Neuromuscular Medicine Program Contact number | 202-476-6193

Treating neuromuscular diseases in children and teens requires a high level of compassion, care and expertise. The Neuromuscular Medicine Program at Children’s National Health System leverages the expertise of an interdisciplinary team, cutting-edge research and innovative technologies to care for a wide range of neuromuscular conditions.

Why Choose Us

At the Neuromuscular Program, we treat children from infancy to age 21 and we’re dedicated to giving our patients the highest quality of life in and out of a clinical setting. We offer support for social, educational and emotional difficulties that often accompany neuromuscular conditions. We also offer:

  • Specialty programs and clinics. Our team offers comprehensive neuromuscular care tailored for your child through our numerous specialty clinics dedicated to specific conditions.
  • The latest research and treatment options. Our team is involved in ongoing research studies on neuromuscular diseases, including Duchenne muscular dystrophy, Becker muscular dystrophy, congenital muscular dystrophy and spinal muscular atrophy. These studies are designed to identify new treatment options for patients and improve medical research. We translate these findings into improving clinical care for your child. We are also one of only a few treatment programs in the country offering SpinrazaTM, a promising new drug for spinal muscular atrophy. 
  • A passion for understanding and treating neuromuscular diseases. Our nationally and internationally recognized team members are actively involved in organizations such as APTA, American Thoracic Society, Global Tracheostomy Collaborative, Metropolitan District of Columbia Thoracic Society, Child Neurology SocietyCINRG, Cure CMD, World Muscle Society and American Society of Gene and Cell Therapy (ASGCT).

Services We Provide

Our Neuromuscular Program offers the following services: 

  • Comprehensive clinical evaluations
  • Genetic counseling

We also offer treatments and diagnostic testing such as:

  • Braces, splints, Angel Arms and WREX
  • Leading-edge medications like Spinraza™, a promising new drug to treat spinal muscular atrophy, and Exondys 51 to treat Duchenne muscular dystrophy
  • Nutrition counseling
  • Physical therapy
  • Positioning aids to help children sit, stand or lie down
  • Psychological counseling
  • Speech and swallowing therapy
  • Electrodiagnostics (EMG)/nerve conduction studies
  • Muscle ultrasound
  • Skin and muscle biopsy
  • Genetic testing (next generation sequencing and whole exome sequencing)
  • Serologic testing (blood testing)
  • Augmentative communications
  • Surgical interventions
  • Pulmonary function studies
  • Echocardiogram/cardiac MRI
  • Durable medical equipment
  • Occupational therapy

Specialized Programs

To expedite evaluation, diagnosis and treatment, our specialists operate three clinics:

  • The Neuromuscular Clinic is the gateway to our program. Specialists review medical histories and perform detailed clinical exams. Additional blood work, muscle ultrasound or MRI (magnetic resonance imaging), muscle biopsy, nerve conduction studies, electromyograms and genetic testing may follow to determine an underlying diagnosis.
  • The Muscular Dystrophy Association (MDA) Care Center is a one-stop clinic featuring interdisciplinary care for neuromuscular diseases. In a single visit, children diagnosed with muscular dystrophies are attended to by experts in neurology, pediatric rehabilitation medicine, pulmonary medicine, cardiology, genetics, nutrition, physical and speech therapy, and social work. Every team member is also involved in ongoing research.
  • The Diagnostic Clinic specializes in diagnosis and treatment of rare and unique neuromuscular disorders. This clinic benefits from close collaboration with experts from the National Institutes of Health.

Conditions We Treat

The Neuromuscular Program coordinates care for patients with the following conditions:

Acquired myopathies (polymyositis, dermatomyositis)

Friedreich's ataxia

Acquired neuropathies and polyneuropathies (Guillain-Barre syndrome, chronic inflammatory demyelinating polyneuropathy)

Juvenile amyotrophic lateral sclerosis (ALS)

Charcot-Marie-Tooth disease/Hereditary myopathies

Metabolic myopathies (carnitine palmityl transferase deficiency, McArdle's disease and phosphofructokinase disease (Tarui's disease)) 

Congenital muscular dystrophy (Collagen-VI, LAMA 2, alpha-dystroglycanopathy, SEPN 1)

Mitochondrial myopathies

Congenital myasthenic syndromes

Muscular dystrophies such as facioscapulohumeral muscular dystrophy (FSH or FSHD), Limb-Girdle and myotonic

Congenital myopathies (RYR 1, MTM 1, nemaline)

Myasthenia gravis

Dejerine-Sottas disease

Pompe's disease

Dystrophinopathies (Becker and Duchenne muscular dystrophy)

Spinal muscular atrophy

Interdisciplinary Care

Neuromuscular conditions are rare. Many are misdiagnosed or go unrecognized. The interdisciplinary team at Children’s National has the expertise to recognize these conditions and ensure a timely, accurate diagnosis. Our team includes:

  • Pediatric rehabilitation physicians
  • Neurologists
  • Pulmonologists
  • Cardiologists
  • Dietitians
  • Genetic counselors
  • Nurses
  • Nurse practitioners
  • Physical therapists
  • Social workers
  • Speech therapists 

Contact Us

For more information, call us at 202-476-6193.

Neuromuscular Medicine Program Team

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Contact Information

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Locations

Children’s National sees children from around the Washington, DC, metropolitan region, nation, and world who need the kind of specialized expertise and child-focused care we offer. No matter what your child needs, we can provide care that’s just right.

Meet the Team

Our providers represent medical and surgical specialties, family practice, and general pediatrics.

Related Care Services

Pediatric specialists at Children’s National work closely to ensure an integrated approach to caring for each child and family.

Warning Signs of Neuromuscular Disease

When a child doesn’t reach certain growth milestones, this may be a warning sign of a neuromuscular disease. Low muscle tone, delay reaching motor milestones, difficulty walking, and poor exercise endurance are early signs of neuromuscular conditions.