=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#44, 23 MAY 1993) == == == == To subscribe, to unsubscribe, to contribute notes, etc. == == to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == == == Back issues are available via e-mail from: == == LISTSERV@mailer.fsu.edu (see instructions in this issue) == == == == All interested people may "broadcast" messages to == == ALS Digest subscribers by sending to: == == als@huey.met.fsu.edu == == == == *From* CompuServe, the address would be: == == >Internet:bro@huey.met.fsu.edu == == >Internet:als@huey.met.fsu.edu == == == == The month of May has been designated by the US Congress == == as: /// NATIONAL ALS AWARENESS MONTH /// == == == =============================================================== (1) ===== Building the ALS e-mail network (continued) ========== (a)----- Date: Mon, 17 May 93 09:04:22 MDT From: dhd@druid.hsc.colorado.edu (Diedra Donaldson) Thanks for letting me know about the ALS e-mail group. This is my maiden voyage on e-mail, so I hope it works. Provided I can work this e-mail concept, I would be happy to participate in the ALS e-mail network and would be happy to answer questions about the disease and the research that's going on. I am a neurologist doing basic research on ALS and am part of the group that found the mutations in superoxide dismutase in familial ALS. We are now looking at several genes in sporadic ALS, and anyone with sporadic ALS who would like to donate a small amount of blood to this study may contact me through e-mail or at 303-333-4515 or 1899 Gaylord St., Denver, CO 80206 (Eleanor Roosevelt Institute). Sincerely, Deirdre Donaldson (b)----- Date : Mon, 17 May 1993 13:09:03 -0600 >From : denise l grayarosek Subject: Joining this ALS Interest Group Hi, Bob. I think you have already added me to this E-mail group; at least, I've been receiving mail from you consistently since I forwarded a letter from Foster Hall. Let me just officially join now, and add that I have started (along with Foster) a non-profit organization in Albuquerque, New Mexico, dedicated to helping people who have A.L.S. (Foster has ALS, but I don't). We work with people in a variety of ways, providing free services in such areas as caseworker support, augmentative communication, health care plans, etc. By the way, in connection with Ian Phillip's letter a few days ago -- I've since visited him with a mini version of the Words+ Scanning Wiske program (it takes 83K, as opposed to more than 200K of memory) and it works fine with Compuserve (Dos version 2.0). Michael Gray President, Friends in Time, Inc. P.S. There's another member of our local Albuquerque ALS group who would like to join the E-mail group. Her name is Marcia Olsen (molsen@carina.unm.edu). (2) ===== help with WSKE/CompuServe ========== Date : 17 May 93 16:42:52 EDT >From : Charles M Ward <72567.400@CompuServe.COM> Subject: Re: als 43 In answer to the question about compuserve and WSKE. I currently use WSKE 5.x on a 386 computer. This version loads the word tables into expanded memory so WSKE uses 170 k of main memory. This is enough to let me run the dos compuserve information manager. I used to run WSKE version 4.17 with a communication program with no trouble. CIM is much more useful. The only problem I have now is I can't use sidetalk, it will lock up the computer. Mike Ward (3) ===== 60 minutes, a note (and response) from bionet.neuroscience ========== ALS and 60 min bionet.neuroscience 11:44 pm May 9, 1993 (IO20903@MAINE.MAINE.EDU) (From News system) Did anyone see the show? Last Sunday (Mother's Day) 60 minutes portrayed the FDA, doctors, and and scientists as generally uncaring people. The segement featured mainly a man with ALS and his lack of desire to receive the placebo. His basic arguement was that he was going to die so why should he be protected from death by a trial. The answer seems obvious, however 60 min. did not present any REAL facts about ALS and the treatment - from REGENERON and I cannot recall the name something like cntf. NO FACTS. The story left one with many incomplete notions about ALS and how a trial is conducted. It seems to me that a trial is needed. If none occurs, especially due to als'unpredicatble time domain, we will never know how well this suposed treatment really works. Comments? additional thoughts? Nathan E. Tableman Response 1 of 1 bionet.neuroscience 5:09 pm May 10, 1993" chemento@ursa.arc.nasa.gov)(From News system) It has been my experience that any time 60 minutes does a piece on a subject that I consider myself knowledgable about, the presentation is awful. I stopped watching the show several years ago. 20-20 does a much better job of fairly and accurately presenting science/medicine related topics. ******************************************************************** *Thomas C. Chimento Ph.D. Internet: chimento@pioneer.arc.nasa.gov * *NASA, Ames Phone: 415-604-0376 (and Voice Mail) * *Biocomputation Center Fax: 415-604-3954 * *MS 239-11 * *Moffett Field, CA 94035-1000 * *+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+** (4) ==== back issues of ALS DIGEST/ LISTSERV info, etc. ========== >Date : 21 May 93 18:55:51 EDT >From : Jerry Swanson <72163.2514@CompuServe.COM> >Subject: back issues 1-41 > >Bob, I'm not sure if you're getting all of my messages or how >long I should wait for your response. I sent you a request on >5/10 for back issues of the Digest. In it I asked for issues #1 >thru #41. This is a change from a earlier request. My computer >was down and I lost some issues. I would like you to send them >via CompuServe, even though it will cost me some money. Thanks >for being patient. This service has been very helpful to me. Jerry > Jerry ... First let me apologize to you and all others who have been disappointed with their request for back issues. The problem is that I am also the primary caretaker of my wife who has ALS, so I do not have very much time. Also, thanks to good people like yourself, the ALS network has grown much faster than I ever thought it would. We now have almost 100 ALS-interested-folk on-line, and this is very welcome news! A good friend of ours (Don Pace, pace@mailer.fsu.edu) has helped us by letting us use the LISTSERV software at Florida State University. In effect, a new ALS-oriented e-mail group has been set up via this LISTSERV. All back issues of the ALS Digest will be available from that LISTSERV also ... though just now it only contains the first 17 issues. In order to get the back issues, one should send e-mail to: LISTSERV@mailer.fsu.edu Then in the body of your message say (it ignores the subject line) GET ALS ALSD01 GET ALS ALSD02 GET ALS ALSD03 etc. To join the ALS-related discussion on that LISTSERV, send e-mail to: LISTSERV@mailer.fsu.edu In the body of the message say ... SUBSCRIBE ALS yourfirstname yourlastname To contribute notes to that group please send them to: als@mailer.fsu.edu It will be an unmoderated discussion group that has been set up primarily for use by ALS patients and their supporters ... though all interested people are welcome (and invited) to join. I will be giving more complete details about this LISTSERV soon, but for now be advised that it is in operation, that some (soon all) back issues of the ALS Digest will be available there, and that all interested people are welcome to participate. Sincerely, Bob Broedel, Tallahassee. == end of als 44 ==