There was a time when Lift for Life co-founder Scott Shirley was, as he says, an idealist, not a realist.
It was 2002. Shirley was 22 years old and entering his senior season as a member of the Penn State football team. School, practice, eat, study, sleep. It was standard.
Until one day, it wasn’t.
“On the way home from practice one day, I got a call from my mom that my dad had been diagnosed with kidney cancer and had six months to live,” he said.
The rest of that fall, Shirley and his parents went to medical center after medical center, almost on a weekly basis, trying to find an answer, a treatment, anything.
“Pretty much every doctor that we went to told us that nothing could be done,” he said. Shirley in particular remembers a doctor in spring 2003 who was the top oncologist at one of the top institutions in America. He didn’t even close the door to the waiting room when speaking to Shirley’s family.
“He basically just stuck his head in and said, ‘The reality is, you need to go home and enjoy the time you have left.’ ”
Shirley’s dad, Don, was a high school baseball coach who led a healthy lifestyle. He was a man of faith.
“In my mind, that is the kind of guy who beats cancer,” he said. “That was going to be his legacy. And I didn’t want to accept ‘No’ for an answer.”
He was, as he admitted, an idealist.
“There’s an innocence that comes with being 22,” he said.
He called the American Cancer Society and learned for the first time that different cancers are really different diseases. They have different treatment protocols — and kidney cancer wasn’t considered one of their priorities, as it didn’t respond to chemotherapy or radiation in the same way other cancers did.
Shirley confirmed this with the Kidney Cancer Association. The bigger concern, they said, was that there weren’t enough patients who can wait long enough for treatment, since the mortality rate was so high. Shirley was told that patients had a 10 percent chance of a five-year survival.
Not enough patients to pay for treatment translated to a lack of interest from pharmaceutical companies to research new treatment. Where was the profit for them?
How it all began
Shirley said he walked into his apartment that night, and his roommate, Damone Jones, asked him how his day was.
“You know what, man? It sucked,” he replied. “Forty-five thousand Americans are diagnosed with this disease every year and I’m told there’s nothing to be done because nobody cares.”
The thing about rare diseases, Shirley said, is that they isolate you. There are some who can sympathize, and support groups, but with a rare disease like kidney cancer comes loneliness. His father was alone in his fight — no doctors or treatment behind him. His family was fighting for him, friends were supportive, yes. But that kind of loneliness is a desert in which every closed doctor’s door is just a moment of vanished oasis — hope, a shimmering trick of the light, and then nothing.
Shirley said his roommate shrugged his shoulders.
“Well, why don’t we do something then?” Jones said. “ We’re Penn State football players. If we do something stupid, it’s on the front page of the newspaper. Let’s take the spotlight we have and shine it on some of these people that need a voice.”
The two players started talking about it in the locker room. His teammates rallied around the idea of a summer lifting competition.
His teammate, Dave Costlow, approached him with the intent of running the competition like a business — a legitimate event that would serve as a fundraising organization.
Costlow, a center, felt a void in his life because of the year-round commitment to school and football. He wanted internship experience; something that could help him prepare for the real world after graduation.
They sat down in the Lasch building and started planning. In three months, they’d raised about $13,000. Forty players participated in the first Lift for Life event, held in 2003. A couple hundred fans were in attendance.
“We really felt like we had created something special,” Shirley said.
After registering as a student organization — “We wanted to make sure it was known that this was created and operated by student-athletes,” he said — they held a second Lift for Life, a year later.
They raised about $38,000, and more than $50,000 in just 15 months.
“All for an organization that we’d never really met,” he said, meaning the Kidney Cancer Association in Chicago.
Shirley, Costlow and another volunteer and member of the dance team, Carrie Konosky, decided they were going to drive to Chicago to meet the people they’d been donating all that money to.
“They said they would be in town, but it was their biggest conference of the year,” he said. The organization would be short-staffed that weekend — down to three members.
“We figured it was the only opportunity we’d have. So we called our parents, went home and did our laundry ... and ended up renting a car to drive to Chicago in the middle of the night,” he said.
His ‘ah-ha’ moment
Shirley said they were about an hour out of Chicago when the organization called them to tell them their keynote speaker had canceled, and asked if they’d be interested in taking their place.
“We pulled over at a rest stop, changed our clothes, got to the event site, and they basically valeted our car and pulled us right up on stage,” he said.
That was when he had his moment. His “ah-ha” moment, as he calls it.
“Here we were, we drove through the night, still hadn’t met anybody yet, and we were standing in front of a room full of people who lived in the same world that me and my family lived in,” he said. “The world where we were told that nothing can be done because nobody cares.”
Shirley said they began to talk. They were interrupted three times in the first 10 minutes by standing ovations.
“That was when I learned that if we accomplished nothing else, we were at least in a position to inspire people’s hope by simply taking action.”
Fast forward a few years.
Shirley and Costlow finished their master’s degrees and all three went to work.
Then, Shirley’s dad died in 2005.
A month later, new kidney cancer treatment came to market, the first in 12 years, and the Kidney Cancer Association directly attributed Lift for Life at Penn State for being a catalyst for its arrival.
Finding out how close they came to missing out on this potential treatment for his dad inspired Shirley and a fellow Penn State graduate, Dave Wozniak, to file the paperwork for “Uplifting Athletes.” They wanted to align college football programs with rare diseases to create awareness and raise funds. The students would get the experience of running their own small business while helping out a cause they felt personally close to.
But at first, they were alone. They reached out to big schools — an attempt to create a “demand brand” in which the big, media-popular schools would adopt the cause and start a trend — but nobody bit. They were isolated again.
Until one day, they weren’t.
Shirley sat down in a coffee shop to meet with four players from Colgate University, at the recommendation of the school’s athletic director. They, like Shirley’s old friend Dave Costlow, wanted more out of their college experience. They wanted real-world knowledge that they couldn’t obtain via internships due to their strict student-athlete schedules.
“I said, ‘OK, it’ll take 6-18 months to get everybody on board based on the experience I had elsewhere,’ and I got in my car and drove four hours home,” said Shirley. “And by the time I got home I had an email from them that they had done everything that was required to get started.”
It began to spread.
Boston College hopped on board shortly after for linebacker Mark Herzlich, and to fight Ewing’s sarcoma, a rare form of bone cancer. They raised $122,290 to battle the disease. This year, their cause is Duchenne muscular dystrophy.
Nebraska stood behind Rex Burkhead and his 6-year-old friend, Jack Hoffman, who was suffering from a rare pediatric brain tumor, and joined in 2012. The team then created what is considered by some to be the greatest sports moment of this century when, in 2013, Jack suited up in a Cornhusker uniform and ran for a touchdown during the Huskers’ spring football game.
Each of the 25 chapters has a story near and dear to the student-athletes themselves. They are filed and registered as outside student organizations. They raise the money (through a digital third-party system and non-student-athlete treasurer, to abide by NCAA regulations). They market and run each event themselves. They keep the tradition going, year after year.
“We don’t baby-sit them,” said Andy Shay, director of external affairs and communications at Uplifting Athletes. “That’s the true beauty of it. They’re not just ‘doing it (for the athletic department)’. They’re actually responsible for it ... these guys that are in the leadership positions get true internship and leadership experience.”
“These guys” include Penn State’s Ben Kline. Shay said players like Kline, those involved in leadership roles with Uplifting Athletes, are cut from a different mold.
“It becomes personal. It’s something that they own,” he said.
Kline, now a senior linebacker for the Nittany Lions, has helped keep Uplifting Athletes’ original chapter afloat through five different coaches (interim or permanent) and four athletic directors.
“I’m not sure there’s much life can throw at him that he won’t be prepared for,” laughed Shirley.
Kline said he was good friends with the people who ran the chapter prior to his arrival, and so it felt like a natural fit to step into a leadership role.
“It’s important to do something with the platform that we have to benefit people who aren’t as fortunate,” he said.
Sounds a bit like what Shirley’s roommate, Damone Jones, suggested more than a decade ago.
Affecting real change
Kline and his teammates were nearing the $100,000 mark on Thursday — a full two days before the event. They’re expected to raise over $150,000 and attract hundreds of people from all over the state. Last year, they topped $1 million in donations since Lift for Life started.
He said he doesn’t really think about the money, though. Kline considers the impact, instead.
And in the past decade, that’s been a pretty large one.
Penn State is the largest private donor to the Kidney Cancer Association. Uplifting Athletes has chapters in prominent collegiate programs across the country and raises hundreds of thousands of dollars for rare diseases each year. Dozens of current NFL players participated in Uplifting Athletes. A “Letterman” network stretches across the country. These are young people who had an opportunity to affect real change using the platforms they had. They weren’t forced to do so through an athletic department’s public relations machine.
“They raised their hand and volunteered,” said Shay.
And in the last year, another cause further spread the reach of the organization.
Penn State alumnus and NFL player Devon Still’s daughter, Leah, was diagnosed with stage 4 neuroblastoma, a rare form of cancer. His touching story became well-known throughout the football community and beyond.
Shirley decided to create a platform to help Still fundraise. However, he couldn’t use Uplifting Athletes for Still’s cause.
He created a software, housed at www.pledgeit.org, that allows users to create fundraising campaigns and share their stories — anybody can use the platform, as opposed to only college football players.
At 22, Shirley saw firsthand how isolating a rare disease can be. How people are told matter-of-factly to “enjoy the time they have left,” as if that’s possible. How achingly close somebody can come to getting treatment, and miss it by just days.
Shirley saw and felt firsthand how a group of people, albeit a small one, can feel like there is nobody out there fighting alongside them.
Until they are.