Raising the Bar

Spearheaded by Lift For Life organizer Scott Shirley, a new philanthropic venture — Uplifting Athletes — goes national in its bid to find cures for rare diseases.

EDITOR'S NOTE: The following story ran in the Spring Issue of Fight On State The Magazine. Uplifting Athletes' Penn State Life For Life Challenge takes place Friday at Holuba Hall on the Penn State campus. The event starts at 2 p.m. and the public is welcome to attend. A small per-person donation is suggested.

Scott Shirley's greatest play as a Penn State football player won't turn up on any highlight reel. As a wide receiver, he spent most of his five years with the program in the shadows. Instead, his finest play came off the field, and it is poised to have a greater and more far-reaching impact than any touchdown reception ever could.

In 2003 Shirley founded Lift For Life, the now-annual summer fund-raising challenge in which Penn State football players compete in various strength and conditioning competitions benefiting the Kidney Cancer Association. Under Shirley's direction, Lift For Life will be the signature event for his fledgling nonprofit organization Uplifting Athletes. Shirley and others are working to establish chapters nationwide. They hope to raise money and awareness for “rare” diseases and are modeling the new programs on the first Lift For Life. Penn State will soon be home to the first official Uplifting Athletes chapter.

“One of the things that makes this special is that it's not just volunteering for an hour,” Shirley said. “It's not something set up by someone else that these guys participate in. And it's not just a matter of putting on your jersey and signing autographs. It's the experience they get and that they are engaged.”

Uplifting Athletes has three components. The first is professional development. College football players will gain real-world experience by running the various chapters. In addition, the social responsibility component encourages players to use their position for the benefit of society. The third component, which looks to have the broadest and most serious impact, is public engagement. Organizers want to bring attention to rare diseases and aid those charities that support them.

“[The college chapter] has to be run by the current football student-athletes. That can't be compromised,” Shirley said. “And it has to benefit a rare disease. That can't be compromised either. That's our model, and the synergy of those three components is what gives us our value.”

More than 6,000 diseases are classified as rare, and they affect about 25 million Americans. The National Institutes of Health define a rare disease as one that affects fewer than 200,000 people in the United States. Because each individual disease afflicts a relatively small portion of the population, these usually chronic and life-threatening ailments often do not receive adequate money for research and treatment. That came as a shocking revelation to Shirley, and led to the creation of Lift For Life.

Shirley's father, Don, a longtime English teacher and baseball coach at Mechanicsburg (Pa.) High, lost one of his kidneys to kidney cancer in 1993. Nine years later, while Scott was on his way home from football practice, he got a call from home. His father's cancer was back. Don Shirley had been declared cancer-free years earlier, but now a tumor was growing where his kidney used to be.

The tumor was removed the following spring. In the meantime, the Shirleys found out something about kidney cancer, something that convinced Scott he needed to do more, not only for his dad but for every other patient who lacks treatment options.

Shirley returned to campus after a doctor's visit in which his family learned that kidney cancer is a rare disease, afflicting about 30,000 Americans each year. He explained his father's dilemma to roommate Damone Jones, a fellow Nittany Lion player. Jones' response: “Why don't we do something about it?”

They did. Shirley teamed with Jones and teammate Dave Costlow. In a matter of months, they had created Lift For Life. In the process, Shirley found that three of his teammates' fathers had also suffered from kidney cancer.

After the second Lift For Life, in 2004, Shirley, Costlow and fellow Penn State student Carolyn Konosky decided on a whim to head to Chicago to meet with KCA officials at an annual patient conference. While en route to the meeting, they got a phone call explaining that the keynote speaker had canceled. Could they fill in?

Shirley opened his laptop and quickly devised a Power Point presentation. In little more than an hour, the three were onstage explaining their mission. It was one moment, but it illustrated the rapid growth of Lift For Life. Said Shirley, “We realized just how important what we were doing was.”

Carol Willie appreciates how important it is to bring attention to rare diseases. She lost a cousin to kidney cancer, and her father, Alan Doody, had a kidney removed nearly two years ago when it was found to be cancerous. In December 2005 an ultrasound test revealed that a cyst on the kidney of her husband, Jon, was not benign as doctors first thought. He too had kidney cancer, a rare occurrence for someone in his mid-30s. He spent Christmas recovering from surgery to remove the affected kidney.

Willie, who along with her husband owns five pizza franchises in Portland, Ore., soon learned how difficult the disease can be. Only in the past few years have researchers begun work on treatments that go beyond surgery and immunotherapy.

“Kidney cancer is a really, really bad cancer,” Willie said. “Your kidney acts as a filter that filters toxins out of the body. Kidney cancer is smart just like the kidney is. When you try to poison it with something like chemotherapy, it has taught itself how to filter it out of your body. That's why it isn't affected by anything that other cancer treatments do. The easy part is when it's in your kidney. You take one out and you're left with one. The bad part is when it shows up somewhere else, because even though it is no longer in the kidney, it functions just like that kidney cancer did. Unlike other cancers there isn't a moment in time when you know you are safe. Having stage one or three doesn't mean the same as it does with other cancers.”

The Willie Family.

Don Shirley is proof of that. In 2005 the cancer came back yet again. He died in October of that year. By that time, Scott was determined to build Lift For Life into a national effort.

“I said from the very beginning that it's never been about my dad. I became aware of it because of him,” said Shirley, who is now an engineer for Clark Construction near Washington, D.C. “There's nothing I can do that's going to change my loss, but I'm in a position to make a difference.”

The plan behind Uplifting Athletes and Lift For Life is to develop a strong association between college football and rare disease charities, much as the NFL has become identified with the United Way.

“Ultimately we'd like to be at every major college football program, but we're proceeding cautiously,” said Dave Wozniak, an Uplifting Athletes board member who helped Shirley develop the organization. “We can't move too rapidly, but the NFL is with the United Way, and you can't even begin to say how well that worked for the United Way. College basketball has Coaches vs. Cancer and the Jimmy V Foundation. College football doesn't really have any cause-related marketing effort. In our minds we could see the power college football has to raise awareness for rare diseases, medically underserved diseases. We're going after the rare diseases that don't have celebrity appeal, the underdog diseases if you will.”

Wozniak is vice president for branding and advertising at Lincoln Financial in Philadelphia. He has been working with Shirley for nearly three years, ever since reading about Lift For Life. He initially sent a donation and offered his help. After a Penn State football game in 2004, Wozniak and Shirley met at Wozniak's tailgate and talked for hours about Lift For Life, kicking off their working relationship and friendship.

In February 2006, Shirley drove to Philadelphia to spend the day planning Lift For Life with Wozniak, and also to mark his late father's birthday. Shirley explained to Wozniak his vision, and in May they drafted a business plan. They spent the summer getting counsel from friends and colleagues in finance and law and found they had a well thought-out plan to develop Uplifting Athletes.

“Scott is a great person,” Wozniak said. “He's articulate, very bright, focused and dedicated. It truly has been his vision to get the organization to where it is. I help him with strategy. I challenge him a lot. We have great respect for each other and what each of us brings to the table.”

The idea is to make the chapters organic. Colleges won't own them; players will.

The concept has already been embraced at several major programs, and Shirley points to the success of Penn State's program, which is now helmed by Kevin Suhey and Jason Ganter. Suhey and Ganter, Shirley said, have helped strengthen the model.

“Kevin and Jason have grown so much since they started doing this, and they are so professional about it,” Shirley said. “They are the third generation of leadership at Penn State, and they've recruited people to back them up. I think that's a pretty good indication that the model works.”

In addition to raising money and awareness, the program also aims to give the athletes professional experience.

“There's a lot of good that comes out of this. Not only do we raise awareness for the medically underserved diseases, and become an active voice for them, we also help the college football student-athlete,” said Wozniak, a Penn State alumnus. “Through their year-round commitment to academics and playing, they don't have the opportunity to take summer jobs or internships and get the practical experience. Most of these kids don't go on to the NFL. When they go on a job interview this really gives them an opportunity to come in and give them some relative experience to talk about and sell themselves to separate them from other people they're competing against for some pretty precious jobs.”

Although he's quick to credit others, Shirley was the one who took on an enormous task right out of college while also working as an engineer. He's paid for the organization mostly out of his own pocket and hasn't taken a vacation since starting work at Clark. Every vacation day he earns is devoted to Uplifting Athletes business.

For Shirley, having a hectic schedule is nothing new. A gifted and driven student, he earned his bachelor's and master's degrees in engineering in five years at Penn State. While he was getting Lift For Life off the ground, he taught an undergraduate class. The former three-sport star at East Pennsboro High in Enola, Pa., also earned Academic All-Big Ten honors as a member of the football team.

“He amazes me every day with what he's doing for Uplifting Athletes,” Konosky said. “I know how much work I have to do every day and it's my full-time job.”

Konosky began working with Lift For Life in its second year. She was a Penn State student at the time and now is director of development for KCA. Lift For Life has helped raise awareness, she said, but it has also inspired kidney cancer patients.

“It generally affects older people,” Konosky explained. “For college students, it's not going to affect most of them. If it does, it won't be for 20 or 30 years. To see them caring for people they don't know in a different generation, it's really important to our patients.”

The Willies can attest to its importance. They didn't have any association with Penn State before learning about Lift For Life through a KCA newsletter, but now they call themselves fans. Their children — Alison, 13, and Eric, 8 — regularly write to Penn State players to thank them for their efforts. (Jordan Norwood recently wrote back and sent a trading card.) Eric even draws pictures. And this summer they'll travel to Happy Valley to show their support for Lift For Life.

Carol Willie said that after Jon was diagnosed, they decided to be proactive. They traveled to Washington, D.C., to lobby Congress for more support for kidney cancer research. They wanted to tell their representatives about a medication used for terminal patients that had the potential to help others but wasn't covered by private insurance or Medicare and cost thousands of dollars.

A staffer for one senator curtly explained to them that kidney cancer is not a “popular” cancer. Before the Willies left, Alison and Eric offered the staffer some green wristbands, which represent kidney cancer awareness. The children were rebuffed. “The senator,” they were told, “does not accept gifts.”

“It's really hard to be affiliated with a cancer that doesn't get the treatment or the attention,” Carol Willie said. “You just feel like no one is trying to help. That's why what they were doing at Penn State really touched us. As far as I know, there's no one else doing anything for kidney cancer. It is so great that there are college people out there who chose a cause that isn't supported by a lot of people. There's no one else doing it. A lot of people go for something that is more popular. This is a rough, rough cancer that doesn't get a lot of publicity.”

For more on Uplifting Athletes visit www.upliftingathletes.org.

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