The Stanford Neuromuscular Disorders Program Useful Links

Motor Neuron Diseases

Amyotrophic Lateral Sclerosis (ALS)
ALS Association, patient education, services and research,

Spinal Muscular Atrophy (SMA)
Cure SMA, support, services, education & research,
SMA Support Inc., provide grants and resources to families,
SMA Foundation,

Muscular Dystrophy

Charcot-Marie Tooth Association:
Muscular Dystrophy Association,
Myotonic Dystrophy Foundation, education, support & research,
Parent Project, Duchenne MD, education, advocacy, support & research,
Young Adult Transitions Program,

Facioscapulophueral (FSH)

FSH Society, education and research,

Limb Girdle Muscular Dystrophy

Foundation and registry for LGMD2B (Dysferlin) and LGMD2L (ANO5),
Kurt and Peter Foundation
Jain Foundation, Limb Girdle 2 B & Miyoshi patient registry & research foundation,
Limb Girdle Research Fund,
Limb Girdle MD, FKRP Registry,

Congenital Muscular Dystrophy

Congenital Muscle Disease International Patient Registry,
Cure CMD, advocacy and education,

Metabolic Diseases of the Muscle

North American Mitochondrial Disease Consortium, patient support & research,
United Mitochondrial Disease Foundation, patient support & research,


A Foundation Building Strength: nemaline myopathy advocacy,
Joshua Frase Foundation - Myotubular Myopathy, education & research,

Neuromuscular Junction Disease

Myasthenia Gravis Foundation of America, Inc., patient support, education & research,


Friedreich’s Ataxia Research Alliance,
The Neuropathy Association,

Resources for teens living with neuromuscular conditions