Date: Mon, 31 Oct 94 11:34:19 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#139 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#139, 31 October 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ----- == == This e-mail list has been set up to serve the world-wide == == ALS community. That is, ALS patients, ALS researchers, == == ALS support/discussion groups, ALS clinics, etc. Others == == are welcome (and invited) to join. The ALS Digest is == == published (approximately) weekly. Currently there are == == 370+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == Sorry, but this is *not* a LISTSERV setup. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== CONTENTS OF THIS ISSUE: 1 .. guidelines for treatment/management? 2 .. ALSA MUST LISTEN! 3 .. Telephone Assistance Devices 4 .. Book on football coach 5 .. ALS research information needed 6 .. Huntington's Disease (Chorea)? 7 .. Vitamin E 8 .. Prodigy ALS bulletin board 9 .. Medical Sciences Bulletin WWW Site 10 . RHETT'S DISEASE 11 . CytoTherapeutics, Inc. (1) ===== guidelines for treatment/management? ========== Date : Mon, 24 Oct 94 15:53:13 PDT >From : "Lorene Nelson" Subject: I am relaying a request from a person who is not a member of the ALS Interest group. His name is John Lasfargues, and he is a health systems analyst for the Paralyzed Veterans of America. John is interested in whether any published (or in progress) practice guidelines exist for the treatment and clinical management of people with ALS. If you know of any, please let me know and I'll pass on the information. ********************************************* * Lorene Nelson, PhD * * Division of Epidemiology * * Stanford University School of Medicine * * MR.LOR@forsythe.stanford.edu * ********************************************* (2) ===== ALSA MUST LISTEN! ========== Date : Tue, 25 Oct 1994 20:59:00 -0400 >From : JACKN74940@aol.com Subject: ALSA MUST LISTEN! Bob, the power of cyberspace is to connect those separated by distance and to share information and ideals. Please insert this in your next digest! Time sensitive effort - I would like to hear from 300 internneters - We must keep Prodding to be heard. Jack Norton ALS PATIENTS TO ADDRESS PRIORITIES TO ALSA. On Nov 5th, the ALSA advocacy committee is conducting a session including advocates from the PROD!. The ALS patients on Prodigy are presenting their goals to ALSA in hopes that they will be embraced by the organization that represents them. The goals that have been identified by many ALS victims for over a year and have focused on three key areas 1) Combination Drug trials - planning and support of them needs immediate attention 2) Compassionate Access is a necessity - the CHOICE to take experimental drugs should be made available and 3) Cessation of Placebos on the terminally ill! Never Again will we be scarificed on the altar of Lazy Science ! Other methods could have been used or developed. Stop Inhumane experimentation. We want the widest amount of input before we meet with ALSA. Certainly research funding is an issue at NIH and Long term Care and we will present these as goals also. We strongly believe there is no magic bullet and Combination trials as documented by Dr Mitsumoto must be attempted - as least on a small scale to see if we have a blockbuster...VOTE YES FOR 1) COMBINATION TRIALS 2) VOTE YES FOR COMPASSIONATE ACCESS AND 3) VOTE YES FOR THE CESSATION OF PLACEBOS Send a message to ALSA email at JACKN74940@aol.com Jack Norton will deliver it - Keep Prodding! The Quest Continues (3) ===== Telephone Assistance Devices ========== Date : Mon, 24 Oct 94 11:33:25 EST >From : "Mike Doliton" Subject: Telephone Assistance Devices Dear Grant, I think you're on the right trail. A speaker phone and the SPRINT voice dialing would work fine for your dad. He only needs a relay that could turn the phone on and off. I could try to invent this relay for you. This relay would be operated by two switches. One to turn the phone on and one to turn it off. What functions does your dad have left? Head movement or some hand movement? The speaker phone would have to be modified but this mod. is very simple. Only two wires into the phone across the hook switch. Best of regards, Michael Doliton Sony Medical Systems (4) ===== Book on football coach ========== Date : 29 Oct 94 14:44:54 EDT >From : Wayne Phillips <70303.173@compuserve.com> Subject: Book on football coach The book about the football coach with ALS: Charlie's Victory Charlie and Lucy Wedemeyer US $16.99 Zondervan Publishing House 5300 Patterson Ave. S.E. Grand Rapids, MI 49530 Bookstores can order it for you. Most libraries will buy books you request so you can check them out. (5) ===== ALS research information needed ========== Date : Sat, 29 Oct 1994 09:02:04 -0400 >From : rbm@hookup.net (Robert Macdonald) Subject: ALS research information needed Many studies, I am told, have been done to monitor the chemical changes in ALS patients during the degenerative process. I, being an ALS patient, have asked how I can help research by monitoring the chemical changes in my body (such as changes in blood or urine). However, I would also like to avoid duplicating previous studies that were unsuccessful. Does anyone know how I can find out what studies have been done to date? Is there any central source - institution or publication? Should I search the Internet world? What should I do to get the information I need? Any helpful advice will be very much appreciated. Thanks, Robert Macdonald. rbm@hookup.net (6) ===== Huntington's Disease (Chorea)? ========== Date : Mon, 24 Oct 94 08:28:07 EDT >From : D=MEYER%MA%166tag@DEILG.ANG.AF.MIL Subject: re: ALSD137 ALS-ON-LINE Does anyone know of a newsletter or digest similar to the ALS Digest, but with information on Huntington's Disease (Chorea)? This is a great source of information and support. Thanks. (7) ===== Vitamin E ========== >From : Stuart Lory Subject: Vitamin E Date : Mon, 24 Oct 1994 22:11:10 -0700 (PDT) For many years patients of our Society in British Columbia have been taking 800 IU of Vitamin 'E' as the most useful anti-oxidant. Recent rumour has spread that this daily dosage could cause cerebral damage. Do any other digest readers have any confirmation of problems associated with vitamin 'E'? It is noted that the maximum recommended dosage for a normal healthy person should not exceed 200 IU per day. If there is proven clinical evidence of harm, we would appreciate comments. Phil Bissell President, Victoria chapter, ALS Society of British Columbia (email via slory@access.victoria.bc.ca) (8) ===== Prodigy ALS bulletin board ========== Date : Sun, 23 Oct 1994 21:56:32 -0500 (CDT) >From : HEINET@wartburg.edu Subject: Prodigy ALS bulletin board Re your request in ALS Digest 136 for information on the Prodigy ALS bulletin board. This is a very active bulletin board averaging 200+ messages a week with over 300 participants. It focuses on interaction among patients and caregivers, with emphasis on helpful hints for managing ALS, information on drug trials and drug side effects as well as drug benefits, ALS advocacy issues (ending placebos, combination trials, compassionate access to potentially life saving drugs as soon as safety is assured), and messages that bolster each other's spirits. To access individual Prodigy members from Internet one sends a message to the subscriber's Prodigy address: four letters, two digits, one letter @prodigy.com. Mine for instance is "TASM76A@prodigy.com" The Prodigy member pays approximately ten cents per internet message received. (In other words, please don't send me a Prodigy message unless it's urgent, use Internet instead.) To get set up with Prodigy call 1-800-prodigy (800-776-3449) and tell them you want to subscribe. Current price is $9.95 a month (it just went down last week from $14.95) You will receive software in the mail. To reach the ALS bulletin board, at the prompt "type a jumpword" enter "medical support bb" You then want the topic "neurological" and the subject "A.L.S." with the three periods. When you first achieve access you will want to backdate a month or so to read the traffic. There is no sysop. Some key people are Jack Norton, Linda McKnight, James Rather, but one catches on quickly and is welcome to participate. ALSA monitors the bulletin board and their VP for patient services, Lynn Klein, participates. Ted Heine at Wartburg College, Waverly, Iowa (9) ===== Medical Sciences Bulletin WWW Site ========== Date : Mon, 31 Oct 1994 03:23:34 +1100 >From : jmack@pipeline.com (John Mack) Subject: Medical Sciences Bulletin WWW Site ANNOUNCING: Medical Sciences Bulletin Archives (MSB-A), is a WWW-based source for information about new advances in the rapidly developing field of clinical pharmacology with clear, concise summaries of new drugs, practical issues in cancer health care, and in-depth reviews of important health-related topics. Articles appear under the following categories: Analgesic and Anesthetic Drugs Anti-Infective Therapies Anti-Inflammatory, Antiallergic, and Immunologic Drugs Cardiovascular Drugs Endocrine and Metabolic Drugs Gastrointestinal Drugs Oncology Drugs Psychopharmacologic and Neurologic (CNS) Drugs Respiratory Drugs Unique to MSB-A are the hypertext links it will provide to manufacturer- sponsored information about their products. This information, which may include package inserts, product monographs and clinical trial data, can be accessed via hypertext links that appear in MSB articles or where you see =B3Click here for additional information from the manufacturer.=B2 Articles may also be linked to related medical information on the Internet, including in Oncolink, the University of Pennsylvania's Multimedia Oncology Resource. MSB-A is accessed via Pharmaceutical Information Associate's homepage: URL=3Dhttp://cancer.med.upenn.edu/0h/buhle/pia1/piahp2 which also will include links to DrugFAQs(tm) and an archive of threads from the sci.med.pharmacy newsgroup. These drug-specific areas will be organized by drug and drug category much the same as are the articles in MSB-A. ------------------------------- John Mack 516-271-0926 Pharmaceutical Information Associates http://cancer.med.upenn.edu/0h/buhle/pia1/piahp2 =46ormer MecklerWeb partner. =46ounding member of PharmInfoNet, a new Web site devoted to pharmaceutical information. jmack@pipeline.com or 70411.377@compuserve.com -------------------------------- (10) ===== RHETT'S DISEASE ========== Date : Wed, 26 Oct 1994 23:23:00 +0200 Sender : BIOMED-L Biomedical Ethics >From : Robert Werman Subject: RHETT'S-DISEASE Can anyone help me with a description of Rhett's disease, a neurological condition affecting young girls? And point me to some scientific literature and a reseach center where work is being done on the disease? Thanks in advance. __Bob Werman, MD rwerman@vms.huji.ac.il Jerusalem (11) ===== CytoTherapeutics, Inc. ========== PROVIDENCE, R.I., Oct. 25 /PRNewswire/ -- CytoTherapeutics, Inc. (Nasdaq: CTII) announced that it filed today with the Securities and Exchange Commission a Registration Statement for a proposed public offering of 2,000,000 shares of Common Stock. < parts deleted > CytoTherapeutics is a leader in the development of novel cell therapy systems designed to deliver therapeutics substances to the central nervous systems (CNS). The Company believes that its core technology, consisting of cell-containing, biocompatible implants, may be used to deliver a variety of therapeutic substances within the blood- brain barrier, potentially overcoming a fundamental obstacle to effective treatment of CNS diseases. The Company is currently developing products for the treatment of chronic pain. Parkinson's disease, amyotrophic lateral sclerosis (ALS) and Alzheimer's disease, with additional research efforts directed to several other CNS disorders. < parts deleted > CONTACT: Daniel E. Geffken, Chief Financial Officer of CytoTherapeutics, 401-272-3310, ext. 2126 === end of als 139 ===