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Muscular Dystrophy

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What is Muscular Dystrophy?

Muscular dystrophy refers to a group of inherited diseases of the muscles. These diseases cause muscle weakness and wasting away of muscle tissue.

The most common types of muscular dystrophies are:

UR Medicine's Treatments for Muscular Dystrophy

Our comprehensive, multidisciplinary Neuromuscular clinic team focuses on all aspects of neuromuscular disease in adults and children, providing diagnosis and treatment using:

  • Newborn screening
  • Genetic confirmation
  • Genetic and family counseling
  • Gene therapy
  • Infusion therapy
  • Physical therapy
  • Prevention and management of secondary symptoms and complications, including cardiac, respiratory, behavioral, endocrine (glands and hormones), and bone health
  • Access to clinical trials
  • Coordination of care with schools and other providers

Patient Stories

No Longer a Death Sentence - Battling Duchenne MD

Justin DeCross was born with Duchenne Muscular Dystrophy. No longer a death sentence, UR Medicine providers are now thinking of this more like a chronic disease where they can make an impact on the quality of their patients' lives. Hear about Justin's story.

What Sets Us Apart?

Our team of experts specialize in what’s needed to care for all forms of adult and childhood muscular dystrophy. We coordinate care tailored to the needs of patients and families, in partnership with the Muscular Dystrophy Association. Our team also evaluates and treats patients with neuromuscular diseases not covered by the MDA. 

UR Medicine is home to one of six NIH-funded Wellstone Muscular Dystrophy Cooperative Research Centers, and our clinicians are active in research, serving as principal investigators for national and international multi-center trials. Their work includes investigating the best treatment of patients with Duchenne Muscular Dystrophy, as well as education and advocacy involving all neuromuscular diseases. Our Facioscapulohumeral Muscular Dystrophy (FSHD) and Myotonic Dystrophy Research Team focuses on advancing therapies for people with Myotonic Dystrophy type 1 and type 2, and FSHD. We cover the full spectrum of research, from studies in the lab to therapeutic trials in the clinic research center.

Our studies aim to understand the disease mechanism better, find ways to measure disease progression, expand access for patients to research and care, and test new drugs in the lab and the clinic. As a site, we participate in several clinical trials, testing new drugs targeting the root cause of these diseases. We are home to the National Registry for DM and FSHD, which connects patients with DM and FSHD with researchers.

The UR Duchenne Muscular Dystrophy Clinic, the only center focusing on Myotonic Dystrophy Research since its inception in 2003. provides patients with care in order to improve the quality of life of children, adolescents and adults affected by the condition. We provide a team of experienced physicians, nurse practitioners, and physical therapists in all specialties needed to best care for Duchenne Muscular Dystrophy, including a friendly and supportive atmosphere and coordinated care that is highly accessible for families.

Support the MDA Clinic

Your donation, no matter the size, brings us closer to life-changing discoveries and treatments. For someone living with a neuromuscular disorder, your support means more than just hope – it means a chance at a fuller, more independent life.

Providers

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Locations

We serve you in the Rochester metropolitan area and surrounding region.

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3 locations

Neurology - Rochester
Part of Strong Memorial Hospital

Ambulatory Care Center at Strong Memorial Hospital
601 Elmwood Avenue, 1st Floor
Rochester, NY 14642

Neuromuscular Electromyography and Nerve Conduction (EMG) Lab - Brighton

Clinton Crossings, Building C
919 Westfall Road, Suite 210
Rochester, NY 14618

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