CHIARI MALFORMATION ORGANIZATIONS
American Syringomyelia & Chiari Alliance Project
903-236-7079, 800-272-7282
P.O. Box 1586
Longview, TX 75606-1586
A national nonprofit organization that functions as a clearinghouse for information on syringomyelia, a rare progressive condition characterized by the presence of abnormal fluid-filled cavities within the spinal cord and Chiari malformation. The organization provides information to people with syringomyelia and Chiari malformation, and seeks to increase public awareness of the disorders. The project also encourages medical research and seeks to raise funds for the investigation into the possible causes of, and the development of new treatments for, the disorder. The American Syringomyelia Alliance Project publishes a newsletter and produces informational materials and videotapes. It also hosts an annual conference and has a self-help network project.