Uplifting Athletes

From competing as an elite athlete to becoming Executive Director of Uplifting Athletes, Rob Long has had an incredible journey, granting him insight into rare diseases and their treatments. As captain for the Syracuse University football team, it looked like Rob would be drafted into the National Football League (NFL) until he was diagnosed with a rare form of brain cancer just five days after his final collegiate game.

Twelve years ago, when Rob was playing football, people were beginning to understand the importance of sleep for recovery. Rob soon found that sleep is important for recovery in all aspects of health. At age 22, Rob was diagnosed with anaplastic astrocytoma, a rare form of brain cancer. Hopes of joining the NFL were replaced by hopes to live another day. In Rob’s honor, his teammates opened a chapter of Uplifting Athletes at Syracuse University, which introduced him to the organization.

 Naturally, elite athletes are in the spotlight. Uplifting Athlete’s uses this spotlight to shine awareness on rare diseases and raise funding for rare disease research. There are over 10,000 rare diseases, 95% of which have no treatment available. Uplifting Athletes aims to change that. By funding young researchers, Uplifting Athletes plants the seeds for future treatment.

Rob was hired as Executive Director of Uplifting Athletes in 2016, and by 2018 he had devised a new and fun way to push research for rare diseases forward: the Young Investigator Draft. Held in the Philadelphia Eagles stadium, crowds gather to cheer on drafted researchers, who receive a jersey with their name on the back, as well as a check to fund rare disease research.

Each researcher partners with a patient advocacy group. This allows researchers to know what is important to rare disease patients and puts a face to the work. The hope is the researcher will use the funding they receive to begin research and then apply for larger grants to continue working towards a treatment.