Neuromuscular Medicine Program

What Our Program Offers

• Top-Ranked Care

  Children’s National Hospital has consistently been named one of the top children’s hospitals ranked by U.S. News & World Report. Our team consists of nationally and internationally recognized team members actively involved in leading research, advocacy and clinical education. Our Neuromuscular Medicine Program has received a number of national recognitions including:

  • Parent Project Muscular Dystrophy’s (PPMD): Certified Duchenne Care Center
  • Muscular Dystrophy Association: Care Center
  • Cure SMA: Care Center Network
  • Charcot-Marie-Tooth (CMT) Association: Center of Excellence

• Care for Your Child's Physical and Mental Health

  We’re dedicated to giving your child the highest quality of life in and out of a clinical setting. In our comprehensive Neuromuscular Medicine Program, we offer support for social, educational and emotional difficulties that often accompany neuromuscular conditions. Our specialists are nationally recognized leaders in care, bringing high quality and cutting edge diagnostics, research and treatment approaches to improve the care for your child.

• Consolidated Appointments

  Several specialists from our program may see your child on the same day in a multidisciplinary clinic, minimizing the burden of multiple appointments for families and emphasizing a coordinated care model approach. These specialists may include:

  • Neurologist
  • Physiatrist
  • Pulmonologist
  • Cardiologist
  • Endocrinologist
  • Physical therapist
  • Occupational therapist
  • Bone health specialist
  • Dietician
  • Social worker
  • Genetic counselor
  • Research coordinator
  • Clinical program coordinator
  • Patient-family advisor/advocate

• Diagnostic Services

  In a detailed evaluation, our experts in Neuromuscular Neurology look for signs and symptoms suggestive of a neuromuscular disease in your child, and tailor the diagnostic workup and treatment plans specially for each child. Your visit may also include evaluation with a genetic counselor with expertise in neuromuscular disorders. Among our detailed diagnostics tests are:

  • Electrodiagnostics (EMG and nerve conduction study)
  • Genetic testing
  • Muscle ultrasound
  • Serologic (blood) testing
  • Skin, muscle or nerve biopsies

  Patients who remain undiagnosed despite thorough evaluations may also benefit from input from world renowned neuromuscular experts from the National Institutes of Health who participate in the Children’s National Neuromuscular Undiagnosed Disease Clinic.

• Groundbreaking Medical Therapies

  Children's National Hospital has been actively involved in clinical and basic science or laboratory research and the Center for Genetic Medicine Research has led groundbreaking research in neuromuscular medicine. Our team utilizes up to date standard of care practices for various neuromuscular disorders, combined with expedited initiation of therapies, which may include:

  • Spinraza™, ZOLGENSMA® and Evrysdi™ for spinal muscular atrophy; and
  • Exondys 51, VYONDYS 53, AMONDYS 45™ and EMFLAZA® for Duchenne muscular dystrophy.

  Additional disease specific therapies are used to treat conditions such as myasthenia gravis, congenital myasthenic syndrome, Pompe disease, Guillan Barre Syndrome/CIDP, infantile botulism and myotonic disorders.

• Camps and Community Engagement

  Our team members participate with our patients in the Muscular Dystrophy Association summer camp and we also collaborate with MedStar National Rehabilitation Hospital to provide an adaptive sports camp. In addition, members of our team are involved with teen and young adult support groups in the community for those with neuromuscular disease.

More About the Neuromuscular Medicine Program

• 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, rehabilitation medicine, pulmonary medicine, cardiology, genetics, bone health, nutrition, physical and occupational therapy and social work. Team members throughout our program are also engaged 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.

• Services We Provide

  Our Neuromuscular Program offers the following services: 

  • Comprehensive clinical evaluations
  • Genetic counseling: We provide in depth and compassionate genetic counseling and testing ranging from personalized sequencing panels tailored to your child’s symptoms to broad testing such as whole exome sequencing approaches

  We also offer treatments and diagnostic testing such as:

  • Braces, splints, Angel Arms and WREX
  • Leading-edge medications like Spinraza™ and ZOLGENSMA®, new therapies for 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 (eg: 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