########## B R A I N T M R * N E W S ########### February 9, 1995 =========================================================================== CONTENTS: ~~~~~~~~~ *NOTE *HELP WANTED *REPORTS AND ABSTRACTS FOR THE PRECEDING MONTH -- Subscriber Activity (statistics) -- Tumor Types Mentioned -- Treatment Types Mentioned -- Hot Topics (version 1 and version 2) -- Research Mentioned -- Announcements (includes conatact names/addresses) -- Articles -- Searches/Queries (includes contact names/addresses) *RESOURCES (newly mentioned and long standing) NEW AND IMPROVED!!! *ADMINISTRIVIA - Reminders & Helpful hints for managing your subscription *DISCLAIMER ============================================================================ NOTE: ~~~~~ HI! This is the fifth edition of BRAINTMR NEWS. (Earlier Editions will be available (soon?) on the World Wide Web from the BRAINTMR HOME PAGE) This edition would not be possbile without major help from Henri Neethling & Sandy Barnes and the others who work behind the screens on BRAINTMR: Jeff Bender, KarenS,JohnL, and Bill Giles. Special thanks to Katherine at the American Brain Tumor Association for putting together a more elaborate RESOURCES section! The NEWS is usually sent out on the first of every month (forces of the universe willing :) (This month they were not...) The object is to summarize the BRAINTMR list activity for the preceeding month, to list Brain Tumor Resources and additions to the BRAINTMR FAQ (which i have been saying is under construction, but we barely have a blue print, that problem looks like it will get addressed in APRIL!!! ), and to provide some standard administrative information. The NEWS will be helpful for new subscribers and is a supplemental service for long-term members. Plus, I am maintaining a separate mail list in my account for distributing BRAINTMR NEWS only. Still working the kinks out... (Most of the people who leave the list do so because of the high volume but would like to stay aware of BRAINTMR activity, so the NEWS will be a way for them to stay connected. If they see something interesting they can retrieve the archived logs of the list.) This is a long file. It is packed with good information though. There are helpful hints in the ADMINISTRIVIA section at the end to help you manage your subscriber options. Cheers! -samantha =============================================================================== HELP WANTED: ~~~~~~~~~~~ As always: I NEED YOUR HELP ON FORMAT/CONTENT IDEAS for the NEWS!!!!!!!!!!! What needs to be changed? added? removed? If you have comments or suggestions please send them along or if you would like to help with the NEWS, the FAQ or any other BRAINTMR project, just let me know via: samajane@mit.edu! =============================================================================== ******************************************************************************* REPORTS AND ABSTRACTS FOR JANUARY 1995 ******************************************************************************* SUBSCRIBER ACTIVITY: Figures for Net Change are actual. ~~~~~~~~~~~~~~~~~~~ Other figures may be closely approximated depending on actual data available that month. -s. FOR JANUARY 1995: ----------------- 092 new subscriptions 050 subscriptions cancelled net change = +42 total number of active subscriptons= 355 (an increase of 13% for Jan.) FOR DECEMBER 1994: ----------------- 046 new subscriptions * 033 subscriptions cancelled * net change = +13 total number of active subscriptons= 313 (an increase of 2% for Dec.) *NOTE: these figures for December are lower than what they acutally were due to some lost files (perhaps +10 or more for each catagory). ((EARLIER DATA AVAILABLE ON EARLIER NEWSLETTERS)) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ TUMOR TYPES and CONDITIONS MENTIONED ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Note: This section has been updated to include e-mail addresses of people who posted *during this month* indicating they are interested in or have experience with that tumor type. (Thanks Sandy!) astrocytoma jimekurtz@aol.com finley@mindspring.com shaoa@HPCC291.PA.ITC.HP.COM rahamim@pond.stanford.edu FredCoffey@aol.com RBrown2256@aol.com doctor4@ix.netcom.com cgentili@LEO.VSLA.EDUz signal@ssnet.com puhlir@symantec.com ValenticF@aol.com meningioma lgrader@ctext.com RYSZYTIWSKYJ@CORNING.COM HAL2K@aol.com glioblastoma multiforme (no capitals!) Declaration: in accordance with BRAINTMR LAW, capitalization of gbm will not be tolerated. :) We have no respect for this nasty tumor which has no respect for us. Thanks Linda for setting us straight ;-) kaminskd@netcom.com kbiker@netcom.com uskgfxgf@IBMMAIL.CO StanSil@AOL.COM s.brown@qut.edu.au dagar@CARBON.CUDENVER.EDU MMBELL01@ULKYVM.LOUISVILLE.EDU sabawi@ibm.net CLayne1@aol.com Musella@aol.com egran@DUNCAN.ISLAND.NE jdye@TSS.COMT lars@NTSG.UMT.EDU mls@lamg.com escherbak@attmail.com lee.kalinsky@hofbbs.com JaneWil@aol.com schnidma@acc.fau.edu robinson@sector.kodak.com beaulieu@usmvs.enet.dec.com LIBINST@OREGON.UOREGON.EDU RTurley@aol.com h.belina@utoronto.ca bakerval@PWFL.COM subependymoma- JohnL4598@aol.com malignant teratoma- JoyHar@aol.com craniopharyngioma- jmjanich@UMICH.EDU Karla50@aol.com mixed glioma- VrbaD@aol.com non-germinoma germ cell tumor kharlow@RWBECK.COM oligodendroglioma- mgehres@datasync.mv.com ahospodo@qntm.com wagne001@MAROON.TC.UMN.EDU 73623.2614@COMPUSERVE.COM dalet@halcyon.com PAPE@rfmh.org j_d_f@IX.NETCOM.COM PAPE@IRIS.RFMH.ORG tmyers@SPL.LIB.WA.US slatchford@aol.com Scott25@aol.com jdye@tss.com KELLYM@CTRVAX.VANDERBILT.EDU tuberous sclerosis- CFOLIO@TEMPLEVM.BITNET Atypical Teratoid- PIZZIL@LEAV-EMH.ARMY.MIL pineoblastoma- TPREADY@AAMC.ORG von Hippel-Lindau disease- r_wolyniec@vssi.trw.com medullblastoma- corey220@PANIX.COM Bethel@ix.netcom.com brain stem glioma- Matt474009@aol.com DABAERS@aol.com ependymoma- VrbaD@aol.com philg@WORLD.STD.COM cns lymphoma- Rasmind@aol.com ~~~~~~~~~~~~~~~~~~~~~~~~~~ TREATMENT TYPES MENTIONED: (by Henri) ~~~~~~~~~~~~~~~~~~~~~~~~~~ Meningioma - Dr A Fried (ahf@aol.com) Proton Beams - H Neethling (hn2@iaccess.za) - Dr Loren Buhle (buhle@xrt.upenn.edu) Chemo combination - PCV (Procarbazine, Vincristine, CCNU) - Ara-c and Cisplatin - Taxol (Dr John R. Mangiardi High dose Tamoxifen - 100mg / day Intramedullary ependymomas - microsurgical approach and using laser and ultrasonic aspirator. (Dr A Fried ahf@aol.com) Antineoplastons (Soduim Phenylacetate) Coenzyme Q 10 (Co-Q-10) - OncoLink, Advanced search Q10 ~~~~~~~~~~~ HOT TOPICS ~~~~~~~~~~~ Version 1 (by Henri) Anti-Angiogenisis & LM609 Mab Proton Beams Metastatic Brain Tumors Steroid-induced psychosis Children with Brain Tumors Antineoplastrons Anticonvulsants (Dilantin, Felbatol_ Phenobarb causes arthralgia Epidemiology, Brain tumors in children - Robert U Mulder (rum@Virginia.EDU) Memory Loss Recipe - Hal Preller (HAL2K@AOL.COM) GBM and Chemo, Why? - Al Sabawi - David Korones Parents with Brain tumors Silicone shunts - allergic reaction Brain Tumors vs. Brain cancer & Benign Brain tumor EMF's and Brain tumors Brain swelling - Dr J R Mangiardi (JohnMANG@AOL.COM) Teratoma/Germ Cell Tumor & AFP - John R. Mangiardi, MD Malpractice Sleep disorder - marva@ovid.healthspan.edu (marva bohen) Neurofibromatosis (NF) - Bartlett D Moore (Bartmoore@AOL.COM) Xenon / MRIs - tumor imaging Gene therapy - Joyce Turley HOT TOPICS Version 2 (by Sandy) Women on Taxomifen Proton beams Loved ones asking assistance for aggressive BTs Recovery times Strategies during treatment brain injury liposomes pseudorheumatism ABTA on line High dosage Taxomifen Dilantin Visual problems National Brain Tumor Foundation (procarbazine/lomustine/vincristine chemotherapy Chemo effective against GBM4? Support for children of BT patients Brain tumor/cancer language AFP levels Flax seed derivatives for GBM Can you trust your neurosurgeon? cranialpharyngioma doctors keeping up with new information neurofibromatosis Mikey/medullablastoma/Rasmind@aol.com Would we know if there were a cure for bt? Sleep problems BEYOND BRAINTMR weekend plans "Love Medicine and Miracles" Good news and passings Applying for SSI benefits Botulism toxin injections Clinical trials for software BT humor! ~~~~~~~~ RESEARCH (by Henri) ~~~~~~~~ LM609 Mab (monoclonal antibody) ~~~~~~~~~~~~~ ANNOUNCEMENTS: (by Henri) ~~~~~~~~~~~~~ Von Hippel-Lindau Family Alliance. - vhl@PIPELINE.COM Corporate Angel Network, Inc - free air transport for cancer patients - (914)-328-1313 Traumatic Brain Injury List - tbi-sprt@sjuvm.edu the owner is Len Burns lburns@cats.ucsc.edu American Brain Tumor Association - On Line - ABTA@aol.com National Brain Tumor Foundation. - Conference 11 March, Med Help BBS & ABTA (516) 423-0472 (N81 ANSI) - Phil Garfinkel (philg@world.std.com) ADVOCACY on listserv@sjuvm.stjohns.edu - For people with disabilities ABTA's Brain Tumor Symposium that is coming up June 9 -11 - abta@aol.com ROADMAP WORKSHOP #4! - Patrick Douglas Crispen "BEYOND BRAINTMR": a retreat 8, 9 April 1995 - Samantha J. Scolamiero" Nuclear Antigen Symposium as Targets for Cancer Therapy - June 2-3 conference, in Omaha, Nebraska Hawaii Support Group Meeting - "Chuck Rogers, Jr." <73623.2614@COMPUSERVE.COM> ~~~~~~~~ ARTICLES: (by Henri) ~~~~~~~~ Nahum AE, Dearnaley DP, Steel GG. Prospects for Proton beam Radiotherapy. European Journal of Cancer. 30(10):1577-1583;1994. Edward G. Shaw, et al "Oligodendrogliomas: the Mayo clinic experience." Journal of Neurosurgery 76: 428-434 (March 1992). resultsfrom 81 patients treated 1960-1982. Bullard, Dennis(?) et al "Oligo(etc): An analysis of the Value of radiation therapy" Cancer 60: 2179-2188, Nov 1, 1987. Wallner, Kent, et al "Treatment of oligo... with or without postoperative irradiation" Journal of Neurosurg 68: 684-688, may 1988. Jon Glass, et al "The treatment of oligodendrogliomas and mixed oligo-astrocytomas with PCV chemotherapy. Same journal 76: 741-745, May 1992 "The Treatment of Anaplastic Oligodendrogliomas and Mixed Gliomas" by Athanassios P. Kyritsis, W.K. Alfred Yung, Janet Bruner, Mary Jo Gleason, and Victor Levin, published in Neurosurgery, March, 1993. "Neuropsychological Aspects of Cancer and Cancer Treatments" which appeared in PHYSICAL MEDICINE AND REHABILITATION: State of the Art Reviews (1994) Facial Paralysis - "A Loss Of Face - Facial Paralysis, A Guide To Self Help" by D.J.Farragher MSc. Grad Dip Phys. Dip TP FCSP ~~~~~~~~~~~~~~~~~ SEARCHES/QUERIES: Format= Question?: REPLY TO ~~~~~~~~~~~~~~~~~ this space intentionally left blank (um, yeah :) -S. =============================================================================== ~~~~~~~~~~~ RESOURCES (New and Improved by the American Brain Tumor Association!!!) ~~~~~~~~~~~ ACOUSTIC NEUROMA ASSOCIATION P.O. Box 12402 Atlanta, GA 30355 (404) 237-8023 FAX (404) 237-2704 Purposes: 1. To provide information and support to patients who have experienced an acoustic neuroma or other benign problem affecting the cranial nerves. 2. To furnish information on patient rehabilitation to physicians and health care personnel. 3. To promote and support research on acoustic neuroma and its affects. 4. 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. ---------------------------------------- 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: abta@aol.com 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. The following publications are available through ABTA free-of- charge to patients and their loved ones. The Primer of Brain Tumors and the Dictionary for Brain Tumor Patients are available online via OncoLink and MedHelp International. * A Brain Tumor - Sharing Hope * A Primer of Brain Tumors (fifth edition) * Dictionary for Brain Tumor Patients * About Ependymoma * About Glioblastoma Multiforme and Anaplastic Astrocytoma * About Medulloblastoma/PNET * About Meningioma * About Metastatic Tumors to the Brain & Spine * About Oligodendroglioma and Mixed Glioma * About Pituitary Tumors * Alex's Journey: The story of a child with a brain tumor (for children 9-13) * When your Child is Ready to Return to School * Message Line, newsletter tri-annually * Chemotherapy of Brain Tumors * Immunotherapy of Brain Tumors * Radiation Therapy of Brain Tumors - Part I: A Basic Guide - Part II: Background and Research Guide * Shunts * Coping with a Brain Tumor - Part I: From diagnosis to treatment - Part II: During and after treatment * Using a Medical Library * Organizing a Support Group ("how-to" pamphlet) * Current Support Group Listing (by state, please request which state) * Connections: A pen-pal program * Physician Resource Lists - Physicians who offer investigational treatments for brain tumors in ADULTS - Physicians who offer investigational treatments for brain tumors in CHILDREN ------------------------------------- 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 600 London, Ontario N2B 2M4 Canada Phone: 519-642-7755 Fax: 519-642-7192 The mission of the Brain Tumor Foundation of Canada is to fund brain tumor research, provide patient and family support services and educate the public. Literature available through the Foundation include: * Brain Tumor Patient Resource Handbook-Adult Version * Brain Tumor Patient Resource Handbook-Pediatric Version * Brain Tumors Strike At Any Age-Awareness Pamphlet * Brainstorm Newsletter-Quarterly * Guidelines for Brain Tumor Support Groups Now being researched for publication: * Regional supplements for major neurological centers across Canada * Brain Tumor Foundation of Canada "WE CARE" pamphlet of services * French Translation of all publications * Monthly Support Groups for Adults with Brain Tumors are now available in London, Windsor, Kitchener, Sarnia, Ottawa, Chatham and Mississauga. A Pediatric Support Group, for children and their families, in London and the surrounding area is also available. This group meets quarterly. Plans are underway to establish additional support groups (adult & pediatric). Information available on OncoLink. (http://cancer.med.penn.edu/1/buhle/brain/btfc) ----------------------------- THE BRAIN TUMOR SOCIETY 60 Leo Birmingham Parkway Boston, MA 02135-1116 (617) 783-0340 FAX (617) 783-9217 Funds research and provides patient education materials. Call for more information... more information forthcoming -------------------------------- 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. More information forthcoming.... ----------------------------- THE CHILDREN'S BRAIN TUMOR FOUNDATION 35 Alpine Lane Chappaqua, NY 10514 Phone: 914-238-7658 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. ---------------------------------- FOUNDATION FOR NEUROSURGICAL RESEARCH 988 Fifth Avenue New York, NY 10021 (212) 734-5071 E-mail: JohnMANG@aol.com Independent research laboratories investigating brain tumor treatments.Begun by Dr. J.R. Mangiardi. More information forthcoming.... ----------------------------------- HYDROCEPHALUS ASSOCIATION 870 Market Street, Suite 955 San Francisco, CA 94102 Phone: 415-776-4713 The Hydrocephalus Association was founded in 1983, incorporated as a nonprofit in 1986, is governed by a Board of Directors and employs, an Executive Director, Assistant Director, Director of Development and a Program Director part time. Medical Professionals serve in an advisory capacity. The Hydrocephalus Association is funded through a combination of individual contributions, membership dues, grants from private business and foundations and an annual fund drive. RESOURCES OutReach Program trains families to provide one-to-one personal support. Regional educational meetings in the greater San Francisco Bay Area including Palo Alto, Fremont, Rohnert Park, Fresno, and San Francisco. Social gatherings provide families an opportunity to share information and experiences. Networking with other support groups and organizations nationwide. Two day bi-annual National Conferences on Hydrocephalus for Families and Professionals featuring the nation's top neurosurgical specialists. About Hydrocephalus - A book for Parents A 36 page booklet detailing all the aspects of hydrocephalus from diagnosis and treatment to complications and follow-up care. 25,000 copies have been distributed in six years. A Spanish edition will be available Summer, 1994. The Resource Guide A comprehensive listing of 250 articles on all aspects of hydrocephalus. Articles may be ordered from the Association for a small fee. The Directory of Pediatric Neurosurgeons Published in 1991, updated in 1994, the Directory is the first resource of its kind available to the general public. 162 neurosurgeons are listed with addresses, both alphabetically and geographically. Quarterly Newsletter A 12 page newsletter is published quarterly. Fact and Information Sheets The Series of ten topics include Adult Onset Hydrocephalus, Primary Care of the Child with Hydrocephalus, Learning Disabilities in Children with Hydrocephalus & Social Skills Development. Link Program A nationwide network of individuals listed in Directory format giving our members direct access to others in similar circumstances. Directory of Hydrocephalus Support Groups Published in 1994, the Directory lists information on sixteen Hydrocephalus groups nationwide. All resources are free to families. ------------------------------------- MED HELP INTERNATIONAL 6300 N. Wickham Suite 130, Box 188 Melbourne, FL 32940 (407) 253-9048 E-mail: philg@world.std.com 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. You can do so by calling (516) 423-0472 and set your modem for N-8-1. --------------------------------------- NATIONAL BRAIN TUMOR FOUNDATION 785 Market Street, Suite 1600 San Francisco, CA 94103 Phone: 800-934-CURE 415-284-0208 FAX: 415-284-0209 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 by telephone; 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 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. -------------------------------- 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 Information specific to pituitary tumors and the special circumstances surrounding these tumors. More information forthcoming.... ---------------------------------- RAINBOW FOUNDATION FOR BRAIN TUMOR RESEARCH P.O. Box 327 Highland Milles, NY 10930 (914) 928-8683 Information forthcoming.... ------------------------ 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 or Tevie Sculnick Vice- President (305) 748-4153 Fax# 305-755-4307. We are currently in the process of starting a pediatric support group and combining our efforts with Jackson Memorial Hospital on this project. --------------------------- CancerNet and PDQ available via gopher: gopher.nih.gov --------------------------- Dr. Alain Thibeault of the Brain Tumor Clinic of the Clinical Pharmacology branch of the National Cancer Institute: (301) 402- 1997 --------------------------- Janis L. Esenwein at UT M.D. Anderson Cancer Center: esen@utmdacc.mda.uth.tmc.edu ---------------------------- Dr. Richard Bergland, Director of Neurosurgery at Beth Israel Hospital in New York, NY treating first BNCT recipient for glioblastoma in US. Phone: (212) 717-5313 or (212) 420-2768 ---------------------------- Al Musella maintains a list of glioblastoma protocols on OncoLink. Al can be reached at musella@aol.com ---------------------------- QUICK INFORMATION ABOUT CANCER FOR PATIENTS AND FAMILIES URL: gopher://una.hh.lib.umich.edu/00/inetdirsstacks/cancer%3agourhin ---------------------------- FAQ ON CANCER AND EMF The primary anonymous FTP archive is: cdmas.crc.mcw.edu/pub/powerlines_and_cancer ============================================================================== ~~~~~~~~~~~~~~ ADMINISTRIVIA: Reminders and helpful hints. ~~~~~~~~~~~~~~ Note: NEW means that this is the first time this information has appeared in the News, it does not mean it is a new option or guideline. NEW* Try to send short messages directed to individuals directly to that person. (You need to compose a new message) Their email address should appear in the header of the message and at the end (see below :) NEW* We decided awhile ago to use the following tags in the subject line to help people sort messages. INTRO: (to introduce yourself) HELP: (to ask a question) RESEARCH: and SUPPORT. I forget to use them too. There were some others I think... Let's try again. :) **** Please put your e-mail address at the end of EVERY post. **** Please refrain from using impolite language on the list. **** Don't feel shy about sending an introduction about yourself or your brain tumor experience to the list: BRAINTMR@mitvma.mit.edu **** Please do not send administrative commands to the list. Send the commands listed below in the text of your message to the listserver. To: LISTSERV@MITVMA.MIT.EDU Put these Commands in the body of the message not the subject: SUBSCRIBE BRAINTMR your name (to join the list) SET BRAINTMR NOMAIL (suspends mail delivery for vacation etc.) SET BRAINTMR MAIL (turns the mail back on) --> SET BRAINTMR DIGEST (compacts postings into one message per day) NEW SET BRAINTMR NODIGEST (turns off above. get messages as they arrive) SIGNOFF BRAINTMR (to leave the list completely) REVIEW BRAINTMR (to get a list of the subscribers) SET BRAINTMR REPRO (sends you a copy of your post to the list) SET BRAINTMR NOREPRO (turns back off the above option; is default) SET BRAINTMR NOACK (will not send you a confirmation of your post) SET BRAINTMR ACK (sends you acknowlegement of your post; default) NEW INDEX BRAINTMR (sends a list of files you can get) NEW GET BRAINTMR LOGmmyy (mmyy=date; returns the archive log for mmyy) ============================================================================== DISCLAIMER: ~~~~~~~~~~~ BRAINTMR NEWS is very informal....... I might have missed some stuff, I might have spelled some stuff wrong**, etc. etc. etc,. If it's wrong it's my fault. etc. etc. etc. Use BRAINTMR NEWS at your own risk. etc. etc. etc. -samantha, samajane@mit.edu **** Please send corrections, or comments on BRAINTMR NEWS to: Samajane@mit.edu, BRAINTMR listowner Above all, HAVE COURAGE! ---------You have finally reached---THE-END-----------------------------------