The Stanford Division of Neuromuscular Medicine Useful Links

Motor Neuron Diseases

Amyotrophic Lateral Sclerosis (ALS)
ALS Association, patient education, services and research, www.ALSA.org

Spinal Muscular Atrophy (SMA)
Cure SMA, support, services, education & research, www.Curesma.org
SMA Support Inc., provide grants and resources to families, www.smasupport.com
SMA Foundation, www.smafoundation.org

Muscular Dystrophy

Muscular Dystrophy Association, www.MDA.org
Myotonic Dystrophy Foundation, education, support & research, www.Myotonic.org
Parent Project, Duchenne MD, education, advocacy, support & research, www.parentprojectmd.org
Young Adult Transitions Program, www.transitions.mda.org

Facioscapulophueral (FSH)

FSH Society, education and research, www.FSHsociety.org

Limb Girdle Muscular Dystrophy

Foundation and registry for LGMD2B (Dysferlin) and LGMD2L (ANO5), www.jain-foundation.org
Kurt and Peter Foundation, www.kurtpeterfoundation.org
Jain Foundation, Limb Girdle 2 B & Miyoshi patient registry & research foundation, www.jain-foundation.org
Limb Girdle Research Fund, www.lgmd2ifund.org
Limb Girdle MD, FKRP Registry,  www.fkrp-registry.org

Congenital Muscular Dystrophy

Congenital Muscle Disease International Patient Registry,  www.cmdir.org
Cure CMD, advocacy and education, www.curecmd.org

Metabolic Diseases of the Muscle

North American Mitochondrial Disease Consortium, patient support & research, www.umdf.org
United Mitochondrial Disease Foundation, patient support & research, www.umdf.org

Myopathies

A Foundation Building Strength: nemaline myopathy advocacy, www.buildingstrength.org
Joshua Frase Foundation - Myotubular Myopathy, education & research, www.joshuafrase.org

Neuromuscular Junction Disease

Myasthenia Gravis Foundation of America, Inc., patient support, education & research, www.myasthenia.org
Myasthenia Gravis Foundation of California, http://www.myasthenia-ca.org

Neuropathies

Friedreich’s Ataxia Research Alliance,  www.cureFA.org

Peripheral Neuropathies

Charcot-Marie Tooth Association, www.cmtausa.org