1 00:00:05,120 --> 00:00:10,200 I WANT TO WELCOME EVERYONE TO 2 00:00:10,200 --> 00:00:12,760 THE SECOND DAY OF THE ALS 3 00:00:12,760 --> 00:00:13,400 STRATEGIC PLANNING WORKSHOP THAT 4 00:00:13,400 --> 00:00:14,040 NIH IS HOSTING. 5 00:00:14,040 --> 00:00:15,600 WE'LL GET STARTED IN A COUPLE 6 00:00:15,600 --> 00:00:17,080 MINUTES BUT FIRST I WANT TO 7 00:00:17,080 --> 00:00:18,920 REMIND YOU WE'LL CONTINUE TO 8 00:00:18,920 --> 00:00:20,240 ACCEPT ALL QUESTIONS AND 9 00:00:20,240 --> 00:00:24,960 COMMENTS REGARDING THE DRAFT 10 00:00:24,960 --> 00:00:26,240 PRIORITIES FOR ALS STRATEGY 11 00:00:26,240 --> 00:00:26,440 PLAN. 12 00:00:26,440 --> 00:00:28,000 YOU CAN SEND IN QUESTIONS AND 13 00:00:28,000 --> 00:00:32,320 COMMENTS ON THE WEBINAR VIA THE 14 00:00:32,320 --> 00:00:36,880 ZOOM Q&A BOX OR IF YOU'RE NOT ON 15 00:00:36,880 --> 00:00:38,440 THE WEBINAR OR WANT TO USE THE 16 00:00:38,440 --> 00:00:39,440 FORUM WE'LL PUT IT IN THE CHAT 17 00:00:39,440 --> 00:00:48,640 AND YOU'LL ABLE TO ACCESS THIS 18 00:00:48,640 --> 00:00:56,120 VE VIA THE WEBSITE. 19 00:00:56,120 --> 00:00:59,560 YOU CAN E-MAIL OUR LOGISTICS 20 00:00:59,560 --> 00:01:03,000 EXPERT WITH ANY QUESTIONS. 21 00:01:03,000 --> 00:01:04,560 WE'RE REGARDING THE WORKSHOP 22 00:01:04,560 --> 00:01:06,600 TODAY AS YESTERDAY AND THE 23 00:01:06,600 --> 00:01:07,200 RECORDING WILL BE AVAILABLE 24 00:01:07,200 --> 00:01:08,880 WITHIN ONE WEEK OR SO OF THE 25 00:01:08,880 --> 00:01:09,760 EVENT. 26 00:01:09,760 --> 00:01:14,920 NOW, I'D LIKE TO INTRODUCE OUR 27 00:01:14,920 --> 00:01:17,080 STRATEGIC PLAN STEER COMMITTEE 28 00:01:17,080 --> 00:01:18,080 CO-LEADS WITH DR. BROWN AND 29 00:01:18,080 --> 00:01:21,440 SATTLER FOR THEM TO WELCOME US 30 00:01:21,440 --> 00:01:23,800 AND ENTER INTO DAY 2. 31 00:01:23,800 --> 00:01:25,800 >>GOOD MORNING. 32 00:01:25,800 --> 00:01:28,400 I'D LIKE BEGIN BY WELCOMING 33 00:01:28,400 --> 00:01:29,760 EVERYONE BACK TO DAY 2 OF THE 34 00:01:29,760 --> 00:01:33,600 STRATEGIC PLANNING WORKSHOP. 35 00:01:33,600 --> 00:01:40,520 IT'S BEEN AN INCREDIBLE DIALOG. 36 00:01:40,520 --> 00:01:42,640 WE ENJOYED THE COMMENTS 37 00:01:42,640 --> 00:01:45,240 YESTERDAY WHICH I HOPE CAPTURED 38 00:01:45,240 --> 00:01:48,080 THE EXCITEMENT ALL OF US IN ALS 39 00:01:48,080 --> 00:01:49,760 HOPE IS HERE AS WE MOVE IN THE 40 00:01:49,760 --> 00:01:55,360 NEXT GENERATION OF THERAPIES 41 00:01:55,360 --> 00:01:58,720 TOWARD MEANINGFUL SOLUTIONS TO 42 00:01:58,720 --> 00:01:58,880 ALS. 43 00:01:58,880 --> 00:02:00,520 I THINK THEY'RE CLOSE AT HAND 44 00:02:00,520 --> 00:02:02,280 AND IT'S BEEN AN HONOR TO 45 00:02:02,280 --> 00:02:03,160 PARTICIPATE IN THE DISCUSSION SO 46 00:02:03,160 --> 00:02:03,320 FAR. 47 00:02:03,320 --> 00:02:06,640 IF THERE'S ONE THING WE AGREED 48 00:02:06,640 --> 00:02:08,600 ON IS THAT THESE ARE EXCITING 49 00:02:08,600 --> 00:02:10,320 TIMES AND WE NEED TO FOCUS AND 50 00:02:10,320 --> 00:02:13,480 BRING NEW TOOLS TO BEAR IN 51 00:02:13,480 --> 00:02:20,240 UNDERSTANDING SPRAD ACHE ALS -- 52 00:02:20,240 --> 00:02:21,600 SPORADIC TOPICS AND TODAY WE'LL 53 00:02:21,600 --> 00:02:23,880 LOOK AT AN ADDITIONAL SET OF 54 00:02:23,880 --> 00:02:25,200 WORK GROUP AND DR. SATTLER WILL 55 00:02:25,200 --> 00:02:27,240 REVIEW THE OUTLINE FOR THE DAY. 56 00:02:27,240 --> 00:02:27,440 RITA. 57 00:02:27,440 --> 00:02:28,200 >>THANK YOU. 58 00:02:28,200 --> 00:02:29,920 AND WELCOME EVERYBODY. 59 00:02:29,920 --> 00:02:30,960 WELCOME BACK FOR THOSE WHO 60 00:02:30,960 --> 00:02:33,440 JOINED YESTERDAY AND I CAN ONLY 61 00:02:33,440 --> 00:02:35,400 DITTO WHAT BOB JUST SAID. 62 00:02:35,400 --> 00:02:40,800 IT WAS A WONDERFUL DAY YESTERDAY 63 00:02:40,800 --> 00:02:51,240 AND REALLY INDEED THERE'S 64 00:02:52,760 --> 00:02:57,160 EXCITEMENT TO FOCUS ON THE 65 00:02:57,160 --> 00:02:57,960 TREATMENT AND FIND CURES FOR 66 00:02:57,960 --> 00:02:59,240 THIS DEVASTATING DISEASE. 67 00:02:59,240 --> 00:03:00,800 TO INTRODUCE WHERE WE'LL GO 68 00:03:00,800 --> 00:03:01,240 TODAY. 69 00:03:01,240 --> 00:03:02,680 YOU CAN SEE HERE IT'S JUST AGAIN 70 00:03:02,680 --> 00:03:05,200 A SUMMARY OF THE WORKING GROUPS 71 00:03:05,200 --> 00:03:08,080 WE HAVE PUT TOGETHER FOR THIS 72 00:03:08,080 --> 00:03:10,800 EFFORT AND YESTERDAY YOU HEARD A 73 00:03:10,800 --> 00:03:12,200 LOT ABOUT THE RESEARCH BEHIND 74 00:03:12,200 --> 00:03:14,560 ALS AND HOW WE TRANSLATE THE 75 00:03:14,560 --> 00:03:18,120 FINDINGS THAT WE HAVE IN THE 76 00:03:18,120 --> 00:03:21,760 LABORATORY AND BRING THEM TO THE 77 00:03:21,760 --> 00:03:24,960 CLINIC AND HOW DO WE UTILIZE 78 00:03:24,960 --> 00:03:27,360 THEM IN THE CLINIC AND PERFORM 79 00:03:27,360 --> 00:03:30,400 CLINICAL TRIALS FOR PATIENTS WE 80 00:03:30,400 --> 00:03:37,600 CAN INTEGRATE PATIENTS NOT JUST 81 00:03:37,600 --> 00:03:40,440 SYMPTOMATICALLY BUT PRESYMPTOM 82 00:03:40,440 --> 00:03:42,320 ATCALLY AND WAS A TOPIC 83 00:03:42,320 --> 00:03:42,600 YESTERDAY. 84 00:03:42,600 --> 00:03:45,760 WHAT WE'LL FOCUS ON TODAY IS THE 85 00:03:45,760 --> 00:03:46,680 PEOPLE LIVING WITH ALS. 86 00:03:46,680 --> 00:03:50,160 FOR THAT WE HAVE TWO WORKING 87 00:03:50,160 --> 00:03:52,320 GROUPS AND ONE TRULY FOCUSSED ON 88 00:03:52,320 --> 00:03:53,760 THE QUALITY OF LIFE OF PEOPLE 89 00:03:53,760 --> 00:03:55,240 WITH ALS AND THIS IS AN 90 00:03:55,240 --> 00:03:56,560 IMPORTANT TOPIC FOR US BECAUSE 91 00:03:56,560 --> 00:04:01,560 THERE'S A LOT THAT CAN STILL BE 92 00:04:01,560 --> 00:04:10,280 DONE IN ORDER TO FACILITATE HOW 93 00:04:10,280 --> 00:04:12,640 PEOPLE WITH ALS AND CAREGIVERS 94 00:04:12,640 --> 00:04:14,360 GO THROUGH DAY TO DAY LIFE AND 95 00:04:14,360 --> 00:04:15,880 THERE'S A LOT TO BE DONE AND 96 00:04:15,880 --> 00:04:18,160 WE'LL DISCUSS IT IN DETAIL AND 97 00:04:18,160 --> 00:04:19,040 WE HAVE AN INCREDIBLE WORKING 98 00:04:19,040 --> 00:04:22,240 GROUP TO ADDRESS THE TOPIC. 99 00:04:22,240 --> 00:04:25,400 WHAT WE WANT TO ADDRESS IS HOW 100 00:04:25,400 --> 00:04:30,560 CAN WE IMPROVE AND OPTIMIZE 101 00:04:30,560 --> 00:04:33,000 SYMPTOM MANAGEMENT 102 00:04:33,000 --> 00:04:35,040 PHARMACOLOGICALLY AND 103 00:04:35,040 --> 00:04:35,720 NON-PHARMACOLOGICALLY FOR PEOPLE 104 00:04:35,720 --> 00:04:40,440 WITH ALS AND HOW CAN WE 105 00:04:40,440 --> 00:04:44,440 FUNCTIONALIZE PEOPLE LIVING WITH 106 00:04:44,440 --> 00:04:46,800 ALS AND THERE'S TECHNOLOGIES 107 00:04:46,800 --> 00:04:48,880 ALLOWING PEOPLE LIVING WITH ALS 108 00:04:48,880 --> 00:04:50,680 TO CONTINUE COMMUNICATION WITH 109 00:04:50,680 --> 00:04:52,280 THE OUTSIDE WORLD EVEN IF THEY 110 00:04:52,280 --> 00:04:53,840 LOSE THEIR ABILITY TO SPEAK. 111 00:04:53,840 --> 00:04:56,720 THIS IS GOING TO BE A REALLY 112 00:04:56,720 --> 00:04:58,200 IMPORTANT TOPIC WE NEED TO FOCUS 113 00:04:58,200 --> 00:05:00,000 ON IN THE FUTURE AND FINALLY, IT 114 00:05:00,000 --> 00:05:04,000 IS IMPORTANT FOR US WE CAN 115 00:05:04,000 --> 00:05:05,360 IDENTIFY MORE AND NEW RESOURCES 116 00:05:05,360 --> 00:05:08,680 AND AVAILABILITY OF THE 117 00:05:08,680 --> 00:05:09,760 RESOURCES FOR EVERYBODY FOR 118 00:05:09,760 --> 00:05:11,200 EVERY PERSON THAT LIVES WITH ALS 119 00:05:11,200 --> 00:05:12,960 AND THEY'RE CAREGIVERS TO MAKE 120 00:05:12,960 --> 00:05:15,320 SURE THAT ACCESS TO THESE 121 00:05:15,320 --> 00:05:17,720 RESOURCES ARE THERE AND 122 00:05:17,720 --> 00:05:19,240 POTENTIALLY IDENTIFY NEW 123 00:05:19,240 --> 00:05:20,160 RESOURCES WE CAN PROVIDE FOR 124 00:05:20,160 --> 00:05:24,080 THIS PATIENT POPULATION. 125 00:05:24,080 --> 00:05:28,120 THEN IN THE LAST WORKING GROUP, 126 00:05:28,120 --> 00:05:29,640 OF IF I CAN HAVE THE LAST SLIDE 127 00:05:29,640 --> 00:05:31,760 AND I FORGOT TO MENTION THE 128 00:05:31,760 --> 00:05:33,080 CO-CHAIRS BUT THEY'LL INTRODUCE 129 00:05:33,080 --> 00:05:34,360 THEMSELVES SHORTLY AND THE 130 00:05:34,360 --> 00:05:37,760 CO-CHAIRS FOR THE LAST WORK 131 00:05:37,760 --> 00:05:43,920 GROUP, DR. LISA GOLD AND DAN 132 00:05:43,920 --> 00:05:46,000 DOCTOROFF AND A TOPIC IS HOW DO 133 00:05:46,000 --> 00:05:46,960 WE BRING EVERYBODY TOGETHER AT 134 00:05:46,960 --> 00:05:49,920 THE TABLE SO THAT WE CAN MOVE 135 00:05:49,920 --> 00:05:52,240 FASTER AND MORE EFFICIENTLY TO 136 00:05:52,240 --> 00:05:55,080 OUR COMMON GOAL AND THIS IS 137 00:05:55,080 --> 00:05:56,040 REALLY TO PROVIDE OPPORTUNITIES 138 00:05:56,040 --> 00:05:59,960 FOR COLLABORATION AND FOR 139 00:05:59,960 --> 00:06:01,400 PARTNERSHIPS. 140 00:06:01,400 --> 00:06:03,560 AND IT WAS DISCUSSED YESTERDAY A 141 00:06:03,560 --> 00:06:07,000 LOT WE NEED MORE MULTI-MODAL 142 00:06:07,000 --> 00:06:08,600 PLATFORMS TO SHARE DATA AND 143 00:06:08,600 --> 00:06:10,080 SHARE RESEARCH TOOLS AND 144 00:06:10,080 --> 00:06:13,560 PROTOCOLS AND BIO SAMPLES AND 145 00:06:13,560 --> 00:06:14,520 THAT NEEDS TO BE AVAILABLE FOR 146 00:06:14,520 --> 00:06:17,080 EVERYBODY, FOR ACADEMICS, FOR 147 00:06:17,080 --> 00:06:18,360 CLINICIANS, FOR INDUSTRY. 148 00:06:18,360 --> 00:06:21,960 WE NEED TO FOSTER THIS CLOSE 149 00:06:21,960 --> 00:06:23,040 RELATIONSHIP ESPECIALLY BETWEEN 150 00:06:23,040 --> 00:06:24,520 INDUSTRY AND ACADEMIA. 151 00:06:24,520 --> 00:06:27,880 THERE'S STRENGTH IN BOTH SITES 152 00:06:27,880 --> 00:06:31,560 AND A LOT OF STRENGTH IN THE 153 00:06:31,560 --> 00:06:33,760 INTELLECTUAL DISCOVERY WE HAVE 154 00:06:33,760 --> 00:06:37,720 IN ACADEMIA AND STRENGTH IN HOW 155 00:06:37,720 --> 00:06:38,680 INDUSTRY CAN GRAB THIS 156 00:06:38,680 --> 00:06:39,640 INTELLECTUAL PROPERTY AND MOVE 157 00:06:39,640 --> 00:06:41,680 IT FORWARD TOWARDS A MEANINGFUL 158 00:06:41,680 --> 00:06:43,360 DEVELOPMENT OF THERAPEUTICS THAT 159 00:06:43,360 --> 00:06:44,040 WE CAN THEN PROVIDE TO PATIENT 160 00:06:44,040 --> 00:06:48,560 WITH ALS. 161 00:06:48,560 --> 00:06:53,120 WE'RE EXCITED TO DISCUSS BOTH 162 00:06:53,120 --> 00:06:55,240 TOPICS AS PRIORITIES IN TODAY'S 163 00:06:55,240 --> 00:06:55,480 SESSION. 164 00:06:55,480 --> 00:06:58,000 AND JUST LIKE YESTERDAY WE WANT 165 00:06:58,000 --> 00:07:03,680 TO START OFF OUR DAY WITH WHAT 166 00:07:03,680 --> 00:07:05,800 WE CALL OUR ALS LIVED EXPERIENCE 167 00:07:05,800 --> 00:07:06,080 PANEL. 168 00:07:06,080 --> 00:07:08,760 LIKE YESTERDAY IT WILL BE 169 00:07:08,760 --> 00:07:18,920 CO-CHAIRED BY LAYNE OLIFF AND 170 00:07:18,920 --> 00:07:21,200 ELLYN PHILLIPS AND LISTEN TO THE 171 00:07:21,200 --> 00:07:21,920 QUESTIONS RAISED. 172 00:07:21,920 --> 00:07:23,280 I'LL HAND IT OVER AND I WISH 173 00:07:23,280 --> 00:07:25,320 EVERYBODY A GREAT DAY AND I LOOK 174 00:07:25,320 --> 00:07:26,560 FORWARD TO MEANINGFUL 175 00:07:26,560 --> 00:07:27,080 DISCUSSIONS AND COMMENTS. 176 00:07:27,080 --> 00:07:34,040 THANK YOU, EVERYBODY. 177 00:07:34,040 --> 00:07:35,840 >>THANK YOU, RITA AND WHAT A 178 00:07:35,840 --> 00:07:37,240 GREAT DAY, YESTERDAY. 179 00:07:37,240 --> 00:07:42,840 IT REALLY WAS. 180 00:07:42,840 --> 00:07:46,200 GOOD MORNING, EVERYONE. 181 00:07:46,200 --> 00:07:48,600 HOPEFULLY MY VOICE WILL HOLD OUT 182 00:07:48,600 --> 00:07:49,760 TODAY TO THEN OF THE DAY. 183 00:07:49,760 --> 00:07:53,320 WHAT WE WANT TO DO THIS MORNING 184 00:07:53,320 --> 00:08:03,760 IS GIVE A COUPLE MINUTES 185 00:08:07,520 --> 00:08:09,080 HIGHLIGHT AND ELLYN WILL TAKE A 186 00:08:09,080 --> 00:08:10,600 QUESTION AND I'LL TAKE A 187 00:08:10,600 --> 00:08:12,080 QUESTION AND WE'LL END WITH A 188 00:08:12,080 --> 00:08:13,760 THANK YOU. 189 00:08:13,760 --> 00:08:16,520 KEY HIGHLIGHTS FROM THE PANELS 190 00:08:16,520 --> 00:08:19,200 SPECIFICALLY YESTERDAY, I WOULD 191 00:08:19,200 --> 00:08:21,720 USE THE WORDS CAUTIOUSLY 192 00:08:21,720 --> 00:08:25,760 OPTIMISTIC. 193 00:08:25,760 --> 00:08:28,800 THE PANELISTS WERE VERY EXCITED 194 00:08:28,800 --> 00:08:31,640 ABOUT THE IDEA OF AN ALS DRAFT 195 00:08:31,640 --> 00:08:37,200 PLAN BUT WERE CAUTIOUSLY 196 00:08:37,200 --> 00:08:41,720 OPTIMISTIC AND ON THE 197 00:08:41,720 --> 00:08:44,200 IMPLEMENTATION AND THAT'S THE 198 00:08:44,200 --> 00:08:49,760 KEY FINDINGS I SEE FROM THE 199 00:08:49,760 --> 00:08:51,440 PANEL YESTERDAY. 200 00:08:51,440 --> 00:08:54,320 ELLYN, DO YOU HAVE INSIGHT? 201 00:08:54,320 --> 00:08:55,480 >>FOR SURE. 202 00:08:55,480 --> 00:08:59,800 AND LAYNE THANK YOU FOR ALL YOUR 203 00:08:59,800 --> 00:09:00,800 SUPPORT AND HELP. 204 00:09:00,800 --> 00:09:03,800 I FEEL LIKE A NEOPHYTE THOUGH 205 00:09:03,800 --> 00:09:05,400 I'M HOLDER THAN YOU AND I 206 00:09:05,400 --> 00:09:06,960 APPRECIATE EVERYTHING YOU HAVE 207 00:09:06,960 --> 00:09:09,840 DONE AND ALL OF THE PANELISTS 208 00:09:09,840 --> 00:09:15,680 AND NINDS AS WELL. 209 00:09:15,680 --> 00:09:17,040 SOME TAKEAWAYS FROM YESTERDAY, 210 00:09:17,040 --> 00:09:23,360 THE PANELISTS WANT TO STAY 211 00:09:23,360 --> 00:09:23,720 INVOLVED. 212 00:09:23,720 --> 00:09:29,480 AND YOU CAN SEE THAT PEOPLE ARE 213 00:09:29,480 --> 00:09:31,440 SO EXCITED ABOUT THE 214 00:09:31,440 --> 00:09:33,600 POSSIBILITIES THAT COULD BE 215 00:09:33,600 --> 00:09:37,200 BROUGHT FORTH FROM THE STRATEGIC 216 00:09:37,200 --> 00:09:37,640 PLAN. 217 00:09:37,640 --> 00:09:41,480 AND THE SECOND TAKEAWAY IS THAT 218 00:09:41,480 --> 00:09:44,280 EVERYONE WANTS TO MAKE SURE THAT 219 00:09:44,280 --> 00:09:46,400 THERE'S FUNDING AND MAKING SURE 220 00:09:46,400 --> 00:09:49,240 THAT IT DOES GET FUNDED. 221 00:09:49,240 --> 00:09:50,480 I BELIEVE WALTER ADDRESSED THAT 222 00:09:50,480 --> 00:10:00,800 YESTERDAY. 223 00:10:00,800 --> 00:10:00,920 LAYNE. 224 00:10:00,920 --> 00:10:02,760 >>DO YOU WANT TO INTRODUCE THE 225 00:10:02,760 --> 00:10:03,040 PANELISTS. 226 00:10:03,040 --> 00:10:08,480 >>WE'RE THE FIRST TWO ON THE 227 00:10:08,480 --> 00:10:08,720 PHOTOS. 228 00:10:08,720 --> 00:10:17,760 THERE'S GWEN AND ED AND ANDREA 229 00:10:17,760 --> 00:10:21,880 AND ALISON AND NADIA AND COOPER 230 00:10:21,880 --> 00:10:22,680 AND STEVE. 231 00:10:22,680 --> 00:10:27,400 I'LL ASK THE FIRST QUESTION -- I 232 00:10:27,400 --> 00:10:29,680 WANT TO MENTION ABOUT ALLISON 233 00:10:29,680 --> 00:10:30,440 FIRST. 234 00:10:30,440 --> 00:10:40,880 >>WHY DON'T YOU DO THAT. 235 00:10:41,480 --> 00:10:43,200 >>UNFORTUNATELY, ALLISON WON'T 236 00:10:43,200 --> 00:10:44,720 BE ON TODAY. 237 00:10:44,720 --> 00:10:46,920 SHE HAD A MEDICAL EMERGENCY WITH 238 00:10:46,920 --> 00:10:49,520 HER SISTER AND THAT'S ALL WE 239 00:10:49,520 --> 00:10:50,320 KNOW AS A PRIORITY. 240 00:10:50,320 --> 00:10:55,720 SHE WILL NOT BE ON TODAY. 241 00:10:55,720 --> 00:10:58,280 WE HAVE ANSWERS FOR HER 242 00:10:58,280 --> 00:11:00,760 QUESTIONS AND WE'LL BE PREPARED 243 00:11:00,760 --> 00:11:01,400 WITH THOSE. 244 00:11:01,400 --> 00:11:03,120 >>THE FIRST QUESTION IS WHAT 245 00:11:03,120 --> 00:11:03,720 WAS YOUR ROLE IN THE WORKING 246 00:11:03,720 --> 00:11:13,840 GROUP? 247 00:11:21,760 --> 00:11:22,600 COOPER. 248 00:11:22,600 --> 00:11:31,720 >>I US UP STUDYING FOR AN EXAM. 249 00:11:31,720 --> 00:11:33,760 THE WORKING GROUP FUNCTIONED 250 00:11:33,760 --> 00:11:36,400 LIKE LAB MEETINGS I HAD. 251 00:11:36,400 --> 00:11:37,920 I THINK WE ALL BROUGHT A LOT OF 252 00:11:37,920 --> 00:11:38,640 TO THE TABLE. 253 00:11:38,640 --> 00:11:43,280 I DON'T HAVE THE HUBRIS TO THINK 254 00:11:43,280 --> 00:11:44,160 I BROUGHT ANYTHING SUPER 255 00:11:44,160 --> 00:11:44,720 SPECIAL. 256 00:11:44,720 --> 00:11:54,600 I THINK MY FOCUS WAS ON 257 00:11:54,600 --> 00:11:56,160 PRE-SYMPTOMATIC TESTING AND WE 258 00:11:56,160 --> 00:11:57,440 ALL PUT ASIDE OUR THEORIES AND 259 00:11:57,440 --> 00:11:59,440 WHAT WE BELIEVE IS THE MOST 260 00:11:59,440 --> 00:12:01,320 IMPORTANT TARGET BUT I FEEL THE 261 00:12:01,320 --> 00:12:03,160 PRIORITIES WE PUT FORWARD ARE 262 00:12:03,160 --> 00:12:04,360 BROAD AND GENERATIVE. 263 00:12:04,360 --> 00:12:06,480 I WAS GRATEFUL FOR THAT AND 264 00:12:06,480 --> 00:12:07,120 THOUGHT WE ALL BROUGHT A LOT TO 265 00:12:07,120 --> 00:12:12,680 THE TABLE. 266 00:12:12,680 --> 00:12:13,920 >>THANK YOU, COOPER. 267 00:12:13,920 --> 00:12:18,240 NADIA. 268 00:12:18,240 --> 00:12:20,000 >>I THINK I BROUGHT THE 269 00:12:20,000 --> 00:12:20,880 COMMUNITY PERSPECTIVE TO MY 270 00:12:20,880 --> 00:12:21,160 GROUP. 271 00:12:21,160 --> 00:12:26,440 IT WAS A BRILLIANT GROUP OF 272 00:12:26,440 --> 00:12:29,240 PEOPLE BUT HAVING THE EXPERIENCE 273 00:12:29,240 --> 00:12:31,360 OF HAVING GONE THROUGH ALS OUR 274 00:12:31,360 --> 00:12:31,920 CONCERNS ARE A LITTLE BIT 275 00:12:31,920 --> 00:12:32,520 DIFFERENT. 276 00:12:32,520 --> 00:12:37,240 I THINK THAT IS WHAT I BROUGHT 277 00:12:37,240 --> 00:12:39,480 TO THE GROUP WAS SHARING THE 278 00:12:39,480 --> 00:12:40,720 PERSPECTIVE OF SOMEBODY WHO'S 279 00:12:40,720 --> 00:12:43,120 LIVED THE DISEASE AND THE 280 00:12:43,120 --> 00:12:43,440 OBSTACLES. 281 00:12:43,440 --> 00:12:47,080 I'M STILL CARRYING AROUND MY 282 00:12:47,080 --> 00:12:48,760 HUSBAND'S GENETIC TESTING 283 00:12:48,760 --> 00:12:50,280 RESULTS AND NO ONE WILL TAKE THE 284 00:12:50,280 --> 00:12:51,640 DATA FROM ME. 285 00:12:51,640 --> 00:12:55,720 PERSPECTIVES LIKE THAT THAT I 286 00:12:55,720 --> 00:12:57,480 THINK ARE IMPORTANT AND MISSED. 287 00:12:57,480 --> 00:12:58,080 THAT'S WHAT I BROUGHT TO MY 288 00:12:58,080 --> 00:13:08,200 GROUP. 289 00:13:16,520 --> 00:13:16,720 GWEN. 290 00:13:16,720 --> 00:13:22,280 >>I'M GWEN PETERSEN. 291 00:13:22,280 --> 00:13:27,360 I'M LIVING WITH ALS DIAGNOSED IN 292 00:13:27,360 --> 00:13:37,920 2018 AND YOU HEARD ME YESTERDAY. 293 00:13:44,440 --> 00:13:46,880 AND MY GROUP WAS OPTIMIZING ALS 294 00:13:46,880 --> 00:13:49,440 CLINICAL RESEARCH AND WE 295 00:13:49,440 --> 00:13:53,720 PRESENTED YESTERDAY AFTERNOON 296 00:13:53,720 --> 00:14:02,000 WAS LEVERAGED MY KILLS AS A 297 00:14:02,000 --> 00:14:03,680 FORMER PROFESSIONAL, FULL-TIME 298 00:14:03,680 --> 00:14:04,800 RECRUITER AND THE BASICS I 299 00:14:04,800 --> 00:14:11,800 OFFERED AND MANY OF YOU KNOW ME. 300 00:14:11,800 --> 00:14:15,400 YOU KNOW I'M ALWAYS WILLING TO 301 00:14:15,400 --> 00:14:17,400 JUMP IN AND OFFER ORGANIZATIONAL 302 00:14:17,400 --> 00:14:19,760 SUPPORT, SCHEDULING, 303 00:14:19,760 --> 00:14:20,880 CALENDARING. 304 00:14:20,880 --> 00:14:24,520 IT'S JUST PART OF PROFESSIONALLY 305 00:14:24,520 --> 00:14:25,920 I HAD TO BE A PROFESSIONAL WHEN 306 00:14:25,920 --> 00:14:36,200 IT CAME TO THAT. 307 00:14:39,360 --> 00:14:43,360 I TOOK CARE OF PRE MEETING 308 00:14:43,360 --> 00:14:53,800 ACTION ITEMS AND DELIVERABLES. 309 00:14:53,800 --> 00:14:54,800 AN ASSUMED THE RESPONSIBILITIES 310 00:14:54,800 --> 00:15:05,240 FOR TWO REASONS. 311 00:15:05,240 --> 00:15:06,720 THE COORDINATOR WAS ASSUMING 312 00:15:06,720 --> 00:15:12,400 MOST THE RESPONSIBILITY AND 313 00:15:12,400 --> 00:15:16,040 SHE'S BUSY. 314 00:15:16,040 --> 00:15:17,440 SHE HAS A FULL CALENDAR. 315 00:15:17,440 --> 00:15:20,200 I WANTED TO TAKE THAT OFF OF 316 00:15:20,200 --> 00:15:21,200 HER. 317 00:15:21,200 --> 00:15:23,120 AND SECOND REASON WHY I DID IT 318 00:15:23,120 --> 00:15:26,840 WAS AGAIN MANY OF THE MEMBERS ON 319 00:15:26,840 --> 00:15:33,640 THESE PANELS ARE ACTIVELY SEEING 320 00:15:33,640 --> 00:15:36,600 PATIENTS AND I'M BIASED. 321 00:15:36,600 --> 00:15:40,520 I WANT PATIENTS TO COME FIRST 322 00:15:40,520 --> 00:15:46,720 AND NOT LET MINUTIA OF 323 00:15:46,720 --> 00:15:47,640 SCHEDULING, CALENDARING, GET IN 324 00:15:47,640 --> 00:15:48,120 THE WAY. 325 00:15:48,120 --> 00:15:49,840 THAT'S THE TYPE OF SUPPORT I 326 00:15:49,840 --> 00:15:50,200 BROUGHT. 327 00:15:50,200 --> 00:15:53,520 >>THANK YOU, GWEN. 328 00:15:53,520 --> 00:15:53,720 STEVE. 329 00:15:53,720 --> 00:15:57,880 >>GOOD MORNING, EVERYBODY. 330 00:15:57,880 --> 00:16:01,000 MY NAME IS STEVE AND HAPPY TO BE 331 00:16:01,000 --> 00:16:03,640 HERE AND DIAGNOSED WITH ALS IN 332 00:16:03,640 --> 00:16:06,320 2017 AND REACHED MY FIVE-YEAR 333 00:16:06,320 --> 00:16:08,640 MARK IN LIVING WITH THIS 334 00:16:08,640 --> 00:16:09,280 DISEASE. 335 00:16:09,280 --> 00:16:13,680 I AM PART OF THE QUALITY OF LIFE 336 00:16:13,680 --> 00:16:16,400 WORKING GROUP AND AS I SAID 337 00:16:16,400 --> 00:16:16,920 YESTERDAY PATIENT LIVED 338 00:16:16,920 --> 00:16:19,760 EXPERIENCE IS CRITICAL AND I 339 00:16:19,760 --> 00:16:21,680 APPLAUD THE NIH FOR INCLUDING 340 00:16:21,680 --> 00:16:25,280 ALL OF US PALS AND GALS IN 341 00:16:25,280 --> 00:16:26,720 PROVIDING OUR INPUT. 342 00:16:26,720 --> 00:16:29,760 LIKE GWEN SAID OUR LIVED 343 00:16:29,760 --> 00:16:33,760 EXPERIENCES ARE TWOFOLD. 344 00:16:33,760 --> 00:16:37,320 THEY'RE PRIOR TO ALS AND PENN IR 345 00:16:37,320 --> 00:16:39,760 LIVED EXPERIENCE AFTER ALS. 346 00:16:39,760 --> 00:16:41,160 FOR ME I SPENT 34 YEARS IN THE 347 00:16:41,160 --> 00:16:44,160 HIGH TECH WORLD AND BRING A 348 00:16:44,160 --> 00:16:49,280 SECURITY SCIENCE ASPECT TO THIS 349 00:16:49,280 --> 00:16:51,200 CONVERSATION AS WELL AS MY 350 00:16:51,200 --> 00:16:51,800 PERSONAL EXPERIENCE. 351 00:16:51,800 --> 00:16:55,440 WHEN I STARTED THIS ENDEAVOR I 352 00:16:55,440 --> 00:16:57,320 DUG DEEP IN THE 300 RESPONSES TO 353 00:16:57,320 --> 00:17:03,480 THE RFI WE ALL RECEIVED. 354 00:17:03,480 --> 00:17:05,400 I WANTED TO GO THROUGH EACH ONE 355 00:17:05,400 --> 00:17:10,480 OF THOSE AND PARS OUT WA WHAT 356 00:17:10,480 --> 00:17:11,640 WAS IMPORTANT IN TERMS OF 357 00:17:11,640 --> 00:17:13,960 QUALITY OF LIFE AND I WAS ABLE 358 00:17:13,960 --> 00:17:16,480 TO BRING THIS TO A TALENT THE 359 00:17:16,480 --> 00:17:17,760 GROUP OF PEOPLE AND THINK OF 360 00:17:17,760 --> 00:17:19,200 WAYS TO IMPROVING QUALITY OF 361 00:17:19,200 --> 00:17:20,560 LIFE AND A LOOK FORWARD TO THAT 362 00:17:20,560 --> 00:17:21,760 PRESENTATION AFTER WE HAVE OUR 363 00:17:21,760 --> 00:17:22,320 PANEL DISCUSSION RIGHT NOW. 364 00:17:22,320 --> 00:17:29,880 THANKS. 365 00:17:29,880 --> 00:17:30,600 >>THANK YOU. 366 00:17:30,600 --> 00:17:30,760 ED. 367 00:17:30,760 --> 00:17:34,840 >>I WAS DIAGNOSED IN 2015. 368 00:17:34,840 --> 00:17:40,120 I'D SAY MY ROLE IN THE SUBGROUP 369 00:17:40,120 --> 00:17:41,080 WAS TWOFOLD. 370 00:17:41,080 --> 00:17:43,280 FIRST WAS TO LISTEN AND LEARN. 371 00:17:43,280 --> 00:17:44,920 I KEEP A LIST OF THE GIFTS OF 372 00:17:44,920 --> 00:17:47,200 ALS ON MY PHONE AND ONE IS THE 373 00:17:47,200 --> 00:17:48,640 AMAZING NETWORK OF PEOPLE I'VE 374 00:17:48,640 --> 00:17:50,200 MET ON THIS JOURNEY. 375 00:17:50,200 --> 00:17:52,400 MY SECOND ROLE WAS TO CHAMPION 376 00:17:52,400 --> 00:17:57,120 THE CONCEPT OF THE NEED FOR BIG 377 00:17:57,120 --> 00:18:03,760 DATA ANDIO FLUID -- BIO FLUID 378 00:18:03,760 --> 00:18:05,560 IN LABORATORIES. 379 00:18:05,560 --> 00:18:07,040 UNTIL YOU UNDERSTAND ROOT CAUSE 380 00:18:07,040 --> 00:18:09,080 ANY SOLUTION IS JUST A BAND-AID. 381 00:18:09,080 --> 00:18:11,520 I REMAIN CONVINCED UNTIL WE 382 00:18:11,520 --> 00:18:13,000 UNDERSTAND THE SUBGROUPS OF THE 383 00:18:13,000 --> 00:18:14,680 DISEASE, ANY DRUG TRIAL HAS THE 384 00:18:14,680 --> 00:18:20,240 RISK OF BEING A SHOT IN THE 385 00:18:20,240 --> 00:18:22,160 DARK. 386 00:18:22,160 --> 00:18:24,840 SO MY JOB WAS TO CHAMPION THAT 387 00:18:24,840 --> 00:18:27,560 CONCEPT AS PART OF THE SUBTEAM 388 00:18:27,560 --> 00:18:28,680 AND AS I SAID EARLIER TO LEARN 389 00:18:28,680 --> 00:18:29,160 FROM A BUNCH OF GREAT 390 00:18:29,160 --> 00:18:36,120 COLLEAGUES. 391 00:18:36,120 --> 00:18:41,760 >>THANK YOU. 392 00:18:41,760 --> 00:18:45,880 >>IN THE PARTNERSHIP AND 393 00:18:45,880 --> 00:18:47,600 COLLABORATIONS WORKING GROUP AND 394 00:18:47,600 --> 00:18:49,520 IF YOU KNOW ME YOU KNOW IT'S A 395 00:18:49,520 --> 00:18:50,200 TRUE PASSION OF MINE. 396 00:18:50,200 --> 00:18:50,960 I'M NOT SHY. 397 00:18:50,960 --> 00:18:55,280 I'LL TALK TO ANYBODY WHO I THINK 398 00:18:55,280 --> 00:18:55,960 CAN PULL TOGETHER THE 399 00:18:55,960 --> 00:18:57,960 INFORMATION WE NEED AND MAY HAVE 400 00:18:57,960 --> 00:18:59,360 THE EXPERTISE TO HELP US MOVE 401 00:18:59,360 --> 00:19:03,960 OUR OBJECTIVES SO FORWARD. 402 00:19:03,960 --> 00:19:07,800 MY ROLE IN THE WORKING GROUP WAS 403 00:19:07,800 --> 00:19:09,040 AN A CAREGIVER AND ALS 404 00:19:09,040 --> 00:19:10,120 PROFESSIONAL AND WORKED TWO 405 00:19:10,120 --> 00:19:10,440 PRIORITIES. 406 00:19:10,440 --> 00:19:13,600 ONE WAS TO FOCUS ON INCREASING 407 00:19:13,600 --> 00:19:16,120 THE DIVERSITY OF RESEARCH 408 00:19:16,120 --> 00:19:17,200 DATABASES USING A HEALTH EQUITY 409 00:19:17,200 --> 00:19:21,720 LENS AND SECONDLY WAS TO 410 00:19:21,720 --> 00:19:23,080 ESTABLISH A COMPREHENSIVE 411 00:19:23,080 --> 00:19:26,080 RESEARCH PROJECT LANDSCAPE. 412 00:19:26,080 --> 00:19:28,720 ONE OF THOSE PRIORITIES MOVING 413 00:19:28,720 --> 00:19:34,280 FORWARD ON THE HEALTH EQUITY 414 00:19:34,280 --> 00:19:37,560 LENS FRONT WAS TO HELP MEME WITH 415 00:19:37,560 --> 00:19:39,480 ALS HAVE BETTER ACCESS TO 416 00:19:39,480 --> 00:19:42,520 RESOURCES AND CLINICAL TRIALS 417 00:19:42,520 --> 00:19:45,240 AND THEN WE CAN IMPROVE THE 418 00:19:45,240 --> 00:19:46,680 DIVERSITY OF WHO'S IN THE 419 00:19:46,680 --> 00:19:47,360 RESEARCH DATABASES. 420 00:19:47,360 --> 00:19:49,760 THAT MERGED WITH THE QUALITY OF 421 00:19:49,760 --> 00:19:51,840 LIFE GROUP WHICH IS TERRIFIC. 422 00:19:51,840 --> 00:19:53,280 AS LONG AS IT'S IN THE PLAN IT'S 423 00:19:53,280 --> 00:19:53,480 GREAT. 424 00:19:53,480 --> 00:19:56,800 I DIDN'T MATTER WHO'S TAKING 425 00:19:56,800 --> 00:19:59,320 CREDIT FOR IT, WE'RE ALL IN THIS 426 00:19:59,320 --> 00:19:59,640 TOGETHER. 427 00:19:59,640 --> 00:20:00,920 THE OTHER PIECE THAT WAS 428 00:20:00,920 --> 00:20:02,000 IMPORTANT TO ME IN THE WORK 429 00:20:02,000 --> 00:20:04,400 GROUP AS A THIRD PRIORITY WAS TO 430 00:20:04,400 --> 00:20:08,880 DEVELOP A COMPREHENSIVE RESEARCH 431 00:20:08,880 --> 00:20:10,000 LANDSCAPE BECAUSE IF WE CAN'T 432 00:20:10,000 --> 00:20:11,200 IDENTIFY ALL THE AREAS IN WHICH 433 00:20:11,200 --> 00:20:14,000 RESEARCH IS TAKING PLACE AND WHO 434 00:20:14,000 --> 00:20:16,320 IS DOING THAT RESEARCH HOW ARE 435 00:20:16,320 --> 00:20:19,880 WE GOING TO COLLABORATE? 436 00:20:19,880 --> 00:20:21,440 I FELT THOSE WERE THE TWO PIECES 437 00:20:21,440 --> 00:20:24,720 I WAS ABLE TO BRING AND WAS 438 00:20:24,720 --> 00:20:27,080 INCREDIBLY PLEASED WE WERE IN A 439 00:20:27,080 --> 00:20:29,720 HIGH QUALITY, DEDICATED GROUP OF 440 00:20:29,720 --> 00:20:29,920 PEOPLE. 441 00:20:29,920 --> 00:20:33,680 >>THANK YOU, ANDREA. 442 00:20:33,680 --> 00:20:35,360 LAYNE WOULD YOU LIKE TO READ 443 00:20:35,360 --> 00:20:39,880 ALLISON'S SUBMISSION? 444 00:20:39,880 --> 00:20:44,120 >>I WILL. 445 00:20:44,120 --> 00:20:46,600 I WAS A PART OF A REALLY GREAT 446 00:20:46,600 --> 00:20:49,200 WORKING GROUP WHICH I BELIEVE 447 00:20:49,200 --> 00:20:53,720 WAS MADE OF INDIVIDUAL 448 00:20:53,720 --> 00:20:55,480 CONTRIBUTORS BROUGHT GEM BECAUSE 449 00:20:55,480 --> 00:21:00,480 OF THEIR EDUCATION, EXPERTISE 450 00:21:00,480 --> 00:21:03,840 AND EXPERIENCE AND PERSPECTIVE. 451 00:21:03,840 --> 00:21:06,040 BASED ON THAT I TRIED TO BRING 452 00:21:06,040 --> 00:21:10,800 THE PERSPECTIVE OF MANY COMBINED 453 00:21:10,800 --> 00:21:11,360 VIEWS. 454 00:21:11,360 --> 00:21:14,960 OF COURSE MY OWN LICHED 455 00:21:14,960 --> 00:21:16,440 EXPERIENCES HAVING TRAVELED THE 456 00:21:16,440 --> 00:21:18,720 ALS PATHWAY WITH MY HUSBAND BUT 457 00:21:18,720 --> 00:21:22,040 BEING VERY ACTIVE IN THE 458 00:21:22,040 --> 00:21:27,680 COMMUNITY AT LARGE HAS TAUGHT ME 459 00:21:27,680 --> 00:21:29,040 THAT WHILE WE ALL MAY SHARE 460 00:21:29,040 --> 00:21:32,480 THINGS SUCH AS PAIN, GRIEF AND 461 00:21:32,480 --> 00:21:34,720 LOSS, OUR EXPERIENCES AND 462 00:21:34,720 --> 00:21:37,280 OPTIONS WHEN MANEUVERING OUR 463 00:21:37,280 --> 00:21:39,800 LIFE WHEN IMPACTED BY ALS CAN BE 464 00:21:39,800 --> 00:21:40,760 VASTLY DIFFERENT. 465 00:21:40,760 --> 00:21:46,760 IN TALKING WITH FAMILIES 466 00:21:46,760 --> 00:21:51,880 IMPACTED BY ALS THROUGH MY WORK 467 00:21:51,880 --> 00:21:53,360 I HAVE BEEN EXPERIENCING THE ALS 468 00:21:53,360 --> 00:21:56,720 JOURNEY IN MANY DIFFERENT FORMS 469 00:21:56,720 --> 00:22:00,840 WITH VARYING RESOURCES, 470 00:22:00,840 --> 00:22:05,880 DIFFERENT LEVELS OF KNOWLEDGE 471 00:22:05,880 --> 00:22:09,040 ABOUT BOTH RESEARCH OPTIONS. 472 00:22:09,040 --> 00:22:11,800 I'VE SEEN MANY DIFFERENT FAMILY 473 00:22:11,800 --> 00:22:15,120 DYNAMICS AT PLAY, DIFFERENT 474 00:22:15,120 --> 00:22:19,080 SUPPORT SYSTEMS AND DIFFERENT 475 00:22:19,080 --> 00:22:24,760 FINANCIAL CAPABILITIES ALL 476 00:22:24,760 --> 00:22:27,600 COMBINED WITH A HORRIFIC MENU OF 477 00:22:27,600 --> 00:22:29,160 SYMPTOMS THAT CAN BE PRESENT IN 478 00:22:29,160 --> 00:22:39,680 MANY COMBINATIONS AT ANY TIME. 479 00:22:41,920 --> 00:22:43,600 AND THOUGHT MY POSITION WOULD BE 480 00:22:43,600 --> 00:22:45,480 A SPONGE AND SEEK AND LEARN AND 481 00:22:45,480 --> 00:22:47,080 UNDERSTAND THE NEEDS OF ALL OF 482 00:22:47,080 --> 00:22:53,280 THOSE IMPACTED BY ALS AND TO 483 00:22:53,280 --> 00:22:58,320 FUNNEL THAT KNOWLEDGE INTO INPUT 484 00:22:58,320 --> 00:23:02,600 AND PERSPECTIVE THAT CAN HELP 485 00:23:02,600 --> 00:23:04,080 MAKE DECISION ARE GOOD DECISIONS 486 00:23:04,080 --> 00:23:09,880 FOR THE COMMUNITY AS A WHOLE, 487 00:23:09,880 --> 00:23:16,840 FOR PATIENTS, FOR CAREGIVERS AND 488 00:23:16,840 --> 00:23:19,120 FAMILY MEMBERS AND ALL THE 489 00:23:19,120 --> 00:23:19,840 PEOPLE WITHIN THE ORGANIZATION 490 00:23:19,840 --> 00:23:20,240 THAT SUPPORT THEM. 491 00:23:20,240 --> 00:23:21,800 THANK YOU. 492 00:23:21,800 --> 00:23:27,600 >>THANK YOU, LAYNE. 493 00:23:27,600 --> 00:23:28,480 >>OH, DID YOU WANT TO ADD 494 00:23:28,480 --> 00:23:29,200 ANYTHING BEFORE I GET TO THE 495 00:23:29,200 --> 00:23:39,440 LAST QUESTION? 496 00:23:40,240 --> 00:23:42,960 >>I WOULD LIKE TO SAY THIS HAS 497 00:23:42,960 --> 00:23:44,280 BEEN AN INCREDIBLE EXPERIENCE. 498 00:23:44,280 --> 00:23:48,520 I HAVE SERVED ON NINDS COUNCIL. 499 00:23:48,520 --> 00:23:50,720 THAT OPENED MY EYES TO A LOT OF 500 00:23:50,720 --> 00:23:56,200 THINGS AND THAT WAS SEVERAL 501 00:23:56,200 --> 00:24:02,320 DECADES AGO. 502 00:24:02,320 --> 00:24:04,320 AS MEMBERS OF THE STEERING 503 00:24:04,320 --> 00:24:06,400 COMMITTEE WE CAN LISTEN AND SIT 504 00:24:06,400 --> 00:24:10,760 AND PARTICIPATE ON ANY OF THE 505 00:24:10,760 --> 00:24:15,200 WORKING GROUPS. 506 00:24:15,200 --> 00:24:17,360 I WAS VERY CONCERNED ABOUT THE 507 00:24:17,360 --> 00:24:18,040 READABILITY OF THE DOCUMENT AND 508 00:24:18,040 --> 00:24:20,280 GIVE KUDOS TO PEOPLE WHO 509 00:24:20,280 --> 00:24:25,920 EVERYONE WHO HAD A HAND IN 510 00:24:25,920 --> 00:24:31,480 WRITING THIS BECAUSE IT WAS EASY 511 00:24:31,480 --> 00:24:33,480 TO READ ESPECIALLY THE 512 00:24:33,480 --> 00:24:34,520 NON-TECHNICAL SUMMARY. 513 00:24:34,520 --> 00:24:35,920 I THINK PEOPLE WILL APPRECIATE 514 00:24:35,920 --> 00:24:36,280 THAT VERY MUCH. 515 00:24:36,280 --> 00:24:43,040 >>GREAT COMMENT. 516 00:24:43,040 --> 00:24:45,680 THERE IS A FOCUS IN THE 517 00:24:45,680 --> 00:24:50,480 NON-SCIENTIFIC ALS COMMUNITY IN 518 00:24:50,480 --> 00:24:55,960 THIS DOCUMENT. 519 00:24:55,960 --> 00:24:57,720 IT'S SO IMPORTANT. 520 00:24:57,720 --> 00:25:03,400 AND LET ME ASK WHAT ONE OR TWO 521 00:25:03,400 --> 00:25:09,840 KEY TAKEAWAYS AND WOULD YOU HAVE 522 00:25:09,840 --> 00:25:12,320 FUND THIS PLAN THE ALS STRATEGIC 523 00:25:12,320 --> 00:25:13,160 PLAN. 524 00:25:13,160 --> 00:25:15,800 COOPER, I'LL MAKE YOU START. 525 00:25:15,800 --> 00:25:20,480 >>THANKS, LAYNE. 526 00:25:20,480 --> 00:25:23,800 I'M VERY EXCITED ABOUT THIS PLAN 527 00:25:23,800 --> 00:25:24,680 AND SOMETHING WONDERFUL I SAW 528 00:25:24,680 --> 00:25:27,200 YESTERDAY I THINK REFLECTS 529 00:25:27,200 --> 00:25:29,080 FOCUSES IN OTHER AREAS. 530 00:25:29,080 --> 00:25:30,480 I FELT A LOT OF SYNERGY AND THAT 531 00:25:30,480 --> 00:25:31,760 MAKES ME THINK WE'RE ON THE 532 00:25:31,760 --> 00:25:32,280 RIGHT TRACK. 533 00:25:32,280 --> 00:25:35,840 JUST GOING DOWN THE LIST I THINK 534 00:25:35,840 --> 00:25:37,200 A BROAD THEME IS THAT WE WERE 535 00:25:37,200 --> 00:25:38,840 FOCUSSED ON MAKING SURE PEOPLE 536 00:25:38,840 --> 00:25:40,480 DIDN'T JUST LOOK WHERE THE LIGHT 537 00:25:40,480 --> 00:25:41,680 IS BEST. 538 00:25:41,680 --> 00:25:43,320 PUSHING THROUGH SOME SCIENTIFIC 539 00:25:43,320 --> 00:25:45,680 INERTIA THAT HAS EXISTED. 540 00:25:45,680 --> 00:25:48,320 FIRST AND FOREMOST WE NEED TO 541 00:25:48,320 --> 00:25:53,440 FIGURE WHAT'S GOING ON WITH 542 00:25:53,440 --> 00:25:53,640 PREP. 543 00:25:53,640 --> 00:25:56,080 IT'S A HETEROGENEOUS DISEASE. 544 00:25:56,080 --> 00:25:57,400 WE NEED GOOD MODELS AND NEED A 545 00:25:57,400 --> 00:25:58,960 WAY TO TARGET THIS AND 546 00:25:58,960 --> 00:26:00,360 UNDERSTAND IT AND INCENTIVIZE 547 00:26:00,360 --> 00:26:02,760 PEOPLE TO LOOK AT THE QUESTIONS. 548 00:26:02,760 --> 00:26:04,520 I PRAY THE FUNDING WILL COME. 549 00:26:04,520 --> 00:26:09,360 I THINK WE SET OUT TOOLS AND 550 00:26:09,360 --> 00:26:10,760 GROUND WORK TO ASK SCARY 551 00:26:10,760 --> 00:26:11,040 QUESTIONS. 552 00:26:11,040 --> 00:26:12,360 IT'S HARD. 553 00:26:12,360 --> 00:26:13,680 SPEAKING AS SOMEONE WHO THINK 554 00:26:13,680 --> 00:26:15,560 ABOUT THIS ALL DAY EVERY DAY AND 555 00:26:15,560 --> 00:26:16,760 WORKS IN THE LAB IT'S HARD TO 556 00:26:16,760 --> 00:26:18,640 DESIGN QUESTIONS AROUND THIS AND 557 00:26:18,640 --> 00:26:21,040 I THINK WE'VE INCENTIVIZED 558 00:26:21,040 --> 00:26:23,640 PEOPLE TO DO SO AND HOPE IT WILL 559 00:26:23,640 --> 00:26:25,560 BE EFFECTIVE. 560 00:26:25,560 --> 00:26:27,240 TWO, IS UNDERSTANDING CLINICAL 561 00:26:27,240 --> 00:26:27,600 HETEROGENEITY. 562 00:26:27,600 --> 00:26:31,280 HOW ARE YOU THINKING ABOUT 563 00:26:31,280 --> 00:26:33,000 CONVERSION AND PRE-SYMPTOMATIC 564 00:26:33,000 --> 00:26:35,880 CONVERSION AND RESISTANCE. 565 00:26:35,880 --> 00:26:37,120 DIVING IN AND EXPAND THE 566 00:26:37,120 --> 00:26:39,240 CLINICAL SPECTRUM TO INCLUDE 567 00:26:39,240 --> 00:26:43,040 PEOPLE WHO DON'T NECESSARILY 568 00:26:43,040 --> 00:26:46,160 HAVE MOTOR WEAKNESS AS OF YET. 569 00:26:46,160 --> 00:26:48,880 THERE'S A GROWING CONSENSUS THIS 570 00:26:48,880 --> 00:26:50,920 IS THE NECESSARY THING TO DO 571 00:26:50,920 --> 00:26:51,800 AFFECT THE DISEASE MEANINGFULLY 572 00:26:51,800 --> 00:26:54,080 AND THAT UNDERSTANDING COMES 573 00:26:54,080 --> 00:26:55,840 FROM PATIENT ADVOCACY IN NO 574 00:26:55,840 --> 00:26:57,120 SMALL PART. 575 00:26:57,120 --> 00:26:58,440 EVERYONE LISTENING WHO'S PLAYED 576 00:26:58,440 --> 00:27:00,000 A PART ON THIS GIVE YOURSELF A 577 00:27:00,000 --> 00:27:01,560 PAT ON THE BACK OR ROUND OF 578 00:27:01,560 --> 00:27:03,200 APPLAUSE BECAUSE NEVER AGAIN 579 00:27:03,200 --> 00:27:06,120 WILL WE MOVE IN THE INERTIA OF 580 00:27:06,120 --> 00:27:07,240 NOT INCLUDING THESE PEOPLE IN 581 00:27:07,240 --> 00:27:08,480 THE CONVERSATION AND IN THE BIO 582 00:27:08,480 --> 00:27:10,080 BANK AND REPOSITORIES AND 583 00:27:10,080 --> 00:27:11,280 INCLUDING NEM IN THE MODELS OF 584 00:27:11,280 --> 00:27:11,520 DISEASE. 585 00:27:11,520 --> 00:27:12,600 I FEEL STRONGLY AND SOMETHING I 586 00:27:12,600 --> 00:27:14,840 WAS ADVOCATING FOR AND WAS MY 587 00:27:14,840 --> 00:27:18,480 AGENDA IN THE GROUP AND I THINK 588 00:27:18,480 --> 00:27:21,680 THAN MANIFESTED AND SHOULD BE 589 00:27:21,680 --> 00:27:23,920 PART OF THAT. 590 00:27:23,920 --> 00:27:26,240 THREE IS COMMUNITY BUILDING AND 591 00:27:26,240 --> 00:27:26,520 LEVERAGE. 592 00:27:26,520 --> 00:27:27,960 WE TALKED ABOUT DATA 593 00:27:27,960 --> 00:27:28,400 INFRASTRUCTURES. 594 00:27:28,400 --> 00:27:29,640 WE HAD A SEPARATE MEETING TO 595 00:27:29,640 --> 00:27:31,440 DISCUSS THE BEST WAY TO 596 00:27:31,440 --> 00:27:36,520 FACILITATE THIS AND WE TALKED 597 00:27:36,520 --> 00:27:38,920 ABOUT WHAT TRAININGS MAY BE 598 00:27:38,920 --> 00:27:40,200 NECESSARY TO BRING PEOPLE IN THE 599 00:27:40,200 --> 00:27:43,920 FIELD AND EXCITED AND EVERY DAY 600 00:27:43,920 --> 00:27:46,680 THERE'S NEW TECHNIQUES COMING 601 00:27:46,680 --> 00:27:48,520 OUT AND SOMEONE WILL LOOK AT THE 602 00:27:48,520 --> 00:27:49,920 PATHWAYS WITH A NEW EYE AND FIND 603 00:27:49,920 --> 00:27:50,720 SOMETHING NEW. 604 00:27:50,720 --> 00:27:52,200 IN THAT WAY I FEEL EXCITED. 605 00:27:52,200 --> 00:27:58,600 IT'S A FOCUS ON INCLUSION ACROSS 606 00:27:58,600 --> 00:28:00,640 PATIENTS AND RESEARCHERS AND 607 00:28:00,640 --> 00:28:03,640 WHEN WE BROADEN OUR UMBRELLA AND 608 00:28:03,640 --> 00:28:05,040 PERSPECTIVE I CAN'T GO WRONG. 609 00:28:05,040 --> 00:28:06,640 I FEEL GOOD ABOUT THE DECISIONS 610 00:28:06,640 --> 00:28:08,040 WE MADE AND ULTIMATELY IT WILL 611 00:28:08,040 --> 00:28:09,760 SERVE THE COMMUNITY IF WE GET 612 00:28:09,760 --> 00:28:15,840 THE SUPPORT WE NEED. 613 00:28:15,840 --> 00:28:18,800 >>THANK YOU, COOPER. 614 00:28:18,800 --> 00:28:24,640 NADIA, ONE OR TWO KEY TAKEAWAY. 615 00:28:24,640 --> 00:28:25,280 . 616 00:28:25,280 --> 00:28:27,080 >>I HAVE TWO. 617 00:28:27,080 --> 00:28:29,000 YESTERDAY THERE WAS DISCUSSION 618 00:28:29,000 --> 00:28:32,120 FROM THE GEN ET AND FAMILIAL ALS 619 00:28:32,120 --> 00:28:35,840 COMMUNITY AND I THINK IT GETS 620 00:28:35,840 --> 00:28:37,640 LOST ON THOSE LIVING WITH ALS 621 00:28:37,640 --> 00:28:40,240 AND CAREGIVERS IT'S ALL 622 00:28:40,240 --> 00:28:40,560 INTERRELATED. 623 00:28:40,560 --> 00:28:45,680 THE THINGS WE LEARN FROM PEOPLE 624 00:28:45,680 --> 00:28:46,360 PRE-SYMPTOMATIC AFFECT ALL KINDS 625 00:28:46,360 --> 00:28:50,840 OF ALS AND IF WE FIND BIOMARKERS 626 00:28:50,840 --> 00:28:52,360 IT WILL WILLING HELP THE 627 00:28:52,360 --> 00:28:53,680 FAMILIAL COMMUNITY AND ALL THE 628 00:28:53,680 --> 00:28:56,120 TERMINOLOGY IS PROBLEMATIC AND 629 00:28:56,120 --> 00:29:01,760 HAS ISSUES, SPORADIC, FAMILIAL 630 00:29:01,760 --> 00:29:04,000 AND GENETIC HAS SOME WEAKNESSES 631 00:29:04,000 --> 00:29:06,040 BUT ALL MOVES US FORWARD AND 632 00:29:06,040 --> 00:29:09,720 DON'T WANT THAT PIECE TO GET 633 00:29:09,720 --> 00:29:11,080 LOST BECAUSE THERE'S SO MUCH 634 00:29:11,080 --> 00:29:14,160 GOOD NOISE BY THE FAMILIAL AND 635 00:29:14,160 --> 00:29:16,480 GENETIC ALS COMMUNITY YESTERDAY 636 00:29:16,480 --> 00:29:18,080 AND ADVANCES THINGS FOR ALL OF 637 00:29:18,080 --> 00:29:20,200 US AND THAT SAID WE NEED TO PARS 638 00:29:20,200 --> 00:29:22,280 OUT WHAT IS GOING ON WITH 639 00:29:22,280 --> 00:29:25,280 SPORADIC ALS AS WELL BUT IT ALL 640 00:29:25,280 --> 00:29:26,960 MOVE US FORWARD. 641 00:29:26,960 --> 00:29:28,560 MY SECOND POINT IS AS LONG AS 642 00:29:28,560 --> 00:29:29,760 I'VE BEEN INVOLVED IN ALS WORLD 643 00:29:29,760 --> 00:29:32,920 FOR THE LAST THREE YEARS THERE'S 644 00:29:32,920 --> 00:29:35,000 BEEN A STRONG CALL TO NOT 645 00:29:35,000 --> 00:29:37,520 RECREATE THE WHEEL, TO BREAKDOWN 646 00:29:37,520 --> 00:29:39,440 SILOS FOR COLLABORATION AND ON 647 00:29:39,440 --> 00:29:41,600 THAT NOTE, THERE WERE MANY 648 00:29:41,600 --> 00:29:43,760 INTERESTING IDEAS BROUGHT UP 649 00:29:43,760 --> 00:29:44,200 YESTERDAY. 650 00:29:44,200 --> 00:29:49,080 ONE BEING A NATURAL HISTORY 651 00:29:49,080 --> 00:29:53,760 STUDY AND THERE ARE ONGOING 652 00:29:53,760 --> 00:30:02,280 NATURAL STUDIES FOR ALS AND IT'S 653 00:30:02,280 --> 00:30:02,880 COMMUN 654 00:30:02,880 --> 00:30:03,520 IMPORTANT TO LEVERAGE THAT IN 655 00:30:03,520 --> 00:30:04,640 THE COMMUNITY MOVING FORWARD IN 656 00:30:04,640 --> 00:30:06,320 THE STRATEGIC PLAN. 657 00:30:06,320 --> 00:30:07,680 IT WILL HELP THINGS MOVE FASTER 658 00:30:07,680 --> 00:30:10,600 FOR ALL OF US AND WE SHOULDN'T 659 00:30:10,600 --> 00:30:13,200 BE RECREATING WHEELS AT THIS 660 00:30:13,200 --> 00:30:13,400 POINT. 661 00:30:13,400 --> 00:30:15,640 THOSE ARE MY TWO TAKEAWAYS. 662 00:30:15,640 --> 00:30:26,000 >>THANK YOU, NADIA. 663 00:30:30,120 --> 00:30:32,840 >>I'M GLAD YOU CALLED ON ME SO 664 00:30:32,840 --> 00:30:36,440 I CAN BUILD ON NADIA'S SENTIMENT 665 00:30:36,440 --> 00:30:40,080 ON LEVERAGING CURRENT ASSETS. 666 00:30:40,080 --> 00:30:43,200 ONE THING MY GROUP, WHICH WAS 667 00:30:43,200 --> 00:30:46,880 THE CLINICAL ALS RESEARCH, ONE 668 00:30:46,880 --> 00:30:52,160 THING AMONG MANY THAT WE TALKED 669 00:30:52,160 --> 00:30:58,720 ABOUT WAS LOOKING AT THE CURRENT 670 00:30:58,720 --> 00:30:59,720 LANDSCAPE AND THE BEST OF THE 671 00:30:59,720 --> 00:31:04,480 BEST AND WHAT EXISTS IN TERMS OF 672 00:31:04,480 --> 00:31:07,160 NATURAL HISTORY STUDIES. 673 00:31:07,160 --> 00:31:09,200 THE BEST OF THE BEST AND WHERE 674 00:31:09,200 --> 00:31:13,680 THE GAPS ARE AND HOW TO GO ABOUT 675 00:31:13,680 --> 00:31:15,400 FILLING THOSE GAPS. 676 00:31:15,400 --> 00:31:21,200 SO I THINK WE DID A REALLY GOOD 677 00:31:21,200 --> 00:31:24,600 KIND OF COMPREHENSIVE LOOK AT 678 00:31:24,600 --> 00:31:26,680 THE LANDSCAPE AND BUILT FROM 679 00:31:26,680 --> 00:31:30,480 THERE. 680 00:31:30,480 --> 00:31:33,960 ALSO, I'M NOT IN THE BUSINESS OF 681 00:31:33,960 --> 00:31:38,160 REPEATING NADIA AND COOPER, YOU 682 00:31:38,160 --> 00:31:40,720 GUYS SAID ALL GREAT THINGS. 683 00:31:40,720 --> 00:31:46,560 ONE THING IS I WOULD WANT THE 684 00:31:46,560 --> 00:31:49,760 LARGER COMMUNITY TO KNOW THAT 685 00:31:49,760 --> 00:31:55,360 PEOPLE LIVING WITH ALS, LOVED 686 00:31:55,360 --> 00:32:01,160 ONES ARE FAMILIAL ALS FRIENDS, 687 00:32:01,160 --> 00:32:02,720 ANYONE SERVING IN THE WORKING 688 00:32:02,720 --> 00:32:07,880 GROUPS HAD A TON TO DO WITH THIS 689 00:32:07,880 --> 00:32:08,800 STRATEGIC PLAN. 690 00:32:08,800 --> 00:32:14,240 OUR FINGERPRINTS ARE ALL OVER 691 00:32:14,240 --> 00:32:18,160 TH 692 00:32:18,160 --> 00:32:18,360 THIS. 693 00:32:18,360 --> 00:32:20,040 WE STEPPED UP AS LEADERS IN THE 694 00:32:20,040 --> 00:32:22,720 COMMUNITY AND OUR CO-LEADS 695 00:32:22,720 --> 00:32:28,800 WELCOMED US TO STEP UP WITH OUR 696 00:32:28,800 --> 00:32:30,720 THOUGHTS AND IDEAS SO I JUST 697 00:32:30,720 --> 00:32:35,960 WANT THE COMMUNITY TO KNOW THAT 698 00:32:35,960 --> 00:32:36,920 THIS DOCUMENT VERY VERY MUCH 699 00:32:36,920 --> 00:32:41,040 BUILT BY THE PEOPLE IN SQUARES 700 00:32:41,040 --> 00:32:41,640 THAT YOU'RE SEEING RIGHT HERE. 701 00:32:41,640 --> 00:32:52,000 SO THANK YOU. 702 00:32:52,000 --> 00:32:54,080 >>GREAT COMMENTS, STEVE, YOU'RE 703 00:32:54,080 --> 00:32:56,240 UP. 704 00:32:56,240 --> 00:32:57,840 THE TECH GUY -- 705 00:32:57,840 --> 00:32:59,400 >>YOU'D THINK I'D FIGURE THIS 706 00:32:59,400 --> 00:33:00,280 OUT BY NOW. 707 00:33:00,280 --> 00:33:02,160 I AGREE WITH EVERYTHING SAID SO 708 00:33:02,160 --> 00:33:03,760 IT'S HARD GOING AT THE END 709 00:33:03,760 --> 00:33:07,560 BECAUSE YOU FIND THINGS YOU HAVE 710 00:33:07,560 --> 00:33:09,120 TO ADD THAT HAVEN'T BEEN ALREADY 711 00:33:09,120 --> 00:33:14,520 SAID. 712 00:33:14,520 --> 00:33:16,440 MY LIVED EXPERIENCE IS I'VE BEEN 713 00:33:16,440 --> 00:33:17,120 INVOLVED IN MANY STRATEGIC 714 00:33:17,120 --> 00:33:22,680 PLANNING EFFORTS AND I CAN TELL 715 00:33:22,680 --> 00:33:24,320 YOU THOSE WELL CRAFTED AND WELL 716 00:33:24,320 --> 00:33:27,920 DONE GET FUNDED AND I THINK 717 00:33:27,920 --> 00:33:29,840 WE'RE ON A PATH TO TO BATCH WITH 718 00:33:29,840 --> 00:33:32,840 THIS PLAN. 719 00:33:32,840 --> 00:33:34,000 I ALSO WOULD REMIND EVERYBODY 720 00:33:34,000 --> 00:33:37,760 WHAT THIS PLAN DOES AS IT EXISTS 721 00:33:37,760 --> 00:33:40,280 RIGHT NOW EVEN TO HELP THOSE 722 00:33:40,280 --> 00:33:40,640 NEWLY DIAGNOSED. 723 00:33:40,640 --> 00:33:44,680 I WOULD HAVE LOVED TO HAVE READ 724 00:33:44,680 --> 00:33:47,040 THIS ON DAY TWO AFTER I RECEIVED 725 00:33:47,040 --> 00:33:48,200 THE DIAGNOSIS OF ALS. 726 00:33:48,200 --> 00:33:51,760 IT WOULD HAVE GIVEN ME HOPE AND 727 00:33:51,760 --> 00:33:54,080 INSPIRED ME IN WAYS I DIDN'T 728 00:33:54,080 --> 00:33:55,720 FEEL AT THE TIME THERE'S A LARGE 729 00:33:55,720 --> 00:33:58,480 GROUP OF DEDICATED AND 730 00:33:58,480 --> 00:34:00,560 PASSIONATE PEOPLE WORKING EVERY 731 00:34:00,560 --> 00:34:03,600 DAY TO MAKE THIS A BETTER 732 00:34:03,600 --> 00:34:06,800 EXPERIENCE AND ULTIMATELY GET TO 733 00:34:06,800 --> 00:34:07,360 A CURE. 734 00:34:07,360 --> 00:34:09,960 YESTERDAY I REFLECTED UPON SOME 735 00:34:09,960 --> 00:34:11,800 OF THE COMMENTS THAT SAID 736 00:34:11,800 --> 00:34:14,240 PERHAPS THIS WAS A LITTLE TOO 737 00:34:14,240 --> 00:34:14,560 AMBITIOUS. 738 00:34:14,560 --> 00:34:17,640 A LITTLE TOO LARGE IN SCOPE AND 739 00:34:17,640 --> 00:34:20,800 MY THOUGHT ON THAT IS THAT THE 740 00:34:20,800 --> 00:34:21,920 RESPONSE SHOULD BE THIS IS STILL 741 00:34:21,920 --> 00:34:24,920 THE WORK IN PROGRESS. 742 00:34:24,920 --> 00:34:26,480 THE WORD DRAFT MEANS SOMETHING. 743 00:34:26,480 --> 00:34:30,360 IT MEANS THAT WE NEED FURTHER 744 00:34:30,360 --> 00:34:34,280 FEEDBACK AND INPUT FROM PALS AND 745 00:34:34,280 --> 00:34:36,160 GALS TO STRENGTHEN THIS AND HOPE 746 00:34:36,160 --> 00:34:38,720 THOSE IN THE POSITION TO DO THAT 747 00:34:38,720 --> 00:34:39,600 TAKE THAT ADVICE MOVING FORWARD. 748 00:34:39,600 --> 00:34:45,000 THANKS. 749 00:34:45,000 --> 00:34:50,400 >>THANK YOU, STEVE. 750 00:34:50,400 --> 00:34:51,760 NEXT, ED. 751 00:34:51,760 --> 00:34:54,800 >>STEVE, TO YOUR POINT, 752 00:34:54,800 --> 00:34:58,120 EVERYONE HIT ON THE KEY COMMENTS 753 00:34:58,120 --> 00:35:01,720 BUT CONSISTENCY FROM THE ALS 754 00:35:01,720 --> 00:35:02,320 COMMUNITY IS KEY HERE. 755 00:35:02,320 --> 00:35:08,800 FOR ME, IF I LOOK AT THE PATIENT 756 00:35:08,800 --> 00:35:12,440 AND CAREGIVERS WE NEED TO 757 00:35:12,440 --> 00:35:14,480 RECOGNIZE ADVOCACY ON OUR BEHALF 758 00:35:14,480 --> 00:35:17,360 DOES MATTER AND WE NEED TO STAY 759 00:35:17,360 --> 00:35:17,720 ENGAGED. 760 00:35:17,720 --> 00:35:22,920 THE ACT FOR ALS AND APPROVAL OF 761 00:35:22,920 --> 00:35:25,760 THE DRUG OR THE FORMATION OF THE 762 00:35:25,760 --> 00:35:26,400 STRATEGY, PATIENTS AND 763 00:35:26,400 --> 00:35:27,080 CAREGIVERS PARTICIPATION HAS 764 00:35:27,080 --> 00:35:30,000 MADE A DIFFERENCE. 765 00:35:30,000 --> 00:35:37,760 SO WE NEED TO STAY ENGAGED. 766 00:35:37,760 --> 00:35:39,680 THE SECOND TAKEAWAY IS THE NIH 767 00:35:39,680 --> 00:35:40,920 HAS DONE TWO THINGS. 768 00:35:40,920 --> 00:35:45,120 THEY RAISED HOPE BY THE DEVELOP 769 00:35:45,120 --> 00:35:45,960 THE OF THE PLAN AND ALSO RAISED 770 00:35:45,960 --> 00:35:47,600 OUR EXPECTATIONS IN TERMS OF 771 00:35:47,600 --> 00:35:49,160 WHAT NIH WILL DO WITH IT. 772 00:35:49,160 --> 00:35:50,400 I THINK IN TERMS OF 773 00:35:50,400 --> 00:35:54,400 ACCOUNTABILITY, WE AS A PATIENT 774 00:35:54,400 --> 00:35:55,640 COMMUNITY HAVE A RESPONSIBILITY 775 00:35:55,640 --> 00:35:57,000 TO JUST KEEP PUSHING. 776 00:35:57,000 --> 00:36:05,760 THOSE WOULD BE MY TWO KEY 777 00:36:05,760 --> 00:36:08,320 TAKEAWAYS. 778 00:36:08,320 --> 00:36:10,040 >>GREAT COMMENTS. 779 00:36:10,040 --> 00:36:10,440 ANDREA. 780 00:36:10,440 --> 00:36:12,080 >>I HAVE TWO TAKEAWAYS. 781 00:36:12,080 --> 00:36:13,400 I DON'T THINK EITHER OF THESE 782 00:36:13,400 --> 00:36:14,080 HAVE BEEN SAID. 783 00:36:14,080 --> 00:36:15,720 ONE HAS TO DO WITH NEXT STEPS 784 00:36:15,720 --> 00:36:23,280 AND ONE HAS TO DO WITH TIMING. 785 00:36:23,280 --> 00:36:25,640 THIS WORK CANNOT END WHEN WE 786 00:36:25,640 --> 00:36:26,840 STEP AWAY FROM OUR COMPUTER 787 00:36:26,840 --> 00:36:31,680 TODAY AND WE HAVE 52 MEMBERS AND 788 00:36:31,680 --> 00:36:34,480 THE NINDS AND NIH MEMBERS AND 789 00:36:34,480 --> 00:36:36,440 CANNOT AND WILL NOT AND LET THE 790 00:36:36,440 --> 00:36:37,720 THOUSANDS OF HOURS OF WORK WE 791 00:36:37,720 --> 00:36:39,760 PUT IN THIS PLAN GO TO WASTE. 792 00:36:39,760 --> 00:36:42,120 SO STEVE, YOU'RE RIGHT, THIS IS 793 00:36:42,120 --> 00:36:42,520 A HUGE BOLD PLAN. 794 00:36:42,520 --> 00:36:47,520 NO DOUBT. 795 00:36:47,520 --> 00:36:51,120 IT WILL NEED TO BE IMPLEMENTED 796 00:36:51,120 --> 00:36:55,160 WITH INTENTION AND FORETHOUGHT. 797 00:36:55,160 --> 00:36:57,000 MY SECOND POINT IS THIS -- I'M 798 00:36:57,000 --> 00:36:58,960 GOING KEEP IT TOGETHER A MOMENT. 799 00:36:58,960 --> 00:37:00,240 I WANT TO REALIZE THE STARK 800 00:37:00,240 --> 00:37:02,160 REALITY OF WHY WE DO THIS. 801 00:37:02,160 --> 00:37:05,040 ALL OF US ON THIS PANEL ARE 802 00:37:05,040 --> 00:37:06,680 EITHER LIVING WITH ALS OR LOVED 803 00:37:06,680 --> 00:37:07,480 SOMEONE WITH ALS AND SINCE THE 804 00:37:07,480 --> 00:37:11,200 PLAN WAS ANNOUNCED IN JANUARY OF 805 00:37:11,200 --> 00:37:13,600 THIS YEAR WE'VE LOST OVER 5,000 806 00:37:13,600 --> 00:37:15,120 PEOPLE TO ALS IN THE UNITED 807 00:37:15,120 --> 00:37:16,160 STATES. 808 00:37:16,160 --> 00:37:19,280 WE ABSOLUTELY HAVE TO BE ON THE 809 00:37:19,280 --> 00:37:20,600 ALS CLOCK FOR THOSE WE'VE LOST 810 00:37:20,600 --> 00:37:25,760 TO ALS AND THE CARRIERS AND 811 00:37:25,760 --> 00:37:36,120 THOSE LIVING WITH ALS. 812 00:37:54,880 --> 00:38:00,200 >>GOOD THINGS ARE HAPPENING AND 813 00:38:00,200 --> 00:38:10,920 THEY'LL CONTINUE TO HAP JPEN AN 814 00:38:21,960 --> 00:38:23,320 THERE ARE AREAS TO IMPROVE UPON 815 00:38:23,320 --> 00:38:25,120 TO INCREASE THE SPEED OF SOME 816 00:38:25,120 --> 00:38:26,720 PROCESS, PROJECTS AND PROCESSES. 817 00:38:26,720 --> 00:38:30,600 BUT IT'S IMPORTANT TO KNOW THIS 818 00:38:30,600 --> 00:38:32,760 ISN'T ALWAYS DUE TO LACK OF 819 00:38:32,760 --> 00:38:35,600 CARING OR TRYING. 820 00:38:35,600 --> 00:38:37,320 SO MANY HAVE GIVEN SO MUCH OF 821 00:38:37,320 --> 00:38:39,720 THEIR TIME TO IDENTIFY THE MOST 822 00:38:39,720 --> 00:38:42,960 IMPORTANT CHANGES WE CAN MAKE AS 823 00:38:42,960 --> 00:38:44,360 A COMMUNITY. 824 00:38:44,360 --> 00:38:45,480 MY TAKEAWAY FOR YOU TO PLEASE 825 00:38:45,480 --> 00:38:49,720 KNOW HOW HARD PEOPLE ARE WORKING 826 00:38:49,720 --> 00:38:51,600 TO HELP US AND MY TAKEAWAY OF 827 00:38:51,600 --> 00:38:53,720 THOSE DIRECTLY IMPACTED BY ALS, 828 00:38:53,720 --> 00:38:57,280 I'M NOT SURE I CAN DO JUSTICE IN 829 00:38:57,280 --> 00:39:01,040 EXPLAINING TO YOU HOW IT CAN 830 00:39:01,040 --> 00:39:04,640 FEEL LIKE AN ETERNITY ON THE 831 00:39:04,640 --> 00:39:06,040 OUTSIDE OF YOUR PERFECTLY LAID 832 00:39:06,040 --> 00:39:11,320 PLAN AND HOPE NIH WILL CONTINUE 833 00:39:11,320 --> 00:39:16,960 TO BE FORTHRIGHT AND SPEND TIME 834 00:39:16,960 --> 00:39:18,680 IN ACTION AND MAKING THOSE 835 00:39:18,680 --> 00:39:19,440 THINGS HAPPEN. 836 00:39:19,440 --> 00:39:22,000 HOPEFULLY DURING THE SESSIONS 837 00:39:22,000 --> 00:39:26,120 HAVE YOU GROWN TO KNOW US AS 838 00:39:26,120 --> 00:39:28,320 REAL PEOPLE AND NEED TO BE 839 00:39:28,320 --> 00:39:32,480 FLEXIBLE AND TAKE RISKS ON OUR 840 00:39:32,480 --> 00:39:33,760 BEHALF. 841 00:39:33,760 --> 00:39:37,360 THIS IS NECESSARY AND 842 00:39:37,360 --> 00:39:39,080 APPRECIATED WHEN I WAS SITTING 843 00:39:39,080 --> 00:39:42,960 IN THE MEETINGS I CAN FEEL IT 844 00:39:42,960 --> 00:39:44,400 FROM THE NIH TO THE DIFFERENT 845 00:39:44,400 --> 00:39:47,200 WORK GROUPS AND CLINICIANS AND 846 00:39:47,200 --> 00:39:50,080 RESEARCHERS AND SCIENTISTS AND 847 00:39:50,080 --> 00:39:53,400 DIFFERENT ORGANIZATIONS INVOLVED 848 00:39:53,400 --> 00:39:54,160 AND THE PEOPLE WITH LIVED 849 00:39:54,160 --> 00:39:55,240 EXPERIENCE AT THE TABLE MAKING 850 00:39:55,240 --> 00:39:57,040 THE IMPORTANT DECISIONS. 851 00:39:57,040 --> 00:40:00,520 WE ARE ALL COMMITTED TO POSITIVE 852 00:40:00,520 --> 00:40:02,960 CHANGE AND TO DOING IT TOGETHER. 853 00:40:02,960 --> 00:40:05,160 IT ISN'T JUST WORDS AND ISN'T AN 854 00:40:05,160 --> 00:40:05,840 AFTER THOUGHT. 855 00:40:05,840 --> 00:40:07,280 IT'S WHERE OUR COMMUNITY IS 856 00:40:07,280 --> 00:40:08,720 HEADED AND WE'RE DEFINITELY 857 00:40:08,720 --> 00:40:19,040 PICKING UP SPEED. 858 00:40:25,840 --> 00:40:28,240 >>MOST OF WHAT I SAID HAS BEEN 859 00:40:28,240 --> 00:40:29,000 SAID. 860 00:40:29,000 --> 00:40:30,840 I GET THE SENSE VERY MUCH THAT 861 00:40:30,840 --> 00:40:34,160 NINDS IS FULLY ENGAGED AND THAT 862 00:40:34,160 --> 00:40:36,160 THIS GROUP AND EVERYONE 863 00:40:36,160 --> 00:40:38,160 LISTENING WILL NOT LET THIS SIT 864 00:40:38,160 --> 00:40:43,240 ON A SHELF. 865 00:40:43,240 --> 00:40:47,080 >>I WANT TO THANK EVERYBODY WHO 866 00:40:47,080 --> 00:40:48,120 MADE THIS POSSIBLE AND CONTINUE 867 00:40:48,120 --> 00:40:50,200 TO WORK HARD TO BRING THIS PLAN 868 00:40:50,200 --> 00:40:55,880 TO THE MASSES AND TO SEE IT TO 869 00:40:55,880 --> 00:40:56,160 FRUITION. 870 00:40:56,160 --> 00:40:58,200 >>THANK YOU. 871 00:40:58,200 --> 00:41:02,520 >>MY KEY TAKEAWAY MANY OF YOU 872 00:41:02,520 --> 00:41:05,600 TOUCHED ON IT BUT I MENTIONED IT 873 00:41:05,600 --> 00:41:10,640 YESTERDAY I WANTED TO REITERATE 874 00:41:10,640 --> 00:41:17,200 11 OUT OF 52 MEMBERS OF THIS 875 00:41:17,200 --> 00:41:25,600 DRAFT PLAN OVER 20% ARE PEOPLE 876 00:41:25,600 --> 00:41:30,240 WHO ARE ALS EXPERIENCED EXPERTS 877 00:41:30,240 --> 00:41:33,160 AND ARE GENE CARRIERS AND THAT 878 00:41:33,160 --> 00:41:41,480 IS UNPRECEDENTED IN THE FEDERAL 879 00:41:41,480 --> 00:41:42,160 PLAN PROCESS. 880 00:41:42,160 --> 00:41:46,800 WE ARE A ROLE MODEL THAT I HOPE 881 00:41:46,800 --> 00:41:51,080 OTHER FEDERAL AGENCIES WILL 882 00:41:51,080 --> 00:41:51,720 FOLLOW. 883 00:41:51,720 --> 00:41:55,800 NOT JUST IN THE ALS BUT OTHER 884 00:41:55,800 --> 00:42:02,400 NEURODEGENERATIVE DISEASES. 885 00:42:02,400 --> 00:42:04,480 NINDS WHEN THEY STARTED THE 886 00:42:04,480 --> 00:42:05,760 WHOLE PROCESS SAID WE'D HAVE 887 00:42:05,760 --> 00:42:07,720 PATIENT INPUT. 888 00:42:07,720 --> 00:42:08,640 THEY DIDN'T JUST TALK THE TALK, 889 00:42:08,640 --> 00:42:19,000 THEY WALKED THE WALK. 890 00:42:20,920 --> 00:42:22,840 I THINK THAT'S AN IMPORTANT 891 00:42:22,840 --> 00:42:23,160 PERSPECTIVE. 892 00:42:23,160 --> 00:42:25,200 SINCE WE HAVE A LITTLE BIT OF 893 00:42:25,200 --> 00:42:29,360 TIME BEFORE I DO THE THANK YOU, 894 00:42:29,360 --> 00:42:35,200 WE DO HAVE ONE QUESTION, ED AND 895 00:42:35,200 --> 00:42:41,440 I THINK ANDREA MENTIONED IT 896 00:42:41,440 --> 00:42:49,520 TOO -- I WOULD LIKE FOR YOU TO 897 00:42:49,520 --> 00:42:50,960 DISCUSS HOW THIS STRATEGIC PLAN 898 00:42:50,960 --> 00:42:52,360 COULD BE ACTIONABLE. 899 00:42:52,360 --> 00:43:01,680 I KNOW BOTH OF YOU HAD SOME 900 00:43:01,680 --> 00:43:03,200 CONCERNS YESTERDAY. 901 00:43:03,200 --> 00:43:05,840 HOW CAN WE MAKE IT ACTIONABLE? 902 00:43:05,840 --> 00:43:11,080 >>IN A WORLD OF BUSINESS 903 00:43:11,080 --> 00:43:12,760 STRATEGY DEVELOPMENT IS 904 00:43:12,760 --> 00:43:13,480 RELATIVELY EASY. 905 00:43:13,480 --> 00:43:14,800 IT'S ALWAYS THE IMPLEMENTATION 906 00:43:14,800 --> 00:43:17,640 THAT'S THE HARD PART-ONE OF MY 907 00:43:17,640 --> 00:43:20,920 FAVORITE BOOKS IS VICTOR PRONCO 908 00:43:20,920 --> 00:43:22,360 MAN SEARCH FOR MEANING AND MY 909 00:43:22,360 --> 00:43:23,920 FAVORITE LINE IS CHOICE, THE 910 00:43:23,920 --> 00:43:25,760 LAST OF THE HUMAN FREEDOMS. 911 00:43:25,760 --> 00:43:29,760 I THINK TO MAKE THIS PLAN 912 00:43:29,760 --> 00:43:31,320 ACTIONABLE, THE NIH HAS AN 913 00:43:31,320 --> 00:43:35,160 INCREDIBLY DIFFICULT TASK. 914 00:43:35,160 --> 00:43:37,080 HOW DO YOU TAKE TWO DAYS OF 915 00:43:37,080 --> 00:43:42,440 INCREDIBLE IDEAS FROM PASSIONATE 916 00:43:42,440 --> 00:43:48,320 AND DEDICATED PEOPLE THEN BOIL 917 00:43:48,320 --> 00:43:52,720 IT DOWN TO THE THINGS TO MAKE A 918 00:43:52,720 --> 00:43:58,760 DIFFERENCE AND A -- SOMEONE 919 00:43:58,760 --> 00:44:00,760 SAID YOU CAN'T THINK OF FINDING 920 00:44:00,760 --> 00:44:01,040 A CURE. 921 00:44:01,040 --> 00:44:02,280 YOU HAVE TO THINK OF IT AS A 922 00:44:02,280 --> 00:44:03,840 GAME OF DOMINOS. 923 00:44:03,840 --> 00:44:05,040 HE SAID HISTORY HAS KNOCKED DOWN 924 00:44:05,040 --> 00:44:08,800 A NUMBER OF DOMINOS THAT LED TO 925 00:44:08,800 --> 00:44:12,360 THE SCIENCE REWE REVIEWED AND 926 00:44:12,360 --> 00:44:14,200 GENOME SEQUENCE GOING FROM A 927 00:44:14,200 --> 00:44:15,960 MILLION DOLLARS TO A THOUSAND 928 00:44:15,960 --> 00:44:19,560 DOLLARS AND THE ABILITY TO STORE 929 00:44:19,560 --> 00:44:21,680 DATA IN THE CLOUD AND CRISPR 930 00:44:21,680 --> 00:44:25,320 TECHNOLOGY AND THE ABILITY TO 931 00:44:25,320 --> 00:44:27,360 DRAW BLOOD AND MAKE A MOTOR 932 00:44:27,360 --> 00:44:27,920 NEURON. 933 00:44:27,920 --> 00:44:30,840 HE SAID THOSE DOMINOS ARE DOWN 934 00:44:30,840 --> 00:44:32,160 AND WHAT ARE THE ONES IN FRONT 935 00:44:32,160 --> 00:44:34,640 OF YOU AND FOR ME IT'S FOR THE 936 00:44:34,640 --> 00:44:37,520 NIH TO DETERMINE THE TWO TO 937 00:44:37,520 --> 00:44:39,440 THREE KEY DOMINOS THAT HAVE TO 938 00:44:39,440 --> 00:44:42,400 FALL TO LEAD TO A CURE. 939 00:44:42,400 --> 00:44:44,120 ONCE YOU DETERMINE THOSE YOU 940 00:44:44,120 --> 00:44:46,640 STAFF IT AND RESOURCE AND CREATE 941 00:44:46,640 --> 00:44:48,440 A GOVERNANCE STRUCTURE THAT 942 00:44:48,440 --> 00:44:51,240 DRIVES PACE AND CADENCE AND HOLD 943 00:44:51,240 --> 00:44:52,080 YOURSELF ACCOUNTABLE. 944 00:44:52,080 --> 00:44:56,080 IT'S THE WAY I GOT THINGS DONE 945 00:44:56,080 --> 00:44:57,880 IN A GLOBAL MULTI-NATIONAL AND I 946 00:44:57,880 --> 00:44:59,520 THINK THOSE PRINCIPLES WOULD 947 00:44:59,520 --> 00:45:01,320 APPLY IN THIS CASE AS WELL. 948 00:45:01,320 --> 00:45:02,960 THOSE WOULD BE MY THOUGHTS. 949 00:45:02,960 --> 00:45:06,280 >>GREAT COMMENTS, ED. 950 00:45:06,280 --> 00:45:06,640 AND-DREA. 951 00:45:06,640 --> 00:45:10,880 >>ED, I 100% AGREE ON THE 952 00:45:10,880 --> 00:45:12,720 BUSINESS FRONT BUT I THINK I 953 00:45:12,720 --> 00:45:14,400 WANT IT ADD ONE MORE PIECE TO 954 00:45:14,400 --> 00:45:14,600 THAT. 955 00:45:14,600 --> 00:45:17,000 IN MY DECADES OF BUSINESS 956 00:45:17,000 --> 00:45:24,600 EXPERIENCE AS WELL WE SOLVED 957 00:45:24,600 --> 00:45:25,560 PROBLEMS BECAUSE WE KNEW WHAT WE 958 00:45:25,560 --> 00:45:27,720 WERE GOING FOR. 959 00:45:27,720 --> 00:45:30,160 WE HAVE A SITUATION WITH ALS 960 00:45:30,160 --> 00:45:32,640 WHERE THERE'S SO MANY UNKNOWNS. 961 00:45:32,640 --> 00:45:34,880 WE'RE LOOKING TO SOLVE SOMETHING 962 00:45:34,880 --> 00:45:35,960 THAT'S NEVER BEEN SOLVED SO I 963 00:45:35,960 --> 00:45:38,320 THINK WE NEED TO ADD TWO THINGS. 964 00:45:38,320 --> 00:45:41,200 ONE IS A LEVEL OF FLEXIBLE. 965 00:45:41,200 --> 00:45:44,000 WE CAN LEG OUT AN IMPLEMENTATION 966 00:45:44,000 --> 00:45:46,840 PLAN AND LOOK AT THE ORDER IN 967 00:45:46,840 --> 00:45:49,640 WHICH WE WANT TO OPERATION IZE 968 00:45:49,640 --> 00:45:52,200 VARIOUS ASPECTS AND SOMETHING 969 00:45:52,200 --> 00:45:53,240 UNEXPECTED WILL COME UP. 970 00:45:53,240 --> 00:45:56,720 THERE WILL BE A NEW FINDING OR 971 00:45:56,720 --> 00:45:57,480 TECHNOLOGY AND SOMETHING TO 972 00:45:57,480 --> 00:45:58,520 CREATE DISRUPTION IN OUR PLAN 973 00:45:58,520 --> 00:46:01,160 AND WE NEED TO EMBRACE IT AND 974 00:46:01,160 --> 00:46:03,040 LOOK AT THAT AND BE FLEXIBLE AND 975 00:46:03,040 --> 00:46:06,400 SAY THIS IS ANOTHER PATHWAY. 976 00:46:06,400 --> 00:46:07,680 WE MAY HAVE NOT CONSIDERED. 977 00:46:07,680 --> 00:46:10,080 I'M ENCOURAGED US TO KEEP AN 978 00:46:10,080 --> 00:46:11,200 OPEN MIND BUT RESPECT TO A 979 00:46:11,200 --> 00:46:15,840 DYNAMIC SITUATION. 980 00:46:15,840 --> 00:46:26,240 >>THANK YOU, ANDREA. 981 00:46:35,080 --> 00:46:41,320 WE WANT TO THANK YOU NIH AND 982 00:46:41,320 --> 00:46:51,880 NINDS FOR DOING WHAT THEY SAID 983 00:46:56,560 --> 00:46:59,120 INCLUDING US IN THE PROCESS AND 984 00:46:59,120 --> 00:47:02,840 HOPE THIS WILL BE USED BY OTHER 985 00:47:02,840 --> 00:47:09,680 FEDERAL AGENCIES TO EVENTUALLY 986 00:47:09,680 --> 00:47:12,040 CURE ALS AND OTHER 987 00:47:12,040 --> 00:47:12,760 NEURODEGENERATIVE DISEASES. 988 00:47:12,760 --> 00:47:18,640 WE ALSO WANT TO THANK THE ALS 989 00:47:18,640 --> 00:47:29,000 COMMUNITY AS A WHOLE. 990 00:47:30,200 --> 00:47:32,120 THERE WERE OVER 300 RESPONSE TO 991 00:47:32,120 --> 00:47:35,600 THE RFI. 992 00:47:35,600 --> 00:47:37,120 THANK YOU, ALS COMMUNITY. 993 00:47:37,120 --> 00:47:44,400 IT'S NOW OUR JOB AS A COMMUNITY 994 00:47:44,400 --> 00:47:45,640 TO SUPPORT THOSE INITIATIVES 995 00:47:45,640 --> 00:47:46,720 THAT WILL BE INLINE WITH THE 996 00:47:46,720 --> 00:47:57,000 STRATEGIC PLAN. 997 00:47:58,800 --> 00:48:01,080 IT'S BEEN SHOWN THE COMMUNITY IS 998 00:48:01,080 --> 00:48:02,400 READY TO ASSIST IN ACHIEVING THE 999 00:48:02,400 --> 00:48:07,600 GOALS OF THIS PLAN. 1000 00:48:07,600 --> 00:48:13,760 WITH THAT, I KNOW WE'RE A LITTLE 1001 00:48:13,760 --> 00:48:15,840 EARLY AGAIN AND WOULD LIKE TO 1002 00:48:15,840 --> 00:48:18,320 TURN IT OVER TO THE CO-CHAIRS OF 1003 00:48:18,320 --> 00:48:22,320 THE OPTIMIZING THE QUALITY OF 1004 00:48:22,320 --> 00:48:25,760 LIFE FOR PERSONS WITH LIVING 1005 00:48:25,760 --> 00:48:27,040 WITH ALS WORKING GROUP FOR OUR 1006 00:48:27,040 --> 00:48:27,360 NEXT SESSION. 1007 00:48:27,360 --> 00:48:37,560 THANK YOU. 1008 00:48:46,880 --> 00:48:50,400 >>THANK YOU, EVERYONE. 1009 00:48:50,400 --> 00:48:56,320 I'M TERRY HEIMAN-PATTERSON AND 1010 00:48:56,320 --> 00:48:57,240 THERE'S JEAN SWIDLER FROM THE 1011 00:48:57,240 --> 00:48:58,720 QUALITY OF LIFE WORKING GROUP 1012 00:48:58,720 --> 00:49:00,240 AND WHAT AN INSPIRATION THE 1013 00:49:00,240 --> 00:49:01,640 LIVED EXPERIENCE WORKING GROUP 1014 00:49:01,640 --> 00:49:03,400 IS TO HIGHLIGHT THE URGENCY OF 1015 00:49:03,400 --> 00:49:04,600 WHAT WE'RE DOING HERE IN 1016 00:49:04,600 --> 00:49:06,200 DEVELOPING THE STRATEGIC PLAN 1017 00:49:06,200 --> 00:49:12,360 AND PUSHING FORWARD FOR FUNDING. 1018 00:49:12,360 --> 00:49:17,760 BEFORE I INTRODUCE OUR WORKING 1019 00:49:17,760 --> 00:49:21,400 GROUP I WANT TO REMIND EVERYBODY 1020 00:49:21,400 --> 00:49:24,120 THE WORKSHOP ATTENDEES CAN ENTER 1021 00:49:24,120 --> 00:49:28,280 QUESTIONS IN THE ZOOM Q&A BOX 1022 00:49:28,280 --> 00:49:29,520 AND ENTER QUESTIONS AND COMMENTS 1023 00:49:29,520 --> 00:49:31,400 FOR THE WEBSITE. 1024 00:49:31,400 --> 00:49:32,680 SO PLEASE DO. 1025 00:49:32,680 --> 00:49:35,400 WE HAVE SOME QUESTIONS AT THE 1026 00:49:35,400 --> 00:49:37,760 END WERE ALREADY SUBMITTED. 1027 00:49:37,760 --> 00:49:40,600 I WANT TO TELL YOU WHAT AN HONOR 1028 00:49:40,600 --> 00:49:44,040 IT'S BEEN TO CONTRIBUTE TO THIS 1029 00:49:44,040 --> 00:49:45,320 STRATEGIC PLAN AND DEVELOPING 1030 00:49:45,320 --> 00:49:49,760 THE PRIORITIES THAT WILL IMPACT 1031 00:49:49,760 --> 00:49:50,760 THE QUALITY OF LIFE. 1032 00:49:50,760 --> 00:49:52,520 AND TO WORK WITH THE WORKING 1033 00:49:52,520 --> 00:49:54,480 GROUP THAT I WORKED WITH WAS 1034 00:49:54,480 --> 00:49:56,600 REALLY A PRIVILEGE. 1035 00:49:56,600 --> 00:50:00,480 MY COLLEAGUES, ALL OF WHOM WERE 1036 00:50:00,480 --> 00:50:02,360 LIKE-MINDED AND FOCUSSED ON 1037 00:50:02,360 --> 00:50:03,760 DOING THE BEST JOB POSSIBLE TO 1038 00:50:03,760 --> 00:50:05,240 BRING THE PRIORITY TO LIFE. 1039 00:50:05,240 --> 00:50:07,920 EVERYONE IN THE GROUP WAS 1040 00:50:07,920 --> 00:50:11,520 COMMITTED AND REALLY CONTRIBUTED 1041 00:50:11,520 --> 00:50:21,920 MAJ -- MAJORLY TO THE 1042 00:50:30,920 --> 00:50:33,320 PRIORITIES AND MY CAREER HAS 1043 00:50:33,320 --> 00:50:36,400 BEEN SPENT TAKING CARE OF PEOPLE 1044 00:50:36,400 --> 00:50:38,080 LIVING WITH ALS AND DOING 1045 00:50:38,080 --> 00:50:39,400 CLINICAL AND BASIC RESEARCH. 1046 00:50:39,400 --> 00:50:45,280 THAT CAREER IS NOW 40 YEARS AND 1047 00:50:45,280 --> 00:50:51,640 IT'S HARD TO BELIEVE I'D LIKE 1048 00:50:51,640 --> 00:50:53,440 ASK MY CO-CHAIR TO INTRODUCE 1049 00:50:53,440 --> 00:50:56,120 HERSELF AND WE'LL GO THROUGH 1050 00:50:56,120 --> 00:50:57,160 EVERYBODY. 1051 00:50:57,160 --> 00:50:57,720 >>THANK YOU. 1052 00:50:57,720 --> 00:51:02,520 I'M JEAN SWIDLER THE GENETIC ALS 1053 00:51:02,520 --> 00:51:07,120 ADVOCATE AND I HAVE THE REPEAT 1054 00:51:07,120 --> 00:51:08,600 EXPANSION AND MY GREAT 1055 00:51:08,600 --> 00:51:11,400 GRANDFATHER AND GRANDMOTHER DIED 1056 00:51:11,400 --> 00:51:11,760 OF ALS. 1057 00:51:11,760 --> 00:51:15,040 AND MY AUNT IS LIVING WITH ALS 1058 00:51:15,040 --> 00:51:18,560 NOW AND I HAVE 12 AUNTS, UNCLES, 1059 00:51:18,560 --> 00:51:20,800 SIBLINGS WHO HAVE A 50/50 SHOT 1060 00:51:20,800 --> 00:51:21,800 OF HAVING THE MUTATION. 1061 00:51:21,800 --> 00:51:25,560 I DON'T KNOW WHO WOULD LIKE TO 1062 00:51:25,560 --> 00:51:26,680 INTRODUCE THEMSELVES NEXT OR 1063 00:51:26,680 --> 00:51:29,720 WILL YOU CALL FOLKS OUT? 1064 00:51:29,720 --> 00:51:33,000 >>SURE. 1065 00:51:33,000 --> 00:51:37,680 DR. ANDREWS ARE YOU ON? 1066 00:51:37,680 --> 00:51:41,760 >>I'M JINSY ANDREWS AT COLUMBIA 1067 00:51:41,760 --> 00:51:42,080 UNIVERSITY. 1068 00:51:42,080 --> 00:51:45,360 I'M A CLINICAL NEUROLOGIST AND 1069 00:51:45,360 --> 00:51:50,240 ALS SPECIALIST AND CO-CHAIR. 1070 00:51:50,240 --> 00:51:55,640 >>DR. CARTER ARE YOU AVAILABLE? 1071 00:51:55,640 --> 00:51:59,880 >>HI, I'M CHELSEY CARTER AT IN 1072 00:51:59,880 --> 00:52:02,880 THE SCHOOL OF PUBLIC HEALTH AT 1073 00:52:02,880 --> 00:52:04,880 YALE UNIVERSITY AND RESEARCHER 1074 00:52:04,880 --> 00:52:06,920 IN THE ALS BASE AND VOLUNTEER 1075 00:52:06,920 --> 00:52:08,320 AND ADVOCATE FOR ALS SINCE I WAS 1076 00:52:08,320 --> 00:52:08,480 15. 1077 00:52:08,480 --> 00:52:09,240 THANKS FOR HAVING ME. 1078 00:52:09,240 --> 00:52:17,280 >>THANK YOU. 1079 00:52:17,280 --> 00:52:20,560 >>GOOD MORNING. 1080 00:52:20,560 --> 00:52:26,600 I'M MELANIE FRIED-OKEN AND I 1081 00:52:26,600 --> 00:52:27,800 WORK AT OREGON UNIVERSITY AND A 1082 00:52:27,800 --> 00:52:34,480 HAVE A 40 YEAR WORKING WITH PALS 1083 00:52:34,480 --> 00:52:36,040 IN THE AREA OF ASSISTIVE 1084 00:52:36,040 --> 00:52:38,400 COMMUNICATION AND KNOWN AS 1085 00:52:38,400 --> 00:52:40,480 ALTERNATIVE COMMUNICATION. 1086 00:52:40,480 --> 00:52:44,160 CURRENTLY, WITH A 15-YEAR LAB 1087 00:52:44,160 --> 00:52:44,720 LOOKING AT BRAIN COMPUTER 1088 00:52:44,720 --> 00:52:48,880 INTERFACES. 1089 00:52:48,880 --> 00:52:52,320 >>THANKS, MELANIE. 1090 00:52:52,320 --> 00:52:56,480 >>HI, EVERYONE, AGAIN. 1091 00:52:56,480 --> 00:52:58,280 I INTRODUCED MYSELF IN THE 1092 00:52:58,280 --> 00:53:01,000 PREVIOUS SECTION BUT MY NAME IS 1093 00:53:01,000 --> 00:53:03,280 STEVE AND I'VE BEEN LIVING WITH 1094 00:53:03,280 --> 00:53:04,840 ALS SINCE 2017. 1095 00:53:04,840 --> 00:53:07,240 PRIOR TO ALS I SPENT MY CAREER 1096 00:53:07,240 --> 00:53:10,040 IN TECH WORKING FOR A SMALL 1097 00:53:10,040 --> 00:53:12,080 COMPANY IN CAN CUPERTINO CALLED 1098 00:53:12,080 --> 00:53:12,880 APPLE. 1099 00:53:12,880 --> 00:53:15,360 YOU MAY HAVE HEARD OF IT. 1100 00:53:15,360 --> 00:53:20,480 I LIVE HERE IN BOSTON, 1101 00:53:20,480 --> 00:53:23,960 MASSACHUSETTS AND AM NOW RETIRED 1102 00:53:23,960 --> 00:53:26,640 AND DEDICATE MY WAKING HOURS TO 1103 00:53:26,640 --> 00:53:31,600 ALS ADVOCACY. 1104 00:53:31,600 --> 00:53:35,200 >>THANK YOU, STEVE. 1105 00:53:35,200 --> 00:53:36,520 >>I'M EMILY PLOWMAN. 1106 00:53:36,520 --> 00:53:38,840 I'M A PROFESSOR AT THE 1107 00:53:38,840 --> 00:53:40,240 UNIVERSITY OF FLORIDA IN 1108 00:53:40,240 --> 00:53:43,880 GAINSVILLE, GO GATORS. 1109 00:53:43,880 --> 00:53:46,480 AND TRAINED AS A SPEECH LANGUAGE 1110 00:53:46,480 --> 00:53:47,680 PATHOLOGIST BUT REALLY 1111 00:53:47,680 --> 00:53:50,480 PASSIONATE ABOUT DEVELOPING 1112 00:53:50,480 --> 00:53:51,880 PROACTIVE MANAGEMENT APPROACHES 1113 00:53:51,880 --> 00:53:54,480 FOR IMPROVING AND OPTIMIZING 1114 00:53:54,480 --> 00:53:56,120 BREATHING FUNCTIONS, AIRWAY 1115 00:53:56,120 --> 00:53:58,160 CLEARANCE AND SWALLOWING 1116 00:53:58,160 --> 00:54:01,360 FUNCTION AND I ACTUALLY DO HAVE 1117 00:54:01,360 --> 00:54:04,080 A NATURAL HISTORY STUDY FUNDED 1118 00:54:04,080 --> 00:54:06,920 BY THE NINDS LOOKING AT 1119 00:54:06,920 --> 00:54:08,080 PROGRESSION OF DYSFUNCTION OVER 1120 00:54:08,080 --> 00:54:09,200 THE COURSE OF THE DISEASE AND 1121 00:54:09,200 --> 00:54:10,320 IT'S A TRUE HONOR TO BE HERE. 1122 00:54:10,320 --> 00:54:17,760 THANK YOU VERY MUCH. 1123 00:54:19,880 --> 00:54:22,120 >>DR. SIMMONS WAS UNABLE TO BE 1124 00:54:22,120 --> 00:54:23,920 HERE AND MUCH OF HIS RESEARCH 1125 00:54:23,920 --> 00:54:25,720 HAS BEEN IN QUALITY OF LIFE 1126 00:54:25,720 --> 00:54:26,200 METRICS. 1127 00:54:26,200 --> 00:54:27,760 HE WAS INVALUABLE AND 1128 00:54:27,760 --> 00:54:29,200 CONTRIBUTED TO ANSWERING SOME OF 1129 00:54:29,200 --> 00:54:36,080 THE QUESTIONS YOU'LL HEAR LATER. 1130 00:54:36,080 --> 00:54:44,840 AND DR. HETTINGER WHO KEPT US 1131 00:54:44,840 --> 00:54:45,080 TOGETHER. 1132 00:54:45,080 --> 00:54:47,000 >> 1133 00:54:47,000 --> 00:54:50,680 >>I WON'T BE INTRODUCING 1134 00:54:50,680 --> 00:54:50,920 MYSELF. 1135 00:54:50,920 --> 00:54:52,680 >>SHE'S IS IN THE BACKGROUND 1136 00:54:52,680 --> 00:54:57,400 BUT SHE KEPT US TOGETHER. 1137 00:54:57,400 --> 00:54:58,360 WE APPRECIATE THE NIH SUPPORT 1138 00:54:58,360 --> 00:55:02,360 AND WORKING GROUP. 1139 00:55:02,360 --> 00:55:04,880 I'D LIKE TO ASK JEAN SWIDLER TO 1140 00:55:04,880 --> 00:55:06,640 KICK IT OFF WITH A PERSON STORY 1141 00:55:06,640 --> 00:55:08,640 OF HOW TECHNOLOGY HAS IMPACTED 1142 00:55:08,640 --> 00:55:10,600 HER FAMILY'S QUALITY OF LIFE. 1143 00:55:10,600 --> 00:55:16,120 JEAN, GO AHEAD AND START. 1144 00:55:16,120 --> 00:55:18,120 >>THANK YOU. 1145 00:55:18,120 --> 00:55:20,120 I INTRODUCED MYSELF AND YOU 1146 00:55:20,120 --> 00:55:21,600 HEARD MY FAMILY MEMBERS HAVE 1147 00:55:21,600 --> 00:55:23,360 BEEN IMPACTED BY ALS AND IT'S 1148 00:55:23,360 --> 00:55:24,840 QUITE LIKELY TO BE IN MY FUTURE 1149 00:55:24,840 --> 00:55:29,760 AND I'M SURE IN A NUMBER OF MY 1150 00:55:29,760 --> 00:55:30,280 ATLAS RELATIVES AS WELL. 1151 00:55:30,280 --> 00:55:33,320 AS AN ASIDE I WANTED TO MAKE A 1152 00:55:33,320 --> 00:55:36,200 NOTE I THANK THE NIH FOR BEING 1153 00:55:36,200 --> 00:55:39,000 INTENTIONAL ABOUT INCLUDING US 1154 00:55:39,000 --> 00:55:40,080 JUST LIKE EVERY OTHER ALS 1155 00:55:40,080 --> 00:55:41,160 ORGANIZATION WHEN THE PLAN WAS 1156 00:55:41,160 --> 00:55:46,760 FIRST ANNOUNCED, OUR COMMUNITY 1157 00:55:46,760 --> 00:55:57,280 WAS NOT ALL OUT SPECIFICALLY AND 1158 00:56:00,600 --> 00:56:08,080 THE NIH DOCUMENTED THIS AND 1159 00:56:08,080 --> 00:56:11,240 INCLUDED US AND IT'S A WONDERFUL 1160 00:56:11,240 --> 00:56:11,960 THING AND I THANK THE NIH FOR 1161 00:56:11,960 --> 00:56:22,080 THAT. 1162 00:56:22,840 --> 00:56:25,400 I WANT TO START BY REFERENCING 1163 00:56:25,400 --> 00:56:28,280 AN ANCESTOR WHO DIED IN 1970 1164 00:56:28,280 --> 00:56:31,360 BEFORE I WAS BORN AND A 1165 00:56:31,360 --> 00:56:33,480 GRANDFATHER DIED AT AGE 70 AND 1166 00:56:33,480 --> 00:56:36,240 AS A BRIEF REFLECTION ON WHAT 1167 00:56:36,240 --> 00:56:41,480 HIS QUALITY OF LIFE MUST HAVE 1168 00:56:41,480 --> 00:56:46,840 BEEN MY MOM WHEN TALKING ABOUT 1169 00:56:46,840 --> 00:56:49,880 HIM AND REMEMBERING WHAT IT WAS 1170 00:56:49,880 --> 00:57:00,320 LIKE WHEN HE WAS SICK HIM 1171 00:57:04,120 --> 00:57:05,760 REMEMBERING HIM SITTING ON THE 1172 00:57:05,760 --> 00:57:07,800 COUCH AND NOT PART OF THE 1173 00:57:07,800 --> 00:57:08,680 CONVERSATION AND THINK WHAT IT 1174 00:57:08,680 --> 00:57:12,080 MUST BE LIKE FOR HIM AND MANY 1175 00:57:12,080 --> 00:57:13,520 PEOPLE SUFFERING WITH ALS BEFORE 1176 00:57:13,520 --> 00:57:23,920 THE LAST 20, 30 YEARS. 1177 00:57:31,160 --> 00:57:35,840 >>SO THE NEXT PERSON IN MY 1178 00:57:35,840 --> 00:57:41,800 DIRECT FAMILY WHO HAD ALS WAS MY 1179 00:57:41,800 --> 00:57:44,440 GRANDMOTHER LILLIAN PICTURED 1180 00:57:44,440 --> 00:57:46,120 HERE WITH MY MOTHER AND 1181 00:57:46,120 --> 00:57:47,040 GRANDFATHER. 1182 00:57:47,040 --> 00:57:51,880 SHE WAS DIAGNOSED IN THE LATE 1183 00:57:51,880 --> 00:57:55,480 1980s AND PASSED IN 1990 AND SHE 1184 00:57:55,480 --> 00:58:01,680 WAS 70 AND I WAS 7. 1185 00:58:01,680 --> 00:58:12,240 LILLIAN HAD AAN AUNT TELL ME 1186 00:58:14,960 --> 00:58:17,920 ABOUT THIS MASSIVE POWER CHAIR 1187 00:58:17,920 --> 00:58:19,480 AND A HADN'T SEEN HER IN IT 1188 00:58:19,480 --> 00:58:21,480 BEFORE AND WAS SCARED OF HER. 1189 00:58:21,480 --> 00:58:23,480 SHE WAS TRYING TO GIVE ME CANDY 1190 00:58:23,480 --> 00:58:27,920 OR SOMETHING AND I WAS FREAKED 1191 00:58:27,920 --> 00:58:28,080 OUT. 1192 00:58:28,080 --> 00:58:32,360 BUT APPARENTLY SHE HAD TROUBLE 1193 00:58:32,360 --> 00:58:37,520 USING IT ANYWAY PER MY AUNTS AND 1194 00:58:37,520 --> 00:58:37,760 UNCLES. 1195 00:58:37,760 --> 00:58:40,640 MY GRANDFATHER PICTURED HERE 1196 00:58:40,640 --> 00:58:42,760 WORKED HARD TO MAKE THEIR VERY 1197 00:58:42,760 --> 00:58:44,680 WHEELCHAIR UNFRIENDLY HOME 1198 00:58:44,680 --> 00:58:47,680 ACCESSIBLE WITH VERY LARGE 1199 00:58:47,680 --> 00:58:47,880 RAMPS. 1200 00:58:47,880 --> 00:58:50,400 THE INSTALLED AN ELEVATOR IN 1201 00:58:50,400 --> 00:58:52,880 THEIR HOME. 1202 00:58:52,880 --> 00:58:53,760 I DO KNOW THAT THEIR 1203 00:58:53,760 --> 00:58:56,480 NEIGHBORHOOD WAS NOT ACCESSIBLE. 1204 00:58:56,480 --> 00:58:59,960 IT WAS JUST A BUNCH OF CRAFT 1205 00:58:59,960 --> 00:59:01,640 SLATE SIDEWALK THINGS THAT NO 1206 00:59:01,640 --> 00:59:06,600 WHEELCHAIR WOULD BE ABLE TO 1207 00:59:06,600 --> 00:59:08,480 NAVIGATE AND I CAN'T IMAGINE SHE 1208 00:59:08,480 --> 00:59:12,280 WAS ABLE TO REALLY USE HER POWER 1209 00:59:12,280 --> 00:59:22,520 CHAIR OUTSIDE. 1210 00:59:26,680 --> 00:59:32,440 SO MY MOM CATHY WHO WAS VERY 1211 00:59:32,440 --> 00:59:36,560 WORRIED ABOUT ALS OVER THE YEARS 1212 00:59:36,560 --> 00:59:38,640 AND HAD DISABILITY BEFORE SHE 1213 00:59:38,640 --> 00:59:43,000 GOT A DIAGNOSIS DESPITE 1214 00:59:43,000 --> 00:59:46,040 ADVOCATING THAT FOR SELF WAS 1215 00:59:46,040 --> 00:59:50,480 DIAGNOSED IN 2017 AND PASSED 1216 00:59:50,480 --> 00:59:50,800 QUICKLY. 1217 00:59:50,800 --> 00:59:54,080 SHE MOVED TO A WHEELCHAIR 1218 00:59:54,080 --> 00:59:55,440 FRIENDLY APARTMENT. 1219 00:59:55,440 --> 00:59:57,840 I DON'T KNOW IF HER MOM'S 1220 00:59:57,840 --> 01:00:00,280 EXPERIENCE HIGHLIGHTED THAT WE 1221 01:00:00,280 --> 01:00:06,960 HAD AN UNFRIENDLY WHEELCHAIR 1222 01:00:06,960 --> 01:00:07,960 FRIENDLY HOME. 1223 01:00:07,960 --> 01:00:12,080 AND IT WAS IN A SOMEWHAT 1224 01:00:12,080 --> 01:00:13,600 WHEELCHAIR FRIENDLY NEIGHBORHOOD 1225 01:00:13,600 --> 01:00:15,840 WHEN SHE FINALLY STOPPED WALKING 1226 01:00:15,840 --> 01:00:17,160 AND GOT HER POWER CHAIR SHE 1227 01:00:17,160 --> 01:00:18,040 STARTED TO USE IT. 1228 01:00:18,040 --> 01:00:19,520 YOU CAN SEE PHOTOS HERE. 1229 01:00:19,520 --> 01:00:22,080 THE PHOTO ON THE LEFT -- THEY'RE 1230 01:00:22,080 --> 01:00:32,440 STARTING THE VIDEO. 1231 01:00:52,800 --> 01:00:58,960 I THINK THAT WAS ONE OF THE 1232 01:00:58,960 --> 01:01:00,960 FIRST TIMES SHE USED THE POWER 1233 01:01:00,960 --> 01:01:02,360 CHAIR AND YOU CAN SEE IN SOME 1234 01:01:02,360 --> 01:01:04,360 OTHER PHOTOS, THIS PHOTO I TOOK 1235 01:01:04,360 --> 01:01:07,200 WITH HER ON THE LEFT AT A 1236 01:01:07,200 --> 01:01:10,800 DOCTOR'S APPOINTMENT IN HER NEW 1237 01:01:10,800 --> 01:01:11,560 NEIGHBORHOOD AND BEFORE THE 1238 01:01:11,560 --> 01:01:14,560 APPOINTMENT A FEW DAYS BEFORE WE 1239 01:01:14,560 --> 01:01:15,960 WALKED THERE TO SEE IF WE COULD 1240 01:01:15,960 --> 01:01:18,720 MAKE IT WITHOUT A CAR AND WE 1241 01:01:18,720 --> 01:01:18,880 DID. 1242 01:01:18,880 --> 01:01:22,560 SHE WAS VERY EXCITED AND PROUD. 1243 01:01:22,560 --> 01:01:26,160 ANOTHER PHOTO THERE, MY MOM 1244 01:01:26,160 --> 01:01:28,040 LOVED SHOPPING AND SHE COULD NOT 1245 01:01:28,040 --> 01:01:32,120 SHOP OR DID NOT SHOP AFTER SHE 1246 01:01:32,120 --> 01:01:33,920 WAS DIAGNOSED AND THAT DAY I WAS 1247 01:01:33,920 --> 01:01:38,640 ABLE TO GET HER TO GO TO CVS 1248 01:01:38,640 --> 01:01:44,320 AROUND THE CORNER AND SHE 1249 01:01:44,320 --> 01:01:44,960 ENJOYED LOOKING THROUGH THE 1250 01:01:44,960 --> 01:01:46,840 AISLES ON THAT TRIP. 1251 01:01:46,840 --> 01:01:48,880 I WAS HAPPY WE WERE ABLE TO DO 1252 01:01:48,880 --> 01:01:49,760 THAT. 1253 01:01:49,760 --> 01:01:50,640 THAT'S PROBABLY THE LAST TIME 1254 01:01:50,640 --> 01:01:55,680 SHE WAS ABLE TO GO TO THE STORE. 1255 01:01:55,680 --> 01:01:58,240 SHE DID USE THE POWER CHAIR AND 1256 01:01:58,240 --> 01:02:01,400 DID DIE ONLY 10 MONTHS AFTER 1257 01:02:01,400 --> 01:02:02,640 GETTING IT. 1258 01:02:02,640 --> 01:02:04,640 SO JUST VERY SIMPLY, YOU MIGHT 1259 01:02:04,640 --> 01:02:08,360 SEE IN THE PROGRESSION OF THE 1260 01:02:08,360 --> 01:02:11,000 CIRCUMSTANCES OF MY GREAT 1261 01:02:11,000 --> 01:02:12,520 GRANDFATHER AND GRANDMOTHER THAT 1262 01:02:12,520 --> 01:02:14,720 TECHNOLOGY AND CIRCUMSTANCES CAN 1263 01:02:14,720 --> 01:02:17,720 HAVE PROFOUND AFFECTS ON PEOPLE 1264 01:02:17,720 --> 01:02:21,360 LIVING WITH ALS AND THEIR 1265 01:02:21,360 --> 01:02:21,960 CAREGIVER'S QUALITY OF LIFE. 1266 01:02:21,960 --> 01:02:32,280 THANK YOU VERY MUCH. 1267 01:02:38,520 --> 01:02:42,040 >>I'M GOING TO TALK ABOUT THE 1268 01:02:42,040 --> 01:02:48,200 THEMES WE CAME UP WITH AND THEN 1269 01:02:48,200 --> 01:02:49,760 ATTO PRIORITY. 1270 01:02:49,760 --> 01:02:52,960 QUALITY OF LIFE IS A CRITICAL 1271 01:02:52,960 --> 01:02:54,680 CONCERN WITH PEOPLE LIVING WITH 1272 01:02:54,680 --> 01:02:59,760 ALS AND CAREGIVERS. 1273 01:02:59,760 --> 01:03:04,480 WHEN WE REVIEWED THREE THINGS 1274 01:03:04,480 --> 01:03:06,720 POPPED OUT, MANAGEMENT OF THE 1275 01:03:06,720 --> 01:03:12,280 SYSTEMS AND HOW TO OPTIMIZE 1276 01:03:12,280 --> 01:03:13,400 DAILY LIVING AND COMMUNICATION 1277 01:03:13,400 --> 01:03:15,360 AND MOBILITY AND PROVIDING 1278 01:03:15,360 --> 01:03:18,160 EDUCATION AND DEVELOPMENT OF 1279 01:03:18,160 --> 01:03:21,720 RESOURCES AND TO HELP PEOPLE 1280 01:03:21,720 --> 01:03:23,880 IDENTIFY AND SHARE THE 1281 01:03:23,880 --> 01:03:24,600 RESOURCES. 1282 01:03:24,600 --> 01:03:26,480 WE ALSO WANTED TO RECOGNIZE 1283 01:03:26,480 --> 01:03:29,360 THERE ARE HEALTH CARE 1284 01:03:29,360 --> 01:03:31,040 DISPARITIES IN ALS TO DIRECTLY 1285 01:03:31,040 --> 01:03:41,400 IMPACT QUALITY OF LIFE. 1286 01:03:41,400 --> 01:03:43,600 AND EVERY INDIVIDUAL IS GOING TO 1287 01:03:43,600 --> 01:03:46,360 BE DIFFERENT IN HOW THE MIX 1288 01:03:46,360 --> 01:03:48,520 RESULTS IN THEIR QUALITY OF 1289 01:03:48,520 --> 01:03:48,720 LIFE. 1290 01:03:48,720 --> 01:03:52,000 THERE'S PSYCHOLOGICAL FACTORS. 1291 01:03:52,000 --> 01:03:53,280 THERE'S EXISTENTIAL FACTORS, 1292 01:03:53,280 --> 01:03:55,840 FINDING THE MEANING OF LIFE, 1293 01:03:55,840 --> 01:03:56,480 SPIRITUAL. 1294 01:03:56,480 --> 01:04:00,360 THERE'S EMOTIONAL SUPPORT AND 1295 01:04:00,360 --> 01:04:02,680 THERE'S RESOURCES AVAILABLE LIKE 1296 01:04:02,680 --> 01:04:06,240 JEAN EXEMPLIFIED JUST NOW IN 1297 01:04:06,240 --> 01:04:08,760 SHOWING THE POWER WHEELCHAIR AND 1298 01:04:08,760 --> 01:04:12,680 WHAT DIFFERENCE IT MADE IN HER 1299 01:04:12,680 --> 01:04:13,720 MOTHER'S MOBILITY AND ABILITY TO 1300 01:04:13,720 --> 01:04:15,480 GET AROUND AND THE OTHER POINT 1301 01:04:15,480 --> 01:04:17,440 IS THE QUALITY OF LIFE SHOULDN'T 1302 01:04:17,440 --> 01:04:19,840 BE ASSESSED BY THOSE AROUND BUT 1303 01:04:19,840 --> 01:04:21,080 BY PEOPLE LIVING WITH ALS 1304 01:04:21,080 --> 01:04:28,520 THEMSELVES. 1305 01:04:28,520 --> 01:04:30,560 OFTEN IF WE'RE IN GOOD HEALTH 1306 01:04:30,560 --> 01:04:31,680 WE'LL ESTIMATE THE QUALITY OF 1307 01:04:31,680 --> 01:04:35,160 LIFE AS PEOPLE LIVING WITH A 1308 01:04:35,160 --> 01:04:36,600 LIFE-THREATENING ILLNESS LIKE 1309 01:04:36,600 --> 01:04:38,320 ALS. 1310 01:04:38,320 --> 01:04:40,960 IT'S ALSO IMPORTANT TO RECOGNIZE 1311 01:04:40,960 --> 01:04:42,720 FOR PEOPLE WHO ARE LIVING WITH 1312 01:04:42,720 --> 01:04:45,520 ALS AND MAINTAIN A HIGH QUALITY 1313 01:04:45,520 --> 01:04:49,400 OF LIFE OVER TIME, THERE'S A 1314 01:04:49,400 --> 01:04:50,200 RESPONSE SHIFT IN WHAT BECOMES 1315 01:04:50,200 --> 01:04:51,880 IMPORTANT TO THEIR QUALITY OF 1316 01:04:51,880 --> 01:04:52,120 LIFE. 1317 01:04:52,120 --> 01:04:54,320 SO THE FACTORS THAT WERE 1318 01:04:54,320 --> 01:04:56,040 CRITICAL TO QUALITY OF LIFE MAY 1319 01:04:56,040 --> 01:04:57,920 EVOLVE FROM THOSE DEPENDENT ON 1320 01:04:57,920 --> 01:04:59,360 PHYSICAL FUNCTION LIKE 1321 01:04:59,360 --> 01:05:03,920 EXERCISING AND SO FORTH TO THOSE 1322 01:05:03,920 --> 01:05:05,640 THAT AREN'T MORE INTERPERSONAL 1323 01:05:05,640 --> 01:05:08,120 RELATIONSHIPS OR EXISTENTIAL 1324 01:05:08,120 --> 01:05:10,000 FACTORS AND SO THAT'S IMPORTANT 1325 01:05:10,000 --> 01:05:19,200 FOR EVERYONE TO RECOGNIZE. 1326 01:05:19,200 --> 01:05:20,920 AND WITH METRICS. 1327 01:05:20,920 --> 01:05:22,960 THERE'S NO CONSENSUS ON THE BEST 1328 01:05:22,960 --> 01:05:24,040 QUALITY OF LIFE METRICS. 1329 01:05:24,040 --> 01:05:25,880 THE REAL CHOICE IS DEPENDENT ON 1330 01:05:25,880 --> 01:05:28,920 WHAT YOU'RE LOOKING AT AND THE 1331 01:05:28,920 --> 01:05:29,840 SETTING YOU'RE MEASURING AND 1332 01:05:29,840 --> 01:05:31,920 WHAT YOU'RE STUDYING. 1333 01:05:31,920 --> 01:05:34,920 SO IT'S NOT A SINGLE SIMPLE 1334 01:05:34,920 --> 01:05:38,000 CONCEPT BUT REALLY YOU CAN 1335 01:05:38,000 --> 01:05:39,960 DEFINE IT AS HEALTH RELATED 1336 01:05:39,960 --> 01:05:42,240 WHICH REFLECTS YOUR HEALTH AND 1337 01:05:42,240 --> 01:05:44,360 DEPENDENT ON YOUR PHYSICAL WELL 1338 01:05:44,360 --> 01:05:48,400 BEING AND PHYSICAL FUNCTION OR 1339 01:05:48,400 --> 01:05:50,600 GLOBAL SCALES WHICH MORE RELY ON 1340 01:05:50,600 --> 01:05:52,920 PSYCHOLOGICAL EXISTENTIAL AND 1341 01:05:52,920 --> 01:05:55,440 THOSE SUPPORT FACTORS. 1342 01:05:55,440 --> 01:05:56,280 THEY'RE RELATIVELY INDEPENDENT 1343 01:05:56,280 --> 01:06:00,960 OF PHYSICAL FUNCTION. 1344 01:06:00,960 --> 01:06:03,040 SO WITHIN THESE CATEGORIES, 1345 01:06:03,040 --> 01:06:05,320 HEALTH RELATE AND GLOBAL THERE'S 1346 01:06:05,320 --> 01:06:07,880 INSTRUMENTS SPECIFIC FOR ALS OR 1347 01:06:07,880 --> 01:06:12,560 MORE GENERIC AND ALS SPECIFIC 1348 01:06:12,560 --> 01:06:14,200 INSTRUMENTS WOULD COMMONLY HAVE 1349 01:06:14,200 --> 01:06:17,560 SYMPTOMS THAT ARE PRESENT IN ALS 1350 01:06:17,560 --> 01:06:20,560 LIKE DROOLING AND TROUBLE 1351 01:06:20,560 --> 01:06:28,840 SPEAKING OR SWALLOWING OR MUSS 1352 01:06:28,840 --> 01:06:29,960 CRAMPS AND WOULD HAVE THINGS 1353 01:06:29,960 --> 01:06:32,520 MEASURED THAT ARE LITTLE OF 1354 01:06:32,520 --> 01:06:34,000 IMPORTANCE WHEREAS THE GENERIC 1355 01:06:34,000 --> 01:06:40,320 QUALITY OF LIFE HAS A BROADER 1356 01:06:40,320 --> 01:06:41,680 RANGE OF SYMPTOMS SOME OF WHICH 1357 01:06:41,680 --> 01:06:48,880 WOULD BE RELEVANT AND NOT. 1358 01:06:48,880 --> 01:06:50,600 IN CHOOSING A SCALE YOU HAVE TO 1359 01:06:50,600 --> 01:06:51,560 LOOK AT WHAT YOU'RE MEASURING 1360 01:06:51,560 --> 01:06:53,440 AND LOOKING AT AND WHAT TYPE OF 1361 01:06:53,440 --> 01:07:03,560 SCALE WOULD BE BETTER USED. 1362 01:07:03,560 --> 01:07:05,400 WITH THAT I'M GOING TO HAND IT 1363 01:07:05,400 --> 01:07:10,440 TO DR. PLOWMAN. 1364 01:07:10,440 --> 01:07:15,720 >>THANK YOU SO MUCH. 1365 01:07:15,720 --> 01:07:16,920 IT WAS A WONDERFUL EXPERIENCE 1366 01:07:16,920 --> 01:07:19,840 BEING ON THE WORKING GROUP AND 1367 01:07:19,840 --> 01:07:25,760 GLAD WE HAD JEAN AND LAYNE THAT 1368 01:07:25,760 --> 01:07:26,920 GAVE GOOD INFORMATION IN QUALITY 1369 01:07:26,920 --> 01:07:32,240 OF LIFE AS TERRY MENTIONED. 1370 01:07:32,240 --> 01:07:33,760 WE NEED TO GET IT. 1371 01:07:33,760 --> 01:07:36,280 MANY ARE FAMILIAR WITH THIS 1372 01:07:36,280 --> 01:07:37,960 MODEL THE INTERNATIONAL 1373 01:07:37,960 --> 01:07:40,080 CLASSIFICATION OF FUNCTIONING 1374 01:07:40,080 --> 01:07:41,600 DISABILITY AND HOW MORE COMMONLY 1375 01:07:41,600 --> 01:07:44,680 KNOWN AS THE ICF MODEL WHICH WAS 1376 01:07:44,680 --> 01:07:50,480 PUBLISHED TWO DECADES AGO NOW BY 1377 01:07:50,480 --> 01:07:52,120 THE WORLD HEALTH ORGANIZATION 1378 01:07:52,120 --> 01:07:53,560 AND THIS PSYCHOSOCIAL FRAMEWORK 1379 01:07:53,560 --> 01:07:56,120 DESCRIBES THE INTERACTIONS OF 1380 01:07:56,120 --> 01:08:00,680 INTERNAL AND EXTERNAL FACTORS TO 1381 01:08:00,680 --> 01:08:02,640 AN INDIVIDUAL HEALTH STATUS AND 1382 01:08:02,640 --> 01:08:07,720 HIGHLIGHTS NICELY THE INFLUENCE 1383 01:08:07,720 --> 01:08:11,160 OF THE ENVIRONMENT AND 1384 01:08:11,160 --> 01:08:12,280 ENVIRONMENTAL FACTORS LIKE 1385 01:08:12,280 --> 01:08:13,280 AVAILABLE PRODUCTS AND 1386 01:08:13,280 --> 01:08:14,400 TECHNOLOGY AND ENVIRONMENTAL 1387 01:08:14,400 --> 01:08:17,440 MODIFICATIONS THAT MAY BE MADE. 1388 01:08:17,440 --> 01:08:19,360 SUPPORT INFRASTRUCTURE, SOCIETAL 1389 01:08:19,360 --> 01:08:21,400 ATTITUDES, AVAILABLE SERVICES, 1390 01:08:21,400 --> 01:08:22,320 SYSTEMS AND POLICIES. 1391 01:08:22,320 --> 01:08:27,320 THESE ARE ALL THINGS WE HAVE THE 1392 01:08:27,320 --> 01:08:29,760 POWER TO MODIFY. 1393 01:08:29,760 --> 01:08:31,080 PERSONAL FACTORS CAN INCLUDE 1394 01:08:31,080 --> 01:08:33,520 DEMOGRAPHIC ATTRIBUTES, A 1395 01:08:33,520 --> 01:08:35,400 PERSON'S PREFERRED LIFESTYLE 1396 01:08:35,400 --> 01:08:38,320 HABITS, EDUCATION, SOCIAL 1397 01:08:38,320 --> 01:08:39,840 BACKGROUND, INDIVIDUALIZED 1398 01:08:39,840 --> 01:08:41,360 COOKING STYLE AND MOST 1399 01:08:41,360 --> 01:08:44,480 IMPORTANTLY THE INDIVIDUALIZED 1400 01:08:44,480 --> 01:08:45,480 PRIORITIES THAT CAN DIFFER 1401 01:08:45,480 --> 01:08:48,560 ACROSS PALS. 1402 01:08:48,560 --> 01:08:51,400 THIS UNDERSTANDS AND REMINDS US 1403 01:08:51,400 --> 01:08:53,160 QUALITY OF LIFE CANNOT BE 1404 01:08:53,160 --> 01:08:58,600 INFERRED OR ASSESSED BY A 1405 01:08:58,600 --> 01:09:02,480 CLINICIAN OR OTHERS BUT RATHER 1406 01:09:02,480 --> 01:09:03,880 TRULY DETERMINED BY AN 1407 01:09:03,880 --> 01:09:05,880 INDIVIDUAL WITH ALS OR CAREGIVER 1408 01:09:05,880 --> 01:09:08,280 AND THE QUALITY OF LIFE OF THE 1409 01:09:08,280 --> 01:09:09,360 CAREGIVER THEMSELVES. 1410 01:09:09,360 --> 01:09:10,600 AND ONE THING TO NOTE ON THE 1411 01:09:10,600 --> 01:09:14,680 MODEL IS QUALITY OF LIFE IS NOT 1412 01:09:14,680 --> 01:09:16,000 EXPLICITLY INCLUDED AT ALL IN 1413 01:09:16,000 --> 01:09:16,800 THIS FRAMEWORK. 1414 01:09:16,800 --> 01:09:18,280 IT WOULD HAVE BEEN INFERRED BUT 1415 01:09:18,280 --> 01:09:18,680 NOT INCLUDED. 1416 01:09:18,680 --> 01:09:28,920 NEXT, PLEASE. 1417 01:09:30,280 --> 01:09:32,760 ABOUT A DECADE LATER A MODEL WAS 1418 01:09:32,760 --> 01:09:33,680 CREATED FOR FUNCTIONING AND 1419 01:09:33,680 --> 01:09:36,040 QUALITY OF LIFE ARE INTERTWINED 1420 01:09:36,040 --> 01:09:41,400 AND CENTRAL CONCEPT TO CONSIDER 1421 01:09:41,400 --> 01:09:45,960 IN THE LIVES OF OUR PEOPLE THES 1422 01:09:45,960 --> 01:09:49,760 MODEL DEPICTS LIFE A COMPOSITE 1423 01:09:49,760 --> 01:09:52,200 OF LIFE, FUNCTION AND CONTEXTUAL 1424 01:09:52,200 --> 01:09:53,280 FACTORS AND AS APPRECIATED IN 1425 01:09:53,280 --> 01:09:55,320 THE INDIVIDUAL IT DEPICTS 1426 01:09:55,320 --> 01:09:56,800 QUALITY OF LIFE AS AN OUTCOME OF 1427 01:09:56,800 --> 01:09:58,320 THE INTERCONNECTED AND EVER 1428 01:09:58,320 --> 01:10:06,360 CHANGING INFLUENCES. 1429 01:10:06,360 --> 01:10:08,960 FINALLY AND I LOVE THIS MODEL 1430 01:10:08,960 --> 01:10:12,520 AND LATER THERE WAS A NESTED ICF 1431 01:10:12,520 --> 01:10:15,200 MODEL WITH INTERACTIVE NESTED 1432 01:10:15,200 --> 01:10:16,920 SUBSYSTEMS WITHIN THE OUTER MOST 1433 01:10:16,920 --> 01:10:22,440 SYSTEM WHICH IS NAMELY QUALITY 1434 01:10:22,440 --> 01:10:26,840 OF LIFE AND IT'S DEPICTED AS NON 1435 01:10:26,840 --> 01:10:28,720 LINEAR IN THE CONTINUUM MEANING 1436 01:10:28,720 --> 01:10:30,880 AT ANY GIVEN POINT IN TIME A 1437 01:10:30,880 --> 01:10:32,920 SYSTEM MAY LARGE OR SHRINK IN 1438 01:10:32,920 --> 01:10:37,720 TERMS OF THE INFLUENCE ON OVER 1439 01:10:37,720 --> 01:10:41,760 ALL QUALITY OF LIFE. 1440 01:10:41,760 --> 01:10:50,200 OUR WORKING GROUP UTILIZED THIS 1441 01:10:50,200 --> 01:10:55,000 TO OPTIMIZE QUALITY OF LIFE IN 1442 01:10:55,000 --> 01:10:56,160 PALS AND CALS AND DIFFERENT 1443 01:10:56,160 --> 01:11:00,680 INFLUENTIAL COMPONENTS TO 1444 01:11:00,680 --> 01:11:05,320 INCLUDE SYMPTOM MANAGEMENT 1445 01:11:05,320 --> 01:11:07,120 ACTIVITIES AND PARTICIPATION 1446 01:11:07,120 --> 01:11:09,000 WITH A FOCUS ON OUR FINDINGS 1447 01:11:09,000 --> 01:11:13,560 THAT COMMUNICATION AND MOBILITY 1448 01:11:13,560 --> 01:11:15,880 WERE DEEMED TO BE MOST IMPORTANT 1449 01:11:15,880 --> 01:11:17,760 IN SURVEY RESPONDENTS AND 1450 01:11:17,760 --> 01:11:27,960 FINALLY ENVIRONMENTAL SUPPORT. 1451 01:11:27,960 --> 01:11:36,880 I'LL OVERVIEW THE PRIORITIES. 1452 01:11:36,880 --> 01:11:38,920 UNDER SYMPTOM MANAGEMENT THERE'S 1453 01:11:38,920 --> 01:11:41,000 NEEDS TO BE AN UNDERSTANDING HOW 1454 01:11:41,000 --> 01:11:42,680 PHYSICAL, COGNITIVE AND 1455 01:11:42,680 --> 01:11:44,800 PSYCHOLOGICAL SYMPTOMS OF ALS 1456 01:11:44,800 --> 01:11:45,640 IMPACT QUALITY OF LIFE IN PALS 1457 01:11:45,640 --> 01:11:55,400 AND CALS. 1458 01:11:55,400 --> 01:12:05,920 WE WANT TO LOOK AT STRATEGIES. 1459 01:12:16,040 --> 01:12:17,120 SYMPTOMS IMPACT QUALITY OF LIFE 1460 01:12:17,120 --> 01:12:27,640 AND THE MENTAL WELL BEING OF OF 1461 01:12:30,000 --> 01:12:36,040 NOT ONLY PALS BUT CALS. 1462 01:12:36,040 --> 01:12:37,880 HISTORICAL SYMPTOM MANAGEMENT 1463 01:12:37,880 --> 01:12:39,880 APPROACHES HAVE BEEN REACTIVE IN 1464 01:12:39,880 --> 01:12:45,120 NATURE WHERE THE ALS PROGRESSION 1465 01:12:45,120 --> 01:12:48,720 DECIDES THE DECISION MAKING SUCH 1466 01:12:48,720 --> 01:12:56,360 AS THE COUGH ASSIST WHEN IT 1467 01:12:56,360 --> 01:12:59,400 DROPS TO A THRESHOLD LEVEL AND 1468 01:12:59,400 --> 01:13:01,040 MAKES THEM THE VICTIM AND AS THE 1469 01:13:01,040 --> 01:13:02,320 MERCY OF WHAT IS GOING TO OCCUR 1470 01:13:02,320 --> 01:13:07,560 NEXT. 1471 01:13:07,560 --> 01:13:10,920 AND WE PROPOSE A PROACTIVE 1472 01:13:10,920 --> 01:13:13,200 APPROACH THAT EDUCATES, ENABLES 1473 01:13:13,200 --> 01:13:16,080 AND IMPORTANTLY EMPOWERS PALS 1474 01:13:16,080 --> 01:13:18,040 AND CALS TO MAKE INFORMED, 1475 01:13:18,040 --> 01:13:20,640 EDUCATED AND PROACTIVE DECISIONS 1476 01:13:20,640 --> 01:13:23,640 IN A PERSONALIZED AND 1477 01:13:23,640 --> 01:13:24,880 PATIENT-CENTRIC MODEL WE WOULD 1478 01:13:24,880 --> 01:13:26,000 RECOMMEND FOR STUDY TO OPTIMIZE 1479 01:13:26,000 --> 01:13:36,280 QUALITY OF LIFE. 1480 01:13:36,640 --> 01:13:40,840 WE RECOMMEND MANAGEMENT 1481 01:13:40,840 --> 01:13:42,640 APPROACHES AND WOULD LIKE TO 1482 01:13:42,640 --> 01:13:43,640 QUICKLY HIGHLIGHT EMERGING 1483 01:13:43,640 --> 01:13:45,040 EXAMPLES OF SUCH APPROACHES SO 1484 01:13:45,040 --> 01:13:46,960 WE CAN FOCUS ON SOME OF THE 1485 01:13:46,960 --> 01:13:49,080 EXCITING AND POSITIVE 1486 01:13:49,080 --> 01:13:49,680 ADVANCEMENTS WE HAVE ON THE 1487 01:13:49,680 --> 01:13:53,360 HOERZON. 1488 01:13:53,360 --> 01:13:53,800 HORIZON. 1489 01:13:53,800 --> 01:13:55,920 FIRST I'D LIKE TO HIGHLIGHT 1490 01:13:55,920 --> 01:13:57,880 BEHAVIORAL PROACTIVE EMERGING 1491 01:13:57,880 --> 01:13:59,800 TECHNOLOGY OR OUTCOME AND HERE I 1492 01:13:59,800 --> 01:14:01,560 HIGHLIGHT SOME DATA FROM MY LAB 1493 01:14:01,560 --> 01:14:04,400 LOOKING AT A PROACTIVE 1494 01:14:04,400 --> 01:14:08,040 BEHAVIORAL SYMPTOM MANAGEMENT 1495 01:14:08,040 --> 01:14:10,560 AND PERFORMED AS WELL AS OTHER 1496 01:14:10,560 --> 01:14:13,760 PROGRAMMATIC LINE OF RESEARCH 1497 01:14:13,760 --> 01:14:15,040 INVESTIGATING PROPHYLACTIC 1498 01:14:15,040 --> 01:14:17,000 BREATHING EXERCISES WITH THE 1499 01:14:17,000 --> 01:14:19,080 INTEND TO INCREASE BREATHING, 1500 01:14:19,080 --> 01:14:22,800 AIRWAY DEFENSE AND PHYSIO LOGIC 1501 01:14:22,800 --> 01:14:25,200 CAPACITY AND EARLY EFFECTIVE 1502 01:14:25,200 --> 01:14:25,840 PALS. 1503 01:14:25,840 --> 01:14:29,360 HERE'S A PAL IN MY LAB. 1504 01:14:29,360 --> 01:14:35,520 THIS INDIVIDUAL HAD A BULBAR 1505 01:14:35,520 --> 01:14:38,160 ONSET AND THE PEAK COUGH FLOW 1506 01:14:38,160 --> 01:14:41,520 WAS WELL BELOW THE AGE EXPECTED 1507 01:14:41,520 --> 01:14:41,720 LEVEL. 1508 01:14:41,720 --> 01:14:43,520 THIS IS OVER A TWO-YEAR PERIOD 1509 01:14:43,520 --> 01:14:44,880 AND YOU CAN NOTE HERE IN THIS 1510 01:14:44,880 --> 01:14:49,440 INDIVIDUAL THAT WE WERE ABLE TO 1511 01:14:49,440 --> 01:14:50,960 INCREASE HIS PHYSIOLOGIC 1512 01:14:50,960 --> 01:14:51,760 CAPACITY FOR BREATHING AND 1513 01:14:51,760 --> 01:15:02,080 AIRWAY PROTECTION. 1514 01:15:08,760 --> 01:15:11,160 THERE'S A ROLE OF EARLY 1515 01:15:11,160 --> 01:15:12,320 RESPIRATORY EXERCISES FOR 1516 01:15:12,320 --> 01:15:12,920 QUALITY OF LIFE. 1517 01:15:12,920 --> 01:15:16,600 MORE WORK IS NEEDED IN THIS AREA 1518 01:15:16,600 --> 01:15:18,520 BUT OFFERS PROMISE OF PHYSICAL 1519 01:15:18,520 --> 01:15:19,320 MANAGEMENT THAT ARE COMMON AND 1520 01:15:19,320 --> 01:15:23,320 DEVASTATING IN PALS. 1521 01:15:23,320 --> 01:15:25,000 AN EXAMPLE OF PROGRESS MADE IN 1522 01:15:25,000 --> 01:15:26,600 THE PHARMACOLOGIC SYMPTOM 1523 01:15:26,600 --> 01:15:28,080 MANAGEMENT IS HIGHLIGHTED HERE 1524 01:15:28,080 --> 01:15:30,880 WITH THE 2017 SMITH AND 1525 01:15:30,880 --> 01:15:31,600 COLLEAGUES ARTICLE. 1526 01:15:31,600 --> 01:15:34,800 DR. RICHARD SMITH AND COLLEAGUES 1527 01:15:34,800 --> 01:15:40,320 EXAMINE THE TRIAL FOR A NEW DRUG 1528 01:15:40,320 --> 01:15:46,000 NUEDEXTA IT'S AN FDA APPROVED 1529 01:15:46,000 --> 01:15:49,520 DRUG FOR PBA AND SOME PALS 1530 01:15:49,520 --> 01:15:51,000 STARTED USING THIS AND THERE 1531 01:15:51,000 --> 01:15:53,920 WERE REPORTS ANECDOTALLY THEIR 1532 01:15:53,920 --> 01:15:55,280 SPEECH AND SWALLOWING SEEMED TO 1533 01:15:55,280 --> 01:15:56,440 BE IMPROVING. 1534 01:15:56,440 --> 01:15:58,880 THERE WAS AN ELEGANT CROSSOVER 1535 01:15:58,880 --> 01:16:02,240 DESIGN WITH A WASHOUT PERIOD AND 1536 01:16:02,240 --> 01:16:07,200 NOTED THAT WILL THERE'S A 1537 01:16:07,200 --> 01:16:09,720 SIGNIFICANT IMPROVEMENT ON 1538 01:16:09,720 --> 01:16:12,120 PATIENT REPORTED OUTCOME ON THE 1539 01:16:12,120 --> 01:16:14,480 BULBAR FUNCTIONAL SCALE AND IT 1540 01:16:14,480 --> 01:16:20,000 IMPROVED FOLLOWING A 28-DAY 1541 01:16:20,000 --> 01:16:24,240 TRIAL OF NUEDEXTA. 1542 01:16:24,240 --> 01:16:30,040 THIS IS THE FIRST TIME THE DATA 1543 01:16:30,040 --> 01:16:35,480 IS BEING PRESENTED. 1544 01:16:35,480 --> 01:16:37,600 AND THIS UNDER SCORES THE 1545 01:16:37,600 --> 01:16:39,720 IMPORTANCE OF SMALL PILOT 1546 01:16:39,720 --> 01:16:39,960 FUNDING. 1547 01:16:39,960 --> 01:16:43,840 WE GOT A $170,000 GRANT AND 1548 01:16:43,840 --> 01:16:45,840 PERFORMED A STUDY LOOKING AT AN 1549 01:16:45,840 --> 01:16:49,080 OPEN LABEL SMALL PILOT COHORT OF 1550 01:16:49,080 --> 01:16:54,400 30 INDIVIDUALS THE IMPACT OF A 1551 01:16:54,400 --> 01:16:57,560 30-DAY TRIAL OF NUEDEXTA AND 1552 01:16:57,560 --> 01:16:58,600 THERE'S A PLATFORM PRESENTATION 1553 01:16:58,600 --> 01:17:02,040 NEXT WEEK AND YOU GET A SNEAK 1554 01:17:02,040 --> 01:17:04,000 PEEK AT HERE AND THERE WAS A 1555 01:17:04,000 --> 01:17:04,840 SIGNIFICANT IMPROVEMENT IN THE 1556 01:17:04,840 --> 01:17:07,680 ALS FUNCTIONAL RATING SCALE 1557 01:17:07,680 --> 01:17:10,120 BULBAR SUB SCALE ON AVERAGE 1558 01:17:10,120 --> 01:17:11,680 IMPROVED BY ABOUT ONE PINT OVER 1559 01:17:11,680 --> 01:17:12,760 THE 30-DAY COURSE. 1560 01:17:12,760 --> 01:17:19,720 WHEN WE BROKE IT DOWN, 75% OF 1561 01:17:19,720 --> 01:17:20,480 PARTICIPANTS SIGNIFICANTLY 1562 01:17:20,480 --> 01:17:26,000 IMPROVED AND THEN 4.5% 1563 01:17:26,000 --> 01:17:29,200 MAINTAINED A 12% SCORE OR GOT 1564 01:17:29,200 --> 01:17:30,960 WORSE AND POSITIVE RESULTS AND 1565 01:17:30,960 --> 01:17:32,840 WE LOOKED AT PHYSIOLOGIC 1566 01:17:32,840 --> 01:17:36,400 OUTCOMES AND NOTED SECONDARY 1567 01:17:36,400 --> 01:17:43,720 OUTCOMES OF VIDEO FLEUR OSSCOPY 1568 01:17:43,720 --> 01:17:46,760 AND THIS INCREASED TO 29% 1569 01:17:46,760 --> 01:17:49,680 FOLLOWING THE PHARMACOLOGIC 1570 01:17:49,680 --> 01:17:50,000 INTERVENTION. 1571 01:17:50,000 --> 01:17:52,840 AND THEN FINALLY THERE WAS A 1572 01:17:52,840 --> 01:17:55,120 SPEECH OUTCOME MEASURE THAT 1573 01:17:55,120 --> 01:17:56,680 SIGNIFICANTLY IMPROVED OVER THE 1574 01:17:56,680 --> 01:18:05,920 COURSE OF THE TREATMENT. 1575 01:18:05,920 --> 01:18:07,960 OUR WORKING GROUP RECOMMENDED 1576 01:18:07,960 --> 01:18:09,880 THERE'S A CRITICAL NEED FOR THE 1577 01:18:09,880 --> 01:18:10,960 DEVELOPMENT OF BEST PRACTICES 1578 01:18:10,960 --> 01:18:14,400 FOR SCREENING AND ASSESSMENT IN 1579 01:18:14,400 --> 01:18:17,760 THIS AREA AS WELL AS NEEDED 1580 01:18:17,760 --> 01:18:20,640 MANAGEMENT GUIDELINES. 1581 01:18:20,640 --> 01:18:22,200 MY FINAL SLIDE WE RECOGNIZED 1582 01:18:22,200 --> 01:18:22,920 THERE'S LARGE CAPS IN THE 1583 01:18:22,920 --> 01:18:24,280 ASSESSMENT AND MANAGEMENT OF 1584 01:18:24,280 --> 01:18:26,520 MENTAL HEALTH OF PEOPLE LIVING 1585 01:18:26,520 --> 01:18:27,160 WITH ALS THAT NEED TO BE 1586 01:18:27,160 --> 01:18:29,440 EXPLORED. 1587 01:18:29,440 --> 01:18:30,960 AND THAT SPECIFICALLY ADVANCED 1588 01:18:30,960 --> 01:18:32,600 CARE PLANNING AND END OF LIFE 1589 01:18:32,600 --> 01:18:34,480 ARE NEEDED GREATLY FOR FUTURE 1590 01:18:34,480 --> 01:18:37,080 RESEARCH AND HERE I HIGHLIGHT A 1591 01:18:37,080 --> 01:18:43,960 BUCHL ARTICLE THAT WAS -- A 1592 01:18:43,960 --> 01:18:45,280 BEAUTIFUL ARTICLE THAT WAS 1593 01:18:45,280 --> 01:18:51,600 RECENTLY PUBLISHED I CAN REFER 1594 01:18:51,600 --> 01:18:59,120 YOU TO. 1595 01:18:59,120 --> 01:19:03,360 >>I'M MELANIE FRIED-OKEN AND 1596 01:19:03,360 --> 01:19:09,640 TALK ABOUT MAXIMIZING FUNCTION 1597 01:19:09,640 --> 01:19:10,880 AND ACTIVITIES AND 1598 01:19:10,880 --> 01:19:11,240 PARTICIPATION. 1599 01:19:11,240 --> 01:19:13,000 FIRST, IT'S CRITICAL WE CONDUCT 1600 01:19:13,000 --> 01:19:14,400 RESEARCH TO IDENTIFY 1601 01:19:14,400 --> 01:19:16,800 INTERVENTIONS THAT MAINTAIN 1602 01:19:16,800 --> 01:19:19,280 OPTIMAL FUNCTION ACTIVITIES OF 1603 01:19:19,280 --> 01:19:22,360 DAILY LIVING AND PARTICIPATION 1604 01:19:22,360 --> 01:19:24,280 THROUGHOUT THE COURSE OF 1605 01:19:24,280 --> 01:19:25,400 NEURODEGENERATION. 1606 01:19:25,400 --> 01:19:27,560 SECOND, THAT WE ESTABLISH 1607 01:19:27,560 --> 01:19:30,520 RESEARCH TO DEVELOP AND EVALUATE 1608 01:19:30,520 --> 01:19:32,360 SMART, DURABLE MEDICAL EQUIPMENT 1609 01:19:32,360 --> 01:19:35,280 AND NOVEL TECHNOLOGIES AND THIRD 1610 01:19:35,280 --> 01:19:37,680 THAT WE ESTABLISH RESEARCH TO 1611 01:19:37,680 --> 01:19:39,720 PROPOSE MEANINGFUL METRICS THAT 1612 01:19:39,720 --> 01:19:41,200 MEASURE THE AFFECT OF 1613 01:19:41,200 --> 01:19:41,800 INTERVENTIONS ON QUALITY OF 1614 01:19:41,800 --> 01:19:45,960 LIFE. 1615 01:19:45,960 --> 01:19:53,280 LET'S TALK ABOUT EACH ONE. 1616 01:19:53,280 --> 01:19:59,720 FIRST WE TO DESIGN AND INNERVATE 1617 01:19:59,720 --> 01:20:01,280 AND IT MUST BE BASED ON NEEDS S 1618 01:20:01,280 --> 01:20:05,560 AND THEY NEED TO CONTINUOUSLY 1619 01:20:05,560 --> 01:20:06,240 MONITOR CHANGES IN THE 1620 01:20:06,240 --> 01:20:08,520 ENVIRONMENT AND ACTIVITIES AND 1621 01:20:08,520 --> 01:20:09,800 IN IMPAIRMENT LEVELS. 1622 01:20:09,800 --> 01:20:13,560 SOME OF THESE CAN BE DONE 1623 01:20:13,560 --> 01:20:14,560 TECHNOLOGICALLY SO THERE'S A LOT 1624 01:20:14,560 --> 01:20:18,600 BEING DONE WITH SENSORS RIGHT 1625 01:20:18,600 --> 01:20:20,040 NOW THAT SHOULD BE INCLUDED 1626 01:20:20,040 --> 01:20:25,160 ANYONE ALS ASSESSMENT. 1627 01:20:25,160 --> 01:20:29,360 HERE'S SOME OF THE AREAS WE FIND 1628 01:20:29,360 --> 01:20:31,360 CRITICAL FOR INTERVENTIONS IN 1629 01:20:31,360 --> 01:20:33,520 THE AREA OF MOBILITY, 1630 01:20:33,520 --> 01:20:36,480 ENVIRONMENTAL CONTROL, 1631 01:20:36,480 --> 01:20:37,240 CONTEXT-DEPENDENT COMMUNICATION 1632 01:20:37,240 --> 01:20:40,520 SO BOTH FACE TO FACE AND REMOTE, 1633 01:20:40,520 --> 01:20:43,520 SPEECH AND WRITING AND WE ALL 1634 01:20:43,520 --> 01:20:45,240 KNOW HOW MUCH CONTEXT-DEPENDENT 1635 01:20:45,240 --> 01:20:46,600 COMMUNICATION HAS CHANGED FOR 1636 01:20:46,600 --> 01:20:51,840 ALL OF US WITH TEXTING, E-MAIL 1637 01:20:51,840 --> 01:20:53,160 AND NOT ONLY SITTING IN FRONT OF 1638 01:20:53,160 --> 01:20:56,720 A COMPUTER. 1639 01:20:56,720 --> 01:20:59,040 AND AGAIN, FUNCTIONS SUCH AS 1640 01:20:59,040 --> 01:21:00,760 SPEECH, SWALLOWING, BREATHING 1641 01:21:00,760 --> 01:21:03,040 AND AIRWAY CLEARANCE AS WELL AS 1642 01:21:03,040 --> 01:21:04,640 ACTIVITIES OF DAILY LIVING. 1643 01:21:04,640 --> 01:21:07,280 SO WE NEED TO COME UP WITH 1644 01:21:07,280 --> 01:21:08,800 INNOVATIVE INTERVENTIONS THAT 1645 01:21:08,800 --> 01:21:09,680 ASSESS EACH ONE OF THESE 1646 01:21:09,680 --> 01:21:15,720 CONTINUOUSLY OVER TIME. 1647 01:21:15,720 --> 01:21:18,160 ALL INTERVENTIONS WHATEVER WE 1648 01:21:18,160 --> 01:21:20,560 CHOOSE TO ASSESS AND AFFECT MUST 1649 01:21:20,560 --> 01:21:22,560 BE GUIDED BY PALS AND CALS 1650 01:21:22,560 --> 01:21:24,600 WITHIN THEIR COMMUNITIES FOR 1651 01:21:24,600 --> 01:21:30,280 ACCESSIBLE, INCLUSIVE AND 1652 01:21:30,280 --> 01:21:33,840 EQUITABLE USABLE-CENTERED DESIGN 1653 01:21:33,840 --> 01:21:35,560 AND I'LL USE THE TERM OVER AND 1654 01:21:35,560 --> 01:21:37,240 OVER AND DOING IT IN A 1655 01:21:37,240 --> 01:21:40,120 PHYSICIAN'S OFFICE IS IMPORTANT 1656 01:21:40,120 --> 01:21:44,120 BUT HAVING SOME WAY TO ASSESS 1657 01:21:44,120 --> 01:21:44,800 AND IT WILL AFFECT QUAL OF LIFE 1658 01:21:44,800 --> 01:21:50,160 MOST. 1659 01:21:50,160 --> 01:21:53,320 AND THE SECOND WAS TO DEVELOP 1660 01:21:53,320 --> 01:21:55,000 AND TEST NOVEL AND SMART 1661 01:21:55,000 --> 01:22:04,720 ASSISTIVE TECHNOLOGIES. 1662 01:22:04,720 --> 01:22:06,240 AND MACHINE THEIR FUNCTIONAL 1663 01:22:06,240 --> 01:22:09,040 AFFECTS ON QUALITY OF LIFE AND 1664 01:22:09,040 --> 01:22:10,080 SMART HOME TECHNOLOGIES 1665 01:22:10,080 --> 01:22:11,480 AVAILABLE FOR ALL OF US AND 1666 01:22:11,480 --> 01:22:12,480 WEARABLE TECHNOLOGIES WE CAN USE 1667 01:22:12,480 --> 01:22:13,960 FOR MONITORING. 1668 01:22:13,960 --> 01:22:17,840 SO MANY OF US HAVE CHOSEN TO USE 1669 01:22:17,840 --> 01:22:19,440 ALEXA, FOR EXAMPLE, FOR 1670 01:22:19,440 --> 01:22:21,040 ENVIRONMENTAL MANAGEMENT AND 1671 01:22:21,040 --> 01:22:23,320 ADDING THAT TO THE TOOLBOX OF 1672 01:22:23,320 --> 01:22:26,640 ASSISTIVE TECHNOLOGIES FOR PALS 1673 01:22:26,640 --> 01:22:27,160 IS CRITICAL. 1674 01:22:27,160 --> 01:22:28,160 A LOT OF THESE THINGS ARE 1675 01:22:28,160 --> 01:22:31,000 AVAILABLE ON THE MARKET AND WHAT 1676 01:22:31,000 --> 01:22:35,520 WE MUST DO IS IDENTIFY THE ITEM 1677 01:22:35,520 --> 01:22:36,800 AND THEN MOST IMPORTANTLY FORM 1678 01:22:36,800 --> 01:22:38,680 AN INTERVENTION OR TRAIN PEOPLE 1679 01:22:38,680 --> 01:22:41,840 ON HOW TO USE IT. 1680 01:22:41,840 --> 01:22:43,760 JUST HANDING SOMEONE AN 1681 01:22:43,760 --> 01:22:44,480 ASSISTIVE TECHNOLOGY ISN'T GOING 1682 01:22:44,480 --> 01:22:47,120 TO DO IT. 1683 01:22:47,120 --> 01:22:50,480 WE NEED TO HAVE TREATMENT PLANS 1684 01:22:50,480 --> 01:22:56,000 AND EXPERTS WHO CAN HELP 1685 01:22:56,000 --> 01:22:58,280 IMPLEMENT IN THE COMMUNITY. 1686 01:22:58,280 --> 01:23:00,560 WE NEED TO DESIGN SPECIFIC 1687 01:23:00,560 --> 01:23:03,200 INTERVENTIONS AND ASSISTIVE 1688 01:23:03,200 --> 01:23:05,480 TECHNOLOGIES THAT EXTEND 1689 01:23:05,480 --> 01:23:07,400 FUNCTION IN NOVEL WAYS. 1690 01:23:07,400 --> 01:23:09,320 THIS GOES BACK TO WHAT JEAN 1691 01:23:09,320 --> 01:23:10,560 STARTED US OFF WITH. 1692 01:23:10,560 --> 01:23:14,760 SO FOR OUR NEW TECHNOLOGIES OR 1693 01:23:14,760 --> 01:23:15,600 DURABLE MEDICAL EQUIPMENT 1694 01:23:15,600 --> 01:23:17,520 RESEARCH AND DEVELOPMENT, WE 1695 01:23:17,520 --> 01:23:19,880 NEED TO HAVE AT LEAST THREE 1696 01:23:19,880 --> 01:23:21,480 FUNDAMENTAL DATA SETS THAT ARE 1697 01:23:21,480 --> 01:23:26,920 ACQUIRED OVER TIME. 1698 01:23:26,920 --> 01:23:31,000 THESE ARE IN USER PERFORMANCE. 1699 01:23:31,000 --> 01:23:32,960 SO HOW DOES THE USER INCREASE OR 1700 01:23:32,960 --> 01:23:34,960 WHAT ARE THE CHALLENGES OVER 1701 01:23:34,960 --> 01:23:39,520 TIME FROM NEURODEGENERATION. 1702 01:23:39,520 --> 01:23:40,520 THE DEVICE PERFORMANCE AS WELL 1703 01:23:40,520 --> 01:23:44,040 AS ADAPTATION AND CUSTOMIZATION 1704 01:23:44,040 --> 01:23:44,720 THROUGH MACHINE LEARNING. 1705 01:23:44,720 --> 01:23:46,040 WHAT DOES THAT MEAN? 1706 01:23:46,040 --> 01:23:50,320 IT MEANS AS THE PERSON'S 1707 01:23:50,320 --> 01:23:52,080 FUNCTIONAL SKILLS CHANGE THE 1708 01:23:52,080 --> 01:23:53,640 TECHNOLOGY SHOULD AUTOMATICALLY 1709 01:23:53,640 --> 01:23:54,840 ADJUST AND CHANGE WITH THEM. 1710 01:23:54,840 --> 01:23:59,400 LET ME GIVE YOU SOME EXAMPLES. 1711 01:23:59,400 --> 01:24:01,560 I RECENTLY GOT A NEW CAR BECAUSE 1712 01:24:01,560 --> 01:24:04,120 I NEED THE ASSISTIVE DRIVING 1713 01:24:04,120 --> 01:24:04,720 FEATURES IN THE CAR. 1714 01:24:04,720 --> 01:24:10,360 THOSE SHOULD BE INCLUDED IN 1715 01:24:10,360 --> 01:24:15,600 EVERY WHEELCHAIR. 1716 01:24:15,600 --> 01:24:18,840 SO IF HOME IS WHERE A PAL SPENDS 1717 01:24:18,840 --> 01:24:20,800 THE MAJORITY OF THE TIME THE 1718 01:24:20,800 --> 01:24:21,800 POWER MOBILITY SHOULD BE 1719 01:24:21,800 --> 01:24:23,840 FAMILIAR WITH THE ENTIRE PLAN OF 1720 01:24:23,840 --> 01:24:24,320 THE HOME. 1721 01:24:24,320 --> 01:24:25,840 SHOULD KNOW WHEN YOU'RE GOING TO 1722 01:24:25,840 --> 01:24:29,840 NEED TO MOVE RIGHT OR LEFT. 1723 01:24:29,840 --> 01:24:30,600 CONTEXT-DEPENDENT LEARNING IS 1724 01:24:30,600 --> 01:24:38,560 CRITICAL FOR WHEELCHAIRS. 1725 01:24:38,560 --> 01:24:39,600 AND FOR COMMUNICATION DEVICES, 1726 01:24:39,600 --> 01:24:42,760 WE NEED TO KNOW ALL THE ACCESS 1727 01:24:42,760 --> 01:24:42,960 METHODS. 1728 01:24:42,960 --> 01:24:44,400 THE DEVICE SHOULD LEARN IF 1729 01:24:44,400 --> 01:24:46,440 SOMEONE IS TYPING, WHEN THEY'RE 1730 01:24:46,440 --> 01:24:47,680 MAKING ENOUGH MISTAKES TO SAY 1731 01:24:47,680 --> 01:24:49,200 IT'S TIME TO MOVE TO A DIFFERENT 1732 01:24:49,200 --> 01:24:56,600 ACCESS METHOD. 1733 01:24:56,600 --> 01:24:58,880 MAYBE WE MOVE FROM MOVING ON A 1734 01:24:58,880 --> 01:25:02,080 KEYBOARD TO CHOOSING A MOUSE OR 1735 01:25:02,080 --> 01:25:07,520 JOY STICK AND MOVE THERE TO A 1736 01:25:07,520 --> 01:25:11,200 HEAD MOUSE OR EYE GAZE 1737 01:25:11,200 --> 01:25:11,880 TECHNOLOGY AND THE TECHNOLOGY 1738 01:25:11,880 --> 01:25:13,240 SHOULD HELP IDENTIFY WHEN WE 1739 01:25:13,240 --> 01:25:15,720 NEED TO MOVE TO THAT STATE AND 1740 01:25:15,720 --> 01:25:21,600 HAVE A MECHANISM TO TEACH US HOW 1741 01:25:21,600 --> 01:25:24,320 TO USE THE NEXT ACCESS. 1742 01:25:24,320 --> 01:25:26,520 THAT'S WHAT I MEAN BY MAKING 1743 01:25:26,520 --> 01:25:28,360 SOMETHING SMART AND DETERMINE 1744 01:25:28,360 --> 01:25:29,600 HOW'S THE USER DOING AND WHAT'S 1745 01:25:29,600 --> 01:25:31,320 THE DEVICE NEED TO DO AND HOW 1746 01:25:31,320 --> 01:25:33,480 CAN THE DEVICE BE CUSTOMIZED AND 1747 01:25:33,480 --> 01:25:35,600 ADAPTED BASED ON WHAT THE PERSON 1748 01:25:35,600 --> 01:25:35,880 DOES? 1749 01:25:35,880 --> 01:25:38,160 THIS IS REALLY GOING TO AFFECT 1750 01:25:38,160 --> 01:25:39,880 FOUR THINGS. 1751 01:25:39,880 --> 01:25:43,600 IT'S GOING TO HELP AND INCREASE 1752 01:25:43,600 --> 01:25:45,920 ADOPTION BY PALS. 1753 01:25:45,920 --> 01:25:48,720 IT'S GOING TO DECREASE 1754 01:25:48,720 --> 01:25:49,680 ABANDONMENT BY PALS. 1755 01:25:49,680 --> 01:25:53,600 IT'S GOING TO INCREASE 1756 01:25:53,600 --> 01:25:55,040 PARTICIPATION WHICH IS OUR MAJOR 1757 01:25:55,040 --> 01:25:56,800 GOAL FOR QUALITY OF LIFE AND 1758 01:25:56,800 --> 01:25:58,360 FINALLY, IT'S GOING REDUCE SOME 1759 01:25:58,360 --> 01:26:00,560 OF THE CAREGIVER 1760 01:26:00,560 --> 01:26:01,760 RESPONSIBILITIES BECAUSE THE 1761 01:26:01,760 --> 01:26:03,040 TECHNOLOGY CAN TAKE THAT OVER 1762 01:26:03,040 --> 01:26:05,840 AND THE CAREGIVERS CAN BE 1763 01:26:05,840 --> 01:26:07,840 DEVOTED TO WORKING WITH THE PALS 1764 01:26:07,840 --> 01:26:09,440 INSTEAD OF FIGURING OUT HOW TO 1765 01:26:09,440 --> 01:26:19,720 USE THAT DEVICE. 1766 01:26:20,640 --> 01:26:31,040 THEN OUR THIRD FOR FUNCTION 1767 01:26:32,280 --> 01:26:37,480 ALLIES RESEARCH AND WE NEED 1768 01:26:37,480 --> 01:26:41,680 METRICS AND THESE INCLUDE EASE 1769 01:26:41,680 --> 01:26:44,120 AND USE AND IMPLEMENTATION OF 1770 01:26:44,120 --> 01:26:45,120 ASSIST OF A TECHNOLOGIES AND 1771 01:26:45,120 --> 01:26:46,440 WILL DEPEND ON INDIVIDUALS AND 1772 01:26:46,440 --> 01:26:47,880 THEIR COMFORT LEVEL. 1773 01:26:47,880 --> 01:26:48,160 FLEXIBILITY. 1774 01:26:48,160 --> 01:26:50,560 AND BY THAT I MEAN THE ASSISTIVE 1775 01:26:50,560 --> 01:26:55,640 TECHNOLOGIES NEED TO CHANGE OVER 1776 01:26:55,640 --> 01:26:57,640 TIME SHORT AND LONG-TERM 1777 01:26:57,640 --> 01:26:58,720 EFFECTIVENESS FOR DAILY 1778 01:26:58,720 --> 01:27:01,880 PARTICIPATION AND THAT MEANS IN 1779 01:27:01,880 --> 01:27:02,960 DIFFERENT CONTEXTS WITH 1780 01:27:02,960 --> 01:27:03,600 DIFFERENT PEOPLE. 1781 01:27:03,600 --> 01:27:07,800 WE NEED TO FIND A WAY TO HAVE 1782 01:27:07,800 --> 01:27:10,440 RESULT REDUCTION OF CAREGIVER 1783 01:27:10,440 --> 01:27:11,080 RESPONSIBILITIES THROUGH THE 1784 01:27:11,080 --> 01:27:17,720 ASSISTIVE TECHNOLOGIES SO WE CAN 1785 01:27:17,720 --> 01:27:18,240 MAXIMIZE ACTIVITIES AND 1786 01:27:18,240 --> 01:27:19,920 PARTICIPATION AND THAT SHOULD BE 1787 01:27:19,920 --> 01:27:22,280 THE GOAL OF THE CARE PROVIDERS. 1788 01:27:22,280 --> 01:27:23,800 WE NEED TO INCLUDE USER 1789 01:27:23,800 --> 01:27:25,360 EXPERIENCE AND SATISFACTION 1790 01:27:25,360 --> 01:27:30,880 WITHIN INTERVENTIONS AND 1791 01:27:30,880 --> 01:27:33,000 ASSISTIVE TECHNOLOGIES AND 1792 01:27:33,000 --> 01:27:35,600 FINALLY BY PATIENT-REPORTED 1793 01:27:35,600 --> 01:27:38,720 OUTCOME MEASURES TO INFLUENCE 1794 01:27:38,720 --> 01:27:39,840 EVERYTHING RELATED TO QUALITY OF 1795 01:27:39,840 --> 01:27:40,120 LIFE. 1796 01:27:40,120 --> 01:27:43,760 I WANTED TO MAKE TWO ADDITIONAL 1797 01:27:43,760 --> 01:27:44,040 POINTS. 1798 01:27:44,040 --> 01:27:49,200 YESTERDAY THE TRANSLATIONAL 1799 01:27:49,200 --> 01:27:52,720 RESEARCH GROUP TALKED ABOUT 1800 01:27:52,720 --> 01:27:55,680 LOOKING AT GENES AND PROTEINS. 1801 01:27:55,680 --> 01:27:58,240 I'D LIKE TO MAINTAIN ASSISTIVE 1802 01:27:58,240 --> 01:28:03,280 TECHNOLOGY IS A TRANSLATIONAL 1803 01:28:03,280 --> 01:28:03,560 ACTIVITY. 1804 01:28:03,560 --> 01:28:05,960 THE BRAIN COMPUTER INTERFACE AND 1805 01:28:05,960 --> 01:28:08,760 INSTEAD OF MOVING FROM TEST TUBE 1806 01:28:08,760 --> 01:28:10,040 WE MOVE FROM BRAIN SIGNALS AND 1807 01:28:10,040 --> 01:28:16,080 THEY NEED TO BE TRANSLATED INTO 1808 01:28:16,080 --> 01:28:19,920 FUNCTION AND INTENT. 1809 01:28:19,920 --> 01:28:22,320 THE SAME DISCUSSION HELD 1810 01:28:22,320 --> 01:28:24,160 YESTERDAY ABOUT GENES AND 1811 01:28:24,160 --> 01:28:25,600 PROTEINS CAN BE HELD TODAY AS 1812 01:28:25,600 --> 01:28:28,120 WELL WITH DIFFERENT ASPECTS OF 1813 01:28:28,120 --> 01:28:32,800 ASSISTIVE TECHNOLOGY. 1814 01:28:32,800 --> 01:28:35,880 THOSE WHO WORK IN TRYING TO 1815 01:28:35,880 --> 01:28:36,920 MAXIMIZE FUNCTION AND ARTS 1816 01:28:36,920 --> 01:28:37,840 PASSION THROUGH ASSISTIVE 1817 01:28:37,840 --> 01:28:40,400 TECHNOLOGY, WE OFTEN COME UP 1818 01:28:40,400 --> 01:28:42,320 WITH THE PROOF OF CONCEPT AND 1819 01:28:42,320 --> 01:28:45,640 PROOF OF PRODUCT AND THEN 1820 01:28:45,640 --> 01:28:46,680 PARTNER WITH INDUSTRY TO MOVE 1821 01:28:46,680 --> 01:28:49,760 THOSE PRODUCTS FORWARD. 1822 01:28:49,760 --> 01:28:53,080 LIKE THEY SAID YESTERDAY, EARLY 1823 01:28:53,080 --> 01:28:54,640 DRUG DISCOVERY MAY 10 TO 15 1824 01:28:54,640 --> 01:28:55,680 YEARS TO BRING TO MARKET. 1825 01:28:55,680 --> 01:29:00,360 SOME THINGS WE'RE WORKING ON FOR 1826 01:29:00,360 --> 01:29:03,640 MAXIMIZING ACTIVITIES AND 1827 01:29:03,640 --> 01:29:04,320 PARTICIPATION WILL TAKE AS LONG 1828 01:29:04,320 --> 01:29:05,240 AS WELL. 1829 01:29:05,240 --> 01:29:08,120 THE THING ABOUT MAXIMIZING 1830 01:29:08,120 --> 01:29:08,720 FUNCTION ACTIVITIES AND 1831 01:29:08,720 --> 01:29:10,120 PARTICIPATION IS WE CAN'T DO IT 1832 01:29:10,120 --> 01:29:13,440 WITHOUT PATIENT-REPORTED 1833 01:29:13,440 --> 01:29:16,040 OUTCOMES AND PARTICIPATORY 1834 01:29:16,040 --> 01:29:16,640 ACTION RESEARCH FROM THE PALS 1835 01:29:16,640 --> 01:29:24,080 COMMUNITY. 1836 01:29:24,080 --> 01:29:27,680 THANK YOU. 1837 01:29:27,680 --> 01:29:31,600 >>I'M GOING TO BE INTRODUCING 1838 01:29:31,600 --> 01:29:32,520 PRIORITY THREE WHICH IS 1839 01:29:32,520 --> 01:29:33,240 EVIDENCE-BASED EDUCATIONAL 1840 01:29:33,240 --> 01:29:34,200 RESOURCES AND BEFORE WE JUMP 1841 01:29:34,200 --> 01:29:36,760 INTO OUR BULLETS WELL START WITH 1842 01:29:36,760 --> 01:29:37,960 ANOTHER BEAUTIFUL ANECDOTE FROM 1843 01:29:37,960 --> 01:29:48,080 JEAN. 1844 01:29:49,400 --> 01:29:52,280 >>THERE'S SO MANY THINGS MY MOM 1845 01:29:52,280 --> 01:29:54,920 AND FAMILY MAYBE DID WRONG OR 1846 01:29:54,920 --> 01:29:56,600 DAD THAT COULD HAVE MADE HER 1847 01:29:56,600 --> 01:30:00,360 LIFE BETTER HAD WE DONE WHAT 1848 01:30:00,360 --> 01:30:03,000 EVIDENCE AND PRIOR EXPERIENCES 1849 01:30:03,000 --> 01:30:10,240 OF PEOPLE WOULD HAVE SUGGESTED. 1850 01:30:10,240 --> 01:30:12,400 THE HAD THE POWER CHAIR YOU SAW 1851 01:30:12,400 --> 01:30:14,400 AND ONE THING THAT THESE NEW 1852 01:30:14,400 --> 01:30:18,280 POWER CHAIRS CAN DO OFTEN IS LAY 1853 01:30:18,280 --> 01:30:20,800 FLAT AND ELEVATE SO THAT A 1854 01:30:20,800 --> 01:30:22,600 PERSON WHO CANNOT TRANSFER 1855 01:30:22,600 --> 01:30:24,840 THEMSELVES COULD BE EASILY 1856 01:30:24,840 --> 01:30:25,440 TRANSFERRED IT ANOTHER FLAT 1857 01:30:25,440 --> 01:30:31,480 SURFACE. 1858 01:30:31,480 --> 01:30:34,120 I REMEMBER HAVING A LOT OF 1859 01:30:34,120 --> 01:30:38,320 TROUBLE TRANSFERRING MY MOM. 1860 01:30:38,320 --> 01:30:43,760 WE HAD PAID AIDS THAT HANDLED 1861 01:30:43,760 --> 01:30:45,040 MOST THE TRANSFERS FOR MY MOM 1862 01:30:45,040 --> 01:30:46,840 AND WHO SHE WANTED TO DO IT BUT 1863 01:30:46,840 --> 01:30:48,200 UNDER CIRCUMSTANCES MY HUSBAND 1864 01:30:48,200 --> 01:30:51,920 AND I HAD TO HELP TRANSFER HER 1865 01:30:51,920 --> 01:30:55,160 AND WE HAD A LOT OF TROUBLE. 1866 01:30:55,160 --> 01:30:56,200 I WAS SEEING COMMENTS ABOUT 1867 01:30:56,200 --> 01:30:57,960 USING THE POWER CHAIRS IN THAT 1868 01:30:57,960 --> 01:31:08,920 WAY TO RECLINE AND WE COULMY MO 1869 01:31:11,960 --> 01:31:14,120 RECLINER CHAIR THAT ALSO LAID 1870 01:31:14,120 --> 01:31:16,520 FLAT AND SHE HAD HER BED WE 1871 01:31:16,520 --> 01:31:17,840 COULD HAVE DONE THAT WITH BUT WE 1872 01:31:17,840 --> 01:31:21,480 DIDN'T DO IT AND I WAS THINKING, 1873 01:31:21,480 --> 01:31:23,360 JUST HAVING SOME KIND OF PRIMER 1874 01:31:23,360 --> 01:31:27,800 THAT WAS EASILY ACCESSIBLE AT 1875 01:31:27,800 --> 01:31:29,560 ALL TIMES WHENEVER THAT HAPPENED 1876 01:31:29,560 --> 01:31:30,600 IN THE MIDDLE OF A SATURDAY AND 1877 01:31:30,600 --> 01:31:32,640 WE NEEDED TO TRANSFER HER, WE 1878 01:31:32,640 --> 01:31:37,120 COULD HAVE CONSULTED THAT AND 1879 01:31:37,120 --> 01:31:38,080 REALIZED THAT. 1880 01:31:38,080 --> 01:31:39,280 I WANTED TO ADD ANOTHER FLAVOR 1881 01:31:39,280 --> 01:31:46,120 TO THAT WAS I DID KNOW THAT AND 1882 01:31:46,120 --> 01:31:50,040 ONE OF THE FIRST TIMES I WAS 1883 01:31:50,040 --> 01:31:52,480 TRYING TO TRANSFER HER GETTING 1884 01:31:52,480 --> 01:31:57,720 SURGERY WITH A FEEDING TUBE IN 1885 01:31:57,720 --> 01:31:58,800 THE HOSPITAL WE WENT BACK TO THE 1886 01:31:58,800 --> 01:32:00,440 SURGERY CENTER BEFORE SHE WAS 1887 01:32:00,440 --> 01:32:02,440 GOING GET BROUGHT IN AND I WAS 1888 01:32:02,440 --> 01:32:04,920 GETTING PREPARED LIKE OKAY, MOM, 1889 01:32:04,920 --> 01:32:06,360 WE'RE GOING TO RECLINE THE CHAIR 1890 01:32:06,360 --> 01:32:08,320 AND ELEVATE IT AND I'LL HELP YOU 1891 01:32:08,320 --> 01:32:14,000 MAKE A TRANSPORTER AND WE'LL 1892 01:32:14,000 --> 01:32:17,800 MOVE YOU AND OF COURSE HOSPITALS 1893 01:32:17,800 --> 01:32:19,160 ARE BUSY PLACES AND TWO 1894 01:32:19,160 --> 01:32:21,000 TRANSPORTERS COME IN AND QUICKLY 1895 01:32:21,000 --> 01:32:23,560 CHUCK HER UP ON A BLANKET AND 1896 01:32:23,560 --> 01:32:28,320 TRANSFER HER AND MY MOM WASN'T 1897 01:32:28,320 --> 01:32:32,320 PREPARED AND WASN'T RELAXED. 1898 01:32:32,320 --> 01:32:34,400 I FEEL THAT PROBABLY TO DO IT 1899 01:32:34,400 --> 01:32:35,320 BEST SOMEONE NEEDS TO BE RELAXED 1900 01:32:35,320 --> 01:32:45,480 NOT TENSE. 1901 01:32:46,360 --> 01:32:47,480 MY MOM'S EXPERIENCE WAS I NEVER 1902 01:32:47,480 --> 01:32:49,480 WANT TO DO IT THIS WAY AGAIN AND 1903 01:32:49,480 --> 01:32:50,960 WHEN YOUR MOM TELLS YOU 1904 01:32:50,960 --> 01:32:52,080 SOMETHING LIKE THAT YOU, DON'T 1905 01:32:52,080 --> 01:32:53,800 WANT TO GO AGAINST IT SO I PUT 1906 01:32:53,800 --> 01:32:56,200 IT OUT OF MY MIND WE'D NEVER TRY 1907 01:32:56,200 --> 01:32:58,640 THAT AGAIN THOUGH WE HAD THIS 1908 01:32:58,640 --> 01:32:59,360 WONDERFUL PIECE OF EQUIPMENT WE 1909 01:32:59,360 --> 01:32:59,960 WOULD HAVE BEEN USING IN THE 1910 01:32:59,960 --> 01:33:04,160 HOME. 1911 01:33:04,160 --> 01:33:06,880 PERHAPS HAVING A RESOURCE THAT 1912 01:33:06,880 --> 01:33:08,680 IS READABLE WOULD HAVE MADE 1913 01:33:08,680 --> 01:33:16,240 USING THAT BETTER GOING FORWARD. 1914 01:33:16,240 --> 01:33:16,840 THANK YOU SO MUCH. 1915 01:33:16,840 --> 01:33:27,360 >>SO IN THAT VEIN, WE WANT TO 1916 01:33:27,720 --> 01:33:30,160 IDENTIFY RESOURCES AND USING 1917 01:33:30,160 --> 01:33:31,320 PROFESSIONALS AND RESEARCHERS 1918 01:33:31,320 --> 01:33:34,800 AND WE ALSO WANT TO USE THE 1919 01:33:34,800 --> 01:33:38,160 EXPERTISE OF PERSONS WITH ALS 1920 01:33:38,160 --> 01:33:41,320 AND CAREGIVERS INCLUDING PAID 1921 01:33:41,320 --> 01:33:42,840 CAREGIVERS BECAUSE WE KNOW 1922 01:33:42,840 --> 01:33:45,840 OTHERS HAVE EXPERTISE FROM OTHER 1923 01:33:45,840 --> 01:33:46,040 GROUPS. 1924 01:33:46,040 --> 01:33:48,120 WE ARE ASKING FOR CRATING AND 1925 01:33:48,120 --> 01:33:49,480 DEVELOPING THE LIST IN 1926 01:33:49,480 --> 01:33:51,880 CONJUNCTION WITH ALL THE PLAYERS 1927 01:33:51,880 --> 01:33:54,200 TO DEVELOP THE BEST SET OF 1928 01:33:54,200 --> 01:33:54,720 PRACTICES AND RESOURCE. 1929 01:33:54,720 --> 01:33:56,400 NEXT WE'RE HOPING TO IMPROVE 1930 01:33:56,400 --> 01:33:57,680 ACCESS TO EDUCATION AND 1931 01:33:57,680 --> 01:34:01,720 RESOURCES ABOUT ALS TO ALL THOSE 1932 01:34:01,720 --> 01:34:03,400 IMPACTED BY ALS. 1933 01:34:03,400 --> 01:34:04,800 THE EMPHASIS IS ALL THOSE 1934 01:34:04,800 --> 01:34:05,760 IMPACTED BY ALS. 1935 01:34:05,760 --> 01:34:07,600 ONE OF THE PIECES OUR PRIORITY 1936 01:34:07,600 --> 01:34:09,720 GROUP WITHIN THIS WORKING GROUP 1937 01:34:09,720 --> 01:34:11,040 THOUGHT THROUGH WAS THE FACT 1938 01:34:11,040 --> 01:34:14,760 THAT WE KNOW EVERYONE THAT IS 1939 01:34:14,760 --> 01:34:19,240 BEING IMPACTED BY ALS IS NOT 1940 01:34:19,240 --> 01:34:20,080 BEING IDENTIFIED. 1941 01:34:20,080 --> 01:34:22,440 AND HOW DO WE ENSURE THE 1942 01:34:22,440 --> 01:34:25,240 EDUCATION IS GETTING TO OTHER 1943 01:34:25,240 --> 01:34:27,880 SPACES OTHER THAN THE 1944 01:34:27,880 --> 01:34:29,280 TRADITIONAL ALS CLINIC OR ALSO 1945 01:34:29,280 --> 01:34:30,880 RESEARCH SPACES WHERE PEOPLE GO 1946 01:34:30,880 --> 01:34:36,000 SEEKING FOR CURES. 1947 01:34:36,000 --> 01:34:37,160 WE'RE HOPING IT WILL DISSEMINATE 1948 01:34:37,160 --> 01:34:38,680 THE BEST PRACTICES AND RESOURCE 1949 01:34:38,680 --> 01:34:41,680 FOR CAREGIVERS AND PERSONS WITH 1950 01:34:41,680 --> 01:34:44,280 ALS AND CLINICIANS, ALLIED, 1951 01:34:44,280 --> 01:34:48,000 PROFESSIONALS AND RESEARCHERS 1952 01:34:48,000 --> 01:34:50,120 AND WE KNOW SIMILAR TO THE FIRST 1953 01:34:50,120 --> 01:34:53,240 PRIORITY IT WILL TAKE PLAYERS IN 1954 01:34:53,240 --> 01:34:54,480 CONJUNCTION WITH ONE ANOTHER AND 1955 01:34:54,480 --> 01:34:57,360 US PUSHING BEYOND THE BOUNDS OF 1956 01:34:57,360 --> 01:34:58,440 OUR TRADITIONAL ALS BASIS TO 1957 01:34:58,440 --> 01:34:59,960 MAKE SURE WE'RE IDENTIFYING ALL 1958 01:34:59,960 --> 01:35:08,440 THOSE IMPACTED BY ALS. 1959 01:35:08,440 --> 01:35:10,920 FINALLY, OUR THIRD LARGER 1960 01:35:10,920 --> 01:35:12,280 SUBBULLET FOR EDUCATIONAL 1961 01:35:12,280 --> 01:35:13,680 RESOURCES IS OF THE COMPLIED 1962 01:35:13,680 --> 01:35:14,880 INFORMATION, WE WANT TO ADDRESS 1963 01:35:14,880 --> 01:35:17,960 ALL THE ASPECTS OF CARE FOR 1964 01:35:17,960 --> 01:35:19,920 PERSONS WITH ALS AND ALSO BE 1965 01:35:19,920 --> 01:35:22,000 EXPLICIT ABOUT ENGAGING A 1966 01:35:22,000 --> 01:35:27,400 DIVERSE GROUP OF PEOPLE IMPACTED 1967 01:35:27,400 --> 01:35:32,360 BY ALS AS MENTIONED IN THE 1968 01:35:32,360 --> 01:35:33,520 BEGINNING WE KNOW THERE ARE 1969 01:35:33,520 --> 01:35:35,000 HEALTH CARE AND HEALTH 1970 01:35:35,000 --> 01:35:36,600 DISPARITIES WITHIN THE ALS SPACE 1971 01:35:36,600 --> 01:35:38,920 THAT HAS A LOT TO DO WITH TIME 1972 01:35:38,920 --> 01:35:42,000 TO DIAGNOSIS AND BEING ABLE TO 1973 01:35:42,000 --> 01:35:45,400 ACCESS A CLINIC AND BIASES 1974 01:35:45,400 --> 01:35:47,640 WITHIN CLINICAL SPACES AND 1975 01:35:47,640 --> 01:35:49,560 EXISTING ISSUES. 1976 01:35:49,560 --> 01:35:50,760 IN THE UNITED STATES THAT 1977 01:35:50,760 --> 01:35:54,520 IMPACTS HOW WE UNDERSTAND CARE 1978 01:35:54,520 --> 01:35:56,600 AS A CAPITALIST INDUSTRY. 1979 01:35:56,600 --> 01:35:59,200 BECAUSE OF THAT AND BY COMPILING 1980 01:35:59,200 --> 01:36:00,760 THE INFORMATION WE'RE HOPING TO 1981 01:36:00,760 --> 01:36:04,000 ENGAGE MULTI-DISCIPLINARY CARE 1982 01:36:04,000 --> 01:36:04,800 PRACTICES ABOUT PROMPT DIAGNOSIS 1983 01:36:04,800 --> 01:36:06,960 AND BEST CARE PRACTICES FOR ALL 1984 01:36:06,960 --> 01:36:08,480 ALS CLINICS AND CREATE 1985 01:36:08,480 --> 01:36:10,040 STANDARDIZATION AROUND THAT AND 1986 01:36:10,040 --> 01:36:11,920 BE SPECIFIC TO PERSONS WITH ALS 1987 01:36:11,920 --> 01:36:14,720 AND CAREGIVERS OF ALS ABOUT 1988 01:36:14,720 --> 01:36:16,920 THEIR PERSONAL BEST CARE 1989 01:36:16,920 --> 01:36:18,760 PRACTICES EITHER AROUND 1990 01:36:18,760 --> 01:36:22,200 NUTRITION OR SELF-CARE, ABOUT 1991 01:36:22,200 --> 01:36:26,120 HOW TO FIND JOY AND HAPPINESS IN 1992 01:36:26,120 --> 01:36:27,520 LIFE WHILE LIVING WITH A 1993 01:36:27,520 --> 01:36:28,280 TERMINAL DISEASE. 1994 01:36:28,280 --> 01:36:29,920 WE WANT IT TO BE RESOURCES WE 1995 01:36:29,920 --> 01:36:30,320 COMPILE. 1996 01:36:30,320 --> 01:36:34,840 WE WANT TO ENSURE THERE'S ACCESS 1997 01:36:34,840 --> 01:36:36,360 INFORMATION RELATIVE TO 1998 01:36:36,360 --> 01:36:38,000 PROVIDERS AND PERSONS WITH ALS. 1999 01:36:38,000 --> 01:36:39,360 ONE OF THE THINGS I THINK IS 2000 01:36:39,360 --> 01:36:41,280 VALUABLE ABOUT THE SPACE IS WE 2001 01:36:41,280 --> 01:36:44,160 ARE SMASHING THE HIERARCHY OF 2002 01:36:44,160 --> 01:36:45,240 SIMPLY THE PHYSICIAN OR 2003 01:36:45,240 --> 01:36:47,480 PHYSICIAN SCIENTIST BEING THE 2004 01:36:47,480 --> 01:36:49,640 ONLY EXPERT IN THE ALS SPACE AND 2005 01:36:49,640 --> 01:36:51,680 REALLY VALUING THAT AND HEALTH 2006 01:36:51,680 --> 01:36:53,720 CARE PROVIDERS NEED RESOURCES TO 2007 01:36:53,720 --> 01:36:56,200 HELP SUPPORT THEM AND HOW THEY 2008 01:36:56,200 --> 01:36:56,840 SHARE INFORMATION TO PATIENTS AS 2009 01:36:56,840 --> 01:36:58,200 WELL. 2010 01:36:58,200 --> 01:37:00,480 WE'RE ALSO GOING TO ENSURE WE 2011 01:37:00,480 --> 01:37:04,560 HOPE TO ENSURE THIS IS AN 2012 01:37:04,560 --> 01:37:07,240 INCLUSIVE REVIEW TO ENSURE 2013 01:37:07,240 --> 01:37:08,120 HEALTH EQUITY. 2014 01:37:08,120 --> 01:37:11,880 AND IF WE ARE NOT ACCESSING AND 2015 01:37:11,880 --> 01:37:13,200 IDENTIFYING ALL PERSONS WITH ALS 2016 01:37:13,200 --> 01:37:15,360 THEN IT'S INCUMBENT UPON US AS 2017 01:37:15,360 --> 01:37:16,680 PEOPLE ADVOCATES IN THE 2018 01:37:16,680 --> 01:37:20,960 COMMUNITY TO ENSURE THAT OUR 2019 01:37:20,960 --> 01:37:22,320 REVIEW IS AT HEARING TO HEALTH 2020 01:37:22,320 --> 01:37:24,400 EQUITY STANDARDS AND MAKING SURE 2021 01:37:24,400 --> 01:37:26,880 EVERYONE IS BEING ACCESSED. 2022 01:37:26,880 --> 01:37:28,760 SO IN THAT VEIN WE WANT TO 2023 01:37:28,760 --> 01:37:30,560 EMPHASIZE THAT PEOPLE FROM 2024 01:37:30,560 --> 01:37:31,680 HISTORICALLY UNDER REPRESENTED 2025 01:37:31,680 --> 01:37:34,040 BACKGROUNDS ARE BEING SUPPORTED 2026 01:37:34,040 --> 01:37:36,760 IN THESE TYPES OF RESOURCES. 2027 01:37:36,760 --> 01:37:38,320 THAT SPECIFICALLY INDIVIDUALS 2028 01:37:38,320 --> 01:37:39,920 AND RURAL COMMUNITIES AND 2029 01:37:39,920 --> 01:37:41,800 INDIVIDUALS WHERE ENGLISH IS A 2030 01:37:41,800 --> 01:37:44,960 SECOND LANGUAGE AND NON-MALE 2031 01:37:44,960 --> 01:37:46,080 INDIVIDUALS, PERSONS WITH ALS 2032 01:37:46,080 --> 01:37:47,800 THAT ARE YOUNGER. 2033 01:37:47,800 --> 01:37:51,960 SO YOUNGER THAN 45, 50, THAT 2034 01:37:51,960 --> 01:37:54,920 TYPICAL ALS AGE RANGE WHY WE'RE 2035 01:37:54,920 --> 01:37:56,600 SEEING OUR POPULATION IN THE 2036 01:37:56,600 --> 01:37:58,120 CLINIC AND WHAT MY RESEARCH HAS 2037 01:37:58,120 --> 01:37:59,720 FOCUSSED ON OVER THE LAST DECADE 2038 01:37:59,720 --> 01:38:02,600 IS ENSURING THAT BLACK, 2039 01:38:02,600 --> 01:38:03,560 INDIGENOUS AND PEOPLE OF COLOR 2040 01:38:03,560 --> 01:38:05,160 ARE GETTING THE RESOURCES NOT 2041 01:38:05,160 --> 01:38:07,160 ONLY ABOUT WHAT ALS IS AS A 2042 01:38:07,160 --> 01:38:08,960 DISEASE BUT ALSO ENSURING THAT 2043 01:38:08,960 --> 01:38:12,120 ONCE THEY ARE DIAGNOSED AND ARE 2044 01:38:12,120 --> 01:38:14,240 IN OUR ALS COMMUNITY THAT 2045 01:38:14,240 --> 01:38:15,200 THEY'RE RECEIVING THE 2046 01:38:15,200 --> 01:38:17,040 INFORMATION FOR BOTH SUPPORTING 2047 01:38:17,040 --> 01:38:19,080 THEIR CAREGIVERS AND SUPPORTING 2048 01:38:19,080 --> 01:38:20,120 THEMSELVES IN THE BEST WAYS 2049 01:38:20,120 --> 01:38:20,400 POSSIBLE. 2050 01:38:20,400 --> 01:38:23,560 AND FINALLY, WE'RE HOPING 2051 01:38:23,560 --> 01:38:26,720 RESOURCE, SUGGESTIONS AND BEST S 2052 01:38:26,720 --> 01:38:29,240 WILL ALWAYS ADDRESS THE SOCIAL, 2053 01:38:29,240 --> 01:38:31,080 CULTURAL AND ETHNIC AND ECONOMIC 2054 01:38:31,080 --> 01:38:32,480 BARRIERS THAT MAY EXIST IN 2055 01:38:32,480 --> 01:38:33,680 ACCESSING AND USING THE 2056 01:38:33,680 --> 01:38:33,960 RESOURCE. 2057 01:38:33,960 --> 01:38:35,560 IT'S IMPORTANT TO OVEREMPHASIZE 2058 01:38:35,560 --> 01:38:37,080 THIS POINT BECAUSE A LOT OF THE 2059 01:38:37,080 --> 01:38:42,360 RESOURCES AND TECHNOLOGIES THAT 2060 01:38:42,360 --> 01:38:48,720 WE KNOW ABOUT ALS ARE NOT ALWAYS 2061 01:38:48,720 --> 01:38:50,240 ACCESSIBLE GIVEN A BACKGROUND. 2062 01:38:50,240 --> 01:38:52,600 BECAUSE OF THAT WE WANT TO 2063 01:38:52,600 --> 01:38:54,680 ENSURE OUR EVIDENCE-BASED 2064 01:38:54,680 --> 01:38:57,520 EDUCATIONAL RESOURCES ARE ABLE 2065 01:38:57,520 --> 01:38:59,440 TO BE UTILIZED AND ACCESSED BY 2066 01:38:59,440 --> 01:39:01,040 THESE VARIOUS GROUPS AND AS 2067 01:39:01,040 --> 01:39:04,920 WE'RE COMPILING THIS INFORMATION 2068 01:39:04,920 --> 01:39:09,320 WE HAVE NOT ONLY A HEALTH EQUITY 2069 01:39:09,320 --> 01:39:12,480 LENS IN THINKING THROUGH THE 2070 01:39:12,480 --> 01:39:14,400 BARRIERS BUT ECONOMIC BARRIERS. 2071 01:39:14,400 --> 01:39:16,800 AND I'LL REFLECT ON 2072 01:39:16,800 --> 01:39:18,080 EVIDENCE-BASED EDUCATIONAL 2073 01:39:18,080 --> 01:39:18,680 RESOURCES FROM THE CLINICIAN 2074 01:39:18,680 --> 01:39:28,880 PERSPECTIVE. 2075 01:39:31,760 --> 01:39:34,560 >>THERE ARE A FEW THINGS 2076 01:39:34,560 --> 01:39:38,760 HIGHLIGHT FROM THE CLINICIAN'S 2077 01:39:38,760 --> 01:39:44,400 PERSPECTIVE AN THIS SLIDE THIS 2078 01:39:44,400 --> 01:39:46,760 SUMMARIZES QUICKLY ABOUT THAT 2079 01:39:46,760 --> 01:39:47,560 FROM A CLINICIAN PERSPECTIVE A 2080 01:39:47,560 --> 01:39:52,120 LOT OF THE TOPICS THAT WAS 2081 01:39:52,120 --> 01:39:54,720 REVIEWED BY DR. CARTER EXIST IN 2082 01:39:54,720 --> 01:39:57,800 SOME WAY, SHAPES OR FORMS IN 2083 01:39:57,800 --> 01:39:58,040 PIECES. 2084 01:39:58,040 --> 01:40:00,000 ONE OF THE CHALLENGES IS FIRST 2085 01:40:00,000 --> 01:40:03,400 TO HAVE A WAY TO IMPROVE THE 2086 01:40:03,400 --> 01:40:06,080 EXISTING RESOURCES AND BY WAY OF 2087 01:40:06,080 --> 01:40:07,280 RESEARCH AND THEN TRYING TO 2088 01:40:07,280 --> 01:40:09,480 COMPILE THEM IN ONE SORT OF HUB 2089 01:40:09,480 --> 01:40:11,560 THAT COULD BE EASILY 2090 01:40:11,560 --> 01:40:13,120 DISSEMINATED BOTH ELECTRONICALLY 2091 01:40:13,120 --> 01:40:15,560 AND ALSO IN THE CLINICS AND SO 2092 01:40:15,560 --> 01:40:18,720 THAT WOULD BE THE EDUCATION 2093 01:40:18,720 --> 01:40:19,000 RESOURCE. 2094 01:40:19,000 --> 01:40:21,600 BOTH THAT IS USABLE FROM THE 2095 01:40:21,600 --> 01:40:22,200 CLINICIAN PERSPECTIVE AND FOR 2096 01:40:22,200 --> 01:40:23,440 PEOPLE LIVING THROUGH THE 2097 01:40:23,440 --> 01:40:24,600 DISEASE AND GOING THROUGH THE 2098 01:40:24,600 --> 01:40:25,400 JOURNEY WITH ALS. 2099 01:40:25,400 --> 01:40:27,480 THE SECOND I WANTED TO POINT OUT 2100 01:40:27,480 --> 01:40:30,400 WE COULDN'T SQUEEZE IN IS 2101 01:40:30,400 --> 01:40:31,120 EDUCATION TOWARDS THE HEALTH 2102 01:40:31,120 --> 01:40:32,320 CARE PROVIDERS THEMSELVES. 2103 01:40:32,320 --> 01:40:36,080 THE FIRST IS OBVIOUSLY TRYING TO 2104 01:40:36,080 --> 01:40:39,920 MAKE PROMPT DIAGNOSIS AND THE 2105 01:40:39,920 --> 01:40:41,520 ALS ASSOCIATION HAS CHAMPIONED 2106 01:40:41,520 --> 01:40:43,640 AN INITIATIVE TO HAVE PHYSICIANS 2107 01:40:43,640 --> 01:40:45,160 THINK ABOUT ALS AS SOON AS 2108 01:40:45,160 --> 01:40:48,040 POSSIBLE AND RAISING AWARENESS 2109 01:40:48,040 --> 01:40:49,440 SO THAT PEOPLE THAT ARE 2110 01:40:49,440 --> 01:40:52,000 SUSPECTED TO HAVE ALS COULD BE 2111 01:40:52,000 --> 01:40:53,400 REFERRED TO SPECIALTY CENTERS 2112 01:40:53,400 --> 01:40:54,280 QUICKER SO THE DIAGNOSIS COULD 2113 01:40:54,280 --> 01:40:56,200 BE MADE QUICKER. 2114 01:40:56,200 --> 01:40:59,000 A DELAY IN DIAGNOSIS HAS A BIG 2115 01:40:59,000 --> 01:41:01,120 IMPACT ON QUALITY OF LIVING WITH 2116 01:41:01,120 --> 01:41:04,520 THE DISEASE AND DELAYS TO 2117 01:41:04,520 --> 01:41:05,360 TREATMENT FOR SYMPTOM FUNCTION 2118 01:41:05,360 --> 01:41:06,760 AND MEDICATIONS. 2119 01:41:06,760 --> 01:41:12,000 THE OTHER ASPECT IS ALSO TO 2120 01:41:12,000 --> 01:41:13,520 EDUCATE HEALTH CARE PROVIDERS IN 2121 01:41:13,520 --> 01:41:13,880 COMMUNICATION. 2122 01:41:13,880 --> 01:41:15,960 THIS IS SOMETHING THAT EXISTS 2123 01:41:15,960 --> 01:41:21,240 ALREADY FOR OTHER DISEASE SPACES 2124 01:41:21,240 --> 01:41:23,760 BUT IN ALS PROVIDING THE 2125 01:41:23,760 --> 01:41:24,680 DIAGNOSIS AND HAVING THE 2126 01:41:24,680 --> 01:41:26,240 DISCUSSION IN A WAY THAT'S 2127 01:41:26,240 --> 01:41:28,360 SENSITIVE AND EMPATHETIC CAN 2128 01:41:28,360 --> 01:41:32,880 HELP IMPROV PEOPLE'S FIRST BRUSH 2129 01:41:32,880 --> 01:41:37,160 WITH THE WORDS MYOTROPIC LATERAL 2130 01:41:37,160 --> 01:41:40,240 SCLEROSIS AND HAVE AN IMPACT ON 2131 01:41:40,240 --> 01:41:42,040 THE WAY THE JOURNEY PROCEEDS 2132 01:41:42,040 --> 01:41:43,000 FORWARD THROUGH THE TRANSITIONS 2133 01:41:43,000 --> 01:41:45,920 OF SYMPTOMS AND AS THE DISEASE 2134 01:41:45,920 --> 01:41:47,120 PROGRESSES. 2135 01:41:47,120 --> 01:41:49,880 I THINK THAT COMMUNICATION, 2136 01:41:49,880 --> 01:41:53,760 EDUCATION IS IMPORTANT. 2137 01:41:53,760 --> 01:41:57,440 HOPEFULLY THAT CAN BE 2138 01:41:57,440 --> 01:41:58,280 ENCOMPASSED IN THE EDUCATION 2139 01:41:58,280 --> 01:41:58,560 COMPONENT. 2140 01:41:58,560 --> 01:42:01,360 WITH THAT I'D LIKE TO TURN IT 2141 01:42:01,360 --> 01:42:02,600 OVER TO STEVE FOR THE 2142 01:42:02,600 --> 01:42:04,120 PERSPECTIVE OF A PERSON LIVING 2143 01:42:04,120 --> 01:42:14,280 WITH ALS. 2144 01:42:17,440 --> 01:42:18,280 >>THANK YOU. 2145 01:42:18,280 --> 01:42:19,800 I'VE HAD MY SLIDE UP FOR A WHILE 2146 01:42:19,800 --> 01:42:21,640 SO YOU'VE SEEN THAT AND THIS IS 2147 01:42:21,640 --> 01:42:30,560 FROM A PALS' PERSPECTIVE. 2148 01:42:30,560 --> 01:42:35,480 AS WE HEARD, THE RESEARCH 2149 01:42:35,480 --> 01:42:37,720 COMMUNITY IS NOW IN A POSITION 2150 01:42:37,720 --> 01:42:39,920 TO MAKE THE REALIZATION OF ALS 2151 01:42:39,920 --> 01:42:50,480 AS A LIVABLE DISEASE A REALITY. 2152 01:42:55,360 --> 01:42:57,080 THE TREATMENTS AVAILABLE TODAY 2153 01:42:57,080 --> 01:42:59,080 SHOW PROMISE OF SLOWING THE 2154 01:42:59,080 --> 01:43:00,960 DISEASE AND WITH THAT HAVE 2155 01:43:00,960 --> 01:43:02,800 CAUTIONARY FLAG THAT COME TO MY 2156 01:43:02,800 --> 01:43:04,560 MIND AND HOPEFULLY YOU AS WELL 2157 01:43:04,560 --> 01:43:07,400 IN THAT MAKING ALS A MORE 2158 01:43:07,400 --> 01:43:09,000 LIVABLE DISEASE REQUIRES US TO 2159 01:43:09,000 --> 01:43:12,560 MAKE SURE WE PAY ATTENTION TO 2160 01:43:12,560 --> 01:43:14,000 THOSE FOLKS' QUALITY OF LIFE AS 2161 01:43:14,000 --> 01:43:16,440 THEY LIVE LONGER WITH ALS. 2162 01:43:16,440 --> 01:43:18,400 IT WOULD BE A TRAGEDY TO SEE 2163 01:43:18,400 --> 01:43:21,400 FOLKS LIVING LONGER WITH ALS BUT 2164 01:43:21,400 --> 01:43:23,440 A DIMINISHING QUALITY OF LIFE AS 2165 01:43:23,440 --> 01:43:28,720 THEY GO ALONG THAT CONTINUUM. 2166 01:43:28,720 --> 01:43:30,320 SO SOLUTIONS TO IMPROVE QUALITY 2167 01:43:30,320 --> 01:43:31,800 OF LIFE NEED FURTHER 2168 01:43:31,800 --> 01:43:34,040 UNDERSTANDING AND ANALYSIS AND 2169 01:43:34,040 --> 01:43:36,160 RESULT IN POSITIVE MEANINGFUL 2170 01:43:36,160 --> 01:43:41,240 SOLUTIONS FOR EVERYBODY. 2171 01:43:41,240 --> 01:43:42,960 I ALSO LOOKED AT THIS THROUGH 2172 01:43:42,960 --> 01:43:45,720 THE LENS OF ATTEND GREAT CLINIC 2173 01:43:45,720 --> 01:43:47,520 CARE IN BOSTON AND HOW QUALITY 2174 01:43:47,520 --> 01:43:52,080 OF LIFE IS LOOKED AT WHEN I 2175 01:43:52,080 --> 01:43:53,600 VISIT CLINIC TO SAY THAT WE 2176 01:43:53,600 --> 01:43:56,120 DON'T TALK ABOUT THIS A LOT IN 2177 01:43:56,120 --> 01:43:57,560 MY CLINICAL VISITS. 2178 01:43:57,560 --> 01:44:00,920 I THINK WHAT I'VE COME TO 2179 01:44:00,920 --> 01:44:03,560 REALIZE IS THAT THE ALS FRS 2180 01:44:03,560 --> 01:44:04,880 SCALE AND BREATHING SCORES 2181 01:44:04,880 --> 01:44:07,480 PERHAPS GIVE AN INDICATION OF 2182 01:44:07,480 --> 01:44:10,160 ONE'S QUALITY OF LIFE BUT 2183 01:44:10,160 --> 01:44:13,680 WITHOUT ASKING DIRECT QUESTIONS 2184 01:44:13,680 --> 01:44:15,000 THEY SOMETIMES CREATE 2185 01:44:15,000 --> 01:44:17,400 ASSUMPTIONS AND SO I THINK IT'S 2186 01:44:17,400 --> 01:44:21,720 IMPORTANT THAT WE INCORPORATE 2187 01:44:21,720 --> 01:44:23,520 THE THREE RECOMMENDED PRIORITY 2188 01:44:23,520 --> 01:44:25,480 AREAS TO TALK ABOUT AND 2189 01:44:25,480 --> 01:44:29,040 REIMAGINE STANDARD OF CARE AND 2190 01:44:29,040 --> 01:44:30,000 INFORM RESEARCH PARTNERS. 2191 01:44:30,000 --> 01:44:31,520 THE OTHER THING THAT DAWNED ON 2192 01:44:31,520 --> 01:44:36,120 ME YESTERDAY IN PARTICIPATING IN 2193 01:44:36,120 --> 01:44:38,200 THIS IS THAT A BETTER QUALITY OF 2194 01:44:38,200 --> 01:44:39,400 LIFE OF PATIENTS LIVING WITH 2195 01:44:39,400 --> 01:44:42,120 THIS DISEASE CAN EASILY 2196 01:44:42,120 --> 01:44:43,280 TRANSLATE TO MORE CLINICAL TRIAL 2197 01:44:43,280 --> 01:44:44,480 PARTICIPATION AND RETENTION. 2198 01:44:44,480 --> 01:44:45,400 SO THERE'S A BENEFIT TO THE 2199 01:44:45,400 --> 01:44:55,880 RESEARCH COMMUNITY AS WELL. 2200 01:44:59,400 --> 01:45:05,800 MELANIE TALKED ABOUT THIS AND 2201 01:45:05,800 --> 01:45:08,120 OTHERS AS WELL AND THERE'S BEEN 2202 01:45:08,120 --> 01:45:10,560 TECHNOLOGY IN QUALITY OF LIFE 2203 01:45:10,560 --> 01:45:14,560 AND IMAGINE IN LOU GHERIG WAS 2204 01:45:14,560 --> 01:45:17,760 ALIVE AND GOT TO LOOK AT WHAT'S 2205 01:45:17,760 --> 01:45:19,280 AVAILABLE I THINK HE'D BE 2206 01:45:19,280 --> 01:45:20,000 IMPRESSED WITH THE PROGRESS 2207 01:45:20,000 --> 01:45:20,800 WE'VE MADE. 2208 01:45:20,800 --> 01:45:22,600 THE SCALE OF INNOVATION NEEDS TO 2209 01:45:22,600 --> 01:45:26,360 CHANGE AND NEEDS TO BE FASTER 2210 01:45:26,360 --> 01:45:27,440 WITH BROADER IMPACT. 2211 01:45:27,440 --> 01:45:33,280 WE HEARD THE ALS CLOCK IS 2212 01:45:33,280 --> 01:45:34,800 TICKING AND WAS MENTIONED BY 2213 01:45:34,800 --> 01:45:35,160 SEVERAL PEOPLE. 2214 01:45:35,160 --> 01:45:40,920 ARC OF INNOVATION IS ALSO MOVING 2215 01:45:40,920 --> 01:45:42,520 PRETTY RAPIDLY AS WELL. 2216 01:45:42,520 --> 01:45:44,200 IN MY OBSERVATION AND THE WORK 2217 01:45:44,200 --> 01:45:46,040 I'VE DONE FOR ADVOCATING FOR ALS 2218 01:45:46,040 --> 01:45:47,400 IN THE FIVE YEARS IS WE TEND TO 2219 01:45:47,400 --> 01:45:52,440 BE AT THE BOTTOM OF THE CURVE IN 2220 01:45:52,440 --> 01:45:54,320 GENERAL AND NOT RIDE THIG CURVE. 2221 01:45:54,320 --> 01:45:56,080 HERE'S AN EXAMPLE OF HOW THINGS 2222 01:45:56,080 --> 01:46:01,640 ARE CHANGING RAPIDLY IN WAYS 2223 01:46:01,640 --> 01:46:02,840 THAT WE CAN TAKE LOOK AT 2224 01:46:02,840 --> 01:46:04,640 OPPORTUNITY WITHIN THE CHANGES. 2225 01:46:04,640 --> 01:46:06,080 WE HEAR ABOUT V.R. 2226 01:46:06,080 --> 01:46:09,440 IT'S A RAPIDLY EVOLVING 2227 01:46:09,440 --> 01:46:11,480 TECHNOLOGY AND AS WE STRIVE TO 2228 01:46:11,480 --> 01:46:13,960 WORK FOR A WORLD WITHOUT ALS 2229 01:46:13,960 --> 01:46:16,320 THERE WOULD VERY WELL BE A 2230 01:46:16,320 --> 01:46:21,080 VIRTUAL WORLD WHERE PEOPLE CAN 2231 01:46:21,080 --> 01:46:22,320 PARTICIPATE IN AN PARTICIPATE IN 2232 01:46:22,320 --> 01:46:32,080 WAYS YET TO BE IMAGINED. 2233 01:46:32,080 --> 01:46:34,840 AND ROBOTICS WHICH HASN'T BEEN 2234 01:46:34,840 --> 01:46:37,240 MENTIONED MUCH ARE NOT STAGNANT 2235 01:46:37,240 --> 01:46:37,520 EDEAVORS. 2236 01:46:37,520 --> 01:46:42,960 THEY'RE EVOLVING AND IMPROVING 2237 01:46:42,960 --> 01:46:50,520 AND PATIENTS LIKE ME NEED TO BE 2238 01:46:50,520 --> 01:46:51,120 AFFORDED THE OPPORTUNITIES TO 2239 01:46:51,120 --> 01:47:01,400 UTILIZE THEM. 2240 01:47:01,680 --> 01:47:07,120 WE WENT TO MAKE SURE NEW 2241 01:47:07,120 --> 01:47:08,080 TECHNOLOGIES ARE AFFORDABLE TO 2242 01:47:08,080 --> 01:47:12,080 ALL. 2243 01:47:12,080 --> 01:47:13,840 I LEAVE YOU WITH THE FINAL 2244 01:47:13,840 --> 01:47:16,600 THOUGHT AS I WATCH THE HEROIC OF 2245 01:47:16,600 --> 01:47:18,920 CHANGING THE COURSE OF AN 2246 01:47:18,920 --> 01:47:22,080 ASTEROID, I THOUGHT TO MYSELF, 2247 01:47:22,080 --> 01:47:23,400 GOSH, IMAGINE IF WE CAN DO THAT 2248 01:47:23,400 --> 01:47:25,560 WHAT WE CAN DO TO CHANGE AND 2249 01:47:25,560 --> 01:47:30,960 IMPROVE THE COURSE OF A PERSON 2250 01:47:30,960 --> 01:47:33,880 LIVING WITH ALS'S QUALITY OF 2251 01:47:33,880 --> 01:47:34,080 LIFE. 2252 01:47:34,080 --> 01:47:37,560 I TURN IT BACK TO TERRY AND JEAN 2253 01:47:37,560 --> 01:47:48,040 FOR I GUESS OUR Q&A SECTION. 2254 01:47:51,480 --> 01:47:53,000 >>HOW TO FOR PRESENTING OUR 2255 01:47:53,000 --> 01:47:53,200 WORK. 2256 01:47:53,200 --> 01:47:54,200 >>WE HAD QUESTIONS COME IN 2257 01:47:54,200 --> 01:47:56,440 AHEAD OF TIME AND I KNOW WE'VE 2258 01:47:56,440 --> 01:47:59,160 BEEN WORKING HARD TO COLLATE THE 2259 01:47:59,160 --> 01:48:00,600 QUESTIONS THAT HAVE BEEN JUST 2260 01:48:00,600 --> 01:48:02,320 ANSWERED IN THE CHAT. 2261 01:48:02,320 --> 01:48:03,600 FEEL FREE TO KEEP PLACING THEM 2262 01:48:03,600 --> 01:48:05,520 IN THERE IF YOU HAVE ANY. 2263 01:48:05,520 --> 01:48:06,960 FOR THE FIRST QUESTION I'M GOING 2264 01:48:06,960 --> 01:48:14,400 ADDRESS THIS TO TERRY. 2265 01:48:14,400 --> 01:48:15,960 AND HOW CAN WE DEVELOP A BETTER 2266 01:48:15,960 --> 01:48:18,560 DISEASE QUALITY OF LIFE MEASURE? 2267 01:48:18,560 --> 01:48:21,880 >>THIS QUESTION CAME IN EARLY 2268 01:48:21,880 --> 01:48:27,200 SO I HAD THE OPPORTUNITY TO 2269 01:48:27,200 --> 01:48:31,720 ACTUALLY ASK ZAK THE PERFECT 2270 01:48:31,720 --> 01:48:33,120 PERSON TO ANSWER THAT AND I'LL 2271 01:48:33,120 --> 01:48:34,480 READ BACK THE RESPONSE. 2272 01:48:34,480 --> 01:48:39,320 HE SAID I DON'T THINK WE NEED A 2273 01:48:39,320 --> 01:48:40,360 BETTER INSTRUMENT RATHER WHAT 2274 01:48:40,360 --> 01:48:41,760 WE'RE TRYING TO GAUGE IN A 2275 01:48:41,760 --> 01:48:44,080 PARTICULAR STUDY AND USE THE 2276 01:48:44,080 --> 01:48:46,040 INSTRUMENT THAT'S MOST SUITABLE. 2277 01:48:46,040 --> 01:48:48,280 FOR EXAMPLE, IF WE'RE USING A 2278 01:48:48,280 --> 01:48:49,640 MEDICATION THAT WE BELIEVE WILL 2279 01:48:49,640 --> 01:48:51,280 IMPROVE SLEEP, WE NEED TO ASSESS 2280 01:48:51,280 --> 01:48:53,240 THAT WITH A SLEEP-RELATED 2281 01:48:53,240 --> 01:48:55,200 QUALITY OF LIFE INSTRUMENT. 2282 01:48:55,200 --> 01:48:57,280 IF WE'RE USING ONE THAT IMPROVES 2283 01:48:57,280 --> 01:48:59,280 PAIN OR LOOKING AT PAIN, WE NEED 2284 01:48:59,280 --> 01:49:00,440 A PAIN-RELATED QUALITY OF LIFE 2285 01:49:00,440 --> 01:49:05,040 INSTRUMENT. 2286 01:49:05,040 --> 01:49:06,680 AND IF WE'RE TRYING TO JUDGE 2287 01:49:06,680 --> 01:49:09,400 OVER ALL AFFECTS ON HEALTH WE 2288 01:49:09,400 --> 01:49:16,120 SHOULD GET A QUALITY OF LIFE 2289 01:49:16,120 --> 01:49:17,840 INSTRUMENT. 2290 01:49:17,840 --> 01:49:22,760 AND LOOKING AT ALL ASPECTS OF 2291 01:49:22,760 --> 01:49:28,080 LIFE AND FOR RELATIONSHIPS AND 2292 01:49:28,080 --> 01:49:29,880 SUPPORT AND SPIRITUALITY AND 2293 01:49:29,880 --> 01:49:31,800 EXISTENTIAL FACTORS WE NEED A 2294 01:49:31,800 --> 01:49:33,240 SPECIFIC QUALITY OF LIFE. 2295 01:49:33,240 --> 01:49:35,720 IT'S ABOUT CHOOSING THE RIGHT 2296 01:49:35,720 --> 01:49:37,200 INSTRUMENT, KNOWING WHAT YOUR 2297 01:49:37,200 --> 01:49:38,560 QUESTION IS AND CHOOSING THE 2298 01:49:38,560 --> 01:49:40,560 RIGHT INSTRUMENT AND A 2299 01:49:40,560 --> 01:49:42,840 FUNDAMENTAL QUALITY OF ANY 2300 01:49:42,840 --> 01:49:46,280 INSTRUMENT WE USE IS IT SHOULD 2301 01:49:46,280 --> 01:49:47,720 BE SENSITIVE TO CHANGE FOR THE 2302 01:49:47,720 --> 01:49:52,880 MEASURE WE'RE HOPING TO IMPACT. 2303 01:49:52,880 --> 01:49:54,280 IT'S CHOOSING THE RIGHT 2304 01:49:54,280 --> 01:49:54,920 INSTRUMENT. 2305 01:49:54,920 --> 01:50:02,880 THANK YOU, GENE. 2306 01:50:02,880 --> 01:50:06,320 HOW CAN WE ENSURE BEING A 2307 01:50:06,320 --> 01:50:08,800 GENETIC CARRIER IS NOT A REASON 2308 01:50:08,800 --> 01:50:10,960 FOR LIFE INSURANCE COMPANIES TO 2309 01:50:10,960 --> 01:50:12,240 DENY LONG-TERM INSURANCE AND 2310 01:50:12,240 --> 01:50:14,360 JEAN, THIS ONE'S BACK AT YOU. 2311 01:50:14,360 --> 01:50:24,880 >>THIS IS AN IMPORTANT TOPIC. 2312 01:50:34,080 --> 01:50:35,800 AND THIS AN IMPORTANT REASON 2313 01:50:35,800 --> 01:50:38,600 BEFORE JUMPING INTO PREDICTIVE 2314 01:50:38,600 --> 01:50:39,960 GENETIC TESTING PEOPLE SPEAK TO 2315 01:50:39,960 --> 01:50:41,960 THE GENETIC COUNSELORS AND HAVE 2316 01:50:41,960 --> 01:50:43,360 THE ABILITY TO SPEAK WITH YOU 2317 01:50:43,360 --> 01:50:45,120 ABOUT ALL THIS STUFF TO THE 2318 01:50:45,120 --> 01:50:48,360 PRACTICALITIES OF THE QUESTION. 2319 01:50:48,360 --> 01:50:53,360 THAT'S A POLITICAL QUESTION 2320 01:50:53,360 --> 01:50:55,440 ABOUT WHAT LAWS EXIST. 2321 01:50:55,440 --> 01:50:56,960 INTERESTINGLY, FLORIDA OF ALL 2322 01:50:56,960 --> 01:51:00,800 STATES OUTLAWED GENETIC 2323 01:51:00,800 --> 01:51:01,680 DISCRIMINATION FOR LIFE 2324 01:51:01,680 --> 01:51:03,120 DISABILITY AND LONG-TERM CARE 2325 01:51:03,120 --> 01:51:05,560 INSURANCE IN 2020. 2326 01:51:05,560 --> 01:51:08,040 I HAVE NOT SEEN HEADWINDS OF 2327 01:51:08,040 --> 01:51:08,760 THAT GOING ANYWHERE ELSE BUT 2328 01:51:08,760 --> 01:51:11,600 COULD HAPPEN AND I KNOW WHEN THE 2329 01:51:11,600 --> 01:51:14,200 LAW WAS PASSED THAT PROTECTS 2330 01:51:14,200 --> 01:51:15,600 HEALTH INSURANCE AND EMPLOYMENT 2331 01:51:15,600 --> 01:51:20,680 AT COMPANIES LARGER THAN 15 2332 01:51:20,680 --> 01:51:23,800 PEOPLE BASED ON STATUS THE 2333 01:51:23,800 --> 01:51:25,160 SCIENTIFIC COMMUNITY PLAYED A 2334 01:51:25,160 --> 01:51:26,720 PART IN EDUCATING WHY THAT WAS 2335 01:51:26,720 --> 01:51:28,440 IMPORTANT AND I'M SURE WE CAN 2336 01:51:28,440 --> 01:51:30,920 LEAN ON THE NIH AND OTHER 2337 01:51:30,920 --> 01:51:34,960 SCIENTIFIC LEADERS TO MAKE THAT 2338 01:51:34,960 --> 01:51:38,760 CASE IF CONVERSATIONS ABOUT 2339 01:51:38,760 --> 01:51:40,080 EXPANDING THAT EVER GETS GOING. 2340 01:51:40,080 --> 01:51:50,440 THANK YOU VERY MUCH. 2341 01:51:50,720 --> 01:51:52,840 STEVE, IS INDUSTRY WORKING WITH 2342 01:51:52,840 --> 01:51:55,480 PEOPLE WITH ALS AND CLINICIANS 2343 01:51:55,480 --> 01:51:57,200 FOR SMART ASSISTIVE 2344 01:51:57,200 --> 01:51:57,640 TECHNOLOGIES? 2345 01:51:57,640 --> 01:51:58,960 >>THAT'S MY PASSION AND IT'S 2346 01:51:58,960 --> 01:52:08,440 BEEN MY GOAL SINCE DAY ONE. 2347 01:52:08,440 --> 01:52:12,600 I'VE MADE PROGRESS BUT IT IS 2348 01:52:12,600 --> 01:52:14,040 SLOW BUT I THINK INDUSTRY AND 2349 01:52:14,040 --> 01:52:19,240 HIGH TECH IN PARTICULAR HAS A 2350 01:52:19,240 --> 01:52:23,360 ROLE TO PLAY AND HELPING MAKE 2351 01:52:23,360 --> 01:52:24,360 THIS A REALITY. 2352 01:52:24,360 --> 01:52:26,360 ONE AREA I'VE WATCHED IS THE 2353 01:52:26,360 --> 01:52:27,720 AREA OF HOME AUTOMATION. 2354 01:52:27,720 --> 01:52:33,400 I CONSIDER MYSELF PRETTY TECH 2355 01:52:33,400 --> 01:52:34,960 SAVVY AND SOME OF THIS 2356 01:52:34,960 --> 01:52:36,520 CONNECTING TO HOME AUTOMATION 2357 01:52:36,520 --> 01:52:37,520 CAN BE A CHALLENGE. 2358 01:52:37,520 --> 01:52:41,880 OFTEN TIMES YOU DON'T KNOW WHAT 2359 01:52:41,880 --> 01:52:42,760 TO BUY. 2360 01:52:42,760 --> 01:52:43,560 SOMETIMES YOU PURCHASE THE WRONG 2361 01:52:43,560 --> 01:52:45,840 THING AND WHEN YOU HAVE THE 2362 01:52:45,840 --> 01:52:47,800 WRITE THING IT SIMPLY DOESN'T 2363 01:52:47,800 --> 01:52:48,000 WORK. 2364 01:52:48,000 --> 01:52:51,280 AN EXAMPLE OF INDUSTRY COMING 2365 01:52:51,280 --> 01:52:54,920 TOGETHER, I'VE BEEN FOLLOWING A 2366 01:52:54,920 --> 01:52:58,640 MUCH NEEDED APPROACH AND THAT'S 2367 01:52:58,640 --> 01:53:02,040 A STANDARD ALL MANUFACTURERS 2368 01:53:02,040 --> 01:53:06,920 WHETHER APPLE, AMAZON, GOOGLE, 2369 01:53:06,920 --> 01:53:08,560 MICROSOFT ALL FOLLOW ONE 2370 01:53:08,560 --> 01:53:09,080 STAND 2371 01:53:09,080 --> 01:53:09,360 STANDARD. 2372 01:53:09,360 --> 01:53:11,760 THAT SHOULD HELP SIMPLIFY THOSE 2373 01:53:11,760 --> 01:53:14,400 OF US WHO GET SOMETHING FROM 2374 01:53:14,400 --> 01:53:15,440 AMAZON AND IMPLEMENT IT. 2375 01:53:15,440 --> 01:53:22,080 IT SHOULD BE AS SEAMLESS AS 2376 01:53:22,080 --> 01:53:25,120 WI-FI AND THAT'S THE GOAL AND 2377 01:53:25,120 --> 01:53:29,680 IT'S NOW CALLED MATTER, 2378 01:53:29,680 --> 01:53:31,360 M-A-T-T-E-R AND THEY'RE WORKING 2379 01:53:31,360 --> 01:53:33,080 ON IT THIS MONTH IF YOU WANT TO 2380 01:53:33,080 --> 01:53:34,320 LOOK IT UP. 2381 01:53:34,320 --> 01:53:36,360 ANOTHER EXAMPLE IS I WORKED ON 2382 01:53:36,360 --> 01:53:41,760 ANOTHER GROUP IN TECHNOLOGY AND 2383 01:53:41,760 --> 01:53:48,800 ALS AND WHEN THE NEW TOBY 2384 01:53:48,800 --> 01:53:51,840 SOLUTION CAME OUT ON iPAD, WE 2385 01:53:51,840 --> 01:53:54,040 QUICKLY GOT IT IN THE HANDS OF 2386 01:53:54,040 --> 01:53:55,400 FOLKS WE THOUGHT COULD BENEFIT 2387 01:53:55,400 --> 01:53:57,120 FROM IT AND THERE WAS ONE GREAT 2388 01:53:57,120 --> 01:53:59,080 PERSON WHO WAS VERY INVOLVED IN 2389 01:53:59,080 --> 01:54:03,000 USING IT, LOVED THE SOLUTION BUT 2390 01:54:03,000 --> 01:54:05,640 REALLY HAD TROUBLE WITH THE 2391 01:54:05,640 --> 01:54:08,720 SCROLLI 2392 01:54:08,720 --> 01:54:09,800 SCROLLINGFY -- SCROLLING 2393 01:54:09,800 --> 01:54:10,040 FEATURE. 2394 01:54:10,040 --> 01:54:13,280 I WAS ABLE TO CONNECT THAT PAL 2395 01:54:13,280 --> 01:54:14,880 WITH THE ENGINEER WORKED ON 2396 01:54:14,880 --> 01:54:16,120 DEVELOPING THE PROJECT AND A GOT 2397 01:54:16,120 --> 01:54:18,560 AN E-MAIL THIS WEEK SAYING THEY 2398 01:54:18,560 --> 01:54:22,640 FIXED IT AND THE PAL WHO IT 2399 01:54:22,640 --> 01:54:24,560 IMPACTS COULDN'T BE HAPPIER. 2400 01:54:24,560 --> 01:54:26,680 THOSE ARE TWO EXAMPLES I WANTED 2401 01:54:26,680 --> 01:54:27,840 TO SHARE BUT I KNOW WE HAVE A 2402 01:54:27,840 --> 01:54:38,120 LONG WAY TO GO. 2403 01:54:39,480 --> 01:54:41,000 >>THE LARGE COMPANIES THAT 2404 01:54:41,000 --> 01:54:45,120 STEVE WORKS WITH, MOST OF THEM 2405 01:54:45,120 --> 01:54:50,200 HAVE PROJECTS RELATED TO 2406 01:54:50,200 --> 01:54:51,120 ASSISTIVE TECHNOLOGY. 2407 01:54:51,120 --> 01:54:53,800 FOR EXAMPLE, AND THERE'S A 2408 01:54:53,800 --> 01:54:57,320 PROJECT FOR WHEEL CHAIRS AT 2409 01:54:57,320 --> 01:55:00,920 MICROSOFT RESEARCH AND EUPHORIA 2410 01:55:00,920 --> 01:55:05,280 AND TRANSLATING SPEECH IS A 2411 01:55:05,280 --> 01:55:06,280 GOOGLE PROJECT. 2412 01:55:06,280 --> 01:55:07,520 THERE'S PROJECTS AVAILABLE FROM 2413 01:55:07,520 --> 01:55:09,800 MOST THE BIG COMPANIES AND 2414 01:55:09,800 --> 01:55:18,960 LOOKING FOR PALS PARTICIPATION. 2415 01:55:18,960 --> 01:55:21,400 >>CAN WE EXPECT TO SEE BRAIN 2416 01:55:21,400 --> 01:55:22,880 COMPUTER INTERFACE IN THE 2417 01:55:22,880 --> 01:55:23,480 MARKETPLACE FOR PEOPLE LIVING 2418 01:55:23,480 --> 01:55:31,000 WITH ALS? 2419 01:55:31,000 --> 01:55:33,040 THERE'S TWO TYPES OF BRAIN 2420 01:55:33,040 --> 01:55:33,360 INTERFACE. 2421 01:55:33,360 --> 01:55:36,480 ONE IS IMPLANTABLE WHERE THEY 2422 01:55:36,480 --> 01:55:38,120 PUT A CIRCUIT BOARD ON THE 2423 01:55:38,120 --> 01:55:39,040 SURFACE OF THE BRAIN AND GET 2424 01:55:39,040 --> 01:55:45,400 SIGNALS THAT WAY AND ANOTHER IS 2425 01:55:45,400 --> 01:55:46,800 NON-INVASIVE WHERE A PERSON 2426 01:55:46,800 --> 01:55:52,120 WEARS AN EEG CAP AND PICK UP 2427 01:55:52,120 --> 01:55:53,560 BRAIN SIGNAL THAT WAY. 2428 01:55:53,560 --> 01:55:54,320 BOTH SYSTEMS ARE TRYING TO GET 2429 01:55:54,320 --> 01:56:01,160 THE INTENT OF WHAT THE PERSON'S 2430 01:56:01,160 --> 01:56:02,640 SPEAKING OR CONTROLLING ROBOT OR 2431 01:56:02,640 --> 01:56:06,840 COMPUTER AND THE LIKE. 2432 01:56:06,840 --> 01:56:08,440 LIKE THE TRANSLATIONAL GROUP 2433 01:56:08,440 --> 01:56:09,880 SAID YESTERDAY THAT IT TAKES 2434 01:56:09,880 --> 01:56:11,080 TIME TO BRING SOMETHING TO 2435 01:56:11,080 --> 01:56:12,920 MARKET, THE SAME IS HAPPENING 2436 01:56:12,920 --> 01:56:20,520 WITH THE GROUPS THAT ARE TRYING 2437 01:56:20,520 --> 01:56:23,800 TO ACQUIRE BRAIN SIGNALS AND 2438 01:56:23,800 --> 01:56:24,840 INTERPRET THEM AND MAKE THEM 2439 01:56:24,840 --> 01:56:26,880 FUNCTION. 2440 01:56:26,880 --> 01:56:29,160 IT'S A COMPLICATED TASK. 2441 01:56:29,160 --> 01:56:30,200 THERE ARE SOME SIMPLE SYMPTOMS 2442 01:56:30,200 --> 01:56:30,920 AVAILABLE ON THE MARKET FOR 2443 01:56:30,920 --> 01:56:36,000 PEOPLE TO TRY THAT ARE THE 2444 01:56:36,000 --> 01:56:37,080 NON-INVASIVE SYMPTOMS. 2445 01:56:37,080 --> 01:56:40,680 YOU CAN TRY A NON-INVASIVE 2446 01:56:40,680 --> 01:56:43,120 COMPUTER SYSTEM AND WE HAVE 2447 01:56:43,120 --> 01:56:46,840 EVIDENCE THEY WORK IN A 2448 01:56:46,840 --> 01:56:51,720 COMMUNICATION DEVICE USING 2449 01:56:51,720 --> 01:56:52,040 BCI2000. 2450 01:56:52,040 --> 01:56:54,920 MOST THE WORK IS STILL IN THE 2451 01:56:54,920 --> 01:57:03,680 DEVELOPMENT STAGE AND WILL MOVE 2452 01:57:03,680 --> 01:57:05,160 TOWARDS IMPLEMENTATION IN THE 2453 01:57:05,160 --> 01:57:10,360 FUTURE. 2454 01:57:10,360 --> 01:57:13,760 >>HOW IS QUALITY OF LIFE FOR 2455 01:57:13,760 --> 01:57:14,880 PEOPLE LIVING WITH ALS AFFECTED 2456 01:57:14,880 --> 01:57:19,640 BY RACE AND GENDER? 2457 01:57:19,640 --> 01:57:21,520 >>THINK WE SEE ALS QUALITY OF 2458 01:57:21,520 --> 01:57:27,000 LIFE IMPACT RACE AND HOW PEOPLE 2459 01:57:27,000 --> 01:57:30,200 HAVE ACCESS TO CARE HOW PATIENTS 2460 01:57:30,200 --> 01:57:32,120 ARE BEING DIAGNOSED AND WHERE 2461 01:57:32,120 --> 01:57:36,400 PEOPLE ARE SEEN BY PROVIDERS. 2462 01:57:36,400 --> 01:57:38,400 I DID AN ETHNO GRAPHIC STUDY 2463 01:57:38,400 --> 01:57:43,360 WITH PATIENTS WIN ALS AND MOST 2464 01:57:43,360 --> 01:57:45,520 THE MOST WERE TOLD BY THEIR 2465 01:57:45,520 --> 01:57:47,320 PROVIDER AT SOME POINT THEY SAW 2466 01:57:47,320 --> 01:57:48,840 ALS AS A WHITE DISEASE AND THAT 2467 01:57:48,840 --> 01:57:51,000 BLACK PEOPLE COULD NOT GET IT. 2468 01:57:51,000 --> 01:57:53,440 SO THEY WERE MISSED DIAGNOSED 2469 01:57:53,440 --> 01:57:59,360 NOT BECAUSE OF A DOCTOR'S ERROR, 2470 01:57:59,360 --> 01:58:03,040 THEY WERE TRYING OATH THINGS AND 2471 01:58:03,040 --> 01:58:05,760 FOR SOME IT WAS COMING BACK TO 2472 01:58:05,760 --> 01:58:16,320 RACE AND DELETERIOUS AFFECTS AND 2473 01:58:26,760 --> 01:58:29,120 SOME WERE AFRAID TO GIVE THE 2474 01:58:29,120 --> 01:58:30,080 DIAGNOSIS BECAUSE IT WOULD 2475 01:58:30,080 --> 01:58:31,080 CHANGE THAT PERSON'S LIFE AND 2476 01:58:31,080 --> 01:58:34,160 BECAUSE OF THAT FEAR THEY'RE NOT 2477 01:58:34,160 --> 01:58:35,760 DIAGNOSING PATIENTS SHOWING 2478 01:58:35,760 --> 01:58:37,880 CLEAR UPPER AND LOWER MOTOR 2479 01:58:37,880 --> 01:58:39,000 NEURON SYMPTOMS AND WEEDED OUT 2480 01:58:39,000 --> 01:58:40,160 FROM OTHER DISEASES. 2481 01:58:40,160 --> 01:58:42,960 I ALSO THINK ONE OF THE 2482 01:58:42,960 --> 01:58:43,760 CHALLENGES THAT WE'RE SEEING 2483 01:58:43,760 --> 01:58:46,400 WITH RACE AND GENDER AS IT 2484 01:58:46,400 --> 01:58:51,520 PERTAINS TO QUALITY OF LIFE IS 2485 01:58:51,520 --> 01:58:55,280 THAT PEOPLE ARE NOT GETTING 2486 01:58:55,280 --> 01:58:56,600 ACCESS TO TREATMENT SOON ENOUGH 2487 01:58:56,600 --> 01:59:00,120 AND IF YOU'RE DIAGNOSED YOU 2488 01:59:00,120 --> 01:59:01,880 LIKELY WON'T GET DEVICE TO HELP 2489 01:59:01,880 --> 01:59:03,960 YOU BREATHE OR OTHER ASSISTIVE 2490 01:59:03,960 --> 01:59:05,400 TECHNOLOGIES EVEN THINKING OF 2491 01:59:05,400 --> 01:59:06,560 THE SPEECH TECHNOLOGIES WE 2492 01:59:06,560 --> 01:59:08,360 TALKED ABOUT IF YOU'RE DIAGNOSED 2493 01:59:08,360 --> 01:59:10,080 SO LATE YOU'RE NOT LONGER ABLE 2494 01:59:10,080 --> 01:59:11,360 TO SPEAK, SOME OF THE BANKING 2495 01:59:11,360 --> 01:59:12,640 SYSTEMS AREN'T GOING TO WORK FOR 2496 01:59:12,640 --> 01:59:13,800 YOU IN THE SAME WAY. 2497 01:59:13,800 --> 01:59:18,440 IF YOU DON'T HAVE ACCESS TO 2498 01:59:18,440 --> 01:59:20,120 RESOURCES BECAUSE YOU'RE AT THE 2499 01:59:20,120 --> 01:59:21,040 INTERSECTION OF LOW ECONOMIC 2500 01:59:21,040 --> 01:59:22,880 STATUS AND GENDER AND RACE, IT'S 2501 01:59:22,880 --> 01:59:24,440 GOING TO BE HARD TO ACCESS SOME 2502 01:59:24,440 --> 01:59:25,880 OF THE OTHER DEVICES THAT WILL 2503 01:59:25,880 --> 01:59:27,800 MAKE LIFE EASIER WITH THE 2504 01:59:27,800 --> 01:59:28,720 DISEASE. 2505 01:59:28,720 --> 01:59:30,560 SO I THINK IF WE ARE THINKING 2506 01:59:30,560 --> 01:59:31,960 ABOUT STEVE'S COMMENTS AT THE 2507 01:59:31,960 --> 01:59:34,320 ENDS OF OUR PRESENTATION, IF 2508 01:59:34,320 --> 01:59:35,720 YOU'RE THINKING ABOUT ALS 2509 01:59:35,720 --> 01:59:36,600 BECOMING A LIVABLE DISEASE THEN 2510 01:59:36,600 --> 01:59:38,280 WE HAVE TO MAKE SURE THAT WE'RE 2511 01:59:38,280 --> 01:59:39,760 TAPPING INTO ALL GROUPS THAT ARE 2512 01:59:39,760 --> 01:59:42,400 UNDER SERVED SO WE CAN ENSURE 2513 01:59:42,400 --> 01:59:44,080 THESE INDIVIDUALS ARE THEN ABLE 2514 01:59:44,080 --> 01:59:45,320 TO LIVE LONGER LIVES WITH THE 2515 01:59:45,320 --> 01:59:55,440 ILLNESS. 2516 02:00:13,560 --> 02:00:15,960 >>WHEN WE TALK ABOUT AUTOMATION 2517 02:00:15,960 --> 02:00:17,560 YOU'VE BEEN INVOLVED IN THAT AND 2518 02:00:17,560 --> 02:00:18,960 PERHAPS YOU'D LIKE TO COMMENT A 2519 02:00:18,960 --> 02:00:24,840 LITTLE BIT ON THAT. 2520 02:00:24,840 --> 02:00:31,040 >>I SERVE ON THE ADVISORY 2521 02:00:31,040 --> 02:00:36,920 COMMITTEE AND THEY'RE FOCUSSED 2522 02:00:36,920 --> 02:00:42,720 ON THIS AND STEVE GLEESON WANTS 2523 02:00:42,720 --> 02:00:45,200 VERY MUCH TO PARTICIPATE AND 2524 02:00:45,200 --> 02:00:48,040 THERE'S AN ARMY OF FOLKS THAT 2525 02:00:48,040 --> 02:00:49,800 THAT WANT TO MAKE SURE THERE'S A 2526 02:00:49,800 --> 02:00:51,360 GREAT QUALITY OF LIFE AND 2527 02:00:51,360 --> 02:00:53,480 CONSTANTLY LOOKING FOR SOLUTIONS 2528 02:00:53,480 --> 02:00:57,680 THAT HAVE MEANINGFUL CHANGE. 2529 02:00:57,680 --> 02:01:01,320 THEY DO GREAT WORK I HAVE TO BE 2530 02:01:01,320 --> 02:01:02,840 CAREFUL BECAUSE I'M UNDER N.D.A. 2531 02:01:02,840 --> 02:01:04,040 WITH SOME OF THE WORK WE'RE 2532 02:01:04,040 --> 02:01:06,200 DOING BUT I KNOW THEIR HARD WORK 2533 02:01:06,200 --> 02:01:08,080 WILL SHOW BENEFIT IN A LOT OF 2534 02:01:08,080 --> 02:01:15,920 AREAS THAT ARE INNOVATIVE AND 2535 02:01:15,920 --> 02:01:21,800 YET TO BE REALIZED AND SO STAY 2536 02:01:21,800 --> 02:01:30,920 TUNED AND AND I DON'T WANT TO 2537 02:01:30,920 --> 02:01:32,040 UNDERESTIMATE HOW NEW 2538 02:01:32,040 --> 02:01:33,120 TECHNOLOGIES ARE EXPENSIVE AND 2539 02:01:33,120 --> 02:01:36,040 WE HAVE TO PROVIDE FUNDING AND 2540 02:01:36,040 --> 02:01:37,760 ACCESS TO FOLKS AS THESE 2541 02:01:37,760 --> 02:01:39,520 EXCITING THINGS COME TO MARKET 2542 02:01:39,520 --> 02:01:40,600 BECAUSE IT WOULD BE A SHAME IF 2543 02:01:40,600 --> 02:01:42,280 THEY'RE THERE AND THE BARRIERS 2544 02:01:42,280 --> 02:01:44,120 OF GETTING TO USE THEM IS SIMPLY 2545 02:01:44,120 --> 02:01:45,640 COST. 2546 02:01:45,640 --> 02:01:55,880 >>ABSOLUTELY. 2547 02:01:57,680 --> 02:01:59,920 >>AND PEOPLE HAVE LOOKED AT THE 2548 02:01:59,920 --> 02:02:00,960 TRUE COST OF HAVING ALS AND 2549 02:02:00,960 --> 02:02:03,480 LIVING WITH IT AND THE TRUE COST 2550 02:02:03,480 --> 02:02:04,080 OF THE CLINICIAN WHO IS 2551 02:02:04,080 --> 02:02:13,240 RENDERING THE CARE. 2552 02:02:13,240 --> 02:02:16,480 AND 80% OF THE CLINICS LOSE 2553 02:02:16,480 --> 02:02:17,120 MONEY. 2554 02:02:17,120 --> 02:02:19,160 ONLY 20% OR ONLY 20% KNOW THEY 2555 02:02:19,160 --> 02:02:24,600 BREAK EVEN. 2556 02:02:24,600 --> 02:02:27,120 MORE THAN 90% OF US HAVE TO RELY 2557 02:02:27,120 --> 02:02:37,640 ON NON-PROFIT GROUPS WHO SUPPORT 2558 02:02:47,480 --> 02:02:47,600 US. 2559 02:02:47,600 --> 02:02:49,920 PHILANTHROPY. 2560 02:02:49,920 --> 02:02:55,320 AROUND THIS IS FOR PCORI OR 2561 02:02:55,320 --> 02:02:56,360 PUBLIC HEALTH TO LOOK AT THE 2562 02:02:56,360 --> 02:02:58,040 COST OF HAVING THE DISEASE. 2563 02:02:58,040 --> 02:02:58,760 THANK YOU, STEVE. 2564 02:02:58,760 --> 02:03:00,440 EVERYTHING'S PRETTY COSTLY. 2565 02:03:00,440 --> 02:03:05,920 WE'RE GOING MOVE ON WITH OUR 2566 02:03:05,920 --> 02:03:09,120 NEXT QUESTION I'LL DIRECT THIS 2567 02:03:09,120 --> 02:03:10,200 TO EMILY. 2568 02:03:10,200 --> 02:03:11,560 CAN WE RESEARCH THE ROLE OF 2569 02:03:11,560 --> 02:03:13,440 EXERCISE AND DIET TO MAINTAIN 2570 02:03:13,440 --> 02:03:20,440 AND IMPROVE QUALITY OF LIFE? 2571 02:03:20,440 --> 02:03:21,840 >>I'M HAPPY TO TAKE THE 2572 02:03:21,840 --> 02:03:22,400 QUESTION. 2573 02:03:22,400 --> 02:03:24,080 IT'S A PASSION PROJECT OF MINE. 2574 02:03:24,080 --> 02:03:25,840 AS I BRIEFLY HIGHLIGHTED WHEN WE 2575 02:03:25,840 --> 02:03:27,200 TALKED ABOUT SYMPTOM MANAGEMENT 2576 02:03:27,200 --> 02:03:29,080 APPROACHES FOR THE PRIORITY, 2577 02:03:29,080 --> 02:03:30,840 THIS HISTORICAL REACTIVE 2578 02:03:30,840 --> 02:03:32,600 MANAGEMENT APPROACH, THERE'S A 2579 02:03:32,600 --> 02:03:34,040 FEW ISSUES. 2580 02:03:34,040 --> 02:03:36,840 FIRST IT REALIZE ON THE CLINICAL 2581 02:03:36,840 --> 02:03:38,120 IDENTIFICATION OF A SYSTEM AS WE 2582 02:03:38,120 --> 02:03:39,480 ALL KNOW CAN BE VERY DELAYED IN 2583 02:03:39,480 --> 02:03:46,720 SOME CASES. 2584 02:03:46,720 --> 02:03:49,560 AND GIVEN THE LIKELIHOOD THERE 2585 02:03:49,560 --> 02:03:52,880 WILL BE BREATHING OR SWALLOWING 2586 02:03:52,880 --> 02:03:54,800 PROBLEMS THROUGHOUT THE DISEASE 2587 02:03:54,800 --> 02:03:55,640 PROGRESSION, SITTING BACK AND 2588 02:03:55,640 --> 02:03:58,280 WAITING TO APPLY MANAGEMENT 2589 02:03:58,280 --> 02:04:03,320 APPROACHES IN THE REACTIVE 2590 02:04:03,320 --> 02:04:05,840 MANNER IF THE COUGH DROPS BELOW 2591 02:04:05,840 --> 02:04:08,760 A MEASUREMENT AND LET'S START 2592 02:04:08,760 --> 02:04:12,080 USING COUGH ASSIST, ETCETERA AND 2593 02:04:12,080 --> 02:04:14,000 WAITING FOR THAT INTERVENTION 2594 02:04:14,000 --> 02:04:17,360 PUT PALS AND CALS IN THIS MORE 2595 02:04:17,360 --> 02:04:18,360 THAN NECESSARY VULNERABLE 2596 02:04:18,360 --> 02:04:23,640 SCENARIO WHERE THE DISEASE IS 2597 02:04:23,640 --> 02:04:24,840 DICTATE 2598 02:04:24,840 --> 02:04:26,400 DICTATING AND DOESN'T TAKE 2599 02:04:26,400 --> 02:04:28,320 ADVANTAGE OF BE AN EARLY WINDOW 2600 02:04:28,320 --> 02:04:29,280 OF OPPORTUNITY I'VE NOW SEEN 2601 02:04:29,280 --> 02:04:31,120 TIME AND TIME AGAIN TO INCREASE 2602 02:04:31,120 --> 02:04:34,880 THE FUNCTIONAL OR PHYSIO LOGIC 2603 02:04:34,880 --> 02:04:37,120 RESEARCH AND IMPROVE STRENGTH 2604 02:04:37,120 --> 02:04:39,800 FOR VITAL FUNCTION SUCH AS 2605 02:04:39,800 --> 02:04:41,360 EATING, DRINKING, BREATHING. 2606 02:04:41,360 --> 02:04:44,360 WE TYPICALLY USE THE ANALOGY TO 2607 02:04:44,360 --> 02:04:46,800 PALS AND CALS IN EXPLAINING OUR 2608 02:04:46,800 --> 02:04:48,480 STRATEGY AND WE'RE INCREASING 2609 02:04:48,480 --> 02:04:52,280 THEIR SAVINGS ACCOUNT IF YOU 2610 02:04:52,280 --> 02:04:54,960 WILL PRIOR TO THE INEVITABLE 2611 02:04:54,960 --> 02:04:57,040 DECLINES AND PHYSIOLOGIC 2612 02:04:57,040 --> 02:04:58,280 PROCESSES WE'RE REFERRING TO AND 2613 02:04:58,280 --> 02:05:00,880 GIVING THEM A HIGHER BASELINE OF 2614 02:05:00,880 --> 02:05:02,040 WHICH UNFORTUNATELY THERE WILL 2615 02:05:02,040 --> 02:05:04,000 BE SOME DECLINE FROM THAT AND 2616 02:05:04,000 --> 02:05:07,000 CLUMPING THE SYSTEM UP AND WE 2617 02:05:07,000 --> 02:05:07,920 PREFERRED TO HAND OVER THE 2618 02:05:07,920 --> 02:05:12,120 DECISION MAKING TO THE PATIENT 2619 02:05:12,120 --> 02:05:21,760 WHO WE FIND FEELS EMPOWERING AND 2620 02:05:21,760 --> 02:05:23,440 THE DEVIL'S IN THE DETAIL. 2621 02:05:23,440 --> 02:05:27,920 IT'S NOT A ONE-SIZE FITS ALL. 2622 02:05:27,920 --> 02:05:29,560 I HAVE TO SAY AND WE PUBLISHED 2623 02:05:29,560 --> 02:05:31,080 ABOUT SIX PAPERS IN THE AREA AND 2624 02:05:31,080 --> 02:05:34,360 OTHERS HAVE AS WELL AND THE USE 2625 02:05:34,360 --> 02:05:36,080 OF RESPIRATORY STRENGTH TRAINING 2626 02:05:36,080 --> 02:05:37,480 AND BREATH STACKING AND WE HAVE 2627 02:05:37,480 --> 02:05:38,480 WORK LOOKING AT THE COMBINATION 2628 02:05:38,480 --> 02:05:41,120 OF THE TWO THINGS TO IMPROVE 2629 02:05:41,120 --> 02:05:44,000 LUNG VOLUME AND AIRWAY CLEARANCE 2630 02:05:44,000 --> 02:05:47,360 CAPACITY PRIOR TO EMERGENCE OF 2631 02:05:47,360 --> 02:05:50,920 ANY ISSUES WE BELIEVE IS THE 2632 02:05:50,920 --> 02:05:53,640 BEST APPROACH AND HAVING BEEN A 2633 02:05:53,640 --> 02:05:56,120 PART OF THIS PANEL THE PAST TWO 2634 02:05:56,120 --> 02:05:58,400 DAYS I STARTED THINKING ABOUT IN 2635 02:05:58,400 --> 02:06:00,920 THE GENETIC CARRIERS CAN WE DO 2636 02:06:00,920 --> 02:06:04,080 MORE AND EXERCISING THESE FOLKS 2637 02:06:04,080 --> 02:06:05,240 BECAUSE WE KNOW THERE'LL BE A 2638 02:06:05,240 --> 02:06:10,720 DIFFERENT LINE SO WHY WOULD YOU 2639 02:06:10,720 --> 02:06:19,480 WAIT AND THE SIMILAR ANALOGY IS 2640 02:06:19,480 --> 02:06:29,600 HERE. 2641 02:06:38,280 --> 02:06:38,520 . 2642 02:06:38,520 --> 02:06:40,840 >>THIS IS FROM A QUESTION. 2643 02:06:40,840 --> 02:06:42,120 WE TALK ABOUT SYMPTOMS AND 2644 02:06:42,120 --> 02:06:43,880 FUNCTIONS AND THAT'S IMPORTANT 2645 02:06:43,880 --> 02:06:45,240 BUT IT SEEMS TO EXCLUDE EFFORTS 2646 02:06:45,240 --> 02:06:48,000 FOCUSSED ON WELLNESS, JOY AND 2647 02:06:48,000 --> 02:06:48,920 ENGAGEMENT FOR PEOPLE LIVING 2648 02:06:48,920 --> 02:06:54,400 WITH ALS AT ANY LEVEL OF 2649 02:06:54,400 --> 02:06:55,640 FUNCTION AND SEEMS TO EXCLUDE 2650 02:06:55,640 --> 02:06:57,360 RESEARCH FROM INFECTIONS FROM 2651 02:06:57,360 --> 02:06:59,360 ALS AND HOW CAN WE MAKE SURE 2652 02:06:59,360 --> 02:07:09,480 THOSE ELEMENTS ARE INCLUDED TOO? 2653 02:07:09,480 --> 02:07:10,440 >>WE TALKED ABOUT SYMPTOM 2654 02:07:10,440 --> 02:07:13,200 FUNCTION AND MENTAL HEALTH AND 2655 02:07:13,200 --> 02:07:15,200 PSYCHOLOGICAL ASPECTS EVEN ONCE 2656 02:07:15,200 --> 02:07:18,080 THE PANDEMIC HIT IT'S BEEN 2657 02:07:18,080 --> 02:07:19,920 DIFFICULT FOR EVERYONE INVOLVED 2658 02:07:19,920 --> 02:07:21,240 IN ALS AND PEOPLE PROVIDING CARE 2659 02:07:21,240 --> 02:07:24,840 AND PEOPLE LIVING WITH THE 2660 02:07:24,840 --> 02:07:25,080 DISEASE. 2661 02:07:25,080 --> 02:07:28,320 ONE THE CHALLENGES IS THAT MANY 2662 02:07:28,320 --> 02:07:33,240 OF THE QUALITY OF LIFE 2663 02:07:33,240 --> 02:07:35,400 INSTRUMENTS THAT HAVE BEEN USED 2664 02:07:35,400 --> 02:07:37,720 ARE SOFTEN USED IN CLINICAL 2665 02:07:37,720 --> 02:07:40,440 TRIALS AND TRACK MORE WITH 2666 02:07:40,440 --> 02:07:45,280 HEALTH SPECIFIC ITEMS. 2667 02:07:45,280 --> 02:07:48,200 AND WELL BEING IS AN IMPORTANT 2668 02:07:48,200 --> 02:07:48,840 ASPECT. 2669 02:07:48,840 --> 02:07:51,240 THERE IS SOME IMPORTANCE IN 2670 02:07:51,240 --> 02:07:52,280 UNDERSTANDING WELL BEING IN THE 2671 02:07:52,280 --> 02:07:54,480 CONTEXT OF QUALITY OF LIFE AND 2672 02:07:54,480 --> 02:07:56,320 THAT IS THE EMBEDDED IN OUR 2673 02:07:56,320 --> 02:07:58,400 WORKING GROUP. 2674 02:07:58,400 --> 02:08:00,200 WELL BEING IS SUCH A BROAD TERM. 2675 02:08:00,200 --> 02:08:01,640 WE TALK ABOUT PHYSICAL WELL 2676 02:08:01,640 --> 02:08:04,800 BEING AND THERE'S ASPECTS OF 2677 02:08:04,800 --> 02:08:06,120 ECONOMIC AND SOCIAL WELL BEING 2678 02:08:06,120 --> 02:08:08,240 AND LIFE SATISFACTION AND WELL 2679 02:08:08,240 --> 02:08:10,040 BEING ASSOCIATED WITH ENGAGEMENT 2680 02:08:10,040 --> 02:08:13,840 OF ACTIVITIES AND THERE ARE 2681 02:08:13,840 --> 02:08:19,880 SCALES THROUGH NHANES AND NIEHS 2682 02:08:19,880 --> 02:08:21,320 THAT LOOK AT WELL BEING AND THIS 2683 02:08:21,320 --> 02:08:26,920 IS WITH THE INTENT OF LOOKING AT 2684 02:08:26,920 --> 02:08:28,440 THE SPECIFIC GOAL AND THERE'S 2685 02:08:28,440 --> 02:08:29,160 IMPLEMENTED WITH WHATEVER GOAL 2686 02:08:29,160 --> 02:08:31,360 YOU'RE TRYING TO LOOK FOR. 2687 02:08:31,360 --> 02:08:33,200 I THINK IS AN IMPORTANT ASPECT 2688 02:08:33,200 --> 02:08:35,360 THAT CAN BE EVALUATED MORE THAN 2689 02:08:35,360 --> 02:08:37,880 JUST THE PHYSICAL WHICH A LOT OF 2690 02:08:37,880 --> 02:08:38,800 OUR EFFORTS ESPECIALLY IN 2691 02:08:38,800 --> 02:08:44,000 RESEARCH HAVE BEEN FOCUSSED ON. 2692 02:08:44,000 --> 02:08:47,440 THE SECOND POINT AND THIS TAILS 2693 02:08:47,440 --> 02:08:51,800 IN WITH THE HEALTH ECONOMIC 2694 02:08:51,800 --> 02:08:54,120 IMPACT OF LIVING WITH ALS. 2695 02:08:54,120 --> 02:08:58,200 IT MIGHT BE THAT WE INCORPORATED 2696 02:08:58,200 --> 02:09:02,240 THE QUALITY OF LIFE SCOPE OR 2697 02:09:02,240 --> 02:09:06,680 THIS COULD BE BETTER SUITED IN 2698 02:09:06,680 --> 02:09:08,160 MAKING IMPROVEMENTS IN RESEARCH 2699 02:09:08,160 --> 02:09:12,120 AND OFTEN IN CLINICAL TRIALS 2700 02:09:12,120 --> 02:09:13,720 THERE'S COLLECTION OF 2701 02:09:13,720 --> 02:09:15,640 HOSPITALIZATION AND FALLS AND IT 2702 02:09:15,640 --> 02:09:17,400 RELATES TO AN INTERVENTION OR 2703 02:09:17,400 --> 02:09:18,920 EXPERIMENTAL THERAPY AND THAT'S 2704 02:09:18,920 --> 02:09:20,720 TO UNDERSTAND HOW WE CAN DERIVE 2705 02:09:20,720 --> 02:09:24,080 NOT ONLY THE EFFICACY AND SAFETY 2706 02:09:24,080 --> 02:09:28,480 AND TOLERABILITY OF THAT 2707 02:09:28,480 --> 02:09:29,080 EDUCAT 2708 02:09:29,080 --> 02:09:29,680 INTERVENTION AND THE HEALTH 2709 02:09:29,680 --> 02:09:30,920 ECONOMIC IMPACT. 2710 02:09:30,920 --> 02:09:33,640 BEYOND LOOKING AT IT IN 2711 02:09:33,640 --> 02:09:34,760 EXPERIMENTAL CLINICAL TRIALS IT 2712 02:09:34,760 --> 02:09:36,200 OPENS ANOTHER QUESTION BECAUSE A 2713 02:09:36,200 --> 02:09:36,920 LOT OF WHAT THE STRATEGIC 2714 02:09:36,920 --> 02:09:40,240 PLANNING HAS FOCUSSED ON IS 2715 02:09:40,240 --> 02:09:43,120 RESEARCH AND RESEARCH-BASED 2716 02:09:43,120 --> 02:09:43,960 QUESTIONS BUT CLINICAL CARE, 2717 02:09:43,960 --> 02:09:46,640 FALLS AND INFECTIONS AS IT 2718 02:09:46,640 --> 02:09:47,840 PERTAINS TO CLINIC CARE IS 2719 02:09:47,840 --> 02:09:50,320 ANOTHER AREA WHERE I THINK WE 2720 02:09:50,320 --> 02:09:53,480 CAN CERTAINLY INVESTIGATE AND I 2721 02:09:53,480 --> 02:09:56,440 KNOW THAT THE ALS ASSOCIATION 2722 02:09:56,440 --> 02:09:57,640 HAS HAD AN INTEREST AND 2723 02:09:57,640 --> 02:09:58,640 INITIATIVE TO LOOK AT QUALITY 2724 02:09:58,640 --> 02:10:00,920 IMPROVEMENTS OF CARE BUT THIS IS 2725 02:10:00,920 --> 02:10:10,080 ALSO ANOTHER IMPORTANT TOPIC. 2726 02:10:10,080 --> 02:10:11,440 >>THE NEXT PERSON, JEAN AND 2727 02:10:11,440 --> 02:10:16,120 STEVE I THINK MAY WANT TO WEIGH 2728 02:10:16,120 --> 02:10:16,760 IN. 2729 02:10:16,760 --> 02:10:17,960 DO CAREGIVERS AND PEOPLE LIVING 2730 02:10:17,960 --> 02:10:19,920 WITH ALS FIND IT BENEFICIAL TO 2731 02:10:19,920 --> 02:10:21,920 PARTICIPATE IN ONLINE PATIENT 2732 02:10:21,920 --> 02:10:27,080 ADVOCACY GROUPS LIKE PATIENTS 2733 02:10:27,080 --> 02:10:35,360 LIKE ME? 2734 02:10:35,360 --> 02:10:39,080 AND WHAT ROLE SHOULD IT PLAY AND 2735 02:10:39,080 --> 02:10:40,560 LET US KNOW YOUR FEELINGS AND 2736 02:10:40,560 --> 02:10:47,560 TAKE INTO ACCOUNT PALS AND CALS. 2737 02:10:47,560 --> 02:10:49,440 >>THIS IS AN INTERESTING POINT 2738 02:10:49,440 --> 02:10:50,680 AN THERE'S ANOTHER QUESTION WE 2739 02:10:50,680 --> 02:10:54,440 MAY NOT GET TO THAT ALSO TOUCHED 2740 02:10:54,440 --> 02:10:56,600 ON THIS AND IT'S THE CONTEXT OF 2741 02:10:56,600 --> 02:10:58,080 PEOPLE SHARING THEIR TIPS AND 2742 02:10:58,080 --> 02:10:59,080 TRICKS CARING FOR THEIR LOVED 2743 02:10:59,080 --> 02:11:05,800 ONE WITH ALS. 2744 02:11:05,800 --> 02:11:06,960 WE MENTIONED EVIDENCE-BASED 2745 02:11:06,960 --> 02:11:11,680 INFORMATION AND RESOURCES. 2746 02:11:11,680 --> 02:11:14,560 AND ONLINE COMMUNITY AND SOCIAL 2747 02:11:14,560 --> 02:11:17,120 MEDIA IS A RESOURCE THAT CAN BE 2748 02:11:17,120 --> 02:11:18,320 TRANSFORMATIVE FOR PEOPLE LIVING 2749 02:11:18,320 --> 02:11:20,280 WITH ALS AND CAREGIVERS AND 2750 02:11:20,280 --> 02:11:26,560 PEOPLE AT RISK AT GENETIC ALS. 2751 02:11:26,560 --> 02:11:30,200 I THINK IT'S IMPORTANT FOR ANY 2752 02:11:30,200 --> 02:11:31,200 LISTING OF RESOURCES TO INCLUDE 2753 02:11:31,200 --> 02:11:31,400 THAT. 2754 02:11:31,400 --> 02:11:36,080 I KNOW WE SHOULD BE CAREFUL WHEN 2755 02:11:36,080 --> 02:11:39,280 THE GOVERNMENT OR CLINICAL 2756 02:11:39,280 --> 02:11:40,560 EXPERTS ARE GIVING INFORMATION 2757 02:11:40,560 --> 02:11:41,560 THAT IS EVIDENCE-BASED AND 2758 02:11:41,560 --> 02:11:45,160 PEOPLE WILL RELY ON IT AT 2759 02:11:45,160 --> 02:11:47,000 FULL-BASED VALUE AND NEED TO 2760 02:11:47,000 --> 02:11:49,600 ACCEPT THAT IT'S FULLY PROVEN. 2761 02:11:49,600 --> 02:11:51,320 CERTAINLY IN SOCIAL MEDIA OR 2762 02:11:51,320 --> 02:11:52,000 OTHER THINGS THAT'S NOT 2763 02:11:52,000 --> 02:12:02,400 NECESSARILY HAPPENING. 2764 02:12:04,120 --> 02:12:06,200 AND THIS IS JUST LIKE TALKING TO 2765 02:12:06,200 --> 02:12:10,880 OTHER PEOPLE AND YOU'LL HEAR 2766 02:12:10,880 --> 02:12:12,800 INTERESTING MENTION AND TALKING 2767 02:12:12,800 --> 02:12:23,000 TO OTHERS IS BENEFICIAL. 2768 02:12:23,000 --> 02:12:26,960 AND ENSURING THESE THINGS EXIST 2769 02:12:26,960 --> 02:12:31,240 AND PEOPLE WANT TO PARTICIPATE 2770 02:12:31,240 --> 02:12:32,320 IS A GOOD THING. 2771 02:12:32,320 --> 02:12:34,080 >>I AGREE WITH EVERYTHING YOU 2772 02:12:34,080 --> 02:12:34,400 SAID. 2773 02:12:34,400 --> 02:12:36,240 THIS IS PROBABLY HIGH ON THE 2774 02:12:36,240 --> 02:12:37,600 LIST OF THINGS FOLKS ASK ME 2775 02:12:37,600 --> 02:12:40,080 ABOUT WHEN THEY FIND OUT WE'RE 2776 02:12:40,080 --> 02:12:41,440 GOING TO DO AND LEARN A LITTLE 2777 02:12:41,440 --> 02:12:42,360 BIT. 2778 02:12:42,360 --> 02:12:44,240 THEY WANT TO KNOW RESOURCES AND 2779 02:12:44,240 --> 02:12:45,640 COMMUNITY GROUPS AND SUPPORT 2780 02:12:45,640 --> 02:12:46,960 GROUPS THEY CAN BELONG TO AND 2781 02:12:46,960 --> 02:12:48,040 AGAIN THIS FALLS UNDER THE 2782 02:12:48,040 --> 02:12:51,440 CATEGORY OF PARTICIPATION. 2783 02:12:51,440 --> 02:12:53,520 NOT ONLY DO WE WANT THEM TO 2784 02:12:53,520 --> 02:12:54,520 PARTICIPATE WHEN THEY'RE NEWLY 2785 02:12:54,520 --> 02:12:56,920 DIAGNOSED BUT STAY ENGAGED ALONG 2786 02:12:56,920 --> 02:12:58,280 THE WAY BECAUSE THAT CERTAINLY 2787 02:12:58,280 --> 02:13:01,920 HAS IMPACT ON THE QUALITY OF 2788 02:13:01,920 --> 02:13:04,680 LIFE AND FEELING THAT THEY'RE 2789 02:13:04,680 --> 02:13:05,520 CONNECTING WITH OTHERS OR 2790 02:13:05,520 --> 02:13:06,640 SHARING THEIR LIVED EXPERIENCE 2791 02:13:06,640 --> 02:13:08,760 AND WE CAN LEAN ON EACH OTHER 2792 02:13:08,760 --> 02:13:12,120 AND HELP EACH OTHER THROUGH 2793 02:13:12,120 --> 02:13:14,600 DIFFICULT JOURNEYS. 2794 02:13:14,600 --> 02:13:16,760 >>I ALSO WANTED TO POP IN AND 2795 02:13:16,760 --> 02:13:19,440 SAY ANOTHER REALLY GREAT BENEFIT 2796 02:13:19,440 --> 02:13:21,520 OF SPACES IN PATIENTS LIKE ME IS 2797 02:13:21,520 --> 02:13:22,800 FOR THE UNDER REPRESENTS 2798 02:13:22,800 --> 02:13:23,080 POPULATIONS. 2799 02:13:23,080 --> 02:13:25,000 THEY'RE USUALLY ABLE TO FIND 2800 02:13:25,000 --> 02:13:27,160 THESE SPACES AND FIND COMMUNITY 2801 02:13:27,160 --> 02:13:29,440 SO FOR YOUNGER PEOPLE WITH ALS, 2802 02:13:29,440 --> 02:13:30,920 BLACK PEOPLE WITH ALS, 2803 02:13:30,920 --> 02:13:32,120 INDIGENOUS FOLK WITH ALS, THEY 2804 02:13:32,120 --> 02:13:33,840 FOUND SOME OF THESE SPACES SO I 2805 02:13:33,840 --> 02:13:35,480 THINK IN ANSWERING THE SECOND 2806 02:13:35,480 --> 02:13:36,880 PART OF THE QUESTION OF HOW CAN 2807 02:13:36,880 --> 02:13:38,520 THE SPACES BE IMPROVED, I THINK 2808 02:13:38,520 --> 02:13:40,600 SOME OF THESE NON-PROFITS AND 2809 02:13:40,600 --> 02:13:41,800 COMMUNITY ORGANIZATIONS THAT CAN 2810 02:13:41,800 --> 02:13:42,960 MAYBE TAKE UP SOME OF THESE 2811 02:13:42,960 --> 02:13:46,440 SPACES AND MAKING THEM MORE 2812 02:13:46,440 --> 02:13:47,720 INTENTIONAL COMMUNITY SPACES 2813 02:13:47,720 --> 02:13:50,240 THAT MAYBE AREN'T SUPPORT GROUPS 2814 02:13:50,240 --> 02:13:52,720 BY NAME BUT ARE SUPPORT SPACES 2815 02:13:52,720 --> 02:13:55,080 WHERE PEOPLE WITH ALS COULD BE 2816 02:13:55,080 --> 02:13:56,200 WITH ONE ANOTHER COULD BE VERY 2817 02:13:56,200 --> 02:14:02,320 USEFUL. 2818 02:14:02,320 --> 02:14:04,240 >>AND DR. CARTER, WHILE ON THAT 2819 02:14:04,240 --> 02:14:06,840 THOUGHT A QUESTION CAME IN AND I 2820 02:14:06,840 --> 02:14:10,760 THINK THE LAST ONE WE'LL HAVE 2821 02:14:10,760 --> 02:14:14,680 TIME FOR, SOMEBODY FROM INDUSTRY 2822 02:14:14,680 --> 02:14:16,800 ASKED -- I'M LOSING IT BUT HOW 2823 02:14:16,800 --> 02:14:20,920 DO WE ENSURE PEOPLE ARE ABLE TO 2824 02:14:20,920 --> 02:14:22,320 HAVE BETTER REPRESENTATION IN 2825 02:14:22,320 --> 02:14:22,840 CLINICAL TRIALS? 2826 02:14:22,840 --> 02:14:24,440 >>IT'S A GREAT QUESTION. 2827 02:14:24,440 --> 02:14:26,640 I THINK I WOULD ARGUE THAT I 2828 02:14:26,640 --> 02:14:29,720 THINK THE P.I.s JUST HAVE TO 2829 02:14:29,720 --> 02:14:31,920 MAKE IT A PART OF THEIR PLAN. 2830 02:14:31,920 --> 02:14:34,600 I WAS RECENTLY ON OTHER OF 2831 02:14:34,600 --> 02:14:36,800 ANOTHER ORGANIZATION PANEL WITH 2832 02:14:36,800 --> 02:14:37,600 A RESEARCHER FROM EMORY 2833 02:14:37,600 --> 02:14:40,320 UNIVERSITY AND THEY HAVE NOW 2834 02:14:40,320 --> 02:14:41,760 HIRED SOMEONE EXPLICITLY TO 2835 02:14:41,760 --> 02:14:42,440 SUPPORT THE INITIATIVES THEY 2836 02:14:42,440 --> 02:14:44,360 WANT TO DO. 2837 02:14:44,360 --> 02:14:45,240 THIS PERSON ALREADY HAS 2838 02:14:45,240 --> 02:14:45,960 RELATIONSHIP WITH THE COMMUNITY 2839 02:14:45,960 --> 02:14:48,600 AND ENGAGED WITH THE COMMUNITY 2840 02:14:48,600 --> 02:14:49,920 AND BUILT TRUST WITH THE 2841 02:14:49,920 --> 02:14:50,480 COMMUNITY. 2842 02:14:50,480 --> 02:14:51,800 SHE'S ABLE TO ANCHOR THOSE 2843 02:14:51,800 --> 02:14:53,400 RELATIONSHIPS AND BUILD THE 2844 02:14:53,400 --> 02:14:55,840 TRUST TO BE ABLE TO GET MORE 2845 02:14:55,840 --> 02:14:58,240 COMMUNITIES OF COLOR INTO THOSE. 2846 02:14:58,240 --> 02:15:00,240 THINK IT'S INCUMBENT ON ANYONE 2847 02:15:00,240 --> 02:15:03,400 WANTING INDUSTRY OR P.I.s AT 2848 02:15:03,400 --> 02:15:04,920 CLINIC RESEARCH LABS, IF THIS IS 2849 02:15:04,920 --> 02:15:07,640 A PRIORITY YOU HAVE TO WANT TO 2850 02:15:07,640 --> 02:15:11,080 PAY FOR THESE THINGS AND REALLY 2851 02:15:11,080 --> 02:15:13,320 SUPPORT THE MOVEMENT OF FUNDS TO 2852 02:15:13,320 --> 02:15:16,080 SUPPORT NOT ONLY A PERSON THAT'S 2853 02:15:16,080 --> 02:15:17,760 ACTUALLY HIRED FOR THIS JOB BUT 2854 02:15:17,760 --> 02:15:19,440 KNOWING THE USUAL METHODS WE 2855 02:15:19,440 --> 02:15:21,960 UTILIZE FOR RESEARCH DEVELOPMENT 2856 02:15:21,960 --> 02:15:24,000 AREN'T GOING TO BE THE SAME FOR 2857 02:15:24,000 --> 02:15:25,560 UNDER REPRESENTED POPULATIONS. 2858 02:15:25,560 --> 02:15:26,840 ARE YOU GOING TO COMMUNITY 2859 02:15:26,840 --> 02:15:27,080 EVENTS? 2860 02:15:27,080 --> 02:15:28,800 ARE GOING TO CHURCHES AND 2861 02:15:28,800 --> 02:15:33,200 CALLING PEOPLE AND SENDING TEXT 2862 02:15:33,200 --> 02:15:33,440 MESSAGES? 2863 02:15:33,440 --> 02:15:34,960 ARE WE LOOKING OUTSIDE THE BOX 2864 02:15:34,960 --> 02:15:37,880 AND I HAVE A LONGER ANSWER BUT I 2865 02:15:37,880 --> 02:15:39,320 WANT TO BE RESPECTFUL OF TIME. 2866 02:15:39,320 --> 02:15:39,880 THANK YOU FOR THE QUESTION. 2867 02:15:39,880 --> 02:15:50,280 >>THANK YOU SO MUCH. 2868 02:15:52,320 --> 02:15:54,400 >>AND REACHING OUT TO THE 2869 02:15:54,400 --> 02:15:57,800 COMMUNITY TO GET UNDER 2870 02:15:57,800 --> 02:16:01,080 REPRESENTED MINORITIES NOT ONLY 2871 02:16:01,080 --> 02:16:04,320 AFRICAN AMERICAN BUT ALSO 2872 02:16:04,320 --> 02:16:06,960 HISPANIC AND OTHERS. 2873 02:16:06,960 --> 02:16:08,600 LUCKILY, I CAN LEVERAGE SOME OF 2874 02:16:08,600 --> 02:16:10,960 THE MECHANISMS ALREADY AVAILABLE 2875 02:16:10,960 --> 02:16:12,360 FOR THAT BECAUSE WE'RE COMMITTED 2876 02:16:12,360 --> 02:16:14,440 TO THAT. 2877 02:16:14,440 --> 02:16:16,560 I THINK THAT'S ALL WE HAVE TIME 2878 02:16:16,560 --> 02:16:17,560 FOR IN THE SESSION. 2879 02:16:17,560 --> 02:16:20,200 I WANT TO THANK MY COLLEAGUES IN 2880 02:16:20,200 --> 02:16:25,320 THE WORKING GROUP. 2881 02:16:25,320 --> 02:16:27,480 YOU GUYS HAVE BEEN SO TERRIFIC 2882 02:16:27,480 --> 02:16:30,160 TO WORK WITH AND YOUR COMMITMENT 2883 02:16:30,160 --> 02:16:32,760 TO THIS AREA AND TO ALS, PERIOD 2884 02:16:32,760 --> 02:16:34,320 IS JUST UNBELIEVABLE. 2885 02:16:34,320 --> 02:16:39,560 IT'S BEEN A PRIVILEGE. 2886 02:16:39,560 --> 02:16:43,960 THANK YOU. 2887 02:16:43,960 --> 02:16:45,520 FOR EVERYBODY OUT THERE, WE'LL 2888 02:16:45,520 --> 02:16:46,480 CONTINUE COLLECTIVE QUESTIONS 2889 02:16:46,480 --> 02:16:48,120 THROUGH THE ENGAGEMENT FORM ON 2890 02:16:48,120 --> 02:16:49,520 THE WEBSITE AND WE'RE LOOKING 2891 02:16:49,520 --> 02:16:51,240 FORWARD TO CONTINUING TO SHAPE 2892 02:16:51,240 --> 02:16:55,440 THE STRATEGIC PLAN AND SOME 2893 02:16:55,440 --> 02:17:00,520 PEOPLE BROUGHT UP PRIORITIZING 2894 02:17:00,520 --> 02:17:06,360 THE PRIORITIES AS WELL AS HOW DO 2895 02:17:06,360 --> 02:17:08,640 WE GET THE MONEY FOR ALL THIS. 2896 02:17:08,640 --> 02:17:10,440 WE CAN HAVE A WHOLE CONVERSATION 2897 02:17:10,440 --> 02:17:11,440 ABOUT LEVERAGING TECHNOLOGY AND 2898 02:17:11,440 --> 02:17:12,960 WHERE'S THE MONEY GOING TO COME 2899 02:17:12,960 --> 02:17:13,520 FROM. 2900 02:17:13,520 --> 02:17:15,000 THE TECHNOLOGY'S THERE WE JUST 2901 02:17:15,000 --> 02:17:17,720 NEED THE MONEY TO APPLY IT AND 2902 02:17:17,720 --> 02:17:23,120 GET THE RIGHT ENGINEERS WORKING. 2903 02:17:23,120 --> 02:17:24,920 THANK YOU, EVERYONE. 2904 02:17:24,920 --> 02:17:25,880 WE'LL MOVE FORWARD WITH THE NEXT 2905 02:17:25,880 --> 02:18:02,120 SECTION. 2906 02:18:02,120 --> 02:18:02,720 >>WELCOME BACK. 2907 02:18:02,720 --> 02:18:03,200 EVERYBODY. 2908 02:18:03,200 --> 02:18:04,840 THIS WAS A FANTASTIC SESSION 2909 02:18:04,840 --> 02:18:08,640 THIS MORNING AND CONGRATULATIONS 2910 02:18:08,640 --> 02:18:13,040 TO OUR WORKING GROUP AND ITS WAS 2911 02:18:13,040 --> 02:18:14,120 INSPIRING AND FANTASTIC GREAT 2912 02:18:14,120 --> 02:18:15,400 DISCUSSION AND WONDERFUL 2913 02:18:15,400 --> 02:18:15,800 QUESTIONS. 2914 02:18:15,800 --> 02:18:18,040 SO WITH THAT IN MIND, WE'RE 2915 02:18:18,040 --> 02:18:20,640 GOING TO MOVE ON TO OUR LAST 2916 02:18:20,640 --> 02:18:23,240 WORKING GROUP SESSION FOR THIS 2917 02:18:23,240 --> 02:18:30,240 WORKSHOP WHICH IS CO-CHAIRED BY 2918 02:18:30,240 --> 02:18:34,080 LISA GOLD AND DR. DOCTOROFF TO 2919 02:18:34,080 --> 02:18:38,280 UNDERSTAND COLLABORATIONS AN 2920 02:18:38,280 --> 02:18:39,240 PARTNERSHIPS AND FIND 2921 02:18:39,240 --> 02:18:41,960 OPPORTUNITIES TO WORK TOGETHER 2922 02:18:41,960 --> 02:18:42,800 MORE EFFICIENTLY AND WITH THAT 2923 02:18:42,800 --> 02:18:44,440 HAND IT OVER TO DAN AND LISA. 2924 02:18:44,440 --> 02:18:48,320 >>THANK YOU, RITA. 2925 02:18:48,320 --> 02:18:50,040 ANOTHER REMINDER YOU CAN ENTER 2926 02:18:50,040 --> 02:18:51,040 QUESTIONS IN THE ZOOM Q&A WORK 2927 02:18:51,040 --> 02:18:58,400 OR QUESTIONS AND COMMENTS. 2928 02:18:58,400 --> 02:18:59,080 I WANT TO THANK YOU. 2929 02:18:59,080 --> 02:19:02,720 MY NAME IS LISA GOLD I'LL 2930 02:19:02,720 --> 02:19:03,960 INTRODUCE MYSELF AND THEN ASK 2931 02:19:03,960 --> 02:19:08,480 DAN TO INTRODUCE HIMSELF. 2932 02:19:08,480 --> 02:19:09,720 I'M A NEURO SCIENTIST BY 2933 02:19:09,720 --> 02:19:10,080 TRAINING. 2934 02:19:10,080 --> 02:19:13,400 I STARTED IN ACADEMIC RESEARCH 2935 02:19:13,400 --> 02:19:14,520 AND SPENT 21 YEARS IN THE 2936 02:19:14,520 --> 02:19:15,840 PHARMACEUTICAL INDUSTRY. 2937 02:19:15,840 --> 02:19:20,080 MY MOTHER DIED OF ALS IN 19995 2938 02:19:20,080 --> 02:19:23,360 AND SO LIKE MANY PEOPLE ON THE 2939 02:19:23,360 --> 02:19:25,840 CALL THIS IS PERSONAL TO ME. 2940 02:19:25,840 --> 02:19:29,520 AND NOW I'LL TURN IT OVER TO 2941 02:19:29,520 --> 02:19:29,680 DAN. 2942 02:19:29,680 --> 02:19:31,640 >>THANK YOU, SO MUCH, LISA. 2943 02:19:31,640 --> 02:19:32,960 THANKS TO OUR WONDERFUL TEAM 2944 02:19:32,960 --> 02:19:34,040 MEMBERS. 2945 02:19:34,040 --> 02:19:37,200 ALL OF WHOLE YOU'LL HAVE THE 2946 02:19:37,200 --> 02:19:39,000 CHANCE TO MEET IN A LITTLE BIT. 2947 02:19:39,000 --> 02:19:43,920 I'M DAN DOCTOROFF. 2948 02:19:43,920 --> 02:19:47,520 MY FATHER DIED OF ALS IN 2002. 2949 02:19:47,520 --> 02:19:53,560 MY UNCLE, HIS BROTHER, DIED IN 2950 02:19:53,560 --> 02:19:53,760 2011. 2951 02:19:53,760 --> 02:19:55,760 AND WHEN MY UNCLE DIED, I 2952 02:19:55,760 --> 02:19:59,440 THOUGHT I HAD TO REALLY DO 2953 02:19:59,440 --> 02:19:59,720 SOMETHING. 2954 02:19:59,720 --> 02:20:01,560 I ASSUMED WHEN MY FATHER DIED IT 2955 02:20:01,560 --> 02:20:04,200 WAS JUST A FLUKE. 2956 02:20:04,200 --> 02:20:10,920 AT IT TURNS OUT MY UNCLE AND 2957 02:20:10,920 --> 02:20:17,080 FATHER AND UNCLE ALL HAD THE C9 2958 02:20:17,080 --> 02:20:17,360 MUTATION. 2959 02:20:17,360 --> 02:20:18,920 I'VE BEEN THE ETERNAL OPTIMIST, 2960 02:20:18,920 --> 02:20:28,280 ASSUMED I'D NEVER GET IT BUT 2961 02:20:28,280 --> 02:20:30,480 WHEN MY UNCLE DIED I STARTED 2962 02:20:30,480 --> 02:20:31,520 TARGET ALS. 2963 02:20:31,520 --> 02:20:36,600 THE WHOLE MISSION IS DESIGNED TO 2964 02:20:36,600 --> 02:20:37,320 ACCELERATE RESEARCH IN THE 2965 02:20:37,320 --> 02:20:39,120 SUCCESSFUL CLINICAL TRIALS AND 2966 02:20:39,120 --> 02:20:42,480 WE GO ABOUT IT MULTIPLE WAYS 2967 02:20:42,480 --> 02:20:47,520 INCLUDING FUNDING CONSORTIUM 2968 02:20:47,520 --> 02:20:50,360 RESEARCHERS OFTEN LED BY 2969 02:20:50,360 --> 02:20:52,040 INDUSTRY ON IMPORTANT VACCINE 2970 02:20:52,040 --> 02:20:55,960 PROBLEMS IN ALS RESEARCH. 2971 02:20:55,960 --> 02:20:59,240 WE ALSO FUND TOOLS AND RESOURCES 2972 02:20:59,240 --> 02:21:01,800 THAT ANYONE IN THE WORLD CAN 2973 02:21:01,800 --> 02:21:03,960 DRAW ON. 2974 02:21:03,960 --> 02:21:11,480 THINGS LIKE STEM CELL LINES AND 2975 02:21:11,480 --> 02:21:18,120 MOUSE MODELS AND POSTMORTEM 2976 02:21:18,120 --> 02:21:19,200 TISSUE SAMPLES AND BIO FLUIDS 2977 02:21:19,200 --> 02:21:20,200 AMONG OTHERS. 2978 02:21:20,200 --> 02:21:27,520 WE'RE VERY FOCUSSED ON GETTING 2979 02:21:27,520 --> 02:21:30,800 DERIVATIVE INVOLVED AND WE'RE 2980 02:21:30,800 --> 02:21:32,960 ACTIVELY ENGAGED WITH 123 2981 02:21:32,960 --> 02:21:37,920 COMPANIES OR VENTURE CAPITAL 2982 02:21:37,920 --> 02:21:38,920 FIRMS WHICH SHOULD FOR EVERYBODY 2983 02:21:38,920 --> 02:21:41,960 BE AN INCREDIBLY POSITIVE SIGN 2984 02:21:41,960 --> 02:21:43,800 THAT WE AS A FIELD ARE MAKING 2985 02:21:43,800 --> 02:21:45,680 SIGNIFICANT PROGRESS. 2986 02:21:45,680 --> 02:21:51,200 WE ALSO HAVE PARTNERSHIPS WITH 2987 02:21:51,200 --> 02:21:59,440 OTHER DISEASES WE HAVE VENTURES 2988 02:21:59,440 --> 02:22:00,720 WITH THE GATES AND ALZHEIMER'S 2989 02:22:00,720 --> 02:22:02,720 DISCOVERY FUND WORKING ON THINGS 2990 02:22:02,720 --> 02:22:03,520 LIKE BIOMARKER AND ANIMAL MODELS 2991 02:22:03,520 --> 02:22:06,920 AND OTHER THINGS. 2992 02:22:06,920 --> 02:22:10,160 AS I SAID, I NEVER EXPECTED I'D 2993 02:22:10,160 --> 02:22:10,840 GET ALS. 2994 02:22:10,840 --> 02:22:11,680 ABOUT A YEAR AGO I WAS 2995 02:22:11,680 --> 02:22:18,600 DIAGNOSED. 2996 02:22:18,600 --> 02:22:20,880 INTERESTINGLY, I DO NOT HAVE THE 2997 02:22:20,880 --> 02:22:22,560 C9 MUTATION SO I EITHER HAVE 2998 02:22:22,560 --> 02:22:28,560 ANOTHER GENETIC FORM THAT HASN'T 2999 02:22:28,560 --> 02:22:33,480 BEEN DISCOVERED YET OR SPORADIC 3000 02:22:33,480 --> 02:22:33,640 ALS. 3001 02:22:33,640 --> 02:22:37,200 BUT WHEN I WAS DIAGNOSED I 3002 02:22:37,200 --> 02:22:38,000 DECIDED TO RETIRE FROM THE 3003 02:22:38,000 --> 02:22:39,800 COMPANY I FORMED WITH GOOGLE AND 3004 02:22:39,800 --> 02:22:41,440 STEP BACK FROM MOST OF MY OTHER 3005 02:22:41,440 --> 02:22:44,520 INVOLVEMENT AND FOCUS ON SCALING 3006 02:22:44,520 --> 02:22:49,320 UP TARGET ALS AND WORKING WITH 3007 02:22:49,320 --> 02:22:53,000 THE WHOLE COMMUNITY TO ACC 3008 02:22:53,000 --> 02:22:56,240 ACCELERATE TREATMENT RESEARCH 3009 02:22:56,240 --> 02:23:01,320 INTO SUCCESSFUL TREATMENTS. 3010 02:23:01,320 --> 02:23:03,240 THANK YOU VERY MUCH AND THIS HAS 3011 02:23:03,240 --> 02:23:06,560 BEEN A GREAT HONOR TO BE A PART 3012 02:23:06,560 --> 02:23:07,560 OF THIS. 3013 02:23:07,560 --> 02:23:09,400 >>THANKS, DAN. 3014 02:23:09,400 --> 02:23:11,280 YOU SEE ON THE SLIDE THE MEMBERS 3015 02:23:11,280 --> 02:23:12,480 OF OUR COMMITTEE AND WE'LL ASK 3016 02:23:12,480 --> 02:23:16,080 THEM TO INTRODUCE THEMSELVES AT 3017 02:23:16,080 --> 02:23:17,360 THE END OF THE PRESENTATION TO 3018 02:23:17,360 --> 02:23:19,080 KICK OFF OUR DISCUSSION. 3019 02:23:19,080 --> 02:23:25,280 I WANT TO NOTE ALLISON BULAT AND 3020 02:23:25,280 --> 02:23:28,600 JOHN RAVITS ARE NOT ABLE TO JOIN 3021 02:23:28,600 --> 02:23:31,440 US AND WHILE DAN AND I WILL BE 3022 02:23:31,440 --> 02:23:32,160 GIVING THE PRESENTATION, THESE 3023 02:23:32,160 --> 02:23:34,400 ARE THE PEOPLE WHO PROPOSED THE 3024 02:23:34,400 --> 02:23:35,560 IDEAS AND DEVELOPED THE IDEAS 3025 02:23:35,560 --> 02:23:37,960 AND DISCUSSED THE IDEAS AND THEN 3026 02:23:37,960 --> 02:23:39,600 SELECTED THE TOP THREE 3027 02:23:39,600 --> 02:23:42,480 PRIORITIES WE'LL BE PRESENTING 3028 02:23:42,480 --> 02:23:48,960 TODAY. 3029 02:23:48,960 --> 02:23:50,760 OUR COMMITTEE IS MADE UP OF 3030 02:23:50,760 --> 02:23:55,840 BROAD REPRESENTATION OF THE ALS 3031 02:23:55,840 --> 02:23:56,120 COMMUNITY. 3032 02:23:56,120 --> 02:24:00,880 THAT INCLUDES INDIVIDUALS FROM 3033 02:24:00,880 --> 02:24:03,400 INDUSTRY, CLINICIANS, CLINICAL 3034 02:24:03,400 --> 02:24:05,920 AND PRE-CLINICAL RESEARCHERS AND 3035 02:24:05,920 --> 02:24:07,760 PEOPLE LIVING WITH ALS OR 3036 02:24:07,760 --> 02:24:11,040 MEMBERS WITH FAMILY MEMBERS 3037 02:24:11,040 --> 02:24:13,640 LIVING WITH ALS AND 3038 02:24:13,640 --> 02:24:17,400 REPRESENTATIVES OF THE FDA AND 3039 02:24:17,400 --> 02:24:20,600 NIH AND THESE ARE THE KEY GROUPS 3040 02:24:20,600 --> 02:24:22,000 TO BE INVOLVED IN ANY 3041 02:24:22,000 --> 02:24:31,680 COLLABORATION AND PARTNERSHIP. 3042 02:24:31,680 --> 02:24:37,120 THERE'S BEEN PROGRESS IN 3043 02:24:37,120 --> 02:24:41,240 ACCELERATING ALS RESEARCH INTO 3044 02:24:41,240 --> 02:24:42,400 CLINICAL TRIALS AND WE'RE 3045 02:24:42,400 --> 02:24:45,040 LOOKING TO TAKE ADVANTAGE AND 3046 02:24:45,040 --> 02:24:47,560 CONTINUE TO IMPROVE ON THE 3047 02:24:47,560 --> 02:24:52,880 PROCESS GOING FORWARD. 3048 02:24:52,880 --> 02:24:54,000 PROGRESS HAS OCCURRED IN 3049 02:24:54,000 --> 02:24:55,480 BRINGING TECHNOLOGIES IN THE 3050 02:24:55,480 --> 02:24:57,800 FIELD, NEW DISCOVERIES OF 3051 02:24:57,800 --> 02:24:59,880 GENETIC AND BIOLOGICAL PATHWAYS 3052 02:24:59,880 --> 02:25:02,280 TA CAUSE MOTOR NEURONS TO DIE 3053 02:25:02,280 --> 02:25:05,280 AND THE ENGAGEMENT OF THE BIO 3054 02:25:05,280 --> 02:25:06,480 TECH AND PHARMACEUTICAL 3055 02:25:06,480 --> 02:25:06,760 INDUSTRY. 3056 02:25:06,760 --> 02:25:08,720 FROM THE REQUEST OF INFORMATION, 3057 02:25:08,720 --> 02:25:11,040 INPUT FROM THE ALS COMMUNITY 3058 02:25:11,040 --> 02:25:12,120 HIGHLIGHTED HIGH AREAS OF 3059 02:25:12,120 --> 02:25:15,680 PRIORITY FOR COLLABORATIONS AND 3060 02:25:15,680 --> 02:25:19,520 PARTNERSHIPS THAT INCLUDE 3061 02:25:19,520 --> 02:25:20,160 URGENCY, ACCESS AND COORDINATION 3062 02:25:20,160 --> 02:25:25,960 OF RESEARCH EFFORTS. 3063 02:25:25,960 --> 02:25:32,240 WITH THIS IN MIND WE SELT A GOAL 3064 02:25:32,240 --> 02:25:34,640 TO LOOK AT SYNERGIES ACROSS 3065 02:25:34,640 --> 02:25:38,360 GOVERNMENTAL AND 3066 02:25:38,360 --> 02:25:39,480 NON-GOVERNMENTAL ORGANIZATIONS 3067 02:25:39,480 --> 02:25:42,480 AND TRANSLATE THE IDEA THE LAB 3068 02:25:42,480 --> 02:25:48,480 TO CLINIC AND CARE MODELS. 3069 02:25:48,480 --> 02:25:49,960 DAN IS GOING TO INTRODUCE YOU TO 3070 02:25:49,960 --> 02:26:00,400 OUR TOP THREE PRIORITIES. 3071 02:26:00,640 --> 02:26:04,840 THERE'S A LOT IN THIS STATEMENT 3072 02:26:04,840 --> 02:26:07,440 HERE THAT IS IMPORTANT TO 3073 02:26:07,440 --> 02:26:08,040 EMPHASIZE. 3074 02:26:08,040 --> 02:26:13,040 FIRST IS IMPORTANT POTENTIAL 3075 02:26:13,040 --> 02:26:22,800 SYNERGIES ACROSS ORGANIZATIONS 3076 02:26:22,800 --> 02:26:28,360 AND PARTNERSHIP AND WANT TO 3077 02:26:28,360 --> 02:26:29,600 LEVERAGE SHARED RESOURCES ALL 3078 02:26:29,600 --> 02:26:31,400 WITH THE GOAL OF ACCELERATING 3079 02:26:31,400 --> 02:26:34,440 THE TRANSLATION OF IDEA FROM THE 3080 02:26:34,440 --> 02:26:35,200 LAB TO CLINIC AND CLINICAL AND 3081 02:26:35,200 --> 02:26:45,440 CARE MODELS. 3082 02:26:51,040 --> 02:26:51,560 SOMETIMES PEOPLE DONE WORK 3083 02:26:51,560 --> 02:26:52,840 TOGETHER AND SHARE RESOURCES 3084 02:26:52,840 --> 02:26:57,280 WITH THE GOAL OF ACCELERATING 3085 02:26:57,280 --> 02:26:59,520 RESEARCH IN TO SUCCESSFUL 3086 02:26:59,520 --> 02:27:10,040 CLINICAL TRIALS AND CARE MODELS. 3087 02:27:10,480 --> 02:27:11,600 I THINK IT FRAMES THE DISCUSSION 3088 02:27:11,600 --> 02:27:22,120 DISCUSSION WE'RE ABOUT TO HAVE. 3089 02:27:28,040 --> 02:27:30,040 THEN WE'LL TALK MORE DETAIL 3090 02:27:30,040 --> 02:27:31,520 ABOUT THEM AND WE WILL ENGAGE 3091 02:27:31,520 --> 02:27:42,080 QUESTIONS AND ANSWERS. 3092 02:27:42,080 --> 02:27:47,960 FIRST IS TO ESTABLISH A 3093 02:27:47,960 --> 02:27:58,520 MULTI-MODEL DATA PLATFORM WE'RE 3094 02:28:06,040 --> 02:28:09,480 INCLUDING PATIENT DATA AND 3095 02:28:09,480 --> 02:28:13,400 CLINICAL DATA GENOMES, IMAGING, 3096 02:28:13,400 --> 02:28:17,120 BIO FLUIDS, SPECIMENS, BLOOD 3097 02:28:17,120 --> 02:28:23,480 REPOSITORY WITH A FOCUS ON 3098 02:28:23,480 --> 02:28:27,480 DEFINING THE STANDARDS OF FUTURE 3099 02:28:27,480 --> 02:28:29,760 DATA COLLECTION THAT WILL 3100 02:28:29,760 --> 02:28:40,320 PROMOTE OPEN DATA ANDS A.I. AND 3101 02:28:41,160 --> 02:28:51,640 MACHINE EARNING AND LOOK AT THE 3102 02:28:51,640 --> 02:28:55,920 HEAT HETEROGENOUS DISEASE AND 3103 02:28:55,920 --> 02:29:05,200 DEVELOP A PLATFORM OF RESOURCS 3104 02:29:05,200 --> 02:29:06,200 TO MAKE WORKING ON THE DISEASE 3105 02:29:06,200 --> 02:29:15,520 LOWER THE BARRIERS TO ENTRY. 3106 02:29:15,520 --> 02:29:21,320 WE'RE TALKINGS ANTIBODIES AND 3107 02:29:21,320 --> 02:29:26,520 VIRAL VECTORS TO IS BEING SELL 3108 02:29:26,520 --> 02:29:30,560 RATE RESEARCH AND LOOK AT WHAT 3109 02:29:30,560 --> 02:29:32,680 IS PRIORITIZED FOR FUTURE 3110 02:29:32,680 --> 02:29:37,080 SCIENTIFIC EFFORTS. 3111 02:29:37,080 --> 02:29:44,760 THE THIRD PRIORITY A FRAMEWORK 3112 02:29:44,760 --> 02:29:48,480 FOR RESEARCH COLLABORATION 3113 02:29:48,480 --> 02:29:53,960 ACROSS ACADEME ANDNON-PROFIT 3114 02:29:53,960 --> 02:30:04,200 ORGANIZAT 3115 02:30:10,520 --> 02:30:12,160 ORGANIZATIONS I'M GOING TO GO 3116 02:30:12,160 --> 02:30:17,560 INTO MORE KE TAIL ON EACH OF THE 3117 02:30:17,560 --> 02:30:20,040 FIRST TWO THEN LISA WILL TALK 3118 02:30:20,040 --> 02:30:28,680 ABOUT PRIORITY THREE. 3119 02:30:28,680 --> 02:30:33,880 WE'RE TALKING ABOUT A 3120 02:30:33,880 --> 02:30:39,040 MULTI-MOD 3121 02:30:39,040 --> 02:30:42,480 MULTI-MODELAL AND QUE NEED TO 3122 02:30:42,480 --> 02:30:48,640 BETTER UNDERSTAND THE DISEASE. 3123 02:30:48,640 --> 02:30:59,200 AND OUR HYPOTHESIS AND TOOLS FOR 3124 02:31:02,360 --> 02:31:05,160 GREATER EXTRACTION TECHNOLOGIES 3125 02:31:05,160 --> 02:31:11,680 AND A.I. AND MACHINE LEARNING WE 3126 02:31:11,680 --> 02:31:19,960 KCAN LOCK AT DEVELOPMENT AND WE 3127 02:31:19,960 --> 02:31:21,880 NEED TO HAVE COMPREHENSIVE 3128 02:31:21,880 --> 02:31:23,320 SOURCES OF DATA FROM LARGE AND 3129 02:31:23,320 --> 02:31:27,360 DIVERSE COHORTS OF PATIENTS. 3130 02:31:27,360 --> 02:31:28,720 THIS IS EXPENSIVE AND 3131 02:31:28,720 --> 02:31:34,400 COMPLICATED BUT WHAT WILL MAKE 3132 02:31:34,400 --> 02:31:44,840 THIS CRITICAL AND WHAT IS 3133 02:31:54,280 --> 02:31:55,520 NECESSARY TO ACHIEVE THIS AROUND 3134 02:31:55,520 --> 02:31:55,960 THE NEXT STEPS. 3135 02:31:55,960 --> 02:32:03,760 FIRST WE HAVE TO AGREE ON WHAT 3136 02:32:03,760 --> 02:32:06,680 THE ELEMENTS ARE FOR THE 3137 02:32:06,680 --> 02:32:07,520 MULTI-MODAL DATABASE AND THAT 3138 02:32:07,520 --> 02:32:12,600 INVOLVES BRINGING THE COMMUNITY 3139 02:32:12,600 --> 02:32:19,120 TOGET 3140 02:32:19,120 --> 02:32:24,280 TOGETHERAGE WILL NEED CONSENT ON 3141 02:32:24,280 --> 02:32:27,320 DATA COLLECTED RESPONSIVELY AND 3142 02:32:27,320 --> 02:32:29,400 NEED STANDARDS FOR ALL DATA 3143 02:32:29,400 --> 02:32:32,240 TYPES INCLUDING EMERGING DATA 3144 02:32:32,240 --> 02:32:33,400 TYPES AND GOING TO NEED A 3145 02:32:33,400 --> 02:32:44,080 CONSISTENT SET OF PROTOCOLS AND 3146 02:32:47,680 --> 02:32:48,240 LOOK AT THE POPULATION IN 3147 02:32:48,240 --> 02:32:49,080 RESEARCH DATABASES. 3148 02:32:49,080 --> 02:32:52,560 AS WE HEARD YESTERDAY THERE'S A 3149 02:32:52,560 --> 02:32:57,640 WHOLE SERIES OF DATABASES THAT 3150 02:32:57,640 --> 02:33:05,920 ARE IN THE PROCESS OF BEING 3151 02:33:05,920 --> 02:33:06,560 COLLEC 3152 02:33:06,560 --> 02:33:07,160 COLLEC 3153 02:33:07,160 --> 02:33:08,560 COLLECTED THERE'S ONES AROUND 3154 02:33:08,560 --> 02:33:11,720 THE WORLD BUT I THINK WE AGREE 3155 02:33:11,720 --> 02:33:15,520 THERE ARE GAPS. 3156 02:33:15,520 --> 02:33:21,440 AND THEY ARE NOT CONSISTENT AND 3157 02:33:21,440 --> 02:33:23,000 THE COLLECTION PROCESSES ARE NOT 3158 02:33:23,000 --> 02:33:23,480 THE SAME. 3159 02:33:23,480 --> 02:33:32,120 SO WHAT WE NEED TO DO IS LOOK AT 3160 02:33:32,120 --> 02:33:38,080 WHAT THE DATABASE IS AND HOW WE 3161 02:33:38,080 --> 02:33:40,560 COLLECT THE DATA AND THEN 3162 02:33:40,560 --> 02:33:45,960 COLLECT IT AND TIE WHATEVER 3163 02:33:45,960 --> 02:33:56,480 DATABASES THAT AND LOOK AT THE 3164 02:33:57,360 --> 02:34:07,800 DATA ELEMENTS TO BE CAPTURED. 3165 02:34:09,360 --> 02:34:11,720 AND WHAT IS OUT THERE AND HOW IT 3166 02:34:11,720 --> 02:34:13,240 CAN BE BROUGHT TOGETHER IN A 3167 02:34:13,240 --> 02:34:17,160 CONSISTENT STRATEGY. 3168 02:34:17,160 --> 02:34:19,680 WE HAVE TO CREATE THE MECHANISMS 3169 02:34:19,680 --> 02:34:30,000 FOR DATA SHARING. 3170 02:34:33,360 --> 02:34:34,840 AND SUBMIT TO THE SHARED DATA 3171 02:34:34,840 --> 02:34:36,280 PLATFORM AND PROVIDE CARROTS AND 3172 02:34:36,280 --> 02:34:41,520 STICKS TO MAKE SURE WE CAN 3173 02:34:41,520 --> 02:34:46,080 COLLECT IN A CONSISTENT MANNER 3174 02:34:46,080 --> 02:34:48,320 TO PROVIDING GUIDELINE AND 3175 02:34:48,320 --> 02:34:49,760 RESOURCE TO COLLECTION AND 3176 02:34:49,760 --> 02:34:50,360 CREATION OF DATA SETS ACROSS 3177 02:34:50,360 --> 02:35:00,480 STUDIES. 3178 02:35:04,880 --> 02:35:10,240 WE HAD MULTIPLE OPTIONS AND THIS 3179 02:35:10,240 --> 02:35:20,760 WAS BY FAR THE MOST AND THIS IS 3180 02:35:22,960 --> 02:35:25,080 IMPORTANT AND THIS IS NOT AN 3181 02:35:25,080 --> 02:35:27,240 INEXPENSIVE EFFORT AND HOPEFULLY 3182 02:35:27,240 --> 02:35:29,160 WE CAN DEVELOP A STRATEGY TO 3183 02:35:29,160 --> 02:35:38,720 FIND A WAY TO FUND THIS. 3184 02:35:38,720 --> 02:35:41,480 THE NEXT SLIDE IS TO DEVELOP 3185 02:35:41,480 --> 02:35:42,520 RESEARCH TOOLS AND PROTOCOLS AND 3186 02:35:42,520 --> 02:35:52,720 RESOURCES. 3187 02:35:56,600 --> 02:35:57,840 THE CRITICAL FACTOR WE'VE MADE 3188 02:35:57,840 --> 02:36:02,520 PROGRESS IN THE LAST DECADE IS 3189 02:36:02,520 --> 02:36:03,200 MORE PEOPLE FROM DIFFERENT FIELD 3190 02:36:03,200 --> 02:36:13,720 HAVE STARTED TO WORK ON ALS AND 3191 02:36:14,800 --> 02:36:15,520 THE EASE OF DOING RESEARCH HAS 3192 02:36:15,520 --> 02:36:23,720 GROWN GREATER. 3193 02:36:23,720 --> 02:36:27,520 WE NEED TO LOWER THE BARRIERS TO 3194 02:36:27,520 --> 02:36:28,120 ENTRY FOR RESEARCHERS BY 3195 02:36:28,120 --> 02:36:34,800 WIDENING THE FIELD. 3196 02:36:34,800 --> 02:36:36,200 THERE ARE TOOLS AND THERE'S LACK 3197 02:36:36,200 --> 02:36:43,360 OF AWARENESS WITH THE TOOLS AND 3198 02:36:43,360 --> 02:36:46,960 RESOUR 3199 02:36:46,960 --> 02:36:50,520 RESOURCES AND LACK OF PROTOCOLS 3200 02:36:50,520 --> 02:36:51,320 AND METHODOLOGIES TO CREATE AND 3201 02:36:51,320 --> 02:36:51,920 COLLECT AND USE THE TOOLS AND 3202 02:36:51,920 --> 02:36:58,000 RESOURCES. 3203 02:36:58,000 --> 02:37:01,960 WHAT WE BELIEVE IS NECESSARY IS 3204 02:37:01,960 --> 02:37:02,600 TO CENTRALIZE INFORMATION ON 3205 02:37:02,600 --> 02:37:05,800 TOOLS AND RESOURCES AND THAT WE 3206 02:37:05,800 --> 02:37:10,200 THINK WILL DRAW MORE PEOPLE IN 3207 02:37:10,200 --> 02:37:12,520 THE FIELD AND DO MAKE DOING 3208 02:37:12,520 --> 02:37:15,720 RESEARCH EASIER FOR EVERYONE WHO 3209 02:37:15,720 --> 02:37:24,320 IS ENGAGED. 3210 02:37:24,320 --> 02:37:30,120 WHAT WE SUGGEST IS TO FORM A 3211 02:37:30,120 --> 02:37:30,760 COMMITTEE THAT INCLUDES 3212 02:37:30,760 --> 02:37:32,560 REPRESENTATION FROM ACADEMIA AND 3213 02:37:32,560 --> 02:37:37,520 NONPROFITS AND GOVERNMENT THAT 3214 02:37:37,520 --> 02:37:41,800 WE HAVE TO LOOK AT THE TOOLS 3215 02:37:41,800 --> 02:37:45,720 NECESSARY TODAY AND POTENTIALLY 3216 02:37:45,720 --> 02:37:48,520 IN THE FUTURE IN ORDER TO DO 3217 02:37:48,520 --> 02:37:50,680 EFFECTIVE RESEARCH AND THAT CAN 3218 02:37:50,680 --> 02:37:52,120 INCLUDE THINGS LIKE BIO SAMPLES 3219 02:37:52,120 --> 02:37:59,520 AND ANIMAL MODELS ANTIBODIES, 3220 02:37:59,520 --> 02:38:06,760 STEM CELLS, ETCETERA. 3221 02:38:06,760 --> 02:38:12,960 WE NEED PROTOCOLS TO USE 3222 02:38:12,960 --> 02:38:15,200 CONSISTENT TOOLS AND RESOURCES 3223 02:38:15,200 --> 02:38:20,680 AND IDENTIFY GAPS IN TOOLS AND 3224 02:38:20,680 --> 02:38:25,920 RESOUR 3225 02:38:25,920 --> 02:38:27,400 RESOURCES AND USE THE TOOLS AND 3226 02:38:27,400 --> 02:38:33,120 MAKE SURE PEOPLE ARE USING THE 3227 02:38:33,120 --> 02:38:36,720 HIGHEST QUALITY TOOLS. 3228 02:38:36,720 --> 02:38:39,520 WE SEE THIS AS A PLATFORM BUT AS 3229 02:38:39,520 --> 02:38:50,040 AN INTERCONNECTED PLATFORM WHERE 3230 02:38:51,080 --> 02:38:56,440 THERE'LL BE MULTIPLE SOURCES OF 3231 02:38:56,440 --> 02:38:59,400 TOOLS AND HAVE CONSISTENT 3232 02:38:59,400 --> 02:39:00,320 POLICIES AND PROTOCOLS. 3233 02:39:00,320 --> 02:39:01,360 ONE THING THAT IS IMPORTANT AND 3234 02:39:01,360 --> 02:39:06,440 WE'VE SEEN THIS AT TARGET ALS, 3235 02:39:06,440 --> 02:39:08,320 IS IP. 3236 02:39:08,320 --> 02:39:13,400 IT WILL SLOW THINGS DOWN 3237 02:39:13,400 --> 02:39:16,720 DRAMATICALLY IF THESE PLATFORMS 3238 02:39:16,720 --> 02:39:19,400 AND THE CENTRALIZED PLATFORM 3239 02:39:19,400 --> 02:39:20,200 RETAIN RIGHTS TO DATA AND 3240 02:39:20,200 --> 02:39:24,760 INTERNATIONAL PROPERTY. 3241 02:39:24,760 --> 02:39:26,760 THESE NEED TO BE OPEN PLATFORMS 3242 02:39:26,760 --> 02:39:32,520 WHERE NO IP IS ACTUALLY TAKEN. 3243 02:39:32,520 --> 02:39:38,320 AGAIN, WE CAN USE THE NIH AND 3244 02:39:38,320 --> 02:39:43,320 IT'S FUNDING TO ENSURE FO AT 3245 02:39:43,320 --> 02:39:51,240 LEAST FOR PEOPLE FUNDED BY MIN 3246 02:39:51,240 --> 02:39:53,000 TO ENSURE WE UPLOAD HISTORICAL 3247 02:39:53,000 --> 02:39:58,000 INFORMATION AND WE'RE ALSO GOING 3248 02:39:58,000 --> 02:40:03,480 TO NEED AND TO SHARE INFORMATION 3249 02:40:03,480 --> 02:40:07,760 TO THE PLATFORM AS WELL. 3250 02:40:07,760 --> 02:40:09,680 AGAIN THE KEY THING IS LOWERING 3251 02:40:09,680 --> 02:40:11,440 THE BARRIERS TO ENTRY FOR 3252 02:40:11,440 --> 02:40:12,080 RESEARCHERS TO DO WHAT THEY DO 3253 02:40:12,080 --> 02:40:17,600 BEST. 3254 02:40:17,600 --> 02:40:20,360 THAT GOAL IS TO ACCELERATE 3255 02:40:20,360 --> 02:40:21,000 RESEARCH IN SUCCESSFUL CLINICAL 3256 02:40:21,000 --> 02:40:22,120 TRIALS. 3257 02:40:22,120 --> 02:40:30,520 LISA. 3258 02:40:30,520 --> 02:40:34,840 >>THANK YOU, DAN. 3259 02:40:34,840 --> 02:40:35,760 OUR THIRD PRIORITY WAS TO 3260 02:40:35,760 --> 02:40:38,880 ESTABLISH A FRAMEWORK FOR ALS 3261 02:40:38,880 --> 02:40:40,080 RESEARCH COLLABORATION. 3262 02:40:40,080 --> 02:40:42,640 AND AGAIN, WE'VE HAD A LOT OF 3263 02:40:42,640 --> 02:40:43,960 DISCUSSION ABOUT THIS ALREADY 3264 02:40:43,960 --> 02:40:46,920 HOW THERE IS A NEED TO BETTER 3265 02:40:46,920 --> 02:40:50,800 COORDINATE HOW THE ACADEMIC, 3266 02:40:50,800 --> 02:40:51,760 BIOPHARMACEUTICAL AND GOVERNMENT 3267 02:40:51,760 --> 02:40:53,360 SECTORS THAT PARTICIPATE IN ALS 3268 02:40:53,360 --> 02:40:57,520 RESEARCH AND THERAPY DEVELOPMENT 3269 02:40:57,520 --> 02:40:58,920 GENERATE, SHARE AND USE 3270 02:40:58,920 --> 02:41:00,040 KNOWLEDGE TO ADVANCE CRITICALLY 3271 02:41:00,040 --> 02:41:02,400 NEEDED THERAPIES. 3272 02:41:02,400 --> 02:41:05,040 SO THERE'S A LOT OF SEGMENTS OF 3273 02:41:05,040 --> 02:41:07,600 THE RESEARCH COMMUNITY THAT ARE 3274 02:41:07,600 --> 02:41:10,600 INVOLVED IN EFFORTS AND THERE'S 3275 02:41:10,600 --> 02:41:11,600 AN OPPORTUNITY FOR BETTER 3276 02:41:11,600 --> 02:41:14,440 COORDINATION SO THAT WE'RE ABLE 3277 02:41:14,440 --> 02:41:17,040 TO MOVE FORWARD MORE QUICKLY 3278 02:41:17,040 --> 02:41:20,680 WITH URGENCY THE COMMUNITY 3279 02:41:20,680 --> 02:41:23,480 DEMANDS AND REQUIRED. 3280 02:41:23,480 --> 02:41:27,520 THE HYPOTHESIS WE CAME UP WITH 3281 02:41:27,520 --> 02:41:33,000 WAS INCENTIVIZING ALS RESEARCH 3282 02:41:33,000 --> 02:41:35,000 STAKEHOLDERS FROM DISCOVERY OF 3283 02:41:35,000 --> 02:41:36,400 POSSIBLE THERAPEUTIC IDEAS TO 3284 02:41:36,400 --> 02:41:38,440 VALIDATION OF TARGETS AND 3285 02:41:38,440 --> 02:41:40,760 THROUGH DEVELOPMENT WILL HELP TO 3286 02:41:40,760 --> 02:41:42,520 FOCUS THE EFFORTS AND THEN 3287 02:41:42,520 --> 02:41:45,320 ACCELERATE THE TRANSLATION OF 3288 02:41:45,320 --> 02:41:48,120 IDEAS FROM THE LAB TO THE CLINIC 3289 02:41:48,120 --> 02:41:49,280 TO THE PEOPLE WITH ALS LIVING 3290 02:41:49,280 --> 02:41:52,280 WITH ALS TODAY. 3291 02:41:52,280 --> 02:41:54,480 AND THERE'S TWO EXAMPLES HERE OF 3292 02:41:54,480 --> 02:41:56,720 THESE TYPES OF RESEARCH 3293 02:41:56,720 --> 02:41:58,120 FRAMEWORKS OR COLLABORATIONS AND 3294 02:41:58,120 --> 02:42:03,200 YOU'VE HEARD ABOUT BOTH OF THEM 3295 02:42:03,200 --> 02:42:03,720 YESTERDAY. 3296 02:42:03,720 --> 02:42:07,240 THE CRITICAL PABLG FOR RARE 3297 02:42:07,240 --> 02:42:08,360 NEURODEGENERATIVE DISEASES 3298 02:42:08,360 --> 02:42:10,120 ANNOUNCED IN SEPTEMBER AND THE 3299 02:42:10,120 --> 02:42:11,400 ACCELERATING MEDICINES 3300 02:42:11,400 --> 02:42:12,520 PARTNERSHIP PROGRAM AND THOSE 3301 02:42:12,520 --> 02:42:17,720 ARE JUST TWO EXAMPLES AND ON THE 3302 02:42:17,720 --> 02:42:19,040 NEXT SLIDE I'LL PROVIDE A LITTLE 3303 02:42:19,040 --> 02:42:19,760 BIT MORE INFORMATION ABOUT ONE 3304 02:42:19,760 --> 02:42:25,600 OF THESE PARTNERSHIPS THAT HAS 3305 02:42:25,600 --> 02:42:29,200 BEEN VERY SUCCESSFUL RUN THREW 3306 02:42:29,200 --> 02:42:34,760 THE NIH PROGRAM AND ACCELERATED 3307 02:42:34,760 --> 02:42:43,760 MEDICINES, RAMP, LAUNCHED AS A 3308 02:42:43,760 --> 02:42:45,000 PUBLIC-PRIVATE PARTNERSHIP AMONG 3309 02:42:45,000 --> 02:42:46,840 NON PROFITS AND PHARMACEUTICAL 3310 02:42:46,840 --> 02:42:47,640 COMPANIES AND OTHER 3311 02:42:47,640 --> 02:42:49,040 ORGANIZATIONS TO TRANSFORM THE 3312 02:42:49,040 --> 02:42:49,840 MODEL FOR DEVELOPING NEW 3313 02:42:49,840 --> 02:42:57,840 DIAGNOSTICS AND TREATMENTS. 3314 02:42:57,840 --> 02:43:01,720 THERE'S A VARIETY OF PROGRAMS 3315 02:43:01,720 --> 02:43:03,480 THAT HAVE THESE ACROSS A RANGE 3316 02:43:03,480 --> 02:43:05,160 OF DISEASES AND MOST RELEVANT 3317 02:43:05,160 --> 02:43:07,400 FOR THIS GROUP IS ALZHEIMER'S 3318 02:43:07,400 --> 02:43:08,760 DISEASE AMP PROGRAM AND THEY'RE 3319 02:43:08,760 --> 02:43:13,800 ON A 2.0 PROGRAM FOR THAT. 3320 02:43:13,800 --> 02:43:16,200 THERE'S ONE ON PARKINSON'S 3321 02:43:16,200 --> 02:43:17,840 DISEASE AND SCHIZOPHRENIA. 3322 02:43:17,840 --> 02:43:19,120 THE AMP PARTNERS HAVE AN 3323 02:43:19,120 --> 02:43:20,640 INCREASING GOAL OF INCREASING 3324 02:43:20,640 --> 02:43:22,400 THE NUMBER OF NEW DIAGNOSTICS 3325 02:43:22,400 --> 02:43:23,440 AND THERAPIES FOR PATIENTS AND 3326 02:43:23,440 --> 02:43:24,560 TO REDUCE THE TIME AND COST OF 3327 02:43:24,560 --> 02:43:30,520 DEVELOPING THEM. 3328 02:43:30,520 --> 02:43:34,720 IT AIMS TO LOOK AT THE PATHWAYS 3329 02:43:34,720 --> 02:43:36,080 AND VALIDATE INFORMATION FOR THE 3330 02:43:36,080 --> 02:43:36,560 DEVELOPMENT OF MULTIPLE 3331 02:43:36,560 --> 02:43:40,960 THERAPIES. 3332 02:43:40,960 --> 02:43:44,520 THIS ENABLES THE BEST INFORMED 3333 02:43:44,520 --> 02:43:46,320 SCIENCE ACROSS ALL PARTICIPANTS. 3334 02:43:46,320 --> 02:43:48,640 AND THIS CROSS-SECTOR 3335 02:43:48,640 --> 02:43:50,000 PARTNERSHIPS ARE MANAGED 3336 02:43:50,000 --> 02:43:51,360 TYPICALLY THROUGH THE FOUNDATION 3337 02:43:51,360 --> 02:43:54,520 FOR THE NIH AND THE AMP PARTNERS 3338 02:43:54,520 --> 02:43:57,440 SHARE EXPERTISE AND RESOURCES IN 3339 02:43:57,440 --> 02:44:01,960 AN INTEGRATED GOVERNANCE 3340 02:44:01,960 --> 02:44:02,440 STRUCTURE. 3341 02:44:02,440 --> 02:44:04,240 WE HEARD A LOT AS WELL ABOUT NOT 3342 02:44:04,240 --> 02:44:08,080 WANTING TO REINVENT THE WHEEL 3343 02:44:08,080 --> 02:44:10,720 AND WE COULD UPDATE THE WHEEL 3344 02:44:10,720 --> 02:44:11,800 AND DEFINITELY NEED TO MAKE SURE 3345 02:44:11,800 --> 02:44:12,560 IT'S FIT FOR PURPOSE FOR ALS 3346 02:44:12,560 --> 02:44:22,720 RESEARCH. 3347 02:44:23,800 --> 02:44:25,840 FOR PRIORITY 3, THE KEYS TO 3348 02:44:25,840 --> 02:44:29,040 SUCCESS ARE BASICALLY 3349 02:44:29,040 --> 02:44:30,320 FACILITATING BETTER COORDINATION 3350 02:44:30,320 --> 02:44:31,480 AND ESPECIALLY BUILDING ON 3351 02:44:31,480 --> 02:44:36,560 SUCCESSFUL ONGOING PARTNERSHIPS. 3352 02:44:36,560 --> 02:44:38,520 AS MENTIONED BY DAN AND OTHERS, 3353 02:44:38,520 --> 02:44:40,280 THERE'S GREAT AND VERY PROMISING 3354 02:44:40,280 --> 02:44:42,400 AND SUCCESSFUL PARTNERSHIPS AND 3355 02:44:42,400 --> 02:44:44,280 COLLABORATION ARE ALREADY 3356 02:44:44,280 --> 02:44:46,160 ONGOING. 3357 02:44:46,160 --> 02:44:48,160 WHAT WE WANT TO DO IS FACILITATE 3358 02:44:48,160 --> 02:44:52,000 BETTER COORDINATION TO REALLY 3359 02:44:52,000 --> 02:44:53,200 LEVERAGE THE ONGOING SUCCESS OF 3360 02:44:53,200 --> 02:44:59,360 THOSE AND THE RESULTS RESEARCH. 3361 02:44:59,360 --> 02:45:02,840 AND INTEGRATE EXISTING 3362 02:45:02,840 --> 02:45:04,480 COLLABORATIONS SUCH AS TARGET 3363 02:45:04,480 --> 02:45:07,040 ALS OR THE ANSWER ALS AND 3364 02:45:07,040 --> 02:45:11,200 EVERYTHING ALS PROGRAMS AND 3365 02:45:11,200 --> 02:45:14,120 YOU'LL HEAR ABOUT OTHERS AND 3366 02:45:14,120 --> 02:45:15,880 LEVERAGING THE EFFORTS AND 3367 02:45:15,880 --> 02:45:19,120 OUTPUTS OF THOSE EXISTING 3368 02:45:19,120 --> 02:45:19,480 COLLABORATIONS. 3369 02:45:19,480 --> 02:45:21,520 AND THE FIRST STEP WOULD BE THEN 3370 02:45:21,520 --> 02:45:23,400 TO REVIEW THE PROGRAMS AND 3371 02:45:23,400 --> 02:45:25,720 INDEPENDENT ALS COLLABORATIONS 3372 02:45:25,720 --> 02:45:30,080 AND REALLY TRY TO IDENTIFY 3373 02:45:30,080 --> 02:45:31,240 LEARNINGS FROM THOSE THAT WILL 3374 02:45:31,240 --> 02:45:34,600 IMPROVE THE OVER ALL IMPACT AND 3375 02:45:34,600 --> 02:45:36,240 SPEED AS WELL AS TO IDENTIFY THE 3376 02:45:36,240 --> 02:45:37,920 SPECIFIC RESEARCH QUESTIONS THAT 3377 02:45:37,920 --> 02:45:39,520 ARE BEST ADDRESSED BY SUCH 3378 02:45:39,520 --> 02:45:41,600 FRAMEWORKS. 3379 02:45:41,600 --> 02:45:44,240 AND EARLY FOCUS AREAS WOULD 3380 02:45:44,240 --> 02:45:47,000 INCLUDE EVALUATION OF REGULATORY 3381 02:45:47,000 --> 02:45:50,480 ISSUES REGARDING SHARED PATIENT 3382 02:45:50,480 --> 02:45:52,760 DATA AND BIOLOGICS ACROSS 3383 02:45:52,760 --> 02:45:56,840 INDUSTRY AND I SAW A QUESTION 3384 02:45:56,840 --> 02:45:59,480 ABOUT SHARING PATIENT DATA 3385 02:45:59,480 --> 02:46:00,880 THAT'S A COMPLEX ISSUE. 3386 02:46:00,880 --> 02:46:03,000 CONSIDERATION OF MECHANISMS TO 3387 02:46:03,000 --> 02:46:04,600 ENCOURAGE AND SUPPORT ADDITIONAL 3388 02:46:04,600 --> 02:46:06,520 DATA SHARING BY SMALLER SOURCES 3389 02:46:06,520 --> 02:46:08,880 AS WELL AS PATIENTS WHILE 3390 02:46:08,880 --> 02:46:12,080 MAINTAINING DATA STANDARDS. 3391 02:46:12,080 --> 02:46:16,120 LEVERAGING NIH-FUNDED BIO SAMPLE 3392 02:46:16,120 --> 02:46:18,520 TO ADD NOVEL DATA AND SAMPLES 3393 02:46:18,520 --> 02:46:21,800 AND INVOLVING BIG DATA PARTNERS 3394 02:46:21,800 --> 02:46:24,560 AS DAN MENTIONED WITH A.I. AND 3395 02:46:24,560 --> 02:46:26,960 MUCH LEARNING TO DEVELOP NEEDED 3396 02:46:26,960 --> 02:46:28,200 TOOLS AND ALGORITHMS. 3397 02:46:28,200 --> 02:46:33,600 THESE ARE THE THINGS WE THINK 3398 02:46:33,600 --> 02:46:35,840 WOULD BE IMPORTANT NEXT STEPS 3399 02:46:35,840 --> 02:46:37,200 OBVIOUSLY ONCE THE FRAMEWORK IS 3400 02:46:37,200 --> 02:46:39,480 THERE THERE'LL BE INPUT FROM THE 3401 02:46:39,480 --> 02:46:41,680 PARTICIPANTS AND IDENTIFICATION 3402 02:46:41,680 --> 02:46:42,280 AND PRIORITIZATION OF THE KEY 3403 02:46:42,280 --> 02:46:52,000 FIRST NEXT STEPS. 3404 02:46:52,000 --> 02:46:57,960 THE NEXT SLIDE IS A SUMMARY. 3405 02:46:57,960 --> 02:47:02,640 OUR WORKING GROUP GOAL WAS TO 3406 02:47:02,640 --> 02:47:04,000 IDENTIFY THE MOST SYNERGIES 3407 02:47:04,000 --> 02:47:05,000 ACROSS GOVERNMENTAL AND NON OF 3408 02:47:05,000 --> 02:47:08,240 THIS GOVERNMENTAL ORGANIZATIONS 3409 02:47:08,240 --> 02:47:10,160 AND SHARE THE RESOURCES TO 3410 02:47:10,160 --> 02:47:12,920 TRANSLATE THE IDEAS FROM THE LAB 3411 02:47:12,920 --> 02:47:14,960 TO THE CLINIC AND CARE MODELS TO 3412 02:47:14,960 --> 02:47:15,520 THE ALS PATIENTS AND THEIR 3413 02:47:15,520 --> 02:47:24,520 FAMILIES. 3414 02:47:24,520 --> 02:47:26,600 WE EMPHASIZED WHAT WAS TAKEN 3415 02:47:26,600 --> 02:47:28,120 REGARDING URGENCY, ACCESS AND 3416 02:47:28,120 --> 02:47:28,640 COORDINATION OF RESEARCH 3417 02:47:28,640 --> 02:47:35,520 EFFORTS. 3418 02:47:35,520 --> 02:47:38,800 THE THREE HIGH PRIORITIES WERE 3419 02:47:38,800 --> 02:47:40,520 TO ESTABLISH A MULTI-MODAL DATA 3420 02:47:40,520 --> 02:47:41,760 PLATFORM AND DEVELOP A PLATFORM 3421 02:47:41,760 --> 02:47:43,600 FOR REPOSITORY OF RESEARCH 3422 02:47:43,600 --> 02:47:47,680 TOOLS, PROTOCOLS AND RESOURCES. 3423 02:47:47,680 --> 02:47:49,160 AND TO ESTABLISH A FRAMEWORK 3424 02:47:49,160 --> 02:47:59,320 FOR ALS RESEARCH COLLABORATION. 3425 02:47:59,320 --> 02:48:00,320 WE WANTED TO END WITH A 3426 02:48:00,320 --> 02:48:02,040 STATEMENT FROM THE COMMUNITIES, 3427 02:48:02,040 --> 02:48:05,400 SHARE YOUR DATA, DESIGNS, 3428 02:48:05,400 --> 02:48:07,800 FAILURES AND BEST PRACTICES AND 3429 02:48:07,800 --> 02:48:18,320 DUPLICATION OF WORK IS DEADLY. 3430 02:48:19,920 --> 02:48:21,840 I WANT TO THANK OUR MEMBERS TO 3431 02:48:21,840 --> 02:48:22,640 JOIN THE CONVERSATION AND WE'LL 3432 02:48:22,640 --> 02:48:28,080 HAVE EACH OF THEM INTRODUCE 3433 02:48:28,080 --> 02:48:29,920 THEMSELVES WE SHARING THEIR 3434 02:48:29,920 --> 02:48:33,560 CONNECTION TO ALS RESEARCH AND 3435 02:48:33,560 --> 02:48:35,360 THEN MOVE INTO A BRIEF 3436 02:48:35,360 --> 02:48:36,520 DISCUSSION PERIOD FOLLOWED BY 3437 02:48:36,520 --> 02:48:44,560 OUR QUESTION AND ANSWER PERIOD. 3438 02:48:44,560 --> 02:48:54,880 I'LL TURN IT TO DAN. 3439 02:49:04,560 --> 02:49:11,360 >>THANK YOU FOR HAVING ME. 3440 02:49:11,360 --> 02:49:19,800 I'M KULDIP AND I WAS AT THE 3441 02:49:19,800 --> 02:49:22,280 MICHAEL J. FOX FOUNDATION AND I 3442 02:49:22,280 --> 02:49:24,200 WORK THOR THE LARGEST PATIENT 3443 02:49:24,200 --> 02:49:28,280 ADVOCACY IN THE WORLD THE ALS 3444 02:49:28,280 --> 02:49:28,880 ASSOCIATION. 3445 02:49:28,880 --> 02:49:32,880 AND WE HAVE A CARE, RESEARCH AND 3446 02:49:32,880 --> 02:49:35,080 ADVOCACY APPROACH TO MAKE ALS A 3447 02:49:35,080 --> 02:49:35,680 LIVABLE DISEASE. 3448 02:49:35,680 --> 02:49:39,080 THAT MEANS LONGER LIVES, 3449 02:49:39,080 --> 02:49:40,320 LIFE-EXTENDING TREATMENTS FOR 3450 02:49:40,320 --> 02:49:45,000 PEOPLE WITH ALS AND IMPROVE 3451 02:49:45,000 --> 02:49:46,760 QUALITY OF LIVES AND GREATER 3452 02:49:46,760 --> 02:49:49,480 ENGAGEMENT AND AUTONOMY AND 3453 02:49:49,480 --> 02:49:52,920 REDUCING PHYSICAL EMOTIONAL 3454 02:49:52,920 --> 02:49:55,760 BURDENS AND FINANCIAL BURDENS 3455 02:49:55,760 --> 02:49:58,240 AND PROMOTING LOVED ONES FROM 3456 02:49:58,240 --> 02:49:59,440 GETTING ALS. 3457 02:49:59,440 --> 02:50:01,440 IF WE CAN FIND NEW RISK FACTORS 3458 02:50:01,440 --> 02:50:03,000 AND IDENTIFY THEM AND TREAT THEM 3459 02:50:03,000 --> 02:50:04,880 AS AS SOON AS POSSIBLE WE CAN 3460 02:50:04,880 --> 02:50:12,640 PREVENT NEW CASES OF ALS. 3461 02:50:12,640 --> 02:50:14,320 LISA ASKED TO SPEND TWO MINUTES 3462 02:50:14,320 --> 02:50:14,720 ON THOUGHT. 3463 02:50:14,720 --> 02:50:25,160 TWO THINGS COME TO MIND. 3464 02:50:26,520 --> 02:50:29,120 THERE WERE QUESTIONS AROUND ALS 3465 02:50:29,120 --> 02:50:31,360 RESEARCH NIH SHOULD SUPPORT AND 3466 02:50:31,360 --> 02:50:32,600 NIH PUT FORWARD 15 PRIORITIES IN 3467 02:50:32,600 --> 02:50:38,080 THE LAST TWO DAYS AND WHAT WE 3468 02:50:38,080 --> 02:50:40,000 NEED TO DO IS TO LOOK AT THE 3469 02:50:40,000 --> 02:50:41,680 MONEY EFFORT AND TIME TO IMPACT 3470 02:50:41,680 --> 02:50:43,600 THE 15 PRIORITY. 3471 02:50:43,600 --> 02:50:54,040 THAT'S WHAT NIH NEEDS NOW. 3472 02:50:55,560 --> 02:50:57,160 AND DEVELOPING A PLATFORM OF 3473 02:50:57,160 --> 02:50:58,880 TOOLS AND RESOURCES IS A 3474 02:50:58,880 --> 02:51:07,440 SIX-MONTHS TIME TO IMPACT. 3475 02:51:07,440 --> 02:51:09,080 HOW DO DO WE PRIORITIZE THE 3476 02:51:09,080 --> 02:51:10,080 PRIORITIES AND THE OTHER POINT I 3477 02:51:10,080 --> 02:51:12,680 WANT TO MAKE IS COLLABORATION 3478 02:51:12,680 --> 02:51:15,160 AND COORDINATION, I THINK WE 3479 02:51:15,160 --> 02:51:17,960 KIND OF GET THEM -- WE USE THEM 3480 02:51:17,960 --> 02:51:18,320 INTERCHANGEABLY. 3481 02:51:18,320 --> 02:51:19,840 THEY'RE NOT THE SAME THING. 3482 02:51:19,840 --> 02:51:21,120 COLLABORATION IS GETTING 3483 02:51:21,120 --> 02:51:23,560 EVERYBODY TO DO THE SAME THING 3484 02:51:23,560 --> 02:51:26,680 OR WORK IN THE SAME EXACT WAY. 3485 02:51:26,680 --> 02:51:28,280 COORDINATION IS KNOWING WHAT 3486 02:51:28,280 --> 02:51:30,080 EVERYBODY ELSE IS DOING AND THEN 3487 02:51:30,080 --> 02:51:31,680 TAKING THAT INTO ACCOUNT IN WHAT 3488 02:51:31,680 --> 02:51:40,800 YOU ARE WORKING ON. 3489 02:51:40,800 --> 02:51:42,800 THEY'RE BOTH IMPORTANT BUT WE 3490 02:51:42,800 --> 02:51:48,080 WANT DIVERSITY OF THOUGHT AND 3491 02:51:48,080 --> 02:51:49,480 APPROACH IN A SYSTEM AS COMPLEX 3492 02:51:49,480 --> 02:51:50,200 AS ALS. 3493 02:51:50,200 --> 02:51:52,120 THAT'S MY TWO POINTS OF VIEW. 3494 02:51:52,120 --> 02:51:59,320 >>THANK YOU. 3495 02:51:59,320 --> 02:52:01,280 KULDIP. 3496 02:52:01,280 --> 02:52:01,840 NETA. 3497 02:52:01,840 --> 02:52:05,000 >>I'M A NEURO SCIENTIST BY 3498 02:52:05,000 --> 02:52:06,640 TRAINING AND NOW YOU WORK IN 3499 02:52:06,640 --> 02:52:07,720 INDUSTRY IN PHARMACEUTICALS AND 3500 02:52:07,720 --> 02:52:09,120 I BRING A DIFFERENT PERSPECTIVE. 3501 02:52:09,120 --> 02:52:10,560 I WANT TO USE THIS PERSPECTIVE 3502 02:52:10,560 --> 02:52:15,160 TO BUILD ON WHAT KULDIP SAID. 3503 02:52:15,160 --> 02:52:18,480 ONE COMMON THING WE SEE ACROSS 3504 02:52:18,480 --> 02:52:19,760 THE DIFFERENT 15 PRIORITIES IS 3505 02:52:19,760 --> 02:52:22,600 THE SHARING OF DATA. 3506 02:52:22,600 --> 02:52:24,720 THE REASON FOR THIS IS THIS DATA 3507 02:52:24,720 --> 02:52:28,360 IS A PLATFORM OVER WHICH THE 3508 02:52:28,360 --> 02:52:30,680 EASIEST FOR US TO GROW BECAUSE 3509 02:52:30,680 --> 02:52:34,880 IN ORDER TO COLLABORATE, LIKE, 3510 02:52:34,880 --> 02:52:38,080 KULDIP SAID WE NEED TO AGREE ON 3511 02:52:38,080 --> 02:52:40,320 BASIC QUESTIONS AND IT'S NOT 3512 02:52:40,320 --> 02:52:41,240 ALWAYS EASY. 3513 02:52:41,240 --> 02:52:42,520 IN ORDER TO ALLOW DIVERSITY OF 3514 02:52:42,520 --> 02:52:44,840 APPROACHES WE WANT TO START BY 3515 02:52:44,840 --> 02:52:47,760 MAKING HIGH-QUALITY, LARGE DATA 3516 02:52:47,760 --> 02:52:49,640 SETS AVAILABLE FOR THE RESEARCH 3517 02:52:49,640 --> 02:52:51,520 COMMUNITY AND THERE BE ALLOWING 3518 02:52:51,520 --> 02:52:54,480 MANY DIFFERENT QUESTIONS TO BE 3519 02:52:54,480 --> 02:52:56,360 ANSWER IN MANY DIFFERENT WAYS. 3520 02:52:56,360 --> 02:52:58,040 THAT'S WHY WE CHOSE OUR FIRST 3521 02:52:58,040 --> 02:52:59,440 PRIORITY TO BE TO BRING TOGETHER 3522 02:52:59,440 --> 02:53:03,880 A LOT OF DATA. 3523 02:53:03,880 --> 02:53:05,560 THE THIRD PRIORITY FOR US AND 3524 02:53:05,560 --> 02:53:09,800 ANOTHER COMMON THEME IS HOW TO 3525 02:53:09,800 --> 02:53:11,680 BRING TOGETHER THE DIFFERENT 3526 02:53:11,680 --> 02:53:13,680 IDEAS AND LEARN ABOUT EACH 3527 02:53:13,680 --> 02:53:17,720 OTHER'S PRIORITIES SUCH THAT WE 3528 02:53:17,720 --> 02:53:18,560 CAN ALSO COLLABORATE 3529 02:53:18,560 --> 02:53:19,880 MEANINGFULLY HOW TO CREATE 3530 02:53:19,880 --> 02:53:21,080 MODELS TO UNDERSTAND HOW THE 3531 02:53:21,080 --> 02:53:21,880 DIFFERENT PERSPECTIVES COME 3532 02:53:21,880 --> 02:53:24,720 TOGETHER AND WHAT TYPE OF 3533 02:53:24,720 --> 02:53:25,960 QUESTIONS HELP US ADDRESS BOTH 3534 02:53:25,960 --> 02:53:27,560 THE SCIENCE AND THE TRANSLATION 3535 02:53:27,560 --> 02:53:29,280 OF THE SCIENCE INTO MEANINGFUL 3536 02:53:29,280 --> 02:53:31,520 DRUGS AND HOW TO INCORPORATE 3537 02:53:31,520 --> 02:53:34,880 MORE DIVERSITY OF PATIENTS AND 3538 02:53:34,880 --> 02:53:36,360 PATIENT'S EXPERIENCES INTO THAT 3539 02:53:36,360 --> 02:53:37,320 THINKING. 3540 02:53:37,320 --> 02:53:40,280 SO FIRST WE WANT TO CREATE A 3541 02:53:40,280 --> 02:53:41,560 FRAMEWORK THAT EVERYONE CAN USE 3542 02:53:41,560 --> 02:53:42,560 DIFFERENTLY FROM EACH OTHER AND 3543 02:53:42,560 --> 02:53:44,680 SECOND OF ALL WE WANT TO CREATE 3544 02:53:44,680 --> 02:53:48,080 A FRAMEWORK IN WHICH PEOPLE CAN 3545 02:53:48,080 --> 02:53:50,360 COME TOGETHER AND LEARN ABOUT 3546 02:53:50,360 --> 02:53:51,400 DIFFERENT APPROACHES AND 3547 02:53:51,400 --> 02:53:53,800 EVENTUALLY COME TO KEY QUESTIONS 3548 02:53:53,800 --> 02:53:54,640 TO BE ANSWERED TOGETHER. 3549 02:53:54,640 --> 02:53:59,880 >>THANK YOU. 3550 02:53:59,880 --> 02:54:00,600 WITHOUT THESE TWO COMBINED IT 3551 02:54:00,600 --> 02:54:02,400 WOULD BE HARD TO REACH THE 3552 02:54:02,400 --> 02:54:03,640 ULTIMATE GOAL WHICH IS TO ALSO 3553 02:54:03,640 --> 02:54:11,760 BRING TREATMENT FOR PATIENTS. 3554 02:54:11,760 --> 02:54:14,560 >>HI, I APOLOGIZE I'M AT A 3555 02:54:14,560 --> 02:54:16,880 FUNERAL AND IF I GO IN NOW, JUST 3556 02:54:16,880 --> 02:54:18,720 MOVE ON TO SOMEONE ELSE. 3557 02:54:18,720 --> 02:54:24,320 WHAT I WANT TO THANK BOTH OF YOU 3558 02:54:24,320 --> 02:54:34,760 FOR RUNNING THIS SECTION. 3559 02:54:35,360 --> 02:54:38,120 I'M A CLINICIAN AT JOHNS HOPKINS 3560 02:54:38,120 --> 02:54:40,560 AND I FOUNDED THE PACKARD CENTER 3561 02:54:40,560 --> 02:54:49,560 IN 2000 AND IT WAS DESIGNED TO 3562 02:54:49,560 --> 02:54:52,240 BE ABOUT COLLABORATION AND 3563 02:54:52,240 --> 02:54:54,560 BRINGING ACADEMICS TOGETHER TO 3564 02:54:54,560 --> 02:54:59,240 BRING TOGETHER MANDATORY 3565 02:54:59,240 --> 02:55:08,160 RESEARCH AND WE WERE FOCUSSED ON 3566 02:55:08,160 --> 02:55:10,880 TRYING TO GET THE EARLY 3567 02:55:10,880 --> 02:55:11,280 RESEARCH. 3568 02:55:11,280 --> 02:55:12,440 EARLY RESEARCH DRIVES THE FUTURE 3569 02:55:12,440 --> 02:55:15,920 DEVELOPMENT OF DRUGS. 3570 02:55:15,920 --> 02:55:17,920 AND I SHOULD MENTION BIOMARKERS 3571 02:55:17,920 --> 02:55:18,240 AS WELL. 3572 02:55:18,240 --> 02:55:20,080 THAT'S GONE ON BEAUTIFULLY FOR 3573 02:55:20,080 --> 02:55:20,560 23 YEARS. 3574 02:55:20,560 --> 02:55:24,080 IN 2015, WE CAME UP WITH A NEW 3575 02:55:24,080 --> 02:55:25,880 PLAN TO ADDRESS THE VERY CORE 3576 02:55:25,880 --> 02:55:28,480 ASPECT OF ALS WHICH IS STILL 3577 02:55:28,480 --> 02:55:31,000 UNTAPPED WHICH IS SPORADIC ALS 3578 02:55:31,000 --> 02:55:33,200 AND CAN WE IDENTIFY THE 3579 02:55:33,200 --> 02:55:34,360 BIOLOGICAL SUB GROUPS AND THAT 3580 02:55:34,360 --> 02:55:36,880 WAS THE PROGRAM I WAS THE 3581 02:55:36,880 --> 02:55:37,920 ARCHITECT FOR. 3582 02:55:37,920 --> 02:55:40,280 TODAY IT'S A COLLABORATION OF 3583 02:55:40,280 --> 02:55:42,480 100 RESEARCHERS AND 1,000 3584 02:55:42,480 --> 02:55:42,760 PATIENTS. 3585 02:55:42,760 --> 02:55:46,120 EVERYTHING WE'VE BEEN TALKING 3586 02:55:46,120 --> 02:55:48,960 ABOUT AND THOUGH I'LL CALL IT 3587 02:55:48,960 --> 02:55:51,840 SMALL SCALE IS LARGE AND WHAT WE 3588 02:55:51,840 --> 02:55:53,560 NEEDED WIN SHARING OF BIO FLUIDS 3589 02:55:53,560 --> 02:55:56,320 AND DATA AND AT-HOME MONITORING 3590 02:55:56,320 --> 02:55:58,320 OF PATIENTS TO GET THE DEEP DATA 3591 02:55:58,320 --> 02:56:00,600 WE GET WHEN PATIENTS CANT GET IT 3592 02:56:00,600 --> 02:56:07,640 TO CLINIC AND THE IPS CELLS 3593 02:56:07,640 --> 02:56:11,920 SERVING AS THE FOUNDATION TO 3594 02:56:11,920 --> 02:56:13,360 FINDING THE PATHOLOGICAL 3595 02:56:13,360 --> 02:56:15,040 PATHWAYS AND SPORADIC. 3596 02:56:15,040 --> 02:56:17,560 THERE'S NO SUCH THING AS AN A 3597 02:56:17,560 --> 02:56:19,640 MOUSE MODEL SPORADIC ALS. 3598 02:56:19,640 --> 02:56:21,920 I GREW UP WITH THOSE MODELS AND 3599 02:56:21,920 --> 02:56:23,880 KNOW THEM WELL AND SERVING THE 3600 02:56:23,880 --> 02:56:26,760 SPORADIC POPULATION. 3601 02:56:26,760 --> 02:56:28,520 AND ALL BUILDING THE 3602 02:56:28,520 --> 02:56:30,320 COLLABORATIVE TOOLS IS WHAT THIS 3603 02:56:30,320 --> 02:56:32,200 GROUP IS ABOUT AND NEED TO GET 3604 02:56:32,200 --> 02:56:33,680 TO OTHER POPULATIONS. 3605 02:56:33,680 --> 02:56:35,120 AND LASTLY, DAN CORRECTLY POINT 3606 02:56:35,120 --> 02:56:38,520 THE OUT HOW DO WE MAKE SURE THIS 3607 02:56:38,520 --> 02:56:41,240 IS SHARED WIDELY AND WE WERE 3608 02:56:41,240 --> 02:56:43,160 FORTUNATE TO PARTNER WITH 3609 02:56:43,160 --> 02:56:45,400 MICROSOFT AND BUILD A PORTAL 3610 02:56:45,400 --> 02:56:47,240 WHERE ALL THE DATA IS FREELY 3611 02:56:47,240 --> 02:56:49,800 SHARED AND TARGETED IMPORTANTLY 3612 02:56:49,800 --> 02:56:51,160 AND STRESSED WITH NO IP 3613 02:56:51,160 --> 02:56:51,480 RESTRICTIONS. 3614 02:56:51,480 --> 02:56:52,840 GIVE THE DATA OUT AND NO 3615 02:56:52,840 --> 02:56:54,520 UNIVERSITY CAN TRY TO OWN IT. 3616 02:56:54,520 --> 02:56:56,000 IT'S ALL FREELY AVAILABLE TO LET 3617 02:56:56,000 --> 02:56:57,720 THE WORLD'S COMMUNITY USE THAT 3618 02:56:57,720 --> 02:56:58,520 AS A STARTING POINT FOR 3619 02:56:58,520 --> 02:57:00,560 RESEARCH. 3620 02:57:00,560 --> 02:57:03,360 I THINK IT'S A SMALL EFFORT ON 3621 02:57:03,360 --> 02:57:04,520 OUR PART AND LARGE AMONG THE 3622 02:57:04,520 --> 02:57:07,360 GROUP WORKING ON IT AND THE IDEA 3623 02:57:07,360 --> 02:57:09,880 OF BRINGING OTHER RESOURCES THAT 3624 02:57:09,880 --> 02:57:11,360 ARE BEING DEVELOPED OR COULD BE 3625 02:57:11,360 --> 02:57:13,520 DEVELOPED ON THESE PLATFORMS TO 3626 02:57:13,520 --> 02:57:15,440 CHANGE THE COURSE OF OUR 3627 02:57:15,440 --> 02:57:17,520 UNDERSTANDING OF SPORADIC ALS 3628 02:57:17,520 --> 02:57:18,400 AND ALS IN GENERAL TO DISCOVER 3629 02:57:18,400 --> 02:57:28,720 EFFECTIVE THERAPIES. 3630 02:57:29,720 --> 02:57:35,400 >>THANKS, DAN AND LISA. 3631 02:57:35,400 --> 02:57:38,600 I'M ANDREA PAULS BACKMAN. 3632 02:57:38,600 --> 02:57:40,800 I LOST MY MOM THREE YEARS AFTER 3633 02:57:40,800 --> 02:57:41,320 HER DIAGNOSIS. 3634 02:57:41,320 --> 02:57:43,000 I WAS ONE OF HER PRIMARY 3635 02:57:43,000 --> 02:57:45,200 CAREGIVERS AND HONESTLY THE 3636 02:57:45,200 --> 02:57:47,080 PROCESS WAS SO PROFOUND IT 3637 02:57:47,080 --> 02:57:49,040 CHANGED MY LIFE IN MANY WAYS AND 3638 02:57:49,040 --> 02:57:51,560 CHANGED MY CAREER TRAJECTORY. 3639 02:57:51,560 --> 02:57:54,280 I LEFT A 30 YEAR CAREER IN 3640 02:57:54,280 --> 02:57:55,680 INVESTMENT MANAGEMENT AND 3641 02:57:55,680 --> 02:57:57,120 PRIVATE EQUITY AND GOT INVOLVED 3642 02:57:57,120 --> 02:57:58,400 IN THE ALS COMMUNITY. 3643 02:57:58,400 --> 02:58:01,080 I SERVED ON A BOARD OF TRUSTEES 3644 02:58:01,080 --> 02:58:04,600 MEMBER FOR THE ALS ASSOCIATION 3645 02:58:04,600 --> 02:58:09,080 AND I'VE BEEN THE CEO OF THE 3646 02:58:09,080 --> 02:58:10,400 OLDEST INDEPENDENT ALS 3647 02:58:10,400 --> 02:58:15,400 FOUNDATION IN THE COUNTRY AND ON 3648 02:58:15,400 --> 02:58:17,160 ASSOCIATIONS AND INVOLVED IN A 3649 02:58:17,160 --> 02:58:18,280 VARIETY OF INITIATIVES AND 3650 02:58:18,280 --> 02:58:18,640 ORGANIZATIONS. 3651 02:58:18,640 --> 02:58:21,960 I'M HAPPY TO BE PART OF THIS 3652 02:58:21,960 --> 02:58:22,360 GROUP. 3653 02:58:22,360 --> 02:58:24,240 COLLABORATION OF PARTNERSHIPS 3654 02:58:24,240 --> 02:58:26,200 ARE NEAR AND DEAR TO MY HEART 3655 02:58:26,200 --> 02:58:32,080 AND I WANT TO TOUCH ON THAT. 3656 02:58:32,080 --> 02:58:34,080 THERE'S LIMITED RESOURCES AND 3657 02:58:34,080 --> 02:58:35,600 TIME WHICH IS CLEARLY THE CASE 3658 02:58:35,600 --> 02:58:37,400 WHEN YOU'RE DEALING WITH A 3659 02:58:37,400 --> 02:58:38,480 TERMINAL, RAPIDLY PROGRESSING 3660 02:58:38,480 --> 02:58:38,760 DISEASE. 3661 02:58:38,760 --> 02:58:41,080 IN MY OWN EXPERIENCE, WHEN I 3662 02:58:41,080 --> 02:58:43,960 CAME TO LESS TURNER AND IN 3663 02:58:43,960 --> 02:58:45,360 WORKING WITH THE CENTER AT 3664 02:58:45,360 --> 02:58:48,880 WESTERN MEDICINE, I SAW IT HOW 3665 02:58:48,880 --> 02:58:51,440 IN MANY ACADEMIC INSTITUTIONS AN 3666 02:58:51,440 --> 02:58:55,760 OLDER MORE INSULATED MODEL WAS 3667 02:58:55,760 --> 02:58:56,840 HAMPERING THE SPEED OF 3668 02:58:56,840 --> 02:58:57,200 DISCOVERY. 3669 02:58:57,200 --> 02:58:58,360 THE WORK IS TOO IMPORTANT TO BE 3670 02:58:58,360 --> 02:58:59,880 DONE IN A VACUUM. 3671 02:58:59,880 --> 02:59:01,240 I COULD SEE THERE WERE FUNDERS 3672 02:59:01,240 --> 02:59:10,320 THAT WERE INCENTIVIZING THIS. 3673 02:59:10,320 --> 02:59:12,960 NOT DELIBERATELY BUT THAT WAS 3674 02:59:12,960 --> 02:59:13,920 THE DOWN STREAM EFFECT. 3675 02:59:13,920 --> 02:59:19,840 I LOOKED TO BECOME MORE 3676 02:59:19,840 --> 02:59:24,000 COLLABORATIVE AND WE PARTNERED 3677 02:59:24,000 --> 02:59:29,040 IN VARIOUS RESEARCH EFFORTS AND 3678 02:59:29,040 --> 02:59:33,000 EVERY OTHER ORGANIZATIONS ON 3679 02:59:33,000 --> 02:59:35,600 DRUG APPROVALS AND SEEING 3680 02:59:35,600 --> 02:59:39,000 IMPROVED RESULTS IN THE ALS 3681 02:59:39,000 --> 02:59:39,760 COMMUNE. 3682 02:59:39,760 --> 02:59:41,040 AND IN THE LESS TURNER 3683 02:59:41,040 --> 02:59:46,360 FOUNDATION WE WERE IN THE HOIMZ 3684 02:59:46,360 --> 02:59:47,160 OF PEOPLE LIVING WING ALS AND 3685 02:59:47,160 --> 02:59:52,760 GOT THEIR INPUT ON REAL TIME 3686 02:59:52,760 --> 03:00:02,840 BASIS. 3687 03:00:04,800 --> 03:00:06,400 AND WE NEED TO STRUCTURE IN THE 3688 03:00:06,400 --> 03:00:07,440 STRATEGIC PLAN. 3689 03:00:07,440 --> 03:00:12,840 >>THANK YOU. 3690 03:00:12,840 --> 03:00:13,400 ANDREA. 3691 03:00:13,400 --> 03:00:13,640 SHARON. 3692 03:00:13,640 --> 03:00:15,840 I'M SHARON HESTERLEE THE CHIEF 3693 03:00:15,840 --> 03:00:18,120 RESEARCH OFFICER AT THE MUSCULAR 3694 03:00:18,120 --> 03:00:19,880 DYSTROPHY ASSOCIATION. 3695 03:00:19,880 --> 03:00:22,120 I'VE BEEN IN THIS SPACE ABOUT 20 3696 03:00:22,120 --> 03:00:22,320 YEARS. 3697 03:00:22,320 --> 03:00:24,560 BOTH IN THE NONPROFIT SIDE AND 3698 03:00:24,560 --> 03:00:30,680 IN PHARMA AND BIOTECH COMPANIES 3699 03:00:30,680 --> 03:00:36,480 AND ALS IS A BIG PART OF OUR 3700 03:00:36,480 --> 03:00:40,680 PORTFOLIO AND ALWAYS HAS BEEN WE 3701 03:00:40,680 --> 03:00:41,840 WERE THE FIRST ORGANIZATION TO 3702 03:00:41,840 --> 03:00:43,640 FOCUS ON ALS RESEARCH AND HAVE 3703 03:00:43,640 --> 03:00:45,960 SPENT MILLIONS OVER THE YEARS 3704 03:00:45,960 --> 03:00:48,800 AND HAVE A DATABASE OF CLINICAL 3705 03:00:48,800 --> 03:00:52,520 DATA THAN HIGH QUALITY AN 3706 03:00:52,520 --> 03:00:57,280 ANONYMIZED DATA FROM OVER 2,000 3707 03:00:57,280 --> 03:00:58,640 PEOPLE PARTICIPANTS. 3708 03:00:58,640 --> 03:01:01,200 I KNOW MANY HAVE BEEN IN THE 3709 03:01:01,200 --> 03:01:03,200 SPACE AND IT'S MOSTLY 3710 03:01:03,200 --> 03:01:05,320 FRUSTRATING TO SEE HOW SLOW, HOW 3711 03:01:05,320 --> 03:01:09,800 MUCH EFFORTS HAS GONE INTO THIS 3712 03:01:09,800 --> 03:01:12,720 SPACE WITH WHAT FEELS LIKE 3713 03:01:12,720 --> 03:01:15,640 FRUSTRATINGLY SLOW OUTCOMES AND 3714 03:01:15,640 --> 03:01:18,120 IT'S CLEAR WE NEED TO DO 3715 03:01:18,120 --> 03:01:18,920 SOMETHING DIFFERENT TO START TO 3716 03:01:18,920 --> 03:01:19,800 SEE RESULTS. 3717 03:01:19,800 --> 03:01:25,840 IT'S A HARD DISEASE TO TACKLE. 3718 03:01:25,840 --> 03:01:26,520 THE COLLABORATIVE EFFORTS COULD 3719 03:01:26,520 --> 03:01:28,200 BE GAME CHANGERS FROM THAT 3720 03:01:28,200 --> 03:01:29,640 STANDPOINT FROM THE ONE THOUGHT 3721 03:01:29,640 --> 03:01:32,360 THEY HAVE TO BE PROPERLY 3722 03:01:32,360 --> 03:01:32,600 RESOURCED. 3723 03:01:32,600 --> 03:01:39,720 TO TAKE BIG AMBITIOUS PLANS AND 3724 03:01:39,720 --> 03:01:41,920 UNDER RESOURCE WILL SLOW US DOWN 3725 03:01:41,920 --> 03:01:43,600 BUT GOING FORWARD THE RIGHT 3726 03:01:43,600 --> 03:01:45,720 PLACE TO GO, WE JUST HAVE TO DO 3727 03:01:45,720 --> 03:01:46,000 IT RIGHT. 3728 03:01:46,000 --> 03:01:55,880 I'LL STOP THERE. 3729 03:01:55,880 --> 03:02:06,400 YOU CAN I'M HUMBLED ON A DAILY 3730 03:02:15,000 --> 03:02:17,800 BASIS BY THE PEOPLE I GET TO 3731 03:02:17,800 --> 03:02:20,360 INTERACT WITH AND I GOT ADVICE 3732 03:02:20,360 --> 03:02:22,080 EARLY ON THAT YOU HAVE TO LEAN 3733 03:02:22,080 --> 03:02:26,040 IN TO THE DISEASE AND I TRIED TO 3734 03:02:26,040 --> 03:02:29,280 DO THAT AND JEFF, YOU GOT FREE 3735 03:02:29,280 --> 03:02:30,240 ADVERTISING TODAY IN TERMS OF 3736 03:02:30,240 --> 03:02:31,880 THE PACKARD CENTER AND TIME 3737 03:02:31,880 --> 03:02:37,240 SPENT ON ALS AND I'M PASSIONATE 3738 03:02:37,240 --> 03:02:42,320 ABOUT THE ISSUE OF WHAT CELLS 3739 03:02:42,320 --> 03:02:44,120 CAN BRING TO THE FULL INDUSTRY 3740 03:02:44,120 --> 03:02:45,880 I'VE BEEN SURPRISED BY HOW 3741 03:02:45,880 --> 03:02:49,040 CONSISTENTLY OVER THE LAST TWO 3742 03:02:49,040 --> 03:02:54,320 DAYS THERE'S BEEN BROAD 3743 03:02:54,320 --> 03:02:56,480 CONSENSUS AROUND THE HYPOTHESIS 3744 03:02:56,480 --> 03:02:59,520 OF NOT ONE FORM OF ALS BUT SUB 3745 03:02:59,520 --> 03:03:02,200 GROUPS AND HOW CAN YOU DETERMINE 3746 03:03:02,200 --> 03:03:08,360 THIS WHEN YOU CAN'T TAKE 3747 03:03:08,360 --> 03:03:10,120 BIOPSIES LIKE CANCER AND USING 3748 03:03:10,120 --> 03:03:13,960 IPS CELLS ARE PART OF THE 3749 03:03:13,960 --> 03:03:14,280 ANSWER. 3750 03:03:14,280 --> 03:03:15,760 THERE ARE INITIATIVES UNDERWAY 3751 03:03:15,760 --> 03:03:17,040 SUCH AS ANSWER ALS TO DO THIS 3752 03:03:17,040 --> 03:03:22,640 BUT WE'RE PROPOSING TO BUILD OFF 3753 03:03:22,640 --> 03:03:27,360 THIS TO CREATE RICH RELATED DATA 3754 03:03:27,360 --> 03:03:29,360 AND BIO FLUID SAMPLES. 3755 03:03:29,360 --> 03:03:30,560 THIS NEED HAS BEEN HIGHLIGHTED 3756 03:03:30,560 --> 03:03:32,200 TIME AND TIME AGAIN BY THE OTHER 3757 03:03:32,200 --> 03:03:35,520 WORK GROUPS OVER THE PAST TWO 3758 03:03:35,520 --> 03:03:41,360 DAYS. 3759 03:03:41,360 --> 03:03:43,560 WHAT IF EVERY PATIENT ENTERING A 3760 03:03:43,560 --> 03:03:45,720 TRIAL YOU CONSISTENTLY CAPTURED 3761 03:03:45,720 --> 03:03:47,520 CLINICAL DATA IN THE GENOME 3762 03:03:47,520 --> 03:03:52,640 SEQUENCE AND BIO FLUID SAMPLES 3763 03:03:52,640 --> 03:03:56,240 AND MORE AND PUT IT ALL ON AN 3764 03:03:56,240 --> 03:03:58,040 OPEN SOURCE PLATFORM FOR 3765 03:03:58,040 --> 03:04:00,960 RESEARCHERS AS WELL AS THE 3766 03:04:00,960 --> 03:04:06,000 PHARMA COMMUNITY TO INTERROGATE 3767 03:04:06,000 --> 03:04:07,400 WITH A.I. AND MACHINE LEARNING 3768 03:04:07,400 --> 03:04:07,840 TECHNOLOGY. 3769 03:04:07,840 --> 03:04:10,920 SOME WILL SAY IT'S TOO 3770 03:04:10,920 --> 03:04:13,040 EXPENSIVE, HOWEVER, IS IT? 3771 03:04:13,040 --> 03:04:17,760 IF YOU COMPARE IT TO THE STATUS 3772 03:04:17,760 --> 03:04:19,960 QUO AND THE EXPENSE OF LOST 3773 03:04:19,960 --> 03:04:21,840 PRODUCTIVITY OF PATIENTS WHO DIE 3774 03:04:21,840 --> 03:04:23,560 EVERY YEAR, THE MASSIVE COST 3775 03:04:23,560 --> 03:04:26,240 INCURED BY THE FAMILIES, 3776 03:04:26,240 --> 03:04:27,240 CAREGIVERS AND HEALTH SYSTEMS TO 3777 03:04:27,240 --> 03:04:28,440 CARE FOR THOSE WHO SUFFER FROM 3778 03:04:28,440 --> 03:04:30,240 THE DISEASE AND THE COST 3779 03:04:30,240 --> 03:04:31,800 ACCUMULATED THROUGH THE YEARS BY 3780 03:04:31,800 --> 03:04:35,080 HUNDREDS OF FAILED DRUG TRIALS. 3781 03:04:35,080 --> 03:04:36,560 I'D ARGUE IT'S AN INVESTMENT WE 3782 03:04:36,560 --> 03:04:40,840 HAVE TO MAKE AND LOOK FORWARD TO 3783 03:04:40,840 --> 03:04:43,080 THE NIH LAYING OUT A PLAN TO 3784 03:04:43,080 --> 03:04:43,960 MOVING IT FORWARD FROM STRATEGY 3785 03:04:43,960 --> 03:04:54,120 AND ACTION. 3786 03:04:54,120 --> 03:04:56,200 IT'S A DIVERSE GROUP AND IT'S 3787 03:04:56,200 --> 03:04:59,200 RULE UNITED IN THESE THREE 3788 03:04:59,200 --> 03:05:01,520 PRIORITIES AS A WAY OF INVESTING 3789 03:05:01,520 --> 03:05:08,760 IN THE FIELD TO MOVE IT FORWARD. 3790 03:05:08,760 --> 03:05:09,800 >>WE'LL MOVE TO THE QUESTION 3791 03:05:09,800 --> 03:05:10,760 AND ANSWER PERIOD NOW AND START 3792 03:05:10,760 --> 03:05:13,320 WITH SOME QUESTIONS THAT WERE 3793 03:05:13,320 --> 03:05:14,600 RECEIVED YESTERDAY. 3794 03:05:14,600 --> 03:05:17,600 THE FIRST ONE IS TO JEFF AND 3795 03:05:17,600 --> 03:05:18,520 DAN. 3796 03:05:18,520 --> 03:05:22,280 HOW WILL YOUR PLANS FOR A ROBUST 3797 03:05:22,280 --> 03:05:23,960 ALS NATURAL HISTORY STUDY 3798 03:05:23,960 --> 03:05:24,480 LEVERAGE EXISTING NATURAL 3799 03:05:24,480 --> 03:05:33,800 HISTORY STUDIES? 3800 03:05:33,800 --> 03:05:36,200 >>THE GROUP DISCUSSED NATURAL 3801 03:05:36,200 --> 03:05:36,560 HISTORY. 3802 03:05:36,560 --> 03:05:43,320 OURS WAS FOCUSSED ON CLINICAL 3803 03:05:43,320 --> 03:05:49,920 DATA. 3804 03:05:49,920 --> 03:05:53,640 AND HOW DO WE INTEGRATE CLINIC 3805 03:05:53,640 --> 03:05:56,840 DATA SETS AND BIO BANKS. 3806 03:05:56,840 --> 03:06:03,000 THIS IS IMPORTANT. 3807 03:06:03,000 --> 03:06:04,520 YOU HEARD ABOUT ANSWER AND MAKE 3808 03:06:04,520 --> 03:06:06,560 SURE THE PATIENTS THAT ARE GOOD 3809 03:06:06,560 --> 03:06:09,280 ABOUT SUPPORTING CLINICAL 3810 03:06:09,280 --> 03:06:10,720 RESEARCH BENEFIT FROM THAT AND 3811 03:06:10,720 --> 03:06:12,880 HAS TO BE CONCERTED EFFORT TO 3812 03:06:12,880 --> 03:06:14,080 INTEGRATE DATA. 3813 03:06:14,080 --> 03:06:16,920 TO BE FAIR IT'S NOT LIKE MERGING 3814 03:06:16,920 --> 03:06:19,080 A BUNCH OF EXCEL SPREAD SHEET. 3815 03:06:19,080 --> 03:06:20,920 HOW DATA IS ANALYZED AND HOW YOU 3816 03:06:20,920 --> 03:06:24,320 CODE AND ONE PERSON CALLS A TIRE 3817 03:06:24,320 --> 03:06:26,480 AND ANOTHER PERSON CALLS A WHEEL 3818 03:06:26,480 --> 03:06:28,920 AND THEY ARE DIFFERENT ENTITIES. 3819 03:06:28,920 --> 03:06:30,560 THAT'S WORK PUTTING DATA 3820 03:06:30,560 --> 03:06:34,160 TOGETHER AND THAT THE NIH CAN 3821 03:06:34,160 --> 03:06:36,400 HELP TREMENDOUSLY ON. 3822 03:06:36,400 --> 03:06:37,800 THEY ALREADY HAVE EXISTING 3823 03:06:37,800 --> 03:06:40,080 DATABASE WHERE'S THEY INITIATED 3824 03:06:40,080 --> 03:06:46,320 THE INTEGRATION OF DATA AND 3825 03:06:46,320 --> 03:06:50,680 THERE'S BEEN EFFORT IN GETTING 3826 03:06:50,680 --> 03:06:51,760 DATA SETS FROM DIFFERENCE 3827 03:06:51,760 --> 03:06:52,080 SOURCES. 3828 03:06:52,080 --> 03:06:58,120 WE DON'T WANT TO DUPLICATE 3829 03:06:58,120 --> 03:06:59,800 EFFORTS, TRUE, BUT WE FIND WAYS 3830 03:06:59,800 --> 03:07:01,400 OF TAKING ADVANTAGE OF THE DATA 3831 03:07:01,400 --> 03:07:03,520 WOULD BE A HIGH PRIORITY BECAUSE 3832 03:07:03,520 --> 03:07:06,480 THEN YOU DON'T HAVE TO REPLICATE 3833 03:07:06,480 --> 03:07:06,720 THINGS. 3834 03:07:06,720 --> 03:07:08,840 THE COMMENT I DISAGREED WITH THE 3835 03:07:08,840 --> 03:07:10,440 REPLICATION OF EXPERIMENTS IS 3836 03:07:10,440 --> 03:07:10,800 CRITICAL. 3837 03:07:10,800 --> 03:07:12,400 SOMETIMES PEOPLE THINK, IF 3838 03:07:12,400 --> 03:07:13,920 SOMEONE MADE A DISCOVERY, WE 3839 03:07:13,920 --> 03:07:16,080 DON'T NEED TO DO IT AGAIN. 3840 03:07:16,080 --> 03:07:17,400 WHY WASTE THE MONEY. 3841 03:07:17,400 --> 03:07:20,200 SCIENCE IS ABOUT REPLICATION. 3842 03:07:20,200 --> 03:07:25,280 THE FIRST OBSERVATION IS STRONG 3843 03:07:25,280 --> 03:07:26,920 BUT IT COMES TO LARGE DATA SETS 3844 03:07:26,920 --> 03:07:28,960 AND INTEGRATING AND I THINK IT'S 3845 03:07:28,960 --> 03:07:39,360 POSSIBLE WITH THE HELP OF NIH. 3846 03:07:39,360 --> 03:07:41,000 >>THE NEXT QUESTION WHICH I 3847 03:07:41,000 --> 03:07:41,920 THINK HAS BEEN TOUCHED ON 3848 03:07:41,920 --> 03:07:46,040 BRIEFLY WE CAN PROBABLY KEEP THE 3849 03:07:46,040 --> 03:07:47,040 RESPONSE BRIEF, IN TRYING TO 3850 03:07:47,040 --> 03:07:48,240 ACCOMPLISH YOUR PRIORITIES, DO 3851 03:07:48,240 --> 03:07:52,760 YOU HAVE ENOUGH DATA OR DO YOU 3852 03:07:52,760 --> 03:07:54,400 NEED TO COLLECT MORE IF YOU NEED 3853 03:07:54,400 --> 03:07:56,080 TO COLLECT MORE HOW SPECIFICALLY 3854 03:07:56,080 --> 03:07:58,840 WILL YOU ENSURE YOUR DATA IS 3855 03:07:58,840 --> 03:08:01,080 AVAILABLE AND USABLE FROM OTHER 3856 03:08:01,080 --> 03:08:01,400 RESEARCHERS? 3857 03:08:01,400 --> 03:08:03,760 THIS IS ONE DAN OR JEFF CAN 3858 03:08:03,760 --> 03:08:04,280 ADDRESS. 3859 03:08:04,280 --> 03:08:06,520 >>WE NEED TO COLLECT A LOT MORE 3860 03:08:06,520 --> 03:08:11,560 DATA. 3861 03:08:11,560 --> 03:08:13,200 WITH THE DISEASE AS HETEROGENOUS 3862 03:08:13,200 --> 03:08:14,600 AS THIS ONE WITH DIFFERENT 3863 03:08:14,600 --> 03:08:20,040 PHENOTYPES WE NEED TO BE ABLE TO 3864 03:08:20,040 --> 03:08:23,240 IDENTIFY THEM AND THAT TAKES 3865 03:08:23,240 --> 03:08:29,160 DATA TO BE COLLECTED IN A VERY 3866 03:08:29,160 --> 03:08:31,280 CONSISTENT MANNER WITH 3867 03:08:31,280 --> 03:08:33,720 CONSISTENT PROTOCOLS. 3868 03:08:33,720 --> 03:08:36,240 AS WE'VE SAID MULTIPLE TIMES, WE 3869 03:08:36,240 --> 03:08:38,600 ALSO BELIEVE THAT DATA HAS TO BE 3870 03:08:38,600 --> 03:08:40,520 OPEN SOURCE. 3871 03:08:40,520 --> 03:08:42,560 IT HAS TO BE AVAILABLE BUT ALSO 3872 03:08:42,560 --> 03:08:45,920 HAS TO BE IN DATABASES THAT ARE 3873 03:08:45,920 --> 03:08:47,720 EASILY INREQUIRABLE SO PEOPLE 3874 03:08:47,720 --> 03:08:48,640 CAN ACTUALLY USE THEM 3875 03:08:48,640 --> 03:08:51,320 EFFECTIVELY. 3876 03:08:51,320 --> 03:08:53,800 >>LISA, CAN I ADD ONE QUICK 3877 03:08:53,800 --> 03:08:55,240 THING TO THAT. 3878 03:08:55,240 --> 03:08:56,560 I THINK NIH ALSO HAS TO FIND A 3879 03:08:56,560 --> 03:08:59,440 WAY TO INCENTIVIZE SCIENTIST TO 3880 03:08:59,440 --> 03:09:07,160 STUDY OR ANALYZE THAT DATA. 3881 03:09:07,160 --> 03:09:10,360 THERE'S A LOT OF RESOURCES AND 3882 03:09:10,360 --> 03:09:14,000 FUNDING TO PUT UP THIS TYPE OF 3883 03:09:14,000 --> 03:09:19,600 DATABASE THE SINGLE LARGEST 3884 03:09:19,600 --> 03:09:22,200 COLLECTION OF PATIENT DATA BUT 3885 03:09:22,200 --> 03:09:24,840 WE NEED PEOPLE TO ANALYZE THE 3886 03:09:24,840 --> 03:09:25,040 DATA. 3887 03:09:25,040 --> 03:09:27,760 IT'S EIGHT OF WORK AND WE WANT 3888 03:09:27,760 --> 03:09:29,760 TO MAKE SURE THAT ALL THAT 3889 03:09:29,760 --> 03:09:35,080 EFFORT IS NOT GOING WASTE. 3890 03:09:35,080 --> 03:09:37,200 WHETHER IT'S SCIENTIST OR A TEAM 3891 03:09:37,200 --> 03:09:39,360 AND DATA CHALLENGES, I THINK 3892 03:09:39,360 --> 03:09:39,920 THAT ANALYSIS NEEDS TO BE 3893 03:09:39,920 --> 03:09:44,840 INCENTIVIZED. 3894 03:09:44,840 --> 03:09:45,000 >> 3895 03:09:45,000 --> 03:09:45,720 >>I AGREE. 3896 03:09:45,720 --> 03:09:48,480 I KNEW THE NEXT PHASE IS WHO'S 3897 03:09:48,480 --> 03:09:52,360 GOING TO PAY THE MONEY TO USE 3898 03:09:52,360 --> 03:10:02,920 THE DATA AND NIH CAN PUT OUT AN 3899 03:10:03,840 --> 03:10:07,320 RFA SPECIFICALLY FOR USING 3900 03:10:07,320 --> 03:10:10,000 EXISTING DATA SETS AND OTHER 3901 03:10:10,000 --> 03:10:11,440 ORGANIZATIONS PUT TOGETHER A 3902 03:10:11,440 --> 03:10:13,720 LIST AND SAY COME TOGETHER WITH 3903 03:10:13,720 --> 03:10:16,320 EXPERIMENTS BASED ON USING SOME 3904 03:10:16,320 --> 03:10:17,760 OF THAT DATA RATHER THAN 3905 03:10:17,760 --> 03:10:18,000 WAITING. 3906 03:10:18,000 --> 03:10:22,360 AND DAN'S RIGHT, WE NEED MORE 3907 03:10:22,360 --> 03:10:24,240 DATA BUT THERE'S A LOT OF THAT 3908 03:10:24,240 --> 03:10:25,640 COULD BE INCREDIBLY USEFUL. 3909 03:10:25,640 --> 03:10:28,480 >>NOW WE'LL MOVE INTO A COUPLE 3910 03:10:28,480 --> 03:10:30,640 QUESTIONS THAT RELATE TO 3911 03:10:30,640 --> 03:10:31,480 AWARENESS OF ALS. 3912 03:10:31,480 --> 03:10:32,600 AND DAN, YOU WERE GOING TO TAKE 3913 03:10:32,600 --> 03:10:33,080 THOSE. 3914 03:10:33,080 --> 03:10:36,320 >>OKAY. 3915 03:10:36,320 --> 03:10:39,840 >>THE MONTH OF MAY IS ALS 3916 03:10:39,840 --> 03:10:41,560 AWARENESS MONTH. 3917 03:10:41,560 --> 03:10:44,240 IN 2022 BOTH CNN AND FOX NEWS 3918 03:10:44,240 --> 03:10:46,320 WEBSITES DON'T HAVE STORIES 3919 03:10:46,320 --> 03:10:48,440 ABOUT MAY BEING ALS AWARENESS 3920 03:10:48,440 --> 03:10:48,640 MONTH. 3921 03:10:48,640 --> 03:10:51,120 THE ORGANIZATIONS NEED TO MAKE A 3922 03:10:51,120 --> 03:10:53,840 GREATER EFFORT IN GETTING THE 3923 03:10:53,840 --> 03:10:54,440 WORD OUT. 3924 03:10:54,440 --> 03:10:56,560 I'VE RECEIVED LOTS OF E-MAILS 3925 03:10:56,560 --> 03:10:58,720 FROM ALS AND NEUROLOGICAL 3926 03:10:58,720 --> 03:11:00,440 ORGANIZATIONS ABOUT MAY BEING 3927 03:11:00,440 --> 03:11:02,040 ALS AWARENESS MONTH HOWEVER, THE 3928 03:11:02,040 --> 03:11:04,160 WRONG PEOPLE ARE BEING TARGETED. 3929 03:11:04,160 --> 03:11:09,240 PEOPLE WITH ALS ALREADY KNOW 3930 03:11:09,240 --> 03:11:13,360 ABOUT ALS. 3931 03:11:13,360 --> 03:11:19,520 AND THERE'S AAGE BEING SENT TO 3932 03:11:19,520 --> 03:11:30,040 THEM AND THANK YOU TO WHO RAISED 3933 03:11:35,880 --> 03:11:36,400 THE ISSUE. 3934 03:11:36,400 --> 03:11:38,840 IT'S A FRUSTRATING SITUATION AND 3935 03:11:38,840 --> 03:11:44,360 I AGREE 100% THAT FAMILIES 3936 03:11:44,360 --> 03:11:46,120 IMPACTED BY ALS SHOULD NOT BE 3937 03:11:46,120 --> 03:11:50,480 THE TARGET OF AWARENESS 3938 03:11:50,480 --> 03:11:51,720 CAMPAIGNS AND ONE THING IS THAT 3939 03:11:51,720 --> 03:11:56,680 IN MANY CASES IN ALL HONESTY, WE 3940 03:11:56,680 --> 03:11:57,200 MEAN FUND-RAISING. 3941 03:11:57,200 --> 03:11:58,920 WHICH IS AN EVEN STRONGER REASON 3942 03:11:58,920 --> 03:12:05,320 AS TO WHY THOSE IMPACTED BY ALS 3943 03:12:05,320 --> 03:12:07,200 SHOULD NOT BE TARGETED AND I'VE 3944 03:12:07,200 --> 03:12:09,080 ASKED THE QUESTION OF A FEW 3945 03:12:09,080 --> 03:12:09,440 ORGANIZATIONS. 3946 03:12:09,440 --> 03:12:11,880 WHY ARE WE NOT GOING OUT IN THE 3947 03:12:11,880 --> 03:12:17,640 WORLD TO SPREAD AWARENESS. 3948 03:12:17,640 --> 03:12:28,160 AND FROM WHAT I UNDERSTAND AND 3949 03:12:33,800 --> 03:12:35,760 THOUGHT NEEDS TO GO TO MAKE ALS 3950 03:12:35,760 --> 03:12:36,920 RELATABLE TO PEOPLE OUTSIDE OF 3951 03:12:36,920 --> 03:12:41,760 OUR COMMUNITY. 3952 03:12:41,760 --> 03:12:50,280 THEY WOULD NEED TO UNDERSTAND WE 3953 03:12:50,280 --> 03:12:52,600 LIKE TO SHOW THE EXTREMITY OF 3954 03:12:52,600 --> 03:12:56,320 THE DISEASE BECAUSE IT'S SO 3955 03:12:56,320 --> 03:12:56,760 EXTREME. 3956 03:12:56,760 --> 03:12:58,120 AND OTHERS CAN'T NECESSARILY 3957 03:12:58,120 --> 03:12:59,080 RELATE TO US. 3958 03:12:59,080 --> 03:13:01,040 WE BECOME THEN AND THEY HAVE 3959 03:13:01,040 --> 03:13:04,320 CAUSES AND THINGS THAT THEY DO 3960 03:13:04,320 --> 03:13:07,320 RELATE TO THAT DO IMPACT THEIR 3961 03:13:07,320 --> 03:13:09,400 FAMILIES SO THAT WOULD BE WHAT 3962 03:13:09,400 --> 03:13:12,160 THEY CHOOSE TO FOCUS ON. 3963 03:13:12,160 --> 03:13:16,600 TO ME, FUNDING PUTS IT TO A 3964 03:13:16,600 --> 03:13:17,400 JOINT COMMUNICATIONS CAMPAIGN 3965 03:13:17,400 --> 03:13:20,920 BETWEEN THE PUBLIC AND PRIVATE 3966 03:13:20,920 --> 03:13:21,480 SECTORS WOULD BE A POWERFUL 3967 03:13:21,480 --> 03:13:31,600 SPEND. 3968 03:13:42,480 --> 03:13:51,040 AND CAN YOU MAKE THE CAMPAIGN 3969 03:13:51,040 --> 03:14:01,560 WITH POP CELEBRITIYSS AND 3970 03:14:01,960 --> 03:14:02,880 INVESTORS AND I THINK I 3971 03:14:02,880 --> 03:14:03,680 UNDERSTAND THE BASIS. 3972 03:14:03,680 --> 03:14:05,760 WE WANT TO USE THE PUBLIC'S 3973 03:14:05,760 --> 03:14:08,680 ADORATION OF THOSE THEY KNOW 3974 03:14:08,680 --> 03:14:09,600 IMPACTED BY ALS IN ORDER TO MAKE 3975 03:14:09,600 --> 03:14:18,000 IT INTERESTING. 3976 03:14:18,000 --> 03:14:28,560 AND WHERE WOULD THEY DONATE AND 3977 03:14:32,760 --> 03:14:41,120 TO WHOM AND ARE YET TO HAVE A 3978 03:14:41,120 --> 03:14:42,720 LARGE ORGANIZED AWARENESS FUND 3979 03:14:42,720 --> 03:14:43,840 RAISING EFFORT BECAUSE THE TRUTH 3980 03:14:43,840 --> 03:14:47,000 IS MUCH OF THE WORK DONE IN OUR 3981 03:14:47,000 --> 03:14:49,000 COMMUNITY ORGANIZATION IS DONE 3982 03:14:49,000 --> 03:14:53,240 THROUGH FUNDING THAT'S BEEN O 3983 03:14:53,240 --> 03:14:54,920 ORGANIZED BY THAT ORGANIZATION 3984 03:14:54,920 --> 03:14:55,640 DIRECTLY. 3985 03:14:55,640 --> 03:14:56,520 AND PERHAPS YOU WANT TO EDUCATE 3986 03:14:56,520 --> 03:15:00,520 THE PUBLIC ABOUT THE DISEASE IS 3987 03:15:00,520 --> 03:15:03,480 A FAIR AND WORTHY CAUSE AND 3988 03:15:03,480 --> 03:15:04,480 SOMETHING ALL ORGANIZATIONS 3989 03:15:04,480 --> 03:15:08,080 CONTRIBUTE TO AND IT CAN ALSO 3990 03:15:08,080 --> 03:15:10,280 LEAD TO LARGE PUBLIC/PRIVATE 3991 03:15:10,280 --> 03:15:11,920 DONORS NOT NECESSARILY IN THE 3992 03:15:11,920 --> 03:15:12,640 PUBLIC EYE. 3993 03:15:12,640 --> 03:15:15,520 SHARON, DO YOU WANT TO ADD TO 3994 03:15:15,520 --> 03:15:19,000 THAT? 3995 03:15:19,000 --> 03:15:22,200 >>THAT WAS A PRETTY COMPLETE 3996 03:15:22,200 --> 03:15:24,560 RESPONSE AND THE THING THAT HAS 3997 03:15:24,560 --> 03:15:27,000 DONE MOST TO RAISE AWARENESS WAS 3998 03:15:27,000 --> 03:15:28,600 THE ICE BUCKET CHALLENGE. 3999 03:15:28,600 --> 03:15:30,680 IT GOT THE WORD OUT BUT I'M NOT 4000 03:15:30,680 --> 03:15:32,320 SURE PEOPLE UNDERSTOOD THE 4001 03:15:32,320 --> 03:15:32,560 DISEASE. 4002 03:15:32,560 --> 03:15:34,880 IF THERE'S SOME WAY TO PAIR THAT 4003 03:15:34,880 --> 03:15:36,160 AWARENESS WITH TRUE 4004 03:15:36,160 --> 03:15:37,320 UNDERSTANDING AND I THINK THE 4005 03:15:37,320 --> 03:15:41,280 POINT THAT WAS MADE WAS REALLY 4006 03:15:41,280 --> 03:15:42,840 GOOD THAT HAVING HAVING A 4007 03:15:42,840 --> 03:15:45,040 SPECIFIC COORDINATED GOAL FOR 4008 03:15:45,040 --> 03:15:50,200 WHICH YOU'RE RAISING FUNDS MIGHT 4009 03:15:50,200 --> 03:15:51,320 MOTIVATE THAT LARGE GIVING THAT 4010 03:15:51,320 --> 03:15:59,160 I THINK WE NEED TO SEE AND MAY 4011 03:15:59,160 --> 03:16:03,080 ATTRACT CELEBRITIES WHO MAY BE 4012 03:16:03,080 --> 03:16:05,080 DRAWN TO THE CAUSE. 4013 03:16:05,080 --> 03:16:06,840 HAVING THAT COORDINATED EFFORT 4014 03:16:06,840 --> 03:16:08,640 MAY HELP AND THE ICE BUCKET 4015 03:16:08,640 --> 03:16:10,440 CHALLENGE GOT US PART WAY THERE 4016 03:16:10,440 --> 03:16:15,080 AND NEED TO PAIR THAT WITH THIS 4017 03:16:15,080 --> 03:16:17,040 COORDINATED PLAN AND UNDERSTAND 4018 03:16:17,040 --> 03:16:18,800 THE LIVED EXPERIENCE OF ALS FOR 4019 03:16:18,800 --> 03:16:19,080 THE PUBLIC. 4020 03:16:19,080 --> 03:16:29,360 >>THANK YOU. 4021 03:16:40,440 --> 03:16:42,720 >>THIS QUESTION HAS TO DO IN 4022 03:16:42,720 --> 03:16:47,480 WITH FRAGMENTATION AND SILOING 4023 03:16:47,480 --> 03:16:49,480 OF THE RESEARCH WORK AND GOING 4024 03:16:49,480 --> 03:16:50,640 TO PROGRAMS THAT LACK THE 4025 03:16:50,640 --> 03:16:50,960 COLLABORATION. 4026 03:16:50,960 --> 03:16:52,880 WHAT ARE THOUGHTS ON HOW TO 4027 03:16:52,880 --> 03:16:57,160 ENCOURAGE ALS FUNDING 4028 03:16:57,160 --> 03:16:57,840 ORGANIZATIONS TO REQUIRE 4029 03:16:57,840 --> 03:16:58,720 INTERNATIONAL COLLABORATIONS AND 4030 03:16:58,720 --> 03:17:01,960 WHAT ARE THE BARRIERS FOR 4031 03:17:01,960 --> 03:17:02,400 COLLABORATIONS. 4032 03:17:02,400 --> 03:17:03,800 PERHAPS, ANDREA YOU CAN START 4033 03:17:03,800 --> 03:17:09,000 WITH YOUR THOUGHTS ON THAT. 4034 03:17:09,000 --> 03:17:12,040 >>THIS IS A BIG QUESTION AND I 4035 03:17:12,040 --> 03:17:13,920 KNOW ADAM AND JEFF WILL JUMP 4036 03:17:13,920 --> 03:17:14,680 INTO THIS. 4037 03:17:14,680 --> 03:17:17,200 I BELIEVE FUNDING ORGANIZATION 4038 03:17:17,200 --> 03:17:19,440 INCLUDING NIH ARE MOVING, NOT 4039 03:17:19,440 --> 03:17:22,280 UNIVERSALLY BUT MOVING THE 4040 03:17:22,280 --> 03:17:23,080 DIRECTION OF REQUIRING 4041 03:17:23,080 --> 03:17:23,440 COLLABORATION. 4042 03:17:23,440 --> 03:17:26,080 WE HAVE TO DEFINE WHAT THAT IS. 4043 03:17:26,080 --> 03:17:28,080 I WANT TO GET BACK TO THAT IN A 4044 03:17:28,080 --> 03:17:28,320 MOMENT. 4045 03:17:28,320 --> 03:17:29,720 THERE'S AN IMPORTANT NEED TO 4046 03:17:29,720 --> 03:17:31,360 HAVE OUTREACH INTO DIFFERENT 4047 03:17:31,360 --> 03:17:32,440 FIELD TO RESEARCH ALS. 4048 03:17:32,440 --> 03:17:33,200 I THINK DAN TALKED ABOUT THIS 4049 03:17:33,200 --> 03:17:35,880 EARLIER. 4050 03:17:35,880 --> 03:17:39,840 WE HAVE TO LOOK AT NATIONAL 4051 03:17:39,840 --> 03:17:41,960 COLLABORATION FIRST AND WE'LL 4052 03:17:41,960 --> 03:17:43,040 TALK ABOUT INTERNATIONAL AS 4053 03:17:43,040 --> 03:17:43,280 WELL. 4054 03:17:43,280 --> 03:17:45,200 AND I THINK THIS CAN BEST BE 4055 03:17:45,200 --> 03:17:46,800 ACCOMPLISHED BY SOMETHING WE 4056 03:17:46,800 --> 03:17:48,040 IDENTIFIED IN OUR THIRD PRIORITY 4057 03:17:48,040 --> 03:17:50,280 WHICH IS CREATING A 4058 03:17:50,280 --> 03:17:51,280 COMPREHENSIVE RESEARCH 4059 03:17:51,280 --> 03:17:51,560 LANDSCAPE. 4060 03:17:51,560 --> 03:17:53,680 SO THE POINT OF THAT WOULD BE TO 4061 03:17:53,680 --> 03:17:55,600 CAPTURE AND IDENTIFY ALL THE 4062 03:17:55,600 --> 03:17:56,320 AREAS IN WHICH RESEARCH IS 4063 03:17:56,320 --> 03:17:59,480 CURRENTLY TAKING PLACE. 4064 03:17:59,480 --> 03:18:02,520 NOT THAT RESEARCHERS DON'T KNOW 4065 03:18:02,520 --> 03:18:05,320 WHO'S LAB IS DOING WHAT WORK BUT 4066 03:18:05,320 --> 03:18:09,400 DO THE BIOTECH FIRMS AND V.C. 4067 03:18:09,400 --> 03:18:12,920 FIRMS DO THEY KNOW AS THEY DO 4068 03:18:12,920 --> 03:18:15,720 PRE-CLINICAL WORK WHO IS DOING 4069 03:18:15,720 --> 03:18:17,360 WORK IN DIFFERENT AREAS? 4070 03:18:17,360 --> 03:18:22,680 WE NEED A TRANSPARENCY INTO THE 4071 03:18:22,680 --> 03:18:22,920 PROCESS. 4072 03:18:22,920 --> 03:18:24,000 WHO'S DOING WORK AND WHAT AREAS 4073 03:18:24,000 --> 03:18:28,680 ARE THEY WORKING ON SO OTHER 4074 03:18:28,680 --> 03:18:29,880 RESEARCHERS AND FUNDERS CAN MOVE 4075 03:18:29,880 --> 03:18:40,360 FORWARD MORE EFFECTIVELY. 4076 03:18:49,400 --> 03:18:51,600 >>NIH GRANTS ARE BUILT AROUND 4077 03:18:51,600 --> 03:18:53,160 COLLABORATION AND THE NIH 4078 03:18:53,160 --> 03:18:54,160 RECENTLY PUT OUT GRANTS WHERE 4079 03:18:54,160 --> 03:18:56,080 YOU HAVE TO HAVE MULTIPLE 4080 03:18:56,080 --> 03:18:57,440 TECHNIQUES TOGETHER, NOT UNIQUE 4081 03:18:57,440 --> 03:19:00,280 TO ALS BUT THE CONCEPT OF 4082 03:19:00,280 --> 03:19:01,760 COLLABORATION HAS BEEN LONG 4083 03:19:01,760 --> 03:19:05,360 BUILT INTO MANY NIH AS THE MAJOR 4084 03:19:05,360 --> 03:19:05,760 FUNDER. 4085 03:19:05,760 --> 03:19:07,080 OF COURSE I BELIEVE WE SHOULD 4086 03:19:07,080 --> 03:19:12,240 ENCOURAGE COLLABORATION BUT THE 4087 03:19:12,240 --> 03:19:15,720 ORGANIZATION HAVE NOT BEEN 4088 03:19:15,720 --> 03:19:16,400 COLLABORATING WELL AND ALMOST 4089 03:19:16,400 --> 03:19:20,840 EVERYONE HERE ON THE GROUP FROM 4090 03:19:20,840 --> 03:19:22,200 DIFFERENT ORGANIZATIONS FOUND 4091 03:19:22,200 --> 03:19:24,240 WAYS TO COLLABORATE AND SHARE 4092 03:19:24,240 --> 03:19:25,600 CO-FUNDING MAKING MONEY GO 4093 03:19:25,600 --> 03:19:27,440 LONGER WHICH IS VERY IMPORTANT. 4094 03:19:27,440 --> 03:19:30,000 IT'S HARD TO MANDATE 4095 03:19:30,000 --> 03:19:34,720 COLLABORATION FOR A LOT OF 4096 03:19:34,720 --> 03:19:41,080 COMPANIES AND YET AND THERE'S 4097 03:19:41,080 --> 03:19:44,480 ALWAYS GOING TO BE OCCASIONAL 4098 03:19:44,480 --> 03:19:45,840 SILOS AND PHARMA WITH A 4099 03:19:45,840 --> 03:19:46,840 DIFFERENT FUNDING SOURCE AND 4100 03:19:46,840 --> 03:19:49,880 INTERESTED IN RELYING ON US TO 4101 03:19:49,880 --> 03:19:51,760 GET ACADEMICS AND TARGET HAS 4102 03:19:51,760 --> 03:19:53,440 DONE THAT AND I'D LOVE TO SEE 4103 03:19:53,440 --> 03:19:55,320 THAT EXPAND NOT TO TAKE AWAY 4104 03:19:55,320 --> 03:19:59,240 FROM TARGET BUT THEY HAVE TOOLS. 4105 03:19:59,240 --> 03:20:00,840 YOU'RE BRINGING IN A TINY 4106 03:20:00,840 --> 03:20:03,760 COMMUNITY TO THE BENCH OF 4107 03:20:03,760 --> 03:20:07,680 ACADEMICS WHERE DISCOVERIES 4108 03:20:07,680 --> 03:20:07,880 OCCUR. 4109 03:20:07,880 --> 03:20:09,880 IT'S IT'S ALL THE ORGANIZATIONS 4110 03:20:09,880 --> 03:20:11,280 AND THE NOVEL APPROACHES 4111 03:20:11,280 --> 03:20:20,160 ORGANIZATIONS CAN BRING TO THIS. 4112 03:20:20,160 --> 03:20:22,160 >>COLLABORATION IS NOT JUST A 4113 03:20:22,160 --> 03:20:24,760 CHALLENGE IN THE WORLD OF ALS 4114 03:20:24,760 --> 03:20:25,400 BUT EVERY BUSINESS. 4115 03:20:25,400 --> 03:20:27,480 I FOUND THROUGH THE YEARS THAT 4116 03:20:27,480 --> 03:20:32,440 GREAT INNOVATION COMES FROM 4117 03:20:32,440 --> 03:20:42,400 GREAT COLLABORATION AND IT'S NOT 4118 03:20:42,400 --> 03:20:43,640 THE PEOPLE ARE NOT GOOD PEOPLE 4119 03:20:43,640 --> 03:20:47,320 BUT IT'S HOW THEY'RE MEASURED. 4120 03:20:47,320 --> 03:20:49,520 THEY'RE TO BRING FUNDING BACK TO 4121 03:20:49,520 --> 03:20:51,280 THE INSTITUTION NOT MEASURED ON 4122 03:20:51,280 --> 03:20:53,160 WHAT THEY DO TO DRIVE 4123 03:20:53,160 --> 03:20:53,800 COLLABORATIVE EFFORTS ACROSS THE 4124 03:20:53,800 --> 03:21:03,720 COMMUNITY. 4125 03:21:03,720 --> 03:21:06,200 AND THEY MAKE IT A CONDITION OF 4126 03:21:06,200 --> 03:21:06,560 ENGAGEMENT. 4127 03:21:06,560 --> 03:21:09,080 JEFF TALKED ABOUT THE PACKARD 4128 03:21:09,080 --> 03:21:10,520 CENTER BUT WITH ANSWER ALS TO 4129 03:21:10,520 --> 03:21:13,520 PARTICIPATE YOU HAD TO AGREE TO 4130 03:21:13,520 --> 03:21:14,600 FOLLOW A COMMON PROCESS AND 4131 03:21:14,600 --> 03:21:16,880 AGREE TO PUT THE DATA ON OPEN 4132 03:21:16,880 --> 03:21:17,440 SOURCE PLATFORM. 4133 03:21:17,440 --> 03:21:20,240 YOU HAD TO AGREE YOU'D PUT THE 4134 03:21:20,240 --> 03:21:22,320 DATA OUT THERE WITH NO DELAY. 4135 03:21:22,320 --> 03:21:26,200 THE EXTERNAL WORLD GOT THE DATA 4136 03:21:26,200 --> 03:21:28,240 AS QUICKLY AS THE INTERNAL WORLD 4137 03:21:28,240 --> 03:21:31,920 AND PEOPLE IN THIS SPACE DO WANT 4138 03:21:31,920 --> 03:21:35,040 TO COLLABORATE AND THEY BOUGHT. 4139 03:21:35,040 --> 03:21:38,840 WE GOT 24 RESEARCH CENTER AND 4140 03:21:38,840 --> 03:21:40,840 100 P.I.s. 4141 03:21:40,840 --> 03:21:43,240 INHERENTLY THE PEOPLE IN THE 4142 03:21:43,240 --> 03:21:44,640 SPACE ARE WILLING TO DO THE 4143 03:21:44,640 --> 03:21:46,040 RIGHT THING AND WILLING TO 4144 03:21:46,040 --> 03:21:46,320 COLLABORATE. 4145 03:21:46,320 --> 03:21:51,040 THE FUNDERS, PACKARD CENTER, 4146 03:21:51,040 --> 03:21:52,960 TARGET, NIH, WE HAVE TO DO A 4147 03:21:52,960 --> 03:21:55,000 BETTER JOB OF MAKING 4148 03:21:55,000 --> 03:21:55,680 COLLABORATION A CONDITION EF THE 4149 03:21:55,680 --> 03:22:05,760 FUNDING. 4150 03:22:05,760 --> 03:22:08,000 >>ARE THERE ANY INITIATIVES OR 4151 03:22:08,000 --> 03:22:09,880 RECOMMENDATIONS SPECIFICALLY 4152 03:22:09,880 --> 03:22:14,360 ORIENTED TO HARNESS THE 4153 03:22:14,360 --> 03:22:21,440 CONTRIBUTION AND POTENTIATE THE 4154 03:22:21,440 --> 03:22:22,680 IMPACT OF RESEARCH IN COUNTRIES 4155 03:22:22,680 --> 03:22:26,400 AND I'M AFRAID WE MAY BE MISSING 4156 03:22:26,400 --> 03:22:29,440 IMPORTANT INFORMATION FROM 4157 03:22:29,440 --> 03:22:30,760 SOURCES OUTSIDE WEALTHIER 4158 03:22:30,760 --> 03:22:31,120 COUNTRIES. 4159 03:22:31,120 --> 03:22:32,520 I COULD NOT SEE A CLEAR 4160 03:22:32,520 --> 03:22:34,400 INDICATION OF THIS IN THE DRAFT 4161 03:22:34,400 --> 03:22:44,920 AND MAY NEED A SEPARATE FOCUS. 4162 03:22:47,080 --> 03:22:56,600 >>IF WE COULD HAVE TRIALS IN 4163 03:22:56,600 --> 03:22:58,680 PARTS PART OF THE WORLD IT WOULD 4164 03:22:58,680 --> 03:22:59,560 ACCELERATE TRIALS. 4165 03:22:59,560 --> 03:23:02,160 THERE'S A LOT OF TO DO ON THAT 4166 03:23:02,160 --> 03:23:03,120 FRONT. 4167 03:23:03,120 --> 03:23:04,920 WE BOTH ON THE INTERNATIONAL 4168 03:23:04,920 --> 03:23:06,680 ALLIANCE OF ALS AND AND 4169 03:23:06,680 --> 03:23:07,960 COMMITTEES AND THE INTERNATIONAL 4170 03:23:07,960 --> 03:23:11,000 ALLIANCE HAS BEEN TALKING 4171 03:23:11,000 --> 03:23:13,320 SERIOUSLY ABOUT DEVELOPING 4172 03:23:13,320 --> 03:23:21,600 INFRASTRUCTURE IN THAT UNDER 4173 03:23:21,600 --> 03:23:28,320 DEVELOPED AREAS AND THE IDEA IS 4174 03:23:28,320 --> 03:23:33,680 THAT EVEN THINGS LIKE COLLECTING 4175 03:23:33,680 --> 03:23:36,240 DNA SAMPLES TO WHOLE GENOME 4176 03:23:36,240 --> 03:23:37,000 SEQUENCING, SOME AREAS DON'T 4177 03:23:37,000 --> 03:23:47,480 HAVE THE PROTOCOLS IN PLACE. 4178 03:23:47,480 --> 03:23:49,800 OR MAY NOT HAVE MINUS 20 4179 03:23:49,800 --> 03:23:51,960 FREEZERS TO PUT THE DNA SAMPLES 4180 03:23:51,960 --> 03:23:54,440 IN LET ALONE INFRASTRUCTURE TO 4181 03:23:54,440 --> 03:23:59,120 DO THE ANALYSIS OF WHOLE GENOME 4182 03:23:59,120 --> 03:24:00,480 SEQUENCING AND SHARING THE DATA. 4183 03:24:00,480 --> 03:24:03,920 THERE'S A LOT TO BE DONE AND 4184 03:24:03,920 --> 03:24:05,000 INTERNATIONAL ALLIANCE AND 4185 03:24:05,000 --> 03:24:10,040 ORGANIZATIONS CAN TAKE THE 4186 03:24:10,040 --> 03:24:11,520 LEADERSHIP IN DRIVING 4187 03:24:11,520 --> 03:24:15,640 INFRASTRUCTURE ACROSS UNDER 4188 03:24:15,640 --> 03:24:16,840 REPRESENTED AREASES WE CAN 4189 03:24:16,840 --> 03:24:24,800 ACCELERATE RESEARCH. 4190 03:24:24,800 --> 03:24:27,240 >>WITH COUNT RIS AND INDIA HAVE 4191 03:24:27,240 --> 03:24:35,280 UNIQUE AND POWER DRUG THERAPY 4192 03:24:35,280 --> 03:24:38,640 LIKE TRADITIONAL CHINESE HERBAL 4193 03:24:38,640 --> 03:24:42,040 MEDICINE AND AYURVEDIC AND WHAT 4194 03:24:42,040 --> 03:24:45,360 PURSUIT HAS BEEN DONE WITH 4195 03:24:45,360 --> 03:24:47,520 COLLABORATIONS TO IDENTIFY 4196 03:24:47,520 --> 03:24:57,840 POTENTIAL THERAPIES? 4197 03:25:02,400 --> 03:25:04,920 THE NIH HAS PROGRAMS OPEN TO 4198 03:25:04,920 --> 03:25:08,240 INTERNATIONAL APPLICANTS SO 4199 03:25:08,240 --> 03:25:09,120 INVESTIGATORS ARE CHINA AND 4200 03:25:09,120 --> 03:25:11,120 INDIA ARE ALWAYS WELCOME TO 4201 03:25:11,120 --> 03:25:14,720 APPLY AND SOME OF THOSE IDEAS, 4202 03:25:14,720 --> 03:25:17,960 AYURVEDIC THERAPIES AND CURCUMIN 4203 03:25:17,960 --> 03:25:21,360 IS BEING TESTED NOW IN A TRIAL. 4204 03:25:21,360 --> 03:25:23,480 AGAIN, WE WANT ENGAGEMENT AND 4205 03:25:23,480 --> 03:25:24,880 IT'S A COMPLEX DISEASE. 4206 03:25:24,880 --> 03:25:27,120 WE WANT ENGAGEMENT FROM EVERY 4207 03:25:27,120 --> 03:25:28,280 PART OF THE WORLD. 4208 03:25:28,280 --> 03:25:29,440 NO MATTER WHERE THE GOOD IDEA 4209 03:25:29,440 --> 03:25:38,760 COMES FROM. 4210 03:25:38,760 --> 03:25:42,080 >>I'VE SEEN LITTLE EFFORT IN 4211 03:25:42,080 --> 03:25:42,880 THE U.S. RESEARCH SPACE TAKING 4212 03:25:42,880 --> 03:25:47,520 ADVANTAGE OF THAT. 4213 03:25:47,520 --> 03:25:49,920 THE CLOSEST COMES BACK TO THE 4214 03:25:49,920 --> 03:25:52,480 TARGETED ENGAGEMENT COMPANIES 4215 03:25:52,480 --> 03:25:57,360 AND THEY COME THROUGH US TO 4216 03:25:57,360 --> 03:25:59,760 DESIGN DRUG TRIALS BUT I'VE NOT 4217 03:25:59,760 --> 03:26:02,240 YET SEEN MUCH. 4218 03:26:02,240 --> 03:26:06,560 IF IT'S AN UNTAPPED OPPORTUNITY 4219 03:26:06,560 --> 03:26:13,320 WE SHOULD LOOK INTO IT. 4220 03:26:13,320 --> 03:26:14,200 WE HAD ONE MORE QUESTION. 4221 03:26:14,200 --> 03:26:18,040 >>THE QUESTION IS HOW DO YOU 4222 03:26:18,040 --> 03:26:20,200 FOSTER INDUSTRY, ACADEMIC, NON 4223 03:26:20,200 --> 03:26:30,560 PROFIT PARTNERSHIPS? 4224 03:26:35,040 --> 03:26:37,960 THE TARGET ALS MODEL. 4225 03:26:37,960 --> 03:26:38,800 WE TAKE INDUSTRY IN EVERYTHING 4226 03:26:38,800 --> 03:26:42,560 WE DO AND 50% OF OUR BOARD AND 4227 03:26:42,560 --> 03:26:43,800 OUR INDEPENDENT REVIEW COMMITTEE 4228 03:26:43,800 --> 03:26:49,560 WHICH MAKES EVERY DECISION ON 4229 03:26:49,560 --> 03:26:53,520 FUNDING. 4230 03:26:53,520 --> 03:27:00,360 THEY LED 50% OF THE CONSORTIA 4231 03:27:00,360 --> 03:27:02,360 WHICH HAS BEEN A SUCCESSFUL 4232 03:27:02,360 --> 03:27:08,400 MODEL AND FUNDED 41 CONSORTIA 4233 03:27:08,400 --> 03:27:12,560 AND SOME HAVE LED TO DRUG 4234 03:27:12,560 --> 03:27:14,120 DISCOVERY PROGRAMS BY 4235 03:27:14,120 --> 03:27:19,480 PHARMACEUTICAL OR BIO TECH 4236 03:27:19,480 --> 03:27:22,360 COMPANIES. 4237 03:27:22,360 --> 03:27:25,520 WE ACT AS A MATCH MAKER AND WE 4238 03:27:25,520 --> 03:27:27,480 STARTED AN INITIATIVE AND TALK 4239 03:27:27,480 --> 03:27:32,720 ABOUT BIOMARKERS AND HOW 4240 03:27:32,720 --> 03:27:34,640 IMPORTANT THEY WERE WAS TALKED 4241 03:27:34,640 --> 03:27:36,400 ABOUT YESTERDAY AND WE BROUGHT 4242 03:27:36,400 --> 03:27:38,640 TOGETHER 14 COMPANIES AND 10 4243 03:27:38,640 --> 03:27:41,640 ACADEMIC CENTERS, SIX ALS, 4244 03:27:41,640 --> 03:27:45,000 NONPROFITS AND TWO VENTURE 4245 03:27:45,000 --> 03:27:47,040 CAPITAL FIRMS TO DESIGN AN 4246 03:27:47,040 --> 03:27:48,560 EFFORT TO FOCUS ON BIOMARKERS A 4247 03:27:48,560 --> 03:27:54,560 COUPLE YEARS AGO AND WE MADE 4248 03:27:54,560 --> 03:27:55,120 TOGETHER A LOT OF PROGRESS. 4249 03:27:55,120 --> 03:28:03,160 THE KEY THING IS CLEAR DESIGN OF 4250 03:28:03,160 --> 03:28:09,160 PROGRAMS, LOW EGO WHICH IS 4251 03:28:09,160 --> 03:28:11,520 CRITICAL AND EFFECTIVE FUNDING 4252 03:28:11,520 --> 03:28:16,760 AND CLEAR SHARING OF INFORMATION 4253 03:28:16,760 --> 03:28:22,960 WITHIN THOSE CONSORTIA AND 4254 03:28:22,960 --> 03:28:25,240 PEOPLE ARE WILLING TO PLAY AND 4255 03:28:25,240 --> 03:28:26,640 IT'S A COMPELLING MODEL AND 4256 03:28:26,640 --> 03:28:27,280 OTHER ORGANIZATIONS HAVE DONE 4257 03:28:27,280 --> 03:28:37,440 THE SAME. 4258 03:28:39,760 --> 03:28:43,880 ONE THING WE SEE IN OTHER NIH 4259 03:28:43,880 --> 03:28:46,760 COLLABORATION AND THE AMP FOR 4260 03:28:46,760 --> 03:28:49,160 OTHER DISEASES AND OTHER ONES IS 4261 03:28:49,160 --> 03:28:54,560 THE NIH CAN BRING IN THE 4262 03:28:54,560 --> 03:28:56,240 REGULATORY PARTNERS WHICH ARE 4263 03:28:56,240 --> 03:28:57,800 MOURN STAKEHOLDERS AND BRING 4264 03:28:57,800 --> 03:28:59,880 TOGETHER ACADEMIC AND INDUSTRY 4265 03:28:59,880 --> 03:29:01,360 BECAUSE OF THE IMPORTANT ROLE 4266 03:29:01,360 --> 03:29:02,720 THEY PLAY IN THE OUTCOME OF ALL 4267 03:29:02,720 --> 03:29:09,800 THIS RESEARCH. 4268 03:29:09,800 --> 03:29:11,720 IF WE'RE GOING TO TALK ABOUT 4269 03:29:11,720 --> 03:29:17,360 LARGE DATABASES AND STORAGE, 4270 03:29:17,360 --> 03:29:20,760 I'VE BEEN DOING AND WHAT YOU 4271 03:29:20,760 --> 03:29:23,040 NEVER WANT TO LOSE ARE THOSE 4272 03:29:23,040 --> 03:29:24,400 VALUABLE RESOURCES THAT HAVE 4273 03:29:24,400 --> 03:29:29,680 BEEN BUILT UP OVER THE YEARS AND 4274 03:29:29,680 --> 03:29:32,520 THE AND IF NIH WAS WILLING TO 4275 03:29:32,520 --> 03:29:37,800 SAY WE'RE GOING TO HOUSE THIS 4276 03:29:37,800 --> 03:29:48,360 INFORMATION AND WE'RE GOING TOE 4277 03:29:49,520 --> 03:29:50,840 LOOK AT LONG-TERM REQUIRED 4278 03:29:50,840 --> 03:29:51,320 EFFORTS. 4279 03:29:51,320 --> 03:29:53,520 THIS IS WHERE NIH CAN BE VERY 4280 03:29:53,520 --> 03:30:02,440 VALUABLE IN HELPING US OUT. 4281 03:30:02,440 --> 03:30:05,480 >>HOW DO YOU ENSURE WE DON'T 4282 03:30:05,480 --> 03:30:08,120 BOIL THE OCEAN AND HAVE 4283 03:30:08,120 --> 03:30:09,080 QUARTERLY, QUANTIFIABLE 4284 03:30:09,080 --> 03:30:09,880 MEASURES? 4285 03:30:09,880 --> 03:30:11,880 THIS GETS TO UNDERSTANDING HOW 4286 03:30:11,880 --> 03:30:13,760 IS IT WE CAN MEASURE THE 4287 03:30:13,760 --> 03:30:16,600 PROCESS, WHAT METRICS ARE 4288 03:30:16,600 --> 03:30:21,040 IMPORTANT AND I THINK WE TALKED 4289 03:30:21,040 --> 03:30:21,640 A LITTLE BIT ABOUT GETTING 4290 03:30:21,640 --> 03:30:23,360 INFORMATION LIKE THAT FROM THE 4291 03:30:23,360 --> 03:30:24,600 ONGOING SUCCESSFUL 4292 03:30:24,600 --> 03:30:24,960 COLLABORATIONS. 4293 03:30:24,960 --> 03:30:26,480 HOW DO THEY DO IT AND WHAT ARE 4294 03:30:26,480 --> 03:30:30,200 THE KEY THINGS TO MEASURE AND 4295 03:30:30,200 --> 03:30:31,440 THE KEY QUESTION TO ASK. 4296 03:30:31,440 --> 03:30:34,200 I DON'T FLOW IF THERE'S SOMEBODY 4297 03:30:34,200 --> 03:30:35,440 ELSE ON THE COMMITTEE WHO WANTS 4298 03:30:35,440 --> 03:30:40,040 TO ANSWER THAT MORE COMPLETELY. 4299 03:30:40,040 --> 03:30:50,280 >>I'LL TAKE A MENTION. 4300 03:30:50,280 --> 03:30:51,560 WE'VE LAID A TREMENDOUS 4301 03:30:51,560 --> 03:30:53,240 CHALLENGE AT THE FEET OF THE NIH 4302 03:30:53,240 --> 03:30:55,440 AND WE HAVE 15 INITIATIVES, LOTS 4303 03:30:55,440 --> 03:30:56,760 OF GREAT THOUGHTS IN TERMS OF 4304 03:30:56,760 --> 03:30:58,560 HOW YOU ADVANCE THE SCIENCE IN 4305 03:30:58,560 --> 03:30:59,160 THE SPACE. 4306 03:30:59,160 --> 03:31:01,360 I THINK THE CHALLENGE FOR THE 4307 03:31:01,360 --> 03:31:04,040 NIH IS TO BOIL THAT DOWN AND 4308 03:31:04,040 --> 03:31:08,440 DETERMINE WHAT ARE THE TWO TO 4309 03:31:08,440 --> 03:31:10,360 THREE MAYBE FOUR KEY ENABLERS 4310 03:31:10,360 --> 03:31:12,040 THAT WILL HAVE A HUGE IMPACT ON 4311 03:31:12,040 --> 03:31:12,600 THE SCIENCE. 4312 03:31:12,600 --> 03:31:18,560 AND THEN FOR EACH OF THOSE, YOU 4313 03:31:18,560 --> 03:31:21,280 GET THE CLEAR SCOPE DELIVERABLE 4314 03:31:21,280 --> 03:31:22,920 RESOURCE AND THE GOVERNANCE 4315 03:31:22,920 --> 03:31:25,520 PROCESS THAT DRIVES PACE AND 4316 03:31:25,520 --> 03:31:29,200 CADENCE AND EXECUTION. 4317 03:31:29,200 --> 03:31:30,840 THERE'S THE ONLY WAY TO ADVANCE 4318 03:31:30,840 --> 03:31:33,160 THINGS AND BACK TO THE QUESTION 4319 03:31:33,160 --> 03:31:34,400 NOT BOIL THE OCEAN BUT ADVANCE 4320 03:31:34,400 --> 03:31:35,480 THOSE CRITICAL THINGS THAT ARE 4321 03:31:35,480 --> 03:31:37,680 GOING TO MAKE THE BIGGEST 4322 03:31:37,680 --> 03:31:38,000 DIFFERENCE. 4323 03:31:38,000 --> 03:31:48,360 THAT WOULD BE MY VIEW. 4324 03:31:50,280 --> 03:31:51,400 THANK YOU TO THE AMAZING GROUP 4325 03:31:51,400 --> 03:31:56,600 AND THE ATTENDEES FOR SUCH GREAT 4326 03:31:56,600 --> 03:31:57,960 QUESTIONS WE'LL CONTINUE TO 4327 03:31:57,960 --> 03:32:00,200 COLLECT QUESTIONS ON THE MEDIA 4328 03:32:00,200 --> 03:32:02,640 WEBSITE AND WE LOOK FORWARD TO 4329 03:32:02,640 --> 03:32:06,640 CONTINUING TO SHAPE THE ALS 4330 03:32:06,640 --> 03:32:09,600 STRATEGIC PLAN AS YOUR EXCELLENT 4331 03:32:09,600 --> 03:32:12,120 QUESTION SHEDS LIGHT ON 4332 03:32:12,120 --> 03:32:12,720 IMPORTANT OPPORTUNITIES TO 4333 03:32:12,720 --> 03:32:15,640 ADVANCE ALS RESEARCH. 4334 03:32:15,640 --> 03:32:22,320 THANK YOU AGAIN. 4335 03:32:22,320 --> 03:32:24,720 >>I WANT TO THANK EVERYONE WHO 4336 03:32:24,720 --> 03:32:26,920 PARTICIPATED IN THIS DISCUSSION 4337 03:32:26,920 --> 03:32:27,920 AND DIALOGUE. 4338 03:32:27,920 --> 03:32:29,760 VERY INSTRUCTIVE AND WILL GUIDE 4339 03:32:29,760 --> 03:32:30,640 US GOING FORWARD. 4340 03:32:30,640 --> 03:32:32,320 WE'LL NOW TAKE A SHORT BREAK. 4341 03:32:32,320 --> 03:32:35,360 THE WORKSHOP WILL RESUME 2:15 4342 03:32:35,360 --> 03:32:38,160 AND WHEN WE COME BACK WE'LL 4343 03:32:38,160 --> 03:32:40,080 START THE PUBLIC EXCELLENT 4344 03:32:40,080 --> 03:32:40,320 SESSION. 4345 03:32:40,320 --> 03:32:42,280 YOU'RE WELCOME TO LEAVE THE 4346 03:32:42,280 --> 03:32:44,280 WORKSHOP RUNNING OR LOG OUT AND 4347 03:32:44,280 --> 03:32:45,080 BACK IN. 4348 03:32:45,080 --> 03:32:45,680 EITHER WAY WE'LL SEE YOU SOON. 4349 03:32:45,680 --> 03:33:00,880 THANK YOU. 4350 03:33:00,880 --> 03:33:03,560 >>WELCOME BACK AND WHAT 4351 03:33:03,560 --> 03:33:05,440 WE'D LIKE TO DO SIMILAR TO 4352 03:33:05,440 --> 03:33:10,640 YESTERDAY IS OPEN FOR COMMENTS. 4353 03:33:10,640 --> 03:33:13,080 YESTERDAY WE WERE READING A LOT 4354 03:33:13,080 --> 03:33:15,080 OF COMMENTS THAT WERE COMING IN 4355 03:33:15,080 --> 03:33:18,120 FROM THE AUDIENCE AND THEY WERE 4356 03:33:18,120 --> 03:33:20,360 EITHER POSTED EARLIER OR THEY 4357 03:33:20,360 --> 03:33:23,640 CAN ALSO BE POSTED IN THE Q&A IF 4358 03:33:23,640 --> 03:33:24,760 YOU HAVE ANY COMMENTS YOU STILL 4359 03:33:24,760 --> 03:33:29,160 WANT TO PROVIDE US WITH THAT YOU 4360 03:33:29,160 --> 03:33:30,360 WANT US TO SHARE WITH THE 4361 03:33:30,360 --> 03:33:31,840 COMMUNITY AND THE ATTENDEES OF 4362 03:33:31,840 --> 03:33:33,520 TODAY'S SESSION. 4363 03:33:33,520 --> 03:33:39,080 I WELCOME YOU TO PUT THE 4364 03:33:39,080 --> 03:33:44,040 COMMENTS OUT AND WE'LL READ THEM 4365 03:33:44,040 --> 03:33:46,520 OUT LOUD AND IF WE HAVE EXTRA 4366 03:33:46,520 --> 03:33:48,080 TIME WE'LL MAKE AN ATTEMPT TO 4367 03:33:48,080 --> 03:33:50,560 ANSWER THE UNANSWERED QUESTIONS 4368 03:33:50,560 --> 03:33:54,200 ACCUMULATED OVER THE LAST TWO 4369 03:33:54,200 --> 03:33:55,440 DAYS AND THERE WERE MANY 4370 03:33:55,440 --> 03:33:58,120 FANTASTIC QUESTION AND WE'LL SEE 4371 03:33:58,120 --> 03:33:58,960 IF WE HAVE TIME TO ADDRESS THOSE 4372 03:33:58,960 --> 03:34:03,160 QUESTIONS AND HAVE SOME OF THE 4373 03:34:03,160 --> 03:34:09,200 PANELISTS ANSWER THEM DIRECTLY. 4374 03:34:09,200 --> 03:34:12,040 IF WE CAN HAVE THE FIRST 4375 03:34:12,040 --> 03:34:12,320 COMMENTS. 4376 03:34:12,320 --> 03:34:13,240 I'LL HAVE YOU START WITH THE 4377 03:34:13,240 --> 03:34:19,760 FIRST COMMENT. 4378 03:34:19,760 --> 03:34:21,720 >>THIS IS FROM TIM LOWRY. 4379 03:34:21,720 --> 03:34:24,440 I HAVE BEEN LIVING WITH ALS 4380 03:34:24,440 --> 03:34:27,360 SINCE 2018 AND LEARNED MUCH FROM 4381 03:34:27,360 --> 03:34:29,280 MANY PARTICIPATING IN THE ALS 4382 03:34:29,280 --> 03:34:32,440 STRATEGIC PLAN, THANK YOU, FOR 4383 03:34:32,440 --> 03:34:34,320 YOUR RE LENTLESS WORK AND 4384 03:34:34,320 --> 03:34:39,520 THERE'S MUCH TO BE EXCITED 4385 03:34:39,520 --> 03:34:39,720 ABOUT. 4386 03:34:39,720 --> 03:34:45,640 THANK YOU. 4387 03:34:45,640 --> 03:34:48,400 >>THE NEXT COMMENT IS 4388 03:34:48,400 --> 03:34:50,600 ANONYMOUS, IF I MADE THE XHOIS 4389 03:34:50,600 --> 03:34:57,120 TO KNOW MY GENETIC STATUS IT'S 4390 03:34:57,120 --> 03:35:04,960 OFFICE TO BE ABLE TO ACT FOR MY 4391 03:35:04,960 --> 03:35:07,880 DESCENDANTS AND MYSELF BY 4392 03:35:07,880 --> 03:35:08,960 TESTING DRUGS BEFORE BEING SICK 4393 03:35:08,960 --> 03:35:11,400 AND IT'S DWE PLORABLE THAT 4394 03:35:11,400 --> 03:35:12,560 NOTHING IS ATTEMPTED FOR PEOPLE 4395 03:35:12,560 --> 03:35:18,240 WHO HAVE A HIGH PROB AT OF -- 4396 03:35:18,240 --> 03:35:20,000 PROBABILITY OF BEING SICK, SO 4397 03:35:20,000 --> 03:35:21,760 YES, TRIPLE YES, TO TRY 4398 03:35:21,760 --> 03:35:25,560 EVERYTHING FOR EVERYTHING. 4399 03:35:25,560 --> 03:35:26,200 THANK YOU. 4400 03:35:26,200 --> 03:35:30,640 >>THIS STATES, I ADVOCATE THE 4401 03:35:30,640 --> 03:35:35,720 FURTHER FUNDING OF 4402 03:35:35,720 --> 03:35:39,960 PRE-SYMPTOMATIC C9 ORF72 4403 03:35:39,960 --> 03:35:41,960 TREATMENT SUCH AS CRISPR AND 4404 03:35:41,960 --> 03:35:43,800 OTHER SOLUTION CAN MORE FUNDING 4405 03:35:43,800 --> 03:35:50,760 AND STRATEGY BE PLACED INTO THIS 4406 03:35:50,760 --> 03:35:52,920 LIFE-SAVING TREATMENT. 4407 03:35:53,240 --> 03:35:59,440 >>THE NEXT COMMENT IS FROM GLEN 4408 03:35:59,440 --> 03:36:00,280 ROUSE. 4409 03:36:00,280 --> 03:36:02,080 I WAS DIAGNOSED IN SEPTEMBER OF 4410 03:36:02,080 --> 03:36:06,400 2020 AND I WAS ABLE TO DRIVE 4411 03:36:06,400 --> 03:36:07,800 MYSELF TO THE CLINIC IN 4412 03:36:07,800 --> 03:36:09,400 SACRAMENTO WHICH WAS TWO AND A 4413 03:36:09,400 --> 03:36:10,800 HALF HOURS AWAY. 4414 03:36:10,800 --> 03:36:15,640 I WAS ALSO ON THE PLATFORM FILE 4415 03:36:15,640 --> 03:36:20,640 REGIMENT B FOR VERDIPERSTAT IT 4416 03:36:20,640 --> 03:36:22,880 DOES NOT MEET THE STATISTICAL 4417 03:36:22,880 --> 03:36:25,360 END POINT AND CONTACTED BY THE 4418 03:36:25,360 --> 03:36:27,120 RESEARCH COORDINATOR WHERE I DID 4419 03:36:27,120 --> 03:36:32,080 THE TRIAL AND NEEDED TO HAVE MY 4420 03:36:32,080 --> 03:36:33,720 LAST VISIT TO FINISH IT AND SAN 4421 03:36:33,720 --> 03:36:39,680 FRANCISCO WAS THREE HOURS AWAY. 4422 03:36:39,680 --> 03:36:41,920 >>WALTER, THERE'S A BIT MORE IN 4423 03:36:41,920 --> 03:36:42,640 THE COMMENT. 4424 03:36:42,640 --> 03:36:46,120 >>I'M SORRY. 4425 03:36:46,120 --> 03:36:49,560 >>HERE WE GO. 4426 03:36:49,560 --> 03:36:52,640 ONE THING I DID NOT HEAR 4427 03:36:52,640 --> 03:36:55,400 YESTERDAY IN LIGHT OF THE FOCUS 4428 03:36:55,400 --> 03:36:56,800 GROUP IN THE CLINICAL CARE, DUE 4429 03:36:56,800 --> 03:36:59,960 TO MY PROGRESSION, IF I HAVE TO 4430 03:36:59,960 --> 03:37:01,400 ATTEND THE CLINIC OR GO TO SAN 4431 03:37:01,400 --> 03:37:04,040 FRANCISCO I CAN NO LONGER DRIVE 4432 03:37:04,040 --> 03:37:05,280 MYSELF OR RIDE IN THE CAR. 4433 03:37:05,280 --> 03:37:06,560 IN ORDER TO GO TO THE 4434 03:37:06,560 --> 03:37:07,600 APPOINTMENTS I HAVE TO BE 4435 03:37:07,600 --> 03:37:09,720 TRANSPORTED BY A MEDICAL VAN. 4436 03:37:09,720 --> 03:37:12,920 THIS IS A TREMENDOUS EXPENSE FOR 4437 03:37:12,920 --> 03:37:15,880 MYSELF. 4438 03:37:15,880 --> 03:37:20,360 GOING THROUGH MY ALS COURSE COST 4439 03:37:20,360 --> 03:37:22,440 $1,900 PER HOUR FOR AS LONG AS 4440 03:37:22,440 --> 03:37:23,200 THE CLINIC TAKES. 4441 03:37:23,200 --> 03:37:24,560 I MENTION THIS BECAUSE THE 4442 03:37:24,560 --> 03:37:25,280 STRATEGIC PLAN SHOULD ADDRESS 4443 03:37:25,280 --> 03:37:28,800 HOW TO ACCOMMODATE PEOPLE WITH 4444 03:37:28,800 --> 03:37:30,800 ALS AS THE DISEASE PROGRESSES 4445 03:37:30,800 --> 03:37:33,040 THAT WOULD SEEM SOME SORT OF 4446 03:37:33,040 --> 03:37:34,360 VIRTUAL VISIT OR ZOOM CALL WOULD 4447 03:37:34,360 --> 03:37:37,000 BE ONE WAY TO HANDLE THIS 4448 03:37:37,000 --> 03:37:38,080 PROBLEM AND ALLOW ME TO 4449 03:37:38,080 --> 03:37:46,120 PARTICIPATE MORE EASILY. 4450 03:37:46,120 --> 03:37:47,800 >>WE'LL HAVE A COMMENT FROM 4451 03:37:47,800 --> 03:37:50,720 PEGGY JOHNSON. 4452 03:37:50,720 --> 03:37:53,560 >>MY FATHER DIED 30 YEARS AGO 4453 03:37:53,560 --> 03:37:55,040 AND MY MOM DIED OF ALS. 4454 03:37:55,040 --> 03:37:59,520 IN THAT TIME, THE ADVANCEMENT 4455 03:37:59,520 --> 03:38:00,800 AND AVAILABILITY OF MEDICATION 4456 03:38:00,800 --> 03:38:02,400 FOR THE OTHER POPULATION WITH 4457 03:38:02,400 --> 03:38:05,520 OTHER POPULATIONS HAS FAR 4458 03:38:05,520 --> 03:38:06,680 SURPASSED ANYTHING DONE WITH ALS 4459 03:38:06,680 --> 03:38:07,240 PATIENTS. 4460 03:38:07,240 --> 03:38:09,440 THERE'S MONEY AND IT NEEDS TO BE 4461 03:38:09,440 --> 03:38:13,240 USED TO GETTING ACCESS TO 4462 03:38:13,240 --> 03:38:14,520 WHATEVER EXPERIMENTAL TRACKS 4463 03:38:14,520 --> 03:38:16,640 HAVE A BASELINE OF DATA CHOSEN 4464 03:38:16,640 --> 03:38:17,840 FOR THE PATIENT FOR THEIR 4465 03:38:17,840 --> 03:38:22,120 TREATMENT PLAN. 4466 03:38:22,120 --> 03:38:23,520 THANK YOU. 4467 03:38:23,520 --> 03:38:27,280 >>NEXT IS A COMMENT, I AM 4468 03:38:27,280 --> 03:38:30,960 CONFUSED, DISGUSTED AND OUTRAGED 4469 03:38:30,960 --> 03:38:36,600 AS A TAXPAYER AND ALS GENE 4470 03:38:36,600 --> 03:38:41,480 CARRIER THAT ALS PATIENTS AND 4471 03:38:41,480 --> 03:38:42,600 GENE CARRIERS CAN'T AFFORD OR 4472 03:38:42,600 --> 03:38:46,680 HAVE ACCESS TO DRUGS THAT WOULD 4473 03:38:46,680 --> 03:38:48,080 GIVE THEM HOPE, IMPROVE AND 4474 03:38:48,080 --> 03:38:52,080 EXTEND THEIR LIVES. 4475 03:38:52,080 --> 03:38:54,920 THROUGH THE OUTRAGE THAT I CARRY 4476 03:38:54,920 --> 03:38:58,960 THE GENE FOR A DEVASTATING 4477 03:38:58,960 --> 03:39:03,520 DISEASE MAY HAVE NO HOPE FOR 4478 03:39:03,520 --> 03:39:05,320 PREVENTING IT TREATING IT, BEING 4479 03:39:05,320 --> 03:39:09,000 CARED FOR, CURING IT, SURVIVING 4480 03:39:09,000 --> 03:39:15,440 IT OR EVEN DYING WITH DIGNITY. 4481 03:39:15,440 --> 03:39:16,440 >>THANK YOU. 4482 03:39:16,440 --> 03:39:18,440 >>THE NEXT COMMENT COMES FROM 4483 03:39:18,440 --> 03:39:20,400 MAGGIE WHO SAYS MY MOTHER DIED 4484 03:39:20,400 --> 03:39:21,960 WAITING FOR HELP AND SHE 4485 03:39:21,960 --> 03:39:22,240 SUFFERED. 4486 03:39:22,240 --> 03:39:25,040 I SUFFERED AS HER PRIMARY 4487 03:39:25,040 --> 03:39:25,280 CAREGIVER. 4488 03:39:25,280 --> 03:39:27,920 IT WAS DEVASTATING AND HELLISH 4489 03:39:27,920 --> 03:39:30,000 AND NOW I'M CARRYING THE GENE. 4490 03:39:30,000 --> 03:39:31,440 GIVE ME HELP, PLEASE. 4491 03:39:31,440 --> 03:39:32,720 THANK YOU, MAGGIE. 4492 03:39:32,720 --> 03:39:33,760 WE HEAR YOU AND THAT'S EXACTLY 4493 03:39:33,760 --> 03:39:44,080 WHAT WE WANT TO DO. 4494 03:39:49,200 --> 03:39:51,280 IN 2012 WE LAUNCH THE ALS 4495 03:39:51,280 --> 03:39:52,400 EMERGENCY TREATMENT FUND WHICH 4496 03:39:52,400 --> 03:39:54,480 WAS THE FIRST ORGANIZATION IN 4497 03:39:54,480 --> 03:39:58,040 ANY THERAPEUTIC AREA NOT JUST 4498 03:39:58,040 --> 03:40:00,880 ALSO TO FOCUS ON LARGE SCALABLE 4499 03:40:00,880 --> 03:40:01,840 EXPANDED ACCESS PROGRAMS 4500 03:40:01,840 --> 03:40:03,720 FEASIBLE FOR DRUG DEVELOPERS AND 4501 03:40:03,720 --> 03:40:04,720 HEALTH CARE PROVIDER. 4502 03:40:04,720 --> 03:40:07,280 THE ORGANIZATION EXISTED FROM 4503 03:40:07,280 --> 03:40:09,120 2012 THROUGH 2018 DURING WHICH 4504 03:40:09,120 --> 03:40:13,240 TIME IT AUTHORED THE EXPANDED 4505 03:40:13,240 --> 03:40:16,720 ACCESS SESSION FOR THE FDA 4506 03:40:16,720 --> 03:40:18,080 GUIDANCE ON ALS DRUG DEVELOPMENT 4507 03:40:18,080 --> 03:40:20,240 AND LATER EXPANDED THE LANGUAGE 4508 03:40:20,240 --> 03:40:23,640 OF THE REAUTHORIZATION ACT OF 4509 03:40:23,640 --> 03:40:26,600 2016 SECTION 610 WHICH HAS 4510 03:40:26,600 --> 03:40:30,200 REPRESENTATIVE NESS AND 4511 03:40:30,200 --> 03:40:32,120 INCLUSIVITY AND THERE WAS A 4512 03:40:32,120 --> 03:40:34,640 PLATFORM FOR LARGE COHORT 4513 03:40:34,640 --> 03:40:37,040 EXPANDED ACCESS PROGRAMS SERVING 4514 03:40:37,040 --> 03:40:39,440 AS TREATMENT USE TRIALS FOR ALL 4515 03:40:39,440 --> 03:40:40,960 SEEKING NEW TREATMENT OPTIONS 4516 03:40:40,960 --> 03:40:42,560 AND FOR VALID REASONS ARE NOT 4517 03:40:42,560 --> 03:40:47,400 ABLE TO PARTICIPATE IN THE 4518 03:40:47,400 --> 03:40:50,600 RESEARCH TRIALS. 4519 03:40:50,600 --> 03:40:52,200 FIRST THE SPONSORS HAD COST 4520 03:40:52,200 --> 03:40:53,520 BURDEN FOR PATIENT AND THE 4521 03:40:53,520 --> 03:40:55,840 LIMITED TIME AND RESOURCES OF 4522 03:40:55,840 --> 03:40:57,800 PHYSICIANS INCLUDING THOSE AT 4523 03:40:57,800 --> 03:40:59,160 NON-RESEARCH CLINICS WHO WOULD 4524 03:40:59,160 --> 03:41:00,800 LIKE TO BRING INVESTIGATIONAL 4525 03:41:00,800 --> 03:41:01,600 TREATMENT AND DIAGNOSTIC OPTIONS 4526 03:41:01,600 --> 03:41:04,240 TO THEIR PATIENTS. 4527 03:41:04,240 --> 03:41:06,200 THE DRAFT AUTHORS SHOULD BE 4528 03:41:06,200 --> 03:41:07,520 COMMENDED FOR REFERENCING 4529 03:41:07,520 --> 03:41:09,720 EXPANDED ACCESS FIRST AS A 4530 03:41:09,720 --> 03:41:10,880 CAPABILITY OF THE CLINIC CORE 4531 03:41:10,880 --> 03:41:14,120 AND SECOND AS A FACET OF THE 4532 03:41:14,120 --> 03:41:17,240 PATIENT CENTRICITY BUT THE DRAFT 4533 03:41:17,240 --> 03:41:20,080 DOES NOT INCLUDE A PLAN FOR 4534 03:41:20,080 --> 03:41:21,240 MAKING IT FEASIBLE AT SCALE FOR 4535 03:41:21,240 --> 03:41:23,880 THE MEANINGFUL PROPORTION OF THE 4536 03:41:23,880 --> 03:41:26,480 DISEASE POPULATION. 4537 03:41:26,480 --> 03:41:29,520 NOR DOES IT CITE THE DISCOVERIES 4538 03:41:29,520 --> 03:41:31,400 MADE FROM EXPANDED PROGRAMS AND 4539 03:41:31,400 --> 03:41:32,040 OTHER THERAPEUTIC AREAS WHICH 4540 03:41:32,040 --> 03:41:33,360 WOULD NOT HAVE BEEN ACHIEVED 4541 03:41:33,360 --> 03:41:36,600 FROM RESEARCH TRIALS ALONE. 4542 03:41:36,600 --> 03:41:39,880 A PRIORITY SHOULD BE TO 4543 03:41:39,880 --> 03:41:41,640 INTEGRATE EDUCATIONAL 4544 03:41:41,640 --> 03:41:42,720 THERMOMETERS INTO A BROADER 4545 03:41:42,720 --> 03:41:44,520 RANGE OF CARE SETTINGS AND 4546 03:41:44,520 --> 03:41:49,280 CLINICS AND PROVIDERS THROUGH 4547 03:41:49,280 --> 03:41:51,880 EXPANDED ACCESS PROGRAMS THAT 4548 03:41:51,880 --> 03:41:54,200 ARE NEITHER COSTLY TO COMPANIES 4549 03:41:54,200 --> 03:41:56,800 AND UNDULY BURDENSOME. 4550 03:41:56,800 --> 03:41:58,240 NOW MAY BE A BETTER TIME THAN 4551 03:41:58,240 --> 03:42:00,280 WHEN WE FIRST PROPOSED IT DUE TO 4552 03:42:00,280 --> 03:42:04,360 THE WAVE OF THE SOLUTIONS IN E 4553 03:42:04,360 --> 03:42:07,280 PRO AND E-CONSENT 4554 03:42:07,280 --> 03:42:08,880 INTEROPERABILITY BETWEEN SYSTEMS 4555 03:42:08,880 --> 03:42:10,760 AND THE GROWING RECOGNITION OF 4556 03:42:10,760 --> 03:42:12,160 INVESTIGATIONAL TREATMENT AS A 4557 03:42:12,160 --> 03:42:13,960 LEGITIMATE CARE OPTION INSIDE 4558 03:42:13,960 --> 03:42:16,560 AND OUTSIDE THE TRADITIONAL 4559 03:42:16,560 --> 03:42:17,120 CLINICAL TRIAL ENTERPRISE. 4560 03:42:17,120 --> 03:42:23,560 THANK YOU. 4561 03:42:23,560 --> 03:42:24,960 >>WE HAVE ANOTHER COMMENT FROM 4562 03:42:24,960 --> 03:42:35,040 MIKE. 4563 03:42:36,760 --> 03:42:38,040 >>I HAVE TWO COMMENTS. 4564 03:42:38,040 --> 03:42:39,120 FIRST IS ON THE PRIORITIZATION 4565 03:42:39,120 --> 03:42:42,440 OF THE STRATEGIC PLAN. 4566 03:42:42,440 --> 03:42:43,920 I BELIEVE ACCELERATING THE 4567 03:42:43,920 --> 03:42:46,480 RESEARCH SHOULD BE OUR NUMBER 4568 03:42:46,480 --> 03:42:47,680 ONE PRIORITY WITH IDENTIFYING 4569 03:42:47,680 --> 03:42:48,320 OPPORTUNITIES FOR COLLABORATION 4570 03:42:48,320 --> 03:42:50,760 AND PARTNERSHIPS. 4571 03:42:50,760 --> 03:42:53,880 I BELIEVE IT WILL GIVE US 4572 03:42:53,880 --> 03:42:56,000 TARGETS FOR THERAPIES AND THE 4573 03:42:56,000 --> 03:42:58,640 RESEARCH AND OPTIMIZING THE ALS 4574 03:42:58,640 --> 03:42:59,480 CLVRJ RESEARCH IS THE NEXT 4575 03:42:59,480 --> 03:43:00,600 PRIORITY FOLLOWED BY THE QUALITY 4576 03:43:00,600 --> 03:43:03,000 OF LIFE. 4577 03:43:03,000 --> 03:43:04,560 I FEEL LIKE THE INDUSTRY WITH 4578 03:43:04,560 --> 03:43:07,640 THE $60,000 WE'RE PAYING FOR ALS 4579 03:43:07,640 --> 03:43:08,840 WHEELCHAIRS, THERE'S ENOUGH TO 4580 03:43:08,840 --> 03:43:09,440 MONEY PRIVATE COMPANIES CAN 4581 03:43:09,440 --> 03:43:16,160 HANDLE THAT. 4582 03:43:16,160 --> 03:43:22,120 MY SECOND COMMENT IS USEFUL 4583 03:43:22,120 --> 03:43:22,320 ASSETS. 4584 03:43:22,320 --> 03:43:24,200 WE LIKE TO LEVERAGE BIO 4585 03:43:24,200 --> 03:43:25,880 REPOSITORIES AND OTHER 4586 03:43:25,880 --> 03:43:26,200 REPOSITORIES. 4587 03:43:26,200 --> 03:43:27,040 TREMENDOUS AMOUNTS OF EFFORTS 4588 03:43:27,040 --> 03:43:28,400 AND DOLLARS HAVE BEEN INVESTED 4589 03:43:28,400 --> 03:43:30,080 IN CREATING THESE. 4590 03:43:30,080 --> 03:43:32,320 LEVERAGING THE EXISTING ASSETS 4591 03:43:32,320 --> 03:43:42,840 AND VALUE IS IMPORTANT TO THOSE 4592 03:43:44,280 --> 03:43:49,320 STAKEHOLDERS AND IMAGINE PUTTING 4593 03:43:49,320 --> 03:43:55,120 A CAR TOGETHER MANUFACTURED AT 4594 03:43:55,120 --> 03:43:58,960 SILOED PARTS AND THIS IS FROM A 4595 03:43:58,960 --> 03:44:01,120 SON WHERE JOHNNY CASH SUNG ABOUT 4596 03:44:01,120 --> 03:44:02,760 A CAR FROM PARTS ACQUIRED OVER 4597 03:44:02,760 --> 03:44:06,120 20 YEARS AND THIS IS THE SAME 4598 03:44:06,120 --> 03:44:08,160 IDEA AND AS MUCH AS WE'D LIKE TO 4599 03:44:08,160 --> 03:44:11,400 THERE'S SOME FACETS THAT AREN'T 4600 03:44:11,400 --> 03:44:12,320 WIDELY USABLE. 4601 03:44:12,320 --> 03:44:13,040 ORGANIZATIONS THAT HAVE THE 4602 03:44:13,040 --> 03:44:15,400 ASSETS SEEM TO REQUIRE THEM TO 4603 03:44:15,400 --> 03:44:19,520 BE USED AS A CONDITION FOR 4604 03:44:19,520 --> 03:44:19,920 COLLABORATION. 4605 03:44:19,920 --> 03:44:21,200 IN MY EXPERIENCE REQUIRING THE 4606 03:44:21,200 --> 03:44:22,720 ASSETS IS A BARRIER TO 4607 03:44:22,720 --> 03:44:23,080 COLLABORATION. 4608 03:44:23,080 --> 03:44:30,200 WE ATTEMPTED TO USE THOSE ASSETS 4609 03:44:30,200 --> 03:44:37,080 AND WE MAY BUILD THE SAME 4610 03:44:37,080 --> 03:44:38,960 CADILLAC WITH DIFFERENT PARTS 4611 03:44:38,960 --> 03:44:41,400 AND EACH MY HAVE A DIFFERENT 4612 03:44:41,400 --> 03:44:46,640 ASSET FROM THE RESEARCH DESIGN 4613 03:44:46,640 --> 03:44:49,240 AND WE NEED TO COLLECT IT 4614 03:44:49,240 --> 03:44:50,080 PERSPECTIVIVELY. 4615 03:44:50,080 --> 03:44:52,080 THE SAMPLE OF THE REPOSITORY 4616 03:44:52,080 --> 03:44:53,880 MISSING FUNCTIONAL RATES OF 4617 03:44:53,880 --> 03:44:54,200 DECLINE. 4618 03:44:54,200 --> 03:44:57,680 THIS IS CHALLENGING GOING 4619 03:44:57,680 --> 03:44:59,040 FORWARD BUT CHANGING WITH SAMPLE 4620 03:44:59,040 --> 03:45:00,240 COLLECTION PROGRAMS. 4621 03:45:00,240 --> 03:45:04,640 I'LL ENCOURAGE THE ALS FUNDING 4622 03:45:04,640 --> 03:45:07,280 ORGANIZATIONS TO LOOK OVERCOME 4623 03:45:07,280 --> 03:45:10,080 THE COLLABORATION BARRIER. 4624 03:45:10,080 --> 03:45:17,200 THANK YOU. 4625 03:45:17,200 --> 03:45:23,200 >>TO THE PRE-SUBMITTED 4626 03:45:23,200 --> 03:45:24,360 COMMENTS. 4627 03:45:24,360 --> 03:45:27,280 ONE PERSON SAYS MY FATHER WAS 4628 03:45:27,280 --> 03:45:30,120 DIAGNOSED WITH ALS AND FOUND TO 4629 03:45:30,120 --> 03:45:35,520 HAVE THE C9 GENE MUTATION. 4630 03:45:35,520 --> 03:45:37,240 WHILE HE'S THE FIRST IN MY 4631 03:45:37,240 --> 03:45:40,960 FAMILY TO BE DIAGNOSED WITH ALS 4632 03:45:40,960 --> 03:45:42,920 WE KNOW THE GENE IS INHERITABLE 4633 03:45:42,920 --> 03:45:48,640 AND I TESTED POSITIVE FOR THE 4634 03:45:48,640 --> 03:45:50,920 SAME MUTATION AND IT'S A 4635 03:45:50,920 --> 03:45:53,040 POSSIBILITY TO PASS IT DOWN TO 4636 03:45:53,040 --> 03:45:55,240 MY FUTURE CHILDREN. 4637 03:45:55,240 --> 03:46:01,160 I'M GRATEFUL FOR THE NINDS FOR 4638 03:46:01,160 --> 03:46:04,160 FORMING THIS WORKING GROUP AND 4639 03:46:04,160 --> 03:46:05,920 DEVELOPING THE STRATEGIC PLAN. 4640 03:46:05,920 --> 03:46:09,720 HOWEVER, MORE NEEDS TO BE DONE. 4641 03:46:09,720 --> 03:46:11,760 THERE NEEDS TO BE MORE RESEARCH 4642 03:46:11,760 --> 03:46:16,000 IN THE PRE-SYMPTOMATIC GENE 4643 03:46:16,000 --> 03:46:18,360 CARRIERS LIKE MYSELF TO HAVE 4644 03:46:18,360 --> 03:46:23,440 ACCESS TO TREATMENTS THAT WOULD 4645 03:46:23,440 --> 03:46:26,840 PREVENT THE SYMPTOMS TO MANI 4646 03:46:26,840 --> 03:46:27,120 MANIFEST. 4647 03:46:27,120 --> 03:46:31,600 WHEN MY FATHER RESOURCED HIS 4648 03:46:31,600 --> 03:46:34,120 GENETIC TESTING RESULTS I WAS 4649 03:46:34,120 --> 03:46:36,200 BASICALLY ON MY OWN TO DETERMINE 4650 03:46:36,200 --> 03:46:36,920 WHAT TO DO ABOUT MY OWN TESTING 4651 03:46:36,920 --> 03:46:41,000 AND TREATMENT. 4652 03:46:41,000 --> 03:46:42,000 THERE NEEDS TO BE MORE SUPPORT 4653 03:46:42,000 --> 03:46:44,400 FOR THOSE WHO ARE AT RISK OF 4654 03:46:44,400 --> 03:46:51,320 DEVELOPING ALS. 4655 03:46:51,320 --> 03:46:53,960 RECENT GENE CARRIERS NEED TO BE 4656 03:46:53,960 --> 03:46:56,360 INCLUDED IN THE STUDIES TESTING 4657 03:46:56,360 --> 03:46:58,680 POTENTIAL TREATMENT AS IT'S THE 4658 03:46:58,680 --> 03:47:01,240 ONLY WAY TO KNOW IF ALS CAN BE 4659 03:47:01,240 --> 03:47:06,240 PREVENTED OR EVEN CURED. 4660 03:47:06,240 --> 03:47:07,840 RIGHT NOW, THERE'S NO BEST 4661 03:47:07,840 --> 03:47:11,560 EVIDENCE FOR WHAT I CAN DO TO 4662 03:47:11,560 --> 03:47:14,320 PREVENT THIS DISEASE FROM M 4663 03:47:14,320 --> 03:47:17,720 MANIFESTING AND LIKELY TOO LATE 4664 03:47:17,720 --> 03:47:21,000 FOR MY FATHER TO BE ENROLLED IN 4665 03:47:21,000 --> 03:47:21,520 ABE STUDIES TESTING NEW 4666 03:47:21,520 --> 03:47:23,680 THERAPIES. 4667 03:47:23,680 --> 03:47:26,680 MORE NEEDS TO BE DONE FOR US. 4668 03:47:26,680 --> 03:47:32,600 WE NEED ACCESS TO POTENTIAL 4669 03:47:32,600 --> 03:47:33,960 THERAPIES AT THE SAME RATE OF 4670 03:47:33,960 --> 03:47:37,240 THOSE LIVING WITH ALS. 4671 03:47:37,240 --> 03:47:44,240 THANK YOU. 4672 03:47:44,240 --> 03:47:49,840 >>THIS IS FROM PETE SENSE 4673 03:47:49,840 --> 03:47:50,080 SPENCER. 4674 03:47:50,080 --> 03:47:52,160 I LOST A FRIEND AND THANK YOU 4675 03:47:52,160 --> 03:47:53,760 FOR THE OPPORTUNITY TO DEVELOP 4676 03:47:53,760 --> 03:47:54,960 TO THE NEW STRATEGIC PLAN. 4677 03:47:54,960 --> 03:47:57,560 THERE'S SO MUCH GOOD I SEE IN 4678 03:47:57,560 --> 03:47:59,040 THE DRAFT I WANT TO EMPHASIZE 4679 03:47:59,040 --> 03:48:02,200 THE IMPORTANCE OF ONE THEME 4680 03:48:02,200 --> 03:48:05,200 RUNNING THROUGHOUT THE PLAN ALL 4681 03:48:05,200 --> 03:48:07,280 FIVE WORKING GROUPS AT SOME 4682 03:48:07,280 --> 03:48:10,000 POINT IDENTIFIED THE NEED TO 4683 03:48:10,000 --> 03:48:11,080 GATHER MORE DATA FROM A 4684 03:48:11,080 --> 03:48:12,880 POPULATION OF PEOPLE LIVING WITH 4685 03:48:12,880 --> 03:48:13,040 ALS. 4686 03:48:13,040 --> 03:48:16,040 I STRONGLY SUPPORT THE MORE OF 4687 03:48:16,040 --> 03:48:18,200 REACHING MORE UNDER REPRESENTED 4688 03:48:18,200 --> 03:48:19,680 PEOPLE AND DOCTORS FOR INCLUSION 4689 03:48:19,680 --> 03:48:21,040 IN RESEARCH. 4690 03:48:21,040 --> 03:48:22,880 MANY STATED THE SCIENTIFIC VALUE 4691 03:48:22,880 --> 03:48:24,000 BUT ALSO SIMPLY THE RIGHT THING 4692 03:48:24,000 --> 03:48:25,680 TO DO. 4693 03:48:25,680 --> 03:48:29,240 NO ONE SHOULD BE PRECLUDED FROM 4694 03:48:29,240 --> 03:48:32,320 PARTICIPATING IN RESEARCH VIA A 4695 03:48:32,320 --> 03:48:34,360 NATURAL HISTORY STUDY OR 4696 03:48:34,360 --> 03:48:35,400 CLINICAL TRIAL BECAUSE THEY DO 4697 03:48:35,400 --> 03:48:37,600 NOT HAVE THE MEANS TO GET TO AN 4698 03:48:37,600 --> 03:48:40,040 ALS CENTER OF EXCELLENCE OR ALS 4699 03:48:40,040 --> 03:48:40,920 CLINIC. 4700 03:48:40,920 --> 03:48:42,120 I OFTEN WONDER ABOUT THE PEOPLE 4701 03:48:42,120 --> 03:48:44,480 WITH ALS I DO NOT SEE. 4702 03:48:44,480 --> 03:48:46,960 ALMOST ALL THE TERRIFIC PEOPLE I 4703 03:48:46,960 --> 03:48:48,920 HAVE MET IN THE ALS ADVOCACY 4704 03:48:48,920 --> 03:48:50,680 COMMUNITY ARE PROFESSIONALS WITH 4705 03:48:50,680 --> 03:48:53,600 AT LEAST ONE POST SECONDARY 4706 03:48:53,600 --> 03:48:54,760 DEGREE AND WHILE IT TOOK SOME 4707 03:48:54,760 --> 03:48:56,480 TIME THEY'RE NOW CONNECTED TO 4708 03:48:56,480 --> 03:48:58,760 OTHERS AND AWARE OF ALS 4709 03:48:58,760 --> 03:49:00,600 RESEARCH, TREATMENTS AND 4710 03:49:00,600 --> 03:49:00,960 CLINICAL TRIALS. 4711 03:49:00,960 --> 03:49:03,800 HOWEVER, MORE THAN HALF OF ALL 4712 03:49:03,800 --> 03:49:05,520 AMERICANS HAVE NOT COMPLETED A 4713 03:49:05,520 --> 03:49:07,840 COLLEGE DEGREE AND I SEE FEW OF 4714 03:49:07,840 --> 03:49:11,360 THEM REPRESENTED IN ALS ADVOCACY 4715 03:49:11,360 --> 03:49:12,280 GROUPS OR ON SOCIAL MEDIA. 4716 03:49:12,280 --> 03:49:19,040 THEY MAY BE LESS ABLE TO 4717 03:49:19,040 --> 03:49:22,080 SELF-ADVOCATE AND LESS AWARE OF 4718 03:49:22,080 --> 03:49:23,200 TREATMENT OPTIONS. 4719 03:49:23,200 --> 03:49:24,280 THERE ARE IT'S CRITICAL TO 4720 03:49:24,280 --> 03:49:29,320 EXPAND AWARENESS, TRAINING AND 4721 03:49:29,320 --> 03:49:31,000 PARTICIPATION IN ALS RESEARCH TO 4722 03:49:31,000 --> 03:49:32,720 PRIMARY CARE PHYSICIANS AND 4723 03:49:32,720 --> 03:49:33,960 NEUROLOGISTS IN ALL AREAS OF THE 4724 03:49:33,960 --> 03:49:36,920 COUNTRY SO ALL PEOPLE WITH ALS 4725 03:49:36,920 --> 03:49:43,160 WILL BE ENCOURAGED AND ABLE TO 4726 03:49:43,160 --> 03:49:43,440 PARTICIPATE. 4727 03:49:43,440 --> 03:49:45,960 THE ALS ADVOCACY COMMUNITY IS 4728 03:49:45,960 --> 03:49:49,240 WILLING AND READY TO HELP WITH 4729 03:49:49,240 --> 03:49:50,640 THIS. 4730 03:49:50,640 --> 03:49:51,240 THANK YOU, PETE. 4731 03:49:51,240 --> 03:49:51,600 >> 4732 03:49:51,600 --> 03:49:54,080 >>THE KEY TO EVERYTHING FOR A 4733 03:49:54,080 --> 03:49:57,640 PERSON LIVING WITH ALS IS AN ALS 4734 03:49:57,640 --> 03:49:58,000 DIAGNOSIS. 4735 03:49:58,000 --> 03:49:59,680 WITHOUT IT THERE ARE NO DISEASE 4736 03:49:59,680 --> 03:50:02,640 MODIFYING MEDICATIONS, 4737 03:50:02,640 --> 03:50:04,400 EQUIPMENT, SUPPORT, CARE 4738 03:50:04,400 --> 03:50:05,600 COORDINATION, ACCESS TO CLINICAL 4739 03:50:05,600 --> 03:50:11,680 TRIALS OR GENETIC TESTING. 4740 03:50:11,680 --> 03:50:12,400 CERTAIN GROUPS OF PEOPLE 4741 03:50:12,400 --> 03:50:14,440 EXPERIENCE DELAYS SUCH AS BLACK 4742 03:50:14,440 --> 03:50:16,200 PATIENTS EXPERIENCE AN 4743 03:50:16,200 --> 03:50:19,240 ADDITIONAL 6 TO 8 MONTH DELAY ON 4744 03:50:19,240 --> 03:50:21,080 TOP OF THE AVERAGE 12 MONTH 4745 03:50:21,080 --> 03:50:22,640 DELAY FOR SYMPTOM ONSET FOR ALS 4746 03:50:22,640 --> 03:50:22,880 PATIENTS. 4747 03:50:22,880 --> 03:50:25,280 IN MANY CASES THIS IS NOT ONLY 4748 03:50:25,280 --> 03:50:28,280 INCREDIBLY DIFFICULT AND 4749 03:50:28,280 --> 03:50:31,280 ISOLATING FOR THE PATIENT BUT 4750 03:50:31,280 --> 03:50:33,440 MAY ALSO BE LIFE-THREATENING AND 4751 03:50:33,440 --> 03:50:35,000 THE IDEAL WINDOW TO SLOW THE 4752 03:50:35,000 --> 03:50:36,920 PROGRESSION AND GAIN ACCESS TO 4753 03:50:36,920 --> 03:50:38,120 CLINICAL TRIALS MAY BE MISSED. 4754 03:50:38,120 --> 03:50:40,280 IT'S IMPORTANT THAT THE 4755 03:50:40,280 --> 03:50:43,280 STRUCTURE AND SYSTEMIC BARRIERS 4756 03:50:43,280 --> 03:50:45,000 THAT DISADVANTAGED CERTAIN 4757 03:50:45,000 --> 03:50:47,560 POPULATIONS FROM RECEIVING A 4758 03:50:47,560 --> 03:50:50,440 DIAGNOSIS ARE ADDRESSED IN THE 4759 03:50:50,440 --> 03:50:52,560 IMPLEMENTATION OF THE ALS PLAN 4760 03:50:52,560 --> 03:50:53,680 TO BE IMPACTFUL AND MEANINGFUL. 4761 03:50:53,680 --> 03:50:58,160 THANK YOU. 4762 03:50:58,160 --> 03:51:00,200 >>THERE'S A FEW MORE COMMENTS 4763 03:51:00,200 --> 03:51:00,880 THAT I'M PULLING OUT FROM THE 4764 03:51:00,880 --> 03:51:06,600 CHAT. 4765 03:51:06,600 --> 03:51:10,000 IT WAS CLEAR FROM THE TWO DAYS 4766 03:51:10,000 --> 03:51:11,680 THE PATH FORWARD IS FOR ALL 4767 03:51:11,680 --> 03:51:14,360 RESEARCHERS TO HAVE ACCESS TO 4768 03:51:14,360 --> 03:51:16,800 BROAD AND INCLUSIVE DATA SET 4769 03:51:16,800 --> 03:51:19,120 THAT INCLUDES A LARGE POPULATION 4770 03:51:19,120 --> 03:51:21,760 OF ALS PATIENTS, CLINICAL, 4771 03:51:21,760 --> 03:51:23,760 GENETIC AND BIO FLUID AND TISSUE 4772 03:51:23,760 --> 03:51:25,000 SAMPLES WITH WHICH TO CONDUCT 4773 03:51:25,000 --> 03:51:25,680 THEIR RESEARCH. 4774 03:51:25,680 --> 03:51:27,720 THIS WILL CLEARLY INCENTIVIZE 4775 03:51:27,720 --> 03:51:30,640 RESEARCH AND FOCUS THE RESEARCH 4776 03:51:30,640 --> 03:51:33,120 ON THE KEY KNOWLEDGE GAPS THAT 4777 03:51:33,120 --> 03:51:35,000 ONCE FILLED WILL LEAD TO 4778 03:51:35,000 --> 03:51:39,920 EFFECTIVE THERAPIES AND MORE 4779 03:51:39,920 --> 03:51:40,720 STREAMLINE AND EFFICIENT 4780 03:51:40,720 --> 03:51:41,240 CLINICAL TRIAL PROCESS. 4781 03:51:41,240 --> 03:51:43,680 IT'S BEEN DONE FOR CANCER AND 4782 03:51:43,680 --> 03:51:47,680 HIV NOW IT'S TIME TO FOCUS THE 4783 03:51:47,680 --> 03:51:49,640 BUDGET AND RESOURCES TO FOCUS ON 4784 03:51:49,640 --> 03:51:49,800 ALS. 4785 03:51:49,800 --> 03:51:51,760 FOR YEARS, ALS PATIENTS AND 4786 03:51:51,760 --> 03:51:55,640 THEIR FAMILIES HAVE BEEN THE 4787 03:51:55,640 --> 03:51:58,320 BETTER OF THE CASINO. 4788 03:51:58,320 --> 03:51:59,520 IT'S TIME FOR OUR COMMUNITY TO 4789 03:51:59,520 --> 03:52:09,840 BECOME THE HOUSE. 4790 03:52:13,960 --> 03:52:17,400 >>AFTER READING THE DRAFT I SEE 4791 03:52:17,400 --> 03:52:21,440 THE BUILDING BLACK RESONATES 4792 03:52:21,440 --> 03:52:21,760 THROUGHOUT. 4793 03:52:21,760 --> 03:52:25,560 I HOPE AS THE PLAN IS FINALIZED 4794 03:52:25,560 --> 03:52:27,280 A ROBUST NIH JUMPS TO THE TOP OF 4795 03:52:27,280 --> 03:52:27,760 THE LIST. 4796 03:52:27,760 --> 03:52:30,520 THIS IS NEEDED TO CONTRIBUTE TO 4797 03:52:30,520 --> 03:52:31,080 BUILD A BETTER ALS RESEARCH 4798 03:52:31,080 --> 03:52:41,280 COMMUNITY. 4799 03:52:43,040 --> 03:52:46,120 >>THERE WAS ONE MORE COMMENT 4800 03:52:46,120 --> 03:52:49,320 AND ASYSTEMATIC GENE CARRIERS 4801 03:52:49,320 --> 03:52:50,960 DON'T NEED TO PONDER. 4802 03:52:50,960 --> 03:52:56,440 WE WON'T BE IGNORED ANYMORE. 4803 03:52:56,440 --> 03:52:57,560 THANK YOU AND FOR EVERYBODY ELSE 4804 03:52:57,560 --> 03:53:00,000 WHO LEFT COMMENTS THAT WE WERE 4805 03:53:00,000 --> 03:53:01,840 HAPPY TO SHARE WITH EVERYBODY. 4806 03:53:01,840 --> 03:53:06,640 WE HAVE A LITTLE BIT MER TIME 4807 03:53:06,640 --> 03:53:09,840 AND WE WERE HOPING TO GET TO 4808 03:53:09,840 --> 03:53:13,200 QUESTIONS THAT WERE LEFT 4809 03:53:13,200 --> 03:53:18,800 UNANSWERED AND ONE WAS TO OUR 4810 03:53:18,800 --> 03:53:20,520 TRANSLATIONAL RESEARCH WORKING 4811 03:53:20,520 --> 03:53:26,240 GROUP I THINK NEIL SCHNEIDER 4812 03:53:26,240 --> 03:53:27,280 WANTED TO ADDRESS ONE QUESTION. 4813 03:53:27,280 --> 03:53:35,000 DO YOU HAVE THE QUESTION READY? 4814 03:53:35,000 --> 03:53:37,200 >>I'M PLEASED TO HAVE THE 4815 03:53:37,200 --> 03:53:38,280 OPPORTUNITY. 4816 03:53:38,280 --> 03:53:41,360 A NUMBER OF QUESTIONS CAME UP 4817 03:53:41,360 --> 03:53:43,440 YESTERDAY RELATED TO OUR FIRST 4818 03:53:43,440 --> 03:53:46,880 PRIORITY TO ESTABLISH CENTERS OF 4819 03:53:46,880 --> 03:53:47,640 EXCELLENCE PROGRAM IN ALS. 4820 03:53:47,640 --> 03:53:51,280 THERE WERE A NUMBER OF QUESTIONS 4821 03:53:51,280 --> 03:53:53,360 WITH RELATED CONCERNS. 4822 03:53:53,360 --> 03:53:55,680 ONE QUESTION READ CENTERS OF 4823 03:53:55,680 --> 03:53:57,920 EXCELLENCE ARE HELPFUL IN 4824 03:53:57,920 --> 03:53:58,640 PROVIDING INFRASTRUCTURE AND 4825 03:53:58,640 --> 03:54:00,560 INTERACTION AND SHARED RESOURCES 4826 03:54:00,560 --> 03:54:02,360 AND SUPPORT FOR NEW 4827 03:54:02,360 --> 03:54:02,960 INVESTIGATORS, ETCETERA. 4828 03:54:02,960 --> 03:54:05,120 MEASURES ARE NEEDED TO ASSURE 4829 03:54:05,120 --> 03:54:07,320 CONTINUED QUALITY AND 4830 03:54:07,320 --> 03:54:07,680 COMPETITIVENESS. 4831 03:54:07,680 --> 03:54:09,800 WHAT KIND OF MEASURES WOULD 4832 03:54:09,800 --> 03:54:12,240 ENSURE THESE CENTERS CONTINUE TO 4833 03:54:12,240 --> 03:54:14,600 CONDUCT HIGH-QUALITY, CUTTING 4834 03:54:14,600 --> 03:54:15,640 EDGE RESEARCH AND SERVE THE 4835 03:54:15,640 --> 03:54:22,080 BROADER RESEARCH COMMUNITY. 4836 03:54:22,080 --> 03:54:24,080 >>I LIKE THIS QUESTION AND MOST 4837 03:54:24,080 --> 03:54:29,640 THE RELATED QUESTIONS BECAUSE IT 4838 03:54:29,640 --> 03:54:32,640 FIRST ACKNOWLEDGES THE 4839 03:54:32,640 --> 03:54:36,160 IMPORTANCE OF THE ADVANTAGES OF 4840 03:54:36,160 --> 03:54:40,600 A CENTER IN EXCELLENCE PROGRAM 4841 03:54:40,600 --> 03:54:42,000 AND SHARED RESOURCES AND SUPPORT 4842 03:54:42,000 --> 03:54:45,400 FOR INVESTIGATORS. 4843 03:54:45,400 --> 03:54:48,040 THERE'S CONCERN EXPRESSED THAT 4844 03:54:48,040 --> 03:54:50,760 THESE CENTERS OF EXCELLENCE MAY 4845 03:54:50,760 --> 03:54:52,280 CONCENTRATE LIMITED RESOURCES TO 4846 03:54:52,280 --> 03:54:55,560 THE HANDS OF A SMALL NUMBER OF 4847 03:54:55,560 --> 03:54:58,240 LARGE ACADEMIC CENTERS LIKE THE 4848 03:54:58,240 --> 03:55:04,360 ONE THAT I LEAD AT THE EXPENSE 4849 03:55:04,360 --> 03:55:10,040 OF PATIENTS WHO DO NOT HAVE 4850 03:55:10,040 --> 03:55:14,040 ACCESS TO THESE LARGE ACADEMIC 4851 03:55:14,040 --> 03:55:23,320 CENTERS AS EXACERBATING WHO GETS 4852 03:55:23,320 --> 03:55:25,240 CARED FOR AND WHO DOES NOT. 4853 03:55:25,240 --> 03:55:27,760 THAT WAS NOT OUR INTENTION. 4854 03:55:27,760 --> 03:55:29,320 ON THE CONTRARY, WHAT WE THINK 4855 03:55:29,320 --> 03:55:30,840 IS NECESSARY AS WE'VE TALKED 4856 03:55:30,840 --> 03:55:32,000 ABOUT FOR TWO DAYS WE'VE TALKED 4857 03:55:32,000 --> 03:55:36,080 ABOUT BUILDING AN INFRASTRUCTURE 4858 03:55:36,080 --> 03:55:38,120 TO SUPPORT BASIC SCIENCE AND 4859 03:55:38,120 --> 03:55:40,440 TRANSLATIONAL SCIENCE AND 4860 03:55:40,440 --> 03:55:41,960 CLINICAL RESEARCH IN ALS AND A 4861 03:55:41,960 --> 03:55:47,280 LOT OF WHAT IS BEING SUGGESTED 4862 03:55:47,280 --> 03:55:50,840 TO THE NINDS IS IS A LOT OF WORK 4863 03:55:50,840 --> 03:55:52,160 AND EFFORT AND WHO WILL DO THE 4864 03:55:52,160 --> 03:55:54,040 WORK AND EFFORT AND WHAT IS 4865 03:55:54,040 --> 03:55:55,560 NEEDED TO DO IT. 4866 03:55:55,560 --> 03:55:57,160 WHATEVER THE NINDS DECIDES TO DO 4867 03:55:57,160 --> 03:55:58,000 WITH OUR RECOMMENDATIONS. 4868 03:55:58,000 --> 03:56:00,840 I THINK WHAT WE'RE TRYING DO FOR 4869 03:56:00,840 --> 03:56:02,120 CENTERS OF EXCELLENCE PROGRAM IS 4870 03:56:02,120 --> 03:56:06,440 TO BEGIN TO BUILD THE 4871 03:56:06,440 --> 03:56:07,040 INFRASTRUCTURE AND PROVIDE 4872 03:56:07,040 --> 03:56:09,720 SUPPORT FOR THE PROGRAMS THAT 4873 03:56:09,720 --> 03:56:15,080 ARE NEEDED TO MOVE US FORWARD. 4874 03:56:15,080 --> 03:56:16,400 WE'RE NOT TRYING TO GIVE 4875 03:56:16,400 --> 03:56:17,160 ADDITIONAL RESOURCE TO PEOPLE 4876 03:56:17,160 --> 03:56:21,040 WHO HAVE ENOUGH. 4877 03:56:21,040 --> 03:56:22,040 WE'RE TRYING TO ESTABLISH A 4878 03:56:22,040 --> 03:56:27,560 LARGER NETWORK OF CENTERS THAT 4879 03:56:27,560 --> 03:56:29,360 WOULD INVOLVE MORE PATIENTS SO 4880 03:56:29,360 --> 03:56:31,120 THE NODES SERVE AS AN ORGANIZING 4881 03:56:31,120 --> 03:56:35,680 CENTER FOR OTHER CENTERS IN 4882 03:56:35,680 --> 03:56:37,400 REGIONS OF THE COUNTRY THAT CAN 4883 03:56:37,400 --> 03:56:40,000 FEED PATIENTS TO THESE CENTERS 4884 03:56:40,000 --> 03:56:43,160 TO REACH OUT TO THEM REMOTELY 4885 03:56:43,160 --> 03:56:44,640 THROUGH DIGITAL TECHNOLOGIES AND 4886 03:56:44,640 --> 03:56:49,440 REMOTE CONSENTING, WORKING IN 4887 03:56:49,440 --> 03:56:51,720 THE FIELD TO INVOLVE AS MANY AS 4888 03:56:51,720 --> 03:56:52,360 PATIENTS AS POSSIBLE IN THE 4889 03:56:52,360 --> 03:57:00,520 IMPORTANT WORK WE HAVE TO DO. 4890 03:57:00,520 --> 03:57:02,280 AND WHAT IS ASKED IS IMPORTANT 4891 03:57:02,280 --> 03:57:04,240 AND QUALITY MEASURES ARE NEEDED 4892 03:57:04,240 --> 03:57:05,480 TO ASSURE CONTINUED QUALITY 4893 03:57:05,480 --> 03:57:08,640 COMPETITIVENESS AND WHAT KIND OF 4894 03:57:08,640 --> 03:57:10,560 MEASURES WOULD ENSURE THE 4895 03:57:10,560 --> 03:57:11,120 CENTERS CONTINUE TO BE HIGH 4896 03:57:11,120 --> 03:57:17,240 QUALITY. 4897 03:57:17,240 --> 03:57:19,680 THERE'S EXAMPLES OF THESE 4898 03:57:19,680 --> 03:57:23,720 CENTERS OF EXCELLENCE AND THE 4899 03:57:23,720 --> 03:57:26,920 CENTERS IN MUSCULAR DYSTROPHY 4900 03:57:26,920 --> 03:57:28,400 AND THE UDALL CENTERS AND 4901 03:57:28,400 --> 03:57:31,640 THERE'S EXAMPLES THAT WORK WEM 4902 03:57:31,640 --> 03:57:34,040 IN DIFFERENT WAYS. 4903 03:57:34,040 --> 03:57:34,600 WE DIDN'T WANT TO BE TOO 4904 03:57:34,600 --> 03:57:40,480 PRESCRIPTIVE TO WHAT THE PROGRAM 4905 03:57:40,480 --> 03:57:42,720 WOULD LOOK LIKE BECAUSE THERE'S 4906 03:57:42,720 --> 03:57:44,720 DIFFERENT MODELS FOR WHAT MIGHT 4907 03:57:44,720 --> 03:57:47,120 WORK AND THERE'S DECISIONS TO BE 4908 03:57:47,120 --> 03:57:52,960 MADE AS THERE ARE THE PRIORITIES 4909 03:57:52,960 --> 03:57:54,960 AND HOW IT WILL BE IMPLEMENTED. 4910 03:57:54,960 --> 03:58:04,800 WE HAD IDEAS WE SUBMITTED. 4911 03:58:04,800 --> 03:58:10,440 CORES OF THE CENTERS AND METRICS 4912 03:58:10,440 --> 03:58:13,080 THAT NEED TO BE MET AND PEOPLE 4913 03:58:13,080 --> 03:58:15,080 NEED TO SHOW THEY MET THE 4914 03:58:15,080 --> 03:58:17,080 MILESTONES THEY SET OUT IN 4915 03:58:17,080 --> 03:58:21,120 ADVANCE AND HAVE SUCCEEDED AND 4916 03:58:21,120 --> 03:58:22,560 WHAT THEY LAID OUT AND THIS 4917 03:58:22,560 --> 03:58:24,240 CENTERS HAVE TO UNDER GO 4918 03:58:24,240 --> 03:58:29,280 COMPETITIVE RENEWAL ON A TYPICAL 4919 03:58:29,280 --> 03:58:29,920 5-YEAR TERM. 4920 03:58:29,920 --> 03:58:31,760 I THINK THE CENTERS HAVE AN 4921 03:58:31,760 --> 03:58:33,800 IMPORTANT ROLE TO PLAY IN 4922 03:58:33,800 --> 03:58:37,000 ESTABLISHING THE STRUCTURE 4923 03:58:37,000 --> 03:58:39,240 NEEDED TO DO THE WORK WE'VE BEEN 4924 03:58:39,240 --> 03:58:41,040 TALKING ABOUT FOR TWO DAYS AND 4925 03:58:41,040 --> 03:58:45,200 WHAT THE CENTERS LOOK LIKE AND 4926 03:58:45,200 --> 03:58:46,200 HOW MANY THERE ARE AND WHERE 4927 03:58:46,200 --> 03:58:47,680 THEY'RE PLACED IS A DECISION FOR 4928 03:58:47,680 --> 03:58:57,720 THE NINDS. 4929 03:58:57,720 --> 03:59:00,120 >>I APPRECIATE YOUR 4930 03:59:00,120 --> 03:59:00,800 RE-ADDRESSING THE QUESTION THAT 4931 03:59:00,800 --> 03:59:01,600 CAME UP. 4932 03:59:01,600 --> 03:59:03,400 I THINK THIS IS IT FOR THIS 4933 03:59:03,400 --> 03:59:03,800 SESSION. 4934 03:59:03,800 --> 03:59:06,280 WE DON'T HAVE ANY ADDITIONAL 4935 03:59:06,280 --> 03:59:08,400 COMMENTS OR QUESTIONS THAT WE 4936 03:59:08,400 --> 03:59:09,400 HAVE TO ADDRESS. 4937 03:59:09,400 --> 03:59:11,800 SO CERTAINLY FOR THOSE OF YOU 4938 03:59:11,800 --> 03:59:14,600 WHO HAD OTHER QUESTIONS THAT 4939 03:59:14,600 --> 03:59:15,840 CAME UP YESTERDAY AND TODAY, 4940 03:59:15,840 --> 03:59:19,080 HOPEFULLY ALL THE QUESTIONS WERE 4941 03:59:19,080 --> 03:59:20,800 ADDRESSED EITHER DURING THE 4942 03:59:20,800 --> 03:59:23,320 SESSION SLIDE OR BY THE NIH 4943 03:59:23,320 --> 03:59:25,040 STAFF THAT FEVERISHLY TRIED TO 4944 03:59:25,040 --> 03:59:27,120 LOOK AT THE QUESTIONS AND 4945 03:59:27,120 --> 03:59:28,320 PROVIDED ANSWERS TO THESE 4946 03:59:28,320 --> 03:59:29,480 QUESTIONS OFFLINE. 4947 03:59:29,480 --> 03:59:34,080 THANK YOU FOR ALL THE NIH STAFF 4948 03:59:34,080 --> 03:59:35,280 THAT WORKED IN THE BACKGROUND. 4949 03:59:35,280 --> 03:59:38,040 SO WHAT BOB AND I WOULD LIKE TO 4950 03:59:38,040 --> 03:59:40,400 DO IS TO NOW SUMMARIZE WHAT WE 4951 03:59:40,400 --> 03:59:45,600 THINK WE LEARNED FROM THE TWO 4952 03:59:45,600 --> 03:59:49,440 DAYS AND BOB, GENERATED A COUPLE 4953 03:59:49,440 --> 03:59:51,200 POWER POINT SLIDES WE WANT TO 4954 03:59:51,200 --> 03:59:53,680 BRING UP TO WRAP UP THE WORKSHOP 4955 03:59:53,680 --> 03:59:55,680 WHICH HAS TRULY BEEN TERRIFIC. 4956 03:59:55,680 --> 03:59:57,360 BOB, I'M GOING TO LET YOU GET 4957 03:59:57,360 --> 03:59:58,080 STARTED WITH THE SLIDES. 4958 03:59:58,080 --> 03:59:59,440 >>THANK YOU VERY MUCH. 4959 03:59:59,440 --> 04:00:04,600 I THINK I'LL NEED CAPACITY TO 4960 04:00:04,600 --> 04:00:05,280 SHARE SCREEN. 4961 04:00:05,280 --> 04:00:07,240 I WANT TO BEGIN BY THANKING THE 4962 04:00:07,240 --> 04:00:11,280 INCREDIBLE EFFORTS OF THE STAFF. 4963 04:00:11,280 --> 04:00:12,800 EVERYONE HAS BEEN PHENOMENAL IN 4964 04:00:12,800 --> 04:00:18,760 MAKING THIS GO FORWARD SO WELL. 4965 04:00:18,760 --> 04:00:22,360 RITA AND I REVIEWED HOW BEST TO 4966 04:00:22,360 --> 04:00:24,640 SUM UP AND RATHER THAN REPEATING 4967 04:00:24,640 --> 04:00:26,200 EVEN AT HIGH ALTITUDE WHAT'S 4968 04:00:26,200 --> 04:00:27,400 BEEN SAID ALREADY IN TERMS OF 4969 04:00:27,400 --> 04:00:29,280 THE DISCREET WORKING GROUPS AND 4970 04:00:29,280 --> 04:00:34,880 THEIR PRIORITIES, INSTEAD WE'D 4971 04:00:34,880 --> 04:00:36,360 SUMMARIZE THE COMMON THREADS OR 4972 04:00:36,360 --> 04:00:38,240 THEMES THAT HAVE BEEN INTERWOVEN 4973 04:00:38,240 --> 04:00:45,080 BETWEEN BOTH DAYS. 4974 04:00:45,080 --> 04:00:47,200 IT MAY BE USEFUL IN THINKING OF 4975 04:00:47,200 --> 04:00:49,360 THE TIGHTNESS OF THE DOCUMENT 4976 04:00:49,360 --> 04:00:51,000 AND THE BROAD CONSENSUS AS THE 4977 04:00:51,000 --> 04:00:51,800 BEEN FOR SOME OF THE CONCEPTS 4978 04:00:51,800 --> 04:00:57,000 AND IDEAS. 4979 04:00:57,000 --> 04:00:58,840 THE FIRST CATEGORY IS THE BASIC 4980 04:00:58,840 --> 04:01:02,440 AND CLINICAL RESEARCH IDEAS. 4981 04:01:02,440 --> 04:01:05,880 I THINK FOREMOST AMONG THESE AND 4982 04:01:05,880 --> 04:01:08,880 WE HEARD THIS FROM ALL THE 4983 04:01:08,880 --> 04:01:10,120 INVESTIGATORS AND CLINICIANS AND 4984 04:01:10,120 --> 04:01:13,200 THE NIH STAFF IS THE INCREDIBLE 4985 04:01:13,200 --> 04:01:14,880 URGENCY THERE IS TO TAKE THE 4986 04:01:14,880 --> 04:01:17,480 EXPANDING UNIVERSE OF NEW TOOLS 4987 04:01:17,480 --> 04:01:19,280 AND RESOURCES AND BRING THEM TO 4988 04:01:19,280 --> 04:01:24,320 BEAR POWERFULLY AND EFFECTIVELY 4989 04:01:24,320 --> 04:01:29,280 TO UNDERSTAND AND TREAT ALS THAT 4990 04:01:29,280 --> 04:01:30,480 UNDER LIES EVERYTHING WE 4991 04:01:30,480 --> 04:01:30,760 DISCUSSED. 4992 04:01:30,760 --> 04:01:32,480 THERE'S NO DOUBT A SECOND AND 4993 04:01:32,480 --> 04:01:34,840 CLEAR DOMINANT THEME WAS THE 4994 04:01:34,840 --> 04:01:36,680 CHALLENGE TO UNDERSTAND SPORADIC 4995 04:01:36,680 --> 04:01:36,880 ALS. 4996 04:01:36,880 --> 04:01:41,440 AS WE SAID, IN ALL THE MEETINGS 4997 04:01:41,440 --> 04:01:43,600 WHEN WE MEET BY ZOOM OR FACE TO 4998 04:01:43,600 --> 04:01:46,560 FACE, THE UNANSWERED QUESTION 4999 04:01:46,560 --> 04:01:48,480 THAT ALWAYS LOOMS IS WHAT IS 5000 04:01:48,480 --> 04:01:49,440 SPORADIC ALS. 5001 04:01:49,440 --> 04:01:52,880 WHILE IT'S TRUE GENETICS AND THE 5002 04:01:52,880 --> 04:01:54,960 LESSONS FROM UNDERSTANDING 5003 04:01:54,960 --> 04:01:57,120 FAMILIAL ALS HAVE PROVIDED SOME 5004 04:01:57,120 --> 04:01:58,800 INSIGHT INTO SPORADIC ALS WE CAN 5005 04:01:58,800 --> 04:02:00,280 DO BETTER AND MUST. 5006 04:02:00,280 --> 04:02:02,520 AND AMONG OTHER THINGS, AS 5007 04:02:02,520 --> 04:02:04,040 WALTER SAID AT THE START, 5008 04:02:04,040 --> 04:02:06,160 THERE'S AN IMPORTANT CHALLENGE 5009 04:02:06,160 --> 04:02:08,200 OF UNDERSTANDING INTERPLAY 5010 04:02:08,200 --> 04:02:10,080 BETWEEN GENETIC VARIANTS AND 5011 04:02:10,080 --> 04:02:12,360 ENVIRONMENT AND WHAT HE TERMED 5012 04:02:12,360 --> 04:02:15,400 THE DARK MATTER OF ENVIRONMENTAL 5013 04:02:15,400 --> 04:02:15,800 TOXINS. 5014 04:02:15,800 --> 04:02:17,280 I THINK THAT'S A THING THAT 5015 04:02:17,280 --> 04:02:17,760 SEEMS TO BE VERY CLEAR 5016 04:02:17,760 --> 04:02:21,000 THROUGHOUT ALL OF THIS. 5017 04:02:21,000 --> 04:02:25,760 A THIRD THEME THAT WE FREQUENTLY 5018 04:02:25,760 --> 04:02:29,600 HEARD AND POWERFULLY SO WAS 5019 04:02:29,600 --> 04:02:31,680 UNDERSTANDING HETEROGENEITY AND 5020 04:02:31,680 --> 04:02:35,600 SUB CATEGORIES OF EACH AND 5021 04:02:35,600 --> 04:02:37,840 IMPORTANTLY HOW THEY'RE RELATING 5022 04:02:37,840 --> 04:02:41,440 BETWEEN THE CLINICAL AND 5023 04:02:41,440 --> 04:02:44,280 MOLECULAR SUBSETS AND THE 5024 04:02:44,280 --> 04:02:52,840 INTERLOCKING TERMS. 5025 04:02:52,840 --> 04:02:55,880 ANOTHER IS THE IMPORTANCE OF 5026 04:02:55,880 --> 04:02:58,080 EARLY INTERVENTION AND 5027 04:02:58,080 --> 04:02:59,440 PRESYMPTOMATIC TREATMENT AND 5028 04:02:59,440 --> 04:03:05,160 THOSE WHO ARE CARRIERS EXAMPLE 5029 04:03:05,160 --> 04:03:07,280 CAN BE IDENTIFIED FOR EMERGING 5030 04:03:07,280 --> 04:03:07,560 THERAPIES. 5031 04:03:07,560 --> 04:03:13,160 WE HEARD ABOUT THE IMPORTANCE OF 5032 04:03:13,160 --> 04:03:14,200 COLLABORAT 5033 04:03:14,200 --> 04:03:15,640 COLLABORATIVE AND SHARED 5034 04:03:15,640 --> 04:03:17,080 INFRASTRUCTURE AND SHOULD BE 5035 04:03:17,080 --> 04:03:21,120 PROVISIONS FOR OPEN ACCESS. 5036 04:03:21,120 --> 04:03:23,080 THIS WAS LITERALLY A POINT MADE 5037 04:03:23,080 --> 04:03:24,400 IN EVERY WORK GROUP AND 5038 04:03:24,400 --> 04:03:27,440 DISCUSSED WELL THIS AFTERNOON 5039 04:03:27,440 --> 04:03:30,080 WITH THE DOCTOROFF GROUP WHO 5040 04:03:30,080 --> 04:03:32,120 STATED THE IMPORTANT POINT THAT 5041 04:03:32,120 --> 04:03:35,080 SYNERGIES THAT ARE DERIVED IN 5042 04:03:35,080 --> 04:03:36,560 THIS WAY WILL BASIC LEVERAGE AND 5043 04:03:36,560 --> 04:03:38,400 USE THE SHARED RESOURCES SOME 5044 04:03:38,400 --> 04:03:41,920 WHICH ALREADY EXIST AND SHOULD 5045 04:03:41,920 --> 04:03:43,880 INCLUDE MULTI-DIMENSIONAL DATA 5046 04:03:43,880 --> 04:03:51,360 SETS AND LONGITUDINALLY 5047 04:03:51,360 --> 04:03:53,120 CONNECTED SAMPLES AND IMAGING 5048 04:03:53,120 --> 04:03:57,680 AND HARMONIZED TO ALLOW THE 5049 04:03:57,680 --> 04:04:01,280 APPROPRIATE COMPARISON CONTRAST, 5050 04:04:01,280 --> 04:04:03,000 INTEGRATION AND DATA MINING TO 5051 04:04:03,000 --> 04:04:04,920 BE EMPLOYED. 5052 04:04:04,920 --> 04:04:07,080 AS WE THINK ABOUT INTERROGATING 5053 04:04:07,080 --> 04:04:09,160 THE DATA SETS WE ALSO LOOK AT 5054 04:04:09,160 --> 04:04:12,720 THE EMERGING TECHNOLOGIES IN 5055 04:04:12,720 --> 04:04:14,640 ARTIFICIAL INTELLIGENCE WHICH 5056 04:04:14,640 --> 04:04:19,160 MAY ENORMOUSLY ENHANCE OUR 5057 04:04:19,160 --> 04:04:21,040 ABILITY TO DISCERN MEANINGFUL 5058 04:04:21,040 --> 04:04:22,480 FINDINGS FROM THE SETS. 5059 04:04:22,480 --> 04:04:24,680 ALSO, MENTIONED WAS THE 5060 04:04:24,680 --> 04:04:26,880 IMPORTANCE OF DEVELOPING 5061 04:04:26,880 --> 04:04:29,440 REPOSITORIES FOR RESEARCH TOOLS, 5062 04:04:29,440 --> 04:04:31,520 PROTOCOLS AND RESOURCES AND 5063 04:04:31,520 --> 04:04:32,600 DEVICES WHICH WILL HELP ALL OF 5064 04:04:32,600 --> 04:04:34,920 US AND IMPORTANTLY THE DECREASED 5065 04:04:34,920 --> 04:04:41,760 BARRIERS FOR ENTRY INTO ALS 5066 04:04:41,760 --> 04:04:43,720 RESEARCH A POINT THAT LED TO OUR 5067 04:04:43,720 --> 04:04:46,760 LAST SHARED VIEWS AND IN 5068 04:04:46,760 --> 04:04:47,440 DIFFERENT PRESENTATIONS 5069 04:04:47,440 --> 04:04:48,080 EMPHASIZE EDUCATION IS IMPORTANT 5070 04:04:48,080 --> 04:04:54,120 AND WE HAVE TO THINK OF TRAINING 5071 04:04:54,120 --> 04:04:55,440 CLINICIANS, SCIENTISTS AND 5072 04:04:55,440 --> 04:04:57,920 GENETIC COUNSELORS AND OTHER WHO 5073 04:04:57,920 --> 04:04:58,840 JOIN THE ALS COMMUNITY TO 5074 04:04:58,840 --> 04:05:08,200 ENHANCE THE RESEARCH EFFORTS. 5075 04:05:08,200 --> 04:05:08,400 RITA. 5076 04:05:08,400 --> 04:05:09,680 >>THANK YOU, BOP. 5077 04:05:09,680 --> 04:05:14,920 THE SECOND BROAD TOPIC WE TRIED 5078 04:05:14,920 --> 04:05:15,960 TO SUMMARIZE THE HIGHLIGHT OF 5079 04:05:15,960 --> 04:05:19,280 THESE TWO DAYS AND THE 5080 04:05:19,280 --> 04:05:20,600 DISCUSSIONS WE HAVE WAS ON 5081 04:05:20,600 --> 04:05:23,360 PATIENT CARE AND ADVOCACY. 5082 04:05:23,360 --> 04:05:28,440 THAT'S BECOME OBVIOUS DURING OUR 5083 04:05:28,440 --> 04:05:33,360 SERVICE POSSESSION WHERE WE A 5084 04:05:33,360 --> 04:05:34,360 DECISION TO IMPROVE ON THE 5085 04:05:34,360 --> 04:05:37,320 QUALITY OF LIFE FOR PATIENTS AND 5086 04:05:37,320 --> 04:05:47,720 PEOPLE LIVING WITH ALS. 5087 04:05:52,240 --> 04:05:53,760 AND THE CHALLENGE IS WITH THE 5088 04:05:53,760 --> 04:05:56,360 QUALITY OF LIFE ISSUES IS TO 5089 04:05:56,360 --> 04:05:58,000 DEFINE AND DEVELOP THE FIRST 5090 04:05:58,000 --> 04:05:59,240 FUNDING METRICS AND THAT NEEDS 5091 04:05:59,240 --> 04:06:01,080 TO BE ADDRESSED. 5092 04:06:01,080 --> 04:06:03,000 AND WE MUST NOT LOSE SITE AND 5093 04:06:03,000 --> 04:06:05,960 THAT WAS AN IMPORTANT TOPIC OF 5094 04:06:05,960 --> 04:06:09,720 NOT JUST CAN WE PICK UP A CUP OF 5095 04:06:09,720 --> 04:06:16,480 COFFEE BUT ALSO THE WELLNESS AND 5096 04:06:16,480 --> 04:06:17,840 JOY OF PEOPLE LIVING WITH THIS 5097 04:06:17,840 --> 04:06:20,760 DISEASE DESPITE THE DISABILITIES 5098 04:06:20,760 --> 04:06:22,080 AND DYSFUNCTION THEY SHOW AND 5099 04:06:22,080 --> 04:06:28,240 PROGRESS DURING THE DISEASE. 5100 04:06:28,240 --> 04:06:29,880 IT WOULD BE IMPORTANT TO IMPROVE 5101 04:06:29,880 --> 04:06:32,720 ON THE RATING SYSTEM AND SCALES 5102 04:06:32,720 --> 04:06:35,080 UTILIZED IN THE CLINIC TO DATE 5103 04:06:35,080 --> 04:06:36,440 AND SHOULD THAT INCLUDE QUALITY 5104 04:06:36,440 --> 04:06:39,280 OF LIFE AND HOW WILL THAT BE 5105 04:06:39,280 --> 04:06:41,760 DEFINED AND HOW SHOULD WE 5106 04:06:41,760 --> 04:06:42,560 INTEGRATE THIS? 5107 04:06:42,560 --> 04:06:47,120 THE SECOND TOPIC IS A LITTLE BIT 5108 04:06:47,120 --> 04:06:47,960 OVERLAPPING. 5109 04:06:47,960 --> 04:06:50,120 AND WE SAW NOT ONLY DO WE HAVE 5110 04:06:50,120 --> 04:06:53,200 TO EDUCATE RESEARCHERS AND 5111 04:06:53,200 --> 04:06:57,280 CLINICIANS WE HAVE TO PROVIDE 5112 04:06:57,280 --> 04:06:59,280 ACCESS TO THE EDUCATION FOR PALS 5113 04:06:59,280 --> 04:07:00,320 AND CALS. 5114 04:07:00,320 --> 04:07:03,960 THERE SHOULDN'T BE LIMITATIONS 5115 04:07:03,960 --> 04:07:07,280 FOR ANYBODY BEING DIAGNOSED ALS 5116 04:07:07,280 --> 04:07:09,840 AND THEY GET ALL THE INFORMATION 5117 04:07:09,840 --> 04:07:11,000 THEY NEED TO UNDERSTAND THE 5118 04:07:11,000 --> 04:07:14,920 DISEASE AND WHAT'S COMING THEIR 5119 04:07:14,920 --> 04:07:16,120 WAY AND LEARN ABOUT RESOURCES 5120 04:07:16,120 --> 04:07:22,080 AVAILABLE TO THEM AND HOW TO GET 5121 04:07:22,080 --> 04:07:24,320 ACCESS AN EXAMPLE IS SOFTWARE TO 5122 04:07:24,320 --> 04:07:25,840 HELP THEM COMMUNICATE WHEN THEY 5123 04:07:25,840 --> 04:07:29,680 START LOSING THEIR ABILITY TO 5124 04:07:29,680 --> 04:07:31,800 SPEAK AND COMMUNICATE. 5125 04:07:31,800 --> 04:07:34,440 THERE NEEDS TO BE BETTER ACCESS 5126 04:07:34,440 --> 04:07:35,920 PLANS AND FOR OPPORTUNITIES FOR 5127 04:07:35,920 --> 04:07:36,920 PEOPLE LIVING WITH ALS AND 5128 04:07:36,920 --> 04:07:38,720 CAREGIVERS TO NOT HAVE TO GO 5129 04:07:38,720 --> 04:07:40,280 THROUGH HOOPS AND TAKE WEEKS AND 5130 04:07:40,280 --> 04:07:42,080 MONTHS TO FIGURE OUT HOW DO WE 5131 04:07:42,080 --> 04:07:45,080 ACCESS THE RESOURCES. 5132 04:07:45,080 --> 04:07:51,400 THAT SHOULD BE AN EASY ONE-SHOP 5133 04:07:51,400 --> 04:07:53,480 THAT PROVIDES ALL THE RESOURCES 5134 04:07:53,480 --> 04:07:57,840 AND ALLOW PEOPLE LIVING WITH ALS 5135 04:07:57,840 --> 04:07:59,360 AND FAMILY MEMBERS TO GET WHAT 5136 04:07:59,360 --> 04:08:01,880 RESOURCE THERE TO IMPROVE THEIR 5137 04:08:01,880 --> 04:08:03,920 RED QUALITY OF LIFE AND HAVE 5138 04:08:03,920 --> 04:08:04,680 ACCESS TO THEM AND GET THEM IN 5139 04:08:04,680 --> 04:08:09,680 THEIR HOMES. 5140 04:08:09,680 --> 04:08:15,920 AND WHAT CAME UP NOT JUST TODAY 5141 04:08:15,920 --> 04:08:18,080 BUT YESTERDAY FOR THE CLINICAL 5142 04:08:18,080 --> 04:08:19,720 TRIAL DESIGN AND INCLUSIVITY AND 5143 04:08:19,720 --> 04:08:22,400 IT'S AN IMPORTANT TOPIC WE 5144 04:08:22,400 --> 04:08:24,440 CANNOT IGNORE ANY LONGER AND WE 5145 04:08:24,440 --> 04:08:26,160 TALKED ABOUT THIS IN THE 5146 04:08:26,160 --> 04:08:28,200 DISCUSSION TODAY BUT IT'S 5147 04:08:28,200 --> 04:08:30,840 IMPORTANT TO INCLUDE A DIVERSITY 5148 04:08:30,840 --> 04:08:33,560 IN REGARD TO THE GENETICS AND 5149 04:08:33,560 --> 04:08:36,000 THE CLINICAL HETEROGENEITY OF 5150 04:08:36,000 --> 04:08:39,840 THE DISEASE AND WILL TEACH US 5151 04:08:39,840 --> 04:08:42,280 HOW HETEROGENOUS THE DISEASE IS 5152 04:08:42,280 --> 04:08:44,640 AS WE GO THE ROUTE OF BEING MORE 5153 04:08:44,640 --> 04:08:44,880 INCLUSIVE. 5154 04:08:44,880 --> 04:08:46,440 WE HAVE TO REACH OUT TO RURAL 5155 04:08:46,440 --> 04:08:46,720 LOCATIONS. 5156 04:08:46,720 --> 04:08:52,800 WE CANNOT JUST FOCUS OUR 5157 04:08:52,800 --> 04:08:55,240 RESEARCH ON THE PEOPLE WITH THE 5158 04:08:55,240 --> 04:08:57,120 DISEASE THAT LIVE CLOSE TO THE 5159 04:08:57,120 --> 04:09:00,880 CENTERS OF EXCELLENCE AND GLAD 5160 04:09:00,880 --> 04:09:07,280 WE HAD THE DISCUSSION KNE NEIL 5161 04:09:07,280 --> 04:09:08,520 MENTIONED AND DOESN'T MEAN WE'LL 5162 04:09:08,520 --> 04:09:10,760 EXCLUDE THOSE WHO DON'T HAVE THE 5163 04:09:10,760 --> 04:09:12,400 CENTERS OF EXCELLENCE. 5164 04:09:12,400 --> 04:09:15,560 IT'S IMPORTANT WE MAKE SURE THAT 5165 04:09:15,560 --> 04:09:17,440 WE'RE NOT EXCLUDEING ANYBODY NOT 5166 04:09:17,440 --> 04:09:20,360 LIVING IN BIG CITIES WHERE THE 5167 04:09:20,360 --> 04:09:24,960 CENTERS ARE OFTEN LOCALIZED AND 5168 04:09:24,960 --> 04:09:27,360 RACE AND GENDER WHICH CAN 5169 04:09:27,360 --> 04:09:30,320 INFLUENCE THE TIMELINESS OF 5170 04:09:30,320 --> 04:09:31,760 DIAGNOSIS AND THERAPIES AND HAVE 5171 04:09:31,760 --> 04:09:33,800 TO PAY ATTENTION TO THE ASPECTS 5172 04:09:33,800 --> 04:09:35,440 AND INCLUDE THIS IN THE STUDIES 5173 04:09:35,440 --> 04:09:36,560 WE'RE DOING AND INCLUDE THIS IN 5174 04:09:36,560 --> 04:09:39,920 THE STUDY DESCRIBE OF OUR 5175 04:09:39,920 --> 04:09:40,680 CLINICAL TRIALS AND IN OUR 5176 04:09:40,680 --> 04:09:42,760 RESEARCH STUDIES AND 5177 04:09:42,760 --> 04:09:43,440 PRE-CLINICAL AND TRANSLATIONAL 5178 04:09:43,440 --> 04:09:48,040 STUDIES WE'RE DOING. 5179 04:09:48,040 --> 04:09:49,640 THIS IS A HIGH PRIORITY CLEARLY 5180 04:09:49,640 --> 04:09:50,680 IDENTIFIED THROUGH THE 5181 04:09:50,680 --> 04:09:51,280 DISCUSSIONS WE HAD TODAY AND 5182 04:09:51,280 --> 04:10:01,120 YESTERDAY. 5183 04:10:01,120 --> 04:10:02,560 DO YOU WANT TO SAY ANYTHING 5184 04:10:02,560 --> 04:10:06,120 ABOUT THE THOUGHTS YOU HAD? 5185 04:10:06,120 --> 04:10:11,480 >>I WANT TO EMPHASIZE THAT IT'S 5186 04:10:11,480 --> 04:10:12,840 BEEN A WONDERFUL EXERCISE 5187 04:10:12,840 --> 04:10:14,440 PULLING THIS WHOLE DOCUMENT 5188 04:10:14,440 --> 04:10:17,760 TOGETHER WORKING WITH RITA AND 5189 04:10:17,760 --> 04:10:19,320 THE NIH STAFF TO PREPARE THE 5190 04:10:19,320 --> 04:10:21,040 DRAFT BUT IT'S STILL A DRAFT. 5191 04:10:21,040 --> 04:10:24,480 IT'S NOT TOO LATE TO LOOK AT IT 5192 04:10:24,480 --> 04:10:27,160 AGAIN AND ENCOURAGE THE 5193 04:10:27,160 --> 04:10:28,960 CO-CHAIRS AND ANY PARTICIPANT TO 5194 04:10:28,960 --> 04:10:31,320 LOOK AT WAYS IT COULD BE TWEAKED 5195 04:10:31,320 --> 04:10:32,920 AND TUNED AND IMPROVED. 5196 04:10:32,920 --> 04:10:35,320 IT WAS STRIKING, FOR EXAMPLE, 5197 04:10:35,320 --> 04:10:37,720 THAT IN A WONDERFUL SECTION ON 5198 04:10:37,720 --> 04:10:39,320 ACCELERATING BIOLOGY THERE WAS 5199 04:10:39,320 --> 04:10:40,760 MENTION FOR EXAMPLE OF GENETIC 5200 04:10:40,760 --> 04:10:47,880 RISK FACTORS BUT NOT A LOT ABOUT 5201 04:10:47,880 --> 04:10:51,040 COMBINATORIAL GENETIC AND WE 5202 04:10:51,040 --> 04:10:53,000 COULD TALK MORE IN THE DRAFT 5203 04:10:53,000 --> 04:10:55,040 ABOUT WHAT WE MEAN BY CHALLENGES 5204 04:10:55,040 --> 04:10:57,040 AND HAD A SUMMARY FROM WALTER 5205 04:10:57,040 --> 04:11:04,200 ABOUT THE NEW OFFICE OF 5206 04:11:04,200 --> 04:11:12,720 NEUROEXPOSE AND TOXICOLOGY AND 5207 04:11:12,720 --> 04:11:13,760 THE THERAPEUTIC PIPELINE. 5208 04:11:13,760 --> 04:11:15,720 MY POINT IS WE WANT IT HEAR FROM 5209 04:11:15,720 --> 04:11:16,240 YOU. 5210 04:11:16,240 --> 04:11:19,960 WE WANT TO KNOW IF THERE ARE 5211 04:11:19,960 --> 04:11:21,320 WAYS I THINK WITHOUT MAJOR 5212 04:11:21,320 --> 04:11:24,160 STRUCTURAL REDESIGN WE CAN 5213 04:11:24,160 --> 04:11:25,200 SHARPEN THE DOCUMENT BECAUSE 5214 04:11:25,200 --> 04:11:31,640 RIGHT NOW IT REFLECT THE 5215 04:11:31,640 --> 04:11:34,880 REFLECTION FROM BEING HIGH 5216 04:11:34,880 --> 04:11:38,080 ALTITUDE AND BE USEFUL IN 5217 04:11:38,080 --> 04:11:39,400 GUIDING THE NINDS IN TERMS OF 5218 04:11:39,400 --> 04:11:42,840 THE STRATEGIC PRIORITIES. 5219 04:11:42,840 --> 04:11:49,280 AGAIN, AT THIS POINT I WANT TO 5220 04:11:49,280 --> 04:11:51,040 THANK EVERYONE AND WHAT A 5221 04:11:51,040 --> 04:11:52,080 PRIVILEGE IT'S BEEN INVOLVED AS 5222 04:11:52,080 --> 04:11:54,640 A CO-CHAIR AND AS THE WORK YET 5223 04:11:54,640 --> 04:11:56,360 TO BE DONE BUT WE'RE ON THE WAY. 5224 04:11:56,360 --> 04:12:02,520 AT THIS POINT WE TURN TO WALTER 5225 04:12:02,520 --> 04:12:06,080 FOR ADDITIONAL COMMENTS. 5226 04:12:09,600 --> 04:12:16,360 >>WHAT A GREAT TWO DAYS. 5227 04:12:16,360 --> 04:12:18,920 I THINK WE HEARD ABOUT THE 5228 04:12:18,920 --> 04:12:21,280 TREMENDOUS ENERGY THERE IS IN 5229 04:12:21,280 --> 04:12:24,200 THIS COMMUNITY TO TRY TO MAKE A 5230 04:12:24,200 --> 04:12:28,440 REAL DIFFERENCE FOR PEOPLE WHO 5231 04:12:28,440 --> 04:12:34,120 HAVE ALS PEOPLE AT RISK FOR ALS 5232 04:12:34,120 --> 04:12:35,600 AND THOSE WHO GET IT IN THE 5233 04:12:35,600 --> 04:12:37,240 FUTURE AND DON'T HAVE ANY IDEA 5234 04:12:37,240 --> 04:12:38,080 YET THIS IS GOING TO HAPPEN TO 5235 04:12:38,080 --> 04:12:47,880 THEM. 5236 04:12:47,880 --> 04:12:50,120 FROM THE NINDS STANDPOINT, WE 5237 04:12:50,120 --> 04:12:55,200 ARE STICKING WITH THIS PLAN. 5238 04:12:55,200 --> 04:12:56,680 WE'RE NOT GOING AWAY. 5239 04:12:56,680 --> 04:13:01,760 WE THINK THIS IS INCREDIBLY 5240 04:13:01,760 --> 04:13:06,400 IMPORTANT YOU DIDN'T HAVE TO 5241 04:13:06,400 --> 04:13:07,320 CONVINCE US. 5242 04:13:07,320 --> 04:13:09,640 WE'VE KNOWN IT'S IMPORTANT AND 5243 04:13:09,640 --> 04:13:10,640 ALWAYS FELT BAD WE DIDN'T HAVE 5244 04:13:10,640 --> 04:13:18,120 THE THERAPIES WE WANT. 5245 04:13:18,120 --> 04:13:27,160 TO GET THE INPUT WILL HELP US. 5246 04:13:27,160 --> 04:13:31,960 AND THERE'S IDEAS IN A BIT BUT I 5247 04:13:31,960 --> 04:13:37,520 DID WANT TO GO THROUGH SOME OF 5248 04:13:37,520 --> 04:13:46,240 THE IMPORTANT NEXT STEPS AND WE 5249 04:13:46,240 --> 04:13:50,280 DID A LOT OF HEAVY LIFTING ON 5250 04:13:50,280 --> 04:13:52,480 OUR END AND OUR PROGRAM DIRECTOR 5251 04:13:52,480 --> 04:13:54,560 FOR ALS FOR A LONG TIME. 5252 04:13:54,560 --> 04:13:58,800 I WANT TO THANK EVERYONE FOR 5253 04:13:58,800 --> 04:14:00,240 PARTICIPATING WE HAD OVER 400 5254 04:14:00,240 --> 04:14:02,160 PEOPLE REGISTER FOR THE MEETING. 5255 04:14:02,160 --> 04:14:07,200 WE HAD TREMENDOUS INVOLVEMENT 5256 04:14:07,200 --> 04:14:10,800 RIGHT THROUGH. 5257 04:14:10,800 --> 04:14:14,800 WE HAD THE PUBLIC COMMENTS WERE 5258 04:14:14,800 --> 04:14:15,480 INCREDIBLY VALUABLE AND GAVE US 5259 04:14:15,480 --> 04:14:17,440 A LOT TO THINK ABOUT AS WE TRY 5260 04:14:17,440 --> 04:14:18,560 TO TACKLE THIS DIFFICULT AND 5261 04:14:18,560 --> 04:14:21,480 IMPORTANT PROBLEM. 5262 04:14:21,480 --> 04:14:22,960 I WANT TO GIVE A BIG THANKS TO 5263 04:14:22,960 --> 04:14:24,560 THE STEERING COMMITTEE AND 5264 04:14:24,560 --> 04:14:26,400 WORKING GROUPS WHO WORKED MANY 5265 04:14:26,400 --> 04:14:26,640 MONTHS. 5266 04:14:26,640 --> 04:14:30,720 THIS IS GOING ON FOR A YEAR NOW 5267 04:14:30,720 --> 04:14:34,600 ON DEVELOPING THE PRIORITIES. 5268 04:14:34,600 --> 04:14:37,400 AND THE NINDS STAFF AND EMILY 5269 04:14:37,400 --> 04:14:42,240 WHO RUNS THE SMALL BUSINESS 5270 04:14:42,240 --> 04:14:46,920 PROGRAM AND IT WILL BE CRITICAL 5271 04:14:46,920 --> 04:14:50,840 IN DEVELOPING THESE WITH 5272 04:14:50,840 --> 04:14:53,800 INDUSTRY AND SAM WHITE AND 5273 04:14:53,800 --> 04:14:57,800 REBECCA AND CHRISTINE WHO SPENT 5274 04:14:57,800 --> 04:14:59,640 SO MUCH TIME AND MOST 5275 04:14:59,640 --> 04:15:01,680 IMPORTANTLY TO THOSE WHO 5276 04:15:01,680 --> 04:15:02,400 PARTICIPATED AND SHARED YOUR 5277 04:15:02,400 --> 04:15:11,400 THOUGHTS AND IDEAS. 5278 04:15:11,400 --> 04:15:12,560 AND THE GROUP WILL TAKE THE 5279 04:15:12,560 --> 04:15:13,880 INPUT THEY RECEIVED HERE AND THE 5280 04:15:13,880 --> 04:15:18,840 COMMENTS COMING IN FROM THE 5281 04:15:18,840 --> 04:15:22,680 PUBLIC COMMENT PERIOD AND REVISE 5282 04:15:22,680 --> 04:15:25,280 THE DRAFT PRIORITIES WE'LL POST 5283 04:15:25,280 --> 04:15:27,880 THE REVISED DOCUMENT FOR FOR AT 5284 04:15:27,880 --> 04:15:30,360 LEAST 30 DAYS AND THE FINAL 5285 04:15:30,360 --> 04:15:32,320 PRIORITIES WILL THEN BE 5286 04:15:32,320 --> 04:15:33,760 PRESENTED TO THE COUNCIL 5287 04:15:33,760 --> 04:15:35,280 FEBRUARY 1 AND 2. 5288 04:15:35,280 --> 04:15:41,840 THE COUNCIL, I'M SURE, HAVING 5289 04:15:41,840 --> 04:15:43,320 SEEN THE QUALITY OF THE DOCUMENT 5290 04:15:43,320 --> 04:15:44,360 AND SURE THE COUNCIL OF OUR 5291 04:15:44,360 --> 04:15:49,480 INSTITUTE WILL HAVE SUGGESTIONS 5292 04:15:49,480 --> 04:15:57,000 AND COMMENTS AND IN TERMS OF 5293 04:15:57,000 --> 04:15:59,160 IMPLEMENTATION, WE'VE DONE THIS 5294 04:15:59,160 --> 04:16:00,720 BEFORE, THIS IS SOMETHING WE'VE 5295 04:16:00,720 --> 04:16:02,560 DONE IN OTHER DISEASES. 5296 04:16:02,560 --> 04:16:07,880 I'LL TALK ABOUT A COUPLE THINGS 5297 04:16:07,880 --> 04:16:12,880 THAT HAVE HAPPENED BEING 5298 04:16:12,880 --> 04:16:15,360 PREPARED HAS SOMETIMES TURNED 5299 04:16:15,360 --> 04:16:21,200 OUT TO BE INCREDIBLY HELPFUL. 5300 04:16:21,200 --> 04:16:24,960 SO JUST TWO EXAMPLES OVER A 5301 04:16:24,960 --> 04:16:26,400 DECADE AGO WE WERE ASKED TO 5302 04:16:26,400 --> 04:16:31,520 DEVELOP A PLAN FOR ALZHEIMER'S 5303 04:16:31,520 --> 04:16:32,040 RESEARCH. 5304 04:16:32,040 --> 04:16:36,320 A PROCESS HAPPENED MUCH LIKE 5305 04:16:36,320 --> 04:16:37,880 THIS AND WHAT FOLLOWED WAS 5306 04:16:37,880 --> 04:16:38,840 CONGRESS ASKED FOR A BUDGET TO 5307 04:16:38,840 --> 04:16:44,240 PUT THAT PLAN TOGETHER. 5308 04:16:44,240 --> 04:16:47,040 THEY ASKED FOR THE BUDGET TO 5309 04:16:47,040 --> 04:16:48,280 BYPASS HHS AND GO STRAIGHT TO 5310 04:16:48,280 --> 04:16:49,280 CONGRESS AND ACTUALLY FUNDED 5311 04:16:49,280 --> 04:16:49,840 THAT PLAN. 5312 04:16:49,840 --> 04:16:54,080 WHEN PEOPLE ARE WORKING ON IT 5313 04:16:54,080 --> 04:16:56,640 THERE WAS A LOT OF CYNICISM BUT 5314 04:16:56,640 --> 04:16:57,800 NO MORE CYNICISM. 5315 04:16:57,800 --> 04:17:08,200 IT ALL CAME TO FRUITION. 5316 04:17:08,840 --> 04:17:11,920 AND WE WORKED ON A PLAN FOR A 5317 04:17:11,920 --> 04:17:12,600 FEDERAL PAIN RESEARCH STRATEGY 5318 04:17:12,600 --> 04:17:16,240 ACROSS THE COUNTRY. 5319 04:17:16,240 --> 04:17:19,120 WIZ WAS PUBLISHED. 5320 04:17:19,120 --> 04:17:21,920 THERE WERE IMPROVEMENTS MADE BUT 5321 04:17:21,920 --> 04:17:23,560 THEN THE HEAL INITIATIVE CAME 5322 04:17:23,560 --> 04:17:29,160 AND CONGRESS APPROPRIATED 5323 04:17:29,160 --> 04:17:38,320 SIGNIFICANT AMOUNTS OF FUNDS AND 5324 04:17:38,320 --> 04:17:48,800 WE HAD CONSIDERABLE FUNDING. 5325 04:17:50,600 --> 04:17:52,240 THERE'S NOTHING BEING PREPARED 5326 04:17:52,240 --> 04:17:55,960 AND WITH THIS GROUP WE PREPARED. 5327 04:17:55,960 --> 04:18:00,120 NOW WE HAVE TO USE THE RESOURCES 5328 04:18:00,120 --> 04:18:02,200 WE PUT TOGETHER TO MAKE A 5329 04:18:02,200 --> 04:18:12,440 DIFFERENCE. 5330 04:18:14,680 --> 04:18:17,480 AND TO DRIVE THE ENABLERS AND 5331 04:18:17,480 --> 04:18:18,560 GIVE THEM THE RESOURCES THEY 5332 04:18:18,560 --> 04:18:19,240 NEED TO MAKE THE BIGGEST 5333 04:18:19,240 --> 04:18:29,440 DIFFERENCE. 5334 04:18:29,760 --> 04:18:31,000 YOU KNOW THERE'S GOING TO BE 5335 04:18:31,000 --> 04:18:32,400 DISCOVERIES AND ADVANCES BUT 5336 04:18:32,400 --> 04:18:33,720 IT'S HARD TO PREDICT WHERE 5337 04:18:33,720 --> 04:18:38,160 THEY'LL COME FROM. 5338 04:18:38,160 --> 04:18:43,600 WE HAVE TO BE CAREFUL ABOUT 5339 04:18:43,600 --> 04:18:47,680 GOING DOWN A TUNNEL WHEN THE 5340 04:18:47,680 --> 04:18:49,320 ADVANCES CAN COME MANY MILES 5341 04:18:49,320 --> 04:18:50,880 FROM WHERE YOUR DIGGING. 5342 04:18:50,880 --> 04:18:52,480 YOU HAVE TO BE MORE STRATEGIC IN 5343 04:18:52,480 --> 04:18:54,880 TERMS OF ENABLING LOTS OF 5344 04:18:54,880 --> 04:18:56,520 FLOWERS TO BLOOM WHERE THERE'S A 5345 04:18:56,520 --> 04:18:59,000 SINGULAR FOCUS AND HERE IN ALS, 5346 04:18:59,000 --> 04:19:09,520 IT'S CLEAR WHAT THE FOCUS IS 5347 04:19:11,520 --> 04:19:12,080 BETTER TREATMENT NOR DISEASE AND 5348 04:19:12,080 --> 04:19:13,760 WHAT IT TAKES TO GET TO THE 5349 04:19:13,760 --> 04:19:15,160 TREATMENT AND MOVE IN THAT 5350 04:19:15,160 --> 04:19:15,440 DIRECTION. 5351 04:19:15,440 --> 04:19:22,080 THAT WOULD BE OUR PLAN. 5352 04:19:22,080 --> 04:19:25,720 I WON'T BE ABLE TO TALK ABOUT 5353 04:19:25,720 --> 04:19:26,320 ALL THE THINGS THAT CAME UP 5354 04:19:26,320 --> 04:19:31,400 TODAY BUT I WOULD SAY A COUPLE 5355 04:19:31,400 --> 04:19:40,600 THINGS AND THERE IS A 5356 04:19:40,600 --> 04:19:41,960 MISPERCEPTION NIH MAKES THINGS 5357 04:19:41,960 --> 04:19:42,200 HAPPEN. 5358 04:19:42,200 --> 04:19:43,640 IT'S A GRANTING AGENCY. 5359 04:19:43,640 --> 04:19:45,880 FOR THINGS TO HAPPEN, PEOPLE 5360 04:19:45,880 --> 04:19:49,120 HAVE TO COME TOGETHER LIKE WE 5361 04:19:49,120 --> 04:19:51,600 CAME TOGETHER HERE AND DEVOTE 5362 04:19:51,600 --> 04:19:52,400 THEMSELVES TO A PROJECT AND 5363 04:19:52,400 --> 04:19:53,800 SUBMIT IT AS A GRANT AND THAT'S 5364 04:19:53,800 --> 04:19:56,960 HOW THE MONEY GOES OUT TO GET 5365 04:19:56,960 --> 04:20:00,720 THINGS DONE. 5366 04:20:00,720 --> 04:20:01,120 THA 5367 04:20:01,120 --> 04:20:06,840 THAT'S LEGISLATIVE. 5368 04:20:06,840 --> 04:20:09,760 THERE'S NO EXCEPTIONS EXCEPT FOR 5369 04:20:09,760 --> 04:20:12,160 LIKE COVID. 5370 04:20:12,160 --> 04:20:13,160 THAT'S THE PROCESS THAT'S MADE 5371 04:20:13,160 --> 04:20:14,080 NIH WHAT IT IS. 5372 04:20:14,080 --> 04:20:18,200 RIGHT NOW WITH THIS PLAN, AS HAS 5373 04:20:18,200 --> 04:20:22,640 BEEN SEEN, IT WON'T BE TURNED 5374 04:20:22,640 --> 04:20:27,480 UPSIDE-DOWN AND PEOPLE CAN 5375 04:20:27,480 --> 04:20:33,000 PEOPLE CAN START TO GALVANIZE ON 5376 04:20:33,000 --> 04:20:34,760 WHAT'S IMPORTANT TO DO AND WE 5377 04:20:34,760 --> 04:20:37,600 KNOW WHERE WE WANT TO GO IN THE 5378 04:20:37,600 --> 04:20:39,000 END BUT I WON'T TELL PEOPLE NOT 5379 04:20:39,000 --> 04:20:40,320 TO DO THING IF IT FITS. 5380 04:20:40,320 --> 04:20:42,040 AND IT DEPS ON WHAT THE 5381 04:20:42,040 --> 04:20:43,440 INVESTIGATORS AND PATIENTS WHO 5382 04:20:43,440 --> 04:20:44,640 WORK WITH THE INVESTIGATORS ON 5383 04:20:44,640 --> 04:20:46,360 THE OUTSIDE REALLY WANT TO DO 5384 04:20:46,360 --> 04:20:48,920 AND THERE'S NOTHING TO STOP THAT 5385 04:20:48,920 --> 04:20:59,440 FROM HAPPENING LIKE TOMORROW. 5386 04:21:00,760 --> 04:21:02,480 AND IF YOU DON'T HAVE A 5387 04:21:02,480 --> 04:21:03,840 MECHANISM FOR EVERY SINGLE 5388 04:21:03,840 --> 04:21:05,200 DISEASE YOU'D BE PARALYZED. 5389 04:21:05,200 --> 04:21:07,320 INSTEAD WHAT WE'VE DONE OVER THE 5390 04:21:07,320 --> 04:21:09,320 YEARS IS DEVELOP MECHANISMS THAT 5391 04:21:09,320 --> 04:21:12,080 WOULD ENABLE PRETTY MUCH 5392 04:21:12,080 --> 04:21:13,560 ANYTHING TO HAPPEN TO MOVE A 5393 04:21:13,560 --> 04:21:14,640 DISEASE FORWARD. 5394 04:21:14,640 --> 04:21:16,560 MANY THINGS WE TALKED ABOUT, ARE 5395 04:21:16,560 --> 04:21:25,680 DOABLE IMMEDIATELY. 5396 04:21:25,680 --> 04:21:29,240 AND WE HAVE BIOMARKERS. 5397 04:21:29,240 --> 04:21:31,560 WE HAVE BIOMARKER ANALYTIC 5398 04:21:31,560 --> 04:21:32,400 VALIDATION AND CLINICAL 5399 04:21:32,400 --> 04:21:35,000 VALIDATION AND HAVE BIOMARKERS 5400 04:21:35,000 --> 04:21:35,960 IN PHASE 2 TRIALS. 5401 04:21:35,960 --> 04:21:42,120 WE HAVE NETWORKS SET UP TO DO 5402 04:21:42,120 --> 04:21:50,160 PHASE 2 TRIALS. 5403 04:21:50,160 --> 04:21:56,600 AND THE KEY THING FOR NINDS IS 5404 04:21:56,600 --> 04:22:01,480 TO BRING THESE TOGETHER AND JUST 5405 04:22:01,480 --> 04:22:03,840 LETTING THE FLOWERS BLOOM CAN 5406 04:22:03,840 --> 04:22:06,400 GET YOU INEFFICIENCIES AS WELL 5407 04:22:06,400 --> 04:22:16,640 AS INNOVATION. 5408 04:22:18,160 --> 04:22:19,800 AND INEFFICIENCY IS NOT 5409 04:22:19,800 --> 04:22:21,160 ACCEPTABLE GIVEN THE URGENCY OF 5410 04:22:21,160 --> 04:22:23,560 THE DISEASE AND DEVELOPING AN 5411 04:22:23,560 --> 04:22:24,600 ORGANIZATION DRIVING ALS 5412 04:22:24,600 --> 04:22:27,040 RESEARCH FORWARD SO THE ULTIMATE 5413 04:22:27,040 --> 04:22:31,320 SHARED GOAL WE ALL HAVE IS WHAT 5414 04:22:31,320 --> 04:22:36,440 WE CAN DO TOGETHER AS A COMMUNED 5415 04:22:36,440 --> 04:22:37,640 AND THE GOVERNMENT I THINK WE 5416 04:22:37,640 --> 04:22:39,000 DON'T WANT TO TAKE OVER THE 5417 04:22:39,000 --> 04:22:41,440 WORLD BUT WE THINK WE CAN MAKE A 5418 04:22:41,440 --> 04:22:43,640 BIG DIFFERENCE IN THAT SPACE. 5419 04:22:43,640 --> 04:22:50,960 REALLY LOOKING FORWARD TO THE 5420 04:22:50,960 --> 04:22:51,640 PUBLIC-PRIVATE PARTNERSHIP WITH 5421 04:22:51,640 --> 04:22:52,720 THE FDA AND ANOTHER SPACE WHERE 5422 04:22:52,720 --> 04:22:54,760 THE WORK DONE IN THE LAST TWO 5423 04:22:54,760 --> 04:22:56,000 DAYS DOESN'T END AND GOES ON 5424 04:22:56,000 --> 04:23:06,560 UNTIL WE GET TO THE FINAL CALL. 5425 04:23:09,840 --> 04:23:12,920 AND WE BROUGHT IN DATA FROM 5426 04:23:12,920 --> 04:23:14,880 DIFFERENT STREAMS AND WE HAVE 5427 04:23:14,880 --> 04:23:16,680 TRANSCRIPTOMIC DATA AND CLINICAL 5428 04:23:16,680 --> 04:23:18,480 DATA AND WHOLE GENOME SEQUENCING 5429 04:23:18,480 --> 04:23:20,520 DATA AND HAVE ABOUT 10,000 5430 04:23:20,520 --> 04:23:22,840 PEOPLE IN THAT DATABASE RIGHT 5431 04:23:22,840 --> 04:23:28,440 NOW AND IT'S OPEN SOURCE AND 5432 04:23:28,440 --> 04:23:30,080 ANYBODY CAN GO IN AND MINE THE 5433 04:23:30,080 --> 04:23:34,520 DATA AND THE PORTAL IS A 5434 04:23:34,520 --> 04:23:37,360 SOPHISTICATED PORTAL AND THAT 5435 04:23:37,360 --> 04:23:40,080 CAN BE GALVANIZING AND CAN BE AN 5436 04:23:40,080 --> 04:23:42,080 ORGANIZING PRINCIPLE WHERE THE 5437 04:23:42,080 --> 04:23:46,000 DATA COMES IN AND THE PEOPLE WHO 5438 04:23:46,000 --> 04:23:47,840 ARE CONTRIBUTING ARE SEEING THE 5439 04:23:47,840 --> 04:23:52,360 VALUE OF BRINGING THAT DATA INTO 5440 04:23:52,360 --> 04:23:56,560 A REAL ORGANIZED PORTAL AND CAN 5441 04:23:56,560 --> 04:23:57,720 GALVANIZE A LOT OF BECAUSE YOU 5442 04:23:57,720 --> 04:23:59,040 DEVELOP STANDARDS ONES THEY'RE 5443 04:23:59,040 --> 04:23:59,760 DEVELOPED, EVERYBODY WILL USE 5444 04:23:59,760 --> 04:24:01,440 THEM AND THAT MAKES THE DATA 5445 04:24:01,440 --> 04:24:06,400 MORE COMPARABLE AND YOU CAN JUST 5446 04:24:06,400 --> 04:24:13,160 ADD ON WITH WHAT'S IN THERE 5447 04:24:13,160 --> 04:24:14,720 UNTIL PEOPLE CAN MAKE THE 5448 04:24:14,720 --> 04:24:19,760 DISCOVERIES THEY WANT TO MAKE. 5449 04:24:19,760 --> 04:24:23,720 AND THAT'S THE INDUSTRY AS WELL 5450 04:24:23,720 --> 04:24:25,120 AS ACADEMIC PEOPLE AND THE 5451 04:24:25,120 --> 04:24:26,360 PEOPLE LOOKING AT DATA ARE NOT 5452 04:24:26,360 --> 04:24:27,400 THE DOCTORS. 5453 04:24:27,400 --> 04:24:29,640 AT MEDICAL SCHOOL WE WERE NOT 5454 04:24:29,640 --> 04:24:31,360 TRAINED IN BIG DATA ANALYTICS. 5455 04:24:31,360 --> 04:24:38,080 SO WE NEED PEOPLE FROM THE TECH 5456 04:24:38,080 --> 04:24:43,760 FIELD TO HELP GET THAT GOING 5457 04:24:43,760 --> 04:24:53,400 WHEN IT COMES IN. 5458 04:24:53,400 --> 04:24:56,360 AND CPAP HAS A RECORD FROM 5459 04:24:56,360 --> 04:24:59,120 BRINGING IN DATA FROM COMPANIES 5460 04:24:59,120 --> 04:24:59,720 AND PLACEBO DATA AND TRIALS 5461 04:24:59,720 --> 04:25:03,280 ALONG WITH ACADEMICS AND WE HAVE 5462 04:25:03,280 --> 04:25:05,520 PEOPLE WHO ARE HIGH-LEVEL 5463 04:25:05,520 --> 04:25:06,120 ANALYTICS FOLKS TO LOOK AT THE 5464 04:25:06,120 --> 04:25:08,040 DATA. 5465 04:25:08,040 --> 04:25:18,600 THAT'S ONE POSSIBILITY AS WELL. 5466 04:25:25,080 --> 04:25:28,200 AND THE AMP IS THE INDUSTRY 5467 04:25:28,200 --> 04:25:29,160 ADVOCACY ORGANIZATION AND NINDS 5468 04:25:29,160 --> 04:25:32,880 AND NIH PARTNERSHIP. 5469 04:25:32,880 --> 04:25:35,760 AND I THINK THOSE THINGS ARE 5470 04:25:35,760 --> 04:25:36,000 DOABLE. 5471 04:25:36,000 --> 04:25:39,120 THEY'LL TAKE TIME TO SET UP AND 5472 04:25:39,120 --> 04:25:41,880 I THINK THE AMP PORTAL TOOK US 5473 04:25:41,880 --> 04:25:45,200 MAYBE THREE YEARS TO SET UP. 5474 04:25:45,200 --> 04:25:47,880 IT'S AN INCREDIBLE AMOUNT OF 5475 04:25:47,880 --> 04:25:50,320 WORK TO TRANSFORM THE DATA 5476 04:25:50,320 --> 04:25:52,680 COMING IN HAVE VARIOUS SOURCES. 5477 04:25:52,680 --> 04:25:54,640 IT'S COMPARABLE DATA. 5478 04:25:54,640 --> 04:25:56,680 THE COST IS NOT INSIGNIFICANT. 5479 04:25:56,680 --> 04:26:02,640 IT WAS ABOUT $25 MILLION FOR THE 5480 04:26:02,640 --> 04:26:03,720 PARKINSON'S AMP AND IT TAKES 5481 04:26:03,720 --> 04:26:14,160 PEOPLE WILLING TO DO THAT. 5482 04:26:18,400 --> 04:26:20,800 AND LOOKING AT THE BIOMARKER 5483 04:26:20,800 --> 04:26:22,520 PROGRAMS AND PARKINSON'S. 5484 04:26:22,520 --> 04:26:23,920 THE PEOPLE WHO DID THEY'LL WORK 5485 04:26:23,920 --> 04:26:24,400 AND BROUGHT IN THE DATA 5486 04:26:24,400 --> 04:26:26,200 TOGETHER. 5487 04:26:26,200 --> 04:26:28,600 WE CAN'T FORCE THAT TO HAPPEN. 5488 04:26:28,600 --> 04:26:39,120 WE CAN CERTAINLY INCENTIVIZE IT. 5489 04:26:46,120 --> 04:26:50,040 THE FDA ANNOUNCED THEY'LL BE 5490 04:26:50,040 --> 04:26:50,800 LAUNCHING IN THEIR 5491 04:26:50,800 --> 04:26:52,320 NEURODEGENERATIVE DISEASE 5492 04:26:52,320 --> 04:26:53,480 NATURAL HISTORY PROGRAM AND ALS 5493 04:26:53,480 --> 04:26:54,600 NATURAL HISTORY TRIAL AT THE 5494 04:26:54,600 --> 04:27:00,640 UNIVERSITY OF MINNESOTA AND WE 5495 04:27:00,640 --> 04:27:01,240 WILL BE WORKING WITH THEM ON 5496 04:27:01,240 --> 04:27:09,480 THAT PROCESS. 5497 04:27:09,480 --> 04:27:14,400 AND WITH THE DATA, AFTER MANY 5498 04:27:14,400 --> 04:27:16,720 YEARS, FINALLY NIH HAS MOVED TO 5499 04:27:16,720 --> 04:27:20,480 A DATA POLICY PRETTY STRINGENT. 5500 04:27:20,480 --> 04:27:22,360 AS OF JANUARY, ANY GRANT COMING 5501 04:27:22,360 --> 04:27:32,840 IN THE DATA HAS TO BE POSTED 5502 04:27:38,640 --> 04:27:43,920 THAT'S GOING CHANGE OUR SYSTEM. 5503 04:27:43,920 --> 04:27:45,800 WHAT NIH HAS NOT DONE IS 5504 04:27:45,800 --> 04:27:49,320 MANDATED THE DATA IS POSTED IN A 5505 04:27:49,320 --> 04:27:51,720 PARTICULAR FASHION AND THAT 5506 04:27:51,720 --> 04:27:55,560 THEY'RE LEAVING UP TO THE 5507 04:27:55,560 --> 04:27:56,280 SCIENCE COMMUNITY. 5508 04:27:56,280 --> 04:28:01,600 THERE ARE GRANT APPLICATIONS OUT 5509 04:28:01,600 --> 04:28:12,160 NOW SO BRING DATA IN AND -- TO 5510 04:28:12,880 --> 04:28:14,360 BRING DATA IN AND THE COMMUNITY 5511 04:28:14,360 --> 04:28:18,080 CAN DECIDE WHAT THE DATA SHOULD 5512 04:28:18,080 --> 04:28:19,840 LOOK LIKE AND START NOW IN TERMS 5513 04:28:19,840 --> 04:28:23,840 OF BRINGING THE DATA IN. 5514 04:28:23,840 --> 04:28:25,360 ANOTHER EXAMPLE OF MECHANISMS 5515 04:28:25,360 --> 04:28:26,440 OUT THERE TO DO A LOT OF THE 5516 04:28:26,440 --> 04:28:30,080 THINGS THAT PEOPLE WANT TO DO 5517 04:28:30,080 --> 04:28:32,360 AND WE ARE CERTAINLY GOING TO 5518 04:28:32,360 --> 04:28:34,520 PUT PLANS TOGETHER AND THERE'LL 5519 04:28:34,520 --> 04:28:38,080 BE PROGRAMS THAT FOLLOW THIS 5520 04:28:38,080 --> 04:28:39,920 PLAN BUT IN TERMS OF THE TIME 5521 04:28:39,920 --> 04:28:42,000 FRAME IF YOU THINK IT'S URGENT, 5522 04:28:42,000 --> 04:28:43,160 THEN DON'T WAIT. 5523 04:28:43,160 --> 04:28:45,840 LOOK AT WHAT'S AVAILABLE AND 5524 04:28:45,840 --> 04:28:49,960 CALL ME, WHATEVER YOU WANT TO 5525 04:28:49,960 --> 04:28:54,200 DO, I THINK WE CAN FIND OUT A 5526 04:28:54,200 --> 04:29:01,040 WAY TO DO WITHOUT WAITING AND 5527 04:29:01,040 --> 04:29:02,560 THINGS WILL GET BETTER AND 5528 04:29:02,560 --> 04:29:06,960 BETTER BECAUSE OF THE WORK YOU 5529 04:29:06,960 --> 04:29:10,360 DO FOR PEOPLE WITH ALS AND THE 5530 04:29:10,360 --> 04:29:15,280 WORK THE PEOPLE AT ALS DO TO 5531 04:29:15,280 --> 04:29:20,440 HELP SOMETIMES THEY'RE DOING 5532 04:29:20,440 --> 04:29:21,480 THIS TO HELP OTHERS AND PUTTING 5533 04:29:21,480 --> 04:29:28,560 OUT MONEY TO GO TO SAN FRANCISCO 5534 04:29:28,560 --> 04:29:31,040 THAT'S ALTRUISM MORE THAN ANYONE 5535 04:29:31,040 --> 04:29:39,040 SHOULD EXPECT ANYBODY TO DO. 5536 04:29:39,040 --> 04:29:44,800 WE HAVE TO DO THE BEST WE CAN TO 5537 04:29:44,800 --> 04:29:48,920 TRY TO THE QUALITY OF LIFE OF 5538 04:29:48,920 --> 04:29:49,920 PEOPLE LIVING WITH THE DISEASE 5539 04:29:49,920 --> 04:29:53,840 IS A STRONG STATEMENT THAT CAME 5540 04:29:53,840 --> 04:29:54,080 OUT. 5541 04:29:54,080 --> 04:29:58,360 THE FOCUS AS I SAID IS TO GET A 5542 04:29:58,360 --> 04:30:00,320 TREATMENT SO PEOPLE DON'T SUFFER 5543 04:30:00,320 --> 04:30:03,520 BUT WE ALSO HAVE TO THINK ABOUT 5544 04:30:03,520 --> 04:30:05,040 THINGS WE CAN DO AND THERE ARE 5545 04:30:05,040 --> 04:30:07,640 THINGS WE CAN DO TO ADVANCE THE 5546 04:30:07,640 --> 04:30:09,280 QUALITY OF LIFE FOR PEOPLE WHO 5547 04:30:09,280 --> 04:30:10,360 HAVE THE ILLNESS. 5548 04:30:10,360 --> 04:30:15,600 AND SO I THINK THAT WAS ANOTHER 5549 04:30:15,600 --> 04:30:19,960 REALLY STRONG SENTIMENT OF THE 5550 04:30:19,960 --> 04:30:20,400 GROUP. 5551 04:30:20,400 --> 04:30:24,320 WITH THAT ONCE AGAIN, THINK 5552 04:30:24,320 --> 04:30:25,040 ABOUT WHAT YOU HEARD THINK ABOUT 5553 04:30:25,040 --> 04:30:26,400 WHAT YOU WANT TO DO AS A 5554 04:30:26,400 --> 04:30:29,520 COMMUNITY AND LET'S GET STARTED. 5555 04:30:29,520 --> 04:30:31,680 THEN WE'LL BE WORKING WITH THIS 5556 04:30:31,680 --> 04:30:35,920 PLAN TO REALLY TRY TO PUT A LOT 5557 04:30:35,920 --> 04:30:38,040 MORE MUSCLE INTO THE WORK YOU 5558 04:30:38,040 --> 04:30:38,840 WANT TO GET DONE FOR PEOPLE WITH 5559 04:30:38,840 --> 04:30:42,960 ALS. 5560 04:30:42,960 --> 04:30:44,520 WITH THAT, THANKS SO MUCH AND 5561 04:30:44,520 --> 04:30:50,040 THANKS TO BOB AND RITA AND I 5562 04:30:50,040 --> 04:30:52,400 HATE TO HAVE THE LAST WORD SO 5563 04:30:52,400 --> 04:30:53,800 RITA, HAVE THE WORD. 5564 04:30:53,800 --> 04:30:56,840 >>THANK YOU, WALTER. 5565 04:30:56,840 --> 04:30:59,840 >>MY LAST WORD IS TO THANK ALL 5566 04:30:59,840 --> 04:31:01,120 OF THE NIH STAFF. 5567 04:31:01,120 --> 04:31:03,760 IT WAS REALLY THEM WHO PULLED US 5568 04:31:03,760 --> 04:31:06,760 TOGETHER WHO REMINDED US TO GIVE 5569 04:31:06,760 --> 04:31:08,720 US THE DEADLINE WHO PROVIDED A 5570 04:31:08,720 --> 04:31:10,520 FRAMEWORK THAT ALLOWED ALL THE 5571 04:31:10,520 --> 04:31:12,480 WORKING GROUP MEMBERS TO REALLY 5572 04:31:12,480 --> 04:31:15,480 ACCOMPLISH WHAT THEY HAVE 5573 04:31:15,480 --> 04:31:15,800 ACCOMPLISHED. 5574 04:31:15,800 --> 04:31:17,000 IT WAS AN INCREDIBLE 5575 04:31:17,000 --> 04:31:17,680 ACCOMPLISHMENT AND I THINK 5576 04:31:17,680 --> 04:31:19,280 EVERYONE CAN PAT THEMSELVES ON 5577 04:31:19,280 --> 04:31:20,280 THE SHOULDER. 5578 04:31:20,280 --> 04:31:22,000 BOB WAS INCREDIBLE TO WORK WITH. 5579 04:31:22,000 --> 04:31:23,720 IT WAS A PLEASURE TO DO THIS 5580 04:31:23,720 --> 04:31:25,640 WITH HIM AS A CO-CHAIR AND I 5581 04:31:25,640 --> 04:31:29,920 COULD NOT HAVE ASKED FOR A 5582 04:31:29,920 --> 04:31:31,280 BETTER PERSON TO LEAD THE 5583 04:31:31,280 --> 04:31:31,600 EFFORT. 5584 04:31:31,600 --> 04:31:33,000 IT'S BEEN WONDERFUL TO WORK WITH 5585 04:31:33,000 --> 04:31:35,520 EVERYBODY AND WE LOOK FORWARD TO 5586 04:31:35,520 --> 04:31:38,720 CONTINUE THE WORK, INTEGRATE THE 5587 04:31:38,720 --> 04:31:39,840 COMMENTS FROM THE AUDIENCE TODAY 5588 04:31:39,840 --> 04:31:42,360 AND YESTERDAY TO MAKE IT A 5589 04:31:42,360 --> 04:31:43,680 BETTER STRATEGIC PLAN WE PUT 5590 04:31:43,680 --> 04:31:48,360 TOGETHER THAT WE THEN PRESENT TO 5591 04:31:48,360 --> 04:31:50,600 COUNCIL AND HOPEFULLY FROM THERE 5592 04:31:50,600 --> 04:31:52,360 GREAT THINGS WILL HAPPEN WITH 5593 04:31:52,360 --> 04:31:53,360 WHAT WE ACCOMPLISHED. 5594 04:31:53,360 --> 04:31:54,040 THANK YOU, EVERYBODY. 5595 04:31:54,040 --> 04:31:56,280 >>I WOULD SAY, I STARTED 5596 04:31:56,280 --> 04:31:58,200 LEARNING FROM BOB IN 1981 AND 5597 04:31:58,200 --> 04:32:03,120 I'M STILL LEARNING. 5598 04:32:03,120 --> 04:32:03,640 >>THANK YOU, ALL. 5599 04:32:03,640 --> 04:32:03,920 GREAT DAY. 5600 04:32:03,920 --> 04:32:05,080 >>THANK YOU. 5601 04:32:05,080 --> 04:32:06,000 , EVERYBODY. 5602 04:32:06,000 --> 04:32:16,320 >>THANK YOU.