JAR Of Hope And CrimsonRise Initiate Joint Effort For New Jersey/New York City Autistic Community

Source: JARofHope.org

Jim Raffone, Founder/CEO of JAR of Hope, has announced that Barbara D’Amora, a founding member of The GRACE Foundation of New York and a board member of Staten Island-based CrimsonRise — both serving the autistic community — has joined his organization’s board of directors.

In 2013, Jim and his wife Karen Raffone were told their four-year-old son James “Jamesy” Anthony Raffone had Duchenne muscular dystrophy: an extremely rare muscle-wasting disease occurring only once in 3,500 live births. There is no cure for Duchenne muscular dystrophy. Paitients are unable to walk by about age 13, unable to breathe on their own by the mid-teens — and generally die from asphyxiation in their early twenties.

“Karen and I founded JAR Of Hope to search for a cure,” Raffone says, “and to create awareness of Duchenne and through events focused on fitness, lifestyle, and motor capabilities.

“When we discovered that many with Duchenne also have autism, JAR Of Hope expanded our mission statement to include autism and invited Barbara D’Amora to join our Board. She’s been a leading advocate for the autistic community in this region for many years. And we’re working hard to raise funding and awareness for both causes.”

“Autism is now being correctly understood as a motor and sensory disorder rather than a cognitive one,” Barbara D’Amora says. “And we’re building an important partnership with JAR Of Hope to get that message out.”

D’Amora’s son Nick passed away this past May at the age of 25 — a non-speaking autistic person who communicated by spelling, and a co-founder of Staten Island’s CrimsonRise, where his mother served as an advisor.

To raise funding to research a cure for Duchenne muscular dystrophy, Raffone has created signature events around the world, among them climbing Mount Everest and launching the National Push-Up campaign. He’s participated in events like the Alps to Ocean in New Zealand, experiencing 50,000 feet of altitude changes in seven days while carrying a heavy pack (he holds six world records for his age group).

The first Jar Of Hope and CrimsonRise joint effort will be the inaugural Waterfront Run/Walk for Autism, taking place at the scenic trails of Wolfe’s Pond on Staten Island, Sunday, September 10.

“There’s a trail running along the ocean and through the woods, and great picnic and barbecue facilities for afterwards,” Jim Raffone says. “We see this becoming a marquee event for autism.”

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