The History of our Rare Disease Champion Award

Voting for the 2014 Rare Disease Champion is off and running, and it serves as a great reminder of how far this campaign has come in only its sixth year of existence.

Each our five finalists owns an inspirational story that has a direct tie to the rare disease community. One of the great benefits of this campaign is we learn of these unheard inspiring stories and share them with our community.


Current New York Giants and former Boston College linebacker Mark Herzlich was the inspiration for this award. His triumph over Ewing’s sarcoma was well known, well documented 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 six years of honoring some talented and inspiring individuals in the world of college football that are either affected or touched by a rare disease, it’s still vital that these stories are told in the proper context.

By that we mean it’s important the public 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.

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 in five short years has been inspirational. And the relationships we’ve develop with the finalists each year is very uplifting.

For example, the second year of the campaign 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 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!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s