STATEN ISLAND, N.Y. — For Jim Raffone, the fight against Duchenne muscular dystrophy is not just a mission — it’s deeply personal. As the CEO and founder of JAR of Hope, he has spent years searching for a cure for the fatal childhood disease that affects thousands of families, including his own.
Jim and his wife, Karen, former Oakwood residents, have dedicated much of their lives to raising awareness and funding for research. Their drive comes from a place no parent wants to imagine: their 16-year-old son, James Anthony (“Jamesy”), is living with Duchenne.
“With no cure,” Jim Raffone said, “most kids with Duchenne muscular dystrophy will lose the ability to walk in their mid-teens. They’ll lose the ability to breathe without a ventilator by their early 20s.”…