Neuroscience Institute

Appointments: 1-866-870-5570

Muscular Dystrophy Association (MDA) Clinic

Published On 07/24/2012

At Le Bonheur's Muscular Dystrophy Association (MDA) Clinic, we provide comprehensive care from a multidisciplinary team in one appointment. Our team includes pediatric specialists in neurology, pulmonology, cardiology and orthopedics. Patients also have access to nutrition/dietitian, occupational, physical and speech therapy, palliative care and social work.

Conditions we treat

The muscular dystrophy team at Le Bonheur cares for children with a variety of conditions including:

  • Duchenne muscular dystrophy
  • Becker muscular dystrophy_O5A7731
  • Spinal muscular atrophy
  • Charcot Marie Tooth disease
  • Congenital muscular dystrophy
  • Congenital myopathy
  • Myasthenia Gravis
  • Congenital myasthenic syndrome
  • Dermatomyositis
  • Polymyositis
  • Friedreich ataxia
  • Facioscapulohumeral muscular dystrophy
  • Limb girdle muscular dystrophy
  • Emery Dreifuss
  • Metabolic myopathy
  • Mitochondrial myopathy

Research

Our physicians and researchers are working on several studies to improve the treatment of children with muscular dystrophy. Studies underway include:

  • Exon skipping for Duchenne muscular dystrophy
  • Cooperative International Neuromuscular Research Group

For more information about research, contact the Neuroscience Institute at neuroscience@lebonheur.org.

We also partner with and provide registry data to MDA. Registry data helps MDA conduct important research to improve survival and quality of life for patients with muscular dystrophy and related diseases. 

What is a typical first appointment like?

Your child’s first appointment will be arranged by a clinical coordinator who works with MDA patients. Our clinic is held twice a month from 8:30 a.m. to 12:30 p.m. Occasionally patients will be sent to the Lab for bloodwork or Radiology for X-rays if ordered by the physician. The purpose of our clinic is to take care of every need for the family and patient.

We encourage families to prepare for a long visit. You are welcome to bring snacks, books or small toys if you’d like. Please bring a list of medications including dosage amount and any paperwork regarding guardianship if necessary. Many families find it helpful to prepare a list of questions for our physicians and staff.

For more information

For more information, contact the Neuroscience Institute at neuroscience@lebonheur.org or Le Bonheur Connect at 901-287-PEDS or 1-866-870-5570.