1 00:00:06,602 --> 00:00:08,871 THANK YOU FOR JOINING US FOR 2 00:00:08,871 --> 00:00:10,806 THIS SECOND OF THE TWO VIRTUAL 3 00:00:10,806 --> 00:00:14,276 TOWN HALL FORUMS HOSTED BY THE 4 00:00:14,276 --> 00:00:15,911 NATIONAL COMMISSION ON LYMPHATIC 5 00:00:15,911 --> 00:00:16,679 DISEASES, NCLD, TO ELEVATE THE 6 00:00:16,679 --> 00:00:19,348 VOICES OF INDIVIDUALS LIVING 7 00:00:19,348 --> 00:00:20,950 WITH LYMPHATIC DISEASES. 8 00:00:20,950 --> 00:00:22,318 TODAY NCLD MEMBERS WILL ENGAGE 9 00:00:22,318 --> 00:00:24,954 WITH ORGANIZATIONS THAT PROMOTE 10 00:00:24,954 --> 00:00:26,622 EDUCATION, RESEARCH AND ADVOCACY 11 00:00:26,622 --> 00:00:28,858 FOR PEOPLE LIVING WITH RARE 12 00:00:28,858 --> 00:00:30,192 LYMPHATIC DISEASES, AS WELL AS 13 00:00:30,192 --> 00:00:32,862 THOSE DIRECTLY AFFECTED BY THOSE 14 00:00:32,862 --> 00:00:35,297 CONDITIONS. 15 00:00:35,297 --> 00:00:36,565 PARTICIPANTS WILL SHARE PERSONAL 16 00:00:36,565 --> 00:00:37,399 EXPERIENCES HIGHLIGHTING THE 17 00:00:37,399 --> 00:00:39,435 CHALLENGES AND OBSTACLES THEY 18 00:00:39,435 --> 00:00:41,237 FACE IN ACCESSING EFFECTIVE 19 00:00:41,237 --> 00:00:43,305 HEALTHCARE AND SUPPORT. 20 00:00:43,305 --> 00:00:45,274 I AM SELEN CATANIA, PROGRAM 21 00:00:45,274 --> 00:00:47,710 OFFICER IN NATIONAL HEART, LUNG, 22 00:00:47,710 --> 00:00:49,845 BLOOD INSTITUTE, NHLBI, IN 23 00:00:49,845 --> 00:00:51,213 DIVISION OF CARDIOVASCULAR 24 00:00:51,213 --> 00:00:51,480 SCIENCES. 25 00:00:51,480 --> 00:00:53,282 I'M THE EXECUTIVE SECRETARY OF 26 00:00:53,282 --> 00:00:55,317 THIS COMMISSION SERVING AS 27 00:00:55,317 --> 00:00:58,087 LIAISON BETWEEN NCLD AND THE 28 00:00:58,087 --> 00:00:58,854 NHLBI'S LEADERSHIP. 29 00:00:58,854 --> 00:01:03,225 I'M REPRESENTING HERE A 30 00:01:03,225 --> 00:01:05,094 CONSIDERABLY LARGE NHLBI 31 00:01:05,094 --> 00:01:05,895 STRUCTURE FOR THIS COMMISSION. 32 00:01:05,895 --> 00:01:07,663 I'M GOING TO MAKE A FEW 33 00:01:07,663 --> 00:01:09,665 ADMINISTRATIVE ANNOUNCEMENTS AND 34 00:01:09,665 --> 00:01:10,666 SOME HOUSEKEEPING REMINDERS 35 00:01:10,666 --> 00:01:11,533 BEFORE WE GET STARTED. 36 00:01:11,533 --> 00:01:13,335 FIRST I WANT TO WELCOME ALL OUR 37 00:01:13,335 --> 00:01:14,403 PUBLIC VISITORS AS WELL AS THE 38 00:01:14,403 --> 00:01:16,005 STAFF TO THIS BROADCAST BROUGHT 39 00:01:16,005 --> 00:01:18,240 TO YOU BY NIH VIDEOCAST. 40 00:01:18,240 --> 00:01:19,341 AND WE ARE LOOKING FORWARD TO 41 00:01:19,341 --> 00:01:21,043 YOUR FEEDBACK. 42 00:01:21,043 --> 00:01:22,378 LISTENERS ON THE VIDEOCAST 43 00:01:22,378 --> 00:01:25,781 ENVIRONMENT CAN USE THE "SEND 44 00:01:25,781 --> 00:01:26,849 FEEDBACK" BUTTON RIGHT UNDER 45 00:01:26,849 --> 00:01:27,883 YOUR WEBCAST SCREEN. 46 00:01:27,883 --> 00:01:29,018 ALL YOUR QUESTIONS AND FEEDBACK 47 00:01:29,018 --> 00:01:34,089 WILL BE RECORDED AND TAKEN INTO 48 00:01:34,089 --> 00:01:34,757 CONSIDERATION BY THE COMMISSION 49 00:01:34,757 --> 00:01:35,891 AFTER THE MEETING. 50 00:01:35,891 --> 00:01:37,960 TODAY'S MEETING IS BEING 51 00:01:37,960 --> 00:01:39,161 WEBCASTED AND RECORDED. 52 00:01:39,161 --> 00:01:40,262 THE VIDEO WILL BE ARCHIVED AND 53 00:01:40,262 --> 00:01:42,665 WILL BE AVAILABLE FOR THE PUBLIC 54 00:01:42,665 --> 00:01:44,533 AND OUR NIH COLLEAGUES FOR AN 55 00:01:44,533 --> 00:01:47,803 INDEFINITE AMOUNT OF TIME. 56 00:01:47,803 --> 00:01:49,204 A BRIEF OVERVIEW OF TODAY'S 57 00:01:49,204 --> 00:01:51,106 AGENDA IS GOING TO BE STARTING 58 00:01:51,106 --> 00:01:54,910 WITH WELCOME REMARKS BY THE NCLD 59 00:01:54,910 --> 00:01:56,378 CO-CHAIR, MS. STEPHANIE DREYER, 60 00:01:56,378 --> 00:01:59,148 AND THEN WE WILL START THE 61 00:01:59,148 --> 00:01:59,982 PRESENTATIONS, I'LL ANNOUNCE THE 62 00:01:59,982 --> 00:02:02,451 FIRST SPEAKER OF EACH INVITED 63 00:02:02,451 --> 00:02:03,686 ORGANIZATION FOR THEIR 64 00:02:03,686 --> 00:02:04,019 PRESENTATION. 65 00:02:04,019 --> 00:02:05,621 OUR AV TEAM WILL RUN YOUR 66 00:02:05,621 --> 00:02:06,088 SLIDES. 67 00:02:06,088 --> 00:02:07,990 PLEASE SAY "NEXT SLIDE" AND OUR 68 00:02:07,990 --> 00:02:09,491 TEAM WILL ADVANCE YOUR SLIDES 69 00:02:09,491 --> 00:02:11,760 FOR YOU. 70 00:02:11,760 --> 00:02:14,263 AFTER THAT, PLEASE PRESENT -- 71 00:02:14,263 --> 00:02:16,031 WHEN YOU ARE FINISHED, PLEASE 72 00:02:16,031 --> 00:02:17,266 ANNOUNCE THE NEXT PRESENTER FROM 73 00:02:17,266 --> 00:02:18,434 YOUR ORGANIZATION. 74 00:02:18,434 --> 00:02:21,303 YOU WILL BE SPOTLIGHTED DURING 75 00:02:21,303 --> 00:02:22,571 YOUR PRESENTATION AS A SPEAKER 76 00:02:22,571 --> 00:02:24,773 AND WHEN I ALSO APPEAR, IT WILL 77 00:02:24,773 --> 00:02:26,475 BE A SIGN THAT YOU HAVE ONE 78 00:02:26,475 --> 00:02:28,644 MINUTE LEFT. 79 00:02:28,644 --> 00:02:31,647 AFTER THIS, WE WILL HAVE THE 80 00:02:31,647 --> 00:02:35,050 CLOSING DISCUSSIONS THAT WILL BE 81 00:02:35,050 --> 00:02:37,186 LED BY THE NCLD CO-CHAIR, 82 00:02:37,186 --> 00:02:38,721 DR. STANLEY ROCKSON. 83 00:02:38,721 --> 00:02:40,022 THE MEETING WILL ADJOURN WITH 84 00:02:40,022 --> 00:02:42,624 THE CLOSING REMARKS BY NCLD 85 00:02:42,624 --> 00:02:43,325 CO-CHAIRS. 86 00:02:43,325 --> 00:02:44,660 WE REQUEST EVERYONE IN ZOOM TO 87 00:02:44,660 --> 00:02:45,794 TURN THEIR CAMERA ON WHEN THEY 88 00:02:45,794 --> 00:02:48,297 ARE SPEAKING AND USE HAND RAISE 89 00:02:48,297 --> 00:02:50,632 FUNCTION DURING DISCUSSION. 90 00:02:50,632 --> 00:02:55,104 ALL CHAT COMMUNICATION WILL BE 91 00:02:55,104 --> 00:02:55,871 SAVED FOR THE RECORD OF THE 92 00:02:55,871 --> 00:02:56,205 COMMISSION. 93 00:02:56,205 --> 00:02:59,441 WITH THAT, IT IS MY GREAT 94 00:02:59,441 --> 00:03:04,279 PLEASURE TO PASS THE MA MIC TO 95 00:03:04,279 --> 00:03:05,014 MS. STEPHANIE DREYER CO-CHAIR 96 00:03:05,014 --> 00:03:06,315 FOR HER REMARKS. 97 00:03:06,315 --> 00:03:08,017 >> WELCOME, EVERYONE, TO THIS 98 00:03:08,017 --> 00:03:09,618 VERY IMPORTANT MEETING, WHICH 99 00:03:09,618 --> 00:03:11,020 REPRESENTS A SEMINAL ASPECT OF 100 00:03:11,020 --> 00:03:12,588 THE WORK OF THE NATIONAL 101 00:03:12,588 --> 00:03:13,655 COMMISSION. 102 00:03:13,655 --> 00:03:15,290 I WANT TO UNDERSCORE THE NOTION 103 00:03:15,290 --> 00:03:16,725 THAT THIS COMMISSION HAS BEEN 104 00:03:16,725 --> 00:03:18,794 DESIGNED TO SERVE THE NEEDS OF 105 00:03:18,794 --> 00:03:20,329 THE PEOPLE AND THE ORGANIZATIONS 106 00:03:20,329 --> 00:03:23,832 WHO ARE REPRESENTED HERE TODAY. 107 00:03:23,832 --> 00:03:25,267 IT'S VERY IMPORTANT FOR US TO 108 00:03:25,267 --> 00:03:26,201 HEAR THE VOICE OF PATIENTS WHO 109 00:03:26,201 --> 00:03:28,470 ARE AFFECTED BY LYMPHATIC 110 00:03:28,470 --> 00:03:30,172 DISEASE, AND THE ORGANIZATIONS 111 00:03:30,172 --> 00:03:31,740 WHO REPRESENT THEM. 112 00:03:31,740 --> 00:03:34,276 IN ADDITION TO A VARIETY OF 113 00:03:34,276 --> 00:03:35,544 OUTREACH EFFORTS TO THE 114 00:03:35,544 --> 00:03:37,212 COMMUNITY, TODAY IS THE SECOND 115 00:03:37,212 --> 00:03:38,614 OF TWO TOWN HALL MEETINGS. 116 00:03:38,614 --> 00:03:40,015 THE FIRST IN NOVEMBER 117 00:03:40,015 --> 00:03:44,953 SPECIFICALLY FOCUSED ON -- TODAY 118 00:03:44,953 --> 00:03:47,489 WE'RE FOCUSED ON 119 00:03:47,489 --> 00:03:48,357 LYMPHANGIOLEIOMYOMATOSIS AND 120 00:03:48,357 --> 00:03:50,559 LYMPHATIC VASCULAR AND COMPLEX 121 00:03:50,559 --> 00:03:52,161 VASCULAR MALFORMATIONS. 122 00:03:52,161 --> 00:03:54,196 THE FIRST TOWN HALL PROVED TO BE 123 00:03:54,196 --> 00:03:55,264 INCREDIBLY INSIGHTFUL, HELPING 124 00:03:55,264 --> 00:03:56,698 US TO UNDERSTAND PARTICULAR 125 00:03:56,698 --> 00:04:00,402 AREAS OF OUR WORK. 126 00:04:00,402 --> 00:04:00,636 PA POST 127 00:04:00,636 --> 00:04:01,103 SPECIFIC PROBLEMS OR 128 00:04:01,103 --> 00:04:02,171 OPPORTUNITIES FOR THE LYMPHATIC 129 00:04:02,171 --> 00:04:03,672 DISEASE COMMUNITY. 130 00:04:03,672 --> 00:04:05,841 TOPICS LIKE PREGNANCY 131 00:04:05,841 --> 00:04:07,109 EXPERIENCES, THE BURDEN OF 132 00:04:07,109 --> 00:04:09,044 MENTAL HEALTH CHALLENGES, AND 133 00:04:09,044 --> 00:04:11,180 EVEN THE ROLE OR POTENTIAL ROLE 134 00:04:11,180 --> 00:04:14,349 OF RNs OR NPPAs. 135 00:04:14,349 --> 00:04:16,885 WE'RE VERY GRATEFUL TO THE 136 00:04:16,885 --> 00:04:17,719 ORGANIZATIONS WHO HAVE PROVIDED 137 00:04:17,719 --> 00:04:19,388 THESE INSIGHTS, AND I'M FULLY 138 00:04:19,388 --> 00:04:20,389 CONFIDENT THAT TODAY'S SESSION 139 00:04:20,389 --> 00:04:22,157 WILL BE THOUGHT-PROVOKING AS 140 00:04:22,157 --> 00:04:25,160 WELL. 141 00:04:25,160 --> 00:04:26,161 SO WE'RE VERY DELIGHTED THAT 142 00:04:26,161 --> 00:04:27,196 YOU'RE HERE THIS MORNING TO 143 00:04:27,196 --> 00:04:29,131 SHARE YOUR STORIES WITH US, AND 144 00:04:29,131 --> 00:04:31,767 SO THAT YOUR PERSPECTIVES CAN BE 145 00:04:31,767 --> 00:04:32,868 INTEGRATED INTO ALL OF THE 146 00:04:32,868 --> 00:04:33,969 INFORMATION THAT WE'VE BEEN 147 00:04:33,969 --> 00:04:34,837 ACQUIRING DURING THE WORK OF 148 00:04:34,837 --> 00:04:36,138 THIS COMMISSION. 149 00:04:36,138 --> 00:04:37,706 IN ORDER TO PROVIDE OUR FINAL 150 00:04:37,706 --> 00:04:39,274 REPORT TO THE ADVISORY COUNCIL 151 00:04:39,274 --> 00:04:40,776 OF THE NATIONAL HEART, LUNG AND 152 00:04:40,776 --> 00:04:41,910 BLOOD INSTITUTE. 153 00:04:41,910 --> 00:04:43,245 THANK YOU SO MUCH FOR BEING 154 00:04:43,245 --> 00:04:44,680 HERE. 155 00:04:44,680 --> 00:04:46,615 WITH THAT, I WILL MOVE AHEAD TO 156 00:04:46,615 --> 00:04:48,650 TALK ABOUT THE NATIONAL 157 00:04:48,650 --> 00:04:49,418 COMMISSION, AND YOU CAN MOVE TO 158 00:04:49,418 --> 00:04:50,686 THE NEXT SLIDE. 159 00:04:50,686 --> 00:04:52,221 THIS IS BY WAY OF OVERVIEW TO 160 00:04:52,221 --> 00:04:53,789 HELP YOU UNDERSTAND THAT THIS IS 161 00:04:53,789 --> 00:04:57,559 A TRANSPARENT, INCLUSIVE, AND 162 00:04:57,559 --> 00:04:58,660 ACCESSIBLE PUBLIC FORUM TO 163 00:04:58,660 --> 00:05:01,163 ASSESS CRITICAL CHALLENGES, 164 00:05:01,163 --> 00:05:02,831 GATHER INPUT, AS WE ARE THIS 165 00:05:02,831 --> 00:05:03,999 MORNING FROM THE DIVERSE 166 00:05:03,999 --> 00:05:05,901 SPECTRUM OF STAKEHOLDERS TO 167 00:05:05,901 --> 00:05:07,436 IDENTIFY THE GAPS AND CHALLENGES 168 00:05:07,436 --> 00:05:09,204 THAT EXIST IN PROVIDING 169 00:05:09,204 --> 00:05:11,473 APPROPRIATE CARE, RESEARCH, AND 170 00:05:11,473 --> 00:05:13,075 INFRASTRUCTURE FOR THE LYMPHATIC 171 00:05:13,075 --> 00:05:14,343 DISEASE COMMUNITY. 172 00:05:14,343 --> 00:05:17,146 AND TO PROVIDE ACTIONABLE 173 00:05:17,146 --> 00:05:18,514 PROGRESS UPDATES AND OF COURSE A 174 00:05:18,514 --> 00:05:24,686 FINAL REPORT TO THE NHLBI 175 00:05:24,686 --> 00:05:25,787 ADVISORY COUNCIL. 176 00:05:25,787 --> 00:05:28,991 OUR COMMISSION IS COMPRISED OF 177 00:05:28,991 --> 00:05:29,825 15 COMMISSIONERS REPRESENTING A 178 00:05:29,825 --> 00:05:31,260 VARIETY OF BACKGROUNDS AND 179 00:05:31,260 --> 00:05:31,527 EXPERTISE. 180 00:05:31,527 --> 00:05:33,495 AND TO ENSURE APPROPRIATE FOCUS 181 00:05:33,495 --> 00:05:35,197 ON KEY AREAS OF NEED, WE'VE 182 00:05:35,197 --> 00:05:36,532 CREATED A NUMBER OF COMMITTEES 183 00:05:36,532 --> 00:05:38,567 THAT ARE DEVOTED TO ADDRESSING 184 00:05:38,567 --> 00:05:39,835 EACH OF THE INDIVIDUAL ELEMENTS 185 00:05:39,835 --> 00:05:41,603 THAT WE THINK ARE IMPORTANT IN 186 00:05:41,603 --> 00:05:44,773 UNDERSTANDING THE PROBLEM OF 187 00:05:44,773 --> 00:05:45,674 LYMPHATIC DISEASE AND ITS 188 00:05:45,674 --> 00:05:46,642 POTENTIAL SOLUTIONS. 189 00:05:46,642 --> 00:05:48,677 SO HERE YOU SEE THE COMMITTEES 190 00:05:48,677 --> 00:05:49,778 LISTED WITH RELEVANT MEMBERS OF 191 00:05:49,778 --> 00:05:50,579 THE COMMISSION THAT SERVE IN 192 00:05:50,579 --> 00:05:51,780 EACH OF THESE COMMITTEES. 193 00:05:51,780 --> 00:05:53,515 AS YOU CAN SEE, WE HAVE A 194 00:05:53,515 --> 00:05:54,917 SCIENTIFIC COMMITTEE, 195 00:05:54,917 --> 00:05:56,251 EDUCATIONAL IMPERATIVES, 196 00:05:56,251 --> 00:05:58,554 MEASURABLE RESULTS, PATIENT 197 00:05:58,554 --> 00:06:00,322 TOOLS, THIRD PARTY COVERAGE, AND 198 00:06:00,322 --> 00:06:03,992 OF COURSE, COMMUNITY GROWTH. 199 00:06:03,992 --> 00:06:05,360 SO WITH THAT, I'LL TURN IT BACK 200 00:06:05,360 --> 00:06:07,963 TO SELEN TO INTRODUCE OUR 201 00:06:07,963 --> 00:06:09,298 STAKEHOLDERS WITH US TODAY 202 00:06:09,298 --> 00:06:11,166 REPRESENTING EVEN MORE DIVERSE 203 00:06:11,166 --> 00:06:11,633 PERSPECTIVES. 204 00:06:11,633 --> 00:06:13,268 THANK YOU AGAIN FOR BEING HERE. 205 00:06:13,268 --> 00:06:16,572 SELEN, OVER TO YOU. 206 00:06:16,572 --> 00:06:18,874 >> THANK YOU, STEPH, FOR THAT 207 00:06:18,874 --> 00:06:19,641 GREAT WELCOME REMARKS. 208 00:06:19,641 --> 00:06:21,977 WE ARE GOING TO START WITH OUR 209 00:06:21,977 --> 00:06:23,745 FIRST PRESENTATION BY DR. DENISE 210 00:06:23,745 --> 00:06:24,112 ADAMS. 211 00:06:24,112 --> 00:06:27,816 SHE IS A MEMBER OF THE MEDICAL 212 00:06:27,816 --> 00:06:31,186 ADVISORY BOARD OF FAVA, 213 00:06:31,186 --> 00:06:32,921 FIBRO-ADIPOSE VASCULAR ANOMALY. 214 00:06:32,921 --> 00:06:34,256 I'M GOING TO PASS THE MIC TO 215 00:06:34,256 --> 00:06:37,326 DENISE. 216 00:06:37,326 --> 00:06:38,060 >> THANK YOU VERY MUCH. 217 00:06:38,060 --> 00:06:39,494 IT'S A REAL HONOR TO BE HERE TO 218 00:06:39,494 --> 00:06:40,362 DISCUSS THIS TOPIC WITH YOU. 219 00:06:40,362 --> 00:06:47,903 IF YOU GO TO MY FIRST SLIDE. 220 00:06:47,903 --> 00:06:49,504 THIS TELLS YOU WHO I AM, BUT WHO 221 00:06:49,504 --> 00:06:52,007 I REALLY AM IS, I'M A PEDIATRIC 222 00:06:52,007 --> 00:06:53,508 ONCOLOGIST THAT'S BEEN DOING AND 223 00:06:53,508 --> 00:06:55,777 TAKING CARE OF PATIENTS WITH 224 00:06:55,777 --> 00:06:57,246 VASCULAR ANOMALIES FOR 25 YEARS, 225 00:06:57,246 --> 00:06:58,647 SO I'M REALLY -- I CONSIDER 226 00:06:58,647 --> 00:07:03,752 MYSELF A VASCULAR ANOMALIST. 227 00:07:03,752 --> 00:07:06,688 AND A VASCULAR ANOMALIST HAS TO 228 00:07:06,688 --> 00:07:09,091 TAKE CARE OF PATIENTS THAT HAVE 229 00:07:09,091 --> 00:07:11,627 NOT ONLY TUMORS BUT ALSO 230 00:07:11,627 --> 00:07:14,229 MALFORMATIONS. 231 00:07:14,229 --> 00:07:15,597 THE TUMORS THAT WE TAKE CARE OF 232 00:07:15,597 --> 00:07:18,400 CAN BE BENIGN TUMORS, THEY CAN 233 00:07:18,400 --> 00:07:25,173 BE MALIGNANT TUMORS. 234 00:07:25,173 --> 00:07:27,142 AND THEY CAN ALSO BE MALIGNANT 235 00:07:27,142 --> 00:07:34,049 TUMORS. 236 00:07:34,049 --> 00:07:35,584 WE ALSO TAKE CARE OF 237 00:07:35,584 --> 00:07:36,985 MALFORMATIONS AND IF YOU KEEP 238 00:07:36,985 --> 00:07:38,120 ADVANCING UNTIL THE PICTURES ARE 239 00:07:38,120 --> 00:07:40,489 DONE, THAT WOULD BE GREAT. 240 00:07:40,489 --> 00:07:41,790 AND WE TAKE CARE OF ALL 241 00:07:41,790 --> 00:07:43,458 DIFFERENT KINDS OF VASCULAR 242 00:07:43,458 --> 00:07:43,859 ANOMALIES. 243 00:07:43,859 --> 00:07:45,627 WE TAKE CARE OF VENOUS AND 244 00:07:45,627 --> 00:07:47,796 VENOUS LYMPHATIC, LYMPHATIC, AND 245 00:07:47,796 --> 00:07:54,503 ALSO CAPILLARY. 246 00:07:54,503 --> 00:07:58,407 WE ALSO TAKE CARE OF COMPLEX 247 00:07:58,407 --> 00:07:59,508 PROBLEMS AND COMPLEX PROBLEMS 248 00:07:59,508 --> 00:08:04,212 ARE COMBINED LESIONS SUCH AS 249 00:08:04,212 --> 00:08:07,716 CLOVES, FAVA, WHICH IS 250 00:08:07,716 --> 00:08:10,852 FIBRO-ADIPOSE VASCULAR ANOMALY. 251 00:08:10,852 --> 00:08:12,854 SO THE SIGNIFICANT CHALLENGES 252 00:08:12,854 --> 00:08:15,691 THAT WE SEE THAT PEOPLE HAVE 253 00:08:15,691 --> 00:08:18,760 ARE, NUMBER ONE, AWARENESS. 254 00:08:18,760 --> 00:08:21,697 AWARENESS AS FAR AS OUR 255 00:08:21,697 --> 00:08:27,302 PATIENTS, OUR SCHOOLS, OUR LOCAL 256 00:08:27,302 --> 00:08:31,973 INSTITUTIONS, OUR INTERNATIONAL 257 00:08:31,973 --> 00:08:38,246 INSTITUTIONS, HO OUR NIH, THE F. 258 00:08:38,246 --> 00:08:39,214 WE ALSO HAVE A CHALLENGE WITH 259 00:08:39,214 --> 00:08:40,015 EDUCATION. 260 00:08:40,015 --> 00:08:41,450 WE DON'T LEARN THIS IN MEDICAL 261 00:08:41,450 --> 00:08:42,718 SCHOOL, AND WE STILL DON'T LEARN 262 00:08:42,718 --> 00:08:44,920 THIS IN MEDICAL SCHOOL. 263 00:08:44,920 --> 00:08:46,421 WE ALSO KNOW, AND YOU CAN SEE 264 00:08:46,421 --> 00:08:47,322 FROM LOOKING AT THE PICTURES, 265 00:08:47,322 --> 00:08:49,825 THAT THERE'S A HETEROGENEITY, SO 266 00:08:49,825 --> 00:08:51,126 NOT ONE PATIENT FITS INTO A 267 00:08:51,126 --> 00:08:52,427 PERFECT BOX. 268 00:08:52,427 --> 00:08:54,329 AND THAT IS EVEN IF THE PATIENT 269 00:08:54,329 --> 00:08:58,500 HAS THE SAME DIAGNOSIS AND THE 270 00:08:58,500 --> 00:08:59,000 SAME GENOTYPE. 271 00:08:59,000 --> 00:09:00,535 WE HAVE LACK OF STANDARDS OF 272 00:09:00,535 --> 00:09:02,838 PRACTICE BECAUSE OF THIS 273 00:09:02,838 --> 00:09:03,305 HETEROGENEITY. 274 00:09:03,305 --> 00:09:05,574 THERE'S LACK OF ACCESS TO CARE, 275 00:09:05,574 --> 00:09:07,109 SO SOME PEOPLE CAN HAVE MEDICAL 276 00:09:07,109 --> 00:09:08,543 CARE BUT THEY CAN'T FIND 277 00:09:08,543 --> 00:09:10,178 SURGICAL AND RADIOLOGIC CARE. 278 00:09:10,178 --> 00:09:12,481 AND YOU CAN SEE FROM THIS MAP, 279 00:09:12,481 --> 00:09:14,349 THIS AT THE TOP IS A MAP OF THE 280 00:09:14,349 --> 00:09:15,517 UNITED STATES AND ALL THE 281 00:09:15,517 --> 00:09:17,452 PEDIATRIC HOSPITALS. 282 00:09:17,452 --> 00:09:19,254 THE SECOND MAP IS A MAP OF ALL 283 00:09:19,254 --> 00:09:20,822 THE HOSPITALS THAT SAY THAT THEY 284 00:09:20,822 --> 00:09:23,158 TAKE CARE OF VASCULAR ANOMALIES, 285 00:09:23,158 --> 00:09:26,294 AND THE THIRD IS A MAP OF THE 286 00:09:26,294 --> 00:09:30,298 PLACES THAT ONLY HAVE 287 00:09:30,298 --> 00:09:31,933 MULTIDISCIPLINARY SPECIALTIES 288 00:09:31,933 --> 00:09:33,735 AND MULTIDISCIPLINARY CLINICS. 289 00:09:33,735 --> 00:09:35,637 AND YOU SEE THERE'S A VAST 290 00:09:35,637 --> 00:09:38,607 DEFICIENCY OF WHERE THOSE ARE. 291 00:09:38,607 --> 00:09:40,842 WE LACK ACCESS TO NOT ONLY 292 00:09:40,842 --> 00:09:42,878 REGULAR CARE BUT ALSO INNOVATIVE 293 00:09:42,878 --> 00:09:43,211 CARE. 294 00:09:43,211 --> 00:09:44,646 PEOPLE HAVE TO COME ACROSS THE 295 00:09:44,646 --> 00:09:46,915 COUNTRY TO GET INNOVATIVE CARE 296 00:09:46,915 --> 00:09:48,350 SUCH AS MRLs. 297 00:09:48,350 --> 00:09:51,119 WE LACK TRANSITION OF CARE FOR 298 00:09:51,119 --> 00:09:52,154 ADULTS, WE LACK PSYCHOLOGICAL 299 00:09:52,154 --> 00:09:55,323 AND SOCIAL SUPPORT, WE LACK 300 00:09:55,323 --> 00:09:57,125 LONG-TERM DATA FOR OUR 301 00:09:57,125 --> 00:09:58,627 DIAGNOSES, SUCH AS NATURAL 302 00:09:58,627 --> 00:10:00,595 HISTORY, SIDE EFFECTS AND 303 00:10:00,595 --> 00:10:01,263 MEDICATIONS. 304 00:10:01,263 --> 00:10:03,632 THERE'S A LACK OF RESEARCH. 305 00:10:03,632 --> 00:10:04,733 WE'RE WAY BEHIND CANCER. 306 00:10:04,733 --> 00:10:06,735 AND IT'S FRUSTRATING AS I AM A 307 00:10:06,735 --> 00:10:08,904 PEDIATRIC ONCOLOGIST. 308 00:10:08,904 --> 00:10:11,206 THE LACK OF UNDERSTANDING OF 309 00:10:11,206 --> 00:10:13,175 SYMPTOMATOLOGY IS CRITICAL, 310 00:10:13,175 --> 00:10:14,309 SPECIFICALLY PAIN, AND THERE IS 311 00:10:14,309 --> 00:10:22,651 NO CURE. 312 00:10:22,651 --> 00:10:24,319 SO OUR CHALLENGES, AND IF YOU GO 313 00:10:24,319 --> 00:10:28,390 TO THE NEXT SLIDE, OUR RESOURCE 314 00:10:28,390 --> 00:10:29,791 CHALLENGES HAVE TO DO WITH THE 315 00:10:29,791 --> 00:10:31,193 OTHER CHALLENGES. 316 00:10:31,193 --> 00:10:34,963 SO OUR PATIENT ARE STRUGGLING TO 317 00:10:34,963 --> 00:10:36,498 OBTAIN CARE, WHETHER IT BE 318 00:10:36,498 --> 00:10:38,567 LOCALLY OR WHETHER IT BE ACROSS 319 00:10:38,567 --> 00:10:40,001 THE COUNTRY. 320 00:10:40,001 --> 00:10:42,871 OR EVEN IN OTHER COUNTRIES. 321 00:10:42,871 --> 00:10:44,439 IT'S REALLY A SHAME THAT WE HAVE 322 00:10:44,439 --> 00:10:46,107 PEOPLE THAT COME TO US FROM 323 00:10:46,107 --> 00:10:47,776 OTHER COUNTRIES SEEKING CARE, 324 00:10:47,776 --> 00:10:49,711 AND WE'VE BEEN TRYING TO GET OUT 325 00:10:49,711 --> 00:10:52,981 THERE AND TO EDUCATE PEOPLE. 326 00:10:52,981 --> 00:10:55,650 WE HAVE RESOURCES FOR NEW 327 00:10:55,650 --> 00:10:57,185 MEDICATIONS AND INNOVATIVE 328 00:10:57,185 --> 00:10:58,587 PROCEDURES, BUT IT'S HARD TO GET 329 00:10:58,587 --> 00:11:00,789 TO THOSE AREAS. 330 00:11:00,789 --> 00:11:02,824 WE HAVE CHALLENGES ENTERING A 331 00:11:02,824 --> 00:11:04,226 RESEARCH TRIAL AND CHALLENGES 332 00:11:04,226 --> 00:11:06,495 FINDING A RESEARCH TRIAL. 333 00:11:06,495 --> 00:11:08,997 ONE OF OUR MEDICINES CAN CAUSE 334 00:11:08,997 --> 00:11:10,632 $32,000 A MONTH, AND THAT MEANS 335 00:11:10,632 --> 00:11:12,200 IF IT'S COVERED BY INSURANCE, 336 00:11:12,200 --> 00:11:13,768 THEY HAVE TO -- SOME PEOPLE HAVE 337 00:11:13,768 --> 00:11:17,506 TO PAY OUT OF POCKET 1,000 TO 338 00:11:17,506 --> 00:11:18,773 $8,000 A MONTH, AND THAT IS NOT 339 00:11:18,773 --> 00:11:23,178 POSSIBLE. 340 00:11:23,178 --> 00:11:26,915 SO MY WISHES ARE, AND OUR WISHES 341 00:11:26,915 --> 00:11:27,782 ARE, IN THE FUTURE, THERE WILL 342 00:11:27,782 --> 00:11:30,252 BE ADULT AND PEDIATRIC 343 00:11:30,252 --> 00:11:31,052 PRACTITIONERS AND CENTERS 344 00:11:31,052 --> 00:11:33,555 AVAILABLE TO ALL WITH EXPERTISE 345 00:11:33,555 --> 00:11:35,857 IN VASCULAR ANOMALIES THAT 346 00:11:35,857 --> 00:11:37,526 PROVIDE SAFE CARE, THAT IS 347 00:11:37,526 --> 00:11:39,227 STANDARD OF CARE FOR PATIENTS. 348 00:11:39,227 --> 00:11:41,229 THAT WE WILL HAVE FUNDING FOR 349 00:11:41,229 --> 00:11:42,864 STUDIES RELATED TO NATURAL 350 00:11:42,864 --> 00:11:45,166 HISTORY, INNOVATIVE END POINTS, 351 00:11:45,166 --> 00:11:47,335 CLINICAL BENEFIT RESPONSE, 352 00:11:47,335 --> 00:11:48,270 BIOMARKERS, NEW MEDICATIONS THAT 353 00:11:48,270 --> 00:11:50,639 WILL IMPROVE THE OUTCOMES FOR 354 00:11:50,639 --> 00:11:51,973 OUR PATIENTS. 355 00:11:51,973 --> 00:11:53,375 AND OUR GOAL NOW IS TO FIND A 356 00:11:53,375 --> 00:11:55,176 CURE. 357 00:11:55,176 --> 00:11:57,012 SO I'M GOING TO INTRODUCE TWO 358 00:11:57,012 --> 00:11:57,512 PATIENTS. 359 00:11:57,512 --> 00:12:02,017 THE FIRST ONE WILL BE A PATIENT 360 00:12:02,017 --> 00:12:10,091 WITH FAVA, VALEN WINTHROP. 361 00:12:10,091 --> 00:12:10,625 >> HI. 362 00:12:10,625 --> 00:12:13,061 I'M BALIN WEINTRAUB. 363 00:12:13,061 --> 00:12:14,062 FIRST THANK YOU TO THE 364 00:12:14,062 --> 00:12:15,664 COMMISSION FOR LETTING ME 365 00:12:15,664 --> 00:12:16,531 PARTICIPATE TODAY. 366 00:12:16,531 --> 00:12:22,871 I'M HERE ON BEHALF OF FAVA, A 367 00:12:22,871 --> 00:12:24,506 NON-PROFIT ADVOCACY GROUP. 368 00:12:24,506 --> 00:12:25,974 FAVA IS A CONDITION IN WHICH 369 00:12:25,974 --> 00:12:28,376 PAINFUL LESIONS BEGIN TO ILL 370 00:12:28,376 --> 00:12:29,444 FILTRATE MUSCLE TISSUE AS WELL 371 00:12:29,444 --> 00:12:31,413 AS OFTEN ILL FIN TRAIT THING THE 372 00:12:31,413 --> 00:12:33,081 BLOOD VESSELS, TENDONS AND 373 00:12:33,081 --> 00:12:33,882 NERVES. 374 00:12:33,882 --> 00:12:36,017 IT USUALLY OCCURS IN A PERSON'S 375 00:12:36,017 --> 00:12:36,217 LIMBS. 376 00:12:36,217 --> 00:12:38,286 WHEN I WAS 8 YEARS OLD I 377 00:12:38,286 --> 00:12:39,321 SUNDAYLY BEGAN EXPERIENCING 378 00:12:39,321 --> 00:12:40,221 UNRELENTING PAIN IN MY RIGHT 379 00:12:40,221 --> 00:12:42,190 FOOT, SO MY FAMILY BEGAN A 380 00:12:42,190 --> 00:12:43,391 YEAR-LONG JOURNEY SEARCHING FOR 381 00:12:43,391 --> 00:12:45,193 A DIAGNOSIS. 382 00:12:45,193 --> 00:12:46,194 THE PAIN BECAME PERMANENT IN MY 383 00:12:46,194 --> 00:12:48,296 LIFE AND I WAS A CASE THAT FEW 384 00:12:48,296 --> 00:12:49,564 COULD SOLVE. 385 00:12:49,564 --> 00:12:51,733 AFTER 13 DOCTORS VISITS ACROSS 386 00:12:51,733 --> 00:12:53,935 FOUR DIFFERENT STATES, FOUR OR 387 00:12:53,935 --> 00:12:55,437 FIVE MISDIAGNOSES AND HAVING 388 00:12:55,437 --> 00:12:56,738 THREE PROCEDURES DONE, I FINALLY 389 00:12:56,738 --> 00:12:58,573 GOT MY DIAGNOSIS. 390 00:12:58,573 --> 00:12:59,741 UNFORTUNATELY, THERE WAS ONLY 391 00:12:59,741 --> 00:13:00,241 ONE MEDICATION THAT WAS 392 00:13:00,241 --> 00:13:01,843 AVAILABLE TO ME, AND IT WAS OFF 393 00:13:01,843 --> 00:13:03,078 LABEL AND NOT GUARANTEED TO 394 00:13:03,078 --> 00:13:03,878 WORK. 395 00:13:03,878 --> 00:13:05,213 I'VE BEEN TAKING THAT MEDICATION 396 00:13:05,213 --> 00:13:06,414 FOR YEARS, AND WHILE IT WORKED 397 00:13:06,414 --> 00:13:08,516 AT THE BEGINNING, ITS 398 00:13:08,516 --> 00:13:09,851 EFFECTIVENESS HAS DECREASED OVER 399 00:13:09,851 --> 00:13:10,885 TIME AND I'VE HAD TO SUFFER 400 00:13:10,885 --> 00:13:13,888 THROUGH THE PAINFUL SIDE EFFECT 401 00:13:13,888 --> 00:13:14,489 THE ENTIRE TIME. 402 00:13:14,489 --> 00:13:16,191 MORE RECENTLY, A NEW MEDICATION 403 00:13:16,191 --> 00:13:17,359 HAS BECOME AVAILABLE BUT MUCH 404 00:13:17,359 --> 00:13:18,560 LESS IS KNOWN ABOUT IT. 405 00:13:18,560 --> 00:13:20,161 AND THAT MAKES ME SCARED BECAUSE 406 00:13:20,161 --> 00:13:21,830 I REALLY DON'T WANT TO BE THE 407 00:13:21,830 --> 00:13:23,264 GUINEA PIG. 408 00:13:23,264 --> 00:13:24,766 ADDITIONALLY, MANY INSURANCE 409 00:13:24,766 --> 00:13:25,967 COMPANIES REFUSE TO COVER THIS 410 00:13:25,967 --> 00:13:27,902 NEW DRUG WITHOUT A CONFIRMED 411 00:13:27,902 --> 00:13:28,803 MUTATION, AND THAT, TOO, HAS 412 00:13:28,803 --> 00:13:30,472 BEEN A JOURNEY FOR ME. 413 00:13:30,472 --> 00:13:32,007 BECAUSE I HAVE A SOMATIC 414 00:13:32,007 --> 00:13:33,241 MUTATION AND THE RESEARCH ISN'T 415 00:13:33,241 --> 00:13:35,310 WHERE IT NEEDS TO BE, MY TISSUE 416 00:13:35,310 --> 00:13:37,245 NOW HAS RECEIVED THREE 417 00:13:37,245 --> 00:13:38,380 INCONCLUSIVE RESULTS AND I'M 418 00:13:38,380 --> 00:13:40,849 CURRENTLY WA WAITING FOR RESULTS 419 00:13:40,849 --> 00:13:41,983 FROM TWO MORE VASCULAR ANOMALY 420 00:13:41,983 --> 00:13:43,051 CENTERS FOLLOWING A BIOPSY THAT 421 00:13:43,051 --> 00:13:44,352 I HAD DONE MONTHS AGO. 422 00:13:44,352 --> 00:13:46,688 IN THE MEANTIME, MY LIFE LOOKS A 423 00:13:46,688 --> 00:13:47,689 LOT DIFFERENT THAN MOST 424 00:13:47,689 --> 00:13:48,223 TEENAGERS. 425 00:13:48,223 --> 00:13:49,991 I PLAY COMPETITIVE SOCCER BUT I 426 00:13:49,991 --> 00:13:51,593 SUFFER IN PAIN AFTER EVERY 427 00:13:51,593 --> 00:13:52,727 SINGLE PRACTICE AND GAME. 428 00:13:52,727 --> 00:13:54,095 I HAVE TO WEAR TWO DIFFERENT 429 00:13:54,095 --> 00:13:55,730 SHOES TO ACCOMMODATE MY FAVA 430 00:13:55,730 --> 00:13:57,232 FOOT AND I CONVINCE EVERYONE AT 431 00:13:57,232 --> 00:13:58,733 SCHOOL THAT IT'S JUST A PART OF 432 00:13:58,733 --> 00:14:00,135 MY FASHION STATEMENT. 433 00:14:00,135 --> 00:14:01,903 DURING THAT FLARE-UPS, IT'S 434 00:14:01,903 --> 00:14:03,905 NEARLY IMPOSSIBLE TO FALL 435 00:14:03,905 --> 00:14:05,006 ASLEEP, CONCENTRATE AT SCHOOL OR 436 00:14:05,006 --> 00:14:05,206 WALK. 437 00:14:05,206 --> 00:14:07,676 I GO THROUGH BOTTLES OF ORAGEL 438 00:14:07,676 --> 00:14:09,644 TO TREAT THE MOUTH ULCERS CAUSED 439 00:14:09,644 --> 00:14:11,713 BY MY MEDICATIONS AI KNOW MORE 440 00:14:11,713 --> 00:14:14,416 ABOUT FAVA THAN ALMOST ANY 441 00:14:14,416 --> 00:14:15,316 DOCTOR IN MY COUNTY. 442 00:14:15,316 --> 00:14:18,119 I TRAVEL ALMOST 3,000 MILES FOR 443 00:14:18,119 --> 00:14:19,421 MY YEARLY DOCTOR APPOINTMENTS 444 00:14:19,421 --> 00:14:20,889 WITH A FAVA EXPERT AND I HAVE TO 445 00:14:20,889 --> 00:14:22,323 SHOW MY FLEXIBILITY BY BENDING 446 00:14:22,323 --> 00:14:24,225 MY FOOT UP TO MY COMPUTER CAMERA 447 00:14:24,225 --> 00:14:25,827 FOR OUR QUARTERLY VIRTUAL 448 00:14:25,827 --> 00:14:26,261 VISITS. 449 00:14:26,261 --> 00:14:28,930 BUT MY STORY IS NOT UNIQUE. 450 00:14:28,930 --> 00:14:30,532 MANY PEOPLE LIVING WITH FAVA 451 00:14:30,532 --> 00:14:32,634 SUFFERING LIKE ME ARE ANXIOUSLY 452 00:14:32,634 --> 00:14:34,069 WAITING FOR FUTURE TREATMENTS TO 453 00:14:34,069 --> 00:14:35,270 IMPROVE OUR LIVES. 454 00:14:35,270 --> 00:14:36,738 THERE ARE BRILLIANT DOCTORS AND 455 00:14:36,738 --> 00:14:38,506 RESEARCHERS OUT THERE WHO FIGHT 456 00:14:38,506 --> 00:14:39,507 TIRELESSLY EVERY DAY FOR MY 457 00:14:39,507 --> 00:14:40,742 COMMUNITY, BUT THEY NEED FUNDING 458 00:14:40,742 --> 00:14:41,910 FOR RESEARCH. 459 00:14:41,910 --> 00:14:43,178 I SINCERELY THANK THE COMMISSION 460 00:14:43,178 --> 00:14:44,879 FOR LISTENING TO OUR CALLS FOR 461 00:14:44,879 --> 00:14:46,281 HELP AND FOR ALLOWING OUR 462 00:14:46,281 --> 00:14:48,183 COMMUNITY TO BELIEVE IN A 463 00:14:48,183 --> 00:14:48,683 BRIGHTER FUTURE. 464 00:14:48,683 --> 00:14:50,585 THANK YOU AND I'LL TURN IT OVER 465 00:14:50,585 --> 00:14:54,489 TO CAT. 466 00:14:54,489 --> 00:14:56,357 >> GOOD MORNING. 467 00:14:56,357 --> 00:14:58,159 I JUST WANT TO SAY THANK YOU FOR 468 00:14:58,159 --> 00:14:59,661 LETTING ME BE HERE. 469 00:14:59,661 --> 00:15:03,498 I AM A PATIENT THAT HAS VASCULAR 470 00:15:03,498 --> 00:15:05,700 LYMPHATIC AND CAPILLARY 471 00:15:05,700 --> 00:15:07,368 INVOLVEMENT, AND I AM AN ADULT 472 00:15:07,368 --> 00:15:10,772 ANDIN A PEDIATRIC WORLD AND THAT 473 00:15:10,772 --> 00:15:11,873 DOES NOT WORK VERY WELL. 474 00:15:11,873 --> 00:15:13,508 I'M VERY FORTUNATE WHERE I LIVE 475 00:15:13,508 --> 00:15:16,377 THAT MY PCP HAS TAKEN ON MY CASE 476 00:15:16,377 --> 00:15:19,280 AND SHE'S ABLE TO BRIDGE THE GAP 477 00:15:19,280 --> 00:15:21,483 BETWEEN MY PEDIATRIC DOCTORS AND 478 00:15:21,483 --> 00:15:24,085 MY ADULT PHYSICIANS, BUT MY 479 00:15:24,085 --> 00:15:25,553 BIGGEST WISH IS THAT WE WOULD 480 00:15:25,553 --> 00:15:28,523 HAVE ADULT HEALTHCARE. 481 00:15:28,523 --> 00:15:29,357 EDUCATION IS IMPORTANT. 482 00:15:29,357 --> 00:15:32,227 I GO TO AN E.R. AND NO ONE 483 00:15:32,227 --> 00:15:33,528 REALLY UNDERSTANDS WHAT I HAVE 484 00:15:33,528 --> 00:15:35,263 AND, AGAIN, LIKE HE SAID, I'M 485 00:15:35,263 --> 00:15:36,998 THE EDUCATED ONE IN THE ROOM, 486 00:15:36,998 --> 00:15:40,869 AND WHEN YOU'RE BATTLING 487 00:15:40,869 --> 00:15:42,237 CELLULITIS OR A BLOOD CLOT, IT'S 488 00:15:42,237 --> 00:15:44,038 VERY HARD TO STAY IN A RIGHT 489 00:15:44,038 --> 00:15:46,241 FRAME OF MIND, ADVOCATE FOR 490 00:15:46,241 --> 00:15:47,509 YOURSELF, SO THAT YOU KNOW WHAT 491 00:15:47,509 --> 00:15:49,611 THEY'RE DOING AND BE SICK AT THE 492 00:15:49,611 --> 00:15:50,578 SAME TIME. 493 00:15:50,578 --> 00:15:52,347 IT MAKES FOR VERY COMPLICATED 494 00:15:52,347 --> 00:15:52,680 WORLD. 495 00:15:52,680 --> 00:15:55,650 I GREW UP IN A REGION WHERE THEY 496 00:15:55,650 --> 00:15:57,018 DIDN'T HAVE A LOT OF 497 00:15:57,018 --> 00:15:57,485 INFORMATION. 498 00:15:57,485 --> 00:16:00,021 I'M IN MY 40s, SO I WASN'T 499 00:16:00,021 --> 00:16:02,624 DIAGNOSED UNTIL I WAS 22, AND I 500 00:16:02,624 --> 00:16:04,826 WASN'T ACTUALLY TREATED UNTIL I 501 00:16:04,826 --> 00:16:06,127 WAS 32. 502 00:16:06,127 --> 00:16:09,097 I AM ON A RESEARCH DRUG THAT 503 00:16:09,097 --> 00:16:10,498 COMPLETELY CHANGED MY LIFE. 504 00:16:10,498 --> 00:16:12,867 I WENT FROM VIRTUALLY NOT 505 00:16:12,867 --> 00:16:15,236 WALKING AT ALL TO I WALKED IN A 506 00:16:15,236 --> 00:16:18,039 MARATHON. 507 00:16:18,039 --> 00:16:20,775 BUT IT WASN'T WITHOUT MY 508 00:16:20,775 --> 00:16:22,377 COMMUNITY AND DR. ADAMS AND A 509 00:16:22,377 --> 00:16:24,813 FEW OTHER DOCTORS THAT MADE THIS 510 00:16:24,813 --> 00:16:26,614 POSSIBLE. 511 00:16:26,614 --> 00:16:27,782 THEY NEED SUPPORT. 512 00:16:27,782 --> 00:16:31,386 WE NEED HELP BECAUSE THAT'S THE 513 00:16:31,386 --> 00:16:32,387 ONLY WAY THIS IS GOING TO 514 00:16:32,387 --> 00:16:33,021 CHANGE. 515 00:16:33,021 --> 00:16:34,656 WE NEED A LANGUAGE AND A 516 00:16:34,656 --> 00:16:35,523 COMMUNICATION BETWEEN PATIENT 517 00:16:35,523 --> 00:16:36,558 AND DOCTOR TO MAKE THIS 518 00:16:36,558 --> 00:16:38,193 POSSIBLE. 519 00:16:38,193 --> 00:16:41,896 THAT'S ALL. 520 00:16:41,896 --> 00:16:45,934 >> THANK YOU VERY MUCH FOR THIS 521 00:16:45,934 --> 00:16:48,703 VERY POWERFUL START. 522 00:16:48,703 --> 00:16:50,338 WE ARE GLAD YOU BOTH CAME HERE 523 00:16:50,338 --> 00:16:53,241 AND SHARED YOUR EXPERIENCES WITH 524 00:16:53,241 --> 00:16:53,808 US. 525 00:16:53,808 --> 00:16:57,779 AND WE WILL BE TALKING MORE 526 00:16:57,779 --> 00:16:59,414 ABOUT IT AT THE END OF THE 527 00:16:59,414 --> 00:16:59,848 PRESENTATIONS. 528 00:16:59,848 --> 00:17:02,817 WITH THAT, NEXT PRESENTER IS 529 00:17:02,817 --> 00:17:06,287 KAREN BALL, FOUNDER AND CHIEF 530 00:17:06,287 --> 00:17:09,224 EXECUTIVE OFFICER OF 531 00:17:09,224 --> 00:17:09,791 STURGE-WEBER FOUNDATION. 532 00:17:09,791 --> 00:17:19,901 KAREN? 533 00:17:20,902 --> 00:17:24,172 KAREN, CAN YOU UNMUTE AND ALSO 534 00:17:24,172 --> 00:17:34,482 PUT YOUR VIDEO ON? 535 00:17:36,351 --> 00:17:37,418 ALL RIGHT. 536 00:17:37,418 --> 00:17:40,088 LOOKS LIKE WE MIGHT HAVE LOST 537 00:17:40,088 --> 00:17:40,622 KAREN. 538 00:17:40,622 --> 00:17:41,623 SORRY ABOUT THAT. 539 00:17:41,623 --> 00:17:48,196 WE CAN GET BACK TO THE 540 00:17:48,196 --> 00:17:48,830 STURGE-WEBER FOUNDATION AT THE 541 00:17:48,830 --> 00:17:49,364 END OF THE PRESENTATION. 542 00:17:49,364 --> 00:17:51,633 SO WE WILL MOVE ON TO THE NEXT 543 00:17:51,633 --> 00:17:54,235 PRESENTATION, LAUREN BEUREGARD. 544 00:17:54,235 --> 00:17:58,339 SHE'S THE EXECUTIVE DIRECTOR OF 545 00:17:58,339 --> 00:18:01,876 CLOVES SYNDROME COMMUNITY. 546 00:18:01,876 --> 00:18:07,615 LAUREN? 547 00:18:07,615 --> 00:18:10,785 >> WORKING POWERPOINT ON THE 548 00:18:10,785 --> 00:18:11,085 FLY. 549 00:18:11,085 --> 00:18:11,686 THERE WE GO. 550 00:18:11,686 --> 00:18:12,320 THAT'S THE BEGINNING. 551 00:18:12,320 --> 00:18:14,088 ALL RIGHT. 552 00:18:14,088 --> 00:18:14,589 HI, EVERYBODY. 553 00:18:14,589 --> 00:18:16,291 MY NAME IS LAUREN BEAUREGARD. 554 00:18:16,291 --> 00:18:18,426 I'M THE EXECUTIVE DIRECTOR OF 555 00:18:18,426 --> 00:18:19,494 CLOVES SYNDROME COMMUNITY. 556 00:18:19,494 --> 00:18:23,064 WE ARE A TINY AND MIGHTY PATIENT 557 00:18:23,064 --> 00:18:24,432 ADVOCACY ORGANIZATION 558 00:18:24,432 --> 00:18:25,133 REPRESENTING AN ULTRA-RARE 559 00:18:25,133 --> 00:18:26,534 CONDITION CALLED CLOVES 560 00:18:26,534 --> 00:18:29,037 SYNDROME, WHICH IS A MULTISYSTEM 561 00:18:29,037 --> 00:18:30,672 PROGRESSIVE CONDITION CAUSED BY 562 00:18:30,672 --> 00:18:34,642 GAIN OF FUNCTION MUTATION IN THE 563 00:18:34,642 --> 00:18:35,576 PIC3C8 GENE WHICH IS WHY IT 564 00:18:35,576 --> 00:18:36,778 FALLS YOU UNDERSTAND THE 565 00:18:36,778 --> 00:18:41,749 UMBRELLA OF CONDITIONS CALLED 566 00:18:41,749 --> 00:18:48,656 P ICC3 RELATED SPECTRUM. 567 00:18:48,656 --> 00:18:50,158 WE WERE FOUNDED IN 2009 BY 568 00:18:50,158 --> 00:18:51,225 KRISTEN DAVIS, WHOSE DAUGHTER 569 00:18:51,225 --> 00:18:52,160 WAS ONE OF THE FIRST TO BE 570 00:18:52,160 --> 00:18:53,294 DIAGNOSED WITH THE CONDITION. 571 00:18:53,294 --> 00:18:56,798 IN 2020, WE RECEIVED A GRANT 572 00:18:56,798 --> 00:19:02,337 THROUGH THE CHAN SUCK ZUCKERBERG 573 00:19:02,337 --> 00:19:03,104 INSTITUTE. 574 00:19:03,104 --> 00:19:04,572 WHICH ALLOWED US TO CHAMPION 575 00:19:04,572 --> 00:19:07,141 RESEARCH INTO MECHANISMS BEHIND 576 00:19:07,141 --> 00:19:07,742 PROS. 577 00:19:07,742 --> 00:19:09,577 THAT RESEARCH CONTINUES TO 578 00:19:09,577 --> 00:19:11,379 IMPROVE THE SIGN TISK 579 00:19:11,379 --> 00:19:13,181 COMMUNITY'S UNDERSTANDING OF OUR 580 00:19:13,181 --> 00:19:13,715 CONDITIONS. 581 00:19:13,715 --> 00:19:16,317 I STEPPED INTO THE ROLE EARLIER 582 00:19:16,317 --> 00:19:17,485 THIS YEAR. 583 00:19:17,485 --> 00:19:19,287 I FIRST BECAME CONNECTED WITH 584 00:19:19,287 --> 00:19:19,988 CLOVES SYNDROME COMMUNITY AFTER 585 00:19:19,988 --> 00:19:22,824 THE BIRTH OF MY DAUGHTER KIKI, 586 00:19:22,824 --> 00:19:25,026 WHO'S NOW 9, AND WHO HAS CLOVES. 587 00:19:25,026 --> 00:19:28,196 SO I AM A CLOVES MOM AND NOW 588 00:19:28,196 --> 00:19:32,934 E.D. 589 00:19:32,934 --> 00:19:34,168 COMMON CHALLENGES FOR MEMBERS OF 590 00:19:34,168 --> 00:19:35,903 OUR COMMUNITY, ESPECIALLY THOSE 591 00:19:35,903 --> 00:19:37,805 WITH COMPLEX LYMPHATIC 592 00:19:37,805 --> 00:19:39,207 INVOLVEMENT, INCLUDE RECURRENT 593 00:19:39,207 --> 00:19:40,675 BOUTS OF CELLULITIS, MANY OF 594 00:19:40,675 --> 00:19:42,643 WHICH REQUIRE HOSPITALIZATION, 595 00:19:42,643 --> 00:19:45,246 CHRONIC AND RECURRING PAIN IN 596 00:19:45,246 --> 00:19:46,881 LYMPHATIC MALFORMATIONS, AND A 597 00:19:46,881 --> 00:19:48,750 GENERAL DECREASE IN QUALITY OF 598 00:19:48,750 --> 00:19:50,718 LIFE OVERALL DUE TO PAIN, 599 00:19:50,718 --> 00:19:52,153 RECURRENT HOSPITALIZATIONS, AND 600 00:19:52,153 --> 00:19:54,689 EVERYTHING THAT ENTAILS, WHICH 601 00:19:54,689 --> 00:19:56,324 THE MEMBER OF OUR PATIENT 602 00:19:56,324 --> 00:19:58,159 COMMUNITY WAS GOING TO DISCUSS 603 00:19:58,159 --> 00:19:59,494 TODAY. 604 00:19:59,494 --> 00:20:01,229 I'M -- I DON'T SEE HER AND I'M 605 00:20:01,229 --> 00:20:02,764 WORRIED THAT SHE ACTUALLY CAME 606 00:20:02,764 --> 00:20:03,898 DOWN WITH CELLULITIS. 607 00:20:03,898 --> 00:20:06,034 SO WE'LL JUST SEE IF SHE LOGS IN 608 00:20:06,034 --> 00:20:14,809 BEFORE I'M DONE. 609 00:20:14,809 --> 00:20:17,412 OUR COMMUNITY'S SHARED RESOURCE 610 00:20:17,412 --> 00:20:18,246 CHALLENGES AROUND COMPLEX 611 00:20:18,246 --> 00:20:19,113 LYMPHATIC INVOLVEMENT INCLUDE A 612 00:20:19,113 --> 00:20:21,149 LACK OF EFFECTIVE TREATMENT 613 00:20:21,149 --> 00:20:23,151 OPTIONS, AS WAS MENTIONED BY 614 00:20:23,151 --> 00:20:27,688 DENISE AND CAT, THERE IS A -- 615 00:20:27,688 --> 00:20:31,626 THERE'S NOW ONES IS PIC3CA 616 00:20:31,626 --> 00:20:32,727 INHIBITOR MEDICATION THAT'S 617 00:20:32,727 --> 00:20:33,494 APPROVED AND AVAILABLE. 618 00:20:33,494 --> 00:20:34,595 IT'S VERY PROMISING FOR SOME, 619 00:20:34,595 --> 00:20:36,130 HOWEVER, IT DOES NOT WORK FOR 620 00:20:36,130 --> 00:20:39,333 EVERYONE, AND ACCESS TO IT IS 621 00:20:39,333 --> 00:20:41,335 VERY CHALLENGING DUE TO COST AND 622 00:20:41,335 --> 00:20:47,942 OTHER ISSUES. 623 00:20:47,942 --> 00:20:49,110 IN ADDITION TO MEDICATIONS 624 00:20:49,110 --> 00:20:51,979 ACCESS TO THERAPIES SUCH AS 625 00:20:51,979 --> 00:20:54,816 LYMPHEDEMA THERAPY HAVE PROVEN 626 00:20:54,816 --> 00:20:55,950 CHALLENGING JUST LIKE MANY 627 00:20:55,950 --> 00:20:56,384 OTHERS. 628 00:20:56,384 --> 00:20:58,553 ACCESS TO ADAPTIVE CLOTHING AND 629 00:20:58,553 --> 00:20:59,687 EQUIPMENT. 630 00:20:59,687 --> 00:21:00,855 ADAPTIVE CLOTHING IS AN 631 00:21:00,855 --> 00:21:02,256 EVER-PRESENT DISCUSSION IN OUR 632 00:21:02,256 --> 00:21:03,391 ONLINE COMMUNITY BECAUSE OF THE 633 00:21:03,391 --> 00:21:04,459 OVERWHELMING COST AND LACK OF 634 00:21:04,459 --> 00:21:05,193 INSURANCE SUPPORT. 635 00:21:05,193 --> 00:21:06,861 SO FOR EXAMPLE, A PAIR OF CUSTOM 636 00:21:06,861 --> 00:21:09,263 SHOES, WHICH IS VERY COMMON FOR 637 00:21:09,263 --> 00:21:14,735 MANY OF US, COSTS ABOUT $2,000. 638 00:21:14,735 --> 00:21:15,937 MANY INSURANCE PLANS WILL ONLY 639 00:21:15,937 --> 00:21:17,939 COVER THE COST OF ADAPTIVE SHOES 640 00:21:17,939 --> 00:21:19,607 IN CASES WHERE THE PATIENT HAS 641 00:21:19,607 --> 00:21:21,409 DIABETES. 642 00:21:21,409 --> 00:21:23,911 AND NEEDLESS TO SAY, CLOVES 643 00:21:23,911 --> 00:21:25,113 SYNDROME AND DIABETES DON'T 644 00:21:25,113 --> 00:21:27,415 SHARE A VENN DIAGRAM. 645 00:21:27,415 --> 00:21:28,616 MOST OF THE TIME. 646 00:21:28,616 --> 00:21:31,052 IN ADDITION, ACCESS TO 647 00:21:31,052 --> 00:21:32,653 THERAPEUTIC AND ADAPTIVE 648 00:21:32,653 --> 00:21:35,123 EQUIPMENT IS OFTEN MADE MORE 649 00:21:35,123 --> 00:21:36,357 COMPLICATED AND IN SOME CASES 650 00:21:36,357 --> 00:21:39,160 DAMAGING AND DANGEROUS BY 651 00:21:39,160 --> 00:21:40,761 INSURANCE COMPANIES' IGNORANCE 652 00:21:40,761 --> 00:21:43,397 TO PROS CONDITIONS. 653 00:21:43,397 --> 00:21:44,265 FINALLY, TRANSITION FROM 654 00:21:44,265 --> 00:21:45,700 PEDIATRIC TO ADULT CARE. 655 00:21:45,700 --> 00:21:47,435 BECAUSE CLOVES SYNDROME IS SO 656 00:21:47,435 --> 00:21:49,504 COMPLEX, AFFECTING MULTIPLE 657 00:21:49,504 --> 00:21:50,605 SYSTEMS, OUR PATIENTS IN 658 00:21:50,605 --> 00:21:52,840 PEDIATRICS ARE USUALLY SEEN AS 659 00:21:52,840 --> 00:21:54,242 DENISE MENTIONED BY 660 00:21:54,242 --> 00:21:55,643 INTERDISCIPLINARY OR 661 00:21:55,643 --> 00:21:56,844 MULTIDISCIPLINARY TEAMS, AND 662 00:21:56,844 --> 00:21:57,745 THEY SOMETIMES TRAVEL THOUSANDS 663 00:21:57,745 --> 00:21:59,780 OF MILES TO DO THAT. 664 00:21:59,780 --> 00:22:01,983 THAT MODEL IS MUCH LESS COMMON 665 00:22:01,983 --> 00:22:03,618 IN ADULT CARE, AND WHAT WE SEE 666 00:22:03,618 --> 00:22:05,386 IN OUR COMMUNITY IS THAT ADULTS 667 00:22:05,386 --> 00:22:09,257 TEND TO HAVE WORSE COMPLEX CARE 668 00:22:09,257 --> 00:22:10,892 OUTCOMES WHILE EXPENDING MORE 669 00:22:10,892 --> 00:22:11,926 TIME AND A ENERGY RESOURCES TO 670 00:22:11,926 --> 00:22:12,160 GET IT. 671 00:22:12,160 --> 00:22:13,694 THIS IS OFTEN DUE TO A LACK OF 672 00:22:13,694 --> 00:22:15,129 CARE COORDINATION AND 673 00:22:15,129 --> 00:22:15,630 COMMUNICATION BETWEEN 674 00:22:15,630 --> 00:22:20,368 SPECIALTIES. 675 00:22:20,368 --> 00:22:22,003 OUR TOP THREE WISHES FROM THE 676 00:22:22,003 --> 00:22:24,071 COMMUNITY, ESPECIALLY FOR THOSE 677 00:22:24,071 --> 00:22:25,273 WITH COMPLEX LYMPHATIC 678 00:22:25,273 --> 00:22:26,374 INVOLVEMENT, ARE EFFECTIVE 679 00:22:26,374 --> 00:22:28,342 MEDICATION TREATMENT OPTIONS, 680 00:22:28,342 --> 00:22:31,179 WITH SENSICAL TRIAL END POINT 681 00:22:31,179 --> 00:22:32,146 DESIGN. 682 00:22:32,146 --> 00:22:35,049 BECAUSE PIK3CA INHIBITORS WERE 683 00:22:35,049 --> 00:22:36,217 ORIGINALLY DESIGNED TO BATTLE 684 00:22:36,217 --> 00:22:37,418 BREAST CANCER, CLINICAL TRIALS 685 00:22:37,418 --> 00:22:38,953 FOR THESE DRUGS EVEN DURING 686 00:22:38,953 --> 00:22:40,922 REPURPOSING ARE DESIGNED WITH A 687 00:22:40,922 --> 00:22:42,056 CURE MINDSET AND NOT A 688 00:22:42,056 --> 00:22:42,657 MANAGEMENT ONE. 689 00:22:42,657 --> 00:22:44,392 THIS LEADS TO DELAY IN DRUG 690 00:22:44,392 --> 00:22:46,627 APPROVAL AND IN WORST-CASE 691 00:22:46,627 --> 00:22:47,495 SCENARIOS DRUGS THAT COULD BE 692 00:22:47,495 --> 00:22:48,829 BENEFICIAL TO OUR COMMUNITY 693 00:22:48,829 --> 00:22:51,299 NEVER RECEIVING APPROVAL AT ALL. 694 00:22:51,299 --> 00:22:53,734 NUMBER TWO, AFFORDABLE ACCESS TO 695 00:22:53,734 --> 00:22:55,236 CUSTOM GARMENTS, EQUIPMENT AND 696 00:22:55,236 --> 00:22:58,539 SUPPORT SERVICES AND THERAPY, 697 00:22:58,539 --> 00:23:00,741 AND THREE, COMMON 698 00:23:00,741 --> 00:23:01,475 MULTI-/INTERDISCIPLINARY MODEL 699 00:23:01,475 --> 00:23:03,611 IN ADULT CARE FOR COMPLEX 700 00:23:03,611 --> 00:23:05,146 CONDITIONS WITH TRANSITION 701 00:23:05,146 --> 00:23:08,049 COORDINATION FROM PEDIATRICS. 702 00:23:08,049 --> 00:23:13,421 SO LIKE I MENTIONED BEFORE, I'M 703 00:23:13,421 --> 00:23:14,722 SCROLLING THROUGH TO MAKE SURE 704 00:23:14,722 --> 00:23:16,123 SHE DIDN'T APPEAR WHILE I WAS 705 00:23:16,123 --> 00:23:17,692 TALKING, I HAD PLANNED TO PASS 706 00:23:17,692 --> 00:23:19,627 THE MIC TO LINDSAY EDWARDS, AN 707 00:23:19,627 --> 00:23:20,928 ADULT WITH CLOVES SYNDROME IN 708 00:23:20,928 --> 00:23:21,295 OUR COMMUNITY. 709 00:23:21,295 --> 00:23:22,597 SHE'S ALSO A MEMBER OF OUR 710 00:23:22,597 --> 00:23:25,132 FAMILY ADVISORY COUNCIL. 711 00:23:25,132 --> 00:23:27,335 A VERY COOL HUMAN BEING AND A 712 00:23:27,335 --> 00:23:28,336 PH.D. STUDENT STUDYING 713 00:23:28,336 --> 00:23:30,037 DISABILITY ETHICS, BUT 714 00:23:30,037 --> 00:23:30,938 UNFORTUNATELY WHEN I SPOKE TO 715 00:23:30,938 --> 00:23:32,306 HER AT THE END OF THE WEEK 716 00:23:32,306 --> 00:23:34,342 BEFORE THE HOLIDAY, SHE WAS 717 00:23:34,342 --> 00:23:35,376 WORRIED SHE WAS GETTING 718 00:23:35,376 --> 00:23:37,078 CELLULITIS AND I DON'T SEE HER 719 00:23:37,078 --> 00:23:41,682 HERE. 720 00:23:41,682 --> 00:23:43,417 SO SO THAT MAY BE THE CASE. 721 00:23:43,417 --> 00:23:44,252 >> THANK YOU, LAUREN. 722 00:23:44,252 --> 00:23:46,988 IF SHE JOINS DURING THE MEETING, 723 00:23:46,988 --> 00:23:49,523 WE CAN SPOTLIGHT HER AGAIN. 724 00:23:49,523 --> 00:23:49,857 NO PROBLEM. 725 00:23:49,857 --> 00:23:50,491 >> PERFECT. 726 00:23:50,491 --> 00:23:52,159 THAT WOULD BE GREAT. 727 00:23:52,159 --> 00:23:53,661 I HOPE THAT'S NOT THE CASE, 728 00:23:53,661 --> 00:23:54,528 BUT -- 729 00:23:54,528 --> 00:23:54,829 >> YES. 730 00:23:54,829 --> 00:23:56,430 >> THAT HAPPENS. 731 00:23:56,430 --> 00:23:57,632 SO THANK YOU ALL FOR YOUR TIME 732 00:23:57,632 --> 00:23:59,233 AND TO THE COALITION FOR GIVING 733 00:23:59,233 --> 00:24:00,434 US ALL THE OPPORTUNITY TO SPEAK 734 00:24:00,434 --> 00:24:00,868 TODAY. 735 00:24:00,868 --> 00:24:03,604 WE REALLY APPRECIATE IT. 736 00:24:03,604 --> 00:24:04,505 >> THANK YOU AGAIN. 737 00:24:04,505 --> 00:24:06,807 >> THANK YOU. 738 00:24:06,807 --> 00:24:08,476 >> THANKS, LAUREN. 739 00:24:08,476 --> 00:24:12,680 NOW WE CAN GET BACK TO KAREN. 740 00:24:12,680 --> 00:24:13,948 SORRY YOU HAD TECHNICAL 741 00:24:13,948 --> 00:24:14,415 DIFFICULTIES. 742 00:24:14,415 --> 00:24:16,484 SO OUR NEXT SPEAKER IS KAREN 743 00:24:16,484 --> 00:24:17,051 BALL. 744 00:24:17,051 --> 00:24:19,553 SHE IS THE FOUNDER AND CHIEF 745 00:24:19,553 --> 00:24:20,554 EXECUTIVE OFFICER OF 746 00:24:20,554 --> 00:24:22,189 STURGE-WEBER FOUNDATION. 747 00:24:22,189 --> 00:24:24,492 KAREN, IF YOU CAN START YOUR 748 00:24:24,492 --> 00:24:24,859 PRESENTATION. 749 00:24:24,859 --> 00:24:26,060 THANK YOU. 750 00:24:26,060 --> 00:24:27,128 >> WELL, WE'LL GIVE IT A SHOT 751 00:24:27,128 --> 00:24:28,195 HERE. 752 00:24:28,195 --> 00:24:30,965 I'M A DINOSAUR IN TODAY'S WORLD, 753 00:24:30,965 --> 00:24:32,633 BUT I'M ALSO IN RURAL MONTANA, 754 00:24:32,633 --> 00:24:34,135 SO THINGS ARE SPOTTY. 755 00:24:34,135 --> 00:24:35,970 I APOLOGIZE UP FRONT. 756 00:24:35,970 --> 00:24:38,506 YES, I FOUNDED THE STURGE-WEBER 757 00:24:38,506 --> 00:24:42,877 FOUNDATION IN 1986, AND MY 758 00:24:42,877 --> 00:24:44,845 DAUGHTER WAS BORN WITH 759 00:24:44,845 --> 00:24:47,014 STURGE-WEBER, BILATERAL FACE AND 760 00:24:47,014 --> 00:24:49,717 BILATERAL GLAUCOMA AND MOST OF 761 00:24:49,717 --> 00:24:51,819 HER LEFT SIDE OF HER BRAIN IS 762 00:24:51,819 --> 00:24:52,920 CALCIFIED AND IS NOT WORKING. 763 00:24:52,920 --> 00:25:02,163 SO THE RIGHT SIDE TOOK OVER. 764 00:25:02,163 --> 00:25:06,000 OUR CHALLENGES, UNLIKE MANY OF 765 00:25:06,000 --> 00:25:07,935 THOSE WHO ARE DIRECTLY IMPACTED 766 00:25:07,935 --> 00:25:11,706 BY A LYMPHATIC COMPONENT TO 767 00:25:11,706 --> 00:25:12,940 THEIR SYNDROME AND THEIR DISEASE 768 00:25:12,940 --> 00:25:15,676 ARE MANY BECAUSE WE CROSS 769 00:25:15,676 --> 00:25:16,744 MULTISYSTEMS. 770 00:25:16,744 --> 00:25:19,613 SEIZURES USUALLY START BY AGE 1, 771 00:25:19,613 --> 00:25:23,718 YOU KNOW, TYPICAL TREATMENTS 772 00:25:23,718 --> 00:25:25,453 WITH ANTICONVULSANT, GLAUCOMA, 773 00:25:25,453 --> 00:25:27,521 70% OF THEM USUALLY PRESENT WITH 774 00:25:27,521 --> 00:25:29,423 GLAUCOMA WHERE THE BIRTH MARK IS 775 00:25:29,423 --> 00:25:31,659 OVER THE AFFECTED EYE TYPICALLY. 776 00:25:31,659 --> 00:25:33,994 THERE CAN BE PARASYMPATHETIC 777 00:25:33,994 --> 00:25:36,364 WITH THE OTHER BUT IT'S RARE. 778 00:25:36,364 --> 00:25:37,865 DEVELOPMENTAL DELAYS, MANY OF 779 00:25:37,865 --> 00:25:39,400 THEM HAVE THEM. 780 00:25:39,400 --> 00:25:41,435 DEPENDING ON WHEN THE SEIZURES 781 00:25:41,435 --> 00:25:42,303 START, WE HAVE FOUND THAT IF 782 00:25:42,303 --> 00:25:44,138 THEY START AFTER THE AGE OF 1, 783 00:25:44,138 --> 00:25:46,807 IT'S USUALLY A LITTLE BETTER 784 00:25:46,807 --> 00:25:48,109 OUTCOME FOR THAT. 785 00:25:48,109 --> 00:25:50,144 LEARNING DISABILITIES, VERY, 786 00:25:50,144 --> 00:25:51,846 VERY COMMON. 787 00:25:51,846 --> 00:25:53,914 COMORBIDITIES OF ADHD ARE THERE 788 00:25:53,914 --> 00:25:58,352 AS WELL AS OTHER LEARNING 789 00:25:58,352 --> 00:25:59,620 CHALLENGES. 790 00:25:59,620 --> 00:26:02,823 THE IMPAIRED BLOOD FLOW TO THE 791 00:26:02,823 --> 00:26:04,692 BRAIN IS A SPECIFIC CHALLENGE 792 00:26:04,692 --> 00:26:07,628 FOR OURS BECAUSE IT CAN CAUSE 793 00:26:07,628 --> 00:26:08,896 ISCHEMIC STROKES. 794 00:26:08,896 --> 00:26:12,266 AND OFTENTIMES THE SEVERE 795 00:26:12,266 --> 00:26:13,701 MIGRAINES ARE REALLY MAYBE A 796 00:26:13,701 --> 00:26:15,669 STROKE OR VICE VERSA. 797 00:26:15,669 --> 00:26:20,608 SO MUCH AS DENISE SAID WHICH WAS 798 00:26:20,608 --> 00:26:21,842 A VERY EXCELLENT PRESENTATION BY 799 00:26:21,842 --> 00:26:23,611 THE WAY, DENISE, WE HAVE ALL OF 800 00:26:23,611 --> 00:26:25,579 THOSE FINANCIAL, MEDICAL 801 00:26:25,579 --> 00:26:25,980 CHALLENGES. 802 00:26:25,980 --> 00:26:29,617 TO THAT END, WE ESTABLISHED 26 803 00:26:29,617 --> 00:26:32,820 CENTERS AROUND THE COUNTRY TO 804 00:26:32,820 --> 00:26:34,989 COORDINATE WITH EACH OTHER AND 805 00:26:34,989 --> 00:26:36,290 DIFFERENT SPECIALTIES WITHIN 806 00:26:36,290 --> 00:26:37,391 THEIR INSTITUTION TO ADDRESS 807 00:26:37,391 --> 00:26:39,460 THESE NEEDS. 808 00:26:39,460 --> 00:26:43,097 BEHAVIORAL PROBLEMS, ESPECIALLY 809 00:26:43,097 --> 00:26:46,600 IN THE MIDDLE SCHOOL YEARS, WHEN 810 00:26:46,600 --> 00:26:48,335 THE HORMONES ARE RAGING, A LOT 811 00:26:48,335 --> 00:26:50,504 OF THAT COMES UP. 812 00:26:50,504 --> 00:26:54,241 AND THEN ENDOCRINE ISSUES AS 813 00:26:54,241 --> 00:26:55,676 WELL, GROWTH HORMONE 814 00:26:55,676 --> 00:26:57,178 ABNORMALITIES ARE THERE, AND SO 815 00:26:57,178 --> 00:27:00,648 SOME MEDICATIONS ARE TAKEN FOR 816 00:27:00,648 --> 00:27:01,782 THAT. 817 00:27:01,782 --> 00:27:05,085 THOSE ARE THE MEDICAL 818 00:27:05,085 --> 00:27:05,953 CHALLENGES, BUT MANY OF THE 819 00:27:05,953 --> 00:27:09,990 THINGS DENI DENISE POINTED OUT R 820 00:27:09,990 --> 00:27:11,091 TALK AND THE PREVIOUS SPEAKERS 821 00:27:11,091 --> 00:27:11,959 AS WELL. 822 00:27:11,959 --> 00:27:14,195 ACCESS TO CARE AND THE FINANCIAL 823 00:27:14,195 --> 00:27:16,964 BURDEN ON THE FAMILY IS GREAT. 824 00:27:16,964 --> 00:27:21,035 SO THE FOUNDATION HAS 825 00:27:21,035 --> 00:27:22,603 ESTABLISHED A COUPLE PATIENT 826 00:27:22,603 --> 00:27:26,740 FUNDS TO ASSIST WITH TRAVEL 827 00:27:26,740 --> 00:27:28,576 PAPER FUNDING FOR HOTELS, GAS, 828 00:27:28,576 --> 00:27:32,079 AIRFARE, THAT TYPE OF THING. 829 00:27:32,079 --> 00:27:33,414 SO WE'RE TRYING TO ADDRESS THAT 830 00:27:33,414 --> 00:27:34,815 CHALLENGE AND ALSO, LIKE I SAID, 831 00:27:34,815 --> 00:27:43,791 WITH THE 26 CENTERS. 832 00:27:43,791 --> 00:27:45,626 OH, HMMM. 833 00:27:45,626 --> 00:27:46,460 DON'T KNOW WHAT HAPPENED WITH 834 00:27:46,460 --> 00:27:47,261 THAT ONE. 835 00:27:47,261 --> 00:27:47,928 I APOLOGIZE. 836 00:27:47,928 --> 00:27:49,697 THE RESOURCE CHALLENGES, 837 00:27:49,697 --> 00:27:54,001 DIAGNOSTIC, AGAIN, IT'S HARD AS 838 00:27:54,001 --> 00:27:56,937 DENISE SAID TO FIND THE EXACT 839 00:27:56,937 --> 00:28:00,641 CARE PROVIDER THAT WILL ADDRESS 840 00:28:00,641 --> 00:28:01,275 THE PROGRESSIVE -- BECAUSE IT IS 841 00:28:01,275 --> 00:28:03,143 A PROGRESSIVE DISEASE, SO AT ANY 842 00:28:03,143 --> 00:28:04,378 GIVEN TIME THROUGHOUT YOUR 843 00:28:04,378 --> 00:28:05,446 LIFETIME, YOU'RE GOING TO NEED 844 00:28:05,446 --> 00:28:08,749 DIFFERENT ACCESS TO CARE. 845 00:28:08,749 --> 00:28:10,584 TREATMENT, AGAIN, WE FOUND THE 846 00:28:10,584 --> 00:28:12,686 GENE A LITTLE OVER 10 YEARS AGO, 847 00:28:12,686 --> 00:28:14,755 SO WE'RE WORKING ON MOUSE AND 848 00:28:14,755 --> 00:28:17,024 ANIMAL MODELS, WHICH WILL HELP 849 00:28:17,024 --> 00:28:19,560 US PROGRESS OUR ABILITY TO 850 00:28:19,560 --> 00:28:20,761 PROVIDE GREATER TREATMENT FOR 851 00:28:20,761 --> 00:28:25,032 THE KIDS AND ADULTS. 852 00:28:25,032 --> 00:28:26,433 A LOT OF INFORMATION GAPS, OH, 853 00:28:26,433 --> 00:28:31,972 MY GOSH, THEY ARE TOO NUMEROUS 854 00:28:31,972 --> 00:28:35,843 TO MENTION, BUT BECAUSE IT IS A 855 00:28:35,843 --> 00:28:37,278 SYNDROME, EACH CASE IS UNIQUE, 856 00:28:37,278 --> 00:28:40,748 EVEN THOUGH THEY'VE GOT THE SAME 857 00:28:40,748 --> 00:28:42,416 GNAQ GENE MUTATION. 858 00:28:42,416 --> 00:28:43,851 IT JUST DEPENDS ON HOW IT 859 00:28:43,851 --> 00:28:47,054 EXPRESSES. 860 00:28:47,054 --> 00:28:48,789 ACCESS TO SPECIALISTS IS AGAIN, 861 00:28:48,789 --> 00:28:50,391 AS DENISE POINTED OUT, IT'S 862 00:28:50,391 --> 00:28:52,960 HARD, IT'S EXPENSIVE. 863 00:28:52,960 --> 00:28:55,195 FINANCIAL STRUGGLES, FOR 864 00:28:55,195 --> 00:28:57,898 INSTANCE, LIKE WITH MY DAUGHTER, 865 00:28:57,898 --> 00:29:00,601 WE PAY $26,000 A YEAR OUT OF 866 00:29:00,601 --> 00:29:02,903 POCKET MEDICAL FOR 26 YEARS 867 00:29:02,903 --> 00:29:05,639 UNTIL SHE WENT ON HER OWN 868 00:29:05,639 --> 00:29:07,074 INSURANCE. 869 00:29:07,074 --> 00:29:09,209 AND WE ARE VERY FORTUNATE 870 00:29:09,209 --> 00:29:11,011 COMPARED TO SOME OTHERS. 871 00:29:11,011 --> 00:29:15,783 I KNOW I HAD ONE PATIENT THAT 872 00:29:15,783 --> 00:29:17,418 THEIR MEDICATION IS $1,000 A 873 00:29:17,418 --> 00:29:18,752 MONTH AND THEY JUST HAVE TO PAY 874 00:29:18,752 --> 00:29:20,721 FOR IT OUT OF POCKET. 875 00:29:20,721 --> 00:29:22,890 SOCIAL CHALLENGES, I'M SURE 876 00:29:22,890 --> 00:29:24,758 WE'LL HEAR FROM OTHERS AS WELL. 877 00:29:24,758 --> 00:29:30,998 IT CAN BE CHALLENGING TO MAKE 878 00:29:30,998 --> 00:29:34,301 AND MAINTAIN FRIENDSHIPS. 879 00:29:34,301 --> 00:29:35,436 NOT ONLY FOR THE PATIENT BUT FOR 880 00:29:35,436 --> 00:29:38,205 THE FAMILY AS WELL. 881 00:29:38,205 --> 00:29:39,406 BECAUSE WE'VE FOUND AND HEARD 882 00:29:39,406 --> 00:29:42,142 THROUGH MANY OF OUR FAMILIES 883 00:29:42,142 --> 00:29:43,978 THAT YOU OFTEN DON'T GET INVITED 884 00:29:43,978 --> 00:29:45,112 TO A GATHERING BECAUSE YOU'RE 885 00:29:45,112 --> 00:29:47,114 AFRAID YOUR CHILD IS GOING TO 886 00:29:47,114 --> 00:29:49,083 HAVE A SEIZURE, OR THEY DON'T 887 00:29:49,083 --> 00:29:51,485 KNOW WHAT TO SAY TO THE PARENT 888 00:29:51,485 --> 00:29:52,853 WHEN THERE'S A CHALLENGE COMING 889 00:29:52,853 --> 00:29:55,856 UP. 890 00:29:55,856 --> 00:29:58,058 SO WHAT WE DO TO CIRCUMNAVIGATE 891 00:29:58,058 --> 00:30:01,629 THAT IS WE DO A LOT OF ONLINE 892 00:30:01,629 --> 00:30:04,331 HEMONTHLY FORUMS FOR THE 893 00:30:04,331 --> 00:30:05,032 CAREGIVERS AS WELL AS THE 894 00:30:05,032 --> 00:30:07,301 PATIENTS AND WE ALSO HAVE A 895 00:30:07,301 --> 00:30:08,836 MENTAL HEALTH EXPERT IN BOSTON 896 00:30:08,836 --> 00:30:12,973 WHO COORDINATES AND FACILITATES 897 00:30:12,973 --> 00:30:15,776 A CHAT ON THAT PARTICULAR 898 00:30:15,776 --> 00:30:16,010 ASPECT. 899 00:30:16,010 --> 00:30:17,511 SO AS YOU CAN SEE FROM MY LITTLE 900 00:30:17,511 --> 00:30:20,247 FRIEND WITH HIS BLUE MOHAWK, 901 00:30:20,247 --> 00:30:23,517 HE'S CHOSE TO JUST EXPRESS 902 00:30:23,517 --> 00:30:24,518 HIMSELF, YOU KNOW, I JUST LOVE 903 00:30:24,518 --> 00:30:27,488 HIM. 904 00:30:27,488 --> 00:30:28,722 HE'S JUST -- BUT ONE OF THE 905 00:30:28,722 --> 00:30:30,858 THINGS YOU CAN SEE FROM HIS FACE 906 00:30:30,858 --> 00:30:34,728 IS THERE IS THAT HYPERTROPHY TO 907 00:30:34,728 --> 00:30:37,731 THE SOFT TISSUE AREA, AND THAT 908 00:30:37,731 --> 00:30:43,737 IS A REAL BIG CHALLENGE THAT WE 909 00:30:43,737 --> 00:30:44,738 HAVE IN MANY OF THEM. 910 00:30:44,738 --> 00:30:46,940 WE DON'T HAVE ANY EXPERTS THAT 911 00:30:46,940 --> 00:30:48,042 ARE REALLY ADDRESSING THAT. 912 00:30:48,042 --> 00:30:51,311 IT MAY BE ANOTHER GENE THAT'S 913 00:30:51,311 --> 00:30:51,612 AFFECTED. 914 00:30:51,612 --> 00:30:52,212 WE DON'T KNOW. 915 00:30:52,212 --> 00:30:55,182 AND AGAIN, MUCH LIKE RARE 916 00:30:55,182 --> 00:30:56,316 DISEASES, WE'RE ONLY LIMITED BY 917 00:30:56,316 --> 00:30:57,551 THE AMOUNT OF MONEY THAT WE HAVE 918 00:30:57,551 --> 00:31:02,523 TO GIVE FOR RESEARCH FOR TISSUE 919 00:31:02,523 --> 00:31:04,992 DONATION AND THINGS OF THAT 920 00:31:04,992 --> 00:31:05,225 NATURE. 921 00:31:05,225 --> 00:31:07,027 SO KIND OF A CATCH 22, BUT I AM 922 00:31:07,027 --> 00:31:09,029 PROUD OF WHAT WE'VE DONE ON A 923 00:31:09,029 --> 00:31:19,339 SHOESTRING BUDGET. 924 00:31:22,276 --> 00:31:23,477 THE THREE WISHES THAT WE HAVE 925 00:31:23,477 --> 00:31:28,916 ARE OBVIOUSLY TO FIND A CURE. 926 00:31:28,916 --> 00:31:30,818 AND I KNOW THAT TERMS IS THROWN 927 00:31:30,818 --> 00:31:32,319 AROUND BY A LOT OF PEOPLE AND 928 00:31:32,319 --> 00:31:35,789 WHAT EXACTLY DOES A CURE MEAN? 929 00:31:35,789 --> 00:31:36,690 WHETHER I STARTED THE 930 00:31:36,690 --> 00:31:38,058 FOUNDATION, MY HOPE AND DREAM 931 00:31:38,058 --> 00:31:39,226 WAS THAT WE WOULD BE ABLE TO 932 00:31:39,226 --> 00:31:41,628 FIND WHAT CAUSED IT AND 933 00:31:41,628 --> 00:31:43,731 INTERVENE SO THAT NOBODY HAD TO 934 00:31:43,731 --> 00:31:46,100 HAVE STURGE-WEBER AGAIN. 935 00:31:46,100 --> 00:31:47,701 SO THAT WAS THE ULTIMATE GOAL, 936 00:31:47,701 --> 00:31:48,669 AND THAT WOULD BE THE CURE. 937 00:31:48,669 --> 00:31:52,506 BUT IN THE MEANTIME, JUST TO GET 938 00:31:52,506 --> 00:31:53,807 TREATMENTS THAT CAN IMPROVE THE 939 00:31:53,807 --> 00:31:56,076 QUALITY OF LIFE AND CARE FOR 940 00:31:56,076 --> 00:31:57,878 THEM IS A TOP PRIORITY. 941 00:31:57,878 --> 00:32:00,447 SO WE ARE WORKING ON MOUSE 942 00:32:00,447 --> 00:32:02,349 MODELS AND ZEBRAFISH MODELS ARE 943 00:32:02,349 --> 00:32:04,384 PROVING REALLY, REALLY GOOD. 944 00:32:04,384 --> 00:32:07,287 THERE ARE ACTUALLY -- DENISE IS 945 00:32:07,287 --> 00:32:15,462 A CANCER DRUG -- DENISE HAS A CG 946 00:32:15,462 --> 00:32:16,663 THAT WE'RE LOOKING INTO. 947 00:32:16,663 --> 00:32:17,731 MIGRAINES SEEM TO IMPACT 948 00:32:17,731 --> 00:32:19,032 PEOPLE'S LIVES TREMENDOUSLY WHEN 949 00:32:19,032 --> 00:32:20,601 THEY'RE AT SCHOOL, WORK, TIME 950 00:32:20,601 --> 00:32:21,235 OFF WORK. 951 00:32:21,235 --> 00:32:24,037 WE'VE HAD PEOPLE LOSE JOBS 952 00:32:24,037 --> 00:32:28,575 BECAUSE OF THE MEDICAL ISSUES. 953 00:32:28,575 --> 00:32:30,744 SO IF WE COULD TACKLE A BETTER 954 00:32:30,744 --> 00:32:32,713 UNDERSTANDING OF THE MIGRAINES 955 00:32:32,713 --> 00:32:35,983 AND THEIR IMPACT ON THE PATIENT 956 00:32:35,983 --> 00:32:37,451 AND FAMILY, THAT WOULD BE A BIG 957 00:32:37,451 --> 00:32:37,618 ONE. 958 00:32:37,618 --> 00:32:42,422 AND THE OTHER THING, YOU KNOW, 959 00:32:42,422 --> 00:32:47,361 MY DAUGHTER IS 38 NOW. 960 00:32:47,361 --> 00:32:48,762 SH'S STILL HAVING LASER 961 00:32:48,762 --> 00:32:50,230 TREATMENTS, STILL HAVING TISSUE 962 00:32:50,230 --> 00:32:51,198 REDUCTION ON HER UPPER LIP 963 00:32:51,198 --> 00:32:53,133 BECAUSE IT'S SO FAT AND THICK, 964 00:32:53,133 --> 00:32:55,369 SHE'S HAD THREE ACTUALLY. 965 00:32:55,369 --> 00:32:59,373 SO I WOULD LIKE TO SEE AN 966 00:32:59,373 --> 00:33:00,073 IMPROVEMENT IN THE LASER. 967 00:33:00,073 --> 00:33:01,942 I MEAN, WHY SHOULD SOMEONE, 968 00:33:01,942 --> 00:33:05,946 AFTER 40 YEARS, STILL HAVE TO 969 00:33:05,946 --> 00:33:07,181 HAVE LASER TREATMENTS? 970 00:33:07,181 --> 00:33:10,651 IT MAKES -- IT'S ALMOST CRUEL. 971 00:33:10,651 --> 00:33:13,320 SO WE'LL BE WORKING WITH ASLMS 972 00:33:13,320 --> 00:33:15,255 AND SOME OF THE OTHER 973 00:33:15,255 --> 00:33:17,758 ORGANIZATIONS TO SEE WHAT WE CAN 974 00:33:17,758 --> 00:33:20,294 DO TO GET A MORE EXPEDITIOUS 975 00:33:20,294 --> 00:33:22,062 TREATMENT AS FAR AS THAT GOES. 976 00:33:22,062 --> 00:33:24,264 I WAS HOPING TO HAVE A SLIDE FOR 977 00:33:24,264 --> 00:33:25,399 YOU ALL BUT WE DIDN'T GET IT IN 978 00:33:25,399 --> 00:33:27,201 THE DECK IN TIME. 979 00:33:27,201 --> 00:33:29,603 WE RECENTLY HAD A CONFERENCE IN 980 00:33:29,603 --> 00:33:30,437 PHILADELPHIA THIS SUMMER AND WE 981 00:33:30,437 --> 00:33:35,309 HAD AN 82-YEAR-OLD MAN THAT HAD 982 00:33:35,309 --> 00:33:37,277 STURGE-WEBER, AND AN 8 MONTH OLD 983 00:33:37,277 --> 00:33:37,477 BABY. 984 00:33:37,477 --> 00:33:40,647 AND IT'S JUST SUCH AN EVOCATIVE 985 00:33:40,647 --> 00:33:44,685 PHOTO BECAUSE HE HAS SUCH 986 00:33:44,685 --> 00:33:48,288 OVERGROWTH, VERY ELEPHANTINE, 987 00:33:48,288 --> 00:33:50,257 NODULAR, AND IT'S VERY 988 00:33:50,257 --> 00:33:52,726 INDICATIVE OF WHAT WE HAVE TO 989 00:33:52,726 --> 00:33:57,030 FIGURE OUT AS TO WHY WE CAN'T 990 00:33:57,030 --> 00:33:59,132 GET TO THE ROOT CAUSE OF THAT. 991 00:33:59,132 --> 00:34:00,133 AND THEN YOU'VE GOT THE HOPE OF 992 00:34:00,133 --> 00:34:01,735 THE FUTURE WITH THAT LITTLE 993 00:34:01,735 --> 00:34:04,204 BABY, WHO, YOU KNOW, WE INVEST 994 00:34:04,204 --> 00:34:06,406 WISELY, WE SHOULD BE ABLE TO 995 00:34:06,406 --> 00:34:07,274 IMPROVE THEIR QUALITY OF LIFE 996 00:34:07,274 --> 00:34:10,143 AND CARE TOO, BUT I APPRECIATE 997 00:34:10,143 --> 00:34:12,246 YOU ALL GIVING TIME TODAY, AND 998 00:34:12,246 --> 00:34:15,315 AGAIN, APOLOGIZE FOR THE 999 00:34:15,315 --> 00:34:16,984 SPOTTINESS, BUT MONTANA IS A 1000 00:34:16,984 --> 00:34:18,719 GREAT PLACE TO VISIT BUT NOT SO 1001 00:34:18,719 --> 00:34:19,786 GREAT ON INTERNET. 1002 00:34:19,786 --> 00:34:22,222 THANK YOU SO MUCH. 1003 00:34:22,222 --> 00:34:23,223 >> THANK YOU, KAREN. 1004 00:34:23,223 --> 00:34:27,194 THANK YOU FOR YOUR RESILIENCE 1005 00:34:27,194 --> 00:34:29,963 TOO, TO OVERCOME YOUR TECHNICAL 1006 00:34:29,963 --> 00:34:30,297 CHALLENGES. 1007 00:34:30,297 --> 00:34:33,233 WE REALLY APPRECIATE THIS 1008 00:34:33,233 --> 00:34:33,700 PRESENTATION. 1009 00:34:33,700 --> 00:34:35,302 WITH THAT, WE WILL MOVE TO THE 1010 00:34:35,302 --> 00:34:39,640 NEXT PRESENTER. 1011 00:34:39,640 --> 00:34:41,642 CHRISTY -- OH, SORRY, JEN BOYCE 1012 00:34:41,642 --> 00:34:43,310 AND KEVIN BOYCE, THEY ARE THE 1013 00:34:43,310 --> 00:34:44,411 FOUNDERS OF WILL'S POWER. 1014 00:34:44,411 --> 00:34:46,813 AND I HOPE YOUR CONNECTION IS 1015 00:34:46,813 --> 00:34:49,216 WELL. 1016 00:34:49,216 --> 00:34:50,651 >> ALL RIGHT! 1017 00:34:50,651 --> 00:34:52,319 CAN YOU HEAR US OKAY? 1018 00:34:52,319 --> 00:34:53,787 >> YES. 1019 00:34:53,787 --> 00:34:54,454 >> EXCELLENT. 1020 00:34:54,454 --> 00:34:55,355 GOOD MORNING, EVERYONE. 1021 00:34:55,355 --> 00:34:57,090 AND THANK YOU FOR INVITING US TO 1022 00:34:57,090 --> 00:34:58,425 PARTICIPATE IN THIS FORUM TODAY. 1023 00:34:58,425 --> 00:35:00,394 WE ARE JEN AND KEVIN. 1024 00:35:00,394 --> 00:35:01,795 OUR CREDENTIALS MIGHT BE 1025 00:35:01,795 --> 00:35:03,664 SOMEWHAT LACKING IN THE FIELD OF 1026 00:35:03,664 --> 00:35:04,431 LYMPHATIC DISEASE. 1027 00:35:04,431 --> 00:35:06,133 OUR REASON FOR BEING INVOLVED 1028 00:35:06,133 --> 00:35:08,168 HAS BEEN FIRSTHAND IN NATURE, 1029 00:35:08,168 --> 00:35:10,504 AND OUR SON HAS A GENERALIZED 1030 00:35:10,504 --> 00:35:11,805 LYMPHATIC ANOMALY. 1031 00:35:11,805 --> 00:35:14,274 HE WAS DIAGNOSED IN 2022 AT THE 1032 00:35:14,274 --> 00:35:16,510 AGE OF 9, FOLLOWING 1033 00:35:16,510 --> 00:35:18,946 APPROXIMATELY TWO YEARS OF 1034 00:35:18,946 --> 00:35:19,746 REPEATED EXTENSIVE 1035 00:35:19,746 --> 00:35:20,514 HOSPITALIZATIONS, WHERE WE WERE 1036 00:35:20,514 --> 00:35:21,748 TOLD ON MANY OCCASIONS TO 1037 00:35:21,748 --> 00:35:23,684 PREPARE FOR THE WORST. 1038 00:35:23,684 --> 00:35:26,453 AFTER HIS DIAGNOSIS AND AFTER 1039 00:35:26,453 --> 00:35:29,790 INTENSE INTERNET RESEARCH AND 1040 00:35:29,790 --> 00:35:31,124 SCANNING OF SOCIAL MEDIA 1041 00:35:31,124 --> 00:35:32,426 CHANNELS, WE QUICKLY LEARNED OUR 1042 00:35:32,426 --> 00:35:34,528 SON'S EXPERIENCE WITH FINDING A 1043 00:35:34,528 --> 00:35:35,395 TIMELY AND ACCURATE DIAGNOSIS 1044 00:35:35,395 --> 00:35:37,597 FOR HIS CONDITION WAS NOT 1045 00:35:37,597 --> 00:35:38,131 UNIQUE. 1046 00:35:38,131 --> 00:35:39,967 IT IS ENCOUNTERED REGULARLY BY 1047 00:35:39,967 --> 00:35:41,168 PATIENTS WITH LYMPHATIC 1048 00:35:41,168 --> 00:35:42,069 ANOMALIES. 1049 00:35:42,069 --> 00:35:43,870 BEING RARE DISEASES, PATIENTS 1050 00:35:43,870 --> 00:35:45,672 WITH COMPLEX LYMPHATIC ANOMALIES 1051 00:35:45,672 --> 00:35:47,975 SUFFER FROM BOTH THEIR 1052 00:35:47,975 --> 00:35:49,643 DEBILITATING MEDICAL CONDITION 1053 00:35:49,643 --> 00:35:51,378 AND A GENERAL LACK OF AWARENESS 1054 00:35:51,378 --> 00:35:53,013 OF THE ACTUAL DISEASE WITHIN THE 1055 00:35:53,013 --> 00:35:54,948 GREATER MEDICAL COMMUNITY. 1056 00:35:54,948 --> 00:35:57,250 IN OUR SON'S CASE, DESPITE BEING 1057 00:35:57,250 --> 00:35:58,852 ADMITTED TO OUR LOCAL CHILDREN'S 1058 00:35:58,852 --> 00:36:00,854 HOSPITAL WITH A VASCULAR DISEASE 1059 00:36:00,854 --> 00:36:03,490 CLINIC, IT WAS NOT UNTIL HIS 1060 00:36:03,490 --> 00:36:04,958 FOURTH EMERGENCY ICU VISIT IN 1061 00:36:04,958 --> 00:36:07,527 LESS THAN 18 MONTHS THAT HE WAS 1062 00:36:07,527 --> 00:36:09,062 FINALLY DECIDED TO HAVE A 1063 00:36:09,062 --> 00:36:11,298 TRANSFER OF CARE TO A MORE 1064 00:36:11,298 --> 00:36:12,799 SPECIALIZED CENTER. 1065 00:36:12,799 --> 00:36:14,201 UNFORTUNATELY, WE LEARNED THAT 1066 00:36:14,201 --> 00:36:18,138 DESPITE THE FACT THAT KYLE OR 1067 00:36:18,138 --> 00:36:19,840 WHITE BLOOD HAS BEEN DOCUMENTED 1068 00:36:19,840 --> 00:36:21,708 SINCE THE TIME OF HIPPOCRATES 1069 00:36:21,708 --> 00:36:23,510 EVEN IN 2024, LYMPHATIC DISEASES 1070 00:36:23,510 --> 00:36:25,212 ARE VERY POORLY UNDERSTOOD BY 1071 00:36:25,212 --> 00:36:27,748 MOST MODERN MEDICAL 1072 00:36:27,748 --> 00:36:28,115 PRACTITIONERS. 1073 00:36:28,115 --> 00:36:29,549 ONCE OUR SON'S CARE WAS 1074 00:36:29,549 --> 00:36:30,951 TRANSFERRED TO THE LEADING 1075 00:36:30,951 --> 00:36:34,254 CHILDREN'S HOSPITAL IN CANADA, 1076 00:36:34,254 --> 00:36:35,655 IT WAS STILL REGULARLY NECESSARY 1077 00:36:35,655 --> 00:36:37,224 TO EDUCATE AND PROVIDE CURRENT 1078 00:36:37,224 --> 00:36:38,525 RELEVANT RESEARCH PAPERS TO THE 1079 00:36:38,525 --> 00:36:39,826 TEAM OF SCIENTISTS TO CARE FOR 1080 00:36:39,826 --> 00:36:41,561 HIM ON A DAILY BASIS. 1081 00:36:41,561 --> 00:36:43,130 HE WAS ADMITTED TODAY A GENERAL 1082 00:36:43,130 --> 00:36:48,568 CACARE FLOOR FOR OVER 50 DAYS IN 1083 00:36:48,568 --> 00:36:50,137 2021 AND THE TEAMS ASSIGNED 1084 00:36:50,137 --> 00:36:51,671 INITIALLY HAD NO IDEA WHAT HIS 1085 00:36:51,671 --> 00:36:52,339 DISEASE ENTAILED. 1086 00:36:52,339 --> 00:36:53,173 AS A RESULT OF OUR EXPERIENCES 1087 00:36:53,173 --> 00:36:54,941 WE FELT IT NECESSARY TO START 1088 00:36:54,941 --> 00:36:56,710 OUR FOUNDATION IN 2022 TO ASSIST 1089 00:36:56,710 --> 00:36:58,445 PATIENTS WITH THESE LYMPHATIC 1090 00:36:58,445 --> 00:37:01,648 DISEASES AND ALSO THEIR FAMILIES 1091 00:37:01,648 --> 00:37:02,215 IN CANADA. 1092 00:37:02,215 --> 00:37:04,184 OUR GOAL IS TO CREATE AWARENESS 1093 00:37:04,184 --> 00:37:05,819 ABOUT LYMPHATIC DISEASE, 1094 00:37:05,819 --> 00:37:07,087 ESPECIALLY COMPLEX LYMPHATIC 1095 00:37:07,087 --> 00:37:08,922 ANOMALIES, AND TO PROMOTE 1096 00:37:08,922 --> 00:37:10,057 EDUCATION FOR THE GENERAL 1097 00:37:10,057 --> 00:37:11,725 POPULATION AND MEDICAL 1098 00:37:11,725 --> 00:37:13,260 COMMUNITY, BUT WHAT WE REALLY 1099 00:37:13,260 --> 00:37:15,495 WANT TO PROVIDE IS HOPE. 1100 00:37:15,495 --> 00:37:17,264 HOPE FOR THE FAMILIES AND 1101 00:37:17,264 --> 00:37:17,898 PATIENTS AS THEY FACE THE 1102 00:37:17,898 --> 00:37:23,303 DISEASE FULL OF UNKNOWNS. 1103 00:37:23,303 --> 00:37:25,472 >> THROUGH THE HARD WORK OF THE 1104 00:37:25,472 --> 00:37:26,773 TEAM AT SICK KIDS IN TORONTO, 1105 00:37:26,773 --> 00:37:28,408 OUR SON WAS LUCKY ENOUGH TO GAIN 1106 00:37:28,408 --> 00:37:31,044 ACCESS TO A NOVEL THERAPEUTIC 1107 00:37:31,044 --> 00:37:31,778 TREATMENT. 1108 00:37:31,778 --> 00:37:34,147 HE'S BEEN RELATIVELY STABLE 1109 00:37:34,147 --> 00:37:35,382 SINCE 2022 AND HIS QUALITY OF 1110 00:37:35,382 --> 00:37:36,716 LIFE HAS IMPROVED DRAMATICALLY 1111 00:37:36,716 --> 00:37:39,352 AS WE SEE IN THE SLIDES HERE. 1112 00:37:39,352 --> 00:37:40,587 WE CANNOT ARTICULATE HOW 1113 00:37:40,587 --> 00:37:41,922 INDEBTED WE ARE FOR THE TIMING 1114 00:37:41,922 --> 00:37:42,989 AND THE COLLABORATIVE EFFORTS 1115 00:37:42,989 --> 00:37:45,792 THAT ASSISTED OUR SON IN HIS 1116 00:37:45,792 --> 00:37:46,827 CARE AND SUBSEQUENT IMPROVEMENT 1117 00:37:46,827 --> 00:37:49,229 AND CONDITION. 1118 00:37:49,229 --> 00:37:50,030 BUT HIS JOURNEY HAS NOT BEEN 1119 00:37:50,030 --> 00:37:51,565 EASY AND THE CHALLENGES THESE 1120 00:37:51,565 --> 00:37:52,566 PATIENTS ENCOUNTER BY THE 1121 00:37:52,566 --> 00:37:53,900 MEDICAL SYSTEM ARE DAUNTING. 1122 00:37:53,900 --> 00:37:55,402 WE WANT TO LET PEOPLE KNOW THE 1123 00:37:55,402 --> 00:37:56,503 CHALLENGE IS WORTH IT. 1124 00:37:56,503 --> 00:37:57,838 OBTAINING A CORRECT DIAGNOSIS 1125 00:37:57,838 --> 00:37:59,339 MAY SEEM OBVIOUS FOR DISEASES 1126 00:37:59,339 --> 00:38:01,641 SUCH AS OUR SON'S, BUT IT IS 1127 00:38:01,641 --> 00:38:02,209 NOT. 1128 00:38:02,209 --> 00:38:03,777 AS RARE DISEASES, THESE ARE 1129 00:38:03,777 --> 00:38:05,312 UNDERSTANDABLY DIAGNOSED AFTER 1130 00:38:05,312 --> 00:38:06,746 AN EXCLUSION OF MORE COMMON 1131 00:38:06,746 --> 00:38:08,448 DISEASES AND IT'S A DRAWN-OUT 1132 00:38:08,448 --> 00:38:09,382 PROCESS AND UNFORTUNATELY IF 1133 00:38:09,382 --> 00:38:11,118 IT'S NOT IDENTIFIED QUICKLY 1134 00:38:11,118 --> 00:38:12,786 ENOUGH, THE CONSEQUENCES ARE 1135 00:38:12,786 --> 00:38:14,421 DIRE FOR THE PATIENT. 1136 00:38:14,421 --> 00:38:15,188 FURTHERMORE, ACCESS TO 1137 00:38:15,188 --> 00:38:16,656 APPROPRIATE CENTERS CAPABLE OF 1138 00:38:16,656 --> 00:38:18,258 CLINICALLY IDENTIFYING, HAVING 1139 00:38:18,258 --> 00:38:19,159 THE CORRECT IMAGING, THE 1140 00:38:19,159 --> 00:38:20,527 APPROPRIATE TESTING FACILITIES 1141 00:38:20,527 --> 00:38:23,130 FOR SAMPLING METHODS IS ALSO 1142 00:38:23,130 --> 00:38:23,563 REALLY CHALLENGING. 1143 00:38:23,563 --> 00:38:25,198 THERE ARE NO LYMPHATIC HOSPITALS 1144 00:38:25,198 --> 00:38:26,366 IN CANADA. 1145 00:38:26,366 --> 00:38:28,335 MOST DISEASES OF THE LYMPH ARE 1146 00:38:28,335 --> 00:38:29,903 CATEGORIZED IN THE GREATER 1147 00:38:29,903 --> 00:38:30,637 MEDICAL COMMUNITY MUCH LIKE THIS 1148 00:38:30,637 --> 00:38:31,972 PANEL IS, AS A SUBSET OF BLOOD 1149 00:38:31,972 --> 00:38:32,572 DISEASE. 1150 00:38:32,572 --> 00:38:35,075 WHEN IN FACT LYMPH IS NOT BLOOD. 1151 00:38:35,075 --> 00:38:36,209 LYMPH HAS ITS OWN UNIQUE 1152 00:38:36,209 --> 00:38:37,911 PROPERTIES AND IS THE MAIN 1153 00:38:37,911 --> 00:38:39,980 CONDUIT OF THE IMMUNE SYSTEM. 1154 00:38:39,980 --> 00:38:42,749 AT SOME POINT, ITS IMPORTANCE IN 1155 00:38:42,749 --> 00:38:43,984 MODERN MEDICINE AND EDUCATION IN 1156 00:38:43,984 --> 00:38:45,185 THE MEDICAL COMMUNITY HAS TO BE 1157 00:38:45,185 --> 00:38:46,286 PROPERLY PRIORITIZED. 1158 00:38:46,286 --> 00:38:48,255 WHEN YOUR PATIENT, WHEN YOU 1159 00:38:48,255 --> 00:38:49,122 GOOGLE LYMPH DISEASE DOCTOR, YOU 1160 00:38:49,122 --> 00:38:50,357 FIND THIS OUT PRETTY QUICKLY. 1161 00:38:50,357 --> 00:38:53,093 THERE ARE NO LYMPHOLOGISTS 1162 00:38:53,093 --> 00:38:54,094 LISTED IN NORTH AMERICA. 1163 00:38:54,094 --> 00:38:55,829 YOU GOOGLE ATLANTA, THE 1164 00:38:55,829 --> 00:38:56,463 LYMPHATIC ASSOCIATION OF NORTH 1165 00:38:56,463 --> 00:38:59,366 AMERICA AND YOU FIND A LOT OF 1166 00:38:59,366 --> 00:39:00,667 ATLANTA DEL RAY BUT WHEN YOU 1167 00:39:00,667 --> 00:39:03,670 FINALLY DO ACCESS THE SITE IT 1168 00:39:03,670 --> 00:39:06,239 APPEARS TO BE DEALING WITH JUST 1169 00:39:06,239 --> 00:39:07,574 CERTIFICATION TO TREAT 1170 00:39:07,574 --> 00:39:07,874 LYMPHEDEMA. 1171 00:39:07,874 --> 00:39:10,310 EVEN IF THE PRIMARY CARE MEDICAL 1172 00:39:10,310 --> 00:39:11,244 DOCTOR SUSPECT LYMPHATIC DISEASE 1173 00:39:11,244 --> 00:39:11,945 PATIENTS ARE LOOKING FOR WHERE 1174 00:39:11,945 --> 00:39:12,612 TO TURN. 1175 00:39:12,612 --> 00:39:14,347 IT IS NOT AS OBVIOUS AS ONE 1176 00:39:14,347 --> 00:39:15,015 WOULD EXPECT. 1177 00:39:15,015 --> 00:39:16,116 EVEN WITHIN THE MEDICAL 1178 00:39:16,116 --> 00:39:16,950 COMMUNITY, EDUCATION ABOUT 1179 00:39:16,950 --> 00:39:18,752 COMPLEX LYMPHATIC ANOMALIES MUST 1180 00:39:18,752 --> 00:39:19,786 ALSO BE IMPROVED. 1181 00:39:19,786 --> 00:39:21,087 OUR SON'S CONDITION SUFFERS FROM 1182 00:39:21,087 --> 00:39:22,689 THE FACT THAT IT WAS AND ALSO IS 1183 00:39:22,689 --> 00:39:26,459 STILL REFERRED TO AS LYMPH FAN 1184 00:39:26,459 --> 00:39:28,528 GEE MATOSIS BY SOME 1185 00:39:28,528 --> 00:39:29,429 PRACTITIONERS, EVEN IN THE NAME 1186 00:39:29,429 --> 00:39:31,231 OF THE PATIENT GROUP SUPPORTING 1187 00:39:31,231 --> 00:39:32,599 THESE PATIENTS, LGDA. 1188 00:39:32,599 --> 00:39:34,935 THIS IS EXTREMELY CONFUSING FOR 1189 00:39:34,935 --> 00:39:36,102 PATIENTS WITH NO MEDICAL 1190 00:39:36,102 --> 00:39:37,070 KNOWLEDGE AND EXPERIENCED 1191 00:39:37,070 --> 00:39:37,404 MEDICAL TEAMS. 1192 00:39:37,404 --> 00:39:39,406 IT'S REALLY IMPORTANT IN 2024 1193 00:39:39,406 --> 00:39:44,411 THE TERMINOLOGY BE STANDARDIZED. 1194 00:39:44,411 --> 00:39:47,147 OUR MAJOR RESOURCE CHALLENGES 1195 00:39:47,147 --> 00:39:48,582 FOR PEOPLE LIVING WITH COMPLEX 1196 00:39:48,582 --> 00:39:50,317 LYMPHATIC ANOMALIES INCLUDE 1197 00:39:50,317 --> 00:39:51,551 OBTAINING ADEQUATELY TRAINED 1198 00:39:51,551 --> 00:39:52,185 MEDICAL PERSONNEL. 1199 00:39:52,185 --> 00:39:53,687 THERE NEEDS TO BE A WAY FOR 1200 00:39:53,687 --> 00:39:57,624 PRIMARY CARE DOCTORS TO MORE 1201 00:39:57,624 --> 00:39:59,159 EASILY ACCESS THE NETWORK OF 1202 00:39:59,159 --> 00:40:00,360 EXPERIENCED TEAMS TO HELP 1203 00:40:00,360 --> 00:40:01,261 PROVIDE CARE FOR PATIENTS. 1204 00:40:01,261 --> 00:40:02,562 IN OUR EXPERIENCE FROM THOSE CON 1205 00:40:02,562 --> 00:40:03,830 BT TACTING OUR FOUNDATION, 1206 00:40:03,830 --> 00:40:07,167 THERE'S BEEN A RESISTANCE FROM 1207 00:40:07,167 --> 00:40:08,168 MEDICAL PROFESSIONALS IN SMALLER 1208 00:40:08,168 --> 00:40:09,135 CENTERS TO MAKE THE REFERRAL TO 1209 00:40:09,135 --> 00:40:10,570 MORE EXPERIENCED CENTERS. 1210 00:40:10,570 --> 00:40:11,871 POSSIBLY FROM NOT HAVING AN 1211 00:40:11,871 --> 00:40:14,341 ESTABLISHED REFERRAL NETWORK IN 1212 00:40:14,341 --> 00:40:14,841 PLACE. 1213 00:40:14,841 --> 00:40:16,243 IF SUCH A REFERRAL NETWORK IS 1214 00:40:16,243 --> 00:40:18,812 FORMULATED BY A REPUTABLE 1215 00:40:18,812 --> 00:40:20,647 ORGANIZATION, AT LEAST IT WOULD 1216 00:40:20,647 --> 00:40:21,414 PROVIDE CREDENCE THAT SUCH 1217 00:40:21,414 --> 00:40:24,217 REFERRALS ARE INDEED POSSIBLE. 1218 00:40:24,217 --> 00:40:24,751 HOWEVER, OBTAINING 1219 00:40:24,751 --> 00:40:25,752 TRANSPORTATION TO SUCH REFERRALS 1220 00:40:25,752 --> 00:40:27,854 IS ALSO VERY CHALLENGING, 1221 00:40:27,854 --> 00:40:30,056 ESPECIALLY IN CANADA, WHERE OUR 1222 00:40:30,056 --> 00:40:31,424 GEOGRAPHY IS SO EXPANSIVE AND 1223 00:40:31,424 --> 00:40:33,260 FLIGHTS ARE VERY EXPENSIVE. 1224 00:40:33,260 --> 00:40:34,661 IDEALLY, DESIGNATED LYMPHATIC 1225 00:40:34,661 --> 00:40:36,329 CENTERS NEED TO EXIST. 1226 00:40:36,329 --> 00:40:38,098 PERHAPS BY PROVIDING DESIGNATION 1227 00:40:38,098 --> 00:40:41,101 FROM AN EXPERT PANEL FOR CENTERS 1228 00:40:41,101 --> 00:40:42,569 EXPERIENCED AND CAPABLE IN 1229 00:40:42,569 --> 00:40:43,303 TREATING COMPLEX LYMPHATIC 1230 00:40:43,303 --> 00:40:44,404 DISEASES. 1231 00:40:44,404 --> 00:40:46,473 >> ADDITIONALLY, IF LYMPHATIC 1232 00:40:46,473 --> 00:40:49,042 DISEASE SUCH AS A COMPLEX 1233 00:40:49,042 --> 00:40:53,280 LYMPHATIC ANOMALY IS SUSPECTED, 1234 00:40:53,280 --> 00:40:55,048 STANDARDIZED MED THOD LOGICAL 1235 00:40:55,048 --> 00:40:56,483 PROCEDURES FOR BLOOD OR KYLE 1236 00:40:56,483 --> 00:40:57,684 SAMPLING AND IDENTIFYING LABS TO 1237 00:40:57,684 --> 00:40:59,019 SEND SUCH SAMPLES TO WOULD 1238 00:40:59,019 --> 00:41:00,920 REALLY GREATLY ASSIST IN 1239 00:41:00,920 --> 00:41:01,588 PROVIDING AN ACCURATE DIAGNOSIS 1240 00:41:01,588 --> 00:41:03,123 TO EARLIER STAGES OF TESTING AND 1241 00:41:03,123 --> 00:41:04,257 PROVIDE PRACTITIONERS WITH 1242 00:41:04,257 --> 00:41:05,458 PROPER DIAGNOSTIC TOOLS. 1243 00:41:05,458 --> 00:41:06,660 MOREOVER, ACCESS TO NOVEL 1244 00:41:06,660 --> 00:41:07,761 MEDICATIONS FOR THE TREATMENT OF 1245 00:41:07,761 --> 00:41:09,529 THESE DISEASES USING THAT 1246 00:41:09,529 --> 00:41:10,597 DIAGNOSTIC DATA IS A REAL MAJOR 1247 00:41:10,597 --> 00:41:11,231 CHALLENGE. 1248 00:41:11,231 --> 00:41:12,899 GREATER AVAILABILITY FROM 1249 00:41:12,899 --> 00:41:13,767 PHARMACEUTICAL COMPANIES TO 1250 00:41:13,767 --> 00:41:14,668 DESIGNATED LYMPHATIC CENTERS 1251 00:41:14,668 --> 00:41:16,002 WOULD OBVIOUSLY BENEFIT PATIENTS 1252 00:41:16,002 --> 00:41:17,470 WITH THESE CONDITIONS. 1253 00:41:17,470 --> 00:41:21,775 MIND YOU, ONCE THE CONDITION IS 1254 00:41:21,775 --> 00:41:23,009 IDENTIFIED, THERE ARE HUGE 1255 00:41:23,009 --> 00:41:24,411 FINANCIAL AND INSURANCE 1256 00:41:24,411 --> 00:41:27,347 CHALLENGES TO THESE PATIENTS. 1257 00:41:27,347 --> 00:41:29,049 FINALLY, GAINING ACCESS TO 1258 00:41:29,049 --> 00:41:29,983 SUPPORTIVE RESOURCES WHETHER 1259 00:41:29,983 --> 00:41:31,951 THEY BE EDUCATIONAL, 1260 00:41:31,951 --> 00:41:33,420 NUTRITIONAL, PSYCHOLOGICAL OR 1261 00:41:33,420 --> 00:41:34,921 REHABILITATIVE, IT'S NECESSARY 1262 00:41:34,921 --> 00:41:35,955 FOR THESE PATIENTS, AND 1263 00:41:35,955 --> 00:41:36,890 CAREGIVING SUPPORTS, THE BURDEN 1264 00:41:36,890 --> 00:41:38,925 THAT IS PLACED ON THE FAMILIES 1265 00:41:38,925 --> 00:41:40,927 BY THESE TYPICAL CHILDHOOD 1266 00:41:40,927 --> 00:41:42,629 TEASES IS GREAT. 1267 00:41:42,629 --> 00:41:43,830 BALANCING WORK AS WELL AS HOME 1268 00:41:43,830 --> 00:41:45,465 CARE FOR THE OTHER SIBLINGS IN A 1269 00:41:45,465 --> 00:41:46,599 FAMILY IS SO HARD WHEN YOU HAVE 1270 00:41:46,599 --> 00:41:48,134 THIS DISEASE, EVEN IF SUCH 1271 00:41:48,134 --> 00:41:51,037 SUPPORTS EXIST. 1272 00:41:51,037 --> 00:41:53,440 >> OUR TOP THREE WISHES FOR 1273 00:41:53,440 --> 00:41:55,408 PATIENT AND FAMILIES TOUCHED BY 1274 00:41:55,408 --> 00:41:56,409 LYMPHATIC DISEASE. 1275 00:41:56,409 --> 00:41:57,911 NUMBER ONE, INCREASED EDUCATION 1276 00:41:57,911 --> 00:41:59,579 OF LYMPHATIC DISEASES WITHIN THE 1277 00:41:59,579 --> 00:42:01,981 MEDICAL EDUCATION SYSTEM. 1278 00:42:01,981 --> 00:42:03,183 IDEALLY THIS WOULD BE REFLECTED 1279 00:42:03,183 --> 00:42:05,952 IN HAVING DESIGNATED CENTERS FOR 1280 00:42:05,952 --> 00:42:06,986 TREATMENT OF THE DISORDERS AND 1281 00:42:06,986 --> 00:42:09,923 TO STOP USING LIMB FAN JOE CYST 1282 00:42:09,923 --> 00:42:10,690 TERMINOLOGY. 1283 00:42:10,690 --> 00:42:11,624 ADDITIONALLY FOR THOSE INVOLVED 1284 00:42:11,624 --> 00:42:13,860 IN THE TREATMENT OF LYMPHATIC 1285 00:42:13,860 --> 00:42:16,396 MALFORMATIONS WHICH OCCUR ONE IN 1286 00:42:16,396 --> 00:42:17,497 EVERY 4,000 LIVE BIRTHS, 1287 00:42:17,497 --> 00:42:20,133 COMMUNICATING WITH THE PATIENTSS 1288 00:42:20,133 --> 00:42:21,401 OF THOSE TREATED THAT THERE MAY 1289 00:42:21,401 --> 00:42:23,103 BE POSSIBILITY OF MORE EXTENSIVE 1290 00:42:23,103 --> 00:42:24,537 UNDERLYING DISEASE. 1291 00:42:24,537 --> 00:42:26,473 NUMBER TWO, INCREASED FUNDING OF 1292 00:42:26,473 --> 00:42:28,007 RESEARCH OF LYMPHATIC DISEASES 1293 00:42:28,007 --> 00:42:31,344 ESPECIALLY RARE DISEASES, AND 1294 00:42:31,344 --> 00:42:32,512 THE DEVELOPMENT OF AN ALGORITHM 1295 00:42:32,512 --> 00:42:33,613 OR CLINICAL PRACTICE GUIDELINE 1296 00:42:33,613 --> 00:42:35,014 TO BE USED BY PRIMARY CARE 1297 00:42:35,014 --> 00:42:36,449 PHYSICIANS WITH RESPECT TO 1298 00:42:36,449 --> 00:42:37,784 PEDIATRIC NON-TYPICAL 1299 00:42:37,784 --> 00:42:40,286 PRESENTATIONS OF PULMONARY 1300 00:42:40,286 --> 00:42:42,455 EFFUSIONS, CHYLOTHORAX AND 1301 00:42:42,455 --> 00:42:44,290 ABDOMINAL EDEMA SO THAT REFERRAL 1302 00:42:44,290 --> 00:42:45,658 CAN BE INITIATED. 1303 00:42:45,658 --> 00:42:47,327 AND FINALLY, INTERNATIONAL 1304 00:42:47,327 --> 00:42:49,362 MEDICALLY TRAINED PATIENT 1305 00:42:49,362 --> 00:42:50,764 LIAISON GROUP TO ADVOCATE ON 1306 00:42:50,764 --> 00:42:54,467 BEHALF OF PATIENTS WITH 1307 00:42:54,467 --> 00:42:55,635 LYMPHATIC DISEASE SO THAT 1308 00:42:55,635 --> 00:42:57,303 WORLDWIDE A MEDICAL ADVOCATE CAN 1309 00:42:57,303 --> 00:42:58,905 ASSIST CAREGIVERS WITH EDUCATING 1310 00:42:58,905 --> 00:43:00,206 MEDICAL TEAMS IF THE LYMPHATIC 1311 00:43:00,206 --> 00:43:01,941 DISEASE IS INDEED SUSPECTED. 1312 00:43:01,941 --> 00:43:03,143 THANK YOU SO MUCH FOR YOUR TIME 1313 00:43:03,143 --> 00:43:06,279 AND WE LOOK FORWARD TO YOUR 1314 00:43:06,279 --> 00:43:06,846 QUESTIONS. 1315 00:43:06,846 --> 00:43:08,381 >> THANK YOU VERY MUCH, JEN AND 1316 00:43:08,381 --> 00:43:12,218 KEVIN, WITH THIS POWERFUL 1317 00:43:12,218 --> 00:43:13,319 INFORMATION YOU SHARED WITH US, 1318 00:43:13,319 --> 00:43:15,388 AND THEN WE'LL BE TALKING ABOUT 1319 00:43:15,388 --> 00:43:17,690 IT IN THE DISCUSSION PART. 1320 00:43:17,690 --> 00:43:19,159 SO WE ARE GOING TO MOVE TO THE 1321 00:43:19,159 --> 00:43:21,561 NEXT PRESENTER, CHRISTY COLLINS, 1322 00:43:21,561 --> 00:43:27,567 PRESIDENT OF THE MICROCEPHALY 1323 00:43:27,567 --> 00:43:28,401 CAPILLARY MALFORMATION. 1324 00:43:28,401 --> 00:43:28,635 CHRISTY? 1325 00:43:28,635 --> 00:43:28,935 >> HI. 1326 00:43:28,935 --> 00:43:30,136 THANK YOU. 1327 00:43:30,136 --> 00:43:34,441 MY NAME IS CHRISTY COLLINS. 1328 00:43:34,441 --> 00:43:40,980 MY DAUGHTER WITH THE SYNDROME IS 1329 00:43:40,980 --> 00:43:41,448 15. 1330 00:43:41,448 --> 00:43:43,516 I'LL JUST GIVE YOU A LITTLE 1331 00:43:43,516 --> 00:43:43,917 HISTORY. 1332 00:43:43,917 --> 00:43:47,253 IT WAS FIRST DESCRIBED IN 1997 1333 00:43:47,253 --> 00:43:51,191 AND THAT'S SIGNIFICANT BECAUSE 1334 00:43:51,191 --> 00:43:52,392 OUR POPULATION SKEWS YOUNG FOR 1335 00:43:52,392 --> 00:43:57,263 THAT REASON. 1336 00:43:57,263 --> 00:43:58,465 PEOPLE BORN BEFORE THAT ARE LESS 1337 00:43:58,465 --> 00:44:00,867 LIKELY TO HAVE A DIAGNOSIS. 1338 00:44:00,867 --> 00:44:07,373 SOME OF THOSE PEOPLE WILL HAVE A 1339 00:44:07,373 --> 00:44:10,910 CRIPPLE -- DIAGNOSIS. 1340 00:44:10,910 --> 00:44:11,945 OUR ORGANIZATION WAS FOUNDED 1341 00:44:11,945 --> 00:44:13,379 WHEN MY DAUGHTER WAS ABOUT 1342 00:44:13,379 --> 00:44:16,082 1-YEAR-OLD IN 2010. 1343 00:44:16,082 --> 00:44:18,418 THE PROS GENE DISCOVERIES FOR 1344 00:44:18,418 --> 00:44:24,524 PIK3CA HAPPENED AROUND 2012, AND 1345 00:44:24,524 --> 00:44:27,327 THAT PUTS US IN THE GROUP OF 1346 00:44:27,327 --> 00:44:31,965 CONDITIONS ALONG WITH CLOVES 1347 00:44:31,965 --> 00:44:36,269 SYNDROME AND CRIPPLE TRINANI 1348 00:44:36,269 --> 00:44:37,570 SYNDROME WHICH BOTH HAVE 1349 00:44:37,570 --> 00:44:38,705 LYMPHATIC INVOLVEMENT AS MORE OF 1350 00:44:38,705 --> 00:44:39,672 A DEFINING FEATURE. 1351 00:44:39,672 --> 00:44:43,309 AND MOST OF WHAT I KNOW ABOUT 1352 00:44:43,309 --> 00:44:48,982 LYMPHATIC INVOLVEMENT IS FROM 1353 00:44:48,982 --> 00:44:49,816 FOLLOWING THOSE PATIENT 1354 00:44:49,816 --> 00:44:52,852 COMMUNITIES AND FOLLOWING 1355 00:44:52,852 --> 00:44:56,890 VASCULAR ANOMALIES, MEDICAL AND 1356 00:44:56,890 --> 00:45:00,793 RESEARCH MEETINGS. 1357 00:45:00,793 --> 00:45:01,928 OUR CONDITION HAS HAD A FEW 1358 00:45:01,928 --> 00:45:02,795 NAMES OVER THE YEARS AND NOW 1359 00:45:02,795 --> 00:45:10,570 IT'S USUALLY CALLED M CAP. 1360 00:45:10,570 --> 00:45:12,472 FOR THIS PRESENTATION I USUALLY 1361 00:45:12,472 --> 00:45:13,673 SAY M-CM BUT IT'S ALL THE SAME 1362 00:45:13,673 --> 00:45:14,841 CONDITION. 1363 00:45:14,841 --> 00:45:16,576 WE MAINTAIN AN INTERNATIONAL 1364 00:45:16,576 --> 00:45:20,179 CONTACT REGISTRY WITH ABOUT 400 1365 00:45:20,179 --> 00:45:21,247 PATIENTS IN IT, A LITTLE LESS 1366 00:45:21,247 --> 00:45:29,222 RIGHT NOW. 1367 00:45:29,222 --> 00:45:31,791 I KNOW SOME ABOUT THE LYMPHATIC 1368 00:45:31,791 --> 00:45:33,059 INVOLVEMENT IN OUR POPULATION 1369 00:45:33,059 --> 00:45:33,927 FROM INTERACTING WITH PATIENTS 1370 00:45:33,927 --> 00:45:35,962 AS A PEER. 1371 00:45:35,962 --> 00:45:39,265 BUT I ALSO EMAILED OUR CONTACT 1372 00:45:39,265 --> 00:45:41,868 REGISTRY AND SOLICITED PEOPLE'S 1373 00:45:41,868 --> 00:45:43,636 FEEDBACK ABOUT THEIR EXPERIENCE 1374 00:45:43,636 --> 00:45:47,440 WITH LYMPHATIC INVOLVEMENT, AND 1375 00:45:47,440 --> 00:45:54,914 SO I HOPE TO BRING THOSE INTO TL 1376 00:45:54,914 --> 00:45:55,682 HERE NOW. 1377 00:45:55,682 --> 00:45:57,650 JUST A LITTLE BIT ABOUT OUR 1378 00:45:57,650 --> 00:45:57,917 SYNDROME. 1379 00:45:57,917 --> 00:46:02,355 I'M NOT GOING TO FULLY DESCRIBE 1380 00:46:02,355 --> 00:46:03,523 IT BECAUSE MOSTLY I WANT TO TALK 1381 00:46:03,523 --> 00:46:06,059 ABOUT THE LYMPHATIC ASPECTS. 1382 00:46:06,059 --> 00:46:12,398 IT'S A PIK3CA-RELATED PROS 1383 00:46:12,398 --> 00:46:14,934 CONDITION, AND THE DEFINING 1384 00:46:14,934 --> 00:46:16,603 FEATURE IS BRAIN OVERGROWTH, AND 1385 00:46:16,603 --> 00:46:20,873 OUR PATIENTS OFTEN HAVE 1386 00:46:20,873 --> 00:46:22,408 HYDROCEPHALUS, PROGRESSIVE 1387 00:46:22,408 --> 00:46:24,744 CEREBELLAR OVERGROWTH, WHERE 1388 00:46:24,744 --> 00:46:28,548 THEY END UP HAVING A KIND OF KEY 1389 00:46:28,548 --> 00:46:30,850 ARI MALFORMATION. 1390 00:46:30,850 --> 00:46:33,152 CHIARI TECHNICALLY IS COU CONGEL 1391 00:46:33,152 --> 00:46:34,354 BUT WHAT HAPPENS IN OUR PATIENTS 1392 00:46:34,354 --> 00:46:35,955 CAN BE PROGRESSIVE. 1393 00:46:35,955 --> 00:46:39,025 IT SOMETIMES ISN'T THERE AT 1394 00:46:39,025 --> 00:46:41,427 BIRTH. 1395 00:46:41,427 --> 00:46:43,196 THEN THERE WILL BE MIGRATION 1396 00:46:43,196 --> 00:46:47,634 DEFECTS SOMETIMES AND VERY 1397 00:46:47,634 --> 00:46:50,203 COGNITIVE DISABILITIES. 1398 00:46:50,203 --> 00:46:52,905 THOSE EFFECTS CAN RANGE FROM 1399 00:46:52,905 --> 00:46:54,173 SIMPLE LEARNING DISABILITIES TO 1400 00:46:54,173 --> 00:46:56,376 MORE SEVERE DEVELOPMENTAL 1401 00:46:56,376 --> 00:46:57,543 DISABILITY. 1402 00:46:57,543 --> 00:47:02,181 SO THE PICTURE THAT I PUT ON 1403 00:47:02,181 --> 00:47:09,489 THIS SLIDE SHOWS THE SAIR CERER 1404 00:47:09,489 --> 00:47:13,860 OVERGROWTH PROGRESSING OVER 1405 00:47:13,860 --> 00:47:14,394 TIME. 1406 00:47:14,394 --> 00:47:15,395 THIS CREATES A COUPLE OF 1407 00:47:15,395 --> 00:47:16,295 PROBLEMS IN THE BRAIN. 1408 00:47:16,295 --> 00:47:18,264 IT'S THOUGHT TO CREATE 1409 00:47:18,264 --> 00:47:22,535 OBSTRUCTIVE HYDROCEPHALUS. 1410 00:47:22,535 --> 00:47:24,737 THE CHIARI MALFORMATION ITSELF 1411 00:47:24,737 --> 00:47:25,872 SOMETIMES REQUIRES SURGERY, AND 1412 00:47:25,872 --> 00:47:29,575 IT CAN ALSO IMPACT THE SPINAL 1413 00:47:29,575 --> 00:47:34,347 CORD FOR PEOPLE WHO GET POCKETS 1414 00:47:34,347 --> 00:47:37,050 OF FLUID IN THE SPINAL CORD. 1415 00:47:37,050 --> 00:47:41,954 AND THEN FURTHER DOWN WITH THE 1416 00:47:41,954 --> 00:47:43,322 CNS INVOLVEMENT, OUR PATIENTS 1417 00:47:43,322 --> 00:47:44,557 OFTEN WILL HAVE A TETHERED CORD 1418 00:47:44,557 --> 00:47:47,060 AS WELL, AND THOSE ARE ALL SORT 1419 00:47:47,060 --> 00:47:50,329 OF PART OF THIS SYSTEM OF 1420 00:47:50,329 --> 00:47:52,598 ABNORMALITIES THAT DOMINATES THE 1421 00:47:52,598 --> 00:47:54,600 DEFINITION OF OUR CONDITION. 1422 00:47:54,600 --> 00:47:57,837 AND GENERALLY, COMPARED TO THE 1423 00:47:57,837 --> 00:48:00,873 OTHER PROS CONDITIONS LIKE 1424 00:48:00,873 --> 00:48:02,442 CLOVES AND ET AND EVEN SOME OF 1425 00:48:02,442 --> 00:48:06,946 THE LESS SIMILAR ONES, WE 1426 00:48:06,946 --> 00:48:09,549 GENERALLY HAVE MORE MILDLY 1427 00:48:09,549 --> 00:48:15,655 ACTIVATING MUTATIONS WITH HIGHER 1428 00:48:15,655 --> 00:48:17,490 ALLELE FREQUENCIES SO IT AFFECTS 1429 00:48:17,490 --> 00:48:18,891 MORE OF THE BODY, SO THE DISEASE 1430 00:48:18,891 --> 00:48:21,294 EFFECTS ARE LESS FOCAL AND MORE 1431 00:48:21,294 --> 00:48:29,135 DIFFUSE. 1432 00:48:29,135 --> 00:48:32,071 SO THIS WAS A LITTLE BIT OF A 1433 00:48:32,071 --> 00:48:33,639 CONUNDRUM TO ME HOW I WOULD 1434 00:48:33,639 --> 00:48:34,907 PRESENT THIS BECAUSE LYMPHATIC 1435 00:48:34,907 --> 00:48:39,178 INVOLVEMENT IS NOT CHARACTERIZED 1436 00:48:39,178 --> 00:48:40,847 IN MCAP. 1437 00:48:40,847 --> 00:48:43,649 ON OUR WEBSITE, WE HAVE A 10 TO 1438 00:48:43,649 --> 00:48:45,051 12-PAGE SYNDROME DESCRIPTION AND 1439 00:48:45,051 --> 00:48:49,422 THERE'S NO MENTION EVER OF LYMPC 1440 00:48:49,422 --> 00:48:50,757 INVOLVEMENT IN IT, BUT I KNOW 1441 00:48:50,757 --> 00:48:52,024 FROM COMMUNITY REPORTS THAT ARE 1442 00:48:52,024 --> 00:48:54,627 SOME PEOPLE DO HAVE LYMPHATIC 1443 00:48:54,627 --> 00:48:56,162 INVOLVEMENT, AND I'VE LISTED 1444 00:48:56,162 --> 00:49:00,233 SOME OF THE INVOLVEMENT THAT I'M 1445 00:49:00,233 --> 00:49:03,603 FAMILIAR WITH HERE. 1446 00:49:03,603 --> 00:49:07,940 IN ADDITION TO THIS SPECIFIC 1447 00:49:07,940 --> 00:49:12,545 LYMPHATIC DEFECTS THAT PEOPLE 1448 00:49:12,545 --> 00:49:14,280 DESCRIBE, WE HAVE MANY REPORTS 1449 00:49:14,280 --> 00:49:15,348 OF CELLULITIS AND WE HAVE 1450 00:49:15,348 --> 00:49:17,483 REPORTS OF PRENATAL PLEURAL 1451 00:49:17,483 --> 00:49:19,786 EFFUSION, AND THEN WE ALSO HAVE 1452 00:49:19,786 --> 00:49:21,387 PLEURAL EFFUSION AS AN 1453 00:49:21,387 --> 00:49:22,655 INCIDENTAL FINDING ON IMAGING, 1454 00:49:22,655 --> 00:49:24,757 AND THEN MANY PATIENTS HAVE 1455 00:49:24,757 --> 00:49:29,262 EXTREMELY LARGE TONSILS. 1456 00:49:29,262 --> 00:49:30,997 AS I WAS TRYING TO FIGURE OUT 1457 00:49:30,997 --> 00:49:33,766 HOW I WOULD DESCRIBE LYMPHATIC 1458 00:49:33,766 --> 00:49:35,368 INVOLVEMENT IN A DISEASE THAT 1459 00:49:35,368 --> 00:49:36,402 PRESUMABLY DOESN'T HAVE 1460 00:49:36,402 --> 00:49:37,703 LYMPHATIC INVOLVEMENT, I 1461 00:49:37,703 --> 00:49:40,072 ACCIDENTALLY OPENED UP THIS 1462 00:49:40,072 --> 00:49:42,742 PAPER THAT SPECIFICALLY SAYS 1463 00:49:42,742 --> 00:49:44,210 THAT MCAP DOES NOT HAVE 1464 00:49:44,210 --> 00:49:45,545 LYMPHATIC INVOLVEMENT, AND THEN 1465 00:49:45,545 --> 00:49:47,980 GOES ON TO DESCRIBE FOUR 1466 00:49:47,980 --> 00:49:49,182 PATIENTS WITH LYMPHATIC 1467 00:49:49,182 --> 00:49:50,416 INVOLVEMENT. 1468 00:49:50,416 --> 00:49:56,789 SO THIS PAPER MADE MY POINT FERT 1469 00:49:56,789 --> 00:49:57,390 PERFECTLY. 1470 00:49:57,390 --> 00:49:58,658 MY EXPERIENCE AS AN ADVOCATE 1471 00:49:58,658 --> 00:50:03,596 WITH THIS IS THAT I'M VERY 1472 00:50:03,596 --> 00:50:04,497 FAMILIAR WITH THE PROBLEMS 1473 00:50:04,497 --> 00:50:07,867 CAUSED BY LYMPHATIC INVOLVEMENT 1474 00:50:07,867 --> 00:50:10,503 IN THE OTHER PROS PATIENT 1475 00:50:10,503 --> 00:50:12,038 COMMUNITIES AND WHAT AN 1476 00:50:12,038 --> 00:50:14,507 INCREDIBLE CHALLENGE IT IS FOR 1477 00:50:14,507 --> 00:50:15,908 ALL THE REASONS THAT THE OTHER 1478 00:50:15,908 --> 00:50:16,943 ADVOCATES HAVE ALREADY LAID OUT 1479 00:50:16,943 --> 00:50:19,145 SO WELL. 1480 00:50:19,145 --> 00:50:24,684 AND I WORRY A LOT THAT OUR 1481 00:50:24,684 --> 00:50:28,855 PATIENTS HAVE THIS SORT OF 1482 00:50:28,855 --> 00:50:31,824 SUBCLINICALLY THAT'S GOING TO 1483 00:50:31,824 --> 00:50:33,125 EMERGE AS A BIGGER CLINICAL 1484 00:50:33,125 --> 00:50:36,329 PROBLEM AS THEY REACH ADULTHOOD 1485 00:50:36,329 --> 00:50:38,097 AND NO LONGER HAVE ACCESS TO 1486 00:50:38,097 --> 00:50:45,504 PEDIATRIC SPECIALTY CARE. 1487 00:50:45,504 --> 00:50:49,208 SO I'M JUST GOING TO DESCRIBE 1488 00:50:49,208 --> 00:50:49,575 TWO PATIENTS. 1489 00:50:49,575 --> 00:50:51,611 I INTERVIEWED THE FIRST ONE, THE 1490 00:50:51,611 --> 00:50:53,412 CAREGIVER FOR THIS YOUNG MAN. 1491 00:50:53,412 --> 00:50:57,984 AND THEN THE SECOND ONE IS A 1492 00:50:57,984 --> 00:51:02,922 MOTHER I EMAILED WITH, AND I'VE 1493 00:51:02,922 --> 00:51:05,491 KNOWN HER FOR A FEW YEARS. 1494 00:51:05,491 --> 00:51:09,028 SO THE YOUNG MAN IS UNUSUAL IN 1495 00:51:09,028 --> 00:51:14,734 OUR POPULATION IN THAT HE WAS 1496 00:51:14,734 --> 00:51:16,335 DIAGNOSED WITH LYMPHEDEMA IN 1497 00:51:16,335 --> 00:51:18,771 FOUR LIMBS IN INFANCY. 1498 00:51:18,771 --> 00:51:23,943 HE HAD NO DIAGNOSIS AT FIRST, 1499 00:51:23,943 --> 00:51:25,978 AND THEN HYDROCEPHALUS TREATMENT 1500 00:51:25,978 --> 00:51:30,449 SENT HIM TO BIG CHILDREN'S 1501 00:51:30,449 --> 00:51:33,753 HOSPITAL, AND THEY REFERRED HIM 1502 00:51:33,753 --> 00:51:36,489 TO A LYMPHEDEMA CLINIC. 1503 00:51:36,489 --> 00:51:38,858 HIS EXPERIENCE AT THAT TIME WAS 1504 00:51:38,858 --> 00:51:43,195 THAT THEY HAD A LOO LONG WAIT FA 1505 00:51:43,195 --> 00:51:43,629 THERAPIST. 1506 00:51:43,629 --> 00:51:44,864 INSURANCE ONLY COVERED 8 WEEKS 1507 00:51:44,864 --> 00:51:47,500 OF TREATMENT, AND HE COULDN'T 1508 00:51:47,500 --> 00:51:48,834 TOLERATE THE GARMENTS AND THE 1509 00:51:48,834 --> 00:51:49,435 WRAPPING. 1510 00:51:49,435 --> 00:51:50,803 HE HATED THEM. 1511 00:51:50,803 --> 00:51:53,739 AND THEN HE GREW OUT OF THEM AND 1512 00:51:53,739 --> 00:51:55,608 THEY JUST DIDN'T USE -- THEY 1513 00:51:55,608 --> 00:51:57,677 DIDN'T USE THE GARMENTS OR THE 1514 00:51:57,677 --> 00:52:00,680 WRAPPING. 1515 00:52:00,680 --> 00:52:05,818 AND HIS CAREGIVERS WERE TOLD 1516 00:52:05,818 --> 00:52:07,119 THAT -- HIS PARENTS, THAT AS HE 1517 00:52:07,119 --> 00:52:09,155 BECAME ACTIVE, THE LYMPHEDEMA 1518 00:52:09,155 --> 00:52:10,690 WOULD LESSEN, AND THAT ENDED UP 1519 00:52:10,690 --> 00:52:12,191 BEING TRUE. 1520 00:52:12,191 --> 00:52:14,827 SO HE WAS NOT REALLY GETTING ANY 1521 00:52:14,827 --> 00:52:17,997 KIND OF ACTIVE TREATMENT FOR 1522 00:52:17,997 --> 00:52:21,133 MANY YEARS, AND THEN AT AGE 15, 1523 00:52:21,133 --> 00:52:24,203 ORTHOPEDIC PROBLEMS REDUCED HIS 1524 00:52:24,203 --> 00:52:26,706 ACTIVITY LEVEL, AND THE FAMILY 1525 00:52:26,706 --> 00:52:32,278 SOUGHT OUT TREATMENT AGAIN. 1526 00:52:32,278 --> 00:52:34,046 AND IN THIS INTERVAL, THEY NOW 1527 00:52:34,046 --> 00:52:36,582 HAD ACCESS TO A ROBUST 1528 00:52:36,582 --> 00:52:38,184 LYMPHEDEMA CLINIC AND THEY NO 1529 00:52:38,184 --> 00:52:40,686 LONGER HAVE THIS RIDICULOUS 1530 00:52:40,686 --> 00:52:45,558 8-WEEK INSURANCE LIMIT. 1531 00:52:45,558 --> 00:52:49,261 AND HE NOW RECEIVES MANUAL LYMPH 1532 00:52:49,261 --> 00:52:50,863 DRAINAGE TWO TIMES A WEEK, 1533 00:52:50,863 --> 00:52:51,864 COMPRESSION, VIBRATION PLATES 1534 00:52:51,864 --> 00:52:54,033 THERAPY, PHYSICAL THERAPY, 1535 00:52:54,033 --> 00:52:56,502 OCCUPATIONAL THERAPY, AND HE HAS 1536 00:52:56,502 --> 00:52:58,371 A PUMP THAT TREATS HIS TRUNK AND 1537 00:52:58,371 --> 00:53:03,409 LEGS. 1538 00:53:03,409 --> 00:53:04,677 RECENTLY HE HAD ORTHOPEDIC 1539 00:53:04,677 --> 00:53:06,545 SURGERY, WHICH TRIGGERED A 1540 00:53:06,545 --> 00:53:08,581 DRAMATIC AGGRAVATION OF HIS 1541 00:53:08,581 --> 00:53:10,016 CONDITION, AND BECAUSE HE WAS 1542 00:53:10,016 --> 00:53:11,917 ALL SET UP WITH THIS CARE, HE 1543 00:53:11,917 --> 00:53:15,721 WAS ABLE TO BE TREATED AT HOME 1544 00:53:15,721 --> 00:53:16,989 WITH THIS PUMP AND THE 1545 00:53:16,989 --> 00:53:18,190 THERAPISTS THAT HE ALREADY HAD 1546 00:53:18,190 --> 00:53:23,929 IN PLACE, WHICH WAS A TREMENDOUS 1547 00:53:23,929 --> 00:53:26,399 BENEFIT, HEARING THE STORY, IT 1548 00:53:26,399 --> 00:53:28,501 WOULD HAVE BEEN DEVASTATING TO 1549 00:53:28,501 --> 00:53:31,804 HAVE TO MOVE THIS PATIENT IN 1550 00:53:31,804 --> 00:53:37,977 THIS CONDITION THAT HE WAS IN. 1551 00:53:37,977 --> 00:53:39,211 SO I THOUGHT THIS STORY WAS 1552 00:53:39,211 --> 00:53:42,782 INTERESTING BECAUSE IT DESCRIBES 1553 00:53:42,782 --> 00:53:45,451 THE LIMITATIONS ON CARE AND 1554 00:53:45,451 --> 00:53:46,852 INSURANCE COVERAGE, AND THEN HOW 1555 00:53:46,852 --> 00:53:48,387 MUCH THAT WAS TRANSFORMrd BY 1556 00:53:48,387 --> 00:53:50,322 THEIR EASY ACCESS TO A ROBUST 1557 00:53:50,322 --> 00:53:52,725 CLINIC. 1558 00:53:52,725 --> 00:53:54,393 THE OTHER PATIENT I WANTED TO 1559 00:53:54,393 --> 00:53:58,197 TELL YOU ABOUT IS CURRENTLY A 1560 00:53:58,197 --> 00:54:00,733 5-YEAR-OLD GIRL, AND THIS GIRL 1561 00:54:00,733 --> 00:54:02,968 IS A LOT LIKE MY GIRL, OR SHE 1562 00:54:02,968 --> 00:54:04,770 LOOKS A LOT LIKE MY GIRL TO ME, 1563 00:54:04,770 --> 00:54:07,139 BUT YOUNGER. 1564 00:54:07,139 --> 00:54:11,177 AND SHE HAS BIG PUFFY LEGS, AND 1565 00:54:11,177 --> 00:54:16,916 THIS IS VERY COMMON IN OUR 1566 00:54:16,916 --> 00:54:18,384 POPULATION, AND IT'S GENERALLY 1567 00:54:18,384 --> 00:54:22,888 THOUGHT TO BE OVERGROWTH. 1568 00:54:22,888 --> 00:54:25,391 I KNOW IN OUR CASE, IT'S ALWAYS 1569 00:54:25,391 --> 00:54:27,927 A QUESTION WE ALWAYS WONDER IF 1570 00:54:27,927 --> 00:54:30,262 THERE IS LYMPHATIC INVOLVEMENT. 1571 00:54:30,262 --> 00:54:33,265 SO THIS GIRL IS ACTUALLY SEEN -- 1572 00:54:33,265 --> 00:54:38,037 BOTH OF THESE PATIENTS ARE SEEN 1573 00:54:38,037 --> 00:54:41,107 AT A SOPHISTICATED VASCULAR 1574 00:54:41,107 --> 00:54:42,208 ANOMALIES CLINIC. 1575 00:54:42,208 --> 00:54:44,510 THE MOM, THEY HAD PLEURAL 1576 00:54:44,510 --> 00:54:50,316 EFFUSION A AT A 20 WEEK SCAN. 1577 00:54:50,316 --> 00:54:51,650 THIS CHILD HAS HAD MULTIPLE 1578 00:54:51,650 --> 00:54:54,620 HOSPITALIZATIONINGS DUE TO 1579 00:54:54,620 --> 00:54:56,021 HOSPITALIZATIONS DUE TO 1580 00:54:56,021 --> 00:54:59,125 CELLULITIS, WHICH I DIDN'T KNOW 1581 00:54:59,125 --> 00:55:00,559 ABOUT UNTIL THIS MEETING. 1582 00:55:00,559 --> 00:55:02,061 THEIR DOCTOR RECOMMENDED 1583 00:55:02,061 --> 00:55:03,295 LYMPHATIC WRAPPING AND MASSAGE. 1584 00:55:03,295 --> 00:55:04,630 THE FAMILY DECLINED AND THE 1585 00:55:04,630 --> 00:55:06,365 FAMILY ALSO DECLINED LYMPHATIC 1586 00:55:06,365 --> 00:55:10,035 IMAGING. 1587 00:55:10,035 --> 00:55:12,638 IT IS UNCLEAR -- IT'S NOT THAT 1588 00:55:12,638 --> 00:55:14,306 THIS FAMILY IS NEGLIGENT. 1589 00:55:14,306 --> 00:55:16,308 IT'S YO UNCLEAR TO THIS FAMILY O 1590 00:55:16,308 --> 00:55:17,843 IS ALSO DEALING WITH LOTS OF 1591 00:55:17,843 --> 00:55:21,680 OTHER MEDICAL PROBLEMS, THAT 1592 00:55:21,680 --> 00:55:24,350 THESE SCANS AND TREATMENTS ARE 1593 00:55:24,350 --> 00:55:32,191 REALLY NEEDED. 1594 00:55:32,191 --> 00:55:34,260 SO I WAS TRYING TO THINK OF WHAT 1595 00:55:34,260 --> 00:55:35,361 CHALLENGES ARE REALLY SPECIFIC 1596 00:55:35,361 --> 00:55:38,531 TO OUR POPULATION BECAUSE I KNEW 1597 00:55:38,531 --> 00:55:42,034 THAT OTHER GROUPS WITH MORE -- 1598 00:55:42,034 --> 00:55:47,072 WHERE LMI IS M LYMPHEDEMA IS MOL 1599 00:55:47,072 --> 00:55:48,674 TO THEIR CONDITION WOULD BE 1600 00:55:48,674 --> 00:55:49,308 COVERING SPECIFIC THINGS. 1601 00:55:49,308 --> 00:55:50,876 I THINK FOR US, A BIG PROBLEM IS 1602 00:55:50,876 --> 00:55:53,279 THAT OUR SYNDROME IS COMPLEX, 1603 00:55:53,279 --> 00:55:54,580 VARIABLE, AND POORLY 1604 00:55:54,580 --> 00:56:00,052 CHARACTERIZED. 1605 00:56:00,052 --> 00:56:01,554 OUR PATIENTS HAVE AUTISM 1606 00:56:01,554 --> 00:56:03,189 DIAGNOSES, THEY HAVE 1607 00:56:03,189 --> 00:56:04,223 DEVELOPMENTAL DISABILITY, MANY 1608 00:56:04,223 --> 00:56:06,025 PATIENTS ARE NON-VERBAL AND EVEN 1609 00:56:06,025 --> 00:56:09,695 WHEN THEY ARE VERBAL, SOMETIMES 1610 00:56:09,695 --> 00:56:11,163 THEIR COMMUNICATION IS STILL 1611 00:56:11,163 --> 00:56:12,031 UNRELIABLE. 1612 00:56:12,031 --> 00:56:15,234 SO IT IS MUCH HARDER TO ASSESS A 1613 00:56:15,234 --> 00:56:17,036 PATIENT LIKE THIS THAT CAN'T 1614 00:56:17,036 --> 00:56:18,070 TELL YOU HOW THEY'RE FEELING. 1615 00:56:18,070 --> 00:56:19,471 I'VE HEARD FROM MANY PATIENTS 1616 00:56:19,471 --> 00:56:21,974 THAT THEY DON'T TOLERATE 1617 00:56:21,974 --> 00:56:22,875 COMPRESSION. 1618 00:56:22,875 --> 00:56:27,112 TWO PEOPLE REPORTED TO ME 1619 00:56:27,112 --> 00:56:28,581 THAT -- I ACTUALLY WROTE THIS A 1620 00:56:28,581 --> 00:56:30,349 LITTLE INCORRECTLY ON MY SLIDE, 1621 00:56:30,349 --> 00:56:33,452 BUT TWO PEOPLE REPORTED THAT 1622 00:56:33,452 --> 00:56:36,255 TREATMENT REDIRECTED FLUID IN 1623 00:56:36,255 --> 00:56:37,790 WAYS THAT EXACERBATED PROBLEMS. 1624 00:56:37,790 --> 00:56:40,159 IN ONE OF THEM, IT WAS 1625 00:56:40,159 --> 00:56:41,260 COMPRESSION AND IN THE OTHER 1626 00:56:41,260 --> 00:56:42,361 ONE, IT WAS MASSAGE. 1627 00:56:42,361 --> 00:56:45,130 BUT THAT LEADS ME TO THINK THAT 1628 00:56:45,130 --> 00:56:48,467 THEIR CAN CONDITION WAS REALLYT 1629 00:56:48,467 --> 00:56:49,101 UNDERSTOOD BY THE PEOPLE 1630 00:56:49,101 --> 00:56:49,735 TREATING THEM. 1631 00:56:49,735 --> 00:56:53,539 OUR PATIENTS HAVE HYPOTONIA AND 1632 00:56:53,539 --> 00:56:55,074 JOINT HYPERMOBILITY. 1633 00:56:55,074 --> 00:56:58,410 EVEN FOR OUR BABIES, WHEN YOU 1634 00:56:58,410 --> 00:57:00,012 GET THEM DRESSED, I'VE HEARD 1635 00:57:00,012 --> 00:57:02,915 SOMEONE SAY IT'S LIKE GETTING AN 1636 00:57:02,915 --> 00:57:04,650 OCTOPUS IN A PAPER BAG. 1637 00:57:04,650 --> 00:57:06,785 SO IF YOU TELL A PARENT WHO'S 1638 00:57:06,785 --> 00:57:08,087 STRUGGLING WITH THIS THAT THEY 1639 00:57:08,087 --> 00:57:11,090 NOW NEED TO USE COMPRESSION 1640 00:57:11,090 --> 00:57:13,726 GARMENTS, IT'S INCONCEIVABLE. 1641 00:57:13,726 --> 00:57:17,796 OUR PATIENTS ALSO HAVE SENSORY 1642 00:57:17,796 --> 00:57:21,100 SENSITIVITIES, WHICH IS PROBABLY 1643 00:57:21,100 --> 00:57:24,770 CONTRIBUTING TO THEIR LACK OF 1644 00:57:24,770 --> 00:57:27,640 TOLERANCE OF GARMENTS. 1645 00:57:27,640 --> 00:57:29,408 TESTING FOR LYMPHATIC 1646 00:57:29,408 --> 00:57:31,210 INVOLVEMENT IS NOT WIDELY 1647 00:57:31,210 --> 00:57:32,111 OFFERED AND SOMETIMES NOT 1648 00:57:32,111 --> 00:57:34,246 ACCEPTED BY PATIENTS WHEN IT IS. 1649 00:57:34,246 --> 00:57:36,215 I DON'T REALLY HAVE WISHES BUT I 1650 00:57:36,215 --> 00:57:38,384 DID ASK THE WOMAN I INTERVIEWED 1651 00:57:38,384 --> 00:57:40,419 WITH THE 18-YEAR-OLD SON WHAT 1652 00:57:40,419 --> 00:57:44,423 HER WISHES WOULD BE, AND SHE 1653 00:57:44,423 --> 00:57:45,491 SAID SHOES AND CLOTHES THAT FIT. 1654 00:57:45,491 --> 00:57:46,659 I INCLUDED THAT HERE, I THOUGHT 1655 00:57:46,659 --> 00:57:49,662 IT WAS INTERESTING BECAUSE 1656 00:57:49,662 --> 00:57:50,829 ACTUALLY SHOES THAT FIT IS SUCH 1657 00:57:50,829 --> 00:57:56,468 A WIDELY SHARED WISH ACROSS OUR 1658 00:57:56,468 --> 00:57:57,836 POPULATION AND PROBABLY THE 1659 00:57:57,836 --> 00:57:59,104 OTHER PROS CONDITIONS AS WELL. 1660 00:57:59,104 --> 00:57:59,405 THAT'S IT. 1661 00:57:59,405 --> 00:57:59,972 THANK YOU. 1662 00:57:59,972 --> 00:58:01,573 >> THANK YOU, CHRISTY. 1663 00:58:01,573 --> 00:58:05,377 THANK YOU AGAIN FOR ANOTHER 1664 00:58:05,377 --> 00:58:06,111 POWERFUL PRESENTATION. 1665 00:58:06,111 --> 00:58:07,413 WE WILL MOVE TO THE NEXT 1666 00:58:07,413 --> 00:58:09,148 PRESENTATION BY MICHAEL 1667 00:58:09,148 --> 00:58:10,149 DELLINGER. 1668 00:58:10,149 --> 00:58:15,421 DR. DELLINGER IS THE DIRECTOR OF 1669 00:58:15,421 --> 00:58:16,689 RESEARCH OF LYMPHATIC 1670 00:58:16,689 --> 00:58:17,323 MALFORMATION INSTITUTE, AND HE 1671 00:58:17,323 --> 00:58:18,857 WILL BE SHARING A JOINT 1672 00:58:18,857 --> 00:58:21,193 PRESENTATION TODAY REPRESENTING 1673 00:58:21,193 --> 00:58:31,170 ALSO LYMPHANGIOMA -- AND 1674 00:58:31,170 --> 00:58:32,237 GORHAM'S DISEASE. 1675 00:58:32,237 --> 00:58:34,740 >> LIKE SELEN SAID, I'M MIKE 1676 00:58:34,740 --> 00:58:36,241 DELLINGER, DIRECTOR OF RESEARCH 1677 00:58:36,241 --> 00:58:38,444 FOR THE LYMPHATIC MALFORMATION 1678 00:58:38,444 --> 00:58:39,978 INSTITUTE, AND TODAY I'LL BE 1679 00:58:39,978 --> 00:58:44,917 REPRESENTING THE LMI AND LGBT. 1680 00:58:44,917 --> 00:58:45,117 LGDA, 1681 00:58:45,117 --> 00:58:46,251 TWO NON-PROFIT ORGANIZATIONS 1682 00:58:46,251 --> 00:58:48,454 FOCUSED ON IMPROVING THE LIVES 1683 00:58:48,454 --> 00:58:50,456 OF COMPLEX LYMPHATIC ANOMALY 1684 00:58:50,456 --> 00:58:52,358 PATIENTS. 1685 00:58:52,358 --> 00:58:54,326 CLAs ARE RARE DISEASES CAUSED 1686 00:58:54,326 --> 00:58:55,828 BY THE ABNORMAL DEVELOPMENT OF 1687 00:58:55,828 --> 00:58:59,398 LYMPHATIC VESSELS. 1688 00:58:59,398 --> 00:59:00,999 CLAs INCLUDE GENERALIZED 1689 00:59:00,999 --> 00:59:05,571 LYMPHATIC ANOMALY, GORHAM STOUT 1690 00:59:05,571 --> 00:59:07,940 DISEASE, GENERALIZED LYMPHATIC 1691 00:59:07,940 --> 00:59:13,612 ANOMALY, KAPOSI FORM 1692 00:59:13,612 --> 00:59:14,747 LYMPHANGIOMATOSIS, AND CENTRAL 1693 00:59:14,747 --> 00:59:16,281 CONDUCTING LYMPHATIC ANOMALY. 1694 00:59:16,281 --> 00:59:17,616 RECENTLY INVESTIGATORS HAVE 1695 00:59:17,616 --> 00:59:19,485 FOUND THAT CLAs CAN BE CAUSED 1696 00:59:19,485 --> 00:59:24,823 BY SOMATIC GENETIC MUTATIONS IN 1697 00:59:24,823 --> 00:59:26,058 LYMPHATIC AND -- CELLS. 1698 00:59:26,058 --> 00:59:28,327 OVER 10 YEARS AGO, THE LMI AND 1699 00:59:28,327 --> 00:59:29,928 LGDA WERE CREATED TO ADDRESS THE 1700 00:59:29,928 --> 00:59:31,230 NEEDS OF THE CLA PATIENT 1701 00:59:31,230 --> 00:59:32,431 COMMUNITY. 1702 00:59:32,431 --> 00:59:35,100 THE LMI AND LGDA WORK CLOSELY 1703 00:59:35,100 --> 00:59:36,602 TOGETHER TO SERVE THIS 1704 00:59:36,602 --> 00:59:38,270 COMMUNITY. 1705 00:59:38,270 --> 00:59:41,306 THE LMI'S PRIMARY FOCUS IS ON 1706 00:59:41,306 --> 00:59:42,241 ADVANCING GROUNDBREAKING 1707 00:59:42,241 --> 00:59:45,978 RESEARCH ON CLAs, AND SINCE 1708 00:59:45,978 --> 00:59:48,680 2010, THE LMI HAS INVESTED OVER 1709 00:59:48,680 --> 00:59:51,950 $5 MILLION INTO CLA RESEARCH. 1710 00:59:51,950 --> 00:59:54,353 THE LGDA ALSO HELPS ADVANCE 1711 00:59:54,353 --> 00:59:56,388 RESUCH BUT ITS PRIMARY FOCUS IS 1712 00:59:56,388 --> 00:59:58,023 ON SUPPORTING THE PATIENT 1713 00:59:58,023 --> 01:00:01,326 COMMUNITY, AND THE LGDA DOES 1714 01:00:01,326 --> 01:00:03,662 THIS THROUGH ADVOCACY, 1715 01:00:03,662 --> 01:00:04,563 EDUCATIONAL EFFORTS AND BY 1716 01:00:04,563 --> 01:00:05,364 CONNECTING PATIENTS WITH PEERS 1717 01:00:05,364 --> 01:00:13,272 AND NETWORKS OF CARE. 1718 01:00:13,272 --> 01:00:14,873 CLA PATIENTS EXPERIENCE SEVERAL 1719 01:00:14,873 --> 01:00:16,775 SIGNIFICANT CHALLENGES. 1720 01:00:16,775 --> 01:00:18,777 THESE INCLUDE DELAYS IN 1721 01:00:18,777 --> 01:00:19,845 DIAGNOSIS, WHICH ULTIMATELY 1722 01:00:19,845 --> 01:00:22,815 DELAY CARE. 1723 01:00:22,815 --> 01:00:23,949 THEY MAY LACK ACCESS TO 1724 01:00:23,949 --> 01:00:25,150 INFORMATION ABOUT CLAs, AND 1725 01:00:25,150 --> 01:00:26,552 THEY CAN EXPERIENCE CHALLENGES 1726 01:00:26,552 --> 01:00:29,788 NAVIGATING THE COMPLEX 1727 01:00:29,788 --> 01:00:38,464 HEALTHCARE SYSTEM. 1728 01:00:38,464 --> 01:00:39,665 CLAs ARE MAINLY DIAGNOSED IN 1729 01:00:39,665 --> 01:00:41,433 CHILDREN WHO CAN EXPERIENCE 1730 01:00:41,433 --> 01:00:44,102 DIFFICULTY TRANSITIONING TO 1731 01:00:44,102 --> 01:00:48,707 ADULT CARE. 1732 01:00:48,707 --> 01:00:53,679 KRACLA RESEARCHERS ALSO EXPERIEE 1733 01:00:53,679 --> 01:00:55,080 SEVERAL CHALLENGES. 1734 01:00:55,080 --> 01:00:56,014 THESE INCLUDE LIMITED FUNDING 1735 01:00:56,014 --> 01:00:57,082 OPPORTUNITIES. 1736 01:00:57,082 --> 01:00:58,283 ADDITIONALLY, STUD DI SECTIONS 1737 01:00:58,283 --> 01:01:00,619 MAY LACK REVIEWERRERS WITH 1738 01:01:00,619 --> 01:01:02,387 KNOWLEDGE ABOUT CLAs OR 1739 01:01:02,387 --> 01:01:04,056 LYMPHATIC DISEASES IN GENERAL. 1740 01:01:04,056 --> 01:01:05,724 ADDITIONALLY, PATIENT SAMPLES 1741 01:01:05,724 --> 01:01:07,626 ARE SCARCE, IMPACTING GENE 1742 01:01:07,626 --> 01:01:08,360 DISCOVERY AND VALIDATION 1743 01:01:08,360 --> 01:01:13,499 STUDIES. 1744 01:01:13,499 --> 01:01:14,900 SO OUR TOP THREE WISHES TO 1745 01:01:14,900 --> 01:01:17,202 IMPROVE THE CARE AND LIVES OF 1746 01:01:17,202 --> 01:01:18,904 CLA PATIENTS ARE TO IMPROVE THE 1747 01:01:18,904 --> 01:01:21,340 DIAGNOSIS OF CLAs, INCREASE 1748 01:01:21,340 --> 01:01:22,908 TREATMENT OPTIONS, AND INCREASE 1749 01:01:22,908 --> 01:01:24,443 ACCESS TO CARE. 1750 01:01:24,443 --> 01:01:25,978 SO INCREASING THE NUMBER OF 1751 01:01:25,978 --> 01:01:28,247 PATIENTS WITH A GENETIC 1752 01:01:28,247 --> 01:01:29,515 DIAGNOSIS AND SHORTENING THE 1753 01:01:29,515 --> 01:01:32,050 TIME TO DIAGNOSIS COULD MINIMIZE 1754 01:01:32,050 --> 01:01:33,352 DELAYS IN PATIENTS RECEIVING 1755 01:01:33,352 --> 01:01:36,655 APPROPRIATE TARGETED THERAPIES. 1756 01:01:36,655 --> 01:01:37,789 IDENTIFYING NEW DRUGS TO BE USED 1757 01:01:37,789 --> 01:01:40,125 ALONE OR IN COMBINATION WITH 1758 01:01:40,125 --> 01:01:41,193 EXISTING ONES COULD IMPROVE 1759 01:01:41,193 --> 01:01:42,728 PATIENT OUTCOMES. 1760 01:01:42,728 --> 01:01:45,330 AND BETTER ACCESS TO CARE COULD 1761 01:01:45,330 --> 01:01:47,432 LESSEN GEOGRAPHIC AND FINANCIAL 1762 01:01:47,432 --> 01:01:48,467 OBSTACLES EXPERIENCED BY 1763 01:01:48,467 --> 01:01:56,441 PATIENTS AND THEIR FAMILIES. 1764 01:01:56,441 --> 01:01:58,310 OUR TOP THREE WISHES TO SUPPORT 1765 01:01:58,310 --> 01:02:00,579 THE GROWTH OF CLA RESEARCH ARE 1766 01:02:00,579 --> 01:02:03,582 ADDITIONAL FUNDING 1767 01:02:03,582 --> 01:02:04,917 OPPORTUNITIES, ENHANCE ACCESS TO 1768 01:02:04,917 --> 01:02:06,752 PATIENT SAMPLES AND THE 1769 01:02:06,752 --> 01:02:07,819 ESTABLISHMENT OF A PATIENT 1770 01:02:07,819 --> 01:02:08,220 DATABASE. 1771 01:02:08,220 --> 01:02:09,955 SO ADDITIONAL FUNDING 1772 01:02:09,955 --> 01:02:10,789 OPPORTUNITIES ARE REQUIRED TO 1773 01:02:10,789 --> 01:02:12,958 SUPPORT THE GROWING NUMBER OF 1774 01:02:12,958 --> 01:02:15,193 CLA RESEARCHERS AND THE SCALING 1775 01:02:15,193 --> 01:02:18,263 UP OF RESEARCH PROJECTS. 1776 01:02:18,263 --> 01:02:19,164 THEY'RE ALSO NEEDED TO FOSTER 1777 01:02:19,164 --> 01:02:21,934 THE DEVELOPMENT OF THE NEXT 1778 01:02:21,934 --> 01:02:23,702 GENERATION OF CLA RESEARCHERS, 1779 01:02:23,702 --> 01:02:25,470 AND A CENTRALIZED BIOBANK AND 1780 01:02:25,470 --> 01:02:26,939 DATABASE COULD FACILITATE 1781 01:02:26,939 --> 01:02:28,140 GENETIC DISCOVERIES, AND RAISE 1782 01:02:28,140 --> 01:02:29,641 NEW CLINICALLY RELEVANT 1783 01:02:29,641 --> 01:02:35,280 QUESTIONS. 1784 01:02:35,280 --> 01:02:36,281 SO WITH THAT, I JUST WANT TO 1785 01:02:36,281 --> 01:02:37,349 THANK YOU FOR YOUR ATTENTION. 1786 01:02:37,349 --> 01:02:43,455 WE WANT TO THANK THE DEDICATED 1787 01:02:43,455 --> 01:02:44,656 RESEARCHERS AND CLINICIANS FOR 1788 01:02:44,656 --> 01:02:46,825 THEIR UNWAVERING COMMITMENT TO 1789 01:02:46,825 --> 01:02:49,261 CLAs AND MOST IMPORTANTLY WE 1790 01:02:49,261 --> 01:02:51,396 WANT TO THANK THE CLA PATIENT 1791 01:02:51,396 --> 01:02:52,731 COMMUNITY AND TOGETHER WE REMAIN 1792 01:02:52,731 --> 01:02:56,268 HOPEFUL THAT NEW TREATMENTS WILL 1793 01:02:56,268 --> 01:02:58,303 EMERGE, IMPROVE LIVES AND 1794 01:02:58,303 --> 01:02:59,638 BRIGHTER FUTURES FOR THOSE 1795 01:02:59,638 --> 01:03:01,273 AFFECT BID COMPLEX LYMPHATIC 1796 01:03:01,273 --> 01:03:01,640 ANOMALY. 1797 01:03:01,640 --> 01:03:02,874 NEXT I'D LIKE TO TURN OVER TO 1798 01:03:02,874 --> 01:03:05,077 OUR PATIENT REPRESENTATIVE, LIZ 1799 01:03:05,077 --> 01:03:05,277 BOVEE. 1800 01:03:05,277 --> 01:03:06,445 >> HI, EVERYONE. 1801 01:03:06,445 --> 01:03:08,113 THANK YOU FOR HAVING ME HERE 1802 01:03:08,113 --> 01:03:09,681 TODAY FOR REPRESENTING THE CLA 1803 01:03:09,681 --> 01:03:10,048 COMMUNITY. 1804 01:03:10,048 --> 01:03:11,483 I'D LIKE TO SHARE A LITTLE ABOUT 1805 01:03:11,483 --> 01:03:12,551 MY STORY AS WELL AS CHALLENGES I 1806 01:03:12,551 --> 01:03:13,185 HAVE FACED. 1807 01:03:13,185 --> 01:03:15,921 WHEN I WAS 4, I FELL OFF A CHAIR 1808 01:03:15,921 --> 01:03:18,190 AT THE DINING TABLE AND THAT 1809 01:03:18,190 --> 01:03:20,525 EVENING I HAD A LARGE LUMP ON MY 1810 01:03:20,525 --> 01:03:21,126 CHEST. 1811 01:03:21,126 --> 01:03:22,761 THE NEXT DAY AFTER GOING THROUGH 1812 01:03:22,761 --> 01:03:24,396 DIFFERENT MEDICAL TESTS AND 1813 01:03:24,396 --> 01:03:25,564 DIFFERENT -- SEEING DIFFERENT 1814 01:03:25,564 --> 01:03:27,099 DOCTORS, WE IDENTIFIED THAT I 1815 01:03:27,099 --> 01:03:28,834 HAD A GROWTH AROUND MY HEART AND 1816 01:03:28,834 --> 01:03:30,535 LUNGS ALONG WITH THE LUMP ON MY 1817 01:03:30,535 --> 01:03:30,902 CHEST. 1818 01:03:30,902 --> 01:03:32,871 AT THAT TIME, THERE WASN'T A 1819 01:03:32,871 --> 01:03:35,007 DIAGNOSIS FOR THIS DISEASE. 1820 01:03:35,007 --> 01:03:36,608 I UNDERWENT MULTIPLE SURGERIES 1821 01:03:36,608 --> 01:03:38,710 AND HAD LOTS OF MONITORING THAT 1822 01:03:38,710 --> 01:03:40,412 I FOLLOWED THROUGH UP THROUGH 1823 01:03:40,412 --> 01:03:42,881 UNTIL I WAS IN COLLEGE. 1824 01:03:42,881 --> 01:03:47,352 BACK IN 2019, I WAS DIAGNOSED 1825 01:03:47,352 --> 01:03:48,754 WITH LARGE LYMPH NODES AND MY 1826 01:03:48,754 --> 01:03:49,821 DOCTORS DECIDED IT WAS BEST FOR 1827 01:03:49,821 --> 01:03:51,423 ME TO GO TO THE E.R. 1828 01:03:51,423 --> 01:03:53,091 AT THE E.R. I WAS ACTUALLY 1829 01:03:53,091 --> 01:03:55,927 DIAGNOSED WITH CANCER. 1830 01:03:55,927 --> 01:03:57,496 AND I SPENT SEVERAL DAYS IN THE 1831 01:03:57,496 --> 01:03:58,964 HOSPITAL UNDERGOING TESTS 1832 01:03:58,964 --> 01:03:59,931 ULTIMATELY TO DETERMINE I DID 1833 01:03:59,931 --> 01:04:03,101 NOT HAVE CANCER. 1834 01:04:03,101 --> 01:04:04,670 THIS LED TO LOTS OF TESTING AND 1835 01:04:04,670 --> 01:04:06,138 WENT FROM DOCTOR TO DOCTOR TO 1836 01:04:06,138 --> 01:04:07,706 DOCTOR UNTIL I WAS ABLE TO GET A 1837 01:04:07,706 --> 01:04:08,206 DIAGNOSIS. 1838 01:04:08,206 --> 01:04:09,441 HOWEVER, FOR ME GETTING A 1839 01:04:09,441 --> 01:04:12,644 DIAGNOSIS DIDN'T INSTANTLY MEAN 1840 01:04:12,644 --> 01:04:12,911 TREATMENT. 1841 01:04:12,911 --> 01:04:14,079 MY DOCTORS DIDN'T UNDERSTAND 1842 01:04:14,079 --> 01:04:15,914 WHAT THE DISEASE REALLY WAS, AND 1843 01:04:15,914 --> 01:04:17,215 I KEPT BEING TOLD THAT I 1844 01:04:17,215 --> 01:04:18,417 DESERVED A DOCTOR WHO KNOWS HOW 1845 01:04:18,417 --> 01:04:21,687 TO TREAT MY DISEASE. 1846 01:04:21,687 --> 01:04:23,021 EVENTUALLY I WAS ABLE TO GET 1847 01:04:23,021 --> 01:04:24,389 CONNECTED WITH A VASCULAR 1848 01:04:24,389 --> 01:04:25,390 ANOMALY CLINIC AND START 1849 01:04:25,390 --> 01:04:27,059 TREATMENT. 1850 01:04:27,059 --> 01:04:28,126 AFTER A YEAR OF WORKING WITH 1851 01:04:28,126 --> 01:04:30,028 THAT CLINIC, I WAS ABLE TO 1852 01:04:30,028 --> 01:04:32,464 UNDERGO GENETIC TESTING IN WHICH 1853 01:04:32,464 --> 01:04:34,399 I TESTED POSITIVE FOR THE PIK3CA 1854 01:04:34,399 --> 01:04:34,833 GENE MUTATION. 1855 01:04:34,833 --> 01:04:36,868 THIS ALLOWED ME TO HAVE A MORE 1856 01:04:36,868 --> 01:04:38,437 TARGETED TREATMENT THAT HAS BEEN 1857 01:04:38,437 --> 01:04:40,172 WORKING VERY WELL FOR ME TODAY. 1858 01:04:40,172 --> 01:04:42,808 HOWEVER, IN ADDITION TO SEEING 1859 01:04:42,808 --> 01:04:45,610 THE PEDIATRIC CLINIC, I AM AN 1860 01:04:45,610 --> 01:04:47,145 ADULT, WHICH AS WE'VE DISCUSSED 1861 01:04:47,145 --> 01:04:50,148 EARLIER DOES CAUSE ISSUES. 1862 01:04:50,148 --> 01:04:52,284 SO THIS MEANS THAT I HAVE TO SEE 1863 01:04:52,284 --> 01:04:53,719 MULTIPLE SPECIALISTS ACROSS 1864 01:04:53,719 --> 01:04:55,253 DIFFERENT SPECIALTIES AT THE 1865 01:04:55,253 --> 01:04:56,455 ADULT CENTER, IN ADDITION TO 1866 01:04:56,455 --> 01:04:57,556 SEEING THE DOCTORS IN THE 1867 01:04:57,556 --> 01:04:59,591 PEDIATRIC CENTER. 1868 01:04:59,591 --> 01:05:02,961 WHEN I'M ON THE ADULT SIDE, MY 1869 01:05:02,961 --> 01:05:03,862 DOCTORS EITHER BLAME MY DISEASE 1870 01:05:03,862 --> 01:05:06,932 FOR ISSUES AND ARE HESS TABT TOO 1871 01:05:06,932 --> 01:05:09,067 DO ANYTHING OR REALLY CHANGE ANY 1872 01:05:09,067 --> 01:05:11,903 CARE WITHOUT GOING BACK TO THE 1873 01:05:11,903 --> 01:05:13,371 PEDIATRIC CENTER, OR THEY IGNORE 1874 01:05:13,371 --> 01:05:14,539 MY ISSUES AND LOOK AT IT JUST AS 1875 01:05:14,539 --> 01:05:15,874 A SYMPTOM THAT THEY ARE SEEING, 1876 01:05:15,874 --> 01:05:18,610 WHICH CAUSES ISSUES WHEN YOU'RE 1877 01:05:18,610 --> 01:05:20,879 LOOKING AT ACROSS MY WHOLE BODY 1878 01:05:20,879 --> 01:05:21,446 HOLISTICALLY. 1879 01:05:21,446 --> 01:05:22,614 THINKING THROUGH THE DIFFERENT 1880 01:05:22,614 --> 01:05:23,882 CHALLENGES THAT PATIENTS THAT 1881 01:05:23,882 --> 01:05:25,884 I'VE CONNECTED WITH FACE, WE ALL 1882 01:05:25,884 --> 01:05:28,186 WANT TO IMPROVE DIAGNOSIS. 1883 01:05:28,186 --> 01:05:30,222 THERE'S LOTS OF CASES OF 1884 01:05:30,222 --> 01:05:30,989 MISDIAGNOSIS AS WELL AS UNSURE 1885 01:05:30,989 --> 01:05:33,692 WHERE TO GO NEXT. 1886 01:05:33,692 --> 01:05:34,960 EXPANDED TREATMENT OPTIONS ARE 1887 01:05:34,960 --> 01:05:35,827 ALSO VERY IMPORTANT. 1888 01:05:35,827 --> 01:05:37,395 WHILE THE MEDICATION I'M ON IS 1889 01:05:37,395 --> 01:05:38,730 CURRENTLY HELPING, IT IS NOT 1890 01:05:38,730 --> 01:05:40,165 WITHOUT SIDE EFFECTS. 1891 01:05:40,165 --> 01:05:41,867 WHICH HAS LED TO MORE DOCTORS 1892 01:05:41,867 --> 01:05:42,768 AND OTHER SPECIALTIES. 1893 01:05:42,768 --> 01:05:44,436 THERE'S ALSO A LARGE CONCERN 1894 01:05:44,436 --> 01:05:46,371 ABOUT LONG-TERM IMPACTS, AND HOW 1895 01:05:46,371 --> 01:05:48,106 THIS MEDICATION WILL AFFECT OUR 1896 01:05:48,106 --> 01:05:49,975 PATIENT COMMUNITY AS WE AGE. 1897 01:05:49,975 --> 01:05:52,110 IN ADDITION, AS MANY OF THE 1898 01:05:52,110 --> 01:05:53,445 PRESENTERS HAVE DISCUSSED, THE 1899 01:05:53,445 --> 01:05:55,480 COST OF CARE. 1900 01:05:55,480 --> 01:05:57,482 BECAUSE THIS MEDICATION IS SO 1901 01:05:57,482 --> 01:05:58,784 EXPENSIVE, I AM CONSTANTLY 1902 01:05:58,784 --> 01:06:00,352 WORRIED THAT MY INSURANCE EITHER 1903 01:06:00,352 --> 01:06:01,920 WILL STOP COVERING IT OR THERE 1904 01:06:01,920 --> 01:06:03,822 WILL BE OTHER ISSUES WITH 1905 01:06:03,822 --> 01:06:04,790 GETTINGED MEDICATION. 1906 01:06:04,790 --> 01:06:06,691 THIS CAUSES ME TO WORK EXTRA 1907 01:06:06,691 --> 01:06:08,059 HARD AT WORK BECAUSE I AM 1908 01:06:08,059 --> 01:06:09,427 CONCERNED THAT I MIGHT LOSE MY 1909 01:06:09,427 --> 01:06:13,832 HEALTH INSURANCE. 1910 01:06:13,832 --> 01:06:14,833 ADDITIONALLY ACCESS TO CARE. 1911 01:06:14,833 --> 01:06:15,734 WHILE I'M LOCATED NEAR THAT 1912 01:06:15,734 --> 01:06:17,002 CLINIC, THESE OPERATE IN THE 1913 01:06:17,002 --> 01:06:17,836 PEDIATRIC CENTER AND THAT CAUSES 1914 01:06:17,836 --> 01:06:19,538 LOTS OF CONCERNS FOR THE PATIENT 1915 01:06:19,538 --> 01:06:21,373 COMMUNITIES. 1916 01:06:21,373 --> 01:06:22,340 I'VE HAD MANY PATIENT FAMILIES 1917 01:06:22,340 --> 01:06:23,575 COME TO ME AND SAY THAT THEY'RE 1918 01:06:23,575 --> 01:06:25,310 HAPPY TO HEAR MY STORY BECAUSE 1919 01:06:25,310 --> 01:06:26,478 IT HELPS GIVE THEM AN IDEA OF 1920 01:06:26,478 --> 01:06:27,946 WHAT THE FUTURE WILL BE LIKE FOR 1921 01:06:27,946 --> 01:06:28,914 THEM. 1922 01:06:28,914 --> 01:06:30,849 HOWEVER, THIS ALSO GIVES ME 1923 01:06:30,849 --> 01:06:33,718 ANXIETY BECAUSE THE ADULT CARE 1924 01:06:33,718 --> 01:06:35,120 IS NOT WHERE IT NEEDS TO BE FOR 1925 01:06:35,120 --> 01:06:37,122 OUR DISEASE. 1926 01:06:37,122 --> 01:06:37,823 GOING FORWARD, I'D REALLY HOPE 1927 01:06:37,823 --> 01:06:40,659 THAT WE COULD FOCUS ON IMPROVED 1928 01:06:40,659 --> 01:06:42,427 DIAGNOSIS, IMPROVED TREATMENT 1929 01:06:42,427 --> 01:06:44,296 OPTIONS THAT HAVE LESS SIDE 1930 01:06:44,296 --> 01:06:45,030 EFFECTS, AS WELL AS ACCESS TO 1931 01:06:45,030 --> 01:06:45,897 CARE FOR ALL AGES. 1932 01:06:45,897 --> 01:06:49,401 THANK YOU. 1933 01:06:49,401 --> 01:06:51,603 >> THANK YOU, LIZ, AND THANKS, 1934 01:06:51,603 --> 01:06:52,704 MIKE. 1935 01:06:52,704 --> 01:06:56,875 WE ARE GOING TO MOVE TO THE NEXT 1936 01:06:56,875 --> 01:06:58,276 SPEAKER, MELLENNEE FINGER. 1937 01:06:58,276 --> 01:07:02,814 SHE'S THE DIRECTOR OF K-T 1938 01:07:02,814 --> 01:07:07,853 SUPPORT GROUP, KLIPPEL-TRENAUNAY 1939 01:07:07,853 --> 01:07:08,119 SYNDROME. 1940 01:07:08,119 --> 01:07:08,653 >> THANK YOU. 1941 01:07:08,653 --> 01:07:09,988 AS DIRECTOR OF THE K-T SUPPORT 1942 01:07:09,988 --> 01:07:11,957 GROUP, WE PROVIDE CONNECTIONS, 1943 01:07:11,957 --> 01:07:13,458 SUPPORT, EDUCATION, AND 1944 01:07:13,458 --> 01:07:15,861 EMPOWERMENT FOR FAMILIES COPING 1945 01:07:15,861 --> 01:07:19,130 WITH COMPLEX VASCULAR LYMPHATIC 1946 01:07:19,130 --> 01:07:19,397 ANOMALIES. 1947 01:07:19,397 --> 01:07:22,734 K-T IS A CONGENITAL SYNDROME 1948 01:07:22,734 --> 01:07:24,870 CONDITION THAT INVOLVES 1949 01:07:24,870 --> 01:07:27,005 CAPILLARY, LYMPHATIC AND VENOUS 1950 01:07:27,005 --> 01:07:28,807 MALFORMATIONS PLUS ABNORMAL 1951 01:07:28,807 --> 01:07:30,141 GROWTH OF BONE AND SOFT TISSUE. 1952 01:07:30,141 --> 01:07:32,143 WHEN WE BEGAN IN 1986, THERE 1953 01:07:32,143 --> 01:07:35,814 WERE ONLY A FEW DIAGNOSES FOR 1954 01:07:35,814 --> 01:07:38,617 LARGE BIRTH MARKS OVERLYING 1955 01:07:38,617 --> 01:07:39,484 LYMPHATIC VENOUS MALFORMATIONS. 1956 01:07:39,484 --> 01:07:41,720 K-T WAS COMMONLY DIAGNOSED WHEN 1957 01:07:41,720 --> 01:07:44,055 THE SYMPTOMS INVOLVED LIMBS. 1958 01:07:44,055 --> 01:07:46,458 GROUP MEMBERS TALK ABOUT HOW NO 1959 01:07:46,458 --> 01:07:49,895 TWO CASES WERE ALIKE. 1960 01:07:49,895 --> 01:07:51,229 AROUND 2009, SIMILARITIES IN 1961 01:07:51,229 --> 01:07:53,932 SOME PATIENTS WERE IDENTIFIED 1962 01:07:53,932 --> 01:07:56,101 AND CLOVES WAS RECOGNIZED AS A 1963 01:07:56,101 --> 01:07:57,168 SEPARATE CONDITION. 1964 01:07:57,168 --> 01:07:59,304 IN 2015, A JOURNAL ARTICLE 1965 01:07:59,304 --> 01:08:00,839 APPEARED, IDENTIFYING THE GENE 1966 01:08:00,839 --> 01:08:04,576 AND OVER THE NEXT YEARS, A 1967 01:08:04,576 --> 01:08:06,278 SPECTRUM CONDITION RELATED 1968 01:08:06,278 --> 01:08:08,813 OVERGROWTH EMERGED. 1969 01:08:08,813 --> 01:08:11,149 PROS NOW INCLUDES AT LEAST 14 1970 01:08:11,149 --> 01:08:11,449 PHENOTYPES. 1971 01:08:11,449 --> 01:08:15,820 THANK YOU. 1972 01:08:15,820 --> 01:08:18,089 THIS DOESN'T TELL THE WHOLE 1973 01:08:18,089 --> 01:08:19,291 STORY ABOUT K-T. 1974 01:08:19,291 --> 01:08:20,892 WE HAVE LOYAL MEMBERS THAT DATE 1975 01:08:20,892 --> 01:08:23,795 BACK TO 1986. 1976 01:08:23,795 --> 01:08:25,730 A SIGNIFICANT CHALLENGE IS STILL 1977 01:08:25,730 --> 01:08:27,332 DISEASE DEFINITIONS AND 1978 01:08:27,332 --> 01:08:30,769 DIAGNOSTIC CONSENSUS AMONG 1979 01:08:30,769 --> 01:08:32,237 PROVIDERS. 1980 01:08:32,237 --> 01:08:33,371 ISSVA UPDATES CLASSIFICATIONS 1981 01:08:33,371 --> 01:08:34,406 EVERY FEW YEARS AS NEW 1982 01:08:34,406 --> 01:08:35,840 INFORMATION IS AVAILABLE. 1983 01:08:35,840 --> 01:08:40,078 K-T IS CONSIDERED ONE OF THE 1984 01:08:40,078 --> 01:08:41,413 PROS CONDITIONS BUT NOT ALL WHO 1985 01:08:41,413 --> 01:08:42,881 ARE DIAGNOSED WITH K-T WILL SHOW 1986 01:08:42,881 --> 01:08:44,983 A PIK3CA MUTATION. 1987 01:08:44,983 --> 01:08:50,322 SOME ARE TIE 2, OTHERS MIGHT BE 1988 01:08:50,322 --> 01:08:51,423 3R1, ET CETERA. 1989 01:08:51,423 --> 01:08:55,193 GENETIC TI TESTING AND IMAGING 1990 01:08:55,193 --> 01:08:56,561 TECHNOLOGY HAS ENABLED MORE 1991 01:08:56,561 --> 01:08:58,163 ACCURATE DIAGNOSES FOR SOME. 1992 01:08:58,163 --> 01:09:00,365 ADULT MEMBERS CARRYING A K-T 1993 01:09:00,365 --> 01:09:03,935 DIAGNOSIS ARE NOT LIKELY TO BE 1994 01:09:03,935 --> 01:09:05,403 REDIAGNOSED UNLESS THEY CAN FIND 1995 01:09:05,403 --> 01:09:06,972 A PEDIATRIC VASCULAR ANOMALIES 1996 01:09:06,972 --> 01:09:08,606 CLINIC THAT SEES ADULTS. 1997 01:09:08,606 --> 01:09:10,809 THERE ARE NO POINT OF CARE TOOLS 1998 01:09:10,809 --> 01:09:13,311 AVAILABLE FOR ANY OF THESE 1999 01:09:13,311 --> 01:09:15,747 CONDITIONS, NO NATURAL HISTORIES 2000 01:09:15,747 --> 01:09:16,114 EXIST. 2001 01:09:16,114 --> 01:09:17,882 OVER THE PAST 20 YEARS, A 2002 01:09:17,882 --> 01:09:20,852 NETWORK OF MULTIDISCIPLINARY 2003 01:09:20,852 --> 01:09:23,321 PEDIATRIC VACs FORMED AT SOME 2004 01:09:23,321 --> 01:09:23,788 CHILDREN'S HOSPITALS. 2005 01:09:23,788 --> 01:09:26,057 THESE CLINICS ARE SPARSELY 2006 01:09:26,057 --> 01:09:26,958 DISTRIBUTED WITH LARGE GAPS IN 2007 01:09:26,958 --> 01:09:29,794 MANY AREAS. 2008 01:09:29,794 --> 01:09:31,229 DENISE PUT UP A SLIDE EARLIER 2009 01:09:31,229 --> 01:09:32,697 THAT HAD THE POINTS ON THERE IN 2010 01:09:32,697 --> 01:09:34,399 THE UNITED STATES. 2011 01:09:34,399 --> 01:09:35,900 PEDIATRIC PATIENTS OFTEN TRAVEL 2012 01:09:35,900 --> 01:09:37,335 LONG DISTANCES TO THESE CLINICS 2013 01:09:37,335 --> 01:09:39,637 WHILE ADULTS HAVE VIRTUALLY NO 2014 01:09:39,637 --> 01:09:41,139 SPECIALIZED PROVIDERS. 2015 01:09:41,139 --> 01:09:44,442 A FEW OF THESE CLINICS SEE, NOT 2016 01:09:44,442 --> 01:09:45,777 NECESSARILY TREAT, ADULTS BUT 2017 01:09:45,777 --> 01:09:46,911 MOST DO NOT. 2018 01:09:46,911 --> 01:09:49,447 THE PATIENTS OVER 18 DO NOT HAVE 2019 01:09:49,447 --> 01:09:50,682 CARE FROM KNOWLEDGEABLE 2020 01:09:50,682 --> 01:09:52,150 PROVIDERS. 2021 01:09:52,150 --> 01:09:55,253 THEIR SOURCES FOR INFORMATION 2022 01:09:55,253 --> 01:09:57,055 ARE ADVOCACY ORGANIZATIONS AND 2023 01:09:57,055 --> 01:09:57,689 OTHER PATIENTS. 2024 01:09:57,689 --> 01:09:58,857 INFORMATION IS NOT M COMING FROM 2025 01:09:58,857 --> 01:10:01,259 THEIR CARE PROVIDERS. 2026 01:10:01,259 --> 01:10:03,895 IF EMERGENCY CARE IS NEEDED, 2027 01:10:03,895 --> 01:10:06,264 DISEASE KNOWLEDGE IS 2028 01:10:06,264 --> 01:10:07,032 OVERWHELMINGLY NOT AVAILABLE, 2029 01:10:07,032 --> 01:10:08,800 MAKING A TRIP TO THE E.R. A REAL 2030 01:10:08,800 --> 01:10:11,603 THREAT. 2031 01:10:11,603 --> 01:10:16,241 THE LACK OF CERTIFIED LYMPHEDEMA 2032 01:10:16,241 --> 01:10:19,110 THERAPISTS AND COMPRESSION 2033 01:10:19,110 --> 01:10:20,879 GARMENT FITTERS ARE A BIG 2034 01:10:20,879 --> 01:10:25,617 OBSTACLE. 2035 01:10:25,617 --> 01:10:27,952 MOVING TO LACK OF RESOURCES. 2036 01:10:27,952 --> 01:10:29,421 INADEQUATE INSURANCE AND 2037 01:10:29,421 --> 01:10:32,724 APPROVAL ISSUES ARE DIFFICULT. 2038 01:10:32,724 --> 01:10:32,991 TO 2039 01:10:32,991 --> 01:10:34,025 NAVIGATE. 2040 01:10:34,025 --> 01:10:35,026 DURABLE GOODS COVERAGE VARIES 2041 01:10:35,026 --> 01:10:38,763 AND IS CHALLENGING. 2042 01:10:38,763 --> 01:10:40,298 FOR FIRMATION OF A DIAGNOSIS 2043 01:10:40,298 --> 01:10:41,499 OFTEN REQUIRES GENETIC TESTING 2044 01:10:41,499 --> 01:10:45,170 THAT IS DIFFICULT TO ATTAIN FOR 2045 01:10:45,170 --> 01:10:45,904 MULTIPLE REASONS. 2046 01:10:45,904 --> 01:10:47,439 FINANCIAL SUPPORT IS DIFFICULT. 2047 01:10:47,439 --> 01:10:49,441 THE COST OF HEALTHCARE, THE 2048 01:10:49,441 --> 01:10:52,043 OFTEN EXCESSIVE NEED TO MISS 2049 01:10:52,043 --> 01:10:53,445 WORK FOR APPOINTMENTS OR 2050 01:10:53,445 --> 01:10:54,979 ILLNESS, EATING HEALTHY, PLUS 2051 01:10:54,979 --> 01:10:57,148 NORMAL LIVING COSTS CAN GET 2052 01:10:57,148 --> 01:10:58,249 OVERWHELMING QUICKLY. 2053 01:10:58,249 --> 01:11:01,453 IEP PLANS ARE NOT DESIGNED TO 2054 01:11:01,453 --> 01:11:05,323 SERVE OUR CHILDREN. 2055 01:11:05,323 --> 01:11:08,526 504 PLANS ARE RARELY OFFERED. 2056 01:11:08,526 --> 01:11:09,527 FAMILIES NEED TO KNOW THEIR OWN 2057 01:11:09,527 --> 01:11:10,829 RIGHTS AND SEEK OUT ASSISTANCE, 2058 01:11:10,829 --> 01:11:12,097 WHICH IS ALSO NOT READILY 2059 01:11:12,097 --> 01:11:12,530 AVAILABLE. 2060 01:11:12,530 --> 01:11:14,432 FINDING CLOTHING AND SHOES THAT 2061 01:11:14,432 --> 01:11:21,706 FIT ARE A CHALLENGE. 2062 01:11:21,706 --> 01:11:23,308 OUR WISHES. 2063 01:11:23,308 --> 01:11:24,742 FUNDING FOR RESEARCH IN CLINICAL 2064 01:11:24,742 --> 01:11:25,877 TRIALS. 2065 01:11:25,877 --> 01:11:28,079 THE CURRENT MEASURES USED FOR 2066 01:11:28,079 --> 01:11:30,682 TRIALS MAKE TRIAL DESIGN LIMITED 2067 01:11:30,682 --> 01:11:32,617 AND DIFFICULT. 2068 01:11:32,617 --> 01:11:34,152 WE NEED POINT OF CARE 2069 01:11:34,152 --> 01:11:34,819 PATIENT-REPORTED OUT COME 2070 01:11:34,819 --> 01:11:36,554 MEASURES THAT ARE MORE 2071 01:11:36,554 --> 01:11:37,555 ACCURATELY REFLECTIVE OF 2072 01:11:37,555 --> 01:11:40,258 OUTCOMES IN OUR DISEASES. 2073 01:11:40,258 --> 01:11:42,360 THEY NEED TO ALLOW FOR THE 2074 01:11:42,360 --> 01:11:43,728 HETEROGENEOUS NATURE OF THESE 2075 01:11:43,728 --> 01:11:46,598 SPECTRUM KI DISORDERS AND IN SOE 2076 01:11:46,598 --> 01:11:48,766 CASES, THE COMMONALITIES OF 2077 01:11:48,766 --> 01:11:49,367 PHENOTYPICAL CONDITIONS WITH 2078 01:11:49,367 --> 01:11:51,503 DIFFERENT ETIOLOGIES. 2079 01:11:51,503 --> 01:11:53,571 WE WISH FOR CENTRALIZED CARE 2080 01:11:53,571 --> 01:11:57,175 ACCESSIBLE BY ALL FOR COMPLEX 2081 01:11:57,175 --> 01:11:57,942 LYMPHATIC VASCULAR CONDITIONS. 2082 01:11:57,942 --> 01:12:00,478 I WI 2083 01:12:01,179 --> 01:12:02,447 OUR WISH NUMBER THREE, WE WISH 2084 01:12:02,447 --> 01:12:04,382 FOR FOCUSED EFFORT ON STUDYING 2085 01:12:04,382 --> 01:12:06,351 AND UNDERSTANDING PAIN FOR 2086 01:12:06,351 --> 01:12:07,318 ADEQUATE TREATMENT. 2087 01:12:07,318 --> 01:12:09,954 I WILL TURN THIS OVER TO SINEAD, 2088 01:12:09,954 --> 01:12:13,024 MY PATIENT REPRESENTATIVE. 2089 01:12:13,024 --> 01:12:15,026 THANK YOU. 2090 01:12:15,026 --> 01:12:16,828 >> HI, EVERYONE. 2091 01:12:16,828 --> 01:12:17,595 MY NAME IS SINEAD. 2092 01:12:17,595 --> 01:12:20,932 I WAS ORIGINALLY DIAGNOSED -- 2093 01:12:20,932 --> 01:12:22,300 [SPEAKER ON MUTE] 2094 01:12:22,300 --> 01:12:28,506 >> SINEAD, YOU GOT MUTED. 2095 01:12:28,506 --> 01:12:28,973 YES. 2096 01:12:28,973 --> 01:12:31,910 >> OKAY. 2097 01:12:31,910 --> 01:12:32,110 SO -- 2098 01:12:32,110 --> 01:12:33,645 >> THERE YOU GO. 2099 01:12:33,645 --> 01:12:34,946 THANK YOU SO MUCH. 2100 01:12:34,946 --> 01:12:36,381 >> OKAY. 2101 01:12:36,381 --> 01:12:37,715 SO HI, MY NAME IS SINEAD. 2102 01:12:37,715 --> 01:12:40,218 I WAS ORIGINALLY DIAGNOSED WITH 2103 01:12:40,218 --> 01:12:43,755 K-T AND AFTER EXPERIENCING A LOT 2104 01:12:43,755 --> 01:12:45,156 OF COMPLICATIONS THAT THEY 2105 01:12:45,156 --> 01:12:46,558 COULDN'T FIGURE OUT, I WAS 2106 01:12:46,558 --> 01:12:51,763 EVENTUALLY SENT TO A CENTER IN 2107 01:12:51,763 --> 01:12:55,133 BOSTON TO BE REDIAGNOSED. 2108 01:12:55,133 --> 01:12:57,001 WE DIDN'T PLAN ON THAT BUT I WAS 2109 01:12:57,001 --> 01:13:00,405 REDIAGNOSED WITH PAR PARKES WEBR 2110 01:13:00,405 --> 01:13:02,207 AND I'VE WORKED CLOSELY WITH MEL 2111 01:13:02,207 --> 01:13:03,708 KNEEL TO CREATE A SUBSET OF THE 2112 01:13:03,708 --> 01:13:06,110 K-T GROUP FOR PEOPLE WITH PARKES 2113 01:13:06,110 --> 01:13:06,544 WEBER SYNDROME. 2114 01:13:06,544 --> 01:13:08,346 SO I'VE BEEN ASKED TO SHARE 2115 01:13:08,346 --> 01:13:10,915 PATIENT PERSPECTIVES FROM OUR 2116 01:13:10,915 --> 01:13:15,019 GROUP AND WE PUT THE MAIN 2117 01:13:15,019 --> 01:13:19,424 QUESTIONS OUT TO OUR GROUPS 2118 01:13:19,424 --> 01:13:21,192 ABOUT WHAT DO THEY WANT THEIR 2119 01:13:21,192 --> 01:13:26,264 VOICE TO BE AND WHAT ISSUES OR 2120 01:13:26,264 --> 01:13:27,799 CHALLENGES THEY WANTED 2121 01:13:27,799 --> 01:13:28,700 HIGHLIGHTED HERE, SO ON THE 2122 01:13:28,700 --> 01:13:31,202 SCREEN YOU CAN SEE SOME OF THE 2123 01:13:31,202 --> 01:13:32,237 THINGS, AND I'M JUST GOING TO 2124 01:13:32,237 --> 01:13:34,706 TOUCH ON THOSE SO FOR WHEN IT 2125 01:13:34,706 --> 01:13:38,409 COMES TO PAIN, WE'VE HEARD A LOT 2126 01:13:38,409 --> 01:13:42,080 THAT SEEKING HELP FOR PAIN FROM 2127 01:13:42,080 --> 01:13:43,948 PAIN SPECIALISTS, ESPECIALLY FOR 2128 01:13:43,948 --> 01:13:48,219 COMPLEX VASCULAR ANOMALIES, THAT 2129 01:13:48,219 --> 01:13:49,687 CONTAIN LYMPHATIC COMPONENT CAN 2130 01:13:49,687 --> 01:13:50,455 BE INCREDIBLY FRUSTRATING 2131 01:13:50,455 --> 01:13:52,056 BECAUSE THIS TYPE OF PAIN IS NOT 2132 01:13:52,056 --> 01:13:55,193 WELL UNDERSTOOD AND FOR MANY IN 2133 01:13:55,193 --> 01:13:57,495 OUR GROUP, THEY KNOW FIRSTHAND 2134 01:13:57,495 --> 01:14:00,298 HOW HARD IT IS TO GET HELP FOR 2135 01:14:00,298 --> 01:14:02,267 THIS AND THEY KNOW OPIOIDS 2136 01:14:02,267 --> 01:14:03,401 AREN'T GOING TO WORK FOR THIS. 2137 01:14:03,401 --> 01:14:06,170 SO IT'S VERY HARD TO GET PAIN 2138 01:14:06,170 --> 01:14:07,739 MANAGEMENT HELP WHEN YOU FEEL 2139 01:14:07,739 --> 01:14:10,008 JUDGED AND, LIKE, WHEN YOU GO 2140 01:14:10,008 --> 01:14:12,877 FOR HELP IN AN E.R., FOR 2141 01:14:12,877 --> 01:14:14,245 INSTANCE, THEY JUST THINK YOU'RE 2142 01:14:14,245 --> 01:14:15,613 DRUG SEEKING, WHEN YOU FULLY 2143 01:14:15,613 --> 01:14:16,514 WELL KNOW, THIS ISN'T GOING TO 2144 01:14:16,514 --> 01:14:17,882 HELP, THIS IS NOT WHAT I'M 2145 01:14:17,882 --> 01:14:20,151 LOOKING FOR. 2146 01:14:20,151 --> 01:14:21,452 WE'RE NOT LOOKING FOR A QUICK 2147 01:14:21,452 --> 01:14:23,821 FIX, WE'RE LOOKING FOR SOMETHING 2148 01:14:23,821 --> 01:14:25,690 THAT'S GOING TO HELP LONG TERM 2149 01:14:25,690 --> 01:14:27,759 AND WE NEED BETTER 2150 01:14:27,759 --> 01:14:29,260 UNDERSTANDING, BETTER CARE AND A 2151 01:14:29,260 --> 01:14:30,728 SOLUTION THAT TRULY ADDRESSES 2152 01:14:30,728 --> 01:14:32,730 THE UNIQUE CHALLENGES OF CHRONIC 2153 01:14:32,730 --> 01:14:34,299 PAIN RESULTING FROM CHRONIC 2154 01:14:34,299 --> 01:14:36,934 LYMPHATIC CONDITIONS. 2155 01:14:36,934 --> 01:14:40,505 FREQUENT INFECTIONS, FLARE-UPS 2156 01:14:40,505 --> 01:14:41,839 IN CELLULITIS AND POOR QUALITY 2157 01:14:41,839 --> 01:14:42,807 OF LIFE WERE SOMETHING THAT WAS 2158 01:14:42,807 --> 01:14:46,311 VERY MUCH HIGHLIGHTED AND 2159 01:14:46,311 --> 01:14:47,345 FLARE-UPS, INFECTIONS AND 2160 01:14:47,345 --> 01:14:49,047 CONSTANT PAIN CAN TAKE A VERY 2161 01:14:49,047 --> 01:14:49,914 HEAVY TOLL ON THE QUALITY OF 2162 01:14:49,914 --> 01:14:52,016 LIFE FOR PATIENTS. 2163 01:14:52,016 --> 01:14:53,985 EVERY DAY FEELS LIKE A SURVIVAL 2164 01:14:53,985 --> 01:14:54,852 GAME FOR A LOT OF US. 2165 01:14:54,852 --> 01:14:55,987 OFTEN OUR LIVES ARE SHAPED BY 2166 01:14:55,987 --> 01:14:57,689 HOW WE WAKE UP. 2167 01:14:57,689 --> 01:14:58,790 THAT'S EVEN IF WE'VE BEEN ABLE 2168 01:14:58,790 --> 01:15:03,895 TO SLEEP THE NIGHT BEFORE. 2169 01:15:03,895 --> 01:15:06,864 YOU KNOW, THE MENTAL STRAIN OF 2170 01:15:06,864 --> 01:15:09,400 LIVING WITH SUCH UNPREDICTABLE, 2171 01:15:09,400 --> 01:15:10,134 RELENTLESS SYMPTOMS IS 2172 01:15:10,134 --> 01:15:10,868 EXHAUSTING. 2173 01:15:10,868 --> 01:15:12,003 I'VE HAD MOMENTS WHERE I 2174 01:15:12,003 --> 01:15:15,106 PERSONALLY WANTED TO GIVE UP 2175 01:15:15,106 --> 01:15:18,309 BECAUSE I DIDN'T WANT TO GO SEEK 2176 01:15:18,309 --> 01:15:19,711 HELP BECAUSE NO ONE HAD ANSWERS 2177 01:15:19,711 --> 01:15:20,611 FOR ME. 2178 01:15:20,611 --> 01:15:24,682 I'VE HAD DOCTORS TREAT 2179 01:15:24,682 --> 01:15:26,050 INFECTIONS INCORRECTLY, I'VE 2180 01:15:26,050 --> 01:15:31,122 BEEN GASLIT, AND I'VE HAD 2181 01:15:31,122 --> 01:15:32,590 INFECTIONS TREATED INCORRECTLY. 2182 01:15:32,590 --> 01:15:34,826 THAT LEAVES ME WONDERING AS WELL 2183 01:15:34,826 --> 01:15:37,695 AS OTHERS WONDERING FOR 2184 01:15:37,695 --> 01:15:39,430 THEMSELVES HOW HAS THIS IMPACTED 2185 01:15:39,430 --> 01:15:45,069 MY LYMPHEDEMA LONG TERM. 2186 01:15:45,069 --> 01:15:48,473 WHAT ELSE DID I HAVE HERE? 2187 01:15:48,473 --> 01:15:50,675 THE STRUGGLE THAT DOESN'T JUST 2188 01:15:50,675 --> 01:15:57,281 AFFECT OUR B BODIES, IT EXTENDSO 2189 01:15:57,281 --> 01:15:58,416 EVERY ASPECT OF OUR LIFE. 2190 01:15:58,416 --> 01:16:00,118 IT IMPACT OUR ABILITY TO GO TO 2191 01:16:00,118 --> 01:16:05,823 SCHOOL, TO KEEP T A JOB, BUILD A 2192 01:16:05,823 --> 01:16:06,157 CAREER. 2193 01:16:06,157 --> 01:16:07,191 WHO WOULD HIRE SOMEBODY WHO AT 2194 01:16:07,191 --> 01:16:08,626 THE DROP OF A HAT NEEDS TWO 2195 01:16:08,626 --> 01:16:10,695 WEEKS OFF AT A MOMENT'S NOTICE 2196 01:16:10,695 --> 01:16:11,763 WHEN YOU HAVE AN INFECTION? 2197 01:16:11,763 --> 01:16:13,698 HOW CAN A STUDENT SUCCEED WHEN 2198 01:16:13,698 --> 01:16:15,099 IT FEELS LIKE THE HARDEST THING 2199 01:16:15,099 --> 01:16:16,334 IS SIMPLY GETTING OUT OF BED IN 2200 01:16:16,334 --> 01:16:22,507 THE MORNING? 2201 01:16:22,507 --> 01:16:25,610 AN NOT JUST GETTING OUT OF BED, 2202 01:16:25,610 --> 01:16:26,544 DOING ANYTHING. 2203 01:16:26,544 --> 01:16:28,880 TAKING CARE OF YOURSELF. 2204 01:16:28,880 --> 01:16:29,847 MAINTAINING RELATIONSHIPS, 2205 01:16:29,847 --> 01:16:30,982 STAYING PRODUCTIVE, STAYING ON 2206 01:16:30,982 --> 01:16:32,683 TOP OF DAILY RESPONSIBILITIES 2207 01:16:32,683 --> 01:16:35,052 ALL BECOME AN UPHILL BATTLE. 2208 01:16:35,052 --> 01:16:36,721 EVERY DAY IS A REMINDER OF HOW 2209 01:16:36,721 --> 01:16:38,356 MUCH ENERGY IT TAKES TO SURVIVE, 2210 01:16:38,356 --> 01:16:39,090 NOT EVEN THRIVE. 2211 01:16:39,090 --> 01:16:43,027 THE THIRD ONE IS THE EFFECTS OF 2212 01:16:43,027 --> 01:16:53,538 LYMPHATIC BLEBS, LYMPHORRHEA, 2213 01:16:55,406 --> 01:16:57,108 THE CONSTANT BATTLE WITH SWOLLEN 2214 01:16:57,108 --> 01:16:59,410 PAINFUL LIMBS CAN LEAVE YOU 2215 01:16:59,410 --> 01:17:02,313 FEELING DRAINED AND SELF 2216 01:17:02,313 --> 01:17:02,914 CONSCIOUS. 2217 01:17:02,914 --> 01:17:04,081 IT CAN BECOME PAINFUL REMINDERS 2218 01:17:04,081 --> 01:17:07,051 OF YOUR BODY'S STRUGGLE. 2219 01:17:07,051 --> 01:17:08,019 TOGETHER THESE CONDITIONS CREATE 2220 01:17:08,019 --> 01:17:09,487 A CYCLE OF DISCOMFORT THAT TAKES 2221 01:17:09,487 --> 01:17:12,423 NOT ONLY A PHYSICAL TOLL BUT A 2222 01:17:12,423 --> 01:17:13,524 PROFOUND MENTAL ONE AS WELL 2223 01:17:13,524 --> 01:17:14,592 LEAVING PATIENTS FEELING LIKE 2224 01:17:14,592 --> 01:17:17,562 THEY'RE TRAPPED IN THEIR BODIES. 2225 01:17:17,562 --> 01:17:19,397 AND THE STRUGGLE WITH SELF 2226 01:17:19,397 --> 01:17:23,067 IMAGE, YOU AFTER THESE ALL OF TS 2227 01:17:23,067 --> 01:17:24,802 I'VE MENTIONED CAN DEEPLY AFFECT 2228 01:17:24,802 --> 01:17:25,303 BODY IMAGE. 2229 01:17:25,303 --> 01:17:26,938 GROWING UP, FEELING DIFFERENT IS 2230 01:17:26,938 --> 01:17:34,145 HARD ENOUGH, AND IMAGINE MEET ND 2231 01:17:34,145 --> 01:17:39,550 BEINGNEEDINGONE OR TWO CHANGES S 2232 01:17:39,550 --> 01:17:40,818 BECAUSE YOU START LEAKING LYMPH 2233 01:17:40,818 --> 01:17:41,385 FLUID. 2234 01:17:41,385 --> 01:17:42,353 NO ONE'S GOING TO UNDERSTAND 2235 01:17:42,353 --> 01:17:43,754 THAT, IT'S THANK YOU MILL GATE 2236 01:17:43,754 --> 01:17:44,889 YAITING AND ADD TO THAT THE 2237 01:17:44,889 --> 01:17:46,624 FRUSTRATION OF NOT BEING ABLE TO 2238 01:17:46,624 --> 01:17:47,492 WEAR THE SAME CLOTHES AS 2239 01:17:47,492 --> 01:17:48,359 EVERYONE ELSE. 2240 01:17:48,359 --> 01:17:49,927 YOU KNOW OFTEN YOUR ONLY 2241 01:17:49,927 --> 01:17:51,896 OPTIONS, I KNOW THIS FROM 2242 01:17:51,896 --> 01:17:52,964 PERSONAL EXPERIENCE, ARE THINGS 2243 01:17:52,964 --> 01:17:54,265 THAT MAKE YOU LOOK LIKE YOU'RE 2244 01:17:54,265 --> 01:17:55,833 DRESSED TO GO TO THE SENIOR 2245 01:17:55,833 --> 01:17:57,869 CENTER, NOT GYM CLASS IN GRADE 2246 01:17:57,869 --> 01:17:58,803 2, OR YOU HAVE CLOTHES THAT 2247 01:17:58,803 --> 01:18:00,471 MIGHT FIT YOUR ONE LIMB BUT ARE 2248 01:18:00,471 --> 01:18:01,873 SIX SIZES TOO BIG ON THE OTHER 2249 01:18:01,873 --> 01:18:05,543 SIDE. 2250 01:18:05,543 --> 01:18:07,512 ALSO MISSING SCHOOL BECAUSE YOUR 2251 01:18:07,512 --> 01:18:10,147 BODY WON'T COOPERATE CAN LEAVE 2252 01:18:10,147 --> 01:18:11,549 YOU FEELING LIKE YOU'RE 2253 01:18:11,549 --> 01:18:12,817 CONSTANTLY FALLING BEHIND, WHICH 2254 01:18:12,817 --> 01:18:15,553 IS NEVER A GOOD FEELING. 2255 01:18:15,553 --> 01:18:17,255 AND LASTLY, TRYING TO LOVE 2256 01:18:17,255 --> 01:18:20,291 YOURSELF WHEN YOUR BODY IS SUCH 2257 01:18:20,291 --> 01:18:22,693 A SOURCE OF PAIN AND STRUGGLE IS 2258 01:18:22,693 --> 01:18:23,928 AN OVERWHELMING CHALLENGE. 2259 01:18:23,928 --> 01:18:26,631 I KNOW THIS PERSONALLY. 2260 01:18:26,631 --> 01:18:28,733 IT'S HARD TO FEEL CONFIDENT 2261 01:18:28,733 --> 01:18:30,535 EVERY DAY WHEN YOU'RE IN A 2262 01:18:30,535 --> 01:18:32,470 BATTLE WITH YOUR OWN BODY. 2263 01:18:32,470 --> 01:18:34,338 THESE CONSTANT HURDLES, 2264 01:18:34,338 --> 01:18:36,073 PHYSICAL, MENTAL AND 2265 01:18:36,073 --> 01:18:38,276 EMOTIONALLY, DON'T JUST IMPACT 2266 01:18:38,276 --> 01:18:40,211 HOW WE SEE OURSELVES, BUT THEY 2267 01:18:40,211 --> 01:18:43,714 CAN RESHAPE OUR ENTIRE SENSE OF 2268 01:18:43,714 --> 01:18:44,916 SELF-WORTH AND I THINK AT THE 2269 01:18:44,916 --> 01:18:50,421 END OF THE DAY, WE DESERVE 2270 01:18:50,421 --> 01:18:51,889 UNDERSTANDING, COMPASSION, THE 2271 01:18:51,889 --> 01:18:52,990 FREEDOM TO FEEL COMFORTABLE IN 2272 01:18:52,990 --> 01:18:55,326 OUR OWN SKIN AND PROPER CARE, 2273 01:18:55,326 --> 01:18:56,861 WHETHER THAT'S LYMPHEDEMA 2274 01:18:56,861 --> 01:19:00,197 THERAPISTS, DOCTORS, EMERGENCY 2275 01:19:00,197 --> 01:19:01,232 TREATMENT, WE NEED BETTER 2276 01:19:01,232 --> 01:19:01,999 UNDERSTANDING AT THE END OF THE 2277 01:19:01,999 --> 01:19:02,199 DAY. 2278 01:19:02,199 --> 01:19:04,302 THANK YOU. 2279 01:19:04,302 --> 01:19:05,536 >> THANK YOU VERY MUCH, 2280 01:19:05,536 --> 01:19:10,308 MELLENNEE AND SINEAD, FOR THIS 2281 01:19:10,308 --> 01:19:11,309 POWERFUL PRESENTATION. 2282 01:19:11,309 --> 01:19:13,044 WE ARE MOVING TO THE NEXT 2283 01:19:13,044 --> 01:19:22,053 SPEAKER, DR. ANEEM ANIL HINGORD 2284 01:19:22,053 --> 01:19:22,853 HE WILL BE PRESENTING NEXT. 2285 01:19:22,853 --> 01:19:25,056 >> I WANT TO THANK THE 2286 01:19:25,056 --> 01:19:26,591 ORGANIZERS FOR PUTTING THIS 2287 01:19:26,591 --> 01:19:29,493 EXCELLENT SYMPOSIUM -- INVITING 2288 01:19:29,493 --> 01:19:29,760 ME. 2289 01:19:29,760 --> 01:19:31,662 I ALSO WANT TO THANK ALL OF THE 2290 01:19:31,662 --> 01:19:33,531 SPEAKERS BECAUSE THEY'VE DONE AN 2291 01:19:33,531 --> 01:19:35,199 EXCELLENT JOB AND A LOT OF MY 2292 01:19:35,199 --> 01:19:36,267 WORK HAS ALREADY BEEN STATED. 2293 01:19:36,267 --> 01:19:37,401 I DO HAVE A CONFLICT OF 2294 01:19:37,401 --> 01:19:37,935 INTEREST. 2295 01:19:37,935 --> 01:19:40,304 I DO SIT ON THE SCIENTIFIC 2296 01:19:40,304 --> 01:19:41,739 ADVISORY BOARD FOR ADVANCED 2297 01:19:41,739 --> 01:19:48,079 OXYGEN THERAPY INCORPORATED. 2298 01:19:48,079 --> 01:19:50,114 SO WHAT IS THE AMERICAN VENOUS 2299 01:19:50,114 --> 01:19:50,615 FORUM? 2300 01:19:50,615 --> 01:19:52,216 IT'S DESIGNED -- IT'S AN 2301 01:19:52,216 --> 01:19:53,551 ORGANIZATION, IT AN 2302 01:19:53,551 --> 01:19:54,151 INTERNATIONAL ORGANIZATION 2303 01:19:54,151 --> 01:19:55,386 THAT'S BEEN AROUND FOR OVER 20 2304 01:19:55,386 --> 01:19:57,488 YEARS, BUT IT HELPS PROMOTE 2305 01:19:57,488 --> 01:19:59,924 VENOUS AND LYMPHATIC HEALTH 2306 01:19:59,924 --> 01:20:00,157 OVERALL. 2307 01:20:00,157 --> 01:20:01,792 ITS MISSION IS TO ADVANCE THE 2308 01:20:01,792 --> 01:20:04,328 SCIENCE, EDUCATION, ADVOCACY IN 2309 01:20:04,328 --> 01:20:06,197 VENOUS AND LYMPHATIC DISEASES, 2310 01:20:06,197 --> 01:20:07,298 WHICH WE'RE ALL TALKING ABOUT 2311 01:20:07,298 --> 01:20:15,539 TODAY. 2312 01:20:15,539 --> 01:20:17,608 I LIVE HERE IN SOUTH BROOKLYN, 2313 01:20:17,608 --> 01:20:19,343 PRACTICING HERE SINCE 1998, AND 2314 01:20:19,343 --> 01:20:20,745 OVER THE LAST 20-ODD YEARS, 2315 01:20:20,745 --> 01:20:22,346 WE'VE HAD AN INCREASING NUMBER 2316 01:20:22,346 --> 01:20:23,948 OF PATIENTS WHO WERE REFERRED TO 2317 01:20:23,948 --> 01:20:25,683 US WITH LYMPHEDEMA. 2318 01:20:25,683 --> 01:20:28,119 OFTEN AS THE OTHER SPEAKERS HAVE 2319 01:20:28,119 --> 01:20:29,987 SAID, THEY'VE BEEN TO MULTIPLE 2320 01:20:29,987 --> 01:20:33,357 PRACTITIONERS OVER MULTIPLE 2321 01:20:33,357 --> 01:20:34,659 YEARS, AND VERY OFTEN WE JUST 2322 01:20:34,659 --> 01:20:35,893 COME INTO THE ROOM AND LOOK AT 2323 01:20:35,893 --> 01:20:37,361 THEM AND SAY WE HAVE YOUR 2324 01:20:37,361 --> 01:20:39,063 DIAGNOSIS JUST BY EXAM. 2325 01:20:39,063 --> 01:20:40,197 UNFORTUNATELY, WE DON'T HAVE A 2326 01:20:40,197 --> 01:20:43,734 LOT OF GOOD DIAGNOSTIC TOOLS OR 2327 01:20:43,734 --> 01:20:45,636 TREATMENT OPTIONS, AND THE 2328 01:20:45,636 --> 01:20:47,038 REALITY IS OVER THE LAST 20 2329 01:20:47,038 --> 01:20:48,939 YEARS, THE RATE OF IMPROVEMENT 2330 01:20:48,939 --> 01:20:53,644 IN TERMS OF DIAGNOSTIC TOOLS OR 2331 01:20:53,644 --> 01:20:54,779 EVEN THERAPEUTIC TOOLS HAS BEEN 2332 01:20:54,779 --> 01:20:56,180 VERY SLOW AND I WOULD ACTUALLY 2333 01:20:56,180 --> 01:20:58,082 DESCRIBE IT AS GLACIAL. 2334 01:20:58,082 --> 01:21:01,452 WHICH HELPS UNDERLYING THE 2335 01:21:01,452 --> 01:21:02,486 REASONS WHY WE'RE ALL HERE 2336 01:21:02,486 --> 01:21:03,721 TODAY, AND ONE OF THE WISH LISTS 2337 01:21:03,721 --> 01:21:07,258 THAT WE WOULD LIKE TO TALK ABOUT 2338 01:21:07,258 --> 01:21:08,626 IS OF COURSE WE ALL TALK ABOUT 2339 01:21:08,626 --> 01:21:09,260 MORE RESEARCH BECAUSE I THINK 2340 01:21:09,260 --> 01:21:11,462 THAT WOULD BE THE WAY FORWARD TO 2341 01:21:11,462 --> 01:21:13,431 HELP IMPROVE DIAGNOSIS AND 2342 01:21:13,431 --> 01:21:15,733 TREATMENT, THAT ALSO -- WE ALSO 2343 01:21:15,733 --> 01:21:17,168 HAVE A PROBLEM WITH EDUCATION, 2344 01:21:17,168 --> 01:21:18,969 NOT ONLY OF PRACTITIONERS AS THE 2345 01:21:18,969 --> 01:21:22,006 OTHER SPEAKERS HAVE POINTED OUT 2346 01:21:22,006 --> 01:21:23,407 BUT ALSO PATIENTS OFTEN COME IN 2347 01:21:23,407 --> 01:21:24,508 SAYING I THINK I MIGHT HAVE THIS 2348 01:21:24,508 --> 01:21:26,077 BUT I DON'T REALLY KNOW, I'VE 2349 01:21:26,077 --> 01:21:27,778 DONE SOME RESEARCH ONLINE, I'M 2350 01:21:27,778 --> 01:21:29,447 NOT REALLY CERTAIN, COULD IT BE 2351 01:21:29,447 --> 01:21:30,414 THIS OR THIS. 2352 01:21:30,414 --> 01:21:32,383 BUT PATIENT EDUCATION WAS ALSO A 2353 01:21:32,383 --> 01:21:32,717 PROBLEM. 2354 01:21:32,717 --> 01:21:35,920 WE'RE REALLY NOT GETTING THE 2355 01:21:35,920 --> 01:21:37,588 WORD OUT, AND ONE THING I'VE 2356 01:21:37,588 --> 01:21:40,391 ALSO NOTICED IS THAT EACH ONE OF 2357 01:21:40,391 --> 01:21:41,592 US IN OUR ORGANIZATIONS HAVE 2358 01:21:41,592 --> 01:21:42,860 SOME REALLY GREAT TOOLS AND HAVE 2359 01:21:42,860 --> 01:21:44,161 DONE SOME REALLY GREAT WORK OVER 2360 01:21:44,161 --> 01:21:45,429 THE LAST COUPLE YEARS, BUT WE'RE 2361 01:21:45,429 --> 01:21:46,630 NOT WORKING TOGETHER, AND I 2362 01:21:46,630 --> 01:21:48,799 THINK THIS PLATFORM BRINGING ALL 2363 01:21:48,799 --> 01:21:51,769 OF US TOGETHER OFFERS US 2364 01:21:51,769 --> 01:21:52,870 OPPORTUNITIES TO REALLY HELP 2365 01:21:52,870 --> 01:21:53,938 OVERCOME SOME OF THE BARRIERS 2366 01:21:53,938 --> 01:21:56,640 THAT WE ALL HAVE TO POOL OUR 2367 01:21:56,640 --> 01:21:58,776 RESOURCES, POOL OUR IDEAS AND 2368 01:21:58,776 --> 01:22:00,077 POOL THE WAY -- HOPEFULLY THE 2369 01:22:00,077 --> 01:22:05,249 WAY FORWARD. 2370 01:22:05,249 --> 01:22:07,318 SO THE REASON WHY WE'RE SEEING 2371 01:22:07,318 --> 01:22:09,487 SO MUCH LYMPHEDEMA AT LEAST IN 2372 01:22:09,487 --> 01:22:10,488 OUR PATIENT POPULATION IS OUR 2373 01:22:10,488 --> 01:22:11,188 AGING POPULATION. 2374 01:22:11,188 --> 01:22:13,057 THIS IS A PROBLEM WORLDWIDE. 2375 01:22:13,057 --> 01:22:14,024 WORLDWIDE WE'RE GETTING OLDER 2376 01:22:14,024 --> 01:22:16,327 AND WE'RE GETTING MORE OBESE. 2377 01:22:16,327 --> 01:22:21,065 WE'RE ALSO SEEING MUCH MORE 2378 01:22:21,065 --> 01:22:21,665 LYMPHOVENOSTASIS DISEASE WHICH 2379 01:22:21,665 --> 01:22:22,600 ALSO CAN BE CONTRIBUTED TO THE 2380 01:22:22,600 --> 01:22:30,107 AGING POPULATION AND OBESITY. 2381 01:22:30,107 --> 01:22:33,410 SO WE ALSO SAID THAT OFTEN 2382 01:22:33,410 --> 01:22:34,612 PATIENTS ARE REFERRED AFTER 2383 01:22:34,612 --> 01:22:36,947 SEEING MULTIPLE PRACTITIONERS, 2384 01:22:36,947 --> 01:22:39,617 WE ALSO HAVE LIMITED RESOURCES 2385 01:22:39,617 --> 01:22:40,751 FOR DIAGNOSIS AND TREATMENT. 2386 01:22:40,751 --> 01:22:42,219 IT'S NOT ONLY THE LOCAL LEVEL 2387 01:22:42,219 --> 01:22:43,187 BUT IT'S AT THE NATIONAL LEVEL, 2388 01:22:43,187 --> 01:22:44,421 AND THESE TYPES OF PROBLEMS NEED 2389 01:22:44,421 --> 01:22:46,123 TO BE ADDRESSED ACROSS THE 2390 01:22:46,123 --> 01:22:49,460 NATION, AND I WOULD EVEN SAY 2391 01:22:49,460 --> 01:22:50,294 THAT INTERNATIONAL COOPERATION 2392 01:22:50,294 --> 01:22:51,295 IS EVEN MORE IMPORTANT, BECAUSE 2393 01:22:51,295 --> 01:22:52,830 I DO FEEL THAT OTHER COUNTRIES 2394 01:22:52,830 --> 01:22:54,965 ARE SEEING THESE TYPES OF 2395 01:22:54,965 --> 01:22:55,399 PROBLEMS ALSO. 2396 01:22:55,399 --> 01:22:56,534 LIKE GOING TO MEETINGS AND 2397 01:22:56,534 --> 01:22:58,269 FINDING OUT MORE AND MORE PEOPLE 2398 01:22:58,269 --> 01:23:01,038 INTERESTED IN RESEARCH, BETTER 2399 01:23:01,038 --> 01:23:03,207 DIAGNOSIS, WE ARE GETTING BETTER 2400 01:23:03,207 --> 01:23:05,142 DIAGNOSTIC TOOLS BUT I STILL 2401 01:23:05,142 --> 01:23:06,210 WOULD SAY THEY ARE AT BEST 2402 01:23:06,210 --> 01:23:10,881 RUDIMENTARY. 2403 01:23:10,881 --> 01:23:13,117 SOME OF THE LIMITED RESEARCH, I 2404 01:23:13,117 --> 01:23:14,418 DO THINK WE NEED BETTER TOOLS 2405 01:23:14,418 --> 01:23:14,885 FOR DEFINITION. 2406 01:23:14,885 --> 01:23:16,487 WE HAVE SOME TOOLS THAT HAVE 2407 01:23:16,487 --> 01:23:17,354 DEVELOPED OVER THE LAST COUPLE 2408 01:23:17,354 --> 01:23:19,023 OF YEARS FOR DIAGNOSIS. 2409 01:23:19,023 --> 01:23:20,257 WE HAVE SOME TREATMENTS WHICH 2410 01:23:20,257 --> 01:23:21,759 ARE BETTER THAN THEY WERE 20 2411 01:23:21,759 --> 01:23:24,061 YEARS AGO BUT I WOULD SAY THE 2412 01:23:24,061 --> 01:23:25,629 REASON WHY WE'RE NOT GETTING 2413 01:23:25,629 --> 01:23:26,397 BETTER DIAGNOSIS AND TREATMENT 2414 01:23:26,397 --> 01:23:27,698 IS WE DON'T UNDERSTAND THE 2415 01:23:27,698 --> 01:23:29,200 DISEASE PROCESSES. 2416 01:23:29,200 --> 01:23:30,701 ONE OF THE AREAS OF FOCUS FOR 2417 01:23:30,701 --> 01:23:34,271 THE AMERICAN VENOUS FORUM IS 2418 01:23:34,271 --> 01:23:37,241 USING NEWER TOOLS FOR DIAGNOSIS, 2419 01:23:37,241 --> 01:23:40,044 NEWER TOOLS FOR BASIC SCIENCE. 2420 01:23:40,044 --> 01:23:41,378 WHY DO PATIENTS GET THE 2421 01:23:41,378 --> 01:23:43,247 SWELLING, WHY DO THEY GET 2422 01:23:43,247 --> 01:23:45,115 CHANGES IN LYMPHEDEMA, FOR 2423 01:23:45,115 --> 01:23:46,851 EXAMPLE LOOKING AT THE 2424 01:23:46,851 --> 01:23:47,484 GLYCOCALYX OF THE LYMPHATIC 2425 01:23:47,484 --> 01:23:48,485 SYSTEM IS SOMETHING WE'VE BEEN 2426 01:23:48,485 --> 01:23:49,653 INTERESTED IN RECENTLY, AND 2427 01:23:49,653 --> 01:23:52,923 BETTER TREATMENT OPTIONS. 2428 01:23:52,923 --> 01:23:53,424 ADVOCACY IS KEY. 2429 01:23:53,424 --> 01:23:54,792 I THINK THAT'S ONE OF THE MAIN 2430 01:23:54,792 --> 01:23:56,760 REASONS WHY WE'VE MADE SOME 2431 01:23:56,760 --> 01:23:57,528 IMPROVEMENTS IN SOME OF THE 2432 01:23:57,528 --> 01:24:02,132 TECHNOLOGY WE HAVE AVAILABLE TO 2433 01:24:02,132 --> 01:24:03,500 OUR LYMPHEDEMA PATIENTS. 2434 01:24:03,500 --> 01:24:05,269 WE DO NEED TO HAVE MORE 2435 01:24:05,269 --> 01:24:05,936 COLLABORATIVE EFFORTS. 2436 01:24:05,936 --> 01:24:07,171 WE DID MENTION EARLIER ABOUT 2437 01:24:07,171 --> 01:24:08,138 LACK OF PUBLIC AWARENESS AND 2438 01:24:08,138 --> 01:24:10,641 LACK OF AWARENESS AMONG 2439 01:24:10,641 --> 01:24:15,312 PRACTITIONERS. 2440 01:24:15,312 --> 01:24:16,447 I THINK THIS IS THE NEXT TALK 2441 01:24:16,447 --> 01:24:18,449 BUT I ACTUALLY HAVE A PERSON 2442 01:24:18,449 --> 01:24:21,652 WITH US WHO HAS RECENTLY COME TO 2443 01:24:21,652 --> 01:24:24,121 OUR OFFICE WITH HER SON WHO WAS 2444 01:24:24,121 --> 01:24:26,090 DIAGNOSED WITH LYMPHEDEMA AFTER 2445 01:24:26,090 --> 01:24:27,124 MANY YEARS. 2446 01:24:27,124 --> 01:24:28,225 MRS. MENDEZ, WOULD YOU ABLE TO 2447 01:24:28,225 --> 01:24:29,293 TALK ABOUT YOUR EXPERIENCE WITH 2448 01:24:29,293 --> 01:24:30,861 YOUR DIAGNOSIS WITH LYMPHEDEMA 2449 01:24:30,861 --> 01:24:32,630 AND YOUR SON'S DIAGNOSIS? 2450 01:24:32,630 --> 01:24:33,864 I THINK YOU HAVE A UNIQUE 2451 01:24:33,864 --> 01:24:44,074 EXPERIENCE. 2452 01:24:45,109 --> 01:24:48,712 >> MS. MENDEZ, IF YOU CAN TURN 2453 01:24:48,712 --> 01:24:49,980 THE AUDIO ON, YOU CAN UNMUTE 2454 01:24:49,980 --> 01:24:54,018 YOURSELF. 2455 01:24:54,018 --> 01:24:56,353 OR OUR TECHNICAL STAFF CAN HELP 2456 01:24:56,353 --> 01:25:06,563 YOU UNMUTE? 2457 01:25:10,901 --> 01:25:11,101 ALL RIGHT. 2458 01:25:11,101 --> 01:25:18,709 THANK YOU. 2459 01:25:18,709 --> 01:25:20,811 ALSO IF YOU CAN UNMUTE YOURSELF, 2460 01:25:20,811 --> 01:25:21,545 MARY? 2461 01:25:21,545 --> 01:25:23,681 >> MY NAME IS MARY MENDEZ. 2462 01:25:23,681 --> 01:25:32,990 I HAVE A SON NAMED AARON YOU GO 2463 01:25:32,990 --> 01:25:33,724 GUERERRO. 2464 01:25:33,724 --> 01:25:37,728 HE HAS AUTISM AND ALSO HAS BEEN 2465 01:25:37,728 --> 01:25:39,196 DIAGNOSED FOR LYMPHEDEMA. 2466 01:25:39,196 --> 01:25:43,000 I ALSO WAS DIAGNOSED IN LIKE 2467 01:25:43,000 --> 01:25:52,109 '22, 2022, WITH LYMPHEDEMA ALSO. 2468 01:25:52,109 --> 01:25:55,579 HE HAS HYPERTENSION, I HAVE 2469 01:25:55,579 --> 01:25:59,984 HYPERTENSION. 2470 01:25:59,984 --> 01:26:05,089 BASICALLY THIS DISEASE, IT'S 2471 01:26:05,089 --> 01:26:07,925 DIFFICULT BECAUSE, YOU KNOW, 2472 01:26:07,925 --> 01:26:13,697 SWELLING OF THE LEGS, YOU KNOW, 2473 01:26:13,697 --> 01:26:16,867 IT AFFECTS YOUR WALKING ABILITY, 2474 01:26:16,867 --> 01:26:18,235 LIKE I KNOW IT AFFECTS ME WHEN I 2475 01:26:18,235 --> 01:26:26,410 WALK, BUT I ALSO HAVE THE 2476 01:26:26,410 --> 01:26:28,979 DIABETES, I ALSO HAVE DIABETES. 2477 01:26:28,979 --> 01:26:31,782 HE HAS DIABETES. 2478 01:26:31,782 --> 01:26:34,852 WELL, HE WASN'T DIAGNOSED WITH 2479 01:26:34,852 --> 01:26:37,421 DIABETES, BUT THEY'RE GIVING HIM 2480 01:26:37,421 --> 01:26:39,690 THE METFORMIN AT THE RESIDENCE 2481 01:26:39,690 --> 01:26:41,125 THAT HE'S AT. 2482 01:26:41,125 --> 01:26:45,062 SO IT JUST -- YOU KNOW, I HAVE 2483 01:26:45,062 --> 01:26:47,598 EDEMA. 2484 01:26:47,598 --> 01:26:49,767 SO I HAVE A LOT OF EDEMA, I HAVE 2485 01:26:49,767 --> 01:26:52,336 TO TAKE WATER PILLS. 2486 01:26:52,336 --> 01:26:56,106 TWO WATER PILLS. 2487 01:26:56,106 --> 01:26:57,541 AND IF I DON'T TAKE THE WATER 2488 01:26:57,541 --> 01:27:00,811 PILL, I GET ALL -- YOU KNOW, 2489 01:27:00,811 --> 01:27:03,881 FILLED WITH FLUID, SO I KNOW 2490 01:27:03,881 --> 01:27:07,851 HE'S NOT ON A WATER PILL. 2491 01:27:07,851 --> 01:27:09,253 SO I DON'T KNOW IF ANYBODY WANTS 2492 01:27:09,253 --> 01:27:11,055 TO ASK ME ANYTHING? 2493 01:27:11,055 --> 01:27:13,557 >> MS. MENDEZ, CAN YOU JUST 2494 01:27:13,557 --> 01:27:14,425 DESCRIBE YOUR EXPERIENCE WITH 2495 01:27:14,425 --> 01:27:16,126 EITHER YOU OR YOUR SON, HOW YOU 2496 01:27:16,126 --> 01:27:19,463 WERE DIAGNOSED IN AS MUCH 2497 01:27:19,463 --> 01:27:20,364 THAT -- IT SOUNDED LIKE IT TOOK 2498 01:27:20,364 --> 01:27:21,698 A FEW YEARS THAT YOU HAD YOUR 2499 01:27:21,698 --> 01:27:22,499 SYMPTOMS BEFORE YOUR DIAGNOSIS 2500 01:27:22,499 --> 01:27:25,436 AND YOUR SON. 2501 01:27:25,436 --> 01:27:26,937 ALSO, LIKE HE HAD 2502 01:27:26,937 --> 01:27:28,739 HIS SWELLING FOR QUITE A WHILE 2503 01:27:28,739 --> 01:27:29,473 BEFORE HE WAS -- 2504 01:27:29,473 --> 01:27:31,241 >> YES, YOU KNOW, WHAT HAPPENED 2505 01:27:31,241 --> 01:27:34,511 WAS THAT I ALWAYS HAD THE EDEMA. 2506 01:27:34,511 --> 01:27:38,348 I HAD EDEMA FOR A LONG TIME, SO 2507 01:27:38,348 --> 01:27:40,918 YOU KNOW, I DIDN'T THINK -- ALL 2508 01:27:40,918 --> 01:27:42,586 OF A SUDDEN MY LEGS STARTED 2509 01:27:42,586 --> 01:27:44,054 GETTING REALLY SWOLLEN, YOU 2510 01:27:44,054 --> 01:27:46,457 KNOW? 2511 01:27:46,457 --> 01:27:57,000 SO YOU KNOW, IT'S JUST -- I HAVE 2512 01:27:57,801 --> 01:27:59,470 NEUROPATHY ALSO, SO THAT I GOT 2513 01:27:59,470 --> 01:28:03,874 THIS -- YOU KNOW, PAIN IN MY 2514 01:28:03,874 --> 01:28:07,177 LEGS. 2515 01:28:07,177 --> 01:28:11,748 PAIN WHEN I'M WALKING. 2516 01:28:11,748 --> 01:28:16,120 I'VE HAD FALLS, LIKE IT'S REALLY 2517 01:28:16,120 --> 01:28:19,323 WEIRD, BUT ALL OF A SUDDEN, YOU 2518 01:28:19,323 --> 01:28:23,227 KNOW, THIS IS GOING BACK A FEW 2519 01:28:23,227 --> 01:28:25,562 YEARS, I WOULD FALL. 2520 01:28:25,562 --> 01:28:27,898 I WOULD ALWAYS TRIP OVER CRACKS 2521 01:28:27,898 --> 01:28:29,933 IN THE SIDEWALKS. 2522 01:28:29,933 --> 01:28:31,168 AND I MEAN, I WOULD FALL. 2523 01:28:31,168 --> 01:28:37,407 I ACTUALLY HAD A FALL 2 1/2 2524 01:28:37,407 --> 01:28:41,044 WEEKS AGO, WHEN I FELL IN -- 2525 01:28:41,044 --> 01:28:44,548 FIRST I FELL LIKE ON THE FRIDAY 2526 01:28:44,548 --> 01:28:47,784 GOING TO CATCH THE BUS, BUT IT 2527 01:28:47,784 --> 01:28:49,052 WAS MY CARRIAGE'S FAULT BECAUSE 2528 01:28:49,052 --> 01:28:50,988 IT HOOKED UP TO SOMETHING, AND 2529 01:28:50,988 --> 01:28:54,458 THEN THE NEXT DAY, I WAS GOING 2530 01:28:54,458 --> 01:28:58,795 IN TO BROOKLYN AND I HAD A FALL 2531 01:28:58,795 --> 01:29:00,464 IN WENDY'S, IN THE BATHROOM. 2532 01:29:00,464 --> 01:29:06,403 SO IT'S JUST -- YOU KNOW, 2533 01:29:06,403 --> 01:29:09,840 DIFFICULT, IT BEEN DIFFICULT. 2534 01:29:09,840 --> 01:29:16,280 MY SON, WHEN HE GOT THIS 2535 01:29:16,280 --> 01:29:18,749 LYMPHADEMA AND LEAKY VEINS, WHAT 2536 01:29:18,749 --> 01:29:19,650 HAPPENED WAS THAT NOBODY KNEW 2537 01:29:19,650 --> 01:29:20,584 ABOUT IT. 2538 01:29:20,584 --> 01:29:22,653 HE WAS IN A RESIDENCE, HE CAME 2539 01:29:22,653 --> 01:29:26,023 TO SEE ME -- I BRING HIM EVERY 2540 01:29:26,023 --> 01:29:28,625 OTHER WEEKEND TO MY HOUSE, SO HE 2541 01:29:28,625 --> 01:29:30,661 PUT ON HIS PAJAMAS, YOU KNOW, HE 2542 01:29:30,661 --> 01:29:32,396 DOES HIS OWN ROUTINE. 2543 01:29:32,396 --> 01:29:35,499 I DIDN'T KNOW HIS LEGS WERE 2544 01:29:35,499 --> 01:29:37,234 SWOLLEN LIKE THAT. 2545 01:29:37,234 --> 01:29:39,236 BECAUSE HE GOES, TAKES A BATH, 2546 01:29:39,236 --> 01:29:41,805 PUTS ON HIS PAJAMAS, THEN HE 2547 01:29:41,805 --> 01:29:42,906 DRESSES AND NOBODY HAS SEEN HIS 2548 01:29:42,906 --> 01:29:43,941 LEGS. 2549 01:29:43,941 --> 01:29:45,909 WHEN HE GOT BACK TO THE 2550 01:29:45,909 --> 01:29:49,413 RESIDENCE AND THEY -- THEY 2551 01:29:49,413 --> 01:29:51,248 NOTICED THAT HIS LEGS WERE ALL 2552 01:29:51,248 --> 01:29:51,782 SWOLLEN. 2553 01:29:51,782 --> 01:29:55,786 HE HAD THE CELLULITIS. 2554 01:29:55,786 --> 01:29:56,019 SO -- 2555 01:29:56,019 --> 01:29:57,788 >> MS. MENDEZ, THANK YOU. 2556 01:29:57,788 --> 01:29:58,622 >> YEAH. 2557 01:29:58,622 --> 01:29:59,723 >> I DO THINK WE HAVE TO MOVE 2558 01:29:59,723 --> 01:30:00,324 ON. 2559 01:30:00,324 --> 01:30:01,858 THANK YOU, MRS. MENDEZ, YOUR 2560 01:30:01,858 --> 01:30:03,126 CONTRIBUTION AND THOSE OF THE 2561 01:30:03,126 --> 01:30:03,794 OTHER PATIENT REPRESENTATIVES 2562 01:30:03,794 --> 01:30:04,995 ARE VERY HELPFUL. 2563 01:30:04,995 --> 01:30:08,031 THEY REALLY HELP BRIDGE THE GAP 2564 01:30:08,031 --> 01:30:08,832 BETWEEN WHAT'S ACTUALLY 2565 01:30:08,832 --> 01:30:10,901 HAPPENING WITH THE PATIENTS, THE 2566 01:30:10,901 --> 01:30:11,668 CLINICIANS, AND THOSE WHO CAN 2567 01:30:11,668 --> 01:30:11,902 HELP US. 2568 01:30:11,902 --> 01:30:14,104 THANK YOU. 2569 01:30:14,104 --> 01:30:14,838 >> THANK YOU VERY MUCH. 2570 01:30:14,838 --> 01:30:19,176 THANK YOU. 2571 01:30:19,176 --> 01:30:24,181 NEXT WE ARE GOING TO HEAR FROM 2572 01:30:24,181 --> 01:30:25,249 DR. LINDSAY HOY. 2573 01:30:25,249 --> 01:30:27,918 SHE'S THE CHIEF MISSION OFFICER 2574 01:30:27,918 --> 01:30:30,254 AND VICE CHAIR OF THE 2575 01:30:30,254 --> 01:30:30,787 LYMPHANGIOLEIOMYOMATOSIS 2576 01:30:30,787 --> 01:30:34,124 FOUNDATION AND ALSO DR. FRANCIS 2577 01:30:34,124 --> 01:30:35,525 MCCORMACK, EMERITUS, SCIENTIFIC 2578 01:30:35,525 --> 01:30:38,161 DIRECTOR OF THE SAME FOUNDATION. 2579 01:30:38,161 --> 01:30:38,595 >> GREAT. 2580 01:30:38,595 --> 01:30:39,730 THANK YOU, SELEN. 2581 01:30:39,730 --> 01:30:41,331 I'LL BE SPEAKING WITHOUT SLIDES 2582 01:30:41,331 --> 01:30:43,500 FOR THE FIRST FEW MINUTES. 2583 01:30:43,500 --> 01:30:44,501 GOOD MORNING, EVERYONE. 2584 01:30:44,501 --> 01:30:46,270 MY NAME IS DR. LINDSAY HOY, AND 2585 01:30:46,270 --> 01:30:48,572 I'M THE CHIEF MISSION OFFICER AT 2586 01:30:48,572 --> 01:30:50,340 THE LAM FOUNDATION AND A LAM 2587 01:30:50,340 --> 01:30:50,874 PATIENT MYSELF. 2588 01:30:50,874 --> 01:30:52,276 FOR NEARLY 30 YEARS, WE'VE 2589 01:30:52,276 --> 01:30:53,610 DEDICATED OURSELVES TO 2590 01:30:53,610 --> 01:30:56,713 TRANSFORMING THE LIVES OF WOMEN 2591 01:30:56,713 --> 01:30:57,814 WITH LYMPHANGIOLEIOMYOMATOSIS OR 2592 01:30:57,814 --> 01:30:59,383 LAM, A RARE PROGRESSIVE DISEASE 2593 01:30:59,383 --> 01:31:01,351 THAT PRIMARILY IMPACTS WOMEN IN 2594 01:31:01,351 --> 01:31:04,721 THEIR CHILD BEARING YEARS. 2595 01:31:04,721 --> 01:31:07,891 LA MSM IS OFTEN MISDIAGNOSED, 2596 01:31:07,891 --> 01:31:12,596 AND ITS PULMONARY, RENAL AND 2597 01:31:12,596 --> 01:31:13,864 LYMPHATIC CHALLENGES CAN 2598 01:31:13,864 --> 01:31:14,765 SEVERELY IMPACT QUALITY OF LIFE. 2599 01:31:14,765 --> 01:31:19,303 TODAY I WANT TO SHARE TWO 2600 01:31:19,303 --> 01:31:19,870 STORIES. 2601 01:31:19,870 --> 01:31:21,838 IN KRISTEN'S WORDS, HER JOURNEY 2602 01:31:21,838 --> 01:31:23,407 BEGAN IN AUGUST OF 2021, WHEN 2603 01:31:23,407 --> 01:31:24,241 SHE WENT TO THE EMERGENCY ROOM 2604 01:31:24,241 --> 01:31:31,014 WITH HE IS VEER SHO SEVERE SHOR. 2605 01:31:31,014 --> 01:31:32,249 SHE WAS DIAGNOSED WITH LAM. 2606 01:31:32,249 --> 01:31:34,151 FROM THERE, KRISTEN FACED NINE 2607 01:31:34,151 --> 01:31:35,686 AGONIZING MONTHS OF 2608 01:31:35,686 --> 01:31:36,787 HOSPITALIZATIONS, INVASIVE 2609 01:31:36,787 --> 01:31:38,422 PROCEDURES, AND RELENTLESS FLUID 2610 01:31:38,422 --> 01:31:39,056 BUILDUP. 2611 01:31:39,056 --> 01:31:40,424 DURING HER FIRST HOSPITALIZATION 2612 01:31:40,424 --> 01:31:42,826 ALONE, SHE UNDERWENT A THORACIC 2613 01:31:42,826 --> 01:31:44,961 BIOPSY, THORACIC DUCT STAPLING 2614 01:31:44,961 --> 01:31:46,463 AND TWO PLEUR DESEES, NONE OF 2615 01:31:46,463 --> 01:31:47,364 WHICH CONTROLLED THE EFFUSION. 2616 01:31:47,364 --> 01:31:49,132 SHE LATER LEARNED THESE 2617 01:31:49,132 --> 01:31:50,667 INTERVENTIONS MAY HAVE DONE MORE 2618 01:31:50,667 --> 01:31:51,768 HARM THAN GOOD. 2619 01:31:51,768 --> 01:31:53,870 OVER THE ENSUING MONTHS, KRISTEN 2620 01:31:53,870 --> 01:31:55,672 ENDURED MULTIPLE MORE E.D. 2621 01:31:55,672 --> 01:31:56,873 VISITS, CHEST TUBES, SEMI 2622 01:31:56,873 --> 01:31:58,442 PERMANENT DRAINS, SHE LOST 2623 01:31:58,442 --> 01:32:02,079 NEARLY 40 POUNDS, RELIED ON 24/D 2624 01:32:02,079 --> 01:32:03,880 FELT AS SHE PUT IT LIKE SHE WAS 2625 01:32:03,880 --> 01:32:05,315 DYING. 2626 01:32:05,315 --> 01:32:06,783 FINALLY, THROUGH ANOTHER LAM 2627 01:32:06,783 --> 01:32:08,418 PATIENT, KRISTEN WAS REFERRED TO 2628 01:32:08,418 --> 01:32:12,222 DR. MAX ITKIN AT PENN WHO 2629 01:32:12,222 --> 01:32:13,724 PERFORMED MRI GUIDED MAPPING TO 2630 01:32:13,724 --> 01:32:15,359 LOCATE HER LYMPHATIC LEAKS AND 2631 01:32:15,359 --> 01:32:17,627 DURING A MONTH LONG 2632 01:32:17,627 --> 01:32:19,029 HOSPITALIZATION COMPLETED TWO 2633 01:32:19,029 --> 01:32:20,497 PROCEDURES TO SEAL THEM. 2634 01:32:20,497 --> 01:32:22,699 THIS TRULY MARKED A TRUE TURNING 2635 01:32:22,699 --> 01:32:23,567 POINT IN HER CARE. 2636 01:32:23,567 --> 01:32:25,769 BY THE TIME SHE RETURNED HOME, 2637 01:32:25,769 --> 01:32:27,537 SHE NO LONGER NEEDED DRAINS OR 2638 01:32:27,537 --> 01:32:28,271 SUPPLEMENTAL NUTRITION. 2639 01:32:28,271 --> 01:32:29,840 KRISTEN IS NOW THANKFULLY STABLE 2640 01:32:29,840 --> 01:32:31,508 BUT OFTEN REFLECTS ON HOW 2641 01:32:31,508 --> 01:32:33,076 DIFFERENT HER JOURNEY COULD HAVE 2642 01:32:33,076 --> 01:32:34,644 BEEN IF SHE HAD BEEN REFERRED TO 2643 01:32:34,644 --> 01:32:36,079 A CENTER WITH LYMPHATIC 2644 01:32:36,079 --> 01:32:38,382 EXPERTISE SOONER. 2645 01:32:38,382 --> 01:32:43,353 IN CONTRAST, MY OWN LA. 2646 01:32:43,353 --> 01:32:45,122 SM JOURNEY BEGAN AS A SECOND 2647 01:32:45,122 --> 01:32:46,556 YEAR ANESTHESIOLOGY RESIDENT AT 2648 01:32:46,556 --> 01:32:48,525 PENN, THE VERY INSTITUTION WHERE 2649 01:32:48,525 --> 01:32:49,359 KRISTIN EVENTUALLY RECEIVED THE 2650 01:32:49,359 --> 01:32:50,293 CARE THAT SAVE HER LIFE. 2651 01:32:50,293 --> 01:32:52,362 I NOTICED A SLOSHING SENSATION 2652 01:32:52,362 --> 01:32:54,264 IN MY CHEST AT NIGHT. 2653 01:32:54,264 --> 01:32:55,265 MY PARTNER AUSCULTATED MY CHEST 2654 01:32:55,265 --> 01:32:56,767 AND NOTED ABSENT BREAST SOUNDS 2655 01:32:56,767 --> 01:32:58,402 ON THE RIGHT SIDE SO WE GOT A 2656 01:32:58,402 --> 01:33:00,404 CHEST X-RAY THE NEXT DAY WHICH 2657 01:33:00,404 --> 01:33:01,037 REVEALED COMPLETE OPACIFICATION 2658 01:33:01,037 --> 01:33:03,974 OF MY RIGHT LUNG AND A AUTHOR 2659 01:33:03,974 --> 01:33:05,409 CENTESIS DRAINED A LITER OF 2660 01:33:05,409 --> 01:33:05,942 KYLE. 2661 01:33:05,942 --> 01:33:09,413 A FOLLOW UP CHEST CT CONFIRMED 2662 01:33:09,413 --> 01:33:11,515 MULTIPLE PULMONARY CYSTIC 2663 01:33:11,515 --> 01:33:13,817 LESIONS BILATERAL RAY L I 2664 01:33:13,817 --> 01:33:15,318 FORTUNATELY HAD IMMEDIATE ACCESS 2665 01:33:15,318 --> 01:33:16,586 TO A MULTIDISCIPLINARY TEAM AT 2666 01:33:16,586 --> 01:33:19,089 PENN EXPERIENCE IN LAM'S 2667 01:33:19,089 --> 01:33:21,658 COMPLEXITIES INCLUDING 2668 01:33:21,658 --> 01:33:22,659 MANIFESTATIONS LIKE MINE SO I 2669 01:33:22,659 --> 01:33:23,860 UNDERWENT A FEW MORE AUTHOR 16 2670 01:33:23,860 --> 01:33:25,295 TEE SEES FOLLOWED BY PLACEMENT 2671 01:33:25,295 --> 01:33:27,464 OF A PLEUR AXE WHICH ALLOWED ME 2672 01:33:27,464 --> 01:33:28,698 TO MANAGE THE RECURRENT 2673 01:33:28,698 --> 01:33:29,699 EFFUSIONS WHILE CONTINUING MY 2674 01:33:29,699 --> 01:33:30,767 CLINICAL DUTIES IN THE OPERATING 2675 01:33:30,767 --> 01:33:31,234 ROOM. 2676 01:33:31,234 --> 01:33:33,203 A CHALLENGING TASK WITH A SEMI 2677 01:33:33,203 --> 01:33:37,107 PERMANENT CATHETER IN PLACE. 2678 01:33:37,107 --> 01:33:38,442 STARTING -- IS REALLY WHAT 2679 01:33:38,442 --> 01:33:41,945 STABILIZED MY SYSTEMS IN ABOUT A 2680 01:33:41,945 --> 01:33:43,914 MONTH SPARING ME FROM MORE 2681 01:33:43,914 --> 01:33:44,848 INVASIVE INTERVENTIONS. 2682 01:33:44,848 --> 01:33:47,184 I'VE COME TO UNDERSTAND THE DUAL 2683 01:33:47,184 --> 01:33:51,388 ROLE OF LYMPHATIC COMPLICATIONS 2684 01:33:51,388 --> 01:33:54,925 LIKE CHYLOUS EFFUSIONS IN LAM. 2685 01:33:54,925 --> 01:33:57,427 THEY ARE DIAGNOSTIC 2686 01:33:57,427 --> 01:33:58,028 OPPORTUNITIES. 2687 01:33:58,028 --> 01:34:00,597 WHILE IT AFFECTS ONLY ABOUT 20% 2688 01:34:00,597 --> 01:34:01,798 OF PATIENTS SERVE AS A CRITICAL 2689 01:34:01,798 --> 01:34:02,833 CLUE TO IDENTIFYING THE DISEASE 2690 01:34:02,833 --> 01:34:03,033 EARLY. 2691 01:34:03,033 --> 01:34:04,468 THIS IS ESPECIALLY IMPORTANT 2692 01:34:04,468 --> 01:34:05,735 GIVEN THE LYMPHATIC INVOLVEMENT 2693 01:34:05,735 --> 01:34:08,305 IN LAM, WHICH CAN RANGE FROM 2694 01:34:08,305 --> 01:34:12,509 CHYLOUS EFFUSIONS AND -- TO 2695 01:34:12,509 --> 01:34:13,076 ASCITES. 2696 01:34:13,076 --> 01:34:13,777 THESE STEM FROM THE 2697 01:34:13,777 --> 01:34:15,779 PROLIFERATION OF NEOPLASTIC LAM 2698 01:34:15,779 --> 01:34:17,447 CELLS THAT OBSTRUCT LYMPHATIC 2699 01:34:17,447 --> 01:34:18,448 VESSELS LEADING TO FLUID 2700 01:34:18,448 --> 01:34:19,382 ACCUMULATION. 2701 01:34:19,382 --> 01:34:21,885 ELEVATED LEVELS OF VEGFD 2702 01:34:21,885 --> 01:34:22,719 CORRELATE WITH LYMPHATIC 2703 01:34:22,719 --> 01:34:24,287 INVOLVEMENT IN LAM AND CAN AID 2704 01:34:24,287 --> 01:34:24,621 IN DIAGNOSIS. 2705 01:34:24,621 --> 01:34:26,690 FOR ME, TIMELY RECOGNITION OF MY 2706 01:34:26,690 --> 01:34:28,458 SYMPTOMS AND ACCESS TO 2707 01:34:28,458 --> 01:34:29,526 EXPERIENCED SPECIALISTS ALLOWED 2708 01:34:29,526 --> 01:34:31,928 FOR A STREAMLINED TREATMENT 2709 01:34:31,928 --> 01:34:32,896 COURSE, HOWEVER, KRISTEN'S 2710 01:34:32,896 --> 01:34:34,030 EXPERIENCE DEMONSTRATES HOW 2711 01:34:34,030 --> 01:34:36,433 DELAYS IN ACCESSING SPECIALIZED 2712 01:34:36,433 --> 01:34:38,935 CARE CAN LEAD TO PROLONGED 2713 01:34:38,935 --> 01:34:39,903 SUFFERING, INVASIVE PROCEDURES, 2714 01:34:39,903 --> 01:34:43,507 AND UNNECESSARY COMPLICATIONS. 2715 01:34:43,507 --> 01:34:45,942 IN BOTH KRISTEN'S CASE AND MINE, 2716 01:34:45,942 --> 01:34:49,913 CHYLOUS EFFUSIONS HASTENED OUR 2717 01:34:49,913 --> 01:34:53,083 DIAGNOSIS YET OUR CARE PATHS 2718 01:34:53,083 --> 01:34:54,217 DIVERGED DRASTICALLY. 2719 01:34:54,217 --> 01:34:55,719 KRISTEN ENDURED MONTHS OF 2720 01:34:55,719 --> 01:34:56,920 INVASIVE PROCEDURES AND 2721 01:34:56,920 --> 01:34:58,221 SIGNIFICANT PHYSICAL AND 2722 01:34:58,221 --> 01:34:59,189 EMOTIONAL DISTRESS BEFORE 2723 01:34:59,189 --> 01:35:00,190 ACCESSING SPECIALIZED CARE. 2724 01:35:00,190 --> 01:35:02,125 IN CONTRAST, I BENEFITED 2725 01:35:02,125 --> 01:35:03,627 IMMEDIATE ACCESS TO EXPERTS, 2726 01:35:03,627 --> 01:35:05,629 WHICH ALLOWED ME TO AVOID 2727 01:35:05,629 --> 01:35:08,198 UNNECESSARY AND ACHIEVE 2728 01:35:08,198 --> 01:35:08,732 STABILITY QUICKLY. 2729 01:35:08,732 --> 01:35:10,033 THESE CONTRASTING EXPERIENCES 2730 01:35:10,033 --> 01:35:11,468 UNDERSCORE THE PROFOUND IMPACT 2731 01:35:11,468 --> 01:35:12,602 THAT TIMELY EXPERT INTERVENTION 2732 01:35:12,602 --> 01:35:14,371 CAN HAVE ON OUTCOMES AND RARE 2733 01:35:14,371 --> 01:35:15,872 DISEASES LIKE LAM. 2734 01:35:15,872 --> 01:35:17,274 RECOGNIZING LYMPHATIC SYMPTOMS 2735 01:35:17,274 --> 01:35:18,909 AS POTENTIAL EARLY INDICATORS OF 2736 01:35:18,909 --> 01:35:19,943 LAM AND PROMPTLY REFERRING 2737 01:35:19,943 --> 01:35:20,644 PATIENTS TO CENTERS OF 2738 01:35:20,644 --> 01:35:22,379 EXCELLENCE CAN MAKE ALL THE 2739 01:35:22,379 --> 01:35:22,913 DIFFERENCE. 2740 01:35:22,913 --> 01:35:24,180 OUR STORIES HIGHLIGHT THE 2741 01:35:24,180 --> 01:35:25,348 CRITICAL NEED FOR HEALTHCARE 2742 01:35:25,348 --> 01:35:27,651 PROVIDERS TO UNDERSTAND AND 2743 01:35:27,651 --> 01:35:28,652 ADDRESS THE LYMPHATIC 2744 01:35:28,652 --> 01:35:29,819 COMPLEXITIES OF LAM. 2745 01:35:29,819 --> 01:35:31,288 FOR PATIENTS LIKE KRISTEN AND 2746 01:35:31,288 --> 01:35:33,657 ME, SPECIALIZED CARE ISN'T JUST 2747 01:35:33,657 --> 01:35:34,057 BENEFICIAL. 2748 01:35:34,057 --> 01:35:35,492 IT'S LIFE SAVING. 2749 01:35:35,492 --> 01:35:36,826 YOU'RE ON A PERSONAL NOTE, IT IS 2750 01:35:36,826 --> 01:35:38,662 MY HONOR TO INTRODUCE DRG FRANK 2751 01:35:38,662 --> 01:35:39,996 MCCORMACK, NOT ONLY AN EXPERT IN 2752 01:35:39,996 --> 01:35:41,431 LAM BUT ALSO ONE OF THE 2753 01:35:41,431 --> 01:35:42,532 PHYSICIANS WHOSE CARE AND 2754 01:35:42,532 --> 01:35:44,935 EXPERTISE HAS SAVED MY LIFE. 2755 01:35:44,935 --> 01:35:46,002 DR. MCCORMACK WILL SHARE HIS 2756 01:35:46,002 --> 01:35:47,704 INSIGHTS AND DISCUSS THE 2757 01:35:47,704 --> 01:35:48,672 ADVANCEMENTS NEEDED TO IMPROVE 2758 01:35:48,672 --> 01:35:49,873 OUTCOMES FOR PATIENTS LIKE US. 2759 01:35:49,873 --> 01:35:55,579 THANK YOU. 2760 01:35:55,579 --> 01:35:59,049 >> WELL, THANK YOU, LINDSAY, FOR 2761 01:35:59,049 --> 01:36:00,317 SHARING KRISTEN AND YOUR STORIES 2762 01:36:00,317 --> 01:36:01,384 AND YOUR VERY DIFFERENT 2763 01:36:01,384 --> 01:36:02,385 EXPERIENCES WITH LYMPHATIC 2764 01:36:02,385 --> 01:36:04,054 COMPLICATIONS OF LAM. 2765 01:36:04,054 --> 01:36:05,956 AND TO THE NCLD FOR THE 2766 01:36:05,956 --> 01:36:07,324 OPPORTUNITY TO SPEAK ABOUT 2767 01:36:07,324 --> 01:36:08,525 LYMPHATIC DISEASES THAT INVOLVE 2768 01:36:08,525 --> 01:36:10,226 THE LUNG. 2769 01:36:10,226 --> 01:36:13,229 I'M A PULMONARY PHYSICIAN AT THE 2770 01:36:13,229 --> 01:36:15,765 UNIVERSITY OF CINCINNATI, I'VE 2771 01:36:15,765 --> 01:36:17,734 SPENT A LARGE PART OF MY CAREER 2772 01:36:17,734 --> 01:36:19,903 WORKING ON TREATMENTS FOR 2773 01:36:19,903 --> 01:36:21,404 PATIENTS WITH LAM WHICH IS A 2774 01:36:21,404 --> 01:36:24,107 PROGRESSIVE CYSTIC LUNG DISEASE 2775 01:36:24,107 --> 01:36:25,575 THAT RESULTS IN CHRONIC 2776 01:36:25,575 --> 01:36:26,076 RESPIRATORY FAILURE. 2777 01:36:26,076 --> 01:36:28,478 I SERVED AS THE FOUNDING 2778 01:36:28,478 --> 01:36:29,579 SCIENTIFIC DIRECTOR OF THE LAM 2779 01:36:29,579 --> 01:36:31,314 FOUNDATION FOR 25 YEARS AND I 2780 01:36:31,314 --> 01:36:32,682 WAS PRINCIPAL INVESTIGATOR ON 2781 01:36:32,682 --> 01:36:35,585 THE CLINICAL TRIAL THAT I 2782 01:36:35,585 --> 01:36:37,787 IDENTIFIED SIROLIMUS AS A SAFE 2783 01:36:37,787 --> 01:36:39,189 AND EFFECTIVE AND NOW 2784 01:36:39,189 --> 01:36:39,956 FDA-APPROVED THERAPY FOR LAM. 2785 01:36:39,956 --> 01:36:41,691 IN THE LAST 30 YEARS THE LAM 2786 01:36:41,691 --> 01:36:43,426 FOUNDATION HAS RAISED OVER 2787 01:36:43,426 --> 01:36:44,928 $35 MILLION AND HAS DEVOTED 60% 2788 01:36:44,928 --> 01:36:46,863 OF ITS EARNINGS TO PEER REVIEWED 2789 01:36:46,863 --> 01:36:47,497 RESEARCH INCLUDING THE STUT DIS 2790 01:36:47,497 --> 01:36:49,232 THAT PROVIDED THE BASIS FOR THAT 2791 01:36:49,232 --> 01:36:49,766 PIVOTAL TRIAL. 2792 01:36:49,766 --> 01:36:51,668 DURING MY TENURE AS SCIENTIFIC 2793 01:36:51,668 --> 01:36:52,702 DIRECTOR, WE ESTABLISHED AN 2794 01:36:52,702 --> 01:36:54,137 INTERNATIONAL NETWORK OF LAM 2795 01:36:54,137 --> 01:36:55,505 FOUNDATION CLENGS THAT FOCUSES 2796 01:36:55,505 --> 01:36:57,574 REFERRALS AND POPULATION CENTERS 2797 01:36:57,574 --> 01:37:00,310 TO EXPERTS AT REGIONAL ACADEMIC 2798 01:37:00,310 --> 01:37:01,011 MEDICAL CENTERS. 2799 01:37:01,011 --> 01:37:03,113 OVER TIME, MANY PATIENTS WITH 2800 01:37:03,113 --> 01:37:04,114 LYMPHATIC LUNG DISEASE THAT 2801 01:37:04,114 --> 01:37:05,649 MIMIC LAM HAVE BEEN REFERRED TO 2802 01:37:05,649 --> 01:37:08,718 OUR LAM CLINIC NETWORK, AND LAM 2803 01:37:08,718 --> 01:37:10,453 PHYSICIANS HAVE BECOME 2804 01:37:10,453 --> 01:37:12,188 INTERESTED AND EXPERIENCED THIS 2805 01:37:12,188 --> 01:37:13,123 THOSE DISEASES AS WELL. 2806 01:37:13,123 --> 01:37:15,258 WE HAD NCATS AND NIH FUNDING FOR 2807 01:37:15,258 --> 01:37:16,926 A DECADE TO DEVELOP THE RARE 2808 01:37:16,926 --> 01:37:18,194 LUNG DISEASE CONSORTIUM TO 2809 01:37:18,194 --> 01:37:19,763 EXTEND THE SCOPE OF LAM CLINICS 2810 01:37:19,763 --> 01:37:22,065 TO INCLUDE OTHER UNCOMMON LUNG 2811 01:37:22,065 --> 01:37:24,000 DISEASES, INCLUDING LYMPHATIC 2812 01:37:24,000 --> 01:37:26,036 LUNG DISEASES, ON SLIDE 2, 2813 01:37:26,036 --> 01:37:33,243 ACTUALLY. 2814 01:37:33,243 --> 01:37:38,314 SO THIS IS THE RARE LUNG 2815 01:37:38,314 --> 01:37:39,182 DISEASE/LAM CLINIC NETWORK THAT 2816 01:37:39,182 --> 01:37:46,523 I WAS DESCRIBING. 2817 01:37:46,523 --> 01:37:49,192 IN SLIDE 3, AS WITH MANY OTHER 2818 01:37:49,192 --> 01:37:50,760 LYMPHATIC DISEASES, LAM 2819 01:37:50,760 --> 01:37:52,929 OBSTRUCTS AND DISTORTS 2820 01:37:52,929 --> 01:37:57,500 LYMPHATICS AND CAUSES CHYLOUS 2821 01:37:57,500 --> 01:37:57,834 EFFUSIONS. 2822 01:37:57,834 --> 01:38:01,671 AS A RESULT THERE ARE NOW MANY 2823 01:38:01,671 --> 01:38:04,574 PHYSICIANS IN THE LAM CLINIC 2824 01:38:04,574 --> 01:38:06,042 NETWORK, INCLUDING GENERALIZED 2825 01:38:06,042 --> 01:38:10,914 LYMPHATIC ANOMALY, CENTRAL 2826 01:38:10,914 --> 01:38:14,150 CONDUCTING LYMPHATIC ANOMALY TO 2827 01:38:14,150 --> 01:38:15,118 NAME A FEW. 2828 01:38:15,118 --> 01:38:16,352 CALLING US EXPERTS MAY BE A 2829 01:38:16,352 --> 01:38:18,054 STRETCH BUT WE'RE SCIENTIFICALLY 2830 01:38:18,054 --> 01:38:18,688 CURIOUS AND VERY WILLING TO 2831 01:38:18,688 --> 01:38:19,089 LEARN. 2832 01:38:19,089 --> 01:38:20,590 WE SHARE CASES AND LEARN 2833 01:38:20,590 --> 01:38:21,758 INTEREST EACH OTHER. 2834 01:38:21,758 --> 01:38:23,259 WE ENGAGE THE PEDIATRIC 2835 01:38:23,259 --> 01:38:23,960 LYMPHATIC DISEASE COMMUNITY 2836 01:38:23,960 --> 01:38:25,128 WHICH SEES THESE PATIENTS IN 2837 01:38:25,128 --> 01:38:26,730 MUCH GREATER NUMBERS AND IS MUCH 2838 01:38:26,730 --> 01:38:27,731 MORE ADVANCED IN TERMS OF 2839 01:38:27,731 --> 01:38:27,997 RESEARCH. 2840 01:38:27,997 --> 01:38:29,632 MANY OF US REACH OUT TO DENISE 2841 01:38:29,632 --> 01:38:34,704 ADAMS AT CHOP OR ADRIENNE HAMMIL 2842 01:38:34,704 --> 01:38:37,640 AT CINCINNATI FOR MANY OF THE 2843 01:38:37,640 --> 01:38:38,274 COMPLICATED PULMONARY LYMPHATIC 2844 01:38:38,274 --> 01:38:39,743 CASES THAT ARE REFERRED TO OUR 2845 01:38:39,743 --> 01:38:40,009 CLINICS. 2846 01:38:40,009 --> 01:38:41,845 MANY HAVE BEEN FOUND TO BE 2847 01:38:41,845 --> 01:38:44,914 CAUSED BY SINGLE GENE MUTATIONS 2848 01:38:44,914 --> 01:38:46,716 AND IN FACT TARGETED THERAPIES 2849 01:38:46,716 --> 01:38:47,817 HAVE BECOME AVAILABLE, MAKING 2850 01:38:47,817 --> 01:38:49,152 IDENTIFICATION AND CORRECT 2851 01:38:49,152 --> 01:38:49,686 DIAGNOSIS IMPERATIVE. 2852 01:38:49,686 --> 01:38:52,288 THE STARKLY DIFFERING OUTCOMES 2853 01:38:52,288 --> 01:38:54,991 FOR LINDSAY AND KRISTEN PROVIDE 2854 01:38:54,991 --> 01:38:56,926 A PERFECT ILLUSTRATION OF THE 2855 01:38:56,926 --> 01:38:58,027 IMPORTANCE OF EARLY 2856 01:38:58,027 --> 01:39:01,531 IDENTIFICATION AND TREATMENT FOR 2857 01:39:01,531 --> 01:39:02,565 LYMPHATIC LUNG DISEASE. 2858 01:39:02,565 --> 01:39:03,867 LINDSAY RECEIVED HER DIAGNOSIS 2859 01:39:03,867 --> 01:39:06,503 OF LAM EARLY AND RECEIVED 2860 01:39:06,503 --> 01:39:08,671 SIROLIMUS WHICH COMPLETELY 2861 01:39:08,671 --> 01:39:11,174 ELIMINATED THE FLUID COLLECTION 2862 01:39:11,174 --> 01:39:13,543 IN HER CHEST CAVITY OVER A FEW 2863 01:39:13,543 --> 01:39:15,879 MONTHS WITHOUT INVASIVE 2864 01:39:15,879 --> 01:39:17,213 INTERVENTIONS. 2865 01:39:17,213 --> 01:39:18,281 KRISTEN ON THE OTHER HAND 2866 01:39:18,281 --> 01:39:19,315 RECEIVED A DELAYED DIAGNOSIS OF 2867 01:39:19,315 --> 01:39:21,584 LAM AND UNDERWENT UNNECESSARY 2868 01:39:21,584 --> 01:39:22,952 AND ILL ADVISED SURGICAL 2869 01:39:22,952 --> 01:39:24,154 PROCEDURES THAT LED TO 2870 01:39:24,154 --> 01:39:25,789 INTRACTABLE CHYLOUS EFFUSIONS, 2871 01:39:25,789 --> 01:39:27,757 RESULTING IN THE NEED FOR 2872 01:39:27,757 --> 01:39:29,225 FREQUENT DRAINAGE, MULTIPLE 2873 01:39:29,225 --> 01:39:30,426 ADDITIONAL INTERVENTIONS, 2874 01:39:30,426 --> 01:39:31,294 NUTRITIONAL DEFICIENCY AND 2875 01:39:31,294 --> 01:39:31,661 WEIGHT LOSS. 2876 01:39:31,661 --> 01:39:33,429 HOW COULD THE FAILURE OF 2877 01:39:33,429 --> 01:39:34,864 KRISTEN'S DOCTORS TO CORRECTLY 2878 01:39:34,864 --> 01:39:38,334 DIAGNOSE HER OR REFER HER TO A 2879 01:39:38,334 --> 01:39:40,003 SPECIALIZED CENTER OVERCOME IN 2880 01:39:40,003 --> 01:39:40,837 THE LONG TERM? 2881 01:39:40,837 --> 01:39:42,438 THERE ARE MORE THAN 7,000 RARE 2882 01:39:42,438 --> 01:39:44,440 DISORDERS AND AT LEAST 10 TO 15% 2883 01:39:44,440 --> 01:39:46,509 OF THOSE INVOLVE THE LUNG. 2884 01:39:46,509 --> 01:39:48,812 IT'S UNREALISTIC TO THINK THAT 2885 01:39:48,812 --> 01:39:49,612 MEDICAL SCHOOL CURRICULA COULD 2886 01:39:49,612 --> 01:39:52,282 EVER INCLUDE ALL OF THEM OR EVEN 2887 01:39:52,282 --> 01:39:53,917 PULMONARY PHYSICIANS CAN BE WELL 2888 01:39:53,917 --> 01:39:54,651 INFORMED ABOUT MORE THAN A FRACK 2889 01:39:54,651 --> 01:39:55,451 SLUN OF THEM. 2890 01:39:55,451 --> 01:39:57,320 PERHAPS INSTILLING THE HUMILITY 2891 01:39:57,320 --> 01:40:00,590 TO REFER AND TO TRAINING A 2892 01:40:00,590 --> 01:40:02,358 FUTURE OF PHYSICIANS WOULD BE A 2893 01:40:02,358 --> 01:40:03,960 MUCH BETTER STRATEGY IN MUCH THE 2894 01:40:03,960 --> 01:40:07,497 SAME WAY AS HUMANISM, ETHICS AND 2895 01:40:07,497 --> 01:40:08,731 PROFESSIONALISM HAVE BECOME AN 2896 01:40:08,731 --> 01:40:09,966 INTEGRAL PART OF MEDICAL SCHOOL. 2897 01:40:09,966 --> 01:40:10,900 WHEN PATIENTS ARE CONFRONTED 2898 01:40:10,900 --> 01:40:14,037 WITH A RARE DISORDER THAT IS NOT 2899 01:40:14,037 --> 01:40:16,439 GETTING DUE ATTENTION FROM THEIR 2900 01:40:16,439 --> 01:40:17,774 CAREGIVERS, THEY OFTEN BECOME 2901 01:40:17,774 --> 01:40:19,142 THEIR OWN BEST ADVOCATES AS 2902 01:40:19,142 --> 01:40:20,643 WE'VE HEARD ON THIS CALL, 2903 01:40:20,643 --> 01:40:22,111 INCREASINGLY THEY'RE TURNING TO 2904 01:40:22,111 --> 01:40:24,914 ONLINE RESOURCES LIKE WIKIPEDIA, 2905 01:40:24,914 --> 01:40:26,683 MEDSCAPE AND WEBMD, AND WE IN 2906 01:40:26,683 --> 01:40:27,784 THE MEDICAL COMMUNITY MUST 2907 01:40:27,784 --> 01:40:30,854 REMAIN ENGAGED TO MAKE SURE 2908 01:40:30,854 --> 01:40:32,488 ACCURATE INTERVENTION IS 2909 01:40:32,488 --> 01:40:33,122 PROVIDED. 2910 01:40:33,122 --> 01:40:34,991 THE RARE LUNG DISEASE LAM CLINIC 2911 01:40:34,991 --> 01:40:36,626 NETWORK. 2912 01:40:36,626 --> 01:40:38,561 WE SPEND CONSIDERABLE TIME 2913 01:40:38,561 --> 01:40:39,896 EDITING WIKIPEDIA, PROVIDING 2914 01:40:39,896 --> 01:40:50,874 EVIDENCE HAD BEEN BASED BASE - S 2915 01:40:51,841 --> 01:40:53,309 CHATGPT OR VERSIONS ADAPTED TO 2916 01:40:53,309 --> 01:40:54,944 MEDICAL QUESTIONS EVEN TODAY 2917 01:40:54,944 --> 01:40:57,447 WHEN THE CHATGPT IS ASKED WHAT 2918 01:40:57,447 --> 01:40:58,715 IS THE DIAGNOSIS FOR A 2919 01:40:58,715 --> 01:41:03,453 30-YEAR-OLD WOMAN WITH CHYLOUS 2920 01:41:03,453 --> 01:41:06,189 EFFUSION, DILATED ABDOMINAL 2921 01:41:06,189 --> 01:41:06,489 LYMPHATICS, 2922 01:41:06,489 --> 01:41:07,123 LYMPHANGIOLEIOMYOMATOSIS IS THE 2923 01:41:07,123 --> 01:41:09,192 FIRST DIAGNOSIS TO APPEAR. 2924 01:41:09,192 --> 01:41:11,694 AS AI CONTINUES TO MATURE AND 2925 01:41:11,694 --> 01:41:13,329 EVOLVE AND ACCESS TO INFORMATION 2926 01:41:13,329 --> 01:41:14,564 IMPROVES PERHAPS PATIENTS WITH 2927 01:41:14,564 --> 01:41:15,899 LYMPHATIC DISEASE CAN BE SPARED 2928 01:41:15,899 --> 01:41:17,033 THE KIND OF SUFFERING THAT 2929 01:41:17,033 --> 01:41:18,167 KRISTEN AND OTHERS ON THIS CALL 2930 01:41:18,167 --> 01:41:18,868 HAVE ENDURED. 2931 01:41:18,868 --> 01:41:21,070 SO MY SIMPLE MESSAGE ON THE NEXT 2932 01:41:21,070 --> 01:41:22,939 SLIDE IS THAT THE RARE LUNG 2933 01:41:22,939 --> 01:41:24,173 DISEASE LAM CLINIC NETWORK CAN 2934 01:41:24,173 --> 01:41:25,842 BE A RESOURCE FOR PATIENTS WITH 2935 01:41:25,842 --> 01:41:26,943 LYMPHATIC DISORDERS THAT 2936 01:41:26,943 --> 01:41:27,944 INVOLVES THE LUNGS. 2937 01:41:27,944 --> 01:41:29,646 LYMPHATIC BIOLOGY REPRESENTS AN 2938 01:41:29,646 --> 01:41:30,847 EMERGING FRONTIER IN MEDICINE 2939 01:41:30,847 --> 01:41:32,582 THAT'S POISED FOR GREAT ADVANCES 2940 01:41:32,582 --> 01:41:33,683 AND INTEREST IN LYMPHATIC 2941 01:41:33,683 --> 01:41:34,684 DISORDERS IS GOING TO FOLLOW 2942 01:41:34,684 --> 01:41:35,184 PROGRESS. 2943 01:41:35,184 --> 01:41:37,453 I HAVE THREE WISHES. 2944 01:41:37,453 --> 01:41:39,422 WE NEED CENTERS OF EXCELLENCE 2945 01:41:39,422 --> 01:41:39,956 FOR ADULTS WITH LYMPHATIC 2946 01:41:39,956 --> 01:41:40,189 DISEASE. 2947 01:41:40,189 --> 01:41:41,758 WE HAVE TWO OR THREE SUCH 2948 01:41:41,758 --> 01:41:42,859 CENTERS FOR PEDIATRIC DISEASE 2949 01:41:42,859 --> 01:41:46,562 THAT FOCUS ON A ARTERIAL, VENOUS 2950 01:41:46,562 --> 01:41:48,398 AND VASCULAR ANOMALIES IN 2951 01:41:48,398 --> 01:41:49,032 BOSTON, PHILADELPHIA AND 2952 01:41:49,032 --> 01:41:50,266 CINCINNATI, BUT NO ADULT 2953 01:41:50,266 --> 01:41:50,800 CENTERS. 2954 01:41:50,800 --> 01:41:52,235 INVESTING IN EXTENDING THE SCOPE 2955 01:41:52,235 --> 01:41:53,703 OF THOSE CENTERS TO INCLUDE 2956 01:41:53,703 --> 01:41:55,939 ADULTS WOULD BE AN EXCELLENT 2957 01:41:55,939 --> 01:41:57,073 INITIAL STRATEGY, BUT ULTIMATELY 2958 01:41:57,073 --> 01:42:00,376 THE GOAL HAS TO BE TO DISTRIBUTE 2959 01:42:00,376 --> 01:42:02,111 EXPERTISE AND THE RARE LUNG 2960 01:42:02,111 --> 01:42:03,179 DISEASE NETWORK IS AVAILABLE AS 2961 01:42:03,179 --> 01:42:04,614 A PLATFORM FOR THAT PURPOSE. 2962 01:42:04,614 --> 01:42:06,316 WE NEED TO DISTRIBUTE EXPERTISE 2963 01:42:06,316 --> 01:42:08,017 IN LYMPHATIC IMAGING ACROSS THE 2964 01:42:08,017 --> 01:42:09,152 UNITED STATES. 2965 01:42:09,152 --> 01:42:10,553 THE UNIVERSITY OF PENNSYLVANIA 2966 01:42:10,553 --> 01:42:11,955 HAS LED THE WAY BUT ACCESSORY 2967 01:42:11,955 --> 01:42:13,957 MAINS AN ISSUE, AND WE NEED MORE 2968 01:42:13,957 --> 01:42:15,692 CENTERS TO OFFER LYMPHATIC 2969 01:42:15,692 --> 01:42:16,259 MAPPING AND INTERVENTION 2970 01:42:16,259 --> 01:42:19,162 SERVICES, INCLUDING DYNAMIC 2971 01:42:19,162 --> 01:42:23,399 CONTRAST ENHANCED PLEE, 2972 01:42:23,399 --> 01:42:27,704 INTRANODELL -- AND CATHETER 2973 01:42:27,704 --> 01:42:31,040 BASED THORACIC DUCT 2974 01:42:31,040 --> 01:42:31,474 EMBOLIZATION. 2975 01:42:31,474 --> 01:42:33,109 FINALLY WE NEED SUPPORT FOR 2976 01:42:33,109 --> 01:42:34,377 RESEARCH INTO THE MOLECULAR AND 2977 01:42:34,377 --> 01:42:35,945 GENETIC BASIS FOR THE DIAGNOSIS, 2978 01:42:35,945 --> 01:42:36,879 MANAGEMENT AND TREATMENT OF 2979 01:42:36,879 --> 01:42:38,348 LYMPHATIC DISORDERS IN ADULTS 2980 01:42:38,348 --> 01:42:38,848 AND CHILDREN. 2981 01:42:38,848 --> 01:42:41,217 WE HAVE SEVERAL CLINICAL USEFUL 2982 01:42:41,217 --> 01:42:42,752 BIOMARKERS FOR THE DIAGNOSIS OF 2983 01:42:42,752 --> 01:42:45,254 LYMPHATIC LUNG DISEASE INCLUDING 2984 01:42:45,254 --> 01:42:50,426 VEGFD FOR LAMB AND -- OFFERED BY 2985 01:42:50,426 --> 01:42:51,661 BOUTIQUE LABS AND REMAIN 2986 01:42:51,661 --> 01:42:53,429 DIFFICULT TO ACCESS. 2987 01:42:53,429 --> 01:42:55,031 ASSISTANCE WITH MAKING THESE 2988 01:42:55,031 --> 01:42:56,265 BIOMARKERS MORE WIDELY AVAILABLE 2989 01:42:56,265 --> 01:42:59,869 COULD BE LOW HANGING FRUIT FOR 2990 01:42:59,869 --> 01:43:00,636 THE NCLD GROUP. 2991 01:43:00,636 --> 01:43:01,437 THANK YOU VERY MUCH FOR YOUR 2992 01:43:01,437 --> 01:43:02,839 ATTENTION AND FOR GIVING ME AN 2993 01:43:02,839 --> 01:43:05,108 OPPORTUNITY TO SPEAK TODAY. 2994 01:43:05,108 --> 01:43:05,908 >> THANK YOU. 2995 01:43:05,908 --> 01:43:08,144 THANK YOU BOTH, AND WE WILL MOVE 2996 01:43:08,144 --> 01:43:11,481 ON TO THE NEXT SPEAKER. 2997 01:43:11,481 --> 01:43:14,617 IT IS GOING TO BE DR. LEO 2998 01:43:14,617 --> 01:43:15,251 SCHULTZE-KOOLAND. 2999 01:43:15,251 --> 01:43:16,719 HE'S THE PRESIDENT OF 3000 01:43:16,719 --> 01:43:17,420 INTERNATIONAL SOCIETY FOR THE 3001 01:43:17,420 --> 01:43:20,723 STUDY OF VASCULAR ANOMALIES. 3002 01:43:20,723 --> 01:43:21,357 ISSVA. 3003 01:43:21,357 --> 01:43:22,158 LEO? 3004 01:43:22,158 --> 01:43:24,260 >> THANK YOU VERY MUCH FOR THE 3005 01:43:24,260 --> 01:43:24,627 INTRODUCTION. 3006 01:43:24,627 --> 01:43:26,429 IT'S A REAL PLEASURE BEING PART 3007 01:43:26,429 --> 01:43:29,065 OF THIS FORUM. 3008 01:43:29,065 --> 01:43:32,035 I'M REPRESENTING BASICALLY 3009 01:43:32,035 --> 01:43:34,370 ISSVAS BUT ALSO VASCA, THE 3010 01:43:34,370 --> 01:43:36,072 REFERENCE NETWORK FOR VEAS 3011 01:43:36,072 --> 01:43:45,715 COLVASCULARDISEASES. 3012 01:43:45,715 --> 01:43:48,251 YOU ALL KNOW ISSVA, THE 3013 01:43:48,251 --> 01:43:48,851 INTERNATIONAL SOCIETY FOR THE 3014 01:43:48,851 --> 01:43:51,454 STUDY OF VASCULAR ANOMALIES IS A 3015 01:43:51,454 --> 01:43:52,622 WORLDWIDE MULTIDISCIPLINARY 3016 01:43:52,622 --> 01:43:52,955 ORGANIZATION. 3017 01:43:52,955 --> 01:43:53,689 AT THE MOMENT IT'S GOING THROUGH 3018 01:43:53,689 --> 01:43:56,959 A PHASE OF FAST GROWTH. 3019 01:43:56,959 --> 01:44:01,364 WHICH IS REALLY ENCOURAGING, 3020 01:44:01,364 --> 01:44:02,765 ALSO WITH THE PROBLEM OF HOW TO 3021 01:44:02,765 --> 01:44:05,435 MAINTAIN THE SPECIAL ATMOSPHERE 3022 01:44:05,435 --> 01:44:07,503 WITHIN ISSVA, WHERE EXCHANGE OF 3023 01:44:07,503 --> 01:44:10,640 KNOWLEDGE AND MERNL CONTACTS ARE 3024 01:44:10,640 --> 01:44:11,774 REALLY ESSENTIAL FOR FURTHER 3025 01:44:11,774 --> 01:44:12,942 COLLABORATION BETWEEN THE LARGE 3026 01:44:12,942 --> 01:44:16,446 CENTERS IN EUROPE AND THE UNITED 3027 01:44:16,446 --> 01:44:17,213 STATES. 3028 01:44:17,213 --> 01:44:19,649 AT THE MOMENT WE'RE IMPLEMENTING 3029 01:44:19,649 --> 01:44:23,519 A NEW STRUCTURE BECAUSE WE HAVE 3030 01:44:23,519 --> 01:44:24,187 THE FEELING THAT PATIENT 3031 01:44:24,187 --> 01:44:24,954 ORGANIZATIONS SHOULD ALSO BE 3032 01:44:24,954 --> 01:44:26,522 PART OF ISSVA, AND WE ARE 3033 01:44:26,522 --> 01:44:28,491 FOCUSING ON EDUCATION, SUPPORT, 3034 01:44:28,491 --> 01:44:32,128 SUPPORT OF NEW CENTERS, SETTING 3035 01:44:32,128 --> 01:44:34,997 UP MORE SAI MAJJI AC 3036 01:44:35,965 --> 01:44:37,366 SETTING UP MORE SOCIAL MEDIA 3037 01:44:37,366 --> 01:44:42,004 ACCOUNTS AND SO FORTH. 3038 01:44:42,004 --> 01:44:44,173 NOW ON THE EUROPEAN SIDE, THE 3039 01:44:44,173 --> 01:44:45,341 EUROPEAN COMMITTEE REALIZED A 3040 01:44:45,341 --> 01:44:48,511 LONG TIME AGO THAT THERE ARE 3041 01:44:48,511 --> 01:44:50,713 ABOUT 6,000 RARE DISEASES 3042 01:44:50,713 --> 01:44:53,516 AFFECTING AT LEAST ABOUT 3043 01:44:53,516 --> 01:44:55,184 30 MILLION EUROPEANS. 3044 01:44:55,184 --> 01:44:56,252 AND IT'S VERY DIFFICULT FOR THEM 3045 01:44:56,252 --> 01:45:02,959 TO HAVE ACCESS TO THE EXPERTISE. 3046 01:45:02,959 --> 01:45:03,893 THERE'S ALSO FRAGMENTED 3047 01:45:03,893 --> 01:45:04,994 KNOWLEDGE OF RARE DISEASES AND 3048 01:45:04,994 --> 01:45:07,730 THE SMALL NUMBERS BASICALLY OF 3049 01:45:07,730 --> 01:45:09,398 PATIENT MEANS THAT RESEARCH IS 3050 01:45:09,398 --> 01:45:13,269 QUITE DIFFICULT TO PERFORM. 3051 01:45:13,269 --> 01:45:14,904 SO THAT'S BASICALLY WHY WE'VE 3052 01:45:14,904 --> 01:45:18,040 SET UP THE ERN NETWORKS. 3053 01:45:18,040 --> 01:45:21,444 NUMBER 23 ON THE LIST, VASCERN 3054 01:45:21,444 --> 01:45:25,148 IS THE NETWORK BASICALLY SET UP 3055 01:45:25,148 --> 01:45:27,984 TO -- OWE FECIALLY FOCUSED ON 3056 01:45:27,984 --> 01:45:31,187 VASCULAR ANOMALIES. 3057 01:45:31,187 --> 01:45:34,924 WE HAVE 24 AND I'M JUST GOING TO 3058 01:45:34,924 --> 01:45:36,859 FOCUS ON VASCERN. 3059 01:45:36,859 --> 01:45:39,295 WHAT THE EU DID IN 2017, THIS 3060 01:45:39,295 --> 01:45:42,565 WAS ALL STARTED, THEY ASKED THE 3061 01:45:42,565 --> 01:45:43,933 MEMBER STATES OR THE COUNTRIES 3062 01:45:43,933 --> 01:45:45,701 TO DECIDE WHICH WERE THEIR 3063 01:45:45,701 --> 01:45:46,736 EXPERTISE CENTERS WITHIN THAT 3064 01:45:46,736 --> 01:45:47,270 COUNTRY. 3065 01:45:47,270 --> 01:45:49,906 SO TO COME UP WITH CRITERIA AND 3066 01:45:49,906 --> 01:45:51,107 BASICALLY A CERTAIN NUMBER OF 3067 01:45:51,107 --> 01:45:52,308 EXPERTISE CENTERS IN EACH 3068 01:45:52,308 --> 01:45:53,876 COUNTRY WERE SELECTED AND THOSE 3069 01:45:53,876 --> 01:45:55,578 CENTERS WERE PUT TOGETHER IN A 3070 01:45:55,578 --> 01:45:57,613 NETWORK AND WE HAVE SPECIFIC 3071 01:45:57,613 --> 01:45:59,282 CRITERIA FOR THE NETWORK ITSELF, 3072 01:45:59,282 --> 01:46:00,249 TO FORM A NETWORK. 3073 01:46:00,249 --> 01:46:08,291 NOW FOR EACH NETWORK, FOR EACH 3074 01:46:08,291 --> 01:46:11,127 NETWORK, THE EU MADE GRANTS 3075 01:46:11,127 --> 01:46:12,728 AVAILABLE, AND EACH NETWORKS ARE 3076 01:46:12,728 --> 01:46:14,597 GETTING ABOUT A MILLION DOLLARS 3077 01:46:14,597 --> 01:46:18,634 PER YEAR JUST TO MAINTAIN THE 3078 01:46:18,634 --> 01:46:19,936 NETWORK. 3079 01:46:19,936 --> 01:46:23,306 THIS IS AN EXAMPLE OF THE VAST 3080 01:46:23,306 --> 01:46:24,740 VASCULAR NETWORK. 3081 01:46:24,740 --> 01:46:29,345 THIS PHOTO IS ONE MEEFTINGS WE E 3082 01:46:29,345 --> 01:46:30,213 MEETINGS WE HAD IN THE PAST 3083 01:46:30,213 --> 01:46:30,446 YEAR. 3084 01:46:30,446 --> 01:46:32,114 SO THIS IS BASICALLY CONNECTING 3085 01:46:32,114 --> 01:46:36,752 THE EXPERTISE CENTERS IN THIS 3086 01:46:36,752 --> 01:46:37,353 COUNTRY. 3087 01:46:37,353 --> 01:46:39,255 WE DO NOT MEET THE CRITERIA THE 3088 01:46:39,255 --> 01:46:40,523 EUROPEAN NETWORKS ITSELF BUT DO 3089 01:46:40,523 --> 01:46:42,358 HAVE SUFFICIENT EXPERTISE JUST 3090 01:46:42,358 --> 01:46:44,460 TO TREAT PATIENTS WITH VASCULAR 3091 01:46:44,460 --> 01:46:46,729 ANOMALIES. 3092 01:46:46,729 --> 01:46:50,766 WHAT WE BASICALLY DID WITHIN 3093 01:46:50,766 --> 01:46:54,103 VASCERN, WE HAVE MULTIPLE TASK 3094 01:46:54,103 --> 01:46:55,705 FORCES AND YOU SEE THE LIST ON 3095 01:46:55,705 --> 01:46:56,372 THE RIGHT SIDE WITH ALL THE 3096 01:46:56,372 --> 01:46:59,842 DIFFERENT TASK FORCES, AND EVERY 3097 01:46:59,842 --> 01:47:01,877 EXPERTISE CENTER HAS MULTIPLE 3098 01:47:01,877 --> 01:47:03,012 SPECIALTIES WITHIN THE CENTER 3099 01:47:03,012 --> 01:47:04,213 ITSELF. 3100 01:47:04,213 --> 01:47:06,382 THOSE SPECIALTIES WERE PLACED IN 3101 01:47:06,382 --> 01:47:11,087 THE DIFFERENT TASK FORCES. 3102 01:47:11,087 --> 01:47:19,462 TO GO TO MY WISH LIST, WE'RE 3103 01:47:19,462 --> 01:47:21,464 NOTE ONLY GETTING MONEY JUST TO 3104 01:47:21,464 --> 01:47:24,066 MAINTAIN THE NETWORK BUT THE EU 3105 01:47:24,066 --> 01:47:26,435 ALSO PUT THE EUROPEAN REFERENCE 3106 01:47:26,435 --> 01:47:27,637 NETWORK CENTRAL IN THE WHOLE 3107 01:47:27,637 --> 01:47:30,039 GRANT APPLICATION SCHEME THEY 3108 01:47:30,039 --> 01:47:31,440 BASICALLY HAVE 40 EU, BASICALLY 3109 01:47:31,440 --> 01:47:33,075 MEANS THAT FIVE YEARS AGO, THE 3110 01:47:33,075 --> 01:47:34,477 EUROPEAN JOINT PROGRAM FOR RARE 3111 01:47:34,477 --> 01:47:38,114 DISEASES WAS INITIATED WHICH WAS 3112 01:47:38,114 --> 01:47:40,016 FUNDED FOR ABOUT $300 MILLION 3113 01:47:40,016 --> 01:47:42,652 AND WE BASICALLY HAVE ACCESS TO 3114 01:47:42,652 --> 01:47:43,552 THOSE FUNDS. 3115 01:47:43,552 --> 01:47:44,854 IT DOESN'T MEAN WE ALL GET THAT 3116 01:47:44,854 --> 01:47:46,255 MONEY BUT WE CAN APPLY FOR A 3117 01:47:46,255 --> 01:47:51,160 CHANGE OF PERSONNEL, SETTING UP 3118 01:47:51,160 --> 01:47:52,295 COLLABORATIVE RESEARCH, SETTING 3119 01:47:52,295 --> 01:47:56,399 UP REGISTRIES AND SO ON. 3120 01:47:56,399 --> 01:47:59,535 NOW WHAT WOULD BE MY WISH LIST, 3121 01:47:59,535 --> 01:48:01,771 WHAT'S HAPPENING IN ISSVA, IN 3122 01:48:01,771 --> 01:48:06,175 EUROPE, IN VASCERN, NUMBER ONE, 3123 01:48:06,175 --> 01:48:08,978 IF YOU GO BACK TO THE PROMs, 3124 01:48:08,978 --> 01:48:10,179 ABOUT THREE YEARS AGO, HIGHLY 3125 01:48:10,179 --> 01:48:15,151 SUPPORTED BY ISSVA, WORLDWIDE 3126 01:48:15,151 --> 01:48:16,218 DELPHI WAS PERFORMED JUST TO 3127 01:48:16,218 --> 01:48:20,289 DEFINE THE PROBLEMS -- FOR 3128 01:48:20,289 --> 01:48:21,624 VASCULAR ANOMALIES, AND IT WAS A 3129 01:48:21,624 --> 01:48:23,859 HUGE TASK, MOST OF THE EXPERT 3130 01:48:23,859 --> 01:48:24,894 CENTERS WORLDWIDE, NOT ONLY 3131 01:48:24,894 --> 01:48:25,995 EUROPE AND AMERICA WERE 3132 01:48:25,995 --> 01:48:27,396 INVOLVED, BUT ALSO THE PATIENT 3133 01:48:27,396 --> 01:48:28,831 ORGANIZATIONS, AND THE PROMs 3134 01:48:28,831 --> 01:48:29,598 WERE DEFINED. 3135 01:48:29,598 --> 01:48:31,467 THEY ARE NOW AVAILABLE AND WHAT 3136 01:48:31,467 --> 01:48:33,769 DO I SEE HAPPENING AND I'M NOT 3137 01:48:33,769 --> 01:48:35,204 SURE HOW WE'RE GOING TO SOLVE 3138 01:48:35,204 --> 01:48:36,605 THAT ONE, IS THAT THE MOMENT THE 3139 01:48:36,605 --> 01:48:39,208 INDUSTRY IS STARTING A STUDY, 3140 01:48:39,208 --> 01:48:41,210 THEY ARE STILL FOCUSING ON 3141 01:48:41,210 --> 01:48:42,244 PARAMETERS OR OUT COME 3142 01:48:42,244 --> 01:48:43,913 PARAMETERS THEY KNOW WHAT THEY 3143 01:48:43,913 --> 01:48:45,181 BASICALLY USE FOR ONCOLOGY. 3144 01:48:45,181 --> 01:48:47,683 SO LOOKING AT FOR INSTANCE THE 3145 01:48:47,683 --> 01:48:49,485 SIZE OF A VASCULAR MALFORMATION 3146 01:48:49,485 --> 01:48:52,888 AND NOT THE QUALITY OF LIFE. 3147 01:48:52,888 --> 01:48:54,757 SO SOMEHOW IN THE GRANT 3148 01:48:54,757 --> 01:48:55,458 APPLICATION ITSELF, FOR THE 3149 01:48:55,458 --> 01:48:57,827 INDUSTRY OR FOR THE DIFFERENT 3150 01:48:57,827 --> 01:48:59,895 INSTITUTIONS, PROMs SHOULD BE 3151 01:48:59,895 --> 01:49:01,464 A IMPORTANT PART, AND THEY 3152 01:49:01,464 --> 01:49:02,965 SHOULD BE OBLIGED TO USE THE 3153 01:49:02,965 --> 01:49:04,367 PROMs. 3154 01:49:04,367 --> 01:49:06,202 THE FAIR REGISTRIES, THAT'S 3155 01:49:06,202 --> 01:49:08,070 SOMETHING I REALLY COULD TALK 3156 01:49:08,070 --> 01:49:10,840 ABOUT FOR A LONG PERIOD OF TIME, 3157 01:49:10,840 --> 01:49:13,442 BUT FAIR BASICALLY MEANS 3158 01:49:13,442 --> 01:49:14,477 REGISTRIES ARE ACCESSIBLE BY 3159 01:49:14,477 --> 01:49:17,513 COMPUTERS FROM THE OUTSIDE. 3160 01:49:17,513 --> 01:49:21,917 IT'S A HUGE UNDERTAKING FOR 3161 01:49:21,917 --> 01:49:23,419 EUROPE ITSELF, THERE'S A LOT OF 3162 01:49:23,419 --> 01:49:25,888 FOCUS ON THAT ONE, A LOT OF 3163 01:49:25,888 --> 01:49:27,556 MONEY JUST TO SET THIS UP, IT'S 3164 01:49:27,556 --> 01:49:28,591 ALSO HAPPENING IN THE UNITED 3165 01:49:28,591 --> 01:49:29,425 STATES AT THE MOMENT. 3166 01:49:29,425 --> 01:49:30,760 WHAT I DO SEE, AND THAT'S A REAL 3167 01:49:30,760 --> 01:49:33,763 CONCERN FOR ME, IS THAT THE SAME 3168 01:49:33,763 --> 01:49:34,997 THING WHAT HAPPENED ABOUT 10 3169 01:49:34,997 --> 01:49:37,333 YEARS AGO WITH THE START OF THE 3170 01:49:37,333 --> 01:49:41,203 DICOM STANDARD, IS THAT THERE IS 3171 01:49:41,203 --> 01:49:43,339 NO UNIFORMITY IN DESIGN. 3172 01:49:43,339 --> 01:49:45,274 SO EVERYBODY IS BASICALLY 3173 01:49:45,274 --> 01:49:46,809 DEVELOPING THEIR OWN STANDARDS, 3174 01:49:46,809 --> 01:49:49,912 AND I THINK THERE SHOULD BE 3175 01:49:49,912 --> 01:49:51,180 UNIFORMITY IN DESIGN. 3176 01:49:51,180 --> 01:49:54,116 BECAUSE AGAIN, THE FAIR DATA 3177 01:49:54,116 --> 01:49:55,284 POINTS ARE THE ACCESS POINTS TO 3178 01:49:55,284 --> 01:49:56,819 THE SEPARATE DATABASES, AND 3179 01:49:56,819 --> 01:49:59,054 THERE ARE A HUGE AMOUNT OF DATA 3180 01:49:59,054 --> 01:50:00,656 AVAILABLE, NOT ONLY IN BIOLOGY, 3181 01:50:00,656 --> 01:50:04,026 IN MEDICINE, IN PHARMACOLOGY, 3182 01:50:04,026 --> 01:50:07,530 AND BASICALLY WE NEED TO OPEN 3183 01:50:07,530 --> 01:50:08,030 ALL THOSE INFORMATION. 3184 01:50:08,030 --> 01:50:09,632 AND THE FAIR DATA POINTS ARE THE 3185 01:50:09,632 --> 01:50:11,000 FIRST STEP FOR THE FAIR 3186 01:50:11,000 --> 01:50:16,539 REGISTRIES TO MAKE IT VIBL. 3187 01:50:16,539 --> 01:50:17,139 IT 3188 01:50:17,139 --> 01:50:17,440 ACCESSIBLE. 3189 01:50:17,440 --> 01:50:20,142 LATER ON WE CAN TALK ABOUT 3190 01:50:20,142 --> 01:50:21,777 ONTOLOGIES OR HOW TO DO SEMANTIC 3191 01:50:21,777 --> 01:50:22,645 MODELING BUT THAT'S THE NEXT 3192 01:50:22,645 --> 01:50:22,912 STEP. 3193 01:50:22,912 --> 01:50:24,346 AND THEN THE THIRD THING WHICH 3194 01:50:24,346 --> 01:50:26,482 IS REALLY IMPORTANT IN MY IDEA 3195 01:50:26,482 --> 01:50:27,483 IS THAT EXPERT CENTERS NEED TO 3196 01:50:27,483 --> 01:50:29,685 BE RECOGNIZED BUT ALSO NEED TO 3197 01:50:29,685 --> 01:50:33,355 BE EVALUATED. 3198 01:50:33,355 --> 01:50:35,090 SO THERE NEEDS TO BE 3199 01:50:35,090 --> 01:50:35,925 MULTIDISCIPLINARY, WE NEED TO 3200 01:50:35,925 --> 01:50:36,759 LOOK AT THE SUSTAINABILITY OF 3201 01:50:36,759 --> 01:50:37,426 THOSE CENTERS. 3202 01:50:37,426 --> 01:50:39,228 IT SHOULD NOT BE DEPENDENT ON 3203 01:50:39,228 --> 01:50:40,863 JUST ONE PERSON, AND IT NEEDS TO 3204 01:50:40,863 --> 01:50:42,465 BE HIGHLY SUPPORTED BY THEIR OWN 3205 01:50:42,465 --> 01:50:42,798 UNIVERSITY. 3206 01:50:42,798 --> 01:50:45,668 SO THIS IS BASICALLY MY WISH 3207 01:50:45,668 --> 01:50:46,001 LIST. 3208 01:50:46,001 --> 01:50:48,103 I HOPE I GAVE SOME INSIGHT IN 3209 01:50:48,103 --> 01:50:50,739 HOW WE BASICALLY ARE ORGANIZING 3210 01:50:50,739 --> 01:50:51,707 THINGS IN THE UNITED STATES -- 3211 01:50:51,707 --> 01:50:52,341 IN EUROPE. 3212 01:50:52,341 --> 01:50:52,541 SORRY. 3213 01:50:52,541 --> 01:50:53,075 THANK YOU. 3214 01:50:53,075 --> 01:50:56,745 >> THANK YOU VERY MUCH, LEO. 3215 01:50:56,745 --> 01:50:58,547 WE WILL MOVE ON TO THE NEXT 3216 01:50:58,547 --> 01:51:01,150 SPEAKER, BETH STRONACH. 3217 01:51:01,150 --> 01:51:04,987 DR. BETH STRONACH IS THE 3218 01:51:04,987 --> 01:51:06,522 PRESIDENT OF RASOPOTHIES 3219 01:51:06,522 --> 01:51:06,755 NETWORK. 3220 01:51:06,755 --> 01:51:09,558 BETH? 3221 01:51:09,558 --> 01:51:13,496 >> HELLO. 3222 01:51:13,496 --> 01:51:14,463 THANK YOU TO THE COMMISSION FOR 3223 01:51:14,463 --> 01:51:15,464 INVITING US TO PARTICIPATE 3224 01:51:15,464 --> 01:51:17,933 TODAY. 3225 01:51:17,933 --> 01:51:20,436 MY NAME IS BETH STRONACH, 3226 01:51:20,436 --> 01:51:21,770 PRESIDENT OF ROSSOPATHIES 3227 01:51:21,770 --> 01:51:23,539 NETWORK. 3228 01:51:23,539 --> 01:51:24,907 MY SON SAM, WHICH HOPEFULLY YOU 3229 01:51:24,907 --> 01:51:33,716 CAN SEE THE SLIDES, HE IS 3230 01:51:33,716 --> 01:51:36,418 MINORITY STAR. 3231 01:51:36,418 --> 01:51:39,021 SO RASOPOTHY'S NETWORK IS A 3232 01:51:39,021 --> 01:51:40,155 NON-PROFIT ADVOCACY ORGANIZATION 3233 01:51:40,155 --> 01:51:42,258 FOUNDED IN 2010 DEDICATE TODAY 3234 01:51:42,258 --> 01:51:44,426 ADVANCING RESEARCH ON RASOPOTHY 3235 01:51:44,426 --> 01:51:44,827 CONDITIONS. 3236 01:51:44,827 --> 01:51:46,395 WE DO THIS BY FOSTERING 3237 01:51:46,395 --> 01:51:47,930 COLLABORATION AMONG RESEARCHERS, 3238 01:51:47,930 --> 01:51:48,664 CLINICIANS, AND PATIENT 3239 01:51:48,664 --> 01:51:50,533 COMMUNITIES BY CONVENING 3240 01:51:50,533 --> 01:51:51,267 INTERNATIONAL SCIENTIFIC 3241 01:51:51,267 --> 01:51:53,669 SYMPOSIA, FUNDING PILOT RESEARCH 3242 01:51:53,669 --> 01:51:54,603 PROJECTS, SUPPORTING EARLY 3243 01:51:54,603 --> 01:51:55,604 CAREER INVESTIGATORS AND 3244 01:51:55,604 --> 01:51:56,705 CONNECTING FAMILIES AND PATIENT 3245 01:51:56,705 --> 01:51:59,875 ORGANIZATIONS. 3246 01:51:59,875 --> 01:52:01,544 BY DOING THIS WE CREATE A SENSE 3247 01:52:01,544 --> 01:52:03,479 OF URGENCY AND SHARED COMMITMENT 3248 01:52:03,479 --> 01:52:05,714 TO ACCELERATE KNOWLEDGE AND 3249 01:52:05,714 --> 01:52:09,885 PROGRESS. 3250 01:52:09,885 --> 01:52:10,452 RASOPOTHYS COMPRISE A LARGE 3251 01:52:10,452 --> 01:52:12,521 GROUP OF CONGENITAL GENETIC 3252 01:52:12,521 --> 01:52:13,923 SYNDROMES SEEN IN RED. 3253 01:52:13,923 --> 01:52:16,659 THEIR FEATURES OVERLAP ON A 3254 01:52:16,659 --> 01:52:18,594 CLINICAL SPECTRUM FROM MILD TO 3255 01:52:18,594 --> 01:52:20,462 SEVERE AND THEY SHARE A 3256 01:52:20,462 --> 01:52:21,864 PATHOGENIC MECHANISM. 3257 01:52:21,864 --> 01:52:23,365 MUTATIONS INAPPROPRIATELY 3258 01:52:23,365 --> 01:52:28,370 ACTIVATE THE CELLULAR RAS MAP 3259 01:52:28,370 --> 01:52:30,005 KINASE CASCADE. 3260 01:52:30,005 --> 01:52:32,741 THEY AFFECT AS MANY AS ONE IN 3261 01:52:32,741 --> 01:52:34,944 1,000 BIRTHS ALTHOUGH SOME ARE 3262 01:52:34,944 --> 01:52:35,377 QUITE RARE. 3263 01:52:35,377 --> 01:52:37,046 THESE CONDITIONS IG IS CAN'TLY 3264 01:52:37,046 --> 01:52:38,447 IMPACT NUMEROUS BODY SYSTEMS 3265 01:52:38,447 --> 01:52:39,882 LEADING TO SERIOUS HEALTH 3266 01:52:39,882 --> 01:52:40,950 CHALLENGES AND INCREASED CANCER 3267 01:52:40,950 --> 01:52:41,951 RISK. 3268 01:52:41,951 --> 01:52:42,585 FOR THOSE SIGNIFICANTLY 3269 01:52:42,585 --> 01:52:44,620 AFFECTED, THERE ARE NO CURES, 3270 01:52:44,620 --> 01:52:45,654 ONLY SUPPORTIVE CARE AND 3271 01:52:45,654 --> 01:52:46,155 TREATMENT. 3272 01:52:46,155 --> 01:52:49,224 RELEVANT TO TODAY'S DISCUSSION, 3273 01:52:49,224 --> 01:52:51,760 RASOPOTHYS CAN CAUSE CENTRAL 3274 01:52:51,760 --> 01:52:53,929 CONDUCTING LYMPHATIC ANOMALIES 3275 01:52:53,929 --> 01:52:55,731 AND IT'S ESTIMATED THAT ONE IN 3276 01:52:55,731 --> 01:52:57,199 FIVE INDIVIDUALS WITH RASOPOTHY 3277 01:52:57,199 --> 01:52:58,434 HAVE SOME FORM OF LYMPHATIC 3278 01:52:58,434 --> 01:52:59,134 DYSPLASIA. 3279 01:52:59,134 --> 01:53:00,869 BUT WE SEE OPPORTUNITIES IN 3280 01:53:00,869 --> 01:53:02,204 PROMISING THERAPEUTIC ASSETS IN 3281 01:53:02,204 --> 01:53:03,839 ONCOLOGY, A GROWING NUMBER OF 3282 01:53:03,839 --> 01:53:05,674 CASE STUDIES DESCRIBING OFF 3283 01:53:05,674 --> 01:53:08,911 LABEL USE OF MEK INHIBITORS FOR 3284 01:53:08,911 --> 01:53:10,212 VARIOUS INDICATIONS AND STRONG 3285 01:53:10,212 --> 01:53:11,380 PARTNERSHIPS WITH FAMILY SUPPORT 3286 01:53:11,380 --> 01:53:14,817 GROUPS. 3287 01:53:14,817 --> 01:53:17,219 THE RAS MAP KINASE PATHWAY IS A 3288 01:53:17,219 --> 01:53:18,854 CELLULAR SIGNALING PATHWAY 3289 01:53:18,854 --> 01:53:19,855 DEPICTED HERE WITH KEY PROTEINS 3290 01:53:19,855 --> 01:53:21,857 IN THE SIGNALING RELAYS SHOWN IN 3291 01:53:21,857 --> 01:53:23,692 THE OVALS. 3292 01:53:23,692 --> 01:53:26,195 MAPPED ON TO THIS PATHWAY ARE 3293 01:53:26,195 --> 01:53:27,262 THE RASOPOTHY SYNDROMES CAUSED 3294 01:53:27,262 --> 01:53:29,098 BY GERMLINE RAS PATHWAY 3295 01:53:29,098 --> 01:53:30,466 MUTATIONS IN A LARGE NUMBER OF 3296 01:53:30,466 --> 01:53:31,667 PROTEINS IN THIS PATHWAY. 3297 01:53:31,667 --> 01:53:34,003 THE VAST MAJORITY OF HUMAN 3298 01:53:34,003 --> 01:53:36,338 RASOPOTHY VARIANTS ARE DOMINANT, 3299 01:53:36,338 --> 01:53:40,409 ACTIVATING KN MUTATIONS, 3300 01:53:40,409 --> 01:53:41,510 INTERMEDIATE IN STRENGTH BETWEEN 3301 01:53:41,510 --> 01:53:44,880 THEONICS JEK MUTATIONS AND 3302 01:53:44,880 --> 01:53:45,848 NORMAL SIGNALING. 3303 01:53:45,848 --> 01:53:47,282 INDIVIDUALS WITH RASOPOTHYS CAN 3304 01:53:47,282 --> 01:53:48,717 FACE MANY HEALTH CHALLENGES 3305 01:53:48,717 --> 01:53:50,919 LISTED HERE, ONE OF WHICH IS A 3306 01:53:50,919 --> 01:53:53,889 DEFECTIVE LYMPHATIC SYSTEM. 3307 01:53:53,889 --> 01:53:56,492 SEVERAL DECADES OLD PUBLICATIONS 3308 01:53:56,492 --> 01:53:58,293 DESCRIBE LYMPHATIC ISSUES IN 3309 01:53:58,293 --> 01:53:59,928 PEOPLE WITH NOONAN SYNDROME, ONE 3310 01:53:59,928 --> 01:54:01,697 OF THE RASOPOTHYS, YET THIS 3311 01:54:01,697 --> 01:54:03,399 ASPECT OF THESE SYNDROMES HAS 3312 01:54:03,399 --> 01:54:05,167 BEEN POORLY STUDIED. 3313 01:54:05,167 --> 01:54:08,904 AS RECENTLY AS 2022, PHYSICIAN 3314 01:54:08,904 --> 01:54:11,540 SURVEYS REPORTED HEALTH -- 3315 01:54:11,540 --> 01:54:12,274 SORRY -- RECORDED HEART AND 3316 01:54:12,274 --> 01:54:13,609 LYMPHATIC PROBLEMS AS THE MOST 3317 01:54:13,609 --> 01:54:14,943 SERIOUS FACTORS AFFECTING 3318 01:54:14,943 --> 01:54:17,246 QUALITY OF LIFE IN INFANTS WITH 3319 01:54:17,246 --> 01:54:18,047 NOONAN SYNDROME IN THE UPPER 3320 01:54:18,047 --> 01:54:19,048 LEFT. 3321 01:54:19,048 --> 01:54:21,917 SYMPTOMS CAN ARISE AT ANY AGE 3322 01:54:21,917 --> 01:54:23,585 ACROSS THE LIFESPAN. 3323 01:54:23,585 --> 01:54:24,787 WORK FROM SEVERAL GROUPS 3324 01:54:24,787 --> 01:54:25,688 INCLUDING THE CHILDREN'S 3325 01:54:25,688 --> 01:54:27,756 HOSPITAL OF PHILADELPHIA HAVE 3326 01:54:27,756 --> 01:54:28,757 SUBSTANTIALLY ADVANCED OUR 3327 01:54:28,757 --> 01:54:31,026 UNDERSTANDING OF THE GENETICS OF 3328 01:54:31,026 --> 01:54:32,494 COMPLEX LYMPHATIC ANOMALIES, 3329 01:54:32,494 --> 01:54:34,530 IDENTIFYING GERMLINE AND MOSAIC 3330 01:54:34,530 --> 01:54:36,865 RASOPOTHYS AS A MAJOR CAUSE AND 3331 01:54:36,865 --> 01:54:38,133 DOCUMENTING A RANGE OF 3332 01:54:38,133 --> 01:54:41,070 PHENOTYPES IN THE LOWER LEFT. 3333 01:54:41,070 --> 01:54:43,238 FROM PUBLISHED LITERATURE AND 3334 01:54:43,238 --> 01:54:44,573 OUTREACH TO FAMILIES WITH 3335 01:54:44,573 --> 01:54:46,442 VARIOUS RASOPOTHY SYNDROMES AND 3336 01:54:46,442 --> 01:54:47,943 DIFFERENT GENE MUTATIONS THAT 3337 01:54:47,943 --> 01:54:49,344 ARE EXPERIENCING LYMPHATIC 3338 01:54:49,344 --> 01:54:50,779 ISSUES, HERE I SUMMARIZE THE 3339 01:54:50,779 --> 01:54:52,815 MOST FREQUENT AND SIGNIFICANT 3340 01:54:52,815 --> 01:54:55,350 HEALTH AND RESOURCE CHALLENGES 3341 01:54:55,350 --> 01:54:55,818 FACED. 3342 01:54:55,818 --> 01:54:56,885 LYMPHATIC PROBLEMS CAN BE 3343 01:54:56,885 --> 01:54:58,520 DIFFICULT TO IDENTIFY AND 3344 01:54:58,520 --> 01:55:00,089 DIAGNOSE IN THE CONTEXT OF A 3345 01:55:00,089 --> 01:55:04,093 SYNDROME WITH MULTIPLE 3346 01:55:04,093 --> 01:55:05,761 COMORBIDITIES. 3347 01:55:05,761 --> 01:55:09,364 STANDARD THERAPIES ARE 3348 01:55:09,364 --> 01:55:09,698 INSUFFICIENT. 3349 01:55:09,698 --> 01:55:10,666 IT'S LIKE A BAND-AID AND NOT A 3350 01:55:10,666 --> 01:55:11,033 CURE. 3351 01:55:11,033 --> 01:55:12,501 THERE IS SILOED CARE. 3352 01:55:12,501 --> 01:55:13,602 VARIOUS SPECIALTIES SAY IT'S NOT 3353 01:55:13,602 --> 01:55:16,472 IN THEIR WHEELHOUSE WHICH POINTS 3354 01:55:16,472 --> 01:55:18,841 TO A LACK OF EXPERT PROVIDERS. 3355 01:55:18,841 --> 01:55:21,176 THERE IS OFTEN A NEED TO TRAVEL 3356 01:55:21,176 --> 01:55:23,979 TO SEEK DIAGNOSIS AND CARE WHICH 3357 01:55:23,979 --> 01:55:25,380 INCURS FINANCIAL COSTS, 3358 01:55:25,380 --> 01:55:27,816 LOGISTICAL STRESSES AND MISSED 3359 01:55:27,816 --> 01:55:30,085 SCHOOL AND WORK, ET CETERA. 3360 01:55:30,085 --> 01:55:33,455 OFF LABEL TREATMENT WITH MEK 3361 01:55:33,455 --> 01:55:34,890 INHIBITORS HAS LITERALLY BEEN A 3362 01:55:34,890 --> 01:55:36,158 LIFE SAVER BUT IT IS COSTLY, 3363 01:55:36,158 --> 01:55:38,060 IT'S DIFFICULT TO OBTAIN AND IT 3364 01:55:38,060 --> 01:55:39,828 POSES SIDE EFFECTS. 3365 01:55:39,828 --> 01:55:42,297 THERE'S A LACK OF TECHNOLOGIES 3366 01:55:42,297 --> 01:55:43,732 AND ASSISTIVE CARE FOR INFANT 3367 01:55:43,732 --> 01:55:46,568 AND PEDIATRIC PATIENTS. 3368 01:55:46,568 --> 01:55:48,003 AND INDIVIDUALS EXPERIENCED 3369 01:55:48,003 --> 01:55:49,905 TRAUMA AND FEAR OF RECURRENCE 3370 01:55:49,905 --> 01:55:55,911 AND WORSENING SYMPTOMS. 3371 01:55:55,911 --> 01:55:59,648 THIS FIGURE DEPICTS THE RAS MAP 3372 01:55:59,648 --> 01:56:01,116 KINASE PATHWAY AGAIN AND THE 3373 01:56:01,116 --> 01:56:02,951 SIGNALING NODE, MEK, THAT IS THE 3374 01:56:02,951 --> 01:56:06,321 TARGET OF MEK INHIBITORS, 3375 01:56:06,321 --> 01:56:09,958 TRAMETINIB AND SELUMETINIBMENT 3376 01:56:09,958 --> 01:56:11,560 THE GREY BOXES SHOW VARIANTS IN 3377 01:56:11,560 --> 01:56:12,995 GENES OF PATIENTS 3378 01:56:12,995 --> 01:56:13,896 THERAPEUTICALLY TREATED WITH 3379 01:56:13,896 --> 01:56:16,098 THESE MEK INHIBITORS WHICH HAVE 3380 01:56:16,098 --> 01:56:17,699 SO FAR DEMONSTRATED REMARKABLE 3381 01:56:17,699 --> 01:56:18,600 EFFECTS. 3382 01:56:18,600 --> 01:56:19,868 FOR OUR COMMUNITY, THE TOP 3383 01:56:19,868 --> 01:56:21,503 WISHES TO IMPROVE THEIR LIVES 3384 01:56:21,503 --> 01:56:22,938 ARE LISTED. 3385 01:56:22,938 --> 01:56:27,843 WE NEED TO EDUCATE EDUCATE DOCD 3386 01:56:27,843 --> 01:56:29,244 EQUIP HOSPITALS TO IDENTIFY AND 3387 01:56:29,244 --> 01:56:30,045 TREAT COMPLEX LYMPHATIC 3388 01:56:30,045 --> 01:56:30,679 DISORDERS. 3389 01:56:30,679 --> 01:56:31,446 THERE NEEDS TO BE COORDINATION 3390 01:56:31,446 --> 01:56:33,148 OF CARE THAT INCLUDES VASCULAR 3391 01:56:33,148 --> 01:56:35,017 AND LYMPHATIC SPECIALISTS. 3392 01:56:35,017 --> 01:56:37,252 WE NEED AFFORDABLE AND 3393 01:56:37,252 --> 01:56:37,853 ACCESSIBLE SUPPORTIVE 3394 01:56:37,853 --> 01:56:39,621 TREATMENTS, INCLUDING MENTAL 3395 01:56:39,621 --> 01:56:41,390 HEALTH, MASSAGE, AND NUTRITIONAL 3396 01:56:41,390 --> 01:56:42,758 HELP. 3397 01:56:42,758 --> 01:56:44,026 PROGRESS IN RESEARCH AND 3398 01:56:44,026 --> 01:56:47,830 KNOWLEDGE OF SYNDROMIC LYMPHATIC 3399 01:56:47,830 --> 01:56:48,063 ISSUES. 3400 01:56:48,063 --> 01:56:49,998 AND WE NEED CLINICAL TRIALS OF 3401 01:56:49,998 --> 01:56:52,734 MOLECULES THAT TARGET THE RAS 3402 01:56:52,734 --> 01:56:54,036 MAP KINASE PATHWAY BEYOND 3403 01:56:54,036 --> 01:56:54,670 ONCOLOGY. 3404 01:56:54,670 --> 01:56:56,839 WE NEED APPROVED, SAFE 3405 01:56:56,839 --> 01:56:58,841 TREATMENTS AND CURES. 3406 01:56:58,841 --> 01:57:00,442 THANK YOU TO THE FAMILIES WHO 3407 01:57:00,442 --> 01:57:01,643 SHARED THEIR EXPERIENCES WITH ME 3408 01:57:01,643 --> 01:57:02,945 AND THANK YOU TO THE COMMISSION 3409 01:57:02,945 --> 01:57:04,079 FOR LISTENING. 3410 01:57:04,079 --> 01:57:05,647 I'D LIKE TO INTRODUCE TWO 3411 01:57:05,647 --> 01:57:07,883 PATIENT RE REPRESENTATIVES WHO E 3412 01:57:07,883 --> 01:57:10,853 WITH ME TODAY, ASHLEY GENELIN 3413 01:57:10,853 --> 01:57:12,955 AND GRETCHEN SPIESS TO REFLECT 3414 01:57:12,955 --> 01:57:17,292 ON THEIR EXPERIENCES. 3415 01:57:17,292 --> 01:57:18,193 >> GOOD MORNING. 3416 01:57:18,193 --> 01:57:20,662 MY NAME IS ASHLEY GENELIN, AND I 3417 01:57:20,662 --> 01:57:22,464 WORK FOR CFC INTERNATIONAL BUT 3418 01:57:22,464 --> 01:57:23,732 EVEN MORE IMPORTANTLY, I AM THE 3419 01:57:23,732 --> 01:57:26,235 MOM OF A LITTLE BOY WHO HAD CFC 3420 01:57:26,235 --> 01:57:26,869 SYNDROME. 3421 01:57:26,869 --> 01:57:28,503 EVERY DAY COUNTLESS CHILDREN ARE 3422 01:57:28,503 --> 01:57:29,805 BORN WITH CONGENITAL LYMPHATIC 3423 01:57:29,805 --> 01:57:31,139 DISORDERS AND TOO MANY ARE LEFT 3424 01:57:31,139 --> 01:57:32,207 TO SUFFER BECAUSE THESE 3425 01:57:32,207 --> 01:57:33,175 CONDITIONS ARE POORLY 3426 01:57:33,175 --> 01:57:34,676 UNDERSTOOD. 3427 01:57:34,676 --> 01:57:36,478 MY SON MYLES WAS ONE OF THEM. 3428 01:57:36,478 --> 01:57:39,081 HE WAS BORN WITH A CONGENITAL 3429 01:57:39,081 --> 01:57:40,315 CHYLOTHORAX. 3430 01:57:40,315 --> 01:57:42,184 FROM HIS VERY FIRST BREATH, THIS 3431 01:57:42,184 --> 01:57:43,518 CONDITION WAS A SILENT THREAT TO 3432 01:57:43,518 --> 01:57:44,019 HIS LIFE. 3433 01:57:44,019 --> 01:57:45,454 BY THE TIME IT WAS FINALLY 3434 01:57:45,454 --> 01:57:46,688 DIAGNOSED WHEN THE EFFUSION WAS 3435 01:57:46,688 --> 01:57:48,857 SO LARGE IT COULD BE SEEN ON 3436 01:57:48,857 --> 01:57:50,659 X-RAY, MYLES WAS ALREADY IN 3437 01:57:50,659 --> 01:57:51,560 RESPIRATORY FAILURE. 3438 01:57:51,560 --> 01:57:53,729 AT THE TIME, MYLES DID NOT HAVE 3439 01:57:53,729 --> 01:57:55,364 A GENETIC DIAGNOSIS, AND THERE 3440 01:57:55,364 --> 01:57:58,066 WAS NO CONCERN FOR ANY TYPE OF 3441 01:57:58,066 --> 01:58:05,540 CONGCONGENITAL LYMPHATIC DISORD. 3442 01:58:05,540 --> 01:58:06,541 A GENETIC DIAGNOSIS WOULDN'T 3443 01:58:06,541 --> 01:58:07,809 COME UNTIL HE WAS 3 MONTHS OLD 3444 01:58:07,809 --> 01:58:09,945 AND BY THEN HE WAS ALREADY 3445 01:58:09,945 --> 01:58:11,313 DEPENDENT ON A VENTILATOR. 3446 01:58:11,313 --> 01:58:12,547 THE DIAGNOSIS WAS JUST THE 3447 01:58:12,547 --> 01:58:15,584 BEGINNING. 3448 01:58:15,584 --> 01:58:16,685 IT DIDN'T STOP THERE. 3449 01:58:16,685 --> 01:58:19,288 HIS FRAGILE LYMPHATIC SYSTEM 3450 01:58:19,288 --> 01:58:20,956 OVERREACTED TO EVERY MEDICAL 3451 01:58:20,956 --> 01:58:21,890 PROCEDURE. 3452 01:58:21,890 --> 01:58:24,960 A ROUTINE TONS ELECT ME, A 3453 01:58:24,960 --> 01:58:26,295 SURGERY MOST CHILDREN RECOVER 3454 01:58:26,295 --> 01:58:28,063 FROM IN DAYS, SENT HIS BODY INTO 3455 01:58:28,063 --> 01:58:28,797 GUT FAILURE. 3456 01:58:28,797 --> 01:58:30,532 FOR A YEAR AND A HALF, MYLES 3457 01:58:30,532 --> 01:58:33,835 LIVED ON TOLD PARENTERAL 3458 01:58:33,835 --> 01:58:37,773 NUTRITION AN ENDURING OVER 18 3459 01:58:37,773 --> 01:58:39,908 CENTRAL LINES BECAUSE OF HIS 3460 01:58:39,908 --> 01:58:40,642 LYMPHATIC SYSTEM OVERREACTION 3461 01:58:40,642 --> 01:58:41,977 CAUSED EACH ONE TO FAIL. 3462 01:58:41,977 --> 01:58:43,645 EVERY ATTEMPT TO HELP HIM SEEMED 3463 01:58:43,645 --> 01:58:44,813 TO UNLEASH NEW COMPLICATIONS. 3464 01:58:44,813 --> 01:58:46,315 HE WAS CONSTANTLY BEING RIPPED 3465 01:58:46,315 --> 01:58:47,649 FROM HIS FAMILY TO UNDERGO 3466 01:58:47,649 --> 01:58:49,751 TESTING, HOSPITAL STAYS AND 3467 01:58:49,751 --> 01:58:50,619 CONVERSATION AFTER CONVERSATION 3468 01:58:50,619 --> 01:58:52,487 ABOUT HOW NOBODY KNEW WHAT TO DO 3469 01:58:52,487 --> 01:58:52,721 NEXT. 3470 01:58:52,721 --> 01:58:54,823 DESPITE OUR EFFORTS, IT TOOK 3471 01:58:54,823 --> 01:58:55,891 WEEKS TO ARRANGE FOR HIS CASE TO 3472 01:58:55,891 --> 01:58:58,293 BE REVIEWED BY EXPERTS AT A 3473 01:58:58,293 --> 01:58:59,294 CHILDREN'S HOSPITAL ACROSS THE 3474 01:58:59,294 --> 01:59:00,329 COUNTRY. 3475 01:59:00,329 --> 01:59:02,264 EACH TIME WE TRIED TO GO, MYLES 3476 01:59:02,264 --> 01:59:03,365 GOT TOO SICK. 3477 01:59:03,365 --> 01:59:05,467 WHEN WE FINALLY MANAGED A VIDEO 3478 01:59:05,467 --> 01:59:07,035 CONSULTATION, IT WAS TOO LATE. 3479 01:59:07,035 --> 01:59:08,870 THERE WERE NO MORE TREATMENTS, 3480 01:59:08,870 --> 01:59:10,205 NO MORE INTERVENTIONS AND NO 3481 01:59:10,205 --> 01:59:12,507 MORE OPTIONS. 3482 01:59:12,507 --> 01:59:13,775 MYLES' CONDITION HAD PROGRESSED 3483 01:59:13,775 --> 01:59:15,544 BEYOND WHAT CURRENT MEDICINE 3484 01:59:15,544 --> 01:59:16,611 COULD ADDRESS. 3485 01:59:16,611 --> 01:59:19,047 MYLES WAS BORN AT AND TREATED 3486 01:59:19,047 --> 01:59:20,515 HIS ENTIRE LIFE AT ONE OF THE 3487 01:59:20,515 --> 01:59:22,617 TOP HOSPITALS IN THE WORLD, AND 3488 01:59:22,617 --> 01:59:25,420 EVEN THEIR ANSWERS WITH SCARCE. 3489 01:59:25,420 --> 01:59:27,756 WHEN OUR SWEET MYLES WAS ONLY 3490 01:59:27,756 --> 01:59:28,824 3 YEARS OLD THE COMPLICATIONS 3491 01:59:28,824 --> 01:59:31,393 FROM HIS CON GENERAL TALL 3492 01:59:31,393 --> 01:59:32,427 LYMPHATIC DISORDER TOOK SUCH A 3493 01:59:32,427 --> 01:59:34,129 TOLL ON HIS QUALITY OF LIFE AND 3494 01:59:34,129 --> 01:59:35,731 HIS OPTIONS FOR THE FUTURE, AND 3495 01:59:35,731 --> 01:59:37,499 WE HAD TO MAKE THE VERY 3496 01:59:37,499 --> 01:59:38,867 DIFFICULT DECISION TO REMOVE THE 3497 01:59:38,867 --> 01:59:39,968 RESPIRATORY SUPPORT THAT HE HAD 3498 01:59:39,968 --> 01:59:42,571 SINCE HIS INITIAL CHYLOTHORAX. 3499 01:59:42,571 --> 01:59:43,905 HE WAS THE FIRST PEDIATRIC 3500 01:59:43,905 --> 01:59:47,142 PATIENT TO UNDERGO A COMPLETE CT 3501 01:59:47,142 --> 01:59:48,910 LIMB FANGIO GRAM AT MAYO CLINIC, 3502 01:59:48,910 --> 01:59:50,178 A CRITICAL DIAGNOSTIC TOOL THAT 3503 01:59:50,178 --> 01:59:51,580 SHOULD HAVE BEEN AVAILABLE TO 3504 01:59:51,580 --> 01:59:52,681 HIM FAR SOONER. 3505 01:59:52,681 --> 01:59:54,616 HIS LIFE WAS A FIGHT AGAINST A 3506 01:59:54,616 --> 01:59:55,917 CONDITION WE DIDN'T FULLY 3507 01:59:55,917 --> 01:59:57,686 UNDERSTAND, AND THE DELAYS IN 3508 01:59:57,686 --> 01:59:59,221 DIAGNOSTICS AND INTERVENTION 3509 01:59:59,221 --> 02:00:00,756 WERE BATTLES THAT WE SHOULDN'T 3510 02:00:00,756 --> 02:00:01,723 HAVE HAD TO FACE. 3511 02:00:01,723 --> 02:00:02,924 MYLES DESERVED BETTER. 3512 02:00:02,924 --> 02:00:05,460 EVERY CHILD BORN WITH A 3513 02:00:05,460 --> 02:00:07,062 CONGENITAL CHYLOTHORAX AND OTHER 3514 02:00:07,062 --> 02:00:08,096 LYMPHATIC DISORDERS DESERVES 3515 02:00:08,096 --> 02:00:09,031 BETTER. 3516 02:00:09,031 --> 02:00:10,899 WITH NEED TO EDUCATE DOCTORS 3517 02:00:10,899 --> 02:00:12,634 ABOUT CONGENITAL LYMPHATIC 3518 02:00:12,634 --> 02:00:13,235 DISORDERS, IMPROVE DIAGNOSTIC 3519 02:00:13,235 --> 02:00:14,403 TOOLS AND MAKE INTERVENTION 3520 02:00:14,403 --> 02:00:16,805 ACCESSIBLE AND TIMELY. 3521 02:00:16,805 --> 02:00:17,639 MYLES' LIFE WAS FILLED WITH 3522 02:00:17,639 --> 02:00:18,840 COURAGE BUT IT SHOULDN'T HAVE 3523 02:00:18,840 --> 02:00:21,243 BEEN FILLED WITH SO MANY 3524 02:00:21,243 --> 02:00:22,044 PREVENTABLE STRUGGLES. 3525 02:00:22,044 --> 02:00:23,912 WE CAN AND MUST DO MORE. 3526 02:00:23,912 --> 02:00:25,414 FOR MYLES AND FOR EVERY CHILD 3527 02:00:25,414 --> 02:00:26,348 LIKE HIM. 3528 02:00:26,348 --> 02:00:34,923 THANK YOU. 3529 02:00:34,923 --> 02:00:36,458 >> THANK YOU FOR ALLOWING ME TO 3530 02:00:36,458 --> 02:00:37,526 SHARROW LIVE YA'S STORY. 3531 02:00:37,526 --> 02:00:38,660 MY NAME IS GRETCHEN SPIESS. 3532 02:00:38,660 --> 02:00:40,562 I'M GOING TO SHARE ABOUT MY 3533 02:00:40,562 --> 02:00:40,829 DAUGHTER. 3534 02:00:40,829 --> 02:00:42,831 SHE'S ALMOST 4 YEARS OLD. 3535 02:00:42,831 --> 02:00:46,935 AND SHE ALSO HAS CARDIO -- 3536 02:00:46,935 --> 02:00:47,669 SYNDROME. 3537 02:00:47,669 --> 02:00:48,603 SHE WAS BORN AT 30 WEEKS AND 3538 02:00:48,603 --> 02:00:50,172 WHEN SHE WAS BORN, WE HAD NO 3539 02:00:50,172 --> 02:00:53,308 IDEA THAT ANYTHING WAS WRONG AT 3540 02:00:53,308 --> 02:00:54,776 THE TIME. 3541 02:00:54,776 --> 02:00:58,213 AND SHE IMMEDIATELY WENT INTO 3542 02:00:58,213 --> 02:01:00,382 RESPIRATORY DISTRESS AS WELL, AS 3543 02:01:00,382 --> 02:01:02,884 SIMILAR TO MYLES. 3544 02:01:02,884 --> 02:01:04,853 AND SHE ENDED UP GETTING HER -- 3545 02:01:04,853 --> 02:01:07,456 SHE WAS INTUBATED ON DAY 2 AND 3546 02:01:07,456 --> 02:01:09,858 ENDED UP GETTING HER 3547 02:01:09,858 --> 02:01:11,126 TRACHEOSTOMY ONE DAY SHY OF HER 3548 02:01:11,126 --> 02:01:13,195 DUE DATE AT 10 WEEKS OLD. 3549 02:01:13,195 --> 02:01:15,063 SHE DID NOT HAVE A CHYLOTHORAX 3550 02:01:15,063 --> 02:01:18,733 AT THAT TIME, BUT SHE DID GET A 3551 02:01:18,733 --> 02:01:23,305 CHYLOTHORAX AT 4 MONTHS OLD, AND 3552 02:01:23,305 --> 02:01:27,509 WE DEALT WITH SOME DIFFICULTIES 3553 02:01:27,509 --> 02:01:28,944 GETTING INSURANCE APPROVAL SO 3554 02:01:28,944 --> 02:01:30,278 GET SOME GENETIC TESTING DONE AT 3555 02:01:30,278 --> 02:01:30,779 THAT TIME. 3556 02:01:30,779 --> 02:01:32,114 WE KNEW BASED ON HER HEART 3557 02:01:32,114 --> 02:01:34,082 DEFECTS THAT SHE LIKELY HAD A 3558 02:01:34,082 --> 02:01:35,517 RASOPOTHY, BUT IN ORDER TO 3559 02:01:35,517 --> 02:01:37,052 FIGURE OUT WHAT TREATMENTS WE 3560 02:01:37,052 --> 02:01:39,988 NEEDED TO PURSUE, WE REALLY 3561 02:01:39,988 --> 02:01:41,523 NEEDED TO KNOW IF SHE REALLY DID 3562 02:01:41,523 --> 02:01:43,058 HAVE A RASOPOTHY. 3563 02:01:43,058 --> 02:01:44,926 AND WE ENDED UP PAYING OUT OF 3564 02:01:44,926 --> 02:01:49,097 POCKET TO GET GENETIC TESTING 3565 02:01:49,097 --> 02:01:50,065 DONE. 3566 02:01:50,065 --> 02:01:51,700 AND WE JUST DID THE RASOPOTHY 3567 02:01:51,700 --> 02:01:53,869 PANEL AND IT CAME BACK WITH THE 3568 02:01:53,869 --> 02:01:54,369 BRAF MUTATION. 3569 02:01:54,369 --> 02:01:56,204 SO WE WORKED WITH THE 3570 02:01:56,204 --> 02:01:58,340 NEONATOLOGISTS WHERE WE WERE 3571 02:01:58,340 --> 02:02:01,209 LOCATED AND ALSO CONTACTED THE 3572 02:02:01,209 --> 02:02:03,979 PEOPLE UP AT CHOP, WHICH WAS ONE 3573 02:02:03,979 --> 02:02:07,149 OF THE LYMPHATIC GREAT HUBS, AND 3574 02:02:07,149 --> 02:02:08,917 WE WERE ABLE TO GET HER 3575 02:02:08,917 --> 02:02:11,953 TRANSFERRED UP THERE AFTER 3576 02:02:11,953 --> 02:02:13,455 GETTING A BIOPSY TO CONFIRM THAT 3577 02:02:13,455 --> 02:02:17,058 SHE HAD PULMONARY LIMB FAN CHECK 3578 02:02:17,058 --> 02:02:18,627 TAI SHA AND THAT'S WHAT WAS 3579 02:02:18,627 --> 02:02:20,228 CAUSING THE CHYLOTHORAX AND SHE 3580 02:02:20,228 --> 02:02:21,530 WASN'T RESPONDING TO TREATMENT. 3581 02:02:21,530 --> 02:02:24,399 SO MY LIT BITTY 6 1/2 POUND 3582 02:02:24,399 --> 02:02:27,135 CHILD AT THAT TIME HAD AN ADULT 3583 02:02:27,135 --> 02:02:28,770 ATRIUM DRAINING HER CHYLOTHORAX, 3584 02:02:28,770 --> 02:02:29,671 WHICH IS KIND OF A SCARY 3585 02:02:29,671 --> 02:02:30,572 THOUGHT. 3586 02:02:30,572 --> 02:02:32,274 THEY WERE REPLACING ALBUMEN AND 3587 02:02:32,274 --> 02:02:34,176 EVERYTHING ELSE BUT WE HAD BEEN 3588 02:02:34,176 --> 02:02:35,577 SAT DOWN WITH THE DOCTORS AND 3589 02:02:35,577 --> 02:02:36,978 TOLD THAT SHE MOST LIKELY WOULD 3590 02:02:36,978 --> 02:02:39,915 NOT MAKE IT. 3591 02:02:39,915 --> 02:02:41,116 BUT THEY WERE WILLING TO TRY. 3592 02:02:41,116 --> 02:02:45,220 SO WE GOT HE HER UP TO CHOP AND 3593 02:02:45,220 --> 02:02:47,589 THEY WERE ABLE TO DO IMAGING. 3594 02:02:47,589 --> 02:02:48,924 BASICALLY HER LYMPHATIC SYSTEM 3595 02:02:48,924 --> 02:02:50,292 LOOKED LIKE A SPIDER WEB. 3596 02:02:50,292 --> 02:02:51,593 THEY HAD GIVEN ME THIS PICTURE 3597 02:02:51,593 --> 02:02:54,596 AND AS A MOM -- OF WHAT THE 3598 02:02:54,596 --> 02:02:55,397 LYMPHATIC SYSTEM SHOULD LOOK 3599 02:02:55,397 --> 02:02:56,932 LIKE AND IT LOOKED VERY LINEAR, 3600 02:02:56,932 --> 02:03:01,870 I GUESS I WOULD SAY, WITH THE 3601 02:03:01,870 --> 02:03:02,137 OLYMPICS. 3602 02:03:02,137 --> 02:03:03,538 WITH HERS SHE HAD LYMPHATIC 3603 02:03:03,538 --> 02:03:07,008 VESSELS WRAPPING AROUND HER 3604 02:03:07,008 --> 02:03:09,311 HEART AND JUST DUMPING INTO THE 3605 02:03:09,311 --> 02:03:10,512 INTERCOSTAL REGION, AND JUST NOT 3606 02:03:10,512 --> 02:03:12,948 THE WAY IT SHOULD LOOK, AND SO 3607 02:03:12,948 --> 02:03:17,519 THEY SAID SHE NEEDED TO GO ON 3608 02:03:17,519 --> 02:03:18,520 TRA MATT ANYBODY. 3609 02:03:18,520 --> 02:03:21,122 WITHIN A MONTH, SHE CAME OFF THE 3610 02:03:21,122 --> 02:03:21,423 VENTILATOR. 3611 02:03:21,423 --> 02:03:22,190 IT WAS AMAZING. 3612 02:03:22,190 --> 02:03:24,526 AND SHE WAS ABLE TO COME HOME AT 3613 02:03:24,526 --> 02:03:25,860 6 MONTHS OLD AND MEET HER 3614 02:03:25,860 --> 02:03:29,998 SICIALTION WHICH WAS AMAZING. 3615 02:03:29,998 --> 02:03:30,465 SIBLINGS. 3616 02:03:30,465 --> 02:03:31,433 WHICH WAS AMAZING. 3617 02:03:31,433 --> 02:03:33,168 SHE DID HAVE TO COME OFF IT 10 3618 02:03:33,168 --> 02:03:34,569 MONTHS LATER BECAUSE OF GI 3619 02:03:34,569 --> 02:03:35,637 BLEEDING. 3620 02:03:35,637 --> 02:03:37,672 WE HAVE NO IDEA IF THAT WAS FROM 3621 02:03:37,672 --> 02:03:39,741 THE MEDICATION OR THE FORMULA 3622 02:03:39,741 --> 02:03:41,376 THAT IT DAIRY IN IT. 3623 02:03:41,376 --> 02:03:42,611 TO MAKE A LONG STORY SHORT, 3624 02:03:42,611 --> 02:03:43,845 ABOUT A YEAR AGO, SHE STARTED 3625 02:03:43,845 --> 02:03:46,214 GOING BACK INTO PULMONARY 3626 02:03:46,214 --> 02:03:47,882 DISTRESS, GOT ANOTHER LUNG 3627 02:03:47,882 --> 02:03:49,217 BIOPSY WHICH AGAIN IS VERY 3628 02:03:49,217 --> 02:03:51,686 INVASIVE SO I THINK DIAGNOSTIC 3629 02:03:51,686 --> 02:03:52,654 INFORMATION THAT WOULD BE LESS 3630 02:03:52,654 --> 02:03:54,322 INVASIVE WOULD BE VERY IMPORTANT 3631 02:03:54,322 --> 02:03:56,825 HERE. 3632 02:03:56,825 --> 02:04:00,362 BUT HER PULMONARY LIMB 3633 02:04:00,362 --> 02:04:01,563 LYMPHANGIECTASIA WAS MUCH WORSE 3634 02:04:01,563 --> 02:04:04,332 SO SHE WENT BACK ON, ALSO 3635 02:04:04,332 --> 02:04:05,867 DEVELOPED PLASTIC BRONCHITIS 3636 02:04:05,867 --> 02:04:08,169 THIS YEAR WHICH IS ANOTHER 3637 02:04:08,169 --> 02:04:09,037 LYMPHATIC ISSUE AND WE'RE ALSO 3638 02:04:09,037 --> 02:04:12,207 NOT SURE IF SHE HAS INTESTINAL 3639 02:04:12,207 --> 02:04:13,408 LYMPHANGIECTASIA BUT AGAIN 3640 02:04:13,408 --> 02:04:14,809 DIAGNOSTICS ARE VERY DIFFICULT. 3641 02:04:14,809 --> 02:04:16,578 SO THAT'S OLIVIA'S STORY. 3642 02:04:16,578 --> 02:04:18,480 SHE IS HAPPY, GROWING, AS SOON 3643 02:04:18,480 --> 02:04:20,649 AS SHE STARTED THE TRE MATT 3644 02:04:20,649 --> 02:04:21,850 ANYBODY IN SEPTEMBER THIS YEAR, 3645 02:04:21,850 --> 02:04:23,051 SHE'S BACK OFF THE VENTILATOR 3646 02:04:23,051 --> 02:04:23,618 AGAIN. 3647 02:04:23,618 --> 02:04:26,388 SO IT WORKS, BUT HOW LONG DO YOU 3648 02:04:26,388 --> 02:04:28,189 STAY ON IT, DOES IT REALLY WORK, 3649 02:04:28,189 --> 02:04:30,292 WHEN CAN YOU GO OFF IT, A LOT OF 3650 02:04:30,292 --> 02:04:32,861 THESE QUESTIONS ARE UNKNOWN. 3651 02:04:32,861 --> 02:04:35,196 IT WOULD BE REALLY HELPFUL TO 3652 02:04:35,196 --> 02:04:37,599 HAVE ANSWERS AS A MOM, WHAT ARE 3653 02:04:37,599 --> 02:04:38,867 THE SIDE EFFECT, ARE THEY REALLY 3654 02:04:38,867 --> 02:04:40,368 COMING FROM THAT OR ALL THESE 3655 02:04:40,368 --> 02:04:42,337 OTHER PROBLEMS THAT ARE PART OF 3656 02:04:42,337 --> 02:04:43,938 THE SYNDROME, HOW DO YOU 3657 02:04:43,938 --> 02:04:47,142 DIFFERENTIATE ALL THIS, WE JUST 3658 02:04:47,142 --> 02:04:50,712 DON'T KNOW. 3659 02:04:50,712 --> 02:04:51,846 >> THANK YOU AGAIN FOR SHARING 3660 02:04:51,846 --> 02:04:54,983 ALL THE STORIES. 3661 02:04:54,983 --> 02:04:56,551 AND WE WILL MOVE TO THE NEXT AND 3662 02:04:56,551 --> 02:04:58,186 THE LAST PRESENTATION BY 3663 02:04:58,186 --> 02:04:59,487 BRITTANY WILLIAMS. 3664 02:04:59,487 --> 02:05:05,527 SHE'S THE FOUNDER AND EXECUTIVE 3665 02:05:05,527 --> 02:05:06,061 DIRECTOR OF BRYLAN'S FEAT 3666 02:05:06,061 --> 02:05:08,530 FOUNDATION. 3667 02:05:08,530 --> 02:05:09,130 BRITTANY? 3668 02:05:09,130 --> 02:05:09,698 >> FIRST, THANK YOU TO THE 3669 02:05:09,698 --> 02:05:12,000 COMMISSION FOR THE OPPORTUNITY 3670 02:05:12,000 --> 02:05:13,134 TO SPEAK TODAY AND A SPECIAL 3671 02:05:13,134 --> 02:05:14,502 THANK YOU TO THE LEADERS OF THE 3672 02:05:14,502 --> 02:05:15,603 ORGANIZATIONS THAT PRESENTED AND 3673 02:05:15,603 --> 02:05:17,539 THE PATIENTS WHO SHARED THEIR 3674 02:05:17,539 --> 02:05:19,741 STORIES, AS IT IS VERY CLEAR TO 3675 02:05:19,741 --> 02:05:21,176 SEE THE SIMILAR STRUGGLES 3676 02:05:21,176 --> 02:05:22,143 THROUGHOUT THE LYMPHATIC 3677 02:05:22,143 --> 02:05:24,379 DISEASES AND THE VERY MUCH 3678 02:05:24,379 --> 02:05:25,413 IMPORTANCE OF FUTURE 3679 02:05:25,413 --> 02:05:26,981 COLLABORATIONS. 3680 02:05:26,981 --> 02:05:28,783 AS MENTIONED, MY NAME IS 3681 02:05:28,783 --> 02:05:29,851 BRITTANY WILLIAMS. 3682 02:05:29,851 --> 02:05:31,619 AND I AM THE FOUNDER AND 3683 02:05:31,619 --> 02:05:32,454 EXECUTIVE DIRECTOR OF THE FIRST 3684 02:05:32,454 --> 02:05:34,322 AND ONLY NON-PROFIT IN THE WORLD 3685 02:05:34,322 --> 02:05:38,560 SPECIFIC TO PEDIATRIC 3686 02:05:38,560 --> 02:05:39,094 LYMPHADEMA, BRYLAN'S FEAT 3687 02:05:39,094 --> 02:05:39,461 FOUNDATION. 3688 02:05:39,461 --> 02:05:40,328 THIS BEAUTIFUL LITTLE GIRL YOU 3689 02:05:40,328 --> 02:05:42,297 SEE HERE IS MY DAUGHTER BRYLAN. 3690 02:05:42,297 --> 02:05:44,366 SHE WAS DIAGNOSED WITH INFANT 3691 02:05:44,366 --> 02:05:45,233 ONSET PRIMARY LYMPHADEMA WHEN 3692 02:05:45,233 --> 02:05:47,902 SHE WAS JUST 11 MONTHS OLD WITH 3693 02:05:47,902 --> 02:05:49,003 NO GENETIC COMPONENT AS WE WERE 3694 02:05:49,003 --> 02:05:52,073 TOLD SHE WAS A FLUKE CASE. 3695 02:05:52,073 --> 02:05:53,475 LYMPHADEMA IS THE CHRONIC 3696 02:05:53,475 --> 02:05:54,709 SWELLING IN PARTS OF THE BODY 3697 02:05:54,709 --> 02:05:57,645 DUE TO THE LYMPHATIC SYSTEM 3698 02:05:57,645 --> 02:05:58,713 DEVELOPING ABNORMALLY OR DAMAGE 3699 02:05:58,713 --> 02:06:00,181 OR TRAUMA OCCURRING, SUCH AS 3700 02:06:00,181 --> 02:06:01,683 CANCER TREATMENT. 3701 02:06:01,683 --> 02:06:04,018 IT IS BECAUSE OF MY PERSONAL 3702 02:06:04,018 --> 02:06:05,754 EXPERIENCE OF STRUGGLING TO NOT 3703 02:06:05,754 --> 02:06:09,657 ONLY FIND A DIAGNOSIS, WHICH 3704 02:06:09,657 --> 02:06:10,658 INCLUDED SEVERAL -- SEEING 3705 02:06:10,658 --> 02:06:12,394 SEVERAL DOCTORS IN SEVERAL 3706 02:06:12,394 --> 02:06:15,230 STATES WITHOUT ANY ANSWERS, BUT 3707 02:06:15,230 --> 02:06:18,066 THEN REALIZING THAT THERE WAS NO 3708 02:06:18,066 --> 02:06:19,634 AFTER-DIAGNOSIS GUIDANCE AND NO 3709 02:06:19,634 --> 02:06:21,669 RESOURCES FOR CHILDREN AND THEIR 3710 02:06:21,669 --> 02:06:23,037 FAMILIES, THAT I WANTED TO DO 3711 02:06:23,037 --> 02:06:23,538 SOMETHING TO GIVE BACK. 3712 02:06:23,538 --> 02:06:26,875 SO IN 2018, I LAUNCHED BRYLAN'S 3713 02:06:26,875 --> 02:06:27,308 FEAT FOUNDATION. 3714 02:06:27,308 --> 02:06:30,145 VERY QUICKLY, I REALIZED THE 3715 02:06:30,145 --> 02:06:31,012 DEPTH THAT MY ORGANIZATION 3716 02:06:31,012 --> 02:06:34,416 NEEDED TO ACCOMMODATE, AND WE 3717 02:06:34,416 --> 02:06:35,850 REVAMPED OUR MISSION FROM JUST 3718 02:06:35,850 --> 02:06:36,518 PROVIDING GARMENTS TO CHILDREN 3719 02:06:36,518 --> 02:06:37,452 IN THE UNITED STATES TO NOW 3720 02:06:37,452 --> 02:06:39,921 HAVING TREATMENT RECIPIENTS IN 3721 02:06:39,921 --> 02:06:41,856 33 COUNTRIES AND COUNTING. 3722 02:06:41,856 --> 02:06:45,593 WE PROVIDE ACCESS TO BANDAGING 3723 02:06:45,593 --> 02:06:47,762 SUPPLIES, CUSTOM GARMENTS, 3724 02:06:47,762 --> 02:06:50,665 VIRTUAL EDUCATION SESSIONS WITH 3725 02:06:50,665 --> 02:06:52,600 CERTIFIED LYMPHADEMA THERAPISTS, 3726 02:06:52,600 --> 02:06:54,135 PNEUMATIC COMPRESSION PUMPS AND 3727 02:06:54,135 --> 02:06:55,670 FINANCIAL AID FOR TREATMENT AND 3728 02:06:55,670 --> 02:06:56,971 SURGICAL OPTIONS, BOTH FOR 3729 02:06:56,971 --> 02:06:59,140 PRIMARY AND SECONDARY PEDIATRIC 3730 02:06:59,140 --> 02:07:02,143 LYMPHADEMA PATIENTS. 3731 02:07:02,143 --> 02:07:05,213 IN 2019, I PARTNERED WITH BETTY 3732 02:07:05,213 --> 02:07:07,982 WESTBROOK, PTA, CLT, LYMPHADEMA 3733 02:07:07,982 --> 02:07:10,084 ADVOCATE, FOUNDER OF LYMPHADEMA 3734 02:07:10,084 --> 02:07:11,786 PODCAST AND NOW OUR MEDICAL 3735 02:07:11,786 --> 02:07:12,520 ADVISOR FOR BRYLAN'S FEAT 3736 02:07:12,520 --> 02:07:15,757 FOUNDATION OR BFF AS WE CALL TO 3737 02:07:15,757 --> 02:07:16,825 CREATE THE FIRST EVER SUMMER 3738 02:07:16,825 --> 02:07:20,061 CAMP IN NORTH AMERICA, CAMP 3739 02:07:20,061 --> 02:07:22,297 WATCHME FOR FAMILIES AFFECTED BY 3740 02:07:22,297 --> 02:07:23,298 PEDIATRIC LYMPHADEMA TO CREATE 3741 02:07:23,298 --> 02:07:24,265 COMMUNITY AND CRUCIAL EDUCATION 3742 02:07:24,265 --> 02:07:25,567 OPPORTUNITIES. 3743 02:07:25,567 --> 02:07:29,103 WE HAVE SINCE ALSO COFOUNDED 3744 02:07:29,103 --> 02:07:29,771 PEDIATRIC LYMPHADEMA ALLIANCE AS 3745 02:07:29,771 --> 02:07:32,407 A FOR-PROFIT PARTNER TO BFF, 3746 02:07:32,407 --> 02:07:34,375 WHICH PROVIDES CUSTOMIZABLE 3747 02:07:34,375 --> 02:07:35,477 PEDIATRIC BANDAGING KITS, 3748 02:07:35,477 --> 02:07:38,346 EDUCATION COURSES FOR PEDIATRIC 3749 02:07:38,346 --> 02:07:39,347 TREATMENT CATERED TO FAMILIES, 3750 02:07:39,347 --> 02:07:41,182 AS WELL AS CONTINUING EDUCATION 3751 02:07:41,182 --> 02:07:42,717 COURSES FOR CERTIFIED LYMPHADEMA 3752 02:07:42,717 --> 02:07:52,760 THERAPISTS. 3753 02:07:52,760 --> 02:07:55,096 CHALLENGES FOR PEDIATRIC 3754 02:07:55,096 --> 02:07:56,698 LYMPHADEMA PATIENTS. 3755 02:07:56,698 --> 02:07:57,699 LACK OF KNOWLEDGEABLE DOCTORS 3756 02:07:57,699 --> 02:07:59,801 AND MEDICAL PROFESSIONALS. 3757 02:07:59,801 --> 02:08:02,370 THIS IS HARMFUL AS DOCTORS ARE 3758 02:08:02,370 --> 02:08:03,404 FAILING TO RECOGNIZE EARLY 3759 02:08:03,404 --> 02:08:06,241 SYMPTOMS LEADING TO DELAYED 3760 02:08:06,241 --> 02:08:08,109 DIAGNOSES, AND IN TURN PROLONGED 3761 02:08:08,109 --> 02:08:09,978 DISCOMFORT OR COMPLICATIONS LIKE 3762 02:08:09,978 --> 02:08:11,646 CELLULITIS. 3763 02:08:11,646 --> 02:08:13,047 UNFORTUNATELY, DOCTORS AND 3764 02:08:13,047 --> 02:08:15,416 MEDICAL PROFESSIONALS ARE 3765 02:08:15,416 --> 02:08:16,885 MISDIAGNOSING OR OFFERING 3766 02:08:16,885 --> 02:08:17,652 INAPPROPRIATE TREATMENTS, WHICH 3767 02:08:17,652 --> 02:08:21,222 CAN WORSEN SWELLING AND IMPAIR 3768 02:08:21,222 --> 02:08:23,858 LONG TERM OUTCOMES. 3769 02:08:23,858 --> 02:08:26,995 ADDITIONALLY, THEIR LACK OF 3770 02:08:26,995 --> 02:08:28,530 AWARENESS DENIES FAMILIES 3771 02:08:28,530 --> 02:08:29,731 CRUCIAL GUIDANCE ON EFFECTIVE 3772 02:08:29,731 --> 02:08:30,965 MANAGEMENT STRATEGY, LEAVING 3773 02:08:30,965 --> 02:08:32,267 THEM TO NAVIGATE THE CONDITION 3774 02:08:32,267 --> 02:08:34,235 WITHOUT NECESSARY RESOURCES OR 3775 02:08:34,235 --> 02:08:34,969 SUPPORT. 3776 02:08:34,969 --> 02:08:36,871 THIS GAP IN KNOWLEDGE 3777 02:08:36,871 --> 02:08:38,139 PERPETUATES A CYCLE OF 3778 02:08:38,139 --> 02:08:39,807 UNDERTREATMENT AND MISSED 3779 02:08:39,807 --> 02:08:40,742 OPPORTUNITIES FOR EARLY 3780 02:08:40,742 --> 02:08:42,443 INTERVENTION THAT COULD IMPROVE 3781 02:08:42,443 --> 02:08:44,712 QUALITY OF LIFE. 3782 02:08:44,712 --> 02:08:46,147 EARLY INTERVENTION IS A KEY 3783 02:08:46,147 --> 02:08:48,483 FACTOR IN SUCCESSFUL LYMPHADEMA 3784 02:08:48,483 --> 02:08:50,618 MANAGEMENT, AND TO HINDER THIS 3785 02:08:50,618 --> 02:08:51,719 POPULATION OF THIS OPPORTUNITY 3786 02:08:51,719 --> 02:08:55,290 FOR SUCCESS IS NOT OKAY. 3787 02:08:55,290 --> 02:08:59,127 THESE SIGNIFICANT FACTORS LOAD D 3788 02:08:59,127 --> 02:09:00,461 TO LIFE-THREATENING SITUATIONS 3789 02:09:00,461 --> 02:09:02,430 SUCH AS A CHILD THAT HAS A CLEAR 3790 02:09:02,430 --> 02:09:04,165 LYMPHADEMA DIAGNOSIS BUT HAS AN 3791 02:09:04,165 --> 02:09:06,167 ONSET INFECTION THAT IS NOT 3792 02:09:06,167 --> 02:09:07,468 PROPERLY TREATED, AND THEN 3793 02:09:07,468 --> 02:09:08,303 CAUSES IRREVERSIBLE FURTHER 3794 02:09:08,303 --> 02:09:10,204 DAMAGE TO THEIR LYMPHATIC 3795 02:09:10,204 --> 02:09:11,306 SYSTEM, WORSENING ILLNESS SUCH 3796 02:09:11,306 --> 02:09:15,543 AS SEPSIS AND EVEN DEATH. 3797 02:09:15,543 --> 02:09:18,212 UNFORTUNATELY, -- UNFORTUNATELY, 3798 02:09:18,212 --> 02:09:19,747 WE HAVE HAD THIS HAPPEN TO THREE 3799 02:09:19,747 --> 02:09:23,851 CHILDREN UNDER THE AGE OF 3800 02:09:23,851 --> 02:09:25,086 5 WITHIN OUR ORGANIZATION 3801 02:09:25,086 --> 02:09:25,687 RECENTLY. 3802 02:09:25,687 --> 02:09:27,455 SCARCE ACCESS TO SPECIALIZED AND 3803 02:09:27,455 --> 02:09:30,158 AFFORDABLE CARE. 3804 02:09:30,158 --> 02:09:31,225 AFTER DIAGNOSIS, THE NEXT STEP 3805 02:09:31,225 --> 02:09:33,928 IS TYPICALLY BEING REFERRED TO A 3806 02:09:33,928 --> 02:09:34,562 CERTIFIED LYMPHADEMA THERAPIST 3807 02:09:34,562 --> 02:09:35,863 FOR TREATMENT. 3808 02:09:35,863 --> 02:09:37,599 THE ISSUE HERE IS THAT CLTs 3809 02:09:37,599 --> 02:09:39,801 ARE SCARCE FOR ALL LYMPHADEMA 3810 02:09:39,801 --> 02:09:41,769 PATIENTS, BUT ACCESS TO ONE FOR 3811 02:09:41,769 --> 02:09:43,438 CHILDREN IS AN IMMENSE HURDLE, 3812 02:09:43,438 --> 02:09:45,707 AS MANY HAVE NEVER TREATED A 3813 02:09:45,707 --> 02:09:48,343 CHILD OR THEY WORK IN A HOSPITAL 3814 02:09:48,343 --> 02:09:49,677 SYSTEM OR A CLINIC THAT DOES NOT 3815 02:09:49,677 --> 02:09:51,512 ALLOW THEM TO TREAT CHILDREN. 3816 02:09:51,512 --> 02:09:55,683 THIS CAUSES DELAYS IN MANAGING 3817 02:09:55,683 --> 02:09:57,018 THE CONDITION AND THE 3818 02:09:57,018 --> 02:09:58,753 POSSIBILITY OF INAPPROPRIATE OR 3819 02:09:58,753 --> 02:10:00,955 INEFFECTIVE CARE, WHICH CAN LEAD 3820 02:10:00,955 --> 02:10:02,223 TO COMPLICATIONS, WORSENING 3821 02:10:02,223 --> 02:10:05,526 SYMPTOMS OR INFECTIONS. 3822 02:10:05,526 --> 02:10:06,594 SPECIALIZED TREATMENT SUCH AS 3823 02:10:06,594 --> 02:10:08,630 COMPRESSION THERAPY, MANUAL 3824 02:10:08,630 --> 02:10:11,165 LYMPHATIC DRAINAGE OR SURGICAL 3825 02:10:11,165 --> 02:10:11,899 INTERVENTIONS ARE EXPENSIVE AND 3826 02:10:11,899 --> 02:10:13,434 OFTEN NOT COVERED BY INSURANCE, 3827 02:10:13,434 --> 02:10:16,070 PLACING A HUGE FINANCIAL BURDEN. 3828 02:10:16,070 --> 02:10:17,639 FAMILIES MAY NEED TO TRAVEL LONG 3829 02:10:17,639 --> 02:10:19,807 DISTANCES TO ACCESS SPECIALISTS, 3830 02:10:19,807 --> 02:10:21,676 ADDING LOGISTICAL AND FURTHER 3831 02:10:21,676 --> 02:10:23,311 FINANCIAL STRAIN, PARTICULARLY 3832 02:10:23,311 --> 02:10:26,047 FOR THOSE IN RURAL OR 3833 02:10:26,047 --> 02:10:26,447 UNDERSERVED AREAS. 3834 02:10:26,447 --> 02:10:28,483 THE LACK OF ACCESS AND 3835 02:10:28,483 --> 02:10:30,385 AFFORDABLE CARE CAN CAUSE 3836 02:10:30,385 --> 02:10:33,588 STRESS, FRUSTRATION, AND FEELING 3837 02:10:33,588 --> 02:10:34,956 OF HELPLESSNESS IN FAMILIES, 3838 02:10:34,956 --> 02:10:36,257 WHILE CHILDREN MAY EXPERIENCE 3839 02:10:36,257 --> 02:10:37,592 PROLONGED DISCOMFORT AND LIMITED 3840 02:10:37,592 --> 02:10:39,894 MOBILITY. 3841 02:10:39,894 --> 02:10:42,997 MINIMAL EDUCATION RESOURCES. 3842 02:10:42,997 --> 02:10:45,066 THE ORGANIZATIONS WITHIN THE 3843 02:10:45,066 --> 02:10:46,734 LYMPHADEMA COMMUNITY, 3844 02:10:46,734 --> 02:10:47,902 MANUFACTURERS AND THE CONTINUING 3845 02:10:47,902 --> 02:10:48,903 EDUCATION SCHOOLS HAVE MINIMAL 3846 02:10:48,903 --> 02:10:50,638 TO NO EDUCATION RESOURCES 3847 02:10:50,638 --> 02:10:51,739 SPECIFIC TO PEDIATRIC 3848 02:10:51,739 --> 02:10:53,274 LYMPHADEMA. 3849 02:10:53,274 --> 02:10:55,276 ADDRESSING THE LACK OF EDUCATION 3850 02:10:55,276 --> 02:10:57,078 RESOURCES FOR PEDIATRIC 3851 02:10:57,078 --> 02:10:57,979 LYMPHADEMA REQUIRES A 3852 02:10:57,979 --> 02:10:59,447 MULTIFACETED APPROACH INVOLVING 3853 02:10:59,447 --> 02:11:03,184 HEALTHCARE PROVIDERS, ADVOCACY 3854 02:11:03,184 --> 02:11:05,219 GROUPS, COMMUNITY NON-PROFITS, 3855 02:11:05,219 --> 02:11:06,187 CONTINUING EDUCATION SCHOOLS, 3856 02:11:06,187 --> 02:11:07,755 AND FAMILIES. 3857 02:11:07,755 --> 02:11:10,358 THE MOST IMPORTANT AREA TO FOCUS 3858 02:11:10,358 --> 02:11:11,459 ON WOULD BE THE SCHOOLS TO 3859 02:11:11,459 --> 02:11:13,428 ENSURE MORE CLTs HAVE AN 3860 02:11:13,428 --> 02:11:14,429 UNDERSTANDING OF THE 3861 02:11:14,429 --> 02:11:15,797 MODIFICATIONS NEEDED WHEN 3862 02:11:15,797 --> 02:11:17,265 TREATING A CHILD. 3863 02:11:17,265 --> 02:11:19,133 CLTs ARE A PARENT OR 3864 02:11:19,133 --> 02:11:20,535 CAREGIVER'S MAIN RESOURCE AND 3865 02:11:20,535 --> 02:11:22,203 LIFE LINE WHEN IT COMES TO 3866 02:11:22,203 --> 02:11:23,204 SUCCESSFULLY MANAGING THEIR 3867 02:11:23,204 --> 02:11:25,807 CHILD'S CONDITION. 3868 02:11:25,807 --> 02:11:27,475 LIMITED COMMUNITY FOR PATIENTS 3869 02:11:27,475 --> 02:11:31,345 AND THEIR FAMILIES. 3870 02:11:31,345 --> 02:11:33,047 THIS CAN LEADS TO FEELINGS OF 3871 02:11:33,047 --> 02:11:34,482 ISOLATION AND LACK OF EMOTIONAL 3872 02:11:34,482 --> 02:11:36,551 SUPPORT AS FAMILIES MAY STRUGGLE 3873 02:11:36,551 --> 02:11:39,053 TO CONNECT WITH OTHERS WHO WOULD 3874 02:11:39,053 --> 02:11:42,890 UNDERSTAND THEIR CHALLENGES. 3875 02:11:42,890 --> 02:11:45,026 THIS GAP OFTEN LEAVES PARENTS 3876 02:11:45,026 --> 02:11:47,295 WITHOUT ACCESS TO SHARED 3877 02:11:47,295 --> 02:11:49,263 EXPERIENCES OR PRACTICAL ADVICE 3878 02:11:49,263 --> 02:11:51,532 FOR MANAGING THEIR CONDITION, 3879 02:11:51,532 --> 02:11:54,435 AND WITHOUT A SOLID NETWORK, 3880 02:11:54,435 --> 02:11:55,703 CHILDREN MAY FACE DIFFICULTY IN 3881 02:11:55,703 --> 02:11:57,605 BUILDING SELF-CONFIDENCE, AS 3882 02:11:57,605 --> 02:11:59,707 WELL AS COMPLIANCE OF TREATMENT. 3883 02:11:59,707 --> 02:12:01,743 AND PARENTS MAY FIND IT HARDER 3884 02:12:01,743 --> 02:12:03,511 TO ADVOCATE FOR NECESSARY 3885 02:12:03,511 --> 02:12:05,179 ACCOMMODATIONS IN SCHOOLS AND 3886 02:12:05,179 --> 02:12:10,084 HEALTHCARE SETTINGS. 3887 02:12:10,084 --> 02:12:11,719 IF ALSO HINDERS AWARENESS AND 3888 02:12:11,719 --> 02:12:13,654 RESOURCE SHARING, MAKING IT 3889 02:12:13,654 --> 02:12:14,989 HARDER TO FIND SPECIALIZED CARE 3890 02:12:14,989 --> 02:12:16,390 AND EDUCATIONAL MATERIALS. 3891 02:12:16,390 --> 02:12:17,325 LY NOW HAND OFF THE NEXT SLIDE 3892 02:12:17,325 --> 02:12:19,861 TO OUR MEDICAL ADVISOR, BETTY 3893 02:12:19,861 --> 02:12:24,198 WESTBROOK. 3894 02:12:24,198 --> 02:12:25,700 >> THANK YOU, BRITTANY. 3895 02:12:25,700 --> 02:12:26,901 ALSO THANK YOU FOR ALLOWING ME 3896 02:12:26,901 --> 02:12:28,035 TO PRESENT TODAY. 3897 02:12:28,035 --> 02:12:30,938 AND ALSO TO HEAR FROM THE OTHER 3898 02:12:30,938 --> 02:12:33,808 PRESENTERS BECAUSE IT'S REALLY 3899 02:12:33,808 --> 02:12:36,010 COURAGEOUS, WHAT ALL OF THESE 3900 02:12:36,010 --> 02:12:37,612 MOTHERS HONESTLY HAVE BEEN ABLE 3901 02:12:37,612 --> 02:12:38,079 TO DO. 3902 02:12:38,079 --> 02:12:39,881 AND I APPRECIATE THE MEDICAL 3903 02:12:39,881 --> 02:12:40,848 PROFESSIONALS WHO ARE PART OF 3904 02:12:40,848 --> 02:12:42,049 THAT AND SUPPORTING THEM AS 3905 02:12:42,049 --> 02:12:47,889 WELL. 3906 02:12:47,889 --> 02:12:51,359 SO TO HIGHLIGHT PART OF WHAT WE 3907 02:12:51,359 --> 02:12:52,426 REALLY DON'T WANT TO TALK ABOUT 3908 02:12:52,426 --> 02:12:53,961 AS CLINICIANS OR EVEN AS PARENTS 3909 02:12:53,961 --> 02:12:57,899 IS THAT PEDIATRIC LYMPHADEMA HAS 3910 02:12:57,899 --> 02:13:01,435 A HIGHER RISK DUE TO THE 3911 02:13:01,435 --> 02:13:04,705 INFECTION OF THESE CHILDREN NOT 3912 02:13:04,705 --> 02:13:06,040 SURVIVING AN INFECTION. 3913 02:13:06,040 --> 02:13:11,712 AND WE HAVE HAD UNFORTUNATELY 3914 02:13:11,712 --> 02:13:15,550 THREE TRAGIC DEATHS OF OUR 3915 02:13:15,550 --> 02:13:18,386 RECIPIENTS WHO WERE INNATIONAL. 3916 02:13:18,386 --> 02:13:21,823 THE ONE WAS -- WE DID HAVE A 3917 02:13:21,823 --> 02:13:23,257 NEAR -- OR LUCKILY LIKE A MISS 3918 02:13:23,257 --> 02:13:25,092 ON THAT, WE HAD A RECIPIENT 3919 02:13:25,092 --> 02:13:26,861 WHO'S UNDER THE AGE OF 2, AND 3920 02:13:26,861 --> 02:13:27,628 THEY LIVE IN MINNESOTA AND THEY 3921 02:13:27,628 --> 02:13:32,700 HAD HAD A TONS ELEC TONS LEK TOD 3922 02:13:32,700 --> 02:13:35,036 ADENOID REMOVAL, AND WHEN THAT 3923 02:13:35,036 --> 02:13:35,870 CHILD WENT HOME AND DEVELOPED 3924 02:13:35,870 --> 02:13:37,238 SWELLING AND REDNESS, THE 3925 02:13:37,238 --> 02:13:40,808 MEDICAL TEAM ADVISED IT WAS JUST 3926 02:13:40,808 --> 02:13:42,243 ANOTHER REACTION TO TAPE AND 3927 02:13:42,243 --> 02:13:44,345 ADVISED THE PARENTS TO GIVE THE 3928 02:13:44,345 --> 02:13:45,179 CHILD BENADRYL UNTIL THEY COULD 3929 02:13:45,179 --> 02:13:46,814 GET BACK INTO CLINIC OR HOSPITAL 3930 02:13:46,814 --> 02:13:49,350 ON MONDAY. 3931 02:13:49,350 --> 02:13:52,119 AND THIS CHILD PRESENTED WITH 3932 02:13:52,119 --> 02:13:53,521 GLOBAL LYMPHADEMA, IT WAS 3933 02:13:53,521 --> 02:13:54,322 ALREADY PRESENT IN THEIR FACE, 3934 02:13:54,322 --> 02:13:56,757 AND SO THEY ACTUALLY WERE HAVING 3935 02:13:56,757 --> 02:13:58,593 A REALLY SEVERE CELLULITIS 3936 02:13:58,593 --> 02:14:00,294 INFECTION FROM THE ADENOID 3937 02:14:00,294 --> 02:14:03,931 REMOVAL, AND SO THIS CHILD WAS 3938 02:14:03,931 --> 02:14:07,802 AT THE VERY HIGHEST SEPTIC LEVEL 3939 02:14:07,802 --> 02:14:09,470 BY THE TIME THEY WERE ABLE TO DO 3940 02:14:09,470 --> 02:14:10,905 THE BLOOD PANEL. 3941 02:14:10,905 --> 02:14:12,773 AND ISSUE THE I.V. ANTIBIOTICS. 3942 02:14:12,773 --> 02:14:13,975 IT'S THINGS LIKE THIS THAT WE 3943 02:14:13,975 --> 02:14:15,710 SEE WHERE THE EDUCATION AND 3944 02:14:15,710 --> 02:14:18,479 AWARENESS REALLY IS CRITICAL AND 3945 02:14:18,479 --> 02:14:20,147 IS ACTUALLY LIFE OR DEATH FOR 3946 02:14:20,147 --> 02:14:21,916 SOME OF THESE KIDDOS WHO GET TO 3947 02:14:21,916 --> 02:14:26,087 THAT POINT. 3948 02:14:26,087 --> 02:14:27,154 SO ONE OF THE MAJOR THINGS WE'RE 3949 02:14:27,154 --> 02:14:28,589 GOING TO TALK ABOUT IS AWARENESS 3950 02:14:28,589 --> 02:14:29,957 AND EDUCATION, AND MANY OTHERS 3951 02:14:29,957 --> 02:14:30,925 HAVE ALSO INCLUDED THIS IN THEIR 3952 02:14:30,925 --> 02:14:33,527 SLIDE. 3953 02:14:33,527 --> 02:14:34,962 RIGHT NOW KNOWS MEDICAL 3954 02:14:34,962 --> 02:14:36,063 PROFESSIONALS INCLUDING DOCTORS, 3955 02:14:36,063 --> 02:14:37,632 THEY RECEIVE LITTLE TO NO 3956 02:14:37,632 --> 02:14:39,800 TRAINING ON PEDIATRIC LYMPHADEMA 3957 02:14:39,800 --> 02:14:41,769 OR CERTIFICATION PROGRAMS, AS I 3958 02:14:41,769 --> 02:14:43,671 AM A CLT. 3959 02:14:43,671 --> 02:14:45,072 THEY OFTEN PRIORITIZE CONDITIONS 3960 02:14:45,072 --> 02:14:48,075 LIKE BREAST CANCER AND 3961 02:14:48,075 --> 02:14:48,542 CARDIOVASCULAR-RELATED 3962 02:14:48,542 --> 02:14:49,710 LYMPHADEMA, LEAVING PEDIATRIC 3963 02:14:49,710 --> 02:14:51,279 CASES OVERLOOKED. 3964 02:14:51,279 --> 02:14:54,949 AND THIS GAP LEADS TO DELAY IN 3965 02:14:54,949 --> 02:14:57,084 DIAGNOSIS, MISDIAGNOSIS AND EVEN 3966 02:14:57,084 --> 02:14:58,519 INADEQUATE FOLLOW-UP CARE FOR 3967 02:14:58,519 --> 02:14:59,487 CHILDREN WHO DESPERATELY NEED 3968 02:14:59,487 --> 02:14:59,954 IT. 3969 02:14:59,954 --> 02:15:04,458 FOR EXAMPLE, MANY PEDIATRICIANS 3970 02:15:04,458 --> 02:15:06,160 ARE UNAWARE OF HOW LYMPHADEMA 3971 02:15:06,160 --> 02:15:07,929 CAN MANIFEST IN A CHILD OR HOW 3972 02:15:07,929 --> 02:15:10,765 TO MANAGE IT EFFECTIVELY: THIS 3973 02:15:10,765 --> 02:15:12,333 IMPACTS THE CARE THESE CHILDREN 3974 02:15:12,333 --> 02:15:13,701 RECEIVE AND THEIR LONG TERM 3975 02:15:13,701 --> 02:15:13,968 OUTCOMES. 3976 02:15:13,968 --> 02:15:17,405 FOR THE SAKE OF TIME, I WILL GO 3977 02:15:17,405 --> 02:15:18,673 QUICKLY THROUGH MY NEXT TWO 3978 02:15:18,673 --> 02:15:22,977 POINTS. 3979 02:15:22,977 --> 02:15:25,079 ACCESS TO TREATMENT IS ALSO AN 3980 02:15:25,079 --> 02:15:25,313 ISSUE. 3981 02:15:25,313 --> 02:15:27,982 WITHOUT PROPER TREATMENT, 3982 02:15:27,982 --> 02:15:28,916 CHILDREN FACE SEVERE 3983 02:15:28,916 --> 02:15:30,985 CONSEQUENCES SUCH AS 3984 02:15:30,985 --> 02:15:32,353 PSYCHOLOGICAL DISTRESS, OR THE 3985 02:15:32,353 --> 02:15:34,088 PEE TICK ISSUES, 3986 02:15:34,088 --> 02:15:35,122 LIFE-THREATENING INFECTIONS LIKE 3987 02:15:35,122 --> 02:15:35,923 CELLULITIS OR THE POSSIBILITY OF 3988 02:15:35,923 --> 02:15:36,157 DEATH. 3989 02:15:36,157 --> 02:15:40,461 AND WE HAVE SEEN THIS FIRSTHAND. 3990 02:15:40,461 --> 02:15:42,396 AND THE TREATMENT THAT THEY'RE 3991 02:15:42,396 --> 02:15:44,098 NEEDING ACCESS TO IS COMPLETE 3992 02:15:44,098 --> 02:15:47,501 DEACON JESSTIVE THERAPY THAT IS 3993 02:15:47,501 --> 02:15:51,739 NOT THE ADULT PRESCRIPTION, I 3994 02:15:51,739 --> 02:15:53,641 GUESS YOU WOULD SAY, BUT THE CDT 3995 02:15:53,641 --> 02:15:56,744 FOR CHILDREN BECAUSE THAT IS 3996 02:15:56,744 --> 02:15:58,045 SPECIALIZED FROM WHAT THEY LEARN 3997 02:15:58,045 --> 02:16:00,281 IN COURSES TO TREAT ADULT 3998 02:16:00,281 --> 02:16:01,716 LYMPHADEMA. 3999 02:16:01,716 --> 02:16:03,284 AND FINALLY, RESEARCH GAPS, 4000 02:16:03,284 --> 02:16:04,585 PEDIATRIC PRIMARY LYMPHADEMA IS 4001 02:16:04,585 --> 02:16:08,255 RARE AND THIS RARITY CREATES A 4002 02:16:08,255 --> 02:16:10,958 FUNDING GAP WE AS BFF, WE 4003 02:16:10,958 --> 02:16:13,027 RECEIVE REFERRAL FROM LEADING 4004 02:16:13,027 --> 02:16:14,795 HOSPITALS IN THE COUNTRY BECAUSE 4005 02:16:14,795 --> 02:16:16,564 WE HAVE SOME RESOURCES THAT THEY 4006 02:16:16,564 --> 02:16:19,967 ARE NOT ABLE TO PROVIDE, SO WE 4007 02:16:19,967 --> 02:16:21,736 SEE THAT EVEN CENTERS OF 4008 02:16:21,736 --> 02:16:25,339 EXCELLENCE, INSTITUTIONS THAT 4009 02:16:25,339 --> 02:16:26,374 PARENTS EXPECT TO HAVE THE 4010 02:16:26,374 --> 02:16:29,910 ANSWER, THEY REFER TO US BECAUSE 4011 02:16:29,910 --> 02:16:33,481 WE HAVE A SPECIALTY WE CAN 4012 02:16:33,481 --> 02:16:34,348 PROVIDE TO THEM. 4013 02:16:34,348 --> 02:16:38,953 WHAT WE REALLY NEED ARE 4014 02:16:38,953 --> 02:16:40,855 DESIGNATED CENTERS FOR BORT 4015 02:16:40,855 --> 02:16:42,690 TREATMENT AND EDUCATION THAT CAN 4016 02:16:42,690 --> 02:16:43,357 ADDRESS THESE GAPS AND GIVE 4017 02:16:43,357 --> 02:16:44,392 THESE FAMILIES HOPE. 4018 02:16:44,392 --> 02:16:44,925 THERE IS HOPE. 4019 02:16:44,925 --> 02:16:46,327 SO BY USING RESEARCH AND CASE 4020 02:16:46,327 --> 02:16:48,095 STUDIES TO CREATE ACCESSIBLE 4021 02:16:48,095 --> 02:16:49,430 EFFECTIVE EDUCATIONAL RESOURCES 4022 02:16:49,430 --> 02:16:50,631 WE CAN BUILD AWARENESS IN 4023 02:16:50,631 --> 02:16:51,399 MEDICAL TRAINING CENTERS AND 4024 02:16:51,399 --> 02:16:53,434 THIS WILL PLEAD TO EARLIER 4025 02:16:53,434 --> 02:16:55,069 DIAGNOSIS, BETTER MANAGEMENT AND 4026 02:16:55,069 --> 02:16:55,636 SUPPORT CHILDREN AND THEIR 4027 02:16:55,636 --> 02:16:56,604 FAMILIES DESERVE. 4028 02:16:56,604 --> 02:16:58,339 I BELIEVE WE DO HAVE ONE FINAL 4029 02:16:58,339 --> 02:17:07,348 SLIDE HERE. 4030 02:17:07,348 --> 02:17:08,983 >> YES, OUR THREE WISHES. 4031 02:17:08,983 --> 02:17:11,952 SO OF COURSE I THINK OVERALL 4032 02:17:11,952 --> 02:17:14,588 EVERYONE WISHES FOR A CURE, BUT 4033 02:17:14,588 --> 02:17:17,091 MOVING PAST THAT, I WOULD LOVE 4034 02:17:17,091 --> 02:17:19,527 TO SEE PEDIATRIC LYMPHADEMA 4035 02:17:19,527 --> 02:17:21,595 BECOME MORE OF A PRIORITY IN ALL 4036 02:17:21,595 --> 02:17:23,030 ASPECTS: AWARENESS, EDUCATION, 4037 02:17:23,030 --> 02:17:23,831 TREATMENT AND RESEARCH. 4038 02:17:23,831 --> 02:17:25,499 HAVING DOCTORS AND CLINICIANS 4039 02:17:25,499 --> 02:17:27,368 BETTER EDUCATE THEMSELVES ON THE 4040 02:17:27,368 --> 02:17:30,404 UNIQUE NEEDS OF THESE PATIENTS 4041 02:17:30,404 --> 02:17:31,605 WOULD TRULY MAKE A SIGNIFICANT 4042 02:17:31,605 --> 02:17:34,642 DIFFERENCE IN OVERALL PATIENT 4043 02:17:34,642 --> 02:17:35,176 OUTCOMES. 4044 02:17:35,176 --> 02:17:36,544 AND MOST IMPORTANTLY, I WISH TO 4045 02:17:36,544 --> 02:17:39,713 CONTINUE PROVIDING FOR THESE 4046 02:17:39,713 --> 02:17:41,749 AMAZING LYMPHADEMA WARRIOR, BUT 4047 02:17:41,749 --> 02:17:42,750 OUR ORGANIZATION CANNOT DO IT 4048 02:17:42,750 --> 02:17:43,784 ALONE. 4049 02:17:43,784 --> 02:17:45,052 COLLABORATION IS KEY AND I HOPE 4050 02:17:45,052 --> 02:17:47,288 THAT MORE OF THE MEMBERS OF THIS 4051 02:17:47,288 --> 02:17:48,355 COMMUNITY WILL JOIN US IN 4052 02:17:48,355 --> 02:17:49,356 ADVANCING OUR MISSION. 4053 02:17:49,356 --> 02:17:50,291 THANK YOU VERY MUCH FOR YOUR 4054 02:17:50,291 --> 02:17:53,761 TIME AND ATTENTION. 4055 02:17:53,761 --> 02:17:55,930 >> THANK YOU AGAIN FOR EVERYONE. 4056 02:17:55,930 --> 02:17:59,233 THIS WAS THE LAST PRESENTATION. 4057 02:17:59,233 --> 02:18:05,039 SO I'M GOING TO PASS THE MIC TO 4058 02:18:05,039 --> 02:18:05,706 DR. STANLEY ROCKSON FOR OPENING 4059 02:18:05,706 --> 02:18:07,441 THE CLOSING DISCUSSION. 4060 02:18:07,441 --> 02:18:09,410 >> THANK YOU, SELEN. 4061 02:18:09,410 --> 02:18:13,114 I WANT TO SAY A PROFOUND WORD OF 4062 02:18:13,114 --> 02:18:16,650 THANKS, REALLY TO EVERYONE WHO 4063 02:18:16,650 --> 02:18:18,853 HAS CONTRIBUTED THIS MORNING. 4064 02:18:18,853 --> 02:18:20,921 THIS HAS BEEN AN EXTRAORDINARILY 4065 02:18:20,921 --> 02:18:21,722 INSIGHTFUL PROGRAM. 4066 02:18:21,722 --> 02:18:25,192 I'D LOVE TO ACKNOWLEDGE OUR 4067 02:18:25,192 --> 02:18:27,495 HEALTHCARE PROVIDERS, 4068 02:18:27,495 --> 02:18:28,295 CLINICIAN-SCIENTISTS, AND 4069 02:18:28,295 --> 02:18:30,898 SCIENTISTS WHO HAVE PROVIDED 4070 02:18:30,898 --> 02:18:32,399 THEIR INSIGHTS, HAVING DEDICATED 4071 02:18:32,399 --> 02:18:33,934 MUCH OF THEIR PROFESSIONAL LIVES 4072 02:18:33,934 --> 02:18:36,704 TO THIS PATIENT POPULATION, BUT 4073 02:18:36,704 --> 02:18:38,672 AS A CLINICIAN WHO ALSO TAKES 4074 02:18:38,672 --> 02:18:43,344 CARE OF THIS CATEGORY OF PATIENT 4075 02:18:43,344 --> 02:18:44,812 AND THIS BROAD ARRAY OF 4076 02:18:44,812 --> 02:18:46,814 LYMPHATIC CHALLENGES, I 4077 02:18:46,814 --> 02:18:47,715 ESPECIALLY WANT TO COMMEND THE 4078 02:18:47,715 --> 02:18:52,186 FAMILY MEMBERS AND ADVOCATES WHO 4079 02:18:52,186 --> 02:18:53,787 HAVE SPOKEN TO US TODAY. 4080 02:18:53,787 --> 02:18:57,525 YOUR DEDICATION, YOUR UNFAILING 4081 02:18:57,525 --> 02:18:59,527 COURAGE ARE EXTRAORDINARILY 4082 02:18:59,527 --> 02:19:00,427 COMMENDABLE, BUT MOST 4083 02:19:00,427 --> 02:19:02,730 IMPORTANTLY, I HAVE TO SAY, YOUR 4084 02:19:02,730 --> 02:19:05,199 MEDICAL INSIGHTS AND YOUR 4085 02:19:05,199 --> 02:19:10,104 VOCABULARY AND YOUR ABILITY TO 4086 02:19:10,104 --> 02:19:11,639 ADDRESS THE CHALLENGES SO FAR 4087 02:19:11,639 --> 02:19:13,107 OUTSTRIPS MOST OF THE MEDICAL 4088 02:19:13,107 --> 02:19:14,508 COLLEAGUES THAT I INTERACT WITH 4089 02:19:14,508 --> 02:19:15,943 ON A DAY-TO-DAY BASIS. 4090 02:19:15,943 --> 02:19:18,512 I'M TRULY PROFOUNDLY IMPRESSED. 4091 02:19:18,512 --> 02:19:21,582 I'D LIKE TO START ASKING A VERY 4092 02:19:21,582 --> 02:19:23,651 GENERAL QUESTION TO ALL OF OUR 4093 02:19:23,651 --> 02:19:24,451 PARTICIPANTS. 4094 02:19:24,451 --> 02:19:26,854 YOU'VE BEEN VERY GENEROUS IN 4095 02:19:26,854 --> 02:19:31,325 SHARING YOUR WISH LISTS WITH US. 4096 02:19:31,325 --> 02:19:33,227 AT THIS POINT, I'D LOVE TO TAP A 4097 02:19:33,227 --> 02:19:34,895 LITTLE MORE HEAVILY INTO YOUR 4098 02:19:34,895 --> 02:19:38,399 VISION, WHICH IS TO SAY IN YOUR 4099 02:19:38,399 --> 02:19:40,701 WILDEST DREAMS, IF THESE WISH 4100 02:19:40,701 --> 02:19:44,438 LISTS COULD BE ADDRESSED AND 4101 02:19:44,438 --> 02:19:45,105 ACCOMPLISHED, WHAT DO YOU 4102 02:19:45,105 --> 02:19:48,542 IMAGINE ARE THE ROOTS THAT WE AS 4103 02:19:48,542 --> 02:19:51,212 A COMMISSION CAN FOLLOW TO MAKE 4104 02:19:51,212 --> 02:19:52,279 YOUR WISHES COME TRUE? 4105 02:19:52,279 --> 02:19:54,281 HELP US UNDERSTAND HOW YOU 4106 02:19:54,281 --> 02:19:59,987 INVIYOUENVISION THE FUTURE AND E 4107 02:19:59,987 --> 02:20:01,622 CAN DO TO HELP YOU ACCOMPLISH 4108 02:20:01,622 --> 02:20:03,123 WHAT YOU'VE NOT BEEN ABLE TO 4109 02:20:03,123 --> 02:20:03,791 ACCOMPLISH ON YOUR OWN. 4110 02:20:03,791 --> 02:20:05,526 SO I'D LOVE TO HEAR FROM ANYBODY 4111 02:20:05,526 --> 02:20:06,393 WHO'S READY TO ADDRESS THAT 4112 02:20:06,393 --> 02:20:10,297 QUESTION. 4113 02:20:10,297 --> 02:20:11,498 >> I WILL HELP. 4114 02:20:11,498 --> 02:20:12,866 BRITTANY, GO AHEAD. 4115 02:20:12,866 --> 02:20:14,935 >> SO I THINK ONE OF THE THINGS 4116 02:20:14,935 --> 02:20:17,338 THAT WILL REALLY HELP ALL OF US 4117 02:20:17,338 --> 02:20:21,041 IS, AGAIN, WORKING TOGETHER. 4118 02:20:21,041 --> 02:20:24,511 HAVING MORE OF THESE 4119 02:20:24,511 --> 02:20:25,679 CONVERSATIONS, HEARING FROM 4120 02:20:25,679 --> 02:20:27,147 PATIENT ADVOCATES, HEARING FROM 4121 02:20:27,147 --> 02:20:30,217 PARENTS THAT ARE IN THE DAY TO 4122 02:20:30,217 --> 02:20:30,818 DAY STRUGGLES. 4123 02:20:30,818 --> 02:20:32,553 JUST IN THE COMMUNITY THAT WE'VE 4124 02:20:32,553 --> 02:20:33,754 BUILT THROUGH BRYLAN'S FEAT 4125 02:20:33,754 --> 02:20:34,521 FOUNDATION, I HAVE LEARNED SO 4126 02:20:34,521 --> 02:20:36,523 MUCH JUST FROM HEARING FROM 4127 02:20:36,523 --> 02:20:38,392 OTHER PARENTS, HEARING ABOUT THE 4128 02:20:38,392 --> 02:20:41,228 STRUGGLES, THE TRIUMPHS, SEEING 4129 02:20:41,228 --> 02:20:43,330 WHAT HAS WORKED AS EACH CHILD IS 4130 02:20:43,330 --> 02:20:46,100 A LITTLE BIT DIFFERENT. 4131 02:20:46,100 --> 02:20:50,371 AND JUST, AGAIN, COLLABORATION, 4132 02:20:50,371 --> 02:20:50,771 WORKING TOGETHER. 4133 02:20:50,771 --> 02:20:54,541 THERE IS NO REASON WHY WE ARE, 4134 02:20:54,541 --> 02:20:56,610 EVEN AS NON-PROFITS OR OTHER 4135 02:20:56,610 --> 02:20:57,945 ORGANIZATIONS AND NETWORKS, THAT 4136 02:20:57,945 --> 02:20:59,380 WE'RE NOT COMBINING OUR EFFORTS 4137 02:20:59,380 --> 02:21:00,648 AND MOVING FORWARD FOR THIS 4138 02:21:00,648 --> 02:21:04,585 PATIENT POPULATION. 4139 02:21:04,585 --> 02:21:06,553 >> THANK YOU, BRITTANY. 4140 02:21:06,553 --> 02:21:09,089 JEN AND KEVIN? 4141 02:21:09,089 --> 02:21:10,791 >> YEAH, I THINK IF THERE COULD 4142 02:21:10,791 --> 02:21:12,092 BE ONE THING THAT I WOULD REALLY 4143 02:21:12,092 --> 02:21:13,727 ASK THE COMMISSION TO MOVE 4144 02:21:13,727 --> 02:21:18,666 FORWARD ON, IT WOULD START WITH 4145 02:21:18,666 --> 02:21:20,634 EDUCATION AT THE MEDICAL SCHOOL 4146 02:21:20,634 --> 02:21:25,139 LEVEL, AND EDUCATION ON LIX 4147 02:21:25,139 --> 02:21:27,207 LYMPHATICS, POSSIBLY AS A 4148 02:21:27,207 --> 02:21:27,841 SEPARATE DISCIPLINE WITHIN THE 4149 02:21:27,841 --> 02:21:28,309 MEDICAL COMMUNITY. 4150 02:21:28,309 --> 02:21:29,677 THE FACT THAT WE'RE ALWAYS UNDER 4151 02:21:29,677 --> 02:21:30,978 THE UMBRELLA OF OTHER DISEASES 4152 02:21:30,978 --> 02:21:34,014 WHICH ARE ALWAYS GOING TO TAKE I 4153 02:21:34,014 --> 02:21:38,352 THINK MORE IMPORTANCE RELATIVEY 4154 02:21:38,352 --> 02:21:40,220 IN THE DEPARTMENTS THAT THEY'RE 4155 02:21:40,220 --> 02:21:41,455 UNDER, THE LYMPHATICS ARE ALWAYS 4156 02:21:41,455 --> 02:21:42,589 PUT TO THE SIDE AND WE ARE NOT 4157 02:21:42,589 --> 02:21:43,924 EABL TO BE HEARD IN PART BECAUSE 4158 02:21:43,924 --> 02:21:45,392 NO ONE REALLY CARES OR KNOWS. 4159 02:21:45,392 --> 02:21:48,662 SO IT'S JUST SOMETHING WHERE 4160 02:21:48,662 --> 02:21:51,398 UNLESS THAT IS PRIORITIZED AT 4161 02:21:51,398 --> 02:21:53,901 SOME POINT AT A MORE NATIONAL 4162 02:21:53,901 --> 02:21:55,202 LEVEL OR INTERNATIONAL LEVEL BUT 4163 02:21:55,202 --> 02:21:56,670 MORE IMPORTANTLY JUST WITHIN THE 4164 02:21:56,670 --> 02:21:58,639 MEDICAL DISCIPLINE ITSELF, I 4165 02:21:58,639 --> 02:21:59,606 DON'T THINK THINGS WILL REALLY 4166 02:21:59,606 --> 02:22:01,742 BE CHANGED THAT MUCH. 4167 02:22:01,742 --> 02:22:02,976 BECAUSE UNFORTUNATELY, JUST 4168 02:22:02,976 --> 02:22:04,712 BASED ON THE NUMBERS, WE'RE JUST 4169 02:22:04,712 --> 02:22:07,081 NOT THE SAME AS OTHER DISEASES. 4170 02:22:07,081 --> 02:22:11,151 AND OTHER DISEASE GROUPS. 4171 02:22:11,151 --> 02:22:12,252 FROM THAT STANDPOINT, THAT WOULD 4172 02:22:12,252 --> 02:22:13,721 BE MY GREATEST CONCERN. 4173 02:22:13,721 --> 02:22:14,154 THANK YOU. 4174 02:22:14,154 --> 02:22:15,389 >> THANK YOU. 4175 02:22:15,389 --> 02:22:16,323 DENISE, I THINK YOU HAD YOUR 4176 02:22:16,323 --> 02:22:16,924 HAND UP. 4177 02:22:16,924 --> 02:22:19,360 >> YEAH, I TOTALLY AGREE WITH 4178 02:22:19,360 --> 02:22:19,560 THAT. 4179 02:22:19,560 --> 02:22:20,861 BUT I THINK IT NEEDS TO BE MORE 4180 02:22:20,861 --> 02:22:22,262 THAN JUST MEDICAL STUDENTS. 4181 02:22:22,262 --> 02:22:23,897 I MEAN, I THINK YOU NEED TO GO 4182 02:22:23,897 --> 02:22:25,399 TO THE NURSING SCHOOLS. 4183 02:22:25,399 --> 02:22:27,167 I THINK YOU NEED TO GO TO THE 4184 02:22:27,167 --> 02:22:29,837 GRADUATE PROGRAMS, THE PH.D. 4185 02:22:29,837 --> 02:22:31,271 PROGRAMS, BECAUSE YOU HAVE TO 4186 02:22:31,271 --> 02:22:38,712 GET PEOPLE EXCITED AND INVOLVED. 4187 02:22:38,712 --> 02:22:44,118 WE HERE AT PENN STARTED A RARE 4188 02:22:44,118 --> 02:22:45,319 DISEASE ELECTIVE. 4189 02:22:45,319 --> 02:22:46,453 IT'S BEEN HARD MOVING IT FORWARD 4190 02:22:46,453 --> 02:22:48,455 BECAUSE IT'S JUST MYSELF AS 4191 02:22:48,455 --> 02:22:49,623 THEIR ADVISOR AND MEDICAL 4192 02:22:49,623 --> 02:22:51,191 STUDENTS, AND WE HAVE A COUPLE 4193 02:22:51,191 --> 02:22:53,227 OF THOUSAND DOLLARS THAT WE HAVE 4194 02:22:53,227 --> 02:22:55,095 WHEN THEY'RE HAVING LECTURES TO 4195 02:22:55,095 --> 02:22:56,363 GET PIZZA SO PEOPLE CAN COME, 4196 02:22:56,363 --> 02:22:57,798 AND WE'VE INNERVATED THE NURSING 4197 02:22:57,798 --> 02:22:59,066 SCHOOL AND THINGS LIKE THAT, BUT 4198 02:22:59,066 --> 02:23:00,134 I THINK WE HAVE TO GO TO THE 4199 02:23:00,134 --> 02:23:01,635 DEANS AND WE HAVE TO GO TO OTHER 4200 02:23:01,635 --> 02:23:04,838 PEOPLE, BUT WE HAVE TO DO ALL OF 4201 02:23:04,838 --> 02:23:05,706 HEALTHCARE, BECAUSE YOU KNOW, 4202 02:23:05,706 --> 02:23:07,608 WE'RE HAVING MORE NURSE 4203 02:23:07,608 --> 02:23:09,309 PRACTITIONERS WORK WITH US. 4204 02:23:09,309 --> 02:23:10,511 WE'RE HAVING OTHER PEOPLE WORK 4205 02:23:10,511 --> 02:23:11,512 WITH US. 4206 02:23:11,512 --> 02:23:13,714 AND I THINK IT NEEDS TO BE 4207 02:23:13,714 --> 02:23:15,015 THROUGHOUT HEALTHCARE. 4208 02:23:15,015 --> 02:23:18,118 >> DENISE, JUST A FOLLOW-UP 4209 02:23:18,118 --> 02:23:19,219 QUESTION. 4210 02:23:19,219 --> 02:23:21,522 AS A COMMISSION, WE HAVE 4211 02:23:21,522 --> 02:23:22,923 CONVENED SEVERAL ORGANIZATIONS 4212 02:23:22,923 --> 02:23:25,426 TO ADDRESS THIS EDUCATION 4213 02:23:25,426 --> 02:23:25,692 QUESTION. 4214 02:23:25,692 --> 02:23:28,061 WE HAVE HAD THE ASSOCIATION OF 4215 02:23:28,061 --> 02:23:28,662 AMERICAN MEDICAL COLLEGE, WE 4216 02:23:28,662 --> 02:23:31,064 HAVE REACHED OUT TO SEVERAL OF 4217 02:23:31,064 --> 02:23:32,900 THE SPECIALTY GROUPS LIKE THE 4218 02:23:32,900 --> 02:23:34,067 AMERICAN ACADEMY OF PEDIATRICS, 4219 02:23:34,067 --> 02:23:37,337 AMERICAN ACAMERICAN ACADEMY OF Y 4220 02:23:37,337 --> 02:23:38,405 PRACTICE, AMERICAN COLLEGE OF 4221 02:23:38,405 --> 02:23:39,506 SURGEONS, ET CETERA. 4222 02:23:39,506 --> 02:23:42,743 ANY IDEAS ABOUT ADDITIONAL 4223 02:23:42,743 --> 02:23:46,113 RESOURCES OR CONTACTS WHERE WE 4224 02:23:46,113 --> 02:23:48,982 CAN BEGIN TO KINDLE THIS OR AT 4225 02:23:48,982 --> 02:23:49,983 LEAST GATHER INFORMATION ABOUT 4226 02:23:49,983 --> 02:23:52,052 WHAT THE PATH IS TO RECTIFY SOME 4227 02:23:52,052 --> 02:23:53,654 OF THE INEQUITIES THAT WE'RE 4228 02:23:53,654 --> 02:23:58,892 TALKING ABOUT? 4229 02:23:58,892 --> 02:24:01,628 >> SO I WOULD ALSO GO TO ASH, 4230 02:24:01,628 --> 02:24:03,230 THE AMERICAN SOCIETY OF 4231 02:24:03,230 --> 02:24:03,530 HEMATOLOGY. 4232 02:24:03,530 --> 02:24:08,135 I WOULD GO TO THE AMERICAN 4233 02:24:08,135 --> 02:24:10,838 SOCIETY OF PEDIATRIC KEMONK 4234 02:24:10,838 --> 02:24:13,373 BECAUSE WE ACTUALLY HAVE -- AND 4235 02:24:13,373 --> 02:24:15,075 AGAIN, VASCULAR ANOMALIES, I 4236 02:24:15,075 --> 02:24:16,210 THINK YOU HAVE TO INCLUDE 4237 02:24:16,210 --> 02:24:17,578 VASCULAR ANOMALIES BECAUSE, YES, 4238 02:24:17,578 --> 02:24:19,480 YOU HAVE YOUR ISOLATED LYMPHATIC 4239 02:24:19,480 --> 02:24:20,914 DISORDERS, BUT YOU ALSO HAVE 4240 02:24:20,914 --> 02:24:23,750 THESE DISORDERS THAT HAVE A 4241 02:24:23,750 --> 02:24:25,285 LYMPHATIC COMPONENT TO THEM, 4242 02:24:25,285 --> 02:24:28,322 WHICH IS A BIG COMPONENT. 4243 02:24:28,322 --> 02:24:31,825 BUT WE HAVE VASCULAR ANOMALIES 4244 02:24:31,825 --> 02:24:35,662 IN OUR BOARDS NOW FOR PEDIATRIC 4245 02:24:35,662 --> 02:24:36,563 HEMONC. 4246 02:24:36,563 --> 02:24:37,464 WE OVER THE YEARS HAVE REALLY 4247 02:24:37,464 --> 02:24:39,166 PUSHED TO HAVE THAT BE A HOME 4248 02:24:39,166 --> 02:24:42,703 FOR PEOPLE WITH VASCULAR 4249 02:24:42,703 --> 02:24:44,171 ANOMALIES, SO WE'RE TRYING TO 4250 02:24:44,171 --> 02:24:45,272 INFILTRATE INTO ASH FOR THE 4251 02:24:45,272 --> 02:24:49,176 OLDER PATIENTS AS WELL. 4252 02:24:49,176 --> 02:24:51,011 I WOULD ALSO GO TO THE DEANS OF 4253 02:24:51,011 --> 02:24:52,779 THE MEDICAL SCHOOLS, AND YOU 4254 02:24:52,779 --> 02:24:54,248 KNOW, THE DEANS OF EDUCATION. 4255 02:24:54,248 --> 02:24:57,451 I MEAN, YOU HAVE T TO INFILTRATE 4256 02:24:57,451 --> 02:25:02,322 IN THATTER AS THAT AREAS AS WEE 4257 02:25:02,322 --> 02:25:03,323 NURSING SCHOOLS. 4258 02:25:03,323 --> 02:25:04,858 WHEN WE FIRST STARTED THIS 4259 02:25:04,858 --> 02:25:06,860 ELECTIVE, THE DEAN WAS REALLY 4260 02:25:06,860 --> 02:25:07,895 UNCERTAIN OF HOW IT WOULD GO, 4261 02:25:07,895 --> 02:25:09,496 AND IT'S REALLY BEEN A VERY 4262 02:25:09,496 --> 02:25:11,665 POPULAR ELECTIVE THAT THEY 4263 02:25:11,665 --> 02:25:14,201 ACTUALLY NOW CAN HAVE COURSE 4264 02:25:14,201 --> 02:25:15,569 CREDIT FOR IT, WHICH HE NEVER 4265 02:25:15,569 --> 02:25:17,170 EXPECTED WOULD EVER HAPPEN. 4266 02:25:17,170 --> 02:25:19,907 SO I THINK POOLING THOSE PEOPLE 4267 02:25:19,907 --> 02:25:22,009 AS WELL IS VERY, VERY IMPORTANT, 4268 02:25:22,009 --> 02:25:24,778 AND AGAIN, PAs, NPs, ALL OF 4269 02:25:24,778 --> 02:25:25,779 THE PEOPLE THAT ARE GOING TO 4270 02:25:25,779 --> 02:25:29,116 TAKE CARE OF THESE PATIENTS. 4271 02:25:29,116 --> 02:25:29,850 >> THANK YOU. 4272 02:25:29,850 --> 02:25:32,152 THOSE ARE GREAT SUGGESTIONS 4273 02:25:32,152 --> 02:25:33,487 WHICH WE WILL IMPLEMENT IN OUR 4274 02:25:33,487 --> 02:25:33,720 REPORT. 4275 02:25:33,720 --> 02:25:36,657 >> STAN, I CAN SEE SOME OF YOU 4276 02:25:36,657 --> 02:25:38,392 RAISING HANDS. 4277 02:25:38,392 --> 02:25:39,793 KAREN ALSO TEXTED ME THAT SHE 4278 02:25:39,793 --> 02:25:42,596 CANNOT RAISE HER HAND, JUST TO 4279 02:25:42,596 --> 02:25:43,463 LET YOU KNOW. 4280 02:25:43,463 --> 02:25:43,830 KAREN? 4281 02:25:43,830 --> 02:25:45,332 >> SELEN, I'M GOING TO ASK YOU 4282 02:25:45,332 --> 02:25:46,199 TO POINT TO PEOPLE BECAUSE IT'S 4283 02:25:46,199 --> 02:25:47,568 HARD FOR ME TO SEE. 4284 02:25:47,568 --> 02:25:48,702 >> YES, NO PROBLEM. 4285 02:25:48,702 --> 02:25:50,704 KAREN, IF YOU CAN SPEAK NOW, 4286 02:25:50,704 --> 02:25:51,838 PLEASE DO. 4287 02:25:51,838 --> 02:25:52,039 OKAY. 4288 02:25:52,039 --> 02:25:53,140 >> THANK YOU. 4289 02:25:53,140 --> 02:25:54,241 YEAH, I DIDN'T SEE THE LITTLE 4290 02:25:54,241 --> 02:25:54,708 ICON. 4291 02:25:54,708 --> 02:25:55,943 I'M SURE IT WAS THERE. 4292 02:25:55,943 --> 02:25:57,110 >> NO PROBLEM. 4293 02:25:57,110 --> 02:25:59,780 >> THANK YOU. 4294 02:25:59,780 --> 02:26:02,015 I THINK THOSE ARE REALLY GOOD 4295 02:26:02,015 --> 02:26:02,649 POINTS. 4296 02:26:02,649 --> 02:26:06,553 AND AND ONE ONE OF THE THINGS IS 4297 02:26:06,553 --> 02:26:07,854 THINKING ABOUT WAS TO GET A MIX 4298 02:26:07,854 --> 02:26:09,723 OF PEOPLE TOGETHER TO ACTUALLY 4299 02:26:09,723 --> 02:26:11,758 WRITE CURRICULUM OR MODULES THAT 4300 02:26:11,758 --> 02:26:15,228 WE COULD DISTRIBUTE TO THE 4301 02:26:15,228 --> 02:26:16,930 ACADEMIES, THE SCHOOLS, THE 4302 02:26:16,930 --> 02:26:21,268 NURSES, SCHOOL NURSES, ET 4303 02:26:21,268 --> 02:26:23,070 CETERA, AND ON THE THINGS THAT 4304 02:26:23,070 --> 02:26:23,704 DO IMPACT. 4305 02:26:23,704 --> 02:26:26,306 THE MEDICAL PART, THE RESEARCH 4306 02:26:26,306 --> 02:26:27,240 PART, THE FINANCIAL BURDEN ON 4307 02:26:27,240 --> 02:26:28,709 THE FAMILY, WAYS TO ADDRESS IT, 4308 02:26:28,709 --> 02:26:29,443 THAT TYPE OF THING. 4309 02:26:29,443 --> 02:26:31,078 BUT THE OTHER THING THAT I FOUND 4310 02:26:31,078 --> 02:26:35,115 REALLY FASCINATING ABOUT TODAY'S 4311 02:26:35,115 --> 02:26:37,517 MEETING IS HOW MANY SIMILARITIES 4312 02:26:37,517 --> 02:26:42,923 ARE THERE, AND THEN TO DO, IF WE 4313 02:26:42,923 --> 02:26:44,558 COULD, CONVENE RESEARCHERS 4314 02:26:44,558 --> 02:26:48,195 AND/OR CLINICIANS FROM ALL OF 4315 02:26:48,195 --> 02:26:50,597 THESE SYNDROMES OR DISEASES, 4316 02:26:50,597 --> 02:26:52,299 BRING THEM TOGETHER AND LET THEM 4317 02:26:52,299 --> 02:26:53,734 JUST SORT OF BRAINSTORM WHAT 4318 02:26:53,734 --> 02:26:55,669 THEIR GAPS ARE AND THEIR 4319 02:26:55,669 --> 02:26:57,704 CHALLENGES ARE, BECAUSE I'VE 4320 02:26:57,704 --> 02:27:00,707 LEARNED SO MUCH FROM THE OTHER 4321 02:27:00,707 --> 02:27:02,309 ORGANIZATIONS THAT I'M GOING TO 4322 02:27:02,309 --> 02:27:05,278 BRING BACK TO OUR FOLKS AND SO I 4323 02:27:05,278 --> 02:27:06,780 DON'T KNOW IF WE CAN DO THAT, 4324 02:27:06,780 --> 02:27:08,181 BUT I THINK THAT WOULD BE REALLY 4325 02:27:08,181 --> 02:27:08,782 HELPFUL TOO. 4326 02:27:08,782 --> 02:27:12,819 AND THEN MAYBE EVEN GET FUNDING 4327 02:27:12,819 --> 02:27:16,790 FOR AN AWARD AT THE NIH LEVEL 4328 02:27:16,790 --> 02:27:19,660 THAT WOULD PROMOTE THESE TYPES 4329 02:27:19,660 --> 02:27:23,730 OF CROSS-SECTIONAL AND 4330 02:27:23,730 --> 02:27:24,665 TRANSLATIONAL, YOU KNOW, 4331 02:27:24,665 --> 02:27:25,666 MECHANISMS. 4332 02:27:25,666 --> 02:27:28,335 >> THANK YOU, KAREN. 4333 02:27:28,335 --> 02:27:28,935 LINDSAY, WELCOME. 4334 02:27:28,935 --> 02:27:30,737 WE MISSED YOU. 4335 02:27:30,737 --> 02:27:33,740 THANK YOU SO MUCH FOR JOINING 4336 02:27:33,740 --> 02:27:33,974 US. 4337 02:27:33,974 --> 02:27:34,941 WE WOULD LIKE TO HEAR WHAT YOU 4338 02:27:34,941 --> 02:27:36,243 WANT TO SAY NOW. 4339 02:27:36,243 --> 02:27:37,544 AND IF YOU WANT TO ADD A COUPLE 4340 02:27:37,544 --> 02:27:42,315 OF POINTERS, YOU WANTED TO ADD. 4341 02:27:42,315 --> 02:27:43,150 >> THANK YOU. 4342 02:27:43,150 --> 02:27:44,885 YEAH, SO THIS MORNING, I 4343 02:27:44,885 --> 02:27:47,320 ACTUALLY MISSED THE FIRST HOUR 4344 02:27:47,320 --> 02:27:50,424 OF THE SESSION BECAUSE I WAS AT 4345 02:27:50,424 --> 02:27:52,292 A LYMPHADEMA THERAPY APPOINTMENT 4346 02:27:52,292 --> 02:27:53,527 LOOKING AT A LIMB THAT'S ON THE 4347 02:27:53,527 --> 02:27:57,531 VERGE OF CELLULITIS, AND AS 4348 02:27:57,531 --> 02:27:59,466 DR. ADAMS IN PARTICULAR WAS 4349 02:27:59,466 --> 02:28:02,002 ADDRESSING THIS QUESTION, I WAS 4350 02:28:02,002 --> 02:28:04,404 THINKING ABOUT INFECTIOUS 4351 02:28:04,404 --> 02:28:05,906 DISEASE PHYSICIANS AND HOW 4352 02:28:05,906 --> 02:28:07,874 THAT'S A PARTICULAR GROUP THAT 4353 02:28:07,874 --> 02:28:13,146 REALLY NEEDS FURTHER EDUCATION 4354 02:28:13,146 --> 02:28:15,582 ON LYMPHADEMA AND CELLULITIS. 4355 02:28:15,582 --> 02:28:18,118 I HAVE A WONDERFUL INFECTIOUS 4356 02:28:18,118 --> 02:28:19,119 DISEASE DOCTOR WHO HAS LEARNED A 4357 02:28:19,119 --> 02:28:22,089 LOT ABOUT MY CLOVES SYNDROME AND 4358 02:28:22,089 --> 02:28:24,558 MY LYMPHADEMA AND HOW MY 4359 02:28:24,558 --> 02:28:25,959 CELLULITIS BEHAVES WHEN IT 4360 02:28:25,959 --> 02:28:27,160 HAPPENS BECAUSE I HAVE 4361 02:28:27,160 --> 02:28:28,428 CELLULITIS INFECTIONS A COUPLE 4362 02:28:28,428 --> 02:28:29,863 TIMES A YEAR. 4363 02:28:29,863 --> 02:28:31,098 EVERY INFECTION PUTS ME IN THE 4364 02:28:31,098 --> 02:28:32,499 HOSPITAL FOR AT LEAST A WEEK 4365 02:28:32,499 --> 02:28:38,038 BECAUSE OF MY -- RISK AND I'VE 4366 02:28:38,038 --> 02:28:39,639 HAD TO HAVE FASCIOTOMIES BECAUSE 4367 02:28:39,639 --> 02:28:41,875 OF COMPARTMENT SYNDROME, SO 4368 02:28:41,875 --> 02:28:43,410 EVERY HOSPITALIZATION IS A 4369 02:28:43,410 --> 02:28:44,377 SIGNIFICANT AMOUNT OF TIME OUT 4370 02:28:44,377 --> 02:28:47,013 OF MY LIFE THAT I'M SPENDING IN 4371 02:28:47,013 --> 02:28:50,417 THE HOSPITAL, AND I'VE HAD 4372 02:28:50,417 --> 02:28:52,819 INFECTIOUS DISEASE DOCTORS IN 4373 02:28:52,819 --> 02:28:54,221 THE HOSPITAL NOT BELIEVE THAT I 4374 02:28:54,221 --> 02:28:56,923 AM HAVING A CELLULITIS INFECTION 4375 02:28:56,923 --> 02:28:59,493 BECAUSE MY CLOVES SYNDROME 4376 02:28:59,493 --> 02:29:02,696 BEHAVES DIFFERENTLY WHEN IT HAS 4377 02:29:02,696 --> 02:29:04,264 CELLULITIS THAN A TYPICAL 4378 02:29:04,264 --> 02:29:04,998 CELLULITIS PATIENT. 4379 02:29:04,998 --> 02:29:06,700 MY LIMBS ALWAYS LOOK DIFFERENT 4380 02:29:06,700 --> 02:29:09,136 THAN WHAT THEY WOULD EXPECT A 4381 02:29:09,136 --> 02:29:11,671 CELLULITIS LIMB TO LOOK LIKE, 4382 02:29:11,671 --> 02:29:12,806 AND SO I'VE HAD INFECTIONS IN 4383 02:29:12,806 --> 02:29:15,308 THE LAST COUPLE OF YEARS WHERE 4384 02:29:15,308 --> 02:29:16,343 INFECTIOUS DISEASE DOCTORS HAVE 4385 02:29:16,343 --> 02:29:18,812 CHANGED UP THE ANTIBIOTIC 4386 02:29:18,812 --> 02:29:19,946 REGIMEN, NOT BELIEVING I'M 4387 02:29:19,946 --> 02:29:22,949 HAVING CELLULITIS, WHICH THEN 4388 02:29:22,949 --> 02:29:25,218 ENDS UP WORSENING THE INFECTION 4389 02:29:25,218 --> 02:29:26,987 AND I SPEND ANOTHER WEEK IN THE 4390 02:29:26,987 --> 02:29:27,254 HOSPITAL. 4391 02:29:27,254 --> 02:29:29,322 AND SO I THINK INFECTIOUS 4392 02:29:29,322 --> 02:29:31,591 DISEASE IN PARTICULAR WOULD 4393 02:29:31,591 --> 02:29:33,627 REALLY BENEFIT FROM FURTHER 4394 02:29:33,627 --> 02:29:35,762 EDUCATION ON WHAT CELLULITIS CAN 4395 02:29:35,762 --> 02:29:38,765 LOOK LIKE IN PATIENTS WITH 4396 02:29:38,765 --> 02:29:40,801 LYMPHADEMA AND OVERGROWTH 4397 02:29:40,801 --> 02:29:42,803 DISEASES IN PARTICULAR, BECAUSE 4398 02:29:42,803 --> 02:29:47,040 OUR ANATOMY IN PARTICULAR OUR 4399 02:29:47,040 --> 02:29:48,041 SKIN DOESN'T BEHAVE IN THE SAME 4400 02:29:48,041 --> 02:29:49,709 WAY WITH CELLULITIS INFECTIONS 4401 02:29:49,709 --> 02:29:53,980 AS WHAT THEY ARE TAUGHT A 4402 02:29:53,980 --> 02:29:55,782 CELLULITIS INFECTION WILL BEHAVE 4403 02:29:55,782 --> 02:29:56,183 LIKE. 4404 02:29:56,183 --> 02:29:57,784 SO THAT'S ONE THING I WOULD LOVE 4405 02:29:57,784 --> 02:30:00,220 TO SEE, IS FURTHER EDUCATION FOR 4406 02:30:00,220 --> 02:30:07,828 INFECTIOUS DISEASE PHYSICIANS. 4407 02:30:07,828 --> 02:30:08,962 >> THANK YOU. 4408 02:30:08,962 --> 02:30:09,229 GRETCHEN? 4409 02:30:09,229 --> 02:30:11,731 >> I THINK ONE THING FROM A 4410 02:30:11,731 --> 02:30:12,399 PARENT'S PERSPECTIVE TO KEEP IN 4411 02:30:12,399 --> 02:30:14,434 MIND IS, AS YOU'RE DOING THESE 4412 02:30:14,434 --> 02:30:16,503 EDUCATION AND BUILDING UP THESE 4413 02:30:16,503 --> 02:30:17,904 HUBS, IS THAT IT'S NOT ACTUALLY 4414 02:30:17,904 --> 02:30:19,906 THAT EASY TO GET YOUR KIDS INTO 4415 02:30:19,906 --> 02:30:20,540 THESE HUBS. 4416 02:30:20,540 --> 02:30:23,476 SO UNLESS YOUR KID IS ON THE 4417 02:30:23,476 --> 02:30:26,513 VERGE OF PASSING AWAY, YOU 4418 02:30:26,513 --> 02:30:29,349 ACTUALLY CAN'T GET IN, AN SO AS 4419 02:30:29,349 --> 02:30:30,917 YOU'RE BUILDING THESE PROGRAMS 4420 02:30:30,917 --> 02:30:33,086 UP, YOU NEED TO MAKE SURE YOU 4421 02:30:33,086 --> 02:30:34,487 CAN SUPPORT THEM OR IT'S REALLY 4422 02:30:34,487 --> 02:30:37,224 NOT THAT VALUABLE TO DO SO. 4423 02:30:37,224 --> 02:30:39,326 IF YOU CAN'T GET YOUR CHILD IN 4424 02:30:39,326 --> 02:30:41,528 OR AN ADULT IN OR WHATEVER, IT'S 4425 02:30:41,528 --> 02:30:44,030 REALLY NOT THAT GREAT TO HAVE 4426 02:30:44,030 --> 02:30:45,432 THESE PROGRAMS THERE IF YOU 4427 02:30:45,432 --> 02:30:47,133 CAN'T SUPPORT THEM. 4428 02:30:47,133 --> 02:30:49,469 >> THOUSAND. 4429 02:30:49,469 --> 02:30:50,370 THANK YOU. 4430 02:30:50,370 --> 02:30:53,473 MELLENNEE? 4431 02:30:53,473 --> 02:30:55,709 YOU HAVE TO UNMUTE YOURSELF. 4432 02:30:55,709 --> 02:30:58,011 IT'S AT THE BOTTOM LEFT CORNER. 4433 02:30:58,011 --> 02:30:59,279 >> THERE WE GO. 4434 02:30:59,279 --> 02:31:00,647 MY SCREEN JUST FOLDED ABOUT THE 4435 02:31:00,647 --> 02:31:02,515 TIME THAT I DID THAT. 4436 02:31:02,515 --> 02:31:05,252 I'D LIKE TO GO BACK A LITTLE 4437 02:31:05,252 --> 02:31:08,488 BIT, IN ADDITION TO THE COLLEGES 4438 02:31:08,488 --> 02:31:09,556 AND UNIVERSITIES AND MEDICAL 4439 02:31:09,556 --> 02:31:10,891 SCHOOLS, I THINK WE SHOULD ALSO 4440 02:31:10,891 --> 02:31:16,997 INCLUDE THE PEOPLE THAT TRAIN ER 4441 02:31:16,997 --> 02:31:18,565 EMERGENCY TECHNICIANS, PEOPLE 4442 02:31:18,565 --> 02:31:19,900 THAT RESPOND, AMBULANCE SYSTEMS 4443 02:31:19,900 --> 02:31:20,934 AND PEOPLE IN THE EMERGENCY 4444 02:31:20,934 --> 02:31:23,904 ROOMS IN GENERAL, BECAUSE THAT 4445 02:31:23,904 --> 02:31:27,841 IS A BIG RISK TO A LOT OF THESE 4446 02:31:27,841 --> 02:31:28,575 PEOPLE. 4447 02:31:28,575 --> 02:31:30,010 I ALSO THINK THAT WE NEED TO 4448 02:31:30,010 --> 02:31:33,546 ADDRESS A LITTLE BIT ABOUT THE 4449 02:31:33,546 --> 02:31:34,781 ADMINISTRATORS OF THE HOSPITALS 4450 02:31:34,781 --> 02:31:37,217 THAT ARE A LITTLE BIT RESISTANT 4451 02:31:37,217 --> 02:31:40,120 TO GO TOWARD OUR SYNDROMES 4452 02:31:40,120 --> 02:31:42,389 BECAUSE WE ARE -- MOST OF US ARE 4453 02:31:42,389 --> 02:31:46,359 RARE AND WE'RE ALSO MESSY AND 4454 02:31:46,359 --> 02:31:47,527 COMPLEX. 4455 02:31:47,527 --> 02:31:50,030 I THINK IT WOULD HELP IF THE 4456 02:31:50,030 --> 02:31:51,431 NHLBI AND THE NATIONAL 4457 02:31:51,431 --> 02:31:51,965 INSTITUTES OF HEALTH WOULD 4458 02:31:51,965 --> 02:31:53,733 RECOGNIZE THAT THESE ARE RARELY 4459 02:31:53,733 --> 02:31:54,634 STANDALONE CONDITIONS. 4460 02:31:54,634 --> 02:31:57,804 THAT ONCE YOU HAVE LYMPHATIC 4461 02:31:57,804 --> 02:31:58,805 INVOLVEMENT, IT JUST REACHES OUT 4462 02:31:58,805 --> 02:32:01,775 AND TOUCHES EVERYTHING. 4463 02:32:01,775 --> 02:32:07,180 SO THE INDIVIDUAL FOCUS ON ONE 4464 02:32:07,180 --> 02:32:09,449 SYMPTOM IS A LITTLE FRUSTRATING. 4465 02:32:09,449 --> 02:32:11,918 I THINK MY FIRST NIH MEETING AND 4466 02:32:11,918 --> 02:32:13,520 THE OTHER PEOPLE HERE AROUND MY 4467 02:32:13,520 --> 02:32:14,955 AGE, AROUND 29, THAT HAVE ALSO 4468 02:32:14,955 --> 02:32:17,257 BEEN TO THOSE MEETINGS IN THE 4469 02:32:17,257 --> 02:32:19,526 90s, AND WE TALKED ABOUT THIS 4470 02:32:19,526 --> 02:32:20,827 THEN, AND WE'RE STILL TALKING 4471 02:32:20,827 --> 02:32:22,028 ABOUT IT NOW. 4472 02:32:22,028 --> 02:32:24,464 I THINK WE DO A REALLY GOOD JOB 4473 02:32:24,464 --> 02:32:26,833 OF COMMUNICATING AND TRYING TO 4474 02:32:26,833 --> 02:32:27,167 WORK TOGETHER. 4475 02:32:27,167 --> 02:32:28,902 WE'RE ALL WILLING TO DO THINGS. 4476 02:32:28,902 --> 02:32:31,972 WE JUST NEED THE PERMISSION AND 4477 02:32:31,972 --> 02:32:32,973 SOMEBODY STRONG ENOUGH TO 4478 02:32:32,973 --> 02:32:34,407 REPRESENT US TO CARRY US THROUGH 4479 02:32:34,407 --> 02:32:35,342 ON THESE ISSUES. 4480 02:32:35,342 --> 02:32:36,309 SO I THANK YOU FOR THAT 4481 02:32:36,309 --> 02:32:38,345 OPPORTUNITY. 4482 02:32:38,345 --> 02:32:38,678 >> THANK YOU. 4483 02:32:38,678 --> 02:32:42,615 THANK YOU VERY MUCH. 4484 02:32:42,615 --> 02:32:42,816 ANIL? 4485 02:32:42,816 --> 02:32:44,484 >> SO I WOULD PROBABLY TAKE MORE 4486 02:32:44,484 --> 02:32:46,119 OF A STICK APPROACH RATHER THAN 4487 02:32:46,119 --> 02:32:48,588 THE CARROT APPROACH. 4488 02:32:48,588 --> 02:32:51,024 FOR MEDICAL EDUCATION, PART OF 4489 02:32:51,024 --> 02:32:53,893 THE REASON WHY CURRICULA 4490 02:32:53,893 --> 02:32:58,365 CHANGES, IF THE EXAM CHANGES, 4491 02:32:58,365 --> 02:33:00,200 RESIDENCIES, FELLOWSHIPS, 4492 02:33:00,200 --> 02:33:02,102 POSTGRADUATE EDUCATION, I WOULD 4493 02:33:02,102 --> 02:33:03,336 PROBABLY SAY THE BOARDS THAT 4494 02:33:03,336 --> 02:33:04,904 ACTUALLY WRITE THE EXAMS ALSO 4495 02:33:04,904 --> 02:33:07,607 NEED TO BE ADDRESSED, BECAUSE IF 4496 02:33:07,607 --> 02:33:09,442 IT'S ON YOUR EXAM AND YOU'RE NOT 4497 02:33:09,442 --> 02:33:10,310 GOING TO PASS YOUR EXAM BECAUSE 4498 02:33:10,310 --> 02:33:14,614 YOU DON'T KNOW THE INFORMATION, 4499 02:33:14,614 --> 02:33:16,216 OR RECOGNIZE OR THE SELL LIGHT 4500 02:33:16,216 --> 02:33:17,851 OR THE LYMPHADEMA OR THE 4501 02:33:17,851 --> 02:33:18,718 LYMPHATIC PROCESS, THEN THEY'RE 4502 02:33:18,718 --> 02:33:20,153 NOT GOING TO LEARN IT. 4503 02:33:20,153 --> 02:33:21,654 >> THANK YOU. 4504 02:33:21,654 --> 02:33:23,223 NOW BETTY? 4505 02:33:23,223 --> 02:33:25,959 >> GREAT TIMING, BECAUSE THIS 4506 02:33:25,959 --> 02:33:26,993 ACTUALLY PIGGY BACKS ON WHAT HE 4507 02:33:26,993 --> 02:33:28,428 WAS JUST MENTIONING ABOUT THE 4508 02:33:28,428 --> 02:33:30,397 BOARDS. 4509 02:33:30,397 --> 02:33:33,867 I WAS GOING TO RECOMMEND THE 4510 02:33:33,867 --> 02:33:37,704 ACCREDITATION BOARDS FOR THESE 4511 02:33:37,704 --> 02:33:38,304 INTERDISCIPLINARY TEAMS THAT 4512 02:33:38,304 --> 02:33:40,106 WOULD BE INVOLVED. 4513 02:33:40,106 --> 02:33:42,642 I KNOW ME SPECIFICALLY, I AS IN 4514 02:33:42,642 --> 02:33:46,146 THE PHYSICAL THERAPY DISCIPLINE, 4515 02:33:46,146 --> 02:33:51,117 I'VE HEARD FROM MANY OF OUR DPT 4516 02:33:51,117 --> 02:33:53,119 STUDENTS WHO CONTACTED ME AFTER 4517 02:33:53,119 --> 02:33:55,822 THEIR BOARDS AND THANKED ME FOR 4518 02:33:55,822 --> 02:33:56,990 THE DAY OR TWO THAT THEY WERE 4519 02:33:56,990 --> 02:34:00,894 ABLE TO SHADOW IN CLINIC WITH ME 4520 02:34:00,894 --> 02:34:03,063 BECAUSE THE PT BOARD HAS ADOPTED 4521 02:34:03,063 --> 02:34:05,165 SOME LYMPHADEMA-BASED QUESTIONS 4522 02:34:05,165 --> 02:34:06,900 IN THERE, AND I REMEMBER 4523 02:34:06,900 --> 02:34:09,302 WHENEVER I WAS IN MY PROGRAM, WE 4524 02:34:09,302 --> 02:34:13,373 HAD A VERY, VERY SHORT 4525 02:34:13,373 --> 02:34:15,475 30-MINUTE, MAYBE AN HOUR, 4526 02:34:15,475 --> 02:34:18,545 LECTURE THAT WAS ACTUALLY 4527 02:34:18,545 --> 02:34:20,613 CELLULITIS, BUT BECAUSE OUR 4528 02:34:20,613 --> 02:34:23,149 INSTRUCTOR'S FATHER HAD HAD 4529 02:34:23,149 --> 02:34:24,551 SECONDARY LYMPHADEMA DUE TO 4530 02:34:24,551 --> 02:34:27,187 CARDIOVASCULAR ISSUES, SHE PIGGY 4531 02:34:27,187 --> 02:34:28,621 BACKED HIS LYMPHADEMA, HIS 4532 02:34:28,621 --> 02:34:30,457 SECONDARY LYMPHADEMA TO A 4533 02:34:30,457 --> 02:34:31,558 CELLULITIS, AND THAT'S WHERE I 4534 02:34:31,558 --> 02:34:33,827 HAD EVER EVEN HEARD OF 4535 02:34:33,827 --> 02:34:35,395 LYMPHADEMA AS A CLINICIAN. 4536 02:34:35,395 --> 02:34:36,963 SO I THINK GOING TO THE BOARDS 4537 02:34:36,963 --> 02:34:39,199 THAT ARE ACCREDITING THESE 4538 02:34:39,199 --> 02:34:42,302 PROGRAMS IS ONE WAY. 4539 02:34:42,302 --> 02:34:44,971 I AM IN THE APPLICATION 4540 02:34:44,971 --> 02:34:46,840 PREREQUISITE PROCESS FOR A 4541 02:34:46,840 --> 02:34:49,776 PHYSICIAN ASSISTANT PROGRAM HERE 4542 02:34:49,776 --> 02:34:51,077 IN ARKANSAS, AND I HAVE REACHED 4543 02:34:51,077 --> 02:34:54,347 OUT ACTUALLY TO -- THERE'S A PA 4544 02:34:54,347 --> 02:34:56,316 CONFERENCE THAT'S COMING AND I 4545 02:34:56,316 --> 02:34:58,184 JUST SUBMITTED SOME TOPICS TO 4546 02:34:58,184 --> 02:35:01,354 PRERPRESENT ON WHY LYMPHADEMA 4547 02:35:01,354 --> 02:35:02,355 EDUCATION WOULD BE INTERESTING 4548 02:35:02,355 --> 02:35:05,692 TO PAs, ESPECIALLY IN RURAL 4549 02:35:05,692 --> 02:35:07,660 ARKANSAS BECAUSE I THINK THIS IS 4550 02:35:07,660 --> 02:35:10,830 LIKE THE ARKANSAS PA CONFERENCE. 4551 02:35:10,830 --> 02:35:12,932 ANYWAY, SO I THINK HAVING SOME 4552 02:35:12,932 --> 02:35:13,533 GRASSROOTS ORGANIZATIONS LIKE 4553 02:35:13,533 --> 02:35:15,301 THAT WHERE WE SEND PEOPLE OUT, 4554 02:35:15,301 --> 02:35:18,171 LIKE IF THERE'S A COMMITTEE, 4555 02:35:18,171 --> 02:35:20,974 ITJUST TO EDUCATE, WHO LIKE TO 4556 02:35:20,974 --> 02:35:24,077 EDUCATE AND LIKE TO PRESENT, 4557 02:35:24,077 --> 02:35:27,881 COULD GO TO THESE DIFFERENT 4558 02:35:27,881 --> 02:35:29,048 CONFERENCES BECAUSE I'M NOT A PA 4559 02:35:29,048 --> 02:35:30,683 YET BUT I WANT TO BE A PA AND I 4560 02:35:30,683 --> 02:35:32,752 WANT TO EDUCATE THEM AS WELL. 4561 02:35:32,752 --> 02:35:34,721 ME AS A CLINICIAN, I'VE SHARED 4562 02:35:34,721 --> 02:35:36,489 THIS ON MY PODCAST MANY TIMES. 4563 02:35:36,489 --> 02:35:38,791 I ACTUALLY JUST TALK ABOUT 4564 02:35:38,791 --> 02:35:41,161 LYMPHADEMA IN JUST ABOUT EVERY 4565 02:35:41,161 --> 02:35:42,128 MEDICAL APPOINTMENT THAT I 4566 02:35:42,128 --> 02:35:44,197 PERSONALLY HAVE. 4567 02:35:44,197 --> 02:35:46,065 SO OB-GYN, WE TALK ABOUT 4568 02:35:46,065 --> 02:35:46,366 LYMPHADEMA. 4569 02:35:46,366 --> 02:35:51,271 WHEN I WAS PREGNANT AND BEING 4570 02:35:51,271 --> 02:35:52,272 ULTRASOUND -- AN ULTRASOUND 4571 02:35:52,272 --> 02:35:54,641 TECH, I WOULD TALK TO THEM ABOUT 4572 02:35:54,641 --> 02:35:57,710 SEEING ULTRASOUND LYMPHADEMA IN 4573 02:35:57,710 --> 02:35:59,045 ULTRASOUNDS FOR UNBORN BABIES. 4574 02:35:59,045 --> 02:36:03,917 I'VE TALKED ABOUT IT AT THE 4575 02:36:03,917 --> 02:36:04,918 DENTIST, I'VE BEEN PULLED OVER 4576 02:36:04,918 --> 02:36:07,120 BY AN OFFICER AND I ASKED HIM IF 4577 02:36:07,120 --> 02:36:08,721 HE'S EVER PULLED OVER ANYONE 4578 02:36:08,721 --> 02:36:09,722 WEARING A COMPRESSION GARMENT. 4579 02:36:09,722 --> 02:36:11,558 I THINK IF WE BRING IT UP OFTEN 4580 02:36:11,558 --> 02:36:12,192 ENOUGH, IT GOING TO CLICK. 4581 02:36:12,192 --> 02:36:14,360 I'VE BEEN INVITED BACK BY 4582 02:36:14,360 --> 02:36:15,862 CLINICS AND OFFICES TO SPEAK TO 4583 02:36:15,862 --> 02:36:17,397 THEIR STAFF JUST AFTER BRINGING 4584 02:36:17,397 --> 02:36:19,165 IT UP AT A REGULAR DOCTOR'S 4585 02:36:19,165 --> 02:36:20,133 APPOINTMENT OF MY OWN. 4586 02:36:20,133 --> 02:36:22,835 SO I THINK THERE'S A WAY WE CAN 4587 02:36:22,835 --> 02:36:24,037 ADVOCATE INDIVIDUALLY, BUT I 4588 02:36:24,037 --> 02:36:25,572 THINK THAT IF WE WERE ABLE TO 4589 02:36:25,572 --> 02:36:27,874 CREATE A COMMITTEE THAT 4590 02:36:27,874 --> 02:36:29,842 SPECIFICALLY SOUGHT OUT 4591 02:36:29,842 --> 02:36:31,578 EDUCATION OPPORTUNITIES LIKE 4592 02:36:31,578 --> 02:36:33,446 THIS AND CONTACTED BOARDS AND 4593 02:36:33,446 --> 02:36:34,647 HAD DIFFERENT DISCIPLINES 4594 02:36:34,647 --> 02:36:36,015 WORKING IN THAT, I THINK THAT 4595 02:36:36,015 --> 02:36:37,817 YOU COULD HAVE GOOD SUCCESS IN 4596 02:36:37,817 --> 02:36:39,152 THAT. 4597 02:36:39,152 --> 02:36:40,987 >> THANK YOU, BETTY. 4598 02:36:40,987 --> 02:36:42,589 LAST ANSWER FROM JEN AND KEVIN, 4599 02:36:42,589 --> 02:36:44,591 AND I'M GOING TO PASS IT BACK TO 4600 02:36:44,591 --> 02:36:47,160 YOU, STANLEY, AFTER THAT. 4601 02:36:47,160 --> 02:36:48,861 >> I THINK WHEN WE'RE TALKING 4602 02:36:48,861 --> 02:36:52,966 ABOUT HOW TO GET INCREASED 4603 02:36:52,966 --> 02:36:53,800 ATTENTION ON LYMPHATIC DISEASE 4604 02:36:53,800 --> 02:36:58,238 AT AN EDUCATION LEVEL, WE'RE ALL 4605 02:36:58,238 --> 02:36:59,472 PART OF THE SPECTRUM OF 4606 02:36:59,472 --> 02:37:00,240 LYMPHATIC DISEASE HERE ON THE 4607 02:37:00,240 --> 02:37:01,841 PANEL TODAY AND THE DIFFERENT 4608 02:37:01,841 --> 02:37:03,176 CONDITIONS THAT WE REPRESENT, 4609 02:37:03,176 --> 02:37:07,880 BUT IF WE WANT TO LEARN MORE 4610 02:37:07,880 --> 02:37:10,850 ABOUT LYMPHATIC DISEASE, 4611 02:37:10,850 --> 02:37:12,418 LYMPHATIC DISEASE CAN ACTUALLY 4612 02:37:12,418 --> 02:37:14,320 TEACH US MAINLY ABOUT NORMAL 4613 02:37:14,320 --> 02:37:15,888 FUNCTION OF LYMPHATICS, AND 4614 02:37:15,888 --> 02:37:17,390 THAT'S MAYBE THE AVENUE WE NEED 4615 02:37:17,390 --> 02:37:18,057 TO TAKE. 4616 02:37:18,057 --> 02:37:19,425 THE OTHER THING I WAS THINKING 4617 02:37:19,425 --> 02:37:23,463 JUST WHILE WE'RE TALKING IS, 4618 02:37:23,463 --> 02:37:24,430 LYMPHATICS ARE THE MAIN 4619 02:37:24,430 --> 02:37:25,865 COMPONENT OF THE IMMUNE SYSTEM, 4620 02:37:25,865 --> 02:37:29,135 SO EVEN GETTING IMMUNOLOGY 4621 02:37:29,135 --> 02:37:32,338 INVOLVED WITH THE GREATER NEED 4622 02:37:32,338 --> 02:37:33,273 FOR LYMPHATIC RESEARCH IS AN 4623 02:37:33,273 --> 02:37:33,940 IDEA. 4624 02:37:33,940 --> 02:37:34,841 BUT ANYWAY, THANK YOU. 4625 02:37:34,841 --> 02:37:35,508 THAT'S ALL I HAD TO SAY. 4626 02:37:35,508 --> 02:37:36,909 >> THANK YOU. 4627 02:37:36,909 --> 02:37:37,677 STAN, BACK TO YOU. 4628 02:37:37,677 --> 02:37:39,145 >> THANK YOU. 4629 02:37:39,145 --> 02:37:40,747 VERY PERCEPTIVE COMMENTS, 4630 02:37:40,747 --> 02:37:42,382 EVERYONE, ABOUT THE MEDICAL 4631 02:37:42,382 --> 02:37:42,915 EDUCATION PROCESS. 4632 02:37:42,915 --> 02:37:46,519 I JUST WANT TO UNDERSCORE THE 4633 02:37:46,519 --> 02:37:49,255 FACT THAT WE ALL AGREE THAT THE 4634 02:37:49,255 --> 02:37:53,259 CERTIFYING EXAMINATIONS ARE A 4635 02:37:53,259 --> 02:37:55,328 SUPERHIGHWAY TO AN INCREASE IN 4636 02:37:55,328 --> 02:37:55,828 KNOWLEDGE. 4637 02:37:55,828 --> 02:37:58,564 THE ISSUE THAT IS INVOLVED IS 4638 02:37:58,564 --> 02:37:59,632 GETTING THE INDIVIDUALS WITHIN 4639 02:37:59,632 --> 02:38:02,235 EACH OF THE SOCIETIES WHO WRITE 4640 02:38:02,235 --> 02:38:04,237 THOSE CERTIFYING EXAMINATIONS TO 4641 02:38:04,237 --> 02:38:06,306 BE OPEN TO INCLUDING THESE 4642 02:38:06,306 --> 02:38:08,274 QUESTIONS, AND WE HAVE SEEN IT 4643 02:38:08,274 --> 02:38:10,276 IN MY PERSONAL DISCIPLINE OF 4644 02:38:10,276 --> 02:38:11,377 CARDIOVASCULAR MEDICINE. 4645 02:38:11,377 --> 02:38:13,613 WE DO NOW HAVE QUESTIONS ON THE 4646 02:38:13,613 --> 02:38:14,580 LYMPHATIC SYSTEM ON THE 4647 02:38:14,580 --> 02:38:16,349 CERTIFYING EXAM, BUT WE REALLY 4648 02:38:16,349 --> 02:38:20,586 NEED ACCESS TO THE APPOINTING 4649 02:38:20,586 --> 02:38:22,188 COMMITTEES THAT WILL PLACE THESE 4650 02:38:22,188 --> 02:38:25,658 INDIVIDUALS ON THE CERTIFYING 4651 02:38:25,658 --> 02:38:26,859 EXAM WRITERS COMMITTEE SO THAT 4652 02:38:26,859 --> 02:38:29,595 WE IN TURN INSTIGATE THIS 4653 02:38:29,595 --> 02:38:30,096 PROCESS. 4654 02:38:30,096 --> 02:38:31,698 SO ANYBODY WITH ANY INSIGHTS 4655 02:38:31,698 --> 02:38:33,099 INTO HOW TO ACCOMPLISH THAT 4656 02:38:33,099 --> 02:38:34,400 WITHIN EACH OF THE REALMS THAT 4657 02:38:34,400 --> 02:38:36,169 WE'RE TALKING ABOUT, THIS WILL 4658 02:38:36,169 --> 02:38:39,872 BEBE VERY, VERY USEFUL. 4659 02:38:39,872 --> 02:38:48,314 I WANTED TO ASK A VERY SPECIFIC 4660 02:38:48,314 --> 02:38:52,051 QUESTION OF DR. SHULSA COLAND. 4661 02:38:52,051 --> 02:38:53,052 THANK YOU VERY MUCH, YOUR 4662 02:38:53,052 --> 02:38:54,787 COMMENTS WERE REALLY PERCEPTIVE 4663 02:38:54,787 --> 02:38:56,055 AND I'M VERY IMPRESSED WITH THE 4664 02:38:56,055 --> 02:38:59,792 STEPS THAT VASCER NHAS TAKEN 4665 02:38:59,792 --> 02:39:04,764 PREDOMINANTLY IN THE EUROPEAN 4666 02:39:04,764 --> 02:39:05,898 SETTING BUT ACTUALLY THROUGHOUT 4667 02:39:05,898 --> 02:39:08,234 THE WORLD, AND I WONDER IF YOU 4668 02:39:08,234 --> 02:39:10,169 COULD ADDRESS A LITTLE BIT OF 4669 02:39:10,169 --> 02:39:12,372 THE WAYS WITH OUR COMMISSION 4670 02:39:12,372 --> 02:39:13,873 COULD FURTHER INTERACT WITH YOU 4671 02:39:13,873 --> 02:39:17,443 AND WITH ISSVA TO TRY TO SEE 4672 02:39:17,443 --> 02:39:19,545 WHAT LESSONS WE CAN LEARN FROM 4673 02:39:19,545 --> 02:39:23,850 THE STEPS YOU'VE TAKEN SO THAT 4674 02:39:23,850 --> 02:39:26,519 WE CAN ADDRESS SIMILAR 4675 02:39:26,519 --> 02:39:27,420 APPROACHES AND RECOMMENDATIONS 4676 02:39:27,420 --> 02:39:28,388 TO THE ADVISORY COUNCIL FROM 4677 02:39:28,388 --> 02:39:28,921 THIS COMMISSION. 4678 02:39:28,921 --> 02:39:30,590 >> THAT'S A HUGE TASK. 4679 02:39:30,590 --> 02:39:31,958 FIRST OF ALL IT'S A SLOW 4680 02:39:31,958 --> 02:39:32,191 PROCESS. 4681 02:39:32,191 --> 02:39:34,961 WE STARTED WITH THE NETWORKS I 4682 02:39:34,961 --> 02:39:36,295 THINK SEVEN YEARS AGO. 4683 02:39:36,295 --> 02:39:38,598 YOU'RE REALLY SUPPORTED BY THE 4684 02:39:38,598 --> 02:39:38,765 EU. 4685 02:39:38,765 --> 02:39:42,101 SO IT'S NOT JUST VASCERN. 4686 02:39:42,101 --> 02:39:47,006 WITH THE 55 HOSPITALS, WE'VE GOT 4687 02:39:47,006 --> 02:39:48,074 ABOUT 900 HOSPITALS INVOLVED IN 4688 02:39:48,074 --> 02:39:48,508 THIS. 4689 02:39:48,508 --> 02:39:50,209 WHAT I'VE FOUND OUT, I KNOW A 4690 02:39:50,209 --> 02:39:51,878 LOT OF PEOPLE WILL NOT ACCEPT 4691 02:39:51,878 --> 02:39:52,478 THAT, BUT THESE THINGS ARE 4692 02:39:52,478 --> 02:39:53,880 REALLY MONEY-DRIVEN. 4693 02:39:53,880 --> 02:39:56,616 SO THE MOMENT YOU'VE GOT GRANT 4694 02:39:56,616 --> 02:39:57,383 OPPORTUNITIES AVAILABLE FOR 4695 02:39:57,383 --> 02:39:59,652 EXPERT GROUPS, THEY ARE GETTING 4696 02:39:59,652 --> 02:40:04,590 INTERESTED. 4697 02:40:04,590 --> 02:40:06,759 SO THINK THIS IS ONE WAY OF 4698 02:40:06,759 --> 02:40:09,729 ORGANIZING THINGS OR DIRECTING 4699 02:40:09,729 --> 02:40:11,130 THINGS, THAT'S NUMBER ONE. 4700 02:40:11,130 --> 02:40:13,099 THE SECOND THING IS, YOU REALLY 4701 02:40:13,099 --> 02:40:14,066 NEED TO INVOLVE PATIENT 4702 02:40:14,066 --> 02:40:14,734 ORGANIZATIONS. 4703 02:40:14,734 --> 02:40:16,669 WHAT WE BASICALLY DID IS NOT 4704 02:40:16,669 --> 02:40:21,707 ONLY AT VASCERN LEVEL BUT ALSO 4705 02:40:21,707 --> 02:40:25,111 THE E.U. LEVEL, THE OVERARCHING 4706 02:40:25,111 --> 02:40:28,481 PATIENT ORGANIZATION IS HIGHLY 4707 02:40:28,481 --> 02:40:30,917 INVOLVED IN THE WHOLE SETUP OF 4708 02:40:30,917 --> 02:40:32,351 ALL THOSE NETWORKS. 4709 02:40:32,351 --> 02:40:37,023 WE'LL INVEST IN ITSELF WITH -- 4710 02:40:37,023 --> 02:40:39,192 THE DOCTORS IN THE GROUP ITSELF, 4711 02:40:39,192 --> 02:40:41,160 SO THAT ALSO HELPS AND ALSO 4712 02:40:41,160 --> 02:40:41,994 STEERS THE WAY THE BASIC 4713 02:40:41,994 --> 02:40:43,095 RESEARCH OR THE EDUCATION IS 4714 02:40:43,095 --> 02:40:43,763 GOING. 4715 02:40:43,763 --> 02:40:46,265 TALKING ABOUT EDUCATION, WE JUST 4716 02:40:46,265 --> 02:40:47,366 FINISHED -- IN EUROPE WE HAVE A 4717 02:40:47,366 --> 02:40:53,706 PROGRAM THAT'S CALLED ERASMUS 4718 02:40:53,706 --> 02:40:55,441 COURSES, ALSO SET UP BY THE E.U. 4719 02:40:55,441 --> 02:41:04,684 AND FUNDED BY THE E.U. AND WHERL 4720 02:41:04,684 --> 02:41:05,785 THE UNIVERSITIES CONTRIBUTE AND 4721 02:41:05,785 --> 02:41:06,419 BASICALLY IF SUCH A COURSE IS 4722 02:41:06,419 --> 02:41:10,356 STARTED BY A GROUP, THEN YOUNG 4723 02:41:10,356 --> 02:41:11,290 PHYSICIANS AND WHOEVER CAN 4724 02:41:11,290 --> 02:41:14,827 BASICALLY APPLY TO TAKE THAT 4725 02:41:14,827 --> 02:41:16,395 PART IN THAT COURSE. 4726 02:41:16,395 --> 02:41:21,234 WE TOOK ABOUT TWO WEEKS WHERE -- 4727 02:41:21,234 --> 02:41:24,504 BASICALLY INVITE TODAY ATTEND 4728 02:41:24,504 --> 02:41:26,939 THAT COURSE RECOVERED BY E.U. 4729 02:41:26,939 --> 02:41:28,241 IT GAVE US THE OPPORTUNITY TO 4730 02:41:28,241 --> 02:41:30,109 REALLY SPEND TWO WEEKS WITH THEM 4731 02:41:30,109 --> 02:41:33,679 AND TO REALLY MAKE THEM 4732 02:41:33,679 --> 02:41:34,580 KNOWLEDGEABLE -- BUT YOU 4733 02:41:34,580 --> 02:41:35,815 BASICALLY HOPE IF THEY GO BACK 4734 02:41:35,815 --> 02:41:37,383 TO UNIVERSITIES, AND IF THEY 4735 02:41:37,383 --> 02:41:38,818 START A CAREER, THEY'RE 4736 02:41:38,818 --> 02:41:40,119 BASICALLY GETTING INVOLVED WITH 4737 02:41:40,119 --> 02:41:46,993 OUR PATIENT POPULATION. 4738 02:41:46,993 --> 02:41:49,862 ABOUT HOW WE COULD START THINGS, 4739 02:41:49,862 --> 02:41:51,898 AGAIN I FEEL THE INVOLVEMENT OF 4740 02:41:51,898 --> 02:41:53,099 PATIENT ORGANIZATIONS IS 4741 02:41:53,099 --> 02:41:54,100 ABSOLUTELY ESSENTIAL AND THEY 4742 02:41:54,100 --> 02:41:55,835 SHOULD BE PART OF EVERYTHING 4743 02:41:55,835 --> 02:41:56,636 BASICALLY WHAT WE'RE DOING. 4744 02:41:56,636 --> 02:41:59,105 THEY SHOULD BE PART OF EVERY 4745 02:41:59,105 --> 02:41:59,438 TASK FORCE. 4746 02:41:59,438 --> 02:42:02,542 WHAT I LEARNED TO T TODAY IS A F 4747 02:42:02,542 --> 02:42:03,809 THE PATIENT ORGANIZATIONS IN THE 4748 02:42:03,809 --> 02:42:04,677 UNITED STATES REALLY 4749 02:42:04,677 --> 02:42:05,778 KNOWLEDGEABLE SO THEY REALLY 4750 02:42:05,778 --> 02:42:07,113 KNOW WHAT THEY'RE DOING BUT THE 4751 02:42:07,113 --> 02:42:08,180 MAIN PROBLEM WILL BE HOW ARE 4752 02:42:08,180 --> 02:42:10,116 THEY GOING TO MAINTAIN THEIR 4753 02:42:10,116 --> 02:42:11,551 SOCIETY. 4754 02:42:11,551 --> 02:42:13,052 IT'S OFTEN DEPENDING ON A SMALL 4755 02:42:13,052 --> 02:42:16,022 NUMBER OF PEOPLE, REALLY 4756 02:42:16,022 --> 02:42:17,256 ENTHUSIASTIC TO PUSH THIS 4757 02:42:17,256 --> 02:42:18,591 FORWARD, BASICALLY BEING PART OF 4758 02:42:18,591 --> 02:42:20,826 THE LARGE ORGANIZATION IS A MUCH 4759 02:42:20,826 --> 02:42:26,065 BETTER WAY TO TAKE CARE OF THAT 4760 02:42:26,065 --> 02:42:27,700 SUSTAINABISUSTAINABILITY IS SET. 4761 02:42:27,700 --> 02:42:28,034 >> THANK YOU. 4762 02:42:28,034 --> 02:42:30,202 YOU KNOW, I WANT TO UNDERSCORE 4763 02:42:30,202 --> 02:42:32,638 THE FACT THAT THE REPORT THAT WE 4764 02:42:32,638 --> 02:42:34,607 ARE GENERATING THAT WILL PASS 4765 02:42:34,607 --> 02:42:37,577 THROUGH THE ADVISORY COUNCIL OF 4766 02:42:37,577 --> 02:42:42,248 NHLBI FOR ITS RATIFICATION, 4767 02:42:42,248 --> 02:42:43,716 ULTIMATELY THIS MESSAGE IS 4768 02:42:43,716 --> 02:42:46,819 INTENDED FOR THE U.S. CONGRESS, 4769 02:42:46,819 --> 02:42:48,821 WHICH HAS ASKED THAT THIS 4770 02:42:48,821 --> 02:42:51,891 COMMISSION BE CONVENED IN THE 4771 02:42:51,891 --> 02:42:55,895 FIRST PLACE, SO IN THE PLACE 4772 02:42:55,895 --> 02:42:57,597 THAT VASCERN WAS SUPPORTED BY 4773 02:42:57,597 --> 02:43:03,235 THE E.U., WE HOPE WE WILL 4774 02:43:03,235 --> 02:43:05,338 RECOMMEND WHAT WILL BE SUPPORTED 4775 02:43:05,338 --> 02:43:06,539 ULTIMATELY BY THE U.S. FEDERAL 4776 02:43:06,539 --> 02:43:07,306 GOVERNMENT, WHICH MEANS THAT IF 4777 02:43:07,306 --> 02:43:09,408 WE CAN USE YOUR ACTIVITY AS A 4778 02:43:09,408 --> 02:43:11,677 TEMPLATE OR ROLE MODEL FOR WHAT 4779 02:43:11,677 --> 02:43:12,545 WE MIGHT RECOMMEND, IT WOULD BE 4780 02:43:12,545 --> 02:43:14,080 REALLY USEFUL. 4781 02:43:14,080 --> 02:43:15,281 SO I HOPE WE PERHAPS CAN 4782 02:43:15,281 --> 02:43:16,382 CONTINUE THESE DISCUSSIONS 4783 02:43:16,382 --> 02:43:17,783 OFFLANE TO SEE IF WE CAN LEARN 4784 02:43:17,783 --> 02:43:18,951 MORE ABOUT THE EXACT PATH THAT 4785 02:43:18,951 --> 02:43:20,019 YOU FOLLOWED IN THESE VARIOUS 4786 02:43:20,019 --> 02:43:20,286 ENDEAVORS. 4787 02:43:20,286 --> 02:43:21,487 THANK YOU VERY MUCH. 4788 02:43:21,487 --> 02:43:21,988 >> OKAY. 4789 02:43:21,988 --> 02:43:24,457 >> THANK YOU. 4790 02:43:24,457 --> 02:43:28,961 STAN, ALEXA IS RAISING HER HAND, 4791 02:43:28,961 --> 02:43:32,031 OUR NCLD MEMBER. 4792 02:43:32,031 --> 02:43:33,032 ALEXA, GO AHEAD. 4793 02:43:33,032 --> 02:43:34,266 >> I'M A LYMPHADEMA PATIENT AND 4794 02:43:34,266 --> 02:43:36,002 I SERVE ON THE COMMISSION AND ON 4795 02:43:36,002 --> 02:43:37,670 TWO OF THE SUBCOMMITTEES WHICH 4796 02:43:37,670 --> 02:43:40,139 INCLUDES PATIENT TOOLS AND 4797 02:43:40,139 --> 02:43:41,340 COMMUNITY GROWTH, AND ONE OF THE 4798 02:43:41,340 --> 02:43:43,275 QUESTIONS WE'RE REALLY GRAPPLING 4799 02:43:43,275 --> 02:43:44,944 WITH AND WE ASKED THIS AT THE 4800 02:43:44,944 --> 02:43:47,279 LAST TOWN HALL TOO IS, HOW ARE 4801 02:43:47,279 --> 02:43:49,815 YOU REACHING THE PEOPLE IN THESE 4802 02:43:49,815 --> 02:43:51,350 PATIENT COMMUNITIES WHO DON'T 4803 02:43:51,350 --> 02:43:52,785 EVEN KNOW THEY'RE A PART OF THE 4804 02:43:52,785 --> 02:43:53,653 COMMUNITY YET? 4805 02:43:53,653 --> 02:43:54,654 LIVING WITH THESE LYMPHATIC 4806 02:43:54,654 --> 02:43:58,457 DISEASES IS SO OFTEN ISOLATING 4807 02:43:58,457 --> 02:44:00,326 AND AS EVERYONE EXPRESSED 4808 02:44:00,326 --> 02:44:01,627 ALREADY, IT'S SO HARD TO EVEN 4809 02:44:01,627 --> 02:44:02,962 GET TREATMENT OR DIAGNOSIS, WHAT 4810 02:44:02,962 --> 02:44:03,996 ABOUT FINDING COMMUNITY, WHAT 4811 02:44:03,996 --> 02:44:05,898 ARE SOME EFFECTIVE WAYS YOU'VE 4812 02:44:05,898 --> 02:44:06,532 DONE OUTREACH TO THE PEOPLE WHO 4813 02:44:06,532 --> 02:44:08,000 MAY NOT KNOW THEY HAVE A 4814 02:44:08,000 --> 02:44:18,244 COMMUNITY YET? 4815 02:44:19,979 --> 02:44:24,050 >> ANYONE? 4816 02:44:24,050 --> 02:44:26,552 YOU LINDS 4817 02:44:26,986 --> 02:44:29,755 >> LINDSAY, GO AHEAD SPHWHR. OUR 4818 02:44:29,755 --> 02:44:31,123 COMMUNITY, CLOVES SYNDROME 4819 02:44:31,123 --> 02:44:32,692 COMMUNITY, HAS BEEN USING SOCIAL 4820 02:44:32,692 --> 02:44:33,325 MEDIA TO A WHILE. 4821 02:44:33,325 --> 02:44:34,827 WE HAVE A GREAT FACEBOOK PAGE 4822 02:44:34,827 --> 02:44:36,729 THAT IS FOR OUR PARTICULAR 4823 02:44:36,729 --> 02:44:38,798 COMMUNITY, AND THEN WE USE 4824 02:44:38,798 --> 02:44:40,766 INSTAGRAM TO TRY TO REACH OUT TO 4825 02:44:40,766 --> 02:44:42,468 OTHER PEOPLE AND WE'VE RECENTLY 4826 02:44:42,468 --> 02:44:46,138 STARTED A TIK TOK PAGE, AND IT'S 4827 02:44:46,138 --> 02:44:47,707 BEEN REALLY INCREDIBLE TO SEE 4828 02:44:47,707 --> 02:44:50,910 THE AMOUNT OF PEOPLE THAT HAVE 4829 02:44:50,910 --> 02:44:52,611 BEEN DIAGNOSED WITH CLOVES OR 4830 02:44:52,611 --> 02:44:54,146 THEIR CHILDREN HAVE BEEN 4831 02:44:54,146 --> 02:44:57,316 DIAGNOSED WITH CLOVES AND THEY 4832 02:44:57,316 --> 02:44:58,584 HAVE GONE TO SOMEWHERE LIKE TIK 4833 02:44:58,584 --> 02:45:00,453 TOK TO SEE IF THEY COULD FIND 4834 02:45:00,453 --> 02:45:01,887 ANYONE THAT HAS THE DISEASE AND 4835 02:45:01,887 --> 02:45:05,691 THEY HAVE FOUND OUR COMMUNITY 4836 02:45:05,691 --> 02:45:07,026 THAT WAY, AND THAT'S BEEN A 4837 02:45:07,026 --> 02:45:08,461 REALLY NEAT WAY FOR OUR 4838 02:45:08,461 --> 02:45:13,899 COMMUNITY TO GROW AND FOR PEOPLE 4839 02:45:13,899 --> 02:45:14,667 TO RECOGNIZE THAT THEY DO HAVE 4840 02:45:14,667 --> 02:45:15,134 COMMUNITY. 4841 02:45:15,134 --> 02:45:18,637 SO WE'RE ABLE TO USE THIS 4842 02:45:18,637 --> 02:45:20,473 VIRTUAL SPACE IN ORDER TO HELP 4843 02:45:20,473 --> 02:45:24,977 PEOPLE HAVE SOLIDARITY, AND 4844 02:45:24,977 --> 02:45:26,378 THAT'S BEEN ONE OF THE REALLY 4845 02:45:26,378 --> 02:45:28,414 POSITIVE BENEFITS OF UTILIZING 4846 02:45:28,414 --> 02:45:29,415 SOCIAL MEDIA FOR US. 4847 02:45:29,415 --> 02:45:29,849 >> THANK YOU. 4848 02:45:29,849 --> 02:45:35,287 JEN AND KEVIN. 4849 02:45:35,287 --> 02:45:37,256 >> SO WHAT WE DID IS DRAFTED A 4850 02:45:37,256 --> 02:45:39,425 LETTER TO OUR DOCTOR THAT 4851 02:45:39,425 --> 02:45:40,226 OVERSEES ALL THE PATIENTS 4852 02:45:40,226 --> 02:45:42,695 BASICALLY IN CANADA THAT HAVE 4853 02:45:42,695 --> 02:45:44,063 SIMILAR DISEASE, AND HE WAS ABLE 4854 02:45:44,063 --> 02:45:45,998 TO HAND THEM OUT TO THE PATIENTS 4855 02:45:45,998 --> 02:45:47,099 BECAUSE HE COULD NOT GIVE US 4856 02:45:47,099 --> 02:45:48,834 THEIR INFORMATION BECAUSE THE 4857 02:45:48,834 --> 02:45:49,568 DOCTOR-PATIENT CONFIDENTIALITY, 4858 02:45:49,568 --> 02:45:51,270 OF COURSE, AND THEN FROM THERE, 4859 02:45:51,270 --> 02:45:53,105 THOSE PATIENTS WERE ABLE TO 4860 02:45:53,105 --> 02:45:54,673 RECOGNIZE THAT THERE WAS SOMEONE 4861 02:45:54,673 --> 02:45:55,941 IN CANADA AND THEY CONTACTED US 4862 02:45:55,941 --> 02:45:56,876 THROUGH THAT. 4863 02:45:56,876 --> 02:45:58,010 WE ALSO HAVE OUR WEBSITE AND 4864 02:45:58,010 --> 02:46:00,212 THEN WE TRY AND DO AS MANY TALKS 4865 02:46:00,212 --> 02:46:03,182 AS WE CAN JUST TO GET OURSELVES 4866 02:46:03,182 --> 02:46:04,049 OUT THERE. 4867 02:46:04,049 --> 02:46:05,918 >> THANK YOU. 4868 02:46:05,918 --> 02:46:10,156 MELLENNEE? 4869 02:46:10,156 --> 02:46:11,657 >> WE'VE BEEN ON SOCIAL MEDIA 4870 02:46:11,657 --> 02:46:14,226 FOR A LONG TIME BUT I FIND THAT 4871 02:46:14,226 --> 02:46:16,195 THAT SKIPS AN AWFUL LOT OF 4872 02:46:16,195 --> 02:46:18,864 PEOPLE BECAUSE NOT EVERYBODY 4873 02:46:18,864 --> 02:46:21,500 PARTICIPATES IN SOCIAL MEDIA. 4874 02:46:21,500 --> 02:46:23,536 WE TRY -- WE HAVE PHONE SUPPORT 4875 02:46:23,536 --> 02:46:28,541 THAT WE DO FROM OUR WEBSITE, WET 4876 02:46:28,541 --> 02:46:31,477 A LOT OF THAT, WE DO A LOT OF 4877 02:46:31,477 --> 02:46:32,077 EMAIL SUPPORT. 4878 02:46:32,077 --> 02:46:33,579 ONE OF THE ISSUE THAT I FIND, I 4879 02:46:33,579 --> 02:46:34,547 DON'T KNOW HOW MUCH THIS IS 4880 02:46:34,547 --> 02:46:37,183 SHARED, BUT THE SHIFTING 4881 02:46:37,183 --> 02:46:37,850 TERMINOLOGY MEANS THAT PEOPLE 4882 02:46:37,850 --> 02:46:42,421 HAVE TO KNOW WHAT TO LOOK FOR IN 4883 02:46:42,421 --> 02:46:43,923 ORDER TO SEARCH YOU OUT. 4884 02:46:43,923 --> 02:46:44,824 IF THEY DON'T KNOW THAT YOU HAVE 4885 02:46:44,824 --> 02:46:55,234 NOW INSTEAD OFICALLY PEL -- OR 4886 02:46:55,234 --> 02:46:56,902 PROS, THE DOCTORS ARE NOT GIVING 4887 02:46:56,902 --> 02:46:57,503 THIS INFORMATION TO PATIENT. 4888 02:46:57,503 --> 02:46:58,871 WE DON'T HAVE A WAY TO 4889 02:46:58,871 --> 02:46:59,405 DISSEMINATE THAT. 4890 02:46:59,405 --> 02:47:01,240 SO IT'S KIND OF A -- IT'S KIND 4891 02:47:01,240 --> 02:47:02,842 OF A FRUSTRATING SITUATION FOR A 4892 02:47:02,842 --> 02:47:06,912 LOT OF PATIENTS, AND I HAVE A 4893 02:47:06,912 --> 02:47:08,247 LOT OF QUITE OLDER PEOPLE WHO 4894 02:47:08,247 --> 02:47:11,217 COME TO US AND, OH, I'M 42 YEARS 4895 02:47:11,217 --> 02:47:19,592 OLD AND JUST BEEN DIAGNOSED WITH 4896 02:47:19,592 --> 02:47:21,493 K-T WEBER SYNDROME. 4897 02:47:21,493 --> 02:47:22,695 WHICH IS A DETERMINE THAT HASN'T 4898 02:47:22,695 --> 02:47:24,363 BEEN USED SINCE THE 70s AND 4899 02:47:24,363 --> 02:47:24,663 80s. 4900 02:47:24,663 --> 02:47:26,532 SO WHAT I'M TELLING YOU IS WE 4901 02:47:26,532 --> 02:47:27,833 REALLY NEED TO GET CONSISTENT ON 4902 02:47:27,833 --> 02:47:30,469 THE TERMINOLOGY AND THEN MAKE 4903 02:47:30,469 --> 02:47:31,804 SURE THAT THAT'S DISSEMINATED 4904 02:47:31,804 --> 02:47:33,005 AND THAT WILL GO A LONG WAY 4905 02:47:33,005 --> 02:47:37,443 TOWARD HELPING PEOPLE I FINDING 4906 02:47:37,443 --> 02:47:39,545 THE HELP THAT THEY NEED. 4907 02:47:39,545 --> 02:47:39,745 BETTY? 4908 02:47:39,745 --> 02:47:41,013 >> SO IN THE PEDIATRIC 4909 02:47:41,013 --> 02:47:42,581 LYMPHADEMA CIRCLE, ONE OF THE 4910 02:47:42,581 --> 02:47:47,519 WAYS THAT WE HAVE BUILT 4911 02:47:47,519 --> 02:47:48,721 COMMUNITY, AND BRITTANY 4912 02:47:48,721 --> 02:47:49,488 MENTIONED THIS JUST BRIEFLY IN 4913 02:47:49,488 --> 02:47:52,157 HER OPENING STATEMENTS, SO WE 4914 02:47:52,157 --> 02:47:54,960 HAVE A SUMMER CAMP CALLED CAMP 4915 02:47:54,960 --> 02:47:57,263 WATCHME THAT WE HOST, AND OUR 4916 02:47:57,263 --> 02:48:01,433 SUMMER CAMP, IT'S SPECIAL AND WE 4917 02:48:01,433 --> 02:48:04,703 HOPE TO BE ABLE TO EXPAND TO 4918 02:48:04,703 --> 02:48:06,038 DIFFERENT REGIONS AND TO HAVE 4919 02:48:06,038 --> 02:48:07,439 MULTIPLES A YEAR, BUT SO FAR 4920 02:48:07,439 --> 02:48:10,509 WHAT WE'VE BEEN ABLE TO DO IS WE 4921 02:48:10,509 --> 02:48:11,911 HAVE THREE SESSIONS, SO FIRST 4922 02:48:11,911 --> 02:48:15,347 TIME FAMILIES WHO ATTEND WHO'VE 4923 02:48:15,347 --> 02:48:17,816 NEVER HAD MUCH INFORMATION ON 4924 02:48:17,816 --> 02:48:19,585 LYMPHADEMA, AND THEN WE ALSO 4925 02:48:19,585 --> 02:48:22,021 HAVE AN ALUMNI, SO THEY GET 4926 02:48:22,021 --> 02:48:23,389 EDUCATION AND THEY GET TO 4927 02:48:23,389 --> 02:48:25,758 INTERACT WITH EACH OTHER. 4928 02:48:25,758 --> 02:48:27,092 PARENTS GET EDUCATION, KIDS GET 4929 02:48:27,092 --> 02:48:29,228 TO BE KIDS AND THEN WE HAVE A 4930 02:48:29,228 --> 02:48:30,229 REUNION SESSION THAT IS A LITTLE 4931 02:48:30,229 --> 02:48:31,931 BIT MORE LAID BACK AND IT IS 4932 02:48:31,931 --> 02:48:36,068 MORE OF A REUNION, JUST HAVING A 4933 02:48:36,068 --> 02:48:37,970 VACATION WITH YOUR FRIENDS. 4934 02:48:37,970 --> 02:48:40,239 AND ALL OF THEM HAVE CLTs WHO 4935 02:48:40,239 --> 02:48:41,840 VOLUNTEER AND COME AND DONATE 4936 02:48:41,840 --> 02:48:44,009 THEIR TIME TO BE WITH THEM AT 4937 02:48:44,009 --> 02:48:44,677 CAMP. 4938 02:48:44,677 --> 02:48:47,880 WE HAVE PATIENT ADVOCATES, WE 4939 02:48:47,880 --> 02:48:50,215 CALL THEM PALs, SO THEY ARE 4940 02:48:50,215 --> 02:48:51,317 ADULTS WHO WERE CHILDREN ONCE 4941 02:48:51,317 --> 02:48:53,552 WITH LYMPHADEMA AND THEY GET TO 4942 02:48:53,552 --> 02:48:54,954 COME AND INTERACT AND ENGAGE 4943 02:48:54,954 --> 02:48:56,055 WITH THOSE KIDS. 4944 02:48:56,055 --> 02:48:57,489 ALEXA IS ACTUALLY ONE OF THOSE 4945 02:48:57,489 --> 02:48:59,024 WHO'S BEEN THERE WITH US FOR 4946 02:48:59,024 --> 02:49:00,225 MULTIPLE SUMMERS TO JUST SHOW 4947 02:49:00,225 --> 02:49:03,162 THAT IT CAN -- IT GETS BETTER 4948 02:49:03,162 --> 02:49:05,464 AND THEN THE CLTs, THEY BUILD 4949 02:49:05,464 --> 02:49:07,132 THE COMMUNITY AMONGST THE CLTs 4950 02:49:07,132 --> 02:49:09,234 AND THEN THE KIDS BUILD A 4951 02:49:09,234 --> 02:49:10,736 COMMUNITY AMONGST EACH OTHER, 4952 02:49:10,736 --> 02:49:11,937 PARENTS, THEY DIDN'T HAVE A 4953 02:49:11,937 --> 02:49:16,442 NETWORK OF SUPPORT THAT THEY CAN 4954 02:49:16,442 --> 02:49:17,843 LEAN ON AS THEY GO THROUGHOUT 4955 02:49:17,843 --> 02:49:18,944 THEIR YEAR. 4956 02:49:18,944 --> 02:49:19,578 BRITTANY AND I PERSONALLY TAKE 4957 02:49:19,578 --> 02:49:23,082 PHONE CALLS AND DO EMAILS. 4958 02:49:23,082 --> 02:49:26,151 AS MEDICAL ADVISOR, THAT'S 4959 02:49:26,151 --> 02:49:28,587 REALLY MY MAIN ROLE, JUST LIKE 4960 02:49:28,587 --> 02:49:30,856 BEING A EAR FOR A LOT OF THESE 4961 02:49:30,856 --> 02:49:33,392 PARENTS AND SOME OF THESE KIDS 4962 02:49:33,392 --> 02:49:34,026 WHENEVER THEY NEED IT. 4963 02:49:34,026 --> 02:49:36,095 AND THEY HAVE TAKEN IT AMONGST 4964 02:49:36,095 --> 02:49:36,996 THEMSELVES TO MAINTAIN THAT 4965 02:49:36,996 --> 02:49:38,097 COMMUNITY SO THE KIDS AND THE 4966 02:49:38,097 --> 02:49:39,431 PARENTS AND THE THERAPISTS, THEY 4967 02:49:39,431 --> 02:49:40,032 KEEP UP. 4968 02:49:40,032 --> 02:49:41,266 EVERY YEAR WE GROW IT. 4969 02:49:41,266 --> 02:49:43,202 THERE'S MORE FAMILIES COMING AND 4970 02:49:43,202 --> 02:49:45,170 ENGAGING OR IF THEY SKIP A 4971 02:49:45,170 --> 02:49:46,605 SUMMER, THEY COME BACK THE NEXT 4972 02:49:46,605 --> 02:49:47,673 SUMMER, THERE'S A WAVE OF NEW 4973 02:49:47,673 --> 02:49:49,341 PEOPLE THAT'S INVOLVED. 4974 02:49:49,341 --> 02:49:53,245 AND I HAD HEARD -- HAD LISTENED 4975 02:49:53,245 --> 02:49:54,279 TO MANY OF THE PRESENTATIONS 4976 02:49:54,279 --> 02:49:55,147 THIS MORNING AND THOUGHT IF 4977 02:49:55,147 --> 02:49:58,417 ANYONE IS INTERESTED IN LEARNING 4978 02:49:58,417 --> 02:50:00,452 FROM ME AND BRITTANY ON LIKE OUR 4979 02:50:00,452 --> 02:50:01,387 STRUCTURE FOR ANY OF THAT OR IF 4980 02:50:01,387 --> 02:50:03,022 YOU'D LIKE TO HOST YOUR OWN CAMP 4981 02:50:03,022 --> 02:50:04,456 FOR YOUR ORGANIZATION IN SOME 4982 02:50:04,456 --> 02:50:06,392 WAY, I'M HAPPY TO SHARE ANY 4983 02:50:06,392 --> 02:50:07,393 INFORMATION IF THAT'S SOMETHING 4984 02:50:07,393 --> 02:50:10,095 THAT YOU THINK THAT WOULD BE 4985 02:50:10,095 --> 02:50:10,329 HELPFUL. 4986 02:50:10,329 --> 02:50:12,564 IT DOESN'T HAVE TO BE A LONG -- 4987 02:50:12,564 --> 02:50:14,299 IT'S LIKE A THREE-DAY, 4988 02:50:14,299 --> 02:50:15,167 FOUR-NIGHT CAMP. 4989 02:50:15,167 --> 02:50:17,469 IT COULD BE A SHORTER OVERNIGHT 4990 02:50:17,469 --> 02:50:18,704 STAY, BUT I'M HAPPY TO DISCUSS 4991 02:50:18,704 --> 02:50:20,005 THAT WITH ANYONE WHO WOULD THINK 4992 02:50:20,005 --> 02:50:21,040 THAT WOULD BE INTERESTING FOR 4993 02:50:21,040 --> 02:50:22,241 THEIR GROUP OF PEOPLE AS WELL. 4994 02:50:22,241 --> 02:50:29,515 >> THANK YOU, B BETTY. 4995 02:50:29,515 --> 02:50:30,182 LAST RESPONSE FROM DANA AND THEN 4996 02:50:30,182 --> 02:50:31,717 I'LL GIVE IT BACK TO YOU, STAN. 4997 02:50:31,717 --> 02:50:33,218 >> SO IN ADDITION TO OUR WEBSITE 4998 02:50:33,218 --> 02:50:36,288 AND OUR SOCIAL MEDIA SUCH AS 4999 02:50:36,288 --> 02:50:37,489 FACEBOOK, SUCH AS WE HAVE A 5000 02:50:37,489 --> 02:50:40,459 DISCORD GROUP SPECIFICALLY FOR 5001 02:50:40,459 --> 02:50:44,630 TEENS, K WE CREATED AN EDUCATIOL 5002 02:50:44,630 --> 02:50:45,898 BROCHURE, WE HAD ALL OF OUR 5003 02:50:45,898 --> 02:50:47,266 CONTACT INFORMATION ON IT AND WE 5004 02:50:47,266 --> 02:50:49,668 HANDED OUT A PAPER VERSION TO AS 5005 02:50:49,668 --> 02:50:50,969 MANY VASCULAR ANOMALY CENTERS 5006 02:50:50,969 --> 02:50:52,604 AND DOCTORS AS WE COULD. 5007 02:50:52,604 --> 02:50:54,807 AND WE ASKED THEM TO DISSEMINATE 5008 02:50:54,807 --> 02:50:59,211 THE BROCHURES IN THE HOPES THAT 5009 02:50:59,211 --> 02:51:00,612 PEOPLE WOULD REACH OUT TO US. 5010 02:51:00,612 --> 02:51:03,549 BECAUSE AT THE END OF THE TAI, , 5011 02:51:03,549 --> 02:51:05,250 WE REALIZE THE BEST THING WE CAN 5012 02:51:05,250 --> 02:51:06,685 DO TO REACH OUT TO PEOPLE IS TO 5013 02:51:06,685 --> 02:51:07,986 PUT OURSELVES OUT THERE AND HAVE 5014 02:51:07,986 --> 02:51:10,222 THEM REACH OUT TO US. 5015 02:51:10,222 --> 02:51:14,793 >> THANK YOU. 5016 02:51:14,793 --> 02:51:15,427 STAN, BACK TO YOU. 5017 02:51:15,427 --> 02:51:15,994 >> THANK YOU. 5018 02:51:15,994 --> 02:51:17,296 WE HAVE JUST A COUPLE OF MINUTES 5019 02:51:17,296 --> 02:51:17,629 LEFT. 5020 02:51:17,629 --> 02:51:20,132 I REALLY WANT TO POSE ONE 5021 02:51:20,132 --> 02:51:22,768 ADDITIONAL QUESTION TO OUR 5022 02:51:22,768 --> 02:51:23,535 MEDICAL EXPERTS. 5023 02:51:23,535 --> 02:51:25,971 WE'VE HEARD A LOT THIS MORNING 5024 02:51:25,971 --> 02:51:30,776 ABOUT CHALLENGES RELATED TO 5025 02:51:30,776 --> 02:51:31,543 REPURPOSING OF DRUGS FOR 5026 02:51:31,543 --> 02:51:32,644 TREATMENT OF THESE RARE 5027 02:51:32,644 --> 02:51:33,812 DISORDERS AND DEVELOPMENT OF NEW 5028 02:51:33,812 --> 02:51:34,279 DRUGS. 5029 02:51:34,279 --> 02:51:37,749 I WONDER IF ANY OF OUR 5030 02:51:37,749 --> 02:51:39,518 REPRESENTATIVES TODAY CAN SPEAK 5031 02:51:39,518 --> 02:51:40,986 A LITTLE BIT TO THE INTERACTIONS 5032 02:51:40,986 --> 02:51:43,722 WITH THE FDA OR OTHER BARRIERS 5033 02:51:43,722 --> 02:51:47,226 THAT RELATE TO THE AVAILABILITY 5034 02:51:47,226 --> 02:51:49,862 OF THESE DRUGS, THE RESOURCES, 5035 02:51:49,862 --> 02:51:52,297 THE COST, THE REIMBURSEMENT, 5036 02:51:52,297 --> 02:51:52,998 ANYTHING THAT WE CAN LEARN ABOUT 5037 02:51:52,998 --> 02:51:58,137 THIS. 5038 02:51:58,137 --> 02:52:01,073 >> YES, DENISE. 5039 02:52:01,073 --> 02:52:02,875 >> SO THERE'S A LOT OF THINGS TO 5040 02:52:02,875 --> 02:52:07,980 CONSIDER WITH THAT, STAN. 5041 02:52:07,980 --> 02:52:10,716 SO BECAUSE MANY OF OUR DRUGS 5042 02:52:10,716 --> 02:52:12,117 WITH THE PATIENTS THAT HAVE THE 5043 02:52:12,117 --> 02:52:15,654 SOMATIC MUTATION ARE ONCOLOGIC, 5044 02:52:15,654 --> 02:52:18,257 WHEN WE GO TO THE FDA, WHETHER 5045 02:52:18,257 --> 02:52:20,993 YOU'RE GOING AS AN INVESTIGATOR 5046 02:52:20,993 --> 02:52:25,264 SPONSORED OR A PHARMACEUTICAL 5047 02:52:25,264 --> 02:52:26,999 SPONSORED,ING IF YOU GO TO THE 5048 02:52:26,999 --> 02:52:28,867 ONCOLOGY BRANCH, THEY WANT 5049 02:52:28,867 --> 02:52:29,835 ONCOLOGICAL END POINTS. 5050 02:52:29,835 --> 02:52:31,236 AND WE KNOW THAT WITH OUR 5051 02:52:31,236 --> 02:52:35,574 PATIENTS, I MEAN, HOW DO YOU 5052 02:52:35,574 --> 02:52:37,709 HAVE AN ONCOLOGICAL END POINT 5053 02:52:37,709 --> 02:52:39,912 THAT IS A VOLUMETRIC TEST 5054 02:52:39,912 --> 02:52:42,214 SHOWING A CENTRAL CONDUCTING 5055 02:52:42,214 --> 02:52:43,315 DISORDER, THE BEST THING YOU CAN 5056 02:52:43,315 --> 02:52:45,184 SEE IS DECREASE IN THE PLEURAL 5057 02:52:45,184 --> 02:52:47,052 EFFUSION OR DECREASE IN THE 5058 02:52:47,052 --> 02:52:47,519 ASCITES. 5059 02:52:47,519 --> 02:52:50,088 BUT VERY TO TO HAVE DIFFERENT 5060 02:52:50,088 --> 02:52:51,323 OUT COME MEASURES AND DIFFERENT 5061 02:52:51,323 --> 02:52:52,424 PRIMARY END POINTS, AND WE HAVE 5062 02:52:52,424 --> 02:52:57,029 A DIFFICULT TIME WITH THAT. 5063 02:52:57,029 --> 02:52:58,797 WE DON'T HAVE THE NCI, LIKE I GO 5064 02:52:58,797 --> 02:53:00,199 TO THE NCI EVERY THREE MONTHS 5065 02:53:00,199 --> 02:53:02,167 BECAUSE I'M ON THIS EDITORIAL 5066 02:53:02,167 --> 02:53:03,936 BOARD, AND THEY HAVE DRUGS THERE 5067 02:53:03,936 --> 02:53:05,370 THAT COME THROUGH THAT PEOPLE 5068 02:53:05,370 --> 02:53:06,905 GET IN PEDIATRIC ONCOLOGY. 5069 02:53:06,905 --> 02:53:09,074 WE DON'T HAVE THAT. 5070 02:53:09,074 --> 02:53:13,212 SO WE ARE SOMEWHAT AT THE MERCY 5071 02:53:13,212 --> 02:53:15,948 OF THE PHARMACEUTICAL COMPANIES, 5072 02:53:15,948 --> 02:53:17,482 AND I MEAN, YOU SEE WHAT 5073 02:53:17,482 --> 02:53:22,854 HAPPENED WITH OUR DRUG 5074 02:53:22,854 --> 02:53:23,455 ALPALASIV, CONDITIONALLY 5075 02:53:23,455 --> 02:53:24,990 APPROVED BY THE FDA, IT IS SO 5076 02:53:24,990 --> 02:53:25,824 EXPENSIVE. 5077 02:53:25,824 --> 02:53:27,726 SO WE KNEW RIGHT AWAY THAT THAT 5078 02:53:27,726 --> 02:53:29,928 WOULD BE LIKE THAT, SO WE HAVE A 5079 02:53:29,928 --> 02:53:31,196 TEAM OF PEOPLE THAT WRITE 5080 02:53:31,196 --> 02:53:34,199 LETTERS AND CALL, BUT NOT EVERY 5081 02:53:34,199 --> 02:53:37,603 CENTER HAS THOSE RESOURCES THAT 5082 02:53:37,603 --> 02:53:39,137 WE HAVE AT THE BIGGEST CENTERS 5083 02:53:39,137 --> 02:53:40,973 TO DO THAT, TO HELP WRITE 5084 02:53:40,973 --> 02:53:41,673 LETTERS AND CALL INSURANCE 5085 02:53:41,673 --> 02:53:43,508 COMPANIES AND TALK TO PARENTS 5086 02:53:43,508 --> 02:53:45,477 AND GIVE THEM GUIDANCE, YOU 5087 02:53:45,477 --> 02:53:46,245 KNOW? 5088 02:53:46,245 --> 02:53:50,082 AND THEN WHEN YOU HAVE SOMEONE 5089 02:53:50,082 --> 02:53:50,949 THAT -- THEY'RE TOLD THEY HAVE 5090 02:53:50,949 --> 02:53:53,385 TO PAY OUT OF POCKET A THOUSAND 5091 02:53:53,385 --> 02:53:54,820 TO $8,000 A MONTH, NO ONE COULD 5092 02:53:54,820 --> 02:53:58,156 DO THAT. 5093 02:53:58,156 --> 02:53:58,523 IT'S IMPOSSIBLE. 5094 02:53:58,523 --> 02:54:01,927 SO I THINK THERE ARE -- WE NEED 5095 02:54:01,927 --> 02:54:03,228 AN ARMAMENTARIUM OF DRUGS AND WE 5096 02:54:03,228 --> 02:54:06,098 NEED TO FIND A WAY, IT BEEN -- 5097 02:54:06,098 --> 02:54:08,867 IT'S BEEN VERY HELPFUL THAT THE 5098 02:54:08,867 --> 02:54:09,601 PHARMACEUTICAL INDUSTRY IS 5099 02:54:09,601 --> 02:54:12,671 INTERESTED IN THESE RARE 5100 02:54:12,671 --> 02:54:13,739 DISEASES. 5101 02:54:13,739 --> 02:54:16,942 BUT IT WOULD BE SO HELPFUL IF WE 5102 02:54:16,942 --> 02:54:20,445 HAD SUPPORT AT THE NIH WITH ALL 5103 02:54:20,445 --> 02:54:24,049 OF THESE PERHAPS WITH MORE DRUG 5104 02:54:24,049 --> 02:54:24,950 TRIAL MONEY AND THINGS LIKE 5105 02:54:24,950 --> 02:54:30,322 THAT. 5106 02:54:30,322 --> 02:54:31,823 SO WE WERE AT THEIR MERCY. 5107 02:54:31,823 --> 02:54:33,292 I DON'T SAY THAT IN A BAD WAY 5108 02:54:33,292 --> 02:54:34,593 BECAUSE THEY'VE BEEN VERY 5109 02:54:34,593 --> 02:54:35,794 HELPFUL, AND IT'S OPENED UP. 5110 02:54:35,794 --> 02:54:38,230 THERE WILL BE MORE PIK3CA 5111 02:54:38,230 --> 02:54:38,764 INHIBITORS OUT THERE. 5112 02:54:38,764 --> 02:54:41,099 WE HAVE TO WORRY ABOUT LONG-TERM 5113 02:54:41,099 --> 02:54:42,734 USE, RIGHT? 5114 02:54:42,734 --> 02:54:44,136 IT'S THE SAME THING WITH LAM, 5115 02:54:44,136 --> 02:54:45,537 LIKE WHAT ARE THE LONG-TERM 5116 02:54:45,537 --> 02:54:45,771 EFFECTS? 5117 02:54:45,771 --> 02:54:46,905 WE HAVE TO WORRY ABOUT ALL THESE 5118 02:54:46,905 --> 02:54:48,073 THINGS THAT YOU DON'T HAVE TO 5119 02:54:48,073 --> 02:54:52,144 WORRY ABOUT IN ONCOLOGY AS MUCH. 5120 02:54:52,144 --> 02:54:56,315 SO THERE ARE MANY, MANY, MANY 5121 02:54:56,315 --> 02:54:57,382 ISSUES WITH ALL OF THAT. 5122 02:54:57,382 --> 02:55:00,152 WE ARE REPURPOSING DRUGS, WE ARE 5123 02:55:00,152 --> 02:55:01,353 GETTING OTHERS THERE. 5124 02:55:01,353 --> 02:55:05,324 IT IS A VERY SLOW PROCESS TOO. 5125 02:55:05,324 --> 02:55:06,925 AND AGAIN, NOT A LOT OF FUNDING 5126 02:55:06,925 --> 02:55:08,927 FOR THIS. 5127 02:55:08,927 --> 02:55:10,028 >> THANK YOU, DENISE. 5128 02:55:10,028 --> 02:55:11,229 THAT'S REALLY HELPFUL. 5129 02:55:11,229 --> 02:55:12,597 I THINK WE HAVE ONE MORE HAND UP 5130 02:55:12,597 --> 02:55:14,833 AND I THINK WE MIGHT BE AT -- 5131 02:55:14,833 --> 02:55:19,838 >> I JUST WANTED TO DOVETAIL ON 5132 02:55:19,838 --> 02:55:22,607 WHAT DR. ADAMS WAS SAYING. 5133 02:55:22,607 --> 02:55:26,244 IF WE GET RID OF THE END POINTS 5134 02:55:26,244 --> 02:55:27,579 THAT ARE ABOUT MEASURING A MASS, 5135 02:55:27,579 --> 02:55:29,514 WE NEED TO REPLACE THOSE WITH 5136 02:55:29,514 --> 02:55:30,382 ALTERNATE END POINTS. 5137 02:55:30,382 --> 02:55:35,220 AND I THINK THAT WE DON'T 5138 02:55:35,220 --> 02:55:35,987 ACTUALLY HAVE GOOD THINGS TO 5139 02:55:35,987 --> 02:55:37,289 OFFER AND THAT MIGHT ACTUALLY BE 5140 02:55:37,289 --> 02:55:40,492 A BETTER FIT FOR THE NIH, IS 5141 02:55:40,492 --> 02:55:42,227 HELPING DEVELOP ALTERNATE 5142 02:55:42,227 --> 02:55:43,762 MEASURES RATHER THAN NECESSARILY 5143 02:55:43,762 --> 02:55:45,697 FUNDING. 5144 02:55:45,697 --> 02:55:46,431 TRIALS. 5145 02:55:46,431 --> 02:55:50,702 >> ANY LAST INSIGHTS ON FDA 5146 02:55:50,702 --> 02:55:52,070 DRUGS, DRUG DEVELOPMENT? 5147 02:55:52,070 --> 02:55:54,306 >> STAN, THERE █IS QUITE A BIT F 5148 02:55:54,306 --> 02:55:56,842 MESSAGING GOING AROUND IN THE 5149 02:55:56,842 --> 02:55:59,144 CHAT, AND EVERYONE IS BASICALLY 5150 02:55:59,144 --> 02:56:01,313 AGREEING THAT THE BIGGEST 5151 02:56:01,313 --> 02:56:02,814 BARRIER IS THE PHARMA'S 5152 02:56:02,814 --> 02:56:03,915 WILLINGNESS TO INVEST IN OUR 5153 02:56:03,915 --> 02:56:04,216 POPULATION. 5154 02:56:04,216 --> 02:56:07,919 THERE IS NO FINANCIAL INCENTIVE. 5155 02:56:07,919 --> 02:56:15,894 AND ALSO DOCT -- FROM NHLBI WAS 5156 02:56:15,894 --> 02:56:17,362 ASKING EVERYONE IF THEY 5157 02:56:17,362 --> 02:56:19,331 CONSIDER -- ARE THESE 5158 02:56:19,331 --> 02:56:20,298 ORGANIZATIONS CONSIDERING 5159 02:56:20,298 --> 02:56:22,601 PUTTING THEIR INFORMATION IN THE 5160 02:56:22,601 --> 02:56:26,004 NIH'S RARE DISEASES NETWORK, AND 5161 02:56:26,004 --> 02:56:26,705 IT IS ON THE CHAT. 5162 02:56:26,705 --> 02:56:31,343 YOU CAN SEE THE -- I CAN REPOST 5163 02:56:31,343 --> 02:56:31,910 IT, AND THAT'S IT. 5164 02:56:31,910 --> 02:56:32,844 >> WONDERFUL. 5165 02:56:32,844 --> 02:56:34,146 WELL, I THINK WE ARE COMING TO 5166 02:56:34,146 --> 02:56:38,884 THE END OF A REALLY 5167 02:56:38,884 --> 02:56:39,918 EXTRAORDINARY INFORMATIVE 5168 02:56:39,918 --> 02:56:42,554 ILLUMINATING SESSION. 5169 02:56:42,554 --> 02:56:44,289 I AM SO INCREDIBLY THANKFUL ON 5170 02:56:44,289 --> 02:56:47,893 BEHALF OF OUR ENTIRE COMMISSION, 5171 02:56:47,893 --> 02:56:50,195 AND MYCO-CHAIR, STEPH DREYER, 5172 02:56:50,195 --> 02:56:51,430 FOR EVERYBODY'S PARTICIPATION 5173 02:56:51,430 --> 02:56:54,366 HERE, YOUR HONESTY, YOUR 5174 02:56:54,366 --> 02:56:55,033 FORTHRIGHTNESS, AS I SAID 5175 02:56:55,033 --> 02:56:56,768 BEFORE, YOUR COURAGE AND YOUR 5176 02:56:56,768 --> 02:57:00,005 DEDICATION, THIS IS AN 5177 02:57:00,005 --> 02:57:00,772 EXTRAORDINARILY IMPORTANT TOPIC, 5178 02:57:00,772 --> 02:57:02,507 AND YOU HAVE HELPED US TO LEARN 5179 02:57:02,507 --> 02:57:04,242 A GREAT DEAL THAT I THINK WILL 5180 02:57:04,242 --> 02:57:07,145 BE EXTREMELY USEFUL FOR OUR 5181 02:57:07,145 --> 02:57:08,313 COMMISSION AND FOR THE REPORT 5182 02:57:08,313 --> 02:57:10,682 THAT WE WILL ULTIMATELY DELIVER. 5183 02:57:10,682 --> 02:57:13,285 SO THANK YOU VERY MUCH TO ALL OF 5184 02:57:13,285 --> 02:57:14,586 YOU WHO HAVE PARTICIPATED TODAY, 5185 02:57:14,586 --> 02:57:15,887 AND THANK YOU ALSO TO THOSE THAT 5186 02:57:15,887 --> 02:57:17,389 ARE PARTICIPATING ON THE 5187 02:57:17,389 --> 02:57:18,790 VIDEOCAST, AND ONCE AGAIN, 5188 02:57:18,790 --> 02:57:27,232 THANKS TO MY COULD-CHAIR, STEPH 5189 02:57:27,232 --> 02:57:27,466 DREYER. 5190 02:57:27,466 --> 02:57:28,567 >> THANK YOU, I WANT TO JOIN IN 5191 02:57:28,567 --> 02:57:30,168 WITH THE THANKS AS WE CLOSE THIS 5192 02:57:30,168 --> 02:57:31,536 FORUM, I WOULD LIKE TO EXPRESS 5193 02:57:31,536 --> 02:57:32,838 OUR HEARTFELT GRATITUDE TO 5194 02:57:32,838 --> 02:57:35,006 EVERYONE WHO JOINED US TODAY AS 5195 02:57:35,006 --> 02:57:36,608 PANELISTS, AND ALSO AS 5196 02:57:36,608 --> 02:57:37,342 LISTENERS, A SPECIAL THANK YOU 5197 02:57:37,342 --> 02:57:38,877 GOES TO ALL THE PATIENT 5198 02:57:38,877 --> 02:57:41,646 ORGANIZATIONS AND 5199 02:57:41,646 --> 02:57:42,914 REPRESENTATIVES WHO COURAGEOUSLY 5200 02:57:42,914 --> 02:57:46,952 SHARED THEIR EXPERIENCES. 5201 02:57:46,952 --> 02:57:47,986 IT WAS VERY MUCH APPRECIATED ON 5202 02:57:47,986 --> 02:57:51,556 OUR END, AND THIS WILL HELP US 5203 02:57:51,556 --> 02:57:52,824 ADVANCE OUR UNDERSTANDING OF 5204 02:57:52,824 --> 02:57:54,826 LYMPHATIC DISEASES AND IMPROVE 5205 02:57:54,826 --> 02:57:56,027 HEALTH AND CARE OF THOSE 5206 02:57:56,027 --> 02:57:56,461 AFFECTED. 5207 02:57:56,461 --> 02:57:59,197 WE ARE ALSO DEEPLY GRATEFUL TO 5208 02:57:59,197 --> 02:58:01,633 THE NCLD MEMBERS AND CO-CHAIRS 5209 02:58:01,633 --> 02:58:03,935 FOR THEIR LEADERSHIP AND FOR 5210 02:58:03,935 --> 02:58:04,903 FACILITATING TODAY'S 5211 02:58:04,903 --> 02:58:05,837 THOUGHT-PROVOKING DISCUSSIONS 5212 02:58:05,837 --> 02:58:08,540 WHICH WILL CONTRIBUTE 5213 02:58:08,540 --> 02:58:09,374 SIGNIFICANTLY TO COMMISSION 5214 02:58:09,374 --> 02:58:09,641 SUCCESS. 5215 02:58:09,641 --> 02:58:12,511 AND I WANT TO EMPHASIZE THAT 5216 02:58:12,511 --> 02:58:13,111 THIS IMPORTANT DISCUSSION IS 5217 02:58:13,111 --> 02:58:14,379 RECORDED AND WILL BE AVAILABLE 5218 02:58:14,379 --> 02:58:17,148 AT THE SAME LINK AND IT IS ALSO 5219 02:58:17,148 --> 02:58:18,650 STORED IN THE NCLD'S WEBSITE 5220 02:58:18,650 --> 02:58:21,720 ALONG WITH THE OTHER MEETINGS. 5221 02:58:21,720 --> 02:58:22,787 ADDITIONALLY, I WANT TO 5222 02:58:22,787 --> 02:58:23,655 ACKNOWLEDGE THE OUTSTANDING 5223 02:58:23,655 --> 02:58:26,725 SUPPORT PROVIDED BY THE NHLBI 5224 02:58:26,725 --> 02:58:30,629 TEAM, INCLUDING NHLBI 5225 02:58:30,629 --> 02:58:34,165 LEADERSHIP, EXTRAMURAL PROGRAM 5226 02:58:34,165 --> 02:58:37,836 STAFF AND TRANS-NIH LYMPHATIC 5227 02:58:37,836 --> 02:58:39,271 COORDINATION COMMITTEE AND NIH 5228 02:58:39,271 --> 02:58:41,139 VIDEOCASTING AND LAST BUT NOT 5229 02:58:41,139 --> 02:58:42,007 LEAST, NHLBI WORKSHOP SUPPORT 5230 02:58:42,007 --> 02:58:42,674 TEAM. 5231 02:58:42,674 --> 02:58:45,076 THEIR EFFORTS HAVE BEEN 5232 02:58:45,076 --> 02:58:46,745 INSTRUMENTAL IN SUCCESS OF ALL 5233 02:58:46,745 --> 02:58:47,812 THE NCLD MEETINGS. 5234 02:58:47,812 --> 02:58:48,947 THANK YOU, AND WITH THAT, THIS 5235 02:58:48,947 --> 02:58:49,481 MEETING ADJOURNS. 5236 02:58:49,481 --> 02:58:59,658 THANK YOU.