1 00:00:05,360 --> 00:00:10,280 WELCOME TO THE 16th NINDS 2 00:00:10,280 --> 00:00:13,480 NON-PROFIT FORUM. 3 00:00:13,480 --> 00:00:16,720 THIS IS ALWAYS ONE OF MY 4 00:00:16,720 --> 00:00:18,720 FAVORITE DAYS OF THE YEAR WHERE 5 00:00:18,720 --> 00:00:20,320 AT THE FORUM, WE PROVIDE AN 6 00:00:20,320 --> 00:00:22,600 OPPORTUNITY FOR THE LEADERS OF 7 00:00:22,600 --> 00:00:24,680 ALL THE DISEASE ORGANIZATIONS 8 00:00:24,680 --> 00:00:26,920 AND OUR PORTFOLIO AND TO NETWORK 9 00:00:26,920 --> 00:00:33,480 WITH THEMSELVES AND HAVE 10 00:00:33,480 --> 00:00:35,920 DISCUSSIONS WITH NINDS STAFF AND 11 00:00:35,920 --> 00:00:36,200 LEADERSHIP. 12 00:00:36,200 --> 00:00:39,960 WE HAD HOPED TO RUN A HYBRID 13 00:00:39,960 --> 00:00:42,320 EVENT BUT WE ARE IN MONTGOMERY 14 00:00:42,320 --> 00:00:44,400 COUNTY SO THE DECISION WAS TO GO 15 00:00:44,400 --> 00:00:45,920 VIRTUAL, HOPEFULLY NEXT YEAR WE 16 00:00:45,920 --> 00:00:49,520 CAN COME BACK IN-PERSON. 17 00:00:49,520 --> 00:00:52,920 WE HAVE OVER 240 REGISTRANTS FOR 18 00:00:52,920 --> 00:00:54,680 THE EVENT AND WE WILL BE 19 00:00:54,680 --> 00:00:56,840 RECORDING THE MAJORITY OF THE 20 00:00:56,840 --> 00:01:03,320 SESSIONS THAT WILL BE AVAILABLE 21 00:01:03,320 --> 00:01:08,680 AND TO LOOK WHAT THE WAS 22 00:01:08,680 --> 00:01:09,360 DISCUSS. 23 00:01:09,360 --> 00:01:10,920 NOW, EACH YEAR WE HAVE AN 24 00:01:10,920 --> 00:01:14,800 EXECUTIVE COMMITTEE THAT WE WORK 25 00:01:14,800 --> 00:01:16,240 WITH TO DETERMINE WHAT IS THE 26 00:01:16,240 --> 00:01:20,440 THEME AND THE AGENDA FOR THE 27 00:01:20,440 --> 00:01:22,480 MEETING AND THE AGENDA AND THEME 28 00:01:22,480 --> 00:01:24,880 THIS YEAR IS HOW TO WORK WITH 29 00:01:24,880 --> 00:01:26,240 QUOTE-UNQUOTE, ANYBODY FROM 30 00:01:26,240 --> 00:01:28,480 INDUSTRY OR RESEARCH PARTNERS TO 31 00:01:28,480 --> 00:01:31,240 NIH TO IMPROVE AND ADVANCE THE 32 00:01:31,240 --> 00:01:34,160 RESEARCH TO GET BETTER 33 00:01:34,160 --> 00:01:36,040 TREATMENTS FOR PATIENTS WITH 34 00:01:36,040 --> 00:01:37,680 NEUROLOGICAL DISORDERS. 35 00:01:37,680 --> 00:01:41,520 AND SO I WANT TO GO THROUGH A 36 00:01:41,520 --> 00:01:43,880 COUPLE OF UPDATES FROM NINDS. 37 00:01:43,880 --> 00:01:46,600 MISSION OF OUR INSTITUTE IS TO 38 00:01:46,600 --> 00:01:47,640 SEEK FUNDAMENTAL KNOWLEDGE ABOUT 39 00:01:47,640 --> 00:01:49,440 THE BRAIN AND THE NERVOUS SYSTEM 40 00:01:49,440 --> 00:01:53,680 AND TO USE THAT KNOWLEDGE TO 41 00:01:53,680 --> 00:02:05,880 REDUCE TH THE PEOPLE HERE KNOW 42 00:02:05,880 --> 00:02:08,240 WE'RE UP AGAINST IN TERMS OF THE 43 00:02:08,240 --> 00:02:10,360 CHALLENGES AND THERE'S A LOT OF 44 00:02:10,360 --> 00:02:11,920 CHALLENGES AND MANY DIFFERENT 45 00:02:11,920 --> 00:02:15,560 DISORDERS AND ALL OF WHICH CORE 46 00:02:15,560 --> 00:02:19,920 A LOT OF SUFFERING AND TRAGEDY 47 00:02:19,920 --> 00:02:21,280 FOR PEOPLE AND MOST OF THEM HAVE 48 00:02:21,280 --> 00:02:22,840 LITTLE IN THE WAY OF REALLY 49 00:02:22,840 --> 00:02:23,840 EFFECTIVE TREATMENTS. 50 00:02:23,840 --> 00:02:28,760 WE HAVE SOME TREATMENTS AND SOME 51 00:02:28,760 --> 00:02:30,360 CONDITIONS BUT IN GENERAL, WE'RE 52 00:02:30,360 --> 00:02:32,000 STILL KIND OF SCRATCHING THE 53 00:02:32,000 --> 00:02:34,840 SURFACE THERE SO RESEARCH IS 54 00:02:34,840 --> 00:02:36,920 REALLY WHAT WILL LEAD TO BETTER 55 00:02:36,920 --> 00:02:41,280 TREATMENTS ANDTREATMENT AND THAR 56 00:02:41,280 --> 00:02:42,800 MISSION TO TRY AND GET US THERE. 57 00:02:42,800 --> 00:02:47,400 AS I MENTIONED WHEN I STARTED, 58 00:02:47,400 --> 00:02:52,120 THE FOREARM AND THE TOPIC AND 59 00:02:52,120 --> 00:02:53,520 THE THEME OF PARTNERSHIP HOW TO 60 00:02:53,520 --> 00:02:57,720 WORK WITH FOLKS FDA WAS SET BY 61 00:02:57,720 --> 00:03:00,920 THIS COMMITTEE AND PEOPLE ARE 62 00:03:00,920 --> 00:03:03,080 SEEING HERE ON THE LEFT AND FROM 63 00:03:03,080 --> 00:03:06,160 THE DIFFERENT DISEASE 64 00:03:06,160 --> 00:03:07,160 ORGANIZATIONS THAT REALLY SET 65 00:03:07,160 --> 00:03:08,480 THE TONE AND THE PEOPLE ON THE 66 00:03:08,480 --> 00:03:10,720 RIGHT AND THE NINDS PEOPLE WHO 67 00:03:10,720 --> 00:03:12,840 WORK WITH THEM AND THEY TROY TO 68 00:03:12,840 --> 00:03:15,360 PUT THIS SESSION, THESE SESSIONS 69 00:03:15,360 --> 00:03:15,920 TOGETHER. 70 00:03:15,920 --> 00:03:17,960 AND I DO HAVE ONE BITTERSWEET 71 00:03:17,960 --> 00:03:20,000 ANNOUNCEMENT TO MAKE AND THAT IS 72 00:03:20,000 --> 00:03:21,160 Dr. NINA SHORE, WHO HAS BEEN 73 00:03:21,160 --> 00:03:25,360 THE DEPUTY DIRECTOR AT NINDS IS 74 00:03:25,360 --> 00:03:28,600 GOING TO LEAVE NINDS AND INSTEAD 75 00:03:28,600 --> 00:03:33,440 SHE'S GOING TO ANOTHER HIGHER 76 00:03:33,440 --> 00:03:35,320 LEVEL MOVING TO LEAVE FOR ALL OF 77 00:03:35,320 --> 00:03:36,880 NIH'S INTRAMURAL RESEARCH AND 78 00:03:36,880 --> 00:03:38,960 SHE HAS BEEN THE ACTING SITE OF 79 00:03:38,960 --> 00:03:40,800 THE DIRECTOR IN OUR INTRAMURAL 80 00:03:40,800 --> 00:03:47,560 PROGRAM OVER THE LAST YEAR OR SO 81 00:03:47,560 --> 00:03:52,200 AND WE'LL HAVE A GREAT PARTNER 82 00:03:52,200 --> 00:03:54,240 AS WE MOVE INTO OUR NEXT PHASE 83 00:03:54,240 --> 00:03:55,760 IN THE INTRAMURAL PROGRAM. 84 00:03:55,760 --> 00:03:58,640 NOW, NINDS RECEIVES A BUDGET 85 00:03:58,640 --> 00:04:03,200 FROM CONGRESS AND THAT BUDGET IS 86 00:04:03,200 --> 00:04:07,200 THEN USED TO ADVANCE THE MISSION 87 00:04:07,200 --> 00:04:10,720 AND I MENTIONED THIS BEFORE THAT 88 00:04:10,720 --> 00:04:14,240 WE TRY TO HAVE MECHANISMS TO 89 00:04:14,240 --> 00:04:15,800 FUND RESEARCH THAT GOES FROM THE 90 00:04:15,800 --> 00:04:17,680 MOST BASIC RESEARCH AND ALL THE 91 00:04:17,680 --> 00:04:19,640 WAY TO PATIENTS AND EVERYTHING 92 00:04:19,640 --> 00:04:22,240 IN BETWEEN AND TRY VERY HARD NOT 93 00:04:22,240 --> 00:04:28,560 TO LEAVE FUNDING GAPS WHERE 94 00:04:28,560 --> 00:04:30,320 WHERE THERE'S NOT A MECHANISM TO 95 00:04:30,320 --> 00:04:32,320 MOVE THINGS FORWARD TO GET TO 96 00:04:32,320 --> 00:04:32,600 PATIENTS. 97 00:04:32,600 --> 00:04:34,520 THAT BEING SAID, MOST OF OUR 98 00:04:34,520 --> 00:04:35,880 FUNDING GOES INTO WHAT WE CALL 99 00:04:35,880 --> 00:04:42,400 BASIC RESEARCH AND THAT IS 20% 100 00:04:42,400 --> 00:04:44,960 TO 25% UNDER HOW THE BRAIN 101 00:04:44,960 --> 00:04:47,720 WORKS, DISEASE AGNOSTIC AND 102 00:04:47,720 --> 00:04:51,760 ABOUT 50% IS MECHANISMS OF 103 00:04:51,760 --> 00:04:53,760 DISEASES SO, WHAT IS GOING ON IN 104 00:04:53,760 --> 00:05:00,080 THE BRAIN AND PEOPLE WHO HAVE 105 00:05:00,080 --> 00:05:04,680 EPILEPSIES OR PEOPLE THAT HAVE 106 00:05:04,680 --> 00:05:06,440 DIFFERENT NEURODEGENERATIVE 107 00:05:06,440 --> 00:05:06,840 CONDITIONS. 108 00:05:06,840 --> 00:05:07,840 THAT'S BASIC RESEARCH AND THAT'S 109 00:05:07,840 --> 00:05:12,960 WHERE MOST OF OUR MONEY GOES, 110 00:05:12,960 --> 00:05:13,680 PROBABLY 75%. 111 00:05:13,680 --> 00:05:15,400 THE REST IS SPLIT BETWEEN 112 00:05:15,400 --> 00:05:17,200 TRANSLATIONAL RESEARCH WHICH IS 113 00:05:17,200 --> 00:05:20,040 MOVING THINGS FROM THE BENCH TO 114 00:05:20,040 --> 00:05:22,760 THE BEDSIDE THROUGH THE PATHWAY 115 00:05:22,760 --> 00:05:25,560 THAT IS NECESSARY TO BRING A 116 00:05:25,560 --> 00:05:29,640 THERAPY TO PATIENTS AND THAT IS 117 00:05:29,640 --> 00:05:30,240 NOT TRIVIAL. 118 00:05:30,240 --> 00:05:32,160 THERE ARE SAFETY CONCERNS, THERE 119 00:05:32,160 --> 00:05:33,600 ARE LOTS OF STEPS THAT YOU HAVE 120 00:05:33,600 --> 00:05:37,560 TO GO THROUGH JUST LIKE A 121 00:05:37,560 --> 00:05:40,320 COMPANY WOULD TO MOVE THERAPY TO 122 00:05:40,320 --> 00:05:41,320 PATIENTS THROUGH ALL THE STEPS, 123 00:05:41,320 --> 00:05:43,240 GETTING IT AT THE END, APPROVAL 124 00:05:43,240 --> 00:05:45,960 BY THE FDA TO TRY SOMETHING IN 125 00:05:45,960 --> 00:05:50,320 PATIENTS AND SO-CALLED IND OR 126 00:05:50,320 --> 00:05:50,680 IDE. 127 00:05:50,680 --> 00:05:54,320 AND WE HAVE HERE AT NINDS ARE 128 00:05:54,320 --> 00:05:56,240 LIKE A VIRTUAL PHARMACEUTICAL 129 00:05:56,240 --> 00:06:01,200 COMPANY THAT CAN HELP PEOPLE 130 00:06:01,200 --> 00:06:04,640 MOVE THINGS POINT TO THE IND FOR 131 00:06:04,640 --> 00:06:06,040 THE FDA. 132 00:06:06,040 --> 00:06:09,280 MANY OF OUR WORKS IN THE FARM 133 00:06:09,280 --> 00:06:14,400 SIDE KALIN DUSTY AND I MUST SAY 134 00:06:14,400 --> 00:06:15,840 MOST OF THE PEOPLE THAT WE WORK 135 00:06:15,840 --> 00:06:17,720 IN THIS SPACE ARE GENERALLY TIED 136 00:06:17,720 --> 00:06:19,600 TO SOME COMPANY, BIOTECH, 137 00:06:19,600 --> 00:06:21,360 SOMETIMES A LARGER PHARMA 138 00:06:21,360 --> 00:06:22,960 COMPANY AND OFTEN TIMES AN 139 00:06:22,960 --> 00:06:26,680 ACADEMIC ASSOCIATED WITH A 140 00:06:26,680 --> 00:06:31,960 COMPANY AND THIS IS WHERE WE DO 141 00:06:31,960 --> 00:06:36,040 PARTNERSHIPS WITH OUR INGUS TREE 142 00:06:36,040 --> 00:06:41,760 PARTNERS AND THE THEY'RE COMPARE 143 00:06:41,760 --> 00:06:43,400 OR EFFECTIVENESS WHERE YOU TEST 144 00:06:43,400 --> 00:06:44,920 TWO AGENTS THAT ARE AVAILABLE 145 00:06:44,920 --> 00:06:48,240 AND BEEN APPROVED BY THE FDA AND 146 00:06:48,240 --> 00:06:50,560 TO SEE WHICH ONE IS BETTER FOR A 147 00:06:50,560 --> 00:06:56,280 PARTICULAR DISEASE AND WE ALSO 148 00:06:56,280 --> 00:07:02,520 HAVE SO MOVING FROM THE IND 149 00:07:02,520 --> 00:07:04,200 STAGE TO PEOPLE WOULD BE A 150 00:07:04,200 --> 00:07:06,640 PHYSICIAN ONE STUDY TO SHOW IT'S 151 00:07:06,640 --> 00:07:08,680 SAFE AND IN A PHASE 2 STUDY 152 00:07:08,680 --> 00:07:11,040 LOOKING FOR SIGNS OF TARGETING 153 00:07:11,040 --> 00:07:12,960 GAGEMENT OF PROOF OF PRINCIPLE 154 00:07:12,960 --> 00:07:15,320 AND WE HAVE NETWORKS THAT WILL 155 00:07:15,320 --> 00:07:16,280 DO THAT AND. 156 00:07:16,280 --> 00:07:18,080 WE WOULD MUCH RATHER HAVE THE 157 00:07:18,080 --> 00:07:19,480 INDUSTRY TAKE THAT OFF OUR 158 00:07:19,480 --> 00:07:21,120 HANDS, BUT UNFORTUNATELY, FOR 159 00:07:21,120 --> 00:07:23,120 MANY OF THE SORTERS IN OUR 160 00:07:23,120 --> 00:07:27,120 PORTFOLIO, THE INDUSTRY ISN'T 161 00:07:27,120 --> 00:07:29,000 READY AND THEY FEEL IT'S TOO 162 00:07:29,000 --> 00:07:29,680 RISKY. 163 00:07:29,680 --> 00:07:31,240 ALL ACROSS THE BOARD IN OUR 164 00:07:31,240 --> 00:07:32,280 TRANSLATIONAL PROGRAMS AND OUR 165 00:07:32,280 --> 00:07:34,800 EARLY TESTING, IN PATIENT 166 00:07:34,800 --> 00:07:36,560 PROGRAMS, THE IDEA IS TO DERISK 167 00:07:36,560 --> 00:07:38,000 THESE THERAPIES SO THAT INDUSTRY 168 00:07:38,000 --> 00:07:46,200 WILL EVENTUALLY PICK THEM UP 169 00:07:46,200 --> 00:07:47,960 BECAUSE WE DON'T MAKE DRUGS BUT 170 00:07:47,960 --> 00:07:49,280 WE'RE TRYING TO DERISK THOSE 171 00:07:49,280 --> 00:07:50,560 DRUGS FOR THE INDUSTRY. 172 00:07:50,560 --> 00:07:54,600 IF YOU LOOK WHERE OUR MONEY 173 00:07:54,600 --> 00:07:56,240 GOES, IT GOES TO INVESTIGATOR 174 00:07:56,240 --> 00:08:00,440 INITIATE OR RESEARCH, THE DARK 175 00:08:00,440 --> 00:08:01,120 BLUE PIECE. 176 00:08:01,120 --> 00:08:02,080 THIS IS THE BEAUTY OF THE 177 00:08:02,080 --> 00:08:04,440 AMERICAN SYSTEM, WHERE EVERYONE 178 00:08:04,440 --> 00:08:06,880 CAN HAVE THEIR IDEA SENT INTO 179 00:08:06,880 --> 00:08:12,440 NIH AND REVIEWED BY A STUDY 180 00:08:12,440 --> 00:08:15,360 SECTION AND THE BEST IDEAS FLOAT 181 00:08:15,360 --> 00:08:18,800 TO THE TOP AND IT GETS FUNDED 182 00:08:18,800 --> 00:08:21,240 AND WE TEND TO BE VERY COGNIZANT 183 00:08:21,240 --> 00:08:25,080 OF THE STUDY SECTIONS AND THE 184 00:08:25,080 --> 00:08:26,320 CRITIQUES THEY PUT OUT, GUIDE 185 00:08:26,320 --> 00:08:28,720 MUCH OF OUR FUNDING DECISIONS IN 186 00:08:28,720 --> 00:08:29,520 THIS SPACE. 187 00:08:29,520 --> 00:08:34,080 ANOTHER COLORS ARE PARTICULAR 188 00:08:34,080 --> 00:08:36,360 AREAS THAT ARE FILLED IN SUCH AS 189 00:08:36,360 --> 00:08:40,560 TRAINING OR SOME OF THE PROGRAMI 190 00:08:40,560 --> 00:08:43,800 MENTIONED BUT THE MONEY GOES TO 191 00:08:43,800 --> 00:08:46,720 INVESTIGATOR INITIATIVE 192 00:08:46,720 --> 00:08:47,000 RESEARCH. 193 00:08:47,000 --> 00:08:49,560 THERE ARE PRETTY COMPLICATED 194 00:08:49,560 --> 00:08:52,400 MECHANISMS HERE TO KNOW WHAT IS 195 00:08:52,400 --> 00:08:53,800 THE RIGHT MECHANISM FOR YOUR 196 00:08:53,800 --> 00:08:57,720 TYPE OF RESEARCH? 197 00:08:57,720 --> 00:08:59,240 WHETHER IT'S WITH AN INDUSTRY 198 00:08:59,240 --> 00:09:02,240 PARTNER OR ACADEMIC PARTNER AND 199 00:09:02,240 --> 00:09:04,280 WE'VE TRIED TO MAKE THAT 200 00:09:04,280 --> 00:09:05,320 TRANSPARENT AS BEST WE CAN AND 201 00:09:05,320 --> 00:09:09,560 THIS IS A PROGRAM WHERE WE HAVE 202 00:09:09,560 --> 00:09:11,760 A PODCAST THAT GOES THROUGH ALL 203 00:09:11,760 --> 00:09:14,200 THE DIFFERENT PROGRAMS WE HAVE 204 00:09:14,200 --> 00:09:15,920 AND EXPLAINS HOW ONE MIGHT GET 205 00:09:15,920 --> 00:09:22,240 INVOLVED IN ANY OF THESE 206 00:09:22,240 --> 00:09:23,320 PROGRAMS. 207 00:09:23,320 --> 00:09:25,080 THE NEXT SLIDE IS REALLY 208 00:09:25,080 --> 00:09:26,040 COMPLICATED AND I MENTIONED 209 00:09:26,040 --> 00:09:27,480 BEFORE THAT WE WANTED TO MAKE 210 00:09:27,480 --> 00:09:29,800 SURE WE HAVE A FUNDING MECHANISM 211 00:09:29,800 --> 00:09:33,800 FOR EVERY STEP THAT GOES FROM A 212 00:09:33,800 --> 00:09:36,320 DISCOVERY STAGE TO AN ACTUAL 213 00:09:36,320 --> 00:09:38,440 DRUG OR TREATMENT IN PATIENTS 214 00:09:38,440 --> 00:09:41,360 AND SO WE HAVE PROGRAMS THAT ARE 215 00:09:41,360 --> 00:09:43,000 WHAT WE CALL PRO CLINICAL 216 00:09:43,000 --> 00:09:47,000 READINESS OR PROOF OF CONCEPT 217 00:09:47,000 --> 00:09:48,640 PROGRAMS SO THESE ARE EARLY 218 00:09:48,640 --> 00:09:49,880 STAGE PROGRAMS. 219 00:09:49,880 --> 00:09:53,680 WE HAVE ACTUALLY CLINICAL TRIAL 220 00:09:53,680 --> 00:09:54,520 READINESS GRANTS. 221 00:09:54,520 --> 00:09:58,280 TO STUDY PATIENTS AND GETTING 222 00:09:58,280 --> 00:09:59,480 UNDERSTANDING WHAT THE OUTCOME 223 00:09:59,480 --> 00:10:02,440 MEASURE MIGHT BE FOR A COMING 224 00:10:02,440 --> 00:10:03,320 CLINICAL TRIAL. 225 00:10:03,320 --> 00:10:04,920 THEN WE HAVE THERAPEUTIC 226 00:10:04,920 --> 00:10:06,320 DEVELOPMENT PROGRAMS AS THE 227 00:10:06,320 --> 00:10:07,800 CLINICAL TRIAL READINESS AND WE 228 00:10:07,800 --> 00:10:10,200 HAVE PHASE 1 IN HUMAN STUDIES 229 00:10:10,200 --> 00:10:12,920 AND PHASE 2 FIRST AND TARGET 230 00:10:12,920 --> 00:10:15,520 POPULATION AND PHASE 2 PROOF OF 231 00:10:15,520 --> 00:10:18,480 CONCEPT, BIO MARKERRING AND 232 00:10:18,480 --> 00:10:20,800 INFORM STUDIES AND THEN A PHASE 233 00:10:20,800 --> 00:10:24,000 2 PRELIMINARY EFFICACY AND WE 234 00:10:24,000 --> 00:10:32,720 RRARELY DOPHASE 3s. 235 00:10:32,720 --> 00:10:35,240 WE DON'T DO ANY PHASE 4 POST 236 00:10:35,240 --> 00:10:37,520 MARKETING BUT WE DO COMPARATIVE 237 00:10:37,520 --> 00:10:43,360 STUDIES AND IMPLEMENTATION 238 00:10:43,360 --> 00:10:43,840 STUDIES. 239 00:10:43,840 --> 00:10:45,400 IT'S A LONG, COMPLICATED CHART 240 00:10:45,400 --> 00:10:47,440 AND I'M FEELING IT IN HERE. 241 00:10:47,440 --> 00:10:49,360 IT'S MUCH TOO COMPLICATED TO 242 00:10:49,360 --> 00:10:49,760 REMEMBER. 243 00:10:49,760 --> 00:10:50,960 THE KEY THING IS WE HAVE PROGRAM 244 00:10:50,960 --> 00:10:53,400 DIRECTORS IN CHARGE OF THESE AND 245 00:10:53,400 --> 00:10:55,600 THEY CAN GUIDE FOLKS TO KNOW AND 246 00:10:55,600 --> 00:10:57,360 WHICH OF THESE PROGRAMS IS THE 247 00:10:57,360 --> 00:11:02,400 BEST THING FOR WHAT YOU WANT TO 248 00:11:02,400 --> 00:11:02,840 DO. 249 00:11:02,840 --> 00:11:06,480 ALL THESE PROGRAMS IN THE 250 00:11:06,480 --> 00:11:08,080 TRANSLATIONAL SPACE ARE WITH A 251 00:11:08,080 --> 00:11:12,720 INDUSTRY PARTNER AND MUCH OF OUR 252 00:11:12,720 --> 00:11:16,720 WORK IS FOCUSED ON SOME COMMON 253 00:11:16,720 --> 00:11:19,800 DISORDERS SUCH AS EPILEPSIES OR 254 00:11:19,800 --> 00:11:22,880 STROKE OR NEURO DEAGAIN NA TIVE 255 00:11:22,880 --> 00:11:24,040 CONDITIONS AND WE HAVE THE 256 00:11:24,040 --> 00:11:25,160 GREATEST NUMBER OF OUR DISEASE 257 00:11:25,160 --> 00:11:31,680 ARE THE RARE DISEASES AND SO WE 258 00:11:31,680 --> 00:11:36,120 HAVE A LARGE INVESTMENT IN RARE 259 00:11:36,120 --> 00:11:40,320 DISEASE AND THE CONSORTIUM THAT 260 00:11:40,320 --> 00:11:45,360 RUN OUT OF NCATS HAS MANY 261 00:11:45,360 --> 00:11:46,720 NEUROLOGICAL CONSORTIUM WITHIN 262 00:11:46,720 --> 00:11:49,440 IT AND WE FUND THESE 263 00:11:49,440 --> 00:11:51,320 NEUROLOGICAL CON SORRY SUM HAS 264 00:11:51,320 --> 00:11:52,480 PART OF THE RARE DISEASE 265 00:11:52,480 --> 00:11:54,320 CLINICAL RESEARCH NETWORK AND 266 00:11:54,320 --> 00:11:58,960 IT'S BEEN A VERY PRODUCTIVE 267 00:11:58,960 --> 00:12:02,120 ENDEAVOR OVER THE YEARS. 268 00:12:02,120 --> 00:12:04,600 THE TOPICS VARY AND THEY RUN A 269 00:12:04,600 --> 00:12:12,440 PERIOD OF ABOUT FIVE YEARS AND 270 00:12:12,440 --> 00:12:14,520 NEW GRANTS COME IN IN THIS RARE 271 00:12:14,520 --> 00:12:18,280 DISEASE CONSORTIUM AND WE ARE 272 00:12:18,280 --> 00:12:22,600 MOVING INTO THE SPACE OF 273 00:12:22,600 --> 00:12:23,920 DEVELOPING GENE THERAPIES FOR 274 00:12:23,920 --> 00:12:25,440 OUR RARE NEUROLOGICAL DISORDERS 275 00:12:25,440 --> 00:12:29,960 AND MOST OF WHICH ARE RELATED TO 276 00:12:29,960 --> 00:12:32,360 A GENETIC ABNORMALITY SO WE ARE 277 00:12:32,360 --> 00:12:34,840 ONE OF THE PARTNERS IN THE 278 00:12:34,840 --> 00:12:36,280 ACCELERATED MEDICINE PARTNERSHIP 279 00:12:36,280 --> 00:12:38,120 WHICH IS RUN BY THE FOUNDATION 280 00:12:38,120 --> 00:12:41,880 OF NIH AND WE'LL BE HEARING FROM 281 00:12:41,880 --> 00:12:44,120 JULIE WHO IS THE DIRECTOR 282 00:12:44,120 --> 00:12:46,680 SHORTLY AND SO THIS IS A 283 00:12:46,680 --> 00:12:48,240 PARTNERSHIP WITH MULTIPLE 284 00:12:48,240 --> 00:12:51,080 INDUSTRY AND MULTIPLE NON-PROFIT 285 00:12:51,080 --> 00:12:55,880 ORGANIZATIONS AND THE IDEA IS TO 286 00:12:55,880 --> 00:12:58,480 DEVELOP A PLATFORM THAT YOU CAN 287 00:12:58,480 --> 00:13:00,920 PLUG IN DIFFERENT GENE THERAPIES 288 00:13:00,920 --> 00:13:03,280 INTO A DELIVERY MECHANISM 289 00:13:03,280 --> 00:13:06,720 USUALLY WHAT WE CALL A V VIRUS 290 00:13:06,720 --> 00:13:08,360 THAT WOULD DELIVER THE GENE 291 00:13:08,360 --> 00:13:09,760 THERAPY TO THE TISSUE AND 292 00:13:09,760 --> 00:13:13,120 ORGANIZE OF INTEREST AND THIS 293 00:13:13,120 --> 00:13:14,800 PROGRAM IS TO DEVELOP THAT KIND 294 00:13:14,800 --> 00:13:17,800 OF PLATFORM AND STREAM LOIN THE 295 00:13:17,800 --> 00:13:20,680 DREAM THEY WILL PEE DEVELOPMENT 296 00:13:20,680 --> 00:13:23,480 PROCESS AND DO IT IN THE SAMEST 297 00:13:23,480 --> 00:13:24,200 MASTER AS POSSIBLE. 298 00:13:24,200 --> 00:13:28,520 A LOT OF IT HAS TO DO WITH 299 00:13:28,520 --> 00:13:30,040 ADVANCING HOW THIS VIRUS 300 00:13:30,040 --> 00:13:34,360 DELIVERS THE DIFFERENT JEANS AND 301 00:13:34,360 --> 00:13:36,560 IN THE GENE THERAPY WORLD, THE 302 00:13:36,560 --> 00:13:37,600 REAL CRUX IS IN THE DELIVERY 303 00:13:37,600 --> 00:13:42,400 SIDE OF THINGS AND THE GOWNS 304 00:13:42,400 --> 00:13:46,240 THEMSELVES ARE MORE EASILY 305 00:13:46,240 --> 00:13:47,400 DEVELOPED AND UNDERSTOOD THAN 306 00:13:47,400 --> 00:13:50,720 THE DELIVERY MECHANISMS AND JUST 307 00:13:50,720 --> 00:13:53,080 ONE EXAMPLE IS A WORK THAT'S 308 00:13:53,080 --> 00:13:54,880 BEEN COMING OUT OF THE BRAIN 309 00:13:54,880 --> 00:14:02,200 INITIATIVE AND TO DEVELOP 310 00:14:02,200 --> 00:14:05,720 VIRUSES THAT ARE TARGETING THE 311 00:14:05,720 --> 00:14:11,960 BRAIN AND THE NERVOUS SYSTEM AND 312 00:14:11,960 --> 00:14:12,920 THERE'S A BOONE BARRIER FROM 313 00:14:12,920 --> 00:14:14,120 GETTING INTO THAT THE BRAIN AND 314 00:14:14,120 --> 00:14:17,000 THAT IS AN ISSUE FOR THE VIRUSES 315 00:14:17,000 --> 00:14:24,240 TOO WHICH LIKE TO GO TO THE LIGE 316 00:14:24,240 --> 00:14:27,640 RIVER BUT THEY HAVE 317 00:14:27,640 --> 00:14:28,880 SOPHISTICATED STREAMING THAT 318 00:14:28,880 --> 00:14:30,440 WILL DELIVER THE GENES TO THE 319 00:14:30,440 --> 00:14:32,840 BRAIN AND STAY AWAY FROM THE 320 00:14:32,840 --> 00:14:34,440 LIVER WHERE YOU SEE THE TOXICITY 321 00:14:34,440 --> 00:14:39,600 SO THIS IS REALLY EXCITING AND 322 00:14:39,600 --> 00:14:42,440 FUTURISTIC BUT MAYBE NOT THAT 323 00:14:42,440 --> 00:14:43,240 FAR AWAY. 324 00:14:43,240 --> 00:14:46,680 IN NINDS WE DECIDED PARTICULARLY 325 00:14:46,680 --> 00:14:51,000 UNDER THE LEADERSHIP OF Dr. 326 00:14:51,000 --> 00:14:52,800 SHORE TO MAKE A BIG UNUSUAL THIS 327 00:14:52,800 --> 00:14:55,040 AREA AND START AT THE ULTRARARE 328 00:14:55,040 --> 00:14:59,240 GENE BASED THERAPY NETWORK 329 00:14:59,240 --> 00:15:01,480 CALLED THE THIS IS TO DEVELOP 330 00:15:01,480 --> 00:15:05,040 GENOMIC THERAPIES AND THEY CAN 331 00:15:05,040 --> 00:15:08,920 BE NUCLEO TIDES AND THEY ARE 332 00:15:08,920 --> 00:15:10,720 ANTI SENSE KNEW CLEO TIDES THAT 333 00:15:10,720 --> 00:15:13,320 CAN BLOCK THE PRODUCTION OF A 334 00:15:13,320 --> 00:15:16,160 HARMFUL GENE PRODUCT AND OR 335 00:15:16,160 --> 00:15:19,480 VIRAL VECTOR BASED AND WE JUST 336 00:15:19,480 --> 00:15:21,600 MENTIONED AND MAYBE EVEN GENOME 337 00:15:21,600 --> 00:15:26,000 EDITING PROCESSES SO THESE NOW 338 00:15:26,000 --> 00:15:29,760 THE ABILITY TO GO IN AND SNIP 339 00:15:29,760 --> 00:15:32,680 OUT AWE MUTATION THAT IS CAUSING 340 00:15:32,680 --> 00:15:40,040 TROUBLE AND REPLACE IT WITH THE 341 00:15:40,040 --> 00:15:45,120 NORMAL THIS IS BEING DONE IN 342 00:15:45,120 --> 00:15:48,960 SICKLE CELL DISEASE WHERE YOU 343 00:15:48,960 --> 00:15:50,640 CAN TAKE OUT THE RED BLOOD 344 00:15:50,640 --> 00:15:53,000 CELLS, EDIT THEM, WIPE OUT THE 345 00:15:53,000 --> 00:15:55,280 GONE MARROW AND REPLACE IT WITH 346 00:15:55,280 --> 00:15:59,200 THE EDITED PRO AGAIN TOE CELLS 347 00:15:59,200 --> 00:16:03,640 AND CURE SICKLE CELL THAT WAY SO 348 00:16:03,640 --> 00:16:05,560 THERE ARE A MATTER OF TIME 349 00:16:05,560 --> 00:16:06,960 BEFORE WE WORKOUT HOW TO DO THIS 350 00:16:06,960 --> 00:16:12,120 IN THE NERVOUS SYSTEM AND RIGHT 351 00:16:12,120 --> 00:16:15,880 NOW, WE HAVE AND THESE ARE 352 00:16:15,880 --> 00:16:26,320 USUALLY BIO AND THESE ARE 353 00:16:39,280 --> 00:16:40,280 MANUFACTURE THE THE GREEN 354 00:16:40,280 --> 00:16:42,560 PRODUCT AND TREAT PATIENTS AND 355 00:16:42,560 --> 00:16:44,600 SO THAT IS OUR VERY AMBITIOUS 356 00:16:44,600 --> 00:16:47,120 PLAN AND I THINK IT'S WE'RE JUST 357 00:16:47,120 --> 00:16:48,680 BEGINNING SO YOU HAVE TO GO SLOW 358 00:16:48,680 --> 00:16:52,520 AND CAREFULLY AS WE DO THIS AND 359 00:16:52,520 --> 00:16:54,160 THIS IS WHERE I THINK THE FUTURE 360 00:16:54,160 --> 00:17:02,240 LIES AND MANY OF OUR DISORDERS. 361 00:17:02,240 --> 00:17:05,800 I DID MENTION GENE EDITING AND 362 00:17:05,800 --> 00:17:07,840 JUST TALKING ABOUT THE URGENT 363 00:17:07,840 --> 00:17:10,040 NETWORK AS SOMETHING THAT IS 364 00:17:10,040 --> 00:17:14,280 POTENTIAL IN THE FUTURE AND I'M 365 00:17:14,280 --> 00:17:17,960 ALSO CO DIRECTING A COMMON FUND 366 00:17:17,960 --> 00:17:19,840 PROJECT DEVELOPING THESE TOOLS 367 00:17:19,840 --> 00:17:21,760 THAT I MENTIONED WHICH CAN THEN 368 00:17:21,760 --> 00:17:24,960 CUT OUT THE ABNORMAL GENE AND 369 00:17:24,960 --> 00:17:29,920 THE NORMAL GENE AND USING THESE 370 00:17:29,920 --> 00:17:33,040 REALLY ADVANCED GENOMIC 371 00:17:33,040 --> 00:17:35,200 TECHNIQUES CALLED SAY CRISPR CAS 372 00:17:35,200 --> 00:17:37,680 9 AND SO IN THIS COMMON FUND 373 00:17:37,680 --> 00:17:39,600 PROJECT, THE FIRST FIVE YEARS, 374 00:17:39,600 --> 00:17:41,480 WE FUNDED GROUPS TO DEVELOP 375 00:17:41,480 --> 00:17:43,640 REALLY POWERFUL TOOLS AND THE 376 00:17:43,640 --> 00:17:47,280 SECOND FIVE YEARS WE'RE HOPING 377 00:17:47,280 --> 00:17:49,440 TO ACTUALLY TEST THOSE TOOLS AND 378 00:17:49,440 --> 00:17:53,400 REFINE THEM BUT ALSO TO BEGIN, 379 00:17:53,400 --> 00:17:56,800 IF SAVED, TO START TESTING THIS 380 00:17:56,800 --> 00:17:59,200 THERAPY IN A COUPLE OF GENOMIC 381 00:17:59,200 --> 00:18:00,240 DISORDERS BECAUSE THESE ARE 382 00:18:00,240 --> 00:18:03,920 FIRST IN HUMAN TYPE OF WORK, 383 00:18:03,920 --> 00:18:05,760 THESE WOULD BE DISORDERS THAT 384 00:18:05,760 --> 00:18:10,720 ARE OTHERWISE FATAL IF NOT 385 00:18:10,720 --> 00:18:14,600 TREATED AND WHERE THERE IS A 386 00:18:14,600 --> 00:18:17,280 REAL ETHICAL FOUNDATION TO TAKE 387 00:18:17,280 --> 00:18:20,840 A RISK WITH A TREATMENT SUCH AS 388 00:18:20,840 --> 00:18:21,200 THIS. 389 00:18:21,200 --> 00:18:23,560 AND THE HOPE IS WE LEARN HOW TO 390 00:18:23,560 --> 00:18:27,480 DO THIS AND IT BECOMES SAFER 391 00:18:27,480 --> 00:18:29,280 OVER TIME AND WE CAN REALLY 392 00:18:29,280 --> 00:18:33,040 EXPAND, NOT JUST FOR CRISPR-CAS 393 00:18:33,040 --> 00:18:34,960 9 BUT GONE THERAPY IN GENERAL TO 394 00:18:34,960 --> 00:18:43,440 MANY OTHER DISORDERS AND SO IN 395 00:18:43,440 --> 00:18:45,920 PHASE 2 WE'RE HOPING TO GET 396 00:18:45,920 --> 00:18:46,960 THESE IN THE CLINICS. 397 00:18:46,960 --> 00:18:49,000 IT'S A VERY AMBITIOUS PROGRAM. 398 00:18:49,000 --> 00:18:50,520 WE TALKED A LITTLE BIT ABOUT OUR 399 00:18:50,520 --> 00:18:51,680 THERAPY DEVELOPMENT GROUP, WHICH 400 00:18:51,680 --> 00:18:56,040 I MENTIONED IS MADE UP OF VERY 401 00:18:56,040 --> 00:18:57,240 SOPHISTICATED PROGRAM OFFICIALS, 402 00:18:57,240 --> 00:18:59,840 MANY OF WHICH CAME IN FROM 403 00:18:59,840 --> 00:19:01,680 INDUSTRY AND THEY RUN WHAT WE 404 00:19:01,680 --> 00:19:04,120 CALL THE BLUE PRINT NEURO 405 00:19:04,120 --> 00:19:05,640 THERAPEUTICS NETWORK AND THIS IS 406 00:19:05,640 --> 00:19:08,160 ACTUALLY NOT JUST FOR NINDS BUT 407 00:19:08,160 --> 00:19:12,080 OUR GROUP ENGAGES ACROSS ALL THE 408 00:19:12,080 --> 00:19:12,760 NEUROSCIENCE INSTITUTES SO SOME 409 00:19:12,760 --> 00:19:15,520 OF THE THERAPIES MIGHT BE FOR AN 410 00:19:15,520 --> 00:19:18,400 EYE DISEASE OR DEMENTIA OR AGING 411 00:19:18,400 --> 00:19:20,440 INSTITUTE OR A DISORDER IN THE 412 00:19:20,440 --> 00:19:23,200 NATIONAL FOR CHILD HEALTH AND 413 00:19:23,200 --> 00:19:23,680 DEVELOPMENT. 414 00:19:23,680 --> 00:19:27,480 BUT THEY'RE ALL NEURO-BASED 415 00:19:27,480 --> 00:19:30,080 THERAPIES AND THE IP BELONG TO 416 00:19:30,080 --> 00:19:33,400 THE GRANTEE SO NIH IS NOT PART, 417 00:19:33,400 --> 00:19:35,720 THERE'S NO RISK TO THE 418 00:19:35,720 --> 00:19:37,160 INTELLECTUAL PROPERTY WE'RE JUST 419 00:19:37,160 --> 00:19:38,680 FUNDING TO DERISK THE 420 00:19:38,680 --> 00:19:40,360 THERAPEUTICS OF THE POINT OF THE 421 00:19:40,360 --> 00:19:41,520 INDUSTRY INVESTMENTS AND 422 00:19:41,520 --> 00:19:43,320 ADVANCES THE NEW DRUGS TOWARDS 423 00:19:43,320 --> 00:19:44,960 PATIENTS EFFICIENTLY. 424 00:19:44,960 --> 00:19:47,680 AND THERE'S VERY, AS I 425 00:19:47,680 --> 00:19:49,200 MENTIONED, THERE'S PROGRAMS FROM 426 00:19:49,200 --> 00:19:59,720 THE EXPLORATORY TO THE DRUG AND 427 00:20:04,160 --> 00:20:07,960 AND I MENTIONED THESE ARE 428 00:20:07,960 --> 00:20:09,800 GENERALLY THESE ARE LINED WITH 429 00:20:09,800 --> 00:20:11,440 DISEASE ORGANIZATIONS AND MANY 430 00:20:11,440 --> 00:20:14,560 OF THE INDUSTRY FOLKS ARE ALSO 431 00:20:14,560 --> 00:20:16,440 ALIGNED WITH INDUSTRY PARTNERS 432 00:20:16,440 --> 00:20:18,440 SO THESE ARE REAL EXAMPLES OF 433 00:20:18,440 --> 00:20:19,960 THE PARTNERSHIP THAT WE'RE GOING 434 00:20:19,960 --> 00:20:24,360 TO TALK ABOUT TODAY AND IN THE 435 00:20:24,360 --> 00:20:26,240 BLUE PRINT THERAPEUTICS, THERE 436 00:20:26,240 --> 00:20:36,000 ARE A SERIES OF CONTRACTS OUT TO 437 00:20:36,000 --> 00:20:36,680 COMPANIES MOST BIO TECHS DO HAVE 438 00:20:36,680 --> 00:20:42,320 THAT AND MOST OF THE AK DEEMIA 439 00:20:42,320 --> 00:20:45,800 DON'T HAVE THE CHEM ASSIST AND 440 00:20:45,800 --> 00:20:48,520 PEOPLE WHO DO TOXICOLOGY AND 441 00:20:48,520 --> 00:20:49,600 MANUFACTURING. 442 00:20:49,600 --> 00:20:50,360 SO, WE HAVE CONTRACTS OF THE 443 00:20:50,360 --> 00:20:52,280 PEOPLE WHO WIN THE AWARDS HAVE 444 00:20:52,280 --> 00:20:53,640 ACCESS THOUGH THESE CONTRACTS TO 445 00:20:53,640 --> 00:20:55,200 DO THIS WORK AS THEY MOVE 446 00:20:55,200 --> 00:20:56,560 TOWARDS THE IND. 447 00:20:56,560 --> 00:20:58,200 AND I'M GOING TO END NOW JUST 448 00:20:58,200 --> 00:21:01,120 WITH A MENTION ABOUT OUR 449 00:21:01,120 --> 00:21:03,760 TRAINING PROGRAMS AND BECAUSE 450 00:21:03,760 --> 00:21:09,200 FOR MY VIEW, NINDS, NIH HAS 451 00:21:09,200 --> 00:21:09,760 RESOURCES. 452 00:21:09,760 --> 00:21:12,720 THERE ARE A HOST OF REALLY GREAT 453 00:21:12,720 --> 00:21:14,840 IDEAS AND OPPORTUNITIES. 454 00:21:14,840 --> 00:21:18,000 SO, WHAT IS IT THAT REALLY SETS 455 00:21:18,000 --> 00:21:22,280 THE FUTURE AND THE PACE OF THE 456 00:21:22,280 --> 00:21:23,560 DISCOVERY AND TRAPS LAYING AND 457 00:21:23,560 --> 00:21:26,960 THAT IS ACTUALLY PEOPLE. 458 00:21:26,960 --> 00:21:31,840 I THINK THAT THE BOTTLENECK IS 459 00:21:31,840 --> 00:21:38,360 REALLY THE PEOPLE IN THE PROCESS 460 00:21:38,360 --> 00:21:38,920 OF TRANSLATION. 461 00:21:38,920 --> 00:21:43,200 THERE ARE SOME GOOD ONES, BUT 462 00:21:43,200 --> 00:21:49,480 IT'S NOT THE MOST COMMON CAREER 463 00:21:49,480 --> 00:21:51,120 PATH FOR MANY PEOPLE. 464 00:21:51,120 --> 00:21:52,520 MANY PEOPLE WHY GREAT SCIENTISTS 465 00:21:52,520 --> 00:21:54,320 WHO LATE IN THEIR CAREER DECIDED 466 00:21:54,320 --> 00:21:56,200 THEY WANTED TO DEVELOP THEIR 467 00:21:56,200 --> 00:22:00,800 IDEAS INTO A THERAPY. 468 00:22:00,800 --> 00:22:02,440 THEY'RE STILL NAIVE AT THAT 469 00:22:02,440 --> 00:22:04,600 POINT SO WE REALLY NEED TO DO IS 470 00:22:04,600 --> 00:22:07,560 TO WORK ON TRAINING PEOPLE IN 471 00:22:07,560 --> 00:22:09,640 THIS SPACE AND WE HAVE A 472 00:22:09,640 --> 00:22:11,280 TRAINING PROGRAM NOW FOR 473 00:22:11,280 --> 00:22:13,000 TRANSLATIONAL RESEARCH AND I 474 00:22:13,000 --> 00:22:15,480 THINK IT'S THE DISEASE 475 00:22:15,480 --> 00:22:19,240 ORGANIZATIONS THAT CAN REALLY 476 00:22:19,240 --> 00:22:20,880 HOOK SOMEONE ON THIS IDEA OF 477 00:22:20,880 --> 00:22:22,520 WORKING TOGETHER WITH YOU TO 478 00:22:22,520 --> 00:22:24,920 DEVELOP THERAPIES FOR YOUR 479 00:22:24,920 --> 00:22:27,040 PATIENTS AND FOR THE PEOPLE THAT 480 00:22:27,040 --> 00:22:35,120 YOU REALLY CARE ABOUT AND I 481 00:22:35,120 --> 00:22:36,880 THINK YOU ARE MUCH MORE 482 00:22:36,880 --> 00:22:37,680 CONVINCING THAN THE GOVERNMENT 483 00:22:37,680 --> 00:22:39,200 TO SAY I'M GOING TO WORK ON THIS 484 00:22:39,200 --> 00:22:41,000 RARE DISEASE FOR THE REST OF MY 485 00:22:41,000 --> 00:22:41,600 CAREER. 486 00:22:41,600 --> 00:22:42,840 IT'S SOMETHING THAT NIH WILL 487 00:22:42,840 --> 00:22:45,720 MAKE HAPPEN BUT DISEASE 488 00:22:45,720 --> 00:22:52,280 ORGANIZATION, YOU CAN MAKE IT 489 00:22:52,280 --> 00:23:02,400 HAPPEN. 490 00:23:08,400 --> 00:23:10,600 THE NUMBER OF APPLICATIONS HAS 491 00:23:10,600 --> 00:23:15,120 BEEN FLAT GOING BACK 22 YEARS 492 00:23:15,120 --> 00:23:24,480 AND IF YOU AT THE STAGE OF 493 00:23:24,480 --> 00:23:25,520 TRANSLATION AND SO AGAIN, I 494 00:23:25,520 --> 00:23:28,480 THINK IT'S A DISEASE 495 00:23:28,480 --> 00:23:30,000 ORGANIZATIONS THAT CAN REALLY 496 00:23:30,000 --> 00:23:35,280 LIGHT THE FIRE AND FOLKS TO WHO 497 00:23:35,280 --> 00:23:39,280 ARE TRAINED TO TAKE CARE OF 498 00:23:39,280 --> 00:23:40,800 PATIENTS AND SPEND THEIR CAREER 499 00:23:40,800 --> 00:23:43,200 WORKING WITH PATIENTS TO DEVELOP 500 00:23:43,200 --> 00:23:44,600 THERAPIES BUT IT'S ONE OF THE 501 00:23:44,600 --> 00:23:46,440 BIGGEST BOTTLENECKS WE HAVE. 502 00:23:46,440 --> 00:23:49,840 IN TERMS OF HOW THE NINDS 503 00:23:49,840 --> 00:23:51,160 PARTNERS, WE ARE ALWAYS LOOKING 504 00:23:51,160 --> 00:23:54,240 TO PARTNER. 505 00:23:54,240 --> 00:23:56,040 WITH INDUSTRY THAT CAN ADVANCE 506 00:23:56,040 --> 00:23:57,920 OUR MISSION WITH DISEASE 507 00:23:57,920 --> 00:23:59,360 ORGANIZATIONS AND WE HAVE OUR 508 00:23:59,360 --> 00:24:01,720 COUNCIL THAT MAKES ALL THE 509 00:24:01,720 --> 00:24:03,080 DECISIONS ON WHAT WE FUND. 510 00:24:03,080 --> 00:24:04,920 WE DON'T FUND ANYTHING UNLESS 511 00:24:04,920 --> 00:24:07,240 THE COUNCIL GROWS AND THIS HAS 512 00:24:07,240 --> 00:24:09,160 PUBLIC MEMBERS AS WELL AS 513 00:24:09,160 --> 00:24:11,840 SCIENTISTS AND PHYSICIANS. 514 00:24:11,840 --> 00:24:17,160 WE DO STRATEGIC PLANNING WHICH 515 00:24:17,160 --> 00:24:21,200 Dr. SHORE LED FOR US BUT RIGHT 516 00:24:21,200 --> 00:24:25,520 NOW WE'RE DOING STRATEGIC 517 00:24:25,520 --> 00:24:28,480 PLANNING AND ALL THESE DIFFERENT 518 00:24:28,480 --> 00:24:30,800 EVENTS COME UP, WE'RE ALWAYS 519 00:24:30,800 --> 00:24:32,680 PARTNERING WITH THE DISEASE 520 00:24:32,680 --> 00:24:34,480 ORGANIZATIONS AND WE'RE ALSO 521 00:24:34,480 --> 00:24:37,360 LOOKING FOR INDUSTRY INPUT 522 00:24:37,360 --> 00:24:38,560 BECAUSE WHEN YOU GET TO THE 523 00:24:38,560 --> 00:24:39,520 TREATMENTS BECAUSE THAT'S WHAT 524 00:24:39,520 --> 00:24:41,280 IS REALLY GOING TO MAKE A 525 00:24:41,280 --> 00:24:43,800 DIFFERENCE FOR PATIENTS AND WE 526 00:24:43,800 --> 00:24:49,240 HAVE CONFERENCES WHERE THESE ARE 527 00:24:49,240 --> 00:24:51,600 ALWAYS INCLUSIVE OF PUBLIC 528 00:24:51,600 --> 00:24:56,200 MEMBERS AND THOSE WHO REPRESENT 529 00:24:56,200 --> 00:24:57,640 THE DISORDERS THAT WE'RE TRYING 530 00:24:57,640 --> 00:24:58,480 TO ATTACK. 531 00:24:58,480 --> 00:25:00,200 IT'S A LITTLE BIT ABOUT HOW WE 532 00:25:00,200 --> 00:25:02,160 PARTNER AND THE MECHANISMS FOR 533 00:25:02,160 --> 00:25:03,600 PARTNERSHIP AND I'M LOOKING 534 00:25:03,600 --> 00:25:06,200 FORWARD TO THE REST OF THE 535 00:25:06,200 --> 00:25:08,440 DISCUSSIONS WITH REGARDS TO THIS 536 00:25:08,440 --> 00:25:11,400 TOPIC AND HOW WE WORK WITH 537 00:25:11,400 --> 00:25:14,200 INDUSTRIES AND NIH AND ACADEMIC 538 00:25:14,200 --> 00:25:17,200 TO ADVANCE OUR INDIVIDUAL 539 00:25:17,200 --> 00:25:17,480 MISSIONS. 540 00:25:17,480 --> 00:25:21,800 I WANT TO THANK YOU FOR YOUR 541 00:25:21,800 --> 00:25:23,680 ATTENTION AND NOW I'D LIKE TO 542 00:25:23,680 --> 00:25:28,440 INTRODUCE OUR KEYNOTE SPEAKER, 543 00:25:28,440 --> 00:25:32,760 WHO IS Dr. -- I HAVE MY NOTES 544 00:25:32,760 --> 00:25:34,080 HERE. 545 00:25:34,080 --> 00:25:38,360 Dr. JULIE GERBERDING THE NEW 546 00:25:38,360 --> 00:25:40,000 CHIEF OFFICER FOR THE FOUNDATION 547 00:25:40,000 --> 00:25:41,520 OF THE NATIONAL INSTITUTE OF 548 00:25:41,520 --> 00:25:44,040 HEALTH SO OTHERWISE KNOWN AS 549 00:25:44,040 --> 00:25:45,840 FNIH AND THE FOUNDATION WAS SET 550 00:25:45,840 --> 00:25:48,040 UP BY CONGRESS TO MANAGE 551 00:25:48,040 --> 00:25:49,480 RESEARCH ALLIANCES WITH PUBLIC 552 00:25:49,480 --> 00:25:51,760 AND PRIVATE INSTITUTIONS AND 553 00:25:51,760 --> 00:25:55,280 SUPPORT OF THE MISSIONS OF THE 554 00:25:55,280 --> 00:26:00,080 NIH AND SO IT IS REALLY A 555 00:26:00,080 --> 00:26:04,040 PARTNERSHIP ORGANIZATION AND 556 00:26:04,040 --> 00:26:06,440 JULIE COMES WITH EXPERIENCE AND 557 00:26:06,440 --> 00:26:07,960 CREDENTIALS AND PASSION FOR THIS 558 00:26:07,960 --> 00:26:09,600 TYPE OF PARTNERSHIP. 559 00:26:09,600 --> 00:26:11,160 SHE WAS PREVIOUSLY THE EXECUTIVE 560 00:26:11,160 --> 00:26:12,960 VOICE PRESIDENT OF THE CHIEF 561 00:26:12,960 --> 00:26:17,720 PATIENT OFFICER AT MERK AND SHE 562 00:26:17,720 --> 00:26:20,080 JOINED MERK IN 2010 AS A 563 00:26:20,080 --> 00:26:21,120 PRESIDENT OF THE THEIR VACCINE 564 00:26:21,120 --> 00:26:24,200 PROGRAM AND DIRECTOR OF THE CDC 565 00:26:24,200 --> 00:26:30,280 AND SHE LED THE AGENCY BETWEEN 566 00:26:30,280 --> 00:26:33,400 2002 AND 2009 AND SHE'S TRAINED 567 00:26:33,400 --> 00:26:33,640 PHYSICIAN. 568 00:26:33,640 --> 00:26:36,440 SHE DID HER UNDERGRADUATE MD 569 00:26:36,440 --> 00:26:37,760 DEGREES AT CASE WESTERN AND 570 00:26:37,760 --> 00:26:39,880 TRAINED IN INTERNAL MEDICINE AND 571 00:26:39,880 --> 00:26:40,920 INFECTIOUS DISEASE AT UNIVERSITY 572 00:26:40,920 --> 00:26:42,080 OF CALIFORNIA SAN FRANCISCO AND 573 00:26:42,080 --> 00:26:44,920 SHE WAS ON THE FACULTY THERE FOR 574 00:26:44,920 --> 00:26:47,520 MANY YEARS AND AND ALSO AND 575 00:26:47,520 --> 00:26:50,000 UNIVERSITY OF CALIFORNIA 576 00:26:50,000 --> 00:26:51,400 BERKELEY AND SHE'S REALLY VERY 577 00:26:51,400 --> 00:26:53,200 WELL RESPECTED AND MULTIPLE 578 00:26:53,200 --> 00:26:56,160 HONORS AND AWARDS AND WE ARE SO 579 00:26:56,160 --> 00:26:58,040 LUCKY TO HAVE JULIE RUNNING THE 580 00:26:58,040 --> 00:27:01,400 FOUNDATION FOR NIH AND NINDS HAS 581 00:27:01,400 --> 00:27:08,440 HAD SO MANY GREAT RELATIONSHIPS. 582 00:27:08,440 --> 00:27:09,680 I'M LOOKING FORWARD TO YOUR 583 00:27:09,680 --> 00:27:09,960 COMMENTS. 584 00:27:09,960 --> 00:27:11,200 >> THANK YOU, WALTER. 585 00:27:11,200 --> 00:27:13,120 I'M REALLY HONORED TO BE THE 586 00:27:13,120 --> 00:27:14,800 KEYNOTE OF THIS PARTICULAR 587 00:27:14,800 --> 00:27:18,520 PROGRAM AND IT'S REALLY PROBABLY 588 00:27:18,520 --> 00:27:20,920 MY FIRST PUBLIC PRESENTATION ON 589 00:27:20,920 --> 00:27:23,960 BEHALF OF FNIH AND CONJUNCTION 590 00:27:23,960 --> 00:27:25,440 OF THE NIH AND I COULDN'T THINK 591 00:27:25,440 --> 00:27:27,520 OF A BETTER AUDIENCE FOR IT SO 592 00:27:27,520 --> 00:27:29,400 IT'S TEAR TO MY HEART TO REALLY 593 00:27:29,400 --> 00:27:32,400 BE ENGAGING WITH PATIENTS 594 00:27:32,400 --> 00:27:34,600 ORGANIZATIONS, CARETAKER 595 00:27:34,600 --> 00:27:35,600 ORGANIZATIONS, ET CETERA, BUT 596 00:27:35,600 --> 00:27:41,880 PARTICULARLY WITH A PHOTOGRAPHIC 597 00:27:41,880 --> 00:27:50,160 HE IS I HAVE TO ADMIT TO YOU I 598 00:27:50,160 --> 00:27:51,840 WASN'T REALLY FAMILIAR WITH THE 599 00:27:51,840 --> 00:27:53,120 FNIH EVEN WHEN I WAS IN 600 00:27:53,120 --> 00:28:02,320 GOVERNMENT AND NOW THAT AND THE 601 00:28:02,320 --> 00:28:03,600 ROLE THIS ORGANIZATION PLAYS AND 602 00:28:03,600 --> 00:28:08,320 TRYING TO BE A INTERFACE NOT JUT 603 00:28:08,320 --> 00:28:09,960 BETWEEN THE NIH AND INDUSTRY 604 00:28:09,960 --> 00:28:11,400 THAT YOU'VE BEEN HEARING ABOUT, 605 00:28:11,400 --> 00:28:12,800 BUT WITH OTHER ORGANIZATIONS 606 00:28:12,800 --> 00:28:16,200 INCLUDING A NUMBER OF PATIENT 607 00:28:16,200 --> 00:28:18,640 AND NON PROFITS AND THE GATES 608 00:28:18,640 --> 00:28:19,760 FOUNDATION, OTHER FOUNDATIONS, 609 00:28:19,760 --> 00:28:21,960 ET CETERA, AND AS WELL AS JUST 610 00:28:21,960 --> 00:28:23,880 INDIVIDUAL STAKEHOLDERS AND 611 00:28:23,880 --> 00:28:24,880 SOMETIMES PHILANTHROPISTS WHO 612 00:28:24,880 --> 00:28:27,280 ARE INTERESTED IN OUR WORK OUR 613 00:28:27,280 --> 00:28:28,680 MISSION IS VERY BROAD. 614 00:28:28,680 --> 00:28:31,160 IT'S REALLY TO SUPPORT THE 615 00:28:31,160 --> 00:28:34,240 MISSION OF THE NIH SO THAT IS A 616 00:28:34,240 --> 00:28:37,160 VERY BROAD INTERPRETATION OF OUR 617 00:28:37,160 --> 00:28:38,240 CONGRESSIONAL AUTHORITY BUT WE 618 00:28:38,240 --> 00:28:44,680 DO TEND TO FOCUS ON THREE MAIN 619 00:28:44,680 --> 00:28:45,720 CHANNELS OF ENGAGEMENT. 620 00:28:45,720 --> 00:28:47,160 ONE IS SUPPORT FOR SCIENCE AND 621 00:28:47,160 --> 00:28:48,360 WE'LL SAY A BIT MORE ABOUT THAT 622 00:28:48,360 --> 00:28:50,480 AND THE SECOND FOR SUPPORT FOR 623 00:28:50,480 --> 00:28:55,400 SCIENTISTS AND WE DO THAT BY 624 00:28:55,400 --> 00:28:58,880 SUPPORTING LABS AT THE NIH, 625 00:28:58,880 --> 00:29:00,120 SCIENTIFIC MEETINGS, ET CETERA, 626 00:29:00,120 --> 00:29:02,720 ET CETERA, TO TRY TO NOT ONLY BE 627 00:29:02,720 --> 00:29:04,720 A FORCE OF THE ACTUAL RESEARCH, 628 00:29:04,720 --> 00:29:06,240 BUT SUPPORTING THE PEOPLE AND 629 00:29:06,240 --> 00:29:09,080 THE PIPELINE OF PEOPLE NECESSARY 630 00:29:09,080 --> 00:29:11,240 TO CONDUCT AND PARTICIPATE IN 631 00:29:11,240 --> 00:29:17,800 THAT RESEARCH IN AND OUT OF THE 632 00:29:17,800 --> 00:29:17,960 NIH. 633 00:29:17,960 --> 00:29:20,840 IN OUR THIRD DOMAIN, WE HAVE A 634 00:29:20,840 --> 00:29:21,840 ROLE IN THE THOUGHT LEADERSHIP. 635 00:29:21,840 --> 00:29:23,440 FOR ME COMING INTO THIS ROLE, 636 00:29:23,440 --> 00:29:25,920 WITH MY BACKGROUND AS THE CHIEF 637 00:29:25,920 --> 00:29:27,880 PATIENT OFFICER AT MERK, I 638 00:29:27,880 --> 00:29:36,360 REALLY WANT TO BRING IT'S 639 00:29:36,360 --> 00:29:38,560 EXCITING FOR ME TO REALLY 640 00:29:38,560 --> 00:29:39,880 INITIATE THIS CONVERSATION AND 641 00:29:39,880 --> 00:29:41,360 I'M SHARING MY E-MAIL AT THE END 642 00:29:41,360 --> 00:29:46,400 OF IT BUT I DO HOPE TO BE ABLE 643 00:29:46,400 --> 00:29:54,280 TO MEET WOMAN OF YOU FOR SEVERAL 644 00:29:54,280 --> 00:29:55,560 REASONS OF HOW WE MIGHT BE 645 00:29:55,560 --> 00:29:56,840 HELPFUL IN THE FUTURE AND I'M 646 00:29:56,840 --> 00:29:58,040 INTERESTED UNTIL THE PATIENT 647 00:29:58,040 --> 00:30:00,760 ENGAGEMENT AND THE END-TO-END 648 00:30:00,760 --> 00:30:01,760 CLINICAL RESEARCH PROCESS. 649 00:30:01,760 --> 00:30:02,680 SOMETHING I'VE LEARNED ABOUT 650 00:30:02,680 --> 00:30:04,280 FROM THE INDUSTRY SIDE BUT I 651 00:30:04,280 --> 00:30:07,200 WOULD LIKE TO LEARN MORE ABOUT 652 00:30:07,200 --> 00:30:10,080 IT FROM THE EXTERNAL 653 00:30:10,080 --> 00:30:10,360 PERSPECTIVE. 654 00:30:10,360 --> 00:30:12,400 I'VE MEET YOU AT THE BIO ANNUAL 655 00:30:12,400 --> 00:30:14,040 PATIENT ENGAGEMENT SUMMIT, AND I 656 00:30:14,040 --> 00:30:15,560 HOPE I WILL BE INTERACTING WITH 657 00:30:15,560 --> 00:30:17,240 SOME OF YOU IN MY ROLE AS A 658 00:30:17,240 --> 00:30:21,320 MEMBER OF THE NATIONAL HEALTH 659 00:30:21,320 --> 00:30:23,440 COUNCIL BOARD SO I LOCK FORWARD 660 00:30:23,440 --> 00:30:26,280 TO LINING, LEARNING AND SEE WHAT 661 00:30:26,280 --> 00:30:30,240 FNIH CAN DO TO BE INCLUSIVE OF 662 00:30:30,240 --> 00:30:31,680 THE POPULATIONS WE'RE ALL TRYING 663 00:30:31,680 --> 00:30:32,400 TO SERVE. 664 00:30:32,400 --> 00:30:33,240 I DON'T KNOW WHAT WAS IN THE 665 00:30:33,240 --> 00:30:35,040 MINDS OF CONGRESS WHEN THEY 666 00:30:35,040 --> 00:30:37,960 CREATED THE FNIH BUT PART OF 667 00:30:37,960 --> 00:30:40,800 THAT EFFORT WAS AN ATTEMPT TO 668 00:30:40,800 --> 00:30:43,400 BRING AN INTERFACE IN THE SENSE 669 00:30:43,400 --> 00:30:44,920 MIDDLE WEAR SO THAT THE 670 00:30:44,920 --> 00:30:46,200 GOVERNMENT AND INDUCE TREMENDOUS 671 00:30:46,200 --> 00:30:51,920 INDUSTRY CANCOLLABORATION. 672 00:30:51,920 --> 00:30:53,680 IT'S NOT POSSIBLE FOR INDUSTRY 673 00:30:53,680 --> 00:30:55,600 TO GIVE MONEY TO THE GOVERNMENT 674 00:30:55,600 --> 00:30:58,200 OR KIND OF OBVIOUS CONFLICT OF 675 00:30:58,200 --> 00:30:58,920 INTEREST REASONS. 676 00:30:58,920 --> 00:31:03,560 SO IT'S IMPORTANT TO HAVE A 677 00:31:03,560 --> 00:31:05,440 ADJUDICATED, ETHIC-BOUND, 678 00:31:05,440 --> 00:31:08,080 MECHANISM SO THAT APPROPRIATE 679 00:31:08,080 --> 00:31:09,600 COLLABORATIONS CAN BE CRAFTED 680 00:31:09,600 --> 00:31:10,880 AND ALSO THEY CAN BE CONDUCTED 681 00:31:10,880 --> 00:31:12,280 IN THE RIGHT WAY. 682 00:31:12,280 --> 00:31:16,480 AND I WON'T GO INTO SOME OF THE 683 00:31:16,480 --> 00:31:18,200 COMPETENCIES OF THE FNIH BUT 684 00:31:18,200 --> 00:31:19,440 I'LL HIGHLIGHT A COUPLE THAT 685 00:31:19,440 --> 00:31:20,680 STAND OUT TO ME. 686 00:31:20,680 --> 00:31:23,720 ONE IS PROJECT MANAGEMENT AND 687 00:31:23,720 --> 00:31:26,160 I'LL USE ACTIVE AS AN EXAMPLE OF 688 00:31:26,160 --> 00:31:26,360 THAT. 689 00:31:26,360 --> 00:31:27,760 THE MECHANISMS THAT ARE BROUGHT 690 00:31:27,760 --> 00:31:29,160 ALL KINDS OF PARTNERS TOGETHER 691 00:31:29,160 --> 00:31:31,760 TO ACCELERATE THE PROGRESS OF 692 00:31:31,760 --> 00:31:34,680 ANTI VIRALS AND VACCINES AND 693 00:31:34,680 --> 00:31:36,920 DIAGNOSTICS DURING COVID. 694 00:31:36,920 --> 00:31:39,000 THESE PROJECT MANAGEMENT, KIND 695 00:31:39,000 --> 00:31:41,800 OF IN THE BACKGROUND BUT THE 696 00:31:41,800 --> 00:31:42,880 BEST PROJECT MANAGEMENT I'VE 697 00:31:42,880 --> 00:31:46,320 SEEN IN ANY SETTING, INCLUDING 698 00:31:46,320 --> 00:31:47,840 MY ACADEMIC BACKGROUND AND 699 00:31:47,840 --> 00:31:49,120 GOVERNMENT BACKGROUND AND INDUCE 700 00:31:49,120 --> 00:31:50,040 TREMENDOUS BACKGROUND AND THIS 701 00:31:50,040 --> 00:31:54,240 IS JUST A BRILLIANT SET OF 702 00:31:54,240 --> 00:31:59,760 SCIENTISTS AND THEIR AND CREATE 703 00:31:59,760 --> 00:32:04,800 A WHOLE GREATER THAN THE SOME OF 704 00:32:04,800 --> 00:32:14,000 THE PARTS. 705 00:32:14,000 --> 00:32:15,920 ONE OF THE STRENGTHS REALLY THE 706 00:32:15,920 --> 00:32:20,160 INTERFACE WITH THE FDA AND THE 707 00:32:20,160 --> 00:32:30,600 ABILITY TO WHICH IS REALLY 708 00:32:48,920 --> 00:32:51,480 IMPORTANT TO INDUSTRY WHEN 709 00:32:51,480 --> 00:32:52,720 THEY'RE STRIKING OUT TO HAVE 710 00:32:52,720 --> 00:32:55,120 CLARITY ON WHAT THE FDA WILL 711 00:32:55,120 --> 00:32:59,080 CONSIDER AS THE KIND OF END 712 00:32:59,080 --> 00:33:00,960 POINT OR THE DAY THAT THAT WOULD 713 00:33:00,960 --> 00:33:03,480 HELP FACILITATE DECISIONS AROUND 714 00:33:03,480 --> 00:33:05,960 DRUG APPROVAL AND LABELING. 715 00:33:05,960 --> 00:33:07,800 SO ON THE NEXT SLIDE, JUST 716 00:33:07,800 --> 00:33:09,440 TALKING A LITTLE BIT ABOUT THE 717 00:33:09,440 --> 00:33:11,800 BIG NUMBERS, TODAY, THE 718 00:33:11,800 --> 00:33:14,760 FOUNDATIONS JUST OVER 719 00:33:14,760 --> 00:33:17,240 25-YEARS-OLD, AND IT HAS RAISED 720 00:33:17,240 --> 00:33:18,200 ABOUT 1.2 BILLION IT'S MORE IF 721 00:33:18,200 --> 00:33:20,280 WE COUNT SOME OF THE ACTIVE 722 00:33:20,280 --> 00:33:23,760 RESOURCES AND WE'VE RAISED A 723 00:33:23,760 --> 00:33:24,480 SUBSTANTIAL INVESTMENTS AND 724 00:33:24,480 --> 00:33:25,880 WE'RE PROUD OF THE FACT THAT THE 725 00:33:25,880 --> 00:33:27,880 VAST MAJORITY OF THOSE DOLLAR 726 00:33:27,880 --> 00:33:30,280 REALLY DO GO DIRECTLY TO SUPPORT 727 00:33:30,280 --> 00:33:32,360 PROGRAMS AND ABOUT 600 OF THEM 728 00:33:32,360 --> 00:33:36,160 TO BE EXACT. 729 00:33:36,160 --> 00:33:37,760 AND THE ACTIVE RESEARCH PROJECTS 730 00:33:37,760 --> 00:33:39,680 WE HAVE GOING ON RIGHT NOW ARE 731 00:33:39,680 --> 00:33:46,080 117 OF THEM, WHICH I THINK IS A 732 00:33:46,080 --> 00:33:47,240 TRIBUTE TO THE SMALL FOUNDATION 733 00:33:47,240 --> 00:33:50,440 AND WE HAVE PEOPLE WHO ARE VERY 734 00:33:50,440 --> 00:33:53,800 ASSERTIVELY INVOLVED IN 735 00:33:53,800 --> 00:34:01,960 SUPPORTING AND I'VE DEFINED HOW 736 00:34:01,960 --> 00:34:04,840 WE DECIDE WHAT PRIVATE-PUBLIC 737 00:34:04,840 --> 00:34:07,840 PARTNERSHIP MAKES SENSE TO US 738 00:34:07,840 --> 00:34:09,800 AND WE HAVE A GOVERNANCE 739 00:34:09,800 --> 00:34:12,360 STRUCTURE THAT HELPS ADJUDICATE 740 00:34:12,360 --> 00:34:14,040 THESE DECISIONS AND WE PUT A 741 00:34:14,040 --> 00:34:16,400 GREAT DEAL OF EFFORTS ON POLICY 742 00:34:16,400 --> 00:34:23,040 AND COMPLIANCE SO WE ARE NOT INA 743 00:34:23,040 --> 00:34:24,360 SITUATION WHERE WE VIOLATE THE 744 00:34:24,360 --> 00:34:26,680 PRINCIPLES OF ETHICAL CONDUCT OR 745 00:34:26,680 --> 00:34:29,080 CONFLICT OF INTEREST AND WE 746 00:34:29,080 --> 00:34:30,480 REALLY OF COURSE ENDORSE AND 747 00:34:30,480 --> 00:34:33,440 SORT POLICIES OF THE NIH AS WELL 748 00:34:33,440 --> 00:34:34,360 IN THAT REGARD. 749 00:34:34,360 --> 00:34:37,000 OUR FUNDRAISING AND RELATIONSHIP 750 00:34:37,000 --> 00:34:38,680 MANAGEMENT IS A VERY IMPORTANT 751 00:34:38,680 --> 00:34:44,760 PART OF OUR ORGANIZATIONS AND WE 752 00:34:44,760 --> 00:34:48,200 ARE PERMIT TODAY SOLICIT FROM 753 00:34:48,200 --> 00:34:50,040 FOUNDATION AND FROM 754 00:34:50,040 --> 00:34:51,600 TRANSFORMATIONAL DONORS AND FROM 755 00:34:51,600 --> 00:34:53,120 GRATEFUL PATIENTS AND TIMES 756 00:34:53,120 --> 00:34:54,880 WE'RE NOT ALLOWED TO SOLICIT 757 00:34:54,880 --> 00:34:57,720 FROM THEM DIRECTLY OF COURSE BUT 758 00:34:57,720 --> 00:35:00,080 WE DO HAVE OPPORTUNITIES TO 759 00:35:00,080 --> 00:35:01,600 RESPOND TO THEIR INTERESTS AND 760 00:35:01,600 --> 00:35:03,480 SOME OF THAT INTEREST HAS LED TO 761 00:35:03,480 --> 00:35:05,640 FUNDING OF CERTAIN HAB TORIES OR 762 00:35:05,640 --> 00:35:06,880 CERTAIN INVESTIGATORS OR 763 00:35:06,880 --> 00:35:08,080 FELLOWSHIPS AT THE NIH SO THAT'S 764 00:35:08,080 --> 00:35:10,320 PART OF OUR SUPPORTING 765 00:35:10,320 --> 00:35:12,760 SCIENTISTS COMPONENT OF WHAT WE 766 00:35:12,760 --> 00:35:15,000 DO AND I MOVE TO -- I WANT TO 767 00:35:15,000 --> 00:35:17,160 MAKE A POINT HERE ABOUT THE LAST 768 00:35:17,160 --> 00:35:19,760 ITEM ON THE SLIDE. 769 00:35:19,760 --> 00:35:21,920 OUR MECHANISMS OF ENGAGEMENT IS 770 00:35:21,920 --> 00:35:24,280 IN THE PRE COMPETITIVE SPACE. 771 00:35:24,280 --> 00:35:27,040 SO WE DON'T BRING TWO PHARMA 772 00:35:27,040 --> 00:35:28,760 COMPANIES TOGETHER AND SHARE 773 00:35:28,760 --> 00:35:30,240 STRAYED SECRETS OR CREATE A 774 00:35:30,240 --> 00:35:31,400 SITUATION THAT WOULD BE 775 00:35:31,400 --> 00:35:33,480 PERCEIVED AS ANTI COMPETITIVE. 776 00:35:33,480 --> 00:35:35,480 WE DO OUR WRACK IN THE MORE 777 00:35:35,480 --> 00:35:37,080 SCIENTIFIC PRE COMPETITIVE 778 00:35:37,080 --> 00:35:39,320 ENVIRONMENT AND IT ALLOWS PEOPLE 779 00:35:39,320 --> 00:35:40,960 TO BE OPEN WITH THEIR 780 00:35:40,960 --> 00:35:43,160 INFORMATION AND THEIR DATA AND 781 00:35:43,160 --> 00:35:46,120 THE MECHANISMS FOR HANDLING 782 00:35:46,120 --> 00:35:47,560 INTELLECTUAL PROPERTY ARE WORKED 783 00:35:47,560 --> 00:35:51,920 OUT BEFORE ANY PROJECTS BEGIN 784 00:35:51,920 --> 00:35:55,600 AND I THINK THIS THIS IS PLACE. 785 00:35:55,600 --> 00:35:58,120 WE HAVE A GOOD TRACK RECORD MAN 786 00:35:58,120 --> 00:35:59,320 NOT AGING WITH THE ETHICAL 787 00:35:59,320 --> 00:36:03,520 FRAMEWORK AND ON THE NEXT SLIDE, 788 00:36:03,520 --> 00:36:09,080 I HAVE HOW THIS PLACE OUT IN 789 00:36:09,080 --> 00:36:10,720 REAL-TIME AND ANYONE CAN COME UP 790 00:36:10,720 --> 00:36:13,320 WITH A REASON TO HAVE A 791 00:36:13,320 --> 00:36:15,720 COLLABORATIVE RESEARCH PROGRAM 792 00:36:15,720 --> 00:36:18,160 INCLUDING GOVERNMENT INDUSTRY 793 00:36:18,160 --> 00:36:21,440 AND AK A DEM I GUESS AND 794 00:36:21,440 --> 00:36:23,120 ESPECIALLY HIGHLIGHT PATIENTS 795 00:36:23,120 --> 00:36:24,400 GROUPS AND YES SOME OF THE 796 00:36:24,400 --> 00:36:27,960 PATIENT ORGANIZATIONS THAT ARE 797 00:36:27,960 --> 00:36:29,000 PARTICULARLY INTERESTED IN 798 00:36:29,000 --> 00:36:30,400 CLINICAL RESEARCH ARE A GREAT 799 00:36:30,400 --> 00:36:32,880 SOURCE OF IDEAS AND CONNECTIONS 800 00:36:32,880 --> 00:36:34,280 THAT HELP BUILD THE CRITICAL 801 00:36:34,280 --> 00:36:37,880 MASS OF PEOPLE COMING TOGETHER 802 00:36:37,880 --> 00:36:42,880 TO FORMULATE A SPECIFIC IDEA AND 803 00:36:42,880 --> 00:36:44,440 THE NIH PROCESS WHERE INSTITUTES 804 00:36:44,440 --> 00:36:48,800 ARE THE NIH DIRECTOR SEES THE 805 00:36:48,800 --> 00:36:50,560 OPPORTUNITY FOR CROSS CUTTING 806 00:36:50,560 --> 00:36:51,720 PROGRAMS OR THE AT ANY TIME A 807 00:36:51,720 --> 00:36:52,680 COLLABORATION CAN CREATE AND 808 00:36:52,680 --> 00:36:54,800 THERE'S AN INTERNAL PROCESS AT 809 00:36:54,800 --> 00:36:57,760 NIH TO MAKE SURE THAT THE 810 00:36:57,760 --> 00:37:02,360 PROPOSAL MEETS NIH CRITERIA AND 811 00:37:02,360 --> 00:37:04,480 ULTIMATELY THEY END UP AT THE 812 00:37:04,480 --> 00:37:08,560 FNIH AND WE HAVE A ROBUST PANEL 813 00:37:08,560 --> 00:37:10,440 OF SCIENTIST AND OUR BOARD OF 814 00:37:10,440 --> 00:37:11,760 DIRECTORS WHO INCLUDE 815 00:37:11,760 --> 00:37:13,520 WORLD-CLASS SCIENTISTS TO REVIEW 816 00:37:13,520 --> 00:37:15,920 THE PROPOSALS AND MAKE DECISIONS 817 00:37:15,920 --> 00:37:18,520 ABOUT WHETHER IT'S A GO OR A 818 00:37:18,520 --> 00:37:19,120 NO-GO PROGRAM. 819 00:37:19,120 --> 00:37:21,040 IF IT'S A GO PROGRAM, WE CREATE 820 00:37:21,040 --> 00:37:24,080 THE GOVERNANCE, RESTORE THE 821 00:37:24,080 --> 00:37:25,480 PARTNERSHIP AS QUICKLY AS WE 822 00:37:25,480 --> 00:37:27,160 CAN, WHICH SOMETIMES ISN'T 823 00:37:27,160 --> 00:37:27,520 QUICK. 824 00:37:27,520 --> 00:37:29,960 WE RAISE THE MONEY IN ORDER TO 825 00:37:29,960 --> 00:37:30,440 INITIATE. 826 00:37:30,440 --> 00:37:34,240 ONE OF OUR PRINCIPLES BECAUSE WE 827 00:37:34,240 --> 00:37:35,600 ARE USING OTHER PEOPLE'S MONEY 828 00:37:35,600 --> 00:37:43,640 TO FUND THIS RESEARCH WE GET US 829 00:37:43,640 --> 00:37:50,560 TO THE FIRST MILESTONE SO WE 830 00:37:50,560 --> 00:37:52,920 HAVE BUT ULTIMATELY THIS PROCESS 831 00:37:52,920 --> 00:37:56,520 RESULTS IN A PROGRAM THAT'S BEEN 832 00:37:56,520 --> 00:38:03,320 VETTED AND TO HIT THE GROUND 833 00:38:03,320 --> 00:38:09,880 RUNNING AND TO MOVE THINGS 834 00:38:09,880 --> 00:38:19,800 FORWARD NOT ALL PARTNERSHIPS 835 00:38:19,800 --> 00:38:20,560 MAKE IT. 836 00:38:20,560 --> 00:38:22,320 FIRST AND FOREMOST WE MAKE SURE 837 00:38:22,320 --> 00:38:23,760 WITH WHAT WE'RE DEALING WITH IS 838 00:38:23,760 --> 00:38:25,800 SOMETHING THIS ADDRESSES 839 00:38:25,800 --> 00:38:27,000 IMPORTANT UNMET NEEDS AND 840 00:38:27,000 --> 00:38:28,880 SOMETHING THAT HAS A HYPO TEN 841 00:38:28,880 --> 00:38:31,320 SHALL FOR TRULY IMPACTING 842 00:38:31,320 --> 00:38:32,520 PATIENTS AND MAKING A DIFFERENCE 843 00:38:32,520 --> 00:38:35,160 FOR THEM AND THAT IS A REALLY 844 00:38:35,160 --> 00:38:36,560 IMPORTANT AREA WHERE THE CONCEPT 845 00:38:36,560 --> 00:38:41,840 OF EQUITY COMES IN AND OUR 846 00:38:41,840 --> 00:38:45,200 WEIGHTED PROBLEMS AND NOT 847 00:38:45,200 --> 00:38:45,920 NECESSARILY PROBLEMS THAT 848 00:38:45,920 --> 00:38:50,440 ADDRESS ALL COMMUNITIES AND WE 849 00:38:50,440 --> 00:38:52,080 ARE GOING TO INCREASE OUR 850 00:38:52,080 --> 00:38:53,840 EMPHASIS ON PROGRAMS THAT 851 00:38:53,840 --> 00:38:54,720 ADDRESS HEALTH EQUITIES AND MAKE 852 00:38:54,720 --> 00:38:59,080 SURE IT'S ONE OF THE SPECIFIC 853 00:38:59,080 --> 00:39:02,400 CRITERIA WHAT WE CONSIDER AS AN 854 00:39:02,400 --> 00:39:03,880 OPPORTUNITY TO AND THE OTHER 855 00:39:03,880 --> 00:39:06,040 CRITERIA ARE A PRETTY OBVIOUS 856 00:39:06,040 --> 00:39:08,320 HERE AND LOCK AT NUMBER FOUR 857 00:39:08,320 --> 00:39:10,040 BECAUSE SOMETIMES WE HAVE A 858 00:39:10,040 --> 00:39:11,560 FANTASTIC IDEA AND WE JUST CAN'T 859 00:39:11,560 --> 00:39:13,720 GET IT FUNDED AND THEY'RE JUST 860 00:39:13,720 --> 00:39:17,160 ISN'T ENOUGH INCENTIVE FROM THE 861 00:39:17,160 --> 00:39:21,640 INDUSTRY PARTNERS AND NIH HAS 862 00:39:21,640 --> 00:39:23,040 COMPETING PRIORITIES AND THIS IS 863 00:39:23,040 --> 00:39:24,880 WHERE WE'RE GOING TO GO FORWARD 864 00:39:24,880 --> 00:39:26,440 AND HOW WE CAN RAISE MONEY IN 865 00:39:26,440 --> 00:39:27,880 OTHER DOMAINS THAT WOULD HELP 866 00:39:27,880 --> 00:39:29,960 GIVE US AT LEAST THE START UP 867 00:39:29,960 --> 00:39:32,880 RESOURCES TO TEST IDEAS OR PILOT 868 00:39:32,880 --> 00:39:34,480 IDEAS AND TO MAKE SURE THAT WE 869 00:39:34,480 --> 00:39:37,080 HAVE PROOF OF CONCEPT BEFORE WE 870 00:39:37,080 --> 00:39:44,560 LULAUNCH INTO A MORE AGGRESSIVE 871 00:39:44,560 --> 00:39:49,200 FUNDRAISING OPPORTUNITY. 872 00:39:49,200 --> 00:39:51,200 THIS SHOWS YOU THAT, AS 873 00:39:51,200 --> 00:39:52,480 RESOURCES BECOME AVAILABLE, SOME 874 00:39:52,480 --> 00:39:56,200 OF THAT MONEY GOES TO THE NIH 875 00:39:56,200 --> 00:39:57,760 INSTITUTES WHO ADDED TO THEIR 876 00:39:57,760 --> 00:40:02,480 OTHER PROGRAMMATIC MONEY AND 877 00:40:02,480 --> 00:40:04,600 MOVE IT OUT TO THE PEOPLE THAT 878 00:40:04,600 --> 00:40:06,120 ARE GETTING FUNDING THROUGH THE 879 00:40:06,120 --> 00:40:08,720 MANY MECHANISMS THAT WALTER JUST 880 00:40:08,720 --> 00:40:11,040 SHOWED US AND THAT HAPPENS 881 00:40:11,040 --> 00:40:13,320 THROUGH THE USUALLY CUSTOMARY 882 00:40:13,320 --> 00:40:16,680 NIH MECHANISMS BUT FNIH ALSO 883 00:40:16,680 --> 00:40:17,880 PROVIDES GRANTS TO SCIENTISTS 884 00:40:17,880 --> 00:40:19,160 AND WE HAVE CONTRACTS WITH 885 00:40:19,160 --> 00:40:20,720 VARIOUS RESEARCH ORGANIZATIONS 886 00:40:20,720 --> 00:40:23,680 AND WE SUPPORT DATA COORDINATING 887 00:40:23,680 --> 00:40:26,800 CENTERS AND OTHER KINDS OF 888 00:40:26,800 --> 00:40:28,360 INVESTIGATORS TO PARTICIPATE IN 889 00:40:28,360 --> 00:40:29,880 THE COLLABORATION. 890 00:40:29,880 --> 00:40:32,400 ALL OF OUR WORK IS DONE IN AN 891 00:40:32,400 --> 00:40:34,520 OPEN PLATFORM MEANING THE DATA 892 00:40:34,520 --> 00:40:36,320 ARE SHARED AS PART OF THE 893 00:40:36,320 --> 00:40:38,680 ADVANTAGE TO THIS BEING PRE 894 00:40:38,680 --> 00:40:40,600 COMPETITIVE THAT WE HAVE THE 895 00:40:40,600 --> 00:40:42,040 OPPORTUNITY TO MAKE WHAT WE'RE 896 00:40:42,040 --> 00:40:44,080 DOING VISIBLE SO OTHERS CAN 897 00:40:44,080 --> 00:40:50,680 LEARN FROM IT AND AND I HAVE A 898 00:40:50,680 --> 00:40:53,720 WONDERFUL EXPERIENCE AND RELATED 899 00:40:53,720 --> 00:41:00,080 TO THE CONSEQUENCES OF REPEATED 900 00:41:00,080 --> 00:41:01,000 EXPOSURES TO CORONAVIRUS 901 00:41:01,000 --> 00:41:02,880 VACCINES AND TO TALK AND SHARE 902 00:41:02,880 --> 00:41:03,840 THIS ELEGANT WORK. 903 00:41:03,840 --> 00:41:07,960 IT WAS JUST REFRESHING TO ME TO 904 00:41:07,960 --> 00:41:11,280 PARTICIPATE OPEN EXCHANGE AND 905 00:41:11,280 --> 00:41:13,680 SCIENTIFIC COMMUNICATION WASSEN 906 00:41:13,680 --> 00:41:17,320 LIGHT EPING AND I THINK THAT 907 00:41:17,320 --> 00:41:20,320 VERY INDICATIVE OF THE KIND 908 00:41:20,320 --> 00:41:25,360 ATMOSPHERE AND WE TRY TO AND THE 909 00:41:25,360 --> 00:41:29,520 NEXT SLIDE, JUST TO GIVE YOU A 910 00:41:29,520 --> 00:41:36,960 LITTLE BIT. 911 00:41:36,960 --> 00:41:38,880 RIGHT NOW WE HAVE $445 MILLION 912 00:41:38,880 --> 00:41:40,640 IN PROGRAMS IN PROGRESS. 913 00:41:40,640 --> 00:41:42,760 SO THAT IS A LOT OF PROJECTS 914 00:41:42,760 --> 00:41:44,680 THAT ARE GOING ON AND THESE ARE 915 00:41:44,680 --> 00:41:45,840 BIG PROJECTS. 916 00:41:45,840 --> 00:41:47,880 YOU'VE HEARD WALTER MENTION A 917 00:41:47,880 --> 00:41:49,040 COUPLE OF THEM. 918 00:41:49,040 --> 00:41:51,200 THE FOUR BIG CATEGORIES FOR US 919 00:41:51,200 --> 00:41:53,760 RIGHT NOW ARE THE SO-CALLED AMP 920 00:41:53,760 --> 00:41:54,040 PROGRAMS. 921 00:41:54,040 --> 00:41:56,720 AND KIND OF AN ACCELERATED 922 00:41:56,720 --> 00:41:58,640 OPPORTUNITY TO DEFINE NEW 923 00:41:58,640 --> 00:42:03,920 TARGETS OR NEW APPROACHES TAG 924 00:42:03,920 --> 00:42:06,640 EIGHT INDICATION AND MEDICATIONS 925 00:42:06,640 --> 00:42:10,240 THAT WOULD SELECT THAT TARGET 926 00:42:10,240 --> 00:42:11,320 AND THOSE PROGRAMS, THERE ARE 927 00:42:11,320 --> 00:42:12,960 EIGHT OF THEM RIGHT NOW THEY ARE 928 00:42:12,960 --> 00:42:16,800 LONG STANDING AND THEY HAVE A 929 00:42:16,800 --> 00:42:19,080 VERY WONDERFUL TRACK RECORD OF 930 00:42:19,080 --> 00:42:20,680 CONTRIBUTION AND THE OTHER 931 00:42:20,680 --> 00:42:25,480 LONGSTANDING PROGRAM IS THE 932 00:42:25,480 --> 00:42:26,440 BIOMARKERS PROGRAM AND THIS IS A 933 00:42:26,440 --> 00:42:29,400 PROGRAM THAT LOOKS FOR THE 934 00:42:29,400 --> 00:42:30,720 PROGNOSTIC BIOMARKERS THAT HELP 935 00:42:30,720 --> 00:42:32,480 DETERMINE WHO IS AT RISK FOR 936 00:42:32,480 --> 00:42:35,040 DISEASE PROGRESSION, FOR 937 00:42:35,040 --> 00:42:37,800 EXAMPLE, SOMETHING LIKE NON 938 00:42:37,800 --> 00:42:38,600 ALCOHOLIC LIVER DISEASE WHERE 939 00:42:38,600 --> 00:42:40,400 IT'S IMPORTANT TO KNOW WHO IS 940 00:42:40,400 --> 00:42:42,320 MOST LIKELY TO PROGRESS TO 941 00:42:42,320 --> 00:42:43,480 CIRRHOSIS SO THAT THOSE ARE THE 942 00:42:43,480 --> 00:42:46,360 PEOPLE THAT YOU WOULD WANT TO 943 00:42:46,360 --> 00:42:47,680 FOCUS INTERVENTION ON AND NOT 944 00:42:47,680 --> 00:42:48,960 FORCE OTHER PEOPLE TO HAVE A BUY 945 00:42:48,960 --> 00:42:52,480 ON SEE OR UNNECESSARY INVASIVE 946 00:42:52,480 --> 00:42:54,360 PROCEDURES BECAUSE THEY'RE NOT 947 00:42:54,360 --> 00:43:02,120 GOING TO BE AT RISK FOR 948 00:43:02,120 --> 00:43:12,320 PROGRESSION. 949 00:43:14,440 --> 00:43:16,080 IF YOU WERE STUDYING A PROBLEM 950 00:43:16,080 --> 00:43:17,840 WITH A LONG LIFELINE, THE 951 00:43:17,840 --> 00:43:19,880 STUDIES WOULD HAVE TO GO ON 952 00:43:19,880 --> 00:43:22,240 FOREVER TO SHOW HARD 953 00:43:22,240 --> 00:43:24,080 DEMONSTRATIONS OF DECREASED 954 00:43:24,080 --> 00:43:26,080 MORTALITY OR DECREASED LONG-TERM 955 00:43:26,080 --> 00:43:29,160 MORBIDITY AND IF YOU HAVE A 956 00:43:29,160 --> 00:43:30,640 SURROGATE BIOMARKER THAT IS 957 00:43:30,640 --> 00:43:32,720 HIGHLY CORRELATED WITH THOSE END 958 00:43:32,720 --> 00:43:34,040 POINTS AND YOU HAVE THE RIGHT 959 00:43:34,040 --> 00:43:36,080 DATA ON THE RIGHT 960 00:43:36,080 --> 00:43:38,320 STANDARDIZATION TO USING THAT 961 00:43:38,320 --> 00:43:40,760 END POINT YOU CAN CONDUCT 962 00:43:40,760 --> 00:43:42,480 CLINICAL TRIALS AND GET DRUG 963 00:43:42,480 --> 00:43:45,400 APPROVAL BASED ON THAT SURROGATE 964 00:43:45,400 --> 00:43:46,720 MARKER OF SUCCESS AND THAT'S 965 00:43:46,720 --> 00:43:48,840 SOMETHING THAT IS SCIENTIFICALLY 966 00:43:48,840 --> 00:43:54,320 SIMPLE MINDED BUT REALLY HARD TO 967 00:43:54,320 --> 00:44:04,720 DO AND -- WHICH ARE FOUR 968 00:44:09,160 --> 00:44:14,160 CATEGORIES OF PROGRAMS THAT ARE 969 00:44:14,160 --> 00:44:14,880 PRIMARILY FUNDED THROUGH THE 970 00:44:14,880 --> 00:44:16,320 GATES FOUNDATION AND PARTNERS 971 00:44:16,320 --> 00:44:23,040 THAT ARE GLOBAL PORTFOLIO AND I 972 00:44:23,040 --> 00:44:24,440 JUST WANT TO MAKE THE POINT THAT 973 00:44:24,440 --> 00:44:27,560 WE'RE NOT TOTALLY FOCUSED ON THE 974 00:44:27,560 --> 00:44:28,360 DEVELOPED WORLD AND WE'RE 975 00:44:28,360 --> 00:44:33,720 THINKING ABOUT HOW WE CAN BRING 976 00:44:33,720 --> 00:44:35,520 THE PROCESS NO A EQUITABLE 977 00:44:35,520 --> 00:44:37,520 MANNER ACROSS ALL OF OUR DISEASE 978 00:44:37,520 --> 00:44:42,160 CATEGORIES AS WE EVOLVED THE 979 00:44:42,160 --> 00:44:42,480 FNIH. 980 00:44:42,480 --> 00:44:44,280 NEXT SLIDE, PLEASE. 981 00:44:44,280 --> 00:44:45,800 AND I THINK WE CAN JUST SKIP 982 00:44:45,800 --> 00:44:47,480 THOSE AND I'VE MENTIONED THESE 983 00:44:47,480 --> 00:44:48,680 BEFORE WELL MAYBE JUST QUICKLY 984 00:44:48,680 --> 00:44:50,720 TO SHOW YOU THE SCALE OF 985 00:44:50,720 --> 00:44:52,000 INVESTMENTS IN THESE VARIOUS 986 00:44:52,000 --> 00:44:53,280 PROJECTS SO FOR EXAMPLE, I 987 00:44:53,280 --> 00:44:55,640 MENTIONED THE BIOMARKERS 988 00:44:55,640 --> 00:45:01,680 CONSORTIUM AND WE HAVE THE 989 00:45:01,680 --> 00:45:03,720 INVESTED IN THAT AND IT PAYS FOR 990 00:45:03,720 --> 00:45:05,040 IMAGING STUDIES THAT MIGHT NOT 991 00:45:05,040 --> 00:45:06,480 BE DONE IN THE COURSE OF A 992 00:45:06,480 --> 00:45:13,120 CLINICAL TRIAL OR A CLINICAL 993 00:45:13,120 --> 00:45:23,600 INVESTIGATION TO DETERMINE IF 994 00:45:26,200 --> 00:45:27,640 SOMETHING IS AN EFFECTIVE 995 00:45:27,640 --> 00:45:34,480 BIOMARKER OR NOT SO, THREE 996 00:45:34,480 --> 00:45:36,880 MOVEMENTS ABOUT WHAT IS THE 997 00:45:36,880 --> 00:45:38,480 STANDARD DATA SET AND HOW WE CAN 998 00:45:38,480 --> 00:45:39,480 POOL THIS TOGETHER TO ACHIEVE 999 00:45:39,480 --> 00:45:40,880 THE KIND OF STATISTICAL POWER 1000 00:45:40,880 --> 00:45:45,040 THAT WOULD HE CAN SELL RATE OUR 1001 00:45:45,040 --> 00:45:46,400 DECISION-MAKING. 1002 00:45:46,400 --> 00:45:47,960 NEXT SLIDE, PLEASE. 1003 00:45:47,960 --> 00:45:49,560 I'M GOING TO END WITH A LITTLE 1004 00:45:49,560 --> 00:45:52,960 BIT OF IN-HOUSE PERSPECTIVE 1005 00:45:52,960 --> 00:45:54,480 BECAUSE I AM DEFINITELY STILL IN 1006 00:45:54,480 --> 00:46:01,960 THE LEARNING CURVE AND I'M NEW. 1007 00:46:01,960 --> 00:46:07,040 WE WE HAVE THE SAME CHALLENGES 1008 00:46:07,040 --> 00:46:12,680 THAT BIG ORGANIZATIONS HAVE AND 1009 00:46:12,680 --> 00:46:14,480 AND I'M NOT SURE MANY PATIENTS 1010 00:46:14,480 --> 00:46:15,520 INCLUSION AND NOT JUST IN TERMS 1011 00:46:15,520 --> 00:46:19,160 OF WHO WE ARE AND IN THE WORK WE 1012 00:46:19,160 --> 00:46:22,400 DO SO I'M PLEASED SO SAY THE 1013 00:46:22,400 --> 00:46:28,560 BIOMARKERS CONSORTIUM SPENT A 1014 00:46:28,560 --> 00:46:30,080 EXECUTIVE COUNTY MEETING TO MAKE 1015 00:46:30,080 --> 00:46:32,600 SURE OUR GOVERNANCE MODELS ARE 1016 00:46:32,600 --> 00:46:34,200 EQUITABLE AND HOW DO WE INCLUDE 1017 00:46:34,200 --> 00:46:36,480 MORE PATIENT ORGANIZATIONS IN 1018 00:46:36,480 --> 00:46:37,480 THAT PROCESS BECAUSE OBVIOUSLY 1019 00:46:37,480 --> 00:46:40,600 IN THE SENSE THERE'S A PAY TO 1020 00:46:40,600 --> 00:46:44,640 PLAY PARTICIPATION REQUIREMENT 1021 00:46:44,640 --> 00:46:49,120 AND PEOPLE WHO SMALL 1022 00:46:49,120 --> 00:46:50,160 ORGANIZATIONS REALLY HAVE A 1023 00:46:50,160 --> 00:46:53,520 STRUGGLE WITH THAT AND YET THEIR 1024 00:46:53,520 --> 00:46:55,040 PERSPECTIVES AND KNOWLEDGE IS SO 1025 00:46:55,040 --> 00:46:56,360 RELEVANT TO HOW WE DESIGN THE 1026 00:46:56,360 --> 00:47:06,840 PROGRAMS AND HOW WE SUFFICE TO 1027 00:47:14,120 --> 00:47:15,480 SAY WE ARE A SMALL ENOUGH 1028 00:47:15,480 --> 00:47:16,680 ORGANIZATION THAT WE CAN AFFORD 1029 00:47:16,680 --> 00:47:19,920 TO TEST PEOPLE SO WE ARE 1030 00:47:19,920 --> 00:47:21,000 REQUIRING PEOPLE TO BE TESTED 1031 00:47:21,000 --> 00:47:22,760 EACH WEEK THEY COME TO THE 1032 00:47:22,760 --> 00:47:24,400 OFFICE AND LIKE EVERYONE, THIS 1033 00:47:24,400 --> 00:47:26,960 IS BEEN A REALLY DIFFICULT TIME 1034 00:47:26,960 --> 00:47:31,160 FOR RECRUITING AND RETAINING THE 1035 00:47:31,160 --> 00:47:32,840 PROFESSIONALS WE NEED OF HIGH 1036 00:47:32,840 --> 00:47:39,120 PREPORTION OF OUR TEAM HAVE 1037 00:47:39,120 --> 00:47:41,240 PHDs BUT WE HAVE OTHER PROGRAM 1038 00:47:41,240 --> 00:47:42,720 SUPPORT, PROFESSIONALS THAT WE 1039 00:47:42,720 --> 00:47:45,080 CAN'T LIVE WITHOUT AND SO WE ARE 1040 00:47:45,080 --> 00:47:46,640 BROADENING OUR RECRUITMENT TO A 1041 00:47:46,640 --> 00:47:48,520 NATIONAL BASIS AND WE ARE 1042 00:47:48,520 --> 00:47:49,560 LEARNING LIKE EVERYONE ELSE TO 1043 00:47:49,560 --> 00:47:51,680 WORK REMOTELY AND SO ON AND SO 1044 00:47:51,680 --> 00:47:54,280 FOURTH SO THIS IS A LITTLE BIT 1045 00:47:54,280 --> 00:47:54,920 OF A PLUG HERE BECAUSE IF YOU 1046 00:47:54,920 --> 00:47:57,120 KNOW SOMEONE WHO IS REALLY 1047 00:47:57,120 --> 00:47:58,720 INTERESTED TO THIS KIND OF 1048 00:47:58,720 --> 00:48:00,040 COLLABORATIVE RESEARCH, ASK THEM 1049 00:48:00,040 --> 00:48:06,400 TO CHECK OUT OUR WEBSITE BECAUSE 1050 00:48:06,400 --> 00:48:08,600 WE ARE RECRUITING AND WE LOVE TO 1051 00:48:08,600 --> 00:48:10,000 THE THE BEST AND BRIGHTEST 1052 00:48:10,000 --> 00:48:12,200 TALENT AND THE FINAL SLIDE, THIS 1053 00:48:12,200 --> 00:48:13,160 IS IMPORTANT. 1054 00:48:13,160 --> 00:48:15,520 I WANTED TO MENTION THAT I SAID 1055 00:48:15,520 --> 00:48:18,240 SCIENTISTS AND SCIENCE BUT WE 1056 00:48:18,240 --> 00:48:20,760 ALSO HAVE THIS LONG STANDING 1057 00:48:20,760 --> 00:48:22,880 COMMITMENT TO SUPPORTING 1058 00:48:22,880 --> 00:48:24,280 TRACTOR-TRAILER CARE OF OUR 1059 00:48:24,280 --> 00:48:25,440 PATIENTS AND ONE OF THE WAYS 1060 00:48:25,440 --> 00:48:27,480 THAT WE'VE DONE THAT IS THROUGH 1061 00:48:27,480 --> 00:48:30,600 THE STAFF OR FOUNDATION IS TO 1062 00:48:30,600 --> 00:48:32,400 SUPPORT THE FAMILY LODGE ON THE 1063 00:48:32,400 --> 00:48:35,240 NIH CAMPUS WHICH IS LIKE THE 1064 00:48:35,240 --> 00:48:36,600 CHILDREN'S AND IT'S AN 1065 00:48:36,600 --> 00:48:37,760 OPPORTUNITY FOR THE FAMILIES OF 1066 00:48:37,760 --> 00:48:40,040 PEOPLE WHO ARE RECEIVING CARE AT 1067 00:48:40,040 --> 00:48:42,760 THE NIH CLINICAL CENTERS TO HAVE 1068 00:48:42,760 --> 00:48:48,000 A COMFORTABLE AND SUPPORTIVE 1069 00:48:48,000 --> 00:48:49,800 ENVIRONMENT DURING THEIR 1070 00:48:49,800 --> 00:48:51,680 OTHERWISE DIFFICULT CHALLENGE OF 1071 00:48:51,680 --> 00:48:57,280 RECEIVING CARE FOR COMPLICATED 1072 00:48:57,280 --> 00:48:57,560 DISEASES. 1073 00:48:57,560 --> 00:48:59,960 WE ALSO ANNOUNCED THE ESTATE 1074 00:48:59,960 --> 00:49:01,240 GIFT WHICH MENTIONED IS ONE OF 1075 00:49:01,240 --> 00:49:03,520 THE WAYS THAT WE SUPPORT 1076 00:49:03,520 --> 00:49:10,600 SCIENTISTS BY SUPPORTING Dr. 1077 00:49:10,600 --> 00:49:18,040 BONOMAN RESEARCH ON MUSCULAR 1078 00:49:18,040 --> 00:49:20,880 DYSTROPHY AND WE WILL BE WORKING 1079 00:49:20,880 --> 00:49:22,280 TO INCREASE THIS GIVING GOING 1080 00:49:22,280 --> 00:49:22,560 FORWARD. 1081 00:49:22,560 --> 00:49:27,320 AND FINALLY ON MY LAST SLIDE, I 1082 00:49:27,320 --> 00:49:30,680 JUST MENTIONED MY OWN PRIORITIES 1083 00:49:30,680 --> 00:49:32,000 AS ANNAN BOARDING PERSON AND 1084 00:49:32,000 --> 00:49:34,320 PART OF THAT IS LISTENING AND 1085 00:49:34,320 --> 00:49:35,360 LEARNING AND I HAVE REACHED OUT 1086 00:49:35,360 --> 00:49:37,360 TO VARIOUS PATIENT ORGANIZATIONS 1087 00:49:37,360 --> 00:49:39,280 TO HAVE THESE KINDS OF 1088 00:49:39,280 --> 00:49:39,800 CONVERSATIONS. 1089 00:49:39,800 --> 00:49:47,600 I'M INTERESTED TOOULD BE HELPFUR 1090 00:49:47,600 --> 00:49:48,880 CURRENTLY BEING HELP AND WHAT 1091 00:49:48,880 --> 00:49:50,560 SHOULD WE BE DOING BETTER AND 1092 00:49:50,560 --> 00:49:55,760 HOW CAN WE PARTICIPATE IN 1093 00:49:55,760 --> 00:49:57,640 PATIENT ORGANIZATIONS NOT JUST 1094 00:49:57,640 --> 00:50:00,400 IN THE DC AREA BUT OBVIOUSLY 1095 00:50:00,400 --> 00:50:06,040 NATIONALLY AND HOPEFULLY AT SOME 1096 00:50:06,040 --> 00:50:07,840 POINT ORGANIZATIONALLY AND WE 1097 00:50:07,840 --> 00:50:09,480 ARE REFRESHING OUR STRATEGY AND 1098 00:50:09,480 --> 00:50:11,320 I'VE MENTIONED THE WORKPLACE AND 1099 00:50:11,320 --> 00:50:16,440 CULTURE ISSUES THAT ARE COMMON 1100 00:50:16,440 --> 00:50:18,440 TO US IN THE ORGANIZATIONAL 1101 00:50:18,440 --> 00:50:19,720 WORLD AND OUR TEAMS ARE 1102 00:50:19,720 --> 00:50:21,120 EVERYTHING AND IF WE DON'T DO 1103 00:50:21,120 --> 00:50:24,560 THAT RIGHT WE CAN'T BE 1104 00:50:24,560 --> 00:50:27,000 SUCCESSFUL AND IN TERMS OF 1105 00:50:27,000 --> 00:50:27,800 SCIENTIFIC PARTNERSHIP 1106 00:50:27,800 --> 00:50:29,840 INVESTMENTS OBVIOUSLY WE TEND TO 1107 00:50:29,840 --> 00:50:31,600 CONTINUE THE AMPS AND THE 1108 00:50:31,600 --> 00:50:40,520 BIOMARKERS CO CONSORTIUM AS WELS 1109 00:50:40,520 --> 00:50:44,680 OUR CONTRIBUTION IN THE AREA OF 1110 00:50:44,680 --> 00:50:45,640 DIAGNOSTICS AND VACCINES AND 1111 00:50:45,640 --> 00:50:46,800 WE'LL CONTINUE AND IT'S NOT IN 1112 00:50:46,800 --> 00:50:49,680 THE REAR VIEW MIRROR FOR US SO 1113 00:50:49,680 --> 00:50:52,560 WE ARE VERY MUCH CONTINUING TO 1114 00:50:52,560 --> 00:50:53,200 BE INVOLVED. 1115 00:50:53,200 --> 00:50:55,200 WE JUST HAD THE EXECUTIVE 1116 00:50:55,200 --> 00:50:56,000 COMMITTEE MEETING THIS MORNING 1117 00:50:56,000 --> 00:51:01,920 WITH THE DIRECTOR OF THE NIH AND 1118 00:51:01,920 --> 00:51:02,760 THE COR TEAMS AND WE ARE STILL 1119 00:51:02,760 --> 00:51:04,360 WORKING ON THIS PANDEMIC 1120 00:51:04,360 --> 00:51:07,320 DILIGENTLY AND FINALLY, I THINK 1121 00:51:07,320 --> 00:51:09,000 IN THIS ERA WHERE THE TRUST AND 1122 00:51:09,000 --> 00:51:11,000 SCIENCE IS AT AN ALL-TIME LOW, 1123 00:51:11,000 --> 00:51:12,680 IT'S REALLY IMPORTANT THAT ALL 1124 00:51:12,680 --> 00:51:16,560 OF US, IN THE HEALTH COMMUNITY 1125 00:51:16,560 --> 00:51:18,520 STANDS STRONG ON THE PRINCIPLES 1126 00:51:18,520 --> 00:51:21,360 OF SCIENCE AND THE IMPORTANCE OF 1127 00:51:21,360 --> 00:51:23,400 SCIENCE AND CLINICAL RESEARCH 1128 00:51:23,400 --> 00:51:26,600 AND THAT WE KIND OF WORK 1129 00:51:26,600 --> 00:51:28,520 TOGETHER TO FIND WAYS TO 1130 00:51:28,520 --> 00:51:30,200 EMPHASIZE HOW IMPORTANT ALL OF 1131 00:51:30,200 --> 00:51:31,920 THIS IS TO PEOPLE AND TO 1132 00:51:31,920 --> 00:51:33,000 PATIENTS EVERYWHERE. 1133 00:51:33,000 --> 00:51:35,000 SO I'LL STOP THERE AND ON MY 1134 00:51:35,000 --> 00:51:36,520 LAST SLIDE I HAVE MY E-MAIL 1135 00:51:36,520 --> 00:51:41,680 ADDRESS SO IF YOU HAVE SOME 1136 00:51:41,680 --> 00:51:44,280 IDEAS, COMMENTS CRITICISM OR 1137 00:51:44,280 --> 00:51:45,320 COMPLIMENTS, GET IN TOUCH WITH 1138 00:51:45,320 --> 00:51:50,120 ME AND I'LL DO MY BEST TO BE 1139 00:51:50,120 --> 00:51:50,400 RESPONSIVE. 1140 00:51:50,400 --> 00:51:50,720 THANK YOU. 1141 00:51:50,720 --> 00:51:55,560 >> THANK YOU SO MUCH Dr. 1142 00:51:55,560 --> 00:51:57,560 GERBERDING. 1143 00:51:57,560 --> 00:51:59,200 UNFORTUNATELY, Dr. KOROSHETZ 1144 00:51:59,200 --> 00:52:00,760 HAD TO RUN FOR ANOTHER MEETING 1145 00:52:00,760 --> 00:52:02,640 THAT GOTTA JUSTED BUT HI, NICE 1146 00:52:02,640 --> 00:52:05,320 TO MEET YOU, I'M Dr. SAMANTHA 1147 00:52:05,320 --> 00:52:06,960 WHITE OUR RUN OUR BRANCH HERE 1148 00:52:06,960 --> 00:52:09,880 AND I REALLY ENJOYED YOUR TALK. 1149 00:52:09,880 --> 00:52:12,200 I MEAN IT REALLY RESINATES WITH 1150 00:52:12,200 --> 00:52:17,120 ME IN THE ENGAGEMENT AND WITH 1151 00:52:17,120 --> 00:52:19,080 THE FORUM IN OUR THEME OF 1152 00:52:19,080 --> 00:52:20,400 PROGRESS THROUGH PARTNERSHIPS, 1153 00:52:20,400 --> 00:52:23,320 WHICH YOU KNOW VERY MUCH ABOUT. 1154 00:52:23,320 --> 00:52:25,240 SO, I WANT TO ENCOURAGE EVERYONE 1155 00:52:25,240 --> 00:52:27,280 TO POST QUESTIONS IN THE CHAT SO 1156 00:52:27,280 --> 00:52:32,520 THAT I CAN HELP Dr. GERBERDING 1157 00:52:32,520 --> 00:52:36,200 GO THROUGH A BRIEF Q&A PERIOD. 1158 00:52:36,200 --> 00:52:39,800 I SEE ONE WE GOT. 1159 00:52:39,800 --> 00:52:41,680 WHAT ELEMENT MAKES YOU THE MOST 1160 00:52:41,680 --> 00:52:44,040 EXCITED ABOUT WORK AT THE FNIH 1161 00:52:44,040 --> 00:52:48,040 IN THE NEXT SIX TO 12 MONTHS? 1162 00:52:48,040 --> 00:52:50,680 >> WOW. 1163 00:52:50,680 --> 00:52:53,280 WELL, FIRST, LET ME JUST SAY, 1164 00:52:53,280 --> 00:52:54,960 THE REASON I AM GOING TO HAVE A 1165 00:52:54,960 --> 00:52:56,840 HARD TIME ANSWERING THIS IT'S 1166 00:52:56,840 --> 00:53:00,920 JUST LIKE BEING IN A CANDY STORE 1167 00:53:00,920 --> 00:53:01,760 OF SCIENCE. 1168 00:53:01,760 --> 00:53:04,160 OF COURSE I'VE BEEN IN THE 1169 00:53:04,160 --> 00:53:09,240 SCIENTIFIC ENVIRONMENT MY ENTIRE 1170 00:53:09,240 --> 00:53:10,600 CAREER BUT THIS IS CLOSE TO THE 1171 00:53:10,600 --> 00:53:12,280 SCIENTISTS AND THE DISCOVER SO 1172 00:53:12,280 --> 00:53:14,000 TO SPEAK SO IT'S JUST THRILLING 1173 00:53:14,000 --> 00:53:16,640 TO BE BACK IN THAT AND BE 1174 00:53:16,640 --> 00:53:17,360 EXPERIENCING THAT. 1175 00:53:17,360 --> 00:53:19,680 I THINK IN TERMS OF WHAT CAN WE 1176 00:53:19,680 --> 00:53:21,240 ACCOMPLISH IN THE NEXT SIX 1177 00:53:21,240 --> 00:53:26,720 MONTHS, I WOULD HAVE TO SAY THAT 1178 00:53:26,720 --> 00:53:28,920 THERE ARE FRONTIERS ON THE 1179 00:53:28,920 --> 00:53:30,720 BIOMARKERS' HORIZON THAT ARE 1180 00:53:30,720 --> 00:53:32,120 EXCITING AND I PROBABLY DON'T 1181 00:53:32,120 --> 00:53:33,560 WANT TO SAY SPECIFICALLY WHICH 1182 00:53:33,560 --> 00:53:38,320 ONCE I'M TALKING ABOUT BECAUSE 1183 00:53:38,320 --> 00:53:40,320 IT MIGHT NOT BE READY FOR PRIME 1184 00:53:40,320 --> 00:53:42,320 TIME BUT THERE ARE IMPORTANT 1185 00:53:42,320 --> 00:53:46,480 ADVANCES IN THOSE SPACES AND I 1186 00:53:46,480 --> 00:53:55,800 THINK OF COURSE, WE HAVE THE ON 1187 00:53:55,800 --> 00:53:56,680 GOING WORK AND WHETHER OR NOT 1188 00:53:56,680 --> 00:53:58,680 WE'LL GET TO A POINT WHERE WE 1189 00:53:58,680 --> 00:54:02,280 HAVE THEIR PIECE FOR LONG COVID 1190 00:54:02,280 --> 00:54:03,200 SO STAY TUNED. 1191 00:54:03,200 --> 00:54:04,040 >> STAY TUNED. 1192 00:54:04,040 --> 00:54:04,880 WE WILL. 1193 00:54:04,880 --> 00:54:06,080 SO, ANOTHER QUESTION IS COMING 1194 00:54:06,080 --> 00:54:08,680 IN FROM ONE OF OUR EXECUTIVE 1195 00:54:08,680 --> 00:54:12,080 COMMITTEE MEETING MEMBERS AND 1196 00:54:12,080 --> 00:54:13,240 SHE'S THANKS YOU FOR THE 1197 00:54:13,240 --> 00:54:15,800 PRESENTATION AND DO YOU SEE THE 1198 00:54:15,800 --> 00:54:17,680 FNIH HELPING TO ENGAGE YOUNG 1199 00:54:17,680 --> 00:54:21,400 MINDS IN SCIENCE FOR RESEARCH? 1200 00:54:21,400 --> 00:54:23,880 >> YOU KNOW, BECAUSE THE 1201 00:54:23,880 --> 00:54:25,560 PIPELINE OF SCIENTISTS IS SO 1202 00:54:25,560 --> 00:54:28,280 IMPORTANT TO THE NIH MISSION, IS 1203 00:54:28,280 --> 00:54:31,720 CLEARLY IN SCOPE FOR US AND WE 1204 00:54:31,720 --> 00:54:33,440 DO SOME SMALL THINGS IN THAT 1205 00:54:33,440 --> 00:54:35,160 REGARD BUT WE DON'T HAVE A LARGE 1206 00:54:35,160 --> 00:54:37,120 PROGRAM THERE AND THIS IS ONE OF 1207 00:54:37,120 --> 00:54:39,680 THOSE AREAS WHERE AS WE WORK ON 1208 00:54:39,680 --> 00:54:43,560 OUR STRATEGIES, AND THINK ABOUT 1209 00:54:43,560 --> 00:54:46,920 HOW WE GROW THE FOUNDATION, 1210 00:54:46,920 --> 00:54:48,680 FINDING PEOPLE WHO ARE 1211 00:54:48,680 --> 00:54:54,240 SPECIFICALLY INTERESTED IN THAT 1212 00:54:54,240 --> 00:54:56,040 AND WANTING TO SUPPORT STEM 1213 00:54:56,040 --> 00:54:58,720 EDUCATION OR JUST BASIC LIT RA 1214 00:54:58,720 --> 00:55:00,240 SHE IN SCIENCE I THINK THAT'S A 1215 00:55:00,240 --> 00:55:02,000 REALLY IMPORTANT OPPORTUNITY. 1216 00:55:02,000 --> 00:55:04,960 ONE OF MY FANTASIES IS TO 1217 00:55:04,960 --> 00:55:06,840 PERHAPS TRY TO BE PART OF A 1218 00:55:06,840 --> 00:55:09,480 CONVENING OF A COALITION 6 OF 1219 00:55:09,480 --> 00:55:12,080 PEOPLE WHO ARE AS INTERESTED IN 1220 00:55:12,080 --> 00:55:15,320 THE TRUST ISSUES AS I AM AND 1221 00:55:15,320 --> 00:55:17,360 THINK ABOUT HOW KIDS CAN BE PART 1222 00:55:17,360 --> 00:55:24,200 OF THAT CONVERSATION BECAUSE IF 1223 00:55:24,200 --> 00:55:25,880 WE CAN BRING PEOPLE UP IN A 1224 00:55:25,880 --> 00:55:27,600 MANNER FOR THEIR HEALTH LITERACY 1225 00:55:27,600 --> 00:55:29,640 FOR THAT MATTER WE'LL HAVE A NEW 1226 00:55:29,640 --> 00:55:31,000 GENERATION THAT'S BETTER 1227 00:55:31,000 --> 00:55:33,600 EQUIPPED TO PARTICIPATE IN THESE 1228 00:55:33,600 --> 00:55:35,480 BROADER SOCIETAL CHALLENGES THAT 1229 00:55:35,480 --> 00:55:35,800 WE FACE. 1230 00:55:35,800 --> 00:55:37,520 >> YEAH, ABSOLUTELY. 1231 00:55:37,520 --> 00:55:39,680 SO ANOTHER QUESTION THAT'S COME 1232 00:55:39,680 --> 00:55:42,240 IN FROM LOUIS MAZWAY AND A POLL 1233 00:55:42,240 --> 00:55:47,280 GOES IF I MISPRONOUNCE ANYONE'S 1234 00:55:47,280 --> 00:55:47,480 NAME. 1235 00:55:47,480 --> 00:55:49,400 HE IS LOOKING FOR CLARIFICATION. 1236 00:55:49,400 --> 00:55:52,360 WHY WOULD SOMEONE GIFT TO FNIH 1237 00:55:52,360 --> 00:55:54,800 AS OPPOSED TO A PARTICULAR 1238 00:55:54,800 --> 00:55:56,200 HOSPITAL OR HOSPITAL SYSTEM OR 1239 00:55:56,200 --> 00:55:57,400 PARTICULAR NON PROFITS. 1240 00:55:57,400 --> 00:55:59,200 CAN YOU HELP THEM UNDERSTAND 1241 00:55:59,200 --> 00:56:01,920 KIND OF WHERE FNIH HANGS OUT IN 1242 00:56:01,920 --> 00:56:02,680 THE LANDSCAPE? 1243 00:56:02,680 --> 00:56:07,120 >> YEAH, I THINK OUR FOCUS IS ON 1244 00:56:07,120 --> 00:56:09,880 SCIENCE AND WHERE THAT HAPPENS 1245 00:56:09,880 --> 00:56:13,040 AND NOT EVERY SCIENTIFIC PROBLEM 1246 00:56:13,040 --> 00:56:15,760 BENEFITS FROM A COLLABORATION OF 1247 00:56:15,760 --> 00:56:17,920 MULTI SECTOR COLLABORATION BUT 1248 00:56:17,920 --> 00:56:21,320 SOME OF THE HARD PROBLEMS DO AND 1249 00:56:21,320 --> 00:56:25,160 I THINK PEOPLE WHO SOPHISTICATED 1250 00:56:25,160 --> 00:56:26,600 DONORS SO TO SPEAK, UNDERSTAND 1251 00:56:26,600 --> 00:56:28,760 THE PROCESS OF SCIENCE IS 1252 00:56:28,760 --> 00:56:30,600 ULTIMATELY AT ITS CORE A 1253 00:56:30,600 --> 00:56:31,440 COLLABORATIVE PROCESS. 1254 00:56:31,440 --> 00:56:32,640 NO ONE MAKES PROGRESS BY 1255 00:56:32,640 --> 00:56:35,440 THEMSELVES AND SO BY 1256 00:56:35,440 --> 00:56:37,440 FACILITATING AND BROKERING AN 1257 00:56:37,440 --> 00:56:39,160 ORGANIZATION THAT HAS A PRETTY 1258 00:56:39,160 --> 00:56:42,000 GOOD TRACK RECORD OF MOVING 1259 00:56:42,000 --> 00:56:43,760 THINGS FROM IDEAS THROUGH THE 1260 00:56:43,760 --> 00:56:46,400 WHOLE TRANSLATIONAL PROCESS TO 1261 00:56:46,400 --> 00:56:47,800 REGULATORY APPROVAL, IS THE WAY 1262 00:56:47,800 --> 00:56:50,520 THAT ULTIMATELY MAKE SURE THAT 1263 00:56:50,520 --> 00:56:51,600 YOUR INVESTMENTS IS GOING TO 1264 00:56:51,600 --> 00:56:53,640 HAVE A HIGH VALUE AT THE END OF 1265 00:56:53,640 --> 00:56:55,280 THE DAY AND I THINK THAT'S ONE 1266 00:56:55,280 --> 00:56:57,640 OF THE ASPECTS OF OUR ENGAGEMENT 1267 00:56:57,640 --> 00:57:04,000 THAT WE NEED TO MAKE MORE 1268 00:57:04,000 --> 00:57:06,000 VISIBLE, THIS IS A HIGH POS AND 1269 00:57:06,000 --> 00:57:08,520 WE HAVE A REALLY GOOD TRACK 1270 00:57:08,520 --> 00:57:10,560 RECORDS OF MOVING THINGS THROUGH 1271 00:57:10,560 --> 00:57:11,120 THE PIPELINE. 1272 00:57:11,120 --> 00:57:12,840 >> YEAH, ABSOLUTELY. 1273 00:57:12,840 --> 00:57:17,880 SO ANOTHER QUESTION HAS COME IN 1274 00:57:17,880 --> 00:57:21,240 HOW DO YOU SEE TECHNOLOGIES I 1275 00:57:21,240 --> 00:57:23,880 OBJECT INNOVATION AND IN 1276 00:57:23,880 --> 00:57:25,160 INITIATIVES AND FOCUS AND 1277 00:57:25,160 --> 00:57:27,800 DIGITAL BIOMARKERS. 1278 00:57:27,800 --> 00:57:30,080 >> WELL, ABSOLUTELY. 1279 00:57:30,080 --> 00:57:32,200 THIS IS A STRATEGIC QUESTION 1280 00:57:32,200 --> 00:57:42,760 THAT MY TEAM IS ENGAGING ON AND 1281 00:57:54,520 --> 00:57:57,440 SO THAT IS A FARE OF INNOVATION 1282 00:57:57,440 --> 00:57:59,320 THAT IS A NO-BRAINER RIGHT NOW 1283 00:57:59,320 --> 00:58:00,920 SO WE'LL BE THINKING ABOUT WHERE 1284 00:58:00,920 --> 00:58:05,800 THAT MIGHT BE USEFUL AND EVEN IN 1285 00:58:05,800 --> 00:58:07,960 MENTAL HEALTH DISORDERS AND 1286 00:58:07,960 --> 00:58:09,760 NEWER LOGIC DISORDERS THE 1287 00:58:09,760 --> 00:58:12,080 DIGITAL MONITORING IS PATIENT 1288 00:58:12,080 --> 00:58:13,880 FRIENDLY AND PROVIDES A UNIQUE 1289 00:58:13,880 --> 00:58:15,440 KIND OF INFORMATION THAT 1290 00:58:15,440 --> 00:58:17,840 ULTIMATELY SPEAKS TO PATIENT 1291 00:58:17,840 --> 00:58:19,840 REPORTED OUTCOMES AS MUCH AS THE 1292 00:58:19,840 --> 00:58:21,480 BIOLOGICAL INDICATORS OF SUCCESS 1293 00:58:21,480 --> 00:58:25,600 SO I THINK IT'S TIME HAS COME. 1294 00:58:25,600 --> 00:58:28,880 >> YES, ABSOLUTELY. 1295 00:58:28,880 --> 00:58:32,160 SO ANOTHER QUESTION FROM SARAH, 1296 00:58:32,160 --> 00:58:33,840 I'M GOING TO KIND OF PIVOT A 1297 00:58:33,840 --> 00:58:37,360 LITTLE BIT IN TERMS OF HOW THIS 1298 00:58:37,360 --> 00:58:40,200 IS FRAMED AND YOU KNOW, AS YOU 1299 00:58:40,200 --> 00:58:44,600 ARE AWARE ABOUT 10 INSTITUTE AND 1300 00:58:44,600 --> 00:58:49,040 HAVE AT NIH THAT A NEUROSCIENCE 1301 00:58:49,040 --> 00:58:51,920 FOCUS NINDS IS ONE LEADER AND 1302 00:58:51,920 --> 00:58:52,880 WEST NATIONAL INSTITUTE OF 1303 00:58:52,880 --> 00:58:54,240 MENTAL HEALTH OR THE NATIONAL 1304 00:58:54,240 --> 00:59:00,480 EYE INSTITUTE AND SO ON AND SO 1305 00:59:00,480 --> 00:59:02,600 CAN YOU HELP US FIGURE OUT HOW 1306 00:59:02,600 --> 00:59:04,120 IT WORKS WITH INDIVIDUAL 1307 00:59:04,120 --> 00:59:05,920 NEUROSCIENCE AND INITIATIVES 1308 00:59:05,920 --> 00:59:09,480 ACROSS NIH BUT AS WELL A 1309 00:59:09,480 --> 00:59:10,640 INITIATIVE LIKE FOR EXAMPLE A 1310 00:59:10,640 --> 00:59:13,000 CROSS INSTITUTE INITIATIVE IN 1311 00:59:13,000 --> 00:59:14,600 NEUROSCIENCE IS THE BRAIN 1312 00:59:14,600 --> 00:59:18,800 INITIATIVE FOR ADVANCING NEURO 1313 00:59:18,800 --> 00:59:19,560 TECHNOLOGIES. 1314 00:59:19,560 --> 00:59:22,600 >> YEAH, THIS IS PART OF I 1315 00:59:22,600 --> 00:59:24,440 THINK, WHERE THE CROSS 1316 00:59:24,440 --> 00:59:25,520 DISCIPLINARY APPROACH BECOMES 1317 00:59:25,520 --> 00:59:30,360 REALLY IMPORTANT AND OFTEN, THE 1318 00:59:30,360 --> 00:59:32,480 AREAS OF COLLABORATION ARE 1319 00:59:32,480 --> 00:59:35,520 DRIVEN BY THE NIH DIRECTOR OR A 1320 00:59:35,520 --> 00:59:37,680 SUBSET OF INSTITUTES THAT SEE 1321 00:59:37,680 --> 00:59:40,520 THE NEED BUT DO ALWAYS HAVE THE 1322 00:59:40,520 --> 00:59:41,440 MECHANISMS -- DON'T ALWAYS HAVE 1323 00:59:41,440 --> 00:59:47,040 THE MECHANISMS TO CREATE A 1324 00:59:47,040 --> 00:59:48,360 COLLABORATION IF YOU THINK ABOUT 1325 00:59:48,360 --> 00:59:49,200 PARTICIPATING IN EVERYBODY 1326 00:59:49,200 --> 00:59:50,920 THINKS WELL GEE, MAYBE IT WOULD 1327 00:59:50,920 --> 00:59:53,200 BE GREAT TO HAVE THESE INDUSTRY 1328 00:59:53,200 --> 00:59:55,280 PARTNERS COME INTO PLAY. 1329 00:59:55,280 --> 00:59:57,560 YOU CAN'T HAVE EACH INSTITUTE 1330 00:59:57,560 --> 01:00:00,040 REACH OUT TO EACH PARTNER TO THE 1331 01:00:00,040 --> 01:00:01,360 COORDINATION OF ALL THAT FIRST 1332 01:00:01,360 --> 01:00:03,160 AND FOR MOST HAPPENS WITHIN THE 1333 01:00:03,160 --> 01:00:05,120 NIH BEFORE WE SEE IT AND THEN 1334 01:00:05,120 --> 01:00:07,160 THE GOVERNANCE PROCESS REALLY 1335 01:00:07,160 --> 01:00:09,160 PUTS AT THE TABLE THE LEAD 1336 01:00:09,160 --> 01:00:12,720 INSTITUTE OR THE LEAD SCIENTISTS 1337 01:00:12,720 --> 01:00:16,480 TO BE THE KIND OF PRINCIPLE OF 1338 01:00:16,480 --> 01:00:18,240 THE PROCESS BUT WE WOULD MAKE 1339 01:00:18,240 --> 01:00:19,560 SURE THAT THE RELEVANT 1340 01:00:19,560 --> 01:00:21,520 INSTITUTES ARE INCLUDED ON THE 1341 01:00:21,520 --> 01:00:22,080 STEERING COMMITTEES AND 1342 01:00:22,080 --> 01:00:23,160 PARTICIPATING IN THE ACTUAL 1343 01:00:23,160 --> 01:00:24,800 DESIGN AND CONDUCT OF THE THE 1344 01:00:24,800 --> 01:00:25,200 SCIENCE. 1345 01:00:25,200 --> 01:00:26,800 THAT'S WHAT I THINK IS REALLY 1346 01:00:26,800 --> 01:00:30,520 THE AMAZING THING ABOUT THIS. 1347 01:00:30,520 --> 01:00:33,120 COLLABORATIONS HAVE A HIGH 1348 01:00:33,120 --> 01:00:34,360 TRANSACTION AT CLASS BUT THEY 1349 01:00:34,360 --> 01:00:36,640 PLAN HORIZONTAL LOW AND THEN 1350 01:00:36,640 --> 01:00:38,200 EXECUTE VERTICALLY AND I THINK 1351 01:00:38,200 --> 01:00:40,120 THAT IS THE SECRET TO THIS KIND 1352 01:00:40,120 --> 01:00:45,360 OF PROJECT MANAGEMENT. 1353 01:00:45,360 --> 01:00:45,680 ABSOLUTELY. 1354 01:00:45,680 --> 01:00:46,680 >> I'M GOING TO ASK YOU A 1355 01:00:46,680 --> 01:00:47,720 QUESTION THAT I'M INTERESTED IN 1356 01:00:47,720 --> 01:00:50,080 AND ALSO AS I DO, I'M GOING TO 1357 01:00:50,080 --> 01:00:52,880 PUT THE FNIH WEBSITE INTO THE 1358 01:00:52,880 --> 01:00:53,160 CHAT. 1359 01:00:53,160 --> 01:00:56,800 IT'S VERY SIMPLE. 1360 01:00:56,800 --> 01:00:59,120 ONE OF THE MY QUESTIONS WAS, I 1361 01:00:59,120 --> 01:01:02,600 REALLY APPRECIATED THAT FNIH IS 1362 01:01:02,600 --> 01:01:05,040 VERY EXPLICIT OF PUBLIC-PRIVATE 1363 01:01:05,040 --> 01:01:06,360 PARTNERSHIP CRITERIA SO I'M 1364 01:01:06,360 --> 01:01:08,400 CURIOUS FOR THE DIVERSE 1365 01:01:08,400 --> 01:01:11,880 ATTENDEES OF THE FORUM WHO MIGHT 1366 01:01:11,880 --> 01:01:13,000 BE ACTUAL LEADERSHIP IN 1367 01:01:13,000 --> 01:01:14,760 DIFFERENT SIZE NON-PROFIT 1368 01:01:14,760 --> 01:01:16,320 ORGANIZATIONS AND THEY MIGHT BE 1369 01:01:16,320 --> 01:01:17,320 MEMBERS OF THE ORGANIZATION AND 1370 01:01:17,320 --> 01:01:19,040 MIGHT BE THE PATIENTS AND THEIR 1371 01:01:19,040 --> 01:01:20,480 CAREGIVERS WHO ARE SUPPORTED BY 1372 01:01:20,480 --> 01:01:23,760 THE ORGANIZATION AND LOOKING TO 1373 01:01:23,760 --> 01:01:24,480 THEM. 1374 01:01:24,480 --> 01:01:25,880 WHAT ARE THE STEPS THAT THEY 1375 01:01:25,880 --> 01:01:28,520 COULD TAKE, IF THEY'RE TRYING TO 1376 01:01:28,520 --> 01:01:29,680 UNDERSTAND WHERE THEY FALL IN 1377 01:01:29,680 --> 01:01:35,040 KIND OF YOUR PIPE LYNN AT FNIH? 1378 01:01:35,040 --> 01:01:36,280 IS THERE A FLOW CHART ON THE 1379 01:01:36,280 --> 01:01:37,520 WELCOME BACK SIGHT OR A PERSON 1380 01:01:37,520 --> 01:01:39,160 THEY SHOULD E-MAIL? 1381 01:01:39,160 --> 01:01:40,840 YOU DON'T WANT ALL OF THESE 1382 01:01:40,840 --> 01:01:43,840 E-MAILS GOING TO BE DIRECTLY BUT 1383 01:01:43,840 --> 01:01:48,600 REVIEWING THE CRITERIA, IF THERE 1384 01:01:48,600 --> 01:01:49,440 ARE GROUPS VERSUS INDIVIDUALS 1385 01:01:49,440 --> 01:01:52,000 WHO WANT TO TRY TO ENGAGE IN 1386 01:01:52,000 --> 01:01:53,440 THESE PARTNERSHIPS, WHAT WOULD 1387 01:01:53,440 --> 01:01:56,560 YOU RECOMMEND THEY DO? 1388 01:01:56,560 --> 01:01:58,960 >> SO, RIGHT NOW, THE FIRST 1389 01:01:58,960 --> 01:02:00,360 ANSWER IS I DON'T KNOW. 1390 01:02:00,360 --> 01:02:03,200 SO THAT IS AN HONEST ANSWER AND 1391 01:02:03,200 --> 01:02:05,280 I'M STILL FIGURING THIS OUT BUT 1392 01:02:05,280 --> 01:02:07,200 I WILL SAY THAT ONE OF THE FIRST 1393 01:02:07,200 --> 01:02:09,720 THINGS I DID WAS TO CREATE A 1394 01:02:09,720 --> 01:02:11,760 CONTRACT FOR A PERSON THAT I 1395 01:02:11,760 --> 01:02:16,000 WORKED WITH AT MERC WHO LED OUR 1396 01:02:16,000 --> 01:02:17,880 PATIENT ENGAGEMENT ORGANIZATION 1397 01:02:17,880 --> 01:02:20,800 BUT JANICE RETIRED BUT SHE WILL 1398 01:02:20,800 --> 01:02:21,600 CONDUCT AN ASSESSMENT. 1399 01:02:21,600 --> 01:02:23,400 FIRST OF ALL, WHAT ARE WE DOING 1400 01:02:23,400 --> 01:02:25,080 RIGHT NOW WITH PATIENT 1401 01:02:25,080 --> 01:02:25,920 ORGANIZATION THIS IS WHERE ARE 1402 01:02:25,920 --> 01:02:27,520 THE PERSPECTIVES AND INSIGHTS 1403 01:02:27,520 --> 01:02:29,320 FROM PATIENTS COMING NO THE PLAY 1404 01:02:29,320 --> 01:02:33,160 AND WHERE COULD OR THEY SHOULD 1405 01:02:33,160 --> 01:02:35,840 AND WHAT IS THE BEST PRACTICE 1406 01:02:35,840 --> 01:02:37,960 AND WHAT ARE WE MISSING? 1407 01:02:37,960 --> 01:02:40,280 JANUARY WILL MISS OUT TO 1408 01:02:40,280 --> 01:02:41,480 ORGANIZATIONS TO GET A POINT OF 1409 01:02:41,480 --> 01:02:43,120 VIEW SO WE'LL HAVE CONVERSATIONS 1410 01:02:43,120 --> 01:02:47,000 AND INTERVIEWS WITH THOSE FOLKS 1411 01:02:47,000 --> 01:02:48,880 AND COMING OUT OF THAT WE'LL 1412 01:02:48,880 --> 01:02:59,440 PROVIDE CLARITY AROUND THIS AND 1413 01:03:03,960 --> 01:03:06,680 TRUST ME IT'S AN INVITATION AND 1414 01:03:06,680 --> 01:03:11,800 I WANT THIS TO HAPPEN? 1415 01:03:11,800 --> 01:03:11,960 AND. 1416 01:03:11,960 --> 01:03:14,040 >> FANTASTIC. 1417 01:03:14,040 --> 01:03:17,840 >> I'M GOING TO ASK YOU ANOTHER 1418 01:03:17,840 --> 01:03:19,000 QUESTION BECAUSE IT'S AN AREA 1419 01:03:19,000 --> 01:03:21,120 THAT IS IMPORTANT NON PROVE I 1420 01:03:21,120 --> 01:03:24,680 CAN PARTNERS AND AND YOU HAD 1421 01:03:24,680 --> 01:03:27,640 MENTIONED ON THE STATUS OF FNIH 1422 01:03:27,640 --> 01:03:29,040 AND WORKING TOWARDS ONE OF THE 1423 01:03:29,040 --> 01:03:31,680 ONES YOU MENTIONED IS EQUITY 1424 01:03:31,680 --> 01:03:33,800 DIVERSITY AND INCLUSION AND I 1425 01:03:33,800 --> 01:03:36,440 KNOW IN RESEARCH AND WE'RE ALL 1426 01:03:36,440 --> 01:03:37,840 WORKING TO MAKE SURE THAT IT 1427 01:03:37,840 --> 01:03:40,400 HAPPENS AND THERE'S A SESSION AT 1428 01:03:40,400 --> 01:03:43,360 THE FORUM AND HOW TO BE 1429 01:03:43,360 --> 01:03:44,600 INCLUSIVE AND SO I'M CURIOUS 1430 01:03:44,600 --> 01:03:49,400 LIKE YOU DO GIVE US A FEW MORE 1431 01:03:49,400 --> 01:03:50,960 ON HOW GOALS AND AREAS THAT YOU 1432 01:03:50,960 --> 01:03:55,360 ARE PAYING FOR IN SIGHT ON FROM 1433 01:03:55,360 --> 01:03:56,480 OUR COMMUNITY MEMBERS. 1434 01:03:56,480 --> 01:04:00,040 >> I WANT TO START WITH THE AGO 1435 01:04:00,040 --> 01:04:03,280 NOMMENT THAT A LOT HAS BEEN DONE 1436 01:04:03,280 --> 01:04:05,880 AND SO I DON'T MEAN TO IMPLY 1437 01:04:05,880 --> 01:04:07,520 THAT SOMETHING WAS WRONG AND 1438 01:04:07,520 --> 01:04:11,040 RAISING INTO FIX IT AND FROM A 1439 01:04:11,040 --> 01:04:12,360 GRASSROOTS LEVEL BECAUSE OF THE 1440 01:04:12,360 --> 01:04:15,680 IMPOSED ISOLATION OF THE 1441 01:04:15,680 --> 01:04:17,800 PANDEMIC AND HALF OF OUR 1442 01:04:17,800 --> 01:04:18,880 ORGANIZATION GOT TOGETHER SO I 1443 01:04:18,880 --> 01:04:21,360 THINK THAT IT CAN GO PIR IN THE 1444 01:04:21,360 --> 01:04:22,560 SPACE AND SOME OF THE AREAS 1445 01:04:22,560 --> 01:04:27,440 WHERE WE NEED TO IMPROVE JUST 1446 01:04:27,440 --> 01:04:31,200 DON'T THE DIVERSITY OF WORKFORCE 1447 01:04:31,200 --> 01:04:32,880 AND THE INCLUSION AND COMFORT 1448 01:04:32,880 --> 01:04:35,360 THAT WE CREATE FOR THE BROAD 1449 01:04:35,360 --> 01:04:39,000 SPECTRUM OF EMPLOYEES THAT WE 1450 01:04:39,000 --> 01:04:45,240 HAVE SO ONE OF THE WORKGROUPS IS 1451 01:04:45,240 --> 01:04:46,880 SPECIFICALLY LOOKING AT OUR WORK 1452 01:04:46,880 --> 01:04:49,040 AND NOT JUST WHO WE ARE AND HOW 1453 01:04:49,040 --> 01:04:50,800 WE INTERACT WITH EACH OTHER BUT 1454 01:04:50,800 --> 01:04:55,240 DOES OUR COMMITMENT TO SCIENCE 1455 01:04:55,240 --> 01:04:59,840 AND THE MISSION OF THE NIH BUT 1456 01:04:59,840 --> 01:05:05,840 ULTIMATELY ARE WE INCLUSIVE IN 1457 01:05:05,840 --> 01:05:06,400 THAT SENSE? 1458 01:05:06,400 --> 01:05:07,520 THAT'S A HARDER QUESTION. 1459 01:05:07,520 --> 01:05:08,400 I DON'T KNOW THE ANSWER BECAUSE 1460 01:05:08,400 --> 01:05:09,960 WE HAVE COMPLEX SET OF PROGRAMS 1461 01:05:09,960 --> 01:05:17,160 AND THAT IS WHAT I TEND TO FIND 1462 01:05:17,160 --> 01:05:22,560 OUT. 1463 01:05:22,560 --> 01:05:24,600 AND WE KNOW THE HEALTH 1464 01:05:24,600 --> 01:05:26,120 DISPARITIES ARE SO PARAMOUNT AND 1465 01:05:26,120 --> 01:05:28,280 WHAT DO WE GET TOGETHER WITH OUR 1466 01:05:28,280 --> 01:05:30,400 PARTNERS AND HOW DO WE SELECT 1467 01:05:30,400 --> 01:05:31,840 PARTNERS THAT ARE GOOD AT THIS 1468 01:05:31,840 --> 01:05:36,160 SO THERE'S AN EXPECTATION THAT 1469 01:05:36,160 --> 01:05:37,680 IT'S NOT JUST THAT THEIR THIS 1470 01:05:37,680 --> 01:05:38,960 BUT EVERYBODY THAT COMES INTO 1471 01:05:38,960 --> 01:05:41,800 KIND OF THIS PART AND IT'S 1472 01:05:41,800 --> 01:05:43,240 COMMITTED AND THAT IS WHAT IS SO 1473 01:05:43,240 --> 01:05:48,960 GREAT ABOUT THE RECENT MEETING 1474 01:05:48,960 --> 01:05:50,080 AND SO WE ARE ADDRESSING THAT 1475 01:05:50,080 --> 01:05:52,160 THEY TOOK THE ENTIRE MEETING TO 1476 01:05:52,160 --> 01:05:54,840 FOCUS ON THIS ISSUE. 1477 01:05:54,840 --> 01:05:58,160 >> IT'S FANTASTIC AND I LOVE 1478 01:05:58,160 --> 01:06:00,560 THAT POINT ABOUT IT IS 1479 01:06:00,560 --> 01:06:02,920 COLLABORATIVE AND IT'S NOT JUST 1480 01:06:02,920 --> 01:06:08,400 ALL FNIH OR ALL NIH IT'S THE 1481 01:06:08,400 --> 01:06:13,280 WHOLE COMMUNITY AND TAKING 1482 01:06:13,280 --> 01:06:15,440 EXPERTISE SO WE CAN MOVE FORWARD 1483 01:06:15,440 --> 01:06:18,240 IN A POSITIVE WAY. 1484 01:06:18,240 --> 01:06:23,920 WE HAVE IS LOOKING ANOTHER THE 1485 01:06:23,920 --> 01:06:25,760 FUNDRAISING PARTICULARS SO IN 1486 01:06:25,760 --> 01:06:32,680 TERMS OF YOU HAD MENTIONED FNIH 1487 01:06:32,680 --> 01:06:39,160 AND JUST A LITTLE BIT MORE TWO 1488 01:06:39,160 --> 01:06:41,040 THINGS MEAN AND WHAT DOES IT NOT 1489 01:06:41,040 --> 01:06:44,560 VERSED IN KIND OF THE WORLD OF 1490 01:06:44,560 --> 01:06:48,080 DONATIONS AND HOW GET ARTICULATE 1491 01:06:48,080 --> 01:06:54,520 IN THE SYSTEM. 1492 01:06:54,520 --> 01:06:59,080 >> EARLY DAYS FOR ME IN THIS 1493 01:06:59,080 --> 01:07:03,120 REGARD AND ONE IS THE 1494 01:07:03,120 --> 01:07:04,200 TRADITIONAL FILL AN THROW I CAN 1495 01:07:04,200 --> 01:07:05,800 APPROACH GOING WAY BACK 25 YEARS 1496 01:07:05,800 --> 01:07:09,560 AGO AND THE PEOPLE WHO WERE PART 1497 01:07:09,560 --> 01:07:11,000 OF THE ORIGINAL BOARD OF THE 1498 01:07:11,000 --> 01:07:12,840 FOUNDATION HAD STRONG 1499 01:07:12,840 --> 01:07:17,600 PHILANTHROPIC TENDENCIES AND WE 1500 01:07:17,600 --> 01:07:21,720 HAVE SUPPORT THAT WAS 1501 01:07:21,720 --> 01:07:29,520 LONGSTANDING AND WE ALSO HAVE 1502 01:07:29,520 --> 01:07:30,320 SPECIALEN COUPLES AND AND THEY 1503 01:07:30,320 --> 01:07:32,600 SUPPORT IN WAYS AND THE I 1504 01:07:32,600 --> 01:07:34,800 SKIPPED OVER THE SLIDE AND I 1505 01:07:34,800 --> 01:07:36,160 DESCRIBED OUR ANNUAL AWARDS 1506 01:07:36,160 --> 01:07:38,400 DINNER AND WE NOMINATE 1507 01:07:38,400 --> 01:07:40,200 PARTICULARLY TALENTED AND 1508 01:07:40,200 --> 01:07:43,040 PRODUCTIVE SCIENCES AND AN AWARD 1509 01:07:43,040 --> 01:07:45,480 AND THAT IS SOMETHING THAT HAS 1510 01:07:45,480 --> 01:07:48,200 BEEN SUPPORTED BY FOR A NUMBER 1511 01:07:48,200 --> 01:07:50,880 OF YEARS OR GRATEFUL AND IT'S 10 1512 01:07:50,880 --> 01:07:53,320 YEARS AND SO THAT IS THE KIND OF 1513 01:07:53,320 --> 01:07:57,440 THING THAT WE TRY TO BUILD ON 1514 01:07:57,440 --> 01:07:59,320 GOING FORWARD AND WE HAVE A 1515 01:07:59,320 --> 01:08:00,960 DIFFERENT FUNDRAISING AND THAT'S 1516 01:08:00,960 --> 01:08:02,600 PROJECT FUNDRAISING AND THE 1517 01:08:02,600 --> 01:08:06,440 FOLKS THAT ARE INTERESTED IN ARE 1518 01:08:06,440 --> 01:08:08,120 PROJECT AND THOSE WHO ARE 1519 01:08:08,120 --> 01:08:11,960 STAKEHOLDERS AND INCLUDES 1520 01:08:11,960 --> 01:08:14,560 INDUSTRIES AND BIOTECH OR 1521 01:08:14,560 --> 01:08:16,440 PARTNERS FOR THE MOR DIGITAL 1522 01:08:16,440 --> 01:08:18,240 APPROACH TO WHAT WE'RE DOING AND 1523 01:08:18,240 --> 01:08:20,560 IN ADDITION TO THIS WE DO 1524 01:08:20,560 --> 01:08:23,000 RECEIVE SIGNIFICANT RESOURCE 0 1525 01:08:23,000 --> 01:08:25,320 FOUNDATIONS AND I MENTIONED 1526 01:08:25,320 --> 01:08:26,680 GATES BUT THERE ARE OTHER 1527 01:08:26,680 --> 01:08:27,680 FOUNDATIONS WHO HAVE A SPECIAL 1528 01:08:27,680 --> 01:08:29,400 INTEREST IN A PROJECT AREA OR 1529 01:08:29,400 --> 01:08:31,760 JUST THE ADVANCEMENTS AND THE 1530 01:08:31,760 --> 01:08:42,160 HARTEST THINGS FOR US TO 1531 01:08:44,280 --> 01:08:45,520 ACCELERATE THE START UP OF SOME 1532 01:08:45,520 --> 01:08:47,440 OF OUR FUNDS SO NOT HAVING TO 1533 01:08:47,440 --> 01:08:57,960 WAIT UNTIL UNTIL THE MONEY WAS 1534 01:09:01,880 --> 01:09:10,360 THE SPTO --WE'VE LEARNED THAT AO 1535 01:09:10,360 --> 01:09:12,840 NOW WE HAVE TO FIGURE OUT HOW 1536 01:09:12,840 --> 01:09:15,440 CAN WE ARE PART OF THAT ENGINE 1537 01:09:15,440 --> 01:09:16,640 AND IT DRIVES THE PROGRESS 1538 01:09:16,640 --> 01:09:19,000 FORWARD AND MORE EXPEDITION US 1539 01:09:19,000 --> 01:09:19,240 MANNER. 1540 01:09:19,240 --> 01:09:20,440 >> FANTASTIC. 1541 01:09:20,440 --> 01:09:22,960 SO WE DID JUST RECEIVE ONE LAST 1542 01:09:22,960 --> 01:09:24,280 QUESTION THAT WE DO HAVE A 1543 01:09:24,280 --> 01:09:25,840 COUPLE MINUTES FOR BUT I WANT TO 1544 01:09:25,840 --> 01:09:27,440 JUST ACKNOWLEDGE AGAIN THAT YOU 1545 01:09:27,440 --> 01:09:30,480 HAVE RECENTLY TAKE NOT ON THIS 1546 01:09:30,480 --> 01:09:31,800 FANTASTIC ROLE SO IT'S 1547 01:09:31,800 --> 01:09:33,120 CONCEIVABLE YOU KNOW THE ANSWER 1548 01:09:33,120 --> 01:09:35,600 TO THIS BUT THAT'S OK WE CAN PUT 1549 01:09:35,600 --> 01:09:37,120 A PIN IN IT IF NOT. 1550 01:09:37,120 --> 01:09:39,280 ONE OF OUR GROUP WAS SO 1551 01:09:39,280 --> 01:09:40,520 DELIGHTED BY YOUR TALK BECAUSE 1552 01:09:40,520 --> 01:09:42,080 THEY DIDN'T EVEN KNOW NIH 1553 01:09:42,080 --> 01:09:44,040 EXISTED SO THIS WAS FANTASTIC 1554 01:09:44,040 --> 01:09:46,040 AND WHAT WE WERE TRYING TO DO. 1555 01:09:46,040 --> 01:09:48,760 THE QUESTION IS, KIND OF, ABOUT 1556 01:09:48,760 --> 01:09:50,640 MORE OF A TARGETED RESEARCH 1557 01:09:50,640 --> 01:09:52,400 PROJECT IN THE NEUROSCIENCES AND 1558 01:09:52,400 --> 01:09:55,000 SO YOU MENTIONED ONE OR TWO AND 1559 01:09:55,000 --> 01:10:00,440 IS THERE ANYTHING THAT FNIH HAS 1560 01:10:00,440 --> 01:10:03,080 ITS FINGERS IN WITH WITH REGARD 1561 01:10:03,080 --> 01:10:07,440 TO BRYN INJURY AND THE AND OF 1562 01:10:07,440 --> 01:10:11,320 THAT AND I KNOW THAT THE HISTORY 1563 01:10:11,320 --> 01:10:21,800 AND THE PROCESS AGENCIES AND I 1564 01:10:30,640 --> 01:10:34,240 HAVE TO CHECK ON THAT WOULD BE 1565 01:10:34,240 --> 01:10:36,720 SURE AND I DO JUST REALLY WANT 1566 01:10:36,720 --> 01:10:39,080 TO SAY IN CLOSING THAT I 1567 01:10:39,080 --> 01:10:40,600 APOLOGIES FOR NOT BEING FULLY 1568 01:10:40,600 --> 01:10:42,280 INFORMED ABOUT EVERYTHING, IT'S 1569 01:10:42,280 --> 01:10:45,080 JUST BEEN DRINKING FROM A FIRE 1570 01:10:45,080 --> 01:10:46,640 HORSE AND I WOULD ALSO JUST SAY 1571 01:10:46,640 --> 01:10:49,880 WHEN YOU THINK ABOUT FNIH AND 1572 01:10:49,880 --> 01:10:53,040 THINK ABOUT IT IN THE SENSE OF 1573 01:10:53,040 --> 01:10:55,840 THE MOUSE THAT ROARED AND WE 1574 01:10:55,840 --> 01:10:58,480 WANT TO STAY IN THE GOLDILOCKS 1575 01:10:58,480 --> 01:11:03,920 STAGE OF BEING VISIBLE ENOUGH TO 1576 01:11:03,920 --> 01:11:05,960 DO OUR WORK WELL AND BE HELPFUL 1577 01:11:05,960 --> 01:11:07,640 TO THE NIH AND OUR PATIENTS BUT 1578 01:11:07,640 --> 01:11:12,320 AT THE SAME TIME, WE'RE NOT GET 1579 01:11:12,320 --> 01:11:15,320 BIG AND GO HIGHWAYLY VISIBLE AND 1580 01:11:15,320 --> 01:11:18,280 FRONT-RUNNER HERE AND WE'RE VERY 1581 01:11:18,280 --> 01:11:22,560 HAPPY TO BE CATALYST OF GREAT 1582 01:11:22,560 --> 01:11:24,720 SCIENCE AND ULTIMATE LOW TO DO 1583 01:11:24,720 --> 01:11:26,360 WHAT I HOPE WILL BE BETTER 1584 01:11:26,360 --> 01:11:31,000 HEALTH FOR THE PEOPLE THAT 1585 01:11:31,000 --> 01:11:39,840 REALLY FEET N AND HOPEFULLY I'LE 1586 01:11:39,840 --> 01:11:40,160 MORE INFORMED. 1587 01:11:40,160 --> 01:11:42,000 >> YOU DID AN AMAZING JOB AND 1588 01:11:42,000 --> 01:11:43,120 THANK YOU FOR GIVING US YOUR 1589 01:11:43,120 --> 01:11:43,320 TIME. 1590 01:11:43,320 --> 01:11:45,120 I KNOW IT'S BEEN DRINKING FROM 1591 01:11:45,120 --> 01:11:48,960 THE FIRE HORSE AND I APPRECIATE 1592 01:11:48,960 --> 01:11:49,920 ALL THE INFORMATION YOU SHARED 1593 01:11:49,920 --> 01:11:51,800 AND WE ARE GOING TO ARCHIVE THIS 1594 01:11:51,800 --> 01:11:54,240 SO THAT THOSE WHO WANT TO 1595 01:11:54,240 --> 01:11:58,360 REFERENCE IT AGAIN IN THE NEWT 1596 01:11:58,360 --> 01:12:03,640 ARE ABLE TO THANK YOU SO MUCH 1597 01:12:03,640 --> 01:12:05,320 AND HAVE A WONDERFUL DAY AND I 1598 01:12:05,320 --> 01:12:06,600 HOPE YOU ARE ABLE TO JIN OUR 1599 01:12:06,600 --> 01:12:08,120 SESSIONS IN THE NEXT TWO DAYS. 1600 01:12:08,120 --> 01:12:09,560 >> ENJOY THE REST OF THE 1601 01:12:09,560 --> 01:12:10,840 MEETING, EVERYONE. 1602 01:12:10,840 --> 01:12:11,080 THANK YOU. 1603 01:12:11,080 --> 01:12:13,240 >> THANK YOU. 1604 01:12:13,240 --> 01:12:16,560 >> SO WITH THAT, I'M GOING TO 1605 01:12:16,560 --> 01:12:19,360 SEG WAY US INTO OUR NEXT SESSION 1606 01:12:19,360 --> 01:12:21,480 AND THIS IS A SESSION THAT IS 1607 01:12:21,480 --> 01:12:24,920 GOING TO BE LED BY Dr. GERALD 1608 01:12:24,920 --> 01:12:29,960 DEAN ACUNA SUNSHINE AND PATIENT 1609 01:12:29,960 --> 01:12:30,560 ADD VOW SEE IN COMMERCIALIZATION 1610 01:12:30,560 --> 01:12:32,280 HOW TO WORK WITH INDUSTRY SO I 1611 01:12:32,280 --> 01:12:35,640 JUST WANT TO GIVE A FEW REMARKS 1612 01:12:35,640 --> 01:12:40,400 ABOUT GERALDINE SHE'S THE 1613 01:12:40,400 --> 01:12:41,560 PRESIDENT OF THE SUNSHINE CARE 1614 01:12:41,560 --> 01:12:42,600 FOUNDATION FOR NEUROLOGICAL CARE 1615 01:12:42,600 --> 01:12:44,880 AND RESEARCH AND A CO-FOUNDER OF 1616 01:12:44,880 --> 01:12:48,680 THE CENTER FOR DIS TONE YAR 1617 01:12:48,680 --> 01:12:49,880 PARKINSON'S AT THE MASSACHUSETTS 1618 01:12:49,880 --> 01:12:50,600 GENERAL HOSPITAL. 1619 01:12:50,600 --> 01:12:51,880 THESE ARE TWO INTERNATIONAL 1620 01:12:51,880 --> 01:12:55,240 NON-PROFIT ORGANIZATIONS, TWO, 1621 01:12:55,240 --> 01:12:56,400 DEDICATING TO FINDING 1622 01:12:56,400 --> 01:12:57,480 NEUROSCIENCE RESEARCH AND 1623 01:12:57,480 --> 01:12:59,320 FINDING WAYS OF DELIVERING FRO 1624 01:12:59,320 --> 01:13:03,240 CLINICAL CARE AND HUMANITARIAN 1625 01:13:03,240 --> 01:13:05,560 AID TO INDIGENOUS ENTER PATIENTS 1626 01:13:05,560 --> 01:13:07,040 IN RURAL AREAS OF AISH AMOUNT 1627 01:13:07,040 --> 01:13:12,400 SHA.SHE WAS THE FIRST BRAIN BANN 1628 01:13:12,400 --> 01:13:13,840 THE PHILIPPINES NOW PRIOR, SHE 1629 01:13:13,840 --> 01:13:15,240 ENTERED NO THE NON-PROFIT AND 1630 01:13:15,240 --> 01:13:18,040 SOCIAL IMPACT SECTORS, SHE 1631 01:13:18,040 --> 01:13:19,120 PRACTICED CORPORATE LAW FULL 1632 01:13:19,120 --> 01:13:21,120 TIME AS SENIOR COUNCIL IN 1633 01:13:21,120 --> 01:13:23,080 ALTERNATIVE INVESTMENTS AT BRACE 1634 01:13:23,080 --> 01:13:24,960 BRIDGE CAPITAL IN BOSTON AND 1635 01:13:24,960 --> 01:13:26,920 SERVED ON THE HARVARD UNIVERSITY 1636 01:13:26,920 --> 01:13:29,080 OF OVERSEERS AND THE PRESIDENT 1637 01:13:29,080 --> 01:13:31,120 COUNCIL OF MGH AND SHE SITS ON 1638 01:13:31,120 --> 01:13:34,960 THE VISITING COMMITTEE FOR THE 1639 01:13:34,960 --> 01:13:36,000 HARVARD SCHOOL OF PUBLIC-HEALTH 1640 01:13:36,000 --> 01:13:39,360 AND THE HARD SAD INITIATIVE AND 1641 01:13:39,360 --> 01:13:41,640 SHE LIVES IN BOSTON AND AS WELL 1642 01:13:41,640 --> 01:13:43,640 AS MANILA IN THE PHILIPPINES. 1643 01:13:43,640 --> 01:13:45,560 I'LL TAKE IT AWAY AND I DO WANT 1644 01:13:45,560 --> 01:13:47,800 TO NOTE, I'M SO SORRY OTHER, ONE 1645 01:13:47,800 --> 01:13:50,480 LAST THING, THAT I WOULD LIKE TO 1646 01:13:50,480 --> 01:13:51,920 ENCOURAGE OUR REGISTRANTS TO DO. 1647 01:13:51,920 --> 01:13:53,520 WE'RE GOING TO PASTE IN THE CHAT 1648 01:13:53,520 --> 01:13:54,840 THE OPPORTUNITY TO CONTINUE TO 1649 01:13:54,840 --> 01:13:56,360 SCHEDULE ONE-ON-ONE MEETINGS 1650 01:13:56,360 --> 01:13:58,680 WITH NINDS PROGRAM STAFF OVER 1651 01:13:58,680 --> 01:14:00,160 THE NEXT TWO DAYS AND ON 1652 01:14:00,160 --> 01:14:02,080 WEDNESDAY AND I ALSO WANT TO 1653 01:14:02,080 --> 01:14:05,640 ENCOURAGE ALL OF OUR NON NIH 1654 01:14:05,640 --> 01:14:06,320 PARTICIPANTS TO CONSIDER FILLING 1655 01:14:06,320 --> 01:14:08,320 OUT A SURVEY THAT WAS CREATED BY 1656 01:14:08,320 --> 01:14:10,680 THE NON-PROFIT MEMBERS OF OUR 1657 01:14:10,680 --> 01:14:12,600 EXECUTIVE BOARD FOR A BREAKOUT 1658 01:14:12,600 --> 01:14:13,600 SESSION THAT IS AT THE END OF 1659 01:14:13,600 --> 01:14:15,000 DAY TWO. 1660 01:14:15,000 --> 01:14:15,600 APOLOGIES. 1661 01:14:15,600 --> 01:14:16,600 THE FLOOR IS YOURS -- 1662 01:14:16,600 --> 01:14:17,800 >> AWESOME. 1663 01:14:17,800 --> 01:14:19,280 THANK YOU SO MUCH, SAM. 1664 01:14:19,280 --> 01:14:21,000 GOOD MORNING, EVERYONE, WELCOME 1665 01:14:21,000 --> 01:14:23,120 TO OUR FIRST PANEL DISCUSSION OF 1666 01:14:23,120 --> 01:14:25,160 THE MORNING AND THANK YOU TO THE 1667 01:14:25,160 --> 01:14:28,920 ENTIRE NINDS TEAM FOR THIS 1668 01:14:28,920 --> 01:14:30,000 AMAZING OPPORTUNITY FOR US TO 1669 01:14:30,000 --> 01:14:34,480 GATHER IN THIS FORUM, AS WAS 1670 01:14:34,480 --> 01:14:38,920 MENTIONED MODERATOR FOR THIS AND 1671 01:14:38,920 --> 01:14:40,160 AND COMMERCIALIZATION AND HAVE 1672 01:14:40,160 --> 01:14:42,680 TO WORK WITH INDUSTRY AND AS 1673 01:14:42,680 --> 01:14:45,440 MENTIONED I CO FOUNDED THE 1674 01:14:45,440 --> 01:14:52,360 CENTER FOR DIS TONIA AND IT'S A 1675 01:14:52,360 --> 01:14:54,760 RARE ADULT ONSET 1676 01:14:54,760 --> 01:14:55,480 NEURODEGENERATIVE DISEASE FOUND 1677 01:14:55,480 --> 01:14:57,680 IN PATIENTS WITH ANCESTRY FROM 1678 01:14:57,680 --> 01:14:58,840 THE PHILIPPINES. 1679 01:14:58,840 --> 01:15:02,400 SO, WE HAVE AN AMAZING GROUP OF 1680 01:15:02,400 --> 01:15:03,240 PANELISTS TODAY. 1681 01:15:03,240 --> 01:15:05,600 BUT BEFORE WE BEGIN, THEY DID 1682 01:15:05,600 --> 01:15:07,840 WANT ME TO CLARIFY BECAUSE OF 1683 01:15:07,840 --> 01:15:09,720 THE SESSION TITLE, THAT OUR 1684 01:15:09,720 --> 01:15:11,360 DISCUSSION WILL NOT BE FOCUSED 1685 01:15:11,360 --> 01:15:13,960 ON THE COMMERCIALIZATION OF 1686 01:15:13,960 --> 01:15:15,360 THERAPEUTICS, PER SE, BUT RATHER 1687 01:15:15,360 --> 01:15:18,480 ON HOW PATIENT ADVOCACY GROUPS 1688 01:15:18,480 --> 01:15:20,520 AND COMMERCIAL ENTITIES CAN WORK 1689 01:15:20,520 --> 01:15:21,960 TOGETHER TO FIND THERAPEUTICS 1690 01:15:21,960 --> 01:15:24,000 SOLUTIONS FOR THEIR RELEVANT 1691 01:15:24,000 --> 01:15:24,440 DISEASES. 1692 01:15:24,440 --> 01:15:27,000 AFTER THE PANELIST DISCUSSION, 1693 01:15:27,000 --> 01:15:28,480 WE WILL HAVE 10 TO 15 MINUTES IN 1694 01:15:28,480 --> 01:15:30,280 THE END FOR YOUR QUESTIONS AND 1695 01:15:30,280 --> 01:15:32,560 IF YOU WITH PUT THEM IN THE 1696 01:15:32,560 --> 01:15:33,240 CHAT, YOU WILL CALL ON YOU AT 1697 01:15:33,240 --> 01:15:37,360 THE END OF THE MEETING. 1698 01:15:37,360 --> 01:15:47,440 SO, JOINING US SO JOINING 1699 01:15:47,440 --> 01:15:50,360 ME IS CATHERINE BEAVERSON, AND 1700 01:15:50,360 --> 01:15:52,400 CONNECTS PATIENTS AND INDUSTRY 1701 01:15:52,400 --> 01:15:55,400 PARTNERS AND FOCUSED ON 1702 01:15:55,400 --> 01:15:56,800 ULTRARARE NEURO DEVELOPMENTAL 1703 01:15:56,800 --> 01:15:59,000 DISORDERS IN THEIR JOURNEY TO 1704 01:15:59,000 --> 01:16:02,160 DRUG DEVELOPMENT AND LAURA MITIC 1705 01:16:02,160 --> 01:16:03,200 CHIEF SCIENTIFIC OFFICER AT 1706 01:16:03,200 --> 01:16:06,960 BLUEFIELD PROJECT TO CURE FTD. 1707 01:16:06,960 --> 01:16:09,440 AND I BELIEVE WE ARE ALL THERE, 1708 01:16:09,440 --> 01:16:10,520 WE HAVE NO SLIDES SO HERE WE 1709 01:16:10,520 --> 01:16:10,880 ARE. 1710 01:16:10,880 --> 01:16:13,760 ALL OF US ON THE SCREEN. 1711 01:16:13,760 --> 01:16:17,360 SO, WELCOME, THANK YOU AND LET'S 1712 01:16:17,360 --> 01:16:20,760 START WITH CATHERINE, WELCOME, 1713 01:16:20,760 --> 01:16:22,520 GOOD MORNING. 1714 01:16:22,520 --> 01:16:23,160 >> GOOD MORNING. 1715 01:16:23,160 --> 01:16:26,680 >> YOU KNOW, AS WE DISCUSSED 1716 01:16:26,680 --> 01:16:28,440 DURING ONE OF OUR THREE 1717 01:16:28,440 --> 01:16:31,000 CONFERENCE CALLS, I COME ACROSS 1718 01:16:31,000 --> 01:16:35,000 A 2015 STUDY CONDUCTED BY SOME 1719 01:16:35,000 --> 01:16:36,440 RESEARCHERS AT DUKE ON THE 1720 01:16:36,440 --> 01:16:38,640 HURDLES TO COLLABORATION AMONG 1721 01:16:38,640 --> 01:16:41,080 PATIENT GROUPS, INDUSTRY 1722 01:16:41,080 --> 01:16:42,960 PARTNERS AND AK DEEM I CAN AND 1723 01:16:42,960 --> 01:16:44,640 WHILE INDUSTRY IDENTIFIED 1724 01:16:44,640 --> 01:16:46,480 INTERNAL BUREAUCRACY AS ITS 1725 01:16:46,480 --> 01:16:48,280 GREATEST HURDLE TO 1726 01:16:48,280 --> 01:16:49,560 COLLABORATION, PATIENT GROUPS 1727 01:16:49,560 --> 01:16:51,440 FOCUSED ON THE LACK OF 1728 01:16:51,440 --> 01:16:53,200 TRANSPARENCY AND UNDERSTANDING 1729 01:16:53,200 --> 01:16:55,280 OF HOW TO ENGAGE WITH INDUSTRY 1730 01:16:55,280 --> 01:16:57,360 AS THEIR GREATEST HURDLE. 1731 01:16:57,360 --> 01:16:58,880 AND IN THAT DISCUSSION, YOU 1732 01:16:58,880 --> 01:17:01,680 SHARED WITH ME A LINK TO 1733 01:17:01,680 --> 01:17:03,960 FRAMEWORK THAT I FOUND REALLY 1734 01:17:03,960 --> 01:17:05,600 HELPFUL DEVELOPED BY THE 1735 01:17:05,600 --> 01:17:08,600 CLINICAL TRIALS TRANSFORMATION 1736 01:17:08,600 --> 01:17:09,000 INITIATIVE. 1737 01:17:09,000 --> 01:17:10,520 IT'S A GROUP OF ACADEMICS, 1738 01:17:10,520 --> 01:17:13,560 PEOPLE AT THE FDA, PATIENT 1739 01:17:13,560 --> 01:17:16,280 ADVOCATES AND INDUSTRY INCLUDING 1740 01:17:16,280 --> 01:17:17,080 PEOPLE AT PFIZER, THAT DEVELOPED 1741 01:17:17,080 --> 01:17:19,200 THIS FRAMEWORK WHICH I FOUND 1742 01:17:19,200 --> 01:17:20,720 REALLY HELPFUL. 1743 01:17:20,720 --> 01:17:26,880 AND I BELIEVE THAT WE HAVE THIS 1744 01:17:26,880 --> 01:17:28,160 LINK IN THE CHAT AND I WONDERED 1745 01:17:28,160 --> 01:17:29,800 IF YOU COULD LEAD US THROUGH AND 1746 01:17:29,800 --> 01:17:32,040 GIVE A BRIEF OVERVIEW OF THE 1747 01:17:32,040 --> 01:17:33,200 CTTI FRAMEWORK BECAUSE I FOUND 1748 01:17:33,200 --> 01:17:43,280 IT VERY HELPFUL. 1749 01:17:43,280 --> 01:17:44,440 >> THANK YOU IT'S A GREAT 1750 01:17:44,440 --> 01:17:48,080 QUESTION AND I'M HAPPY IT TALK 1751 01:17:48,080 --> 01:17:49,400 ABOUT THIS FRAMEWORK AND THE 1752 01:17:49,400 --> 01:17:51,840 MODEL THAT CTTI HAS PUT TOGETHER 1753 01:17:51,840 --> 01:17:55,880 AND LET'S QUALIFY THAT WITH 1754 01:17:55,880 --> 01:18:03,040 THERE ARE A SHARED PURPOSE IN 1755 01:18:03,040 --> 01:18:05,720 HOW DO WE ENHANCE THE QUALITIES 1756 01:18:05,720 --> 01:18:08,560 AND THE EFFICIENCY OF THE 1757 01:18:08,560 --> 01:18:10,800 CLINICAL TRIAL PROCESS AND 1758 01:18:10,800 --> 01:18:11,120 EXPERIENCE. 1759 01:18:11,120 --> 01:18:12,960 THE STUDY THAT YOU REFERENCED 1760 01:18:12,960 --> 01:18:14,600 REALLY SAID OK, WELL, WHO ARE 1761 01:18:14,600 --> 01:18:17,840 THE STAKEHOLDERS INVOLVED IN 1762 01:18:17,840 --> 01:18:21,600 THIS PROCESS AND WHO DO SHARE IN 1763 01:18:21,600 --> 01:18:25,440 THIS PURPOSE AND THIS MISSION AS 1764 01:18:25,440 --> 01:18:29,040 YOU MENTIONED, ACADEMICS, 1765 01:18:29,040 --> 01:18:29,720 SPONGESSORS OF CLINICAL RESEARCH 1766 01:18:29,720 --> 01:18:31,160 AND PATIENT COMMUNITIES HAVE A 1767 01:18:31,160 --> 01:18:32,240 SHARED INTEREST BUT YOU HAVE TO 1768 01:18:32,240 --> 01:18:33,960 START FROM PLACE OF WELL, YOU 1769 01:18:33,960 --> 01:18:35,800 KNOW, HOW WELL DO WE KNOW EACH 1770 01:18:35,800 --> 01:18:38,320 OTHER AND HOW WELL DO WE KNOW 1771 01:18:38,320 --> 01:18:40,040 OUR CAPABILITIES AND HOW WELL DO 1772 01:18:40,040 --> 01:18:43,320 WE KNOW OUR OWN CAPABILITIES AND 1773 01:18:43,320 --> 01:18:46,960 THAT INITIAL STUDY WRAPPED OUT 1774 01:18:46,960 --> 01:18:48,400 WHERE ENTITIES SAW THE 1775 01:18:48,400 --> 01:18:52,560 CHALLENGES TO ENGAGING WITH EACH 1776 01:18:52,560 --> 01:18:56,160 OTHER BUT THEIR PERCEIVED VALUE 1777 01:18:56,160 --> 01:18:59,680 NAD THAT DISCUSSION AND COMING 1778 01:18:59,680 --> 01:19:03,600 OUT OF THAT WORK THIS MODEL THAT 1779 01:19:03,600 --> 01:19:05,240 FOLKS HAVE BEEN ABLE TO OPEN UP 1780 01:19:05,240 --> 01:19:07,720 AND TAKE A LOOK AT WAS REALLY 1781 01:19:07,720 --> 01:19:13,440 PUT FORWARD TO SAY HERE THE 1782 01:19:13,440 --> 01:19:14,640 OPPORTUNITIES AND PATIENT GROUPS 1783 01:19:14,640 --> 01:19:19,000 CAN TAKE TO ENGAGE IN THE 1784 01:19:19,000 --> 01:19:23,760 CLINICAL TRIAL CONTINUUM 1785 01:19:23,760 --> 01:19:25,440 RECOGNIZING WHAT ARE SOME OF THE 1786 01:19:25,440 --> 01:19:26,240 SCIENTIFIC MILESTONES THAT NEED 1787 01:19:26,240 --> 01:19:30,160 TO BE ACHIEVED IN ORDER TO MOVE 1788 01:19:30,160 --> 01:19:32,160 FORWARD IN THE PROCESS AND SO 1789 01:19:32,160 --> 01:19:36,080 THE MODEL NICE LOW LAYS OUT AT A 1790 01:19:36,080 --> 01:19:38,680 HIGH LEVEL, THAT THIS STAGE OF 1791 01:19:38,680 --> 01:19:40,720 DEVELOPMENT LOOKING AT KIND OF 1792 01:19:40,720 --> 01:19:46,160 DISCOVER RODISCOVERY AND PRE CLK 1793 01:19:46,160 --> 01:19:50,680 AND THE REASON TO BELIEVE FROM A 1794 01:19:50,680 --> 01:19:53,360 SCIENTIFIC RATIONALE STANDPOINT 1795 01:19:53,360 --> 01:19:55,520 AND MOVING INTO THOSE CLINICAL 1796 01:19:55,520 --> 01:19:57,920 PHASES OF DEMONSTRATING SAFETY 1797 01:19:57,920 --> 01:20:00,680 AND EFFICACY AND WHAT DOES A 1798 01:20:00,680 --> 01:20:02,080 REGULATORY REVIEW LOOK LIKE AND 1799 01:20:02,080 --> 01:20:04,120 THE DECISION MAKERS AND THE DATA 1800 01:20:04,120 --> 01:20:05,760 PACKAGE THAT IS SUBMIT AND WHAT 1801 01:20:05,760 --> 01:20:08,000 NEEDS TO HAPPEN IN A POST 1802 01:20:08,000 --> 01:20:09,080 APPROVAL PROCESS. 1803 01:20:09,080 --> 01:20:10,840 SO NICELY LAYS OUT WHAT ARE 1804 01:20:10,840 --> 01:20:12,880 THOSE MAJOR MILESTONES THAT NEED 1805 01:20:12,880 --> 01:20:15,520 TO BE ACHIEVED ALONG THE 1806 01:20:15,520 --> 01:20:23,840 DEVELOPMENT PATHWAY AND WITHIN 1807 01:20:23,840 --> 01:20:24,960 THOSE STAGES WHAT RECOGNIZES TO 1808 01:20:24,960 --> 01:20:27,880 MOVE IT FORWARD AND SO, IN THAT 1809 01:20:27,880 --> 01:20:29,200 DISCOVERY AND PRE CLINICAL 1810 01:20:29,200 --> 01:20:33,840 SPACE, IT'S REALLY AROUND WHAT 1811 01:20:33,840 --> 01:20:34,880 ARE THE STUNTS TO DERISK THE 1812 01:20:34,880 --> 01:20:36,680 SCIENCE THAT ENABLES THE 1813 01:20:36,680 --> 01:20:37,720 ADVANCEMENT AND TO CLINICAL 1814 01:20:37,720 --> 01:20:40,680 RESEARCH AND SOME OF THE 1815 01:20:40,680 --> 01:20:42,920 OPPORTUNITIES THERE ARE GRANT 1816 01:20:42,920 --> 01:20:47,600 FUNDING OF RESEARCH AND 1817 01:20:47,600 --> 01:20:49,000 IDENTIFYING WHAT ARE SOME OF THE 1818 01:20:49,000 --> 01:20:50,560 SCIENTIFIC NETWORKS, WHERE THE 1819 01:20:50,560 --> 01:20:53,400 MOUSE MODELS AND WHERE ARE THE 1820 01:20:53,400 --> 01:20:55,320 AS SAYS BEING DEVELOPED AND ALL 1821 01:20:55,320 --> 01:20:57,880 THOSE KINDS OF THINGS AND WHEN 1822 01:20:57,880 --> 01:21:00,280 YOU GO INTO OPERATIONALIZING 1823 01:21:00,280 --> 01:21:05,560 CLINICAL RESEARCH, HOW CAN 1824 01:21:05,560 --> 01:21:08,880 PATIENT GROUPS BE INFORMING 1825 01:21:08,880 --> 01:21:11,640 INDUSTRY TO OPTIMIZE THE 1826 01:21:11,640 --> 01:21:12,560 FEASIBILITY AND THOSE 1827 01:21:12,560 --> 01:21:14,480 OPERATIONAL ASPECTS OF THE TRIAL 1828 01:21:14,480 --> 01:21:16,960 WITH A SHARED PURPOSE OF 1829 01:21:16,960 --> 01:21:19,560 REDUCING BURDEN ON THE PATIENT 1830 01:21:19,560 --> 01:21:21,320 COMMUNITY, RIGHT. 1831 01:21:21,320 --> 01:21:24,560 ENHANCING RECRUITMENT AND 1832 01:21:24,560 --> 01:21:24,960 RETENTION. 1833 01:21:24,960 --> 01:21:26,520 ALL OF THESE THINGS IMPORTANT TO 1834 01:21:26,520 --> 01:21:28,960 BOTH PARTICIPANTS AND TO 1835 01:21:28,960 --> 01:21:30,800 SPONSORS AND HOW DO WE LEVERAGE 1836 01:21:30,800 --> 01:21:32,720 THE EXPERTISE THESE ENTITIES 1837 01:21:32,720 --> 01:21:35,760 BRING TO THE TABLE AND FURTHER 1838 01:21:35,760 --> 01:21:38,960 ALONG IN THE PROCESS AND HOW DO 1839 01:21:38,960 --> 01:21:42,200 PATIENTS ENGAGE IN THAT 1840 01:21:42,200 --> 01:21:52,720 DECISION-MAKING AND I THINK WHY 1841 01:22:00,640 --> 01:22:09,520 IS THIS THAT PEOPLE CAN COME 1842 01:22:09,520 --> 01:22:11,080 TOGETHER AND SPEAK TO EACH OTHER 1843 01:22:11,080 --> 01:22:13,440 WHAT IS IMPORTANT FROM A PATIENT 1844 01:22:13,440 --> 01:22:14,720 ADVOCACY ORGANIZATION STAND 1845 01:22:14,720 --> 01:22:15,560 POINT AND WE MIGHT NOT BE ABLE 1846 01:22:15,560 --> 01:22:17,400 TO DO EVERYTHING BUT WE CAN 1847 01:22:17,400 --> 01:22:19,280 CHECK AND WE CAN SET OUR 1848 01:22:19,280 --> 01:22:21,680 MISSIONS AND OUR CAPE A LOTS 1849 01:22:21,680 --> 01:22:24,160 AGAINST WHAT IS NEEDED FOR OUR 1850 01:22:24,160 --> 01:22:26,080 COMMUNITY AND HOW WE K WE FIT 1851 01:22:26,080 --> 01:22:29,040 INTO THIS FRAMEWORK SO A LONG 1852 01:22:29,040 --> 01:22:33,280 WINDED ANSWER, I HOPE THAT WAS 1853 01:22:33,280 --> 01:22:33,520 HELPFUL. 1854 01:22:33,520 --> 01:22:35,760 >> YES, AND I THINK IT'S GREAT 1855 01:22:35,760 --> 01:22:37,200 AND AS STATED IN THE CHAT, 1856 01:22:37,200 --> 01:22:39,800 PEOPLE WILL SEE THAT IF THERE'S 1857 01:22:39,800 --> 01:22:42,400 MORE ON THE WEBSITE AND I WOULD 1858 01:22:42,400 --> 01:22:44,160 JUST ENCOURAGE EVERYONE TO GO ON 1859 01:22:44,160 --> 01:22:45,840 THERE AND FIND WHAT MIGHT BE 1860 01:22:45,840 --> 01:22:48,040 USEFUL FOR YOU. 1861 01:22:48,040 --> 01:22:54,080 SO, LET'S MOVE ON TO YAEL. 1862 01:22:54,080 --> 01:22:56,200 YOU'VE SEEN THIS FRAMEWORK AND 1863 01:22:56,200 --> 01:22:58,120 THERE'S A EUROPEAN FRAMEWORK 1864 01:22:58,120 --> 01:23:01,640 SIMILAR THAT CAN HELP GUY 1865 01:23:01,640 --> 01:23:04,920 PATIENTS THROUGH AND MAHZI 1866 01:23:04,920 --> 01:23:05,880 THERAPEUTICS AND YOU HAVE A 1867 01:23:05,880 --> 01:23:08,240 GROUP OF PEOPLE THAT RUN A 1868 01:23:08,240 --> 01:23:10,160 BOOTCAMP THAT GUIDES PATIENTS 1869 01:23:10,160 --> 01:23:12,520 THROUGH THIS PROCESS, RIGHT, TO 1870 01:23:12,520 --> 01:23:15,000 INTRODUCE AND BRING PATIENT 1871 01:23:15,000 --> 01:23:16,800 GROUPS AND INDUSTRY TOGETHER. 1872 01:23:16,800 --> 01:23:19,560 CAN YOU TALK ABOUT THAT AND OF 1873 01:23:19,560 --> 01:23:21,920 COURSE AFTER THAT, WHAT YOU DO 1874 01:23:21,920 --> 01:23:23,560 WITH MAHZI. 1875 01:23:23,560 --> 01:23:23,880 >> SURE. 1876 01:23:23,880 --> 01:23:25,800 THANK YOU FOR HAVING ME. 1877 01:23:25,800 --> 01:23:28,080 SO, I'D LICK TO FOLLOW-UP ON 1878 01:23:28,080 --> 01:23:29,720 WHAT CATHERINE WAS DISCUSSING, 1879 01:23:29,720 --> 01:23:30,520 THE FRAMEWORK. 1880 01:23:30,520 --> 01:23:32,240 I THINK THE FRAMEWORK IS 1881 01:23:32,240 --> 01:23:34,320 EXCELLENT AND IT'S A GREAT 1882 01:23:34,320 --> 01:23:34,920 STARTLING POINT. 1883 01:23:34,920 --> 01:23:39,120 WHAT WE REALIZED DURING MY TIME 1884 01:23:39,120 --> 01:23:39,960 AT ULTRA-GENICS AND OF COURSE 1885 01:23:39,960 --> 01:23:43,160 NOW WITH MAHZI, THERE ARE A LOT 1886 01:23:43,160 --> 01:23:45,600 OF NEW FOUNDATIONS THAT ARE 1887 01:23:45,600 --> 01:23:48,000 COMING TO LIFE IN THE LAST FEW 1888 01:23:48,000 --> 01:23:50,720 YEARS AND SINCE THAT PUBLICATION 1889 01:23:50,720 --> 01:23:52,640 IN 2015, THE LANDSCAPE HAS 1890 01:23:52,640 --> 01:23:55,120 CHANGED SIGNIFICANTLY AND THERE 1891 01:23:55,120 --> 01:23:56,440 ARE A LOT OF ESTABLISHED 1892 01:23:56,440 --> 01:23:57,400 FOUNDATION THAT'S HAVE BEEN 1893 01:23:57,400 --> 01:23:59,280 THROUGH INTERACTIONS WITH 1894 01:23:59,280 --> 01:24:01,480 INDUSTRY AND THEY HAVE TAKEN 1895 01:24:01,480 --> 01:24:03,280 DRUGS AND DEVELOPED THEM AND 1896 01:24:03,280 --> 01:24:04,840 HANDED THEM OVER TO PARTNERS BUT 1897 01:24:04,840 --> 01:24:06,520 THERE ARE MANY, MANY NEW 1898 01:24:06,520 --> 01:24:07,840 FOUNDATION AND SOME OF THEM I 1899 01:24:07,840 --> 01:24:10,520 SEE HERE IN THE AUDIENCE AND ARE 1900 01:24:10,520 --> 01:24:12,080 REALLY STARTING OUT AND MANY OF 1901 01:24:12,080 --> 01:24:14,440 THEM ARE NOT BIOLOGISTS BY 1902 01:24:14,440 --> 01:24:17,720 EDUCATION OR DRUG DEVELOPMENT BY 1903 01:24:17,720 --> 01:24:19,520 PROFESSION AND THE GAP BETWEEN 1904 01:24:19,520 --> 01:24:21,280 THE FRAMEWORK AND ACTUALLY 1905 01:24:21,280 --> 01:24:28,760 PUTTING IT TO PRACTICE IS PRETTY 1906 01:24:28,760 --> 01:24:29,720 SIGNIFICANT BECAUSE YOU LOOK AT 1907 01:24:29,720 --> 01:24:31,360 IT AND NOT UNDERSTAND THE STEPS 1908 01:24:31,360 --> 01:24:32,200 BECAUSE YOU'VE NEVER BEEN 1909 01:24:32,200 --> 01:24:34,840 THROUGH IT BEFORE SO AFTER 1910 01:24:34,840 --> 01:24:36,720 RESPONDING TO MANY INDIVIDUAL 1911 01:24:36,720 --> 01:24:39,160 FOUNDATIONS AND PARENTS AND 1912 01:24:39,160 --> 01:24:40,920 PATIENTS ON ALMOST A WEEKLY 1913 01:24:40,920 --> 01:24:42,960 BASIS AT ULTRA-GENICS, WE 1914 01:24:42,960 --> 01:24:45,120 DECIDED TO PUT TOGETHER AN EVENT 1915 01:24:45,120 --> 01:24:48,280 THAT WOULD EDUCATE PEOPLE THAT 1916 01:24:48,280 --> 01:24:53,440 ARE NEW TO THE DRUG DEVELOPMENT 1917 01:24:53,440 --> 01:24:55,240 SCENE OR AREA AND EDUCATE THEM 1918 01:24:55,240 --> 01:24:58,400 ABOUT WHAT IT'S ALL ABOUT SO WE 1919 01:24:58,400 --> 01:25:00,240 ORGANIZED A THREE-DAY EVENT 1920 01:25:00,240 --> 01:25:02,200 WHERE PEOPLE COME TO THE 1921 01:25:02,200 --> 01:25:13,160 ULTRA-AGAIN -- WE TRYTO COMPLAT 1922 01:25:13,160 --> 01:25:16,240 STARTING FROM HOW TO 1923 01:25:16,240 --> 01:25:17,640 COLLABORATION WITH ACADEMICS AND 1924 01:25:17,640 --> 01:25:18,520 NEGOTIATE A LICENSE AGREEMENT 1925 01:25:18,520 --> 01:25:22,480 ALL THE WAY THROUGH REGULATORY 1926 01:25:22,480 --> 01:25:23,800 CLINICAL END POINTS TALKING 1927 01:25:23,800 --> 01:25:24,720 ABOUT REGISTRIES AND NATURAL 1928 01:25:24,720 --> 01:25:25,920 HISTORY STUDIES FOR THOSE WHO 1929 01:25:25,920 --> 01:25:29,360 ARE NEW TO THIS OR MAY BE 1930 01:25:29,360 --> 01:25:30,560 STARTED OUT AND KNOW WHAT IS 1931 01:25:30,560 --> 01:25:32,680 COMING ON THE HORIZON IT'S A 1932 01:25:32,680 --> 01:25:36,960 GREAT OPPORTUNITY TO NOT ONLY 1933 01:25:36,960 --> 01:25:39,880 LEARN BUT ALSO INTERACT WITH 1934 01:25:39,880 --> 01:25:41,040 EXPERTS AND GIVE TALKS WITH THE 1935 01:25:41,040 --> 01:25:42,840 BOT CAMP AND PEERS AND SHARE 1936 01:25:42,840 --> 01:25:43,680 BEST PRACTICES. 1937 01:25:43,680 --> 01:25:45,800 WE KEEP REFINING AND IMPROVING 1938 01:25:45,800 --> 01:25:47,720 THE PROGRAM BASED ON FEEDBACK 1939 01:25:47,720 --> 01:25:57,800 FROM PARTICIPANTS AND HOPEFULLY 1940 01:25:57,800 --> 01:25:59,240 THEY'LL OPEN A FOLLOW-UP FOR 1941 01:25:59,240 --> 01:26:00,680 PEOPLE THOUGH WANT TO KEEP 1942 01:26:00,680 --> 01:26:01,600 ENGAGING WITH THE GROUPS THAT 1943 01:26:01,600 --> 01:26:02,640 PARTICIPATE TO HELP THEM 1944 01:26:02,640 --> 01:26:04,440 THROUGHOUT THEIR JOURNEY ON A 1945 01:26:04,440 --> 01:26:05,880 SPECIFIC HURDLES THAT THEY COME 1946 01:26:05,880 --> 01:26:07,440 UP WITH AND I SEE HERE IN THE 1947 01:26:07,440 --> 01:26:09,800 AUDIENCE THAT THERE ARE A LOT OF 1948 01:26:09,800 --> 01:26:10,760 FOUNDATIONS AND DIFFERENT LEVELS 1949 01:26:10,760 --> 01:26:15,000 OF MATURITY AND WE DO CATER TO 1950 01:26:15,000 --> 01:26:17,480 THE ONES THAT ARE NEWER AND LESS 1951 01:26:17,480 --> 01:26:19,000 EXPERIENCED BUT WHEN ANYONE 1952 01:26:19,000 --> 01:26:23,960 KNOCKS ON OUR DOOR AND HAS A 1953 01:26:23,960 --> 01:26:25,160 SPECIFIC PROBLEM OR ISSUE THEY 1954 01:26:25,160 --> 01:26:26,800 NEED HELP WITH WE ENGAGE WITH 1955 01:26:26,800 --> 01:26:30,640 THE DIFFERENT EXPERTS AND THE 1956 01:26:30,640 --> 01:26:33,640 SPONSORS OF THE BOOTCAMP THAT 1957 01:26:33,640 --> 01:26:35,200 LEND THEIR EXPERTISE AND WE TROY 1958 01:26:35,200 --> 01:26:37,840 TO HELP ON A CASE-BY-CASE BASIS 1959 01:26:37,840 --> 01:26:38,040 AS WELL. 1960 01:26:38,040 --> 01:26:40,760 THIS IS GIVEN US ACCESS AND 1961 01:26:40,760 --> 01:26:44,760 BETTER UNDERSTANDING OF WHAT THE 1962 01:26:44,760 --> 01:26:46,800 ISSUES THAT IS THE FOUNDATIONS 1963 01:26:46,800 --> 01:26:50,120 HAVE TO DEAL WITH WHEN THEY'RE 1964 01:26:50,120 --> 01:26:51,880 STARTING OUT AND IT COULD BE 1965 01:26:51,880 --> 01:26:58,320 LOOKING AT A CHINESE PICTURE 1966 01:26:58,320 --> 01:27:00,240 BOOK FOR A NON CHINESE SPEAKER. 1967 01:27:00,240 --> 01:27:02,640 WE HAVE OUR OWN TERM ON OLE 1968 01:27:02,640 --> 01:27:14,480 GOUGH AND WE TERMINOLOGY SOWE'RS 1969 01:27:15,440 --> 01:27:15,800 POSSIBLE. 1970 01:27:15,800 --> 01:27:18,240 TO SIMPLIFY THE PROCESS SO 1971 01:27:18,240 --> 01:27:20,120 PEOPLE WILL FEEL MORE 1972 01:27:20,120 --> 01:27:21,280 COMFORTABLE AS THEY DIVE INTO 1973 01:27:21,280 --> 01:27:23,400 DRUG DEVELOPMENT. 1974 01:27:23,400 --> 01:27:27,240 THAT'S THE BOOTCAMP. 1975 01:27:27,240 --> 01:27:28,960 POST COVID WE'RE REFORM ATING 1976 01:27:28,960 --> 01:27:30,840 BUT WE HOPE TO RUN IT TWICE AS 1977 01:27:30,840 --> 01:27:32,960 YEAR AND WE DO IT WITH THE 1978 01:27:32,960 --> 01:27:35,960 SUPPORT OF GLOBAL GENES AND THE 1979 01:27:35,960 --> 01:27:37,120 REGISTRATION GOES TO THEM SO IF 1980 01:27:37,120 --> 01:27:44,440 ANYONE WANTS MORE DETAILS, 1981 01:27:44,440 --> 01:27:50,440 CONTACT ME AN I'LL CONTACT. 1982 01:27:50,440 --> 01:27:53,680 MAHZI I AM INNATED FROM THE 1983 01:27:53,680 --> 01:27:54,960 BOOTCAMP BECAUSE I SAW GROUPS 1984 01:27:54,960 --> 01:27:57,120 THAT ARE FUNDING BASIC RESEARCH 1985 01:27:57,120 --> 01:27:59,120 AND LAURA CAN TALK A LITTLE BIT 1986 01:27:59,120 --> 01:28:00,760 MORE ABOUT HOW BLUE FIELD 1987 01:28:00,760 --> 01:28:05,440 PROJECT IS HANDLING IT AND A LOT 1988 01:28:05,440 --> 01:28:10,680 OF GROW GROUPS ARE FUNDING IT AD 1989 01:28:10,680 --> 01:28:11,840 TAKING THE -- THEY DON'T HAVE 1990 01:28:11,840 --> 01:28:13,320 THE KNOW HOW OR EXPERTISE TO 1991 01:28:13,320 --> 01:28:14,920 TAKE IT FURTHER OR THE FUNDING 1992 01:28:14,920 --> 01:28:16,960 INFORM TAKE IT FURTHER BECAUSE A 1993 01:28:16,960 --> 01:28:20,560 LOT OF THESE ARE GENETIC BASED 1994 01:28:20,560 --> 01:28:22,480 THERAPIES AND THESE ARE NOT 1995 01:28:22,480 --> 01:28:23,920 CHEAP AND WE NEED RESOURCES IN 1996 01:28:23,920 --> 01:28:25,840 ORDER TO TAKE THOSE INTO THE 1997 01:28:25,840 --> 01:28:27,480 CLINIC AND FURTHER AND I STARTED 1998 01:28:27,480 --> 01:28:30,520 THE COMPANY TO TRY AND FIRST OF 1999 01:28:30,520 --> 01:28:31,760 ALL BE A SOURCE OF INFORMATION 2000 01:28:31,760 --> 01:28:33,720 TO GROUPS THAT WANT TO DO THIS 2001 01:28:33,720 --> 01:28:35,520 AND CAN COME TO US AND SEEK OUR 2002 01:28:35,520 --> 01:28:37,080 ASSISTANCE AND PUTTING TOGETHER 2003 01:28:37,080 --> 01:28:39,960 A RESEARCH PLAN AND ALSO WE TOOK 2004 01:28:39,960 --> 01:28:43,800 ON THREE PROGRAMS TO GENE 2005 01:28:43,800 --> 01:28:45,880 THERAPY AND ONE FOR SPECIFIC 2006 01:28:45,880 --> 01:28:47,320 NEURO DEVELOPMENTAL DISORDERS 2007 01:28:47,320 --> 01:28:49,760 AND HOPING TO BRING ON MORE AS 2008 01:28:49,760 --> 01:28:51,760 TIME GOES BY AND HOPEFULLY 2009 01:28:51,760 --> 01:28:54,920 FUNDING WILL COME TO ENABLE US 2010 01:28:54,920 --> 01:28:57,120 TO TAKE ON MORE PROGRAMS AND 2011 01:28:57,120 --> 01:28:58,520 REALLY WORK HAND AND HAND WITH 2012 01:28:58,520 --> 01:29:00,440 THE PATIENT GROUPS WHO BRING 2013 01:29:00,440 --> 01:29:02,440 THEIR OWN EXPERTISE, THE 2014 01:29:02,440 --> 01:29:04,400 OUTREACH TO THE COMMUNITY AND 2015 01:29:04,400 --> 01:29:06,440 THE DEEP UNDERSTANDING OF THE 2016 01:29:06,440 --> 01:29:09,960 DISEASE AND THE DISORDER AND 2017 01:29:09,960 --> 01:29:11,720 ALSO THE ABILITY TO COLLECT 2018 01:29:11,720 --> 01:29:15,360 INFORMATION FROM THE COMMUNITY 2019 01:29:15,360 --> 01:29:20,960 AND HELP ENROLL THESE AND BRING 2020 01:29:20,960 --> 01:29:22,360 OUR EXPERTISE AND DRUG 2021 01:29:22,360 --> 01:29:23,560 DEVELOPMENT AND HOPEFULLY 2022 01:29:23,560 --> 01:29:27,040 TOGETHER TAKE A DRUG INTO THE 2023 01:29:27,040 --> 01:29:31,080 CLINIC AND MAYBE EVEN 2024 01:29:31,080 --> 01:29:36,080 COMMERCIALIZE AND IN THE CHAT, 2025 01:29:36,080 --> 01:29:39,600 YOU ARE CONTACT INFORMATION OR 2026 01:29:39,600 --> 01:29:40,120 WHERE PEOPLE -- 2027 01:29:40,120 --> 01:29:42,320 >> I'M HAPPY TO DO THAT. 2028 01:29:42,320 --> 01:29:45,040 THAT'S A GREAT SEG WAY TO LAURA 2029 01:29:45,040 --> 01:29:46,720 BECAUSE YOUR CHIEF SCIENTIFIC 2030 01:29:46,720 --> 01:29:50,160 OFFICER OF BLUEFIELD FOUNDATION 2031 01:29:50,160 --> 01:29:52,440 FOCUS OZ ON FRONTING A CURE FOR 2032 01:29:52,440 --> 01:29:56,800 FTD AND YOU HAVE WORKED WITH 2033 01:29:56,800 --> 01:29:58,440 INDUSTRY AND NOW I HAVE TWO 2034 01:29:58,440 --> 01:30:00,000 DRUGS IN CLINICAL TRIALS AND 2035 01:30:00,000 --> 01:30:02,240 YOU'VE ALSO SEEN THIS FRAMEWORK 2036 01:30:02,240 --> 01:30:04,880 AND HOW DID YOU GUYS START DOING 2037 01:30:04,880 --> 01:30:09,080 YOUR WORK WITHOUT THIS KIND OF 2038 01:30:09,080 --> 01:30:10,280 ROADMAP AT THAT TIME? 2039 01:30:10,280 --> 01:30:11,840 CAN YOU SHARE WITH US A LITTLE 2040 01:30:11,840 --> 01:30:13,000 BIT ABOUT YOUR EXPERIENCE? 2041 01:30:13,000 --> 01:30:15,120 >> SURE. 2042 01:30:15,120 --> 01:30:15,840 THANK YOU. 2043 01:30:15,840 --> 01:30:17,600 YES, SO, THE BLUEFIELD PROJECT 2044 01:30:17,600 --> 01:30:20,000 WAS FOUNDED IN 2009 AND WE HAVE 2045 01:30:20,000 --> 01:30:23,440 A PRE DETERMINED SUNSET DATE OF 2046 01:30:23,440 --> 01:30:23,880 2025. 2047 01:30:23,880 --> 01:30:26,040 WE'RE NEARING THE END OF OUR 2048 01:30:26,040 --> 01:30:32,800 EXISTENCE AND ACTUALLY THERE ARE 2049 01:30:32,800 --> 01:30:33,720 FOUR COMPANIES HAVE DRUGS IN 2050 01:30:33,720 --> 01:30:34,920 CLINICAL TRIALS FOR THE DISEASE 2051 01:30:34,920 --> 01:30:37,280 WE WORK ON WHICH IS FTD CAUSED 2052 01:30:37,280 --> 01:30:41,760 BY MUTATIONS IN AN ADULT ONSET 2053 01:30:41,760 --> 01:30:42,400 NEURODEGENERATIVE DISEASE 2054 01:30:42,400 --> 01:30:44,680 STRIKING IN THE MID-60S WITH A 2055 01:30:44,680 --> 01:30:48,920 SIX TO 10-YEAR TIME UNTIL DEATH. 2056 01:30:48,920 --> 01:30:52,080 SO, WE ARE VERY FORTUNATE TO 2057 01:30:52,080 --> 01:30:55,040 HAVE THE POSITION WHEN WE DO 2058 01:30:55,040 --> 01:30:57,760 SUNSET, WE HOPEFULLY WILL HAVE 2059 01:30:57,760 --> 01:30:59,320 AN APPROVED DRUGS OR DRUGS IN 2060 01:30:59,320 --> 01:31:01,800 TRIALS AND WILL BE APPROVED OR 2061 01:31:01,800 --> 01:31:03,280 AT LEAST HAVE READOUTS SOON AND 2062 01:31:03,280 --> 01:31:05,240 I THINK THAT WHEN I LOOK BACK 2063 01:31:05,240 --> 01:31:07,280 OVER THIS, EACH FRAMEWORK, I WAS 2064 01:31:07,280 --> 01:31:08,840 PLEASED TO SEE THAT 2065 01:31:08,840 --> 01:31:10,240 INDEPENDENTLY BLUE FIELD HAD 2066 01:31:10,240 --> 01:31:12,520 SINCE 2009, REALLY DONE MANY OF 2067 01:31:12,520 --> 01:31:15,080 THE THINGS ON THAT FRAMEWORK BUT 2068 01:31:15,080 --> 01:31:17,760 I THINK IF YOU ASKED ME IN 2009 2069 01:31:17,760 --> 01:31:20,040 ABOUT THAT FRAMEWORK I WOULD NOT 2070 01:31:20,040 --> 01:31:21,240 HAVE MANY TERMS ON IT EXPLAINED 2071 01:31:21,240 --> 01:31:23,880 TO ME AND SO I THINK THAT BRINGS 2072 01:31:23,880 --> 01:31:25,440 ME TO THE POINT IN MANY 2073 01:31:25,440 --> 01:31:26,760 FOUNDATIONS THAT ARE ATTENDING 2074 01:31:26,760 --> 01:31:28,480 TODAY, IF YOU HAVE NOT ALREADY 2075 01:31:28,480 --> 01:31:31,320 AND PROBABLY MANY OF YOU HAVE 2076 01:31:31,320 --> 01:31:32,880 AND WHICH BENEFITED FROM THE 2077 01:31:32,880 --> 01:31:34,280 EXPERTISE OF OTHER COLLEAGUES AT 2078 01:31:34,280 --> 01:31:35,960 OTHER FOUNDATIONS WHO WERE 2079 01:31:35,960 --> 01:31:37,400 GENEROUS IN SHARING ALL KINDS OF 2080 01:31:37,400 --> 01:31:39,160 INFORMATION AND EVEN A TEMPLATES 2081 01:31:39,160 --> 01:31:40,440 FOR FUNDING AGREEMENTS AND ALL 2082 01:31:40,440 --> 01:31:42,440 KINDS OF THINGS AS WE STARTED ON 2083 01:31:42,440 --> 01:31:44,240 AND IN VARIOUS STAGES ALONG THE 2084 01:31:44,240 --> 01:31:45,920 ROAD AND SO I WOULD ENCOURAGE 2085 01:31:45,920 --> 01:31:48,560 ALL OF US TO JUST CONTINUE TO BE 2086 01:31:48,560 --> 01:31:50,360 AS COLLEGIAL AND COLLABORATIVE 2087 01:31:50,360 --> 01:31:52,720 AS WE ARE IN SHARING OUR 2088 01:31:52,720 --> 01:31:54,680 INFORMATION AND OUR EXPERIENCES 2089 01:31:54,680 --> 01:31:55,720 AND ALONG THIS WAY BECAUSE 2090 01:31:55,720 --> 01:31:57,160 THERE'S NO REASON TO REINVENT 2091 01:31:57,160 --> 01:32:00,160 THE WHEEL AND I THINK MANY OF 2092 01:32:00,160 --> 01:32:04,200 THE ITEMS ON THIS CTI FRAMEWORK 2093 01:32:04,200 --> 01:32:07,360 CAN BE CONDUCTED SIMULTANEOUSLY 2094 01:32:07,360 --> 01:32:10,200 AND BECAUSE TIME IS ALWAYS OF 2095 01:32:10,200 --> 01:32:12,760 THE MOST URGENCY IN THESE 2096 01:32:12,760 --> 01:32:14,440 DISEASES AND BEING ABLE AND 2097 01:32:14,440 --> 01:32:16,440 SMALL FOUNDATION TO DO THINGS 2098 01:32:16,440 --> 01:32:17,960 SIMULTANEOUSLY REALLY MEANS 2099 01:32:17,960 --> 01:32:19,640 PIGGING BACKING ON THE EFFORTS 2100 01:32:19,640 --> 01:32:20,480 OF OTHERS. 2101 01:32:20,480 --> 01:32:22,600 I THINK THAT THE ROADMAP, WE'RE 2102 01:32:22,600 --> 01:32:24,600 AN AT THE FOURTH PART OF THAT 2103 01:32:24,600 --> 01:32:26,000 ROADMAP AND I HOPE WE WILL BE 2104 01:32:26,000 --> 01:32:29,440 AND I HOPE I CAN REFER TO IT FOR 2105 01:32:29,440 --> 01:32:31,240 GUIDANCE AS WE HAVE OUR 2106 01:32:31,240 --> 01:32:32,640 FORTUNATE ENOUGH TO BE IN THAT 2107 01:32:32,640 --> 01:32:34,520 POST APPROVAL SITUATION BUT I DO 2108 01:32:34,520 --> 01:32:35,800 THINK THE FRAMEWORK IS HELPFUL 2109 01:32:35,800 --> 01:32:37,840 AND A GO AHEAD THING TO REFER 2110 01:32:37,840 --> 01:32:40,000 BACK TO OVER TIME. 2111 01:32:40,000 --> 01:32:42,040 >> THAT'S AWESOME. 2112 01:32:42,040 --> 01:32:43,040 CATHERINE, YOU WANTED TO ADD 2113 01:32:43,040 --> 01:32:43,720 ABOUT THE TOOLS. 2114 01:32:43,720 --> 01:32:45,440 THIS IS ALL ABOUT TOOLS AND WHAT 2115 01:32:45,440 --> 01:32:48,640 WE CAN USE TO HELP OUR -- I JUST 2116 01:32:48,640 --> 01:32:55,880 WANT TO BUILD ON THE COMMENTS IN 2117 01:32:55,880 --> 01:32:57,640 THAT THIS IS A HIGH-LEVEL 2118 01:32:57,640 --> 01:32:59,160 FRAMEWORK THAT IS DIFFICULT TO 2119 01:32:59,160 --> 01:33:00,480 TRANSLATE TO THE TOOLS THAT WE 2120 01:33:00,480 --> 01:33:04,000 NEED TO ACTUALLY HAVE IT AND THE 2121 01:33:04,000 --> 01:33:08,040 BOOTCAMP IS JUST A GREAT 2122 01:33:08,040 --> 01:33:10,760 OFFERING AND FOR FOLKS 2123 01:33:10,760 --> 01:33:12,400 UNDERSTANDING THIS AND THERE ARE 2124 01:33:12,400 --> 01:33:13,480 NEW COMPANIES ALWAYS COMING INTO 2125 01:33:13,480 --> 01:33:15,600 THE RARE DISEASE SPACE, THAT 2126 01:33:15,600 --> 01:33:19,520 NEED INTERNALLY, TO BE ABLE TO 2127 01:33:19,520 --> 01:33:25,480 HAVE TOOLS FOR SYSTEMATIC 2128 01:33:25,480 --> 01:33:26,440 EASTBOUND GAGEMENT RIGHT THAT IS 2129 01:33:26,440 --> 01:33:30,480 WHAT THE PATIENT COMMUNITIES 2130 01:33:30,480 --> 01:33:32,760 WANTS AND HOW THEIR COMPANY 2131 01:33:32,760 --> 01:33:37,440 FEELS THEIR FREE TO OPERATE AND 2132 01:33:37,440 --> 01:33:38,960 I KNOW PFIZER HAS TAKEN GREAT 2133 01:33:38,960 --> 01:33:40,880 EFFORT TO BUILD INTERNAL TOOLS 2134 01:33:40,880 --> 01:33:45,400 FOR COLLEAGUES INVOLVED IN 2135 01:33:45,400 --> 01:33:48,040 CLINICAL RESEARCH TO DO THIS 2136 01:33:48,040 --> 01:33:49,280 APPROPRIATELY, SYSTEMATICALLY 2137 01:33:49,280 --> 01:33:53,880 AND CONSISTENTLY AND IN A WAY 2138 01:33:53,880 --> 01:33:55,680 THAT IS PALLETABLE BY THE 2139 01:33:55,680 --> 01:33:56,280 PATIENT COMMUNITY. 2140 01:33:56,280 --> 01:33:58,760 SO I JUST WANTED TO ADD THAT 2141 01:33:58,760 --> 01:34:00,280 INTERNAL TOOLS FOR COMPANIES IS 2142 01:34:00,280 --> 01:34:03,400 JUST AS IMPORTANT AS BEING ABLE 2143 01:34:03,400 --> 01:34:05,760 TO SHARE AND DEVELOP TOOLS 2144 01:34:05,760 --> 01:34:09,920 EXTERNAL LOLY FOR FOLKS. 2145 01:34:09,920 --> 01:34:10,760 >> CATHERINE, THERE ARE PEOPLE 2146 01:34:10,760 --> 01:34:12,520 IN ATTENDANCE WHO ARE JUST 2147 01:34:12,520 --> 01:34:14,800 BEGINNING THEIR JOURNEYS HERE 2148 01:34:14,800 --> 01:34:16,360 AND ALL OF THIS IS TRYING TO 2149 01:34:16,360 --> 01:34:18,200 FIND THE RIGHT PARTNER, RIGHT, 2150 01:34:18,200 --> 01:34:21,080 TO ACHIEVE OUR GOALS. 2151 01:34:21,080 --> 01:34:24,840 SO, WHAT WOULD YOU SAY PATIENT 2152 01:34:24,840 --> 01:34:25,920 ADVOCATE GROUPS WHO ARE STARTING 2153 01:34:25,920 --> 01:34:28,520 OUT OR TRYING TO FIND THEIR WAY 2154 01:34:28,520 --> 01:34:30,280 SHOULD MAKE SURE THEY DO? 2155 01:34:30,280 --> 01:34:32,080 TO TRY TO FIND THE RIGHT PARTNER 2156 01:34:32,080 --> 01:34:33,920 AND WHAT DOES THE RIGHT FIT LOCK 2157 01:34:33,920 --> 01:34:34,680 LIKE? 2158 01:34:34,680 --> 01:34:37,240 FROM YOUR PERSPECTIVE? 2159 01:34:37,240 --> 01:34:38,800 >> YEAH, I DON'T KNOW I'M AN 2160 01:34:38,800 --> 01:34:40,120 EXPERT ON THE RIGHT FIT. 2161 01:34:40,120 --> 01:34:45,080 YOU KNOW, IN TERM OF WHAT 2162 01:34:45,080 --> 01:34:45,760 ORGANIZATIONS PATIENT 2163 01:34:45,760 --> 01:34:47,560 COMMUNITIES SHOULD BE LOOKING 2164 01:34:47,560 --> 01:34:50,080 FOR IN THE INDUCE THROW PARTNER 2165 01:34:50,080 --> 01:34:53,280 OF CHOICE OR MULTIPLE PARTNERS, 2166 01:34:53,280 --> 01:34:56,920 RIGHT, IS A, DO THEY REALLY 2167 01:34:56,920 --> 01:34:59,800 UNDERSTAND THE FOCUS OF THE 2168 01:34:59,800 --> 01:35:00,040 COMPANY? 2169 01:35:00,040 --> 01:35:02,200 IS IT BROAD TO RARE DISEASES? 2170 01:35:02,200 --> 01:35:04,240 IS IT SPECIFIC TO SERVING 2171 01:35:04,240 --> 01:35:04,800 THERAPEUTIC AREAS? 2172 01:35:04,800 --> 01:35:07,480 DO YOU REALLY UNDERSTAND, IS IT 2173 01:35:07,480 --> 01:35:10,560 EVEN SPECIFIC TO A PLATFORM OF 2174 01:35:10,560 --> 01:35:14,520 OUR PLATFORM TECHNOLOGY AND SO 2175 01:35:14,520 --> 01:35:15,440 DO YOU UNDERSTAND WHAT THE 2176 01:35:15,440 --> 01:35:16,880 COMPANY IS TRYING TO ACCOMPLISH 2177 01:35:16,880 --> 01:35:18,560 WITH REGARD TO ITS DISEASE AREAS 2178 01:35:18,560 --> 01:35:21,360 OF FOCUS AND IT'S OWN 2179 01:35:21,360 --> 01:35:24,280 CAPABILITIES AND MAYBE 2180 01:35:24,280 --> 01:35:25,840 UNDERSTANDING WHAT IS THE LIFE 2181 01:35:25,840 --> 01:35:26,360 CYCLE PROCESS? 2182 01:35:26,360 --> 01:35:29,280 IS IT TO ENABLE PRE CLINICAL 2183 01:35:29,280 --> 01:35:30,840 DEVELOPMENT AND BASIC RESEARCH 2184 01:35:30,840 --> 01:35:33,840 OR IS IT REALLY TO MOVE INTO THE 2185 01:35:33,840 --> 01:35:34,640 CLINIC, RIGHT? 2186 01:35:34,640 --> 01:35:36,640 IT COULD BE BOTH. 2187 01:35:36,640 --> 01:35:40,000 AND THEN SO DO YOU UNDERSTAND 2188 01:35:40,000 --> 01:35:41,720 WHO YOU ARE REACHING OUT TO AND 2189 01:35:41,720 --> 01:35:43,760 THEIR PRIORITIES AND THEIR 2190 01:35:43,760 --> 01:35:45,040 CAPABILITIES? 2191 01:35:45,040 --> 01:35:47,960 DO YOU UNDERSTAND THE DRUG 2192 01:35:47,960 --> 01:35:52,480 DEVELOPMENT PROCESS ITSELF? 2193 01:35:52,480 --> 01:35:53,880 AGAIN, THE BOT CAMP DO YOU HAVE 2194 01:35:53,880 --> 01:35:56,160 A REALLY GOOD UNDERSTANDING OF 2195 01:35:56,160 --> 01:35:59,600 WHAT IT TAKES TO GET TO GOAL AND 2196 01:35:59,600 --> 01:36:00,840 WHERE YOUR ORGANIZATION WANTS TO 2197 01:36:00,840 --> 01:36:02,160 FOCUS THEIR EFFORTS, RIGHT, 2198 01:36:02,160 --> 01:36:04,360 BECAUSE NONE OF US CAN DO 2199 01:36:04,360 --> 01:36:04,640 EVERYTHING. 2200 01:36:04,640 --> 01:36:07,560 SO IT'S REALLY, DO YOU HAVE, CAN 2201 01:36:07,560 --> 01:36:09,320 YOU FIND THAT MISSION MATCH, 2202 01:36:09,320 --> 01:36:12,080 RIGHT, AND THEN I THINK THE 2203 01:36:12,080 --> 01:36:13,680 CHALLENGE IS NAVIGATING THAT 2204 01:36:13,680 --> 01:36:14,880 ORGANIZATION THAT YOU ARE THEN 2205 01:36:14,880 --> 01:36:18,320 TRYING TO REACH OUT TO, RIGHT. 2206 01:36:18,320 --> 01:36:20,480 AND THAT CERTAINLY IS SOMETHING 2207 01:36:20,480 --> 01:36:22,120 THAT PFIZER HEARS A LOT OF, 2208 01:36:22,120 --> 01:36:22,520 RIGHT. 2209 01:36:22,520 --> 01:36:27,800 BECAUSE WE'RE SUCH A LARGE 2210 01:36:27,800 --> 01:36:28,920 COMPANY AND TRYING TO LOCK FOR 2211 01:36:28,920 --> 01:36:31,040 THOSE FOLKS WHO ARE FOCUSED ON 2212 01:36:31,040 --> 01:36:33,440 PATIENT ADVOCACY, WE'RE PROBABLY 2213 01:36:33,440 --> 01:36:36,200 BEING A GREAT PLACE TO START IN 2214 01:36:36,200 --> 01:36:39,680 TERMS OF THAT INITIAL CONTACT. 2215 01:36:39,680 --> 01:36:43,640 >> MAYBE I COULD SE EVEN ADD TO 2216 01:36:43,640 --> 01:36:43,840 THAT. 2217 01:36:43,840 --> 01:36:45,600 I WANTED TO GIVE THE PERSPECTIVE 2218 01:36:45,600 --> 01:36:48,840 FROM OUR FOUNDATION PERSPECTIVE, 2219 01:36:48,840 --> 01:36:50,840 WE DIDN'T -- WE WANTED AS MANY 2220 01:36:50,840 --> 01:36:52,280 PEOPLE AS POSSIBLE TO BE 2221 01:36:52,280 --> 01:36:54,120 INTERESTED IN OUR DISEASE AND SO 2222 01:36:54,120 --> 01:36:57,520 WE WERE REALLY QUITE AGNOSTIC TO 2223 01:36:57,520 --> 01:36:59,440 PRETTY MUCH ANY ASPECT OF THE 2224 01:36:59,440 --> 01:36:59,680 COMPANY. 2225 01:36:59,680 --> 01:37:02,360 I MEAN, WE WERE SUPER EXCITED 2226 01:37:02,360 --> 01:37:03,560 WITH COMPANIES THAT WERE LARGER 2227 01:37:03,560 --> 01:37:04,520 ESTABLISHED COMPANIES IN THE 2228 01:37:04,520 --> 01:37:06,840 SPACE AND TOOK A INTEREST IN FTD 2229 01:37:06,840 --> 01:37:09,880 BUT SMALL, GRAND NEW START UP 2230 01:37:09,880 --> 01:37:10,640 BIO TECHS THAT WERE INTERESTED 2231 01:37:10,640 --> 01:37:12,240 IN AND WE TRIED TO GIVE THEM 2232 01:37:12,240 --> 01:37:14,680 EQUAL ACCESS AND EQUAL 2233 01:37:14,680 --> 01:37:15,560 OPPORTUNITIES TO WHATEVER WE 2234 01:37:15,560 --> 01:37:17,280 COULD DO TO HELP THEM WAS OUR 2235 01:37:17,280 --> 01:37:19,640 MODEL BECAUSE WE DIDN'T KNOW WHO 2236 01:37:19,640 --> 01:37:21,960 MIGHT SUCCEED AND IN FACT, WE 2237 01:37:21,960 --> 01:37:22,880 HAD INTERESTING EXPERIENCES I 2238 01:37:22,880 --> 01:37:26,280 WOULD SAY OVER THE LAST 10 PLUS 2239 01:37:26,280 --> 01:37:29,800 YEARS WE'VE SPOKEN WITH 75 2240 01:37:29,800 --> 01:37:31,720 COMPANIES RANGING FROM ALL OVER 2241 01:37:31,720 --> 01:37:32,760 THE WORLD AND ALL KINDS OF 2242 01:37:32,760 --> 01:37:35,560 STAGES AND FUNDING LEVELS AND 2243 01:37:35,560 --> 01:37:36,840 SOMETIMES WE WOULD GIVE A 2244 01:37:36,840 --> 01:37:38,000 PRESENTATION AND THINK OH THAT'S 2245 01:37:38,000 --> 01:37:40,200 GOING TO GO NOWHERE AND THEN TWO 2246 01:37:40,200 --> 01:37:41,640 YEARS LATER THE COMPANY MIGHT 2247 01:37:41,640 --> 01:37:43,400 CIRCLE BACK AND SAY BY THE WAY, 2248 01:37:43,400 --> 01:37:49,280 HERE IS SOME DATA THAT WE HAVE 2249 01:37:49,280 --> 01:37:51,320 YOU JUST NEVER KNOW AND IN FACT 2250 01:37:51,320 --> 01:37:52,400 SOME OF THE COMPANIES, SOME 2251 01:37:52,400 --> 01:37:54,760 EARLY PLAYERS IN OUR SPACE 2252 01:37:54,760 --> 01:37:56,200 EVENTUALLY DROPPED OUT FOR A 2253 01:37:56,200 --> 01:37:58,160 VARIETY OF REASONS AND PLAYERS 2254 01:37:58,160 --> 01:38:00,520 WE DIDN'T KNOW HAD ACTIVE 2255 01:38:00,520 --> 01:38:01,280 PROGRAMS ARE FARTHER ALONG THAN 2256 01:38:01,280 --> 01:38:06,520 OTHERS SO I THINK THAT IN 2257 01:38:06,520 --> 01:38:08,120 HINDSIGHT IT'S OBVIOUSLY VERY 2258 01:38:08,120 --> 01:38:10,960 DEPENDENT ON THE RESOURCES AND 2259 01:38:10,960 --> 01:38:13,640 THE FOUNDATION BUT BECAUSE IT'S 2260 01:38:13,640 --> 01:38:15,400 SO UNPREDICTABLE WHO CAN GET A 2261 01:38:15,400 --> 01:38:22,840 DRUG INTO THE CLINIC, AND THEY 2262 01:38:22,840 --> 01:38:26,800 MIGHT COME YOUR WAY AS POSSIBLE. 2263 01:38:26,800 --> 01:38:37,320 >> AND IF ANYTHING COMES OUT OF 2264 01:38:37,920 --> 01:38:39,280 IT IMMEDIATELY YOU NEVER KNOW 2265 01:38:39,280 --> 01:38:47,600 WHAT HAPPENS IN THE FUTURE AND 2266 01:38:47,600 --> 01:38:49,120 IT'S GOOD FOR THEM TO KNOW ABOUT 2267 01:38:49,120 --> 01:38:51,240 YOU AND THE MORE RESOURCES THAT 2268 01:38:51,240 --> 01:38:54,640 YOU HAVE ABOUT YOUR SPECIFIC 2269 01:38:54,640 --> 01:38:56,440 DISORDER, THE BETTER EQUIPPED 2270 01:38:56,440 --> 01:38:58,160 YOU ARE TO HAVE THIS DIALOGUE 2271 01:38:58,160 --> 01:38:59,640 WITH A COMPANY AND TELL THEM WE 2272 01:38:59,640 --> 01:39:02,040 HAVE A REGISTRY AND A NATURAL 2273 01:39:02,040 --> 01:39:05,320 HISTORY STUDY . BANK, WHATEVER 2274 01:39:05,320 --> 01:39:06,680 YOU HAVE YOU KNOW THIS DISORDER 2275 01:39:06,680 --> 01:39:07,560 BETTER THAN ANYONE ELSE. 2276 01:39:07,560 --> 01:39:11,760 YOU ARE THE ONE THAT MIGHT 2277 01:39:11,760 --> 01:39:13,720 TRIGGER STARTING A PROGRAM IN 2278 01:39:13,720 --> 01:39:14,320 THIS COMPANY. 2279 01:39:14,320 --> 01:39:18,360 DO IT EARLY AND DO IT AS MANY 2280 01:39:18,360 --> 01:39:20,640 TIMES AS YOU CAN. 2281 01:39:20,640 --> 01:39:22,880 BIO MEETINGS, THE BIGGEST 2282 01:39:22,880 --> 01:39:24,360 PARTNERING MEETING FOR IN DOES 2283 01:39:24,360 --> 01:39:24,560 TREE. 2284 01:39:24,560 --> 01:39:26,320 IN THE PAST WE HARDLY SAW 2285 01:39:26,320 --> 01:39:27,840 PATIENT GROUPS AND THE LAST BIO 2286 01:39:27,840 --> 01:39:30,000 THERE WERE SO MANY PATIENT 2287 01:39:30,000 --> 01:39:31,400 GROUPS REQUESTING MEETINGS WITH 2288 01:39:31,400 --> 01:39:33,440 COMPANIES, IT'S AMAZING TO SEE 2289 01:39:33,440 --> 01:39:36,560 HOW MUCH ACTIVITIES THERE IS AND 2290 01:39:36,560 --> 01:39:38,280 HOPEFULLY THESE INTERACTIONS 2291 01:39:38,280 --> 01:39:39,920 WILL GENERATE AN ENERGY THAT 2292 01:39:39,920 --> 01:39:41,320 WILL START A PROGRAM AND HELP 2293 01:39:41,320 --> 01:39:46,040 SOMEONE START A PROGRAM SO DO IT 2294 01:39:46,040 --> 01:39:46,360 DEFINITELY. 2295 01:39:46,360 --> 01:39:46,880 >> THAT'S GREAT. 2296 01:39:46,880 --> 01:39:49,640 CAN YOU TALK ABOUT GROUPS AND WE 2297 01:39:49,640 --> 01:39:59,840 HAVE OUR SPECIFIC INTERESTS AND 2298 01:39:59,840 --> 01:40:04,880 WE THE ALIGNMENT HAS TO BE 2299 01:40:04,880 --> 01:40:06,880 BETWEEN A PATIENT GROUP AND A 2300 01:40:06,880 --> 01:40:09,080 GOAL WHICH IS CURE MY DISEASE AS 2301 01:40:09,080 --> 01:40:11,920 SOON AS POSSIBLE, RIGHT. 2302 01:40:11,920 --> 01:40:13,800 AND USUALLY YOU WORK WITH AN 2303 01:40:13,800 --> 01:40:15,800 ACADEMIC WHO NEEDS TO PUBLISH 2304 01:40:15,800 --> 01:40:20,560 AND GET GRANT MONEY AND TUN 2305 01:40:20,560 --> 01:40:26,120 YOU'RE ATENUREAT THE UNIVERSITYD 2306 01:40:26,120 --> 01:40:27,400 THEY NEED TO BE SUCCESSFUL AND 2307 01:40:27,400 --> 01:40:28,360 GENERATE REVENUE. 2308 01:40:28,360 --> 01:40:31,440 IT DOESN'T ALWAYS ALIGN. 2309 01:40:31,440 --> 01:40:34,080 MY RECOMMENDATIONS TO PATIENT 2310 01:40:34,080 --> 01:40:35,880 GROUPS THAT ARE WORKING WITH 2311 01:40:35,880 --> 01:40:37,040 ACADEMICS AND I KNOW THERE'S A 2312 01:40:37,040 --> 01:40:38,680 SESSION ABOUT WORKING WITH 2313 01:40:38,680 --> 01:40:40,960 ACADEMICS LATER SO I WON'T SPEND 2314 01:40:40,960 --> 01:40:43,280 TOO MUCH TIME AND GOING TO 2315 01:40:43,280 --> 01:40:44,320 PHARMA AND UNDERSTANDING THE 2316 01:40:44,320 --> 01:40:46,280 GOALS DON'T ALWAYS ALIGN BUT 2317 01:40:46,280 --> 01:40:50,120 THERE CAN BE ALIGNMENT IF 2318 01:40:50,120 --> 01:40:51,520 THERE'S VALUE BROUGHT IN BY THE 2319 01:40:51,520 --> 01:40:52,880 PATIENT GROUP OR BY THE 2320 01:40:52,880 --> 01:40:54,840 FOUNDATION THAT HAS ALL THE 2321 01:40:54,840 --> 01:40:56,360 INFORMATION THAT COULD HELP 2322 01:40:56,360 --> 01:41:01,320 ACCELERATE A PROGRAM OR WORKING 2323 01:41:01,320 --> 01:41:03,800 PARALLEL TO THE PRE CLINICAL OR 2324 01:41:03,800 --> 01:41:05,240 CLINICAL DEVELOPMENTS SO THIS 2325 01:41:05,240 --> 01:41:07,680 THINGS CAN BE EXPEDITED AND NOT 2326 01:41:07,680 --> 01:41:10,200 TROY TO DO IT STEP WISE ONE 2327 01:41:10,200 --> 01:41:12,480 AFTER THE OTHER BUT WORK 2328 01:41:12,480 --> 01:41:17,440 PARALLEL ON MANY THINGS. 2329 01:41:17,440 --> 01:41:20,920 ALSO, INTRODUCE THE COMPANIES TO 2330 01:41:20,920 --> 01:41:23,120 YOU AND YOUR FAMILY AND YOUR 2331 01:41:23,120 --> 01:41:23,320 STORY. 2332 01:41:23,320 --> 01:41:24,760 A LOT OF TIMES IT SWITCHES 2333 01:41:24,760 --> 01:41:26,400 SOMETHING IN THE BRAIN OF PERSON 2334 01:41:26,400 --> 01:41:27,760 THAT YOU ARE YOU CANNING TO AND 2335 01:41:27,760 --> 01:41:30,720 ALL OF A SUDDEN THEY UNDERSTAND 2336 01:41:30,720 --> 01:41:34,640 WHY THERE'S A SENSE OF URGENCY. 2337 01:41:34,640 --> 01:41:36,080 ON MY PH.D I WORKED ON DOWN 2338 01:41:36,080 --> 01:41:37,760 SYNDROME AND THE FIRST YEAR AND 2339 01:41:37,760 --> 01:41:40,800 THE LAB I'VE NEVER MET A FAMILY 2340 01:41:40,800 --> 01:41:42,040 THAT HAD A CHILD EFFECTED BY 2341 01:41:42,040 --> 01:41:44,080 DOWN SYNDROME AND NEVER MET A 2342 01:41:44,080 --> 01:41:45,400 PATIENT WITH DOWN SYNDROME AND 2343 01:41:45,400 --> 01:41:48,440 THE MOMENT IT HAPPENS, MY 2344 01:41:48,440 --> 01:41:49,720 PERSPECTIVE COMPLETELY CHANGED 2345 01:41:49,720 --> 01:41:52,840 AND A LOT OF TIMES, PEOPLE DON'T 2346 01:41:52,840 --> 01:41:58,040 KNOW AND HAVEN'T BEEN ABLE TO 2347 01:41:58,040 --> 01:41:59,840 GET THIS EXPOSURE SO HELP THEM 2348 01:41:59,840 --> 01:42:06,800 GET THAT EXPOSURE. 2349 01:42:06,800 --> 01:42:08,200 >> THAT'S REALLY IMPORTANT. 2350 01:42:08,200 --> 01:42:12,280 WHEN WE TALK ABOUT I.P. AND 2351 01:42:12,280 --> 01:42:14,960 LAURA, CAN YOU SHARE WITH US HOW 2352 01:42:14,960 --> 01:42:17,040 BLUE FIELD HAS DEALT WITH THE IP 2353 01:42:17,040 --> 01:42:21,480 ISSUES TO GET WORK ON THE FTD? 2354 01:42:21,480 --> 01:42:23,080 >> SO I THINK OUR FOUNDATION 2355 01:42:23,080 --> 01:42:24,920 FROM THE START, DECIDED THAT WE 2356 01:42:24,920 --> 01:42:27,520 WEREN'T GOING TO FUND PROGRAMS 2357 01:42:27,520 --> 01:42:28,920 WITHIN INDUSTRY AND SO THAT 2358 01:42:28,920 --> 01:42:30,480 MAKES IT A LOT EASIER IN THE 2359 01:42:30,480 --> 01:42:33,040 SENSE THAT YOU DON'T NEED TO 2360 01:42:33,040 --> 01:42:35,320 NEGOTIATE MORE COMPLICATED 2361 01:42:35,320 --> 01:42:36,720 CONTRACTS SO JUST THAT'S THE 2362 01:42:36,720 --> 01:42:38,600 STARTING POINT SO THEN WHAT WE 2363 01:42:38,600 --> 01:42:40,840 DID DO WAS WE FUNDED ACADEMIC 2364 01:42:40,840 --> 01:42:42,400 RESEARCH AND ESPECIALLY BECAUSE 2365 01:42:42,400 --> 01:42:44,160 WHEN OUR FOUNDATION WAS FOUNDED 2366 01:42:44,160 --> 01:42:45,600 THERE WAS LITTLE KNOWN ABOUT OUR 2367 01:42:45,600 --> 01:42:48,240 DISEASE OR THE MECHANISM OF WHY 2368 01:42:48,240 --> 01:42:53,680 MUTATIONS CAUSE FTD AND WHEN THE 2369 01:42:53,680 --> 01:42:55,560 ACADEMICS WERE SUCCESSFUL IN 2370 01:42:55,560 --> 01:42:57,320 CREATING TOOLS AS THEY DID THAT, 2371 01:42:57,320 --> 01:42:59,040 WHAT WE DECIDED TO DO WAS TROY 2372 01:42:59,040 --> 01:43:02,920 TO LOWER THE BARRIER TO GET 2373 01:43:02,920 --> 01:43:03,920 THOSE TOOLS INTO COMPANIES FOR 2374 01:43:03,920 --> 01:43:05,160 ANY COMPANY THAT MIGHT BE 2375 01:43:05,160 --> 01:43:08,640 INTERESTED IN WORKING ON FTD AND 2376 01:43:08,640 --> 01:43:11,000 SO, WE LICENSED SOME OF THE 2377 01:43:11,000 --> 01:43:13,400 TOOLS IN PARTICULAR MOUSE MODEL 2378 01:43:13,400 --> 01:43:15,640 AND PATIENT DERIVED CELL LINES 2379 01:43:15,640 --> 01:43:17,400 FROM DIFFERENT ACADEMIC 2380 01:43:17,400 --> 01:43:18,360 INSTITUTIONS WHERE INVESTIGATORS 2381 01:43:18,360 --> 01:43:20,400 HAD CREATED AND WORKED ON THEM 2382 01:43:20,400 --> 01:43:26,200 AND THEN WE HAD THE A LOT ABILIO 2383 01:43:26,200 --> 01:43:27,880 GET THEM IN THE HANDS OF 2384 01:43:27,880 --> 01:43:29,280 INTERESTED COMPANIES FOR EXPLORE 2385 01:43:29,280 --> 01:43:30,800 TORI RESEARCH AS QUICKLY AS 2386 01:43:30,800 --> 01:43:32,560 POSSIBLE BECAUSE OFTEN TIMES, 2387 01:43:32,560 --> 01:43:38,120 ACADEMIC INTERESTS, THEY MUST BE 2388 01:43:38,120 --> 01:43:39,760 BOGGED DOWN AND IN THIS WAY, WE 2389 01:43:39,760 --> 01:43:41,160 CAN HAVE A MASTER AGREEMENT THAT 2390 01:43:41,160 --> 01:43:42,560 WE CAN CONTROL THE PROCESS OF 2391 01:43:42,560 --> 01:43:44,720 SENDING OUT THE REAGENTS VERY 2392 01:43:44,720 --> 01:43:46,480 QUICKLY AND MAKE IT AS 2393 01:43:46,480 --> 01:43:47,800 STREAMLINE AS POSSIBLE AND ITS 2394 01:43:47,800 --> 01:43:49,200 DO THINK THAT HELPED. 2395 01:43:49,200 --> 01:43:50,240 IF COMPANIES HAD INITIAL 2396 01:43:50,240 --> 01:43:51,440 INTEREST AND THEY THOUGHT, MAYBE 2397 01:43:51,440 --> 01:43:56,360 I WOULD LIKE TO TROY AN IDEA OR 2398 01:43:56,360 --> 01:44:02,960 HYPOTHESIS, SO VERY, VERY EX MOR 2399 01:44:02,960 --> 01:44:04,040 EXPLORATORY RESEARCH AND IT 2400 01:44:04,040 --> 01:44:05,760 MIGHT JUMP START A PROGRAM SO WE 2401 01:44:05,760 --> 01:44:06,920 FELT THAT TIME WAS OF THE 2402 01:44:06,920 --> 01:44:08,280 ESSENCE AND THE WAY WE CAN DO 2403 01:44:08,280 --> 01:44:12,280 THAT WAS TO OFFER THIS SUB 2404 01:44:12,280 --> 01:44:12,880 LICENSING OPPORTUNITIES. 2405 01:44:12,880 --> 01:44:14,640 >> GREAT. 2406 01:44:14,640 --> 01:44:14,920 CATHERINE. 2407 01:44:14,920 --> 01:44:17,360 >> THAT'S BRILLIANT. 2408 01:44:17,360 --> 01:44:23,480 RIGHT, BECAUSE I CAN'T SPEAK IN 2409 01:44:23,480 --> 01:44:25,280 DETAIL AROUND THE COMPLEXITIES 2410 01:44:25,280 --> 01:44:28,480 OF IT BUT I DO KNOW THAT WHEN WE 2411 01:44:28,480 --> 01:44:32,080 TRY TO OPERATIONALIZE 2412 01:44:32,080 --> 01:44:33,280 COLLABORATIONS, THROUGH 2413 01:44:33,280 --> 01:44:35,480 CONTRACTING, WHETHER IT'S WITH 2414 01:44:35,480 --> 01:44:41,040 AN EPIDEMIC OR ADVOCACY GROUP, 2415 01:44:41,040 --> 01:44:42,920 THE ISSUES BECOME VERY, VERY 2416 01:44:42,920 --> 01:44:45,560 COMPLEX AND VERY FAST AND IT 2417 01:44:45,560 --> 01:44:51,280 DOES SLOW DOWN THE PR PROCESS TT 2418 01:44:51,280 --> 01:44:53,520 IDENTIFY AND ALIGN AGAINST A 2419 01:44:53,520 --> 01:44:56,040 SHARED SENSE OF URGENCY AND IT 2420 01:44:56,040 --> 01:44:58,840 BREAKS DOWN WHEN YOU TRY AND 2421 01:44:58,840 --> 01:45:01,280 EXECUTE THESE CONTRACTS BECAUSE 2422 01:45:01,280 --> 01:45:05,840 YOU HAVE VERY BUSY ACADEMIC 2423 01:45:05,840 --> 01:45:07,520 INSTITUTIONS AND YOU HAVE YOUR 2424 01:45:07,520 --> 01:45:10,920 LEGAL PARTNERS AT A COMPANY THAT 2425 01:45:10,920 --> 01:45:14,240 ARE REALLY WANTING THAT FREEDOM 2426 01:45:14,240 --> 01:45:17,760 TO OPERATE AND CLARITY. 2427 01:45:17,760 --> 01:45:20,960 >> MAYBE I CAN JUST CLARIFY, OUR 2428 01:45:20,960 --> 01:45:22,560 ABILITY TO SUB LICENSE WAS 2429 01:45:22,560 --> 01:45:25,200 REALLY FOR EXPLORATORY RESEARCH. 2430 01:45:25,200 --> 01:45:32,320 IF A COMPANY PERSUADE A PURSUE M 2431 01:45:32,320 --> 01:45:34,080 THEY NEED TO GET A COMMERCIAL 2432 01:45:34,080 --> 01:45:34,520 LICENSE. 2433 01:45:34,520 --> 01:45:36,800 WE REALLY JUST WANTED TO 2434 01:45:36,800 --> 01:45:38,320 INCENTIVIZE THAT FIRST STEP. 2435 01:45:38,320 --> 01:45:39,720 LET'S GET A HOOK INTO THE 2436 01:45:39,720 --> 01:45:40,920 COMPANY TO GET THEM INTERESTED 2437 01:45:40,920 --> 01:45:42,680 ON THAT PROGRAM AND THEN IF IT 2438 01:45:42,680 --> 01:45:44,240 GOES FORWARD, THEN THEY WILL 2439 01:45:44,240 --> 01:45:46,920 STILL HAVE TO DO THE COMMERCIAL 2440 01:45:46,920 --> 01:45:48,560 NEGOTIATIONS BUT LET'S GET THEM 2441 01:45:48,560 --> 01:45:50,320 A LITTLE BIT INTERESTED BEFORE 2442 01:45:50,320 --> 01:45:52,800 TO SEE WHETHER OR NOT IT'S WORTH 2443 01:45:52,800 --> 01:45:53,480 THEIR TIME. 2444 01:45:53,480 --> 01:45:56,480 >> I DO HEAR FROM SOME 2445 01:45:56,480 --> 01:45:57,760 FOUNDATIONS THAT THEY ARE NOT 2446 01:45:57,760 --> 01:45:59,880 GOING TO BOTHER WITH FILING I.P. 2447 01:45:59,880 --> 01:46:01,920 OR BOTHERING WITH I.P. BECAUSE 2448 01:46:01,920 --> 01:46:07,240 IT'S SUCH A DISTRACTION AND I 2449 01:46:07,240 --> 01:46:08,560 THINK IF YOU UNDERSTAND HOW 2450 01:46:08,560 --> 01:46:10,640 VALUABLE THIS INTELLECTUAL 2451 01:46:10,640 --> 01:46:12,080 PROPERTY IS IF YOU WANT TO 2452 01:46:12,080 --> 01:46:14,280 PARTNER WITH A COMPANY THAT WILL 2453 01:46:14,280 --> 01:46:15,000 LATER COMMERCIALIZE IT, IT'S 2454 01:46:15,000 --> 01:46:17,040 VERY IMPORTANT FOR THE PARTNER. 2455 01:46:17,040 --> 01:46:18,520 SO YOU MAY NOT THINK IT'S 2456 01:46:18,520 --> 01:46:20,520 IMPORTANT FOR YOU AND IT COST 2457 01:46:20,520 --> 01:46:26,240 MONEY TO FILE IP AND TO MAINTAIN 2458 01:46:26,240 --> 01:46:27,640 IT, IT IS IMPORTANT IF YOU 2459 01:46:27,640 --> 01:46:28,960 PARTNER WITH A COMPANY THAT 2460 01:46:28,960 --> 01:46:30,560 WANTS IT GENERATE REVENUE AND 2461 01:46:30,560 --> 01:46:31,880 HAVE AN ADVANTAGE WITH IT GETS 2462 01:46:31,880 --> 01:46:33,280 TO THE MARKET WITH A PRODUCT 2463 01:46:33,280 --> 01:46:35,200 THAT'S VERY IMPORTANT TO HAVE 2464 01:46:35,200 --> 01:46:37,200 I.P. SO DON'T UNDERESTIMATE THE 2465 01:46:37,200 --> 01:46:39,240 VALUE OF IT AND FOR PATIENT 2466 01:46:39,240 --> 01:46:41,120 GROUPS THAT ARE WORKING WITH 2467 01:46:41,120 --> 01:46:42,760 ACADEMICS AND FUNDING RESEARCH, 2468 01:46:42,760 --> 01:46:46,120 IT'S VERY IMPORTANT THAT YOU GET 2469 01:46:46,120 --> 01:46:47,960 ACCESS TO THAT I.P. THAT IS 2470 01:46:47,960 --> 01:46:53,920 FILED BASED ON THE MONEY THAT 2471 01:46:53,920 --> 01:46:57,960 YOU FUNDED THE PROGRAM WITH AND 2472 01:46:57,960 --> 01:46:59,960 LICENSE THIS I.P. WHEN THE 2473 01:46:59,960 --> 01:47:02,840 RESEARCH IS DONE AND THE RESULTS 2474 01:47:02,840 --> 01:47:04,560 LOOK PROMISING BECAUSE IF YOU 2475 01:47:04,560 --> 01:47:07,200 FUNDED IT, YOU DESERVE TO 2476 01:47:07,200 --> 01:47:09,840 CONTROL IT EVER AT RESEARCH IS 2477 01:47:09,840 --> 01:47:10,040 DONE. 2478 01:47:10,040 --> 01:47:12,320 >> YEAH, I'M ASSUMING THIS I.P. 2479 01:47:12,320 --> 01:47:13,880 SECTION WILL BE DISCUSSED THERE 2480 01:47:13,880 --> 01:47:15,560 AS PART OF THE BOOTCAMP. 2481 01:47:15,560 --> 01:47:16,960 >> OH, YEAH. 2482 01:47:16,960 --> 01:47:18,640 WE STUDY HALF A DAY ON THE 2483 01:47:18,640 --> 01:47:21,080 BUSINESS OF SCIENCE WHICH IS 2484 01:47:21,080 --> 01:47:22,400 INTELLECTUAL PROPERTY AND 2485 01:47:22,400 --> 01:47:23,840 NEGOTIATING LICENSES WITH THE 2486 01:47:23,840 --> 01:47:24,880 UNIVERSITIES AND WHAT CAN YOU 2487 01:47:24,880 --> 01:47:28,520 ASK FOR AND HOW TO STRUCTURE AND 2488 01:47:28,520 --> 01:47:29,960 WE'VE SEEN SEVERAL GROUPS THAT 2489 01:47:29,960 --> 01:47:32,560 FUNDED RESEARCH WITHOUT GETTING 2490 01:47:32,560 --> 01:47:34,320 ACCESS TO THE RESULTS OF THE 2491 01:47:34,320 --> 01:47:36,400 RESEARCH AND THE FRUIT THAT CAME 2492 01:47:36,400 --> 01:47:38,480 OUT THE RESEARCH AND IT WAS 2493 01:47:38,480 --> 01:47:40,600 FRUSTRATING TO THEM. 2494 01:47:40,600 --> 01:47:41,800 >> OH MY GOSH. 2495 01:47:41,800 --> 01:47:44,400 THAT'S A GOOD SEG WAY TO MY NEXT 2496 01:47:44,400 --> 01:47:46,920 QUESTION WHICH IS YOU GUYS HAVE 2497 01:47:46,920 --> 01:47:49,720 BEEN IN THIS SPACE AND THE 2498 01:47:49,720 --> 01:47:51,240 SCIENCE WIELD FIELD FOR A LONG 2499 01:47:51,240 --> 01:47:51,640 TIME. 2500 01:47:51,640 --> 01:47:52,680 YOUR WHOLE CAREERS. 2501 01:47:52,680 --> 01:47:54,520 I WANT INFORMED ASK YOU, YOU 2502 01:47:54,520 --> 01:47:57,040 KNOW, IF YOU COULD THINK OF SOME 2503 01:47:57,040 --> 01:48:00,360 CASES WHERE THE RELATIONSHIPS 2504 01:48:00,360 --> 01:48:03,200 HAVE WORKED REALLY WELL BETWEEN 2505 01:48:03,200 --> 01:48:04,560 PATIENTS GROUP AND INDUSTRY. 2506 01:48:04,560 --> 01:48:06,240 NO NAMES BUT WHAT ARE SOME CASES 2507 01:48:06,240 --> 01:48:10,960 THAT YOU MIGHT CITE AS SORT OF 2508 01:48:10,960 --> 01:48:12,800 MODELS FOR GOOD RELATIONSHIPS IN 2509 01:48:12,800 --> 01:48:13,320 PARTNERSHIPS? 2510 01:48:13,320 --> 01:48:14,920 >> I HAVE A GREAT EXAMPLE 2511 01:48:14,920 --> 01:48:16,800 BECAUSE A PRESS RELEASE JUST 2512 01:48:16,800 --> 01:48:19,280 CAME OUT YESTERDAY AND THAT IS A 2513 01:48:19,280 --> 01:48:22,120 RELATIONSHIP BETWEEN 2514 01:48:22,120 --> 01:48:23,160 ULTRA-GENICS AND THE ANGLE 2515 01:48:23,160 --> 01:48:26,000 FOUNDATION AND THE COMPANY THE 2516 01:48:26,000 --> 01:48:27,080 FOUNDATION SPUN OUT AND IT'S A 2517 01:48:27,080 --> 01:48:31,400 RELATIONSHIP THAT STARTED OVER W 2518 01:48:31,400 --> 01:48:35,760 YEARS AGO ULTRA-GENICS SUPPORTED 2519 01:48:35,760 --> 01:48:39,640 THE GENETICS, THE COMPANY SPUN 2520 01:48:39,640 --> 01:48:43,120 OUT OF THE FOUNDATION AND 2521 01:48:43,120 --> 01:48:44,320 ULTRA-GENICS ENTERED A 2522 01:48:44,320 --> 01:48:46,000 COLLABORATION FOR GENETICS AND 2523 01:48:46,000 --> 01:48:47,920 FUNDED SOME OF THE RESEARCH THAT 2524 01:48:47,920 --> 01:48:49,720 THEY DID AND TOOK IT INTO THE 2525 01:48:49,720 --> 01:48:52,280 CLINIC WITH AN OPTION TO ACQUIRE 2526 01:48:52,280 --> 01:48:53,840 THE COMPANY AND THEY ENDED UP 2527 01:48:53,840 --> 01:48:55,160 YESTERDAY ANNOUNCING THAT THE 2528 01:48:55,160 --> 01:48:57,160 COMPANY WAS ACQUIRED SO IT TOOK 2529 01:48:57,160 --> 01:49:04,480 TIME AND IT WAS A VERY 2530 01:49:04,480 --> 01:49:05,480 INTERESTING COLLABORATION FROM 2531 01:49:05,480 --> 01:49:06,760 WHEN WE SIGNED THE AGREEMENT AND 2532 01:49:06,760 --> 01:49:09,000 THE ACQUISITION OF THE COMPANY. 2533 01:49:09,000 --> 01:49:11,200 IT WAS A VERY PROLIFIC 2534 01:49:11,200 --> 01:49:14,040 RELATIONSHIP AND ENDED WITH 2535 01:49:14,040 --> 01:49:15,560 HOPEFULLY WITH A THERAPY IN THE 2536 01:49:15,560 --> 01:49:18,160 CLINIC AND WE'LL GET TO MANY 2537 01:49:18,160 --> 01:49:20,560 PATIENTS SO I THINK THE LEARNING 2538 01:49:20,560 --> 01:49:23,240 FROM IT AND NOT THAT I RECOMMEND 2539 01:49:23,240 --> 01:49:25,280 EVERY FOUNDATION TO SPIN OUT 2540 01:49:25,280 --> 01:49:26,680 COMPANIES AND NOT EVERY 2541 01:49:26,680 --> 01:49:28,800 FOUNDATION CAN DO IT, YOU NEED 2542 01:49:28,800 --> 01:49:30,080 RESOURCES FOR IT BUT IT GOES 2543 01:49:30,080 --> 01:49:32,840 BACK TO WHAT I SAID BEFORE, 2544 01:49:32,840 --> 01:49:36,080 ENGAGE EARLY WITH A PHARMA 2545 01:49:36,080 --> 01:49:37,560 PARTNER AND GET AS MUCH 2546 01:49:37,560 --> 01:49:43,280 INFORMATION AS YOU CAN AND TRY 2547 01:49:43,280 --> 01:49:45,160 TO GET THEM TO HELP WITH 2548 01:49:45,160 --> 01:49:47,280 EXPERTISE, EVEN IF THEY'RE NOT 2549 01:49:47,280 --> 01:49:49,360 INVESTING MONEY, SOMEONE YOU CAN 2550 01:49:49,360 --> 01:49:50,880 TAP INTO AND ASK QUESTIONS AND 2551 01:49:50,880 --> 01:49:52,200 MAKE THEM AWARE OF YOUR PROGRAM 2552 01:49:52,200 --> 01:49:53,520 AND GET THEM TO LIKE THE PROGRAM 2553 01:49:53,520 --> 01:49:56,560 AND EVENTUALLY IT MIGHT END WITH 2554 01:49:56,560 --> 01:49:58,440 A GREAT BUSINESS RELATIONSHIP AS 2555 01:49:58,440 --> 01:49:58,640 WELL. 2556 01:49:58,640 --> 01:50:01,320 >> AND THAT DISEASE IS 2557 01:50:01,320 --> 01:50:02,160 ULTRARARE, RIGHT. 2558 01:50:02,160 --> 01:50:02,640 LIKE WHAT IS? 2559 01:50:02,640 --> 01:50:04,440 >> THERE ARE A FEW THOUSAND 2560 01:50:04,440 --> 01:50:09,040 PATIENTS IN THE WORLD AT THE 2561 01:50:09,040 --> 01:50:09,280 MOMENT. 2562 01:50:09,280 --> 01:50:10,680 >> HOW LONG DID IT TAKE TO GET 2563 01:50:10,680 --> 01:50:15,800 FROM STARTING A BUSINESS TO THE 2564 01:50:15,800 --> 01:50:16,400 ACQUISITION? 2565 01:50:16,400 --> 01:50:19,200 >> SO THEY STARTED THE COMPANY 2566 01:50:19,200 --> 01:50:21,080 IN 2019 OR 2018. 2567 01:50:21,080 --> 01:50:21,760 AFTER THEY SHOPPED IT AROUND 2568 01:50:21,760 --> 01:50:23,240 WITH MANY IN THE STREET AND 2569 01:50:23,240 --> 01:50:24,160 PARTNERS AND THERE WAS AN 2570 01:50:24,160 --> 01:50:25,560 INTEREST AT THE TIME BECAUSE 2571 01:50:25,560 --> 01:50:28,240 THEY HAD VERY LOW DATA SO THEY 2572 01:50:28,240 --> 01:50:29,800 DECIDED TO CONTINUE FUNDING THE 2573 01:50:29,800 --> 01:50:33,160 PROGRAM AND THEY GOT A FULL AND 2574 01:50:33,160 --> 01:50:40,720 VERY COM ROW HENCE I HAVE PROOFD 2575 01:50:40,720 --> 01:50:42,880 SO THEY DECIDED TO LOOK FIRE 2576 01:50:42,880 --> 01:50:44,680 PARTNER AS WELL AND THEY 2577 01:50:44,680 --> 01:50:45,960 ACTUALLY WERE LOOKING FOR 2578 01:50:45,960 --> 01:50:48,320 VENTURE FUNDING OR A PARTNER AND 2579 01:50:48,320 --> 01:50:49,720 WE MET WITH THEM AND WE LIKED 2580 01:50:49,720 --> 01:50:51,120 THE PROGRAM AND WHAT WAS 2581 01:50:51,120 --> 01:50:52,880 PRESENTED TO US AND DECIDED TO 2582 01:50:52,880 --> 01:50:58,480 ENGAGE IN THIS COL A COLLABORAT. 2583 01:50:58,480 --> 01:51:01,480 THEY START INSIDE 2017 AND WE 2584 01:51:01,480 --> 01:51:02,640 STARTED THE RELATIONSHIP WITH 2585 01:51:02,640 --> 01:51:04,640 THEM IN 2019 AND THREE YEARS 2586 01:51:04,640 --> 01:51:06,840 LATER THE COMPANY WAS ACQUIRED. 2587 01:51:06,840 --> 01:51:11,560 >> AMAZING. 2588 01:51:11,560 --> 01:51:11,800 AMAZING. 2589 01:51:11,800 --> 01:51:13,080 ANY OTHER SUCCESS STORIES YOU 2590 01:51:13,080 --> 01:51:15,680 CAN THINK OF? 2591 01:51:15,680 --> 01:51:17,640 >> I'M HAPPY SHARE AN EXPERIENCE 2592 01:51:17,640 --> 01:51:21,880 BECAUSE I THINK IT MIGHT BE A 2593 01:51:21,880 --> 01:51:22,800 DIFFERENT APPROACH TO 2594 01:51:22,800 --> 01:51:25,800 CONSIDERING WHAT SUCCESS LOOKS 2595 01:51:25,800 --> 01:51:26,640 LIKE, RIGHT. 2596 01:51:26,640 --> 01:51:29,040 TO THE COMMENTS OF MY PANEL 2597 01:51:29,040 --> 01:51:31,520 COLLEAGUES EARLIER, I THINK OUR 2598 01:51:31,520 --> 01:51:32,960 GOAL WHERE I SIT IN MY 2599 01:51:32,960 --> 01:51:34,720 ORGANIZATION IS REALLY FOCUSES 2600 01:51:34,720 --> 01:51:36,600 ON THAT DISCOVERY PIECE AND 2601 01:51:36,600 --> 01:51:39,040 CONCEPTS SO OUR MODEL IS TO 2602 01:51:39,040 --> 01:51:42,840 ENGAGE VERY EARLY ON TO CO 2603 01:51:42,840 --> 01:51:45,080 CREATE THE RESEARCH QUESTIONS, 2604 01:51:45,080 --> 01:51:47,440 RIGHT, BACK WHERE ADVANCED 2605 01:51:47,440 --> 01:51:51,360 HOPEFUL LOW THERAPEUTIC 2606 01:51:51,360 --> 01:51:52,720 DEVELOPMENT AND I THINK THE CON 2607 01:51:52,720 --> 01:51:54,600 SEX OF WORKING WITH A PARTICULAR 2608 01:51:54,600 --> 01:51:56,360 PATIENT SAD ROW KA SEE GROUP WAS 2609 01:51:56,360 --> 01:52:01,880 REALLY FOCUSED ON A SPECIFIC 2610 01:52:01,880 --> 01:52:06,480 RESEARCH QUESTION WITH A DEFINED 2611 01:52:06,480 --> 01:52:08,000 OUTCOME THAT COULD TIE TO A 2612 01:52:08,000 --> 01:52:09,000 DECISION, RIGHT. 2613 01:52:09,000 --> 01:52:10,040 OBVIOUSLY YOU DON'T KNOW WHAT 2614 01:52:10,040 --> 01:52:11,600 THE OUTCOME IS GOING TO BE AT 2615 01:52:11,600 --> 01:52:13,120 THE BEGINNING BUT YOU KNOW 2616 01:52:13,120 --> 01:52:15,000 REGARDLESS OF OUTCOME YOU ARE IN 2617 01:52:15,000 --> 01:52:16,280 A POSITION TO MAKE A DECISION 2618 01:52:16,280 --> 01:52:19,280 AND THE PROJECT THAT WAS CO 2619 01:52:19,280 --> 01:52:23,360 FUNDED, YOU KNOW WAS A TARGET 2620 01:52:23,360 --> 01:52:26,400 IDENTIFICATION SCREENING AND FOR 2621 01:52:26,400 --> 01:52:29,960 THE ADVOCACY ASSOCIATION, THE 2622 01:52:29,960 --> 01:52:31,760 OUTCOME WOULD GIVE THEM 2623 01:52:31,760 --> 01:52:35,560 CONFIDENCE IN HOW THEY WERE 2624 01:52:35,560 --> 01:52:39,720 GRANT FUNDING GIVEN A PARTICULAR 2625 01:52:39,720 --> 01:52:41,520 MECHANISTIC APPROACH TO 2626 01:52:41,520 --> 01:52:42,600 ADDRESSING THEIR CONDITION. 2627 01:52:42,600 --> 01:52:47,440 FOR PFIZER, IT WAS YOU KNOW, DO 2628 01:52:47,440 --> 01:52:49,680 WE PURSUE THIS MECHANISTIC 2629 01:52:49,680 --> 01:52:50,560 APPROACH OR NOT? 2630 01:52:50,560 --> 01:52:52,560 AND SO THERE WAS CLARITY ON WHAT 2631 01:52:52,560 --> 01:52:56,320 WAS THE RESEARCH QUESTION AND 2632 01:52:56,320 --> 01:52:59,040 WHAT DECISIONS COULD ENTITIES 2633 01:52:59,040 --> 01:53:01,320 MAKE GIVEN THE OUTCOME AND I 2634 01:53:01,320 --> 01:53:04,520 THINK WE WEREN'T ABLE TO 2635 01:53:04,520 --> 01:53:06,560 IDENTIFY ANY HITS AND I THINK 2636 01:53:06,560 --> 01:53:08,240 THE CONCERN THERE WAS HOW IS 2637 01:53:08,240 --> 01:53:09,640 THIS GOING TO IMPACT THE 2638 01:53:09,640 --> 01:53:11,400 RELATIONSHIP BUT WE ALREADY 2639 01:53:11,400 --> 01:53:13,440 DISCUSSED THE POTENTIAL OUTCOMES 2640 01:53:13,440 --> 01:53:15,960 SO FOR THE ASSOCIATION, THEY 2641 01:53:15,960 --> 01:53:18,560 WERE VERY SATISFIED BECAUSE NOW 2642 01:53:18,560 --> 01:53:23,240 THEY KIND OF COULD STRATEGICALLY 2643 01:53:23,240 --> 01:53:26,240 REORIENT THEIR STRATEGY AROUND 2644 01:53:26,240 --> 01:53:28,920 GRANT FUNDING, RIGHT, AND PHASE 2645 01:53:28,920 --> 01:53:34,560 PFIZER HADCLARITY AND COULD REPE 2646 01:53:34,560 --> 01:53:35,960 SOME PROGRAMS FOR THAT 2647 01:53:35,960 --> 01:53:38,360 INDICATION AS WELL AND SO WAS IT 2648 01:53:38,360 --> 01:53:40,880 SUCCESSFUL IN FINDING A HIT, NO, 2649 01:53:40,880 --> 01:53:42,520 BUT IT WAS SUCCESSFUL IN 2650 01:53:42,520 --> 01:53:46,400 ANSWERING THE RESEARCH QUESTIONS 2651 01:53:46,400 --> 01:53:49,200 AND SUSTAINING THAT RELATIONSHIP 2652 01:53:49,200 --> 01:53:51,240 BECAUSE AGAIN YOU WERE IN THERE 2653 01:53:51,240 --> 01:53:53,840 ALIGNED WITH THE SHARED PURPOSE. 2654 01:53:53,840 --> 01:53:55,960 >> GREAT, LAURA, ANY STORIES YOU 2655 01:53:55,960 --> 01:53:56,680 CAN SHARE? 2656 01:53:56,680 --> 01:53:58,480 >> WELL, I GUESS JUST GENERALLY 2657 01:53:58,480 --> 01:54:00,680 I WOULD SAY THAT I THINK THERE 2658 01:54:00,680 --> 01:54:03,040 ARE THESE PRACTICAL -- THE 2659 01:54:03,040 --> 01:54:05,080 CONCEPT OF OUR NEED TO HAVE A 2660 01:54:05,080 --> 01:54:06,000 STRONG RELATIONSHIP WITH THE 2661 01:54:06,000 --> 01:54:07,560 COMPANIES IS SO PARAMOUNT AND 2662 01:54:07,560 --> 01:54:09,160 SOMETIMES IT CAN BE FRUSTRATING 2663 01:54:09,160 --> 01:54:11,240 WHEN IT DOESN'T WORKOUT AND I 2664 01:54:11,240 --> 01:54:12,400 THINK THAT THERE ARE SO MANY 2665 01:54:12,400 --> 01:54:13,960 DIFFERENT FACTORS AND INFLUENCES 2666 01:54:13,960 --> 01:54:16,080 FROM THE PRACTICAL SUCH AS HOW 2667 01:54:16,080 --> 01:54:18,600 MANY PATIENTS HAVE THIS DISORDER 2668 01:54:18,600 --> 01:54:20,360 AND HOW MUCH MONEY MIGHT HAVE 2669 01:54:20,360 --> 01:54:22,400 FOUNDATION CONTRIBUTE AND TO 2670 01:54:22,400 --> 01:54:26,160 REALLY THESE INTANGIBLES LIKE 2671 01:54:26,160 --> 01:54:26,840 INTERPERSONAL RELATIONSHIPS 2672 01:54:26,840 --> 01:54:28,040 WHICH ARE HARD TO DEFINE. 2673 01:54:28,040 --> 01:54:29,680 THEY CAN BE VERY IMPORTANT AND 2674 01:54:29,680 --> 01:54:31,960 HAVING A CHAMPION WITHIN A 2675 01:54:31,960 --> 01:54:34,560 COMPANY FOR YOUR DISORDER CAN BE 2676 01:54:34,560 --> 01:54:36,040 REALLY, REALLY TRANSFORMATIVE 2677 01:54:36,040 --> 01:54:38,040 BECAUSE AS A COMPANY LOOKED AT 2678 01:54:38,040 --> 01:54:39,320 REPORT PORTFOLIO OF ALL THE 2679 01:54:39,320 --> 01:54:41,320 DIFFERENT THINGS THEY'RE WORKING 2680 01:54:41,320 --> 01:54:43,360 ON, HAVING A VOCAL AND 2681 01:54:43,360 --> 01:54:44,640 COMPELLING CHAMPION WHEN YOU 2682 01:54:44,640 --> 01:54:47,560 HAVE FIVE PROJECTS THAT ARE KIND 2683 01:54:47,560 --> 01:54:49,080 OF HAVING TROUBLE AND THE 2684 01:54:49,080 --> 01:54:50,600 COMPANY IS TRYING TO DECIDE 2685 01:54:50,600 --> 01:54:54,760 WHERE TO DOU DEVOTE RESOURCES SO 2686 01:54:54,760 --> 01:54:55,760 DEVELOPING THOSE PERSONAL 2687 01:54:55,760 --> 01:54:56,800 RELATIONSHIPS WHICH IS EASIER 2688 01:54:56,800 --> 01:54:59,080 SAID THAN DONE BUT I DO THINK 2689 01:54:59,080 --> 01:55:03,560 THAT IS AN IMPORTANT COMPONENT 2690 01:55:03,560 --> 01:55:04,040 TO CONSIDER. 2691 01:55:04,040 --> 01:55:05,520 >> GREAT. 2692 01:55:05,520 --> 01:55:05,800 THANK YOU. 2693 01:55:05,800 --> 01:55:08,720 I'M GOING TO ENCOURAGE OUR 2694 01:55:08,720 --> 01:55:11,520 AUDIENCE NOW TO START PUTTING 2695 01:55:11,520 --> 01:55:13,760 THEIR QUESTIONS IN THE CHAT. 2696 01:55:13,760 --> 01:55:15,680 AS WE WAIT FOR PEOPLE TO PUT 2697 01:55:15,680 --> 01:55:18,080 THEIR QUESTIONS IN, I WANT TO 2698 01:55:18,080 --> 01:55:19,360 ASK THE OTHER SIDE OF THE 2699 01:55:19,360 --> 01:55:25,400 QUESTION I ASKED, WHICH IS, 2700 01:55:25,400 --> 01:55:35,920 AGAIN, NO NEED FOR -- TO GO ABLE 2701 01:56:09,880 --> 01:56:12,880 TO TAKE THE PROGRAM AND EITHER 2702 01:56:12,880 --> 01:56:16,560 CONTINUE DEVELOPING AND DO TON 2703 01:56:16,560 --> 01:56:23,120 YOUR OWN OR PLACE IT AND THE 2704 01:56:23,120 --> 01:56:24,080 FATE OF THE PROGRAM IS NOT 2705 01:56:24,080 --> 01:56:25,480 POSSIBLE AND NOT EVERY COMPANY 2706 01:56:25,480 --> 01:56:27,360 IS HAPPY TO DO THIS BUT IT HELPS 2707 01:56:27,360 --> 01:56:30,640 IF YOU ARE ABLE TO NEGOTIATE 2708 01:56:30,640 --> 01:56:33,880 THIS SO THERE HAVE BEEN CASES 2709 01:56:33,880 --> 01:56:37,160 WHERE THIS WAS AND DON'T HAVE 2710 01:56:37,160 --> 01:56:38,680 ANY CONTROL OVER THE PROGRAM IF 2711 01:56:38,680 --> 01:56:39,520 IT'S SHELVED AND PEOPLE DON'T 2712 01:56:39,520 --> 01:56:41,040 WANT TO HAND IT OVER TO SOMEONE 2713 01:56:41,040 --> 01:56:45,400 ELSE FOR COMPETITIVE REASONS AND 2714 01:56:45,400 --> 01:56:47,360 IS IT JUST DIES A SLOW DEATH AND 2715 01:56:47,360 --> 01:56:52,400 THAT'S REALLY THE WORST-CASE 2716 01:56:52,400 --> 01:56:54,000 SCENARIO SO THE SECOND THING IF 2717 01:56:54,000 --> 01:56:56,360 YOU ARE PARTNERING WITH A 2718 01:56:56,360 --> 01:56:58,000 COMPANY TO TRY TO UNDERSTAND 2719 01:56:58,000 --> 01:57:00,200 WHERE YOUR PROGRAM IS AND IN 2720 01:57:00,200 --> 01:57:02,880 THEIR PIPELINE IS IT GOING TO BE 2721 01:57:02,880 --> 01:57:04,560 THE FIRST OR SECOND OR THIRD 2722 01:57:04,560 --> 01:57:07,200 PRIORITY OR IS IT GOING TO BE 2723 01:57:07,200 --> 01:57:11,680 THE FIFTH OR 2:00 PLACE IN THE 2724 01:57:11,680 --> 01:57:15,120 LIST AND NOW WHEN THE MARKET WAS 2725 01:57:15,120 --> 01:57:20,600 GREAT A LOT OF PEOPLE HAD REALLY 2726 01:57:20,600 --> 01:57:23,000 PIPELINES AND NOW WHEN TIMES ARE 2727 01:57:23,000 --> 01:57:24,560 HARDER AND PEOPLE NEED TO GET 2728 01:57:24,560 --> 01:57:35,080 BACK IF YOU ARE NUMBER 15 THEY 2729 01:57:38,200 --> 01:57:39,200 ARE HIGHER WHEN THE TIMES ARE 2730 01:57:39,200 --> 01:57:43,040 GREAT AND THERE'S A LOT OF 2731 01:57:43,040 --> 01:57:51,280 RESOURCES AROUND. 2732 01:57:51,280 --> 01:57:52,040 >> AGREE OF EVERYTHING. 2733 01:57:52,040 --> 01:57:53,160 WHEN YOU THINK ABOUT 2734 01:57:53,160 --> 01:57:54,200 RELATIONSHIPS FAILING, WHETHER 2735 01:57:54,200 --> 01:57:55,960 IT'S BETWEEN AN ADVOCACY GROUP 2736 01:57:55,960 --> 01:58:00,880 AND AN INDUSTRY OR HUSBAND AND 2737 01:58:00,880 --> 01:58:02,840 WIFE, RIGHT, IT BREAKS DOWN 2738 01:58:02,840 --> 01:58:04,280 AROUND COMMUNICATION AND 2739 01:58:04,280 --> 01:58:08,480 MANAGING EXPECTATIONS, RIGHT. 2740 01:58:08,480 --> 01:58:13,000 IF YOU ARE SOMETIMES OUR 2741 01:58:13,000 --> 01:58:21,360 CHALLENGE IS NOT BEING DIRECTED 2742 01:58:21,360 --> 01:58:23,840 AND NOT SAY HERE IS THE PRIORITY 2743 01:58:23,840 --> 01:58:25,200 OF THIS PROGRAM AND THIS IS THE 2744 01:58:25,200 --> 01:58:26,480 STAGE IT'S AT AND THIS IS WHAT 2745 01:58:26,480 --> 01:58:28,360 WE NEED TO DEMONSTRATE TO MOVE 2746 01:58:28,360 --> 01:58:31,000 IT FORWARD AND THIS IS WHERE IT 2747 01:58:31,000 --> 01:58:33,240 SITS IN RELATIONSHIP TO 2748 01:58:33,240 --> 01:58:35,640 RESOURCES ACROSS THE COMPANY AND 2749 01:58:35,640 --> 01:58:37,520 WE MIGHT TEND TO SAY WE'RE 2750 01:58:37,520 --> 01:58:39,160 COMMITTED TO THIS DISEASE AND 2751 01:58:39,160 --> 01:58:47,600 WE'RE IN IT FOR THE LONG HALL 2752 01:58:47,600 --> 01:58:58,120 AND WHEN AND THE OTHER PARTNER. 2753 01:59:08,000 --> 01:59:09,880 >> LAURA DO YOU HAVE ANYTHING 2754 01:59:09,880 --> 01:59:11,200 ELSE TO ADD TO THAT? 2755 01:59:11,200 --> 01:59:12,720 >> WE'RE STILL WAITING ON 2756 01:59:12,720 --> 01:59:16,240 QUESTIONS BUT THERE'S A QUESTION 2757 01:59:16,240 --> 01:59:16,560 FROM DARLENE. 2758 01:59:16,560 --> 01:59:22,880 SHE SAID AND I DON'T KNOW IF 2759 01:59:22,880 --> 01:59:33,360 THERE'S SHOULD THEY FUND A 2760 01:59:33,360 --> 01:59:33,880 SEPARATE MOUSE. 2761 01:59:33,880 --> 01:59:36,440 >> YEAH, I THINK IT'S A GREAT 2762 01:59:36,440 --> 01:59:36,680 QUESTION. 2763 01:59:36,680 --> 01:59:37,920 FIRST TRY AND UNDERSTAND WHY HE 2764 01:59:37,920 --> 01:59:42,720 IS NOT WILLING TO SEND OUT THE 2765 01:59:42,720 --> 01:59:44,920 MOUSE AND MAYBE IT'S SOMETHING 2766 01:59:44,920 --> 01:59:46,560 RELATED TO HIS PUBLICATION AND 2767 01:59:46,560 --> 01:59:48,160 HE WANTS TO BE ON THE 2768 01:59:48,160 --> 01:59:49,800 PUBLICATIONS OR HE WANTS FUNDING 2769 01:59:49,800 --> 01:59:52,080 AND THERE'S ALWAYS THE REASON 2770 01:59:52,080 --> 01:59:55,480 WHY THIS IS NOT WHAT PEOPLE ARE 2771 01:59:55,480 --> 01:59:57,240 NOT WILLING TO SHARE AND TRY TO 2772 01:59:57,240 --> 01:59:59,240 UNDERSTAND BETTER AND MAYBE 2773 01:59:59,240 --> 02:00:00,440 ADDRESS THE SPECIFIC REASONS IF 2774 02:00:00,440 --> 02:00:02,160 NOT IF THERE'S NO OTHER CHOICE 2775 02:00:02,160 --> 02:00:04,560 AND NO OTHER MOUSE MODEL THEN 2776 02:00:04,560 --> 02:00:05,480 YEAH THEY WOULD. 2777 02:00:05,480 --> 02:00:07,040 YOU HAVE TO MAKE YOUR OWN MOUSE 2778 02:00:07,040 --> 02:00:08,840 MODEL THAT TAKES TIME AND IT 2779 02:00:08,840 --> 02:00:10,480 COST MONEY AND IT'S DEFINITELY 2780 02:00:10,480 --> 02:00:14,880 WORTH HAVING CONTROL OVER A KEY 2781 02:00:14,880 --> 02:00:16,280 COMPONENT OF ANY RESEARCH PLAN 2782 02:00:16,280 --> 02:00:17,800 THAT YOU ARE GOING TO BE 2783 02:00:17,800 --> 02:00:18,040 FUNDING. 2784 02:00:18,040 --> 02:00:20,040 >> YEAH. 2785 02:00:20,040 --> 02:00:21,680 THAT IS REALLY HARD. 2786 02:00:21,680 --> 02:00:22,880 LAURA, YOU GUYS HAVE DONE A 2787 02:00:22,880 --> 02:00:23,560 GREAT JOB. 2788 02:00:23,560 --> 02:00:25,960 I KNOW YOU MENTIONED YOU HAVE A 2789 02:00:25,960 --> 02:00:28,440 SUNSET DATE OF 2025, YOU GUYS 2790 02:00:28,440 --> 02:00:30,720 HAVE DONE A REALLY GREAT JOB OF 2791 02:00:30,720 --> 02:00:31,920 LEVERAGING FUNDING FROM OTHER 2792 02:00:31,920 --> 02:00:33,240 SOURCES AND YOUR PARTNERSHIPS, 2793 02:00:33,240 --> 02:00:36,560 CAN YOU TALK ABOUT THAT SUNSET 2794 02:00:36,560 --> 02:00:37,720 PROVISION AND ARE YOU GUYS 2795 02:00:37,720 --> 02:00:38,440 STICKING TO THAT? 2796 02:00:38,440 --> 02:00:40,760 I MEAN YOU HAVE FOUR DRUGS NOW 2797 02:00:40,760 --> 02:00:44,000 GOING INTO CLINICAL TRIAL BUT 2798 02:00:44,000 --> 02:00:45,120 CAN YOU TALK A LITTLE BIT ABOUT 2799 02:00:45,120 --> 02:00:46,800 HOW YOU LEVERAGED YOUR 2800 02:00:46,800 --> 02:00:48,200 PARTNERSHIPS, ESPECIALLY IN THE 2801 02:00:48,200 --> 02:00:48,680 FUNDING SIDE? 2802 02:00:48,680 --> 02:00:54,560 >> SURE, I DO THINK IT UNUSUAL T 2803 02:00:54,560 --> 02:00:56,400 OUR FOUNDERS WERE INTENTIONAL IN 2804 02:00:56,400 --> 02:00:58,120 IT BECAUSE IT FORCES US TO BE 2805 02:00:58,120 --> 02:01:02,360 HIGHLY FOCUSED AND I THINK TO 2806 02:01:02,360 --> 02:01:12,800 MAKE SOME -- I THINK LAURA 2807 02:01:28,760 --> 02:01:29,440 FROZE. 2808 02:01:29,440 --> 02:01:30,320 HOPEFULLY SHE CAN COME BACK. 2809 02:01:30,320 --> 02:01:32,120 >> YES, EVERYONE ELSE SEEMS 2810 02:01:32,120 --> 02:01:32,320 FINE. 2811 02:01:32,320 --> 02:01:35,560 >> OK. 2812 02:01:35,560 --> 02:01:40,480 >> AS WE WAIT FOR LAURA TO COME 2813 02:01:40,480 --> 02:01:46,120 BACK, LET'S JUST MOVE ON TO THIS 2814 02:01:46,120 --> 02:01:48,080 QUESTION ON WHAT CAREGIVERS AND 2815 02:01:48,080 --> 02:01:50,280 PATIENTS CAN DO TO ADVANCE 2816 02:01:50,280 --> 02:01:53,960 SCIENCE OUTSIDE OF FUNDING 2817 02:01:53,960 --> 02:01:54,280 FOUNDATIONS. 2818 02:01:54,280 --> 02:01:56,920 TIME IS MONEY TO INDUSTRY AND I 2819 02:01:56,920 --> 02:01:57,760 THINK THAT WE HAVE INDIVIDUALS 2820 02:01:57,760 --> 02:01:59,880 AND SHE'S REPRESENTING ALS AND 2821 02:01:59,880 --> 02:02:01,600 THEY HAVE A GREAT DEAL TO OFFER 2822 02:02:01,600 --> 02:02:03,760 TO INDUSTRY THAT CAN HELP 2823 02:02:03,760 --> 02:02:05,680 THERAPY DEVELOPMENT MOVE FORWARD 2824 02:02:05,680 --> 02:02:06,200 FASTER. 2825 02:02:06,200 --> 02:02:07,960 I THINK CATHERINE, YOU MIGHT BE 2826 02:02:07,960 --> 02:02:11,120 ABLE TO ANSWER THAT QUESTION. 2827 02:02:11,120 --> 02:02:14,320 >> YOU KNOW, IT DOESN'T HAVE TO 2828 02:02:14,320 --> 02:02:16,640 BE A FUNDING AND IT'S TO 2829 02:02:16,640 --> 02:02:20,600 IDENTIFY WHAT ARE SOME OF THE 2830 02:02:20,600 --> 02:02:22,040 BARRIERS THAT ARE IN PLACE TO 2831 02:02:22,040 --> 02:02:26,120 DRUG DEVELOPMENT AND MAYBE IT'S 2832 02:02:26,120 --> 02:02:28,160 AN ISSUE OF ACCESS TO DATA RIGHT 2833 02:02:28,160 --> 02:02:32,120 AND I THINK THAT THE QUESTION 2834 02:02:32,120 --> 02:02:33,960 WAS ACCESS TO A MOUSE MODEL, 2835 02:02:33,960 --> 02:02:35,960 WELL, YOU KNOW, I THINK WE ALL 2836 02:02:35,960 --> 02:02:38,400 EXPERIENCE CHALLENGES WHERE SOME 2837 02:02:38,400 --> 02:02:42,400 DATA IS SILOED AND IT'S REALLY 2838 02:02:42,400 --> 02:02:45,480 HARD TO ACCESS IT AS AN INDUSTRY 2839 02:02:45,480 --> 02:02:47,640 SPONSOR AND WHEN WE HAVE TO 2840 02:02:47,640 --> 02:02:50,240 UNDERSTAND WHAT IS NATURAL 2841 02:02:50,240 --> 02:02:53,080 HISTORY AND SO ARE THERE THINGS 2842 02:02:53,080 --> 02:02:55,280 THAT YOU AS AN ORGANIZATION CAN 2843 02:02:55,280 --> 02:02:57,240 BE DOING THAT ENABLED THAT IN 2844 02:02:57,240 --> 02:03:04,160 YOU ARE JOINING CO CONSORTIA SOT 2845 02:03:04,160 --> 02:03:05,440 DOESN'T HAVE TO BE SPECIFICALLY 2846 02:03:05,440 --> 02:03:07,160 FUNDING BUT A GOOD SENSE OF SOME 2847 02:03:07,160 --> 02:03:11,200 OF THE EXISTING CHALLENGES IN 2848 02:03:11,200 --> 02:03:16,680 THE RESEARCH DEVELOPMENT SPACE 2849 02:03:16,680 --> 02:03:18,840 FOR YOUR COMMUNITY. 2850 02:03:18,840 --> 02:03:19,600 >> GREAT. 2851 02:03:19,600 --> 02:03:21,360 LAURA WE LOST YOU FOR A LITTLE 2852 02:03:21,360 --> 02:03:21,520 BIT. 2853 02:03:21,520 --> 02:03:24,760 I DON'T KNOW WHERE ENDED. 2854 02:03:24,760 --> 02:03:27,880 >> I'M SORRY. 2855 02:03:27,880 --> 02:03:29,120 WORKING WITH OTHER FOUNDATIONS 2856 02:03:29,120 --> 02:03:30,360 IF YOU HAVE THEM IN YOUR SPACE 2857 02:03:30,360 --> 02:03:31,080 IS GREAT. 2858 02:03:31,080 --> 02:03:36,200 THAT WAS MY POINT. 2859 02:03:36,200 --> 02:03:38,920 LET'S TAKE THIS QUESTION FROM 2860 02:03:38,920 --> 02:03:42,200 SARAH FROM THE SPINA BIFIDA 2861 02:03:42,200 --> 02:03:42,640 ASSOCIATION. 2862 02:03:42,640 --> 02:03:44,440 AND SHE SAID OUR ORGANIZATION 2863 02:03:44,440 --> 02:03:49,200 PUBLISHED OUR FIRST COMMUNITY 2864 02:03:49,200 --> 02:03:53,120 AND THEY WANT ANSWERED AND IT'S 2865 02:03:53,120 --> 02:04:03,560 CONSIDERED AND COME SHOULD 2866 02:04:08,480 --> 02:04:10,080 PATIENT GROUPS DO FIRST? 2867 02:04:10,080 --> 02:04:13,120 DO YOU WANTED TO RESTATE THAT 2868 02:04:13,120 --> 02:04:13,360 FOR THIS? 2869 02:04:13,360 --> 02:04:14,920 >> I'M SORRY, I THOUGHT LAURA 2870 02:04:14,920 --> 02:04:16,960 WAS ADDRESSING THAT QUESTION. 2871 02:04:16,960 --> 02:04:18,720 >> ANYONE. 2872 02:04:18,720 --> 02:04:28,640 LAURA, YOU CAN. 2873 02:04:28,640 --> 02:04:32,480 I THINK IS MAYBE A LITTLE UNDER 2874 02:04:32,480 --> 02:04:35,040 APPRECIATED AND UNDERSTANDING 2875 02:04:35,040 --> 02:04:35,840 THE SINCE IS OF COURSE THE 2876 02:04:35,840 --> 02:04:42,640 FOUNDATION OF ANY DRUG AND IT'S 2877 02:04:42,640 --> 02:04:44,280 EASIER TO ADDRESS AND ALTHOUGH 2878 02:04:44,280 --> 02:04:46,160 WE CERTAINLY FEEL LIKE WE HAVE 2879 02:04:46,160 --> 02:04:50,800 DONE A LOT TO INFLUENCE DRUG 2880 02:04:50,800 --> 02:04:53,760 DEVELOPMENT IN THE SPACE WE 2881 02:04:53,760 --> 02:04:55,200 REALIZE BECAUSE OF THE MECHANISM 2882 02:04:55,200 --> 02:04:58,800 OF DISEASE MUTATIONS CAUSE A 2883 02:04:58,800 --> 02:05:02,000 DEFICIENCY SO IT'S STRAIGHT FORD 2884 02:05:02,000 --> 02:05:02,640 THERAPEUTIC APPROACH INDIVIDUALS 2885 02:05:02,640 --> 02:05:04,920 HAD HALF THE AMOUNT OF NORMAL 2886 02:05:04,920 --> 02:05:06,800 THAN THEY SHOULD SO IT'S A 2887 02:05:06,800 --> 02:05:10,040 REPLACEMENT STRATEGY AND 2888 02:05:10,040 --> 02:05:11,480 INCREASING REALLY VERY STRAIGHT 2889 02:05:11,480 --> 02:05:13,640 FORWARD AND HOPEFULLY, RIGHT AND 2890 02:05:13,640 --> 02:05:16,080 I THINK THAT IT HAS BEEN 2891 02:05:16,080 --> 02:05:18,320 ENORMOUS BENEFIT AND SO I THINK 2892 02:05:18,320 --> 02:05:19,480 SOMETIMES UNFORTUNATELY, IT'S 2893 02:05:19,480 --> 02:05:21,240 JUST A LONGER STRUGGLE IF IT'S 2894 02:05:21,240 --> 02:05:22,760 NOT A CLEAR STRAIGHT FORWARD 2895 02:05:22,760 --> 02:05:23,720 THERAPEUTIC APPROACH OR IF 2896 02:05:23,720 --> 02:05:27,040 THERE'S NOT AS MUCH BASIC 2897 02:05:27,040 --> 02:05:28,280 SCIENCE UNDERSTOOD ABOUT THE 2898 02:05:28,280 --> 02:05:31,400 MECHANISM OF DISEASE AND THESE 2899 02:05:31,400 --> 02:05:33,000 THINGS TAKE TIME. 2900 02:05:33,000 --> 02:05:35,840 FUNDING BASIC SCIENCE AND 2901 02:05:35,840 --> 02:05:39,080 DISCOVERY RESEARCH AS NECESSARY 2902 02:05:39,080 --> 02:05:45,320 TO HELP MAKE CLEAR PER 2903 02:05:45,320 --> 02:05:46,240 THERAPEUTIC APPROACHES. 2904 02:05:46,240 --> 02:05:47,120 >> WE HAVE ANOTHER QUESTION 2905 02:05:47,120 --> 02:05:47,320 HERE. 2906 02:05:47,320 --> 02:05:49,200 WE HAVE A QUESTION AT END POINTS 2907 02:05:49,200 --> 02:05:50,440 AND DO YOU HAVE ANY SUGGESTIONS 2908 02:05:50,440 --> 02:05:54,000 ABOUT HOW TO PER WAYED INDUSTRY 2909 02:05:54,000 --> 02:05:56,160 TO ACCEPT CLINICAL END POINTS 2910 02:05:56,160 --> 02:05:57,600 WITH PATIENTS AND CAREGIVERS, 2911 02:05:57,600 --> 02:05:59,320 OTHER THAN WHAT THEY, THE 2912 02:05:59,320 --> 02:06:01,200 INDUSTRY MIGHT BELIEVE ARE THE 2913 02:06:01,200 --> 02:06:11,640 APPROPRIATE END POINTS. 2914 02:06:15,400 --> 02:06:19,440 >> YES, THERE'S A BALANCE AND A 2915 02:06:19,440 --> 02:06:22,160 DISCUSSION BETWEEN THE END 2916 02:06:22,160 --> 02:06:24,080 POINTS THAT ARE MEANINGFUL FOR 2917 02:06:24,080 --> 02:06:26,200 PATIENTS, RIGHT, AS DEFINED BY 2918 02:06:26,200 --> 02:06:27,640 WHAT YOU HAVE TO DEMONSTRATE BY 2919 02:06:27,640 --> 02:06:31,520 THE FDA AND HOW THEY CAN BE 2920 02:06:31,520 --> 02:06:34,000 MEASURED AND THAT IS SOMETIMES A 2921 02:06:34,000 --> 02:06:34,480 CHALLENGE. 2922 02:06:34,480 --> 02:06:37,080 AND THEN THE LANGUAGE OF DATA 2923 02:06:37,080 --> 02:06:39,640 ABOUT THE END POINT THAT THE FDA 2924 02:06:39,640 --> 02:06:50,000 IS GOING TO ACCEPT. 2925 02:07:19,800 --> 02:07:24,000 >> ASSUME CERTAIN RISKS IN ORDER 2926 02:07:24,000 --> 02:07:26,600 TO GET A BENEFIT FROM AN 2927 02:07:26,600 --> 02:07:28,160 INVESTIGATIONAL THERAPY AND THE 2928 02:07:28,160 --> 02:07:31,200 TRADE OFFS IS THEY WILL USE 2929 02:07:31,200 --> 02:07:32,880 PERHAPS, IN SOME OF THOSE 2930 02:07:32,880 --> 02:07:34,760 CLINICAL END POINTS SO DOING 2931 02:07:34,760 --> 02:07:36,880 SOME OF THAT STRUCTURED RESEARCH 2932 02:07:36,880 --> 02:07:39,160 TO SAY, THIS IS WHAT THE 2933 02:07:39,160 --> 02:07:41,840 COMMUNITY IS WILLING TO DO. 2934 02:07:41,840 --> 02:07:43,160 RESPONSORS WILL LOOK AT THAT AND 2935 02:07:43,160 --> 02:07:45,400 SAY OH MY GOSH, I HAVE NO IDEA 2936 02:07:45,400 --> 02:07:47,320 AND IN TERMS OF PREFERENCES WHAT 2937 02:07:47,320 --> 02:07:49,200 I'M PRO FOESING IS SO FAR AT THE 2938 02:07:49,200 --> 02:07:52,560 BOTTOM OF THE LIST AND AND 2939 02:07:52,560 --> 02:07:53,520 REGULATORS WILL SAY THE 2940 02:07:53,520 --> 02:07:59,680 COMMUNITY IS SPEAKING AS A WHOLE 2941 02:07:59,680 --> 02:08:04,120 AND WE CAN SEE A DIFFERENT RISK 2942 02:08:04,120 --> 02:08:05,800 BENEFIT UNDERSTATED PATIENT 2943 02:08:05,800 --> 02:08:08,640 PREFERENCE RESEARCH, RIGHT, SO 2944 02:08:08,640 --> 02:08:14,000 KIND OF COUPLE POINTS TO THAT 2945 02:08:14,000 --> 02:08:14,240 QUESTION. 2946 02:08:14,240 --> 02:08:17,000 >> YOU COVERED EVERYTHING I 2947 02:08:17,000 --> 02:08:19,080 WANTED TO SAY BUT THE 2948 02:08:19,080 --> 02:08:20,160 PATIENT-FOCUSED MEETINGS ARE 2949 02:08:20,160 --> 02:08:22,360 USEFUL FOR THAT SO IF YOU HAVE 2950 02:08:22,360 --> 02:08:26,480 DONE YOUR RESEARCH AND YOU HAVE 2951 02:08:26,480 --> 02:08:27,400 INVESTIGATED THE COMMUNITY ON 2952 02:08:27,400 --> 02:08:29,280 WHAT END POINTS WOULD MATTER TO 2953 02:08:29,280 --> 02:08:33,160 THEM AND WHAT THE RISK IS 2954 02:08:33,160 --> 02:08:34,240 THEY'RE WILLING TO TAKE, WHEN 2955 02:08:34,240 --> 02:08:36,360 YOU TALK TO THE FDA YOU BRING IT 2956 02:08:36,360 --> 02:08:38,320 UP IN THESE PATIENT FOCUSED 2957 02:08:38,320 --> 02:08:41,280 MEETING AND FAMILIARIZE THEM 2958 02:08:41,280 --> 02:08:44,960 WITH YOUR LIMITS AS A PATIENT 2959 02:08:44,960 --> 02:08:46,040 GROUP AND IT'S DIFFICULT BECAUSE 2960 02:08:46,040 --> 02:08:50,200 WITHIN A PATIENT GROUP, THERE 2961 02:08:50,200 --> 02:08:51,920 WILL BE FAMILIES THAT WILL TAKE 2962 02:08:51,920 --> 02:08:53,520 MORE RISK THAN OTHERS SO THEY 2963 02:08:53,520 --> 02:08:55,600 WILL ENROLL FIRST IN THE CLIP 2964 02:08:55,600 --> 02:08:56,640 CAL TRIALS? 2965 02:08:56,640 --> 02:08:57,040 PROBABLY. 2966 02:08:57,040 --> 02:08:57,800 BUT WHAT HAPPENS WITH ALL THE 2967 02:08:57,800 --> 02:08:58,840 OTHER FAMILIES THAT ARE NOT 2968 02:08:58,840 --> 02:09:03,600 WILLING TO TAKE THAT RISK? 2969 02:09:03,600 --> 02:09:05,480 IT'S A BIG DISCUSSION YOU ARE 2970 02:09:05,480 --> 02:09:06,680 TALKING ABOUT WHICH IS ONE AND 2971 02:09:06,680 --> 02:09:08,440 DONE AND YOU CAN'T REVERSE IT 2972 02:09:08,440 --> 02:09:10,480 AND THE BENEFITS YOU GET WITH IT 2973 02:09:10,480 --> 02:09:12,120 THERE MIGHT BE SOME OTHER THINGS 2974 02:09:12,120 --> 02:09:14,560 THAT YOU GET WITH IT AS WELL BUT 2975 02:09:14,560 --> 02:09:16,480 MAY NOT HAVE SIGNED UP FOR. 2976 02:09:16,480 --> 02:09:19,800 YOU DID SIGN UP FOR BUT HOPING 2977 02:09:19,800 --> 02:09:21,360 IT WON'T HAPPEN. 2978 02:09:21,360 --> 02:09:24,040 >> WE HAVE JUST A COUPLE MINUTES 2979 02:09:24,040 --> 02:09:24,400 LEFT. 2980 02:09:24,400 --> 02:09:26,840 AND I HAVE TWO QUESTIONS FOR 2981 02:09:26,840 --> 02:09:28,520 YOU, ONE, AND EACH OF YOU CAN 2982 02:09:28,520 --> 02:09:30,240 ANSWER THIS, THE GREATEST 2983 02:09:30,240 --> 02:09:32,240 MISCONCEPTION THAT YOU THINK A 2984 02:09:32,240 --> 02:09:39,200 PATIENT GROUPS HAVE OF INDUSTRY 2985 02:09:39,200 --> 02:09:41,000 AND INDUCE TREMENDOUS HAS I 2986 02:09:41,000 --> 02:09:42,960 PATIENTS AND YOUR LAST TAKEAWAY 2987 02:09:42,960 --> 02:09:48,560 YOU WOULD LIKE TO SHARE AND 2988 02:09:48,560 --> 02:09:51,480 ADVICE YOU WOULD GIVE PATIENT 2989 02:09:51,480 --> 02:09:53,480 ADVOCACY GROUPS SEEKING WITH 2990 02:09:53,480 --> 02:09:54,920 STRONG RELATIONSHIP WITH PHARMA 2991 02:09:54,920 --> 02:09:58,000 AND INDUSTRY. 2992 02:09:58,000 --> 02:10:00,600 >> ANYONE CAN START. 2993 02:10:00,600 --> 02:10:02,080 LAURA, WHY DON'T YOU START. 2994 02:10:02,080 --> 02:10:04,840 >> I GUESS THE MISCONCEPTION 2995 02:10:04,840 --> 02:10:07,400 WOULD BE PERHAPS I DO THINK 2996 02:10:07,400 --> 02:10:12,800 THERE CAN BE A PERCEPTION OF 2997 02:10:12,800 --> 02:10:15,520 PHARMA BEING SOLELY MOTIVATED BY 2998 02:10:15,520 --> 02:10:18,120 MONEY AND ALTHOUGH OF COURSE 2999 02:10:18,120 --> 02:10:19,960 THEY'RE A MONEY-MAKING 3000 02:10:19,960 --> 02:10:22,440 ENTERPRISE THEY'RE VERY HUMAN 3001 02:10:22,440 --> 02:10:24,360 SCIENTISTS WORKING WITHIN PHARMA 3002 02:10:24,360 --> 02:10:25,520 WHO ARE DEDICATING THEIR LIVES 3003 02:10:25,520 --> 02:10:29,520 AND WORKING VERY LONG HOURS TO 3004 02:10:29,520 --> 02:10:32,640 HELP CREATE DRUGS TO HELP FIGHT 3005 02:10:32,640 --> 02:10:35,160 DISEASES AND I THINK MUCH TIMES 3006 02:10:35,160 --> 02:10:39,120 ONE TO ONE BUILT THESE 3007 02:10:39,120 --> 02:10:39,880 RELATIONSHIPS WITH FARTHER SUED 3008 02:10:39,880 --> 02:10:42,080 CAL SCIENTIST TO SEE THEIR LEVEL 3009 02:10:42,080 --> 02:10:43,120 OF DEVOTION AND THE WORK THAT 3010 02:10:43,120 --> 02:10:45,760 THEY DO IS REALLY GRATIFYING AND 3011 02:10:45,760 --> 02:10:48,000 I THINK FROM THE SECOND QUESTION 3012 02:10:48,000 --> 02:10:50,560 ABOUT WHAT IS THE BIGGEST 3013 02:10:50,560 --> 02:10:52,960 ADVICE, I THINK NOT TO UNDER 3014 02:10:52,960 --> 02:10:54,520 VALUE YOUR OWN CONTRIBUTIONS AND 3015 02:10:54,520 --> 02:10:56,360 WHAT YOU CAN DO AND TO GET 3016 02:10:56,360 --> 02:10:58,240 STARTED AS EARLY AS POSSIBLE ON 3017 02:10:58,240 --> 02:11:08,800 CREATING PATIENT REGISTRIES AND. 3018 02:11:30,280 --> 02:11:31,760 >> IT COMES FROM THE PATIENT 3019 02:11:31,760 --> 02:11:33,240 GROUPS THAT THIS IS DEFINITELY 3020 02:11:33,240 --> 02:11:35,480 CHANGING AND PEOPLE LIKE MYSELF, 3021 02:11:35,480 --> 02:11:37,240 WE'RE A SMALL COMPANY AND WE ALL 3022 02:11:37,240 --> 02:11:40,440 KNOW THE VALUE OF WHAT THE 3023 02:11:40,440 --> 02:11:41,400 PATIENT GROUP HAS BEEN THROUGH 3024 02:11:41,400 --> 02:11:43,120 THE TABLE BUT A BIG COMPANY LIKE 3025 02:11:43,120 --> 02:11:45,480 PFIZER HAVING A PERSON LIKE 3026 02:11:45,480 --> 02:11:47,080 CATHERINE, AND OBVIOUSLY SHE 3027 02:11:47,080 --> 02:11:48,960 UNDERSTANDS THE VALUE AND SHE IS 3028 02:11:48,960 --> 02:11:50,120 THE SEG WAY INTO THE COMPANY IN 3029 02:11:50,120 --> 02:11:54,320 MANY CASES AND IT'S THE GREAT 3030 02:11:54,320 --> 02:11:56,720 JOB THAT EACH AND EVERY ONE OF 3031 02:11:56,720 --> 02:11:58,320 YOU ARE DOING IN MAKING SURE WE 3032 02:11:58,320 --> 02:11:59,640 UNDERSTAND WHAT EXPERTISE YOU 3033 02:11:59,640 --> 02:12:00,560 BRING TO THE TABLE. 3034 02:12:00,560 --> 02:12:02,640 >> LAST ADVICE, KATHRYN. 3035 02:12:02,640 --> 02:12:05,160 >> OH MY GOODNESS, I WOULD SAY, 3036 02:12:05,160 --> 02:12:08,040 I'M STILL REFLECTING ON THE 3037 02:12:08,040 --> 02:12:09,360 MISCONCEPTIONS AND AGREE THAT 3038 02:12:09,360 --> 02:12:13,080 INDUSTRY TENDS TO UNDER 3039 02:12:13,080 --> 02:12:14,880 APPRECIATE THE EXPERTISE IN THE 3040 02:12:14,880 --> 02:12:16,440 PATIENT COMMUNITY AND IN 3041 02:12:16,440 --> 02:12:18,440 REVERSE, THERE'S PROBABLY A 3042 02:12:18,440 --> 02:12:20,320 MISCONCEPTION AROUND INDUSTRY 3043 02:12:20,320 --> 02:12:22,400 THAT WE'RE KIND OF WITHHOLDING 3044 02:12:22,400 --> 02:12:25,880 INFORMATION AND WE KNOW THAT THE 3045 02:12:25,880 --> 02:12:27,920 PATH WAY WITH CERTAINTY IN 3046 02:12:27,920 --> 02:12:28,920 DEVELOPING A DRUG AND THAT'S 3047 02:12:28,920 --> 02:12:30,240 JUST NOT THE CASE BECAUSE YOU 3048 02:12:30,240 --> 02:12:33,640 KNOW, THE INTEREST IS REALLY 3049 02:12:33,640 --> 02:12:36,720 EMPLOYING INNOVATIVE MECHANISMS 3050 02:12:36,720 --> 02:12:39,760 AND DRUGS WHERE THE PATH ISN'T 3051 02:12:39,760 --> 02:12:41,560 MAPPED OUT FOR US AND WE'RE ALL 3052 02:12:41,560 --> 02:12:45,240 KIND OF LEARNING AS WE GO AND 3053 02:12:45,240 --> 02:12:48,000 APPLYING OUR EXPERTISE BUT IT'S 3054 02:12:48,000 --> 02:12:50,040 NOT SOME MAGIC BULLET THAT WE'RE 3055 02:12:50,040 --> 02:12:54,880 HOLDING ON TO AND NOT PAYING 3056 02:12:54,880 --> 02:12:57,520 ATTENTION TO. 3057 02:12:57,520 --> 02:13:01,240 THANK YOU FOR THIS WONDERFUL 3058 02:13:01,240 --> 02:13:02,080 INSIGHTFUL DISCUSSION. 3059 02:13:02,080 --> 02:13:04,040 THANK YOU FOR ATTENDING OUR 3060 02:13:04,040 --> 02:13:05,320 SESSION AND WE LOOK FORWARD TO 3061 02:13:05,320 --> 02:13:05,760 THE NEXT. 3062 02:13:05,760 --> 02:13:09,360 THANK YOU, EVERYONE. 3063 02:13:09,360 --> 02:13:11,560 >> THANK YOU ALL SO MUCH FOR 3064 02:13:11,560 --> 02:13:13,520 MODERATING THAT FANTASTIC 3065 02:13:13,520 --> 02:13:14,120 SESSION. 3066 02:13:14,120 --> 02:13:15,800 SO, WITH THAT, I AM GOING TO 3067 02:13:15,800 --> 02:13:19,400 TAKE US INTO OUR NEXT SESSION 3068 02:13:19,400 --> 02:13:22,720 WHICH IS HOW TO FIND INNOVATIVE 3069 02:13:22,720 --> 02:13:24,080 METHODS TO FUND RESEARCH IN AN 3070 02:13:24,080 --> 02:13:26,120 EFFORT TO SUPPORT SCIENCE AS A 3071 02:13:26,120 --> 02:13:27,760 SMALL BUSINESS SO THIS SESSION 3072 02:13:27,760 --> 02:13:29,640 WILL BE MODERATED BY OUR 3073 02:13:29,640 --> 02:13:34,520 NON-PROFIT FORM EXECUTIVE ME 3074 02:13:34,520 --> 02:13:34,880 GERALDINE BLISS. 3075 02:13:34,880 --> 02:13:37,520 THE PRESIDENT AND CO-FOUNDER OF 3076 02:13:37,520 --> 02:13:39,320 CURESHANK, A NON-PROFIT 3077 02:13:39,320 --> 02:13:42,680 ORGANIZATION WITH ACCELERATED 3078 02:13:42,680 --> 02:13:48,520 DRUG IN PMS AND RELATED SHARINGK 3079 02:13:48,520 --> 02:13:48,800 DISORDERS. 3080 02:13:48,800 --> 02:13:50,560 SHE SERVED ON THE BOARD OF 3081 02:13:50,560 --> 02:13:52,680 DISTRICTORS FOR TWO YEARS AND 3082 02:13:52,680 --> 02:13:53,640 RESEARCH CHAIRPERSON FOR SEVEN. 3083 02:13:53,640 --> 02:13:55,160 AND THAT ROLE SHE CHAIRED THE 3084 02:13:55,160 --> 02:13:57,040 FIRST SCIENTIFIC STRATEGIC 3085 02:13:57,040 --> 02:13:58,560 PLANNING INITIATIVE SUCCESSFULLY 3086 02:13:58,560 --> 02:13:59,960 A REPLIED FOR GRANTS TO FURTHER 3087 02:13:59,960 --> 02:14:03,680 PMS RESEARCH SUPPORT INITIATIVES 3088 02:14:03,680 --> 02:14:07,040 AND ORGANIZED SIM POSIA IN 2012, 3089 02:14:07,040 --> 02:14:10,400 14 AND 18 A MEETING IN '13 AND 3090 02:14:10,400 --> 02:14:15,880 MULTIPLE WORKSHOPS ON PMS AND 3091 02:14:15,880 --> 02:14:17,760 THE 2016 ASK 2018 AND FAMILY 3092 02:14:17,760 --> 02:14:19,640 CONFERENCE RESEARCH SESSION THIS 3093 02:14:19,640 --> 02:14:21,640 IS 2010, 2012 AND 2014 AND 3094 02:14:21,640 --> 02:14:25,200 ESTABLISHED A PMS RESEARCH 3095 02:14:25,200 --> 02:14:26,400 REPOSITORY PARTNERSHIP WITH 3096 02:14:26,400 --> 02:14:29,040 AUTISM BRAIN AND THE NINH AMONG 3097 02:14:29,040 --> 02:14:30,680 MANY OTHER ACCOMPLISHMENTS I'M 3098 02:14:30,680 --> 02:14:33,280 NOT SURE WHEN SHE SLEEPS AND SHE 3099 02:14:33,280 --> 02:14:35,440 HAS SERVED AS A LAY REVIEWER FOR 3100 02:14:35,440 --> 02:14:39,640 THE FDA AND HAS A BACHELORS FROM 3101 02:14:39,640 --> 02:14:42,600 TRINITY AND MASTER FROM THE 3102 02:14:42,600 --> 02:14:44,800 UNIVERSITY OF HOUSE ON AND HER 3103 02:14:44,800 --> 02:14:46,120 PERSONAL MISSION IS TO HAVE 3104 02:14:46,120 --> 02:14:48,120 CURES FOR PMS, SHE AND HER 3105 02:14:48,120 --> 02:14:49,960 HUSBAND BRAD HAVE TWO SONS, 3106 02:14:49,960 --> 02:14:51,080 CHARLES AND NATHAN AND CHARLES 3107 02:14:51,080 --> 02:14:55,120 DOES HAVE PMS CAUSED BY THE 3108 02:14:55,120 --> 02:14:57,360 SHANK 3 GENE SO WITH THAT, 3109 02:14:57,360 --> 02:14:59,680 PLEASE TAKE IT AWAY FOR OUR NEXT 3110 02:14:59,680 --> 02:15:00,000 SESSION. 3111 02:15:00,000 --> 02:15:03,000 >> GREAT, THANK YOU FOR THAT 3112 02:15:03,000 --> 02:15:04,040 NICE INTRODUCTION. 3113 02:15:04,040 --> 02:15:05,400 FOR THOSE OF YOU WHO 3114 02:15:05,400 --> 02:15:07,560 PARTICIPATED IN THE NINDS 3115 02:15:07,560 --> 02:15:10,680 NON-PROFIT FORUM LAST YEAR, YOU 3116 02:15:10,680 --> 02:15:13,320 MIGHT REMEMBER ALISON WHO GAVE A 3117 02:15:13,320 --> 02:15:16,240 TALK ABOUT THE FOUNDATION FOR 3118 02:15:16,240 --> 02:15:17,440 PMS THERAPEUTICS AND THE COMPANY 3119 02:15:17,440 --> 02:15:20,160 THEY STARTED CALLED GENETICS AND 3120 02:15:20,160 --> 02:15:21,560 THEY ULTIMATELY PARTNERED WITH 3121 02:15:21,560 --> 02:15:22,960 YOU WILL INTEREST GENICS TO 3122 02:15:22,960 --> 02:15:26,640 DEVELOP A ASL TREATMENT FOR 3123 02:15:26,640 --> 02:15:29,000 PATIENTS AS YOU JUST HEARD 3124 02:15:29,000 --> 02:15:31,360 MENTIONED IN THE LAST PANEL, 3125 02:15:31,360 --> 02:15:37,000 YESTERDAY, ULTRA-AGA IT WAS ACQP 3126 02:15:37,000 --> 02:15:38,520 FRONT PLUS ROYALTY PAYMENTS SO 3127 02:15:38,520 --> 02:15:40,280 IT'S A REALLY EXCITING OUT AND 3128 02:15:40,280 --> 02:15:42,520 AND JUST REALLY SUPER EXCITING 3129 02:15:42,520 --> 02:15:46,520 FOR THE COMMUNITY. 3130 02:15:46,520 --> 02:15:49,800 SO TODAY, WE'RE GOING TO 3131 02:15:49,800 --> 02:15:50,800 CONTINUE THIS DISCUSSION ABOUT 3132 02:15:50,800 --> 02:15:52,440 HOW NON-PROFIT GROUPS CAN 3133 02:15:52,440 --> 02:15:53,480 SUPPORT SCIENCE AS A SMALL 3134 02:15:53,480 --> 02:15:55,360 BUSINESS AND HOW TO FIND 3135 02:15:55,360 --> 02:15:57,040 INNOVATIVE METHODS TO FUND 3136 02:15:57,040 --> 02:16:00,680 RESEARCH AND OUR FIRST SPEAKER 3137 02:16:00,680 --> 02:16:02,440 IS JILL WOOD FROM PHOENIX NEST. 3138 02:16:02,440 --> 02:16:06,400 JILL IS THE FOUNDER AND C.E.O. 3139 02:16:06,400 --> 02:16:07,040 PHOENIX NEST WHICH IS THE 3140 02:16:07,040 --> 02:16:10,160 BIOTECH COMPANY FOCUSED ON 3141 02:16:10,160 --> 02:16:11,920 TREATING THE SYNDROME AND YOU 3142 02:16:11,920 --> 02:16:13,640 MIGHT KNOW JILL AS THE MOM TO 3143 02:16:13,640 --> 02:16:15,480 JONAH AND THE FOUNDER OF JONAH 3144 02:16:15,480 --> 02:16:16,880 JUST BEGUN A NON-PROFIT 3145 02:16:16,880 --> 02:16:18,640 ORGANIZATION TO RAISE AWARENESS 3146 02:16:18,640 --> 02:16:22,160 IS SUPPORT FOR INDIVIDUALS. 3147 02:16:22,160 --> 02:16:23,920 JILL WILL TALK TO US ABOUT 3148 02:16:23,920 --> 02:16:26,320 PHOENIX NEST AND HER SUCCESS AND 3149 02:16:26,320 --> 02:16:28,400 OBTAINING SMALL BUSINESS FUNDING 3150 02:16:28,400 --> 02:16:35,320 FROM THE NINDS. 3151 02:16:35,320 --> 02:16:38,400 CAN WE GO AHEAD AND GET JILL 3152 02:16:38,400 --> 02:16:39,040 STARTED, THEN. 3153 02:16:39,040 --> 02:16:42,160 >> I UNMUTED MYSELF. 3154 02:16:42,160 --> 02:16:43,200 I'LL TAKE IF FROM HERE. 3155 02:16:43,200 --> 02:16:45,560 THANK YOU FOR THAT INTRODUCTION. 3156 02:16:45,560 --> 02:16:48,760 AND THANK YOU FOR HAVING ME HERE 3157 02:16:48,760 --> 02:16:48,960 TODAY. 3158 02:16:48,960 --> 02:16:50,200 I AM JILL WOOD AND I AM THE 3159 02:16:50,200 --> 02:16:53,200 C.E.O. OF PHOENIX NEST AND I AM 3160 02:16:53,200 --> 02:16:58,120 JONAH'S MOM AND MY SON JONAH HAS 3161 02:16:58,120 --> 02:17:01,040 TYPE C YOU MIGHT HEAR ME REFER 3162 02:17:01,040 --> 02:17:07,080 IT AS SAM C AND I'LL REFEX TO P 3163 02:17:07,080 --> 02:17:09,200 PHOENIX NEST AS PN. 3164 02:17:09,200 --> 02:17:13,240 I'LL GIVE YOU A BACKGROUND ON 3165 02:17:13,240 --> 02:17:15,360 HOW PN CAME TO BE AND WORKING 3166 02:17:15,360 --> 02:17:22,040 WITH THE NINDS TO SUPPORT 3167 02:17:22,040 --> 02:17:27,400 PHOENIX NEST PROGRAMS. 3168 02:17:27,400 --> 02:17:31,920 SO, MY OBLIGATORY STACKS AND 3169 02:17:31,920 --> 02:17:33,360 THERE ARE FOUR DIFFERENT SUB 3170 02:17:33,360 --> 02:17:36,080 TYPES CAUSED BY MUTATION FOR 3171 02:17:36,080 --> 02:17:38,920 DIFFERENT GENES AND THERE ARE 3172 02:17:38,920 --> 02:17:40,720 THE INCIDENTS RATES ARE 3173 02:17:40,720 --> 02:17:42,840 ARBITRARY NO ONE REALLY KNOWS 3174 02:17:42,840 --> 02:17:48,520 AND THE TRUE INCIDENTS OF 3175 02:17:48,520 --> 02:17:49,160 SANPHILLIPPEO, THEY'RE RARE AND 3176 02:17:49,160 --> 02:17:52,520 TYPE C AND D BEING THE RAREST 3177 02:17:52,520 --> 02:17:54,920 TOGETHER THEY'RE OCCUR 1/70,000 3178 02:17:54,920 --> 02:17:55,640 PATIENTS. 3179 02:17:55,640 --> 02:18:00,120 BUT WHAT WE DO KNOW ABOUT 3180 02:18:00,120 --> 02:18:01,920 SANFILIPPO IT'S OF A STORAGE 3181 02:18:01,920 --> 02:18:03,800 DISEASE BECAUSED BY A SINGLE 3182 02:18:03,800 --> 02:18:05,320 GENE DETECT AND NO APPROVED 3183 02:18:05,320 --> 02:18:14,680 TREATMENTS FOR THE SUB TYPES. 3184 02:18:14,680 --> 02:18:25,360 SAN PHILLIPPE OWE WE STARTED WIS 3185 02:18:27,240 --> 02:18:29,560 JUST BEGUN AND WE DID CLOSE OUT 3186 02:18:29,560 --> 02:18:32,160 AND SENT OUR FAMILIES AND 3187 02:18:32,160 --> 02:18:33,840 SUPPORTERS THE SANFILIPPO 3188 02:18:33,840 --> 02:18:37,600 FOUNDATION SO I CAN FOCUS ON 3189 02:18:37,600 --> 02:18:38,400 PHOENIX NEST. 3190 02:18:38,400 --> 02:18:40,280 WHEN JOE NA WAS DIAGNOSED WE 3191 02:18:40,280 --> 02:18:42,160 FOUND THERE WAS NO TREATMENTS 3192 02:18:42,160 --> 02:18:43,200 AND THERE WAS NO ONE EVEN 3193 02:18:43,200 --> 02:18:47,200 WORKING ON A GRAHAM FOR SAN SO 3194 02:18:47,200 --> 02:18:50,520 WE CREATED JJB AND FOUND OUR 3195 02:18:50,520 --> 02:18:53,200 RESEARCHES AND CREATED A MOUSE 3196 02:18:53,200 --> 02:18:55,240 MODEL AND JOINED FORCES WITH THE 3197 02:18:55,240 --> 02:18:56,240 FAMILIES AROUND THE WORLD. 3198 02:18:56,240 --> 02:18:58,240 TOGETHER WE CREATED A TYPE C 3199 02:18:58,240 --> 02:19:01,800 SPECIFIC CONSORTIUM HAND 3200 02:19:01,800 --> 02:19:03,080 H.A.N.D.S. AND PERFORMED PRE 3201 02:19:03,080 --> 02:19:04,280 CLINICAL RESEARCH AND FOUNDED 3202 02:19:04,280 --> 02:19:06,400 THE FIRST AND ONLY GLOBAL 3203 02:19:06,400 --> 02:19:16,920 PATIENT REGISTRY CONNECT MPS. 3204 02:19:18,760 --> 02:19:20,120 I DON'T HAVE TO TELL THE 3205 02:19:20,120 --> 02:19:21,800 FAMILIES JUST HOW HARD IT IS TO 3206 02:19:21,800 --> 02:19:23,200 START FROM SCRATCH BUT FOR THOSE 3207 02:19:23,200 --> 02:19:28,840 OF YOU THAT DON'T KNOW, DOING 3208 02:19:28,840 --> 02:19:31,800 THIS AND GOING THROUGH TH THIS 3209 02:19:31,800 --> 02:19:33,200 JOURNEY WILL BE THE HARDEST JOB 3210 02:19:33,200 --> 02:19:33,520 OF YOUR LIFE. 3211 02:19:33,520 --> 02:19:35,120 NOTHING IS HARDER THAN WATCHING 3212 02:19:35,120 --> 02:19:37,000 YOUR CHILD DIE. 3213 02:19:37,000 --> 02:19:38,240 I'VE WILL BE DOING THIS FOR 12 3214 02:19:38,240 --> 02:19:39,920 YEARS NOW AND IF THINGS GO 3215 02:19:39,920 --> 02:19:41,280 PERFECTLY, I MIGHT BE IN THE 3216 02:19:41,280 --> 02:19:43,280 CLINIC IN ANOTHER FOUR YEARS. 3217 02:19:43,280 --> 02:19:46,000 MY SON WILL BE 18 BY THEN AND I 3218 02:19:46,000 --> 02:19:48,200 KNOW THAT HE MIGHT NOT MAKE IT. 3219 02:19:48,200 --> 02:19:50,000 I DO KNOW THAT JONAH'S LEGACY 3220 02:19:50,000 --> 02:19:51,920 WILL LIVE ON IN THE LIVES OF 3221 02:19:51,920 --> 02:20:02,400 CHILDREN THAT HE HAS SAVED. 3222 02:20:03,800 --> 02:20:06,040 PHOENIX NEST IS A TWO-MAN SHOW 3223 02:20:06,040 --> 02:20:08,640 THAT'S MY PARTNER IN CRIME THERE 3224 02:20:08,640 --> 02:20:11,200 WHO I HAVE TO GIVE CREDIT FOR A 3225 02:20:11,200 --> 02:20:13,880 LOT OF OUR GRANT WRITING EFFORTS 3226 02:20:13,880 --> 02:20:16,920 TO AND I CREATED PHOENIX NEST 3227 02:20:16,920 --> 02:20:18,120 AFTER WATCHING THE TRIALS AND 3228 02:20:18,120 --> 02:20:21,640 THE TRIBULATIONS THAT THE SAM A 3229 02:20:21,640 --> 02:20:23,040 AND SAM B GROUPS WERE GOING 3230 02:20:23,040 --> 02:20:24,120 THROUGH WITH THEIR TREATMENTS 3231 02:20:24,120 --> 02:20:25,560 THEY HAD GONE TO THE CLINIC AND 3232 02:20:25,560 --> 02:20:29,480 JUST REALLY HAD NOT FOUND THE 3233 02:20:29,480 --> 02:20:30,880 CORRECT END POINTS AND GOTTEN 3234 02:20:30,880 --> 02:20:33,360 ACROSS THE FINISH LINE. 3235 02:20:33,360 --> 02:20:36,280 SO, I REALIZED THAT BECAUSE OF 3236 02:20:36,280 --> 02:20:44,560 THE RARITY OF S SANFILIPPO WE HA 3237 02:20:44,560 --> 02:20:46,320 SPONSOR PICK US UP AND I CO 3238 02:20:46,320 --> 02:20:48,520 FOUNDED PHOENIX NEST IN 2012 TO 3239 02:20:48,520 --> 02:20:49,920 HELP BRING THE TREATMENTS THAT 3240 02:20:49,920 --> 02:20:52,040 ARE NON PROFITS FUNDRAISED TO 3241 02:20:52,040 --> 02:20:54,960 THE CLINIC. 3242 02:20:54,960 --> 02:20:56,320 WE HAVE THREE DRUG PROGRAMS AND 3243 02:20:56,320 --> 02:20:58,040 TWO NATURAL HISTORY STUDIES IN 3244 02:20:58,040 --> 02:21:00,080 OUR TYPE LINE. 3245 02:21:00,080 --> 02:21:04,400 WHAT WE CAN'T DO IN-HOUSE WE USE 3246 02:21:04,400 --> 02:21:07,160 THE EXPERTISE OF OUR CONSULT 3247 02:21:07,160 --> 02:21:18,120 APARTCONSULTANTSAND CONTRACTORS. 3248 02:21:20,520 --> 02:21:24,400 SO SOME OF THE PROS AND CONS OF 3249 02:21:24,400 --> 02:21:26,320 WRITING SBR GRANTS ARE THE 3250 02:21:26,320 --> 02:21:31,120 PRIMARY FOCUS OF THE NIH GRANTS 3251 02:21:31,120 --> 02:21:35,400 THAT WE WRITE GRANTS FOR AND A 3252 02:21:35,400 --> 02:21:38,520 EMPLOYING FOR GRANTS IS 3253 02:21:38,520 --> 02:21:39,000 EXTREMELY ARDUOUS AND 3254 02:21:39,000 --> 02:21:39,320 HEARTBREAKING. 3255 02:21:39,320 --> 02:21:40,680 YOU PUT SO MUCH INTO WRITING 3256 02:21:40,680 --> 02:21:43,480 THESE GRANTS AND IT TACKS A LONG 3257 02:21:43,480 --> 02:21:43,840 TIME. 3258 02:21:43,840 --> 02:21:45,840 AND SOMETIMES YOU DON'T WIN. 3259 02:21:45,840 --> 02:21:47,280 ACTUALLY A LOT OF TIMES YOU 3260 02:21:47,280 --> 02:21:48,080 DON'T WIN. 3261 02:21:48,080 --> 02:21:49,880 IT'S HEARTBREAKING. 3262 02:21:49,880 --> 02:21:52,880 YOU CAN COME INTO A LOT MORE 3263 02:21:52,880 --> 02:21:54,800 PROBLEMS TOO WITH IF YOU ARE 3264 02:21:54,800 --> 02:21:57,200 FUNDING IS FROZEN AND YOU DIDN'T 3265 02:21:57,200 --> 02:21:59,680 MAKE A MILESTONE AND IF THERE'S 3266 02:21:59,680 --> 02:22:01,120 A GOVERNMENT SHUT DOWN, THERE'S 3267 02:22:01,120 --> 02:22:03,360 ALL KINDS OF THINGS THAT CAN 3268 02:22:03,360 --> 02:22:05,640 HAPPEN TO YOU ON THIS ROAD OF 3269 02:22:05,640 --> 02:22:08,400 BEING FUNDED BY NIH GRANTS BUT 3270 02:22:08,400 --> 02:22:10,040 FOR THOSE OF YOU WHO KNOW HOW 3271 02:22:10,040 --> 02:22:14,880 HARD IT IS TO DO GRASSROOTS 3272 02:22:14,880 --> 02:22:19,920 FUNDRAISING I TAKE THE WRITING 3273 02:22:19,920 --> 02:22:26,160 THE GRANTS ANY DAY. 3274 02:22:26,160 --> 02:22:27,920 ALSO, IN ORDER TO GET YOU TO THE 3275 02:22:27,920 --> 02:22:29,720 POINT WHERE YOU CAN WRITE OR WIN 3276 02:22:29,720 --> 02:22:31,280 A GRANT, YOU MUST GO THROUGH 3277 02:22:31,280 --> 02:22:36,040 THIS LONG LIST OF LONG-TO DO 3278 02:22:36,040 --> 02:22:39,000 LIST OF APPLYING AND REGISTERING 3279 02:22:39,000 --> 02:22:41,840 FOR ALL THESE INSTITUTIONS. 3280 02:22:41,840 --> 02:22:45,360 AND EACH REGISTRATION IS 3281 02:22:45,360 --> 02:22:47,200 CONTINGENT ON THE INSTITUTION 3282 02:22:47,200 --> 02:22:49,920 ACCEPT YOU IN THE PROCEEDING 3283 02:22:49,920 --> 02:22:51,760 LIST OF THINGS TO DO IF THAT 3284 02:22:51,760 --> 02:22:52,600 MAKES SENSE. 3285 02:22:52,600 --> 02:22:53,680 THEY ALL FLOW TOGETHER. 3286 02:22:53,680 --> 02:22:55,320 YOU CAN'T HAVE ONE WITHOUT 3287 02:22:55,320 --> 02:22:56,720 ANOTHER AND IT TAKES A REALLY 3288 02:22:56,720 --> 02:23:03,800 LONG TIME TO GO THROUGH ALL OF 3289 02:23:03,800 --> 02:23:04,320 THIS. 3290 02:23:04,320 --> 02:23:11,080 GIVE YOURSELF FOUR TO SIX 3291 02:23:11,080 --> 02:23:17,800 MONTHS. 3292 02:23:17,800 --> 02:23:19,280 THIS IS OUR GRANT HISTORY AND WE 3293 02:23:19,280 --> 02:23:24,560 GO FOR THE SBIR GRANTS AND WHICH 3294 02:23:24,560 --> 02:23:25,760 SIDE AM I ON? 3295 02:23:25,760 --> 02:23:27,400 THEY HAVE LONG COMPLICATED 3296 02:23:27,400 --> 02:23:29,920 NUMBERS HERE WHICH REPRESENT THE 3297 02:23:29,920 --> 02:23:39,320 TYPE OF GRANT THAT YOU'VE GONE 3298 02:23:39,320 --> 02:23:39,480 FOR. 3299 02:23:39,480 --> 02:23:45,680 AND ALMOST IN CLOSING HERE, HERE 3300 02:23:45,680 --> 02:23:46,640 IS MY FAVORITE SLIDE. 3301 02:23:46,640 --> 02:23:49,720 I KNOW IT'S SUPER BUSY HERE BUT 3302 02:23:49,720 --> 02:23:51,440 HERE IS AN OUTCOME OF A GRANT 3303 02:23:51,440 --> 02:23:54,320 WE'RE WORKING ON RIGHT NOW AND 3304 02:23:54,320 --> 02:23:55,640 CALLED FROM THE 3305 02:23:55,640 --> 02:23:57,840 COMMERCIALIZATION READINESS 3306 02:23:57,840 --> 02:23:59,200 PILOT PROGRAM GRANT WHICH I HOPE 3307 02:23:59,200 --> 02:24:00,960 IS NOT GOING TO JUST BE A PILOT 3308 02:24:00,960 --> 02:24:05,480 THAT IT WILL BE AROUND TO STAY. 3309 02:24:05,480 --> 02:24:08,320 THIS IS THE THIRD IN A SERIES OF 3310 02:24:08,320 --> 02:24:09,960 GRANTS AND THIS GRANT IS FOCUSED 3311 02:24:09,960 --> 02:24:12,800 ON A NATURAL HISTORY STUDY FOR 3312 02:24:12,800 --> 02:24:14,800 TYPE D, I THINK IN OUR LAST 3313 02:24:14,800 --> 02:24:17,720 CONVERSATION WE HAD A LOT OF 3314 02:24:17,720 --> 02:24:19,600 GOING ON AROUND NATURAL HISTORY 3315 02:24:19,600 --> 02:24:21,040 STUDIES AND THE PORT APPS OF 3316 02:24:21,040 --> 02:24:22,800 NATURAL HISTORY STUDIES AND I 3317 02:24:22,800 --> 02:24:24,600 CAN'T ECHO THIS ENOUGH, 3318 02:24:24,600 --> 02:24:28,960 ESPECIALLY FOR THE TALL RARE ULE 3319 02:24:28,960 --> 02:24:37,480 DISEASES WHERE THERE'S NOTHING. 3320 02:24:37,480 --> 02:24:42,320 IN THE SPACE OF SANFILIPPO AND I 3321 02:24:42,320 --> 02:24:43,720 CANNOT WAIT TO KICK IT OFF AND 3322 02:24:43,720 --> 02:24:47,720 SEE THIS GO LIVE AND IN ACTION. 3323 02:24:47,720 --> 02:24:49,160 THERE'S -- WE ARE THE LAST TYPE 3324 02:24:49,160 --> 02:24:51,760 C AND D ARE THE LAST TO BE GOING 3325 02:24:51,760 --> 02:24:52,360 TO THE CLIP I CAN HERE AND THAT 3326 02:24:52,360 --> 02:24:54,440 IS KIND OF A SILVER LINING WHEN 3327 02:24:54,440 --> 02:24:56,720 YOU HAVE ARE THE LAST, YOU GET 3328 02:24:56,720 --> 02:25:01,560 TO SEE WHERE THE OTHER SPONSORS 3329 02:25:01,560 --> 02:25:02,840 MAY HAVE NOT NECESSARILY MESSED 3330 02:25:02,840 --> 02:25:04,840 UP BECAUSE YOU NEVER KNOW WHEN 3331 02:25:04,840 --> 02:25:09,080 YOU START THERE BUT GAPS. 3332 02:25:09,080 --> 02:25:10,200 THIS NATURAL HISTORY STUDY WILL 3333 02:25:10,200 --> 02:25:11,480 FILL IN THE GAPS. 3334 02:25:11,480 --> 02:25:14,400 WE HAVE DESIGNED AN APP WHICH IS 3335 02:25:14,400 --> 02:25:15,840 EXACTLY WHAT IT SOUNDS LIKE. 3336 02:25:15,840 --> 02:25:19,200 AN APP YOU CAN DOWN LOAD ON TO 3337 02:25:19,200 --> 02:25:21,040 YOUR PHONE AND THE FAMILY WILL 3338 02:25:21,040 --> 02:25:24,680 BE GIVEN SEVERAL TASKS THAT ARE 3339 02:25:24,680 --> 02:25:25,960 SANFILIPPO-RELATED AND THESE 3340 02:25:25,960 --> 02:25:28,000 TASKS WILL ECHO WHAT IS 3341 02:25:28,000 --> 02:25:30,000 HAPPENING IN THE CLINIC BUT IN 3342 02:25:30,000 --> 02:25:34,720 THE CLINIC, YOU DON'T GET A GOOD 3343 02:25:34,720 --> 02:25:37,520 SENSE OF THE CHILDREN, WHERE THE 3344 02:25:37,520 --> 02:25:39,080 KIDS DO NOT COOPERATE AND THEY 3345 02:25:39,080 --> 02:25:40,600 WALK INTO THE CLINIC AND THEY 3346 02:25:40,600 --> 02:25:44,880 RUN FOR THE HILLS, THEY'RE OUT 3347 02:25:44,880 --> 02:25:45,680 THE DOOR. 3348 02:25:45,680 --> 02:25:47,040 THAT'S THE KIDS THAT CAN RUN. 3349 02:25:47,040 --> 02:25:48,760 WE'RE GOING TO HAVE FAMILIES GO 3350 02:25:48,760 --> 02:25:50,680 THROUGH AND DO IN A VERY 3351 02:25:50,680 --> 02:25:52,080 STANDARDIZED FORM SAT, 3352 02:25:52,080 --> 02:25:54,720 CONTROLLED FORMAT, GO THROUGH 3353 02:25:54,720 --> 02:25:57,800 AND VIDEOTAPE SEVERAL ACTIVITIES 3354 02:25:57,800 --> 02:25:58,760 THAT REVOLVE DAILY LIVING 3355 02:25:58,760 --> 02:26:02,400 ACTIVITIES AND WE ARE ALSO 3356 02:26:02,400 --> 02:26:03,920 DESIGNING OUR NEW CLINICAL 3357 02:26:03,920 --> 02:26:06,600 OUTCOME ASSESSMENTS AND I DON'T 3358 02:26:06,600 --> 02:26:07,880 KNOW IF WE'VE TALKED ABOUT 3359 02:26:07,880 --> 02:26:09,560 CLINICAL OUTCOME ASSESSMENTS IF 3360 02:26:09,560 --> 02:26:11,360 PEOPLE ARE AWARE OF WHAT CLIP 3361 02:26:11,360 --> 02:26:12,960 CAL OUTCOME ASSESSMENTS ARE BUT 3362 02:26:12,960 --> 02:26:14,840 IF YOU ARE STARTING OUT, I 3363 02:26:14,840 --> 02:26:19,720 REALLY ENCOURAGE YOU TO GET A 3364 02:26:19,720 --> 02:26:24,320 GOOD FEEL OF WH WHAT THESE 3365 02:26:24,320 --> 02:26:25,120 MEASUREMENT RIGHT SIDE AND WHAT 3366 02:26:25,120 --> 02:26:27,000 IS APPROPRIATE FOR OUR PATIENT 3367 02:26:27,000 --> 02:26:28,040 POPULATION. 3368 02:26:28,040 --> 02:26:30,560 I SEE ON THE CHAT PEOPLE ARE 3369 02:26:30,560 --> 02:26:31,840 ASKING ABOUT END POINTS AND THE 3370 02:26:31,840 --> 02:26:33,120 IMPORTANCE OF END POINTS AND 3371 02:26:33,120 --> 02:26:37,040 YEAH I CAN'T BEHIND THAT ENOUGH, 3372 02:26:37,040 --> 02:26:38,800 YOU ARE ON THE RIGHT TRACK 3373 02:26:38,800 --> 02:26:40,480 ASKING THOSE QUESTIONS AND IT'S 3374 02:26:40,480 --> 02:26:43,200 PERFECT TIMING THE FDA JUST CAME 3375 02:26:43,200 --> 02:26:46,720 OUT WITH A DRAFT GUIDANCE FOR 3376 02:26:46,720 --> 02:26:48,160 PATIENT-FOCUSED DRUG DEVELOPMENT 3377 02:26:48,160 --> 02:26:54,520 AND SELECTING AND DEVELOPING 3378 02:26:54,520 --> 02:26:56,320 CLINICAL OUTCOME ASSESSMENTS SO 3379 02:26:56,320 --> 02:26:57,440 THIS IS TIMELY FOR THIS 3380 02:26:57,440 --> 02:26:59,960 CONVERSATION AND I FEEL LIKE I 3381 02:26:59,960 --> 02:27:01,480 JUST SPED THROUGH 12 YEARS OF MY 3382 02:27:01,480 --> 02:27:03,320 LIFE IN EIGHT MINUTES AND I HOPE 3383 02:27:03,320 --> 02:27:13,600 IT WAS HELPFUL. 3384 02:27:14,000 --> 02:27:15,640 THE FAMILIES ARE THE FUEL THAT 3385 02:27:15,640 --> 02:27:18,840 KEEPS ME GOING AND TO OUR 3386 02:27:18,840 --> 02:27:20,480 WONDERFUL PROGRAM OFFICERS JILL 3387 02:27:20,480 --> 02:27:25,200 AND EMILY WHO YOU WILL MEET 3388 02:27:25,200 --> 02:27:25,400 NEXT. 3389 02:27:25,400 --> 02:27:26,360 THANK YOU AND I LOOK FORWARD TO 3390 02:27:26,360 --> 02:27:27,480 THE QUESTIONS AND THE ANSWERS. 3391 02:27:27,480 --> 02:27:29,520 >> IT'S AMAZING THAT YOU HAVE 3392 02:27:29,520 --> 02:27:31,640 BEEN ABLE TO ACCOMPLISH IT AND 3393 02:27:31,640 --> 02:27:33,320 IT'S CREDIBLE YOU HAVE ADDED 3394 02:27:33,320 --> 02:27:35,080 $10 MILLION OF FUND TO GO 3395 02:27:35,080 --> 02:27:37,680 SANFILIPPO RESEARCH AND 3396 02:27:37,680 --> 02:27:39,920 SUFFICIENT THIS CLINICAL 3397 02:27:39,920 --> 02:27:42,080 OUTCOMES CEASEMENT PROJECT FOR 3398 02:27:42,080 --> 02:27:44,440 NERLY THREE AND A HALF MILLION 3399 02:27:44,440 --> 02:27:46,080 DOLLARS AND IT'S INCREDIBLE. 3400 02:27:46,080 --> 02:27:47,840 AS JILL MENTIONED, THE WORK THAT 3401 02:27:47,840 --> 02:27:49,000 THEY'VE BEEN ABLE TO ACCOMPLISH 3402 02:27:49,000 --> 02:27:55,600 HAS BEEN FUNDED THROUGH THE 3403 02:27:55,600 --> 02:27:57,480 NINDS RESEARCH TRANSFER PROGRAM 3404 02:27:57,480 --> 02:27:59,360 AND THE PROGRAM DIRECTOR IN THE 3405 02:27:59,360 --> 02:28:00,640 DIVISION OF TRANSLATIONAL 3406 02:28:00,640 --> 02:28:06,920 RESEARCH AT NINDS IS Dr. EMILY 3407 02:28:06,920 --> 02:28:08,360 AND SHE JOINED FROM INDUSTRY 3408 02:28:08,360 --> 02:28:09,200 BYWAY OF THE DEPARTMENT OF 3409 02:28:09,200 --> 02:28:10,560 DEFENSE AND SHE'S A FOUND I 3410 02:28:10,560 --> 02:28:13,560 REMEMBER OF A SMALL BUSINESS 3411 02:28:13,560 --> 02:28:16,320 HERSELF SO SHE WILL TALK ABOUT 3412 02:28:16,320 --> 02:28:17,560 THE NIH SMALL BUSINESS PROGRAMS 3413 02:28:17,560 --> 02:28:21,360 WHICH HAPPEN TO BE THE LARGEST 3414 02:28:21,360 --> 02:28:31,800 SOURCE OF SPECIFICALLY TO 3415 02:28:32,040 --> 02:28:34,960 SUPPORT SMALL BUSINESS RESEARCH 3416 02:28:34,960 --> 02:28:37,880 AND DEVELOPMENT. 3417 02:28:37,880 --> 02:28:41,280 >> THANK YOU SO MUCH. 3418 02:28:41,280 --> 02:28:43,160 I THINK I HAVE CONTROL OVER THE 3419 02:28:43,160 --> 02:28:46,360 SLIDES AND I'LL WALK THROUGH AND 3420 02:28:46,360 --> 02:28:47,920 IT'S A PLEASURE TO FOLLOW OUR 3421 02:28:47,920 --> 02:28:49,160 PROGRAM THAT IS VERY PROUD OF 3422 02:28:49,160 --> 02:28:51,560 THE SUPPORTING HER AND HER 3423 02:28:51,560 --> 02:28:53,880 EFFORTS AND REALLY I THINK SHE 3424 02:28:53,880 --> 02:28:55,560 HAS BEEN SO SUCCESSFUL WITH 3425 02:28:55,560 --> 02:28:56,880 SMALL BUSINESS FUNDING AND SO 3426 02:28:56,880 --> 02:29:01,000 TODAY I'M GOING TO TALK A LITTLE 3427 02:29:01,000 --> 02:29:05,760 BIT ABOUT WHAT IS IT LIKE TO 3428 02:29:05,760 --> 02:29:08,000 APPLY FOR BRAVE SOULS WHO WANT 3429 02:29:08,000 --> 02:29:09,320 TO FOLLOW JILL DOWN THE PATH OF 3430 02:29:09,320 --> 02:29:10,720 STARTING A SMALL BUSINESS OF 3431 02:29:10,720 --> 02:29:11,880 THERAPEUTIC DEVELOPMENT AND 3432 02:29:11,880 --> 02:29:13,320 EDUCATE THE COMMUNITY, THE 3433 02:29:13,320 --> 02:29:16,560 NON-PROFIT COMMUNITY ABOUT WHAT 3434 02:29:16,560 --> 02:29:17,520 SMALL BUSINESS FUNDING GRANTS 3435 02:29:17,520 --> 02:29:19,880 ARE LIKE WHAT'S OUT THERE AND 3436 02:29:19,880 --> 02:29:22,120 SOME WAYS THAT NON PROFITS CAN 3437 02:29:22,120 --> 02:29:24,240 HELP THESE EARLY STABLE SMALL 3438 02:29:24,240 --> 02:29:30,640 BUSINESSES AND ACHIEVE THEIR 3439 02:29:30,640 --> 02:29:31,240 GOALS. 3440 02:29:31,240 --> 02:29:32,560 OK, LET'S DO IT. 3441 02:29:32,560 --> 02:29:36,880 SO WHAT IS SBIR AND STTR THIS 3442 02:29:36,880 --> 02:29:38,360 ACRONYM WE'RE REFERRING TO THIS 3443 02:29:38,360 --> 02:29:40,360 REFERS TO CONGRESSIONAL REVIEW 3444 02:29:40,360 --> 02:29:41,200 DATED SMALL BUSINESS PROGRAMS 3445 02:29:41,200 --> 02:29:43,080 AND THE SMALL BUSINESS 3446 02:29:43,080 --> 02:29:43,880 INNOVATION RESEARCH PROGRAMS AND 3447 02:29:43,880 --> 02:29:46,920 THE SMALL BUSINESS TECHNOLOGY 3448 02:29:46,920 --> 02:29:47,560 TRANSFER PROGRAM. 3449 02:29:47,560 --> 02:29:49,680 BOTH OF THESE PROGRAMS REQUIRED 3450 02:29:49,680 --> 02:29:56,040 THAT FEDERAL FUNDERS LIKE NIH 3451 02:29:56,040 --> 02:29:57,440 SEND THEIR FUNDING DOLLARS ON 3452 02:29:57,440 --> 02:30:00,400 SMALL BUSINESSES AND THERE ARE 3453 02:30:00,400 --> 02:30:01,840 SOME SMALL DIS TANKION BETWEEN 3454 02:30:01,840 --> 02:30:04,560 WHAT MAKES AN SBIR VERSUS AN 3455 02:30:04,560 --> 02:30:06,200 STTR IT HAS TO DO WITH 3456 02:30:06,200 --> 02:30:06,840 PARTNERING WITH THE UNIVERSITY 3457 02:30:06,840 --> 02:30:10,200 AND I'M NOT GOING TO DO INTO IT 3458 02:30:10,200 --> 02:30:11,840 TODAY AND IT'S NOT RELEVANT TO 3459 02:30:11,840 --> 02:30:13,000 UNDERSTAND THE BASICS BUT IF YOU 3460 02:30:13,000 --> 02:30:14,200 ARE INTERESTED IN A EMPLOYING 3461 02:30:14,200 --> 02:30:18,680 FOR THIS FUNDING I'LL WALK 3462 02:30:18,680 --> 02:30:21,160 THROUGH WHICH MECHANISMS MAKE 3463 02:30:21,160 --> 02:30:22,480 THE MOST SENSE. 3464 02:30:22,480 --> 02:30:23,280 THE PORTAGE THING TO UNDERSTAND 3465 02:30:23,280 --> 02:30:28,040 THESE ARE GRANTS AND THEY'RE NOT 3466 02:30:28,040 --> 02:30:29,680 LOANS SO YOU DO NOT NEED TO PAY 3467 02:30:29,680 --> 02:30:32,160 THIS MONEY BACK. 3468 02:30:32,160 --> 02:30:33,280 IT'S GRANT FUNDING SO YOU ARE 3469 02:30:33,280 --> 02:30:35,840 NOT LOSING ANY PERCENT OF 3470 02:30:35,840 --> 02:30:39,000 OWNERSHIP OR EQUITY IN YOUR 3471 02:30:39,000 --> 02:30:41,560 COMPANY AND SMALL BUSINESS 3472 02:30:41,560 --> 02:30:43,000 AWARDS, ESPECIALLY I WITH SAY 3473 02:30:43,000 --> 02:30:45,560 NIH AWARDS WHICH GO THROUGH IT 3474 02:30:45,560 --> 02:30:49,320 RIGOROUS PEER REVIEW PROCESS ARE 3475 02:30:49,320 --> 02:30:51,360 RECOGNIZED AS BEING A GOLD STAR 3476 02:30:51,360 --> 02:30:52,840 ON YOUR COMPANY AND IT CAN BE 3477 02:30:52,840 --> 02:30:59,840 USED TO HELP LEVERAGE ADDITIONAL 3478 02:30:59,840 --> 02:31:02,280 WE SUPPORT THE VERY EARLY STAGE 3479 02:31:02,280 --> 02:31:04,200 OF RESEARCH TYPICALLY MAYBE RYE 3480 02:31:04,200 --> 02:31:06,160 AFTER A LICENSING AGREEMENT 3481 02:31:06,160 --> 02:31:07,440 HAPPENED WITH THE UNIVERSITY OR 3482 02:31:07,440 --> 02:31:11,000 A A VERY EARLY PROTOTYPING STAGE 3483 02:31:11,000 --> 02:31:13,000 AND WE'LL FUND THROUGH EARLY 3484 02:31:13,000 --> 02:31:14,760 STAGE CLINICAL TRAILS AND REALLY 3485 02:31:14,760 --> 02:31:18,320 OUR GOAL IS TO HELP DERISK THAT 3486 02:31:18,320 --> 02:31:19,960 TECHNOLOGY AND TO A POINT WHERE 3487 02:31:19,960 --> 02:31:23,600 IT'S EITHER READY FOR PRIVATE 3488 02:31:23,600 --> 02:31:25,760 FUNDING AND MUCH MORE LARGER 3489 02:31:25,760 --> 02:31:27,480 DOLLAR AMOUNT THAN WE'RE ABLE TO 3490 02:31:27,480 --> 02:31:30,160 PROVIDE FOR GRANT FUNDING OR FOR 3491 02:31:30,160 --> 02:31:33,160 SOME TECHNOLOGIES LIKE AS SAY OR 3492 02:31:33,160 --> 02:31:34,360 RESEARCH TOOLS THEY MAY GET TO 3493 02:31:34,360 --> 02:31:37,200 THAT POINT OF BEING COMMERCIAL 3494 02:31:37,200 --> 02:31:41,440 READY THROUGH GRANT FUNDING SO 3495 02:31:41,440 --> 02:31:43,000 WHAT DOES IT TAKE TO BE ELIGIBLE 3496 02:31:43,000 --> 02:31:45,840 FOR SBIR AND STTR FUNDING, WE 3497 02:31:45,840 --> 02:31:48,400 HAVE TO BE ABLE FORMED AND 3498 02:31:48,400 --> 02:31:50,960 REGISTERED U.S.-BASED SMALL 3499 02:31:50,960 --> 02:31:55,520 BUSINESS AND IT HAS TO BE A FOR 3500 02:31:55,520 --> 02:32:02,800 PROFIT BUSINESS AND IT'S WISE TO 3501 02:32:02,800 --> 02:32:03,880 START THOSE FOUR MONTHS BEFORE 3502 02:32:03,880 --> 02:32:07,360 YOU PLAN ON APPLYING BECAUSE YOU 3503 02:32:07,360 --> 02:32:08,680 ARE BUSINESS HAS TO BE 3504 02:32:08,680 --> 02:32:12,120 INCORPORATE AND REGISTERED 3505 02:32:12,120 --> 02:32:14,040 BEFORE YOU APPLY. 3506 02:32:14,040 --> 02:32:16,680 THE COMPANY NEEDS TO BE LESS 3507 02:32:16,680 --> 02:32:20,440 THAN 500 PLOY SKIS THIS CRITERIA 3508 02:32:20,440 --> 02:32:24,480 IS NOT HARD THE COMPANIES ARE 3509 02:32:24,480 --> 02:32:26,120 MAYBE FIVE OR SO PEOPLE AND IT'S 3510 02:32:26,120 --> 02:32:34,720 PROBABLY ABOUT AVERAGE AND IT 3511 02:32:34,720 --> 02:32:36,000 NEEDS TO BE U.S. INDIVIDUAL 3512 02:32:36,000 --> 02:32:36,480 OWNED. 3513 02:32:36,480 --> 02:32:37,920 MULTIPLE U.S. INDIVIDUALS AND IT 3514 02:32:37,920 --> 02:32:42,000 NEEDS TO BE MAJORITY OWNED BY 3515 02:32:42,000 --> 02:32:42,720 U.S. INDIVIDUALS. 3516 02:32:42,720 --> 02:32:44,000 THERE'S A LOT OF LEGAL EASE 3517 02:32:44,000 --> 02:32:47,840 BEHIND THIS DEFINITION AND I'M 3518 02:32:47,840 --> 02:32:50,200 NOT GOING INTO THIS TIME BUT 3519 02:32:50,200 --> 02:32:51,160 THIS INFORMATION IS PUBLIC AND 3520 02:32:51,160 --> 02:32:52,840 I'M HAPPY TO WALK THROUGH ANY 3521 02:32:52,840 --> 02:32:56,880 QUESTIONS FUR NOT QUITE SURE 3522 02:32:56,880 --> 02:33:02,160 WHETHER YOU ARE -- IT'S GOING TO 3523 02:33:02,160 --> 02:33:04,600 BE UP TO THE BUSINESS TO CERTIFY 3524 02:33:04,600 --> 02:33:05,680 THAT YOU ARE ELIGIBLE FOR SMALL 3525 02:33:05,680 --> 02:33:08,720 BUSINESS FUNDING AT THE TIME 3526 02:33:08,720 --> 02:33:13,520 THAW RECEIVE YOUR AWARD. 3527 02:33:13,520 --> 02:33:15,720 SO AT NINDS THE AMOUNT OF 3528 02:33:15,720 --> 02:33:16,920 FUNDING DEDICATE TODAY SMALL 3529 02:33:16,920 --> 02:33:21,800 BUSINESS IS OVER $80 MILLION A 3530 02:33:21,800 --> 02:33:25,680 YEAR AND IT SUPPORTS ALL OF THE 3531 02:33:25,680 --> 02:33:27,040 INDICATIONS WITHIN THE MISSION 3532 02:33:27,040 --> 02:33:29,560 SPACE AND SO THAT IT INCLUDES 3533 02:33:29,560 --> 02:33:33,440 LARGE INDICATIONS LIKE STROKE 3534 02:33:33,440 --> 02:33:34,720 AND ALSO MANY OF THE RARE 3535 02:33:34,720 --> 02:33:35,800 DISORDERS THAT ARE REPRESENTED 3536 02:33:35,800 --> 02:33:41,880 HERE TODAY AND WHICH PHOENIX 3537 02:33:41,880 --> 02:33:44,240 NEST IS WORKING TO SUPPORT. 3538 02:33:44,240 --> 02:33:46,360 WE HAVE MODALITIES OF 3539 02:33:46,360 --> 02:33:47,160 TECHNOLOGIES SO ABOUT PROBABLY 3540 02:33:47,160 --> 02:33:52,560 OVER HALF OF OUR PORTFOLIO IS 3541 02:33:52,560 --> 02:33:54,840 SMALL MOLECULES OR ANNA RARE OF 3542 02:33:54,840 --> 02:33:56,120 DIFFERENT BIOLOGICAL APPROACHES 3543 02:33:56,120 --> 02:34:01,040 TO GENE THERAPY, THEY WILL 3544 02:34:01,040 --> 02:34:04,720 THERAPY AND ET CETERA A REALLY 3545 02:34:04,720 --> 02:34:08,600 BROAD SCOPE THERE BUT WE FUND 3546 02:34:08,600 --> 02:34:09,920 DIAGNOSTICS, RESEARCH TOOLS, 3547 02:34:09,920 --> 02:34:13,400 BIOMARKERS, DEVICES, ANYTHING 3548 02:34:13,400 --> 02:34:14,760 THAT WILL MAKE ITS WAY THROUGH 3549 02:34:14,760 --> 02:34:15,800 THE COMMERCIALIZATION PATH TO BE 3550 02:34:15,800 --> 02:34:17,720 A PUBLIC THAT WILL HELP BENEFIT 3551 02:34:17,720 --> 02:34:19,560 THE PATIENTS AND RESEARCH 3552 02:34:19,560 --> 02:34:25,200 COMMUNITIES THAT NINDS SUPPORTS. 3553 02:34:25,200 --> 02:34:26,840 THIS STAGE OF RESEARCH CAN BE 3554 02:34:26,840 --> 02:34:28,880 BROAD AS WELL SO WE SUPPORT THE 3555 02:34:28,880 --> 02:34:34,800 VERY EARLY STAGE WORK IN THE 3556 02:34:34,800 --> 02:34:36,480 TRANSLATION ALDO MAIN THROUGH 3557 02:34:36,480 --> 02:34:38,320 IND TO BE READY FOR CLINICAL 3558 02:34:38,320 --> 02:34:43,240 TRIALS IN THE FUND PHASE 1 AND 3559 02:34:43,240 --> 02:34:46,160 EVEN PHASE 2 CLINICAL TRIALS 3560 02:34:46,160 --> 02:34:56,480 UNDER OUR FUNDING. 3561 02:36:14,080 --> 02:36:16,880 >> THERE'S A NEED TO DO FOREIGN 3562 02:36:16,880 --> 02:36:18,680 BASED WORK AND IT CAN'T BE UNDER 3563 02:36:18,680 --> 02:36:21,400 THE CLASS OF A SMALL BUSINESS OR 3564 02:36:21,400 --> 02:36:31,600 SBIR AWARD. 3565 02:36:32,520 --> 02:36:33,760 IT'S A FEE THAT GOES TO THE 3566 02:36:33,760 --> 02:36:34,960 COMPANY AND IT CAN BE USED 3567 02:36:34,960 --> 02:36:36,360 HOWEVER YOU LIKE BUT IT'S 3568 02:36:36,360 --> 02:36:39,200 LIMITED AND I MENTIONED THIS 3569 02:36:39,200 --> 02:36:42,280 BECAUSE ONE WAY WE FOUND THAT 3570 02:36:42,280 --> 02:36:43,600 SMALL BUSINESSES REALLY 3571 02:36:43,600 --> 02:36:44,880 STRUGGLING TO DEVELOP THEIR 3572 02:36:44,880 --> 02:36:48,680 THERAPEUTICS IN THE EARLY STAGES 3573 02:36:48,680 --> 02:36:50,520 CAN BENEFIT FROM ENGAGEMENT WITH 3574 02:36:50,520 --> 02:36:52,440 NON PROFITS IS SMALL AMOUNTS OF 3575 02:36:52,440 --> 02:36:54,760 FUNDING THE COMPANIES CAN BE BUT 3576 02:36:54,760 --> 02:36:57,320 NOT GETTING THEIR PATENT FEES OR 3577 02:36:57,320 --> 02:36:59,440 THEIR LICENSE FEES OR THEIR 3578 02:36:59,440 --> 02:37:01,320 OTHER EXPENSES AND THESE ARE 3579 02:37:01,320 --> 02:37:04,440 ESSENTIALS TO SECURING THE IP 3580 02:37:04,440 --> 02:37:05,760 AND FOR THEIR TECHNOLOGY BUT 3581 02:37:05,760 --> 02:37:07,760 THEY REALLY STRUGGLED TO FIND 3582 02:37:07,760 --> 02:37:12,440 THAT FUNDING SO I'LL JUST 3583 02:37:12,440 --> 02:37:13,600 MENTION THAT. 3584 02:37:13,600 --> 02:37:15,240 AFTER YOU SUBMIT THAT 3585 02:37:15,240 --> 02:37:16,680 APPLICATION IN AND AS JOE 3586 02:37:16,680 --> 02:37:18,280 MENTIONED I'M NOT GOING TO SHY 3587 02:37:18,280 --> 02:37:23,640 AWAY FROM IT IT'S AN OWNER US 3588 02:37:23,640 --> 02:37:25,240 APPLICATION THEY'RE 90 TO 100 3589 02:37:25,240 --> 02:37:26,600 PAGES AND THEY'RE INTENTION AND 3590 02:37:26,600 --> 02:37:28,040 AFTER YOU SUBMIT THAT IT'S GOING 3591 02:37:28,040 --> 02:37:30,560 TO GO THROUGH PEER REVIEW AND 3592 02:37:30,560 --> 02:37:34,480 THAT PEER REVIEW IS SIMILAR TO 3593 02:37:34,480 --> 02:37:36,560 NIH TYPICAL NIH RESEARCH 3594 02:37:36,560 --> 02:37:38,120 ACADEMIC RESEARCH PER REVIEW AND 3595 02:37:38,120 --> 02:37:40,480 THESE PANELS DO INCLUDE MEMBERS 3596 02:37:40,480 --> 02:37:42,400 OF INDUSTRY AND CLINICIANS AND 3597 02:37:42,400 --> 02:37:43,680 OTHER PEOPLE WITH TRANSLATION 3598 02:37:43,680 --> 02:37:47,640 ALEX PER TEASE. 3599 02:37:47,640 --> 02:37:48,560 THE STANDARD THINGS HAVE YOU ON 3600 02:37:48,560 --> 02:37:49,840 ANY RESEARCH ARE EVALUATED WITH 3601 02:37:49,840 --> 02:37:53,320 THE ADDITIONAL AN ALLEY 3602 02:37:53,320 --> 02:37:54,040 EVALUATION OF THE 3603 02:37:54,040 --> 02:37:56,040 COMMERCIALIZATION POTENTIAL. 3604 02:37:56,040 --> 02:38:01,920 PRODUCT AND I WANT TO STRESS 3605 02:38:01,920 --> 02:38:02,800 HERE THAT IT'S A COMPETITIVE 3606 02:38:02,800 --> 02:38:05,360 PROGRAM AND FUNDING PERCENTAGES 3607 02:38:05,360 --> 02:38:06,640 HAVE HOVERED BETWEEN 15% TO 20% 3608 02:38:06,640 --> 02:38:07,960 AND I WANT TO ACKNOWLEDGE THAT A 3609 02:38:07,960 --> 02:38:10,880 LOT OF TIMES YOU ARE COMPETING 3610 02:38:10,880 --> 02:38:12,560 AGAINST SMALL BUT ESTABLISHED 3611 02:38:12,560 --> 02:38:20,880 BIOTECH COMPANIES AND SO 3612 02:38:20,880 --> 02:38:22,080 BRIDGING IN A TEAM AND YOU WANT 3613 02:38:22,080 --> 02:38:23,640 TO SHOW THAT YOU ARE A CAPABLE 3614 02:38:23,640 --> 02:38:27,440 COMPANY AND YOU CAN TAKE THIS 3615 02:38:27,440 --> 02:38:31,680 FORWARD TO THE POINT WHERE IT 3616 02:38:31,680 --> 02:38:41,360 COULD BE FURTHER WHERE GROUPS 3617 02:38:41,360 --> 02:38:42,320 CAN REALLY THOUGH SUPPORT SMALL 3618 02:38:42,320 --> 02:38:43,640 BUSINESSES IS PROVIDING THOSE 3619 02:38:43,640 --> 02:38:45,760 LETTERS OF SUPPORT AND IF YOU 3620 02:38:45,760 --> 02:38:46,560 CAN PROVIDE LETTERS OF SUPPORT 3621 02:38:46,560 --> 02:38:48,440 FROM PATIENTS AND FAMILIES 3622 02:38:48,440 --> 02:38:50,520 THEMSELVES, FROM CLINICIANS AND 3623 02:38:50,520 --> 02:38:57,240 WHO WORKED WITH AND OR IF YOU 3624 02:38:57,240 --> 02:38:58,200 HAVE EARL STAGE CONVERSATIONS 3625 02:38:58,200 --> 02:38:59,720 WITH PARTNERS HAVING THAT 3626 02:38:59,720 --> 02:39:01,240 SUPPORT OF THEM, IT DOESN'T HAVE 3627 02:39:01,240 --> 02:39:03,880 TO BE A COMMITMENT BUT STATING 3628 02:39:03,880 --> 02:39:06,000 THEIR INTEREST SHOWS THAT 3629 02:39:06,000 --> 02:39:07,000 COMMERCIALIZATION POTENTIAL OF 3630 02:39:07,000 --> 02:39:08,600 YOUR TECHNOLOGY. 3631 02:39:08,600 --> 02:39:12,280 AND ANOTHER ONE IN THIS ONE IS 3632 02:39:12,280 --> 02:39:22,800 REALLY HARD AS JILL MENTIONED 3633 02:39:23,760 --> 02:39:25,800 IT'S NOT UNCOMMON FOR 3634 02:39:25,800 --> 02:39:27,160 APPLICATIONS NOT TO BE PURCHASED 3635 02:39:27,160 --> 02:39:29,680 ON THEIR FIRST TRY YOU WILL GET 3636 02:39:29,680 --> 02:39:40,200 A LIST OF COMMENTS WE'LL GET A 3637 02:39:43,480 --> 02:39:48,640 LOT OF FEEDBACK AND I OR YOUR 3638 02:39:48,640 --> 02:39:55,960 PROGRAM OFFICER WE CAN GO 3639 02:39:55,960 --> 02:39:57,960 THROUGH HOW WE CAN STRENGTHEN 3640 02:39:57,960 --> 02:40:00,640 THE PROPOSE AM AND IMPROVE THIS 3641 02:40:00,640 --> 02:40:05,640 TO GET TO A FUNDABLE RANGE. 3642 02:40:05,640 --> 02:40:09,080 I ALSO WANT TO NOTE OUR PROGRAM 3643 02:40:09,080 --> 02:40:10,480 DOES HAVE ADDITIONAL SUPPORT 3644 02:40:10,480 --> 02:40:12,360 PROGRAMS FOR NEW APPLICANTS 3645 02:40:12,360 --> 02:40:15,080 SPECIFICALLY AND THE APPLICANT 3646 02:40:15,080 --> 02:40:16,400 ASSISTANCE PROGRAM IS INTENDED 3647 02:40:16,400 --> 02:40:18,160 TO PROVIDE GRANT-WRITING SUPPORT 3648 02:40:18,160 --> 02:40:21,240 FOR A PHASE 1SBIR TO ANY COMPANY 3649 02:40:21,240 --> 02:40:25,600 WHO HAS NEVER BEFORE RECEIVED 3650 02:40:25,600 --> 02:40:29,960 NIH, SBIR OR STTR FUNDING AND IN 3651 02:40:29,960 --> 02:40:31,520 BEING, WE HIGHLY ENCOURAGE 3652 02:40:31,520 --> 02:40:33,160 DIVERSE APPLICATIONS TO A PLOY 3653 02:40:33,160 --> 02:40:34,600 TO THIS PROGRAM DIVERSITY AND 3654 02:40:34,600 --> 02:40:38,880 SMALL BUSINESS INCLUDES 3655 02:40:38,880 --> 02:40:41,400 WOMEN-LED COMPANIES. 3656 02:40:41,400 --> 02:40:42,600 IF YOU ARE INTRODUCED IN 3657 02:40:42,600 --> 02:40:43,800 PURSUING SMALL BUSINESS FUNDING 3658 02:40:43,800 --> 02:40:45,080 AND STARTING YOUR COMPANY AND 3659 02:40:45,080 --> 02:40:46,360 PURSUING THIS PATH WOULD BE TO 3660 02:40:46,360 --> 02:40:56,800 REACH OUT TO OUR TEAM IT'S 3661 02:40:58,040 --> 02:40:59,320 HELPFUL TO HAVE A DESCRIPTION OF 3662 02:40:59,320 --> 02:41:00,360 THE PROJECT YOU ARE THINKING 3663 02:41:00,360 --> 02:41:02,120 ABOUT EVEN IF IT'S A DRAFT OR 3664 02:41:02,120 --> 02:41:05,520 NOT CLEAR SO WE CAN SORT OF GET 3665 02:41:05,520 --> 02:41:07,520 A SENSE OF WHERE YOUR READINESS 3666 02:41:07,520 --> 02:41:08,800 IS AND WHAT WE SHOULD RECOMMEND 3667 02:41:08,800 --> 02:41:11,840 BUT WE'RE HAPPY TO TALK WITH YOU 3668 02:41:11,840 --> 02:41:13,040 AND OFTEN TIMES A LOT OF THE 3669 02:41:13,040 --> 02:41:15,360 QUESTIONS ARE VERY SPECIFIC SO 3670 02:41:15,360 --> 02:41:17,240 IF IT'S BEST TO JUST GET ON A 3671 02:41:17,240 --> 02:41:19,920 CUL AND TALK THROUGH THAT. 3672 02:41:19,920 --> 02:41:21,520 I'M GOING TO PAUSE THERE AND I'M 3673 02:41:21,520 --> 02:41:28,200 HAPPY TO ANSWER ANY QUESTIONS. 3674 02:41:28,200 --> 02:41:30,160 >> THANK YOU, EMILY. 3675 02:41:30,160 --> 02:41:36,200 THAT WAS REALLY HELPFUL 3676 02:41:36,200 --> 02:41:36,440 OVERVIEW. 3677 02:41:36,440 --> 02:41:39,960 OUR NEXT SPEAKER IS KEN FROM 3678 02:41:39,960 --> 02:41:40,800 SHANEER AND LUBITZ. 3679 02:41:40,800 --> 02:41:46,000 IT'S A FIRM THAT REPRESENTS TAX 3680 02:41:46,000 --> 02:41:46,480 INCENTIVE ORGANIZATIONS. 3681 02:41:46,480 --> 02:41:49,720 WHETHER YOU ARE A PATIENT 3682 02:41:49,720 --> 02:41:51,280 ADVOCACY GROUP CONTEMPLATING 3683 02:41:51,280 --> 02:41:52,240 STARTING A COMPANY OR YOU ARE 3684 02:41:52,240 --> 02:41:55,520 THINKING OF WORKING WITH AN 3685 02:41:55,520 --> 02:41:58,000 ACADEMIC CENTER OR EVEN JUST 3686 02:41:58,000 --> 02:42:00,720 THINKING ABOUT LIKE THE ABILITY 3687 02:42:00,720 --> 02:42:04,920 TO SUB LICENSE RESOURCES OR AS 3688 02:42:04,920 --> 02:42:06,680 SAYS YOU HELPED TO FUND LIKE 3689 02:42:06,680 --> 02:42:07,920 THEY WERE DISCUSS NORTH THE 3690 02:42:07,920 --> 02:42:10,760 PREVIOUS PANEL, YOU WILL WANT TO 3691 02:42:10,760 --> 02:42:14,040 BE MINDFUL ABOUT PROJECTING YOUR 3692 02:42:14,040 --> 02:42:17,120 501C3 STATUS AND SO KEN WORKS 3693 02:42:17,120 --> 02:42:20,040 WITH GROUPS AND HE HAS SERVED AS 3694 02:42:20,040 --> 02:42:26,480 COUNCIL TO CYSTIC FIBROSIS IN 3695 02:42:26,480 --> 02:42:31,160 THEIR TRANSACTION WITH -- HE IS 3696 02:42:31,160 --> 02:42:32,920 OUTSIDE COUNCIL TO NON-PROFIT 3697 02:42:32,920 --> 02:42:35,920 GROUPS ADVISING ON A WIDE RANGE 3698 02:42:35,920 --> 02:42:36,520 OF ISSUES. 3699 02:42:36,520 --> 02:42:39,960 ARE YOU READY? 3700 02:42:39,960 --> 02:42:50,240 >> YOU ARE MUTED. 3701 02:42:52,440 --> 02:42:54,640 >> ALL RIGHT, I'M UNMUTED. 3702 02:42:54,640 --> 02:42:56,760 MAYBE I WOULD BE MORE 3703 02:42:56,760 --> 02:42:57,800 INTERESTING MUTED. 3704 02:42:57,800 --> 02:42:58,440 WHO KNOWS. 3705 02:42:58,440 --> 02:43:05,960 THANK YOU FOR HAVING ME. 3706 02:43:05,960 --> 02:43:07,960 I REPRESENT ABOUT 80 DIFFERENT 3707 02:43:07,960 --> 02:43:10,800 DISEASE RELATED CHARITIES AND 3708 02:43:10,800 --> 02:43:17,200 CYSTIC FIBROSIS IS ONE OF THEM, 3709 02:43:17,200 --> 02:43:22,920 MICHAEL J. FOX -- A BUNCH. 3710 02:43:22,920 --> 02:43:24,960 SOME BIG AND SOME SMALL AND MOST 3711 02:43:24,960 --> 02:43:27,320 GIVE AWARDS TO COMPANIES TO 3712 02:43:27,320 --> 02:43:30,680 DEVELOP PRODUCTS SO THE PURPOSE 3713 02:43:30,680 --> 02:43:33,520 TODAY IS TO TALK ABOUT WHAT KIND 3714 02:43:33,520 --> 02:43:37,920 OF AGREEMENTS THAT THEY, THE 3715 02:43:37,920 --> 02:43:41,560 CHARITIES EXPECT FROM THE 3716 02:43:41,560 --> 02:43:45,560 APPLICANTS AND WHAT FORMS THEY 3717 02:43:45,560 --> 02:43:51,000 WILL TAKE SO LET ME SAY I'VE 3718 02:43:51,000 --> 02:43:51,960 DONE THE CYSTIC FOUNDATION AND 3719 02:43:51,960 --> 02:43:52,840 EVERYONE TALKS ABOUT IT AS THE 3720 02:43:52,840 --> 02:43:57,040 MOTHER OF ALL VENTURE 3721 02:43:57,040 --> 02:43:58,360 PHILANTHROPY AND WHEN 3722 02:43:58,360 --> 02:44:00,480 TRANSACTIONS THAT WAS FIRST 3723 02:44:00,480 --> 02:44:03,560 PIECE WAS IN 2002 AND THE 3724 02:44:03,560 --> 02:44:05,000 COMPANY CALLED BIO SCIENCE AND 3725 02:44:05,000 --> 02:44:13,760 THEY MADE THE FIRST AND WE DID 3726 02:44:13,760 --> 02:44:14,360 SUPPLEMENTAL FUNDING WITH VER 3727 02:44:14,360 --> 02:44:17,960 TEXT THAT ADDED UP TO 3728 02:44:17,960 --> 02:44:22,080 $125 MILLION OR SO AND 3729 02:44:22,080 --> 02:44:26,400 ULTIMATELY IT'S ALL PRODUCTS AND 3730 02:44:26,400 --> 02:44:28,760 CYSTIC FIBROSIS FOUNDATION SOLD 3731 02:44:28,760 --> 02:44:30,640 IT'S ROYALTY INTEREST UNDER 3732 02:44:30,640 --> 02:44:32,640 THOSE AGREEMENTS AND REAPED 3733 02:44:32,640 --> 02:44:35,240 ABOUT FOUR AND A HALF BILLION 3734 02:44:35,240 --> 02:44:38,960 DOLLARS OF FUNDING, REALLY AN 3735 02:44:38,960 --> 02:44:41,560 EXCITING AND SHOULD HAPPEN TO 3736 02:44:41,560 --> 02:44:43,840 ALL OF US-TYPE EXPERIENCE AND 3737 02:44:43,840 --> 02:44:45,120 ULTIMATELY THAT MONEY WILL ALLOW 3738 02:44:45,120 --> 02:44:48,960 THEM TO CURE THE DISEASE. 3739 02:44:48,960 --> 02:44:51,000 AND I THINK I PROBABLY HAVE DONE 3740 02:44:51,000 --> 02:44:53,840 FIVE TO 600 OF THESE 3741 02:44:53,840 --> 02:44:56,880 TRANSACTIONS AND ONE AND MAYBE 3742 02:44:56,880 --> 02:44:59,920 THE TOTAL IN MAYBE COMING UP 3743 02:44:59,920 --> 02:45:02,440 WITH A BILLION DOLLARS OF 3744 02:45:02,440 --> 02:45:03,840 FUNDING WITH YOU DON'T GET 3745 02:45:03,840 --> 02:45:07,120 SCARED BECAUSE A LOT OF THEM ARE 3746 02:45:07,120 --> 02:45:08,240 SMALL, SMALL START UP COMPANIES 3747 02:45:08,240 --> 02:45:11,280 AND THAT'S WHAT I WANT TO FOCUS 3748 02:45:11,280 --> 02:45:13,200 ON TODAY BECAUSE THE FUNDING IN 3749 02:45:13,200 --> 02:45:17,200 THOSE TRANSACTIONS CAN GO FROM 3750 02:45:17,200 --> 02:45:20,040 100,000 TO A MILLION AND I 3751 02:45:20,040 --> 02:45:24,480 WANTED TO TALK ABOUT THE KINDS 3752 02:45:24,480 --> 02:45:26,920 OF AGREEMENTS THAT YOU WILL 3753 02:45:26,920 --> 02:45:27,560 ENTER INTO. 3754 02:45:27,560 --> 02:45:34,600 SO LET ME START WITH THE FIRST 3755 02:45:34,600 --> 02:45:44,680 ONE. 3756 02:45:45,720 --> 02:45:47,280 AT THE BEGINNING, LEADING THE 3757 02:45:47,280 --> 02:45:51,520 PACK, THE THOUGHT IT COULD BE A 3758 02:45:51,520 --> 02:45:56,480 CONFLICT 20 INVEST IN STOCK AND 3759 02:45:56,480 --> 02:45:56,720 EQUITY. 3760 02:45:56,720 --> 02:45:58,240 SO MOST OF THE EARLY 3761 02:45:58,240 --> 02:46:00,720 TRANSACTIONS AND A BUNCH OF THEM 3762 02:46:00,720 --> 02:46:02,600 STILL ARE BASED ON ROYALTIES AND 3763 02:46:02,600 --> 02:46:05,720 THE ROYALTIES FOR SMALL 3764 02:46:05,720 --> 02:46:08,080 TRANSACTIONS ARE USUALLY NOT A 3765 02:46:08,080 --> 02:46:11,080 PERCENTAGE OF NET SALES BUT THEY 3766 02:46:11,080 --> 02:46:13,960 ARE A MULTIPLE OF THE AWARD AND 3767 02:46:13,960 --> 02:46:18,440 SO IF AT WARD IS $100,000 AND 3768 02:46:18,440 --> 02:46:23,320 THE DRUG A APPROVED, THE CHARITY 3769 02:46:23,320 --> 02:46:32,520 WOULD GET BACK THREE TO 6X 3770 02:46:32,520 --> 02:46:37,280 CALLED ROYALTY OR UPON FIRST 3771 02:46:37,280 --> 02:46:40,640 COMMERCIAL SALE OF THE PRODUCT 3772 02:46:40,640 --> 02:46:42,880 AND N ARE POTENTIAL MILESTONES 3773 02:46:42,880 --> 02:46:46,280 WHERE THE CHARITY PARTICIPATES 3774 02:46:46,280 --> 02:46:49,960 WITH THE COMPANY IN SUCCESS AT 3775 02:46:49,960 --> 02:46:52,720 CERTAIN LEVELS SO IF AGGREGATE 3776 02:46:52,720 --> 02:46:55,320 SALES REACH WHAT IS DEFINED IN 3777 02:46:55,320 --> 02:46:58,520 THE AGREEMENTS AS A SUCCESS 3778 02:46:58,520 --> 02:47:00,720 LEVEL, THEN THE CHARITY GETS AN 3779 02:47:00,720 --> 02:47:05,120 EXTRA ONE TO TWO SO THOSE ARE 3780 02:47:05,120 --> 02:47:06,160 NICE TO THINK ABOUT. 3781 02:47:06,160 --> 02:47:11,200 NICE TO THINK ABOUT APPROVALS 3782 02:47:11,200 --> 02:47:12,720 AND MOST OF TIME ON THESE 3783 02:47:12,720 --> 02:47:20,720 TRANSACTIONS THE PAYMENTS OCCUR 3784 02:47:20,720 --> 02:47:22,480 AT EXITS. 3785 02:47:22,480 --> 02:47:28,560 THAT IS WHEN THE SMALL COMPANY 3786 02:47:28,560 --> 02:47:31,360 SELLS ITSELF AND LICENSE IS THE 3787 02:47:31,360 --> 02:47:34,680 PRODUCT SELLS ITSELF TO A LARGER 3788 02:47:34,680 --> 02:47:36,000 PHARMA THAT HAS THE A LOT TO 3789 02:47:36,000 --> 02:47:38,360 TAKE A PRODUCT TO MARKET. 3790 02:47:38,360 --> 02:47:42,080 SO THE WAY THAT WORKS IS THE 3791 02:47:42,080 --> 02:47:48,080 CHARITY IN SUCH CASES GETS A 3792 02:47:48,080 --> 02:47:49,520 PERCENTAGE OF THE CONSIDERATION 3793 02:47:49,520 --> 02:47:50,920 RECEIVED BY THE COMPANY UP TO 3794 02:47:50,920 --> 02:47:52,840 THE ROYALTY CAP WHICH WE TALKED 3795 02:47:52,840 --> 02:47:55,560 ABOUT WHICH WAS THE GREATEST 3796 02:47:55,560 --> 02:47:55,800 SUCCESS. 3797 02:47:55,800 --> 02:48:00,160 AND THE CHARITY IS THEN PAID OFF 3798 02:48:00,160 --> 02:48:01,840 ITS AMOUNT AND THE COMPANY 3799 02:48:01,840 --> 02:48:04,560 HOPEFULLY TAKES THE PRODUCT TO 3800 02:48:04,560 --> 02:48:04,800 MARKET. 3801 02:48:04,800 --> 02:48:06,920 AND I THINK THE PRIOR PANEL I 3802 02:48:06,920 --> 02:48:10,520 SAT IN FOR THE TAIL END OF THE 3803 02:48:10,520 --> 02:48:13,320 PRIOR PANEL, I ALSO INCLUDE WHAT 3804 02:48:13,320 --> 02:48:15,000 I CALL AN INTERRUPTION LICENSE. 3805 02:48:15,000 --> 02:48:17,200 THERE'S ALWAYS THE WORRY AND 3806 02:48:17,200 --> 02:48:20,480 I'LL TELL YOU THE ONE DAY A 3807 02:48:20,480 --> 02:48:23,880 LONG, LONG TIME AGO NOW, AFTER 3808 02:48:23,880 --> 02:48:34,440 THE FIRST VER TEXT AND SO WHAT I 3809 02:48:37,960 --> 02:48:44,760 PUT INTO ALL THESE AGREEMENTS 3810 02:48:44,760 --> 02:48:52,320 NOW, THE COMPANY STOPS WORKING 3811 02:48:52,320 --> 02:48:54,800 AND A PARTICULAR OF THE FUND 3812 02:48:54,800 --> 02:49:02,360 THAT COMPOUND OR DIAGNOSTIC OR 3813 02:49:02,360 --> 02:49:06,680 DEVICE AND THE LICENSE OCCURS 3814 02:49:06,680 --> 02:49:08,280 AND THE COMPANY AND THE CHARITY 3815 02:49:08,280 --> 02:49:09,720 TAKES OVER AND BRINGS IT TO 3816 02:49:09,720 --> 02:49:10,120 MARKET. 3817 02:49:10,120 --> 02:49:13,160 FROM A COMPANY'S STANDPOINT, ONE 3818 02:49:13,160 --> 02:49:14,480 CAN, THERE CAN BE A LOT OF 3819 02:49:14,480 --> 02:49:16,640 REASONS WHY THE COMPANY STOPS. 3820 02:49:16,640 --> 02:49:18,600 THEY RUN OUT OF MONEY, ET 3821 02:49:18,600 --> 02:49:18,920 CETERA. 3822 02:49:18,920 --> 02:49:22,240 AND I THINK THE CHARITIES ARE 3823 02:49:22,240 --> 02:49:27,280 SAYING IF THIS HAPPENS TO YOU, 3824 02:49:27,280 --> 02:49:29,560 WE'LL SHARE REVENUE WITH REVENUE 3825 02:49:29,560 --> 02:49:33,880 WITH YOU AT A CERTAIN SELF AND 3826 02:49:33,880 --> 02:49:39,080 ROYALTIES I WOULD SAY OF THE 15 3827 02:49:39,080 --> 02:49:40,840 YEARS OR SO AND THEY'VE BEEN 3828 02:49:40,840 --> 02:49:43,720 DOING THIS 20 YEARS, 20 YEARS. 3829 02:49:43,720 --> 02:49:45,600 AND ROYALTY BASED AGREEMENTS 3830 02:49:45,600 --> 02:49:48,960 WERE BUY AND LARGE THE MAJORITY 3831 02:49:48,960 --> 02:49:54,560 OF THE FIRST 10 YEARS OR SO AND 3832 02:49:54,560 --> 02:50:05,040 THEN CHARITIES THEY CAN BE 3833 02:50:30,800 --> 02:50:31,600 DIRECT EQUITY. 3834 02:50:31,600 --> 02:50:33,200 THIS SIDE IS OUT OF ORDER BUT 3835 02:50:33,200 --> 02:50:35,440 THEY CAN BE DIRECTLY INEQUITY 3836 02:50:35,440 --> 02:50:40,680 AND I'M GOING TO SWITCH TO -- 3837 02:50:40,680 --> 02:50:41,960 THEY'RE OUT OF ORDER SO I'M 3838 02:50:41,960 --> 02:50:52,520 GOING TO SWITCH TO THE NEXT ONE. 3839 02:51:01,680 --> 02:51:03,640 IT ANTICIPATES A LARGER FUNDING 3840 02:51:03,640 --> 02:51:05,400 FOR THROW YEARS AND THEY TAKE 3841 02:51:05,400 --> 02:51:06,800 THE TAKE THE FORM OF A SAFE 3842 02:51:06,800 --> 02:51:08,880 WHICH IS THE SIMPLE AGREEMENT 3843 02:51:08,880 --> 02:51:19,400 FOR EQUITY OR CONVERTIBLE AND 3844 02:51:21,040 --> 02:51:23,160 WHEN THE COMPANY DOES ITS LARGER 3845 02:51:23,160 --> 02:51:24,480 FUNDING AND THE CONVERSION RATE 3846 02:51:24,480 --> 02:51:28,720 IS AT A 10% TO 30% DISCOUNT OVER 3847 02:51:28,720 --> 02:51:33,280 WHAT THE LARGER FUNDING PEOPLE 3848 02:51:33,280 --> 02:51:37,480 WHO PARTICIPATED IN THE LARGER 3849 02:51:37,480 --> 02:51:39,600 FUNDING PAY AND THE MAJOR 3850 02:51:39,600 --> 02:51:40,880 DIFFERENCE BETWEEN A SAFE AND 3851 02:51:40,880 --> 02:51:42,920 CONVERTIBLE NOTICE, THE 3852 02:51:42,920 --> 02:51:44,680 CONVERTIBLE NOTE BEARS INTEREST 3853 02:51:44,680 --> 02:51:46,840 USUALLY AT THE SIX TO 12% 3854 02:51:46,840 --> 02:51:50,000 DEPENDING UPON THE NEGOTIATIONS 3855 02:51:50,000 --> 02:51:54,760 AND THE SAFE DOES NOT I'M NOT 3856 02:51:54,760 --> 02:51:57,680 CRAZY ABOUT SAVES FOR THAT 3857 02:51:57,680 --> 02:51:59,120 REASON BECAUSE IT'S UNFAIR, I 3858 02:51:59,120 --> 02:52:00,400 THINK, FOR THE CHARITIES THAT 3859 02:52:00,400 --> 02:52:02,160 HAVE THE MONEY OUT THERE WITHOUT 3860 02:52:02,160 --> 02:52:04,960 HAVING AN INTEREST ON THEM. 3861 02:52:04,960 --> 02:52:09,840 SO, EQUITY AGREEMENTS THAT 3862 02:52:09,840 --> 02:52:14,880 RELATE TO OFTEN HAVE A SIDE LIST 3863 02:52:14,880 --> 02:52:18,520 SO THE CHARITIES ARE INVESTING 3864 02:52:18,520 --> 02:52:23,000 IN A COMPANY THAT MAY HAVE MORE 3865 02:52:23,000 --> 02:52:25,960 THAN ONE PARTICULAR PRODUCT AND 3866 02:52:25,960 --> 02:52:28,920 WHILE THE CHARITY IS ONLY 3867 02:52:28,920 --> 02:52:30,240 FOCUSING ON A PRODUCT THAT 3868 02:52:30,240 --> 02:52:33,840 RELATES TO ITS DISEASE SO THE 3869 02:52:33,840 --> 02:52:35,960 SIDE AGREEMENT REQUIRES THAT THE 3870 02:52:35,960 --> 02:52:39,760 MONEY THAT THE CHARITY PUTS IN 3871 02:52:39,760 --> 02:52:45,360 IS FOCUSED AND USED PRIMARILY 3872 02:52:45,360 --> 02:52:49,240 FOR THE PARTICULAR DISEASE SO 3873 02:52:49,240 --> 02:52:51,000 FOR EXAMPLE, IF I'M REPRESENTING 3874 02:52:51,000 --> 02:52:54,240 NATIONAL KIDNEY WHICH IS A 3875 02:52:54,240 --> 02:52:57,920 REALLY GOOD GROUP THAT DOES 3876 02:52:57,920 --> 02:53:02,640 EQUITY FUNDING AND LET'S SAY IT 3877 02:53:02,640 --> 02:53:06,400 INVESTS UP $200,000, IT WOULD 3878 02:53:06,400 --> 02:53:09,640 REQUIRE THAT THE COMPANY USE ITS 3879 02:53:09,640 --> 02:53:16,320 MONEY SOLELY FOR THE PARTICULAR 3880 02:53:16,320 --> 02:53:20,200 THERAPY THAT THE NATIONAL IS 3881 02:53:20,200 --> 02:53:21,680 FOCUSING ONMENT A COUPLE OTHER 3882 02:53:21,680 --> 02:53:28,840 REASONS YOU WOULD FOCUS ON USE 3883 02:53:28,840 --> 02:53:31,000 OF SIDE AGREEMENT WOULD BE MOST 3884 02:53:31,000 --> 02:53:31,600 FAVORED NATION AGREEMENT SAYS 3885 02:53:31,600 --> 02:53:36,280 THE CHARITY IS GETTING THE BEST 3886 02:53:36,280 --> 02:53:40,240 DEALS AND SOMETIMES THE CHARITY 3887 02:53:40,240 --> 02:53:42,160 LIKES AN OBSERVER SEAT ON THE 3888 02:53:42,160 --> 02:53:49,480 BOARD OF THE DIRECTORS AND THE 3889 02:53:49,480 --> 02:53:56,120 SIDE AGREEMENT REQUIRES THAT AND 3890 02:53:56,120 --> 02:53:59,160 IF NEITHER OF THOSE POSSIBLE, 3891 02:53:59,160 --> 02:54:05,280 THE CHARITY REQUIRES REPORTING 3892 02:54:05,280 --> 02:54:15,760 AND IT'S PARTICULAR BECAUSE 3893 02:54:21,800 --> 02:54:23,840 THEY'RE TAKING A RISK AND 3894 02:54:23,840 --> 02:54:27,040 INVESTING AT THE EARLIEST STAGES 3895 02:54:27,040 --> 02:54:29,200 AND THEY MAY WISH TO INVEST 3896 02:54:29,200 --> 02:54:31,320 SUBSEQUENTLY AND YOU MAY WISH TO 3897 02:54:31,320 --> 02:54:34,640 HAVE THEM INVEST SUBSEQUENTLY. 3898 02:54:34,640 --> 02:54:41,000 SO I'M GOING TO SWITCH TO THE 3899 02:54:41,000 --> 02:54:51,560 LAST SLIDE AND SO SOMETIMES THE 3900 02:54:52,080 --> 02:54:54,200 CHARITY IS COMING IN AT A 3901 02:54:54,200 --> 02:54:56,920 FUNDING ROUTE AND SO THERE WON'T 3902 02:54:56,920 --> 02:55:02,760 BE THIS INTERVENING SAVOR A 3903 02:55:02,760 --> 02:55:06,840 CONVERTIBLE NOTE THEY'LL INVEST 3904 02:55:06,840 --> 02:55:14,000 DIRECTLY AND THERE WILL BE 3905 02:55:14,000 --> 02:55:16,960 SHAREHOLDER AGREEMENTS THAT YOU 3906 02:55:16,960 --> 02:55:19,480 THE COMPANY WILL BE ASKED TO 3907 02:55:19,480 --> 02:55:22,080 PREPARE FOR THE CHARITY DOCUMENT 3908 02:55:22,080 --> 02:55:22,960 REGISTRATION RIGHTS AND SALES 3909 02:55:22,960 --> 02:55:24,800 AND TRANSFER RESTRICTIONS AND ET 3910 02:55:24,800 --> 02:55:27,640 CETERA, ET CETERA. 3911 02:55:27,640 --> 02:55:28,960 AND INCLUDING RIGHT TO 3912 02:55:28,960 --> 02:55:31,200 PARTICIPATE IN FUTURE ROUNDS. 3913 02:55:31,200 --> 02:55:35,640 AND SO THESE TOO ARE OFTEN THE 3914 02:55:35,640 --> 02:55:38,920 CHARITY OFTEN REQUIRES THE SIDE 3915 02:55:38,920 --> 02:55:40,200 AGREEMENT TO MAKE SURE THAT IT'S 3916 02:55:40,200 --> 02:55:43,680 FUNDING WAS USED FOR THE TARGET 3917 02:55:43,680 --> 02:55:44,080 PRODUCT. 3918 02:55:44,080 --> 02:55:45,000 SO THAT'S ALL. 3919 02:55:45,000 --> 02:55:50,600 THERE'S BEEN A COUPLE QUIZ ABOUT 3920 02:55:50,600 --> 02:55:51,800 THE SLIDES. 3921 02:55:51,800 --> 02:55:55,600 THEY'RE AVAILABLE AND I'M HAPPY 3922 02:55:55,600 --> 02:55:57,160 TO SMALL COMPANIES WISH TO CALL 3923 02:55:57,160 --> 02:55:59,560 ME TO CHAT WITH THEM ABOUT WHAT 3924 02:55:59,560 --> 02:56:04,080 THEIR AGREEMENTS SHOULD SAY. 3925 02:56:04,080 --> 02:56:08,800 SAY JUST WANT TO SAY I SPENT A 3926 02:56:08,800 --> 02:56:11,400 35 YEAR CAREER AND BILLING LAW 3927 02:56:11,400 --> 02:56:16,880 AND REPRESENTING COMPANIES AND 3928 02:56:16,880 --> 02:56:19,480 THAT WAS FINE AND I ENJOYED IT 3929 02:56:19,480 --> 02:56:23,040 AND STARTED A FIRM WITH A FEW 3930 02:56:23,040 --> 02:56:25,120 FRIENDS THAT GROUP TO 300 AND ET 3931 02:56:25,120 --> 02:56:28,120 CETERA BUT THIS LAST 10 YEARS OF 3932 02:56:28,120 --> 02:56:30,840 WORKING WITH DATA AND CHARITIES 3933 02:56:30,840 --> 02:56:36,360 AND FUNDING THERAPIES AND 3934 02:56:36,360 --> 02:56:39,400 DEVICES IN DIAGNOSTICS FOR 3935 02:56:39,400 --> 02:56:41,080 DISEASE CHARITIES HAVE BEEN THE 3936 02:56:41,080 --> 02:56:47,840 BEST 10 YEARS OF MY PRACTICE. 3937 02:56:47,840 --> 02:56:54,680 THE DAY WE FOUND OUT THAT THE 3938 02:56:54,680 --> 02:56:57,720 FIRST CF DRUG WORKED AND GOING 3939 02:56:57,720 --> 02:56:59,520 TO MARKET, I'M NOT A SCIENTIST 3940 02:56:59,520 --> 02:57:01,400 SO I COULDN'T SAY I HAD CREDIT 3941 02:57:01,400 --> 02:57:03,880 FOR IT BUT IT WAS A GREAT POINT 3942 02:57:03,880 --> 02:57:05,600 IN MY CAREER. 3943 02:57:05,600 --> 02:57:11,600 SO THANK YO FOR HAVING ME. 3944 02:57:11,600 --> 02:57:12,240 >> THANK YOU SO MUCH. 3945 02:57:12,240 --> 02:57:13,800 WE HAVE A FEW MINUTES WE CAN 3946 02:57:13,800 --> 02:57:15,040 TAKE SOME QUESTIONS RIGHT NOW IF 3947 02:57:15,040 --> 02:57:17,360 ANYBODY HAS ANY QUESTIONS YOU 3948 02:57:17,360 --> 02:57:19,040 ARE WELCOME TO JUST TYPE THEM 3949 02:57:19,040 --> 02:57:29,320 INTO THE CHAT. 3950 02:57:38,160 --> 02:57:43,080 >> I CAN BE REACHED AT THE 3951 02:57:43,080 --> 02:57:43,320 WEBSITE. 3952 02:57:43,320 --> 02:57:46,560 >> THANK YOU. 3953 02:57:46,560 --> 02:57:51,960 >> KEN, HOW OFTEN DO YOU SEE A 3954 02:57:51,960 --> 02:57:55,160 SITUATION SORT OF LIKE PHOENIX 3955 02:57:55,160 --> 02:57:55,360 NEST? 3956 02:57:55,360 --> 02:57:59,840 WHERE A PATIENT ADD CO KIT SAYS 3957 02:57:59,840 --> 02:58:01,080 I'M GOING TO START A COMPANY. 3958 02:58:01,080 --> 02:58:04,320 >> I SEE IT FAIRLY OFTEN AND SO 3959 02:58:04,320 --> 02:58:06,320 WE DON'T -- WE GENERALLY 3960 02:58:06,320 --> 02:58:10,080 REPRESENT THE FOUNDATION NOT THE 3961 02:58:10,080 --> 02:58:11,120 COMPANY. 3962 02:58:11,120 --> 02:58:12,960 WE GET INVOLVED SOMETIMES 3963 02:58:12,960 --> 02:58:14,680 THERE'S STILL ACADEMIC GRANTS. 3964 02:58:14,680 --> 02:58:19,680 THAT GO WAY BACK TO THE EARLY 3965 02:58:19,680 --> 02:58:24,000 2000s AND THE FIRST QUESTION 3966 02:58:24,000 --> 02:58:26,040 CYSTIC FIBROSIS ASKED ME, NOT 3967 02:58:26,040 --> 02:58:27,680 THE FIRST QUESTION BECAUSE I 3968 02:58:27,680 --> 02:58:29,840 REPRESENTED YEARS BEFORE BUT ONE 3969 02:58:29,840 --> 02:58:32,160 OF THE KEY QUESTIONS WAS COULD 3970 02:58:32,160 --> 02:58:33,280 IT FUND INDUSTRY? 3971 02:58:33,280 --> 02:58:35,760 COULD IT FUND THE COMPANY? 3972 02:58:35,760 --> 02:58:38,560 AND UP TO THEN, MOST FOUNDATIONS 3973 02:58:38,560 --> 02:58:39,880 WERE THOUGHT THEY COULD ONLY 3974 02:58:39,880 --> 02:58:41,400 MAKE ACADEMIC GRANTS. 3975 02:58:41,400 --> 02:58:44,480 THEY DIDN'T THINK THEY COULD 3976 02:58:44,480 --> 02:58:47,360 FUND COMPANIES AND SO WE GOT 3977 02:58:47,360 --> 02:58:51,600 PAST THAT ISSUE EARLY ON AND SEE 3978 02:58:51,600 --> 02:58:56,200 HOW IT STARTED FUNDING COMPANIES 3979 02:58:56,200 --> 02:59:00,400 AND NOW SOMEONE CAME UP WITH THE 3980 02:59:00,400 --> 02:59:03,480 MAIN WHICH WAS QUITE CLEVER AND 3981 02:59:03,480 --> 02:59:06,720 IT'S BECOME APP AREA THAT THE 3982 02:59:06,720 --> 02:59:11,920 FOUNDATIONS HAVE FOCUSED ON. 3983 02:59:11,920 --> 02:59:14,640 >> WE HAVE A COUPLE QUESTIONS. 3984 02:59:14,640 --> 02:59:16,400 HOW LARGE DOES A CHARITY NEED TO 3985 02:59:16,400 --> 02:59:18,520 BE TO MAKE THESE TYPES OF 3986 02:59:18,520 --> 02:59:20,880 ATTEMPTS FEASIBLE? 3987 02:59:20,880 --> 02:59:23,080 >> REALLY SMALL. 3988 02:59:23,080 --> 02:59:28,080 I DON'T WANT TO PRETEND THAT 3989 02:59:28,080 --> 02:59:34,760 WITH THE FUNDING WAS 3990 02:59:34,760 --> 02:59:35,040 $25 MILLION. 3991 02:59:35,040 --> 02:59:36,120 THERE'S NOT GOING TO BE MANY OF 3992 02:59:36,120 --> 02:59:37,480 THOSE AND THE MILLION DOLLARS OR 3993 02:59:37,480 --> 02:59:42,360 SO OF FUNDING MOST OF THEM IF 3994 02:59:42,360 --> 02:59:51,800 YOU TOOK AWAY THE BIG BIG 3995 02:59:51,800 --> 02:59:53,840 AMOUNTS, EVEN PFIZER AND FUND 3996 02:59:53,840 --> 02:59:56,520 LILLY, ET CETERA AND THE REASON 3997 02:59:56,520 --> 02:59:58,160 FOR THAT IS THERE'S A GUY WOULD 3998 02:59:58,160 --> 03:00:03,720 WORKS FOR THEM AND WHO WANTS TO 3999 03:00:03,720 --> 03:00:05,000 GO TO HIS WINDOWS AND SAY I HAVE 4000 03:00:05,000 --> 03:00:08,480 THIS IDEA FOR A PROGRAM AND I 4001 03:00:08,480 --> 03:00:10,480 CAN GET FUNDING FOR A CHEETAH 4002 03:00:10,480 --> 03:00:12,160 THAT HELPS HIM JUMP START HIS 4003 03:00:12,160 --> 03:00:14,560 OWN PROJECT AND MOST OF THE 4004 03:00:14,560 --> 03:00:19,400 THESE FUNDINGS TAKE NATIONAL 4005 03:00:19,400 --> 03:00:21,600 KIDNEY WHICH I'VE BEEN DOING SIX 4006 03:00:21,600 --> 03:00:25,680 OR SEVEN DEALS FOR IT AND THOSE 4007 03:00:25,680 --> 03:00:31,000 ARE BETWEEN 100,000 AND 250 AND 4008 03:00:31,000 --> 03:00:34,000 I'LL DONE DEALS AS LOW AS 50,000 4009 03:00:34,000 --> 03:00:36,400 AND LET ME JUST SAY I ENJOYS 4010 03:00:36,400 --> 03:00:41,160 THOSE JUST AS MUCH AND I HOPE 4011 03:00:41,160 --> 03:00:48,040 THEY'RE SUCCESSFUL AND YOU KNOW, 4012 03:00:48,040 --> 03:00:56,200 JILL'S STORY WAS FABULOUS. 4013 03:00:56,200 --> 03:01:03,000 THERE ARE SMALLER DEALS WITH 4014 03:01:03,000 --> 03:01:04,320 SMALL START UP COMPANIES THAT 4015 03:01:04,320 --> 03:01:07,320 WORK FOR BOTH PARTS. 4016 03:01:07,320 --> 03:01:09,600 >> ARE THERE ANY TYPES OF 4017 03:01:09,600 --> 03:01:10,240 ININDUCE TREMENDOUS INVESTMENTS 4018 03:01:10,240 --> 03:01:12,840 THAT YOU DO NOT RECOMMEND? 4019 03:01:12,840 --> 03:01:16,880 WHO ORGANIZATIONS ENGAGE WITH? 4020 03:01:16,880 --> 03:01:17,480 >> 4021 03:01:17,480 --> 03:01:20,720 >> WELL, I DON'T THINK I -- 4022 03:01:20,720 --> 03:01:28,720 OBVIOUSLY, FROM THE CHARITY 4023 03:01:28,720 --> 03:01:30,640 STANDPOINT, THEY'RE LOOKING FOR 4024 03:01:30,640 --> 03:01:36,000 THERAPY OR DIAGNOSTIC OR ADVICE 4025 03:01:36,000 --> 03:01:37,400 THAT IS GREAT FOR THE PATIENTS 4026 03:01:37,400 --> 03:01:40,160 THAT IS NOT AVAILABLE AND YOU 4027 03:01:40,160 --> 03:01:41,600 ARE OBVIOUSLY LOOKING FOR A 4028 03:01:41,600 --> 03:01:44,080 COMPANY THAT'S NOT GOING TO GO 4029 03:01:44,080 --> 03:01:45,680 BROKE USE YOUR MONEY AND THEN 4030 03:01:45,680 --> 03:01:52,120 GOT TO GO GET WHATEVER PROGRESS 4031 03:01:52,120 --> 03:01:56,360 WILL BE LOST BY THE FACT THEY GO 4032 03:01:56,360 --> 03:02:04,360 BANKRUPT SO SOMETIMES WHEN WE 4033 03:02:04,360 --> 03:02:06,160 LOOK AT THE BALANCE SHEET 4034 03:02:06,160 --> 03:02:07,720 THEY'RE THIN AND THEY'RE THIN SO 4035 03:02:07,720 --> 03:02:10,920 I WOULD SAY IT'S MAINLY WITH 4036 03:02:10,920 --> 03:02:13,640 PEOPLE WHO HAVE A GOOD IDEA WHO 4037 03:02:13,640 --> 03:02:19,360 HAVE SOME EXPERIENCE AND 4038 03:02:19,360 --> 03:02:22,920 CREDIBILITY AND ALL KINDS OF 4039 03:02:22,920 --> 03:02:27,280 THINGS AND. 4040 03:02:27,280 --> 03:02:31,800 >> ARE THERE ANY RESOURCES FOR 4041 03:02:31,800 --> 03:02:33,560 PATIENT AT VOW KIDS OR ACADEMIC 4042 03:02:33,560 --> 03:02:38,000 INVESTIGATORS CAN LEARN MORE 4043 03:02:38,000 --> 03:02:38,560 ABOUT A EMPLOYING FOR SMALL 4044 03:02:38,560 --> 03:02:39,080 BUSINESS GRANTS? 4045 03:02:39,080 --> 03:02:43,560 >> YEAH, ABSOLUTELY SO I CAN PUT 4046 03:02:43,560 --> 03:02:47,680 INTO THE CHATBOX THE SEED AT NIH 4047 03:02:47,680 --> 03:02:49,000 WEBSITE AND THIS IS SMALL 4048 03:02:49,000 --> 03:02:51,320 BUSINESS AND SUPPORT OFFICE FOR 4049 03:02:51,320 --> 03:02:52,400 ALL OF NIH. 4050 03:02:52,400 --> 03:02:54,440 THEIR WEBSITE GOES THROUGH 4051 03:02:54,440 --> 03:02:57,480 ELIGIBILITY AND REQUIRED 4052 03:02:57,480 --> 03:02:59,080 REGISTRATION AND FAQs AND HELP 4053 03:02:59,080 --> 03:03:00,680 POINT YOU TO THE RIGHT FUNDING 4054 03:03:00,680 --> 03:03:02,160 TICKETS TO THAT'S A GOOD PLACE 4055 03:03:02,160 --> 03:03:03,320 TO RAISE BACKGROUND TO 4056 03:03:03,320 --> 03:03:06,960 UNDERSTAND MORE ABOUT THE 4057 03:03:06,960 --> 03:03:08,840 PROGRAM AND IF IT'S SOMETHING 4058 03:03:08,840 --> 03:03:11,920 YOU WANT TO PURSUE YOU WOULD 4059 03:03:11,920 --> 03:03:13,760 ADVISE HAVING A DISCUSSION WITH 4060 03:03:13,760 --> 03:03:17,600 A PROGRAM OFFICER AND MYSELF OR 4061 03:03:17,600 --> 03:03:20,400 CONTACTS CAN DIRECT YOU TO THE 4062 03:03:20,400 --> 03:03:21,360 RIGHT PROGRAM OFFICER WE MAKE 4063 03:03:21,360 --> 03:03:22,720 SURE THAT YOU ARE TALK TO GO THE 4064 03:03:22,720 --> 03:03:28,120 PERSON THAT YOU WOULD BE WORKING 4065 03:03:28,120 --> 03:03:30,480 IF YOU APPLY AND WE ASK FOR THAT 4066 03:03:30,480 --> 03:03:32,080 PROJECT DESCRIPTION BUT WE'RE 4067 03:03:32,080 --> 03:03:33,080 HAPPY TO TALK ABOUT THE 4068 03:03:33,080 --> 03:03:34,120 SPECIFICS OF YOUR APPLICATION 4069 03:03:34,120 --> 03:03:43,280 WHAT IT LOOKS LIKE MY DECISION 4070 03:03:43,280 --> 03:03:48,200 IS THAT MOST OF THE APPLICATIONS 4071 03:03:48,200 --> 03:03:49,200 YOU GET FOR SMALL BUSINESS 4072 03:03:49,200 --> 03:03:50,400 GRANTS ARE COMING FROM THEIR 4073 03:03:50,400 --> 03:03:51,560 COMPANIES THAT ARE BEING FORMED 4074 03:03:51,560 --> 03:03:54,600 BY ACADEMICS LABS IS THAT 4075 03:03:54,600 --> 03:03:54,960 CORRECT? 4076 03:03:54,960 --> 03:03:56,680 WHAT IS THE DIFFERENCE? 4077 03:03:56,680 --> 03:03:57,000 >> 4078 03:03:57,000 --> 03:03:58,920 >> YEAH, THEY TAKE A LOT OF 4079 03:03:58,920 --> 03:04:01,160 DIFFERENT FORMS BECAUSE THE 4080 03:04:01,160 --> 03:04:01,880 ELIGIBILITY IS BROAD. 4081 03:04:01,880 --> 03:04:04,520 I WOULD SAY IT'S COMMON THAT WE 4082 03:04:04,520 --> 03:04:06,840 ARE FUNDING VERY EARLY STAGES 4083 03:04:06,840 --> 03:04:15,240 ACADEMIC SPIN OUTS AND WE HAVE 4084 03:04:15,240 --> 03:04:16,080 FILL AND AND COMPANIES THAT WE 4085 03:04:16,080 --> 03:04:18,560 ARE FUNDING AS WELL THAT WERE 4086 03:04:18,560 --> 03:04:21,560 FORMED BY PARENTS OF CHILDREN 4087 03:04:21,560 --> 03:04:23,880 WITH THOSE DISORDERS AND 4088 03:04:23,880 --> 03:04:29,440 OTHERWISE HAVE BEEN PERSONALLY 4089 03:04:29,440 --> 03:04:30,640 EXPERIENCED DISORDERS THAT 4090 03:04:30,640 --> 03:04:31,840 MOTIVATES THEM AND I WOULD SAY 4091 03:04:31,840 --> 03:04:34,120 IT'S SOMETHING THAT YOU NIDS IS 4092 03:04:34,120 --> 03:04:37,600 LOOKING FOR COMPANIES THAT ARE 4093 03:04:37,600 --> 03:04:40,120 DEDICATED TO AREAS SO THAT IS 4094 03:04:40,120 --> 03:04:44,000 IMPORTANT FACTOR IN SORT OF THE 4095 03:04:44,000 --> 03:04:45,280 COMPOSITION AND I THINK IT'S 4096 03:04:45,280 --> 03:04:49,080 VERY FREQUENT THAT WE SEE 4097 03:04:49,080 --> 03:04:53,360 ACADEMICS PARTNER WITH NON 4098 03:04:53,360 --> 03:04:55,120 PROFITS OR FAMILIES IN SOME WAY 4099 03:04:55,120 --> 03:04:58,880 AS WELL AS BUSINESS EXPERTS SO 4100 03:04:58,880 --> 03:05:00,040 IT'S NOT LIKE YOU HAVE TO HAVE 4101 03:05:00,040 --> 03:05:03,480 ALL THE EXPERTISE WITH YOU AS 4102 03:05:03,480 --> 03:05:05,480 ONE INDIVIDUAL AND IT'S ABOUT 4103 03:05:05,480 --> 03:05:06,560 RECOGNIZING WHAT STRENGTHS YOU 4104 03:05:06,560 --> 03:05:07,800 HAVE AND WHAT YOU ARE BRINGING 4105 03:05:07,800 --> 03:05:09,440 TO THE TABLE AND THEN LOOK FOR 4106 03:05:09,440 --> 03:05:19,840 THOSE GAPS AND TRY TO FIND AND 4107 03:05:19,840 --> 03:05:21,240 WHAT SHE THINKS OF BUILDING A 4108 03:05:21,240 --> 03:05:24,920 TEAM THAT'S BEEN SUCCESSFUL. 4109 03:05:24,920 --> 03:05:34,960 >> I WAS READING THE CHAT ON THE 4110 03:05:34,960 --> 03:05:35,400 SIDELINES. 4111 03:05:35,400 --> 03:05:37,680 WHAT DID YOU WANT ME TO ANSWER? 4112 03:05:37,680 --> 03:05:39,800 >> I WAS SPEAKING TO THE KINDS 4113 03:05:39,800 --> 03:05:41,440 OF TEAMS THAT WE SEE AND HOW 4114 03:05:41,440 --> 03:05:42,720 OFTEN THESE ARE VERY EARLY 4115 03:05:42,720 --> 03:05:46,200 COMPANIES AND A LOT OF TIMES 4116 03:05:46,200 --> 03:05:48,200 ANNAN ACADEMIC IS SPITTING OUT 4117 03:05:48,200 --> 03:05:49,480 THE COMPANY AND NOT ALWAYS. 4118 03:05:49,480 --> 03:05:50,760 YOU DO NEED TO BE EVERYTHING IN 4119 03:05:50,760 --> 03:05:52,080 ONE AS THE INDIVIDUAL STARTING 4120 03:05:52,080 --> 03:05:53,880 THE COMPANY AND IT'S ABOUT KIND 4121 03:05:53,880 --> 03:05:55,520 OF RECOGNIZING YOUR SKILLS SET 4122 03:05:55,520 --> 03:05:57,040 AND THE OTHER SKILLS SETS IN THE 4123 03:05:57,040 --> 03:05:57,960 SCIENCE AREA AND BUSINESS AREA 4124 03:05:57,960 --> 03:05:59,360 THAT YOU NO HE HAD TO BRING IT 4125 03:05:59,360 --> 03:06:01,160 TOGETHER AND I THINK IT'S ABOUT 4126 03:06:01,160 --> 03:06:06,040 BUILDING THE RIGHT TEAM IN THAT 4127 03:06:06,040 --> 03:06:07,480 IS SUCCESSFUL. 4128 03:06:07,480 --> 03:06:10,000 >> SO THAT WAS ONE OF MY 4129 03:06:10,000 --> 03:06:10,880 BEGINNING SLIDES. 4130 03:06:10,880 --> 03:06:12,240 IT'S A MASSIVE AMOUNT OF WORK 4131 03:06:12,240 --> 03:06:15,000 AND YOU JUST HAVE TO IMMERSE 4132 03:06:15,000 --> 03:06:16,680 YOURSELF IN IT AND I TRAVEL 4133 03:06:16,680 --> 03:06:18,480 QUITE EXTENSIVELY AND I BROUGHT 4134 03:06:18,480 --> 03:06:24,440 MY SON WITH ME AND I MET WITH 4135 03:06:24,440 --> 03:06:25,600 EVERYBODY AND TOOK A LOT OF 4136 03:06:25,600 --> 03:06:28,760 NOTES AND KEPT THE PHONE NUMBERS 4137 03:06:28,760 --> 03:06:30,160 AND CALLED THEM BACK AND THAT'S 4138 03:06:30,160 --> 03:06:31,560 ONE GOOD THING ABOUT BEING A 4139 03:06:31,560 --> 03:06:34,840 PARENT IS THAT PEOPLE LIKE WE 4140 03:06:34,840 --> 03:06:37,520 TALKED ABOUT ULTRA-GENICS, I'LL 4141 03:06:37,520 --> 03:06:42,120 THROW SOMEONE ELSE OUT THERE 4142 03:06:42,120 --> 03:06:42,760 JUDE SMALL SKI, STEVE GRAY, 4143 03:06:42,760 --> 03:06:45,240 THESE ARE GREAT ADVOCATES OUT 4144 03:06:45,240 --> 03:06:48,800 THERE THAT CAN STEER YOU IN THE 4145 03:06:48,800 --> 03:06:49,680 RIGHT DIRECTION AND THAT'S WHAT 4146 03:06:49,680 --> 03:06:50,480 YOU NEED. 4147 03:06:50,480 --> 03:06:52,800 MY LOCAL HOSPITALS, I'M IN 4148 03:06:52,800 --> 03:06:54,680 BROOKLYN, NEW YORK SO I WAS 4149 03:06:54,680 --> 03:06:58,440 LUCKY TO BE AROUND NYU AND 4150 03:06:58,440 --> 03:07:00,000 EINSTEIN, COLOMBIA, AND GOING 4151 03:07:00,000 --> 03:07:02,960 AND TALKING TO THE NEUROLOGISTS 4152 03:07:02,960 --> 03:07:05,880 AND THE GENETICIST THAT HAVE NIH 4153 03:07:05,880 --> 03:07:08,960 GRANTS AS WELL WHO WORK WITH 4154 03:07:08,960 --> 03:07:10,600 ACADEMIA AND OTHER SPONSORS AND 4155 03:07:10,600 --> 03:07:13,800 THESE GUYS REALLY GAVE MY 4156 03:07:13,800 --> 03:07:16,200 MARCHING ORDERS AND THEY CAN 4157 03:07:16,200 --> 03:07:18,680 PROMOTE YOU AND HOOK YOU UP WITH 4158 03:07:18,680 --> 03:07:21,160 OTHER PEOPLE AND THAT CAN BRING 4159 03:07:21,160 --> 03:07:22,760 YOU FURTHER AND YEAH, YOU JUST 4160 03:07:22,760 --> 03:07:25,040 HAVE TO IMMERSE YOURSELF IN IT 4161 03:07:25,040 --> 03:07:27,680 AND IT'S HARD AND IT'S A 24/7 4162 03:07:27,680 --> 03:07:28,960 JOB AND IT'S YOU KNOW, 4163 03:07:28,960 --> 03:07:30,040 ESPECIALLY WHEN YOU ARE TAKING 4164 03:07:30,040 --> 03:07:32,840 CARE OF YOUR CHILD. 4165 03:07:32,840 --> 03:07:37,360 IT'S NOT RECOMMENDED. 4166 03:07:37,360 --> 03:07:38,920 ALSO THE OTHER PATIENT ADVOCATES 4167 03:07:38,920 --> 03:07:43,760 AND FAMILIES ARE SUPPORTIVE. 4168 03:07:43,760 --> 03:07:45,080 >> WE HAVE A GOOD QUESTION AND 4169 03:07:45,080 --> 03:07:47,000 THIS IS IMPORTANT FOR PEOPLE TO 4170 03:07:47,000 --> 03:07:50,040 THINK ABOUT BEFORE THEY CREATE A 4171 03:07:50,040 --> 03:07:50,240 COMPANY. 4172 03:07:50,240 --> 03:07:52,480 AND ANY GUIDANCE ON BALANCING 4173 03:07:52,480 --> 03:07:54,040 BETWEEN WANTING THE UPSIDE TO 4174 03:07:54,040 --> 03:07:56,280 JUST ROYALTIES ON COMMERCIAL 4175 03:07:56,280 --> 03:07:59,680 SUCCESS AND LIMITING FRICTION? 4176 03:07:59,680 --> 03:08:00,960 HOW MUCH LEVERAGE DOES IT ARE 4177 03:08:00,960 --> 03:08:03,680 AND IT'S A SMART QUESTION 4178 03:08:03,680 --> 03:08:05,080 BECAUSE IF YOU ARE HAVING A 4179 03:08:05,080 --> 03:08:06,880 COMPANY AND IT MAY BE COMPETING 4180 03:08:06,880 --> 03:08:07,920 AGAINST OTHER COMPANIES IN THE 4181 03:08:07,920 --> 03:08:09,480 SPACE, HOW DOES IT AFFECT YOUR 4182 03:08:09,480 --> 03:08:11,360 ROLE AS A PATIENT ADVOCATE AND 4183 03:08:11,360 --> 03:08:13,280 YOUR ABILITY TO SORT OF BE AN 4184 03:08:13,280 --> 03:08:15,160 HONEST BROKER WITH ALL OF THE 4185 03:08:15,160 --> 03:08:18,200 STAKEHOLDERS IN YOUR DISEASE 4186 03:08:18,200 --> 03:08:18,560 SPACE? 4187 03:08:18,560 --> 03:08:19,400 >> FOR ANYBODY. 4188 03:08:19,400 --> 03:08:26,320 >> SO, LET ME JUST SAY THAT WE 4189 03:08:26,320 --> 03:08:30,840 STRUGGLED WITH BALANCING WHAT A 4190 03:08:30,840 --> 03:08:31,880 ROYALTY RATES SHOULD BE FOR 4191 03:08:31,880 --> 03:08:33,200 CHARITY AND I MEAN, OBVIOUSLY 4192 03:08:33,200 --> 03:08:37,880 THE CHARITY'S GOAL IS TO CREATE 4193 03:08:37,880 --> 03:08:41,040 A THERAPY FOR THEIR DISEASE AND 4194 03:08:41,040 --> 03:08:43,880 ON THE OTHER HAND, THEY HAVE 4195 03:08:43,880 --> 03:08:45,600 RAISING MONEY IS HARD AND JILL 4196 03:08:45,600 --> 03:08:50,320 TALKED ABOUT IT EASIER AND IT'S 4197 03:08:50,320 --> 03:08:51,280 SO YOU HAVE TOUGH TO RAISE MONEY 4198 03:08:51,280 --> 03:08:54,000 AND GETTING RETURN IF THERE'S 4199 03:08:54,000 --> 03:08:57,240 SUCCESS IS HELPFUL AND SHARING 4200 03:08:57,240 --> 03:08:59,920 WITH COMPANIES SO, GENERALLY, I 4201 03:08:59,920 --> 03:09:07,400 SORT OF USE A RULE OF THUMB AND 4202 03:09:07,400 --> 03:09:09,280 MY RULE IS THUMB IS ANY FUNDING 4203 03:09:09,280 --> 03:09:15,320 BELOW LET'S SAY, $8 MILLION I 4204 03:09:15,320 --> 03:09:20,440 USE A MULTIPLE OF THE AWARD AND 4205 03:09:20,440 --> 03:09:24,800 MULTIPLES RANGE FROM THR THREE O 4206 03:09:24,800 --> 03:09:27,560 SIX TIMES AND THEY'RE PAID AT 4207 03:09:27,560 --> 03:09:29,600 SUCCESS AT APPROVAL BUT THERE'S 4208 03:09:29,600 --> 03:09:32,800 AN EARLY PAYMENT IF THERE'S AN 4209 03:09:32,800 --> 03:09:34,840 EXIT TO IT TO A LARGER COMPANY 4210 03:09:34,840 --> 03:09:38,600 AND SO WHY IS IT THREE AND NOT 4211 03:09:38,600 --> 03:09:39,280 SIX? 4212 03:09:39,280 --> 03:09:40,960 DEPENDS IF IT'S EARLY STAGE AND 4213 03:09:40,960 --> 03:09:43,760 IN THE RISK IS HIGHER THE 4214 03:09:43,760 --> 03:09:47,120 MULTIPLE IS OBVIOUSLY HIGHER SO 4215 03:09:47,120 --> 03:09:52,360 IT'S IN THE FIVE-PERSON, FIVE-X 4216 03:09:52,360 --> 03:09:54,760 RANGE AND ABOVE THE 8 MILLION 4217 03:09:54,760 --> 03:10:05,120 MARK WE COME UP WITH A 4218 03:10:05,360 --> 03:10:06,320 PERCENTAGE OF NET SALES. 4219 03:10:06,320 --> 03:10:07,720 EVEN IF YOU HAVE A PRODUCT 4220 03:10:07,720 --> 03:10:09,880 APPROVED WE PUT SOME GOVERNOR ON 4221 03:10:09,880 --> 03:10:13,400 IT AND SOME LIMITATIONS SO WE 4222 03:10:13,400 --> 03:10:16,000 SAY IN NO CASE SHALL THE 4223 03:10:16,000 --> 03:10:18,400 ROYALTY, SHALL THE FIVE X OR SIX 4224 03:10:18,400 --> 03:10:20,400 X IS PAID WITHIN THROW YEARS AND 4225 03:10:20,400 --> 03:10:23,960 AFTER A FDA APPROVAL AND USUALLY 4226 03:10:23,960 --> 03:10:27,960 WE PUT IN THE NO CASE SHELL THE 4227 03:10:27,960 --> 03:10:38,120 PAYMENT EXCEED X. 4228 03:10:38,120 --> 03:10:41,280 >> TWO MINUTE WARNING. 4229 03:10:41,280 --> 03:10:42,920 >> I WANT TO HEAR YOUR 4230 03:10:42,920 --> 03:10:44,000 PERSPECTIVE ON THIS BECAUSE YOU 4231 03:10:44,000 --> 03:10:45,680 WERE THE PATIENT ADVOCATE THAT 4232 03:10:45,680 --> 03:10:50,000 AND THE HONEST BROKER AND YOU 4233 03:10:50,000 --> 03:10:50,240 HAVE TO. 4234 03:10:50,240 --> 03:10:50,800 >> 4235 03:10:50,800 --> 03:10:52,840 >> YOU TRIGGERED MY MIND ON SO 4236 03:10:52,840 --> 03:10:53,760 MANY DIFFERENT THINGS AND 4237 03:10:53,760 --> 03:10:58,200 WORKING WITH ACADEMIA CAN BE 4238 03:10:58,200 --> 03:10:59,880 BROUGHTALLY CARD AND THEIR TECH 4239 03:10:59,880 --> 03:11:10,440 TRANSFER DEPARTMENTS ARE SO HAD 4240 03:11:16,360 --> 03:11:18,040 HE BOUGHT BACK AND I GOT ON A 4241 03:11:18,040 --> 03:11:19,240 FLIGHT AND BANGED ON THE DOORS 4242 03:11:19,240 --> 03:11:21,480 AND SAY NO WAY AND THIS IS 4243 03:11:21,480 --> 03:11:28,320 ULTRARARE DISEASE AND THERE'S NO 4244 03:11:28,320 --> 03:11:31,240 WAY AND I NEED TO AND YOU HAVE 4245 03:11:31,240 --> 03:11:34,360 TO YOU PROBABLY ARE ARE THEIR 4246 03:11:34,360 --> 03:11:36,360 ONLY SOURCE AND YOU HAVE OTHER 4247 03:11:36,360 --> 03:11:38,200 OPTIONS AND THIS A MATTER OF 4248 03:11:38,200 --> 03:11:40,440 GOING OUT FINDING THE RESEARCH 4249 03:11:40,440 --> 03:11:45,320 AND IT'S GETTING MARRIED AND YOU 4250 03:11:45,320 --> 03:11:49,240 REALLY BEFORE YOU MARRY YOUR 4251 03:11:49,240 --> 03:11:50,880 PARTNER AND THEY HOLD THE 4252 03:11:50,880 --> 03:11:54,440 STRINGS THAT MAKE LIFE DIFFICULT 4253 03:11:54,440 --> 03:11:56,680 FOR YOU AND BROKERING BEING THE 4254 03:11:56,680 --> 03:12:00,640 PATIENT ADD CO VISIT AND IT'S 4255 03:12:00,640 --> 03:12:04,800 THE THE SPONSOR AS WELL AND IT'S 4256 03:12:04,800 --> 03:12:07,160 REALLY NOW CHANGED FOR ME AND I 4257 03:12:07,160 --> 03:12:09,800 DON'T DO AK DAMIA RESEARCH SO 4258 03:12:09,800 --> 03:12:11,600 MUCH AND WE BRING THEM ON AS 4259 03:12:11,600 --> 03:12:15,400 CONSULTANTS SO THEY'RE NOT TIED 4260 03:12:15,400 --> 03:12:25,880 INTO THE IF YOU BANK ROLL YOUR 4261 03:12:37,080 --> 03:12:39,800 MOUSE MODEL AND DO AND THERE ARE 4262 03:12:39,800 --> 03:12:43,080 LOTS OF COMPANIES OUT THERE AND 4263 03:12:43,080 --> 03:12:44,280 BUT YOU HAVE TO HAVE CONSULT 4264 03:12:44,280 --> 03:12:46,400 APARTMENT WHO IS GOING TO DESIGN 4265 03:12:46,400 --> 03:12:50,280 THE ENTIRE STUDY FOR YOU AND BE 4266 03:12:50,280 --> 03:12:51,840 WITH YOU ALL THE ENTIRE STEP OF 4267 03:12:51,840 --> 03:12:53,480 THE WAY AND I'M SORRY I'M GOING 4268 03:12:53,480 --> 03:12:56,240 TO HAVE ALL MY PROFESSOR AND MY 4269 03:12:56,240 --> 03:12:58,000 ACADEMICS HELP ME WITH 4270 03:12:58,000 --> 03:12:59,480 PITCHFORKS BUT I THINK IF YOU 4271 03:12:59,480 --> 03:13:01,040 CAN DON'T THAT AND I WOULD 4272 03:13:01,040 --> 03:13:02,200 DEFINITELY DO IT BECAUSE YOU GET 4273 03:13:02,200 --> 03:13:04,680 WHAT YOU PAY FOR AND IT'S 4274 03:13:04,680 --> 03:13:06,200 SOMEONE GOES ON MATERNITY LEAVE 4275 03:13:06,200 --> 03:13:09,360 AND THERE'S SOMEONE TO ACCEPT IN 4276 03:13:09,360 --> 03:13:12,520 THE PLACE AND GET MARRIED ALL 4277 03:13:12,520 --> 03:13:14,000 THE TIME AND IT'S TOUGH, GUYS. 4278 03:13:14,000 --> 03:13:16,480 >> GOOD FOR YOU, JILL. 4279 03:13:16,480 --> 03:13:17,920 >> WE HAVE RUN OUT OF TIME AND 4280 03:13:17,920 --> 03:13:19,600 EMILY I WANT TO SUGGEST THAT YOU 4281 03:13:19,600 --> 03:13:21,120 AT SOME POINT ORGANIZE A WHOLE 4282 03:13:21,120 --> 03:13:26,000 DAY WORKSHOP ON SMALL BUSINESS 4283 03:13:26,000 --> 03:13:28,640 THERE'S SO MUCH WE NEED TO KNOW. 4284 03:13:28,640 --> 03:13:31,600 THANK YOU SO MUCH TO EMILY, KEN, 4285 03:13:31,600 --> 03:13:33,480 WE'RE SO GRATEFUL AND JILL FOR 4286 03:13:33,480 --> 03:13:34,480 TELLING YOUR STORY AND THANK YOU 4287 03:13:34,480 --> 03:13:36,560 FOR JOINING THE PANEL AND SAM, 4288 03:13:36,560 --> 03:13:38,680 THINK WE'RE GOING TO A BREAK 4289 03:13:38,680 --> 03:13:38,960 NOW, RIGHT. 4290 03:13:38,960 --> 03:13:40,480 I'M GOING TO HAND IT BACK OFF TO 4291 03:13:40,480 --> 03:13:40,640 YOU. 4292 03:13:40,640 --> 03:13:41,840 >> YES, WE ARE. 4293 03:13:41,840 --> 03:13:44,000 THANK YOU ALL FOR THAT SESSION 4294 03:13:44,000 --> 03:13:45,880 AND THANK YOU FOR MODERATING SO 4295 03:13:45,880 --> 03:13:48,120 SHE JUST MENTIONED WE'RE HEADED 4296 03:13:48,120 --> 03:13:52,000 INTO A HOUR LONG BREAK UNTIL 4297 03:13:52,000 --> 03:13:54,280 2:15. 4298 03:13:54,280 --> 03:13:56,600 WELCOME BACK, EVERYONE, 4299 03:13:56,600 --> 03:14:00,400 THE AFTERNOON SESSIONS OF OUR 4300 03:14:00,400 --> 03:14:01,920 2022NINDS NON-PROFIT QUORUM. 4301 03:14:01,920 --> 03:14:03,640 THE SESSIONS THIS AFTERNOON ARE 4302 03:14:03,640 --> 03:14:09,440 GOING TO KICKOFF WITH THE ONE ON 4303 03:14:09,440 --> 03:14:10,840 YOUR SCREEN. 4304 03:14:10,840 --> 03:14:13,320 HOW TO WORK WITH ACADEMIC 4305 03:14:13,320 --> 03:14:13,600 RESEARCHERS. 4306 03:14:13,600 --> 03:14:15,120 THIS SESSION WILL BE MODERATED 4307 03:14:15,120 --> 03:14:23,600 BY Dr. PENNY DACKS FROM THE 4308 03:14:23,600 --> 03:14:27,120 ASSOCIATION OF FRONTTOMEPORAL 4309 03:14:27,120 --> 03:14:28,440 DEGENERATION WHERE SHE FUNDS 4310 03:14:28,440 --> 03:14:31,800 RESEARCH, RECRUIT AND RETAIN TAL 4311 03:14:31,800 --> 03:14:32,840 ANT, ENGAGE IN THE COMMUNITY 4312 03:14:32,840 --> 03:14:36,560 WITH LIVED EXPERIENCE. 4313 03:14:36,560 --> 03:14:40,080 SHE IS PRESIDENT OF THE FTD 4314 03:14:40,080 --> 03:14:43,240 DISORDERS REGISTRY LLC WHICH IS 4315 03:14:43,240 --> 03:14:44,360 RESPONSIBLE FOR PARTNERSHIPS 4316 03:14:44,360 --> 03:14:45,920 SUSTAINABILITY OF THIS 4317 03:14:45,920 --> 03:14:48,120 ORGANIZATION AFFILIATE. 4318 03:14:48,120 --> 03:14:49,320 PREVIOUSLY, SHE WORKED AT THE 4319 03:14:49,320 --> 03:14:50,960 AMERICAN EPILEPSIES SOCIETY 4320 03:14:50,960 --> 03:14:52,040 OVERSEEING MISSION RELATED 4321 03:14:52,040 --> 03:14:53,840 PROGRAMS IN RESEARCH, MEDICAL 4322 03:14:53,840 --> 03:14:55,520 EDUCATION AND CLINICAL 4323 03:14:55,520 --> 03:14:58,360 ACTIVITIES AND AS WELL AS AS THE 4324 03:14:58,360 --> 03:14:59,200 ALZHEIMER'S DRUG DISCOVERY 4325 03:14:59,200 --> 03:15:03,840 PROGRAM WHERE SHE LED COGNITIVE 4326 03:15:03,840 --> 03:15:04,680 VITALITY.ORG AND THE AGING 4327 03:15:04,680 --> 03:15:06,200 PROGRAM TO SOURCE AND EVALUATE 4328 03:15:06,200 --> 03:15:08,240 POTENTIAL THERAPIES. 4329 03:15:08,240 --> 03:15:11,280 PENNY TRAINED IN NEUROSCIENCE 4330 03:15:11,280 --> 03:15:13,480 WITH A PH.D AND THE ICON SCHOOL 4331 03:15:13,480 --> 03:15:18,120 OF MEDICINE IN MOU MOUNT SINAI. 4332 03:15:18,120 --> 03:15:22,440 I HOPE PENNY IS ON. 4333 03:15:22,440 --> 03:15:24,960 >> YES, I'M HERE. 4334 03:15:24,960 --> 03:15:26,440 >> I CAN GO TO YOU AND LET YOU 4335 03:15:26,440 --> 03:15:27,760 TAKE IT AWAY. 4336 03:15:27,760 --> 03:15:29,200 >> THANK YOU, SAMANTHA. 4337 03:15:29,200 --> 03:15:33,720 I'M HONORED TO BE HERE WITH 4338 03:15:33,720 --> 03:15:34,520 EVERYBODY TODAY. 4339 03:15:34,520 --> 03:15:35,760 SO THINKING ABOUT THE TITLE OF 4340 03:15:35,760 --> 03:15:37,120 THIS SESSION LEVERAGING PROGRESS 4341 03:15:37,120 --> 03:15:38,400 As COT SCIENTIFIC PIPELINE, 4342 03:15:38,400 --> 03:15:41,440 HOW TO WORK WITH ACADEMIC 4343 03:15:41,440 --> 03:15:42,880 RESEARCHERS, THAT WE'RE GOING TO 4344 03:15:42,880 --> 03:15:44,480 SHOWCASE ARE FEW IS THERE'S NO 4345 03:15:44,480 --> 03:15:48,120 ONE ANSWER TO THAT QUESTION. 4346 03:15:48,120 --> 03:15:50,560 IT VARIES WHAT IS HAPPENING 4347 03:15:50,560 --> 03:15:51,880 WITHIN YOUR SPACE. 4348 03:15:51,880 --> 03:15:54,960 THERE IS SOME NON-PROFIT AND 4349 03:15:54,960 --> 03:15:57,120 ACADEMIC RESEARCHERS ON WHAT ARE 4350 03:15:57,120 --> 03:15:58,880 THE RIGHT STEPS WITH DIFFERENT 4351 03:15:58,880 --> 03:16:02,440 ADVISORY BOARDS AND WE FUND 4352 03:16:02,440 --> 03:16:02,760 RESEARCH. 4353 03:16:02,760 --> 03:16:04,600 HOW DO WE MAKE SURE OUR FUNDING 4354 03:16:04,600 --> 03:16:07,400 IS MEETING UNMET NEEDS. 4355 03:16:07,400 --> 03:16:08,920 ARE WE ATTRACTING PEOPLE TO THE 4356 03:16:08,920 --> 03:16:10,360 SPACE AND ARE WE TRYING TO 4357 03:16:10,360 --> 03:16:13,640 BRIDGE FUNDING BECAUSE FUNDING 4358 03:16:13,640 --> 03:16:16,960 AVAILABILITY IS BECOME 4359 03:16:16,960 --> 03:16:18,640 RELATIVELY WEAK AND ARE WE 4360 03:16:18,640 --> 03:16:21,920 SEEING RESEARCH TO GET IT IN OUR 4361 03:16:21,920 --> 03:16:24,680 SPACE AND HOW WE WORK CONVENING 4362 03:16:24,680 --> 03:16:27,240 THOUGHT LEADERS TO HELP CATALYZE 4363 03:16:27,240 --> 03:16:29,000 INNOVATION AND ARE WE CREATING 4364 03:16:29,000 --> 03:16:32,040 RESOURCES AND PARTNERING SO THAT 4365 03:16:32,040 --> 03:16:34,160 WE CAN FOR EXAMPLE HELP ACADEMIC 4366 03:16:34,160 --> 03:16:35,720 RESEARCHERS ACCESS OR UNDERSTAND 4367 03:16:35,720 --> 03:16:37,480 THE PATIENT COMMUNITY THAT WE 4368 03:16:37,480 --> 03:16:40,040 LIVED WITH AND SO THE RIGHT 4369 03:16:40,040 --> 03:16:42,040 ANSWERS TO ALL OF THESE THINGS 4370 03:16:42,040 --> 03:16:45,320 DEPENDS ON WHAT IS HAPPENING IN 4371 03:16:45,320 --> 03:16:46,880 YOUR FIELD AND WHAT IS THE STAGE 4372 03:16:46,880 --> 03:16:49,680 OF RESEARCH AND WHAT IS ON THAT 4373 03:16:49,680 --> 03:16:51,240 SCIENTIFIC PIPELINE IN THAT 4374 03:16:51,240 --> 03:16:53,120 LONG-TERM JOURNEY WHERE IS IT? 4375 03:16:53,120 --> 03:16:54,320 WHERE IS EVERYONE? 4376 03:16:54,320 --> 03:16:57,000 AND WHAT IS THE STAGE OF THAT 4377 03:16:57,000 --> 03:16:57,440 RESEARCH. 4378 03:16:57,440 --> 03:16:59,920 SO WE'RE GOING TO HEAR FROM FOUR 4379 03:16:59,920 --> 03:17:01,520 DIFFERENT SCIENTIFIC LEADERS 4380 03:17:01,520 --> 03:17:03,560 TODAY ABOUT THE SUCCESS STORIES 4381 03:17:03,560 --> 03:17:06,960 THAT THEY'VE SEEN IN THEIR WORK 4382 03:17:06,960 --> 03:17:07,840 WITH HOW FAR NON PROFITS CAN 4383 03:17:07,840 --> 03:17:09,400 REALLY MAKE A DIFFERENCE AND HOW 4384 03:17:09,400 --> 03:17:11,400 THEY CAN HAVE REALLY ROBUST 4385 03:17:11,400 --> 03:17:13,800 RELATIONSHIPS WITH ACADEMIC 4386 03:17:13,800 --> 03:17:14,120 RESEARCHERS. 4387 03:17:14,120 --> 03:17:17,640 WE'RE GOING TO HEAR FROM FROM 4388 03:17:17,640 --> 03:17:21,960 KENNETH FISCHBECK AND SABRINA 4389 03:17:21,960 --> 03:17:27,640 PAGANONI AND FROM DAVID LIMBRIKK 4390 03:17:27,640 --> 03:17:28,560 FROM THE WASHINGTON SCHOOL 4391 03:17:28,560 --> 03:17:35,800 UNIVERSITY OF MEDICINE AND 4392 03:17:35,800 --> 03:17:39,960 MIGUEL SENA-ESTEVES. 4393 03:17:39,960 --> 03:17:41,080 FIRST ON THE LIST IS KEN. 4394 03:17:41,080 --> 03:17:43,920 >> CAN YOU HEAR ME OK? 4395 03:17:43,920 --> 03:17:47,200 >> SO, I AM A INVESTIGATOR IN 4396 03:17:47,200 --> 03:17:49,560 THE INTRAMURAL PROGRAM, THE 4397 03:17:49,560 --> 03:17:51,760 DIVISION OF INTRAMURAL RESEARCH 4398 03:17:51,760 --> 03:17:56,040 AT NINDS AND THIS IS KIND OF A 4399 03:17:56,040 --> 03:17:58,080 UNIQUE SITUATION WE HAVE HERE IN 4400 03:17:58,080 --> 03:17:59,480 BETHESDA ON THE NIH CAMPUS. 4401 03:17:59,480 --> 03:18:03,920 WE ARE FUNDED TO DO RESEARCH WE 4402 03:18:03,920 --> 03:18:05,400 DON'T HAVE TO A REPLY FOR GRANTS 4403 03:18:05,400 --> 03:18:06,560 AS OTHER INVESTIGATORS DO IN THE 4404 03:18:06,560 --> 03:18:08,040 REST OF THE COUNTRY. 4405 03:18:08,040 --> 03:18:10,160 WE ARE FUNDED AND WE GET PAID TO 4406 03:18:10,160 --> 03:18:11,560 DO OUR RESEARCH AND WE ARE 4407 03:18:11,560 --> 03:18:13,600 REVIEWED EVERY THREE TO FOUR 4408 03:18:13,600 --> 03:18:16,000 YEARS BY OUTSIDE REVIEWERS AS 4409 03:18:16,000 --> 03:18:17,400 LONG AS WE'RE DOING WELL, WE 4410 03:18:17,400 --> 03:18:19,120 CONTINUE TO GET RESEARCH 4411 03:18:19,120 --> 03:18:19,360 FUNDING. 4412 03:18:19,360 --> 03:18:20,760 WE'RE TRYING TO PUT THAT MONEY 4413 03:18:20,760 --> 03:18:22,200 TO GOOD USE AND THE BEST 4414 03:18:22,200 --> 03:18:23,840 POSSIBLE USE IN REDUCING THE 4415 03:18:23,840 --> 03:18:34,800 BURDEN OF NEWER LO NEURO LOGIC . 4416 03:18:34,800 --> 03:18:38,520 I USUALLY SHOW THIS AS 4417 03:18:38,520 --> 03:18:39,840 DISCLOSURE AND POTENTIAL 4418 03:18:39,840 --> 03:18:44,240 CONFLICTS OF INTEREST BUT FOR 4419 03:18:44,240 --> 03:18:46,840 THIS FORUM, I'VE LISTED NOT 4420 03:18:46,840 --> 03:18:49,600 CONFLICT OF INTEREST BUT MY TRUE 4421 03:18:49,600 --> 03:18:51,720 INTEREST LOWS AND IT'S NOT JUST 4422 03:18:51,720 --> 03:18:54,080 ENDURING RESEARCH HERE AT THE 4423 03:18:54,080 --> 03:18:56,240 NIH, IN BETHESDA BUT IT'S 4424 03:18:56,240 --> 03:18:59,960 ENGAGING IN INTERACTING WITH THE 4425 03:18:59,960 --> 03:19:02,560 LARGE NUMBER OF NON-PROFIT 4426 03:19:02,560 --> 03:19:05,080 ORGANIZATIONS AND FOR PROFIT 4427 03:19:05,080 --> 03:19:06,480 ORGANIZATIONS AND I'VE LONG OVER 4428 03:19:06,480 --> 03:19:11,120 THE COURSE OF MY CAREER 4429 03:19:11,120 --> 03:19:13,480 INTERACTS WITH IN THE PAST TWO 4430 03:19:13,480 --> 03:19:15,640 OR THREE YEARS I'VE INTERACTED 4431 03:19:15,640 --> 03:19:17,960 WITH THE ORGANIZATIONS LISTED 4432 03:19:17,960 --> 03:19:19,040 HERE AND I'VE BEEN FORTUNATE TO 4433 03:19:19,040 --> 03:19:21,240 BE ABLE TO DETHREE SA BAT 4434 03:19:21,240 --> 03:19:29,640 TICKALS IN INDUSTRY AND I'M 4435 03:19:29,640 --> 03:19:39,800 CONTINUING 4436 03:19:44,240 --> 03:19:46,160 THE NON-PROFIT ARE FORECASTED IN 4437 03:19:46,160 --> 03:19:51,680 OUR INTEREST OF INTEREST, 4438 03:19:51,680 --> 03:19:53,720 NEURODEGENERATIVAL DISEASE AND 4439 03:19:53,720 --> 03:19:58,400 THE FRENCH EQUIVALENT OF THE NDA 4440 03:19:58,400 --> 03:20:01,360 ASK TREAT-NMD FOUNDATION AND 4441 03:20:01,360 --> 03:20:04,080 TARGET ALS, PACKARD CENTER FOR 4442 03:20:04,080 --> 03:20:07,840 ALS AND THE KENNEDY'S DISEASE 4443 03:20:07,840 --> 03:20:10,000 ASSOCIATION AND RECENTLY AND FOR 4444 03:20:10,000 --> 03:20:11,880 SOME YEARS NOW WITH THE SMA 4445 03:20:11,880 --> 03:20:13,280 FOUNDATION AND A COUPLE OF 4446 03:20:13,280 --> 03:20:15,200 DISEASES THAT FOCUSING ON 4447 03:20:15,200 --> 03:20:19,360 HUNTING TON'S DISEASE AND ONE 4448 03:20:19,360 --> 03:20:22,120 NON-PROFIT IS THE N-LOREM 4449 03:20:22,120 --> 03:20:23,160 FOUNDATION SET UP A COUPLE OF 4450 03:20:23,160 --> 03:20:30,200 YEARS AGO AS A PIN SPIN OFF BY E 4451 03:20:30,200 --> 03:20:33,400 IONIS FOUNDATION AND IT'S SET UP 4452 03:20:33,400 --> 03:20:38,560 LIKE ULTRARARE AND SO ON AND 4453 03:20:38,560 --> 03:20:40,080 THIS IS STAN CROOK CAME UP WITH 4454 03:20:40,080 --> 03:20:41,800 NANO RARE IT'S A FOUNDATION THAT 4455 03:20:41,800 --> 03:20:45,080 IS SET UP TO PROVIDE ALL THE 4456 03:20:45,080 --> 03:20:46,840 NUCLEOTIDE THERAPY FOR PATIENTS 4457 03:20:46,840 --> 03:20:49,440 WITH DISEASES WHERE THEY'RE THE 4458 03:20:49,440 --> 03:20:50,880 ONLY PATIENTS WITH THE DISEASE 4459 03:20:50,880 --> 03:20:53,080 IN THE WORLD OR MAYBE UP TO 30 4460 03:20:53,080 --> 03:20:57,920 OR SO ARE AFFECTED BY THIS THE 4461 03:20:57,920 --> 03:21:00,160 DISEASE SO THEY'RE MUCH LESS 4462 03:21:00,160 --> 03:21:01,600 COMMON THAN THE ULTRARARE 4463 03:21:01,600 --> 03:21:03,600 DISEASES AND THE FOUNDATION MAKE 4464 03:21:03,600 --> 03:21:05,000 THE NUCLEO TIDES AVAILABLE AS 4465 03:21:05,000 --> 03:21:08,160 TREATMENT FOR INDIVIDUALIZED HAD 4466 03:21:08,160 --> 03:21:12,680 THESE PATIENTS AND PROVIDE THEM 4467 03:21:12,680 --> 03:21:19,040 FOR FREE SORRY FAR THEY 4468 03:21:19,040 --> 03:21:20,360 WILL DO THAT WITH NEW TREATMENT 4469 03:21:20,360 --> 03:21:21,680 FOR THESE PATIENTS THIS YEAR. 4470 03:21:21,680 --> 03:21:24,520 AND I MENTIONED THE INTERACTIONS 4471 03:21:24,520 --> 03:21:27,320 I'VE HAD WITH THE COMPANIES 4472 03:21:27,320 --> 03:21:28,640 LISTED HERE. 4473 03:21:28,640 --> 03:21:38,920 SO, NEXT SLIDE. 4474 03:21:39,800 --> 03:21:41,320 THE RESEARCH REEF DONE OVER THE 4475 03:21:41,320 --> 03:21:43,120 YEARS IS ON THIS PROGRAM WHICH A 4476 03:21:43,120 --> 03:21:44,800 SLIDE I'VE USED FOR THIS TIME 4477 03:21:44,800 --> 03:21:51,320 NOW AND OVER THE LAST 35 YEARS 4478 03:21:51,320 --> 03:21:55,040 NOW, I LARGE NUMBER OF DISEASE 4479 03:21:55,040 --> 03:21:56,800 GENES HAVE BEEN IDENTIFIED AND 4480 03:21:56,800 --> 03:22:03,520 AT LAST COUNT 7100 DIFFERENT 4481 03:22:03,520 --> 03:22:05,640 DISEASES THAT HAVE AN IDENTIFIED 4482 03:22:05,640 --> 03:22:08,120 GENETIC CAUSE AND THIS IS BEEN 4483 03:22:08,120 --> 03:22:11,760 CONTRIBUTED TO AT THE NIH AND 4484 03:22:11,760 --> 03:22:13,160 SEEING PATIENT CHARACTERIZING 4485 03:22:13,160 --> 03:22:15,200 THE DISEASE MANIFESTATIONS AND 4486 03:22:15,200 --> 03:22:16,480 COLLECTING SAMPLES DURING 4487 03:22:16,480 --> 03:22:18,480 SEQUENCING AND ANALYZING THE 4488 03:22:18,480 --> 03:22:19,240 VARIANTS AND MAPPING AND 4489 03:22:19,240 --> 03:22:25,720 IDENTIFYING THE DISEASE CHAINS 4490 03:22:25,720 --> 03:22:29,840 AND CAUSES OF BEGAN ET TICK 4491 03:22:29,840 --> 03:22:32,520 DISEASES BUT IT STARTS US ON THE 4492 03:22:32,520 --> 03:22:34,520 BOTTOM PART OF THIS CLUB TO 4493 03:22:34,520 --> 03:22:35,120 CHARACTERIZE THE GENES AND 4494 03:22:35,120 --> 03:22:36,600 FIGURE OUT THE NORMAL FUNCTION 4495 03:22:36,600 --> 03:22:39,840 OF THE GENE AND HOW THOSE NORMAN 4496 03:22:39,840 --> 03:22:43,200 FUNCTION IS ALTERED IF A LOSS OF 4497 03:22:43,200 --> 03:22:45,120 FUNCTION AND TO DEVELOP SUB 4498 03:22:45,120 --> 03:22:47,560 CULTURE IN ANIMAL MODELS WE USE 4499 03:22:47,560 --> 03:22:50,200 A LOT OF CELLS AND MOUSE MODELS 4500 03:22:50,200 --> 03:22:52,680 AND TO USE TO TEST TO SCREEN FOR 4501 03:22:52,680 --> 03:22:54,920 NEW TREATMENTS AND THEN TO 4502 03:22:54,920 --> 03:22:57,400 ASSESS NEW TREATMENTS FOR 4503 03:22:57,400 --> 03:22:59,720 EFFICACY AND SAFETY AND THEN 4504 03:22:59,720 --> 03:23:00,920 FINAL LIGHT LAST STEP TO CLOSE 4505 03:23:00,920 --> 03:23:03,160 HERE, WHERE THERE HAS BEEN SOME 4506 03:23:03,160 --> 03:23:04,840 SUCCESS IT'S BEEN A LOT OF WORK 4507 03:23:04,840 --> 03:23:06,840 AND WE CAN POINT TO A DISEASE 4508 03:23:06,840 --> 03:23:08,800 THAT'S WE HAVE WORKED ON THAT 4509 03:23:08,800 --> 03:23:10,560 HAVE SUCCESSFULLY CLOSED THE GAP 4510 03:23:10,560 --> 03:23:14,200 THROUGH CLINICAL TRIALS AND UP 4511 03:23:14,200 --> 03:23:16,200 TO HAVE SAFE AND EFFECTIVE 4512 03:23:16,200 --> 03:23:17,720 TREATMENT FOR THE DISEASE AND 4513 03:23:17,720 --> 03:23:21,320 THE POSTER CHILD FOR OUR FIELD 4514 03:23:21,320 --> 03:23:22,760 IS DISEASE WE'VE BEEN INVOLVED 4515 03:23:22,760 --> 03:23:25,680 WITH FOR A NUMBER OF YEARS AND 4516 03:23:25,680 --> 03:23:27,320 DEFINING THE DISEASE AND HELPING 4517 03:23:27,320 --> 03:23:30,000 THE IDENTIFICATION AND CHANGE 4518 03:23:30,000 --> 03:23:33,640 AND WORKING WITH OTHERS TO SHOW 4519 03:23:33,640 --> 03:23:36,040 BENEFIT IN THE FIRST BENEFITS IN 4520 03:23:36,040 --> 03:23:40,360 MOUSE MODELS AND INTERVENTION TO 4521 03:23:40,360 --> 03:23:44,320 CORRECT THE UNDERLINE DEFECT OF 4522 03:23:44,320 --> 03:23:45,760 DEFICIENCY AND IN MOUSE MODELS 4523 03:23:45,760 --> 03:23:50,200 WITH THE DISEASE AND WE HAVE 4524 03:23:50,200 --> 03:23:54,960 THROW TREATMENTS AT LEAST THAT T 4525 03:23:54,960 --> 03:23:58,040 OF AND BENEFIT WHEN STARTED 4526 03:23:58,040 --> 03:23:59,120 EARLIER ENOUGH BEFORE THE 4527 03:23:59,120 --> 03:24:01,480 DISEASE ONSET AND THERE'S AN A 4528 03:24:01,480 --> 03:24:03,160 NATIONWIDE SCREENING AND TO 4529 03:24:03,160 --> 03:24:05,040 IDENTIFY NEWBORN INFANTS WHO 4530 03:24:05,040 --> 03:24:08,680 WERE AT RISK. 4531 03:24:08,680 --> 03:24:10,480 THE WORK THAT WE DO IS ON THE 4532 03:24:10,480 --> 03:24:13,560 NIH CAMPUS HERE IN BETHESDA AND 4533 03:24:13,560 --> 03:24:16,720 IT'S DIVIDED BETWEEN BUILDINGS 4534 03:24:16,720 --> 03:24:21,520 AND BOTH VERY PORT AT TO BE 4535 03:24:21,520 --> 03:24:23,840 USING THESE FACILITIES FOR 4536 03:24:23,840 --> 03:24:27,200 LABORATORY RESEARCH AND THE 4537 03:24:27,200 --> 03:24:28,880 NEURO SIGN RESEARCH CENTER SHOWN 4538 03:24:28,880 --> 03:24:30,640 ON THE NIH CAMPUS LOOKS LIKE A 4539 03:24:30,640 --> 03:24:34,520 NIGHT WHEN PEOPLE FORGOT TO TURN 4540 03:24:34,520 --> 03:24:35,440 THE LET'S OFF AND IT'S MY OFFICE 4541 03:24:35,440 --> 03:24:39,320 IN THE CORNER BUT IT'S WONDERFUL 4542 03:24:39,320 --> 03:24:41,400 FACILITY TO DO BABY SEARCH AND 4543 03:24:41,400 --> 03:24:44,120 APPLIED RESEARCH RELATED TO 4544 03:24:44,120 --> 03:24:45,160 NEUROLOGICAL DEDISEASES AND THE 4545 03:24:45,160 --> 03:24:48,920 NIH CLINICAL CENTER OUR BUILDING 4546 03:24:48,920 --> 03:24:50,440 10 WHICH IS ONE OF THE LARGEST 4547 03:24:50,440 --> 03:24:53,280 IF NOT THE LARGEST RESEARCH 4548 03:24:53,280 --> 03:24:56,440 HOSPITALS IN THE WORLD AND IT'S 4549 03:24:56,440 --> 03:25:00,240 A WONDERFUL FACILITY TO DO 4550 03:25:00,240 --> 03:25:03,040 CLINICAL STUDIES AND 4551 03:25:03,040 --> 03:25:04,600 INTERCEPTIONSAL STUDIES PHASE 4552 03:25:04,600 --> 03:25:08,040 ONE AND PHASE TWO AND IN 4553 03:25:08,040 --> 03:25:09,560 PARTICULAR, AND CLINICAL PROOF 4554 03:25:09,560 --> 03:25:10,720 CONCEPT STUDIES WITH THE 4555 03:25:10,720 --> 03:25:12,040 DISEASES THAT WE WORK ON AND WE 4556 03:25:12,040 --> 03:25:13,680 DON'T HAVE TO APPLY FOR FUNDING 4557 03:25:13,680 --> 03:25:15,440 WE HAVE TO GET APPROVAL AND 4558 03:25:15,440 --> 03:25:17,240 START THE STUDY AND WE ALSO HAVE 4559 03:25:17,240 --> 03:25:18,760 THE OPPORTUNITY TO COLLABORATE 4560 03:25:18,760 --> 03:25:21,000 WITH EXTRA MUR AVENUE 4561 03:25:21,000 --> 03:25:22,440 INVESTIGATORS AND GETTING THOSE 4562 03:25:22,440 --> 03:25:25,360 STUDIES DONE AND TO SHARE IS AND 4563 03:25:25,360 --> 03:25:29,400 PROVIDE FUNDING FOR THEM. 4564 03:25:29,400 --> 03:25:33,880 I JUST LISTED HERE SOME OF THE 4565 03:25:33,880 --> 03:25:35,600 INTRAMURAL CLINICAL 4566 03:25:35,600 --> 03:25:37,640 INVESTIGATORS WITH THEIR DISEASE 4567 03:25:37,640 --> 03:25:41,640 AREAS AND I THINK ALL OF US CAN 4568 03:25:41,640 --> 03:25:44,760 BE VERY USEFUL PARTNERS FOR 4569 03:25:44,760 --> 03:25:46,440 NON-PROFIT GROUPS SUCH AS A 4570 03:25:46,440 --> 03:25:50,320 REPRESENTATIVE IN THIS FORM AND 4571 03:25:50,320 --> 03:25:52,320 COLLABORATORS FOR ACADEMIC 4572 03:25:52,320 --> 03:25:53,160 INVESTIGATORS AS WELL THROUGH 4573 03:25:53,160 --> 03:26:01,560 SHARED FUNDING AND THIS IS A 4574 03:26:01,560 --> 03:26:03,520 SPECIALIST IN PETE ADD TRICK 4575 03:26:03,520 --> 03:26:07,000 NEWER LOGIC DISEASES AND MYSELF 4576 03:26:07,000 --> 03:26:10,920 FOCUSING ON A RANGE OF NEURO 4577 03:26:10,920 --> 03:26:13,000 MUSE KULAR AND PARTICULARLY RARE 4578 03:26:13,000 --> 03:26:15,280 HEREDITARY MOTOR NUR ON DISEASES 4579 03:26:15,280 --> 03:26:20,480 LIKE KENNEDY DISEASE AND ALS4 4580 03:26:20,480 --> 03:26:24,000 AND 8 AND ILS2 AND DAVID 4581 03:26:24,000 --> 03:26:28,440 GOLDSTEIN WORKS ON AUTONOMIC 4582 03:26:28,440 --> 03:26:30,160 DISORDERS AND THERE'S A STROKE 4583 03:26:30,160 --> 03:26:31,680 BRANCH AND MARK HAS A LONG AND 4584 03:26:31,680 --> 03:26:33,320 VERY PRODUCTIVE CAREER IN 4585 03:26:33,320 --> 03:26:36,240 MOVEMENT DISORDERS RESEARCH AND 4586 03:26:36,240 --> 03:26:38,400 NEW RECRUIT WORKS ON PARK 4587 03:26:38,400 --> 03:26:41,240 INSINCE DISEASE AND JUVENILE 4588 03:26:41,240 --> 03:26:42,800 VARIANTS AND THE CLINICAL 4589 03:26:42,800 --> 03:26:44,440 DIRECTOR SO HE IS IN CHARGE OF 4590 03:26:44,440 --> 03:26:47,960 ALL THIS GROUP AND HAS A 4591 03:26:47,960 --> 03:26:49,480 PARTICULAR INTEREST IN NEURON 4592 03:26:49,480 --> 03:26:51,960 INFECTIOUS DISEASES SUCH AS 4593 03:26:51,960 --> 03:26:55,160 COVID AND HIV. 4594 03:26:55,160 --> 03:26:57,880 DAVE REICH HAS BEEN IN THE 4595 03:26:57,880 --> 03:27:02,720 BRANCH WITH A FOCUS ON MULTIPLE 4596 03:27:02,720 --> 03:27:04,560 SCLEROSIS AND SONIA SCHOLZ WORKS 4597 03:27:04,560 --> 03:27:09,320 ON LEWY BODY DEMENTIA BETWEEN 4598 03:27:09,320 --> 03:27:11,080 ALZHEIMER'S AND PARKINSON'S AND 4599 03:27:11,080 --> 03:27:13,240 MICHAEL WARD AND A NEW 4600 03:27:13,240 --> 03:27:14,320 UP-AND-COMING INVESTIGATOR IN 4601 03:27:14,320 --> 03:27:18,200 OUR GROUP WHO WORKS ON ALS AND 4602 03:27:18,200 --> 03:27:21,680 IT'S INTIMATELY CONNECTED WITH 4603 03:27:21,680 --> 03:27:24,680 THE INTRAMURAL PROGRAM CALLED 4604 03:27:24,680 --> 03:27:25,520 CARVE A CENTER FOR ALZHEIMER'S 4605 03:27:25,520 --> 03:27:29,720 AND RELATED DISORDERS AND AND HE 4606 03:27:29,720 --> 03:27:34,240 RUNS A SUB CULTURE PROGRAM 4607 03:27:34,240 --> 03:27:35,120 PROJECT THROUGH CARVE AND HE IS 4608 03:27:35,120 --> 03:27:36,320 INVOLVED WITH THAT WHICH IS VERY 4609 03:27:36,320 --> 03:27:38,000 WELL FUNDED THROUGH THE NATIONAL 4610 03:27:38,000 --> 03:27:42,160 INSTITUTE OF AGING AND KAREEM A 4611 03:27:42,160 --> 03:27:44,040 STAR NEUROSURGEON AND WHO IS 4612 03:27:44,040 --> 03:27:45,520 GROUP WORKS ON BRAIN TUMORS AND 4613 03:27:45,520 --> 03:27:48,760 HE IS ALSO INVOLVED IN SURGICAL 4614 03:27:48,760 --> 03:27:50,000 TREATMENT FOR EPILEPSIES SO 4615 03:27:50,000 --> 03:27:51,040 AWFUL THESE PEOPLE ARE PEOPLE 4616 03:27:51,040 --> 03:27:53,040 YOU CAN GET IN TOUCH WITH AND I 4617 03:27:53,040 --> 03:27:55,680 ENCOURAGE YOU TO FORM A WORKING 4618 03:27:55,680 --> 03:27:57,480 RELATIONSHIP WITH THIS 4619 03:27:57,480 --> 03:28:01,760 INVESTIGATORS TO MOVE THE 4620 03:28:01,760 --> 03:28:02,160 FORWARD. 4621 03:28:02,160 --> 03:28:03,640 THERE ARE A NUMBER OF OTHERS WHO 4622 03:28:03,640 --> 03:28:05,360 ARE STAFF CLINICIANS AND 4623 03:28:05,360 --> 03:28:07,840 ASSISTANT CLINICAL INVESTIGATORS 4624 03:28:07,840 --> 03:28:11,520 AND IT'S A USEFUL RESOURCE TO 4625 03:28:11,520 --> 03:28:12,200 TAP INTO. 4626 03:28:12,200 --> 03:28:13,600 SO HOW DO YOU FIND IN GENERAL, 4627 03:28:13,600 --> 03:28:16,080 HOW DO YOU FIND CLINICAL 4628 03:28:16,080 --> 03:28:18,640 ININTEREST MURAL THAT YOU CAN 4629 03:28:18,640 --> 03:28:21,360 WORK AND LOOKING AROUND AT 4630 03:28:21,360 --> 03:28:22,440 DIFFERENT WEB SITES I THOUGHT 4631 03:28:22,440 --> 03:28:24,440 MOST USEFUL IS A WEBSITE ON 4632 03:28:24,440 --> 03:28:26,920 PATIENT RESEARCH AT NINDS AND I 4633 03:28:26,920 --> 03:28:28,440 GIVE THE LINK HERE BUT IF YOU 4634 03:28:28,440 --> 03:28:33,480 JUST GOOGLE ON OUR SEARCH ON 4635 03:28:33,480 --> 03:28:34,840 PATIENT RESEARCH YOU WILL GET 4636 03:28:34,840 --> 03:28:36,120 THE LIST I SHOWED YOU AND THE 4637 03:28:36,120 --> 03:28:37,200 CONTACT INFORMATION HOW TO GET 4638 03:28:37,200 --> 03:28:40,040 IN TOUCH WITH PEOPLE O'ER YOU 4639 03:28:40,040 --> 03:28:41,880 CAN GO TO THE OFFICE OF THE 4640 03:28:41,880 --> 03:28:47,840 CLINICAL DIRECTOR THAT IS Dr. 4641 03:28:47,840 --> 03:28:52,760 AL BYE AND HIS OFFICE CAN SEND 4642 03:28:52,760 --> 03:28:55,320 YOU FURTHER AND JUST SEARCH ON 4643 03:28:55,320 --> 03:28:59,080 CLINICAL DIRECTOR OR SPEAKING OF 4644 03:28:59,080 --> 03:29:00,040 SEARCHES A TRICK I PICKED UP A 4645 03:29:00,040 --> 03:29:01,440 FEW YEARS AGO IS YOU CAN JUST 4646 03:29:01,440 --> 03:29:03,120 PUT IN THE NAME OF YOUR DISEASE 4647 03:29:03,120 --> 03:29:07,280 AND A SEARCH AND THE ZIP CODE 4648 03:29:07,280 --> 03:29:10,360 20892 WHICH IS A UNIQUE ZIP CODE 4649 03:29:10,360 --> 03:29:13,360 FOR THE NIH CAMPUS AND IT'S 4650 03:29:13,360 --> 03:29:16,440 GOING TO TAKE YOU TO 4651 03:29:16,440 --> 03:29:18,560 PUBLICATIONS AND HOME PAGES FOR 4652 03:29:18,560 --> 03:29:20,720 RESEARCHERS AT THE NIH AND 4653 03:29:20,720 --> 03:29:22,520 WHATEVER AREA OF YOUR INTEREST 4654 03:29:22,520 --> 03:29:26,400 AND THEN FINALLY, ALL ELSE 4655 03:29:26,400 --> 03:29:27,920 FAILS, CONTACT ME AND YOU CAN 4656 03:29:27,920 --> 03:29:34,480 SEARCH ON MY NAME. 4657 03:29:34,480 --> 03:29:45,000 AND YOU WILL GET MY E-MAIL THE 4658 03:29:50,840 --> 03:29:54,360 NIH IS A PIECE OF THE JIGSAW 4659 03:29:54,360 --> 03:29:56,240 PUZZLE BUT ANY OTHERS THAT ARE 4660 03:29:56,240 --> 03:29:57,520 SHOWN HERE. 4661 03:29:57,520 --> 03:29:58,720 PARTICULARLY THE DISEASE 4662 03:29:58,720 --> 03:30:05,080 FOUNDATION IS A REPRESENTATIVE 4663 03:30:05,080 --> 03:30:09,280 THEY PUT THE WIND IN OUR SALES 4664 03:30:09,280 --> 03:30:10,720 AND YOU ARE CUSTOMERS AND OUR 4665 03:30:10,720 --> 03:30:13,760 BOSSES BECAUSE OUR FUNDING COMES 4666 03:30:13,760 --> 03:30:16,480 THROUGH CONGRESS WITH HELP FROM 4667 03:30:16,480 --> 03:30:20,240 PATIENT ADVOCACY GROUPS AND WE 4668 03:30:20,240 --> 03:30:21,640 DEPEND ON YOU THROUGH CONGRESS 4669 03:30:21,640 --> 03:30:23,960 AND CONGRESSIONAL APPROPRIATIONS 4670 03:30:23,960 --> 03:30:31,000 AND YOU ARE ALSO DEVOTED TO 4671 03:30:31,000 --> 03:30:32,800 SERVING AND MEETING YOUR NEEDS, 4672 03:30:32,800 --> 03:30:35,200 EFFECTING THOSE EFFECTING 4673 03:30:35,200 --> 03:30:38,200 YOURSELVES OR YOUR CHILDREN AND 4674 03:30:38,200 --> 03:30:39,520 YOUR FAMILY MEMBERS AND WE ALSO 4675 03:30:39,520 --> 03:30:42,800 HAVE TO ENGAGE IN THIS AND I SEE 4676 03:30:42,800 --> 03:30:48,480 IT'S LIKE A RELAY RAISE AND I 4677 03:30:48,480 --> 03:30:52,920 THINK THIS IS TRUE OF ACADEMIC 4678 03:30:52,920 --> 03:30:56,760 RESEARCHERS IN GENERAL AND 4679 03:30:56,760 --> 03:30:57,480 SHOWING EVIDENCE AND THEY'RE 4680 03:30:57,480 --> 03:31:00,360 GOING TO WORK AND THAT STAGE WE 4681 03:31:00,360 --> 03:31:03,320 HAVE TO PASS THE BATON ON TO 4682 03:31:03,320 --> 03:31:04,600 INDUSTRY TO CARRY IT THROUGH TO 4683 03:31:04,600 --> 03:31:06,320 A DRUG YOU CAN GO TO THE 4684 03:31:06,320 --> 03:31:08,800 DRUGSTORE AND GET AND GET THE 4685 03:31:08,800 --> 03:31:13,560 ADMINISTERED IN THE HOSPITAL 20 4686 03:31:13,560 --> 03:31:18,560 GET FDA APPROVAL TO PAY FOR IT 4687 03:31:18,560 --> 03:31:20,280 BUT INTER MIGHT WITH INDUSTRY 4688 03:31:20,280 --> 03:31:22,520 AND IT'S JUST A POINT ON THIS 4689 03:31:22,520 --> 03:31:24,520 SLIDE BUT IMPORTANT RELATIONSHIP 4690 03:31:24,520 --> 03:31:26,440 WITH OUTSIDE ACADEMIC MEDICAL 4691 03:31:26,440 --> 03:31:27,720 CENTER AND NIH IS THE MAIN 4692 03:31:27,720 --> 03:31:29,200 SOURCE OF FUNDING AND MANY OF 4693 03:31:29,200 --> 03:31:35,320 THESE RESEARCHERS AND WE'RE 4694 03:31:35,320 --> 03:31:38,800 HAPPY TO COLLABORATE WITH 4695 03:31:38,800 --> 03:31:40,000 OPPORTUNITIES FOR CO FUNDER AND 4696 03:31:40,000 --> 03:31:41,280 I HOPE I WAS ON TIME. 4697 03:31:41,280 --> 03:31:44,640 I DIDN'T RUN OVER TOO MUCH. 4698 03:31:44,640 --> 03:31:46,240 >> THANK YOU. 4699 03:31:46,240 --> 03:31:48,560 WE'RE GOING TO HOLD ON QUESTIONS 4700 03:31:48,560 --> 03:31:50,360 UNTIL ALL FOUR SPEAKERS HAVE A 4701 03:31:50,360 --> 03:31:51,960 CHANCE TO CHAT AND WHILE YOU ARE 4702 03:31:51,960 --> 03:31:55,640 LISTENING TO ANY OF THESE 4703 03:31:55,640 --> 03:31:56,560 SPEAKERS ININCLUDEDDING, PLEASE 4704 03:31:56,560 --> 03:31:57,880 GO AHEAD AND PUT QUESTIONS IN 4705 03:31:57,880 --> 03:31:59,560 THE CHATBOX AND WE'LL MAKE 4706 03:31:59,560 --> 03:32:00,560 THOUSAND THOSE GET ADDRESSED AS 4707 03:32:00,560 --> 03:32:02,040 MUCH AS TIME ALLOWS AT THE END 4708 03:32:02,040 --> 03:32:03,880 OF THE SESSION AND OUR NEXT 4709 03:32:03,880 --> 03:32:05,920 SPEAK SER Dr. DAVID DIM BRICK 4710 03:32:05,920 --> 03:32:08,840 AND THE CHIEF OF PEDIATRIC NEURO 4711 03:32:08,840 --> 03:32:10,840 SURGERY AND EXECUTIVE VICE-CHAIR 4712 03:32:10,840 --> 03:32:11,800 AT WASHINGTON UNIVERSITY. 4713 03:32:11,800 --> 03:32:13,200 HE ALSO SERVES AS THE 4714 03:32:13,200 --> 03:32:17,520 NEUROSURGEON AND CHIEF AT ST. 4715 03:32:17,520 --> 03:32:22,080 LOUIS CHILDREN'S FONT AND GO 4716 03:32:22,080 --> 03:32:25,000 RIGHT A HEAD, PLEASE, LET ME FOE 4717 03:32:25,000 --> 03:32:27,000 IF YOU HAVE ANY TECHNICAL ISSUES 4718 03:32:27,000 --> 03:32:28,320 WITH MY DECISION AND TODAY MY 4719 03:32:28,320 --> 03:32:30,480 TOPIC IS GOING TO BE THE ROLE 4720 03:32:30,480 --> 03:32:34,640 AND INVOLVEMENT OF NON-PROFIT 4721 03:32:34,640 --> 03:32:38,360 ORGANIZATIONS IN PATIENT 4722 03:32:38,360 --> 03:32:40,760 ORIENTED RESEARCH AND SO I'M 4723 03:32:40,760 --> 03:32:43,960 HAPPY TO TALK TO YOU ABOUT THIS 4724 03:32:43,960 --> 03:32:44,160 TODAY. 4725 03:32:44,160 --> 03:32:51,240 JUST TRYING TO ADD THESE SLIDES 4726 03:32:51,240 --> 03:32:52,960 AND I DON'T KNOW IF I DID THAT 4727 03:32:52,960 --> 03:32:55,000 BUT I HAVE SOME DISCLOSURES THAT 4728 03:32:55,000 --> 03:32:57,840 ARE DEVELOP RANT TODAY AND THIS 4729 03:32:57,840 --> 03:32:59,920 SLIDE JUST KIND OF GOES THROUGH 4730 03:32:59,920 --> 03:33:04,800 FUNDING SOURCE AND SO FOURTH BUT 4731 03:33:04,800 --> 03:33:06,320 THE RELEVANT DISCLOSURES WHICH 4732 03:33:06,320 --> 03:33:08,000 I'LL TRY TO GET BACK TO AND KEEP 4733 03:33:08,000 --> 03:33:14,720 MY STREAM OF THOUGHT INCLUDED 4734 03:33:14,720 --> 03:33:18,000 AND WHEN EXECUTIVE COMMITTEE AND 4735 03:33:18,000 --> 03:33:19,240 AND FOUNDATION AND I JUST WANT 4736 03:33:19,240 --> 03:33:20,600 TO SHOUT OUT TO THEM BECAUSE 4737 03:33:20,600 --> 03:33:23,600 THEY'RE ON THE LINE TODAY AND 4738 03:33:23,600 --> 03:33:28,040 MARY, KAITLYN AND DORTHY THANK 4739 03:33:28,040 --> 03:33:36,000 YOU FOR ATTENDING ONE OF THE 4740 03:33:36,000 --> 03:33:39,040 MOST CONTROVERSIAL QUESTIONS IN 4741 03:33:39,040 --> 03:33:45,400 PEDIATRIC NEURO SURGERY AROUND 4742 03:33:45,400 --> 03:33:55,920 THE THEY ARE DEPLOYED FOR THAT 4743 03:34:05,080 --> 03:34:08,280 AND ONE IS IS I BONE AND BIGMENT 4744 03:34:08,280 --> 03:34:10,320 AND THE OTHER ONE IS A STEP 4745 03:34:10,320 --> 03:34:20,760 FURTHER WHERE WE OPEN UP WE 4746 03:34:34,800 --> 03:34:36,240 APPLIED THROUGH THE INSTITUTE 4747 03:34:36,240 --> 03:34:37,880 AND IN THE FUNDING WAS TO 4748 03:34:37,880 --> 03:34:39,720 PERFORM A RANDOMIZED CONTROL 4749 03:34:39,720 --> 03:34:40,800 TRIAL COMPARE THESE TWO 4750 03:34:40,800 --> 03:34:42,240 DIFFERENT OPERATIONS WHICH HAVE 4751 03:34:42,240 --> 03:34:45,040 A DIFFERENT RISK PROFILE AND A 4752 03:34:45,040 --> 03:34:47,800 DIFFERENT EFFICACY PROFILE AND 4753 03:34:47,800 --> 03:34:49,800 I'M GOING TO SAY I'M HAVING 4754 03:34:49,800 --> 03:34:52,960 TROUBLE MOVING THEM FORWARD AND 4755 03:34:52,960 --> 03:34:55,600 THANK YOU. 4756 03:34:55,600 --> 03:34:56,840 AND THIS TRIAL WAS SUPPORTED 4757 03:34:56,840 --> 03:34:58,760 THROUGH ALL THE MAJOR AT TRICK 4758 03:34:58,760 --> 03:35:03,120 ORGANIZATION AND IT'S A CLUSTER 4759 03:35:03,120 --> 03:35:13,640 RANDOMIZED AND A HIGH-QUALITY 4760 03:35:39,200 --> 03:35:48,680 LAST YOU CAN SEE THE ENROLLMENT 4761 03:35:48,680 --> 03:35:50,320 IN BLUE AND THERE ARE A LOT OF 4762 03:35:50,320 --> 03:35:54,120 FACTORS INVOLVED IN THAT AND ONE 4763 03:35:54,120 --> 03:35:55,400 KEY THING AND THIS IS WHAT I 4764 03:35:55,400 --> 03:36:05,920 WANT TO HIGHLIGHT HERE IS THAT 4765 03:36:21,880 --> 03:36:23,400 THEY ARE DEVELOP RANT FROM THE 4766 03:36:23,400 --> 03:36:24,720 PATIENT COMMUNITY AND DO YOU 4767 03:36:24,720 --> 03:36:26,080 MIND ADVANCE INTERESTING IF YOU 4768 03:36:26,080 --> 03:36:30,160 DON'T MIND I'M GOING 20 TRY THIS 4769 03:36:30,160 --> 03:36:32,120 METHOD. 4770 03:36:32,120 --> 03:36:33,560 AND THANK YOU AND SO WE WENT 4771 03:36:33,560 --> 03:36:34,800 THROUGH A NUMBER OF DIFFERENT 4772 03:36:34,800 --> 03:36:37,960 ENGAGEMENT ACTIVITIES TO TRY TO 4773 03:36:37,960 --> 03:36:39,360 FOSTER SUPPORT IN THE TRIAL AND 4774 03:36:39,360 --> 03:36:42,640 CAN YOU ADVANCE THE SLIDES MORE 4775 03:36:42,640 --> 03:36:44,760 AND THIS IS ONE EXAMPLE OF THIS 4776 03:36:44,760 --> 03:36:51,800 WAS PUT ON BOBBIE JONES AND OUR 4777 03:36:51,800 --> 03:37:00,240 SAINT AND FLOOR THIS AND WE 4778 03:37:00,240 --> 03:37:01,880 REALLY WORKED ON THE LEGAL 4779 03:37:01,880 --> 03:37:03,040 SUPPORT FOR FAMILIES AND DEALING 4780 03:37:03,040 --> 03:37:06,800 WITH A CHILDHOOD IS DIS ABILITY 4781 03:37:06,800 --> 03:37:08,600 AND THE EDUCATIONAL SUPPORT AND 4782 03:37:08,600 --> 03:37:11,920 YOU CAN GO FORWARD ONE NOW AND 4783 03:37:11,920 --> 03:37:13,200 ONE OF THE THINGS THAT TURNED 4784 03:37:13,200 --> 03:37:18,280 OUT TO BE ABSOLUTELY KEY IN OUR 4785 03:37:18,280 --> 03:37:22,680 ENROLLMENT AND OUR RELATIONSHIP 4786 03:37:22,680 --> 03:37:23,880 WITH BOBBIE JONES AND WHAT 4787 03:37:23,880 --> 03:37:25,600 HAPPENED EARLY IN THE TRIAL ON 4788 03:37:25,600 --> 03:37:26,960 THUR SOCIAL MEDIA ACCOUNTS THEY 4789 03:37:26,960 --> 03:37:31,400 STARTED TO SEE SOME NEGATIVE OR 4790 03:37:31,400 --> 03:37:32,480 NEAR NEGATIVE COMMENTS ABOUT 4791 03:37:32,480 --> 03:37:33,520 PARTICIPATING IN THE CLINICAL 4792 03:37:33,520 --> 03:37:35,080 TRIAL AND WHAT THEY DID WAS THEY 4793 03:37:35,080 --> 03:37:38,760 REALLY HELPED US TO DISPEL 4794 03:37:38,760 --> 03:37:40,080 NEGATIVE FEELINGS REGARDING 4795 03:37:40,080 --> 03:37:43,800 CLINICAL RESEARCH AND THROUGH 4796 03:37:43,800 --> 03:37:45,280 ON-LINE CAMPAIGNS HERE IS AN 4797 03:37:45,280 --> 03:37:48,760 EXAMPLE AND YOU CAN ADVANCE AND 4798 03:37:48,760 --> 03:37:52,240 THEY HELPED US TO CREATE PATIENT 4799 03:37:52,240 --> 03:37:54,920 BROCHURES TO REASSURE PATIENTS 4800 03:37:54,920 --> 03:37:56,040 THAT THERE'S POINTS BETWEEN 4801 03:37:56,040 --> 03:37:56,800 THESE TWO DIFFERENT PROCEDURES 4802 03:37:56,800 --> 03:37:58,400 AND WE REALLY NEEDED TO SUPPORT 4803 03:37:58,400 --> 03:38:00,200 THE RESEARCH THERE AND THERE'S 4804 03:38:00,200 --> 03:38:02,320 AN EXAMPLE OF PATIENT PRO SURE 4805 03:38:02,320 --> 03:38:11,640 IF YOU CAN ADVANCE ONE MORE 4806 03:38:11,640 --> 03:38:22,200 SLIDE, WITHOUT THEM WE WON HAVE 4807 03:38:27,240 --> 03:38:28,120 MET OUR IT WOULD HAVE BEEN 4808 03:38:28,120 --> 03:38:30,480 UNDER-POWERED SO YOU CAN MOVE 4809 03:38:30,480 --> 03:38:31,280 FORWARD, PLEASE. 4810 03:38:31,280 --> 03:38:36,920 THE SECOND EXAMPLE IS ONE IN 4811 03:38:36,920 --> 03:38:37,280 HYDROCEPHALUS. 4812 03:38:37,280 --> 03:38:39,600 YOU KNOW THE TWO KEY TREATMENTS 4813 03:38:39,600 --> 03:38:41,520 FOR HYDROCEPHALUS IN CHILDREN IS 4814 03:38:41,520 --> 03:38:43,680 YOU MAY BE AWARE IS SHUNTING, AS 4815 03:38:43,680 --> 03:38:46,120 YOU CAN SEE ON THE LEFT WHICH IS 4816 03:38:46,120 --> 03:38:50,000 IS A LITTLE TUBE OR A NEW 4817 03:38:50,000 --> 03:38:51,320 PROCEDURE WHICH WE'LL USE THE A 4818 03:38:51,320 --> 03:38:54,480 ABBREVIATION OF ETV-CPC FOR AND 4819 03:38:54,480 --> 03:38:58,880 YOU CAN ADVANCE ONE MORE SLIDE 4820 03:38:58,880 --> 03:39:01,920 THERE AND PATIENT POPULATIONS 4821 03:39:01,920 --> 03:39:04,400 FOR THIS AND WHAT IS HAPPENING 4822 03:39:04,400 --> 03:39:05,920 IS DESPITE A LACK OF EVIDENCE 4823 03:39:05,920 --> 03:39:07,080 THAT ONE IS BETTER THAN THE 4824 03:39:07,080 --> 03:39:08,480 OTHER THERE'S A GLOBAL RISE OF 4825 03:39:08,480 --> 03:39:12,120 THE USE OF THIS PROCEDURE AND 4826 03:39:12,120 --> 03:39:15,800 YET, THE VEN TRICK ALS, THE 4827 03:39:15,800 --> 03:39:17,360 FLUID CAVITIES REMAIN LARGE WITH 4828 03:39:17,360 --> 03:39:27,880 ATV SO WE'RE NOT SURE WE WORKED 4829 03:39:31,480 --> 03:39:34,440 WITH THE HYDROCEPHALUS AND 4830 03:39:34,440 --> 03:39:36,680 BEFORE WE DESIGNED THE TRIAL 4831 03:39:36,680 --> 03:39:38,680 WHAT'S MOST IMPORTANT TO 4832 03:39:38,680 --> 03:39:40,320 FAMILIES WITH HYDROCEPHALUS AND 4833 03:39:40,320 --> 03:39:43,120 THE MOST IMPORTANT FACTOR WAS 4834 03:39:43,120 --> 03:39:43,960 COGNITIVE FUNCTION. 4835 03:39:43,960 --> 03:39:46,720 SO THERE WAS A STRONG DESIRE FOR 4836 03:39:46,720 --> 03:39:49,520 FAMILIES TO HAVE THEIR CHILDREN 4837 03:39:49,520 --> 03:39:50,960 BE FREE OF SHUNTS BUT THEY WERE 4838 03:39:50,960 --> 03:39:52,200 EVEN WILLING TO UNDERGO MORE 4839 03:39:52,200 --> 03:39:58,520 THAN ONE SURGICAL PROCEDURE TO 4840 03:39:58,520 --> 03:40:01,760 BE SHUNT FREE AND IF IT DIDN'T 4841 03:40:01,760 --> 03:40:02,920 EFFECT COGNITIVE FUNCTION AND 4842 03:40:02,920 --> 03:40:04,920 IT'S A KEY FACTOR IN THE 4843 03:40:04,920 --> 03:40:06,120 DECISION-MAKING HERE SO WE 4844 03:40:06,120 --> 03:40:08,640 DESIGNED AN RCT TO HELP US TEST 4845 03:40:08,640 --> 03:40:09,920 THIS AND THIS LIGHT ON THE RIGHT 4846 03:40:09,920 --> 03:40:11,320 I JUST WANT TO SAY THAT ONE 4847 03:40:11,320 --> 03:40:12,960 THING THAT HA HAS DONE REALLY 4848 03:40:12,960 --> 03:40:15,440 WELL IS THEY'VE CREATED A SERIES 4849 03:40:15,440 --> 03:40:19,600 OF INTER LACED EFFORT. 4850 03:40:19,600 --> 03:40:21,120 ONE IS CRITICAL RESEARCH 4851 03:40:21,120 --> 03:40:22,680 NETWORKS AND A DISCOVERY SCIENCE 4852 03:40:22,680 --> 03:40:26,240 NETWORK AND THERE'S THE PATIENT 4853 03:40:26,240 --> 03:40:27,600 POWERED REGISTRY WHICH IS 4854 03:40:27,600 --> 03:40:29,880 HYDROCEPHALUS ASSOCIATION 4855 03:40:29,880 --> 03:40:31,440 PATIENT-POWERED I'M NOT SURE OF 4856 03:40:31,440 --> 03:40:33,920 THE INE ARE SO YOU CAN GO 4857 03:40:33,920 --> 03:40:34,720 FORWARD, PLEASE. 4858 03:40:34,720 --> 03:40:38,000 SO WE DO HAVE THIS RCT NOW THAT 4859 03:40:38,000 --> 03:40:39,400 REALLY TAKES THE INFORMATION 4860 03:40:39,400 --> 03:40:42,440 THAT WE GOT FROM THE 4861 03:40:42,440 --> 03:40:45,880 HYDROCEPHALUS SU SURVEY TO DESIN 4862 03:40:45,880 --> 03:40:49,200 THIS RCT WHICH IS U01 FUNDED 4863 03:40:49,200 --> 03:40:51,720 THROUGH THE NINDS AND THE 4864 03:40:51,720 --> 03:40:53,360 PRIMARY OUTCOMES WHICH WAS 4865 03:40:53,360 --> 03:40:55,080 GENERATED WITH THAT INFORMATION 4866 03:40:55,080 --> 03:40:57,560 FROM HA IS THE PRIMARY OUTCOME 4867 03:40:57,560 --> 03:40:59,760 IS COGNITIVE OUTCOME AT 12 4868 03:40:59,760 --> 03:41:01,680 MONTHS SO FOR NEUROSURGERY WE 4869 03:41:01,680 --> 03:41:04,360 MIGHT SAY THE PRIMARY OUTCOME 4870 03:41:04,360 --> 03:41:06,000 WOULD BE SHUNT REVISION OR 4871 03:41:06,000 --> 03:41:08,240 INFECTION OR SO FOURTH BUT SO I 4872 03:41:08,240 --> 03:41:10,960 DO WANT TO SAY THANK YOU FOR ALL 4873 03:41:10,960 --> 03:41:12,840 THE SUPPORT FOR THE 4874 03:41:12,840 --> 03:41:13,800 HYDROCEPHALUS ASSOCIATION AND I 4875 03:41:13,800 --> 03:41:15,520 CAN SEE SOME OF THE MEMBERS ARE 4876 03:41:15,520 --> 03:41:18,520 HERE O AN AS WELL I'M GRATEFUL 4877 03:41:18,520 --> 03:41:20,040 TO BE INVOLVED WITH THIS 4878 03:41:20,040 --> 03:41:21,080 INFORMATION WITH THIS 4879 03:41:21,080 --> 03:41:22,520 ORGANIZATION AND IN FACT I'M ON 4880 03:41:22,520 --> 03:41:24,320 THE BOARD OF DIRECTORS AS I SAID 4881 03:41:24,320 --> 03:41:26,560 BEFORE AND WE JUST HAD OUR 4882 03:41:26,560 --> 03:41:27,720 NATIONAL CONFERENCE THE LAST 4883 03:41:27,720 --> 03:41:29,720 WEEKEND WHICH IS A SUCCESS SO 4884 03:41:29,720 --> 03:41:33,920 CONGRATULATIONS SO YOU CAN MOVE 4885 03:41:33,920 --> 03:41:42,080 FORWARD, PLEASE. 4886 03:41:42,080 --> 03:41:44,880 I WANT TO SAY IN 2022, YOU JUST 4887 03:41:44,880 --> 03:41:49,320 SAW A SIMILAR IMAGE IN KEN'S 4888 03:41:49,320 --> 03:41:51,280 PRESENTATION BUT IN 2022, TO 4889 03:41:51,280 --> 03:41:53,240 MAKE THE KINDS OF ADVANCES AND 4890 03:41:53,240 --> 03:41:54,520 SCIENCE AND CLINICAL MEDICINE 4891 03:41:54,520 --> 03:41:58,000 THAT WE NEED TO, IT REALLY TAKES 4892 03:41:58,000 --> 03:42:02,320 A TEAM AND SO THAT TEAM IS 4893 03:42:02,320 --> 03:42:05,520 PEOPLE WITH MULTIPLE DIFFERENT 4894 03:42:05,520 --> 03:42:07,640 SPECIALITIES WITH DIFFERENT 4895 03:42:07,640 --> 03:42:09,680 EXPERIENCES AND DIVERSE SKILLS 4896 03:42:09,680 --> 03:42:17,000 AND ALL FOCUSED ON A COMMON GOAL 4897 03:42:17,000 --> 03:42:25,480 AND AND THEY ARE KEY PLAYNESS 4898 03:42:25,480 --> 03:42:27,720 OUT WE DO TEAM SIGNS AND WE HAVE 4899 03:42:27,720 --> 03:42:30,600 CLINICAL TRIALISTS AND CLINICAL 4900 03:42:30,600 --> 03:42:32,000 EXPERTS AND THEN A KEY PIECE OF 4901 03:42:32,000 --> 03:42:33,680 THE PUZZLE IS INPUT FROM 4902 03:42:33,680 --> 03:42:36,320 PATIENTS AND ADVOCACY GROUPS AND 4903 03:42:36,320 --> 03:42:38,240 WITH THAT I'LL STOP AND I'LL 4904 03:42:38,240 --> 03:42:39,520 WAIT FOR THE QUESTIONS TO COME 4905 03:42:39,520 --> 03:42:41,320 UP DURING QUESTION PERIOD LATER 4906 03:42:41,320 --> 03:42:46,320 AND THANK YOU SUCH FOR YOUR 4907 03:42:46,320 --> 03:42:46,640 ATTENTION. 4908 03:42:46,640 --> 03:42:48,440 >> IT'S INTERESTING TO SEE THE 4909 03:42:48,440 --> 03:42:50,920 EXACT SAME META FOR FOR YOURSELF 4910 03:42:50,920 --> 03:42:52,080 ACROSS DIFFERENT TYPES OF 4911 03:42:52,080 --> 03:42:54,640 STAKEHOLDERS AND I THINK IT'S 4912 03:42:54,640 --> 03:42:56,440 GOING TO BE SOMETHING WE SHOULD 4913 03:42:56,440 --> 03:42:59,440 CIRCLE BACK TO ABOUT THE WAYS OF 4914 03:42:59,440 --> 03:43:01,040 NON PROFITS CAN HELP WITH THOSE 4915 03:43:01,040 --> 03:43:05,560 DIFFERENT PIECES FITTING 4916 03:43:05,560 --> 03:43:05,840 TOGETHER. 4917 03:43:05,840 --> 03:43:07,560 WE HAVE THE CO DIRECTOR THE 4918 03:43:07,560 --> 03:43:08,640 NEUROLOGICAL INSTITUTE AT THE 4919 03:43:08,640 --> 03:43:10,160 MASSACHUSETTS GENERAL HOSPITAL 4920 03:43:10,160 --> 03:43:11,720 AND HARVARD MEDICAL SCHOOL HER 4921 03:43:11,720 --> 03:43:16,240 RESEARCH IS ON CLINICAL TRIALS 4922 03:43:16,240 --> 03:43:17,400 AND THERAPY DEVELOPMENT. 4923 03:43:17,400 --> 03:43:18,000 TAKE IT AWAY. 4924 03:43:18,000 --> 03:43:19,560 >> THANK YOU SO MUCH AND IT'S 4925 03:43:19,560 --> 03:43:20,960 SUCH A PLEASURE TO BE HERE WITH 4926 03:43:20,960 --> 03:43:25,040 ALL OF YOU AND AS YOU SAID, A 4927 03:43:25,040 --> 03:43:27,880 CLINICAL TRIAL IS FOCUSING ON 4928 03:43:27,880 --> 03:43:30,320 ALS AND TODAY I WAS ASKED TO 4929 03:43:30,320 --> 03:43:33,160 REFLECT AN THE IMPORTANCE OF OUR 4930 03:43:33,160 --> 03:43:34,320 RELATIONSHIPS WE FOUNDATIONS SO 4931 03:43:34,320 --> 03:43:38,680 I WANT TO FOCUS ON THAT AND 4932 03:43:38,680 --> 03:43:42,800 START FROM THE BEGINNING OF MY 4933 03:43:42,800 --> 03:43:48,200 CAREER WHERE IT'S BUILDING ON 4934 03:43:48,200 --> 03:43:53,000 THE SAME META FOR WE'RE HERE 4935 03:43:53,000 --> 03:44:03,480 BECAUSE OF OUR AND FOUNDATIONS 4936 03:44:05,720 --> 03:44:07,400 WE ARE ALL WORKING FOR THE SAME 4937 03:44:07,400 --> 03:44:11,560 GOAL SO THE WORK I'VE BEEN DOING 4938 03:44:11,560 --> 03:44:14,520 DID REALLY COLLABORATIVE BETWEEN 4939 03:44:14,520 --> 03:44:17,960 THE FDA SCIENTISTS AND 4940 03:44:17,960 --> 03:44:19,000 FOUNDATIONS HAVE BEEN SUPPORTING 4941 03:44:19,000 --> 03:44:20,240 MANY OF OUR ACTIVITIES AND I 4942 03:44:20,240 --> 03:44:23,000 WANT TO TALK ABOUT A DIFFERENT 4943 03:44:23,000 --> 03:44:24,440 CONTEXT AND DIFFERENT WAYS THAT 4944 03:44:24,440 --> 03:44:26,800 FOUNDATIONS CAN SUPPORT ACADEMIC 4945 03:44:26,800 --> 03:44:29,600 PHYSICIAN INVESTIGATORS LIKE 4946 03:44:29,600 --> 03:44:30,040 MYSELF. 4947 03:44:30,040 --> 03:44:33,000 SO GOING BACK TO THE FINING, I'M 4948 03:44:33,000 --> 03:44:34,880 DOING CLINICAL TRIALS AS MY MAIN 4949 03:44:34,880 --> 03:44:36,200 OCCUPATION GOES BACK TO A 4950 03:44:36,200 --> 03:44:40,560 CLINICAL SCIENTIST DEVELOPMENT 4951 03:44:40,560 --> 03:44:42,240 AWARD I GOT IN 2017 AND I'M 4952 03:44:42,240 --> 03:44:43,920 THERE IN THE MIDDLE YOU MAY 4953 03:44:43,920 --> 03:44:44,960 NOTICE DIFFERENT HAIR COLOR BUT 4954 03:44:44,960 --> 03:44:46,520 I CHANGE THAT FREQUENTLY SO I'M 4955 03:44:46,520 --> 03:44:51,600 IN THE MIDDLE WITH MANY OTHERS 4956 03:44:51,600 --> 03:44:53,280 ARE STILL GREAT FRIENDS AND 4957 03:44:53,280 --> 03:44:55,240 COLLABORATORS AND WE REALLY HAVE 4958 03:44:55,240 --> 03:44:58,200 A CLASS OF FUNDED INVESTIGATORS 4959 03:44:58,200 --> 03:44:59,960 AND STARTING TOGETHER IN 2017 4960 03:44:59,960 --> 03:45:01,480 AND EVERYONE HAS BEEN 4961 03:45:01,480 --> 03:45:03,600 SPECIALIZING IN DIFFERENT AND 4962 03:45:03,600 --> 03:45:05,440 NEUROLOGICAL AREAS AND THE 4963 03:45:05,440 --> 03:45:07,080 DEVELOPMENT AWARD I GOT WAS 4964 03:45:07,080 --> 03:45:09,440 SUPPORTED BY THE ALS ASSOCIATION 4965 03:45:09,440 --> 03:45:10,720 IN COLLABORATION WITH THE 4966 03:45:10,720 --> 03:45:12,880 AMERICAN ACADEMY OF NEUROLOGY 4967 03:45:12,880 --> 03:45:13,920 AND THE AMERICAN BRAIN 4968 03:45:13,920 --> 03:45:15,880 FOUNDATION AND IT'S REALLY 4969 03:45:15,880 --> 03:45:17,280 WONDERFUL THAT DIFFERENT 4970 03:45:17,280 --> 03:45:18,720 ASSOCIATIONS COME TOGETHER TO 4971 03:45:18,720 --> 03:45:21,480 FUND THIS SPECIFIC RESEARCH AND 4972 03:45:21,480 --> 03:45:23,680 IN MY CASE SPECIFICALLY, I 4973 03:45:23,680 --> 03:45:27,200 FINISHED MY TRAINING INCLUSIVE 4974 03:45:27,200 --> 03:45:28,520 RESIDENTIAL BOARD CERTIFICATES, 4975 03:45:28,520 --> 03:45:30,240 ET CETERA, WHEN SOMEONE FINISHES 4976 03:45:30,240 --> 03:45:32,800 THE TRAINING AS A PHYSICIAN 4977 03:45:32,800 --> 03:45:34,800 SCIENTIST IT'S A TIME IN ONES' 4978 03:45:34,800 --> 03:45:36,600 CAREER WHERE YOU HAVE TO GET 4979 03:45:36,600 --> 03:45:38,600 PROTECTIVE TIME TO REALLY 4980 03:45:38,600 --> 03:45:49,000 DEVELOP EXPERTISE AND A 4981 03:46:26,960 --> 03:46:28,120 PHARMACEUTICAL COMPANY IN THE 4982 03:46:28,120 --> 03:46:30,560 BOSTON AREA BUT THE FUNDING, THE 4983 03:46:30,560 --> 03:46:32,320 INITIAL FUNDING FOR SOME OF THE 4984 03:46:32,320 --> 03:46:34,560 INITIAL EXPERIMENT THE SUCH AS 4985 03:46:34,560 --> 03:46:37,040 TOXICOLOGY AND SOME OF THE 4986 03:46:37,040 --> 03:46:39,000 INITIAL INFRASTRUCTURE GRANTS 4987 03:46:39,000 --> 03:46:41,760 FOR THE TRIAL AND WAS FUNDED 4988 03:46:41,760 --> 03:46:51,880 ACTUALLY BY A FOUNDATION AND 4989 03:46:51,880 --> 03:46:52,480 THIS TRIAL WOULD HAVE NEVER 4990 03:46:52,480 --> 03:46:53,200 HAPPENED WITHOUT THE HELP AND 4991 03:46:53,200 --> 03:46:54,840 NOW AFTER THAT, AFTER THE 4992 03:46:54,840 --> 03:46:55,920 PROVIDED THE FUNDING, THE 4993 03:46:55,920 --> 03:46:57,800 COMPANY WENT ON TO SECURE 4994 03:46:57,800 --> 03:46:59,920 ADDITIONAL FUNDING OF VENTURE 4995 03:46:59,920 --> 03:47:01,240 CAPITOL, ET CETERA, THEY DID A 4996 03:47:01,240 --> 03:47:03,720 GREAT JOB EXPANDING THE TRIAL 4997 03:47:03,720 --> 03:47:06,440 AND HERE WE ARE AT FIVE YEARS 4998 03:47:06,440 --> 03:47:08,200 LATER WHERE THE DRUG THAT WAS 4999 03:47:08,200 --> 03:47:09,760 TESTED IN THAT TRIAL WAS 5000 03:47:09,760 --> 03:47:12,640 ACTUALLY APPROVED BY HEALTH 5001 03:47:12,640 --> 03:47:14,760 CANADA THAT HAPPENED A FEW WEEKS 5002 03:47:14,760 --> 03:47:16,760 AGO AND WE EXPECT THE FDA 5003 03:47:16,760 --> 03:47:17,840 DECISION BY SEPTEMBER AND 5004 03:47:17,840 --> 03:47:19,680 THERE'S AN ADDITIONAL CONFIRM 5005 03:47:19,680 --> 03:47:27,600 TORI TRIAL THAT'S ON GOING IN 5006 03:47:27,600 --> 03:47:33,720 EUROPE. 5007 03:47:33,720 --> 03:47:35,040 IT HELPED GET THIS PROGRAM OFF 5008 03:47:35,040 --> 03:47:36,600 THE GROUND AND NOW WE'VE BEEN 5009 03:47:36,600 --> 03:47:38,400 APPROVED DRUG IN CANADA AND 5010 03:47:38,400 --> 03:47:48,920 HOPEFULLY APPROVED DRUGS IT'S 5011 03:47:52,080 --> 03:47:55,080 THE FIRST PLATFORM TRIAL FOR ALS 5012 03:47:55,080 --> 03:48:00,240 SO IT'S A LARGE-SCALE TRIAL 5013 03:48:00,240 --> 03:48:00,840 WHERE YOU TUFT DRUGS STATEMENT 5014 03:48:00,840 --> 03:48:02,560 SO RIGHT NOW WE'RE TESTING FIVE 5015 03:48:02,560 --> 03:48:06,960 DRUGS FOR ALS USING THE SAME 5016 03:48:06,960 --> 03:48:07,840 INFRASTRUCTURE AND WE'RE ADDING 5017 03:48:07,840 --> 03:48:09,560 MORE DRUGS TO THE SAME PLATFORM 5018 03:48:09,560 --> 03:48:12,280 AND THE TRIAL IS NOT DIRECTOR 5019 03:48:12,280 --> 03:48:14,760 THE CENTER FOR ALS AND GENERAL 5020 03:48:14,760 --> 03:48:18,480 WHERE I'M SPEAKING FROM AND THE 5021 03:48:18,480 --> 03:48:20,400 REASON THERE ARE LOGOS ON THE 5022 03:48:20,400 --> 03:48:22,600 SLIDE IS BECAUSE THIS IS TEAM 5023 03:48:22,600 --> 03:48:24,440 SCIENCE AND WE ARE DOING THIS IN 5024 03:48:24,440 --> 03:48:25,760 COLLABORATION WITH MULTIPLE 5025 03:48:25,760 --> 03:48:26,840 STAKEHOLDERS AND SOME OF THEM 5026 03:48:26,840 --> 03:48:32,280 ARE ACADEMIC DOLL COLLABORATORT 5027 03:48:32,280 --> 03:48:35,240 AS YOU SEE THERE'S A NUMBER OF 5028 03:48:35,240 --> 03:48:38,520 FOUNDATIONS THAT ARE SUPPORTING 5029 03:48:38,520 --> 03:48:41,120 PIECES OF THE TRIAL AND THIS IS 5030 03:48:41,120 --> 03:48:42,280 CRITICAL FOR THE CONDUCT OF THE 5031 03:48:42,280 --> 03:48:44,800 TRIAL ITSELF AND REALLY BEING 5032 03:48:44,800 --> 03:48:46,400 ABLE TO TEST SO MANY DRUGS AT 5033 03:48:46,400 --> 03:48:50,200 THE SAME TIME IN THE SAME 5034 03:48:50,200 --> 03:48:56,360 DISEASE AREA THEY MAY NOT BE 5035 03:48:56,360 --> 03:48:58,520 THEY ARE FOR ANT FOR PATIENTS 5036 03:48:58,520 --> 03:49:01,280 AND ACADEMIC RESEARCHERS SO FOR 5037 03:49:01,280 --> 03:49:03,880 EXAMPLE, FUNDED BY FOUNDATIONS, 5038 03:49:03,880 --> 03:49:05,200 SPECIFIC FOUNDATIONS WE ARE 5039 03:49:05,200 --> 03:49:13,720 FOCUSING ON INCLUSION AND NOW WE 5040 03:49:13,720 --> 03:49:16,320 HAVE AND HAVE PEOPLE WHO CAN 5041 03:49:16,320 --> 03:49:17,600 ANSWER QUESTIONS FROM PATIENTS 5042 03:49:17,600 --> 03:49:22,000 LIFE AT ALL TIMES AND BECAUSE OF 5043 03:49:22,000 --> 03:49:23,800 THEIR HELP, WE HAVE CONNECTED 5044 03:49:23,800 --> 03:49:30,480 WITH THOUSANDS OF PATIENTS OF 5045 03:49:30,480 --> 03:49:31,880 ALS AND THIS IS REALLY 5046 03:49:31,880 --> 03:49:41,200 RESPONSIBLE IN THE LARGE PART IN 5047 03:49:41,200 --> 03:49:45,400 2020 WE'VE HAD GREAT ENROLLMENT 5048 03:49:45,400 --> 03:49:47,640 RATES AND WITH THE PATIENT 5049 03:49:47,640 --> 03:49:48,760 COMMUNITY AND SPECIFIC ASPECTS 5050 03:49:48,760 --> 03:49:55,560 OF THE TRIAL THAT ARE FUNDED BY 5051 03:49:55,560 --> 03:49:56,320 SPECIFIC ORGANIZATIONS AND I'M 5052 03:49:56,320 --> 03:49:57,840 NOT GOING INTO THE DETAILS BUT 5053 03:49:57,840 --> 03:50:01,920 ACCESS IS AND INCLUSION IS 5054 03:50:01,920 --> 03:50:07,280 BIOMARKERS AS OTHER SO I THINK 5055 03:50:07,280 --> 03:50:09,840 FOR THE WORK WE DO COLLABORATING 5056 03:50:09,840 --> 03:50:13,840 WITH FOUNDATIONS AND PATIENTS 5057 03:50:13,840 --> 03:50:15,920 CENTER GROUPS, IT'S CRITICAL AND 5058 03:50:15,920 --> 03:50:20,240 FOR ACADEMIC INVESTIGATORS LIKE 5059 03:50:20,240 --> 03:50:26,800 MYSELF IT'S CRITICAL WITH 5060 03:50:26,800 --> 03:50:33,760 SPECIAL EXPERTISE IN ONE DISEASE 5061 03:50:33,760 --> 03:50:35,680 AREA. 5062 03:50:35,680 --> 03:50:45,440 THAT WAS ALL I HAD TO SHARE OUR 5063 03:50:45,440 --> 03:50:49,240 LAST SPEAKER IS Dr. MIGUEL HE 5064 03:50:49,240 --> 03:50:52,840 IS A ASSOCIATE PROFESSOR IN THE 5065 03:50:52,840 --> 03:50:57,360 GENE THERAPY CENTER AT U.S. CHAN 5066 03:50:57,360 --> 03:51:01,440 MEDICINE SCAL SCHOOL AND AND AS 5067 03:51:01,440 --> 03:51:03,440 WELL AS GENE THEY ARE FEE FOR 5068 03:51:03,440 --> 03:51:05,160 DISEASES AND I WILL LEAVING TO 5069 03:51:05,160 --> 03:51:11,400 HIM TO EXPLAIN MORE. 5070 03:51:11,400 --> 03:51:12,880 GOOD AFTERNOON, EVERYONE. 5071 03:51:12,880 --> 03:51:14,400 I HAVE NO SLIDES TO SHOW THIS 5072 03:51:14,400 --> 03:51:16,040 AFTERNOON SO I DON'T RUN THE 5073 03:51:16,040 --> 03:51:17,680 RISK OF REPEATING SOME OF THE 5074 03:51:17,680 --> 03:51:22,200 ASPECTS THAT MY COLLEAGUES HAVE 5075 03:51:22,200 --> 03:51:23,920 ALREADY TALKED ABOUT IT'S 5076 03:51:23,920 --> 03:51:25,800 COMPLICATED AND THERE'S NO 5077 03:51:25,800 --> 03:51:27,240 QUESTION THAT IN SCIENCE AS WE 5078 03:51:27,240 --> 03:51:28,960 BECOME MORE AND MORE COMPLICATED 5079 03:51:28,960 --> 03:51:30,320 WITH BRINGING TO BEAR LOTS OF 5080 03:51:30,320 --> 03:51:39,320 DIFFERENT TECHNOLOGIES SCIENCE 5081 03:51:39,320 --> 03:51:41,080 IS PART OF A LARGE TEAM TO BRING 5082 03:51:41,080 --> 03:51:42,600 THE TECHNOLOGIES WE HAVE AT HAND 5083 03:51:42,600 --> 03:51:44,400 TO BEAR IN PARTICULAR QUESTIONS 5084 03:51:44,400 --> 03:51:46,640 AND SO, INSTEAD OF GOING ON A 5085 03:51:46,640 --> 03:51:48,200 TANGENT THAT I DID WHEN I SPOKE 5086 03:51:48,200 --> 03:51:50,280 TO PENNY BEFORE, I AM ACTUALLY 5087 03:51:50,280 --> 03:51:51,720 GOING TO TELL YOU MORE ABOUT MY 5088 03:51:51,720 --> 03:51:54,440 EXPERIENCE ON WORKING WITH ONE 5089 03:51:54,440 --> 03:51:56,480 FOUNDATION TO DEVELOP A GENE 5090 03:51:56,480 --> 03:52:03,640 THERAPY FOR A DISEASE THAT IS A 5091 03:52:03,640 --> 03:52:05,160 WELL-KNOWN INHERITED DISEASE 5092 03:52:05,160 --> 03:52:05,880 DESCRIBED MANY YEARS AGO. 5093 03:52:05,880 --> 03:52:08,160 WHEN I STARTED ON THIS PROJECT, 5094 03:52:08,160 --> 03:52:09,680 ACTUALLY IT STARTED FROM THE 5095 03:52:09,680 --> 03:52:11,120 VERY BEGINNING BY BRINGING 5096 03:52:11,120 --> 03:52:13,480 TOGETHER QUITE A FEW SCIENTISTS. 5097 03:52:13,480 --> 03:52:15,160 IT HAD DIFFERENT PIECES OF THE 5098 03:52:15,160 --> 03:52:16,920 PUZZLE, IF YOU WILL, THAT WE'RE 5099 03:52:16,920 --> 03:52:19,720 WORKING ON MOUSE MODELS, LARGE 5100 03:52:19,720 --> 03:52:21,640 ANIMAL MODELS FROM THE BEGINNING 5101 03:52:21,640 --> 03:52:26,680 IT WAS GOAL THE BRINGING 5102 03:52:26,680 --> 03:52:30,640 EVERYONE TOGETHER AND THEY HAD 5103 03:52:30,640 --> 03:52:31,760 PLAY A CENTRAL ROLE BECAUSE I 5104 03:52:31,760 --> 03:52:32,920 WAS ABLE TO BRING TOGETHER 5105 03:52:32,920 --> 03:52:34,120 INDIVIDUALS AND PROVIDE SEED 5106 03:52:34,120 --> 03:52:41,200 FUNDING TO GET THE PROJECT 5107 03:52:41,200 --> 03:52:45,720 STARTED. 5108 03:52:45,720 --> 03:52:47,080 THERE WAS NOTHING IN THE OR EYES 5109 03:52:47,080 --> 03:52:57,400 ON THAT COULD CHANGE THE AND SO 5110 03:52:57,400 --> 03:52:59,400 WE STARTED OUT RESEARCH WITH 5111 03:52:59,400 --> 03:53:02,640 SOME OF THE FUNDING FROM NTSAB 5112 03:53:02,640 --> 03:53:04,520 AND WAS ME AND A BUNCH OF 5113 03:53:04,520 --> 03:53:08,000 DIFFERENT COLLEAGUES ACTUAL WILL 5114 03:53:08,000 --> 03:53:11,960 HE FROM ABROAD AS WELL AND AT 5115 03:53:11,960 --> 03:53:13,240 BEGINNING EVENTUALLY WE WERE 5116 03:53:13,240 --> 03:53:18,560 ABLE TO WRITE A GRANT TO NIH AND 5117 03:53:18,560 --> 03:53:21,760 TO SUPPORT MOVING OUR FINDING 5118 03:53:21,760 --> 03:53:23,200 FROM THE BEACH TOWARDS THE 5119 03:53:23,200 --> 03:53:26,040 CLINIC AND DOING TOXICOLOGY 5120 03:53:26,040 --> 03:53:27,920 STUDIES, ET CETERA. 5121 03:53:27,920 --> 03:53:30,120 WHAT WE FOUND OVER THE COURSE OF 5122 03:53:30,120 --> 03:53:32,640 A COUPLE OF YEARS, IN OUR WORK, 5123 03:53:32,640 --> 03:53:33,960 IS THAT WHILE SOMETHING THAT 5124 03:53:33,960 --> 03:53:39,000 FAPHARMACOLOGISTS KNEW, IF YOU 5125 03:53:39,000 --> 03:53:40,760 GIVE CELLS IN THE BRAIN, ASK 5126 03:53:40,760 --> 03:53:42,920 THEM TO MAKE TOO MUCH OF A GOOD 5127 03:53:42,920 --> 03:53:47,360 THING, IT'S A BAD THING AND WE 5128 03:53:47,360 --> 03:53:49,360 KNOW THAT FROM TILE INOLE OR 5129 03:53:49,360 --> 03:53:50,800 ADVIL BUT IF YOU TAKE TOO MUCH 5130 03:53:50,800 --> 03:53:52,800 IT'S A MAJOR PROBLEM. 5131 03:53:52,800 --> 03:53:55,400 WE FOUND THAT OUT AT THE GENETIC 5132 03:53:55,400 --> 03:53:57,000 LEVEL AND THAT IS WHERE THE 5133 03:53:57,000 --> 03:54:04,480 PROGRAM COULD HAVE DIED. 5134 03:54:04,480 --> 03:54:08,080 THAT'S WHERE IT COULD HAVE 5135 03:54:08,080 --> 03:54:11,920 STOPPED AND THEY RAISED A LOT OF 5136 03:54:11,920 --> 03:54:15,560 MONEY AND WAS ABLE TO PROVIDE 5137 03:54:15,560 --> 03:54:16,600 FUNDING NECESSARY TO CONTINUE 5138 03:54:16,600 --> 03:54:19,800 THE PROJECT TO THE POINT WE SAW 5139 03:54:19,800 --> 03:54:22,880 THOSE TOXICOLOGY ISSUES WE HAD 5140 03:54:22,880 --> 03:54:24,640 ENCOUNTERED AND FIND AND DEVELOP 5141 03:54:24,640 --> 03:54:28,160 NEW VECTORS THAT EXPRESS OR MAKE 5142 03:54:28,160 --> 03:54:30,640 THE NORMAL PROTEINS AT LOWER 5143 03:54:30,640 --> 03:54:33,360 LEVELS BUT DON'T KILL THE CELLS 5144 03:54:33,360 --> 03:54:35,040 WHICH IS THE PRIMARY GOAL THAT 5145 03:54:35,040 --> 03:54:38,720 DEVELOPED A TREATMENT THAT DOES 5146 03:54:38,720 --> 03:54:40,200 NEED TO PROCESS KILL CELLS IN 5147 03:54:40,200 --> 03:54:41,200 THE BRAIN BECAUSE THEY DON'T 5148 03:54:41,200 --> 03:54:42,920 COME BACK WHEN THEY'RE DEAD AT 5149 03:54:42,920 --> 03:54:47,520 LEAST FOR THE MAJORITY OF THE 5150 03:54:47,520 --> 03:54:47,920 CASES. 5151 03:54:47,920 --> 03:54:51,560 WITH THAT IN MIND, WE SPEND 5152 03:54:51,560 --> 03:54:53,080 YEARS AND THAT WERE CONSULTED 5153 03:54:53,080 --> 03:54:55,720 FOR THESE FOUNDATIONS FROM 5154 03:54:55,720 --> 03:54:59,280 INDUSTRY TELLING US THAT WE 5155 03:54:59,280 --> 03:55:00,320 ABSOLUTELY NO ABILITY TO TAKE 5156 03:55:00,320 --> 03:55:06,400 THIS TO A CLINICAL TRIAL AND IT 5157 03:55:06,400 --> 03:55:09,800 MAY HAVE BEEN TRUE BUT MONEY WAS 5158 03:55:09,800 --> 03:55:11,760 NOT AVAILABLE AND WE'RE NOT 5159 03:55:11,760 --> 03:55:18,120 INTERESTED IN GREEN THERAPY IT'S 5160 03:55:18,120 --> 03:55:19,760 THIS MAYBE IT WORKS BUT WE NEED 5161 03:55:19,760 --> 03:55:21,640 LARGER INDICATIONS BECAUSE IT 5162 03:55:21,640 --> 03:55:29,360 FALLS INTO DISEASE AND IT'S HARD 5163 03:55:29,360 --> 03:55:32,000 TO MAKE A CASE FOR ULTRARARE 5164 03:55:32,000 --> 03:55:33,640 DISEASES AND WE'RE STUCK IN THAT 5165 03:55:33,640 --> 03:55:36,840 CYCLE OF YOU CAME TO IT BUTNTTEN 5166 03:55:36,840 --> 03:55:40,120 DOING IT SO, A FOUNDATION CAME 5167 03:55:40,120 --> 03:55:43,920 ON BOARD, THE BLUE JEANS 5168 03:55:43,920 --> 03:55:46,200 FOUNDATION THAT ALLOWED US TO 5169 03:55:46,200 --> 03:55:48,120 TAKE THE FINAL STEPS TO GET TO 5170 03:55:48,120 --> 03:55:52,000 CLINICAL TRIAL AND WE WERE ABLE 5171 03:55:52,000 --> 03:55:53,760 TO GENERATE CLINICAL TRADE 5172 03:55:53,760 --> 03:55:56,040 MATERIAL WHICH ARE EXPENSIVE AND 5173 03:55:56,040 --> 03:56:03,160 WITH ADVENTURES THEY'RE SINGLE 5174 03:56:03,160 --> 03:56:06,000 COULD LAST FOR A LONG TIME AND 5175 03:56:06,000 --> 03:56:10,240 WE SEE WHAT HAPPENS IN MODELS 5176 03:56:10,240 --> 03:56:12,400 AND WE DID ALL THE STUDIES FOR 5177 03:56:12,400 --> 03:56:15,240 THE FDA TO APPROVE THE PILE AND 5178 03:56:15,240 --> 03:56:21,320 WE HAVE TWO PATIENTS AND WE SAW 5179 03:56:21,320 --> 03:56:23,720 BENEFITS AND WE STARTED WITH 5180 03:56:23,720 --> 03:56:24,920 VERY LOW AND SINGLE TO THE 5181 03:56:24,920 --> 03:56:26,480 TREATMENT THAT CAN'T BE TAKEN 5182 03:56:26,480 --> 03:56:32,000 AWAY WHEN YOU PUT IN IT STAYS IN 5183 03:56:32,000 --> 03:56:38,000 THE CELLS AND EVENTUALLY THE 5184 03:56:38,000 --> 03:56:39,200 TECHNOLOGIES WERE LICENSED AND 5185 03:56:39,200 --> 03:56:42,720 ALL OUR DATA THAT HAD SUPPORTED 5186 03:56:42,720 --> 03:56:44,480 THAT INITIAL CLINICAL TRIAL WAS 5187 03:56:44,480 --> 03:56:46,240 A PHASE TO STUDY THAT IS STILL 5188 03:56:46,240 --> 03:56:50,680 ON GOING TODAY SO ONE OF THE 5189 03:56:50,680 --> 03:56:51,840 THINGS WE'VE DONE IS 5190 03:56:51,840 --> 03:56:53,720 PARTICIPATED IN THE ANNUAL 5191 03:56:53,720 --> 03:56:54,680 MEETING OF THE FONDATION IT'S 5192 03:56:54,680 --> 03:56:57,320 CALLED THE FAMILY MEETING TO 5193 03:56:57,320 --> 03:56:59,120 ACTUALLY MEET THE PATIENTS AND 5194 03:56:59,120 --> 03:57:00,720 NOT ONLY MEET THE PATIENTS 5195 03:57:00,720 --> 03:57:02,760 ACTUALLY EDUCATE THEM AS WELL IN 5196 03:57:02,760 --> 03:57:06,440 WHAT WE'RE TRYING TO DO WITH THE 5197 03:57:06,440 --> 03:57:06,920 TECHNOLOGY. 5198 03:57:06,920 --> 03:57:10,120 OVER THE YEARS, YOU WOULD START 5199 03:57:10,120 --> 03:57:11,520 TO GET QUESTIONS THAT WERE 5200 03:57:11,520 --> 03:57:12,600 EXTREMELY SPECIFIC TO THE 5201 03:57:12,600 --> 03:57:15,400 TECHNOLOGY SO THERE'S VERY, VERY 5202 03:57:15,400 --> 03:57:16,960 CLEAR THAT INDIVIDUALS THAT 5203 03:57:16,960 --> 03:57:19,080 PARTICIPATED IN THOSE MEETINGS 5204 03:57:19,080 --> 03:57:21,680 ON A YEARLY BASIS STARTED TO 5205 03:57:21,680 --> 03:57:23,240 REALLY UNDERSTAND THE BASICS OF 5206 03:57:23,240 --> 03:57:25,200 THE TECHNOLOGY AND THAT IS ALSO 5207 03:57:25,200 --> 03:57:26,240 IMPORTANT FROM THE POINT OF VIEW 5208 03:57:26,240 --> 03:57:27,920 OF THE PATIENT COMMUNITY TO 5209 03:57:27,920 --> 03:57:29,760 REALLY HAVE A GOOD SENSE OF WHAT 5210 03:57:29,760 --> 03:57:31,520 IS IT THAT IS BEING DONE? 5211 03:57:31,520 --> 03:57:33,640 ON THE SURFACE IF YOU LOOK AT T 5212 03:57:33,640 --> 03:57:35,840 THE IDEA OF PUTTING GENES BACK 5213 03:57:35,840 --> 03:57:39,160 INTO YOUR BODY CAN BE SCARY. 5214 03:57:39,160 --> 03:57:39,880 NOW A LAYS A LITTLE BIT LESS BUT 5215 03:57:39,880 --> 03:57:41,840 NONE THE LESS, IT'S STILL A 5216 03:57:41,840 --> 03:57:48,520 LITTLE BIT OF A DAUNTING IDEA. 5217 03:57:48,520 --> 03:57:49,840 IT'S NECESSARY THE COMMUNITY 5218 03:57:49,840 --> 03:57:52,960 GETS EDUCATED, LEARNS THROUGH 5219 03:57:52,960 --> 03:57:54,920 THE RESEARCH SOURCE THAT THERE'S 5220 03:57:54,920 --> 03:57:58,680 A DEGREE OF TRUST THAT IS PRETTY 5221 03:57:58,680 --> 03:58:00,320 IMPORTANT TO DEVELOP OVER TIME 5222 03:58:00,320 --> 03:58:02,040 AND WE CONTINUE TO GO TO THE 5223 03:58:02,040 --> 03:58:03,680 FAMILY MEETINGS AND ARE 5224 03:58:03,680 --> 03:58:05,120 COMPLETELY TRANSPARENT WITH THE 5225 03:58:05,120 --> 03:58:06,440 FAMILIES AND THE FOUNDATIONS 5226 03:58:06,440 --> 03:58:08,320 WHERE WE ARE TODAY AND WHAT ARE 5227 03:58:08,320 --> 03:58:10,200 THE PROBLEMS THAT WE HAVE AND 5228 03:58:10,200 --> 03:58:11,520 FORTUNATELY NOT MANY NOWADAYS 5229 03:58:11,520 --> 03:58:13,080 AND WE CONTINUE TO WORK VERY, 5230 03:58:13,080 --> 03:58:15,440 VERY CLOSELY WITH THIS 5231 03:58:15,440 --> 03:58:18,280 FOUNDATION SO BASED ON THIS 5232 03:58:18,280 --> 03:58:19,800 EXPERIENCES, IT'S A SECOND 5233 03:58:19,800 --> 03:58:21,360 PROGRAM FOR ANOTHER STORAGE 5234 03:58:21,360 --> 03:58:23,600 DISEASE THAT ACTUALLY WE 5235 03:58:23,600 --> 03:58:25,760 COLLABORATE WITH A COLLEAGUES 5236 03:58:25,760 --> 03:58:27,040 THAT WORKS IN THE BUILDING 10, 5237 03:58:27,040 --> 03:58:34,160 THE CLINICAL RESEARCH CENTER AT 5238 03:58:34,160 --> 03:58:44,680 NIH SO THIS IS A NICE STARTED 5239 03:58:50,840 --> 03:58:52,560 WITH AND SO BASED ON THIS 5240 03:58:52,560 --> 03:58:55,200 EXPERIENCE, WE TOOK THAT PROGRAM 5241 03:58:55,200 --> 03:58:57,320 AND DEVELOPED IT ALL ON OUR OWN 5242 03:58:57,320 --> 03:59:02,120 SO WE WORD THAT YES ACADEMICS 5243 03:59:02,120 --> 03:59:03,880 CAN AND DEVELOP AND LEAD 5244 03:59:03,880 --> 03:59:05,480 PROGRAMS TOWARDS CLINICAL TRIALS 5245 03:59:05,480 --> 03:59:06,760 AND IT REQUIRES A LOT OF 5246 03:59:06,760 --> 03:59:10,480 PERSONAL AND THERE'S NO QUESTION 5247 03:59:10,480 --> 03:59:14,240 ABOUT THAT AND YOU HAVE IF HE 5248 03:59:14,240 --> 03:59:15,920 TAKE YOUR OWN HANDS AND 5249 03:59:15,920 --> 03:59:18,880 DO-IT-YOURSELF AND YOUWORK WITH 5250 03:59:18,880 --> 03:59:20,560 THE THINGS ARE DONE PROPERLY AND 5251 03:59:20,560 --> 03:59:22,160 OF COURSE THEY HAVE TO FIT THE 5252 03:59:22,160 --> 03:59:23,800 CRITERIA AND THE REQUIREMENTS 5253 03:59:23,800 --> 03:59:26,200 THAT THE FDA HAS BASED ON THIS 5254 03:59:26,200 --> 03:59:27,680 EXPERIENCE TO START THE 5255 03:59:27,680 --> 03:59:30,200 TRANSLATIONAL INSTITUTE FOR 5256 03:59:30,200 --> 03:59:36,240 THERAPEUTICS UMAS SCHOOL TO 5257 03:59:36,240 --> 03:59:41,720 TRANSLATE THAT EXPERIENCE TO 5258 03:59:41,720 --> 03:59:43,240 TRANSLATE FROM THE BENCH TO THE 5259 03:59:43,240 --> 03:59:45,800 CLINIC IN ANNIE MISH MANNER AND 5260 03:59:45,800 --> 03:59:50,320 WHAT WE UNDER UP WORKING ON ARE 5261 03:59:50,320 --> 03:59:51,760 RARE DISEASES AND WE'RE 5262 03:59:51,760 --> 03:59:54,520 CONTACTING BY PATIENTS AND THE 5263 03:59:54,520 --> 03:59:57,040 PARENTS AND WE STARTED TO FORM 5264 03:59:57,040 --> 03:59:58,000 PARTNERSHIPS WITH THE FAMILIES 5265 03:59:58,000 --> 03:59:59,600 AND WE ALWAYS ADVISE THEM TO 5266 03:59:59,600 --> 04:00:04,840 FORM A FOUNDATION AND THERE CAN 5267 04:00:04,840 --> 04:00:09,560 BE A FORMAL THEY STRUGGLED TO 5268 04:00:09,560 --> 04:00:10,480 RAISE MONEY BECAUSE WE'RE 5269 04:00:10,480 --> 04:00:13,600 TALKING ABOUT AGAIN LIKE DISEASE 5270 04:00:13,600 --> 04:00:15,880 WHERE THERE MAY BE 10 PATIENTS 5271 04:00:15,880 --> 04:00:18,080 KNOWN WORLD WILD AND WE CAN MAN 5272 04:00:18,080 --> 04:00:23,560 MAKING A COMMERCIAL CASE IS A 5273 04:00:23,560 --> 04:00:25,480 BIT DAUNTING AND I DON'T MAKE 5274 04:00:25,480 --> 04:00:26,760 THAT COMMERCIAL CASE SO WE'RE 5275 04:00:26,760 --> 04:00:28,440 WORKING VERY CLOSELY WITH THE 5276 04:00:28,440 --> 04:00:29,920 FOUNDATION THAT WAS STARTED BY A 5277 04:00:29,920 --> 04:00:31,840 FAMILY AND THIS IS ACTUALLY 5278 04:00:31,840 --> 04:00:33,560 EXAMPLES OF THAT WE HAVE NOW ON 5279 04:00:33,560 --> 04:00:35,960 GOING AND TO RAIL' TAKE IT TO 5280 04:00:35,960 --> 04:00:38,560 THE SMALL CLINICAL TRIALS AND 5281 04:00:38,560 --> 04:00:40,840 HOPEFULLY SHOW EFFICACY AND 5282 04:00:40,840 --> 04:00:44,920 MAYBE THERE'S SOME THAT WANTS TO 5283 04:00:44,920 --> 04:00:47,640 TAKE IT OVER AND O NEVER IT OVER 5284 04:00:47,640 --> 04:00:51,720 AND THESE THERAPIES HAVE MADE IT 5285 04:00:51,720 --> 04:00:53,160 AVAILABLE AND THAT SUFFER FROM 5286 04:00:53,160 --> 04:00:55,160 RARE CONDITIONS THAT MAY IN FACT 5287 04:00:55,160 --> 04:00:58,000 HAVE THE CATEGORY OF THE RARE 5288 04:00:58,000 --> 04:01:00,280 DISEASES AND ULTRARARE DOESN'T A 5289 04:01:00,280 --> 04:01:03,400 PLOY TO THIS ONE SO OUR 5290 04:01:03,400 --> 04:01:04,720 EXPERIENCE HAVE BEEN BROAD AND I 5291 04:01:04,720 --> 04:01:07,640 WORK WITH FOUNDATIONS THAT HAVE 5292 04:01:07,640 --> 04:01:11,840 SUFFICIENT FUNDS THAT REALLY CAN 5293 04:01:11,840 --> 04:01:14,080 THROW MANY ERRORS AT LODGE OF 5294 04:01:14,080 --> 04:01:14,920 TECHNOLOGY. 5295 04:01:14,920 --> 04:01:18,160 ONE IS THE FAMILY FOUNDATION 5296 04:01:18,160 --> 04:01:20,760 THAT FUNDS N F-1 AND THEY HAVE 5297 04:01:20,760 --> 04:01:23,320 ENOUGH RESOURCES THAT THEY CAN 5298 04:01:23,320 --> 04:01:25,440 ACTUALLY FUND A BROAD ARRAY OF 5299 04:01:25,440 --> 04:01:26,920 MOLECULAR TECHNIQUES TO FIND 5300 04:01:26,920 --> 04:01:31,040 THERAPY FOR NEURO FIBRO MITO SIS 5301 04:01:31,040 --> 04:01:32,760 SO WE WORKED FROM FOUNDATIONS 5302 04:01:32,760 --> 04:01:34,360 WHERE OF COURSE YOU KNOW, YOU 5303 04:01:34,360 --> 04:01:37,800 HAVE TO BE VERY, VERY CAREFUL 5304 04:01:37,800 --> 04:01:39,200 WITH THE EXPERIMENTS ASK MAKE 5305 04:01:39,200 --> 04:01:40,560 SURE NOT THAT YOU ARE NOT DOING 5306 04:01:40,560 --> 04:01:42,280 MORE THAN ARE NECESSARILY NEEDED 5307 04:01:42,280 --> 04:01:44,200 TO GO TOWARDS THE CLINICAL TRIAL 5308 04:01:44,200 --> 04:01:45,360 AND ALWAYS OF COURSE MAINTAINING 5309 04:01:45,360 --> 04:01:47,760 IN MIND THE SAFETY AND AT LEAST 5310 04:01:47,760 --> 04:01:49,280 HAVE A GOOD CHANCE OF HAVING 5311 04:01:49,280 --> 04:01:51,080 SOME EFFICACY AND WHATEVER IT IS 5312 04:01:51,080 --> 04:01:52,640 THAT BEER DOING SO IT'S A BROAD 5313 04:01:52,640 --> 04:01:54,280 EXPERIENCE AND I THINK 5314 04:01:54,280 --> 04:01:57,000 DEVELOPING VERY CLOSE 5315 04:01:57,000 --> 04:01:57,720 COLLABORATION AND CONTACT WITH 5316 04:01:57,720 --> 04:01:59,480 THE FOUNDATIONS AND TO BE 5317 04:01:59,480 --> 04:02:00,520 COMPLETELY TRANSPARENT ABOUT THE 5318 04:02:00,520 --> 04:02:01,800 GOOD AND THE BAD AND THE 5319 04:02:01,800 --> 04:02:03,000 TERRIBLE AND IT'S REALLY 5320 04:02:03,000 --> 04:02:04,240 IMPORTANT FOR THE FOUNDATIONS OF 5321 04:02:04,240 --> 04:02:06,080 THE PATIENTS SO THAT THEY REALLY 5322 04:02:06,080 --> 04:02:07,560 UNDER THE SCIENTIFIC PROGRESS 5323 04:02:07,560 --> 04:02:09,760 AND AT THE END OF THE DAY THEY 5324 04:02:09,760 --> 04:02:11,800 TRUST WHAT YOU ARE DOING CAN 5325 04:02:11,800 --> 04:02:14,480 MAKE A DIFFERENCE AND MOVE THE 5326 04:02:14,480 --> 04:02:16,000 FIELD FORWARD FOR PARTICULAR 5327 04:02:16,000 --> 04:02:17,560 DISEASES FOR WHICH NOWADAYS WE 5328 04:02:17,560 --> 04:02:19,200 DON'T HAVE THERAPIES AND SO I 5329 04:02:19,200 --> 04:02:20,920 DID NOT KNOW HOW TO PUT THIS ALL 5330 04:02:20,920 --> 04:02:23,080 IN SLIDES SO I JUST GAVE YOU A 5331 04:02:23,080 --> 04:02:24,760 FAIRLY LONG MONOLOGUE ON THIS 5332 04:02:24,760 --> 04:02:26,280 AND I'M HAPPY TO ANSWER 5333 04:02:26,280 --> 04:02:27,160 QUESTIONS LATER ON. 5334 04:02:27,160 --> 04:02:29,520 THANK YOU FOR YOUR ATTENTION. 5335 04:02:29,520 --> 04:02:31,800 >> THANK YOU. 5336 04:02:31,800 --> 04:02:33,920 COULD ALL OF THE SPEAKERS PLEASE 5337 04:02:33,920 --> 04:02:36,280 JOIN ME ON VIDEO. 5338 04:02:36,280 --> 04:02:38,960 WE HAVE ABOUT 10 MINUTES LEFT 5339 04:02:38,960 --> 04:02:41,280 AND I HOPE, I SEE ONE QUESTION 5340 04:02:41,280 --> 04:02:43,600 AND I'LL GET US STARTED AND 5341 04:02:43,600 --> 04:02:45,400 ENCOURAGE OTHER QUESTIONS TO 5342 04:02:45,400 --> 04:02:46,800 COME IN. 5343 04:02:46,800 --> 04:02:52,440 I THINK THAT JIG SA METAPHOR 5344 04:02:52,440 --> 04:02:59,480 RESINATES WITH MANY OF YOU AND 5345 04:02:59,480 --> 04:03:01,160 WHERE A NON-PROFIT CAN HELP 5346 04:03:01,160 --> 04:03:04,320 UNDERSTANDING THE LANDSCAPE AND 5347 04:03:04,320 --> 04:03:05,160 HELPING ALL THE DIFFERENT TYPES 5348 04:03:05,160 --> 04:03:07,520 OF STAKEHOLDERS FIT TOGETHER. 5349 04:03:07,520 --> 04:03:09,120 DURING THE OTHER WAYS, ONE THING 5350 04:03:09,120 --> 04:03:10,720 THAT I DIDN'T HEAR AS MUCH ABOUT 5351 04:03:10,720 --> 04:03:14,280 WAS CONVENING, AND I THINK YOU 5352 04:03:14,280 --> 04:03:15,960 MENTIONED THE FAMILY FOUNDATIONS 5353 04:03:15,960 --> 04:03:18,320 ANNUAL MEETING, FOR EXAMPLE, AND 5354 04:03:18,320 --> 04:03:20,320 HAVE YOU GUYS SEEN EXAMPLES 5355 04:03:20,320 --> 04:03:22,000 WHERE YOU FEEL THAT THE NON 5356 04:03:22,000 --> 04:03:24,360 PROFITS WORK IN CREATING 5357 04:03:24,360 --> 04:03:25,800 SETTINGS TO CONVENE DIFFERENT 5358 04:03:25,800 --> 04:03:28,280 TYPES OF STAKEHOLDERS WITHIN 5359 04:03:28,280 --> 04:03:31,160 ACADEMIA OR ACROSS ACADEMIA HAS 5360 04:03:31,160 --> 04:03:34,560 BEEN PIVOTAL TO THE ADVANCES IN 5361 04:03:34,560 --> 04:03:36,160 YOUR FIELD AND I'LL LEAVE IT TO 5362 04:03:36,160 --> 04:03:38,880 YOU WHICH OF YOU TO RESPOND? 5363 04:03:38,880 --> 04:03:39,760 >> CERTAINLY. 5364 04:03:39,760 --> 04:03:42,520 IT'S GOOD TO INVITE ACADEMIC 5365 04:03:42,520 --> 04:03:44,040 INVESTIGATORS OF COURSE BUT 5366 04:03:44,040 --> 04:03:45,120 COMPANIES THAT MIGHT SHALL 5367 04:03:45,120 --> 04:03:46,800 INTERESTED TO COME TO YOUR 5368 04:03:46,800 --> 04:03:47,600 ANNUAL MEETINGS. 5369 04:03:47,600 --> 04:03:49,520 IT'S BEEN REALLY KAI I THINK 5370 04:03:49,520 --> 04:03:53,440 WITH SOME OF THE DISEASES WE 5371 04:03:53,440 --> 04:03:54,640 WORK ON TO CONVINCE THE 5372 04:03:54,640 --> 04:03:56,760 COMPANIES THAT THERE ARE PEOPLE 5373 04:03:56,760 --> 04:03:58,760 WHO REALLY WANT TO HAVE A 5374 04:03:58,760 --> 04:04:00,200 TREATMENT AND ARE WILLING TO DO 5375 04:04:00,200 --> 04:04:03,840 WHAT THEY CAN TO HELP I THINK IN 5376 04:04:03,840 --> 04:04:06,840 PARTICULAR TO SEE WHAT THE 5377 04:04:06,840 --> 04:04:08,960 DISEASES ARE LIKE. 5378 04:04:08,960 --> 04:04:19,480 I ENCOURAGE THAT FROM PATIENTS 5379 04:04:51,120 --> 04:04:55,360 TO INDUSTRY ARE VERY USEFUL. 5380 04:04:55,360 --> 04:04:58,880 >> I JUST WANT TO CALL OUT TO 5381 04:04:58,880 --> 04:05:01,160 ME, IT RESINATED SO MUCH TO SEE 5382 04:05:01,160 --> 04:05:02,800 DIFFERENT STAKEHOLDERS PUT ON TO 5383 04:05:02,800 --> 04:05:07,040 EACH OF YOUR DIFFERENT JIG SA 5384 04:05:07,040 --> 04:05:08,960 PUZZLE AND I WORK AT THREE 5385 04:05:08,960 --> 04:05:10,360 DIFFERENT FOUNDATIONS OR 5386 04:05:10,360 --> 04:05:11,600 ASSOCIATIONS AND IT'S SUCH AN 5387 04:05:11,600 --> 04:05:12,960 EXAMPLE OF ABOUT HOWDY PENDING 5388 04:05:12,960 --> 04:05:15,280 ON THE FIELD OF SCIENCE AND THE 5389 04:05:15,280 --> 04:05:16,280 MISSION OF THE ORGANIZATION AND 5390 04:05:16,280 --> 04:05:20,320 THE STAKEHOLDERS YOU NEED TO 5391 04:05:20,320 --> 04:05:28,680 WORK WITH AND UNDERSTANDING 5392 04:05:28,680 --> 04:05:29,880 WHERE THE STAKEHOLDERS ARE 5393 04:05:29,880 --> 04:05:31,360 COMING FROM AND BEING EVOLVING 5394 04:05:31,360 --> 04:05:38,120 OVER TIME. 5395 04:05:38,120 --> 04:05:39,640 WONDERFUL QUESTION IN THE 5396 04:05:39,640 --> 04:05:40,000 CHATBOX. 5397 04:05:40,000 --> 04:05:42,520 THE FOUNDATION ARE ALTRUISTIC 5398 04:05:42,520 --> 04:05:43,560 WANTING TRIALS TO BE SUCCESSFUL, 5399 04:05:43,560 --> 04:05:45,480 WHAT IS A FAIR ASK OF FUNDERS OR 5400 04:05:45,480 --> 04:05:47,600 NIH OR PHARMA AND INDUSTRY TO 5401 04:05:47,600 --> 04:05:49,080 HELP WITH FOUNDATIONS WHO ARE 5402 04:05:49,080 --> 04:05:51,680 TRYING TO SUPPORT RECRUITMENT IN 5403 04:05:51,680 --> 04:05:52,400 RESEARCH, FOR EXAMPLE. 5404 04:05:52,400 --> 04:05:54,480 IS IT REASONABLE FOR FOUNDATIONS 5405 04:05:54,480 --> 04:05:55,720 TO MONETIZE THE ACCESS TO 5406 04:05:55,720 --> 04:05:56,760 PATIENTS THAT THEY HAVE 5407 04:05:56,760 --> 04:06:02,560 CULTIVATED AND I THINK THIS IS A 5408 04:06:02,560 --> 04:06:03,960 IMPORTANT QUESTIONS THAT NEEDS 5409 04:06:03,960 --> 04:06:05,160 STAKEHOLDERS ANSWERING IT 5410 04:06:05,160 --> 04:06:07,040 BECAUSE THERE'S ANSWERS IN 5411 04:06:07,040 --> 04:06:08,360 BIOETHICS THAT WE DON'T HAVE IN 5412 04:06:08,360 --> 04:06:10,720 THE PANEL RIGHT NOW BUT I WOULD 5413 04:06:10,720 --> 04:06:14,800 LOVE TO HEAR THOSE OF YOU FROM 5414 04:06:14,800 --> 04:06:17,320 THE ACADEMIC RESEARCH WORLD AND 5415 04:06:17,320 --> 04:06:18,880 THE INTRAMURAL RESEARCH WORLD'S. 5416 04:06:18,880 --> 04:06:20,360 WHAT DO YOU THINK? 5417 04:06:20,360 --> 04:06:23,720 >> WELL, I WAS STARTING TO 5418 04:06:23,720 --> 04:06:24,720 RESPONDED IN THE CHAT. 5419 04:06:24,720 --> 04:06:28,280 I WOULDN'T PUT ANY BARRIERS TO 5420 04:06:28,280 --> 04:06:28,720 RECRUITMENT. 5421 04:06:28,720 --> 04:06:30,000 I THINK IT'S GOOD FOR THE 5422 04:06:30,000 --> 04:06:31,440 FOUNDATIONS AND MAYBE I'M NOT 5423 04:06:31,440 --> 04:06:34,560 READING THIS CORRECTLY. 5424 04:06:34,560 --> 04:06:36,320 IT HELPS FOR THE FOUNDATIONS TO 5425 04:06:36,320 --> 04:06:37,920 CONVINCE THE ACADEMIC 5426 04:06:37,920 --> 04:06:40,240 INVESTIGATORS FIRST AND THE 5427 04:06:40,240 --> 04:06:42,400 COMPANIES THAT THEY'RE GUNG HO 5428 04:06:42,400 --> 04:06:43,720 GETTING AN EFFECTIVE TREATMENT 5429 04:06:43,720 --> 04:06:45,640 AND WILLING TO DO WHAT THEY CAN 5430 04:06:45,640 --> 04:06:52,440 WITHOUT CHARGING FOR IT AND 5431 04:06:52,440 --> 04:06:53,840 MAYBE I'M READING THIS 5432 04:06:53,840 --> 04:06:54,080 BACKWARDS? 5433 04:06:54,080 --> 04:06:56,280 >> FOUNDATION NOWADAYS AND 5434 04:06:56,280 --> 04:06:58,880 THERE'S A BIG TREND IN THIS IS 5435 04:06:58,880 --> 04:07:01,320 THAT IT USED TO BE THAT 5436 04:07:01,320 --> 04:07:02,640 FOUNDATIONS ARE PROVIDING 5437 04:07:02,640 --> 04:07:04,640 FUNDING AND THAT'S ABOUT IT AND 5438 04:07:04,640 --> 04:07:06,160 NOWADAYS MOST FOUNDATIONS WANT 5439 04:07:06,160 --> 04:07:07,960 PART OF THE IP THAT IS 5440 04:07:07,960 --> 04:07:08,400 GENERATED. 5441 04:07:08,400 --> 04:07:11,040 I THINK IT'S COMPLETELY FAIR. 5442 04:07:11,040 --> 04:07:13,280 NOW, THE NOTION OF MONETIZING 5443 04:07:13,280 --> 04:07:15,280 ACCESS TO PATIENTS, WHILE YOU 5444 04:07:15,280 --> 04:07:18,800 PUT A BARRIER THERE AND YOUR 5445 04:07:18,800 --> 04:07:21,640 REPRESENTING THE PATIENTS AND IN 5446 04:07:21,640 --> 04:07:25,440 MY OPINION, THE REAL OF THE 5447 04:07:25,440 --> 04:07:28,280 FOUNDATION AND TO FACILITATE AS 5448 04:07:28,280 --> 04:07:30,600 MUCH AS POSSIBLE AND RECRUITING 5449 04:07:30,600 --> 04:07:32,600 PATIENTS THAT'S THE GOAL AND THE 5450 04:07:32,600 --> 04:07:38,400 PROCESS THEY CAN HAVE THE 5451 04:07:38,400 --> 04:07:39,960 INDUSTRY SUPPORT NATURAL HISTORY 5452 04:07:39,960 --> 04:07:42,080 STUDIES AND IT'S FABULOUS AND I 5453 04:07:42,080 --> 04:07:45,320 PERSONALLY DON'T THINK THAT 5454 04:07:45,320 --> 04:07:46,600 CHARGING COMPANIES TO GET ACCESS 5455 04:07:46,600 --> 04:07:49,120 TO A LIST OF PATIENTS IS 5456 04:07:49,120 --> 04:07:50,680 SOMETHING THAT IT WILL WORK 5457 04:07:50,680 --> 04:07:52,120 BECAUSE COMPANIES WILL BE ABLE 5458 04:07:52,120 --> 04:07:57,040 TO GET AROUND THAT SO IT FALLS 5459 04:07:57,040 --> 04:07:58,280 OUT OF THE MISSION OF A 5460 04:07:58,280 --> 04:08:00,680 FOUNDATION TO DO SO AND IT'S A 5461 04:08:00,680 --> 04:08:03,880 WAY TO RAISE MUND FOR THE 5462 04:08:03,880 --> 04:08:04,680 FOUNDATION BUT THERE'S OTHER 5463 04:08:04,680 --> 04:08:15,200 WAYS IT CAN BE DONE SO RESHAPING 5464 04:08:16,360 --> 04:08:16,840 HAVE A DIM VIEW OF THAT. 5465 04:08:16,840 --> 04:08:22,720 >> I'M HAPPY TO MAKE A COMMENT 5466 04:08:22,720 --> 04:08:22,920 ALSO. 5467 04:08:22,920 --> 04:08:24,240 I KNOW PAUL WELL AND I'VE HAD 5468 04:08:24,240 --> 04:08:25,040 CONVERSATIONS WITH THIS IN THE 5469 04:08:25,040 --> 04:08:26,960 PAST AND ONE OF THE GROUPS WITH 5470 04:08:26,960 --> 04:08:31,880 PAUL, ONE OF THE GROUPS THAT WE 5471 04:08:31,880 --> 04:08:33,040 COLLECT DATA AND IT'S GOING ON 5472 04:08:33,040 --> 04:08:43,520 IN A PERSON WAY FOR YEARS AND 5473 04:08:44,680 --> 04:08:45,640 FIREFIGHTERS CONSISTENT WITH 5474 04:08:45,640 --> 04:08:46,760 BEING ABLE TO DO THAT AND IN 5475 04:08:46,760 --> 04:08:50,840 OTHER WORDS DO WE HAVE TO 5476 04:08:50,840 --> 04:08:52,760 RECONSENT OR THINK ABOUT IT IN A 5477 04:08:52,760 --> 04:08:54,600 DIFFERENT ETHICAL WAY AND IT'S 5478 04:08:54,600 --> 04:09:01,680 AN 'EM PEDESTRIANMENT WITH A 5479 04:09:01,680 --> 04:09:06,600 NETWORK OR THAT YOU ALL WORK 5480 04:09:06,600 --> 04:09:06,800 WITH. 5481 04:09:06,800 --> 04:09:08,400 >> WE'VE ANOTHER QUESTION COME 5482 04:09:08,400 --> 04:09:10,960 IN FROM KAITLYN AND I'M GOING TO 5483 04:09:10,960 --> 04:09:12,920 PARAPHRASE 2 AND I HOPE I DO IT 5484 04:09:12,920 --> 04:09:20,200 JUSTICE, KAITLYN, ARE ROLES 5485 04:09:20,200 --> 04:09:22,080 AROUND THE NON-PROFIT AND THE 5486 04:09:22,080 --> 04:09:25,600 ACADEMIC RESEARCHERS AND 5487 04:09:25,600 --> 04:09:27,360 SOMETIMES THE NON-PROFIT HAS 5488 04:09:27,360 --> 04:09:28,400 CONTRIBUTION OF SCIENTIFIC 5489 04:09:28,400 --> 04:09:31,240 SUPPORT LIKE STUDY DESIGN, 5490 04:09:31,240 --> 04:09:33,040 ANALYSIS AND DISSEMINATION AND 5491 04:09:33,040 --> 04:09:35,880 I'VE SEEN OTHER NON PROFITS 5492 04:09:35,880 --> 04:09:46,440 CURATE DATABASE IS OR INVEST IN 5493 04:09:52,160 --> 04:09:53,360 DO YOU HAVE A DEEPER 5494 04:09:53,360 --> 04:09:54,800 RELATIONSHIP WITH SCIENTISTS AT 5495 04:09:54,800 --> 04:10:00,120 DIFFERENT NON PROFITS? 5496 04:10:00,120 --> 04:10:02,120 TO BE HONEST, THERE ARE SO MANY 5497 04:10:02,120 --> 04:10:03,400 EXAMPLES THAT I'M HAVING A HARD 5498 04:10:03,400 --> 04:10:05,160 TIME COMING UP WITH JUST A FEW 5499 04:10:05,160 --> 04:10:07,240 BUT JUST TO START, WITH THE 5500 04:10:07,240 --> 04:10:11,440 MAJOR SOME OF THE MAJOR 5501 04:10:11,440 --> 04:10:13,080 ORGANIZATIONS AND THERE'S MANY 5502 04:10:13,080 --> 04:10:14,480 ALS GROUPS AND NON PROFITS THAT 5503 04:10:14,480 --> 04:10:19,520 HAVE ENGAGE WITH RESEARCHERS AND 5504 04:10:19,520 --> 04:10:25,440 ACADEMIC CENTERS AND AND THE ALS 5505 04:10:25,440 --> 04:10:28,720 ASSOCIATION HAS BEEN FUNDING 5506 04:10:28,720 --> 04:10:30,120 MANY COMPLEX RESEARCH STUDIES 5507 04:10:30,120 --> 04:10:32,720 AND I MENTIONED A FEW WHEN I 5508 04:10:32,720 --> 04:10:33,960 PRESENTED THIS AND THERE ARE SO 5509 04:10:33,960 --> 04:10:37,200 MANY MORE AND YOU MAY RECALL AND 5510 04:10:37,200 --> 04:10:39,360 THE CHALLENGE AND THAT WAS GREAT 5511 04:10:39,360 --> 04:10:40,840 OPPORTUNITY FOR THE ALS 5512 04:10:40,840 --> 04:10:44,240 ASSOCIATION TO HAVE MORE FUNDS 5513 04:10:44,240 --> 04:10:46,600 AND IT'S PHENOMENAL HOW THEY 5514 04:10:46,600 --> 04:10:49,480 DISTRIBUTED THAT TO ALLOW 5515 04:10:49,480 --> 04:10:50,920 IMPORTANT RESEARCH TO HAPPEN AND 5516 04:10:50,920 --> 04:10:52,360 AGAIN, JUST ONE OF THE MANY 5517 04:10:52,360 --> 04:10:55,480 EXAMPLES THAT COULD MAKE BASED 5518 04:10:55,480 --> 04:10:58,880 ON ALS ASSOCIATION FUNDING AND 5519 04:10:58,880 --> 04:11:00,640 MANY NEW JEANS FOR ALS HAS BEEN 5520 04:11:00,640 --> 04:11:03,080 DISCOVERED BECAUSE OF THE 5521 04:11:03,080 --> 04:11:05,240 FUNDING THAT THEY DISTRIBUTE SOD 5522 04:11:05,240 --> 04:11:07,000 CLEARLY ASSOCIATIONS LIKE THIS 5523 04:11:07,000 --> 04:11:08,640 ONE LIKE THE ASSOCIATION HELPED 5524 04:11:08,640 --> 04:11:10,400 NOT JUST FOR RECRUITMENT OR 5525 04:11:10,400 --> 04:11:11,720 COLLABORATION WITH THE PATIENT 5526 04:11:11,720 --> 04:11:15,000 COMMUNITY BUT TO ACTUALLY FUND 5527 04:11:15,000 --> 04:11:16,720 RESEARCH THAT HAS PROVEN TO BE 5528 04:11:16,720 --> 04:11:17,520 TRANSFORMATIVE AND IT'S ONE OF 5529 04:11:17,520 --> 04:11:19,200 THE EXAMPLES AND OTHER 5530 04:11:19,200 --> 04:11:20,000 ASSOCIATIONS LIKE FOR EXAMPLE 5531 04:11:20,000 --> 04:11:25,520 THE MDA OR MUSCULAR DYSTROPHY 5532 04:11:25,520 --> 04:11:26,720 ASSOCIATION HAVE A MOVING 5533 04:11:26,720 --> 04:11:30,280 REGISTRY THAT HELPS AMOUNT IN 5534 04:11:30,280 --> 04:11:32,560 TERMS 6 KNEW OWE MUSCULAR 5535 04:11:32,560 --> 04:11:33,560 DISEASE AND PROVIDES 5536 04:11:33,560 --> 04:11:36,240 INFRASTRUCTURE FOR RESEARCH FOR 5537 04:11:36,240 --> 04:11:37,360 NATURAL HISTORY STUD EYES AND IT 5538 04:11:37,360 --> 04:11:38,920 COULD GO ON AND ON SO ESSENTIAL 5539 04:11:38,920 --> 04:11:42,400 LOW THERE'S SEVERAL EXAMPLES AND 5540 04:11:42,400 --> 04:11:44,200 I WOULD LIKE TO EMPHASIZE THE 5541 04:11:44,200 --> 04:11:45,880 IMPORTANCE OF THIS RESEARCH 5542 04:11:45,880 --> 04:11:48,600 SOMETIMES FOUNDATIONS FUND 5543 04:11:48,600 --> 04:11:51,080 HIGH-RISK AND HIGH REWARD 5544 04:11:51,080 --> 04:11:52,920 PROJECTS THAT OTHERWISE WOULD 5545 04:11:52,920 --> 04:11:56,760 TAKE A LONG TIME TO GET FUNDED 5546 04:11:56,760 --> 04:11:58,080 THROUGH MORE TRADITIONAL SOURCES 5547 04:11:58,080 --> 04:12:01,000 SO THEY HE CAN SELL RATE THE 5548 04:12:01,000 --> 04:12:01,480 PROGRESS. 5549 04:12:01,480 --> 04:12:05,160 >> ONE MINUTE WARNING. 5550 04:12:05,160 --> 04:12:09,960 >> YOU ARE MUTED. 5551 04:12:09,960 --> 04:12:12,120 >> ONE EXPERIENCE TO JUST 5552 04:12:12,120 --> 04:12:16,200 DESCRIBE REALLY BRIEFLY IS 5553 04:12:16,200 --> 04:12:19,600 CONVINCING BIOGEN TO TAKE ON 5554 04:12:19,600 --> 04:12:24,080 SPINAL AND I WENT THERE WITH BY 5555 04:12:24,080 --> 04:12:27,960 OUR INSTITUTE DIRECTOR AT THE 5556 04:12:27,960 --> 04:12:35,720 TIME AND SAY COUPLE FOUNDATION 5557 04:12:35,720 --> 04:12:38,400 AND HAVE I WELL-INFORMED COUPLE 5558 04:12:38,400 --> 04:12:40,080 AND GETTING OUT TO BUY ONTO THE 5559 04:12:40,080 --> 04:12:41,960 IDEA AND WORKING ON A RELATIVELY 5560 04:12:41,960 --> 04:12:45,480 RARE DISEASE LIKE SPINAL 5561 04:12:45,480 --> 04:12:47,360 MUSCULAR ATROPHY IS GETTING 5562 04:12:47,360 --> 04:12:49,160 THERAPEUTICS GOING FOR THAT 5563 04:12:49,160 --> 04:12:50,560 DISEASE AND SO IT WAS A REAL 5564 04:12:50,560 --> 04:12:51,920 TURNING POINT AND IT WAS FUN TO 5565 04:12:51,920 --> 04:12:56,680 BE THERE FOR THAT. 5566 04:12:56,680 --> 04:12:58,640 >> IT WAS ASPIRING. 5567 04:12:58,640 --> 04:13:02,200 WE'RE ALMOST OUT OF TIME. 5568 04:13:02,200 --> 04:13:03,480 >> I THINK THE INCOMPETENTER 5569 04:13:03,480 --> 04:13:05,040 ACTION WITH THE PATIENTS OF 5570 04:13:05,040 --> 04:13:09,200 MULTIPLE IS IMPORTANT AS A 5571 04:13:09,200 --> 04:13:11,600 REALITY CHECK BECAUSE SOMETIMES 5572 04:13:11,600 --> 04:13:13,320 CERTAIN TESTS AND FREQUENCIES 5573 04:13:13,320 --> 04:13:15,760 ARE PERFECTLY LOGICAL AND GIVEN 5574 04:13:15,760 --> 04:13:17,440 THE CONDITIONS OF PATIENTS OFTEN 5575 04:13:17,440 --> 04:13:19,800 THAT LEADS TO VERY HIGH RATES OF 5576 04:13:19,800 --> 04:13:22,800 ATTRITION AND CLIP CAL TRAILS 5577 04:13:22,800 --> 04:13:24,560 AND SO IT'S IMPORTANT TO HAVE 5578 04:13:24,560 --> 04:13:26,000 THE SENSE OF WHAT PATIENTS ARE 5579 04:13:26,000 --> 04:13:29,840 LIKELY TO DO AND WHAT WOULD LIKE 5580 04:13:29,840 --> 04:13:31,400 TO BE DONE AND THOSE TWO COULD 5581 04:13:31,400 --> 04:13:32,200 BE VERY DIFFERENT. 5582 04:13:32,200 --> 04:13:34,280 >> IT WAS REALLY WONDERFUL TO 5583 04:13:34,280 --> 04:13:36,040 HEAR FROM ALL OF YOU WITH ALL OF 5584 04:13:36,040 --> 04:13:39,440 YOUR REMARKS. 5585 04:13:39,440 --> 04:13:40,560 WE ARE AT TIME. 5586 04:13:40,560 --> 04:13:41,880 IT'S BEEN AN HONOR TO HAVE YOU 5587 04:13:41,880 --> 04:13:44,200 WITH US TODAY AND AN INSPIRATION 5588 04:13:44,200 --> 04:13:45,520 TO HEAR THE SUCCESS STORIES 5589 04:13:45,520 --> 04:13:49,360 YOU'VE BEEN ABLE TO SHARE. 5590 04:13:49,360 --> 04:13:50,160 >> THANK YOU. 5591 04:13:50,160 --> 04:13:51,080 THANK YOU. 5592 04:13:51,080 --> 04:13:53,680 >> THANK YOU ALL. 5593 04:13:53,680 --> 04:13:55,360 THANK YOU ALL OF OUR SPEAKERS 5594 04:13:55,360 --> 04:14:00,280 FOR THAT AMAZING SESSION. 5595 04:14:00,280 --> 04:14:03,160 SO, I AM GOING TO TAKE US INTO 5596 04:14:03,160 --> 04:14:05,880 DAY ONE AND THE MEETING BEFORE I 5597 04:14:05,880 --> 04:14:08,200 DO THAT AND I WANT TO REMIND 5598 04:14:08,200 --> 04:14:09,680 EVERYONE THERE'S AN OPPORTUNITY 5599 04:14:09,680 --> 04:14:13,720 TO SCHEDULE ONE-ON-ONE MEETINGS 5600 04:14:13,720 --> 04:14:14,800 WITH NIH STAFF WE'VE BEEN 5601 04:14:14,800 --> 04:14:15,960 PLACING THE LENGTH IN THE CHAT 5602 04:14:15,960 --> 04:14:17,720 AND YOU CAN CHECK YOUR E-MAIL IF 5603 04:14:17,720 --> 04:14:18,760 YOU ARE REGISTERED FOR THE EVENT 5604 04:14:18,760 --> 04:14:20,360 AND IF YOU ARE NOT REGISTERED, 5605 04:14:20,360 --> 04:14:23,040 YOU CAN CERTAINLY STILL REGISTER 5606 04:14:23,040 --> 04:14:25,840 NOW OR TOMORROW AND ADDITIONALLY 5607 04:14:25,840 --> 04:14:27,760 TOMORROW AVERAGE, THERE'S 5608 04:14:27,760 --> 04:14:28,920 BREAKOUT SESSIONS FOR NON NIH 5609 04:14:28,920 --> 04:14:29,840 PARTICIPANTS OF THE MEETING AND 5610 04:14:29,840 --> 04:14:31,480 THERE'S A SURVEY THAT WE WOULD 5611 04:14:31,480 --> 04:14:33,120 LOVE FOR AWFUL YOU TO FILL OUT 5612 04:14:33,120 --> 04:14:35,120 TO HELP US FIGURE OUT TO BREAK 5613 04:14:35,120 --> 04:14:36,560 OUT ROOMS SO WITHOUT FURTHER 5614 04:14:36,560 --> 04:14:39,600 ADIEU OUR NEXT SESSION IS TITLED 5615 04:14:39,600 --> 04:14:41,920 ENGAGING TRAINEES IN EARLY STAGE 5616 04:14:41,920 --> 04:14:43,480 SCIENTISTS HOW TO WORK WITH 5617 04:14:43,480 --> 04:14:44,720 ACADEMIC RESEARCHERS AND THESE 5618 04:14:44,720 --> 04:14:46,760 ARE KIND OF LIGHTENING TALKS, 5619 04:14:46,760 --> 04:14:52,360 IT'S A LITTLE BIT MORE OF A 5620 04:14:52,360 --> 04:14:53,000 ROUND-ROBIN FIRESIDE CHAT WE'RE 5621 04:14:53,000 --> 04:14:55,440 GOING TO AND WE'RE DELIGHTED TO 5622 04:14:55,440 --> 04:15:01,440 HAVE Dr. NINA SCHOR MODERATE 5623 04:15:01,440 --> 04:15:04,120 THE SESSION AND NINA IS THE 5624 04:15:04,120 --> 04:15:05,880 SCIENTIFIC DIRECTOR OF NINDS 5625 04:15:05,880 --> 04:15:08,440 BEFORE COMING TO NIH, SHE SPENT 5626 04:15:08,440 --> 04:15:10,240 20 YEARS ON FACULTY AT THE 5627 04:15:10,240 --> 04:15:11,680 UNIVERSITY OF PITTSBURGH 5628 04:15:11,680 --> 04:15:13,760 BECOMING THE CAROLE PROFESSOR 5629 04:15:13,760 --> 04:15:15,640 THE PEDIATRIC RESEARCH AND THE 5630 04:15:15,640 --> 04:15:21,480 CHIEF OF DIVISION OF CHILD 5631 04:15:21,480 --> 04:15:23,600 NEUROLOGY AND THE DEPARTMENT OF 5632 04:15:23,600 --> 04:15:24,800 PEDIATRIC AND DEAN FOR MEDICAL 5633 04:15:24,800 --> 04:15:28,080 RESEARCH AND THE MEDICAL SCHOOL 5634 04:15:28,080 --> 04:15:34,680 AND IN 2006, THE CHAIR OF THE 5635 04:15:34,680 --> 04:15:37,360 AND AND AT UNIVERSITY OF 5636 04:15:37,360 --> 04:15:38,960 ROCHESTER AND CHILD IN 5637 04:15:38,960 --> 04:15:42,640 JANUARY 2018 AT WHICH POINT SHE 5638 04:15:42,640 --> 04:15:45,600 CAME TO AND FOR 27 YEARS IT WAS 5639 04:15:45,600 --> 04:15:48,320 CONTINUOUSLY FUNDED BY NIH AND 5640 04:15:48,320 --> 04:15:49,840 SHE CURRENTLY LEADS THE DIVISION 5641 04:15:49,840 --> 04:15:53,160 OF INTRAMURAL RESEARCH AND THE 5642 04:15:53,160 --> 04:15:54,960 ULTRARARE GENE TARGETING THERAPY 5643 04:15:54,960 --> 04:15:56,920 OR URGENT NETWORK AND SHE'S ALSO 5644 04:15:56,920 --> 04:15:59,560 DONE TONS OF WORK FOR NINDS ON 5645 04:15:59,560 --> 04:16:01,400 OUR PLAN FOR THE NEXT FEW YEARS 5646 04:16:01,400 --> 04:16:03,080 AS WELL AS CAREER DEVELOPMENT 5647 04:16:03,080 --> 04:16:05,560 PROGRAMS AT NINDS AND SHE SERVES 5648 04:16:05,560 --> 04:16:07,880 AS A NEUROLOGY DIRECTOR FOR THE 5649 04:16:07,880 --> 04:16:11,680 AMERICAN BOARD OF PSYCHIATRY AND 5650 04:16:11,680 --> 04:16:15,240 ONCE WE HIT AUGUST, Dr. SHORE 5651 04:16:15,240 --> 04:16:19,880 WILL MOVE ON AND UP IN NIH TO BE 5652 04:16:19,880 --> 04:16:22,720 THE DEPUTY DIRECTOR FOR ENTIRE 5653 04:16:22,720 --> 04:16:25,520 TEE OF NIH SO WITH THAT I WOULD 5654 04:16:25,520 --> 04:16:27,960 LIKE TO PASS THE TORCH TO Dr. 5655 04:16:27,960 --> 04:16:30,120 SHORE SO SHE CAN PICK US OFF 5656 04:16:30,120 --> 04:16:40,680 WITH THIS NEXT SESSION. 5657 04:16:40,680 --> 04:16:42,240 THANK YOU INFORM ALLFUL YOU FOR 5658 04:16:42,240 --> 04:16:45,040 JOINING US THIS AFTERNOON AND I 5659 04:16:45,040 --> 04:16:55,480 KNOW TIME IS JUST VERY THE 5660 04:16:57,040 --> 04:16:58,840 SESSION THAT FOLLOWS WILL BE ON 5661 04:16:58,840 --> 04:17:00,880 NOMINALLY ENGAGING TRAINEES AND 5662 04:17:00,880 --> 04:17:04,720 EARLY STAGE SCIENTISTS BUT I'M 5663 04:17:04,720 --> 04:17:06,720 HOPING WE GET A DISCUSSION GOING 5664 04:17:06,720 --> 04:17:08,280 WELL BEYOND THAT AND THAT 5665 04:17:08,280 --> 04:17:18,840 ENGAGES ALL OF YOU BECAUSE THIS 5666 04:17:20,640 --> 04:17:24,120 IS A ROLE AND FUNCTION THAT NON 5667 04:17:24,120 --> 04:17:26,480 PROFITS PLAY NOT ONLY FOR THE 5668 04:17:26,480 --> 04:17:27,440 SCIENTIFIC COMMUNITY BUT 5669 04:17:27,440 --> 04:17:34,160 ESPECIALLY FOR THE PATIENTS AND 5670 04:17:34,160 --> 04:17:35,240 FAMILIES THAT THEY SERVE, ONE OF 5671 04:17:35,240 --> 04:17:40,200 THE MOST CHALLENGING TIMES IN A 5672 04:17:40,200 --> 04:17:45,200 SCIENTIST LIFE IS AT THE 5673 04:17:45,200 --> 04:17:47,440 BEGINNING, HOW DO YOU CONVINCE 5674 04:17:47,440 --> 04:17:49,000 ANYBODY THAT YOU ARE HOPING TO 5675 04:17:49,000 --> 04:17:52,080 ANSWER AN IMPORTANT QUESTION AND 5676 04:17:52,080 --> 04:17:53,600 IMPACTFUL QUESTION AND HOW DO 5677 04:17:53,600 --> 04:17:56,320 YOU CONVINCE ANYBODY THAT YOU, 5678 04:17:56,320 --> 04:17:59,160 WHOSE NAME IS NOT YET KNOWN, TO 5679 04:17:59,160 --> 04:18:01,640 THE SCIENTIFIC COMMUNITY, THAT 5680 04:18:01,640 --> 04:18:04,040 YOU ARE THE BEST PERSON TO DO 5681 04:18:04,040 --> 04:18:06,280 THAT WORK AND I THINK MOST OF US 5682 04:18:06,280 --> 04:18:08,320 AT THAT STAGE IN OUR CAREERS 5683 04:18:08,320 --> 04:18:10,560 HAVE DEPENDED IN VERY LARGE 5684 04:18:10,560 --> 04:18:15,600 MEASURE ON FUNDING FROM VERY 5685 04:18:15,600 --> 04:18:17,960 DEDICATED NON-PROFIT 5686 04:18:17,960 --> 04:18:18,880 ORGANIZATION AND THERE'S ANOTHER 5687 04:18:18,880 --> 04:18:21,400 TIME IN A SCIENTIST LIFE THAT IS 5688 04:18:21,400 --> 04:18:22,840 CHALLENGING AS WELL AND THAT IS 5689 04:18:22,840 --> 04:18:25,200 RIGHT AROUND MID CAREER WHEN 5690 04:18:25,200 --> 04:18:27,040 YOU'VE HAD YOUR INDEPENDENT 5691 04:18:27,040 --> 04:18:31,240 GRANT FUNDING PERHAPS A FEDERAL 5692 04:18:31,240 --> 04:18:32,840 AGENCY OR LARGER NON PRIVILEGE 5693 04:18:32,840 --> 04:18:40,160 ITS AND YOU LOOK TO RENEW IT AND 5694 04:18:40,160 --> 04:18:44,160 AGAIN, THEY CAN PLAY A ROLE TO 5695 04:18:44,160 --> 04:18:46,080 HELP WITH PRELIMINARY D FOR THE 5696 04:18:46,080 --> 04:18:50,560 RENEWAL OF A GRANT WITH HELPING 5697 04:18:50,560 --> 04:18:52,320 TO DIRECT INDIVIDUALS IN A 5698 04:18:52,320 --> 04:18:57,680 DIRECTION THAT IS MOST HELPFUL, 5699 04:18:57,680 --> 04:18:59,000 IMPACTFUL, MEANING TO TO THE 5700 04:18:59,000 --> 04:19:01,040 LIVES OF PATIENTS AND FAMILIES 5701 04:19:01,040 --> 04:19:03,720 SO TO ADDRESS THIS WE HAVE FOUR 5702 04:19:03,720 --> 04:19:04,720 SPEAKERS TODAY. 5703 04:19:04,720 --> 04:19:08,000 THEY'RE EACH GOING TO GIVE 5704 04:19:08,000 --> 04:19:09,080 RELATIVELY BRIEF TALKS AND NONE 5705 04:19:09,080 --> 04:19:12,600 OF THEM HAVE SLIDES SO THIS WILL 5706 04:19:12,600 --> 04:19:19,160 BE VERY IMPROMPTU KIND OF A 5707 04:19:19,160 --> 04:19:20,600 DISCUSSION TWO OF OUR SPEAKERS 5708 04:19:20,600 --> 04:19:23,880 ARE FROM ACADEMIA AND TWO ARE 5709 04:19:23,880 --> 04:19:25,440 FROM NON PROFITS AND I'M GOING 5710 04:19:25,440 --> 04:19:28,920 TO INTEREST THEM EACH BEFORE 5711 04:19:28,920 --> 04:19:30,320 THEIR TALKS AND OUR FIRST 5712 04:19:30,320 --> 04:19:34,840 SPEAKER IS Dr. DANIEL OKO BYE. 5713 04:19:34,840 --> 04:19:37,120 HE GOT HIS PH.D IN NEUROSCIENCE 5714 04:19:37,120 --> 04:19:42,520 AT NYU AND HIS MD ALSO FROM NYU 5715 04:19:42,520 --> 04:19:44,400 AND HIS CLINICAL TRAINING HE DID 5716 04:19:44,400 --> 04:19:46,160 AT THE UNIVERSITY OF MIAMI AND 5717 04:19:46,160 --> 04:19:52,520 AT UCLA AND HE STAYED ON AT UCLA 5718 04:19:52,520 --> 04:19:54,360 WHERE HE IS NOW FACULTY AND 5719 04:19:54,360 --> 04:19:56,520 SPECIALIZES IN BEHAVIORAL 5720 04:19:56,520 --> 04:19:58,200 NURROLOGY SO I WILL HAND THE 5721 04:19:58,200 --> 04:20:04,720 FLOOR OVER TO Dr. OKOBI. 5722 04:20:04,720 --> 04:20:06,240 >> GOOD AFTERNOON. 5723 04:20:06,240 --> 04:20:10,320 I'M A BEHAVIORAL NEUROLOGY 5724 04:20:10,320 --> 04:20:11,880 FELLOW AND CLINICAL STRICT OR 5725 04:20:11,880 --> 04:20:17,560 AND JUNIOR ATTENDING IN SOME WAY 5726 04:20:17,560 --> 04:20:19,240 AND I WORK WITH THE GROUP THAT 5727 04:20:19,240 --> 04:20:20,760 WORKS ON DIFFERENT TYPES OF 5728 04:20:20,760 --> 04:20:24,480 NEUROLOGICAL DISEASES AND 5729 04:20:24,480 --> 04:20:26,280 TRADITIONALLY IT'S BEEN AT OF 5730 04:20:26,280 --> 04:20:30,000 GENETIC BASED AWE AT THE SAME 5731 04:20:30,000 --> 04:20:34,560 TIME AND EPILEPSIES AND I WANTED 5732 04:20:34,560 --> 04:20:35,960 TO CONTINUE A LITTLE BIT TOWARDS 5733 04:20:35,960 --> 04:20:37,600 DISEASE THAT A LOT OF PEOPLE 5734 04:20:37,600 --> 04:20:40,840 HAVE BEEN THINKING ABOUT AND 5735 04:20:40,840 --> 04:20:44,160 IT'S DEMENTIA AND WHEN I CAME 5736 04:20:44,160 --> 04:20:46,680 OVER, TO WORK IN RESIDENCY AND I 5737 04:20:46,680 --> 04:20:49,120 TALKED TO THE CHAIR AND I TALKED 5738 04:20:49,120 --> 04:20:51,360 ABOUT LOOKING AT THE PROJECTS 5739 04:20:51,360 --> 04:20:54,360 ABOUT WHAT KIND OF THE BEST 5740 04:20:54,360 --> 04:20:55,840 QUESTIONS TO ANSWER AND WHAT THE 5741 04:20:55,840 --> 04:20:58,280 FIELD IS KIND OF LOOKING FOR 5742 04:20:58,280 --> 04:21:01,560 BECAUSE I ACTUALLY WORKED ON 5743 04:21:01,560 --> 04:21:02,960 BEHAVIOR AND I HAD NOT REALLY 5744 04:21:02,960 --> 04:21:04,960 THOUGHT ABOUT BEHAVIORAL 5745 04:21:04,960 --> 04:21:10,800 NEUROLOGY AND BASICALLY, 5746 04:21:10,800 --> 04:21:13,680 DEVELOPMENTAL DISABILITY IN THE 5747 04:21:13,680 --> 04:21:15,480 ADULT POPULATION IT'S DEMENTIA 5748 04:21:15,480 --> 04:21:19,480 AND NEURO PSYCHIATRY AND I HAD 5749 04:21:19,480 --> 04:21:24,240 BEEN A MEMBER OF THE SOCIETY FOR 5750 04:21:24,240 --> 04:21:30,880 NEUROSCIENCE AND I WANTED TO 5751 04:21:30,880 --> 04:21:34,520 ATTACK IT TO LOOK AT THE 5752 04:21:34,520 --> 04:21:37,760 CIRCUITRY AND DEMENTIA WHICH NOT 5753 04:21:37,760 --> 04:21:41,280 HAS MANY PEOPLE HAVE AND MY IDEA 5754 04:21:41,280 --> 04:21:43,880 OF LOOKING AT THE DEMENTIA WAS 5755 04:21:43,880 --> 04:21:46,360 LOOKING AT NOT EVERYONE IS 5756 04:21:46,360 --> 04:21:47,480 ACTUALLY LOOKING INTO SO ONE OF 5757 04:21:47,480 --> 04:21:52,280 THE DEMENTIAS I WAS INTERESTED 5758 04:21:52,280 --> 04:21:57,600 IN IS AT UCLA WE HAVE A 5759 04:21:57,600 --> 04:21:59,600 SPECIALIST EXPERT THAT RUNS A 5760 04:21:59,600 --> 04:22:02,480 FELLOWSHIP I'M A PART OF AND FOR 5761 04:22:02,480 --> 04:22:04,240 TEMPORAL DEMENTIA IS MORE 5762 04:22:04,240 --> 04:22:08,400 GENETIC THAN THE AVERAGE 5763 04:22:08,400 --> 04:22:16,360 DEMENTIA AN AND IT TENDS TO BE E 5764 04:22:16,360 --> 04:22:18,400 BEHAVIORAL VANT WHICH IS WHEN 5765 04:22:18,400 --> 04:22:22,440 PEOPLE NOTICE THAT THEIR LOVED 5766 04:22:22,440 --> 04:22:26,200 ONES CAN BE THEY MIGHT EATING 5767 04:22:26,200 --> 04:22:27,160 SWEETS AND THEY MIGHT START TO 5768 04:22:27,160 --> 04:22:29,880 GET VERY SEXUALLY FRANK IF THEY 5769 04:22:29,880 --> 04:22:31,560 WERE LIKE A RESERVED PERSON SO 5770 04:22:31,560 --> 04:22:33,800 LIKE A CHANGE IN-PERSON A LOT 5771 04:22:33,800 --> 04:22:38,960 AND JUST BEHAVIORAL AUD TEES AND 5772 04:22:38,960 --> 04:22:40,240 THAT PRE DATES WHAT WE THINK 5773 04:22:40,240 --> 04:22:46,400 ABOUT DEMENTIA WHICH IS MEMORY 5774 04:22:46,400 --> 04:22:50,160 ISSUES WHERE PEOPLE HAVE 5775 04:22:50,160 --> 04:22:53,200 LANGUAGE ISSUES AND TO BE ABLE 5776 04:22:53,200 --> 04:22:58,520 TO COMMUNICATE IS TO THOSE ARE 5777 04:22:58,520 --> 04:23:01,000 THE TWO TYPES OF DEMENTIA AND 5778 04:23:01,000 --> 04:23:03,000 WHAT I'M BUILDING ON IS THE A 5779 04:23:03,000 --> 04:23:04,680 LOT OF PEOPLE HAVE BEEN WORKING 5780 04:23:04,680 --> 04:23:06,840 ON THIS AND IN SOME RESPECT SO A 5781 04:23:06,840 --> 04:23:08,160 LOT OF PEOPLE HAVE BEEN WORKING 5782 04:23:08,160 --> 04:23:11,000 ON THE GENETICS AND 5783 04:23:11,000 --> 04:23:12,440 UNDERSTANDING HOW THIS IS IN THE 5784 04:23:12,440 --> 04:23:13,800 BRAIN CAUSES LOTS OF DAMAGE AND 5785 04:23:13,800 --> 04:23:19,120 I WANT TO BE ONE OF THE PEOPLE O 5786 04:23:19,120 --> 04:23:21,720 TO UNDERSTAND IT IS AS THE 5787 04:23:21,720 --> 04:23:24,400 DEMENTIA IS RAIN BECAUSE WE 5788 04:23:24,400 --> 04:23:25,400 ACTUALLY CAN RESTRAIN CIRCUITS 5789 04:23:25,400 --> 04:23:35,920 AND PEOPLE HAVE BEEN LOOK AT SO 5790 04:23:42,000 --> 04:23:44,200 I WANT TO SEE ALSO THERE'S 5791 04:23:44,200 --> 04:23:47,360 SOMETHING THERE IN TERMS OF THE 5792 04:23:47,360 --> 04:23:49,280 ACTUAL CIRCUITRY BEING BROKEN 5793 04:23:49,280 --> 04:23:52,360 DOWN SO I CAN AT LEAST ESTABLISH 5794 04:23:52,360 --> 04:23:54,960 THAT IF WE TROY TREATMENTS OF 5795 04:23:54,960 --> 04:23:58,960 ACTUAL LOW CAN REWIRE OR FIX 5796 04:23:58,960 --> 04:24:00,960 WHAT IS BEING BROKE EASTBOUND 5797 04:24:00,960 --> 04:24:07,920 DOWN AS THE D DEMENTIA IS HELPIG 5798 04:24:07,920 --> 04:24:09,920 IT'S A WAY TO BRING DECELERATION 5799 04:24:09,920 --> 04:24:13,320 TO THE PATTERN OF DEMENTIA AND 5800 04:24:13,320 --> 04:24:15,000 THE THING THAN IS NOT UNIQUE TO 5801 04:24:15,000 --> 04:24:17,280 THE FRONTAL TEMPORAL DEMENTIA IS 5802 04:24:17,280 --> 04:24:19,360 THERE IS NOT REALLY A TREATMENT 5803 04:24:19,360 --> 04:24:22,360 THAT IS REVERSING THE 5804 04:24:22,360 --> 04:24:25,720 FUNDAMENTAL DAMAGE THAT IS 5805 04:24:25,720 --> 04:24:27,360 HAPPENING YET AND AS WE HEARD 5806 04:24:27,360 --> 04:24:29,600 EARLIER ABOUT FDA APPROVALS FOR 5807 04:24:29,600 --> 04:24:31,800 MEDICATIONS JUST BECAUSE THE FD 5808 04:24:31,800 --> 04:24:33,360 APPROVALS THE MEDICATION DOESN'T 5809 04:24:33,360 --> 04:24:40,200 MEAN THAT EVERYONE WHO NEEDS IT 5810 04:24:40,200 --> 04:24:43,280 OR GETS ACCESSIBLE THERAPEUTIC 5811 04:24:43,280 --> 04:24:45,360 RESOLUTION SO WE NEED TO DO A 5812 04:24:45,360 --> 04:24:54,800 LOT OF DIFFERENT THINGS 245 WE 5813 04:24:54,800 --> 04:24:56,640 DON'T KNOW WHAT WILL WORK BUT IF 5814 04:24:56,640 --> 04:24:59,840 WE FIND SOMETHING, WE SHOULD TRY 5815 04:24:59,840 --> 04:25:00,000 IT. 5816 04:25:00,000 --> 04:25:01,160 SO I'LL STOP THERE BECAUSE I 5817 04:25:01,160 --> 04:25:11,680 KNOW THERE ARE OTHER PEOPLE AND 5818 04:25:19,920 --> 04:25:30,200 YOU MIGHT BE ON MUTE. 5819 04:25:32,760 --> 04:25:36,280 >> THANK YOU AND OUR NEXT 5820 04:25:36,280 --> 04:25:39,960 SPEAKER IS Dr. ERIC MORROW. 5821 04:25:39,960 --> 04:25:41,720 Dr. MORROW GOT HIS PH.D IN 5822 04:25:41,720 --> 04:25:43,240 GENETICS AND NEURO DEVELOPMENT 5823 04:25:43,240 --> 04:25:53,760 AT HARVARD AND OF MOLECULAR CELL 5824 04:26:00,760 --> 04:26:02,640 BIOLOGY AND Dr. MORROW. 5825 04:26:02,640 --> 04:26:09,200 >> THANK YOU, VERY MUCH, Dr. 5826 04:26:09,200 --> 04:26:10,200 SCHOR. 5827 04:26:10,200 --> 04:26:13,640 WE GET THUMBS UP, I'M THRILLED 5828 04:26:13,640 --> 04:26:15,400 TO BE PARTICIPATING IN THIS 5829 04:26:15,400 --> 04:26:18,200 CONFERENCE AND I'VE ENJOYED THE 5830 04:26:18,200 --> 04:26:18,760 SESSIONS. 5831 04:26:18,760 --> 04:26:23,240 SO AS Dr. SCHOR SAID, I'M AT 5832 04:26:23,240 --> 04:26:24,560 BROWN UNIVERSITY AND I'M A 5833 04:26:24,560 --> 04:26:30,280 PHYSICIAN SCIENTIST AND I WORK 5834 04:26:30,280 --> 04:26:30,880 IN A BASIC SCIENCE DEPARTMENT 5835 04:26:30,880 --> 04:26:37,680 BUT I ALSO WORK IN CLINICAL 5836 04:26:37,680 --> 04:26:38,600 DEPARTMENTS WHERE YOU DO 5837 04:26:38,600 --> 04:26:40,600 RESEARCH WITH FAMILIES WITH 5838 04:26:40,600 --> 04:26:45,160 NEURO GENETIC DISORDERS AND IT'S 5839 04:26:45,160 --> 04:26:46,640 MY CLINICAL RESEARCH SO THE 5840 04:26:46,640 --> 04:26:48,760 PATIENTS ORIENTED WORK WHERE 5841 04:26:48,760 --> 04:26:53,840 I'VE COME INTO CONTACT WITH 5842 04:26:53,840 --> 04:26:56,480 DIFFERENT FAMILY-LED NON PROFITS 5843 04:26:56,480 --> 04:26:59,800 SO ONE GENETIC DISORDER IS 5844 04:26:59,800 --> 04:27:01,320 CHRISTIANSON SYNDROME AND WE 5845 04:27:01,320 --> 04:27:05,640 NAMED IT AFTER THE SPEED TRICK 5846 04:27:05,640 --> 04:27:08,160 AN WHO NEWER LOGIC DISORDERS 5847 04:27:08,160 --> 04:27:12,680 CAUSES DEVELOPMENTAL DISABILITY 5848 04:27:12,680 --> 04:27:15,040 AND AS WELL AS NEURODEGENERATIVE 5849 04:27:15,040 --> 04:27:17,880 FEATURES AND I WAS WORKING ON 5850 04:27:17,880 --> 04:27:22,440 THIS CONDITION IN MY BASIC 5851 04:27:22,440 --> 04:27:27,240 SCIENCE LAB AND HAD NOT STARTED 5852 04:27:27,240 --> 04:27:28,880 WORKING WITH THE FAMILIES AND I 5853 04:27:28,880 --> 04:27:30,520 GOT AN E-MAIL OF AN EFFECTED, 5854 04:27:30,520 --> 04:27:34,400 FROM THE MOTHER OF A EFFECTED 5855 04:27:34,400 --> 04:27:36,920 PATIENTS PERSON, MALE WITH THIS 5856 04:27:36,920 --> 04:27:38,200 CONTINUE AND SAYING THAT SHE 5857 04:27:38,200 --> 04:27:43,200 JUST GOT THE GENETIC DIAGNOSIS 5858 04:27:43,200 --> 04:27:46,800 AND SHE DOESN'T KNOW ABOUT THE 5859 04:27:46,800 --> 04:27:48,000 CONDITION BUT THEY READ A PAPER 5860 04:27:48,000 --> 04:27:50,080 FROM READING THE INTERNET AND 5861 04:27:50,080 --> 04:27:57,480 WHAT I SPEAK WITH HER ABOUT IT 5862 04:27:57,480 --> 04:28:00,480 AND THIS WAS 2010 OR 2011 AND 5863 04:28:00,480 --> 04:28:02,480 HER NAME WAS DEBBIE NASH AND 5864 04:28:02,480 --> 04:28:03,760 I'VE HAD THE HONOR OF WORKING 5865 04:28:03,760 --> 04:28:05,880 WITH DEBBIE WHO FOUNDED THE 5866 04:28:05,880 --> 04:28:08,240 CHRISTIANSON SYNDROME 5867 04:28:08,240 --> 04:28:11,400 ASSOCIATION AND IT'S A 5868 04:28:11,400 --> 04:28:12,960 NON-PROFIT TO RAISE AWARENESS 5869 04:28:12,960 --> 04:28:15,760 ABOUT CHRISTIANSON SYNDROME AND 5870 04:28:15,760 --> 04:28:19,000 SUPPORT RESEARCH AND SO I'VE HAD 5871 04:28:19,000 --> 04:28:22,680 THE HONOR AND PRIVILEGE OF 5872 04:28:22,680 --> 04:28:24,440 WORKING WITH FAMILIES WHO RUN 5873 04:28:24,440 --> 04:28:30,320 NON PROFITS FROM THE VERY EARLY 5874 04:28:30,320 --> 04:28:35,080 STAGES AND THE FOUNDING OF THE 5875 04:28:35,080 --> 04:28:36,440 KRISTEN SON FOUNDATION WENT LIKE 5876 04:28:36,440 --> 04:28:40,440 THIS AND DEBBIE HAVE YOU MET 5877 04:28:40,440 --> 04:28:44,040 OTHER FAMILIES AND ONE OF THE 5878 04:28:44,040 --> 04:28:48,000 FAMILIES STARTED A Facebook 5879 04:28:48,000 --> 04:28:58,560 GROUP AND WOAD OFFERED AT BROWN 5880 04:29:04,440 --> 04:29:14,920 UNIVERSITY TO DONATE SPACE OR TO 5881 04:29:15,960 --> 04:29:17,800 THE FIRST CONFERENCE CAME 5882 04:29:17,800 --> 04:29:22,960 TOGETHER AT THAT FIRST MEETING 5883 04:29:22,960 --> 04:29:25,800 IN 2013 AND AT BROWN UNIVERSITY 5884 04:29:25,800 --> 04:29:27,520 AND THE RESEARCH HAS GROWN AND 5885 04:29:27,520 --> 04:29:32,560 DEVELOPED AND IN MY GROUP AND IN 5886 04:29:32,560 --> 04:29:37,760 OTHER SCIENTIFIC OVER THE LAST 5887 04:29:37,760 --> 04:29:42,440 DECADE AND IN 2015 AND WE WERE 5888 04:29:42,440 --> 04:29:52,960 FORTUNATE TO GET THEY HAVEN'T 5889 04:30:23,280 --> 04:30:24,600 MET FAMILIES THAT ARE EFFECTED 5890 04:30:24,600 --> 04:30:26,520 AND THESE CONFERENCES ARE 5891 04:30:26,520 --> 04:30:29,880 WONDERFUL TO HAVE THE 5892 04:30:29,880 --> 04:30:40,360 OPPORTUNITY TO BRING THEY'RE 5893 04:30:51,600 --> 04:30:53,760 MORE AND MORE CLINICAL AND MORE 5894 04:30:53,760 --> 04:30:55,080 AND MORE INTERNATIONAL AND 5895 04:30:55,080 --> 04:30:56,520 THERE'S AN INTERNATIONAL AND 5896 04:30:56,520 --> 04:31:07,040 THERE'S A SURE PEE AN WHERE TIVE 5897 04:31:11,800 --> 04:31:22,280 FAMILIES AND LANGUAGES AND AND 5898 04:31:39,600 --> 04:31:40,960 ONE POINT THAT I WILL MAKE THAT 5899 04:31:40,960 --> 04:31:51,440 I THINK HAS BEEN MADE AND ON 5900 04:32:09,320 --> 04:32:15,040 TRAINEES AND ALSO FOR HELPING 5901 04:32:15,040 --> 04:32:18,200 THE SO FOR EXAMPLE AND TO 5902 04:32:18,200 --> 04:32:19,560 CHRISTIANSON DIN DROP WE'VE 5903 04:32:19,560 --> 04:32:22,960 RECEIVED FUNDING AND 5904 04:32:22,960 --> 04:32:33,520 CHRISTIANSON AND AND LARGER ONE 5905 04:33:10,000 --> 04:33:20,440 SUCH AS THE OUR WORK OF OTHER 5906 04:33:20,720 --> 04:33:23,200 PEOPLE IN THE WORLD THE MORE 5907 04:33:23,200 --> 04:33:25,600 ESTABLISHED NON PROFITS AND 5908 04:33:25,600 --> 04:33:29,600 AUTISM AND EP DEPOSIT SEE AND 5909 04:33:29,600 --> 04:33:32,600 LARGER AREAS WHERE THE RARE 5910 04:33:32,600 --> 04:33:34,040 GENETIC DISORDERS COME TOGETHER 5911 04:33:34,040 --> 04:33:36,040 AND REALLY CRITICAL AND SO I 5912 04:33:36,040 --> 04:33:40,240 THINK THAT RELATIONSHIP HAS BEEN 5913 04:33:40,240 --> 04:33:44,200 CRITICAL AND BEFORE I WRAP-UP IS 5914 04:33:44,200 --> 04:33:46,440 THERE HAVE BEEN I THINK SOME 5915 04:33:46,440 --> 04:33:47,720 VERY, VERY INTERESTING FUNDING 5916 04:33:47,720 --> 04:33:49,280 GRANTS AND MAYBE WE CAN DISCUSS 5917 04:33:49,280 --> 04:33:54,680 THIS IN THE DISCUSSION PERIOD 5918 04:33:54,680 --> 04:33:56,000 AND FROM NEW FOUNDATION AND 5919 04:33:56,000 --> 04:33:57,640 MONDAY PROFITS THAT REPRESENT 5920 04:33:57,640 --> 04:34:00,040 COP AGO RACES AND BETWEEN THE 5921 04:34:00,040 --> 04:34:10,880 NON PROFITS AND THE RESEA RESEAS 5922 04:34:11,680 --> 04:34:13,720 THAT WOVE HAD PLIED FOR IS THE 5923 04:34:13,720 --> 04:34:15,040 ZUCKERBERG INSTITUTE HAS FUNDED 5924 04:34:15,040 --> 04:34:18,400 A SERIES OF GRANTS AND THE AREA 5925 04:34:18,400 --> 04:34:21,760 OF RARE GENETIC DISORDERS ONE 5926 04:34:21,760 --> 04:34:23,200 CALLED RARE IS ONE AND THE 5927 04:34:23,200 --> 04:34:33,720 SECOND ONE LAST MAY AND ON THE 5928 04:34:34,960 --> 04:34:37,080 NON PROFITS ARE OWE ON CANNES 5929 04:34:37,080 --> 04:34:38,680 TOGETHER ON A SCIENTIFIC 5930 04:34:38,680 --> 04:34:41,680 ENDEAVOR WHICH REALLY ORGANIZES 5931 04:34:41,680 --> 04:34:43,200 THE COLLABORATION BETWEEN THE 5932 04:34:43,200 --> 04:34:44,840 ACADEMIC RESEARCHERS AND THE 5933 04:34:44,840 --> 04:34:52,120 NON-PROFIT IN THE APPLICATIONS I 5934 04:34:52,120 --> 04:34:53,680 THINK THESE CONFERENCES IN THE 5935 04:34:53,680 --> 04:34:55,160 EXCHANGE WHETHER IT'S E-MAIL, 5936 04:34:55,160 --> 04:35:02,520 SOCIAL MEDIA, ARE CRITICAL IT'S 5937 04:35:02,520 --> 04:35:06,360 A TWO-WAY STREET AND INSPIRING 5938 04:35:06,360 --> 04:35:07,440 COLLABORATION AND THE 5939 04:35:07,440 --> 04:35:10,120 RELATIONSHIPS BETWEEN THE EARLY 5940 04:35:10,120 --> 04:35:14,800 FORMING NON PROFITS AND THE MORE 5941 04:35:14,800 --> 04:35:21,680 ESTABLISHED IS I THINK THE THEME 5942 04:35:21,680 --> 04:35:23,800 IS WE HAVE A LOT TO LEARN FROM 5943 04:35:23,800 --> 04:35:29,520 EACH OTHER AND THANK YOU. 5944 04:35:29,520 --> 04:35:33,000 >> THANK YOU, Dr. MORROW. 5945 04:35:33,000 --> 04:35:37,840 OUR NEXT SPEAKER IS Dr. DIANNE 5946 04:35:37,840 --> 04:35:38,600 BOVENKAMP. 5947 04:35:38,600 --> 04:35:40,480 SHE GOT HER PH.D FROM QUEEN'S 5948 04:35:40,480 --> 04:35:43,320 UNIVERSITY IN KING STON, 5949 04:35:43,320 --> 04:35:46,120 ONTARIO, AND WENT ON TO DO A 5950 04:35:46,120 --> 04:35:56,160 POSTDOC TO BAL FELLOWSHIP. 5951 04:35:56,160 --> 04:35:57,480 SHE'S VICE PRESIDENT FOR 5952 04:35:57,480 --> 04:35:58,680 SCIENTIFIC AFFAIRS AT BRIGHT 5953 04:35:58,680 --> 04:36:00,640 FOCUS FOUNDATION. 5954 04:36:00,640 --> 04:36:02,480 Dr. BOVENKAMP. 5955 04:36:02,480 --> 04:36:04,640 >> GREAT, CAN EVERYBODY HEAR ME 5956 04:36:04,640 --> 04:36:06,400 BECAUSE I WAS TOLD MY VOLUME WAS 5957 04:36:06,400 --> 04:36:06,800 LOW BEFORE? 5958 04:36:06,800 --> 04:36:07,680 >> SOUNDS GOOD. 5959 04:36:07,680 --> 04:36:10,840 >> OK. 5960 04:36:10,840 --> 04:36:14,040 SO I'M WITH BRIGHTFOCUS, 12 5961 04:36:14,040 --> 04:36:15,880 YEARS NOW IN VARIOUS CAPACITY 5962 04:36:15,880 --> 04:36:19,000 BUT RIGHT NOW I'M ALMOST ALL 5963 04:36:19,000 --> 04:36:22,280 ASPECTS OF OUR GRANTING. 5964 04:36:22,280 --> 04:36:26,520 LIKE OTHER ORGANIZATIONS, THAT 5965 04:36:26,520 --> 04:36:28,920 WE -- OTHER NON PROFITS, THE 5966 04:36:28,920 --> 04:36:31,040 SCIENCE HELPS WITH THE 5967 04:36:31,040 --> 04:36:32,440 FUNDRAISING AS WELL AS THE 5968 04:36:32,440 --> 04:36:35,280 COMMUNICATIONS AS WELL AND SO 5969 04:36:35,280 --> 04:36:36,320 WE'VE BEEN NEXT YEAR IS GOING TO 5970 04:36:36,320 --> 04:36:38,200 BE OUR 50th ANNIVERSARY 5971 04:36:38,200 --> 04:36:39,480 ACTUALLY AND WE USED TO BE 5972 04:36:39,480 --> 04:36:40,520 CALLED AMERICAN HEALTH 5973 04:36:40,520 --> 04:36:45,600 ASSISTANCE FOUNDATION AND WE 5974 04:36:45,600 --> 04:36:47,680 REBRANDED IN 2013 SO SOME OF YOU 5975 04:36:47,680 --> 04:36:50,160 WHO HAVE HAD AN AWARD THAT WAS 5976 04:36:50,160 --> 04:36:51,880 US AND SO YEAH SO WE'VE BEEN 5977 04:36:51,880 --> 04:36:54,000 AROUND A WHILE AND YOU KNOW, FOR 5978 04:36:54,000 --> 04:36:57,240 THE LAST TWO YEARS, WE'VE GIVEN 5979 04:36:57,240 --> 04:36:58,800 $25 MILLION IN GRANTS EACH YEAR 5980 04:36:58,800 --> 04:37:00,920 IN OUR THREE PROGRAMS SO WE FUND 5981 04:37:00,920 --> 04:37:03,880 ALZHEIMER'S DISEASE, GLAUCOMA 5982 04:37:03,880 --> 04:37:05,880 AND MACULAR DEGENERATION AND 5983 04:37:05,880 --> 04:37:07,040 WHAT'S THE CONNECTION? 5984 04:37:07,040 --> 04:37:10,160 SO WHEN WE STARTED OUT SMALL IN 5985 04:37:10,160 --> 04:37:12,880 1973, IT WAS REALLY THE THING 5986 04:37:12,880 --> 04:37:13,680 THAT BINDS IT ALL TOGETHER IS 5987 04:37:13,680 --> 04:37:16,280 THEIR DISEASES OF AGING, RIGHT. 5988 04:37:16,280 --> 04:37:17,640 AND A LOT OF PEOPLE GET THEM 5989 04:37:17,640 --> 04:37:19,200 WHEN THEY GET OLDER AND A LOT OF 5990 04:37:19,200 --> 04:37:21,440 THE FOUNDERS FAMILY MEMBERS HAD 5991 04:37:21,440 --> 04:37:22,640 THEM AND NOW ACTUALLY THERE'S A 5992 04:37:22,640 --> 04:37:29,000 LOT OF SCIENTIFIC TIES SO 5993 04:37:29,000 --> 04:37:30,640 THEY'RE ALL GENERATIVE DISEASES 5994 04:37:30,640 --> 04:37:32,360 AND AT THE FOUNDATION WE HAVE 5995 04:37:32,360 --> 04:37:35,520 OUR OFFICIAL JOURNAL IS 5996 04:37:35,520 --> 04:37:36,840 MOLECULAR DEGENERATION AND A LOT 5997 04:37:36,840 --> 04:37:38,280 OF PUBLICATIONS THERE WITH BOTH 5998 04:37:38,280 --> 04:37:40,360 THE VISION AND THE BRAIN 5999 04:37:40,360 --> 04:37:41,640 CONNECTION THAT WE FUND. 6000 04:37:41,640 --> 04:37:44,360 WE FUND RESEARCH AS WELL AS 6001 04:37:44,360 --> 04:37:49,000 WE'RE CONNECTIONING WITH I THINK 6002 04:37:49,000 --> 04:37:51,040 IT'S ABOUT 500,000 PEOPLE ACROSS 6003 04:37:51,040 --> 04:37:53,040 THE U.S. AND BEYOND BECAUSE 6004 04:37:53,040 --> 04:37:56,160 WE'RE AN INTERNATIONAL FUNDER 6005 04:37:56,160 --> 04:37:59,800 AND WE GIVE NOT ONLY GRANTS TO 6006 04:37:59,800 --> 04:38:01,800 SCIENTISTS AND OTHER NON 6007 04:38:01,800 --> 04:38:03,560 MONETARY SUPPORT AS I'LL JUST 6008 04:38:03,560 --> 04:38:07,520 BRIEFLY ALIGN LATER, BUT WE ALSO 6009 04:38:07,520 --> 04:38:08,600 COMMUNICATE SCIENCE TO 6010 04:38:08,600 --> 04:38:15,480 INDIVIDUALS AND ACTUALLY WE HAVR 6011 04:38:15,480 --> 04:38:16,640 COMMUNICATIONS OF ALL OF THE 6012 04:38:16,640 --> 04:38:21,000 RESEARCH THAT WE FUND AND THE 6013 04:38:21,000 --> 04:38:23,440 BIG ACHIEVEMENTS IN THE FIELD TO 6014 04:38:23,440 --> 04:38:25,600 EFFECTED FAMILIES AND WE HAVE A 6015 04:38:25,600 --> 04:38:30,840 1-800 NUMBER SO WE STRADDLE THE 6016 04:38:30,840 --> 04:38:39,080 LINE BETWEEN I WOULD SAY THERE'S 6017 04:38:39,080 --> 04:38:41,760 FOUR WAYS THAT I'LL BREAK IT 6018 04:38:41,760 --> 04:38:43,880 DOWN THAT WE ENGAGE TRAININGS IN 6019 04:38:43,880 --> 04:38:45,440 EARLY STAGE SCIENTISTS AND I 6020 04:38:45,440 --> 04:38:49,640 KNOW THAT EVERY NON-PROFIT IS 6021 04:38:49,640 --> 04:38:51,280 DIFFERENT AND SOME PEOPLE DO 6022 04:38:51,280 --> 04:38:54,600 MORE AND ONE OF THE FINANCIAL SO 6023 04:38:54,600 --> 04:38:55,640 WE HAVE GRANTS IF ALL THROW 6024 04:38:55,640 --> 04:38:58,120 PROGRAMS AND FELLOWSHIPS AND ALL 6025 04:38:58,120 --> 04:39:02,160 OF THEM AND PEOPLE WHO ARE WE 6026 04:39:02,160 --> 04:39:03,760 HAVE NEW INVESTIGATOR AWARDS AS 6027 04:39:03,760 --> 04:39:05,400 WELL AS SEASONED INDIVIDUALS 6028 04:39:05,400 --> 04:39:07,880 AWARDS OR STANDARDS AWARDS SO WE 6029 04:39:07,880 --> 04:39:09,320 FUND THE WHOLE GAMUT AND WE ARE 6030 04:39:09,320 --> 04:39:12,160 MORE OF A TRADITIONAL, WE TEND 6031 04:39:12,160 --> 04:39:15,920 TO NOT NECESSARILY SAND OUT 6032 04:39:15,920 --> 04:39:18,360 SPECIFIC IDEAS OR SPECIFIC 6033 04:39:18,360 --> 04:39:20,720 RFPs IT'S INVESTIGATOR 6034 04:39:20,720 --> 04:39:23,640 INITIATED AND THIS IS THIS COULD 6035 04:39:23,640 --> 04:39:25,400 BE WHERE WE WE ALSO REALLY TRY 6036 04:39:25,400 --> 04:39:27,880 AND ENCOURAGE PEOPLE LIKE DANIEL 6037 04:39:27,880 --> 04:39:32,440 TO COME IN AND WHO ARE EXPERTS 6038 04:39:32,440 --> 04:39:36,440 IN ONE FIELD TO COME IN AND 6039 04:39:36,440 --> 04:39:41,040 APPLY AND LIKE WITH ERIC WE 6040 04:39:41,040 --> 04:39:45,080 ACTUALLY DO AGREE WE DO FUND 6041 04:39:45,080 --> 04:39:48,240 IT'S GOOD FOR PEOPLE TO COME IN 6042 04:39:48,240 --> 04:39:50,040 AND GET FUNDING TO SHOW THE 6043 04:39:50,040 --> 04:39:51,000 CROSS OVER BETWEEN ALZHEIMER'S 6044 04:39:51,000 --> 04:39:59,840 AND OTHER DEMENTIA OR MAYBE A 6045 04:39:59,840 --> 04:40:02,800 RARE FORM OF MACULAR 6046 04:40:02,800 --> 04:40:04,720 DEGENERATION SO PEOPLE SHOULD 6047 04:40:04,720 --> 04:40:06,240 TRY AND AND WE'VE PARTNERED WITH 6048 04:40:06,240 --> 04:40:07,440 OTHER ORGANIZATIONS BEFORE TOO 6049 04:40:07,440 --> 04:40:09,440 SO YOU ARE HITTING ALL THE OF 6050 04:40:09,440 --> 04:40:11,680 THE -- HOW DO YOU FIND THE 6051 04:40:11,680 --> 04:40:14,800 FOUNDATION THAT IS IMPORTANT AND 6052 04:40:14,800 --> 04:40:17,280 SO WE ACTUALLY DO HEALTH WITH NO 6053 04:40:17,280 --> 04:40:18,240 HOUSE AND SOME OF THE OTHER 6054 04:40:18,240 --> 04:40:20,120 THINGS THAT WE DO. 6055 04:40:20,120 --> 04:40:24,120 WE HAVE SIGNATURE CONFERENCES WE 6056 04:40:24,120 --> 04:40:29,560 CALL FAST TRACK AND IT'S A 6057 04:40:29,560 --> 04:40:30,760 BOOTCAMP AND HEAR FROM 6058 04:40:30,760 --> 04:40:32,720 INVESTIGATORS IN THE FIELD AND 6059 04:40:32,720 --> 04:40:34,480 NETWORK WITH THEIR COLLEAGUES 6060 04:40:34,480 --> 04:40:37,680 AND WITH SEASONED INDIVIDUALS 6061 04:40:37,680 --> 04:40:39,120 AND AS WELL AS WE HAVE BREAKFAST 6062 04:40:39,120 --> 04:40:41,000 AT MAJOR CONFERENCES WHERE 6063 04:40:41,000 --> 04:40:44,240 PEOPLE CAN NETWORK AND WEBINARS 6064 04:40:44,240 --> 04:40:48,480 AND THOSE ARE LEARNING HOW TO 6065 04:40:48,480 --> 04:40:48,680 CONNECT. 6066 04:40:48,680 --> 04:40:49,880 THERE'S OTHER WAYS THAT WE CAN 6067 04:40:49,880 --> 04:40:52,200 HELP TO CONNECT TOO SO A LOT OF 6068 04:40:52,200 --> 04:40:53,600 PEOPLE WHILE TRYING TO MAKE 6069 04:40:53,600 --> 04:40:54,880 CONNECTIONS IN THEIR FIELD IT 6070 04:40:54,880 --> 04:40:59,680 MIGHT NOT THINK ABOUT THE 6071 04:40:59,680 --> 04:41:01,200 NON-PROFIT GRANTERS BUT NOT ONLY 6072 04:41:01,200 --> 04:41:03,640 CAN PEOPLE CONNECT WITH US FOR 6073 04:41:03,640 --> 04:41:04,720 FEEDBACK ON SPECIFIC GAINS WHEN 6074 04:41:04,720 --> 04:41:07,080 THEY'RE APPLYING BUT ALSO WE 6075 04:41:07,080 --> 04:41:08,800 KNOW A LOT OF PEOPLE IN THE FOR 6076 04:41:08,800 --> 04:41:10,560 PROFIT AND OTHER NON PROFITS SO 6077 04:41:10,560 --> 04:41:12,400 WE CAN INTRODUCE YOU TO OTHERS 6078 04:41:12,400 --> 04:41:13,840 OR MAYBE WE MIGHT BE ABLE TO 6079 04:41:13,840 --> 04:41:16,800 TELL YOU, YOU KNOW, HAVE YOU 6080 04:41:16,800 --> 04:41:19,440 CONSIDERED APPLYING TO THIS 6081 04:41:19,440 --> 04:41:21,000 ORGANIZATION SO IT'S A GOOD WAY 6082 04:41:21,000 --> 04:41:24,040 TO TRY AND CONNECT AND I THINK 6083 04:41:24,040 --> 04:41:25,880 THAT THE FINAL THING SO THERE'S 6084 04:41:25,880 --> 04:41:27,440 THE NO HOW AND THE FINANCIAL AND 6085 04:41:27,440 --> 04:41:29,800 THERE'S THE THE 6086 04:41:29,800 --> 04:41:31,320 FOURTH WOULD BE WE HAVE AN 6087 04:41:31,320 --> 04:41:33,400 ALLUMNI NETWORK SO DON'T STOP 6088 04:41:33,400 --> 04:41:35,680 THINKING ABOUT THE NON-PROFIT 6089 04:41:35,680 --> 04:41:39,160 ORGANIZATIONS WHEN THE FUNDING 6090 04:41:39,160 --> 04:41:39,520 ENDS. 6091 04:41:39,520 --> 04:41:44,760 WHEN WE'VE FUNDED YOU, A LOT OF 6092 04:41:44,760 --> 04:41:48,040 TIMES WE'RE YOUR BIGGEST 6093 04:41:48,040 --> 04:41:49,600 CHAMPIONS AND SO WE HAVE THINGS 6094 04:41:49,600 --> 04:41:51,960 AND I THINK THAT THERE ARE SOME 6095 04:41:51,960 --> 04:41:54,440 DOCUMENTS THAT I DID SHARE 6096 04:41:54,440 --> 04:41:57,560 ASPECTASEXAMPLES. 6097 04:41:57,560 --> 04:41:59,320 WE HAVE YEAR BOOKS WITH PEOPLE'S 6098 04:41:59,320 --> 04:42:01,120 MUGSHOTS WITH DESCRIPTIONS AND 6099 04:42:01,120 --> 04:42:02,520 YEAR BOOKS AND ANNUAL REPORTS 6100 04:42:02,520 --> 04:42:06,120 AND RESEARCH AND BRIEF AND WE'LL 6101 04:42:06,120 --> 04:42:08,160 BRING PEOPLE IN FOR TALKS AND 6102 04:42:08,160 --> 04:42:11,760 TALK WITH MAJOR DONORS SO AND 6103 04:42:11,760 --> 04:42:13,840 INTRODUCE YOU TO PEOPLE IN THE 6104 04:42:13,840 --> 04:42:17,480 FIELD SO THERE'S A LOT MORE BUT 6105 04:42:17,480 --> 04:42:19,240 WE SHOULD GET ON TO HAVING 6106 04:42:19,240 --> 04:42:23,320 JENNIFER CHAT AND WE CAN HAVE 6107 04:42:23,320 --> 04:42:23,720 DISCUSSIONS. 6108 04:42:23,720 --> 04:42:26,040 >> GREAT, THANK YOU. 6109 04:42:26,040 --> 04:42:29,240 AND OUR FINAL SPEAKER IS 6110 04:42:29,240 --> 04:42:31,960 JENNIFER BRUMMET. 6111 04:42:31,960 --> 04:42:34,800 SHE GOT HER BACHELORS DISEASE IN 6112 04:42:34,800 --> 04:42:37,720 PSYCHOLOGY AT THE ILLINOIS 6113 04:42:37,720 --> 04:42:41,240 WESLEY ANNE UNIVERSITY. 6114 04:42:41,240 --> 04:42:44,720 HER PH.D IN PSYCHOLOGY AND 6115 04:42:44,720 --> 04:42:47,960 BEHAVIORAL NEUROSCIENCE AT 6116 04:42:47,960 --> 04:42:48,680 MICHIGAN STATE AND WORKED IN 6117 04:42:48,680 --> 04:42:51,400 GOVERNMENT AGENCIES AND 6118 04:42:51,400 --> 04:42:53,400 ORGANIZATIONS AND SOCIETY OF 6119 04:42:53,400 --> 04:42:55,440 NEURAL SCIENCE, NSF, THE 6120 04:42:55,440 --> 04:42:56,720 AMERICAN BAR FOUNDATION AND 6121 04:42:56,720 --> 04:42:59,000 SHE'S CURRENT LEE THE MANAGER 6122 04:42:59,000 --> 04:43:01,320 FOR RESEARCH AT THE AMERICAN EP 6123 04:43:01,320 --> 04:43:08,560 LHEEPILEPSIES SOCIETY. 6124 04:43:08,560 --> 04:43:10,400 >> I'M THE CLEAN UP HITTER HERE 6125 04:43:10,400 --> 04:43:11,960 TODAY SO I'M GOING TO SPEND A 6126 04:43:11,960 --> 04:43:14,120 FEW MINUTES GIVING A HIGH-LEVEL 6127 04:43:14,120 --> 04:43:16,080 OVERVIEW OF HOW THE AMERICAN 6128 04:43:16,080 --> 04:43:17,360 EPILEPSIES SOCIETY WORKS WITH 6129 04:43:17,360 --> 04:43:19,880 EARLY CAREER INVESTIGATORS AND I 6130 04:43:19,880 --> 04:43:21,960 WANT TO USE THE LAST PART OF MY 6131 04:43:21,960 --> 04:43:24,360 TIME TO KIND OF DISCUSS A FEW 6132 04:43:24,360 --> 04:43:25,480 OVERARCHING THEMES AND SOME 6133 04:43:25,480 --> 04:43:27,400 LESSON LEARNED BEFORE WE LAUNCH 6134 04:43:27,400 --> 04:43:29,480 INTO THE Q&A. 6135 04:43:29,480 --> 04:43:31,680 SO FIRST, A QUICK OVERVIEW OF 6136 04:43:31,680 --> 04:43:33,480 THE DIFFERENT WAYS THAT WE WORK 6137 04:43:33,480 --> 04:43:34,920 WITH EARLY CAREER INVESTIGATORS 6138 04:43:34,920 --> 04:43:37,280 AT THE AMERICAN EPILEPSIES 6139 04:43:37,280 --> 04:43:37,480 SOCIETY. 6140 04:43:37,480 --> 04:43:39,120 I WORK WITH SOME OF OUR 6141 04:43:39,120 --> 04:43:41,720 VOLUNTEER COMMITTEES TO SUPPORT 6142 04:43:41,720 --> 04:43:47,960 EARLY KA RO CAREER INVESTIGATORS 6143 04:43:47,960 --> 04:43:49,040 INCLUDING NETWORKING 6144 04:43:49,040 --> 04:43:50,800 OPPORTUNITIES AND WE DO THIS 6145 04:43:50,800 --> 04:43:53,120 THROUGH ON-LINE TRAINING MODULES 6146 04:43:53,120 --> 04:43:55,480 AND WEBINARS, EPILEPSIES, 6147 04:43:55,480 --> 04:43:57,800 SPECIFIC ASSESSMENTS ON-LINE AND 6148 04:43:57,800 --> 04:43:59,200 TARGETED CONTENT FOR EARLY 6149 04:43:59,200 --> 04:44:01,320 CAREER AUDIENCE AND OUR ANNUAL 6150 04:44:01,320 --> 04:44:03,000 SCIENTIFIC CONFERENCE AND 6151 04:44:03,000 --> 04:44:04,400 INCLUDING CAREER PATH WAY 6152 04:44:04,400 --> 04:44:05,520 SESSIONS AND ADDITIONAL 6153 04:44:05,520 --> 04:44:07,480 INFORMATION SESSIONS TO HELP ON 6154 04:44:07,480 --> 04:44:09,840 BOARD THEM TO THE SOCIETY IN OUR 6155 04:44:09,840 --> 04:44:10,080 COMMUNITY. 6156 04:44:10,080 --> 04:44:11,600 ONE OF OUR FLAGSHIP PROGRAMS 6157 04:44:11,600 --> 04:44:13,600 THAT WE OFFER IS CALLED THE 6158 04:44:13,600 --> 04:44:14,920 FELLOWS PROGRAM AND THOSE 6159 04:44:14,920 --> 04:44:16,400 PROGRAMS PROVIDES SUPPORT FOR 6160 04:44:16,400 --> 04:44:18,040 CLINICAL FELLOWS AND POSTDOC TO 6161 04:44:18,040 --> 04:44:19,680 BAL RESEARCH FELLOWS TO ATTEND 6162 04:44:19,680 --> 04:44:22,560 OUR ANNUAL SCIENTIFIC CONFERENCE 6163 04:44:22,560 --> 04:44:24,520 AND DURING THIS PERIOD AT OUR 6164 04:44:24,520 --> 04:44:26,360 MEETING, THEY'LL GET 6165 04:44:26,360 --> 04:44:27,560 PROFESSIONAL DEVELOPMENT CONTENT 6166 04:44:27,560 --> 04:44:29,680 AND THEY GET CONNECTED WITH 6167 04:44:29,680 --> 04:44:31,120 MENTOR SO REALLY THE GOAL THERE 6168 04:44:31,120 --> 04:44:33,600 IS TO PROVIDE THEM THIS 6169 04:44:33,600 --> 04:44:35,360 NETWORKING AND ONBOARDING 6170 04:44:35,360 --> 04:44:38,760 OPPORTUNITY TO OUR COMMUNITY. 6171 04:44:38,760 --> 04:44:41,200 IN ADDITION TO THESE OTHER 6172 04:44:41,200 --> 04:44:42,640 OPPORTUNITIES, WE ALSO PROVIDE 6173 04:44:42,640 --> 04:44:43,920 GRANT FUNDING WHICH EVERYONE 6174 04:44:43,920 --> 04:44:45,960 KNOWS IS CRITICAL FOR EARLY 6175 04:44:45,960 --> 04:44:49,400 CAREER SCIENTISTS AND ABOUT 85% 6176 04:44:49,400 --> 04:44:52,160 OF OUR GRANT FUNDS GO TO EARLY 6177 04:44:52,160 --> 04:44:53,600 CAREER INVESTIGATORS AND 6178 04:44:53,600 --> 04:44:56,960 CLINICIAN SCIENTISTS RANGING 6179 04:44:56,960 --> 04:45:07,480 FROM THE PH.D STAGE 20 THE AND 6180 04:45:14,560 --> 04:45:22,400 OF COURSE OUR GOAL IS TO 6181 04:45:22,400 --> 04:45:25,720 MENTORING AND NETWORKING AND 6182 04:45:25,720 --> 04:45:27,360 OPPORTUNITIES AND WE HAVE ALUMNI 6183 04:45:27,360 --> 04:45:32,800 EVENTS INCLUDING A RECEPTION AT 6184 04:45:32,800 --> 04:45:34,280 OUR CON YOU'LL CONFERENCE AND TO 6185 04:45:34,280 --> 04:45:35,800 HELP CONNECT SOME OF OUR 6186 04:45:35,800 --> 04:45:37,480 GRANTEES WITH OTHER NON-PROFIT 6187 04:45:37,480 --> 04:45:39,360 PARTNERS THAT WE WORK WITH THAT 6188 04:45:39,360 --> 04:45:42,280 MIGHT FOCUS ON VARIOUS 6189 04:45:42,280 --> 04:45:44,000 EPILEPSIESES ARE GENETIC 6190 04:45:44,000 --> 04:45:46,320 EPILEPSIES AND THE NINDS PROGRAM 6191 04:45:46,320 --> 04:45:47,480 OFFICERS AND THAT'S REALLY PART 6192 04:45:47,480 --> 04:45:50,520 OF OUR COMMITMENT TO YOU KNOW, 6193 04:45:50,520 --> 04:45:51,800 WE WITHIN TO FUND THEM AND WE 6194 04:45:51,800 --> 04:45:56,040 WANT THEM TO HAVE GREAT GRAND 6195 04:45:56,040 --> 04:46:02,920 OUTCOMES WHEN SO BECAUSE OF THAT 6196 04:46:02,920 --> 04:46:07,480 GOAL AS WELL WE TROY TO HELP 6197 04:46:07,480 --> 04:46:11,000 TRAINEES AND LAUNCH THE GRA CORE 6198 04:46:11,000 --> 04:46:12,440 AND WE SERVE AS GRANT REVIEWERS 6199 04:46:12,440 --> 04:46:14,320 WHICH HELPS US BUT HOPEFULLY 6200 04:46:14,320 --> 04:46:18,840 ALSO HELPING THEM CONTINUE TO 6201 04:46:18,840 --> 04:46:20,160 DEVELOP THEIR OWN. 6202 04:46:20,160 --> 04:46:24,160 SO I'LL USE THE NEXT THREE 6203 04:46:24,160 --> 04:46:25,680 MINUTES TO TALK ABOUT SOME OF MY 6204 04:46:25,680 --> 04:46:27,200 LESSON LEARNED OVER THE YEARS SO 6205 04:46:27,200 --> 04:46:32,160 I'LL BE INTERESTED TO SEE WHAT 6206 04:46:32,160 --> 04:46:33,960 THE OTHER PANELISTS AND TO 6207 04:46:33,960 --> 04:46:35,760 ENCOURAGE THE NON-PROFIT ON THE 6208 04:46:35,760 --> 04:46:38,320 CALL TO REALLY PUT A LOT OF WORK 6209 04:46:38,320 --> 04:46:40,800 NO IDENTIFYING THE NEEDS OF YOUR 6210 04:46:40,800 --> 04:46:42,440 COMMUNITY AND IT'S REALLY 6211 04:46:42,440 --> 04:46:43,880 IMPORTANT TO UNDERSTAND THEIR 6212 04:46:43,880 --> 04:46:45,840 TRADING ENVIRONMENTS AND CHARGES 6213 04:46:45,840 --> 04:46:48,200 FACE AND CAREER TRAJECTORY AND 6214 04:46:48,200 --> 04:46:50,120 ABOUT WHAT RESOURCES THEY NEED 6215 04:46:50,120 --> 04:46:51,240 TO SUITE AND THIS CHANGES OVER 6216 04:46:51,240 --> 04:46:52,000 TIME, RIGHT. 6217 04:46:52,000 --> 04:46:54,160 SO THIS ISN'T NECESSARY ONE OFF 6218 04:46:54,160 --> 04:46:55,720 TASK AND YOU KNOW THE FUNDING 6219 04:46:55,720 --> 04:46:57,480 NEEDS MIGHT CHANGE OVER TIME. 6220 04:46:57,480 --> 04:46:59,280 AND IN ADDITION TOP 6221 04:46:59,280 --> 04:47:00,920 UNDERSTANDING THE NEEDS OF YOUR 6222 04:47:00,920 --> 04:47:03,920 COMMUNITY, I WOULD ALSO PUT ONE 6223 04:47:03,920 --> 04:47:06,480 POINT OUT THERE WHICH IS TO 6224 04:47:06,480 --> 04:47:08,320 UNDERSTAND WHAT THE EARLY KA 6225 04:47:08,320 --> 04:47:09,640 RAILROAD INVESTIGATORS WOULD 6226 04:47:09,640 --> 04:47:12,800 LOOK TO YOUR ORGANIZATION FOR. 6227 04:47:12,800 --> 04:47:15,880 NONE OF US IS NON PROFITS HAVE 6228 04:47:15,880 --> 04:47:16,920 UNLIMITED CAPACITY OR FUNDS SO 6229 04:47:16,920 --> 04:47:24,040 IT'S JUST REALLY HELPFUL TO MAKE 6230 04:47:24,040 --> 04:47:34,520 SURE ONE EXAMPLE IS WE HAVE TO 6231 04:47:37,920 --> 04:47:45,560 PUT A LOT OF IT WAS WELL ALIGNED 6232 04:47:45,560 --> 04:47:47,680 WITH THE NEEDS OF OUR COMMUNITY 6233 04:47:47,680 --> 04:47:52,000 AND UNDER UTILIZED SO WITH A 6234 04:47:52,000 --> 04:47:55,560 LITTLE BIT DIGGING REAL REALIZED 6235 04:47:55,560 --> 04:47:56,360 WHAT WE WERE OFFERING WAS 6236 04:47:56,360 --> 04:47:58,240 OFFERED BY THE INSTITUTIONS AND 6237 04:47:58,240 --> 04:48:00,200 SO WHAT T ALLOWED US TO TAKE A 6238 04:48:00,200 --> 04:48:02,080 STEP BACK AND WORK TO REFINE OUR 6239 04:48:02,080 --> 04:48:04,040 PROGRAM IN A WAY THAT REALLY 6240 04:48:04,040 --> 04:48:06,320 HONED IN ON OR ORGANIZATION 6241 04:48:06,320 --> 04:48:08,120 UNIQUE EX PER HE'S AND REALLY 6242 04:48:08,120 --> 04:48:09,720 HELPED GET THOSE RESOURCES OUT 6243 04:48:09,720 --> 04:48:13,560 THERE TO OUR EARLY CAREER 6244 04:48:13,560 --> 04:48:13,880 INVESTIGATORS. 6245 04:48:13,880 --> 04:48:15,560 AND THE SECOND BIG LESSON IS TO 6246 04:48:15,560 --> 04:48:17,080 IDENTIFY WAYS TO MAKE WORKING 6247 04:48:17,080 --> 04:48:19,440 WITH EARLY CAREER INVESTIGATORS 6248 04:48:19,440 --> 04:48:21,000 MUTUALLY BENEFICIAL AND IT 6249 04:48:21,000 --> 04:48:22,400 DOESN'T NEED TO BE EQUALLY 6250 04:48:22,400 --> 04:48:24,520 BENEFICIAL BUT I THINK THE BEST 6251 04:48:24,520 --> 04:48:25,520 RELATIONSHIP TEND TO BRING 6252 04:48:25,520 --> 04:48:27,400 SOMETHING OF BENEFIT TO BOTH 6253 04:48:27,400 --> 04:48:29,280 SIDES AND SO EVEN A GRANT 6254 04:48:29,280 --> 04:48:31,640 PROGRAM CAN BE BENEFICIAL RIGHT 6255 04:48:31,640 --> 04:48:35,960 AND OBVIOUSLY EARLY CAREER 6256 04:48:35,960 --> 04:48:40,760 INVESTIGATORS AND HOCH YOU CAN 6257 04:48:40,760 --> 04:48:42,600 TORCHBEARER TO PULL IN YOUR PAST 6258 04:48:42,600 --> 04:48:44,160 GRANT TEES AS A VOLUNTEER FOR 6259 04:48:44,160 --> 04:48:46,160 OTHER PROGRAMS OR A GRANT 6260 04:48:46,160 --> 04:48:47,840 REVIEWERS AND OR BUILD AN 6261 04:48:47,840 --> 04:48:48,960 ONGOING COMMUNITY AND PEOPLE 6262 04:48:48,960 --> 04:48:50,720 WORKING ON A SPECIFIC DISEASE 6263 04:48:50,720 --> 04:49:01,240 AREA OR REALLY ANYTHING OF THEY 6264 04:49:06,960 --> 04:49:09,280 HAVE HAD A LOT OF CHANG HES 6265 04:49:09,280 --> 04:49:16,120 FUNDING AND RESEARCH AND THE SO 6266 04:49:16,120 --> 04:49:17,920 IN MY OPINION THE POSITIVE SPIN 6267 04:49:17,920 --> 04:49:19,920 ON THIS IS THERE'S A LOT OF 6268 04:49:19,920 --> 04:49:21,960 FUNDS ARE NOT PROFIT TO STEP IN 6269 04:49:21,960 --> 04:49:24,440 AND IDENTIFY SOME EMERGING NEEDS 6270 04:49:24,440 --> 04:49:25,840 AND OPPORTUNITIES TO WORK WITH 6271 04:49:25,840 --> 04:49:28,200 TRAINEES WHETHER IT'S FUNDING 6272 04:49:28,200 --> 04:49:30,320 PROGRAMS AND OR PROVIDING OTHER 6273 04:49:30,320 --> 04:49:31,760 RESEARCHES AND SO I WILL END 6274 04:49:31,760 --> 04:49:35,920 THERE AND I LOOK FORWARD TO THE 6275 04:49:35,920 --> 04:49:37,920 Q&A. 6276 04:49:37,920 --> 04:49:40,480 >> THANK YOU. 6277 04:49:40,480 --> 04:49:43,480 SO, THIS IS YOUR TIME, YOU ARE 6278 04:49:43,480 --> 04:49:47,040 AUDIENCE TO ASK US ANYTHING YOU 6279 04:49:47,040 --> 04:49:49,000 WANT AND TO PERHAPS SUGGESTING 6280 04:49:49,000 --> 04:49:52,440 THINGS THAT YOU WOULD LIKE TO 6281 04:49:52,440 --> 04:49:53,760 HEAR DISCUSSION ABOUT. 6282 04:49:53,760 --> 04:49:57,360 I'M HAPPY TO GET THINGS STARTED 6283 04:49:57,360 --> 04:49:59,600 BECAUSE AS I HEARD EACH OF THE 6284 04:49:59,600 --> 04:50:02,880 TALKS THE THING THAT STRUCK ME 6285 04:50:02,880 --> 04:50:04,520 THE MOST, AND I SUSPECT THIS 6286 04:50:04,520 --> 04:50:09,160 WILL COME AS NO SURPRISE AND IT 6287 04:50:09,160 --> 04:50:11,680 IS INTERESTING TO ME THAN A 6288 04:50:11,680 --> 04:50:14,800 NON-PROFIT ORGANIZATION CAN PLAY 6289 04:50:14,800 --> 04:50:16,200 MANY, MANY DIFFERENT ROLES EVEN 6290 04:50:16,200 --> 04:50:19,280 IN THE SPACE OF FUNDING EARLIER 6291 04:50:19,280 --> 04:50:23,240 MID CAREER INVESTIGATORS AND IT 6292 04:50:23,240 --> 04:50:29,760 SEEMS LIKE SOMETIMES YOU ARE 6293 04:50:29,760 --> 04:50:33,760 ACTUALLY FUELING THEIR ABILITY 6294 04:50:33,760 --> 04:50:37,400 TO CARRY OUT A BUNCH OF STUDIES 6295 04:50:37,400 --> 04:50:43,520 AND THEY PERHAPS WANT TO DO TRY 6296 04:50:43,520 --> 04:50:45,240 SO YOU GET THEM OFF THE GROUND 6297 04:50:45,240 --> 04:50:47,120 AND KEEP THEM ENGAGE IN WHAT IT 6298 04:50:47,120 --> 04:50:50,880 IS YOU ARE SOCIETY IS DEDICATING 6299 04:50:50,880 --> 04:50:53,760 TO DOING AND I THINK SOMETIMES 6300 04:50:53,760 --> 04:50:59,440 ALSO YOU HAVE THE OPPORTUNITY TO 6301 04:50:59,440 --> 04:51:01,000 DIRECT WHERE THE FIELD AND 6302 04:51:01,000 --> 04:51:02,800 MAKING FUNDING OPPORTUNITIES 6303 04:51:02,800 --> 04:51:04,760 AVAILABLE THAT ARE TARGETED IN 6304 04:51:04,760 --> 04:51:07,400 SOME WAY OR THAT RESPONDED TO 6305 04:51:07,400 --> 04:51:10,560 SOME NEED OF YOUR PATIENT 6306 04:51:10,560 --> 04:51:11,960 POPULATION AND FAMILIES OR OF 6307 04:51:11,960 --> 04:51:17,040 YOUR ORGANIZATIONS SO IF I'M THE 6308 04:51:17,040 --> 04:51:21,480 DIRECTOR OF A NON-PROFIT THAT 6309 04:51:21,480 --> 04:51:23,960 HAS JUST MOVED INTO THE 6310 04:51:23,960 --> 04:51:27,080 FINANCIAL SITUATIONS WHERE WE 6311 04:51:27,080 --> 04:51:31,120 CAN THINK ABOUT FUNDING YOUNG 6312 04:51:31,120 --> 04:51:33,640 INVESTIGATORS LET'S SAY WERE IN 6313 04:51:33,640 --> 04:51:36,160 THAT SPECTRUM SHOULD I THINK 6314 04:51:36,160 --> 04:51:36,760 ABOUT BEING? 6315 04:51:36,760 --> 04:51:39,160 DO I PUT OUT SOMETHING VERY 6316 04:51:39,160 --> 04:51:41,840 TARGETED THAT I KNOW IS EXACTLY 6317 04:51:41,840 --> 04:51:44,200 WHAT OUR PATIENTS NEED IN THE 6318 04:51:44,200 --> 04:51:46,520 NEAR TERM OR DO I PUT OUT 6319 04:51:46,520 --> 04:51:49,440 SOMETHING THAT WILL HELP ME 6320 04:51:49,440 --> 04:51:52,400 INVEST IN THE LONG-TERM FOR THE 6321 04:51:52,400 --> 04:51:54,080 CAREER OF SOMEONE WHO IS JUST 6322 04:51:54,080 --> 04:51:58,800 GETTING STARTED. 6323 04:51:58,800 --> 04:52:00,280 >> I PUT MY HAND UP HERE. 6324 04:52:00,280 --> 04:52:06,920 IF I YOU MAY, I THINK ALL OF THE 6325 04:52:06,920 --> 04:52:11,600 ABOVE IF WE CONSIDER FINANCE AND 6326 04:52:11,600 --> 04:52:13,080 ALL OF THE NON FINANCIAL SUPPORT 6327 04:52:13,080 --> 04:52:15,360 THAT YOU CAN DO AND IF I LIKE IT 6328 04:52:15,360 --> 04:52:18,000 IT TO ICE CREAM, MANY DIFFERENT 6329 04:52:18,000 --> 04:52:19,760 FLAVORS OF ICE CREAM COME FROM 6330 04:52:19,760 --> 04:52:21,440 MANY DIFFERENT ORGANIZATIONS AND 6331 04:52:21,440 --> 04:52:25,720 ICE CREAM IS STILL DELICIOUS SO 6332 04:52:25,720 --> 04:52:32,160 SO ONE OF THE EXAMPLE ARE WE 6333 04:52:32,160 --> 04:52:33,520 HAVE A SMALL PERCENTAGE OF OUR 6334 04:52:33,520 --> 04:52:44,080 PORT GOAL THAT GETS DIRECTED BUT 6335 04:52:44,400 --> 04:52:48,280 I THINK THAT ONE OF THE THINGS 6336 04:52:48,280 --> 04:52:56,640 WE DO SO OVER THE LAST COUPLE OF 6337 04:52:56,640 --> 04:53:05,720 YEARS WE'VE HAD YOU KNOW JUST TO 6338 04:53:05,720 --> 04:53:07,400 MAKE SURE WE HELP TO SUPPORT 6339 04:53:07,400 --> 04:53:08,800 EVERYTHING AND WE LET THEM 6340 04:53:08,800 --> 04:53:11,760 DECIDE WHICH ARE THE MOST, THE 6341 04:53:11,760 --> 04:53:13,400 HIGHEST REACHING ABSTRACT AND 6342 04:53:13,400 --> 04:53:15,920 ALSO I WANTED TO ADDRESS WHAT 6343 04:53:15,920 --> 04:53:17,080 JENNIFER WAS SAYING ABOUT THE 6344 04:53:17,080 --> 04:53:21,560 COVID I THINK THAT A LOT OF OUR 6345 04:53:21,560 --> 04:53:26,440 ORGANIZATIONS HAVE BEEN HELPING 6346 04:53:26,440 --> 04:53:29,640 RESEARCHERS AND WE'VE GIVEN OUT 6347 04:53:29,640 --> 04:53:34,640 WHEN POEM COME HAVE TO DIRE NEED 6348 04:53:34,640 --> 04:53:36,280 AND WE'VE ALSO ALLOWED 6349 04:53:36,280 --> 04:53:37,360 REBUDGETING SO THERE'S A LOT OF 6350 04:53:37,360 --> 04:53:40,840 THINGS THAT WE CAN DO AND THE 6351 04:53:40,840 --> 04:53:42,920 ADD VOICE TO THE SCIENTISTS ARE 6352 04:53:42,920 --> 04:53:44,880 YOU CAN'T GET IT IF YOU DO ASK 6353 04:53:44,880 --> 04:53:47,560 SO KEEP IN CONTACT WITH YOUR 6354 04:53:47,560 --> 04:53:53,560 NON-PROFIT GRANT ADMINISTRATOR 6355 04:53:53,560 --> 04:53:54,920 AND ANYBODY ELSE WANT TO ANSWER 6356 04:53:54,920 --> 04:53:55,480 IN HERE? 6357 04:53:55,480 --> 04:53:56,640 I JUST SAID EVERYTHING. 6358 04:53:56,640 --> 04:53:59,120 ALL OF THE ABOVE AND ALL FLAVORS 6359 04:53:59,120 --> 04:54:00,520 OF ICE CREAM ARE DELICIOUS. 6360 04:54:00,520 --> 04:54:05,440 >> ONE THING I WOULD SAY IS IT 6361 04:54:05,440 --> 04:54:08,880 WAS SOMETHING THAT WAS MENTIONED 6362 04:54:08,880 --> 04:54:12,120 OFF HAND AND ONE OF THE EARLIER 6363 04:54:12,120 --> 04:54:15,760 SPEAKERS IN THE DAY AND IT'S 6364 04:54:15,760 --> 04:54:20,280 JUST IF YOU START A DISEASE THAT 6365 04:54:20,280 --> 04:54:22,760 YOUR KID HAS AND SOMEONE I THINK 6366 04:54:22,760 --> 04:54:23,880 JUST MENTIONED A FEW MINUTES 6367 04:54:23,880 --> 04:54:25,160 AGO, YOU START WORKING WITH 6368 04:54:25,160 --> 04:54:27,040 OTHER PEOPLE ON Facebook AND 6369 04:54:27,040 --> 04:54:28,640 RAISING MONEY AND THAT CAN BE 6370 04:54:28,640 --> 04:54:31,600 THE THING THAT BRINGS AWARENESS 6371 04:54:31,600 --> 04:54:35,760 FOR SCIENTISTS AND RESEARCH AND 6372 04:54:35,760 --> 04:54:37,800 I MEAN Dr. MORROW KNOWS THIS 6373 04:54:37,800 --> 04:54:39,240 BUT THERE'S A LOT OF MEDICINE 6374 04:54:39,240 --> 04:54:40,640 OUT THERE SO LIKE EVEN IF YOU 6375 04:54:40,640 --> 04:54:43,560 WANTED TO JUST DO NEUROSCIENCE, 6376 04:54:43,560 --> 04:54:47,200 IT'S HARD TO GUARANTEE THAT YOUR 6377 04:54:47,200 --> 04:54:50,120 DISEASES OF TAUGHT AND LIKE THE 6378 04:54:50,120 --> 04:54:51,520 OVERVIEWS AND OF NEUROSCIENCE 6379 04:54:51,520 --> 04:54:53,800 FOR MEDICAL STUDENTS AND 6380 04:54:53,800 --> 04:54:55,600 GRADUATE STUDENTS SO WHAT PEOPLE 6381 04:54:55,600 --> 04:54:57,160 ACTUALLY END UP DOING AND IN 6382 04:54:57,160 --> 04:54:59,160 TERMS OF THE RESEARCH CAREER CAN 6383 04:54:59,160 --> 04:55:01,360 BE ALMOST LIKE A RANDOM WALK 6384 04:55:01,360 --> 04:55:03,240 LIKE SOME PEOPLE MIGHT JUST END 6385 04:55:03,240 --> 04:55:07,280 UP WORKING ON RED SYNDROME 6386 04:55:07,280 --> 04:55:08,440 BECAUSE YOU KNOW, OTHER PEOPLE 6387 04:55:08,440 --> 04:55:10,920 WERE WORKING ON IT BUT IF YOU 6388 04:55:10,920 --> 04:55:13,520 HAVE A RARE DISEASE AND YOU WANT 6389 04:55:13,520 --> 04:55:17,160 TO BE FUNDED, IF YOU ARE ABLE TO 6390 04:55:17,160 --> 04:55:19,080 SEE START GOING TO CONFERENCES 6391 04:55:19,080 --> 04:55:24,320 LIKE AAS BECAUSE THAT IS A TERM 6392 04:55:24,320 --> 04:55:26,520 EPILEPSIES IS AND YOU CAN GET 6393 04:55:26,520 --> 04:55:28,320 PEOPLE'S ATTENTION AND PEOPLE 6394 04:55:28,320 --> 04:55:30,080 ARE WORKING IN IT AND YOU HAVE 6395 04:55:30,080 --> 04:55:37,360 THAT MONEY THAT CAN BE AND THERE 6396 04:55:37,360 --> 04:55:39,040 WILL BE DOING AT LEAST EARLY 6397 04:55:39,040 --> 04:55:41,360 STAGE IF NOT LATER STAGE 6398 04:55:41,360 --> 04:55:47,280 RESEARCH ON THE DISEASE AND THEY 6399 04:55:47,280 --> 04:55:51,800 FILE AWARE THE MONEY IS SO IF 6400 04:55:51,800 --> 04:55:52,720 THAT MEANS THAT THEY END UP 6401 04:55:52,720 --> 04:55:55,360 TURNING THEIR GENETIC KNOWLEDGE 6402 04:55:55,360 --> 04:55:56,360 TO THIS KIND OF RARE DISEASE AND 6403 04:55:56,360 --> 04:56:01,600 AS LONG AS SOMEONE IS GOT LIKE A 6404 04:56:01,600 --> 04:56:03,160 PASSIONATE COMMITMENT TO THE 6405 04:56:03,160 --> 04:56:05,400 PATIENTS OF THAT DISEASE AND 6406 04:56:05,400 --> 04:56:07,280 PEOPLE WILL ACTUALLY START TO DO 6407 04:56:07,280 --> 04:56:09,680 THAT RESEARCH. 6408 04:56:09,680 --> 04:56:11,920 >> WE HAVE A MINUTE LEFT BUT 6409 04:56:11,920 --> 04:56:14,400 THERE'S A QUESTION I WANT TO 6410 04:56:14,400 --> 04:56:17,560 POSE THAT PENNY DACKS PUT IN THE 6411 04:56:17,560 --> 04:56:17,840 CHAT. 6412 04:56:17,840 --> 04:56:20,160 HOW CAN A NON-PROFIT MEASURE 6413 04:56:20,160 --> 04:56:22,280 SUCCESS IN ITS INVESTMENTS AND 6414 04:56:22,280 --> 04:56:24,640 EARLY CAREER AND IF A FUNDED 6415 04:56:24,640 --> 04:56:27,240 TRAINEE LEAVES ACADEMICS 6416 04:56:27,240 --> 04:56:31,840 RESEARCH A SUCCESS OR A FAILURE? 6417 04:56:31,840 --> 04:56:34,760 >> JENNIFER OR ERIC, DO YOU WANT 6418 04:56:34,760 --> 04:56:35,400 TO ANSWER? 6419 04:56:35,400 --> 04:56:37,880 >> I CAN GIVE MY THOUGHTS AND 6420 04:56:37,880 --> 04:56:39,280 IT'S NOT NEARLY MUFF FOR THIS 6421 04:56:39,280 --> 04:56:40,800 LOAD OF OF A QUESTION BUT IT'S 6422 04:56:40,800 --> 04:56:45,360 SUCH AN IMPORTANT ONE AND THE 6423 04:56:45,360 --> 04:56:47,760 SHORT ANSWER I GIVE IT REALLY 6424 04:56:47,760 --> 04:56:48,840 DEPENDS ON YOUR MISSION AND YOUR 6425 04:56:48,840 --> 04:56:50,680 GOAL IS AND FOR AN ORGANIZATION 6426 04:56:50,680 --> 04:56:52,360 LIKE MINE, OUR GOALS REALLY TO 6427 04:56:52,360 --> 04:56:53,520 FURTHER RESEARCH AND TO TREAT 6428 04:56:53,520 --> 04:56:56,320 AND CARE EPILEPSIES SO FOR US, 6429 04:56:56,320 --> 04:56:57,640 THAT CAN HELP IN A LOT OF 6430 04:56:57,640 --> 04:56:59,640 DIFFERENT VENUES, RIGHT, THEY'RE 6431 04:56:59,640 --> 04:57:01,120 NON PROFITS DOING THAT AND 6432 04:57:01,120 --> 04:57:02,640 THEY'RE INDUSTRY COMPANIES DOING 6433 04:57:02,640 --> 04:57:05,480 THAT AND CERTAINLY ACADEMIC 6434 04:57:05,480 --> 04:57:16,000 RESEARCH IS IF THAT COULD HAPPEN 6435 04:57:16,600 --> 04:57:21,280 IN TERMS OF HOW IT IMPACTS OUR 6436 04:57:21,280 --> 04:57:21,520 MISSION. 6437 04:57:21,520 --> 04:57:23,800 >> ERIC? 6438 04:57:23,800 --> 04:57:25,040 >> I DON'T KNOW THAT I HAVE MORE 6439 04:57:25,040 --> 04:57:25,880 TO SAY. 6440 04:57:25,880 --> 04:57:28,880 I THINK THAT WAS A GOOD 6441 04:57:28,880 --> 04:57:32,640 DISCUSSION OF THAT SO MEASURING 6442 04:57:32,640 --> 04:57:36,840 OUTCOMES AND I CAN'T SPEAK TO -- 6443 04:57:36,840 --> 04:57:38,920 PEOPLE THE PEOPLE FROM THE 6444 04:57:38,920 --> 04:57:40,960 NON-PROFIT AND LIKE JENNIFER AND 6445 04:57:40,960 --> 04:57:45,840 DIANNE SHOULD SPEAK T TO THAT. 6446 04:57:45,840 --> 04:57:49,640 NATURALLY THERE ARE STANDARD 6447 04:57:49,640 --> 04:57:52,000 MEASURES AND OF ULTIMATELY TO 6448 04:57:52,000 --> 04:57:54,280 DEPENDS ON WHAT THE GOALS ARE 6449 04:57:54,280 --> 04:57:57,880 AND TREATMENTS AND GETTING 6450 04:57:57,880 --> 04:58:01,880 RAISING AWARENESS AND 6451 04:58:01,880 --> 04:58:02,600 INFORMATION AND AS WELL AS 6452 04:58:02,600 --> 04:58:08,920 PAPERS AND FUNDING AND IF I CAN 6453 04:58:08,920 --> 04:58:11,400 SPEAK TO GENERALLY I DON'T THINK 6454 04:58:11,400 --> 04:58:13,760 IT'S A FAILURE IF SOMEONE LEAVES 6455 04:58:13,760 --> 04:58:15,320 ACADEMIC RESEARCH BECAUSE THERE 6456 04:58:15,320 --> 04:58:19,840 ARE IMPORTANT THINGS TO GO TO 6457 04:58:19,840 --> 04:58:21,480 AND MANY IMPORTANT THINGS TO GO 6458 04:58:21,480 --> 04:58:32,000 TO SO IT DEPENDS -- OR TO SAD 6459 04:58:38,480 --> 04:58:42,520 ROW KA SEE AND POLICY AND WE ARE 6460 04:58:42,520 --> 04:58:48,160 SEEING MORE PEOPLE COME BACK AND 6461 04:58:48,160 --> 04:58:50,640 HAVE A BLEND EXISTENCE AND SO 6462 04:58:50,640 --> 04:58:52,920 WITH THOSE FIELDS SO I THINK IT 6463 04:58:52,920 --> 04:58:54,560 SPEAKS TO DO THEY MAINTAIN THE 6464 04:58:54,560 --> 04:58:57,360 FIRE AND THE INSPIRATION AND THE 6465 04:58:57,360 --> 04:58:59,400 FIGHT TOWARDS THE GOALS AND ONE 6466 04:58:59,400 --> 04:59:03,440 OF THE THINGS THAT I WOULD JUST 6467 04:59:03,440 --> 04:59:05,080 LIKE TO PICK UP IS THE ISSUE OF 6468 04:59:05,080 --> 04:59:08,880 COVID SINCE I DO THINK THAT IS A 6469 04:59:08,880 --> 04:59:11,920 SESSION ON TRAINEES AND EARLY 6470 04:59:11,920 --> 04:59:14,400 CAREER AND I WAS JUST HAD TWO 6471 04:59:14,400 --> 04:59:18,640 CONVERSATIONS THIS MORNING ONE 6472 04:59:18,640 --> 04:59:20,000 WITH THE JUNIOR FACULTY TRYING 6473 04:59:20,000 --> 04:59:22,840 TO GET HIS FIRST GRANT AND HOW 6474 04:59:22,840 --> 04:59:24,320 THE COLLECTION OF THE 6475 04:59:24,320 --> 04:59:26,040 PRELIMINARY DATA HAS BEEN 6476 04:59:26,040 --> 04:59:30,800 INTERRUPTED REPEATEDLY BY COVID 6477 04:59:30,800 --> 04:59:32,840 AND DIFFERENT WAYS MORE ADVANCED 6478 04:59:32,840 --> 04:59:34,400 FACULTY MEMBERS WHO SHE'S 6479 04:59:34,400 --> 04:59:37,480 THINKING ABOUT PROMOTION AND YOU 6480 04:59:37,480 --> 04:59:42,400 KNOW AND HOW IT'S BEEN HARDER TO 6481 04:59:42,400 --> 04:59:46,280 MAKE WITH POEM OUTSIDE ARE 6482 04:59:46,280 --> 04:59:48,080 INSTITUTE AND VIRTUAL MEETINGS 6483 04:59:48,080 --> 04:59:50,640 ARE GREAT AND ZOOM IS HELPFUL IN 6484 04:59:50,640 --> 04:59:52,400 MANY WAYS BUT IT'S NOT 6485 04:59:52,400 --> 04:59:56,280 CONNECTING IN-PERSON WITH PEOPLE 6486 04:59:56,280 --> 05:00:00,880 AND SO MY FINAL COMMENT IS I 6487 05:00:00,880 --> 05:00:02,200 LIKED THAT 'EM THINKING HARD 6488 05:00:02,200 --> 05:00:06,600 ABOUT HOW WE ALL CAN SUPPORT 6489 05:00:06,600 --> 05:00:08,000 THOSE PEOPLE WHOSE CAREERS ARE 6490 05:00:08,000 --> 05:00:12,400 MOST VULNERABLE BY THE PANDEMIC. 6491 05:00:12,400 --> 05:00:15,120 >> IT CAN ADD WHAT ERIC AND 6492 05:00:15,120 --> 05:00:17,040 JENNIFER SAID SO TO ANSWER THE 6493 05:00:17,040 --> 05:00:20,400 SECOND QUESTION, SO IT DOESN'T 6494 05:00:20,400 --> 05:00:22,520 MATTER FOR US, JUST LOOK AT NON 6495 05:00:22,520 --> 05:00:24,120 PROFITS BECAUSE WE ALLOW A P.I. 6496 05:00:24,120 --> 05:00:28,160 TO BE FROM ACADEMIA OR 6497 05:00:28,160 --> 05:00:29,720 INTRAMURAL GOVERNMENT OK SO TAKE 6498 05:00:29,720 --> 05:00:33,120 A LOOK AT INSTITUTIONS AND LOOK 6499 05:00:33,120 --> 05:00:34,400 AT THAT. 6500 05:00:34,400 --> 05:00:35,800 >> RIGHT. 6501 05:00:35,800 --> 05:00:38,400 NIH TAKES EXACTLY THE SAME 6502 05:00:38,400 --> 05:00:42,520 VIEWPOINT THAT IN FACT IT IS OUR 6503 05:00:42,520 --> 05:00:44,320 JOB TO KEEP SCIENCE HAPPENING 6504 05:00:44,320 --> 05:00:47,520 AND TO KEEP EXCELLENCE AS ROBUST 6505 05:00:47,520 --> 05:00:54,080 AS IT CAN BE AND WE'VE MADE MANY 6506 05:00:54,080 --> 05:00:55,960 NEW MECHANISMS AND VARIATIONS ON 6507 05:00:55,960 --> 05:01:00,960 OLD MECHANISMS TO ADAPT TO THE 6508 05:01:00,960 --> 05:01:02,280 CIRCUMSTANCES FROM WHICH NONE OF 6509 05:01:02,280 --> 05:01:04,680 US CAN HIDE AT THIS POINT. 6510 05:01:04,680 --> 05:01:07,160 >> REFER BACK TO PENNY'S 6511 05:01:07,160 --> 05:01:07,400 SESSION. 6512 05:01:07,400 --> 05:01:11,360 IT'S A PUZZLE. 6513 05:01:11,360 --> 05:01:13,360 A JIG SA PUZZLE. 6514 05:01:13,360 --> 05:01:15,240 >> MANY. 6515 05:01:15,240 --> 05:01:17,960 MANY THANKS BOTH TO THE SPEAKERS 6516 05:01:17,960 --> 05:01:20,680 FOR THIS SESSION AND TO OUR 6517 05:01:20,680 --> 05:01:22,880 AUDIENCE AND I'M GOING TO TURN 6518 05:01:22,880 --> 05:01:26,320 THE THERE WERE OVER TO Dr. 6519 05:01:26,320 --> 05:01:26,600 KOROSHETZ. 6520 05:01:26,600 --> 05:01:29,280 >> THANK YOU VERY MUCH, NINA AND 6521 05:01:29,280 --> 05:01:32,360 THANK YOU SO MUCH ERIC AND 6522 05:01:32,360 --> 05:01:36,720 JENNIFER, DAN AND DIANNE. 6523 05:01:36,720 --> 05:01:37,160 GREAT SESSION. 6524 05:01:37,160 --> 05:01:42,600 I THINK JUST A COUPLE OF 6525 05:01:42,600 --> 05:01:43,920 REFLECTIONS FROM THE DAY. 6526 05:01:43,920 --> 05:01:45,480 THE ONE THING WE SHOULD ALL 6527 05:01:45,480 --> 05:01:47,120 TAKEAWAY IS THERE'S A LOT OF 6528 05:01:47,120 --> 05:01:53,400 REALLY GOOD POEM IN THIS SPACE 6529 05:01:53,400 --> 05:01:56,160 AND A LOT OF ENERGY IN THIS 6530 05:01:56,160 --> 05:01:59,880 VIRTUAL ZOOM ROOM AND I WOULD 6531 05:01:59,880 --> 05:02:03,280 SAY THAT WITH REGARD TO THE 6532 05:02:03,280 --> 05:02:03,840 TRAINING, DON'T UNDERSTAND 6533 05:02:03,840 --> 05:02:07,280 ESTIMATE THE POWER OF THE 6534 05:02:07,280 --> 05:02:08,920 CONTAGION OF THIS ENERGY WHEN 6535 05:02:08,920 --> 05:02:11,000 PEOPLE ARE LOOKING TO A KA ROAR 6536 05:02:11,000 --> 05:02:18,000 CAREERAND MAKING A DIFFERENCE IE 6537 05:02:18,000 --> 05:02:20,600 WORLD AND LOOKING HAT A DISEASE. 6538 05:02:20,600 --> 05:02:22,520 THERE'S NOT MUCH MORE THAT IS 6539 05:02:22,520 --> 05:02:28,640 MORE REWARDING THAN THAT AND SO 6540 05:02:28,640 --> 05:02:30,520 THAT DIMENSION IN THE OPENING 6541 05:02:30,520 --> 05:02:33,680 REMARKS, THAT COMES FROM THE 6542 05:02:33,680 --> 05:02:35,120 DISEASE ORGANIZATIONS AND NOT 6543 05:02:35,120 --> 05:02:37,560 USUALLY FROM THE GOVERNMENT SO 6544 05:02:37,560 --> 05:02:43,400 YOU HAVE A LOT OF POWER IN 6545 05:02:43,400 --> 05:02:44,880 MORPHING THE FUTURE BY 6546 05:02:44,880 --> 05:02:48,120 INFLUENCING PEOPLE. 6547 05:02:48,120 --> 05:02:51,320 I THINK AFTER THE KIND OF PIE IN 6548 05:02:51,320 --> 05:02:53,400 THE SKY, I THINK WE GOT SOME 6549 05:02:53,400 --> 05:02:55,240 HEAVY DOSES OF REALITY 6550 05:02:55,240 --> 05:02:56,400 THROUGHOUT THE DAY AS PEOPLE 6551 05:02:56,400 --> 05:02:57,960 TALK ABOUT THE DIFFERENT 6552 05:02:57,960 --> 05:03:00,440 PATHWAYS AND THE NEED FOR 6553 05:03:00,440 --> 05:03:01,880 PERSISTENCE AND TO KIND OF 6554 05:03:01,880 --> 05:03:06,160 CONVERT THAT ENERGY AND PASSION 6555 05:03:06,160 --> 05:03:08,080 TO ACTUAL GETTING PAST THE GOAL 6556 05:03:08,080 --> 05:03:09,400 LINE WHICH IS DEVELOPING 6557 05:03:09,400 --> 05:03:11,400 TREATMENTS FOR PEOPLE. 6558 05:03:11,400 --> 05:03:13,440 LOTS OF DIFFERENT THINGS ARE 6559 05:03:13,440 --> 05:03:15,480 NECESSARY AND IT'S ALL ABOUT THE 6560 05:03:15,480 --> 05:03:18,400 PATIENTS IN THE END SO THE 6561 05:03:18,400 --> 05:03:23,320 DISEASE ORGANIZATIONS THAT ARE 6562 05:03:23,320 --> 05:03:24,720 IN TOUCH WITH THE PATIENTS WITH 6563 05:03:24,720 --> 05:03:27,640 THE DISEASES HAVE INCREDIBLE 6564 05:03:27,640 --> 05:03:30,840 VALUE AND THE PROCESS OF MOVING 6565 05:03:30,840 --> 05:03:32,840 TREATMENTS FORWARD, ESPECIALLY 6566 05:03:32,840 --> 05:03:34,280 WHEN IT COMES TO CLINICAL 6567 05:03:34,280 --> 05:03:35,200 TRIALS, THAT'S REALLY WHERE 6568 05:03:35,200 --> 05:03:37,480 THINGS HAPPEN AND I THINK WE'VE 6569 05:03:37,480 --> 05:03:39,960 HEARD THAT FROM THE 6570 05:03:39,960 --> 05:03:42,760 HYDROCEPHALUS TALK AND THE JONAS 6571 05:03:42,760 --> 05:03:44,960 FOUNDATION AND THEIR ABILITY TO 6572 05:03:44,960 --> 05:03:46,520 MOVE THEIR ENROLLMENT TO WHERE 6573 05:03:46,520 --> 05:03:49,240 IT NEEDED TO BE AND IT'S TRUE 6574 05:03:49,240 --> 05:03:52,880 ABOUT SO MANY DIFFERENT 6575 05:03:52,880 --> 05:03:53,920 SPECIFICALLY THE MORE LESS 6576 05:03:53,920 --> 05:03:56,840 COMMON DISEASES. 6577 05:03:56,840 --> 05:04:01,000 WE HEARD A LOT ABOUT THE 6578 05:04:01,000 --> 05:04:03,640 FOUNDATION FOR NIH WHICH IS SET 6579 05:04:03,640 --> 05:04:08,880 UP BY CONGRESS TO DEVELOP THESE 6580 05:04:08,880 --> 05:04:10,520 KIND OF PARTNERSHIPS. 6581 05:04:10,520 --> 05:04:14,640 THEY KEEP THE GOVERNMENT PEOPLE 6582 05:04:14,640 --> 05:04:21,360 IN THEIR SWIM LANES SO THEY 6583 05:04:21,360 --> 05:04:23,800 DON'T END UP IN JAIL AND THINK 6584 05:04:23,800 --> 05:04:26,560 MANAGEMENT AND DEVELOPING 6585 05:04:26,560 --> 05:04:27,560 PARTNERSHIPS WITHIN THE LEGAL 6586 05:04:27,560 --> 05:04:28,600 FRAMEWORK THAT THE GOVERNMENT 6587 05:04:28,600 --> 05:04:33,040 FOLKS CAN WORK IN AND WE HEARD 6588 05:04:33,040 --> 05:04:36,480 ABOUT THE BUSINESS OF DEVELOPING 6589 05:04:36,480 --> 05:04:37,800 TREATMENTS AND THE PROGRAMS MA 6590 05:04:37,800 --> 05:04:45,160 WE HAVE HERE IN NIH WHICH FUND 6591 05:04:45,160 --> 05:04:46,240 WHETHER THEY'RE TRYING TO 6592 05:04:46,240 --> 05:04:47,160 DEVELOP TREATMENT AND 6593 05:04:47,160 --> 05:04:47,960 PARTICULARLY THE SMALL 6594 05:04:47,960 --> 05:04:50,480 BUSINESSES ARE OFTEN TIMES 6595 05:04:50,480 --> 05:04:54,280 THEY'RE SWIM LANE IS THE RARE 6596 05:04:54,280 --> 05:04:58,040 DISEASES AND THERE'S REAL 6597 05:04:58,040 --> 05:04:59,240 IMPORTANT LEGAL AND MANAGEMENT 6598 05:04:59,240 --> 05:05:03,440 FRAMEWORKS THAT YOU HEARD ABOUT 6599 05:05:03,440 --> 05:05:10,160 TODAY AND EXAMPLES WHERE THEY 6600 05:05:10,160 --> 05:05:12,840 HAVE HAD SUCCESS IN GAINING 6601 05:05:12,840 --> 05:05:15,240 FUNDS FROM INDUSTRY OR FROM NIH 6602 05:05:15,240 --> 05:05:25,640 AS WE HEARD FROM THE CASE. 6603 05:05:25,640 --> 05:05:27,160 WE TALKED ABOUT THE ACADEMIC 6604 05:05:27,160 --> 05:05:28,520 PARTNERS WHERE PEOPLE ARE IN 6605 05:05:28,520 --> 05:05:31,080 TRAINING AND YOU CAN PUT YOUR 6606 05:05:31,080 --> 05:05:32,920 HOOKS INTO PEOPLE AND GET THEM 6607 05:05:32,920 --> 05:05:34,440 INTERESTED IN YOUR DISEASE AND 6608 05:05:34,440 --> 05:05:36,680 WE HAVE INVESTIGATORS WHO HAVE 6609 05:05:36,680 --> 05:05:46,080 DECIDED TO MAKE THEIR CAREER IN 6610 05:05:46,080 --> 05:05:48,960 UNDERSTANDING SO DEVELOPING 6611 05:05:48,960 --> 05:05:49,840 RELATIONSHIPS WITH THOSE PEOPLE 6612 05:05:49,840 --> 05:05:51,320 IS BENEFICIAL TO BOTH SIDES THEY 6613 05:05:51,320 --> 05:05:53,680 GET A LOT OF FULFILLMENT OUT OF 6614 05:05:53,680 --> 05:05:57,240 BEING PART OF THIS BIGGER 6615 05:05:57,240 --> 05:05:58,520 COMMUNITY AND THEY'RE WORKING IN 6616 05:05:58,520 --> 05:06:03,200 THEIR LABS DAY AND NIGHT AND A 6617 05:06:03,200 --> 05:06:05,360 LITTLE BIT OF AN ISOLATION AND 6618 05:06:05,360 --> 05:06:07,680 WHEN THEY COME TO A MEETING BY 6619 05:06:07,680 --> 05:06:09,240 DISEASE ORGANIZATION, LISTEN TO 6620 05:06:09,240 --> 05:06:12,040 THE PATIENTS AND LISTEN TO THEIR 6621 05:06:12,040 --> 05:06:13,320 CAREGIVERS AND LISTEN TO THE 6622 05:06:13,320 --> 05:06:15,440 OTHER INVESTIGATORS WHO ARE ALL 6623 05:06:15,440 --> 05:06:19,040 ENGAGE AND I THINK THAT'S A VERY 6624 05:06:19,040 --> 05:06:21,400 FULFILLING PART OF THEIR CAREER 6625 05:06:21,400 --> 05:06:23,200 AND THEY'RE THE PEOPLE WHO ARE 6626 05:06:23,200 --> 05:06:24,360 GOING TO HAVE THIS DISCOVERIES 6627 05:06:24,360 --> 05:06:29,520 THAT MAKE THINGS HAPPEN. 6628 05:06:29,520 --> 05:06:32,840 AND THE FUTURE IS REALLY IN THE 6629 05:06:32,840 --> 05:06:36,120 NEW PEOPLE WHO ARE COMING INTO 6630 05:06:36,120 --> 05:06:38,120 THE FIELD OF THE POOLS THAT ARE 6631 05:06:38,120 --> 05:06:40,960 COMING OUT AS I MENTIONED IN MY 6632 05:06:40,960 --> 05:06:42,480 TALK AND I THINK THEY'LL BLOW 6633 05:06:42,480 --> 05:06:49,240 AWAY WHAT WE HAVE NOW AND SO THE 6634 05:06:49,240 --> 05:06:51,600 ABILITY TO INFLUENCE AND GET 6635 05:06:51,600 --> 05:06:52,960 YOUNG PEOPLE TRAINED IN 6636 05:06:52,960 --> 05:06:53,840 TRANSLATION WHETHER IT'S THROUGH 6637 05:06:53,840 --> 05:06:57,200 A BOOTCAMP OR WHETHER IT'S 6638 05:06:57,200 --> 05:06:59,680 DISEASE MEETINGS AND I THINK 6639 05:06:59,680 --> 05:07:02,000 IT'S SO IMPORTANT IN GENERATING 6640 05:07:02,000 --> 05:07:06,360 THE ARMY THAT IS GROUND ZERO TO 6641 05:07:06,360 --> 05:07:10,600 SOLVE THE PROBLEMS THAT WE'VE 6642 05:07:10,600 --> 05:07:14,560 BEEN ABLE TO PUT OUT ON THE 6643 05:07:14,560 --> 05:07:17,280 TABLE AND SO DEVELOPING THE 6644 05:07:17,280 --> 05:07:18,840 WELCOME COMMUNITY FOR YOUNG 6645 05:07:18,840 --> 05:07:22,160 PHYSICIANS FOR YOUNG PHD 6646 05:07:22,160 --> 05:07:26,160 SCIENTISTS AND FOR ALL THE OTHER 6647 05:07:26,160 --> 05:07:28,160 PROFESSIONALS AND IS REALLY WHAT 6648 05:07:28,160 --> 05:07:29,680 IS A BIG INVESTMENT AND OFTEN 6649 05:07:29,680 --> 05:07:32,480 TIMES IT'S NOT SO EXPENSIVE. 6650 05:07:32,480 --> 05:07:36,320 A LITTLE MORE EXPENSIVE HAN WHEN 6651 05:07:36,320 --> 05:07:38,480 I WAS YOUNG BUT IT'S STILL A 6652 05:07:38,480 --> 05:07:44,680 FAIRLY INEXPENSIVE WAY TO REALLY 6653 05:07:44,680 --> 05:07:45,960 BUILD YOUR KADRI OF 6654 05:07:45,960 --> 05:07:46,600 INVESTIGATORS MOVING FORWARD SO 6655 05:07:46,600 --> 05:07:48,800 I WAS REALLY IMPRESSED. 6656 05:07:48,800 --> 05:07:53,040 EVERY YAR WE THINK OH BOY, 6657 05:07:53,040 --> 05:07:54,200 NON-PROFIT FORUM CAN'T BE BETTER 6658 05:07:54,200 --> 05:07:57,040 BUT IF SEEMS LIKE ONCE AGAIN YOU 6659 05:07:57,040 --> 05:07:58,800 HAVE EXCELLED AND IT GETS BETTER 6660 05:07:58,800 --> 05:08:00,880 AND BETTER AND IT'S BETTER THIS 6661 05:08:00,880 --> 05:08:03,080 YEAR THAN EVER AND SO THANK YOU 6662 05:08:03,080 --> 05:08:04,240 TO ALL THE PEOPLE WHO PUT THEIR 6663 05:08:04,240 --> 05:08:04,800 WORK IN. 6664 05:08:04,800 --> 05:08:07,680 TOMORROW WE'LL HEAR ABOUT 6665 05:08:07,680 --> 05:08:09,080 SUCCESS STORIES AND DIFFERENT 6666 05:08:09,080 --> 05:08:10,320 ORGANIZATIONS HAVE HAD AND WE 6667 05:08:10,320 --> 05:08:13,400 LIKE TO HAVE THESE SHOWERED AND 6668 05:08:13,400 --> 05:08:15,760 ALSO WE'LL HAVE TALKS AND 6669 05:08:15,760 --> 05:08:16,920 DISCUSSIONS ABOUT HOW WE MOVE TO 6670 05:08:16,920 --> 05:08:20,880 BE MORE INCLUSIVE IN THE 6671 05:08:20,880 --> 05:08:23,160 RESEARCH THAT WE DO AND THE 6672 05:08:23,160 --> 05:08:28,200 PATIENTS THAT WE SEARCH AND THEN 6673 05:08:28,200 --> 05:08:34,600 THERE'S A SESSION AS ME SAID 6674 05:08:34,600 --> 05:08:37,080 TALK AMONGST YOURSELVES TO LEARN 6675 05:08:37,080 --> 05:08:40,000 FROM EACH OTHER AND THESE BREAK 6676 05:08:40,000 --> 05:08:43,600 OUTS AND SO THERE'S GOING TO BE 6677 05:08:43,600 --> 05:08:46,640 IN THE LINK IN THE CHATBOX OF 6678 05:08:46,640 --> 05:08:49,360 PEOPLE TO TAKE THIS SURVEY THAT 6679 05:08:49,360 --> 05:08:50,160 WILL INFORM THE BREAK OUT 6680 05:08:50,160 --> 05:08:51,720 SESSION AND ASSIGNMENTS TOMORROW 6681 05:08:51,720 --> 05:08:53,360 SO IF YOU HAVEN'T DONE THAT, 6682 05:08:53,360 --> 05:08:59,520 PLEASE DO THAT NOW AND IT WILL 6683 05:08:59,520 --> 05:09:00,680 HELP US TOMORROW AND THERE'S 6684 05:09:00,680 --> 05:09:01,640 OPPORTUNITIES STILL AVAILABLE TO 6685 05:09:01,640 --> 05:09:08,240 TALK TO THE PROGRAM DIRECTORS 6686 05:09:08,240 --> 05:09:10,320 AND EVERY SINGLE DISEASE HAS A 6687 05:09:10,320 --> 05:09:11,480 PROGRAM DIRECTOR IN CHARGE OF 6688 05:09:11,480 --> 05:09:12,920 THAT DISEASE AND SOME PROGRAM 6689 05:09:12,920 --> 05:09:14,680 DIRECTORS HAVE ONE DISEASE LIKE 6690 05:09:14,680 --> 05:09:16,320 THE STROKE FOLKS AND SOME LIKE 6691 05:09:16,320 --> 05:09:18,120 JOE MORRIS PROBABLY HAVE 30 6692 05:09:18,120 --> 05:09:20,000 DIFFERENT DISEASES IN THEIR 6693 05:09:20,000 --> 05:09:21,880 PORTFOLIO AND MOSTLY RARE 6694 05:09:21,880 --> 05:09:25,800 DISEASES AND THE PROGRAM 6695 05:09:25,800 --> 05:09:30,800 DIRECTORS ARE HERE TO HELP YOU 6696 05:09:30,800 --> 05:09:35,360 ACCESS THE SN NIH RESEARCHERS OS 6697 05:09:35,360 --> 05:09:38,440 IN YOUR FIELD BECAUSE IT'S 6698 05:09:38,440 --> 05:09:40,320 REALLY DOVE TAILS WITH OUR 6699 05:09:40,320 --> 05:09:43,640 MISSION AND ALMOST ALL THE CASES 6700 05:09:43,640 --> 05:09:45,480 THAT YOU HAVE. 6701 05:09:45,480 --> 05:09:47,520 THANK YOU AGAIN TO THE GROUP AND 6702 05:09:47,520 --> 05:09:50,120 LOOK FORWARD TO DISCUSSIONS 6703 05:09:50,120 --> 05:09:50,360 TOMORROW. 6704 05:09:50,360 --> 05:09:51,800 HAVE A GOOD EVENING. 6705 05:09:51,800 --> 05:10:03,240 I WISH WE WERE IN-PERSON.