Neuromuscular diseases are a large group of disorders with various causes sharing one common characteristic--muscle weakness. One large group of neuromuscular diseases is caused by abnormalities in the nerves as they exit the brainstem and spinal cord and travel out to their respective muscles. These are called "neuropathies." Common examples in this group include spinal muscular atrophy (SMA) and Charcot-Marie-Tooth disease. Another large group of neuromuscular diseases, the "myopathies," are caused by abnormalities in the muscle tissue. Some of the more common examples include Duchenne muscular dystrophy and myotonic dystrophy. A less common cause of neuromuscular weakness are the disorders of neuromuscular transmission. These are caused by abnormalities at the spot where the nerves attach to the muscle. Examples of disorders of neuromuscular transmission include myasthenia gravis and botulism.
The needs of children with neuromuscular diseases are variable and frequently require coordinated, multidisciplinary care involving a number of different specialists. The program's faculty and staff include multiple pediatric specialists, including a neurologist, cardiologist and pulmonologist in addition to a nurse clinician/coordinator and physical therapist. Due to the complex nature of our patients' conditions, we also work closely with representatives from adult neurology, child development and behavioral health, gastroenterology and nutrition, medical genetics, neuropsychology, neurosurgery, occupational therapy, orthopedics, respiratory therapy, social work, and speech pathology.
Front row: Robbin Newton, OT; Stephanie Wechsler, MD; Christie Preddy, RN; Richard Kravitz, MD
Middle row: Julie Coats, PT; Heather Henderson, MD; Laura Case, PT
Back row: Gina Miller, SW; Amanda Hall, OT; Jennifer Olson BSN; Eddie Smith, MD
The mission of the Duke Children's Neuromuscular Program, under the co-direction of Edward C. Smith, MD and Richard Kravitz, MD, is to offer exceptional care to infants, children, adolescents and young adults with neuromuscular disorders by providing comprehensive specialty care to improve the quality of their lives through compassionate and innovative services for our patients and their families.
The primary goals of the clinic are to provide:
- State-of-the-art diagnostic evaluations and therapy for patients with pediatric neuromuscular disorders in a timely manner. This may include specialized laboratory studies, electromyography and muscle biopsy.
- Clinical counseling, anticipatory guidance, and up-to-date, accurate information relevant to the patient’s diagnosis.
- Information regarding pertinent clinical trials and assistance with enrollment.
- Timely referral to appropriate specialists and therapists.
The Duke Children's Comprehensive Neuromuscular Program offers coordinated, multidisciplinary care for infants, children, adolescents, and young adults with a wide variety of neuromuscular disorders, including:
- Duchenne Becker and other forms of congenital muscular dystrophies
- Limb-girdle muscular dystrophy, myotonic dystrophy, and metabolic myopathy
- Neuromuscular junction disorders including myasthenia gravis and congenital myasthenic syndrome
- Peripheral neuropathies, including Charçot-Marie-Tooth disease and other hereditary neuropathies, as well as acquired neuropathies such as acute and chronic inflammatory demyelinating neuropathies, etc.
- Spinal Muscular Atrophy (SMA)
- Brachial Plexus injuries
The diagnosis and treatment of children with neuromuscular diseases can be difficult and requires timely evaluations, expert diagnosis and testing. Our team is committed to providing the most current, comprehensive and specialized care possible.
Physicians and Staff
|Name||Areas of Special Interest|
|Raymond C. Barfield, MD, PhD||Research focused on improving therapeutics for neuroblastoma, improving the quality of life of children with complex, chronic or fatal illnesses, and study of areas where medical and theological interests intersect|
|Robert W. Benjamin, MD||Type 1 diabetes, disorders of calcium and phosphorus, congenital adrenal hyperplasia|
|Margarita Bidegain, MD, MHS-CL||High-risk neonatal care, prenatal, neonatal and pediatric palliative care|
|Heather T. Henderson, MD||Congenital and acquired pediatric heart disease, cardiomyopathy and heart failure in children, mechanical circulatory support in children, pediatric heart transplantation|
|Richard M. Kravitz, MD||Pediatric sleep disorders, obstructive sleep apnea, polysomnography, pulmonary disease secondary to muscular dystrophies and neuromuscular weakness, technology- dependent children, asthma, complicated pneumonias, recurrent pneumonia, congenital lung malformations, reflux-related lung disease, pediatric lung disease|
|Robert K. Lark, MD, MS||All aspects of children's orthopaedics; disorders of the spine and hip, including scoliosis and hip dysplasia; pediatric fractures|
|Gary R. Maslow, MD||Support and psychological treatment for children, adolescents, and young adults with chronic medical illnesses, including treatment for poor adherence, medical anxiety, depression, PTSD, and other problems adapting to chronic illness|
|Leon J. "Yul" Reinstein, MD||General pediatric gastroenterology, cystic fibrosis, inflammatory bowel disease, and nutritional deficiencies in complex cases requiring aggressive intervention (including peg placements), GI procedures, management of short-bowel syndrome, celiac disease|
|Henry E. Rice, MD||Neonatal surgery, prenatal counseling, general pediatric thoracic and abdominal surgery|
|Edward C. Smith, MD||General child neurology with special interest in neuromuscular disorders, brachial plexus injuries, cerebral palsy|
|Purnima Valdez, MD||Assessment and management of toddlers, children, and adolescents with developmental and behavioral disorders, including speech and language delay, learning disabilities, general developmental delay, autism spectrum disorders, Asperger's syndrome, disruptive behavior disorders, and ADHD|
|Stephanie Burns Wechsler, MD||Congenital heart disease occurring as part of genetic syndromes; other cardiovascular diseases with a genetic cause, including cardiomyopathies and connective-tissue diseases, such as Marfan syndrome|
Jennifer Pendleton Olson, RN, BSN
Nurse Clinician/Nurse Coordinator
Assistant Professor, Division of Physical Therapy
Julie Coats, MPT
Gina Miller, LCSW
Robbin Newton, MA, OTR/L, BCP, C/NDT
Arthur Suarez, MS
Vanessa Yount, RD, LDN (Dietitian)
Clinic Hours and Locations
Duke Children's Hospital & Health Center
Neuromuscular Clinic, Second Floor
2301 Erwin Road
Durham, NC 27705
Hours: First Friday of every month, 8:00am - 4:30pm
Neurology Clinic, First Floor
3000 Erwin Road
Durham, NC 27705
Hours: Second and fourth Friday of every month, 8:00am - 4:30pm
Appointments and Contact Information
To serve our patients and referring physicians, faculty physicians covering pediatric pulmonary are always on call to answer questions and provide consultation.
- For new and return appointments, prescription refills, or to speak with a nurse, please call Jennifer Pendleton Olson, RN, BSN at 919-613-6832.
- For urgent calls after business hours, on weekends, or on holidays, please call 919-684-8111 and ask the operator to page the pediatric pulmonologist on call.
- For physicians requesting consultations or making referrals, please call the Duke Consultation and Referral Center at 800-MED-DUKE (800-633-3853).
Duke Children's Ranked for Top Pediatric Care
Nationally recognized by U.S. News & World Report as one of the best pediatric neurology and neurosurgery programs, we are dedicated to innovative, compassionate and life-changing care for all children. [Learn more]
- Parent Project Muscular Dystrophy (PPMD) Names Duke Children's Certified Duchenne Care Center
- Robotic Arm Gives Independence to Teen with Muscular Dystrophy
- Child With Mitochondrial Disease Teaches a Lesson of Compassion
- Muscle-Targeted Gene Therapy Reverses Rare Muscular Dystrophy in Mice
- Cell Anchors Required to Prevent Muscular Dystrophy
- Pulmonary and Sleep Medicine
- Brachial Plexopathy
- Pediatric Division of Neurology
(Duke School of Medicine)
- Pediatric Division of Pulmonary and Sleep Medicine
(Duke School of Medicine)
- Pediatric Division of Cardiology
(Duke School of Medicine)
- Duke Center for Human Genetics
- Pediatric Clinical Trials
- Association for Glycogen Storage Disease (GSD)
- Carolinas Chapter of the SMA
- Charcot-Marie-Tooth Association
- Cure Congenital Muscular Dystrophy (CMD)
- Families of Spinal Muscular Atrophy (SMA)
- Fight Spinal Muscular Atrophy (SMA)
- Facioscapulohumeral Muscular Dystrophy (FSH) Society
- Fight SMA
- International Pompe Association
- Lysosomal Disease Network
- Muscular Dystrophy Association
- Muscular Dystrophy Family Foundation
- Myotonic Dystrophy Foundation
- National Ataxia Foundation
- Neuropathy Association
- Parent Project Muscular Dystrophy
- SMA Foundation
- Treat Neuromuscular Disorders (NMD)
- United Mitochondrial Disease Foundation
- Your Genes Your Health
(Duchenne/Becker Muscular Dystrophy)