Names: Jim and Karen Raffone
The diagnosis: Their son, Jamesy Raffone, was diagnosed with Duchenne muscular dystrophy (DMD) in 2013. The progressive genetic disease breaks down muscle tissue, including heart muscle. It affects boys almost exclusively.
What doctors said: “I was told by seven doctors in three weeks 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.”
Possible solution: 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.
How the U helped: 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.
“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.
Why gifts matter: 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.
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