=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#53, 10 AUGUST 1993) == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == == == All interested people may "broadcast" messages to == == ALS Digest subscribers by sending to: == == als@huey.met.fsu.edu == == == =============================================================== (1) ===== building the ALS e-mail network ========== (a)----- Date : Sun, 08 Aug 93 01:19:01 -0400 >From : "PATHOLOGY & LAB. MEDICINE" Subject: RE: amyotrophic lateral sclerosis Bob, please add my email address to the distribution list for the ALS newsletter. Thanks. Gregg Wells, MD, PhD Division of Neuropathology Department of Pathology and Laboratory Medicine University of Pennsylvania Philadelphia, PA 19104-4283 Email: pathology@a1.mscf.upenn.edu (b)----- Date : 06 Aug 93 15:36:56 EDT >From: Greg Butterick <70731.1277@CompuServe.COM> Bob, I just wanted to thank you for the sample issues of the ALS Digest you sent me. Issue #43 gave me a new contact in my area. I really appreciate this. Sincerely. Greg Butterick CINI (Communication Independence for the Neurologically Impaired) 250 Mercer Street Suite B1608 New York, NY 10012 (c)----- Date : Wed, 28 Jul 93 11:40:00 -0700 >From : kchen@gene.com (Karen Chen) Subject: ALS newsletter I was wondering if I could be placed on the e-mailing list for receiving ALS news (i've been getting it forwarded from Michele Lee). I am currently a post-doc at Genentech and working on animal models of neurodegenerative diseases and neurotrophins. I'm in the Neuroscience dept. and I just told our director, Franz Hefti about your network and so he'll be asking to be put on the e-mail list also. My address is kchen@genie.gene.com and if you ever want to call us here (we are actively working on motor neuron degeneration and neurotrophins in the dept) my phone number is (415)225-5717 Karen Chen (d)----- Date : Wed, 28 Jul 93 12:21:22 -0700 >From : hefti@gene.com (Franz Hefti) Subject: ALS digest I wish to subscribe to ALS digest. Franz Hefti, Ph.D. Director, Department of Neuroscience Genentech Inc. South San Francisco, CA 94080 hefti@gene.com thanks. (e)----- Date : Fri, 30 Jul 93 10:08:31 PDT >From : scohn@amgen.com (Sherrill Cohn) Subject: ALS Digest I would like to subscribe to the ALS Digest. Would you please add me to your list. Thanks, Sherrill Cohn (2) ===== re: back issues ========== > >Date : Tue, 3 Aug 1993 12:16:38 +0200 >From : kenneth@eunet.es (Alejandro Cervantes) >Subject: Questions about the ALS Digest > >I would like to know if there are Archives of this digest, >accesible by anonymous FTP. > >Thanks, Alejandro Cervantes (kenneth@yago.eunet.es) > Most of the back issues of ALS DIGEST can be collected via anonymous FTP at mailer.fsu.edu ftp/pub/als In the near future all issues will be posted there. Please let me know if you have any problems. Regards, Bob Broedel ALS INTEREST GROUP (3) ===== from another list, but about ALS ========== (a)----- Date : Wed, 4 Aug 1993 09:47:28 EDT Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3154 To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send electronic mail to Bill McGarry at any of the following addresses: UUCP: uunet!bunker!wtm INTERNET: wtm@bunker.shel.isc-br.com BITNET: l-hcap@ndsuvm1.bitnet Fidonet: The Handicap News BBS (141/420) 1-203-337-1607 (300/1200/2400 baud, 24 hours) Compuserve: 73170,1064 Bill McGarry (Moderator) (203) 337-1518 Subject: Quest: Als, Neck braces,Muscle Attrpe >From : gibbon@natchez.bu.edu (Peter Kahn) Organization: Boston University Hello, my father has ALS (Lou Gerig's disease) and he is having some neck problems, and I was hoping someone out there had some information on possible things to try. He has lost the nerves that control the muscle groups that keep his head up. He has developed a bad slouching situation, wtih his head leaning deep on his chest, and causing pain in his back and neck. I was wondering if any one knew of any neck braces or large rigs that would lock the head and chest into alignment together. +----------+ | head | | | |------| strap around uppper chest | | | |------| strap for lower back Something like this might keep his head up, or even if this type of thing built into a wheel chair (he currently has a Quicky chair). If anyone knows of any product they even think might work in this situation I would really appreciate it if you could send me a message. Thank you. ----- Peter Kahn ----- ----- peterk@crsa.bu.edu ----- -------------------------------- When the lizard eats pepper, it is the frog that sweats (b)----- Subject: Information About Coping? >From : gibbon@natchez.bu.edu (Peter Kahn) Organization: Boston University Hello, as my parents and I have been dealing with my father's ALS and the constant changing situation it has caused we have run into a sea of missinformation and have found many people telling us that something couldn't be done, only to wind up seeing it somewhere else or figuring out a way to jurry rig it. I was wondering if any one had thought of contacting some of the advocacy groups (such as MDA and others) and either informing them of the net or maybe talking with them about pooling information resources into libraries, and contact sheets so that when people are trying to work out a transport problem they are not limited to chatting with just the manufacturer's of the wheel chair or the van, but so that they have access to other groups and other people who may have been through this problem and have some advice. It seems to me that all the information that we gather is being lost and that's just not right. If anyone knows of any groups or any people that it would be good for me to talk to please send me some email. I think I'm going to try to see what I can do with MDA for starters. Thank you for you help. ----- Peter Kahn ----- ----- peterk@crsa.bu.edu ----- -------------------------------- When the lizard eats pepper, it is the frog that sweats (4) ===== a declaration ========== Date : Mon, 26 Jul 1993 16:19:43 -0400 >From : Gopher Anonymous User Subject: Declaration_Against_cDNA_Patenting CNRS UPR 420 Laboratoire GENETHON Genetique Moleculaire et Genexpress Biologie du Developpement 1, rue de l'Internationale 7, rue Guy Mocquet BP 8 91002 EVRY cedex 94801 VILLEJUIF cedex FRANCE FRANCE tel. 33 1 69 47 29 65 tel. 33 1 49 58 11 11 fax.33 1 60 77 86 98 fax. 33 1 45 58 11 22 29 January 1993 Dear Colleague, The first part of the catalog of human gene transcripts assembled by the Genexpress cDNA sequencing program (GENETHON, France) has been presented to the French Academie des Sciences by its Secretaire General, Pr. Francois GROS, on 6 July 1992. All these partial cDNA sequences which correspond to unique, previously unidentified sequences are deposited in the EMBL Data Library as they are isolated, and are available for public access as a service to the world scientific community. There are presently 2723 such entries in the EMBL sequence database. In addition, the existing catalog of cDNA sequences was deposited in the hands of UNESCO's Director General, Dr. Federico Mayor, during an official ceremony on 28 October 1992. On this occasion, I expressed the concern of a large number of scientists world-wide concerning attempts to control basic knowledge, and put forward a Declaration, the text of which is attached. All those who wish to express their support of this Declaration are invited to add their name, address and signature to the Declaration and return it to me. Charles AUFFRAY Directeur de Recherche au CNRS Directeur Scientifique Genexpress Laboratoire GENETHON ========================================================================= Declaration to UNESCO - October 28th, 1992 We declare that all basic information derived from the study of the genomes of human, animals, plants and other model organisms (sequences, physical and genetic maps) are part of our human scientific heritage and should therefore be made accessible to the entire scientific community in international electronic databases as soon as possible after their description. We invite all those who hold such data to follow this recommendation and our institutions and governments to enforce and implement it, by law and international agreement if necessary. UNESCO is requested to act in order to protect these data against the dangers of monopolization, for the benefit of mankind. Name: Address: Signature: (5) ===== re: CNTF Phase II clinical trials ========== Ed: CNTF is currently in Phase III RTf 08/09 1012 RegeneronCNTF trial impact not significant TARRYTOWN, N.Y., Aug 9 (Reuter) - Regeneron Pharmaceuticals Inc said results of Phase II clinical trials of ciliary neurotrophic factor (CNTF) to treat amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease, indicate that CNTF had no statistically significant impact on disease progression as compared to placebo-treated patients. The trial did find CNTF to be safe and well-tolerated for up to 20 weeks of administration, but for doses of 0.5 to 30 micrograms per kilogram three times a week. Comparisons of rates of deterioration in muscle strength and pulmonary function between patients treated with 30 micrograms per kilogram of CNTF and placebo, however, ranged in significant level between p=0.08 and p=0.20. Phase II clinical trials also indicate that anti-CNTF antibodies were detected in all patients treated at the dose of three micrograms per kilo- gram and above. The company added that these trial results, slated to be presented at the meeting of the World Congress of Neurology in Vancouver in early September, support the need for a controlled trial of CNTF. REUTER == end of als 53 ==