Officials from the JAR of Hope foundation have announced that the organization’s 260-mile “Walk For Their Lives” raised $165,000 to research a cure for Duchenne Muscular Dystrophy.
Led by founder/CEO James Raffone, and including parents of children born with the extremely rare illness, the walkers started on Oct. 12 from Washington, D.C., and arrived in Old Bridge a week later, according to a press release from JAR of Hope.
There is no cure for Duchenne Muscular Dystrophy, according to the press release.
JAR of Hope was born in 2013 when James and Karen Raffone’s 4-year-old son, James
Anthony (Jamesy), was diagnosed with Duchenne.
The Raffones were told by doctors to “just love him and wait for him to die,” but they decided instead to search for a cure. However, because Duchenne is so little known, raising funds to research the disease is a significant challenge, according to the press release.
“When we first formulated the idea for ‘Walk For Their Lives,’ our goal was to reach the $50,000 mark in donations. Then we decided to challenge ourselves by raising the bar to $100,000. But the contributions along the walk from people who reached into their pockets even though they had never heard of Duchenne have really touched our hearts,” Jim Raffone said.
The walkers averaged 34 miles a day – some of it through pouring rain and cold temperatures – while carrying their own backpacks. They camped out at night, according to the press release.
Jamesy Raffone is now 11 and is still walking at an age when most children with Duchenne cannot. He is one of a group of children from the United States and abroad who are participating in a research study financed by JAR of Hope, in which they receive infusions of a substance called JAR914, according to the press release.
So far, the results have been very promising, but the cost to the foundation is $35,000 a month, according to the press release.
Raffone said that was the reason for “Walk For Their Lives” – to finance research into the disease so that one day, no other parents will be told to “wait for him to die.”
“We are amazed at the generosity of people we met along the 260 miles, but for me, one of the most touching moments was when we got close to home. So many of our friends and neighbors were walking along with us to the finish line in Old Bridge,” he said.
