It’s an uphill battle for a cure | AspenTimes.com

It’s an uphill battle for a cure

Joel Stonington
Aspen, CO Colorado

ASPEN ” When locals hit Buttermilk Ski Area on Jan. 13 to participate in the Hike for Hope, it will mark the fourth year for the fundraiser for muscular dystrophy research.

While this climb is low key compared to the big events such as America’s Uphill, it’s just as important as other races and fundraisers, organizers say.

“It’s a true family event,” Bill Sharp, founder of the Hike for Hope, said. “I think that helps with the awareness. It’s a boy’s disease. It’s a kid’s thing. We’re not trying to compete with Chris Klug (who is behind Summit for Life) or America’s Uphill. We just want the families to come out and have fun hiking up Buttermilk.”

For Sharp, muscular dystrophy has been a family issue ever since his son, Ian, 14, was diagnosed. The Sharps discovered five years ago that Ian has Becker muscular dystrophy, a disease that degenerates muscles but is slower and less severe than the more common Duchenne type.

“The research is very important to us,” Sharp said. “With Becker, true onset is early 20s. The typical scenario ” and Becker has a broad range of scenarios ” is that he’ll be wheelchair bound by early 20s.”

So far, Ian is not wheelchair bound and still participates in a broad range of activities, including skiing. But the research gets more important as Ian gets older.

Soon after Ian was diagnosed, the Sharps came up with the idea of the fundraiser at Buttermilk, and started the foundation. Bob Sharp said there was something of a gap in funding for research because the national muscular dystrophy organizations fund lifestyle offerings such as camps, and federal funding of research is low.

When the Sharps were in Denver at Children’s Hospital, they asked the director of the muscle clinic about a cutting edge researcher. They were directed to Dr. Brian Tseng.

Tseng, who has recently taken a position on a Harvard muscular dystrophy research team, is working with mice that have tricked their systems into building muscles without dystrophin ” an essential protein made scarce in muscular dystrophy ” and do not exhibit signs of muscular dystrophy.

Sharp said the foundation will continue to support Tseng and his cutting edge research, even though Tseng is moving away from Colorado.

The Hike for Hope Foundation is supported in large part by the efforts of the Sharps, who pay all of the expenses for the hike out of pocket. Bob Sharp said the whole point is to raise money for the Tseng’s research, so they help by donating overhead.

“If we need to print up some posters, that comes out of our pocket,” he said. “When you make a donation, 100 percent of that is going to research, 100 percent of entry fee as well. If someone writes a check for $100, $200 or $300, it all goes to research.”

Though starting a foundation and putting on a yearly race can be a lot of work, Bob Sharp said it wasn’t really much of a choice, they had to do something.

“If you have a son who has a disease that will compromise his lifestyle and potentially kill him before you pass away, you don’t think twice about it,” Sharp said. “You go and do whatever you can to raise money.”

jstonington@aspentimes.com


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