Scott M. Curran: Did you know that there are likely treatments and cures for thousands of rare diseases hiding in plain sight? We just need to research drugs that already exist to unlock their hidden potential for treating other diseases. Why doesn't this research happen and what will it take to discover those cures? The answers to those questions are revealed by a doctor named David Fajgenbaum, who has an incredible story and an inspiring mission. 

David Fajgenbaum: My doctors told me that there was no way I would live more than days. There's nothing more we can do. I was out of options. I said goodbye to my dad, my sister's to Caitlin. I hugged them. It wasn't like, you know, maybe we'll get lucky and like maybe something's going to work out. Like, this was it. Every breath was like, it was just the most painful experience you could imagine. And I was just fighting for every breath, but I was fighting. But now I said goodbye to everyone and the pain was really bad. So I was starting to slow my breathing and this was when I was going to let go. Wait a minute. Maybe I can do another breath. Maybe like, maybe I can do another one. And so it's okay. You know, I'm not going to let go. I'm not going to slow down my breath. I'm going to keep going. Did one more breath and another breath. And then amazingly, the treatments that I had received started to kick in, sitting here with you 15 years later. And I am discovering drugs for patients like I promised my mom. Yeah, it feels like such a dream. 

Scott M. Curran: Imagine you are a young, healthy adult with your entire life ahead of you. And then one day doctors tell you you're going to die. Not someday, but soon. That's what happened to David, but he survived. And then he decided that surviving alone wasn't enough. Here's why today's conversation matters. There are roughly 4,000 approved drugs for roughly 4,000 human diseases. And that's an incredible scientific achievement, but it still leaves about 14,000 diseases with no approved treatment. In the US, one in 10 people has a rare disease. So the odds are high that someone you know and love is affected by an illness that medicine hasn't caught up to yet. The question is, are we going to accept that reality? Are we going to change it? 

My guest today is a physician, scientist, professor, and my favorite part of his bio, a serial nonprofit founder. While he was still in medical school, David nearly died five times in three years from Castleman's disease. He survived long enough to help identify a treatment that actually saved his own life. Since then, he's become one of the most compelling leaders at the intersection of science, data, tech, and social impact. He's the co-founder and president of every year, a nonprofit using data and AI to identify new uses for existing drugs that work across diseases. His team has already helped unlock dozens of potential treatments and they're just getting started. He's also the author of Chasing My Cure, he's the father of two, and he is someone who somehow manages to pair a brilliant mind with a genuinely huge heart. 

In this conversation, you're going to hear how David's family gave him the will to keep living when he was told death was inevitable. You'll hear how his instinct to do good started long before he ever got sick, shaped by his mom, and a deep sense of responsibility to others. And if you're interested in leadership systems or building impact at scale, we get very specific about how Every Cure went from an idea was $0 in the bank to a nine figure nonprofit in under three years. This is a lot more than a conversation about survival. It's about what happens when someone decides to turn survival into a lifetime of service. 

I wanted to launch the Better Good podcast with David for a lot of reasons. The work he's doing on the front lines of medicine is extraordinary. I've also had the privilege of working alongside him since the earliest days of Every Cure. So with that, I'm honored to introduce the very first guest on the Better Good podcast. Here's my conversation with Dr. David Fajgenbaum. 

Scott M. Curran: David, thank you for joining me on Better Good. 

David Fajgenbaum: Thanks so much for having me. 

Scott M. Curran: This one feels like it's coming full circle that we are three years effectively after we first met. 

David Fajgenbaum: That's right. We're back at all started. 

Scott M. Curran: We're back where it all started. We're recording this at the Clinton Global Initiative and the nonprofit you currently lead got its start three years ago. And we're going to talk a bit about that. But there's a part of your story I don't think I know the answer to. I might, but I don't think I do. And I'm curious, and I'm not sure if you shared it with anyone. So I'm curious to know when it comes to doing good in life. What was your first memory in life that doing good was something that people did or that it came to your consciousness that wow, doing good is a thing. And or when did you realize that you might be able to do good? 

David Fajgenbaum: I love that question mainly because it gets me back to think about my mom. As I shared with you, I had the most amazing mom in the world. And she passed away when I was 19 years old from my earliest memory, Scott. I'm talking maybe four, five, six years old. I remember getting in the car with my mom going by to pick up food so we could take it to meals on wheels to get food to people who couldn't afford food. I remember the day after Thanksgiving spending the day at soup kitchens, Mary Judd soup kitchen, and downtown Raleigh North Carolina serving food. It's like a little guy just me and my mom. And I just sort of assumed that was like what you do. Like it's like that's what my mom always had me doing. And I think what I learned from such a young age is that when you are fortunate enough to have health or to have resources or to have life, you got to give back. And you have to give to others. And my mom did it in such a way that it wasn't just a responsibility. It was actually a lot of fun. Like she was like, this is like, this is amazing. She embraced it. She loved it. So, I mean, from my earliest memories are soup kitchens, delivering food, volunteering at special Olympics. That was just like what we did because of your family culture. That's just what my mom and I did. 

Scott M. Curran: I love that. Thank you for sharing that. 

David Fajgenbaum: Thank you for asking me that. So I can remember those great memories. 

Scott M. Curran: That's awesome. I want to talk about your mom more because what I would love for you to do is tell us what happened between then and now. And that's a heck of a story for you. Nobody's got one better that I can think of. Sure, obviously what led you to Every Cure and what Every Cure does today. And then I want to backtrack a little bit because Every Cure is not your first non-profit. It's not even your second non-profit. It's your third that you founded. And all three are still going. Still going strong. And then have evolved over time. But give us the track between those early memories and the time with your mom through to where we are today and what Every Cure is doing right now. 

David Fajgenbaum: Sure. So as I shared, my mom was amazing. And she was, and her and I were so close. And so I wanted Georgetown to play football. You know that they have a football team. Viewers may not know Georgetown has a football team. We do have a football team. And I went there to play, but a couple weeks after I got to campus, my mom was diagnosed with brain cancer. And that just changed everything in my life, Scott. I was always interested in health and medicine and science. But the moment I saw her battle in cancer, the moment I sort of realized that there are these horrible, deadly conditions without solutions. I just said, this is what I got to spend the rest of my life doing. And I promised her I would do that. I promised her I would start this organization or that I would dedicate my life to finding treatments. I also promised her I started a group for grieving college students. I told her I would name an AMF, which were her initials. 

Scott M. Curran: So you were having these conversations with your mom when she was sick. Did you know that it was going to be a non-curable? 

David Fajgenbaum: This was the last conversation I ever had with her. So it was this was the one where up until that point, we've been really positive and joyful. And it had been sort of all about possibility. But this was the one where it was, this was the last one. And so during that conversation, I promised her those two things. I'm going to dedicate my life to finding treatments for patients. And I'm going to start a group in her memory called AMF. I didn't know what AMF would stand for for grieving college students. So fast forward a little bit. I started that organization AMF on Georgetown's campus. I know what you had about it more, but that then became national students of AMF where we support grieving students all across the country. Fast forward a little bit more. I was a medical student at Penn. And it was really getting closer to that mission, that dream of helping patients in her memory. And then all of a sudden, I became sick with Castleman's. As you know, this is the summary version. Got very sick. Nearly died five times from this condition in three years. And I started an organization called the Castleman's Clavon Network to try to find a solution. Found a solution, saved my life. And that solution was always there. So I decided that or not really decided, I realized that if I really wanted to make an impact in saving lives, the best way to do this is actually to find the drugs that we already have, find new uses for them, enter Every Cure. 

Scott M. Curran: Enter Every Cure. To unlock the hidden potential of every drug to treat every disease possible to save and improve every life possible. I know the answer to this, but explain why that matters to every single person on planet Earth without regard to any demographics, geographic or anything else. And why this is such a profound issue for one in ten people we’re encountering every day. 

David Fajgenbaum: Yeah, so when we first got started, we thought that the greatest opportunity to save and improve lives with the drugs we had was for very rare diseases. We figured those were the diseases where they had fallen through the cracks and there might be a drug that could save a patient with a rare disease. As we've gotten on this journey, what we found is actually there are also drugs for very common diseases that could save and improve their lives. But because the system is broken and because inexpensive drugs that are generic, there's no one advocating for new uses for them. There is not a single human on planet Earth that doesn't either have a disease or have a loved one with a disease. They could potentially benefit from a drug that we already have but our system's broken so we have to have this organization Every Cure to find them. 

Scott M. Curran: When you say the system's broken, let's unpack that a little bit, right? The reason that your drug wasn't on anybody's radar screen until you researched your own blood in the lab and then said, wait, there's these common markers and overlapping treatment options. Maybe if this works for parts of what I have in my condition, it might work for me and you've now been successfully treated on that drug for 11 years? 

David Fajgenbaum: 11 and a half, 11 and a half, Scott. 

Scott M. Curran: Yeah, you count every day. You count the phone through the record. 

David Fajgenbaum: And getting close to three quarters of a year. 

Scott M. Curran: You have good reason to keep counting those days and know exactly what they are. But there's no incentive to, so the reason the system's broken is that there's not a financial incentive for drug companies to research the efficacy or treatment potential of generics. 

David Fajgenbaum: That's exactly right. A drug when it gets approved for its first use, that company has somewhere between eight and 12 years, typically on average, before the drug becomes generic. And once it's generic, multiple manufacturers come in, the price of drug plummets, and it becomes basically non-profitable after eight to 12 years. So a drug company has to think really critically what's going to be the most profitable disease to go after? And I can only go after a few. So I'm going to go after those few, all the other ones I can't pursue. And so they typically stop pursuing any new ones after even just a few years, because then you're getting close to the patent expiring. So these amazing drugs get help patients today, tomorrow, the next day, but there's no incentives to find new uses because those drugs that are on patent are soon going to be off-padden. And 80% of drugs that are approved are already off-patent, so there's no one incentivized to find new uses for them. 

Scott M. Curran: So when we talk about where a system can be improved or if it's broken, it's because there's, it's not that the drugs don't work, it's that we just haven't even explored it because the profit motive isn't there. So when people talk about the profit motive in medicine, which is just a reality, we can't change that part of it right now. That's a different problem to tackle at another time. It does mean that there are other solutions hiding in plain sight. And there's a couple things I want to go back to, the time you were diagnosed, but not yet successfully treated with serolimus. Five times in three years. I mean, tell that part of your story that you've told so many times and so well about saying goodbye, one breath at a time, how you saw the journey then, versus how you see the journey now, and knowing what you knew then, versus what lay ahead of you in those moments. 

David Fajgenbaum: You asking that question, it takes me back into being in a hospital bed 15 years ago, 25 years old, 15 years ago, laying in a hospital bed, and just dreaming about a life that I wanted to have, but knowing I never would have it. Sitting there thinking about a family with Caitlin, thinking about discovering drugs and doing research that could help patients, but knowing because my doctors told me that there was no way I would live more than days.

Scott M. Curran: There's nothing more we can do. They've tried everything. 

David Fajgenbaum: They told me that exactly. We've tried everything, there's nothing more we can do. And I was out of options, I said goodbye to my dad, my sisters to Caitlin, I hugged them, I snot-hugged Grant, my co-founder of Every Cure and best friend goodbye. I mean, it wasn't like, maybe we'll get lucky and maybe something's going to work out. This was it. And I grieved, Scott, just fully grieved the fact that I would never do these things that I wanted to do. And so sitting here with you 15 years later, and I've got a family with Caitlin, and I am discovering drugs for patients like I promised my mom, it feels like such a dream. We ran out of options, we knew that there wasn't anything to be helpful, but my doctor has just sort of been like a last-ditch effort, gave me a bunch of chemotherapy, seven different drugs. And the idea was like, let's throw the kitchen sink at him, we don't know if it's going to work, but let's try it. And amazingly, it worked temporarily, but that sort of experience of saying goodbye, realizing this was it, but then, if not being it, really opened my eyes up to a few things. So one is that when you're facing a difficult challenge, you got to have that focus for, you got to keep in mind what you're dreaming of, what you're hoping for. That vision will sustain you.

Scott M. Curran: Vision drives mission. 

David Fajgenbaum: So you got to keep that vision top of mind. When you're suffering, you're struggling, whatever it is, you got to think about what your fighting for, vision drives mission. The second is that you have to have an amazing team around you. So for me, that was Grant, my dad, my sisters, Caitlin, they were literally surrounding me, giving me strength. And I think that no matter what your challenge is, you got to have a great team around you. Think about Z, think about the people we got every year, you got to have a great team. And the third is that you really have to take things one step, or as you mentioned earlier, it's sort of really one breath at a time. 

Scott M. Curran: Share more about that. 

David Fajgenbaum: So my sister, Gina, both my sisters are amazing and they never left my side. But there was one part when, and there was one point, when Gina was sitting on my left side in the hospital. I was at my sickest, and I remember my dad was standing here, and Lisa was over on this side. The doctors had just said, this is it, and I'd said goodbye to everyone. My friends actually had come in the room one friend at a time, spent about 15 minutes hugging them. Like this was, I'd gone through all that, and my breathing was starting to slow. I had horrible pain with every breath I took, because I gained about a hundred pounds of fluid, because my organs weren't working. And so as a result of that, every breath was like, it was just the most painful experience you could imagine. And I was just fighting for every breath, but I was fighting. But now it's said goodbye to everyone, and the pain was really bad. So I was starting to slow my breathing, and this was when I was gonna let go. Remember slow my breathing, starting to let go, like some of the pain sort of subsiding, and then I remember hearing Gina say, just breathe, they've just breathed. And I was like, wait a minute, maybe I can do another breath. Maybe like, maybe I can do another one. And so it's okay, I'm not gonna let go. I'm not gonna slow down my breathing. I'm gonna keep going. Did one more breath and another breath. And then amazingly, the treatments that I had received started to kick in. And so it was like, if I hadn't fought for those extra breaths, we would have never had the chance to see if the chemo could have worked. 

Scott M. Curran: But they didn't kick in that day. That process went on for a month. 

David Fajgenbaum: For, well, in total for months. 

Scott M. Curran: That's what you told us. You were telling me this when we were just chatting one day. And I was like, I didn't know that part of the story that this was, you were using this mantra of one breath at a time. And you didn't know at the time. And we've talked about it. You said you weren't sure you would have made that choice. And you know, it was gonna be months of fighting. 

David Fajgenbaum: I wouldn't have, absolutely. I was thinking to myself, like, I'm gonna keep fighting for my sister and for my family. You know, maybe I'll get another day or two. But like, I can do another day or two, another hour. Oh, I would have had no idea that it would be weeks or months or 15 years. I mean, there's just, there's no way I could have. And I went into your point. I didn't have the strength or the fortitude to be able to like, oh, I can fight this for 15 months. No, no, no. I could fight it for like one hour, one day at a time. 

Scott M. Curran: There are so many amazing things about your story that I know everybody who learns it takes a lot from. But I think that there's something incredibly powerful in that part that we don't know what we're capable of enduring and making our way through, which feels cliche, but in your case, it was literally just one breath at a time. If we took away everything else in the story, the fact that you survived one breath at a time and that one person encouraged you, because I'm glad you didn't give up and just let the comfort medications take over, but that your sister said that to you. And how would the world be different today if she hadn't done that? And I think it just goes to show that we should never underestimate the importance of being there for someone, encouraging them through that next step, that next breath. It's to me, one of the, I've known you for a long time. I've been with you in the journey for three years, but that's kind of one of my favorite things about your story. And there's a lot of things to love about your story is the value and importance of one person cheering you on through the next step. There's a lot of people that can benefit from just that part of the story. And thank you for sharing that. 

David Fajgenbaum: Thanks so much. And yeah, I've got the best sisters and friends in the world. And Gina, of course, had no idea. I mean, I think she obviously wanted me to keep fighting. She was the one person in the room who was not to say that anyone else was okay with me passing, but like she wasn't ready to accept it. And I'm so glad she didn't. 

Scott M. Curran: You also have talked in the past. It's one of the details you've shared that really sticks out to me is that your hospital gown was soaking wet. And it wasn't other people's tears, it was yours. 

David Fajgenbaum: Yeah, and it wasn't just because I was dying. It was literally, I was grieving the things that I wasn't gonna experience. I was grieving that I wouldn't have a family. I was grieving that I wouldn't be able to take care of patients. I wouldn't be able to discover drugs. And it was like, it was full grief because I was told this wasn't gonna happen. 

Scott M. Curran: You'd made this promise to your mom and you've kept it. You have kept it and you still keep it. You're still keeping it every day, which is inspiring and awesome. Amazing for all of us who have the privilege of working with you. But you were still in school and you started a nonprofit in memory of your mom to help other students deal with the loss of a family member and deal with that grief, right? 

David Fajgenbaum: That's exactly right. We called it AMF, as I mentioned. Those are my mom's initials, they ain't re-fagin' bomb. Initially, it's said for ailing mothers and fathers, the students of ailing mothers and fathers. And then we turned it into actively moving forward as the acronym. And yeah, I started out as just a group at Georgetown. I promised I would do it. Started, you know, I basically started telling people, I'm gonna start this group. And when I started telling people, Scott, people down the hall from me would say, oh my gosh, David, I lost my mom six months ago from cancer, but I didn't know you were going through it. So we just never talked about it. So what I learned is that there's this tough experience during college where many of us are losing loved ones for the first time, you know, we're eating this at the end of the day. You're at the age where you start losing grandparents and parents and loved ones. And so you're losing someone for the first time, but you're also away at college where you're supposed to be having the best four years of your life, everyone's out having fun. You don't think you can share that you're dealing with grief. And so many of us, the statistics are staggering. It's like between one third and one half of patients have grieved the loss of love in the last two years. A large portion of kids are grieving, but no one's talking about it because they don't feel like they can. So all of a sudden, just saying, hey, I lost my mom and I'm going to go sit in her room and talk about it. People just poured in like, oh my gosh, I want to talk about this. And so that for me was this sort of eye opening moment where like you can have a challenge that many people are facing, but unless you start organizing around it, we're not going to make a difference. And so sort of organizing these support groups and then we quickly started creating service events. So we decided we didn't just want to sit and talk about what we were going through. We wanted to do something about it. And so we would go raise money for ALS because Julie had lost her dad to ALS. We raised money for brain cancer and awareness because I had lost my mom. And so we were both doing something for the cause. We were also doing something for one another, right? Like I could go to the walk for Julie. She could bring tumor awareness event for me. That's sort of creating community. And then students at other campuses started contacting us and saying, I want to start a chapter in my campus. I was like, well, I don't know how we would do that. Like it's a thing at Georgetown, but by the 15th person that said, I want to start something at UNC or Duke or you name the school. We said, okay, I guess we should probably do this. And so I was 20 years old and obviously never turned it in on profit before. But my best friend growing up, Ben Chesson, we started AMF together. And so Ben wanted to be an attorney and he now is an amazing attorney. And we basically worked together to create this nonprofit AMF. We grew it to where we started reaching students at our largest at over 200 college campuses, support group meetings and service events and started building a board and phrased awareness for college student grief. And I was full time running AMF while I was in medical school at Penn when I got sick with Castleman's. I mean, Grant was my roommate. And he said it was literally all in on AMF and then of course everything changed when I got sick.

Scott M. Curran: Then you get sick. You have this incredible experience that is truly amazing and you've shared that story. You survive, you discover, but you start not with Every Cure. You start with Castleman Disease Collaborative Network.  

David Fajgenbaum: That's right. In May of 2012, so about two and a half years into my illness, my battle, I relapsed on the only drug in development. There was one drug in clinical trials and it didn't work for me. And so that was a really tough moment because my doctor explained to me, again, we tried everything like, and I had tried that experiment. I mean, even that didn't work. And so that's when I promised my family I would dedicate my life now to trying to find a treatment for Castleman's. 

Scott M. Curran: And it's a rare disease. So a rare disease is something for which there is no approved treatment, right? 

David Fajgenbaum: Well, it's both rare and there's no approved treatment. So it affects a very small portion of people and there's nothing that's approved for it. 

Scott M. Curran: So explain to people what Castleman’s is? 

David Fajgenbaum: Castleman's is a disease where your immune system attacks your vital organs. It goes after your liver, your kidneys, your bone marrow, your heart, and your lungs. And we don't know why. It's called idiopathic multi-center castles. Idiopathic means we don't know the cause. So it attacks your vital organs in a relentless fashion. We don't know why. Some treatments have been shown to work. This one drug that didn't work for me, but it was in experimental trials. And then I got a lot of chemotherapy, which can work, but then I would relapse on it. 

Scott M. Curran: And so most people who are getting Castleman's did not have a good prognosis long? 

David Fajgenbaum: No, a really bad prognosis. Yeah, so my subtype, most patients probably closer to 75 to 90% of patients would die within one year of diagnosis. This is really bad. I was called the Tafro subtype of IMCD, the worst one. So it's really bad. And I was now two and a half years into my journey. And I said I would dedicate my life to it. So the first step was, okay, let's build an organization, a nonprofit, the Castleman's Z-Scriber Network, that in my mind was very... So first off, deciding you're gonna cure disease, I knew it was unlikely that I would be able to. I knew that I was... It was very unlikely I'm a medical student, but I knew that no one was gonna find a solution if we didn't. I knew I was like, okay, 100% chance we're gonna die. If they don't find something, let's try. Oh, and by the way, you know, I've just spent the last, I guess this is 2012. So I've just spent the last eight years building and growing a nonprofit for grieving college students, but what if I could take those lessons of building an org, you know, raising awareness, advancing research, which is what we were doing for grieving college students. What if I could apply that to Castleman's? And as you know, Scott, you talk about muscle memory, right? It's like, I had worked those muscles before. It's different, you know, curing a disease versus raising awareness and supporting grieving college students, but a lot of the muscles are the same. And so I was like, I've done something like this before. I think I can do it again. Let's start the CECN. 

Scott M. Curran: And you did. 

David Fajgenbaum: And we did. 

Scott M. Curran: It's alive and well. 

David Fajgenbaum: Alive and well, we made tremendous progress. So, you know, we started in May of 2012. Here we are 13 and a half years later. There was no diagnostic criteria. We developed that. There were no treatment guidelines. We have treatment guidelines. And most importantly, those treatment guidelines aren't just chemotherapy anymore. We actually have multiple drugs that we've identified. We've advanced forward. We've done clinical trials of that that are saving patients all over the world. And what's amazing, despite all of our progress, we still don't know what causes it. It's still called idiopathic multicentric Castleman's. And you know, I say that because I assume when we started in 2012, okay, we got to figure out what causes it. And then we'll figure out drugs to treat it. But actually, it's the reverse. We actually figured out drugs to treat it, even though we saw them figure out what causes it. So, the work continues. And also, I should mention, we still don't have treatments for everyone. There's still patients where the best drugs that we've worked so hard on still don't work. And so, we still push forward. 

Scott M. Curran: How many others or what percentage does Cerelinus also work for? 

David Fajgenbaum: It works for about 20% of patients. So, the first drug that's approved, Celtax now works for about a third. Cerelinus works for about 20%. So, we're at about 50% of patients. We have a new drug, Roxolidinib. We hope it's gonna cut that, you know, 50% down to maybe a smaller number. But we're still sort of chipping away. But it actually, the first four patients we ever treated with Cerelinus, it worked on all four of us. So, I thought, we did it. 

Scott M. Curran: Were you number one? 

David Fajgenbaum: I was number one and then three more after. And I was like, we didn't, you know, we can hang up our cleats, we can retire. But unfortunately, it's turned out that it's about 20% of patients. 

Scott M. Curran: There's a parallel track developing in your story, which I adore because I'm a nerdy behind the scenes guy who loves seeing nonprofits, not just survive, but thrive. And so, I love what you said. Like, success leaves clues. And so, you have this one experience. And I just think the AMF nonprofit first, for every college student, there's so many who have big visions about doing good, doing more good, doing more good better. And they want to do it. And that's such a success story about turning a really difficult thing. I'm not sure what's much harder than losing your mom. But to turn that into action and to do something with it and to know that it touched so many other people in its own is an incredible success story. Then, a rare disease gets hoisted upon you and you endure that treatment and find your way to a cure. And now, Every Cure, which is truly global, has global impact, has global reach, global potential. Explain how, right now at this time, so in the past three years, Every Cure got its start on the stage when you announced it. But it coincided with the arrival of AI. Tech evolving in new in different ways, including but not limited to AI. But explain what you explained to me early on about how that pulls data in and how the still-the-hand to-hand work, because most of the Every Cure does to try to pull in studies that are at different places and trials that are in different places. Most of us think there is some central location of awesomeness and amazingness where all the people are capturing all data and all medical studies. And that's not true. 

David Fajgenbaum: Well, it wasn't true. It's true now, because of Every Cure. 

Scott M. Curran: Because of you, right? You literally saw the need, filled the need. So explain how Every Cure is not just seeking to unlock the hidden potential of every medication to treat every disease possible. And also the 12,000. Give people a sense of the scale of this, which is the number of known human diseases, approved treatments, the delta between, and then why it's so hard to find that until Every Cure does what it does to centralize the database and give it a central depository. 

David Fajgenbaum: Absolutely. There's 4,000 approved drugs, and those 4,000 drugs are approved for about 4,000 diseases. But there's still 14,000 more diseases that don't have a single approved therapy. And we know that many of those 4,000 drugs actually treat many more of our diseases that don't have treatments. But as we discussed earlier, the incentives aren't there to find new uses for these old medicines. Even though they're at your CVS, you know, they're safe, you profile, they've been around for years, the incentives aren't there. So as you mentioned, and as we discussed, there had never been a central place where all this information lived, grant over the last 10 years or so had been really at the leading edge of utilizing artificial intelligence, specifically for drug companies to find new uses or new subpopulations that might benefit from their drugs. And granted, I'd spoken over and over again, what if we utilize this technology that drug companies are using to find better uses for their medicines, but what if we use it across all drugs and all the diseases to find the best uses of medicines for people, not just for one company, for one drug, for one subgroup, but for everyone. And so it was a big bold vision and dream that we had. And to your point, artificial intelligence was moving along, machine learning was getting better, as I mentioned, and as colleagues were utilizing it, but it really was over the last few years that this has exploded. And so what we have built and what we utilize are what are called biomedical knowledge graphs, which basically map out everything we know about everything in medicine and science, every drug, every disease, every gene, every protein, all in one place in a giant knowledge graph. And that serves as the perfect set of ingredients for us to train machine learning algorithms.We know Syltuxemab treats Castleman disease. We know GOP1's help with weight loss. We train algorithms on what we know works, then we ask these machine learning algorithms, look across everything else and give us a score for how likely you think that Syltuxemab might treat Crohn's disease or you name it, but give us a score from zero to one. And now all of a sudden we can literally quantify and identify the best opportunities to save lives. 

Scott M. Curran: I didn't know this until I met you, and I've worked with other health organizations. I've been with loved ones at places like the Mayo Clinic where you hear doctors are sort of calling somebody who's done a trial. I didn't know that these things weren't all in a central place. That scared me, that made me sad. It made other things make more sense. So I was thrilled to just hear and to know that your work was trying to fix that problem at the beginning, much less using machine learning, data tech, AI, to try to start making discoveries faster. Let's make it even more human though. And I'm actually going to share one of your stories from my point of view. I could tell you where I was walking near my house when I was walking a dog. I got a call from you. We were talking about something I didn't do with the organization, which I want to talk about running the organization and having a good board and amazing teams and how we've grown. Yeah, we're, you know, worked to grow Every Cure into a not only fast scaling, but sustaining nonprofit, in which I think so many people can learn from just the nonprofit space alone without regard to a subject matter focus. But one day I was talking to you on the phone, I know which neighbor's house I was in front of, and I just couldn't believe the story you were telling me. It was like on a Monday or Tuesday, and you said, well, yeah, last Friday, and I may be getting some of these things wrong, but I think it's pretty close. And you now actually talk about this, and we'll talk about your TED Talks, because I think he was in the audience of this. You said there was a young man, I got a phone call, like you do, because your story's super compelling and the better known it gets, the more incoming you get, which is also something else we have to manage. Because you give people hope, and you should, it's a hopeful story and it's hopeful work. But I was talking to you and you said, yeah, there was this guy, he was getting ready to be discharged. I think it was a Thursday you got the call, or Wednesday you got the call, and he was getting ready to be discharged to hospice on Friday, because he had been told, we've tried everything, there's nothing more we can do. And through a series of almost like super lucky phone calls, the doctor who was not working that day, got your message that you would call, which I know can sometimes be a sensitivity when a doctor calls another doctor and says, hey, I know this patient's in a really intense situation, but I'm calling you with an idea, but that he was receptive to that, he called you back, he's like, I'm not really working, I heard that you have an idea and you said, hey, here's who I am, here's what we're doing. We have some reason to believe that this drug might be helpful, and if I'm recalling how you shared it with me, a non medical person, you said there were no, is it contraindications, there was nothing bad that would happen if you tried it? Hey, we think there might be a possibility, maybe remote, but if you could try it, there's some data that our works suggest might show some promise here, and if you try it, it's not gonna hurt anything, so he wouldn't like survive and be a vegetable, or suffer some other extreme or pain or anything else, but it might help. But what happened from there? so he's got a family like yours. 

David Fajgenbaum: He has an amazing girlfriend, Tara. Yes, he's got siblings, amazing girlfriend, Tara, and yes, so this is Joseph, and you got it exactly right. The only other thing I would add is that the discussion was really that he was gonna transfer to hospice care, and my encouragement to try these medicines were, well, these medicines could kill him because they actually are intense treatments. They're actually, one of them is a really intense chemotherapy, and I said, I know that, but you're talking about taking him off life support on Monday, so if you know he's gonna die on Monday, can't we try something for him? We tried stuff for me that was maybe a little crazy, and it worked, and I'm like, here, years later, and so I've actually never advocated so hard for a treatment, and I think it was just, I actually, I met Joseph at a conference about six months before that, and then his girlfriend, how he knew to call you. So that's how, again, as you said, sort of like weird circumstances, anyway, I met him a few months before, so that met with Tara, got in touch, and said he's gonna be a transgender officer, I was like, oh my gosh, I hadn't heard about anything over these last few months, and now he's going to hospice care, and so, yes, it was a lot of circumstances that came together, and I was recommending three drugs that are commonly used for a very similar condition. So it wasn't really rocket science to think that like, a drug for myeloma might work for poem syndrome, or similar, so thankfully, this amazing... Massage of Joseph had us pumped up. That's a Joseph had, yes, so amazingly, this doctor decided to try the three drugs, and amazingly, we just sort of sat and waited, and to your point, it was probably like the day that I'd just gotten this, actually a slack message from one of my team members who said, I just heard from Tara, and it's working, he's gonna get moved from the ICU just to the main floor of the hospital, and it was like, oh my gosh, this is so exciting. And this was the call, I gotta be honest. 

Scott M. Curran: This is the awesomeness of doing this work with you, which we'll get to in a second, but it bears the extra breath and beat about hope, that to me, hope is a bad strategy, but sometimes it's all we have, and sometimes it's all we're hanging on too, even if it's with our last breath or our last moments, but these are the stories. I remember being with a family member at Mayo Clinic, and I remember the value of hope, it wasn't the case for my family member, which is always hard, but we got to an elevator on the first floor, and the person that elevator with us looked at our family, there were a couple of family members in the elevator, we just come back from the cafeteria, and we're going back up to the room, and they looked at us just beaming, and they're like, did you get your miracle today? 

David Fajgenbaum: Wow. Wow. 

Scott M. Curran: And they said, what? And they said, did you get your miracle today? Wow. No, no, not yet. I don't think so. What happened? They said, well, they tried something and it's working. 

David Fajgenbaum: Oh my gosh. It's the best. 

Scott M. Curran: And two things can exist at the same time, where we're not all going to get those miracles, and we don't want to give false hope, but there's such a deep value of hope in everybody's life, even when we're at our worst or last, but I think what you give is so much hope, and what Every Cure does, it gives hope to so many people that there's so much potential right there at our fingertips, and I love that, and so you recently did a TED talk. That is now live, and people should watch it. It's an extended version of that first speech you gave at CGI when you announced Every Cure, but with three years of date and proof. So it's not just the Joseph's of the world. It's not just Castleman's, but explain what else the work of Every Cure has, and your work, has uncovered, discovered, and is sharing, and how that's truly impacting other lives, like Joseph, which may not be saving a life that might be going to end of life care, but it's actually improving lives, which is something else that we've added in the line for Every Cure's mission, which is not just the save lives, but improve every life possible. 

David Fajgenbaum: No, you're so right, Scott. So we now have nine active drug repurposing programs for diseases that range from some of the most common to some of the rarest. And so, you mentioned Lidocaine, really interesting data around the role that Lidecane can play if you inject it around a tumor before surgery. 

Scott M. Curran: So this is somebody who's been diagnosed with breast cancer as going in for surgery. 

David Fajgenbaum: They have localized breast cancer, so it hasn't yet spread. It's just localized to the breast. And if you inject Lidocaine around, it's called peritumor injection, basically bade the tumor eight to 10 minutes before surgery, the thought for why we believe it's effective is that it both kills cancer cells that maybe would have been left over after the surgery, but also prevents them from migrating during the surgery. So it turns out that during a lot of cancer surgeries, that the metastasis actually occurs during the procedure. And so you basically prevent that metastasis from occurring and this is potentially massive potential, right? So the study that was done in India a few years ago found a 29% reduction in mortality at five years. Now, if you were to extrapolate a 29% reduction in mortality and we're actually do this across breast cancer patients around the world, we're talking hundreds of thousands of lives. It could be saved. Importantly, the trial was really well done, really powerful, published in a great journal, but there's basically been no uptake. And what this highlights to us is that you said earlier, hope is not a strategy. You can't say, oh, we're gonna do a good study and we're gonna publish it. Let's hope that doctors read it. Let's hope surgeons start injecting it. No, no, no. We have to find these things and then we have to build strategies. We have to go talk to surgeons. We have to go post on social media. We have to update treatment guidelines. We've got to intentionally drive these opportunities for it. 

Scott M. Curran: Lidocaine costs nothing and it's in every operating room, right? 

David Fajgenbaum: It's already being used in surgery. 

Scott M. Curran: It's already in the operating room. 

David Fajgenbaum: It's already in there and it's already used at the side of the incision. So doctors will numb the site before they open it up and they'll also numb it at closure. So it's like literally already being injected. So we're not saying bring something new in. We're just saying put a little bit more of it around the tumor and the data looks really compelling that it has a massive mortality reduction. But even if it's a modest mortality reduction, this is a substance that's already in the OR. 

Scott M. Curran: But it's not costing more. It's not making anybody more profit. It's just a good treatment sitting there already, being used already. And that's incredibly powerful work on its own. 

David Fajgenbaum: It is. I mean, when we first came across it was sort of like, wait, it can't possibly be this simple, right? It was like, what are we missing here, right? And then I mean, that's the power of building what we've built at Every Cure. When Grant, me and Tracy, when we decided to start this thing, we didn't know what we were gonna find. I mean, we knew we were gonna find things because we knew the system was broken. We knew there were things falling into the cracks, but you don't know what you're gonna find. That's why you need a powerful AI platform. That's why you need a great medical team to review the results. But you come across these things that you never could have dreamed of. 

Scott M. Curran: Tell me about Leucovorin. 

David Fajgenbaum: Sure, so Leucovorin for cerebral folate deficiency. It turns out that a large portion of children in the US and around the world that have speech delays and behavioral challenges, and even epilepsy, it can occur as a result of having too little folate in your brain, in their brain. And the reason for that is either a genetic mutation or antibodies that prevent this vitamin folate from getting into the brain. 

Scott M. Curran: And so you told me that you could flood, so again, the best part of working with you is that I'm not medical, but you explain these things in a way that makes sense to me. You can give folate all day long. Won't get any of it in your brain. But it's like a sponge that's already folate. It just won't absorb it. Or the sponge that is unable to take anything up. 

David Fajgenbaum: Yeah, exactly. Or you can think about it as the, maybe this isn't the purview now, but it's like, you know, you might flood your sink, but you've got a stopper. And there's just, it's nothing's coming through. You're gonna take all the folate you want. You can eat, drink, take it in all you want. It's not gonna get into the brain because there's literally a physical blockade preventing it from getting into the brain. But if you give Leucovorin, which is a slight derivative of folate, it's called folinic acid, there's a separate channel called the RFC that Leucovorin can go into and get into the brain. And it can function like folate in the brain. 

Scott M. Curran: So it unlocks that door, opens the door so the folate. 

David Fajgenbaum: It bypasses. The door exactly is like, this door is broken. Oh, there's a door right next to it. Let's open that door and let's go into it. 

Scott M. Curran: And so it was the end of the year last year where you and a small community of people were trying, we're discovering this and you started sharing it and to your point of it's one thing to discover it and hope. But what happened as a result of some of these kids just before the holidays last year? 

David Fajgenbaum: So Leucovorin for cerebral folate efficiency. Fortunately, there have been great researchers and we should always emphasize that Every Cure is good at finding breadcrumbs and piecing them together. But there's great researchers who put those breadcrumbs there who did the hard work. And so we pieced it together. We were very excited about it, began to raise awareness. And it was actually just recently learned about a young boy who was nonverbal. Started on Leucovorin as a result of our activities to raise awareness. And he was found to have cerebral folate efficiency. He did the blood test to determine that. 

Scott M. Curran: And there's only one test for that. There's only one company that does the test. So overlooked that there's not a lot out there. 

David Fajgenbaum: Exactly, there was basically no market for it. No one knew about it. So there can only be one test. And this young boy was nonverbal and he started saying some numbers and then he said his first four words, which I love. And I don't think I've actually ever shared this in a podcast or anything, but his four words are Hi, Bye, which makes sense, Cake and Mama, which were my two favorite. It's like, I love that he got to say mama for the first time. I can't imagine what his mom felt like to hear that. And then I love that cake was one of the four. It's like, he's got the right priorities in life, right? It's like, cake should be one of your first four words. And it just made us so happy. And this is what it's all about, right? It's like, the medicine was there. The test was there. The patient, this child had a cerebral folate deficiency, but he needed the test to be done. So you get the medicine and begin to start saying words that he needed to say. 

Scott M. Curran: Again, your story could end there. And it would be amazing because it still leaves us on this precipice of hope and opportunity of everything that Every Cure can do. But there's an even better story. In my view, based on my experience working with you and my career in experience working on profits, which is the success of Every Cure of Castleman Disease Collaborative Network of AMF and the things that I get super excited and nerdy about. I just want to say all of these stories, it's what makes the work I want to talk about next. So fun to do when we get to work with someone like you, like Grant, like Tracy, like your board, which I want to talk about because they're amazing with your operations team, with your programs, your partnership team, your scientists, your funders. It is a privilege and a joy to wake up each day, go to my computer and sort of sit down and lock into the Every Cure task list for that day because I am fortunate enough to work with you and have been with you since the beginning, which has been such a joy and a privilege. But I'm not a W2-ed employee of Every Cure. I don't work at Every Cure. I'm very much feel and have been welcomed as part of your team and love that and I'm pretty sure above it. But when you hear and see stories like this, it's amazing. But then there's a whole world of people. There's 1.6 to 1.8 million non-profits in the United States of America alone. Yeah. In the first 10 years, a third of all new non-profits fail. You're in the first 10 years of Every Cure. We're just three years in. We're still a baby by that timeline. Yeah. But I knock on wood. I don't think you're going to fail because y'all have designed, built, and grown the organization the right way. And this is a completely different story that has nothing to do with medications and everything to do with success, leaving clues, going slow to go fast. I want you to tell me about boats for a little bit because I went to one of the all staff meetings recently with you all. You all taught me about making boats go fast and why that matter. So I use it all the time now. It's a great sticky metaphor. I think people will love it. But tell me about making boats go fast and how we have started from the beginning on purpose. I always say nothing great in this world happens by accident. It happens by design. Because you can have the best idea in the world. You can even have a ton of money. And the world is full of stories of non-profits that have had tons of resources, great stories, a lot of enthusiasm, vision-driven missions, et cetera, et cetera, but they haven't succeeded because they haven't built their boat to be stable or go fast. So let's speak to the non-profit listeners who are curious about the part of this, where how do you go from announcement and $0, but a great story and a great idea and a great team to over $100 plus million of funding in your first three years alone. And then what happens day-to-day behind the scenes to make that happen? 

David Fajgenbaum: Yeah, I guess as I think about the answer to this, I sort of actually go back to that, the three things I mentioned in the hospital, vision for the future, great team around you, and sort of grind one day at a time. I mean, that was my formula to survive. And I think that's sort of our formula for these non-profits to thrive. And so we are relentlessly focused on that vision and patience that we're working towards. I mean, that is everything. Patient impact is our number one core value and it is infused into everything we do. So stay focused on that vision, which is helping to save and improve lives. That's our mission, that's all we think about. So that's number one. Two is this really, really amazing team. Can't do anything alone and this team is incredible. Across all three organizations, the teams have been incredible. But team is so essential. The right kinds of people, different kinds of backgrounds, experiences, it's just everything. And the third part is the grind part, is that it wasn't easy. Going from zero dollars is actually a year of fundraising before we raised our first million dollars. And it was a lot of meetings and it was a lot of, we love what you're doing, but is there a way we can invest here? It does have to be philanthropic. We love what you're doing. Can you work on this disease and say, well, we need to stay broad and be able to make the impact that we can. So I think it's those three things have been critical to our success. And would that second one around team. It's making sure that you emphasize the importance of a great operational team. It's easy to get excited about the AI, easy to get excited about the medical research, but it's essential that you really invest heavily and put the time into building the infrastructure to be successful. 

Scott M. Curran: And so we were at an all staff meeting for Every Cure earlier this year and you used the story, the British rowing team. That's right. Focused all of their decisions when they went to the Olympics one year about whether or not it made the boat go faster. That's right. And they somewhat controversially made the decision not to go to the opening ceremonies because it didn't make the boat go faster. But getting a good meal and sleeping and being well rested would make the boat go faster. 

David Fajgenbaum: That's right. Yeah, and so I think I love this analogy because it really gets to that first thing of, is it gonna help us to help patients to save and improve lives? Is it going to get us towards that first thing that's so important? And it's easy when you think about rowing because like the faster the boat goes, better you do, you might win a gold medal. And in their case, everything they did for the four years between their previous attempt and the Sydney Olympics, will it make the boat go faster? And they were relentless. So for us, will it help us to save and improve lives more? That if you can stay focused on that, that sort of, a lot of times you can clear away a lot of other things that you're doing. And so yeah, they didn't go to the opening ceremony. They won the gold medal the year that they, the four years that they asked if I'm making the boat go faster. And for me, I just think it's such a good example for what we got to do. 

Scott M. Curran: It's an incredible story. It has been a privilege, a pleasure, to be part, a small part of that story from where it started. I know that people can find you individually, David Fajgenbaum, online on social media. You're wonderful at telling this story and keeping the story and the work front and center. People can follow Every Cure online. They should, people should find your book, Chasing My Cure, which is an incredible read that takes us right up through your discovery. And it's going to become a movie about how you discovered your own cure. And they should follow the continuing story of David Faganbaum and Every Cure as it goes on because it is an awesome story to witness unfolding in real time. Your TED talk is online and absolutely an awesome one. So people should check that one out too. As a point of personal privilege, I would just say, I am, thank you for sharing all the stories you've shared always, but especially today, I'm so glad your mom took you on those trips and helped you, I think you're already wired for good, but I think she poured some rocket fuel on that in the best way as possible. I'm really glad you took every one of those breaths. You are a blessing in my life, in my work, in the world, and in the world of people who need hope and benefit from hope, even in their darkest times. It is such a profound privilege to be in your world and part of your story. And so thank you for being a living example of better good, David Faganbaum. 

David Fajgenbaum: So appreciate you. Thank you so much, Scott, you've been so amazing and can't believe what we've accomplished in these three years. 

Scott M. Curran: Can't wait to see what we do next. 

David Fajgenbaum: That's right, we're just getting started. 

Scott M. Curran: Thanks, buddy. 

Scott M. Curran: Thank you for tuning into Better Good. If you enjoyed the show, remember to rate, review, share, and subscribe. We're on all major podcast platforms and you can watch the full episode on YouTube.