Uplifting Athletes: Raising Awareness, Patients’ Spirits and Funds for Research

Together We Are Stronger

05.20.13 | By Stephanie Fischer

Uplifting Athletes is a nonprofit organization that works with college football players to raise awareness of rare disease, raise funds for research and support individual rare disease patients.  The chapters are run by student athletes at universities across the country.  Their work recently gained national attention when the 2012 Rare Disease Champion visited the White House with the pediatric brain cancer patient who inspired the formation of an Uplifting Athletes chapter at Nebraska University.

I invited Scott Shirley, Executive Director of Uplifting Athletes, to tell us more about their mission and work.

SF: I’m from Philadelphia, so I have to admit that I was pleased to read that Uplifting Athletes got its start at Penn State. Can you tell us more about the history of your organization?

SS: My teammates and I started what would become the original chapter of Uplifting Athletes at Penn State when my father was diagnosed with renal cell carcinoma and we learned it was classified as a rare disease.  In a memorable conversation late one night with Damone Jones (also from Philadelphia), I expressed my frustration with the lack of interest in the cause and he simply shrugged his shoulders while suggesting that we could share the spotlight we had as college football players.  Three short months later we held the first "Lift For Life" event as a way to attract fans and media to share our story about the need to fund research.  The response was overwhelming, proving our ability to mobilize fans and inspire patients.  We realized that our team benefited from the life skills associated with the experience, too.

SF: What is the mission, and how do the chapters work to accomplish it?

SS: After the successful launch at Penn State, Damone, Dave Costlow (the other founder) and I all graduated and took "real world" jobs.  I moved to Washington, DC to work as an engineer.  We transitioned the leadership of the chapter to the next generation of players at Penn State and mentored them as it continued to grow. 

A few years later, we developed a vision of a nationwide program creating the same benefits for student-athletes that we experienced while benefiting a rare disease that's had a direct impact on them.  We developed a mission of aligning college football with rare diseases and raising them as a national priority through advocacy, education, outreach and research.  Uplifting Athletes works with players at each chapter to develop a custom business plan based on their unique assets and abilities.

SF: Can you tell us about some of your programs to raise money for research, increase awareness of rare diseases and support individual rare disease patients?

SS: The "Lift For Life" has become the signature event for most of our chapters.  It is a fun-to-watch strength and conditioning competition featuring exercises ranging from bench press to a giant tire flip and a tug-a-war.  Other campaigns include wearing special colors wristbands or shoe laces during games and a 7,000 push-up challenge for fans on Global Rare Disease Day.  It really all depends on what they think will work best with their fan base and their community.  They are typically football themed and intended to attract fans and media.

The Nebraska chapter actually designed a play during their spring game that featured a 7-year-old pediatric brain cancer patient running 69 yards for a touchdown. He was the inspiration for their chapter a year ago and has now inspired the nation to prioritize his rare disease.  President Obama even invited him to the White House last month.

SF: Can you explain how Uplifting Athletes provides leadership opportunities to student athletes, in addition to benefitting current and future rare disease patients?

SS: One of the aspects that I love about the program is that we are working with people in a position of social influence during their formidable years.  The life skills they learn through their participation in a chapter will go with them into their chosen careers.  Starting and running a chapter of Uplifting Athletes is very similar to starting and running any small business.  The direct benefits to the players who volunteer include the development of professional job skills, leadership development, team building and obviously community service. The personal relationships the athletes develop with patients are often life-changing for everyone involved.

SF: How can people get involved with Uplifting Athletes?

SS: Everyone is invited to take action against rare diseases.  You can visit our website to learn about different opportunities we have to help raise money and spread the word.  Options range from something as simple as promoting our efforts in your email signature to participating in a Team UA fundraising event in your local community.  And if you are a college football player or coach, we would love to hear from you to discuss starting a chapter or an affiliate program this fall!

SF: Thanks, Scott.  As a rare disease patient, I appreciate the efforts of every student athlete who works with Uplifting Athletes to raise awareness and funding for research, as well as how many of the teams adopt a rare disease patient.  

 

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