Neuromuscular Diseases Muscular Dystrophy Association MUSCULAR DYSTROPHIES www.mda.org Cure CMD (Congenital Muscular Dystrophy) Voluntary health agency that fosters neuromuscular disease http://curecmd.org/ research and provides patient care funded almost entirely Nonprofit group whose mission is to bring research, treat- by individual private contributors. MDA addresses the mus- ments and, in the future, a cure for the congenital mus- cular dystrophies, spinal muscular atrophy, ALS, Charcot- cular dystrophies. Works globally with dedicated parent, Marie-Tooth disease, myasthenia gravis, Friedreich’s ataxia, government, and research advocates funds high potential metabolic diseases of muscle, and inflammatory diseases of research and clinical trials, with success being determined by muscle, for a total of more than 40 neuromuscular diseases. clinical applications that improve the lives of those afflicted with CMDs. AMYOTROPHIC LATERAL SCLEROSIS ALS Therapy Development Institute Fibromuscular Dysplasia Society of America www.als.net (FMDSA) Nonprofit biotechnology company dedicated to discover- www.fmdsa.com ing and developing treatments for ALS. The organization A public health charity working toward better diagnosis and focuses on a concentrated drug discovery program for ALS treatment of fibromuscular dysplasia by building awareness, and collaborates with companies and academic researchers funding research, providing patient support, and educating to perform advanced investigations. patients and the healthcare community. The ALS Association FSH Society (Facioscapulohumeral Dystrophy) www.alsa.org www.fshsociety.org Nonprofit voluntary health organization dedicated solely Helps patients and families through education and outreach to the fight against amyotrophic lateral sclerosis. Funds via a newsletter, website, conferences and social media funds research and sponsors advocacy programs, a network of scientific research leading to treatments, guided by a world- chapters, and certified centers and clinics located nation- class Scientific Advisory Board and advocates for increased wide. government and industry funding for research and to encourage drug trials. Les Turner ALS Foundation www.lesturnerals.org Jain Foundation Advances scientific research into the causes, treatments and www.jain-foundation.org prevention of ALS, provides people living with ALS, their Seeks to expedite development of a cure or therapy for families and caregivers exceptional clinical care and support Limb-girdle muscular dystrophy type 2B (LGMD2B) and services, and increases awareness and education of ALS. Miyoshi Myopathy. Maintains a patient registry, funds and monitors research and progress, provides financial support Project ALS to accelerate clinical trials, and encourages scientific collabo- www.projectals.org ration. Nonprofit organization that raises awareness and funds toward treatments and a cure for amyotrophic lateral scle- Muscular Dystrophy Association rosis. www.mda.org Voluntary health agency that fosters neuromuscular disease PRIZE4LIFE research and provides patient care funded almost entirely www.prize4life.org by individual private contributors. MDA addresses the mus- Nonprofit organization dedicated to the discovery of treat- cular dystrophies, spinal muscular atrophy, ALS, Charcot- ments and a cure for ALS. Marie-Tooth disease, myasthenia gravis, Friedreich’s ataxia, metabolic diseases of muscle, and inflammatory diseases of muscle, for a total of more than 40 neuromuscular diseases. Practical Neurology ® Neuromuscular Diseases Muscular Dystrophy Charcot-Marie-Tooth Association (CMTA) www.curecalpain3.org/ www.charcot-marie-tooth.org Coalition to Cure Calpain 3 (C3) Coalition to Cure Calpain Provides education and support to persons with Charcot- 3 provides support for promising research into finding treat- Marie-Tooth disorders, their families, and the health profes- ments or a cure for limb-girdle muscular dystrophy, type sionals who treat them. 2A/Calpainopathy (LGMD2A). Hereditary Neuropathy Foundation The Myositis Association www.hnf-cure.org www.myositis.org Nonprofit organization that raises awareness, funds innova- Works to improve the lives of those affected by inflam- tive research, and offers medical information and emotional matory myopathies. Seeks out persons with inflammatory support for those with Charcot-Marie-Tooth disorder and myopathies, provides a support network, acts as a resource their families and caregivers. for patients and the medical community, advocates for patients, and promotes research into the causes and treat- The Foundation for Peripheral Neuropathy ment of these disorders. www.foundationforpn.org Nonprofit organization whose mission is to dramatically Myotonic Dystrophy Foundation improve the lives of people living with peripheral neuropa- www.myotonic.org thy. Enhances the quality of life of people living with myotonic dystrophy and advances research focused on treatments PARALYSIS and a cure. The world’s largest patient organization focused Christopher and Dana Reeve Foundation solely on myotonic dystrophy. www.christopherreeve.org The Christopher & Dana Reeve Foundation is dedicated to Parent Project Muscular Dystrophy curing spinal cord injury by funding innovative research and www.endduchenne.org improving the quality of life for people living with paralysis Dedicated to ending Duchenne muscular dystrophy through through grants, information and advocacy. accelerated research and advocacy. Demands optimal care for all young men and educates the global community. Miami Project to Cure Paralysis www.themiamiproject.org MYASTHENIA GRAVIS Supports research and related programs in the area of spinal yasthenia Gravis Foundation of America, Inc cord injury. www.myasthenia.org Works to facilitate the timely diagnosis and optimal care of Spastic Paraplegia Foundation, Inc. individuals affected by myasthenia gravis and closely related www.sp-foundation.org disorders and to improve their lives through programs of Volunteer nonprofit organization dedicated to finding cures patient services, public information, medical research, pro- for hereditary spastic paraparesis and primary lateral sclero- fessional education, advocacy, and patient care. sis. See also Genetic Alliance, page 41, and National Ataxia Foundation, page 8. NEUROPATHIES American Diabetes Association The Spinal Cord Society www.diabetes.org www.scsus.org/ Nonprofit health organization providing diabetes research, International advocacy organization that supports research, advocacy services, and information, including the complica- publishes a newsletter, and sponsors an international net- tions of diabetes, such as diabetic neuropathy. work of chapters. Practical Neurology ® Neuromuscular Diseases SPASMODIC DYSPHONIA Fight SMA National Spasmodic Dysphonia Association www.fightsma.org www.dysphonia.org National nonprofit organization committed to accelerating Works to advance medical research into the causes of and a cure for spinal muscular atrophy. treatments for spasmodic dysphonia, promotes physician and public awareness of the disorder, and sponsors support Kennedy’s Disease Association groups for patients and their families. www.kennedysdisease.org Nonprofit resource that offers support and information SPINAL MUSCLE ATROPHIES about spinal bulbar muscular atrophy, or Kennedy’s disease. Cure SMA Works to increase awareness and to raise funds in support www.curesma.org of research. Sponsors support groups. Provide funding for SMA research through our comprehen- sive research model leading providers of family support and Spinal Muscular Atrophy Foundation patient services. www.smafoundation.org Nonprofit foundation dedicated to accelerating the devel- opment of a treatment or cure for SMA. Practical Neurology ®.