Brain Injury / Brain Tumor / Coma
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 patient driven online support network through Yahoo, listserv, Facebook, e-mail discussion group, phone support and international conferences. How-to materials for starting a support group are provided on website.
98 Random Farms Dr.
Chappaqua, NY 10514
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.
American Brain Tumor Association
8550 W. Bryn Mawr Ave., Ste. 550
Chicago, IL 60631
Voice: 1-800-886-2282 or 773-577-8750 (patient services)
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.
Brain Injury Association
1608 Spring Hill Rd., Suite 110
Vienna, VA 22182
Voice: 1-800-444-6443 (National Brain Injury Information Center) or 703-761-0750
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.
Coma/Traumatic Brain Injury Assoc.
8300 Republic Airport, Suite 106
Farmingdale, NY 11735
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.
Acoustic Neuroma Association
600 Peachtree Parkway, Suite 108
Cumming, GA 30041-6899
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 and treatment center listings, a monthly e-newsletter, conferences, literature, Patient Services Line, an online community, webinars, information and referrals. Assistance in starting and maintaining support groups.
National Brain Tumor Society
22 Battery St., Suite 612
San Francisco, CA 94111-5520
Voice: 1-800-934-2873 or 415-834-9970 (Mon.-Fri., 9am-8pm EST)
(BILINGUAL) National network. Founded 1988. Provides a family-to-family 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 Family Camps, Teen and Young Adult Heads Up Conferences at Camp Make-A-Dream, newsletter, annual teleconferences (available for replay on website) and funds research.
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)
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.
The Brain Trust
495 Broadway, Ste 302
Everett, MA 02149
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.
1100 Peninsula Blvd.
Hewlett, NY 11557
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 skullbase tumors welcome.
Online. Provides information, support, advocacy, resources and a means of communication for those diagnosed with benign brain tumors. Discussion groups, message boards, social events, videos and speaking engagements.
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