Uplifting Athletes’ Playbook to Fund Rare Disease Research

Executive Director Rob Long discusses CSL Behring-sponsored Young Investigator Draft.

Rob Long speaking at Uplifting Athletes Young Investigator Draft - photo courtesy of Uplifting Athletes
Uplifting Athletes Executive Director Rob Long speaking at the organization's Young Investigator Draft sponsored by CSL Behring (Photo courtesy of Uplifting Athletes)

Rob Long often tells audiences that he has the job of his dreams. As the Executive Director of Uplifting Athletes, he leads a non-profit organization comprised of college football players across the U.S. that uses the passion of the sport to raise awareness and funding for rare disease research.

As rewarding as leading such an organization can be, Long saw himself pursuing a different career while attending Syracuse University, where he was an all-American punter. His hopes for a spot on a National Football League roster were derailed shortly after the final game of his senior year, when he was diagnosed with a rare brain cancer. After undergoing surgery and treatment, Long has been cancer-free since 2011.

The experience led Long to shift his life goals. Now, he’s taking the same drive and dedication he once applied to football to the battle against rare diseases like the one that nearly took his life. In early March, Uplifting Athletes held its second annual Young Investigator Draft presented by CSL Behring, which draws on the non-profit’s football theme by awarding grant funding to emerging rare disease researchers in the style of the NFL Draft.

Vita sat down with Long to discuss the event and his vision for Uplifting Athletes’ future.

Vita: Uplifting Athletes’ Young Investigator Draft has awarded some $200,000 for rare disease research in less than a year. The bulk of these grants are going to emerging researchers. Why did you decide to focus specifically on up and coming investigators working in rare diseases?

Rob Long: The best opportunity the advocacy organizations that we partner with to select grant funding recipients is to find emerging, smart researcher that's willing to dedicate their time and to make it their career to focus on a specific disease. These brilliant minds that are just coming into the rare disease field so it’s important to find ways to support and celebrate them. These are the people who are going to be around doing this research in the next 10, 20, 30 years and behind treatments and hopefully cures.

VitaUplifting Athletes started out partnering with individual college football teams to create chapters and raise money that way. Now, you’re also partnering with biotechnology leaders like CSL Behring. Why is it important to have the support of biotech to move Uplifting Athletes forward?

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Rob Long: In order for us to take the next big step as an organization, we needed to find an additional new revenue stream to continue to provide the support to rare disease patients that we envisioned. And we have been able to through our partnerships with industry on events like the Young Investigator Draft. Industry partners are the ones that are allowing us to fund the research that we're funding. They’re allowing us to take the time and effort to focus on our mission to help people with rare diseases.

Vita: You have been with Uplifting Athletes for several years and recently took over as Executive Director. What is your vision for the future of the organization?

Rob Long: The sky's the limit for the organization long term. I think we provide a great service to the rare disease community in raising awareness. The Young Investigator Draft is the start of something really special where we're celebrating and recognizing researchers in a completely different way. I think we would like to expand not only vertically within football, but horizontally with other sports. By branching out we can give more of a reach to the platform that athletes have for the rare disease community.