In support of Rare Disease Day on February 28, Uplifting Athletes shares inspirational stories from road in 2013

On the road at Florida State with Uplifting Athletes Executive Director Scott Shirley.

On the road at Florida State with Uplifting Athletes Executive Director Scott Shirley.

Uplifting Athletes supports the rare disease community by using college football as a platform to help and inspire those battling a rare disease with hope.

As a national organization with 20 chapters on college campuses spread throughout the country, travel to support our bigger mission in the rare disease community is part of what we do.

The time on the road interacting with college football players and leaders on their home turf and seeing first-hand what they are doing to support rare diseases is inspiring and motivating.

With Rare Disease Day around the corner on February 1, members of our 2013 staff shared some of their experiences on the road.

Scott Shirley and Becky Mayes went zipped all around the country in 2013 including stops in Arizona, Texas, Nebraska, Florida and New York City, for example. And while each trip has its own successes and challenges, those special ones leave a lasting impression.

These are their stories from the road.

Mayes took a trip our Nebraska Chapter in September for the Huskers’ Pediatric Brain Cancer Game against South Dakota State.

MAYES: The Chapter at Nebraska focuses on and raises research funds for pediatric brain cancer in honor of Jack Hoffman, a now famous 7-year-old, who was diagnosed with a form of pediatric brain cancer just two years ago.

As part of pediatric brain cancer month, Nebraska’s Chapter decided to highlight their cause at the South Dakota State football game – a university where Jack’s parents happen to be graduates.

FB vs SDSU SB19163

Children battling pediatric brain cancer join the Huskers on their Red Carpet Walk before their game on September 21, 2013.

If you’ve never been to a football game at Memorial Stadium in Lincoln, game day there is always special. But September 21 will be a day that I will never forget.

Families from Nebraska and the surrounding areas who have been affected by pediatric brain cancer were all invited as special guests. The Huskers went to the nines making sure these families had a fantastic experience – and making sure they knew they were not in this fight alone.

Before kickoff, Nebraska’s former Chapter President was recognized for being selected to the All-State Good Works Team because his work with Uplifting Athletes. The families present lined the field during the presentation and helped thank him for his work.

Following the presentation was something every Nebraskan looks forward to on game day – the red carpet walk.

Every family had a representative join the Huskers as they walked down the red carpet and onto the field performing a sacred tradition in Nebraska.

During the game, Nebraska featured their Chapter’s efforts on the video board and thanked all of the families in attendance. Rex Burkhead, who won our 2012 Rare Disease Champion award for being the catalyst behind Nebraska’s fight against pediatric brain cancer, sent in a video of support for his alma mater and wished Jack Hoffman a happy birthday since it was coming up in two days.

The student section did not miss a beat and sung “Happy Birthday” to Jack who has since been deemed cancer free.

What touched me the most, though, came before the game. On Saturday morning, I had the opportunity to meet all of the families in attendance and hear their stories.

The stories were heart wrenching. One family’s son had passed away just two weeks prior. Another family had lost their son a year before.

Pediatric brain cancer is deadly. It is not a diagnosis you would ever want to receive. And unfortunately for many, it is a death sentence.

But these families were not filled with sorrow – they were full of hope.

There were tens of thousands of people with them that day, standing beside them, supporting them through the battle and 100 men on the field fighting for more than a victory over South Dakota State.

Spending time with these amazing people made me realize even more what an impact these Chapters have on so many lives. Together, we have been able to give the 30 million Americans currently battling a rare disease, and their families, support and the knowledge that they are not fighting alone – there is an army behind them.

Shirley is the Executive Director of Uplifting Athletes, and has spent more time interacting with members of the expanded Uplifting Athletes family than anyone.

SHIRLEY: Every trip is memorable for different reasons. There are many moments that are probably “Reality TV” worthy like when I decided to save money on a hotel in Waco, Texas by staying up to celebrate a big win with my good friends at Baylor and drove straight to airport in Dallas, about 3 hours away.

About halfway to Dallas I realized that was a bad idea and slept in my rental car at a gas station from 3 a.m.-4 a.m. … then raced to the airport to catch the first flight to Philadelphia only to learn that you cannot fly standby more than 6 hours before your scheduled departure.

The trip that stands out the most, though, was the visit to Tallahassee, Florida

Florida State was my favorite team as a kid and I was recruited there in high school.  Even though I am a proud Nittany Lion today, there is still something I enjoy about the Seminoles’ brand.

What made this trip unique was that those two often conflicting sentiments seemed to finally align when a Penn State transfer, Kevin Haplea, successfully started a chapter of Uplifting Athletes at Florida State.

Kevin’s experience with Uplifting Athletes at Penn State laid the groundwork for his new teammates to rally around Coach Jimbo Fisher’s youngest son Ethan, who is battling Fanconi anemia.

What I did not expect was how well versed his coaches and administrators were with our program.  Shortly after I arrived on campus (after driving up from a visit in Miami) I realized that they were treating me like a recruit rather than the other way around.

Kevin introduced me to their strength coach, compliance officer (who knew all about us from his time at Maryland), sports information director, athletic trainer, coaches and teammates.

I even got to meet with Coach Fisher, his wife Candi and their son Ethan (see photo above), two hours before kickoff in his office. They even allowed me to join the team for lunch and gave me a baseball cap.

During pregame, I was able to visit with our chapter leaders from North Carolina State and introduce them to Kevin. Then the Seminoles’ mascot rode out on his horse with the flaming spear and handed it legendary Florida State coach Bobby Bowden to stake in the ground.

Watching the game from the sidelines gave me a chance to meet many of the players that were excited about getting involved with Uplifting Athletes.

Overall it was the great introduction to a group of players who realized the position they were in to make a difference in the lives of rare disease patients.

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