Spina Bifida
See also Latex Allergy,
Hydrocephalus
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The Spina Bifida Association of America's mission is to promote the prevention of spina bifida and to enhance the lives of all affected. They promote public awareness, and provide funding for research. They have local chapters and a directory is available. Contact the national office at the above address for information concerning a chapter in your locality. They will provide assistance to individuals who wish to start a support group in their locality. The Association provides educational scholarships. Call their 800 number or write to the above address for further information.
SBAA publishes a bi-monthly newsletter, SBAA Insights, that is a benefit of membership. They also have brochures including, "Educational Issues among Children with Spina Bifida," "Latex (natural rubber) Allergy in Spina Bifida Patients," and "Learning Among Children with Spina Bifida." The Association has books and videos for distribution, among these are, books including "Friends in the Park," a book for children, "Confronting The Challenges of Spina Bifida," "A Guide to Hydrocephalus," and a Clinic Directory. They also have videos including, "The Challenge Video Tape," and "How to Guide Your Child Through Special Education." A complete publication list is available from the above address. The Association collects information on physicians and researchers who treat/study the condition and disseminates this information to their membership. They provide information and referrals to other organizations and resources. Additionally, they host an annual conference. Call for further information.
The Spina Bifida Association of Canada has a mission to improve the quality of life of all individuals with spina bifida and/or hydrocephalus and their families. They serve the parents of children with spina bifida, adults with spina bifida and professional who work with them. They have local support groups and provide a directory of these groups. Some province chapters provide parent-to-parent matching, call a group in your area for further information.
SBAC publishes a quarterly newsletter, Podium, that is included in membership dues, and have several brochures available including, "Generic on Spina Bifida," "Generic on Hydrocephalus," and "Folic Acid Supplementation." They offer a new parent packet that gives a general overview or spina bifida, and have a bibliography of books and articles. They also have a lending library for Canadians. SBAC will provide referrals to other resources and providers. The Spina Bifida Association of Canada hosts a national conference; call for further information.
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