Spina bifida, and Allied Disorders Resources
To the MGH Developmental Neurosurgery homepage for more information about pediatric brain tumors, hydrocephalus, syringomyelia/syrinx, spina bifida/myelodysplasia, tethered spinal cord, Chiari malformation and related disorders
To the MGH Neurooncology Homepage for more information on on-line neuroncology resources.
Chairperson, Barbara White P.O. Box 1586 Longview,, TX 75606-1586 (214) 759-2469 (Voice) (800) ASAP-282
The American Syringomyelia Alliance Project Inc. (ASAP), is a national nonprofit organization founded in 1988. Its two main goals are to be a support network and information clearinghouse for people who have syringomyelia, a rare spinal cord disorder, and to promote future research. ASAP is also working towards coordinating the efforts of organizations in the U.S. working to improve the lives of syringomyelia victims; increase public awareness of the existence of the disorder and its devastation; secure a uniform, national Medicare policy providing coverage for current and future treatments of the disorder; inform victims of the latest efforts of doctors who are treating syringomyelia; and urge research efforts to find all causes, to develop new treatments, and to improve existing treatments.
Publications Publications include a newsletter, brochure and varied articles on syringomyelia.
2618 Avenue Z Brooklyn, , NY 11235-2023 (718) 743-4476 (Voice) (800) 458-8655 (Voice) (718) 743-1171 (Fax)
The Guardians of Hydrocephalus Research Foundation (GHRF) is a nonprofit group dedicated to research into the cause and treatment of hydrocephalus. The Foundation operates a laboratory in the Department of Neurology at New York University Medical Center, in which information from clinical and research facilities is integrated to provide for better diagnosis and treatment of hydrocephalus, a frequently-occurring congenital disorder that can also occur shortly after birth. Hydrocephalus accounts for a large proportion of adult patients with a diagnosis of dementia.
GHRF publishes a booklet on hydrocephalus. A videotape entitled, Hydrocephalus-A Neglected Disease, is available for rental or sale. Serial publication: Newsletter, quarterly--research findings, special schools and equipment, and fundraising.
870 Market Street, Suite 955 San Francisco, CA 94102 Phone: 415-776-4713
The Hydrocephalus Association was founded in 1983, incorporated as a nonprofit in 1986, is governed by a Board of Directors and employs, an Executive Director, Assistant Director, Director of Development and a Program Director part time. Medical Professionals serve in an advisory capacity.
The Hydrocephalus Association is funded through a combination of individual contributions, membership dues, grants from private business and foundations and an annual fund drive.
Outreach Program trains families to provide one-to-one personal support. Regional educational meetings in the greater San Francisco Bay Area including Palo Alto, Fremont, Rohnert Park, Fresno, and San Francisco. Social gatherings provide families an opportunity to share information and experiences. Networking with other support groups and organizations nationwide. Two day biannual National Conferences on Hydrocephalus for Families and Professionals featuring the nation's top neurosurgical specialists.
About Hydrocephalus - A book for Parents A 36 page booklet detailing all the aspects of hydrocephalus from diagnosis and treatment to complications and follow-up care. 25,000 copies have been distributed in six years. A Spanish edition will be available Summer, 1994.
The Resource Guide A comprehensive listing of 250 articles on all aspects of hydrocephalus. Articles may be ordered from the Association for a small fee.
The Directory of Pediatric Neurosurgeons Published in 1991, updated in 1994, the Directory is the first resource of its kind available to the general public. 162 neurosurgeons are listed with addresses, both alphabetically and geographically.
Quarterly Newsletter A 12 page newsletter is published quarterly.
Fact and Information Sheets The Series of ten topics include Adult Onset Hydrocephalus, Primary Care of
the Child with Hydrocephalus, Learning Disabilities in Children with
Hydrocephalus & Social Skills Development.
Link Program: A nationwide network of individuals listed in Directory format giving our members direct access to others in similar circumstances.
Directory of Hydrocephalus Support Groups Published in 1994, the Directory lists information on sixteen Hydrocephalusgroups nationwide.
All resources are free to families.
Debby Buffa, Chairperson PO Box 4236 Chesterfield, , MO 63006-4236 (314) 532-8228 (Voice)
Founded in 1986 the Hydrocephalus Support Group (HSG) is a nonprofit organization providing education and support to individuals with hydrocephalus and their families. Hydrocephalus results from an excess of cerebrospinal fluid in the brain and often accompanies Spina Bifada, Cerebral Palsy, and Cancer (brain tumors). HSG has bimonthly meetings for anyone interested, a quarterly newsletter, parent referrals, a library of over 140 articles and tapes on hydrocephalus, and HSG sponsors a one-day seminar on hydrocephalus every two years.
Publications include booklet, list of over 200 journal articles, 6 cassette tapes and a newsletter (quarterly).
The National Easter Seal Society, founded in 1919, is a voluntary health agency providing direct rehabilitation services to people with disabilities. The Society has affiliates in the 50 states, the District of Columbia, and Puerto Rico. Program services are provided by affiliates in over 400 locations throughout the country to people with any type of disability. Services vary by location but may include medical and vocational rehabilitation services, educational services, leisure programs, day care, client and family support groups, equipment loan, and information/referral. The Society's Washington office advocates passage and implementation of legislation providing equal rights to people with disabilities.
Publications: The National Easter Seal Society publishes a variety of booklets and pamphlets (some in Spanish) for people with disabilities, their families, teachers, therapists, and other professionals. A catalog lists publications related to: attitudes and awareness; legislation; dental care; independent living; prevention and safety; recreation and camping; speech, language, and hearing; stroke; and other disabilities.
400 N. Michigan Avenue Suite 1102 Chicago, , IL 60611-4102 (815) 467-6548 (Voice)
The National Hydrocephalus Foundation (NHF) was founded in 1980 to familiarize the public with hydrocephalus, a buildup of cerebrospinal fluid inside the head. The Foundation also seeks to remove stigma from those with hydrocephalus, collect and disseminate information, counsel parents on specific problems encountered as a result of hydrocephalus in their children, create a consumer pressure group to get government funding for research, obtain health insurance covering this disease, and to form local chapters to help accomplish these goals. The Foundation is supported by donations and membership fees and responds in particular to the disorder as a condition in itself, as opposed to hydorcephalus as a secondary condition of another disease.
Life-Line a quarterly NHF Newsletter, --news on projects, upcoming events, and advances in research.
4590 MacArthur Boulevard, NW Suite 250 Washington, , DC 20007-4226 (202) 944-3285 (Voice) (800) 621-3141 (Voice)
The Spina Bifida Association of America (SBAA), founded in 1972, is a nonprofit organization dedicated to making the public, professionals, and governmental agencies more aware about worldwide health efforts concerned with spina bifida. The Association is a network of chapters across the United States. In addition to its information functions, SBAA conveys to its members developments in the fields of medicine, education, and legislation that offer assistance; supports research into the causes and prevention of spina bifida; promotes the comprehensive treatment of persons with spina bifida; and encourages the training of competent professionals dealing with the care of people with spina bifida.
SBAA publishes a number of informational brochures and reports about spina bifida for both children and adults and educational videotape programs for parents and health professionals. SBAA also has produced a 35mm slide presentation on the abilities and potential of people with spina bifida. Serial publication: Insights (newsletter), bimonthly news and discussions on living with spina bifida.