STATEN ISLAND, N.Y. — When charity fundraising came to a halt with the outbreak of the pandemic, James Raffone decided to take matters into his own hands.
As founder and CEO of JAR of Hope, (https://www.jarofhope.org/) Raffone will raise funds for children with Duchenne Muscular Dystrophy by climbing to top of the world — Mount Everest!
Born and raised in Oakwood, the Manalapan, N.J. resident is only the second Staten Islander to climb on the earth’s highest mountain above sea level.
Duchenne is an extremely rare fatal disease which occurs only once in every 3,500 births — and Raffone’s son, James, known as Jamesy, is one.
At 4, Jamesy was diagnosed with the condition in which there’s an absence of a protein that strengthens muscle fibers and protects them from injury. The disease causes muscles in the body to weaken, with the eventual degeneration of all voluntary muscles.
The youngsters, in most cases boys, find themselves in wheelchairs usually by their early-teens, often breathing on ventilators by their mid-to-late teens and succumbing to the disease by their early 20s.
“Our son James Anthony — ”Jamesy” — was diagnosed with Duchenne in 2013, at 4 years-old,” Raffone says. “Doctors told Karen and I there was no hope — to just bring him home and love him until he dies. But when we found out there were 20,000 other kids in America with Duchenne, we decided that waiting for him to die — waiting for them to die — was not an option. So we founded JAR of Hope.”
Two months later, Raffone sold his construction company and founded JAR of Hope, the charity dedicated to raising awareness and supporting research for Duchenne muscular dystrophy in hopes of eliminating the disease entirely.
Jamesy will turn 13 on March 31.
Today, the JAR of Hope Foundation — the acronym for James Anthony Raffone — helps patients pay the exorbitant cost of experimental treatment and has a mission to someday ensure that no parents will ever have to hear those same words.
Raffone and three JAR of Hope friends will climb 29,032 feet of Mount Everest to publicize the need for research on Duchenne. It usually takes about two months to make the trip, with at least a month at a Base Camp to get acclimated to the altitude.
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 return on 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.”
As part of his training before climbing Mount Everest, Raffone’s been running a marathon every weekend to increase his endurance for the climb.
“I’m trying to lose weight,” says the 51 year-old. “As you go up the oxygen concentration is less, so it’s better to be lighter. I lost 13 pounds so far. I was 250 pounds and want to go down to 220,” he adds.
The men will fly to and return from the Federal Democratic Republic of Nepal.
Raffone’s not new to courageous, physical feats. He’s run marathons and week-long “Ultras” around the world to raise funds, sometimes experiencing 40,000 feet of altitude changes while carrying his own pack for seven days to survive on the Northern rim of the Grand Canyon.
And he ran 205 miles in New Zealand with 80,000 feet of elevation change for seven days.
“Mount Everest? Well, desperate times call for desperate measures,” he says. “And without fund-raising events, parents of kids with Duchenne are certainly experiencing desperate times right now.”
He explains the hardest thing to overcome is getting altitude sickness.
“You wear altitude masks and wearing it most of the day since it restricts your air intake so that your lungs expand and get stronger and you get used to taking deeper breaths,” he continued.
Raffone will be accompanied by Joe Russo, owner of The Moving Guys, Matt Scarfo, a fitness and nutrition expert, and Dillon Doeden from Nebraska, whose son was recently diagnosed with Duchenne.
“Thanks to the gentlemen who are coming with me, as well as those in the Duchenne community who are supporting our climb for a cure,” said Raffone.
Raffone’s wife, Karen, does think her husband’s a little crazy. But she’s not surprised since she’s familiar with her husband’s dedication and determination to finding a cure for Duchenne.
MEDICINE IN NEPAL
After completing research, Raffone found that in Nepal a great number of families have lost children to Duchenne over the last decade. He’ll be filming a documentary about the disease while in the country and will also raise funds for the cause.
He adds Nepal isn’t on par with the United States as far as modern medicine is concerned, but he would like to bring together the continental divide.
“Medicine has not caught up with us especially in this area,” he noted, and he would like to make a difference.
Those interested in supporting the JAR of Hope Foundation or participate in any fundraising event should visit: jarofhope.org.