Families of Spinal Muscular Atrophy - SMA
Organization URL(s)
info@fsma.orgwww.fsma.org
Other Contact Information
P.O. Box 196
Libertyville,
IL 60048-0196
800-886-1762 (Voice - Toll-free)
847-367-7620 (Voice)
847-367-7623 (FAX)
Description
Families of Spinal Muscular Atrophy was founded to support families with members suffering from the condition and to promote research into treatments for spinal muscular atrophy (SMA). Spinal muscular atrophy is a group of diseases which affect all age groups, from newborns to adults. The diseases included under spinal muscular atrophy are: Infantile Progressive Spinal Muscular Atrophy (Werdnig-Hoffmann Disease), Juvenile Progressive Spinal Muscular Atrophy (Kugelberg-Welander Disease), and Adult Progressive Spinal Muscular Atrophy (Aran-Duchenne Type).
Online Resources
- Understanding Spinal Muscular Atrophy
http://www.fsma.org/FSMACommunity/UnderstandingSMA/
Print Resources
Informational brochures dealing with the spinal muscular atrophies and a videotape "Living with SMA" are available. Serial publication: "Direction" (newsletter), quarterly--news on new equipment and physical therapy exercises, family profiles, coping tips, and research update; "Understanding Spinal Muscular Atrophy--available at no cost, English, Spanish and French.