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The following resources related to Hydrocephalus are from the book Hydrocephalus: A Guide for Patients, Families, and Friends by Chuck Toporek & Kellie Robinson, copyright 1999, published by O'Reilly & Associates, Inc. To order, or get more information about this book, call 1-800-998-9938. Permission is granted to print and distribute this list of resources for noncommercial use as long as the above source is included. This information is meant to educate and should not be used as an alternative for professional medical care.

Hydrocephalus and related disorders (U.S. and Canada)

Hydrocephalus Association
Emily S. Fudge, Executive Director
Jennifer Henerlau, Assistant Director
Pip Marks, OutReach Coordinator
870 Market Street, Suite 955
San Francisco, CA 94102
Phone: (415) 732-7040
Fax: (415) 732-7044

The Hydrocephalus Association is a nonprofit organization, founded in 1983, that provides support, education, and advocacy to individuals, families, and professionals. Their goal is to provide comprehensive services to empower individuals and families to seek out the best medical care, programs and resources that will meet their needs now and in the future.

Hydrocephalus Association of North Texas (HANT)
Jana Dransfield
P.O. Box 670552
Dallas, TX 75637-0552
Phone: (214) 528-2877
Fax: (214) 528-8097

Hydrocephalus Family Support Group of Central Florida
Pediatric Neurosurgery
Kay Taylor, R.N.
22 Lake Beauty Drive, Suite 204
Orlando, FL 32806-2040
Phone: (407) 649-7686
Fax: (407) 649-7692

Hydrocephalus Foundation, Inc. (HyFI)
Greg Tocco, Executive Director and Founder
910 Rear Broadway
Saugus, MA 01906
Phone: (617) 942-1161

The Hydrocephalus Foundation was established to help assist patients and their families during the transition from their diagnosis to a resumption of their normal lifestyles. The primary focus of the Hydrocephalus Foundation is to contribute emotional support to patients of hydrocephalus and their families. The foundation will promote and encourage research that assists in the comprehensive treatment of people with hydrocephalus and the training of competent professionals.

Hydrocephalus Research Foundation
Ann Marie Liakos, Executive Director
1670 Green Oak Circle
Lawrenceville, GA 30243
Phone: (770) 995-9570

Hydrocephalus Support Group, Inc. (HSG)
Debby Buffa, Founder/Chairman
P.O. Box 4236
Chesterfield, , MO 63006-4236
Phone: (314) 532-8228
Fax: (314) 995-4108

The Hydrocephalus Support Group, Inc. (HSG) is a nonprofit organization providing education and support to individuals with hydrocephalus and their families. HSG has periodic meetings for anyone interested, a quarterly newsletter, parent referrals, and a library with more than 300 articles and tapes on hydrocephalus. HSG sponsors a one-day conference on hydrocephalus every year.

National Hydrocephalus Foundation (NHF)
Debbi Fields, Executive Director
12413 Centralia
Lakewood, CA 90715-1623
Phone: (562) 402-3523

The National Hydrocephalus Foundation (NHF) was incorporated in 1980 as a voluntary, nonprofit, 501(c)3, public service organization. The objectives of NHF are:

To assemble and disseminate information pertaining to hydrocephalus, its treatments and outcomes. To establish and facilitate a communication network among affected families and individuals. To help others gain a deeper understanding of those areas affected by hydrocephalus, such as education, insurance, tax and estate planning, employment and family. To increase public awareness and knowledge of hydrocephalus. To promote and support research on the causes, treatment and prevention of hydrocephalus.

In addition to providing the public with informational pamphlets, the NHF maintains a reference library and videos on hydrocephalus, promotes and helps support groups, and offers parent-to-parent and adult-to-adult referrals. NHF also issues a quarterly newsletter, Life-Line. The Foundation is supported by donations and membership fees.

Pregnancy and Maternal Hydrocephalus Database
Nancy Bradley, Coordinator
8403 Boyne Street
Downey, CA 90242
Phone: (562) 869-3689

Seeking Techniques Advancing Research in Shunts (STARS)
Parent Support Group
Hydrocephalus/Shunt Research Fund Raising
Rosemary Ricelli
Steve Scheidt
1289 N. Glenhurst
Birmingham, MI 48009
Phone: (248) 644-STAR
Fax: (248) 647-5711

Related disorders

National Organization of Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812
Phone: (203) 746-6518; or (800) 999-6673

Arnold-Chiari Malformation

World Arnold-Chiari Malformation Association
31 Newtown Woods Road
Newtown Square, PA 19073
Phone: (610) 353-4737

Attention deficit disorder

Children and Adults with Attention Deficit Disorders (CHADD)
499 N.W. 70th Avenue, Suite 101
Plantation, FL 33317
Phone: (800) 233-4050
Fax: (954) 587-4599

Children and Adults with Attention Deficit Disorders (CHADD) is a nonprofit organization that was started by parents of children with attention deficit disorder (ADD) and professionals who work with such children. The objectives of CHADD include maintaining support groups for parents, providing a forum for continuing education, being an information resource, and ensuring that the best educational experiences are available to children and adults with ADD. CHADD sponsors a national conference on ADD, and also publishes Attention! Magazine, the premiere magazine written for people with ADD/ADHD and those who work with them. CHADD's web site provides a listing of local chapters in the United States.

National Attention Deficit Disorder Association (ADDA)
9930 Johnnycake Ridge Road, Suite 3E
Mentor, OH 44060
Phone: (440) 350-9595; or (800) 487-2282
Fax: (440) 350-0223

ADDA's mission is to help people with ADD lead happier, more successful lives through education, research, and public advocacy. Whether you have ADD yourself or someone special in your life does, or if you treat, counsel, or teach those who do, ADDA is an organization for you. ADDA is especially focused on the needs of ADDults and young adults with ADD. Parents of children with ADD are also welcome.

ADDA's mission is not only to educate, teach, and lobby for rights, but to cultivate and rally the varied talents from within the ADD community. ADDA supports training, conferences, and research into ADD's causes and treatment. Through a growing Support Group Network, ADDA is working to help people discover how to cope with the challenges of ADD, while celebrating and leveraging its many positive aspects.

Brain tumor/head injury

Brain Injury Association USA
105 North Alfred Street
Alexandria, VA 22314
Phone: 703-236-6000
Fax: 703-236-6001

Brain Tumor Foundation of Canada
650 Waterloo Street, Suite 100
London, ON Canada, N6B 2R4
Phone: 519-642-7755
Fax: 519-642-7192

National Brain Tumor Society
East Coast Office
124 Watertown Street, Suite 2D
Watertown, MA 02472
Phone: 617 924 9997
Fax: 617 924 9998

West Coast Office
22 Battery Street, Suite 612
San Francisco, CA 94111-5520
Phone: 415 834 9970
Fax: 415 834 9980

Patient Services
800 934 2873

800 770 8287

National Head Injury Foundation (NHIF)
1776 Massachusetts Avenue, N.W.
Suite 100
Washington, DC 20036
Phone: (800) 444-6443; or (202) 296-6443
Fax: (202) 296-8850

Diabetes insipidus

Nephrogenic Diabetes Insipidus Foundation (NDIF)
Main Street
P.O. Box 1390
Eastsound, WA 98245
Phone: 888-376-6343
Fax: 888-376-3842


The Cleveland Clinic Foundation
Departments of Neurology and Neurological Surgery
9500 Euclid Avenue
Cleveland, Ohio 44195-5125
Phone: (216) 444-5559; or (800) 223-2273, ext. 45559
Fax: (216) 444-0266
TTY: (216) 444-0261

The Cleveland Clinic Foundation's Epilepsy Center, formed in 1978, is a national and international pacesetter in the treatment of epilepsy in both children and adults. They provide a comfortable, caring environment where they do everything possible to bring seizures under control.

The Epilepsy Foundation
4351 Garden City Drive
Landover, MD 20785-2267
Phone: (301) 459-3700; or (800) EFA-1000
Fax: (301) 577-2684

The Epilepsy Foundation, founded in 1968, is a network of more than 60 affiliated organizations offering services in 125 communities across the United States. National programs include a toll-free public information and referral service, research, professional education, public and family education, legal and legislative advocacy, and employment assistance. Local affiliate services may include outreach to schools and the community, support groups, camping, information and referral, employment services, respite care, and help with living arrangements for families. The Epilepsy Foundation also publishes a quarterly newsletter, In Touch, which provides tips and stories by people who have seizures and epilepsy.

Spina bifida

Spina Bifida Association of America
590 MacArthur Blvd. N.W., Suite 250
Washington, DC 20007-4226
Phone: (202) 944-3285; or (800) 621-3141
Fax: (202) 944-3295

Spina Bifida and Hydrocephalus Association of Canada (SBHAC)
220-388 Donald Street
Winnipeg, MB Canada
R3B 2J4
Phone: (204) 957-1784; or (800) 565-9488
Fax: (204) 957-1794

Hydrocephalus organizations (international)

Arbeitsgemeinschaft Spina bifida und Hydrocephalus e.V. (ASbH e.V.)
D-44145 Dortmund
Phone: (0231) 86 10 50-0
Fax: (0231) 86 10 50-50

Association for Spina Bifida and Hydrocephalus (ASBAH)
Teresa Cole, Vice President
42 Park Road
Peterborough, United Kingdom
Phone: 01733 555988
Fax: 01733 555985

ASBAH, the Association for Spina Bifida and Hydrocephalus, was formed in 1966 and serves England, Wales and Northern Ireland. Through a network of professional advisers backed up by specialists in mobility, continence management, education, and medical matters, ASBAH provides advice and practical support to people with these disabilities, their families, and their care providers. ASBAH aims to improve services for people with spina bifida and/or hydrocephalus, to work with them to extend their choices, and maximize opportunities for independence and achievement. The Federation holds annual conferences in a different continent each year, and runs workshops and projects in developing countries.

International Federation for Hydrocephalus and Spina Bifida
13D Chemin du Levant
F-01210 Ferney-Voltaire
Phone: +33 (0) 450 40 01 02
Fax: +33 (0) 450 40 01 19

The International Federation for Hydrocephalus and Spina Bifida (if) is the worldwide umbrella organization for these two disabilities and has a contact network on every continent. Its members are national organizations for spina bifida and hydrocephalus in more than 30 countries. These national organizations support people with spina bifida and hydrocephalus in their daily lives.

Irish Association for Spina Bifida and Hydrocephalus
Claire Gill, Hon Secretary, Irish ASBAH
Old Nangor Road
Clondalkin, Dublin 22
Phone: Dublin 003531 4572326

New Zealand Spina Bifida Trust
P.O. Box 19281
Avondale, Auckland
New Zealand

Scottish Spina Bifida Association
National Office
190 Queensferry Road
Edinburgh, Scotland
Phone: (0131) 332 0743
Fax: (0131) 343 3651

Spina Bifida Group of New South Wales
P.O. Box 4055
Parramatta, NSW 2124

The Spina Bifida Association of Western Australia (Inc.)
37 Hampden Road
Nedlands, Western Australia 6009
Phone: (08) 9389 8311; or +61 8 9389 8311 (international)
Fax: (08) 9389 8331; or +61 8 9389 8331 (international)

Disability and neurological organizations

The National Information Center for Children and Youth with Disabilities (NICHCY)
P.O. Box 1492
Washington, DC 20013
Phone: (202) 884-8200 (V/TTY); or (800) 695-0285 (V/TTY)
Fax: (202) 884-8441

NICHCY is the national information and referral center that provides information on disabilities and disability- related issues for families, educators, and other professionals. Our special focus is children and youth (birth to age 22).

National Institute for Neurological Disorders and Stroke (NINDS)
Office of Scientific and Health Reports
P.O. Box 5801
Bethesda, MD 20824
Phone: (800) 352-9424; or (301) 496-5751

The NINDS is an agency of the U.S. federal government and a component of the National Institutes of Health (NIH) and the U.S. Public Health Service. NINDS is the lead agency for the congressionally designated Decade of the Brain, and the leading supporter of biomedical research on disorders of the brain and nervous system.

The National Parent Network on Disabilities (NPND)
Patty McGill Smith, Executive Director
1200 G Street N.W., Suite 800
Washington, DC 20005
Phone: (202) 434-8686 (V/TDD)
Fax: (202) 638-7299

NPND was established to provide a presence and national voice for parents of children, youth, and adults with special needs. NPND shares information and resources in order to promote and support the power of parents to influence and affect policy issues concerning the needs of people with disabilities and their families.

TASH (formerly the Association for People with Severe Handicaps)
29 Susquehanna Avenue, Suite 210
Baltimore, MD 21204
Phone: (410) 828-8274
Fax: (410) 828-6706
TDD: (410) 828-1306

TASH is a nonprofit international advocacy association of people with disabilities, their family members, other advocates, and people who work in the disability field. There are 38 chapters and members from 34 different countries and territories. Since its inception in 1974, TASH has gained international acclaim for its uncompromising stand against separatism, stigmatization, abuse and neglect. TASH actively promotes the full inclusion and participation of persons with disabilities in all aspects of life. TASH believes that no one with a disability should be forced to live, work, or learn in a segregated setting, that all individuals deserve the right to direct their own lives. TASH's mission is to eliminate physical and social obstacles that prevent equity, diversity, and quality of life.

TASH is a civil rights organization for, and of, people with mental retardation, autism, cerebral palsy, physical disabilities, and other conditions that make full integration a challenge. TASH is a member-based organization. Members of TASH receive a monthly newsletter, the Journal of the Association of Persons with Severe Handicaps, and also receive a reduced registration fee for attending their annual conference.

Medical and professional associations

American Academy of Neurology (AAN)
1080 Montreal Avenue
St. Paul, MN 55116-2325
Phone: (612) 695-1940
Fax: (612) 695-2791

The American Academy of Neurology publishes the monthly journal, Neurology, and provides fact sheets and brochures on various neurological disorders, including brain tumors, epilepsy, headache, and head injuries. Their brochure, Epilepsy: What You Should Know, includes useful information for patients who have epilepsy. They also have a section on their web site called Neurology News, which provides people with the latest information on neurologic disorders.

American Association of Neurological Surgeons (AANS)
22 South Washington Street
Park Ridge, IL 60068-4287
Phone: (847) 692-9500
Fax: (847) 692-2589
Web: or

American Board of Clinical Neuropsychology
Department of Psychiatry
The University of Michigan Hospitals
1500 East Medical Center Drive
Ann Arbor, Michigan 48109-0704
Phone: (734) 936-8269
Fax: (734) 936-9761

The American Board of Clinical Neuropsychology (ABCN) is the affiliated specialty board of the American Board of Professional Psychology (ABPP), which is responsible for the examination for the diploma in Clinical Neuropsychology.

American Board of Professional Neuropsychology (ABPN)
Michael J. Raymond, Ph.D.
Director, Neuropsychological/Cognitive Services
Allied Services
John Heinz Institute of Rehabilitation Medicine
150 Mundy Street
P.O. Box 2096
Wilkes-Barre Township, PA 18702
Phone: (717) 826-3800
Fax: (717) 826-3898

The American Board of Professional Neuropsychology (ABPN) was created by a group of clinical neuropsychologists in response to the growing need to formally assess competency in the practice of clinical neuropsychology. The ABPN maintains a directory of neuropsychologists who have received the ABPN's diploma.

American Board of Medical Specialties (ABMS)
1007 Church Street, Suite 404
Evanston, Illinois 60201-5913
Phone: (847) 491-9091
Fax: (847) 328-3596

American Board of Neurological Surgery (ABNS)
6550 Fannin Street
Suite 2139
Houston, TX 77030-2701
Phone: (713) 790-6015
Fax: (713) 794-0207

American Board of Pediatric Neurological Surgery (ABPNS)
930 Madison Avenue
Suite 600
Memphis, TN 38103

American Society of Pediatric Neurosurgeons (ASPN)

International Neuropsychological Society
700 Ackerman Road, Suite 550
Columbus, Ohio 43202-1559
Phone: (614) 263-4200
Fax: (614) 263-4366

The International Neuropsychological Society is dedicated to promoting research, service, and education in neuropsychology, and to enhancing communication among the scientific disciplines that contribute to the understanding of brain-behavior relationships. The Society has more than 3,500 members worldwide.

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