More behind the story of the Uplifting Athletes Rare Disease Champion Award


In the beginning we had to search for stories. Now the stories are finding us. What a difference a half-decade makes.

With voting for the 2013 Uplifting Athletes Rare Disease Champion entering the final week, I am reminded of how far this campaign has come in only its fifth year of existence.

Seven finalists, our largest number ever, and each with an inspirational story that has a direct tie to the rare disease community. That’s one of the main reasons I feel this is such a great campaign because we learn of these unheard inspiring stories and share them with our community.

2012 RDC Champion Rex Burkhead from Nebraska with Jack Hoffman and Scott Shirley.

2012 RDC Champion Rex Burkhead from Nebraska with Jack Hoffman and Scott Shirley.

New York Giants and former Boston College linebacker Mark Herzlich was the inspiration for this award. His triumph over Ewing’s sarcoma was very main stream and touched a lot of people.

But there were details to his experience that really weren’t understood publicly. Mark didn’t just have cancer – and that’s the public perception. Mark had a rare disease.

And the inspiration for the Rare Disease Champion came from the fact that Mark accepted the responsibility of helping us educate as many people as possible about the unique challenges of having a rare disease.

As we build on five years of honoring some talented and inspiring individuals in the world of college football that are either affected or touched by a rare disease, I think it’s important that these stories are told in the proper context.

By that I mean it’s important people understand these stories are about the fight against a rare disease. Whether the individual story is known or unknown, it’s important to create a national conversation about something that could, statistically speaking, possibly be an epidemic.

And to me, that’s the beauty of this campaign. It really does marry rare disease and college football. This award has inspired patients with rare diseases and college football leaders to come forward and tell their story in a way that will create hope for those follow the same path after them.

The excitement this campaign has been able to generate we’ve seen grown year after year. And the relationship we develop with the finalists each year is very uplifting.

For example, the second year of the award we saw a quarterback from a Division III school, who had raised nearly $100,000 in memory of his departed friend after he lost his battle with a rare disease, win the award.

Ian Mitchell rallied the alumni from his school to vote him the champion over candidates from much bigger Division I programs. In fact, the other finalists that year started a campaign for him to win because they were all so moved by his story.

One of the other finalists campaigning for Mitchell was Tulsa’s Wilson Holloway.  Eventually Holloway lost his battle with a rare disease and passed away. That helps put in perspective that sometimes the finalists are fighting for more than a trophy. Some of them are fighting for their life, and it reminds me there is still a lot of work for us to do.

Each year we strive to take another step forward in the RDC campaign, and in 2013 I think that step is presenting our trophy at Maxwell Football Club dinner on a big stage under bright lights. We’ve created a partnership with the Maxwell Club that creates a platform for them to tell their story to a new audience, and in turn we gained a platform to tell ours.

Each year I feel this award is helping us not only build a better community, but a stronger team that is fighting against or playing against the same opponent.

TOGETHER … WE ARE … STRONGER!

Scott Shirley

Executive Director

One thought on “More behind the story of the Uplifting Athletes Rare Disease Champion Award

  1. Pingback: 2013 Rare Disease Champion Presentation | upliftingathletes

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