NJ Town Calls On State To Assist Manalapan Man’s Fundraising

MANALAPAN, NJ - Old Bridge Township officials are calling on Gov. Phil Murphy to abolish an ‘obscure’ state law that prevents Manalapan father Jim Raffone from finding a cure for his 11-year-old son’s fatal disease.

Raffone's son Jamesy was born with Duchenne Muscular Dystrophy (DMD), a rare genetic disorder that affects some 20,000 boys in the U.S. Jim and Karen Raffone founded JAR Of Hope in 2013, when four-year-old Jamesy was diagnosed with DMD, to seek a cure for the disease, which is 100 percent fatal. In fact, life expectancy only reaches patients' mid-20s.

Raffone told Patch in October that he planned to raise funds by auctioning off a brand-new Ford Mustang to raise money for a new round of potentially lifesaving treatment for Jamesy and other children affected by the disease, with 1,000 tickets slated to be sold for $100 dollars each - but Raffone now says that his fundraising plans have been obstructed by an antiquated state law.

"Because of the virus, we can't stage big events anymore, so we've had to get creative. For example, last month we walked from Washington, D.C., to Old Bridge, NJ. We're trying to give these children a fighting chance. And we came up with the idea for an online raffle because traditional fund-raising events cannot take place now," Raffone said.

"The State Attorney General's office is telling us we can't [raffle the car], and I have to be the one who tells the parents of these kids. The Attorney General's Office says state law prohibits online gambling. But that's not true; the law(s) regulating gambling were written back in 1950 … half-a-century before the Internet even existed."

Related: Manalapan Dad To Walk From D.C. To NJ For Son With Rare Disease

On Monday, the Old Bridge Township Council passed a resolution calling on New Jersey to allow charities to use online raffles for fund-raising.

“I proposed the resolution when I realized that in New Jersey you can bet on a horse or a sport,” Old Bridge Councilman Erik DePalma said in a statement, “but you can’t buy a raffle ticket online to save children who have a disease because of an old, antiquated law written seventy years ago. What kind of sense does that make?”

DePalma added that he sees the job of a township council as taking care of its citizens, from the youngest residents to the eldest.

“Our focus at JAR Of Hope is simple,” Raffone said. “Give these little children a chance to become adults.”

JAR Of Hope has since enlisted State Senator Samuel Thompson and U.S. Representative Christopher Smith in the effort to change the old law as, according to a news release, without the $35,000 a month it costs to keep new treatments and therapies going, the clock is ticking for the 20,000 children with Duchenne in the country- including Manalapan resident Jamesy.

"In New Jersey, you can bet on a horse or various sports events, to make a profit," Raffone said. "But, because of a law passed fifty years before the Internet was born, you can't buy a raffle ticket online - from a charity - to help save a child's life! What's wrong with this picture?"