Date: Thu, 15 Dec 94 00:08:50 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#159 ALS-ON-LINE (retransmission) =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#159, 14 December 1994) == == == == ------ 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 == == 430+ 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 - basics 2 .. re: Good Morning America 3 .. French Newsletter Summary 4 .. IVIG Treatment 5 .. Bulbar ALS 6 .. Query: SOD1 ENZYME 7 .. Amgen/Synergen (1) ===== Editorial - basics ========== A lot of new people have come on line. Time to review. It is important that everyone in the ALS e-mail network know about the following: (A) -- an organization Lynn Klein, VP Patient Services ALS Association 21021 Ventura Boulevard, Suite 321 Woodland Hills CA 91364 TEL 818-340-7500 FAX 818-340-2060 TEL 800-782-4747 (Patient Hot Line) They publish a newsletter called LINK. It should be considered as required reading. To find out about ALS support groups in your area, ask for Ms. Doby Hall. (B) -- a book AMYOTROPHIC LATERAL SCLEROSIS: A COMPREHENSIVE GUIDE TO MANAGEMENT. By Hiroshi Mitsumoto and Forbes Norris 1994, 342 pages, paperback, $39.95 Demos Publications; 386 Park Ave S., Suite 201; New York NY 10016 TEL 212-683-0072 rgds,bro (2) ===== re: Good Morning America ========== Date : Mon, 12 Dec 1994 21:52:20 -0500 >From : BillB67399@aol.com Subject: Re: ALSD#154 ALS-ON-LINE Sorry for the lateness of this notice, but Good Morning America has re-scheduled the segment on Dan Flynn of Boston from Dec. 13 to Dec. 20. Of course, this could change unexpectedly as well, but I hope not. I hope this change doesn't cause too much inconvenience and disappointment for those who tune in on Dec. 13. Regards, Debra Bulkeley (3) ===== French Newsletter Summary. ========== >From : cdavid@uwspmail.uwsp.edu Date : Tue Dec 13 08:36:49 CST 1994 Subject: French Newsletter Summary. French ALS Association Newletter #23, October 1994 - Summary of Highlights Translator's Notes: i) The content of the newsletter was aimed at members and branches of the French "Association for Research on Amyotrophic Lateral Sclerosis" (ARS); ii) "SLA" below is the French equivalent of the English "ALS"; iii) "MNDA" below refers to the British "Motor Neurone Disease Association"; and iv) I am NOT a professional translator, neither was this (rapidly prepared) summary checked by a professional. There may be errors of meaning or interpretation below, and I do apologize in advance for these (I believe and hope that they are minor). 1) ALS Center at Saletriere: Two revised technical fact sheets have been developed that deal simultaneously with the problems of speech therapy and swallowing. One is primarily for use by speech therapists, while the other is aimed at patients. A study at the Laennec Hospital is examining the effects of ALS on the acoustical characteristics of the voice. They hope to develop a solid data base from which they can extract mathematical constants of diagnostic value. 2) The SLA Network: This is a newly formed (September 1994) network that also will function as the Scientific Council of the ARS. Among recently fixed objectives and decisions: - a concerted effort to coordinate and participate in multifocal trials at both national and international levels. This will cut down on travel costs by optimizing the distances. - for clinical evaluation methods, setting up of a common computer information base and standardization of statistical databases. - setting up of a database that will centralize information on both ongoing or planned therapy trials e.g. qualifying criteria. - future near-term themes and discussions will include gastrostomy and tracheostomy (indications and contra-indications for both) 3) The ARS Secretary-General visited the British MNDA's 15th Anniversary Meeting (September 1994). Among her observations: - Peter Cardy, MNDA Director for the past seven years, is leaving the organization. - The problem of assumption of responsibility from the very first visit up to the moment of critical decisions (whether by doctors, caregivers, ...) was a "hot" discussion topic - Doctors representing pharmaceutical laboratories presented information on the current state of research. The British Minister responsible for persons with disabilities was present, and was exposed to "virulent" criticisms from the gathering at times. - The deep frankness (sincerity) with which the English discuss ALS and its consequences with patients was striking, and in France the same might be construed as brutality. However, this frankness is expressed with an immense politeness and ever-present sense of humour. 4) International Meetings: - October 28-29, 1994: 12th International Symposium ["Journees"] on Neuromuscular Pathology in Marseilles. This year the focus is on ALS. - November 7-9, 1994: At Noordwijk, Netherlands - both the 5th International Symposium on ALS and Motor Neurone Diseases and the 2nd General Assembly of the International Alliance of ALS/MND Associations will take place. Program highlights: 4.1) 5th International Symposium - organized in two parallel colloquia: 1st COLLOQUIUM - "Pathogenesis and Treatment of ALS/MND": - numerous presentations; more notable ones include: = R. Rothstein (Baltimore, US) on experimental models = B. Pakkenberg (Copenhagen, Denmark) on new results and new problems in quantitative analysis = T. Munsat (Boston, US) on methodology of therapy trials and the terms discussed during an earlier 1994 international workshop in Pennsylvania. = G. Bensimon (Paris, France) on therapy trials = R. Lindsay (NY, US) on therapeutic potential of neurotrophic factors = R. Brown (Boston, US) on genetic aspects that were discussed at a Cold Spring Harbor Symposium - Some significant advances to be reported on: = transcranial magnetic stimulation as a diagnostic and prognostic tests for ALS = CNTF receptors in the spinal cord and in the human cerebral cortex = rapid detection of SOD-1 mutations = the discovery of a new mutation of SOD-1 with a variable phenotype ... and several others 2nd COLLOQUIUM - "Physical and Psychological Adaptations to ALS/MND": - Preamble included an interesting statement: "Thus, in many countries, the systems and services health and social protection are generally incapable of adapting themselves to the caprices of this disease, and must be advised, assisted--perhaps even sometimes replaced--by specialized associations." - The colloquium is focused on the nature of the changes above, the best means of reducing difficulties and despair, and also ways to achieve the best possible quality of life for both the patient and the care- giver. 4.2) 2nd General Assembly of the International Alliance ... - Discussion sessions will focus principally on therapy trials: = Nov. 9 - information and training for patients and care-givers = Nov. 10 - drug trials; discussion and elaboration on a chart of good practice (scientific, bio-ethical, economic). This chart will appear in a subsequent publication = Nov. 11 - international symposia: review of the 5th and planning of the 6th 5) Workshop on Therapy Trials in ALS (4) ===== IVIG Treatment ========== Date : Tue, 13 Dec 94 23:56:26 PST >From : silver@thebeach.wr.usgs.gov (Stan Silverman) Subject: IVIG Treatment First I'd like to say thanks to all of the contributors to this group. Words of advice, experience, and encouragment have often helped. My request would be of any people with experiences or knowledge of IVIG treatment. I was diagnosed with motor neuron disease in 1990 and have incurred gradual loss of use in both arms since then. Despite lack of evidence of conduction blocks in EMG's and no autoimmune problems evidenced by blood tests, one neurologist believes that such blocks may go undetected and that IVIG treatment would quickly (and expensively) settle the issue. Another neurologist was skeptical of the chances of an "undetected conduction block" and still reclassifies my condition as ALS. If you have any personal experience or opinions concerning IVIG treatment I would be most interested - you can e-mail me directly. Please keep up the good work -- best wishes to all for the holiday season and progress in the new year. Stan Silverman silver@thebeach.wr.usgs.gov (5) ===== Bulbar ALS ========== Date : Wed, 14 Dec 94 16:50:57 CST >From: Woody Bledsoe Bob, I feel that this message should be put on the net. Woody --------------- Date : Mon, 12 Dec 94 09:21:56 EST To : bledsoe@cs.utexas.edu >From: rosen@wadsworth.ph.albany.edu (Daniel Rosen) Woody, The name for bulbar ALS comes from the following. There is an enlargement of the spinal cord at the top of the spine, and this is called the spinal bulb. The neurons from this region of the spinal cord control the muscles of the throat and neck. When these neurons are involved in ALS, it is called "bulbar". Just thought you'd like to know. ________________________ Dan Rosen Wadsworth Center for Laboratories and Research (6) ===== Query: SOD1 ENZYME ========== Date: 14 Dec 94 16:27:42 EST From: RON LEEB <72613.2113@compuserve.com> Subject: Query: SOD1 ENZYME Can a medical researcher answer a question I have regarding the SOD mutation that may be the cause of ALS? Could the SOD1 missense mutation involving the alteration of one or more codons, causing enzyme defects, be the result of ricin's ability to inhibit protein synthesis through inactivation of the 60s ribosomal subunit? I hypothesize that the castorbean's allelopathic neurotoxin, ricin, use in fertilizer: "The residue remaining after the oil has been extracted from the seed is known as castor pomace, and is used widely as organic fertilizer...Because a poisonous constituent, ricin, remains in the pomace after extraction of the oil, the pomace cannot be used for livestock feed. Processes are known for destroying the toxic nature of ricin, but are not presently economical for commercial use" (USDA, Texas A & M: Castorbeans in Texas), is one of the venues where people come into contact with ricin. Thank You Ronald Leeb (7) ===== Amgen/Synergen ========== THOUSAND OAKS, Calif., Dec 14 (Reuter) - Amgen Inc said the Federal Trade Commission (FTC) has granted early termination of the waiting period required by the Hart-Scott-Rodino Antitrust Improvements Act, for Amgen's pending tender offer for Synergen Inc . < parts deleted because of copyright > "The early clearance by the FTC enables us to continue to move toward the expected completion of the pending tender offer on Dec. 21st," said Gordon Binder, Amgen's chairman and chief executive. REUTER === end of als 159 ===