Date: Thu, 16 Feb 95 01:17:39 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#174 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#174, 15 February 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 == == 480+ 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 .. Meeting at Rhone-Poulenc Rorer Regarding Riluzole 2 .. CNTF Trials 3 .. CNTF 4 .. excerpts from ALS Association Memo on CNTF announcement 5 .. re: aloe vera 6 .. thank you 7 .. Tale of Courage 8 .. Neuroscience via WWW 9 .. GDNF 10 . PHARMACEUTICAL BIOTECHNOLOGY 11 . New Biotechnology Discussion List (1) ===== Meeting at Rhone-Poulenc Rorer Regarding Riluzole ========== Date : Mon, 13 Feb 1995 23:28:38 -0600 (CST) >From : HEINET@wartburg.edu Subject: Meeting at Rhone-Poulenc Rorer Regarding Riluzole On Monday, February 13, 1995, from 10am to 2pm four ALS patients (Jack Norton of Minnesota, Susan Pinson of Georgia, Marita Gladys(sp?) of Pennsylvania and I) met with executives of Rhone-Poulenc Rorer at the company's headquarters in suburban Philadelphia to discuss procedures for extended access to Riluzole when the present clinical trial results are released. Ellyn Phillips, chair of the ALS Association's Advocacy Committee, was also in attendance. RPR plans to release results of its current clinical trial of Riluzole of April 4. At present, evaluation of data is incomplete and the company is not sure whether the drug will demonstrate efficacy. At the time of release of trial results, assuming those results are positive, the company hopes to be able to make a limited quantity of the drug available to ALS patients in the US and throughout the world. Details of the extended access procedure will need to be worked out. RPR will not charge for the drug in this stage, which is a very favorable development, since FDA regulations would allow the company to charge a price sufficient to recover its costs. The four patient reps were pleased at the opportunity to explore various possible procedures for expanded access. We believe RPR will devise a procedure that is fair and will reach as many patients as is feasible, given a limited supply of Riluzole. It is an exciting development that RPR is planning ahead for expanded access, even though it is not sure the drug will demonstrate efficacy, which of course is essential. We can look forward with anticipation to the April 4 announcement. Ted Heine in Waverly, Iowa (2) ===== CNTF Trials ========== Date : Tue, 14 Feb 1995 07:39:59 -0700 >From : gnicholas@lanl.gov (Grant Nicholas) Subject: CNTF Trials The members of the Albuquerque contingent of the Synergen-Syntex clinical trials with the CNTF growth factor have been informed that those trials have been terminated. Participants have been informed that they should stop the daily injections of the supplied material, and that they will receive a final strength test at their next scheduled appointment. This follows the purchase of that company by Amgen (I think), the stated purpose of which was to get the rights to GNDF (Glial Neurotrophic Growth Factor). So it would seem that this action following Regeneron's similar decision means that CNTF is old news, and out of the running as a possible inhibitor of ALS progreession. I have not heard of any replacemnt clinical trails using GNDF. Wish there was some good news. Kindest Regards, Grant ========================================================================= ===== Grant L. Nicholas Voice: 505/665-3212===== ===== Los Alamos National Laboratory Fax: 505/665-4657===== ===== NIS-4 Space Science Engineering gnicholas@lanl.gov===== ===== CIS:74000,1616 ===== ===== AOL:GrantN6077 ===== ========================================================================= (3) ===== CNTF ========== HEALTH NEWS DAILY Tuesday February 14, 1995 INDUSTRY NEWS: Syntex/Synergen dropping trials of rhCNTF. Syntex/Synergen dropping trials of rhCNTF: Neuroscience joint venture reports Feb. 13 that it is discontinuing clinical trials of recombinant human ciliary neurotrophic factor (rhCNTF) for treating amyotrophic lateral sclerosis (Lou Gehrig's disease), as the Phase III, placebo-controlled, double-blind study of 570 mild-to-moderately ill ALS patients "found that rhCNTF did not slow the progression of muscle weakness over a six-month period in patients receiving the drug compared with patients receiving placebo." Preliminary safety data from the 29 center study "indicate that certain side effects were observed at a greater rate in the groups receiving rhCNTF." In June 1994, Regeneron discontinued its Phase III trials of CNTF for ALS because of side effects and questions about efficacy. < rest of article deleted > (4) ===== excerpts from ALS Association Memorandum on CNTF announcement. ========== ALS Association; 21021 Ventura Blvd., Suite 321; Woodland Hills, CA 91364. TEL 818-340-7500, FAX 818-340-2060. Here is some information from Lynn Klein's Memo of February 13th. A presentation of the complete data from this study is scheduled to take place at the annual meeting of the American Academy of Neurology in Seattle, Washington on May 6-13. The Syntex/Synergen Neuroscience Joint Venture has set up a CNTF information hotline at 1-800-939-6003. A press release and other information is availble from: SYNTEX (USA) Inc.; 3401 Hillview Avenue; Palo Alto, CA 94303 TEL 415-855-5050 SYNERGEN, Inc.; 1885 33rd Street; Boulder, CO 80301 TEL 303-938-6200 "The ALS Association, along with ALS patients and families and members of the scientific community is understanably disappointed in the outcome of the trial. However, it is important to remember that the negative results of CNTF does not mean the end of research in the area of neurotrophic factors. BDNF and IGF-1 and other neurotrophic factors, are completely different in molecular structure and neurobiological properties. The current clinical trials are very important directions for the entire field of neurotrophic factors." (5) ===== re: aloe vera ========== Date : Tue, 14 Feb 95 16:41:38 CST >From : "Paula Roper" Subject: re: aloe vera A few days back someone wrote about the use of aloe vera for als. I was wondering about the dosage and what sort of effect it might have? Paula (6) ===== thank you ========== Date : Sat, 11 Feb 1995 19:03:52 -0600 (CST) >From : Linda Smith Subject: ALS digest I have been subscribing to the ALS digest for several months in order to gather and pass on information to my uncle, who was diagnosed with ALS in fall 1992 and passed away in November 1994. At this point I would like to unsubscribe from the distribution list, but I want to commend everyone for all your efforts in using the network to share so much information on ALS as well as experiences in coping with the disease. As a librarian I am very interested in ways that those in need of information can gain access to it. My uncle was very grateful for all the information that I was able to provide thanks to the contributors to this digest. Linda Smith lcsmith@uiuc.edu (7) ===== Tale of Courage ========== Source: The Windsor Star 02/04/95 Byline: compiled by Ted Shaw Column: SHORT STORIES < parts deleted > Tale of Courage Dennis Kaye calls himself ``the incredible shrinking man,'' inspired by the 1950s science-fiction movie about a man who gets progressively smaller until he wastes away to nothing. The image is apt because Kaye suffers from Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig's Disease, a fatal and untreatable disorder of the brain's motor control. Kaye came to national prominence five years ago when he wrote a moving letter to Peter Gzowski, the CBC-Radio host of Morningside. Since then, Kaye's condition has worsened but his spirits thrive inside his broken body. He tells his story in Laugh, I Thought I'd Die: My Life with ALS, just published in paperback at $12.99 by Penguin. Kaye composed his correspondence with Gzowski first with a pen clenched between his teeth -- he can't use his limbs -- and now by typing one key at a time on a laptop computer. In 1985, the active Kaye, a father of two girls, was told he had ALS and was given three years to live. Nearly a decade later, he has become one of the more prominent spokesmen about ALS. Laugh, I Thought I'd Die, as its title suggests, is written with a sense of humor and focuses on Kaye's struggles and the obstacles facing other sufferers of the disease. In the end, Kaye's book is an uplifting article of faith in one's inner strength and instincts for survival. < rest of article deleted > (8) ===== Neurosciences via WWW ========== Date : Fri, 3 Feb 1995 16:52:14 ITA Sender : "NEWNIR-L: New NIR services and OPAC Announcements/Descriptions" : >From : Fabio Metitieri Subject: Neurosciences via WWW Announcing Neurosciences on the Internet ============================================= There are many neuroscience resources to explore on the Internet through World Wide Web browsers and other tools. The first section of this page lists sites that are ideal starting points for this exploration by virtue of their composition and/or numerous links. Subsequent sections list some biological and medical resource sites and World Wide Web sites invaluable for any type of information retrieval. -- Neil A. Busis, M.D. nab@telerama.lm.com http://www.lm.com/~nab (9) ===== GDNF ========== Source: THE WASHINGTON POST 02/08/95 Title : What GDNF Can Do Column: Letters to the Editor Rick Weiss's Jan. 26 story on the findings that a growth factor known as GDNF may hold promise for treatment of Parkinson's disease and Lou Gehrig's disease undoubtedly offered gratifying news to many Post readers. In fact, as reported in the scientific journal Nature Jan. 26, a study funded by the Muscular Dystrophy Association (MDA) shows that GDNF may be effective not only as a therapy for amyotrophic lateral sclerosis (Lou Gehrig's disease) but also for spinal muscular atrophy, one form of which is the leading genetic cause of death in infants. Both are motor neuron diseases covered by MDA's program of research and services. MDA's six amyotrophic lateral sclerosis (ALS) research centers across the country are involved in clinical trials of other growth factors as potential ALS therapies, and we're moving to see if GDNF can also be tested in people affected by these conditions. < parts deleted > ROBERT ROSS Senior Vice President and Executive Director Muscular Dystrophy Association Tucson MDA's toll-free information lifeline is at 1-800-572-1717. (10) ===== PHARMACEUTICAL BIOTECHNOLOGY ========== Date : Wed, 15 Feb 1995 10:08:38 +0100 Sender : Human Molecular Genetics >From : Arthur Bergen Subject: Vandenberghe / CALL FOR BIOTECHNOLOGY PAPERS LAST CALL FOR PAPERS ************************************************************************** *** The 2nd International Pharmaceutical Biotechnology Conference *** ************************************************************************** APRIL, 23 - 27 1995 GHENT, BELGIUM, EUROPE Main topics : Gene Therapy, Vaccines and Monoclonal Antibodies, Drug Delivery Systems, Modification of Plants, Drug Design, Biotechnology in the Treatment of Cancer, Pharmacoeconomics, Human Genome Project, ...... < parts deleted > PLEASE SEND MAIL DIRECTLY TO ME ! ################################################################## ##### Dirk Vandenberghe ##### ##### Laboratory Pharmaceutical Biotechnology ##### ##### University of Ghent ##### ##### Harelbekestraat 72 ##### ##### B-9000 GENT (BELGIUM) ##### ##### Tel.: 32 9 2218951 Fax: 32 9 2206688 ##### ##### E-mail: Dirk.Vandenberghe@rug.ac.be ##### ################################################################## (11) ===== New Biotechnology Discussion List ========== Date : Sun, 12 Feb 1995 08:53:21 -0800 Sender : "EMBNet (European Molecular Biology Network) Distribution List" >From : Stefan Gruenwald Subject: New Biotechnology Discussion List A novel international Biotechnology Discussion List (BIZ-BIOTECH) has been created. Subscription address: listserv@netcom.com Biz-biotech owner address: grunwald@netcom.com Posting address: biz-biotech@netcom.com < parts deleted > One of the major goals the of BIZ-BIOTECH list is to bring together scientist and business professionals from industry and academia that work on biomedical and biotechnical projects. To share information on ideas, projects, resources etc., creating a world-wide information and communication-forum around BIOTECHNOLOGY and its business applications and opportunities. < parts deleted > BIZ-BIOTECH is currently an open, unmoderated list. Any postings are automatically accepted. The list owner is Stefan Gruenwald (e-mail: grunwald@netcom.com). Subscribers are encouraged to support BIZ-BIOTECH actively within their own organizations and personal or professional net-works. The larger BIZ-BIOTECH becomes, the more useful it will be to all its subscribers. Commercial messages which are of general interest to the subscribers are allowed on BIZ-BIOTECH. For further information about BIZ-BIOTECH, please send an e-mail to Stefan Gruenwald (grunwald@netcom.com) BIZ-BIOTECH listowner === end of als 174 ===