXON 7, 2174 01:25:46,457 --> 01:25:48,960 80% WASN'T WORKING. 2175 01:25:48,960 --> 01:25:50,561 WHAT BIOGEN AND ADRIAN KRAMER 2176 01:25:50,561 --> 01:25:56,834 FIGURED OUT IF YOU ENHANCE THE 2177 01:25:56,834 --> 01:25:59,737 INCLUSION OF EXON AND SMN 2 2178 01:25:59,737 --> 01:26:00,571 PROTEIN YOU REPAIR THE PROTEIN 2179 01:26:00,571 --> 01:26:04,108 AND JUST ABOUT CURE THE DISEASE. 2180 01:26:04,108 --> 01:26:06,244 WHAT WE LEARNED IN EXON 2181 01:26:06,244 --> 01:26:08,946 SKIPPING, WE IF THE FIRST 2182 01:26:08,946 --> 01:26:10,047 THERAPY FOR DUCHENNE, IF YOU 2183 01:26:10,047 --> 01:26:11,582 SKIM OUT ONE EXON YOU MIGHT BE 2184 01:26:11,582 --> 01:26:13,818 ABLE TO PUT IT BACK TOGETHER 2185 01:26:13,818 --> 01:26:14,185 AGAIN. 2186 01:26:14,185 --> 01:26:16,254 THE GENE OF COURSE HAS TO BE 2187 01:26:16,254 --> 01:26:18,890 READ, YOU HAVE TO TAKE IT FROM A 2188 01:26:18,890 --> 01:26:20,892 DNA TO RNA, THEN MAKE A PROTEIN 2189 01:26:20,892 --> 01:26:22,326 OUT OF IT. 2190 01:26:22,326 --> 01:26:24,262 IF IT'S NOT LINED UP, YOU CAN'T 2191 01:26:24,262 --> 01:26:26,097 READ IT ALL THE WAY THROUGH AND 2192 01:26:26,097 --> 01:26:27,431 YOU CAN'T MAKE A PROTEIN. 2193 01:26:27,431 --> 01:26:29,166 IF YOU CAN SPLICE OUT NORMAL 2194 01:26:29,166 --> 01:26:30,534 SECTION AND PUT IT BACK TOGETHER 2195 01:26:30,534 --> 01:26:31,836 THAT COULD WORK. 2196 01:26:31,836 --> 01:26:35,139 SO I THINK WHAT WE NOW KNOW AND 2197 01:26:35,139 --> 01:26:37,608 NOW THERE IS A LOT OF WORK 2198 01:26:37,608 --> 01:26:40,244 LOOKING AT THE UPSTREAM AND 2199 01:26:40,244 --> 01:26:43,214 DOWNSTREAM PART OF RNA, ACTUALLY 2200 01:26:43,214 --> 01:26:44,715 INCREASING TRANSLATION OF 2201 01:26:44,715 --> 01:26:45,750 PROTEIN. 2202 01:26:45,750 --> 01:26:49,387 WE HAVE ABILITY POTENTIALLY OF 2203 01:26:49,387 --> 01:26:51,255 INCREASING PROTEINS THAT COULD 2204 01:26:51,255 --> 01:26:51,589 BE IMPORTANT. 2205 01:26:51,589 --> 01:26:54,792 ONE WE'RE WORKING ON FOR AN EYE 2206 01:26:54,792 --> 01:26:57,194 DISEASE, WHERE WE'RE REPLACING A 2207 01:26:57,194 --> 01:26:57,862 PROTEIN, MITOCHONDRIAL PROTEIN, 2208 01:26:57,862 --> 01:26:59,497 BUT ONE OF THE THINGS WE FOUND 2209 01:26:59,497 --> 01:27:01,632 OUT IS THAT BY REPLACING THIS 2210 01:27:01,632 --> 01:27:02,833 PROTEIN EVEN IN NORMAL CELLS YOU 2211 01:27:02,833 --> 01:27:08,839 CAN INCREASE AMOUNT OF ENERGY 2212 01:27:08,839 --> 01:27:12,343 CELL HAS, COULD BE USED FOR 2213 01:27:12,343 --> 01:27:15,579 OTHER DISEASES, WE TALKED ABOUT 2214 01:27:15,579 --> 01:27:16,781 PARKINSON'S, ALZHEIMER'S, THE 2215 01:27:16,781 --> 01:27:19,216 CELL DIES, RUNS OUT OF ENERGY. 2216 01:27:19,216 --> 01:27:21,419 I THINK WHAT WE'RE SEEING NOW IS 2217 01:27:21,419 --> 01:27:23,654 PEOPLE ARE USING SOME RNA 2218 01:27:23,654 --> 01:27:25,256 TECHNOLOGY TO GO AFTER A LOT OF 2219 01:27:25,256 --> 01:27:27,258 LET'S SAY RARE DISEASES WHERE 2220 01:27:27,258 --> 01:27:29,360 YOU HAVE A HANDFUL OF PATIENTS, 2221 01:27:29,360 --> 01:27:31,462 AND TECHNOLOGY USED TO FIX THAT 2222 01:27:31,462 --> 01:27:31,696 DISEASE. 2223 01:27:31,696 --> 01:27:32,697 I THINK THERE'S GOING TO BE MORE 2224 01:27:32,697 --> 01:27:33,831 AND MORE OF THAT. 2225 01:27:33,831 --> 01:27:35,433 THE CHALLENGE WE'RE GOING TO 2226 01:27:35,433 --> 01:27:39,537 HAVE, HOW DO WE ACTUALLY PAY FOR 2227 01:27:39,537 --> 01:27:42,039 IT, BECAUSE EACH -- WE SAW THIS 2228 01:27:42,039 --> 01:27:47,311 AT MY OLD INSTITUTION AT CHOP 2229 01:27:47,311 --> 01:27:50,381 THEY TREATED A CHILD WITH A 2230 01:27:50,381 --> 01:27:51,415 DISEASE, A DEATH SENTENCE, THEY 2231 01:27:51,415 --> 01:27:54,185 WERE ABLE TO FIX THAT MUTATION, 2232 01:27:54,185 --> 01:27:55,286 IT WAS GREAT. 2233 01:27:55,286 --> 01:27:57,188 BUT I'M SURE IT COST SEVERAL 2234 01:27:57,188 --> 01:27:59,023 MILLION DOLLARS TO TREAT ONE 2235 01:27:59,023 --> 01:27:59,490 PATIENT. 2236 01:27:59,490 --> 01:28:01,425 SO YOU CAN'T DO THAT FOR 2237 01:28:01,425 --> 01:28:02,026 EVERYONE. 2238 01:28:02,026 --> 01:28:03,995 SO WE HAVE FIGURE OUT HOW DO WE 2239 01:28:03,995 --> 01:28:05,963 USE SOME OF THIS NEW TECHNOLOGY 2240 01:28:05,963 --> 01:28:08,332 TO TREAT A LOT OF DIFFERENT 2241 01:28:08,332 --> 01:28:09,633 PATIENTS ESPECIALLY WITH RARE 2242 01:28:09,633 --> 01:28:11,369 DISEASES IN A WAY THAT'S COST 2243 01:28:11,369 --> 01:28:13,137 EFFECTIVE THAT WE CAN AFFORD. 2244 01:28:13,137 --> 01:28:19,010 WE HAVEN'T QUITE FIGURED THAT 2245 01:28:19,010 --> 01:28:22,113 OUT. 2246 01:28:22,113 --> 01:28:23,714 >> VERY GOOD. 2247 01:28:23,714 --> 01:28:26,250 CRAIG, YOU GOT -- ALL THREE OF 2248 01:28:26,250 --> 01:28:27,952 YOU HAVE DIFFERENT PERSPECTIVES. 2249 01:28:27,952 --> 01:28:31,756 GIVE US AN EXAMPLE OF ONE THAT 2250 01:28:31,756 --> 01:28:31,956 WORKS. 2251 01:28:31,956 --> 01:28:33,924 >> THAT'S HARDER THAN ONES THAT 2252 01:28:33,924 --> 01:28:34,725 DON'T WORK. 2253 01:28:34,725 --> 01:28:36,027 I CAN TELL YOU CERTAINLY THERE'S 2254 01:28:36,027 --> 01:28:41,298 A RARE DISEASE THAT I WORK ON, I 2255 01:28:41,298 --> 01:28:42,500 WILL BRING IT UP, A LOT OF 2256 01:28:42,500 --> 01:28:43,567 FOUNDATIONS RUN INTO THIS 2257 01:28:43,567 --> 01:28:45,036 PROBLEM. 2258 01:28:45,036 --> 01:28:49,907 ONE OF MY SPECIALTIES IS 2259 01:28:49,907 --> 01:28:50,741 HEREDITARY SPASTIC PARAPLEGIA, 2260 01:28:50,741 --> 01:28:52,610 THERE'S 100 FORMS OF IT. 2261 01:28:52,610 --> 01:28:55,613 A LOT OF PATIENTS COME AND HAVE 2262 01:28:55,613 --> 01:28:57,515 THEIR OWN FOUNDATION, SO HOW DO 2263 01:28:57,515 --> 01:28:59,183 WE WORK WITH THE GROUP TO MOVE 2264 01:28:59,183 --> 01:29:00,851 THINGS FORWARD FOR EVERYONE? 2265 01:29:00,851 --> 01:29:03,454 I CAN GIVE EXAMPLES. 2266 01:29:03,454 --> 01:29:08,192 ONE THING THAT SPASTIC 2267 01:29:08,192 --> 01:29:11,595 PARAPLEGIC FOUNDATION, ORGANIZED 2268 01:29:11,595 --> 01:29:16,300 TO HAVE EXPERTISE IN CERTAIN 2269 01:29:16,300 --> 01:29:18,069 AREAS, WE NEED TO UNDERSTAND 2270 01:29:18,069 --> 01:29:20,037 WHAT DISEASES LOOK LIKE TO KNOW 2271 01:29:20,037 --> 01:29:21,439 IF OUR TREATMENTS ARE WORKING. 2272 01:29:21,439 --> 01:29:22,440 WE'VE BEEN DOING THAT. 2273 01:29:22,440 --> 01:29:29,146 BUT AT THE SAME TIME SOME RARER 2274 01:29:29,146 --> 01:29:31,882 FORMS OF THESE HUNDRED, THERE'S 2275 01:29:31,882 --> 01:29:33,117 GENE THERAPY. 2276 01:29:33,117 --> 01:29:43,094 A CHILD RECEIVED THERAPY, 2277 01:29:43,094 --> 01:29:44,495 RECESSIVE, THE DAD CREATED A 2278 01:29:44,495 --> 01:29:46,230 COMPANY SO OTHERS COULD GET THAT 2279 01:29:46,230 --> 01:29:46,597 ADVANTAGE. 2280 01:29:46,597 --> 01:29:48,466 WE HAVE TO MOVE THIS PROCESS 2281 01:29:48,466 --> 01:29:49,800 FORWARD QUICKER. 2282 01:29:49,800 --> 01:29:51,902 THAT'S ONE EXAMPLE WHERE IT'S 2283 01:29:51,902 --> 01:29:52,203 WORKED. 2284 01:29:52,203 --> 01:29:53,737 ANOTHER ONE WITH CHILDREN I TAKE 2285 01:29:53,737 --> 01:30:04,348 CARE OF, WORKING WITH THE 2286 01:30:04,348 --> 01:30:04,782 FOUNDATION, ANTISENSE 2287 01:30:04,782 --> 01:30:05,950 OLIGONUCLEOTIDES, ASOs, WITH 2288 01:30:05,950 --> 01:30:06,217 CHILDREN. 2289 01:30:06,217 --> 01:30:10,087 EVEN ONCE WE GET IT TO WORK HOW 2290 01:30:10,087 --> 01:30:12,490 DO WE INCREASE THE SCALE AND 2291 01:30:12,490 --> 01:30:13,991 BENEFIT TO MORE PATIENTS? 2292 01:30:13,991 --> 01:30:16,560 FUNDING IS PART BUT A LOT OF 2293 01:30:16,560 --> 01:30:20,231 CREATIVITY IN HOW WE MOVE FROM 2294 01:30:20,231 --> 01:30:21,699 SCIENCE TO CLINICAL APPLICATION 2295 01:30:21,699 --> 01:30:22,900 IS IMPORTANT TOO. 2296 01:30:22,900 --> 01:30:23,801 THERE'S LOTS OF WAYS FOR 2297 01:30:23,801 --> 01:30:25,069 DIFFERENT TYPES OF DISEASES. 2298 01:30:25,069 --> 01:30:27,738 THOSE ARE JUST TWO EXAMPLES IN 2299 01:30:27,738 --> 01:30:31,509 THIS BROAD GROUP OF HEREDITARY 2300 01:30:31,509 --> 01:30:32,877 SPASTIC PARAPLEGIAS. 2301 01:30:32,877 --> 01:30:35,379 AGAIN, AS A CLOSING POINT, 2302 01:30:35,379 --> 01:30:37,014 REALLY THE PATIENT IS THE TRUE 2303 01:30:37,014 --> 01:30:37,448 DRIVER. 2304 01:30:37,448 --> 01:30:38,849 THEY TAUGHT US ABOUT THE 2305 01:30:38,849 --> 01:30:39,750 DISEASE. 2306 01:30:39,750 --> 01:30:41,352 THEY HELPED US MAKE THE RIGHT 2307 01:30:41,352 --> 01:30:42,486 CONNECTIONS AND HAVE BEEN 2308 01:30:42,486 --> 01:30:44,788 CRITICAL IN MOVING FROM BASIC 2309 01:30:44,788 --> 01:30:47,791 SCIENCE TO ACTUAL TREATMENTS FOR 2310 01:30:47,791 --> 01:30:51,462 PATIENTS. 2311 01:30:51,462 --> 01:30:53,164 >> THANK YOU. 2312 01:30:53,164 --> 01:30:55,099 POOJA, YOU HAD EXPERIENCE IN A 2313 01:30:55,099 --> 01:30:56,901 DIFFERENT AREA. 2314 01:30:56,901 --> 01:30:58,536 >> YEAH, THOUGH SOME PRINCIPLES 2315 01:30:58,536 --> 01:30:59,870 APPLY REGARDLESS OF THE DISEASE. 2316 01:30:59,870 --> 01:31:02,973 I'LL TELL YOU ABOUT KIND OF 2317 01:31:02,973 --> 01:31:04,608 THREE PATHWAYS THAT STAND OUT TO 2318 01:31:04,608 --> 01:31:06,944 ME WHEN THINKING ABOUT TAKING 2319 01:31:06,944 --> 01:31:08,679 SCIENCE AND BRINGING IT TO THE 2320 01:31:08,679 --> 01:31:09,146 PATIENT. 2321 01:31:09,146 --> 01:31:12,249 THE FIRST ONE IS THE SUPPORT 2322 01:31:12,249 --> 01:31:14,051 FROM NINDS TO ACTUALLY -- YOU'VE 2323 01:31:14,051 --> 01:31:14,885 DONE THE SCIENCE. 2324 01:31:14,885 --> 01:31:16,253 HERE IS THE EXAMPLE I'LL GIVE. 2325 01:31:16,253 --> 01:31:22,126 MANY OF YOU HAVE HERDS OF tPA, 2326 01:31:22,126 --> 01:31:23,527 A CLOT BUSTING DRUG, IF GIVEN IN 2327 01:31:23,527 --> 01:31:25,863 A FEW HOURS YOU CAN MAKE A 2328 01:31:25,863 --> 01:31:26,797 SIGNIFICANT IMPACT AND REVERSE 2329 01:31:26,797 --> 01:31:28,165 STROKE FOR PEOPLE. 2330 01:31:28,165 --> 01:31:30,868 I GOT MY CHANCE TO GET MY PUBLIC 2331 01:31:30,868 --> 01:31:32,236 HEALTH MESSAGE IN, IF YOU DIDN'T 2332 01:31:32,236 --> 01:31:33,137 KNOW THAT. 2333 01:31:33,137 --> 01:31:35,272 THERE'S THE OPPORTUNITY TO MAKE 2334 01:31:35,272 --> 01:31:38,209 BETTER DRUGS, SO ONE MIGHT HAVE 2335 01:31:38,209 --> 01:31:44,415 CLOSE COLLEAGUES, GUY REID, DEAN 2336 01:31:44,415 --> 01:31:46,350 AND CARDIOLOGIST, UNIVERSITY OF 2337 01:31:46,350 --> 01:31:50,087 ARIZONA, DEVELOPED WITH FUNDING 2338 01:31:50,087 --> 01:31:55,359 A NEW MONOCLONAL ANTIBODY, 2339 01:31:55,359 --> 01:31:57,161 INHIBITS INHIBITOR OF OUR 2340 01:31:57,161 --> 01:31:58,295 BODY'S tPA. 2341 01:31:58,295 --> 01:31:59,630 WE MAKE SMALL AMOUNTS. 2342 01:31:59,630 --> 01:32:01,498 DEVELOPED THAT THROUGH NIH 2343 01:32:01,498 --> 01:32:03,934 FUNDING, A SMALL BUSINESS GRANT 2344 01:32:03,934 --> 01:32:04,368 THROUGH NINDS. 2345 01:32:04,368 --> 01:32:07,137 PUT TOGETHER A COMPANY, PUT 2346 01:32:07,137 --> 01:32:08,038 TOGETHER THE MANUFACTURING, AND 2347 01:32:08,038 --> 01:32:10,174 THEN GAVE ME A CALL AND SAID 2348 01:32:10,174 --> 01:32:12,276 HEY, I WANT TO TEST THIS IN 2349 01:32:12,276 --> 01:32:15,279 STROKE PATIENTS NOW, MY DREAM. 2350 01:32:15,279 --> 01:32:16,647 AND WE STARTED DEVELOPING A 2351 01:32:16,647 --> 01:32:18,015 CLINICAL TRIAL DESIGN AND WE 2352 01:32:18,015 --> 01:32:20,484 CAME UP WITH ONE THAT WE HAD A 2353 01:32:20,484 --> 01:32:22,152 LOT OF FUN CREATING WITH SOME 2354 01:32:22,152 --> 01:32:23,520 NOVEL ELEMENTS TO MAKE IT 2355 01:32:23,520 --> 01:32:23,988 EFFICIENT. 2356 01:32:23,988 --> 01:32:26,056 WE'RE CURRENTLY DOING THE DOSE 2357 01:32:26,056 --> 01:32:27,758 FINDING STUDY RIGHT NOW. 2358 01:32:27,758 --> 01:32:38,302 THAT'S AN EXAMPLE OF TAKING THE 2359 01:32:38,502 --> 01:32:41,572 NIH PATHWAY FROM SCIENCE TO 2360 01:32:41,572 --> 01:32:44,875 CLINICAL TRIAL. 2361 01:32:44,875 --> 01:32:47,544 StrokeNet IS ONE EXAMPLE OF 2362 01:32:47,544 --> 01:32:48,679 A NETWORK. 2363 01:32:48,679 --> 01:32:52,249 YOU MAY HAVE HEARD OF NEURO 2364 01:32:52,249 --> 01:32:53,951 NEXT, IN AREAS OTHER THAN 2365 01:32:53,951 --> 01:32:55,786 STROKE. 2366 01:32:55,786 --> 01:32:57,087 GOING BACK TO StrokeNet, 2367 01:32:57,087 --> 01:32:58,622 WE -- BECAUSE WE HAVE THIS 2368 01:32:58,622 --> 01:33:00,057 ROBUST INFRASTRUCTURE WE HAD THE 2369 01:33:00,057 --> 01:33:01,425 OPPORTUNITY TO CREATE WHAT'S 2370 01:33:01,425 --> 01:33:02,626 CALLED A PLATFORM TRIAL. 2371 01:33:02,626 --> 01:33:05,062 THE IDEA WITH THE PLATFORM TRIAL 2372 01:33:05,062 --> 01:33:09,400 IS IT'S ONE MASTER PROTOCOL, AND 2373 01:33:09,400 --> 01:33:11,502 YOU ARE ABLE TO HAVE ONE GOAL, 2374 01:33:11,502 --> 01:33:13,404 OUR GOAL IS TO IMPROVE OUTCOMES 2375 01:33:13,404 --> 01:33:15,205 WITH PATIENTS WITH VERY LARGE 2376 01:33:15,205 --> 01:33:16,106 STROKES. 2377 01:33:16,106 --> 01:33:17,574 AND THEN YOU'RE ABLE TO BRING 2378 01:33:17,574 --> 01:33:20,144 THERAPIES IN AND OUT OF THAT 2379 01:33:20,144 --> 01:33:21,578 SAME PROTOCOL, SO YOU'RE NOT 2380 01:33:21,578 --> 01:33:24,048 WRITING A NEW TRIAL EVERY TIME. 2381 01:33:24,048 --> 01:33:25,482 IT'S ONE PLATFORM THAT'S 2382 01:33:25,482 --> 01:33:25,949 ENDURING. 2383 01:33:25,949 --> 01:33:27,318 WHAT'S EXCITING IS NINDS HAS 2384 01:33:27,318 --> 01:33:28,352 ENERGIZED THIS BECAUSE THEY SAID 2385 01:33:28,352 --> 01:33:29,953 WE'RE NOT GOING TO ANSWER ALL 2386 01:33:29,953 --> 01:33:31,555 THESE QUESTIONS YOU GUYS HAVE, 2387 01:33:31,555 --> 01:33:33,190 WE HAVE MANY OTHER DISEASES TO 2388 01:33:33,190 --> 01:33:33,424 STUDY. 2389 01:33:33,424 --> 01:33:36,293 WE NEED SOMETHING MORE 2390 01:33:36,293 --> 01:33:39,396 EFFICIENT.. 2391 01:33:39,396 --> 01:33:40,731 IT WORKS MORE EFFICIENTLY AND 2392 01:33:40,731 --> 01:33:42,800 TURNS OUT A LOT OF COMPANIES ARE 2393 01:33:42,800 --> 01:33:44,635 NOW KNOCKING ON OUR DOOR TO RUN 2394 01:33:44,635 --> 01:33:46,170 THEIR TRIALS THROUGH THIS 2395 01:33:46,170 --> 01:33:46,503 PLATFORM. 2396 01:33:46,503 --> 01:33:48,672 I THINK THAT'S ANOTHER EXAMPLE. 2397 01:33:48,672 --> 01:33:50,574 AND MY UNDERSTANDING AND OTHERS 2398 01:33:50,574 --> 01:33:55,913 MAY KNOW MORE HERE BUT NEURONEX 2399 01:33:55,913 --> 01:34:00,984 HAS OPPORTUNITIES FOR INDUSTRY 2400 01:34:00,984 --> 01:34:03,354 ENGAGEMENT. 2401 01:34:03,354 --> 01:34:05,222 AND THERAPEUTIC DEVELOPMENT, 2402 01:34:05,222 --> 01:34:07,491 ANOTHER INITIATIVE, CLINICAL 2403 01:34:07,491 --> 01:34:09,626 TRIALS IN RODENTS, THE IDEA HAS 2404 01:34:09,626 --> 01:34:11,028 BEEN THAT, YEAH, WE OPEN 2405 01:34:11,028 --> 01:34:12,396 ARTERIES FOR PEOPLE WITH STROKE 2406 01:34:12,396 --> 01:34:14,198 BUT THERE ARE OTHER MEDICATIONS 2407 01:34:14,198 --> 01:34:15,733 THAT CAN PROTECT THE BRAIN AND 2408 01:34:15,733 --> 01:34:17,434 KEEP IT FROM DYING WHILE WE'RE 2409 01:34:17,434 --> 01:34:19,136 WORKING ON OPENING UP THE 2410 01:34:19,136 --> 01:34:20,637 ARTERIES BUT THERE WERE A SLEW 2411 01:34:20,637 --> 01:34:22,239 OF THEM. 2412 01:34:22,239 --> 01:34:25,142 THEY CREATED A STRUCTURE 2413 01:34:25,142 --> 01:34:26,944 LITERALLY RANDOMIZED TRIALS OF 2414 01:34:26,944 --> 01:34:28,445 RODENTS, TRYING AGENTS, FOUND A 2415 01:34:28,445 --> 01:34:30,714 WINNER, NOW PUTTING THAT WINNER 2416 01:34:30,714 --> 01:34:32,216 IN OUR PLATFORM, ANOTHER 2417 01:34:32,216 --> 01:34:33,984 EFFICIENT WAY OF NOT HAVING 2418 01:34:33,984 --> 01:34:35,519 SPENT SO MANY YEARS AND SO MANY 2419 01:34:35,519 --> 01:34:36,787 TENS OF MILLIONS OF DOLLARS 2420 01:34:36,787 --> 01:34:38,455 THROUGH EACH ONE OF THOSE 2421 01:34:38,455 --> 01:34:38,889 AGENTS. 2422 01:34:38,889 --> 01:34:42,192 I'LL STOP THERE AND PASS THINGS 2423 01:34:42,192 --> 01:34:47,498 ON. 2424 01:34:47,498 --> 01:34:50,968 >> SO, I WAS GOING TO INTRODUCE 2425 01:34:50,968 --> 01:34:53,137 YOU -- NO, NO, NO, IT'S FINE. 2426 01:34:53,137 --> 01:34:55,272 IT'S OFTEN SAID THAT MEDICAL 2427 01:34:55,272 --> 01:34:59,410 DEVICES ARE EASIER TO GET TO 2428 01:34:59,410 --> 01:35:01,612 MARKET, FASTER TO DEVELOP. 2429 01:35:01,612 --> 01:35:05,616 BUT GO AHEAD. 2430 01:35:05,616 --> 01:35:13,457 >> WELL, SOME OF IT IS TRUE. 2431 01:35:13,457 --> 01:35:14,792 REGULATORY PATHWAYS PEOPLE WHO 2432 01:35:14,792 --> 01:35:17,694 HAVE EXPERIENCED IT CAN TELL 2433 01:35:17,694 --> 01:35:19,930 YOU, YEAH, REGULATORY PATHWAYS 2434 01:35:19,930 --> 01:35:22,332 TO GET DRUGS TO MARKET IS MUCH 2435 01:35:22,332 --> 01:35:22,800 LONGER. 2436 01:35:22,800 --> 01:35:26,236 BUT ALSO DEPENDS ON WHAT DEVICES 2437 01:35:26,236 --> 01:35:28,439 YOU'RE TALKING ABOUT, HOW 2438 01:35:28,439 --> 01:35:32,910 INVASIVE THE DEVICES ARE. 2439 01:35:32,910 --> 01:35:37,848 SO, MEDICAL DEVICES CAN BE A WAY 2440 01:35:37,848 --> 01:35:40,918 OF DELIVERING DRUGS, THEY COULD 2441 01:35:40,918 --> 01:35:44,354 BE CHEMICAL DEVICES, THEY COULD 2442 01:35:44,354 --> 01:35:45,422 BE HARDWARES. 2443 01:35:45,422 --> 01:35:48,425 AND, YOU KNOW, THEY ALSO, YOU 2444 01:35:48,425 --> 01:35:53,130 KNOW, HAVE -- YOU KNOW, PLAY A 2445 01:35:53,130 --> 01:35:55,365 ROLE IN DELIVERING GENETIC 2446 01:35:55,365 --> 01:35:56,600 THERAPY AND SO FORTH TO THE 2447 01:35:56,600 --> 01:35:58,869 SITES THAT YOU WANT TO TARGET. 2448 01:35:58,869 --> 01:36:00,637 EXAMPLE IS THE BRAIN. 2449 01:36:00,637 --> 01:36:05,309 ONE OF THE BIG HURDLES, WE HAVE 2450 01:36:05,309 --> 01:36:07,911 HAD OVER THE YEARS, DEVELOPMENT 2451 01:36:07,911 --> 01:36:10,948 OF CRISPR TECHNOLOGY, AND ALL 2452 01:36:10,948 --> 01:36:16,253 THE OTHER WAYS TO MANIPULATE, 2453 01:36:16,253 --> 01:36:18,188 ALTER, YOU KNOW, GENES IS 2454 01:36:18,188 --> 01:36:20,791 GETTING THEM TO THE BRAIN. 2455 01:36:20,791 --> 01:36:26,830 SPECIFIC REGIONS OF THE BRAIN. 2456 01:36:26,830 --> 01:36:29,800 AND SO DEVICES, DEVELOPING 2457 01:36:29,800 --> 01:36:33,136 GENETIC THERAPIES, YOU KNOW, CAN 2458 01:36:33,136 --> 01:36:35,305 INTERWOVEN AT TIMES. 2459 01:36:35,305 --> 01:36:39,309 BUT, YOU KNOW, THEN YOU HAVE TO 2460 01:36:39,309 --> 01:36:40,878 DEAL WITH THE BOTTLENECKS WITH 2461 01:36:40,878 --> 01:36:43,514 THE DEVELOPMENT OF THE GENETIC 2462 01:36:43,514 --> 01:36:44,715 THERAPY AND ALSO BOTTLENECKS OF 2463 01:36:44,715 --> 01:36:46,683 THE MEDICAL DEVICE. 2464 01:36:46,683 --> 01:36:52,656 SO IT'S -- AND IT'S NOT TRIVIAL 2465 01:36:52,656 --> 01:36:54,892 THE NIH, YOU KNOW, WHICH WE JUST 2466 01:36:54,892 --> 01:37:00,197 TALKED ABOUT IS ONE AVENUE THAT 2467 01:37:00,197 --> 01:37:03,800 HAS DE-RISKING A LOT OF THESE 2468 01:37:03,800 --> 01:37:04,701 EARLY CHALLENGES. 2469 01:37:04,701 --> 01:37:09,573 AND I CAN TALK ABOUT A 2470 01:37:09,573 --> 01:37:12,109 BLUEPRINT, MedTech, THERE'S 2471 01:37:12,109 --> 01:37:14,645 ALSO THE BLUEPRINT NEURAL TECH 2472 01:37:14,645 --> 01:37:15,646 PATHWAYS ALSO. 2473 01:37:15,646 --> 01:37:17,581 WE ARE INTERESTED IN THE 2474 01:37:17,581 --> 01:37:19,182 COMMERCIAL AVAILABILITY OF THE 2475 01:37:19,182 --> 01:37:19,816 PRODUCTS. 2476 01:37:19,816 --> 01:37:26,056 BUT WE ALSO KNOW THAT INVESTORS 2477 01:37:26,056 --> 01:37:27,991 WANT A DRUG OR INTERVENTION THAT 2478 01:37:27,991 --> 01:37:31,228 HAS A LARGE MARKET. 2479 01:37:31,228 --> 01:37:34,798 SO THE NIH HAS A PANEL OF 2480 01:37:34,798 --> 01:37:37,568 EVALUATORS, THE NEW 2481 01:37:37,568 --> 01:37:37,901 INTERVENTIONS. 2482 01:37:37,901 --> 01:37:40,437 WE ALSO LOOK AT THE DISEASE, 2483 01:37:40,437 --> 01:37:46,109 UNMET NEEDS, AND WE CONSIDER THE 2484 01:37:46,109 --> 01:37:52,316 FACT THAT SCHOLARS OR INNOVATORS 2485 01:37:52,316 --> 01:37:53,450 MAY ENCOUNTER CHALLENGES IN 2486 01:37:53,450 --> 01:37:55,786 INVESTMENTS SO WE CONSIDER THE 2487 01:37:55,786 --> 01:37:57,487 FACT THAT THERE IS A SMALL, YOU 2488 01:37:57,487 --> 01:38:00,791 KNOW, THIS IS A SMALL DISEASE 2489 01:38:00,791 --> 01:38:07,664 POPULATION, THEY MAY NOT BE ABLE 2490 01:38:07,664 --> 01:38:09,866 TO GENERATE FUNDS, WE DO SUPPORT 2491 01:38:09,866 --> 01:38:13,437 THEM TO DE-RISK SOME OF THE 2492 01:38:13,437 --> 01:38:15,105 PROBLEMS TO HELP, YOU KNOW, 2493 01:38:15,105 --> 01:38:16,139 DRIVE THIS TECHNOLOGY OR 2494 01:38:16,139 --> 01:38:18,508 TREATMENT TO THE MARKET. 2495 01:38:18,508 --> 01:38:20,844 SO THAT'S ONE AVENUE THAT PEOPLE 2496 01:38:20,844 --> 01:38:24,381 CAN, YOU KNOW, SERIOUSLY 2497 01:38:24,381 --> 01:38:25,148 CONSIDER. 2498 01:38:25,148 --> 01:38:28,318 BACK TO YOUR QUESTION, YOU'RE 2499 01:38:28,318 --> 01:38:32,990 RIGHT, THE GENERAL CONSENSUS IS 2500 01:38:32,990 --> 01:38:34,891 THAT, YOU KNOW, IT TAKES MEDICAL 2501 01:38:34,891 --> 01:38:36,493 DEVICES SHORTER TO GET TO THE 2502 01:38:36,493 --> 01:38:39,696 MARKET BUT MOST DEVICES THAT WE 2503 01:38:39,696 --> 01:38:41,498 SEE A REALLY COMBINATION. 2504 01:38:41,498 --> 01:38:42,766 YOU KNOW, SO COMBINATION OF DRUG 2505 01:38:42,766 --> 01:38:44,201 AND SO FORTH. 2506 01:38:44,201 --> 01:38:46,370 SO IT'S REALLY HARD, IN TERMS OF 2507 01:38:46,370 --> 01:38:48,639 BRAIN, TO AVOID, YOU KNOW, HOW 2508 01:38:48,639 --> 01:38:50,340 DO YOU GET THIS TREATMENT TO 2509 01:38:50,340 --> 01:38:58,382 SPECIFIC PART OF THE BRAIN. 2510 01:38:58,382 --> 01:39:01,718 >> LET ME TURN TO A RELATED BUT 2511 01:39:01,718 --> 01:39:04,254 DIFFERENT TOPIC WHICH IS PATIENT 2512 01:39:04,254 --> 01:39:04,521 ADVOCACY. 2513 01:39:04,521 --> 01:39:09,159 SO A LOT OF YOU ARE FROM THESE 2514 01:39:09,159 --> 01:39:13,063 GROUPS, AND YOU WANT TO GET 2515 01:39:13,063 --> 01:39:16,366 PHARMACEUTICAL COMPANIES AND 2516 01:39:16,366 --> 01:39:19,436 ACADEMIC LABS INTERESTED IN 2517 01:39:19,436 --> 01:39:20,537 STUDYING YOUR DISEASE. 2518 01:39:20,537 --> 01:39:24,174 HOW TO GO ABOUT IT? 2519 01:39:24,174 --> 01:39:32,849 ANY OF YOU WANT TO GIVE IT A 2520 01:39:32,849 --> 01:39:33,183 TRY? 2521 01:39:33,183 --> 01:39:33,417 OKAY. 2522 01:39:33,417 --> 01:39:34,818 >> WE WORK WITH MANY OF YOU. 2523 01:39:34,818 --> 01:39:37,688 ONE OF THE MOST EFFECTIVE WAYS 2524 01:39:37,688 --> 01:39:39,923 IS OBVIOUSLY EARLY STAGE FUNDING 2525 01:39:39,923 --> 01:39:40,891 FOR JUNIOR INVESTIGATORS 2526 01:39:40,891 --> 01:39:42,192 BECAUSE, YOU KNOW, A LOT OF US 2527 01:39:42,192 --> 01:39:44,094 START WORKING ON SOMETHING AND 2528 01:39:44,094 --> 01:39:46,063 THEN WE SPEND THE LEST OF OUR 2529 01:39:46,063 --> 01:39:47,230 LIVES WORKING ON IT. 2530 01:39:47,230 --> 01:39:48,765 IF YOU CAN INVEST IN JUNIOR 2531 01:39:48,765 --> 01:39:50,200 FACULTY WHEN THEY ARE JUST 2532 01:39:50,200 --> 01:39:52,369 STARTING OUT AND REALLY TRYING 2533 01:39:52,369 --> 01:39:53,270 TO DIFFERENTIATE, TRYING TO FIND 2534 01:39:53,270 --> 01:39:54,604 WHERE THEIR CAREERS ARE GOING TO 2535 01:39:54,604 --> 01:39:56,606 GO THAT CAN BE EFFECTIVE BECAUSE 2536 01:39:56,606 --> 01:39:57,841 OFTEN YOU'LL HAVE SOMEBODY 2537 01:39:57,841 --> 01:39:58,975 DEVOTED TO YOUR ILLNESS FOR THE 2538 01:39:58,975 --> 01:40:01,144 REST OF THEIR CAREERS. 2539 01:40:01,144 --> 01:40:02,779 I THINK THAT'S A VERY GOOD WAY. 2540 01:40:02,779 --> 01:40:05,115 WE'VE ALSO FOUND IN MANY WAYS 2541 01:40:05,115 --> 01:40:06,283 THAT THE PATIENT FOUNDATIONS 2542 01:40:06,283 --> 01:40:07,551 OFTEN BRING US TOGETHER, JUST 2543 01:40:07,551 --> 01:40:09,119 LIKE THE NIH DOES IN CERTAIN 2544 01:40:09,119 --> 01:40:11,221 WAYS FOR DIFFERENT GROUPS. 2545 01:40:11,221 --> 01:40:12,956 FOR SMALLER GROUPS LIKE RARE 2546 01:40:12,956 --> 01:40:13,757 DISEASES PATIENT GROUPS BRING 2547 01:40:13,757 --> 01:40:15,826 PEOPLE TOGETHER AND THAT CAN 2548 01:40:15,826 --> 01:40:18,995 ENERGIZE EVERYONE AND GET PEOPLE 2549 01:40:18,995 --> 01:40:20,864 EXCITED AND SOMETIMES ONCE 2550 01:40:20,864 --> 01:40:22,532 OUTSIDERS SEE OR PEOPLE AREN'T 2551 01:40:22,532 --> 01:40:23,700 MAYBE IN THE NEUROLOGY COMMUNITY 2552 01:40:23,700 --> 01:40:25,535 START TO SEE WHAT PROTEINS ARE 2553 01:40:25,535 --> 01:40:28,171 BEING WORKED ON, WHAT PATHWAYS, 2554 01:40:28,171 --> 01:40:29,473 THAT BRINGS IN BASIC SCIENTISTS 2555 01:40:29,473 --> 01:40:31,241 AND THEY BECOME INTERESTED. 2556 01:40:31,241 --> 01:40:37,347 SO ENGAGING IT'S A -- ENGAGING 2557 01:40:37,347 --> 01:40:40,450 LOTS OF TYPES OF PEOPLE, REALLY 2558 01:40:40,450 --> 01:40:41,351 ENGAGING SCIENTISTS WHO MIGHT 2559 01:40:41,351 --> 01:40:42,753 HAVE A SHARED INTEREST. 2560 01:40:42,753 --> 01:40:44,020 AGAIN, IT'S BEEN BROUGHT UP 2561 01:40:44,020 --> 01:40:48,291 BEFORE, A LOT OF DISEASES 2562 01:40:48,291 --> 01:40:50,060 CROSS-FERTILIZE OTHERS, IF 2563 01:40:50,060 --> 01:40:51,595 YOU'RE WORKING ON ALS YOU'LL 2564 01:40:51,595 --> 01:40:52,329 LEARN SOMETHING ABOUT 2565 01:40:52,329 --> 01:40:53,463 PARKINSON'S DISEASE OR EXAMPLES 2566 01:40:53,463 --> 01:40:54,030 LIKE THAT. 2567 01:40:54,030 --> 01:40:55,932 BRINGING PEOPLE TOGETHER AND 2568 01:40:55,932 --> 01:40:57,200 SUPPORTING EARLY STAGE 2569 01:40:57,200 --> 01:40:57,901 INVESTIGATORS I GUESS WOULD BE 2570 01:40:57,901 --> 01:40:59,703 TWO OF THE MAIN WAYS THAT I 2571 01:40:59,703 --> 01:41:04,541 THINK ARE VERY HELPFUL. 2572 01:41:04,541 --> 01:41:05,308 >> THERE ARE OPPORTUNITIES WHEN 2573 01:41:05,308 --> 01:41:06,777 YOU'RE DEALING IN RARE DISEASES 2574 01:41:06,777 --> 01:41:08,979 TO TAKE ADVANTAGE OF THE FACT 2575 01:41:08,979 --> 01:41:11,748 THAT THE SAME TYPE OF DRUG MIGHT 2576 01:41:11,748 --> 01:41:13,150 BE POTENTIALLY TESTABLE IN 2577 01:41:13,150 --> 01:41:13,583 MULTIPLE DISEASES. 2578 01:41:13,583 --> 01:41:16,119 AND THAT CAN BE A REAL 2579 01:41:16,119 --> 01:41:18,188 OPPORTUNITY TO BRING PEOPLE 2580 01:41:18,188 --> 01:41:19,189 TOGETHER, EVEN WITHIN THE SAME 2581 01:41:19,189 --> 01:41:21,224 TRIAL AND SORT OF GET THE POWER 2582 01:41:21,224 --> 01:41:24,294 IN NUMBERS. 2583 01:41:24,294 --> 01:41:25,362 >> I CAN CHIME IN. 2584 01:41:25,362 --> 01:41:27,964 I THINK ONE OF THE THINGS THAT'S 2585 01:41:27,964 --> 01:41:30,433 BEEN VERY INTERESTING IS WHEN 2586 01:41:30,433 --> 01:41:33,570 SOME OF THESE PATIENT ADVOCACY 2587 01:41:33,570 --> 01:41:34,905 GROUPS REALLY EDUCATE A COMPANY 2588 01:41:34,905 --> 01:41:35,906 ABOUT A DISEASE BECAUSE MOST OF 2589 01:41:35,906 --> 01:41:39,409 THE TIME THE COMPANIES ARE NOT 2590 01:41:39,409 --> 01:41:44,948 NECESSARILY AWARE OF EVERYTHING 2591 01:41:44,948 --> 01:41:48,318 WE'VE HAD THAT WITH THE 2592 01:41:48,318 --> 01:41:49,252 FOUNDATION, INSTRUMENTAL IN 2593 01:41:49,252 --> 01:41:50,954 HELPING US, INFORMING US WHAT IS 2594 01:41:50,954 --> 01:41:52,856 THE NATURAL HISTORY, THE THINGS 2595 01:41:52,856 --> 01:41:54,825 WE NEED TO ADDRESS, THEY HELPED 2596 01:41:54,825 --> 01:41:55,792 US ON TRIAL DESIGN. 2597 01:41:55,792 --> 01:41:59,696 WHAT WOULD BE TOO BURDENSOME. 2598 01:41:59,696 --> 01:42:02,532 ANOTHER EXAMPLE WAS THE SIN GAB 2599 01:42:02,532 --> 01:42:04,000 ONE FOUNDATION. 2600 01:42:04,000 --> 01:42:06,002 WE LOOKED AT IT, FIVE YEARS AGO, 2601 01:42:06,002 --> 01:42:07,470 WE DIDN'T THINK THERE WERE 2602 01:42:07,470 --> 01:42:11,208 ENOUGH PATIENTS TO DO A CLINICAL 2603 01:42:11,208 --> 01:42:12,042 TRIAL. 2604 01:42:12,042 --> 01:42:17,147 THERE WAS THE SIN GAP RESEARCH 2605 01:42:17,147 --> 01:42:21,251 FOUNDATION, MIKE WAS RELENTLESS. 2606 01:42:21,251 --> 01:42:22,219 NOT ENOUGH PATIENTS 2607 01:42:22,219 --> 01:42:23,720 HERE'S THE PATIENTS WE FOUND. 2608 01:42:23,720 --> 01:42:23,920 OH. 2609 01:42:23,920 --> 01:42:25,455 HOW ABOUT IF WE DO THE NATURAL 2610 01:42:25,455 --> 01:42:26,890 HISTORY, SO YOU KNOW WHAT THE 2611 01:42:26,890 --> 01:42:28,925 NATURAL HISTORY IS. 2612 01:42:28,925 --> 01:42:30,260 AND THEY FUNDED AN ANIMAL MODEL 2613 01:42:30,260 --> 01:42:32,662 THAT WE'RE USING NOW TO TEST ONE 2614 01:42:32,662 --> 01:42:33,997 OF OUR CLINICAL CANDIDATES THAT 2615 01:42:33,997 --> 01:42:38,602 WE HOPE TO GET BY NEXT YEAR INTO 2616 01:42:38,602 --> 01:42:40,237 THE CLINIC. 2617 01:42:40,237 --> 01:42:41,972 THAT FOUNDATION WAS ABSOLUTELY 2618 01:42:41,972 --> 01:42:43,173 INSTRUMENTAL, FIRST GETTING 2619 01:42:43,173 --> 01:42:44,941 PEOPLE AWARE THIS DISEASE 2620 01:42:44,941 --> 01:42:46,776 EXISTS, AND THERE ARE A NUMBER 2621 01:42:46,776 --> 01:42:48,678 OF PATIENTS AFFECTED, BUT ALSO 2622 01:42:48,678 --> 01:42:50,947 UNDERSTANDING THE NATURAL 2623 01:42:50,947 --> 01:42:51,681 HISTORY. 2624 01:42:51,681 --> 01:42:53,016 AND GIVING SMALL GRANTS, YOU 2625 01:42:53,016 --> 01:42:55,886 KNOW, AS WE HEARD FROM JIM 2626 01:42:55,886 --> 01:42:59,890 BEFORE, ABOUT, YOU KNOW, FUNDING 2627 01:42:59,890 --> 01:43:01,591 EARLY STAGE RESEARCH. 2628 01:43:01,591 --> 01:43:10,634 THEY WERE THE DRIVING FORCE TO 2629 01:43:10,634 --> 01:43:11,768 REALLY ADVANCE THERAPIES. 2630 01:43:11,768 --> 01:43:14,604 >> NOW, I CAN JUST ADD ONE SMALL 2631 01:43:14,604 --> 01:43:20,677 SORT OF TECHNICAL ASPECT. 2632 01:43:20,677 --> 01:43:23,113 NIH, AMONG OTHER ORGANIZATIONS, 2633 01:43:23,113 --> 01:43:24,814 COLLECTED HUGE AMOUNTS OF 2634 01:43:24,814 --> 01:43:26,816 LIBRARIES OF DRUGS AND DRUG-LIKE 2635 01:43:26,816 --> 01:43:28,652 MOLECULES AND CAN BE SCREENED BY 2636 01:43:28,652 --> 01:43:30,253 HIGH-THROUGHPUT ASSAYS. 2637 01:43:30,253 --> 01:43:34,024 THE LIMITING FACTOR IS GENERALLY 2638 01:43:34,024 --> 01:43:35,892 THE ASSAY. 2639 01:43:35,892 --> 01:43:40,497 AND JUST EXPANDING ON WHAT WAS 2640 01:43:40,497 --> 01:43:41,665 SAID ABOUT YOUNG INVESTIGATORS, 2641 01:43:41,665 --> 01:43:44,768 FINDING SOMEONE WHO NOT JUST CAN 2642 01:43:44,768 --> 01:43:45,835 UNDERSTAND YOUR DISEASE BUT 2643 01:43:45,835 --> 01:43:49,005 FIGURE OUT A WAY OF MEASURING IT 2644 01:43:49,005 --> 01:43:51,107 IN A HIGH-THROUGHPUT WAY SO YOU 2645 01:43:51,107 --> 01:43:54,010 CAN SCREEN TENS OF THOUSANDS OF 2646 01:43:54,010 --> 01:43:55,245 COMPOUNDS TO SEE WHETHER BY 2647 01:43:55,245 --> 01:44:02,085 CHANCE ONE OF THEM MAY WORK IS 2648 01:44:02,085 --> 01:44:04,888 OFTEN A WAY TO GET A THERAPY 2649 01:44:04,888 --> 01:44:05,322 QUICKLY. 2650 01:44:05,322 --> 01:44:07,257 MANY OF THE ONES AT LEAST A FEW 2651 01:44:07,257 --> 01:44:10,493 OF THE LIBRARIES I KNOW HAVE 2652 01:44:10,493 --> 01:44:11,161 ALREADY UNDERGONE CLINICAL 2653 01:44:11,161 --> 01:44:17,634 TESTING AND THEY ARE KNOWN TO BE 2654 01:44:17,634 --> 01:44:18,001 SAFE. 2655 01:44:18,001 --> 01:44:21,738 IT DEPENDS A GREAT DEAL ON THE 2656 01:44:21,738 --> 01:44:24,441 SPECIFIC DISEASE, BUT THERE ARE 2657 01:44:24,441 --> 01:44:27,911 THESE NEW WAYS OF RAPIDLY 2658 01:44:27,911 --> 01:44:30,513 SCREENING COMPOUNDS. 2659 01:44:30,513 --> 01:44:32,382 AND FURTHERMORE, THERE ARE A 2660 01:44:32,382 --> 01:44:34,184 NUMBER OF CONTRACT RESEARCH 2661 01:44:34,184 --> 01:44:36,119 ORGANIZATIONS, MOST OF THE 2662 01:44:36,119 --> 01:44:40,623 CHEMISTRY NOW IS DONE IN FOREIGN 2663 01:44:40,623 --> 01:44:41,491 COUNTRIES. 2664 01:44:41,491 --> 01:44:44,060 AND YOU CONTRACT OUT THE 2665 01:44:44,060 --> 01:44:46,663 DEVELOPMENT OF SMALL MOLECULE 2666 01:44:46,663 --> 01:44:49,099 DRUGS TO BIND TO OR ACT ON A 2667 01:44:49,099 --> 01:44:49,933 SPECIFIC PROTEIN. 2668 01:44:49,933 --> 01:44:54,838 SO IF YOU HAVE AN ASSAY FOR A 2669 01:44:54,838 --> 01:44:57,173 PROTEIN, IT IS IMPOSSIBLE TO GET 2670 01:44:57,173 --> 01:44:59,376 A SMALL MOLECULE THAT YOU COULD 2671 01:44:59,376 --> 01:45:01,878 THEN TEST IN AN ANIMAL AND 2672 01:45:01,878 --> 01:45:04,280 ULTIMATELY A PERSON, IN A 2673 01:45:04,280 --> 01:45:06,583 RELATIVELY SHORT TIME. 2674 01:45:06,583 --> 01:45:08,151 AND I'M CURIOUS, DO YOU GUYS 2675 01:45:08,151 --> 01:45:10,353 HAVE COMMENTS ON THAT SORT OF 2676 01:45:10,353 --> 01:45:10,754 THING? 2677 01:45:10,754 --> 01:45:13,123 >> YEAH, WE HAD DONE ACTUALLY 2678 01:45:13,123 --> 01:45:15,225 SOME COLLABORATIVE WORK WITH THE 2679 01:45:15,225 --> 01:45:17,694 NIH, BECAUSE IT WAS LOOKING AT 2680 01:45:17,694 --> 01:45:19,496 ONE OF THE DRUGS WE DEVELOPED 2681 01:45:19,496 --> 01:45:23,767 FOR DRIVE A SYNDROME, COULD IT 2682 01:45:23,767 --> 01:45:29,439 WORK IN OTHER FORMS OF EPILEPSY 2683 01:45:29,439 --> 01:45:30,940 THEY HAVE A SYSTEM TO TEST THE 2684 01:45:30,940 --> 01:45:35,211 DRUG, COULD IT WORK IN OTHERS 2685 01:45:35,211 --> 01:45:35,745 FORMS. 2686 01:45:35,745 --> 01:45:37,881 WE JUST GAVE THEM THE DRUG AND 2687 01:45:37,881 --> 01:45:41,518 THEY COULD TEST, COULD THIS BE 2688 01:45:41,518 --> 01:45:42,786 USED IN OTHER INDICATIONS, SO 2689 01:45:42,786 --> 01:45:45,321 VERY VALUABLE. 2690 01:45:45,321 --> 01:45:48,158 >> I'LL ADD THE IMPORTANCE TO 2691 01:45:48,158 --> 01:45:52,328 EMPHASIZE IMPORTANCE OF NIH 2692 01:45:52,328 --> 01:45:53,296 FUNDING BASIC RESEARCH, THROUGH 2693 01:45:53,296 --> 01:45:54,397 DE NOVO DRUG DESIGN, YOU DON'T 2694 01:45:54,397 --> 01:45:55,865 HAVE TO SCREEN. 2695 01:45:55,865 --> 01:45:59,202 THINK ABOUT THE CHEMICAL SPACE, 2696 01:45:59,202 --> 01:46:00,537 ITS INFINITE ALMOST. 2697 01:46:00,537 --> 01:46:04,207 WHAT ARE THE ODDS WE ONLY 2698 01:46:04,207 --> 01:46:06,910 COVERED A FRACTION, BUT WITH ALL 2699 01:46:06,910 --> 01:46:07,410 THE COMPUTER STRUCTURAL 2700 01:46:07,410 --> 01:46:08,111 PREDICTIONS NOW IF YOU 2701 01:46:08,111 --> 01:46:10,013 UNDERSTAND A LOT OF BASIC 2702 01:46:10,013 --> 01:46:11,714 BIOLOGY, WHERE YOU WANT TO 2703 01:46:11,714 --> 01:46:12,982 TARGET, YOU CAN MAKE DE NOVO 2704 01:46:12,982 --> 01:46:15,785 DESIGN AND THERE'S EVEN WAYS TO 2705 01:46:15,785 --> 01:46:16,453 SCREEN WITH USING ARTIFICIAL 2706 01:46:16,453 --> 01:46:17,554 INTELLIGENCE METHODS. 2707 01:46:17,554 --> 01:46:19,089 SO THERE'S A LOT OF WAYS WE CAN 2708 01:46:19,089 --> 01:46:22,625 GET THROUGH SOME EARLY HURDLES, 2709 01:46:22,625 --> 01:46:23,893 EVEN FOR RARE DISEASES, 2710 01:46:23,893 --> 01:46:25,495 UNDERSTANDING BASIC BIOLOGY IS 2711 01:46:25,495 --> 01:46:27,397 CRITICAL TO FIND THE 2712 01:46:27,397 --> 01:46:29,232 DISEASE-MODIFYING THERAPIES THAT 2713 01:46:29,232 --> 01:46:32,535 ARE IMPORTANT. 2714 01:46:32,535 --> 01:46:34,070 >> WE'RE GETTING NEAR THE END. 2715 01:46:34,070 --> 01:46:38,041 I'D LIKE TO OPEN THIS UP TO 2716 01:46:38,041 --> 01:46:40,577 QUESTIONS FROM THE AUDIENCE. 2717 01:46:40,577 --> 01:46:42,679 I'M VERY INTERESTED IN WHAT YOU 2718 01:46:42,679 --> 01:46:45,148 GUYS WOULD LIKE TO KNOW ABOUT 2719 01:46:45,148 --> 01:46:47,550 THE SCIENCE AND TAKING THE 2720 01:46:47,550 --> 01:46:56,292 SCIENCE INTO COMMERCE. 2721 01:46:56,292 --> 01:47:06,669 >> [OFF MICROPHONE] 2722 01:47:06,870 --> 01:47:09,606 , IF I'M NOT MISTAKEN A THIRD OF 2723 01:47:09,606 --> 01:47:12,108 THE YOUNG PEOPLE HAVE LEFT 2724 01:47:12,108 --> 01:47:15,078 SCIENCE WITHIN FIVE YEARS. 2725 01:47:15,078 --> 01:47:17,614 SO, HOW DO WE MAKE SURE THAT 2726 01:47:17,614 --> 01:47:19,048 THAT INVESTMENT ACTUALLY PAYS 2727 01:47:19,048 --> 01:47:19,782 OFF? 2728 01:47:19,782 --> 01:47:21,284 >> I CAN START WITH THAT. 2729 01:47:21,284 --> 01:47:23,253 THE OTHERS WILL HAVE MORE. 2730 01:47:23,253 --> 01:47:24,654 >> HOW DO WE KEEP TRAINING AND 2731 01:47:24,654 --> 01:47:25,889 KEEP THEM IN SCIENCE? 2732 01:47:25,889 --> 01:47:28,057 >> AGAIN, THERE'S A LOT OF 2733 01:47:28,057 --> 01:47:29,292 REALLY TALENTED PEOPLE, THERE 2734 01:47:29,292 --> 01:47:30,426 REALLY ARE FUNDING CHALLENGES 2735 01:47:30,426 --> 01:47:33,029 EARLY ON. 2736 01:47:33,029 --> 01:47:34,497 AGAIN, FOUNDATIONS ARE CRITICAL, 2737 01:47:34,497 --> 01:47:35,565 ASPECTS OF EARLY FUNDING. 2738 01:47:35,565 --> 01:47:38,701 SO IS THE NIH IN TERMS OF EARLY 2739 01:47:38,701 --> 01:47:40,703 AWARDS LIKE K AWARDS. 2740 01:47:40,703 --> 01:47:42,906 INSTITUTIONS LIKE OURS HAVE TO 2741 01:47:42,906 --> 01:47:44,040 DO MORE SUPPORTING JUNIOR 2742 01:47:44,040 --> 01:47:45,141 FACULTY BECAUSE YOU'RE RIGHT, 2743 01:47:45,141 --> 01:47:47,610 WE'RE LOSING A LOT OF TALENTED 2744 01:47:47,610 --> 01:47:48,545 PEOPLE. 2745 01:47:48,545 --> 01:47:49,345 IT'S VERY EXPENSIVE TO GET 2746 01:47:49,345 --> 01:47:50,346 PEOPLE TO THAT POINT. 2747 01:47:50,346 --> 01:47:52,549 ONCE THEY DROP OFF IT'S HARD TO 2748 01:47:52,549 --> 01:47:53,116 COME BACK. 2749 01:47:53,116 --> 01:47:55,351 I THINK IT'S ABSOLUTELY CRITICAL 2750 01:47:55,351 --> 01:47:56,686 THAT NOT ONLY FOUNDATIONS, THE 2751 01:47:56,686 --> 01:47:59,222 NIH, BUT ALSO OUR OWN 2752 01:47:59,222 --> 01:48:00,557 INSTITUTIONS STEP UP AND MAKE 2753 01:48:00,557 --> 01:48:02,659 SURE WE SUPPORT OUR JUNIOR 2754 01:48:02,659 --> 01:48:03,793 FACULTY MORE BECAUSE WITHOUT 2755 01:48:03,793 --> 01:48:05,161 THEM REALLY EVERYTHING WILL COME 2756 01:48:05,161 --> 01:48:06,162 TO A HALT. 2757 01:48:06,162 --> 01:48:08,331 >> I THINK WHAT HAPPENS IS YOU 2758 01:48:08,331 --> 01:48:09,499 SEE THIS TRANSITION, PEOPLE WILL 2759 01:48:09,499 --> 01:48:11,034 GET A TRAINING GRANT. 2760 01:48:11,034 --> 01:48:12,535 YOU'VE GOT TO FIRST THE FIRST 2761 01:48:12,535 --> 01:48:15,104 R01 TO SECURE YOUR FUNDING TO 2762 01:48:15,104 --> 01:48:16,272 CONTINUE. 2763 01:48:16,272 --> 01:48:17,540 THERE'S SUCH AN EMPHASIS ON 2764 01:48:17,540 --> 01:48:19,809 CLINICAL CARE, SO MUCH PRESSURE 2765 01:48:19,809 --> 01:48:21,010 THAT THE UNIVERSITIES PUT ON 2766 01:48:21,010 --> 01:48:22,345 THESE JUNIOR FACULTY, YOU SHOULD 2767 01:48:22,345 --> 01:48:23,947 DO BOTH, YOU KNOW. 2768 01:48:23,947 --> 01:48:25,682 AND I'VE HAD THAT PRESSURE. 2769 01:48:25,682 --> 01:48:28,218 I HAD TO BE VERY FIRM, NO, I 2770 01:48:28,218 --> 01:48:29,986 NEED 70% OF MY TIME PROTECTED TO 2771 01:48:29,986 --> 01:48:32,288 STAY IN THE LAB SO I CAN GET MY 2772 01:48:32,288 --> 01:48:32,589 GRANT. 2773 01:48:32,589 --> 01:48:34,090 IF I'M DOING 50% OF CLINICAL 2774 01:48:34,090 --> 01:48:35,758 WORK THAT'S NOT ENOUGH TIME TO 2775 01:48:35,758 --> 01:48:36,559 GET MY GRANT. 2776 01:48:36,559 --> 01:48:38,962 YOU HAVE TO BE ABLE TO PROTECT 2777 01:48:38,962 --> 01:48:40,797 THESE PEOPLE TO ALLOW THEM TO DO 2778 01:48:40,797 --> 01:48:42,465 THE RESEARCH THAT THEIR CAREERS 2779 01:48:42,465 --> 01:48:43,833 CAN GROW. 2780 01:48:43,833 --> 01:48:45,401 >> I'LL MAKE A COUPLE COMMENTS. 2781 01:48:45,401 --> 01:48:48,438 IN StrokeNet WE HAVE A 2782 01:48:48,438 --> 01:48:48,838 TRAINING PROGRAM. 2783 01:48:48,838 --> 01:48:51,107 WE HAND PICK PEOPLE WHO ARE 2784 01:48:51,107 --> 01:48:53,977 REALLY EXCITED ABOUT RESEARCH. 2785 01:48:53,977 --> 01:48:55,545 WE'VE HAD GREAT TURNOUTS, 75% 2786 01:48:55,545 --> 01:48:56,879 STAYING INVOLVED AT LEAST 2787 01:48:56,879 --> 01:48:59,315 ENROLLING IN TRIALS, HALF 2788 01:48:59,315 --> 01:49:00,550 APPLYING FOR NIH GRANTS, GREAT 2789 01:49:00,550 --> 01:49:01,284 STATISTICS. 2790 01:49:01,284 --> 01:49:03,987 I KNOW IT'S A TOUGH TIME OF 2791 01:49:03,987 --> 01:49:05,922 UNCERTAINTY, OBVIOUSLY THIS IS A 2792 01:49:05,922 --> 01:49:07,390 SHAKY TIME BUT I HAVE TO BELIEVE 2793 01:49:07,390 --> 01:49:09,292 THAT'S GOING TO PASS. 2794 01:49:09,292 --> 01:49:11,060 REGARDSLESS, WE WANTED TO 2795 01:49:11,060 --> 01:49:16,633 UNDERSCORE THE POINT THAT 2796 01:49:16,633 --> 01:49:17,734 FOUNDATIONAL SUPPORTS, WORKING 2797 01:49:17,734 --> 01:49:18,968 DIRECTLY, FOR EXAMPLE THE 2798 01:49:18,968 --> 01:49:20,770 INSTITUTION I'M AT, AT YALE, 2799 01:49:20,770 --> 01:49:22,205 WORKING ON CREATING A SITUATION 2800 01:49:22,205 --> 01:49:24,073 WHERE WE SEE THE MOST PROMISING 2801 01:49:24,073 --> 01:49:29,545 TALENT AND INVEST IN THEM 2802 01:49:29,545 --> 01:49:30,513 DIRECTLY THROUGH PHILANTHROPIC 2803 01:49:30,513 --> 01:49:30,713 FUNDS. 2804 01:49:30,713 --> 01:49:33,783 IN YOU KNOW AN AREA, YOU WANT TO 2805 01:49:33,783 --> 01:49:35,885 ASSIST WITH INVESTING YOU COULD 2806 01:49:35,885 --> 01:49:39,389 WORK WITH INSTITUTIONS AS WELL 2807 01:49:39,389 --> 01:49:44,927 TO CREATE THAT PATHWAY. 2808 01:49:44,927 --> 01:49:48,564 SOMETIMES IT'S NOT A HUGE SCALE 2809 01:49:48,564 --> 01:49:50,733 OF MONEY BUT ENOUGH TO STAY ON 2810 01:49:50,733 --> 01:49:51,734 THE RESEARCH TRACK AND HAVE 2811 01:49:51,734 --> 01:49:53,169 STABILITY FOR THE NEXT FIVE 2812 01:49:53,169 --> 01:49:53,369 YEARS. 2813 01:49:53,369 --> 01:49:55,271 >> THE PROBLEM IS ACUTE IN 2814 01:49:55,271 --> 01:49:57,674 RESEARCH UNIVERSITIES THAT ARE 2815 01:49:57,674 --> 01:49:58,641 NOT MEDICALLY ATTACHED. 2816 01:49:58,641 --> 01:50:02,912 SUCH AS MY OWN AT M.I.T. 2817 01:50:02,912 --> 01:50:06,382 THE YOUNG FACULTY MAY BE 2818 01:50:06,382 --> 01:50:08,651 BRILLIANTLY EXPERIENCED IN HOT 2819 01:50:08,651 --> 01:50:10,520 NEW TECHNIQUES, NEW WAYS OF GENE 2820 01:50:10,520 --> 01:50:13,156 THERAPY, BUT THEY HAVE NO IDEA 2821 01:50:13,156 --> 01:50:18,061 OF THE DISEASES THAT COULD BE 2822 01:50:18,061 --> 01:50:18,661 TREATED. 2823 01:50:18,661 --> 01:50:22,865 WHAT WE DON'T DO A GOOD JOB OF 2824 01:50:22,865 --> 01:50:27,437 IS EDUCATING THE PhDs IN 2825 01:50:27,437 --> 01:50:29,572 HUMAN DISEASE IN GENERAL, SO 2826 01:50:29,572 --> 01:50:33,076 THAT WHEN A FOUNDATION OR GROUP 2827 01:50:33,076 --> 01:50:34,610 OF PATIENTS WANT TO FUND SOMEONE 2828 01:50:34,610 --> 01:50:37,980 WHO COULD WORK ON A DISEASE, 2829 01:50:37,980 --> 01:50:41,317 THERE'S NO WAY OF CONNECTING THE 2830 01:50:41,317 --> 01:50:41,718 PEOPLE. 2831 01:50:41,718 --> 01:50:43,853 AND I DON'T HAVE A SIMPLE 2832 01:50:43,853 --> 01:50:44,287 ANSWER. 2833 01:50:44,287 --> 01:50:47,523 BUT IT'S BEEN A PROBLEM FOR A 2834 01:50:47,523 --> 01:50:48,624 LONG, LONG TIME. 2835 01:50:48,624 --> 01:50:51,794 UNLESS YOU'RE TRAINED IN A 2836 01:50:51,794 --> 01:50:55,365 PARTICULAR AREA, YOU WOULDN'T 2837 01:50:55,365 --> 01:50:56,899 KNOW THE DISEASE. 2838 01:50:56,899 --> 01:51:00,536 >> A QUICK FOLLOW-UP TO THAT. 2839 01:51:00,536 --> 01:51:03,473 WE COULD WALK TO M.I.T. FROM 2840 01:51:03,473 --> 01:51:04,707 MASS GENERAL. 2841 01:51:04,707 --> 01:51:05,675 AGAIN, OUR INSTITUTIONS HAVE TO 2842 01:51:05,675 --> 01:51:07,110 DO A BETTER JOB. 2843 01:51:07,110 --> 01:51:11,314 I COULD WALK TO HARVEY'S LAB. 2844 01:51:11,314 --> 01:51:16,753 WE SHOULD DO IT MORE. 2845 01:51:16,753 --> 01:51:18,855 >> I THINK WE'VE LOST TRACK OF 2846 01:51:18,855 --> 01:51:20,556 WHAT I WAS GOING TO SAY. 2847 01:51:20,556 --> 01:51:22,792 GOING OFF TRACK. 2848 01:51:22,792 --> 01:51:25,595 BUT I'M JILL WOOD, MY COMPANY IS 2849 01:51:25,595 --> 01:51:27,363 PHOENIX NEXT, I CAME FROM THE 2850 01:51:27,363 --> 01:51:32,068 PATIENT ORGANIZATION ADVOCACY 2851 01:51:32,068 --> 01:51:34,203 WITH MY FOUNDATION, SO BEING 2852 01:51:34,203 --> 01:51:36,439 HERE FOR 15 YEARS NOW, I THINK A 2853 01:51:36,439 --> 01:51:40,042 LOT OF PEOPLE IN THIS ROOM ARE 2854 01:51:40,042 --> 01:51:41,477 NEW, AND DON'T KNOW WHAT 2855 01:51:41,477 --> 01:51:42,345 HIGH-THROUGHPUT SCREENING IS AND 2856 01:51:42,345 --> 01:51:44,847 DON'T KNOW WHAT LIBRARIES ARE, 2857 01:51:44,847 --> 01:51:46,549 DON'T KNOW WHAT ASSAY 2858 01:51:46,549 --> 01:51:47,884 DEVELOPMENT IS. 2859 01:51:47,884 --> 01:51:49,719 SO I THINK MAYBE TO EDUCATE SOME 2860 01:51:49,719 --> 01:51:52,088 OF THE NEW PEOPLE HERE MAYBE IT 2861 01:51:52,088 --> 01:51:56,325 WOULD BE GOOD TO EXPLAIN WHAT 2862 01:51:56,325 --> 01:51:59,429 HIGH-THROUGHPUT SCREENING IS. 2863 01:51:59,429 --> 01:52:09,739 >> I CAN DO IT. 2864 01:52:10,606 --> 01:52:11,941 OFTEN -- THERE ARE MANY WAYS OF 2865 01:52:11,941 --> 01:52:15,511 DOING IT BUT THE MOST COMMON IS 2866 01:52:15,511 --> 01:52:20,149 YOU HAVE A DISH, A CULTURE DISH, 2867 01:52:20,149 --> 01:52:23,453 WITH ROUGHLY 100 LITTLE TINY 2868 01:52:23,453 --> 01:52:24,220 CULTURES. 2869 01:52:24,220 --> 01:52:26,956 AND YOU ADD A DIFFERENT DRUG TO 2870 01:52:26,956 --> 01:52:27,690 EACH ONE. 2871 01:52:27,690 --> 01:52:29,258 EACH OF THE LITTLE TINY CULTURES 2872 01:52:29,258 --> 01:52:31,394 OF CELLS. 2873 01:52:31,394 --> 01:52:34,630 YOU CAN DO THIS ON A HUNDRED 2874 01:52:34,630 --> 01:52:35,731 DISHES, SAY YOU HAVE 10,000 2875 01:52:35,731 --> 01:52:36,699 DRUGS BEING SCREENED. 2876 01:52:36,699 --> 01:52:38,968 YOU HAVE TO HAVE A VERY QUICK 2877 01:52:38,968 --> 01:52:41,604 WAY OF RECOGNIZING WHETHER 2878 01:52:41,604 --> 01:52:43,172 THERE'S AN EFFECTIVE RESPONSE TO 2879 01:52:43,172 --> 01:52:44,106 THE CELL. 2880 01:52:44,106 --> 01:52:48,411 OFTEN THE CELLS CAN BE GENERALLY 2881 01:52:48,411 --> 01:52:49,412 GENETICALLY ENGINEERED SUCH THAT 2882 01:52:49,412 --> 01:52:52,248 IF A PARTICULAR PROTEIN IS 2883 01:52:52,248 --> 01:52:56,352 ACTIVATED, THE CELL TURNS RED. 2884 01:52:56,352 --> 01:53:00,456 SOMETHING LIKE THAT. 2885 01:53:00,456 --> 01:53:04,760 SIMILARLY, YOU CAN ASK IF I 2886 01:53:04,760 --> 01:53:05,895 INHIBITED A PARTICULAR GENE 2887 01:53:05,895 --> 01:53:09,999 WOULD THAT HELP MY DISEASE? 2888 01:53:09,999 --> 01:53:11,868 AND THE NEW CRISPR TECHNOLOGY 2889 01:53:11,868 --> 01:53:15,371 ALLOWS YOU TO DO THAT. 2890 01:53:15,371 --> 01:53:17,073 THAT IS, YOU GENETICALLY 2891 01:53:17,073 --> 01:53:20,877 ENGINEER THE CELL AND PUT THEM, 2892 01:53:20,877 --> 01:53:24,447 AGAIN, IN THESE CULTURE DISHES 2893 01:53:24,447 --> 01:53:26,315 WITH NEARLY 100 DIFFERENT 2894 01:53:26,315 --> 01:53:29,485 CULTURES, AND EACH GROUP OF 2895 01:53:29,485 --> 01:53:32,421 CELLS GETS A DIFFERENT CRISPR 2896 01:53:32,421 --> 01:53:32,822 RNA. 2897 01:53:32,822 --> 01:53:35,057 AND YOU KNOW WHAT GENE IS BEING 2898 01:53:35,057 --> 01:53:37,627 INLIBERTIED IN THAT CELL, YOU 2899 01:53:37,627 --> 01:53:42,565 CAN SEE WHETHER THERE'S AN 2900 01:53:42,565 --> 01:53:43,099 EFFECT. 2901 01:53:43,099 --> 01:53:45,034 SO, THERE ARE NEW TECHNOLOGIES 2902 01:53:45,034 --> 01:53:47,904 THAT ALLOW YOU TO SCREEN LOTS OF 2903 01:53:47,904 --> 01:53:49,138 THINGS VERY QUICKLY. 2904 01:53:49,138 --> 01:53:56,045 YOU CAN SCREEN GENES, YOU CAN 2905 01:53:56,045 --> 01:53:59,048 SCREEN SMALL MOLECULES. 2906 01:53:59,048 --> 01:54:05,154 AND I DON'T KNOW -- WELL, THIS 2907 01:54:05,154 --> 01:54:10,660 IS WHERE YOU NEED TO -- THE 2908 01:54:10,660 --> 01:54:11,627 LIBRARIES ARE AVAILABLE. 2909 01:54:11,627 --> 01:54:13,129 YOU CAN ORDER THEM. 2910 01:54:13,129 --> 01:54:15,765 MANY INSTITUTIONS HAVE THEM. 2911 01:54:15,765 --> 01:54:18,334 THE KEY IS DEVELOPING THE ASSAY 2912 01:54:18,334 --> 01:54:21,504 WHICH IS YOU NEED TO KNOW WHAT 2913 01:54:21,504 --> 01:54:23,005 THE GENE AND PROTEIN DO, WHETHER 2914 01:54:23,005 --> 01:54:25,508 YOU WANT TO JUST MEASURE THE 2915 01:54:25,508 --> 01:54:27,643 PROTEIN ITSELF OR YOU WANT TO 2916 01:54:27,643 --> 01:54:30,246 MEASURE THE PROTEIN IN A LIVING 2917 01:54:30,246 --> 01:54:30,613 CELL. 2918 01:54:30,613 --> 01:54:33,282 AND IF SO, IS IT A BRAIN CELL, 2919 01:54:33,282 --> 01:54:36,652 NERVE CELL, WHAT KIND OF CELL? 2920 01:54:36,652 --> 01:54:39,822 SO THERE'S A LOT OF SCIENCE THAT 2921 01:54:39,822 --> 01:54:41,958 HAS TO GO INTO DEVELOPING. 2922 01:54:41,958 --> 01:54:45,194 BUT, AGAIN, IF I GO TO THE 2923 01:54:45,194 --> 01:54:49,332 CYSTIC FIBROSIS MODEL, THE KEY 2924 01:54:49,332 --> 01:54:54,036 WAS DEVELOPMENT OF THE ASSAY 2925 01:54:54,036 --> 01:54:57,306 CELLS, WHERE IF THE MUTANT 2926 01:54:57,306 --> 01:55:00,509 CYSTIC FIBROSIS PROTEIN WAS 2927 01:55:00,509 --> 01:55:01,344 FUNCTIONAL, THE CELL WOULD 2928 01:55:01,344 --> 01:55:05,348 CHANGE COLOR. 2929 01:55:05,348 --> 01:55:08,784 AND THAT REQUIRED SOME VERY 2930 01:55:08,784 --> 01:55:11,787 CLEVER ENGINEERING WHICH WAS 2931 01:55:11,787 --> 01:55:13,689 DONE AT AURORA BIOSCIENCES WHICH 2932 01:55:13,689 --> 01:55:19,328 IS WHY VERTEX BOUGHT THE 2933 01:55:19,328 --> 01:55:22,632 COMPANY. 2934 01:55:22,632 --> 01:55:24,700 OKAY. 2935 01:55:24,700 --> 01:55:26,369 KEEP GOING. 2936 01:55:26,369 --> 01:55:27,136 >> WE'RE WORKING WITH NATIONAL 2937 01:55:27,136 --> 01:55:30,072 SCIENCE FOUNDATION ON 2938 01:55:30,072 --> 01:55:30,573 ESTABLISHING A REGIONAL 2939 01:55:30,573 --> 01:55:31,841 INNOVATION, ST. LOUIS, FOCUSED 2940 01:55:31,841 --> 01:55:32,875 ON NEUROTECH. 2941 01:55:32,875 --> 01:55:34,377 WITH OUR VENTURE DEVELOPMENT 2942 01:55:34,377 --> 01:55:38,881 ORGANIZATION WE SEE 50% OF OUR 2943 01:55:38,881 --> 01:55:39,482 BIOPHARMA PORTFOLIO FROM WashU 2944 01:55:39,482 --> 01:55:40,116 SCHOOL OF MEDICINE. 2945 01:55:40,116 --> 01:55:43,819 I WONDER IN TERMS OF BEST 2946 01:55:43,819 --> 01:55:45,121 PRACTICES, TALKING ABOUT YOUNG 2947 01:55:45,121 --> 01:55:46,889 INVESTIGATORS, HOW TO ALIGN 2948 01:55:46,889 --> 01:55:49,225 INCENTIVES INSIDE ACADEMIC 2949 01:55:49,225 --> 01:55:49,792 RESEARCH INSTITUTIONS FOR 2950 01:55:49,792 --> 01:55:51,193 COMMERCIALIZATION, WE'RE STILL 2951 01:55:51,193 --> 01:55:54,664 DEALING WITH THE CULTURE EFFECT 2952 01:55:54,664 --> 01:55:55,931 OF PUBLICATIONS, GRANTS, AND AS 2953 01:55:55,931 --> 01:55:58,834 A METRIC FOR SUCCESS VERSUS 2954 01:55:58,834 --> 01:55:59,869 COMMERCIALIZATION, UNDERSTANDING 2955 01:55:59,869 --> 01:56:01,537 WE'RE IN A NEW UNIVERSE NOW BUT 2956 01:56:01,537 --> 01:56:03,239 ANY THOUGHTS ON HOW TO ALIGN 2957 01:56:03,239 --> 01:56:06,442 CULTURE CHANGE THAT'S NEEDED TO 2958 01:56:06,442 --> 01:56:06,842 COMMERCIALIZATION? 2959 01:56:06,842 --> 01:56:12,548 >> YEAH, LET ME SPEAK TO THAT. 2960 01:56:12,548 --> 01:56:16,919 THIS IS WHAT I DO A LOT 2961 01:56:16,919 --> 01:56:19,655 LECTURING ON THIS THROUGHOUT THE 2962 01:56:19,655 --> 01:56:19,855 WORLD. 2963 01:56:19,855 --> 01:56:24,727 IT'S MOTIVATING AND EDUCATING 2964 01:56:24,727 --> 01:56:24,960 FACULTY. 2965 01:56:24,960 --> 01:56:34,103 WHEN I JOINED THE BOARD AT 2966 01:56:34,103 --> 01:56:35,771 CHILDREN'S HOSPITAL IN BOSTON 2967 01:56:35,771 --> 01:56:39,008 YEARS AGO, WITH TECHNOLOGY 2968 01:56:39,008 --> 01:56:42,678 LICENSING OFFICE WE ORGANIZED A 2969 01:56:42,678 --> 01:56:45,848 MONTHLY LUNCH TALK TO THE 2970 01:56:45,848 --> 01:56:48,684 FACULTY AND SENIOR POSTDOCS AND 2971 01:56:48,684 --> 01:56:54,523 STAFF ON THE ELEMENTS OF THE 2972 01:56:54,523 --> 01:56:54,824 BIOBUSINESS. 2973 01:56:54,824 --> 01:56:57,059 WHEN I MEET WITH GROUPS OF 2974 01:56:57,059 --> 01:56:58,094 FACULTY, I OFTEN ASK THEM HOW 2975 01:56:58,094 --> 01:57:01,964 MANY OF YOU CAN TELL ME ABOUT A 2976 01:57:01,964 --> 01:57:02,665 PATENT? 2977 01:57:02,665 --> 01:57:07,303 THE ANSWER IS ABOUT 5%. 2978 01:57:07,303 --> 01:57:09,371 SO, EDUCATING THE FACULTY, I 2979 01:57:09,371 --> 01:57:11,073 WOULD ARGUE, IS A VERY IMPORTANT 2980 01:57:11,073 --> 01:57:14,477 WAY OF DOING IT AND FOR THAT 2981 01:57:14,477 --> 01:57:17,980 MATTER LOOKING AT YOU, DOING IT 2982 01:57:17,980 --> 01:57:22,685 AT NIH, I THINK WOULD GO A LONG 2983 01:57:22,685 --> 01:57:27,823 WAY TO AT LEAST ENABLING THE 2984 01:57:27,823 --> 01:57:31,227 FACULTY TO REALIZE HOW THEY CAN 2985 01:57:31,227 --> 01:57:33,796 BEST IMPACT COMPANIES. 2986 01:57:33,796 --> 01:57:36,565 AND IT'S NOT ALWAYS BY TAKING 2987 01:57:36,565 --> 01:57:40,436 RESEARCH FROM THEIR LABS INTO 2988 01:57:40,436 --> 01:57:41,570 COMPANIES, BUT MUCH MORE OFTEN, 2989 01:57:41,570 --> 01:57:43,906 WHAT I DO, AND MY COLLEAGUES DO, 2990 01:57:43,906 --> 01:57:47,343 WE SERVE AS ADVISORS TO THE 2991 01:57:47,343 --> 01:57:47,610 COMPANIES. 2992 01:57:47,610 --> 01:57:50,546 WE HAVE SHARES IN THE COMPANY. 2993 01:57:50,546 --> 01:57:57,653 WE CAN TELL THEM OF NEW 2994 01:57:57,653 --> 01:57:58,053 DEVELOPMENT. 2995 01:57:58,053 --> 01:58:00,990 COMPANIES ARE FOCUS IT'S ON A 2996 01:58:00,990 --> 01:58:02,424 PARTICULAR AVENUE, AS ACADEMICS 2997 01:58:02,424 --> 01:58:07,463 WE CAN TELL THEM, HEY, HERE IS A 2998 01:58:07,463 --> 01:58:11,100 PAPER YOU SHOULD READ THEY WOULD 2999 01:58:11,100 --> 01:58:12,101 NEVER NOTICE. 3000 01:58:12,101 --> 01:58:14,436 ALSO THE FACULTY WILL HAVE 3001 01:58:14,436 --> 01:58:16,672 CONTACT AT THE YOUNG PEOPLE WHO 3002 01:58:16,672 --> 01:58:24,446 WORK IN THE COMPANIES NEVER 3003 01:58:24,446 --> 01:58:24,847 WOULD HAVE. 3004 01:58:24,847 --> 01:58:25,881 ACKNOWLEDGING START-UP, YOU CAN 3005 01:58:25,881 --> 01:58:31,353 GO A LONG WAY TO TAKING THESE 3006 01:58:31,353 --> 01:58:35,257 DEVELOPMENTS INTO COMMERCIAL 3007 01:58:35,257 --> 01:58:35,524 PRACTICE. 3008 01:58:35,524 --> 01:58:37,827 THE INVESTORS WANT TO HEAR THIS. 3009 01:58:37,827 --> 01:58:39,895 >> THE BIGGEST CHALLENGE BIOTECH 3010 01:58:39,895 --> 01:58:42,531 COMPANIES HAVE, TALKING WITH 3011 01:58:42,531 --> 01:58:44,333 ACADEMICIANS IS YOU REMEMBER THE 3012 01:58:44,333 --> 01:58:47,069 CURRENCY IN ACADEMIA IS 3013 01:58:47,069 --> 01:58:47,369 PUBLICATION. 3014 01:58:47,369 --> 01:58:49,538 AND MANY, MANY, MANY TIMES 3015 01:58:49,538 --> 01:58:51,240 THERE'S A GREAT APPROACH AND WE 3016 01:58:51,240 --> 01:58:54,777 REALIZE WE HAVE NO PATENT 3017 01:58:54,777 --> 01:58:55,678 PROTECTION, NO INTELLECTUAL 3018 01:58:55,678 --> 01:58:56,879 PROPERTY BECAUSE THEY PUBLISHED 3019 01:58:56,879 --> 01:58:57,880 ON IT, IT'S OUT THERE. 3020 01:58:57,880 --> 01:59:01,150 A COMPANY IS NOT GOING TO TAKE 3021 01:59:01,150 --> 01:59:02,251 THAT IF YOU CAN'T CONTROL THE 3022 01:59:02,251 --> 01:59:03,152 PATENT ON THAT. 3023 01:59:03,152 --> 01:59:04,320 THAT'S A BIG DEAL. 3024 01:59:04,320 --> 01:59:08,557 IF YOU HAVE SOMETHING YOU THINKS 3025 01:59:08,557 --> 01:59:10,025 IS COMMERCIAL, I LEARNED AT MASS 3026 01:59:10,025 --> 01:59:11,126 GENERAL, BEFORE WE COULD PUBLISH 3027 01:59:11,126 --> 01:59:13,662 ANYTHING WE HAD TO TAKE IT TO 3028 01:59:13,662 --> 01:59:16,799 THE PATENT LAWYERS, THEY WOULD 3029 01:59:16,799 --> 01:59:20,836 PATENT BEFORE WE COULD PUBLISH. 3030 01:59:20,836 --> 01:59:23,505 >> THE TIME IS RIGHT FOR MAKING 3031 01:59:23,505 --> 01:59:26,008 THESE APPROACHES, WE'RE LOOKING 3032 01:59:26,008 --> 01:59:27,576 TO DIVERSIFYING FUNDING SOURCES. 3033 01:59:27,576 --> 01:59:29,311 MAJOR UNIVERSITIES GET THAT. 3034 01:59:29,311 --> 01:59:32,715 MANY HAVE THESE VENTURE 3035 01:59:32,715 --> 01:59:34,416 ORGANIZATIONS, OFTEN THAT ARE 3036 01:59:34,416 --> 01:59:35,351 JOINT FACULTY AT OUR 3037 01:59:35,351 --> 01:59:37,419 INSTITUTIONS, AND I'LL SAY EVEN 3038 01:59:37,419 --> 01:59:39,922 NOW THINGS HAVE CHANGED WHERE WE 3039 01:59:39,922 --> 01:59:46,262 GET SORT OF ACADEMIC POINTS FOR 3040 01:59:46,262 --> 01:59:50,866 THINGS LIKE PATENTS, AND SO THE 3041 01:59:50,866 --> 01:59:52,434 FRAMEWORK IS CHANGING. 3042 01:59:52,434 --> 01:59:57,673 >> I THINK YOUR QUESTION IS 3043 01:59:57,673 --> 02:00:00,109 INTERWOVEN WITH THE QUESTION 3044 02:00:00,109 --> 02:00:02,878 ABOUT YOUNG FACULTY. 3045 02:00:02,878 --> 02:00:04,880 WHEN I SERVED ON THE TENURE 3046 02:00:04,880 --> 02:00:12,588 COMMITTEE YEARS AGO WE HAD 3047 02:00:12,588 --> 02:00:13,355 PUBLICATIONS, PEOPLE WERE 3048 02:00:13,355 --> 02:00:15,991 FINDING OUT THE TIME TO SPEND IN 3049 02:00:15,991 --> 02:00:17,259 DEVELOPING NEW TECHNOLOGY, NEW 3050 02:00:17,259 --> 02:00:19,728 DRUGS AND SO FORTH, DIDN'T COUNT 3051 02:00:19,728 --> 02:00:22,998 BECAUSE IT'S BEEN A LOT OF 3052 02:00:22,998 --> 02:00:24,500 YEARS, LESS PUBLICATIONS, BUT 3053 02:00:24,500 --> 02:00:24,833 MORE PATENTS. 3054 02:00:24,833 --> 02:00:27,236 WE HAD TO MEET WITH THE DEAN OF 3055 02:00:27,236 --> 02:00:31,707 THE COLLEGE OF MEDICINE, WELL, 3056 02:00:31,707 --> 02:00:34,410 WE NEED TO REVISE THIS, THE 3057 02:00:34,410 --> 02:00:35,144 CRITERIA. 3058 02:00:35,144 --> 02:00:37,046 AND SO FOR INSTITUTIONS THAT 3059 02:00:37,046 --> 02:00:39,848 DON'T HAVE IT, WHAT WE'RE GOING 3060 02:00:39,848 --> 02:00:42,484 TO BE SEEING IS A LOT OF JUNIOR 3061 02:00:42,484 --> 02:00:42,851 FACULTY LEAVING. 3062 02:00:42,851 --> 02:00:49,158 WHAT WE ENDED UP HAVING IS A 3063 02:00:49,158 --> 02:00:52,261 CONSIDERATION OF NEW DEVELOPMENT 3064 02:00:52,261 --> 02:00:54,029 PATENTS AS SOME CONDITIONS, 3065 02:00:54,029 --> 02:00:55,631 CRITERIA FOR PROMOTING STAFF, 3066 02:00:55,631 --> 02:00:57,399 RATHER THAN JUST PUBLICATIONS. 3067 02:00:57,399 --> 02:01:00,769 WE WERE ALSO CONSIDERING 3068 02:01:00,769 --> 02:01:02,738 PUBLICATIONS FOR THE NEW -- FOR 3069 02:01:02,738 --> 02:01:05,140 DISCLOSURES AS WELL. 3070 02:01:05,140 --> 02:01:08,610 SO IF INSTITUTIONS ARE ABLE TO 3071 02:01:08,610 --> 02:01:12,781 INCORPORATE THAT, INTO THE 3072 02:01:12,781 --> 02:01:14,116 PROMOTION AND TENURE PROCESS, IT 3073 02:01:14,116 --> 02:01:16,919 WILL KEEP MULTIPLE ENGAGED. 3074 02:01:16,919 --> 02:01:23,092 >> THANK YOU. 3075 02:01:23,092 --> 02:01:24,259 >> TWO MORE QUESTIONS, I'VE BEEN 3076 02:01:24,259 --> 02:01:27,696 TOLD WE'RE RUNNING OVER TIME. 3077 02:01:27,696 --> 02:01:28,464 >> THANK YOU. 3078 02:01:28,464 --> 02:01:31,633 CLAIRE RILEY, HERE IN PART AS 3079 02:01:31,633 --> 02:01:32,267 NEUROLOGIST, NEUROIMMUNOLOGIST, 3080 02:01:32,267 --> 02:01:33,135 DIRECTOR OF THE MULTIPLE 3081 02:01:33,135 --> 02:01:34,403 SCLEROSIS CENTER AT COLUMBIA. 3082 02:01:34,403 --> 02:01:36,472 ALSO SIT ON THE SCIENCE 3083 02:01:36,472 --> 02:01:37,373 COMMITTEE OF THE AMERICAN 3084 02:01:37,373 --> 02:01:39,508 ACADEMY OF NEUROLOGY. 3085 02:01:39,508 --> 02:01:45,147 I WANTED TO FOCUS ON DR. KHATRI, 3086 02:01:45,147 --> 02:01:47,449 ON YOUR COMMENTS ABOUT 3087 02:01:47,449 --> 02:01:49,718 LEVERAGING MULTI-ARMED TRIALS 3088 02:01:49,718 --> 02:01:53,455 AND IMPORTANCE OF THIS 3089 02:01:53,455 --> 02:01:56,458 INNOVATION, IN MULTIPLE 3090 02:01:56,458 --> 02:01:57,459 SCLEROSIS WE'VE HAD INNOVATION 3091 02:01:57,459 --> 02:02:00,429 IN THE LAST 30 YEARS, SEEING 3092 02:02:00,429 --> 02:02:00,796 MANY SUCCESSES. 3093 02:02:00,796 --> 02:02:03,465 I THINK ONE OF THE THINGS THAT 3094 02:02:03,465 --> 02:02:08,570 IS STIFLING THE NEXT STEPS FOR 3095 02:02:08,570 --> 02:02:09,905 EXAMPLE IN PROGRESSIVE M.S. IS 3096 02:02:09,905 --> 02:02:13,709 LACK OF ABILITY TO CORRAL MANY 3097 02:02:13,709 --> 02:02:14,977 INDUSTRY PLAYERS INTO WORKING 3098 02:02:14,977 --> 02:02:15,344 TOGETHER. 3099 02:02:15,344 --> 02:02:18,047 SO THAT WE CAN MINIMIZE AND THIS 3100 02:02:18,047 --> 02:02:20,115 REALLY SPEAKS TO OUR PATIENT 3101 02:02:20,115 --> 02:02:22,718 ADVOCACY GROUPS IN THE ROOM, AND 3102 02:02:22,718 --> 02:02:24,787 THANK YOU FOR THE PREMIUM WORK 3103 02:02:24,787 --> 02:02:27,623 YOU DO BUT TO MINIMIZE THE 3104 02:02:27,623 --> 02:02:31,960 IMPACT OF THE PLACEBO ARM OF THE 3105 02:02:31,960 --> 02:02:33,829 COMPARATOR ARM IN OUR CLINICAL 3106 02:02:33,829 --> 02:02:35,397 TRIALS REALLY SO THAT CARE CAN 3107 02:02:35,397 --> 02:02:37,466 BE ADVANCED FOR OUR PATIENTS AS 3108 02:02:37,466 --> 02:02:41,036 RAPIDLY AS POSSIBLE WITH AS FEW 3109 02:02:41,036 --> 02:02:43,038 PEOPLE EXPOSED TO PLACEBO, FOR 3110 02:02:43,038 --> 02:02:44,206 EXAMPLE, IN PROGRESSIVE M.S. 3111 02:02:44,206 --> 02:02:47,876 YOU YEARN FOR A WAY TO DO THIS 3112 02:02:47,876 --> 02:02:52,181 IN PHASE 3, PARTICULARLY AS I 3113 02:02:52,181 --> 02:02:53,115 SEE COMPANY AFTER COMPANY, YOU 3114 02:02:53,115 --> 02:02:54,983 KNOW, POURING MILLIONS OF 3115 02:02:54,983 --> 02:02:57,019 DOLLARS INTO THESE LARGE TRIALS 3116 02:02:57,019 --> 02:02:59,721 WITH YET ANOTHER PLACEBO ARM 3117 02:02:59,721 --> 02:03:02,958 WITH ALMOST THE EXACT SAME 3118 02:03:02,958 --> 02:03:04,426 INCLUSION AND EXCLUSION CRITERIA 3119 02:03:04,426 --> 02:03:06,028 BECAUSE TRIALS ARE SO SIMILAR. 3120 02:03:06,028 --> 02:03:10,466 HOW CAN WE MAKE THIS BETTER 3121 02:03:10,466 --> 02:03:12,000 TOGETHER AND AMONG OTHER THINGS 3122 02:03:12,000 --> 02:03:16,905 I THINK ABOUT OUR MECHANISMS FOR 3123 02:03:16,905 --> 02:03:17,606 IMPROVING CLINICAL TRIALS 3124 02:03:17,606 --> 02:03:20,242 DESIGN, FOR EXAMPLE PART OF OUR 3125 02:03:20,242 --> 02:03:22,044 CTSA AT COLUMBIA, I HOPE WE CAN 3126 02:03:22,044 --> 02:03:23,345 FIND WAYS TO DO THIS. 3127 02:03:23,345 --> 02:03:28,383 WOULD LOVE TO HEAR YOUR 3128 02:03:28,383 --> 02:03:28,650 THOUGHTS. 3129 02:03:28,650 --> 02:03:30,219 >> IT'S A REALLY IMPORTANT 3130 02:03:30,219 --> 02:03:32,087 QUESTION IN TERMS OF DOING THESE 3131 02:03:32,087 --> 02:03:33,255 OVER AND OVER, ONE AND DONE 3132 02:03:33,255 --> 02:03:35,624 TRIALS LIKE YOU SAID WITH 3133 02:03:35,624 --> 02:03:38,594 ONE-TO-ONE PLACEBOS, 50% NOT 3134 02:03:38,594 --> 02:03:39,495 GETTING AN ACTIVE THERAPY. 3135 02:03:39,495 --> 02:03:41,230 THERE ARE A TON OF OPPORTUNITIES 3136 02:03:41,230 --> 02:03:42,731 TO MAKE THINGS MORE EFFICIENT. 3137 02:03:42,731 --> 02:03:44,399 I'LL GIVE TWO EXAMPLES. 3138 02:03:44,399 --> 02:03:46,368 ONE IS OBVIOUSLY HAVING SOME 3139 02:03:46,368 --> 02:03:47,102 SORT OF CONSORTIUM, BRINGING 3140 02:03:47,102 --> 02:03:48,604 PEOPLE TOGETHER THE WAY YOU'RE 3141 02:03:48,604 --> 02:03:50,405 TRYING TO DO WITH THESE 3142 02:03:50,405 --> 02:03:50,739 COMPANIES. 3143 02:03:50,739 --> 02:03:52,841 IDEALLY WHAT YOU WOULD HAVE IS A 3144 02:03:52,841 --> 02:03:54,543 SITUATION WHERE THE COMPANY CAN 3145 02:03:54,543 --> 02:03:56,545 THEN BRING THEIR DRUG AND YOU 3146 02:03:56,545 --> 02:03:58,780 COULD HAVE MULTIPLE ARMS WITH 3147 02:03:58,780 --> 02:04:01,216 EACH DRUG AND ONE PLACEBO. 3148 02:04:01,216 --> 02:04:05,654 SOMETIMES THAT CAN SELL BECAUSE 3149 02:04:05,654 --> 02:04:06,788 IT'S RISK MITIGATION IN TERMS OF 3150 02:04:06,788 --> 02:04:07,789 INVESTMENT BUT SOMETIMES IT'S 3151 02:04:07,789 --> 02:04:09,725 NOT GOING TO WORK BECAUSE THEY 3152 02:04:09,725 --> 02:04:12,261 DON'T WANT TO COMPETE AND I'VE 3153 02:04:12,261 --> 02:04:15,664 BEEN IN THAT SCENARIO. 3154 02:04:15,664 --> 02:04:16,732 WHAT HELPED IN StrokeNet IS 3155 02:04:16,732 --> 02:04:18,734 POWER IN SCALE. 3156 02:04:18,734 --> 02:04:22,371 YOU WON'T GET TRIALS DONE 3157 02:04:22,371 --> 02:04:23,639 EFFICIENTLY IF YOU DON'T JOIN 3158 02:04:23,639 --> 02:04:25,908 OUR BANDWAGON. 3159 02:04:25,908 --> 02:04:27,910 THAT'S ONE POSITIVE ASPECT. 3160 02:04:27,910 --> 02:04:30,879 I WILL SAY THE SECOND THING AS 3161 02:04:30,879 --> 02:04:32,114 YOU'RE THINKING ABOUT TRIAL 3162 02:04:32,114 --> 02:04:34,550 EFFICIENCY IS MORE AND MORE 3163 02:04:34,550 --> 02:04:35,817 WE'RE DOING ADAPTIVE DESIGNS, 3164 02:04:35,817 --> 02:04:37,352 IT'S ALMOST HARD TO IMAGINE A 3165 02:04:37,352 --> 02:04:39,621 SITUATION WHERE YOU SHOULDN'T DO 3166 02:04:39,621 --> 02:04:41,089 AN ADAPTIVE DESIGN IN A PHASE 3 3167 02:04:41,089 --> 02:04:41,423 TRIAL. 3168 02:04:41,423 --> 02:04:42,724 IN OTHER WORDS LET'S SAY YOU 3169 02:04:42,724 --> 02:04:45,661 HAVE THIS NEW DRUG FOR 3170 02:04:45,661 --> 02:04:48,163 PROGRESSIVE M.S. AND SAY I'M 3171 02:04:48,163 --> 02:04:49,898 GOING TO RANDOMIZE EVERYBODY 3172 02:04:49,898 --> 02:04:51,867 WITH X, Y, AND Z. 3173 02:04:51,867 --> 02:04:54,436 IT MIGHT BE WORKING IN A SUBSET, 3174 02:04:54,436 --> 02:04:56,371 IF YOU CAN PRE-SPECIFY AND 3175 02:04:56,371 --> 02:04:58,006 ENRICH YOUR POPULATION AS YOU'RE 3176 02:04:58,006 --> 02:04:59,441 GOING ALONG YOU'LL INCREASE 3177 02:04:59,441 --> 02:05:01,009 CHANCES OF THAT TRIAL BEING 3178 02:05:01,009 --> 02:05:01,343 SUCCESSFUL. 3179 02:05:01,343 --> 02:05:04,246 THE KEY YOU HAVE TO PRE-SPECIFY 3180 02:05:04,246 --> 02:05:06,782 SO YOU DON'T KIND OF CHEAT IN 3181 02:05:06,782 --> 02:05:09,952 TERMS OF STATISTICAL PENALTIES. 3182 02:05:09,952 --> 02:05:11,553 OPPORTUNITIES LIKE THAT. 3183 02:05:11,553 --> 02:05:13,188 DEPENDING ON THE M.S. SOCIETIES, 3184 02:05:13,188 --> 02:05:17,159 WHETHER IT'S STRENGTH IN 3185 02:05:17,159 --> 02:05:18,594 BRINGING M.S. INVESTIGATORS 3186 02:05:18,594 --> 02:05:19,728 TOGETHER, WHETHER COMPASSIONATE 3187 02:05:19,728 --> 02:05:20,562 COLLEAGUES CHAMPIONING IN THE 3188 02:05:20,562 --> 02:05:21,763 COMPANIES TRYING TO GET PEOPLE 3189 02:05:21,763 --> 02:05:22,497 TO WORK TOGETHER. 3190 02:05:22,497 --> 02:05:25,033 I THINK THAT'S THE KEY TO 3191 02:05:25,033 --> 02:05:27,970 EVERYTHING WE DO. 3192 02:05:27,970 --> 02:05:30,005 I THINK ERIKA AUGUSTINE SAID 3193 02:05:30,005 --> 02:05:31,073 YESTERDAY ONE IMPORTANT THING 3194 02:05:31,073 --> 02:05:33,342 NINDS HAS DONE IS NOT JUST GIVE 3195 02:05:33,342 --> 02:05:35,877 US MONEY BUT BE CONVENERS TO 3196 02:05:35,877 --> 02:05:36,778 PULL US TOGETHER. 3197 02:05:36,778 --> 02:05:40,015 THAT RINGS TRUE TO ME. 3198 02:05:40,015 --> 02:05:44,886 >> MY NAME IS MARIA, A PATIENT 3199 02:05:44,886 --> 02:05:46,888 ADVOCATE IN THE LEUKODYSTROPHY 3200 02:05:46,888 --> 02:05:47,089 SPACE. 3201 02:05:47,089 --> 02:05:48,890 AMAZING PANEL. 3202 02:05:48,890 --> 02:05:49,725 I'M LUCKY, BASED IN 3203 02:05:49,725 --> 02:05:53,462 PHILADELPHIA, WORK A LOT WITH 3204 02:05:53,462 --> 02:06:00,335 THE GLIA RDRRN. 3205 02:06:00,335 --> 02:06:01,937 OUR YOUNG INVESTIGATORS ARE 3206 02:06:01,937 --> 02:06:02,204 SAVVY. 3207 02:06:02,204 --> 02:06:09,244 MY QUESTION AS WE TALK ABOUT K J 3208 02:06:09,244 --> 02:06:12,481 MULDOON, SHOUT OUT TO REBECCA, A 3209 02:06:12,481 --> 02:06:14,683 COLLABORATOR AND TREATED KJ, 3210 02:06:14,683 --> 02:06:16,618 WHAT I'M HEARING FROM YOUNG 3211 02:06:16,618 --> 02:06:17,719 INVESTIGATORS THEY WOULD LIKE A 3212 02:06:17,719 --> 02:06:24,860 MODEL MAYBE LED BY THE NIH WHERE 3213 02:06:24,860 --> 02:06:26,561 MEDICAL RESEARCH TEAMS ARE 3214 02:06:26,561 --> 02:06:28,597 REIMBURSED THROUGH PAYORS FOR 3215 02:06:28,597 --> 02:06:30,866 ONE AND DONE BUT DON'T HAVE 3216 02:06:30,866 --> 02:06:31,700 COMMERCIAL VIABILITY RIGHT NOW 3217 02:06:31,700 --> 02:06:37,372 BUT COULD ADVANCE THE SCIENCE ON 3218 02:06:37,372 --> 02:06:40,976 ONE AND DONE CASES AS INDUSTRY 3219 02:06:40,976 --> 02:06:42,144 SCALES UP AND MONETIZES, I WANT 3220 02:06:42,144 --> 02:06:45,614 TO ASK WHAT YOU THOUGHT OF THAT 3221 02:06:45,614 --> 02:06:49,818 IDEA. 3222 02:06:49,818 --> 02:06:52,587 >> EVERYONE IS LOOKING AT ME. 3223 02:06:52,587 --> 02:06:56,458 >> YES, I AM LOOKING AT YOU, 3224 02:06:56,458 --> 02:06:57,392 PROFESSOR LODISH. 3225 02:06:57,392 --> 02:06:59,928 YOU BROUGHT THIS UP. 3226 02:06:59,928 --> 02:07:06,802 >> I DON'T HAVE A CLEVER ANSWER. 3227 02:07:06,802 --> 02:07:10,806 >> I THINK AN INTERESTING 3228 02:07:10,806 --> 02:07:13,041 EXAMPLE YOU MENTIONED, HARVEY, 3229 02:07:13,041 --> 02:07:15,143 TRYING TO GO AFTER VERY RARE 3230 02:07:15,143 --> 02:07:15,711 INDICATIONS. 3231 02:07:15,711 --> 02:07:17,979 ONE OF THE THINGS THEY ARE DOING 3232 02:07:17,979 --> 02:07:21,683 IS THEY WILL GO AFTER A RARE 3233 02:07:21,683 --> 02:07:23,652 INDICATION ANDS DO A 3234 02:07:23,652 --> 02:07:25,354 PROOF-OF-CONCEPT IN A HUMAN TO 3235 02:07:25,354 --> 02:07:26,922 SHOW IT ACTUALLY WORKS. 3236 02:07:26,922 --> 02:07:30,325 SO WE'VE HAD THAT DISCUSSION 3237 02:07:30,325 --> 02:07:32,160 WITH HIM, OKAY, FOR A ROYALTY 3238 02:07:32,160 --> 02:07:33,295 PAYMENT THEN THE COMPANY CAN 3239 02:07:33,295 --> 02:07:35,163 TAKE THAT TO THE NEXT LEVEL AND 3240 02:07:35,163 --> 02:07:36,798 ACTUALLY DO IT FOR A LOT OF 3241 02:07:36,798 --> 02:07:37,599 DIFFERENT PEOPLE. 3242 02:07:37,599 --> 02:07:38,734 YOU'LL DO IT BECAUSE YOU'VE 3243 02:07:38,734 --> 02:07:41,837 SHOWN THAT IT WORKS IN HUMANS. 3244 02:07:41,837 --> 02:07:44,906 THAT'S THE BIG PROBLEM THAT ALL 3245 02:07:44,906 --> 02:07:46,375 COMPANIES HAVE, BIOTECH AND 3246 02:07:46,375 --> 02:07:50,912 PHARMACEUTICAL COMPANIES, HOW DO 3247 02:07:50,912 --> 02:07:51,813 REDUCE RISK? 3248 02:07:51,813 --> 02:07:53,782 HUNDREDS OF MILLIONS OF DOLLARS, 3249 02:07:53,782 --> 02:07:54,950 IT CAN FAIL. 3250 02:07:54,950 --> 02:07:56,752 AND, AGAIN, MOST OF THE PROGRAMS 3251 02:07:56,752 --> 02:07:58,153 THAT WE TAKE INTO THE CLINIC 3252 02:07:58,153 --> 02:07:58,954 WILL FAIL. 3253 02:07:58,954 --> 02:08:00,188 YOU HAVE TO LIVE WITH THAT. 3254 02:08:00,188 --> 02:08:01,556 IF YOU HAVE A PROGRAM YOU 3255 02:08:01,556 --> 02:08:03,492 ALREADY KNOW WORKS IN HUMANS, 3256 02:08:03,492 --> 02:08:05,460 THEN THE LIKELIHOOD OF SUCCESS 3257 02:08:05,460 --> 02:08:07,329 IS MUCH, MUCH, MUCH HIGHER. 3258 02:08:07,329 --> 02:08:12,234 THAT COULD BE A WAY OF SAYING 3259 02:08:12,234 --> 02:08:14,636 CAN WE, YOU KNOW, TREAT A COUPLE 3260 02:08:14,636 --> 02:08:16,304 PATIENTS, SHOW IT WORKS, MAYBE 3261 02:08:16,304 --> 02:08:19,474 USE THAT AS A FOUNDATION TO 3262 02:08:19,474 --> 02:08:21,777 EXPAND INTO MORE PATIENTS. 3263 02:08:21,777 --> 02:08:24,880 >> THANK YOU. 3264 02:08:24,880 --> 02:08:25,280 >> OKAY. 3265 02:08:25,280 --> 02:08:28,617 YOU GUYS ARE GREAT. 3266 02:08:28,617 --> 02:08:29,818 THAT'S ALL I CAN SAY. 3267 02:08:29,818 --> 02:08:33,388 THANK YOU VERY MUCH. 3268 02:08:33,388 --> 02:08:34,656 THANK YOU, WALTER, FOR GIVING US 3269 02:08:34,656 --> 02:08:37,692 THE PRIVILEGE BEING HERE AND 3270 02:08:37,692 --> 02:08:39,060 SPEAKING TO YOU. 3271 02:08:39,060 --> 02:08:47,936 AND I THINK IT'S TIME FOR LUNCH 3272 02:08:47,936 --> 02:08:51,006 >> THANK YOU, HARVEY. 3273 02:08:51,006 --> 02:08:56,545 THANK YOU, ED, CRAIG, POOJA, AND 3274 02:08:56,545 --> 02:08:58,146 EVARISTUS FOR A WONDERFUL 3275 02:08:58,146 --> 02:08:58,613 DISCUSSION. 3276 02:08:58,613 --> 02:08:59,815 I INVITE YOU TO PARTICIPATE IN 3277 02:08:59,815 --> 02:09:02,250 LUNCH BY THE AMERICAN BRAIN 3278 02:09:02,250 --> 02:09:03,618 COALITION IN 1175, RIGHT AROUND 3279 02:09:03,618 --> 02:09:07,255 THE CORNER. 3280 02:09:07,255 --> 02:09:08,757 CONTINUE THE GREAT DISCUSSIONS. 3281 02:09:08,757 --> 02:09:09,524 FIND THE SPEAKERS. 3282 02:09:09,524 --> 02:09:14,896 THEY ARE NOT GOING TO GET A 3283 02:09:14,896 --> 02:09:16,198 BREAK AT LUNCH. 3284 02:09:16,198 --> 02:09:17,666 SO MANY WONDERFUL THREADS 3285 02:09:17,666 --> 02:09:19,668 BROUGHT UP, I HOPE YOU'LL 3286 02:09:19,668 --> 02:09:20,001 CONTINUE. 3287 02:09:20,001 --> 02:09:22,637 FOR THOSE WHO ARE SIGNED UP FOR 3288 02:09:22,637 --> 02:09:24,873 ONE-ON-ONE DISCUSSIONS WITH SOME 3289 02:09:24,873 --> 02:09:26,441 OF OUR WONDERFUL PROGRAM STAFF, 3290 02:09:26,441 --> 02:09:31,012 YOU CAN COME TO DIANA OR TO NORA 3291 02:09:31,012 --> 02:09:32,581 AT REGISTRATION TO FIND OUT 3292 02:09:32,581 --> 02:09:35,050 WHICH ROOMS TO MEET AT FOR THE 3293 02:09:35,050 --> 02:09:36,218 BREAKOUT SESSIONS. 3294 02:09:36,218 --> 02:09:36,535 THANKS VERY MUCH. 3295 02:09:39,046 --> 02:09:39,513 >> GOOD AFTERNOON, FOLKS. 3296 02:09:39,513 --> 02:09:43,117 WELCOME BACK TO THE SECOND HALF 3297 02:09:43,117 --> 02:09:47,588 OF THE NON-PROFIT FORUM. 3298 02:09:47,588 --> 02:09:49,757 WE HAVE A GOOD PANEL COMING UP, 3299 02:09:49,757 --> 02:09:51,592 BUT A TOUGH ACT TO FOLLOW AFTER 3300 02:09:51,592 --> 02:09:53,861 WHAT WE SAW IN THE MORNING. 3301 02:09:53,861 --> 02:09:58,465 THEY ARE GOING TO BE UP TO IT, I 3302 02:09:58,465 --> 02:09:59,900 KNOW. 3303 02:09:59,900 --> 02:10:02,436 THIS PANEL WILL FOCUS ON 3304 02:10:02,436 --> 02:10:03,537 PUBLIC/PRIVATE PARTNERSHIPS AND 3305 02:10:03,537 --> 02:10:05,572 WE HAVE A NUMBER OF FOLKS WHO 3306 02:10:05,572 --> 02:10:07,675 HAVE LOTS OF EXPERIENCE IN 3307 02:10:07,675 --> 02:10:10,077 WORKING WITH DIFFERENT PARTS OF 3308 02:10:10,077 --> 02:10:13,414 OUR ECOSYSTEM HERE AT NINDS AND 3309 02:10:13,414 --> 02:10:14,348 NIH AT LARGE. 3310 02:10:14,348 --> 02:10:17,651 SO LET'S GET RIGHT INTO IT. 3311 02:10:17,651 --> 02:10:21,221 THE MODERATOR IS GOING TO BE 3312 02:10:21,221 --> 02:10:24,758 KRISTIN SCHNEEMAN, SENIOR 3313 02:10:24,758 --> 02:10:27,361 DIRECTOR AT FASTERCURES OF THE 3314 02:10:27,361 --> 02:10:27,861 MILKEN INSTITUTE. 3315 02:10:27,861 --> 02:10:29,063 OVER TO YOU. 3316 02:10:29,063 --> 02:10:32,032 >> I APPRECIATE THAT. 3317 02:10:32,032 --> 02:10:34,735 I'M A SENIOR DIRECTOR ON THE 3318 02:10:34,735 --> 02:10:35,703 FASTERCURES TEAM AT THE MILKEN 3319 02:10:35,703 --> 02:10:36,403 INSTITUTE. 3320 02:10:36,403 --> 02:10:37,171 SO EXCITED TO BE HERE. 3321 02:10:37,171 --> 02:10:39,106 SUCH A BIG FAN OF THE EVENT. 3322 02:10:39,106 --> 02:10:40,841 I HAVEN'T BEEN IN PERSON FOR A 3323 02:10:40,841 --> 02:10:43,043 NUMBER OF YEARS BUT TRY WATCH 3324 02:10:43,043 --> 02:10:46,146 VIRTUALLY AS MUCH AS I CAN EVERY 3325 02:10:46,146 --> 02:10:46,547 YEAR. 3326 02:10:46,547 --> 02:10:51,952 I WISH -- I'VE SECRETLY WISHED, 3327 02:10:51,952 --> 02:10:54,154 NOT NOT SO, THERE WERE MORE 3328 02:10:54,154 --> 02:10:55,589 EVENTS LIKE THIS, SO HONORED TO 3329 02:10:55,589 --> 02:10:58,092 BE ASKED TO PLAY A ROLE THIS 3330 02:10:58,092 --> 02:10:58,525 YEAR. 3331 02:10:58,525 --> 02:11:03,630 OUR TOPIC HERE IS OBVIOUSLY 3332 02:11:03,630 --> 02:11:05,632 AROUND -- AGENDA SAYS 3333 02:11:05,632 --> 02:11:06,600 PUBLIC/PRIVATE PARTNERSHIP. 3334 02:11:06,600 --> 02:11:09,770 WE'RE DEFINE THAT LOOSELY. 3335 02:11:09,770 --> 02:11:11,605 PUBLIC/PRIVATE PARTNERSHIP HAS A 3336 02:11:11,605 --> 02:11:12,239 TECHNICAL DEFINITION IN SOME 3337 02:11:12,239 --> 02:11:14,208 PARTS OF THE UNIVERSE BUT WE'RE 3338 02:11:14,208 --> 02:11:16,577 TALKING MORE LOOSELY ABOUT 3339 02:11:16,577 --> 02:11:17,378 PARTNERSHIPS THAT INVOLVE 3340 02:11:17,378 --> 02:11:18,379 PATIENT ORGANIZATIONS LIKE THE 3341 02:11:18,379 --> 02:11:21,281 ONES IN THIS ROOM AND PREVIOUSLY 3342 02:11:21,281 --> 02:11:23,684 PANEL SET US UP NICELY. 3343 02:11:23,684 --> 02:11:27,021 THANK YOU SO MUCH, DR. LODISH 3344 02:11:27,021 --> 02:11:30,624 AND PANEL, FOR HAVING TEED UP 3345 02:11:30,624 --> 02:11:32,426 CONVERSATION IN YOUR SESSION, 3346 02:11:32,426 --> 02:11:35,396 THE NEED FOR COLLABORATION AND 3347 02:11:35,396 --> 02:11:36,563 PARTICULARLY WITH PATIENT 3348 02:11:36,563 --> 02:11:37,064 COMMUNITIES. 3349 02:11:37,064 --> 02:11:43,270 I'LL JUST SAY A WORD ABOUT 3350 02:11:43,270 --> 02:11:44,071 FASTERCURES AND THE MILKEN 3351 02:11:44,071 --> 02:11:44,872 INSTITUTE. 3352 02:11:44,872 --> 02:11:48,809 IT'S A THINK TANK, NON-PROFIT, 3353 02:11:48,809 --> 02:11:49,410 NONPARTISAN, THAT COVERS A LOT 3354 02:11:49,410 --> 02:11:50,511 OF TERRITORY. 3355 02:11:50,511 --> 02:11:54,181 WE HAVE A HEALTH PILLAR, THAT 3356 02:11:54,181 --> 02:11:56,784 INCLUDES MY TEAM, FASTERCURES, 3357 02:11:56,784 --> 02:12:01,088 WHICH FOCUSES ON BIOMEDICAL 3358 02:12:01,088 --> 02:12:04,658 INNOVATION AND THE ECOSYSTEM, 3359 02:12:04,658 --> 02:12:06,827 HOW IT IS PERFORMING AND MAKING 3360 02:12:06,827 --> 02:12:09,229 IT GO FASTER TO SOLVE PROBLEMS 3361 02:12:09,229 --> 02:12:13,400 FOR EVERYBODY . 3362 02:12:13,400 --> 02:12:16,503 WE'VE HAD A LONG STANDING ROLE 3363 02:12:16,503 --> 02:12:18,005 WITH ORGANIZATIONS FROM OUR 3364 02:12:18,005 --> 02:12:19,306 BEGINNING, MORE THAN 20 YEARS 3365 02:12:19,306 --> 02:12:20,007 AGO. 3366 02:12:20,007 --> 02:12:21,875 AND I WON'T GO INTO REASONS FOR 3367 02:12:21,875 --> 02:12:22,342 THAT. 3368 02:12:22,342 --> 02:12:24,845 PEOPLE SOMETIMES WONDER WHY 3369 02:12:24,845 --> 02:12:27,581 BECAUSE PATIENT GROUPS HAVE LESS 3370 02:12:27,581 --> 02:12:29,349 RESOURCES, PERHAPS, THAN OTHER 3371 02:12:29,349 --> 02:12:31,485 PLAYERS ALWAYS, THAN OTHER 3372 02:12:31,485 --> 02:12:33,353 PLAYERS IN THE SYSTEM BUT WE'VE 3373 02:12:33,353 --> 02:12:35,155 ALWAYS THOUGHT THAT YOU ALL 3374 02:12:35,155 --> 02:12:37,424 BRING SOME VERY UNIQUE ASSETS 3375 02:12:37,424 --> 02:12:40,294 THAT OTHERS CANNOT REPLICATE IN 3376 02:12:40,294 --> 02:12:41,261 THIS SYSTEM, INCLUDING MONEY, 3377 02:12:41,261 --> 02:12:43,664 WHICH OBVIOUSLY OTHERS HAVE AS 3378 02:12:43,664 --> 02:12:46,533 WELL BUT PHILANTHROPY HAS UNIQUE 3379 02:12:46,533 --> 02:12:47,301 CHARACTERISTICS THAT CAN ALLOW 3380 02:12:47,301 --> 02:12:49,036 IT TO DO THINGS OTHER FORMS OF 3381 02:12:49,036 --> 02:12:50,771 CAPITAL CAN'T OR WON'T. 3382 02:12:50,771 --> 02:12:54,408 YOU HAVE ACCESS TO PATIENTS, TO 3383 02:12:54,408 --> 02:12:55,809 THEIR PARTICIPATION IN RESEARCH. 3384 02:12:55,809 --> 02:12:57,611 YOU CAN BE THE HONEST BROKERS 3385 02:12:57,611 --> 02:12:59,646 FOR THAT PARTICIPATION AND 3386 02:12:59,646 --> 02:13:01,915 RESEARCH, ALSO BRINGING INSIGHTS 3387 02:13:01,915 --> 02:13:03,350 INTO THE RESEARCH PROCESS. 3388 02:13:03,350 --> 02:13:06,286 AND THAT URGENCY WHICH WE'VE 3389 02:13:06,286 --> 02:13:09,423 HEARD ABOUT TODAY AND 3390 02:13:09,423 --> 02:13:10,491 REPRESENTATIVE WEXTON 3391 02:13:10,491 --> 02:13:13,694 EXEMPLIFIED VERY, VERY DIRECTLY 3392 02:13:13,694 --> 02:13:16,230 THE URGENCY, THE DRIVE, SOMEBODY 3393 02:13:16,230 --> 02:13:22,302 USED A TERM EARLIER, YOU'RE THE 3394 02:13:22,302 --> 02:13:23,303 TRUE DRIVERS OF PROGRESS. 3395 02:13:23,303 --> 02:13:28,175 THAT'S NOT JUST NICE TO HAVE. 3396 02:13:28,175 --> 02:13:29,243 IT'S A TANGIBLE ASSET GROUPS CAN 3397 02:13:29,243 --> 02:13:34,047 BRING TO THE PROCESS OF 3398 02:13:34,047 --> 02:13:35,682 DEVELOPING DRUGS. 3399 02:13:35,682 --> 02:13:38,385 WE'VE GOT AN AFFINITY NETWORK OF 3400 02:13:38,385 --> 02:13:40,020 PATIENT FOUNDATIONS WHERE WE 3401 02:13:40,020 --> 02:13:42,122 LIKE OTHERS IN THE ROOM TRY TO 3402 02:13:42,122 --> 02:13:43,590 BRING PEOPLE TOGETHER TO SHARE 3403 02:13:43,590 --> 02:13:46,126 WHAT THEY ARE DOING, BEST 3404 02:13:46,126 --> 02:13:47,227 PRACTICES, GOOD APPROACHES, NEW 3405 02:13:47,227 --> 02:13:48,562 BRICK WALLS YOU'RE RUNNING UP 3406 02:13:48,562 --> 02:13:49,563 AGAINST, HOW YOU'RE KNOCKING 3407 02:13:49,563 --> 02:13:51,965 THEM DOWN OR RUNNING AROUND THEM 3408 02:13:51,965 --> 02:13:54,601 OR VAULTING OVER THEM. 3409 02:13:54,601 --> 02:13:56,103 WE'VE DONE A LOT OF 3410 02:13:56,103 --> 02:13:57,771 COLLABORATION ACTUALLY FOUND A 3411 02:13:57,771 --> 02:14:00,974 PAPER WE WROTE, ALMOST 10 YEARS 3412 02:14:00,974 --> 02:14:07,047 AGO, OLDIE BUT A GOODY, 3413 02:14:07,047 --> 02:14:08,015 CORNERSTONES OF COLLABORATION, 3414 02:14:08,015 --> 02:14:10,984 FOUNDATIONS WERE SAYING WE GET 3415 02:14:10,984 --> 02:14:13,387 ASKED A LOT TO PARTICIPATE, NOW 3416 02:14:13,387 --> 02:14:15,956 WE'RE BEING ASKED TO CREATE THEM 3417 02:14:15,956 --> 02:14:19,459 AND DRIVE THEM MAYBE IN WAYS NOT 3418 02:14:19,459 --> 02:14:19,760 DONE BEFORE. 3419 02:14:19,760 --> 02:14:21,261 HOW ARE WE SUPPOSED TO THINK 3420 02:14:21,261 --> 02:14:22,396 ABOUT THAT? 3421 02:14:22,396 --> 02:14:24,498 THAT'S A LOT. 3422 02:14:24,498 --> 02:14:26,133 WE LOOKED AT ISSUES AROUND 3423 02:14:26,133 --> 02:14:26,967 COLLABORATION IN THAT REPORT. 3424 02:14:26,967 --> 02:14:33,006 NONE OF US CAN DO IT ALONE. 3425 02:14:33,006 --> 02:14:36,210 SCIENCE IS A TEAM SPORT, 3426 02:14:36,210 --> 02:14:37,344 STAKEHOLDERS ARE LOOK TO 3427 02:14:37,344 --> 02:14:40,347 FOUNDATIONS TO BE HONEST 3428 02:14:40,347 --> 02:14:41,248 BROKERS, TO LEAD COLLABORATIONS. 3429 02:14:41,248 --> 02:14:43,817 I HAVE AN AMAZING GROUP OF 3430 02:14:43,817 --> 02:14:46,620 SPEAKERS WITH A LOT OF 3431 02:14:46,620 --> 02:14:49,223 EXPERIENCE, LEADING AND ADVISING 3432 02:14:49,223 --> 02:14:50,757 AND CRAFTING AND SUPPORTING 3433 02:14:50,757 --> 02:14:51,825 PARTNERSHIPS OF MANY TYPES. 3434 02:14:51,825 --> 02:14:53,694 I'M GOING TO ASK EACH TO 3435 02:14:53,694 --> 02:14:54,828 INTRODUCE THEMSELVES AND SAY A 3436 02:14:54,828 --> 02:14:56,463 FEW OPENING WORDS IN A MINUTE. 3437 02:14:56,463 --> 02:14:58,065 WE'RE GOING TO TALK ABOUT A 3438 02:14:58,065 --> 02:14:59,666 NUMBER OF KEY QUESTIONS LIKE 3439 02:14:59,666 --> 02:15:01,602 WHEN IS COLLABORATION THE RIGHT 3440 02:15:01,602 --> 02:15:02,069 SOLUTION? 3441 02:15:02,069 --> 02:15:03,036 WHEN IS PARTNERSHIP THE RIGHT 3442 02:15:03,036 --> 02:15:03,370 SOLUTION? 3443 02:15:03,370 --> 02:15:05,038 WHAT FORMS MIGHT IT TAKE? 3444 02:15:05,038 --> 02:15:06,773 WE RECOGNIZE IT CAN BE HARDER 3445 02:15:06,773 --> 02:15:09,743 THAN DOING THINGS BY YOURSELF, 3446 02:15:09,743 --> 02:15:10,577 RIGHT? 3447 02:15:10,577 --> 02:15:12,679 HOW CAN FOUNDATIONS ENSURE THEIR 3448 02:15:12,679 --> 02:15:15,048 MISSION AND VALUES ARE PRESERVED 3449 02:15:15,048 --> 02:15:17,150 WHILE TAKING INTO ACCOUNT 3450 02:15:17,150 --> 02:15:19,486 PARTNERS' INTERESTS AND NEEDS? 3451 02:15:19,486 --> 02:15:21,521 WHAT ARE THE BIGGEST OBSTACLES 3452 02:15:21,521 --> 02:15:23,857 TO CREATING EFFICIENT AND 3453 02:15:23,857 --> 02:15:24,691 EFFECTIVE PARTNERSHIPS, EXAMPLES 3454 02:15:24,691 --> 02:15:26,526 OF WHEN IT'S WORKED WELL, WHAT 3455 02:15:26,526 --> 02:15:28,662 RESOURCES MIGHT BE NEEDED TO 3456 02:15:28,662 --> 02:15:30,597 ADDRESS KEY ISSUES OF THE THINGS 3457 02:15:30,597 --> 02:15:33,967 THAT KIND OF GREASE THE WHEELS 3458 02:15:33,967 --> 02:15:35,502 OF COLLABORATION, AGREEMENTS, 3459 02:15:35,502 --> 02:15:36,637 YOU KNOW, SOMETIMES IP, DATA 3460 02:15:36,637 --> 02:15:38,505 SHARING, ALL OF THOSE THINGS 3461 02:15:38,505 --> 02:15:40,574 THAT GO INTO WORKING WITH OTHER 3462 02:15:40,574 --> 02:15:41,742 STAKEHOLDERS IN THE SYSTEM. 3463 02:15:41,742 --> 02:15:43,477 WE'RE GOING TO LEAVE PLENTY OF 3464 02:15:43,477 --> 02:15:45,646 TIME FOR QUESTIONS. 3465 02:15:45,646 --> 02:15:47,581 IN THE QUESTIONS, I WANT TO 3466 02:15:47,581 --> 02:15:49,416 INVITE PEOPLE TO SHARE YOUR OWN 3467 02:15:49,416 --> 02:15:49,716 EXPERIENCES. 3468 02:15:49,716 --> 02:15:55,122 I KNOW SOME OF YOU IN THIS ROOM 3469 02:15:55,122 --> 02:15:57,391 I KNOW YOU RUN YOUR OWN SPACES. 3470 02:15:57,391 --> 02:15:59,092 IF YOU DON'T COME TO THE MIC I'M 3471 02:15:59,092 --> 02:16:02,029 GOING TO CALL ON YOU. 3472 02:16:02,029 --> 02:16:03,130 I'M GOING TO START, GO DOWN THE 3473 02:16:03,130 --> 02:16:05,299 ROW AND ASK THE SPEAKERS ON THE 3474 02:16:05,299 --> 02:16:06,867 PANEL TO INTRODUCE THEMSELVES 3475 02:16:06,867 --> 02:16:08,669 BRIEFLY, ONE SENTENCE ABOUT 3476 02:16:08,669 --> 02:16:09,836 YOURSELF, ONE ABOUT YOUR 3477 02:16:09,836 --> 02:16:10,604 ORGANIZATION. 3478 02:16:10,604 --> 02:16:13,073 WHO ARE YOU BRINGING INTO 3479 02:16:13,073 --> 02:16:14,408 PARTNERSHIP WITH WHAT GENERAL 3480 02:16:14,408 --> 02:16:18,378 AIMS, AND MAYBE AN EXAMPLE OF A 3481 02:16:18,378 --> 02:16:19,479 CURRENT EFFORT YOU'RE INVOLVED 3482 02:16:19,479 --> 02:16:28,355 WITH IF IT'S RELEVANT. 3483 02:16:28,355 --> 02:16:29,323 >> RACHEL WURSMAN, 3484 02:16:29,323 --> 02:16:30,490 NEUROSCIENTIST, NEUROETHICIST BY 3485 02:16:30,490 --> 02:16:32,826 TRAINING, BACKGROUND IN 3486 02:16:32,826 --> 02:16:37,964 NEUROMODULATION RESEARCH, 3487 02:16:37,964 --> 02:16:39,499 CURRENTLY WITH AMERICAN BRAIN 3488 02:16:39,499 --> 02:16:41,668 COALITION WORKING ON BUILDING 3489 02:16:41,668 --> 02:16:43,770 AND LAUNCHING EXTERNAL 3490 02:16:43,770 --> 02:16:45,005 STAKEHOLDER ENGAGEMENT 3491 02:16:45,005 --> 02:16:45,672 INITIATIVE. 3492 02:16:45,672 --> 02:16:49,109 AND ABC IS AN UMBRELLA 3493 02:16:49,109 --> 02:16:50,510 ORGANIZATION OF ADVOCACY GROUPS 3494 02:16:50,510 --> 02:16:54,081 THAT -- I'M LOOKING AT MARK, 3495 02:16:54,081 --> 02:16:55,015 HOPEFULLY I GET THIS 3496 02:16:55,015 --> 02:16:56,249 APPROPRIATE, PART OF THE MISSION 3497 02:16:56,249 --> 02:17:01,288 IS TO SPEAK WITH ONE VOICE TO 3498 02:17:01,288 --> 02:17:03,390 ADVOCATE ACROSS ORGANIZATIONS 3499 02:17:03,390 --> 02:17:05,692 AND ACROSS CONDITIONS AND ISSUES 3500 02:17:05,692 --> 02:17:08,095 WITHIN THE BRAIN HEALTH FIELD SO 3501 02:17:08,095 --> 02:17:09,696 THEY HAVE MEMBERSHIP. 3502 02:17:09,696 --> 02:17:11,598 AND MULTIPLE SECTORS AND 3503 02:17:11,598 --> 02:17:12,899 HUNDREDS OF ORGANIZATIONS. 3504 02:17:12,899 --> 02:17:16,536 SO, THE INITIATIVE THAT I'VE 3505 02:17:16,536 --> 02:17:20,140 BEEN WORKING ON IS TO HELP BUILD 3506 02:17:20,140 --> 02:17:21,842 PROGRAMS THAT CAN PROVIDE 3507 02:17:21,842 --> 02:17:26,012 SUPPORT TO, ON ONE HAND, BUILD 3508 02:17:26,012 --> 02:17:26,913 CAPACITY WITHIN ADVOCACY 3509 02:17:26,913 --> 02:17:28,482 ORGANIZATIONS FOR CONNECTING 3510 02:17:28,482 --> 02:17:31,485 PEOPLE WITH LIVED EXPERIENCE 3511 02:17:31,485 --> 02:17:32,619 WITH INDUSTRY, AND ALSO 3512 02:17:32,619 --> 02:17:33,587 PREPARING AND SUPPORTING 3513 02:17:33,587 --> 02:17:35,622 INDUSTRY TO BE ABLE TO PARTNER 3514 02:17:35,622 --> 02:17:37,257 WITH PEOPLE WITH LIVED 3515 02:17:37,257 --> 02:17:39,226 EXPERIENCE EARLY IN TECHNOLOGY 3516 02:17:39,226 --> 02:17:40,827 DEVELOPMENT, PRODUCT 3517 02:17:40,827 --> 02:17:42,496 DEVELOPMENT, SO THAT THE 3518 02:17:42,496 --> 02:17:45,699 PRIORITIES AND THE NEEDS AND THE 3519 02:17:45,699 --> 02:17:46,967 CREATIVITY FRANKLY OF THE PEOPLE 3520 02:17:46,967 --> 02:17:49,436 WHO ARE IN THIS ROOM AND WHO ARE 3521 02:17:49,436 --> 02:17:51,405 MEMBERS OF YOUR ORGANIZATIONS 3522 02:17:51,405 --> 02:17:54,408 CAN BE DRIVING INNOVATION. 3523 02:17:54,408 --> 02:17:56,309 AND SO THE -- SHOULD I WAIT TO 3524 02:17:56,309 --> 02:17:58,378 TALK ABOUT MORE OF THAT? 3525 02:17:58,378 --> 02:18:03,150 >> NO, PLEASE. 3526 02:18:03,150 --> 02:18:03,617 >> OKAY. 3527 02:18:03,617 --> 02:18:07,187 SO, THERE ARE A LOT OF EXCELLENT 3528 02:18:07,187 --> 02:18:07,854 PATIENT ENGAGEMENT, COMMUNITY 3529 02:18:07,854 --> 02:18:11,291 ENGAGEMENT RESOURCES OUT THERE. 3530 02:18:11,291 --> 02:18:16,563 MANY OF THEM PRODUCED BY FEDERAL 3531 02:18:16,563 --> 02:18:19,232 ORGANIZATIONS, BY MILLIKEN, AND 3532 02:18:19,232 --> 02:18:20,500 WE STILL RESPECTIVELY, THESE 3533 02:18:20,500 --> 02:18:21,334 ORGANIZATIONS ASSISTING WITH 3534 02:18:21,334 --> 02:18:22,736 THIS, HAVE PEOPLE AND 3535 02:18:22,736 --> 02:18:24,304 ORGANIZATIONS THAT SAY I WANT TO 3536 02:18:24,304 --> 02:18:25,405 DO COMMUNITY ENGAGEMENT, AND 3537 02:18:25,405 --> 02:18:27,841 WHERE DO I START? 3538 02:18:27,841 --> 02:18:29,810 AND AS WE KNOW, THE MAIN 3539 02:18:29,810 --> 02:18:32,779 CONSTRAINTS, AND WE DID A 3540 02:18:32,779 --> 02:18:33,980 MEMBERSHIP SURVEY, WE WERE NOT 3541 02:18:33,980 --> 02:18:34,848 SURPRISED BY RESULTS. 3542 02:18:34,848 --> 02:18:37,317 PART OF ONE OF THE THINGS WE 3543 02:18:37,317 --> 02:18:42,656 DISCOVERED IS REALLY THE MAIN 3544 02:18:42,656 --> 02:18:44,191 CONSTRAINTS BY ADVOCACY 3545 02:18:44,191 --> 02:18:46,159 ORGANIZATIONS AND START-UP MED 3546 02:18:46,159 --> 02:18:48,762 TECH COMPANIES AS WELL ARE 3547 02:18:48,762 --> 02:18:54,100 CONSTRAINTS IN TIME DUE TO 3548 02:18:54,100 --> 02:18:55,335 COMPETING PRIORITIES, AND 3549 02:18:55,335 --> 02:18:56,503 PERSONNEL LIMITATIONS, RIGHT? 3550 02:18:56,503 --> 02:18:58,104 SO I'M SURE A LOT OF THE 3551 02:18:58,104 --> 02:18:59,272 ORGANIZATIONS IN THIS ROOM 3552 02:18:59,272 --> 02:19:02,876 PROBABLY GET A LOT OF ENGAGEMENT 3553 02:19:02,876 --> 02:19:05,278 REQUESTS, AND EVEN JUST HAVING 3554 02:19:05,278 --> 02:19:06,880 THE RESOURCES OR INFRASTRUCTURE 3555 02:19:06,880 --> 02:19:10,250 TO EVEN RESPOND OR TRIAGE THOSE 3556 02:19:10,250 --> 02:19:11,284 REQUESTS, BUILDING CAPACITY 3557 02:19:11,284 --> 02:19:13,553 REALLY IS A COMPLEX THING. 3558 02:19:13,553 --> 02:19:14,821 AND SO WHAT ARE THE ELEMENTS? 3559 02:19:14,821 --> 02:19:17,791 PART OF WHAT WE DID WITH NEEDS 3560 02:19:17,791 --> 02:19:20,293 ASSESSMENT IS INTERVIEWING AND 3561 02:19:20,293 --> 02:19:25,332 WORKING WITH DIFFERENT ADVOCACY 3562 02:19:25,332 --> 02:19:26,266 ORGANIZATIONS, AND DISCOVERING 3563 02:19:26,266 --> 02:19:28,268 WHAT ARE THE TYPES OF SUPPORT 3564 02:19:28,268 --> 02:19:30,070 THAT WOULD BE ABLE THAT WE COULD 3565 02:19:30,070 --> 02:19:32,272 DELIVER IN A WAY THAT IS 3566 02:19:32,272 --> 02:19:35,208 EFFICIENT AND MINDFUL OF THOSE 3567 02:19:35,208 --> 02:19:35,842 CONSTRAINTS. 3568 02:19:35,842 --> 02:19:38,345 AND SO WE DISCOVERED A LOT OF 3569 02:19:38,345 --> 02:19:39,746 VERY INTERESTING THINGS, PART OF 3570 02:19:39,746 --> 02:19:41,314 THIS IS WHAT IS THE TRAINING, 3571 02:19:41,314 --> 02:19:41,581 RIGHT? 3572 02:19:41,581 --> 02:19:44,084 WHAT IS THE TRAINING, WHAT IS 3573 02:19:44,084 --> 02:19:46,953 THE ORIENTATION, WHAT IS NEEDED 3574 02:19:46,953 --> 02:19:49,055 BY ORGANIZATIONS, AND THERE'S A 3575 02:19:49,055 --> 02:19:51,224 REALLY WIDE VARIETY OF 3576 02:19:51,224 --> 02:19:54,060 CAPACITIES AND INVOLVEMENT IN 3577 02:19:54,060 --> 02:19:55,862 COMMUNITY ENGAGEMENT PROGRAMS, 3578 02:19:55,862 --> 02:19:58,198 AMONGST ADVOCACY ORGANIZATIONS. 3579 02:19:58,198 --> 02:19:59,599 AND FOR SOME, THERE WAS A DESIRE 3580 02:19:59,599 --> 02:20:01,001 TO KNOW MORE ABOUT WHAT IS THE 3581 02:20:01,001 --> 02:20:03,503 VALUE OF THIS AND HOW DOES THIS 3582 02:20:03,503 --> 02:20:08,708 RETURN VALUE TO OUR COMMUNITIES. 3583 02:20:08,708 --> 02:20:14,314 FOR OTHERS, THERE ARE QUESTIONS 3584 02:20:14,314 --> 02:20:17,651 OF HOW DO WE DO IT, RIGHT? 3585 02:20:17,651 --> 02:20:22,556 HOW DO WE ACTUALLY LOGISTICALLY 3586 02:20:22,556 --> 02:20:23,423 GET THIS STARTED. 3587 02:20:23,423 --> 02:20:26,092 AND SO WE HOSTED A COUPLE 3588 02:20:26,092 --> 02:20:31,031 GROUPS, AND OUT OF THAT PROCESS 3589 02:20:31,031 --> 02:20:32,265 WE'VE FOUND A NUMBER OF THINGS 3590 02:20:32,265 --> 02:20:34,167 THAT I THINK I'LL TALK ABOUT 3591 02:20:34,167 --> 02:20:36,303 LATER BECAUSE THEY BLEND WITH 3592 02:20:36,303 --> 02:20:37,637 SOME QUESTIONS THAT WILL BE 3593 02:20:37,637 --> 02:20:40,507 ASKED HERE. 3594 02:20:40,507 --> 02:20:43,209 BUT FOR BOTH THE INDUSTRY AND 3595 02:20:43,209 --> 02:20:44,444 ADVOCACY SIDE WE HAVE MEANINGFUL 3596 02:20:44,444 --> 02:20:45,412 INSIGHTS WE'VE GOTTEN FROM 3597 02:20:45,412 --> 02:20:46,980 PARTICIPATION FROM MANY OF YOU 3598 02:20:46,980 --> 02:20:51,451 IN THIS ROOM THAT WILL HELP US 3599 02:20:51,451 --> 02:20:54,020 TO PROVIDE FORMS OF SUPPORT, BE 3600 02:20:54,020 --> 02:20:57,023 IT THINGS LIKE LOGISTICS OR 3601 02:20:57,023 --> 02:20:59,326 CREATING FORUMS WHERE THERE CAN 3602 02:20:59,326 --> 02:21:01,061 BE SHARED LEARNING AMONGST 3603 02:21:01,061 --> 02:21:03,063 DIFFERENT ORGANIZATIONS WITH 3604 02:21:03,063 --> 02:21:03,763 DIFFERENT CAPACITY LEVELS. 3605 02:21:03,763 --> 02:21:05,765 A LOT OF THE ORGANIZATIONS THAT 3606 02:21:05,765 --> 02:21:06,733 HAVE COMMUNITY ENGAGEMENT HAVE 3607 02:21:06,733 --> 02:21:08,068 LEARNED A LOT OF LESSONS AND 3608 02:21:08,068 --> 02:21:10,637 DONE THINGS THE HARD WAY, AND 3609 02:21:10,637 --> 02:21:12,305 THEY HAVE REALLY REFINED THEIR 3610 02:21:12,305 --> 02:21:13,239 PROCESSES THROUGH TRIAL AND 3611 02:21:13,239 --> 02:21:15,308 ERROR OVER THE YEARS. 3612 02:21:15,308 --> 02:21:17,844 AND SO THERE'S A VALUE, 3613 02:21:17,844 --> 02:21:19,245 POTENTIALLY, IN SHARING SOME OF 3614 02:21:19,245 --> 02:21:20,347 THESE LESSONS AND SHARING SOME 3615 02:21:20,347 --> 02:21:25,418 TOOLS THAT HAVE BEEN DEVELOPED. 3616 02:21:25,418 --> 02:21:28,622 AND BY THE IDEA, THAT BY RAISING 3617 02:21:28,622 --> 02:21:33,259 CAPACITY REALLY KIND OF ACROSS 3618 02:21:33,259 --> 02:21:35,128 THE ECOSYSTEM, WE REALLY 3619 02:21:35,128 --> 02:21:37,464 RETURN -- VALUE CAN BE REALLY 3620 02:21:37,464 --> 02:21:39,566 RETURNED ACROSS THE ADVOCACY 3621 02:21:39,566 --> 02:21:41,101 ECOSYSTEM AS WELL AS ENGAGEMENT 3622 02:21:41,101 --> 02:21:42,936 AND TECHNOLOGY DEVELOPMENT EARLY 3623 02:21:42,936 --> 02:21:44,170 ON, RIGHT? 3624 02:21:44,170 --> 02:21:45,772 NOT JUST GIVING INPUT BUT, HEY, 3625 02:21:45,772 --> 02:21:47,140 WHAT'S THE PROBLEM YOU NEED US 3626 02:21:47,140 --> 02:21:47,674 TO SOLVE? 3627 02:21:47,674 --> 02:21:49,275 AND WHAT ARE THE QUESTIONS WE 3628 02:21:49,275 --> 02:21:50,410 SHOULD BE ASKING, AND WHAT ARE 3629 02:21:50,410 --> 02:21:53,046 THE THINGS WE HAVEN'T THOUGHT 3630 02:21:53,046 --> 02:21:53,213 OF? 3631 02:21:53,213 --> 02:21:54,714 AND HERE'S TECHNOLOGY WE'VE 3632 02:21:54,714 --> 02:21:57,083 DEVELOPED; HOW WOULD YOU USE IT. 3633 02:21:57,083 --> 02:21:57,283 RIGHT? 3634 02:21:57,283 --> 02:21:58,785 THESE QUESTIONS MAKE ALL THE 3635 02:21:58,785 --> 02:22:02,322 DIFFERENCE IN SOMETHING THAT 3636 02:22:02,322 --> 02:22:03,923 BECOMES ACTUALLY -- THAT'S 3637 02:22:03,923 --> 02:22:04,290 GREAT. 3638 02:22:04,290 --> 02:22:06,259 YOU FLAGGED A NUMBER OF THINGS 3639 02:22:06,259 --> 02:22:06,960 THAT WE'RE COMING TO. 3640 02:22:06,960 --> 02:22:08,662 ONE OF THE TYPES OF PARTNERSHIPS 3641 02:22:08,662 --> 02:22:10,630 WE MIGHT BE TALKING ABOUT HERE 3642 02:22:10,630 --> 02:22:12,165 IS AMONG PATIENT GROUPS, IN THE 3643 02:22:12,165 --> 02:22:15,435 FORM OF THE COALITION, HOW TO 3644 02:22:15,435 --> 02:22:16,703 LEVERAGE EACH OTHER'S STRENGTHS 3645 02:22:16,703 --> 02:22:19,239 AND TO SUPPORT EACH OTHER'S 3646 02:22:19,239 --> 02:22:20,807 CAPACITY. 3647 02:22:20,807 --> 02:22:21,775 YOU FLAGGED INDUSTRY 3648 02:22:21,775 --> 02:22:22,642 PARTNERSHIPS, OBVIOUSLY DR. 3649 02:22:22,642 --> 02:22:25,712 LODISH TOLD US ABOUT THE 3650 02:22:25,712 --> 02:22:26,613 FOUNDATIONAL CF FOUNDATION, 3651 02:22:26,613 --> 02:22:30,350 PEOPLE FIND IT HARD TO RELATE 3652 02:22:30,350 --> 02:22:31,851 BECAUSE THEY ARE SO BIG BUT THEY 3653 02:22:31,851 --> 02:22:34,621 ARE A RARE DISEASE GROUP AND THE 3654 02:22:34,621 --> 02:22:36,056 VALUE THEY PROVIDED TO AURORA 3655 02:22:36,056 --> 02:22:40,627 AND VERTEX WAS NOT JUST MONEY 3656 02:22:40,627 --> 02:22:42,629 BUT ACCESS TO THEIR CENTER'S 3657 02:22:42,629 --> 02:22:42,929 EXCELLENCE. 3658 02:22:42,929 --> 02:22:44,564 THEY KNEW THE PATIENTS, GOT THEM 3659 02:22:44,564 --> 02:22:45,799 INVOLVED IN TRIALS, HAD PATIENT 3660 02:22:45,799 --> 02:22:47,434 DATA IN THE REGISTRY, ALL THAT 3661 02:22:47,434 --> 02:22:48,468 HAD VALUE FOR THE COMPANY IN 3662 02:22:48,468 --> 02:22:50,437 ADDITION TO THE MONEY WHICH WAS 3663 02:22:50,437 --> 02:22:52,405 PROBABLY A DROP IN THE BUCKET OF 3664 02:22:52,405 --> 02:22:53,773 WHAT IT TOOK. 3665 02:22:53,773 --> 02:22:55,308 WE'LL COME BACK TO THOSE THINGS. 3666 02:22:55,308 --> 02:22:59,846 TO THE QUESTION HOW YOU GET 3667 02:22:59,846 --> 02:23:04,918 STARTED I'LL TURN TO JOE 3668 02:23:04,918 --> 02:23:07,454 VANDIGO. 3669 02:23:07,454 --> 02:23:17,964 TELL PEOPLE WHAT APPLIED P EX 3670 02:23:18,598 --> 02:23:20,133 DOES. 3671 02:23:20,133 --> 02:23:21,434 >> I'M A HEALTH RESEARCHER BY 3672 02:23:21,434 --> 02:23:23,570 TRAINING, MY CAREER HAS BEEN 3673 02:23:23,570 --> 02:23:25,004 ASKING PEOPLE DID YOU ENGAGE 3674 02:23:25,004 --> 02:23:26,740 PATIENTS, IF THEY SAY NO WE GET 3675 02:23:26,740 --> 02:23:28,374 TO WORK TOGETHER. 3676 02:23:28,374 --> 02:23:30,744 AT APPLIED PATIENT EXPERIENCE OR 3677 02:23:30,744 --> 02:23:32,278 JOB IS TO COLLECT PATIENT 3678 02:23:32,278 --> 02:23:34,681 EXPERIENCE DATA AND HELP FOLKS 3679 02:23:34,681 --> 02:23:36,783 APPLY TO MEET NEEDS, WHETHER 3680 02:23:36,783 --> 02:23:38,184 ADVOCACY MISSION, PRODUCT 3681 02:23:38,184 --> 02:23:39,753 DEVELOPMENT MISSION, WHATEVER 3682 02:23:39,753 --> 02:23:41,921 THE PURPOSE IS. 3683 02:23:41,921 --> 02:23:43,323 THE DOSSIER, THE KEY REASON I'M 3684 02:23:43,323 --> 02:23:45,725 HERE TO SPEAK TO YOU TODAY, BUT 3685 02:23:45,725 --> 02:23:48,128 THE SECOND PIECE WE ALSO WORK 3686 02:23:48,128 --> 02:23:50,163 WITH PATIENT GROUPS TO 3687 02:23:50,163 --> 02:23:50,897 OPERATIONALIZE PATIENT-LED 3688 02:23:50,897 --> 02:23:52,565 RESEARCH AS WELL. 3689 02:23:52,565 --> 02:23:53,733 SOMETHING THAT'S GROWN OUT OF 3690 02:23:53,733 --> 02:23:55,969 THAT THROUGH A COLLABORATION 3691 02:23:55,969 --> 02:23:58,371 WITH NATIONAL HEALTH COUNCIL, 3692 02:23:58,371 --> 02:24:00,940 PSMD, IS THIS CONCEPT OF A 3693 02:24:00,940 --> 02:24:02,342 PATIENT EXPERIENCE DOSSIER. 3694 02:24:02,342 --> 02:24:06,246 AND IT GREW OUT OF THIS DESIRE 3695 02:24:06,246 --> 02:24:07,347 FOR PATIENT ORGANIZATIONS TO 3696 02:24:07,347 --> 02:24:11,050 HAVE -- AGAIN TO YOUR POINT ON 3697 02:24:11,050 --> 02:24:12,786 JUST CAPACITY -- TO RESPOND TO 3698 02:24:12,786 --> 02:24:15,388 REQUEST, WHEN INFORMATION IS IN 3699 02:24:15,388 --> 02:24:19,726 20 PLACES THERE'S SOME NOTES 3700 02:24:19,726 --> 02:24:20,260 FROM A PATIENT, MEETINGS, 3701 02:24:20,260 --> 02:24:22,796 THERE'S SOME ON THE WEBSITE, OH, 3702 02:24:22,796 --> 02:24:24,631 TWO PAPERS PUBLISHED LAST YEAR, 3703 02:24:24,631 --> 02:24:28,635 AND THE GOAL OF DOSSIERS IS TO 3704 02:24:28,635 --> 02:24:30,036 TAKE THIS INFORMATION, COLLECT 3705 02:24:30,036 --> 02:24:33,273 IT INTO A FORMAT THAT'S 3706 02:24:33,273 --> 02:24:34,707 TEMPLATED AND CONSISTENT, AND, 3707 02:24:34,707 --> 02:24:37,010 AGAIN, CAN BE DONE IN A 3708 02:24:37,010 --> 02:24:38,545 MULTITUDE OF WAYS. 3709 02:24:38,545 --> 02:24:39,813 I'M HAPPY TO CONTINUE THE 3710 02:24:39,813 --> 02:24:42,448 DISCUSSION IN TERMS OF FIGURING 3711 02:24:42,448 --> 02:24:44,651 OUT BECAUSE WE'VE JUST BEGUN TO 3712 02:24:44,651 --> 02:24:46,352 PILOT IT, INTERESTED IN THOUGHTS 3713 02:24:46,352 --> 02:24:47,387 HOW TO OPERATIONALIZE. 3714 02:24:47,387 --> 02:24:49,656 THE END GOAL IS THIS IS 3715 02:24:49,656 --> 02:24:50,623 SOMETHING THAT CAN BEGIN THE 3716 02:24:50,623 --> 02:24:52,192 CONVERSATION BY TAKING THE DATA 3717 02:24:52,192 --> 02:24:58,298 THAT'S CURRENTLY KNOWN ABOUT THE 3718 02:24:58,298 --> 02:24:58,832 PATIENT JOURNEY INCLUDING 3719 02:24:58,832 --> 02:25:02,302 STARTING AT THE TIMES OF 3720 02:25:02,302 --> 02:25:02,802 DIAGNOSIS. 3721 02:25:02,802 --> 02:25:04,370 REPRESENTATIVE WEXTON SET THIS 3722 02:25:04,370 --> 02:25:08,942 UP AS SHE DESCRIBED HER JOURNEY, 3723 02:25:08,942 --> 02:25:10,977 HOW POWERFUL IT IS AND THE 3724 02:25:10,977 --> 02:25:13,880 FOUNDATIONAL PIECE TO UNDERSTAND 3725 02:25:13,880 --> 02:25:14,614 WHAT IS WHAT UNDERPINS 3726 02:25:14,614 --> 02:25:16,549 PARTNERSHIP AND RELATIONSHIP. 3727 02:25:16,549 --> 02:25:18,885 THE DOSSIER INCLUDES EXPERIENCES 3728 02:25:18,885 --> 02:25:21,588 WITH CURRENT TREATMENT, 3729 02:25:21,588 --> 02:25:22,455 PROVIDERS YOU'RE SEEING, HOW YOU 3730 02:25:22,455 --> 02:25:24,757 FEEL YOUR NEEDS ARE MET WITH 3731 02:25:24,757 --> 02:25:26,059 CURRENT SLATE OF TREATMENTS, 3732 02:25:26,059 --> 02:25:28,494 WHAT OUTCOMES ARE IMPORTANT TO 3733 02:25:28,494 --> 02:25:31,364 YOU. 3734 02:25:31,364 --> 02:25:32,365 GETTING THAT DOCUMENTED HELPS 3735 02:25:32,365 --> 02:25:35,134 GET WHAT'S KNOWN OUT THERE. 3736 02:25:35,134 --> 02:25:36,236 THAT'S THE PUBLICLY AVAILABLE 3737 02:25:36,236 --> 02:25:37,237 LIVING RESOURCE. 3738 02:25:37,237 --> 02:25:42,976 AND THE SECOND PIECE WE FOUND IS 3739 02:25:42,976 --> 02:25:45,111 THAT HELPFUL AS WE'VE PILOTED IT 3740 02:25:45,111 --> 02:25:45,879 I WAS GAPS. 3741 02:25:45,879 --> 02:25:48,615 WE'VE GOT A TON OF INFORMATION 3742 02:25:48,615 --> 02:25:50,583 WHAT HELPS FOLKS BE ADHERENT, A 3743 02:25:50,583 --> 02:25:53,186 TON OF INFORMATION ON DIAGNOSIS 3744 02:25:53,186 --> 02:25:54,821 JOURNEY BUT PERHAPS WE'RE 3745 02:25:54,821 --> 02:25:57,624 LACKING IN PERHAPS UNMET NEEDS, 3746 02:25:57,624 --> 02:26:00,994 OR HOW SOMEONE'S CONDITION MAY 3747 02:26:00,994 --> 02:26:01,895 AFFECT THEIR PERSONAL FINANCES, 3748 02:26:01,895 --> 02:26:05,899 ABILITY TO WORK, RELATIONSHIPS 3749 02:26:05,899 --> 02:26:07,300 WITH THEIR FAMILY. 3750 02:26:07,300 --> 02:26:08,902 COULD PARTNER TO FILL IN TERMS 3751 02:26:08,902 --> 02:26:14,407 OF NEED FOR FUTURE THERAPY. 3752 02:26:14,407 --> 02:26:16,576 >> THAT'S GREAT. 3753 02:26:16,576 --> 02:26:18,645 I LOVE THIS IDEA OF A TOOL THAT 3754 02:26:18,645 --> 02:26:22,615 CAN BE USED ACROSS A LOT OF 3755 02:26:22,615 --> 02:26:22,882 CONTEXTS. 3756 02:26:22,882 --> 02:26:24,550 IT MIGHT HAVE DIFFERENT MEANINGS 3757 02:26:24,550 --> 02:26:25,418 FOR DIFFERENT AUDIENCES, WE NEED 3758 02:26:25,418 --> 02:26:27,387 TO DO MORE IN AN AREA FOR 3759 02:26:27,387 --> 02:26:28,421 CERTAIN TYPE OF PARTNERSHIP BUT 3760 02:26:28,421 --> 02:26:30,924 I FEEL LIKE IT'S A GREAT WAY TO 3761 02:26:30,924 --> 02:26:31,758 GET STARTED TO THINK WHAT DO YOU 3762 02:26:31,758 --> 02:26:35,028 HAVE OF VALUE TO A NUMBER OF 3763 02:26:35,028 --> 02:26:35,361 STAKEHOLDERS. 3764 02:26:35,361 --> 02:26:36,896 THE OTHER THING WE CAN COME BACK 3765 02:26:36,896 --> 02:26:39,465 TO LATER IS ACTUALLY THE IDEA OF 3766 02:26:39,465 --> 02:26:39,666 VALUE. 3767 02:26:39,666 --> 02:26:41,968 A LOT OF CONVERSATION HERE IS 3768 02:26:41,968 --> 02:26:42,568 ABOUT THERAPEUTIC DEVELOPMENT 3769 02:26:42,568 --> 02:26:44,737 BUT A LOT OF GROUPS HAVE 3770 02:26:44,737 --> 02:26:46,105 APPROVED THERAPIES, IT HAS TO 3771 02:26:46,105 --> 02:26:48,107 GET PAID FOR AND PATIENT 3772 02:26:48,107 --> 02:26:49,042 ORGANIZATION JOURNEY IS NOT OVER 3773 02:26:49,042 --> 02:26:52,946 WHEN SOMETHING GETS THROUGH FDA 3774 02:26:52,946 --> 02:26:56,382 AND WE ALSO HAVE TO ASCRIBE 3775 02:26:56,382 --> 02:26:58,584 VALUE TO PAYERS AS WELL. 3776 02:26:58,584 --> 02:27:02,088 I'M GOING TO COURTNEY 3777 02:27:02,088 --> 02:27:03,790 SILVERTHORN FROM FOUNDATION FOR 3778 02:27:03,790 --> 02:27:06,392 NIH, MOST PEOPLE KNOW WHAT FNIH 3779 02:27:06,392 --> 02:27:09,963 IS, MAYBE NOT OUTSIDE THE ROOM 3780 02:27:09,963 --> 02:27:11,297 BUT ITS MIDDLE NAME IS 3781 02:27:11,297 --> 02:27:12,165 PUBLIC/PRIVATE PARTNERSHIPS. 3782 02:27:12,165 --> 02:27:14,334 THIS WAS A SPECIALTY FOR YOU 3783 02:27:14,334 --> 02:27:15,034 ALL. 3784 02:27:15,034 --> 02:27:19,038 I DO IT EXTRAORDINARILY WELL AND 3785 02:27:19,038 --> 02:27:19,405 ACROSS SPACES. 3786 02:27:19,405 --> 02:27:24,978 >> THANK YOU FOR THE COMPLIMENT. 3787 02:27:24,978 --> 02:27:27,480 COURTNEY SILVERTHORN, STRATEGIC 3788 02:27:27,480 --> 02:27:28,548 ALLIANCES AND INNOVATION. 3789 02:27:28,548 --> 02:27:30,917 FOUNDATION FOR NIH IS NOT THE 3790 02:27:30,917 --> 02:27:32,618 NIH. 3791 02:27:32,618 --> 02:27:34,754 WE ARE A SEPARATE 501(c)3 3792 02:27:34,754 --> 02:27:35,588 NON-PROFIT ESTABLISHED BY 3793 02:27:35,588 --> 02:27:36,022 CONGRESS. 3794 02:27:36,022 --> 02:27:38,157 WE'VE BEEN AROUND FOR ABOUT 27 3795 02:27:38,157 --> 02:27:38,658 YEARS. 3796 02:27:38,658 --> 02:27:39,993 AND OUR MISSION IS TO SUPPORT 3797 02:27:39,993 --> 02:27:41,928 THE MISSION OF THE NIH. 3798 02:27:41,928 --> 02:27:43,730 SO ANYTHING THAT TOUCHES HUMAN 3799 02:27:43,730 --> 02:27:45,498 HEALTH IS WITHIN THE SCOPE OF 3800 02:27:45,498 --> 02:27:47,734 OUR MISSION. 3801 02:27:47,734 --> 02:27:50,370 THAT IS SOMETIMES A CHALLENGE 3802 02:27:50,370 --> 02:27:51,971 AND OPPORTUNITY BECAUSE WHEN YOU 3803 02:27:51,971 --> 02:27:52,939 ARE -- THE AMERICAN HEART 3804 02:27:52,939 --> 02:27:54,574 SITUATION IS CLEAR WHAT YOU DO 3805 02:27:54,574 --> 02:27:56,509 WHEN YOU'RE THE FOUNDATION FOR 3806 02:27:56,509 --> 02:27:59,445 THE NIH, MAYBE NOT SO MUCH, BUT 3807 02:27:59,445 --> 02:28:02,215 WE DO HAVE A WIDE RANGE OF 3808 02:28:02,215 --> 02:28:04,117 PARTNERSHIPS ACROSS A NUMBER OF 3809 02:28:04,117 --> 02:28:06,352 DIFFERENT HEALTH SPACES. 3810 02:28:06,352 --> 02:28:08,888 REALLY OUR MISSION BOILS DOWN TO 3811 02:28:08,888 --> 02:28:10,723 THREE MAIN PILLARS. 3812 02:28:10,723 --> 02:28:12,692 ONE IS SUPPORTING SCIENCE. 3813 02:28:12,692 --> 02:28:14,627 WE DO THAT PRIMARILY THROUGH 3814 02:28:14,627 --> 02:28:16,129 PUBLIC/PRIVATE PARTNERSHIPS IN 3815 02:28:16,129 --> 02:28:17,864 THE PRE-COMPETITIVE SPACE. 3816 02:28:17,864 --> 02:28:18,931 THERE WAS A COMMENT IN THE 3817 02:28:18,931 --> 02:28:20,566 EARLIER PANEL ABOUT THE 3818 02:28:20,566 --> 02:28:21,968 CHALLENGES OF BRINGING MULTIPLE 3819 02:28:21,968 --> 02:28:23,770 COMPANIES TOGETHER, WHAT WE 3820 02:28:23,770 --> 02:28:28,508 FOUND IS THAT WHEN WE ARE 3821 02:28:28,508 --> 02:28:29,509 IDENTIFYING OPPORTUNITIES THAT 3822 02:28:29,509 --> 02:28:32,078 BENEFIT MORE THAN ONE COMPANY, 3823 02:28:32,078 --> 02:28:34,680 MORE THAN ONE SECTOR OF THE 3824 02:28:34,680 --> 02:28:36,783 FIELD, WE CAN BRING TOGETHER 3825 02:28:36,783 --> 02:28:39,152 ORGANIZATIONS THAT WOULD BE 3826 02:28:39,152 --> 02:28:40,820 COMPETITORS OUTSIDE OF OUR SPACE 3827 02:28:40,820 --> 02:28:42,655 TO COME AND WORK TOGETHER WITH 3828 02:28:42,655 --> 02:28:44,323 PATIENT GROUPS WITH THE NIH, 3829 02:28:44,323 --> 02:28:46,359 WITH THE FDA, TO REALLY MOVE THE 3830 02:28:46,359 --> 02:28:48,261 ENTIRE FIELD FORWARD IN A WAY 3831 02:28:48,261 --> 02:28:50,530 THAT BENEFITS EVERYONE. 3832 02:28:50,530 --> 02:28:52,899 WE ALSO HAVE PILLARS ON 3833 02:28:52,899 --> 02:28:54,400 SUPPORTING SCIENTISTS, AS WELL 3834 02:28:54,400 --> 02:28:57,203 AS HELPING DEVELOP TRUST IN 3835 02:28:57,203 --> 02:28:58,337 SCIENCE. 3836 02:28:58,337 --> 02:29:01,107 BUT IN THE CONTEXT OF PATIENT 3837 02:29:01,107 --> 02:29:02,809 ENGAGEMENT, WE HAVE REALLY 3838 02:29:02,809 --> 02:29:06,412 DOUBLED DOWN ON A COMMITMENT TO 3839 02:29:06,412 --> 02:29:07,947 100% PATIENT ENGAGEMENT IN EVERY 3840 02:29:07,947 --> 02:29:09,482 PUBLIC/PRIVATE PARTNERSHIP THAT 3841 02:29:09,482 --> 02:29:10,149 WE DEVELOP AND EXECUTE. 3842 02:29:10,149 --> 02:29:14,587 AND SO WHAT THAT MEANS FOR US IS 3843 02:29:14,587 --> 02:29:17,090 THAT EVERY PARTNERSHIP THAT WE 3844 02:29:17,090 --> 02:29:18,991 TAKE ON GOES THROUGH DESIGN 3845 02:29:18,991 --> 02:29:22,228 PHASE WHEN WE'RE BRINGING 3846 02:29:22,228 --> 02:29:25,932 STAKEHOLDERS ACROSS THE SPECTRUM 3847 02:29:25,932 --> 02:29:27,834 FROM BIOTECH LEADERS, PATIENT 3848 02:29:27,834 --> 02:29:30,036 GROUPS, PATIENTS WITH LIVED 3849 02:29:30,036 --> 02:29:31,471 EXPERIENCE, ACADEMICS, SO FORTH, 3850 02:29:31,471 --> 02:29:33,506 TO COME TOGETHER TO DEFINE THE 3851 02:29:33,506 --> 02:29:37,810 PROBLEM, WHAT IS THE WHITE SPACE 3852 02:29:37,810 --> 02:29:39,512 FNIH CAN MOVE SOMETHING FORWARD 3853 02:29:39,512 --> 02:29:42,748 IN, WHAT TYPES OF RESEARCH 3854 02:29:42,748 --> 02:29:43,249 REQUIREMENTS ARE NEEDED, 3855 02:29:43,249 --> 02:29:44,784 RESOURCES IN-KIND AND FINANCIAL, 3856 02:29:44,784 --> 02:29:48,154 WHAT ARE THE TIMELINES AND 3857 02:29:48,154 --> 02:29:49,122 DELIVERABLES BECAUSE MOST OF 3858 02:29:49,122 --> 02:29:51,157 WHAT WE DO IS FUNDRAISING AND 3859 02:29:51,157 --> 02:29:52,058 THEN PROJECT MANAGEMENT. 3860 02:29:52,058 --> 02:29:55,027 IN THE EXECUTION OF OUR 3861 02:29:55,027 --> 02:29:56,863 PROJECTS, WE REALLY STARTED TO 3862 02:29:56,863 --> 02:29:58,798 SET THE STANDARD IN ACCELERATING 3863 02:29:58,798 --> 02:30:01,834 MEDICINES PARTNERSHIP PROGRAM, A 3864 02:30:01,834 --> 02:30:04,337 SERIES OF PARTNERSHIPS, SOME 3865 02:30:04,337 --> 02:30:06,873 DATING BACK TO 2014, THE PROGRAM 3866 02:30:06,873 --> 02:30:08,841 CELEBRATED ITS 10-YEAR 3867 02:30:08,841 --> 02:30:10,042 ANNIVERSARY LAST YEAR. 3868 02:30:10,042 --> 02:30:11,611 THERE ARE LARGE SCALE 3869 02:30:11,611 --> 02:30:14,714 LONGER--TERM RUNNING BETWEEN 5 3870 02:30:14,714 --> 02:30:18,951 AND 7 YEARS, TO DEVELOP 3871 02:30:18,951 --> 02:30:22,388 RESOURCES, DATASETS, PROTOCOLS, 3872 02:30:22,388 --> 02:30:23,022 VALIDATED PROCEDURES, CONSENSUS 3873 02:30:23,022 --> 02:30:25,658 PROCESSES, IN A NUMBER OF 3874 02:30:25,658 --> 02:30:27,093 THERAPEUTIC AREAS. 3875 02:30:27,093 --> 02:30:28,561 EACH PARTNERSHIP IS A LITTLE 3876 02:30:28,561 --> 02:30:32,465 DIFFERENT BUT WITHIN THE AMP WE 3877 02:30:32,465 --> 02:30:33,599 HAVE PATIENT ADVOCATES, PATIENTS 3878 02:30:33,599 --> 02:30:34,767 WITH LIVED EXPERIENCE WHO SERVE 3879 02:30:34,767 --> 02:30:38,271 AS CO-CHAIRS OF THE STEERING 3880 02:30:38,271 --> 02:30:38,838 COMMITTEES. 3881 02:30:38,838 --> 02:30:40,873 FOR EXAMPLE, CARLOS IS A PATIENT 3882 02:30:40,873 --> 02:30:44,510 WITH LIVED EXPERIENCE, ALSO PART 3883 02:30:44,510 --> 02:30:47,947 OF NOMI, THE CO-CHAIR IN 3884 02:30:47,947 --> 02:30:49,649 SCHIZOPHRENIA, JANET CHURCH 3885 02:30:49,649 --> 02:30:54,387 PRESIDENT OF THE SHÖGREN'S 3886 02:30:54,387 --> 02:30:56,455 FOUNDATION WITH LIVED EXPERIENCE 3887 02:30:56,455 --> 02:30:59,125 CO-CHAIRS IN IMMUNE DISEASES. 3888 02:30:59,125 --> 02:31:00,626 PROTEIN THERAPY CONSORTIUM, WE 3889 02:31:00,626 --> 02:31:04,096 HAVE A NUMBER OF PATIENT 3890 02:31:04,096 --> 02:31:04,764 ADVOCACY GROUPS THAT SERVE ON 3891 02:31:04,764 --> 02:31:11,103 THE STEERING COMMITTEE AS WELL 3892 02:31:11,103 --> 02:31:13,239 AS A GROUP IN THE PORTFOLIO. 3893 02:31:13,239 --> 02:31:15,641 SOMETIMES BRINGING IN PATIENT 3894 02:31:15,641 --> 02:31:16,576 GROUPS FOR SPECIFIC POINTS 3895 02:31:16,576 --> 02:31:18,678 WITHIN THE PROJECT DURING THE 3896 02:31:18,678 --> 02:31:20,713 EXECUTION, TO SERVE IN A WORKING 3897 02:31:20,713 --> 02:31:22,782 GROUP, PROVIDE INPUTS. 3898 02:31:22,782 --> 02:31:24,150 SO REALLY SPANNING THE PANOPLY 3899 02:31:24,150 --> 02:31:26,352 OF THE WORK WE DO. 3900 02:31:26,352 --> 02:31:28,521 WE'RE BUILDING IN PATIENT 3901 02:31:28,521 --> 02:31:31,057 ENGAGEMENT, PATIENT INPUT AT 3902 02:31:31,057 --> 02:31:33,259 EVERY LEVEL, AND WITHIN THE LAST 3903 02:31:33,259 --> 02:31:36,362 3 YEARS AGO WE ALSO HAVE NOW A 3904 02:31:36,362 --> 02:31:38,331 DIRECTOR OF PATIENT ENGAGEMENT 3905 02:31:38,331 --> 02:31:42,134 WHO IS SERVING AS A CONSULTATION 3906 02:31:42,134 --> 02:31:44,136 OF SORTS, SIMILAR TO THE WORK 3907 02:31:44,136 --> 02:31:47,406 YOU'RE DOING BUT INTERNAL TO THE 3908 02:31:47,406 --> 02:31:49,242 FOUNDATION WHO IS HELPING THE 3909 02:31:49,242 --> 02:31:53,112 DESIGN TEAM, HELPING THE STAFF, 3910 02:31:53,112 --> 02:31:59,885 HELPING THE PROJECT STEERING 3911 02:31:59,885 --> 02:32:02,221 COMMITTEE, BE AS EFFICIENT AND 3912 02:32:02,221 --> 02:32:03,289 SUCCESSFUL AS POSSIBLE IN 3913 02:32:03,289 --> 02:32:06,058 GETTING THAT PATIENT INPUT 3914 02:32:06,058 --> 02:32:07,627 INCORPORATED INTO THE PROJECT. 3915 02:32:07,627 --> 02:32:10,396 >> THAT'S GREAT. 3916 02:32:10,396 --> 02:32:12,131 GOOD TO KNOW, EVERYONE SHOULD 3917 02:32:12,131 --> 02:32:13,165 KNOW THE PLATFORMS EXIST WHERE 3918 02:32:13,165 --> 02:32:14,400 YOU CAN COME INTO PARTNERSHIP 3919 02:32:14,400 --> 02:32:17,203 WITH A LOT OF OTHER KEY 3920 02:32:17,203 --> 02:32:18,604 STAKEHOLDERS IN THE COMMUNITY 3921 02:32:18,604 --> 02:32:20,806 AND INDUSTRY IS OFTEN PICKING UP 3922 02:32:20,806 --> 02:32:21,540 THE TAB. 3923 02:32:21,540 --> 02:32:24,810 SO YOU MAY NOT EVEN NEED TO 3924 02:32:24,810 --> 02:32:26,812 PARTICIPATE AT THAT LEVEL. 3925 02:32:26,812 --> 02:32:28,681 BUT, YEAH, VERY EFFECTIVE 3926 02:32:28,681 --> 02:32:30,016 PARTNERSHIPS WITH THE FNIH. 3927 02:32:30,016 --> 02:32:31,984 YOU DON'T HAVE TO ANSWER NOW 3928 02:32:31,984 --> 02:32:33,719 COURTNEY, BUT WE'D LOVE TO KNOW 3929 02:32:33,719 --> 02:32:35,688 IF YOU HEARD ANYTHING FROM 3930 02:32:35,688 --> 02:32:36,889 PATIENT ORGANIZATIONS OR PATIENT 3931 02:32:36,889 --> 02:32:39,392 PEOPLE WITH LIVED EXPERIENCES IN 3932 02:32:39,392 --> 02:32:41,093 THE COURSE OF ENGAGEMENTS THAT 3933 02:32:41,093 --> 02:32:41,727 WERE STRIKING OR CHANGED WHAT 3934 02:32:41,727 --> 02:32:44,230 THE AIMS OF THE PROJECT MIGHT BE 3935 02:32:44,230 --> 02:32:47,366 OR SOMETHING, YOU DON'T HAVE TO 3936 02:32:47,366 --> 02:32:50,136 ANSWER THAT NOW. 3937 02:32:50,136 --> 02:32:53,306 I'LL TURN TO SHEENA POSEY 3938 02:32:53,306 --> 02:32:55,941 NORRIS, NATIONAL ACADEMIES OF 3939 02:32:55,941 --> 02:32:57,677 SCIENCE, ENGINEERING, MEDICINE. 3940 02:32:57,677 --> 02:32:59,011 I THINK EVERYONE IS FAMILIAR 3941 02:32:59,011 --> 02:33:01,147 WITH THE INCREDIBLE WORK THE 3942 02:33:01,147 --> 02:33:02,281 NATIONAL ACADEMIES HAS DONE OVER 3943 02:33:02,281 --> 02:33:03,883 MANY YEARS AND RIGOROUS SCIENCE 3944 02:33:03,883 --> 02:33:06,152 THEY ALWAYS BRING TO THE FORE. 3945 02:33:06,152 --> 02:33:10,222 BUT THEY HAVE ALSO BEEN VERY 3946 02:33:10,222 --> 02:33:11,557 INTERESTED IN ACTION 3947 02:33:11,557 --> 02:33:12,958 COLLABORATIVES IN RECENT YEARS, 3948 02:33:12,958 --> 02:33:13,659 SUPER INTERESTING, AND SHEENA 3949 02:33:13,659 --> 02:33:15,294 TOLD US ABOUT ONE THAT'S 3950 02:33:15,294 --> 02:33:16,929 RELEVANT TO OUR TOPIC TODAY. 3951 02:33:16,929 --> 02:33:18,364 INTRODUCE YOURSELF AND TALK 3952 02:33:18,364 --> 02:33:18,698 ABOUT THAT. 3953 02:33:18,698 --> 02:33:21,867 >> THANK YOU SO MUCH. 3954 02:33:21,867 --> 02:33:24,603 THANK YOU, AGAIN, TO DR. 3955 02:33:24,603 --> 02:33:28,040 KOROSHETZ, TO KATIE, SHEILA, FOR 3956 02:33:28,040 --> 02:33:29,108 INVITING ME, TRULY HONORED AND 3957 02:33:29,108 --> 02:33:30,743 APPRECIATE THE SUPPORT FROM ALL 3958 02:33:30,743 --> 02:33:32,478 OF OUR SPONSORS REPRESENTED IN 3959 02:33:32,478 --> 02:33:37,350 THE ROOM AND MANY WHO 3960 02:33:37,350 --> 02:33:38,951 VOLUNTEERED. 3961 02:33:38,951 --> 02:33:42,355 I'M SHEENA POSEY NORRIS, I'M 3962 02:33:42,355 --> 02:33:43,956 ALSO SENIOR PROGRAM OFFICER IN 3963 02:33:43,956 --> 02:33:45,658 THE HEALTH AND MEDICINE ARM OF 3964 02:33:45,658 --> 02:33:46,992 THE NATIONAL ACADEMIES. 3965 02:33:46,992 --> 02:33:49,495 FOR CONTEXT IF YOU DON'T HAVE A 3966 02:33:49,495 --> 02:33:50,629 MASSIVE NATIONAL ACADEMIES BOOK 3967 02:33:50,629 --> 02:33:55,301 IN YOUR BOOK CASE, WHO WE ARE, 3968 02:33:55,301 --> 02:33:57,803 NATIONAL ACADEMIES PRIVATE 3969 02:33:57,803 --> 02:33:58,604 NON-PROFIT INSTITUTIONS PROVIDE 3970 02:33:58,604 --> 02:33:59,372 INDEPENDENT OBJECTIVE ANALYSIS 3971 02:33:59,372 --> 02:34:01,207 ON TOPICS IN SCIENCE, 3972 02:34:01,207 --> 02:34:03,843 ENGINEERING, MEDICINE, AN OLD 3973 02:34:03,843 --> 02:34:04,643 INSTITUTION, ESTABLISHED AND 3974 02:34:04,643 --> 02:34:06,846 CHARTERED BY PRESIDENT LINCOLN 3975 02:34:06,846 --> 02:34:07,113 IN 1863. 3976 02:34:07,113 --> 02:34:10,649 SO WE HAVE BEEN DOING THIS TYPE 3977 02:34:10,649 --> 02:34:13,386 OF WORK, KNOWN FOR CONSENSUS 3978 02:34:13,386 --> 02:34:14,286 STUDIES, PUTTING FOR 3979 02:34:14,286 --> 02:34:15,521 RECOMMENDATIONS TO THE COUNTRY 3980 02:34:15,521 --> 02:34:18,324 AND CONGRESS WHEN MANDATED. 3981 02:34:18,324 --> 02:34:20,226 WE HAVE HONORIFIC ARM OF THE 3982 02:34:20,226 --> 02:34:21,026 NATIONAL ACADEMIES, SEVERAL OF 3983 02:34:21,026 --> 02:34:25,931 YOU ARE PART OF IT, BECAUSE OF 3984 02:34:25,931 --> 02:34:27,767 YOUR CONTRIBUTIONS TO THE FIELD. 3985 02:34:27,767 --> 02:34:30,636 THAT IS THE NATIONAL ACADEMIES 3986 02:34:30,636 --> 02:34:32,004 ITSELF. 3987 02:34:32,004 --> 02:34:35,141 THE FORUM ON NERVOUS SYSTEM 3988 02:34:35,141 --> 02:34:36,242 DISORDERS WAS ESTABLISHED IN 3989 02:34:36,242 --> 02:34:39,044 2006, TO BRING TOGETHER THESE 3990 02:34:39,044 --> 02:34:39,578 DIFFERENT STAKEHOLDERS AND 3991 02:34:39,578 --> 02:34:46,085 LEADERS ACROSS CROSS SECTOR IN 3992 02:34:46,085 --> 02:34:47,353 NEUROSCIENCE, THE FEDERAL 3993 02:34:47,353 --> 02:34:48,654 GOVERNMENT, NINDS, SEVEN OTHER 3994 02:34:48,654 --> 02:34:49,889 I.C. DIRECTORS AND THE BRAIN 3995 02:34:49,889 --> 02:34:50,656 INITIATIVE. 3996 02:34:50,656 --> 02:34:53,492 I SAW JOHN NGAI EARLIER. 3997 02:34:53,492 --> 02:34:55,961 WE BRING TOGETHER NON-PROFIT 3998 02:34:55,961 --> 02:34:59,231 ORGANIZATIONS, THIS COULD BE 3999 02:34:59,231 --> 02:35:00,032 DISEASE ADVOCACY ORGANIZATIONS, 4000 02:35:00,032 --> 02:35:02,435 NON-PROFITS WITHIN THE SPACE OF 4001 02:35:02,435 --> 02:35:03,536 THE SIMON FOUNDATION, DANA 4002 02:35:03,536 --> 02:35:05,504 FOUNDATION, AS WELL AS 4003 02:35:05,504 --> 02:35:06,806 PROFESSIONAL SOCIETIES. 4004 02:35:06,806 --> 02:35:08,808 IN ADDITION TO INDUSTRY, PHARMA, 4005 02:35:08,808 --> 02:35:10,309 BIOTECH ARE REPRESENTED ON OUR 4006 02:35:10,309 --> 02:35:13,345 FORUM AS WELL AS ACADEMIA, WE'RE 4007 02:35:13,345 --> 02:35:15,281 CHAIRED BY DR. FRANCIS JENSON, 4008 02:35:15,281 --> 02:35:17,583 CHAIR OF NEUROLOGY, UNIVERSITY 4009 02:35:17,583 --> 02:35:21,353 OF PENNSYLVANIA, DR. DEANNA 4010 02:35:21,353 --> 02:35:24,323 BARCH, UNIVERSITY OF WASHINGTON. 4011 02:35:24,323 --> 02:35:26,625 THE FORUM IS MEANT TO PROVIDE 4012 02:35:26,625 --> 02:35:32,031 NEUTRAL VENUE. 4013 02:35:32,031 --> 02:35:33,666 WE'RE ALL CONNECTED. 4014 02:35:33,666 --> 02:35:35,201 THAT'S SO TRUE, ALL DEALING WITH 4015 02:35:35,201 --> 02:35:36,936 THE SAME ISSUES, DIFFERENT 4016 02:35:36,936 --> 02:35:37,937 REALMS AND TOPICS. 4017 02:35:37,937 --> 02:35:42,475 OUR JOB IS CREATE THAT SPACE FOR 4018 02:35:42,475 --> 02:35:44,543 EVERYONE TO COME TOGETHER, WHAT 4019 02:35:44,543 --> 02:35:47,813 ARE THE PRESSING ISSUES WE NEED 4020 02:35:47,813 --> 02:35:53,819 TO ELEVATE, THE TOPICS, SET THE 4021 02:35:53,819 --> 02:35:55,488 STAGE FOR FUTURE POLICY ACTION 4022 02:35:55,488 --> 02:35:56,789 WITHIN NEUROSCIENCE. 4023 02:35:56,789 --> 02:35:57,957 WE ARE DISEASE AGNOSTIC. 4024 02:35:57,957 --> 02:36:00,493 THERE ARE TIMES WE DO FOCUS ON 4025 02:36:00,493 --> 02:36:01,627 TOPICS SPECIFICALLY IN DISEASE 4026 02:36:01,627 --> 02:36:03,496 SPACES BUT A LOT OF OUR WORK 4027 02:36:03,496 --> 02:36:07,733 LOOKS AT THE BROADER LEVEL FROM 4028 02:36:07,733 --> 02:36:12,438 BASIC TRANSLATIONAL AND CLINICAL 4029 02:36:12,438 --> 02:36:13,339 SCIENCE TO WORKFORCE 4030 02:36:13,339 --> 02:36:13,772 DEVELOPMENT. 4031 02:36:13,772 --> 02:36:16,642 I'M HERE TO TALK ABOUT AN ACTION 4032 02:36:16,642 --> 02:36:17,243 COLLABORATIVE WE LAUNCHED TWO 4033 02:36:17,243 --> 02:36:17,910 YEARS AGO. 4034 02:36:17,910 --> 02:36:19,378 I HAVE TO GIVE CREDIT TO A 4035 02:36:19,378 --> 02:36:26,218 MEMBER OF OUR TEAM IN THE BACK, 4036 02:36:26,218 --> 02:36:28,020 DR. CHILDERS, AND KIMBERLY OGUN 4037 02:36:28,020 --> 02:36:29,722 IS IN D.C. NOW. 4038 02:36:29,722 --> 02:36:31,223 I HAVE TO RECOGNIZE THEM. 4039 02:36:31,223 --> 02:36:33,792 I'M THE FACE SITTING HERE; THEY 4040 02:36:33,792 --> 02:36:37,763 ARE CARRYING OUT THE WORK. 4041 02:36:37,763 --> 02:36:39,598 THESE ARE PARTICIPANT-DRIVEN 4042 02:36:39,598 --> 02:36:41,300 ACTION ORIENTED EFFORTS. 4043 02:36:41,300 --> 02:36:43,469 WE CONVENE AN ACTIVITY, A 4044 02:36:43,469 --> 02:36:45,170 WORKSHOP ON A TOPIC. 4045 02:36:45,170 --> 02:36:47,339 WE MAY PUT TOGETHER A GROUP OF 4046 02:36:47,339 --> 02:36:48,807 MEMBERS FROM PLANNING COMMITTEE 4047 02:36:48,807 --> 02:36:50,309 AS WELL AS EXTERNAL STAKEHOLDERS 4048 02:36:50,309 --> 02:36:51,977 THAT WANT TO PUSH FOR ACTIONS IN 4049 02:36:51,977 --> 02:36:53,412 THE SPACE. 4050 02:36:53,412 --> 02:36:57,149 FOR EXAMPLE, WE RECENTLY HAD A 4051 02:36:57,149 --> 02:36:58,684 WORKSHOP WITH THE MULTI-MODAL 4052 02:36:58,684 --> 02:37:00,486 BIOMARKERS, AND HAVE DEVELOPING 4053 02:37:00,486 --> 02:37:02,288 A PAPER RELEASED THIS YEAR 4054 02:37:02,288 --> 02:37:04,323 AROUND THAT TOPIC. 4055 02:37:04,323 --> 02:37:05,558 OUR ACTION COLLABORATIVE WAS 4056 02:37:05,558 --> 02:37:09,595 LIVED EXPERIENCE FOR STRONGER 4057 02:37:09,595 --> 02:37:11,864 NEUROSCIENCE, AND THE IMPETUS 4058 02:37:11,864 --> 02:37:13,933 FOR THIS ACTION COLLABORATIVE, 4059 02:37:13,933 --> 02:37:17,369 MERGED AS A RESULT OF THE 4060 02:37:17,369 --> 02:37:20,773 FORUM'S MEMBERS, WE HAVE 50 4061 02:37:20,773 --> 02:37:21,974 MEMBERS, ACROSS VARIOUS ACTORS 4062 02:37:21,974 --> 02:37:24,577 AND STAFF DESIRE TO ELEVATE THE 4063 02:37:24,577 --> 02:37:25,711 VOICE OF INDIVIDUALS WITH LIVED 4064 02:37:25,711 --> 02:37:28,614 EXPERIENCE IN THE WORK WE'RE 4065 02:37:28,614 --> 02:37:29,214 DOING. 4066 02:37:29,214 --> 02:37:31,350 WE'RE ALL TALKING ABOUT 4067 02:37:31,350 --> 02:37:32,751 DECISIONS, POLICY MAKING, BUT 4068 02:37:32,751 --> 02:37:34,086 MISSING THE PEOPLE WHO SHOULD BE 4069 02:37:34,086 --> 02:37:35,054 AT THE TABLE DRIVING THE 4070 02:37:35,054 --> 02:37:37,389 DECISIONS, SO THAT WAS THE 4071 02:37:37,389 --> 02:37:37,723 IMPETUS. 4072 02:37:37,723 --> 02:37:39,892 DR. NICOLE BOSCHY FROM THE 4073 02:37:39,892 --> 02:37:42,394 NATIONAL M.S. SOCIETY WAS 4074 02:37:42,394 --> 02:37:43,729 INSTRUMENTAL IN DRIVING THIS, 4075 02:37:43,729 --> 02:37:50,703 AND DR. TIM COOKSY TO PUSH THE 4076 02:37:50,703 --> 02:37:55,608 MECHANISMS TO PUT TOGETHER THIS 4077 02:37:55,608 --> 02:38:01,947 ACTION COLLABORATIVE. 4078 02:38:01,947 --> 02:38:04,883 WE SURVEYED INDIVIDUALS THAT WE 4079 02:38:04,883 --> 02:38:08,921 ENGAGED FOR WORKSHOPS, FEEDBACK 4080 02:38:08,921 --> 02:38:10,522 WAS WE WANT TO DO MORE. 4081 02:38:10,522 --> 02:38:12,791 OUR STAFF WORKED TO CREATE THE 4082 02:38:12,791 --> 02:38:13,258 MECHANISM. 4083 02:38:13,258 --> 02:38:15,628 I'LL ACKNOWLEDGE WE HAVE VERY 4084 02:38:15,628 --> 02:38:16,395 LARGE PATIENT ADVOCACY 4085 02:38:16,395 --> 02:38:16,996 ORGANIZATIONS RECOMMENDED BUT 4086 02:38:16,996 --> 02:38:19,131 THEY ARE NOT THE VOICE OF THE 4087 02:38:19,131 --> 02:38:19,865 INDIVIDUAL WITH LIVED 4088 02:38:19,865 --> 02:38:20,265 EXPERIENCE. 4089 02:38:20,265 --> 02:38:23,869 THAT WAS REALLY IMPORTANT TO US. 4090 02:38:23,869 --> 02:38:25,504 OBJECTIVE IS TO BRING TOGETHER 4091 02:38:25,504 --> 02:38:27,840 INDIVIDUALS WITH FIRST HAND 4092 02:38:27,840 --> 02:38:28,807 EXPERIENCE WITH MENTAL, 4093 02:38:28,807 --> 02:38:29,808 NEUROLOGICAL, VISUAL CONDITIONS 4094 02:38:29,808 --> 02:38:30,843 TO SHARE EXPERIENCE AND HELP 4095 02:38:30,843 --> 02:38:33,112 GUIDE THE WORK OF THE 4096 02:38:33,112 --> 02:38:34,847 NEUROSCIENCE FORUM, NOT JUST 4097 02:38:34,847 --> 02:38:37,616 OUTPUT, AFTER A MEETING HELPING 4098 02:38:37,616 --> 02:38:40,953 DISSEMINATE BUT BE PART OF THE 4099 02:38:40,953 --> 02:38:41,954 STRATEGY, WHAT TOPICS, ARE WE 4100 02:38:41,954 --> 02:38:44,857 GOING IN THE RIGHT SPACE, IS THE 4101 02:38:44,857 --> 02:38:46,959 SCOPE CORRECT, WHAT THINGS ARE 4102 02:38:46,959 --> 02:38:47,993 WE MISSING? 4103 02:38:47,993 --> 02:38:49,895 THE GOAL, OUR MEMBERS, WE HAVE 4104 02:38:49,895 --> 02:38:54,566 11 MEMBERS IN THE FIRST COHORT, 4105 02:38:54,566 --> 02:38:55,901 SERVES A 3-YEAR TERM, IN THE 4106 02:38:55,901 --> 02:38:57,703 FIRST COHORT, WELCOME TO NOT 4107 02:38:57,703 --> 02:39:00,105 SERVE BUT THEY ARE ENERGIZED AND 4108 02:39:00,105 --> 02:39:02,007 HAVE BEEN ENGAGED. 4109 02:39:02,007 --> 02:39:03,075 THEY PROVIDE FEEDBACK ON THE 4110 02:39:03,075 --> 02:39:05,110 SCOPE OF THE WORK, NOMINATE AND 4111 02:39:05,110 --> 02:39:06,712 SERVE ON PLANNING COMMITTEES AT 4112 02:39:06,712 --> 02:39:09,114 THE NATIONAL COMMITTEES FOR 4113 02:39:09,114 --> 02:39:09,882 OTHER ACTION COLLABORATIVES, 4114 02:39:09,882 --> 02:39:12,084 SOME MEMBERS SERVE ON CONSENSUS 4115 02:39:12,084 --> 02:39:13,952 STUDY COMMITTEES AS WELL TO HELP 4116 02:39:13,952 --> 02:39:14,820 WITH THE RECOMMENDATION 4117 02:39:14,820 --> 02:39:17,089 GENERATION WE DO AT THE 4118 02:39:17,089 --> 02:39:17,423 ACADEMIES. 4119 02:39:17,423 --> 02:39:19,258 THEY VOLUNTEER TO STATE AND 4120 02:39:19,258 --> 02:39:21,794 OTHER ACTIVITIES AS WELL AS 4121 02:39:21,794 --> 02:39:23,529 SHARE EXPERTISE AND PERSPECTIVE 4122 02:39:23,529 --> 02:39:25,097 ON EMERGING TOPICS. 4123 02:39:25,097 --> 02:39:27,032 THROUGHOUT THIS TIME, IT TOOK A 4124 02:39:27,032 --> 02:39:36,608 YEAR FOR THE PROJECT TO COME 4125 02:39:36,608 --> 02:39:36,942 INTO FRUITION. 4126 02:39:36,942 --> 02:39:38,377 WE WERE HAVING CONVERSATIONS 4127 02:39:38,377 --> 02:39:39,111 WITH ORGANIZATIONS THAT ALREADY 4128 02:39:39,111 --> 02:39:40,312 DO THIS. 4129 02:39:40,312 --> 02:39:41,080 THEY DO THIS WELL. 4130 02:39:41,080 --> 02:39:42,881 WHAT ARE THE THINGS WE NEED TO 4131 02:39:42,881 --> 02:39:43,182 DO? 4132 02:39:43,182 --> 02:39:44,683 WE'RE BABIES AT THIS. 4133 02:39:44,683 --> 02:39:45,818 HELP US, GUIDE US. 4134 02:39:45,818 --> 02:39:47,586 WE WON'T WANT TO WAIT LONG TO 4135 02:39:47,586 --> 02:39:48,420 GET EVERYTHING PERFECT. 4136 02:39:48,420 --> 02:39:54,093 WE WANT TO START AND DO IT 4137 02:39:54,093 --> 02:39:55,127 RIGHT. 4138 02:39:55,127 --> 02:39:57,763 SO WE HAD LENGTHY CONVERSATIONS 4139 02:39:57,763 --> 02:40:00,099 ACROSS MANY ORGANIZATIONS, 4140 02:40:00,099 --> 02:40:00,733 PATIENT COUNCILS, INDIVIDUALS, 4141 02:40:00,733 --> 02:40:02,201 TO HELP DRIVE HOW WE WERE GOING 4142 02:40:02,201 --> 02:40:04,436 TO HAVE THIS FUNCTION. 4143 02:40:04,436 --> 02:40:06,872 WE WORKED INTERNALLY TO SET UP 4144 02:40:06,872 --> 02:40:09,241 CASH PAYMENTS FOR INDIVIDUALS 4145 02:40:09,241 --> 02:40:12,044 PARTICIPATING, NOT BENEFITING 4146 02:40:12,044 --> 02:40:13,846 PROFESSIONAL FROM BEING PART OF 4147 02:40:13,846 --> 02:40:15,581 THIS OR ECONOMIC NEED FOR 4148 02:40:15,581 --> 02:40:16,648 ATTENDING MEETINGS, SO THAT WAS 4149 02:40:16,648 --> 02:40:19,418 A REALLY BIG PIECE THAT WE WERE 4150 02:40:19,418 --> 02:40:20,919 COMMITTED TO MAKING SURE WE 4151 02:40:20,919 --> 02:40:21,854 PASSED THAT. 4152 02:40:21,854 --> 02:40:23,222 I KNOW WE'LL GET LATER TO THE 4153 02:40:23,222 --> 02:40:25,090 VALUE AND IMPACT OF SOME WORK 4154 02:40:25,090 --> 02:40:26,792 BECAUSE I HAVE A LOT TO SHARE 4155 02:40:26,792 --> 02:40:31,663 BUT I WANTED TO SHARE THE NEW 4156 02:40:31,663 --> 02:40:32,164 COLLABORATIVE. 4157 02:40:32,164 --> 02:40:33,165 >> THANK YOU. 4158 02:40:33,165 --> 02:40:34,767 DISCIPLINE OF PATIENT ENGAGEMENT 4159 02:40:34,767 --> 02:40:36,068 REACHED THE HALLOWED HALLS OF 4160 02:40:36,068 --> 02:40:37,603 THE NATIONAL ACADEMIES. 4161 02:40:37,603 --> 02:40:40,773 WE'RE IN GOOD SHAPE, GOOD 4162 02:40:40,773 --> 02:40:41,373 STANDING HERE. 4163 02:40:41,373 --> 02:40:44,710 AND I THINK WE'VE HEARD THERE'S 4164 02:40:44,710 --> 02:40:47,813 A LOT OF OPPORTUNITY FOR PATIENT 4165 02:40:47,813 --> 02:40:49,348 COMMUNITIES TO ENGAGE IN 4166 02:40:49,348 --> 02:40:50,382 PARTNERSHIP WITH OTHER 4167 02:40:50,382 --> 02:40:58,624 STAKEHOLDERS THROUGH A LOT OF 4168 02:40:58,624 --> 02:40:59,858 MECHANISMS, ACTION COLLABORATIVE 4169 02:40:59,858 --> 02:41:05,864 AT NATIONAL ACADEMIES, AN AMP 4170 02:41:05,864 --> 02:41:08,033 PROJECT AT FNIH. 4171 02:41:08,033 --> 02:41:09,034 THROUGH, THROUGH, THROUGH. 4172 02:41:09,034 --> 02:41:11,303 HOW CAN THEY THINK ABOUT 4173 02:41:11,303 --> 02:41:11,970 PRIORITIZING? 4174 02:41:11,970 --> 02:41:13,105 THESE ARE THE ORGANIZATIONS WITH 4175 02:41:13,105 --> 02:41:18,010 THE LEAST AMOUNT OF RESOURCES 4176 02:41:18,010 --> 02:41:20,646 TYPICALLY TIME, YOU KNOW, 4177 02:41:20,646 --> 02:41:22,314 FOCUSED, HOW SHOULD GROUPS THINK 4178 02:41:22,314 --> 02:41:24,349 ABOUT HOW TO PRIORITIZE? 4179 02:41:24,349 --> 02:41:26,485 RACHEL, I WAS GOING TO START 4180 02:41:26,485 --> 02:41:27,486 WITH YOU. 4181 02:41:27,486 --> 02:41:37,629 >> I 4182 02:41:38,230 --> 02:41:40,332 >> ANOTHER THING I DIDN'T SAY 4183 02:41:40,332 --> 02:41:42,167 ABOUT OUR PROJECT, IT GREW OUT 4184 02:41:42,167 --> 02:41:44,670 OF A COLLABORATION BETWEEN ABC 4185 02:41:44,670 --> 02:41:47,639 AND THE FDA TAP PROGRAM. 4186 02:41:47,639 --> 02:41:51,143 AND WAYS WE CAN PROVIDE SUPPORTS 4187 02:41:51,143 --> 02:41:53,679 TO COMPANIES THAT HAVE 4188 02:41:53,679 --> 02:41:55,614 BREAKTHROUGH DEVICE DESIGNATION. 4189 02:41:55,614 --> 02:41:58,951 ALSO I WANT TO ACKNOWLEDGE KATIE 4190 02:41:58,951 --> 02:42:00,452 SALE AND JEN FRENCH, THE TWO 4191 02:42:00,452 --> 02:42:02,120 PEOPLE WITHIN THE ORGANIZATION 4192 02:42:02,120 --> 02:42:03,622 WHO HAVE REALLY DONE A LOT TO 4193 02:42:03,622 --> 02:42:05,324 SHEPHERD THIS AND WILL BE 4194 02:42:05,324 --> 02:42:07,059 CARRYING THE PROJECT FORWARD 4195 02:42:07,059 --> 02:42:10,128 EVEN AFTER THE END OF THE 4196 02:42:10,128 --> 02:42:10,629 FUNDING. 4197 02:42:10,629 --> 02:42:13,098 THE QUESTION, HOW ARE THE WAYS 4198 02:42:13,098 --> 02:42:16,034 THAT YOU CAN PRIORITIZE 4199 02:42:16,034 --> 02:42:16,301 REQUESTS? 4200 02:42:16,301 --> 02:42:19,605 SO I THINK WHEN IT COMES TO 4201 02:42:19,605 --> 02:42:21,907 TRIAGING REQUESTS, THIS IS 4202 02:42:21,907 --> 02:42:24,042 SOMETHING THAT WAS EXPRESSED AS 4203 02:42:24,042 --> 02:42:25,744 AN UNMET NEED GIVEN CONSTRAINTS, 4204 02:42:25,744 --> 02:42:29,648 HOW DO WE EVEN TRIAGE THESE 4205 02:42:29,648 --> 02:42:29,948 REQUESTS? 4206 02:42:29,948 --> 02:42:34,987 SOME ANSWERS THAT WE HEARD THAT 4207 02:42:34,987 --> 02:42:35,821 WERE SHARED BETWEEN 4208 02:42:35,821 --> 02:42:37,556 ORGANIZATIONS IS VETTING THEM 4209 02:42:37,556 --> 02:42:41,326 FOR THINGS LIKE THERE'S SOME 4210 02:42:41,326 --> 02:42:42,361 ORGANIZATIONS THAT WON'T 4211 02:42:42,361 --> 02:42:44,830 ENTERTAIN ENGAGEMENT REQUESTS IS 4212 02:42:44,830 --> 02:42:48,333 THE PROJECT IS NOT IRB APPROVED, 4213 02:42:48,333 --> 02:42:50,702 A MARK OF THE LEVEL OF MATURITY 4214 02:42:50,702 --> 02:42:52,104 FOR CERTAIN KINDS OF RESEARCH 4215 02:42:52,104 --> 02:42:53,605 STUDIES. 4216 02:42:53,605 --> 02:42:54,840 FOR OTHERS, THERE MAY BE 4217 02:42:54,840 --> 02:42:56,475 OPPORTUNITIES TO ENGAGE IN A 4218 02:42:56,475 --> 02:43:00,112 MUCH, MUCH EARLIER LEVEL, RIGHT? 4219 02:43:00,112 --> 02:43:01,046 SO WHERE ORGANIZATIONS MIGHT 4220 02:43:01,046 --> 02:43:03,916 WANT TO GET TO KNOW PEOPLE, GET 4221 02:43:03,916 --> 02:43:05,450 TO KNOW STORIES, LEARN FROM THE 4222 02:43:05,450 --> 02:43:08,320 COMMUNITY WHAT IT IS THEY DON'T 4223 02:43:08,320 --> 02:43:10,889 KNOW YET, QUITE ASIDE FROM ANY 4224 02:43:10,889 --> 02:43:13,158 PARTICULAR TECHNOLOGY OR TRIAL 4225 02:43:13,158 --> 02:43:14,526 JUST YET. 4226 02:43:14,526 --> 02:43:17,829 SO I THINK THAT THE CRITERIA 4227 02:43:17,829 --> 02:43:19,932 MIGHT BE THE WAY YOU POSITION 4228 02:43:19,932 --> 02:43:23,435 YOURSELF AND WHETHER YOU'RE 4229 02:43:23,435 --> 02:43:24,636 INVITED AS AN ORGANIZATION, 4230 02:43:24,636 --> 02:43:26,071 WHERE YOU CAN PRIORITIZE WHERE 4231 02:43:26,071 --> 02:43:28,240 YOU'RE BEING ASKED TO FULLY 4232 02:43:28,240 --> 02:43:32,311 PARTICIPATE AS A PARTNER, AS 4233 02:43:32,311 --> 02:43:34,046 OPPOSED TO ENDORSE, GIVE INPUT, 4234 02:43:34,046 --> 02:43:36,081 THOSE MIGHT BE THINGS THAT YOU 4235 02:43:36,081 --> 02:43:38,850 CAN CONSIDER. 4236 02:43:38,850 --> 02:43:41,320 ANOTHER ONE IS HOW DOES THIS 4237 02:43:41,320 --> 02:43:42,654 REALLY RETURN VALUE TO US? 4238 02:43:42,654 --> 02:43:46,391 IN A LOT OF CASES, INCREASINGLY, 4239 02:43:46,391 --> 02:43:47,626 SOME ENGAGEMENT REQUESTS ARE 4240 02:43:47,626 --> 02:43:50,262 GOING TO INVOLVE DATA, PATIENT 4241 02:43:50,262 --> 02:43:51,596 DATA, ANOTHER QUESTION YOU'VE 4242 02:43:51,596 --> 02:43:52,397 HAD. 4243 02:43:52,397 --> 02:43:55,200 >> DON'T GO THERE PLEASE! 4244 02:43:55,200 --> 02:43:56,034 >> RIGHT? 4245 02:43:56,034 --> 02:44:02,007 AND SO, AS ORGANIZATIONS YOU 4246 02:44:02,007 --> 02:44:03,308 HAVE RESOURCES. 4247 02:44:03,308 --> 02:44:05,077 YOUR RELATIONSHIP, YOUR 4248 02:44:05,077 --> 02:44:07,612 FAMILIES, YOUR PEOPLE, AND THEIR 4249 02:44:07,612 --> 02:44:09,181 INFORMATION IS VALUABLE. 4250 02:44:09,181 --> 02:44:09,982 YOUR RELATIONSHIPS ARE VALUABLE 4251 02:44:09,982 --> 02:44:12,517 ON A HUMAN LEVEL. 4252 02:44:12,517 --> 02:44:15,053 AND ALSO THIS DATA IS VERY, VERY 4253 02:44:15,053 --> 02:44:18,757 VALUABLE FROM A MONETARY 4254 02:44:18,757 --> 02:44:19,524 STANDPOINT. 4255 02:44:19,524 --> 02:44:20,525 AND SO THINKING ABOUT REALLY 4256 02:44:20,525 --> 02:44:22,461 CONSIDERING THAT YOU HAVE MUCH 4257 02:44:22,461 --> 02:44:25,931 MORE TO PROVIDE THAN JUST 4258 02:44:25,931 --> 02:44:28,533 PERSPECTIVES AND STORIES, THAT 4259 02:44:28,533 --> 02:44:30,836 THE INPUT AND PERSPECTIVES THAT 4260 02:44:30,836 --> 02:44:33,805 YOU BRING ARE POTENTIALLY GOING 4261 02:44:33,805 --> 02:44:35,674 TO MULTIPLY THE VALUE OF 4262 02:44:35,674 --> 02:44:38,176 WHATEVER IT IS THAT THEY ARE 4263 02:44:38,176 --> 02:44:39,044 DOING. 4264 02:44:39,044 --> 02:44:40,645 POSTURING IN A WAY THAT 4265 02:44:40,645 --> 02:44:43,115 CONSIDERING, OKAY, ARE WE BEING 4266 02:44:43,115 --> 02:44:44,716 RESPECTED PARTNERS, ARE WE BEING 4267 02:44:44,716 --> 02:44:45,717 LISTENED TO, AND THERE ARE 4268 02:44:45,717 --> 02:44:47,419 THINGS CAN YOU DO TO ESTABLISH 4269 02:44:47,419 --> 02:44:48,487 THAT. 4270 02:44:48,487 --> 02:44:50,255 THERE ARE KINDS OF DOCUMENTS, 4271 02:44:50,255 --> 02:44:52,024 BRIEFINGS, MATERIALS THAT SOME 4272 02:44:52,024 --> 02:44:52,891 ORGANIZATIONS HAVE DEVELOPED, 4273 02:44:52,891 --> 02:44:55,260 SAY, WHEN THEY GET APPROACHED BY 4274 02:44:55,260 --> 02:44:56,461 PHARMA OR INDUSTRY, TO SAY THESE 4275 02:44:56,461 --> 02:44:59,264 ARE THE GROUND RULES FOR HOW WE 4276 02:44:59,264 --> 02:45:01,867 WORK, THEY LEARN THESE THINGS 4277 02:45:01,867 --> 02:45:04,102 THROUGH HARD LINES. 4278 02:45:04,102 --> 02:45:06,138 MISSTEPS, BEING, TO A CERTAIN 4279 02:45:06,138 --> 02:45:10,409 EXTENT, MISTREATED BY THEIR 4280 02:45:10,409 --> 02:45:10,842 ENGAGEMENT PARTNERS. 4281 02:45:10,842 --> 02:45:14,146 SO RESPECT, POSTURING FOR 4282 02:45:14,146 --> 02:45:15,981 PARTNERSHIP, AND LISTENING, AND 4283 02:45:15,981 --> 02:45:18,016 CONSIDERING WHETHER THERE IS A 4284 02:45:18,016 --> 02:45:19,418 RETURN OF VALUE THAT DOESN'T 4285 02:45:19,418 --> 02:45:22,621 JUST HAVE TO BE IN MONETARY 4286 02:45:22,621 --> 02:45:23,221 COMPENSATION THAT COULD BE IN 4287 02:45:23,221 --> 02:45:25,590 TERMS OF HOW ARE YOU GOING TO 4288 02:45:25,590 --> 02:45:28,860 USE OUR INFORMATION, HOW WILL 4289 02:45:28,860 --> 02:45:31,430 THE PRIORITIES THAT WE INFORM, 4290 02:45:31,430 --> 02:45:33,432 HOW CAN WE EITHER MAKE SURE THAT 4291 02:45:33,432 --> 02:45:36,902 BENEFIT GETS BACK TO OUR 4292 02:45:36,902 --> 02:45:42,274 MEMBERSHIP OR HOW CAN WE 4293 02:45:42,274 --> 02:45:43,241 CONTINUE TO ENGAGE SUSTAINABLY 4294 02:45:43,241 --> 02:45:48,447 OVER TIME. 4295 02:45:48,447 --> 02:45:49,815 >> THAT WAS FANTASTIC. 4296 02:45:49,815 --> 02:45:51,149 JOE, YOU HAVE SOMETHING TO SAY? 4297 02:45:51,149 --> 02:45:52,851 I WAS GOING TO COME TO YOU NEXT 4298 02:45:52,851 --> 02:46:00,759 TO TALK ABOUT VALUE. 4299 02:46:00,759 --> 02:46:01,793 >> WELL, BESIDES OVERWHELMINGLY 4300 02:46:01,793 --> 02:46:04,429 AGREEING, ONE OF THE MOST 4301 02:46:04,429 --> 02:46:06,965 IMPORTANT THINGS OF MY 4302 02:46:06,965 --> 02:46:08,400 EXPERIENCE IS TOO FAR AWAY. 4303 02:46:08,400 --> 02:46:10,202 ONE OF THE THINGS THAT DOES 4304 02:46:10,202 --> 02:46:11,903 CREATE ISSUES IS NOT HAVING 4305 02:46:11,903 --> 02:46:13,438 THOSE RULES OF ENGAGEMENT LAID 4306 02:46:13,438 --> 02:46:13,605 OUT. 4307 02:46:13,605 --> 02:46:15,874 IT'S ONE OF MY ONGOING LARGEST 4308 02:46:15,874 --> 02:46:18,110 CRITICISMS OF ANYONE THAT WANTS 4309 02:46:18,110 --> 02:46:20,112 TO DO PATIENT ENGAGEMENT BECAUSE 4310 02:46:20,112 --> 02:46:23,181 VERY EASY TO WRITE A LINE IN A 4311 02:46:23,181 --> 02:46:23,415 PROJECT. 4312 02:46:23,415 --> 02:46:24,516 WE'LL ENGAGE PATIENTS, OR PUT IT 4313 02:46:24,516 --> 02:46:26,051 IN LEGISLATION, DROP IT IN. 4314 02:46:26,051 --> 02:46:27,986 BUT WHAT DOES THAT MEAN? 4315 02:46:27,986 --> 02:46:30,622 I THINK IT'S ALSO HELPFUL NOT 4316 02:46:30,622 --> 02:46:33,091 ONLY TO THE PERSON, THE COMPANY 4317 02:46:33,091 --> 02:46:34,960 CREATING AND COMING TO YOU, BUT 4318 02:46:34,960 --> 02:46:36,895 AS AN ORGANIZATION TO THINK WHEN 4319 02:46:36,895 --> 02:46:38,730 I SAY PARTNERSHIP, WE WANT TO BE 4320 02:46:38,730 --> 02:46:40,632 ENGAGED, THAT MEANS A SEAT AT 4321 02:46:40,632 --> 02:46:44,202 THE TABLE, AGAIN BEING ON THE 4322 02:46:44,202 --> 02:46:46,004 LEADERSHIP COMMITTEE, ON A 4323 02:46:46,004 --> 02:46:47,372 STEERING COMMITTEE, THAT DOES 4324 02:46:47,372 --> 02:46:48,573 NOT MEAN ENDORSEMENT OR MAYBE 4325 02:46:48,573 --> 02:46:50,442 THERE'S A PATHWAY TO 4326 02:46:50,442 --> 02:46:51,042 ENDORSEMENT, THINKING THROUGH 4327 02:46:51,042 --> 02:46:52,210 WHAT THAT LOOKS LIKE. 4328 02:46:52,210 --> 02:46:53,512 THE OTHER PIECE THAT I WANT TO 4329 02:46:53,512 --> 02:46:56,581 BRING UP CAME UP IN THE FIRST 4330 02:46:56,581 --> 02:46:59,084 PANEL AROUND CONTINUOUS NATURE 4331 02:46:59,084 --> 02:47:01,219 OF ENGAGEMENT AND IMPORTANCE 4332 02:47:01,219 --> 02:47:02,087 THERE. 4333 02:47:02,087 --> 02:47:04,789 IN MY DREAM AND PERFECT WORLD OF 4334 02:47:04,789 --> 02:47:06,424 PATIENT ENGAGEMENT THAT HAPPENS 4335 02:47:06,424 --> 02:47:08,593 ALONG A CONTINUUM THERE'S A 4336 02:47:08,593 --> 02:47:10,162 LEVEL OF CONTINUOUS ENGAGEMENT 4337 02:47:10,162 --> 02:47:11,429 WHERE YOUR PARTNERS ARE NOT 4338 02:47:11,429 --> 02:47:13,131 DROPPING IN FOR A QUICK PROJECT. 4339 02:47:13,131 --> 02:47:14,666 YOU DON'T HEAR FROM THEM FOR SIX 4340 02:47:14,666 --> 02:47:20,372 YEARS AND THEY POP BACK UP AGAIN 4341 02:47:20,372 --> 02:47:20,539 . 4342 02:47:20,539 --> 02:47:22,674 YOU HAVE ONGOING, WHETHER IT'S A 4343 02:47:22,674 --> 02:47:23,208 FORMALIZED PROJECT OR 4344 02:47:23,208 --> 02:47:24,442 RELATIONSHIP THAT SPANS THE 4345 02:47:24,442 --> 02:47:27,179 DURATION BUT, AGAIN, CAN HELP 4346 02:47:27,179 --> 02:47:28,046 REDUCE THAT BURDEN VERSUS 4347 02:47:28,046 --> 02:47:29,080 SOMEONE COMING OUT OF THE BLUE 4348 02:47:29,080 --> 02:47:30,949 TO SAY WE'D LIKE TO PARTNER, 4349 02:47:30,949 --> 02:47:34,052 LAST TIME YOU HAD DIFFERENT 4350 02:47:34,052 --> 02:47:35,921 LEADERSHIP TEAM AND A NEW 4351 02:47:35,921 --> 02:47:38,423 ENTITY. 4352 02:47:38,423 --> 02:47:39,457 SO MAINTAINING THOSE 4353 02:47:39,457 --> 02:47:42,360 RELATIONSHIPS ON THE FUNDER 4354 02:47:42,360 --> 02:47:42,994 SIDE. 4355 02:47:42,994 --> 02:47:43,295 >> GREAT. 4356 02:47:43,295 --> 02:47:44,529 THANK YOU. 4357 02:47:44,529 --> 02:47:47,132 I'M GOING TO COME TO COURTNEY. 4358 02:47:47,132 --> 02:47:49,734 I THREW OUT A GLIB COMMENT ABOUT 4359 02:47:49,734 --> 02:47:50,735 INDUSTRY FUNDING, EVERYTHING 4360 02:47:50,735 --> 02:47:52,804 THAT FNIH DOES, WHICH IS NOT 4361 02:47:52,804 --> 02:47:53,138 TRUE. 4362 02:47:53,138 --> 02:47:59,644 LOTS OF OTHER SOURCES OF 4363 02:47:59,644 --> 02:48:00,579 PHILANTHROPY, CORRECTING THE 4364 02:48:00,579 --> 02:48:01,046 RECORD. 4365 02:48:01,046 --> 02:48:02,881 MAYBE YOU CAN TALK MORE ABOUT 4366 02:48:02,881 --> 02:48:04,082 THE VALUE THE PATIENT 4367 02:48:04,082 --> 02:48:05,517 COMMUNITIES ARE BRINGING TO YOUR 4368 02:48:05,517 --> 02:48:05,784 WORK. 4369 02:48:05,784 --> 02:48:08,153 >> I'LL ANSWER THE QUESTION THAT 4370 02:48:08,153 --> 02:48:10,522 YOU THREW OUT, MAYBE IN A MORE 4371 02:48:10,522 --> 02:48:13,592 GENERAL WAY THAN YOU WOULD HAVE 4372 02:48:13,592 --> 02:48:13,959 HOPED. 4373 02:48:13,959 --> 02:48:18,096 BUT THE COMMENT THAT RACHEL MADE 4374 02:48:18,096 --> 02:48:20,699 ABOUT SOME PATIENT GROUPS NOT 4375 02:48:20,699 --> 02:48:23,401 GETTING ENGAGED UNTIL THERE'S AN 4376 02:48:23,401 --> 02:48:24,970 IRB APPROVAL, THAT WOULD 4377 02:48:24,970 --> 02:48:27,005 ELIMINATE ABOUT 99% OF THE 4378 02:48:27,005 --> 02:48:31,610 PATIENT ENGAGEMENT THAT THE FNIH 4379 02:48:31,610 --> 02:48:35,614 DOES BECAUSE WHEN WE ARE 4380 02:48:35,614 --> 02:48:38,750 THINKING ABOUT CLINICAL TRIAL 4381 02:48:38,750 --> 02:48:40,852 DESIGN WE'RE TALKING TO THE 4382 02:48:40,852 --> 02:48:42,587 PATIENT GROUPS FOR, YOU KNOW, 4383 02:48:42,587 --> 02:48:44,189 CLINICAL ASSESSMENT, HOW MANY IS 4384 02:48:44,189 --> 02:48:46,691 TOO MANY, WHAT'S USEFUL, WHAT'S 4385 02:48:46,691 --> 02:48:48,159 NOT USEFUL. 4386 02:48:48,159 --> 02:48:48,693 LONG-TERM FOLLOW-UP. 4387 02:48:48,693 --> 02:48:50,862 SO, FOR EXAMPLE, RIGHT NOW WE 4388 02:48:50,862 --> 02:48:56,234 ARE IN THE PROCESS OF FINALIZING 4389 02:48:56,234 --> 02:48:59,437 THE DESIGN OF A LONGITUDINAL 4390 02:48:59,437 --> 02:48:59,838 OBSERVATIONAL AND 4391 02:48:59,838 --> 02:49:01,306 BIOMARKER-BASED STUDY FOR 4392 02:49:01,306 --> 02:49:03,441 DEPRESSION. 4393 02:49:03,441 --> 02:49:04,576 AND MENTAL HEALTH OBSERVATIONAL 4394 02:49:04,576 --> 02:49:08,046 AND CLINICAL TRIALS HAVE 4395 02:49:08,046 --> 02:49:09,748 NOTORIOUS CHALLENGES IN LONG 4396 02:49:09,748 --> 02:49:14,319 TERM RETENTION AND FOLLOW-UP. 4397 02:49:14,319 --> 02:49:15,320 HEARING FROM THE PATIENTS 4398 02:49:15,320 --> 02:49:17,656 THROUGH MENTAL HEALTH AMERICA 4399 02:49:17,656 --> 02:49:21,760 AND THROUGH NOMI ABOUT WAYS WE 4400 02:49:21,760 --> 02:49:26,631 CAN LEARN FROM THEIR EXPERIENCE 4401 02:49:26,631 --> 02:49:29,968 TO HELP OVERCOME OR BE AWARE OF 4402 02:49:29,968 --> 02:49:35,340 CHALLENGES AS WE DESIGNING THE 4403 02:49:35,340 --> 02:49:39,611 CLINICAL TRIAL. 4404 02:49:39,611 --> 02:49:40,178 USING DATA, CONSENTING, ALL 4405 02:49:40,178 --> 02:49:41,479 THINGS IN THE DESIGN PHASE 4406 02:49:41,479 --> 02:49:47,886 BEFORE WE GET TO AN IRB OR AN 4407 02:49:47,886 --> 02:49:49,321 FDA APPLICATION. 4408 02:49:49,321 --> 02:49:52,824 SO, I THINK THAT'S SOMETHING TO 4409 02:49:52,824 --> 02:49:53,091 CONSIDER. 4410 02:49:53,091 --> 02:49:54,459 OBVIOUSLY IF YOU ARE LUCKY 4411 02:49:54,459 --> 02:49:55,927 ENOUGH TO HAVE PEOPLE BEATING 4412 02:49:55,927 --> 02:49:58,797 DOWN YOUR DOOR FOR PATIENT 4413 02:49:58,797 --> 02:50:00,231 ENGAGEMENT, THEN THERE'S CERTAIN 4414 02:50:00,231 --> 02:50:01,733 CONSIDERATIONS THAT GO ALONG 4415 02:50:01,733 --> 02:50:03,268 WITH THAT VOLUME, BUT KNOW THAT 4416 02:50:03,268 --> 02:50:05,403 THERE ARE ORGANIZATIONS THAT 4417 02:50:05,403 --> 02:50:08,907 REALLY DO VALUE YOUR INPUT FROM 4418 02:50:08,907 --> 02:50:11,443 THE IDEATION AND MOVING FORWARD 4419 02:50:11,443 --> 02:50:13,278 FROM THAT. 4420 02:50:13,278 --> 02:50:14,913 >> THAT'S GREAT. 4421 02:50:14,913 --> 02:50:16,581 SHEENA, SORRY. 4422 02:50:16,581 --> 02:50:18,083 I WAS THINKING ABOUT -- MY 4423 02:50:18,083 --> 02:50:22,954 FRIEND SHAYNA IS OVER THERE. 4424 02:50:22,954 --> 02:50:24,456 YOU SAID YOU WANTED TO TALK MORE 4425 02:50:24,456 --> 02:50:26,324 ABOUT THE VALUE AND IMPACT OF 4426 02:50:26,324 --> 02:50:28,626 THE WORK YOU'VE BEEN DOING. 4427 02:50:28,626 --> 02:50:29,427 >> YES, ABSOLUTELY. 4428 02:50:29,427 --> 02:50:31,196 TO YOUR QUESTION, I HAVE TO 4429 02:50:31,196 --> 02:50:35,333 AGREE WITH THE OTHER RESPONSES 4430 02:50:35,333 --> 02:50:37,836 REGARDING PRIORITIZATION AND 4431 02:50:37,836 --> 02:50:38,703 ADDING DOES A PUBLIC/PRIVATE 4432 02:50:38,703 --> 02:50:40,705 PARTNERSHIP ALIGN WITH YOUR 4433 02:50:40,705 --> 02:50:41,773 MISSION, WITH YOUR ORGANIZATION, 4434 02:50:41,773 --> 02:50:42,974 DO YOU HAVE SHARED GOALS? 4435 02:50:42,974 --> 02:50:44,509 OR IS THIS SOMETHING OUTSIDE OF 4436 02:50:44,509 --> 02:50:46,177 YOUR REALM THAT YOU'RE ABOUT TO 4437 02:50:46,177 --> 02:50:47,512 DRIVE INTO? 4438 02:50:47,512 --> 02:50:48,980 IS THERE A COMMUNITY, A SPACE 4439 02:50:48,980 --> 02:50:50,281 WHERE YOU CAN BUILD TRUST WITH 4440 02:50:50,281 --> 02:50:51,516 WHOEVER IS LEADING THAT? 4441 02:50:51,516 --> 02:50:53,017 IT TAKES TIME TO BUILD THAT 4442 02:50:53,017 --> 02:50:53,451 TRUST. 4443 02:50:53,451 --> 02:50:56,554 ARE YOU GOING TO DEVELOP THE 4444 02:50:56,554 --> 02:50:58,556 RELATIONSHIPS WITH WHOEVER IS 4445 02:50:58,556 --> 02:51:00,592 LEADING THESE PUBLIC/PRIVATE 4446 02:51:00,592 --> 02:51:00,925 PARTNERSHIPS? 4447 02:51:00,925 --> 02:51:03,395 I JUST WANTED TO SAY THAT AND I 4448 02:51:03,395 --> 02:51:04,095 AGREE WITH CLEAR 4449 02:51:04,095 --> 02:51:05,029 RESPONSIBILITIES AND ROLES AND 4450 02:51:05,029 --> 02:51:07,332 COMMITMENT FROM THE BEGINNING SO 4451 02:51:07,332 --> 02:51:09,267 EVERYONE IS ON BOARD WITH WHAT'S 4452 02:51:09,267 --> 02:51:11,503 HAPPENING FROM BOTH SIDES. 4453 02:51:11,503 --> 02:51:14,038 I THINK THAT JUST APPROACHES 4454 02:51:14,038 --> 02:51:15,073 THESE WITH HUMILITY AND 4455 02:51:15,073 --> 02:51:17,475 UNDERSTANDING WE'RE LEARNING 4456 02:51:17,475 --> 02:51:20,712 ALONG THE WAY, WILL BE HELPFUL. 4457 02:51:20,712 --> 02:51:22,013 BROADER IMPACTS, I DID WANT TO 4458 02:51:22,013 --> 02:51:24,482 MENTION, THIS IS REALLY IN 4459 02:51:24,482 --> 02:51:25,550 RESPONSE TO DR. BLACKSTONE'S 4460 02:51:25,550 --> 02:51:27,752 POINT ABOUT HOW CAN WE MOVE FROM 4461 02:51:27,752 --> 02:51:32,023 BASIC SCIENCE TO CLINICAL 4462 02:51:32,023 --> 02:51:37,996 OPPORTUNITIES, AND ONE THING 4463 02:51:37,996 --> 02:51:39,097 THAT NEURONEXT IS GROUND THE 4464 02:51:39,097 --> 02:51:41,399 WORK AND HOW DO WE GET THERE, IN 4465 02:51:41,399 --> 02:51:43,468 MULTIPLE WAYS. 4466 02:51:43,468 --> 02:51:46,971 FOSTERING THAT SUPPORT OF 4467 02:51:46,971 --> 02:51:47,572 COMMUNITY AND BIDIRECTIONAL 4468 02:51:47,572 --> 02:51:49,808 COMMUNICATION, NOT JUST OUR TEAM 4469 02:51:49,808 --> 02:51:51,409 SPEAKING WITH THE MEMBERS BUT 4470 02:51:51,409 --> 02:51:52,644 OUR MEMBERS, THEY HAVE A SEAT AT 4471 02:51:52,644 --> 02:51:55,346 THE TABLE ANYTIME WE HAVE A 4472 02:51:55,346 --> 02:51:57,115 MEMBERSHIP MEETING, NOT ON THE 4473 02:51:57,115 --> 02:52:00,051 SIDELINES, THEY ARE AT THE TABLE 4474 02:52:00,051 --> 02:52:01,553 WITH MEMBERS TO ACTIVELY 4475 02:52:01,553 --> 02:52:04,055 CONTRIBUTE AND THEY HAVE AN 4476 02:52:04,055 --> 02:52:05,190 OPPORTUNITY FOR SMALLER GROUP 4477 02:52:05,190 --> 02:52:06,357 CONVERSATIONS WITH FORUM MEMBERS 4478 02:52:06,357 --> 02:52:08,660 FOR TOPICS WE'RE DEVELOPING AS 4479 02:52:08,660 --> 02:52:08,860 WELL. 4480 02:52:08,860 --> 02:52:15,867 I THINK ANOTHER SIDE IS ALSO 4481 02:52:15,867 --> 02:52:18,636 WORKING WITH WITH OUR MEMBERS 4482 02:52:18,636 --> 02:52:20,905 CREATING IMPACTS, WE GET IN OUR 4483 02:52:20,905 --> 02:52:23,241 SPACES AND GROUP AND THINK IDEAS 4484 02:52:23,241 --> 02:52:24,676 ARE WONDERFUL, YOU WALK OUT THE 4485 02:52:24,676 --> 02:52:26,511 DOOR, THEY ARE LIKE WHAT ARE YOU 4486 02:52:26,511 --> 02:52:32,183 TALKING ABOUT? 4487 02:52:32,183 --> 02:52:33,485 NO IDEA. 4488 02:52:33,485 --> 02:52:35,019 THEY GROUND OR WORK. 4489 02:52:35,019 --> 02:52:37,755 IT'S A CRITICAL POINT. 4490 02:52:37,755 --> 02:52:39,991 WE HAD A FULL SESSION AROUND 4491 02:52:39,991 --> 02:52:41,926 HELPING TO COMMUNICATE AND 4492 02:52:41,926 --> 02:52:43,061 DISSEMINATE COMPLEX SCIENTIFIC 4493 02:52:43,061 --> 02:52:44,529 FINDINGS IN PLAIN LANGUAGE. 4494 02:52:44,529 --> 02:52:46,264 COMMUNICATION IS KEY. 4495 02:52:46,264 --> 02:52:47,765 IT'S CHALLENGING FROM A 4496 02:52:47,765 --> 02:52:48,833 SCIENTIFIC STANDPOINT. 4497 02:52:48,833 --> 02:52:52,170 HOW DO WE GET THAT MESSAGING OUT 4498 02:52:52,170 --> 02:52:54,205 TO THE PUBLIC AS WELL AS 4499 02:52:54,205 --> 02:52:56,608 INDIVIDUALS LIVING WITH THE 4500 02:52:56,608 --> 02:52:59,377 DISORDERS WE'RE STUDYING? 4501 02:52:59,377 --> 02:53:03,581 I THINK A BIG PART IS EVEN THE 4502 02:53:03,581 --> 02:53:06,150 TITLES OF CONSENSUS REPORTS, OF 4503 02:53:06,150 --> 02:53:07,919 OUR WORKSHOPS, DO YOU EVEN 4504 02:53:07,919 --> 02:53:09,220 UNDERSTAND WHAT WE'RE ADDRESSING 4505 02:53:09,220 --> 02:53:11,155 IN THIS MEETING? 4506 02:53:11,155 --> 02:53:11,322 NO? 4507 02:53:11,322 --> 02:53:13,458 OKAY, LET'S REVISE AND SHORTEN, 4508 02:53:13,458 --> 02:53:15,193 MAKE IT CRISPR. 4509 02:53:15,193 --> 02:53:17,362 THAT'S A REALLY CRITICAL POINT 4510 02:53:17,362 --> 02:53:18,429 THAT AS A COMMUNITY WE CAN 4511 02:53:18,429 --> 02:53:20,698 CONTINUE TO DO BETTER. 4512 02:53:20,698 --> 02:53:21,799 LASTLY LIKE HOW WE CONDUCT NOT 4513 02:53:21,799 --> 02:53:24,536 ONLY THE WORK OF OUR FORUM BUT 4514 02:53:24,536 --> 02:53:25,737 ACROSS THE ACADEMIES. 4515 02:53:25,737 --> 02:53:28,806 ONE MEMBER, J.R. RIZZO, 4516 02:53:28,806 --> 02:53:31,576 PROFESSOR AT NYU, HE DID HELP US 4517 02:53:31,576 --> 02:53:32,243 REVAMP ACCESSIBILITY PRODUCTS 4518 02:53:32,243 --> 02:53:33,845 AND HOW WE'RE THINKING ABOUT HOW 4519 02:53:33,845 --> 02:53:36,180 TO MAKE OUR MEETINGS MORE 4520 02:53:36,180 --> 02:53:37,348 ACCESSIBLE, WHETHER LANGUAGE, 4521 02:53:37,348 --> 02:53:38,383 WHETHER IT'S THE FORMAT AND 4522 02:53:38,383 --> 02:53:40,919 LAYOUT OF THE ROOM ITSELF SO 4523 02:53:40,919 --> 02:53:42,253 THAT WAS REALLY INFORMATIVE, 4524 02:53:42,253 --> 02:53:43,421 REALLY MOVING TOWARDS BROADER 4525 02:53:43,421 --> 02:53:47,559 IMPACTS THAT ARE HAPPENING NOW. 4526 02:53:47,559 --> 02:53:47,926 >> FANTASTIC. 4527 02:53:47,926 --> 02:53:48,893 ONE OF THE MOST IMPORTANT 4528 02:53:48,893 --> 02:53:52,764 POINTS, HAS TO BE MISSION 4529 02:53:52,764 --> 02:53:53,298 ALIGNED. 4530 02:53:53,298 --> 02:53:54,098 LET'S NOT FORGET THAT. 4531 02:53:54,098 --> 02:53:56,167 PEOPLE IN THIS ROOM DON'T HAVE 4532 02:53:56,167 --> 02:54:02,206 TIME OR MONEY TO WASTE, AND IT 4533 02:54:02,206 --> 02:54:03,274 CAN SEEM ENTICING IF INDUSTRY 4534 02:54:03,274 --> 02:54:04,842 SAYS THEY WANT TO GIVE YOU 4535 02:54:04,842 --> 02:54:07,078 MONEY, TO SAY YEAH, LET'S DO 4536 02:54:07,078 --> 02:54:09,447 THAT, DON'T BE AFRAID TO ASK FOR 4537 02:54:09,447 --> 02:54:11,783 THINGS IN RETURN, WHETHER THAT 4538 02:54:11,783 --> 02:54:14,852 IS IN FACT MONEY OR WHETHER IT'S 4539 02:54:14,852 --> 02:54:19,624 RETURN OF INFORMATION, RETURN OF 4540 02:54:19,624 --> 02:54:22,527 DATA, RETURN OF OTHER ASPECTS OF 4541 02:54:22,527 --> 02:54:24,128 THE RESEARCH PROCESS. 4542 02:54:24,128 --> 02:54:27,799 I DID WANT TO ASK, I WAS SO 4543 02:54:27,799 --> 02:54:31,135 INTERESTED THAT THE PREVIOUSLY 4544 02:54:31,135 --> 02:54:32,070 PANEL TALKED ABOUT COLLABORATION 4545 02:54:32,070 --> 02:54:35,573 THAN THE STATE OF THE SCIENCE, 4546 02:54:35,573 --> 02:54:37,742 THE STATE OF THE SCIENCE IS 4547 02:54:37,742 --> 02:54:40,979 AMAZING, SO MUCH GREAT SCIENCE, 4548 02:54:40,979 --> 02:54:42,880 AND AS YOU ARTICULATED WHERE WE 4549 02:54:42,880 --> 02:54:44,949 NEED HELP IS GETTING THE 4550 02:54:44,949 --> 02:54:45,917 SCIENCE, YOU KNOW, THROUGH THE 4551 02:54:45,917 --> 02:54:47,518 STAGE GATES AND INTO THE HANDS 4552 02:54:47,518 --> 02:54:51,723 OF PATIENTS AND PAID FOR. 4553 02:54:51,723 --> 02:54:55,059 BUT DO FOLKS FEEL LIKE THERE ARE 4554 02:54:55,059 --> 02:54:56,728 AREAS OF PARTICULAR OPPORTUNITY 4555 02:54:56,728 --> 02:55:01,265 IN NEUROSCIENCE RIGHT NOW WHERE 4556 02:55:01,265 --> 02:55:04,535 PARTICULARLY PEOPLE WORKING 4557 02:55:04,535 --> 02:55:05,803 ACROSS CONDITIONS MIGHT HAVE 4558 02:55:05,803 --> 02:55:07,472 OPPORTUNITY TO PARTNER AND 4559 02:55:07,472 --> 02:55:15,013 COLLABORATE, AND MAYBE I'LL 4560 02:55:15,013 --> 02:55:21,919 START WITH COURTNEY ACTUALLY. 4561 02:55:21,919 --> 02:55:23,788 >> YEAH, SO I TALKED A LITTLE 4562 02:55:23,788 --> 02:55:25,256 BIT ABOUT OUR ACCELERATED 4563 02:55:25,256 --> 02:55:28,159 MEDICINES PARTNERSHIP PROGRAM. 4564 02:55:28,159 --> 02:55:30,395 I HAD ACTUALLY JUST PULLED 4565 02:55:30,395 --> 02:55:31,829 PARTICIPANT NUMBERS FOR ANOTHER 4566 02:55:31,829 --> 02:55:33,131 PRESENTATION LAST WEEK AND THERE 4567 02:55:33,131 --> 02:55:35,967 ARE MORE PATIENT GROUPS INVOLVED 4568 02:55:35,967 --> 02:55:37,902 ACROSS THE 12 PROJECTS OF THAT 4569 02:55:37,902 --> 02:55:42,206 PROGRAM NOW THAN THERE ARE 4570 02:55:42,206 --> 02:55:42,473 INDUSTRY. 4571 02:55:42,473 --> 02:55:46,377 I THINK IT'S 42 INDUSTRY 4572 02:55:46,377 --> 02:55:48,646 PARTICIPANTS, AND 46 NON-PROFIT 4573 02:55:48,646 --> 02:55:49,247 ORGANIZATIONS. 4574 02:55:49,247 --> 02:55:50,948 SO THAT IS A SPACE THAT'S 4575 02:55:50,948 --> 02:55:54,952 CONTINUING TO GROW FOR US. 4576 02:55:54,952 --> 02:55:56,721 WE LAUNCHED TWO AMPs IN 4577 02:55:56,721 --> 02:56:00,692 NEUROSCIENCE LAST YEAR, ONE IS A 4578 02:56:00,692 --> 02:56:04,362 FOLLOW-ON EFFORT FROM OUR 4579 02:56:04,362 --> 02:56:07,165 PARKINSON'S DISEASE, SO 4580 02:56:07,165 --> 02:56:08,566 INCLUDING CONTINUING THE WORK OF 4581 02:56:08,566 --> 02:56:09,267 PARKINSON'S DISEASE AND OTHER 4582 02:56:09,267 --> 02:56:11,469 DISORDERS, AS WELL AS AMP AND 4583 02:56:11,469 --> 02:56:15,073 ALS WHICH WE GOT FROM IDEATION 4584 02:56:15,073 --> 02:56:17,475 TO EXECUTION IN RECORD TIME, YOU 4585 02:56:17,475 --> 02:56:18,176 KNOW, WITH THE PATIENT 4586 02:56:18,176 --> 02:56:19,644 COMMUNITIES IN MIND WHO DON'T 4587 02:56:19,644 --> 02:56:21,379 HAVE TIME TO WAIT FOR, YOU KNOW, 4588 02:56:21,379 --> 02:56:22,947 YEARS AND YEARS FOR A 4589 02:56:22,947 --> 02:56:24,315 PARTNERSHIP TO DEVELOP. 4590 02:56:24,315 --> 02:56:29,454 WE ALSO HAVE A PRETTY ROBUST 4591 02:56:29,454 --> 02:56:30,888 NEUROSCIENCE PORTFOLIO WITHIN 4592 02:56:30,888 --> 02:56:32,090 OUR BIOMARKERS CONSORTIUM. 4593 02:56:32,090 --> 02:56:38,296 SO WE HAVE REGULAR IDEATION 4594 02:56:38,296 --> 02:56:39,697 MEETINGS, HELPING TO IDENTIFY, 4595 02:56:39,697 --> 02:56:41,466 YOU KNOW, BIOMARKERS THAT THE 4596 02:56:41,466 --> 02:56:44,235 FIELD NEEDS TO MOVE THERAPEUTICS 4597 02:56:44,235 --> 02:56:47,004 FORWARD, AND PATIENT GROUPS AND 4598 02:56:47,004 --> 02:56:47,572 NON-PROFIT ORGANIZATIONS ARE 4599 02:56:47,572 --> 02:56:51,109 FREQUENTLY INVOLVED IN THOSE AS 4600 02:56:51,109 --> 02:56:51,342 WELL. 4601 02:56:51,342 --> 02:56:52,543 DEPRESSION INITIATIVE IS A BOARD 4602 02:56:52,543 --> 02:56:56,948 MEMBER, A NEW SPACE FOR US, OF 4603 02:56:56,948 --> 02:56:58,349 BUILDING SOMETHING OUTSIDE OF 4604 02:56:58,349 --> 02:57:02,453 ONE OF THE EXISTING GOVERNANCE 4605 02:57:02,453 --> 02:57:02,887 STRUCTURES. 4606 02:57:02,887 --> 02:57:05,723 AND WE HAVE NIMH SERVING IN AN 4607 02:57:05,723 --> 02:57:06,124 ADVISORY CAPACITY. 4608 02:57:06,124 --> 02:57:07,792 BUT AT THIS TIME THEY ARE NOT 4609 02:57:07,792 --> 02:57:10,895 PUTTING FUNDING INTO IT. 4610 02:57:10,895 --> 02:57:14,599 AND WE'VE HEARD FROM SOME PEOPLE 4611 02:57:14,599 --> 02:57:17,268 THAT DOESN'T COUNT AS A 4612 02:57:17,268 --> 02:57:18,903 PUBLIC/PRIVATE PARTNERSHIP IF 4613 02:57:18,903 --> 02:57:23,941 NIH -- WE OBVIOUSLY FEEL 4614 02:57:23,941 --> 02:57:25,576 DIFFERENTLY ABOUT THAT. 4615 02:57:25,576 --> 02:57:33,918 AND TAKE A BROAD PERSPECTIVE OF 4616 02:57:33,918 --> 02:57:34,819 PPP, NOT JUST DOLLARS. 4617 02:57:34,819 --> 02:57:37,822 WE'VE DONE A LITTLE BIT OF 4618 02:57:37,822 --> 02:57:40,491 EXPLORATION INTO WHAT A VENTURE 4619 02:57:40,491 --> 02:57:42,760 PHILANTHROPY FUND WOULD LOOK 4620 02:57:42,760 --> 02:57:43,795 LIKE, CERTAINLY NEUROSCIENCE IN 4621 02:57:43,795 --> 02:57:45,630 PARTICULAR, RARE DISEASES IN 4622 02:57:45,630 --> 02:57:47,298 NEUROSCIENCE ARE VERY 4623 02:57:47,298 --> 02:57:49,233 INTERESTING TO US IN THAT 4624 02:57:49,233 --> 02:57:51,135 RESPECT, AS WELL AS 4625 02:57:51,135 --> 02:57:51,836 UNDERRESOURCED AREAS. 4626 02:57:51,836 --> 02:57:52,870 >> THAT'S GREAT. 4627 02:57:52,870 --> 02:57:55,006 YOU'RE ON FIRM TERRITORY WITH 4628 02:57:55,006 --> 02:57:57,475 THE BROAD DEFINITION OF 4629 02:57:57,475 --> 02:57:58,409 PUBLIC/PRIVATE PARTNERSHIP, IT'S 4630 02:57:58,409 --> 02:58:03,915 AN IMPORTANT MESSAGE THE ASSETS 4631 02:58:03,915 --> 02:58:05,583 ARE NOT JUST FINANCIAL. 4632 02:58:05,583 --> 02:58:07,919 ANYBODY ELSE WANT TO SPECULATE 4633 02:58:07,919 --> 02:58:09,921 ABOUT AREAS OF OPPORTUNITY? 4634 02:58:09,921 --> 02:58:11,556 >> YEAH, THERE'S ONE THAT I 4635 02:58:11,556 --> 02:58:13,491 RECENTLY BECAME AWARE OF THAT 4636 02:58:13,491 --> 02:58:16,060 I'D LOVE TO SHARE, THE LIGHT 4637 02:58:16,060 --> 02:58:16,627 COLLECTIVE. 4638 02:58:16,627 --> 02:58:23,000 I THINK THE CATCH PHRASE IS NO 4639 02:58:23,000 --> 02:58:24,168 AGGREGATION WITHOUT 4640 02:58:24,168 --> 02:58:24,535 REPRESENTATION. 4641 02:58:24,535 --> 02:58:26,804 IF YOU'RE NOT AWARE OF HOW LIVED 4642 02:58:26,804 --> 02:58:37,248 EXPERIENCE DATA IS BECOMING MOD 4643 02:58:37,248 --> 02:58:37,415 -- 4644 02:58:37,415 --> 02:58:38,850 COMMODITIZED, HAVING -- 4645 02:58:38,850 --> 02:58:45,990 THERE'S -- I DIDN'T COUNT THEM, 4646 02:58:45,990 --> 02:58:47,325 MANY NON-PROFITS ARE PART OF 4647 02:58:47,325 --> 02:58:48,025 THAT. 4648 02:58:48,025 --> 02:58:49,427 THAT ORGANIZATION'S MISSION IS 4649 02:58:49,427 --> 02:58:53,698 TO PROTECT PATIENT DATA RIGHTS. 4650 02:58:53,698 --> 02:58:55,166 ALSO TO BROKER I THINK 4651 02:58:55,166 --> 02:58:57,802 COLLABORATIONS SO THAT THE 4652 02:58:57,802 --> 02:59:00,271 EXPERIENCE OF THESE DIFFERENT 4653 02:59:00,271 --> 02:59:03,007 INDIVIDUALS WHO MIGHT BELONG TO 4654 02:59:03,007 --> 02:59:06,844 AN ADVOCACY ORGANIZATION OR 4655 02:59:06,844 --> 02:59:08,980 PARTICULAR IDENTITY CAN BE 4656 02:59:08,980 --> 02:59:11,015 ENGAGED WITH AND CAN PARTNER AS 4657 02:59:11,015 --> 02:59:13,317 THESE OTHER TECHNOLOGIES ARE 4658 02:59:13,317 --> 02:59:15,453 DEVELOPED SO THEIR PERSPECTIVES 4659 02:59:15,453 --> 02:59:17,688 AND HOW DATA IS GETTING USED IS 4660 02:59:17,688 --> 02:59:18,489 BEING REPRESENTED. 4661 02:59:18,489 --> 02:59:19,891 I KNOW THERE'S DEFINITELY 4662 02:59:19,891 --> 02:59:21,559 PRODUCTS IN THE PARKINSON'S 4663 02:59:21,559 --> 02:59:21,893 DISEASE SPACE. 4664 02:59:21,893 --> 02:59:24,262 AS FAR AS I KNOW THE ONE THAT 4665 02:59:24,262 --> 02:59:26,430 I'M AWARE OF DOES A GREAT JOB 4666 02:59:26,430 --> 02:59:28,432 WITH DATA BUT I KNOW THEY HAVE 4667 02:59:28,432 --> 02:59:30,735 ALSO HAD A VERY LOT OF PATIENT 4668 02:59:30,735 --> 02:59:32,470 ENGAGEMENT AS THEY HAVE BEEN 4669 02:59:32,470 --> 02:59:34,872 DEVELOPING THEIR TECHNOLOGIES SO 4670 02:59:34,872 --> 02:59:37,842 THERE MAY BE MORE OPPORTUNITIES 4671 02:59:37,842 --> 02:59:39,010 EITHER JUST JOINING IN A 4672 02:59:39,010 --> 02:59:39,877 COLLABORATIVE AND BEING PART OF 4673 02:59:39,877 --> 02:59:44,348 THE WORK THEY ARE DOING OR 4674 02:59:44,348 --> 02:59:45,549 POSSIBLY BEING CONNECTED THROUGH 4675 02:59:45,549 --> 02:59:48,152 THEM WITH SOME OTHER PROJECTS. 4676 02:59:48,152 --> 02:59:56,727 THAT'S A VERY COOL INITIATIVE. 4677 02:59:56,727 --> 03:00:00,564 THE LIGHT COLLECTIVE, ANDREA 4678 03:00:00,564 --> 03:00:02,600 DOWNING IS THE PERSON BEHIND 4679 03:00:02,600 --> 03:00:03,267 THAT. 4680 03:00:03,267 --> 03:00:04,669 >> I'M PRIMING THE AUDIENCE. 4681 03:00:04,669 --> 03:00:06,804 TELL US ABOUT YOUR PARTNERSHIP 4682 03:00:06,804 --> 03:00:07,939 EXPERIENCES, GOOD, BAD, 4683 03:00:07,939 --> 03:00:08,839 INDIFFERENT. 4684 03:00:08,839 --> 03:00:10,608 I'LL START CALLING ON PEOPLE IF 4685 03:00:10,608 --> 03:00:11,309 YOU DON'T. 4686 03:00:11,309 --> 03:00:17,214 THEY ARE ASLEEP AT 2:10 IN THE 4687 03:00:17,214 --> 03:00:17,481 AFTERNOON. 4688 03:00:17,481 --> 03:00:19,583 SOMEBODY MENTIONED VENTURE 4689 03:00:19,583 --> 03:00:21,285 PHILANTHROPY TOPIC, WAS THAT 4690 03:00:21,285 --> 03:00:21,686 COURTNEY? 4691 03:00:21,686 --> 03:00:22,653 SHOULD WE GO THERE? 4692 03:00:22,653 --> 03:00:25,589 DO WE WANT TO TALK ABOUT VENTURE 4693 03:00:25,589 --> 03:00:27,558 PHILANTHROPY AND WHAT ITS 4694 03:00:27,558 --> 03:00:30,061 UTILITY IS AND WHO SHOULD THINK 4695 03:00:30,061 --> 03:00:34,565 ABOUT IT AND WHAT THEY SHOULD 4696 03:00:34,565 --> 03:00:35,700 EXPECT? 4697 03:00:35,700 --> 03:00:41,706 >> SO WE DID ABOUT -- JUST ABOUT 4698 03:00:41,706 --> 03:00:43,307 A SIX-MONTH EXPLORATION IN 4699 03:00:43,307 --> 03:00:46,644 CONJUNCTION WITH A TEAM FROM 4700 03:00:46,644 --> 03:00:48,079 McKENZIE, WHAT COULD A VENTURE 4701 03:00:48,079 --> 03:00:51,082 FRONT FUND LOOK LIKE FOR THE 4702 03:00:51,082 --> 03:00:52,516 FNIH, IS IT SOMETHING THAT WOULD 4703 03:00:52,516 --> 03:00:56,320 BE CLOSER TO THE VENTURE END OF 4704 03:00:56,320 --> 03:00:56,954 VENTURE PHILANTHROPY, SOMETHING 4705 03:00:56,954 --> 03:00:59,223 CLOSER TO THE PHILANTHROPY END 4706 03:00:59,223 --> 03:01:01,726 OF VENTURE PHILANTHROPY? 4707 03:01:01,726 --> 03:01:04,562 WE ALSO EXPLORED KIND OF WHERE 4708 03:01:04,562 --> 03:01:09,300 IN THE PIPELINE WOULD IT BE MOST 4709 03:01:09,300 --> 03:01:11,602 ADVANTAGEOUS FOR FNIH TO BE 4710 03:01:11,602 --> 03:01:13,004 ENGAGED, IS IT SOMETHING THAT'S 4711 03:01:13,004 --> 03:01:15,306 VERY EARLY ON HELPING TO SUPPORT 4712 03:01:15,306 --> 03:01:17,842 PROMISING BASIC SCIENCE THAT 4713 03:01:17,842 --> 03:01:19,076 MIGHT BECOME COMMERCIALIZABLE 4714 03:01:19,076 --> 03:01:20,277 DOWN THE ROAD, SOMETHING ON THE 4715 03:01:20,277 --> 03:01:22,246 TAIL END? 4716 03:01:22,246 --> 03:01:24,548 WE HAD CONVERSATION WAS SBIR 4717 03:01:24,548 --> 03:01:26,984 PROGRAM OFFICERS, SMALL BUSINESS 4718 03:01:26,984 --> 03:01:27,952 INNOVATION RESEARCH PROGRAM, AT 4719 03:01:27,952 --> 03:01:31,589 A NUMBER OF I.C.s IN THE NIH 4720 03:01:31,589 --> 03:01:33,124 INCLUDING NINDS, AND, YOU KNOW, 4721 03:01:33,124 --> 03:01:35,526 TO SEE IF THERE ARE 4722 03:01:35,526 --> 03:01:38,596 OPPORTUNITIES TO KIND OF HELP 4723 03:01:38,596 --> 03:01:40,631 BRIDGE COMPANIES OUT OF THE SBIR 4724 03:01:40,631 --> 03:01:42,033 PROGRAM WHO ARE MAKING REALLY 4725 03:01:42,033 --> 03:01:43,968 GREAT PROGRESS BUT MAYBE AREN'T 4726 03:01:43,968 --> 03:01:46,871 QUITE READY FOR MORE TRADITIONAL 4727 03:01:46,871 --> 03:01:47,338 INVESTMENT. 4728 03:01:47,338 --> 03:01:52,143 ONE OF THE CHALLENGES FOR US WAS 4729 03:01:52,143 --> 03:01:53,377 ARTICULATING WHAT DO WE BRING TO 4730 03:01:53,377 --> 03:01:55,046 THE TABLE? 4731 03:01:55,046 --> 03:01:57,882 WHAT IS UNIQUE ABOUT FNIH THAT 4732 03:01:57,882 --> 03:02:02,119 WOULD SET US APART FROM THE 4733 03:02:02,119 --> 03:02:03,387 OTHER THOUSAND LIFE SCIENCE 4734 03:02:03,387 --> 03:02:06,424 INVESTMENT AND VENTURE FUNDS. 4735 03:02:06,424 --> 03:02:07,591 AND HEARKENING BACK TO SOMETHING 4736 03:02:07,591 --> 03:02:12,063 THAT I SAID AT THE BEGINNING, 4737 03:02:12,063 --> 03:02:15,533 THE FACT THAT WE DON'T HAVE A 4738 03:02:15,533 --> 03:02:17,735 SPECIFIC DISEASE OR HEALTH AREA 4739 03:02:17,735 --> 03:02:19,570 OF FOCUS IS ACTUALLY QUITE A 4740 03:02:19,570 --> 03:02:24,075 CHALLENGE FOR US IN THE VENTURE 4741 03:02:24,075 --> 03:02:27,478 SPACE BECAUSE UNLIKE THE T1D 4742 03:02:27,478 --> 03:02:30,581 FOUNDATION THAT INVESTS IN 4743 03:02:30,581 --> 03:02:31,415 PROMPTING T1D TECHNOLOGIES OR I 4744 03:02:31,415 --> 03:02:34,518 THINK THERE'S ALSO ONE WITH THE 4745 03:02:34,518 --> 03:02:37,321 AMERICAN HEART ASSOCIATION AND 4746 03:02:37,321 --> 03:02:38,923 AMERICAN CANCER ASSOCIATION. 4747 03:02:38,923 --> 03:02:41,225 WE HAVE THE WHOLE RANGE OF HUMAN 4748 03:02:41,225 --> 03:02:42,493 HEALTH IN FRONT US, AND ALL OF 4749 03:02:42,493 --> 03:02:46,597 THE WORK THAT THE NIH IS DOING. 4750 03:02:46,597 --> 03:02:49,567 AND SO KIND OF THE -- WE DIDN'T 4751 03:02:49,567 --> 03:02:50,768 LAND ON MOVING FORWARD WITH 4752 03:02:50,768 --> 03:02:51,702 VENTURE PHILANTHROPY FUND YET, 4753 03:02:51,702 --> 03:02:54,905 BUT I THINK THE TWO THINGS WE 4754 03:02:54,905 --> 03:02:59,110 DID ALIGN ON, ONE IS THAT WE 4755 03:02:59,110 --> 03:03:04,014 WANTED TO LOOK FOR AREAS OF 4756 03:03:04,014 --> 03:03:06,750 HUMAN HEALTH THAT DON'T RECEIVE 4757 03:03:06,750 --> 03:03:08,786 AS MUCH TRADITIONAL VENTURE 4758 03:03:08,786 --> 03:03:12,790 FUNDING, SO RARE DISEASE SPACES, 4759 03:03:12,790 --> 03:03:13,991 PEDIATRICS, WOMEN'S HEALTH, 4760 03:03:13,991 --> 03:03:15,359 GLOBAL HEALTH, INFECTIOUS 4761 03:03:15,359 --> 03:03:17,228 DISEASE, SO FORTH, BECAUSE 4762 03:03:17,228 --> 03:03:20,397 THAT'S CLEARLY A WHITE SPACE 4763 03:03:20,397 --> 03:03:20,798 AVAILABLE. 4764 03:03:20,798 --> 03:03:23,634 THE OTHER IS WE HAVE A VALUE 4765 03:03:23,634 --> 03:03:26,570 PROPOSITION IN OUR CONNECTION TO 4766 03:03:26,570 --> 03:03:29,006 NIH THAT REALLY NO OTHER 4767 03:03:29,006 --> 03:03:30,474 ORGANIZATION CAN CLAIM IN THE 4768 03:03:30,474 --> 03:03:34,145 SAME WAY. 4769 03:03:34,145 --> 03:03:35,613 AND SO LOOKING FOR OPPORTUNITIES 4770 03:03:35,613 --> 03:03:37,815 TO EITHER WORK WITH NIH 4771 03:03:37,815 --> 03:03:41,018 TECHNOLOGIES, TECHNOLOGIES THAT 4772 03:03:41,018 --> 03:03:43,587 NIH HAS FUNDED, HAVING THAT 4773 03:03:43,587 --> 03:03:46,290 RELATIONSHIP BETWEEN THE NIH AND 4774 03:03:46,290 --> 03:03:47,591 FNIH IS SOMETHING THAT COULD 4775 03:03:47,591 --> 03:03:50,694 POTENTIALLY SET US APART IN AN 4776 03:03:50,694 --> 03:03:55,599 OVERSATURATED FIELD OF 4777 03:03:55,599 --> 03:03:57,368 INVESTMENT. 4778 03:03:57,368 --> 03:03:59,103 >> ABSOLUTELY FAIR. 4779 03:03:59,103 --> 03:04:00,804 DIVERSE DEAL FLOW. 4780 03:04:00,804 --> 03:04:02,673 WE'VE GOT A QUESTION. 4781 03:04:02,673 --> 03:04:03,541 >> IS THAT MY CUE? 4782 03:04:03,541 --> 03:04:07,144 >> I DIDN'T EVEN HAVE TO CALL ON 4783 03:04:07,144 --> 03:04:07,311 YOU. 4784 03:04:07,311 --> 03:04:11,115 >> ERIC COLE, DANNY WALKER 4785 03:04:11,115 --> 03:04:12,950 ALLIANCE, MANY OF US REPRESENT 4786 03:04:12,950 --> 03:04:14,652 GLOBAL CONSTITUENCIES OF 4787 03:04:14,652 --> 03:04:15,019 PATIENTS. 4788 03:04:15,019 --> 03:04:18,022 WE FIND OURSELVES IN THIS SPACE, 4789 03:04:18,022 --> 03:04:18,556 LIKE THE HYDROCEPHALUS 4790 03:04:18,556 --> 03:04:19,990 FOUNDATION AND BAND TOGETHER. 4791 03:04:19,990 --> 03:04:23,027 YOU JUST MENTIONED A COUPLE 4792 03:04:23,027 --> 03:04:24,528 THINGS, DR. SILVERTHORN. 4793 03:04:24,528 --> 03:04:26,230 AS RELATES TO VENTURE 4794 03:04:26,230 --> 03:04:27,231 PHILANTHROPY, ARE THERE 4795 03:04:27,231 --> 03:04:28,199 OPPORTUNITIES TO LOOK 4796 03:04:28,199 --> 03:04:29,400 INTERNATIONALLY FOR THAT? 4797 03:04:29,400 --> 03:04:31,535 AND PERHAPS COME TOGETHER IN A 4798 03:04:31,535 --> 03:04:32,670 PARTNERSHIP AND THEN PARTNER 4799 03:04:32,670 --> 03:04:36,540 WITH SOME I.C.s AT NIH THROUGH 4800 03:04:36,540 --> 03:04:39,577 CRADAs SO WE CAN BE ABLE TO 4801 03:04:39,577 --> 03:04:42,012 PERHAPS BRING A NEW APPROACH TO 4802 03:04:42,012 --> 03:04:43,113 FUNDING THINGS SPECIFICALLY FOR 4803 03:04:43,113 --> 03:04:46,150 RARE DISEASE? 4804 03:04:46,150 --> 03:04:48,085 >> I SAW AN ARTICLE LAST WEEK 4805 03:04:48,085 --> 03:04:49,853 ABOUT A HARVARD RESEARCHER THAT 4806 03:04:49,853 --> 03:04:51,288 GOT A MULTI-MILLION DOLLAR 4807 03:04:51,288 --> 03:04:53,891 INVESTMENT FROM A VENTURE FIRM 4808 03:04:53,891 --> 03:04:55,259 IN THE MIDDLE EAST. 4809 03:04:55,259 --> 03:04:57,928 WHICH IS A PRETTY NOVEL WAY TO 4810 03:04:57,928 --> 03:04:59,196 FUND YOUR RESEARCH. 4811 03:04:59,196 --> 03:05:01,632 AND I THINK THAT THERE ARE LOTS 4812 03:05:01,632 --> 03:05:02,800 OF OPPORTUNITIES THAT WILL 4813 03:05:02,800 --> 03:05:07,204 PROBABLY COME FORWARD IN THE 4814 03:05:07,204 --> 03:05:07,705 FUTURE. 4815 03:05:07,705 --> 03:05:09,273 THE INTERNATIONAL QUESTION FOR 4816 03:05:09,273 --> 03:05:11,242 US HAS BEEN CHALLENGING. 4817 03:05:11,242 --> 03:05:13,711 SO WITHIN THE BESPOKE GENE 4818 03:05:13,711 --> 03:05:14,845 THERAPY CONSORTIUM FOR EXAMPLE 4819 03:05:14,845 --> 03:05:17,348 BECAUSE OF THE DIFFERENCES IN 4820 03:05:17,348 --> 03:05:18,882 REGULATORY ENVIRONMENTS BETWEEN 4821 03:05:18,882 --> 03:05:21,619 THE U.S. AND OUTSIDE OF THE 4822 03:05:21,619 --> 03:05:23,821 U.S., WE HAD TO MAKE THE 4823 03:05:23,821 --> 03:05:26,957 DECISION TO FOCUS WITHIN U.S., 4824 03:05:26,957 --> 03:05:30,527 BUT WE ARE DOING WHATEVER WE CAN 4825 03:05:30,527 --> 03:05:32,363 TO HAVE COORDINATING 4826 03:05:32,363 --> 03:05:32,930 CONVERSATION WAS OTHER 4827 03:05:32,930 --> 03:05:34,732 REGULATORY BODIES. 4828 03:05:34,732 --> 03:05:37,668 BUT WE KNOW THAT RARE DISEASES, 4829 03:05:37,668 --> 03:05:39,503 DISEASES THAT ARE RARE IN THE 4830 03:05:39,503 --> 03:05:41,071 U.S., ARE NOT NECESSARILY RARE 4831 03:05:41,071 --> 03:05:42,106 PARTICULARLY FROM AN INVESTMENT 4832 03:05:42,106 --> 03:05:45,442 PERSPECTIVE WHEN YOU LOOK AT 4833 03:05:45,442 --> 03:05:45,876 GLOBAL POPULATIONS. 4834 03:05:45,876 --> 03:05:47,878 AND SO ANYTHING THAT CAN BE DONE 4835 03:05:47,878 --> 03:05:50,514 TO BRING TOGETHER SOME OF THOSE 4836 03:05:50,514 --> 03:05:51,949 INTERNATIONAL COMMUNITIES I 4837 03:05:51,949 --> 03:05:53,617 THINK REALLY DOES HELP MAKE IT 4838 03:05:53,617 --> 03:05:56,320 MORE FEASIBLE FOR THINGS TO MOVE 4839 03:05:56,320 --> 03:05:59,990 FORWARD INTO CLINICAL TRIALS AND 4840 03:05:59,990 --> 03:06:00,991 INTO PRODUCTS. 4841 03:06:00,991 --> 03:06:01,692 >> THAT'S GREAT. 4842 03:06:01,692 --> 03:06:04,128 THERE ARE A LOT OF THINGS THAT 4843 03:06:04,128 --> 03:06:06,764 FOUNDATIONS CAN FUND TOO, RIGHT? 4844 03:06:06,764 --> 03:06:08,132 OTHER THAN BASIC ACADEMIC 4845 03:06:08,132 --> 03:06:10,768 GRANTS, AND MAYBE SHORT OF 4846 03:06:10,768 --> 03:06:13,237 ACTUALLY MAKING EQUITY 4847 03:06:13,237 --> 03:06:16,273 INVESTMENTS IN COMPANIES AND DR. 4848 03:06:16,273 --> 03:06:17,107 LODISH CITED EARLIER CROs, 4849 03:06:17,107 --> 03:06:18,575 THERE ARE A NUMBER OF 4850 03:06:18,575 --> 03:06:19,810 FOUNDATIONS THAT WILL ACTIVELY 4851 03:06:19,810 --> 03:06:22,079 LOOK AT THEIR BASIC GRANTS 4852 03:06:22,079 --> 03:06:23,147 PORTFOLIO AND SAY THIS SEEMS 4853 03:06:23,147 --> 03:06:25,582 LIKE IT'S READY TO PULL THROUGH 4854 03:06:25,582 --> 03:06:28,185 INTO, YOU KNOW, INTO 4855 03:06:28,185 --> 03:06:29,420 PRE-CLINICAL WORK AND THERE'S A 4856 03:06:29,420 --> 03:06:31,155 DEARTH OF FUNDING AND INTEREST 4857 03:06:31,155 --> 03:06:33,357 IN DOING THAT WORK IN AN 4858 03:06:33,357 --> 03:06:34,058 ACADEMIC SETTING, COMPANIES 4859 03:06:34,058 --> 03:06:36,593 DON'T WANT TO SEE IT YET. 4860 03:06:36,593 --> 03:06:38,696 SO SOME FOUNDATIONS WILL BE LIKE 4861 03:06:38,696 --> 03:06:42,433 WE'RE GOING TO CONTRACT TO A CRO 4862 03:06:42,433 --> 03:06:43,734 TO DO INTERMEDIATE STEPS AND IT 4863 03:06:43,734 --> 03:06:48,072 CAN GO BACK TO THE ORIGINAL 4864 03:06:48,072 --> 03:06:53,544 INVESTIGATOR IF THEY HAVE THE 4865 03:06:53,544 --> 03:06:54,011 APPETITE. 4866 03:06:54,011 --> 03:06:55,245 MAYBE THEY CAN ENGINEER A 4867 03:06:55,245 --> 03:07:01,618 HANDOFF TO A BIOTECH THAT MIGHT 4868 03:07:01,618 --> 03:07:03,454 BE INTERESTED. 4869 03:07:03,454 --> 03:07:07,725 THERE ARE A LOT OF THINGS 4870 03:07:07,725 --> 03:07:09,960 FOUNDATIONS CAN DEPLOY FUNDS 4871 03:07:09,960 --> 03:07:11,362 AGAINST, EVERYBODY KNOWS SETTING 4872 03:07:11,362 --> 03:07:12,529 UP A REGISTRY, VALUABLE 4873 03:07:12,529 --> 03:07:15,833 SOURCINGS OF DATA FOR 4874 03:07:15,833 --> 03:07:16,166 STAKEHOLDERS. 4875 03:07:16,166 --> 03:07:18,302 I KNOW PEOPLE IN THE ROOM HAVE 4876 03:07:18,302 --> 03:07:22,840 AMAZING PARTNERSHIPS, AND I'M 4877 03:07:22,840 --> 03:07:24,575 GOING TO ASK SOME TO TALK ABOUT 4878 03:07:24,575 --> 03:07:24,875 THEM. 4879 03:07:24,875 --> 03:07:26,543 I'LL TELL YOU WHO I HAVE IN MIND 4880 03:07:26,543 --> 03:07:28,379 AND YOU CAN DECIDE IF YOU WANT 4881 03:07:28,379 --> 03:07:31,315 TO TALK ABOUT IT OR NOT. 4882 03:07:31,315 --> 03:07:33,384 I DID TELL RON BARTEK I MIGHT 4883 03:07:33,384 --> 03:07:34,752 ASK HIM TO TALK ABOUT THE ROLE 4884 03:07:34,752 --> 03:07:41,692 OF THE NATURAL HISTORY DATA YOU 4885 03:07:41,692 --> 03:07:48,465 COLLECTED IN THE SKY CLARIS 4886 03:07:48,465 --> 03:07:55,572 APPROVAL, IT'S A TWIST. 4887 03:07:55,572 --> 03:07:59,543 RICH BRENNAN, CMS. 4888 03:07:59,543 --> 03:08:03,747 SHAYNA, THE WORK AFTD DOES WITH 4889 03:08:03,747 --> 03:08:11,188 COMPANIES, BRINGING THEM 4890 03:08:11,188 --> 03:08:15,526 TOGETHER IN A COLLECTIVE. 4891 03:08:15,526 --> 03:08:16,927 >> I'VE BEEN VOLUNTOLD TO TALK. 4892 03:08:16,927 --> 03:08:17,828 IT'S TEMPTING. 4893 03:08:17,828 --> 03:08:26,036 I COULD GO ON FOR A COUPLE 4894 03:08:26,036 --> 03:08:28,305 HOURS, TO ANSWER KRISTIN'S 4895 03:08:28,305 --> 03:08:28,705 ENTREATY. 4896 03:08:28,705 --> 03:08:30,240 I'LL CUT IT SHORT AND FOCUS ON 4897 03:08:30,240 --> 03:08:31,975 THE TOPIC THAT YOU MENTIONED, 4898 03:08:31,975 --> 03:08:33,710 IMPORTANCE OF OUR NATURAL 4899 03:08:33,710 --> 03:08:35,245 HISTORY STUDY. 4900 03:08:35,245 --> 03:08:42,820 WE FOUND -- MY WIFE AND I ARE 4901 03:08:42,820 --> 03:08:46,723 CO-FOUNDERS, FOUNDED 26 YEARS 4902 03:08:46,723 --> 03:08:50,727 AGO, WE KNEW WE WANTED TO FOCUS 4903 03:08:50,727 --> 03:08:51,595 ON RESEARCH, THERE WERE OTHER 4904 03:08:51,595 --> 03:08:54,298 THINGS BUT WE WANTED TO MAKE OUR 4905 03:08:54,298 --> 03:08:56,900 MARK IN HELPING MOVE THE 4906 03:08:56,900 --> 03:08:58,402 RESEARCH FORWARD. 4907 03:08:58,402 --> 03:09:00,871 WE KNEW THAT TO DEVELOP THE KIND 4908 03:09:00,871 --> 03:09:02,272 OF PUBLIC/PRIVATE PARTNERSHIPS 4909 03:09:02,272 --> 03:09:04,174 THAT WE'RE ALL TALKING ABOUT 4910 03:09:04,174 --> 03:09:07,478 THAT WOULD INCLUDE OUR PATIENT 4911 03:09:07,478 --> 03:09:12,115 FAMILIES, INDUSTRY PARTNERS, OUR 4912 03:09:12,115 --> 03:09:13,016 SCIENTIFIC INVESTIGATORS, 4913 03:09:13,016 --> 03:09:15,085 GOVERNMENT PARTNERS LIKE THE NIH 4914 03:09:15,085 --> 03:09:18,222 AND FDA, AND OTHER PATIENT 4915 03:09:18,222 --> 03:09:21,658 ORGANIZATIONS ESPECIALLY THE 4916 03:09:21,658 --> 03:09:23,026 UMBRELLA GROUPS LIKE 4917 03:09:23,026 --> 03:09:23,861 FASTERCURES, EVERY LIGHT 4918 03:09:23,861 --> 03:09:29,933 FOUNDATION, WE'RE ALL IN THIS 4919 03:09:29,933 --> 03:09:30,934 TOGETHER. 4920 03:09:30,934 --> 03:09:31,401 SORRY. 4921 03:09:31,401 --> 03:09:33,070 THAT WE WOULD NEED TO DEVELOP 4922 03:09:33,070 --> 03:09:34,705 ASSETS THESE PARTNERS WOULD NEED 4923 03:09:34,705 --> 03:09:36,974 TO SUCCEED. 4924 03:09:36,974 --> 03:09:40,644 THE ASSETS THAT OUR INDUSTRY 4925 03:09:40,644 --> 03:09:41,912 PARTNERS ESPECIALLY WOULD NEED, 4926 03:09:41,912 --> 03:09:43,914 LIKE WE NEED TO CHARACTERIZE THE 4927 03:09:43,914 --> 03:09:47,084 DISEASE, TO FUND THE BASIC 4928 03:09:47,084 --> 03:09:48,752 SCIENCE PROJECTS THAT WOULD 4929 03:09:48,752 --> 03:09:50,287 CHARACTERIZE OUR DISEASE, THAT 4930 03:09:50,287 --> 03:09:51,955 WOULD GIVE THESE INDUSTRY 4931 03:09:51,955 --> 03:09:53,323 PARTNERS AN IDEA WHAT OUR 4932 03:09:53,323 --> 03:09:58,095 DISEASE IS, WHAT CAUSES IT. 4933 03:09:58,095 --> 03:09:59,696 WE WOULD NEED TRANSLATIONAL 4934 03:09:59,696 --> 03:10:01,798 SCIENCES, LIKE CELLS OF THE 4935 03:10:01,798 --> 03:10:04,368 ANIMALS, SO FORTH, THE 4936 03:10:04,368 --> 03:10:05,102 BIOMARKERS. 4937 03:10:05,102 --> 03:10:06,537 THIRD WE COULD NEED CLINICAL 4938 03:10:06,537 --> 03:10:09,673 ASSETS LIKE OUR NATURAL HISTORY 4939 03:10:09,673 --> 03:10:12,075 STUDY, PATIENT REGISTRY TO 4940 03:10:12,075 --> 03:10:14,177 RECRUIT CLINICAL TRIALS. 4941 03:10:14,177 --> 03:10:15,746 AND A CLINICAL NETWORK, ALL OF 4942 03:10:15,746 --> 03:10:19,416 WHICH WE'VE DEVELOPED OVER TIME. 4943 03:10:19,416 --> 03:10:23,387 TO COME TO THE POINT KRISTIN 4944 03:10:23,387 --> 03:10:27,224 ASKED ME ABOUT, THAT NATURAL 4945 03:10:27,224 --> 03:10:28,992 HISTORY STUDY, WON'T GO INTO 4946 03:10:28,992 --> 03:10:30,193 DETAILS HOW WE ACCIDENTALLY 4947 03:10:30,193 --> 03:10:34,364 STARTED IT, BUT IT WAS VERY 4948 03:10:34,364 --> 03:10:34,665 FORTUITOUS. 4949 03:10:34,665 --> 03:10:38,802 IT'S BEEN GOING ON FOR MORE THAN 4950 03:10:38,802 --> 03:10:39,603 20 YEARS. 4951 03:10:39,603 --> 03:10:45,542 AND SO WE COME TO 19 -- TO 2022, 4952 03:10:45,542 --> 03:10:48,712 AND WE HAVE A SMALL BIOTECH IN 4953 03:10:48,712 --> 03:10:50,047 AUSTIN, TEXAS, THAT'S GOT THIS 4954 03:10:50,047 --> 03:10:55,385 TRUCK -- DRUG WE HELPED THEM 4955 03:10:55,385 --> 03:10:57,487 WORK ON, THEY HAVE DONE A PHASE 4956 03:10:57,487 --> 03:11:01,191 2 CLINICAL TRIAL THAT SHOWED WE 4957 03:11:01,191 --> 03:11:03,060 THOUGHT THAT IT SLOWED 4958 03:11:03,060 --> 03:11:05,929 PROGRESSION OF OUR DISEASE, 4959 03:11:05,929 --> 03:11:07,197 THAT'S RELENTLESSLY PROGRESSING. 4960 03:11:07,197 --> 03:11:10,667 AND WE WENT WITH THEM TO THE 4961 03:11:10,667 --> 03:11:10,834 FDA. 4962 03:11:10,834 --> 03:11:13,470 FDA SAID THESE DATA ARE 4963 03:11:13,470 --> 03:11:17,874 INTERESTING BUT NOT SUFFICIENTLY 4964 03:11:17,874 --> 03:11:18,809 PERSUASIVE, DO ANOTHER CLINICAL 4965 03:11:18,809 --> 03:11:19,309 TRIAL. 4966 03:11:19,309 --> 03:11:20,978 WE USED UP MOST OF THE PATIENTS 4967 03:11:20,978 --> 03:11:23,280 THAT WOULD BE ELIGIBLE AND KNEW 4968 03:11:23,280 --> 03:11:23,614 WE COULDN'T. 4969 03:11:23,614 --> 03:11:27,584 WE WORKED INSTEAD WITH A 4970 03:11:27,584 --> 03:11:29,186 COMPANY, GAVE FULL ACCESS TO 4971 03:11:29,186 --> 03:11:31,221 NATURAL HISTORY DATABASE. 4972 03:11:31,221 --> 03:11:34,591 THEY CONSTRUCTED THREE NEW 4973 03:11:34,591 --> 03:11:37,494 DATASETS TO SUPPLEMENT THEIR NEW 4974 03:11:37,494 --> 03:11:37,894 DRUG APPLICATION. 4975 03:11:37,894 --> 03:11:42,599 ONE OF THEM WAS THE USE OF OUR 4976 03:11:42,599 --> 03:11:44,935 NATURAL HISTORY DATA AS AN 4977 03:11:44,935 --> 03:11:46,403 EXTERNAL COMPARATOR TO THE 4978 03:11:46,403 --> 03:11:47,304 CLINICAL TRIAL DATA, ESPECIALLY 4979 03:11:47,304 --> 03:11:49,473 IN THE OPEN LABEL EXTENSION FOR 4980 03:11:49,473 --> 03:11:53,243 3 YEARS. 4981 03:11:53,243 --> 03:11:54,544 THAT COMPARISON DEMONSTRATED 4982 03:11:54,544 --> 03:11:55,712 THAT THE CAREFULLY MATCHED 4983 03:11:55,712 --> 03:11:59,549 PATIENTS FROM OUR NATURAL 4984 03:11:59,549 --> 03:12:04,287 HISTORY STUDY TO THOSE 136 IN 4985 03:12:04,287 --> 03:12:05,822 OPEN LABEL EXTENSION, SO THE 4986 03:12:05,822 --> 03:12:07,991 ONES FROM NATURAL HISTORY 4987 03:12:07,991 --> 03:12:09,526 OBVIOUSLY NOT ON ANY DRUG, THERE 4988 03:12:09,526 --> 03:12:10,227 WASN'T ONE. 4989 03:12:10,227 --> 03:12:13,563 THE ONES IN THE OPEN LABEL 4990 03:12:13,563 --> 03:12:18,301 EXTENSION ALL ON DRUG ENJOYED 4991 03:12:18,301 --> 03:12:21,304 55% SLOWING IN PROGRESSION OVER 4992 03:12:21,304 --> 03:12:22,773 THE 3-YEAR PERIOD, WENT BACK TO 4993 03:12:22,773 --> 03:12:25,809 PHASE 2 CLINICAL TRIAL IT WOULD 4994 03:12:25,809 --> 03:12:29,646 BE 70% SLOWING OF PROGRESSION. 4995 03:12:29,646 --> 03:12:31,982 THAT CONVINCED THE FDA, SO ON 4996 03:12:31,982 --> 03:12:35,786 RARE DISEASE DAY OF 2023 THEY 4997 03:12:35,786 --> 03:12:42,859 ANNOUNCED THE FIRST APPROVAL FOR 4998 03:12:42,859 --> 03:12:43,393 ATAXIA. 4999 03:12:43,393 --> 03:12:46,363 NOW I WANT TO CELEBRATE THE 5000 03:12:46,363 --> 03:12:47,998 75th ANNIVERSARY OF NINDS BY 5001 03:12:47,998 --> 03:12:50,200 TELLING YOU A QUICK STORY. 5002 03:12:50,200 --> 03:12:54,771 OUR SON KEITH WAS DIAGNOSED 27 5003 03:12:54,771 --> 03:12:56,807 YEARS AGO, AGE 11. 5004 03:12:56,807 --> 03:13:01,278 MY WIFE RACHEL WAS WORKING FOR A 5005 03:13:01,278 --> 03:13:02,145 LOUISIANA CONGRESSMAN WHO WAS 5006 03:13:02,145 --> 03:13:04,381 ASKED BY ONE OF HIS COMMITTEE 5007 03:13:04,381 --> 03:13:07,718 MEMBERS TO GIVE THE KEYNOTE 5008 03:13:07,718 --> 03:13:15,258 SPEECH AT A GALA FOR A DIFFERENT 5009 03:13:15,258 --> 03:13:16,560 ATTACKSIA. 5010 03:13:16,560 --> 03:13:18,695 BILLY TURNS TO RACHEL, YOU KNOW 5011 03:13:18,695 --> 03:13:20,964 MORE, COULD YOU WRITE MY SPEECH? 5012 03:13:20,964 --> 03:13:22,599 RACHEL AND I WROTE HIS 5013 03:13:22,599 --> 03:13:24,568 PRESENTATION FOR THE KEYNOTE. 5014 03:13:24,568 --> 03:13:26,703 RACHEL GOES TO THE GALA. 5015 03:13:26,703 --> 03:13:30,974 SITS AT THE HEAD TABLE WITH THE 5016 03:13:30,974 --> 03:13:32,242 CONGRESSMAN BILLY TOZAN, BILLY 5017 03:13:32,242 --> 03:13:34,010 GIVES A SPEECH, PEOPLE START 5018 03:13:34,010 --> 03:13:34,911 BREAKING UP. 5019 03:13:34,911 --> 03:13:37,114 A WOMAN ALSO AT THE HEAD TABLE 5020 03:13:37,114 --> 03:13:39,449 THAT WE DIDN'T KNOW COMES AROUND 5021 03:13:39,449 --> 03:13:41,451 TO RACHEL AND SAYS, SO WHY ARE 5022 03:13:41,451 --> 03:13:41,918 YOU HERE? 5023 03:13:41,918 --> 03:13:43,053 I WROTE THE CONGRESSMAN'S 5024 03:13:43,053 --> 03:13:43,587 SPEECH. 5025 03:13:43,587 --> 03:13:43,887 WHY SO? 5026 03:13:43,887 --> 03:13:48,525 MY SON HAS A DIFFERENT ATAXIA, 5027 03:13:48,525 --> 03:13:52,395 WHICH ONE? 5028 03:13:52,395 --> 03:13:55,332 SHE SAYS, I'M THE PROGRAM 5029 03:13:55,332 --> 03:13:57,834 OFFICER AT NINDS, FOR 5030 03:13:57,834 --> 03:13:58,468 NEURODEGENERATIVE DISEASES, I'D 5031 03:13:58,468 --> 03:13:59,770 LIKE TO INVITE YOU AND YOUR 5032 03:13:59,770 --> 03:14:03,974 HUSBAND TO COME OUT AND HAVE 5033 03:14:03,974 --> 03:14:05,809 BREAKFAST WITH ME THURSDAY. 5034 03:14:05,809 --> 03:14:06,843 AT NINDS. 5035 03:14:06,843 --> 03:14:08,545 WE DID THAT. 5036 03:14:08,545 --> 03:14:09,813 SHE SAID AFTER BREAKFAST I'M 5037 03:14:09,813 --> 03:14:12,082 GOING TO TAKE YOU TO THE 5038 03:14:12,082 --> 03:14:13,416 NATIONAL ADVISORY COUNCIL 5039 03:14:13,416 --> 03:14:14,384 MEETING. 5040 03:14:14,384 --> 03:14:15,585 THIS IS A PLUG. 5041 03:14:15,585 --> 03:14:19,556 HERE WE ARE AT THE NON-PROFIT 5042 03:14:19,556 --> 03:14:19,756 FORUM. 5043 03:14:19,756 --> 03:14:20,724 A WONDERFUL FORUM THAT WALTER 5044 03:14:20,724 --> 03:14:22,559 SAYS WE'RE GOING TO EVEN DO 5045 03:14:22,559 --> 03:14:25,061 BETTER THIS YEAR THAN LAST YEAR. 5046 03:14:25,061 --> 03:14:26,396 HE'S ALWAYS RIGHT. 5047 03:14:26,396 --> 03:14:28,265 SO THE OTHER FORUM THAT I'M 5048 03:14:28,265 --> 03:14:31,234 GOING TO INVITE, IF YOU'RE NOT 5049 03:14:31,234 --> 03:14:34,905 ALREADY INVOLVED, IS THE 5050 03:14:34,905 --> 03:14:35,972 NATIONAL ADVISORY COUNCIL MEETS 5051 03:14:35,972 --> 03:14:38,675 THREE TIMES A YEAR, SO WE WENT 5052 03:14:38,675 --> 03:14:40,977 UP TO THAT MEETING, THAT 5053 03:14:40,977 --> 03:14:42,379 THURSDAY MORNING, AFTER 5054 03:14:42,379 --> 03:14:42,779 BREAKFAST. 5055 03:14:42,779 --> 03:14:45,615 WE GOT TO LEARN HOW THE NINDS 5056 03:14:45,615 --> 03:14:47,717 WORKS AND WHY. 5057 03:14:47,717 --> 03:14:49,953 AND WE GOT DEEPLY INVOLVED. 5058 03:14:49,953 --> 03:14:52,255 AND THE PROGRAM OFFICER CAME UP 5059 03:14:52,255 --> 03:14:55,792 TO ME AFTER THAT AND SAID, NOW I 5060 03:14:55,792 --> 03:14:59,162 WANT TO ASK YOU IF YOU CAN HELP 5061 03:14:59,162 --> 03:15:00,864 US DEVELOP TWO-WAY 5062 03:15:00,864 --> 03:15:02,999 COMMUNICATIONS BETWEEN OUR NINDS 5063 03:15:02,999 --> 03:15:04,434 PERSONNEL AND YOUR SCIENTISTS. 5064 03:15:04,434 --> 03:15:05,502 WE DON'T HAVE THAT. 5065 03:15:05,502 --> 03:15:07,037 WE WANT TO BE ABLE TO 5066 03:15:07,037 --> 03:15:07,637 COMMUNICATE WITH THEM. 5067 03:15:07,637 --> 03:15:10,540 WE WANT THEM TO BE ABLE TO 5068 03:15:10,540 --> 03:15:13,276 COMMUNICATE WITH US, WE THINK 5069 03:15:13,276 --> 03:15:14,778 YOU SHOULD DEVELOP AN 5070 03:15:14,778 --> 03:15:15,378 ORGANIZATION. 5071 03:15:15,378 --> 03:15:16,880 WE HAD ALREADY DECIDED TO 5072 03:15:16,880 --> 03:15:20,717 DEVELOP THE ORGANIZATION BUT WE 5073 03:15:20,717 --> 03:15:22,352 DIDN'T TELL JOVANA THAT. 5074 03:15:22,352 --> 03:15:23,987 FAST FORWARD A FEW MONTHS, I WAS 5075 03:15:23,987 --> 03:15:26,156 ASKED TO SERVE ON THE NATIONAL 5076 03:15:26,156 --> 03:15:27,424 ADVISORY COUNCIL, WHICH I WAS 5077 03:15:27,424 --> 03:15:28,825 ABLE TO DO FOR 4 YEARS. 5078 03:15:28,825 --> 03:15:31,061 IT'S A WONDERFUL FORUM. 5079 03:15:31,061 --> 03:15:32,395 YOU GET TO KNOW YOUR PROGRAM 5080 03:15:32,395 --> 03:15:33,296 OFFICERS VERY WELL. 5081 03:15:33,296 --> 03:15:34,798 YOU HAD THE OPPORTUNITY EARLIER 5082 03:15:34,798 --> 03:15:36,600 TODAY TO MEET WITH YOUR PROGRAM 5083 03:15:36,600 --> 03:15:37,334 OFFICERS. 5084 03:15:37,334 --> 03:15:39,703 I WOULD ENCOURAGE YOU TO 5085 03:15:39,703 --> 03:15:41,171 CONTINUE THAT CONVERSATION, AND 5086 03:15:41,171 --> 03:15:43,106 YOU CAN PARTICIPATE IN THE 5087 03:15:43,106 --> 03:15:46,309 NATIONAL ADVISORY COUNCIL 5088 03:15:46,309 --> 03:15:47,244 MEETINGS VIRTUALLY OR WE'RE BACK 5089 03:15:47,244 --> 03:15:49,446 TO DOING THEM IN PERSON, SO 5090 03:15:49,446 --> 03:15:52,015 RIGHT HERE IN THIS ROOM. 5091 03:15:52,015 --> 03:15:55,185 I WOULD ENCOURAGE YOU TO GET 5092 03:15:55,185 --> 03:15:56,419 INVOLVED WITH THESE WONDERFUL 5093 03:15:56,419 --> 03:15:57,754 PEOPLE AT NINDS. 5094 03:15:57,754 --> 03:15:58,021 THANK YOU. 5095 03:15:58,021 --> 03:16:08,565 >> THANK YOU FOR SHARING YOUR 5096 03:16:09,132 --> 03:16:09,266 STORY. 5097 03:16:09,266 --> 03:16:12,002 >> IT'S ALWAYS HARD TO FOLLOW 5098 03:16:12,002 --> 03:16:12,769 RON. 5099 03:16:12,769 --> 03:16:15,372 I'M RICH BRENNAN, ALS 5100 03:16:15,372 --> 03:16:16,006 ASSOCIATION. 5101 03:16:16,006 --> 03:16:17,741 THANK YOU FOR PUTTING THIS ON 5102 03:16:17,741 --> 03:16:19,409 FOR THE ORGANIZATIONS INVOLVED. 5103 03:16:19,409 --> 03:16:23,213 WE JUST FINISHED A TWO-YEAR 5104 03:16:23,213 --> 03:16:24,814 ENGAGEMENT WITH NATIONAL 5105 03:16:24,814 --> 03:16:26,716 ACADEMIES, ALS, SORT OF HOW TO 5106 03:16:26,716 --> 03:16:28,418 MAKE A DIFFERENCE IN THE 5107 03:16:28,418 --> 03:16:30,520 RESEARCH PORTFOLIO FOR ALS, HOW 5108 03:16:30,520 --> 03:16:31,988 TO MAKE A CLINICAL DIFFERENCE 5109 03:16:31,988 --> 03:16:34,557 FOR PEOPLE WITH ALS. 5110 03:16:34,557 --> 03:16:39,629 COURTNEY, WE'VE PARTICIPATED IN 5111 03:16:39,629 --> 03:16:42,098 AMP ALS, THERE'S A NUMBER OF 5112 03:16:42,098 --> 03:16:42,766 PUBLIC/PRIVATE PARTNERSHIPS IN 5113 03:16:42,766 --> 03:16:48,004 THE ALS SPACE CRITICAL TO OUR 5114 03:16:48,004 --> 03:16:48,204 WORK. 5115 03:16:48,204 --> 03:16:51,608 NINDS, AMAZING AS FAR AS THEIR 5116 03:16:51,608 --> 03:16:54,678 WORK FOR US IN ADVANCING THE 5117 03:16:54,678 --> 03:16:59,616 RESEARCH 5118 03:16:59,616 --> 03:17:00,050 RESEARCH BEHIND ALS. 5119 03:17:00,050 --> 03:17:01,084 THANK YOU, WALTER. 5120 03:17:01,084 --> 03:17:06,122 WITH FDA WE'RE PART OF THAT, THE 5121 03:17:06,122 --> 03:17:09,459 I GUESS CONSORTIUM WHERE YOU'RE 5122 03:17:09,459 --> 03:17:10,961 ALLOWED TO CONNECT WITH, YOU 5123 03:17:10,961 --> 03:17:14,798 KNOW, EARLY DEVELOPERS OF NEW 5124 03:17:14,798 --> 03:17:15,565 TECHNOLOGIES AND HAVE 5125 03:17:15,565 --> 03:17:18,868 CONVERSATIONS, TO MAKE THINGS 5126 03:17:18,868 --> 03:17:19,736 REGULATORY READY. 5127 03:17:19,736 --> 03:17:22,839 SO I HAVE, YOU KNOW, SPENT TIME, 5128 03:17:22,839 --> 03:17:25,575 ENERGY, BLOOD, SWEAT AND TEARS 5129 03:17:25,575 --> 03:17:27,544 IN ALL THESE PLACES, IN MY ROLE. 5130 03:17:27,544 --> 03:17:32,415 I WOULD SAY I WAS UP AT 5131 03:17:32,415 --> 03:17:37,587 BIOINTERNATIONAL CONFERENCE LAT 5132 03:17:37,587 --> 03:17:42,359 WEEK AND SPOKE ON A PANEL ABOUT 5133 03:17:42,359 --> 03:17:43,727 THE WHY OF RESEARCH, WHY 5134 03:17:43,727 --> 03:17:46,329 RESEARCH IS BECAUSE WE CAN USE 5135 03:17:46,329 --> 03:17:47,330 BIOMEDICAL SCIENCE TO MAKE A 5136 03:17:47,330 --> 03:17:48,865 DIFFERENCE IN THE LIVES OF 5137 03:17:48,865 --> 03:17:49,332 PEOPLE. 5138 03:17:49,332 --> 03:17:51,668 AND THAT THERE'S A TREMENDOUS 5139 03:17:51,668 --> 03:17:54,971 AMOUNT OF INVESTMENT AND 5140 03:17:54,971 --> 03:17:56,873 PARTNERSHIP BEHIND THAT. 5141 03:17:56,873 --> 03:18:01,277 IT'S CRITICAL, THE FACT THAT WE 5142 03:18:01,277 --> 03:18:01,878 IDENTIFY RESOURCES AND 5143 03:18:01,878 --> 03:18:03,246 PARTNERSHIPS, AND SO THANK YOU 5144 03:18:03,246 --> 03:18:04,614 FOR FOCUSING ON THIS. 5145 03:18:04,614 --> 03:18:07,650 MY QUESTION FOR THE PANEL IS 5146 03:18:07,650 --> 03:18:11,154 REALLY WHAT I'VE SEEN IS THAT IT 5147 03:18:11,154 --> 03:18:13,256 IS GREAT TO ENGAGE WITH NATIONAL 5148 03:18:13,256 --> 03:18:15,191 ACADEMIES, WITH THE FNIH, OR 5149 03:18:15,191 --> 03:18:18,094 WITH OTHERS, EVEN THE BRAIN 5150 03:18:18,094 --> 03:18:24,501 COALITION GOT US CONNECTED TO 5151 03:18:24,501 --> 03:18:26,836 THE PARTNERSHIP UP FDA, IT'S 5152 03:18:26,836 --> 03:18:27,837 MORE OF THE HANDOFFS. 5153 03:18:27,837 --> 03:18:32,809 HOW DO WE TAKE THE NATIONAL 5154 03:18:32,809 --> 03:18:34,210 ACADEMIES' WONDERFUL REPORT OVER 5155 03:18:34,210 --> 03:18:36,846 A 2-YEAR PERIOD THAT HAS A 5156 03:18:36,846 --> 03:18:38,148 NUMBER OF AWESOME WONDERFUL 5157 03:18:38,148 --> 03:18:40,583 THINGS THAT WE NEED TO BE ABLE 5158 03:18:40,583 --> 03:18:42,519 TO ACTIVATE AS A COMMUNITY, AND 5159 03:18:42,519 --> 03:18:44,087 MAKE THAT HAPPEN. 5160 03:18:44,087 --> 03:18:46,356 HOW DO WE GET THAT TO THE NEXT 5161 03:18:46,356 --> 03:18:46,656 STEPS? 5162 03:18:46,656 --> 03:18:47,757 THAT'S PART OF IT. 5163 03:18:47,757 --> 03:18:50,360 I ALSO WANT TO GET BACK TO THE 5164 03:18:50,360 --> 03:18:54,397 POINT WHERE I MADE BACK IN BIO, 5165 03:18:54,397 --> 03:18:56,833 I BELIEVED THAT WE WERE ON THE 5166 03:18:56,833 --> 03:19:00,503 PRECIPICE OF OPENING THE 5167 03:19:00,503 --> 03:19:03,406 FLOODGATES OF HAVING PATIENTS 5168 03:19:03,406 --> 03:19:06,109 INVOLVED IN ALL ASPECTS OF 5169 03:19:06,109 --> 03:19:10,613 RESEARCH, IN THE DEVELOPMENT OF 5170 03:19:10,613 --> 03:19:12,048 THESE NEW INNOVATIONS. 5171 03:19:12,048 --> 03:19:14,451 MY QUESTION IS WHAT ARE BEST 5172 03:19:14,451 --> 03:19:16,219 PRACTICES BEHIND THAT, HOW ARE 5173 03:19:16,219 --> 03:19:17,821 YOUR ORGANIZATIONS WORKING ON 5174 03:19:17,821 --> 03:19:18,288 THOSE THINGS? 5175 03:19:18,288 --> 03:19:19,756 >> I THINK THAT MIGHT BE MY 5176 03:19:19,756 --> 03:19:20,623 CLOSING QUESTION, WE'RE AT THE 5177 03:19:20,623 --> 03:19:21,791 END OF THE SESSION. 5178 03:19:21,791 --> 03:19:27,097 WE'LL DO A QUICK ROUND STARTING 5179 03:19:27,097 --> 03:19:31,868 WITH SHEENA, TO ADDRESS IN A 5180 03:19:31,868 --> 03:19:34,337 MINUTE, HOW DO YOU PULL THROUGH 5181 03:19:34,337 --> 03:19:36,906 ACROSS THE CONTINUUM OF PRODUCT 5182 03:19:36,906 --> 03:19:40,176 RESEARCH AND DEVELOPMENT, THESE 5183 03:19:40,176 --> 03:19:43,580 PRIORITIES OF PATIENTS, INSIGHTS 5184 03:19:43,580 --> 03:19:44,714 OF PATIENTS, ENGAGEMENT AND 5185 03:19:44,714 --> 03:19:49,552 INSIGHTS TO SHARE IN A MINUTE OR 5186 03:19:49,552 --> 03:19:50,220 LESS. 5187 03:19:50,220 --> 03:19:55,592 >> YEAH, THANK YOU FOR YOUR 5188 03:19:55,592 --> 03:19:57,961 SUPPORT. 5189 03:19:57,961 --> 03:20:01,164 WE CAN CREATE SPACES TO HELP 5190 03:20:01,164 --> 03:20:02,098 BRING IMPLEMENTERS TOGETHER, TO 5191 03:20:02,098 --> 03:20:05,101 COORDINATE, I WOULD LOVE TO CHAT 5192 03:20:05,101 --> 03:20:08,037 AFTER THIS. 5193 03:20:08,037 --> 03:20:09,239 TO THE QUESTION AROUND, YOU 5194 03:20:09,239 --> 03:20:11,407 KNOW, THOSE IN THIS ROOM LIKE I 5195 03:20:11,407 --> 03:20:14,377 THINK THAT WE THINK ABOUT THESE 5196 03:20:14,377 --> 03:20:14,978 PUBLIC/PRIVATE PARTNERSHIPS, I 5197 03:20:14,978 --> 03:20:19,149 KEEP GOING BACK TO THE EXAMPLE 5198 03:20:19,149 --> 03:20:20,483 OF PROJECTS IN COLLEGE, 5199 03:20:20,483 --> 03:20:22,218 SOMETIMES IT'S EASIER TO DO IT 5200 03:20:22,218 --> 03:20:23,920 ALONE BUT YOU'RE MISSING OUT ON 5201 03:20:23,920 --> 03:20:25,755 RESOURCES FROM OTHER PEOPLE TO 5202 03:20:25,755 --> 03:20:27,423 COME TOGETHER TO HELP 5203 03:20:27,423 --> 03:20:28,791 POTENTIALLY BRING FORTH 5204 03:20:28,791 --> 03:20:32,195 SOMETHING OF GREATER IMPACT, 5205 03:20:32,195 --> 03:20:32,896 LEVERAGING EACH OTHER'S 5206 03:20:32,896 --> 03:20:34,631 STRENGTHS, AREAS WE CAN IMPROVE 5207 03:20:34,631 --> 03:20:34,898 ON. 5208 03:20:34,898 --> 03:20:37,400 I THINK IN TERMS OF ADDRESSING 5209 03:20:37,400 --> 03:20:39,669 THIS, I THINK MOVING FORWARD, 5210 03:20:39,669 --> 03:20:42,906 IT'S REALLY ESSENTIAL THAT LIVED 5211 03:20:42,906 --> 03:20:44,440 EXPERIENCE REMAINS THAT CATALYST 5212 03:20:44,440 --> 03:20:46,009 TO HELP DRIVE REALLY URGENCY AND 5213 03:20:46,009 --> 03:20:48,178 RELEVANCY OF THE WORK THAT WE DO 5214 03:20:48,178 --> 03:20:49,546 BUT IT'S NOT YOU ALONE. 5215 03:20:49,546 --> 03:20:51,014 EVERYONE HAS TO BE ACCOUNTABLE 5216 03:20:51,014 --> 03:20:53,449 AND STEP UP TO DRIVE THESE 5217 03:20:53,449 --> 03:20:54,384 EFFORTS. 5218 03:20:54,384 --> 03:20:55,752 MY THING, MY ONE-MINUTE THING, 5219 03:20:55,752 --> 03:20:58,254 MAKING SURE WE'RE ALL PUTTING 5220 03:20:58,254 --> 03:21:01,191 OUR SELF FORWARD TO DRIVE 5221 03:21:01,191 --> 03:21:01,891 PUBLIC/PRIVATE PARTNERSHIPS. 5222 03:21:01,891 --> 03:21:03,326 THERE'S A LOT OF PRESSURE ON THE 5223 03:21:03,326 --> 03:21:05,528 PATIENT COMMUNITIES AND PATIENT 5224 03:21:05,528 --> 03:21:06,229 ORGANIZATIONS, PEOPLE WITH LIVED 5225 03:21:06,229 --> 03:21:09,599 EXPERIENCES, WE ALL CAN HAVE 5226 03:21:09,599 --> 03:21:13,703 OUR -- PUT OUR SELF FORWARD TO 5227 03:21:13,703 --> 03:21:15,205 DRIVE THE EFFORTS FORWARD. 5228 03:21:15,205 --> 03:21:18,107 >> FIRST THING THAT CAME TO MIND 5229 03:21:18,107 --> 03:21:22,946 WE NEED CHAMPIONS AND 5230 03:21:22,946 --> 03:21:23,279 COMMUNICATORS. 5231 03:21:23,279 --> 03:21:25,648 THE PUBLIC/PRIVATE PARTNERSHIPS 5232 03:21:25,648 --> 03:21:28,918 THAT FNIH BUILDS AND EXECUTES 5233 03:21:28,918 --> 03:21:30,954 DON'T DIRECTLY CREATE THE 5234 03:21:30,954 --> 03:21:32,655 THERAPIES OR THE TREATMENTS OR 5235 03:21:32,655 --> 03:21:33,823 THE DEVICES. 5236 03:21:33,823 --> 03:21:39,862 THEY ENABLE OTHERS TO DO THAT 5237 03:21:39,862 --> 03:21:41,664 WORK. 5238 03:21:41,664 --> 03:21:44,767 AND OUR PARTNERS, OUR PATIENT 5239 03:21:44,767 --> 03:21:46,736 COMMUNITIES, OUR ADVOCATES ARE 5240 03:21:46,736 --> 03:21:50,206 THE ONES WHO HELP US DISSEMINATE 5241 03:21:50,206 --> 03:21:52,008 THOSE RESOURCES AND MAKE SURE 5242 03:21:52,008 --> 03:21:55,044 THE WORK DONE IN THE PARTNERSHIP 5243 03:21:55,044 --> 03:21:57,013 ENDS UP HAVING VALUE TO THE 5244 03:21:57,013 --> 03:22:04,153 PATIENTS AND SO WE RELY ON OUR 5245 03:22:04,153 --> 03:22:09,292 OWN COMMUNICATIONS EFFORTS, WE 5246 03:22:09,292 --> 03:22:11,894 HAVE A GROUP TO TELL THE STORY 5247 03:22:11,894 --> 03:22:14,163 OF WHAT FNIH IS ACCOMPLISHING. 5248 03:22:14,163 --> 03:22:16,132 NIH IS A GREAT CHAMPION. 5249 03:22:16,132 --> 03:22:18,935 I WANT TO FOLLOW ON THE THREAD 5250 03:22:18,935 --> 03:22:21,204 OF KUDOS TO NINDS BECAUSE YOU 5251 03:22:21,204 --> 03:22:23,773 MIGHT NOT KNOW THAT IN ADDITION 5252 03:22:23,773 --> 03:22:25,341 TO PUBLIC/PRIVATE PARTNERSHIPS 5253 03:22:25,341 --> 03:22:26,309 THE FNIH HAS AN AWARDS PROGRAM 5254 03:22:26,309 --> 03:22:28,945 AND ONE OF THE AWARDS WE GIVE 5255 03:22:28,945 --> 03:22:30,947 OUT EVERY YEAR IS THE CHARLES 5256 03:22:30,947 --> 03:22:33,716 SANDERS PARTNERSHIP AWARD, AND 5257 03:22:33,716 --> 03:22:43,159 NINDS WAS LAST YEAR'S WINNER FOR 5258 03:22:43,159 --> 03:22:45,194 THEIR EXORBITANT SUPPORT, 5259 03:22:45,194 --> 03:22:51,801 ENGAGEMENT, AND CHAMPIONING OF 5260 03:22:51,801 --> 03:22:54,237 PUBLIC/PRIVATE PARTNERSHIPS. 5261 03:22:54,237 --> 03:22:58,308 >> SITTING IN THE RIGHT PLACE. 5262 03:22:58,308 --> 03:22:59,108 >> A FEW THOUGHTS. 5263 03:22:59,108 --> 03:23:00,843 I'VE ALWAYS BOUGHT INTO THE 5264 03:23:00,843 --> 03:23:02,979 CONCEPTS OF BUILDING THE BIGGEST 5265 03:23:02,979 --> 03:23:03,713 TENT. 5266 03:23:03,713 --> 03:23:05,348 SO AS YOU'RE PLANNING YOUR 5267 03:23:05,348 --> 03:23:07,016 INITIAL PHASE, THINKING ABOUT 5268 03:23:07,016 --> 03:23:08,618 THE CONTEXT OF A GROUP WE'VE 5269 03:23:08,618 --> 03:23:11,154 BEEN WORKING WITH, PART OF THAT 5270 03:23:11,154 --> 03:23:12,455 EARLY STAGE STRATEGY WAS, OKAY, 5271 03:23:12,455 --> 03:23:13,723 WHAT HAPPENS WHEN WE'RE 5272 03:23:13,723 --> 03:23:14,624 SUCCESSFUL HERE? 5273 03:23:14,624 --> 03:23:16,759 WHERE DO WE GO FROM HERE? 5274 03:23:16,759 --> 03:23:18,861 HOW WILL WE MOVE INTO WHAT IS 5275 03:23:18,861 --> 03:23:22,098 ULTIMATELY NOW PHASE 2 OF THIS 5276 03:23:22,098 --> 03:23:22,298 WORK? 5277 03:23:22,298 --> 03:23:23,599 AND, AGAIN, THAT'S BEEN 5278 03:23:23,599 --> 03:23:24,434 INCREDIBLY HELPFUL. 5279 03:23:24,434 --> 03:23:26,969 TO THE SECOND QUESTION, 5280 03:23:26,969 --> 03:23:27,704 CONTINUOUS ENGAGEMENT, AGAIN A 5281 03:23:27,704 --> 03:23:29,005 PASSION OF MINE. 5282 03:23:29,005 --> 03:23:30,239 WE HAVE METHODOLOGY. 5283 03:23:30,239 --> 03:23:31,941 WE HAVE THE ABILITY TO DO IT. 5284 03:23:31,941 --> 03:23:34,310 I THINK THE PIECE THAT WE'RE 5285 03:23:34,310 --> 03:23:38,014 STARTING TO SEE MORE ON THIS IS 5286 03:23:38,014 --> 03:23:40,917 SHOWING HOW PATIENT INPUT IS 5287 03:23:40,917 --> 03:23:41,918 CHANGING DECISIONS. 5288 03:23:41,918 --> 03:23:44,320 THAT GOES TO TALKING ABOUT THE 5289 03:23:44,320 --> 03:23:46,222 VENTURE CAPITAL SPACE MAKING AN 5290 03:23:46,222 --> 03:23:48,825 INVESTMENT DECISION BASED DOWN 5291 03:23:48,825 --> 03:23:58,000 MET NEEDS, BASE ON PATIENT 5292 03:23:58,000 --> 03:23:59,235 PERSPECTIVE, LOWEST-LAUNCH TRIAL 5293 03:23:59,235 --> 03:24:01,003 DESIGN, PATIENT JOURNEY, ALL 5294 03:24:01,003 --> 03:24:03,139 LEVELS OF RESEARCH. 5295 03:24:03,139 --> 03:24:05,341 WHEN YOU'RE MAKING CHANGES 5296 03:24:05,341 --> 03:24:06,209 BECAUSE YOU'VE GOT INPUT FROM 5297 03:24:06,209 --> 03:24:07,844 PATIENTS THAT NEEDS TO BE 5298 03:24:07,844 --> 03:24:08,144 DOCUMENTED. 5299 03:24:08,144 --> 03:24:10,179 IF YOU'RE UNABLE TO MAKE 5300 03:24:10,179 --> 03:24:12,248 CHANGES, TO DOCUMENT THAT. 5301 03:24:12,248 --> 03:24:13,216 WHAT CHANGED, WHAT DIDN'T, 5302 03:24:13,216 --> 03:24:14,650 CONTINUING TO SHOW THAT IMPACT 5303 03:24:14,650 --> 03:24:18,187 IN A WAY THAT DEMONSTRATES THAT 5304 03:24:18,187 --> 03:24:22,058 THINGS ARE CHANGING BECAUSE 5305 03:24:22,058 --> 03:24:23,292 PATIENTS HAVE A VOICE. 5306 03:24:23,292 --> 03:24:25,428 >> I'LL JUST ANSWER FROM A 5307 03:24:25,428 --> 03:24:26,162 COMPLEMENTARY PERSPECTIVE 5308 03:24:26,162 --> 03:24:27,897 ALTHOUGH I AGREE WITH ANSWERS 5309 03:24:27,897 --> 03:24:28,331 GIVEN. 5310 03:24:28,331 --> 03:24:32,001 I THINK WHEN IT COMES TO 5311 03:24:32,001 --> 03:24:35,304 CARRYING THINGS THROUGH AND 5312 03:24:35,304 --> 03:24:35,972 ACTUALIZING RECOMMENDATIONS, AND 5313 03:24:35,972 --> 03:24:38,941 OTHER THINGS, WHEN IT DOESN'T 5314 03:24:38,941 --> 03:24:40,376 HAPPEN THERE'S A CAPABILITY 5315 03:24:40,376 --> 03:24:43,946 THAT'S MISSING OR THERE'S A 5316 03:24:43,946 --> 03:24:44,847 VALUE MISALIGNMENT OR INCENTIVE 5317 03:24:44,847 --> 03:24:46,149 THAT'S NOT THERE. 5318 03:24:46,149 --> 03:24:48,785 SO I THINK WITH SOME OF THE 5319 03:24:48,785 --> 03:24:50,453 THINGS THAT ARE RECOMMENDED FOR 5320 03:24:50,453 --> 03:24:54,023 THEM TO HAPPEN THEY OFTEN 5321 03:24:54,023 --> 03:24:55,591 INVOLVE PLAYERS, MULTIPLE 5322 03:24:55,591 --> 03:24:58,060 PLAYERS, ACROSS A COMPLEX 5323 03:24:58,060 --> 03:24:58,327 ECOSYSTEM. 5324 03:24:58,327 --> 03:25:00,663 AND SO IDENTIFYING WHO HAS AN 5325 03:25:00,663 --> 03:25:04,267 INTEREST IN THAT TO BEGIN WITH, 5326 03:25:04,267 --> 03:25:09,071 AND CREATIVELY COLLABORATING TO 5327 03:25:09,071 --> 03:25:12,241 EITHER ALIGN INCENTIVES OR 5328 03:25:12,241 --> 03:25:14,577 CREATE SITUATIONS WHERE THERE 5329 03:25:14,577 --> 03:25:16,279 CAN BE VALUE, IT'S POSSIBLE 5330 03:25:16,279 --> 03:25:17,914 THERE'S NOT RESOURCES HERE TO 5331 03:25:17,914 --> 03:25:19,615 DEVELOP THAT CAPABILITY BUT 5332 03:25:19,615 --> 03:25:21,451 MAYBE THIS OTHER ORGANIZATION 5333 03:25:21,451 --> 03:25:25,321 CAN, OR THIS OTHER PART OF THE 5334 03:25:25,321 --> 03:25:27,356 SYSTEM ECOSYSTEM CAN. 5335 03:25:27,356 --> 03:25:29,459 WITH COLLABORATIVE SPACES, 5336 03:25:29,459 --> 03:25:30,059 EITHER INDUSTRY GROUPS, 5337 03:25:30,059 --> 03:25:33,129 COLLABORATIVE COMMUNITIES LIKE 5338 03:25:33,129 --> 03:25:35,598 WHAT FDA HAS, THESE -- AND ANY 5339 03:25:35,598 --> 03:25:37,667 KIND OF MICROCOSM OF THAT THAT'S 5340 03:25:37,667 --> 03:25:39,168 PROJECT BASED, I THINK THERE'S 5341 03:25:39,168 --> 03:25:41,170 ROOM TO GET CREATIVE WHEN WE'RE 5342 03:25:41,170 --> 03:25:45,007 WORKING TOGETHER, ESPECIALLY 5343 03:25:45,007 --> 03:25:47,109 WHEN WE HAVE MEMBERSHIPS ACROSS 5344 03:25:47,109 --> 03:25:48,678 SECTORS, MAKING SOME OF THOSE 5345 03:25:48,678 --> 03:25:50,246 THINGS HAPPEN, JUST A MATTER OF 5346 03:25:50,246 --> 03:25:53,382 WHY ISN'T IT HAPPENING. 5347 03:25:53,382 --> 03:25:53,749 >> FANTASTIC. 5348 03:25:53,749 --> 03:25:56,719 SO I THINK IN CLOSING I'LL 5349 03:25:56,719 --> 03:25:58,621 SAYs I HOPE FOLKS HAVE COME TO 5350 03:25:58,621 --> 03:25:59,322 UNDERSTAND PATIENT ORGANIZATIONS 5351 03:25:59,322 --> 03:26:00,756 HAVE A LOT OF ASSETS AND 5352 03:26:00,756 --> 03:26:03,125 CAPABILITIES THAT ARE CRITICAL 5353 03:26:03,125 --> 03:26:07,196 TO THIS PROCESS OF RESEARCH AND 5354 03:26:07,196 --> 03:26:08,531 PRODUCT DEVELOPMENT THAT THEY 5355 03:26:08,531 --> 03:26:09,398 ARE VITAL PARTNERS. 5356 03:26:09,398 --> 03:26:11,100 YOU DON'T HAVE TO HAVE A LOT OF 5357 03:26:11,100 --> 03:26:11,300 MONEY. 5358 03:26:11,300 --> 03:26:16,873 YOU DO HAVE TO HAVE A LOT OF 5359 03:26:16,873 --> 03:26:18,040 WILLPOWER AND SHOULDN'T BE 5360 03:26:18,040 --> 03:26:20,843 AFRAID TO ASK TO BE EQUAL 5361 03:26:20,843 --> 03:26:21,944 PARTNERS WITH OTHER STAKEHOLDERS 5362 03:26:21,944 --> 03:26:23,379 IN THIS PROCESS. 5363 03:26:23,379 --> 03:26:25,548 I'LL TURN THE BATON BACK OVER -- 5364 03:26:25,548 --> 03:26:28,784 JOIN ME IN THANKING THIS 5365 03:26:28,784 --> 03:26:34,490 FANTASTIC PANEL OF SPEAKERS. 5366 03:26:34,490 --> 03:26:35,658 >> THANK YOU. 5367 03:26:35,658 --> 03:26:37,026 WE'VE BEEN HEARING A LOT OF 5368 03:26:37,026 --> 03:26:38,561 WONDERFUL STORIES THROUGH THE 5369 03:26:38,561 --> 03:26:38,895 DAY. 5370 03:26:38,895 --> 03:26:45,301 OUR LAST SESSION IS FITTINGLY 5371 03:26:45,301 --> 03:26:46,102 STORYTELLING, WE HAVE A BRIEF 5372 03:26:46,102 --> 03:26:49,238 BREAK BUT PLEASE COME BACK IN 5373 03:26:49,238 --> 03:26:50,439 TEN MINUTES, 2:45. 5374 03:26:50,439 --> 03:26:52,441 SNACKS IN THE NEXT ROOM OVER. 5375 03:26:52,441 --> 03:26:54,076 LET'S ALL COME BACK AND HEAR 5376 03:26:54,076 --> 03:26:54,602 ABOUT THE POWER OF STORYTELLING. 5377 03:27:01,757 --> 03:27:05,528 >> WE HAVE A GREAT PANEL TO TALK 5378 03:27:05,528 --> 03:27:06,028 ABOUT STORYTELLING. 5379 03:27:06,028 --> 03:27:08,664 I'LL TURN IT OVER TO DR. 5380 03:27:08,664 --> 03:27:15,671 KOROSHETZ. 5381 03:27:15,671 --> 03:27:16,105 >> OKAY, FOLKS. 5382 03:27:16,105 --> 03:27:18,374 YEAH, WE'RE REALLY EXCITED ABOUT 5383 03:27:18,374 --> 03:27:22,378 OUR FINAL PANEL TO TAKE US HOME. 5384 03:27:22,378 --> 03:27:24,146 WE ALWAYS END THE NON-PROFIT 5385 03:27:24,146 --> 03:27:30,353 FORUM WITH STORIES FROM OUR 5386 03:27:30,353 --> 03:27:31,921 NON-PROFIT GROUPS. 5387 03:27:31,921 --> 03:27:33,856 STORIES THAT HOPEFULLY CAN 5388 03:27:33,856 --> 03:27:35,191 MOTIVATE AND HAVE LESSONS FOR 5389 03:27:35,191 --> 03:27:44,800 THE REST OF US. 5390 03:27:44,800 --> 03:27:49,171 AND I WANT TO RECOGNIZE SUNITHA 5391 03:27:49,171 --> 03:27:50,706 MALPATI TO CHAIR THE SESSION. 5392 03:27:50,706 --> 03:27:53,376 >> THANK YOU FOR STICKING WITH 5393 03:27:53,376 --> 03:27:55,211 US THIS LAST SESSION. 5394 03:27:55,211 --> 03:27:57,513 WE SPENT THE DAY I THINK TALKING 5395 03:27:57,513 --> 03:28:00,182 ABOUT THE INNOVATIONS AND 5396 03:28:00,182 --> 03:28:02,218 CHALLENGES AND OPPORTUNITIES IN 5397 03:28:02,218 --> 03:28:03,352 NEUROSCIENCE AND RESEARCH. 5398 03:28:03,352 --> 03:28:06,389 I WOULD LIKE TO SPEND THIS 5399 03:28:06,389 --> 03:28:09,325 SESSION ON SOMETHING THAT IS 5400 03:28:09,325 --> 03:28:09,992 CRITICALLY IMPORTANT, 5401 03:28:09,992 --> 03:28:12,161 STRATEGICALLY IMPORTANT TO 5402 03:28:12,161 --> 03:28:15,798 MOVING THE NEEDLE ON SCIENCE. 5403 03:28:15,798 --> 03:28:19,402 WE THINK OF IT AS A SOFT SKILL, 5404 03:28:19,402 --> 03:28:21,070 SOFT TOOL, THAT IS STORYTELLING. 5405 03:28:21,070 --> 03:28:22,838 EVERYONE IN THE ROOM HAS A STORY 5406 03:28:22,838 --> 03:28:26,842 TO TELL ABOUT WHAT BROUGHT THEM 5407 03:28:26,842 --> 03:28:28,210 HERE AND PROBABLY INCREDIBLE 5408 03:28:28,210 --> 03:28:30,046 STORIES THAT HAVE MOVED THE 5409 03:28:30,046 --> 03:28:31,314 NEEDLE IN SCIENCE. 5410 03:28:31,314 --> 03:28:33,115 WE WOULD LOVE TO ENGAGE YOU IN 5411 03:28:33,115 --> 03:28:36,152 THE SECOND HALF OF THE SESSION 5412 03:28:36,152 --> 03:28:38,020 AND BRING YOUR STORIES ABOUT THE 5413 03:28:38,020 --> 03:28:39,989 POWER OF YOUR STORIES TO 5414 03:28:39,989 --> 03:28:40,623 CHANGING SCIENCE. 5415 03:28:40,623 --> 03:28:44,427 FIRST WE'LL START OFF WITH A 5416 03:28:44,427 --> 03:28:45,928 GROUP OF INCREDIBLE ADVOCATES 5417 03:28:45,928 --> 03:28:48,097 THAT KNOW FULL WELL THAT DATA 5418 03:28:48,097 --> 03:28:50,232 DRIVES THE SCIENCE, THAT THE 5419 03:28:50,232 --> 03:28:52,568 STORIES ARE WHAT OFTEN MOVE 5420 03:28:52,568 --> 03:28:54,303 PEOPLE TO ACT. 5421 03:28:54,303 --> 03:28:56,739 THEY HUMANIZE THE COMPLEX 5422 03:28:56,739 --> 03:28:58,140 SCIENCE, BUILD COMMUNITY. 5423 03:28:58,140 --> 03:29:02,011 WE USE IT IN FUNDRAISING. 5424 03:29:02,011 --> 03:29:06,682 BUT THEY BRING URGENCY AND 5425 03:29:06,682 --> 03:29:07,183 CLARITY TO RESEARCHERS, 5426 03:29:07,183 --> 03:29:08,517 POLICYMAKERS, THEY ARE OFTEN 5427 03:29:08,517 --> 03:29:10,386 MORE IMPORTANT SOMETIMES THAN A 5428 03:29:10,386 --> 03:29:12,588 WHITE PAPER OR PUBLICATION. 5429 03:29:12,588 --> 03:29:15,124 WE'LL EXPLORE ALL OF OUR STORIES 5430 03:29:15,124 --> 03:29:17,460 TODAY BUT WE'RE ALSO GOING TO 5431 03:29:17,460 --> 03:29:23,366 ASK YOU TO THINK THROUGH THE 5432 03:29:23,366 --> 03:29:24,633 PRACTICAL INSPIRATION AND THE 5433 03:29:24,633 --> 03:29:25,768 PRACTICAL INSPIRATION THAT 5434 03:29:25,768 --> 03:29:27,903 STORIES BRING BUT THEN THE POWER 5435 03:29:27,903 --> 03:29:29,338 OF THAT TO CHANGE SYSTEMS FOR 5436 03:29:29,338 --> 03:29:31,841 THE PEOPLE THAT ARE LIVING WITH 5437 03:29:31,841 --> 03:29:32,441 THESE CONDITIONS. 5438 03:29:32,441 --> 03:29:35,277 I WANT TO START BY SAYING THAT I 5439 03:29:35,277 --> 03:29:41,851 AM THE VICE PRESIDENT OF A 5440 03:29:41,851 --> 03:29:42,852 PATIENT ADVOCACY ORGANIZATION, 5441 03:29:42,852 --> 03:29:43,786 CACNA1A FOUND IDENTIFICATION, A 5442 03:29:43,786 --> 03:29:49,658 MOM TO A 7-YEAR-OLD DAUGHTER 5443 03:29:49,658 --> 03:29:51,794 WITH THE RARE CONDITION, 5444 03:29:51,794 --> 03:29:53,829 ATTORNEY BY BACKGROUND, TRAINED 5445 03:29:53,829 --> 03:29:58,033 MY ENTIRE LEGAL CAREER ABOUT 5446 03:29:58,033 --> 03:29:59,468 TELLING MY CLIENTS' STORIES. 5447 03:29:59,468 --> 03:30:02,204 I WAS NOT USED TO TELLING MY OWN 5448 03:30:02,204 --> 03:30:04,106 STORY, NOT COMFORTABLE SHARING 5449 03:30:04,106 --> 03:30:09,678 MY OWN STORY AFTER MY DAUGHTER 5450 03:30:09,678 --> 03:30:10,279 WAS DIAGNOSED BUT UNDERSTOOD 5451 03:30:10,279 --> 03:30:11,680 THAT WAS AN ESSENTIAL FEATURE OF 5452 03:30:11,680 --> 03:30:15,284 OUR ABILITY TO MOVE THE SCIENCE 5453 03:30:15,284 --> 03:30:16,585 FORWARD IN PATIENT ADVOCACY 5454 03:30:16,585 --> 03:30:17,019 SPACE. 5455 03:30:17,019 --> 03:30:19,188 OVER FIVE YEARS SINCE HER 5456 03:30:19,188 --> 03:30:21,323 DIAGNOSIS I HAVE REFINED AND 5457 03:30:21,323 --> 03:30:23,592 CONTINUED TO TELL OUR STORY IN A 5458 03:30:23,592 --> 03:30:26,962 NUMBER OF DIFFERENT FORUMS. 5459 03:30:26,962 --> 03:30:30,032 I THINK WE STARTED THIS ENTIRE 5460 03:30:30,032 --> 03:30:31,167 NON-PROFIT FORUM WITH THE STORY 5461 03:30:31,167 --> 03:30:41,043 OF REPRESENTATIVE WEXTON, AND 5462 03:30:41,043 --> 03:30:43,512 RON SHARING HIS STORY. 5463 03:30:43,512 --> 03:30:48,584 WE HAVE ACCESS TO SOCIAL MEDIA, 5464 03:30:48,584 --> 03:30:49,885 DIFFERENT OUTLETS, AND WE'RE NOT 5465 03:30:49,885 --> 03:30:51,854 FIGHTING FOR SOMEONE TO LISTEN 5466 03:30:51,854 --> 03:30:54,390 BECAUSE WE CAN PUT IT OUT THERE. 5467 03:30:54,390 --> 03:30:58,928 WE'LL EXPLORE ALL THOSE THEMES 5468 03:30:58,928 --> 03:30:59,328 TODAY. 5469 03:30:59,328 --> 03:31:00,629 FIRST, JENNIFER, SHARE MAYBE 5470 03:31:00,629 --> 03:31:02,164 YOUR PERSONAL STORY THAT BROUGHT 5471 03:31:02,164 --> 03:31:05,167 YOU INTO THE DISEASE ADVOCACY 5472 03:31:05,167 --> 03:31:05,568 SPACE. 5473 03:31:05,568 --> 03:31:07,303 >> THANK YOU. 5474 03:31:07,303 --> 03:31:10,773 JENNIFER SILLS FROM SAN 5475 03:31:10,773 --> 03:31:11,340 FRANCISCO, CALIFORNIA. 5476 03:31:11,340 --> 03:31:12,942 IN 2016 MY DAUGHTER WAS SIXTH IN 5477 03:31:12,942 --> 03:31:19,615 THE WORLD TO BE DIAGNOSED WITH 5478 03:31:19,615 --> 03:31:21,283 OCHER CHON SYNDROME, WE SEARCH 7 5479 03:31:21,283 --> 03:31:24,253 YEARS TO FIND WHY SHE HAD 5480 03:31:24,253 --> 03:31:25,988 DIFFICULTY WALKING, EATING, 5481 03:31:25,988 --> 03:31:26,455 TALKING. 5482 03:31:26,455 --> 03:31:27,957 OUR DOCTOR HANDED US THE ONLY 5483 03:31:27,957 --> 03:31:30,292 INFORMATION OUT THERE WHICH WAS 5484 03:31:30,292 --> 03:31:32,094 A SINGLE PUBLICATION DESCRIBING 5485 03:31:32,094 --> 03:31:34,897 THE SYNDROME, AND SAID GOOD 5486 03:31:34,897 --> 03:31:35,898 LUCK. 5487 03:31:35,898 --> 03:31:39,401 AND I WENT HOME, I WAS AN 5488 03:31:39,401 --> 03:31:40,936 ENGLISH MAJOR AT BERKELEY, 5489 03:31:40,936 --> 03:31:44,073 THOUGHT I WAS HOT STUFF. 5490 03:31:44,073 --> 03:31:45,274 I REALIZED I HAD TO LOOK UP 5491 03:31:45,274 --> 03:31:47,009 EVERY OTHER WORD TO UNDERSTAND 5492 03:31:47,009 --> 03:31:48,143 MY DAUGHTER'S DIAGNOSIS. 5493 03:31:48,143 --> 03:31:51,313 I KNEW WE HAD TO DO BETTER. 5494 03:31:51,313 --> 03:31:54,183 I LOOKED UP THE AUTHOR, DR. 5495 03:31:54,183 --> 03:31:55,851 WENDY CHUNG FROM COLUMBIA, AND I 5496 03:31:55,851 --> 03:31:56,552 CALLED HER. 5497 03:31:56,552 --> 03:31:58,754 I HAD TWO PAGES OF NOTES. 5498 03:31:58,754 --> 03:32:01,590 I WAS AN ATTORNEY, LIKE SUNITHA. 5499 03:32:01,590 --> 03:32:02,992 I WAS THOROUGH. 5500 03:32:02,992 --> 03:32:06,395 WE GOT THROUGH FOUR QUESTIONS. 5501 03:32:06,395 --> 03:32:08,297 SHE TOLD ME THE COLD HARD FACTS 5502 03:32:08,297 --> 03:32:09,398 OF RARE DISEASE, WHICH WAS NO 5503 03:32:09,398 --> 03:32:12,735 ONE WAS GOING TO BE STUDYING 5504 03:32:12,735 --> 03:32:15,371 THIS DISEASE UNLESS WE DID IT 5505 03:32:15,371 --> 03:32:15,638 OURSELVES. 5506 03:32:15,638 --> 03:32:17,873 AND SO SHE TOLD ME TO BUILD AN 5507 03:32:17,873 --> 03:32:20,910 ARMY, TO GO OUT AND FIND 60 5508 03:32:20,910 --> 03:32:23,345 OTHER FAMILIES, TO HOST AN 5509 03:32:23,345 --> 03:32:24,980 IN-PERSON CONFERENCE, TO MAKE A 5510 03:32:24,980 --> 03:32:29,184 MOUSE MODEL, AND TO FUND BASIC 5511 03:32:29,184 --> 03:32:29,485 RESEARCH. 5512 03:32:29,485 --> 03:32:36,325 AS I STARTED ON THE JOURNEY HOW 5513 03:32:36,325 --> 03:32:38,227 WAS I GOING TO GET RESEARCHERS 5514 03:32:38,227 --> 03:32:40,930 TO A CONFERENCE, TRUST FAMILIES 5515 03:32:40,930 --> 03:32:42,565 TO JOIN US? 5516 03:32:42,565 --> 03:32:43,365 STORYTELLING. 5517 03:32:43,365 --> 03:32:45,534 HOW WAS I GOING TO FIND MONEY 5518 03:32:45,534 --> 03:32:47,336 FOR BASIC RESEARCH? 5519 03:32:47,336 --> 03:32:48,103 STORYTELLING. 5520 03:32:48,103 --> 03:32:52,041 I THINK AS WE'VE SEEN TODAY 5521 03:32:52,041 --> 03:32:58,614 SINCE THE -- THE ACRONYMS THROW 5522 03:32:58,614 --> 03:32:59,148 ME 5523 03:32:59,148 --> 03:33:02,985 CSNK2A1, WHAT A MOUTHFUL. 5524 03:33:02,985 --> 03:33:08,624 THE NINDS THAT WAS STARTED BY 5525 03:33:08,624 --> 03:33:08,958 STORYTELLING. 5526 03:33:08,958 --> 03:33:11,260 A WOMAN WENT TO CONGRESS AND 5527 03:33:11,260 --> 03:33:13,729 TOLD HER STORY. 5528 03:33:13,729 --> 03:33:15,598 IT'S EASIER TODAY THAN FOR RON, 5529 03:33:15,598 --> 03:33:18,701 WE HAVE SOCIAL MEDIA AND CAN 5530 03:33:18,701 --> 03:33:22,204 LOOK LIKE PROFESSIONALS USING 5531 03:33:22,204 --> 03:33:25,474 CANVA, TIKTOK TO DO 60 OR 5532 03:33:25,474 --> 03:33:27,876 90-SECOND REELS TO GET OUR 5533 03:33:27,876 --> 03:33:30,479 MESSAGE OUT THERE. 5534 03:33:30,479 --> 03:33:31,480 STORYTELLING WILL HOPEFULLY 5535 03:33:31,480 --> 03:33:40,155 BRING TREATMENT TO MY DAUGHTER. 5536 03:33:40,155 --> 03:33:41,023 >> GOOD AFTERNOON. 5537 03:33:41,023 --> 03:33:46,195 I'M GARDNER LAPHAM, AND I'M 5538 03:33:46,195 --> 03:33:48,464 HERE, WHAT BROUGHT ME IN 17 5539 03:33:48,464 --> 03:33:53,969 YEARS AGO WAS AFTER I LOST MY 5540 03:33:53,969 --> 03:33:57,239 SON, HENRY, HE WAS 4. 5541 03:33:57,239 --> 03:34:00,209 HE HAD FEBRILE SEIZURES WHEN 5542 03:34:00,209 --> 03:34:01,777 APPROXIMATE YEARS OLD, WE WERE 5543 03:34:01,777 --> 03:34:03,912 TOLD NOT TO WORRY, THEY GROW OUT 5544 03:34:03,912 --> 03:34:09,251 OF IT. 5545 03:34:09,251 --> 03:34:10,886 I WAS A NURSE. 5546 03:34:10,886 --> 03:34:13,322 I GET IT. 5547 03:34:13,322 --> 03:34:17,860 TURNED 4, AFEBRILE SEIZURE, THEN 5548 03:34:17,860 --> 03:34:18,560 A SECOND ONE. 5549 03:34:18,560 --> 03:34:21,463 WE WENT TO THE NEUROLOGIST WHO 5550 03:34:21,463 --> 03:34:24,800 PUT HIM ON MEDICATION, WE BEGAN 5551 03:34:24,800 --> 03:34:28,237 HIS WORKUP FOR EPILEPSY. 5552 03:34:28,237 --> 03:34:31,006 AND BEFORE HE WAS THERAPEUTIC 5553 03:34:31,006 --> 03:34:31,974 MEDICINE, A FULL WORKUP, HE DIED 5554 03:34:31,974 --> 03:34:32,975 IN HIS SLEEP. 5555 03:34:32,975 --> 03:34:37,913 I FOUND HIM IN HIS BED ONE 5556 03:34:37,913 --> 03:34:38,380 MORNING. 5557 03:34:38,380 --> 03:34:40,282 AND, YOU KNOW, I'M STILL KIND OF 5558 03:34:40,282 --> 03:34:43,552 IN SHOCK THAT THIS HAPPENED. 5559 03:34:43,552 --> 03:34:46,355 WE WERE ALL BLIND SIDED. 5560 03:34:46,355 --> 03:34:50,059 WE DIDN'T KNOW A SEIZE SEIZURED 5561 03:34:50,059 --> 03:34:51,427 TAKE A LIFE LIKE THAT. 5562 03:34:51,427 --> 03:34:53,395 WE MET WITH THE NEUROLOGIST 5563 03:34:53,395 --> 03:34:53,829 ONCE. 5564 03:34:53,829 --> 03:34:56,165 I REMEMBER SAYING CAN YOU DIE 5565 03:34:56,165 --> 03:34:57,499 FROM A SEIZURE, HOW WORRIED 5566 03:34:57,499 --> 03:34:59,134 SHOULD WE BE? 5567 03:34:59,134 --> 03:35:01,170 AGAIN, THIS WAS 17 YEARS AGO. 5568 03:35:01,170 --> 03:35:03,072 THE ADVICE WAS THE SAFEST THING 5569 03:35:03,072 --> 03:35:08,477 IS LET YOUR CHILD SLEEP ALONE. 5570 03:35:08,477 --> 03:35:10,145 I COULDN'T ACCEPT THAT. 5571 03:35:10,145 --> 03:35:12,448 I WAS ALSO TOLD IT'S SO RARE, 5572 03:35:12,448 --> 03:35:13,048 DOESN'T HAPPEN. 5573 03:35:13,048 --> 03:35:14,683 THERE'S NOTHING YOU COULD HAVE 5574 03:35:14,683 --> 03:35:14,883 DONE. 5575 03:35:14,883 --> 03:35:18,721 IT WAS A ONE IN A ZILLION EVENT. 5576 03:35:18,721 --> 03:35:22,324 SO I JUST COULDN'T BELIEVE IT 5577 03:35:22,324 --> 03:35:24,493 DIDN'T HAPPEN TO ANYONE ELSE. 5578 03:35:24,493 --> 03:35:25,561 NINDS, THANK YOU. 5579 03:35:25,561 --> 03:35:27,796 I WAS THINKING IN THIS MEETING, 5580 03:35:27,796 --> 03:35:30,766 I WENT ON THE WEB, NOTHING ABOUT 5581 03:35:30,766 --> 03:35:32,768 WHY HENRY DIED. 5582 03:35:32,768 --> 03:35:35,704 FROM SOMETHING CALLED SUDDEN 5583 03:35:35,704 --> 03:35:41,343 UNEXPECTED DEATH IN EPILEPSY. 5584 03:35:41,343 --> 03:35:43,979 THERE WAS ONE ORGANIZATION IN 5585 03:35:43,979 --> 03:35:46,749 THE UK, A PATIENT-FACING GROUP, 5586 03:35:46,749 --> 03:35:48,751 BUT NOTHING IN THE U.S. 5587 03:35:48,751 --> 03:35:51,653 THERE WAS A RESEARCH PAPER, SAME 5588 03:35:51,653 --> 03:35:53,889 THING AS YOURS, A RESEARCH PAPER 5589 03:35:53,889 --> 03:36:01,497 OUT OF NINDS, WE'VE GOT NEW 5590 03:36:01,497 --> 03:36:02,564 EPILEPSY BENCHMARKS. 5591 03:36:02,564 --> 03:36:04,967 I FOUND A NAME, ANN BERG, I 5592 03:36:04,967 --> 03:36:05,400 REACHED OUT. 5593 03:36:05,400 --> 03:36:07,035 WITH MY STORY IN AN E-MAIL 5594 03:36:07,035 --> 03:36:08,070 THINKING THEY WOULD NEVER 5595 03:36:08,070 --> 03:36:08,504 RESPOND. 5596 03:36:08,504 --> 03:36:11,273 AND SHE DID AND PUT ME IN TOUCH 5597 03:36:11,273 --> 03:36:14,710 WITH ANOTHER PATIENT GROUP THAT 5598 03:36:14,710 --> 03:36:16,311 FUNDS RESEARCH IN THE EPILEPSY 5599 03:36:16,311 --> 03:36:17,980 SPACE, CURE EPILEPSY, THAT'S 5600 03:36:17,980 --> 03:36:21,416 WHAT BEGAN MY JOURNEY IN THIS 5601 03:36:21,416 --> 03:36:21,617 SPACE. 5602 03:36:21,617 --> 03:36:23,152 AND SINCE THEN I'VE GONE ON TO 5603 03:36:23,152 --> 03:36:24,419 WORK WITH A FEW ORGANIZATION 5604 03:36:24,419 --> 03:36:27,089 ALSO BUT WHAT I DO NOW IS 5605 03:36:27,089 --> 03:36:28,490 CO-CHAIR SOMETHING CALLED 5606 03:36:28,490 --> 03:36:30,592 PARTNERS AGAINST MORTALITY IN 5607 03:36:30,592 --> 03:36:34,963 EPILEPSY, AND I ALSO AM PART OF 5608 03:36:34,963 --> 03:36:38,233 A FAMILY FOUNDATION THAT FUNDS 5609 03:36:38,233 --> 03:36:39,735 SUDEP, MORTALITY PREVENTION IN 5610 03:36:39,735 --> 03:36:41,837 THE U.S., WORK ON EPILEPSY IN 5611 03:36:41,837 --> 03:36:48,143 AFRICA AND HOW DO WE NARROW THE 5612 03:36:48,143 --> 03:36:48,477 TREATMENT GAP. 5613 03:36:48,477 --> 03:36:51,280 THAT'S IT IN A NUTSHELL. 5614 03:36:51,280 --> 03:36:52,247 >> INTERESTING TO HEAR YOUR 5615 03:36:52,247 --> 03:36:53,949 STORIES, SO MANY OF US HAVE 5616 03:36:53,949 --> 03:36:55,417 SIMILAR STORIES AND WE HEAR IT 5617 03:36:55,417 --> 03:36:58,587 THROUGH OUR FAMILIES ALL THE 5618 03:36:58,587 --> 03:36:59,688 TIME. 5619 03:36:59,688 --> 03:37:06,662 YOU KNOW, OUR STORIES TOES SEEM 5620 03:37:06,662 --> 03:37:07,596 ISOLATING, BUT THERE'S 5621 03:37:07,596 --> 03:37:08,463 SIMILARITIES. 5622 03:37:08,463 --> 03:37:10,966 AFTER MY DAUGHTER'S DIAGNOSIS I 5623 03:37:10,966 --> 03:37:12,534 WAS NOT GIVEN ANY EVEN -- NOT 5624 03:37:12,534 --> 03:37:13,702 EVEN A PAPER. 5625 03:37:13,702 --> 03:37:15,571 AND WAS TOLD THERE'S NOTHING 5626 03:37:15,571 --> 03:37:17,940 THAT COULD BE DONE, AND TO GO 5627 03:37:17,940 --> 03:37:20,542 HOME AND LOVE MY CHILD AND SAME 5628 03:37:20,542 --> 03:37:25,514 THING THAT A LOT OF PEOPLE HEAR. 5629 03:37:25,514 --> 03:37:31,720 WE FOUND A PAPER, COLD E-MAILED 5630 03:37:31,720 --> 03:37:32,988 CLINICIANS AND RESEARCHERS. 5631 03:37:32,988 --> 03:37:34,223 BECAUSE OF THE STORY, EVEN IN 5632 03:37:34,223 --> 03:37:36,191 THE SUBJECT LINE, MY DAUGHTER 5633 03:37:36,191 --> 03:37:38,393 WAS JUST DIAGNOSED WITH THIS, WE 5634 03:37:38,393 --> 03:37:40,295 NEED HELP, WE GOT RESEARCHERS 5635 03:37:40,295 --> 03:37:42,097 AND CLINICIANS TO RESPOND TO 5636 03:37:42,097 --> 03:37:44,066 THESE COLD E-MAILS WHICH I'M SO 5637 03:37:44,066 --> 03:37:46,501 GRATEFUL FOR IT TO THIS DAY. 5638 03:37:46,501 --> 03:37:49,338 BUT I JUST WANT TO SORT OF 5639 03:37:49,338 --> 03:37:54,343 DOUBLE BACK ON WE UNDERSTAND THE 5640 03:37:54,343 --> 03:37:55,644 IMPORTANCE OF STORYTELLING BUT 5641 03:37:55,644 --> 03:37:58,013 WHAT HAS THAT MADE POSSIBLE IN 5642 03:37:58,013 --> 03:38:00,349 YOUR JOURNEYS AS PARENTS AND 5643 03:38:00,349 --> 03:38:01,483 ADVOCATES, FOR THE MISSIONS OF 5644 03:38:01,483 --> 03:38:07,322 THE ORGANIZATIONS YOU'RE 5645 03:38:07,322 --> 03:38:08,290 INVOLVED WITH? 5646 03:38:08,290 --> 03:38:10,659 >> FROM THE BEGINNING I SAID IT 5647 03:38:10,659 --> 03:38:12,327 BROUGHT EVERYTHING TO BE US, TO 5648 03:38:12,327 --> 03:38:15,130 BE HONEST, FROM ENGAGING 5649 03:38:15,130 --> 03:38:16,265 RESEARCHERS, BUILDING THIS 5650 03:38:16,265 --> 03:38:18,800 NETWORK OF 45 RESEARCHERS NOW 5651 03:38:18,800 --> 03:38:23,772 AROUND THE WORLD, HAVING DONOR 5652 03:38:23,772 --> 03:38:24,106 SUPPORT. 5653 03:38:24,106 --> 03:38:25,173 THEN EMPOWERING FAMILIES TO TELL 5654 03:38:25,173 --> 03:38:26,275 THEIR OWN STORY. 5655 03:38:26,275 --> 03:38:27,609 I FEEL LIKE WHEN FAMILIES KNOW 5656 03:38:27,609 --> 03:38:29,945 HOW TO TELL THEIR OWN STORY THEY 5657 03:38:29,945 --> 03:38:31,747 ARE BETTER ADVOCATES AT THE 5658 03:38:31,747 --> 03:38:35,050 DOCTOR'S OFFICE, WHEN FIGHTING 5659 03:38:35,050 --> 03:38:38,186 FOR IEP RIGHTS, SO I BELIEVE 5660 03:38:38,186 --> 03:38:39,955 THAT STORYTELLING IS WEAVED INTO 5661 03:38:39,955 --> 03:38:48,130 EVERY FACET OF THIS JOURNEY. 5662 03:38:48,130 --> 03:38:49,164 >> I TOTALLY AGREE. 5663 03:38:49,164 --> 03:38:51,133 I DIDN'T KNOW GETTING INTO THIS 5664 03:38:51,133 --> 03:38:53,101 THAT STORYTELLING WAS GOING TO 5665 03:38:53,101 --> 03:38:55,170 BE SO INTEGRATED INTO EVERYTHING 5666 03:38:55,170 --> 03:39:00,275 WE DO. 5667 03:39:00,275 --> 03:39:03,445 BUT WITH THE GROUP, WITH 5668 03:39:03,445 --> 03:39:04,947 CLINICIANS, RESEARCHES, OTHER 5669 03:39:04,947 --> 03:39:07,115 FAMILIES, ADVOCATES, WE FORMED 5670 03:39:07,115 --> 03:39:08,550 PARTNERS AGAINST MORE PALLET IN 5671 03:39:08,550 --> 03:39:11,453 EPILEPSY, WHICH IS A 5672 03:39:11,453 --> 03:39:12,454 COLLABORATIVE, HOUSED WITHIN THE 5673 03:39:12,454 --> 03:39:17,893 AMERICAN EPILEPSY SOCIETY. 5674 03:39:17,893 --> 03:39:20,028 BUT REALLY THE CORNERSTONE IS 5675 03:39:20,028 --> 03:39:21,196 BRINGING THE FAMILY STORIES. 5676 03:39:21,196 --> 03:39:23,699 WE HAVE A CONFERENCE EVERY YEAR, 5677 03:39:23,699 --> 03:39:27,970 EVERY SESSION STARTS WITH A 5678 03:39:27,970 --> 03:39:28,270 STORY. 5679 03:39:28,270 --> 03:39:30,372 WE HAVE WEBINARS, THEY ARE PART 5680 03:39:30,372 --> 03:39:31,907 OF EVERYTHING WE DO. 5681 03:39:31,907 --> 03:39:36,545 AND WHEN I FIRST GOT INTO THIS, 5682 03:39:36,545 --> 03:39:43,618 NO ONE TELLS YOU HOW TO DO THIS 5683 03:39:43,618 --> 03:39:45,787 THERE'S NO ROAD MAP, IT'S 5684 03:39:45,787 --> 03:39:46,188 LONELY. 5685 03:39:46,188 --> 03:39:49,925 I FELT MY WAY AS I WENT. 5686 03:39:49,925 --> 03:39:52,060 YOU KNOW IT'S IMPORTANT AND IT'S 5687 03:39:52,060 --> 03:39:53,662 THE ONLY WAY, THE BRINGS YOU TO 5688 03:39:53,662 --> 03:39:56,164 THE TABLE, TO BE ABLE TO TELL 5689 03:39:56,164 --> 03:40:00,936 YOUR STORY, GIVES YOU 5690 03:40:00,936 --> 03:40:01,269 LEGITIMACY. 5691 03:40:01,269 --> 03:40:03,472 BUT IT REALLY NOT ONLY DOES IT 5692 03:40:03,472 --> 03:40:05,173 HELP MOVE ISSUES BUT HELPS 5693 03:40:05,173 --> 03:40:09,011 CONNECT WITH OTHER FAMILIES AND 5694 03:40:09,011 --> 03:40:10,779 BRING THEM INTO MORE TOO. 5695 03:40:10,779 --> 03:40:12,314 AS YOU SAID, EVERYONE IS SO 5696 03:40:12,314 --> 03:40:13,081 ALONE OUT THERE. 5697 03:40:13,081 --> 03:40:16,051 AND THEN YOU MORE YOU GET INTO 5698 03:40:16,051 --> 03:40:17,886 IT, YOU REALIZE OH MY GOD, SO 5699 03:40:17,886 --> 03:40:19,521 MANY PEOPLE ARE OUT THERE AND WE 5700 03:40:19,521 --> 03:40:29,464 CAN DO SO MUCH MORE TOGETHER. 5701 03:40:29,464 --> 03:40:33,502 >> I'LL NEVER FORGET THE FIRST 5702 03:40:33,502 --> 03:40:35,737 CONFERENCE FOR THE CACNA1A 5703 03:40:35,737 --> 03:40:36,304 FOUNDATION, BROUGHT TOGETHER 5704 03:40:36,304 --> 03:40:40,475 RESEARCHERS, OF COURSE OUR 5705 03:40:40,475 --> 03:40:41,543 FAMILIES, A BASIC RESEARCHER 5706 03:40:41,543 --> 03:40:43,912 CAME UP AFTER THE FIRST DAY AND 5707 03:40:43,912 --> 03:40:45,881 SAID, I'VE BEEN STUDYING THIS 5708 03:40:45,881 --> 03:40:47,783 DISEASE FOR 20 YEARS, I'VE NEVER 5709 03:40:47,783 --> 03:40:50,419 MET A SINGLE PATIENT WITH THIS 5710 03:40:50,419 --> 03:40:52,020 DISORDER. 5711 03:40:52,020 --> 03:40:53,889 AND HE WAS BLOWN AWAY BY SEEING 5712 03:40:53,889 --> 03:40:55,891 THE LIVED EXPERIENCE, SEEING HOW 5713 03:40:55,891 --> 03:40:57,492 THESE KIDS WERE IMPACTED, HOW 5714 03:40:57,492 --> 03:40:59,294 PARENTS AND CAREGIVERS HAD TO 5715 03:40:59,294 --> 03:41:02,264 RESTRUCTURE THEIR LIVES AFTER 5716 03:41:02,264 --> 03:41:03,131 THESE DIAGNOSES. 5717 03:41:03,131 --> 03:41:04,733 HE WAS GOING BACK TO THE LAB 5718 03:41:04,733 --> 03:41:06,701 WITH A DIFFERENT SENSE OF 5719 03:41:06,701 --> 03:41:09,504 PURPOSE AND DIFFERENT MISSION IN 5720 03:41:09,504 --> 03:41:09,805 MIND ALMOST. 5721 03:41:09,805 --> 03:41:13,542 I THINK THAT WAS ONE JUST REALLY 5722 03:41:13,542 --> 03:41:15,143 POWERFUL EXAMPLE OF BRINGING 5723 03:41:15,143 --> 03:41:16,511 BASIC RESEARCHER WHO MAY NOT 5724 03:41:16,511 --> 03:41:18,814 HAVE THE PATIENT IN MIND 5725 03:41:18,814 --> 03:41:20,315 THROUGHOUT THEIR CAREER TO THE 5726 03:41:20,315 --> 03:41:22,451 TABLE, AND KIND OF EMBEDDED IN 5727 03:41:22,451 --> 03:41:23,285 OUR MISSION. 5728 03:41:23,285 --> 03:41:31,460 CAN YOU TALK ABOUT HOW YOU 5729 03:41:31,460 --> 03:41:33,695 SHIFTED YOUR STORIES TO ADVANCE 5730 03:41:33,695 --> 03:41:35,230 YOUR MISSION, WHETHER 5731 03:41:35,230 --> 03:41:36,231 FUNDRAISING, RESEARCHES, OTHER 5732 03:41:36,231 --> 03:41:39,501 FAMILIES, HOW DO YOU THINK ABOUT 5733 03:41:39,501 --> 03:41:42,304 TAILORING YOUR STORY FOR 5734 03:41:42,304 --> 03:41:43,305 DIFFERENT PURPOSES AND 5735 03:41:43,305 --> 03:41:44,306 AUDIENCES? 5736 03:41:44,306 --> 03:41:53,748 >> YEAH, SOMETIMES WE MAY NOT 5737 03:41:53,748 --> 03:41:54,983 THINK ABOUT STORYTELLING, IT 5738 03:41:54,983 --> 03:41:56,151 TAKES TIME, MONEY IF YOU WANT TO 5739 03:41:56,151 --> 03:41:58,587 HIRE SOMEONE TO HELP YOU CRAFT 5740 03:41:58,587 --> 03:42:01,890 YOUR STORY. 5741 03:42:01,890 --> 03:42:04,893 SO WHEN I THINK ABOUT THE EVERY 5742 03:42:04,893 --> 03:42:07,596 LIFE FOUNDATION WHEN GOING TO 5743 03:42:07,596 --> 03:42:10,132 D.C., THE CLOSEST I EVER GOT TO 5744 03:42:10,132 --> 03:42:12,300 ADVOCATING WAS SLEEPING ON MY 5745 03:42:12,300 --> 03:42:13,335 FRIEND'S COUCH IN THE SUMMER 5746 03:42:13,335 --> 03:42:15,070 WHEN THEY WORKED ON THE HILL SO 5747 03:42:15,070 --> 03:42:16,304 THEY HELPED ME THINK ABOUT 5748 03:42:16,304 --> 03:42:25,881 CRAFTING THE STORY, HOW DO I GO 5749 03:42:25,881 --> 03:42:27,582 AND TALK TO A STAFFER AND RELATE 5750 03:42:27,582 --> 03:42:28,984 TO ISSUES. 5751 03:42:28,984 --> 03:42:31,453 BIG ON OUR MINDS, MY COMMUNITY, 5752 03:42:31,453 --> 03:42:32,154 IS TELEHEALTH. 5753 03:42:32,154 --> 03:42:34,122 NUMBER ONE EXPERT IN THE COUNTRY 5754 03:42:34,122 --> 03:42:35,724 IS NO NEW YORK. 5755 03:42:35,724 --> 03:42:38,693 SO THEY CAN'T SEE HER. 5756 03:42:38,693 --> 03:42:40,128 SO TELEHEALTH WOULD BE VALUABLE 5757 03:42:40,128 --> 03:42:40,929 TO THEM. 5758 03:42:40,929 --> 03:42:42,230 AND FOR MANY OTHER REASONS AS 5759 03:42:42,230 --> 03:42:42,531 WELL. 5760 03:42:42,531 --> 03:42:46,334 HOW IS IT THAT WE ARE ABLE TO 5761 03:42:46,334 --> 03:42:49,004 CONVEY THIS MESSAGE, A BILL IS 5762 03:42:49,004 --> 03:42:50,305 COMING ACROSS YOUR DESK, VOTE 5763 03:42:50,305 --> 03:42:52,674 FOR TELEHEALTH, CHECK THE BOX. 5764 03:42:52,674 --> 03:42:55,010 THINKING ABOUT WHAT VISUAL WE 5765 03:42:55,010 --> 03:42:58,046 COULD BRING ALONG, AND HOW WE 5766 03:42:58,046 --> 03:42:59,915 COULD RELATE TO THEIR OWN STORY. 5767 03:42:59,915 --> 03:43:01,349 I REMEMBER TALKING ABOUT IMAGINE 5768 03:43:01,349 --> 03:43:03,451 IF YOU WERE LIVING IN A STATE 5769 03:43:03,451 --> 03:43:05,253 AND YOU MOVED, EVEN IF IT WAS 5770 03:43:05,253 --> 03:43:07,455 JUST FOR COLLEGE. 5771 03:43:07,455 --> 03:43:11,226 YOU COULDN'T SEE -- YOU WERE 5772 03:43:11,226 --> 03:43:14,296 SEEING A PSYCHIATRIST OR 5773 03:43:14,296 --> 03:43:14,863 THERAPIST, YOU INVESTED IN 5774 03:43:14,863 --> 03:43:15,864 FINDING THE RIGHT PERSON AND YOU 5775 03:43:15,864 --> 03:43:18,099 JUST GO TO COLLEGE TO ANOTHER 5776 03:43:18,099 --> 03:43:19,434 STATE, DUE TO THE RULES, YOU 5777 03:43:19,434 --> 03:43:25,640 CAN'T SEE THAT PERSON ANYMORE 5778 03:43:25,640 --> 03:43:26,975 BUT OVER TELEHEALTH YOU COULD 5779 03:43:26,975 --> 03:43:28,376 STILL POSSIBLY SEE THAT PERSON. 5780 03:43:28,376 --> 03:43:30,679 I RELATED THAT BACK TO THE RARE 5781 03:43:30,679 --> 03:43:32,080 DISEASE STORY ABOUT THEIR BEING 5782 03:43:32,080 --> 03:43:33,915 ONE EXPERT IN THE COUNTRY AND 5783 03:43:33,915 --> 03:43:35,650 WHAT THAT DOES TO PATIENT 5784 03:43:35,650 --> 03:43:38,153 POPULATION. 5785 03:43:38,153 --> 03:43:40,255 I WOULD SAY MOST, 99.9% GOT IT 5786 03:43:40,255 --> 03:43:41,990 AT THAT POINT, WHEN I JUST 5787 03:43:41,990 --> 03:43:46,027 TALKED ABOUT RARE DISEASE IT 5788 03:43:46,027 --> 03:43:47,028 GLAZES RIGHT OVER. 5789 03:43:47,028 --> 03:43:49,998 MOST PEOPLE CAN UNDERSTAND THE 5790 03:43:49,998 --> 03:43:52,067 MENTAL HEALTH ASPECT SO I WAS 5791 03:43:52,067 --> 03:43:54,336 ABLE TO INTERTWINE THOSE. 5792 03:43:54,336 --> 03:43:56,871 I DO THINK AS FAR AS WHEN 5793 03:43:56,871 --> 03:43:58,273 FOUNDATIONS ARE THINKING ABOUT 5794 03:43:58,273 --> 03:44:02,577 STRATEGY, ABOUT MOVING THE 5795 03:44:02,577 --> 03:44:05,013 NEEDLE, STORYTELLING IS A REALLY 5796 03:44:05,013 --> 03:44:05,580 IMPORTANT INVESTMENT IN THAT 5797 03:44:05,580 --> 03:44:08,183 PROCESS. 5798 03:44:08,183 --> 03:44:09,951 >> YEAH, WE KNOW WE HAVE TO 5799 03:44:09,951 --> 03:44:12,821 CONNECT OUR STORIES TO THE 5800 03:44:12,821 --> 03:44:14,122 AUDIENCE AND UNDERSTAND WHAT 5801 03:44:14,122 --> 03:44:21,630 THEIR PRIORITIES ARE, TRY TO 5802 03:44:21,630 --> 03:44:24,899 MEET THEM THERE. 5803 03:44:24,899 --> 03:44:29,070 SO IN SUDEP, I'VE MET SO MANY 5804 03:44:29,070 --> 03:44:31,373 BEREAVED FAMILIES ALONG THE WAY. 5805 03:44:31,373 --> 03:44:37,812 SOME THING THAT RINGS TRUE, WHAT 5806 03:44:37,812 --> 03:44:39,614 MOST PEOPLE SAY, I DIDN'T KNOW 5807 03:44:39,614 --> 03:44:42,117 IT COULD HAPPEN, MY DOCTOR 5808 03:44:42,117 --> 03:44:44,919 DIDN'T TELL ME MY KID COULD DIE 5809 03:44:44,919 --> 03:44:45,654 AND MAYBE SOMETHING WE COULD 5810 03:44:45,654 --> 03:44:46,921 HAVE DONE. 5811 03:44:46,921 --> 03:44:49,024 I GET IT, WHEN MY SON DIED NO 5812 03:44:49,024 --> 03:44:50,592 ONE WAS TALKING ABOUT IT. 5813 03:44:50,592 --> 03:44:51,860 LIKE NOW EVERYBODY SHOULD BE 5814 03:44:51,860 --> 03:44:55,497 TALKING ABOUT IT. 5815 03:44:55,497 --> 03:44:56,665 IT'S IN THE GUIDELINES. 5816 03:44:56,665 --> 03:44:58,300 YOU HAVE TO PICK THESE THINGS 5817 03:44:58,300 --> 03:45:00,735 OFF ONE AT A TIME. 5818 03:45:00,735 --> 03:45:02,971 SO THE PERSONAL STORIES AND 5819 03:45:02,971 --> 03:45:05,373 RELATIONSHIPS, LIKE A STORY 5820 03:45:05,373 --> 03:45:07,175 DEVELOPS A RELATIONSHIP, AND 5821 03:45:07,175 --> 03:45:09,844 THAT HAS BEEN MEANINGFUL TO SEE 5822 03:45:09,844 --> 03:45:11,212 PRACTICE CHANGE. 5823 03:45:11,212 --> 03:45:13,448 ADVOCATES I WORK WITH, SPEAKING 5824 03:45:13,448 --> 03:45:15,283 WITH CLINICIANS, TALKING TO 5825 03:45:15,283 --> 03:45:16,785 PEOPLE ABOUT HOW TO -- OFTEN 5826 03:45:16,785 --> 03:45:18,386 PEOPLE DON'T TALK ABOUT █THIS 5827 03:45:18,386 --> 03:45:22,357 TOPIC BECAUSE THEY DON'T KNOW 5828 03:45:22,357 --> 03:45:22,524 HOW. 5829 03:45:22,524 --> 03:45:23,725 IT'S HARD. 5830 03:45:23,725 --> 03:45:26,394 AND SO PERSONAL STORIES CAN 5831 03:45:26,394 --> 03:45:27,729 INSPIRE INDIVIDUAL BEHAVIOR 5832 03:45:27,729 --> 03:45:29,164 CHANGE AND ACTION. 5833 03:45:29,164 --> 03:45:30,932 WHAT'S HARDER IS SYSTEM CHANGE, 5834 03:45:30,932 --> 03:45:31,333 RIGHT? 5835 03:45:31,333 --> 03:45:33,401 SO FINDING THE RIGHT PARTNERS TO 5836 03:45:33,401 --> 03:45:38,373 MARRY THE STORIES WITH THE OTHER 5837 03:45:38,373 --> 03:45:41,209 PIECES TO MAKING CHANGE, FOR 5838 03:45:41,209 --> 03:45:42,410 EXAMPLE. 5839 03:45:42,410 --> 03:45:46,781 >> ONE OF THE THINGS THAT WE'VE 5840 03:45:46,781 --> 03:45:49,451 DONE AT THE CACNA1A FOUNDATION 5841 03:45:49,451 --> 03:45:51,252 IS SET UP AN OPPORTUNITY ON THE 5842 03:45:51,252 --> 03:45:56,191 WEB PAGE FOR FOR PEOPLE TO TELL 5843 03:45:56,191 --> 03:45:57,092 THEIR STORIES. 5844 03:45:57,092 --> 03:45:59,627 EVERY MONTH WE GET AN E-MAIL 5845 03:45:59,627 --> 03:46:02,230 FROM A NEWLY DIAGNOSED FAMILY 5846 03:46:02,230 --> 03:46:03,465 SAYING THAT WAS THE MOST 5847 03:46:03,465 --> 03:46:06,034 IMPORTANT RESOURCE WE HAD AFTER 5848 03:46:06,034 --> 03:46:07,335 OUR DIAGNOSIS BECAUSE THEIR 5849 03:46:07,335 --> 03:46:08,370 CLINICIAN OFTEN CAN'T TELL THEM 5850 03:46:08,370 --> 03:46:09,971 ANYTHING ABOUT WHAT OTHER KIDS 5851 03:46:09,971 --> 03:46:11,706 LOOK LIKE, WHAT OTHER PATIENTS 5852 03:46:11,706 --> 03:46:14,075 LOOK LIKE WITH THIS DISEASE. 5853 03:46:14,075 --> 03:46:16,945 AND SO THEY WILL LITERALLY READ 5854 03:46:16,945 --> 03:46:19,714 THE 20-PLUS STORIES WE PUT UP 5855 03:46:19,714 --> 03:46:20,949 THERE AND WE CONSTANTLY 5856 03:46:20,949 --> 03:46:23,017 ENCOURAGE FAMILIES TO SHARE 5857 03:46:23,017 --> 03:46:24,219 THEIR STORIES WITH US BECAUSE 5858 03:46:24,219 --> 03:46:27,789 IT'S SUCH A SOURCE OF HOPE AND 5859 03:46:27,789 --> 03:46:29,624 COMFORT TO HEAR FROM OTHER 5860 03:46:29,624 --> 03:46:30,358 FAMILIES. 5861 03:46:30,358 --> 03:46:32,494 ONE OF THE THINGS, JENNIFER, 5862 03:46:32,494 --> 03:46:34,629 YOU'VE BEEN WORKING ON, YOU'VE 5863 03:46:34,629 --> 03:46:36,264 ALREADY HAD, GETTING FAMILIES 5864 03:46:36,264 --> 03:46:37,065 COMFORTABLE TELLING THEIR 5865 03:46:37,065 --> 03:46:39,667 STORIES IN FRONT OF REGULATORS 5866 03:46:39,667 --> 03:46:41,069 AND POLICYMAKERS, NOT JUST YOU 5867 03:46:41,069 --> 03:46:43,471 AS THE LEADER OF YOUR 5868 03:46:43,471 --> 03:46:44,305 ORGANIZATION BUT REALLY 5869 03:46:44,305 --> 03:46:45,206 EMPOWERING YOUR COMMUNITY. 5870 03:46:45,206 --> 03:46:46,908 CAN YOU TALK ABOUT THAT JOURNEY 5871 03:46:46,908 --> 03:46:50,111 AND GETTING FAMILIES TO OPEN UP 5872 03:46:50,111 --> 03:46:53,114 AND FEEL COMFORTABLE GOING 5873 03:46:53,114 --> 03:46:54,616 BEFORE POTENTIAL CHANGE-MAKING 5874 03:46:54,616 --> 03:46:55,583 ADVOCACY BODIES AND STAKEHOLDERS 5875 03:46:55,583 --> 03:47:00,188 TO ADVANCE THE MISSION OF YOUR 5876 03:47:00,188 --> 03:47:00,522 ORGANIZATION? 5877 03:47:00,522 --> 03:47:05,393 >> YEAH, WE ACTUALLY TRY TO 5878 03:47:05,393 --> 03:47:07,262 PRACTICE STORYTELLING ACROSS 5879 03:47:07,262 --> 03:47:08,596 STAKEHOLDERS, SO WE -- WHETHER 5880 03:47:08,596 --> 03:47:11,633 THAT'S WHEN GOING INTO AN IEP 5881 03:47:11,633 --> 03:47:13,501 MEETING, GIVING A POWERPOINT 5882 03:47:13,501 --> 03:47:14,235 PRESENTATION, HELPING THEM 5883 03:47:14,235 --> 03:47:17,305 NAVIGATE HOW TO TALK ABOUT THE 5884 03:47:17,305 --> 03:47:19,340 SYNDROME, AT YOU ARE CONFERENCE 5885 03:47:19,340 --> 03:47:26,247 THIS SUMMER SOME PEOPLE MAY KNOW 5886 03:47:26,247 --> 03:47:28,450 POD CASTER, EFFIE PARKS, ONCE 5887 03:47:28,450 --> 03:47:29,984 UPON A GENE, COMING TO RUN A 5888 03:47:29,984 --> 03:47:36,624 WORK 5889 03:47:36,624 --> 03:47:39,260 WORKSHOP TALKING ABOUT 5890 03:47:39,260 --> 03:47:39,594 STORYTELLING. 5891 03:47:39,594 --> 03:47:40,995 THE MORE -- I SAID THIS BEFORE, 5892 03:47:40,995 --> 03:47:43,965 THE MORE THEY CAN TALK ABOUT IT 5893 03:47:43,965 --> 03:47:45,934 AMONGST THEMSELVES, I THINK JUST 5894 03:47:45,934 --> 03:47:49,137 EMPOWERS THEM IN SO MANY OTHER 5895 03:47:49,137 --> 03:47:55,710 WAYS TO MAKE A DIFFERENCE. 5896 03:47:55,710 --> 03:48:01,916 AVENUES TO MAKE AN INVESTMENT. 5897 03:48:01,916 --> 03:48:02,884 >> ARE THERE SPECIFIC TRAININGS 5898 03:48:02,884 --> 03:48:04,219 OR TOOLS THAT YOU FOUND OUT 5899 03:48:04,219 --> 03:48:08,056 THERE THAT HAVE BEEN HELPFUL FOR 5900 03:48:08,056 --> 03:48:09,624 CRAFTING STORIES? 5901 03:48:09,624 --> 03:48:10,091 >> NO! 5902 03:48:10,091 --> 03:48:12,160 I MEAN, TO BE HONEST, I HAVEN'T 5903 03:48:12,160 --> 03:48:13,394 REALLY LOOKED. 5904 03:48:13,394 --> 03:48:15,096 IT WAS PREPARING FOR THIS, WOW, 5905 03:48:15,096 --> 03:48:16,564 WE NEED TO DO ANY A MORE 5906 03:48:16,564 --> 03:48:18,099 INFORMED WAY. 5907 03:48:18,099 --> 03:48:20,702 EVERYONE KIND OF FUMBLES. 5908 03:48:20,702 --> 03:48:22,170 WE'RE ALWAYS NERVOUS AROUND HOW 5909 03:48:22,170 --> 03:48:25,106 DO YOU MARRY THE STWOAR A 5910 03:48:25,106 --> 03:48:26,341 MESSAGE, RIGHT? 5911 03:48:26,341 --> 03:48:30,645 SO WE WALK -- THE PEOPLE WHO 5912 03:48:30,645 --> 03:48:32,180 PRESENT AT OUR MEETINGS, WE WALK 5913 03:48:32,180 --> 03:48:34,115 THROUGH HOW YOU BALANCE THAT. 5914 03:48:34,115 --> 03:48:40,421 I THINK WE COULD DO A A BETTER 5915 03:48:40,421 --> 03:48:40,588 JOB. 5916 03:48:40,588 --> 03:48:45,994 THE POINT ABOUT SOCIAL MEDIA, WE 5917 03:48:45,994 --> 03:48:47,195 HAVE A FACEBOOK PAGE. 5918 03:48:47,195 --> 03:48:48,229 EVERYBODY DOES. 5919 03:48:48,229 --> 03:48:50,765 I GET DATA EVERY MONTH FROM THAT 5920 03:48:50,765 --> 03:48:51,799 THING. 5921 03:48:51,799 --> 03:48:53,601 LIKE THE PERSONAL STORIES ARE -- 5922 03:48:53,601 --> 03:48:57,038 I MEAN, OFF THE CHARTS, HIGH 5923 03:48:57,038 --> 03:48:58,406 CLICK-THROUGHS, WHATEVER YOU 5924 03:48:58,406 --> 03:48:59,707 CALL IT. 5925 03:48:59,707 --> 03:49:01,209 I'M ALWAYS AMAZED. 5926 03:49:01,209 --> 03:49:02,944 GOSH, WE DON'T HARNESS THIS AS 5927 03:49:02,944 --> 03:49:05,346 MUCH AS WE SHOULD OR WE COULD. 5928 03:49:05,346 --> 03:49:07,849 BECAUSE IT IS HARD. 5929 03:49:07,849 --> 03:49:11,986 WE DO A REMEMBRANCE WALL, AND 5930 03:49:11,986 --> 03:49:15,023 IT'S LIKE PEOPLE WANT TO SHARE 5931 03:49:15,023 --> 03:49:16,524 THEIR STORIES, AND PEOPLE ARE 5932 03:49:16,524 --> 03:49:18,226 WILLING TO PUT THEIR LOVED ONES 5933 03:49:18,226 --> 03:49:19,561 UP THERE. 5934 03:49:19,561 --> 03:49:22,397 IT'S ALWAYS AMAZING TO ME SO 5935 03:49:22,397 --> 03:49:25,166 MANY PEOPLE THAT WANT TO SHARE. 5936 03:49:25,166 --> 03:49:26,601 I'M ALWAYS STRUGGLING, HOW DO WE 5937 03:49:26,601 --> 03:49:27,702 DO THAT? 5938 03:49:27,702 --> 03:49:30,104 IT'S A HUGE RESPONSIBILITY. 5939 03:49:30,104 --> 03:49:34,475 BUT I THINK WHAT YOU'RE DOING, 5940 03:49:34,475 --> 03:49:36,277 HOW TO TELL THEIR STORIES, 5941 03:49:36,277 --> 03:49:37,645 THAT'S A GREAT IDEA. 5942 03:49:37,645 --> 03:49:38,947 IT IS A PROFESSIONAL THING TO 5943 03:49:38,947 --> 03:49:39,447 DO. 5944 03:49:39,447 --> 03:49:41,783 YOU WERE TALKING ABOUT THE MOTH 5945 03:49:41,783 --> 03:49:43,551 EARLIER, I THINK ABOUT TED 5946 03:49:43,551 --> 03:49:46,454 TALKS, WE NEED MORE OF THOSE 5947 03:49:46,454 --> 03:49:49,023 PEOPLE IN OUR SPACE TO HELP US 5948 03:49:49,023 --> 03:49:51,426 PROFESSIONALIZE HOW WE COMMUNAL 5949 03:49:51,426 --> 03:49:51,693 INDICATE. 5950 03:49:51,693 --> 03:49:53,728 TO INSPIRE PEOPLE TO KNOW 5951 03:49:53,728 --> 03:49:58,633 STORIES ARE VALID AND IMPORTANT 5952 03:49:58,633 --> 03:50:01,002 BECAUSE WE CAN BE INTIMIDATED BY 5953 03:50:01,002 --> 03:50:02,470 THIS WORLD, YOU KNOW, IF YOU'RE 5954 03:50:02,470 --> 03:50:05,573 NOT FROM THE MEDICAL WORLD, TO 5955 03:50:05,573 --> 03:50:08,576 KNOW YOUR VOICE MATTERS, THAT 5956 03:50:08,576 --> 03:50:09,877 THERE'S EQUAL PARTNERSHIP MAKING 5957 03:50:09,877 --> 03:50:11,446 THIS STUFF ADVANCE. 5958 03:50:11,446 --> 03:50:13,314 >> ONE OF THE THINGS I'M GOING 5959 03:50:13,314 --> 03:50:16,751 ASK YOU TO TALK ABOUT, WHEN WE 5960 03:50:16,751 --> 03:50:20,221 GET TO THE AUDIENCE Q&A, THE 5961 03:50:20,221 --> 03:50:24,692 STORY COLLIDER PROGRAM AND 5962 03:50:24,692 --> 03:50:25,493 TRAINING THAT THE CHAN 5963 03:50:25,493 --> 03:50:28,029 ZUCKERBERG INITIATIVE GAVE 5964 03:50:28,029 --> 03:50:30,832 ACCESS TO GRANTEES WAS AROUND 5965 03:50:30,832 --> 03:50:31,733 STORYTELLING, BUT THE OTHER 5966 03:50:31,733 --> 03:50:34,902 OPPORTUNITY I WAS TALKING ABOUT 5967 03:50:34,902 --> 03:50:40,141 EARLIER WITH PANELISTS, AT BIO 5968 03:50:40,141 --> 03:50:42,510 LAST YEAR, PATIENT ADVOCACY 5969 03:50:42,510 --> 03:50:48,182 SUMMIT THEY BROUGHT IN TRAINERS 5970 03:50:48,182 --> 03:50:49,884 TO HELP ADVOCATES CRAFT AND 5971 03:50:49,884 --> 03:50:51,052 REFINE THEIR STORY AND GET 5972 03:50:51,052 --> 03:50:54,656 TRAINED HOW TO DELIVER THE 5973 03:50:54,656 --> 03:50:55,256 STORY. 5974 03:50:55,256 --> 03:50:56,190 OFTENTIMES EXECUTIVES GET THIS 5975 03:50:56,190 --> 03:50:59,794 TRAINING AND THEY INVEST IN THAT 5976 03:50:59,794 --> 03:51:02,096 TRAINING, THEY HIRE FOLKS TO 5977 03:51:02,096 --> 03:51:04,699 HELP THEM WITH DELIVERING 5978 03:51:04,699 --> 03:51:07,402 SPEECHES AND IN PUBLIC SPEAKING. 5979 03:51:07,402 --> 03:51:08,436 ADVOCATES ARE THRUST ON THE 5980 03:51:08,436 --> 03:51:09,971 SCENE FROM THE START WITHOUT ANY 5981 03:51:09,971 --> 03:51:10,738 OF THAT. 5982 03:51:10,738 --> 03:51:14,942 SO I THINK INVESTING IN THAT IS 5983 03:51:14,942 --> 03:51:19,781 REALLY IMPORTANT. 5984 03:51:19,781 --> 03:51:21,382 EILEEN PENMILLER SUGGESTED 5985 03:51:21,382 --> 03:51:22,884 ORGANIZING A WORKSHOP IN THE 5986 03:51:22,884 --> 03:51:23,951 RARE EPILEPSY SPACE. 5987 03:51:23,951 --> 03:51:25,520 WE'LL FOLLOW UP WITH YOU, 5988 03:51:25,520 --> 03:51:27,388 EILEEN, ON THAT. 5989 03:51:27,388 --> 03:51:28,623 GO AHEAD, JENNIFER. 5990 03:51:28,623 --> 03:51:30,058 >> THE OTHER THING, IT DOESN'T 5991 03:51:30,058 --> 03:51:33,161 HAVE TO COST A LOT OF MONEY 5992 03:51:33,161 --> 03:51:34,962 EITHER, IS THAT WE HAD AN INTERN 5993 03:51:34,962 --> 03:51:38,166 THAT CAME FROM THE PUBLIC POLICY 5994 03:51:38,166 --> 03:51:40,802 SCHOOL AT UC-BERKELEY, I RAN OUT 5995 03:51:40,802 --> 03:51:45,707 OF IDEAS OF WHAT TO HAVE HER DO 5996 03:51:45,707 --> 03:51:45,940 FOR US. 5997 03:51:45,940 --> 03:51:52,914 I WENT TO ChatGPT AND GAVE IT 5998 03:51:52,914 --> 03:51:58,986 A PROMPT, COME UP WITH TEN 5999 03:51:58,986 --> 03:52:01,889 PROJECTS. 6000 03:52:01,889 --> 03:52:03,858 THEY WILL BRILLIANT, ONE WAS TO 6001 03:52:03,858 --> 03:52:05,626 INTERVIEW FAMILIES, CHOOSE TEN 6002 03:52:05,626 --> 03:52:06,894 TOPICS RELEVANT TO THE 6003 03:52:06,894 --> 03:52:08,629 COMMUNITY, HAVE THEM DO 6004 03:52:08,629 --> 03:52:13,534 15-MINUTE INTERVIEWS, WRITE A 6005 03:52:13,534 --> 03:52:17,238 3-PARAGRAPH ESSAY OR BLOG, NOT 6006 03:52:17,238 --> 03:52:22,543 ESSAY, BIT. -- ABOUT IT. 6007 03:52:22,543 --> 03:52:26,247 WHY WOULDN'T I ChatGPT MORE? 6008 03:52:26,247 --> 03:52:29,717 WE PLUGGED IN AND SAID WRITE A 6009 03:52:29,717 --> 03:52:31,185 60 TO 90 MINUTE SCRIPT FED BY 6010 03:52:31,185 --> 03:52:34,789 THE FAMILY WHO DID THE INTERVIEW 6011 03:52:34,789 --> 03:52:36,190 THAT THEY COULD DO AN AUDIO 6012 03:52:36,190 --> 03:52:38,593 RECORDING OF AND PROVIDE US WITH 6013 03:52:38,593 --> 03:52:40,027 VIDEOS AND PICTURES THAT WE 6014 03:52:40,027 --> 03:52:42,764 COULD USE AS B ROLL WITH THEIR 6015 03:52:42,764 --> 03:52:43,965 VOICEOVER TALKING ABOUT WHATEVER 6016 03:52:43,965 --> 03:52:46,033 THE TOPIC WAS RELATED TO THEIR 6017 03:52:46,033 --> 03:52:47,735 EXPERIENCE. 6018 03:52:47,735 --> 03:52:49,103 AND IT WAS AMAZING. 6019 03:52:49,103 --> 03:52:51,005 FIRST PEOPLE WANTED TO TELL 6020 03:52:51,005 --> 03:52:52,140 THEIR STORIES. 6021 03:52:52,140 --> 03:52:53,741 TWO, OTHER PEOPLE FEEL SEEN WHEN 6022 03:52:53,741 --> 03:52:55,443 READING THE STORY IF THEY HAD A 6023 03:52:55,443 --> 03:52:56,277 SHARED EXPERIENCE. 6024 03:52:56,277 --> 03:53:04,418 AND WE WERE ABLE TO USE AN 6025 03:53:04,418 --> 03:53:05,453 ASSET, THIS THREE-PARAGRAPH 6026 03:53:05,453 --> 03:53:08,289 ASSAY, ACROSS A COUPLE 6027 03:53:08,289 --> 03:53:09,590 MODALITIES, DOING FILMS, NOT 6028 03:53:09,590 --> 03:53:12,026 REALLY FILMS, A REEL, AND THEN 6029 03:53:12,026 --> 03:53:15,196 ASKED ChatGPT TO PULL OUT A 6030 03:53:15,196 --> 03:53:16,731 QUOTE FROM THE INTERVIEW AS WELL 6031 03:53:16,731 --> 03:53:20,468 SO WE COULD USE THAT AS A TITLE 6032 03:53:20,468 --> 03:53:22,403 THAT OUR FAMILIES COULD RELATE 6033 03:53:22,403 --> 03:53:23,137 TO. 6034 03:53:23,137 --> 03:53:26,607 STORYTELLING WHEN I THINK ABOUT, 6035 03:53:26,607 --> 03:53:29,410 I GO BACK TO RON, 27 YEARS AGO, 6036 03:53:29,410 --> 03:53:31,646 HOW CRAFTY YOU HAD TO BE TO TELL 6037 03:53:31,646 --> 03:53:33,014 YOUR STORY AND WE HAVE SO MANY 6038 03:53:33,014 --> 03:53:35,583 WAYS TO TELL IT NOW AND REUSE 6039 03:53:35,583 --> 03:53:36,584 IT. 6040 03:53:36,584 --> 03:53:40,354 DON'T BE AFRAID TO USE A.I., 6041 03:53:40,354 --> 03:53:42,056 WORK SMARTER NOT HARDER, AND 6042 03:53:42,056 --> 03:53:44,192 JUST THINK OF DIFFERENT WAYS 6043 03:53:44,192 --> 03:53:45,760 THAT YOU CAN -- IT DOESN'T HAVE 6044 03:53:45,760 --> 03:53:47,628 TO BE THREE PARAGRAPHS LONG, 6045 03:53:47,628 --> 03:53:50,031 COULD BE ONE QUOTE THAT'S REALLY 6046 03:53:50,031 --> 03:53:52,767 POWERFUL THAT STILL TELLS THE 6047 03:53:52,767 --> 03:53:53,401 STORY. 6048 03:53:53,401 --> 03:53:56,737 >> NO ONE CAN READ THREE 6049 03:53:56,737 --> 03:53:57,939 PARAGRAPHS ANYMORE. 6050 03:53:57,939 --> 03:53:59,173 [LAUGHTER] 6051 03:53:59,173 --> 03:54:01,442 OTHER FORMATS OR MEDIUMS YOU USE 6052 03:54:01,442 --> 03:54:03,945 THAT HAVE BEEN EFFECTIVE OR -- 6053 03:54:03,945 --> 03:54:05,780 >> I LOVE YOUR IDEAS. 6054 03:54:05,780 --> 03:54:09,350 YOU'VE GIVEN ME AN IDEA FOR MY 6055 03:54:09,350 --> 03:54:09,784 19-YEAR-OLD. 6056 03:54:09,784 --> 03:54:11,252 ON THE OTHER SIDE OF THE 6057 03:54:11,252 --> 03:54:14,555 SPECTRUM WHEN IT COMES TO -- OH 6058 03:54:14,555 --> 03:54:15,356 RESOURCES, MORE RESOURCE 6059 03:54:15,356 --> 03:54:18,292 INTENSIVE THING TO DO IS A FILM 6060 03:54:18,292 --> 03:54:21,929 THAT I HAD THE OPPORTUNITY TO 6061 03:54:21,929 --> 03:54:23,698 CO-PRODUCE WITH ANOTHER 6062 03:54:23,698 --> 03:54:26,000 FOUNDATION AND WE RECOGNIZED 6063 03:54:26,000 --> 03:54:28,302 THERE'S SUCH AN ENORMOUS PROBLEM 6064 03:54:28,302 --> 03:54:31,739 OF EPILEPSY AROUND THE WORLD, 6065 03:54:31,739 --> 03:54:32,607 ESPECIALLY LOW-INCOME COUNTRIES, 6066 03:54:32,607 --> 03:54:34,141 MORE THAN 80% OF PEOPLE DON'T 6067 03:54:34,141 --> 03:54:36,110 RECEIVE ANY TREATMENT AT ALL. 6068 03:54:36,110 --> 03:54:38,613 HERE WE ARE IN THIS 6069 03:54:38,613 --> 03:54:40,147 WELL-RESOURCED COUNTRY, NO ONE 6070 03:54:40,147 --> 03:54:41,215 KNOWS ABOUT THIS. 6071 03:54:41,215 --> 03:54:44,318 REALLY, NO ONE TALKS ABOUT 6072 03:54:44,318 --> 03:54:45,019 GLOBAL EPILEPSY. 6073 03:54:45,019 --> 03:54:47,154 WE DECIDED TO TRY AND TELL THE 6074 03:54:47,154 --> 03:54:49,357 STORY AND SHINE A LIGHT ON THE 6075 03:54:49,357 --> 03:54:49,824 ISSUE. 6076 03:54:49,824 --> 03:54:52,159 WE WORKED WITH A FILM PRODUCTION 6077 03:54:52,159 --> 03:54:56,130 COMPANY HERE, WENT TO KENYA, 6078 03:54:56,130 --> 03:54:58,966 INTERVIEWED FOUR FAMILY STORIES, 6079 03:54:58,966 --> 03:55:00,801 AND CREATED A 17-MINUTE 6080 03:55:00,801 --> 03:55:01,736 DOCUMENTARY. 6081 03:55:01,736 --> 03:55:03,437 IT WENT TO 20-PLUS FILM 6082 03:55:03,437 --> 03:55:04,305 FESTIVALS. 6083 03:55:04,305 --> 03:55:06,540 WE'VE TAKEN IT ON THE ROAD AND 6084 03:55:06,540 --> 03:55:09,076 SHOWED IT AT ALL KINDS OF 6085 03:55:09,076 --> 03:55:13,547 SETTINGS REALLY, LIKE ACADEMIC 6086 03:55:13,547 --> 03:55:15,283 SETTINGS, NOW HOSPITALS, SCHOOLS 6087 03:55:15,283 --> 03:55:16,584 OF PUBLIC HEALTH. 6088 03:55:16,584 --> 03:55:19,320 BUT WE'VE ALSO TAKEN IT TO DONOR 6089 03:55:19,320 --> 03:55:21,489 NETWORKS AND HAD PANEL 6090 03:55:21,489 --> 03:55:21,956 CONVERSATIONS. 6091 03:55:21,956 --> 03:55:23,557 WE'VE LEARNED THIS IS AN ENTRY 6092 03:55:23,557 --> 03:55:25,960 POINT FOR PEOPLE TO TELL THEIR 6093 03:55:25,960 --> 03:55:26,227 STORIES. 6094 03:55:26,227 --> 03:55:28,129 IT'S LIKE WATCH THIS SHORT 6095 03:55:28,129 --> 03:55:29,397 DOCUMENTARY AND LEARN ABOUT 6096 03:55:29,397 --> 03:55:30,831 SOMETHING YOU DON'T KNOW MUCH 6097 03:55:30,831 --> 03:55:32,934 ABOUT, AND YOU CAN TALK ABOUT 6098 03:55:32,934 --> 03:55:35,369 EPILEPSY HERE AND ABROAD BUT THE 6099 03:55:35,369 --> 03:55:38,439 BIG THEME IS HOW UNDERRESOURCED, 6100 03:55:38,439 --> 03:55:40,508 HOW URGENT THE PROBLEM IS. 6101 03:55:40,508 --> 03:55:43,878 WE CREATED A CAMPAIGN THAT RUNS 6102 03:55:43,878 --> 03:55:47,748 ALONGSIDE THE FILM TO PROVIDE A 6103 03:55:47,748 --> 03:55:48,916 WAY FOR PEOPLE TO SUPPORT PEOPLE 6104 03:55:48,916 --> 03:55:55,289 ON THE GROUND IN AFRICA . 6105 03:55:55,289 --> 03:55:57,792 AS PART OF THIS WORK WE'RE 6106 03:55:57,792 --> 03:56:00,061 HELPING ENABLE ADVOCATES TO TELL 6107 03:56:00,061 --> 03:56:02,129 THEIR STORY, CHANGE POLICY IN 6108 03:56:02,129 --> 03:56:04,165 THEIR OWN PARTNER ORGANIZATION, 6109 03:56:04,165 --> 03:56:05,866 AND DEVELOPED AN ADVOCATE TOOL 6110 03:56:05,866 --> 03:56:07,101 KIT, PART IS STORYTELLING. 6111 03:56:07,101 --> 03:56:08,135 THERE'S OTHER STUFF. 6112 03:56:08,135 --> 03:56:11,072 NOW I'M THINK WE GO SHOULD DO A 6113 03:56:11,072 --> 03:56:11,939 STORYTELLING TOOL KIT BECAUSE 6114 03:56:11,939 --> 03:56:13,240 THERE'S SO MUCH, YOU'RE RIGHT, 6115 03:56:13,240 --> 03:56:14,875 TO DO IT REALLY WELL. 6116 03:56:14,875 --> 03:56:17,578 I THINK WE TAKE IT FOR GRANTED, 6117 03:56:17,578 --> 03:56:19,447 YOU KNOW, BUT IT'S HARD. 6118 03:56:19,447 --> 03:56:25,252 IT'S A THE CONGRESSWOMAN TODAY 6119 03:56:25,252 --> 03:56:26,220 ABOUT A PHENOMENAL JOB. 6120 03:56:26,220 --> 03:56:31,459 >> ONE OF THE THINGS DO, WE'VE 6121 03:56:31,459 --> 03:56:38,766 HAD TWO CONFERENCES BUT ALWAYS 6122 03:56:38,766 --> 03:56:39,900 HAVE A FILMMAKER, LOW BUDGET, 6123 03:56:39,900 --> 03:56:42,036 COULD BE A STUDENT WHERE YOU'RE 6124 03:56:42,036 --> 03:56:43,204 HAVING YOUR CONFERENCE BUT HAVE 6125 03:56:43,204 --> 03:56:45,373 TIME FOR FAMILIES TO BE 6126 03:56:45,373 --> 03:56:47,174 INTERVIEWED AT OUR CONFERENCE, 6127 03:56:47,174 --> 03:56:48,609 AND RESEARCHERS AND CLINICIANS, 6128 03:56:48,609 --> 03:56:50,611 TELL THE STORY HOW WE WORKING 6129 03:56:50,611 --> 03:56:52,279 TOGETHER HAS BEEN HELPFUL NOT 6130 03:56:52,279 --> 03:56:54,849 ONLY TO RAISE AWARENESS BUT FOR 6131 03:56:54,849 --> 03:56:58,886 FUNDRAISING PURPOSES, WE USE IT 6132 03:56:58,886 --> 03:57:01,956 WITH THE END OF YEAR CAMPAIGN, 6133 03:57:01,956 --> 03:57:03,758 SPONSORS, SUPPORTING EVENTS LIKE 6134 03:57:03,758 --> 03:57:04,425 THIS. 6135 03:57:04,425 --> 03:57:10,031 THERE'S SO MANY MEDIUMS TO 6136 03:57:10,031 --> 03:57:12,600 UTILIZE YOUR STORY BEYOND 6137 03:57:12,600 --> 03:57:13,000 RAISING AWARENESS. 6138 03:57:13,000 --> 03:57:16,404 I WANT TO TOUCH ON HOW TO TELL 6139 03:57:16,404 --> 03:57:19,573 YOUR STORY AND BALANCE BEING 6140 03:57:19,573 --> 03:57:21,409 EMOTIONALLY OPEN AND VULNERABLE 6141 03:57:21,409 --> 03:57:23,511 WITH ADVOCATING FOR A REAL 6142 03:57:23,511 --> 03:57:24,311 PURPOSE. 6143 03:57:24,311 --> 03:57:26,514 LIKE THERE'S SO MANY STORIES 6144 03:57:26,514 --> 03:57:28,082 THAT ARE HEART WRENCHING IN SO 6145 03:57:28,082 --> 03:57:29,917 MANY WAYS BUT HOW DO YOU ALSO 6146 03:57:29,917 --> 03:57:31,986 WEAVE IN LIKE WHAT YOU'RE TRYING 6147 03:57:31,986 --> 03:57:35,456 TO GET OUT OF THE STORYTELLING, 6148 03:57:35,456 --> 03:57:37,525 WHY YOU'RE TELLING THE STORE IN 6149 03:57:37,525 --> 03:57:40,761 THE FIRST PLACE, THE BALANCE 6150 03:57:40,761 --> 03:57:41,395 BETWEEN STRATEGY AND 6151 03:57:41,395 --> 03:57:41,829 VULNERABILITY. 6152 03:57:41,829 --> 03:57:42,730 >> YOU HAVE TO REMEMBER IT 6153 03:57:42,730 --> 03:57:46,200 DOESN'T HAVE TO BE TRAGIC TO BE 6154 03:57:46,200 --> 03:57:46,801 EFFECTIVE. 6155 03:57:46,801 --> 03:57:47,968 THERE'S MANY STORIES THAT WE 6156 03:57:47,968 --> 03:57:50,604 HAVE TO TELL THAT RELATE TO RARE 6157 03:57:50,604 --> 03:57:50,838 DISEASE. 6158 03:57:50,838 --> 03:57:53,340 I THINK THE MORE VULNERABLE THAT 6159 03:57:53,340 --> 03:57:58,746 WE ARE, THE DEEPER WE CONNECT 6160 03:57:58,746 --> 03:58:00,014 WITH OTHER PEOPLE. 6161 03:58:00,014 --> 03:58:03,017 IF YOU'RE MY FRIEND ON FACEBOOK, 6162 03:58:03,017 --> 03:58:04,385 I SOMETIMES LIKE TO WRITE, 6163 03:58:04,385 --> 03:58:07,455 REMEMBER I WAS AN ENGLISH MAJOR, 6164 03:58:07,455 --> 03:58:09,623 AND I WILL WRITE SOMETHING AND 6165 03:58:09,623 --> 03:58:11,025 SOMETIMES WILL SIT ON IT FOR A 6166 03:58:11,025 --> 03:58:13,027 YEAR BEFORE I'LL PUBLISH IT. 6167 03:58:13,027 --> 03:58:14,595 ONE, MAYBE IT'S TOO RAW FOR ME 6168 03:58:14,595 --> 03:58:17,064 TO EVEN PUT IT OUT THERE BECAUSE 6169 03:58:17,064 --> 03:58:19,667 I, YOU KNOW, SOMETIMES PEOPLE 6170 03:58:19,667 --> 03:58:21,368 THINK THAT YOU'RE TRYING ELICIT 6171 03:58:21,368 --> 03:58:22,336 COMFORT, WHICH I'M NOT. 6172 03:58:22,336 --> 03:58:25,773 I JUST WANT TO TELL THE STORY. 6173 03:58:25,773 --> 03:58:28,008 I WILL WAIT A YEAR. 6174 03:58:28,008 --> 03:58:31,445 SO THAT WAS -- OH, I READ YOUR 6175 03:58:31,445 --> 03:58:38,085 POST, THAT WAS A YEAR AGO. 6176 03:58:38,085 --> 03:58:38,886 WE'RE GOOD. 6177 03:58:38,886 --> 03:58:41,055 YEAH, I THINK -- I KNOW THERE'S 6178 03:58:41,055 --> 03:58:42,356 LIKE THE PRIVACY ASPECT OF OUR 6179 03:58:42,356 --> 03:58:43,657 OWN CHILDREN AND THINGS LIKE 6180 03:58:43,657 --> 03:58:46,527 THAT SO I TRY TO TALK ABOUT MY 6181 03:58:46,527 --> 03:58:47,695 EXPERIENCE AND NOT HERS, BECAUSE 6182 03:58:47,695 --> 03:58:49,363 SHE DOESN'T HAVE A VOICE. 6183 03:58:49,363 --> 03:58:50,931 SHE IS 16 NOW. 6184 03:58:50,931 --> 03:58:51,966 I'M PRETTY CERTAIN SHE WOULDN'T 6185 03:58:51,966 --> 03:58:55,803 WANT ME TO TELL SOME OF THE 6186 03:58:55,803 --> 03:58:58,906 STORIES SO I TELL STORIES HOW I 6187 03:58:58,906 --> 03:59:01,609 AND MY PERSPECTIVE AND I THINK 6188 03:59:01,609 --> 03:59:04,178 CAN SHED ENOUGH LIGHT ON OUR 6189 03:59:04,178 --> 03:59:08,415 LIVED EXPERIENCE 6190 03:59:08,415 --> 03:59:11,652 >> I THINK IT'S A GOOD QUESTION. 6191 03:59:11,652 --> 03:59:14,622 TRICKY BECAUSE YOU HAVE TO 6192 03:59:14,622 --> 03:59:16,190 BALANCE EMOTION WITH INSIGHT, 6193 03:59:16,190 --> 03:59:20,761 AND THE EMOTION GRABS PEOPLE'S 6194 03:59:20,761 --> 03:59:22,496 ATTENTION, BUT THE INSIGHT 6195 03:59:22,496 --> 03:59:24,098 ALLOWS FOR CHANGE AND YOU HAVE 6196 03:59:24,098 --> 03:59:24,698 TO BE CLEAR. 6197 03:59:24,698 --> 03:59:26,567 WHO ARE YOU TALKING TO? 6198 03:59:26,567 --> 03:59:28,602 WHAT DO YOU WANT OUT OF IT? 6199 03:59:28,602 --> 03:59:30,604 I DON'T NEED TO SAY IT LIKE THAT 6200 03:59:30,604 --> 03:59:32,940 BUT YOU KNOW WHAT I MEAN. 6201 03:59:32,940 --> 03:59:35,109 SO I THINK YOU'RE RIGHT ABOUT 6202 03:59:35,109 --> 03:59:36,277 BEING VULNERABLE. 6203 03:59:36,277 --> 03:59:37,678 WE HAVE VERY DIFFERENT 6204 03:59:37,678 --> 03:59:39,580 EXPERIENCES BECAUSE MY CHILD'S 6205 03:59:39,580 --> 03:59:42,983 NOT ALIVE AND I STILL LIKE HATE 6206 03:59:42,983 --> 03:59:44,218 GOING TO THE COCKTAIL PARTY AND 6207 03:59:44,218 --> 03:59:46,120 TALKING ABOUT MY KIDS BECAUSE 6208 03:59:46,120 --> 03:59:49,056 YOU'RE LIKE DEBBIE DOWNER. 6209 03:59:49,056 --> 03:59:51,058 IT'S REALLY HARD TO GO INTO 6210 03:59:51,058 --> 03:59:53,527 THOSE SETTINGS, NOT THE COCKTAIL 6211 03:59:53,527 --> 03:59:56,697 PARTY BUT LIKE, YOU KNOW, 6212 03:59:56,697 --> 03:59:58,465 BECAUSE YOU HAVE TO PROVIDE HOPE 6213 03:59:58,465 --> 04:00:00,434 AND A WAY THROUGH. 6214 04:00:00,434 --> 04:00:02,970 YOU HAVE TO SAY WORK WITH ME 6215 04:00:02,970 --> 04:00:03,571 HERE. 6216 04:00:03,571 --> 04:00:04,972 HERE IS THIS TERRIBLE TRAGIC 6217 04:00:04,972 --> 04:00:06,507 STORY, BUT WE CAN WORK TOGETHER 6218 04:00:06,507 --> 04:00:09,376 TO MAKE IT BETTER FOR OTHER 6219 04:00:09,376 --> 04:00:09,610 PEOPLE. 6220 04:00:09,610 --> 04:00:16,183 AND SO I PROBABLY TO A FAULT TRY 6221 04:00:16,183 --> 04:00:18,252 TO FOCUS MORE ON THAT. 6222 04:00:18,252 --> 04:00:21,288 HOW TO TELL A STORY THAT HAS A 6223 04:00:21,288 --> 04:00:24,959 BAD ENDING. 6224 04:00:24,959 --> 04:00:28,529 >> I'M GOING TO OPEN UP TO THE 6225 04:00:28,529 --> 04:00:29,663 AUDIENCE ENGAGEMENT. 6226 04:00:29,663 --> 04:00:33,567 I WANT TO HEAR OTHER PEOPLE'S 6227 04:00:33,567 --> 04:00:37,171 STORIES BUT TIPS AND LESSONS 6228 04:00:37,171 --> 04:00:39,540 LEARNED FROM YOUR JOURNEYS. 6229 04:00:39,540 --> 04:00:40,774 BEFORE THAT WOULD LOVE TO HEAR 6230 04:00:40,774 --> 04:00:43,577 WHAT DO YOU WISH YOU HAD KNOWN 6231 04:00:43,577 --> 04:00:45,212 ABOUT STORYTELLING, WHEN YOU GOT 6232 04:00:45,212 --> 04:00:52,052 INTO THIS SPACE OR ANY ADVICE ON 6233 04:00:52,052 --> 04:00:55,756 INTEGRATING STORYTELLING, INTO 6234 04:00:55,756 --> 04:00:59,159 YOUR ORGANIZATION OR ADVOCACY 6235 04:00:59,159 --> 04:00:59,493 WORK? 6236 04:00:59,493 --> 04:01:02,997 >> I SHOULD HAVE KNOWN THAT 6237 04:01:02,997 --> 04:01:05,699 QUESTION WAS COMING. 6238 04:01:05,699 --> 04:01:07,534 6239 04:01:07,534 --> 04:01:09,003 WELL, TO BE HONEST WHAT I DIDN'T 6240 04:01:09,003 --> 04:01:11,238 EXPECT FROM IT AND I KNOW I KEEP 6241 04:01:11,238 --> 04:01:13,040 ON LOOKING AT YOU, RON, YOU'VE 6242 04:01:13,040 --> 04:01:15,876 BEEN DOING THAT I WHILE, IS THAT 6243 04:01:15,876 --> 04:01:17,811 I STARTED IN 2016. 6244 04:01:17,811 --> 04:01:20,180 WE DIDN'T LAUNCH OUR FOUNDATION 6245 04:01:20,180 --> 04:01:21,248 UNTIL 2018 BECAUSE IT DIDN'T 6246 04:01:21,248 --> 04:01:23,250 HAVE TO BE RIGHT BUT I JUST 6247 04:01:23,250 --> 04:01:25,486 DIDN'T WANT TO LAUNCH WITHOUT 6248 04:01:25,486 --> 04:01:31,759 HAVING A PLAN. 6249 04:01:31,759 --> 04:01:34,962 BUT RECENTLY I'VE FELT 6250 04:01:34,962 --> 04:01:35,629 STORYTELLING FATIGUE. 6251 04:01:35,629 --> 04:01:38,032 I DON'T WANT TO TELL THE STORY 6252 04:01:38,032 --> 04:01:38,265 ANYMORE. 6253 04:01:38,265 --> 04:01:39,733 I DON'T KNOW IF ANYONE HAS 6254 04:01:39,733 --> 04:01:41,302 EXPERIENCED THAT BEFORE. 6255 04:01:41,302 --> 04:01:42,736 HOW YOU LIKE OBVIOUSLY WE STILL 6256 04:01:42,736 --> 04:01:45,339 HAVE TO DO IT, WE'VE GOT A 6257 04:01:45,339 --> 04:01:48,175 MEETING, WE'RE GOING TO DO IT, 6258 04:01:48,175 --> 04:01:52,212 BUT HOW YOU -- AND THEN 6259 04:01:52,212 --> 04:01:53,147 STORYTELLING FATIGUE AND 6260 04:01:53,147 --> 04:01:54,515 SOMETIMES WE GET USED TO TELLING 6261 04:01:54,515 --> 04:01:56,784 THE SAME STORY OVER TIME THAT WE 6262 04:01:56,784 --> 04:01:59,219 FORGET TO TELL THE NEW STORY. 6263 04:01:59,219 --> 04:02:00,120 THAT THERE ARE ALWAYS NEW 6264 04:02:00,120 --> 04:02:02,089 STORIES TO TELL AND HOW TO MAKE 6265 04:02:02,089 --> 04:02:04,158 SURE WE'RE WEAVING THOSE IN. 6266 04:02:04,158 --> 04:02:07,528 MAYBE THAT'S HOW WE PREVENT THE 6267 04:02:07,528 --> 04:02:09,163 FATIGUE IS BEING INVESTING EVEN 6268 04:02:09,163 --> 04:02:11,598 MORE TIME IN THE STORYTELLING, 6269 04:02:11,598 --> 04:02:12,499 I'M NOT SURE. 6270 04:02:12,499 --> 04:02:14,768 I DON'T KNOW, RON, IF YOU HAVE 6271 04:02:14,768 --> 04:02:17,338 WORDS OF ADVICE. 6272 04:02:17,338 --> 04:02:27,881 I'M NOT SURE IF YOU WERE -- YES. 6273 04:02:28,282 --> 04:02:33,554 >> AMANDA, HYDROCEPHALUS 6274 04:02:33,554 --> 04:02:33,854 ASSOCIATION. 6275 04:02:33,854 --> 04:02:36,590 STORIES BUILD TRUST. 6276 04:02:36,590 --> 04:02:39,393 THEY DO CONNECT. 6277 04:02:39,393 --> 04:02:40,961 BUT IT ALSO TAKES A LITTLE BIT 6278 04:02:40,961 --> 04:02:43,564 FROM YOU TOO. 6279 04:02:43,564 --> 04:02:44,264 WHEN YOU'RE WORKING EVERY DAY, 6280 04:02:44,264 --> 04:02:47,935 IN THE CONDITION MANY OF US, 6281 04:02:47,935 --> 04:02:55,008 YOU'RE LIVING THE EXPERIENCE OF 6282 04:02:55,008 --> 04:02:56,377 HYPERMEDICAL VIGILANCE OR 6283 04:02:56,377 --> 04:02:57,411 ADVOCATING CONSTANTLY, MY 6284 04:02:57,411 --> 04:02:59,980 DAUGHTER IS 24, STILL SUPPORTING 6285 04:02:59,980 --> 04:03:02,316 AND MANAGING AND SCAFFOLDING TO 6286 04:03:02,316 --> 04:03:04,651 HELP HER BE INDEPENDENT, TELLING 6287 04:03:04,651 --> 04:03:07,354 THE STORY AND GOING HOME AND 6288 04:03:07,354 --> 04:03:09,323 LIVING IT, IT TAKES PIECES OF 6289 04:03:09,323 --> 04:03:10,591 YOU AND IT'S EXHAUSTING, 6290 04:03:10,591 --> 04:03:12,092 SOMETIMES YOU JUST WANT TO STOP. 6291 04:03:12,092 --> 04:03:16,897 THE OTHER THING THAT WE FIND, I 6292 04:03:16,897 --> 04:03:18,932 HAVE TWO WOMEN ON STAFF WHO LIVE 6293 04:03:18,932 --> 04:03:21,668 WITH THE CONDITION, THEY ARE THE 6294 04:03:21,668 --> 04:03:23,437 SUPPORT AND EDUCATION TEAM. 6295 04:03:23,437 --> 04:03:24,371 WE'RE DEVELOPING THE RESOURCES 6296 04:03:24,371 --> 04:03:25,472 FROM LISTENING TO THE COMMUNITY 6297 04:03:25,472 --> 04:03:27,040 AND TAKING IN THE STORIES. 6298 04:03:27,040 --> 04:03:33,080 THOSE TWO WOMEN ARE SHARING 6299 04:03:33,080 --> 04:03:34,014 STORIES TO HELP PEOPLE GET 6300 04:03:34,014 --> 04:03:35,382 THROUGH A MOMENT IN THE HOSPITAL 6301 04:03:35,382 --> 04:03:39,219 OR A LONG DAY THAT DIDN'T GO 6302 04:03:39,219 --> 04:03:40,854 WELL FOR WHATEVER REASON. 6303 04:03:40,854 --> 04:03:42,623 WE WORK ON TRYING TO FIGURE OUT 6304 04:03:42,623 --> 04:03:50,063 HOW TO FIND SPACE FOR EACH OTHER 6305 04:03:50,063 --> 04:03:57,571 TO VENT OR RELEASE BECAUSE WE 6306 04:03:57,571 --> 04:03:58,605 TAKE HOME EVERY UPON, TWO OR 6307 04:03:58,605 --> 04:04:00,474 THREE MONTHS LATER CHECK ON 6308 04:04:00,474 --> 04:04:02,109 PEOPLE, SUPPORTING THE ENTIRE 6309 04:04:02,109 --> 04:04:03,377 U.S. AND ABROAD. 6310 04:04:03,377 --> 04:04:05,312 THESE STORIES NEVER LEEIVE OUR 6311 04:04:05,312 --> 04:04:09,583 MINDS. 6312 04:04:09,583 --> 04:04:10,484 WE LIVING AND RELIVING STORIES 6313 04:04:10,484 --> 04:04:12,052 AND TELL THEM. 6314 04:04:12,052 --> 04:04:16,457 THE OTHER THING, MY DAUGHTER IS 6315 04:04:16,457 --> 04:04:17,424 NOW 24. 6316 04:04:17,424 --> 04:04:18,992 PEOPLE ARE STILL CONNECTED TO ME 6317 04:04:18,992 --> 04:04:21,128 BECAUSE I'M A MOTHER AND TELL MY 6318 04:04:21,128 --> 04:04:23,564 STORY, BUT IT'S NOT MY STORY 6319 04:04:23,564 --> 04:04:23,797 ANYMORE. 6320 04:04:23,797 --> 04:04:25,065 MY DAUGHTER HAS BEEN OPEN, 6321 04:04:25,065 --> 04:04:27,734 SAYING I'M TIRED OF BEING THE 6322 04:04:27,734 --> 04:04:30,003 POSTER CHILD FOR HYDROCEPHALUS. 6323 04:04:30,003 --> 04:04:33,540 I REALLY HAD TO NAVIGATE THAT AS 6324 04:04:33,540 --> 04:04:35,342 PART OF OUR TRANSITION PROCESS. 6325 04:04:35,342 --> 04:04:37,578 ERIC AND I WERE TALKING ABOUT 6326 04:04:37,578 --> 04:04:38,846 TRANSITION, WE HAVE KIDS IN THE 6327 04:04:38,846 --> 04:04:40,881 SAME AGE RANGE. 6328 04:04:40,881 --> 04:04:42,049 MOVING AWAY FROM BEING ABLE TO 6329 04:04:42,049 --> 04:04:44,251 WALK INTO A PARTY AND YOU'RE 6330 04:04:44,251 --> 04:04:46,553 STANDING WITH YOUR ADULT CHILD, 6331 04:04:46,553 --> 04:04:49,523 OH, AND, OH, YEAH, MY DAUGHTER 6332 04:04:49,523 --> 04:04:51,391 HAS HYDROCEPHALUS, THAT'S NOT 6333 04:04:51,391 --> 04:04:51,725 FAIR. 6334 04:04:51,725 --> 04:04:54,928 I WORK WITH A LOT OF PARENTS IN 6335 04:04:54,928 --> 04:04:57,865 THE TRANSITION PHASE, SPEAKING 6336 04:04:57,865 --> 04:04:59,166 AT WEBINARS, CONFERENCES, 6337 04:04:59,166 --> 04:04:59,800 WORKING WITH OUR FAMILIES, PART 6338 04:04:59,800 --> 04:05:01,869 OF THE THING WE TALK ABOUT IS 6339 04:05:01,869 --> 04:05:04,238 WHEN DOES THE STORY NOT BECOME 6340 04:05:04,238 --> 04:05:05,839 YOURS ANYMORE, HOW DO YOU TELL 6341 04:05:05,839 --> 04:05:13,881 YOUR PIECE OF THE STORY 6342 04:05:13,881 --> 04:05:18,552 WITHOUT -- YOU KNOW, TAKING 6343 04:05:18,552 --> 04:05:19,419 CONTROL OF YOUR CHILD'S STORY 6344 04:05:19,419 --> 04:05:22,055 NOW THAT THEY ARE ADULTS, ON 6345 04:05:22,055 --> 04:05:23,123 CAPITOL HILL, ANOTHER MEDICAL 6346 04:05:23,123 --> 04:05:24,191 CONFERENCE, OR TO ANOTHER FAMILY 6347 04:05:24,191 --> 04:05:26,527 THAT NEEDS TO CONNECT. 6348 04:05:26,527 --> 04:05:28,395 THAT'S REALLY IMPORTANT IN A 6349 04:05:28,395 --> 04:05:30,864 TOOLKIT, AT WHAT POINT DOES THE 6350 04:05:30,864 --> 04:05:32,065 STORY NEED TO TRANSFER, TO THE 6351 04:05:32,065 --> 04:05:34,167 PERSON WHO OWNS IT, WHO IS THE 6352 04:05:34,167 --> 04:05:35,602 LIVED EXPERIENCE AND HOW DO YOU 6353 04:05:35,602 --> 04:05:37,037 SEPARATE YOUR EXPERIENCE AS A 6354 04:05:37,037 --> 04:05:38,539 CAREGIVER FROM THE EXPERIENCE 6355 04:05:38,539 --> 04:05:39,740 EVEN THOUGH WE'RE IN EVERY 6356 04:05:39,740 --> 04:05:41,942 MEDICAL APPOINTMENT, WE'RE STILL 6357 04:05:41,942 --> 04:05:43,810 MAKING DOCTOR APPOINTMENTS, 6358 04:05:43,810 --> 04:05:45,579 WE'RE AT EVERY MRI, EVERY BLOOD 6359 04:05:45,579 --> 04:05:47,347 DRAW, WE FEEL LIKE WE HAVE THE 6360 04:05:47,347 --> 04:05:48,982 CONDITION THAT OUR CHILD HAS. 6361 04:05:48,982 --> 04:05:52,886 IT REALLY DOES FEEL THAT WAY. 6362 04:05:52,886 --> 04:05:53,554 WE DON'T THOUGH. 6363 04:05:53,554 --> 04:05:54,888 WHEN THEY ARE OLDER THEY HAVE 6364 04:05:54,888 --> 04:05:56,723 THAT STORY AND WE DON'T GET TO 6365 04:05:56,723 --> 04:05:57,791 TELL IT WITHOUT THEIR 6366 04:05:57,791 --> 04:05:58,258 PERMISSION. 6367 04:05:58,258 --> 04:06:00,427 THAT HAS TO BE AN INTEGRAL PART 6368 04:06:00,427 --> 04:06:02,896 OF THE TOOLKIT. 6369 04:06:02,896 --> 04:06:05,065 ONE OTHER THING, TO CONNECT THE 6370 04:06:05,065 --> 04:06:06,366 STORYTELLING, THERE'S BEEN 6371 04:06:06,366 --> 04:06:07,701 CONVERSATION THROUGHOUT THE DAY 6372 04:06:07,701 --> 04:06:09,369 HOW DO WE MOTIVATE YOUNG 6373 04:06:09,369 --> 04:06:12,940 RESEARCHERS TO STAY IN OUR 6374 04:06:12,940 --> 04:06:13,774 SPACE. 6375 04:06:13,774 --> 04:06:16,276 AND THAT CONNECTION AND STORIES, 6376 04:06:16,276 --> 04:06:18,145 ONE THING THAT'S REALLY 6377 04:06:18,145 --> 04:06:20,047 IMPORTANT, MANY OF US DO IT HERE 6378 04:06:20,047 --> 04:06:23,283 AT NON-PROFITS, WE HAVE PATIENT 6379 04:06:23,283 --> 04:06:27,487 CONFERENCES, MANY DO INVITE 6380 04:06:27,487 --> 04:06:28,956 YOUNG SCIENTISTS AND THEY SEE 6381 04:06:28,956 --> 04:06:30,457 THE VARIETY AND SPECTRUM OF 6382 04:06:30,457 --> 04:06:32,225 INDIVIDUALS LIVING WITH THE 6383 04:06:32,225 --> 04:06:32,759 CONDITION. 6384 04:06:32,759 --> 04:06:34,161 SO MANY SCIENTISTS SAY LIKE THAT 6385 04:06:34,161 --> 04:06:35,495 WAS THE MOST MEANINGFUL 6386 04:06:35,495 --> 04:06:36,630 EXPERIENCE FOR ME. 6387 04:06:36,630 --> 04:06:41,134 I UNDERSTAND SO MUCH MORE NOW. 6388 04:06:41,134 --> 04:06:43,570 THAT'S ALSO WITH THE NEURONURSES 6389 04:06:43,570 --> 04:06:51,812 AND PHYSICIAN PHYSICIAN ASSISTS 6390 04:06:51,812 --> 04:06:53,413 CRITICAL, SO WE HAVE TRAVEL 6391 04:06:53,413 --> 04:06:57,017 AWARDS TO BRING SCIENTISTS TO 6392 04:06:57,017 --> 04:06:59,419 CONFERENCES TO SHARE POSTERS AND 6393 04:06:59,419 --> 04:07:00,988 TALK TO FAMILIES AND LEARN. 6394 04:07:00,988 --> 04:07:03,757 BUT THEY DON'T HAVE MONEY TO 6395 04:07:03,757 --> 04:07:06,126 COME TO CONFERENCES, SO WE ALL 6396 04:07:06,126 --> 04:07:07,894 NEED TO FIGURE OUT AS A 6397 04:07:07,894 --> 04:07:09,596 COLLECTIVE IF WE REALLY WANT 6398 04:07:09,596 --> 04:07:11,131 YOUNG SCIENTISTS TO STAY 6399 04:07:11,131 --> 04:07:13,133 INVOLVED AND WE THINK THE 6400 04:07:13,133 --> 04:07:16,436 STORIES AND BEING IN PARTNERSHIP 6401 04:07:16,436 --> 04:07:18,805 IN THE SAME SPACE AS PATIENTS 6402 04:07:18,805 --> 04:07:20,273 WILL BE HELPFUL WE NEED TO STEP 6403 04:07:20,273 --> 04:07:23,176 UP AND FIGURE OUT HOW TO FUND 6404 04:07:23,176 --> 04:07:25,278 THEM TO COME TO PATIENT 6405 04:07:25,278 --> 04:07:25,579 CONFERENCES. 6406 04:07:25,579 --> 04:07:27,114 JUST A THOUGHT I WANTED TO BRING 6407 04:07:27,114 --> 04:07:29,049 IN FROM EARLIER. 6408 04:07:29,049 --> 04:07:33,453 BUT THANK YOU, JENNIFER AND 6409 04:07:33,453 --> 04:07:35,188 GARDINER AND SUNITHA, FOR 6410 04:07:35,188 --> 04:07:36,456 EVERYTHING YOU'RE SHARING. 6411 04:07:36,456 --> 04:07:37,991 >> THERE IS ONE ORGANIZATION OUT 6412 04:07:37,991 --> 04:07:43,363 THERE, THEY HAVE THE YOUNG 6413 04:07:43,363 --> 04:07:44,665 INVESTIGATOR DRAFT. 6414 04:07:44,665 --> 04:07:50,737 YOU CAN APPLY AS A YOUNG 6415 04:07:50,737 --> 04:07:51,805 INVESTIGATOR FOR CONFERENCES, WE 6416 04:07:51,805 --> 04:07:53,840 NEED MORE OF THOSE. 6417 04:07:53,840 --> 04:07:55,509 WHEN I GO TO THE THERAPIST AND 6418 04:07:55,509 --> 04:07:57,611 TALK ABOUT MY STORY SHE'S LIKE, 6419 04:07:57,611 --> 04:08:01,348 HE JUST TALK ABOUT IT SO MATTER 6420 04:08:01,348 --> 04:08:05,986 OF FACT, AND THAT'S THE THING. 6421 04:08:05,986 --> 04:08:08,455 IF I'M TALKING TO SOMEONE HOW 6422 04:08:08,455 --> 04:08:14,094 EFFECTIVE CAN I BE IF I'M 6423 04:08:14,094 --> 04:08:15,162 ADVOCATING AT AN OFFICE OR 6424 04:08:15,162 --> 04:08:17,330 MEETING IF I'M A PUDDLE ON THE 6425 04:08:17,330 --> 04:08:17,698 FLOOR? 6426 04:08:17,698 --> 04:08:19,366 THERE'S ALSO THE FINE LINE OF 6427 04:08:19,366 --> 04:08:25,439 HOW DO YOU BE EMOTIONALLY 6428 04:08:25,439 --> 04:08:27,307 VULNERABLE, LIKE RON, YOU DO IT 6429 04:08:27,307 --> 04:08:29,342 SO PERFECTLY, AND BEING 6430 04:08:29,342 --> 04:08:30,944 EFFECTIVE AT THE SAME TIME. 6431 04:08:30,944 --> 04:08:32,479 MAYBE THAT'S WHAT PART OF THE 6432 04:08:32,479 --> 04:08:36,650 FATIGUE IS ABOUT, I FEEL LIKE I 6433 04:08:36,650 --> 04:08:38,318 NEVER ACTUALLY TELL MY STORY TO 6434 04:08:38,318 --> 04:08:40,420 BE HONEST BECAUSE PART OF MY 6435 04:08:40,420 --> 04:08:42,923 STORY IS THE HEARTACHE AND THE 6436 04:08:42,923 --> 04:08:53,467 FACT SHE WAS -- WHEN SHE TURNED 6437 04:08:54,234 --> 04:08:56,403 16 THERE WERE NO FRIENDS BUT 6438 04:08:56,403 --> 04:08:58,839 THAT'S NOT HOW MOST 16-YEAR-OLDS 6439 04:08:58,839 --> 04:08:59,973 ARE SPENDING THEIR BIRTHDAY. 6440 04:08:59,973 --> 04:09:02,442 THERE'S ALSO THAT PART OF 6441 04:09:02,442 --> 04:09:03,243 STORYTELLING WHERE THERE'S THAT 6442 04:09:03,243 --> 04:09:05,579 FINE BALANCE WHERE YOU DON'T 6443 04:09:05,579 --> 04:09:09,015 ACTUALLY REALLY TRULY GET TO GO 6444 04:09:09,015 --> 04:09:16,156 THERE. 6445 04:09:16,156 --> 04:09:18,825 >> I WANT THESE GUYS TO SPEAK. 6446 04:09:18,825 --> 04:09:19,326 >> HE'S GOING FIRST. 6447 04:09:19,326 --> 04:09:22,929 >> I'D LIKE TO GIVE A DIFFERENT 6448 04:09:22,929 --> 04:09:24,231 PERSPECTIVE. 6449 04:09:24,231 --> 04:09:25,999 SO I'M IRVING WEINBERG, I RUN A 6450 04:09:25,999 --> 04:09:28,168 VENTURE STUDIO A MILE FROM HERE. 6451 04:09:28,168 --> 04:09:29,770 WE HAVE TECHNOLOGIES, WE FIGURE 6452 04:09:29,770 --> 04:09:31,571 OUT WHAT WE'RE GOING TO DO WITH 6453 04:09:31,571 --> 04:09:31,805 THEM. 6454 04:09:31,805 --> 04:09:35,976 WE BUILD SYSTEMS FOR UROLOGISTS, 6455 04:09:35,976 --> 04:09:37,644 FOR OWNERS OF THOROUGHBRED 6456 04:09:37,644 --> 04:09:38,645 HORSES, BREAST IMAGING. 6457 04:09:38,645 --> 04:09:40,680 I WAS AT A CONFERENCE YESTERDAY 6458 04:09:40,680 --> 04:09:42,048 ORGANIZED BY DEPARTMENT OF 6459 04:09:42,048 --> 04:09:42,282 DEFENSE. 6460 04:09:42,282 --> 04:09:43,083 THEY DO REVERSE PITCHES. 6461 04:09:43,083 --> 04:09:48,155 THEY SAY THIS IS WHAT WE WANT AT 6462 04:09:48,155 --> 04:09:51,091 THE DIU, WHAT WE WANT AT THIS 6463 04:09:51,091 --> 04:09:51,291 THING. 6464 04:09:51,291 --> 04:09:54,761 JUST WE HAVE -- WE SET ALL 6465 04:09:54,761 --> 04:09:56,062 NON-PROFIT FOR COLLABORATING 6466 04:09:56,062 --> 04:09:57,330 WITH CHILDREN'S NATIONAL 6467 04:09:57,330 --> 04:09:59,232 HOSPITAL, REALLY IT'S IN THE 6468 04:09:59,232 --> 04:10:01,168 LAST HALF HOUR I'VE SAID WE'VE 6469 04:10:01,168 --> 04:10:05,238 BEEN LOOKING, WHAT PROJECT 6470 04:10:05,238 --> 04:10:06,573 SHOULD WE DO? 6471 04:10:06,573 --> 04:10:10,410 YEAH, LET'S SET UP A SCREENING 6472 04:10:10,410 --> 04:10:12,179 FOR SUDDEN INFANT DEATH 6473 04:10:12,179 --> 04:10:13,713 EPILEPSY, IT'S EASY FOR US TO 6474 04:10:13,713 --> 04:10:14,114 DO. 6475 04:10:14,114 --> 04:10:15,081 A DIFFERENT VALUE. 6476 04:10:15,081 --> 04:10:16,316 YOU'RE USED TO THE PROFESSORS 6477 04:10:16,316 --> 04:10:18,118 WHO HAVE BEEN WORKING AT ONE 6478 04:10:18,118 --> 04:10:20,153 THING FOR THE LAST 30 YEARS. 6479 04:10:20,153 --> 04:10:24,257 BUT FOR A LOT OF US IN INDUSTRY, 6480 04:10:24,257 --> 04:10:26,793 IT'S, WELL, WHAT SHOULD WE DO 6481 04:10:26,793 --> 04:10:27,727 NEXT? 6482 04:10:27,727 --> 04:10:28,929 IT'S NICE FOR SOMEBODY TO SAY, 6483 04:10:28,929 --> 04:10:30,030 YEAH, THIS WOULD BE REALLY 6484 04:10:30,030 --> 04:10:31,798 IMPORTANT TO ME. 6485 04:10:31,798 --> 04:10:32,966 WELL, WHO ELSE? 6486 04:10:32,966 --> 04:10:34,100 MAYBE THERE'S A MARKET. 6487 04:10:34,100 --> 04:10:38,305 MAYBE WE SHOULD DO THAT. 6488 04:10:38,305 --> 04:10:38,839 THANK YOU. 6489 04:10:38,839 --> 04:10:40,907 >> ONE OF THE THINGS THAT I 6490 04:10:40,907 --> 04:10:42,309 WANTED TO POINT OUT IS YOU 6491 04:10:42,309 --> 04:10:43,777 TALKED ABOUT HOW IMPORTANT THE 6492 04:10:43,777 --> 04:10:45,278 STORIES ARE. 6493 04:10:45,278 --> 04:10:47,280 I THINK YOU ALSO FORGET THERE'S 6494 04:10:47,280 --> 04:10:49,616 A HUGE AUDIENCE OUT THERE THAT 6495 04:10:49,616 --> 04:10:51,985 YOU MAY NOT HAVE THOUGHT ABOUT. 6496 04:10:51,985 --> 04:10:54,888 EXAMPLES THAT CAME TO MIND, USED 6497 04:10:54,888 --> 04:10:58,458 TO BE, YOU KNOW, YEARS AGO THE 6498 04:10:58,458 --> 04:11:00,560 FDA NEVER WANTED TO SEE A 6499 04:11:00,560 --> 04:11:00,994 PATIENT. 6500 04:11:00,994 --> 04:11:02,929 THEY WOULD PROHIBIT YOU FROM 6501 04:11:02,929 --> 04:11:04,164 BRINGING A PATIENT WHEN YOU HAD 6502 04:11:04,164 --> 04:11:05,465 A MEETING WITH THEM. 6503 04:11:05,465 --> 04:11:06,566 NOW THAT HAS CHANGED. 6504 04:11:06,566 --> 04:11:09,336 THEY WANT TO HEAR THE PATIENT 6505 04:11:09,336 --> 04:11:10,337 STORY. 6506 04:11:10,337 --> 04:11:12,639 WHEN WE GOT APPROVAL FOR THE 6507 04:11:12,639 --> 04:11:14,774 FIRST THERAPY FOR DUCHENNE 6508 04:11:14,774 --> 04:11:15,775 MUSCULAR DYSTROPHY WE HAD 100 6509 04:11:15,775 --> 04:11:17,577 PATIENTS THAT SHOWED UP TO THE 6510 04:11:17,577 --> 04:11:18,745 ADVISORY COMMITTEE AND THEY ALL 6511 04:11:18,745 --> 04:11:20,046 WANTED TO TALK. 6512 04:11:20,046 --> 04:11:21,314 WHAT A DIFFERENCE! 6513 04:11:21,314 --> 04:11:23,350 THE REASON THAT DRUG GOT 6514 04:11:23,350 --> 04:11:25,619 APPROVED, THE PATIENTS TOLD 6515 04:11:25,619 --> 04:11:26,353 THEIR STORY. 6516 04:11:26,353 --> 04:11:28,555 THE OTHER GROUP, I HAD NEVER 6517 04:11:28,555 --> 04:11:30,123 THOUGHT ABOUT, BUT IT OCCURRED 6518 04:11:30,123 --> 04:11:33,293 TO ME WE WERE AT JP MORGAN, ONE 6519 04:11:33,293 --> 04:11:34,794 OF THE BIG PARTS OF RUNNING A 6520 04:11:34,794 --> 04:11:38,298 COMPANY YOU HAVE TO RAISE MONEY. 6521 04:11:38,298 --> 04:11:42,435 SO WE HAD AN APPOINTMENT WITH 6522 04:11:42,435 --> 04:11:44,070 ONE OF THE PREMIER VENTURE 6523 04:11:44,070 --> 04:11:44,838 CAPITAL FIRMS. 6524 04:11:44,838 --> 04:11:46,573 HE CAME IN, HE WAS TALKING TO 6525 04:11:46,573 --> 04:11:47,140 ME. 6526 04:11:47,140 --> 04:11:48,508 HE SAID THE REASON I WANT TO 6527 04:11:48,508 --> 04:11:53,246 TALK TO YOU IS A FRIEND OF MINE 6528 04:11:53,246 --> 04:11:54,748 SAID, WHO HAS DRAVET SYNDROME, 6529 04:11:54,748 --> 04:11:56,650 ONE OF HER CHILDREN, THE DRUG 6530 04:11:56,650 --> 04:12:01,788 THAT YOU'RE DEVELOPING IS 6531 04:12:01,788 --> 04:12:02,022 AMAZING. 6532 04:12:02,022 --> 04:12:04,124 HE INVESTED $40 MILLION BECAUSE 6533 04:12:04,124 --> 04:12:04,891 OF HIS FRIEND. 6534 04:12:04,891 --> 04:12:06,893 YOU HAVE TO REMEMBER THERE'S A 6535 04:12:06,893 --> 04:12:11,298 MUCH BROADER AUDIENCE THAN JUST 6536 04:12:11,298 --> 04:12:15,835 THE SCIENTISTS OR POLICY PEOPLE. 6537 04:12:15,835 --> 04:12:19,272 THE OTHER EXAMPLE IS PAYERS. 6538 04:12:19,272 --> 04:12:20,840 DUCHENNE WAS AN EXPENSIVE 6539 04:12:20,840 --> 04:12:24,010 THERAPY, THERE WAS RESISTANCE TO 6540 04:12:24,010 --> 04:12:28,515 PAY FOR IT. 6541 04:12:28,515 --> 04:12:30,116 THE MOTHERS WENT AND PRESENTED 6542 04:12:30,116 --> 04:12:30,984 VIDEO. 6543 04:12:30,984 --> 04:12:34,988 NO ONE TURNS DOWN A MOTHER AND 6544 04:12:34,988 --> 04:12:36,423 SAYS I DON'T WANT TO PAY FOR 6545 04:12:36,423 --> 04:12:37,324 YOUR DRUG. 6546 04:12:37,324 --> 04:12:38,858 IT'S IMPORTANT TO EXPAND WHERE 6547 04:12:38,858 --> 04:12:39,793 YOU'RE GOING. 6548 04:12:39,793 --> 04:12:41,428 THE STORY IS POWERFUL BUT 6549 04:12:41,428 --> 04:12:44,164 AFFECTS A LOT OF PEOPLE, NOT 6550 04:12:44,164 --> 04:12:51,805 JUST IMMEDIATE PEOPLE, A LOT OF 6551 04:12:51,805 --> 04:12:52,172 PEOPLE. 6552 04:12:52,172 --> 04:12:53,306 >> I'M UP HERE BECAUSE SHE SAID 6553 04:12:53,306 --> 04:12:55,408 I HAD TO BE. 6554 04:12:55,408 --> 04:12:58,345 I'M OFFERING A FEW RESOURCES. 6555 04:12:58,345 --> 04:13:02,582 WE WERE BOTH AWARDEES FOR THE 6556 04:13:02,582 --> 04:13:03,950 CHAN ZUCKERBERG INITIATIVES. 6557 04:13:03,950 --> 04:13:07,220 ONE TRAINING WE HAD ACCESS 20 6558 04:13:07,220 --> 04:13:08,621 WAS STORY COLLIDER. 6559 04:13:08,621 --> 04:13:13,660 IT'S AVAILABLE TO THE PUBLIC. 6560 04:13:13,660 --> 04:13:14,794 THESE ARE PROFESSIONAL 6561 04:13:14,794 --> 04:13:15,962 STORY-TELLING TRAINER PEOPLE. 6562 04:13:15,962 --> 04:13:18,999 AND YOU CAN ONLINE SIGN UP 6563 04:13:18,999 --> 04:13:23,236 FOR -- I JUST CHECKED TO MAKE 6564 04:13:23,236 --> 04:13:25,338 SURE, FOUR 90-MINUTE SESSIONS OF 6565 04:13:25,338 --> 04:13:30,210 STORYTELLING COACHING IN A GROUP 6566 04:13:30,210 --> 04:13:32,112 ZOOM FOR $400, MONEY WELL SPENT 6567 04:13:32,112 --> 04:13:33,980 IF YOU HAVE PATIENTS WHO YOU 6568 04:13:33,980 --> 04:13:35,882 THINK ARE GOING TO BEING THE 6569 04:13:35,882 --> 04:13:38,952 FACE OF YOUR ORGANIZATION. 6570 04:13:38,952 --> 04:13:40,954 MORE ECONOMICALLY, TED TALKS 6571 04:13:40,954 --> 04:13:43,857 HAVE A MASTER CLASS ONLINE THAT 6572 04:13:43,857 --> 04:13:45,925 YOU CAN TAKE FOR $20. 6573 04:13:45,925 --> 04:13:47,427 WE HAVE SPONSORED MULTIPLE OF 6574 04:13:47,427 --> 04:13:50,530 OUR PATIENTS TO GO THROUGH THAT. 6575 04:13:50,530 --> 04:13:51,831 IT'S VIDEOS. 6576 04:13:51,831 --> 04:13:53,266 SNACKABLE VIDEOS, 5 TO 10 6577 04:13:53,266 --> 04:13:55,502 MINUTES, THERE'S 11 OF THEM. 6578 04:13:55,502 --> 04:13:57,871 IT GIVES A SENSE OF WHAT THE 6579 04:13:57,871 --> 04:13:59,672 STRUCTURE OF A GOOD STORY TALK 6580 04:13:59,672 --> 04:14:03,143 LOOKS LIKE, WHAT YOU SHOULD BE 6581 04:14:03,143 --> 04:14:05,078 FOCUSING ON, HOW DO YOU GET 6582 04:14:05,078 --> 04:14:05,745 THEMATIC. 6583 04:14:05,745 --> 04:14:08,481 AND THE LAST THING TO MENTION 6584 04:14:08,481 --> 04:14:10,550 REFLECTING ON INTRODUCING 6585 04:14:10,550 --> 04:14:11,684 INVESTIGATORS TO PATIENT 6586 04:14:11,684 --> 04:14:14,687 STORIES, WE STOLE ANOTHER IDEA 6587 04:14:14,687 --> 04:14:16,423 FROM CGI ORGANIZATION, TO HAVE 6588 04:14:16,423 --> 04:14:19,292 PATIENT POSTERS AT OUR POSTER 6589 04:14:19,292 --> 04:14:20,060 SESSION. 6590 04:14:20,060 --> 04:14:21,528 OUR POSTER SESSIONS ARE 6591 04:14:21,528 --> 04:14:22,729 INTEGRATED, PATIENTS HAVE 6592 04:14:22,729 --> 04:14:24,998 POSTERS THAT TELL THEIR STORIES. 6593 04:14:24,998 --> 04:14:27,367 ALSO THERE'S ALWAYS A BLURB THAT 6594 04:14:27,367 --> 04:14:29,903 SAYS WHAT WE WANT RESEARCHERS TO 6595 04:14:29,903 --> 04:14:30,303 KNOW. 6596 04:14:30,303 --> 04:14:31,938 AND THAT ALLOWS THE RESEARCHER 6597 04:14:31,938 --> 04:14:34,474 TO HEAR THE PRIORITY FOR THE 6598 04:14:34,474 --> 04:14:35,141 PATIENT. 6599 04:14:35,141 --> 04:14:38,745 AND IN THE SAME SESSIONS ARE THE 6600 04:14:38,745 --> 04:14:40,280 RESEARCHER POSTERS SO THE 6601 04:14:40,280 --> 04:14:41,514 PATIENTS HAVE THE OPPORTUNITY TO 6602 04:14:41,514 --> 04:14:43,316 SEE THE WORK THAT'S BEING DONE. 6603 04:14:43,316 --> 04:14:46,653 THANKS. 6604 04:14:46,653 --> 04:14:49,589 >> AND I'VE GOT ONE FINAL STORY. 6605 04:14:49,589 --> 04:14:53,560 I'D LIKE TO PUT IN A PERSONAL 6606 04:14:53,560 --> 04:14:55,762 PLUG FOR BEING EMOTIONALLY 6607 04:14:55,762 --> 04:14:56,162 AVAILABLE. 6608 04:14:56,162 --> 04:14:58,331 YOU ALL DEALT WITH THAT 6609 04:14:58,331 --> 04:14:59,299 POSSIBILITY, SOME OF ITS 6610 04:14:59,299 --> 04:14:59,732 DRAWBACKS. 6611 04:14:59,732 --> 04:15:02,302 I WOULD SAY BEING EMOTIONALLY 6612 04:15:02,302 --> 04:15:03,303 AVAILABLE IS POWERFUL. 6613 04:15:03,303 --> 04:15:05,538 IT'S A POWERFUL PART OF YOUR 6614 04:15:05,538 --> 04:15:06,072 STORY. 6615 04:15:06,072 --> 04:15:08,208 IT'S A POWERFUL PART OF YOUR 6616 04:15:08,208 --> 04:15:12,712 STORY FOR YOUR OWN FAMILIES. 6617 04:15:12,712 --> 04:15:13,947 THEY GET EMOTIONALLY INVESTED 6618 04:15:13,947 --> 04:15:16,149 WHEN THEY SEE YOU GET 6619 04:15:16,149 --> 04:15:16,616 EMOTIONALLY INVESTED. 6620 04:15:16,616 --> 04:15:18,284 THEY APPRECIATE AND UNDERSTAND 6621 04:15:18,284 --> 04:15:19,819 YOUR EMOTION. 6622 04:15:19,819 --> 04:15:22,755 AND THEY KNOW THEY ARE AMONGST 6623 04:15:22,755 --> 04:15:24,390 FAMILY WHEN YOU INVEST YOUR OWN 6624 04:15:24,390 --> 04:15:25,592 EMOTION IN THAT. 6625 04:15:25,592 --> 04:15:30,196 SO IT'S IMPORTANT FOR YOUR OWN 6626 04:15:30,196 --> 04:15:31,030 FAMILIES, IMPORTANT FOR 6627 04:15:31,030 --> 04:15:31,598 INVESTIGATORS. 6628 04:15:31,598 --> 04:15:35,502 HE WAS AT THE FDA FOR A 3-HOUR 6629 04:15:35,502 --> 04:15:36,636 ROUNDTABLE DISCUSSION 10 DAYS 6630 04:15:36,636 --> 04:15:36,936 AGO. 6631 04:15:36,936 --> 04:15:38,738 ONE OF THE WORLD'S LEADING GENE 6632 04:15:38,738 --> 04:15:40,306 EDITORS CAME UP TO ME AFTERWARDS 6633 04:15:40,306 --> 04:15:41,641 AROUND REMINDED ME OF THE STORY 6634 04:15:41,641 --> 04:15:43,476 HOW HE GOT INVOLVED IN OUR 6635 04:15:43,476 --> 04:15:48,481 DISEASE BECAUSE HE SAW ME GET 6636 04:15:48,481 --> 04:15:49,616 EMOTIONALLY INVOLVED IN A 6637 04:15:49,616 --> 04:15:51,251 MEETING HE WAS IN AT THE NIH. 6638 04:15:51,251 --> 04:15:54,521 HE SAID I THINK I CAN PUT MY 6639 04:15:54,521 --> 04:16:00,160 SKILLS TO WORK IN FRIEDRICH'S 6640 04:16:00,160 --> 04:16:00,393 ATAXIA. 6641 04:16:00,393 --> 04:16:05,365 IT'S IMPORTANT AS AN INSPIRATION 6642 04:16:05,365 --> 04:16:06,132 FOR YOUR COMPANIES. 6643 04:16:06,132 --> 04:16:08,201 WE'VE HAD A NUMBER DO GRAND 6644 04:16:08,201 --> 04:16:08,434 ROUNDS. 6645 04:16:08,434 --> 04:16:10,203 THEY WILL STAND AT THE DOOR AS 6646 04:16:10,203 --> 04:16:11,504 YOU'RE LEAVING AND SAY NOW I 6647 04:16:11,504 --> 04:16:13,540 KNOW WHY I COME TO WORK EVERY 6648 04:16:13,540 --> 04:16:18,077 DAY, SO YOU DON'T GET THAT 6649 04:16:18,077 --> 04:16:19,345 INVESTMENT AND COMMITMENT 6650 04:16:19,345 --> 04:16:20,513 WITHOUT BEING EMOTIONALLY 6651 04:16:20,513 --> 04:16:20,780 AVAILABLE. 6652 04:16:20,780 --> 04:16:23,550 TO THE POINT HOW DO YOU KEEP UP 6653 04:16:23,550 --> 04:16:26,119 YOUR OWN ABILITY TO TELL YOUR 6654 04:16:26,119 --> 04:16:30,523 STORY, I WOULD SAY YOUR STORY IS 6655 04:16:30,523 --> 04:16:32,725 ALSO INSPIRING YOURSELF. 6656 04:16:32,725 --> 04:16:35,895 AND MY FINAL STORY, ONE OF THE 6657 04:16:35,895 --> 04:16:37,330 FINAL CONVERSATIONS I HAD WITH 6658 04:16:37,330 --> 04:16:40,900 OUR SON KEITH, HE KNOW HE HAD 6659 04:16:40,900 --> 04:16:43,369 ONLY DAYS TO LIVE. 6660 04:16:43,369 --> 04:16:45,838 HE KNEW HE HAD DAYS TO LIVE I 6661 04:16:45,838 --> 04:16:47,607 KNELT BESIDE HIM IN HIS ROOM, IN 6662 04:16:47,607 --> 04:16:48,575 HIS CHAIR. 6663 04:16:48,575 --> 04:16:50,009 I SAID I WANT TO THANK YOU AND 6664 04:16:50,009 --> 04:16:51,277 MOM FOR TRYING TO DO EVERYTHING 6665 04:16:51,277 --> 04:16:52,545 YOU COULD FOR ME. 6666 04:16:52,545 --> 04:16:54,414 I KNOW YOU THOUGHT YOU MIGHT BE 6667 04:16:54,414 --> 04:16:56,416 IN TIME FOR ME, IT DIDN'T QUITE 6668 04:16:56,416 --> 04:16:57,483 WORK OUT. 6669 04:16:57,483 --> 04:16:58,651 BUT I KNOW YOU'LL KEEP GOING 6670 04:16:58,651 --> 04:16:59,686 UNTIL YOU GET IT. 6671 04:16:59,686 --> 04:17:03,056 YOU'LL BE IN TIME FOR SOME OF MY 6672 04:17:03,056 --> 04:17:03,289 BUDDIES. 6673 04:17:03,289 --> 04:17:05,625 SO ABOUT A MONTH AFTER WE GOT 6674 04:17:05,625 --> 04:17:06,693 OUR FIRST APPROVED TREATMENT, 6675 04:17:06,693 --> 04:17:09,729 THIS WAS LIKE 15 YEARS AFTER WE 6676 04:17:09,729 --> 04:17:12,732 LOST OUR SON, WE WENT TO LUNCH 6677 04:17:12,732 --> 04:17:14,934 WITH TWO FAMILIES LOCALLY. 6678 04:17:14,934 --> 04:17:19,539 THEY WERE BOTH BUDDIES, PATIENTS 6679 04:17:19,539 --> 04:17:21,841 WERE BUDDIES, FRIENDS OF OUR SON 6680 04:17:21,841 --> 04:17:23,376 KEITH. 6681 04:17:23,376 --> 04:17:24,043 THEY HAD THEIR SKYCLARIS WITH 6682 04:17:24,043 --> 04:17:25,511 THEM AT THE MEAL. 6683 04:17:25,511 --> 04:17:27,647 YOU KNEW YOU WERE HONORING THAT 6684 04:17:27,647 --> 04:17:29,916 PLEDGE TO YOUR SON TO KEEP GOING 6685 04:17:29,916 --> 04:17:31,150 UNTIL YOU GET IT. 6686 04:17:31,150 --> 04:17:41,294 SO ..., 6687 04:17:43,463 --> 04:17:45,898 >> I'LL BE QUICK. 6688 04:17:45,898 --> 04:17:50,703 CHRISTINE CONDRA, THE B 6689 04:17:50,703 --> 04:17:53,172 FOUNDATION, WE LOST MY COUSIN 6690 04:17:53,172 --> 04:17:55,608 JENNY, A SISTER ON ERIN AND I, 6691 04:17:55,608 --> 04:17:56,809 ON CHRISTMAS DAY. 6692 04:17:56,809 --> 04:17:58,978 IT'S BEEN A JOURNEY WE NEVER 6693 04:17:58,978 --> 04:18:00,880 THOUGHT WE WOULD BE ON. 6694 04:18:00,880 --> 04:18:02,215 WE THOUGHT WE WOULD BE HAVING 6695 04:18:02,215 --> 04:18:03,116 KIDS TOGETHER. 6696 04:18:03,116 --> 04:18:04,284 WE THOUGHT WE WOULD BE HAVING 6697 04:18:04,284 --> 04:18:05,718 GLASSES OF WINE TOGETHER. 6698 04:18:05,718 --> 04:18:07,353 SHE WANTED TO MARRIED IN SONOMA. 6699 04:18:07,353 --> 04:18:12,325 WE LIVE IN THE PHILADELPHIA 6700 04:18:12,325 --> 04:18:14,427 AREA, OUR MOTHER WAS A 6701 04:18:14,427 --> 04:18:15,828 RESEARCHER AT NIH. 6702 04:18:15,828 --> 04:18:17,330 I WAS BORN IN D.C. 6703 04:18:17,330 --> 04:18:19,332 ONE THING THAT CONNECTED TO US 6704 04:18:19,332 --> 04:18:21,267 IS SOMETHING THAT'S REAL AND RAW 6705 04:18:21,267 --> 04:18:24,037 WE DON'T TELL OUR REAL STORY. 6706 04:18:24,037 --> 04:18:26,139 WE TELL THIS STORY, WE'VE BEEN 6707 04:18:26,139 --> 04:18:31,110 ON THE HILL FOR 11 YEARS 6708 04:18:31,110 --> 04:18:32,645 REPRESENTED PRO BONO, I'M HERE 6709 04:18:32,645 --> 04:18:41,921 ONCE A MONTH, MEETING WITH DR. 6710 04:18:41,921 --> 04:18:44,524 KOROSHETZ FOR 8 OR 9 YEARS. 6711 04:18:44,524 --> 04:18:49,696 I SPENT 10 YEARS IN BIOTECH AND 6712 04:18:49,696 --> 04:18:51,331 BIOPHARMA, ONCOLOGY AND 6713 04:18:51,331 --> 04:18:53,066 HEMATOLOGY, YOU GO IN, EVERYBODY 6714 04:18:53,066 --> 04:18:55,001 SAYS I'M SO SORRY, I'M SO SORRY. 6715 04:18:55,001 --> 04:18:56,502 YOU'RE LIKE, I'M GOOD, I'M GOOD, 6716 04:18:56,502 --> 04:18:58,071 I'M GOOD. 6717 04:18:58,071 --> 04:18:59,739 THAT ALSO TRANSLATES NOT IN 6718 04:18:59,739 --> 04:19:01,941 ALWAYS THE BEST WAY OF THERE'S 6719 04:19:01,941 --> 04:19:05,311 THIS BIT OF CALLOUSNESS TO US. 6720 04:19:05,311 --> 04:19:07,046 YOU'RE WALKING A FINE LINE 6721 04:19:07,046 --> 04:19:09,015 TELLING THE RIGHT STORY, OF 6722 04:19:09,015 --> 04:19:11,551 BEING EFFECTIVE BUT NOT SAYING, 6723 04:19:11,551 --> 04:19:15,054 WELL, YOU'RE THE WOUNDED BIRD IN 6724 04:19:15,054 --> 04:19:16,356 THE COCKTAIL PARTY. 6725 04:19:16,356 --> 04:19:17,390 EVERYONE IS LIKE, WAIT, WHAT DO 6726 04:19:17,390 --> 04:19:19,492 YOU DO? 6727 04:19:19,492 --> 04:19:20,793 AND KEEPING EVERYTHING POSITIVE. 6728 04:19:20,793 --> 04:19:22,261 ONE THING FOR US PEOPLE SAID 6729 04:19:22,261 --> 04:19:26,866 WHEN THEY GO TO OUR WEBSITE AND 6730 04:19:26,866 --> 04:19:32,372 WE HAVE AN ENTIRE "SHARE YOUR 6731 04:19:32,372 --> 04:19:33,740 STORY," CRAFTING THE RIGHT STORY 6732 04:19:33,740 --> 04:19:36,142 IS ALSO VERY IMPORTANT BUT WE 6733 04:19:36,142 --> 04:19:36,642 GIVE EVERYBODY HOPE. 6734 04:19:36,642 --> 04:19:38,277 STORYTELLING IS ONE OF THE 6735 04:19:38,277 --> 04:19:40,313 BIGGEST THINGS, THERE'S HOPE. 6736 04:19:40,313 --> 04:19:41,581 IT'S NOT JUST LOOKING AT 6737 04:19:41,581 --> 04:19:43,983 SOMETHING THAT'S TALKING ABOUT 6738 04:19:43,983 --> 04:19:45,752 THE MEDICAL SCIENCES, FOR US 6739 04:19:45,752 --> 04:19:48,054 EVERYTHING THAT COULD GO WRONG 6740 04:19:48,054 --> 04:19:49,889 WITH JENNY WENT WRONG, OUR 6741 04:19:49,889 --> 04:19:51,090 COUSIN THAT PASSED. 6742 04:19:51,090 --> 04:19:54,460 I'VE SAT IN CONGRESSMEN AND 6743 04:19:54,460 --> 04:19:58,664 WOMEN'S OFFICES, SENATORS, EVERY 6744 04:19:58,664 --> 04:20:01,634 WHERE, THEY ARE FLABBERGASTED 6745 04:20:01,634 --> 04:20:03,970 WHY WE'RE HERE IN 2025. 6746 04:20:03,970 --> 04:20:06,305 WE FOCUSED ON RESEARCH, OUR 6747 04:20:06,305 --> 04:20:08,040 PILLAR, HOW DO WE PREVENT THIS 6748 04:20:08,040 --> 04:20:11,177 TO THE POINT WHERE WE'VE LOOKED 6749 04:20:11,177 --> 04:20:13,379 AT SO MUCH OF THE ECONOMIC COST 6750 04:20:13,379 --> 04:20:20,586 ON THE HEALTH, PUBLIC HEALTH OF 6751 04:20:20,586 --> 04:20:22,255 ANEURYSMS, ASTRONOMICAL, 6752 04:20:22,255 --> 04:20:22,855 PRE-VERSUS POST-RUPTURE. 6753 04:20:22,855 --> 04:20:26,526 IN 2019 I WAS HERE, EVERY YEAR 6754 04:20:26,526 --> 04:20:28,594 I'M BLOWN AWAY, CONSTANTLY 6755 04:20:28,594 --> 04:20:30,363 WRITING, HAVE IDEAS FROM THIS, A 6756 04:20:30,363 --> 04:20:32,231 BIG CONVERSATION AT THE 4:00 6757 04:20:32,231 --> 04:20:34,667 SESSION WAS ABOUT HOW DO WE 6758 04:20:34,667 --> 04:20:36,169 ENGAGE RESEARCHERS. 6759 04:20:36,169 --> 04:20:38,771 AND HOW DO WE HAVE THESE YOUNG 6760 04:20:38,771 --> 04:20:39,839 RESEARCHERS FEEL A PART OF 6761 04:20:39,839 --> 04:20:41,407 EVERYTHING. 6762 04:20:41,407 --> 04:20:42,208 ONE OF THE BIGGEST THINGS WAS 6763 04:20:42,208 --> 04:20:44,076 THEY HAVE TO FEEL LIKE THEY ARE 6764 04:20:44,076 --> 04:20:45,812 PART OF A FAMILY, LIKE THEY ARE 6765 04:20:45,812 --> 04:20:56,155 PART OF -- I THINK IT WAS THE 6766 04:20:56,155 --> 04:20:57,256 MDS ORGANIZATION. 6767 04:20:57,256 --> 04:20:59,025 ONE THING WE HAD ALWAYS DONE AS 6768 04:20:59,025 --> 04:21:01,394 A RESEARCHER AT THE B FOUNDATION 6769 04:21:01,394 --> 04:21:05,932 THAT YOU THEN HAVE TO PRESENT -- 6770 04:21:05,932 --> 04:21:07,567 YOUR AWARD IS PRESENTED BUT YOU 6771 04:21:07,567 --> 04:21:08,835 HAVE TO COME BACK THE FOLLOWING 6772 04:21:08,835 --> 04:21:10,837 YEAR AND GIVE ALL YOUR STUDIES. 6773 04:21:10,837 --> 04:21:11,971 THAT FAMILY COMES UP. 6774 04:21:11,971 --> 04:21:14,140 WE PRESENT NOW PICTURES OF THE 6775 04:21:14,140 --> 04:21:15,675 ENTIRE FAMILIES OF WHO THAT 6776 04:21:15,675 --> 04:21:18,077 GRANT IS NOW GOING TO, WHO IS 6777 04:21:18,077 --> 04:21:19,545 AFFECTED. 6778 04:21:19,545 --> 04:21:20,613 WE HAVE USUALLY ANYWHERE FROM 6779 04:21:20,613 --> 04:21:22,148 THREE TO FIVE GRANTS OF WHERE 6780 04:21:22,148 --> 04:21:23,983 THAT MONEY IS GOING TOWARDS. 6781 04:21:23,983 --> 04:21:31,224 AND THE FAMILIES ACTUALLY COME 6782 04:21:31,224 --> 04:21:33,025 UP WITH LOVED ONES, MOST 6783 04:21:33,025 --> 04:21:35,461 DECEASED, THIS IS WHO THIS WAS 6784 04:21:35,461 --> 04:21:35,628 FOR. 6785 04:21:35,628 --> 04:21:37,430 RESEARCHERS SAY I HAVE THIS ON 6786 04:21:37,430 --> 04:21:41,234 MY DESK, WHEN I COME BACK FROM 6787 04:21:41,234 --> 04:21:42,702 THE LAB I LOOK AT THE PERSON, 6788 04:21:42,702 --> 04:21:44,403 THAT'S WHAT I'M DOING. 6789 04:21:44,403 --> 04:21:45,238 SOMETHING WE'VE CREATED. 6790 04:21:45,238 --> 04:21:48,207 PEOPLE ARE PROUD TO BE IN THIS 6791 04:21:48,207 --> 04:21:54,814 THING, WE CALL IT THE HIVE. 6792 04:21:54,814 --> 04:21:57,116 WE HAVE OUR SAB, SOME TOP 6793 04:21:57,116 --> 04:22:00,019 VASCULAR NEUROSURGEONS IN THE 6794 04:22:00,019 --> 04:22:01,554 WORLD ON OUR SCIENTIFIC ADVISORY 6795 04:22:01,554 --> 04:22:03,556 BOARD, AND THE JUNIOR GUYS ARE 6796 04:22:03,556 --> 04:22:05,258 NOT JUNIOR AFTER 12 YEARS, 6797 04:22:05,258 --> 04:22:08,461 RISING UP AND TELLING THE 6798 04:22:08,461 --> 04:22:10,096 YOUNGER GENERATION, YOU HAVE TO 6799 04:22:10,096 --> 04:22:11,764 BE INVOLVED TO BE PART OF THE 6800 04:22:11,764 --> 04:22:11,998 FAMILY. 6801 04:22:11,998 --> 04:22:15,935 THAT'S A STORY IN AND OF ITSELF, 6802 04:22:15,935 --> 04:22:17,069 SOMETHING THAT WORKED REALLY 6803 04:22:17,069 --> 04:22:22,608 WELL FOR US TO CREATE THIS 6804 04:22:22,608 --> 04:22:23,910 INCLUSIVE FAMILY OF BEING A PART 6805 04:22:23,910 --> 04:22:26,245 OF SOMETHING AND MAKING A 6806 04:22:26,245 --> 04:22:27,713 DIFFERENCE SAVING LIVES FOR 6807 04:22:27,713 --> 04:22:28,114 PEOPLE. 6808 04:22:28,114 --> 04:22:34,854 THANK YOU. . 6809 04:22:34,854 --> 04:22:38,157 >> THESE STORIES HAVE BEEN 6810 04:22:38,157 --> 04:22:38,391 AMAZING. 6811 04:22:38,391 --> 04:22:40,960 IT'S HARD FOR ME TO SAY ANYTHING 6812 04:22:40,960 --> 04:22:44,196 IMPORTANT THAT HASN'T BEEN SAID, 6813 04:22:44,196 --> 04:22:47,099 EXCEPT TO REMIND EVERYONE THERE 6814 04:22:47,099 --> 04:22:50,236 ARE ALSO GOOD STORIES, STORIES 6815 04:22:50,236 --> 04:22:51,237 OF SUCCESS. 6816 04:22:51,237 --> 04:22:53,940 MY PERSONAL ONE I ALLUDED TO A 6817 04:22:53,940 --> 04:22:59,812 BIT THIS MORNING, HAVING A 6818 04:22:59,812 --> 04:23:01,314 GRANDSON WHO HAS BEEN 6819 04:23:01,314 --> 04:23:03,583 SUCCESSFULLY TREATED MUCH OF HIS 6820 04:23:03,583 --> 04:23:07,987 LIFE WITH A DRUG THAT I HELPED 6821 04:23:07,987 --> 04:23:09,689 DEVELOP. 6822 04:23:09,689 --> 04:23:12,692 WHEN I MEET WITH POLICYMAKERS, 6823 04:23:12,692 --> 04:23:16,862 WHEN I MEET WITH PEOPLE AT THE 6824 04:23:16,862 --> 04:23:18,030 STATE, FEDERAL LEVEL, THEY 6825 04:23:18,030 --> 04:23:19,999 UNDERSTAND THESE STORIES. 6826 04:23:19,999 --> 04:23:21,667 THEY DON'T UNDERSTAND BUDGETS. 6827 04:23:21,667 --> 04:23:25,071 THEY DON'T CARE TO HEAR ABOUT, 6828 04:23:25,071 --> 04:23:29,342 YOU KNOW, PEOPLE WHO DIE AND 6829 04:23:29,342 --> 04:23:32,044 THINGS, ALTHOUGH THEY REALLY 6830 04:23:32,044 --> 04:23:33,913 WANT TO HEAR THAT RESEARCH 6831 04:23:33,913 --> 04:23:36,549 ACTUALLY CAN PRODUCE SOMETHING. 6832 04:23:36,549 --> 04:23:42,855 WHEN I TELL THEM HOW THE GAUCHER 6833 04:23:42,855 --> 04:23:43,723 TREATMENT STARTED AT NIH, 6834 04:23:43,723 --> 04:23:49,962 DEVELOPED BY A COMPANY IN 6835 04:23:49,962 --> 04:23:52,665 BOSTON, AND HOW NIH-SUPPORTED 6836 04:23:52,665 --> 04:23:53,966 RESEARCH ON GENETIC 6837 04:23:53,966 --> 04:23:56,035 UNDERSTANDING OF GAUCHER ALLOWED 6838 04:23:56,035 --> 04:23:59,805 US TO DECIDE WHETHER OR NOT OUR 6839 04:23:59,805 --> 04:24:01,974 GRANDSON'S DISEASE WOULD AFFECT 6840 04:24:01,974 --> 04:24:07,847 THE CENTRAL NERVOUS SYSTEM, YOU 6841 04:24:07,847 --> 04:24:09,315 SEE, THEY UNDERSTAND THAT. 6842 04:24:09,315 --> 04:24:12,652 I THINK WHAT YOU SAID THIS 6843 04:24:12,652 --> 04:24:16,722 AFTERNOON IS VERY IMPORTANT. 6844 04:24:16,722 --> 04:24:20,526 AND I WISH MANY MORE OF MY 6845 04:24:20,526 --> 04:24:21,961 SCIENTIFIC COLLEAGUES COULD 6846 04:24:21,961 --> 04:24:25,364 LEARN TO TELL STORIES LIKE THIS 6847 04:24:25,364 --> 04:24:28,200 BECAUSE THAT'S WHAT WE NEED 6848 04:24:28,200 --> 04:24:30,670 RIGHT NOW WITH OUR LEGISLATURES 6849 04:24:30,670 --> 04:24:33,372 AND POLICYMAKERS TO MAKE THEM 6850 04:24:33,372 --> 04:24:36,709 REALLY UNDERSTAND, WHICH THEY 6851 04:24:36,709 --> 04:24:37,643 DON'T, HOW IMPORTANT THE 6852 04:24:37,643 --> 04:24:42,181 BIOMEDICAL RESEARCH IS THAT WE 6853 04:24:42,181 --> 04:24:42,348 DO. 6854 04:24:42,348 --> 04:24:44,750 AND IT'S THROUGH THESE STORIES. 6855 04:24:44,750 --> 04:24:47,153 >> I WOULD LOVE TO FOLLOW THAT 6856 04:24:47,153 --> 04:24:48,921 BECAUSE I THINK IT'S ABSOLUTELY 6857 04:24:48,921 --> 04:24:51,724 RIGHT THAT WE NEED TO COMBINE 6858 04:24:51,724 --> 04:24:53,125 OUR EMOTIONAL STORIES WITH THE 6859 04:24:53,125 --> 04:24:54,894 GOOD RESULTS THAT SOMETIMES 6860 04:24:54,894 --> 04:24:57,630 WE'RE ABLE TO ACCOMPLISH. 6861 04:24:57,630 --> 04:25:01,434 AND ANOTHER KEY AUDIENCE IN THAT 6862 04:25:01,434 --> 04:25:03,169 IS, AS THE LAST SPEAKER 6863 04:25:03,169 --> 04:25:04,603 INDICATED, CONGRESSIONAL STAFF 6864 04:25:04,603 --> 04:25:05,604 AND CONGRESSIONAL MEMBERS WHO 6865 04:25:05,604 --> 04:25:08,040 THERE'S NEVER BEEN A MORE 6866 04:25:08,040 --> 04:25:09,375 IMPORTANT TIME FOR US. 6867 04:25:09,375 --> 04:25:11,510 THERE'S A LIMIT TO WHAT WE CAN 6868 04:25:11,510 --> 04:25:15,114 SAY HERE TODAY GIVEN THE 6869 04:25:15,114 --> 04:25:16,315 AUDIENCE, OR OUR SPONSORS, BUT 6870 04:25:16,315 --> 04:25:17,416 THERE'S NEVER BEEN A MORE 6871 04:25:17,416 --> 04:25:19,385 IMPORTANT TIME FOR US TO 6872 04:25:19,385 --> 04:25:19,985 ADVOCATE. 6873 04:25:19,985 --> 04:25:22,054 PARTNERSHIP IS A TWO-WAY STREET. 6874 04:25:22,054 --> 04:25:24,090 LOOK AT WHAT NINDS AND NIH ARE 6875 04:25:24,090 --> 04:25:26,625 DOING FOR US. 6876 04:25:26,625 --> 04:25:30,262 WE NEED TO DO FOR THEM. 6877 04:25:30,262 --> 04:25:31,130 WE NEED ADVOCATE. 6878 04:25:31,130 --> 04:25:35,034 THEIR BUDGET IS UNDER SERIOUS 6879 04:25:35,034 --> 04:25:35,501 CONSTRAINT. 6880 04:25:35,501 --> 04:25:37,069 FRAUGHT WITH DANGERS OVER THE 6881 04:25:37,069 --> 04:25:38,471 NEXT SIX MONTHS. 6882 04:25:38,471 --> 04:25:39,905 SO, THERE'S NEVER BEEN A MORE 6883 04:25:39,905 --> 04:25:41,941 IMPORTANT TIME FOR US TO JOIN 6884 04:25:41,941 --> 04:25:44,944 OUR VOICES, JOIN OUR EMOTIONS, 6885 04:25:44,944 --> 04:25:46,979 TO ADVOCATE FOR THIS WONDERFUL 6886 04:25:46,979 --> 04:25:49,582 SCIENCE BEING FUNDED OUT OF THIS 6887 04:25:49,582 --> 04:25:52,318 INSTITUTE. 6888 04:25:52,318 --> 04:25:58,491 AND TO DO IT NOW. 6889 04:25:58,491 --> 04:25:58,958 OKAY. 6890 04:25:58,958 --> 04:26:05,765 LET'S GET TOGETHER, RAISE OUR 6891 04:26:05,765 --> 04:26:06,665 VOICES, TOGETHER WE'RE 6892 04:26:06,665 --> 04:26:12,004 UNCOMMONLY STRONG ALTHOUGH WE'RE 6893 04:26:12,004 --> 04:26:14,406 RARE. 6894 04:26:14,406 --> 04:26:15,441 >> LAUREN, ASSOCIATION FOR 6895 04:26:15,441 --> 04:26:16,242 FRONTOTEMPORAL ASSOCIATION. 6896 04:26:16,242 --> 04:26:17,710 I DIDN'T COME CLOSE TO THINKING 6897 04:26:17,710 --> 04:26:20,579 I WOULD SAY ANYTHING TODAY. 6898 04:26:20,579 --> 04:26:22,982 I FEEL STRESSED BY YOUR IDEA OF 6899 04:26:22,982 --> 04:26:24,683 STORY FATIGUE, I'VE BEEN THERE 6900 04:26:24,683 --> 04:26:28,154 AND DIDN'T KNOW I WAS THERE. 6901 04:26:28,154 --> 04:26:32,591 MY MOM PASSED OF FTD, AFFECTING 6902 04:26:32,591 --> 04:26:35,561 PEOPLE UNDER 60 LAST YEAR. 6903 04:26:35,561 --> 04:26:38,664 WHAT'S INTERESTING I WAS TELLING 6904 04:26:38,664 --> 04:26:40,566 HER STORY AND OUR STORY FOR SO 6905 04:26:40,566 --> 04:26:42,001 LONG BEFORE SHE PASSED BECAUSE 6906 04:26:42,001 --> 04:26:45,404 SHE COULDN'T SPEAK FOR HERSELF. 6907 04:26:45,404 --> 04:26:47,106 SHE LOOKED DIFFERENT, WOULD SHE 6908 04:26:47,106 --> 04:26:48,774 WANT HER PICTURE ONLINE, WOULD 6909 04:26:48,774 --> 04:26:53,179 SHE WANT REALITIES OF WHAT FTD 6910 04:26:53,179 --> 04:26:53,979 DID DISPLAYED? 6911 04:26:53,979 --> 04:26:55,581 IT'S MY EXPERIENCE BUT HERS TOO 6912 04:26:55,581 --> 04:26:57,616 AND WOULD AFFECT HER IMAGE. 6913 04:26:57,616 --> 04:27:00,953 WHAT DO I DO NOW THAT SHE'S 6914 04:27:00,953 --> 04:27:02,988 PASSED, FINDING A WAY TO 6915 04:27:02,988 --> 04:27:06,792 CONTINUE TO TELL HER STORY IN A 6916 04:27:06,792 --> 04:27:07,960 FIVE-MINUTE HILL MEETING IS 6917 04:27:07,960 --> 04:27:09,895 REALLY TOUGH BECAUSE IT'S THE 6918 04:27:09,895 --> 04:27:12,998 LITTLE THINGS THAT ARE MOST 6919 04:27:12,998 --> 04:27:13,766 IMPACTFUL. 6920 04:27:13,766 --> 04:27:15,167 THE 16th BIRTHDAYS, IT'S 6921 04:27:15,167 --> 04:27:17,369 TRYING TO GET MY DRIVER'S 6922 04:27:17,369 --> 04:27:20,005 LICENSE, I'M THE ONE THAT PUTS 6923 04:27:20,005 --> 04:27:22,741 EVERYBODY TO BED AT NIGHT IN THE 6924 04:27:22,741 --> 04:27:24,810 HOUSE BUT YOU CAN'T GET THERE. 6925 04:27:24,810 --> 04:27:26,979 I DON'T HAVE A SOLUTION PER SE 6926 04:27:26,979 --> 04:27:29,748 JUST TO VALIDATE THAT'S A 6927 04:27:29,748 --> 04:27:31,116 REALLY -- IT'S A REAL THING AND 6928 04:27:31,116 --> 04:27:32,384 DOES GIVE PEOPLE HOPE. 6929 04:27:32,384 --> 04:27:34,987 RIGHT NOW THERE ARE NO 6930 04:27:34,987 --> 04:27:36,255 INTERVENTIONS FOR FTD, NO CURES. 6931 04:27:36,255 --> 04:27:38,157 WHEN WE LOOK TO OUR COMMUNITY 6932 04:27:38,157 --> 04:27:40,226 AND WE'RE LIKE, OKAY, LET'S 6933 04:27:40,226 --> 04:27:41,227 GATHER COMPELLING STORIES, WHY 6934 04:27:41,227 --> 04:27:43,429 ARE WE GOING TO TAKE THE STORIES 6935 04:27:43,429 --> 04:27:44,496 FROM PEOPLE WHEN WE CAN'T GIVE 6936 04:27:44,496 --> 04:27:46,899 THEM ANYTHING IN RETURN? 6937 04:27:46,899 --> 04:27:48,767 WE CAN'T GIVE THEM HOPE YET. 6938 04:27:48,767 --> 04:27:50,502 RIGHT NOW WE HAVE A STRONG 6939 04:27:50,502 --> 04:27:51,971 COMMUNITY OF A FEW PEOPLE WITH 6940 04:27:51,971 --> 04:27:54,273 LIVED EXPERIENCE THAT ARE 6941 04:27:54,273 --> 04:27:55,708 TELLING THEIR STORIES AND 6942 04:27:55,708 --> 04:27:57,176 CAREGIVERS ARE TELLING THEIR 6943 04:27:57,176 --> 04:27:58,744 STORIES, PEOPLE LIKE ME, LIKE 6944 04:27:58,744 --> 04:28:00,946 YOU ALL, TELLING YOUR STORIES, 6945 04:28:00,946 --> 04:28:02,615 SUFFERING THROUGH THE STORY 6946 04:28:02,615 --> 04:28:04,149 FATIGUE BECAUSE PRETTY SOON 6947 04:28:04,149 --> 04:28:05,251 OTHER PEOPLE'S STORIES WILL 6948 04:28:05,251 --> 04:28:09,622 PROVIDE THAT MUCH MORE HOPE AND 6949 04:28:09,622 --> 04:28:12,157 REAL SOLUTIONS FOR PEOPLE. 6950 04:28:12,157 --> 04:28:15,561 >> VERY QUICKLY, FIRST OF ALL, 6951 04:28:15,561 --> 04:28:17,296 TOWARD YOUR POINT, AT THE 6952 04:28:17,296 --> 04:28:19,431 AMERICAN BRAIN -- SOCIETY FOR 6953 04:28:19,431 --> 04:28:21,901 NEUROSCIENCE LAST YEAR THE 6954 04:28:21,901 --> 04:28:24,136 AMERICAN BRAIN COALITION 6955 04:28:24,136 --> 04:28:25,671 ORGANIZED A SESSION ON 6956 04:28:25,671 --> 04:28:28,140 STORYTELLING, NOT FOR DISEASE 6957 04:28:28,140 --> 04:28:28,974 ADVOCATES BUT FOR 6958 04:28:28,974 --> 04:28:30,342 NEUROSCIENTISTS WHO SHOULD BE 6959 04:28:30,342 --> 04:28:33,712 ABLE TO TELL IN A SIMPLE WAY 6960 04:28:33,712 --> 04:28:37,216 WHAT THEY DO AND HOW THEY DO IT. 6961 04:28:37,216 --> 04:28:41,153 AND THEN THE SECOND POINT, I 6962 04:28:41,153 --> 04:28:42,254 MADE THIS POINT YESTERDAY AT THE 6963 04:28:42,254 --> 04:28:44,456 BRIEFING ON THE HILL, IT'S NOT 6964 04:28:44,456 --> 04:28:45,457 JUST POLICYMAKERS. 6965 04:28:45,457 --> 04:28:46,825 THEY HEAR US ALL THE TIME. 6966 04:28:46,825 --> 04:28:48,694 IT'S THE PERSON NEXT TO YOU IN 6967 04:28:48,694 --> 04:28:51,764 THE BAR, ON THE BUS, ON THE 6968 04:28:51,764 --> 04:28:51,964 PLANE. 6969 04:28:51,964 --> 04:28:55,901 WE ALL HAVE TO BE ADVOCATES FOR 6970 04:28:55,901 --> 04:28:57,736 THE IMPORTANCE OF SCIENCE AND 6971 04:28:57,736 --> 04:28:59,471 HOW IT AFFECTS HEALTH. 6972 04:28:59,471 --> 04:29:02,041 AND WE ALL HAVE TO TELL THOSE 6973 04:29:02,041 --> 04:29:04,243 STORIES NOT JUST TO MEMBERS OF 6974 04:29:04,243 --> 04:29:06,812 CONGRESS AND STAFF BUT TO 6975 04:29:06,812 --> 04:29:08,013 EVERYONE WE MEET. 6976 04:29:08,013 --> 04:29:09,982 LET THEM KNOW WHY THIS IS 6977 04:29:09,982 --> 04:29:10,382 IMPORTANT. 6978 04:29:10,382 --> 04:29:13,986 I WAS JUST SAYING TO KATIE AND 6979 04:29:13,986 --> 04:29:16,422 SHEILA WE HAVE AMERICAN BRAIN 6980 04:29:16,422 --> 04:29:17,089 COALITION PINS, WONDERFUL 6981 04:29:17,089 --> 04:29:18,190 BECAUSE SOMEONE WILL SAY WHAT 6982 04:29:18,190 --> 04:29:19,792 THE HELL IS THAT? 6983 04:29:19,792 --> 04:29:24,163 WE CAN SAY LET ME TELL YOU MY 6984 04:29:24,163 --> 04:29:26,332 STORY. 6985 04:29:26,332 --> 04:29:27,299 >> SUCH A POWERFUL SESSION. 6986 04:29:27,299 --> 04:29:29,335 I FEEL LIKE WE COULD HAVE HAD 6987 04:29:29,335 --> 04:29:30,436 EVERYONE IN THE ROOM UP HERE 6988 04:29:30,436 --> 04:29:31,837 WITH US. 6989 04:29:31,837 --> 04:29:33,505 THANK YOU FOR SHARING ALL OF 6990 04:29:33,505 --> 04:29:34,473 THAT. 6991 04:29:34,473 --> 04:29:36,041 ALL OF THE INPUT. 6992 04:29:36,041 --> 04:29:41,046 I TOOK A LOT AWAY FROM THAT. 6993 04:29:41,046 --> 04:29:43,082 IN CLOSING, I THINK REMINDER 6994 04:29:43,082 --> 04:29:44,049 THAT STORIES ARE NOT A SOFT 6995 04:29:44,049 --> 04:29:46,352 SKILL AS WE HEARD FROM EVERYONE 6996 04:29:46,352 --> 04:29:47,186 HERE TODAY. 6997 04:29:47,186 --> 04:29:49,021 THERE'S A STRATEGIC TOOL TO 6998 04:29:49,021 --> 04:29:51,724 DRIVE THE MISSION OF ALL OF OUR 6999 04:29:51,724 --> 04:29:51,957 WORK. 7000 04:29:51,957 --> 04:29:54,360 BUT MOST IMPORTANTLY THEY GIVE 7001 04:29:54,360 --> 04:29:57,730 US HOPE AND I THINK NOW IS NEVER 7002 04:29:57,730 --> 04:30:00,699 MORE IMPORTANT TIME TO SHARE 7003 04:30:00,699 --> 04:30:03,736 YOUR STORY, ENCOURAGE OTHERS AND 7004 04:30:03,736 --> 04:30:04,803 EMPOWER YOUR COMMUNITIES TO 7005 04:30:04,803 --> 04:30:06,438 SHARE STORIES. 7006 04:30:06,438 --> 04:30:15,681 THANK YOU SO MUCH. 7007 04:30:15,681 --> 04:30:17,249 >> THAT WAS REALLY FANTASTIC. 7008 04:30:17,249 --> 04:30:20,786 WE CAME FULL SWING, RIGHT? 7009 04:30:20,786 --> 04:30:24,356 STARTED WITH A POWERFUL STORY, 7010 04:30:24,356 --> 04:30:25,791 FROM THE CONGRESSWOMAN WEXTON 7011 04:30:25,791 --> 04:30:27,526 THIS MORNING, AND ENDED UP WITH 7012 04:30:27,526 --> 04:30:30,562 SOME GREAT STORIES HERE. 7013 04:30:30,562 --> 04:30:33,599 BUT EVERYBODY IN THE AUDIENCE 7014 04:30:33,599 --> 04:30:38,604 HAS THEIR OWN STORY. 7015 04:30:38,604 --> 04:30:40,172 AS A NEUROLOGIST, THERE'S A 7016 04:30:40,172 --> 04:30:43,442 NEUROLOGY BEHIND ALL THIS THAT 7017 04:30:43,442 --> 04:30:49,014 WE SHOULD THINK ABOUT. 7018 04:30:49,014 --> 04:30:51,550 A RECENT MEETING, WE ALL HAVE 7019 04:30:51,550 --> 04:30:56,055 THESE CIRCUITS IN OUR BRAIN 7020 04:30:56,055 --> 04:30:58,323 WHICH REALLY PRODUCE EMPATHY AND 7021 04:30:58,323 --> 04:30:58,657 COMPASSION. 7022 04:30:58,657 --> 04:31:01,193 BUT TO DEVELOP THAT YOU HAVE TO 7023 04:31:01,193 --> 04:31:05,230 BE EXPOSED TO SOMEONE WHO IS 7024 04:31:05,230 --> 04:31:05,631 SUFFERING. 7025 04:31:05,631 --> 04:31:07,199 SIMPLISTIC VIEW OF THINGS. 7026 04:31:07,199 --> 04:31:10,002 IF YOU DON'T PUT YOURSELF OUT 7027 04:31:10,002 --> 04:31:13,672 THERE, THE THINGS THAT DRIVE 7028 04:31:13,672 --> 04:31:15,340 MOTIVATION FOR PEOPLE TO HELP 7029 04:31:15,340 --> 04:31:16,809 DOESN'T HAPPEN. 7030 04:31:16,809 --> 04:31:19,812 SO, IT IS FATIGUING. 7031 04:31:19,812 --> 04:31:23,515 BUT WITHOUT IT, I THINK THINGS 7032 04:31:23,515 --> 04:31:25,117 DON'T GO ANYWHERE. 7033 04:31:25,117 --> 04:31:26,985 I THINK PHYSICIANS, AS A 7034 04:31:26,985 --> 04:31:27,986 PHYSICIAN WE SEE PEOPLE 7035 04:31:27,986 --> 04:31:29,888 SUFFERING ALL THE TIME, THAT 7036 04:31:29,888 --> 04:31:33,158 MOTIVATES THE HELL OUT OF US. 7037 04:31:33,158 --> 04:31:35,794 SCIENTISTS, IT'S IMPORTANT FOR 7038 04:31:35,794 --> 04:31:38,597 THEM TO HEAR THE STORIES SO THAT 7039 04:31:38,597 --> 04:31:39,898 THOSE EMPATHY AND COMPASSION 7040 04:31:39,898 --> 04:31:41,066 CIRCUITS KEEP THEM WORKING AT 7041 04:31:41,066 --> 04:31:42,568 NIGHT INSTEAD OF GOING HOME AND 7042 04:31:42,568 --> 04:31:45,637 HAVING A GLASS OF WINE. 7043 04:31:45,637 --> 04:31:49,041 SO ONE THING I WOULD SAY, 7044 04:31:49,041 --> 04:31:50,109 TECHNICALLY WE'VE BEEN TRYING TO 7045 04:31:50,109 --> 04:31:52,077 DO MORE OF THIS AT NINDS, SO 7046 04:31:52,077 --> 04:31:55,047 EVERY FRIDAY WE HAVE A TOWN 7047 04:31:55,047 --> 04:31:57,082 HALL, AND WE TRY TO GET SOMEONE 7048 04:31:57,082 --> 04:32:00,419 WHO HAS ONE OF THE DISORDERS TO 7049 04:32:00,419 --> 04:32:01,520 TELL THEIR STORY, SO ANYBODY 7050 04:32:01,520 --> 04:32:05,557 WANTS TO SIGN YOU WERE -- SIGN 7051 04:32:05,557 --> 04:32:08,527 UP WE'D BE HAPPY TO DO THAT. 7052 04:32:08,527 --> 04:32:10,429 IT'S USUALLY 10 MINUTES, A 7053 04:32:10,429 --> 04:32:11,997 VIDEO, IT'S A VIDEO LINK THING, 7054 04:32:11,997 --> 04:32:15,934 SO IT'S EASY TO DO. 7055 04:32:15,934 --> 04:32:17,269 YEAH, PEOPLE PUT VULNERABILITY 7056 04:32:17,269 --> 04:32:20,205 OUT THERE, A HUGE EFFECT ON OUR 7057 04:32:20,205 --> 04:32:20,405 STAFF. 7058 04:32:20,405 --> 04:32:22,608 AND THEN SPEAKING OF THE STAFF, 7059 04:32:22,608 --> 04:32:24,042 EVERYBODY TALKS ABOUT WALTER BUT 7060 04:32:24,042 --> 04:32:26,245 I DON'T REALLY DO ANYTHING. 7061 04:32:26,245 --> 04:32:28,147 I DO E-MAIL AND THAT'S IT. 7062 04:32:28,147 --> 04:32:29,948 BUT THERE ARE A LOT OF PEOPLE 7063 04:32:29,948 --> 04:32:32,384 HERE WHO WORK EVERY DAY, THE 7064 04:32:32,384 --> 04:32:34,820 STAFF OF NINDS, AND REALLY WANT 7065 04:32:34,820 --> 04:32:36,421 TO SAY I'M JUST THE FACE OF THE 7066 04:32:36,421 --> 04:32:37,823 ORGANIZATION BUT THEY DO THE 7067 04:32:37,823 --> 04:32:38,123 WORK. 7068 04:32:38,123 --> 04:32:40,926 COULD YOU ALL STAND UP FOR ONE 7069 04:32:40,926 --> 04:32:42,528 SECOND. 7070 04:32:42,528 --> 04:32:52,771 NINDS STAFF. 7071 04:32:57,276 --> 04:32:59,278 YOUR STORIES HAVE AN IMPACT ON 7072 04:32:59,278 --> 04:32:59,978 US FOR SURE. 7073 04:32:59,978 --> 04:33:02,648 THE ONLY THING THAT CAME TO MY 7074 04:33:02,648 --> 04:33:04,216 MIND AS YOU'RE TELLING THIS, IS 7075 04:33:04,216 --> 04:33:06,752 THAT THERE IS A COST TO 7076 04:33:06,752 --> 04:33:09,221 COMPASSION, THERE'S A COST TO 7077 04:33:09,221 --> 04:33:09,555 STORYTELLING. 7078 04:33:09,555 --> 04:33:10,923 YOU'RE PUTTING YOURSELVES OUT 7079 04:33:10,923 --> 04:33:11,223 THERE. 7080 04:33:11,223 --> 04:33:16,028 THE QUESTION IN MY MIND CAN YOU 7081 04:33:16,028 --> 04:33:16,895 WEAVE THE STORIES TOGETHER 7082 04:33:16,895 --> 04:33:19,464 SOMEHOW SO IT'S NOT ALL ON YOUR 7083 04:33:19,464 --> 04:33:20,299 SHOULDERS. 7084 04:33:20,299 --> 04:33:23,168 IT SEEMS LIKE THAT THERE'S SO 7085 04:33:23,168 --> 04:33:26,538 MUCH COMMONALITY HERE ONE COULD 7086 04:33:26,538 --> 04:33:28,540 THINK ABOUT DOING THAT SO THAT 7087 04:33:28,540 --> 04:33:29,741 IT'S NOT REALLY YOUR 7088 04:33:29,741 --> 04:33:32,945 RESPONSIBILITY DAY IN, DAY OUT, 7089 04:33:32,945 --> 04:33:35,781 BECAUSE THE STORIES, THEY HAVE 7090 04:33:35,781 --> 04:33:36,915 SPECIFIC THEMES TO YOUR 7091 04:33:36,915 --> 04:33:38,517 CONDITIONS, BUT TO THE BIG 7092 04:33:38,517 --> 04:33:41,687 AUDIENCE OUT THERE THEY HAVE SO 7093 04:33:41,687 --> 04:33:42,788 MANY MORE COMMONALITIES. 7094 04:33:42,788 --> 04:33:46,158 ONE THING TO THINK ABOUT. 7095 04:33:46,158 --> 04:33:49,094 I THINK THE MEDIA WHICH I DON'T 7096 04:33:49,094 --> 04:33:50,963 KNOW MUCH ABOUT, BUT THE SOCIAL 7097 04:33:50,963 --> 04:33:52,898 MEDIA, IT PROBABLY GIVES YOU 7098 04:33:52,898 --> 04:33:54,333 WAYS TO DO THAT, THAT WOULDN'T 7099 04:33:54,333 --> 04:33:57,970 HAVE BEEN POSSIBLE YEARS AGO. 7100 04:33:57,970 --> 04:33:59,905 SO, YEAH, WE WENT FULL SWING. 7101 04:33:59,905 --> 04:34:02,307 WE HEARD A LOT ABOUT THE HARD 7102 04:34:02,307 --> 04:34:07,846 CORE WAYS OF THERAPY 7103 04:34:07,846 --> 04:34:09,348 DEVELOPMENT, KNOWN PROFITS CAN 7104 04:34:09,348 --> 04:34:11,350 TAKE A ROLE, PERSONS WITH LIVED 7105 04:34:11,350 --> 04:34:12,451 EXPERIENCE IN THERAPY 7106 04:34:12,451 --> 04:34:12,918 DEVELOPMENT. 7107 04:34:12,918 --> 04:34:14,386 THE OTHER THING WE HEARD FROM A 7108 04:34:14,386 --> 04:34:24,329 GROUP OF I WOULD SAY FOLKS WHO 7109 04:34:24,329 --> 04:34:26,732 RUN NON-PROFITS, COLLABORATIVE 7110 04:34:26,732 --> 04:34:28,200 LIKE MILLIKEN, NATIONAL 7111 04:34:28,200 --> 04:34:30,569 ACADEMIES, AND THERE WE HAVE THE 7112 04:34:30,569 --> 04:34:35,040 OPPORTUNITY TO COME TOGETHER 7113 04:34:35,040 --> 04:34:36,408 AGAIN, WEAVE STORIES, 7114 04:34:36,408 --> 04:34:37,509 POTENTIALLY WORK MORE UNIFIED. 7115 04:34:37,509 --> 04:34:42,014 WHEN YOU GO TO CAPITOL HILL, 7116 04:34:42,014 --> 04:34:44,082 THEY ARE HEARING ONE PERSON 7117 04:34:44,082 --> 04:34:49,421 AFTER ANOTHER TELL A STORY, AND 7118 04:34:49,421 --> 04:34:51,923 IT'S NOT JUST THE NEURO PEOPLE 7119 04:34:51,923 --> 04:34:54,760 BUT ONE STORY AFTER ANOTHER, SOW 7120 04:34:54,760 --> 04:34:57,729 COMING TOGETHER WITH ONE VOICE, 7121 04:34:57,729 --> 04:34:59,698 THAT ABC TRIES TO PUSH, IS 7122 04:34:59,698 --> 04:35:01,667 REALLY IMPORTANT FOR ALL OF US. 7123 04:35:01,667 --> 04:35:03,502 THERE'S A LOT OF THE VALUE OF 7124 04:35:03,502 --> 04:35:06,438 WHAT YOU DO THAT CAN INCREASE IN 7125 04:35:06,438 --> 04:35:11,443 VALUE BY COMING TOGETHER THROUGH 7126 04:35:11,443 --> 04:35:14,446 THESE UMBRELLA ORGANIZATIONS 7127 04:35:14,446 --> 04:35:14,613 TOO. 7128 04:35:14,613 --> 04:35:16,782 SO, I THINK, RON, WE DID IT 7129 04:35:16,782 --> 04:35:16,982 AGAIN. 7130 04:35:16,982 --> 04:35:18,617 THIS YEAR WAS BETTER THAN LAST 7131 04:35:18,617 --> 04:35:18,917 YEAR. 7132 04:35:18,917 --> 04:35:20,152 WHAT CAN I SAY? 7133 04:35:20,152 --> 04:35:22,587 AND NEXT YEAR WILL BE BETTER 7134 04:35:22,587 --> 04:35:25,624 THAN THIS YEAR, SOMEHOW. 7135 04:35:25,624 --> 04:35:28,694 NOT SURE HOW. 7136 04:35:28,694 --> 04:35:30,829 BUT JUST FANTASTIC HOW PEOPLE 7137 04:35:30,829 --> 04:35:33,465 HAVE BEEN SO HONEST AND SO 7138 04:35:33,465 --> 04:35:35,367 GENEROUS WITH THEIR INTELLECT. 7139 04:35:35,367 --> 04:35:37,035 I THINK PEOPLE WALKING OUT OF 7140 04:35:37,035 --> 04:35:39,738 THE ROOM SHOULD HAVE A SENSE 7141 04:35:39,738 --> 04:35:40,972 THAT, YEAH, WE'RE ALL IN THE 7142 04:35:40,972 --> 04:35:44,910 SAME BOAT, ALL GOING IN THE SAME 7143 04:35:44,910 --> 04:35:45,477 DIRECTION. 7144 04:35:45,477 --> 04:35:48,947 AND, YOU KNOW, SOMETIMES YOU GET 7145 04:35:48,947 --> 04:35:50,816 SOME TOUGH SEAS BUT YOU'LL GET 7146 04:35:50,816 --> 04:35:52,150 THROUGH IT. 7147 04:35:52,150 --> 04:35:54,653 BOTH THE LINE OF PROGRESS WHICH 7148 04:35:54,653 --> 04:35:58,490 75 YEARS AGO WHEN NINDS WAS 7149 04:35:58,490 --> 04:36:02,127 STARTED WAS PRETTY DISMAL BUT 7150 04:36:02,127 --> 04:36:04,329 THE SUCCESS STORIES AS HARVEY 7151 04:36:04,329 --> 04:36:07,366 MENTIONED, RON MENTIONED, AND 7152 04:36:07,366 --> 04:36:08,667 OTHERS, THEY REALLY HAVE SHONE A 7153 04:36:08,667 --> 04:36:10,202 LIGHT AT THE END OF THE TUNNEL 7154 04:36:10,202 --> 04:36:12,137 FOR LOTS OF US. 7155 04:36:12,137 --> 04:36:13,839 SO WE'RE IN A GOOD POSITION AND 7156 04:36:13,839 --> 04:36:16,675 JUST GOT TO KEEP FIGHTING. 7157 04:36:16,675 --> 04:36:18,977 SO THANKS VERY MUCH TO THE 7158 04:36:18,977 --> 04:36:19,277 PANEL. 7159 04:36:19,277 --> 04:36:20,412 THANKS, EVERYBODY, FOR COMING 7160 04:36:20,412 --> 04:36:20,879 TOGETHER. 7161 04:36:20,879 --> 04:36:22,614 FEEL FREE TO CONTACT ME ANYTIME. 7162 04:36:22,614 --> 04:36:25,884 IF YOU HAVE FOLKS WHO WISH TO 7163 04:36:25,884 --> 04:36:29,454 TALK TO OUR STAFF, BE ON THEIR 7164 04:36:29,454 --> 04:36:31,390 FRIDAY MORNINGS, PLEASE LET US 7165 04:36:31,390 --> 04:36:31,990 KNOW. 7166 04:36:31,990 --> 04:36:41,990 ALL RIGHT.