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By Carol Ann Benanti | benanti@siadvance.com STATEN ISLAND, N.Y. — Jim Raffone, founder/CEO of JAR of Hope ( https://www.jarofhope.org/ ), will play host to a unique half-marathon to save children with a rare and fatal disease. It’s the New Jersey Run 4 Hope Half-Marathon set to take place on Sunday, Oct. 6 in a unique setting – Route 9 in Eastern, N.J. All proceeds will go toward funding a cure for Duchenne muscular dystrophy. And people are already signing up. “We’ve taken great pains to plan unique events over the years,” said Raffone who’s originally from Oakwood. “This race will be in a beautiful setting with picturesque landscapes and roads, and sections of Rt. 9 will open and close accordingly. We’re thankful for the support of Sen. Henry, Administration Fire Chief of Old Bridge Bob Verney and all the mayors of the five Municipalities we run through. And every cent will go to save these kids.” The event will start at All American Ford in Old Bridge and end at iPlay America in Freehold. But the real winners will be kids suffering with Duchenne muscular dystrophy. Raffone has dedicated his life to raising funding for a cure for Duchenne md, ever since his son James Anthony (“Jamesy”), now 15 and in a wheelchair since age 12, was diagnosed at 4 years-old. “Like most people, Karen and I had never heard of Duchenne muscular dystrophy,” Raffone said. “And the doctors told us ‘just take Jamesy home and love him until he dies.’ But that didn’t sit well with us…because no parent should have to just wait for their child to die. So we sold our home-improvement business and founded JAR of Hope.” To raise funds for a cure, Raffone, 53, has climbed on Mount Everest. He’s run in more marathons than he can count, and in blistering heat and freezing cold in week-long events like the Alps to Ocean in New Zealand and the Grand2Grand Ultra in Arizona/Utah. He’s even been in three amateur boxing matches at the age of 50 – and won. “People are really excited about this race,” Raffone said. ““Our goal is to save the first child. And then to save all the rest.” Two hundred years after its discovery, there is still no cure for Duchenne muscular dystrophy, a muscle-wasting disease occurring only once in every 3,500 live births, mostly in boys. Some kids are in wheelchairs as early as 9 year-old and on ventilators by their mid-teens. Those interested in registering for the race may do so at https://www.jarofhope.org/ or NJ Run 4 Hope Half Marathon (jotform.com)
Over the past decade, in a quest to fight the deadly disease that ails his son, Manalapan’s Jim Raffone has trekked to Mount Everest base camp , built a record-setting Lego chain , appeared on a special-edition Father’s Day card , and rung the closing bell of the New York Stock Exchange. Next up: Holding a half-marathon on Route 9. It took several years, but Raffone has lined up approvals for the 13.1-mile race, dubbed “NJ Run 4 Hope,” which will pass through five municipalities on the morning of Sunday, Oct. 6. Most of the course is along Route 9 South, which will shut down and reopen gradually as the race unfolds. Proceeds will fund a clinical trial for Duchenne muscular dystrophy — a rare and fatal genetic disorder that causes progressive muscle weakness. Jim’s son James (Jamesy) Raffone was diagnosed with Duchenne at age 4 . He’s now 15 and a freshman at Howell High School. The life expectancy for Duchenne patients is generally in the mid-20s. “Right now time is against us, so with this happening and with the help of all the mayors, it’s been a godsend,” Jim Raffone said. “I can’t thank everyone enough.” This is believed to be the first half-marathon or marathon taking place mostly along Route 9. The race will begin at All American Ford in Old Bridge and proceed south through Marlboro and Manalapan, with a loop through Freehold Borough before ending at iPlay America in Freehold Township. “We’re going to have a huge celebration and a business expo at iPlay,” Raffone said. JAR of Hope, the nonprofit the Raffone family launched in 2014, has been granted approval by the U.S. Food and Drug Administration to begin clinical trials on an investigational drug to treat Duchenne. The trials will be conducted by researchers at the University of Florida. “We’re going to have a huge celebration and a business expo at iPlay,” Raffone said. JAR of Hope, the nonprofit the Raffone family launched in 2014, has been granted approval by the U.S. Food and Drug Administration to begin clinical trials on an investigational drug to treat Duchenne. The trials will be conducted by researchers at the University of Florida. For more information on NJ Run4Hope, visit www.njrun4hope.com , email info@njrun4hope.org or call 732-414-6670. Jerry Carino is community columnist for the Asbury Park Press, focusing on the Jersey Shore’s interesting people, inspiring stories and pressing issues. Contact him at jcarino@gannettnj.com. T o view the entire article, please click here .
