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