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 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.
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.
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.
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.
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.
“…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.
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.