Boosting Rare Disease Research Through Sports: Rob Long, Executive Director at Uplifting Athletes

Raise the Line

In 2010, our guest, Rob Long, was on the cusp of an NFL career after being a star punter at Syracuse University. But that bright future was sidelined when Rob was diagnosed with a rare and aggressive brain tumor just five days after his final college game. Fortunately, emergency surgery and treatment gave him a second chance. As you’ll learn in this fascinating episode of Raise the Line, a new purpose took the place of his NFL dreams and today he's the executive director of Uplifting Athletes, a nonprofit using sports to raise awareness and resources for rare diseases. One signature program developed under his leadership is the Young Investigator Draft held annually since 2018 at the home stadium of the Philadelphia Eagles. “Our program is modeled after the NFL draft, but instead of drafting the top athletes in the country, we draft and fund the next generation of rare disease researchers,” Long tells host Lindsey Smith. So far, Uplifting Athletes has provided fifty researchers with over one million dollars in grants through this approach. Tune in to learn about other innovative work that has connected hundreds of rare disease patients with professional athletes and provided opportunities for researchers to attend patient & family conferences as our Year of the Zebra focus on rare disorders continues.

Mentioned in this episode:

Uplifting Athletes