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Event This Weekend to Raise Money for Local Boy with Rare, Fatal Disease

MANALAPAN, NJ (November 16, 2015) – JAR of Hope, a foundation for little children with a very rare, fatal illness, is staging a fundraising Gala this Friday, November 20. And one of these children is a resident of Manalapan.

JAR of Hope was started two years ago by Manalapan residents Jim and Karen Raffone, when their four-year-old son James (“Jamesy”) was diagnosed with a very rare – and fatal – mutation of Duchenne Muscular Dystrophy. This mutation is so rare, in fact, that Jamesy Raffone is one of only 120 children – all boys – in America who have it. Its victims are in wheelchairs by their early-teens. And in graves by their early-20’s.

“At our son’s diagnosis,” Jim Raffone says, “the doctors told us to just ‘bring him home and love him until he dies.’ They said there was no cure…and that drug companies would not test cures for a disease with only 120 victims. We decided that ‘waiting for him to die’ was not an option. And that it shouldn’t be an option for the other parents of these little boys. So we started JAR of Hope Foundation.”

The foundation has become increasingly visible in recent months. In August, it staged a fundraising event that nearly broke the Guinness World Record for the most people doing push-ups together. Runners representing the foundation recently raised $50,000 in the New York City Marathon. And JAR of Hope was written about recently in The New York Daily News. Now, it’s having an important Gala at 7:30 p.m. on Nov. 20, at the Battleground Country Club, 1 Covenhoven Road, Manalapan.

There will be a silent auction, including Major League Baseball memorabilia donated by the New York Yankees, New York Mets, and Philadelphia Phillies. In addition, local celebrities and well-known entertainers will be taking part. Pat Marzo, Commissioner of the MYFA (Manalapan Youth Football Association), will present the “Player of the Year” award. Kim “Docks” Wisniewski, owner of Docks Clam Bar, will be presenting the “All-Star Award.” Entertainment will be provided by well-known Freestyle group TKA, along with 102.7/KTU Deejay Antonio Corrao. And there will be a gourmet dinner, a five-hour open bar, and numerous raffles.

“These young boys can’t speak for themselves,” Jim Raffone says. “So we’re speaking for them. We’re showing them and their families – and the rest of the world – that someone does care. And that there are people who will not just give up and wait for them to die.”

For more information or to buy tickets for the Gala, go to www.jarofhope.org.

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