For Jim Raffone, every day since September 13, 2013, has felt like a race against time. The Manalapan resident has fought to keep his son, Jamesy, alive after doctors diagnosed the boy with a rare form of muscular dystrophy.
Two months after the diagnosis, Raffone dropped everything to found JAR of Hope, a nonprofit dedicated to raising funds and awareness for Duchenne muscular dystrophy (DMD), with the ultimate goal of finding a cure for his son and others.
“Our world stopped spinning when we fully wrapped our heads around the diagnosis and what the future would look like for my son,” says Raffone, who sold his construction company to put his full energy into JAR of Hope, named, in part, for Jamesy’s initials.
DMD is a fatal, progressive, muscle-wasting disease that disproportionately affects boys, who are typically diagnosed between the ages of four and six. Jamesy was four at the time of his diagnosis.
With fewer than 250,000 cases in the United States, DMD does not get the attention of more prevalent diseases. To raise awareness, Raffone started the 10 Push-ups for $10 campaign, traveling to gyms and fitness centers across the country, doing push-ups with Jamesy on his back to rouse support. The campaign took off, and since then, Raffone says, the nonprofit has become synonymous with some of the most intense physical-fitness challenges in the country.
In time, JAR of Hope garnered enough funds to initiate a first-of-its-kind study of an experimental treatment in 2019. Known as Operation Lifeline, the first phase of treatment, costing $35,000 per month, focuses on infusing a compound designated JAR-914 into five young boys, including Jamesy, in hopes of delaying the onset of symptoms and prolonging their lives. This January, the study, which Raffone says has had promising results, will enter phase two, expanding to include more boys across the country.
In addition, JAR of Hope has supported more than 50 families directly, leading campaigns to help them fund whatever they need—wheelchairs, accessible vans and more—to help their children.
Raffone acknowledges there’s a long way to go, but is pleased that JAR of Hope can provide families with the support and hope they need.
“When my son was diagnosed, the doctors told us to just go home and love my son, because there was nothing that could be done,” Raffone says. “Now, to have doctors tell parents that there’s a known therapy that could potentially help their child—not necessarily a cure, but a therapy to increase their quality of life—that’s what JAR of Hope was created for.”Click here to leave a comment