Manalapan, NJ dad will climb Mt. Everest for son battling Duchenne muscular dystrophy
What do you do after you've amateur boxed at 50, pushed to break the world record for pushups in under a minute, and walked from Washington, D.C. to Old Bridge, New Jersey to bring attention to JAR of Hope, which raises money and awareness to fight Duchenne? You climb Mount Everest, of course.
That's what James Raffone of Manalapan is going to do. Raffone, whose son Jamesy was diagnosed with Duchenne muscular dystrophy at the age of 4 set up the charity to raise both awareness and money to fight this disease.
James is taking a team of courageous men to climb Everest. Dillon Doeden is another Duchenne Dad. His 4-year-old Connor was recently diagnosed with Duchenne. Also NJ native and fitness advocate Matthew Scarfo, who does not have a child with Duchenne but is a big supporter of the NJ-based nonprofit.
James and a small group of men will be traveling to Nepal to climb their way to the base camp of Mt. Everest. 17,598 feet into the sky. The team will be climbing to raise awareness and fund a clinical trial ready to start.
Raffone called into my New Jersey 101.5 show, you can listen On-Demand starting at 1:05:22
How did you come up with the idea to climb Mount Everest?
"Unfortunately, we are running out of things to do with people, people are still very fearful to gather. We haven't had a gala in three years, so this opportunity arose and I only had 50 days to make a decision: it was either I am going or not. And looking at the calendar of events, it was one thing after another canceled. So I was like what do I do, and someone called me like 'You wanna go to Everest?' and I was like, 'absolutely' without even thinking twice, without even consulting anyone, I was in."
Why are you going to Nepal?
"JAR of Hope will be filming a documentary about how children with Duchenne live in Katmandu. How poor are the conditions? What resources can we bring to Katmandu for the children? Jamesy is the inspiration behind JOH but it is built on caring for all of the Jamesy’s throughout the world. It’s been noted that 70 children with Duchenne have passed in the last 15 years who live in Nepal. We must help prevent these children from dying."
Ruffone's attempts to raise money and awareness does pay off. He has helped to get an IND (Investigational New Drug Application) filed and approved by the FDA. The compound name is HYP-DMD-01. It is all set to start at the University of Florida as soon as JAR of Hope can raise $750,000 of the total $1.500,000 needed to complete the study.
James and the team know the cure is not atop the mountain. But the reason they are climbing is to show the world their desperation to find a cure.
James stated, “It’s been 200 years and not one child has survived Duchenne. Our hope is that we can raise the $750k on this trip to start the clinical trial and provide 12 boys a therapy that we know is safe and efficacious."
He talked about the frustration of being a father who would do anything to help his son, helplessly watching Duchenne take its toll on his boy.
"From a father with a son with a debilitating disease, to see other children not play with him or call to be around him because he can't do what they can do, and see your child sometimes become isolated because of this disease, you know that kind of hurts more than the disease itself.
"He is looking at in the next two or three years become quadriplegic and I can't allow that to happen. I got to do what I can do, I know the cure is not at Everest, but I hope when I get to Everest someone will reach out and say look we got the money for you for these kids, him and eleven other kids, and that's what we need."
To learn more about how you can help support these men click HERE
On Feb. 23, there will be a benefit concert at Jonny and June’s, located at the Berkeley Hotel in Asbury Park. Jennifer Stein of Fortune Web Marketing will be hosting. Performing will be the Pat Rody band. Doors open at 6 p.m.
To get tickets click HERE
Opinions expressed in the post above are those of New Jersey 101.5 talk show host Steve Trevelise only. Follow him on Twitter @realstevetrev.
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