Patient and Family Resources

Motor neuron diseases

• Amyotrophic lateral sclerosis (ALS)

  • ALS Association provides patient education, services and research.

• Spinal muscular atrophy (SMA)

  • Cure SMA offers support, services, education and research.
  • SMA Support Inc. provides grants and resources to families.
  • SMA Foundation aims to accelerate the development of a treatment for SMA.  

Muscular dystrophy

• Muscular Dystrophy Association pursues innovations in science and care to help those with neuromuscular disease.
• Myotonic Dystrophy Foundation provides education, support and research.
• Parent Project offers education, advocacy, support and research on Duchenne muscular dystrophy.
• Young Adult Transitions Program provides resources, programming and community connections for young adults with neuromuscular diseases.
• Facioscapulohumeral (FSH) muscular dystrophy
  • FSH Society provides education and research.
• Limb-Girdle muscular dystrophy
  • Kurt and Peter Foundation funds research to produce drug treatments.
  • Jain Foundation provides a Limb-Girdle 2B and Miyoshi myopathy patient registry and research foundation. 
  • Limb-Girdle Research Fund provides grants for those developing treatments.
  • Limb-Girdle MD offers a Fukutin-related protein registry.
• Congenital muscular dystrophy
  • Congenital Muscle Disease International patient registry.
  • Cure CMD provides advocacy and education.

Metabolic diseases of the muscle

• North American Mitochondrial Disease Consortium offers patient support and research.
• United Mitochondrial Disease Foundation provides patient support and research. 

Myopathies

• A Foundation Building Strength offers nemaline myopathy advocacy. 
• Joshua Frase Foundation provides myotubular myopathy education and research.

Neuromuscular junction disease

• Myasthenia Gravis Foundation of America, Inc. offers patient support, education and research. 
• Myasthenia Gravis Foundation of California funds research and education and accepts volunteers.

Neuropathies

• Friedreich’s Ataxia Research Alliance supports scientific research leading to treatments for FA. 

Peripheral neuropathies

• Charcot-Marie-Tooth Association is devoted to developing new drugs, improving quality of life, and finding a cure.

Resources for teens living with neuromuscular conditions

• Young Adult Transitions Program provides resources, programming and community connections for young adults with neuromuscular diseases.