Muscular dystrophy association designated care center MDA

The MDA Designated Care Center provides expert diagnostic and therapeutic care for a wide range of neuromuscular disorders. These include motor neuron diseases like sporadic and genetic forms of ALS, as well as various inherited neuropathies such as Charcot-Marie-Tooth disease and inherited amyloidosis. Additionally, the center treats neuromuscular junction disorders like Myasthenia Gravis, Lambert-Eaton syndrome, and inherited Myasthenias. A broad spectrum of muscle diseases is also covered, including conditions like Duchenne and Becker muscular dystrophies, myotonic dystrophy, Facioscapulohumeral dystrophy, limb-girdle muscular dystrophy, and inclusion body myositis.


Our diagnostic services are highly specialized, offering advanced techniques such as electromyography (including single fiber EMG), muscle biopsies, and expert genetic testing. The center provides both traditional and innovative therapies, including immunomodulation and enzyme replacement treatments. Patients also benefit from ongoing monitoring and expert rehabilitation advice from experienced providers at the Fixel Institute.

A key aspect of our work is the collaboration with Pediatric MDA to ensure smooth transitional care for young patients moving into adulthood. This includes specialized transitional clinics and access to emerging gene therapies for certain adult muscle diseases. Our goal is to maintain continuous, high-quality care for these patients as they age.

Alongside clinical care, the center is heavily involved in translational research, particularly in ALS and genetic neuromuscular diseases. This research includes natural history and biomarker studies, advanced MRI imaging methods, biobanking projects, and several interventional trials, many of which are first-in-human studies. Conditions such as ALS, myotonic dystrophy, facioscapulohumeral dystrophy, Becker muscular dystrophy, and Friedreich’s ataxia are the focus of these trials.

The MDA Care Center actively collaborates with other UF Health departments, including the Department of Physical Therapy, the Center for Neurogenetics, and the Powell Gene Therapy Center, which conduct cutting-edge research. UF Health is also an integral part of international research consortia dedicated to advancing treatments for these complex disorders.

Care team

The MDA Care Center team is composed of highly experienced specialists. This includes three neurologists with expertise in neuromuscular diseases, a physiatrist focused on rehabilitation, a nurse practitioner, and a clinic coordinator. Additionally, the team includes a large group of physical and occupational therapists, as well as specialists in speech and swallowing evaluations, to provide comprehensive care.

Research

Diagnoses of Muscular Dystrophy in a Veterans Health System

Early diagnosis of muscular dystrophy often disqualifies individuals from military service, but it’s unclear if veterans may later be diagnosed with milder forms of the disease. This study aims to determine how common muscular dystrophy is within a veterans health system.

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