An Asbury Park-based nonprofit will take to the streets of New York City for the 13th consecutive year, running the NYC Marathon on Nov. 3 to raise money for research into a fatal childhood disease that has no cure.
JAR of Hope, founded in 2013 by Jim and Karen Raffone after their then-3-year-old son James was diagnosed with Duchenne muscular dystrophy, continues its mission to fund research for the rare disease.
Runners pour off the 59th Street Bridge in Midtown Manhattan during the New York City Marathon, Sunday, Nov. 3, 2024. Steve Zaffarano
Duchenne muscular dystrophy primarily affects boys, and follows a devastating trajectory, according to Jim Raffone, 54, a Staten Island native who once called Oakwood home.
“Kids with Duchenne muscular dystrophy, mostly boys, lose the ability to walk in their early teens,” Raffone said. “They lose the ability to breathe without a ventilator by the mid-teens. And they generally pass on in the early-to-mid twenties…from asphyxiation.”
The Raffones’ son James, nicknamed “Jamesy,” is now 16 years old.
Among those joining the fundraising effort is Jonathan Fazio of Staten Island, who discovered his passion for distance running relatively recently.
“I’m really pumped for this race,” Fazio said. “I didn’t really start distance racing until a year and a half ago, and I realized that’s what gave me the most joy. I finished last year’s marathon in 3 hours and 19 minutes, and my goal for this year is to get under three hours. But this isn’t about me. It’s about helping kids – and families – who desperately need help.”
Jonathan’s father, David Fazio, brings a decades-long friendship to the cause, having known Jim Raffone for 40 years.
“I’ve actually known Jim Raffone for forty years, since junior high,” David Fazio said. “He has an intense desire to help fund a cure for these kids. And it’s been a joy for me to be involved with JAR of Hope since the very beginning.”
The organization’s fundraising efforts extend far beyond the annual marathon. Jim Raffone has undertaken extreme challenges worldwide, including climbing to Mount Everest’s highest base camp at 18,400 feet and completing seven-day marathon runs in locations such as New Zealand and the American Southwest while camping in freezing mountain temperatures.
This community news was shared by the organization featured. AI was used in an initial story draft and has been reviewed by Advance/SILive.com staff.
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