Spinal Muscular Atrophy (SMA) Care Center
The University of Rochester SMA Care Center mission is to provide most up to date multidisciplinary care to patients with SMA of all ages and at all stages of disease, including newborns diagnosed through the New York State Newborn Screening Program. Our goal is to make a positive impact on the quality of life of infants, children, adolescents and adults affected by SMA by providing a team of experts in all specialties needed to best care for SMA, a friendly and supportive atmosphere, and a coordinated care that is highly accessible for families. We focus on all aspects of disease including:
- A timely diagnosis with genetic confirmation and genetic and family counseling
- Treatment with all currently FDA approved drugs for SMA (Spinraza, Evrysdi and Zolgensma)
- Prevention and management of secondary symptoms and complications, including respiratory, nutrition, and bone health
- Access to clinical trials
- Coordination of care with schools and other providers.
Our specialized SMA team include Neuromuscular Neurologists, Pulmonologists (pediatric and adult), Physical Therapists, Nurses, Nurse Practitioners, genetic counselor, social worker, orthopedic surgeons (pediatric and adult), nutritionist/GI, clinic coordinator, specialty pharmacy.
For additional SMA information and patient resources, see: CureSMA.