=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#98, 29 April 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. Currently there are == == 230+ 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) .. new subscriber seeks contacts & info (2) .. seeking ALS experts from the BioMechanics Listserv (3) .. re: Double-blind studies (4) .. Alzheimer #1 (5) .. Alzheimer #2 (6) .. Alzheimer #3 (7) .. Experimental Biology 94 (8) .. CNTF (9) .. Duchess of York visits Capitol Hill (10) . Riluzole (1) ===== new subscriber seeks contacts & info ========== Subject: Subscribe to ALS Date : Wed, 27 Apr 94 16:51:03 PDT >From : Don Bailey I would like information on how to subscribe to the "ALS Digest". But first, a brief note. To take advantage of the Information Superhighway, I placed the following on the Internet Sci.med, in behalf of our nephew Tom. To date I have had one response from a gentleman who is not a Doctor but is read on this subject. He refereed us to several articles in the Journal of Neurological Science. I'm afraid we are looking for more than that. Your E-mail address and some of the articles it has shown me appears to be what we are looking for in order to help Tom. Tom, however is not computer literate, so I shall (for the time being) act as the "intermediator." (Original net article follows); ""Just received word that a favorite nephew has Lou Gehrigs disease. (95% chance of correct diagnosis, so say Mayo) What are his chances? Is there a cure? Is any thing happening in the U S and outside the U S that is encouraging? He is like 40+ otherwise very healthy, athletic and kind of in the "Saint" category. No smoke, drink, dope or carousing. We have to say "why him"? What causes this disease? Are there support groups he (we) should know about? I guess what we are saying is, "How can we help this great guy? E-mail response to dsb@cruzio.com"" End of Original message; Tom is a resident of Santa Barbara California. It would be a great help if your mailing list included others in his immediate area. Thank you, Don S. Bailey My E-mail address is: dsb@cruzio.com -- (2) ===== seeking ALS experts from the BioMechanics Listserv ========== Here is the question ... --------------------------------------------------------------- Date : Thu, 14 Apr 1994 01:30:07 EDT Sender : Biomechanics and Movement Science listserver : >From : Bob Broedel Subject: amyotrophic lateral sclerosis (ALS) --------------------------------------------------------------- Dear BioMechanic Folk! I am always interested in knowing about experts who are involved with problems related to amyotrophic lateral sclerosis (ALS). Just now I am seeking contact with institutions who can provide advice regarding neck braces, feeding harnesses, etc. for ALS patients. Thank you in advance for any assistance that may be given to this request for information. rgds,bro ======================= ========================== Bob Broedel, Engineer = Strike Out ALS ! = Meteorology Department = (Lou Gehrig's Disease) = FLORIDA STATE UNIVERSITY = List Owner: = Tallahassee, Florida 32306-3034 USA = ALS INTEREST GROUP = ================================================================ TEL: 904-644-6840 (work, answering machine), 904-576-4906 (home) FAX: 904-644-9642 ATTN:BROEDEL E-mail: bro@huey.met.fsu.edu TELEX (AT&T EasyLink): 5106014520 (TALLY-KRAS FL) ================================================================ Response #1 ------------------------ To : bro@HUEY.MET.FSU.EDU >From : BECKETT@bim.msu.edu Date : 14 Apr 94 09:12:49 EDT Subject: Re: amyotrophic lateral sclerosis (ALS) Check with one of our professors, Dr. Bob Hubbard, about his "HAL" support system. It is a head/neck support system and has been applied in the areas you mentioned. His Email address is hubbard@bim.msu.edu his phone is 517-353-5013 ********************************************************************** Clifford L. Beckett MAIL ID: beckett@bim.msu.edu System Designer Material Science and Mechanics Department Michigan State University VOICE: (517) 355-4659 E. Lansing, MI 48824 FAX: (517) 353-0789 ********************************************************************** Response #2 ------------------------ Date : Thu, 14 Apr 1994 12:56:54 -0700 (PDT) >From : Carolyn Anglin Subject: Re: amyotrophic lateral sclerosis (ALS) Hi - I can't be of immediate assistance, but a team of us in Mechanical Engineering at the University of British Columbia are developing a "powered upper-limb orthosis", i.e. a motorized arm that would be worn on the outside of someone's arm who has severe upper-limb weakness. The user controls where the arm moves and opening and closing the hand. It is intended for eating, reaching for objects, washing the face etc. We have just completed the initial prototype design and it is currently being manufactured. It is therefore far from being a commercial device, but I thought you might be interested to know that such work was being undertaken. People with ALS, polio and muscular dystrophy are our primary focus for initial users. Best of luck, Carolyn Anglin Dept. of Mechanical Engineering University of British Columbia carang@unixg.ubc.ca Response #3 ------------------------ Date : Wed, 27 Apr 94 12:10:58 EDT >From : Rungun Ramanathan Subject: Re: amyotrophic lateral sclerosis (ALS) I am working on an orthosis for people with ALS and muscular dystrophy and atrophy. I am interested in getting a copy of the replies that you got for the question that you posed. thanks in advance rungun ==================================================================== \__ ____ \__ Name : Ranganathan Ramanathan /__ / / / \ /___/ / / / \ S-Mail : ASEL, AI DuPont Institute / /__/ / / ___/ /__/ / / PO Box 269, Wilmington ramanath@asel.udel.edu DE 19899 sg92di9e@dunx1.ocs.drexel.edu Phone : (302) 651 6869; (215) 651 2376 (3) ===== re: Double-blind studies ========== Date : Mon, 25 Apr 1994 16:13:23 -0400 (EDT) >From : Mark Lewis Subject: Re: Double-blind studies To : Phil Walsh Cc : bro@huey.met.fsu.edu Dear Phil - Thank you for your note. As you say, there are good points on each side of this issue, and I don't believe for an moment that securing a guaranteed profit margin is the overall guiding principle of the pharmaceutical industry (although I'm not naive enough to believe that the profit factor isn't there, either). The thalidimide tragedy of the early '60s has made pharmaceutical companies and government bodies regulating the drug market overly cautious, and knowing the possible side effects along with the benefits of a drug just makes good sense. However, for many people with life-threatening diseases, the possibility of a longer life outweighs any fears of possible long term side effects. It is my opinion that once a drug passes a certain level of testing (ie., when scientists are sure enough of its safety that it is ready to go to double blind testing), that it should be made readily available to those patients who fall outside the control group parameters of the double blind study. Pharmaceutical companies would of course argue that this would make it more difficult to conduct such studies, since at any point in the study the patient involved might opt out, preferring to know that they are actually receiving the drug to the chance that they may be taking just a placebo. For my friend Susan, there is no dilemma here - if the double blind method is at risk, better to find a new way of testing the drug than to make those for whom any drug would mean renewed hope and longer life wait for the two or three years it would take to run the study - especially when many ALS patients don't have two or three years to wait. The other thing that upsets Susan, which I didn't bring up in my initial letter to Bob, is the secrecy that surrounds the development of these drugs. Why aren't scientists sharing more of their findings, or pharmaceutical companies pooling their resourses and collaborating on developing new drugs for ALS, AIDS, et al? The cynical answer is, of course, the threat of patent theft and lost profits. Here in Canada, where there is a tradition of government intervention in social issues (universal health care, etc.), emphasis has been placed on trying to make private enterprise more responsible to society at large - with varying degrees of success. Recently, because of rising deficits and other pressures being brought to bear on the government, private enterprise has been gaining the upper hand, and is now often dictating government policy. For Susan, who has been used to working within the older government/capitalist dynamic, this is another growing source of aggravation. How do we find solutions to these problems? Information sources and forums for debate like the ALS Digest are a good start. Impassioned people fighting the good fight for those who can't do it themselves, motivated by their love and a knowledge of what's right. We can only hope that our efforts are enough to overcome profit margins and any other obstacles that get in the way of a cure. Something inside me thinks we can. All my best to you and your family. Sincerely, Mark Lewis (4) ===== Alzheimer #1 ========== Topic 1132 "The Heredity Factor" - Alzheimer bionet.neuroscience 2:12 pm Apr 18, 1994 >From: ab341@FreeNet.Carleton.CA "THE HEREDITY FACTOR" A Presentation at the Annual General Meeting of the Alzheimer Society of Ottawa-Carleton Speaker: Dr. Denis Gauvreau, Scientific Director, Projet Image/Recherche Alzheimer Centre de recherche dur Centre Hospitalier Cote-des-Neiges, Montreal Date: Monday, May 30, 19994 Time: 11:00 a.m. - 1:30 p.m. Location: Hellenic Banquet Centre, 1315 Prince of Wales (Free parking) Cost: $10.00 per person, includes light lunch Please register by Friday, May 13, 1994. For more information please call (613) 722-1424. -- Nadia Diakun-Thibault, Ph.D.(ABD), B.Sc ab341@FreeNet.Carleton.Ca =+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+= 250,000 Canadians have Alzheimer Disease. By 2010, the number will double. Alzheimer Society of Ottawa-Carleton (613) 722-1424. (5) ===== Alzheimer #2 ========== Date : Thu, 14 Apr 1994 11:01:13 -0500 Sender : International Discussion on Health Research : >From : Kathy Koepke Subject: new ALZHEIMER network ANNOUNCING A NEW ALZHEIMER NETWORK/DISCUSSION GROUP ALZHEIMER on majordomo@wubios.wustl.edu ALZHEIMER is an email discussion group for patients, professional and family caregivers, researchers, public policy makers, students and anyone with an interest in Alzheimer's or related dementing disorders in older adults. ALZHEIMER is intended to provide interested individuals from various perspectives an opportunity to share questions, answers, suggestions and tips. Likely topics include: * What characteristics of a nursing home are most important to look for when placing a patient with Alzheimer's disease (AD)? * What drugs are currently available for the treatment of AD and do they work? * Tips on caring for an AD patient. * What tests are done to diagnose AD or the likelihood of developing AD? * How does AD differ from "senility"? * Is a personality change normal with advanced aging? Does AD cause abnormal behaviors? * Does a caregiver need care too? * Conference postings ALZHEIMER is an open list, i.e., anyone with an Internet or Bitnet connection can subscribe. The list is monitored, but not censored; no commercial advertising, please. While there are healthcare providers who subscribe to the list, it should NOT be used to obtain remote diagnosis and/or treatment. To subscribe, send email to: majordomo@wubios.wustl.edu and in the BODY of the message, send the command: subscribe ALZHEIMER (no name necessary) ALZHEIMER is an educational service sponsored by the Washington University Alzheimer's Disease Research Center (ADRC) in St. Louis, Missouri and supported by a grant from the National Institute on Aging (NIA, AG05681). Opinions expressed are not necessarily those of the ADRC or NIA. Send your questions, comments and ideas to: ALZHEIMER-owner@wubios.wustl.edu Washington Univ. Sch. of Med. Alzheimer's Disease Research Center 660 South Euclid Ave, Campus Box 8111-ADRC Saint Louis, MO 63110-1093 FAX: 314/362-4763 VOICE: 314/362-2881 (6) ===== Alzheimer #3 ========== Date : Fri, 22 Apr 1994 07:35:14 -0700 Sender : NURSENET - A Global Forum for Nursing Issues : >From : Maryjo Bruce Subject: Alzheimer's I am writing a book about Alzheimer's caregivers. If you know anyone who would be interested in sharing their experiences, please have them contact: Mary Jo Bruce POB 22053 Texas Woman's Univ Station Denton, TX 76204 (7) ===== Experimental Biology 94 ========== KNIGHT-RIDDER/TRIBUNE BUSINESS NEWS (Thursday April 28, 1994) BIOMEDICINE FAIR SUGGESTS GENETIC ENGINEERING IS REVOLUTIONIZING MEDICINE By Jeff Rowe, The Orange County Register, Calif. Knight-Ridder/Tribune Business News ANAHEIM, Calif.--Apr. 28--"Jurassic Park" might be a possibility after all. When the movie about dinosaurs created by genetic engineering came out last year, scientists said it was a leap of science into fiction. Now, just a year later, such dramatic breakthoughs may not be that farfetched. From space medicine to cancer treatments, the latest in biological research is on show in Orange County this week at Experimental Biology '94 at the Anaheim Convention Center. Biomedicine is clearly a growth industry, in which the United States holds about half of the world's $70 billion market, according to the Washington-based Health Industry Manufacturers Assn. "Medicine as we know it soon will be completely outdated," said Frederick Aladjem, a professor emeritus of biophysics at the University of Southern California. One of those companies stretching the bounds of science is Irvine-based Advanced Gene Computing Technologies Inc., maker of a device that allows researchers to look at gene fragments. In isolating the fragments, scientists then have a chance to develop treatments for specific diseases, such as amyotrophic lateral sclerosis or cystic fibrosis. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Genes are made up of DNA, which ultimately guides the body's functions, including its susceptibility to diseases. At stunning speed, researchers and companies are developing ways to manipulate DNA and thus develop specific treatments for various disorders. Moreover, the new techniques suggest that medicine of the future will be far more "natural" and less chemical then now, with treatments utilizing and enhancing the body's own chemistry to fight disease. (8) ===== CNTF ========== INVESTEXT/BIOTECHNOLOGY (Monday April 25, 1994) HEALTH CARE WORLDWIDE (INDUSTRY REPORT) LEHMAN BROTHERS, INC.: Lerner, T.L., et al Regeneron REGN As we wrote in a note of 1/13/94, we believe Regeneron is solidifying its position as a neuroscience leader with an unusual degree of depth and breadth of high-quality research in the therapy and prevention of nervous system damage and disease. And as we wrote in notes of 1/13/94 and 1/11/94, in our view, the use of neurotrophic (nerve growth) factors for the treatment of neuropathy (nerve damage) and amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease) is a focus of an emerging sector of neuroscience. RECAP OF EVENTS IN THE QUARTER AND FURTHER PROGRESS: ** Regeneron's neurotrophic factor CNTF is in a Phase III clinical trial for the treatment of ALS, which the company expects to be completed in the summer of 1994. In addition: ** The company is studying patients who are continuing to receive CNTF, but who have completed Phase II and Phase III studies of the compound for ALS. ** Regeneron, in collaboration with Amgen (AMGN, 48 1/2, rated 2-M) has an ongoing Phase I clinical trial of BDNF for ALS, which began in the third quarter of 1993. If the drug appears safe in that study, Regeneron expects it will enter a Phase II trial for ALS in 2Q94. Regeneron expects BDNF to enter a second trial for the treatment of a disease other than ALS by the end of 1994. (9) ===== Duchess of York visits Capitol Hill ========== UPn 04/25 1322 Duchess of York visits Capitol Hill WASHINGTON, April 25 (UPI) -- "Fergie," the duchess of York, visited Capitol Hill Monday to attend a luncheon for spouses of members of Congress. The invitation-only luncheon was sponsored by Arkansas Sen. Dale Bumpers' wife, Betty, and was billed as "a luncheon with friends," according to Mrs. Bumpers' office. The former Sarah Ferguson, who did not talk to reporters upon arriving at the Capitol, has been in the United States since Friday and will depart for New York on Wednesday as part of a weeklong visit. The duchess is visiting Washington and New York to show support for a foundation helping to fight Lou Gehrig's disease, amyotrophic lateral sclerosis, a statement issued by Mrs. Bumpers' ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ office said. < rest of copyrighted article deleted> (10) ===== Riluzole ========== COLLEGEVILLE, Pa., and PARIS, April 25 /PRNewswire/ -- Rhone-Poulenc Rorer (NYSE: RPR) announced today reported sales of $871 million and net income of $73.7 million ($.54 per share) for the quarter ended March 31, 1994. As expected, earnings were lower than the previous year's net income of $94.2 million ($.68 per share). NEW PRODUCTS AND STRATEGIC DEVELOPMENTS Several new product developments occurred this quarter including: -- Encouraging response rates for Taxotere in previously treated breast cancer patients and patients with non-small cell lung, ovarian and pancreatic cancer continued to be reported, most recently at the NCI/EORTC international congress in the Netherlands last month. -- The European rollout of Granocyte (for chemotherapy - induced neutropenia) progressed with launches in France, U.K., Germany, the Netherlands and other markets. -- Results of a preliminary study with riluzole published in the New England Journal of Medicine show that this antiglutamate drug is potentially active in Amyotrophic Lateral Sclerosis (or Lou Gehrig's disease) for which there presently is no satisfactory treatment. Further work is necessary to validate these initial findings. A second trial is underway. Rhone-Poulenc Rorer Inc. is a global pharmaceutical company dedicated to the discovery, development, manufacturing and marketing of human pharmaceuticals. The Company reported sales of $4.0 billion and invested more than $550 million in research and development in 1993. To be kept informed about Riluzole, contact: Bob Pearson Public Relations Dept. Rhone-Poulenc Rorer 500 Arcola Road P.O. Box 1200 Collegeville PA 19426-0107 TEL 610-454-3872 FAX 610-454-3813 or call this number: 1-800-RX TRIAL (1-800-798-7425) == end of als 98 ==