{"id":17440,"date":"2025-10-26T17:23:20","date_gmt":"2025-10-26T17:23:20","guid":{"rendered":"https:\/\/www.newsbeep.com\/us-ny\/17440\/"},"modified":"2025-10-26T17:23:20","modified_gmt":"2025-10-26T17:23:20","slug":"n-j-charity-with-staten-island-ties-that-was-founded-for-teen-with-rare-disease-returns-to-nyc-marathon","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us-ny\/17440\/","title":{"rendered":"N.J. charity with Staten Island ties that was founded for teen with rare disease returns to NYC Marathon"},"content":{"rendered":"

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.<\/p>\n

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.<\/p>\n

\"JARRunners pour off the 59th Street Bridge in Midtown Manhattan during the New York City Marathon, Sunday, Nov. 3, 2024. Steve Zaffarano<\/p>\n

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.<\/p>\n

\u201cKids with Duchenne muscular dystrophy, mostly boys, lose the ability to walk in their early teens,\u201d Raffone said. \u201cThey lose the ability to breathe without a ventilator by the mid-teens. And they generally pass on in the early-to-mid twenties\u2026from asphyxiation.\u201d<\/p>\n

The Raffones\u2019 son James, nicknamed \u201cJamesy,\u201d is now 16 years old.<\/p>\n

Among those joining the fundraising effort is Jonathan Fazio of Staten Island, who discovered his passion for distance running relatively recently.<\/p>\n

\u201cI\u2019m really pumped for this race,\u201d Fazio said. \u201cI didn\u2019t really start distance racing until a year and a half ago, and I realized that\u2019s what gave me the most joy. I finished last year\u2019s marathon in 3 hours and 19 minutes, and my goal for this year is to get under three hours. But this isn\u2019t about me. It\u2019s about helping kids \u2013 and families – who desperately need help.\u201d<\/p>\n

Jonathan\u2019s father, David Fazio, brings a decades-long friendship to the cause, having known Jim Raffone for 40 years.<\/p>\n

\u201cI\u2019ve actually known Jim Raffone for forty years, since junior high,\u201d David Fazio said. \u201cHe has an intense desire to help fund a cure for these kids. And it\u2019s been a joy for me to be involved with JAR of Hope since the very beginning.\u201d<\/p>\n

The organization\u2019s fundraising efforts extend far beyond the annual marathon. Jim Raffone has undertaken extreme challenges worldwide, including climbing to Mount Everest\u2019s 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.<\/p>\n

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.<\/p>\n

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