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Major university may do research inspired by NJ boy with rare fatal disease

Manalapan, NJ (February 29, 2016) – Six-year-old James Anthony (“Jamesy”) Raffone may not know it. But the experimental treatment he’s receiving for his very rare, fatal disease may be sparking a new research study at the University of Minnesota.

Jamesy has a mutation of a disease called Duchenne Muscular Dystrophy. This mutation is so rare that only 120 others in America – all little boys – have it. There is no cure. So these boys will be in wheelchairs by their early teens. And in their graves by their early 20s.

Jamesy’s father is Jim Raffone, founder of JAR of Hope foundation, which raises money to fight Duchenne. If JAR of Hope can raise $85,000, the University of Minnesota will start a two-year study on the effectiveness of hyperbaric oxygen chambers in the treatment of Duchenne. The impetus for this study was the results of Jamesy’s treatment with this chamber since January 2015, under the direction of Dr. Dave Dornfeld, an Osteopathic Medical Physician in Middletown.

“Hyperbaric therapy allows for an increased concentration of oxygen to be delivered through the tissues, and that’s what allows for tissue repair,” says Dr. Dornfeld. “And after 15 months with this treatment, Jamesy is showing more improvement than the other boys with Duchenne in his group.”

When their son was diagnosed in September 2013, and they were told there was no cure, Jim and Karen Raffone created JAR of Hope (www.jarofhope.org) to find a cure for these boys.

The University of Minnesota study will use mice with Muscular Dystrophy as its subjects. But the implications for boys with Duchenne are enormous.

“There’s no doubt we’re making progress,” says DeWayne Townsend, a research physiologist who will direct the new study. “Right now, thousands of scientists around the world are working to discover a cure for Duchenne. And from these discoveries will emerge a cure.”

For Jim and Karen Raffone, that day can’t come soon enough.

“We are under a death sentence,” Jim Raffone says. “And the clock is ticking. It’s the ultimate nightmare for any parent. We need to raise $85,000 to give these boys a chance at life.”

I’ll follow up in a few days. In the meantime, if you’d like to speak with Jim Raffone or the doctors/researchers involved in Jamesy’s treatment, please feel free to contact me at (754) 307-5061 or steve@winstoncommunications.com.

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