=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#43, 14 MAY 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 == == == == *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 network (continued) ========== (a) ----- >Date: 13-May-93 16:04 EDT >From: Giacomo (JA-ko-mo) Borselli <72124.2015@compuserve.com> >Subj: ALS INTEREST GROUP > >Dear Bob, >I just got on CompuServe recently and would like to join your ALS >INTEREST GROUP. I've received hard copies of ALS Digest 26-32 from >Robert Shannon Doty, a great help. (the hard copies AND Robert!) >Back issues would be appreciated. Choose your delivery system; >E-Mail, surface mail, singing telegram, I'm not picky. >2061 SE 15 Ct., Pompano Beach, FL 33062-7603. >Thanks for your efforts, Giacomo > Dear Giacomo ... Welcome to the group. Please read the heading of this issue of the Digest to see how to reach us (on the Internet) from your CompuServe account. Regarding back issues, in the very near future a new ALS oriented e-mail group will be started on a system called LISTSERV. More on that later ... but anyway all back issues of the ALS DIGEST will be available via e-mail requests from that LISTSERV. I have added you to the mailing list so you will be hearing from other ALS-ON-LINE folk soon. rgds,bro (b) ----- >From : ian FRI NDS.IN.TIME phillips >Subject: als >Date : Fri, 7 May 93 23:10:05 MDT > >Dear Bob, >My name is Ian Phillips and would like to >subscribe to your ALS network. I have seen some copy and think >it's a great idea. If anyone who has CompuServe with scanning >WSKE please let me know how you do it. My computer uses a lot >of memory with scanning WSKE and I don't have enough memory left >for CompuServe. Also, I would like to hear from anyone who has >tried or has any information on deprenyl and any up-to-date >information on how CNTF is working out. Finally, I would be >interested to hear from people who think they have benefited >from alternative health care. > Dear Ian ... We have been doing our best to follow the CNTF trials. Please notice the note in this issue from Dr. Rosen at Mass. General Hospital. He is one of the authors of the March 4th article in NATURE. Hope to be hearing from you on-line. rgds,bro (c)----- >Subject: ALS Group >Date : Mon, 10 May 93 11:58:42 +0100 >From : Tom Salt - Ophthalmology > >I saw your posting on bionet.neuroscience re the ALS group. >Can you please send me details, and include me on the mailing >list? My interest is excitatory amino acid research. Tom Salt >______________________________________________________________ > Dr Tom Salt > Department of Visual Science E-Mail: T.Salt@ucl.ac.uk > Institute of Ophthalmology > 11-43 Bath Street Tel: (+44 71) 608 6843 (direct) > LONDON EC1V 9EL Tel: (+44 71) 608 6800 (switchboard) > England FAX: (+44 71) 608 6850 >_______________________________________________________________ > Dr. Salt ... you have been added to the list. Hope you like what we are doing re ALS. Looking forward to hearing from you. rgds,bro (2) ===== re: CNTF ========== Date: 10 May 1993 11:23:52 -0500 (EST) From: ROSEN@HELIX.MGH.HARVARD.EDU Last night (Sunday 5/9/93) on 60 minutes was a segment on CNTF and trials with ALS. It was an interesting piece, concerning whether it was necessary to do a placebo control on ALS patients. One of the individuals interviewed said something that was right on the mark. He said that the reason for the placebo controls was to see if CNTF was actually working. He added that many times in these studies (in fact, more often than not), a drug with great promise fails to deliver. From what I have seen, this is exactly true. I can remember back about 15 years ago when it was thought that interferon might be a panecea for cancer, but it proved amazingly ineffective. No human studies have been done on CNTF and any disease. We have reviewed the literature, and several studies have been done using CNTF in mouse neurological diseases. However, if one looks with a careful eye, CNTF proved effective in only one of the three mouse diseases tested. I think tthere is a good possibility that CNTF might not help ALS patients. But it should be tried because of the general growth/survival promoting activity it has for neurons. Everyone should be aware that the hyperbole about CNTF may lead to a major disappointment in the case of ALS. I also suspect that the reason that Regeneron has applied for orphan drug status for CNTF using ALS as the target disease because they have plans to subsequently determine whether CNTF is effective in any other neurological disease, or whether is might be useful as a "cosmetic" drug for healthy people, as with human growth hormone. I hope we are all pleasantly surprised, and that CNTF is a miracle drug for ALS. I think we will know fairly quickly whether this is going to be true. Dan Rosen (3) ===== request for info from researcher ========== >From : ZINJMAN@uog.pacific.edu Subject: Re: request for information Date : Mon, 10 May 93 22:52:39 PDT Years ago, it was mentioned to me that a study had been done on an "ALS cluster" of former Canadian Forces servicemen who had all served on board a certain ship during a certain time frame. I have been unable to verify/track down any information on this claim. Does anyone have any information on this and/or references to this study? Gary Heathcote, Anthropology Program, Univ. of Guam, UOG Station, Mangilao, Guam 96923 (4) ===== New support group starting ========== Date : Tue, 11 May 1993 09:57:53 -0500 (EST) >From : Jim Davis Subject : ALS Support group Organization: Neurology, SUNY Stony Brook We are starting an ALS support group at Stony Brook and would appreciate any help, advise, mailings, or other information that would help us with our patients. James N. Davis Neurology S.U.N.Y. at Stony Brook HSC T12 020 Stony Brook, N.Y. 11794-8121 TEL:(516) 444-7878 FAX:(516) 444-1474 (5) ===== >From Russia ========== Organization: Yarosl. State Medicine Institute >From : root@ygmi.yars.free.msk.su (Akkuratov Evgenii) Date : Sun, 2 May 93 16:31:01 +0400 (MSD) Subject : help > ALS INTEREST GROUP Scientist of our department work in the field of the morphology of the nervous system. Prof. Stovichek V.Georg: Morphology of the peripheral nervous system. Conformity to natural lows in the structure of visceral nerves and connections between internal organs and nervous centers in the human ontogenesis. Prof. Shilkin V. Valentin: Morphology and enzimochemistry of the nervous ends in the human ontogenesis and in pathological processes. Dr. of Medicine Akkuratov G.Evgeny, Phateev M.Mikhail, Rumyantseva A.Tatyana:Functional, histochemical, immunohistochemical and lectinohistochemical characteristics of neurons of nervous ganglia. The transfer of the horseradish peroxidase and the horseradish- peroxidase-wheat-germ-agglutinin through axons in the peripheral nervous system. Please, if our reseorch suit you "ALS INTEREST GROUP" interests, we would interested in co-operation. Yours sincerely, Dr. of Medicine Akkuratov G. Evgeny. ************************************************ * * * Akkuratov G.Evgenii. * * Departament of Human Anatomy, * * Medical Institut, * * Revolutionnay str.,5, * * Yaroslavl.150000, * * Russia * * * * Tel : (085) 22-82-12 * * (085) 22-82-23 * * Email: root@ygmi.yars.free.msk.su * * * ************************************************ == end of als 43 ==