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.