By GREGORY ZELLER //
Stony Brook Children’s Hospital has become a frontline fortress in the war against muscular dystrophy.
The hospital’s East Setauket-based Duchenne Muscular Dystrophy Comprehensive Care Center has earned Certified Duchenne Care Center accreditation from Parent Project Muscular Dystrophy, a national nonprofit spearheading the fight against Duchenne muscular dystrophy – the most common muscular dystrophy in children, affecting roughly 1 in 5,000 boys.
The distinction is rare: The East Setauket center, which opened in 2016, becomes the only CDCC on Long Island and only the second in New York State, joining the University of Rochester Medical Center’s Duchenne Muscular Dystrophy Clinic.
Duchenne – which affects all races and cultures and mainly targets boys – is a skeletal and heart-muscle disorder causing mobility, cardiac and respiratory issues. The progressive, multi-system muscle loss is created by irregularities in the dystrophin gene, preventing muscles from functioning properly.
Team effort: PNP Coordinator Dawn Dawn Dawson (left) and pediatric cardiologist Peter Morelli are part of a large, multidisciplined team.
Fighting back this nefarious, incurable foe requires the latest medical technologies, teams of multidisciplined professionals and plenty of open communication – all of which awaits at the Duchenne Muscular Dystrophy Comprehensive Care Center, according to pediatric cardiologist Peter Morelli, who leads the program alongside neurologist Simona Treidler and family nurse practitioner Dawn Dawson, coordinator of Stony Brook Children’s pediatric nurse practitioners.
“Treatment to improve mobility and to delay the onset of symptoms requires a wide variety of treatments and specialist care,” Morelli said Tuesday. “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.”
With Stony Brook Children’s Hospital checking all the right boxes – the Duchenne center features experts in neuromuscular disorders, cardiology, genetics, pulmonary medicine and other disciplines wielding a range of therapies, nutrition and support services – the designation of the first downstate CDCC was an easy call, noted Parent Project Muscular Dystrophy Vice President Rachel Schrader.
And it marks an important evolution for an estimated 1,000 patients and families throughout the New York City, New Jersey and Connecticut tri-state area, according to Schrader, who heads up the 501(c)3 organization’s clinical care and education programs.
“We have an extraordinary number of families affected by Duchenne living on Long Island or in the New York City area,” Scharder said in a statement. “Until now, they’ve had to travel quite a distance, even out of state, to access optimal Duchenne care.
“We are thrilled to add Stony Brook Children’s Hospital to our growing CDCC network,” the vice president added. “Not only because of the amazing work they are doing, but because of the access to care it creates for so many families.”
