Stony Brook Children's Hospital is now a Certified Duchenne Care Center. The accreditation comes from Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne).
This accreditation makes Stony Brook the only certified center on Long Island and in the NYC metropolitan area; it is now one of only two centers in the whole of New York State.
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.
“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. 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”
Rachel Schrader, Vice President of Clinical Care and Education PPMD
Our Care Team
Treatment to improve mobility and to delay the onset of symptoms, requires a wide variety of treatments and specialist care. The Stony Brook center provides a nurse coordinator for each family to coordinate care across all disciplines, to minimize the stress associated with complex disease management, and to enable a faster and better flow of information among clinicians and our families.
Specialist care, including physiotherapy, is available in one facility to improve our families’ care experience.
The Stony Brook center has been supported from the outset by our most generous donor and her family, Jennifer Portnoy, whose extensive research, and intimate knowledge of Duchenne, has helped Stony Brook to develop a multidisciplinary center, designed to significantly improve the lives of families managing Duchenne care.
Jen Portnoy and her family have created a non-profit which advocates for and supports other Duchenne families, and is named for her son Javier, Hope for Javier.
Stony Brook Children’s Hospital was honored to welcome Agranil Das and his parents, and Ryann Asif with his mother; along with Jen Portnoy, her sister Anastasia and their step mother, to celebrate the new accreditation.