Date: Tue, 6 Jun 95 23:14:56 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD196 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#196, 06 June 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 == == 720+ 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 .. Editorial 2 .. Myotrophin 3 .. We Are Not Alone 4 .. Amino Acid N-acetylcysteine 5 .. Hydrogen Pereoxide 6 .. DeathNET 7 .. molecular traffic jams (1) ===== Editorial ========== If you sent me a note ... and it has not yet been published, then you should send it to me again. There is no censorship here (at lease not yet). But sometimes things do get lost. Any discussion relating to ALS is appropriate and welcome. Please remember, the editor is not a MD, this network is not sponsored by any organization, it is not a peer reviewed journal, etc. but we do try to make the network useful to all members of the ALS/MND community worldwide. rgds,bro (2) ===== Myotrophin ========== DATE : 06/03/95 SOURCE: The Philadelphia Inquirer Cephalon Inc stock rises 14 percent after company's drug Myotrophin is reported to be doing well in human testing against Lou Gehrig's disease, or Amyotrophic Lateral Sclerosis, and company receives patent for use of the drug as a treatment for the peripheral nerve damage caused by chemotherapy. (3) ===== We Are Not Alone ========== The International Alliance of ALS/MND Associations was founded in November 1992 to provide a forum for support and the exchange of information between the worldwide associations. This list was created by Sharon Barker, MNDA-UK, January 1995. ARGENTINA .............. Dr. Alberto L. Dubrovsky Asociacion Distrofia Muscular Cordoba 5824, Buenos Aires (1414) ARGENTINA TEL 54 1 773 1714, 54 1 93 4770 FAX 54 1 325 6389, 54 1 93 4579 AUSTRALIA .............. Mavis Gallienne Motor Neurone Disease Association of Australia, Inc. P.O. Box 262, Caulfield South 3162, Victoria, AUSTRALIA TEL 61 3 596 4761 FAX 61 3 596 8005 ALS-Motor Neurone Disease Research Institute, Inc. c/o 3/29 Kitchener Parade, Bankstown, New South Wales 2200 AUSTRALIA TEL 61 2 793 7355 FAX 61 2 793 7569 BELGIUM ................ Gust Geerts ALS Support Group Tielensteenweg 96, 2460 Lichtaart, BELGIUM TEL 32 14 556479 FAX 32 14 556479 BRAZIL ................. Associacao Brasileira de Distrofia Muscular Edificio da Biologia, Sala 348, Cidade Universitaria, San Paulo-SP, BRAZIL BULGARIA ............... Plamen Pintev Bulgarian Neuromuscular Disease Association 96 Pliska Str. Entr. 2, App. 4, Rousse 7004, BULGARIA TEL 359 82 237045 FAX 359 82 452055 CANADA ................. Jan Rodman ALS Society of Canada 6 Adelaide Street East, Suite 220, Toronto, Ontario, M5C 1H6 CANADA TEL 1 416 362 0269 FAX 1 416 362 0414 COLUMBIA ............... Ivan Dario Artega Fundacion Omega Carrera 30 No. 89-79 (La Castellana), Bogota, COLUMBIA TEL 57 1 2365004, 57 1 2183315 CROATIA ................ Marija Sostarko Union of Muscular Dystrophy Societies of Croatia Nova Ves 44, 41000 Zagreb CROATIA TEL 38 541 235595 FAX 38 541 235595 CYPRUS ................. Dr. Lefkos T. Middleton Cyprus Institute of Neurology and Genetics P.O. Box 3462, Nicosia, CYPRUS TEL 357 2 497635 FAX 357 2 427308 DENMARK ................ Ms. Jette Moller Muskelsvindfonden Kongsvang Alle 25, DK-8000 Arhus C, DENMARK TEL 45 89 48 22 22 FAX 45 89 48 22 12 FINLAND ................ Finnish Muscular Dystrophy Association Lihastautiliittory, Lantinen Pitkakatu 35, 20100 Turku, FINLAND TEL 358 21 2500 233 FAX 358 21 2335 503 FRANCE ................. Claude Blanchard ARS (Association pour la Recherche sur la Sclerose Laterale Amyotrophique) 24 rue Lacharriere, 75011, Paris, FRANCE TEL 33 1 43 38 46 13 FAX 33 1 43 38 31 59 GERMANY ................ Horst Ganter Geshchaftsfuhrer, Deutsche Gesellschaft fur Muskelkranke e. V.DGM, Bundesgeschaftsstelle, Rennerstrasse 4, D-79106 Freiburg, GERMANY TEL 07 61 277932 FAX 07 61 277912 GUAM ................... Madeleine Z. Bordallo Guam Lytico and Bodig Association P.O. Box 1458, Agana, 96910 GUAM TEL 671 477 2293 FAX 671 477 2294 ICELAND ................ Rafn Jonsson MND Socirty of Iceland MND felagio, Hofdatuni 12 b, 101 Reykjavik, ICELAND TEL 354 5622004 FAX 342 5522632 INDIA .................. Nicky Bhagat Motor Neurone Disease Association of India 40 Kolagarh Road, Street No. 5, Rajendra Nagar, Dehra Dun (UP) 248 001 INDIA TEL 91 135 23675 IRELAND ................ Eithne Frost Irish Motor Neurone Disease Association Carmichael House, North Brunswick Street, Dublin 7, IRELAND TEL 353 1 8730422 FAX 353 1 8735737 ITALY .................. Mauro Codini Associazione Sclerosi Lateral Amiotrofia c/o Centro Medico di Riabilitazione, Via per Revislate, Veruno 28010 (NO), ITALY TEL 39 322 830101 FAX 39 322 830294 JAPAN .................. Yukio Matsuoka Japan ALS Association 9-10-701, Shin-ogawa-Cho, Shinjuku, Tokyo 162, JAPAN TEL 81 3 3267 6942 FAX 81 3 3267 6940 LUXEMBOURG ............. Foundation Dedicated to Neuro-Motor Handicapped People Foundation IMC, Kraizbierg, Route de Zoufftgen, L-3598 Dudelange LUXEMBOURG TEL 352 51 79 21 FAX 352 51 77 21 MALAYSIA ............... Prof. M. Ali Noor Ghani Malaysian MNDA c/o Malaysian Invention and Design Society, Taman Teknologi Malaysia, Lot 10, Jalan Jaya 5, Taman Jaya, Bendar Tun Razak, 56000 Kuala Lumpur, MALAYSIA TEL 60 3 9315846 FAX 60 3 9300349 MEXICO ................. FYADENMAC (Familiares y Amigos de Enfermos de la Neurona Motora AC) Armando Nava Escobedo Maestro Rural Num, 74, Col. Un Hogar para Nostros, Mexico 11330 D.F. MEXICO TEL 52 5 3 41 15 95 NETHERLANDS ............ Mr. J.R.A. Baas Vereniging Spierziekten Nederland ALS Diagnostic Support Group Lt. Gen. van Heutszlaan6, NL-3743 JN Baarn, THE NETHERLANDS TEL 31 2154 18400 FAX 31 2154 21616 ALS Research Fund/Stichting ALS Onderzoekfonds Joos van Clevelaan 8, 3723 PG Bilthoven, NETHERLANDS TEL 31 30 280346, 31 30 533591 FAX 31 30 533665 NEW ZEALAND ............ Mrs. Dorothy Nicholas Motor Neurone Disease Association of New Zealand P.O. Box 1613, Auckland, NEW ZEALAND TEL 64 9 376 5405 FAX 64 9 360 2305 NIGERA ................. Dr. T.K. Raheem ALS/MND Support Group P.O. Box 1397, Ikeja, Lagos, NIGERIA NORWAY ................. Bjorg Hille Grimen Kontaktgruppen for ALS Foreningen for Muskelsyke, Hardangervegen 314, 5232 Helldal, NORWAY PAKISTAN ............... Mrs. Shahida Abdullah Ma Ayesha Memorial Center for Care and Control of Neuromuscular Disease SNPA-22 Block 7/8 (Near commercial area) FMCHS, Karachi, PAKISTAN PHILIPPINES ............ Joel Pelayo ALS Association Philippines Support Group 78 Misikap Extension, Central District, Diliman, Qeuzon City 1100, Metro Manila, PHILIPPINES TEL 63 2 922 8274 FAX 63 2 922 9199 PORTUGAL ............... Fernando Moragdo Associacao Portuguesa de Duencas Neuromusculares Servico de Neurologica, Hospital de Santa Maria, 7600 Lisboa, PORTUGAL TEL 351 1 797 8821 FAX 351 1 797 7782 ROMANIA ................ Dr. C. Vasilescu Neuromuscular Diseases Association of Romania Institute of Neurology, C.P.61-42, RO-75622 Bucharest, ROMANIA TEL 40 1 6756273 SCOTLAND ............... Anne Jarvis Scottish Motor Neurone Disease Association 50 Parnie Street, Glasgow, Scotland G1 5LS UNITED KINGDOM TEL 44 41 552 0507 SOUTH AFRICA ........... Diane Husband Motor Neurone Disease Association of South Africa c/o P.O. Box 781880, Sandton 2146, Transvaal, SOUTH AFRICA TEL 27 11 7064883 FAX 27 11 3394525 SPAIN .................. Dr. Jesus Mora ADELA (Asociancion Espanola de ELA) Apartado Correos 40030, 28080 Madrid, SPAIN TEL 34 1 314 10 10 Ex 237 FAX 34 1 733 66 14 SWEDEN ................. Mia Lundstrom NHR (Neurologiskt Handikappades Riksforbund) Box 3284, S-103 Stockholm, SWEDEN TEL 46 8 6777010 FAX 46 8 24 13 15 SWITZERLAND ............ Sarah Browne MND Support Group 19 Chemin des Curiades, 1233 Lully-Geneve, SWITZERLAND TEL 41 22 757 4866 FAX 41 22 757 1582 TAIWAN ................. Ko-Pei Kao Neuromuscular Service Veterans General Hospital, Shih-pai Taipei, TAIWAN 112, REPUBLIC OF CHINA TEL 886 2 8712121 FAX 886 2 8737870 TUNISIA ................ Prof. M. Ben Hamida ALS Society of Tunisia Institut de Neuroligie, La Rabta 1007, TUNISIA TURKEY ................. Prof. Coskun Ozdemir Association of Muscle Disorders Hatboyu cad. No. 12, Yesilkoy, Istanbul, YURKEY TEL 90 212 5730975, 90 212 6310958 FAX 90 212 6630168, 90 212 5334393 UGANDA ................. Biruduma Students Muscular Dystrophy Association P.O. Box 596, Mbarara, UGANDA UNITED KINGDON ......... George Levvy Motor Neurone Disease Association P.O. Box 246, Northampton NN1 2PR UNITED KINGDOM TEL 44 1604 250505 FAX 44 1604 24726 UNITED STATES OF AMERICA Wendy Abrams Les Turner ALS Foundation 3325 West Main Street, Skokie, Illinois 60076 USA TEL 1 708 679 3311 FAX 1 708 679 9109 Michael Havlicek ALS Association 21021 Ventura Boulevard, Suite 321, Woodland Hills, California 91364 USA TEL 1 818 340 7500 FAX 1 818 340 2060 Dee Holden Norris Forbes Norris ALS Research Center California Pacific Medical Center 3698 California Street, Room 545, San Francisco, California 94118 USA TEL 1 415 750 2398 FAX 1 415 750 5022 URUGUAY ................ Dr. O. Vincent MNDALSU (Motor Neuron Disease and Amiotrofia Lateral Esclerisis in Uruguay) Av. Italia 3318, Montevideo, URUGUAY TEL 598 2 471616 FAX 598 2 475461 To add new entires or amend any of the records in this directory, please contact: Sharon Barker, Secretariat International Alliance of ALS/MND Associations c/o Motor Neurone Disease Association UK P.O. Box 246 Northampton NN1 2PR UNITED KINGDOM TEL 44 1604 250505 FAX 44 1604 24726 (4) ===== Amino Acid N-acetylcysteine ========== Date : Tue, 6 Jun 1995 01:35:00 -0400 >From : OAKPSY@aol.com Subject: Amino Acid N-acetylcysteine Dear ALS World An article appearing in the March/April 1995 Consumers Digest in the Health Digest p.86 has an article entitled "Treating 'Untreatable' Epilepsy Brain Disease". Using the Amino Acid N-acetylcysteine mixed with juice, patients at the Veterans Medical Center, Neurology Service in Gainesville, FL. gained their speech back . The drug is an antioxidant agent that "sponges up" free radicals better than vitamins. This drug was approved by the FDA for use in clearing the breathing passages of cystic fibrosis patients and with polyctstic lung disease, tylenol toxicity and improved healing after gastric surgery. This will be a two part message. Date : Tue, 6 Jun 1995 02:07:00 -0400 >From : OAKPSY@aol.com Subject: N-acetylcysteine N-acetylcysteine can be bought in better health food stores in tablet form and maybe in powder form. It smells like sulfur and is probably why they mixed it with juice. It costs about $40 to $60 dollars a month according the article in Consumers Digest. For further information it says to contact Russell Hurd, Veterans Affairs Medical Center, Neurology Service (127), Gainesville, FL. 32602. It took 16 month of treatment for it to clear away all the free radicals that caused their disease. Since it is in the same areas that ALS patients have problems, ALS scientists might check it out! (5) ===== Hydrogen Pereoxide ========== Date : Tue, 6 Jun 1995 02:15:20 -0400 >From : OAKPSY@aol.com Subject: Hydrogen Peroxide Does mixing one-tenth of Food Grade Hydrogen Peroxide with water and ingesting it cause more oxygen to be released into your system? Are there any dangers? How about trying to enrich a person with ALS with more oxygen such as Hydrogen Peroxide, Hydergine, or breathing oxygen from a bottle and taking an amino acid called N-acetylcysteine ? Has this been tried before? Are there any dangers with this therapy? (6) ===== DeathNET ========== Date : Sat, 3 Jun 1995 13:16:26 -0700 >From : jh@islandnet.com (John Hofsess) Subject: DeathNET: A time to live, a time to die Most readers of ALS Digest are concerned with how to best survive with their illness and maintain the highest quality of life as long as possible. That is what one of the reasons why we provide information from our online WEB site, DeathNET (http://www.islandnet.com/~deathnet) on how to subscribe to this uniquely valuable newsletter. DeathNET houses over 500 files relating to illness, caregiving, "living wills"; and it provides more than 100 links to other information sites of value (examples, Parkinson's WEB, Breast Cancer Research, HIV trials, to name a few). Most of these links are found in the archive known as LAST RIGHTS OnlIne Library. There comes a point however, when some people with ALS wish to become better informed about their "choices in dying" - and they want honest answers to frank questions. Many people with terminal illnesses find candor in rare supply from their doctors. They are not told honestly what is likely to happen to them nor are they advised that they have *any* options except to suffer whatever misery their impersonal illness may inflict upon them as it runs its course. That is another reason why DeathNET exists. DeathNET is a collaborative effort between The Right to Die Society of Canada and Derek Humphry (founder of the National Hemlock Society in the U.S. in 1980 and author of the international best-seller "Final Exit" in 1991). DeathNET came online January 10, and already has received over 16,000 visits. (On average, someone contacts DeathNET every 12 minutes, round the clock.) The site is currently nominated for two Canadian Internet Awards, and was recently featured in the Australian edition of TIME magazine (May 30). It is one of the recommended sites in the upcoming book, Dr. Tom Linden's Guide to Online Medicine (to be published this fall by McGraw Hill). Discover for yourself what DeathNET has to offer - and if there are any suggestions you care to make, as someone with ALS or someone who cares for someone with ALS, please let us know. If you value honesty and freedom of choice, you will find much of interest here. john hofsess editor, "Last Rights" founder of DeathNET email: rights@islandnet.com (7) ===== molecular traffic jams ========== COLUMN: SCIENCE UPDATE DATE : 05/08/95 SOURCE: The Dallas Morning News Scientists suggest mechanism for some symptoms of ALS Molecular traffic jams inside nerve cells may contribute to the symptoms of some people with Lou Gehrig's disease, new research in mice suggests. If scientists can find a way to clear up the traffic problem, they might be able to alleviate some of the symptoms, researchers said. Lou Gehrig's disease, also called amyotrophic lateral sclerosis, is a rare condition in which nerves that control muscles degenerate. People with the disease eventually lose control of their muscles. About 70 percent of patients have an excess of thin, elongated structures - called neurofilaments - inside their nerve cells. In normal cells, important components get from one part of the cell to another by moving along neurofilaments. Scientist at McGill University in Montreal studied mice that were genetically engineered to produce extra neurofilaments. Writing in the latest issue of the British journal Nature, the researchers observed that proteins and other materials didn't move as well in the nerve cells of the genetically engineered mice as in nerve cells from normal mice. The parts of the cell that didn't receive the normal supply of components degenerated, similar to the nerve cells of people with the disease. - Sue Goetinck === end of als 196 ===