1 00:00:10,160 --> 00:00:13,219 Welcome to Boundless Bee, the hemophilia bee podcast. 2 00:00:13,644 --> 00:00:15,724 The podcast standing with you from a family 3 00:00:15,724 --> 00:00:18,464 like yours, presented by the Coalition for Hemophilia 4 00:00:18,605 --> 00:00:21,344 b and in partnership with Balancing Life's Issues. 5 00:00:21,884 --> 00:00:24,044 This year marks the thirty fifth anniversary of 6 00:00:24,044 --> 00:00:27,310 the Coalition for Hemophilia b, a milestone that 7 00:00:27,310 --> 00:00:29,570 not only celebrates decades of advocacy, 8 00:00:29,949 --> 00:00:31,250 education, and support, 9 00:00:31,550 --> 00:00:33,390 but honors the people who have built that 10 00:00:33,390 --> 00:00:35,630 community from the ground up. And I witnessed 11 00:00:35,630 --> 00:00:36,690 that community firsthand. 12 00:00:37,229 --> 00:00:38,909 From the moment I arrived at the Renaissance 13 00:00:38,909 --> 00:00:40,690 Resort in Orlando for the symposium, 14 00:00:41,145 --> 00:00:42,585 it was the little things that left the 15 00:00:42,585 --> 00:00:43,405 biggest impression. 16 00:00:43,864 --> 00:00:45,884 A child running to hug a familiar face, 17 00:00:45,945 --> 00:00:48,104 parents chatting like old friends around a breakfast 18 00:00:48,104 --> 00:00:51,225 table, and laughter echoing through the hallways. Everyone 19 00:00:51,225 --> 00:00:53,144 was picking up right where they left off. 20 00:00:53,144 --> 00:00:55,064 My goal was to capture those moments and 21 00:00:55,064 --> 00:00:58,149 the conversations behind them. This episode brings together 22 00:00:58,149 --> 00:01:00,390 voices from all corners of the community, new 23 00:01:00,390 --> 00:01:03,829 families, seasoned parents, teens finding their place, and 24 00:01:03,829 --> 00:01:05,829 the leaders and legacy builders who have guided 25 00:01:05,829 --> 00:01:07,670 the way. At the heart of every story 26 00:01:07,670 --> 00:01:09,130 though, the same foundation, 27 00:01:09,590 --> 00:01:10,090 education, 28 00:01:10,390 --> 00:01:10,890 connection, 29 00:01:11,204 --> 00:01:13,145 and the belief that we are all stronger 30 00:01:13,204 --> 00:01:13,704 together. 31 00:01:14,005 --> 00:01:16,484 So join me today as we explore the 32 00:01:16,484 --> 00:01:19,125 extraordinary impact of thirty five years, the annual 33 00:01:19,125 --> 00:01:22,185 symposium, and how early connection can change everything. 34 00:01:33,019 --> 00:01:35,579 For many families, the journey with hemophilia b 35 00:01:35,579 --> 00:01:38,299 begins with confusion, fear, and a desperate need 36 00:01:38,299 --> 00:01:39,040 for answers. 37 00:01:39,435 --> 00:01:41,834 But through the Coalition for Hemophilia b, they 38 00:01:41,834 --> 00:01:43,055 find not just education, 39 00:01:43,435 --> 00:01:44,575 they find one another. 40 00:01:44,875 --> 00:01:46,555 Just like I found Erica and her family 41 00:01:46,555 --> 00:01:48,075 in line for a coffee. This is his 42 00:01:48,075 --> 00:01:50,655 sister. Zaylee. Hi, Zaylee. And you are? 43 00:01:51,209 --> 00:01:53,689 Liam. Say Liam. And, I guess tell us 44 00:01:53,689 --> 00:01:55,849 about your connection to the hemophilia b community. 45 00:01:55,849 --> 00:01:57,069 Yep. So I have hemophilia, 46 00:01:58,090 --> 00:02:00,829 b. I have mild, and Liam has hemophilia 47 00:02:01,049 --> 00:02:02,729 severe. And for those of us who are 48 00:02:02,729 --> 00:02:05,129 listening, Liam is smashing potato chips in a 49 00:02:05,129 --> 00:02:06,189 Mickey Mouse shirt. 50 00:02:06,655 --> 00:02:08,354 And, and how about Zay? 51 00:02:08,655 --> 00:02:11,055 I don't have have anything. I still have 52 00:02:11,055 --> 00:02:13,534 to get tested. Okay. What's it like being 53 00:02:13,534 --> 00:02:15,235 a sibling of someone who has hemophilia? 54 00:02:15,534 --> 00:02:17,455 It's kind of crazy. It's kind of crazy 55 00:02:17,455 --> 00:02:18,275 in what way? 56 00:02:19,215 --> 00:02:21,000 You you worry about your brother a lot? 57 00:02:21,540 --> 00:02:23,800 Yeah. When he's getting his infusions, 58 00:02:24,900 --> 00:02:28,099 I make him not cry. That's great. That's 59 00:02:28,099 --> 00:02:28,599 wonderful. 60 00:02:29,060 --> 00:02:31,060 Older sister behavior. And how about you as 61 00:02:31,060 --> 00:02:32,740 a caretaker of someone? Well, you have it 62 00:02:32,740 --> 00:02:34,974 yourself. What's that like? Well, well, I didn't 63 00:02:34,974 --> 00:02:36,574 know about it until I was 31 years 64 00:02:36,574 --> 00:02:38,735 old. So when he was born, I found 65 00:02:38,735 --> 00:02:40,754 out I had it after I got tested. 66 00:02:40,814 --> 00:02:42,814 This story is so familiar to so many 67 00:02:42,814 --> 00:02:43,314 families. 68 00:02:43,935 --> 00:02:46,094 Diagnosis coming after the birth of a child 69 00:02:46,094 --> 00:02:48,254 and coming to the realization that you or 70 00:02:48,254 --> 00:02:50,114 your child have a rare bleeding disorder 71 00:02:50,490 --> 00:02:52,250 and a sibling who has so many questions 72 00:02:52,250 --> 00:02:54,250 and only just wants to help. So for 73 00:02:54,250 --> 00:02:56,009 Erica and her family, it was about finding 74 00:02:56,009 --> 00:02:58,250 the community that could help them navigate this 75 00:02:58,250 --> 00:03:00,169 new version of life. We've been here every 76 00:03:00,169 --> 00:03:01,949 year of his life, meet wonderful 77 00:03:02,250 --> 00:03:05,064 people Yeah. Every year, get connected with a 78 00:03:05,064 --> 00:03:07,305 lot of families, look forward to meeting them 79 00:03:07,305 --> 00:03:09,384 every year back here, learn a lot, new 80 00:03:09,384 --> 00:03:11,324 medicines coming out, current medicines, 81 00:03:12,185 --> 00:03:13,645 things to do for infusions, 82 00:03:14,344 --> 00:03:15,724 the future of hemophilia, 83 00:03:16,104 --> 00:03:18,185 and so much more. Then there are patients 84 00:03:18,185 --> 00:03:20,430 like Nathan, who have been diagnosed and part 85 00:03:20,430 --> 00:03:22,590 of this community for over twenty years. And 86 00:03:22,590 --> 00:03:24,830 for him, it's all about support. Yeah. I 87 00:03:24,830 --> 00:03:26,349 mean, there's a lot of support within the 88 00:03:26,349 --> 00:03:28,510 community. We really help each other out, especially 89 00:03:28,510 --> 00:03:30,349 as new families. But when Nathan met his 90 00:03:30,349 --> 00:03:32,510 now wife Angelina and they decided to bring 91 00:03:32,510 --> 00:03:35,444 Amelia and Eleanor into their lives, Angelina was 92 00:03:35,444 --> 00:03:37,865 nervous as she had no idea what hemophilia 93 00:03:38,004 --> 00:03:39,605 b was and how that would affect their 94 00:03:39,605 --> 00:03:41,605 family planning. And it was the connections through 95 00:03:41,605 --> 00:03:43,365 the coalition that gave the two of them 96 00:03:43,365 --> 00:03:45,365 the guidance they needed to move forward with 97 00:03:45,365 --> 00:03:45,865 confidence. 98 00:03:46,165 --> 00:03:47,145 Having our girls, 99 00:03:47,444 --> 00:03:50,430 they are carriers, but it's been nice, like, 100 00:03:50,509 --> 00:03:52,269 to kind of get, like, different point of 101 00:03:52,269 --> 00:03:54,349 views and everything like that coming from, I 102 00:03:54,349 --> 00:03:56,750 didn't didn't know what this was before marrying 103 00:03:56,750 --> 00:03:57,729 him or, you know, 104 00:03:58,189 --> 00:04:00,509 being with him. So it's just been very 105 00:04:00,509 --> 00:04:03,069 informative. And as these moments create lifelong memories 106 00:04:03,069 --> 00:04:05,569 for families, it all goes beyond your stereotypical 107 00:04:05,870 --> 00:04:07,055 vacation experience. 108 00:04:07,754 --> 00:04:09,675 It's a reminder that the days of kids 109 00:04:09,675 --> 00:04:11,675 running around the hallways and pads are long 110 00:04:11,675 --> 00:04:12,175 gone 111 00:04:12,555 --> 00:04:14,655 because families have committed to education, 112 00:04:14,955 --> 00:04:16,254 which has led to advocacy, 113 00:04:16,795 --> 00:04:19,194 which has led to breakthroughs in research, science, 114 00:04:19,194 --> 00:04:19,855 and medicine. 115 00:04:20,720 --> 00:04:23,360 And as treatments for hemophilia b continue to 116 00:04:23,360 --> 00:04:23,860 evolve, 117 00:04:24,319 --> 00:04:27,439 education becomes a critical tool in transforming fear 118 00:04:27,439 --> 00:04:28,339 into empowerment. 119 00:04:28,720 --> 00:04:30,819 From new medications to gene therapy, 120 00:04:31,360 --> 00:04:34,319 informed families are better equipped to advocate for 121 00:04:34,319 --> 00:04:35,884 themselves and each other. 122 00:04:38,345 --> 00:04:39,644 As treatments for hemophilia 123 00:04:39,944 --> 00:04:42,504 b continue to evolve, education remains one of 124 00:04:42,504 --> 00:04:44,985 our community's most powerful tools. But it's important 125 00:04:44,985 --> 00:04:47,064 to remember no two journeys are the same. 126 00:04:47,064 --> 00:04:48,745 And for those who share the common thread 127 00:04:48,745 --> 00:04:51,120 of living with hemophilia b, they're each at 128 00:04:51,120 --> 00:04:52,100 a different stage. 129 00:04:52,479 --> 00:04:53,699 Some are newly diagnosed. 130 00:04:54,000 --> 00:04:55,939 Others are learning to parent through uncertainty. 131 00:04:56,479 --> 00:04:58,319 And then there are teens like Landon growing 132 00:04:58,319 --> 00:05:00,560 into themselves, learning how to manage their condition 133 00:05:00,560 --> 00:05:03,039 with confidence. Breakout sessions at the symposium gave 134 00:05:03,039 --> 00:05:05,564 families across all stages a chance to explore 135 00:05:05,564 --> 00:05:08,764 the latest treatment advances, ask questions, and discover 136 00:05:08,764 --> 00:05:10,865 what might be possible for their unique paths. 137 00:05:11,004 --> 00:05:12,845 And for Landon, that hope comes with a 138 00:05:12,845 --> 00:05:15,165 growing sense of self assurance. I'm Landon. I'm 139 00:05:15,165 --> 00:05:16,625 from Northwestern Pennsylvania. 140 00:05:17,245 --> 00:05:18,064 This is probably 141 00:05:18,444 --> 00:05:21,779 my tenth. Tenth? Yes. I've been here quite 142 00:05:21,779 --> 00:05:22,279 a 143 00:05:22,659 --> 00:05:24,339 bit. Very cool. So I And when it 144 00:05:24,339 --> 00:05:26,819 comes to breakthroughs in science and medicine, success 145 00:05:26,819 --> 00:05:29,399 stories like Landon's, who is 15, are showcased 146 00:05:29,620 --> 00:05:31,779 because it's afforded him the opportunity to just 147 00:05:31,779 --> 00:05:34,419 lead a normal life. And it's truly remarkable 148 00:05:34,419 --> 00:05:37,245 how Landon's attitude about living with hemophilia b 149 00:05:37,485 --> 00:05:39,485 is now so matter of fact. I mean, 150 00:05:39,485 --> 00:05:41,324 it really doesn't affect me much. Get my 151 00:05:41,324 --> 00:05:43,564 infusion once every two weeks, and then I'm 152 00:05:43,564 --> 00:05:45,725 set. Kind of roll Landon's life is completely 153 00:05:45,725 --> 00:05:47,805 different due to advances in medicine and his 154 00:05:47,805 --> 00:05:50,100 ability to take care of himself, All things 155 00:05:50,100 --> 00:05:52,020 attributed to the coalition. It's because my whole 156 00:05:52,020 --> 00:05:54,740 life I've been surrounded by the community. For 157 00:05:54,740 --> 00:05:56,500 teens and young adults like Landon, there are 158 00:05:56,500 --> 00:05:58,899 plenty of opportunities at the symposium to connect 159 00:05:58,899 --> 00:06:00,500 with those of a similar age group. But 160 00:06:00,500 --> 00:06:02,500 Landon's entry to the community was outside of 161 00:06:02,500 --> 00:06:04,894 the symposium and was actually through his music. 162 00:06:04,894 --> 00:06:06,894 The beats music program. I make sure I'm 163 00:06:06,894 --> 00:06:08,735 there. Oh, you're a musician? Oh, yeah. Me 164 00:06:08,735 --> 00:06:10,574 too. My guitar is right over there. Dude, 165 00:06:10,574 --> 00:06:12,834 awesome. And I'm there every year, 166 00:06:13,214 --> 00:06:15,295 and I, like, I'll, like, get people's, like, 167 00:06:15,295 --> 00:06:17,220 snap Chat or, like, their phone number. I'll 168 00:06:17,220 --> 00:06:19,139 make I'll make sure that I'm in contact 169 00:06:19,139 --> 00:06:20,580 with And then there are the parents like 170 00:06:20,580 --> 00:06:22,580 Jasmine who have come to listen to Landon's 171 00:06:22,580 --> 00:06:24,660 story in hopes that her own children will 172 00:06:24,660 --> 00:06:26,660 meet and learn from others to find their 173 00:06:26,660 --> 00:06:27,879 own version of resilience. 174 00:06:28,185 --> 00:06:30,105 Not all teens and young adults are so 175 00:06:30,105 --> 00:06:32,185 eager and comfortable as Landon to take this 176 00:06:32,185 --> 00:06:34,105 on. Getting to know more people and I 177 00:06:34,105 --> 00:06:36,685 didn't get it. Yeah. Getting to educate myself. 178 00:06:36,824 --> 00:06:38,425 Yeah. Because I noticed you were asking questions 179 00:06:38,425 --> 00:06:40,205 about your 13 year old and how they 180 00:06:40,470 --> 00:06:42,310 manage it, maybe they hide it or They're 181 00:06:42,550 --> 00:06:44,069 yeah. They don't really like to kinda talk 182 00:06:44,069 --> 00:06:45,750 about it when they're hurt. So I think 183 00:06:45,750 --> 00:06:46,949 it'll be nice for them to kinda meet 184 00:06:46,949 --> 00:06:48,710 other kids and kinda get that experience and 185 00:06:48,710 --> 00:06:50,310 maybe learn from them what they do. Because 186 00:06:50,310 --> 00:06:51,670 I didn't have this when I was younger. 187 00:06:51,670 --> 00:06:53,004 I found out when I was nine, but 188 00:06:53,004 --> 00:06:54,285 I didn't know there was a whole community 189 00:06:54,285 --> 00:06:56,204 out here. So I'm still kinda learning, and 190 00:06:56,204 --> 00:06:58,064 it's been really nice. And as the coalition 191 00:06:58,125 --> 00:07:00,204 brings the stories of its members together to 192 00:07:00,204 --> 00:07:02,384 create connections around science and medicine, 193 00:07:02,845 --> 00:07:04,305 it's also about myth busting. 194 00:07:04,845 --> 00:07:06,204 We live in a world where doing your 195 00:07:06,204 --> 00:07:08,285 own research can lead you down some dangerous 196 00:07:08,285 --> 00:07:10,389 roads, and that's why the coalition makes it 197 00:07:10,389 --> 00:07:12,470 a point to bring in specialists who have 198 00:07:12,470 --> 00:07:15,350 turned having hemophilia into their life's work to 199 00:07:15,350 --> 00:07:18,069 speak to the most groundbreaking treatments available like 200 00:07:18,069 --> 00:07:18,810 gene therapy. 201 00:07:19,110 --> 00:07:21,350 CJ Henson, I am the program manager for 202 00:07:21,350 --> 00:07:24,550 Ohio State's, Hemostasis Thrombosis Center. I was diagnosed 203 00:07:24,550 --> 00:07:26,444 at seven, was taken out of a bunch 204 00:07:26,444 --> 00:07:28,444 of sports that I wanted to play. I 205 00:07:28,444 --> 00:07:31,725 actually pushed away from the hemophilia community and 206 00:07:31,725 --> 00:07:33,324 pretended that I didn't have it. So I 207 00:07:33,324 --> 00:07:34,925 did all the things that we weren't supposed 208 00:07:34,925 --> 00:07:37,780 to. I played tackle football on, you know, 209 00:07:37,780 --> 00:07:40,660 backyard football. I played club rugby in college. 210 00:07:40,660 --> 00:07:41,780 Did you tell your mom that you were 211 00:07:41,780 --> 00:07:43,060 doing this? But this all caught up with 212 00:07:43,060 --> 00:07:45,060 CJ when he had to have shoulder replacement 213 00:07:45,060 --> 00:07:46,980 surgery, and that's when he grew close with 214 00:07:46,980 --> 00:07:49,139 his medical team who encouraged him to instead 215 00:07:49,139 --> 00:07:51,055 of trying to beat them, join them. And 216 00:07:51,055 --> 00:07:52,415 now I just get to take care of 217 00:07:52,415 --> 00:07:55,134 people that have my experiences and something, and 218 00:07:55,134 --> 00:07:56,814 they bring their own, and we get to 219 00:07:56,814 --> 00:07:58,095 talk through them and figure out how to 220 00:07:58,095 --> 00:07:59,455 make their life better. We didn't have a 221 00:07:59,455 --> 00:08:01,375 lot of the therapies that we have now, 222 00:08:01,375 --> 00:08:02,735 which was a lot of the reason why 223 00:08:02,735 --> 00:08:04,735 people got pulled out of stuff when when 224 00:08:04,735 --> 00:08:06,720 I was young. Kids But CJ isn't here 225 00:08:06,720 --> 00:08:08,479 to just speak to his own experience of 226 00:08:08,479 --> 00:08:10,639 rebelling against treatment as a kid. He's here 227 00:08:10,639 --> 00:08:12,560 to provide testimony to the success he has 228 00:08:12,560 --> 00:08:14,399 seen with many of the new and exciting 229 00:08:14,399 --> 00:08:16,879 therapies that are becoming readily available. We've been 230 00:08:16,879 --> 00:08:19,615 waiting for this forever. We've made steps. It's 231 00:08:19,615 --> 00:08:21,615 taken a lot longer than was hoped for. 232 00:08:21,615 --> 00:08:23,535 But there's new therapies coming out all the 233 00:08:23,535 --> 00:08:25,795 time, which, you know, lead us to continued 234 00:08:25,935 --> 00:08:27,774 hope of there will be a cure at 235 00:08:27,774 --> 00:08:29,855 some point. My name is Dominic. Right now, 236 00:08:29,855 --> 00:08:32,309 I'm a junior in college. I'm studying film 237 00:08:32,309 --> 00:08:34,490 and television. I was starting to get irresponsible 238 00:08:34,710 --> 00:08:36,549 with doing my medicine. Just came at a 239 00:08:36,549 --> 00:08:38,710 perfect time. My quality of life has been 240 00:08:38,710 --> 00:08:41,429 great. I haven't needed prophy. I haven't had 241 00:08:41,429 --> 00:08:42,410 any bleeds, 242 00:08:42,789 --> 00:08:45,029 and I really just live with less on 243 00:08:45,029 --> 00:08:46,710 my shoulders. If you would have told me 244 00:08:46,710 --> 00:08:49,065 last year that I would be getting brought 245 00:08:49,065 --> 00:08:51,065 out to Florida to speak to a bunch 246 00:08:51,065 --> 00:08:53,384 of hemophilia, be patients, and share my story, 247 00:08:53,384 --> 00:08:54,985 I would have never believed you. And it's 248 00:08:54,985 --> 00:08:56,985 stories like Dominic's that remind us that we're 249 00:08:56,985 --> 00:08:58,585 all human, and we just want to feel 250 00:08:58,585 --> 00:09:00,585 the safety and strength of a community when 251 00:09:00,585 --> 00:09:02,264 you know that you've been pushing the boundaries 252 00:09:02,264 --> 00:09:04,000 of what your body can handle. Or in 253 00:09:04,000 --> 00:09:05,679 the case of Michael, a life devoted to 254 00:09:05,679 --> 00:09:08,079 activity and sport that new therapies are allowing 255 00:09:08,079 --> 00:09:09,919 him to have. It even led to him 256 00:09:09,919 --> 00:09:12,159 being written about in Men's Health magazine. Because 257 00:09:12,159 --> 00:09:14,159 I was on demand at first, then I 258 00:09:14,159 --> 00:09:16,319 switched to prophy treatment. And then even with 259 00:09:16,319 --> 00:09:18,315 that, I was still having breakthrough bleeds. So, 260 00:09:18,475 --> 00:09:19,914 you know, I don't like needles. So I'm 261 00:09:19,914 --> 00:09:21,674 like, if there's anything that could just take 262 00:09:21,674 --> 00:09:23,674 this away, I'm ready. So being in men's 263 00:09:23,674 --> 00:09:24,794 health, it was really, 264 00:09:25,434 --> 00:09:27,434 I mean, it was shocking, you know, leading 265 00:09:27,434 --> 00:09:28,715 up to it. I was like, if I 266 00:09:28,715 --> 00:09:31,034 can make men's health with just, you know, 267 00:09:31,034 --> 00:09:32,414 advocating for my community 268 00:09:32,715 --> 00:09:35,699 on top of having quote unquote muscles, that 269 00:09:35,699 --> 00:09:38,419 would be awesome because that right there could 270 00:09:38,419 --> 00:09:40,179 show you that, okay, you know, here's a 271 00:09:40,179 --> 00:09:41,740 not something else you can do. Whether it's 272 00:09:41,779 --> 00:09:43,620 okay. You're doing sports, but you were afraid 273 00:09:43,620 --> 00:09:46,179 of weight lifting because, you know, the injury. 274 00:09:46,179 --> 00:09:48,600 Well, here's someone who has a bleeding disorder 275 00:09:48,740 --> 00:09:51,184 who trains with weights. You know who you 276 00:09:51,184 --> 00:09:53,585 are as a person. Hemophilia isn't who you 277 00:09:53,585 --> 00:09:54,945 are, it's a part of who you are. 278 00:09:54,945 --> 00:09:56,945 It's you have to get uncomfortable. Make yourself 279 00:09:56,945 --> 00:09:58,865 uncomfortable. Be a part of a family. No, 280 00:09:58,865 --> 00:10:00,865 you're not, you know, by yourself and sky's 281 00:10:00,865 --> 00:10:02,465 the limit, man. You see what I think 282 00:10:02,465 --> 00:10:04,225 the quote is if you wanna go far, 283 00:10:04,225 --> 00:10:06,139 go by yourself. If you wanna go further, 284 00:10:06,139 --> 00:10:06,799 go together. 285 00:10:12,220 --> 00:10:13,919 When it's your first year at the Symposium, 286 00:10:14,220 --> 00:10:17,019 everything can feel new. New faces, new schedules, 287 00:10:17,019 --> 00:10:19,605 new emotions. But in that newness, there's potential 288 00:10:19,605 --> 00:10:21,784 for something truly powerful, transformation. 289 00:10:22,164 --> 00:10:24,485 For Josh and Megan, attending the coalition's annual 290 00:10:24,485 --> 00:10:26,164 event for the first time wasn't just a 291 00:10:26,164 --> 00:10:28,084 chance to learn. It was a chance to 292 00:10:28,084 --> 00:10:29,065 feel less alone. 293 00:10:29,445 --> 00:10:31,605 From Denver, Colorado, they came with open hearts 294 00:10:31,605 --> 00:10:33,784 and open minds, hoping to find connection. 295 00:10:34,139 --> 00:10:35,899 What they found was a community that welcomed 296 00:10:35,899 --> 00:10:38,379 them and their son, Reuben, with open arms. 297 00:10:38,379 --> 00:10:40,540 Our youngest son, Reuben, he's four years old. 298 00:10:40,540 --> 00:10:42,379 He has severe hemophilia b, and our other 299 00:10:42,379 --> 00:10:43,980 two are ineffective. So it's great to meet, 300 00:10:43,980 --> 00:10:45,820 like, new families. When I see someone with 301 00:10:45,820 --> 00:10:47,264 young kids that are, like, similar in age 302 00:10:47,264 --> 00:10:48,865 to our kids, it's been great to meet 303 00:10:48,865 --> 00:10:50,784 people like that. No family history and nowhere 304 00:10:50,784 --> 00:10:53,105 to turn. Something all too familiar for families 305 00:10:53,105 --> 00:10:55,024 with a new diagnosis before they are connected 306 00:10:55,024 --> 00:10:56,544 to the coalition. It was surprising we I 307 00:10:56,544 --> 00:10:58,065 didn't even know what it was, really. I 308 00:10:58,065 --> 00:11:00,309 had to Google it. Like, it was very 309 00:11:00,309 --> 00:11:02,309 different from anything we'd ever been used to. 310 00:11:02,309 --> 00:11:04,309 What led you to connect with community in 311 00:11:04,309 --> 00:11:05,990 Colorado at that point? We actually we brought 312 00:11:05,990 --> 00:11:07,829 him in because he had bruises, and they 313 00:11:07,829 --> 00:11:09,750 ended up doing a blood test, and his 314 00:11:09,750 --> 00:11:11,269 veins burst when they did that. And so 315 00:11:11,269 --> 00:11:12,389 then he had a bleed, and then we 316 00:11:12,389 --> 00:11:13,990 were in the hospital. And The journey to 317 00:11:13,990 --> 00:11:16,684 a hemophilia b diagnosis is often marked by 318 00:11:16,684 --> 00:11:20,304 trauma, unexpected bleeds, hospital visits, unanswered questions. 319 00:11:20,925 --> 00:11:23,024 These are moments filled with fear and uncertainty, 320 00:11:23,325 --> 00:11:25,345 and they shape families in lasting ways. 321 00:11:25,804 --> 00:11:28,304 Fortunately, many are eventually pointed to a hemophilia 322 00:11:28,445 --> 00:11:31,105 treatment center, often referred to as an HTC. 323 00:11:31,919 --> 00:11:34,559 These specialized centers are staffed by teams who 324 00:11:34,559 --> 00:11:37,539 understand hemophilia inside and out, hematologists, 325 00:11:37,840 --> 00:11:40,580 nurses, social workers, physical therapists, and more. 326 00:11:40,960 --> 00:11:43,519 That early connection is critical because the truth 327 00:11:43,519 --> 00:11:47,174 is many general practitioners and emergency physicians receive 328 00:11:47,174 --> 00:11:49,174 minimal training on how to care for someone 329 00:11:49,174 --> 00:11:50,315 with a bleeding disorder. 330 00:11:50,774 --> 00:11:53,174 Getting to an HTC as early as possible 331 00:11:53,174 --> 00:11:55,434 can mean the difference between crisis and control, 332 00:11:55,735 --> 00:11:58,134 and it lays the foundation for expert care, 333 00:11:58,134 --> 00:12:00,920 informed decision making, and where your community could 334 00:12:00,920 --> 00:12:02,600 start to grow. Our people there in Colorado, 335 00:12:02,600 --> 00:12:03,799 those were the some of the first people 336 00:12:03,799 --> 00:12:05,340 we met in Colorado, and, 337 00:12:06,600 --> 00:12:08,120 they were just the people that we could 338 00:12:08,120 --> 00:12:10,200 could talk to and Mhmm. Rely on. So 339 00:12:10,200 --> 00:12:11,899 it was it was really good. 340 00:12:12,279 --> 00:12:14,014 As parents, and your kids aren't even here, 341 00:12:14,014 --> 00:12:14,894 so you can speak very 342 00:12:15,615 --> 00:12:17,054 where are they? Are they, like, at the 343 00:12:17,054 --> 00:12:19,615 youth camps? Yeah. The the day the childcare. 344 00:12:19,615 --> 00:12:21,454 Yeah. Cool. What kind of emotions are you 345 00:12:21,454 --> 00:12:23,134 guys experiencing just, like, being here and, like, 346 00:12:23,134 --> 00:12:24,034 around these families? 347 00:12:24,654 --> 00:12:26,414 It's actually kinda bringing me back to, like, 348 00:12:26,414 --> 00:12:27,694 when we found out. I feel like we're 349 00:12:27,694 --> 00:12:29,330 in a a much better spot now. We, 350 00:12:29,330 --> 00:12:31,089 like, understand what it is. We have, like, 351 00:12:31,089 --> 00:12:33,429 a, you know, treatment plan we're working on. 352 00:12:33,570 --> 00:12:36,309 And, like, there's there's less unknowns, which is, 353 00:12:37,009 --> 00:12:39,169 comforting now. Coming back here kinda brings you 354 00:12:39,169 --> 00:12:40,529 back to, like, oh, yeah. That's what it 355 00:12:40,529 --> 00:12:42,464 was like to, you know, have a two 356 00:12:42,464 --> 00:12:43,524 year old or something 357 00:12:43,825 --> 00:12:45,985 who has hemophilia or someone just starting out 358 00:12:45,985 --> 00:12:47,584 or doesn't really have a great connection to 359 00:12:47,584 --> 00:12:50,144 community. Stuff like this is, like, you know, 360 00:12:50,144 --> 00:12:52,144 really helpful. Yeah. And, like, I don't know. 361 00:12:52,144 --> 00:12:54,065 Just the importance of it. A reminder maybe 362 00:12:54,065 --> 00:12:55,745 of how far you've come? Exact yeah. Exactly. 363 00:12:55,745 --> 00:12:56,789 Let's do it for that. 364 00:12:58,070 --> 00:12:59,929 So our youngest, Reuben, the one with hemophilia, 365 00:13:01,029 --> 00:13:02,549 where he's four, I feel like he's just 366 00:13:02,549 --> 00:13:04,870 starting to realize that, like, he's not like 367 00:13:04,870 --> 00:13:06,709 his brothers. Like, he's asked questions like, why 368 00:13:06,709 --> 00:13:09,269 don't they have to get infusions? And, he 369 00:13:09,269 --> 00:13:10,709 went through a couple months where he didn't 370 00:13:10,709 --> 00:13:12,715 wanna wear his medical bracelets. Like, none of 371 00:13:12,715 --> 00:13:14,375 my friends wear a medical bracelet. Like, I 372 00:13:14,375 --> 00:13:16,215 don't I don't wanna do this. Why do 373 00:13:16,215 --> 00:13:17,754 I have to do this kind of thing? 374 00:13:17,894 --> 00:13:20,294 And, we actually had to give him an 375 00:13:20,294 --> 00:13:22,774 infusion this morning just, like, his prophy, like, 376 00:13:22,774 --> 00:13:23,835 his regular infusions. 377 00:13:24,294 --> 00:13:25,014 And we, 378 00:13:25,575 --> 00:13:27,735 run into this little boy named Calvin who 379 00:13:27,735 --> 00:13:30,029 has he met Ivy as well. He's here. 380 00:13:30,269 --> 00:13:31,549 He's 10 years old, so he's a little 381 00:13:31,549 --> 00:13:33,629 bit older. He's actually friends with my my 382 00:13:33,629 --> 00:13:36,509 oldest son, Harvey. Mhmm. But they're both on 383 00:13:36,509 --> 00:13:37,950 the same medication, and, 384 00:13:38,589 --> 00:13:40,509 he needed to do an infusion this morning 385 00:13:40,509 --> 00:13:42,029 too. So he invited us. He was like, 386 00:13:42,029 --> 00:13:43,894 hey. Do you wanna do an infusion with 387 00:13:43,894 --> 00:13:46,054 us? And so Reuben and Calvin went over 388 00:13:46,054 --> 00:13:48,455 there, and Calvin, like, sat next to him, 389 00:13:48,455 --> 00:13:49,434 and he was, like, 390 00:13:49,815 --> 00:13:51,975 walking through all the steps. And Reuben was, 391 00:13:51,975 --> 00:13:54,054 like, so excited to have somebody else there 392 00:13:54,054 --> 00:13:54,715 with him. 393 00:13:55,710 --> 00:13:57,470 And, like, usually, Reuben won't let us touch 394 00:13:57,470 --> 00:13:59,629 him. He must be, like he's, like, numbed 395 00:13:59,629 --> 00:14:00,769 it, like, all the way. 396 00:14:01,870 --> 00:14:03,470 But, like, he didn't he, like, didn't want 397 00:14:03,470 --> 00:14:04,750 the numbing thing. He was like, Calvin doesn't 398 00:14:04,750 --> 00:14:06,190 do that. I don't want that either. And 399 00:14:06,190 --> 00:14:06,690 so, 400 00:14:07,309 --> 00:14:09,394 but, like, Calvin literally, like, held his hand 401 00:14:09,394 --> 00:14:11,154 while I punched it in and he didn't 402 00:14:11,154 --> 00:14:13,715 move. Like, he held still and, like, it 403 00:14:13,715 --> 00:14:15,475 was Way different than how it normally is. 404 00:14:15,475 --> 00:14:17,154 I mean, it totally is. Switch. It's okay. 405 00:14:17,154 --> 00:14:18,455 I'm crying too. I know. 406 00:14:18,995 --> 00:14:20,595 Like, you're not the only one. There's more 407 00:14:20,595 --> 00:14:22,289 people here just like you, and you're just, 408 00:14:22,289 --> 00:14:24,690 like, so excited. Like, they afterwards, they, like, 409 00:14:24,690 --> 00:14:26,370 walked over and they, like, picked up prizes 410 00:14:26,370 --> 00:14:29,089 together, and Calvin helped them, like, get breakfast. 411 00:14:29,089 --> 00:14:30,610 And there was just, like, this connection there, 412 00:14:30,610 --> 00:14:31,589 and it was so 413 00:14:31,970 --> 00:14:33,569 that, like, made the whole trip worth it. 414 00:14:33,569 --> 00:14:34,230 Like, everything 415 00:14:34,769 --> 00:14:36,284 just for that one moment, it was it 416 00:14:36,284 --> 00:14:37,625 was totally worth it. 417 00:14:46,725 --> 00:14:48,404 One of the most beautiful things about the 418 00:14:48,404 --> 00:14:49,625 Coalition Symposium 419 00:14:49,970 --> 00:14:51,649 is that it gives space for all the 420 00:14:51,649 --> 00:14:52,149 feelings. 421 00:14:52,769 --> 00:14:54,370 One minute you're tearing up in the teen 422 00:14:54,370 --> 00:14:56,690 lounge. The next you're laughing over lunch with 423 00:14:56,690 --> 00:14:58,149 someone who just gets it. 424 00:14:58,769 --> 00:15:00,850 When you come to the Symposium, you bring 425 00:15:00,850 --> 00:15:02,950 all the hats you wear in life. Parent, 426 00:15:03,090 --> 00:15:06,225 patient, partner, caregiver, you name it. And while 427 00:15:06,225 --> 00:15:08,144 you're juggling all that, it's easy to forget, 428 00:15:08,144 --> 00:15:09,605 you're an individual too. 429 00:15:10,225 --> 00:15:12,945 That's why the Coalition offers dedicated breakout spaces 430 00:15:12,945 --> 00:15:14,725 like the men's and women's sessions. 431 00:15:15,024 --> 00:15:16,784 It's a chance to connect with people who 432 00:15:16,784 --> 00:15:19,424 share not only your diagnosis experience, but your 433 00:15:19,424 --> 00:15:22,220 day to day reality, to laugh, vent, and 434 00:15:22,220 --> 00:15:24,220 maybe learn something new from someone who's been 435 00:15:24,220 --> 00:15:25,500 where you are. And that's where I ran 436 00:15:25,500 --> 00:15:27,980 into Mike and Ray from Toledo, Ohio. So 437 00:15:27,980 --> 00:15:29,580 my wife is a carrier, and I have 438 00:15:29,580 --> 00:15:32,559 two sons. My youngest has hemophilia. He's, mild. 439 00:15:32,700 --> 00:15:34,379 My wife is a carrier. His wife and 440 00:15:34,379 --> 00:15:35,440 my wife are sisters. 441 00:15:36,074 --> 00:15:38,654 And then both my boys have mild hemophilia, 442 00:15:39,034 --> 00:15:41,834 and then my daughter is a symptomatic carrier. 443 00:15:41,834 --> 00:15:44,235 Okay. Good. So brothers in law? Yes. Alright. 444 00:15:44,235 --> 00:15:46,394 Fantastic. Where where I'm trying to capture is 445 00:15:46,394 --> 00:15:48,654 just the importance of the Coalition for Hemophilia 446 00:15:48,714 --> 00:15:51,669 b and, I mean, this symposium specifically. Just 447 00:15:51,669 --> 00:15:53,909 absolutely blown away by the connectedness with the 448 00:15:54,149 --> 00:15:56,309 in the community, how much you learn. There's 449 00:15:56,309 --> 00:15:59,029 a lot, around, like, advocacy. And so, there 450 00:15:59,029 --> 00:16:00,709 was a really interesting man last year who 451 00:16:00,709 --> 00:16:02,549 gave a a talk around how this is 452 00:16:02,549 --> 00:16:04,075 your patient bill of rights, and this is 453 00:16:04,075 --> 00:16:05,115 what you need to make sure you go 454 00:16:05,115 --> 00:16:08,235 in, and advocate for because sometimes the doctors 455 00:16:08,235 --> 00:16:09,754 will be wrong, especially if it's not your 456 00:16:09,754 --> 00:16:11,674 normal doctors, if, you know, if you're traveling. 457 00:16:11,674 --> 00:16:13,434 Definitely on our on our agenda to come 458 00:16:13,434 --> 00:16:15,115 back every year and make sure we absorb 459 00:16:15,115 --> 00:16:16,554 as much as possible and that we're doing 460 00:16:16,554 --> 00:16:18,735 everything we're supposed to to be good caretakers 461 00:16:18,875 --> 00:16:20,649 for our patients. What's it like to be 462 00:16:20,649 --> 00:16:22,029 a dad to kids with hemophilia 463 00:16:22,570 --> 00:16:24,750 b? That's why Mike and Ryan are here. 464 00:16:24,889 --> 00:16:25,950 They didn't know. 465 00:16:26,330 --> 00:16:27,930 But now they are caring for children who 466 00:16:27,930 --> 00:16:28,750 do have it. 467 00:16:29,050 --> 00:16:30,410 So they stepped up to the plate to 468 00:16:30,410 --> 00:16:32,490 get involved and connected to their dads in 469 00:16:32,490 --> 00:16:33,950 the community to learn. 470 00:16:34,634 --> 00:16:36,394 Most of their lives without actually knowing that 471 00:16:36,394 --> 00:16:38,634 they had hemophilia. It was, it was a 472 00:16:38,634 --> 00:16:41,355 car accident that that, led us to finding 473 00:16:41,355 --> 00:16:42,955 finding it out. But coming to a place 474 00:16:42,955 --> 00:16:44,315 like this and meeting a whole you know, 475 00:16:44,315 --> 00:16:46,235 everybody that we have and Yeah. Having all 476 00:16:46,235 --> 00:16:48,875 the resources, it kinda helps acclimate you to 477 00:16:48,875 --> 00:16:51,720 something that sounds really scary. But Right. But 478 00:16:51,720 --> 00:16:53,580 when you have the information and the resources, 479 00:16:54,200 --> 00:16:56,200 it is all it is reduced. Yeah. Yeah. 480 00:16:56,200 --> 00:16:58,120 And I think what I'm learning as someone 481 00:16:58,120 --> 00:16:59,480 who is very new to this, is just 482 00:16:59,480 --> 00:17:01,399 this idea of how far the science and 483 00:17:01,399 --> 00:17:04,059 the medicine and the technology has come. Stigma 484 00:17:04,644 --> 00:17:06,085 of even having it Yeah. 485 00:17:06,884 --> 00:17:08,724 Is slowly eroding, but that I feel like 486 00:17:08,724 --> 00:17:10,565 it takes work. Yeah. I I think that's 487 00:17:10,565 --> 00:17:12,085 that's that's a really great point. A lot 488 00:17:12,085 --> 00:17:13,924 of the talks we have seems increasingly you 489 00:17:13,924 --> 00:17:16,164 hear about, you know, kids don't have any 490 00:17:16,164 --> 00:17:17,684 problem talking to their friends about it, and 491 00:17:17,684 --> 00:17:19,365 it's just a very natural, normal thing. And 492 00:17:19,444 --> 00:17:19,740 Yeah. 493 00:17:21,339 --> 00:17:23,099 I think this this brings awareness. This makes 494 00:17:23,099 --> 00:17:25,179 everyone more connected and make sure that it's, 495 00:17:25,179 --> 00:17:27,259 yeah, it's not something in the shadows. And 496 00:17:27,259 --> 00:17:29,179 as I walked around the men's session making 497 00:17:29,179 --> 00:17:31,259 small talk and enjoying a drink, there was 498 00:17:31,259 --> 00:17:33,555 a sense of relief among everybody there. 499 00:17:34,035 --> 00:17:35,875 These moments to come together as the men 500 00:17:35,875 --> 00:17:36,535 of hemophilia 501 00:17:36,994 --> 00:17:38,835 only comes around a couple times a year, 502 00:17:38,835 --> 00:17:41,654 so there's hugging and laughing and catching up. 503 00:17:41,875 --> 00:17:43,634 It reminded me of a friendship. And it 504 00:17:43,634 --> 00:17:45,075 was on the other side of the resort 505 00:17:45,075 --> 00:17:47,009 where the women gathered to tell their stories 506 00:17:47,089 --> 00:17:48,769 and reflect on their emotions of what it 507 00:17:48,769 --> 00:17:51,430 means to be a mother navigating hemophilia b, 508 00:17:51,890 --> 00:17:54,070 but also to pump one another up. 509 00:18:00,224 --> 00:18:01,744 And it was during this session that I 510 00:18:01,744 --> 00:18:03,664 witnessed a brand new mom gather up the 511 00:18:03,664 --> 00:18:05,505 courage to stand up and tell her story 512 00:18:05,505 --> 00:18:07,765 in front of hundreds of now new family, 513 00:18:08,065 --> 00:18:10,144 to thank the women of hemophilia b for 514 00:18:10,144 --> 00:18:12,210 being there for her at the hardest moment 515 00:18:12,210 --> 00:18:13,730 in her life. My name is Tiffany. Yes. 516 00:18:13,730 --> 00:18:14,769 So I have a three and a half 517 00:18:14,769 --> 00:18:16,789 year old son named Jack who was diagnosed 518 00:18:16,849 --> 00:18:19,250 with severe hemophilia b when he was two 519 00:18:19,250 --> 00:18:21,890 days old. He had a circumcision that didn't 520 00:18:21,890 --> 00:18:23,730 stop bleeding. So, obviously, when we took him 521 00:18:23,730 --> 00:18:25,954 in to get looked at after a series 522 00:18:25,954 --> 00:18:27,575 of blood work, it was he was diagnosed. 523 00:18:27,954 --> 00:18:30,514 He was a spontaneous genetic mutation, so he 524 00:18:30,514 --> 00:18:32,115 is the first one in our family line 525 00:18:32,115 --> 00:18:34,595 with hemophilia b. Since that time, you've found 526 00:18:34,595 --> 00:18:36,609 the Coalition for Hemophilia b. Can you just 527 00:18:36,609 --> 00:18:37,109 tell 528 00:18:37,490 --> 00:18:39,409 us about that experience? I know when we 529 00:18:39,409 --> 00:18:41,169 got diagnosed, kinda how I handle any kind 530 00:18:41,169 --> 00:18:42,929 of stressor is to dive in to, like, 531 00:18:42,929 --> 00:18:44,849 information overload. So I read everything I could 532 00:18:44,849 --> 00:18:45,509 about hemophilia, 533 00:18:45,890 --> 00:18:48,049 did every Google search, like, found every Facebook 534 00:18:48,049 --> 00:18:50,075 page. So I must have found it in 535 00:18:50,075 --> 00:18:51,914 the blur. Mhmm. But since I'm in the 536 00:18:51,914 --> 00:18:53,994 community, just been really really great in terms 537 00:18:53,994 --> 00:18:56,414 of the programs and support. I really appreciate 538 00:18:56,474 --> 00:18:59,115 how inclusive the community is in the planning 539 00:18:59,115 --> 00:19:00,795 here. So our children are in the youth 540 00:19:00,795 --> 00:19:02,369 camp right now. Yeah. And how they heard, 541 00:19:02,609 --> 00:19:04,210 programs for them while we're here. So, we 542 00:19:04,210 --> 00:19:06,529 can actually enjoy the content and -Do this. 543 00:19:06,529 --> 00:19:08,450 -Absorb it but then throughout the year between 544 00:19:08,450 --> 00:19:10,690 the women's retreat and the men's, different things 545 00:19:10,690 --> 00:19:11,509 for the children. 546 00:19:12,289 --> 00:19:13,670 It's it's been really great. 547 00:19:22,694 --> 00:19:24,375 We've talked a lot in this episode about 548 00:19:24,375 --> 00:19:26,234 connection, community, and education. 549 00:19:26,694 --> 00:19:28,295 But there's one thread that ties it all 550 00:19:28,295 --> 00:19:29,539 together, advocacy. 551 00:19:30,160 --> 00:19:32,000 And while you might think of advocacy as 552 00:19:32,000 --> 00:19:33,940 standing on a stage or meeting with lawmakers, 553 00:19:34,480 --> 00:19:36,019 it can take so many forms. 554 00:19:36,400 --> 00:19:38,080 It can look like sharing your story for 555 00:19:38,080 --> 00:19:39,920 the first time or even running a booth 556 00:19:39,920 --> 00:19:41,600 in the middle of a bustling hallway at 557 00:19:41,600 --> 00:19:42,259 the symposium. 558 00:19:42,815 --> 00:19:44,414 Now I didn't get a chance to interview 559 00:19:44,414 --> 00:19:46,335 these next two voices during the event, but 560 00:19:46,335 --> 00:19:48,654 we caught up shortly after. And they had 561 00:19:48,654 --> 00:19:50,894 powerful things to say about the many ways 562 00:19:50,894 --> 00:19:52,674 advocacy can spark change, 563 00:19:52,974 --> 00:19:55,855 from visibility to education to the quiet, life 564 00:19:55,855 --> 00:19:58,319 changing moments of one on one connection. For 565 00:19:58,319 --> 00:20:00,500 the first time ever, the Coalition for Hemophilia 566 00:20:00,640 --> 00:20:02,880 b launched a dedicated booth focused on women 567 00:20:02,880 --> 00:20:05,599 with bleeding disorders. The booth titled Women Bleed 568 00:20:05,599 --> 00:20:07,599 two was created to offer a space for 569 00:20:07,599 --> 00:20:10,079 women to share their stories, ask questions, and 570 00:20:10,079 --> 00:20:12,179 feel seen in a community where their symptoms, 571 00:20:12,399 --> 00:20:14,815 like heavy menstrual bleeding, have often been misunderstood 572 00:20:15,434 --> 00:20:17,835 or dismissed. The booth was staffed entirely by 573 00:20:17,835 --> 00:20:20,795 women living with bleeding disorders themselves, including Jennifer 574 00:20:20,795 --> 00:20:23,035 DeGloper, who's part of the coalition team and 575 00:20:23,035 --> 00:20:25,674 lives with hemophilia b. Women have had a 576 00:20:25,674 --> 00:20:26,880 really tough 577 00:20:27,200 --> 00:20:29,920 road with the diagnosis of hemophilia and in 578 00:20:29,920 --> 00:20:33,859 the hemophilia space. It's been only the last 579 00:20:34,000 --> 00:20:36,799 few years that women are starting to be 580 00:20:36,799 --> 00:20:37,299 recognized 581 00:20:37,680 --> 00:20:39,460 as actually having hemophilia 582 00:20:40,134 --> 00:20:43,115 and having bleeding symptoms and having bleeding problems 583 00:20:43,335 --> 00:20:45,595 and then being able to get treatment. 584 00:20:45,894 --> 00:20:47,674 Because this is inherited, 585 00:20:48,214 --> 00:20:50,535 a lot of times within a family, there 586 00:20:50,535 --> 00:20:53,190 will be heavy menstrual bleeding and it's just 587 00:20:53,349 --> 00:20:55,690 typical. It's normal for them or nosebleeds 588 00:20:56,069 --> 00:20:58,149 or some of the easy bruising, some of 589 00:20:58,149 --> 00:21:00,629 the other symptoms. And they don't the women 590 00:21:00,629 --> 00:21:03,690 haven't realized until recently that that's not normal. 591 00:21:03,829 --> 00:21:06,789 It was amazingly important just to spread the 592 00:21:06,789 --> 00:21:10,455 word and to have this conversation with women 593 00:21:10,455 --> 00:21:12,375 who maybe have been blown off or have 594 00:21:12,375 --> 00:21:15,434 been kind of discounting their own bleeding symptoms 595 00:21:15,494 --> 00:21:17,894 when they actually do have a problem that 596 00:21:17,894 --> 00:21:20,375 needs to be recognized and treated. And when 597 00:21:20,375 --> 00:21:22,529 you bring voices together, the ones that leave 598 00:21:22,529 --> 00:21:24,690 a lasting impact are often from the least 599 00:21:24,690 --> 00:21:27,490 likely places. What was amazing is that the 600 00:21:27,490 --> 00:21:30,610 men were also engaging, and the men men 601 00:21:30,610 --> 00:21:32,529 wanted to talk about it too because a 602 00:21:32,529 --> 00:21:35,029 lot of them have mothers, sisters, 603 00:21:35,764 --> 00:21:37,944 daughters that are experiencing 604 00:21:38,244 --> 00:21:40,964 the same thing. They're having bleeding symptoms that 605 00:21:40,964 --> 00:21:42,505 are not going recognized. 606 00:21:43,044 --> 00:21:44,424 Just that men were willing 607 00:21:44,804 --> 00:21:46,264 to talk about heavy periods, 608 00:21:47,044 --> 00:21:49,750 bruises and nosebleeds and everyday life for a 609 00:21:49,750 --> 00:21:52,410 lot of these people. To have these conversations, 610 00:21:52,549 --> 00:21:54,470 not only with the women in the community, 611 00:21:54,470 --> 00:21:56,470 but with the men too. I know we 612 00:21:56,470 --> 00:21:59,190 made a difference for several women in the 613 00:21:59,190 --> 00:22:01,589 community that are now going to go back 614 00:22:01,589 --> 00:22:04,365 to their doctors and have the tough conversation 615 00:22:04,664 --> 00:22:06,365 and be recognized and 616 00:22:06,984 --> 00:22:09,865 and treated. Jennifer's story is a reminder that 617 00:22:09,865 --> 00:22:12,904 advocacy often starts with one simple idea. What 618 00:22:12,904 --> 00:22:14,684 if we made space for this conversation? 619 00:22:15,065 --> 00:22:16,744 And it doesn't just impact those at the 620 00:22:16,744 --> 00:22:20,110 booth. It ripples outward into clinics, households, and 621 00:22:20,110 --> 00:22:21,090 next year's symposium. 622 00:22:21,630 --> 00:22:22,769 And then there's Bobby. 623 00:22:23,230 --> 00:22:24,990 If you've ever met Bobby, you know he 624 00:22:24,990 --> 00:22:27,630 brings equal parts wisdom, warmth, and wit to 625 00:22:27,630 --> 00:22:30,269 every room he walks into. Bobby helped lead 626 00:22:30,269 --> 00:22:32,875 the Coalition's advocacy booth this year, and what 627 00:22:32,875 --> 00:22:35,515 started as a few whiteboards and markers turned 628 00:22:35,515 --> 00:22:38,015 into something much more, a space for redefining 629 00:22:38,075 --> 00:22:40,794 what advocacy really means. Many of the people 630 00:22:40,794 --> 00:22:42,095 who came to the booth 631 00:22:42,474 --> 00:22:44,015 gave either a dictionary 632 00:22:44,394 --> 00:22:45,615 definition of advocacy 633 00:22:46,430 --> 00:22:47,569 or the definition 634 00:22:48,029 --> 00:22:48,930 based upon 635 00:22:49,390 --> 00:22:52,690 their income source, which traditionally has been seen, 636 00:22:53,710 --> 00:22:56,430 as advocacy in front of a camera with 637 00:22:56,430 --> 00:22:58,875 the coat and tie on, and that it's 638 00:22:58,875 --> 00:22:59,695 it's very, 639 00:23:00,234 --> 00:23:00,734 nonpersonal 640 00:23:01,115 --> 00:23:03,515 to a certain degree and just focus on 641 00:23:03,515 --> 00:23:06,475 an end result and not the process. However, 642 00:23:06,475 --> 00:23:08,475 at at the booth, it was a range 643 00:23:08,475 --> 00:23:11,480 of kids, adults, grandpa, all of that. I 644 00:23:11,480 --> 00:23:12,839 was talking to a mom. We had the 645 00:23:12,839 --> 00:23:15,500 little whiteboard having, you know, conversations and whatnot. 646 00:23:15,640 --> 00:23:17,640 And her first question was, you know, how 647 00:23:17,640 --> 00:23:20,759 can I get involved or more active? And 648 00:23:20,759 --> 00:23:23,399 that moment shifted it to where because there 649 00:23:23,399 --> 00:23:24,539 was an expressed 650 00:23:25,000 --> 00:23:27,664 need or want. It's like, I've come to 651 00:23:27,664 --> 00:23:30,545 the point to understand when folks express something, 652 00:23:30,545 --> 00:23:32,705 give them the tools they need in that 653 00:23:32,705 --> 00:23:34,865 moment and see how far they go with 654 00:23:34,865 --> 00:23:37,045 it so that it doesn't become codependent. 655 00:23:37,424 --> 00:23:39,119 And so she took it, ran with it. 656 00:23:39,599 --> 00:23:40,799 So fast forward, 657 00:23:41,119 --> 00:23:42,880 later on, it was either that day or 658 00:23:42,880 --> 00:23:44,559 the next day, out on the patio talking 659 00:23:44,559 --> 00:23:46,000 with a few of the folks. Here she 660 00:23:46,000 --> 00:23:47,920 comes. Her little son is walking with her. 661 00:23:47,920 --> 00:23:49,599 She comes on out there. I walk from 662 00:23:49,599 --> 00:23:51,680 the other side of the patio. I stick 663 00:23:51,680 --> 00:23:53,984 out to my two my little pinky. I'm 664 00:23:53,984 --> 00:23:55,204 a also a grandfather. 665 00:23:55,505 --> 00:23:57,265 Put the little pinky out and he holds 666 00:23:57,265 --> 00:23:58,085 on to it. 667 00:23:58,384 --> 00:24:01,025 I go sit on the fountain. K? He 668 00:24:01,025 --> 00:24:03,585 sits on the ground. Crosses his legs. I 669 00:24:03,585 --> 00:24:06,065 said, well, I move my cell phone down 670 00:24:06,065 --> 00:24:07,664 and sit on there with his mother's right 671 00:24:07,664 --> 00:24:09,339 there. I said, mother, we got this. And 672 00:24:09,339 --> 00:24:11,579 had a conversation with him. I said, I 673 00:24:11,579 --> 00:24:12,639 also have hemophilia. 674 00:24:12,940 --> 00:24:14,220 I said, come on, I'm a show you 675 00:24:14,220 --> 00:24:16,139 a couple of the guys walked over to 676 00:24:16,139 --> 00:24:17,579 the other side. There was, 677 00:24:18,059 --> 00:24:19,579 one of the guys who's in his mid 678 00:24:19,579 --> 00:24:21,659 thirties. I said, here, stand right there next 679 00:24:21,659 --> 00:24:23,454 to him. You're going to grow up and 680 00:24:23,454 --> 00:24:24,894 you're going to just be as tall as 681 00:24:24,894 --> 00:24:26,815 him and his age. One of the older 682 00:24:26,815 --> 00:24:28,194 guys who's in the sixties 683 00:24:28,575 --> 00:24:30,575 said, now stand right there next to him, 684 00:24:30,575 --> 00:24:32,174 did the same thing. And I said, see, 685 00:24:32,174 --> 00:24:33,855 you have something here. These are the guys 686 00:24:33,855 --> 00:24:36,015 you will grow up to be. And so 687 00:24:36,015 --> 00:24:38,789 much more. The unique thing of that patio 688 00:24:38,789 --> 00:24:39,289 experience, 689 00:24:39,670 --> 00:24:42,869 these were all black men living effectively with 690 00:24:42,869 --> 00:24:45,349 hemophilia B at all stages of life who 691 00:24:45,349 --> 00:24:48,710 represented where our community was and is and 692 00:24:48,710 --> 00:24:50,164 going to. It, 693 00:24:50,625 --> 00:24:52,705 it, it flows in a way that could 694 00:24:52,705 --> 00:24:55,505 not be scripted or written or any kind 695 00:24:55,505 --> 00:24:56,965 of way. I hope they 696 00:24:57,424 --> 00:25:00,305 are carrying with him is the impact of 697 00:25:00,305 --> 00:25:01,125 their story 698 00:25:01,505 --> 00:25:02,884 that leads to their stories 699 00:25:03,480 --> 00:25:06,359 That leads to education, not just for those 700 00:25:06,359 --> 00:25:09,019 in their immediate family, but in their immediate 701 00:25:09,079 --> 00:25:12,220 communities, just someone taking the time to stop 702 00:25:12,279 --> 00:25:13,339 and have a conversation. 703 00:25:19,075 --> 00:25:20,994 And with that, let me take a moment 704 00:25:20,994 --> 00:25:23,075 to celebrate you, the members of the Coalition 705 00:25:23,075 --> 00:25:25,634 for Hemophilia B, and what thirty five years 706 00:25:25,634 --> 00:25:27,734 has meant to so many families and individuals. 707 00:25:28,519 --> 00:25:31,000 The power to transform lives lives within all 708 00:25:31,000 --> 00:25:32,839 of us. You only need to find the 709 00:25:32,839 --> 00:25:35,000 courage to speak up for someone in need 710 00:25:35,000 --> 00:25:37,000 because when you do, you are a much 711 00:25:37,000 --> 00:25:38,539 needed voice for this community, 712 00:25:38,919 --> 00:25:40,859 and it needs you now more than ever. 713 00:25:41,000 --> 00:25:42,914 But don't take my word for it. I'll 714 00:25:42,914 --> 00:25:45,174 let the CEO of the Coalition for Hemophilia 715 00:25:45,315 --> 00:25:47,875 B, Kim Phelan, have the last word. What 716 00:25:47,875 --> 00:25:50,434 emotions are you feeling as we celebrate thirty 717 00:25:50,434 --> 00:25:52,995 five years here in Orlando? I get teary 718 00:25:52,995 --> 00:25:55,715 eyed. My heart is full, and I'm just 719 00:25:55,715 --> 00:25:57,440 so proud of the community 720 00:25:57,819 --> 00:26:00,779 that we created, the platform, but the people 721 00:26:00,779 --> 00:26:03,359 that all came together. Not just treat hemophilia, 722 00:26:03,579 --> 00:26:06,380 but also to treat the mind, body, and 723 00:26:06,380 --> 00:26:07,839 spirit, and the connections 724 00:26:08,220 --> 00:26:10,605 of the people are so powerful and healing. 725 00:26:10,605 --> 00:26:12,205 So to know that they have each other, 726 00:26:12,205 --> 00:26:14,045 that it's like a second family and they're 727 00:26:14,045 --> 00:26:16,465 not alone. So I feel so much love. 728 00:26:16,525 --> 00:26:18,045 The a lot of the message this morning 729 00:26:18,045 --> 00:26:19,484 was give as much as you take or 730 00:26:19,484 --> 00:26:20,924 however you wanna phrase that. So what's your 731 00:26:20,924 --> 00:26:23,369 message to families out there who maybe are 732 00:26:23,369 --> 00:26:25,769 apprehensive about advocacy? You know, I think when 733 00:26:25,769 --> 00:26:27,390 you first hear the word advocacy, 734 00:26:27,690 --> 00:26:30,410 it's intimidating. It is. Because Conflict. What does 735 00:26:30,410 --> 00:26:32,809 that mean? But they need to understand that 736 00:26:32,809 --> 00:26:35,954 advocacy is comes in many, many ways. It 737 00:26:35,954 --> 00:26:38,434 comes in helping others, being a voice for 738 00:26:38,434 --> 00:26:40,674 those who are not speaking well to their 739 00:26:40,674 --> 00:26:44,434 doctors. It's writing to Congress. Advocacy is in 740 00:26:44,434 --> 00:26:46,515 so many shapes and forms. You're advocating for 741 00:26:46,515 --> 00:26:48,515 your child. You're advocating for your family. You're 742 00:26:48,515 --> 00:26:50,990 advocating for yourself. So we have to empower 743 00:26:50,990 --> 00:26:52,909 people to know that advocacy is not a 744 00:26:52,909 --> 00:26:55,309 scary word. Mhmm. Right? And that it's really 745 00:26:55,309 --> 00:26:57,630 simple, then everyone can do it in many 746 00:26:57,630 --> 00:27:00,369 ways. Yeah. As we celebrate thirty five, fortunately, 747 00:27:01,309 --> 00:27:03,404 I do have a lot of hope, but 748 00:27:03,404 --> 00:27:04,144 my concern 749 00:27:04,525 --> 00:27:06,545 is that we are facing challenges 750 00:27:07,565 --> 00:27:09,965 that I saw thirty five years ago, but 751 00:27:09,965 --> 00:27:12,525 in a different way. And I really need 752 00:27:12,525 --> 00:27:14,684 the community to really step up more than 753 00:27:14,684 --> 00:27:17,039 they have ever stepped up before. And so 754 00:27:17,039 --> 00:27:19,279 we're bringing in the strongest advocates that I 755 00:27:19,279 --> 00:27:21,839 know, the real fighters who fought thirty five 756 00:27:21,839 --> 00:27:22,659 years ago 757 00:27:23,039 --> 00:27:26,079 to make this community strong. Thirty five is 758 00:27:26,079 --> 00:27:28,394 going to be bumpy. People are gonna be 759 00:27:28,394 --> 00:27:30,634 more empowered, and they're gonna be stronger than 760 00:27:30,634 --> 00:27:32,634 ever because we're gonna equip them with that 761 00:27:32,634 --> 00:27:33,134 ammunition, 762 00:27:33,515 --> 00:27:35,434 and we're gonna make this community be really 763 00:27:35,434 --> 00:27:36,335 tight and strong. 764 00:27:40,394 --> 00:27:42,369 Thank you for listening to Boundless Bee, the 765 00:27:42,369 --> 00:27:45,009 Hemophilia Bee Podcast, the podcast standing with you 766 00:27:45,009 --> 00:27:46,929 from a family like yours, presented by the 767 00:27:46,929 --> 00:27:49,409 Coalition for Hemophilia Bee and in partnership with 768 00:27:49,409 --> 00:27:51,409 Balancing Life's Issues. Thank you to all the 769 00:27:51,409 --> 00:27:53,649 volunteers and staff that helped bring the symposium 770 00:27:53,649 --> 00:27:55,169 to life, and thank you to our many 771 00:27:55,169 --> 00:27:57,809 families and individuals for their participation in today's 772 00:27:57,809 --> 00:27:59,644 episode. And on a personal note, big thank 773 00:27:59,644 --> 00:28:02,045 you to executive director Erica Garber and director 774 00:28:02,045 --> 00:28:02,704 of communications 775 00:28:03,005 --> 00:28:03,825 Jennifer Deglopper 776 00:28:04,125 --> 00:28:06,045 for trusting me with the vision of this 777 00:28:06,045 --> 00:28:06,545 podcast 778 00:28:07,005 --> 00:28:08,765 and for helping me deal with the technical 779 00:28:08,765 --> 00:28:10,684 back end. For more information on how to 780 00:28:10,684 --> 00:28:15,340 connect with your community, visit www.hemobee.org 781 00:28:15,340 --> 00:28:17,920 and click on get involved then upcoming events. 782 00:28:24,059 --> 00:28:26,140 This has been a production of Balancing Life's 783 00:28:26,140 --> 00:28:28,894 Issues produced by me, Kai. Follow along with 784 00:28:28,894 --> 00:28:32,654 other BLI produced shows at balancinglife'sissues.com. 785 00:28:32,654 --> 00:28:34,034 Got an idea for the show? 786 00:28:34,575 --> 00:28:37,775 Email me, Kai, @balancinglife'sissues.com. 787 00:28:37,775 --> 00:28:39,534 And be sure to follow and subscribe to 788 00:28:39,534 --> 00:28:41,680 this show wherever you listen to podcasts. 789 00:28:42,060 --> 00:28:43,440 Anything else to add, Miles?