You can help this NJ boy who suffers from a deadly disease
With all of the restrictions placed upon charitable foundations during COVID, it’s become increasingly difficult to hold fundraising events. And there are so many charities that are suffering because of it.
One that is very close to my heart is JAR of Hope, which helps children diagnosed with a very rare, fatal disease, Duchenne Muscular Dystrophy. It occurs only once in every 3,500 live births. Kids diagnosed with Duchenne (mostly boys) are in wheelchairs by their early teens, breathing on ventilators by their mid-late-teens, and in graves by their early twenties. After suffocating.
JAR of Hope was founded by NJ resident and superhero Jim Raffone after his son, James Anthony (“Jamesy”) was diagnosed with Duchenne in 2013 at four years old. Doctors told Jim and his wife Karen that there was no hope, to just bring him home and love him until he dies. When they found out there were 20,000 other kids in America with Duchenne, they decided that waiting for him to die was not an option. So they founded JAR Of Hope.
Jim came up with a unique way to hold a fundraising event by climbing to the top of the world, Mount Everest.
Raffone and two JAR Of Hope friends will climb on 29,032-foot Mount Everest to publicize the need for research on Duchenne. It usually takes about two months to make this trip, with at least a month at a Base Camp to get acclimated to the altitude before trying to summit. But Raffone and friends don’t have that long. So they’re aiming for the upper Base Camp, at 18,372 feet. The tentative departure date is April 25 with a(tentative return of May 13.
“We’re hoping to raise $150,000,” Raffone says. “To go toward clinical trials on researching a cure for Duchenne at the University of Florida. It’s certainly an unorthodox way to raise funds for research. But we can’t hold events now. And these kids are dying even as we speak.”
The men will fly to and return from the Federal Democratic Republic of Nepal. But before they leave, there will be a benefit concert on February 23 at the Berkeley Oceanfront Hotel in Asbury Park, with the popular Pat Roddy Band.
Raffone’s no newbie at this. He’s run marathons and week-long “Ultras” around the world to raise funds, sometimes experiencing 40,000’ of altitude changes while carrying his own pack.
“Mount Everest? Well, desperate times call for desperate measures,” Jim Raffone says. “And without fund-raising events, parents of kids with Duchenne are certainly experiencing desperate times right now.”
Opinions expressed in the post above are those of New Jersey 101.5 talk show host Judi Franco only.
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