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Brain Injury / Brain Tumor / Coma

Self Help Clearinghouse

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.

Brain Injury Association, Inc.

National. 26 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 (National Brain Injury Information Center) or 703-761-0750
Fax: 703-761-0755
Website: http://www.biausa.org
E-mail: braininjuryinfo@biausa.org
Verified: 7/16/2013

Acoustic Neuroma Association

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 ($45/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: 1-877-202-023
Website: http://www.anausa.org
Verified: 9/10/2013

National Brain Tumor Society

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.
Write:
National Brain Tumor Society
124 Waterton St. Ste 2D
Boston, MA 02472
Voice: 617-924-9997
Fax: 617-924-9998
Website: http://www.braintumor.org
E-mail: info@braintumor.org
Verified: 9/3/2013

Children's Brain Tumor Foundation, Inc.

(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.
Write:
Children's Brain Tumor Foundation
274 Madison Ave., Suite 1004
New York, NY 10016
Voice: 1-866-228-4673
Fax: 212-448-1022
Website: http://www.cbtf.org
E-mail: info@cbtf.org
Verified: 9/13/2013

BRAIN TRUST, The Healing Exchange

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.
Write:
The Brain Trust
495 Broadway, Ste 302
Everett, MA 02149
Website: http://www.braintrust.org
E-mail: info@braintrust.org
Verified: 1/16/2013

Musella Foundation

National. Provides emotional support and exchange of information for patients with various brain tumors and their families. Information on research, medication and clinical trials. Co-payment assistance program for glioblastoma multiforme patients. Chatrooms, support groups, video library and other resources.
Write:
Musella Foundation
1100 Peninsula Blvd.
Hewlett, NY 11557
Website: http://www.virtualtrials.com
E-mail: musella@virtualtrials.com
Verified: 9/13/2013

PLGA Foundation d.b.a. A Kids' Brain Tumor Cure

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.
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: 9/13/2013

It's Just Benign

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.
Website: http://www.itsjustbenign.org
E-mail: itsjustbenign@gmail.com
Verified: 7/16/2013

Georgia Brain Talk

Georgia's Brain Injury Tele-Conference Support Group * Model. Provides support and education to survivors of traumatic brain injuries through telephone groups and teleconferencing. Provides coping strategies for those who are not able to travel to on-site groups. Teleconference group meets 2nd and 4th Thurs., 7-8pm.
Voice: Bill DeAngelo 678-880-0411 or 1-800-451-9108
Website: http://www.georgiabraintalk.com
E-mail: billjet17@yahoo.com
Verified: 9/13/2013

PBT Parents of Angels

Online. Provides support for parents who are facing end of life issues with a child who has a brain tumor and to provide extended support for parents of children who have passed away after battling a brain tumor.
Website: http://groups.yahoo.com/neo/groups/pbtangels
E-mail: pbtangels-owner@yahoogroups.com
Verified: 9/12/2013

LGgliomakids - Low Grade Glioma Kids

Online. 500+ members. Support group for parents of children with low grade gliomas of any time, including juvenile pilocytic astrocytoma (JPA), pilomxyoic astrocytoma (PMA), pleomorthic xanthoastrocytoma (PXA), fibrillary astrocytoma, oligodendroglioma or ganglioglioma, including those with multifocal or disseminated low grade gliomas. Group welcomes all location to include: brainstem, ceregellar, thalamic, hyporhalamic, cerebral, tectal plate and optic pathway.
Website: http://groups.yahoo.com/neo/groups/lggliomakids/info
E-mail: lggliomakids-owner@yahoogroups.com
Verified: 9/12/2013

Diffuse Intrinsic Pontine Glioma (DIPG) Support

Online. 630+ members. Support for parents, family and friends of children diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a brainstem glioma (turmor). Medical professionals are also welcome.
Website: http://groups.yahoo.com/neo/groups/dipg/info
E-mail: dipg-owner@yahoogroups.com
Verified: 9/12/2013

Cerebellarmutism Support

Online. 300+ members. Support group of parents, friends and medical practitioners of children with brain turmors (medulloblastoma, astrocytoma, ependymoma, rhabdoid, choroid papilloma as well as others) who suffered from cerebellar mutism and posterior fossa syndrome after brain tumor removal. Members can access a 52 page web based resource guide for children with brain tumors.
Website: http://groups.yahoo.com/neo/groups/cerebellarmutism/info
E-mail: cerebellarmutism-owner@yahoogroups.com
Verified: 9/12/2013

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