Officials from JAR Of Hope foundation will take a 260-mile “Walk For Their Lives” from Washington, D.C. to Old Bridge, NJ, to raise awareness of the little-known – but fatal – childhood disease they’re fighting.
JAR Of Hope was established in 2013 by James and Karen Raffone of Manalapan, NJ, when their four-year-old son, James Anthony (“Jamesy”) was diagnosed with Duchenne Muscular Dystrophy, a very rare muscle-wasting disease with which children are born.
There is no cure. These children are in wheelchairs by their early-teens. Breathing through ventilators by their late-teens. And in graves by their early-twenties. After suffocating to death.
“Walk For Their Lives” will start in Washington, D.C. on Columbus Day, October 12. It will take eight days to reach the last sponsored checkpoint at All American Ford Old Bridge and then the finish at Old Bridge High School, where Mayor Owen Henry and Congressman Chris Smith will be waiting to greet the JAR Of Hope officials.
“We’ll be walking 33-35 miles a day,” Jim Raffone says, “and then camping out each night in sleeping bags. No showers, no amenities. And we’re inviting the Central Jersey community to walk along with us for portions of the 26.2 miles on the last day.” (JAR Of Hope: 732-414-6670)
The walk will be led by Raffone and JAR Of Hope Treasurer Joe Ippolito, and sponsored by All American Ford of Old Bridge. And the goal is to raise $50,000+ toward a cure.
“We’ll be starting at the Rayburn House Office Building in D.C.,” Ippolito says, “and we’re hoping people will join us – even for a little bit – along the way, to show support for our efforts to find a cure for this horrible disease that takes away children.”
“Jamesy” Raffone is now 11, and participating in a year-long Duchenne study called Operation Lifeline. The results are encouraging. But JOH pays $35,000 a month for the five participants.
The “Walk For Their Lives” route will wind through Maryland and Pennsylvania before New Jersey, and stops will include municipalities such as Laurel and Baltimore in Maryland; West Chester and Lancashire in Pennsylvania; and Manalapan Township and Old Bridge in New Jersey.
“We’ll be driving down to Washington with our families,” Jim Raffone says, “and then they’ll drive back home while we do the walk. And we’re really hoping that folks in New Jersey will walk alongside us for a while. People in our state have been really supportive. And these days, we appreciate that support more than ever.”