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Patient and Family Resources

Motor neuron diseases

  • Amyotrophic lateral sclerosis (ALS)

    •  provides patient education, services and research.
  • Spinal muscular atrophy (SMA)

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

Muscular dystrophy

  •  pursues innovations in science and care to help those with neuromuscular disease.
  •  provides education, support and research.
  •  offers education, advocacy, support and research on Duchenne muscular dystrophy.
  •  provides resources, programming and community connections for young adults with neuromuscular diseases.
  • Facioscapulohumeral (FSH) muscular dystrophy
    •  provides education and research.
  • Limb-Girdle muscular dystrophy
    •  funds research to produce drug treatments.
    • Jain Foundation provides a Limb-Girdle 2B and Miyoshi myopathy patient registry and research foundation. 
    •  provides grants for those developing treatments.
    • Limb-Girdle MD offers a .
  • Congenital muscular dystrophy
    • .
    •  provides advocacy and education.

Metabolic diseases of the muscle

  •  offers patient support and research.
  •  provides patient support and research. 

Myopathies

  •  offers nemaline myopathy advocacy. 
  •  provides myotubular myopathy education and research.

Neuromuscular junction disease

  •  offers patient support, education and research. 
  •  funds research and education and accepts volunteers.

Neuropathies

  •  supports scientific research leading to treatments for FA. 

Peripheral neuropathies

  •  is devoted to developing new drugs, improving quality of life, and finding a cure.

Resources for teens living with neuromuscular conditions

  •  provides resources, programming and community connections for young adults with neuromuscular diseases.