=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#36, 26 APR 1993) == == == == To subscribe, to unsubscribe, to request back issues, == == 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 network (continued) ========== (a) ----- Date : Tue, 20 Apr 1993 16:06:38 -0700 (PDT) >From : VBPOL00G@VAX.CSUN.EDU Subject: Regarding ALS Bulletin board I've had ALS going on fourteen years now. I'm presently a student at California State University, Northridge. I'm a novice when it comes to using a computer, but I'm learning fast. I'm interested in the proposed ALS network, and I would like to participate in it. Is there an ALS bulletin board? (b) ----- Date : 21 Apr 1993 13:28:57 -0600 (CST) >From : Terry Maton - Construction Engineering Assistant : Subject: Re: NEW: ALS Interest Group I have a friend who is diagnosed with ALS. I would be interested in this group. Terry Maton - University of Saskatchewan, Saskatoon, Canada INTERNET: terry.maton@usask.ca or maton@fawlty.usask.ca (c) ----- >From : "Jay E. Vinton" Date : Wed, 21 Apr 1993 14:49:35 EDT Subject: als subscription request please add me to your als interest group list. my dad died of als and i work at the national institutes of health in bethesda, maryland, and try to keep up on the current research on the cause and cure for als. thank you, jay vinton - jev@nihcu or jev@cu.nih.gov (d) ----- Date : 21 Apr 1993 18:43:29 -0400 (EDT) >From : Allan Schramm Subject: ALS Interest Group I would like to be included in the interest group...and I hope that you can become a "listserve" List before long. I am a social worker with Hospice...and I have worked with ALS patients in this country and in England (North London Hospice Group, to be precise). My Hospice here is: Catskill Area Hospice in Oneonta, New York. We presently are caring for about 60 patients. There are no ALS patients on our program now. However, about 3 years ago when we were much, much smaller we had three ALS patients at the same time. This was quite unusual, since we were told at the time by a national ALS group that ALS struck one in 100,000 ... and that was about our base population at that time. I still get calls from people wanting referrals, so I would appreciate the opportunity to share and learn with others about ALS. Allan Schramm, Oneonta, NY SCHRAMAN@SNYONEVA.CC.ONEONTA.EDU (e) ----- >From : wtm@sheldev.shel.isc-br.com (Bill McGarry) Subject: Re: NEW: ALS Interest Group Date : Fri, 23 Apr 93 23:40:02 EDT Please add me to the ALS mailing list. I am the moderator of the Handicap Digest and the misc.handicap newsgroup and will post your announcement in there. I also run a ftp site for disability-related information (handicap.afd.olivetti.com) and have a directory for ALS but do not have any files in that directory yet, so if you come across any, please let me know. Address here is: wtm@sheldev.shel.isc-br.com Bill McGarry (203) 926-6187 UUCP : {oliveb, uunet}!bunker!wtm INTERNET: wtm@bunker.shel.isc-br.com BITNET: l-hcap@ndsuvm1.bitnet Fidonet : The Handicap News BBS (1:141/420) 1-203-926-6168 : (300 to 14400 baud, 24 hours) NVTel : BillSysop Compuserve: 73170,1064 (2) ===== Another report about SOD-1 ========== TI Lou Gehrig's gene discovered. SO Biotechnology-Business-News, 930312, March 12, 1993. PU Financial Times Business Information, Ltd. AV Subscription: 398 British Pound Sterling per year as of 1/92. Published 24 times/year. Contact Financial Times Business Information, Ltd., Tower House, Southampton St., London WC2E 7HA, UK. Phone (71) 240-9391. FAX (71) 250-7946. BOSTON, MA - Scientists have implicated the gene involved in the incurable Lou Gehrig's disease (LGD), a neurodegenerative disorder that results in muscle wasting, paralysis and death reports the science journal Nature. The gene has turned out to be one of the most familiar genes in bio-medicine and could mean that potential therapies for LGD might be much closer than had been anticipated. However, scientists warn that although they know a great deal about the anti-radical enzyme, called superoxide dismutase, they still have a to figure out how the enzyme is altered in LGS and how the enzyme's defect might be treated. "It is important that people understand, although this is a major breakthrough at this point we do not have a therapy, " said Dr Robert Horvitz a researcher at Massachussetts Institute of Technology. The discovery, made at the Massachussetts General Hospital in collaboration with research institutions in the US and Canada, shows how the disease develops, and suggests a means by which it can be halted or even reversed. (3) ===== RE: CNTF ========== TARRYTOWN, N.Y., April 26, Reuter - Regeneron Pharmaceuticals Inc said the U.S. Patent and Trademark Office declared an inter- ference between its patent claims to the human DNA sequence of ciliary neurotrophic factor (CNTF) and claims relating to human CNTF in a May 1991 patent issued to Synergen Inc . Regeneron's patent claims were recently declared allowable and today's decision of interference means it will be determined which of the two companies came to the discovery first, the company added. In March, Regeneron began a pivotal phase III study to determine safety and efficacy of recombinant human CNTF to treat amyotrophic lateral sclerosis, or Lou Gehrig's disease. Chief Financial Officer Fredric Price later told Reuters the pending decision will not slow down the pace of the trials. REUTER (4) ===== An important note from Bill's list ========== Date : Mon, 26 Apr 1993 01:15:25 EDT Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3212 ---------------------------------------------------- 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 : Looking for computer aids for ALS >From : tyson@ocean.ai.sri.com (Mabry Tyson) Organization: SRI International, Menlo Park, CA I have a friend who has just been diagnosed with ALS (Lou Gehrig's disease). I've just spent a morning in a health library learning more about the disease so I'm just beginning to learn about it. Since speech slurring is his first symptom, I suspect his speech will be one of the first things to go and he will be able to use his computer (a Sun) for some time. At this point he's got many things on his mind, but when he is ready for it, I'd like to be able to offer him information about ways that he can perhaps continue to work (on the computer) and perhaps to use his computer to help him communicate with those around him (eg, speech generation, esp. for those with trouble typing). I saw some articles talking about ALS sufferers using computers but I don't have any idea where to track them down. I was hoping someone here could help me. (I prefer responses by email since I don't normally read this group.) Thanks, Mabry Tyson Tyson@AI.SRI.COM ------ == end of als 36 ==