Manalapan Dad Raises $165K In Walk For Children With Rare Disease

MANALAPAN, NJ - Manalapan resident Jim Raffone recently completed a 260-mile walk up the east coast of the United States, all in an attempt to raise funds for potentially lifesaving treatment for his 11-year-old son.

Dubbed the "Walk For Their Lives", the event began on Oct. 12 in Washington D.C. and terminated in Old Bridge, New Jersey on Oct. 19. The walkers averaged 34 miles a day – some of it through pouring rain and cold temperatures – while carrying their own backpacks and camping out at night. Although two of the initial six walkers had to drop out of the event, a JAR of Hope Ragnar team of runners helped motivate the team by running for an extended period of time through the nights.

The JAR of Hope team completed the journey on Monday, Oct. 19 at Lombardi Field at approximately 1:40 p.m., greeted by a finish line ceremony and appearances from Congressman Chris Smith and Old Bridge Mayor Owen Henry.

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

Raffone’s son Jamesy, now 11, was diagnosed with Duchenne Muscular Dystrophy (DMD), a rare genetic disorder, at age 4. Although the young Manalapan resident is still walking at an age when most children with DMD cannot, the disease is still 100 percent fatal. Most individuals with diagnosis typically don't live past their early twenties.

“When we first formulated the idea for "Walk For Their Lives," our goal was to reach the $50,000-mark in donations,” Raffone said in a news release. “Then we decided to challenge ourselves by raising the bar to $100,000. But the contributions along the walk - from people who reached into their pockets even though they had never heard of Duchenne before - really touched our hearts.”

Due to funding from JAR of Hope, Jamesey now serves as one of several kids from all over the world participating in a research study where they receive infusions of a substance called JAR914. The results have been promising, according to Jamesy’s father in an interview with Patch last month. However, the foundation still costs $35,000 per month to operate.

Through the “Walk For Their Lives” event, the team raised $165,000 to assist the JAR of Hope foundation fund research, treatment programs and operational costs.

Raffone says the walk was intended to finance research into the “inhumane” disease, so that eventually no other parents will be told to “wait for him to die.”

“We are amazed at the generosity of people we met along the 260 miles,” Raffone said. “For me, though, one of the most touching moments was when we got close to home. So many of our friends and neighbors were walking along with us to the Finish Line in Old Bridge.”

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