Search Results: MCH Organizations

Annotation: Established in 1984, Families of Spinal Muscular Atrophy (FSMA) is a national organization that funds for research and promotes public awareness of Werdnig-Hoffmann disease, Kugelberg-Welander disease, and Aran-Duchenne adult progressive spinal muscular atrophy (SMA). Services include a referral system (in conjunction with the national SMA registry at Indiana University), a parent network, an equipment pool, and a resource library of print and audiovisual materials. Publications include a quarterly newsletter. The organization provides materials in Spanish and French. FSMA also sponsors conferences.

Keywords: Aran-Duchenne type (Adult progressive spinal muscular atrophy), Benign congenital hypotonia, Kugelberg-Welander disease, Neuromuscular diseases, Patient identification, Research, Education, Spinal muscular atrophy, Werdnig-Hoffmann disease

Annotation: The Muscular Dystrophy Association (MDA) provides a comprehensive patient and community service program. MDA's nationwide network of over 200 hospital affiliated clinics provides access to top health professionals who can advise about the medical management of neuromuscular diseases affecting children and adults. Other services include assistance with the purchase and repair of wheelchairs or leg braces and a summer camp for youngsters. The Association also supports an international research program seeking treatments and cures for neuromuscular disorders. Referrals, reference information, and publications are provided to consumers. Publications include a wide variety of brochures and a bi-monthly newsletter, Quest.. Audiovisual materials are available. Some materials are available in Spanish. The Association also sponsors conferences and workshops.

Keywords: Acid Maltase Deficiency, Becker Muscular Dystrophy, Benign Congenital Hypotonia, Duchenne Muscular Dystrophy, Friedreichs Ataxia, Muscular Dystrophy, Spinal Muscular Atrophy, Werdnig-Hoffmann disease