PA Rare Disease Leader Profile: Rob Long of Uplifting Athletes Inc.

This is the third in a series of profiles of the leaders of rare disease organizations based in Pennsylvania.

Mission of the Organization: To inspire the rare disease community with hope through the power of sport.

Rare Disease(s) Covered by the Organization: We are an umbrella organization representing the over 7,000 different rare diseases.

Your Role at the Organization: Executive Director who wears many different hats.

How You Got Involved with the Organization: Back in December of 2010 while playing football at Syracuse University, I was diagnosed with a rare and aggressive form of brain cancer. My teammate rallied in support of me and started the Syracuse Chapter of Uplifting Athletes in 2012. Ever since then I remained actively involved in the organization until I had the opportunity to join as a full time employee in 2016.

What You Are Most Proud of or What You Are Excited About Doing Next: What I am most proud of is the development of the Young Investigator Draft. In just the first four years of the program, we have funded 24 different researchers and provided over $440,000 in rare disease research grants. I understand that when I was diagnosed there was no cure for my disease however, there was a therapy that I could try that gave me hope. What I believe we will be able to accomplish through the Young Investigator Draft is to uplift and inspire the researchers who will be the ones that develop the next generation of treatments and cures for rare disease patients to have more time with their loved ones. My hope is to take the gift of time that has been provided to me and pay it forward.

What You Find Most Rewarding in Your Role: The ability to play a role in supporting research and bringing awareness to the rare disease community is amazing. The rare disease community has some of the most inspirational people that dedicate their lives to driving progress. To have the ability to interact with those people on a regular basis makes me feel incredibly lucky.

What You Find Most Challenging in Your Role: I want to be able to help more people and have a bigger impact. I know we will get there in time but there are so many patients and families that have been waiting too long just for a diagnosis let alone a treatment or cure. That is what drives me to keep pushing forward.

Resources You Recommend to Other Rare Disease Advocates: National Organization for Rare Disorders (NORD), Global Genes, Our Odyssey, and EveryLife Foundation for Rare Diseases are other umbrella organizations doing incredible work in the rare disease community. Each plays a little bit of a different role but all are so incredibly valuable to the community. No one umbrella organization or patient advocacy organization is going to solve all of the problems or be able to fulfill all of the needs of the rare disease community so we must work together to move the collective community forward. A lot of the struggles that we face daily have been felt or experienced by many others and I believe those organizations do a tremendous job of providing the resources so that we do not need to repeat our mistakes.

Any Advice You’d Like to Share with the Rare Disease Community in PA: Not so much advice as a thank you to all of those that are working to make progress here in Pennsylvania. There is only so much that can be done at a federal level and real progress will be driven state-by-state through hard-working, well-educated, passionate advocates. One day at a time we will get where we aspire to be.

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