Jim Raffone, the CEO and founder of the local charity JAR of Hope, is planning to climb Mount Everest with several friends in May to save children who have a very rare fatal disease.
“Why Everest?” Raffone asked. “Well, charitable foundations have not held fundraising events because of COVID. So we have to find other ways to give these kids a chance to become adults.”
This fatal disease is Duchenne muscular dystrophy, a muscle-wasting disease occurring once in every 3,500 live births. The children (mostly boys) are in wheelchairs by their early teens, breathing on a ventilator by their mid- to late-teens, and dead by their early 20s, according to a press release.
When Raffone’s son, James Anthony, now 12, was diagnosed with Duchenne in 2013, doctors told the Raffones there was no hope.
“They said to just bring him home and love him until he dies,” Raffone says. “But Karen and I decided that waiting for him to die was not an option. And when we heard there were 20,000 other families in America who had been told the same thing, we founded JAR of Hope.”
Raffone, Joe Russo of Manalapan, Matt Scarfo of Blairstown, and Nebraska resident Dillon Doeden (whose 4-year-old son has Duchenne), will climb on 29,032-foot Mount Everest to raise funds to research a cure, according to the press release.
It usually takes about two months to reach the summit, with at least a month at Base Camp to get acclimated to the altitude, but Raffone and his friends do not have that kind of time so they are aiming for the upper Base Camp at 18,372 feet. They are flying to Nepal on April 25 and will return on May 13, according to the press release.
They are hoping to raise $150,000 of the $750,000 needed for clinical research at the University of Florida.
Raffone, 51, has run marathons and week-long “Ultras” around the world to raise funds for these children. He holds six world records for his age group and has been told he is leading only the second New Jersey group to climb on Everest, according to the press release.
“We can’t raise funds the usual way now,” Raffone said. “But these kids deserve a chance to live and climbing on Mount Everest will be easy compared to what they face every day.”