Date: Wed, 2 Nov 94 14:58:00 EST From: Bob Broedel To: Stuart.Neilson@brunel.ac.uk Subject: Re: ALS Interest Group List =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#134, 11 October 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig'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 == == 360+ 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 .. computer access 2 .. hydrogen peroxide 3 .. ALS/Lou Gehrigs disease 4 .. re: ALS/Lou Gehrigs disease 5 .. Private life of Chairman Mao 6 .. research collaboration 7 .. some recent publications (1) ===== computer access ========== Date : 09 Oct 94 23:38:40 EDT >From : wayne <70303.173@compuserve.com> Subject: computer access I've got a Morse code computer setup that others may find useful. I type with two switches placed next to my headrest by rocking my head back and forth. The switches are mounted on flexible tubing so positioning is easy. They could be placed so any muscle groups could be used. Wires from the switches run to an infrared transmitter velcroed to the side of my wheelchair. The reciever is velcroed underneath the computer table. The "FRED" IR reciever/transmitter pair handles the two wires, costs about $275 US and uses the same simple technology found in VCR remote controls. Though it's not necessary, it allows me to not need to be directly wired to the rest of the equipment. >From the reciever the wires run to a "Darci Too" keyboard emulator, which replaces the keyboard and mouse. The regular keyboard and mouse plug into the Darci so others can still use them normally. I have a PC clone, but it also works with Macs, DECs, Apple IIe, and Apple IIGS. It has extended Morse codes for all keys and the mouse. For the PC this includes function keys, and locking for the shift, control, and alt keys. As input it can take 1, 2, or 3 key Morse code, scanning, joystick, or matrix keyboard. It costs about $1000 US. The equipment was recomended and set up by CART at Rancho Los Amigos Hospital in Los Angeles and paid for by California State Rehabilitation since it keeps me working as a software designer. My top speed is 10 to 12 words per minute, but typing this took a little over an hour. Wayne Phillips 70303.173@compuserve.com Darci Too WesTest Engineering Corp. 1470 N. Main Bountiful, UT 84010 (801) 298-7100 FRED Don Johnson Developmental Equipment, Inc. P.O. Box 639 Wauconda, IL 60084 (800) 999-4660 (2) ===== hydrogen peroxide ========== Newsgroups: misc.health.alternative >From : gr3k@Virginia.EDU (Gregory P. Riddick) Subject : Re: Article on Hydrogen Peroxide Date : Wed, 5 Oct 1994 21:54:45 GMT I think that the response someone made about the Ozone therapy would apply here also. H202 is a powerful oxidant, like ozone, and besides killing a lot of bugs in your body, it can attack any tissue it comes in contact with. Oxidants can damage cell membranes, proteins, and DNA. In the case of DNA, the damage may not be reversible. I work in a lab that investigates the role of oxidants and free-radicals in neurological disease...there seems to be a lot of evidence for their role in Alzheimers, Parkinson's disease, ALS, and other conditions. They are also implicated in producing mutations that can lead to cancer. They bottom line is that H202 is great for disinfecting cuts, but don't let anyone tell you that it's safe for you to take internally. (3) ===== ALS/Lou Gehrigs disease ========== >From : jime@ic.mankato.mn.us (Jim Engelen) Newsgroups: sci.med Subject : ALS/Lou Gehrigs disease Date : 6 Oct 1994 01:11:16 GMT I am a 57 yr old male and have had ALS since 1974. Someone asked me if that was a record for longivity and now I am wondering as well. I just had an appointment at Mayo Clinic a few days ago and asked there but of course, no for sure answer. I was told however, that there was a professor in the UK who may have been affliicted as long or longer than I have. Any input will be appreciated. (4) ===== re: ALS/Lou Gehrigs disease ========== >From : jzisfein@pipeline.com (Jim Zisfein) Newsgroups: sci.med Subject : Re: ALS/Lou Gehrigs disease Date : 7 Oct 1994 20:24:21 -0400 jime@ic.mankato.mn.us (Jim Engelen) wrote: >I am a 57 yr old male and have had ALS since 1974. >Someone asked me if that was a record for longivity and >now I am wondering as well. I just had an appointment >at Mayo Clinic a few days ago and asked there but of That beats any record I know. The average life expectancy is 3-5 years. It's somewhat longer in the lower-motor-neuron-only variant of ALS, but 20 years is extraordinary. I will bring up the obvious question: was the diagnosis right? Multifocal motor neuropathy can look like ALS clinically but has a very different EMG. MMN is not necessarily a progressive or fatal condition; some patients have remissions, and many become stable. It was only described about 5 years ago. You might want to ask your physicians if you might have MMN instead of ALS. Here's to the next 20 years! Jim Zisfein (5) ===== Private life of Chairman Mao ========== Newsgroups: soc.culture.china >From : migaldi_scott@macmail1.csg.mot.com (Scott F. Migaldi) Subject : Private life of Chairmen Mao I just saw an article in my paper today discussing a new book on Chairmen Mao. The book is titled 'Private Life of Chairmen Mao' and was written by his private physician, Dr. Li Zhisui. Dr. Li confirms several rumors I have heard about the great helmsman, Mao was sexually insatiable, Mao cared nothing for the people dallied with, he never bathed, nor died from Parkinson's disease. Dr. Li stated Mao cause of death was from amyotrophic lateral sclerosis, sometimes called Lou Gherig's disease. This is the same affliction that Stephen Hawking is suffering from. It is interesting to note that Dr. Li now lives in the U.S. after leaving China soon after Mao death. I guess the good doctor knew when to leave. He also talks about the privledge of the CCP in obtaining servents and luxuries over what the 'people' would have. I was wondering if anyone else has seen or read this book? -- Scott F. Migaldi, KF5JQ e-mail:migaldi_scott@macmail1.csg.mot.com The opinions expressed are my own and my cat's. They are not my employer's. **Don't be roadkill on the information superhighway!** (6) ===== research collaboration ========== RESEARCH COLLABORATION TO OFFER ACCESS TO WORLD'S LARGEST HUMAN DNA- SEQUENCE DATABASE PHILADELPHIA, Oct. 3 /PRNewswire/ -- A gene-sequencing collaboration revealed today that it has completed the initial technical work required to give academic scientists access to the largest human-gene database in the world. The information and materials that make up the database, called The Human cDNA Database, are the product of a two-year joint research project between The Institute for Genomic Research (TIGR) and Human Genome Sciences, Inc. (Nasdaq: HGSI) (HGS). The database includes partial and complete DNA sequences characterizing between 30,000 and 35, 000 human genes; it also provides information about where in the body and how frequently individual genes are expressed. This information includes more than 150,000 partial human gene sequences, substantially more than are available from any other source; in many instances, several gene fragments relate to a single gene. In elucidating the structure of these fragments, the exact sequence of more than 50 million nucleotides was determined. Nucleotides are the fundamental units of genetic data. What this database represents is the first stage in our effort to decode all human genes, said J. Craig Venter, Director of TIGR. We have been testing the database since the end of July, and it works well. As we have noted repeatedly since we undertook our gene-discovery project, we will launch the database upon publication of a peer-reviewed paper describing the project and after completion of terms of access to the database that will be of value to academic research institutions. The Human cDNA Database is managed and operated by TIGR. It is supported financially by HGS and SmithKline Beecham (NYSE: SBH) (SB), a corporate partner of HGS. Together, HGS and SB have already committed more than $100 million to DNA sequencing, bioinformatics, and gene- function analysis. In addition to that investment in scientific research, SB and HGS have committed up to $8.5 million to TIGR in order to provide the capabilities needed to make gene sequences available to the academic community. The availability of this database should accelerate a wide spectrum of academic research, said William A. Haseltine, Chairman of the Board of Directors and Chief Executive Officer of HGS. At the same time, the conditions that govern access to these data should preserve the incentive for the private sector to invest the funds necessary to bring new drugs and diagnostic products to market. The database will be available to researchers at nonprofit institutions that sign access agreements. Those researchers may use the data however they wish, and they may publish their work as they wish, provided they cite their use of the data. Not all the data are proprietary. If, however, those data that are proprietary are used in making a patentable discovery, HGS has an option to license that discovery. If HGS exercises that option, HGS and the inventor's institution would negotiate the terms and conditions of a license, including royalties payable to the institution. If the option is not exercised, the institution is free to commercialize the discovery without further obligation to HGS. The cDNA sequencing technique seeks to decipher only that small fraction of DNA which actually encodes the structure of proteins and thus determines the construction and function of the body. Three to five per cent of the DNA in human chromosomes is thought to be expressed in this way; the remainder has a still obscure function, if any. Using automated sequencing equipment and a massive computational biology capability, scientists at TIGR and HGS can sequence several hundred thousand base pairs of DNA a day. The work accomplished by TIGR, HGS, and SB over the past two years has generated important new insights into the genetic basis of disease and into the development of new methods for converting gene-sequence data into unique approaches to the diagnosis and treatment of major diseases, said George Poste, Chairman, Research and Development, SB Pharmaceuticals. The Institute for Genomic Research is a not-for-profit scientific center devoted to accelerating the elucidation of the nature and function of human genes and ensuring that this basic knowledge is made available to the scientific community for the better understanding of human life, development of diagnostic and therapeutic products, and identification of the basis of genetic disease. Human Genome Sciences, Inc. is a company with the mission to develop and market unique drugs and diagnostic products based on its leadership position in the discovery and expression of novel genes of human, animal, plant, and microbial origin. SmithKline Beecham -- one of the world's leading healthcare companies -- discovers, develops, manufactures, and markets human and animal pharmaceuticals and vaccines, over-the-counter medicines, health- related consumer products, and clinical laboratory testing services. CONTACTS: Damar Hawkins of The Institute for Genomic Research, 301-869-9056, Bradley Lorimier of Human Genome Sciences, 301-309-8504, Richard Koenig of SmithKline Beecham-U.S., 215-751-3415, Sharon Gamsin of SmithKline Beecham-U.K., 081-975-2073 (7) ===== some recent publications ========== ================================================ Title : Retroviral synthetic peptide serum antibodies in human : sporadic amyotrophic lateral sclerosis. Author : Westarp ME; Foring B; Rasmussen H; Schraff S; Mertens T; : Kornhuber HH Source : Peptides 1994;15(2):207-14 ================================================ Title : Comparative study of spinal cord ubiquitin expression in : post-poliomyelitis and sporadic amyotrophic lateral : sclerosis. Author : Ito H; Hirano A Source : ACTA Neuropathologica 1994;87(4):425-9 ================================================ Title : Insulin-like and fibroblast growth factors in spinal cords, : nerve roots and skeletal muscle of human controls and : patients with amyotrophic lateral sclerosis. Author : Kerkhoff H; Hassan SM; Troost D; Van Etten RW; Veldman H; : Jennekens FG Source : ACTA Neuropathologica 1994;87(4):411-21 ================================================ Title : Increased concentration of C4d complement protein in CSF : in amyotrophic lateral sclerosis. Author : Tsuboi Y;Yamada T Source : Journal of Neurology, Neurosurgery and Psychiatry : 1994 Jul;57(7):859-61 ================================================ Title : Longitudinal analysis of amyotrophic lateral sclerosis : mortality in Norway, 1966-1989: evidence for a susceptible : subpopulation. Author : Neilson S; Robinson I; Nymoen EH Source : Journal of the Neurological Sciences : 1994 Apr;122(2):148-54 ================================================= Title : Decremental motor responses to repetitive nerve stimulation : in ALS. Author : Killian JM; Wilfong AA; Burnett L; Appel SH; Boland D Source : Muscle and Nerve 1994 Jul;17(7):747-54 ================================================= Title : Pattern of nervous tissue immunostaining by human anti- : glycolipid antibodies. Author : Nardelli E; Anzini P; Moretto G; Rizzuto N; Steck AJ Source : Journal of the Neurological Sciences : 1994 Apr;122(2):220-7 ================================================= Title : Expression of myoglobin gene in skeletal muscle of patients : with neuromuscular diseases. Author : Kawai H; Naruo T; Yoneda K; Masuda K; Mitsui T; Nishida Y Source : Muscle and Nerve 1994 Jul;17(7):720-4 ================================================= Title : October 1942: a strange epidemic paralysis in Saval, : Verona, Italy. Revision and diagnosis 50 years later of : tri-ortho-cresyl phosphate poisoning. Author : Tosi L; Righetti C; Adami L; Zanette G Source : Journal of Neurology, Neurosurgery and Psychiatry : 1994 Jul;57(7):810-3 ================================================= Title : Sequences specific for enterovirus detected in spinal : cord from patients with motor neurone disease. Author : Woodall CJ; Riding MH; Graham DI; Clements GB Source : British Medical Journal 1994 Jun 11;308(6943):1541-3 ================================================= Title : Down-regulation of copper/zinc superoxide dismutase causes : apoptotic death in PC12 neuronal cells. Author : Troy CM; Shelanski ML Source : Proceedings of the National Academy of Sciences of the USA : 1994 Jul 5;91(14):6384-7 ================================================== === end of als 134 ===