Manalapan Dad To Walk 300 Miles For Cure For Son's Fatal Disease

MANALAPAN, NJ - Manalapan dad Jim Raffone has 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. He even competed in a boxing match in Atlantic City against Tommy "The Tiger" Moose - all to raise money in search for a cure for a disease affecting his 12-year-old son and other children around the world.

On July 10, Raffone will embark on his latest effort to raise funds for research: alongside Freehold resident Joe Ippolito and Perth Amboy resident Martin Cintron, he will be walking 300 miles across four states in seven and a half days.

Raffone’s son James "Jamesy" Raffone was diagnosed at age four with Duchenne Muscular Dystrophy, a muscle-wasting disease that is 100 percent fatal and has no known cure. It’s a disease so rare it occurs only once in every 3,500 live births, resulting in its victims in wheelchairs by their early-teens. Most are breathing on ventilators by their mid- to late-teens, with most unable to see their early-twenties. Jamesy recently turned 12, the age when kids with Duchenne start losing the ability to walk. Related: Manalapan Dad To Walk From D.C. To NJ For Son With Rare Disease

The Manalapan-based JAR of Hope foundation, established in 2013 by Jim and Karen Raffone, works to raise awareness and funds to research the disease in what has become a race against time for a cure.

“These days, it’s extremely tough for charitable foundations,” Raffone said in a statement. “But these kids are still dying. So we have to be extremely creative in finding ways to research a cure.”

Raffone, Ippolito and Cintron will begin the “300 Miles Of Love" journey at the University of Massachusetts, the institution which monitors Jamesy’s disease. They’ll average 40 miles a day, camping out at night. Their last night, July 17, the three men will camp at All American Subaru in Old Bridge, one of 13 sponsoring Subaru dealerships along the route.

The walk will come to a festive finish the next day after the last 37 miles at Frogbridge Day Camp in Millstone with a Family barbeque featuring games and prizes.

“September 13 is the eighth anniversary of the day our son was diagnosed with this fatal disease we’d never even heard of,” Raffone said. “And all the doctors could tell us was ‘take him home and love him until he dies.’ Karen and I still hear those words ringing in our ears. So JAR Of Hope is making this walk in the hope that no parent, ever again, will have to hear those words.”

To learn more about JAR of Hope, visit www.jarofhope.org.