A Journey Into The Brain

Brain Tumor Survivor's Guide to the Internet

Provided by the: American Brain Tumor Association
800-886-2282
info@abta.org
Sharing knowledge, Sharing Hope
RESOURCES

INTRODUCTION

Want to keep up on the latest information about brain tumors? If you have access to a computer and a modem, you can jump on the internet and tap into a wealth of information and support. A list of search engines (listed at the end) will help you find other sites in the Internet as well.

American Brain Tumor Association's Web Site

The American Brain Tumor Association has an extensive web site on the Internet. At that site you can access information about the latest treatments, research, support resources and ABTA events. You can find us at:
American Brain Tumor Association

BRAINTMR: The World's Largest Brain Tumor Support Group

Over 900 people now interact through this e-mail discussion group including patients, family members, neuroscientists, social workers, and representatives of the American Brain Tumor Association. This list was originated by brain tumor survivor, Samantha Scolamiero, and is now maintained by a BRAINTMR volunteer.

The BRAINTMR list is a forum to discuss topics related to all types of brain tumors whether benign or malignant. Information and experiences are shared among brain tumor patients, their families and supporters, all kinds of concerned medical professionals, medical educators, and researchers who study brain tumor growth or treatment. Over 15% of subscribers are medical professionals who learn about a broad variety of patient needs and thoughts.

To subscribe to this list, send e-mail to:
LISTSERV@mitvma.mit.edu
In the body of the message type SUBSCRIBE BRAINTMR followed by your real name. For example, SUBSCRIBE BRAINTMR Jane Q. User. Leave the subject for the e-mail blank or type "none." To unsubscribe from the list, send the command UNSUBSCRIBE BRAINTMR in e-mail to:
LISTSERV@mitvma.mit.edu Send all list related commands to:
LISTSERV@mitvma.mit.edu For assistance, send the command HELP. Send all articles to:
BRAINTMR@mitva.mit.edu

BRAINTMR also hosts a chat room on America Online. To get there from the main AOL menu: go to Pepole Connections, click Find A Chat, click Enter A Private Chat, and type in the full word, braintumor. The screen will tell you how many other people are in the chat room.

ONLINE RESOURCES

Acoustic Neuroma Association (ANA): The ANA has a homepage with information about the organization and the services they provide.
Al Musella's list of Clinical Trials and Noteworthy Treatments for Brain Tumors: This is an extensive listing of brain tumor protocols, a "Virtual Clinical Trial" for those wishing to share their treatment experiences, books can be purchased online. Maintained by Al Musella, DPM.
Brain Tumor Support Group of Maine: This site provides information about the purpose of the support group as well as a meeting schedule and contacts for more information.
CancerNet: An information database of the National Cancer Institute. Various Resources.
CenterWatch-Clinical Trials Listing Service: Patients can use this site to learn about investigational therapies and identify ongoing clinical research trials.
Childhood Brain Tumor Foundation: This homepage provides information about he CHildren's Brain Tumor Foundation and the services they offer.
The Cleveland Clinic Foundation: Provides info about the Cleveland Clinic Foundation's clinical programs, research and physicians as well as a link to the MedHelp Neuro Forum.
Duke University Medical Center: Provides info about services offered by this division, which is dedicated to treating children and young adults with brain and/or spinal cord tumors.
Elekta Instuments, Inc.: Provides info about the Gamma Knife and its manufacturer. Includes a listing of worldwide Gamma Knife locations and an extensive bibliography of articles/books addressing the use of the Gamma Knife.
Food and Drug Administration: Posts FDA news releases, consumer info, the magazine of the FDA online, and offers access to select FDA documents and data.
Friends Network Funletter: The Friends Network publishes a Funletter which is a national activities letter for kids and families with cancer.
Healthfinder: This gov't web site offers consumer info from federal, state, and local agencies as well as non-profit organizations and universities.
Institute for Clinical PET: An international listing of PET ( Positron Emission Tomography ) centers is available at this site.
International Radiosurgery Support Association: Offers info about radiosurgery, what one might experience on the day of treatment, common types of tumors treated and links to related organizations.
Johns Hopkins Stereotactic Radiosurgery: Provides info about the stereotactic readiosurgery program at Johns Hopkins Medical Institutions. Includes indications for use, the treatment process and info about the programs' medical staff.
Massachusetts General Hospital: A special neuro-oncology home page provides info specific to brain tumors.
Medhelp International: Managed in part by the parent of a brain tumor surviver, Medhelp International contains info about brain tumors and treatments and trials. Also offers a neuro forum to ask questions.
Medical Ear Institute, P.L.L.C: Provides info about the Medical Ear Institute and articles on acoustic neuroma surgery and intraoperative facial nerve integrity monitoring.
Medicine Program: Assists patients, who may qualify, to enroll in patient assistance programs. There is a minimal charge for their service. For more info about this program, visit their website.
Medline: The U.S. National library of medicine offers free access to Medline. Contains nearly 9 million citations and abstracts from approx. 4,000 medical journals.
Mental Health Net Self-Help Sourcebook Online: Search this site for info about national and model self-help support groups for different illnesses, disabilities and bereavement situations, self-help clearinghouses, national orgs and resources.
National Association of Charitable Aviators ( Air CXare Alliance ): Offers info about state and local orgs and contacts which offer either low cost or no cost air transportation to treatment.
National Cancer Institute Pediatric Oncology Branch: Provides patients, families, and physicians iwth an overview of the treatment available for children with cancer, and of the research conducted at the Pediatric Oncology Branch of NCI.
National Childhood Cancer Foundation: NCCF supports pediatric cancer treatment and research projects in the U.S., Canada and Australia. Site describes NCCF and offers a listing of CCG clinical cooperative group protocols.
National Health Information Center ( NHIC ): Info about neurofibromatosis and the National Neurofibromatosis Foundation can be obtained on their home page.
NeedyMeds: Provides info about pharmaceutical companies that have special programs to provide medications to those in financial need.
New York University Department of Neurosurgery: Offers descriptions of the NYU neurosurgery clinical divisions, research, residency and fellowship programs, and other info.
Office of Alternative Medicine ( OAM ) at the National Institutes of Health: The OAM facilitates and conducts biomedical research. Their website offers info about various alternative treatments.
Oncolink: An extensive catalogue of cancer-related info, including brain tumor info. ABTA publications and announcements are also included.
PD! ( Physician's Data Query ) Searches: An extensive database of cancer-related clinical trials in the U.S. and overseas. Listings on PDQ is voluntary, but contains over 200 brain tumor clinical trials sponsored by NCI NIH.
Physician Select: The American Medical Association's Web site allows consumers to find info about listed physicians using the AMA physician database.
Pituitary Tumor Network Association: You can access info about the services of the Pituitary Network Association and samples of the material they provide by contacting this site.
Southwest Oncology Group ( SWOG ): The SWOG has a web page which lists details about their clinical trials.
Tap Holdings, Inc. Oncology Clinical Studies Web Site: Info about brain tumors, an explanation of the process of angiogenesis, and info about TAP Holdings clinical trial testing their angiogenesis-inhibitor.
University of Minnesota Hospital Department of Neurosurgery: Offers a description of the clinical trials available at the University of Minnesota and directions for obtaining additional info.
University of Southern California Department of Neurosurgery ( ANGEL ): Provides answers to WWW users about brain tumors.
Von Hippel-Lindau Disease: Info about this disease is available from the Family Alliance Homepage.
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