Someone living with a rare disease can feel a bit invisible. But if you play college football in the United States, the opposite is true. Players, especially standouts destined for the NFL, garner a lot of attention.
Thanks to the nonprofit group, Uplifting Athletes, college football teams are using their celebrity to raise awareness about rare diseases, of which there are an estimated 7,000 affecting 300 million to 400 million people in the world. A few players have shared their own stories of coping with rare conditions and teams take part in events, including weight lifting contests, that spread the word about rare diseases and raise funds for Uplifting Athletes.
Forging a personal connection, the Notre Dame football team invited 80 rare disease patients and their families to a bowling party. Watch the video to learn more.
This Saturday at Lincoln Financial Field in Philadelphia, Uplifting Athletes will award grants to young scientists researching rare diseases. The Young Investigator Draft – presented by biotech leader CSL Behring – is fashioned after the NFL Draft and in two years has awarded $180,000 to scientists trying to unlock the mysteries of rare conditions.
Dr. Aimee Layton of Columbia University was among the first recipients and has already scored a success with an app that helps cystic fibrosis patients. The app, currently part of a research study, has been remarkably effective in getting patients to adhere to an exercise program. That’s difficult for anyone and has additional challenges for people who live with CF, a rare condition that affects breathing.
Rob Long, Executive Director of Uplifting Athletes, wasn’t planning on being a rare disease advocate. An All-American punter for Syracuse University, Long thought he would play in the NFL but his football career ended after he was diagnosed with anaplastic astrocytoma, a rare brain cancer. He recovered and launched an organization with 20+ college chapters across the United States and a dream to provide meaningful funding to rare disease research.
“CSL Behring is proud to continue sponsoring this innovative program that supports emerging science and rare disease research,” said Kevin Kovaleski, CSL Behring’s Vice President for Global Commercial Development, Transplant. “The Young Investigator Draft reinforces our promise to patients by empowering researchers to focus on the rare disease community.”
Learn more about Long and Uplifting Athletes by listening to this World of Promise podcast.
Watch three college teams lift weights for a good cause: