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UTSW and Children’s Health Recognized For Muscular Dystrophy Work

It is the first of its kind in the state of Texas, and 29th nationwide.
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A collaboration between UT Southwestern and Children’s Health has been recognized for its work toward finding a cure for Duchenne muscular dystrophy. The program is now a Certified Duchenne Care Center (CDCC) by Parent Project Muscular Dystrophy (PPMD), a nonprofit that focuses on finding a cure fore the disease.

The program is just the 29th in the country and the only one in Texas. “We are thrilled. This has been a goal for a long time and now we have it,” says Dr. Susan Lannaccone, associate director of the National Institutes of Health-funded Wellstone Muscular Dystrophy Cooperative Research Center at UT Southwestern and co-director of the MDA Pediatric Care Center at Children’s Health via release. “This is public recognition on a national basis for the excellence of our program. It means we are considered by a large community of DMD families to be equal to other leading centers.”

The certification helps communicate to families that the program meets all the national standards, a reassuring piece of information as they navigate a complicated health condition. Duchenne muscular dystrophy is a genetic disorder that causes muscle deterioration resulting in frequent falls, difficulty running, learning disabilities, and other physical limitations. There is no cure, but physical therapy and medications can have an impact. About one in 3,500 boys are born with it, though girls can have it in rare cases.

The group is currently working on eight industry sponsored clinical trials to fight the disease, while around 300 patients with Duchenne’s have been referred to the physicians involved in the project.

“The team in Dallas has shown immense dedication to Duchenne care and growth in their Duchenne program over the last several years, and has worked closely with the CDCC Certification Committee to meet the robust standards of certification,” said Kathi Kinnett, PPMD’s clinical care advisor  via release. “We’re thrilled to certify their center and recognize the great work they are doing for the Duchenne community in Texas.”

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