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BRAIN TUMOR RESOURCE GUIDE


Stephen B. Tatter, M.D., Ph.D., HTML editor

The guide consists of contact information and a brief listing (when available) of services provided by the following organizations:


To the MGH Neuro-oncology Homepage for more information on on-line neuroncology resources.
To the MGH Neurogenetics Homepage for more information on inherited tumors such as neurofibromatosis, Von Hippel Lindau disease, and tuberous sclerosis.
To the MGH Cranial Base Center Homepage for links to more information on tumors of cranial nerves such as acoustic neuroma.
To the MGH Pituitary Tumor Center for links to more information on pituitary tumors.
To the MGH Meningioma Homepage for information about the treatment of meningiomas at MGH.
To the MGH Spine Center Homepage for more information about spinal tumors and their treatment.
To the MGH AVM and Aneurysm Center Homepage for more information about brain and spinal AVMs and support groups.


ACOUSTIC NEUROMA ASSOCIATION

P.O. Box 12402
Atlanta, GA 30355
(404) 237-8023
FAX (404) 237-2704

Click here to go to the Acoustic Neuroma Association Homepage .

Purposes:
  • To provide information and support to patients who have experienced an acoustic neuroma or other benign problem affecting the cranial nerves.
  • To furnish information on patient rehabilitation to physicians and healthcare personnel.
  • To promote and support research on acoustic neuroma and its affects.
  • To educate the public regarding symptoms suggestive of acoustic neuroma, thus promoting early diagnosis and successful treatment.
Services:
  • Quarterly newsletter with professionally-authored medical information.
  • Patient information dealing with all aspects of acoustic neuroma.
  • National symposium for those affected by acoustic neuroma.

Acoustic Neuroma Association of Canada


PO Box 369
Edmonton, AB T5J 2J6
Canada
(403) 428-3384

AMERICAN BRAIN TUMOR ASSOCIATION


formerly Association for Brain Tumor Research
2720 River Road  Suite 146
Des Plaines, Illinois  60018-4110
(708) 827-9910
FAX: (708) 827-9918
Patient Line: (800) 886-2282
E-mail: info@abta.org 

Click here to go to the American Brain Tumor Association Homepage

The American Brain Tumor Association is a not-for-profit organization dedicated to the elimination of brain tumors through research and patient education services. ABTA is the oldest organization furthering this effort, begun in 1973 by two mothers struggling to understand brain tumors. Since then, ABTA has funded over $2 million in research awards to the most prestigious institutions in the United States.

Services

  • numerous publications
  • newsletter
  • brain tumor specialists directory
  • support group referrals
  • pen pal program
  • etiology (cause) conferences for scientists
  • patient/family information symposia (next one is June 1995; see posting)
  • internet accessible materials (such as what you see here)

BRAINTMR "Brain Tumor Research / Support" on the Internet

BRAINTMR@mitvma.mit.edu (which produced the document you are reading)

To join send a message to: LISTSERV@MITVMA.MIT.EDU that says in the text of the message: SUBSCRIBE BRAINTMR <your name here>

Founder and Facilitator: samajane@mit.edu Samantha J. Scolamiero, bt survivor


BRAIN TUMOR INFORMATION SERVICES


Box 405, Room J341
University of Chicago Hospitals
5841 S. Maryland Ave.
Chicago, IL  60637
(312) 684-1400

Information forthcoming...


BRAIN TUMOR FOUNDATION FOR CHILDREN, INC.


2231 Perimeter Park Drive, Suite 9
Atlanta, GA  30341
Phone:  404-458-5554
FAX: 404-458-5467

The Brain Tumor Foundation For Children is a non-profit virtually all volunteer organization whose purposes are:

  1. To provide emotional and informational support to families of children with brain tumors.
  2. To promote public education and awareness of the disease.
  3. To raise funds to support research for a cure and for improvement in the treatment and the quality of life of the victims of pediatric brain tumor disease.

We primarily support the brain tumor activities at Scottish Rite Children's Medical Center and Egleston Children's Hospital at Emory University School of Medicine's Department of Pediatrics. Families being served by institutions other than Scottish Rite or Egelston are welcome, and urged, to participate in our support and information programs.

ONGOING SUPPORT SERVICES

  1. Parent support and educational group meetings and occasional weekend retreat recreational family events for parents, patients and siblings.
  2. A library of printed and audio taped brain tumor materials maintained at Egelston for use by nursing and social service staff to help educate newly diagnosed patients about the disease and treatment modalities.
  3. Provided funding for an educational coloring book which is used by the nursing staff to help the child and the parents understand the hospitalization and the surgical procedures they may be undergoing.
  4. A bi-monthly newsletter, NEWS VIEWS, an outreach vehicle to provide information for families and a communication link between them, the foundation and the medical community.
  5. A telephone network which permits person-to-person conversation and concern sharing.
  6. A scholarship to encourage graduate nursing students in pediatric oncology.
  7. Financial support of a Transitional Learning Center whose post hospitalized children not yet ready to return to regular school may continue to receive rehabilitative or medical therapies as needed.
  8. WACKY (WILD AND CRAZY KOURAGEOUS YOUTH) a support group for brain tumor patients thirteen and older, our club meets once a month. We always have fun things planned to do i.e. miniature golf, bowling, movies, Six Flags, birthday celebrations, just to name a few. This club provides an opportunity for our children to have a peer group all of their own, just to have fun!!!

BRAIN TUMOR FOUNDATION OF CANADA


111 Waterloo Street Suite 201
London, Ontario N2B 2M4
Canada
(519) 642-7755
FAX (519) 642-7192

The Brain Tumor Patient Resource Handbooks are available (English versions; French version due soon!):

  • Adult Version
  • Pediatric Version

    Pediatric Brain Tumor Patient Resource Book available on OncoLink . (http://oncolink.upenn.edu/disease/ped_brain/)

    Adult Brain Tumor Patient Resource Book available on OncoLink . (http://oncolink.upenn.edu/disease/brain/)


THE BRAIN TUMOR SOCIETY


        The Brain Tumor Society
        84 Seattle Street
        Boston, MA  02134-1245
        Phone: 617/783-0340 or 800/770-8287
        Fax: 617/783-9712

        email: info@tbts.org
        Web: www.tbts.org


CENTRAL BRAIN TUMOR REGISTRY OF THE UNITED STATES


3333 W. 47th St.
Chicago, IL  
(312) 579-0021

Begun by the American Brain Tumor Association as a means to track the incidences of brain tumors in the United States. Data is compiled from state medical records.


THE CHILDREN'S BRAIN TUMOR FOUNDATION


35 Alpine Lane
Chappaqua, NY  10514
Phone:  (914) 238-7658
in NY State (914)-238-1656
FAX:    914-238-6024

The Children's Brain Tumor Foundation, Inc. is a non-profit organization established in 1988 by a group of dedicated parents, physicians, and friends. With a cure rate of less than 30%, brain and spinal cord tumors have the highest fatality rate of all childhood cancers.

We believe increased funding of clinical and laboratory research will result in finding the causes of, and a cure for, such tumors. Since our inception, we have made grants totalling over $700,000.

The Foundation, which is registered with the NYS Department of Charities offers monthly support groups and a resource guide for parents whose children have recently been diagnosed with a brain or spinal cord tumor.


MED HELP INTERNATIONAL


6300 N. Wickham
Suite 130, Box 188
Melbourne, FL  32940
(407) 253-9048
E-mail: staff@mhli.netusa.net 

Med Help International is a not-for-profit bulletin board service on medical topics. The American Brain Tumor Association publications are available in the ABTA section. Med Help International provides free information to anyone who accesses our databases. Med Help International is run in part by the parent of a brain tumor survivor.

Med Help International is accessible through the World Wide Web at http://medhlp.netusa.net/

You can do so by calling (516) 423-0472 and set your modem for N-8-1.


National Cancer Institute (USA)

800-4-cancer - Cancer information hotline

Call and ask for publications and referrals regarding particular tumor types.


NATIONAL BRAIN TUMOR FOUNDATION

785 Market Street, Suite 1600
San Francisco, CA 94103
Phone: 800-934-CURE
415-284-0208
FAX:
415-284-0209
email: SSTF39b@prodigy.com

The National Brain Tumor Foundation (NBTF) is a non-profit organization whose mission is 1) to provide resources, information, and support to people whose lives are affected by brain tumor disease and 2) to fund brain tumor research.

NBTF offers information and resources to brain tumor patients and their families through publications which include: Brain Tumors, A Guide, a 54-page book written to help newly diagnosed patients understand their diagnosis, treatment, and brain tumor specific medical terminology; Support Groups for Brain Tumor Patients & Families in North America, a booklet listing over 120 brain tumor support groups and local resources throughout the United States and Canada; a newsletter, SEARCH, published three times a year to give patients and their families the most up to date information about brain tumors.

NBTF also sponsors: The Support Line, a network of health professionals, brain tumor patients and family members, providing one-on-one support bytelephone; and national and regional conferences created especially for brain tumor patients, their families and health professionals. Patients can access these services by calling the National Brain Tumor Foundation's toll- free patient support line at 1-800-934-CURE (2873).


National Neurofibromatosis Foundation


95 Pine Street - 16th Floor
New York, N.Y. 10005 
fax (212) 747-0004
voice (212) 344-NNFF/6633. 
voice (800) 323-7938 
(National Office hours are Monday through Friday, 9 AM to 5 PM EST) Voice mail messages for the NNFF
may be left by calling either phone after hours.)
e-mail NNFF@aol.com 

The National Neurofibromatosis Foundation , founded in 1978, provides neurofibromatosis patients and their families with information about the disorder and helps them in finding medical, social, and genetic counseling. The Foundation also promotes and supports scientific research on the cause, prevention, and treatment of neurofibromatosis. It acts as an information source for physicians and health workers in the field. The fopundation also funds and manages a number of international collaborative efforts for NF scientists, NF clinics, NF databases, and NF mutation searches.

The Foundation publishes an information booklet for patients and families, a question-and-answer pamphlet, an information booklet about the child with neurofibromatosis type 1 (NF1), an information booklet about the adolescent with NF1, and an information booklet about neurofibromatosis type 2 (NF2), a booklet on NF and learning disabilities, and a booklet for teachers. Serial publications include a newsletter, quarterly; research newsletter, quarterly. The Foundation also has an extensive mailorder bookstore through which most texts on NF are available. Publications are available in English, French (Swiss or Belgian ), Spanish, Portugese, Dutch , Chinese, Vietnamese, Arabic, Greek, Swedish , Italian, and Turkish. Chapters are also available in many areas of the U.S.A.

Click on the highlighted name to go to the National Neurofibromatosis Foundation WWW Homepage.


Neurofibromatosis, Inc.


8855 Annapolis Road Suite 110 
Lanham, , MD 20706-2924 
(301) 577-8984 (Voice) 
(800) 942-6825 (Toll-free) 
(301) 577-0016 (Fax)

Neurofibromatosis, Inc., is a nonprofit organization that provides individuals and families affected by neurofibromatosis and related disorders information on the disease, referrals to physicians and other service providers, and peer counseling. The organization also serves professionals and will respond to mail, telephone, and in-person inquiries. A 24-hour message line is available, and service is extended through the weekend with the help of volunteer staff. Neurofibromatosis, Inc., maintains a database of resources and information on the care of the disease; sponsors seminars and workshops; and provides books, pamphlets, posters, and other related materials. Some publications are available in Spanish. The organization also promotes and supports research in Neurofibromatosis and related conditions.

Publications The organization provides books, pamphlets, posters, and other related materials--some of which are available in Spanish. Serial publication: Neurofibromatosis Ink (newsletter), quarterly.


National Cushing's Association

4620l/2 Van Nuys Boulevard
Sherman Oaks, California 91403
(818) 788-9235 or (818) 788-9239

NATIONAL ORGANIZATION FOR RARE DISORDERS, INC.


P.O. Box 8923
New Fairfield, CT  06812-8923
(203) 746-6518
FAX (203) 746-6481
TDD (203) 746-6927

The National Organization for Rare Disorders (NORD) is a non- profit voluntary health organization dedicated to the identification, treatment and cure of rare disorders and the welfare of people affected by these devastating illnesses. Since its inception in 1983, NORD has served as the primary non- govermental agency for those seeking information on over 5,000 rare diseases. There are a number of brain tumors that are included in NORD's library of materials. Call for more information. Reports are $4 each to cover costs of shipping.

NORD has a networking program for patients and family members. Annual dues for networking are $25.


THE NATIONAL TUBEROUS SCLEROSIS ASSOCIATION

WHAT IS TUBEROUS SCLEROSIS? Tuberous Sclerosis (TS) is a genetic disease occurring approximately once per 5000 live births. This means that every day in the United States, two babies are born with TS. The disease is characterized by abnormal growth in tissue of the skin, brain, heart, kidneys, lungs and eyes. These growths in the brain can result in mental retardation, seizures and may result in behavioral problems such as autism, aggression, uncontrollable rage and hyperactivity. It is not uncommon for the tumors associated with the disease to appear at any age, including adulthood.

For additional information e-mail the National Tuberous Sclerosis Association at NTSA@AOL.com or call Carolyn Wilson at 1-800-225-6872.


ONCOLINK

on the world-wide-web at http://cancer.med.upenn.edu or gopher to: cancer.med.upenn.edu . OncoLink can be accessed through America Online's Internet capabilities as an "Editor's Choice." You won't get the graphical interface on AOL.


PITUITARY TUMOR NETWORK


16350 Ventura Blvd.
Encino, CA  91436
(805) 499-9973
FAX (805) 499-1523

Our mission is to support, pursue, encourage, promote and where possible, fund research on pituitary tumors in a sustained and fulltime effort to find a cure for these illnesses.

PTNA will disseminate information helpful for the medical community, the public, pituitary patients and their families on matters regarding early detection, symtoms, treatments and resources available to patients with pituitary tumors.

We do not believe one must play the cards one is initially dealt. We believe it is possible to discard the bad ones and draw anew.

The PTNA Newsletter Network is now read in over 70 countries. We have the pituitary patient resource guide, a 200+ page information book for patients, families and non-endocrine medical community. With our telephone peer counseling, we hope to give support to patients in need of someone to talk to about their conditions. There is strength in numbers.

Click here to go to the PTNA Homepage .


SOUTH FLORIDA BRAIN TUMOR ASSOCIATION


P.O. Box 770182
Coral Springs, FL  33067-0182
Phone:  305-755-4307
FAX:    same

The South Florida Brain Tumor Association is an organization dedicated to the support of patients and their families. We began in 1990, and have 2 branch locations. The North Branch is located at Boca Raton Community Hospital, Boca Raton, FL. 800 Meadows Rd. Educational Center, classroom "D". This support group meets every 2nd & 4th Thursday of each month. It is facilitated by 3 professionals-PhD, MSW, and an OCN, MSW. This is a large group with it's members truly dedicated to supporting one another-closer than family.

The South Branch began in June 1993, and is growing and becoming a successful group. It is located at Memorial Hospital in Hollywood, FL. The address is 3501 Johnson St., Hollywood, FL. 7th room south conference room. This group meets on the third Thursday of each month & is also professionally facilitated-2 RN, CNRN professionals. The SFBTA has also sponsored 2 national brain tumor conferences. The 1st on Jan. 9, 1993, the second Oct. 29-30, 1994. We also sponsored a 1/2 day seminar at Memorial Hospital in Feb. '93. All were great successes. We are dedicated not only to the emotional support of patients & their families, but also committed to educating them and health professionals.

The SFBTA also has an advisory board which enables us to get patients medical information and direction. The contact people are: Sheryl Shetsky, President-(305) 755-4307 and Tevie Sculnick, Vice- President (305) 748-4153.

We are currently in the process of starting a pediatric support group and combining our efforts with Jackson Memorial Hospital on this project.


Tuberous Sclerosis Canada Sclerose Tubereuse (TSCST)


Jillian DeSilva, President
2443 New Wood Drive
Oakville, ON L6H5Y3
phone: 905- 257 1997 or 1 800-347-0252

email: jillian.dasilva@ablelink.org


VON HIPPEL-LINDAU DISEASE FAMILY ALLIANCE


 VHL Family Alliance
 171 Clinton Road
 Brookline, MA  02146

phone (800) 767-4VHL or (617) 232-5946

fax (617) 734-8233

email: VHL Family Alliance <vhl@PIPELINE.COM>

VHL Family Alliance Homepage


To the MGH Neuro-oncology Homepage for more information on on-line neuroncology resources.
To the MGH Neurogenetics Homepage for more information on inherited tumors such as neurofibromatosis, Von Hippel Lindau disease, and tuberous sclerosis.
To the MGH Cranial Base Center Homepage for links to more information on tumors of cranial nerves such as acoustic neuroma.
To the MGH Pituitary Tumor Center for links to more information on pituitary tumors.
To the MGH Meningioma Homepage for information about the treatment of meningiomas at MGH.
To the MGH Spine Center Homepage for more information about spinal tumors and their treatment.
To the MGH AVM and Aneurysm Center Homepage for more information about brain and spinal AVMs and support groups.

Disclaimer About Medical Information: The information and reference materials contained herein is intended solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient's own physician. All visitors to this and associated sites from the Neurosurgical Service at MGH agree to read and abide by the the complete terms of legal agreement found at the Neurosurgery "disclaimer & legal agreement." See also: the MGH Disclaimer, the MGH Privacy Policy, and the MGH Interactive Program Disclaimer - Copyright 2006.
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