Date: Thu, 26 Jan 95 23:24:03 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#169 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#169, 26 January 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot'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 == == 460+ 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 .. ALS Digest back issues 2 .. Neurontin Trial 3 .. FOR ANTONIO 4 .. GDNF - glial cell-line derived neurotrophic factor 5 .. WWW PharmInfoNet 6 .. Ed Culberson 7 .. the HEADS UP news filter (1) ===== ALS Digest back issues ========== Thanks to Stuart Neilson and his coworkers at Brunel University, back issues of the ALS Digest are available via the World Wide Web at URL: http://http1.brunal.ac.uk:8080/~hssrsdn/ and they are available via anonymous FTP at: src.brunel.as.uk , in the directory "cshsd/alsig/archive". (2) ===== Neurontin Trail ========== Date : Thu, 26 Jan 1995 00:41:44 -0700 (MST) >From : raul mandler Subject: Re: ALSD#168 ALS-ON-LINE Dear ALS patients, relatives, friends and health care members: The Neuromuscular Program of the University of New Mexico in Albuquerque is joining the Western ALS Group (WALS) in participating in the double-blind, placebo-controlled trial of Neurontin for ALS. At this stage, we plan to assess at least 20 patients with definite ALS with a disease duration of less than 3 years. Our Center is currently participating in the CNTF/Synergen trial. Ms.Joan Werner, the Research and Clinical Coordinator, Ms.Martha Meister, the Neuromuscular Research nurse, Mr. Rick Murdoch, the Neuromuscular Physical Therapist and I will appreciate your referrals or concerns. Please, address all correspondence or call us at: RAUL N. MANDLER, M.D. ASSOCIATE PROFESSOR NEUROLOGY AND ANATOMY DIRECTOR, NEUROMUSCULAR CLINIC, MDA AND NEUROMUSCULAR RESEARCH LAB DEPARTMENT OF NEUROLOGY THE UNIVERSITY OF NEW MEXICO HEALTH SCIENCES CENTER ALBUQUERQUE, NM 87131 PHONE/VOICE MAIL (505) 272-6356 FAX (505) 272-6692 Thank you very much for your consideration (3) ===== FOR ANTONIO ========== Date : Tue, 24 Jan 95 08:48:34 GMT >From : messinaa@ii1ss03.settimo.italtel.it (A. Messina +39 2 4388 7450) Subject: FOR ANTONIO \\\\\\\\\\\\\\\\\\\\\\\\\ Hi everyone, This is the e-mail I hoped I'd have never written. Antonio passed away on thursday, january 5th, 1995. Antonio was the father of a friend of mine. He was 66 years old, and was diagnosed with ALS in october, 1993. In the past 5 months I tried to collect informations to help Antonio and his family to struggle with this terrible disease, and, as I told you in my "HAPPY HOLIDAYS" e-mail, I had the chance to experience the uselfulness of this group, and the wonderful spirit of all the people who are unfortunately involved in this experience. It has been a great lesson of life for me, and I'll never forget it. I found a lot of info and provided my friends with it, but it didn't help to prevent the sudden end of Antonio's life. Antonio had tubes in his stomach to be able to eat, but he was still able to breathe. On thursday he suddenly suffered of pneumonia, was urgently carried to the closest hospital, but there was nothing to do. He passed away in the late evening of that thursday. Antonio had always worked in his own little factory, he was used to make decisions and be the one who gives the commands. In the first months of his illness he couldn't accept to be dependent on other people to do every little, basic thing of everyday's life. He couldn't accept his condition, refused to talk, to eat and to try and communicate, when he lost the ability to speak. In August, when I gave his relatives all the documentation I found on the network, and the printouts of all the messages of encouragement from all of you, he understood that he should have changed his behavior. His daughter, Monica, sat by his bed and read, translating from english, all the e-mails I had collected, and he reacted very well. Then they found the way to get Neurontin, and a little hope to slow down the disease helped him to react. Last Christmas Monica brought me a present and on the Greetings Card there was a line of thanks from Antonio, written with the pc tool. It was one of the best moments of my life... He asked to meet me, but he didn't have the time... Now, I don't want to stop receiving your letter, because I want to remain in contact, and follow what's going on with this terrible disease. In the next days I'll collect a list of all the suggestions I got from all of you, and send it to the group. Many of you will know these hints already, but even if I can help only one person, I'll be happy to do it. This list may be interesting for Tim (TJaen@ix.netcom.com), who asked me for informations a while ago. I hope you all will never feel the sadness that now is in my heart, and that something will always give you new hope and strenght, like you all gave me when I found so many brave and generous people. I'll always be here in contact with you... Thanks again... ...goodbye Antonio... Alessandro ///////////////////////// FROM: Alessandro Messina Italtel-SIT BUTR-RS-SF Nuovo Prefa CI1B 20019 Castelletto di Settimo Milanese (MI) - Italy Ph.: 011-39-2-43887450 (W) ; 011-39-2-9609310 (H) Fax: 011-39-2-43888549 e-mail address: messinaa@settimo.italtel.it (4) ===== GDNF - glial cell-line derived neurotrophic factor ========== Source: WALL STREET JOURNAL 01/26/95 Title : Medicine: Science Closer To a Treatment For Parkinson's Credit: Michael Waldholz Staff Reporter of The Wall Street Journal Researchers say experiments involving a powerful substance discovered in the human nervous system may lead to new drugs to slow the progress of Parkinson's disease and Lou Gehrig's disease. Four separate research teams are reporting test-tube and animal experiments showing the new substance acts as a biological shield, protecting crucial nerve cells from damage that normally kills them. Death of these cells is the hallmark of Parkinson's and amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. < most of this article deleted > The new growth factor was uncovered by researchers working separately at Synergen Corp., now owned by Amgen Inc., a biotech company in Thousand Oaks, Calif.; and by scientists at Genentech Inc., of South San Francisco, Calif. All four research teams conducted their experiments in association with one of the two biotechnology companies. It is unclear whether ownership rights for the substance will be disputed between Amgen and Genentech. < parts deleted > "It's a fairly exciting set of results," says Ronald Lindsay, vice president for neurobiology research at Regeneron, noting that "it provides strong competition for the [factors] we've been working with." < parts deleted > GDNF was first isolated in 1990 by Frank Collins, a biologist working at Synergen. He identified it in glial cells, which provide nutrients to neurons. Dr. Collins didn't publish the discovery until 1993, when Synergen received a patent. About the same time, Dr. Collins was hired by Amgen. In an interview, Dr. Collins said that acquiring the rights to GDNF was one of the reasons Amgen bought Synergen several months ago. (5) ===== WWW PharmInfoNet ========== Date : Mon, 23 Jan 1995 10:37:03 CST Sender : Anesthesia and Critical Care Resources on the Internet : >From : "A.J. Wright" Subject: WWW PharmInfoNet Announcing PharmInfoNet, A New World Wide Web Site for Pharmaceutical Information --------------------------- --------------------------- PharmInfoNet(tm) is devoted to delivering useful, up-to-date, and accurate pharmaceutical information to pharmacists, physicians, and patients. Some of the resources found on PharmInfoNet include: o A database of articles from PIA Ltd publications Medical Sciences Bulletin and Transgenica: Topics in Clinical Biotechnology, o DrugFAQs(tm) - Frequently Asked Questions about drugs with answers from pharmaceutical manufacturers and other approved sources, o PharmMall(tm) - an area for companies -- pharmaceutical manufacturers, publishers, software developers, etc. -- to place their home pages, catalogs, and product information, o A rotating exhibit of pharmaceutical and pharmacy-related art, photographs and multimedia museum tours, o A moderated archive of drug-related discussion threads from the sci.med.pharmacy newsgroup arranged by drug category, and o Links to other Internet sites of interest to pharmaceutical professionals. This information is provided free to physicians, medical students, pharmacists, nurses, patients and anyone else with access to the Internet and the World-Wide Web. PharmInfoNet is sponsored by Pharmaceutical Information Associates, Ltd. (PIA Ltd), a former MecklerWeb Charter Partner. PIA Ltd is an innovative company that specializes in communicating scientific information to regulatory and health-care professionals. ---------------------------------------- For more information, send a message to: pialtd@ix.netcom.com or call 1-800-584-1063 or 1-215-949-0490 ---------------------------------------- John Mack 516-271-0926 Pharmaceutical Information Associates, Ltd. Creators of PharmInfoNet, a Web site devoted to pharmaceutical information. URL:http://pharminfo.com/ jmack@pipeline.com or pialtd@ix.netcom.com ----------------------------------------------- (6) ===== Ed Culberson ========== Newsgroup: rec.motorcycles.101941 >From : tcora@pica.army.mil (Tom Coradeschi) Subject : Ed Culberson is gone... The following was posted to the BMW mailing list: >From : priest@nando.net (Priest) Subject: Ed Culberson My first time her here but I thought everyone would want to know... Sorry to bring bad news from the motorcycle forum on CompuServe 1/5/95) Ed Culberson passed away last night at the Army Retirement Community in San Antonio. Mr. Culberson had moved to San Antonio from his home in Florida in order to receive treatment for ALS, or Lou Gehrig's desease. He was 65. It was one year ago, almost to the day, that Ed made his last ride on Amigo, his BMW R80 G/S. That same machine carried him over the entire length of the Pan American Highway system, including the treacherous Darien Gap. He was the first motorcyclist to accomplish this feat. He went on to write a book about his adventure entitled "Obsessions Die Hard." Ed was truly a goodwill ambassador for motorcycling and was a fixture on the BMW Rally circuit. His slide shows were always well attended as he provided many with the motivation and knowledge for their own south of the border adventure. ===== = There are almost 10,000 Usenet newsgroups on the Internet. I do not = read very many of them and I have never read the motorcycle newsgroup. = But I want everyone to know that Usenet newsgroup articles can be = searched for key words. That is how I located this article about Mr. = Culberson. I was searching the key word "gehrig" to find this one. = The key word search can easily be done by way of e-mail. = To find out how this is done, please send e-mail to: = netnews@db.stanford.edu = ignore the subject line, in the first message line type "help". . rgds,bro ===== (7) ===== the HEADS UP news filter ========== A partial sample for: Thursday, January 26, 1995 ________________________________________________________________ MUSCULAR & NEUROMUS DISEASE >> FOUR SEPARATE STUDIES published on Thursday offered hope to sufferers of Parkinson's disease and related illnesses, finding an important role for a natural substance that seems to protect nerve cells. [Reuters, 339 words, 906272#] >> BIOGEN REPORTS FOURTH QUARTER AND 1994 RESULTS; REAFFIRMS CLEAR PATENT POSITION FOR BETA INTERFERON - Biogen, Inc. today reported financial results for the year and quarter ended December 31, 1994. [PR Newswire, 656 words, 901460#] >> TEVA'S PLANS TO set up a new manufacturing plant for its beta interferon product Copaxon in Beer-Shebahave not been approved by the Ministries of Health and Environment. [Marketletter, 52 words, 900065#] ________________________________________________________________ CENTRAL NERVOUS SYSTEM >> THE EUROPEAN COMMISSION said on Wednesday it had received a complaint from Denmark about British pharmaceuticals company Glaxo Plc's pricing of its anti-migraine product Imigran. [Reuters, 138 words, 905302#] >> PARKE-DAVIS today introduced an innovative approach to the treatment of Alzheimer's disease that provides 24-hour counseling and support to Alzheimer's disease families through an 800 telephone service. [PR Newswire, 1069 words, 902933#] >> UNTREATED CONGENITAL TOXOPLASMOSIS usually leaves babies with profound developmental, neurologic, and visual impairment. Treatment regimens have varied, but this major study shows good outcomes in the majority of babies treated with pyrimethamine and sulfadiazine. [Journal Watch, 237 words, 900024#] >> JUST WHEN DEXAMETHASONE has gained wide acceptance as adjunct therapy for bacterial meningitis to reduce neurologic complications such as hearing loss, this prospective, multicenter trial seriously questions its value. [Journal Watch, 230 words, 900045#] >> HOW SAFE IS PERTUSSIS VACCINATION IN HIGH-RISK CHILDREN?- Pertussis vaccine is now believed to pose no appreciable risk for neurologic complications in the general population. [Journal Watch, 214 words, 900034#] ________________________________________________________________ INT'L PHARMACEUTICAL NEWS >> COREPER, THE committee of EU permanent representatives, finalised a text on fees for the new European Medicines Evaluation Agency on Wednesday, ensuring that the agency can soon be up and running. [Reuters, 263 words, 900407#] >> IN CANADA, a coalition of five organizations representing the drug industry, including the Pharmaceutical Manufacturers Association of Canada and the Canadian Drug manufacturers Association, has called for a separate government agency to be set up ... [Marketletter, 355 words, 901176#] >> THE FRENCH PHARMACEUTICALS market is an exception in global terms because in other drug markets such as the USA and Germany, generics represent around 45% of the total and 35% respectively; while generics represent only 3.3% of the French pharmaceuticals market. [Marketletter, 622 words, 900230#] >> SALES OF PHARMACEUTICALS through retail pharmacies in the nine leading world markets totaled $99.76 billion in the first ten months of 1994, an increase of 5% over the like, year-earlier period, according to new figures published by IMS International. [Marketletter, 542 words, 900023#] ________________________________________________________________ MEDICAL INFORMATION SYSTEMS >> CONSUMERS COULD CHOOSE their doctor and clinic via computer modem under a plan outlined Tuesday by HealthPartners, one of Minnesota's largest health maintenance organizations. [Saint Paul Pioneer Press, 319 words, 900511#] >> STRATEGIES TO MINIMIZE the problem of drug misadventures were the result of a meeting convened by the American Society of Hospital Pharmacists, the American Medical Association and the American Nurses Association and held in Chantilly, Virginia. [Marketletter, 149 words, 901140#] ===== = For more information about the HEADS UP news filter and a free-of-charge = trial of the service please send a message to Amy Putnam at: = amyp@individual.com ===== === end of als 169 ===