Manalapan, Asbury Park Dads To Climb Mount Everest For Duchenne Muscular Dystrophy Benefit

Source: RLS Media

Matt Scarfo will soon climb on Mount Everest to raise funds to research a very rare – and always-fatal – children’s disease.

Scarfo says that Duchenne muscular dystrophy occurs only once in every 3,500 live births. These kids (mostly boys) are in wheelchairs by their early teens, breathing on ventilators by their mid-late-teens — and in graves by their early twenties due to suffocating.

Scarfo began communicating with Jim Raffone, CEO and Founder of JAR of Hope. “I had heard about the work being done by JAR of Hope foundation in Asbury Park in raising funds to research a cure for Duchenne,” Scarfo says.

“(Raffone) has a twelve-year-old son with Duchenne. And two of my kids are close to his age, so learning about this disease hit me like a hammer.”

“Doctors told us ‘There is no cure — just bring him home and love him until he dies’,” Raffone says. “But after the initial shock of hearing that, my wife Karen and I decided that waiting for our son to die — waiting for any child to die — was not an option. So we founded JAR of Hope.”

In April, Scarfo will join Raffone and Dillon Doeden, a Nebraska resident whose four-year-old son has Duchenne, to climb Mount Everest.

“When Jim told me he was going to climb on Everest to raise funds to research a cure,” Scarfo says, “I wanted to help out. It’s a long time away from family and work. But if that’s what it takes to draw attention to Duchenne…I’m all in.”

The three men can’t be away for the two months it takes to get acclimated at a base camp and then try to summit on the top of Everest. So they’re aiming for the Upper Base Camp, at 18,372 feet. They’ll leave on April 25 and return on May 13.

The three Duchenne dads are hoping to raise $150,000 to go toward the $750,000 cost of clinical trials to start researching a cure at the University of Florida.

“If we can achieve our goal,” Scarfo says, “it will give some hope to families who now have none.

“Climbing Mount Everest is obviously an unorthodox way to raise funds, but we can’t hold fund-raising events because of COVID — and these kids are dying even as we speak.”

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