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Stuart Johnson, Deseret News
From left, Parry Garff, Chris Rains and Chandler Haueter prepare to begin a 2,600-mile trek from Provo to California.

PROVO — They aren't experts on long-distance cycling, they don't pedal particularly fast, and until last week, most of them didn't even own a bicycle. But that's no reason, say four BYU students who want to raise money for medical research, not to embark on a 2,600-mile bike trek.

"It will hurt a little bit," said Chris Rains, a 22-year-old business major from California. "But I think it will be worth it in the end."

Rains, along with friends Shaun Garff, Chandler Haueter and Parry Garff, began the charity bike ride "EBTrek08" Monday with a "quick" trip from Provo to Salt Lake City. During the next six weeks, the men will make their way through Idaho, Washington, Oregon and California.

With just a few months of training on a stationary bike under his belt, Rains said cycling 50 to 100 miles a day may be "a bit ambitious." It's not as ambitious, though, as the students' plan to raise $100,000 to fund research for epidermolysis bullosa, a rare genetic disorder.

The skin disease, which is characterized by burn-like infection and blistering, can cause fusing of the fingers, deformities and in some cases, death. An affected person lacks the fibers needed to hold skin layers together, so everyday friction can result in open wounds.

"This disease is incredibly sad and painful to see," said Shaun Garff, 23, who is studying exercise science. "A handshake, a bump, a hug will just tear these kids' skin right off."

Shaun Garff has dreamed of organizing the bike ride since he accompanied his older brother for a few days on a similar trek seven years ago. As a 16-year-old, he said, he joined the trek because the idea of coasting through California sounded "cool." But after making a stop at Stanford University, where dermatologists were conducting research on epidermolysis bullosa, Shaun Garff was struck with compassion for the people who suffer from the disease.

Children diagnosed with the disorder stood in front of the university with signs thanking the cyclists for raising money.

"It was so emotional," he said. "The kids were just so excited to see the bikers. They were heroes to them."

In addition to stopping in on researchers at Stanford, this year's cyclists have arranged to visit families who have been affected by the skin disease.

"They're the reason we're riding," Shaun Garff said. "They're the reason I'm going to push myself to get to the next city and the next. The faster I get there, the more time I have to raise awareness about this disease."

The fundraiser comes at a critical time in the search for a cure. Dermatologists have successfully engineered the gene missing in children affected by epidermolysis bullosa and are ready to start conducting human trials, said Lynn Fechser Anderson, president and founder of the Epidermolysis Bullosa Medical Research Foundation.

Because the skin disease is rare, pharmaceutical companies won't invest money in research, she said.

"I think we are right on the cusp of being able to help these children," said Anderson, who lost two children to epidermolysis bullosa. "What slows us down is lack of funding."

To donate or get more information about the charity bike ride, visit ebtrek08.org.


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