Rare Disease Report

Using a Hyperbaric Chamber for Duchenne Muscular Dystrophy

DECEMBER 05, 2017
Jim Raffone
Jim Raffone, Founder and CEO of JAR of Hope, has done more than his share of research when it comes to Duchenne Muscular Dystrophy, the rare disease with which his son Jamesy was diagnosed.

It wasn’t until he started his awareness campaigns, though, that he came across the idea of a hyperbaric chamber, and the potential effectiveness of having Jamesy sleep in it. In this video, he talks about how the chamber was brought to his attention, the medical professionals who helped him put the process into play, and the science behind the therapy.

Raffone: The hyperbaric chamber is a device that was introduced to me when I started my push-up campaign; I started a campaign that was “10 push-ups for 10 dollars” and I tried to go to 79 gyms in 79 weeks. The reason for these seminars was to educate people of this deadly disease, but also to, hopefully, get people to help us. One person did stand up, and he asked me if I knew, or had ever heard of, the hyperbaric chamber; I was ignorant to it. I knew it was a device created to help burn victims that would help their skin cells rejuvenate a lot faster, but I didn’t know to what extent it could help the human body, as I do now.

Quickly, I sought out Dr David Dornfeld, who is world-renowned in his study. My son was diagnosed in September of 2013, and this was brought to my attention, believe it or not, by July of 2014, so rather quickly, there was early intervention for my son. He had just turned 5 – He was maybe 5-and-a-half – and once I had heard of this study, I completely understood what the therapy does for the human body. Most importantly, it helps the heart. We found that this device has rescued my son’s heart. It pumps out a greater volume of oxygenated blood, so it saved his heart and saved his pulmonary system. We’re finding – and it’s premature data – that his muscle tissue is rescued because he’s not like other kids his age. He can still run, he can still hop a little bit, and he’s not on any sort of drugs. The only other thing that he’s doing differently from all of these other children is he’s in this device. That’s why it’s so important for us to continue this study at the University of Minnesota; because with early intervention for an earlier generation of kids, if we can help them stay out of a wheelchair, that’s a huge difference. We’re making history. Other kids are in wheelchairs by 8. It can definitely make a huge difference for those kids. Then, if they can annex it with any sort of supplements or any sort of pharmaceutical drug that can help these kids, like these skipping compounds, which may help, the sky is the limit for what it can actually do to arrest this disease.


To learn more about JAR of Hope, visit the organization’s website: jarofhope.org.

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