Building The Noise with Steve Van Wormer: EPISODE 015

SPEAKER_00 0:00

Substitute uh pediatrician. She took a chest x-ray uh just to see if his lungs were clear, which they were. But what she noticed, and she called us the next day to say, look, you know, his heart is kind of enlarged, and enlarged in a way it's not supposed to be. So they referred me to a cardiologist, my wife and I. And they did a series of tests, uh, you know, um ultrasound and EKG and all that kind of stuff. And that was such a blessing because that was really an early indicator of an enlarged heart, which ultimately got us uh scene at UCLA Mattel Children's Hospital, which started him on his um PH trajectory.

SPEAKER_01 0:36

Welcome to the Building the Noise podcast. Ladies and gentlemen, welcome to Building the Noise. Today I have with me Steve Van Wormer, who manages the PH Aware Global Association. PH Aware is focused on ensuring that awareness and advocacy are focused on patients and families surviving with PH Aware and those that unfortunately lose their battle as well. And he leads their content creation team, helps to develop programming, and communicates the uh campaign goals and timelines with various stakeholders, which we'll talk about today. He also serves as the executive producer and the creator of the Aware That I'm Rare podcast, which we will be linking to in our show notes, and is devoted to raising global pulmonary hypertension awareness with over 600 dynamic stories, which is an unbelievable feat when it comes to engaging with patients and sharing their stories. So, Steve, it's a pleasure to have you here today. If you don't mind telling the audience about PHWare and the global association's focus.

SPEAKER_00 1:37

Well, thank you so much, Matt. I'm so happy to be here. You know, it's uh, as you said, we've uh done 600 episodes of a podcast series over the last 10 plus years, and it's amazing. It's strange to be on this side of the mic, I'll tell you that. Uh but uh but PHWare is a uh a nonprofit um advocacy group that is about uh that was started in 2015 um by uh a number of people, uh uh parents and uh caregivers, patients uh that uh were affected by pulmonary hypertension. And for those that don't know what pulmonary hypertension is at a very basic level, uh the the if you think of your lungs as uh as an upside-down tree and all those branches of your arteries and your lungs, basically they become uh uh hardened and tightened and in and shrink uh over time as as the heart works harder and harder to push blood through your lungs less and less effectively. And so uh there's a lot of um many um many different therapies that are out there these days. Uh uh 12 plus plus drugs that do different things. One that your listeners may be familiar with is uh is Viagra as one of the early ones as an example, it would open and relax these arteries. And so um my kind of connection to this organization, uh, which like again said was started in 2015, is I had a son, Lucas, who was diagnosed with idiopathic pH uh when he was six years, uh when he was four years old in 2006. And at that time, there was only a handful of uh of therapies, and none of which were uh available for children, uh in pediatric use, that is. And so any of that use for for for patients were used off label, but uh, but um I don't want to get sidetracked here other than to say that we started this organization to to really advocate for for um for patients and families and those impacted by this disease, which it it impacts uh people all around around the world. It doesn't have any boundaries. You can be any age, gender, uh any uh, you know, uh male, female, and and uh uh it just it it really impacts people uh in a devastating way. And so we we got together and really tried to uh to to devise a mission to use innovative technology uh in the early points of this. This is we started this in the kind of the early days of uh of uh Facebook and all that and social media and use innovative tech uh through apps and and various things to connect people uh globally and to connect people in very hard-to-reach remote areas. And not just not just remotely uh geographically, but remotely mentally, remotely uh just just because uh people are isolated in many different ways.

SPEAKER_01 4:32

Yeah, and no, it's a it's a great point. I think that there's such a uh misunderstanding of pulmonary hypertension. You had referenced Lucas, your son, who was diagnosed at four, and most people hear anything pulmonary or heart-related or lungs and think elderly, you know, uh older in in in life, but your son was four. Yeah. What was tell me tell me a bit about that.

SPEAKER_00 4:56

Well, at the time, you know, he we just had a four-year-old kid who was basically spent um, he was in preschool, he spent um the good part of the year, basically from January into the uh into the fall, kind of on a downward trajectory. And it's not unique just to Lucas, but to many patients. Uh this this disease is misdiagnosed as asthma, or uh, you know, just in in his case is asthma. So he was taking nebulizers, which were like basically, you know, opening the throat and things like that, but that is not the the the what's helping, and that didn't that didn't help. And and and so, and just as a quick side note, and a lot of people, they could be men, women, whatever age, they could just say, Oh, you're lazy, you're you're heavy, you've got to do more, and and that's actually a more of a detriment in the in those cases. But but in Lucas's case, so we spent about nine months uh going to different doctors, and thank thank God, because we went to this one uh to his uh pediatrician's office when he just was not doing so great in this uh November air at the time in the fall. We're like, oh, maybe he's got like you know pneumonia or something, and yeah, just wasn't doing well. And by circumstance, the uh the his his uh pediatrician was not there at the time, and that one, kind of in hindsight, was not really a big fan of doing x-rays on kids. So there was a guest, you know, a substitute uh pediatrician. Yeah, she took a chest, she took a chest x-ray uh just to see if his lungs were clear, which they were. But what she noticed, and she called us the next day to say, look, you know, the the his heart is kind of enlarged, and enlarged in a way it's not supposed to be. So they referred me to a cardiologist to a cardiologist, my wife and I, and they did a series of tests, uh, you know, um ultrasound and EKG and all that kind of stuff. And that was such a blessing because that was really an early indicator of an enlarged heart, which ultimately got us uh scene at UCLA Mattel Children's Hospital, which started him on his um pH trajectory.

SPEAKER_01 7:01

Yeah. And and so again, because of your pediatrician being out and another one willing to do something different, and I hear this from pay I hear this from patients all the time. It's trying to find the person that's willing to not just follow the cookie-cutter way of doing things, but do things a little bit differently that ends up being all the difference. Um go ahead.

SPEAKER_00 7:23

I I would just say that, you know, the the at least with this disease, and I'm sure it's true of others, is is doctors really want to go to kind of the easiest um uh thing that's wrong and try to to calculate from there. And there was a campaign about saying uh uh describing if you hear hoof beats, think horses. And but sometimes you got to think zebras, and pH is a pH is basically a medical zebra. So it's it's this is really a a long game that uh that that we work with for here and in other advocacy groups across the planet, which we've happened to we've we've uh collaborated with over the years, they you really patients really have to advocate. You have to have you know caregivers that advocate for you, doctors that advocate for you, and and you know, in in doing uh a number of these podcasts, as as we mentioned, uh I cannot tell you the number of people that have told horrific stories and being passed around because most of these um in the world of pulmonary hypertension, the the uh most patients go to two or three doctors before they're diagnosed over the span of maybe two, you know, a year or two or three years. And um back in the day, when you were diagnosed without any treatment, patients were only living a couple years. So you can see the kind of the dichotomy of of that. And so, you know, getting to uh specialists and to a doctor when you have a splinter in your brain that something's wrong, and I I would just encourage any patient of whatever um ailment you may be uh ultimately um suffering from to just really fight for yourself to make sure that if you know something's wrong, if what people are not telling you is not uh jiving with what's what you know in your mind, because even that by the way, at that point, a lot of these patients have told me over the years that all the people just say I'm crazy and they want to refer me to like a like mental health doctor or something. So it's it's it's a it's a tough diagnosis.

SPEAKER_01 9:29

Yeah, and and as you referenced, if you when you feel it in your gut, trust it. And so many patients don't trust their gut and they go along with what they're being told or what they are hearing, but not what they're feeling. And you know, obviously, when folks are able to find groups like pH aware, they're able to understand and and to see, oh my gosh, there are people like me. So how did you even think about, you know, was PH Aware even uh an organization when you when when you came about it, or was that something that you started?

SPEAKER_00 9:58

No, uh at the time uh there was really only uh one uh that I knew of uh um PH uh uh charity charity, nonprofit in the in the uh in the United States, yeah. Called Palmonary Pomerania Hypertension Association. That's an organization that's been around uh for a long time, 25 plus years, I believe. I was a board member for many years. Uh and and ultimately um at some point in back in 2015, uh there was another group that spun off, uh another great advocacy group called Team Phenomenal Hope. They another PH advocacy group. We spun off as employees uh or board members uh of PHA and became and started this one. And the kind of the reason being in different advocacy groups across the world had different focuses. At the time for us, um, myself, uh there was another uh board member, co-founder. Uh we both had um had uh uh pediatric kit kids, you know, that were suffering from this disease. And uh another one had uh had lost uh uh a child. Uh there was another uh member uh who was uh a patient who had another form of pulmonary hypertension called CTF, which um we can get into later, but it it's basically uh a type of uh a very rare diagnose uh uh uh form of pH that is that is curable, but they go in and basically the very 30,000-foot view is they rotor rooter out your uh your arteries uh and lung and and and you're like put in a deep freeze, and that's a whole uh I that those are such amazing stories of the number of people that uh that have uh uh thankfully have uh that that um uh opportunity to potentially be cured from this disease. But uh but that said, uh pH uh pulmonary hypertension is not a curable, it's a progressive disease, so patients get worse and worse over time. But thankfully, when Lucas was diagnosed, was the moment that uh the medical community had figured out uh combination therapy and they could attack this disease from a couple different pathways. So he was a fortunate responder at that. And and since that time, like I said, we went from to eight therapies to 10 to 11 to 12 to over a dozen today that attack uh that attack this disease in many different ways.

SPEAKER_01 12:22

Yeah. And what I've loved about PH Ware is, as you said, that innovative approach that you guys are taking to not just empowering patients and being available, but going out and helping to find patients and to educate the community, but also uh developing new tools and resources. Tell us more about how you guys have been so innovative, which is one of the reasons industry loves to work with you all. Um, but at the same time, your willingness to do that extra for patients.

SPEAKER_00 12:51

Well, I uh you know, in my in my case with my wife and I, Marina, um Lucas uh was diagnosed relatively quickly, even though he was on a downward trajectory, he did, he was flagged. He we we got to a great uh center at UCLA, and uh he responded very well to um to therapies. We never had a problem with insurance, with specialty pharmacy. So our pathway was relatively uneventful. And it and again, I'm not the patient he was, but he was a robust responder to oral medications, which is the kind of the lowest impact uh um form of therapy for pulmonary hypertension. There's also inhaled or IV-infused pump therapy, uh uh among others. And so uh and and so being that he was doing well and did well and thrived uh made it easy to to wrap my head around that as just as one of the people in the organization. And so what real what I really thought about really from day one and meeting people at various conferences or support groups or whatnot, is that I always picture in my mind someone, as I mentioned earlier, isolated. I I think of like you know, uh uh a 65-year-old woman, grandma living by herself with that's on Medicare or something, or or I think about the parent that's in the remote uh of the remote village in some foreign country somewhere that doesn't just take the 405 to to the to the UCLA clinic, you know? And and it's really about okay, how can we do storytelling or or or uh or create um awareness for these people or bring people forward and uh to to this disease and make people aware of this so they can in theory uh you know go get um get checked for this. And so ways we did that early on, I would I used to work at Fox, and so the same people that worked on uh in the promo department, so the same people that worked on the World Series and the World Cup and the uh and the Super Bowl were people I leveraged and friends of mine and composers, and we made PSAs and we made them uh in a time before Google Translate. So we made them in like 45 different languages and we spread them all across the world. And that's really what was the seeds of connectivity for us when we started. And and at the time, uh also we were, you know, um, because of that combination therapy that I mentioned earlier, uh this disease back in the early 2000s was really kind of seen as a disease that mostly impacted women uh in their 30s or 40s. That was kind of the general uh patient. But over the years, men were getting diagnosed, kids were getting diagnosed, babies, etc. And through the the miracles of uh therapeutics that uh they these combinations that patients were living longer and longer. So they were transitioning from kids to adulthood to college or whatnot. And so that's again why one of the primary focuses is why we started, because we were trying to help push content and in big information and data for in hopes that uh you know uh pediatric therapies would be brought forth, but also to make just global awareness, right? And so we were myself and partners were kind of working in fields of of data technology, you know, creative marketing, etc. And so that's the kind of tools we use to connect to people. Now, you know, this is when the early days, you know, the somewhat early days of the internet, and and just people used to go on message boards, but now they were using social media or we were making clips that were that were that that just made it easy to to tell stories like through a podcast. So we started, you know, I started that podcast not knowing what we were ultimately going to do with it, but it was really a a quick turnway of not just getting patients to tell their stories, to share their to share their um journeys, because I ultimately believe people just want to be heard. You know, there's like that or or or that the the really common thread uh is that a lot of patients their spouse doesn't understand, their kids don't understand, their family, their coworkers. Why aren't you coming to bowling? I don't understand why you don't go to do this, why aren't we doing this? So so when we create when we do a podcast, is that we give them a tool that they can share with their family and they can sit down and have a raw conversation with us so they so that hopefully their people, their circle, their community uh uh understands them and ultimately gives them a tool in which they can go out to their um uh local media or tell a story whether they have a walk or or or or or something along that matter, you know?

SPEAKER_01 17:53

Yeah. It's so true. So everybody just wants to be heard, especially when you're going through it. Um and you know, I go back to when I was in chronic pain, and that you just feel like no one knows what you're going through. And the last thing you want to do is explain it to somebody, right? Um, and so to be able to sit down, have a conversation with someone like yourself who's been there, um, but even just to be heard and have an outlet or to hear of others that have been through it, now you're helping to level the playing field and to empower and provide hope to others. That is really what this is all about.

SPEAKER_00 18:29

Yeah, and I'll tell you one other thing, uh, Matt, is that the beauty also is with our platform is we've also connected with the best doctors, the best minds, the best nurses on the planet. And so over this, over this tenure, I'm I'm blessed, I'm truly blessed that that we can virtually call up um any cardiologist, pulmonologist, pH specialist. You know, we I attend um conferences like chest or ATS, for example. And I we can bring, we can talk to the the doctors when they're doing these amazing presentations, which 20 years plus in this uh disease state is still so much above my mind in the scientific aspect of it. But but they will distill that down and speak to a patient and caregiver audience. And so again, when we go talk about isolation or or separation, whether it be across state or you know, people with insurance issues that might not see a specialist, that might not be at a specialty center. And so we can bring the best minds in the field to explain to these patients to give them the consultation they might not get the opportunity to have otherwise, or to learn about uh this patient or this person who went through a clinical trial or this nurse uh of how their um how they their doctor-patient relationship is. And so it's really about um just kind of opening the door and and opening the your mind to to you know what different ways this disease is being uh fought across many uh uh fronts.

SPEAKER_01 20:08

What would you say is the most misunderstood component when it comes to helping to run a nonprofit? What do people not understand? May it be the way you work with industry or something else?

SPEAKER_00 20:21

Well, I can tell you I never thought I would be here today. Okay. You know, that's like I I I I I'm originally from Michigan. I moved out here in the uh I'm sorry to hear not uh in the in the uh early 2000s uh and uh or excuse me in the early 90s, and uh I was working in the entertainment business. And then so when we had our kid, great, and and and but when he was diagnosed, we were thrust into this world. And so yeah, that's why it was it was uh a blessing to find a place like the Pulmonary Hypertension Association and uh uh and to find support groups and uh and ultimately, you know, like I said, we had great care at UCLA with our uh our pediatric uh uh cardiologist, Chuck Alejos. He and uh uh Dr. Jackie, who's a very uh well renowned uh doctor at uh Los Angeles Children's Hospital, we started the first pediatric support group in the United States in those early days. So, like so just figuring out and connecting and you going to conferences and and various meetings, like we mentioned, that you meet people and and uh and you realize that you're not alone in this because like with any disease state, uh people feel isolated and alone. And and and so you learn things along the way and you make connections along the way with doctors, organizations, and and and whatnot. And so, you know, I was not like I said, it wasn't my intention to to start a nonprofit, uh, but when when you when there was A need, not just a personal need for me and my family and my son, uh, but for my colleagues, and you know, who uh like I said, what not one of our co-founders, his son, Ian, was on one of those Ivy pumps that you can't be taken off, or you like the the half-life is minutes or or fewer, you know. So, so and ultimately he ended up getting a double lung transplant. That was seven, eight years ago. He's doing great. And so, so there's a sense of urgency, and then and um, and sometimes you just kind of you you uh you it's trial by fire, you know, yeah and so and so I I can tell you, at least for me, how I approach it now, you know, I don't I don't I I've always approached it like I approach my work in in the entertainment field and promotion or marketing. And I I try to make simple messaging and something that people can understand quickly and make it uh uh easily digestible. And so um, and so when you can take big concepts and distill them down uh excuse me, and so j just to uh to make it just so it's universal, I guess. Because again, it doesn't have boundaries, and I and I have I've had the blessing of of I don't know if I said this already, but I've had the blessing of meeting people from all across the planet. And like when I hear one of the very first people I ever interviewed uh w was a woman from Serbia who had nothing. There was no trip, there was no therapies, yeah. You know, and and or this country might have two, or this one might have uh three, uh, you know, and so uh it's it's astounding to me just the the the experience, the different experience patients, yeah, people can be impacted with where you are born or where you're at at the moment, right? Yeah, and and and one gentleman, for example, not too long ago, uh I interviewed, he was uh where was he from? He was from um oh god, it wasn't Ukraine. Hold on one second. I guess got it. Yeah. Oh he was I geez, I feel so Eastern Europe? Yeah, he was somewhere in Romania. He was from Romania. Oh, he's Romania. And so like his wife, uh his wife was very dire situation, and uh uh he ended up writing over a hundred doctors that he would just research on the web. A hundred doctors across the planet. Only three of them answered. One was in Canada and said, Hey, I can see you in two months, one was somewhere else, I don't remember, but they he wasn't taking patients. And then he found this patient in Austria, and so they were commuting back and forth to Austria and ultimately had to lose their family and move there. His wife got a transplant, she's doing great uh a few years later here. And so just the hoops that people have to go through that I I think that is what really touches me is that is is that you truly there's that saying you don't know what other people what other people journey they're walking, right? And so when you hear that and when you can have those stories, um it's it's it's great. And and and I will tell you this, it it still surprises me. Now my son ultimately passed away five years five and a half years ago when he was 19. I still meet people that reach out to us to to do an interview or podcast or whatnot. And we're sitting here in a pre-interview, uh, you know, as I get ready to hit record, and the and uh and uh woman the other day just said, like, oh I just gotta tell you one thing. Your son, I met him and he was so cool, and he did this, and he such inspired me to do this. And I'm like, like, to this day, like people that I that I I don't I don't even know this person, like that at a conference he may she may have seen him or whatever, and what he did that impacted her is it just touches me immensely.

SPEAKER_01 25:54

Yeah, Lucas had a massive impact and continues to have a massive impact on on the patient community. And I think you know, one of the things that I I love about you, Steve, is that you jumped all in, but you utilize your skills. And we all have different skills, right? We all have different skill sets. We all have what we thought we were gonna do, that now we end up using those skills to help those that we love or to help those that are impacted by something that we're cut we're we're close to. And that's what you've done is taking your background as a marketer and someone who can simplify messages that are let's say let's face it, as you said, you've been in this for 20, 25 years. It's still complex, it's still, you know, going to those medical meetings, I'm sure, are still heavy, right? Yeah, you're still you're still impassioned and empowered to do this work.

SPEAKER_00 26:48

Well, uh uh thank you. And yes, it's because uh again, I believe we had it as good as it was gonna get in this disease. As I said, oral medicines only, he took for many years, did well, and and um, you know, other other people don't have that time. Other people don't have that that that um that diagnosis, rather. You know, that that you know, some people could be like, you come in, it's too late, or whatever.

SPEAKER_01 27:17

There's just so many two two to five years for diagnosis?

SPEAKER_00 27:20

I know I'd say two two to three years is kind of the the you know, two to three doctors at least, a lot of passing around, uh, you know. Yeah. I don't know if I'm jumping around here too much, but uh please one another project that we're so enthusiastic about is um is this mobile app that we created called Heartworks. And that really it really kind of stems from everything we've been talking about. Not only is it like the home of where we keep our podcast, but ultimately we wanted to build a resource and resources that not just patients or caregivers, but doctors and professionals and nurses can use. And so we built a um I I say we, one of my partners here, uh John Hess, who's a co-founder, he his his uh specialty is in uh technology. And so we uh over, you know, built an app from the ground up that did remote six-minute walk testing and that did uh patient surveys and various things, and uh and had various tools in there that that uh through different uh different focus groups and uh meetings we've had with patients and and knowing you know and our experience, put assembling resources that we think this PH global community could leverage and use to better their daily existence. And so um it's been you know, we started with you know a few hundred downloads, and now that's building, you know, getting getting hundreds here, hundreds there. Uh every time we go to a meeting uh and and and meet other patients. Uh uh we launched this about a year ago, uh a little over a year ago, um, uh uh before I went to a meeting at with PHA Europe, which is basically an umbrella corporation uh um group of about 45 different countries uh across Europe uh of all PHA advocacy groups. And we did we learned a lot there because that now you're talking in different languages and all these different needs and wants that that community has. Yeah. And so and so over the uh over the last many months, we've you know, we've put this out in 41 plus countries in 25 plus native languages. Wow. Uh and and but and it's not just us, we've we've we've really tried to build a global um coalition or collaboration with organizations like PHA Europe and Team Phenomenal Hope, I mentioned earlier, PHA Canada, uh the pulmonary hypertension news, uh uh AFPH, uh PHUK, uh and basically, you know, all these different companies, uh organizations rather have different news feeds. And so we put all so a patient can wake up and get news from across the globe delivered daily. They can take a six-minute wall test, you know. They can and and and the the real beauty, one of the one other aspect that I think is is really a blessing of this app, uh, is is we've created based on all these hundreds of interviews, um we've built uh for all intents and purposes an uh a PHAware chatbot system. So amazing. I I was at a I was at um uh the ATS uh conference a couple months ago. Yeah. And they had they had a thing called an innovation, respiratory innovation summit, and and I'm listening to a lot of thought leaders and different organizations, and and one CEO said to another CEO on this presentation, they're like, you know, we could probably build a chat bot to to act as a patient on our websites to do this. And I'm thinking, we have what I believe to be the largest patient library of real patient world experience, lived experience. And so that's that's what our chatbot is trained on on every presentation we've ever made, every webinar, every paper, every interview, every everything. And so that these are just a couple examples of things you can do with this app, uh that again, it's just called Heartworks, and it's in the app stores uh for uh uh and and and and the reason what the genesis of the whole thing was was to do remote six-minute walk testing. Just for people that are not familiar, in this disease state, generally speaking, you're you're you're how you're doing well, you might go to the doctor's two or three times a year, and you literally walk six minutes up and down a hallway in the clinic, and you're walking 400 meters, you're walking 350, you're walking 450, and they and you're you're you're plus or minus wherever you were last time, and that it really adds to what your treatment is gonna be. And so our theory, our our our our um uh hypothesis was excuse me, that patients do with their have their phones and they do 106-minute walk tests a day every day. And so you could have uh as many data points as you want, or you know, as and so that's that's thinking of like taking these one, two, three dots on a chart and adding hundreds of dots on a chart. That's what that's where we're that's where we're hoping to that this is really gonna help the community.

SPEAKER_01 32:33

Sure. And then you you have that much more data points that can help that patient and help the provider to understand how that patient's trending over time. So that again, if it's if it's leading to how we're gonna treat it, then more data the better, right? Um and that's that's what I love about pH Aware is that you guys have have not just settled for disease education and awareness for what it is, and and just created some some pieces, so to speak, that you get out to the community about here's what pH is, but you're finding innovative ways to create new ways to reach those patients, as you said, that aren't on the 405 or you know are stuck in some back uh backcountry middle of nowhere that they have access to it.

SPEAKER_00 33:19

I I think and this I can tell you from talking to patients in all also industry is I think there's a frustration because people like, oh, I want to go, I gotta go to this website to get X, I gotta go to this website to search Y, I want to find a clinical trial at clinicaltrial.gov, I want to figure out what a six-minute walk test here, I want to go to get the news here. And so bringing this into an ecosphere that's one-stop shop is really uh is really um hopefully, I think something that is beneficial to uh to to the community. And and as I mentioned earlier, what we have like the world pH symposium, like all the guidelines, uh, or uh continued medical education, CME for nurses, for for people like so. We again we we're trying to figure out ways to make something that appeals to everyone who's in this giant puzzle uh the of PH that that we can make um tools that that they will find useful. And because another thing too, and I and I'm guilty of the same thing when you you download apps from different things or names or whatever, it's like you gotta have a reason to go back and to use it, you know, and to use it repeatedly. And so um that's that's another aspect of that. And and I will mention too that you know, uh, like with clinical trials, clinical trials is the reason we're here today. So many patients are here today and living longer, you know. So there's great places, you know, the in the US it's called clinicaltrials.gov, and the E EU has a similar website, but it's very it's ever it's every disease state, it's hard to make it. So so we have like a clinical trial matching tool. So it you you kind of put in the disease state you have, in this case, pulmonary hypertension, you ask three, four, five basic questions, how far do you want to go? And instead of searching through hundreds of trials that might be in, you know, if I'm in LA, it might be in New York or whatever, and maybe, you know, it's like I could do a search radius and I can say, these are the two, three, four that I might be most um most uh uh qualified for, if you will.

SPEAKER_01 35:24

Yeah. And then you, as the patient now can bring that to your doctor, may they have been willing to share with you the trials that are available or not. Um now you're that much more empowered as a patient, and that's right where we want patients to be, is to, as you referenced very early on, you it takes either having yourself empowered or a caregiver or a team member that's empowered to help you, um, that's going to be willing to do that work. But if we can empower the patient and give them all the tools and all the resources in a one-stop shop, they're that much going to be that much more better off in the long run. Um you reference that you do work with industry. What do you look for in a partner when it comes to working alongside an industry?

SPEAKER_00 36:08

Well, you know, a lot of a lot of the uh, well, I'll say first and foremost, most of our funding comes from industry. And I think that's true in this disease state. Um disease states. Um what I personally, you know, I I don't think to date, I'll put it this way, I don't think there's yeah, I want to I want to collaborate. I we don't want to have we don't we don't want to mandate and we don't want to have mandates. You know, I think that's a fair statement. And so I I want people that uh are engaged with PHOR, no matter who they are, patient or industry, to to to be excited, to be uh, you know, uh an active participant, you know, uh to the extent of whatever firewalls uh uh a various company may have. But uh that said, you know, it if um you know there's some of our partners, of our of our sponsors rather, that are that are like, oh, I want to introduce you to this person, this person, this person, or there's other ones that are like, oh, we've we've we uh you know I've taken the I've taught this person, this person, and this company about the app. I went to this group. So so that's great, you know. And I think that uh what what I think is interesting too, you know, this a lot of the big players uh over the years as these as these uh therapies go off label, become generic, they you know, some of the big pillars of industry kind of kind of move away. And so other ones are up and coming. And so there are many in the field right now, many smaller uh uh pharmaceutical organizations that are uh that are looking at not just pulmonary habitation, but uh Ph ILD. And so some of these people are still in their various trials, uh uh, you know, uh and they don't have a product on market. And but but what is great, asking me what you know we want to see is like there's people that like that believe in uh the work that they believe in the disease state or the community rather. And so if if if they are engaged or interested, or we I work with their um uh let's say their marketing team or whatever to to social team to to put out episodes or they have suggestions on on programming and and all that. So that's what we look to do because uh so many there's you guys are the experts.

SPEAKER_01 38:26

Let's be honest.

SPEAKER_00 38:28

There's been a lot though of companies that have you know tried a molecule or tried a uh therapy and then it then it goes bust and the company folds and they move into a different disease state. That said, there's other ones that are that are working really hard for patients. And um, and so I tell people, you know, I tell any potential collaborator, we want to be as you know, as uh as high, you know, as big or as little of you want to be in to in our in our in our team. We're we want to be there for you to help nurture you in this community too. And and and and and because ultimately you want to believe that they as a company are believing in their potential therapy or their trial that it's gonna work. And if it is gonna work, then they're gonna be around for uh years. That much longer. Yeah, and so so that's really about it's about nurturing all those relationships, and uh I'm thankful that that there are people that have believed in us, uh, and there's people that have um, you know, there's a lot of apologies, but like there's a lot of people that had started in one organization, uh that have now come to you know that have moved into this. I've known people for 20 some years. There's people that have met Lucas, that know, you know, that that know uh Ian Hess, the other uh uh my partner told you about. So like so there's it it's great when the community, which is pretty small community, that everybody kind of knows each other and they move around into various places, and so you you you want to have good relationships. With that family, yeah, yeah, you know, so it's always gonna come back, as you said.

SPEAKER_01 40:10

I mean, uh in this industry space that I've been working with from a patient advocacy perspective, people cycle roles every 18 months to three years, and they cycle companies every five to 10. And it's great, you know, you might leave one company and leave a disease state to be coming right back into it. Um, I actually just spoke with an advocate uh for a biotech company yesterday who's been in one disease state for 16 years, which is unheard of. Um, but that's someone who's committed to that, that, to those patients. And that's what you we all look for from from industry is as you referenced, that commitment. You're either going to be in and you're gonna believe in the therapeutic that you're creating for that patient population, or not. But at the end of the day, if you're in it and you think that your therapy is gonna be there, you wanna be with the groups who are with the patients. You don't, you know, it you can't go it alone. It's not possible. As you referenced earlier, clinical trials are standard for your for your patient population. That's not normal for many. And I think there's a lot to be learned from your patient population about how they became comfortable with clinical trials in the first place.

SPEAKER_00 41:19

Well, that I can tell you since day one of our organization, since day one of the podcast, that I think is probably one of the biggest themes. And I've always I basically always touch on that because in some way that that people understand that they they know that they're not guinea pigs, that they can get out if they want to get out. It's not required. If at any point they feel uncomfortable, they can not do it, they don't have to participate, but everything that this uh this disease state has has been built on the backs of the patients that made sacrifices earlier uh than that. Yeah, right. And and I think that's a continual that'll always be a perpetual um um kind of theme or or or discussion that have that happens with patients and doctors, not just in pH, but in other disease states. And and so we really put a focus on that and and and have had, like I said, so many of the best minds uh uh talking about this. And and again, I don't know exactly when this will be released, but we have a whole series of webinars coming up that of like of like people that doctors that were involved in the disease before there was any therapy, the doctors that were involved in the initial trials, the ones that were involved in the the the combination therapies, and the ones that are involved in what's coming next. So like it's really That's amazing, you know. So it's it's really kind of you know, I don't know. I just yeah, you know, and and and whatever's beyond that, who knows, you know. So excuse me. So we're I'm just thinking I'm blessed. And and and the last thing I'll tell you about this is is I just got a a beautiful email yesterday from uh a small um a small pharma in this disease state that one of the first doctors I ever interviewed a decade plus ago, this guy sent me a note saying, Oh, this doctor said that I should meet you and you know familiar with what you're doing, I'd love to connect and learn about how you know what we can do. And so, like just to be referred from another place to to to to to to welcoming the you know what what the road ahead is gonna be is that's what we look forward to, you know?

SPEAKER_01 43:37

That's that's an amazing testament to the work that you've done, the relationships that you've built, the the impact that you've had on other lives. You know, I often ask what empowers you to keep going when you know the community, let's face it, as you said, it shrinks. You lose people all the time in your community. It's a daunting community to be in. But it sounds like those relationships, the impact that you're having on lives is what keeps you going.

SPEAKER_00 44:06

Yeah, I mean, look, I would I can just rattle off names. I could say, you know, Sean, Tiffany, uh, Jenny, uh, uh, uh uh Maddie, uh Katie Grace. I could just I could just name names all day of people from six to sixty that that that that we've lost, that I lost his friends, that Lucas lost his friends. Uh you know, uh so it's again that uh we do what we do so that the next person that gets diagnosed today, and there's probably a a thousand patients uh uh a year getting I I don't know the number exactly. I chat GBT told me something like that at one point that a whole new bunch of people are being diagnosed all the time. And new class side note, side note, um uh we've done extensive work on this as well. Uh meth amphetamine use is one of the largest uh new populations of people that are really and and and that's an issue for this country all over the country in different parts of the country. Yes. So there's not know that. Yeah, so that's that's a problem as well. Yeah, you know, yeah, and so so I I will tell you, and if you if you would be so uh give me the liberty to do this when you say how do you move forward and and work through that, it is you know, since losing my son back uh five and a half years ago, we you know it it it it continues to be therapeutic to me personally, because I'm the I'm the first audience of any of these conversations. So it's it's it's it's literally like one-on-one support that I've been blessed with, whether it's a doctor or another patient, yeah another fellow caregiver, right? And so so that's been great, you know. And but but one thing that has been a driver for me, if I can just circle back to to Lucas for just a moment, is that excuse me, is that you know, he didn't do sports and he didn't do football and baseball and all this thing because patients have exercise issues. Yeah, but I I wasn't a sports person, anyways, a sports dad, right? So what I did, I was more I you know, like I said, I was in entertainment business, I was in yeah, I was a writer, I was an actor, I was in voiceover, and even when he was a little kid, you know, he was playing with his toys and he would go, you know, like each each sold separately, batteries not included, ask your parents, and I was like, what? So like so like he got involved in voy uh in voice acting. So he was a advocate in one of those early PSAs that I mentioned, yeah. He was the voice voice of one of them that uh that caught fire for Fox, and that's the one that really kind of they played it on all over the country and movie. We played it in movie theaters and all this kind of stuff, and so that was great. And then in the other aspect of Lucas as a is a all through his youth, up until when he passed, he was a fantastic artist, and so he was a painter, he was a drawer. This these two things behind me, I don't the perspective is weird, those are probably four and a half feet tall. And they that he was like probably four years old, but we decided, like, hey, we put him on a ladder and said, like, here's a painting, and he just started painting dinosaurs and all this kind of stuff, right? And so one thing I did recently, uh, oh, actually, when he passed away, what what if he was 20, and so a year later, uh he was on his 21st birthday. My wife and I, uh, another fellow, uh, by the way, uh colleague at Fox, who's a fantastic photographer, editor, uh uh graphics guy, we took a stack of his portfolio of everything he ever drew, and it's large. And so we he he high-res scanned everything. And so what we did for his birthday is we rented down a lot uh a gallery, uh an art gallery in Los Angeles, and had like all kinds of stuff, and then like there was hundreds of people, it was it was beautiful, it was lovely, and you know, blew up all these you know giant paintings and stuff, and um, and people were like, Oh, I want to buy that, I want to buy that, I want to, you know, and so like what we did is we let people do that, and what ultimately we ended up doing was giving all those proceeds uh to uh a camp that he went to called Camp del Corazone, which is a uh it was traditionally a heart camp in Los Angeles on Catalina Island, and um, but he was the first pH patient to go there, and subsequently many have gone. And um, so so that was I just wanted to mention amazing. And and one one in particular is is a project, just a personal side project, as it doesn't have anything to do with pH aware, but like uh I created a um we took one of his self-portraits we have, and I've I got a sticker here, I'll show you. And it's called uh this is just a self-portrait he did. Uh it's just a huge painting, but it's a sticker. Awesome. And it says down here it says, Life is not beautiful, the things you do to your life add on to its true beauty. And we put Hearts for Lucas. So I made a heartsforlucas.com website, and I have given hundreds and hundreds of these stickers out, not just to travels that I've taken, but to other people, yeah, including doctors and patients and other and people. And uh, if you get a chance to go there, anybody, heartsforlucas.com, you can see they have popped up virtually on every continent, from Red Square to Thailand to Australia to Ireland to everywhere in between. And so that's fantastic. It's that's what kind of keeps the drive going for me, you know, and like and and uh it's so we're we're really excited about that too.

SPEAKER_01 49:51

That's um absolutely amazing. We'll ensure that we not only leak link to um uh Hearts for Lucas, but also I uh I'm aware that I'm rare, your show, uh, in the show notes when we when we publish this in about two weeks. But I I just thank you for all the work that you are doing for patients. And before I let you go, the one question I have for you as as a as a father uh of a child with pH and having been there yourself, if someone gets that diagnosis, what's your advice to them today?

SPEAKER_00 50:24

Well, the good news is that this is the best time you're gonna have to get pulmonary hypertension diagnosis because the landscape was completely different in 2006 when my son was diagnosed. And he thrived for many, many years, for 14 some years, right? And I think back the reason as well you asked me earlier how I got involved, because the when he was diagnosed, he was four, we my wife and I went to there was like, oh, there's this there's this California conference in San Francisco. Uh oh, we're gonna go there, we're gonna, we're gonna um we'll go meet some other patients and people, parents. We went there, we were one of one of two people that were that had a kid. That's it's again, but remember I told you about they was really focused on women population at that time. Uh and that little girl, tragically, she passed away about one year after Lucas. Um that said, uh so much has changed since then. There's so many more therapies. There's other and there's some uh um therapies that are such are life-changing for patients. Ones that he missed, that he was involved in early trials of certain things. Yeah. But there were there were also therapies that he missed that are that are uh that's really making a difference for people. So this is not um this is not a death sentence today, you know, as uh and and there's been so many patients and in in in uh and and families that have are not having to have that lung transplant conversation or the fill out my will tomorrow conversation, right? So we don't know what we don't know. And I I always believed, I I never believed I would be in this position, frankly. I I I maybe I maybe I just turned that off in my mind, and because ultimately with pH, you're okay when you're doing okay, but when you're not okay, you're doing bad quickly. And so the the best advice would be make sure you're at an expert center, you're at a pla at a hospital, in a doctor that is knows what they're doing with this. And if you think you're at a doctor who's not sure what's happening, or you're like I say, you're not confident, you believe something else is a splinter in your mind, then you should go get a second opinion or a third opinion. And so that's kind of the advice today because I think the world of pH, uh public hypertension is is is not the same as it was in 2006. It's definitely not what it was in 1995 when there were noties.

SPEAKER_01 53:06

Yeah, and get to pH aware, get to your site, get to uh uh Heart the Heartworks app as well, ensure that you're plugged in to the community and you have all of the information so that you can be connected with those physicians and with the with the patients that are dealing with the same fight that you are, and you're able to put up that fight because of people like Steve. So, Steve, I greatly appreciate your time. I appreciate the work that you do for patients every day, and I look forward to seeing PHWare continue to succeed.

SPEAKER_00 53:36

Thank you so much. Um we're so blessed to uh to uh to work with you on this, and and I thank you.

SPEAKER_01 53:42

Of course. God bless.

SPEAKER_00 53:44

You too.