Stony Brook Children’s Hospital is now a Certified Duchenne Care Center (CDCC). The accreditation comes from Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (DMD). This accreditation makes Stony Brook the only certified center on Long Island and in the NYC metropolitan area, and one of only two centers in New York State.
According to PPMD, Duchenne is the most common muscular dystrophy in children, affecting around one in every 5,000 boys. It is a progressive disorder affecting both skeletal and heart muscles, causing decreasing mobility, and often cardiac and respiratory issues. Duchenne affects mainly boys, and its impact affects all races and cultures. The opening of the Duchenne Care Center at Stony Brook Children’s Hospital marks a new era in the level of care available to patients in the tri-state area of New York, New Jersey and Connecticut.
“We have an extraordinary number of families affected by Duchenne living on Long Island or in the New York City area, and until now, they’ve had to travel quite a distance, even out of state, to access optimal Duchenne care,” said Rachel Schrader, vice president of clinical care and education at Parent Project Muscular Dystrophy. “We are thrilled to add Stony Brook Children’s Hospital to our growing CDCC network not only because of the amazing work they are doing, but because of the access to care it creates for so many families.”
The Duchenne program at Stony Brook Children’s Hospital is led by program director Dr. Peter Morelli, neuromuscular specialist Dr. Simona Treidler and PNP coordinator Dawn Dawson.
“Treatment to improve mobility and to delay the onset of symptoms requires a wide variety of treatments and specialist care,” said Dr. Morelli. “At Stony Brook Children’s Hospital, we provide individualized coordinated care for each family across all medical disciplines to minimize the stress associated with complex disease management, and to enable a faster and more efficient dissemination of information among all involved clinicians and our families.”
For more information about Stony Brook’s Duchenne Care Center, visit the website.