Spinal Muscular Atrophy

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
Search Google for "Spinal Muscular Atrophy"

Who to Contact

Families of S.M.A. (Spinal Muscular Atrophy)
PO Box 196
Libertyville, Illinois, USA 60048-0196
(847) 367-7620
(800) 886-1762
Website: http://www.fsma.org/
 

The Families of S.M.A. (Spinal Muscular Atrophy) organization promotes and funds research, provides families with the use of their equipment pool to help alleviate the high cost of medical equipment, promotes public awareness, provides networking, and funds a roster at Indiana University, enabling researchers a central location from which to access necessary family information. They also provide families who have little or no insurance with financial assistance in the purchase of necessary equipment.

Families of S.M.A. has local support groups with a directory available. They will provide assistance to individuals who wish to start a chapter in their area, and provide parent-to-parent matching through network listings. SMA publishes a quarterly newsletter, Directions, which is included in membership fees, and offer a brochure that describes the organization. They offer a new parent packet that includes; back issues of the newsletter, information on daily management of affected persons, research updates, and networking. There is also a bibliography of books, a lending library and a video that are available to members. Call or write for further information.

Families of SMA collects information on physicians and researcher who treat and study the diseases and makes this information available to its members through the newsletter. They will provide referrals to other resources and providers.

Where to Go to Chat with Others

• SMAfriends
  For those with SMA and their family, friends, caregivers, doctors and loved ones.

• SMA Message Boards
  The purpose of these Forums is to build a "knowledge base" for SMA - created by parents and people affected with SMA - to help and support each other.

Learn More About It

• Coping with a Diagnosis of SMA
  If your child is newly diagnosed with SMA.

• Article from Online Mendelian Inheritance in Man Data Base.

• Living SMArt A newsletter for adults with SMA.

• NINDS Spinal Muscular Atrophy Information Page
   
• The Spinal Muscular Atrophies
   

Web Sites

• Families of Spinal Muscular Atrophy (SMA)
  

• The Jennifer Trust for Spinal Muscular Atrophy - UK

• Fight SMA

• The International Spinal Muscular Atrophy Patient Registry
  
  
• Spinal Muscular Atrophy Foundation
  
  
• Spinal Muscular Atrophy Coalition