Old NJ Law Prevents This Charity From Fundraising, Founder Says

MANALAPAN, NJ - Manalapan father Jim Raffone has traveled the world to raise funds for a cure for his 11-year-old son Jamesy’s rare and fatal disease. He’s completed some of the hardest races on the planet, ranging from a seven-day 171-mile run through the desert to a 12-day trek throughout New Zealand and Australia. Most recently, Raffone walked from Washington D.C. to Old Bridge to fundraise during COVID-19, a global health crisis which has uprooted traditional galas, golf outings and other traditional methods of raising money.

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

Raffone told Patch in October that he planned to raise additional funds by auctioning off a brand-new Ford Mustang to fund a new round of potentially lifesaving treatment for Jamesy and other children affected by the disease, Duchenne Muscular Dystrophy (DMD), 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.

“The State Attorney General’s office is telling us we can’t [raffle the car],” Raffone said in a statement, “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.”

Jim and Karen Raffone founded JAR Of Hope in 2013, when four-year-old Jamesy was diagnosed with DMD. The disease is 100 percent fatal and life expectancy only reaches patients’ mid-20s.

JAR Of Hope is conducting a study of children with Duchenne dubbed Operation Lifeline, which utilizes a chemical formula that may extend the lives of these children. And the results so far are very encouraging. But experimental trials are very expensive…in this case, $35,000 a month.

“Because of the virus, we can’t stage big events anymore,” Raffone said, “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.”

JAR Of Hope has since enlisted State Senator Samuel Thompson and U.S. Representative Christopher Smith in the effort to change the old law. Jamesy is now 11, and still able to move around on his own. But according to a news release, without the $35,000 a month it costs to keep called Operation Lifeline going, the clock is ticking for the 20,000 children with Duchenne in the U.S.

“This new help for their foundation, if we get the governor to look into it, I think would be a real boost not just to those with Duchenne, but those with other 501c3s and other nonprofits as well,” Rep. Smith said over the phone.

“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?”