Dad on a mission
When Jamesy Raffone was diagnosed with Duchenne muscular dystrophy (DMD) in 2013, his parents, Jim and Karen Raffone, were devastated. They felt helpless.
“I was told by seven different doctors in three weeks—because I got that many second opinions—that there was nothing they could do for my son. ‘Go home and love him,’” Jim Raffone recalls. “That didn’t sit well with me.”
DMD is a progressive genetic disease that breaks down muscle tissue over time, including that of one very important muscle: the heart. It affects boys almost exclusively and cuts their lifespan short. Historically, those with DMD didn’t live much past age 20, but medical advances have helped to extend their lives into their 30s or even 40s.
That’s tough for the Raffones to swallow. So within two months of Jamesy’s diagnosis, Jim Raffone had created an organization to raise money for research and named it JAR of Hope in his son’s honor.
One of his first fundraising efforts was a “10 pushups for $10” campaign at a local gym chain near his home in Manalapan, New Jersey. “I tried to tie the muscle wasting disease to the gym environment, where everybody goes to build muscle tissue,” he says.
The effort was so well received that he followed it up with a world-record attempt for the largest group of people doing pushups at one time. “From there, it just caught on fire,” he says.
Meanwhile, the Raffones had found a doctor for Jamesy who suggested that oxygen therapy might be beneficial. So they built an approximately 3-by-7-foot hyperbaric chamber inside their home, and they say it appears to be helping.
But there isn’t much science behind it—yet. “We needed to study this because I’m spending … eight hours a day in this chamber with my son,” Raffone says. “Am I spending my son’s life now in the right way?”
Raffone started a nationwide search to find people doing research on oxygen therapy’s effects on cardiac, pulmonary, and motor function. That’s how he found University of Minnesota assistant professor DeWayne Townsend, D.V.M., Ph.D., who had shown that mice bred to model muscular dystrophy that spent time in a low-oxygen environment suffered a surprising amount of heart damage.
Today JAR of Hope has given more than $220,000 for a new University study to thoroughly measure skeletal muscle, respiratory, and cardiac function in mice exposed to “normobaric oxygen-rich” (meant to simulate what a person would get through an oxygen mask) and hyperbaric environments.
If there appears to be a benefit at the end of the two-year mouse study, he adds, it would be relatively easy to move into a clinical trial involving people who have DMD, because oxygen therapy is already used in the medical field and no additional approval would be required by the U.S. Food and Drug Administration.
Until then, Jim and Jamesy Raffone will continue with their own hyperbaric chamber experiment at home, watching movies, playing Minecraft, and building Legos together.
“I’m just a desperate father trying to save my son.”