The Unlikely Path from Creative to Life Science Entrepreneur with Casey McPherson, CEO to Cure A Rose Foundation

Episode 41: Casey McPherson

Michael Scharf: Austin is the new innovation powerhouse, not the next Silicon valley, but the first Austin, we are adapting to the future in real time.

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The road to being an entrepreneur has many twists and turns. Starting that journey from a non-traditional starting place. In this case, the music world can have even more unexpected challenges today. We're talking with Casey McPherson and hearing about his journey from accomplished musician to advocate and life science leader.

We learn about the role of creatives in innovation ecosystem and how he sees the bio economy playing out here in Austin. Casey has spent the last 25 years as a singer songwriter, entrepreneur and mental health advocate. His bands have toured the world and had songs hit the top 10 charts. However, in 2019, his world changed forever.

When his daughter Rose was diagnosed with a rare genetic disease with no cure. Two years later after hundreds of meetings with researchers, scientists, and biotech companies, he started To Cure A Rose foundation, developed a therapeutic for rose and children like her. Thanks to the hope offered by recent scientific breakthroughs.

Casey's on a mission to save his daughter and change the way we treat children across the rare disease spectrum. Marrying his two passions. Casey uses music to spread awareness and raise money for rare disease treatments. Between meetings with biotechs researchers, the foundation science team, and fellow rare disease advocates, Casey finds time to co-host the gene fixers show cure Odyssey every Tuesday afternoon.

Casey, welcome to the Austin next podcast.

Casey McPherson: Thanks for having me.

Jason Scharf: So let's start off tell us the story of To Cure A Rose foundation. What, why you founded it? What's the mission and what are you doing?

Casey McPherson: Sure. Well, you know I guess I'd start with, I, you know, I've been a professional musician most of my life.

And, you know, at the height of my career, I, you know, had a couple of top 10 hits of video on VH1 one and sort of worked my way to the middle, so to speak and got married, had children. And when I had kids, I really, you know, was, was trying to figure out, okay. I, I, I wanna be home a little bit more than a few days a year as a touring musician, you know, you're, you're gone a lot.

And, and so I, you know, being in Austin was doing some real estate and some tech stuff and, and touring and releasing records. And I, I have two, two children, Weston who's now eight and Rose who's now six. And when Rose was born she was having all these medical complications developmental delays.

And so we went through the current, you know, diagnostic odyssey that our healthcare system offers, which is not much for something that does not have a current therapeutic, you know? And so we went through these panels, you know, what they'll do is they'll, they'll see if it looks like. You know, they're like, oh, this could be some sort of genetic disease or disease of some kind.

And they'll, they'll do these approved panels, that insurance approves. And if it's not one of those, you just keep doing these panels. So, you know, Rose was struggling with walking, just falling on her face. She lost the few words that she had around one and a half and one and a half, two. And choking on her food, just some really weird things that were going on.

And, and so we, we ordered a whole, a whole genome sequence and, and at that time it was about $10,000. So I negotiated that down to a few grand. I think now we can get it for a few hundred bucks, which is great. Because you gotta pay for that out of pocket. And I walked into the neurologist office to, cause I, you know, had that company send him the results and he's Casey, your daughter has a rare genetic disease called H and R and pH two string of letters and numbers.

And there is no cure. There's nothing we can do. Good luck. And so, you know, for the first time in my life, I reached this dead end in the healthcare system. And you know, I'm a dad and you'll throw yourself in front of a car for your kids, but there's no car to throw yourself in front of for something like this.

And you know, I'm thinking is Rose gonna suffer her whole life? Is she gonna die early? Am I gonna be changing diapers while I'm, you know, 75 years old? Just some of these realities and being an entrepreneur, you, you know, one of the first things you learn is, is that innovation is sort of key. And anything that you do.

And so your, your brain begins to sort of think that way. And just because somebody says something, you don't always take it at at face value. And so I, I got online and I Googled parent cures child of rare disease, and that's where I started . Thank God for Google. And that sent me on this journey for the next two, two and a half years.

That was quite remarkable. And so I, I immediately started stalking and found and contacted Julia Vitarello, who her and Dr. Tim Yu created the first n of one antisense, oligonucleotide for her daughter, Mila. And you know, there, there were hundreds of articles about it and, and the scientific journals.

Economist, and New York times. And, and so she began to mentor me and connect me with people in the biotech space. And I just committed, you know, for those two years to, okay. I, I know nothing about this. Like I fell asleep in biology class in high school, so, you know, I, I , I. Began to sort of develop a network of people that could teach me and could help me understand the space.

And so I talked to hundreds of biotechs, you know, CEOs and, and translational scientists and academics and foundations. And, and so what I learned was pretty interesting, you know, the statistics. Pretty insane on rare disease. Now we know that there's over 10,000 rare diseases. You're looking at at least 200 million kids, worldwide, 30% of those don't even see their fifth birthday. And the reason why we don't have a lot of therapeutics in the pipeline for many of these diseases is as a whole, it's a huge number of bigger cancer aids. And you know, all these other things, but. Because they're particular mutations and in variance within those mutations, it's incredibly small populations.

And so from a, you know, economical sort of profit side, many of these will make zero money or the margins are super thin. And so it's not because we don't have the technologies for many of these diseases. It's simply because we don't. The right business model. So I decided, okay, I'm gonna start a foundation.

And, and like, many of these other parents have done a family foundation where you're raising the half a million to a proof of concept drug, and you're 5 million to a phase, one trial. And. Start getting that team together and, you know, becoming an expert in your disease and assembling your drug development team.

It's basically like a nonprofit biotech company. So I did that. I started that about a a year and a half ago. And. The mission though, is to create therapeutics for children with rare diseases. Cause I immediately saw that this is a problem. Like this is totally unsustainable for parents like me to create foundations, become biotech CEOs and learn how to develop drugs.

You know, you think about the inefficiencies of, of a 10,000 different diseases and a parent that, you know, you're looking at teachers, lawyers carpenter. I know all of these. People, and, and it takes a few years to really begin to understand the process and to actually even read a white paper, you know, when, when you're not familiar with, with a lot of these acronyms and words, you know, and, and so I wanted to start a foundation that became a platform for other rare diseases in other children, because I may or may not be able to save my daughter. We're fairly certain that we can, but in this, in this world, you're working with biology, which there's still so much to understand. And so that's the vision of, to cure rose. And we're starting with Rosie, you know, we're starting with her disease, which we call H two and, and we're working on two different modalities for that disease.

So I'm pretty excited about.

Jason Scharf: Do you think we're in a different time now than say if this had happened 15 or 20 years ago? I mean, you talk about the, the decreasing of sequencing, but something that, you know, our listeners may or not may not know about, but you know, CRISPR would basically in short is gene editing is a lot easier today than it ever has been.

And that's, you know, lots of interesting things are happening. Sickle cell may be towards a cure actually in clinical trials. But when you have this kind of now horizontal technology, That can may affect what you just said. Like it's 200 million kids, but it's 50,000 or whatever. The, you know, number of diseases where you have, you know, a hundred people having this disease, it ends up being more about how do you apply this horizontal technology?

How do you feel about kind of the moment that we're in, in this kind of the, this tech bio revolution that can really help.

Casey McPherson: Yeah. I mean, it's really exciting, you know I met some parents and, and people that were, you know, I'm, I'm friends with you know, [???] Deep circle when he was getting started so many years ago and, and the access we have to.

I mean specifically short and long read sequencing is huge. Right. You know, the access we have now to high throughput screening so that we're able to do hundreds to thousands of shots on goal at one time that that's sort of shortening, you know, what used to cost, you know, $30 million and 30 years, or maybe a hundred million in 30 years.

Now we can shorten in as little as half a million dollars in a year. And that's obviously when everything goes your way. Yep. But, but it's, it's the other thing I've noticed is that there's a lot more academics out there that are really starting to look at translational science as opposed to. Just research.

I want to know more about the disease. You know, we saw that at cancer a lot, at least I did growing up or these foundations around research and, you know, research is incredibly important, but as a parent who has a sense of urgency and. You know, you're you're, I don't really care that much about understanding the disease as, as so long as we want to get to a cure.

So these platforms like CRISPR ASO, small molecule repurposing, gene therapy, and gene editing, and, you know, prime editing and base editing will start coming online. I, I, I hope very soon. So it's. It is, it is one of the, I think one of the most exciting times to be alive in this space.

Jason Scharf: Yeah. And it's interesting.

We talk about cancer because we've seen that same evolution. If you go back 50 years or whatever cancer was, you know, couple of types, right. It was geographic based. It was leukemia and lymphoma. And today now, similar to the rare disease. It's, you know, there's a 50 different types of lymphoma because it really is a genetic disorder.

And I think that's kind of in many ways, paved the way that we see all of these diseases. I mean, you can probably go into diabetes, which we have type one and type two, but I'm sure as we understand the genetic components of it, we'll see the same thing as everything else on top of obviously. Behavioral and environmental components as well.

Casey McPherson: Absolutely. You know, it's, it's a one thing that has sort of fascinated me that I didn't understand before this is, is. Each of our biology is so, so complex and unique to ourselves and, and some of our challenges can be unique to ourselves. So as we look at solving the cancer and rare disease crisis, we're developing technologies, platforms, and processes that are really going to usher in personalized medicine, you know, and, and that is very exciting.

And to be a part of that, just to you. I'm compelled because of Rose. So I have a, I have a, a unique set of drivers, but to be a small cog in that wheel is really exciting.

Michael Scharf: Well, I'm not sure it's a small cog in the wheel, but we're, we're looking at innovation. As an and here in Austin as an ecosystem, and a lot of it revolves around the tech class, but a lot of it also revolves around the creative class where you came from.

And as a, as a musician, I'm curious as to how you see the interactive between the creative class and the technology class and how you see that affecting what you are doing as well as the overall ecosystem here in.

Casey McPherson: Yeah. I mean, I, I had no idea that I would have a unique voice in this industry and growing up and learning how to write songs and make records.

And, and, you know, you, there had to be something unique about your approach to stand out from, from the others. And there's a degree. If you look at music from the seventies on, obviously maybe you might argue seventies were, were the best years. But, but innovation is in the DNA of, of creation, you know, and, and what I found was that.

On a sort of biotechnology side. You have maybe like a pool of scientists and outta those scientists, there's only a few that are really using the creative side of their brain. And I think part of it is the way we're educated around. Whether it's, if you're on the tech side, whether it's coding a piece of software or the, you know, the biotech side, learning about genetics, that there's a, there is, there is a huge need for thinking outside of the box and asking questions that aren't typically asked in order to.

Sort of rethink our processes on how to do that. And I have found a voice in that which has really surprised me. And and so, you know, when I'm on a call with, you know, seven other neuroscientists and drug developers, there is a conversation that I get to have with them that, that has value to them.

And I feel like that's largely because maybe the executive function in my brain is not turned on nearly as much. And so, you know, as a creative, you really stop seeing walls and you start seeing opportunities and you start seeing possibilities and, and we desperately need that in sort of reaching, you know, these next steps in curative treatments.

Michael Scharf: Well, let's pull on that string a little bit. How do we, how do we train scientists and technologists to understand that creative part of the brain and maybe unlock it a little bit more? do I have to have somebody like you as an advisor for every tech company now, or,

Casey McPherson: you know, I, I will be honest and this isn't sort of a slam, maybe it is a little bit but the culture in academia, what I have seen, they need funding and they need to publish.

And there is a level of fear of failure, fear of bad data, and this need to become a prominent sort of name so that they can be getting these funds for their lab. And, and so there's a, there's a high degree of conservatism that is sort of a fear of risk and, and a fear of failure. And, and to some degree in healthcare that's required because you're dealing with people's lives.

But I think that if we could alter the incentives. Right now, innovation is not necessarily the top incentive for scientists in academia, which is where most come and then many move to, you know industry, I think in many ways for that reason. And, and so I think it's about giving permission and about creating

spaces and cultures that allow for that, which is gonna come from in many ways. I think the university rethinking how they're running their tech transfer office, how they're running their labs, you know how they're, how they're running their ecosystem with their scientists.

Michael Scharf: Well, it's interesting because in a lot of ways, the universities see themselves as a basic science kind of organization.

As opposed to an applied or innovative science kind of organization.

Casey McPherson: Absolutely.

Michael Scharf: And you raise an interesting point in terms of how do we help the universities meet the goals of innovation in their model? You're right. Publisher or perish raising money for research. My wife used to work at a university.

This one professor had come up with a. Innovation in mouse, genetics so much so that he was known as the mouse man. And he had no problem raising money, getting a building built for his research, but he had no idea what these, what these mice were used for. They were just used for other researchers to do their thing.

And it's interesting. Is there anything specific to Austin in terms of how we're such a rapidly growing region? That's allowing us to keep a healthy creative class or putting more that healthy creative class at risk.

Casey McPherson: Yeah. I mean, I sort of think both is happening. You know, we see these incredibly high housing prices and, and it's getting more expensive to live in Austin.

And typically your creative class is gonna be a lot less concerned about making money and more concerned about creating. And if they're in tech, then they probably get the best of both worlds especially in our city. And, you know, and so we see this huge ecosystem of tech and, you know, I'm so grateful for places like capital factory and others that are, that are building culture of sort of startup culture.

And I think there's a lot of creative class in that at least some that, that, that I've met, but as an artist growing up, you know, I could live off of be between living off of girlfriends in about a thousand dollars a month. I could survive. As an, as an artist, you know, when I started and now that would be impossible, you know?

And so I think you always hear of the Silicon valley guy sleeping in his car with his, you know, new startup. And, you know, I think we do need to be conscious of supporting that community because you know, it's going to be crucial for innovation.

Jason Scharf: So you made the jump from the creative class to the life science arena with no background.

In Austin, which is not necessarily known for the kind of bio economy, say like a Boston San Diego, the bay area, how would you describe the sector?

Casey McPherson: Well, it's, you know, it's interesting because it feels it doesn't and I, and, and I may be wrong about this, but it doesn't feel like a community quite yet. I think there's some really amazing life science companies here and people here.

I don't know that they're well connected with each other yet. And, and so, you know, I started. There were three or four people, Scott Collins who I'm sure you're familiar with.

Jason Scharf: We've had him on the podcast.

Casey McPherson: , he's, he's fantastic. And he was very helpful with me in the beginning, Rodney Bowling at Xbiotech who has now left his company and works for us, you know, developing drugs and Joshua who runs Maxwell therapeutics.

He's a really been a long time friend of mine. And so those guys were real. Instrumental in, in my beginning days from a local standpoint. And, and so, you know, I think, I think us developing that community is gonna be important cuz there's just a lot of brilliance here that's sort of hidden behind doors.

Jason Scharf: Yeah. No, and it's interesting because you know, I was at a a dinner recently. Kind of asking that same question, how do we, you know, how do we kind of connect the community? And part of it is also is what, and, you know, thinking about a term perspective, the bio community, the life science med tech, because it's this be ever growing definition because you, everything from like therapeutics and synthetic biology.

To med devices to more software infrastructure companies like wheel and how do those all kind of interconnected. And then obviously them interconnecting becomes, creates really interesting opportunities in the like, and I think I, I actually a hundred percent agree, like there's, we're hitting a critical mass.

I think of people here and how that community starts really interacting with each other, I think is gonna be an important thing going forward. How do you see then things like Dell med and these kind of new institutions that are popping up being part of that community, being part of that integration.

Casey McPherson: Yeah. You know, there, there is a synergy, I think, to working local and I was reading some biotech book about how Boston's, you know, biotech com economy community was started. And from my recollection, much of it was offering resources for innovation in that area. And so they were supporting. Sort of life science, innovation and communication, and, and people began to really build upon that obviously, you know, be at the university as well.

But we have a unique opportunity now with, with Dell and what some things Leah's doing and, and what their new vision is for, you know, genetics Institute and, and university of Texas a more. People I'm meeting that have been working on cancer. So they've, they've been doing genetics, but it's primarily been in the cancer region, you know, of, of therapeutics and, and now offering them some, some projects around rare genetic disease.

I'm seeing a lot of really brilliant people sort of come to the table. So I'm, if, if we have an institution that is supportive, And some companies that are, you know, willing to, to build innovation. And I think, you know, I think we have the beginnings and what's different than Boston is that we have an incredible tech field.

And it's pretty clear to me that at least with some of the work that I'm gonna have to do this summer on Rosie's disease, man. If I had some AI going. Around some of the questions that I need answered. If I had enough data sets to really help save some time, I, I fully believe that tech is going to have to be very integrated into the work that life science companies are doing to make these treatments faster, cheaper, you know, more efficient it's it's you can just, this marriage is, is really happening at a you know, alarming pace.

Jason Scharf: Yeah. I'm a, I'm a big proponent of the, the, the phrase tech bio rather than biotech, because we're starting to have, to your point, these horizontal technologies, AI 3d printing biosensors with obviously things like CRISPR and base editing and, you know, multiomic sequencing is really producing a whole new set of things.

And I know I, my opinion, but I wanna, you know, your thought on this. We talk about the Boston community. We talk about, you know, the San Diego and, and Silicon valley when it comes to life science. And I think something that we like to bang the drum here is we don't wanna be the next Silicon valley. We don't wanna be the next Boston.

We wanna be the first Austin. Right. And so when it comes into this particular arena, what do you think is the secret sauce to make us uniquely Austin?

Casey McPherson: Yeah. I mean, I, I think our low hanging fruit is, is our, our creative tech partners. You know, it's there, there, what I've witnessed though, is you look at a tweet from Elon Musk.

Oh, DNA's just numbers and letters. We can fix that with software and, and your bio community. Is very hesitant to like you tech guys y'all don't understand this is not ones and zeros. This is we're going at the speed of biology. And there's so much, we, we didn't create the program. We're trying to learn this program.

That's been created over millions of years, you know? And, and so I think I've seen some reservations between drug developers and you know, technology companies. And I think that, that we have the opportunity to maybe create some spaces for both of those parties to come together and really start talking about if there's a mutual respect that, that we can really get creative with this integration.

And I, I don't think there's another city that has these sort of resources to do something like that.

Michael Scharf: Casey, it's been great. Educational and informative as well as enjoyable, but we always end the podcast with the same questions. So Casey McPherson, what's next Austin.

Casey McPherson: Yeah, well, I, I am hoping that next in our city is more community around this.

You know, I am looking forward to, you know, we have a lab startup called Everlum that we're gonna be working with. Baylor UT and Dell and, and To Cure a Rose foundation and, and, and others. So, you know, and Jason and Michael, the work you guys are doing. So I, I think what's next for Austin is, is community creation around a mission to get these treatments to these kids faster and to build that camaraderie. So I'm, I'm looking forward to that. I'm looking forward to being

a part of that.

Michael Scharf: Casey, thank you very much for your time this morning, and thank you for being on the Austin next

podcast.

Casey McPherson: Thanks for having me.

Jason Scharf: So what's next Austin. We're glad you've joined us on this journey.

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