NJ dad walking D.C. to Old Bridge to spotlight illness that could kill son

OLD BRIDGE — Long familiar to the New Jersey 101.5 audience, the Monmouth County-based JAR of Hope continues to raise awareness of Duchenne muscular dystrophy, an ultimately fatal affliction that affects some 20,000 boys in New Jersey.

Founder James Raffone's son, affectionately known as Jamesy, was diagnosed in 2013. He is now 11 years old and is still able to walk.

By age 15, most who suffer from Duchenne are rendered quadriplegic. By 19, they develop serious trouble breathing.

Determined not to let the disease take Jamesy's legs, Raffone and four others are embarking on a 260-mile walk for charity on Monday, starting in Washington, D.C. They aim to finish the trek on the afternoon of Monday, Oct. 19, at Lombardi Field in Old Bridge.

"This walk is symbolic of something that I hope one day he'll be able to do, because right now statistically, the disease will render a child between the ages of 9 and 11 in a wheelchair," Raffone said.

The official endpoint of the eight-day walk is All-American Ford in Old Bridge, and Raffone's group has made arrangements to stop at six other Ford dealerships along the route.

Raffone said Duchenne remains virtually unknown despite its being present in boys around the world for centuries.

"Two hundred years," he said. "It's claimed the lives of every child that has had this disease. And we're aiming to stop it, and that's why this walk came about."

For more information, visit jarofhope.org.

Patrick Lavery is New Jersey 101.5's afternoon news anchor. Follow him on Twitter @plavery1015 or email patrick.lavery@townsquaremedia.com.