Dad on a mission
When Jamesy Raffone was diagnosed with Duchenne muscular dystrophy (DMD) in 2013, his parents, Jim and Karen, were devastated.
“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, including heart muscle. It affects boys almost exclusively.
The Raffones found a doctor near their home in Manalapan, New Jersey, who suggested that oxygen therapy might be beneficial. So they built a 3-by-7-foot hyperbaric chamber inside their home, and they say it appears to be helping their son.
But there isn’t much science behind this treatment—yet. In his search for researchers to study the effects of oxygen therapy, Raffone found the University of Minnesota’s DeWayne Townsend. Townsend had shown that mice bred to model muscular dystrophy that spent time in a low-oxygen environment suffered a surprising amount of heart damage.
Now JAR of Hope, an organization Raffone created to raise money for research in his son’s honor, has given the U more than $220,000 to study skeletal, muscle, respiratory, and cardiac function in mice exposed to oxygen-rich environments.
“We hypothesize that by increasing the oxygen available, it’s possible to slow the progression of heart muscle degeneration in patients afflicted with DMD,” Townsend says.