Date: Wed, 12 Jul 95 02:50:32 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD202 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#202, 11 July 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == 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 == == 800+ 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 .. FALS Therapeutics Working Group 2 .. pulmonary management 3 .. environmental connection 4 .. "Living SMArt" 5 .. re: Good News 6 .. Communication aids 7 .. re: Communication aids 8 .. low B12 levels 9 .. 6TH INTERNATIONAL SYMPOSIUM ON ALS/MND 10 . computer upgrade questions 11 . police department patches 12 . BMJ Home Page 13 . ALS/MG relationship? (1) ===== FALS Therapeutics Working Group ========== Date : Tue, 11 Jul 1995 12:58:22 -0500 >From : gurney@nwu.edu (Mark Gurney) Subject : FALS Therapeutics Working Group The members of the group may like to know about our efforts to use transgenic mice as a preclinical screen for promising ALS therapeutics. The basis for our work is the finding in 1993 by Dr. Robert Brown at the Massachusetts General Hospital and Dr. Teepu Siddique at Northwestern University that some patients with an inherited form of ALS have mutations in the gene, SOD1, encoding the enzyme, Cu,Zn superoxide dismutase (Nature 362:59-62, 1993). We then made transgenic mice that contain a copy of the mutant human SOD1 disease gene. The mice develop a disease which is a very close copy of human ALS (Science 264:1772-1775). They provide an important model with which to investigate the cause of this genetic form of ALS and with which to test therapeutics. We have now sent the mice to 24 different scientific teams in the USA and Europe (9 in industry and 15 at universities). We also deposited the mice with the Induced Mutant Resource of The Jackson Laboratory where they now are available for purchase. We also have formed a collaborative effort, the FALS Therapeutics Working Group, with initial funding from the Muscular Dystrophy Association (New England Journal of Medicine 331:1721-1722, 1994) to test therapeutics in this animal model. The FALS Therapeutics Working Group so far has brought together 12 different research teams in industry and at universities which currently are testing 22 different therapeutic protocols. Therapeutics under evaluation by the working group include antioxidants, copper chelators, neuronal growth factors, neuroprotective agents, anti-excitotoxins, and nitric oxide synthase inhibitors. Several protocols also are testing genetic therapies. Information about participation in the working group can be obtained from me or from Norine Stirpe, PhD (Muscular Dystrophy Association, 3300 E Sunrise Dr., Tucson, AZ 85718) This is an intense, world-wide effort to understand and treat ALS. Hopefully, we will have something positive to report in the near future. ALS is a devastating neurological disease. We all want to find a cure. Sincerely, Mark Gurney, PhD Associate Professor Department of Cell, Molecular & Structural Biology Northwestern University Medical School 303 East Chicago Avenue Chicago, IL 60611 office: 312-503-4312 fax : 312-503-7912 e-mail: gurney@nwu.edu ************************************** (2) ===== pulmonary management ========== Date : 08 Jul 95 15:26:09 EDT >From : "Pamela Cazzolli, RN" <74553.2036@compuserve.com> Because I have a special interest in the pulmonary management of ALS, I would be interested in hearing from persons who are using tracheostomy or nasal mask ventilation (via the BiPAP or volume cycled ventilator) or other forms of non-invasive ventilation. I would enjoy hearing from family members and medical professionals as well. I have been the Nurse Consultant for the ALS Association Eastern Ohio Chapter for 7 years, have previously served as the Nurse Coordinator of the ALS Center of the Cleveland Clinic Foundation for 6 years, and have been the nurse facilitator of an ALS support group for 11 years. Since I have been specializing in ALS as a home care consultant since 1984, I am currently providing educational programs on the management of ALS (including other neuromuscular disorders). Thank you for providing me your information. Pamela A. Cazzolli, R.N. 6179 Granite Street N.W. Canton, Ohio 44718-1041 USA Voice: (216) 497-1792 FAX: (216) 497-0726 Internet e-mail: 74553.2036@compuserve.com ***************************************************************** ********************************** (3) ===== environmental connection ========== Date : Thu, 6 Jul 1995 11:50:13 -0400 >From : LGHarper@aol.com Subject: ALS info I would also like to know if the digest deals with an environmental connection between exposure to certain classes of chemicals and degenerative nervous disease-(DND). Research indicates that organophosphates, solvents, and pyridine compounds, such as paraquat, initiate a chain of effects which culminates in classic symptoms of DND with the end result being full-blown degenerative nervous diseases. There is an increase of degenerative nervous diseases throughout the West of which four types are linked more to chemical exposure. They include: Parkinson's Disease, Motor Neuron Disease, with ALS being the most common, Multiple Sclerosis and Myalgic Encephalomyelitis. It is believed that the biochemical avenues initiated by synthetic chemicals vary from the biochemical avenues initiated by naturally-occurring factors. I have not found any research which discusses the variance of pathway and symptomology at the onset, if you are familiar with such research, I would appreciate your sharing that information with me. I realize that most research concentrates on natural causes such as viruses, genetic defects, naturally occuring toxins, etc. primarily because of vested interest groups, and entrenched thinking from the medical and scientific establishments. I personally would like to particpate in a proactive pursuit of creating awareness, relaying pulic concern, and pushing towards money allocation for environmental research in the neurodegenerative areas. Hopefully, with more public paricipation, request, and outcry, the scientific and medical communities, the government, and industry, will begin to listen and respond. If the Digest does acknowledge the environmental cumulative impact, does it have a listing of medical doctors who specialize in environmental DND, and/or doctors who would be open to working with patients utilizing natural substances, such as intravenous magnesium for MND? Thank you for your time and your responses. Linda Harper (4) ===== "Living SMArt" ========== Date : Tue, 27 Jun 1995 13:46:56 -0400 >From : PRICEZRITE@aol.com (June Price) Subject: "Living SMArt" For Immediate Release "Living SMArt" 3576 South 43rd St., # 32 Milwaukee, WI 53220-1550 414/541-2848 Contact person: June Price Newsletter for Adults with SMA "Living SMArt" is a bimonthly newsletter written by and for adults with spinal muscular atrophy. It features information, networking and support for adults with SMA as well as parents of children with the disease. Subscriptions start at $6/year U.S.; $20/international. A complimentary issue is available by writing "Living SMArt", June Price, Editor, 3576 S. 43 St., #32, Milwaukee, WI 53220-1550, or by e-mailing: LivngSMArt@aol.com "Living SMArt", Living with Spinal Muscular Atrophy-Reaching Tomorrow, offers hope and a positive outlook for those with SMA. June Price, Editor - Living SMArt (5) ===== re: Good News ========== Date : Mon, 10 Jul 1995 15:21:42 -0400 >From : JACKN74940@aol.com Subject: Re: ALSD201 ALS-ON-LINE Please note a more humane point of view to when good news should be released ... re: LA Times Good news must not be hidden! The article from June 25th LA Times identifies concerns that sharing good news with the terminally ill must be controlled. The MDA representative faults Cephalon (and earlier RPR) for sharing the good news with the "Lay" population. I am grateful to the drug companies for sharing the results of their drug trials as soon as they can review the data! This data belongs to the drug sponsor. Not the neurological associations, the MDA, or the New England Journal of Medicine. I am only interested in the FDA receiving the trial data for review and approval. If the drug companies want to share the findings with the "Old guard" as they are filing their application for Marketing with the FDA that is their business. If they can not be published in a Journal so that doctors are aware of the findings, then notify USA today, CBS evening news and other forms of mass communications. The old protocols of peer review and publication cost lives! The FDA is the final peer review and authority on whether a drug is effective and safe. We will not tolerate being "Protected to Death" by the New England Journal, neurological Association or the MDA. The "Old guard" set of protocols are being replaced with a new paradigm that has a sense of urgency and humanity. Information will not be embargoed. Giving the terminally ill Hope is good news! We are all adults. There is either Hope or no Hope. If the FDA doesn't approve a hopeful treatment, then as adults we will seek out new efforts that will renew our Hope. No one should ever be allowed to withhold Hope! We must write the MDA to make sure another layer of protocols are not being put inplace before announcing life saving drugs. The Quest continues! Jack Norton (6) ===== Communication aids ========== Date : Wed, 5 Jul 1995 18:05:59 -0400 >From : gbluhm@head-cfa.harvard.edu (Gerald M. Bluhm) Subject: Communication aids Hello, My mother (age 73) has recently been diagnosed as having ALS. So far she has been showing a little weakness in her right hand (she's right-handed) and she has trouble swallowing and speaking. She is very hoarse, her speech is a bit slurred, and it takes a lot of energy for her to talk. We are starting to look into communications devices to help her so she won't have to use her voice. Specifically, a clinic at Children's Hospital in Boston is recommending the Zygo SL35 which has DECtalk speech synthesis as an option, 36 savable memos, and lots of other features, according to the spec sheet. Zygo also makes a model SL5 which has fewer features and no speech synth. What I would like to know is: What are people's experiences with these devices or similar products from competitors? Is there a FAQ somewhere that already has reviews? How do they compare with other "devices" such as Macs with similar software? The SL35 weighs only 1 lb. 12 oz. I think that's a lot less that a Powerbook. Thanks, Gerry Bluhm (7) ===== re: Communication aids ========== >From : vitale@DECTLK.ENET.DEC.COM Date : Wed, 5 Jul 95 22:21:01 EDT Subject: your mother's illness Gerry: There a new product from Digital called DECtalk(tm) Express which is a serial-line DECtalk (i.e., plus into almost any computer) and weighs only 15 oz. It contains V4.2 of DECtalk software. Call me at Digital if you have any questions (508) 467-3833 or e-mail me at the above address. Incidentally, I was one of the developers of the original DECtalk in the early '80s and am still with the speech group. Ironically, two years ago, I was diagnosed with ALS. \tony (8) ===== low B12 levels ========== Date : Tue, 11 Jul 1995 11:05:53 -0400 >From: dianas@l7indy2.gsfc.nasa.gov (Diana Specht) Is there any connection between Amyotrophic Lateral Sclerosis and low Vitamin B12 levels? My hematologist said there are several neurological diseases that can cause low B12 levels. I am wondering if ALS is one of them. If not, does anyone know what neurological diseases CAN do this??? Diana Lyons Specht (9) ===== 6TH INTERNATIONAL SYMPOSIUM ON ALS/MND ========== 30 October to 1 November 1995, Dublin, IRELAND Scientific meeting: Pathogenesis & Treatment of ALS/MND Programme Chairmen: Dr. Michael Swash and : Dr. Orla Hardiman Clinical meeting : Quality of Life Issues In MND Programme Chairman: Dr. Tony O'Brien Hosted by : Irish Motor Neurone Disease Association Sponsored by : International Alliance of ALS/MND Associations Coordinated by : Mary Pearson : Motor Neurone Disease Association (UK) : P.O. Box 246 : Northampton NN1 2PR : UNITED KINGDOM : TEL (--) +44 1604 22269 : FAX (--) +44 1604 24726 The International Alliance of ALS/MND Associations was inaugurated in November 1992. It exists to provide mutual support between associations, providing a forum for information exchange and the development of ideas on good practice. (10) ===== computer upgrade questions ========== Date : Sun, 09 Jul 1995 16:18:07 EDT >From : PDNS06A@prodigy.com ( D L BARBER) Subject: computer upgrade questions I was diagnosed with ALS earlier this year, and have decided to upgrade my PC system, in order to continue working at home, when that becomes necessary. What I am looking for is advice, something towards the technical end, (I am neither a computer buff nor techno-wizard) that I can sink my teeth into as I shop for NEW HARDWARE. Advice on things like; 485 vs 586 ... minimum hard drive size ... minimum megahertz speed ... add'l drive bays and/or serial ports ... anything that will help in the use of communication aids, as I will undoubtedly have to clear that hurdle sometime later this year, or early next. I will most likely be having to use other aids as well, like a special keyboard or a wand for a keyboard, and/or eyebrow switch(es), and again, would be happy to get input on what type of a hardware system is best suited for these applications. Equally as important, is if there are certain parts/manufacturers/systems/etc. to stay away from, that would be much appreciated as well. As for software for communication assistance, I'll be looking for that in a month or two, after I get the new system bought and running, not to speak of transferring existing files from current system. Thank you in advance for any help you can muster. D L Barber PDNS06A@prodigy.com (11) ===== police department patches ========== >From : schewe@newsserver.sfu.ca (Tim Schewe) Newsgroups: alt.law-enforcement Subject : patches Date : 5 Jul 1995 17:45:36 -0700 This is a quote from the June-July issue of Blue Line, Canada's National Law Enforcement Magazine: "Al Evans is an avid patch collector and a past member of the Royal Canadian Mounted Police and Medicine Hat Police Department. He is still an active member of the International Police Association. Al has been diagnosed with Amyotrophic Lateral Sclerosis (A.L.S.) better known as Lou Gerhig's Disease which is at present incurable and untreatable. Al is no longer able to work and one of the few hobbies he still enjoys is Police Patch Collecting. His goal is to have the largest and most complete police patch collection in the country. He wishes to turn this collection over to Chief Bill Spring for display with the Medecine Hat Police Department. Al has agreed to share some of his knowledge in a monthly column about the more interesting patches in his collection. If you have an interesting or extra patch of your agency it would be appreciated if it could be donated to this worthwhile collection. Send all donations to: The Al Evans Collection, 24 Stone Crescent S.E., Medicine Hat Alberta T1B 3K9 CANADA I am posting this to give it more exposure on my own initiative. (12) ===== BMJ Home Page ========== Date : Fri, 26 May 1995 12:51:57 EDT Sender : "Clinical WANS: Design & Usage" : >From : Dr Alan Hassey Subject: BMJ Home Page ----------------------------Original message---------------------------- The British Medical Journal (BMJ) is now online at: http://www.bmj.com/bmj/ -- Alan :-) ************************************************ * Dr Alan Hassey - alan@midwife.demon.co.uk * * GP Trainer & GP Computer Adviser - N Yorks * * Compiler RISC OS 3.1+ Internet Starter-Pack * ************************************************ (13) ===== ALS/MG relationship? ========== Date : Thu, 22 Jun 1995 14:55:17 -0400 >From : ONEPALS@aol.com Subject: A.L.S./M.G. Relationship I am a 57 year old male dx'd w/als 11/94 (Sporadic, Limb onset). My 32 year old daughter was dx'd with Myasthenia Gravis approx 6 years ago. To further polute the already muddied waters, I am told that my father who passed away in 1969, is believed to have had Parkingson's, although the cause of death was listed as cancer. I have not been able to verify that my father had Parkinsons. My Neurologist has expressed some interest in the fact that my daughter has MG, but says he knows of no link between ALS and MG. Would like to know if anyone knows of any research that would tie the two diseases together, or if rotten luck just runs in our family. Bob Johns / onepals@aol.com === end of als 202 ===