260-mile 'Walk for their Lives' raises awareness for Duchenne Muscular Dystrophy

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Monday, October 19, 2020
'Walk for their Lives' raises awareness for rare, deadly illness
Toni Yates has more on an eight-day, 260-mile walk that's raising awareness for a rare and deadly childhood illness.

OLD BRIDGE, New Jersey (WABC) -- An eight-day 260-mile walk raising awareness for a rare and deadly childhood illness came to its conclusion in New Jersey Monday.

The JAR of Hope Foundation's "Walk for their Lives" began in Washington D.C. last week and marched to Old Bridge to raise money Duchenne Muscular Dystrophy.

Duchenne usually affects boys and causes the body's muscles to weaken over time and is eventually fatal.

There is no cure, and children born with Duchenne are generally in wheelchairs by their early-teens and breathing through ventilators by their late-teens.

Progressively, they will have problems breathing and walking, and eventually, muscles that aid in breathing and the heart will stop working.

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JAR Of Hope was established in 2013 by James and Karen Raffone, of Manalapan, when their then-4-year-old son, James Anthony "Jamesey" was diagnosed with Duchenne.

"It's a never-ending battle," James Raffone said. "There's not a cure yet, there's not even a therapy."

"Walk for their Lives" began in DC this past Monday with a JAR of Hope contingent of a dozen, led by James Raffone and Treasurer Joe Ippolito, along with parents of kids with Duchenne.

"This is our boys, and they don't have an option," said Martin Cintron, whose son, Martin Jr., has Duchenne. "They can't say no. They can't turn it off."

They walked during the daytime hours, carrying backpacks, and camped out at night.

On Monday, they walked the final 24 miles from Sportika in Manalapan Township to the last sponsored checkpoint at All American Ford Old Bridge, followed by a 2-mile walk to Lombardi Field in Old Bridge, where they were greeted in a special ceremony by Mayor Owen Henry and Congressman Chris Smith.

"You get him in the room, you can't say anything but yes, what a drive, what a great man," Smith said.

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"We'll have walked 33-35 miles a day through D.C., Maryland, Pennsylvania and New Jersey, with heavy backpacks and sometimes in driving rain," James Raffone said. "And we're inviting Central Jersey folks to walk along with us for the last mile or two from All American Ford Old Bridge to Lombardi Field on Monday."

"Jamesy" is now 11 and participating in a year-long Duchenne study called Operation Lifeline.

The family says the results are encouraging but the costs staggering, and JAR of Hope pays $35,000 a month for the five participants from the U.S. and abroad.

"We can't wait to get back home to Central Jersey," James Raffone said. "Local folks have been very supportive, and it would be great if some of them joined us for the walk to Lombardi Field."


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