Resource Organizations

Information about pediatric brain and spinal cord tumors in medical texts or bookstores may be outdated. We have listed sources of help that will have current information. Call or write and….ask!

North American Brain Tumor Coalition
The North American Brain Tumor Coalition is a network of seven brain tumor organizations throughout the U.S. and Canada, dedicated to eliminating brain tumors. The Coalition aims to raise public awareness about the impact of brain tumors and advocates for increased research funding, access to specialized care, and other issues affecting brain tumor patients. NABTC is an active voice, representing the interests and concerns of both children and adults with brain tumors.

Member organizations offer research, education and support services for brain tumor patients, their families and friends. The following organizations are members of the NABTC:

American Brain Tumor Association
2720 River Road (847) 827-9910
Des Plaines, Illinois 60018 FAX (847) 827-9918
Patient Line (800) 886-2282
E-mail: info@abta.org
Website: www.abta.org

ABTA provides free written materials about brain tumors and treatment options. The organization’s newsletter, The Message Line, describes advances and announces updates of publications and a pen pal program, “Connections,” brings brain tumor patients together. ABTA hosts annual meetings on brain tumor research for patients and families.

The Brain Tumor Society
124 Watertown Street, Suite 3H (617) 924-9997
Watertown, Massachusetts 02472 FAX (617) 924-9998
Patient Line (800) 770-8287
E-mail: info@tbts.org
Website: www.tbts.org

TBTS exists to find a cure for brain tumors. It raises and allocates funds for basic scientific research, and serves patients and families by sponsoring conferences and symposia. It also provides telephone information and access to support. Its also publishes a resource guide, Color Me Hope, and a newsletter, Heads Up.

National Brain Tumor Foundation
414 13th Street, Suite 700 (415) 284-0208
Oakland, California 94162-2603 FAX (415) 284-0209
Patient Line (800) 934-CURE
E-mail: nbtf@braintumor.org
Website: www.braintumor.org

NBTF raises funds for research and provides information and support services to brain tumor survivors and their families. The following publications are available:

Brain Tumors: A Guide Understanding and Coping with Your Child’s Brain Tumor
A Spanish language brochure with basic information about diagnosis and treatment
Fact sheets on gene therapy, clinical trials, chemotherapy and choosing a treatment center
An annual listing of brain tumor support groups nationwide
SEARCH, a quarterly newsletter, and the Support Group Facilitator newsletter

Pediatric Brain Tumor Foundation of the United States
315 Ridgefield Court (828) 665-6891
Asheville, North Carolina 28806 FAX (828) 665-6894
RFK info. (800) 253-6530
E-mail: ride4kd@ibm.net
Website: www.ride4kids.org

The PBTFUS supports basic medical research to find the cause and cure of brain tumors in children Educational grants are offered to support national and international symposia. PBTFUS raises funds and public awareness through the motorcycling community through the “Ride for Kids.” PBTFUS publishes the newsletter, The Helping Hand, and encourages family interaction through “Family Life Line.”

The Preuss Foundation
2223 Avenida de la Playa – Suite 220 (858) 454-0200
La Jolla, California 92037 FAX (858) 454-4449
E-mail: preussfd@cerfnet.com

The Preuss Foundation funds basic and clinical research to pre-selected researchers and institutions, and fosters communication among researchers. It conducts several invitation-only seminars each year on topics in brain tumor research and treatment. It contributes to national and international meetings on brain tumor research, and has been instrumental in funding research laboratories at Duke University Medical Center and the University of California at San Francisco.

Acoustic Neuroma Association (ANA) of Canada
P.O. Box 369 (780) 428-3384
Edmonton, Alberta T5J2J6 FAX (780) 425-8619
(Please mark to attention of ANAC) Patient Line (800) 561-2622
E-mail: anac@compusmart.ab.ca

ANA of Canada provides information and support for patients with this disorder and other benign tumors affecting the cranial nerves. It publishes materials on physical and neuromuscular rehabilitation and the alleviation of post surgical problems, in addition to a newsletter, The Connection.

Brain Tumor Foundation of Canada
650 Waterloo Street, Suite 100 (519) 642-7755
London, Ontario N2B 2M4 (800) 265-5106
Canada FAX (519) 642-7192
Website: www.btfc.org

This group supports research and fellowships on the cause and cure of brain tumors. It offers support group meetings in nine cities and a national telephone support system. Published materials include comprehensive patient resource handbooks in adult and pediatric versions, both in French and English, and a newsletter, Brain Storm. Tapes and videos on brain tumors are also available to patients and families.

Other Resource Organizations

Acoustic Neuroma Association
P.O. Box 12402 (404) 237-8023
Atlanta, Georgia 30355 FAX (404) 237-2704
E-mail: anausa@aol.com
Website: anausa.org

The Acoustic Neuroma Association is a patient organized and administered information and mutual-aid group. It provides information and support to patients with acoustic neuromas, furnishes information on patient rehabilitation to physicians and health care personnel, promotes and supports research on acoustic neuromas, publishes materials about symptoms and a newsletter.

American Cancer Society (National Headquarters)
1599 Clifton Road, NE (800) ACS-2345
Atlanta, Georgia 30329
Website: www.cancer.org

The American Cancer Society provides general information on treatment and may provide financial support. A range of support services is available. The 800 number will automatically connect you with the chapter closest to you.

Brain Tumor Foundation for Children, Inc.
1835 Savoy Drive, Suite 316 (770) 458-5554
Atlanta, Georgia 30341 FAX (770) 485-5467
E-mail: btfc@bellsouth.net
Website: www.btfcgainc.org

This organization plans educational offerings four times yearly and a December holiday party. When a child is diagnosed in the Atlanta, the family is offered direct personal support. A newsletter from the organization is available.

Cancer Care
275 Seventh Avenue, 22nd Floor (212) 302-2400
New York, New York 10001 National Counseling Line (800) 813-HOPE
Website: www.cancercare.org

Cancer Care offers free professional one-to-one counseling, specialized support groups, educational programs and telephone contact and a national resource guide. Some financial assistance is available. Offices are located in New York, New Jersey, and Connecticut.

Cancer Cured Kids
P.O. Box 189 (516) 484-8160
Old Westbury, New York 11568 (800) 995-KIDS

This agency offers print and video materials for teachers and educators to strengthen the educational support system for children surviving with cancer and their schoolmates.

Cancer Information Service
National Cancer Institute (800) 4-CANCER
National Institutes of Health
Building 31, Room 10A16
900 Rockville Pike
Bethesda, Maryland 20892
Website: cis.nci.nih.gov/

National Cancer Institute
31 Center Drive
MSC 2580
Bethesda, Maryland 20892-2580
Website: www.nci.nih.gov

The National Cancer Institute’s toll-free 24-hour Cancer Information Service has trained staff members to answer your questions and listen to your concerns, and supply information (in English and Spanish). Most CIS offices are associated with Comprehensive Cancer Centers. CIS offices do not diagnose cancer or recommend treatment. They provide support, understanding and rapid access to the latest information on cancer. The National Cancer Institute’s PDQ (Physician Data Query) is a computerized data base that gives the latest treatments and NCI sponsored clinical trials in the United States and Canada. Patients may call 1-800-4 CANCER to access a PDQ search and obtain publications.

The Candlelighters Childhood Cancer Foundation
7910 Woodmont Avenue (301) 657-8401
Suite 460 (800) 366-2223
Bethesda, Maryland 20814-3015 FAX (301) 718-2686
E-mail: info@candlelighters.org
Website: www.candlelighters.org

The Candlelighters provides information to parents of childhood cancer patients. They publish newsletters for parents and survivors, distribute information and publish handbooks on childhood cancer. Local chapters may offer support groups and financial assistance.

Chai Lifeline/Camp Simcha
National Office (212) 465-1300
151 West 30th Street (877) SIMCHA-4
New York, New York 10001 FAX (212) 465-0949
E-mail: info@chailifeline.org
Website: www.chailifeline.org

This national non-profit organization provides free support and assistance to Jewish individuals of all ages who suffer from cancer and other life threatening illnesses and their families. It sponsors kosher camp for children with cancer. Free telephone support groups for parents. Offices are located in Florida, Michigan and Illinois.

The Childhood Brain Tumor Foundation
20312 Watkins Meadow Drive (301) 515-2900
Germantown, Maryland 20876
E-mail: cbtf@monumental.com
Website: www.mnsinc.com/cbtf

This group raises funds for scientific research, provides support and education to families, and advocates for patients and families through their Ombudsman Program. They publish a newsletter, provide a web-site with clinical updates in the mid-Atlantic area, and host a semi-annual family retreat day with educational seminars.

Children’s Hospice International
2202 Mt. Vernon Avenue (703) 684-0330
Suite 3C (800) 24-CHILD
Alexandria, Virginia 22301
E-mail: chiorg@aol.com
Website: www.chionline.org

This organization offers information and referral for child care, promotes hospice support through pediatric care facilities, serves as an information clearinghouse, sponsors seminars and lectures for professionals, issues publications and a newsletter.

Compassionate Friends, Inc.
PO Box 3696 (630) 990-0010
Oak Brook, Illinois 60522-3696
E-mail: TCF_national@prodigy.com
Website: www.compassionatefriends.org

This self-help organization which offers friendship and understanding to bereaved parents, publishes a newsletter and other materials on parent and sibling bereavement. Local chapters hold free, open support meetings.

Federation for Children with Special Needs
1135 Tremont Street, Suite 420 (617) 482-2915
Boston, Massachusetts 02120
E-mail: fcsninfo@fcsn.org
Website: www.FCSN.org

A center for parents and parent organizations working to serve children and families.
It undertakes the following projects:

Education for Independence (parent training and information, due process specialist training, information clearinghouse, resource library, newsletter, speakers bureau, and student internships)
Technical Assistance for Parents Programs (TAPP), co-ordinates national network of parent centers
Collaboration Among Parents and Health Professionals – develops training and information resources to promote professional/parent partnerships, parent access to information, peer support.

Hydrocephalus Association
870 Market Street (415) 732-7040
Suite 705 FAX (415) 732-7044
San Francisco, California 94102

E-mail: hydroassoc@aol.com
Website: http://www.HydroAssoc.org

This nonprofit group provides information packets about hydrocephalus in infants, children and adults, and About Hydrocephalus – A Book for Parents (in English and Spanish). They also publish a newsletter and a directory of pediatric neurosurgeons.

National Cancer Institute
Pediatric Oncology Branch
10 Center Drive (301) 496-4256
MSC 1928
Building 10, Room 13N240
Bethesda, Maryland 20892
Website: www-dcs.nci.nih.gov/pedonc/index.html

NCI’s children’s clinic, the Children’s Inn, treats over 500 children with cancer a year. The clinic has an active parents group, a temporary residence and prepares publications for the parents. Medical treatments, hospitalizations, travel, and accommodations are provided free of charge.

National Children’s Cancer Society
1015 Locust Street, Suite 600 (314) 241-1600
St. Louis, Missouri 63101 (800) 532-6459
Fax (314)241-6949
E-mail: pfs@children-cancer.com
Website: www.children-cancer.com

This group provides financial assistance for pediatric cancer treatment, medical supplies, home health care and emergency costs such as transportation, lodging and food, and child care. The NCCS’s objective is to negotiate reasonable financial solutions, as well as structure financial arrangements that will facilitate the ultimate goal to ensure that no child’s life be at risk due to a lack of funds for medical care. This organization is also active in bone marrow recruitment and education programs.

National Childhood Cancer Foundation
440 E. Huntington Drive, Suite 300 (800) 458-6223
P.O. Box 60012 (626) 447-1674
Arcadia, California 91066-6012 FAX (626) 447-6359
E-mail: nccf-info@nccf.org
Website: www.nccf.org

NCCF is funds research and clinical trials of the Children’s Cancer Group, a cooperative group of the NCI. NCCF staff offer clinical trial information, referrals to CCG treatment centers and public education.

National Familial Brain Tumor Registry
The John Hopkins Oncology Center (410) 955-0227
600 North Wolfe Street – Room 132 FAX (410) 955-0125
Baltimore, Maryland 21287-8936

The Registry is collecting information from families where two or more members have a primary malignant brain tumor and from families where the husband and wife both develop primary malignant brain tumors. Their intention is to gain insight into possible genetic and environmental causes of brain tumors.

NICHCY
National Information Center for Children and Youth with Disabilities
P. O. Box 1492 (800) 695-0285
Washington, DC 20013-1492 (202) 884-8200
FAX (202) 884-8441
E-mail: nichcy@aed.org
Website: www.nichcy.org

NICHCY is an information and referral center for children with disabilities and their families. They offer pamphlets and information free of charge.

National Parent To Parent Support & Information System
P.O. Box 907 (706) 374-3822
Blue Ridge, Georgia 30513 (800) 651-1151
FAX (706) 374-3826
E-mail: nppsis@ellijay.com
Website: www.nppsis.org

This federally supported, nonprofit organization maintains a national database of parents so that any family who calls can be linked to another family with similar healthcare needs or circumstances. Services are free and confidential.

SKIP of New York, Inc.

New York Area Office
545 Madison Avenue, 13th Fl. (212) 421-9160
New York, New York 10022 FAX (212) 579-5736

Rochester Area
620 West Fall Road, Ste.238, Rm. 16 (716) 241-5831
Rochester, New York 14620 FAX (716) 241-5875

Buffalo Area
5862 Transit Road (716) 681-1307
Depew, New York 14043 FAX (716) 681-5590

SKIP (Sick Kids need Involved People) provides medically fragile children and their families with peer and educational support, information and referrals, and advocacy services free of charge.

The Children’s Cause, Inc.

1010 Wayne Avenue, Suite 770 (301) 562-2765
Silver Spring, MD 20910 Fax: (301) 565-9670
Web Site: www.childrenscause.org

The Children’s Cause was founded in 1999 by Susan L. Weiner, Ph.D., to provide education and advocacy on national policies that affect research, health care, and services for children with cancer, long term survivors, and their families. With advice from medical, scientific and policy experts, The Children’s Cause works to ensure the rapid and safe development of new treatments, quality health care for children, and appropriate follow-up care for survivors of childhood cancer.