When This Philly Friend Heard "There's No Hope," He Created Hope & So Much More.

I had the most fun time meeting up this week with one of my coolest friends and fellow rare disease rockstar advocate,?David Fajgenbaum, MD, MBA, MSc ?. It was a special meeting because not only do we share a passion for rare diseases, but?we also share a hometown: Philadelphia -?and we rarely get to see each other "back home!"

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Philly is known for its grit, and that's precisely the kind of determination we bring to our work for the rare disease community. David takes grit to a whole 'nother level. His story is nothing short of remarkable and speaks volumes about the power of?resilience and innovation.

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Both of us being from Philly, we've got that fighting spirit in our DNA. David's journey began with a diagnosis of Castleman's disease, and at one point, doctors told him that there was no hope, that they had exhausted all options.?But David refused to accept that fate. He decided to try one more thing, and it saved his life.?His determination led to the creation of the Castleman Collaborative Network, with the mission to save thousands of lives affected by this disease.

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And now,?David is harnessing the power of #AI through his new organization,?Every Cure , to potentially save countless more lives by repurposing drugs for various diseases. It's nothing short of revolutionary, and it's taking the rare disease and life sciences world by storm.

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David is not just a remarkable advocate; he's also the author of the New York Times bestseller, "Chasing My Cure." In his recent keynote speech at the?Life Sciences Pennsylvania ?conference, he humbly remarked, "I should have called it 'Chasing Our Cure.'" David's humility, kindness, and zest for life are truly inspiring. The rare disease community is blessed to have him as a champion.

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What's super cool, though, is that?David has met former presidents, top thought leaders, and CEOs in this country,?yet when I saw him at the conference this week, he gave me the same energy and smile he gives the big rockstars. He does that with everyone he knows. He is that cool.

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One of the lessons I've learned from David's book is that?when life doesn't offer silver linings, sometimes, we need to create them. I find myself returning to this perspective in many of my own challenges.

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If you're interested in hearing more about David's incredible journey?and his formula for resilience no matter what curve balls life throws, I had the privilege of interviewing him on my podcast. You can listen to our conversation here:?Brilliantly Resilient Podcast Interview with David Fajgenbaum.

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Let's celebrate David and let his story inspire you to be a rockstar in your own journey. Use grit to go after your goals and dreams too.?Together, we can continue to inspire and uplift each other.

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Kristin Smedley is Co-Founder and CEO of the only patient organization in the world for people living with the blindness her two sons are affected by, CRB1 LCA/RP. The?Curing Retinal Blindness Foundation ?has raised over 4 million dollars and achieved a National Rare Eye Disease Awareness Day.? That legislation, H.R. #625, was the first in US history to be submitted in Braille and it advocates for better resources for blind and visually impaired Americans.

Kristin is author of the bestselling book?Thriving Blind: Stories of Real People Succeeding Without Sight ?and a new children’s book,?What I Can Be Is Up To Me .

Kristin co-founded?ThrivingBlindAcademy.org ?to solve the employment, literacy, and financial crisis in the blind community.? She is Co-Creator of the short film,?The Greatest Equalizer, ?that addresses the unemployment crisis of the blind.