 |
|||
|
|||
 |
 |
 |
||||
   |
 |
 |
 |
||
        |
BRAIN TUMOR RESOURCE GUIDEStephen 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. ACOUSTIC NEUROMA ASSOCIATION
Click here to go to the Acoustic Neuroma Association Homepage . Purposes:
Services:
Acoustic Neuroma Association of CanadaPO Box 369 Edmonton, AB T5J 2J6 Canada (403) 428-3384 AMERICAN BRAIN TUMOR ASSOCIATIONformerly 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
BRAINTMR "Brain Tumor Research / Support" on the InternetBRAINTMR@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 SERVICESBox 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:
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
BRAIN TUMOR FOUNDATION OF CANADA111 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!):
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 STATES3333 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 FOUNDATION35 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 INTERNATIONAL6300 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
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 Foundation95 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
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 ASSOCIATIONWHAT 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. ONCOLINKon 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 NETWORK16350 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 ASSOCIATIONP.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 ALLIANCEVHL 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> To the MGH
Neuro-oncology Homepage for more information on on-line
neuroncology resources. |
| 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. | |||
![[Divider]](images/barrule.gif){kind=small} | |||
   |  | Visitors
must read the disclaimer - legal agreement. © All Rights Reserved. Copyright © 20006 MGH Neurosurgical Service | Neurosurgery@MGH IntraNet (internal access only) |
| System
Info Contact: PageServant or
e-mail C.Owen STATS | |||
| Referral@Neurosurgery.MassGeneral.org | |||