Gala For Manalapan Boy Battling A Serious Disease

MANALAPAN, NJ — Saturday, Oct. 7 will be the third annual JAR of Hope gala at Forsgate Country Club, which raises funds to combat a very serious childhood disease that has struck a local Manalapan family.

Jim and Karen Raffone of Manalapan are the founders of JAR of Hope. Like most people, they had never heard of Duchenne Muscular Dystrophy before. But when their then-four-year-old son, James Anthony (“Jamesy”) was diagnosed with it in Sept. 2013, their world turned upside down.

Duchenne is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 infant boys. It's a muscle-wasting disease and it gets progressively worse over time. Duchenne results in progressive loss of muscle strength, and most patients must use wheelchairs by their early teen years. The muscle weakness eventually leads to life-threatening heart and lung problems.

“When we asked the doctors how we could fight this disease,” Jim Raffone said. “They told us to ‘just take him home and love him until he dies.’ But we weren’t satisfied with that answer.”

The Raffones spent the weekend crying in their room, so Jamesy and his two sisters wouldn’t see them. But when they got up on Monday, they decided to stop crying and start doing something.

“We found out that, because the disease is so rare, most drug companies weren’t even testing for a cure," Raffone says. "They didn’t think it was financially worth it!”

So the Raffones started JAR of Hope, to raise funds for Duchenne research, and to increase awareness.

This year’s gala features the popular New Jersey band “The Nerds." Tickets include a five-hour open bar, cocktail hour, gourmet dinner, raffle baskets with upscale gifts and a silent auction. It all takes place from 7 p.m. to midnight on October 7th at the Forsgate Country Club, 375 Forsgate Drive, Monroe Township, NJ 08831. Tickets are available at www.jarofhope.org/events or at (732) 414-6670.

“We at JAR of Hope fight all year long to increase awareness about this disease that kills children,” Jim Raffone says. “But this gala is for the whole community, a chance for the community to celebrate our progress … and a chance to just have a special night of fun.”