
Let's spread the word about Every Cure.
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Ben Holderness
Shouldn't this be something that organically just explodes into common knowledge? Because it's so amazing.
Kim Holderness
We do some really stupid things on the Internet.
Ben Holderness
Yeah.
Kim Holderness
That go viral.
Ben Holderness
Yeah.
Kim Holderness
Like really stupid.
Ben Holderness
Yeah.
Kim Holderness
And this is important stuff.
David Fagenbaum
Yeah.
Ben Holderness
We get older every day. Got more wrinkles. That's okay. Yeah, we're laughing. When we age, life is like a comedy stage. And that's why we got dance lines.
Kim Holderness
Hey, everybody. I'm Kim Holderness.
Ben Holderness
And I'm Ben Holderness. And this is Laugh Lines.
Kim Holderness
Thank you for joining us. If you've ever pulled your back out reaching for a cup of coffee in the morning, you're home. You're safe here.
Ben Holderness
That's happened to both of us.
Kim Holderness
Yeah. It's a hard, hard thing to explain to a physical therapist.
David Fagenbaum
Yeah.
Ben Holderness
Like, why are you here?
Kim Holderness
I. I dared to have coffee. I will say I was editing, like a senior slideshow for Lola and her friends on an airplane this weekend, and I didn't move my neck for the 45 minute flight. And I got off the flight and I could not move.
Ben Holderness
Airplanes are where your lower back go to die.
Kim Holderness
Well, it was really my neck. And having to explain that to a physical therapist was really like, what'd you do? I sat. Anyway, we have such an incredible guest today, the kind of guest that restores your faith in humanity. I oftentimes when we get stressed out, I'll be like, it's okay. We're not saving lives. But he's, he's actually saving lives.
Ben Holderness
Right. Not only is he saving lives, we'll get to the story in a minute. But he saved his own life. And he is. The scalability of how many lives he could save is truly staggering. And he's already saved a lot.
Kim Holderness
He kind of needs our help and he needs to get the story out. So that's. It's a, it's an important lesson. But before we get to people saving lives and doing really important work, we have to promote ourselves. Let's talk about us and the work we're doing.
Ben Holderness
Yeah. Because I feel like we may not be saving lives, but we did write a children's book. The transition is, you can't have David on his show when we're trying to sell stuff.
Kim Holderness
He's not taking a salary, working for a nonprofit, saving lives. But will you pretty please buy our children's book?
Ben Holderness
It's really good.
Kim Holderness
No, but okay. We aren't saving lives, but we are helping people. We are, honey, we're helping people. We are helping people.
Ben Holderness
That's what we're going to keep telling ourselves. We are helping people. Quick elevator pitch. If you've read ADHD is Awesome or you've heard of it, I think it's been a very successful book. Not necessarily. I don't mean financially successful, although we're not losing money. But I think it's really been successful in the way that it's helped people understand their brain. It's helped destigmatize shame. And the one thing that was kind of maybe missing, if you will, was it was mainly geared toward adults. And a lot of people who get diagnosed with ADHD are young children.
Kim Holderness
So we've written a children's book and we have defied the laws of space and time and it's coming out in October so it is available for pre sale. Now head to all you can be with ADHD.com and check out our show notes for more information about how to order your copy. And we had to explain this with ADHD is awesome. Pre sales are so important on a book because it goes into that first week sales numbers and it just helps bookstores. It gets the attention of book buyers and bookstores. And the big push I'm so excited for this is school libraries.
David Fagenbaum
Yes.
Kim Holderness
So we're going to be doing hopefully we're going to be getting invited to a lot of library and book conventions and as well as meeting with adults and doing the traditional book tour stuff, we're going to be going to schools. And it just like my, my, it makes my heart go all like, you're looking forward to that crackly. But like in a good way. Like just, it's just like, you know what I mean? It makes me so happy. I'm so excited about this.
Ben Holderness
As am I. It's gonna be great. Also, stay tuned to the end of the show when we discuss things like are we done with movie theaters? Yikes. And we'll take a question from the Laugh line about some advice that we might give our past selves.
Kim Holderness
What I love most about this podcast pen is the community that it is created in the comment section.
Ben Holderness
It's happening.
Kim Holderness
It's happening. Yeah.
Ben Holderness
YouTube is nice because it's much easier to comment while you're. If you watch instead of listen to it. Like, bam. There's a comment section right there.
Kim Holderness
Right. And so the other, like itunes, Great Spotify, love you. But it's hard to. You don't have comment sections engaged in that way. And we love our listeners and we get, we're getting a lot of notes from people who listen saying don't forget us. So we are an audio first. But the comment section has been amazing. In a recent podcast we have this segment and it's Gen Z translations, right. Where we talk about things our kids are saying and we define them for the Gen X brain. We talked about a Borg, which stands for blackout Rage Gallon.
Ben Holderness
Sure does.
Kim Holderness
Okay. The theory is this, if you haven't seen the episode, you make your own gallon of stuff. And it could, my defense is, I think it could just be like Gatorade. Right?
Ben Holderness
I mean the easiest way to describe it is you're at a, you're at a party and there's like a bar where you make your own drink and you pour it into a red solo cup.
Kim Holderness
Right?
Ben Holderness
Right. Whatever it is. And you just. Now you just poured into a giant.
Kim Holderness
Milk gallon, but you're bringing it yourself.
Ben Holderness
And you. That is your drink.
Kim Holderness
So I had made a comment on TikTok and then people magazine. Love you. People magazine, they just did an exclusive book reveal for us. They quoted me. And so take a listen to what that quote was from a previous podcast quote.
Ben Holderness
Borg is way better than the stuff I drank out of bathtubs and line trash cans when I was in college. So People magazine comes out with an article. All you have to do is Google Kim Holderness Borg, and you'll pull it right up. Thank God my wife has a good sense of humor because it was written as Borg. The damaging trend that college children are doing, and it's all these doctors, like Dr. Mitchell Trubisky. It was like, oh, it can cause lots of hospitalization. However, Internet influencer Kim Holderness disagrees and thinks that Borging is awesome.
Kim Holderness
We talked about that. And we talked about how I actually am a fan of especially young women being in control of what they're drinking at parties.
Ben Holderness
You can be a fan of that without being a fan of drinking a whole gallon of liquor.
Kim Holderness
Correct?
Ben Holderness
Right. Those are not mutually exclusive.
Kim Holderness
Jared Rosso. Rosso commented on our YouTube, we had what we called purple Jesus. The cooler is filled with some alcohol and purple grape drink. As the cooler starts to empty, we would just add more alcohol. At the end of the night, you would find, like, rings, bracelets, other things, because people would just dip their cup into the cooler and their jewelry would fall off. So not only is it incredibly unsanitary, what the heck?
Ben Holderness
So the drunker you get, the more the alcohol contact content. Sounds to me like they barely added any juice. They just kept adding alcohol, grain alcohol or whatever. Here's the thing. You tell me that story in the 90s, I'm like, yeah, it sounds like a Saturday.
Kim Holderness
Like, give me a Dixie cup.
Ben Holderness
Exactly. That was probably maybe one of our bracelets, Jelly bracelets or whatever we called those things.
Kim Holderness
If I heard my daughter do this, I would. I would take herself. I would find a punishment. Right? But aren't you so glad that there's just no evidence of this? Like, there are not pictures of this.
Ben Holderness
I mean, there probably are pictures, but they're in. They're not digital. They're not on the Internet. They're in someone's photo album, at least for me. Like, in college, there was this one guy named Chuck, and he was, like, in his 40s, and he would go to every single party, every single night and take pictures and then you pay for them.
Kim Holderness
That. No, I think that was very common. I wasn't. No, I wasn't in a. Sam, you're.
Sam Allen
So 40 year old man is hanging out at a sorority college party.
Kim Holderness
Well, everyone knew everything was inappropriate. Everything was Sam. Everything in the 90s was inappropriate.
Ben Holderness
He had a mustache and that's okay.
Kim Holderness
And a van with no windows.
Ben Holderness
Listen, I will bet you any amount of money we get multiple comments from people who went to uva. Who knew Chuck. Chuck was the nicest guy. He always had a smile on his face.
Kim Holderness
And you know who else was really nice?
Ben Holderness
Who?
Kim Holderness
Ted Bundy. Famously charming. Okay, Chuck is great. I'm sure.
Ben Holderness
I wouldn't say it was Chuck Lang.
Kim Holderness
Chuck found a business opportunity. Right. So go Chuck.
Ben Holderness
Hang on. Bryce will know. This is my friend from college. Friends from college. Hey, guys. Anyone remember Chuck's last name? The photographer. That's all I said. Bryce will have an answer inside of four seconds. Okay, stay tuned. We're going to get back to this Chuck thing. My buddy knew his last name immediately. We're going to check back in with Chuck later at the end of the show.
Kim Holderness
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Kim Holderness
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Ben Holderness
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Kim Holderness
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Ben Holderness
Go to a doctor?
Kim Holderness
Exactly. So when you're going through a tough time and anxiety and stress are piling up, finding a therapist should be your first step.
Ben Holderness
Yeah, but unfortunately, finding one who actually takes your insurance can be tough. That's where most of these online therapy platforms fall short.
Kim Holderness
Luckily, Rula does things differently. They partner with over 100 insurance plans, making the average copay just $15 per session.
Ben Holderness
That's real therapy from licensed professionals at price. That actually makes sense.
Kim Holderness
Think about it. You use your insurance benefits to maintain your physical health, so why wouldn't you do the same for your mental health?
Ben Holderness
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Kim Holderness
Plus, Rula sticks with you throughout your journey, checking in to make sure your care is helping you move forward.
Ben Holderness
Thousands of people are already using Rula to get affordable, high quality therapy that is actually covered by insurance. So visit rula.comholderness to get started.
Kim Holderness
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Ben Holderness
Want to say before we say hello to David, we actually have met him before and we've heard his entire story. It moved us both to tears. And I think what I'm planning on doing also because he's freaking perfect, is I'm really going to hit up, like, what is his biggest weakness and what are some really awful things about him that nobody else knows? Otherwise I'm just going to come away from this with a total sense of, like, worthlessness because he's unbelievable.
Kim Holderness
He's unbelievable. And when we met him, he's handsome. I know he looks like a Disney son of a gun and he's kind like, it's. It's so annoying.
Ben Holderness
Dr. David Fagenbaum is not your average doctor. He is a physician, scientist, author, former college quarterback, and a man who was so close to death five times that he's been read his last rites more than once. Diagnosed with a rare and deadly disease called Castleman disease while in medical school, David didn't just survive. He hunted down his own cure by repurposing an existing drug that was never intended for his condition. He's been in remission ever since.
Kim Holderness
Now he's on a mission to do for others what he has done for himself. As the co founder of EveryCure, David is unlocking the untapped potential of existing medicines to treat thousands of diseases hiding in plain sight. His groundbreaking work has been featured on the New York Times, 60 Minutes, and even the halls of Congress. And now, most importantly, the Laugh Lines podcast. Welcome to the show, David. My go to line is, guys, don't stress. We're not saving lives. Okay, but you are actually saving lives. So do you have an estimate of how many people your work has saved?
David Fagenbaum
Yeah. It's amazing to say this, but it's certainly in the thousands and the exact number. What's almost even special about the uncertainty is that, like, there's people getting drugs today and tomorrow and the next day that I'll never even meet. I'll never even hear their story. But I know that they got a drug that we help to advance. It's almost like the uncertainty is almost as beautiful as the ones we know about.
Ben Holderness
Okay, let's back up. Let's hear your story and how you saved all these lives.
David Fagenbaum
Sure. So I was a med student at Penn. Well, first off, I grew up in Raleigh, just down the street from where you guys are, and came to Penn for medical school after. After college. And I wanted to be a doctor in memory of my mom. She passed away from cancer When I was a sophomore in college and I was really making progr that goal, I was all the way in my third year of med school, and then I got critically ill out of nowhere. So my liver, my kidneys, my bone marrow, my heart, my lungs, my liver, they all began to shut down, and we didn't know why. So I was hospitalized in the icu, and I was so sick that my family came in and said their goodbyes to me. Priest read me my last rights. Thankfully, I got diagnosed with this horrible disease called. Well, I guess I'm not thankful I got diagnosed with a horrible dish disease. I'm thankful I got a diagnosis which happened to be a horrible disease called Castleman disease. And with that diagnosis came a lot of chemotherapy and some really, really difficult months in the icu. But the chemo worked. But then I kept relapsing over and over again. And after a couple years of this, I realized that there was no way I could survive unless we could find an existing drug or a drug to save my life, and went on this journey, and I found this drug, and it's now been over 11 years. I've been in remission.
Kim Holderness
How did you figure out that there was a treatment for Castleman's disease sitting on a shelf somewhere and that you would be. That you should try it yourself?
David Fagenbaum
So I started running experiments on my own blood samples. And it was because I kept relapsing over and over again, and with each relapse, I was. I was close to dying, and. And I had this amazing girlfriend at the time, Caitlin, that I wanted to have a life with a family, with these amazing sisters and dad and friends that I wanted to. To be around for. And. But I kept relapsing. I knew that. That I wouldn't survive unless I could find a drug. And so right before my fifth relapse, I started saving blood samples on myself every couple of weeks. And it was because I was worried that it would come back. I knew if it came back, I would want to have those blood samples so I could try to figure out, like, what caused this, what happened here. And so I've been storing these blood samples, putting them in this freezer in this lab just down the street at Penn. And. And sure enough, it came back for the fifth time and almost killed me for a fifth time. Got a lot of chemotherapy that saved my life. But once I got out of the hospital, and actually, even while still in the hospital, all I could think about were those blood samples. I was like, I got to get back to the Lab. Maybe there's something in there. Maybe there's an insight in there. And so I started doing all these experiments on those samples and eventually figured out that this communication line in your immune system, which basically helps to, helps immune cells to talk to one another, was in overdrive. And I thought maybe we could turn it off.
Kim Holderness
Can you just tell me what is the drug that you found that does that and what was it meant for?
David Fagenbaum
Yeah, the drug's called Sirolimus. It was made for organ transplant rejection. So if you were to get a kidney, your immune system would destroy that kidney unless you took one of these drugs, which prevents it from being rejected. And amazingly, this drug was found on the island of rapa NUI over 50 years ago in the soil of Easter island, basically. And some amazing researchers developed it into a drug for organ transplantation. And then, and then I used it as the first patient ever with Castleman disease.
Ben Holderness
All right, we're going to get to how this has turned into like a major opportunity for all medicines and for thousands of people. We're going to get to that in just a second. I want to go back because I've been wanting to ask you this ever since I heard your story. So you, you kept almost dying. You kept essentially resurrecting and then in between you're like working tirelessly. If I go for a long walk, I need to rest. This is you almost dying in your body, like shutting down. I'm, I'm just, I'm, I'm imagining you like in a hospital gown. Like, you know how like the guy in the movie just like pulls everything off and runs out of the hospital bed bare assed and like goes whatever, to whatever he's gonna do next? Like, did you, how, how were you able to do this over and over again while deathly ill, like just a few weeks, months before?
David Fagenbaum
Yeah, so it was basically that because I was so ill and because I knew that I was likely to die so soon, that what basically gave me this strength to like, fight harder, it was this sort of like, it was because it was so hard and it was because I felt so horrible. And it was also because I wanted that life with Caitlyn and I wanted to treat patients in memory of my mom. It was like that vision for what I was going for was so clear and the pain of what I was going through was so bad and I felt so horrible that I was like, if I want to get from where I am to there, I just have to find this like, extra gear and, and just fight and Just push. Because it wasn't like, may, you're gonna die. It was like, you're. You're going to die. You have weeks left. So, you know, one, one decision which I could have taken certainly, and I would have been really proud of, that decision would have been like, to really just spend quality time with my family, like, really soak up those moments with Caitlin, my dad, and my sisters. And the other approach, which probably was like, the stupid approach, was like to actually spend my time, like, trying to find a cure for myself. And which meant I was not spending my time with Caitlyn, I wasn't spending time with my dad, wasn't spending my time with my s. Um, but. But it, it paid off because, you know, I was able to find a drug.
Kim Holderness
You found that the drug you needed for your cure more or less was. Had been existing, and it was, you know, approved for a condition, a different condition. That got you thinking, hey, if this worked for me, there's probably other rare diseases and existing medicines we can repurpose. Tell us about the work you're doing with every cure.
David Fagenbaum
Sure. So, yeah, first it was me, and then we found a drug for a rare cancer called angiosarcoma, and then for a rare disease called Poem Syndrome, and then more Castleman's drugs. And like, with every one of these, it just kept being like, oh, my gosh, are there like, more out there? I mean, I know I thought I got really lucky, and I did get very lucky to find this for me, but are there more of these? And so that's just been really all I have been able to think about for the last 11 years is how many more of these drugs are out there. And about three years ago, I joined together with my co founders for Every Cure, Grant Mitchell and Tracy Sakura. And we decided rather than just like wondering how many more cures are there out there that could help people, we said, let's turn our hope into action. Let's get to work. Let's utilize AI to look across all drugs, all diseases, to find the best opportunities. And then we take those opportunities forward. We study them in the lab and trials, and then we get them to patients.
Ben Holderness
I think you told me there were like 4,000 different diseases, 13,000 different medicines, and then when you cross pollinate that, like, how many possibilities are there?
David Fagenbaum
Yes, it's 4,000 drugs, 18,000 diseases. So 75 million possibilities. If you tried every drug, for every disease, you'd have 75 million chances. And of course, no humans can ever consider that, those sorts of numbers. But yeah, we utilize AI to help us to find those best options.
Kim Holderness
I love also hearing about the benefits of AI.
Ben Holderness
Yeah, thanks. Just so you know, I am. I'm like one of these doomsday preppers who doesn't love the thought of AI Because I watch too much science fiction, so. This is nice.
Kim Holderness
Yeah, yeah. No, this. This is. So, can you also tell me about what's been uncovered in some nonverbal autistic children, what you've learned there?
David Fagenbaum
That's right. So we launched the nonprofit three years ago, and we did a lot of fundraising, or I guess fun trying to raise. We didn't really raise too much money early on.
Ben Holderness
Fun trying.
Kim Holderness
Fun trying.
David Fagenbaum
We had fun trying. A lot of fun trying.
Ben Holderness
I've been on a lot of fun trying drives before, for sure.
David Fagenbaum
Yes, we did that for a couple of years. But about a year ago, we really were able to raise the funds we needed to build out our team. So we've been utilizing this artificial intelligence algorithm for the last year and a half or so, and we have an amazing team of physicians and researchers and advocates all working together. And one of our programs that we're really excited about is within autism. And what we've learned is that a large portion of children, in fact somewhere between 20% and maybe even as high as 50% of children with autism have antibodies that prevent a vitamin called folate from getting into your brain. And. And Kim, you'll probably remember from when you were pregnant with your children, folate is really important for brain development, and so you probably took a lot of folate during your pregnancy. It's critical. Brains need folate. Well, it turns out a large portion of kids with autism get no folate in their brain because they have these antibodies that prevent folate from getting there and on its own. That's devastating and heartbreaking to know that that's. That's why some of the symptoms are occurring. But what's really exciting is that there's another way to get folate into the. And it's called the rfc, which basically, if you use a derivative of folate, so not exactly fully, but something called folinic acid, it can get into the brain through that channel. And there have been three trials. The most recent one came out this past fall of giving this derivative of folate called leucavorin, and seeing improvements in kids with their verbal communication, kids saying words for the first time. I met a patient named Mason who was non verbal for three years. And within three days of starting, Luke of Warren said his first word, and he said the word more. And as the parent of two kids, I feel like all my kids do is ask me for more, because I feel like more is, like the essential word kid word. It's. Of course it's the first word he said. It literally was. And. And there's a video of him and Kim, if you can see this. He jumps up and down when his mom says, you want more. You just said more. He's so the first time in his life, he's saying a word that his parents understood. And it's like the idea that this drug is out there, it's simple, and not getting these kids is just like. It's why we started every cure.
Ben Holderness
This is amazing. You've obviously, you've met children with autism, you've met parents of children with autism. You know how deeply passionate all of this is. This is a trial just to make this very clear. Like, this is step number, I don't know, three out of maybe 20. At which point, like, a doctor can prescribe this and give it to someone. We're sitting here, like, really excited, nicking. Let's go. But there's barriers, right?
David Fagenbaum
Yes and no. So because leucavorin is already FDA approved, and it was actually utilized for. To help basically make chemotherapy more effective. So if you give leucovorin to someone who's on this one type of chemotherapy makes the chemotherapy more effective. So that's why this derivative of folate was made in the first place.
Kim Holderness
Okay.
David Fagenbaum
And so therefore, it's at your cvs. And there have now been three trials. They're all relatively small of leucovorin and autism. But right now, based on the results that exist, and there's actually even a blood test that you can run that can help you to get a sensor if you might have. If your kid or you may have these antibodies, doctors can actually prescribe it today. Wow. So. So because it's already approved for this to be this, you know, drug that goes with people that have. That are getting chemotherapy. So it's available, it could be prescribed. It's quite inexpensive. The holdup is that some doctors might want to see a fourth clinical trial. You know, it's all. More data is always better. So some doctors might want to see a fourth clinical tr. The thing that I think is really holding up its use is a lack of awareness. Pen like. Like most. Most doctors and patients aren't even aware that these three trials were done. And it's in part because there's, like, millions of studies done every year. And it's really Hard to keep track of these things. Leucovorin is a very inexpensive old medicine, so there's no company that's going to help to raise awareness for it. So, like, this is why we created every cure is find these things that look promising do in some. We're doing lab work to better understand how it works. But we're also thinking about doing another trial and we're also thinking about just getting the word out about it.
Kim Holderness
So there's not going to be a Super bowl commercial for this because the drunk. The drug maker's not going to profit off of this.
David Fagenbaum
That's right.
Kim Holderness
But potentially it could help a lot of people. So in my position, my children are not on the autism spectrum, but several families that we're very close to have children on the autism spectrum. I know one of my friends said to me, for the love of God, if one more person sends me an article about what you sit or sitting down or like, stop eating gluten and dairy. And like. So I'm very hesitant to. To share and say, like, you should do this. So how do we spread? What's the best way? Obviously, we have a podcast. You're listening here. But if somebody wants. If somebody wants to forward it to their friends who, you know, have somebody they love with autism, like, what's the. Who's the best person to send this to? Is there a specific type of autism, you know, symptom? Like, tell me what to do.
David Fagenbaum
Sure. So what I would suggest is sending a link to everycure.org ASD, which is the website that we put together where we summarize this information. And the next thing that I would suggest when you send along that link is to let them know that there's a blood test that can be run to determine if your child has one of these antibodies. And it's not guaranteed if you have the antibody, it's not guaranteed that it's going to help. And if you don't, it's not guaranteed to work. It won't help, but it is more likely to help if you have the antibody. So you could get this blood test done, which will give you that additional bit of data. And I think it's important. You gave such an important perspective from a lot of parents of children that are on the autism. Autism spectrum. And that's that this is not a quote unquote cure that change everything. And a lot of times, even just the term cure is sort of offensive to people that are on the spectrum and even with other conditions. But it is a medicine that according to these trials helps with verbal communication, helps with how you speak and communicate with the world. And as you know, the parent of two kids, the way we communicate verbally is so important to how I can give them the love and the support that they need. So it's really, it's really around that part.
Ben Holderness
It's not just necessarily for people with non verbal autism because there's people who have autism who have verbal challenges who aren't non verbal.
David Fagenbaum
Right? That's exactly right. Yes. And particularly the earlier the data. There's more data on younger than there is older. We actually, I don't think there have been any trials in anyone over 14 years old. It's all been younger individuals. And the verbal improvement has been the most striking part.
Kim Holderness
What do you need from us? What do you need from us sitting here with microphones and the people who are listening?
Paige DeSorbo
Yeah.
Ben Holderness
And from our peeps.
Kim Holderness
Yeah, our community, they're really good and generous people. So what can we do?
David Fagenbaum
Yeah, there are a few things. So one is helping to get the word out about some of these really promising treatments. You know, we shared a bit about living leucovorin and autism. Getting the word out about that is really important. There's a blood test. There's just a lack of awareness right now. Another is lidocaine for breast cancer. There's some really interesting and promising data that injecting around the tumor before it's resected can reduce the risk of mortality at five years after the tumor comes out. We're doing a lot of work right now. We're actually studying lidocaine across 133 cancers to understand are there other cancers that might benefit from lidocaine? Lidocaine is this cheap old numbing medicine you get to the dentist. Right, right. And so, so we want to understand, are there more cancers that could benefit from it? And maybe we'll do another trial or maybe we'll just start getting the word out. And so helping us to spread the word when we find these things, because what we're finding is that there are really great opportunities that almost always are very inexpensive drugs that there just isn't a path for anyone to profit off of them. And so there's no megaphones. And so you guys are providing a megaphone here and your listeners can provide a megaphone phone. And so as we identify things and as we share them on our EveryCure website and social media, helping to amplify those is huge. Another, as we described, is that this research requires funding. We have to do clinical trials to do Laboratory work. So donating towards our work@everycure.org is a great way to support this mission. And then the third is that if you work in the healthcare industry, if you're in a life science company or a pharma company, there might be ways that you guys could donate data towards or work work. You might be able to donate insights or share insights with us that using this drug could be useful in this additional way. But in my opinion, this is like an all hands on deck approach. It's, you know, this little non profit, every cure with me and my amazing team. We're small, we're mighty, but we're not going to be able to get close to untapping the potential of all the drugs out there to treat all the diseases they can treat. It's going to take all of us working together and it's really got to be all hands on deck.
Kim Holderness
As you were talking, I'm thinking of, and then this is so nuanced, but I'm thinking like the billionaires who are going up to space, I'm like, dude, what they could do, like what you could do with that money is.
Ben Holderness
You're thinking of the billionaires. I'm thinking of pharmacy companies. Like it's just like we have a lot of them in our area. You know this, David? Yeah, absolutely. I know some of the executives, they're great people. And I like, to me this isn't a negative thought. I'm just sitting here thinking, man, like what pharmacy wouldn't, pharmaceutical company wouldn't want to get on this train if for nothing else than good pr, like the ability to say look what we're doing because let's be honest, like Big Pharma. There's a reason they call it Big Pharma. It doesn't have the world's greatest pub, like public.
Kim Holderness
They're in it for profit.
Ben Holderness
Right? Yeah. Like what are your thoughts on that, David?
David Fagenbaum
I totally agree. And I, and, and I should also say that I'm so thankful for pharma. Like I'm so grateful for all the drugs they made. Like, like I'm alive. I'm here with you guys because of this Pfizer developed for organ transplantation. Someone dug in the soil of this island, you know, rapid NUI, 70 years ago and found this drug. And then it saved my life, you know, 70 years later. Like, I'm so thankful that there's companies that dig in the soil and find drugs. Right? And I realized that even though they're these amazing companies finding great drugs, I know that in our system, it's just not profitable for them to study the really small diseases. And I especially know that once their drug becomes generic and really inexpensive, no one makes any money off finding new uses for those medicines. And so, given that world that we're in, I would love for us to figure out more ways to work with the companies that made these drugs in the first place to help us to figure out more uses for them.
Kim Holderness
You're amazing.
Ben Holderness
Yeah, you are.
Kim Holderness
I'm just. Part of me. I'm just sitting here in awe of what you do. And I'm like, I'm gonna dedicate my life to spreading the word about every. Every cure. And then part of me just feels like, damn, he's younger than me. Yeah, he's really good.
Ben Holderness
Look, that's where I am. That's where I am. So, like, you're. You're. You're a better person than me. Kim, she's. She's inspired. She wants to work harder. I'm super insecure when talking to you because you're young, handsome, smart. You're curing. Curing all these diseases. You're essentially a superhero. You've come back to life five times. So I thought we'd end this, this interview with just some questions, finding out some stuff that sucks about David.
David Fagenbaum
Yeah. What.
Kim Holderness
What are you doing, David?
David Fagenbaum
There's a lot of them.
Ben Holderness
David.
Kim Holderness
Tell me.
Ben Holderness
Tell me.
David Fagenbaum
Good thing Caitlyn's not here, by the way. I should mention you married girlfriend that I was. That I was telling you I wanted that life with. We got married, and she's. She's my wife now, but I'm glad she's on this podcast to tell you all the things that suck about.
Ben Holderness
Well, I'm going to. I'm going to dig. So what are. Tell me something you're really bad at.
David Fagenbaum
I don't know how to ride a bike, Pen. I learned. I learned how to ride a bike when I was a little kid, and I rode into my neighbor's garage door. Literally. I wrote it. I was 5 years old, and my mom was with me, and I got up from hitting the garage door, and I said, mom, I'm never gonna ride a bike again. I haven't ridden a bike since then. Do you know what it's like as a kid to have to run after your friends while they're all riding a bike? Like, I was in Raleigh. It's hot in the summer.
Instacart Advertiser
Yeah.
Ben Holderness
Everyone rides bikes here. Everyone rides bikes here.
David Fagenbaum
I was running. What? All the other kids were riding their bikes. Very tough.
Kim Holderness
Oh, David, I love that. I mean, I sort of love that.
Ben Holderness
I feel so much better now.
David Fagenbaum
But you know what? You know what's on going good though, Pen, is that my six and a half year old has not yet taken off the training wheels. And it's partly my fault because I don't really want her to start being able to ride a bike before me. So, like, I'm not sure if I should teach her. And then, and then I had this, like, that's really depressing when your 6 year old can ride or if I should learn myself. So one of those two have to happen this summer.
Kim Holderness
Oh, I love that so much.
Ben Holderness
This has actually had a good effect because now I like him even more. Thank you.
Kim Holderness
You're so shallow.
David Fagenbaum
I could not have liked either of you guys anymore. And so we're. We're hitting that limit.
Ben Holderness
I mean, I already liked, but now I really like.
Kim Holderness
Now you really like them.
Ben Holderness
Yeah, exactly.
Kim Holderness
You are a joy to talk to. And tell us one more time the website that people. Well, put it in our show notes. We have a blog post that goes with it. We'll put it on Instagram, but tell us where people should be going to find your work and to help support you.
David Fagenbaum
Go to everycure.org to learn more about the work that we're doing. You can find me on social, so I'm very hard to spell last name, but David Fagenbaum on. On social, you can find me there. And helping to spread the word is so important. I mean, literally think about patients like Mason that I shared about and patients that could benefit from a lidocaine injection for their breast cancer. Literally, getting the word out could actually be the difference between someone being able to speak and not speak or live and not live. And. And that's what's so exciting but also sort of so overwhelming for, for, you know, our little nonprofit is that, like, we're really good with machine learning and AI. We're really good with advancing treatment treatments. We're not so good with getting the word out. And so that's why I'm so thankful for both of you for helping us.
Kim Holderness
Thank you for taking time to talk to us. And we can't wait to spread the word about all the work you're doing. I am so inspired by him and the people on his team, and I would love to devote whatever resources and brain power I have to help him spread the word. Not just on these channels, but, you know, in other ways.
Ben Holderness
It seems incredibly obvious to me that, like, this will be wildly successful. And I was Expecting him to mention more barriers. Right. I thought maybe we were kind of early on in this and it was going to take a while. We weren't really sure. But the fact that a doctor can actually prescribe Lucavorin right now and didn't before, and all of these trials have shown success. Let's. Let's get the word out.
Kim Holderness
Yeah.
Ben Holderness
Or like, shouldn't this be something that organically just. Just explodes into common knowledge? Because it's so amazing.
Kim Holderness
That's what I was left with. We do some really stupid things on the Internet.
Ben Holderness
Yeah.
Kim Holderness
That go viral.
Ben Holderness
Yeah.
Kim Holderness
Like really stupid.
Ben Holderness
Yeah.
Kim Holderness
And this is important stuff.
Ben Holderness
I like all of the things that just came into my mind that have been famous on the Internet, including us, for. For the last, like several years, are really dumb.
Kim Holderness
Really dumb. Before we did this interview, I had looked up because I know you have a healthy skepticism of AI, And I.
Ben Holderness
Asked because of how much AI helped.
Kim Holderness
David and the algorithm.
Ben Holderness
Yes. Okay.
Kim Holderness
So I asked my AI robot because I picture my ChatGPT robot like she's a friend and I say please and thank you so she doesn't come after me. Like, what are some non traditional benefits and ways people use AI, Cure diseases, save lives? And there's a bark translator called Pet Puls P E T P U L S and analyzes your dog's bark, interpret emotions. See, there's acting coaches and there's something called Riz GPT.
David Fagenbaum
Okay.
Kim Holderness
And it can generate real time conversation starters, icebreakers and flirty messages.
Ben Holderness
Okay. So it just basically flirts for you. It's your Steve Martin and Roxanne. It's your Cyrano de Bergerac.
Kim Holderness
Oh, my gosh.
Ben Holderness
I got it.
Kim Holderness
Oh, my God. He's just made this. So. Yes, yes, yes.
Ben Holderness
Did I just make that? Older than it needed to be, but that's essentially what it is.
Kim Holderness
Yeah. So. Okay, so AI for good.
Ben Holderness
Yeah.
Kim Holderness
Have you ever asked ChatGPT anything?
Ben Holderness
Not yet, but all of my friends do. They're talking to this person named Grok now.
Kim Holderness
What?
Ben Holderness
I guess, like, yeah, I think that might be. It might be Elon Musk's new AI. But the thing that they like about Grok is you ask for a summary of someone and you can do the unhinged version. Version. So like the Grok version of your life, it's. It'll be like, really funny. Sam, do you want to get Grok to do a unhinged biography of Kim?
Sam Allen
Do you want me to read that?
Ben Holderness
Yeah. We're gonna have to get video of this, so.
Sam Allen
Okay. Kim Dean holderness, born on March 27, 1976 in the swampy, sun soaked chaos of Sarasota, Florida, is a woman who's been slingshotting through life like a rogue comet, fueled by caffeine, dance moves, and an unyielding need to make people laugh.
Ben Holderness
I like this.
Sam Allen
At 49, she's not just a YouTube sensation, actress, journalist, author, podcast and CEO. She's a human tornado who's turned her family into a viral empire while dodging Internet trolls and mean YouTube comments with the grace of a seasoned gladiator. Picture young Kim, a competitive dancer, twirling through Florida's humid haze, probably perfecting her jazz hands while dreaming of something bigger than the Sunshine State strip malls.
Ben Holderness
Can I just say, Grok is being very polite and complimentary to you while being kind of an ass to forget Florida.
Sam Allen
Yeah, I'm just throwing that out there for Florida.
Ben Holderness
Yeah.
Sam Allen
Kim's not just in these videos. She's the beating heart, often stealing the show with her comedic timing. I fully agree with that willingness to look gloriously ridiculous.
Kim Holderness
Oh, that's kind of.
Ben Holderness
I like that sentence. I think that's accurate.
Sam Allen
This is like they have everything on you.
Kim Holderness
I still have a skepticism of Elon Musk, but I'm digging the compliments. Okay, again, the community here on Laugh Line Lines is amazing. So time to go to the Laugh Line. Let's cue the music.
Ben Holderness
This is from Katie. Sorry, Katie, I have to put this farther away from my face so I can see it. My husband and I turned 40 this past year with a now tween and teen. I can't help but wonder, what advice would you give to your 40 year old selves? Neither of us have other siblings to lean on for wisdom and I'm grateful to have found your podcast.
Kim Holderness
Oh, first of all, Katie, thank you for writing in. I am still in my 40s. For the record, I'm still 49. What advice would you give your 40 year old self?
Ben Holderness
Single leg workouts are super important. You don't want to do them, they suck. But like single leg squats, pistols, like all that stuff will keep you from needing new knees. I probably should have gotten new knees five years ago and I started doing those, so that was nice. My biggest advice in parenting is if you can let. Let it happen.
Kim Holderness
Yeah, let it happen. That's exactly what I was gonna say.
Ben Holderness
Let it. Let it go when you can. And I, I know that that's very difficult for some parents. I think you and I are in the lower percentile of let it goedness.
Kim Holderness
In that we suck of it.
Ben Holderness
Yeah, yeah, yeah. And when we have, though, it's when we saw real growth with our kids was when we let it go.
Kim Holderness
Yeah.
Ben Holderness
When we, like when we let them fail, when we let things go wrong and we let them sit in sad moments and not try to fix them. Like, that's when the real growth happened.
Kim Holderness
I would. As a parent, my advice is exactly that, you know, let your kids solve their own problems. I think I jumped in and continue to jump in more than I should.
Ben Holderness
Yeah. But we can give the advice.
Kim Holderness
We can give the advice something. At age 40, 10 years ago in my parenting journey, I wish I had known as just a person walking in this world, I wish I knew more about money and, like, you know, because you have in your 20s and 30s, like, you're not really making a lot of money and you're having kids and everything, but, like, I wish I knew more about how to, like, have a retirement savings.
Ben Holderness
Yeah.
Kim Holderness
And I. I wish I understood it instead of just. Just like, oh, here's the. Like, it comes out of my paycheck and it goes to this. I wish I had spent more time. I feel like I have a grasp on it now, but if I had known what I know now at 40, we would be much farther ahead.
David Fagenbaum
Yep.
Kim Holderness
So that's that. And as a married person, I would. If. If you. It's just a very busy time. Typically in a career, I feel like 40s are probably the biggest grind time.
Ben Holderness
Yeah.
Kim Holderness
For a career. And so just hold on. Just. Just hold on and make time for.
Ben Holderness
Each other if you can.
Kim Holderness
Yeah.
Ben Holderness
And finally go out, travel. If you get invited to places, show up.
Kim Holderness
Yeah.
Ben Holderness
Because when you turn 50, you're gonna want to go less. You don't want to sit on your.
Kim Holderness
Butt because you've gone out when you're 40.
Ben Holderness
Yeah. Because you've gone out because you've gotten it all.
Kim Holderness
You're like, yeah, I've done it.
Ben Holderness
Well, also, your body just stops recovering from any sort of partying or fun that you have. My mom, once you turn 50.
Kim Holderness
So my mom traveled a lot in her 50s.
Ben Holderness
Yeah.
Kim Holderness
And the advice she gave is don't wait to retire to travel, because by that point, your knees and body has gone and you're not going to want to walk.
Ben Holderness
That's right.
Kim Holderness
20,000 steps a day. So. Well, thank you for writing and I love that community. Okay, we have officially renamed this segment Are we Done with.
Ben Holderness
Oh, it's time for Are we Done?
Kim Holderness
It was asked to us from our community. If we are Done with movie theaters. I. My instinct is, again, we've learned this about me. I don't like to be told that I can't do something right.
Ben Holderness
You're not good. You're not good at this segment.
Kim Holderness
So my instinct was I love a movie theater.
Ben Holderness
I know you do.
Kim Holderness
I love a movie theater. On like a rainy July afternoon. Big bucket of popcorn. Then I had to think about the last time I went to a movie.
Ben Holderness
Right. When was. Was it.
Kim Holderness
I saw Wicked in December.
Ben Holderness
Yes.
Kim Holderness
And that was great. And it was a whole bunch of Lola's best friends and their moms, and it was a whole girl trip when we wore pink or green or whatever. I love Wicked. It's one of my favorite musicals. I've seen it on Broadway, I think three times. When we lived in New York, we could get cheap tickets.
Ben Holderness
Same.
Kim Holderness
Love it, love it, love it. I did fall asleep in because it was so comfortable.
Ben Holderness
You fell asleep in the.
Kim Holderness
Because I went to one of those movie theaters that has, like, the reclining seats, and if you order on the other the app, they just bring you food. And I got popcorn, and then I got like, some Sour Patch watermelon. And then I got like a good old Diet Coke. And I fell asleep with caffeine despite the Diet Coke.
Ben Holderness
Okay.
Kim Holderness
It was dark and cold. So I'm not done with. I just have slowed down on movie theaters.
Ben Holderness
It sounds like you're getting close to done with.
Kim Holderness
I. But I still. I want them to be there in case I want to go.
Ben Holderness
Okay.
Kim Holderness
Yeah.
Ben Holderness
Okay.
Kim Holderness
What about you?
Ben Holderness
I am done with any movie movie that doesn't have Tom Cruise in a movie theater. I will go to watch that little man run with his hands like this. I don't care when they could. If they're like, hey, we're putting Risky Business back up for one night only. I might even go to watch that. Shout out to Rebecca De Mornay.
Kim Holderness
So, but tell me about the. His run. Can you describe it for me?
Ben Holderness
I mean, it's very. It's elbowy, its elbows are in, and it's very karate hands. It's nothing else. And he does it in every single movie. There's a YouTube clip of 12 minutes of Tom Cruise run running. Like, starting back when he was in his teens. It's one of the best YouTube clips ever made. I think sometime around the firm, when he was running down the street, people were like, does Tom Cruise run in every single movie that he's in? And now it's a trademark. And he will either the producers will say it or he says it like, they're not doing a movie without Tom Cruise running like this.
Kim Holderness
With his not. He's in incredible shape.
Ben Holderness
It's not just the running.
Kim Holderness
I do love watching him run, do his own stunts. But there is gonna come a day, right, like when he. He's not gonna run.
Ben Holderness
Then I'll be done with movies.
Kim Holderness
Okay?
Ben Holderness
But until then, until then, like Mission, like Mission Impossible is out right now. The entire time I was driving PC to where he was going this morning was us trying to figure out when we're going to watch that movie in the theaters.
Kim Holderness
Okay.
Ben Holderness
I don't even know if I think he's a good actor, but I know, here's what I do know. I want to watch him on the big screen. I don't want to watch him in my. In my room. Like that Top Gun Maverick movie was the dopest big screen movie experience I have ever had because of the special effects. The fact that like in giant definition, you can see. Yeah, that's not some dude jumping or flying. That's Tom Cruise. Tom Cruise is in that airplane Tom Cruise is landing on. You know, maybe I've gotten a little unhinged here, but yeah, no, well, I'm done with movies as soon as Tom Cruise is okay, that's my answer.
Kim Holderness
Okay.
Ben Holderness
Movie theaters.
Kim Holderness
Movie theaters. No, I still like that they bring me candy and I like that it gets dark and I like. But it is. It was an expensive nap. We did promise an update on our friend Chuck. What have you learned?
Ben Holderness
His name is Chuck Lane.
Kim Holderness
Okay.
Ben Holderness
It was Chuck Lang. Chuck Lane, my friend immediately wrote back. I think he passed away in 2016 or 2017. He was older than us, so, you know, that's what happens. But he was a gloriously wonderful photographer with a great smile. I don't know if I'm going to be able to find a picture of him, but I do think we should end. End with some. With some music and with just some still shots of pictures that Chuck Lane took, some of which were marked out by my daughter because I had a cigarette in my head.
Kim Holderness
And so if you're listening, please enjoy this music as we read the credits.
Ben Holderness
You can do it over the credits.
Kim Holderness
And if you're watching on YouTube, enjoy Chuck Lane Photography.
Ben Holderness
Laugh Lines is written and produced by Kim Holderness and Pen Holderness and Anne Marie Taylor Tapke with original music by Pen Holderness. It is filmed, edited and live produced by Sam Allen and hosted by acast. As always, we'd love to hear from you. Please write to us@podcastholdernessfamily.com or leave a voicemail 323-364-3929.
Kim Holderness
We're going to talk to you soon on the laugh lines. Bye. Love you.
Ben Holderness
Bye Love you Chuck.
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Podcast Summary: Laugh Lines with Kim & Penn Holderness – "Lifesaving Work No One’s Talking About with Dr. David Fajgenbaum"
Episode Overview Lifesaving Work No One’s Talking About features Dr. David Fajgenbaum, a physician, scientist, and co-founder of EveryCure. Dr. Fajgenbaum shares his remarkable personal journey battling the rare and deadly Castleman disease and his pioneering work in repurposing existing drugs to treat various diseases. The episode delves into the innovative use of artificial intelligence (AI) in medical research, particularly in identifying potential treatments for conditions like autism and cancer. Kim and Penn Holderness engage in heartfelt and insightful conversations, blending humor with profound discussions about aging, health, and the impact of scientific advancements.
The episode opens with Kim and Penn Holderness expressing their admiration for Dr. Fajgenbaum's life-saving contributions. They highlight his ability to restore faith in humanity through his dedication and innovative approach to medicine.
Notable Quote:
Ben Holderness: "Shouldn't this be something that organically just explodes into common knowledge? Because it's so amazing." (00:56)
Dr. Fajgenbaum recounts his harrowing battle with Castleman disease during medical school at Penn. Diagnosed in his third year, he faced multiple relapses that brought him perilously close to death five times. Determined to survive, he embarked on a mission to find a cure, ultimately repurposing the drug Sirolimus, originally developed for organ transplant rejection, to manage his condition. This breakthrough led to his sustained remission for over eleven years.
Key Points:
Notable Quote:
Dr. David Fajgenbaum: "It's almost like the uncertainty is almost as beautiful as the ones we know about." (15:58)
Inspired by his personal experience, Dr. Fajgenbaum co-founded EveryCure with the goal of repurposing existing medications to treat a wide array of diseases. The nonprofit leverages AI to analyze vast databases of drugs and diseases, identifying promising drug-disease pairings that may have been overlooked. This approach aims to expedite the availability of treatments for thousands of conditions.
Key Points:
Notable Quote:
Dr. Fajgenbaum: "It’s going to take all of us working together and it's really got to be all hands on deck." (22:55)
A significant portion of the discussion focuses on EveryCure’s research into autism, particularly in nonverbal children. Dr. Fajgenbaum explains that up to 50% of children with autism possess antibodies that block folate from entering the brain, a crucial nutrient for brain development. By using a folate derivative, folinic acid (leucovorin), which can bypass these antibodies, studies have shown improvements in verbal communication among nonverbal children.
Key Points:
Notable Quote:
Dr. Fajgenbaum: "It's a medicine that... helps with verbal communication, helps with how you speak and communicate with the world." (30:23)
Dr. Fajgenbaum discusses the systemic barriers in drug repurposing, primarily the lack of financial incentives for pharmaceutical companies to support treatments for rare or non-profitable conditions. Since many repurposed drugs are inexpensive and off-patent, there is minimal profit potential, discouraging large-scale promotion and awareness campaigns.
Key Points:
Notable Quote:
Dr. Fajgenbaum: "There's no company that's going to help to raise awareness for it." (27:55)
EveryCure employs AI to navigate the vast landscape of possible drug-disease combinations. With approximately 4,000 drugs and 18,000 diseases, the potential pairings reach an astonishing 75 million possibilities. AI helps prioritize the most promising combinations, significantly reducing the time and resources needed for laboratory research and clinical trials.
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Dr. Fajgenbaum: "We utilize AI to help us to find those best options." (23:21)
Highlighting recent advancements, Dr. Fajgenbaum shares the success stories from trials using leucovorin in autistic children. One poignant example is Mason, a child who was nonverbal for three years and began speaking his first words within days of starting the treatment. These developments underscore the potential of repurposed drugs in creating meaningful improvements in communication and quality of life for autistic individuals.
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Dr. Fajgenbaum: "He jumps up and down when his mom says, 'you want more.' He just said more." (25:40)
Towards the end of the episode, Dr. Fajgenbaum emphasizes the urgent need for support in spreading the word about EveryCure’s findings and securing funding for further research. He outlines several ways listeners can contribute, including donating to the nonprofit, sharing information with those who might benefit, and supporting collaborations with healthcare and pharmaceutical industries.
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Dr. Fajgenbaum: "Helping us to spread the word when we find these things... is huge." (32:49)
The conversation intersperses serious discussions with lighthearted banter, showcasing the hosts’ rapport with Dr. Fajgenbaum. They explore personal anecdotes, such as Dr. Fajgenbaum’s inability to ride a bike and the humorous aspects of leveraging AI for non-traditional purposes. These moments add a relatable and human touch to the episode, emphasizing the importance of community and personal connections.
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Dr. Fajgenbaum: "I don't know how to ride a bike... I rode into my neighbor's garage door at five years old." (35:17)
The episode concludes with listener interactions, where Katie from the audience asks for advice for 40-year-old selves. The hosts share heartfelt and practical tips on parenting, financial planning, and maintaining personal relationships. Additionally, they address a community question about the future of movie theaters, blending personal opinions with broader societal observations.
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Penn Holderness: "Let it go when you can. That's when real growth happened." (43:07)
Conclusion This episode of Laugh Lines with Kim & Penn Holderness offers an inspiring narrative of resilience and innovation through Dr. David Fajgenbaum’s extraordinary journey. It highlights the critical role of repurposing existing drugs in advancing medical treatments for rare diseases and autism. By integrating personal stories with scientific discussions, the hosts effectively engage listeners, shedding light on lifesaving work that deserves broader recognition and support.
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