Raffone serves as the founder and CEO of JAR Of Hope, a nonprofit founded in 2013 to seek a cure for Duchenne Muscular Dystrophy (DMD), the muscle-wasting disease that Raffone’s son Jamesy was diagnosed with at age four. It is one hundred percent fatal and those with a diagnosis typically don’t live past their early twenties.
When Jamey’ parents found out there was no cure for DMD, they started JAR Of Hope to raise funds for research.
“But now, because of COVID-19, we can’t hold fund-raising events,” Raffone said.
The Manalapan resident is no stranger to a challenge. In order to raise additional funding for JAR of Hope, Raffone has ran numerous marathons and participated in week-long “Ultra” races in mountain ranges in the U.S. and abroad. He’s completed some of the hardest races on the planet, ranging from a seven-day 171-mile run through the desert to a 12-day trek throughout New Zealand and Australia. He’s the owner of six world records in his age group.
Most recently, Raffone walked from Washington D.C. to Old Bridge to fundraise during COVID-19, a global health crisis which has uprooted traditional galas, golf outings and other traditional methods of raising money. Read more: Manalapan Dad To Walk From D.C. To NJ For Son With Rare Disease
When Raffone heard that Official Celebrity Boxing was staging a boxing event at the Showboat Hotel in Atlantic City, he reached out to its Founder/CEO, Damon Feldman. Feldman – who also has a young son – was touched by Raffone’s story and offered the Monmouth County local an opportunity to box on the undercard of a match between former NBA star Lamar Odom and singer Aaron Carter.
“This match offers an opportunity to increase awareness of this deadly childhood disease,” Raffone said. “And, because of COVID-19, we have to take advantage of every opportunity.”
Raffone is currently training with professional boxer/trainer Imamu Mayfield at Freehold Boxing & Fitness. Mayfield reports that his student already has the tools for success in the ring and is progressing nicely.
“For one thing, he has a burning motivation to help these kids,” Mayfield said. “He’s already an athlete, with world records. He’s been training hard. And he’s a big man…with a very big heart.”
Tickets are available at email@example.com. For more information, visit jarofhope.org.