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

MANALAPAN, NJ - Starting Monday, Oct. 12, Manalapan resident Jim Raffone is walking from Washington D.C. to Old Bridge, New Jersey. He expects hundreds, if not thousands, to meet him en route, all in an attempt to raise money for a cure for a fatal disease affecting his son.

Raffone's 11-year-old Jamesy was born with Duchenne Muscular Dystrophy (DMD), a rare genetic disorder that affects some 20,000 boys in the U.S. It is one hundred percent fatal, and those with a diagnosis typically don’t live past their early twenties.

Jamesy was diagnosed at age four after his parents and teachers noticed muscle weakness and slowed motor skills. His father recalled the heartbreaking diagnosis to Patch:

“Initially, it tore our heart out. I don’t think it stopped hurting ever since,” Raffone said. “It’s just a devastating disease that makes you watch your child waste away in front of your eyes. The doctors told us back then and still to this day, that there’s nothing that can be done for him. Just love him until he passes, but that’s not something I can accept and I choose to fight every day for him.”

In 2013, Raffone founded JAR of Hope, a nonprofit organization aimed at finding a cure for DMD. Within seven years, Jamesy’s parents have fundraised through galas and golf outings, push-up campaigns and even 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.

“I ran 171 miles over 7 days in the desert to run 312 miles over 12 days," said Raffone. "Right now I’m about to go from Washington to Old Bridge. Everything we do has a fundraising arm tied to it."

The family has since raised over 2 million dollars for the foundation, which has paved the way for increased DMD research. JAR of Hope even helped to start the first-ever therapy for young boys with the disease.

“My son and four other kids from around the world from Africa, South Africa and Ireland, we fund for them to come in to create the compound and to diffuse it to pay the medical bills for these children, to try and develop a first therapy that will be applicable for a child with Duchenne regardless of their condition,” said Raffone.

“Statistically by the time a child is nine years old, they’re usually in wheelchairs. So my son is 11 and he’s still walking. But the disease has more time to ravage his body."

Raffone reports that one younger child from Ireland in the new experimental therapy "still has muscle tissue that we’re assuming we’ve rescued a lot sooner than we would have if we started it when my son was his age. He’s responding much, much better which is fantastic.”

However, to expand the study to more boys affected by the disease, Raffone aims to raise at least $50,000 in sponsorships through the upcoming walk. JAR of Hope hopes to raise $2.5 million dollars by February for the new trials. You can donate to the “Walk For Their Lives” event here.

Starting Monday, supporters will start and finish the 260-mile trek with Raffone and JAR of Hope Treasurer Joe Ippolito, who hope to meet 500 to 1,000 people on the way. Upon entering New Jersey, participants will walk along Route 9 North to All American Ford in Old Bridge, then to Old Bridge High School on Oct. 19 for a finish line ceremony complete with live music and appearances by Old Bridge Mayor Owen Henry and Rep. Chris Smith. Raffone expects to spend eight days on the road camping at gas stations, Wawa parking lots and Ford dealerships.

Although the Old Bridge dealership - which is operated by the Manalapan-based Savino family - has been one of the nonprofit’s biggest supporters for years, the Raffones and the Savinos grew even closer this year during another heartbreaking diagnosis. This time, the affected was seven-year-old Chase Savino (grandson of majority-owner Rich Savino), who was also diagnosed with DMD.

To Raffone, the chances of the two families both experiencing the diagnosis were almost zero. “Every one of us could’ve probably won the lotto there’s greater odds winning the lotto than this happening," Jamesy's father said. "Unfortunately, Chase Savino was diagnosed this year with DMD. The families have a greater and tighter bond now than before.”

All American Ford of Old Bridge also donated a new Ford Mustang to JAR of Hope to raffle off the vehicle. 1,000 tickets will be available for $100 dollars each.

“It’s probably going to cost me about 2 and a half million dollars to start the IND [an investigation into a new drug application] and fully fund it, to get more boys in the study. That's why I’m running from Washington D.C. to Old Bridge starting Oct. 12,” said Raffone.

“This disease, it’s horrific. It’s terrible, it’s inhumane. We need to find a cure soon because there is nothing more painful than to see your child waste away. The fact that this is still in the shadows is devastating to parents who have a child with this disease. It needs to stop. I’m willing to earn all the dollars that people donate to us to try and save these boys’ lives.”

For more information, view the Facebook event page or visit JARofHope.org.

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