New Jersey Dad Trekking To Mt. Everest To Raise Awareness Of Rare Genetic Disease
A New Jersey father by the name of James Raffone is going all the way to Mt. Everest to tackle the mammoth challenge while raising awareness and funds for Duchenne Muscular Dystrophy (DMD).
Raffone, the founder of JAR of Hope, has ran thousands of miles and even completed thousands of pushups to spread awareness and to raise funds for DMD. Now, he is turning to a different tactic at the end of April: Mt. Everest.
“My team and I know that climbing for a cure is just a metaphor” said Raffone in a press release, “but we hope that by the time we get to base camp, we will have raised awareness and funding to find a cure for this debilitating disease. Our goal is to get to base camp because kids with DMD can never reach that high.”
JAR of Hope is currently raising funds to support a patient-funded clinical trial at the University of Florida. The University, through the FDA, will host a 12-patient clinical trial that will cost $1.5 million. Families of the trial need to raise $750,000 to support the Investigative New Drug Application, or the IND.
“This is why Everest came about,” said Raffone. “We need to raise something big to raise some eyebrows and ask ‘why are we doing this?’ We are trying to raise the money we need in a short period of time.”
Raffone founded JAR of Hope in September 2013. Named after his son, James Anthony Raffone, the foundation has raised nearly $9 million to date.
For more information on DMD and JAR of Hope, click here.
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