Web Directory

» Elizabeth's Page
   Elizabeth has Spinal Muscular Atrophy Type 1. She is in a clinical study at Stanford for SMA type. She has beat the odds. Read about her journey through life.
   http://www.our-sma-angels.com/elizabeth/

» Families of SMA (Spinal Muscular Atrophy)
   International support group and resource center for this disease, includes current research.
   http://www.fsma.org

» FightSMA
   Organization raising public awareness and funds for research. Features disease fact sheets, a message board, merchandise, and research updates.
   http://www.fightsma.org/

» GeneClinics SMA Information Page
   Overview of SMA, its genetics, clinical presentation and testing. It is written by experts in SMA research and genetic testing.
   http://www.geneclinics.org/profiles/sma/index.html

» Ilsa's SMA Resources
   A detailed description, news and links with information about Spinal Muscular Atrophy. A personal story of a baby, Ilsa.
   http://www.smaangel.com

» Jennifer Trust for Spinal Muscular Atrophy
   Providing support, information and research news for UK families.
   http://www.jtsma.org.uk

» NHS Choices: Spinal Muscular Atrophy
   Provides information on this debilitating genetic condition. Includes a short video and details of symptoms, causes, diagnosis, treatment and prevention.
   http://www.nhs.uk/conditions/Spinal-muscular-atrophy/

» Nightmares from a Disability Perspective
   Suzy describes being diagnosed with spinal muscular atrophy at the age of two and the many years of inappropriate treatment that followed.
   http://www.tellingstories.nhs.uk/transcript.asp?id=30

» Our SMA Angels
   Large on-line source of information and inspiration regarding children with SMA. See their faces, read their stories, remember those who have passed and fight with those who are fighting.
   http://www.our-sma-angels.com

» Rhiannon’s Journey: Receiving a Diagnosis Through to Prenatal Testing
   Rhiannon describes obtaining a diagnosis of spinal muscular atrophy with respiratory distress only after the death of her child. She feels that the different departments and hospitals involved in her daughter's care did not communicate with each other.
   http://www.tellingstories.nhs.uk/transcript.asp?id=49

» SMA Angels Support Site
   A place for people to find support for Spinal Muscular Atrophy (SMA) / Werdnig-Hoffman.
   http://www.smaangels.com

» SMA Support Inc.
   A tax-exempt, not-for-profit organization dedicated to providing information and support to family, friends, individuals and caregivers on all aspects regarding the genetic disease SMA.
   http://www.smasupport.com

» Spinal Muscular Atrophy Foundation
   Information on SMA, and the latest updates in research, treatment and funding.
   http://www.smafoundation.org

» The Sean W. Venezia Foundation
   Dedicated to fighting spinal muscular atrophy by helping fund research for treatment and a cure, and providing support to families affected by SMA Type I.
   http://www.smafund.org

» Tori's Buddies
   Canadian Chapter of Andrew's Buddies, fighting Spinal Muscular Atrophy SMA.
   http://www.fightsma.org/index.php?fam_tori

» Twins with SMA
   Sam and Alex Bolton - twins with spinal muscular atrophy. Find information and support for SMA sufferers as well as fund raising efforts.
   http://www.twinswithsma.co.uk