'Race against time': Manalapan dad's Mount Everest trek raises money for Duchenne syndrome

In the nine years since his son was diagnosed with Duchenne muscular dystrophy, Jim Raffone has run ultramarathons, organized a world-record Lego chain, enlisted the help of pro football players and rung the New York Stock Exchange’s closing bell to fund treatment for the fatal condition.

Now the 51-year-old Manalapan resident is quite literally embarking on his biggest quest yet: Mount Everest.

Raffone and a small crew are trekking to the base camp of the world’s highest peak in Nepal later this month. At an altitude of nearly 18,000 feet, base camp is where hundreds of mountaineers from around the world set up each spring. It’s the launching pad for attempts to reach the 29,000-foot summit.

Raffone and company will not be attempting to summit Everest. Even reaching base camp is fraught with challenges. It requires a solid week of hiking each way through difficult and sometimes dangerous terrain. They are flying to Nepal April 25 and plan to return May 13. The goal is to raise $200,000 toward a $750,000 clinical trial that the Raffone family’s nonprofit, JAR of Hope, is looking to fund at the University of Florida.

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Plans for the clinical trial have been in the works for a while, but things changed in late December when Richard Dell’Anno, a longtime Raffone friend and ardent JAR of Hope supporter, died of COVID at age 50. Dell’Anno and his late father were the inspiration for an annual "Texas Hold 'Em" poker tournament, right before the Super Bowl, that brought in six figures’ worth of donations. The event could not go on without him.

“He was a dear friend, it was awful, and I found myself really in a dark place, thinking, ‘I’ve got to do something large to make up for that,’” Raffone said. “The only thing that came to mind was Everest.”

It wasn’t the first time he raised he notion.

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“In 2015 I threw this idea out there, and our (nonprofit’s) board did everything in their power for me to not do it,” he recalled. “At this moment in time, after the things I’ve completed over the years, they were very supportive. We were kind of running out of things to do. This seems to be the natural evolution.”

Duchenne muscular dystrophy is a genetic condition that results in a progressive loss of strength due to the absence of the critical muscle-building protein dystrophin. Eventually the weakness leads to paralysis and fatal heart and lung problems. Life expectancy is in the 20s.

Raffone’s son James, known as Jamesy, was diagnosed at age 4. He’s now 13 and a seventh-grader at Manalapan-Englishtown Middle School.

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The clinical trial JAR of Hope aims to fund involves the use of a hyperbaric chamber and a pharmaceutical compound for a dozen children with Duchenne ages 4-16, Raffone said. Jamesy is applying to be part of it.

“Internally he’s doing really well,” Raffone said. “Externally, muscle tissue-wise, the disease is getting a hold of him. That’s why I’m ramping up things. This is a race against time.”

Joining Raffone in his trek to Everest are Joe Russo, a retired Marine and JAR of Hope supporter who lives in Manalapan; Matt Scarfo, a personal trainer from Blairstown; and Dillon Doeden of Nebraska, whose 4-year-old son recently was diagnosed with Duchenne. They will be guided by a team of Sherpas — local experts on the Himalaya mountain range. The quest will be chronicled by Life Outside, a Canada-based filmmaker, with updates posted to JAR of Hope’s website and social-media platforms.

“What matters to me is that we get the word out about Duchenne muscular dystrophy by doing something this magnificent,” Raffone said. “I am more fearful that we don’t raise the money for the clinical trial than I am about coming back OK.”

For more information, or to donate, visit www.jarofhope.org.

Jerry Carino is community columnist for the Asbury Park Press, focusing on the Jersey Shore’s interesting people, inspiring stories and pressing issues. Contact him at jcarino@gannettnj.com.

This article originally appeared on Asbury Park Press: Manalapan dad will trek Mount Everest as Duchenne syndrome fundraiser