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Spinal Cord Injury, Stroke, and Paralysis Guide to Support Organizations

This page contains address and contact information for organizations providing support for and education of patients with spinal injuries and their families and friends. Links to on-line information about spinal cord injury and rehabilitation can be found on the MGH/Harvard Neurosurgical Service Spine Surgery Homepage.

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 Spine Surgery Homepage for more information on on-line spine surgery and rehabilitation resources.

To the MGH Neurovascular Surgery Homepage for more information on the prevention and rehabilitation of stroke.

American Association of Spinal Cord Injury Psychologists and Social Workers

75-20 Astoria Blvd.
Jackson Heights, NY 11370-1177

American Paralysis Association

500 Morris Avenue
Springfield, NJ 07081

American Paralysis Association Homepage

American Syringomyelia Alliance Project, Inc.

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.

The National Easter Seal Society

230 W. Monroe St., Suite 1800
Chicago, IL 60606
(800) 221-6827
(312) 726-6200 (Local Voice)
(312) 726-4258 (TDD)

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.

National Institute of Neurological Disorders and Strokes

P.O. Box 5801
Bethesda, MD 20824

National Rehabilitation Hospital Stroke Recovery Program

102 Irving St., N.W.
Washington, D.C. 20010-2921

National Spinal Cord Injury Association

545 Concord Avenue, Suite 29
Cambridge, MA 02138
(617) 441-8500 (Voice)
(617) 441-3449 (Fax) (URL)

The National Spinal Cord Injury Association, formerly the National Paraplegia Foundation, is a civilian membership organization founded in 1948 by the Paralyzed Veterans of America to develop comprehensive systems of quality care for persons with spinal cord injuries. Through its nationwide network of chapters, the Association assists in the development of comprehensive systems of care; provides information and referral services geared to the newly injured; offers educational programs for professionals, constituents, and the public; promotes technological and environmental research aimed at preventing spinal cord injuries; and promotes clinical research designed to improve care. In order to facilitate the integration of persons with spinal cord injuries into community life, the Association provides peer counseling services through its local chapters, promotes full implementation of sections 503 and 504 of the 1978 Rehabilitation Act and the ADA, and promotes an attitudinal and physical environment conducive to wheelchair use.

Publications: The Association publishes national and local resource directories relevant to the needs of persons with spinal cord injuries; and informational booklets. Serial publication: Spinal Cord Injury Life (newsletter), quarterly.

National Stroke Association

96 Inverness Drive East, Suite I
Englewood, CO 80112
(303) 649-1328 (Voice)
(800) 649-1328 (Fax)

The National Stroke Association (NSA), founded in 1984, is a nonprofit organization dedicated to educating stroke survivors, families, health care professionals, and the general public about stroke. It seeks to reduce the incidence and effects of stroke through activities related to prevention, medical care, research, rehabilitation, and resocialization. NSA develops and distributes educational materials and a newsletter; publishes a stroke journal and professional newsletter; operates a national clearinghouse for information and referral; promotes research and disseminates research findings; advocates; develops workshops; and provides guidance in developing stroke clubs and stroke support groups.

Publications: NSA publishes other booklets and brochures, of interest to stroke survivors, families and other caregivers, and health care professionals on stroke-related subjects. NSA publications: The Road Ahead: A Stroke Recovery Guide--a book published in 1986, revised 1992 for stroke survivors, family members, and health care professionals; Be Stroke Smart--a group of one-page articles on stroke for stroke survivors, families, and health care professionals. A complete list of titles and prices is available on request.

Paralyzed Veterans of America

Communication Program
801 18th Street, NW
Washington, , DC 20006
(202) 872-1300 (Voice)
(800) 424-8200 (Voice)

The Paralyzed Veterans of America (PVA) was founded in l946 as a national service organization to meet the needs of veterans who were paralyzed as a result of disease or injury to the spinal cord. PVA is supported by donations from the general public. It works to ensure quality health care, rehabilitation, and full civil rights for veterans with spinal cord injuries or diseases, and all persons with a disability. PVA supports legislation and advances in medicine and technology through various programs, activities, and such departments as: the Spinal Cord Research Foundation; Education and Training Foundation; National Research Program; National Advocacy Program; National Legislation Program; National Veterans Benefits Program; and a National Sports and Recreation Program.

Publications : PVA distributes publications and videotapes about the organization, its activities, and on various aspects of spinal cord impairment. Serial publications: Paraplegia News (magazine), monthly--news and features of interest to people with spinal cord impairments; Sports and Spokes (magazine), bimonthly--covers the activities of those involved in wheelchair competitive sports and recreation.

Spinal Cord Society

Wendell Road
Fergus Falls, MN 56537
(218) 739-5252 (Voice)

The Spinal Cord Society (SCS) is an advocacy organization that works to seek a cure for spinal cord injuries. Founded in 1978, it has over 180 volunteer chapters in the United States and other countries. The SCS supports a research program, a clinical center, and a computerized data and referral service. The SCS coordinates with other medical facilities and is working with them to establish a cure for spinal cord injury paralysis. The Society is supported by membership fees and contributions.

Publications: Spinal Cord Society Newsletter, monthly--news of SCS activities, research, meetings, and services.

Spina Bifida Association of America

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.

Stroke Connection/ American Heart Association National Center

7272 Greenville Ave.
Dallas, TX 75231-4596

The Courage Stroke Network was established in 1979 to link stroke survivors, their family members, and the professionals who serve them by providing a forum for sharing knowledge and experiences related to living with stroke. The Network promotes the development of stroke support groups and disseminates information and educational materials on stroke, and provides information about local stroke groups through a toll-free number. Through the Stroke Seminar, the Network invites the sharing of ideas and information and introduces stroke survivors to techniques of coping with stroke. The Stroke Outreach Program trains stroke survivors and caregivers to provide supportive visiting to other stroke survivors and their families. The Network also acts as a national advocate for stroke survivors and their families.

Publications: Stroke Connection (newsletter), six issues per year--articles on stroke, many written by stroke survivors.

To the MGH Developmental Neurosurgery homepage for more information about syringomyelia/syrinx, spina bifida/myelodysplasia, tethered spinal cord, and related disorders

To the MGH Spine Surgery Homepage for more information on on-line spine surgery and rehabilitation resources.

To the MGH Neurovascular Surgery Homepage for more information on the prevention and rehabilitation of stroke.

To the MGH Neurosurgery Staff or theMGH Physician Referral Service hompages.

Disclaimer About Medical Information: The information and reference materials contained herein is intended solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient's own physician. All visitors to this and associated sites from the Neurosurgical Service at MGH agree to read and abide by the the complete terms of legal agreement found at the Neurosurgery "disclaimer & legal agreement." See also: the MGH Disclaimer, the MGH Privacy Policy, and the MGH Interactive Program Disclaimer - Copyright 2005.
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Last modified: May 11, 2005