Brain Tumors

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
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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: http://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: http://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: http://www.tbts.org/
 

The Brain Tumor Society (BTS) is a national nonprofit that exists to find a cure. BTS funds innovative brain tumor research across the United States and beyond. BTS provides free informational materials and supportive services to brain tumor patients, survivors and their families. Our Color Me Hope Resource Guide, quarterly Heads Up newsletter and numerous fact sheets are available at no charge, and our Support Services team responds to individual inquiries for information, support services, and referrals to other resources. The Brain Tumor Society believes that there is hope, and there will be a cure.

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.
   
• Cerebellar 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).

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
   

Web Sites

• The Children's Brain Tumor Foundation, Inc.
   
• American Brain Tumor Association - Kids

• Pediatric Brain Tumor Foundation
   
• 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

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