A Thursday night in March at a small hotel in rural Pennsylvania had the feel of a fall Friday night campus pep rally. Hundreds of fans packed a room eagerly awaiting a rare speech by James Franklin, the high-profile, high-energy head football coach of the local favorite Penn State Nittany Lions.
Rob Long stood quietly at the back of the room. If he hadn’t been diagnosed with a rare disease as a senior at Syracuse in 2010, the former all-conference punter might have been the football star speaking to this crowd, recalling college memories and sharing stories from the National Football League.
But life’s twists brought him to this room anyway. Instead of playing pro football, he’s an executive with Uplifting Athletes, a rare disease-focused charity run by college football players on more than 20 campuses across the country. The event was a fundraiser for the organization.
“I would not change anything that I’ve been through as awful as it was at times,” he said. “It kind of took away my dream of playing in the NFL, but it provided me another unbelievable opportunity that I wouldn’t have had if I hadn’t gone through it.”
A four-year starter at Syracuse, Long’s career with the Orange came to an abrupt end in 2010 five days after the final game of the regular season. An MRI test prompted by chronic headaches found a tumor was taking up a quarter of his brain. The diagnosis was anaplastic astrocytoma, a rare and aggressive brain cancer with a grim prognosis. Doctors told Long, then 22, that he wouldn’t see his 25th birthday.
The devastating diagnosis was a source of inspiration for Long’s teammates, who eventually established an Uplifting Athletes chapter at Syracuse in Long’s honor, dedicated to raising money and awareness for rare disease research.
Hope from Tragedy
Uplifting Athletes spread to Syracuse from Penn State, where the charity grew out of a fundraising idea hatched by former Nittany Lions football player Scott Shirley.
Months after his father was diagnosed with a rare kidney cancer in 2002, Shirley created Lift for Life, a fundraising effort in which Shirley’s teammates lifted weights for pledges. His father died in 2005, but the excitement and support generated by Lift for Life, now an annual event, spurred Shirley in 2007 to create a non-profit comprised of student-athletes and focused on rare diseases.
“What I learned from my experience with my dad is that we as college football players are in a position to inspire people with hope,” he said. “So we try to focus the things that we do on the things that we’re uniquely positioned to do.”
Uplifting Athletes founder Scott Shirley
There’s also a benefit for players in redirecting some of the massive attention that big time college football receives toward causes like rare disease research, says Franklin.
“The reality is, you leave these (events) and not only has it made a positive impact on them, but it’s changed you.”
In an exclusive interview with Vita, Franklin, who has had Penn State ranked as one of the final top 10 teams in American college football’s top tier over the past two seasons, said it’s important for his players to make time in a busy schedule packed with classes, workouts and practice to give back.
“I truly believe that our student-athletes, having to balance all of these responsibilities, and showing that they’re still willing to take on other responsibilities in helping others is why our guys are going to go on and be great fathers and be great husbands and other leaders in the community,” he said.
Jason Cabinda, a captain on Franklin’s team last year and a co-president of its Uplifting Athletes chapter, led by example last month at the NFL Scouting Combine. by taking part in the non-profit’s “Reps for Rare Diseases” campaign. With a potential pro football future on the line, Cabinda was one of several players who raised thousands of dollars by asking fans to pledge money based on their performance in front of NFL scouts.
“Not a lot of the main funding to find cures goes to (rare diseases),” he said in a phone interview. “I felt like it was something I had to join.”
Another former Lion, Jordan Hill, who won a Super Bowl with the Seattle Seahawks in 2015, credits his involvement with Uplifting Athletes as an undergrad in part for inspiring his own charity, which is focused on diabetes and kidney disease.
“Seeing what Scott and Uplifting Athletes have done, it just gives me the green light to do these type of things,” he said.
A New Dream
When he learned of his rare disease diagnosis more than seven years ago, Rob Long was an NFL hopeful. Now, he has a different mission: inspiring hope and research so that others may one day be able to tackle their rare disease as well.
After undergoing surgery and treatment, Long has been cancer-free since 2011. He explored the possibility of a pro football career, but decided he may be able to have a bigger impact off the field and joined Uplifting Athletes as its Director of Strategic Development in 2016. Since then, he has traveled the country sharing his rare disease story. Recent stops included a Rare Disease Day conference at the National Institutes of Health and a rare disease symposium at the University of Notre Dame.
“Once I got to talk and hear the stories of other rare disease patients, our stories were so similar in that when you’re diagnosed you’re told there’s no cure and there are very limited treatment options,” he said. “It can take time to find a diagnosis and understand what it is.”
It’s a common battle not only in the rare disease community, but also in Long’s family, which has a long history of cancer.
After spending years measuring success in the distance he could kick a football, Long looks for victories by working with Uplifting Athletes to raise awareness of rare diseases and funding for research.
“I do what I do not because of me but because of my family and, hopefully, my future family, to make an impact and find some answers.”
CSL Behring and Penn State University announced a $5 million gift last year to create a multidisciplinary Center of Excellence in Biotechnology.