1 00:00:01,919 --> 00:00:04,000 I was involved in a conference where we 2 00:00:04,000 --> 00:00:06,719 had, Meghan from Nigeria, but she talked about 3 00:00:06,719 --> 00:00:08,639 how she had to carry her son for 4 00:00:08,639 --> 00:00:10,719 two miles on her back. And this wasn't 5 00:00:10,719 --> 00:00:12,419 an infant, this was like a teenager 6 00:00:12,804 --> 00:00:15,365 because he couldn't walk. And that's really sparked 7 00:00:15,365 --> 00:00:17,525 me and the fact that we could really 8 00:00:17,525 --> 00:00:20,345 all come together. We're one global bleeding disorders 9 00:00:20,405 --> 00:00:20,905 family. 10 00:00:23,685 --> 00:00:26,339 Welcome to Boundless Bee, the Hemophilia Bee Podcast, 11 00:00:26,420 --> 00:00:28,339 the podcast standing with you from a family 12 00:00:28,339 --> 00:00:31,000 like yours, presented by the Coalition for Hemophilia 13 00:00:31,140 --> 00:00:33,640 Bee and in partnership with Balancing Life's Issues. 14 00:00:34,020 --> 00:00:36,020 Today, we're joined by Debbie de la Riva 15 00:00:36,020 --> 00:00:38,579 and Cindy Komar from Save One Life, a 16 00:00:38,579 --> 00:00:42,200 powerful organization bringing hope, dignity, and direct support 17 00:00:42,395 --> 00:00:45,134 to people with bleeding disorders in underserved countries 18 00:00:45,195 --> 00:00:47,695 around the world. From scholarships and enterprise, 19 00:00:48,074 --> 00:00:50,174 grants to vital medication and mentorship, 20 00:00:50,714 --> 00:00:52,634 Save One Life is creating change that doesn't 21 00:00:52,634 --> 00:00:54,655 stop at treatment and empowers futures. 22 00:00:55,190 --> 00:00:56,549 Thank you so much for being here with 23 00:00:56,549 --> 00:00:57,750 us. Debbie, do you want to kick it 24 00:00:57,750 --> 00:00:59,670 off and just kind of explain who you 25 00:00:59,670 --> 00:01:01,690 are and your role within this organization? 26 00:01:08,709 --> 00:01:11,314 Definitely. Because Cindy Comer, I'm the, 27 00:01:11,755 --> 00:01:12,734 I'm the ambassador 28 00:01:13,034 --> 00:01:13,935 program coordinator 29 00:01:14,474 --> 00:01:16,655 Mhmm. For for Save On Life. 30 00:01:16,954 --> 00:01:19,534 And Cindy, you might wanna introduce yourself 31 00:01:19,995 --> 00:01:21,615 as the big cheese. 32 00:01:22,875 --> 00:01:24,840 Sure. Thanks so much for having us today. 33 00:01:24,840 --> 00:01:26,760 I appreciate it. My name is Cindy Comer. 34 00:01:26,760 --> 00:01:29,180 I'm the executive director at Save One Life. 35 00:01:29,719 --> 00:01:30,700 I got involved, 36 00:01:31,880 --> 00:01:33,900 gosh, about six, seven years ago. 37 00:01:34,599 --> 00:01:36,280 But I have been a fan of Save 38 00:01:36,280 --> 00:01:38,395 One Life since my son with hemophilia was 39 00:01:38,395 --> 00:01:39,855 born twenty two years ago. 40 00:01:40,555 --> 00:01:42,314 Gotcha. So I guess talk to us about 41 00:01:42,314 --> 00:01:43,615 the Save One Life organization, 42 00:01:44,075 --> 00:01:46,075 its founding, and, you know, kind of where 43 00:01:46,075 --> 00:01:46,895 it's at today. 44 00:01:47,915 --> 00:01:50,234 Save One Life was started in 2001 by 45 00:01:50,234 --> 00:01:53,509 Laurie Kelly, and Laurie was asked to go 46 00:01:53,509 --> 00:01:56,549 to Dominican Republic to talk about leadership and 47 00:01:56,549 --> 00:01:59,129 advocacy. And that's when she first experienced 48 00:01:59,829 --> 00:02:02,709 the issues with regard to developing countries that 49 00:02:02,709 --> 00:02:03,689 there's no treatment, 50 00:02:04,069 --> 00:02:06,869 that people, with hemophilia are living a life 51 00:02:06,869 --> 00:02:11,324 of severe pain, crippled inability to really work, 52 00:02:11,724 --> 00:02:13,585 really in systemic poverty. 53 00:02:13,885 --> 00:02:15,885 And so that's when she started thinking we 54 00:02:15,885 --> 00:02:17,585 have to do something. We have to help. 55 00:02:17,724 --> 00:02:20,284 And so she started, first Project Share, which 56 00:02:20,284 --> 00:02:22,520 is part of Save One Life. And project 57 00:02:22,520 --> 00:02:23,900 share is a humanitarian 58 00:02:24,360 --> 00:02:26,379 aid providing donated factor, 59 00:02:26,759 --> 00:02:27,659 donated medication 60 00:02:28,120 --> 00:02:30,599 to those in need in developing countries because 61 00:02:30,599 --> 00:02:32,599 they had no medication, and those are from 62 00:02:32,599 --> 00:02:34,155 donations in The United States. 63 00:02:34,634 --> 00:02:37,194 And then through the course of, doing further 64 00:02:37,194 --> 00:02:39,534 training, she went to Pakistan. And in Pakistan 65 00:02:39,675 --> 00:02:41,215 is when she encountered, 66 00:02:42,314 --> 00:02:45,435 again, the same situation, different country, but developing 67 00:02:45,435 --> 00:02:48,389 countries have very similar issues in terms of 68 00:02:48,550 --> 00:02:50,569 no treatment, no access to treatment, 69 00:02:50,870 --> 00:02:53,669 difficulty to get education, living in and just 70 00:02:53,669 --> 00:02:55,689 crushing poverty. And so 71 00:02:55,990 --> 00:02:59,129 in, Pakistan, she met a father who said, 72 00:02:59,430 --> 00:03:01,669 if I could just have $20 a month, 73 00:03:01,669 --> 00:03:03,735 I would be able to send my child 74 00:03:03,735 --> 00:03:04,794 to get an education 75 00:03:05,415 --> 00:03:07,275 to get out of the systemic poverty. 76 00:03:07,655 --> 00:03:10,155 Because, basically, if you don't have an education, 77 00:03:10,294 --> 00:03:12,294 you are forced into manual labor, and that's 78 00:03:12,294 --> 00:03:14,055 what you can do. But because you have 79 00:03:14,055 --> 00:03:14,555 hemophilia 80 00:03:14,855 --> 00:03:17,254 and you haven't had any treatment, you're crippled 81 00:03:17,254 --> 00:03:18,395 and having difficulty 82 00:03:18,939 --> 00:03:20,620 being able to do any kind of manual 83 00:03:20,620 --> 00:03:22,139 labor. Should that put you in this cycle 84 00:03:22,139 --> 00:03:24,139 you can't get out of? So by being 85 00:03:24,139 --> 00:03:26,479 able to provide an opportunity to get education, 86 00:03:26,860 --> 00:03:28,219 it was a way to kind of get 87 00:03:28,219 --> 00:03:30,699 out of that poverty. And so with that, 88 00:03:30,699 --> 00:03:33,144 Laurie Kelly said, let's let's do something. Let's 89 00:03:33,144 --> 00:03:35,064 start this. And so she started Save One 90 00:03:35,064 --> 00:03:36,824 Life. Wow. So that that was kind of 91 00:03:36,824 --> 00:03:38,284 the spark of its creation. 92 00:03:38,985 --> 00:03:40,504 Before I pass it over to you, Debbie, 93 00:03:40,504 --> 00:03:42,104 I guess, Cindy, maybe just kind of tell 94 00:03:42,104 --> 00:03:43,644 us where we're at today 95 00:03:43,944 --> 00:03:45,544 in terms of the landscape and and, like, 96 00:03:45,544 --> 00:03:47,144 kind of the work Save One Life has 97 00:03:47,144 --> 00:03:48,000 been able to do. 98 00:03:49,120 --> 00:03:52,259 Today, Save One Life has over 2,500, 99 00:03:52,879 --> 00:03:55,680 individuals that has been helped to really create 100 00:03:55,680 --> 00:03:57,759 a better life for themselves and their family. 101 00:03:57,759 --> 00:04:00,319 We've worked in 18 different countries and really 102 00:04:00,319 --> 00:04:02,240 provided that assistance. So we hear stories all 103 00:04:02,240 --> 00:04:03,925 the time from them, and we really it 104 00:04:03,925 --> 00:04:05,944 just warms our heart to hear those stories 105 00:04:06,245 --> 00:04:08,245 that, Sable Life has made a difference. So 106 00:04:08,245 --> 00:04:10,344 many of the kids started in our sponsorship 107 00:04:10,485 --> 00:04:13,044 program, which is where we provide sponsorships to 108 00:04:13,044 --> 00:04:14,664 children, one on one sponsorships 109 00:04:15,205 --> 00:04:17,605 to help them directly. So we provide direct 110 00:04:17,605 --> 00:04:18,665 financial assistance 111 00:04:19,019 --> 00:04:21,259 through our program partner, which is a local 112 00:04:21,259 --> 00:04:24,379 chapter to that family, to that individual. So 113 00:04:24,379 --> 00:04:26,620 if someone donates, they actually the money goes 114 00:04:26,620 --> 00:04:29,740 directly to that, person, that child. Mhmm. And 115 00:04:29,740 --> 00:04:30,220 so, 116 00:04:30,620 --> 00:04:32,555 a lot of those have gone through that 117 00:04:32,555 --> 00:04:34,735 sponsorship program and then gone through our scholarship 118 00:04:34,875 --> 00:04:37,194 program where as young adults have been able 119 00:04:37,194 --> 00:04:38,574 to continue their education 120 00:04:39,035 --> 00:04:41,115 and to really, like I mentioned, get out 121 00:04:41,115 --> 00:04:43,595 of that cycle of poverty by being educated 122 00:04:43,595 --> 00:04:45,529 and be able to get good jobs. And 123 00:04:45,529 --> 00:04:47,769 that's a scholarship program that we do. And 124 00:04:47,769 --> 00:04:50,329 then we also do grants for families, a 125 00:04:50,329 --> 00:04:53,050 lot of single moms trying to create new 126 00:04:53,050 --> 00:04:55,610 businesses and and start. So really we've seen, 127 00:04:55,930 --> 00:04:57,949 Save One Life is that twenty fifth anniversary 128 00:04:58,009 --> 00:04:59,050 in 2026. 129 00:04:59,050 --> 00:05:00,269 So we've seen Wow. 130 00:05:00,735 --> 00:05:02,654 A lot of changes over the years, and 131 00:05:02,654 --> 00:05:04,675 I'll we're very excited to, 132 00:05:05,294 --> 00:05:07,854 all that has happened for those individuals that 133 00:05:07,854 --> 00:05:10,095 we've supported and, really, all of you have 134 00:05:10,095 --> 00:05:13,000 supported in making this happen. Yeah. Yeah. And 135 00:05:13,000 --> 00:05:13,899 I didn't wanna, 136 00:05:14,519 --> 00:05:16,439 brush over. You did mention earlier in the 137 00:05:16,439 --> 00:05:18,139 podcast that you have a son of hemophilia. 138 00:05:18,199 --> 00:05:19,579 Can you tell us about them? 139 00:05:20,120 --> 00:05:21,560 Sure. I have a son. His name is 140 00:05:21,560 --> 00:05:23,899 Cade, and he is 22 years old, and 141 00:05:23,959 --> 00:05:25,740 he was born with severe hemophilia 142 00:05:26,120 --> 00:05:28,964 a. And, yeah, he's doing great. He's in 143 00:05:28,964 --> 00:05:31,365 college and, finishing up, but it was a 144 00:05:31,605 --> 00:05:33,285 you know, as as most people, it was 145 00:05:33,285 --> 00:05:35,925 a very scary start to his life with 146 00:05:35,925 --> 00:05:38,165 that journey and trying to figure out how 147 00:05:38,165 --> 00:05:39,605 to get him the treatment and what he 148 00:05:39,605 --> 00:05:42,050 needs. And I will say that I went 149 00:05:42,050 --> 00:05:44,689 to, Laurie I heard Laurie Kelly speak when 150 00:05:44,689 --> 00:05:46,610 my son was an infant, and it it 151 00:05:46,610 --> 00:05:48,930 really gave me hope that, oh my gosh, 152 00:05:48,930 --> 00:05:50,870 we do have access to this medication. 153 00:05:51,329 --> 00:05:53,250 He's going to be okay. We're just gonna 154 00:05:53,250 --> 00:05:54,870 work through this. And really 155 00:05:55,185 --> 00:05:57,444 seeing people in other countries not so fortunate 156 00:05:57,504 --> 00:05:59,824 really resonated with me and made me feel 157 00:05:59,824 --> 00:06:01,745 like, alright. You know, we can make this 158 00:06:01,745 --> 00:06:03,504 work. And my son's been able to really 159 00:06:03,665 --> 00:06:06,225 been very fortunate to live on, really a 160 00:06:06,225 --> 00:06:07,665 life where he's been able to do a 161 00:06:07,665 --> 00:06:08,404 lot of things. 162 00:06:08,729 --> 00:06:10,329 Yeah. And I think it's also a reminder 163 00:06:10,329 --> 00:06:12,089 of how the Coalition of Hemophilia be, the 164 00:06:12,089 --> 00:06:14,509 work we do has has ripple effects. Right? 165 00:06:14,889 --> 00:06:17,529 Absolutely. Absolutely. I think it gives people hope 166 00:06:17,529 --> 00:06:19,389 and makes people feel like they're capable 167 00:06:19,689 --> 00:06:21,769 and that this does not defines who it 168 00:06:21,769 --> 00:06:23,370 does not define who you are. It's just 169 00:06:23,370 --> 00:06:24,384 a part of who you are. And I 170 00:06:24,384 --> 00:06:25,365 think that's a very 171 00:06:26,225 --> 00:06:27,444 important delineation. 172 00:06:27,904 --> 00:06:29,504 Yeah. Debbie, I was gonna throw it over 173 00:06:29,504 --> 00:06:31,264 to you now because there's if we just 174 00:06:31,264 --> 00:06:33,045 got the macro view, right, 175 00:06:33,425 --> 00:06:35,105 tell us tell us about the program work 176 00:06:35,105 --> 00:06:35,925 you do globally. 177 00:06:36,639 --> 00:06:37,139 Definitely. 178 00:06:37,599 --> 00:06:39,620 First, I'd like to concur with with Cindy. 179 00:06:40,319 --> 00:06:41,220 That's when, 180 00:06:41,599 --> 00:06:43,360 you know, I received the news too by 181 00:06:43,360 --> 00:06:46,160 listening to Lori Kelly and seeing the horrific 182 00:06:46,160 --> 00:06:46,660 pictures 183 00:06:47,279 --> 00:06:48,259 of of children, 184 00:06:49,199 --> 00:06:51,134 you know, with just cantaloupe 185 00:06:51,595 --> 00:06:53,214 with enlarged joints 186 00:06:53,834 --> 00:06:55,535 and and just excessive bleeding. 187 00:06:55,915 --> 00:06:57,995 And I too like Cindy has a have 188 00:06:57,995 --> 00:07:00,334 a son who's now 31 with severe hemophilia. 189 00:07:00,955 --> 00:07:02,475 And I couldn't imagine what that would be 190 00:07:02,475 --> 00:07:05,459 like, the helplessness a parent would feel 191 00:07:05,759 --> 00:07:08,160 not being able to help them. And so 192 00:07:08,160 --> 00:07:09,759 that's when I got involved too. I've been 193 00:07:09,759 --> 00:07:11,939 sponsoring three children for the past ten years. 194 00:07:12,480 --> 00:07:14,240 And then to bring you up to date, 195 00:07:14,240 --> 00:07:15,759 what I get to do now for a 196 00:07:15,759 --> 00:07:17,300 living is to identify 197 00:07:17,824 --> 00:07:18,964 people around the country 198 00:07:19,345 --> 00:07:20,884 that feel just as passionate 199 00:07:21,425 --> 00:07:24,245 about making a significant change in somebody's life. 200 00:07:24,544 --> 00:07:26,464 And so, we have a program that's called 201 00:07:26,464 --> 00:07:27,604 the ambassador program. 202 00:07:28,144 --> 00:07:30,829 And just as of last month at the, 203 00:07:31,069 --> 00:07:33,889 bleeding disorder conference, you know, we train six 204 00:07:34,349 --> 00:07:36,750 ambassadors that are now gonna go out and 205 00:07:36,750 --> 00:07:37,729 tell the stories 206 00:07:38,509 --> 00:07:40,849 and get people involved passionately. 207 00:07:41,550 --> 00:07:44,430 And and and equally important, to help people 208 00:07:44,430 --> 00:07:46,795 understand how they can help. Because I I 209 00:07:46,795 --> 00:07:49,115 think, Kai, that's the biggest problem. Mhmm. 210 00:07:49,514 --> 00:07:50,014 People 211 00:07:50,475 --> 00:07:52,714 can see this term that only twenty five 212 00:07:52,714 --> 00:07:54,175 percent of the people in the world 213 00:07:54,555 --> 00:07:56,175 receive adequate factor, 214 00:07:56,714 --> 00:07:58,795 and they could know well. We've identified about 215 00:07:58,795 --> 00:08:01,169 four hundred thousand, so that's about three hundred 216 00:08:01,169 --> 00:08:03,350 thousand people who are living day to day 217 00:08:03,970 --> 00:08:07,089 without the medication that that they need. Mhmm. 218 00:08:07,089 --> 00:08:09,250 And so number one is with the awareness 219 00:08:09,250 --> 00:08:11,829 of really what the situation is through storytelling, 220 00:08:11,970 --> 00:08:13,889 bring it to life, and then letting people 221 00:08:13,889 --> 00:08:16,605 know you can you can help by sponsoring 222 00:08:16,605 --> 00:08:19,644 a child Yeah. For $35 a month. Wow. 223 00:08:19,644 --> 00:08:21,805 That Yeah. Yeah. I don't know. Tell tell 224 00:08:21,805 --> 00:08:23,425 us more about this sponsorship program. 225 00:08:23,884 --> 00:08:24,384 Certainly. 226 00:08:24,925 --> 00:08:27,584 Through their sponsorships, and like Cindy said, we've 227 00:08:27,644 --> 00:08:29,824 we've sponsored over 2,500 228 00:08:30,269 --> 00:08:32,269 children, you know, throughout the life of this 229 00:08:32,269 --> 00:08:32,769 organization. 230 00:08:33,629 --> 00:08:35,870 And what it does, it really does help 231 00:08:35,870 --> 00:08:37,889 pay for those extra expenses, 232 00:08:38,990 --> 00:08:41,710 that would get involved with somebody's ability to 233 00:08:41,710 --> 00:08:44,370 even get to a hemophilia treatment center. 234 00:08:44,684 --> 00:08:45,985 Sometimes they have to travel 235 00:08:46,365 --> 00:08:47,424 for for hours, 236 00:08:48,044 --> 00:08:49,105 with inadequate 237 00:08:49,725 --> 00:08:50,225 transportation. 238 00:08:51,245 --> 00:08:53,085 And so or sometimes it's to help them 239 00:08:53,085 --> 00:08:55,184 go to school with with school supplies. 240 00:08:56,445 --> 00:08:58,705 And, that that $35 241 00:08:59,379 --> 00:09:00,199 makes a difference 242 00:09:01,299 --> 00:09:03,399 between having, you know, a life 243 00:09:04,019 --> 00:09:04,419 that, 244 00:09:05,459 --> 00:09:07,699 is more manageable. It improves the quality of 245 00:09:07,699 --> 00:09:08,199 life. 246 00:09:08,579 --> 00:09:10,339 Yeah. And I guess for from your guys' 247 00:09:10,339 --> 00:09:12,740 perspective, like, why does that it's like direct 248 00:09:12,740 --> 00:09:14,625 approach. Right? Like, one to one. Why does 249 00:09:14,625 --> 00:09:15,904 that matter so much? Is it does that 250 00:09:15,904 --> 00:09:18,065 make your organization unique in that sense? Yes. 251 00:09:18,065 --> 00:09:19,684 I would say it does make our organization 252 00:09:19,904 --> 00:09:20,884 unique because 253 00:09:21,665 --> 00:09:22,325 we provide 254 00:09:22,865 --> 00:09:24,085 through all the donations 255 00:09:24,465 --> 00:09:26,304 directly. So you can go on the website 256 00:09:26,304 --> 00:09:28,785 and actually choose a child, and that's the 257 00:09:28,785 --> 00:09:32,110 child you are are definitely connected to. Mhmm. 258 00:09:32,110 --> 00:09:34,669 And then the funds go through that program 259 00:09:34,669 --> 00:09:37,230 partner. I mentioned that local chapter directly to 260 00:09:37,230 --> 00:09:38,449 that child and family. 261 00:09:38,750 --> 00:09:41,149 So you know what you're donating is making 262 00:09:41,149 --> 00:09:43,965 a a direct impact to those families. You 263 00:09:43,965 --> 00:09:45,904 know, when Laurie Kelly started the organization, 264 00:09:46,764 --> 00:09:48,684 she picked the name Save One Life from, 265 00:09:49,004 --> 00:09:50,465 Schindler's List because, 266 00:09:51,164 --> 00:09:52,924 in there, he had said, if you save 267 00:09:52,924 --> 00:09:55,085 one life, you save the world and really 268 00:09:55,085 --> 00:09:57,245 wanted to focus on one child at a 269 00:09:57,245 --> 00:09:59,409 time. And that's how Save One Life, the 270 00:09:59,409 --> 00:10:00,950 name was born from that. 271 00:10:01,330 --> 00:10:03,649 Wonderful. Wonderful. And and, yeah, I guess, you 272 00:10:03,649 --> 00:10:04,149 know, 273 00:10:04,529 --> 00:10:06,850 the education piece, right, is so important, like, 274 00:10:06,850 --> 00:10:08,870 just making people more aware 275 00:10:09,330 --> 00:10:11,730 of of of what they're living with or 276 00:10:11,730 --> 00:10:14,304 or making people aware of what others are 277 00:10:14,304 --> 00:10:16,625 living with. Right? I'm not somebody who has 278 00:10:16,625 --> 00:10:19,024 hemophilia or is connected to someone who has 279 00:10:19,024 --> 00:10:20,945 it, but I'm now connected to all of 280 00:10:20,945 --> 00:10:23,904 you, right, through through this beautiful organization. And 281 00:10:23,904 --> 00:10:26,225 I think maybe are there any stories that 282 00:10:26,225 --> 00:10:27,769 are leaping out of of 283 00:10:28,230 --> 00:10:30,649 maybe a child or a family who who 284 00:10:31,029 --> 00:10:33,670 has had a positive impact via Save One 285 00:10:33,670 --> 00:10:35,269 Life? I can tell you a story that 286 00:10:35,269 --> 00:10:38,070 I just shared yesterday, actually, with the staff. 287 00:10:38,149 --> 00:10:40,330 We heard from a young gentleman in India 288 00:10:40,764 --> 00:10:42,365 who wanted to share with us that he 289 00:10:42,365 --> 00:10:43,904 just got his accounting degree 290 00:10:44,365 --> 00:10:45,245 and that he, 291 00:10:45,725 --> 00:10:47,584 you know, he has severe hemophilia. 292 00:10:48,284 --> 00:10:50,384 He was in our sponsorship program 293 00:10:50,764 --> 00:10:53,245 and then his scholarship program to be able 294 00:10:53,245 --> 00:10:55,664 to get the education. And now he's actually 295 00:10:56,070 --> 00:10:58,009 working at the chapter in India 296 00:10:58,389 --> 00:11:00,710 to help with Save One Life, to help 297 00:11:00,710 --> 00:11:01,210 those. 298 00:11:01,670 --> 00:11:03,269 So he said, I'm doing this because I 299 00:11:03,269 --> 00:11:05,990 want to return all the assistance and help 300 00:11:05,990 --> 00:11:07,910 that I got. But we see this time 301 00:11:07,910 --> 00:11:08,809 and time again, 302 00:11:09,584 --> 00:11:11,845 you know, individuals who started in our sponsorship 303 00:11:11,904 --> 00:11:14,544 program and able to really better their lives. 304 00:11:14,544 --> 00:11:16,865 Now they're able to get those degrees, which 305 00:11:16,865 --> 00:11:19,584 help them to lead more productive lives despite 306 00:11:19,584 --> 00:11:21,985 the fact that they've had multiple bleeds, no 307 00:11:21,985 --> 00:11:24,470 medication when they were young and all those 308 00:11:24,470 --> 00:11:26,490 complications that come with that. Yeah. 309 00:11:26,870 --> 00:11:29,110 And then another story about Project Cheryl, just 310 00:11:29,110 --> 00:11:31,190 to mention is we had a a young 311 00:11:31,190 --> 00:11:33,750 mother whose son had a brain bleed and, 312 00:11:34,149 --> 00:11:35,750 didn't know what it was because a lot 313 00:11:35,750 --> 00:11:37,049 of times you don't have 314 00:11:37,455 --> 00:11:38,195 local hematologists 315 00:11:38,654 --> 00:11:42,254 that understand hemophilia at all. And so really, 316 00:11:42,254 --> 00:11:44,274 he was he was not doing well. 317 00:11:44,654 --> 00:11:47,615 And finally, she connected with the local chapter 318 00:11:47,615 --> 00:11:50,195 who connected through us to donate medication. 319 00:11:50,495 --> 00:11:52,355 And because of the donated medication, 320 00:11:53,019 --> 00:11:54,700 they were able to give that to him. 321 00:11:54,700 --> 00:11:57,100 And now he's, you know, seven years old 322 00:11:57,100 --> 00:11:59,339 and and doing very well and, 323 00:12:00,059 --> 00:12:02,139 able to just, you know, go to school 324 00:12:02,139 --> 00:12:03,980 and do the the same things that we, 325 00:12:04,299 --> 00:12:05,740 try to do in this country. So I 326 00:12:05,740 --> 00:12:07,995 think that project Share made a huge difference, 327 00:12:07,995 --> 00:12:10,095 I think, really truly between life and death. 328 00:12:10,235 --> 00:12:10,554 Mhmm. 329 00:12:11,514 --> 00:12:13,595 And then one other short story I'll share 330 00:12:13,595 --> 00:12:14,414 as a gentleman, 331 00:12:15,034 --> 00:12:17,274 we had in Fiji, there's no medication there, 332 00:12:17,274 --> 00:12:19,195 and we were able to get medication to 333 00:12:19,195 --> 00:12:20,095 him as well. 334 00:12:21,470 --> 00:12:23,309 And then a fourth one on the the, 335 00:12:24,029 --> 00:12:26,670 the grants I'll mention is one of our 336 00:12:26,670 --> 00:12:29,790 program partners, mentioned to us that a young 337 00:12:29,790 --> 00:12:30,290 mother, 338 00:12:30,670 --> 00:12:32,850 we had provided assistance by 339 00:12:33,309 --> 00:12:33,809 providing 340 00:12:34,304 --> 00:12:37,345 computer equipment for her to do a business. 341 00:12:37,345 --> 00:12:39,664 She was in a very remote area and, 342 00:12:39,904 --> 00:12:41,504 our program partner went to visit her a 343 00:12:41,504 --> 00:12:43,184 year and a half later and it's like 344 00:12:43,184 --> 00:12:46,225 a night and day. The woman was shy 345 00:12:46,225 --> 00:12:48,404 and sort of very seemed very 346 00:12:48,940 --> 00:12:51,179 insecure and and didn't talk much at the 347 00:12:51,179 --> 00:12:53,519 first encounter. And the second one, she was 348 00:12:53,659 --> 00:12:56,379 running the business, doing very well. She had 349 00:12:56,379 --> 00:12:58,220 a lot of self confidence. And so it's 350 00:12:58,220 --> 00:13:01,500 not just the financial component. It's really helping 351 00:13:01,500 --> 00:13:04,684 them feel like a more fulfilled life, more 352 00:13:04,684 --> 00:13:07,264 self confidence, feel like someone cares about them, 353 00:13:07,565 --> 00:13:10,445 someone really believed in them, and I think 354 00:13:10,445 --> 00:13:12,365 that's really significant as well. 355 00:13:13,245 --> 00:13:14,684 And one other thing I'll mention is we 356 00:13:14,684 --> 00:13:17,139 have a lot of, single moms because in 357 00:13:17,139 --> 00:13:19,299 a lot of these countries, the husbands may 358 00:13:19,299 --> 00:13:20,759 leave because they feel like 359 00:13:21,059 --> 00:13:22,899 the child is cursed or the mom is 360 00:13:22,899 --> 00:13:25,779 cursed. Mhmm. The women are ostracized from the 361 00:13:25,779 --> 00:13:28,579 community because they're viewed as cursed. And so 362 00:13:28,579 --> 00:13:30,579 it's these women are left to try to 363 00:13:30,579 --> 00:13:33,595 raise children on their own without really any 364 00:13:33,595 --> 00:13:35,995 support and help. So being able to provide 365 00:13:35,995 --> 00:13:38,475 these grants is really life changing for them 366 00:13:38,475 --> 00:13:40,794 to provide for their family. And then obviously, 367 00:13:40,794 --> 00:13:43,615 in conjunction with that, the sponsorship program allowing 368 00:13:43,879 --> 00:13:45,879 the child to also thrive and be able 369 00:13:45,879 --> 00:13:47,879 to get out of that systemic poverty. You 370 00:13:47,879 --> 00:13:48,919 know, there's a few things I heard in 371 00:13:48,919 --> 00:13:51,799 there. There's this idea of community, not only 372 00:13:51,799 --> 00:13:54,679 helping you financially or just pragmatically with medication. 373 00:13:54,679 --> 00:13:57,585 Right? But it's that confidence. It's that ability 374 00:13:57,585 --> 00:13:59,904 that the mental health aspect of this, right, 375 00:13:59,904 --> 00:14:01,585 which is such a huge piece of to 376 00:14:01,585 --> 00:14:04,565 navigate whether you're the mother who's scared because 377 00:14:04,625 --> 00:14:06,625 they have the child or you're a friend 378 00:14:06,625 --> 00:14:07,845 or if you have it yourself. 379 00:14:08,144 --> 00:14:09,985 We know in the coalition, like, there's a 380 00:14:09,985 --> 00:14:11,125 so much talk about 381 00:14:11,589 --> 00:14:12,970 the mental health component 382 00:14:13,269 --> 00:14:15,509 of living with or have or living with 383 00:14:15,509 --> 00:14:17,990 someone who has this. Right? So just the 384 00:14:17,990 --> 00:14:20,629 the support, that net, like, just having that 385 00:14:20,629 --> 00:14:21,289 net there 386 00:14:21,750 --> 00:14:24,230 is providing so much relief beyond just, you 387 00:14:24,230 --> 00:14:26,504 know, medication and and financial. So it's just 388 00:14:26,585 --> 00:14:28,264 it's wonderful to hear. And I think the 389 00:14:28,264 --> 00:14:30,105 other piece I was hearing is when when 390 00:14:30,105 --> 00:14:32,024 you give back. Right? So I've received, and 391 00:14:32,024 --> 00:14:33,705 now I'm giving back. And I think that's 392 00:14:33,705 --> 00:14:35,085 really the coalition, 393 00:14:35,945 --> 00:14:36,445 like, 394 00:14:36,985 --> 00:14:39,225 help our members give. But then let's talk 395 00:14:39,225 --> 00:14:41,164 about that advocacy piece because 396 00:14:41,660 --> 00:14:43,100 there are gonna be a lot of changes 397 00:14:43,100 --> 00:14:45,740 coming over the next couple years, and as 398 00:14:45,740 --> 00:14:48,059 things will probably get more difficult for a 399 00:14:48,059 --> 00:14:50,080 lot of people. So now is the time 400 00:14:50,299 --> 00:14:52,059 to come together as a community. And I 401 00:14:52,059 --> 00:14:54,059 guess maybe, Debbie, start with you. Just talk 402 00:14:54,059 --> 00:14:55,519 to us about advocacy, and 403 00:14:55,865 --> 00:14:57,944 maybe there's a different word, but the stigma 404 00:14:57,944 --> 00:14:59,884 behind it and what was the fire 405 00:15:00,424 --> 00:15:02,764 that led you down this path that maybe 406 00:15:02,824 --> 00:15:04,345 a parent out there could hear and be 407 00:15:04,345 --> 00:15:06,424 like, hey. May maybe a small step in 408 00:15:06,424 --> 00:15:08,204 that direction could have a huge impact. 409 00:15:08,580 --> 00:15:09,320 Oh, absolutely. 410 00:15:09,860 --> 00:15:11,000 I mean, whenever 411 00:15:11,700 --> 00:15:14,580 you're acting in an altruistic way, it is 412 00:15:14,580 --> 00:15:17,700 such a win win mindset because the person 413 00:15:17,700 --> 00:15:18,759 in The United States 414 00:15:19,379 --> 00:15:21,540 can deal with their own feelings of we 415 00:15:21,540 --> 00:15:23,480 all sometimes feel overwhelmed 416 00:15:24,345 --> 00:15:27,144 by living with this condition and and feel 417 00:15:27,144 --> 00:15:27,644 helpless 418 00:15:28,105 --> 00:15:30,424 to affect any type of change. And so 419 00:15:30,424 --> 00:15:32,584 for the person giving from The United States, 420 00:15:32,584 --> 00:15:35,245 from anyone listening from the coalition b, 421 00:15:35,705 --> 00:15:37,164 you have a direct avenue 422 00:15:37,950 --> 00:15:39,570 to to feel more 423 00:15:40,190 --> 00:15:42,129 empowered I mean, feel more powerful 424 00:15:42,509 --> 00:15:43,730 by empowering someone 425 00:15:44,110 --> 00:15:46,450 Mhmm. In somewhere else in The United States. 426 00:15:46,990 --> 00:15:48,610 And then that particular person 427 00:15:49,070 --> 00:15:51,250 now feels heard and seen. 428 00:15:51,565 --> 00:15:53,404 Mhmm. And it's just a cumulative effect like 429 00:15:53,404 --> 00:15:54,925 you talked about the other you know, you 430 00:15:54,925 --> 00:15:57,884 talked about recently. Mhmm. And so it's it's 431 00:15:57,884 --> 00:16:00,305 the importance of, being there for other people. 432 00:16:00,685 --> 00:16:01,745 And as you said, 433 00:16:02,205 --> 00:16:02,945 right now, 434 00:16:03,725 --> 00:16:05,805 we get to have an avenue to change 435 00:16:05,805 --> 00:16:06,865 somebody's life 436 00:16:07,860 --> 00:16:09,460 and help us. It's the thing that we 437 00:16:09,460 --> 00:16:10,519 have control over. 438 00:16:11,059 --> 00:16:13,220 It's how we spend our time, money, and 439 00:16:13,220 --> 00:16:13,720 resources. 440 00:16:14,100 --> 00:16:16,740 Mhmm. So advocacy is definitely a win win 441 00:16:16,740 --> 00:16:19,379 for both people. Yeah. Debbie, is there anything 442 00:16:19,460 --> 00:16:20,894 or sorry. Cindy, is there anything you'd like 443 00:16:20,894 --> 00:16:22,495 to add to that? I think, Debbie, that 444 00:16:22,495 --> 00:16:24,815 was very well said. You know, kind of 445 00:16:24,815 --> 00:16:27,215 to share how I got involved and what 446 00:16:27,215 --> 00:16:29,475 was a spark for me is I actually, 447 00:16:29,855 --> 00:16:32,035 I heard Laurie speak that I mentioned already. 448 00:16:32,289 --> 00:16:32,529 But, 449 00:16:33,090 --> 00:16:35,250 I was involved in a conference where we 450 00:16:35,250 --> 00:16:37,730 had, Megan from Nigeria come, and this is 451 00:16:37,730 --> 00:16:40,149 when I was working at the Arizona Hemophilia 452 00:16:40,210 --> 00:16:43,009 Association doing something different, but she talked about 453 00:16:43,009 --> 00:16:44,924 how she had to carry her son for 454 00:16:45,004 --> 00:16:47,004 two miles on her back. And this wasn't 455 00:16:47,004 --> 00:16:48,705 an infant. This was like a teenager 456 00:16:49,164 --> 00:16:51,725 because he couldn't walk. And that's really sparked 457 00:16:51,725 --> 00:16:53,424 me and the fact that we could 458 00:16:53,964 --> 00:16:56,684 really all come together. We're one global bleeding 459 00:16:56,684 --> 00:16:57,664 disorders family, 460 00:16:58,040 --> 00:17:00,040 and I feel like we can't help everyone, 461 00:17:00,040 --> 00:17:01,960 but we can help our own brother, you 462 00:17:01,960 --> 00:17:03,740 know, blood brothers and blood sisters. 463 00:17:04,119 --> 00:17:06,119 And so I like to Debbie's point, I 464 00:17:06,119 --> 00:17:08,940 think it that altruism makes you feel like 465 00:17:09,240 --> 00:17:11,480 I can do something about this. I can 466 00:17:11,480 --> 00:17:13,420 help someone help themselves. 467 00:17:13,945 --> 00:17:16,105 And I think that's powerful for us, and 468 00:17:16,105 --> 00:17:18,265 I think it's powerful for them. And in 469 00:17:18,265 --> 00:17:20,505 this world of uncertainty, I think that that 470 00:17:20,505 --> 00:17:22,744 is certain. I think that the funds that 471 00:17:22,744 --> 00:17:25,144 you provide and the assistance you provide to 472 00:17:25,144 --> 00:17:26,445 support those individuals 473 00:17:26,950 --> 00:17:29,269 that really need it within our bleeding disorders 474 00:17:29,269 --> 00:17:31,590 family, I do make a huge difference for 475 00:17:31,590 --> 00:17:34,070 them. Yeah. Yeah. Well, it's, you know, it's 476 00:17:34,070 --> 00:17:34,730 an incredible 477 00:17:35,109 --> 00:17:37,350 vision, and, obviously, you guys are having such 478 00:17:37,350 --> 00:17:39,190 a huge impact on so many people. So 479 00:17:39,190 --> 00:17:40,815 I guess talk to us about what's coming 480 00:17:40,815 --> 00:17:42,815 up next. Like, what's giving you hope, in 481 00:17:42,815 --> 00:17:45,214 in the foundation and other new initiatives? Like, 482 00:17:45,214 --> 00:17:46,255 just talk to us a little bit about 483 00:17:46,255 --> 00:17:47,855 the future. Well, Debbie, if you wanna start 484 00:17:47,855 --> 00:17:49,694 with the ambassador program that you kind of 485 00:17:49,694 --> 00:17:52,335 mentioned already, but that's something new, and we're 486 00:17:52,335 --> 00:17:54,410 really excited about it because it allows us 487 00:17:54,410 --> 00:17:56,730 to spread our, you know, message even further. 488 00:17:56,730 --> 00:17:58,009 So, Debbie, do you want to touch on 489 00:17:58,009 --> 00:18:00,890 that again? Oh, definitely. So there's a there's 490 00:18:00,890 --> 00:18:04,190 so much excitement because there's some synergy now. 491 00:18:04,329 --> 00:18:06,410 And and now we have we have the 492 00:18:06,410 --> 00:18:07,549 stories of 493 00:18:07,994 --> 00:18:09,295 strife and success, 494 00:18:09,835 --> 00:18:11,454 and now we, you know, 495 00:18:11,755 --> 00:18:13,615 empowered other individuals to go 496 00:18:13,994 --> 00:18:15,454 and, you know, just 497 00:18:16,154 --> 00:18:19,295 just tell the stories and tell people specifically 498 00:18:19,355 --> 00:18:20,309 how they can help. 499 00:18:20,870 --> 00:18:22,870 It's just, I can see it's just gonna 500 00:18:22,870 --> 00:18:24,950 get it's gonna grow and grow, and pretty 501 00:18:24,950 --> 00:18:27,130 soon we're gonna have so many people 502 00:18:27,830 --> 00:18:30,390 not just going to bleeding disorder conferences, which 503 00:18:30,390 --> 00:18:31,610 is extremely important, 504 00:18:32,150 --> 00:18:33,529 to reach out to our community. 505 00:18:33,990 --> 00:18:35,850 So as Cindy said that they can 506 00:18:36,244 --> 00:18:37,684 they can reach out and figure out how 507 00:18:37,684 --> 00:18:39,545 to work, how to help their global 508 00:18:39,845 --> 00:18:40,744 family members. 509 00:18:41,285 --> 00:18:43,525 But then but everybody has a circle of 510 00:18:43,525 --> 00:18:46,644 influence too. And so these individuals will talk 511 00:18:46,644 --> 00:18:47,144 to 512 00:18:47,605 --> 00:18:50,340 people where they work or organizations they belong 513 00:18:50,340 --> 00:18:52,580 to. Mhmm. And so I I can see 514 00:18:52,580 --> 00:18:54,039 that this is going to mushroom 515 00:18:54,820 --> 00:18:55,320 into 516 00:18:55,700 --> 00:18:57,480 a real sustainable system. 517 00:18:57,859 --> 00:19:00,099 Yeah. And so we can always know that, 518 00:19:00,099 --> 00:19:02,119 you know, the ideas are gonna be spread. 519 00:19:02,259 --> 00:19:04,519 Yeah. And people figure out how to help. 520 00:19:04,845 --> 00:19:06,924 That's great. Well, I guess, tell our listeners 521 00:19:06,924 --> 00:19:08,204 where where where can they get in touch 522 00:19:08,204 --> 00:19:10,444 with you? Like, website or go through that 523 00:19:10,444 --> 00:19:11,265 with us. 524 00:19:12,125 --> 00:19:13,644 Sure. They can get in touch with us 525 00:19:13,644 --> 00:19:16,144 by going to save1life.net, 526 00:19:16,444 --> 00:19:18,525 to our website, and just learn more about 527 00:19:18,525 --> 00:19:20,980 the different programs we provide and and how 528 00:19:20,980 --> 00:19:23,460 they wanna get involved. We also have committees. 529 00:19:23,460 --> 00:19:25,619 I mentioned the grants, and I mentioned the 530 00:19:25,619 --> 00:19:27,940 scholarships. We have a committee that decides, you 531 00:19:27,940 --> 00:19:30,279 know, they have to apply for those scholarships 532 00:19:30,339 --> 00:19:31,940 and for those grants. And then we have 533 00:19:31,940 --> 00:19:34,394 a committee that decides if they're approved or 534 00:19:34,394 --> 00:19:36,154 not, and I think that's a really interesting 535 00:19:36,154 --> 00:19:38,474 way to get involved and and learn more 536 00:19:38,474 --> 00:19:41,355 about what's going on globally. And then also, 537 00:19:41,514 --> 00:19:43,914 to like we mentioned, the $35 a month 538 00:19:43,914 --> 00:19:44,414 sponsorship, 539 00:19:44,794 --> 00:19:46,494 if you wanna get involved in the ambassador 540 00:19:46,714 --> 00:19:49,349 program. And next year's our twenty fifth anniversary, 541 00:19:49,349 --> 00:19:52,710 so we're really excited, and we're looking, forward 542 00:19:52,710 --> 00:19:55,109 to doing a couple of celebrations next year 543 00:19:55,109 --> 00:19:56,869 and excited to share those with you once 544 00:19:56,869 --> 00:19:59,430 we have those all planned. Yeah. So please, 545 00:19:59,589 --> 00:20:01,430 come down the website and learn more about 546 00:20:01,430 --> 00:20:02,089 the organization. 547 00:20:02,835 --> 00:20:04,434 What I would add is this, is that, 548 00:20:05,474 --> 00:20:08,214 Save One Life is really providing an opportunity 549 00:20:09,075 --> 00:20:11,015 for us to be good humans, 550 00:20:11,954 --> 00:20:13,634 for us to take the time to notice 551 00:20:13,634 --> 00:20:17,335 somebody around the world that's experiencing strife. Mhmm. 552 00:20:17,900 --> 00:20:19,259 To go back to something you asked me 553 00:20:19,259 --> 00:20:20,799 earlier, what are some other stories? 554 00:20:21,419 --> 00:20:23,900 Well, at at, the MBDC, I got to 555 00:20:23,900 --> 00:20:24,960 stand with a woman 556 00:20:25,259 --> 00:20:28,059 who was very much into her strife knowing 557 00:20:28,059 --> 00:20:30,460 that she's hearing about all of these wonderful 558 00:20:30,460 --> 00:20:30,960 medications, 559 00:20:31,755 --> 00:20:33,835 but yet, you know, feeling the burden that 560 00:20:33,835 --> 00:20:35,195 she's not gonna be able to bring this 561 00:20:35,195 --> 00:20:37,994 home to her son. And just by having 562 00:20:37,994 --> 00:20:40,474 a ten minute conversation with her where she 563 00:20:40,474 --> 00:20:41,375 felt seen 564 00:20:41,755 --> 00:20:42,894 seen and heard, 565 00:20:43,195 --> 00:20:44,880 I could see that the hope in her 566 00:20:44,880 --> 00:20:45,380 eyes 567 00:20:46,000 --> 00:20:46,320 that, 568 00:20:47,279 --> 00:20:49,680 you know, somebody does care about me and 569 00:20:49,680 --> 00:20:50,900 somebody's gonna do 570 00:20:51,359 --> 00:20:52,660 something to make a difference. 571 00:20:53,039 --> 00:20:54,960 Yeah. Well, beautifully said. And thank you so 572 00:20:54,960 --> 00:20:57,119 much to you, Debbie and Cindy, for sharing 573 00:20:57,119 --> 00:20:59,039 your time and your stories today. You know, 574 00:20:59,039 --> 00:21:00,605 at the at the Coalition for Humophobia, we 575 00:21:00,605 --> 00:21:02,444 know that community doesn't stop at the state 576 00:21:02,444 --> 00:21:04,605 or, you know, country borders. This is a 577 00:21:04,605 --> 00:21:06,605 global thing. And the work you guys are 578 00:21:06,605 --> 00:21:08,924 just doing the work you are doing is 579 00:21:08,924 --> 00:21:11,164 just wonderful. So just a powerful reminder that 580 00:21:11,164 --> 00:21:12,970 no act of compassion is ever too small 581 00:21:13,190 --> 00:21:15,269 and that together, we're all changing lives. Again, 582 00:21:15,269 --> 00:21:17,029 go to save1life.net 583 00:21:17,029 --> 00:21:18,330 to connect to this organization. 584 00:21:19,110 --> 00:21:21,130 And thank you again for your time, Cindy. 585 00:21:21,910 --> 00:21:23,750 Thank you for having me. And thank you 586 00:21:23,750 --> 00:21:25,049 so much for being here, Debbie. 587 00:21:25,350 --> 00:21:27,194 It's been a pleasure. Thank you. Alright. This 588 00:21:27,274 --> 00:21:29,534 has been Boundless Bee, the hemophilia b podcast, 589 00:21:29,674 --> 00:21:31,434 the podcast standing with you from a family 590 00:21:31,434 --> 00:21:33,855 like yours presented by the Coalition for Hemophilia 591 00:21:34,154 --> 00:21:36,494 b in a partnership with Balancing Life's Issues. 592 00:21:36,714 --> 00:21:38,575 Until next time, everybody. Take care. 593 00:21:48,490 --> 00:21:50,490 Thank you for listening to Boundless Bee, the 594 00:21:50,490 --> 00:21:53,450 Hemophilia Bee Podcast, the podcast standing with you 595 00:21:53,450 --> 00:21:55,744 from a family like yours, presented by the 596 00:21:55,744 --> 00:21:58,384 Coalition for Hemophilia B and in partnership with 597 00:21:58,384 --> 00:22:01,424 Balancing Life's Issues. Produced by me, Kai. Got 598 00:22:01,424 --> 00:22:03,184 an idea for the show? Send us an 599 00:22:03,184 --> 00:22:05,576 email at podcast@hemob.org, 600 00:22:05,737 --> 00:22:07,416 and don't forget to stay connected to your 601 00:22:07,416 --> 00:22:10,057 community at hemo b dot org. Anything else 602 00:22:10,057 --> 00:22:10,877 to add, Miles?