Resources- Specific Diagnosis Card Catalog- Brain Tumors

Who to Contact

The Children's Brain Tumor Foundation (CBTF)
274 Madison Avenue, Suite 1301
New York, New York, USA 10016
(212) 448-9494
Fax: (212) 448-1022
Toll-free: 866-228-HOPE
Web: www.cbtf.org

The Children's Brain Tumor Foundation's mission is to improve treatment, quality of life and the long term outlook for children with brain and spinal cord tumors by funding, basic, clinical and applied research, state of the art therapies, professional information and education, and patient and family support. They have local chapters, call for the nearest location.

The Children's Brain Tumor Foundation has a yearly newsletter and a resource guide for parents of children with brain or spinal cord tumors.

Childhood Brain Tumor Foundation
20312 Watkins Meadow Drive
Germantown, MD 20876
(301) 515-2900
Toll-free: (877) 217-4166
Web: www.childhoodbraintumor.org

The Childhood Brain Tumor Foundation was founded by families, friends and physicians of children with brain tumors. Our mission is to raise funds for scientific research and heighten public awareness of this most devastating disease and to improve prognosis and quality of life for those that are affected.

The Brain Tumor Society
124 Watertown Street, Suite 3-H
Watertown, MA 02472
1-800-770-TBTS (8287)
Voice (617) 924-9997
Fax (617) 924-9998
Web: www.tbts.org

The Brain Tumor Society exists to find a cure for brain tumors. It strives to improve the quality of life of brain tumor patients and their families. It disseminates educational information and provides access to psycho-social support. It raises funds to advance carefully selected scientific research projects, improve clinical care and find a cure. It also has a mission to aggressively raise and grant funds to stimulate and support carefully selected basic scientific research projects, helps educate the medical community, patients and families about brain tumors; to raise public awareness; to facilitate early diagnosis and treatment, and to effect a cure, and is involved in support issues to help patients and families better deal with the catastrophic problem of a brain tumor.

Where to go to Chat with Others?

Lighthouse
A network of parents and other caregivers of children suffering from pediatric brain tumors and spinal cord tumors. Our network also includes bereaved parents of such children. Please join us if you have a child younger than 21 with a brain or spinal cord tumor and you live in Iowa, Minnesota, Wisconsin, Illinois, Nebraska, Missouri, North Dakota, or South Dakota.

Hypothalamic Hamartoma Information and Support Share Group
Rare brain tumor present since birth. Most common side effects include behavior outbursts, gelastic or laughing seizures, cognitive problems and early signs of puberty.

Pediatric Brain Tumor Angels
This group has been established to provide 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 angels who graduated to Heaven after battling a brain tumor.

Cerebella Mutism
A site for parents and medical professionals to share their experiences/information on cerebellar mutism - this site is primarily for support group of parents/friends of children with brain tumors (medulloblastoma, astrocytoma, ependymoma, rhabdoid, choroid papilloma as well as others) who suffered from cerebellar mutism and posterior fossa syndrome after brain tumor removal.

Pediatric Brain Tumors
This list is for the discussion of all Pediatric Brain Tumors, primarily by parents and immediate family. However, we also welcome all medical professionals both involved in the diagnosis and treatment (Including but not limited to Pediatric Hematologists, Oncologists, and Neuro-psychologists, child life associates and social workers).

Brain Tumor Research & Support
A forum to discuss topics related to all types of brain tumors whether benign or malignant. Information and experience is shared among brain tumor patients, their families & supporters, all kinds of concerned medical professionals, medical educators, and researchers who study brain tumor growth or treatment.

Learn More About It

Brain Stem Gliomas in Childhood
The Childhood Brain Tumor Foundation

A Primer of Brain Tumors
American Brain Tumor Association

Brain Tumors: Frequently Asked Questions
John Hopkins

Brain Tumor Symptoms
From The Brain Tumor Society

Out of the Blue: A Guide for the New Patient

Links

The Children's Brain Tumor Foundation, Inc.

American Brain Tumor Association

Pediatric Brain Tumor Foundation

ABTA Kids
A web site about brain tumors designed just for kids. From the American Brain Tumor Association

Glioblastoma Database and Newsletter

Young Adults Surviving Glioblastoma
A positive resource for young survivors of gliblastoma, survivor biographies, treatments, support, photos and more.

The Brain Tumor Society

Massachusetts General Hospital Brain Tumor Center

Glioblastoma Research Foundation

Brain Tumour Foundation of Canada

Johns Hopkins Brain Tumor Radiosurgery Web site

Brain Tumor Treatment & Research - St. Jude Children's Research Hospital

Lighthouse SOS a system of support for families of pediatric brain and spinal cord tumors.

Hypothalamic Hamartoma Support Page - Rare brain tumor present at birth

Cerebellar Mutism/Posterior Fossa Syndrome Resource Center

Pediatric Brain Tumor Consortium