More Than Surviving: Patrick James Lynch on Hemophilia, Healing, and Hope

Growing up with severe hemophilia A, Patrick James Lynch was told a different story about what his future might look like. Now, reaching middle age, he reflects on what it means to live in a season of life many in his generation weren’t sure they would see.

In this episode of the Hope Podcast, Jonathan James sits down with award-winning filmmaker, patient advocate, and Believe Limited co-founder Patrick James Lynch for an honest conversation about aging with hemophilia, chronic pain, joint damage, surgeries, and learning to navigate a changing body after decades of living with a bleeding disorder.  

Patrick also opens up about losing his younger brother to an untreated head bleed, how grief shaped his mission, and why he believes storytelling can reach people in ways traditional education sometimes cannot.

This episode explores:
• Aging with a bleeding disorder
• Mental health and vulnerability
• The importance of peer support
• The future of treatment and access
• Finding meaning through advocacy

This conversation is a reminder that surviving is only part of the story; finding purpose, connection, and hope is what comes next. 

Connect with Patrick James Lynch & Believe Limited:

Believe Limited – Creating entertainment, education, and experiences for the bleeding disorders community:
https://www.believeltd.com/

BloodStream Media – Podcasts and conversations for the bleeding disorders community:
https://www.bloodstreammedia.com

Follow BloodStream Media on Facebook:
https://www.facebook.com/BloodStreamMedia

Believe Limited Films – Stories created to educate, connect, and inspire:
https://www.believeltd.com/film

Subscribe, share this episode with someone who needs to hear it, and join us for more conversations from the bleeding disorders community.

Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org. 

Transcript

Welcome And Why Aging Matters

SPEAKER_04 0:00

Welcome to the Hope Podcast. My name is Jonathan James, and I'll be your host today. And I am really excited to dive into an important conversation with a dear friend of mine, Patrick James Lynch, who's going to talk to us a little bit about aging with a bleeding disorder. I also want to invite you to like and share and subscribe and do all the things that you do on these types of episodes so that you can invite your friends and family to listen along to this important discussion. Patrick has been an impactful leader in our community as an award-winning filmmaker, patient advocate, and co-founder of Believe Limited, who lives with severe hemophilia A and has spent his career turning lived experience into education and storytelling for the bleeding disorders community. He dedicates his work to the memory of his late brother and continues to speak openly about grief, resilience, and the power of informed, engaged patients. Most recently, Patrick has navigated major surgery himself, adding a fresh and very personal perspective on what it means to age with hemophilia, face complex procedures, and still show up for the community every day. So with that, I hope you enjoy this episode and make certain that you like and subscribe. I also want to say a special thank you to our episode sponsor, Janentec, for sponsoring educational opportunities just like this one. Well, Patrick, it's great to have you on the Hope Podcast. Thank you so much for joining me today.

SPEAKER_02 1:23

Oh my goodness, man. Thanks for having me. It's a pleasure to be here. This studio rocks.

SPEAKER_04 1:27

I'm just trying to, you know, keep it excellent, man. It's it's uh it's a the world is moving so much faster than I can keep up with these days. So I have to like, you know, keep good people around me like you to help keep me on my toes and make sure I'm doing it right. I hear you.

SPEAKER_03 1:42

Yeah, absolutely hear that.

SPEAKER_04 1:43

Well, I'm so excited. I've been looking forward to diving into this conversation for a long time. And and we were talking recently about just all of the things that we've seen change in the community and seen change in our lifetime. And you and I are about the same age, and I know it's kind of a weird thing to talk about aging with hemophilia. I know for me it feels weird because in my head and my heart, I still feel like I'm like 26, somewhere in there, you know. But um, but I, you know, at at 47, I'm going, oh my gosh, like, you know, there's a part of me that says, I don't think I ever thought I live this long.

SPEAKER_00 2:17

Yeah.

SPEAKER_04 2:17

I mean, we were told that. That's right. And so um, you know, here we are at this part of the journey and going, oh my gosh, we've got kids and we've got this and and technology and treatments changed dramatically. And so a big part of the conversation that I want to have with you today is to talk about aging with a bleeding disorder and just kind of what the future looks like. But before we do that, I want to talk about your backstory because maybe some of our listeners don't know you as well as I do. And so I'd love to know a little bit about you know how you got here and and how you're how you're where you are today.

Patrick's Story And Brother's Loss

SPEAKER_04 2:49

Sure, yeah.

SPEAKER_02 2:50

Well, I was just reflecting on the last time you and I were in Louisiana in person together. It was 13 years ago as I was driving out to Los Angeles to move there with my co-founder Ryan Gielan, and had no idea that I'd be on your podcast 13 years later talking about Believe Limited and all those things. So trippy. Um it's crazy. But yeah, we've been in operation as Believe Limited for 13 years, and I I know you, you know, you know the story, and and many in the community do, not everybody, but I had a younger brother who also had hemophilia. And when he was in college, he passed away from an undiagnosed, untreated head bleed. And I subsequently learned, cleaning out his dorm room, that his factor was in a duffel bag under his bed, shoved against the wall, blocked by books and shoes. So it was clear he'd fallen off prophy. We never did find out exactly what happened to him, what kind of fall he took, but my big takeaway was he had fallen off his regimen and had nothing in his system to protect him at the time of the incident. So that was an inspiration for me because obviously it's a it's a traumatic event, but I was also disturbed by it in a certain way because I've never fallen off Profi and I couldn't get over that part. We have the same parents, same doctor, same diagnosis, same, same, same. What happened to you, man? Right. And what I deduced was that he ultimately never identified with having hemophilia because he wasn't pushing physical limits, trying to play sports and be competitive. I was. I was dealing with the physical realities. He didn't have an inhibitor rendering the medicine ineffective, putting him into pre-treatment era life. I did. Wow. So I knew the consequences of hemophilia. Adam did not. And we had a great we my mom's a recently retired registered nurse, so she had comfort with all the medical stuff. She was infusing us. She was a night nurse. She would infuse us when she'd come home from work. She would just pull our arms out of the bunk beds and infuse us while we were still half asleep. Wow. And she would do that until we were in high school.

SPEAKER_04 4:48

Wow.

SPEAKER_02 4:49

So he just never developed the identity of I have this thing, I need to do some stuff to take care of myself, and so long as I do, I can live a very full life. He went off to college, and just like a kid might stop brushing his teeth for a while, right? Because they're independent and kind of losing track of some things, he lost track of his prof. So on the heels of that, I started looking around at well, what are we doing? He was 18 when he died. And my thesis was his disconnection at 18 is really the result of not being connected in his adolescence and his teenage years, way earlier than 18. So what are we doing for those tween teen adolescent populations to make sure they're engaged? It's nice that we produce things and say education, that's good, education's good. But if the person's not paying attention, then it's for naught, right? What's that old adage when the student is ready, the teacher appears? Well, we got to get the students ready. Right. And my theory was the best way to do that is play in the sandbox that they are already in. Entertain them. Young people are online. And going back to when the company started in 2012, I'm talking about content. I tell you the number one question I used to get what is content? No one asks that anymore. Right. But the question then was what is content? And it's like content, we gotta put things online. We have to create these magnets that young people will gravitate toward that help them lean into the condition. It doesn't have to be overwrought with education. It doesn't need to be the be-all end-all of the, but it needs to be something that helps them lean in, buy in, pay a little closer attention. From there, we can do a bunch of educating and empowering. But if we never, if we never initially engage them, and my theory was entertainment's the best way to engage. If we never engage them, then all that education and empowerment is for naught. So that was the start

Building Believe Limited Through Story

SPEAKER_02 6:32

of it. I didn't know at the time that I thought we were doing one project, stop the bleeding. Thirteen years later, we're doing dozens and dozens and dozens of projects, no longer stop the bleeding, actually, for the first year. Um, but I had no idea it would grow the way it did, but it did become clear to me quickly. This was more than a one project concept. This was in a this was a philosophy for how to approach health education. And I didn't see anyone else doing it quite that way. So I just ran after it.

SPEAKER_04 6:58

Wow. Yeah, and what a what a journey that's been. I mean, you've had so much. I want to start with the name a little bit because you you you came out of this name that kind of like I don't know, at first glance, you're like, believe limited. Like I'm gonna believe in something, but just a little bit.

SPEAKER_02 7:14

Like, what is what is the name even about? Yeah, the name's fun. Believe limited. Um for us, obviously, believe, aspirational, uplifting, hopeful, forward-looking, a reason to come together. But limited because everything's always on a budget, on a timeline, within parameters. So we kind of liked the juxtaposition of like believe, but we are uh a professional agency and production company, so we have to take into account our boundaries. Yeah. So that was kind of the fun push-pull of believe limited. But yeah, sometimes we get called believe unlimited. I don't necessarily mind that. Right. Right. I like the idea, but that's the origin.

SPEAKER_04 7:53

Yeah, that's cool. There is kind of an interesting thing there, where it's like I think you said to me one time that you know, that you didn't feel like that one could actually be true without the other, that there's like sort of these within the confines, actually beautiful things arise. And so I I think that there's something really like very intuitive there that's like, man, so there is something about healthy boundaries. I think that's true about us even living with the hemophilia. I've heard recently some people in the community talk about, you know, how do what does life live like without hemophilia? And I actually think like some of the greatest things that I've gained in life has been the community that comes along with the bleeding disorder. Oh, for sure. It's been the fact that I actually had to learn to operate within confines at times that actually helped me to accelerate to force me into thinking differently about life, maybe than my peers did or friends at school or something like that. And so there is actually sort of this framework of like actually healthy boundaries can create acceleration, not just uh not just a stagnation, which I think sometimes we think, oh, more options is better. But sometimes it's not always true, right?

SPEAKER_02 8:52

That's not always true. Yeah, and we'll say sometimes in storytelling and in creativity, through structure comes freedom. You know, there are those who say, like, oh, I don't want to take a class on how to write a screenplay. They're just gonna give me all this templomatic. I just want my raw, passionate, this is how it happened. I'm gonna put it down the page. I guarantee you you'd be better off if you took that class. There's a reason. Yeah. First act, second act, third act, beginning, middle, end. Like this goes back to Aristotle's poetics. Like, we're not reinventing the wheel here. Good classical storytelling has been around as long as human beings have been talking to each other. So we don't have to look too far for the lessons and how do we communicate effectively. Yeah. And again, you know, I've just tried to package that in an as entertaining a way as possible so that people are paying attention. Right.

SPEAKER_04 9:35

And and you have an education background in this as well, right? You went to school for theater and and and that kind of thing as well. And that's really led into so much more of doing a variety of different types of productions. I know you did uh uh humophilia the musical, you've done uh I might be saying that wrong. No, you got it. Okay, cool. Uh, but there was you know, all these other things that you've done throughout, not just not just stop the bleeding, which was kind of a uh, you know, first of all, I have to give you major props because you were the first humophilia anything really on YouTube, right? And now that's it's there's a lot of content out there. Content? We're not saying what is content. We're not saying it, no, but you were really on the tip of the spear of saying, nope, this is the place we need to be actually in the common marketplace where everybody's looking for information. I think prior to you doing that, really the best that we had was like, let's go to Google and look up the word hemophilia. But it was like it really wasn't much there. And so one of the things that I have appreciated about your journey and some of the decisions you've made along the way is saying, no, I want to be out front in public, you know, making hemophilia sort of normalized in a way to say, hey, listen, this is you can find this anywhere you're looking for it. And and uh and and YouTube provided a great platform for this, and like you know, podcasts like this and yours that you're doing now with uh you know uh all of the different ways that you communicate is now there's a lot of uh content available on YouTube. But um, I'm just excited about how you know when you started that, I remember uh Stop the Bleeding was sort of this office uh third person view sort of you know uh sitcom style thing. And oh my gosh, so out of the box. But there was this framework around camp that just was like it felt like you could watch an episode and feel like you were at camp, you know, and now nobody would be doing as ridiculous of things as you were doing on the show, but at the same time, you brought this lightness and this humor to the equation that was kind of made it be okay to laugh about living with a bleeding disorder.

SPEAKER_03 11:35

That's right.

SPEAKER_04 11:35

And uh I I I just really enjoyed that, but also saw the value of it of really reaching the audience that you were trying to reach at the time. And I know you have to look back on all that with a lot of fondness, even though the chapters change, right?

SPEAKER_02 11:47

Oh, yeah. I mean, what a dream come true. Yeah, you know, it's one thing to be. I remember when I was sitting in the bedroom summer before started pitching, stop the bleeding. So I guess this would have been 2011, and I was watching The Office, and I was thinking about my brother, and I was thinking about what happened to him and his disconnection, and you know, my mind's just kind of going where it's going. And I had this aha moment that, you know, the office gives this structure where the characters talk directly to the camera. So you can talk directly to the audience, you invite the audience into the world. There is no fourth wall. Well, that's interesting for a show that's designed for a community to say there is no fourth wall, you're in this with me. Also, it's cheaper than if we were to do something in a more conventional scripted format. So there's a producibility angle, there's a community-facing angle, and man, that would be a lot of fun. Maybe just maybe there's an idea here, and then to actually take that to you know, stakeholders that ultimately Baxter, now Takeda, and meeting someone in marketing who got it, who heard the idea and got it, and then ultimately couldn't support it commercially because of its nature. So it was funneled through their grants department. And but it was because people on the inside understood and cared. And when we got feedback from legal, when we got feedback from regulatory, they didn't squash the project. They instead helped me find another channel for it to exist because they appreciated there is nothing like this, and this just might work. And I am forever grateful to those folks who helped, you know. I mean, one of them, Janie Davis, we still work with actually now at a different walk of life because that's how it goes. So you mentioned earlier the great people. I forget if we were on mic or off mic, but just the great people we have around us. And when I think back to the origin of Stop the Bleeding, you know, it's easy to support something once it's successful. Look at hope, right? Right, look at what hope's become. Right. It's easy to be a champion of hope now. Let's go back to 2013 when we were hugging outside the my red car.

SPEAKER_04 13:43

We were holding on to each other because that's pretty much all we had to hold on to.

SPEAKER_02 13:47

100%. Yeah, right. Now it's easy. It wasn't easy then, just like it wasn't easy for you. So I'm sure just like me, you know, you remember the people that were there in the early days that helped in the hardest moments because those are the people I remember whenever I need a bunker, like I want them in it.

SPEAKER_04 14:01

Yeah, that's so good. So true. And I and I know that, you know, just having that altruistic perspective of trying to help, you know, really solve a problem based upon watching what your brother went through. Um, you know, I I know that there's a a place in in the journey that you also pull from so many of your own life experiences. You had an incredible, I know your backstory was uh had a lot to do with it. Your own camp experience was really, really fond memory. You went probably one of the best camps in the whole country. And uh not to mention they're all great, but you know, but there's there's some that were just exceptional, and you had a great camp experience. So you brought that flavor almost to this online environment that people could kind of throw themselves into, right?

SPEAKER_02 14:42

Well, that I felt like camp had some secret sauce that we weren't doing a good enough job of figuring out how to sprinkle onto the other 359 days a year. You know, it was like, wow, we go to camp, we meet with each other, there's information exchange, there's normalization of these extraordinary circumstances we live with, there's fun, there's adventure, there's camaraderie, there's all these amazing elements. And then it's like back to the real world, back to school. Now, now the only time I think about or talk chemophilia is at the hospital, and the only time I see somebody is when I go to clinic. And so I was kind of frustrated by that and thinking in the early era of social media, noticing like there's a lot of us, we may be rare, but there's a lot of us collecting on these online platforms. Yeah. Could we bring some of that camp energy to the online world? Could we bring some of that challenge by choice, camaraderie, support into this new space? And I just felt like we could and figured it was worth a shot. And to your point earlier, no one else was doing it too. So it's kind of like, well, if not me, then who?

SPEAKER_01 15:45

Right.

SPEAKER_02 15:46

And uh now it's great. Now there's a ton of community online, and you know, I no longer feel the pressure, frankly, that I used to feel to be meaningful online all the time because there's a lot of people who are who are actively contributing for those of us who are tapped in. Um, but it wasn't like that, you know, 12, 13 years ago. Yeah, that's so true.

SPEAKER_04 16:05

That's so true. And and so much of your work has also matured way beyond, you know, um, a funny sitcom camp style thing. I mean, you've done some amazing projects.

From Sitcom To Documentaries

SPEAKER_04 16:16

I mean, we were just talking earlier about you know Bombardier Blood, for instance, which was a documentary that was following someone in the community, and and uh uh you know, just just but you we we just uh watched actually, I think we had a showing at at Hope Conference with um uh dismissed. What a powerful, powerful documentary uh that shares the story, just incredible work. And tell me about like how did you make that shift from like, okay, we're gonna you know reach maybe this younger demographic, and but maybe maybe there's content for everyone involved and and really hitting the heartbeat of some of these really critical issues along the way.

SPEAKER_02 16:56

Yeah, so we had a a speaker series we were doing for a specialty pharmacy uh at around the same time. That that was the second project after Stop the Bleeding, and that gave me the opportunity to go to different chapter and patient organization events around the country, conduct some panel conversations, get to know community all over the place, listen, learn, get the flavor from different parts of the country. Um, so that was very educational and informative. Then Bombardier Blood kind of well, actually, let me take a step back before Bombardier Blood, even in 2014, 2016, um, I read from the World Federation of Hemophilia's World Congress that I guess it was bioverative at the time, now Sanafi, was making this one billion with a B units of factor commitment to the humanitarian aid program of the World Federation. This was before they even had their products on the market.

SPEAKER_01 17:52

Right.

SPEAKER_02 17:53

They built into their operational design a certain amount of manufacturing that was going straight to humanitarian aid. Wow. Thank you, Glenn Pierce. Right. Uh and John Cox. Um, but I read about this in a really boring black and white press release from Australia that my Google Alerts happened to pull up. And I thought a billion units of factor is being donated around the world. That's a huge amount of factor. This is a big story.

SPEAKER_01 18:19

Right.

SPEAKER_02 18:20

So I kid you not, I wouldn't do this today. But at the time, I found every public-facing email address for people at the World Federation and emailed every single one of them. And I said, I'm Patrick, I have severe hemophilia A. I'm a content producer. Here are some of my credits. This is a huge story. You need to be capturing this. I want to see the boxes, I want to see the product going into trucks. I want to see the trucks going to airports. I want to see the airports bringing product to hospitals. I want to see people going to the hospitals. I want to see lives being changed. This is, I can't think of a more profound story this community could ask for. And I'm reading about it in the most boring press release I've ever seen. We've got to do better. And fortunately, uh, enough people heard what I had to say and they brought us in and they said, Would you come with us to

Global Access Lessons From Senegal

SPEAKER_02 19:05

Senegal? We're doing this big delegation. We'd like to film, and we did a 10-part video series for the WFH in 2015. Uh, so it must have been 14 when I read that thing, in 2015 in Senegal. That opened my eyes to hemophilia on a global scale and what it looks like in middle and lower income countries in particular, and started to learn a little bit about how change takes place in those environments. So now fast forward a little bit. Six, eight months after that trip, Chris Bombadier introduces himself to me. And I was like, Yeah, I know a little about you. And he's like, I know a little about you. It's like, yeah, mountaineer with hemophilia, film guy with hemophilia, it's a small town after all. But he told me he had this vision. He said, I'm climbing the seven summits, I've done five. Next is Everest. Nobody really here knows of these other mountains. I'm not getting a ton of attention for it. But Everest, like, people know Everest. And to be the first person with hemophilia to climb Everest, which is in a country that is amongst the poorest in the world, where hemophilia care is as substandard as you could ask for. The juxtaposition of being able to climb this mountain because I have access and I have product when they can't in 2017 at the time. What a story. And I was like, I sign me up. So at that point, he and I spoke with Lori Kelly, founder of Save One Life and community stalwart for decades. Uh, she got it as well, and she said, talk to this person, this person, and this person. We did, and we were fortunate enough to find funding from Octapharma. So it was really that trip to Senegal with the WFH that opened my eyes on a community level, and on a production level, it was our first international production trip. So we hadn't done at this point, we do like I don't know, maybe 10, 12 international productions a year. 12 might be high, maybe it's eight to 10. Yeah. This year it might be 12. Um, but at the time it was just that one. Wow. But that was enough to say, okay, we can go with Chris to Nepal, we can meet the community there, we can tell this story. And we did. We we even got Rob Bradford up on Mount Everest for two months as our one-man producer, mountain director, sound operator, everything guy. He actually tells a great story. You know, when you're doing a documentary, you have so much footage. And you're constantly backing it up on hard drives and duplicating hard drives and just making sure that you don't lose anything. He's on Mount Everest by himself. We're getting pictures from him that he's sending to us with stolen Wi-Fi from the medical tent, and the drives are frozen, the laptop is frozen, the cameras are frozen. And it's like, this is not going to work. So he learned about how to detaw things. He's sleeping in the sleeping bag with the camera and the hard drive so that they don't freeze overnight anymore. And he tells us one story about giving a hard drive to this 14 year old Sherpa the day that a helicopter was coming. That the Sherpa then hands it to somebody else who gets on the helicopter with it. The helicopter takes off, and there it goes. He's like, I didn't even say anything to this boy. Like, I was like, here's the drive, and the kid was off. And he's just like, I was just watching the drive in the helicopter, going, hope. That makes it home. There goes the movie. Oh my gosh. But it worked. I mean, you know, sometimes you just got to raise it up and hope the universe is on your side. And with that project, it certainly was.

SPEAKER_04 22:13

Wow. And what a great project, too, like you said, to tell a story of how far treatment has come, but also what can be accomplished when access is possible, which is really a global story. That's not, that's not just a, you know, unfortunately today still, and you probably know better than I do the latest statistics, but my understanding is that, you know, more than 70% of the world of people living with bleeding disorders do not have sufficient access to treatment, right?

SPEAKER_02 22:41

That's right. Yeah, that's correct. It's about three-quarters of the world doesn't have predictable, reliable treatment access.

Nigeria And Building Care Infrastructure

SPEAKER_02 22:48

We were in Nigeria in in February for a project that we're doing with Megan Adideron, who's the executive director of the Hemophilia Foundation of Nigeria. And Nigeria is one of many countries that is unfortunately 100% reliant upon donation. So they brought us to their cold storage facility, showed off the product, talked through their process, talked through how they orchestrate with the HTCs and all, and it's an amazing amount of organization and operation taking place. But then there's this what's the word? This this uh chilling reminder that it is all so fragile because it is on the backs of donations exclusively. What's neat about progress in Nigeria? Megan, without getting into too much of a long story about Megan, because we are doing a documentary about Megan. That's why we were in Nigeria. It's it's worthy of it. But she started this foundation with just her son. No patient registry, no foundation, no hematologist in Nigeria knew about hemophilia. If anything, they were like, it must be sickle cell. She started this one foundation with her son. She, like me, emailed everyone she could find when she started to learn hemophilia, got a response from Asada Far, the director of the World Federation's Humanitarian Aid Program. And from there, he started helping her infrastructure build. Start with a registry. Even if it's just your son, that registry will help you advocate to the government. Once you have a certain number of people, they can't ignore you anymore. She's done that. That registry has over 950 people on it now. Should have thousands, right? You know, be given the population in Nigeria, but it had zero 20 years ago. Now it's got nearly a thousand. Now hemophilia is on the list of prioritized non-communicable diseases in Nigeria. That's the step before being able to lobby for them to actually procure some amount of medication so that, like I said, Nigeria isn't fully dependent upon donation. Right. So to see her taking the steps and to see that process taking place, it gives me a lot of hope. And people, the cool thing that I've learned going around the world the last 12, 13 years and meeting community, there are people like Megan all over, these power of one individuals. And it's not to say it takes a village, everything takes a village, but you do need these individuals that stand out and say, I will lead, I will try something, I will give it a shot, I will walk into that office, I will make that effort. Megan's one of those people, you're one of those people, and there's those people in our community all around the world, and that's how progress happens. That's so true.

SPEAKER_04 25:13

With that goes a lot of sacrifice. I I think that that's the other thing, too, is that people don't really understand, like behind the scenes, what you've been through, what I've been through, what others have been through, and people like that. That literally, I I just it's just I I mean, I think about people when I see stories like that, and and I've met some of those people along the along the journey, um, you know, especially globally, where you literally have nothing but a spreadsheet.

SPEAKER_03 25:38

Yeah.

SPEAKER_04 25:38

That's it.

SPEAKER_03 25:39

Yeah.

SPEAKER_04 25:40

And no real long-term support, no long-term commitment. You know, we're so blessed in this country that we do have access. And and because we have access, there is sort of those people who can get behind financially to give, you know, even online. Like we we built most of our financial assistance programs off of individuals who gave, not off of corporate donations. That didn't come until much later. And so, you know, it's crazy to think about how people would sacrifice, you know, today we still, you know, carry this forward because we do so much of the work we do is financial aid for people here in the United States. Right. And because there's so many people living in third world light conditions in our own backyard that we don't know are are doing that. Uh, just I was just looking at some reports the other day, it's like just to kind of keep a pulse on things, and we got 768 calls in the last two weeks alone of people who were in desperate situations that had nowhere to turn.

unknown 26:29

Wow.

SPEAKER_04 26:30

And are having access challenges. Most of those people are having difficulty getting to access to medications, and some of those barriers are just purely financial. They can't put gas gas in their car to get to the treatment center. Right. Some of them are being evicted. I tell people this all the time. It's like, you know, you you think hemophilia is hard. Try having hemophilia and being homeless. Totally. We talk to people every single week in this country that are homeless living with hemophilia. You don't even have an address to send your shipment to your factory to. And that is in a system that arguably is one of the the highest percentage of access in the whole world.

SPEAKER_03 27:08

Right.

SPEAKER_04 27:09

And so I your concept of fragility in terms of how we get to the resource, um, i i is is you know, um so true. And I think about people like the lady you mentioned in Nigeria who who literally have zero, have nothing, nothing, nothing, but have enough hope to get up the next day and say, I'm I'm gonna put one more, I'm gonna see if I can find one more name to put on this list. Yep. And I and every day do that for for years at a time. And it's just it it makes me so uh proud in a way to be a part of a community like this. Because I feel like that person, maybe I've never met them, but it's like that person's like a cousin or like a, you know, and it feels like we're related because we're just such a small community, but it's like, oh my gosh, like I I I I would rather meet that person than I would the president of the United States or you know, president of any country. Totally. It's like I I don't I I just to me it's like so honoring just to even be associated in the same community as people like that. And um, that drives me. I mean, I know that drives you too. It's oh yeah, stories is what it drives me to say, you know what, you know what? If we had absolutely nothing like we can still do good in the world, 100%.

SPEAKER_02 28:28

And you know, I'll cheat a little bit and l mention that on our outline for our conversation. You know, you had a note somewhere um that I was just reminded of. When I was first in Senegal and Nepal, and as I mentioned, having my eyes opened to what hemophilia looks like without access to care, uh, it was difficult. It's hard to see, it's hard to process. And there's an element of it's not exactly survivor's guilt, but it feels related to that.

SPEAKER_04 28:57

Absolutely.

SPEAKER_02 28:57

Like, why me? Why am I born in this country? Why do I have care? How come my knees don't look like that?

SPEAKER_01 29:05

Right.

SPEAKER_02 29:06

But I have to say that pretty quickly shifted for me.

Privilege Without Guilt

SPEAKER_02 29:10

And I don't remember, there must have been a moment on one of the trips, but I can't put my finger on it, where I started to believe it's actually my obligation to live my best life. That's my obligation. If I want to honor those without, my role isn't to sit in sadness that I have. That doesn't do anyone any good. But what I can do is appreciate my privilege. I can appreciate the opportunity that I have to make a difference and to live my best life. And I can do my best to do just that. And if I'm doing that, that's my responsibility to the community, not to grovel or feel bad about my fortune in life. That's not that doesn't do anyone any good. That's right.

SPEAKER_04 29:49

I I I think this is a this is a shift for me too, in some regards, is that like, you know, you you kind of wonder, um, you know, if if you like you said, survivor's guilt, there's a sense of guilt that comes, it's like, man, I I can't believe I have this. Like, can I, you know, somehow give some of this away? You know, and and there's a there's a piece of it that uh from a business point of view, because you and I both are business people, and it's like there's a sense of like actually part of what helps. I I I saw a statistic a couple years ago showing that the United States basically makes up only uh I I forget what the percentage was. It was like 10% or I don't know what it was, 20%. I'm gonna get it wrong, but a small percentage of the total global population. However, we also are make up over 50% of all drugs sold globally in the United States. I believe it. So, so you know, it's an interesting thing, but but but from a business point of view, most drug companies have to be able to be successful in the United States before they can take it anywhere. And that's true about almost any drug. And so what's what's curious to me is that I've I've kind of had to even take a step back and look at it from a business point of view at times and say, you know what, if it's successful here, if a drug can make it here, then there's an opportunity for maybe people in other countries to eventually have this trickle-down effect where it can be made available. And we've actually seen that happen. I mean, you talked about Assad and the and the World Federation and some of the work that they've done. You've seen it go from purely donation models to where there was actually a uh a uh you know prescription of purchasing that begin to take place because there was this realization that they can't ignore it anymore. And so I I think India is a good example of some of that. Whereas like when we started this, there was almost nothing happening, you know, in India for a period of time, or at least most of it, but and now that's continues, it's it's slow, but there is growth happening there in terms of what they're purchasing. I think other countries are similar. So, so I don't know. For me, I maybe that's just the the narrative I tell myself to make myself feel better about maybe the privilege that we have, but it's like there is a sense of like, no, I almost have a duty to take my prophylaxis in the manner that my doctor prescribes. I believe that. Because by all of us being consistent, not only am I helping my own life and my my reducing my pain over time and everybody around you and the community, all of those things, but I'm also contributing in a sense to being able to keep the sustainability alive for those companies that are trying to make the manuf manufacture the medication so that it can be available to other countries down the road, right?

SPEAKER_02 32:29

Yeah, I I believe that. And I think the piece that exists in hemophilia that's important is infrastructure. Because you mentioned, you know, that I that concept of, well, if it's available in the US, then it starts to open pathways for it to be available elsewhere. I say yes, so long as there's some group of people concentrated on that, right? Because it won't happen by accident. There needs to be curated pathways to ensure access. That's right. And that's one of the things that I really respect about the work of the World Federation of Hemophilia. And though it's so different, the work of Save One Life as well, they're working on a much more one-to-one, actually it's not dissimilar from Hope in the way they go direct financial aid and assistance to those most in need. These structures and organizations enable us to believe that progress is possible. But without them, sadly, I would think that the 30% of the world, or excuse me, the 70, 75% of the world without predictable, sustainable access would continue to suffer. And frankly, it's something I worry about as we continue to see the expanded armamentarium of therapies. It's fantastic for those of us with access, especially those who have allergies or inhibitors or any kind of nuances that need to be negotiated with respect to treatment. But are we making sure that these treatments are reaching the majority of pa? I mean, when I think about it in those terms, the majority of us don't have predictable, sustainable access worldwide. The majority, most. That's wild. How can we have dozens of heme A and heme B treatments and still most human beings with hemophilia, even those diagnosed, forget about the undiagnosed? That's a whole nother thing we got to work on. The diagnosed don't have it. That's a problem.

SPEAKER_04 34:09

That's huge.

SPEAKER_02 34:10

So how does that change? And if we do get to the point of a one-and-done gene therapy for A and B, and if that starts to be where this community moves to in X number of years, what is that gonna mean for the people in Egypt or El Salvador or India or the Philippines?

Gene Therapy Worries And WFH Board

SPEAKER_02 34:26

I don't know, but I worry about it. And it's frankly, Jonathan, one of the reasons I'm running for the board of the World Federation of Hemophilia. Are you really? I am. In fact, what? Depending on when this comes out, I may or may not be on the board of the World Federation of Hemophilia, but uh it's for that reason. It's like, wow, I do want to have a seat at that table uh and be a voice for those who don't have a seat at that table and use my privilege and power to try to do better in a new way. That's incredible, Patrick. I I had no idea.

SPEAKER_04 34:53

Wow, you hear it, heard it ear first, kids. Breaking news. I haven't even shared that on my own podcast. Wow, that's incredible. Well, thank you so much for doing that. Because I I I think for all of us, it's like I think there's so many people that want to contribute. This gets me to do another whole total episode on this, but the amount of people that want to give back, I think are also don't know how to give back. Right. I I that that, you know, and and this may sound like, you know, an egregious overstatement, but it but m in my opinion, money is oftentimes the lowest competent denominator when it comes to how we how we give back. You know, it's it is our care and our concern and our presence and our availability and the the mom with the spreadsheet that is going to make a difference in the world. Money plays a role in that. I think of money very much like oxygen or gravity. You argue with one of those, it's an element that you you're gonna find quickly, you're probably gonna be on the wrong side of the argument. Right. But uh we need to respect it, you know. But at the same time, like you know, money is not the only way that we contribute. You know, money is not the only way we get back, and so many people have an opportunity to get involved and give back. And and uh man, I just I just applaud your your as busy as you are and so many things you have going on, so many projects that you have going on regularly. I just I just appreciate your your continued endeavor to try to give back in in ways like that, to give your time. Because like somebody said one time at one of our galos, they said the most important thing that anybody could give is their time because it is the most valuable. It is. And if you can't give your time, we'll take your money too. Yeah. You choose. But I but I think no, I just appreciate, you know, that just is a it's a good representation of your heart, of that who you are, you know, and and wanting to really serve the community.

SPEAKER_02 36:44

So yeah, we'll we'll see. You know, there's a lot of good candidates and there's only a few eligible spots. So I have no ego in it. Sure. Um, if someone else is in that role, fantastic. Yeah. Um, I like to believe that even just by putting my hat in the ring, going to Kuala Lumpur, speaking up for my two minutes, you know, I have to give a little two-minute speech as every candidate does. It contributes to the process. Yes. And it it helps me, it means I'm a part of the process, even if the result is not the result I would wave a wand and select. So we'll see what happens. More to come. Yeah, that's amazing.

SPEAKER_04 37:19

Wow.

Aging In Your 40s With Hemophilia

SPEAKER_04 37:20

I I want to kind of get into what we what we promised we'd talk about, which is aging. And and you know, here we are. Uh couple of gray hairs.

SPEAKER_02 37:30

Well, you don't have as much gray up there as I do.

SPEAKER_04 37:32

I'm trying, man. I got some. You got to come in on the chin, yeah. A little in there. It looks good. I told you earlier I was trying to get some hair club for men going, but my wife's like, no, it's wisdom. You got overruled. I know my wife says the same thing. I'm like, if you if you dig it, then I guess I dig it too. Thank God for good wives. I don't know. We're we're we're doing good. But I uh I I do think though that you know, we you know, we we've talked about sort of the state of the union in a sense, and maybe the state of the global union um in the community some, and and there's so much to dive in there. But you know, I do think back to to I can I have vivid memories of sitting in you know clinic visits and being told that I wasn't gonna make it, you know, and and being told, hey, this isn't you're not gonna live a full life expectancy and all that. And and uh boy, the the you know, iterations of you know, you know, those timelines, you know, you're like you'll never see 18, and then you see 18, you're kind of standing there going, I didn't plan for this, you know, what do we do next? You know. And now I think about where the state of the community community is now. We've got kids that have been on Profi their whole life and they're they're they're living their best life, they're into their first career and have had very few joint bleeds, you know. I mean that to me is like a crazy, wild, you know, like I it's just so hard. Fantasyland from where we were as kids. Right. And so I think of the future, and I have a lot of pun intended, of course, but lots of hope uh for for what the future could look like for for the community. But you know, how has that journey been for you in terms of just like having to almost rethink the future probably numerous times over in your lifetime? And and how do you see your own changes and your own aging? You know, how how has that opened up for you over time?

SPEAKER_02 39:13

You know what's interesting, even you asking that question. It's such a lived experience question. I don't think if you were a great interviewer who didn't have hemophilia, like I don't think you'd ask that question. Like you ask it because you know it too. Um I didn't have a sense of my future when I was a young person. When I was in my teens, I couldn't really see past college. Then my brother dies. That was four months after my grandmother died abruptly at 67, who was my maternal figure growing up. So my nuclear family went from four to two in four months when I was 21 and he was 18. And of course, his dying only reinforced this idea that hemophilia is gonna get you. In fact, I remember our hematologist, Dr. Donna D. McKelly. Um, she came in off the Long Island Railroad. I'll I remembered vividly her walking into his wake. I didn't expect to see her, and I just went up to her and collapsed into her arms, and I just kept repeating, it got him. It wasn't supposed to, but it got him. It wasn't supposed to. So that thought's always been there. And I even shared with my wife early in our relationship, like I had trouble seeing my life like into my 40s, into my 50s, and beyond. Um, I think it's only been in the last few years, and maybe with the arrival of my daughter in 2021, maybe that was a contributor. Certainly the surgeries, my ankle surgeries that I've had. I've had three ankle surgeries in the last three and a half years. Um, I've also put on a bit of weight, so I've slowed down between the ankles and my weight. Um, I've gotten more comfortable with the fact that, you know what, I I am aging. And I'm I'm in it now. I I kind of don't have to, I'm maybe realizing this as we're talking it through. I don't have to forecast it anymore. I am a guy in his 40s. I didn't see this when I was a kid. I couldn't, for all the creative visionary characteristics I'd like to think I have, I couldn't see my own future. But I'm in it now. I'm a 40-year-old with a wife and a kid and a business and a f and a network, and I'm doing life. I'm in it. There's no, what's it gonna be? It's this, it's what I'm doing day to day. So something has shifted in me in the last, I'd say three years. I think these ankle surgeries played a pretty significant role mentally in helping me accept some consequence of hemophilia. You know, I had not gotten, unlike many Blood Brothers, I don't have a whole slew of surgeries in my history. I had isotopic synevectomies on my left ankle and right elbow when I was 12. And actually, talk about aging. At the time, I overcame my inhibitor to get these cynovectomies done. Overcoming the inhibitor was huge, obviously. Go to Denver, it's still early in the radionuclear isotopic synevectomy days, 1998. And the oldest guy there was, I think, 31 or 33 years old, somewhere. It was one of those two numbers. And he was not in good shape. This guy could not move well, needed his parents' assistance, his you know, 50, 60 something year old parents' assistance to get around. And I was watching him, and it was the first time I had ever seen someone with hemophilia in their 30s. Because I'd gone to camp and I'd gone to clinic and I had seen other kids and maybe some counselors at the camp, but no one over like 21. So here I am for the first time seeing a 30-something with hemophilia, and this guy can barely get around. He seems like he's doing awful. And by the way, the next oldest person there was me at 12. So I remember thinking, like, is that where this goes? Like, is that is that the path? Obviously, different time, he lived through a different era than I have lived, but that was my model. That was the example. So I know this is a long-winded non-answer, but I guess, and shh, to summarize it, the realities I have been forced to face in the last few years, the surgeries in particular, the weight stuff that's come with my lifestyle changes, they've sort of just forced me to reckon with, hey man, you are a 40-year-old. You are a little slower than you used to be, a little grayer than you used to be. And that's okay. That's okay. I think it's just being okay with it. I didn't know I could just be okay with it. It was something to re-aging was something to resist. Now it's just something I'm living in.

SPEAKER_03 43:38

Just where you are.

SPEAKER_02 43:39

Just where I am. Yeah. Just a 40 something year old dude living life. That's all.

SPEAKER_04 43:43

Yeah, so many things come to mind about that because I I, you know, as you've m you know said, I I think about these things because I've lived this too. And so um, you know, it's interesting finding yourself at a place you never thought you would be, and it's not exactly the success story. That you'd hope for either. There's some bumps in the road that are pretty significant. And I was in a wheelchair for about three and a half years, which was kind of on the cusp of. So on time. Yeah, it was on the yeah, I had, you know, 10 major surgeries and and about five of those were back to back. I mean, just boom, boom, boom, boom, boom. And uh, I pushed off a lot for a long time, just trying to, you know, early adulthood, trying to, you know, I was a business owner in another life and it feels like a totally different lifetime ago. But I was I was trying to, you know, make make you know, headway into to building a home and a family and all of those things, and nearly lost all of it. And and it was in that process of of struggling just to keep my head afloat and to keep my family afloat at the time that I realized that, you know, uh I couldn't do it alone. And so, you know, when we started, hope was kind of birthed out of some of those struggles. We started giving to people as a passion project just because we had we knew what it was like to go through and have nothing. And and I just felt like that, you know, there was other people that had to be going through something similar to that. But um, and of course now, you know, as we sit here today, it's been quite amazing to actually see the the, you know, there's been thousands and thousands of people. I think we've in total we've been able to help over 3,500 people that we've given financial assistance to since our inception. And and of those people, we've given a little over seven million dollars away, which is just remarkable. My big dream, my big dream was to give away a million dollars. I actually had a check that I wrote out in one of my darkest moments. I I wrote this check out for a million dollars, and I thought I was gonna eventually, my hope was that I would become this like I was a financial advisor, and so I thought, you know, I'm gonna become like I'm gonna finally meet, you know, some billionaire and manage his finances, and then I'll make millions and then I'll give a million away, you know. Totally. And uh, and that never happened that way, you know. But it was like it was interesting how you know, I just found myself on this journey of going, man, I my big idea is I wanna I want to be able to give back. And I had no idea that seven million dollars later we would be here supporting people every day and and and really being a friend of people in their darkest hour and their darkest moment, like I was in in that moment. And I don't think I could be in a place to give that away had I not walked through it myself, you know. And I think about this in the context of aging, that was a really long way to basically set the stage for this. You know, my own feelings about aging have been very much connected to um sort of this it's been like a surprise that's been continually opening. You ever read a book and it's like you get to the thing you didn't see that coming, and you're like, whoa, it's like you know, I'm not a big reader, but I remember remember those books you could read when your kids were just like choose your own. Yeah, page 13 or page 47. Yeah, yeah. I love those. Those are like the only books I would read because my ADD would kick me off the path before I'd finish anything. But that was one of those books I just would love to read it. And I was like, let's read the next thing, you know. It's like, oh my gosh, I didn't see that coming, you know. That's the way life has kind of unfolded for me in a way. It's like I it's like these devastating circumstances that sort of like open up into a new chapter that you go, oh, I just I didn't see that, I didn't see the positive coming. Right. Right like and and now when I go through the hard stuff, like another surgery that I've last couple years been sort of threatened with. I've said to my doctors, you know, I'm like, you're threatening me with that. But um, but you know, it's these ideas of like, you know, when I go through hard stuff now, it's like it seems to stabilize a little bit because I've gone through the really deep valleys before and I've seen I've I've been also the beneficiary of coming out on the other end. Right. It was hard, right? So hard. But because of the community, because of the context, because of the people that surrounded us, because of the friendships, because of all of the other beauty. I, you know, I always say it this way, I've heard you say it some of the similar is that the best thing about being diagnosed with bleeding disorders is the community that comes along with it. There is something so beautiful of the of the context, and I'm feeling surprisingly so that way about aging a little bit too. There's a sense of like I looked at getting older as this thing to hate because when I was 12 years old, the doctor sat me down and said, Your joints look like you're an 85-year-old man. Right. And they did. I had my first surgery when I was 14. And, you know, I I it was it was brutal. And I needed my first surgery, actually. My my first target joint was my right ankle, and and they wanted to do surgery on me when I was nine, and they waited, but thank goodness they waited because that surgery ended up not being a good surgery option. But anyway, that postponed, and then my elbow became my second target joint, and it kind of accelerated the process really fast. I almost lost my arm. It was either amputator do surgery. Wow. And so, um, but uh, you know, it it ended up being one of those things where I just saw like these deep valleys full of pain, full of difficulty. And and so when I looked at being, they would say, Oh, but wait, the way treatment's going, you know, of course, you probably heard this too. By the time you're an adult, they'll have a pill, you know, or whatever. And it was like, I would look down the road and even as a teen and as a young adult and go, that sounds brutal. Like, I don't even know if I want that future. Right. And then I would meet older guys than me and see the destruction of their joints and go, Yeah, I really don't want that future. But the surprise to me has been that there has been these these gifts along the way that I also didn't anticipate things like gene therapy being an option, maybe. I mean, it's not here yet, but maybe maybe I didn't anticipate even just our therapies that we have available to us today being as good as they are.

SPEAKER_03 49:45

Night and day from when we were kids.

SPEAKER_04 49:47

Yeah, like I didn't anticipate all of that. And then the other joys in life come in, like having kids and you know, and and your daughter sitting in your lap and smiling at you and saying, Daddy, you know, it's like just those simple things in life and sitting on the beach with your wife or just uh, you know, enjoying a sunset or you know, whatever. I mean, it those joys I also didn't see. Right. Right. And so yeah, I have pain. And you have to take Tylenol, but the beauty that comes along with this is is also equally exponential.

SPEAKER_02 50:18

It is, and it's impossible to see.

Surgery Relief And Living With Pain

SPEAKER_02 50:20

I mean, talk about pain. One of the things that has shifted for me since my two ankle fusions, I am not in daily debilitating pain. I mean, right now I'll talk about it. Right. I was in a lot of pain for a long time. Yeah, yeah. And I didn't talk a lot about it. A lot of us don't. We normalize it, we get used to it. What's the point in talking about it? I don't want to be a burden.

SPEAKER_04 50:41

I want to more express it too just so you can get through your own daily life, right? It's a survival instinct. Yeah, yeah, right.

SPEAKER_02 50:47

But after I got the left ankle done, my bad one, and was like, wow, this is I'm not in pain. I couldn't believe it. In fact, I'll tell you, I was at the hospital, so I had had a more minor ankle surgery the year before. Same hospital, same surgeon, same everything. So I'm very comfortable there. And I remember telling one of the nurses, see the pain medicine schedule on the wall? I'm doing every one of those. I don't want anybody trying to wean me off early. Five days, I'm doing exactly that. I don't want any pain after this surgery, so don't even try. Surgery was a Friday morning. I went to bed Saturday night, slept through a pain dose, woke up, a couple hours had gone by, didn't get the dose I was scheduled to get, and then realized I'm not in pain. Less than 48 hours after the surgery. Wow, I was I mean, I'm sure I was in some amount of post-surgical pain, but compared to what I was used to, right, right, right. I was ready to get out of there and walk into my life. Right. Couldn't believe it. So by the time then it was very clear to me what was happening on the right side, and then I had to get the right side done. But that's all to say, yeah, when we're in that kind of pain and it's an everyday battle, yeah, you can't see the beauty of the sunset. That's so true. You can't appreciate your daughter saying dad-da. That's right. It is so distracting at a minimum. It is debilitating at a more appropriate word. Um so I give I give myself grace for not being able to appreciate the beautiful things that come with a full life as an adult moving into your 40s and beyond. Like I can what you say I can appreciate now, but I couldn't when I was in pain all the time. Yeah. I couldn't. Yeah.

SPEAKER_04 52:23

I I think that's a good point. I I think the thing that that you know has been interesting and surprising to me is that it it's been, you know, when I looked into the future so much as a younger person, it was it just felt felt so very bleak. But I just I also didn't know that there was gonna be beauty that was gonna come too. And and and that's really not to shame being in that place. It's it's it's not a condemnation of being in that place of suppressing and trying to survival mode. There's a survival mode thing that happens to everything. I think it's just human that we just respond to this and like suppress the pain, try to just you know, grit and bear it. But but um, but I do think that though that what I hope that people hear from our stories and from our journey is is that you know, that there's also beautiful things that come after, you know, some of those really hard places too. And and um, you know, it's a very common thing what you described. I experienced it too, is that you get one thing taken care of and you come out and you're just like, I I remember my last elbow surgery. Like I I've had surgery on my elbow five times, my right elbow. And uh I'm thankful to have it. It's you know, it's great now. So you may again you're using it well.

SPEAKER_02 53:33

I mean, to hear you say five surgeries, you wouldn't know to what to look at, yeah.

SPEAKER_04 53:36

Yeah, people always ask me, I've had it replaced three times. And so um, and it was really just because a total fluke like uh thing. I mean, both cases, uh of uh of where it it it actually broke the the rod itself broke at a golf clap. Uh and they found it was just a faulty part, like it was clap.

SPEAKER_02 53:56

Jonathan, didn't it golf? It's very gentle golf clap. What were you doing?

SPEAKER_04 53:59

It was a hard golf clap. I was kind of in I was into it. Okay. That's the problem. Yeah, I'm just I'm a hard clapper. Let's just be honest. No. It was but it really, it was, it was just a faulty part, and it was one of those things just devastating, and it sent me through a journey. But I remember waking up from that surgery of my last one where they replaced it and going, Yeah, like I had incision pain. I had, you know, surgical years, you know, but it was like, I'm ready to go. Like I could, I could go play tennis now, you know, is the way I felt.

SPEAKER_01 54:28

Yeah.

SPEAKER_04 54:28

And um, and so and and and I can relate to that. And so I've heard people say that about knees. I've been very fortunate not to have very much knee uh problems, but um, but yeah, and and so, you know, I don't I think we don't know how much pain we're in um as we go along the journey because you're just trying to to survive it. Um and at the same time, like after the healing is you know get occurred and that surgical pain is over, you go, oh my gosh, like, but then it highlights maybe the other side. Oh gosh, I didn't know how bad I was hurting on the other ankle or on the other, you know, shoulder or whatever it is that you're you know having trouble with. So, um, you know, but but to keep going takes a lot of encouragement, takes a lot of support from our family and our friends and our community. And um, and and I think it also leads to some some internalization of recognizing that we have to also have some sort of mechanisms in our life to help guide us through mental health challenges. I know that in those really painful surgeries, those really painful recoveries is where I was sometimes at my lowest. And uh I I can, I mean, I can say it now in in in retrospect very confidently that you know there was days where I wanted to take my own life as a result of going through so much. Yeah. But being on the other side of it now, it's like I have experienced some of the most beautiful things. I got to walk my oldest daughter down the aisle to get married. Trippy. Like crazy. Like I didn't think that was even gonna be possible. I thought I'd shoot the guy before he got a chance to initially is how I imagined that to look. Sure, yeah. I've imagined myself, I don't have a gun, but I've I imagine myself being on the front porch cleaning a gun, you know.

SPEAKER_02 56:14

Yeah, that's kind of how I imagine that future to be. That's how I, by the way, generally picture you.

SPEAKER_04 56:18

Yeah, okay, good. I'm glad I'm living up to your uh imagery there. But but but uh, you know, I don't even own a gun. So it's like a weird, you know. So but I surprised myself with that image. But then but then later on I meet him and I'm like, oh my gosh, it's like the son I never had. Like I couldn't believe that this was such a joyous occasion to meet him and to I just, you know, and then how perfect they were together, and then you know, them get and I just the moment of getting to walk her down the aisle, it was like I just felt like what a gift to be in that moment with her and and to watch and to watch her now grow into marriage and all this stuff, and now my my my other kids growing and maturing and all this stuff, and I go, if I had given up like where I wanted to give up because I was at such a low point, I would have missed all of that.

SPEAKER_03 57:11

And they would have missed out on it too.

SPEAKER_04 57:14

Right. So how do you our stories are very different, but in your journey, how have you felt like you've been able to overcome mental health challenges as it pertained to to getting older and slowing down and you know, all of the the hardships, and and how have you navigated that?

Depression Panic Attacks And Treatment

SPEAKER_04 57:36

I want to tell you about an important resource that I think that you would really like to receive called the Hope Factor magazine. We publish this magazine four times a year, and we would love to send it to you for free in the mail. It is a great opportunity to learn about people who have bleeding disorders that have overcoming experiences, people that have faced insurmountable challenges, just like you and I have, but they've also come through those challenges with victory. I think these stories will inspire you just like they have me. And there's incredible resources that we publish in these magazines every year to help you learn more about the programs and services that are available to you as a person living with a genetic bling disorder. Go to our website today to sign up and learn more about this important publication. I don't think you'll regret it.

SPEAKER_02 58:20

By force, kicking and screaming. There was um 2018, Scotland, World Federation of Hemophil meeting again, World Congress. Jeremy Griffin, the executive director from the New York City Hemophilia chapter, mentioned another young person with hemophilia who had died by suicide. And he had and Jeremy said something to me about when is someone in this community gonna step up and say something about this? It's an epidemic. And I don't think he was directly challenging me to do anything, but I kind of took it as a fair question. When is someone going to step up and try to do something? Something. Um and so I think it was on the plane ride home that I wrote this exhaustive piece titled, Okay, I'll admit it, I'm depressed. And it got thousands of unique reads within about a week. Um, and I got a lot of feedback from that. And I talked about finally admitting using that word. I couldn't even say it. I was sitting with my mom and my wife, girlfriend at the time, fiance, I don't even remember now, but we were sitting together in my mom's living room, and I'd been struggling, and I wanted to say that like I think I was depressed, and I couldn't believe it. I couldn't get the word out of my throat. I don't struggle to talk usually, Jonathan. Really? But I couldn't get the word out of my throat. And um that was the beginning. That was the beginning of a messy process of trying to understand what exactly is going on. Is it depression? Is it something else? Do I need therapy? Do I need medication? Do I need lifestyle changes? Do I need all of it? Am I eating the wrong stuff? What's what is going on? And I've had moments. I had a moment after that where I had to call Natalie to come home one day. I was experiencing what I would later appreciate to be a panic attack, but I thought I was dying. I thought I was having a heart attack in the kind of classic way you hear about people's, you know, first experience with a major heart attack. I wrote on the whiteboard in my office that I wanted to live because I was so certain something was happening. I went downstairs, infused, because I was like, maybe I'm having a heart attack. It will not be bleeding that's taking me out. So I went downstairs and infused. And then I came upstairs and I wrote on the whiteboard that I wanted to live. And I called her and she came home. And after that, I started a pretty rigorous therapy program. I started on different medications. I've now been on the same medication for a year and a half or so, and I think it's the right cocktail for me. Um, but it's been by force. It's it's, you know. I also think there's something, and I don't know if you feel this way, being, you know, public in our community and our space as well, but there was something about writing that piece. You can't put the toothpaste back in the j in the in the thing, right? So as soon as I hit publish, I'm admitting something that I can't take back. And in a way, that puts a certain amount of pressure on my own accountability. You know, it's kind of like when people are doing a new fitness journey and they'll post about it on social media. It helps stay accountable, that's why, right? So I was kind of grateful that I took Jeremy's comment to heart in the way I did because I've never quite thought about it like this, but I don't know if I'd be doing as well as I am right now if I hadn't started a process back in 2018 of trying to choke the word out of my throat and eventually publish it for others to read. So now eight years later, you know, I I still I'm I'm I'm fixed. No, there's still plenty that I have to manage, but I feel stable. Yeah. You know, I I don't I don't feel so thrown off. I don't, I I think I've got the right diagnoses, I think I've got the right medications, and it's been a long enough time now. And my wife, my therapist, my everyone's kind of seeing, like, yeah, something seems you seem like you're in a different place. And uh I am, but man, it wasn't without a lot of struggle, which when I think about other people, and you know, I spoke earlier about privilege. Um I worry that there's a lot of people struggling that don't know what they're struggling with, that don't know what to do about it. If they even have the wherewithal or courage or whatever it may be to say something about it, do they know how to take the next step? Do they know where to look? Do they know where to call? Um, and my fear is that there's still a lot of people that we're missing, you know, who, for all the awareness that mental health's gotten in the last eight years or so um in our community and culturally in general. In particular, I worry actually not so much about the young people. I think younger people have a healthier sense of self. And I, you know, teens, twenties, not to say people don't need attention. It's guys like us, actually. You know, it's it's middle-aged guys that I worry more about. And guys in particular. And it's not to say that women also don't have mental health needs to be addressed, but let's be honest. We men, we don't talk about it. Right. Right? Unless you put microphones in front of us and make a whole podcast and then we do talk about it for the world. But otherwise, if we were just being social, we wouldn't talk about it. We'd talk work, we'd talk sports, we'd talk kids, we'd talk. I'm not gonna talk to you about depression. Right, right. Right. But without talking about it, then it just sits in silence and we all just suffer quietly. And if we were just to talk about it, we'd realize how much of it is shared. That's what's been neat for me about um, you know, I've got a really good relationship with Sanafi. Believe Limited has a really good relationship with Sanafi, and they've supported a number of film projects, including the one I mentioned earlier about Nigeria. But one of the first film projects that they support, actually, the first film that they supported is called Let's Talk Mental Health. And it's a 45-minute film, features five community members, each of whom have a different relationship to a mental health challenge. And the whole concept was let's put on screen the intersection of bleeding disorders and mental health from at least five different perspectives and use that to open up some conversation. Let's screen this at patient events, let's talk to people in that talk back, tell them where they can find services, bring Debbie out, have her talk about, you know. And it was really powerful to see some of the conversations that emanated from that film. And so I'm I know we've made progress, and I know there's been, again, a lot of attention on it, but I do worry in particular about men our age and a little older who aren't necessarily connecting with the resources and education and opportunities that are out

Making Space For Messy Peer Support

SPEAKER_02 1:04:54

there. I don't know if you share that perspective or have a different take.

SPEAKER_04 1:04:56

Yeah, you know, I feel that um isolation is the enemy to personal progress. And I feel like that in my own journey, you know, they say the number one best way to learn something is to teach it. And I and I really have found that you mentioned the accountability thing of putting something out there.

SPEAKER_01 1:05:19

Yeah.

SPEAKER_04 1:05:20

Um I've watched this happen in my own life, I've watched it happen in many other people's lives, but we we try to engage people in conversation and and and tools that you've put together like that, for instance, that that film is such a fantastic way to sort of normalize the conversation enough to give people a platform to talk about it. I do feel like that most people that are you know in our age group and aging with human feel, let's just say it. I mean, I'm happy to say that now, right? We're middle aged, you know, we're we're sure in that place. But but people who are in our generation, maybe even older than us, that really should be doing a lot of the teaching. I just don't feel Like there's enough opportunity. And and and I would say that that it's a messy business. It's a messy business. We always want to have a social worker on site. We always want to have a therapist available. We always want to have that one person that's kind of got the license to do it. And and quite frankly, in my I personally believe that the enemy to to so much of our journey uh on a on on you know getting over that barrier, getting over that fence line, if you will, of of crossing over from being the person that's in need to the person that's contributing, oftentimes is it is that sense of professionalism that actually causes a sense of barrier to it. And and truthfully, you open that can of worms, and guess what? It's messy. It's messy. It's messy. We're not okay with messy in society. No, we're really. We want it to be clean. We want it to be well. But I just wish we could embrace messy a little bit more. There's no such thing as a toddler that is clean all the time. Nope. There's no such ever. And so when we learn new things, I heard somebody say one time about learning kid watching kids learn how to walk, that it's really not like walking that they do. It's more like falling and catching themselves over and over again. And there is a sense of like, I do believe anytime you're gonna learn a new skill, like for instance, educating your fellow community members when you really haven't done that yet. You know, friendship is a lost art. And and and in today's society, I think friendship is one of those big key missing components that that sometimes we don't allow for that space to exist enough, which is why I think things like camp or things like community events, chapter events, things like that is so so so so important. Yes. As long as we as organizers give space for that conversation to happen. Right. As long as we give there should be some guardrails, but but at least let's take risk. We all take risk every single day. Every person alive takes a risk. If you get out of your bed, you're taking risk.

SPEAKER_02 1:08:08

That's right.

SPEAKER_04 1:08:09

If you get in the car and put your seatbelt on, your reason you put your seatbelt on is because you are taking risk. Right. And I don't think in a communal sense we take enough risk. I think that there should be more opportunities for more people to contribute, more voices to contribute. I actually was in a chapter meeting in my local chapter when I was about 14, and I did not want to go. I was like, oh God, do we have to go to this? Like I was just as a you know, you're 14. Totally. And this is supposed to be for the adults. My parents are like, you know, uh, you know, I've heard people say, you know, that they had a drug problem growing up. Their parents drug them to everything they need to. You know, I was one of those. So my parents drugged me to this thing that I didn't want to go to. And I'm thinking, this is really for them. Why am I even here? It's a bunch of old people sitting around in a circle. Right. And here I am sitting in a circle. Now, looking back on this, I can realize this chapter event was not sponsored. It wasn't there was not some sort of like professional in the room. This was actually put together as a support group for newly diagnosed families to come. And there was an older gentleman in his 40s who sat down and he told this story. Now, keep in mind, this is at a time when there's no profit being promoted. There's no access is very difficult. We had shortages of factor at the time, even when it was available. Um, but this guy had survived all of that, and he had he was sitting there and he said that he would have these chronic inner cranial head bleeds. Chronic. And it was like, what in the world? And so he figured out what was going on, and his testimonial was basically he sat in the circle and said, I finally realized that I would get out of the shower every morning and I would go boom, boom, boom, boom, boom, and shake my hair to get the water out of my hair. And eventually we realized that my wife and I talked about it and figured out that's when I was getting these head bleeds. Wow. And he said I would get terrible headaches and then pressure would build, and it was just and then I'd end up at the hospital, and then they would eventually go, You're you're having a head bleed, and they'd give him infusion and he would get better. And then a couple weeks would go by, a month, whatever, and then he would have this again. Well, anyway, they narrowed it down as that this is what's going on. Well, that scarred me for life. I'm 14 and I'm going, because guess what? At 14 years old, what do you do when you're a teenager and you get out of the shower? Shake your head like a wild weirdo. Yeah, sure. And so I was doing that, and I hear this guy give that story, and I'm thinking, well, I don't want a headache and a head bleed and the hospital visit and blah blah blah. So I stopped shaking my head after the shower.

SPEAKER_02 1:10:52

Every time I got out of the shower, from then I was. I was afraid you were gonna say I stopped taking showers.

SPEAKER_04 1:10:56

I almost I considered it. Matter of fact, at 15, 16, that's probably realistic. Fair enough. But that was the thing, was that it stuck with me. Yeah. And you know what? There wasn't a professional in the room, it was just a lived experience at its best. And you know, that that forever marked me. I don't feel like we do enough of that. Is that the FDA label reading that we all are sort of conditioned that some attorney said that we had to do it that way? No, but man, if I could go and reorganize all of how we do things in this community, I wish we did more of that. I wish there was more of the organic lived experience that's really truly allowed to be expressed. And because we all have tips and tricks. I mean, I'll never forget. They used to tell me all the time, like you can't you can't use the same vein over and over again. Yeah. Well, I was a rebel, you know? I always have been a little bit of a rebel. So here I am using the same vein to this day. Uh-huh. And I'm thinking about gene therapy down the road, going, if this thing goes out, I I don't I can't stick anywhere else. I'm really up a creek. You have other veins, John. I don't know. I only have one vein, Patrick. This is it's right here. It's purple too. And I'm sure it is. It's a clinic, actually, for my annual visit the other day. And they're and they were like, uh, I they were like, Do we want to take bloods or roll up my sleeve? And I'm like, yeah, just use old faithful. And they were like, that doesn't look good. And they were like, uh, that looks bruised. I'm like, no, that's just scar tissue. Just go ahead and just, you know, push it harder, you know, it'll get in there. And they're like, no, I don't think so. We're not gonna go there. I was like, okay, whatever. But the point is, is that, you know, I learned it my way because it was my way. Is that the correct by the book way we should do it? Probably not. But but you know, I I also it was a very common thing that was taught to use tourniquets every time you I don't use a tourniquet when I infuse to this day. Hey. So you are a rebel. I'm such a rebel, I know. I'm not saying that that's the right and wrong way to do it or whatever. I'm just I'm not, I'm not a clinician, I'm not a nurse, I'm not a but maybe there's things out there that that for people to learn from each other is is probably the best way for us to learn how to advocate for ourselves too. Yeah. And I when we talk about things like mental health, it going from being a being a person being talked at to crossing over that fence to being a person who's talking to sometimes can be the best way that people learn how to do it. One last example, I'll share with this. I was the worst at sticking relentlessly to my profy schedule. I was probably the worst at it. Um, now we didn't have profi until I was an adult. I mean, that wasn't me being promoted, really. It wasn't until after college that I might have even been married for a couple of years before I got on Profi. Okay. I was 25 when I started Profi. That doesn't mean that's it wasn't being talked about at every annual visit. It was just, and so one time I I was just talking to my um my doctor about this recently about we were reminiscing about my stupidity as I was younger. And uh and we were talking about how, you know, there was this sense of like, oh, well, you're already taking factor like three or four times a week, but after a bleed, like just do it before the bleed, you know. Right. Anyway, at some point, probably because of my wife, I finally uh a uh a switch flipped and I started doing it. But this was another example is that when I started to give way before hope was around, I would go to dinners and share my story, and I would be a part of the community and go on your chapter events and doing things like that. And it wasn't until I started giving my story that I said, I can't be a hypocrite. Keeps you accountable, yes. And to your example of talking about depression openly, it was like it gave you something to say. I gotta think it, I gotta, I gotta like really think about this. If I'm gonna put it out there, I gotta think about this. And I I just think if if there was anything we could do to improve what we're doing as a community, I just feel like more of that organic talk is is is so needed.

SPEAKER_02 1:15:04

And well, no pressure on you, but as the entity behind the Hope Conference, yeah, I hope you protect those spaces as best you can, especially as I mean, the the way that conference has taken off, the attendance you get, yeah, yeah, it's incredible. And I hope with it is coming more sponsorship and support and all of that. At the same time, I have to believe that part of what is making that meeting special is that again, lived experience, you are protecting the opportunity for that kind of intentional dialoguing to take place. Never lose that. And I know you know that. I guess I'm just trying to be another voice saying, like, that's so important.

SPEAKER_04 1:15:47

So true. So true, Patrick. It's so true. We're trying. I I think every year we we try to get even to the point where we're doing better in that. And and I I look forward to the future of continuing to grow because to me it gives us another opportunity. And of course, having conversations like this publicly keep me accountable to yep.

SPEAKER_00 1:16:08

Sorry. So yeah, no, it's good.

SPEAKER_04 1:16:10

No, it is exactly what's needed is that we need this, we need more of this. We need more of this. You know, it's it's uh, you know, I I do think that, you know, I I tell people all the time, I burned the ladders a long time ago. We build tables at hope. You know, we build a place where people can sit around and and fellowship and hopefully form genuine friendships. That has been my lifeline. You know, that has been the thing that has kept me afloat in my my hardest moments and my hardest days. And and uh I certainly hope that we can continue to build a community that that has the opportunity to build that. I I've done like you, we've done a lot of work in other rare disease communities, but there's no other community out there like that has what we have in the bleeding swords community. And I sincerely hope that we can but but I still feel like there's so much more, so much de more depth that we can have. Yeah. That's where we get back to a place of where it's really ours. I do feel like that there's an element of life is moving so fast, and there's so many demands on all of us, and everybody's trying to seek attention for whatever it is that they have to seek attention for, and that's not necessarily wrong.

SPEAKER_03 1:17:22

Right.

SPEAKER_04 1:17:22

But but at the end of the day, you know, I I like what Stephen Covey says where he says you have to prioritize the important over the urgent. Sometimes the urgent is not always the most important thing.

SPEAKER_03 1:17:33

Yeah, I struggle with that.

SPEAKER_04 1:17:35

And and social media is an enemy of that in a way because it's constantly like giving it away. So the email inbox. Oh, yes. I mean, work just itself is can be a demand. And it's like, what can we do to sort of really prioritize the important things? Because if we don't, we may lose the very beauty of our community connection that we have as it stands today. But I think it can even get better. If we're intentional, I think we can give it even get better.

SPEAKER_02 1:18:01

Well, when we talk about bleeding disorders, right, not just hemophilia. And as a community, we've gotten more uh aware of that in the last number of years. In theory, there should be a whole lot more of us. Right. Right? VWD affecting one in a hundred people, put all the bleeding disorders together. Right. We should be as large as we've ever

Real Access Gaps In The US

SPEAKER_02 1:18:20

been. Right. But we're not. And part of that may be as the population is a gen of people with hemophilia anyway is generally healthier than it was 10, 20 years ago. Okay, I can understand if attendance to certain events in certain moments is down, if the need in some families is down. That's a good thing. We should be celebrating that. But there are still families out there who are not connected who do need this. I mean, you're talking to them. They're I can't, let's go. You mentioned this an hour ago, so forgive me for calling back something from an hour ago. That's okay. Did you say 768 phone calls in two weeks? Yeah.

unknown 1:18:53

Yeah.

SPEAKER_02 1:18:54

Is this, I mean, that's not that's a crazy number, man. I can't like uh I'm sitting here for an hour talking to you and also being like 768 phone calls in two weeks. Like that's just that is so many phone calls. How do you how do you literally process all of that?

SPEAKER_04 1:19:07

Yeah, well, it's not me by myself. We have about 20 folks that are that are that are you know taking uh those calls. But I I I just, you know, we it is a lot. It is a lot. And everybody is kind of at a different need level. Some of those people are in process, but sure it is a lot. We hear a lot of people that are that are, you know, we're we're what we try to do is just organize the needs and then try to do what we can to serve those needs. There's never enough arms, legs, and feet to do it though. That's that's why I think it's so important for us to stay consistent. It's just like Profi. Profi is no good if you don't actually stay consistent. Right. Let's say you do it for three years and and unfortunately, like like your brother, as an example, like he misses a year or two.

SPEAKER_02 1:19:53

It it's devast it's it's the end. And just to go off that for a moment, my brother's example is obviously a worst case scenario. Yeah. But what's much more common is people fall off their regimen and they're just doing little insidious, irreversible damage day after week after month after year. Right. The the kid who dies is dramatic, and it, you know, it it that can also happen. Yeah. But I think don't think, oh well, I don't I've I'm alive. I'm not doing my profy as I'm supposed to, and look at me, I'm doing okay. Are you really?

SPEAKER_04 1:20:25

Research shows, it's proven to us one significant bleed in a joint can produce irreversible damage in that joint. Period. So why risk? Why take the risk? Yeah. And and look, we see this constantly. I I would be willing to to put out there, we're doing a lot more to try to understand the needs of the people that are coming to us because there's usually some sort of event or precipice as to why people reach out. I would imagine. Um, and so we try to do as best of a job as we can and sort of triage that need as it stands, right? Um, but we're trying to do a better job of also understanding like what was it that led up to that? Because sometimes it's not as obvious as you might think. Like sometimes it's that they've, you know, this matter of fact, we just did a survey, a patient survey, um, on this, and we haven't released all the data yet. But one of the data points that really stuck out to me was that something like close to 60% of the people that we surveyed that had come to us for financial aid or whatever said that if they had not gotten financial aid, the number number one thing that they would have been at risk for was food insecurity. Now I believe it or not, where you live, what car you drive, what cell phone you have, it kind of goes out of the door when food insecurity is on the table. Sure. So so it's it's striking to me like how many people are really, really, really, really, really at the end. Another thing that came up in that that survey that really was striking was that I want to say it was in the 30s, but say third, let's just say 38%, and it was roughly that people responded and said that they had already sold personal items to get to treatment or to access their medication.

SPEAKER_03 1:22:07

Wow. That is not good.

SPEAKER_04 1:22:10

So the fragility of the system is so, so we're on so thin ice in the in in in in this day and age. And so you wonder what boulders people are carrying in their backpack way before they get to the place of even reaching out and saying, Hey, I need help. Right. Well we've we do find that so many people um come to us for assistance, but but many people well we did a survey about um trying to uh last at the end of last year trying to understand people who like uh who didn't ask for help, which is kind of hard to find these folks, but we did we did ask very much. I know. Well, it was people that had maybe been to an event, but they never requested help from a financial program. Got it. And so we kind of surveyed some of those folks and we said, Well, uh why have you ever been through financial uh need? And they said yes. And so then we asked the follow-up question, why didn't you ask for well almost 40% of those folks said they didn't even know it was available? And these are people coming to your meetings, these are people that have already been to our meeting. Then we say, How many of you, where did you learn about these programs? They said, Well, 20% of them said that they learned about it from an advocacy group, maybe, maybe, maybe a maybe a chapter or you know, a national organization. So there's good work being done, and it sort of makes sense. The numbers almost resonated with what we all already knew, but like the education curve was like, oh my gosh, like we could do a better job of just explaining what programs exist out there.

SPEAKER_03 1:23:36

I guess so.

SPEAKER_04 1:23:37

You know, and and also there was a whole nother subset of people in that survey that also said that they couldn't, uh they didn't think that they were deserving, or they didn't feel like they were embarrassed to ask. I was afraid you were considering that, yeah. So, but oddly enough, out of the list of we asked the laundry list of, and we'll be publishing this data. And matter of fact, uh hopefully we'll be doing some posters on this kind of data soon. But but one of the things that we learned in all of that was was only 14% of people that responded on all of that said that they had never done any of those things. 14%. Sold personal items, gone into debt, you know, what what are borrowed money from friends and family? Only only 14% said, No, I've never done any of that. So the reason why I feel like that that's important is that there's there is still so much work to be done. There's so much work to be done. We talk about these things like such as setting the table so that people can be honest and say what their journey is like. Maybe we need to say some things that are a little off script, yeah, so that we can get to a place of healing and stability. Maybe we need to be able to be honest and not be insecure about asking for help and raising our hand when we need it. Maybe we don't know where to go. Maybe we just need to encourage people to say, hey, check this out, check that out, go ask these people. You know, like there's you know, it it's striking to me. I I think about this in communication with like social media and text and email. I mean, when when I was growing up, you're saying is like we had a phone, you know, that was it, you know, and a fax. It was my dad's office if you really wanted to get crazy, you know. And now we have all these other ways to communicate so much more readily. And I find that in society, and especially I see this in our community, with more tools of communication, we still have almost seemingly less connection with each other.

SPEAKER_03 1:25:28

Yeah, I don't disagree.

SPEAKER_04 1:25:30

So I don't know what the answer to that is, but we're all doing our part to try to do as much as we can. But at the end of the day, some of it has to come down to the fact that we need to lean on each other's strengths and we need to also be vulnerable enough to say, I need help.

SPEAKER_03 1:25:47

Yes.

SPEAKER_04 1:25:48

And those things combined, I think over time can produce a better outcome. But we need to be okay with messy and we need to be okay with, you know, for those of us who organize things, we need to take risk where it makes sense. I like to put it this way, you know, is that it's so important to take risk in the direction of the mission. Oh, I like that. There's a key principle there is that like we all take risk, but I want to if I'm gonna buckle that seatbelt, I better be going to pick up my kids from school. Yeah, you know what I'm saying? Like if I'm gonna buckle that seatbelt, I want to be going to I don't want to get in a car accident on the way to somewhere I shouldn't be, you know. I mean, I don't want my legacy to end up being like where was he going? You know what time was it? Fishing at two o'clock on a Wednesday. No, I I don't know what that is, but it's like there's a there's a sensibility of like I have to take risk, but I want to take risk in the direction of the mission. To me, the mission is health and wholeness and stability and supply and and and and and living in a place of you know, I think it starts, you know, with us taking steps in that in that manner. So if we do it, I think others will follow. I think others will do it too. But, you know, so much of this journey for me has been very much of, you know, getting out there and saying it and then going, crap, I gotta live by that too.

SPEAKER_02 1:27:09

Yeah. Well, that comes back to the the best way to learn is to teach, right? It's kind of if you're out in front saying this is how it's gotta be, well, guess what you better be doing. You just reminded me of something I haven't thought about in a long time, though.

Bon Jovi Story And Risk

SPEAKER_02 1:27:22

I always talk about risks for the mission. I was in a Bon Jovi music video. What? Fun fact. I was in a Bon Jovi music video. Heard it here first, kids. Yeah, that's another thing I don't think I've ever talked about on my own show. I've been doing a podcast for 10 years, Jonathan. What? I don't think I've shared this. But I was in a Bon Jovi music video as a camp counselor. It's called Superman Tonight is the name of the song. And the concept of the video is all different superheroes from everyday life. So there was a firefighter, an EMT, or whatever. I'm there as a camp counselor. Okay, there was a part where you got to hold up a placard that said, you wrote on the placard what you did or that makes you a hero. Of some kind. So one guy donated his kidney to a stranger, and so his plaque said, Like, you want a piece of me? Right? Like kind of funny. Had kind of like a Tony Soprano look. So that was his bit. So I wrote on my thing, I make kids smile at all caps. The double H ranch. So one of the producers come, we do a take. One of the producers comes over and is like, Yeah, um, I think maybe if we could just remove the name of the camp uh specifically, you know, in something a little more general. And I was like, Oh, they gave me permission. I can use their name. It's okay. He's like, Yeah, I just think maybe for this next one we'll try something without it. And I was like, no, no, it's really, it's fine. They're they're okay with it. And he went, okay. And so sure enough, there I was, oh, double H ranch. Well, you can be sure I was cut from that part of the video. And I I spent too much time thereafter being like, man, I blew it. I was they were trying to tell me they can't use it if it's got the and I was just too pigheaded. I was too, but then I had another moment. I was like, I don't give a rat's behind about being in a Bon Jovi music video. This isn't important to me. What would have been important to me is if my appearance in that video gave that camp something that they could point to, plug, and fun raise off of. Right. That would have been dope 8F. Right, right. So I took a risk for the mission. There you go. And I got cut from a lot of the video. That's right. But it was worth it. That's so awesome. What a great story. Superman tonight.

SPEAKER_04 1:29:25

Oh my gosh, that's so cool.

SPEAKER_02 1:29:26

Yeah, you can look it up. You'll see me. I'm still in it.

SPEAKER_04 1:29:29

Not as much of it, but I'm still in it. You know, it brings up an interesting thought about regret, and I and I do think about this a lot, is that if you take risk in the direction of the mission and it doesn't work out, then I think it gives, I think you can live without regret because you're like, yeah, I left it all on the field and didn't work out, it didn't work out. That's right.

SPEAKER_03 1:29:48

That's right.

SPEAKER_04 1:29:49

I have a um the chairman of our board actually, he used to say this all the time. He's like, at hope, we do experiments. He said in the lab, he goes as a scientist, he says, if you do experiments, you actually are are when you have something that fails, you actually celebrate it. Because you're like, that's one thing I don't have to clear. Yeah. And I just think that, man, that's the approach that we need, you know, so often. And the pressures of life are so, so, you know, of so much magnitude, and and and and it's like, man, there's so much on the line. But I think if I had started out on this journey of trying to do what we do with hope with financial assistance from the perspective of I've got to say yes to every single person who approaches me, I don't think we would have ever done seven million dollars of giving to help people. Because we probably had 20 million dollars of requests that have come through the door. Now, of those, I'm proud to say that we have been able to say yes to almost every need that was directly affected by a bleeding disorder. Like if it was directly a medical situation, we have been able to say to a large percentage of what we've been able to do. We call those tier one requests. And and we've been able to say yes to a large percentage of those requests over time. And so um, to me, that's that's great. Now, pretty much everybody feels like their request is the most important, and I agree. I feel like it is too. That's one of the things that drives me every single day to ask people to get donate more. Um, but but at the end of the day, we've provided a platform for at least somebody to feel like that they're not alone. They have somebody to talk to. And most of the people that are on the phones are people that have lived with bleeding disorders in their family. They understand the background, they know what they're going through, and just that sometimes a calm, caring voice in the midst of a crisis can make all the difference to help people feel like that they're just at least they're just not alone in it. Right. And that'll I mean, that for me has been it has been my story. Yeah, my story has been the community itself keeping me afloat when I didn't want to necessarily be a boat. Yeah, absolutely. It was like a song in the in the making.

SPEAKER_02 1:31:50

That was the beginning of a song. I didn't know you had that in your back pocket, just whipping out songwriter skills. Get me afloat. Yeah, I didn't know what I didn't want to be in a boat. Not bad at all. I was actually just with last weekend with uh a fellow Blood Brother who is a musician, and fun fact, was in the Phantom of the Opera in Vegas for seven years. What? But to learn more, you'll have to wait for the documentary Rare Blood coming into 2027. You heard it here first, kids.

SPEAKER_04 1:32:14

This keeps coming out, Patrick. I feel like we could do this all day. I think we could. That's awesome. Well, I just am excited to know that that um, you know, when I think about all of the things that all of the big problems, I I do believe that it it's true that whatever you focus on the most, you will gravitate towards. And for me to hear that you're focused on things that are important, there's a lot of problems in the world that you nor I can solve. But you're laser focused on what the work is is being done at the World Federation and how to serve people that are getting nothing and have no access, period, you know, and and and also trying to resource the community with the right kind of content that helps to bring inspiring conversations to life in our everyday um goings and and and doings. And I just because of you being focused on those things, knowing that your heart for that is truly for people just like you and me that need uh little encouragement along the way is just inspiring and it helps keep me going. And so uh thanks for all that you're doing. Thanks for all your hard work and sacrifice and dedication and the risks that you've taken in the direction of the mission. And uh I appreciate the work that you've done. I appreciate the sacrifices you've made. That I've seen just a small fraction of them. I know that there's far more sacrifices you've made that no one has seen. And so, anyway, I just on behalf of my family and the whole community, I'd love to say thank you so much for the work that you've done and the work that you continue to do to make the whole community better.

SPEAKER_02 1:33:51

Well, that was very kind and hard to take in, but it also all right back at you. I do think in many ways we're on parallel paths, you know, focused on different things, doing different things, but um for the same community and with a similar driver behind it. So uh I take inspiration from you as well. And I also from this conversation, you know, one thing that I'm gonna take away is it it starts with guys like us. Whether it does or not, I think it's helpful to believe that it starts with us. If we want things to be a little messier, right, a little more like life in that way, then we have to be willing to be a little messier and let our mess show a little bit more. Um, and knowing that I'm not necessarily, you know, the only one doing that, knowing like, no, Jonathan, he's out there doing it too. And there's others out there who are willing to put themselves out, be a little messy, try try things a little differently. Um, that gives me courage. So you keep it up and I'll keep it up, okay?

SPEAKER_04 1:34:50

Yeah, sounds great.

SPEAKER_02 1:34:51

Thanks so much.

SPEAKER_04 1:34:52

Thank you,

Gratitude Takeaways And Closing

SPEAKER_04 1:34:53

man. Well, I want to say another big thank you to Patrick for joining me for this conversation. I hope that you got as much out of this conversation as I did. What a uh treat and really a privilege to be able to have a moment like this with such an incredible guy who's doing so many incredible things for our community. I hope that you enjoyed this enough to be able to share it with your friends and family. And if you would, take just a moment to like and subscribe. We'd also love for you to be able to copy the link down and text it to a friend right now. This helps us to be able to get out to more people who need to hear it. And I know that there's plenty of us who need, who are probably thinking of people that you know right now that should have been in this conversation and listen to more of it. We also have this episode available on listening only through audio channels. If you haven't checked that out yet, you can find us on Spotify, Apple Podcasts, and all of the major podcast channels. And uh, we would love for you to be able to uh get more content just like this. I want to say one more big thank you to our episode sponsor, Janintec, for making this episode possible. And thanks so much for listening, and we'll see you in the next one. Take care.