Brain & Nervous System Health Center

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Brain Injury / Brain Tumor / Coma

National. Founded 1973. Provides support to brain tumor patients. Offers pen pal program, free patient education materials, newsletter, publications and resource listings. Dedicated to eliminating brain tumors through funding and encourage research. Support group referrals and assistance in starting groups.
Write:
American Brain Tumor Association
2720 River Rd.
Des Plaines, IL 60018
Voice: 1-800-886-2282 or 847-827-9910 (patient services)
Fax: 847-827-9918
Website: http://www.abta.org
E-mail: info@abta.org
Verified: 10/14/2010

National. 42 state associations. 600 affiliated groups. Founded 1980. Advocacy organization providing services to persons with brain injuries, their families and professionals. Increases public awareness through state associations, support groups, information and resource network, seminars, conferences, literature and prevention programs. Guidelines for starting similar groups.
Write:
Brain Injury Association
1608 Spring Hill Rd., Suite 110
Vienna, VA 22182
Voice: 1-800-444-6443 or 703-761-0750
Fax: 703-761-0755
Website: http://www.biausa.org
E-mail: braininjuryinfo@biausa.org
Verified: 10/13/2010

National network. Founded 1980. Support and advocacy for families of coma and traumatic brain injury survivors. Provides information, referrals and support group for family members and survivors. Quarterly newsletter and yearly conferences for families, brain injury professionals and survivors.
Write:
Coma/Traumatic Brain Injury Association
8300 Republic Airport, Suite 106
Farmingdale, NY 11735
Voice: 631-756-1826
Website: http://www.comarecovery.org
E-mail: inquiry@comarecovery.org
Verified: 10/14/2010

National. 53 affiliated groups. Founded 1981. Support and information for patients who have been diagnosed with acoustic neuroma, a benign tumor affecting the 8th cranial nerve. Quarterly newsletter ($40/yr.), nationwide support group network, biennial national symposium and patient information booklets.
Write:
Acoustic Neuroma Association
600 Peachtree Parkway, Suite 108
Cumming, GA 30041-6899
Voice: 1-877-200-8211 or 770-205-8211
Fax: 1-877-202-0239
Website: http://www.anausa.org
Verified: 10/13/2010

National. Support and information for persons with brain tumors and their loved ones. Provides funding for research as well as client services for brain tumor patients and family members. Offers support group listings, a quarterly newsletter, conferences, literature, support line, information and referrals. Assistance in starting and maintaining support groups.
Write:
National Brain Tumor Society
22 Battery St., Suite 612
San Francisco, CA 94111-5520
Voice: 1-800-934-2873 or 415-834-9970
Fax: 415-834-9980
Website: http://www.braintumor.org
E-mail: info@braintumor.org
Verified: 5/18/2010

(BILINGUAL) National network. Founded 1988. Provides a Parent-to-Parent Network to link parents of a child with a brain or spinal cord tumor with another parent with similar experiences for information and support. Offers free resource guide (English/Spanish), 'Parker's Brain Storm' (a book for children), Brain Tumor Week at Camp Sunshine, newsletter, annual teleconferences (available for replay on website) and funds research.
Write:
Children's Brain Tumor Foundation
274 Madison Ave., Suite 1004
New York, NY 10016
Voice: 1-866-228-4673 or 212-448-9494 (Mon.-Fri., 9am-5pm EST)
Fax: 212-448-1022
Website: http://www.cbtf.org
E-mail: info@cbtf.org
Verified: 12/15/2009

Online. Founded 1993. Mission is to exchange support and information among people affected by brain tumors and related conditions including patient-survivors, families, caregivers and health professionals. Online support groups cover a large range of brain tumors, acquired injuries and other special interests.
Website: http://www.braintrust.org
Verified: 10/13/2010

National. Provides emotional support and exchange of information for patients with various brain tumors and their families. Information on research, medication and clinical trials. Chatrooms, support groups, video library and other resources.
Write:
Musella Foundation
1100 Peninsula Blvd.
Hewlett, NY 11557
Voice: 1-888-295-4740
Fax: 516-295-2870
Website: http://www.virtualtrials.com
E-mail: musella@virtualtrials.com
Verified: 10/14/2010

Online. Founded 1982. Virtual support group includes online chatroom, message board and moderated chat events. Support groups meet monthly in many Canadian communities.
Website: http://www.braintumour.ca
Verified: 10/13/2010

International. Founded 2006. Support for families and caregivers of children suffering from low grade brain tumors (juvenile pilocytic astrocytoma, low grade glioma or pediatric brain tumor). Offers moderated message board, listserv, e-mail discussion group, phone support and international conferences. How-to materials for starting a support group are provided on website.
Write:
PLGA Foundation
98 Random Farms Dr.
Chappaqua, NY 10514
Voice: 914-762-3494
Website: http://www.fightplga.org
E-mail: contact@fightplga.org
Verified: 12/10/2009

Online. 188 members. Founded 2009. Opportunity for patients, family and friends to offer support, friendship, understanding and shared experiences. Members share information and resources for the treatment of Chordoma tumors and the day-to-day management of the disease. People with other skull base tumors welcome.
Website: http://ca.groups.yahoo.com/group/chordoma_support_group
Verified: 6/1/2010

The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.

For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp

If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org

WebMD Medical Reference from the American Self-Help Clearinghouse

Last Updated: May 11, 2011

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.