Manalapan dad to trek Mount Everest as part of Duchenne Syndrome fundraiser

In the nine years since his son was diagnosed with Duchenne muscular dystrophy, Jim Raffone has run ultramarathons, organized a world-record Lego string, enlisted the help of professional soccer players and rung the bell. the closing bell of the New York Stock Exchange to fund the treatment of death. state.

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

Raffone and a small crew are heading to base camp for the world’s highest peak in Nepal later this month. At an elevation of nearly 18,000 feet, base camp is where hundreds of climbers from around the world make their home each spring. It is the launching pad for attempts to reach the 29,000 foot summit.

Raffone and company will not attempt to climb Everest. Even reaching the base camp is fraught with pitfalls. It requires a good week of hiking each way through difficult and sometimes dangerous terrain. They fly to Nepal on April 25 and plan to return on May 13. The goal is to raise $200,000 for a $750,000 clinical trial that the Raffone family’s nonprofit, JAR of Hope, is seeking to fund at the University of Florida.

Helping Hands:The Jackson family needs a device that saves their boy from spasm pains

Plans for the clinical trial have been in the works for some time, but things changed in late December when Richard Dell’Anno, a longtime friend of Raffone and ardent supporter of JAR of Hope, died of COVID at the hospital. 50 years old. Dell’Anno and his late father were the inspiration for an annual “Texas Hold ‘Em” poker tournament just before the Super Bowl that brought in six-figure donations. The event could not continue without him.

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

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

By helping many:NJ Donors Travel Nearly 3,000 Miles to Deliver 15,000 Bottles of Water to Texas Food Bank

Jamesy Raffone (left) with dad Jim Raffone

“In 2015, I pitched this idea, and our (nonprofit) board did everything they could to make sure I didn’t,” he recalls. “Right now, after the things I’ve achieved over the years, they’ve been very supportive of me. We kind of ran out of things to do. It seems like the natural evolution.

Duchenne muscular dystrophy is a genetic disease that causes a progressive loss of strength due to the absence of dystrophin, a protein essential for building muscle. Eventually, the weakness leads to paralysis and life-threatening heart and lung problems. Life expectancy is in the twenties.

Raffone’s son James, known as Jamesy, was diagnosed when he was 4 years old. He is now 13 and in grade seven at Manalapan-Englishtown Middle School.

Jamesy Raffone on the shoulders of dad Jim Raffone at a JAR of Hope event

To keep hope :Charity Manalapan wins approval to conduct clinical trial of Duchenne muscular dystrophy drug

The clinical trial that 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 to 16, Raffone said. Jamesy applies to be part of it.

“Internally he’s doing very well,” Raffone said. “Externally, at the level of the muscular tissues, the disease takes hold of him. That’s why I’m speeding things up. It’s a race against time. »

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

“What matters to me is that we raise awareness about Duchenne muscular dystrophy by doing something so beautiful,” Raffone said. “I’m more worried that we won’t raise funds for the clinical trial than coming back OK.”

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

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


Source link

Comments are closed.