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- Spinal muscular atrophy (SMA) is a genetic, motor neuron disease characterized by wasting of the skeletal muscles caused by progressive degeneration of the anterior horn cells of the spinal cord. There are various forms of SMA, including Werdnig-Hoffman Disease, Kugelberg-Welander Disease and Kennedy Disease. Here are some good resources about SMA.
- Andrew’s Buddies (fightsma.com)
- Andrew’s Buddies is “a national organization committed to accelerating a cure for spinal muscular atrophy (SMA).” The organization funds SMA genetic work, the identification of promising compounds for SMA treatment, and the development of strategies to increase the production of the missing protein in SMA. Its website provides a good explanation of the genetics of SMA as well as current research news.
- Facts About Spinal Muscular Atrophy (SMA)
- This brochure from the Muscular Dystrophy Association (U.S.) addresses frequently asked questions about SMA as well as the role of the Association in finding a treatment or cure.
- Families of SMA Home Page
- Families of SMA is a nonprofit organization that raises funds to promote research into the causes and cure of SMA and supports families affected by SMA. Its website is packed with information and resources about SMA, research news, message boards, a kids’ section, and much more.
- Jennifer Trust for Spinal Muscular Atrophy
- The Jennifer Trust is a UK support group for people with spinal muscular atrophy and their families. Its website includes information about the organization’s contact network and fundraising activities, a chat group, and links to personal and other web pages.
- Kennedy’s Disease Association
- This extensive website includes information about Kennedy’s Disease (also known as spinal bulbar muscular atrophy, SBMA, or Kennedy’s syndrome), who it affects, genetic counseling/inheritance, contacts, symptoms, treatments, medical articles, common misdiagnosis, a chat room, and much more.
- Our SMA Angels
- The personal stories of babies with SMA can be found throughout the web. This site features many profiles in one place.
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Spinal Muscular Atrophy Foundation
- The mission of the Spinal Muscular Atrophy Foundation is to accelerate the development of a treatment or a cure for SMA, the number one genetic killer of infants and toddlers. This site provides information and updates about SMA.
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SMA Support
- “…dedicated to providing information and support on all aspects regarding the genetic disease Spinal Muscular Atrophy,” this site offers information, articles, news, and more. Well worth visiting, but visitors should view medical and related information with caution as there is no indication of who sponsors or authors this site.
- SMAnet
- This website provides basic information about SMA with a focus on support networks, including an e-mail list, international support groups, and online databases of consumers and professionals. The site appears to be in its beginnings but has potential. Visitors should view medical and related information with caution as there is no indication of who sponsors or authors this site.
- Spinal Muscular Atrophy
- A basic fact sheet from the National Institute of Neurological Disorders and Stroke.
- Spinal Muscular Atrophy (SMA)
- A comprehensive overview, explanation and definition of spinal muscular atrophy disorders from the Muscular Dystrophy Association of Canada.
- Related Subjects
- Muscular Dystrophy
- Neuromuscular Disorders
- Rare Disorders
- Resources in your state