Who to Contact
American Syringomyelia Alliance Project
P.O. Box 1586
Longview, Texas 75606-1586
800-ASAP-282 (Toll Free)
The American Syringomyelia Alliance Project, Inc. (ASAP) is a non-profit, 501(c)(3), membersupported
organization, chartered in May 1988. Don and Barbara White started ASAP as a grassroots
organization in their spare bedroom due to the frustration they encountered when Barbara was first
diagnosed. Since then ASAP has become a nationwide clearinghouse for information regarding Chiari (CM) and syringomyelia (SM) and related disorders. ASAP sponsors an annual medical conference linking the top medical professionals in the field with those affected. ASAP reviews and funds research annually. In addition, they promote awareness by hosting community fundraisers throughout the nation. Together with its membership, ASAP works toward fulfilling its mission to improve the lives of persons affected by syringomyelia, Chiari malformation and related disorders while we find the cure.
Where to Go to Chat with Others
- Syringomyelia Friends
Syringomyelia is a diagnosis which we are given that leads to confusion, frustration, anger, sadness and pain. Through this group, we will work together to help one another sort through the emotions and information associated with this disease.
- Chiari Connection International
Chiari Connection International (CCI) was created for those who suffer from Arnold Chiari Malformation and related disorders. Related disorders can include: syringomyelia (SM); basilar invagination (BI); cranio-spinal instability (CSI); intracranial and intraspinal cysts; tumors of the cerebellum, brain stem and spinal cord; spina bifida (SB); hydrocephalus; pseudotumor cerebri (PTC).
- ACM/syringomyelia support group and mailing list
A group for and about those who suffer from Chiari Malformations with or without syringomyelia/syrinx.
- Our Chiari Kids
This is the place to share information about Chiari and Syringomyelia. It's not only for questions and answers about ACM/SM and related disorders but also a place to share what our children's lives with these conditions have been like, where we are now and where we hope to be in the future.
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