With today’s opening of the Duchenne Muscular Dystrophy Comprehensive Care Center, Stony Brook Children’s Hospital will play an integral role in the clinical care of DMD patients across the tri-state area.
Nearly one thousand boys across the tri-state area have been diagnosed with DMD. Fortunately, Stony Brook Children’s Hospital already has much of the infrastructure in place to support research on Duchenne Muscular Dystrophy. Now, with the support of a non-profit organization called Hope for Javier, Stony Brook Children’s can serve those children, and help assure that their care is provided in an integrated, holistic way.
DMD is characterized by progressive muscle degeneration and weakness, primarily affecting boys. Until recently, boys with DMD usually did not survive beyond their teen years. But now survival into their early 30s is more and more common. Though life expectancy overall is age 27, there are some cases of men with DMD who live into their 40s and 50s.
This will be a comprehensive center, including pediatric specialists from neurology, cardiology, pulmonary medicine, physical occupational and respiratory therapy, genetics, nutrition, social work, and additional support services.
Heading up the team is Dr. Susan Manganaro, who brings deep expertise and training in child neurology, clinical neurophysiology and sleep medicine. She will lead a group of highly skilled specialists who offer advanced, individualized and comprehensive care for our patients with muscular dystrophy and other neuromuscular diseases. Susan’s areas of expertise include neuromuscular diseases, such as Duchenne and other muscular dystrophies, nerve and muscle control disorders, neurophysiology, sleep medicine, nerve conduction studies, electromyography and sleep studies.
Our Clinic Coordinator will be a dedicated Nurse Practitioner who will help ensure that the needs of patients are being met and that information is shared between patients and providers. She will coordinate appointments so that our patients will see most specialists in a single day and in one location.
The center’s Social Worker will help identify resources to foster wellness and independence, and a vital communications link with schools regarding accommodations and support services. She will help families, advocating on their behalf and identifying services to ease the financial concerns of raising a child with a significant disability.
Stony Brook Children’s already meets many of the national standards of care for disease management of DMD patients --- including genetic counseling, physical therapy, nutrition, orthopedics and endocrinology. Our outpatient clinics have received Patient Centered Home Certification, which is a testament to our commitment to improve quality, safety, efficiency and effectiveness of care. And soon we will be home to a gleaming new Stony Brook Children’s Hospital when it opens in 2018.
The Duchenne Center is another terrific example of the unique role that Stony Brook Children’s plays as Suffolk County’s only academic medical center and as the premier AMC on Long Island. We are uniquely positioned to provide comprehensive care for our region’s youngest patients and their families. From Montauk to Manhattan and beyond. Stony Brook Children’s has more than 160 specialists representing all pediatric specialties. This new program extends our geographic reach and continues our development as a regional healthcare provider of choice for thousands of patients and their families across the tri-state region.
The difference the Duchenne Center will make in the lives of these patients and families cannot be emphasized enough. Our commitment to high-quality, patient-centered care and to groundbreaking medical research will be advanced through our specialized, interdisciplinary clinical team, which is well-equipped to meet the challenges of diagnosing, treating and managing neuromuscular diseases.