=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#87, 07 March 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 == == 210+ 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 == == Hardcopy versions (with extensive indexing) available == == from Grant Nicholas (gnicholas@pcgate.lanl.gov) == == A Global Index of issues 1-75 (created by G. Nicholas) == == is available via FTP. The 150K file is named als.index == =============================================================== CONTENTS OF THIS ISSUE: 1 .. hardware/software aids for people with ALS 2 .. free information service 3 .. more ALS citations 4 .. asia-pacific assn for medical informatics 5 .. Riluzole (1) ===== hardware/software aids for people with ALS ========== Date : Sat, 5 Mar 94 20:06:05 PST >From : Gil Frostig Subject: hardware/software aids for people with ALS My name is Gil Frostig, and my father is an ALS patient. Currently he can only use one finger to type on a PC, which is his only way to communicate. The main difficulty he faces is when there is a need to activate more than one key simultaneously (ALT or SHIFT or CTRL combined with another key). We tried software from IBM called ACCESS DOS. It worked for DOS level commands, but not from within applications. I am looking for either software or hardware to solve the problem. Imagining (hoping), maybe there is a keyboard with CTRL-lock or ALT-lock (similar to existing SHIFT-lock key), or maybe something else. If any of you have any bit of information which you could send me, I will be grateful. Gil === = Editorial Note: A very good source for this type of information = is the TRACE RESOURCE BOOK: ASSISTIVE TECHNOLOGIES FOR COMMUNICATION, = CONTROL, AND COMPUTER ACCESS. Published by the Trace R&D Center, = Waisman Center, University of Wisconsin-Madison. TEL 608-262-6966. = They can be reached via e-mail at: info@trace.waisman.wisc.edu === (2) ===== free information service ========== Listname: "Muscular Dystrophy - Patients, Family, & Friends" : Sender : RHARWOOD@BASIX.COM Date : Fri, 04 Mar 1994 14:14:13 -0500 (EST) >From : JWEIR@ubvms.cc.buffalo.edu Subject : free information service To: MD-List@Data.Basix.Com ---------------------------------------------------------------- The Center for Assistive Technology at the University at Buffalo has established Project LINK: Link to Assistive Products. A free, nonprofit service, LINK provides information about assistive devices through the mail. Confidentiality of the consumer is assured. For more information, respond by e-mail, write, or call: Jennifer Weir Project LINK CAT/UB 515 Kimball Tower Buffalo, NY 14214-3079 (800)628-2281 or (716)829-3141 e-mail: Jweir@ubvms.cc.buffalo.edu (3) ===== more ALS citations ========== =============================================== Title : The relationship between abnormalities of cognitive : function and cerebral activation in amyotrophic : lateral sclerosis: A neuropsychological and positron : emission tomography study Author : Kew J.J.M.; Goldstein L.H.; Leigh P.N.; Abrahams S.; : Cosgrave N.; Passingham R.E.; Frackowiak R.S.J.; : Brooks D.J.; Source : 1993 116/6 (1399-1423) BRAIA Brain ================================================ Title : Amyotrophic lateral sclerosis patient antibodies : label Ca2+ channel alpha1 subunit Author : Kimura F.; Smith R.G.; Delbono O.; Nyormoi O.; : Schneider T.; Nastainczyk W.; Hofmann F.; Stefani E.; : Appel S.H.; Source : 1994 35/2 (164-171) ANNED Annals of Neurology =============================================== Title : Trial of immunosuppression in amyotrophic lateral : sclerosis using total lymphoid irradiation Author : Drachman D.B.; Chaudhry V.; Cornblath D.; Kunel R.W.; : Pestronk A.; Clawson L.; Mellits E.D.; Quaskey S.; : Quinn T.; Calkins A.; Order S.; Source : 1994 35/2 (142-150) ANNED Annals of Neurology =============================================== Title : Ciliary neurotrophic factor: Pharmacokinetics and : acute-phase response in rat Author : Dittrich F.; Thoenen H.; Sendtner M.; Source : 1994 35/2 (151-163) ANNED Annals of Neurology =============================================== Title : Amyotrophic lateral sclerosis: Theories and therapies Author : Rowland L.P.; Source : 1994 35/2 (129-130) ANNED Annals of Neurology =============================================== Title : Calcium channels and neuromuscular disease Author : Greenberg D.A.; Source : 1994 35/2 (131-132) ANNED Annals of Neurology =============================================== (4) ===== asia-pacific assn for medical informatics ========== Date : Mon, 7 Mar 1994 11:48:59 +0800 Sender : MEDINF-L >From : K C Lun Subject: Inaugural Conf. - Asia Pacific Assoc. for Medical Informatics INAUGURAL CONFERENCE ASIA PACIFIC ASSOCIATION FOR MEDICAL INFORMATICS, (APAMI '94) Theme: "Health Informatics Comes of Age in the Asia Pacific" November 10-12, 1994, The Mandarin Hotel, Singapore Hosted by The Association for Informatics in Medicine, Singapore (AIMS) With the support of The International Medical Informatics Association (IMIA) and Health informatics associations of Australia, the People's Republic of China, Hong Kong, Indonesia, Japan, Korea, Malaysia, New Zealand, the Philippines, Taiwan and Thailand INVITATION TO PARTICIPATE ------------------------- Dear Friends and Colleagues, On behalf of the Organizing Committee, I am pleased to announce the Inaugural Conference of the Asia Pacific Association for Medical Informatics (APAMI '94) which will be convened in Singapore from 10-12 November 1994 at the Mandarin Hotel. Recognising the importance of the Asia Pacific as a region in the forefront of global scientific, economic and cultural growth and development, the International Medical Informatics Association (IMIA) launched its Asia Pacific Initiative at its General Assembly in Japan last October. I am privileged to have been appointed by IMIA to spearhead this Initiative. I am also very grateful for the overwhelming support from the health informatics associations of Australia, the People's Republic of China, Hong Kong, Indonesia, Japan, Korea, Malaysia, New Zealand, the Philippines, Taiwan and Thailand towards the formation of this new regional Association. The Inaugural Conference to officially launch the new IMIA regional group will bring together healthcare and I.T. professionals from the region to share their experience with the use of information technology in healthcare and to have opportunities for active discussions and information-sharing during the 3-day meeting. The Conference Theme "Health Informatics Comes of Age in the Asia Pacific" aptly heralds the arrival of a new force in health informatics - the Asia Pacific. It is therefore my honour and privilege to invite you to participate in the Inaugural Conference of the Asia Pacific Association for Health Informatics (APAMI '94) so as to forge new links or strengthen existing contacts with colleagues in the Asia-Pacific region. The Organising Committee looks forward to your presence at APAMI '94 in Singapore! Yours very truly, K C Lun, Ph.D. President, Association for Informatics in Medicine, Singapore and Coordinator, IMIA Initiative on the Asia Pacific SCIENTIFIC PROGRAMME COMMITTEE: Dr Branko Cesnik (Australia - Chairman) Mr Ouyang Zhineng (People's Republic of China) Prof. Anthony Hedley (Hong Kong) Mr A M Meliala (Indonesia) Dr. T Takahashi (Japan) Dr Myeng-Ki Kim (Korea) Mr Chong Yok Ching (Malaysia) Dr I H Symonds (New Zealand) Mr Robert F Kaiser, Jr (Philippines) Dr Daniel Hung (Taiwan, R.O.C.) For complete information contact: CONFERENCE SECRETARIAT ---------------------- CTMA Pte Ltd 425A Race Course Road Singapore 0821 Telephone: (65) 299 8992 Fax: (65) 299 8983 E-mail: coflunkc@leonis.nus.sg (5) ===== Riluzole ========== AGENCE FRANCE-PRESSE INTERNATIONAL NEWS Tuesday March 01, 1994 NEW TREATMENT FOR LOU GHERIG'S DISEASE BOSTON, Massachusetts, March 1 (AFP) - A French study may have unearthed a drug for the devastating nerve disorder known as Lou Gherig's disease which has previously defied all treatment. "Survival almost doubled in some patients. That's just unheard of," said Johns Hopkins University's Jeffrey Rothstein, who is conducting another study on the drug called riluzole. The pharmaceutical firm Rhone-Poulenc Rorer financed the study which developed the drug at the Hopital de la Pitie-Salpetriere in Paris. The results were published in this week's New England Journal of Medicine. No drug to date has had any effect on the disease which was known as amyotrophic lateral sclerosis until it was named after baseball player Lou Gherig who died of the ailment in 1941. The relatively rare disease attacks the nervous system, robs people of muscle control and kills within three or four years, though some have survived for decades. The study of 155 patients in France and Belgium found that riluzole reduced deaths by 39 percent after one year and 20 percent after almost two years. Skeptics have criticized the limited scope of the study and experts are awaiting the results of Rothstein's study of nearly 1,000 patients for a final verdict. AFP == end of als 87 ==