Every Cure

At 25, David Fajgenbaum, MD, MBA, MSc was told he was dying. But then he had an idea: What if there were drugs out there—ones already approved for use for other diseases—that could treat him? From his hospital bed after being read his last rites, David discovered the drug that saved his life: a treatment that was already on the market, available for doctors to prescribe, just not for his disease. Now, he's launched Every Cure to leverage AI and find new treatments and solutions from existing drugs to save others. I hope you find Aria and my conversation with David as inspiring as we did.  Everyone should know about the work he’s doing. People need to see the hope in AI. It can be, quite literally, life-changing.

“Her little body was trembling so hard I could feel it through my arms. I tried to hold her still, whispering, “You’re okay, baby,” but I was crying too. Katie was only 18 months old when we first started noticing symptoms. At that age, she should have been learning to run, to play, to chase after her big brother. Instead, she was in and out of hospitals. Three major surgeries. Dozens of scans. So many hospitalizations I lost count. And still, no one knew what was wrong. We were fighting in the dark. Then one day, a doctor finally spoke the words I’ll never forget: Castleman disease. For years, we tried everything we could. Steroids. Targeted chemo. Each time hoping, praying, maybe this one would work. It felt like we were experimenting in the dark, like our little girl was a guinea pig in a world that didn’t yet know how to help her. I remember the moment when the doctors said they were out of options. There’s no way to describe that kind of fear — watching your child struggling and realizing medicine has no more answers. But then came a glimmer of hope. We connected with Dr. David Fajgenbaum and his team at the CDCN. He’d battled Castleman disease himself and survived. He suggested a drug called sirolimus, the same one that had saved his life. And somehow… it started to help Katie’s too. Today, Katie’s in middle school. She’s an incredible dancer and she’s thriving. Dance has become her outlet, her joy, and her strength. She dances not just because she loves it, but because she can — because her body that once failed her now lets her express every ounce of her courage and resilience through movement. Katie has been fighting this disease since before she could speak. But she’s fluent now in courage, in grace, in medical routines most adults couldn’t handle. She’s the strongest person I know not just because she survived, but because she’s thriving, leading with joy, inspiring others. She’s living proof that even the smallest warriors can grow into the fiercest lights.” - Mileva Repasky, the incredibly strong mother of Katie and a leader of Castleman Disease Collaborative Network for more than a decade

During my TED talk I imagined I was talking to my mom who I haven’t seen her in 20 years since she passed away from cancer. I promised her I’d dedicate my life to finding treatments for patients like her. And this TED Talk was my way of telling her what I’ve been working on all these years. Every second I spoke, I thought about the patients all over the world who could benefit from the awareness this talk might spark. It was nerve-wracking but so worth it. If you haven’t seen it yet, I hope you’ll take a few minutes to watch by clicking the link below. https://lnkd.in/evWHPTHe #doctor #medicine #tedtalk

Hope alone won’t save lives. But hope with action just might. I had a great time sitting down with Celina de Sola, Co-founder and President of Glasswing International to discuss how to turn setbacks into motivation as a part of TED Conferences Intersections Series. Click the link to watch our full conversation! https://lnkd.in/eAfk3Pr8 #setbacks #motivation #doctor

“One month I won the state championship in track. The next, I was lying in a hospital bed unable to eat, walk, or even get out of bed on my own. It started with stomach pain so sharp I had to be rushed to the ER. I thought maybe it was something simple—appendix, food poisoning, something they could fix. But after they did a surgery, the pain didn’t stop. My body was on fire, my belly filled with fluid, my organs started shutting down. The doctors weren’t sure what was happening. They ruled out cancer, but nothing made sense. Weeks went by, and I grew weaker. My muscles wasted away. I couldn’t feed myself. I couldn’t stand. For a 15-year-old who lived for football, basketball, and track, it felt like my life had ended. I also knew the my life could actually end at any time. My mom was amazing. Even with everything going on, she was constantly there for me. Finally, after a few months, they thought it might be Castleman disease — it was so rare that none of my doctors had ever seen it before. They had heard about Dr Fajgenbaum’s work and got in touch with him right away. Hearing the word “rare” scared me more than anything. Would I survive? Would I ever get back to school? Would I ever feel like myself again? Dr Fajgenbaum’s recommended a treatment that he and the CDCN had helped to get approved for Castleman’s. I’ll never forget the feeling when it started to work. Little by little, I pushed myself. I got out of bed. I walked. I fought to catch up in school. By the time I returned, I’d already fully caught up on my math course on my own. Sports gave me discipline, but Castleman gave me perspective. I learned I was more than an athlete. I became someone others could look up to. A leader, even when no one was watching. Today, I’m a freshman at Concordia University in St. Paul, majoring in communications with a minor in marketing and sports management. Someday, I want to open a gym for student athletes who’ve been knocked down like I was—because I know what it feels like to lose everything and fight your way back.” - Avion Dent Every Cure Castleman Disease Collaborative Network #doctor #medicine #raredisease #drugrepurposing

The moment my life changed forever was when I realized that hope alone wouldn’t save my life. If I wanted a chance to survive, I needed to turn that hope into action. Today our TED talk goes live on Youtube that could help us save more patients. You can click the link below to watch the talk: https://lnkd.in/edQzCwWR Please watch, like, repost, and share the talk as far and wide as you can to help us on our mission to save and improve lives by repurposing drugs! #doctor #medicine #tedtalk

“For years, my son couldn’t tell me he loved me. He couldn’t share any feelings or statements with me. He could only repeat back the words I said to him. Every night, we stayed up late searching the internet, desperate for anything that might give our son a voice. That’s when we kept seeing the same name: Dr. Richard Frye. And a test called the folate receptor autoantibody test. We thought, maybe this is it. It wasn’t easy. It took months just to find a doctor willing to order the test. But finally, he got the test and it came back positive, meaning he had something called cerebral folate deficiency which can sometimes co-occur with autism spectrum disorder. When Junior finally started treatment with leucovorin to address the cerebral folate deficiency, we had no idea what to expect. Within weeks, he began to share his thoughts and then one day, out of nowhere, he looked up at me and said: “All right, bye Dad, I love you.” Unprompted. Clear as day. That moment was everything. After years of searching, fighting, and hoping—we finally had a breakthrough. A treatment that gave our son his voice .  A chance to hear him say he loved us.” - Ryan Baldridge, father of “Junior” who I shared about in my TED talk I felt so compelled to share this story of how cerebral folate deficiency could be responsible for Ryan’s speech challenges and how this simple vitamin derivative, leucovorin, could help to address it. This is why we started Every Cure. To advance treatments like this to patients who can benefit from them.