Inside Perspective on the 2015 Rare Disease Champion Award


Andy Shay is the Director of External Relations at Uplifting Athletes. After spending 21 years as a sportswriter covering high school and college football in Central PA, Andy joined Uplifting Athletes full-time in April 2014.

Through his position producing all content, overseeing all public relations and working to create a greater role in national rare disease advocacy and awareness, Andy runs the annual Rare Disease Champion Award.

This award, which is given to a leader in college football that has realized his or her potential to make a difference in the rare disease community, embodies the spirit of what our national organization is trying to accomplish.

At the close of this year’s campaign, we asked Andy share an insider’s perspective about what stood out to him about each finalist and how proud we are of each and every finalist for their impact in the rare disease community.

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Running the Rare Disease Champion campaign is one of the highlights of my year working for Uplifting Athletes.

Congratulations to Auburn’s Sammie Coates for becoming the seventh winner of the Rare Disease Champion trophy. It will be an honor to recognize him during the Maxwell Awards Gala next month in Atlantic City.

One winner is chosen, but from my chair the highlight of this campaign has always been learning about new rare disease stories of adversity, triumph and inspiration inside of college football.

This year we had six finalists, and each would have been a worthy winner. That’s the real beauty to me – it doesn’t matter who wins because the stories cut so deep by the time voting starts I’ve already been changed.

In sound bite form, here’s what I learned and thought about each of the 2015 Rare Disease Champion finalists and how their stories left an impact on me.

Auburn’s Sammie Coates is genuine. That video ESPN did for College Gameday on his relationship with Kenzie Ray makes me lift my glasses and wipe every time. You would think Sammie is the one having the most impact in this relationship. But I get the feeling it’s the other way around and Kenzie’s personality and fight fuels Coates.

Quinterrius Eatmon from University of South Florida stayed the course through very troubled waters and continued to thrive in the classroom and on the football field despite ridiculous distractions and adversity. As a father and husband he showed the world exactly what kind of man he is.

Friendship matters to Baylor wide receiver Levi Norwood. His relationship with Jacoby Burks was more than most would do. But when challenged to take an action in his final year of eligibility, Norwood valued that friendship enough to take on a lot more work and started a Chapter of Uplifting Athletes at Baylor.

Minnesota’s Dan O’Brien did what every parent would have done when he found out his son was diagnosed with a rare disease. He left everything in the rear view mirror. But O’Brien was strong enough to burn the candle on both ends, continuing to work and being there for his son each and every night during a 100-plus day hospital stay. Only the strongest survive.

UCLA defensive back Marcus Rios’ story is frightening. Doctors can’t figure out what is ailing him, he’s told he could possibly die after they correctly diagnosis him. Then he loses nearly 50 pounds, yet still find the strength to fight back. And he comes back from all that to play the next year? His love of the game humbles me.

Greg Stevens was the underdog. The Eastern Illinois offensive coordinator was the only finalist from an FCS school. He’s very quite and reserved, too. Bottom line is he’s a rare disease survivor who, judging by his runner-up finish, inspired a lot more people than he knows. He can coach my kid in any sport!

This was my second year running this campaign for Uplifting Athletes. Watching the awareness for the rare disease community spike with nearly 38,000 votes through our public online voting process was humbling.

It showed me people care. And the inspirational and moving story will always serve a purpose.

Thanks to each and every person who voted and to all six finalists for sharing their stories.

This campaign is all about bringing another level of awareness to rare diseases and in turn supports our mission to align college football with rare diseases and raise them as a national priority.

Six inspirational stories individually each provide a snapshot, but collectively they tell a much bigger story built on adversity, perseverance and strength.

Together … We Are … Stronger!

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