'Time is against us': Half-marathon closing Route 9 to fund desperately needed drug trial

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.

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“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.

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Raffone said he’s hoping to raise $1 million with a field of at least 1,000 runners. The clinical study is expected to cost about $2 million; JAR of Hope has been fundraising for it since the study was approved in 2021.

“I would be blown away if we could get 3,000 people (to race),” Raffone said. “We can change the course of this disease by funding a clinical trial with one race.”

For more information on NJ Run4Hope, visit www.njrun4hope.com, email [email protected] 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 [email protected].

This article originally appeared on Asbury Park Press: Route 9 half-marathon helps fund Duchenne muscular dystrophy drug test