Well Being: Leading uphill climb to ease the suffering from cystic fibrosis

Once a week, Jim Wilson rides his bike to work from his Glen Mills home, 42 miles round trip, demonstrating his love of cycling and his desire to improve the lives of those with cystic fibrosis.
Once a week, Jim Wilson rides his bike to work from his Glen Mills home, 42 miles round trip, demonstrating his love of cycling and his desire to improve the lives of those with cystic fibrosis. (MICHAEL S. WIRTZ / Staff Photographer)
Posted: January 15, 2013

Jim Wilson describes himself as "an adrenaline junkie." It began with motocross racing when he was a teenager. Later in life, he became a mountain and ice climber, scaling peaks all over the world.

"I really liked ice climbing," Wilson says. "It's like doing a dance with ice. The ice is always changing and different."

In 2009, realizing that he was courting more fatal risks, Wilson quit climbing and turned to mountain biking, which he had taken up in the mid-1990s to reform his body.

Today, Wilson, 57, is director of the gene therapy program at the University of Pennsylvania's medical school. At 6-foot-2 and 185 pounds, he is lean and athletic. Once a week, he cycles to work from his home in Glen Mills, Delaware County, a round trip of 42 miles - emblematic not only of his love for the bicycle but also of his desire to improve the lives of those with cystic fibrosis. More on this later.

He was not always so fit. In his 30s, a bout with viral meningitis led to crippling arthritis in multiple joints. At one point, he was taking 15 aspirin a day. Because of the pain and a consuming job, he wasn't exercising, and his diet was poor.

When Wilson came to Penn in 1993, he weighed a porky 260 pounds. He hired a trainer, began lifting weights and running, and improved his diet. Soon, he was shedding two pounds a week. Within two years, he'd pared his physique to a hard 190 pounds.

When running began causing hip pain, he switched to mountain biking. He tried the rugged trails along the Wissahickon Creek several times and returned with bloody knees. The sixth time he visited, he broke his hand.

About the time he quit climbing mountains, a new sport had emerged - mountain bike endurance racing. In his first try, over a 100-mile loop, Wilson placed fourth among riders older than 50. He was hooked, and today he races in six or seven 100-mile races around the country.

In his Penn lab, Wilson is seeking cures for diseases caused by genetic defects, such as cystic fibrosis.

"We have developed the technology for curing people with genetic disease," Wilson says, "just not cystic fibrosis. It's one of the more difficult."

Cystic fibrosis is the most common genetic disease in the United States, affecting 30,000 people. Wilson calls it "an orphan disease," because it doesn't get the attention or financial support of cancer and heart disease.

The CF gene defect hinders production of fluid in the airway passages of the lungs, clogging them with thick secretions of mucus that, if not removed, can cause infection. It also affects the pancreas, which doesn't make the enzymes needed for digestion and absorption of nutrients. Another symptom is excessive salt in perspiration.

CF, while incurable, is manageable with attentive treatment. Those who develop CF now can expect to live into their early 40s, Wilson says.

"There's good data that if you have cystic fibrosis and exercise regularly, you're healthier, and the disease progresses at a slower rate."

If he couldn't yet cure CF, Wilson figured he could help those with the disease enjoy healthier, longer lives. And so, in early 2010, he launched Team CF. He began at the national level by forming a female team of pro endurance mountain bikers, whose success, he hoped, would spread the word about CF to the cycling community, thereby enlisting sponsors and recruiting participants.

So far, it seems to have worked. The 10 elite pro cyclists have become "a force" in the sport, Wilson says. Last year, Team CF's Cheryl Sornson won the female title in the National Ultra Endurance Series.

Meanwhile, about 140 cyclists ride with Team CF clubs in 28 states - caregivers, friends, relatives of those with CF, and about 25 riders with the disease.

Last year, Wilson produced a documentary, Catching Air, about Kaitlyn Broadhurst, then 23, of Prospect Park, Delaware County, a self-described "CFer" who managed to finish the seven-day Trans-Sylvania Mountain Bike Epic, near State College, an event Wilson describes as "the most grueling multi-stage mountain bike race in the U.S."

"Team CF is about starting a lifestyle of exercise," Broadhurst says. "It has done wonders not only for my health but also my emotional well-being - having the support of team members who are constantly reminding me that you can do it, who want nothing but success for people with cystic fibrosis. . . . I feel like I can do anything."

Over the past three years, Team CF has partnered with the Cystic Fibrosis Foundation and has helped its Cycle for Life program raise more than $6 million for research. Wilson has big plans for this year - expanding participation in Team CF from 150 to a couple thousand.

"It gives people with cystic fibrosis meaning and a reason to get on a bike and get fit," he says. "It gives them a sense of control over something they can't control.

"What inspires me is how these kids and young adults don't let CF define them. They push forward despite the handicaps. Their attitude is: 'I have CF, but CF doesn't have me.' "

For more information or to see the documentary Catching Air, go to www.teamcf.org.

"Well Being" appears every other week, alternating with Sandy Bauers' "GreenSpace" column. Contact Art Carey at art.carey@gmail.com. Read his recent columns at www.philly.com/wellbeing.