=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#81, 02 February 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. Currently there are == == 200+ subscribers. == == == == 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 == == == == The ALS Digest is not a peer reviewed journal and it is == == not edited by an MD. It comes out (usually) weekly. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== == Back issues are available via e-mail from: == == LISTSERV@mailer.fsu.edu == == send an e-mail message that says INDEX ALS == == Also available via anonymous FTP at mailer.fsu.edu == == directory pub/als == == A Global Index of issues 1-75 (created by G. Nicholas) == == is available via FTP. The 150K file is named als.index == == Hardcopy versions (with extensive indexing) available == == from Grant Nicholas (gnicholas@pcgate.lanl.gov) == =============================================================== CONTENTS OF THIS ISSUE: 1 .. seeking neurologists who are treating ALS patients 2 .. request for info ... free radicals 3 .. recent citation ... SOD1 & ALS 4 .. HandiMail information 5 .. new organization for augmentative communication 6 .. course announcement EMG 7 .. adaptive technology book 8 .. polymyositis 9 .. announcement - biomedical gopher (1) ===== seeking neurologists who are treating ALS patients ========== /// Please pass this message to as many neurologists as possible. === The Wilkerson Group, a consulting firm dedicated solely to the health care industry, is looking to speak with neurologists in the United States who are currently treating ALS patients. The conversation, which would occur over the phone, would focus around a drug currently in the clinical trials to slow the progression of ALS. The interview will last approximately 30-40 minutes, and an honorarium will be awarded to all participants. Anyone interested should call 1-800-654-8667 and ask for Jeb Webber (ext. 2045) or Shade Cronan (ext. 2042). THE WILKERSON GROUP, INC. 666 Third Avenue New York NY 10017 TEL 212-557-1717 FAX 212-972-1056 === (2) ===== request for info ... free radicals ========== Date : 24 Jan 1994 11:49:55 >From : Tracy Brown Subject: Request for info... I was wondering if anyone has access to the book: Free Radicals in Biology and Medicine Clarendon Press, Oxford 1989 It was referenced in the Science magazine article that was referred to in a recent digest. The article mentions that certain environmental toxins can cause an excess of free radicals to be generated, and refers to the above book. Any info would be much appreciated, like for instance a review of the book, or a listing of the table of contents. Thanks, Tracy Brown P.S. - I priced the book at a local Barnes&Noble, and it sells for $98.00, which seemed a bit steep. (3) ===== citation of a recent article about SOD1 & ALS ========== =============================================== Title : Cu/Zn superoxide dismutase activity in familial and : sporadic amyotrophic lateral sclerosis Author : Robberecht W.; Sapp P.; Viaene M.K.; Rosen D.; : McKenna-Yasek D.; Haines J.; Horvitz R.; Theys P.; : Brown R. Jr.; Source : 1994 62/1 (384-387) JONRA Journal of Neurochemistry : Abstract : Amyotrophic lateral sclerosis (ALS) is a degenerative : motor neuron disease that is inherited as an autosomal : dominant trait in ~10% of cases. Recently we and others : identified several single-base mutations in the Cu/Zn : superoxide dismutase (SOD1) gene in patients with : familial ALS (FALS). Using single-strand conformational : polymorphism, we studied the C to G mutation in exon 2 : of the SOD1 gene (resulting in a leucine to valine : substitution in position 38) in affected and unaffected : members of a large Belgian family with FALS. We measured : the SOD1 activity in red blood cell lysates in 14 members : of this family, including the only surviving clinically : affected patient. SOD1 activity of the family members : carrying the mutation was less than half that of members : without the mutation. In addition, in 11 patients with : sporadic ALS and 11 age-and sex-matched controls, red : blood cell SOD1 activity was normal. These studies : indicate that SOD1 activity is reduced in these FALS : patients but not in sporadic ALS patients. Moreover, : this SOD1 enzyme abnormality is detectable years before : onset of clinical ALS in carriers of this FALS mutation. ========================================================================= (4) ===== HandiMail information ========== Date : Wed, 2 Feb 94 06:15 EST >From : "Sigea Systems, Inc." <0002726865@mcimail.com> Subject: HandiMail information... Bob... Thanks very much for sending me your newsletters. I will pass those files on to the HandiMailers who are involved with ALS patients to show them what you are doing... Here's some information on HandiMail. I hope you find it useful... HANDIMAIL PROJECT HandiMail(tm) provides communications between physically challenged people and the world around them using inexpensive computers, Courier electronic mail and easy to use software -- Telecommuter(R) One Button Mail(tm). Suddenly, a person who can't talk can communicate with family, friends, and peers via HandiMail! Since One Button Mail does not require a pointing device, even people using headpointers or single switch setups can use HandiMail. Challenged people are no longer restricted to their immediate surroundings -- they can communicate with each other and the world through HandiMail! The HandiMail system is comprised of three parts: 1. A host computer running electronic mail. For this project, we are using our own Courier electronic mail software running on a personal computer located in New Jersey, at the home of one of the HandiMailers. 2. A remote IBM PC compatible computer running Telecommuter One Button Mail. The computer doesn't have to be anything fancy, even an original IBM PC with two 360K floppy drives. (We strongly recommend using a hard disk because it's faster than floppies and it holds much more information.) With One Button Mail, the user never interacts directly with the host computer. As a result, the remote user can work at his or her own pace, completely independent of the demands of the host electronic mail system. What the user sees and touches remains the same, regardless of which electronic mail system serves as the host. One Button Mail also supports popular electronic mail services such as MCI Mail and CompuServe. See the One Button Mail brochure for more information. 3. Adaptive software and hardware to accommodate individual needs. For example, a person with a headpointer would use our Prefix software to create Shift/Ctrl/Alt characters one keystroke at a time. We also have keyboard scanners and emulators for people who require this kind of assistance. The HandiMail System has been in operation for more than five years. We started with a group of challenged students at a county college in New Jersey, adding "friends of friends" over the years. Nearly fifty people are currently active on the system, including several families who keep in touch regularly with HandiMail. Telecommuter is a registered trademark of Sigea Systems, Inc. For more information on HandiMail, please contact: Harry Brawley Sigea Systems, Inc. 19 Pelham Road Weston MA 02193 TEL 617-647-1098 FAX 617-899-8025 (call first) E-M 0002726865@mcimail.com or 70310.171@compuserve.com (5) ===== new organization formed to help with augmentative communication ========== === FOR IMMEDIATE RELEASE === NEW ORGANIZATION FORMED TO PROVIDE AUGMENTATIVE COMMUNICATION SOLUTIONS TO PATIENTS WITH LOU GEHRIG'S DISEASE. OCTOBER 25, 1993 - For a patient suffering from a neurologically impairing disease, the inability to communicate daily needs, feelings, and intentions can be both frustrating and devastating. For this reason, professionals who work among the ALS population, have come together to establish Communication Independence for Neurologically Impaired (CINI). CINI, a New York-based, not-for-profit organization, is a resource center dedicated to augmentative communication solutions for the ALS patient population and the ALS professional community. A comprehensive resource guide is planned for Spring, 1994. This guide will provide an overview for patients, caregivers, and the medical community regarding available communication solutions, including speech and dietary concerns, and reference materials. Additionally, the communication center will provide expert consultations, communication equipment, and will promote the exchange of ALS communication knowledge, particularly through electronic bulletin boards. All efforts are focused on the goal of maximizing and advancing communication for ALS patients. Amyotrophic Lateral Sclerosis is a progressive and fatal neuromuscular disease affecting a select group of nerve cells and pathways in the brain and spinal cord which leads to progressive paralysis of the muscles. The mind, however, is not affected. Please contact us at: Marta Kazandjian, Executive Director Peter Strugatz, Presddent Communication Independence for Neurologically Impaired 250 Mercer Street, Suite B-1608 New York NY 10012 TEL 516-981-3394 E-M 73523.151@compuserve.com also Prodigy: XKBG36A (6) ===== course announcement - EMG ========== Date : Tue, 1 Feb 1994 08:55:08 -0500 Sender : Biomechanics and Movement Science listserver : >From : Lars Oddsson Subject: Surface Electromyography course announcement ***SURFACE ELECTROMYOGRAPHY: THEORY AND PRACTICE*** June 17 & 18, 1994 NeuroMuscular Research Center Boston University Boston, MA This course is designed to benefit the individual who has used surface electromyography on occasion and wishes to improve his/her skills in the art of detecting the EMG signal, enhance his/her understanding of the information contained in the EMG signal and learn novel applications of the EMG signal. Topics to be Addressed: * Theory of Electromyography * Technical Considerations * Practical Aspects of Detecting the EMG Signal * Factors that Affect the Amplitude & Frequency of the EMG Signal * EMG Signal & Force * EMG Signal & Fatigue * Clinical Applications of the EMG Signal Course Format: * Morning Session: Didactic presentation * Afternoon Session: Demonstration & hands-on practice Registration Information: * The cost for the two-day course is $350.00 (U.S. dollars) per person which includes two continental breakfasts, beverages, and course handouts. * Lodging is available in student housing from $35.00 per day or in nearby hotels from $88.00-$189.00 per day. * Continuing education credits are pending. For additional information, please write to: Carlo J. De Luca NeuroMuscular Research Center Boston University 44 Cummington Street Boston, MA 02215 Phone: (617) 353-9757 Fax: (617) 353-5737 E-Mail: DAVIS@bunmrg.bu.edu (7) ===== adaptive technology book ========== Date : Wed, 26 Jan 1994 00:14:17 GMT Sender : Multiple Sclerosis Discussion/Support : >From : joe j lazzaro Subject: Adaptive Technology Book NEW GUIDE DESCRIBES HOW TO ADAPT PC'S FOR THE DISABLED "Adaptive Technologies for Learning and Work Environments" by Joseph J. Lazzaro is a 250 page illustrated guide on how to adapt personal computers for individuals with disabilities. The book concentrates on using computers to access information, which is critical to job and scholastic performance. The book is intended for individuals with visual, hearing, motor, and speech impairments. The text is aimed at end users, office administrators, rehabilitation professionals, librarians, managers, teachers, human resource specialists, computer consultants, network administrators, anyone who must provide reasonable accommodation or adaptive equipment to comply with the Americans with Disabilities Act. The book discusses speech synthesizers and screen readers, magnification systems, braille displays and printers, braille translation software, optical character recognition systems, text telephones, baudot/ascii modems, assistive listening devices, signaling systems, alternative keyboards and input devices, voice recognition systems, keyboard enhancement software, alternative communications systems, environmental controls, and much more. The text also discusses how to convert an adapted personal computer into a library of information by linking with local area networks, accessing online databanks, or using compact disk reference systems. Included are lists of bulletin boards, online services, CDROM providers, as well as public access Internet sites. The book also describes how to select appropriate adaptive hardware and software for any situation, as well as how to furnish training and technical support. Sources of financial aid are also presented. Throughout the book, more than 120 specific adaptive products are described as examples of the innumerable devices available. Practical, how-to- do-it sections explain installation procedures and provide examples of how to interface mainstream and adaptive systems. Extensive appendixes provide names and addresses of useful resources. These include equipment manufacturers, conferences, journals and newsletters. A subject and product index is also included. The book is currently being produced on computer disk for print impaired users by Recording For The Blind. ORDERING INSTRUCTIONS "ADAPTIVE TECHNOLOGIES FOR LEARNING AND WORK ENVIRONMENTS" JOSEPH J. LAZZARO THE AMERICAN LIBRARY ASSOCIATION 50 EAST HURON STREET CHICAGO, IL 60611 PHONE: 312-280-5108 ISBN: 0-8389-0615-X PAGES: 251 PRICE: $35.00 US TOLL FREE ORDER LINE: 800-545-2433 PRESS #7 FROM THE VOICE MENU FOR THE ORDERING DEPT. INTERNATIONAL ORDERING INSTRUCTIONS Eurospan 3 Henrietta Street Covent Garden London England WC2E8LU Phone: 011-44-71-240-0856 (8) ===== polymyositis ========== Date : Tue, 11 Jan 1994 11:35:08 +0000 Sender : Medical Libraries Discussion List : >From : Niall McSweeney Subject: Polymyositis I would be very grateful if anyone could tell me of a support group or information group dealing with the neurological disorder: "POLYMYOSITIS" Thanking you in advance.Please contact me directly. Mr. Niall McSweeney, Medical Librarian, Cork Regional Hospital, Wilton, Cork City, Ireland. adlb8010@iruccvax.ucc.ie (9) ===== announcement - biomedical gopher ========== Date : Fri, 21 Jan 1994 16:42:03 -0500 Sender : Medical Libraries Discussion List : >From : Karla Hahn Subject: Announcement of a new biomedical gopher The William H. Welch Medical Library is pleased to announce the release of a new biomedical gopher server, the Welch Medical Library Gopher, which can be accessed by "gophering" to welchlink.welch.jhu.edu. An especially useful feature of this gopher server is its task-based organizational scheme. For instance, users will find Internet and Welch resources organized under such menus as "Caring for patients," "Basic science research resources," "Keeping up with the news," and "Exploring the Internet." This task-oriented model grew out of library-wide strategic planning directed toward developing a "Welch Workstation." Ultimately, the Welch Workstation will provide single-point access to information resources and tools for our users. Comments and inquiries related to our gopher are welcome and can be addressed to: Karla Hahn Internet Services Librarian Welch Medical Library Johns Hopkins University khahn@library.welch.jhu.edu (410) 614-1286 == end of als 81 ==