MANALAPAN – James Anthony (“Jamesy”) Raffone may not know it, but the experimental treatment he is receiving for his very rare, fatal disease may be sparking a new research study at the University of Minnesota, according to a press release.
Jamesy, 6, has a mutation of a disease called Duchenne Muscular Dystrophy. This mutation is so rare that only 120 other people in America – all little boys – have it. There is no cure for the disease.
Jamesy’s father, Jim, is the 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, according to the press release. The impetus for this potential study is the result 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 is what allows for tissue repair,” Dornfeld said. “After 15 months with this treatment, Jamesy is showing more improvement than the other boys with Duchenne in his group.”
The University of Minnesota study would use mice with muscular dystrophy as its subjects, according to the press release.
“There is no doubt we are making progress,” said 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.”
