Representatives of the JAR of Hope foundation will take a 260-mile “Walk For Their Lives” from Washington, D.C., to Old Bridge in October to raise awareness of the little-known, but fatal, childhood disease they are fighting.
JAR of Hope was established in 2013 by James and Karen Raffone of Manalapan when
their 4-year-old son Jamesy was diagnosed with Duchenne Muscular Dystrophy, a very rare muscle-wasting disease with which children are born, according to a press release from the organization.
There is no cure. Individuals who have the disease often pass away by their early 20s, according to the press release.
“Walk For Their Lives” will start in Washington, D.C., on Columbus Day, Oct. 12.
On Oct. 19, the participants will walk the last 26 miles, starting at Sportika in Manalapan, walking to the last sponsored checkpoint at All American Ford in Old Bridge, and the finish line at Old Bridge High School.
At the high school, the walkers will be greeted by Old Bridge Mayor Owen Henry and Congressman Chris Smith (R-NJ).
“We will be walking 33 to 35 miles a day,” Jim Raffone said, “and camping out each night in sleeping bags. No showers, no amenities. We are inviting the central New Jersey community to walk along with us for portions of the 26.2 miles on the last day.”
The walk will be led by Raffone and JAR of Hope Treasurer Joe Ippolito, and sponsored by All American Ford of Old Bridge. The goal is to raise $50,000 toward a cure, according to the press release.
“We will be starting at the Rayburn House Office Building in Washington, D.C.,” Ippolito said, “and we are 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 JAR of Hope pays $35,000 a month for the five participants in the study, according to the press release.
The “Walk For Their Lives” route will wind through Maryland and Pennsylvania before reaching New Jersey, and stops will include municipalities such as Laurel and Baltimore in Maryland; West Chester and Lancashire in Pennsylvania; and Manalapan and Old Bridge.
“We will be driving down to Washington with our families,” Raffone said, “and then they will drive home while we do the walk. We are hoping 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.”
