1
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THANK YOU 

2
00:00:05,873 --> 00:00:07,241
FOR JOINING US FOR THE FIRST OF 

3
00:00:07,241 --> 00:00:18,974
THE TWO VIRTUAL TOWN HALL.

4
00:00:18,974 --> 00:00:20,776
TODAY WE'LL ENGAGE WITH 

5
00:00:20,776 --> 00:00:21,677
ORGANIZATIONS THAT PROMOTE 

6
00:00:21,677 --> 00:00:25,514
EDUCATION, RESEARCH AND ADVOCACY

7
00:00:25,514 --> 00:00:30,119
FOR PEOPLE LIVING WITH 

8
00:00:30,119 --> 00:00:31,887
LYMPHEDEMA AND THOSE LIVING WITH

9
00:00:31,887 --> 00:00:33,222
THESE CONDITIONS.

10
00:00:33,222 --> 00:00:39,728
THEY'LL SHARE THEIR EXPERIENCES 

11
00:00:39,728 --> 00:00:42,564
AND HIGHLIGHTS SUPPORT AND I'M A

12
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PROGRAM AT THE NATIONAL HEART 

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00:00:44,600 --> 00:00:48,237
LUNG BLOOD INSTITUTE IN THE 

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00:00:48,237 --> 00:00:49,171
DIVISION OF CARDIOVASCULAR 

15
00:00:49,171 --> 00:00:50,939
SCIENCES AND THE EXECUTIVE 

16
00:00:50,939 --> 00:00:53,275
SECRETARY SERVING AS LIAISON 

17
00:00:53,275 --> 00:00:57,946
BETWEEN THE NCLD AND LEADERSHIP 

18
00:00:57,946 --> 00:01:00,349
AND SERVING THE SUPPORT 

19
00:01:00,349 --> 00:01:00,616
STRUCTURE.

20
00:01:00,616 --> 00:01:06,088
I'M GOING TO MAKE A FEW HAVE THE

21
00:01:06,088 --> 00:01:07,623
ADMINISTRATIVE ANNOUNCEMENTS 

22
00:01:07,623 --> 00:01:08,323
BEFORE WE START.

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00:01:08,323 --> 00:01:11,226
FIRST, I WANT TO WELCOME OUR 

24
00:01:11,226 --> 00:01:14,463
PUBLIC VISITORS AS WELL AS STAFF

25
00:01:14,463 --> 00:01:17,299
TO THIS BROADCAST BROUGHT BY NIH

26
00:01:17,299 --> 00:01:18,433
VIDEOCAST AND WE'RE LOOKING 

27
00:01:18,433 --> 00:01:23,772
FORWARD TO YOUR FEEDBACK.

28
00:01:23,772 --> 00:01:25,140
LISTENERS IN THE VIRTUAL 

29
00:01:25,140 --> 00:01:26,208
ENVIRONMENT CAN USE THE SEND 

30
00:01:26,208 --> 00:01:27,543
LIVE FEEDBACK BUTTON.

31
00:01:27,543 --> 00:01:30,612
ALL YOUR QUESTIONS AND FEEDBACK 

32
00:01:30,612 --> 00:01:33,015
WILL BE RECORDED AND TAKEN INTO 

33
00:01:33,015 --> 00:01:33,949
COMMISSION AFTER THE MEETING.

34
00:01:33,949 --> 00:01:36,785
THE MEETING IS BEING WEBCAST AND

35
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RECORDED.

36
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THE VIDEO WILL BE ARCHIVED AND 

37
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AVAILABLE FOR THE PUBLIC AND NIH

38
00:01:42,024 --> 00:01:45,694
COLLEAGUES FOR AN INDEFINITE 

39
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AMOUNT OF TIME.

40
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A BRIEF OVERVIEW OF THE AGENDA 

41
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IS STARTING WITH THE WELCOME 

42
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REMARKS BY THE NCLB CO-CHAIRS 

43
00:02:00,776 --> 00:02:03,712
STANLEY ROCKSON AND STEPHANIE 

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00:02:03,712 --> 00:02:08,083
DWYER  -- DREYER AND FOR THOSE 

45
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WHO SUBMITTED SLIDES SAY NEXT 

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SLIDE FOR THE AV TEAM TO ADVANCE

47
00:02:12,454 --> 00:02:13,021
YOUR SLIDES.

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AFTER THE PRESENTER FINISHES 

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PLEASE ANNOUNCE THE NEXT 

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PRESENTER FROM YOUR 

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ORGANIZATION.

52
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I WILL REMIND EVERYONE OF TIME 

53
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KEEPING.

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THE NCLB CORE CHAIR WILL LEAD 

55
00:02:27,135 --> 00:02:27,936
THE DISCUSSION AND THE MEETING 

56
00:02:27,936 --> 00:02:31,073
WILL ADJOURN WITH THE CLOSING 

57
00:02:31,073 --> 00:02:33,208
REMARKS BY THE CO-CHAIR 

58
00:02:33,208 --> 00:02:34,276
DR. ROCKSON.

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WE REQUEST EVERYONE IN ZOOM TO 

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TURN THEIR CAMERA ON WHEN 

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SPEAKING AND USE THE HAND RAISE 

62
00:02:42,718 --> 00:02:43,452
FUNCTION AND COMMUNICATION OF 

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CHAT WILL BE SAVED FOR THE 

64
00:02:44,987 --> 00:02:46,588
RECORD OF THE COMMISSION.

65
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WITH THAT IT'S MY PLEASURE TO 

66
00:02:48,924 --> 00:02:51,460
PASS THE MIKE TO DR. STANLEY 

67
00:02:51,460 --> 00:02:52,895
ROCKSON ONE OF THE CO-CHAIRS FOR

68
00:02:52,895 --> 00:02:53,295
WELCOMING REMARKS.

69
00:02:53,295 --> 00:03:03,405
STAN.

70
00:03:05,474 --> 00:03:07,576
>> THANK YOU AND WELCOME 

71
00:03:07,576 --> 00:03:09,044
EVERYONE TO THIS VERY IMPORTANT 

72
00:03:09,044 --> 00:03:13,015
MORNING WHICH REPRESENTS A 

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00:03:13,015 --> 00:03:14,816
SEMINOLE ASPECT OF THE WORK OF 

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00:03:14,816 --> 00:03:16,652
THE NATIONAL COMMISSION.

75
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I WANT TO UNDERSCORE THE NOTION 

76
00:03:21,123 --> 00:03:22,057
THAT THIS COMMISSION AND YOU'LL 

77
00:03:22,057 --> 00:03:25,727
HEAR ABOUT OUR CHARGE 

78
00:03:25,727 --> 00:03:26,695
MOMENTARILY, HAS BEEN DESIGN TO 

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SERVE THE NEEDS OF THE PEOPLE 

80
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AND ORGANIZATIONS REPRESENTED 

81
00:03:30,966 --> 00:03:31,266
HERE TODAY.

82
00:03:31,266 --> 00:03:33,135
IT'S VERY IMPORTANT FOR US TO 

83
00:03:33,135 --> 00:03:34,569
HEAR THE VOICE OF THE PATIENTS 

84
00:03:34,569 --> 00:03:37,205
WHO ARE AFFECTED BY LYMPHATIC 

85
00:03:37,205 --> 00:03:38,040
DISEASE AND BY THE ADVOCACY 

86
00:03:38,040 --> 00:03:44,746
GROUPS THAT REPRESENT THEM.

87
00:03:44,746 --> 00:03:50,752
IT'S THE FIRST OF TWO TOWN HALL 

88
00:03:50,752 --> 00:03:57,292
MEETINGS FIRST ON LYMPHEDEMA AND

89
00:03:57,292 --> 00:04:01,830
DEVOTED TO THE PROBLEMS OF 

90
00:04:01,830 --> 00:04:04,066
LYMPHATIC VASCULAR 

91
00:04:04,066 --> 00:04:04,599
MALFORMATIONS.

92
00:04:04,599 --> 00:04:06,802
SO WE'RE DELIGHTED YOU'RE HEAR 

93
00:04:06,802 --> 00:04:08,003
TO SHARE YOUR STORIES WITH US SO

94
00:04:08,003 --> 00:04:09,838
THIS CAN BE INTEGRATED WITH 

95
00:04:09,838 --> 00:04:11,139
EVERYTHING THAT WE HAVE BEEN 

96
00:04:11,139 --> 00:04:13,442
ACQUIRING DURING THE WORK OF 

97
00:04:13,442 --> 00:04:15,510
THIS COMMISSION IN ORDER TO 

98
00:04:15,510 --> 00:04:18,313
PROVIDE OUR FINAL REPORT TO THE 

99
00:04:18,313 --> 00:04:19,848
ADVISORY COUNCIL OF THE NATIONAL

100
00:04:19,848 --> 00:04:21,216
HEART, LUNG AND BLOOD INSTITUTE.

101
00:04:21,216 --> 00:04:31,660
THANK YOU FOR BEING HERE.

102
00:04:31,960 --> 00:04:34,062
WITH THAT I WILL MOVE AHEAD TO 

103
00:04:34,062 --> 00:04:36,565
TALK ABOUT THE NATIONAL 

104
00:04:36,565 --> 00:04:36,865
COMMISSION.

105
00:04:36,865 --> 00:04:42,304
THIS IS BY WAY OF OVERVIEW FOR 

106
00:04:42,304 --> 00:04:46,775
YOU TO UNDERSTAND THIS IS A 

107
00:04:46,775 --> 00:04:49,077
TRANSPARENT INCLUSIVE AND PUBLIC

108
00:04:49,077 --> 00:04:50,645
FORUM TO ASSESS CRITICAL 

109
00:04:50,645 --> 00:04:51,713
CHALLENGES, GATHER INPUT AS WE 

110
00:04:51,713 --> 00:04:54,182
ARE THIS MORNING FROM THE 

111
00:04:54,182 --> 00:04:55,617
DIVERSE SPECTRUM OF 

112
00:04:55,617 --> 00:04:57,652
STAKEHOLDERS, TO IDENTIFY THE 

113
00:04:57,652 --> 00:04:59,721
GAPS AND CHALLENGES THAT EXIST 

114
00:04:59,721 --> 00:05:03,158
IN PROVIDING THE APPROPRIATE 

115
00:05:03,158 --> 00:05:04,459
CARE, RESEARCH AND 

116
00:05:04,459 --> 00:05:07,095
INFRASTRUCTURE FOR LYMPHATIC 

117
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DISEASE AND TO PROVIDE 

118
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ACTIONABLE PROGRESS, UPDATES AND

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00:05:12,067 --> 00:05:13,435
FINAL REPORT TO THE NHLBI 

120
00:05:13,435 --> 00:05:18,573
ADVISORY COUNCIL.

121
00:05:18,573 --> 00:05:20,475
I WANT EVERYONE TO UNDERSTAND 

122
00:05:20,475 --> 00:05:22,477
THAT OUR COMMISSION, WHICH IS 

123
00:05:22,477 --> 00:05:24,846
COMPRISED OF 15 COMMISSIONERS 

124
00:05:24,846 --> 00:05:27,482
REPRESENTING A VARIETY OF 

125
00:05:27,482 --> 00:05:28,817
BACKGROUNDS AND EXPERTISE HAS 

126
00:05:28,817 --> 00:05:32,054
BEEN SUB DIVIDED INTO A SERIES 

127
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OF COMMITTEES THAT ARE DEVOTED 

128
00:05:33,822 --> 00:05:35,824
TO ADDRESSING EACH OF THE 

129
00:05:35,824 --> 00:05:37,959
INDIVIDUAL ELEMENTS THAT WE 

130
00:05:37,959 --> 00:05:41,196
THINK ARE IMPORTANT IN 

131
00:05:41,196 --> 00:05:43,365
UNDERSTANDING THE PROBLEM OF 

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LYMPHATIC DISEASE AND ITS 

133
00:05:43,932 --> 00:05:44,866
POTENTIAL SOLUTIONS.

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HERE YOU SEE THE COMMITTEES 

135
00:05:46,568 --> 00:05:49,204
LISTED WITH THE RELEVANT MEMBERS

136
00:05:49,204 --> 00:05:50,839
OF THE COMMISSION THAT SERVE IN 

137
00:05:50,839 --> 00:05:54,076
EACH OF THESE COMMITTEES.

138
00:05:54,076 --> 00:05:55,977
WE HAVE SCIENTIFIC ADVANCEMENT, 

139
00:05:55,977 --> 00:06:06,421
EDUCATIONAL IMPERATIVES, 

140
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MEASURABLE RESULTS AND GROWTH 

141
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AND TOOLS.

142
00:06:09,224 --> 00:06:11,493
>> WITH THAT WE CAN START.

143
00:06:11,493 --> 00:06:14,029
I CAN HELP WITH INTRODUCING 

144
00:06:14,029 --> 00:06:20,502
EVERYONE IF YOU GUYS LIKE IT.

145
00:06:20,502 --> 00:06:24,272
SO WE'LL START WITH THE 

146
00:06:24,272 --> 00:06:25,373
LYMPHOASSOCIATION OF NORTH 

147
00:06:25,373 --> 00:06:28,910
AMERICA AND DOCTORS KAREN BOCK 

148
00:06:28,910 --> 00:06:33,782
AND DAVID DOUBBLESTEIN WILL BE 

149
00:06:33,782 --> 00:06:37,586
SHARING THEIR VIEWS WITH US.

150
00:06:37,586 --> 00:06:40,989
KAREN AND DAVID, YOU'RE ON.

151
00:06:40,989 --> 00:06:42,057
>> THANK YOU SO MUCH TO
THE 

152
00:06:42,057 --> 00:06:42,824
COMMISSION FOR ASKING US TO 

153
00:06:42,824 --> 00:06:43,758
SPEAK TODAY.

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MY NAME IS KAREN BOCK.

155
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I'M AN ASSISTANT PROFESSOR AT 

156
00:06:53,201 --> 00:06:56,771
RUTGERS UNIVERSITY AND HERE IN 

157
00:06:56,771 --> 00:07:02,144
KANSAS CITY, MISSOURI.

158
00:07:02,144 --> 00:07:04,412
I'M REPRESENTING THE LYMPHOLOGY 

159
00:07:04,412 --> 00:07:05,780
ASSOCIATION OF NORTH AMERICA.

160
00:07:05,780 --> 00:07:06,948
THE MISSION IS TO PROVIDE 

161
00:07:06,948 --> 00:07:11,453
STANDARDS OF CERTIFICATIONS FOR 

162
00:07:11,453 --> 00:07:16,958
HEALTH CARE PROFESSIONALS 

163
00:07:16,958 --> 00:07:21,663
HELPING MANAGE LYMPHEDEMA AND 

164
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OUR ORGANIZATIONS WAS FOUNDED AS

165
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PART OF THE CHARGE FROM THE 

166
00:07:27,736 --> 00:07:30,472
AMERICAN CANCER SOCIETY 

167
00:07:30,472 --> 00:07:32,440
REALIZING PATIENTS WHO HAVE 

168
00:07:32,440 --> 00:07:33,175
LYMPHEDEMA WERE NOT GETTING THE 

169
00:07:33,175 --> 00:07:38,613
MOST ORGANIZED CARE AND NEEDED A

170
00:07:38,613 --> 00:07:41,950
NATIONAL CERTIFICATION EXAM FOR 

171
00:07:41,950 --> 00:07:45,253
THERAPISTS TO KNOW WHO HAS THE 

172
00:07:45,253 --> 00:07:48,290
KNOWLEDGE TO MANAGE LYMPHEDEMA.

173
00:07:48,290 --> 00:07:50,192
FROM OUR CHALLENGES AS FAR AS 

174
00:07:50,192 --> 00:07:52,627
THREE SIGNIFICANT CHALLENGES FOR

175
00:07:52,627 --> 00:07:54,563
OUR ORGANIZATION.

176
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REALLY, WHAT I WANTED TO START 

177
00:07:56,932 --> 00:07:59,100
WITH IS RESEARCH FOR CLINICAL 

178
00:07:59,100 --> 00:07:59,734
LEVEL QUESTIONS.

179
00:07:59,734 --> 00:08:02,170
OUR MEMBERS ARE ON THE GROUND 

180
00:08:02,170 --> 00:08:03,672
AND TREATING PATIENTS EVERYWHERE

181
00:08:03,672 --> 00:08:04,573
BUT WE DON'T HAVE A LOT OF 

182
00:08:04,573 --> 00:08:07,342
RESEARCH REGARDING CLINICAL 

183
00:08:07,342 --> 00:08:07,609
QUESTIONS.

184
00:08:07,609 --> 00:08:09,177
AN EXAMPLE IS MY DISSERTATION 

185
00:08:09,177 --> 00:08:11,279
WORK WAS OUT OF MY CLINICAL WORK

186
00:08:11,279 --> 00:08:12,847
BECAUSE I HAD PATIENTS ASKING ME

187
00:08:12,847 --> 00:08:15,817
WHY THEY NEEDED TO HAVE CERTAIN 

188
00:08:15,817 --> 00:08:18,019
BRANDS OF GARMENTS OR OF 

189
00:08:18,019 --> 00:08:22,224
NIGHTTIME GARMENTS TO WEAR AT 

190
00:08:22,224 --> 00:08:23,792
NIGHT TO MANAGE THEIR LYMPHEDEMA

191
00:08:23,792 --> 00:08:27,062
AND I HAD NO ANSWER I HAD TO 

192
00:08:27,062 --> 00:08:28,964
RESEARCH SAYING YOU'LL BE ABLE 

193
00:08:28,964 --> 00:08:31,466
TO SLEEP BETTER OR DO YOUR ADLs 

194
00:08:31,466 --> 00:08:34,135
BETTER AND LED TO MY 

195
00:08:34,135 --> 00:08:36,571
DISSERTATION RESEARCH TO EXAMINE

196
00:08:36,571 --> 00:08:39,741
WHAT SLEEP LOOKS LIKE IN 

197
00:08:39,741 --> 00:08:43,111
LYMPHEDEMA PATIENTS AND CERTAIN 

198
00:08:43,111 --> 00:08:43,845
INTERVENTIONS AND LOOKING AT 

199
00:08:43,845 --> 00:08:46,214
WHAT INTERVENTIONS ARE BEST FOR 

200
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CERTAIN CLIMATES OR CERTAIN WORK

201
00:08:48,550 --> 00:08:48,883
ENVIRONMENTS.

202
00:08:48,883 --> 00:08:50,352
WE DON'T HAVE THE ANSWER TO ANY 

203
00:08:50,352 --> 00:08:53,221
OF THOSE KINDS OF QUESTIONS AS 

204
00:08:53,221 --> 00:08:53,521
CLINICIANS.

205
00:08:53,521 --> 00:08:54,389
SECOND CHALLENGES FOR OUR 

206
00:08:54,389 --> 00:08:57,225
MEMBERS ARE THE VALUE FOR HEALTH

207
00:08:57,225 --> 00:08:58,226
SYSTEMS AND PROVIDER TRAINING 

208
00:08:58,226 --> 00:09:04,833
AND REIMBURSEMENT.

209
00:09:04,833 --> 00:09:07,769
U.S.-BASED LYMPHATIC TRAINING AT

210
00:09:07,769 --> 00:09:09,004
LEAST 135 HOURS OF CONTINUING 

211
00:09:09,004 --> 00:09:10,639
EDUCATION AND THAT'S AN 

212
00:09:10,639 --> 00:09:11,940
INVESTMENT FROM HEALTH SYSTEM 

213
00:09:11,940 --> 00:09:12,907
STANDPOINT.

214
00:09:12,907 --> 00:09:14,242
THE CLINICIANS OFTEN HAVE TO BE 

215
00:09:14,242 --> 00:09:16,878
AWAY A WEEK AT A TIME TO GO ON 

216
00:09:16,878 --> 00:09:18,880
TRAINING AND THEN THE 

217
00:09:18,880 --> 00:09:20,782
REIMBURSEMENT IS ONLY CONTINUING

218
00:09:20,782 --> 00:09:26,821
TO DECLINE FROM A THERAPIST'S 

219
00:09:26,821 --> 00:09:32,694
STANDPOINT THERE'S LITTLE RETURN

220
00:09:32,694 --> 00:09:33,395
ON THE INVESTMENT BECAUSE THEY 

221
00:09:33,395 --> 00:09:35,830
TAKE MAINTENANCE AND MONEY.

222
00:09:35,830 --> 00:09:36,698
THOSE IN THE HEALTH FIELD 

223
00:09:36,698 --> 00:09:38,466
UNDERSTAND BY INVESTING IN THESE

224
00:09:38,466 --> 00:09:39,968
SYSTEMS WE'RE PREVENTING 

225
00:09:39,968 --> 00:09:41,369
PATIENTS FROM GETTING IN THE 

226
00:09:41,369 --> 00:09:50,045
HOSPITAL FOR CELLULITEIS AND 

227
00:09:50,045 --> 00:09:52,247
TURNS INTO SEPSIS AND THE 

228
00:09:52,247 --> 00:09:53,815
PREVENTIVE MAINTENANCE OF DOLLAR

229
00:09:53,815 --> 00:10:04,259
SAVING IS HARD TO CAPTURE.

230
00:10:06,728 --> 00:10:11,032
AND WE HAVE SCALES FREQUENT IN 

231
00:10:11,032 --> 00:10:12,367
SURVEILLANCE BUT DON'T HAVE 

232
00:10:12,367 --> 00:10:13,668
INFRARED TECHNOLOGY ALL THE 

233
00:10:13,668 --> 00:10:14,102
TIMES.

234
00:10:14,102 --> 00:10:16,571
THE TOOLS ARE IN HIGH LEVEL 

235
00:10:16,571 --> 00:10:17,972
MEDICAL CENTERS WHERE THEY HAVE 

236
00:10:17,972 --> 00:10:20,508
THE MEDICAL EQUIPMENT TO DO 

237
00:10:20,508 --> 00:10:21,209
THAT.

238
00:10:21,209 --> 00:10:23,478
MOST THERAPISTS DO NOT GET AN 

239
00:10:23,478 --> 00:10:27,015
ICG READ OUT ARE WHERE THE BACK 

240
00:10:27,015 --> 00:10:28,917
FLOW IS IN PATIENTS AND AMAZING 

241
00:10:28,917 --> 00:10:30,285
AT TREATING PATIENTS WITHOUT 

242
00:10:30,285 --> 00:10:31,486
THAT KNOWLEDGE AND IF YOU HAVE 

243
00:10:31,486 --> 00:10:32,954
THAT THINK ABOUT THE AMOUNT OF 

244
00:10:32,954 --> 00:10:35,357
VISITS WE MAY BE ABLE TO SAVE 

245
00:10:35,357 --> 00:10:36,858
FOR PATIENTS AND GET THEM BETTER

246
00:10:36,858 --> 00:10:38,326
QUICKER IF WE HAD THE KNOWLEDGE 

247
00:10:38,326 --> 00:10:44,232
AT OUR FINGER TIPS ALL THE TIME.

248
00:10:44,232 --> 00:10:45,800
THAT'S AN EXAMPLE OF WHERE WE 

249
00:10:45,800 --> 00:10:49,204
CAN HAVE IMPROVEMENT IN OUR 

250
00:10:49,204 --> 00:10:56,544
SYSTEMS.

251
00:10:56,544 --> 00:10:58,146
THE ELECTRONIC HEALTH RECORD 

252
00:10:58,146 --> 00:10:58,546
DISCONNECT.

253
00:10:58,546 --> 00:11:01,316
OUR CLINICIANS ARE STILL WASTING

254
00:11:01,316 --> 00:11:01,983
VALUABLE TIME TRYING TO 

255
00:11:01,983 --> 00:11:04,586
DETERMINE PROCEDURES AND 

256
00:11:04,586 --> 00:11:05,220
TREATMENTS AND PERTINENT 

257
00:11:05,220 --> 00:11:06,955
INFORMATION THEIR PATIENTS HAVE 

258
00:11:06,955 --> 00:11:09,290
HAD THOUGH THE ELECTRONIC HEALTH

259
00:11:09,290 --> 00:11:11,659
RECORD IS OFTEN WELL AND ROBUST 

260
00:11:11,659 --> 00:11:12,394
WITHIN ONE HEALTH SYSTEM, IF YOU

261
00:11:12,394 --> 00:11:15,430
HAD TO STEP OUT OF YOUR HEALTH 

262
00:11:15,430 --> 00:11:16,664
SYSTEM THEY DON'T INTEGRATE VERY

263
00:11:16,664 --> 00:11:19,300
WELL AND SOMETIMES CLUNKY, IF AT

264
00:11:19,300 --> 00:11:19,467
ALL.

265
00:11:19,467 --> 00:11:21,436
OUR MEMBER THERAPISTS ARE TRYING

266
00:11:21,436 --> 00:11:22,937
TO FIND PERTINENT, CRITICAL 

267
00:11:22,937 --> 00:11:24,239
INFORMATION ABOUT THEIR PATIENTS

268
00:11:24,239 --> 00:11:27,208
AND IT'S TAKING TIME TO DO THAT.

269
00:11:27,208 --> 00:11:29,511
AND THAT REALLY BOILS DOWN TO 

270
00:11:29,511 --> 00:11:31,579
OUR THERAPISTS DON'T HAVE ENOUGH

271
00:11:31,579 --> 00:11:33,214
TIME FOR PATIENTS MUCH LESS TIME

272
00:11:33,214 --> 00:11:35,483
TO WORK WITH THE MEDICAL RECORD.

273
00:11:35,483 --> 00:11:37,585
AN EXAMPLE IS A COLLEAGUE OF 

274
00:11:37,585 --> 00:11:39,954
MINE WORKS IN A FAIRLY POPULATED

275
00:11:39,954 --> 00:11:42,457
URBAN AREA ON THE EAST COAST AND

276
00:11:42,457 --> 00:11:46,294
STILL ONE OF A HANDFUL OF 

277
00:11:46,294 --> 00:11:48,163
THERAPISTS FOR HER 30 TO 45 MILE

278
00:11:48,163 --> 00:11:50,398
RADIUS AND THERE'S A TWO TO 

279
00:11:50,398 --> 00:11:51,633
THREE MONTH WAIT FOR HER 

280
00:11:51,633 --> 00:11:55,036
PATIENTS TO GET AN EVALUATION 

281
00:11:55,036 --> 00:11:59,374
FOR THEIR LYMPHEDEMA MUCH LESS 

282
00:11:59,374 --> 00:12:01,209
THERAPISTS SERVING A MORE RURAL 

283
00:12:01,209 --> 00:12:04,345
OR CRITICAL ACCESS HOSPITAL 

284
00:12:04,345 --> 00:12:04,746
SITUATION.

285
00:12:04,746 --> 00:12:06,948
SO, THOUGH THE TRAINING IS 

286
00:12:06,948 --> 00:12:09,017
CUMBERSOME AND NEED TO INVEST WE

287
00:12:09,017 --> 00:12:10,118
STILL NEED MORE THERAPISTS AND 

288
00:12:10,118 --> 00:12:12,086
MORE ACCESS FOR PATIENTS.

289
00:12:12,086 --> 00:12:16,157
AND THEN AS WE THINK ABOUT THE 

290
00:12:16,157 --> 00:12:18,059
AVAILABILITY OF SUPPLIES AND 

291
00:12:18,059 --> 00:12:18,827
GARMENTS, I WANT EVERYBODY TO 

292
00:12:18,827 --> 00:12:20,695
PAUSE FOR A MOMENT IF YOU CAN, 

293
00:12:20,695 --> 00:12:24,466
THINK ABOUT THE LAST TIME YOU 

294
00:12:24,466 --> 00:12:26,000
VISITED A PROVIDER OR CHILD 

295
00:12:26,000 --> 00:12:30,104
FAMILY MEMBER WHO VISITED YOUR 

296
00:12:30,104 --> 00:12:38,146
HEALTH CARE PROVIDER OR P.A. OR 

297
00:12:38,146 --> 00:12:41,549
APRN AND PROVIDED A PRESCRIPTION

298
00:12:41,549 --> 00:12:45,453
AND IT WAS ELECTRONICALLY 

299
00:12:45,453 --> 00:12:46,988
TRANSMITTED TO THE PHARMACY 

300
00:12:46,988 --> 00:12:48,756
CLOSE TO YOU AND YOU PICKED IT 

301
00:12:48,756 --> 00:12:49,557
UP AND IF YOU HAD NEW DRUG 

302
00:12:49,557 --> 00:12:51,192
COVERAGE YOU HANDED IT TO THE 

303
00:12:51,192 --> 00:12:53,194
PHARMACIST AND DETERMINED YOUR 

304
00:12:53,194 --> 00:12:55,363
CO-PAY AND WERE ABLE STILL ABLE 

305
00:12:55,363 --> 00:12:57,765
TO PICK UP YOUR MEDICINE THAT 

306
00:12:57,765 --> 00:12:58,233
DAY.

307
00:12:58,233 --> 00:13:00,101
THIS EASE OF THE INTERVENTION 

308
00:13:00,101 --> 00:13:02,270
DOES NOT EXIST IN THE LIX DENA 

309
00:13:02,270 --> 00:13:08,843
IT -- LYMPHEDEMA THERAPY AT THIS

310
00:13:08,843 --> 00:13:09,410
TIME.

311
00:13:09,410 --> 00:13:12,080
THE THERAPIST AND PATIENT DECIDE

312
00:13:12,080 --> 00:13:13,848
COURSE OF TREATMENT AND WHAT 

313
00:13:13,848 --> 00:13:16,017
FINAL INTERVENTION WILL WORK THE

314
00:13:16,017 --> 00:13:16,417
BEST.

315
00:13:16,417 --> 00:13:18,086
THE THERAPIST FREQUENTLY HAS TO 

316
00:13:18,086 --> 00:13:20,255
GO BACK TO THE PROVIDER TO GET A

317
00:13:20,255 --> 00:13:21,656
PRESCRIPTION FOR THE GARMENT AND

318
00:13:21,656 --> 00:13:23,525
THEN SEND THE PRESCRIPTION 

319
00:13:23,525 --> 00:13:24,826
LIKELY TO A NATIONAL PROVIDER.

320
00:13:24,826 --> 00:13:28,963
THERE'S NOT USUALLY A LOCAL 

321
00:13:28,963 --> 00:13:32,133
EQUIPMENT PROVIDER IN YOUR CITY 

322
00:13:32,133 --> 00:13:33,902
OR STATE OR IN NETWORK FOR YOUR 

323
00:13:33,902 --> 00:13:35,303
INSURANCE AND ALL THAT WILL TAKE

324
00:13:35,303 --> 00:13:36,404
TWO TO THREE WEEKS, SOMETIMES 

325
00:13:36,404 --> 00:13:38,706
BEFORE YOU KNOW THE CO-PAY AND 

326
00:13:38,706 --> 00:13:39,908
THEN MAYBE ANOTHER TWO TO THREE 

327
00:13:39,908 --> 00:13:41,676
WEEKS TO ACTUALLY GET THE 

328
00:13:41,676 --> 00:13:42,010
INTERVENTION.

329
00:13:42,010 --> 00:13:43,678
IT'S QUITE A DIFFERENT SET UP 

330
00:13:43,678 --> 00:13:45,113
THAN JUST WHAT WE HAVE FOR 

331
00:13:45,113 --> 00:13:46,748
PRESCRIPTION DRUGS RIGHT NOW AND

332
00:13:46,748 --> 00:13:49,884
IT'S SLOWING DOWN PATIENT CARE 

333
00:13:49,884 --> 00:13:51,152
AND SLOWING DOWN PATIENTS 

334
00:13:51,152 --> 00:13:52,854
ABILITY TO CONTINUE ON WITH 

335
00:13:52,854 --> 00:13:53,955
THEIR LIVES.

336
00:13:53,955 --> 00:13:56,591
SO THOSE ARE OUR CHALLENGES FROM

337
00:13:56,591 --> 00:14:04,732
A LYMPHEDEMA STANDPOINT.

338
00:14:04,732 --> 00:14:07,302
SO OUR TOP THREE WISHES THAT 

339
00:14:07,302 --> 00:14:08,670
MIGHT IMPROVE THE LIVES OF THE 

340
00:14:08,670 --> 00:14:10,605
CLINICIANS AND PATIENTS THAT WE 

341
00:14:10,605 --> 00:14:11,472
SERVE WOULD BE TO HAVE RESEARCH 

342
00:14:11,472 --> 00:14:12,974
TO DIRECT US TO THE MOST 

343
00:14:12,974 --> 00:14:14,542
EFFICIENT TREATMENTS.

344
00:14:14,542 --> 00:14:16,978
I WOULD LIKE RESEARCH AND OUR 

345
00:14:16,978 --> 00:14:18,079
COMMUNITY WOULD BENEFIT FROM 

346
00:14:18,079 --> 00:14:19,347
RESEARCH THAT TELLS US WHICH 

347
00:14:19,347 --> 00:14:22,016
CLINICAL INTERVENTIONS TO USE 

348
00:14:22,016 --> 00:14:22,550
FIRST.

349
00:14:22,550 --> 00:14:24,152
WE HAVE RESEARCH BROADLY ON 

350
00:14:24,152 --> 00:14:25,587
WHICH INTERVENTIONS ARE 

351
00:14:25,587 --> 00:14:27,755
EFFICIENT BUT STILL DON'T HAVE 

352
00:14:27,755 --> 00:14:30,191
THEM TARGETED OR I'M ASSESSING 

353
00:14:30,191 --> 00:14:31,826
YOUR PROFILE AND KNOW IF WE 

354
00:14:31,826 --> 00:14:32,393
START HERE WE'LL GET THERE 

355
00:14:32,393 --> 00:14:38,266
QUICKER.

356
00:14:38,266 --> 00:14:39,734
WE'RE MISSING THE ABILITY OF THE

357
00:14:39,734 --> 00:14:42,704
RECORDS TO BE INTEGRATED BETWEEN

358
00:14:42,704 --> 00:14:43,471
HEALTH SYSTEMS.

359
00:14:43,471 --> 00:14:47,041
THERE'S NOT LYMPHEDEMA THERAPIST

360
00:14:47,041 --> 00:14:48,343
IN EVERY HEALTH SYSTEM BASED ON 

361
00:14:48,343 --> 00:14:50,011
THE BARRIERS AND WE NEED TO 

362
00:14:50,011 --> 00:14:52,513
QUICKLY UNDERSTAND WHAT PATIENTS

363
00:14:52,513 --> 00:14:56,017
HAVE BEEN GOING THROUGH AND WHAT

364
00:14:56,017 --> 00:14:56,818
THEY'VE HAD.

365
00:14:56,818 --> 00:14:58,152
AS WE THINK ABOUT THE USE OF 

366
00:14:58,152 --> 00:15:02,557
GRANT MONEY FOR CLINICAL AND 

367
00:15:02,557 --> 00:15:03,191
OUTCOMES BASED RESEARCH THAT 

368
00:15:03,191 --> 00:15:05,193
FUNDS RESEARCH THAT WILL 

369
00:15:05,193 --> 00:15:07,362
DIRECTLY IMPROVE PATIENT'S 

370
00:15:07,362 --> 00:15:09,197
LIVES, HOW FUNCTIONAL ARE 

371
00:15:09,197 --> 00:15:10,231
PATIENTS IN COMPRESSION 

372
00:15:10,231 --> 00:15:12,400
GARMENTS, WHICH SHOULD I TRY 

373
00:15:12,400 --> 00:15:14,235
FIRST BEFORE I HAVE TO GO 

374
00:15:14,235 --> 00:15:17,405
THROUGH ABCD WHICH IS MOST 

375
00:15:17,405 --> 00:15:19,007
HELPFUL FOR PATIENTS ARE MY TOP 

376
00:15:19,007 --> 00:15:20,375
THREE WISHES TO WHY IMPROVE THE 

377
00:15:20,375 --> 00:15:20,908
LIVES OF CLINICIANS AND 

378
00:15:20,908 --> 00:15:22,677
PATIENTS.

379
00:15:22,677 --> 00:15:24,779
AND I'M GOING TO TURN IT OVER TO

380
00:15:24,779 --> 00:15:29,217
MY COLLEAGUE, DAVID 

381
00:15:29,217 --> 00:15:29,817
DOUBBLESTEIN.

382
00:15:29,817 --> 00:15:33,688
HE IS THE VICE PRESIDENT OF LANA

383
00:15:33,688 --> 00:15:35,356
AND HAS MORE INFORMATION HE 

384
00:15:35,356 --> 00:15:37,158
WANTED TO DISCUSSION REGARDING 

385
00:15:37,158 --> 00:15:38,693
WHAT OUR MEMBERS OF OUR 

386
00:15:38,693 --> 00:15:49,203
ORGANIZATION ARE LOOKING FOR.

387
00:15:49,203 --> 00:15:53,207
>> I'M THE ASSOCIATE
PROFESSOR 

388
00:15:53,207 --> 00:15:57,211
IN THE PHYSICAL THERAPY PROGRAM 

389
00:15:57,211 --> 00:16:01,215
IN MESA, ARIZONA.

390
00:16:01,215 --> 00:16:03,618
I'M THE VICE PRESIDENT OF THE 

391
00:16:03,618 --> 00:16:13,194
LYMPHOLOGY SOCCER ASSOCIATION OF

392
00:16:13,194 --> 00:16:14,028
NORTH AMERICA.

393
00:16:14,028 --> 00:16:16,030
I HAVE EXPERIENCE LIKE KAREN HAS

394
00:16:16,030 --> 00:16:16,631
AND MY PRESENTATION SHOULD 

395
00:16:16,631 --> 00:16:22,937
DOVETAIL WELL ON WHAT SHE HAS 

396
00:16:22,937 --> 00:16:28,876
ALREADY PRESENTED TO YOU SO THE 

397
00:16:28,876 --> 00:16:36,384
MOST SIGNIFICANT CHALLENGES BY 

398
00:16:36,384 --> 00:16:39,954
PATIENTS FACING LYMPHEDEMA IS 

399
00:16:39,954 --> 00:16:44,392
FINDING PHYSICIANS WITH SKILL 

400
00:16:44,392 --> 00:16:48,062
SET TO ASSESS AND DIAGNOSIS 

401
00:16:48,062 --> 00:16:50,064
LYMPHEDEMA AND PROVIDE GOLD 

402
00:16:50,064 --> 00:16:51,632
STANDARD INTERVENTIONS FOR 

403
00:16:51,632 --> 00:16:52,600
LYMPHEDEMA.

404
00:16:52,600 --> 00:16:55,536
TO DIG IN FURTHER, AS FAR AS THE

405
00:16:55,536 --> 00:16:56,771
ASSESSMENT IN DIAGNOSING AND 

406
00:16:56,771 --> 00:16:58,206
FINDING PHYSICIANS AND 

407
00:16:58,206 --> 00:16:59,774
THERAPISTS WITH THOSE SKILL 

408
00:16:59,774 --> 00:17:00,675
SETS, THERE'S REALLY PART OF THE

409
00:17:00,675 --> 00:17:03,578
REASON WHY THAT IS IS BECAUSE WE

410
00:17:03,578 --> 00:17:05,046
HAVE A LACK OF RESEARCH AND 

411
00:17:05,046 --> 00:17:07,715
IMPLEMENTATION OF POORER OUTCOME

412
00:17:07,715 --> 00:17:11,385
SET FOR LYMPHEDEMA.

413
00:17:11,385 --> 00:17:12,720
IF YOU'RE IN THE FAMILIAR 

414
00:17:12,720 --> 00:17:14,622
THERE'S A STANDARDIZED 

415
00:17:14,622 --> 00:17:16,124
COLLECTION OF PATIENT OUTCOME 

416
00:17:16,124 --> 00:17:17,191
DOMAINS AND THOSE ARE ESSENTIAL 

417
00:17:17,191 --> 00:17:18,926
TO BE COLLECTED NOT ONLY IN THE 

418
00:17:18,926 --> 00:17:21,529
CLINIC BUT ALSO IN CLINICAL 

419
00:17:21,529 --> 00:17:24,298
TRIALS FOR LYMPHEDEMA.

420
00:17:24,298 --> 00:17:27,168
WHAT THAT DOES IS BRINGS A 

421
00:17:27,168 --> 00:17:29,003
STANDARDIZATION OF LANGUAGE 

422
00:17:29,003 --> 00:17:32,874
ACROSS INTERDISCIPLINARY FIELD 

423
00:17:32,874 --> 00:17:35,409
OR INTERDISCIPLINARY 

424
00:17:35,409 --> 00:17:36,911
PRACTITIONERS.

425
00:17:36,911 --> 00:17:38,980
THE OTHER THING A CORE OUTCOME 

426
00:17:38,980 --> 00:17:46,354
SET CAN DO IS ASSIST IN 

427
00:17:46,354 --> 00:17:49,223
EXAMINATION OF A DISORDER AND 

428
00:17:49,223 --> 00:17:52,827
UNDERSTANDING THE COMORBIDITIES.

429
00:17:52,827 --> 00:17:54,796
OTHER THING THE CORE OUTCOME 

430
00:17:54,796 --> 00:17:58,232
DOES IS PROVIDED INTERVENTION 

431
00:17:58,232 --> 00:18:03,404
EFFICACY SO WE KNOW THE 

432
00:18:03,404 --> 00:18:04,972
INTERVENTIONS ARE EFFICIENT AND 

433
00:18:04,972 --> 00:18:07,108
EFFECTIVE IN SAYING WHAT THEY'LL

434
00:18:07,108 --> 00:18:11,012
DO AND REDUCING SELECTIVE 

435
00:18:11,012 --> 00:18:13,681
REPORTING WE DO IN OUR 

436
00:18:13,681 --> 00:18:15,650
ELECTRONIC MEDICAL RECORDS AND 

437
00:18:15,650 --> 00:18:17,552
VARIABILITY IN THE REPORTING WE 

438
00:18:17,552 --> 00:18:20,021
SEE OFTEN TIMES IN 

439
00:18:20,021 --> 00:18:21,189
INTERDISCIPLINARY HEALTH CARE 

440
00:18:21,189 --> 00:18:21,422
FIELDS.

441
00:18:21,422 --> 00:18:22,924
WE WANT TO MAKE SURE THERE'S A 

442
00:18:22,924 --> 00:18:23,791
CONSISTENCY.

443
00:18:23,791 --> 00:18:27,628
IN DOING SO WE CAN HAVE THIS 

444
00:18:27,628 --> 00:18:29,197
RESEARCH DATABASE WHERE WE ALL 

445
00:18:29,197 --> 00:18:31,599
ARE SPEAKING THE SAME LANGUAGE 

446
00:18:31,599 --> 00:18:33,167
BECAUSE THERE'S SO MANY PEOPLE 

447
00:18:33,167 --> 00:18:36,337
THAT DIAGNOSE AND TREAT AND 

448
00:18:36,337 --> 00:18:37,905
INTERVENE IN LYMPHEDEMA.

449
00:18:37,905 --> 00:18:41,876
SO MANY FIELDS THAT DO THAT AND 

450
00:18:41,876 --> 00:18:43,811
IF WE HAVE ONE UNIFIED CORE 

451
00:18:43,811 --> 00:18:45,079
OUTCOME SET IT WOULD BE HELPFUL 

452
00:18:45,079 --> 00:18:46,380
FOR US ALL.

453
00:18:46,380 --> 00:18:47,582
IN ADDITION WHEN WE THINK ABOUT 

454
00:18:47,582 --> 00:18:49,217
THE OUTCOME SET WE HAVE LIMITED 

455
00:18:49,217 --> 00:18:51,519
ACCESS TO A CORSET OF OUTCOME 

456
00:18:51,519 --> 00:18:53,187
MEASURES ACROSS THE CONTINUUM OF

457
00:18:53,187 --> 00:18:53,387
CARE.

458
00:18:53,387 --> 00:18:55,156
THOSE ARE THE INSTRUMENTS THAT 

459
00:18:55,156 --> 00:19:02,697
MEASURE THE CORE OUTCOME SET.

460
00:19:02,697 --> 00:19:06,868
AND WITH PROVIDING A SET OF 

461
00:19:06,868 --> 00:19:10,438
LYMPHEDEMA THERE'S A RANGE OF 

462
00:19:10,438 --> 00:19:11,505
DEPTH FROM 30 MINUTES TO THREE 

463
00:19:11,505 --> 00:19:11,873
HOURS.

464
00:19:11,873 --> 00:19:13,374
WE DON'T HAVE A GOOD 

465
00:19:13,374 --> 00:19:17,478
CREDENTIALING FOR PEOPLE WHEN 

466
00:19:17,478 --> 00:19:19,814
CALL THEMSELVES LYMPHOLOGISTS WE

467
00:19:19,814 --> 00:19:23,217
CAN USE SOMETHING LIKE THAT SO 

468
00:19:23,217 --> 00:19:24,819
PATIENTS CAN FIND ONE.

469
00:19:24,819 --> 00:19:27,188
THERE'S ALSO A LACK OF SUPPORT 

470
00:19:27,188 --> 00:19:31,092
OR INTERESTING IN BECOMING A 

471
00:19:31,092 --> 00:19:32,193
CERTIFIED LYMPHEDEMA THERAPIST 

472
00:19:32,193 --> 00:19:39,734
AND PART IS FINANCIAL 

473
00:19:39,734 --> 00:19:48,342
RESTRICTIONS.

474
00:19:48,342 --> 00:19:49,744
AND FINDING THERAPISTS THAT 

475
00:19:49,744 --> 00:19:52,480
PROVIDE GOLD STANDARD 

476
00:19:52,480 --> 00:19:54,348
INTERVENTIONS OF LYMPHEDEMA.

477
00:19:54,348 --> 00:19:56,450
THERE'S MORE RECENT RESEARCH 

478
00:19:56,450 --> 00:19:59,754
DRAWING US AWAY FROM THE 

479
00:19:59,754 --> 00:20:01,522
MULTILAYERING EXERCISE AND 

480
00:20:01,522 --> 00:20:05,192
INTERVENTIONS AND GOING BACK TO 

481
00:20:05,192 --> 00:20:05,927
GARMENTS AND EXPRESSION AND 

482
00:20:05,927 --> 00:20:07,795
EXPRESSION ALTERNATIVES.

483
00:20:07,795 --> 00:20:11,198
SO WE NEED TO BE CAREFUL WITH 

484
00:20:11,198 --> 00:20:13,434
THAT AS WELL AS REIMBURSEMENT 

485
00:20:13,434 --> 00:20:17,071
MODELS PREVENTING DOSAGE FOR THE

486
00:20:17,071 --> 00:20:17,271
PHASE.

487
00:20:17,271 --> 00:20:18,906
UNFORTUNATELY IN THE THERAPY 

488
00:20:18,906 --> 00:20:21,776
WHELM OF WHAT WE'RE SEEING HERE 

489
00:20:21,776 --> 00:20:23,444
IS THERAPISTS PROVIDING 

490
00:20:23,444 --> 00:20:25,212
TREATMENT ONLY MAYBE TWO DAYS A 

491
00:20:25,212 --> 00:20:27,014
WEEK, THREE DAYS AT THE MOST.

492
00:20:27,014 --> 00:20:32,286
AND THAT'S NOT WHAT WE WOULD 

493
00:20:32,286 --> 00:20:33,220
CONSIDER PROPER TREATMENT FOR 

494
00:20:33,220 --> 00:20:33,955
LYMPHEDEMA DURING THE INTENSIVE 

495
00:20:33,955 --> 00:20:38,492
PHASE.

496
00:20:38,492 --> 00:20:41,028
SO WHEN WE ARE THINKING ABOUT 

497
00:20:41,028 --> 00:20:44,999
THE MAJOR RESOURCE CHALLENGES WE

498
00:20:44,999 --> 00:20:46,667
HAVE HERE THAT OUR CONSTITUENTS 

499
00:20:46,667 --> 00:20:49,570
ENCOUNTER IS THE LACK OF 

500
00:20:49,570 --> 00:20:51,138
AFFORDABLE TECHNOLOGY FOR 

501
00:20:51,138 --> 00:20:52,506
CLINICS AND RURAL HEALTH CARE 

502
00:20:52,506 --> 00:20:58,412
SETTINGS AND PRECISION 

503
00:20:58,412 --> 00:21:03,851
VOLUMETRIC MEASURES AND 3-D 

504
00:21:03,851 --> 00:21:10,958
IMAGERY OR PEROMETRY AND THERE'S

505
00:21:10,958 --> 00:21:14,628
NO MEASURES FOR FIBROSIS OR 

506
00:21:14,628 --> 00:21:16,430
ADIPOSITY AND AS THE ALIGN WITH 

507
00:21:16,430 --> 00:21:16,797
CLASSIFICATION.

508
00:21:16,797 --> 00:21:21,235
WE NEED TO HAVE A GOOD 

509
00:21:21,235 --> 00:21:22,603
QUANTITATIVE MEASURE OF SOFT 

510
00:21:22,603 --> 00:21:24,705
TISSUE AND SOMETHING AFFORDABLE 

511
00:21:24,705 --> 00:21:25,906
FOR CLINICIANS AND OUT PATIENT 

512
00:21:25,906 --> 00:21:26,774
SETTINGS ESPECIALLY IN RURAL 

513
00:21:26,774 --> 00:21:29,643
SETTINGS.

514
00:21:29,643 --> 00:21:32,046
IN ADDITION THERE'S A LACK OF 

515
00:21:32,046 --> 00:21:33,014
CONTENT WITH PROPER EDUCATION 

516
00:21:33,014 --> 00:21:35,483
AND SKILL SETS AS I HAVE ALREADY

517
00:21:35,483 --> 00:21:36,784
DISCUSSED PREVIOUSLY.

518
00:21:36,784 --> 00:21:41,022
AND MY CONCERN IS THE ISOLATION 

519
00:21:41,022 --> 00:21:44,325
OF INTERDISCIPLINARY LYMPHEDEMA 

520
00:21:44,325 --> 00:21:44,925
SPECIALISTS.

521
00:21:44,925 --> 00:21:46,961
IT MAKES THE REFERRAL PROCESS 

522
00:21:46,961 --> 00:21:48,496
CONFUSING AND LIMITS PROVIDERS 

523
00:21:48,496 --> 00:21:50,798
TO RURAL REGIONS AND TO THE 

524
00:21:50,798 --> 00:21:52,967
MARGINALIZED COMMUNITIES.

525
00:21:52,967 --> 00:21:54,068
WE SOMEWHERE TO THINK BEYOND 

526
00:21:54,068 --> 00:21:55,603
WHAT WE CAN PROVIDE IN THE CITY 

527
00:21:55,603 --> 00:21:58,239
AND URBAN AREAS AND THINK OF 

528
00:21:58,239 --> 00:21:58,873
MARGINALIZED COMMUNITIES HOW TO 

529
00:21:58,873 --> 00:22:01,675
GET THERAPISTS OUT THERE AND HOW

530
00:22:01,675 --> 00:22:06,080
CAN WE GET THE TECHNOLOGY OUT 

531
00:22:06,080 --> 00:22:08,449
THERE FOR PROPER SURVEILLANCE.

532
00:22:08,449 --> 00:22:09,250
WITH THAT WHEN THE WHOLE 

533
00:22:09,250 --> 00:22:11,519
DISCUSSION STARTED, I WAS 

534
00:22:11,519 --> 00:22:15,656
INTERESTED IN LOOKING AT THE 

535
00:22:15,656 --> 00:22:17,491
NCLD AS FAR AS WHO WAS SITTING 

536
00:22:17,491 --> 00:22:22,663
ON THE COMMITTEE AND I DIDN'T 

537
00:22:22,663 --> 00:22:23,431
RECOGNIZE PEOPLE ON THE 

538
00:22:23,431 --> 00:22:28,769
COMMITTEE AND WHEN WE THINK OF 

539
00:22:28,769 --> 00:22:29,570
LYMPHEDEMA SPECIALISTS I THINK 

540
00:22:29,570 --> 00:22:31,572
IT'S IMPORTANT WE'RE ALWAYS 

541
00:22:31,572 --> 00:22:33,441
WORKING TOGETHER.

542
00:22:33,441 --> 00:22:39,213
GETTING R.N.s AND P.T.s AND 

543
00:22:39,213 --> 00:22:44,318
O.T.s TO HAVE A UNIFIED FRONT 

544
00:22:44,318 --> 00:22:45,219
FOR LYMPHEDEMA DIAGNOSIS, 

545
00:22:45,219 --> 00:22:52,793
TREATMENT AND RESEARCH.

546
00:22:52,793 --> 00:22:54,862
SO OUR TOP THREE WISHES TO 

547
00:22:54,862 --> 00:22:57,565
IMPROVE THE LIVES OF PEOPLE WITH

548
00:22:57,565 --> 00:22:58,399
LYMPHEDEMA.

549
00:22:58,399 --> 00:23:03,370
GRANT FUNDING FOR BIO IMPEDENCE 

550
00:23:03,370 --> 00:23:08,075
OR TDC IN RURAL SETTINGS AND 

551
00:23:08,075 --> 00:23:09,310
MARGINALIZED COMMUNITIES AND 

552
00:23:09,310 --> 00:23:11,779
SCHOLARSHIPS FOR THOSE WHO HAVE 

553
00:23:11,779 --> 00:23:14,048
AN INTEREST IN TREATING 

554
00:23:14,048 --> 00:23:18,319
LYMPHEDEMA FOR CLT COURSES IN 

555
00:23:18,319 --> 00:23:24,091
LANA CERTIFICATION AND SMALL 

556
00:23:24,091 --> 00:23:25,059
RESEARCH GRANTS FOR LYMPHEDEMA 

557
00:23:25,059 --> 00:23:27,328
RESEARCH AND WE NEED TO MAKE 

558
00:23:27,328 --> 00:23:33,834
SURE WE HAVE A LYMPHATIC 

559
00:23:33,834 --> 00:23:36,237
DISEASES DATA SET AND THERE'S 

560
00:23:36,237 --> 00:23:38,172
THERE'S A PAGE BUT I'M NOT 

561
00:23:38,172 --> 00:23:41,609
FAMILIAR WITH HOW TO GET THE 

562
00:23:41,609 --> 00:23:44,445
DATA SET INFORMATION AND SO AND 

563
00:23:44,445 --> 00:23:45,479
THERE ARE SOME GRANTS OUT THERE 

564
00:23:45,479 --> 00:23:48,048
BUT THEY'RE VERY LARGE GRANTS 

565
00:23:48,048 --> 00:23:50,151
AND DIFFICULT TO -- THEY'RE VERY

566
00:23:50,151 --> 00:23:51,552
COMPETITIVE.

567
00:23:51,552 --> 00:23:52,219
SOMETHING SMALLER THAT CAN HELP 

568
00:23:52,219 --> 00:23:57,091
SOME OF THE CLD'S TO PROVIDE THE

569
00:23:57,091 --> 00:23:58,259
BOOTS ON THE GROUND RESEARCH I 

570
00:23:58,259 --> 00:24:01,061
THINK WOULD BE VERY HELPFUL.

571
00:24:01,061 --> 00:24:03,197
I APPRECIATE THE INVITE TODAY 

572
00:24:03,197 --> 00:24:04,899
AND I HOPE THAT OUR PRESENTATION

573
00:24:04,899 --> 00:24:07,568
FROM LANA HAS BEEN INSIGHTFUL 

574
00:24:07,568 --> 00:24:08,235
FOR EVERYONE HERE.

575
00:24:08,235 --> 00:24:09,069
THANK YOU SO MUCH.

576
00:24:09,069 --> 00:24:10,404
>> THANK YOU, DAVID.

577
00:24:10,404 --> 00:24:11,372
THANK YOU TO KAREN TOO.

578
00:24:11,372 --> 00:24:12,373
THIS WAS GREAT AND WE'LL HAVE 

579
00:24:12,373 --> 00:24:15,376
MORE TIME TO DISCUSS AT THE END.

580
00:24:15,376 --> 00:24:25,886
SO I'M GOING TO PRESENT OUR NEXT

581
00:24:25,886 --> 00:24:28,489
PRESENTER, SHEYANNE BRINSON.

582
00:24:28,489 --> 00:24:30,224
>> THANK YOU.

583
00:24:30,224 --> 00:24:30,891
THANK YOU VERY MUCH TO THE NIH 

584
00:24:30,891 --> 00:24:33,194
FOR ALLOWING US TO BE HERE 

585
00:24:33,194 --> 00:24:41,936
TODAY.

586
00:24:41,936 --> 00:24:43,938
FDRS IS DEDICATED TO I AM 

587
00:24:43,938 --> 00:24:45,940
IMPROVING THE QUALITY OF LIFE 

588
00:24:45,940 --> 00:24:48,375
FOR ALL PEOPLE AFFECTED BY 

589
00:24:48,375 --> 00:24:49,944
ADIPOSE TISSUE DISORDERS BY 

590
00:24:49,944 --> 00:24:51,111
SUPPORTING RESEARCH, EDUCATION, 

591
00:24:51,111 --> 00:24:52,613
ADVOCACY AND COLLABORATION AND 

592
00:24:52,613 --> 00:24:56,650
WE'RE A GRASSROOTS ORGANIZATION 

593
00:24:56,650 --> 00:24:59,286
FOUNDED IN 2009.

594
00:24:59,286 --> 00:25:03,324
AS OUR NAME INDICATED, FAT 

595
00:25:03,324 --> 00:25:06,594
DISORDERS RESEARCH SOCIETY WHEN 

596
00:25:06,594 --> 00:25:17,271
WE WERE FOUNDED, LYMPHEDEMA WERE

597
00:25:17,271 --> 00:25:20,441
CONSIDERED FAT DISORDERS AND 

598
00:25:20,441 --> 00:25:24,511
HAVE GONE TO FAT DISORDERS TO 

599
00:25:24,511 --> 00:25:26,280
ADIPOSE TISSUE DISORDER AND OUR 

600
00:25:26,280 --> 00:25:31,719
NAME STILL REPRESENTS THE 

601
00:25:31,719 --> 00:25:39,026
ADIPOSE IS A FAT DISORDER.

602
00:25:39,026 --> 00:25:42,129
AS I MENTIONED, FDRS WE'RE 

603
00:25:42,129 --> 00:25:43,797
DEDICATED TO IMPROVING THE 

604
00:25:43,797 --> 00:25:46,400
QUALITY OF LIFE FOR ALL ADIPOSE 

605
00:25:46,400 --> 00:25:51,405
TISSUE OR FAT DISORDERS 

606
00:25:51,405 --> 00:25:56,477
INCLUDING LYMPHEDEMA, THESE 

607
00:25:56,477 --> 00:25:57,711
DISEASES.

608
00:25:57,711 --> 00:26:02,549
WHEN WE LOOK AT OUR CONSTITUENTS

609
00:26:02,549 --> 00:26:04,351
AND WHO WE ARE REPRESENTING, 

610
00:26:04,351 --> 00:26:07,087
WHAT ARE OUR CHALLENGES?

611
00:26:07,087 --> 00:26:09,556
WE FIND THE SIGNIFICANT 

612
00:26:09,556 --> 00:26:12,793
CHALLENGES FOR PATIENTS WITH 

613
00:26:12,793 --> 00:26:15,262
THESE CONDITIONS FIRST STARTS 

614
00:26:15,262 --> 00:26:17,197
WITH EARLY DIAGNOSIS.

615
00:26:17,197 --> 00:26:19,833
EARLY DIAGNOSIS CAN BE VERY 

616
00:26:19,833 --> 00:26:23,470
HELPFUL, OBVIOUSLY, FOR PATIENTS

617
00:26:23,470 --> 00:26:26,140
AND ALSO PIGGYBACKING ON WHAT 

618
00:26:26,140 --> 00:26:30,878
LANA WAS TALKING ABOUT WAS LOCAL

619
00:26:30,878 --> 00:26:32,313
CARE OPTIONS FOR DIAGNOSIS AND 

620
00:26:32,313 --> 00:26:34,014
TREATMENT NOT JUST PATIENTS IN 

621
00:26:34,014 --> 00:26:36,383
URBAN AREAS BUT ALSO IN THE 

622
00:26:36,383 --> 00:26:38,786
RURAL AND UNDER SERVED AREAS.

623
00:26:38,786 --> 00:26:39,953
THAT INCLUDES BOTH NON SURGICAL 

624
00:26:39,953 --> 00:26:45,225
AND SURGICAL OPTIONS.

625
00:26:45,225 --> 00:26:47,928
MANY PATIENTS GO EITHER WITHOUT 

626
00:26:47,928 --> 00:26:49,096
DIAGNOSIS AND/OR TREATMENT 

627
00:26:49,096 --> 00:26:50,731
BECAUSE THERE'S NOT ANYONE IN 

628
00:26:50,731 --> 00:26:56,603
THEIR LOCAL COMMUNITY WHO IS 

629
00:26:56,603 --> 00:27:07,114
EVEN FAMILIAR WITH LYMPHEDEMA 

630
00:27:08,248 --> 00:27:15,122
AND QUAR OPTIONS -- CARE OPTIONS

631
00:27:15,122 --> 00:27:16,256
AND TREATMENT.

632
00:27:16,256 --> 00:27:17,725
COVERAGE WILL COVER FOR A 

633
00:27:17,725 --> 00:27:21,195
PATIENT TO GO SEE A PHYSICIAN OR

634
00:27:21,195 --> 00:27:27,167
A NURSE PRACTITIONER OR P.A. OR 

635
00:27:27,167 --> 00:27:27,434
THERAPIST.

636
00:27:27,434 --> 00:27:28,969
AS LONG AS IT'S A MEDICAL 

637
00:27:28,969 --> 00:27:30,838
CONDITION AND THEY'RE SEEING A 

638
00:27:30,838 --> 00:27:39,780
MEDICAL PROVIDER, THAT IS GOING 

639
00:27:39,780 --> 00:27:41,815
TO BE COVERED UNDER INSURANCE.

640
00:27:41,815 --> 00:27:46,120
HOWEVER MANY TREATMENTS FOR 

641
00:27:46,120 --> 00:27:51,759
LYMPHEDEMA THERE'S SOME OF THE 

642
00:27:51,759 --> 00:27:57,197
NON-SURGICAL TREATMENTS ARE NOT 

643
00:27:57,197 --> 00:27:58,966
COVERED AND LUCKILY WE NOW HAVE 

644
00:27:58,966 --> 00:28:04,071
ACCESS TO COMPRESSION THAT IS 

645
00:28:04,071 --> 00:28:14,548
COVEREDS  BECAUSE MEDICARE 

646
00:28:15,616 --> 00:28:22,489
COVERS IT BUT NOT ALL COVER IT.

647
00:28:22,489 --> 00:28:24,825
AND WE'RE LOOKING AT MIGRATION 

648
00:28:24,825 --> 00:28:26,360
PLATES NOT COVERED BY INSURANCE 

649
00:28:26,360 --> 00:28:31,799
AND DEPENDING ON SOMEONE'S 

650
00:28:31,799 --> 00:28:33,767
ACCESS THAT MAY OR MAY NOT BE 

651
00:28:33,767 --> 00:28:36,970
COVERED DEPENDING ON THE 

652
00:28:36,970 --> 00:28:38,839
PROVIDER BECAUSE NOT ALL 

653
00:28:38,839 --> 00:28:45,212
PROVIDERS ARE PHYSICAL OR 

654
00:28:45,212 --> 00:28:51,051
OCCUPATIONAL THERAPISTS.

655
00:28:51,051 --> 00:28:52,419
THE OTHER AREA IS COVERAGE FOR 

656
00:28:52,419 --> 00:28:53,654
SURGICAL TREATMENTS.

657
00:28:53,654 --> 00:28:56,223
THOUGH A LOT OF HEADWAY HAS BEEN

658
00:28:56,223 --> 00:28:57,357
MADE IN THE PAST 10 YEARS, 

659
00:28:57,357 --> 00:29:00,761
THERE'S A NUMBER OF PATIENTS 

660
00:29:00,761 --> 00:29:04,598
STRUGGLING TO GET COVERAGE FOR 

661
00:29:04,598 --> 00:29:09,269
SURGICAL INTERVENTIONS INCLUDING

662
00:29:09,269 --> 00:29:11,772
LYMPHEDEMA REMOVAL SURGERY OR 

663
00:29:11,772 --> 00:29:12,339
REDUCTIONS.

664
00:29:12,339 --> 00:29:13,974
WHEN WE DO HAVE THE INSURANCE 

665
00:29:13,974 --> 00:29:16,810
COVERAGE WE'RE ALSO LOOKING FOR 

666
00:29:16,810 --> 00:29:18,412
FAIR REIMBURSEMENT FOR THE 

667
00:29:18,412 --> 00:29:23,083
PROVIDERS PROVIDERI II IING -- 

668
00:29:23,083 --> 00:29:25,319
PROVIDING IT.

669
00:29:25,319 --> 00:29:27,788
MANY DO NOT PARTICIPATE BECAUSE 

670
00:29:27,788 --> 00:29:29,823
OF THE REIMBURSEMENT ASSOCIATED 

671
00:29:29,823 --> 00:29:33,193
WITH IT.

672
00:29:33,193 --> 00:29:35,696
MANY PATIENTS WHO HAVE TO 

673
00:29:35,696 --> 00:29:36,029
TRAVEL.

674
00:29:36,029 --> 00:29:37,698
EARLY ON MANY PATIENTS WERE 

675
00:29:37,698 --> 00:29:40,868
GOING TO GERMANY AND OTHER 

676
00:29:40,868 --> 00:29:43,303
EUROPEAN COUNTRIES TO RECEIVE 

677
00:29:43,303 --> 00:29:43,737
SURGICAL TREATMENT.

678
00:29:43,737 --> 00:29:48,742
THERE'S STILL A NUMBER OF 

679
00:29:48,742 --> 00:29:51,778
PATIENTS IS THAT STILL ELECT TO 

680
00:29:51,778 --> 00:29:53,514
DO THAT.

681
00:29:53,514 --> 00:29:56,984
WE'VE HAD U.S. BASED SURGEONS 

682
00:29:56,984 --> 00:29:58,952
PERFORMING INTERVENTIONS BUT THE

683
00:29:58,952 --> 00:30:01,722
NUMBER DOES NOT MEET THE NEED OF

684
00:30:01,722 --> 00:30:06,560
THE PATIENTS THAT REQUIRE IT.

685
00:30:06,560 --> 00:30:08,295
AND THE TWO THINGS PROHIBITIVE 

686
00:30:08,295 --> 00:30:11,932
ARE LACK OF INSURANCE COVERAGE 

687
00:30:11,932 --> 00:30:15,002
AND/OR TRANSPORTATION.

688
00:30:15,002 --> 00:30:16,136
SO PEOPLE ROUTINELY TRAVELLING 

689
00:30:16,136 --> 00:30:24,878
OUT OF STATE FOR CARE.

690
00:30:24,878 --> 00:30:26,613
I DON'T WANT TO GO UNDER STATED 

691
00:30:26,613 --> 00:30:29,182
IS COMPASSION AND UNDERSTANDING.

692
00:30:29,182 --> 00:30:32,819
WHETHER IT'S FOR THEIR CONDITION

693
00:30:32,819 --> 00:30:34,288
FROM THEIR FAMILY AND LOVED ONES

694
00:30:34,288 --> 00:30:38,292
AND COMPASSION AND UNDERSTANDING

695
00:30:38,292 --> 00:30:40,093
FROM PROVIDERS, MEDICAL 

696
00:30:40,093 --> 00:30:41,194
PROVIDERS THAT THEY ARE ARE 

697
00:30:41,194 --> 00:30:51,572
SEEKING OUT FOR CARE.

698
00:30:51,838 --> 00:30:53,507
OUR MAJOR RESOURCE CHALLENGES 

699
00:30:53,507 --> 00:30:55,409
INCLUDE AS MENTIONED BEFORE ARE 

700
00:30:55,409 --> 00:30:57,778
THE INSURANCE COVERAGE FOR 

701
00:30:57,778 --> 00:31:01,048
NON-SURGICAL TREATMENTS, 

702
00:31:01,048 --> 00:31:03,050
COMPRESSION, VIBRATION PLATES, 

703
00:31:03,050 --> 00:31:11,725
SUPPLEMENTS, MLD, ETCETERA.

704
00:31:11,725 --> 00:31:14,695
THOUGH SOME CAN BE COVERED BY 

705
00:31:14,695 --> 00:31:15,662
PRIVATE INSURANCE SOME HAVE 

706
00:31:15,662 --> 00:31:17,197
GOVERNMENT FUNDING WHETHER 

707
00:31:17,197 --> 00:31:19,466
THROUGH MEDICARE AND/OR MEDICAID

708
00:31:19,466 --> 00:31:21,535
AND MEDICAID AT THE STATE LEVEL 

709
00:31:21,535 --> 00:31:26,306
IN MANY CASES DOES NOT COVER A 

710
00:31:26,306 --> 00:31:27,040
LOT OF THE TREATMENTS THAT PLAY 

711
00:31:27,040 --> 00:31:32,613
BE AVAILABLE TO SOMEONE WHO HAS 

712
00:31:32,613 --> 00:31:39,519
PRIVATE INSURANCE.

713
00:31:39,519 --> 00:31:40,721
WHETHER REIMBURSEMENT AS IT 

714
00:31:40,721 --> 00:31:42,322
RELATES FOR SURGICAL TREATMENT 

715
00:31:42,322 --> 00:31:44,424
BUT THAT GOES ALONG WITH ALL THE

716
00:31:44,424 --> 00:31:51,131
TREATMENTS TO ALLOW TO MAKE SURE

717
00:31:51,131 --> 00:31:53,033
THAT THE PEOPLE PROVIDING THE 

718
00:31:53,033 --> 00:31:55,369
SERVICES ARE BEING REIMBURSED 

719
00:31:55,369 --> 00:31:55,602
FAIRLY.

720
00:31:55,602 --> 00:32:00,407
MUCH OF THE TREATMENTS AVAILABLE

721
00:32:00,407 --> 00:32:07,881
TO US INCLUDE CENTERED AROUND 

722
00:32:07,881 --> 00:32:10,283
PATIENT SELF-CARE AND USING FOOD

723
00:32:10,283 --> 00:32:12,319
AS MEDICINE AND ADHERING TO A 

724
00:32:12,319 --> 00:32:14,554
NUTRITION PLAN THAT WILL HELP 

725
00:32:14,554 --> 00:32:16,023
REDUCE INFLAMMATION AND PROVIDER

726
00:32:16,023 --> 00:32:20,527
NUTRIENTS PATIENTS NEED CAN BE 

727
00:32:20,527 --> 00:32:25,198
VERY EXPENSIVE FOR ANYONE LIVING

728
00:32:25,198 --> 00:32:29,202
IN THE U.S. AS WELL AS 

729
00:32:29,202 --> 00:32:31,204
SPECIFICALLY FOR PEOPLE WHO HAVE

730
00:32:31,204 --> 00:32:32,606
LIMITED MEANS.

731
00:32:32,606 --> 00:32:34,708
THE COST OF HEALTHY FOODS 

732
00:32:34,708 --> 00:32:37,210
BECOMES A MAJOR RESOURCE 

733
00:32:37,210 --> 00:32:47,387
CHALLENGE.

734
00:32:55,262 --> 00:32:58,131
ALSO TRANSPORTATION AND HOME 

735
00:32:58,131 --> 00:32:58,999
DUTIES TAKING CARE OF CHILDREN 

736
00:32:58,999 --> 00:33:01,201
AND LOVED ONES.

737
00:33:01,201 --> 00:33:07,340
HAVING TO BE ABLE TO GO FOR 

738
00:33:07,340 --> 00:33:09,109
APPOINTMENTS THAT ARE MULTIPLE 

739
00:33:09,109 --> 00:33:11,378
DAYS A WEEK CAN BE A CHALLENGE 

740
00:33:11,378 --> 00:33:16,383
AFFORDING THE GAS IT TAKES TO 

741
00:33:16,383 --> 00:33:26,493
DRIVE.

742
00:33:31,665 --> 00:33:33,333
ALL THESE CAN BE RESOURCE 

743
00:33:33,333 --> 00:33:36,870
CHALLENGES FOR PATIENTS LIVING 

744
00:33:36,870 --> 00:33:38,138
WITH LYMPHEDEMA.

745
00:33:38,138 --> 00:33:39,439
WE'RE A NON-PROFIT ORGANIZATIONS

746
00:33:39,439 --> 00:33:41,575
AND OUR ACTIVITIES HAVE BEEN 

747
00:33:41,575 --> 00:33:44,010
AROUND HOLDING AN ANNUAL 

748
00:33:44,010 --> 00:33:45,078
CONFERENCE THAT BRINGS TOGETHER 

749
00:33:45,078 --> 00:33:46,880
PHYSICIANS AND THERAPISTS AND 

750
00:33:46,880 --> 00:33:48,782
RESEARCHERS AND OTHER CLINICIANS

751
00:33:48,782 --> 00:33:49,649
ALONG WITH PATIENTS.

752
00:33:49,649 --> 00:33:56,590
WE FIND THIS TO BE A VERY UNIQUE

753
00:33:56,590 --> 00:33:57,791
OPPORTUNITY TO BRING THE 

754
00:33:57,791 --> 00:34:01,895
STAKEHOLDERS TOGETHER TO LEARN 

755
00:34:01,895 --> 00:34:03,463
AND ADVANCE ABOUT LYMPHEDEMA AND

756
00:34:03,463 --> 00:34:03,764
DISEASES.

757
00:34:03,764 --> 00:34:09,202
THIS IS AN OPPORTUNITY FOR THE 

758
00:34:09,202 --> 00:34:11,905
CLINICIANS TO EARN CME AND FOR 

759
00:34:11,905 --> 00:34:16,977
PATIENTS TO COME TOGETHER AND 

760
00:34:16,977 --> 00:34:24,217
HAVE I SENSE OF COMMUNITY.

761
00:34:24,217 --> 00:34:28,088
OUR WEBSITE HAS EVOLVED TO 

762
00:34:28,088 --> 00:34:28,855
PROVIDE THE EDUCATIONAL 

763
00:34:28,855 --> 00:34:32,826
INFORMATION AVAILABLE TO 

764
00:34:32,826 --> 00:34:33,126
CLINICIANS.

765
00:34:33,126 --> 00:34:37,631
AND WE HAVE A YOUTUBE CHANNEL TO

766
00:34:37,631 --> 00:34:40,167
RECORD THE SESSIONS THAT ALLOWS 

767
00:34:40,167 --> 00:34:49,810
US TO PROVIDE THE EDUCATION.

768
00:34:49,810 --> 00:34:51,244
YOU BRING THAT UP BECAUSE WE 

769
00:34:51,244 --> 00:34:52,045
NEED MORE EDUCATION AND 

770
00:34:52,045 --> 00:35:02,222
PROVIDERS.

771
00:35:09,262 --> 00:35:13,166
1  IT GOES TO OUR TOP THREE 

772
00:35:13,166 --> 00:35:15,368
WISHES HAVING LOCAL DOCTORS AND 

773
00:35:15,368 --> 00:35:17,103
VIRTUAL OPTIONS FOR THOSE UNABLE

774
00:35:17,103 --> 00:35:20,440
TO TRAVEL OR FOR PATIENTS THAT 

775
00:35:20,440 --> 00:35:22,642
ARE HOMEBOUND HAVING THE OPTIONS

776
00:35:22,642 --> 00:35:25,178
FOR THEM.

777
00:35:25,178 --> 00:35:26,646
THE SECOND WISH FALLS UNDER 

778
00:35:26,646 --> 00:35:27,981
INSURANCE COVERAGE WE TALKED 

779
00:35:27,981 --> 00:35:37,123
ABOUT BEFORE.

780
00:35:37,123 --> 00:35:39,492
THREE IS A CURE FOR LYMPHEDEMA.

781
00:35:39,492 --> 00:35:42,295
EVEN BEFORE WE GET THERE WE NEED

782
00:35:42,295 --> 00:35:45,131
TO HAVE MORE AND ADDITIONAL 

783
00:35:45,131 --> 00:35:50,036
RESEARCH FOR LYMPHEDEMA.

784
00:35:50,036 --> 00:35:52,806
>> THANK YOU, THIS WAS A
THOUGHT

785
00:35:52,806 --> 00:35:54,774
PROVOKING DECISION AND WILL 

786
00:35:54,774 --> 00:35:56,276
DISCUSS IT MORE IN THE 

787
00:35:56,276 --> 00:35:59,446
DISCUSSION TIME.

788
00:35:59,446 --> 00:36:03,783
NEXT IS HEATHER FERGUSON FOUNDER

789
00:36:03,783 --> 00:36:07,520
AND EXECUTIVE DIRECTOR OFE AND 

790
00:36:07,520 --> 00:36:09,189
THE PATIENT REPRESENTATIVES FROM

791
00:36:09,189 --> 00:36:15,795
LYMPHEDEMA TREATMENT ACT.

792
00:36:15,795 --> 00:36:17,731
>> THANK YOU AND GOOD
MORNING.

793
00:36:17,731 --> 00:36:18,865
THANK YOU SO MUCH FOR THE 

794
00:36:18,865 --> 00:36:20,267
OPPORTUNITY TO BE HERE TODAY.

795
00:36:20,267 --> 00:36:21,635
MY NAME IS HEATHER FERGUSON AND 

796
00:36:21,635 --> 00:36:24,938
I'M THE FOUNDER AND EXECUTIVE 

797
00:36:24,938 --> 00:36:25,672
DIRECTOR OF THE LYMPHEDEMA 

798
00:36:25,672 --> 00:36:29,209
ADVOCACY GROUP AND ALSO THE 

799
00:36:29,209 --> 00:36:32,913
MOTHER OF AN 18-YEAR-OLD SON 

800
00:36:32,913 --> 00:36:35,248
BORN WITH PRIMARY LYMPHEDEMA AND

801
00:36:35,248 --> 00:36:37,317
HIS TWIN BROTHER, WHO DOES NOT 

802
00:36:37,317 --> 00:36:42,923
HAVE LYMPHEDEMA ARE PICTURED ON 

803
00:36:42,923 --> 00:36:44,357
THE SECOND SLIDE.

804
00:36:44,357 --> 00:36:47,060
WHEN MY SON, DILLAN, WAS 7 

805
00:36:47,060 --> 00:36:49,362
MONTHS OLD HE WAS PRESCRIBED HIS

806
00:36:49,362 --> 00:36:50,797
FIRST SET OF COMPRESSION 

807
00:36:50,797 --> 00:36:51,031
GARMENT.

808
00:36:51,031 --> 00:36:52,198
THEY WERE DENIED AND SET ME ON 

809
00:36:52,198 --> 00:36:56,169
THE PATH OF BECOMING AN 

810
00:36:56,169 --> 00:36:56,436
ADVOCATE.

811
00:36:56,436 --> 00:36:57,237
THE LYMPHEDEMA ADVOCACY GROUP IS

812
00:36:57,237 --> 00:37:01,474
AN ALL-VOLUNTEER, GRASSROOTS, 

813
00:37:01,474 --> 00:37:02,175
PATIENT-CENTERED ORGANIZATION.

814
00:37:02,175 --> 00:37:03,810
IT'S OUR GROUP WHO LED THE 

815
00:37:03,810 --> 00:37:10,116
NEARLY 13-YEAR EFFORT TO PASS 

816
00:37:10,116 --> 00:37:16,856
THE LYMPHEDEMA ACT FOR SUPPLIES.

817
00:37:16,856 --> 00:37:19,192
THE COVERAGE BEGAN JANUARY 1, 

818
00:37:19,192 --> 00:37:22,095
THIS YEAR AND THE GROUP'S 

819
00:37:22,095 --> 00:37:25,198
PRIMARY FOCUS CONTINUES TO BE ON

820
00:37:25,198 --> 00:37:30,003
IMPROVEMENTS TO INSURANCE 

821
00:37:30,003 --> 00:37:39,346
COVERAGE AND ACCESS.

822
00:37:39,346 --> 00:37:40,747
DESPITE THE PROGRESS MADE 

823
00:37:40,747 --> 00:37:45,085
INSURANCE REMAINS THE CHALLENGE.

824
00:37:45,085 --> 00:37:50,724
PATIENT HAVE NOW RECEIVING SCENT

825
00:37:50,724 --> 00:37:59,666
COVERAGE THANKS TO THE 

826
00:37:59,666 --> 00:38:01,201
LYMPHEDEMA COVERAGE.

827
00:38:01,201 --> 00:38:04,037
IN ORDER TO QUALIFY FOR COVERAGE

828
00:38:04,037 --> 00:38:07,140
PATIENTS MUST HAVE A LYMPHEDEMA 

829
00:38:07,140 --> 00:38:10,844
DIAGNOSE AND PRESCRIPTION FOR 

830
00:38:10,844 --> 00:38:12,612
THE GARMENTS THEY RECEIVE.

831
00:38:12,612 --> 00:38:14,447
MANY DON'T HAVE A PHYSICIAN 

832
00:38:14,447 --> 00:38:20,653
CAPABLE OF PROVIDING THESE 

833
00:38:20,653 --> 00:38:23,923
THINGS AND AN INSUFFICIENT 

834
00:38:23,923 --> 00:38:25,525
NUMBER OF LYMPHEDEMA THERAPISTS 

835
00:38:25,525 --> 00:38:27,727
MEANS PATIENTS FACE DELAYS IN 

836
00:38:27,727 --> 00:38:29,095
GETTING THE CARE THEY NEED OR 

837
00:38:29,095 --> 00:38:31,564
TRAVEL LONG DISTANCES TO ATTAIN 

838
00:38:31,564 --> 00:38:32,599
IT.

839
00:38:32,599 --> 00:38:34,267
LASTLY, BETTER INSURANCE 

840
00:38:34,267 --> 00:38:39,773
COVERAGE HAS RESULTED IN ORDERS.

841
00:38:39,773 --> 00:38:40,373
SINCE INSURANCE WILL ONLY 

842
00:38:40,373 --> 00:38:44,978
CONTINUE TO IMPROVE AND THE 

843
00:38:44,978 --> 00:38:46,379
PREVALENCE OF LYMPHEDEMA DUES TO

844
00:38:46,379 --> 00:38:48,381
RISE DUE TO INCREASING 

845
00:38:48,381 --> 00:38:51,818
SURVIVORSHIP IT'S CLEAR WE HAVE 

846
00:38:51,818 --> 00:38:53,953
AN INEFFICIENT NUMBER OF 

847
00:38:53,953 --> 00:38:56,689
COMPRESSION GARMENT PROVIDERS 

848
00:38:56,689 --> 00:38:58,725
WHO TAKE INSURANCE AND PROVIDER 

849
00:38:58,725 --> 00:39:00,527
CUSTOM FIT GARMENTS.

850
00:39:00,527 --> 00:39:01,828
THE THREE THINGS THAT WOULD MOST

851
00:39:01,828 --> 00:39:03,663
IMPROV THE LIVES OF THOSE WE 

852
00:39:03,663 --> 00:39:05,198
SERVE ARE UNIVERSAL ADOPTION OF 

853
00:39:05,198 --> 00:39:08,435
THE MEDICARE COVERAGE RULES AND 

854
00:39:08,435 --> 00:39:10,036
REIMBURSEMENT RATES, AN INCREASE

855
00:39:10,036 --> 00:39:13,239
IN PHYSICIAN AWARENESS AND 

856
00:39:13,239 --> 00:39:14,240
EDUCATION ABOUT LYMPHEDEMA AND 

857
00:39:14,240 --> 00:39:16,576
BETTER, EASIER AND CHEAPER 

858
00:39:16,576 --> 00:39:18,578
ACCESS TO CARE PUTTING TREATMENT

859
00:39:18,578 --> 00:39:19,879
FOR LYMPHEDEMA ON PAR WITH THAT 

860
00:39:19,879 --> 00:39:23,616
FOR ANY OTHER DISEASE.

861
00:39:23,616 --> 00:39:26,319
DESPITE THE PROGRESS MADE IN 

862
00:39:26,319 --> 00:39:28,354
INSURANCE COVERAGE AND 

863
00:39:28,354 --> 00:39:31,191
ELSEWHERE, THE OVER ALL 

864
00:39:31,191 --> 00:39:33,093
SENTIMENT FROM PATIENTS IS THEY 

865
00:39:33,093 --> 00:39:36,029
STILL FEEL LIKE THEY'RE TREATED 

866
00:39:36,029 --> 00:39:37,363
LIKE SECOND CLASS CITIZENS BY 

867
00:39:37,363 --> 00:39:38,832
THE HEALTH CARE SYSTEM.

868
00:39:38,832 --> 00:39:42,936
TOO MANY DOCTORS ARE NOT ONLY 

869
00:39:42,936 --> 00:39:43,903
UNKNOWLEDGEABLE ABOUT LYMPHEDEMA

870
00:39:43,903 --> 00:39:46,506
BUT SOMETIMES DISMISSIVE.

871
00:39:46,506 --> 00:39:47,540
SPECIALISTS ARE FEW AND FAR 

872
00:39:47,540 --> 00:39:48,808
BETWEEN AND ACCESSING AND 

873
00:39:48,808 --> 00:39:50,944
AFFORDING CARE IS STILL FAR MORE

874
00:39:50,944 --> 00:39:53,913
CHALLENGING THAN FORCE OTHER 

875
00:39:53,913 --> 00:39:54,180
DISEASES.

876
00:39:54,180 --> 00:39:55,682
I KNOW EVERYBODY IN THE MEETING 

877
00:39:55,682 --> 00:39:58,618
IS WORKING TO CHANGE THESE 

878
00:39:58,618 --> 00:40:01,187
THINGS AND I AM VERY CONFIDENCE 

879
00:40:01,187 --> 00:40:03,189
TOGETHER WE WILL.

880
00:40:03,189 --> 00:40:04,157
THANK YOU FOR THE OPPORTUNITY TO

881
00:40:04,157 --> 00:40:05,425
BE PART OF THE TOWN HALL AND 

882
00:40:05,425 --> 00:40:09,762
I'LL TURN IT OVER TO OUR TWO 

883
00:40:09,762 --> 00:40:13,199
PATIENT REPRESENTATIVES.

884
00:40:13,199 --> 00:40:20,140
SPEAKING FIRST IS FRANCI SCHWAB 

885
00:40:20,140 --> 00:40:20,740
AND BECKY SHARP USING SLIDE 

886
00:40:20,740 --> 00:40:20,940
FOUR.

887
00:40:20,940 --> 00:40:30,884
THANK YOU.

888
00:40:30,884 --> 00:40:34,254
>> I'M FRANCI SCHWAB.

889
00:40:34,254 --> 00:40:37,157
I'M A BREAST CANCER SURVIVOR AND

890
00:40:37,157 --> 00:40:40,560
LYMPHEDEMA PATIENT AND ON THE 

891
00:40:40,560 --> 00:40:41,327
BOARD OF THE LYMPHEDEMA ADVOCACY

892
00:40:41,327 --> 00:40:48,701
GROUP AND LEAD A SUPPORT GROUP.

893
00:40:48,701 --> 00:40:50,870
THERE'S A GAP IN PROFESSIONALS 

894
00:40:50,870 --> 00:40:57,177
AND LACK OF EDUCATION IN MED 

895
00:40:57,177 --> 00:41:00,013
SCHOOLS.

896
00:41:00,013 --> 00:41:05,785
MY SYMPTOMS WERE ALSO DISMISSED 

897
00:41:05,785 --> 00:41:07,887
BY MY DOCTOR.

898
00:41:07,887 --> 00:41:10,156
THE LYMPHEDEMA ADVOCACY GROUP 

899
00:41:10,156 --> 00:41:13,126
AND THE LYMPHEDEMA SUPPORT GROUP

900
00:41:13,126 --> 00:41:15,261
BOTH FEEL STRONGLY THAT OUR 

901
00:41:15,261 --> 00:41:20,833
CERTIFIED THERAPISTS SHOULD BE 

902
00:41:20,833 --> 00:41:22,202
ABLE TO BILL AND FITTING OF 

903
00:41:22,202 --> 00:41:23,503
PROFESSIONAL GARMENTS.

904
00:41:23,503 --> 00:41:26,339
THEY KNOW US AND ARE FAMILIAR 

905
00:41:26,339 --> 00:41:28,241
WITH OUR PARTICULAR LYMPHEDEMA 

906
00:41:28,241 --> 00:41:29,209
ISSUES.

907
00:41:29,209 --> 00:41:32,212
BECAUSE THEY CAN'T, FOR EXAMPLE,

908
00:41:32,212 --> 00:41:34,147
HOSPITALS IN OUR AREA LITERALLY 

909
00:41:34,147 --> 00:41:38,451
HAVE THERAPISTS REFER US TO THE 

910
00:41:38,451 --> 00:41:42,121
HOSPITAL GIFT SHOP FOR 

911
00:41:42,121 --> 00:41:42,488
MEASURING.

912
00:41:42,488 --> 00:41:44,023
SOME FITTERS ARE HIGHLY SKILLED,

913
00:41:44,023 --> 00:41:49,395
OTHERS ARE NOT.

914
00:41:49,395 --> 00:41:51,698
BUT WE NEED TO ADDRESS THIS 

915
00:41:51,698 --> 00:41:53,833
THROUGH FUTURE RULE MAKING SO 

916
00:41:53,833 --> 00:41:55,068
PATIENTS HAVE THE OPTION TO BE 

917
00:41:55,068 --> 00:41:59,038
MEASURED AND FIT BY THOSE BEST 

918
00:41:59,038 --> 00:42:00,773
QUALIFIED TO DO SO.

919
00:42:00,773 --> 00:42:05,178
THERE'S BE AN EXTREME SHORTAGE 

920
00:42:05,178 --> 00:42:06,279
OF CERTIFIED LYMPHEDEMA 

921
00:42:06,279 --> 00:42:08,014
THERAPISTS AS MENTIONED.

922
00:42:08,014 --> 00:42:09,849
PATIENTS ARE TYPICALLY WAITING A

923
00:42:09,849 --> 00:42:11,884
COUPLE MONTHS JUST FOR AN 

924
00:42:11,884 --> 00:42:14,787
APPOINTMENT.

925
00:42:14,787 --> 00:42:16,789
REALLY ON THE NCLD STATED GOALS 

926
00:42:16,789 --> 00:42:20,326
WHICH I THINK OF AS CONNECTING 

927
00:42:20,326 --> 00:42:23,529
THE DOTS, EMPOWER LYMPHATIC 

928
00:42:23,529 --> 00:42:24,897
RESEARCH, CONNECT RESEARCH TO 

929
00:42:24,897 --> 00:42:27,500
EDUCATION THROUGH PHYSICIANS IN 

930
00:42:27,500 --> 00:42:30,536
MED SCHOOL AND THEN PHYSICIANS 

931
00:42:30,536 --> 00:42:31,738
CAN DIAGNOSIS AND EDUCATE AND 

932
00:42:31,738 --> 00:42:34,741
SEND PATIENTS FOR TREATMENT AND 

933
00:42:34,741 --> 00:42:36,209
ULTIMATELY THEN PATIENTS QUALITY

934
00:42:36,209 --> 00:42:38,378
OF LIFE IMPROVES.

935
00:42:38,378 --> 00:42:42,382
BUT THE HOPE IS THAT INCREASED 

936
00:42:42,382 --> 00:42:47,553
AWARENESS ARE, THESE OTHER TWO 

937
00:42:47,553 --> 00:42:48,388
BECOME CERTIFIED LYMPHEDEMA 

938
00:42:48,388 --> 00:42:48,821
THERAPIST.

939
00:42:48,821 --> 00:42:50,923
WHAT CAN WE DO TO HELP PATIENTS 

940
00:42:50,923 --> 00:43:01,367
NOW IN NEED OF TREATMENT?

941
00:43:11,411 --> 00:43:17,183
AND MY EXPERIENCE HAS BEEN THAT 

942
00:43:17,183 --> 00:43:21,354
MOST HOSPITALS ARE NOT 

943
00:43:21,354 --> 00:43:21,688
COMPLYING.

944
00:43:21,688 --> 00:43:23,623
MY FINAL LINE IS EARLY ACCESS TO

945
00:43:23,623 --> 00:43:24,357
CARE MEANS BETTER QUALITY OF 

946
00:43:24,357 --> 00:43:25,191
LIFE.

947
00:43:25,191 --> 00:43:35,435
SO THANK YOU.

948
00:43:35,702 --> 00:43:38,471
>> GOOD MORNING.

949
00:43:38,471 --> 00:43:41,107
I HAVE LYMPHEDEMA IN MY RIGHT 

950
00:43:41,107 --> 00:43:42,542
ARM AND TRUNK SECONDARY TO 

951
00:43:42,542 --> 00:43:45,712
BREAST CANCER AND HAVE IT IN 

952
00:43:45,712 --> 00:43:47,080
BOTH LEGS SECONDARY TO 

953
00:43:47,080 --> 00:43:48,414
LYMPHEDEMA.

954
00:43:48,414 --> 00:43:49,215
I'VE BEEN ON A LYMPHEDEMA BOARD 

955
00:43:49,215 --> 00:43:51,517
SINCE 2013.

956
00:43:51,517 --> 00:43:59,525
I STARTED A SUPPORT GROUP IN 

957
00:43:59,525 --> 00:44:01,461
KNOXVILLE, TENNESSEE AND I HAVE 

958
00:44:01,461 --> 00:44:02,595
ATTENDED MANY LYMPHEDEMA 

959
00:44:02,595 --> 00:44:02,895
CONFERENCES.

960
00:44:02,895 --> 00:44:04,163
OUR BIGGEST CHALLENGE OVER THE 

961
00:44:04,163 --> 00:44:07,300
YEARS WAS TO GET THE LTA PASSED 

962
00:44:07,300 --> 00:44:08,801
INTO LAW BUT WE STILL HAVE 

963
00:44:08,801 --> 00:44:10,903
CONTINUOUS WORK TO DO TO ENSURE 

964
00:44:10,903 --> 00:44:13,639
THE LAW IS ENACTED SO THAT 

965
00:44:13,639 --> 00:44:15,975
EVERYONE CAN BENEFIT FROM 

966
00:44:15,975 --> 00:44:18,144
MEDICARE OR INSURANCES PAYING 

967
00:44:18,144 --> 00:44:19,812
THEIR SHARE FOR COMPRESSION 

968
00:44:19,812 --> 00:44:21,147
GARMENTS.

969
00:44:21,147 --> 00:44:24,751
ALSO HOW TO ACCESS COMPRESSION 

970
00:44:24,751 --> 00:44:25,852
GARMENT SUPPLIERS TO OBTAIN 

971
00:44:25,852 --> 00:44:27,820
GARMENTS IS A CHALLENGE.

972
00:44:27,820 --> 00:44:29,889
THERE ARE MANY OTHER RESOURCE 

973
00:44:29,889 --> 00:44:30,690
CHALLENGES FACED BY OUR 

974
00:44:30,690 --> 00:44:31,724
CONSTITUENTS.

975
00:44:31,724 --> 00:44:34,627
ONE IS OBTAINING A CORRECT 

976
00:44:34,627 --> 00:44:36,028
DIAGNOSIS OF LYMPHEDEMA 

977
00:44:36,028 --> 00:44:37,130
ESPECIALLY WHEN EARLY DETECTION 

978
00:44:37,130 --> 00:44:39,665
YIELDS MORE POSITIVE RESULTS.

979
00:44:39,665 --> 00:44:41,334
VERY FEW DOCTORS ARE 

980
00:44:41,334 --> 00:44:42,201
KNOWLEDGEABLE ABOUT LYMPHEDEMA 

981
00:44:42,201 --> 00:44:45,238
AND ITS TREATMENT.

982
00:44:45,238 --> 00:44:47,206
THUS THEIR SWELLING MAY BE 

983
00:44:47,206 --> 00:44:48,374
MISTREATED CAUSING MORE HARM.

984
00:44:48,374 --> 00:44:51,077
IF THE PATIENT IS FORTUNATE 

985
00:44:51,077 --> 00:44:53,346
ENOUGH TO BE REFERRED TO THEY 

986
00:44:53,346 --> 00:44:56,382
MAY NOT BE ABLE TO AFFORD THE 

987
00:44:56,382 --> 00:44:57,984
CO-PAY OR HAVE ENOUGH VISITS TO 

988
00:44:57,984 --> 00:44:58,851
COMPLETE TREATMENT OR MONETARY 

989
00:44:58,851 --> 00:45:01,621
MEANS TO PAY THE 20% AFTER 

990
00:45:01,621 --> 00:45:03,055
MEDICARE PAYS THE 80%.

991
00:45:03,055 --> 00:45:05,024
MY TOP THREE OF MANY WISHES I 

992
00:45:05,024 --> 00:45:09,195
FEEL WOULD MOST IMPROVE PATIENTS

993
00:45:09,195 --> 00:45:10,596
WITH LYMPHEDEMA FIRST ALL 

994
00:45:10,596 --> 00:45:12,031
PHYSICIANS WOULD BE 

995
00:45:12,031 --> 00:45:14,901
KNOWLEDGEABLE ABOUT LYMPHEDEMA 

996
00:45:14,901 --> 00:45:16,869
ESPECIALLY PRIMARY LYMPHEDEMAS 

997
00:45:16,869 --> 00:45:17,770
AND KNOW WHERE TO REFER THE 

998
00:45:17,770 --> 00:45:20,540
PATIENT IN OBTAINING CARE.

999
00:45:20,540 --> 00:45:21,707
MY SECOND WISH IS HAVING MORE 

1000
00:45:21,707 --> 00:45:24,143
TIME WITH PATIENTS TO GIVE THEM 

1001
00:45:24,143 --> 00:45:25,178
COMPLETE CARE AND NOT HAVE TO 

1002
00:45:25,178 --> 00:45:27,647
CUT CORNERS IN TREATMENT.

1003
00:45:27,647 --> 00:45:30,416
MY THIRD WISH IS ALL AGENCIES 

1004
00:45:30,416 --> 00:45:33,186
INVOLVED IN LYMPHEDEMA OUTCOMES 

1005
00:45:33,186 --> 00:45:35,888
SUCH AS PAYMENTS FOR CARE, 

1006
00:45:35,888 --> 00:45:39,492
APPROPRIATE CLT AND RESEARCH IN 

1007
00:45:39,492 --> 00:45:40,827
LYMPHATIC RESEARCHES AND 

1008
00:45:40,827 --> 00:45:42,462
SURGERIES FOR LYMPHEDEMA 

1009
00:45:42,462 --> 00:45:44,397
TREATMENT, FOR EXAMPLE, ALL PLAN

1010
00:45:44,397 --> 00:45:47,033
TOGETHER FOR INDIVIDUAL 

1011
00:45:47,033 --> 00:45:48,434
TREATMENT FOR LYMPHEDEMA 

1012
00:45:48,434 --> 00:45:49,735
PATIENTS SINCE LYMPHEDEMA IS NOT

1013
00:45:49,735 --> 00:45:51,337
ONE DISEASE BUT MANY AND LEADS 

1014
00:45:51,337 --> 00:45:52,872
TO THE NEED FOR DIFFERENT 

1015
00:45:52,872 --> 00:45:54,240
TREATMENTS AND NOT FOCUS ON A 

1016
00:45:54,240 --> 00:45:55,374
COOKIE CUTTER APPROACH TO 

1017
00:45:55,374 --> 00:45:55,641
TREATMENT.

1018
00:45:55,641 --> 00:46:00,613
THANK YOU.

1019
00:46:00,613 --> 00:46:02,515
>> THANK YOU, ALL, THIS IS
VERY 

1020
00:46:02,515 --> 00:46:03,816
IMPORTANT TO HEAR YOUR 

1021
00:46:03,816 --> 00:46:04,717
EXPERIENCES.

1022
00:46:04,717 --> 00:46:09,789
WE'RE MOVING ON TO THE NEXT 

1023
00:46:09,789 --> 00:46:10,590
PRESENTER, KIMBERLY KARR MANAGE 

1024
00:46:10,590 --> 00:46:16,496
OF THE CODING AND PAYMENT POLICY

1025
00:46:16,496 --> 00:46:19,499
AND THE AMERICAN PAVEMENT 

1026
00:46:19,499 --> 00:46:26,038
ASSOCIATION AND NAYDZA MUHAMMAD.

1027
00:46:26,038 --> 00:46:27,073
>> THANK YOU.

1028
00:46:27,073 --> 00:46:28,875
WE'D LIKE TO THANK YOU FOR BEING

1029
00:46:28,875 --> 00:46:29,542
INCLUDED.

1030
00:46:29,542 --> 00:46:30,476
WE'RE PART OF AN ORGANIZATION 

1031
00:46:30,476 --> 00:46:32,578
REPRESENTING THE INTEREST OF 

1032
00:46:32,578 --> 00:46:34,747
MORE THAN 230,000 OCCUPATIONAL 

1033
00:46:34,747 --> 00:46:36,015
THERAPISTS AND ASSISTANTS AND 

1034
00:46:36,015 --> 00:46:38,150
STUDENTS OF OCCUPATIONAL 

1035
00:46:38,150 --> 00:46:38,584
THERAPY.

1036
00:46:38,584 --> 00:46:41,487
OUR SCIENCE-DRIVEN, 

1037
00:46:41,487 --> 00:46:42,855
EVIDENCE-BASED PRACTICE ENABLES 

1038
00:46:42,855 --> 00:46:44,056
PEOPLE OF ALL AGES TO LIVE LIFE 

1039
00:46:44,056 --> 00:46:47,093
TO THUR FULLEST BY PROMOTING AND

1040
00:46:47,093 --> 00:46:49,262
REDUCING THE EFFECTS OF ILLNESS 

1041
00:46:49,262 --> 00:46:52,098
DURING DISABILITY.

1042
00:46:52,098 --> 00:46:54,066
OCCUPATIONAL THERAPY HELPS 

1043
00:46:54,066 --> 00:46:55,968
CLIENTS MAXIMIZE PARTICIPATION 

1044
00:46:55,968 --> 00:47:00,106
IN DAILY LIFE.

1045
00:47:00,106 --> 00:47:02,108
PRACTITIONERS WORK WITH PERSONS 

1046
00:47:02,108 --> 00:47:03,075
WITH LYMPHATIC DISEASE AND PAIN 

1047
00:47:03,075 --> 00:47:06,078
AND EDEMA AND ADDRESS SYMPTOMS, 

1048
00:47:06,078 --> 00:47:07,680
TEACH SELF-MANAGEMENT 

1049
00:47:07,680 --> 00:47:09,849
STRATEGIES, RECOMMEND, MEASURE 

1050
00:47:09,849 --> 00:47:11,751
AND FIT APPROPRIATE COMPRESSION 

1051
00:47:11,751 --> 00:47:17,924
GARMENTS TO REDUCE THE IMPACT OF

1052
00:47:17,924 --> 00:47:19,025
LYMPHATIC DISEASE AND MAXIMIZE 

1053
00:47:19,025 --> 00:47:20,593
ROLES AND ROUTINES THROUGH 

1054
00:47:20,593 --> 00:47:21,093
REHABILITATION AND TASK 

1055
00:47:21,093 --> 00:47:25,398
MODIFICATION.

1056
00:47:25,398 --> 00:47:26,966
THE CLIENTS WE SERVE FACE 

1057
00:47:26,966 --> 00:47:29,201
SEVERAL CHALLENGES.

1058
00:47:29,201 --> 00:47:31,704
KNOWLEDGE AMONG HEALTH CARE 

1059
00:47:31,704 --> 00:47:32,271
PROFESSIONALS IN LYMPHATIC 

1060
00:47:32,271 --> 00:47:34,507
DISEASE AND TREATMENT OPTIONS 

1061
00:47:34,507 --> 00:47:36,008
IMPACT OUTCOMES.

1062
00:47:36,008 --> 00:47:38,945
WHEN DIAGNOSIS IS DELAYED, SO IS

1063
00:47:38,945 --> 00:47:40,880
INITIATING INTERVENTION.

1064
00:47:40,880 --> 00:47:43,215
CLIENTS REPORT A LACK OF HEALTH 

1065
00:47:43,215 --> 00:47:45,217
CARE PROFESSIONAL AWARENESS AND 

1066
00:47:45,217 --> 00:47:47,753
CONTRAINDICATIONS THAT 

1067
00:47:47,753 --> 00:47:49,055
EXACERBATE THEIR SYSTEMS SUCH AS

1068
00:47:49,055 --> 00:47:56,362
PAIN AND EDEMA DUE TO PERFORMING

1069
00:47:56,362 --> 00:47:57,763
BLOOD PRESSURE TESTS.

1070
00:47:57,763 --> 00:47:59,265
ACCESS TO SERVICES AND TREATMENT

1071
00:47:59,265 --> 00:48:02,068
BY THERAPISTS AND OCCUPATIONAL 

1072
00:48:02,068 --> 00:48:05,037
THERAPISTS AND DURABLE MEDICAL 

1073
00:48:05,037 --> 00:48:07,106
EQUIPMENT CREATE FURTHER 

1074
00:48:07,106 --> 00:48:07,740
CHALLENGE ESPECIALLY IN RURAL 

1075
00:48:07,740 --> 00:48:09,175
AREAS.

1076
00:48:09,175 --> 00:48:10,576
WAITING LISTS FOR THERAPIST 

1077
00:48:10,576 --> 00:48:12,979
PRESENT AND ONCE THE NEED FOR A 

1078
00:48:12,979 --> 00:48:14,714
COMPRESSION GARMENT IS 

1079
00:48:14,714 --> 00:48:15,781
IDENTIFIED IT CAN TAKE 

1080
00:48:15,781 --> 00:48:16,515
SIGNIFICANT TIME FOR A PROVIDER 

1081
00:48:16,515 --> 00:48:18,517
TO HAVE SOMEONE TO COME OUT AND 

1082
00:48:18,517 --> 00:48:20,486
MEASURE THE CLIENT AND GET THE 

1083
00:48:20,486 --> 00:48:22,655
GARMENT MADE AND ORDERED AND 

1084
00:48:22,655 --> 00:48:26,459
SENT BACK TO THE CLIENT FOR USE.

1085
00:48:26,459 --> 00:48:27,493
VARIABLE INSURANCE COVERAGE ALSO

1086
00:48:27,493 --> 00:48:29,929
LEAVES CLIENTS CONFUSED ON WHAT 

1087
00:48:29,929 --> 00:48:32,031
THEIR BENEFITS COVER AND OFTEN 

1088
00:48:32,031 --> 00:48:36,769
LEADING TO HIGH OUT OF COST.

1089
00:48:36,769 --> 00:48:40,373
LYMPHEDEMA ACT IMPROVED FOR 

1090
00:48:40,373 --> 00:48:43,175
BENEFICIARIES BUT THERE'S LOW 

1091
00:48:43,175 --> 00:48:45,778
RATES OF VENDERS WILLING TO TAKE

1092
00:48:45,778 --> 00:48:47,546
A MEDICARE PATIENT AND OFTEN 

1093
00:48:47,546 --> 00:48:50,549
DOES NOT COVER GARMENTS CREATING

1094
00:48:50,549 --> 00:48:51,183
ISSUES IN HEALTH EQUITY BETWEEN 

1095
00:48:51,183 --> 00:48:56,989
PLAYERS.

1096
00:48:56,989 --> 00:48:57,857
-- PAYERS.

1097
00:48:57,857 --> 00:49:01,327
AND IT'S IMPACT CHALLENGES 

1098
00:49:01,327 --> 00:49:02,928
INCLUDING CERTIFIED LYMPHEDEMA 

1099
00:49:02,928 --> 00:49:04,597
THERAPY AND OTHER RESOURCES 

1100
00:49:04,597 --> 00:49:06,265
O.T.s CAN PROVIDE.

1101
00:49:06,265 --> 00:49:07,500
IN RURAL AREAS IT CAN BE 

1102
00:49:07,500 --> 00:49:11,671
CHALLENGING TO BE CONNECTED TO A

1103
00:49:11,671 --> 00:49:12,171
CERTIFIED THERAPIST.

1104
00:49:12,171 --> 00:49:14,540
TELEHEALTH HAS BEEN CRITICAL TO 

1105
00:49:14,540 --> 00:49:15,875
ADDRESSING ACCESS IN RURAL AREAS

1106
00:49:15,875 --> 00:49:19,612
BUT THE ABILITY OF PRACTITIONERS

1107
00:49:19,612 --> 00:49:20,913
TO DELIVER TELEHEALTH COMES TO 

1108
00:49:20,913 --> 00:49:24,016
AN END AT THE END OF DECEMBER IF

1109
00:49:24,016 --> 00:49:25,184
THERE'S NOT FLEXIBILITY FOR NEXT

1110
00:49:25,184 --> 00:49:26,752
YEAR AND HAVE SEEN CHALLENGES 

1111
00:49:26,752 --> 00:49:27,787
FOR PROVIDERS AND CLIENTS 

1112
00:49:27,787 --> 00:49:29,188
UNDERSTANDING THE ROLE OF 

1113
00:49:29,188 --> 00:49:32,358
OCCUPATIONAL THERAPY AND 

1114
00:49:32,358 --> 00:49:35,061
CERTIFIED LYMPHEDEMA THERAPY 

1115
00:49:35,061 --> 00:49:37,063
WHICH LIMITS REFERRAL.

1116
00:49:37,063 --> 00:49:38,898
THERE'S FREQUENTLY NOT ENOUGH 

1117
00:49:38,898 --> 00:49:41,434
DURABLE FITTERS IN AREAS TO 

1118
00:49:41,434 --> 00:49:43,469
CONDUCT THE FITTING SERVICES.

1119
00:49:43,469 --> 00:49:45,771
CERTIFIED THERAPISTS ARE TRAINED

1120
00:49:45,771 --> 00:49:48,474
AND IN THE PAST UNDER CASH PAY 

1121
00:49:48,474 --> 00:49:49,975
PROVIDING MEASUREMENT AND 

1122
00:49:49,975 --> 00:49:51,177
FITTING SERVICES BUT THERE'S NO 

1123
00:49:51,177 --> 00:49:52,311
MECHANISM TO REIMBURSEMENT FOR 

1124
00:49:52,311 --> 00:49:54,246
THE SERVICE UNDER MEDICARE.

1125
00:49:54,246 --> 00:49:55,848
UNDER THE NEW MEDICARE BENEFIT 

1126
00:49:55,848 --> 00:49:57,783
THE REIMBURSEMENT FOR MEASURING 

1127
00:49:57,783 --> 00:50:00,653
AND FITTING IS WRAPPED IN THE 

1128
00:50:00,653 --> 00:50:03,789
GARMENT COST ITSELF MEANING THE 

1129
00:50:03,789 --> 00:50:04,457
EQUIPMENT PROVIDER IS PAID FOR 

1130
00:50:04,457 --> 00:50:06,859
THE MEASURING AND FITTING 

1131
00:50:06,859 --> 00:50:07,560
SERVICE EVEN WHEN IT'S MEASURED 

1132
00:50:07,560 --> 00:50:08,894
BY THE PRACTITIONER.

1133
00:50:08,894 --> 00:50:12,732
THE ONLY WAY FOR A THERAPIST TO 

1134
00:50:12,732 --> 00:50:17,436
RECEIVE REIMBURSE MANY THE  -- 

1135
00:50:17,436 --> 00:50:18,804
REIMBURSEMENT IS TO CONTRACT AND

1136
00:50:18,804 --> 00:50:20,573
HAVE NOT BEEN ABLE TO CONTRACT 

1137
00:50:20,573 --> 00:50:24,443
DUE TO LOW REIMBURSEMENT RATES 

1138
00:50:24,443 --> 00:50:25,678
UNDER MEDICARE LEAVING IT 

1139
00:50:25,678 --> 00:50:30,716
DOESN'T LEAVE ENOUGH MONEY TO 

1140
00:50:30,716 --> 00:50:36,288
PROVIDE ENOUGH TO PAY THE 

1141
00:50:36,288 --> 00:50:38,257
THERAPIST AND LEAVES A WAIT TIME

1142
00:50:38,257 --> 00:50:39,525
OF WEEKS AND MONTHS THOUGH 

1143
00:50:39,525 --> 00:50:41,527
THERE'S A POOL WHO CAN SUPPORT 

1144
00:50:41,527 --> 00:50:45,231
TIMELY ACCESS.

1145
00:50:45,231 --> 00:50:47,199
THESE CLIENTS AND RESOURCE 

1146
00:50:47,199 --> 00:50:50,002
CHALLENGES INFORM OUR WISH LIST 

1147
00:50:50,002 --> 00:50:51,637
FOR LYMPHATIC DISEASE 

1148
00:50:51,637 --> 00:50:51,937
MANAGEMENT.

1149
00:50:51,937 --> 00:50:57,610
THREE THINGS WOULD BE INCREASED 

1150
00:50:57,610 --> 00:50:58,310
PROVIDER EDUCATION FOR REFERRAL 

1151
00:50:58,310 --> 00:51:01,647
FOR SERVICES, IMPROVED COVERAGE 

1152
00:51:01,647 --> 00:51:05,184
OF TREATMENT SERVICES AND 

1153
00:51:05,184 --> 00:51:07,386
COMPRESSION SIZE AND GARMENT 

1154
00:51:07,386 --> 00:51:09,822
FITTING AND WORKING ON WAYS TO 

1155
00:51:09,822 --> 00:51:12,124
ENSURE CLIENTS GET THE GARMENTS 

1156
00:51:12,124 --> 00:51:13,192
AND SUPPLIES TO MANAGE THEIR 

1157
00:51:13,192 --> 00:51:16,095
DISEASE WHEN THEY NEED THEM 

1158
00:51:16,095 --> 00:51:17,196
WITHOUT SUFFICIENT OUT OF POCKET

1159
00:51:17,196 --> 00:51:19,598
COSTS.

1160
00:51:19,598 --> 00:51:24,336
I'D LIKE TO INTRODUCE NAYDZA 

1161
00:51:24,336 --> 00:51:27,106
MUHAMMAD A CERTIFIED O.T. AND 

1162
00:51:27,106 --> 00:51:28,207
PERSON WITH LIVED EXPERIENCE.

1163
00:51:28,207 --> 00:51:31,577
>> GOOD MORNING, HELLO.

1164
00:51:31,577 --> 00:51:38,884
MY NAME IS NAYDZA MUHAMMAD AND A

1165
00:51:38,884 --> 00:51:39,752
PATIENT AND ADVOCATE.

1166
00:51:39,752 --> 00:51:46,458
I HAVE A SYNDROME AND LEFT LOWER

1167
00:51:46,458 --> 00:51:53,833
EXTREMITY DISEASE.

1168
00:51:53,833 --> 00:51:55,534
UNFORTUNATELY OUR CHALLENGES ARE

1169
00:51:55,534 --> 00:51:57,203
COMMON AND WIDESPREAD SO I'LL 

1170
00:51:57,203 --> 00:51:58,704
MIRROR SOME OF THE CHALLENGES 

1171
00:51:58,704 --> 00:51:59,271
FROM THE OTHER PRESENT THIS 

1172
00:51:59,271 --> 00:52:09,415
MORNING.

1173
00:52:31,070 --> 00:52:37,509
AND I WAS INAPPROPRIATELY 

1174
00:52:37,509 --> 00:52:39,612
REFERRED TO A VASCULAR DOCTOR.

1175
00:52:39,612 --> 00:52:41,747
SO MANY GO YEARS WITHOUT A 

1176
00:52:41,747 --> 00:52:45,184
DIAGNOSIS AND CARE IS MISSED.

1177
00:52:45,184 --> 00:52:48,587
AS A CERTIFIED LYMPHEDEMA 

1178
00:52:48,587 --> 00:52:49,521
THERAPIST I'M STILL GETTING 

1179
00:52:49,521 --> 00:52:52,091
REFERRALS FROM DOCTOR AND NURSE 

1180
00:52:52,091 --> 00:52:54,593
PRACTITIONERS FROM DIAGNOSIS OF 

1181
00:52:54,593 --> 00:52:57,830
PERIPHERAL EDEMA OR EDEMA FOR 

1182
00:52:57,830 --> 00:53:01,033
PATIENTS WHO CLEARLY HAVE 

1183
00:53:01,033 --> 00:53:01,333
LYMPHEDEMA.

1184
00:53:01,333 --> 00:53:04,069
THIS NEGATIVELY IMPACTS BY 

1185
00:53:04,069 --> 00:53:05,804
ABILITY TO ORDER COMPRESSION 

1186
00:53:05,804 --> 00:53:07,306
GARMENTS AND INITIATE FOR 

1187
00:53:07,306 --> 00:53:10,943
CONTINUE TREATMENT DEPENDING ON 

1188
00:53:10,943 --> 00:53:13,846
THE INSURANCE PROVIDER DUE TO 

1189
00:53:13,846 --> 00:53:15,481
INACCURATE OR INADEQUATE 

1190
00:53:15,481 --> 00:53:15,748
DIAGNOSIS.

1191
00:53:15,748 --> 00:53:17,049
A SIGNIFICANT BARRIER TO 

1192
00:53:17,049 --> 00:53:19,318
TREATMENT FOR BOTH MYSELF AND A 

1193
00:53:19,318 --> 00:53:22,521
LOT OF MY PATIENTS IS LACK OF 

1194
00:53:22,521 --> 00:53:22,755
ACCESS.

1195
00:53:22,755 --> 00:53:25,858
I WORK IN A RURAL AREA IN 

1196
00:53:25,858 --> 00:53:28,594
MISSISSIPPI AND THE ONLY 

1197
00:53:28,594 --> 00:53:29,762
CERTIFIED LYMPHEDEMA THERAPIST 

1198
00:53:29,762 --> 00:53:33,065
WITHIN 60 PLUS MILES.

1199
00:53:33,065 --> 00:53:34,733
I'VE BEEN DIAGNOSED WITH 

1200
00:53:34,733 --> 00:53:36,635
LYMPHEDEMA SINCE 2016 AND NEVER 

1201
00:53:36,635 --> 00:53:39,405
BEEN CERTIFIED BY A THERAPIST, 

1202
00:53:39,405 --> 00:53:40,806
NEVER OTHER THAN MYSELF.

1203
00:53:40,806 --> 00:53:43,042
DUE TO THE LACK OF PROVIDERS 

1204
00:53:43,042 --> 00:53:44,543
WITHIN A REASONABLE DISTANCE OF 

1205
00:53:44,543 --> 00:53:45,311
WHERE I LIVE.

1206
00:53:45,311 --> 00:53:47,146
ALONG WITH THAT BARRIER COMES 

1207
00:53:47,146 --> 00:53:49,982
THE LACK OF QUALIFIED FITTERS 

1208
00:53:49,982 --> 00:53:52,351
AND CUSTOM GARMENT MEASURING 

1209
00:53:52,351 --> 00:53:53,185
PROFESSIONALS.

1210
00:53:53,185 --> 00:53:54,653
THIS LIMIT DOES CONCERN ME 

1211
00:53:54,653 --> 00:53:56,722
GREATLY AND WE SHOULD FIGHT TO 

1212
00:53:56,722 --> 00:53:58,290
FIGHT MORE RESOURCES IN PLACE 

1213
00:53:58,290 --> 00:53:59,658
NOT FEWER.

1214
00:53:59,658 --> 00:54:01,493
RESOURCES LIKE OCCUPATIONAL 

1215
00:54:01,493 --> 00:54:02,895
THERAPY TELEHEALTH AND PROVIDING

1216
00:54:02,895 --> 00:54:04,296
CARE TO THOSE WHO HAVE 

1217
00:54:04,296 --> 00:54:06,966
LIMITATIONS SUCH AS LACK OF 

1218
00:54:06,966 --> 00:54:08,200
TRANSPORTATION, DIMINISHED 

1219
00:54:08,200 --> 00:54:10,703
MOBILITY, ETCETERA.

1220
00:54:10,703 --> 00:54:14,340
THE LACK OF CLTs AND HOSPITALS 

1221
00:54:14,340 --> 00:54:17,176
AND IN THE HOME HEALTH SETTING 

1222
00:54:17,176 --> 00:54:19,745
IS A GLARING LACK.

1223
00:54:19,745 --> 00:54:23,015
MY PATIENTS WHO BECOME 

1224
00:54:23,015 --> 00:54:24,216
HOSPITALIZED DURING TREATMENT 

1225
00:54:24,216 --> 00:54:29,188
RETURN TO ME EITHER HAVING LOST 

1226
00:54:29,188 --> 00:54:32,891
ALL WE GAVE OR WORSE OFF AND 

1227
00:54:32,891 --> 00:54:35,194
SOME ARE UNABLE TO TRANSPORT AND

1228
00:54:35,194 --> 00:54:36,929
MISS OUT OF CARE BECAUSE OF LACK

1229
00:54:36,929 --> 00:54:37,963
OF L.T.s IN THE HOSPITAL AND 

1230
00:54:37,963 --> 00:54:39,765
HOME SETTING.

1231
00:54:39,765 --> 00:54:43,035
WHEN I HAVE BEEN HOSPITALIZED, 

1232
00:54:43,035 --> 00:54:48,474
TWICE LAST YEAR, I WAS UNABLE TO

1233
00:54:48,474 --> 00:54:51,810
KEEP UP WITH MY LYMPHEDEMA 

1234
00:54:51,810 --> 00:54:52,111
THERAPY.

1235
00:54:52,111 --> 00:54:54,013
AS A PRACTITIONER I WAS LOSING 

1236
00:54:54,013 --> 00:54:57,149
GROUND AND AS A PATIENT I FELT 

1237
00:54:57,149 --> 00:54:58,884
HELPLESS AND HOPELESS.

1238
00:54:58,884 --> 00:54:59,551
IN THE HOSPITAL AND HOME HEALTH 

1239
00:54:59,551 --> 00:55:00,853
CARE SETTINGS MY PATIENTS ARE 

1240
00:55:00,853 --> 00:55:05,424
DEPRIVED OF CARE.

1241
00:55:05,424 --> 00:55:08,060
MY WISH LIST AND MY WISHES ARE 

1242
00:55:08,060 --> 00:55:10,729
DIG AND HOPEFUL.

1243
00:55:10,729 --> 00:55:15,367
MY FIRST WISH IS SOME NATIONAL 

1244
00:55:15,367 --> 00:55:21,173
GOVERNING BODY OR LICENSED 

1245
00:55:21,173 --> 00:55:23,409
PROFESSIONALS PROVIDE EDUCATION 

1246
00:55:23,409 --> 00:55:27,813
ABOUT LYMPHEDEMA AND MAKE IT 

1247
00:55:27,813 --> 00:55:29,648
MANDATORY TO CONTINUE IN THEIR 

1248
00:55:29,648 --> 00:55:33,986
FIELD AND HOW TO IDENTIFY AND 

1249
00:55:33,986 --> 00:55:34,920
CORRECTLY TREAT LYMPHEDEMA AND 

1250
00:55:34,920 --> 00:55:37,756
LYMPHATIC DISORDERS.

1251
00:55:37,756 --> 00:55:41,326
ANOTHER WISH IS NEED FOR CODES 

1252
00:55:41,326 --> 00:55:44,229
OR CODE EXPANSION AND CLTs THAT 

1253
00:55:44,229 --> 00:55:46,532
MEASURE FOR GARMENTS CAN BE 

1254
00:55:46,532 --> 00:55:49,201
REIMBURSED FOR THEIR TIME, SKILL

1255
00:55:49,201 --> 00:55:52,504
AND EFFORTS.

1256
00:55:52,504 --> 00:55:55,707
THIS IS NOT IN PLACE AND SEE MY 

1257
00:55:55,707 --> 00:55:56,575
PATIENTS SUFFERING AS A RESULT 

1258
00:55:56,575 --> 00:56:01,180
AND THE PATIENTS OF CLTs THAT I 

1259
00:56:01,180 --> 00:56:08,687
NETWORK WITH.

1260
00:56:08,687 --> 00:56:11,990
MY LAST WISH IS A BIG WISH THAT 

1261
00:56:11,990 --> 00:56:13,225
EVERYONE UTILIZE THE POWER OF 

1262
00:56:13,225 --> 00:56:14,426
THEIR VOICE.

1263
00:56:14,426 --> 00:56:16,095
OUR VOICES CARRY ENORMOUS 

1264
00:56:16,095 --> 00:56:16,728
WEIGHT.

1265
00:56:16,728 --> 00:56:19,698
EVERY STORY HAS AN IMPACT AND 

1266
00:56:19,698 --> 00:56:20,532
SHARING INFORMATION IS A 

1267
00:56:20,532 --> 00:56:21,400
POWERFUL THING.

1268
00:56:21,400 --> 00:56:24,770
WE OFTEN UNDERESTIMATE OUR OWN 

1269
00:56:24,770 --> 00:56:26,238
INFLUENCE BECAUSE WE TEND TO 

1270
00:56:26,238 --> 00:56:27,639
LOOK AT OUR SITUATION AS NOVEL 

1271
00:56:27,639 --> 00:56:28,907
OR UNIQUE.

1272
00:56:28,907 --> 00:56:30,209
AND WHILE OUR SITUATIONS ARE 

1273
00:56:30,209 --> 00:56:33,178
SPECIFIC AND UNIQUE TO US, THERE

1274
00:56:33,178 --> 00:56:35,247
IS AN INTERSECTION OF 

1275
00:56:35,247 --> 00:56:36,448
EXPERIENCES.

1276
00:56:36,448 --> 00:56:38,517
WHEN WE SHARE AND MAKE THE 

1277
00:56:38,517 --> 00:56:39,451
EFFORT TO EDUCATE AND INFORM 

1278
00:56:39,451 --> 00:56:41,753
OTHERS ABOUT THESE EXPERIENCES, 

1279
00:56:41,753 --> 00:56:45,257
THE NATURAL CONSEQUENCE OF THIS 

1280
00:56:45,257 --> 00:56:47,559
IS INCREASED UNDERSTANDING, 

1281
00:56:47,559 --> 00:56:48,760
EMPATHY AND ULTIMATELY 

1282
00:56:48,760 --> 00:56:49,228
COMPASSION.

1283
00:56:49,228 --> 00:56:51,730
IF THIS WAS NOT TRUE THEN THE 

1284
00:56:51,730 --> 00:56:55,767
ALL VOLUNTEER GRASSROOTS 

1285
00:56:55,767 --> 00:56:57,169
BIPARTISAN TREATMENT OF THE 

1286
00:56:57,169 --> 00:56:57,803
LYMPHEDEMA TREATMENT ACT WOULD 

1287
00:56:57,803 --> 00:56:58,403
NOT EXIST.

1288
00:56:58,403 --> 00:56:59,004
THANK YOU FOR YOUR TIME AND 

1289
00:56:59,004 --> 00:57:01,340
ATTENTION THIS MORNING.

1290
00:57:01,340 --> 00:57:03,842
>> THANK YOU, AGAIN.

1291
00:57:03,842 --> 00:57:05,844
I APPRECIATE THAT CALL FOR 

1292
00:57:05,844 --> 00:57:08,380
BUILDING COMMUNITY, A LARGER 

1293
00:57:08,380 --> 00:57:08,647
COMMUNITY.

1294
00:57:08,647 --> 00:57:11,517
WITH THAT I WANT TO INTRODUCE 

1295
00:57:11,517 --> 00:57:20,692
THE NEXT SPEAKERS, JONATHAN KART

1296
00:57:20,692 --> 00:57:25,030
AND KASI GROSVENOR.

1297
00:57:25,030 --> 00:57:27,566
>> THE FLOOR IS YOURS,
JONATHAN.

1298
00:57:27,566 --> 00:57:28,901
>> THANK YOU TO THE
COMMISSION 

1299
00:57:28,901 --> 00:57:34,373
FOR INVITING US TO SPEAK TO THE 

1300
00:57:34,373 --> 00:57:36,074
TOWN HALL THIS MORNING.

1301
00:57:36,074 --> 00:57:37,042
IT'S WONDERFUL TO SEE 

1302
00:57:37,042 --> 00:57:39,511
COLLABORATORS.

1303
00:57:39,511 --> 00:57:42,648
I'M THE CEO OF THE LYMPHEDEMA 

1304
00:57:42,648 --> 00:57:44,349
FOUNDATION SORRY FOR MY VOICE 

1305
00:57:44,349 --> 00:57:49,855
AND I'M JUST GETTING OVER BEING 

1306
00:57:49,855 --> 00:57:53,125
UNDER THE WEATHER.

1307
00:57:53,125 --> 00:57:55,260
THE LYMPHEDEMA FOUNDATION WAS A 

1308
00:57:55,260 --> 00:57:56,929
NONPROFIT SET UP IN 2015 FOR 

1309
00:57:56,929 --> 00:57:59,765
ADDRESSING THREE PRIMARY 

1310
00:57:59,765 --> 00:58:02,601
CHALLENGES TO DEFINING, 

1311
00:58:02,601 --> 00:58:03,602
DIAGNOSING AND TREATING 

1312
00:58:03,602 --> 00:58:03,902
LYMPHEDEMA.

1313
00:58:03,902 --> 00:58:06,338
ONE IS A LACK OF RESEARCH 

1314
00:58:06,338 --> 00:58:06,672
FUNDING.

1315
00:58:06,672 --> 00:58:08,173
WE ADDRESSED THIS THROUGH 

1316
00:58:08,173 --> 00:58:09,041
PROVIDING FUNDING.

1317
00:58:09,041 --> 00:58:09,741
WE DON'T REQUIRE PRELIMINARY 

1318
00:58:09,741 --> 00:58:12,077
DATA FOR OUR FUNDING.

1319
00:58:12,077 --> 00:58:14,613
SO MOSTLY WHAT WE FUND IS PILOT 

1320
00:58:14,613 --> 00:58:17,516
PROJECTS AND WE'VE SUPPORTED 

1321
00:58:17,516 --> 00:58:21,620
OVER $12.5 MILLION IN PROJECTS 

1322
00:58:21,620 --> 00:58:24,356
GLOBALLY IT DATE RESULTING IN 

1323
00:58:24,356 --> 00:58:28,594
SEVERAL RO1s FROM THE NIH.

1324
00:58:28,594 --> 00:58:30,729
THE SECOND IS THE NASCENT STATE 

1325
00:58:30,729 --> 00:58:32,097
OF RESEARCH AND INFRASTRUCTURE 

1326
00:58:32,097 --> 00:58:37,369
AND NETWORKS IN THE LYMPHEDEMA 

1327
00:58:37,369 --> 00:58:40,005
FIELD THROUGH THE PATIENT 

1328
00:58:40,005 --> 00:58:44,142
REGISTRY THAT INCLUDES SEVERAL 

1329
00:58:44,142 --> 00:58:46,211
THOUSAND PARTICIPANTS TO DATE AS

1330
00:58:46,211 --> 00:58:47,946
WELL THE TISSUE BIO REPOSITORIES

1331
00:58:47,946 --> 00:58:50,315
AND BIO BANKS AND CONNECT THE 

1332
00:58:50,315 --> 00:58:52,217
NODE OF THE LYMPHEDEMA RESEARCH 

1333
00:58:52,217 --> 00:58:54,620
NETWORK INCLUDING CLINICIANS, 

1334
00:58:54,620 --> 00:58:55,654
RESEARCHERS AND PEOPLE WITH 

1335
00:58:55,654 --> 00:58:56,788
LYMPHEDEMA THROUGH SCIENTIFIC 

1336
00:58:56,788 --> 00:58:57,222
RECREATES.

1337
00:58:57,222 --> 00:58:59,758
THIS IS A BUSY WEEK FOR US AND 

1338
00:58:59,758 --> 00:59:02,728
THAT'S TRUE WE'RE KICKING OFF 

1339
00:59:02,728 --> 00:59:04,696
OUR 2024 RETREAT LATER TODAY AND

1340
00:59:04,696 --> 00:59:06,698
SEVERAL PROJECT WE FUNDED TO 

1341
00:59:06,698 --> 00:59:08,333
DATE INVOLVE MULTIPLE 

1342
00:59:08,333 --> 00:59:09,801
INSTITUTIONS AND BROAD SCALE 

1343
00:59:09,801 --> 00:59:10,168
COLLABORATIONS.

1344
00:59:10,168 --> 00:59:13,372
AND THE THIRD CHALLENGE IS 

1345
00:59:13,372 --> 00:59:15,073
RELATIVELY LOW TO THE GROWING 

1346
00:59:15,073 --> 00:59:15,674
AWARENESS ABOUT LYMPHEDEMA.

1347
00:59:15,674 --> 00:59:18,076
I'VE INCLUDED A HANDFUL OF THE 

1348
00:59:18,076 --> 00:59:23,749
RESOURCES WE CREATED TO DO THOSE

1349
00:59:23,749 --> 00:59:27,853
THINGS WE HAVE TOOLS AND 

1350
00:59:27,853 --> 00:59:29,021
BROCHURES ARE POPULAR.

1351
00:59:29,021 --> 00:59:31,089
WE'LL SEND THEM OUT TO AS MANY 

1352
00:59:31,089 --> 00:59:33,625
FOLKS AS POSSIBLE FOR FREE AND 

1353
00:59:33,625 --> 00:59:35,661
ON THE EDUCATION FRONT WE DO 

1354
00:59:35,661 --> 00:59:37,963
THINGS LIKE CREATE AND 

1355
00:59:37,963 --> 00:59:39,498
DISSEMINATE EDUCATION MODULES AS

1356
00:59:39,498 --> 00:59:45,103
WELL AS EXTENSIVE AWARENESS AND 

1357
00:59:45,103 --> 00:59:45,704
COLLATERAL COLLABORATION AND 

1358
00:59:45,704 --> 00:59:49,541
GOOD REVIEWS.

1359
00:59:49,541 --> 00:59:53,178
WE WORKED WAGE RESEARCHERS AND 

1360
00:59:53,178 --> 00:59:55,113
CLINICIANS AND SOME OF OUR 

1361
00:59:55,113 --> 00:59:57,082
CLOSEST COLLABORATORS ARE PEOPLE

1362
00:59:57,082 --> 00:59:59,251
WITH LYMPHEDEMA AND ON BEHALF OF

1363
00:59:59,251 --> 01:00:01,219
AND IN SERVICE OF THAT 

1364
01:00:01,219 --> 01:00:11,396
COMMUNITY.

1365
01:00:14,132 --> 01:00:17,202
SHEYANNE DID A GREAT JOB OF 

1366
01:00:17,202 --> 01:00:17,969
TALKING ABOUT KEY CHALLENGES 

1367
01:00:17,969 --> 01:00:25,077
FACING THE COMMUNITY OF PEOPLE 

1368
01:00:25,077 --> 01:00:25,610
WITH LYMPHEDEMA.

1369
01:00:25,610 --> 01:00:27,813
THIS CONDITION AFFECTS MILLIONS 

1370
01:00:27,813 --> 01:00:28,480
AND HAS SUBSTANTIAL QUALITY OF 

1371
01:00:28,480 --> 01:00:29,281
LIFE IMPACTS.

1372
01:00:29,281 --> 01:00:30,982
YOU CAN SEE THEM LISTED IN THE 

1373
01:00:30,982 --> 01:00:32,784
SECOND BULLET THERE ON THINGS 

1374
01:00:32,784 --> 01:00:35,287
LIKE DAILY PAIN OR FLARING PAIN 

1375
01:00:35,287 --> 01:00:37,656
FROM FOLKS AT THE LEVEL OF A 7 

1376
01:00:37,656 --> 01:00:40,392
OF 10 ON A VISUAL ANALOG SCALE 

1377
01:00:40,392 --> 01:00:41,960
AND FEAR OF LOSS OF MOBILITY AND

1378
01:00:41,960 --> 01:00:43,095
LOSS OF MOBILITY.

1379
01:00:43,095 --> 01:00:45,630
YOU SEE PHOTOS ON THE RIGHT SIDE

1380
01:00:45,630 --> 01:00:50,035
AND THE CONDITION CAN CERTAINLY 

1381
01:00:50,035 --> 01:00:51,937
IMPACT MOBILITY AND BE 

1382
01:00:51,937 --> 01:00:55,140
DISFIGURING AND DISABLING AND IT

1383
01:00:55,140 --> 01:00:58,477
CAN IMPACT FOLKS OVER THE 

1384
01:00:58,477 --> 01:00:58,810
DECADES.

1385
01:00:58,810 --> 01:01:03,849
THE PEAK TIME OF ONSET IS DURING

1386
01:01:03,849 --> 01:01:09,221
PUBERTY AND AVERAGE AGE OF 

1387
01:01:09,221 --> 01:01:10,389
DIAGNOSIS ISN'T UNTIL 40 AND 

1388
01:01:10,389 --> 01:01:13,392
HAVING IMPACT OVER THE COURSE OF

1389
01:01:13,392 --> 01:01:14,526
THEIR LIVES.

1390
01:01:14,526 --> 01:01:18,497
THE COMMISSION ASKED US TO SPEAK

1391
01:01:18,497 --> 01:01:19,931
ABOUT RESOURCE CHALLENGES AND 

1392
01:01:19,931 --> 01:01:22,868
TOP WISHES TO ADDRESS THOSE 

1393
01:01:22,868 --> 01:01:24,836
CHALLENGES.

1394
01:01:24,836 --> 01:01:29,107
AND IN LATE 2022 WE KICKED OFF A

1395
01:01:29,107 --> 01:01:29,775
BROAD STAKEHOLDER COLLABORATION 

1396
01:01:29,775 --> 01:01:32,611
TO ANSWER EXACTLY THOSE 

1397
01:01:32,611 --> 01:01:36,214
QUESTIONS AND THOSE 

1398
01:01:36,214 --> 01:01:39,551
CONVERSATIONS THAT ARE RETREAT 

1399
01:01:39,551 --> 01:01:40,919
SEEDED WITH OVER 60 SHAREHOLDERS

1400
01:01:40,919 --> 01:01:43,455
FOR THE ROAD MAP.

1401
01:01:43,455 --> 01:01:47,259
WE LAUNCHED THAT IN THE -- 

1402
01:01:47,259 --> 01:01:47,926
STAKEHOLDERS FOR THE ROAD MAP 

1403
01:01:47,926 --> 01:01:51,463
AND WE LAUNCHED THAT AND THERE'S

1404
01:01:51,463 --> 01:01:54,699
EXTENSIVE RECOMMENDATIONS AROUND

1405
01:01:54,699 --> 01:01:57,869
THE LYMPHATICS AND OVERLAP OF 

1406
01:01:57,869 --> 01:01:58,437
LYMPHEDEMA.

1407
01:01:58,437 --> 01:01:59,938
WE LAUNCHED TWO FOUNDATIONAL 

1408
01:01:59,938 --> 01:02:01,139
RESOURCES THAT ACCOMPANY THE 

1409
01:02:01,139 --> 01:02:01,840
ROAD MAP.

1410
01:02:01,840 --> 01:02:03,742
ONE IS A NARRATIVE REVIEW THAT 

1411
01:02:03,742 --> 01:02:05,577
LOOKS AT THE NATURAL HISTORY OF 

1412
01:02:05,577 --> 01:02:07,179
PATHOLOGY AND WHAT WE KNOW ABOUT

1413
01:02:07,179 --> 01:02:08,513
THOSE FROM THE EXISTING PUBLIC 

1414
01:02:08,513 --> 01:02:11,082
RESEARCH AND WE PUBLISHED AN 

1415
01:02:11,082 --> 01:02:13,218
OPEN IDEA DATABASE THAT'S 

1416
01:02:13,218 --> 01:02:14,119
PUBLICALLY ACCESSIBLE AND TO 

1417
01:02:14,119 --> 01:02:15,754
WHICH ANYONE CAN CONTRIBUTE.

1418
01:02:15,754 --> 01:02:19,791
YOU CAN SEE ALL THOSE RESOURCES 

1419
01:02:19,791 --> 01:02:21,226
AT THE QR CODE ON THE TOP SIDE 

1420
01:02:21,226 --> 01:02:22,461
AND I'LL NOTE A COUPLE THINGS 

1421
01:02:22,461 --> 01:02:23,128
THAT EMERGED FROM THE 

1422
01:02:23,128 --> 01:02:27,766
DISCUSSIONS ON THE NEXT SLIDE.

1423
01:02:27,766 --> 01:02:29,935
SO THESE ARE THE SAME CHALLENGES

1424
01:02:29,935 --> 01:02:32,204
YOU SAW IN THE FIRST SLIDE THAT 

1425
01:02:32,204 --> 01:02:34,840
WE'RE WORKING TO ADDRESS.

1426
01:02:34,840 --> 01:02:36,908
I THINK WE'RE MAKING GREAT 

1427
01:02:36,908 --> 01:02:38,210
STRIDES AROUND ADDRESSING THESE 

1428
01:02:38,210 --> 01:02:40,212
AND THERE'S ANY OPPORTUNITY FOR 

1429
01:02:40,212 --> 01:02:40,812
THE NATIONAL COMMISSION ON 

1430
01:02:40,812 --> 01:02:45,884
LYMPHATIC DISEASES AND I BROAD 

1431
01:02:45,884 --> 01:02:47,986
RANGE OF STAKEHOLDERS FOR BIGGER

1432
01:02:47,986 --> 01:02:48,420
SCALE.

1433
01:02:48,420 --> 01:02:49,254
ON AWARENESS AND EDUCATION, 

1434
01:02:49,254 --> 01:02:54,259
WE'VE HAD ENCOURAGING SIGNS IN 

1435
01:02:54,259 --> 01:02:56,962
RECENT WEEKS JUST THE AMERICAN 

1436
01:02:56,962 --> 01:02:59,865
BOARD OF OBESITY MEDICINE ADDED 

1437
01:02:59,865 --> 01:03:02,601
QUESTIONS ABOUT LYMPHEDEMA TO 

1438
01:03:02,601 --> 01:03:05,203
THE BOARD EXAM.

1439
01:03:05,203 --> 01:03:07,772
THIS IS A GREAT STEP AND 

1440
01:03:07,772 --> 01:03:09,307
ADDRESSING THIS AT SCALE MEANS 

1441
01:03:09,307 --> 01:03:11,209
GETTING MEDICAL PROFESSIONALS 

1442
01:03:11,209 --> 01:03:11,910
LEARNING AS WELL ABOUT IT AS 

1443
01:03:11,910 --> 01:03:14,546
THEY CAN.

1444
01:03:14,546 --> 01:03:17,315
WE NEED A MULTI-STAKEHOLDER 

1445
01:03:17,315 --> 01:03:18,717
EFFORT TO MAKE SURE IT EXPANDS 

1446
01:03:18,717 --> 01:03:24,256
BEYOND THE TARGETED SPECIALTIES 

1447
01:03:24,256 --> 01:03:25,357
CARDIOLOGY AND OBESITY MEDICINE 

1448
01:03:25,357 --> 01:03:29,194
AND TO BE IN SCHOOL AND WHERE 

1449
01:03:29,194 --> 01:03:31,997
THEY CAN ENCOUNTER LYMPHEDEMA 

1450
01:03:31,997 --> 01:03:34,699
AND FAMILY MEDICINE AND 

1451
01:03:34,699 --> 01:03:37,302
OBSTETRICS AND GYNECOLOGY.

1452
01:03:37,302 --> 01:03:41,039
WE NEED TO DO THINGS AT GREATER 

1453
01:03:41,039 --> 01:03:42,741
SCALE LIKE GETTING LYMPHEDEMA 

1454
01:03:42,741 --> 01:03:45,243
REPRESENTED ON BROAD SCALE 

1455
01:03:45,243 --> 01:03:46,177
SURVEYS AND THE FUNDAMENTAL 

1456
01:03:46,177 --> 01:03:49,581
THINGS TO UNDER THE FLOW OF 

1457
01:03:49,581 --> 01:03:52,484
PATIENTS AND TO DO BETTER 

1458
01:03:52,484 --> 01:03:55,954
RESEARCH THROUGH ICD CODES FOR 

1459
01:03:55,954 --> 01:03:57,756
LYMPHEDEMA AND REPRESENTING 

1460
01:03:57,756 --> 01:04:02,994
LYMPHEDEMA IN AN NIH REPORTER.

1461
01:04:02,994 --> 01:04:07,532
FINALLY, OF COURSE DO NEED MORE 

1462
01:04:07,532 --> 01:04:08,466
FUNDING AROUND LYMPHEDEMA.

1463
01:04:08,466 --> 01:04:10,468
WE ARE MAKING A LOT OF PROGRESS 

1464
01:04:10,468 --> 01:04:12,938
AROUND BUILDING OUT THE RESEARCH

1465
01:04:12,938 --> 01:04:13,872
BASE.

1466
01:04:13,872 --> 01:04:17,475
60% OF THE PRIMARY DATA PAPERS 

1467
01:04:17,475 --> 01:04:18,510
ON LYMPHEDEMA HAVE BEEN 

1468
01:04:18,510 --> 01:04:19,511
PUBLISHED IN THE LAST FIVE YEARS

1469
01:04:19,511 --> 01:04:22,180
AND IT'S A GREAT START BUT WHAT 

1470
01:04:22,180 --> 01:04:24,316
WE NEED ARE LARGE SCALE 

1471
01:04:24,316 --> 01:04:26,585
MULTI-INSTITUTION COLLABORATIONS

1472
01:04:26,585 --> 01:04:29,220
OF THE SORT AT NIH AND DOD AND 

1473
01:04:29,220 --> 01:04:30,722
OTHERS CAN CATALYZE.

1474
01:04:30,722 --> 01:04:33,091
AND I WAS VERY ENCOURAGED TO SEE

1475
01:04:33,091 --> 01:04:37,796
A COUPLE OF PROMISING PROPOSALS 

1476
01:04:37,796 --> 01:04:40,265
LOOKING AT LYMPHEDEMA ARE 

1477
01:04:40,265 --> 01:04:41,232
ADVANCING THROUGH THE ARPA-H 

1478
01:04:41,232 --> 01:04:42,634
PROGRAM AND NEED MORE OF THAT TO

1479
01:04:42,634 --> 01:04:44,169
TAKE IT TO THE NEXT LEVEL.

1480
01:04:44,169 --> 01:04:46,605
WITH THAT I'D LOVE TO TURN IT 

1481
01:04:46,605 --> 01:04:56,648
OVER TO MY COLLEAGUE, KASI 

1482
01:04:56,648 --> 01:04:58,984
GROSVENOR AND CAN SHARE HER 

1483
01:04:58,984 --> 01:05:00,719
EXPERIENCE WITH LYMPHEDEMA.

1484
01:05:00,719 --> 01:05:02,754
>> GOOD MORNING AND THANK
YOU 

1485
01:05:02,754 --> 01:05:04,656
FOR THE INVITATION TO THE 

1486
01:05:04,656 --> 01:05:05,724
COMMISSION.

1487
01:05:05,724 --> 01:05:06,591
I'VE BEEN LISTENING ON THESE 

1488
01:05:06,591 --> 01:05:08,994
SINCE THE INCEPTION EARLIER THIS

1489
01:05:08,994 --> 01:05:13,798
YEAR AND JUST WANT TO COMMEND 

1490
01:05:13,798 --> 01:05:16,835
THE COMMISSION FOR PRIORITIZING 

1491
01:05:16,835 --> 01:05:18,236
THE PATIENT PERSPECTIVE AND IT'S

1492
01:05:18,236 --> 01:05:19,704
VALIDATING FOR PATIENTS TO SEE 

1493
01:05:19,704 --> 01:05:21,706
THE WORK HAPPENING.

1494
01:05:21,706 --> 01:05:24,476
I WANT TO MENTION NIH HAS BEEN 

1495
01:05:24,476 --> 01:05:26,378
DEE

1496
01:05:26,378 --> 01:05:27,846
DEE

1497
01:05:27,846 --> 01:05:31,983
DEEPLY INSTRUMENTAL IN MY FAMILY

1498
01:05:31,983 --> 01:05:34,419
AND EXTENDED FAMILY IN THE LAST 

1499
01:05:34,419 --> 01:05:37,122
DECADE AND HAVE A LOT OF HOPE 

1500
01:05:37,122 --> 01:05:38,690
WATCHING WHAT WILL IMPACT MY OWN

1501
01:05:38,690 --> 01:05:40,358
LIFE AND THE LIFE OF MY KIDS AND

1502
01:05:40,358 --> 01:05:45,263
THE MILLIONS OF OTHER WOMEN 

1503
01:05:45,263 --> 01:05:47,699
LIVING WITH LYMPHEDEMA AMONGST 

1504
01:05:47,699 --> 01:05:49,200
OTHER LYMPHATIC DISORDERS.

1505
01:05:49,200 --> 01:05:51,836
I'M 43-YEAR-OLD PATIENT AND 

1506
01:05:51,836 --> 01:05:53,405
SIMILAR TO THE TIME LINE 

1507
01:05:53,405 --> 01:05:56,141
JONATHAN MENTIONED EARLIER.

1508
01:05:56,141 --> 01:05:58,810
I STARTED REPORTING SYMPTOMS OF 

1509
01:05:58,810 --> 01:06:00,779
LYMPHEDEMA FROM PROBABLY EVEN 

1510
01:06:00,779 --> 01:06:01,980
PREPUBERTY AND CERTAINLY AT THE 

1511
01:06:01,980 --> 01:06:05,950
TIME OF PUBERTY.

1512
01:06:05,950 --> 01:06:07,085
VISIBLE DISPROPORTION WAS ONE OF

1513
01:06:07,085 --> 01:06:09,220
THE THINGS THAT WAS EASILY SEEN 

1514
01:06:09,220 --> 01:06:14,059
IN PICTURES BUT PAIN AND 

1515
01:06:14,059 --> 01:06:15,660
BRUISING AND OTHER CHALLENGING 

1516
01:06:15,660 --> 01:06:17,996
SYMPTOMS WERE PROGRESSING OVER 

1517
01:06:17,996 --> 01:06:19,531
MY TEEN AGE YEARS THROUGH 

1518
01:06:19,531 --> 01:06:22,400
PREGNANCIES AND INTO MY 30s.

1519
01:06:22,400 --> 01:06:24,402
AT THE LATE 30s I WAS LISTED 

1520
01:06:24,402 --> 01:06:27,872
WITH HAVING SEVERE LIMITATIONS, 

1521
01:06:27,872 --> 01:06:29,841
DRAMATICALLY IMPACTING MY 

1522
01:06:29,841 --> 01:06:30,542
MOBILITY, STRENGTH, ENDURANCE 

1523
01:06:30,542 --> 01:06:32,243
AND QUALITY OF LIFE AND IT TRULY

1524
01:06:32,243 --> 01:06:36,314
WAS IMPACTING MY ABILITY TO 

1525
01:06:36,314 --> 01:06:36,715
FUNCTION.

1526
01:06:36,715 --> 01:06:39,217
I DID NOT RECEIVE A DIAGNOSIS 

1527
01:06:39,217 --> 01:06:41,453
UNTIL I FOUND A LYMPHEDEMA 

1528
01:06:41,453 --> 01:06:42,620
FOUNDATION BROCHURE AND THAT'S 

1529
01:06:42,620 --> 01:06:44,089
WHY THE FOCUS ON PATIENT TOOLS 

1530
01:06:44,089 --> 01:06:48,493
IS ONE OF THE VERY CRITICAL 

1531
01:06:48,493 --> 01:06:48,860
COMPONENTS.

1532
01:06:48,860 --> 01:06:51,863
I HAVE PAID ATTENTION 

1533
01:06:51,863 --> 01:06:57,035
PARTICULARLY TO THIS WORKFORCE 

1534
01:06:57,035 --> 01:06:57,736
STREAM.

1535
01:06:57,736 --> 01:06:59,370
IF I HAD NOT KNOWN ABOUT A 

1536
01:06:59,370 --> 01:07:02,707
PAMPHLET A FAMILY MEMBER FOUND 

1537
01:07:02,707 --> 01:07:03,608
AT A DIFFERENT MEDICAL 

1538
01:07:03,608 --> 01:07:04,642
CONFERENCE, I WOULD HAVE NEVER 

1539
01:07:04,642 --> 01:07:06,845
KNOWN TO GO DOWN THE PATH OF 

1540
01:07:06,845 --> 01:07:07,812
GETTING A DIAGNOSIS AND AS 

1541
01:07:07,812 --> 01:07:09,347
SEVERAL OF YOUR OTHER SPEAKERS 

1542
01:07:09,347 --> 01:07:12,884
HAVE MENTIONED, IT TOOK MANY 

1543
01:07:12,884 --> 01:07:15,587
MONTHS OF A WAIT LIST TO EVEN 

1544
01:07:15,587 --> 01:07:18,790
GET INTO A CERTIFIED LYMPHEDEMA 

1545
01:07:18,790 --> 01:07:19,057
THERAPIST.

1546
01:07:19,057 --> 01:07:21,259
BECAUSE OF THAT, ONCE I GOT IN 

1547
01:07:21,259 --> 01:07:23,128
AND KNEW WHAT THE DIAGNOSIS WAS 

1548
01:07:23,128 --> 01:07:24,462
I CONSIDERED MYSELF ONE OF THE 

1549
01:07:24,462 --> 01:07:27,732
LUCKY ONES BECAUSE I DID HAVE 

1550
01:07:27,732 --> 01:07:30,068
GOOD INSURANCE THAT QUICKLY 

1551
01:07:30,068 --> 01:07:32,470
COVERED COMPRESSION GARMENTS AND

1552
01:07:32,470 --> 01:07:33,705
SOME OF THOSE THINGS.

1553
01:07:33,705 --> 01:07:35,573
AND I KNOW THAT NOT ALL PATIENTS

1554
01:07:35,573 --> 01:07:37,208
HAVE ACCESS TO THOSE THINGS AND 

1555
01:07:37,208 --> 01:07:38,243
THOSE ARE SOME OF THE CHALLENGES

1556
01:07:38,243 --> 01:07:40,912
THAT WE REALLY NEED TO GET TO.

1557
01:07:40,912 --> 01:07:45,383
I HAVE BEEN LIVING NOW WITH 

1558
01:07:45,383 --> 01:07:47,952
LYMPHEDEMA FOR THE LAST THREE 

1559
01:07:47,952 --> 01:07:49,354
YEARS AND I AM CURRENTLY 

1560
01:07:49,354 --> 01:07:52,257
MANAGING MY CONDITION WITH MORE 

1561
01:07:52,257 --> 01:07:54,659
THAN 50 TREATMENT MODALITIES ON 

1562
01:07:54,659 --> 01:07:56,895
EVEN GIVEN DAY OF MY LIFE 

1563
01:07:56,895 --> 01:07:59,831
USUALLY UPWARDS OF TWO HOURS OF 

1564
01:07:59,831 --> 01:08:00,498
CONSERVATIVE THERAPIES ACROSS A 

1565
01:08:00,498 --> 01:08:02,534
WIDE RANGE OF THINGS.

1566
01:08:02,534 --> 01:08:03,735
AND THOSE TREATMENT MODALITIES 

1567
01:08:03,735 --> 01:08:07,338
IN MANY CASES ARE NOT COVERED BY

1568
01:08:07,338 --> 01:08:07,605
INSURANCE.

1569
01:08:07,605 --> 01:08:10,642
THEY'RE PAID FOR OUT OF POCKET.

1570
01:08:10,642 --> 01:08:11,943
AND SO I VERY MUCH FEEL LIKE 

1571
01:08:11,943 --> 01:08:13,912
SOME OF THE CHALLENGES THAT HAVE

1572
01:08:13,912 --> 01:08:16,681
BEEN MENTIONED ARE CONSISTENT TO

1573
01:08:16,681 --> 01:08:19,784
WHAT I AM SEEING ACROSS THE 

1574
01:08:19,784 --> 01:08:20,051
COMMUNITY.

1575
01:08:20,051 --> 01:08:20,885
THE DELAY IN PROPER DIAGNOSIS IS

1576
01:08:20,885 --> 01:08:24,489
ONE OF THE MOST CRITICAL THINGS 

1577
01:08:24,489 --> 01:08:25,790
AND THAT IS WHY IT IS SO 

1578
01:08:25,790 --> 01:08:29,594
IMPORTANT FOR THIS TO BE IN ALL 

1579
01:08:29,594 --> 01:08:34,999
MEDICAL SCHOOL ONBOARD AND CMs 

1580
01:08:34,999 --> 01:08:37,035
AND THOSE LIKELY TO SEE THIS.

1581
01:08:37,035 --> 01:08:40,271
THE ONES THAT COME TO MIND ARE 

1582
01:08:40,271 --> 01:08:41,606
PEDIATRICS AND OB-GYN.

1583
01:08:41,606 --> 01:08:42,774
WE NEED THOSE DOCTORS 

1584
01:08:42,774 --> 01:08:45,877
RECOGNIZING THIS AND GETTING ON 

1585
01:08:45,877 --> 01:08:47,078
TO THAT EARLIER.

1586
01:08:47,078 --> 01:08:50,381
WE ALSO NEED ACCESS TO BETTER 

1587
01:08:50,381 --> 01:08:51,783
TOOLS.

1588
01:08:51,783 --> 01:08:53,685
I MENTIONED THE PAMPHLET FROM 

1589
01:08:53,685 --> 01:08:54,752
WHICH LED TO MY DIAGNOSIS BUT 

1590
01:08:54,752 --> 01:08:57,856
THERE'S A NUMBER OF OTHER TOOLS 

1591
01:08:57,856 --> 01:09:01,059
THAT CLINICIANS ARE ALL EXCITED 

1592
01:09:01,059 --> 01:09:04,729
TO RECEIVE AND VIEW SUCH AS THE 

1593
01:09:04,729 --> 01:09:06,097
CLINICIANS GUIDE AS MENTIONED.

1594
01:09:06,097 --> 01:09:07,432
WE NEED FOR THOSE RESOURCE TO 

1595
01:09:07,432 --> 01:09:09,033
EXIST BECAUSE IN THEIR ABSENCE 

1596
01:09:09,033 --> 01:09:10,802
PEOPLE GET THEIR MEDICAL ADVICE 

1597
01:09:10,802 --> 01:09:13,605
FROM TIKTOK WHICH CAN BE A VERY 

1598
01:09:13,605 --> 01:09:15,106
USEFUL WAY IT GET INFORMATION 

1599
01:09:15,106 --> 01:09:16,441
BUT IT'S NOT GETTING INTO THE 

1600
01:09:16,441 --> 01:09:18,910
HANDS OF WHO WE NEED TO GET IT 

1601
01:09:18,910 --> 01:09:19,077
IN.

1602
01:09:19,077 --> 01:09:23,114
AND SO TO WRAP UP WITH THREE 

1603
01:09:23,114 --> 01:09:25,350
WISHES THAT I WOULD SAY, 

1604
01:09:25,350 --> 01:09:27,285
INFLUENCING THAT INCLUSION INTO 

1605
01:09:27,285 --> 01:09:30,855
ALL MEDICAL SCHOOL AGENDA WOULD 

1606
01:09:30,855 --> 01:09:38,796
BE ONE OF MY BIGGEST WISH LISTS.

1607
01:09:38,796 --> 01:09:41,666
THE SECOND IS FOR RESEARCH MORE 

1608
01:09:41,666 --> 01:09:42,934
THE TREATMENT MODALITIES WE NEED

1609
01:09:42,934 --> 01:09:44,135
TO SEE AT LARGE SCALE.

1610
01:09:44,135 --> 01:09:45,803
WE NEED TO SEE IT TESTED AND I 

1611
01:09:45,803 --> 01:09:48,539
WOULD LIKE TO SEE MORE RESEARCH 

1612
01:09:48,539 --> 01:09:54,779
ON THAT AND THEN FUNDING FOR 

1613
01:09:54,779 --> 01:09:55,380
RESEARCH.

1614
01:09:55,380 --> 01:09:57,649
DEVELOP SOME BIOMARKER OR WAY TO

1615
01:09:57,649 --> 01:10:00,685
DIAGNOSIS SO PHYSICIANS FEEL 

1616
01:10:00,685 --> 01:10:00,952
CONFIDENT.

1617
01:10:00,952 --> 01:10:03,855
I WILL WRAP UP WITH SAYING THANK

1618
01:10:03,855 --> 01:10:05,623
YOU SO MUCH FOR CONTINUING TO 

1619
01:10:05,623 --> 01:10:07,759
FOCUS ON LYMPHATIC DISORDERS AND

1620
01:10:07,759 --> 01:10:09,794
FOR INCORPORATING PATIENTS INTO 

1621
01:10:09,794 --> 01:10:12,196
ALL THE WORK THAT YOU'RE DOING.

1622
01:10:12,196 --> 01:10:14,132
AND I PROMISE YOU IT MATTERS TO 

1623
01:10:14,132 --> 01:10:17,001
ME AND IT MATTERS TO A LOT OF 

1624
01:10:17,001 --> 01:10:18,102
OTHERS.

1625
01:10:18,102 --> 01:10:19,470
SO, CERTAINLY MY DEEPEST 

1626
01:10:19,470 --> 01:10:21,139
APPRECIATION FOR THIS COUNCIL.

1627
01:10:21,139 --> 01:10:22,507
THANK YOU.

1628
01:10:22,507 --> 01:10:23,408
>> THANK YOU.

1629
01:10:23,408 --> 01:10:24,509
AND IN THE INTEREST OF TIME 

1630
01:10:24,509 --> 01:10:29,213
LET'S MOVE QUICKLY TO THE NEXT 

1631
01:10:29,213 --> 01:10:33,851
SPEAKER, GUENTER KLOSE THE 

1632
01:10:33,851 --> 01:10:36,888
CERTIFIED INSTRUCTOR OF KLOSE 

1633
01:10:36,888 --> 01:10:39,691
TRAINING AROUND JOINED WITH 

1634
01:10:39,691 --> 01:10:41,392
LINDA HODGKIN'S A LYMPHEDEMA 

1635
01:10:41,392 --> 01:10:46,464
TEAM LEADER AT HARTFORD CENTER 

1636
01:10:46,464 --> 01:10:48,099
AND OUR PATIENT REPRESENTATIVE.

1637
01:10:48,099 --> 01:10:50,335
>> GOOD MORNING, EVERYONE.

1638
01:10:50,335 --> 01:10:53,171
MY NAME IS GUENTER KLOSE.

1639
01:10:53,171 --> 01:10:54,038
I'VE BEEN A CERTIFIED LYMPHEDEMA

1640
01:10:54,038 --> 01:11:04,449
THERAPIST FOR 40 YEARS.

1641
01:11:13,257 --> 01:11:16,260
I PROVIDE THE HIGHEST QUALITY OF

1642
01:11:16,260 --> 01:11:18,129
THERAPY AVAILABLE.

1643
01:11:18,129 --> 01:11:19,163
THE BIGGEST CHALLENGE THERAPISTS

1644
01:11:19,163 --> 01:11:20,999
FACE TODAY IS THE LACK OF 

1645
01:11:20,999 --> 01:11:25,203
ADEQUATE REIMBURSEMENT.

1646
01:11:25,203 --> 01:11:34,045
CURRENT REIMBURSEMENT RATES DO 

1647
01:11:34,045 --> 01:11:38,549
NOT REFLECT THE TIME SPENT WITH 

1648
01:11:38,549 --> 01:11:39,851
PATIENTS WITH LYMPHEDEMA.

1649
01:11:39,851 --> 01:11:43,454
LYMPHEDEMA THERAPY IS MUCH MORE 

1650
01:11:43,454 --> 01:11:44,655
THAN MANUAL LYMPHATIC DRAINAGE 

1651
01:11:44,655 --> 01:11:46,024
AND BANDAGING.

1652
01:11:46,024 --> 01:11:51,095
THE CORE COMPONENTS ARE MANUAL 

1653
01:11:51,095 --> 01:11:52,930
TECHNIQUES INCLUDING MANUAL 

1654
01:11:52,930 --> 01:11:55,600
LYMPHATIC DRAINAGE, COMPRESSION 

1655
01:11:55,600 --> 01:12:00,138
BAND AND BRANDING AND HOME 

1656
01:12:00,138 --> 01:12:01,305
EXERCISE PROGRAM AND PROVIDING 

1657
01:12:01,305 --> 01:12:02,974
INSTRUCTIONS IN SELF-CARE.

1658
01:12:02,974 --> 01:12:06,110
IT TAKES A HIGHLY MOTIVATE AND 

1659
01:12:06,110 --> 01:12:09,213
SKILLED THERAPIST TO PROVIDER 

1660
01:12:09,213 --> 01:12:13,351
COMPREHENSIVE DECONGESTIVE 

1661
01:12:13,351 --> 01:12:14,719
THERAPY.

1662
01:12:14,719 --> 01:12:16,354
BECAUSE OF INSUFFICIENT 

1663
01:12:16,354 --> 01:12:17,188
REIMBURSEMENT TREATMENT TIMES 

1664
01:12:17,188 --> 01:12:20,324
ARE BEING CUT SHORTER AND 

1665
01:12:20,324 --> 01:12:21,192
SHORTER.

1666
01:12:21,192 --> 01:12:23,261
IT IS IMPOSSIBLE TO PROVIDE 

1667
01:12:23,261 --> 01:12:25,263
EFFECTIVE LYMPHEDEMA CARE TO 

1668
01:12:25,263 --> 01:12:28,466
PATIENTS LIKE THESE IN 30, 40 OR

1669
01:12:28,466 --> 01:12:29,934
EVEN 60 MINUTES.

1670
01:12:29,934 --> 01:12:33,571
IT LEAVES PATIENTS WITH 

1671
01:12:33,571 --> 01:12:35,306
INADEQUATE OUTCOMES WHO CARRY 

1672
01:12:35,306 --> 01:12:37,008
OVER AND PRONE TO RELAPSES AND 

1673
01:12:37,008 --> 01:12:41,279
HOSPITALIZATION.

1674
01:12:41,279 --> 01:12:45,283
CURRENT REIMBURSEMENT DOES NOT 

1675
01:12:45,283 --> 01:12:46,651
RECOGNIZE THE ADDITIONAL SKILL 

1676
01:12:46,651 --> 01:12:49,020
LEVEL THAT HAS TO BE ACQUIRED BY

1677
01:12:49,020 --> 01:12:53,224
THERAPISTS BEFORE PROVIDING 

1678
01:12:53,224 --> 01:12:55,259
EFFECTIVE LYMPHEDEMA CARE.

1679
01:12:55,259 --> 01:12:57,728
ADDITIONALLY, THERE'S NO 

1680
01:12:57,728 --> 01:13:01,199
REIMBURSEMENT FOR THE FITTING OF

1681
01:13:01,199 --> 01:13:03,868
EXPRESSION GARMENTS.

1682
01:13:03,868 --> 01:13:05,937
THE AMOUNT OF TIME SPENT 

1683
01:13:05,937 --> 01:13:07,772
COMPLETING THE NECESSARY 

1684
01:13:07,772 --> 01:13:09,874
PAPERWORK HAS UNREASONABLY 

1685
01:13:09,874 --> 01:13:11,275
INCREASED SINCE THE PASSING OF 

1686
01:13:11,275 --> 01:13:20,418
THE LYMPHEDEMA TREATMENT ACT.

1687
01:13:20,418 --> 01:13:30,962
IT'S IRONIC WHILE LYMPHEDEMA IS 

1688
01:13:33,097 --> 01:13:34,398
MORE GETS MORE TREATMENT WAITING

1689
01:13:34,398 --> 01:13:36,601
TIME IS GETTING LONGER AND 

1690
01:13:36,601 --> 01:13:39,737
NUMBER OF THERAPIST DECREASING 

1691
01:13:39,737 --> 01:13:41,038
BECAUSE OF UNREASONABLE 

1692
01:13:41,038 --> 01:13:41,572
PRODUCTIVITY PRESSURE AND 

1693
01:13:41,572 --> 01:13:47,111
WORKING CONDITIONS.

1694
01:13:47,111 --> 01:13:50,214
WE DO RECOGNIZE THAT FEWER 

1695
01:13:50,214 --> 01:13:52,717
SECONDARY BREAST CANCER RELATED 

1696
01:13:52,717 --> 01:13:57,855
LYMPHEDEMA IS DECLINING, 

1697
01:13:57,855 --> 01:14:02,360
HOWEVER, THE NUMBER OF OBESITY 

1698
01:14:02,360 --> 01:14:04,262
ASSOCIATED AND ORTHOPEDIC 

1699
01:14:04,262 --> 01:14:10,968
RELATED EDEMAS AND LYMPHEDEMAS 

1700
01:14:10,968 --> 01:14:11,936
ARE INCREASING.

1701
01:14:11,936 --> 01:14:15,173
HOW WILL WE FACE THIS PROBLEM IN

1702
01:14:15,173 --> 01:14:16,207
THE FUTURE WITHOUT A SUFFICIENT 

1703
01:14:16,207 --> 01:14:24,482
NUMBER OF PROVIDERS?

1704
01:14:24,482 --> 01:14:28,152
MY THREE WISHES IS NUMBER ONE, 

1705
01:14:28,152 --> 01:14:30,121
SUFFICIENT REIMBURSEMENT FOR THE

1706
01:14:30,121 --> 01:14:33,191
SKILLS WORK AND TIME REQUIRED TO

1707
01:14:33,191 --> 01:14:33,758
PROVIDER BEST PRACTICE 

1708
01:14:33,758 --> 01:14:44,035
LYMPHEDEMA CARE.

1709
01:14:48,773 --> 01:14:51,842
A CODE FOR REIMBURSEMENT THERAPY

1710
01:14:51,842 --> 01:14:56,514
AND ADEQUATE REIMBURSEMENT FOR 

1711
01:14:56,514 --> 01:14:59,016
COMPRESSION GARMENT AMERICA AND 

1712
01:14:59,016 --> 01:14:59,917
FITTING.

1713
01:14:59,917 --> 01:15:01,919
CARE IS ALREADY LIMITED.

1714
01:15:01,919 --> 01:15:04,889
WITHOUT CHANGES, PATIENTS WILL 

1715
01:15:04,889 --> 01:15:07,558
LOSE ACCESS TO QUALITY 

1716
01:15:07,558 --> 01:15:08,993
LYMPHEDEMA CARE AND EXPERIENCE 

1717
01:15:08,993 --> 01:15:12,363
SERIOUS COMPLICATIONS AND 

1718
01:15:12,363 --> 01:15:12,763
HOSPITALIZATIONS.

1719
01:15:12,763 --> 01:15:13,731
THANK YOU SO MUCH FOR YOUR 

1720
01:15:13,731 --> 01:15:15,933
ATTENTION AND I WILL HAND IT 

1721
01:15:15,933 --> 01:15:23,541
OVER TO LINDA HODGKIN'S.

1722
01:15:23,541 --> 01:15:24,508
-- HODGKINS.

1723
01:15:24,508 --> 01:15:25,142
>> HELLO.

1724
01:15:25,142 --> 01:15:28,946
I'M AN OCCUPATIONAL THERAPIST 

1725
01:15:28,946 --> 01:15:33,017
WITH OVER 27 YEARS OF TREATING 

1726
01:15:33,017 --> 01:15:35,987
INCLUSIVELY PATIENTS WITH 

1727
01:15:35,987 --> 01:15:37,788
LYMPHEDEMA BOTH AS A PRIVATE 

1728
01:15:37,788 --> 01:15:40,691
PACTS OWNER AND MANAGER OF 45 

1729
01:15:40,691 --> 01:15:42,360
CERTIFIED LYMPHEDEMA THERAPISTS 

1730
01:15:42,360 --> 01:15:51,869
ACROSS OUT PATIENT AND SUBACUTE 

1731
01:15:51,869 --> 01:15:52,336
SYMPTOMS.

1732
01:15:52,336 --> 01:15:56,507
I'M HERE TO LOOK AT 

1733
01:15:56,507 --> 01:15:58,509
UNPRECEDENTED CHALLENGES AT OUR 

1734
01:15:58,509 --> 01:15:58,843
PROFESSIONAL.

1735
01:15:58,843 --> 01:16:05,516
I WANT TO VALIDATE THE 

1736
01:16:05,516 --> 01:16:08,519
ASSESSMENT OF BARRIERS.

1737
01:16:08,519 --> 01:16:15,426
WE MEET DEMANDS OF PROVIDING CDT

1738
01:16:15,426 --> 01:16:21,532
YET A MULTI-FACETED SET OF 

1739
01:16:21,532 --> 01:16:25,202
ISSUES LED TO DECLINE IN BEST 

1740
01:16:25,202 --> 01:16:27,571
PRACTICE TREATMENTS AND PATIENT 

1741
01:16:27,571 --> 01:16:27,872
OUTCOMES.

1742
01:16:27,872 --> 01:16:30,841
LOW REIMBURSEMENT RATES, 

1743
01:16:30,841 --> 01:16:33,110
RESTRICTIVE INSURANCE CAPS AND 

1744
01:16:33,110 --> 01:16:34,979
PRODUCTIVITY DEMANDS HAVE ERODED

1745
01:16:34,979 --> 01:16:38,115
TREATMENT TIMES AND LEFT LITTLE 

1746
01:16:38,115 --> 01:16:41,218
CAPACITY FOR CLT'S TO DELIVER 

1747
01:16:41,218 --> 01:16:44,221
CDT AS INTENDED.

1748
01:16:44,221 --> 01:16:45,856
THIS RESULTS IN A TREATMENT AND 

1749
01:16:45,856 --> 01:16:46,824
COMPROMISED OUTCOME FOR PATIENTS

1750
01:16:46,824 --> 01:16:48,859
WHO MISS OUT ON CRITICAL 

1751
01:16:48,859 --> 01:16:51,329
COMPONENTS OF CDT.

1752
01:16:51,329 --> 01:16:52,129
A SIGNIFICANT PART OF THIS 

1753
01:16:52,129 --> 01:16:53,731
CRISIS STEMS FROM A PERVASIVE 

1754
01:16:53,731 --> 01:16:58,969
LACK OF CDT AMONG SYSTEMS AND 

1755
01:16:58,969 --> 01:17:01,205
INSURANCE PROVIDERS.

1756
01:17:01,205 --> 01:17:03,374
PERPETUATING A CYCLE OF CARE.

1757
01:17:03,374 --> 01:17:04,875
WITHOUT EFFECTIVE MANDATES 

1758
01:17:04,875 --> 01:17:06,410
THERE'S NO ACCOUNTABILITY TO 

1759
01:17:06,410 --> 01:17:08,612
PROTECT PATIENTS FROM 

1760
01:17:08,612 --> 01:17:09,547
INEFFECTIVE TREATMENT THAT FALL 

1761
01:17:09,547 --> 01:17:11,549
SHORT OF BEST PRACTICE.

1762
01:17:11,549 --> 01:17:14,485
THIS GAP ENDANGERS PATIENTS AND 

1763
01:17:14,485 --> 01:17:16,754
DIMINISHES THE VALUE OF OUR 

1764
01:17:16,754 --> 01:17:19,990
SPECIALIZED CARE.

1765
01:17:19,990 --> 01:17:21,092
THE RECENT PASSAGE BROUGHT MUCH 

1766
01:17:21,092 --> 01:17:23,928
NEEDED HOPE TO OUR FIELD.

1767
01:17:23,928 --> 01:17:26,697
HOWEVER, IT'S IMPLEMENTATION HAS

1768
01:17:26,697 --> 01:17:29,700
UNEXPECTEDLY ADDED NEW 

1769
01:17:29,700 --> 01:17:32,002
ADMINISTRATIVE BURDENS FOR 

1770
01:17:32,002 --> 01:17:38,409
PATIENTS IN CLTs NOW TRYING TO 

1771
01:17:38,409 --> 01:17:41,178
NAVIGATE THE COMPLEX 

1772
01:17:41,178 --> 01:17:43,714
COMPLEXITIES OF GETTING 

1773
01:17:43,714 --> 01:17:43,981
GARMENTS.

1774
01:17:43,981 --> 01:17:47,151
THIS ADMINISTRATIVE TOLL HAS 

1775
01:17:47,151 --> 01:17:50,521
TAKEN AN IMMENSE STRAIN AND 

1776
01:17:50,521 --> 01:17:53,124
CONTRIBUTING TO AN ALARMING RATE

1777
01:17:53,124 --> 01:17:54,925
OF RESIGNATION.

1778
01:17:54,925 --> 01:17:57,194
WITH EACH DEPARTURE THE BARRIER 

1779
01:17:57,194 --> 01:17:59,130
TO ACCESS QUALITY CARE ONLY 

1780
01:17:59,130 --> 01:17:59,330
GROWS.

1781
01:17:59,330 --> 01:18:02,032
YET I'M DEEPLY HOPEFUL ABOUT THE

1782
01:18:02,032 --> 01:18:05,403
POTENTIAL ROLE CLTs CAN PLAY IN 

1783
01:18:05,403 --> 01:18:09,206
TRANSFORMING HEALTH CARE AND 

1784
01:18:09,206 --> 01:18:13,010
OUTCOMES BEYOND TRADITIONAL 

1785
01:18:13,010 --> 01:18:13,310
LYMPHEDEMA.

1786
01:18:13,310 --> 01:18:15,479
THEY COULD BE KEY PLAYERS IN OUR

1787
01:18:15,479 --> 01:18:17,114
MEDICAL SYSTEM AND EFFORTS TO 

1788
01:18:17,114 --> 01:18:20,418
REDUCE INFLECTION AND WOUND 

1789
01:18:20,418 --> 01:18:21,218
COMPLICATIONSED AND 

1790
01:18:21,218 --> 01:18:22,453
RE-HOSPITALIZATIONS BY APPLYING 

1791
01:18:22,453 --> 01:18:25,222
COMPONENTS OF CDT TO A BROADER 

1792
01:18:25,222 --> 01:18:27,858
RANGE OF PATIENTS WITH EDEMA 

1793
01:18:27,858 --> 01:18:28,726
CONDITIONS.

1794
01:18:28,726 --> 01:18:32,296
ACUTE CARE OUR TEAM IS SEEING 

1795
01:18:32,296 --> 01:18:33,864
THE IMPACT OF THIS WORK.

1796
01:18:33,864 --> 01:18:35,232
OUR TEAM IS COLLECTING DATA 

1797
01:18:35,232 --> 01:18:37,501
DEMONSTRATING INTERVENTIONS 

1798
01:18:37,501 --> 01:18:41,071
REDUCE 30 DAY HOSPITALIZATIONS 

1799
01:18:41,071 --> 01:18:44,108
FOR PATIENTS WITH DIAGNOSES SUCH

1800
01:18:44,108 --> 01:18:46,911
AS CELLULITIS AND ORTHOPEDIC 

1801
01:18:46,911 --> 01:18:50,714
TRAUMA AND POST-SURGICAL EDEMA.

1802
01:18:50,714 --> 01:18:52,950
WITH STRATEGIC SUPPORT THEY CAN 

1803
01:18:52,950 --> 01:18:54,785
SERVE THE ACUTE CARE TEAM 

1804
01:18:54,785 --> 01:18:57,054
REDUCING COMPLICATIONS AND 

1805
01:18:57,054 --> 01:18:57,888
ENHANCING RECOVERY FOR PATIENTS 

1806
01:18:57,888 --> 01:19:02,059
WITH EDEMA-RELATED NEEDS.

1807
01:19:02,059 --> 01:19:03,727
THIS VISION FOR OUR PROFESSION 

1808
01:19:03,727 --> 01:19:08,999
HOWEVER, IS UNDER GRAVE THREAT.

1809
01:19:08,999 --> 01:19:11,535
OBTAINING THE CREDENTIAL IS 

1810
01:19:11,535 --> 01:19:13,604
DESPERATELY NEEDED AS HOSPITAL 

1811
01:19:13,604 --> 01:19:17,074
SYSTEMS HAVE DECREASED OR 

1812
01:19:17,074 --> 01:19:18,242
ELIMINATING EDUCATIONAL FUNDING 

1813
01:19:18,242 --> 01:19:19,076
LEAVING THERAPISTS TO COVER THE 

1814
01:19:19,076 --> 01:19:20,945
COST AND COMMITMENT ON THEIR 

1815
01:19:20,945 --> 01:19:22,313
OWN.

1816
01:19:22,313 --> 01:19:23,814
ADDITIONALLY, IMPROVED 

1817
01:19:23,814 --> 01:19:24,615
REIMBURSEMENT STRUCTURES ARE 

1818
01:19:24,615 --> 01:19:28,719
ESSENTIAL TO REFLECT THE VALUE 

1819
01:19:28,719 --> 01:19:31,789
OF CDT AS A HIGHLY SKILLED 

1820
01:19:31,789 --> 01:19:33,190
SERVICE.

1821
01:19:33,190 --> 01:19:35,426
TO SUSTAIN THE PROFESSION I 

1822
01:19:35,426 --> 01:19:38,095
ADVOCATE FOR EDUCATIONAL FUNDING

1823
01:19:38,095 --> 01:19:41,198
FOR CLP CERTIFICATION TO 

1824
01:19:41,198 --> 01:19:42,366
CHAMPION REIMBURSEMENT REFORMS 

1825
01:19:42,366 --> 01:19:45,703
THAT RECOGNIZE THE IMPORTANCE OF

1826
01:19:45,703 --> 01:19:46,804
CDT AND ESTABLISH ACCOUNTABILITY

1827
01:19:46,804 --> 01:19:49,173
STANDARD TO ENSURE THE DELIVERY 

1828
01:19:49,173 --> 01:19:51,609
OF EFFECTIVE MEANINGFUL CDT.

1829
01:19:51,609 --> 01:19:52,543
ONLY BY FOSTERING THE SUPPORTS 

1830
01:19:52,543 --> 01:19:56,280
CAN WE HOPE TO REGAIN AND 

1831
01:19:56,280 --> 01:19:57,848
REINVIGORATE THIS MOBILE 

1832
01:19:57,848 --> 01:19:58,148
PROFESSION.

1833
01:19:58,148 --> 01:20:02,720
WE MUST ACT NOW TO TRAIN THE 

1834
01:20:02,720 --> 01:20:03,754
PROFESSIONALS BEFORE THEY 

1835
01:20:03,754 --> 01:20:05,155
ABANDON THE FIELD LEAVING 

1836
01:20:05,155 --> 01:20:07,958
PATIENTS AND HEALTH CARE SYSTEMS

1837
01:20:07,958 --> 01:20:09,693
WITHOUT THEIR INDISPENSABLE 

1838
01:20:09,693 --> 01:20:09,960
EXPERTISE.

1839
01:20:09,960 --> 01:20:16,834
THANK YOU.

1840
01:20:16,834 --> 01:20:20,104
I'LL NOW TURN IT OVER TO 

1841
01:20:20,104 --> 01:20:20,337
YOLANDA.

1842
01:20:20,337 --> 01:20:24,108
>> I'M YOLANDA MARTIN A
PRIMARY 

1843
01:20:24,108 --> 01:20:25,743
LYMPHEDEMA PATIENT WITH 

1844
01:20:25,743 --> 01:20:26,410
BILATERAL LYMPHEDEMA.

1845
01:20:26,410 --> 01:20:29,113
IT WAS 28 YEARS FROM THE ONSET 

1846
01:20:29,113 --> 01:20:32,016
OF MY LYMPHEDEMA UNTIL I WAS 

1847
01:20:32,016 --> 01:20:33,217
DIAGNOSED AND I ACTUALLY 

1848
01:20:33,217 --> 01:20:34,618
DIAGNOSED MYSELF.

1849
01:20:34,618 --> 01:20:38,289
I CURRENTLY HAVE AN OUTSTANDING 

1850
01:20:38,289 --> 01:20:39,857
LYMPHEDEMA THERAPIST WHO IS 

1851
01:20:39,857 --> 01:20:44,395
CONSTANTLY EDUCATING AND 

1852
01:20:44,395 --> 01:20:45,229
EMPOWERING ME.

1853
01:20:45,229 --> 01:20:46,997
HOWEVER, I'M VERY CONCERNED 

1854
01:20:46,997 --> 01:20:51,235
ABOUT THE SUPPLY OF HIGHLY 

1855
01:20:51,235 --> 01:20:52,369
QUALIFIED LYMPHEDEMA THERAPISTS 

1856
01:20:52,369 --> 01:20:54,038
AND MY FUTURE CARE.

1857
01:20:54,038 --> 01:20:57,875
MY TOP THREE WISHES ARE AS 

1858
01:20:57,875 --> 01:20:58,909
FOLLOWS, NUMBER ONE, LYMPHEDEMA 

1859
01:20:58,909 --> 01:21:00,611
TREATMENT CENTERS ARE NEEDED TO 

1860
01:21:00,611 --> 01:21:04,248
ENSURE MULTIPLE ASPECTS OF THE 

1861
01:21:04,248 --> 01:21:05,716
PATIENT'S LYMPHEDEMA MANAGEMENT 

1862
01:21:05,716 --> 01:21:08,752
ARE ADDRESSED INCLUDING BUT NOT 

1863
01:21:08,752 --> 01:21:11,255
LIMITED TO OFFERING SERVICES 

1864
01:21:11,255 --> 01:21:18,395
SUCH AS FITTING AND SUPPLY OF 

1865
01:21:18,395 --> 01:21:20,364
COMPRESSION GARMENT , EDUCATION 

1866
01:21:20,364 --> 01:21:22,900
ON SELF-CARE AND TECHNIQUES AND 

1867
01:21:22,900 --> 01:21:24,668
SUPPORT GROUPS AND COUNSELING 

1868
01:21:24,668 --> 01:21:25,903
SERVICES AND PROVIDING REFERRALS

1869
01:21:25,903 --> 01:21:29,206
TO OTHER SPECIALISTS.

1870
01:21:29,206 --> 01:21:31,442
NUMBER TWO, ONGOING LYMPHEDEMA 

1871
01:21:31,442 --> 01:21:33,844
EDUCATION IS NEEDED TO ENSURE 

1872
01:21:33,844 --> 01:21:36,180
SUCCESSFUL LONG-TERM MANAGEMENT.

1873
01:21:36,180 --> 01:21:39,516
THAT IS EDUCATION THAT EMPOWERS 

1874
01:21:39,516 --> 01:21:42,286
US, THE PATIENT, TO FOCUS ON 

1875
01:21:42,286 --> 01:21:43,988
INCREASING OUR KNOWLEDGE SKILLS 

1876
01:21:43,988 --> 01:21:48,092
AND MOTIVATION TO ENSURE A 

1877
01:21:48,092 --> 01:21:49,193
SUCCESSFUL OUTCOME.

1878
01:21:49,193 --> 01:21:52,529
AND THREE, COLLABORATION AMONG 

1879
01:21:52,529 --> 01:21:54,932
THE PATIENT AND HEALTH CARE TEAM

1880
01:21:54,932 --> 01:21:57,868
TO INCLUDE DIETITIANS AND TO 

1881
01:21:57,868 --> 01:22:00,704
PROVIDE NUTRITIONAL COUNSELLING 

1882
01:22:00,704 --> 01:22:05,209
ON HEALTHY EATING BEHAVIORS.

1883
01:22:05,209 --> 01:22:08,579
DERMATOLOGISTS ON SKIN 

1884
01:22:08,579 --> 01:22:10,681
MOISTURIZATION AND SIGNS AND 

1885
01:22:10,681 --> 01:22:14,184
SYMPTOMS OF CELLULITIS AND 

1886
01:22:14,184 --> 01:22:15,753
ADDRESSING BODY IMAGE CONCERNS, 

1887
01:22:15,753 --> 01:22:18,188
TREATMENT CALLS, SOCIAL SUPPORT,

1888
01:22:18,188 --> 01:22:21,125
EMOTIONAL DISTRESS FROM THE 

1889
01:22:21,125 --> 01:22:24,528
CHALLENGES WHICH CAN BE VERY 

1890
01:22:24,528 --> 01:22:26,664
GREAT OF LIVING WITH LYMPHEDEMA 

1891
01:22:26,664 --> 01:22:28,599
AND THE LIFE LONG MANAGEMENT 

1892
01:22:28,599 --> 01:22:31,902
ACTIVITIES NEEDED FOR A 

1893
01:22:31,902 --> 01:22:33,037
SUCCESSFUL OUTCOME.

1894
01:22:33,037 --> 01:22:36,340
SO I'D LIKE TO ASK THE TASK 

1895
01:22:36,340 --> 01:22:39,343
FORCE TO ACT NOW TO GRANT 

1896
01:22:39,343 --> 01:22:41,779
GUENTER'S THREE WISHES TO 

1897
01:22:41,779 --> 01:22:44,214
ADVOCATE TREMENDOUS REQUEST AND 

1898
01:22:44,214 --> 01:22:48,018
SUPPORT AND TO EVEN CONSIDER MY 

1899
01:22:48,018 --> 01:22:49,353
WISHES SO THAT ME AND OTHER 

1900
01:22:49,353 --> 01:22:55,059
LYMPHEDEMA PATIENTS WILL NOT 

1901
01:22:55,059 --> 01:22:56,527
EXPERIENCE THE GROSSLY 

1902
01:22:56,527 --> 01:22:58,495
DETRIMENTAL AFFECTS OF THE 

1903
01:22:58,495 --> 01:22:59,730
HIGHLY TRAINED LYMPHEDEMA 

1904
01:22:59,730 --> 01:23:02,166
THERAPISTS WHO CONTINUOUSLY 

1905
01:23:02,166 --> 01:23:04,535
SHARING A WEALTH OF INFORMATION 

1906
01:23:04,535 --> 01:23:07,371
TO ME AND OTHER LYMPHEDEMA 

1907
01:23:07,371 --> 01:23:07,638
PATIENTS.

1908
01:23:07,638 --> 01:23:09,139
THANK YOU FOR THE OPPORTUNITY TO

1909
01:23:09,139 --> 01:23:09,406
SPEAK.

1910
01:23:09,406 --> 01:23:11,008
>> THANK YOU VERY MUCH,
GUENTER,

1911
01:23:11,008 --> 01:23:12,276
LINDA AND YOLANDA.

1912
01:23:12,276 --> 01:23:15,245
THIS WAS VERY POWERFUL.

1913
01:23:15,245 --> 01:23:17,948
OUR NEXT SPEAKERS ARE WILL 

1914
01:23:17,948 --> 01:23:21,552
REPICCI PRESIDENT AND CHIEF 

1915
01:23:21,552 --> 01:23:27,791
EXECUTIVE OFFICER OF LEARN AND 

1916
01:23:27,791 --> 01:23:30,294
VERONICA SENERIZ.

1917
01:23:30,294 --> 01:23:30,828
THE FLOOR IS YOURS.

1918
01:23:30,828 --> 01:23:36,734
>> THANK YOU, MUCH
APPRECIATES.

1919
01:23:36,734 --> 01:23:41,705
I'D RATHER JUST GIVE MY TIME TO 

1920
01:23:41,705 --> 01:23:44,508
YOLANDA AND HEAR HER.

1921
01:23:44,508 --> 01:23:46,543
AND THANK YOU TO THOSE LIVING 

1922
01:23:46,543 --> 01:23:48,746
WITH LYMPHATIC DISEASE AND 

1923
01:23:48,746 --> 01:23:50,647
FRANCI YOU WERE GREAT.

1924
01:23:50,647 --> 01:23:52,950
THANK YOU FOR THE NATIONAL 

1925
01:23:52,950 --> 01:23:53,250
COMMISSION.

1926
01:23:53,250 --> 01:23:54,384
I RECOGNIZE WHAT AN INCREDIBLE 

1927
01:23:54,384 --> 01:23:57,855
AMOUNT OF WORK IT IS TO BE ON 

1928
01:23:57,855 --> 01:24:02,025
THE COMMISSION AND SELEN, YOU'VE

1929
01:24:02,025 --> 01:24:07,064
BEEN AN ADVOCATE FOR SO MANY 

1930
01:24:07,064 --> 01:24:07,264
YEARS.

1931
01:24:07,264 --> 01:24:09,500
I CAN'T THANK YOU ENOUGH AND OUR

1932
01:24:09,500 --> 01:24:11,135
CO-FOUNDER AND MELISSA ALDRIDGE 

1933
01:24:11,135 --> 01:24:16,840
NOW A CHAIR OF THE BOARD OF 

1934
01:24:16,840 --> 01:24:27,284
DIRECTORS AND 57D 50UR --.

1935
01:24:28,318 --> 01:24:29,486
I JOINED THE ORGANIZATION 13 

1936
01:24:29,486 --> 01:24:34,625
YEARS AGO AT THAT TIME I KNEW 

1937
01:24:34,625 --> 01:24:37,761
NOTHING ABOUT LYMPHEDEMA AND 

1938
01:24:37,761 --> 01:24:38,929
LYMPHATIC DISEASES BUT BECAME 

1939
01:24:38,929 --> 01:24:41,398
CURIOUS HOW WAS IT POSSIBLE WE 

1940
01:24:41,398 --> 01:24:45,202
HAD THE DISEASE LIKE LYMPHEDEMA 

1941
01:24:45,202 --> 01:24:47,471
THAT AFFECTS UP TO 10 MILLION 

1942
01:24:47,471 --> 01:24:49,173
GLOBALLY AND NO ONE I TALKED TO 

1943
01:24:49,173 --> 01:24:49,840
HEARD OF IT?

1944
01:24:49,840 --> 01:24:52,843
IN THE YEARS THAT FOLLOW, 

1945
01:24:52,843 --> 01:24:53,811
LYMPHEDEMA WOULD JOINED THE 

1946
01:24:53,811 --> 01:24:56,313
CONVERSATION THANKS TO ADVOCATES

1947
01:24:56,313 --> 01:24:56,613
HERE TODAY.

1948
01:24:56,613 --> 01:24:58,549
AND AGAIN THE PROJECTION UP TO 

1949
01:24:58,549 --> 01:25:00,384
17 MILLION WOMEN POTENTIALLY 

1950
01:25:00,384 --> 01:25:02,352
WITH THIS DISEASE IN THE UNITED 

1951
01:25:02,352 --> 01:25:12,896
STATES WAS AS AS -- ASTOUNDING 

1952
01:25:19,002 --> 01:25:19,436
OF THE DISEASE.

1953
01:25:19,436 --> 01:25:21,772
THE MAJOR CHALLENGES FOR THOSE 

1954
01:25:21,772 --> 01:25:23,040
LIVING WITH LYMPHATIC DISEASES 

1955
01:25:23,040 --> 01:25:26,210
AND THEIR FAMILIES FROM MY 

1956
01:25:26,210 --> 01:25:27,211
PERSPECTIVE IS UNDER FORMED 

1957
01:25:27,211 --> 01:25:30,380
MEDICAL PRACTITIONERS.

1958
01:25:30,380 --> 01:25:32,249
SINCE LYMPHATICS HAS BEEN ALL 

1959
01:25:32,249 --> 01:25:37,688
BUT IGNORED IN MEDICAL SCHOOLS 

1960
01:25:37,688 --> 01:25:39,556
AND LACK OF EDUCATION.

1961
01:25:39,556 --> 01:25:42,359
THE LACK OF PHARMACEUTICAL 

1962
01:25:42,359 --> 01:25:42,659
TREATMENTS.

1963
01:25:42,659 --> 01:25:43,427
INSURANCE ISSUES, GETTING 

1964
01:25:43,427 --> 01:25:44,561
COVERAGE FOR THE TECHNOLOGIES 

1965
01:25:44,561 --> 01:25:45,395
THAT DO EXIST AND THEN FOR 

1966
01:25:45,395 --> 01:25:47,965
SURGERIES.

1967
01:25:47,965 --> 01:25:49,800
AND THE LACK OF PUBLIC EDUCATION

1968
01:25:49,800 --> 01:25:51,201
ON THESE DISEASES WHEREBY I 

1969
01:25:51,201 --> 01:25:53,971
GUESS THE MAJORITY OF PEOPLE IN 

1970
01:25:53,971 --> 01:25:55,339
THE UNITED STATES WITH 

1971
01:25:55,339 --> 01:25:57,207
LYMPHEDEMA HAVE NEVER HAD A 

1972
01:25:57,207 --> 01:25:59,209
PROPER DIAGNOSIS AND PATIENTS 

1973
01:25:59,209 --> 01:26:01,845
FINDING MEDICAL PRACTITIONERS 

1974
01:26:01,845 --> 01:26:03,513
WHICH IS WHY THERE'S STANDARDS 

1975
01:26:03,513 --> 01:26:06,483
OF EXCELLENCE IN 20 COUNTRIES.

1976
01:26:06,483 --> 01:26:07,317
WE HAVE 70 CENTERS OF EXCELLENCE

1977
01:26:07,317 --> 01:26:17,561
AT THIS POINT.

1978
01:26:19,730 --> 01:26:21,598
IT'S OVERSEEN BY OUR COMMITTEE.

1979
01:26:21,598 --> 01:26:22,499
THERE'S NOT BEEN NECESSARY 

1980
01:26:22,499 --> 01:26:25,669
IMPACTS ON THE TREATMENTS.

1981
01:26:25,669 --> 01:26:28,872
I TALKED TO PHARMA COMPANIES AND

1982
01:26:28,872 --> 01:26:31,008
WAITING FOR NIH TO CONDUCT THE 

1983
01:26:31,008 --> 01:26:33,210
RESEARCH BEFORE THEY MAKE 

1984
01:26:33,210 --> 01:26:40,183
INVESTMENT IN DEVELOPING DRUGS.

1985
01:26:40,183 --> 01:26:41,718
I BELIEVE NIH ESTIMATES THE 

1986
01:26:41,718 --> 01:26:43,820
FUNDING TO BE $14 MILLION THIS 

1987
01:26:43,820 --> 01:26:44,021
YEAR.

1988
01:26:44,021 --> 01:26:45,055
WHEREAS IN THE PAST THERE MIGHT 

1989
01:26:45,055 --> 01:26:49,860
HAVE BEEN A NEED FOR MORE 

1990
01:26:49,860 --> 01:26:50,160
RESEARCHERS.

1991
01:26:50,160 --> 01:26:51,161
WE HAVE INTERESTED RESEARCHERS 

1992
01:26:51,161 --> 01:26:53,263
TO JOIN THE FIELD AND NOW WE 

1993
01:26:53,263 --> 01:26:57,701
RISK LOSING THEM FOR LACK OF 

1994
01:26:57,701 --> 01:26:59,703
FUNDING AND WOULD BENEFIT NOW 

1995
01:26:59,703 --> 01:27:00,504
FROM MANHATTAN PROJECT APPROACH 

1996
01:27:00,504 --> 01:27:04,641
TO FINDING NEW TREATMENT AND 

1997
01:27:04,641 --> 01:27:06,576
CURES FOR LYMPHATIC DISEASES.

1998
01:27:06,576 --> 01:27:08,845
AS FAR AS THREE WISHES, NUMBER 

1999
01:27:08,845 --> 01:27:11,114
ONE HAS BEEN SATISFIED THE 

2000
01:27:11,114 --> 01:27:13,317
ESTABLISHMENT OF THE NATIONAL 

2001
01:27:13,317 --> 01:27:15,085
COMMISSION FOR WHICH LED THE 

2002
01:27:15,085 --> 01:27:15,319
CHARGE.

2003
01:27:15,319 --> 01:27:19,589
NUMBER TWO, A CENTER FOR 

2004
01:27:19,589 --> 01:27:21,191
LYMPHATIC DISEASES IS 

2005
01:27:21,191 --> 01:27:24,828
ESTABLISHED AT THE NATIONAL 

2006
01:27:24,828 --> 01:27:26,363
INSTITUTE OF HEALTH THAT AFFECT 

2007
01:27:26,363 --> 01:27:30,367
THE HOST OF DISEASES AND THIS 

2008
01:27:30,367 --> 01:27:34,371
CENTER BE HANDSOMELY FUNDED FOR 

2009
01:27:34,371 --> 01:27:43,480
TREATMENT AND CURES AT BREAKNECK

2010
01:27:43,480 --> 01:27:45,649
SPEED AND COLLABORATE WITH 

2011
01:27:45,649 --> 01:27:49,052
WOMEN'S LYMPHATIC HEALTH AND A 

2012
01:27:49,052 --> 01:27:51,822
PEER REVIEW PROGRAM INCLUDING 

2013
01:27:51,822 --> 01:27:52,990
LYMPHEDEMA AND LYMPHATIC 

2014
01:27:52,990 --> 01:27:54,825
DISEASES AS CATEGORIES ELIGIBLE 

2015
01:27:54,825 --> 01:27:57,094
FOR FUNDING WHICH WE FOUGHT HARD

2016
01:27:57,094 --> 01:27:57,260
FOR.

2017
01:27:57,260 --> 01:28:01,565
LAST YEAR THEY GAVE OUT $7 

2018
01:28:01,565 --> 01:28:02,399
BILLION IN LYMPHEDEMA AND 

2019
01:28:02,399 --> 01:28:04,434
LYMPHATIC DISEASE GRANTS AND 

2020
01:28:04,434 --> 01:28:06,570
COLLABORATING WITH THE CDC THAT 

2021
01:28:06,570 --> 01:28:13,276
FUNDS EDUCATIONAL CAMPAIGN AND 

2022
01:28:13,276 --> 01:28:14,745
WORK TOGETHER FOR MONUMENTAL 

2023
01:28:14,745 --> 01:28:15,545
GAINS.

2024
01:28:15,545 --> 01:28:16,780
LASTLY, A REMINDER OF THREE 

2025
01:28:16,780 --> 01:28:18,548
DOCUMENTS OF INTEREST YOU CAN 

2026
01:28:18,548 --> 01:28:20,751
DOWNLOAD FROM THE LEARN WEBSITE.

2027
01:28:20,751 --> 01:28:24,454
THE FIRST IS GAPS IN THE FIELD 

2028
01:28:24,454 --> 01:28:27,090
OF LYMPHATIC RESEARCH.

2029
01:28:27,090 --> 01:28:32,329
COMPLIED BY DOZENS OF 

2030
01:28:32,329 --> 01:28:32,929
RESEARCHERS FROM AROUND THE 

2031
01:28:32,929 --> 01:28:36,333
W0R8D  

2032
01:28:38,769 --> 01:28:40,370
AND THE GRANT WITH THE CDC 

2033
01:28:40,370 --> 01:28:42,539
AVAILABLE ON THE WEBSITE AS WELL

2034
01:28:42,539 --> 01:28:45,642
AND ALSO A DOCUMENT STANDARDIZED

2035
01:28:45,642 --> 01:28:48,712
APPROACH TO THE DIAGNOSIS AND 

2036
01:28:48,712 --> 01:28:50,313
MANAGEMENT OF LYMPHEDEMA AND 

2037
01:28:50,313 --> 01:28:50,747
LYMPHATIC DISEASES.

2038
01:28:50,747 --> 01:28:53,250
GO TO LYMPHATIC NETWORK.org ON 

2039
01:28:53,250 --> 01:28:56,153
THE HOME PAGE AND DOWNLOAD THE 

2040
01:28:56,153 --> 01:28:56,420
DOCUMENTS.

2041
01:28:56,420 --> 01:28:57,921
THANK YOU AND IT'S MY PLEASURE 

2042
01:28:57,921 --> 01:29:02,692
TO INTRODUCE VERONICA SENERIZ 

2043
01:29:02,692 --> 01:29:05,929
TELL YOU MORE ABOUT THE STORY OF

2044
01:29:05,929 --> 01:29:07,964
LIVING WITH LYMPHEDEMA AND 

2045
01:29:07,964 --> 01:29:10,767
STORIES OF COUNTLESS OTHER AS 

2046
01:29:10,767 --> 01:29:13,203
LEARNED PATIENT SERVICES 

2047
01:29:13,203 --> 01:29:13,470
DIRECTOR.

2048
01:29:13,470 --> 01:29:23,680
OVER TO YOU.

2049
01:29:32,689 --> 01:29:33,590
AUTO 

2050
01:29:33,590 --> 01:29:34,591
>> THANK YOU.

2051
01:29:34,591 --> 01:29:37,761
I WANT TO SHED LIGHT ON THE 

2052
01:29:37,761 --> 01:29:38,929
CHALLENGES PATIENTS LIKE ME 

2053
01:29:38,929 --> 01:29:39,262
FACE.

2054
01:29:39,262 --> 01:29:41,231
BEFORE I DIVE INTO THAT LET ME 

2055
01:29:41,231 --> 01:29:43,567
PROVIDE BACKGROUND AND CONTEXT.

2056
01:29:43,567 --> 01:29:48,672
LYMPHEDEMA HAS RAN LIKE A RIVER 

2057
01:29:48,672 --> 01:29:58,548
IN MY FAMILY SINCE 1905 AND I'M 

2058
01:29:58,548 --> 01:30:00,884
THIRD GENERATION AND HAVE TWO 

2059
01:30:00,884 --> 01:30:07,124
COUSINS WHO LIVE WITH IT ONE IN 

2060
01:30:07,124 --> 01:30:10,093
CALIFORNIA AND ONE IN TEXAS AND 

2061
01:30:10,093 --> 01:30:12,362
MY FATHER SUFFERED WITH 

2062
01:30:12,362 --> 01:30:15,866
CELLULITIS PASSED AWAY AT 2016.

2063
01:30:15,866 --> 01:30:20,337
SADLY, WE WERE DIAGNOSED BY A 

2064
01:30:20,337 --> 01:30:21,872
FREEWAY BILLBOARD IN 2008.

2065
01:30:21,872 --> 01:30:24,441
I STARTED A BLOG AND SOCIAL 

2066
01:30:24,441 --> 01:30:26,776
MEDIA PLATFORM TO CREATE A 

2067
01:30:26,776 --> 01:30:28,912
GLOBAL SPACE FOR PATIENT AND 

2068
01:30:28,912 --> 01:30:30,313
SUPPORT AND ADVOCACY 

2069
01:30:30,313 --> 01:30:31,114
INITIATIVES.

2070
01:30:31,114 --> 01:30:32,149
WHAT BEGAN AS A SMALL INITIATIVE

2071
01:30:32,149 --> 01:30:36,753
AND FRANKLY A HOBBY HAS NOW 

2072
01:30:36,753 --> 01:30:39,723
EXPANDED AND REACHED PATIENTS IN

2073
01:30:39,723 --> 01:30:41,191
180 COUNTRIES WORLDWIDE.

2074
01:30:41,191 --> 01:30:42,559
OVER THE YEARS I'VE HAD THE 

2075
01:30:42,559 --> 01:30:45,262
PRIVILEGE OF WORKING AND 

2076
01:30:45,262 --> 01:30:46,630
VOLUNTEERING WITH COUNTLESS 

2077
01:30:46,630 --> 01:30:49,966
PATIENT SUPPORT GROUPS, ADVOCACY

2078
01:30:49,966 --> 01:30:50,600
ORGANIZATIONS, NONPROFITS AND 

2079
01:30:50,600 --> 01:30:53,737
INDUSTRY PARTNERS.

2080
01:30:53,737 --> 01:30:54,905
AS A PATIENT ADVOCATE I'VE HAD 

2081
01:30:54,905 --> 01:30:57,541
THE HONOR OF SPEAKING WITH, 

2082
01:30:57,541 --> 01:30:58,942
LISTENING TO AND SUPPORTING 

2083
01:30:58,942 --> 01:31:01,278
THOUSANDS OF PATIENTS FROM ALL 

2084
01:31:01,278 --> 01:31:05,682
WALKS OF LIFE, BACKGROUNDS AND 

2085
01:31:05,682 --> 01:31:06,349
LEVELS OF DISEASE SEVERITY BOTH 

2086
01:31:06,349 --> 01:31:10,353
IN PERSON AND ONLINE.

2087
01:31:10,353 --> 01:31:12,756
THROUGH THE INTERACTIONS I'VE 

2088
01:31:12,756 --> 01:31:13,857
RECOGNIZED COMMON THREADS THAT 

2089
01:31:13,857 --> 01:31:17,194
UNITE PATIENTS REGARDLESS OF 

2090
01:31:17,194 --> 01:31:20,263
THEIR DIFFERENCES.

2091
01:31:20,263 --> 01:31:22,933
PRIMARILY LYMPHEDEMA TAKES A 

2092
01:31:22,933 --> 01:31:24,467
COMPREHENSIVE TOLL.

2093
01:31:24,467 --> 01:31:26,770
IT AFFECTS US PHYSICALLY, 

2094
01:31:26,770 --> 01:31:28,872
EMOTIONALLY AND MENTALLY AND 

2095
01:31:28,872 --> 01:31:31,041
IMPOSES SIGNIFICANT FINANCIAL 

2096
01:31:31,041 --> 01:31:31,474
BURDEN.

2097
01:31:31,474 --> 01:31:33,843
INSURANCE COVERAGE IS ABSOLUTELY

2098
01:31:33,843 --> 01:31:34,978
IMPERATIVE.

2099
01:31:34,978 --> 01:31:36,146
WE WANT TO BE SEEN AND HEARD.

2100
01:31:36,146 --> 01:31:40,717
NO LONGER SHALL WE BE FORCED TO 

2101
01:31:40,717 --> 01:31:45,055
SUFFER IN SILENCE AND ENDURE THE

2102
01:31:45,055 --> 01:31:46,690
DISFIGUREMENT WITHOUT 

2103
01:31:46,690 --> 01:31:46,990
RECOGNITION.

2104
01:31:46,990 --> 01:31:50,727
WE HAVE DAMAGED TOXIC AND 

2105
01:31:50,727 --> 01:31:52,696
SOMETIMES FIBROTIC TISSUE IN OUR

2106
01:31:52,696 --> 01:31:54,197
BODIES AND PEOPLE CONTINUE TO 

2107
01:31:54,197 --> 01:31:56,433
TELL US IT'S NO BIG DEAL.

2108
01:31:56,433 --> 01:31:57,867
FINDING QUALIFIED HEALTH CARE 

2109
01:31:57,867 --> 01:31:59,469
PROVIDERS IS A CHALLENGE.

2110
01:31:59,469 --> 01:32:04,674
MANY PATIENTS STRUGGLE TO LOCATE

2111
01:32:04,674 --> 01:32:13,483
PROVIDERS TO RECOGNIZE, DIAGNOSE

2112
01:32:13,483 --> 01:32:17,153
AFTER FIBROSIS OR REPEATED 

2113
01:32:17,153 --> 01:32:18,922
LIFE-THREATENING INFECTION.

2114
01:32:18,922 --> 01:32:19,756
AFFORDABLE AND ACCESSIBLE 

2115
01:32:19,756 --> 01:32:20,991
TREATMENT SOLUTION ESSENTIAL.

2116
01:32:20,991 --> 01:32:23,426
WE NEED OPTIONS WITHIN REACH FOR

2117
01:32:23,426 --> 01:32:26,563
EVERYONE AFFECTED BY THE 

2118
01:32:26,563 --> 01:32:26,796
DISEASE.

2119
01:32:26,796 --> 01:32:29,199
LYMPHEDEMA FLARE UPS CAN CAUSE A

2120
01:32:29,199 --> 01:32:32,335
WIDE RANGE OF SYMPTOMS AND 

2121
01:32:32,335 --> 01:32:33,036
AFFECT QUALITY OF LIFE INCLUDING

2122
01:32:33,036 --> 01:32:35,839
EXTREME FATIGUE, INCREASED 

2123
01:32:35,839 --> 01:32:37,007
SWELLING, INFLAMMATION, PAIN, 

2124
01:32:37,007 --> 01:32:41,478
SKIN TIGHTNESS, SENSITIVITY TO 

2125
01:32:41,478 --> 01:32:44,247
CHANGES IN BAROMETRIC PRESSURE 

2126
01:32:44,247 --> 01:32:45,248
AND CHALLENGES LIKE ANXIETY AND 

2127
01:32:45,248 --> 01:32:47,984
DEPRESSION.

2128
01:32:47,984 --> 01:32:49,953
SOME PATIENTS CONTEMPLATE 

2129
01:32:49,953 --> 01:32:53,123
SUICIDE OR AMPUTATION DUE TO THE

2130
01:32:53,123 --> 01:32:57,861
DECREASED QUALITY OF THEIR LIVES

2131
01:32:57,861 --> 01:33:01,197
COMPLICATIONS OFTEN GO 

2132
01:33:01,197 --> 01:33:02,832
UNADDRESSED.

2133
01:33:02,832 --> 01:33:07,804
MANY PATIENTS FACE ISSUES AND 

2134
01:33:07,804 --> 01:33:09,205
EVEN SUBSTANCE BUT FREQUENTLY 

2135
01:33:09,205 --> 01:33:11,708
RECEIVE LITTLE TO NO GUIDANCE 

2136
01:33:11,708 --> 01:33:13,576
HOW TO MANAGE THESE SERIOUS 

2137
01:33:13,576 --> 01:33:15,345
COMPLICATIONS.

2138
01:33:15,345 --> 01:33:17,347
TREATMENT DISPARITY PARTICULARLY

2139
01:33:17,347 --> 01:33:18,848
SEVERE FOR BED BOUND PATIENTS.

2140
01:33:18,848 --> 01:33:21,685
THE LACK OF INPATIENT TREATMENT 

2141
01:33:21,685 --> 01:33:23,119
CENTERS ACROSS THE COUNTRY 

2142
01:33:23,119 --> 01:33:28,558
LEAVES THESE INDIVIDUALS IN WITH

2143
01:33:28,558 --> 01:33:33,363
LIMITED CARE OPTIONS.

2144
01:33:33,363 --> 01:33:35,231
I'M BREAKING FROM MY NOTES TO 

2145
01:33:35,231 --> 01:33:36,066
PAUSE AND REFLECT.

2146
01:33:36,066 --> 01:33:38,301
I RECEIVED AN E-MAIL FROM 

2147
01:33:38,301 --> 01:33:41,004
SOMEONE I'VE BEEN WORKING WITH 

2148
01:33:41,004 --> 01:33:43,707
SINCE MARCH OF 2023 A CAREGIVER 

2149
01:33:43,707 --> 01:33:44,908
AND THEIR BROTHER DIED WITH 

2150
01:33:44,908 --> 01:33:50,580
LITTLE TO NO CARE IN THE NURSING

2151
01:33:50,580 --> 01:33:58,555
HOME.

2152
01:33:58,555 --> 01:34:09,099
LANG WANDS -- LANGUAGES AND MY 

2153
01:34:17,273 --> 01:34:21,978
STABLE WAS CONSIDERED TOO MILD 

2154
01:34:21,978 --> 01:34:26,783
AND WHEN MY LYMPHEDEMA 

2155
01:34:26,783 --> 01:34:29,052
PROGRESSED FOR SOMETHING AS 

2156
01:34:29,052 --> 01:34:31,755
SIMPLE AS STEPPING OFF A FLIGHT 

2157
01:34:31,755 --> 01:34:35,125
I WAS LATER SHUT DOWN FOR 

2158
01:34:35,125 --> 01:34:35,692
MEDICARE FRAUD.

2159
01:34:35,692 --> 01:34:37,193
I'VE EXPERIENCED WHAT IT'S LIKE 

2160
01:34:37,193 --> 01:34:39,262
TO HAVE ONLY ONE PAIR OF SHOES 

2161
01:34:39,262 --> 01:34:41,464
THAT FIT MY SWOLLEN FEET AND 

2162
01:34:41,464 --> 01:34:42,665
HAVE NO INSURANCE COVERAGE TO 

2163
01:34:42,665 --> 01:34:48,338
COVER CRITICAL TREATMENTS.

2164
01:34:48,338 --> 01:34:51,307
I'M DEEPLY GRATEFUL FOR THE 

2165
01:34:51,307 --> 01:34:58,515
CREATION OF THIS AND ALL OF YOU.

2166
01:34:58,515 --> 01:35:00,016
YOUR WORK IS CHANGING LIVES AS I

2167
01:35:00,016 --> 01:35:02,619
LOOK TO THE UNITED STATES FOR 

2168
01:35:02,619 --> 01:35:04,387
INSPIRATION AND HOPE FOR THE 

2169
01:35:04,387 --> 01:35:05,188
GROUP IN PARTICULAR.

2170
01:35:05,188 --> 01:35:10,994
ON BEHALF OF PATIENTS EVERYWHERE

2171
01:35:10,994 --> 01:35:11,795
WE THANK YOU FOR YOUR 

2172
01:35:11,795 --> 01:35:12,228
DEDICATION.

2173
01:35:12,228 --> 01:35:17,033
NEW AND HAVE A GREAT DAY.

2174
01:35:17,033 --> 01:35:19,569
>> THANK YOU BILL AND
VERONICA.

2175
01:35:19,569 --> 01:35:23,440
WE APPRECIATE IT.

2176
01:35:23,440 --> 01:35:26,476
WITH THAT WE'LL TURN TO 

2177
01:35:26,476 --> 01:35:30,213
CATHERINE SEO AND FOUNDER AND OF

2178
01:35:30,213 --> 01:35:35,552
AND LISA DUERRE OF LYMPHEDEMA 

2179
01:35:35,552 --> 01:35:36,853
SIMPLIFIED.

2180
01:35:36,853 --> 01:35:39,055
>> CAN YOU HEAR ME?

2181
01:35:39,055 --> 01:35:39,489
>> YES.

2182
01:35:39,489 --> 01:35:40,824
>> HI, EVERYONE.

2183
01:35:40,824 --> 01:35:43,526
WOW, IT'S BEEN AMAZING.

2184
01:35:43,526 --> 01:35:47,163
I'M CATHERINE SEO AND FOUNDER 

2185
01:35:47,163 --> 01:35:52,902
AND CEO OF LYMPHEDEMA SIMPLIFIED

2186
01:35:52,902 --> 01:35:53,903
AND LYMPHEDEMA PROJECT AND HERE 

2187
01:35:53,903 --> 01:35:56,506
WITH MY FRIEND AND COLLEAGUE, 

2188
01:35:56,506 --> 01:35:58,708
LISA DUERRE.

2189
01:35:58,708 --> 01:36:01,845
>> I'M THE MANAGING
DIRECTOR AND

2190
01:36:01,845 --> 01:36:03,613
ALSO A PATIENT.

2191
01:36:03,613 --> 01:36:09,853
>> AND IF YOU COULD CLICK 

2192
01:36:09,853 --> 01:36:13,623
THROUGH.

2193
01:36:13,623 --> 01:36:15,492
THESE ARE OUR LYMPHEDEMA AND 

2194
01:36:15,492 --> 01:36:17,193
OBESITY AND LYMPHATIC 

2195
01:36:17,193 --> 01:36:21,297
DYSFUNCTION IS MY CALLING CARD.

2196
01:36:21,297 --> 01:36:25,201
>> AT 53 I WAS DIAGNOSED
WITH 

2197
01:36:25,201 --> 01:36:26,736
LYMPHEDEMA AFTER DECADES OF 

2198
01:36:26,736 --> 01:36:30,139
LIVING WITH IT THROUGH PUBERTY 

2199
01:36:30,139 --> 01:36:31,040
AND LIVING WITH LYMPHEDEMA AND 

2200
01:36:31,040 --> 01:36:35,111
OBESITY AND THE COMORBIDITIES OF

2201
01:36:35,111 --> 01:36:36,513
ADHD HAVE SHOWN UP AND DIAGNOSED

2202
01:36:36,513 --> 01:36:39,716
IN MY WORLD AS WELL.

2203
01:36:39,716 --> 01:36:48,758
>> I AM A 75-YEAR-OLD AND
I D

2204
01:36:48,758 --> 01:36:51,227
DID -- I WAS LOOKING FOR A 

2205
01:36:51,227 --> 01:36:53,196
SOLUTION ON THE INABILITY FOR ME

2206
01:36:53,196 --> 01:36:54,664
TO GET A DIAGNOSIS.

2207
01:36:54,664 --> 01:36:59,269
SO THE LYMPHEDEMA PROJECT IS A 

2208
01:36:59,269 --> 01:36:59,969
5013C NONPROFIT.

2209
01:36:59,969 --> 01:37:02,005
WE'RE DEVOTED TO INCREASING 

2210
01:37:02,005 --> 01:37:02,939
AWARENESS AND PROVIDING 

2211
01:37:02,939 --> 01:37:08,745
EDUCATION RESEARCH AND TREATMENT

2212
01:37:08,745 --> 01:37:09,245
OPTIONS FOR LYMPHEDEMA.

2213
01:37:09,245 --> 01:37:19,622
WE AND RAN ACROSS AN 

2214
01:37:25,128 --> 01:37:26,029
ORGANIZATION IN NEW YORK.

2215
01:37:26,029 --> 01:37:27,864
>> AND AS YOU HEARD AND
INSPIRED

2216
01:37:27,864 --> 01:37:33,603
FOR ALL THIS AND GRATEFUL TO BE 

2217
01:37:33,603 --> 01:37:37,173
HERE, TODAY, LYMPHEDEMA IS A 

2218
01:37:37,173 --> 01:37:38,207
FOR-PROFIT MEMBERSHIP 

2219
01:37:38,207 --> 01:37:38,875
ORGANIZATION PROVIDING PROGRAMS 

2220
01:37:38,875 --> 01:37:40,910
AND RESOURCES THAT FOSTER 

2221
01:37:40,910 --> 01:37:45,315
LEARNING, CONNECTION AND WOMEN 

2222
01:37:45,315 --> 01:37:46,049
LIVING WITH LYMPHEDEMA AND 

2223
01:37:46,049 --> 01:37:48,151
LYMPHEDEMA RELATED DISORDERS.

2224
01:37:48,151 --> 01:37:48,785
YOU'LL SEE A GRAPH.

2225
01:37:48,785 --> 01:37:50,954
THE HOLISTIC APPROACH IN WHICH 

2226
01:37:50,954 --> 01:37:53,156
EVERYTHING WE DO BRINGS FORWARD 

2227
01:37:53,156 --> 01:37:54,757
SO LIVING WITH LYMPHEDEMA WE 

2228
01:37:54,757 --> 01:37:55,592
CREATE SPACE FOR YOU TO 

2229
01:37:55,592 --> 01:37:56,759
UNDERSTAND ALL THE IMPACTS IN 

2230
01:37:56,759 --> 01:37:58,861
YOUR LIFE AND HOW TO SUPPORT 

2231
01:37:58,861 --> 01:38:00,129
YOURSELF AS YOU NAVIGATE THIS 

2232
01:38:00,129 --> 01:38:03,199
COMPLEX SITUATION.

2233
01:38:03,199 --> 01:38:08,071
>> AND GO AHEAD AND CLICK
-- AND

2234
01:38:08,071 --> 01:38:11,741
IF I COULD, I'D JUMP AND DOWN 

2235
01:38:11,741 --> 01:38:12,642
AND DANCE A JIG AND SCREAM AT 

2236
01:38:12,642 --> 01:38:15,545
THE TOP OF MY LUNGS, THANK YOU.

2237
01:38:15,545 --> 01:38:22,151
A YEAR AGO I WAS APPROACHED BY 

2238
01:38:22,151 --> 01:38:25,188
PUBLISHER IN LONDON TO WRITE A 

2239
01:38:25,188 --> 01:38:27,357
BOOK ON LYMPHEDEMA WITH DOCTOR 

2240
01:38:27,357 --> 01:38:29,192
STANLEY ROCKSON AS OUR CHIEF 

2241
01:38:29,192 --> 01:38:33,196
EDITOR, DR. KEITH AND MYSELF AND

2242
01:38:33,196 --> 01:38:35,064
WE HAVE 21 AUTHORS WORLDWIDE 

2243
01:38:35,064 --> 01:38:39,902
WORKING ON IT FOR ABOUT A YEAR 

2244
01:38:39,902 --> 01:38:41,804
AND IT IS GOING TO BE PUBLISHED.

2245
01:38:41,804 --> 01:38:46,342
IT'S ALREADY ON AMAZON.

2246
01:38:46,342 --> 01:38:51,881
YOU CAN PURCHASE A PRE-ORDER AND

2247
01:38:51,881 --> 01:38:54,817
IT HOPEFULLY WILL FILL THE GAP 

2248
01:38:54,817 --> 01:38:57,720
IN GIVING INFORMATION AND AT THE

2249
01:38:57,720 --> 01:39:01,190
LEVEL OF MEDICAL SCHOOL AND 

2250
01:39:01,190 --> 01:39:01,557
PRACTITIONERS.

2251
01:39:01,557 --> 01:39:12,101
SO, GO AHEAD AND CLICK THROUGH.

2252
01:39:15,171 --> 01:39:18,441
WHAT I WANT TO EMPHASIZE IS 

2253
01:39:18,441 --> 01:39:19,442
WE'RE A COMMUNITY-BASED 

2254
01:39:19,442 --> 01:39:19,776
ORGANIZATION.

2255
01:39:19,776 --> 01:39:23,980
AS I SAID, I NEVER INTENDED TO 

2256
01:39:23,980 --> 01:39:25,915
CREATE A BUSINESS BUT I DID 

2257
01:39:25,915 --> 01:39:27,884
INTEND TO FIND PEOPLE WHO WE CAN

2258
01:39:27,884 --> 01:39:29,052
SUPPORT ONE ANOTHER.

2259
01:39:29,052 --> 01:39:33,356
IN THE SLIDE WE HAVE AUSTRALIA, 

2260
01:39:33,356 --> 01:39:36,225
BOSTON, NORTH CAROLINA, NEW 

2261
01:39:36,225 --> 01:39:39,462
ZEALAND, CANADA AND CALIFORNIA.

2262
01:39:39,462 --> 01:39:40,463
WE HAVE WOMEN INVOLVED ALL OVER 

2263
01:39:40,463 --> 01:39:44,100
THE WORLD.

2264
01:39:44,100 --> 01:39:50,873
GO AHEAD AND CLICK THROUGH.

2265
01:39:50,873 --> 01:39:52,875
>> SO LYMPHEDEMA
SIMPLIFIED WAS 

2266
01:39:52,875 --> 01:39:54,911
FOUNDED IN 2013 AND WHAT'S GOING

2267
01:39:54,911 --> 01:39:56,345
TO POP UP ARE STATISTICS TO LET 

2268
01:39:56,345 --> 01:39:58,848
YOU SEE THE REACH AND IMPACT AND

2269
01:39:58,848 --> 01:40:00,349
IT'S AN HONOR TO BE PART OF THIS

2270
01:40:00,349 --> 01:40:01,784
ORGANIZATION AND TO RECEIVE 

2271
01:40:01,784 --> 01:40:03,252
LEARNING FROM AND WITH EACH 

2272
01:40:03,252 --> 01:40:03,453
OTHER.

2273
01:40:03,453 --> 01:40:06,522
I THINK ONE OF THE HIGHLIGHTS 

2274
01:40:06,522 --> 01:40:07,623
HERE IS THE DOCUMENTARY THAT 

2275
01:40:07,623 --> 01:40:11,160
CATHERINE WAS THE PRODUCER OF 

2276
01:40:11,160 --> 01:40:13,863
THE DISEASE THEY CALL FAT ALMOST

2277
01:40:13,863 --> 01:40:17,066
AT THE 5 MILLION VIEWERSHIP MARK

2278
01:40:17,066 --> 01:40:18,968
AND MANY OF US ONE THE BROCHURE 

2279
01:40:18,968 --> 01:40:19,869
MENTIONED EARLIER ARE TWO OF 

2280
01:40:19,869 --> 01:40:21,204
THIS MAIN RESOURCES IN THE EARLY

2281
01:40:21,204 --> 01:40:23,940
DAYS THAT WERE HELPING PEOPLE 

2282
01:40:23,940 --> 01:40:26,409
UNDERSTAND, LIKE WHAT, THIS IS A

2283
01:40:26,409 --> 01:40:26,609
THING?

2284
01:40:26,609 --> 01:40:28,277
LYMPHEDEMA I'M NOT JUST OBESE 

2285
01:40:28,277 --> 01:40:30,780
THERE'S MORE GOING ON HERE?

2286
01:40:30,780 --> 01:40:33,182
THE HIGHLIGHT IS THERE'S 106,000

2287
01:40:33,182 --> 01:40:36,352
PEOPLE THAT HAVE BEEN OUR 

2288
01:40:36,352 --> 01:40:38,020
VIRTUAL EVENTS AND THIS INCLUDES

2289
01:40:38,020 --> 01:40:39,789
PATIENTS AND THEIR CLINICIANS.

2290
01:40:39,789 --> 01:40:41,257
IT'S A COMMUNITY HAVEN'T THAT IS

2291
01:40:41,257 --> 01:40:47,230
FOCUSSED ON ALL ASPECT ISES OF 

2292
01:40:47,230 --> 01:40:57,740
TREATMENT AND CARE AND WE HAD 

2293
01:41:14,090 --> 01:41:16,192
191 RESPONSES IN 24 HOURS WE 

2294
01:41:16,192 --> 01:41:18,194
GAVE THEM A 24 HOUR DESIGN AND 

2295
01:41:18,194 --> 01:41:21,197
THIS IS WHAT THEY GAVE US VERY 

2296
01:41:21,197 --> 01:41:22,465
SIMILAR TO WHAT YOU HEARD.

2297
01:41:22,465 --> 01:41:25,201
THE LACK OF MEDICAL KNOWLEDGE 

2298
01:41:25,201 --> 01:41:28,771
AND INCREASE AND LACK OF 

2299
01:41:28,771 --> 01:41:37,180
MOBILITY AND PAIN AND DELAYED 

2300
01:41:37,180 --> 01:41:39,916
DIAGNOSIS.

2301
01:41:39,916 --> 01:41:44,353
>> FROM THE STANDPOINT OF
THE 

2302
01:41:44,353 --> 01:41:46,189
RESOURCE GAP AND HEARD AS WELL 

2303
01:41:46,189 --> 01:41:47,323
HERE IS THE INSURANCE COVERAGE 

2304
01:41:47,323 --> 01:41:48,991
ISSUES AND THE LIMITED 

2305
01:41:48,991 --> 01:41:49,292
RECOGNITION.

2306
01:41:49,292 --> 01:41:51,160
THE LACK OF ACCESS TO ALL THE 

2307
01:41:51,160 --> 01:41:52,695
THINGS YOU TALKED ABOUT.

2308
01:41:52,695 --> 01:41:54,964
THE LIMITED ACCESS TO 

2309
01:41:54,964 --> 01:41:57,166
SPECIALISTS WHICH IS VALIDATING 

2310
01:41:57,166 --> 01:41:59,235
WHAT OUR COMMUNITY IS TELLING US

2311
01:41:59,235 --> 01:42:00,636
THIS AND WE ARE HEARING THIS AND

2312
01:42:00,636 --> 01:42:01,804
THE FINANCIAL BURDEN IS 

2313
01:42:01,804 --> 01:42:03,773
DEFINITELY THERE AND THE HIGH 

2314
01:42:03,773 --> 01:42:05,775
COST DISCOURAGED PROACTIVE 

2315
01:42:05,775 --> 01:42:09,178
TREATMENT AND WORSENING 

2316
01:42:09,178 --> 01:42:12,148
CONDITIONS OVER TIME.

2317
01:42:12,148 --> 01:42:14,684
>> AND THE TOP THREE
WISHES, 

2318
01:42:14,684 --> 01:42:16,886
WHICH WE SORT OF LOOK AT AS 

2319
01:42:16,886 --> 01:42:18,321
BUILDING A BETTER FUTURE FOR 

2320
01:42:18,321 --> 01:42:25,194
THOSE OF US WITH LYMPHATIC 

2321
01:42:25,194 --> 01:42:35,371
DISORDERS.

2322
01:42:53,890 --> 01:42:55,191
AND THERE'S CENTERS OF 

2323
01:42:55,191 --> 01:42:56,325
EXCELLENCE ALL OVER THE WORLD.

2324
01:42:56,325 --> 01:43:01,197
I REFER PATIENTS TO IT ALL THE 

2325
01:43:01,197 --> 01:43:02,365
TIME.

2326
01:43:02,365 --> 01:43:06,535
AND THE HOLISTIC CARE TEAM.

2327
01:43:06,535 --> 01:43:09,005
I AM THRILLED TO BE PART OF THIS

2328
01:43:09,005 --> 01:43:09,338
CONVERSATION.

2329
01:43:09,338 --> 01:43:13,175
I THINK I USED THRILLED AT LEAST

2330
01:43:13,175 --> 01:43:13,476
FOUR TIMES.

2331
01:43:13,476 --> 01:43:15,177
BUT WHAT WE HAVE TO SHARE WITH 

2332
01:43:15,177 --> 01:43:19,215
YOU, I BELIEVE, IS MUCH MORE 

2333
01:43:19,215 --> 01:43:23,819
ABOUT OUR PERSONAL STORIES.

2334
01:43:23,819 --> 01:43:28,624
AND LIE  -- LISA CAME UP AND 

2335
01:43:28,624 --> 01:43:33,195
TURNED AROUND AND SAYING HOW CAN

2336
01:43:33,195 --> 01:43:34,397
I HELP EVERYONE ELSE.

2337
01:43:34,397 --> 01:43:37,833
AND HER LEADERSHIP AS A 

2338
01:43:37,833 --> 01:43:38,634
DEVELOPMENT PROFESSIONAL IN HIGH

2339
01:43:38,634 --> 01:43:43,139
TECH HAS BROUGHT TO US SO MUCH.

2340
01:43:43,139 --> 01:43:44,540
SO, I WOULD LIKE TO SAY NEXT 

2341
01:43:44,540 --> 01:43:47,810
SLIDE AND WILL TAKE A MINUTE AND

2342
01:43:47,810 --> 01:43:49,178
SHARE AND IT'S NOT PARTICULARLY 

2343
01:43:49,178 --> 01:43:52,348
ON THE AGENDA BUT NEEDS TO BE 

2344
01:43:52,348 --> 01:43:59,055
SPOKEN WHICH IS CENTRAL 

2345
01:43:59,055 --> 01:44:09,432
LYMPHATIC DYSFUNCTION.

2346
01:44:32,788 --> 01:44:34,957
AND IT'S NOT UNCOMMON TO WALK 

2347
01:44:34,957 --> 01:44:36,492
OFF A PLANE AND SAY SOMETHING'S 

2348
01:44:36,492 --> 01:44:36,826
DIFFERENT.

2349
01:44:36,826 --> 01:44:38,894
THIS IS WAY MORE THAN THAT.

2350
01:44:38,894 --> 01:44:40,062
WHAT HAPPENED I WENT TO A 

2351
01:44:40,062 --> 01:44:42,965
CONFERENCE ON THE WAY BACK FROM 

2352
01:44:42,965 --> 01:44:45,668
THE CONFERENCE MY BODY LITERALLY

2353
01:44:45,668 --> 01:44:47,336
BLEW UP.

2354
01:44:47,336 --> 01:44:51,907
MY FACE DOUBLED IN SIZE AND 

2355
01:44:51,907 --> 01:44:56,545
COULDN'T BREATHE.

2356
01:44:56,545 --> 01:44:58,414
SOME SYMPTOMS I HAD WERE SUCH 

2357
01:44:58,414 --> 01:45:02,351
WHEN I GOT OFF THE PLANE I WAS 

2358
01:45:02,351 --> 01:45:08,958
TAKEN TO THE EMERGENCY ROOM AND 

2359
01:45:08,958 --> 01:45:19,502
COULDN'T BREATHE AND I WOULD SAY

2360
01:45:44,994 --> 01:45:48,597
THERE'S SOMETHING GOING ON WITH 

2361
01:45:48,597 --> 01:45:50,466
MY LYMPHATIC SYSTEM AND SEND ME 

2362
01:45:50,466 --> 01:45:52,535
FOR ANOTHER RULE OUT.

2363
01:45:52,535 --> 01:45:53,636
EVERYTHING.

2364
01:45:53,636 --> 01:45:56,972
130 TESTS LATER, THANK GOD I 

2365
01:45:56,972 --> 01:46:00,076
FOUND DR. MAX ITKIN AND I HAVE 

2366
01:46:00,076 --> 01:46:01,210
TO SAY I'M HERE AND STILL 

2367
01:46:01,210 --> 01:46:03,045
KICKING AND PROBABLY GOING TO 

2368
01:46:03,045 --> 01:46:13,422
SEE MY 76th BIRTHDAY.

2369
01:46:20,563 --> 01:46:21,497
JUST HAVING A LYMPHATIC DISORDER

2370
01:46:21,497 --> 01:46:22,064
IS BEING IN THE MIDST OF A 

2371
01:46:22,064 --> 01:46:30,873
FIGHT.

2372
01:46:30,873 --> 01:46:33,409
I'M SO HAPPY TO SHARE LISA WITH 

2373
01:46:33,409 --> 01:46:33,576
YOU.

2374
01:46:33,576 --> 01:46:36,545
>> IT'S LIKE WALKING
THROUGH THE

2375
01:46:36,545 --> 01:46:38,280
FIRE AND I'M INSPIRED BY WHAT'S 

2376
01:46:38,280 --> 01:46:41,250
BEEN SAID AND THOUGHT I'D TAKE A

2377
01:46:41,250 --> 01:46:42,151
BRIEF MOMENT.

2378
01:46:42,151 --> 01:46:45,020
WHAT I FIRST FIGURED OUT ABOUT 

2379
01:46:45,020 --> 01:46:46,155
LYMPHEDEMA I'VE SEEN PICTURES OF

2380
01:46:46,155 --> 01:46:47,957
ARMS AND LEGS AND WHAT WAS 

2381
01:46:47,957 --> 01:46:49,191
MISSING FOR ME WAS THE PATIENT 

2382
01:46:49,191 --> 01:46:49,525
EXPERIENCE.

2383
01:46:49,525 --> 01:46:55,598
I'M GOING TO SHARE WITH YOU MY 

2384
01:46:55,598 --> 01:47:05,808
QUICK JOURNEY.

2385
01:47:05,808 --> 01:47:08,344
BASICALLY I WAS NOT ABLE TO WALK

2386
01:47:08,344 --> 01:47:12,481
AND AT 53 I WAS RIDING THIS 

2387
01:47:12,481 --> 01:47:15,117
SCOOTER HELPING MY DAUGHTER BACK

2388
01:47:15,117 --> 01:47:16,986
IT SCHOOL SHOP TO BE PRESENT AND

2389
01:47:16,986 --> 01:47:21,090
YOU DON'T SEE THE LIFE TIME OF 

2390
01:47:21,090 --> 01:47:23,092
NOT UNDERSTANDING THE 

2391
01:47:23,092 --> 01:47:27,062
DISFIGUREMENT AND IN ONE YEAR I 

2392
01:47:27,062 --> 01:47:28,197
GAINED OVER 100 POUNDS AND 

2393
01:47:28,197 --> 01:47:28,797
COULDN'T FIGURE OUT WHAT WAS 

2394
01:47:28,797 --> 01:47:33,903
WRONG.

2395
01:47:33,903 --> 01:47:36,138
IT TOOK ME SIX YEARS TO BECOME 

2396
01:47:36,138 --> 01:47:37,573
PREGNANT AND HAVE A HEALTHY 

2397
01:47:37,573 --> 01:47:39,308
DELIVERY OF MY DAUGHTER AND WENT

2398
01:47:39,308 --> 01:47:42,978
THROUGH IVF AND I STARTED 

2399
01:47:42,978 --> 01:47:47,383
SWELLING UNCONTROLLABLY IN THE 

2400
01:47:47,383 --> 01:47:51,554
DELIVERY ROOM AND THAT'S WHEN I 

2401
01:47:51,554 --> 01:47:55,424
STARTED SEEING THE FLARES AND 

2402
01:47:55,424 --> 01:47:56,559
EXACERBATION A DIAGNOSIS.

2403
01:47:56,559 --> 01:47:59,895
I DID TAKE CARE OF MY HEALTH I 

2404
01:47:59,895 --> 01:48:00,129
THOUGHT.

2405
01:48:00,129 --> 01:48:01,997
I THOUGHT I TOOK CARE OF MY 

2406
01:48:01,997 --> 01:48:05,201
WEIGHT AFTER I GAVE BIRTH I WENT

2407
01:48:05,201 --> 01:48:10,206
THROUGH AN 82 WEEK MEDICALLY 

2408
01:48:10,206 --> 01:48:11,874
SUPERVISED PROGRAM AND THOUGHT 

2409
01:48:11,874 --> 01:48:13,309
EVERYTHING'S FINE I LOOK MORE 

2410
01:48:13,309 --> 01:48:13,676
NORMAL.

2411
01:48:13,676 --> 01:48:16,445
AND I WAS WILLING TO TAKE A 

2412
01:48:16,445 --> 01:48:22,585
PHOTO IN A BATHING SUIT AND A 

2413
01:48:22,585 --> 01:48:24,286
PHOTO OF ME AND TOOK THE PICTURE

2414
01:48:24,286 --> 01:48:26,188
TO SHOW MY DAUGHTER WHAT IT WAS 

2415
01:48:26,188 --> 01:48:30,125
LIKE TO HAVE BODY POSITIVITY.

2416
01:48:30,125 --> 01:48:32,962
AND ANOTHER PICTURE OF ME NOW 

2417
01:48:32,962 --> 01:48:34,129
AND WHAT HAPPENED IS THE REASON 

2418
01:48:34,129 --> 01:48:37,566
THIS IS COMPELLING FOR ME 

2419
01:48:37,566 --> 01:48:38,867
VISUALLY IS YOU'LL SEE 

2420
01:48:38,867 --> 01:48:40,102
LYMPHEDEMA NEVER DIAGNOSED OR 

2421
01:48:40,102 --> 01:48:43,272
CAUGHT BY THE MEDICAL SYSTEM AND

2422
01:48:43,272 --> 01:48:45,074
SEE THE LYMPHEDEMA AND OBESITY 

2423
01:48:45,074 --> 01:48:47,176
THROUGH MENOPAUSE ON THE OTHER 

2424
01:48:47,176 --> 01:48:48,978
SIDE OF THE PHOTO.

2425
01:48:48,978 --> 01:48:51,914
IT'S BACKWARDS BEFORE AND AFTER 

2426
01:48:51,914 --> 01:48:52,848
PHOTO.

2427
01:48:52,848 --> 01:48:56,452
I'LL LEAVE YOU WITH THIS, 

2428
01:48:56,452 --> 01:48:58,087
LYMPHEDEMA CARE IS A FULL TIME 

2429
01:48:58,087 --> 01:49:00,356
JOB AND I'M A BUSINESS OWNER AND

2430
01:49:00,356 --> 01:49:02,157
ADVOCATE AND FROM AN INSURANCE 

2431
01:49:02,157 --> 01:49:04,226
STANDPOINT I DO A LOT OF MY OWN 

2432
01:49:04,226 --> 01:49:06,161
CARE MUCH TO WHAT YOU HEAR HERE.

2433
01:49:06,161 --> 01:49:09,932
I GET IN THE POOL REGULARLY AND 

2434
01:49:09,932 --> 01:49:11,600
USE A LYMPHATIC PUMP AND DRAINS 

2435
01:49:11,600 --> 01:49:13,636
ME PHYSICALLY IT'S DRAINING 

2436
01:49:13,636 --> 01:49:15,904
EMOTIONALLY AND HARD ON MY 

2437
01:49:15,904 --> 01:49:20,976
FAMILY AND I'M SO GRATEFUL FOR 

2438
01:49:20,976 --> 01:49:23,345
THIS COMMISSION BECAUSE WHAT WE 

2439
01:49:23,345 --> 01:49:26,448
CAN DO IS MAKE A DIFFERENCE IN 

2440
01:49:26,448 --> 01:49:27,383
OUR LIVES.

2441
01:49:27,383 --> 01:49:32,821
I'M GRATEFUL FOR THE TIME.

2442
01:49:32,821 --> 01:49:34,189
>> THANK YOU FOR ANOTHER 

2443
01:49:34,189 --> 01:49:35,491
POWERFUL PRESENTATION.

2444
01:49:35,491 --> 01:49:38,093
THE NEXT PRESENTER JENNIFER 

2445
01:49:38,093 --> 01:49:39,895
WILLIAMS.

2446
01:49:39,895 --> 01:49:44,566
SHE'S THE DIRECTOR AND CLINICAL 

2447
01:49:44,566 --> 01:49:49,972
EDUCATION OF NATIONAL LYMPHEDEMA

2448
01:49:49,972 --> 01:49:53,375
NETWORK AND CINDY WESSELS.

2449
01:49:53,375 --> 01:50:03,886
>> THANK YOU FOR INVITING
THE 

2450
01:50:05,954 --> 01:50:08,557
NLM FOR HERE AND I'M A PHYSICAL 

2451
01:50:08,557 --> 01:50:09,224
THEREAFTER EVERYONE.

2452
01:50:09,224 --> 01:50:17,866
THE NLN PROVIDERS EDUCATION AND 

2453
01:50:17,866 --> 01:50:22,971
GUIDANCE REGARDING LYMPHEDEMA 

2454
01:50:22,971 --> 01:50:26,475
MANAGEMENT BY DELIVERING 

2455
01:50:26,475 --> 01:50:27,476
EDUCATION AND THE FIRST 

2456
01:50:27,476 --> 01:50:29,878
ASSOCIATION IN THE 

2457
01:50:29,878 --> 01:50:31,814
U.S. DEDICATED TO LYMPHEDEMA 

2458
01:50:31,814 --> 01:50:33,916
AWARENESS.

2459
01:50:33,916 --> 01:50:35,718
OUR CONSTITUENTS FACE MANY 

2460
01:50:35,718 --> 01:50:38,153
SIGNIFICANT CHALLENGES.

2461
01:50:38,153 --> 01:50:42,591
JUST TO GO OVER CHALLENGE ONE IS

2462
01:50:42,591 --> 01:50:44,827
THE LIMITED NUMBER OF PRACTICING

2463
01:50:44,827 --> 01:50:45,794
THERAPISTS AFFECTING WHERE 

2464
01:50:45,794 --> 01:50:46,929
PATIENTS CAN FIND TREATMENT AND 

2465
01:50:46,929 --> 01:50:49,198
THE NUMBER OF VISITS PER WEEK 

2466
01:50:49,198 --> 01:50:51,734
THE PHYSICIANS ARE ALLOWED TO 

2467
01:50:51,734 --> 01:50:54,336
VISIT THE ORGANIZATION PER 

2468
01:50:54,336 --> 01:50:56,939
PATIENT TOOLS WHICH CAN AFFECT 

2469
01:50:56,939 --> 01:50:59,942
THE DELIVERY OF CDT AND LACK OF 

2470
01:50:59,942 --> 01:51:02,578
KNOWLEDGE BY PHYSICIANS TO 

2471
01:51:02,578 --> 01:51:04,413
DIAGNOSE AND REFER TREATMENT.

2472
01:51:04,413 --> 01:51:06,648
PATIENCE WAIT MONTHS TO YEARS TO

2473
01:51:06,648 --> 01:51:09,151
RECEIVE A PROPER DIAGNOSIS AND 

2474
01:51:09,151 --> 01:51:11,019
EVEN THEN NOT REFERRED IN A 

2475
01:51:11,019 --> 01:51:12,654
TIMELY MANNER.

2476
01:51:12,654 --> 01:51:13,989
NEXT CHALLENGE IS HIGH INSURANCE

2477
01:51:13,989 --> 01:51:18,327
CO-PAYS AND DEDUCTIBLES THAT 

2478
01:51:18,327 --> 01:51:22,231
LIMIT THERAPY OF CDT AND 

2479
01:51:22,231 --> 01:51:23,432
COMPRESSION GARMENTS AND 

2480
01:51:23,432 --> 01:51:24,800
MAINTENANCE FEES.

2481
01:51:24,800 --> 01:51:27,236
PATIENTS ARE STRUGGLING WITH 

2482
01:51:27,236 --> 01:51:28,270
AFFORDING THE 20% MEDICARE DOES 

2483
01:51:28,270 --> 01:51:30,239
NOT COVER AND DON'T HAVE A 

2484
01:51:30,239 --> 01:51:31,440
SECONDARY INSURANCE.

2485
01:51:31,440 --> 01:51:33,909
SOME PRIVATE INSURANCES STILL DO

2486
01:51:33,909 --> 01:51:34,877
NOT COVER APPROPRIATE 

2487
01:51:34,877 --> 01:51:36,412
COMPRESSION GARMENTS AT ALL.

2488
01:51:36,412 --> 01:51:38,514
NEXT CHALLENGE, INSURANCE 

2489
01:51:38,514 --> 01:51:41,617
LIMITATIONS ON THE TOTAL VISITS 

2490
01:51:41,617 --> 01:51:48,390
AND LENGTH OF VISIT AND 

2491
01:51:48,390 --> 01:51:48,657
TREATMENT.

2492
01:51:48,657 --> 01:51:51,827
MOST THERAPISTS ARE ALLOWED ONLY

2493
01:51:51,827 --> 01:51:53,295
60 MINUTES WITH EACH PATIENT 

2494
01:51:53,295 --> 01:51:55,531
THOUGH SOME LIMIT THIS TIME 

2495
01:51:55,531 --> 01:51:57,099
FURTHER DUE TO PRODUCTIVITY 

2496
01:51:57,099 --> 01:51:57,399
REGULATIONS.

2497
01:51:57,399 --> 01:52:00,102
IF A PATIENT DEMONSTRATES 

2498
01:52:00,102 --> 01:52:02,905
ADDITIONAL COMPLEXITIES SUCH AS 

2499
01:52:02,905 --> 01:52:04,907
COMORBIDITIES, WOUNDS THE 60 

2500
01:52:04,907 --> 01:52:06,909
MINUTES MAY NOT BE SUFFICIENT TO

2501
01:52:06,909 --> 01:52:09,845
PERFORM THAT CDT TO THE HIGHEST 

2502
01:52:09,845 --> 01:52:10,112
STANDARDS.

2503
01:52:10,112 --> 01:52:13,182
AND LACK OF REIMBURSEMENT FOR 

2504
01:52:13,182 --> 01:52:16,685
GARMENT FITTING POSES A 

2505
01:52:16,685 --> 01:52:16,952
CHALLENGE.

2506
01:52:16,952 --> 01:52:19,188
NEXT CHALLENGE IS POOR INSURANCE

2507
01:52:19,188 --> 01:52:21,223
REIMBURSEMENT RATES.

2508
01:52:21,223 --> 01:52:22,524
MANY MEMBERS REPORT DIFFICULTY 

2509
01:52:22,524 --> 01:52:25,060
FOR THE PRACTITIONER TO HIGHER 

2510
01:52:25,060 --> 01:52:32,601
EMPLOYEES TO REMAIN COMPETITIVE 

2511
01:52:32,601 --> 01:52:34,436
WITH HOSPITAL-BASED 

2512
01:52:34,436 --> 01:52:37,639
ORGANIZATIONS AND THEY HAVE 

2513
01:52:37,639 --> 01:52:39,441
DECREASED THE STANDARDS 

2514
01:52:39,441 --> 01:52:40,542
COMPARABLE TO THOSE OF THEIR 

2515
01:52:40,542 --> 01:52:45,914
ORTHOPEDIC COUNTERPARTS AND MANY

2516
01:52:45,914 --> 01:52:50,552
THERAPISTS DISCONTINUED OFFERING

2517
01:52:50,552 --> 01:52:53,188
LYMPHATIC TREATMENT DUE TO THE 

2518
01:52:53,188 --> 01:52:55,057
THERAPIST BURN OUT.

2519
01:52:55,057 --> 01:52:57,793
SOME MAJOR RESOURCE CHALLENGES.

2520
01:52:57,793 --> 01:53:03,732
KNOWLEDGEABLE HEALTH CARE 

2521
01:53:03,732 --> 01:53:04,366
PROFESSIONALS AND A SIGNIFICANT 

2522
01:53:04,366 --> 01:53:08,637
NUMBER OF TREATMENT DESERTS.

2523
01:53:08,637 --> 01:53:13,876
WE RECEIVED REQUESTS TO 

2524
01:53:13,876 --> 01:53:15,177
DIAGNOSIS AND TREAT.

2525
01:53:15,177 --> 01:53:18,013
AND SECOND IS PRIVATE INSURANCE 

2526
01:53:18,013 --> 01:53:19,715
AND FINANCIAL BURDEN.

2527
01:53:19,715 --> 01:53:22,518
CO-PAYS AND DEDUCTIBLES AND 

2528
01:53:22,518 --> 01:53:24,520
BANDAGES AND ACCESSORIES AND 

2529
01:53:24,520 --> 01:53:26,955
EVEN TREATMENT VISITS CAN CREATE

2530
01:53:26,955 --> 01:53:27,789
A CHALLENGE FOR THE MAJORITY OF 

2531
01:53:27,789 --> 01:53:29,324
THE PATIENTS.

2532
01:53:29,324 --> 01:53:34,263
ACCESS TO CARE RESTRICTED BY 

2533
01:53:34,263 --> 01:53:36,899
TRANSPORTATION AND HOME AGENCIES

2534
01:53:36,899 --> 01:53:37,966
OFFERING TREATMENT.

2535
01:53:37,966 --> 01:53:41,169
DEW TO LIMIT OF FINANCIAL 

2536
01:53:41,169 --> 01:53:43,772
RESOURCES AND NOT EVERY AGENCY 

2537
01:53:43,772 --> 01:53:47,976
HAS A CERTIFIED THERAPIST ON 

2538
01:53:47,976 --> 01:53:50,812
STAFF TO PERFORM HIGH QUALITY 

2539
01:53:50,812 --> 01:53:50,979
CDT.

2540
01:53:50,979 --> 01:53:51,914
PHYSICAL SYSTEMS AT HOME DURING 

2541
01:53:51,914 --> 01:53:54,316
THE ACTIVE AND MAINTENANCE 

2542
01:53:54,316 --> 01:53:54,950
PHASES OF TREATMENT.

2543
01:53:54,950 --> 01:53:57,419
MANY PEOPLE DO NOT HAVE FAMILY 

2544
01:53:57,419 --> 01:54:00,322
OR IN HOME CARE TO APPLY BAND 

2545
01:54:00,322 --> 01:54:03,125
ANDS AND/OR COMPRESSION GARMENTS

2546
01:54:03,125 --> 01:54:04,593
AND MAY DEMONSTRATE LIMITED 

2547
01:54:04,593 --> 01:54:05,827
FLEXIBILITY TO DO SO 

2548
01:54:05,827 --> 01:54:06,161
INDEPENDENTLY.

2549
01:54:06,161 --> 01:54:10,532
THIS LEADS TO ALTERNATIVE 

2550
01:54:10,532 --> 01:54:15,003
COMPRESSION GARMENTS AND FINALLY

2551
01:54:15,003 --> 01:54:16,939
THE LIMITED RESEARCH TO SUPPORT 

2552
01:54:16,939 --> 01:54:18,273
EVIDENCE-BASED PRACTICE THROUGH 

2553
01:54:18,273 --> 01:54:21,610
MRAUNL THERAPIES, JEANING AND 

2554
01:54:21,610 --> 01:54:22,277
TREATMENT TOOLS, MODALITIES AND 

2555
01:54:22,277 --> 01:54:24,980
OTHER ADVANCED INTERVENTIONS.

2556
01:54:24,980 --> 01:54:25,647
THIS AFFECTS INSURANCE COVERAGE 

2557
01:54:25,647 --> 01:54:27,049
AND REIMBURSEMENT AND ACCESS TO 

2558
01:54:27,049 --> 01:54:33,055
THE TOOLS AND MODALITIIES AS MAY

2559
01:54:33,055 --> 01:54:33,622
ORGANIZATIONS REQUIRE THE 

2560
01:54:33,622 --> 01:54:34,957
PURCHASE OF SUCH ITEMS TO BE 

2561
01:54:34,957 --> 01:54:37,726
SUPPORTED BY RESEARCH.

2562
01:54:37,726 --> 01:54:39,728
AND OUR THREE WISHES.

2563
01:54:39,728 --> 01:54:43,065
IN THE FUTURE WE HOPE ALL HEALTH

2564
01:54:43,065 --> 01:54:44,433
CARE PROVIDERS NEW AND 

2565
01:54:44,433 --> 01:54:46,602
REGARDLESS OF SETTING HAVE AT 

2566
01:54:46,602 --> 01:54:47,636
LEAST THE BASIC KNOWLEDGE OF 

2567
01:54:47,636 --> 01:54:49,538
LYMPHATIC SYSTEM AND ASSOCIATED 

2568
01:54:49,538 --> 01:54:52,341
DISEASES ENOUGH TO MAKE A PROPER

2569
01:54:52,341 --> 01:54:53,308
DIAGNOSIS AND TIMELY REFERRAL TO

2570
01:54:53,308 --> 01:54:54,176
THE TREATMENT.

2571
01:54:54,176 --> 01:54:56,411
WE HOPE THE GENERAL PUBLIC HAS A

2572
01:54:56,411 --> 01:54:59,615
BASIC KNOWLEDGE OF THE MOST 

2573
01:54:59,615 --> 01:55:01,183
COMMON LYMPHATIC DISEASES.

2574
01:55:01,183 --> 01:55:04,019
WE HOPE ALL PEOPLE LIVING WITH 

2575
01:55:04,019 --> 01:55:06,221
LYMPHATIC DISEASE RECEIVE TIMELY

2576
01:55:06,221 --> 01:55:07,122
DIAGNOSIS AND RECEIVE CARE 

2577
01:55:07,122 --> 01:55:09,191
WITHOUT BARRIERS WITH A 

2578
01:55:09,191 --> 01:55:19,735
THERAPIST, PHYSICIAN OR SURGEON.

2579
01:55:22,971 --> 01:55:25,273
THANK YOU SO MUCH FOR ALLOWING 

2580
01:55:25,273 --> 01:55:29,144
US TO BE HERE TODAY I'D LIKE TO 

2581
01:55:29,144 --> 01:55:32,881
INTRODUCE OUR PATIENT 

2582
01:55:32,881 --> 01:55:36,918
REPRESENTATIVE, CINDY WES JELS.

2583
01:55:36,918 --> 01:55:36,985
 

2584
01:55:42,691 --> 01:55:42,891
WESSELLS.

2585
01:55:42,891 --> 01:55:45,027
>> CAN YOU HEAR ME, I
HOPE?

2586
01:55:45,027 --> 01:55:45,727
>> YES.

2587
01:55:45,727 --> 01:55:47,929
>> SORRY ABOUT THAT.

2588
01:55:47,929 --> 01:55:57,172
I'D LIKE TO -- THIS HAS BEEN AN 

2589
01:55:57,172 --> 01:55:59,608
AMAZING COALITION ON THE ISSUE 

2590
01:55:59,608 --> 01:56:01,176
EVERYONE IS FACING FROM THE 

2591
01:56:01,176 --> 01:56:02,544
PATIENT PERSPECTIVE AND THE 

2592
01:56:02,544 --> 01:56:05,881
INCREDIBLE WORK EVERYONE IS 

2593
01:56:05,881 --> 01:56:09,151
DOING TO ADVANCE KNOWLEDGE OF 

2594
01:56:09,151 --> 01:56:11,019
AND TREATMENT OF LYMPHEDEMA.

2595
01:56:11,019 --> 01:56:17,192
I WAS DIAGNOSED WITH PRIMARY 

2596
01:56:17,192 --> 01:56:19,027
LYMPHEDEMA IN 1994.

2597
01:56:19,027 --> 01:56:20,962
THAT'S 26 YEARS AFTER MY BIRTH.

2598
01:56:20,962 --> 01:56:25,133
SO IT WAS A LONG ROAD OF NOT 

2599
01:56:25,133 --> 01:56:28,503
KNOWING WHAT I HAD, WHAT WAS 

2600
01:56:28,503 --> 01:56:29,104
WRONG WITH ME.

2601
01:56:29,104 --> 01:56:32,174
I DO HAVE A PICTURE I HOPE I CAN

2602
01:56:32,174 --> 01:56:33,175
GET ON THE SCREEN OKAY.

2603
01:56:33,175 --> 01:56:38,213
THIS WAS ME WHEN I WAS FIRST 

2604
01:56:38,213 --> 01:56:38,480
DIAGNOSED.

2605
01:56:38,480 --> 01:56:40,916
SO PRETTY SEVERE AND SIGNIFICANT

2606
01:56:40,916 --> 01:56:43,985
AND AT SUCH A YOUNG AGE IT WAS 

2607
01:56:43,985 --> 01:56:45,287
VERY TRAUMATIC.

2608
01:56:45,287 --> 01:56:48,924
SO ONE OF THE THINGS I'D LIKE TO

2609
01:56:48,924 --> 01:56:53,195
TALK ABOUT IS THE TRAUMA 

2610
01:56:53,195 --> 01:56:56,798
EXPERIENCED WITH HAVING THIS 

2611
01:56:56,798 --> 01:57:05,173
DISEASE -- ESPECIALLY FOR THE 

2612
01:57:05,173 --> 01:57:06,842
DISFIGUREMENT AND NOT KNOWING 

2613
01:57:06,842 --> 01:57:09,811
WHAT IT IS.

2614
01:57:09,811 --> 01:57:11,947
IT'S VERY IMPORTANT FOR TIMERY 

2615
01:57:11,947 --> 01:57:15,951
CARE PHYSICIANS FOR THERAPISTS 

2616
01:57:15,951 --> 01:57:23,325
THEY RECOMMEND AND APPROVE 

2617
01:57:23,325 --> 01:57:32,200
BEHAVIORAL COGNITIVE THERAPY.

2618
01:57:32,200 --> 01:57:33,168
IT'S NOT ADDRESSED ENOUGH AND A 

2619
01:57:33,168 --> 01:57:43,712
TOOL THAT NEEDS TO BE ADDRESSED.

2620
01:57:47,115 --> 01:57:48,283
THERE'S STILL SO FEW THERAPISTS 

2621
01:57:48,283 --> 01:57:49,284
OUT THERE.

2622
01:57:49,284 --> 01:57:51,920
WHEN I WAS INITIALLY DIAGNOSED I

2623
01:57:51,920 --> 01:57:54,122
WAS TRAVELLING 50 MILES ROUND 

2624
01:57:54,122 --> 01:57:56,491
TRIP EVERY DAY DURING MY NORMAL 

2625
01:57:56,491 --> 01:58:01,630
WORKDAY TO GO GET THERAPY.

2626
01:58:01,630 --> 01:58:02,798
THERE'S STILL SO MANY PRIMARY 

2627
01:58:02,798 --> 01:58:06,501
CARE PHYSICIANS.

2628
01:58:06,501 --> 01:58:07,903
THEY DON'T KNOW HOW TO ADDRESS 

2629
01:58:07,903 --> 01:58:09,938
IT OR CODE IT EVEN.

2630
01:58:09,938 --> 01:58:12,674
I HAVE BEEN SELF-MANAGING MY 

2631
01:58:12,674 --> 01:58:15,944
LYMPHEDEMA NOW PROBABLY 20 PLUS 

2632
01:58:15,944 --> 01:58:16,411
YEARS.

2633
01:58:16,411 --> 01:58:21,183
SO I'M NOT SEEING A THERAPIST ON

2634
01:58:21,183 --> 01:58:30,325
A REGULAR BASIS.

2635
01:58:30,325 --> 01:58:33,195
WHEN I NEED A COMPRESSION 

2636
01:58:33,195 --> 01:58:38,133
GARMENT I HAVE SOMEONE WHO WORKS

2637
01:58:38,133 --> 01:58:43,471
WITH ME AND I CAN PAY FOR IT 

2638
01:58:43,471 --> 01:58:45,207
THROUGH HSA IT COMES FROM MY 

2639
01:58:45,207 --> 01:58:51,146
POCKET.

2640
01:58:51,146 --> 01:58:53,815
ANOTHER THING WITH INSURANCE 

2641
01:58:53,815 --> 01:58:56,384
COMPANIES AND NOT JUST 

2642
01:58:56,384 --> 01:58:58,520
COMPRESSION GARMENT I BELONG TO 

2643
01:58:58,520 --> 01:58:59,621
A FACEBOOK LYMPHEDEMA SUPPORT 

2644
01:58:59,621 --> 01:59:03,859
GROUP COMMUNITY AND HEAR SO MANY

2645
01:59:03,859 --> 01:59:05,594
PEOPLE TALK ABOUT THE ISSUES 

2646
01:59:05,594 --> 01:59:06,561
WITH CLOTHING AND SHOES.

2647
01:59:06,561 --> 01:59:09,931
FOR MYSELF, I CANNOT WEAR A 

2648
01:59:09,931 --> 01:59:17,505
NORMAL SHOE ON MY LEFT FOOT I 

2649
01:59:17,505 --> 01:59:24,379
HAVE TO WEAR A CAST SHOE WHEN I 

2650
01:59:24,379 --> 01:59:27,015
BUY SHOES I PAY FULL PRICE AND 

2651
01:59:27,015 --> 01:59:28,683
I'VE BEEN DONATING THE LEFT SHOE

2652
01:59:28,683 --> 01:59:32,187
TO A CHARITY BUT I THINK IF 

2653
01:59:32,187 --> 01:59:34,522
INSURANCE COULD HELP ALLEVIATE 

2654
01:59:34,522 --> 01:59:36,791
SOME OF THAT BURDEN WITH PEOPLE,

2655
01:59:36,791 --> 01:59:42,397
THAT WOULD BE AMAZING TOO.

2656
01:59:42,397 --> 01:59:47,168
BUT I AM SO DEEPLY GRATEFUL TO 

2657
01:59:47,168 --> 01:59:52,841
EVERYONE ON THE CALL CHAMPIONING

2658
01:59:52,841 --> 01:59:55,610
THIS DISEASE.

2659
01:59:55,610 --> 01:59:56,244
AND THEY'RE MAKING GREAT SLIDES 

2660
01:59:56,244 --> 02:00:02,150
SO THANK YOU VERY MUCH.

2661
02:00:02,150 --> 02:00:05,987
>> THANK YOU VERY MUCH.

2662
02:00:05,987 --> 02:00:09,190
THIS WAS VERY POWERFUL.

2663
02:00:09,190 --> 02:00:09,958
THANK YOU FOR SHARING 

2664
02:00:09,958 --> 02:00:11,293
COURAGEOUSLY YOUR EXPERIENCES.

2665
02:00:11,293 --> 02:00:19,334
WITH THAT I WANT TO INVITE 

2666
02:00:19,334 --> 02:00:20,068
CHEYANNE BACK.

2667
02:00:20,068 --> 02:00:21,670
I CUT OFF HER PRESENTATION.

2668
02:00:21,670 --> 02:00:22,804
SHE HAS HER PATIENT EXPERIENCE 

2669
02:00:22,804 --> 02:00:25,006
TO SHARE AS WELL AND THAT'S THE 

2670
02:00:25,006 --> 02:00:26,508
LAST ONE.

2671
02:00:26,508 --> 02:00:26,875
THANK YOU.

2672
02:00:26,875 --> 02:00:28,476
>> THANK YOU.

2673
02:00:28,476 --> 02:00:30,378
NOT ONLY AM I THE PRESIDENT MUCH

2674
02:00:30,378 --> 02:00:33,181
DRF I'M A PATIENT WITH 

2675
02:00:33,181 --> 02:00:33,848
LYMPHEDEMA.

2676
02:00:33,848 --> 02:00:36,418
I HAVE OBESITY BUT THAT HASN'T 

2677
02:00:36,418 --> 02:00:37,485
ALWAYS BEEN THE CASE.

2678
02:00:37,485 --> 02:00:45,060
I WAS A SMALL AND THIN CHILD AT 

2679
02:00:45,060 --> 02:00:47,595
14 I WEIGHED 108 POUNDS BECAUSE 

2680
02:00:47,595 --> 02:00:51,299
I WAS SHAPED DIFFERENTLY I BEGAN

2681
02:00:51,299 --> 02:00:53,401
TO GET TEASED BY MY FAMILY 

2682
02:00:53,401 --> 02:00:57,505
CALLED THUNDER THIGHS AND HIPS 

2683
02:00:57,505 --> 02:01:00,809
AND DOCTORS SAID I WASN'T EATING

2684
02:01:00,809 --> 02:01:01,476
ENOUGH.

2685
02:01:01,476 --> 02:01:03,878
BEGINNING OF MY EARLY 20s I 

2686
02:01:03,878 --> 02:01:06,748
EXPERIENCED PERIODS OF 

2687
02:01:06,748 --> 02:01:09,150
UNEXPLAINED WEIGHT GAIN DESPITE 

2688
02:01:09,150 --> 02:01:09,951
CALORIC RESTRICTION AND 

2689
02:01:09,951 --> 02:01:10,251
EXERCISE.

2690
02:01:10,251 --> 02:01:12,354
I WOULD MAINTAIN THE SAME WEIGHT

2691
02:01:12,354 --> 02:01:15,290
SEVERAL YEARS AND IN MONTHS GAIN

2692
02:01:15,290 --> 02:01:16,391
15 POUNDS.

2693
02:01:16,391 --> 02:01:17,525
I'VE BEEN TO A NUMBER OF 

2694
02:01:17,525 --> 02:01:18,393
PHYSICIANS OVER THE YEARS AND 

2695
02:01:18,393 --> 02:01:23,231
WITH THE EXCEPTION OF ONE, I 

2696
02:01:23,231 --> 02:01:25,066
DIDN'T ENCOUNTER DISMISSIVE OR 

2697
02:01:25,066 --> 02:01:31,406
CONDESCENDING PHYSICIANS.

2698
02:01:31,406 --> 02:01:34,542
I'M ONE OF THE LUCKY FEW.

2699
02:01:34,542 --> 02:01:36,144
MANY HAVE HORRIBLE EXPERIENCES 

2700
02:01:36,144 --> 02:01:36,611
WITH PROVIDERS.

2701
02:01:36,611 --> 02:01:40,448
IN JUNE OF 2014, MONTHS BEFORE 

2702
02:01:40,448 --> 02:01:42,984
MY 40th BIRTHDAY I DISCOVERED 

2703
02:01:42,984 --> 02:01:50,759
THERE WAS A NAME FOR WHAT I HAD,

2704
02:01:50,759 --> 02:01:51,126
LYMPHEDEMA.

2705
02:01:51,126 --> 02:01:53,561
THERE WAS A DIAGNOSIS AND I HAD 

2706
02:01:53,561 --> 02:01:55,930
LIPO SUCTION IN 2015 AND THE 

2707
02:01:55,930 --> 02:01:58,166
PAIN IMMEDIATELY REDUCED BY 90%.

2708
02:01:58,166 --> 02:02:00,368
MY ACTIVITIES OF DAILY LIVING 

2709
02:02:00,368 --> 02:02:01,269
IMPROVED TREMENDOUSLY.

2710
02:02:01,269 --> 02:02:03,571
I WAS ABLE TO LIFT MORE WEIGHT, 

2711
02:02:03,571 --> 02:02:09,177
WALK FASTER AND BEND MY KNEES.

2712
02:02:09,177 --> 02:02:14,582
MY HUSBAND COULD WRAP HIS ARMS 

2713
02:02:14,582 --> 02:02:18,319
AROUND ME WITHOUT PAIN AND DID 

2714
02:02:18,319 --> 02:02:19,687
EXERCISE ON A HARD SERVICE AND 

2715
02:02:19,687 --> 02:02:22,424
DID WELL FOR THREE YEARS BUT MY 

2716
02:02:22,424 --> 02:02:24,092
LIFE TOOK SERIOUS TURNS.

2717
02:02:24,092 --> 02:02:26,561
WE RELOCATED, MY WORK GOT BUSIER

2718
02:02:26,561 --> 02:02:30,131
AND I ALLOWED MY NUTRITION TO 

2719
02:02:30,131 --> 02:02:30,331
SLIP.

2720
02:02:30,331 --> 02:02:32,700
I GAINED OVER A HUNDRED POUNDS 

2721
02:02:32,700 --> 02:02:36,171
IN ABOUT A YEAR WITH A 

2722
02:02:36,171 --> 02:02:38,239
COMBINATION OF STRESS, POOR 

2723
02:02:38,239 --> 02:02:45,013
NUTRITION AND PERIMENOPAUSE AND 

2724
02:02:45,013 --> 02:02:48,316
HAVE LATE DIAGNOSED ADHD.

2725
02:02:48,316 --> 02:02:49,451
LYMPHEDEMA IS THE GIFT THAT 

2726
02:02:49,451 --> 02:02:51,419
KEEPS GIVING.

2727
02:02:51,419 --> 02:02:53,121
HAD I BEEN DIAGNOSED IN MY EARLY

2728
02:02:53,121 --> 02:02:57,192
20s OR TEENAGER I COULD HAVE 

2729
02:02:57,192 --> 02:03:01,162
LEARNED NEWER NUTRITION.

2730
02:03:01,162 --> 02:03:03,932
WITH EARLY DIAGNOSIS I COULD 

2731
02:03:03,932 --> 02:03:06,968
HAVE STARTED CONSERVATIVE 

2732
02:03:06,968 --> 02:03:08,603
TREATMENTS EARLIER AND PERHAPS 

2733
02:03:08,603 --> 02:03:12,874
SAVED MYSELF PAIN AND SUFFERING 

2734
02:03:12,874 --> 02:03:13,141
AND MONEY.

2735
02:03:13,141 --> 02:03:16,411
MY HOPE IS EVERY DOCTOR IN 

2736
02:03:16,411 --> 02:03:18,413
AMERICA RECEIVES TRAINING IN 

2737
02:03:18,413 --> 02:03:19,814
MEDICAL SCHOOL STARTING WITH 

2738
02:03:19,814 --> 02:03:21,483
PRIMARY CARE IN LYMPHEDEMA.

2739
02:03:21,483 --> 02:03:22,584
WE NEED EARLY DIAGNOSIS, 

2740
02:03:22,584 --> 02:03:25,220
SCREENING AS A CHILD AND WE NEED

2741
02:03:25,220 --> 02:03:27,455
AFFORDABLE OPTIONS FOR TREATMENT

2742
02:03:27,455 --> 02:03:28,556
THAT AREN'T MEDICATION.

2743
02:03:28,556 --> 02:03:31,693
MANY OF THE TREATMENTS ARE 

2744
02:03:31,693 --> 02:03:33,261
SELF-CARE BUT WE AS A SOCIETY 

2745
02:03:33,261 --> 02:03:34,963
AREN'T ALL MASTERS OF SELF-CARE 

2746
02:03:34,963 --> 02:03:36,731
AND NEED MORE COACHING.

2747
02:03:36,731 --> 02:03:39,868
PERHAPS CASE MANAGERS TO HELP 

2748
02:03:39,868 --> 02:03:41,002
PATIENTS STRUGGLING, VIRTUAL 

2749
02:03:41,002 --> 02:03:41,836
OPTIONS.

2750
02:03:41,836 --> 02:03:43,872
THE OPTIONS ARE ENDLESS AND I'M 

2751
02:03:43,872 --> 02:03:46,441
TRULY HONORED TO SHARE MY STORY 

2752
02:03:46,441 --> 02:03:47,942
IN THIS TOWN HALL AND FOR ALL 

2753
02:03:47,942 --> 02:03:51,045
THE WORK THE NIH IS DOING AND 

2754
02:03:51,045 --> 02:03:52,480
THANK YOU GUYS AGAIN FOR 

2755
02:03:52,480 --> 02:03:54,549
ALLOWING US TO BE ABLE TO TALK 

2756
02:03:54,549 --> 02:03:55,183
ABOUT THIS VERY IMPORTANT TOPIC 

2757
02:03:55,183 --> 02:04:03,258
TODAY.

2758
02:04:03,258 --> 02:04:04,559
THANK YOU EVERYONE FOR SHARING 

2759
02:04:04,559 --> 02:04:08,196
YOUR STOWES.

2760
02:04:08,196 --> 02:04:10,698
NOW'S THE TIME TO OPEN THE 

2761
02:04:10,698 --> 02:04:15,303
DISCUSSION SESSION AND TURN IT 

2762
02:04:15,303 --> 02:04:15,870
TO CO-CHAIR.

2763
02:04:15,870 --> 02:04:24,012
>> I WANT TO ECHO SELEN'S
THANKS

2764
02:04:24,012 --> 02:04:34,522
TO EVERYONE FOR SHARING YOUR 

2765
02:04:34,989 --> 02:04:35,657
STORIES AS PART OF THE CONTINUED

2766
02:04:35,657 --> 02:04:36,791
FIGHT FOR ALL THE PEOPLE WE 

2767
02:04:36,791 --> 02:04:42,096
COLLECTIVELY SERVE.

2768
02:04:42,096 --> 02:04:43,865
IT'S HEARTENING TO SEE THE 

2769
02:04:43,865 --> 02:04:48,870
STRONG AUTO ALIGNMENT WITH THE 

2770
02:04:48,870 --> 02:04:49,637
PRIORITIES AND THE COMMITTEES 

2771
02:04:49,637 --> 02:04:55,577
WE'VE CREATED AND THEIR FOCUSSED

2772
02:04:55,577 --> 02:04:57,946
AREAS OF SCIENTIFIC ADVANCEMENT,

2773
02:04:57,946 --> 02:05:00,215
THIRD PARTY TOOLS AND ON AND ON.

2774
02:05:00,215 --> 02:05:01,282
IT SHOWS ME WE'RE MOVING IN THE 

2775
02:05:01,282 --> 02:05:07,288
RIGHT DIRECTION.

2776
02:05:07,288 --> 02:05:17,365
I HEARD A FEW NEW ANGLES.

2777
02:05:17,365 --> 02:05:21,202
THE ROLE OF FOOD AS MEDICINE AND

2778
02:05:21,202 --> 02:05:22,070
ROLE OF SOCIAL MEDIA AROUND 

2779
02:05:22,070 --> 02:05:24,305
FOCUS ON THE MOMENT OF 

2780
02:05:24,305 --> 02:05:24,572
PREGNANCY.

2781
02:05:24,572 --> 02:05:27,942
AND WHAT THAT MEANS FOR US AND 

2782
02:05:27,942 --> 02:05:38,186
OUR PATIENTS.

2783
02:05:51,232 --> 02:05:52,133
PLEASE USE THE RAISE HAND 

2784
02:05:52,133 --> 02:06:02,277
FEATURE.

2785
02:06:05,246 --> 02:06:06,481
IN PARTICULAR TO ADDRESS THOSE 

2786
02:06:06,481 --> 02:06:09,150
WHO ARE MESSAGING US ABOUT 

2787
02:06:09,150 --> 02:06:09,417
MEDICARE.

2788
02:06:09,417 --> 02:06:15,556
I WANT TO REASSURE YOU WE ARE 

2789
02:06:15,556 --> 02:06:21,162
INTERACTING WITH CMS TO 

2790
02:06:21,162 --> 02:06:24,899
UNDERSTAND WHAT IS POSSIBLE.

2791
02:06:24,899 --> 02:06:26,100
HARDENED TO SEE SO MUCH 

2792
02:06:26,100 --> 02:06:30,004
ALIGNMENT BETWEEN ALL OF YOU AND

2793
02:06:30,004 --> 02:06:30,672
WITH US AS WELL.

2794
02:06:30,672 --> 02:06:32,373
BECAUSE THERE ARE SO MANY 

2795
02:06:32,373 --> 02:06:34,375
OVERLAPPING THEMES IN YOUR WORK,

2796
02:06:34,375 --> 02:06:36,678
NOT TO MENTION ALL THOSE WE'RE 

2797
02:06:36,678 --> 02:06:38,880
TO HEAR FROM IN THE NEXT TOWN 

2798
02:06:38,880 --> 02:06:40,748
HALL WITH THE FOUNDATION AND 

2799
02:06:40,748 --> 02:06:42,317
LYMPHATIC ANOMALIES, MY QUESTION

2800
02:06:42,317 --> 02:06:43,951
FOR ALL OF YOU IS WHAT DO YOU 

2801
02:06:43,951 --> 02:06:46,154
THINK WOULD BE POSSIBLE IF WE 

2802
02:06:46,154 --> 02:06:49,257
ALL JOINED FORCES AND MORE 

2803
02:06:49,257 --> 02:06:51,059
INTENTIONALLY WORKED TOGETHER?

2804
02:06:51,059 --> 02:06:56,564
I WOULD LOVE TO HEAR ON WHAT WE 

2805
02:06:56,564 --> 02:06:58,566
THINK COULD BE POSSIBLE WHAT 

2806
02:06:58,566 --> 02:07:00,068
GETS IN THE WAY AND WHAT COULD A

2807
02:07:00,068 --> 02:07:02,870
DEEPER COLLABORATION LOOK LIKE.

2808
02:07:02,870 --> 02:07:06,007
I'LL INVITE OUR GUESTS TO SHARE 

2809
02:07:06,007 --> 02:07:06,541
YOUR PERSPECTIVE ON THAT 

2810
02:07:06,541 --> 02:07:12,513
QUESTION.

2811
02:07:12,513 --> 02:07:14,549
>> HI, EVERYONE.

2812
02:07:14,549 --> 02:07:16,317
PLEASE GET ON YOUR VIDEO AND 

2813
02:07:16,317 --> 02:07:21,923
START SPEAKING OR PUT YOUR HANDS

2814
02:07:21,923 --> 02:07:31,466
UP.

2815
02:07:31,466 --> 02:07:33,334
JENNIFER, SINCE YOU PUT YOUR 

2816
02:07:33,334 --> 02:07:35,103
VIDEO ON, WOULD YOU LIKE TO 

2817
02:07:35,103 --> 02:07:35,336
ANSWER.

2818
02:07:35,336 --> 02:07:44,045
>> I WAS JUST FIXING MY
HAIR BUT

2819
02:07:44,045 --> 02:07:45,179
SURE.

2820
02:07:45,179 --> 02:07:47,582
I'M TAKING THE ANGLE OF 

2821
02:07:47,582 --> 02:07:48,282
EDUCATION AND USING SOCIAL 

2822
02:07:48,282 --> 02:07:48,950
MEDIA.

2823
02:07:48,950 --> 02:07:54,489
IF WE'RE ALL SENDING A SIMILAR 

2824
02:07:54,489 --> 02:08:02,096
MESSAGE OR DISSEMINATING IN A 

2825
02:08:02,096 --> 02:08:06,901
SIMILAR WAY IS POSSIBLE.

2826
02:08:06,901 --> 02:08:08,536
WE ARE ALL WORKING TOWARDS THE 

2827
02:08:08,536 --> 02:08:09,637
SAME GOAL AND WOULD BE POWERFUL 

2828
02:08:09,637 --> 02:08:20,148
TO FIGURE OUT HOW TO DO THAT.

2829
02:08:26,554 --> 02:08:28,890
THERE WERE SIMILAR THEMES 

2830
02:08:28,890 --> 02:08:30,625
AMONGST ALL THIS.

2831
02:08:30,625 --> 02:08:32,593
WHILE WE HAD A SLIGHTLY 

2832
02:08:32,593 --> 02:08:33,261
DIFFERENT PERSPECTIVE ON WHAT 

2833
02:08:33,261 --> 02:08:35,963
THAT MEANT TO OUR MEMBERS AND 

2834
02:08:35,963 --> 02:08:38,032
CLIENTS WE SERVE, I THINK IT'S A

2835
02:08:38,032 --> 02:08:42,069
GREAT FOUNDATION FOR US TO WORK 

2836
02:08:42,069 --> 02:08:43,538
FROM TO FIGURE OUT HOW CAN WE 

2837
02:08:43,538 --> 02:08:46,908
TAKE OUR UNIQUE PERSPECTIVES AND

2838
02:08:46,908 --> 02:08:57,185
USE THAT IN A JOINT EFFORT TO 

2839
02:08:57,185 --> 02:09:00,421
IMPACT REAL DIFFERENCE.

2840
02:09:00,421 --> 02:09:01,856
>> LINDA.

2841
02:09:01,856 --> 02:09:08,095
>> I WAS GIVING A LECTURE
TO A 

2842
02:09:08,095 --> 02:09:12,300
PODIATRIST IN UCONN RECENTLY AND

2843
02:09:12,300 --> 02:09:13,701
WAS DISAPPOINTED TO LEARNING 

2844
02:09:13,701 --> 02:09:18,439
THEY WERE STILL LEARNING THE OLD

2845
02:09:18,439 --> 02:09:19,540
STARLING'S LOST AND LYMPHATICS 

2846
02:09:19,540 --> 02:09:25,146
ONLY PLAY A 10% ROLE IN PLANKING

2847
02:09:25,146 --> 02:09:29,784
EXTRA CELLULAR FLUID.

2848
02:09:29,784 --> 02:09:34,922
I WONDER IS THERE A WAY TO MAKE 

2849
02:09:34,922 --> 02:09:40,294
SURE WHAT THEY'RE LEARNING IS UP

2850
02:09:40,294 --> 02:09:47,335
TO DATE AND PERHAPS CONNECTING 

2851
02:09:47,335 --> 02:09:51,272
FOLKS WITH LYMPHATIC EXPERTISE 

2852
02:09:51,272 --> 02:09:52,306
CAN PROVIDE EDUCATION AT THE 

2853
02:09:52,306 --> 02:09:57,211
MEDICAL SCHOOLS.

2854
02:09:57,211 --> 02:10:01,349
THANK YOU, I AGREE.

2855
02:10:01,349 --> 02:10:10,057
WE'RE SPEAKING IN OUR 

2856
02:10:10,057 --> 02:10:19,433
STAKEHOLDER CONVERSATION FOR 

2857
02:10:19,433 --> 02:10:20,835
EXAMPLE MANY FIELDS INTERNAL 

2858
02:10:20,835 --> 02:10:28,175
MEDICINE AND SURGERY AND OTHERS.

2859
02:10:28,175 --> 02:10:30,144
WE HOPE IT WILL LEAD TO 

2860
02:10:30,144 --> 02:10:33,648
RECOMMENDATIONS TO THE REPORT 

2861
02:10:33,648 --> 02:10:42,523
LEADING TO ACTION IN ADDITION 

2862
02:10:42,523 --> 02:10:44,559
BEFORE THE NIH RELEASES ITS 

2863
02:10:44,559 --> 02:10:45,226
RECOMMENDATION.

2864
02:10:45,226 --> 02:10:51,165
I HAVE A RETURN QUESTION FOR THE

2865
02:10:51,165 --> 02:11:01,709
MANY INDIVIDUALS IN THE MEETING 

2866
02:11:04,478 --> 02:11:10,184
AS MEMBERS IS THERE A WAY TO 

2867
02:11:10,184 --> 02:11:17,191
GENERATE CONVERSATION FROM.

2868
02:11:17,191 --> 02:11:27,635
THE THIS IS AFTER FORMAL 

2869
02:11:40,214 --> 02:11:41,382
CERTIFICATION AFTER SKILL SETS 

2870
02:11:41,382 --> 02:11:51,459
AND HOW CAN WE SPUR ON GREATER 

2871
02:11:51,459 --> 02:11:53,260
INVOLVEMENT SO THE RESOURCES ARE

2872
02:11:53,260 --> 02:12:03,638
MORE WIDELY AVAILABLE.

2873
02:12:05,206 --> 02:12:15,683
>> I TRY TO ENCOURAGE
STUDENTS 

2874
02:12:16,283 --> 02:12:17,218
AND DECIDE THE IS SOMETHING THEY

2875
02:12:17,218 --> 02:12:22,857
WANT TO DO AND SEE PATIENTS 

2876
02:12:22,857 --> 02:12:33,401
OUTSIDE AND I TRY TO STAY ON TOP

2877
02:12:36,003 --> 02:12:37,505
OF INFORMATION AND ENCOURAGE 

2878
02:12:37,505 --> 02:12:38,205
PEOPLE IN MY NETWORK TO DO THE 

2879
02:12:38,205 --> 02:12:48,315
SAME.

2880
02:13:10,638 --> 02:13:14,175
>> WE HAVE IT AS ENTRY
LEVEL 

2881
02:13:14,175 --> 02:13:17,878
BOARD EXAMINATIONS AND 

2882
02:13:17,878 --> 02:13:19,580
LYMPHATICS IS ITS OWN THING.

2883
02:13:19,580 --> 02:13:20,581
WE'RE EMPHASIZING IT AS MUCH AS 

2884
02:13:20,581 --> 02:13:23,851
WE CAN.

2885
02:13:23,851 --> 02:13:27,588
THE LACK OF PHYSICAL THERAPISTS 

2886
02:13:27,588 --> 02:13:32,426
IN ACADEMIA TO ADEQUATELY 

2887
02:13:32,426 --> 02:13:41,368
INSTRUCT IS A LIMITING FACTOR.

2888
02:13:41,368 --> 02:13:51,879
AND THE TRAINING IS IMPORTANT 

2889
02:14:03,224 --> 02:14:05,826
FOR THE PATIENTS AND IT MAY BE 

2890
02:14:05,826 --> 02:14:10,798
AN AWARENESS.

2891
02:14:10,798 --> 02:14:16,003
AND WE'RE TRYING TO PROMOTE THAT

2892
02:14:16,003 --> 02:14:16,604
AS WELL.

2893
02:14:16,604 --> 02:14:21,308
FOR THE SPECIFIC LYMPHATIC 

2894
02:14:21,308 --> 02:14:24,111
TRAINING WE'RE STILL AN ADVOCATE

2895
02:14:24,111 --> 02:14:34,655
OF IT BEING POST GRADUATE LEVEL.

2896
02:14:35,289 --> 02:14:45,766
>> PART OF WHAT THE NLN'S
FIS

2897
02:14:47,635 --> 02:14:51,505
INITIATIVE IS OFFERING MORE 

2898
02:14:51,505 --> 02:14:54,775
EMERSION ACROSS THEY CAN BE USED

2899
02:14:54,775 --> 02:14:59,113
IN THE FIELDS AND SETTINGS AND 

2900
02:14:59,113 --> 02:15:01,315
TRYING TO WORK WITH WE'VE BEEN 

2901
02:15:01,315 --> 02:15:05,219
APPROACHED BY MULTIPLE DEANS AND

2902
02:15:05,219 --> 02:15:07,454
OTHER PROFESSORS STATING HOW 

2903
02:15:07,454 --> 02:15:09,256
THERAPISTS ARE NOT PASSING ON 

2904
02:15:09,256 --> 02:15:10,524
THE LYMPHATIC QUESTIONS AND 

2905
02:15:10,524 --> 02:15:17,131
SEEMS TO BE AN ISSUE OF CONCERN 

2906
02:15:17,131 --> 02:15:22,536
SO WE'RE TRYING TO PROMOTE THAT 

2907
02:15:22,536 --> 02:15:28,008
BY OFFERING THIS EDUCATION 

2908
02:15:28,008 --> 02:15:36,317
DURING CONFERENCES AS WELL.

2909
02:15:36,317 --> 02:15:42,590
>> THE EXPERIENCE OF
LYMPHEDEMA 

2910
02:15:42,590 --> 02:15:47,995
WAS MINOR TO CENTRAL LYMPHATIC 

2911
02:15:47,995 --> 02:15:49,196
SYSTEM.

2912
02:15:49,196 --> 02:15:51,065
I'M IN BOSTON.

2913
02:15:51,065 --> 02:15:53,367
THE EPICENTER OF MEDICAL CARE.

2914
02:15:53,367 --> 02:15:57,204
FIVE BIG HOSPITALS AND NO ONE 

2915
02:15:57,204 --> 02:16:07,314
KNEW.

2916
02:16:16,724 --> 02:16:17,925
COMMUNITY IS THE HEART OF WHAT 

2917
02:16:17,925 --> 02:16:20,861
WE ARE AND WHAT WE DO AS A 

2918
02:16:20,861 --> 02:16:22,029
GREATER COMMUNITY BECAUSE IT WAS

2919
02:16:22,029 --> 02:16:25,199
THROUGH THE COMMUNITY THAT I 

2920
02:16:25,199 --> 02:16:29,303
FOUND MAX.

2921
02:16:29,303 --> 02:16:30,004
THEY GOT SUPPORT.

2922
02:16:30,004 --> 02:16:34,008
I HAD TO DRIVE DOWN TO U-PENN 

2923
02:16:34,008 --> 02:16:38,979
SEVEN TIMES TO GET THE HELP I 

2924
02:16:38,979 --> 02:16:40,080
NEEDED WHICH WAS A 15 HOUR DRIVE

2925
02:16:40,080 --> 02:16:44,551
EACH WAY.

2926
02:16:44,551 --> 02:16:51,158
WE'RE TALKING WHAT WE NEED TO DO

2927
02:16:51,158 --> 02:16:53,327
ALWAYS ENDS UP BEING ACTS OF 

2928
02:16:53,327 --> 02:16:59,600
GREAT COURAGE FOR ALL OF US.

2929
02:16:59,600 --> 02:17:02,870
THAT WE HAVE EACH OTHER MAKES A 

2930
02:17:02,870 --> 02:17:03,170
DIFFERENCE.

2931
02:17:03,170 --> 02:17:03,971
I WAS BLOWN AWAY.

2932
02:17:03,971 --> 02:17:07,207
I FINALLY SAID I NEED TO LEARN 

2933
02:17:07,207 --> 02:17:09,643
EVERYTHING I CAN ABOUT THE 

2934
02:17:09,643 --> 02:17:10,611
LYMPHATIC SYSTEM I THOUGHT I 

2935
02:17:10,611 --> 02:17:13,714
KNEW AND DIDN'T.

2936
02:17:13,714 --> 02:17:15,015
DO YOU KNOW THREE-QUARTERS OF 

2937
02:17:15,015 --> 02:17:19,386
THE FLUID IN YOUR BODY IS 

2938
02:17:19,386 --> 02:17:27,261
TRANSPORTED FROM THE THORACIC 

2939
02:17:27,261 --> 02:17:31,665
DUCT GOES TO ONE LITTLE PLACE.

2940
02:17:31,665 --> 02:17:32,633
THREE QUARTERS OF THE ENTIRE 

2941
02:17:32,633 --> 02:17:34,535
FLUID IN OUR BODY.

2942
02:17:34,535 --> 02:17:38,672
I CALLED MY OLD PRIMARY CARE 

2943
02:17:38,672 --> 02:17:40,240
PHYSICIAN AND SAY WHY?

2944
02:17:40,240 --> 02:17:45,112
WE DON'T KNOW.

2945
02:17:45,112 --> 02:17:46,347
THAT'S THE WAY IT IS.

2946
02:17:46,347 --> 02:17:47,915
MAX, YOU HAVE SOMETHING TO SAY.

2947
02:17:47,915 --> 02:17:48,082
IT 

2948
02:17:48,082 --> 02:17:58,492
>> THANK YOU VERY MUCH.

2949
02:18:00,661 --> 02:18:03,998
AN ISSUE IS EDUCATION AND 

2950
02:18:03,998 --> 02:18:05,199
ENDORSEMENT AND REIMBURSEMENT 

2951
02:18:05,199 --> 02:18:07,534
AAS A COMMITTEE WE'LL TRY TO 

2952
02:18:07,534 --> 02:18:12,106
ENCOURAGE GOVERNMENT TO DO 

2953
02:18:12,106 --> 02:18:19,213
BETTER BUT ADVOCACY GROUP LUKE 

2954
02:18:19,213 --> 02:18:25,219
YOURS MOVE THE NEEDLE AND IT'S 

2955
02:18:25,219 --> 02:18:31,925
THE RESULT OF YOUR ADVOCACY AND 

2956
02:18:31,925 --> 02:18:33,560
BEHIND THE HUGE PUSH.

2957
02:18:33,560 --> 02:18:35,329
BUT IN EUROPE 90% OF THE 

2958
02:18:35,329 --> 02:18:43,103
PATIENTS THAT COME TO US ARE 

2959
02:18:43,103 --> 02:18:43,570
SELF-REFERRED.

2960
02:18:43,570 --> 02:18:49,209
THROUGH FACEBOOK AND THE 

2961
02:18:49,209 --> 02:18:52,279
CONDIT

2962
02:18:52,279 --> 02:18:57,618
CONDITIONS EVERY PATIENT COMES 

2963
02:18:57,618 --> 02:19:07,494
TO US AND WE HAVE A VAE GOOD 

2964
02:19:07,494 --> 02:19:10,264
SUCCESS AND AMAZING PAPER IT'S 

2965
02:19:10,264 --> 02:19:15,803
HARD TO PUBLISH IN THE 

2966
02:19:15,803 --> 02:19:18,105
LITERATURE.

2967
02:19:18,105 --> 02:19:21,341
THERE'S SUCCESSFUL TREATMENT.

2968
02:19:21,341 --> 02:19:26,713
I WOULD LIKE TO ASK EVERYBODY, 

2969
02:19:26,713 --> 02:19:29,183
WHAT IS YOUR THOUGHT ABOUT THE 

2970
02:19:29,183 --> 02:19:34,021
BEST VENUE TO THE PATIENTS?

2971
02:19:34,021 --> 02:19:35,622
MUCH COURSE SOCIAL MEDIA IS ONE 

2972
02:19:35,622 --> 02:19:36,723
OF THEM BUT ANYTHING ELSE WE CAN

2973
02:19:36,723 --> 02:19:47,267
DO TO REACH OUT TO THE PATIENTS 

2974
02:19:53,540 --> 02:19:54,508
TO SPREAD KNOWLEDGE AND 

2975
02:19:54,508 --> 02:19:55,542
TECHNIQUES AND WHAT'S THE BEST 

2976
02:19:55,542 --> 02:19:57,845
WAY TO REACH OUT TO THE PATIENT 

2977
02:19:57,845 --> 02:19:58,145
POPULATION.

2978
02:19:58,145 --> 02:20:05,853
ANYBODY?

2979
02:20:05,853 --> 02:20:07,721
>> WHAT BECOMES POSSIBLE
AND HOW

2980
02:20:07,721 --> 02:20:08,789
MIGHT WE QUESTIONS, WHEN I WAS 

2981
02:20:08,789 --> 02:20:12,893
TRYING TO GET A FUNCTIONAL 

2982
02:20:12,893 --> 02:20:16,163
CAPACITY EXAMINE TO BE ABLE TO 

2983
02:20:16,163 --> 02:20:26,673
SHOW MY DETERIORATION THE OTT 

2984
02:20:26,874 --> 02:20:28,375
HAD A STORY AND THERE'S POCKETS 

2985
02:20:28,375 --> 02:20:29,510
OF PEOPLE WHO CARE BUT DON'T 

2986
02:20:29,510 --> 02:20:31,211
KNOW WHAT TO DO WITH IT.

2987
02:20:31,211 --> 02:20:37,151
YOUR QUESTION HOW TO REACH THE 

2988
02:20:37,151 --> 02:20:38,018
PATIENTS FOR ME SOCIAL MEDIA IS 

2989
02:20:38,018 --> 02:20:43,056
HOW I FOUND IT.

2990
02:20:43,056 --> 02:20:53,600
I FOUND THE DOCUMENTARY AND EVEN

2991
02:21:00,374 --> 02:21:05,546
IF YOU SCREEN FOR IT OR DEAL 

2992
02:21:05,546 --> 02:21:13,187
WITH OBESITY AND I LEARNED ABOUT

2993
02:21:13,187 --> 02:21:16,390
ADHD BY SEEING HOW MUCH PATIENTS

2994
02:21:16,390 --> 02:21:17,658
WITH LYMPHEDEMA HAD IT.

2995
02:21:17,658 --> 02:21:28,202
>> ONE OF MY DREAMS IS TO
HAVE I

2996
02:21:34,708 --> 02:21:39,046
REMEMBER AND REMEMBER THE MANY 

2997
02:21:39,046 --> 02:21:44,751
JUMP ROPE FOR FITNESS AND IF WE 

2998
02:21:44,751 --> 02:21:48,589
TEACH KIDS WHAT THE LYMPHATIC 

2999
02:21:48,589 --> 02:21:49,890
SYSTEM IS AND A LOT OF US ARE 

3000
02:21:49,890 --> 02:21:54,061
BORN WITH IT LIKE MYSELF BUT 

3001
02:21:54,061 --> 02:21:55,062
BEFORE YOU BECOME A PATIENT AS 

3002
02:21:55,062 --> 02:21:56,797
PART OF LEARNING WHAT THE HEART 

3003
02:21:56,797 --> 02:21:59,700
IS, AS PART OF LEARNING WHAT THE

3004
02:21:59,700 --> 02:22:00,634
CARDIOVASCULAR SYSTEM, IT'S LIKE

3005
02:22:00,634 --> 02:22:09,610
WE'RE ABLE TO IDENTIFY IT AND I 

3006
02:22:09,610 --> 02:22:10,611
THINK EVERY CHILD IN THE UNITED 

3007
02:22:10,611 --> 02:22:15,449
STATES SHOULD BE ABLE TO 

3008
02:22:15,449 --> 02:22:17,217
IDENTIFY THEIR MAJOR LYMPH NODES

3009
02:22:17,217 --> 02:22:19,620
AND WHAT IT IS.

3010
02:22:19,620 --> 02:22:27,995
ONE OF MY DREAMS TO OPEN UP A 

3011
02:22:27,995 --> 02:22:34,701
TEXTBOOK AND SEE IT'S DESCRIBED 

3012
02:22:34,701 --> 02:22:36,870
LATER IN LIFE IF YOU DEVELOP 

3013
02:22:36,870 --> 02:22:37,838
COMPLICATIONS YOU USE YOUR 

3014
02:22:37,838 --> 02:22:39,072
CRITICAL THINKING SKILLS AND SAY

3015
02:22:39,072 --> 02:22:41,141
I LEARNED ABOUT THIS AT ONE 

3016
02:22:41,141 --> 02:22:41,742
POINT IN MY LIFE.

3017
02:22:41,742 --> 02:22:45,979
MAYBE THIS IS WHAT IT IS.

3018
02:22:45,979 --> 02:22:49,850
I DON'T KNOW IF THAT'S TOO FAR 

3019
02:22:49,850 --> 02:22:51,518
FETCHED PUT IT'S BEEN A PERSONAL

3020
02:22:51,518 --> 02:22:56,556
DREAM OF MINE TO HAVE THE KIDS 

3021
02:22:56,556 --> 02:23:02,195
ACROSS AMERICA LEARN ABOUT THE 

3022
02:23:02,195 --> 02:23:06,533
LYMPHATIC SYSTEM.

3023
02:23:06,533 --> 02:23:09,202
>> I'D LIKE TO FLIP THE 

3024
02:23:09,202 --> 02:23:10,270
NARRATIVE AND WHY SHOULD THE 

3025
02:23:10,270 --> 02:23:11,338
PATIENTS KNOW AND THE DOCTOR 

3026
02:23:11,338 --> 02:23:12,339
SHOULD BE ABLE TO TELL THEM THEY

3027
02:23:12,339 --> 02:23:13,340
HAVE A CONDITION AND HOW TO 

3028
02:23:13,340 --> 02:23:16,677
TREAT IT.

3029
02:23:16,677 --> 02:23:18,745
WOULD LOVE TO BE ABLE TO GET TO 

3030
02:23:18,745 --> 02:23:20,113
A PLACE WHERE WE HAVE ENOUGH 

3031
02:23:20,113 --> 02:23:24,418
PHYSICIANS EQUIPPED THAT WE KNOW

3032
02:23:24,418 --> 02:23:25,118
ABOUT IT.

3033
02:23:25,118 --> 02:23:27,954
NOW, GRANTED WE'RE NOT THAT 

3034
02:23:27,954 --> 02:23:28,722
CURRENTLY.

3035
02:23:28,722 --> 02:23:29,923
FROM THERE WE'VE ALL TALKED 

3036
02:23:29,923 --> 02:23:31,224
ABOUT SOCIAL MEDIA AND HAVING 

3037
02:23:31,224 --> 02:23:33,026
AWARENESS CAMPAIGNS WHETHER THEY

3038
02:23:33,026 --> 02:23:35,929
BE NOT EVERYONE'S ON SOCIAL 

3039
02:23:35,929 --> 02:23:36,129
MEDIA.

3040
02:23:36,129 --> 02:23:39,866
SO WHETHER THEY BE IN PREP 

3041
02:23:39,866 --> 02:23:41,535
MATERIALS AND NEWSPAPERS BECAUSE

3042
02:23:41,535 --> 02:23:42,636
PEOPLE STILL READ THEM IN 

3043
02:23:42,636 --> 02:23:45,038
POCKETS OF THE COUNTRY, RADIO 

3044
02:23:45,038 --> 02:23:47,007
ADS AND TELEVISION COMMERCIALS.

3045
02:23:47,007 --> 02:23:49,209
A BIG PUBLICITY AND AWARENESS 

3046
02:23:49,209 --> 02:23:56,817
CAMPAIGN.

3047
02:23:56,817 --> 02:24:01,188
>> I THINK HEATHER HAS A
COMMENT

3048
02:24:01,188 --> 02:24:03,357
AND HAND RAISED.

3049
02:24:03,357 --> 02:24:04,391
>> THIS GOES BACK TO
PATIENTS 

3050
02:24:04,391 --> 02:24:06,059
AND FAMILY MEMBERS AND EVERYONE 

3051
02:24:06,059 --> 02:24:09,196
BEING ABLE TO PLAY A ROLE IN 

3052
02:24:09,196 --> 02:24:10,497
INCREASING AWARENESS AND 

3053
02:24:10,497 --> 02:24:13,633
ENCOURAGING MORE THERAPISTS TO 

3054
02:24:13,633 --> 02:24:15,969
GO INTO THIS FIELD.

3055
02:24:15,969 --> 02:24:18,271
I ALONG WITH MY SON'S 

3056
02:24:18,271 --> 02:24:19,373
OCCUPATIONAL THERAPIST FOR 10 

3057
02:24:19,373 --> 02:24:23,710
YEARS NOW HAVE BEEN ONCE A YEAR 

3058
02:24:23,710 --> 02:24:26,913
GOING TO OUR LOCAL COLLEGE WITH 

3059
02:24:26,913 --> 02:24:27,848
AN OCCUPATIONAL TRAINING PROGRAM

3060
02:24:27,848 --> 02:24:30,150
AND GIVING A PRESENCE AND I WANT

3061
02:24:30,150 --> 02:24:30,851
TO ENCOURAGE EVERYONE WHO LIVES 

3062
02:24:30,851 --> 02:24:37,190
IN A CITY THAT HAS A COLLEGE OR 

3063
02:24:37,190 --> 02:24:38,358
UNIVERSITY OR MAYBE HOSPITAL 

3064
02:24:38,358 --> 02:24:39,860
WITH A TRAINING PROGRAM, YOU 

3065
02:24:39,860 --> 02:24:42,162
DON'T NEED TO BE AN EXPERT.

3066
02:24:42,162 --> 02:24:44,231
IN FACT JUST BEING A PATIENT AND

3067
02:24:44,231 --> 02:24:45,332
SPEAKING ABOUT YOUR PERSONAL 

3068
02:24:45,332 --> 02:24:46,600
EXPERIENCE CAN BE PERHAPS THE 

3069
02:24:46,600 --> 02:24:50,737
MOST MOVING AND MOTIVATING THING

3070
02:24:50,737 --> 02:24:53,206
TO ENCOURAGE TO GO INTO THIS 

3071
02:24:53,206 --> 02:24:54,908
FIELD AS A SPECIALTY WHEN THEY 

3072
02:24:54,908 --> 02:24:56,376
REALIZE HOW MUCH OF A DIFFERENCE

3073
02:24:56,376 --> 02:24:57,244
THEY COULD MAKE IN THE LIVES OF 

3074
02:24:57,244 --> 02:24:57,978
THESE PATIENTS.

3075
02:24:57,978 --> 02:25:01,214
SO I JUST WANTED TO ADD THAT TO 

3076
02:25:01,214 --> 02:25:03,784
THE DISCUSSION.

3077
02:25:03,784 --> 02:25:04,951
>> GUENTER -- 

3078
02:25:04,951 --> 02:25:07,053
>> AND I WAS UNABLE TO
RAISE MY 

3079
02:25:07,053 --> 02:25:13,193
HAND OR HAVE TO DO IT 

3080
02:25:13,193 --> 02:25:15,695
PHYSICALLY.

3081
02:25:15,695 --> 02:25:18,932
I ALSO WANT TO SHIFT TO THE 

3082
02:25:18,932 --> 02:25:20,934
UNREASONABLE CONDITIONS OUR 

3083
02:25:20,934 --> 02:25:22,869
THERAPIST FACING IN THE HOSPITAL

3084
02:25:22,869 --> 02:25:23,270
SETTING.

3085
02:25:23,270 --> 02:25:24,671
I AM PRIVATE PRACTICE YOU COULD 

3086
02:25:24,671 --> 02:25:26,440
BE MORE FLEXIBLE WITH YOUR TIME 

3087
02:25:26,440 --> 02:25:32,512
SPENT ON PATIENTS BUT I FIND 

3088
02:25:32,512 --> 02:25:34,648
THAT THE ORGANIZATIONS THE NLM 

3089
02:25:34,648 --> 02:25:38,084
AND ALL THE ORGANIZATIONS I 

3090
02:25:38,084 --> 02:25:41,955
WOULD WISH THAT THEY WOULD 

3091
02:25:41,955 --> 02:25:45,592
ADVOCATE A LITTLE BIT MORE FOR 

3092
02:25:45,592 --> 02:25:48,395
BETTER WORKING CONDITIONS AND 

3093
02:25:48,395 --> 02:25:50,997
DEFINE WHAT AN ADEQUATE CDT 

3094
02:25:50,997 --> 02:25:52,999
TREATMENT IS LIKE BECAUSE OUR 

3095
02:25:52,999 --> 02:25:57,204
PATIENTS COME WITH A LOT OF 

3096
02:25:57,204 --> 02:25:58,972
DIFFERENT ISSUES AND PROBLEMS 

3097
02:25:58,972 --> 02:26:00,207
BEYOND THE LYMPHEDEMA.

3098
02:26:00,207 --> 02:26:01,241
WE NEED TO BE A LITTLE BIT MORE 

3099
02:26:01,241 --> 02:26:05,045
TAKING A STANCE OF WHAT A GOOD 

3100
02:26:05,045 --> 02:26:08,548
CDT TREATMENT SHOULD BE LIKE IN 

3101
02:26:08,548 --> 02:26:10,550
TERMS OF THE TIME OF THE 

3102
02:26:10,550 --> 02:26:11,351
INDIVIDUAL TREATMENT AND 

3103
02:26:11,351 --> 02:26:12,552
FREQUENCY OF THE TREATMENT.

3104
02:26:12,552 --> 02:26:19,860
I KNOW WE JUST PUBLISHED A PAPER

3105
02:26:19,860 --> 02:26:21,761
THAT SPELLS OUT GOOD CDT BUT WE 

3106
02:26:21,761 --> 02:26:26,500
NEED TO DO MORE TO ADVOCATE SO 

3107
02:26:26,500 --> 02:26:28,368
THE LYMPHEDEMA THERAPISTS DON'T 

3108
02:26:28,368 --> 02:26:31,071
FEEL SO UTTERLY PRESSURED IN 

3109
02:26:31,071 --> 02:26:32,439
PROVIDING TREATMENT IN THE 

3110
02:26:32,439 --> 02:26:34,007
SHORTEST PERIOD OF TIME WHICH 

3111
02:26:34,007 --> 02:26:38,278
IS -- WE'RE NOT MIRACLE WORKERS.

3112
02:26:38,278 --> 02:26:40,313
CDT TAKES TIME AND PAYS DIVIDE 

3113
02:26:40,313 --> 02:26:43,183
BUT WE NEED TO ADVOCATE FOR THAT

3114
02:26:43,183 --> 02:26:43,617
IF THAT MAKES SENSE.

3115
02:26:43,617 --> 02:26:46,019
>> THANK YOU, GUENTER.

3116
02:26:46,019 --> 02:26:48,788
I'D LIKE TO RECOGNITION ALEXA A 

3117
02:26:48,788 --> 02:26:49,589
COMMISSION MEMBER TRYING TO 

3118
02:26:49,589 --> 02:26:52,459
RAISE HER HAND.

3119
02:26:52,459 --> 02:26:53,393
>> THANK YOU.

3120
02:26:53,393 --> 02:26:55,028
I'M A PRIMARY LYMPHEDEMA PATIENT

3121
02:26:55,028 --> 02:26:56,363
AND SERVE ON THE COMMISSION AND 

3122
02:26:56,363 --> 02:26:59,399
ONE OF MY ROLES IS IN THE 

3123
02:26:59,399 --> 02:27:00,467
PATIENT TOOLS COMMITTEE.

3124
02:27:00,467 --> 02:27:01,301
SOMETHING WE'VE BEEN GRAPPLING 

3125
02:27:01,301 --> 02:27:06,740
WITH IS THE IDEA OF HOW DO WE 

3126
02:27:06,740 --> 02:27:07,407
REACH THOSE IN THE LYMPHATIC 

3127
02:27:07,407 --> 02:27:09,209
DISEASE COMMUNITY WHO DON'T KNOW

3128
02:27:09,209 --> 02:27:19,719
THEY'RE PART OF IT YES DOVING 

3129
02:27:21,254 --> 02:27:22,589
 -- DOVETAILING FROM DIAGNOSIS 

3130
02:27:22,589 --> 02:27:25,191
FROM A BILLBOARD.

3131
02:27:25,191 --> 02:27:30,664
WHAT HAVE BEEN EFFECTIVE 

3132
02:27:30,664 --> 02:27:35,035
CAMPAIGNS TO REACH PEOPLE AND 

3133
02:27:35,035 --> 02:27:36,836
BROUGHT THEM INTO THE FOLD A 

3134
02:27:36,836 --> 02:27:37,938
LITTLE BIT.

3135
02:27:37,938 --> 02:27:39,506
>> WE'LL HAVE ANSWERS AND
THEN 

3136
02:27:39,506 --> 02:27:49,983
GET TO WRAP UP OUR SESSION.

3137
02:28:00,894 --> 02:28:02,929
>> HERE EN NEW YORK WE'RE
ALL 

3138
02:28:02,929 --> 02:28:04,598
LOOKING WHAT TO DO TO SELL OUT 

3139
02:28:04,598 --> 02:28:09,102
THE HOUSE AND WHAT YOU FOUND WAS

3140
02:28:09,102 --> 02:28:11,004
EVERYTHING SELLS A FEW AND YOU 

3141
02:28:11,004 --> 02:28:12,839
DO EVERYTHING YOU CAN THINK OF 

3142
02:28:12,839 --> 02:28:15,108
AND IT'S NOT JUST ONE APPROACH 

3143
02:28:15,108 --> 02:28:16,776
BUT ONE OF THE THINGS WE'RE 

3144
02:28:16,776 --> 02:28:19,245
DOING WE'RE SUCCESSFUL IN 

3145
02:28:19,245 --> 02:28:22,882
GETTING A CANCER-RELATED 

3146
02:28:22,882 --> 02:28:25,218
LYMPHEDEMA AND HAD KATHY BATES 

3147
02:28:25,218 --> 02:28:28,021
AND STEVE GUTENBERG TO DO THE 

3148
02:28:28,021 --> 02:28:31,524
VIDEO ANNOUNCEMENTS AND WE GOT 

3149
02:28:31,524 --> 02:28:34,027
$14 MILLION IN FREE ADVERTISING 

3150
02:28:34,027 --> 02:28:39,132
AND HAVE OVER FIVE PEOPLE A DAY 

3151
02:28:39,132 --> 02:28:41,534
VISITING THE WEBSITE.

3152
02:28:41,534 --> 02:28:43,903
THAT'S ONE SEGMENT OF THE 

3153
02:28:43,903 --> 02:28:50,143
POPULATION AND ONE APPROACH IS 

3154
02:28:50,143 --> 02:29:00,687
MONEY AND ACCESS AND ACCESSING 

3155
02:29:01,621 --> 02:29:03,757
THE INFORMATION AND THERE'S AN 

3156
02:29:03,757 --> 02:29:05,191
ABUNDANCE OF PATIENT RESOURCE 

3157
02:29:05,191 --> 02:29:07,060
INFORMATION ON ITS WEBSITE.

3158
02:29:07,060 --> 02:29:10,530
ONE OBSTACLE YOU HAVE TO FACE IS

3159
02:29:10,530 --> 02:29:11,231
THE FACT IS WE'RE ALSO 

3160
02:29:11,231 --> 02:29:12,799
INTERESTED IN THE FIELD.

3161
02:29:12,799 --> 02:29:14,234
IT'S HARD TO SEE WHY IN ELSE 

3162
02:29:14,234 --> 02:29:17,504
WOULD NOT BE.

3163
02:29:17,504 --> 02:29:19,172
AND I REMEMBER HAVING A 

3164
02:29:19,172 --> 02:29:20,674
CONVERSATION WITH WOULD STOPPED 

3165
02:29:20,674 --> 02:29:22,142
ME AND SAID I KNOW WHAT 

3166
02:29:22,142 --> 02:29:23,476
LYMPHEDEMA IS.

3167
02:29:23,476 --> 02:29:26,513
HOW DO I MAKE MONEY AT IT?

3168
02:29:26,513 --> 02:29:28,048
WHAT APPOINTMENT.

3169
02:29:28,048 --> 02:29:31,184
I SAY YOU HAVE LYMPHEDEMA FIND A

3170
02:29:31,184 --> 02:29:32,085
THERAPIST.

3171
02:29:32,085 --> 02:29:33,653
HOW DO I MAKE MORE MONEY AND THE

3172
02:29:33,653 --> 02:29:36,222
OTHER THING WE FOUND WITH PEOPLE

3173
02:29:36,222 --> 02:29:37,190
WHO KNOW ABOUT LYMPHEDEMA IS THE

3174
02:29:37,190 --> 02:29:39,592
PATIENTS WHO CALL UP AND SAY MY 

3175
02:29:39,592 --> 02:29:41,361
SURGEON SAID YES, YOU HAVE 

3176
02:29:41,361 --> 02:29:41,661
LYMPHEDEMA.

3177
02:29:41,661 --> 02:29:46,966
FIND A THERAPIST IT WON'T KILL 

3178
02:29:46,966 --> 02:29:47,834
YOU.

3179
02:29:47,834 --> 02:29:58,111
DON'T COMPLAIN.

3180
02:29:59,012 --> 02:30:00,480
EITHER IT'S NOT IMPORTANT OR I'M

3181
02:30:00,480 --> 02:30:01,014
NOT GOD.

3182
02:30:01,014 --> 02:30:02,415
LET ME CHOOSE.

3183
02:30:02,415 --> 02:30:05,218
A LOT OF TIMES THE DECISION IS 

3184
02:30:05,218 --> 02:30:06,953
IT'S NOT PERSON.

3185
02:30:06,953 --> 02:30:09,189
AND PEOPLE LEAVE PSYCHOLOGICALLY

3186
02:30:09,189 --> 02:30:16,930
BRUFD AND THOSE ARE TWO RELATS 

3187
02:30:16,930 --> 02:30:20,867
AND YOU CAN'T BE A GOOD DOCTOR 

3188
02:30:20,867 --> 02:30:22,635
AND KNOW OF SOMETHING THAT 

3189
02:30:22,635 --> 02:30:24,571
TREATS SOMETHING AND WHO IS 

3190
02:30:24,571 --> 02:30:24,971
INTERESTED?

3191
02:30:24,971 --> 02:30:28,108
 SURGEONS AND THEY FEEL LIKE 

3192
02:30:28,108 --> 02:30:33,179
THEY CAN DO SOMETHING.

3193
02:30:33,179 --> 02:30:35,281
MOST DOCTORS FEEL THEY CAN'T DO 

3194
02:30:35,281 --> 02:30:37,016
ANYTHING AND MEDICAL SCHOOLS 

3195
02:30:37,016 --> 02:30:37,784
DON'T TEACH IT BECAUSE THERE'S 

3196
02:30:37,784 --> 02:30:41,454
NOT A FINANCIAL INCENTIVE OR 

3197
02:30:41,454 --> 02:30:43,490
DOCTORS CAN DO ABOUT THE DISEASE

3198
02:30:43,490 --> 02:30:46,659
OTHER THAN SAY FIND A THERAPIST.

3199
02:30:46,659 --> 02:30:48,628
>> THANK YOU, BILL.

3200
02:30:48,628 --> 02:30:50,230
THAT'S INSIGHTFUL.

3201
02:30:50,230 --> 02:30:51,297
JONATHAN, YOU GET THE LAST WORD 

3202
02:30:51,297 --> 02:30:55,268
FROM THE ATTENDEE GROUP AND THEN

3203
02:30:55,268 --> 02:30:56,136
WE'LL WRAP UP.

3204
02:30:56,136 --> 02:30:58,772
>> THESE ARE GREAT IDEAS
TO 

3205
02:30:58,772 --> 02:31:07,814
REACH FOLKS AND WHAT YOU SHARED 

3206
02:31:07,814 --> 02:31:08,948
WAS INSPIRING AND TRYING 

3207
02:31:08,948 --> 02:31:10,049
EVERYTHING AND ANYTHING HIT 

3208
02:31:10,049 --> 02:31:10,917
HOME.

3209
02:31:10,917 --> 02:31:12,752
I WOULD ENCOURAGE FOLKS TO 

3210
02:31:12,752 --> 02:31:15,421
RESIST THE TEMPTATION TO SPEAK 

3211
02:31:15,421 --> 02:31:22,629
OR PREACH TO THE CHOIR.

3212
02:31:22,629 --> 02:31:24,597
WE TALKED ABOUT FOLKS AND 

3213
02:31:24,597 --> 02:31:27,000
GREATER COLLABORATION IN THE 

3214
02:31:27,000 --> 02:31:27,901
ADVOCATES AND RESEARCH 

3215
02:31:27,901 --> 02:31:29,102
ORGANIZATIONS RAISING AWARENESS 

3216
02:31:29,102 --> 02:31:33,206
ABOUT LYMPHEDEMA AND LYMPHATIC 

3217
02:31:33,206 --> 02:31:35,408
DISORDERS IS IMPORTANT.

3218
02:31:35,408 --> 02:31:37,110
I THINK A LOT OF THE NETWORKS 

3219
02:31:37,110 --> 02:31:37,744
WE'RE REACHING ALREADY KNOW 

3220
02:31:37,744 --> 02:31:39,846
ABOUT THESE CONDITIONS.

3221
02:31:39,846 --> 02:31:44,884
I THINK THINKING CREATIVELY 

3222
02:31:44,884 --> 02:31:49,189
AROUND COMORBID DISEASE ADVOCACY

3223
02:31:49,189 --> 02:31:50,924
ORGANIZATIONS.

3224
02:31:50,924 --> 02:31:53,893
IN LYMPHEDEMA WE WORKED WITH 

3225
02:31:53,893 --> 02:31:59,399
FOUNDATIONS TO GET THE WORD OUT 

3226
02:31:59,399 --> 02:32:01,334
IN THEIR COMMUNITY AND HAVE 

3227
02:32:01,334 --> 02:32:02,202
HYPERMORBIDITY SPECTRUM 

3228
02:32:02,202 --> 02:32:03,136
DISORDER.

3229
02:32:03,136 --> 02:32:04,003
THINKING CREATIVE HOW CAN YOU 

3230
02:32:04,003 --> 02:32:08,007
REACH AUDIENCES LIKELY TO 

3231
02:32:08,007 --> 02:32:14,981
RESONATE WITH THE MESSAGE AND 

3232
02:32:14,981 --> 02:32:16,449
IT'S HARD TO BUILD THE 

3233
02:32:16,449 --> 02:32:17,884
COLLABORATION BUT IT PAYS 

3234
02:32:17,884 --> 02:32:18,117
DIVIDES.

3235
02:32:18,117 --> 02:32:19,319
>> THANK YOU, JONATHAN.

3236
02:32:19,319 --> 02:32:20,854
>> I'D LIKE TO CONCLUDE BY

3237
02:32:20,854 --> 02:32:22,889
SAYING I WANT TO THANK EVERYONE 

3238
02:32:22,889 --> 02:32:25,592
FOR THE PARTICIPATION THIS 

3239
02:32:25,592 --> 02:32:25,825
MORNING.

3240
02:32:25,825 --> 02:32:28,061
THE EYE OPENING NEGATIVE SIDE OF

3241
02:32:28,061 --> 02:32:29,929
THE STORY AND THE INSPIRING 

3242
02:32:29,929 --> 02:32:31,097
POSITIVE SIDE OF THE STORY.

3243
02:32:31,097 --> 02:32:34,500
I WOULD LIKE TO FINISH WITH A 

3244
02:32:34,500 --> 02:32:38,538
LITTLE WORD OF HOPE.

3245
02:32:38,538 --> 02:32:43,076
EARLIER YOU HEARD THE CREATION 

3246
02:32:43,076 --> 02:32:48,214
OF ARPA-H THAT HAS A LYMPHATIC 

3247
02:32:48,214 --> 02:32:53,920
COMPONENT AND KEN STEELE THE -- 

3248
02:32:53,920 --> 02:32:55,922
KIM STEELE THE MANAGER OF THE 

3249
02:32:55,922 --> 02:32:56,789
PROGRAM WASN'T ABLE TO ATTEND 

3250
02:32:56,789 --> 02:32:58,992
BUT HAVE ENCOURAGING NEWS TO 

3251
02:32:58,992 --> 02:33:00,894
PASS ON TO THE PARTICIPANTS AND 

3252
02:33:00,894 --> 02:33:01,194
WEBCAST.

3253
02:33:01,194 --> 02:33:07,267
THERE'S TWO FORMAL UNDER ARPA-H 

3254
02:33:07,267 --> 02:33:12,572
AR PA LIGHT AND GLIDE AND 

3255
02:33:12,572 --> 02:33:13,406
THERAPEUTIC AND DIAGNOSTIC 

3256
02:33:13,406 --> 02:33:14,140
DON'TS WITH LYMPHATIC DISEASE 

3257
02:33:14,140 --> 02:33:16,075
AND THERE'S A PARALLEL PROGRAM 

3258
02:33:16,075 --> 02:33:17,710
CALLED SPRINT FOR WOMEN'S HEALTH

3259
02:33:17,710 --> 02:33:22,048
AND ONE OF THE TOPICS WAS 

3260
02:33:22,048 --> 02:33:29,188
WOMEN'S BRAIN HEALTH VIA 

3261
02:33:29,188 --> 02:33:31,624
LYMPHATIC TARGETING AND SIX 

3262
02:33:31,624 --> 02:33:35,261
TEAMS HAVE RECEIVED AWARDS FOR 

3263
02:33:35,261 --> 02:33:40,633
NEUROLOGIC CONDITIONS IN WOMEN 

3264
02:33:40,633 --> 02:33:43,169
WITH MIGRAINES AND DEMENTIA AND 

3265
02:33:43,169 --> 02:33:44,904
OTHER NEURODEGENERATIVE 

3266
02:33:44,904 --> 02:33:45,204
DISEASES.

3267
02:33:45,204 --> 02:33:47,273
THREE ENTITIES RECEIVED AWARDS 

3268
02:33:47,273 --> 02:33:49,609
FOR DIAGNOSTIC TECHNOLOGIES AND 

3269
02:33:49,609 --> 02:33:52,045
THREE FOR THERAPEUTIC 

3270
02:33:52,045 --> 02:33:53,212
TECHNOLOGIES.

3271
02:33:53,212 --> 02:33:57,183
THERE'S ALSO AN ARPA-H SMALL 

3272
02:33:57,183 --> 02:33:58,051
BUSINESS OPPORTUNITY FOR WHICH 

3273
02:33:58,051 --> 02:34:02,221
TWO SOLICITATIONS HAVE BEEN 

3274
02:34:02,221 --> 02:34:03,957
POSTED AND THERE ARE COMPANIES 

3275
02:34:03,957 --> 02:34:05,925
DEVELOPING ORGAN ON A CHIP 

3276
02:34:05,925 --> 02:34:08,461
TECHNOLOGY AND AN AMBULATORY 

3277
02:34:08,461 --> 02:34:09,762
EDEMA MONITOR SOLICITATION 

3278
02:34:09,762 --> 02:34:12,098
POSTED AND CURRENTLY IN SOURCE 

3279
02:34:12,098 --> 02:34:13,466
SELECTION.

3280
02:34:13,466 --> 02:34:15,802
SO WE CAN CERTAINLY HOPE ANSWERS

3281
02:34:15,802 --> 02:34:17,370
FOR TOMORROW.

3282
02:34:17,370 --> 02:34:19,272
WE WANT TO DEAL IN THE WORLD OF 

3283
02:34:19,272 --> 02:34:20,473
TODAY AND THANK YOU FOR LIVING 

3284
02:34:20,473 --> 02:34:22,375
US ALL THE WONDERFUL SUGGESTIONS

3285
02:34:22,375 --> 02:34:31,184
ON HOW WE CAN TRY TO REFURBISH 

3286
02:34:31,184 --> 02:34:32,719
OUR REPORT TO THE ADVISORY 

3287
02:34:32,719 --> 02:34:35,621
COUNCIL SO EVERYONE UNDERSTANDS 

3288
02:34:35,621 --> 02:34:37,957
THE NATURE OF THE PROBLEM.

3289
02:34:37,957 --> 02:34:40,393
I'D LIKE TO TURN IT BACK TO HAVE

3290
02:34:40,393 --> 02:34:41,661
SELEN TO CLOSE UP.

3291
02:34:41,661 --> 02:34:49,068
>> THANK YOU AS WE CLOSE
THE 

3292
02:34:49,068 --> 02:34:51,204
FORUM I'D LIKE TO EXPRESS OUR 

3293
02:34:51,204 --> 02:34:52,405
GRATITUDE FOR THOSE WHO JOINED 

3294
02:34:52,405 --> 02:34:55,575
AS PANELISTS AND LISTENERS.

3295
02:34:55,575 --> 02:34:59,212
THANK YOU TO ALL THE PATIENT 

3296
02:34:59,212 --> 02:35:00,580
ORGANIZERS AND REPRESENTATIVES 

3297
02:35:00,580 --> 02:35:07,720
WHO COURAGEOUSLY SHARED THEIR 

3298
02:35:07,720 --> 02:35:08,287
EXPERIENCES.

3299
02:35:08,287 --> 02:35:09,555
IT WAS HARD NOT TO CRY.

3300
02:35:09,555 --> 02:35:12,759
IT WAS VERY POWERFUL.

3301
02:35:12,759 --> 02:35:18,064
I HOPE WE ALL HOPE IT WILL HELP 

3302
02:35:18,064 --> 02:35:18,898
ENHANCE OUR UNDERSTANDING OF 

3303
02:35:18,898 --> 02:35:19,766
LYMPHATIC DISEASE AND HEALTH AND

3304
02:35:19,766 --> 02:35:21,334
CARE OF THOSE EFFECTS.

3305
02:35:21,334 --> 02:35:27,673
WE'RE ALSO DEEPLY GRATEFUL TO 

3306
02:35:27,673 --> 02:35:32,345
ALL THE MEMBERS AND CO-CHAIRS 

3307
02:35:32,345 --> 02:35:37,250
AND THE THOUGHT PROVOKING 

3308
02:35:37,250 --> 02:35:39,085
DISCUSSIONS AND ONE REMINDER 

3309
02:35:39,085 --> 02:35:40,820
THIS IMPORTANT DISCUSSION IS 

3310
02:35:40,820 --> 02:35:42,722
RECORDED AND WILL BE AVAILABLE 

3311
02:35:42,722 --> 02:35:45,058
IN A COUPLE OF DAYS ON THE SAME 

3312
02:35:45,058 --> 02:35:55,234
LINK ON THE NIH VIDEOCAST AND 

3313
02:35:55,234 --> 02:35:58,171
ALSO IN THE WEBSITE AND STORES 

3314
02:35:58,171 --> 02:35:59,906
PREVIOUS QUARTERLY MEETINGS AS 

3315
02:35:59,906 --> 02:36:00,106
WELL.

3316
02:36:00,106 --> 02:36:01,974
I WANT TO ACKNOWLEDGE THE 

3317
02:36:01,974 --> 02:36:05,211
OUTSTANDING SUPPORT BY THE NHLBI

3318
02:36:05,211 --> 02:36:07,747
TEAM AND THE LEADERSHIP, 

3319
02:36:07,747 --> 02:36:09,982
EXTRAMURAL PROGRAM STAFF AND THE

3320
02:36:09,982 --> 02:36:11,617
WORKING GROUP AND COORDINATION 

3321
02:36:11,617 --> 02:36:14,854
COMMITTEE AND THE NIH VIDEOCAST 

3322
02:36:14,854 --> 02:36:17,056
TEAM AND NHLBI WORKSHOP SUPPORT 

3323
02:36:17,056 --> 02:36:17,256
TEAM.

3324
02:36:17,256 --> 02:36:21,394
THEIR EFFORTS HAVE BEEN 

3325
02:36:21,394 --> 02:36:23,396
INSTRUMENTAL WITH THE MEETINGS.

3326
02:36:23,396 --> 02:36:33,706
THANK YOU AND WITH