Foundation started by N.J. couple raises $165K for rare disease research – NJ.com

A foundation started by a Manalapan couple raised $165,000 for research for a cure to a rare disease with a 260-mile walk earlier this month.

JAR of Hope was created in 2013 by James and Karen Raffone when their son, James Anthony (Jamesy), was diagnosed with Duchenne Muscular Dystrophy at the age of four.

There is no cure for the disease, which causes those it afflicts to be wheelchair-bound and then progresses to them being hooked up on ventilators before a young and tragic death.

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," a statement from the foundation said. However, because Duchenne is so little-known, raising funds to research it is a huge challenge.

The Raffones then decided to start a charity walk they call, Walk For Their Lives, to help raise funds for Duchenne Muscular Dystrophy research.

When we first formulated the idea for Walk For Their Lives, our goal was to reach the $50,000-mark in donations," Jim Raffone said in the statement. "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 before - really touched our hearts.

The walk began in Washington D.C. on October 12 and participants averaged 34 miles a day - some of it through pouring rain and cold temperatures while holding their own backpacks and camping at night - until they reached Old Bridge a week later, officials said.

James is now 11, and is still walking at an age when most kids with the disease cannot and is participating in a research study financed by JAR Of Hope where he and other children receive infusions of a substance called JAR914, according to the statement. The results of the treatment have been very promising, but the cost to the foundation is $35,000 a month.

Jim Raffone said he was amazed at the generosity of the people who participated in this years walk.

For me, though, one of the most touching moments was when we got close to home," he said. "So many of our friends and neighbors were walking along with us to the finish line in Old Bridge.

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Chris Sheldon may be reached at csheldon@njadvancemedia.com.

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Foundation started by N.J. couple raises $165K for rare disease research - NJ.com