Dr. David Fajgenbaum: Rare Disease Patient, Researcher, Advocate, and Leader

Dr. David Fajgenbaum, MD, MBA, MSc is an immunologist, professor, speaker, and national bestselling author. He is one of the youngest individuals ever appointed to the faculty at Penn Medicine, and has been recognized for his work on an international scale by the likes of The New York Times, Good Morning America, CNN, the Today Show, Forbes 30 Under 30, among others.

Dr. Fajgenbaum is an icon in the rare disease community but before he became a widely-recognized leader in the rare disease community, Dr. Fajgenbaum was a patient first.

The former Division I college football quarterback was diagnosed with Castleman disease more than a dozen years ago and has battled the disease for years. Since his diagnosis, Dr. Fajgenbaum has had his last rites read, and had four deadly iMCD relapses, but currently is in his longest remission ever thanks to a repurposed treatment that he identified. 

“I can’t help but think back of the trajectory of the last 12 years. When I was diagnosed, patients were not even considered part of the process. We were supposed to raise money and sit back,” said Dr. Fajgenbaum. He continues to support the rare disease community with a ‘patient-first’ mentality.

“Patients are now the ones who are relentless about driving the science. The therapeutics are catching up, and we are moving so fast in the lab. I would like to see existing medicine utilized to find more treatments. I think we are getting closer to the world I dream of.”

Dr. Fajgenbaun has also had a profound impact on Uplifting Athletes where he has continued to provide invaluable counsel when it comes to identifying how to best celebrate and elevate research inside the rare disease community.

A visionary who is the Co-Founder/President of the Castleman Disease Collaborative Network, Founding Director of the Center for Cytokine Storm Treatment & Laboratory, Associate Director, Patient Impact of the Penn Orphan Disease Center, Co-Founder of Every Cure, and national bestselling author of Chasing My Cure, Dr. Fajgenbaum saw the vision of the Uplifting Athletes Young Investigator Draft and the value of celebrating and funding emerging researchers.

A member of the first Young Investigator Draft class himself, Dr. Fajgenbaum continues to be a voice for the event by serving as the medical draft analyst for each individual selected.

“Uplifting Athletes is uniquely positioned to bring all these people together and no other organizations can do that,” he said. “Rob (Long) and Brett (Brackett) are former athletes and the teamwork aspect they bring to the table is making a difference. You don’t want me, the former quarterback, blocking for anybody. I would be so bad. In football you want good on good.

Research is the same thing. Rare diseases are horrible and difficult and you have to fill every gap. Patient advocacy organizations bring a level of relentlessness that is unmatched. With researchers nobody is going to bring more knowledge forward. If you are missing a piece you are not going to be successful. But you need somebody to bring that all together. And that’s where I see Uplifting Athletes having such a great impact.”

The road with so many known rare diseases is still difficult and treacherous to navigate today, but the impact and growth over the last 40 years has shown progress unlike any other era, and that has created what David sees as a unique opportunity moving forward.

“Time is so valuable when it comes to rare diseases. Whether you are a researcher, advocate, patient, loved one, doctor, or just a person with a passion for helping others, you can make so much impact with your time,” David said. “For young people looking at rare diseases, there is a lot of low hanging fruit today and you can have a direct impact on people’s lives. We do this work not to publish papers and advance a career. This is about helping more people and making an impact. To me it seems like a no-brainer.”

If you’re a researcher and interested in learning more about the rare community or connecting with a patient community at an upcoming conference, check out the Uplifting Athletes Researcher Travel Program.