Uplifting Athletes: Scoring Big for Rare Disease Research

A decade ago, Rob Long’s dreams were centered solely on football. He was looking forward to the NFL draft after a successful college career at Syracuse University, but unfortunately, a rare disease took his chances. Rob was diagnosed and successfully treated for anaplastic astrocytoma, a rare form of brain cancer, but he was never able to return to football. Luckily, he focused his passion on something else: raising awareness and supporting research for rare conditions.

As the executive director of Uplifting Athletes, a nonprofit that uplifts rare disease patients, Rob has been able to do just that. Recently, he was able to host the Uplifting Athletes Young Investigator Draft, which mimics the NFL draft to announce which rare disease researchers are the recipients of $140,000 in grants.

Grants for Rare Disease Research

The announcement of these grants was virtual due to the pandemic and held on March 30. Rob Long and other members of Uplifting Athletes released the winners of the money, who will use it to research conditions such as inherited retinal degeneration, DDX3X syndrome, and dyskeratosis congenita.

One winner, Dr. Sarah Shepphard of the Children’s Hospital of Philadelphia (CHOP), will use the money at CHOP’s Center for Applied Genomics to research the lymphatic system. She hopes to create viable therapies for conditions affecting this system, especially considering that 95% of rare diseases do not have an FDA-approved treatment option.

Another grant will go towards Charcot-Marie-Tooth disease research, specifically therapies that interrupt the degeneration of motor neurons. This is very exciting news for patients who do not have a treatment option or feel forgotten when it comes to research and drug development.

Looking Forward

Rob Long and all those involved with Uplifting Athletes know that more has to be done to help rare disease patients, and they’re happy to be part of the solution. They’ve also acknowledged that “rare diseases don’t discriminate” and have been working to encourage and support researchers of color and investigate conditions that primarily impact minorities.

Their work is helping rare disease patients, and you can read more about it here.

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