To save children dying from an extremely rare, always fatal disease, three men representing the JAR Of Hope foundation are undertaking a walk they call “300 Miles Of Love.”
Starting on July 10, JAR Of Hope Founder/CEO Jim Raffone, treasurer Joe Ippolito, and friend Martin Cintron will walk 300 miles across four states in seven-and-a-half days, according to a press release.
JAR Of Hope raises funds to research a cure for Duchenne Muscular Dystrophy, a disease so rare it occurs only once in every 3,500 live births.
Duchenne is a muscle-wasting disease, with no cure. These children are in wheelchairs by their early teens; breathing on ventilators by their mid- to late-teens; and nd in graves by their early twenties after suffocating.
“These days, it is extremely tough for charitable foundations,” said Raffone. “But these kids are still dying. So we have to be extremely creative in finding ways to research a cure.”
Jim and Karen Raffone started JAR Of Hope in 2013, after their then-4-year-old son, James Anthony (“Jamesy”), was diagnosed with Duchenne. Jamesy recently turned 12; the age when children with Duchenne start losing the ability to walk, according to the press release.
Raffone, Ippolito and Cintron will begin “300 Miles Of Love” at the University of Massachusetts – which monitors Jamesy’s Duchenne. They will average 40 miles a day, camping out at night.
Their last night, July 17, they will camp at All American Subaru in Old Bridge, one of 13 sponsoring Subaru dealerships along the route.
Their walk will come to a festive finish the next day – after the last 37 miles – at Frogbridge Day Camp in Millstone Township with a family BBQ with games and prizes.
This is the second big “walk” for JAR Of Hope. Last year Raffone and several team members did a 260-mile “Walk For Their Lives” to raise money for Duchenne research. And, like last year, JAR Of Hope is inviting area residents to participate for part of the route.
“Sept. 13 is the eighth anniversary of the day our son was diagnosed with this fatal disease we had 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.”