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