Date: Mon, 18 Dec 95 13:39:23 EST From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD232 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#232, 18 December 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == 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 == == 1320+ 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 == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/alsig.htm == =============================================================== == A full set of back issues (on MSDOS 3.5 INCH HD diskette) == == are available by sending me your full mailing address. == == They are free-of-charge. International requests welcome. == =============================================================== CONTENTS OF THIS ISSUE: 0 .. Editorial 1 .. An outcome of misinformation on ALS 2 .. ALS Guide Part 3 - Organizations & Resources 3 .. ALS Guide Part 4 - Drugs 4 .. ALS Guide Part 5 - Treatment Centers 5 .. CEP347 6 .. Procysteine 7 .. ALS drugs 8 .. VisionKey eye-controlled communicator (0) ===== Editorial ========== This "disk full" problem with ALSD231 was here with my system, not with you as receivers ... so the problem was *not* with your Internet service provider. rgds,bro (1) ===== An outcome of misinformation on ALS ========== Date : 07 Dec 95 10:59:05 EST >From : "Pamela Cazzolli, RN" <74553.2036@compuserve.com> Subject: An outcome of misinformation on ALS In support of Dr. Edward Anthony Oppenheimer's comments in ALS Digest #227 that ALS is not a fatal disease, I would like to add: Since ALS is NOT fatal when mechanical ventilation is successfully used and complications are avoided, it is important that persons with ALS be given accurate, sufficient and understandable information when making life choices. The misconception that ALS is always "fatal" is one reason why some persons choose tracheostomy ventilation. Believing that they are soon "going to die anyhow," some persons choose this alternative, not realizing that they may live indefinitely, since mechanical ventilation prevents breathing failure (as breathing muscles become weak due to motor neuron degeneration). Unfortunately, misinformation may result in an unpleasant outcome for persons who are not the best candidates for this life option. On the other hand, some individuals are good candidates for breathing support and are very satisfied with their lives. However, when making decisions, people should have the right to the right information for making the best choices. Like never before, there are methods available for persons with ALS to continue breathing. And like never before, persons with ALS have the choice to continue living. Pamela A. Cazzolli, R.N., ALS Nurse Consultant (2) ===== ALS Guide Part 3 - Organizations & Resources ========== Date : Thu, 7 Dec 1995 16:02:04 -0500 >From : PALSMD@aol.com Subject: ALS Guide Pt 3 - Organizations & Resources Organizations & Resources The ALS Association 21021 Ventura Blvd., Suite 321 Woodland Hills, CA 91364-2206 Tel: (800) 782-4747 Tel: (818) 340-7500 Fax: (818) 340-2060 Muscular Dystrophy Association (Michelle Girard) 3300 East Sunrise Tucson, AZ 85718 Tel: (800) 572-1717 Fax: (520) 529-5454 The Les Turner ALS Foundation 3325 Main Street Skokie, IL 60076 Tel: (708) 679-3311 Fax: (708) 679-9109 Forbes Norris MDA/ALS Research Center at California Pacific Medical Center (Deborah Gelinas, M.D.-Michelle Murray) 2324 Sacremento Street, Suite 150 San Francisco, CA 94115 Tel: (415) 923-3604 Fax: (415) 673-5184 ALS Society of Canada 220 - 6 Adelaide Street East Toronto, Ontario, M5C 1H6 CANADA Tel: (416) 362-0269 Tel: (800) 267-4ALS (toll-free in Canada) Fax: (416) 362-0414 E-M alssoc@inforamp.net Social Security Office Tel: (800) 772-1213 The above organizations provide tremendous resources and a variety of services. Some offer funding for care or equipment as well as materials and services at a reduced rate or no charge. If you haven't yet been in contact with each of them, call or write today. The MDA number will give you a local or regional office. Also, just to have several pieces of information in one place, I've included the number to call when you're ready to initiate Social Security. Once you're disabled from work, call the above number and make sure you explain to them the circumstances of your illness, (terminal illness, prognosis), and that they should expedite the paperwork. If eligible, payments should begin in approximately six months. ONLINE/INTERNET ALS SERVICES America Online ALS Bulletin Board: Main Menu ==> "Clubs & Interests," ==> "disABILITIES," ==> "disABILITIES Message Center," ==> "General Discussions," ==> "List Topics," ==> "ALS (Lou Gehrig's Disease) CompuServe ALS Bulletin Board: click on Go, then type mda or mdaforum; read the disclaimer, then click on Proceed - that puts you on the MDA (Muscular Dystrophy Association) forum. From there you can browse the library or message sections - both of which have a separate ALS section. To get to the bulletin board, click on Messages, then on the ALS section. Prodigy- jump Medical support BB, subject: neurological, topic: A.L.S. ALS Digest, an e-mail subscription service that anounces developments, answers questions and provides information and discussions among Researchers, physicians, patients or other interested parties. To subscribe address e-mail to: bro@huey.met.fsu.edu (Bob Broedel) "Amyotrophic Lateral Sclerosis: A Comprehensive Guide to Management" Hiroshi Mitsumoto, M.D. And Forbes H. Norris, Jr., M.D., Editors Send to: DEMOS VERMANDE PUBLICATIONS - $39.95 + $4 p&h 386 Park Avenue South, Suite 201 New York, NY 10016 Tel: (800) 532-8663 Fax: (212) 683-0118 Managing ALS Manuals - $3 each I - Finding Help II - Muscular Weakness III - Breathing Problems IV - Swallowing Problems V - Communication Problems Write to: The ALS Association 21021 Ventura Blvd., Suite 321 Woodland Hills, CA 91364-2206 Video - "What is ALS?" - $15 Write to: The ALS Association 21021 Ventura Blvd., Suite 321 Woodland Hills, CA 91364-2206 Video - "A Brief History of Time" - Paramount Pictures A film about a genius & physicist, Stephen Hawking, and his remarkable accomplishments in the field of physics in spite of living with ALS for 30 years. Check your local Video Store. ALS Patient Support Group Visual Library Borrow tapes for up to two weeks TOPICS: Management of ALS, Home Care/Long Term Care, Legal/Financial Issues, Research in ALS, Special Speakers, Speech and Swallowing, Independent Living Write to: Norris MDA/ALS Research Center at California Pacific Medical Center 2324 Sacremento Street, Suite 150 San Francisco, CA 94115 Books "Love, Medicine & Miracles" Bernie S. Siegel, M.D. "Peace, Love & Healing" Bernie S. Siegel, M.D. "The Road Less Travelled" M. Scott Peck, M.D. "When God Doesn't Make Sense" James Dobson (3) ===== ALS Guide Part 4 - Drugs ========== Date : Thu, 7 Dec 1995 15:37:01 -0500 >From : PALSMD@aol.com Subject: ALS Guide Pt 4 - Drugs DRUGS RILUZOLE (Rilutek) At present, Riluzole is the only drug approved by the FDA for the treatment of ALS. It is also the only drug shown to extend the survival of ALS patients. In a phase III clinical trial involving nearly one thousand participants, the group treated with Riluzole showed a modest, but statistically significant increase in length of survival. One theory of the cause of ALS is that Glutamate, a neurotransmitter, accumulates to toxic levels around motor neurons causing cell death. Riluzole seems to do two things: slows the release of Glutamate from neurons and blocks the effect of glutamic acid on Glutamate receptors. Riluzole or Rilutek is manufactured by Rhone Poulenc Rorer, (RPR). For information about Riluzole, contact RPR at the below address or phone number. For information on the Rilutek Early Access Program, (EAP), contact the National Organization for Rare Disorders, (NORD), at the below phone number. Rhone-Poulenc-Rorer Rilutek Early Access Program (Rob Partridge) National Organization for Rare Disorders 500 Arcola Road Tel: (800) 459-7599 Collegeville, PA 19426-0107 Fax: (203) 746-8483 Tel: (800) RX TRIAL Tel: (800) 798-7425 NEURONTIN (Gabapentin) Neurontin is currently available by prescription for the treatment of seizure disorders. Investigators believe that it may have anti-Glutamate properties, but this hasn't yet been proven. Currently, Parke-Davis is investigating any beneficial effects. So far there is no evidence that Neurontin is effective in the treatment of ALS although, patients who have taken it report a sense of well being. For more information, contact: Dept. Of Neurology Attn: Amy Quinn, RN California Pacific Medical Center 3698 California Street, Rm 545 San Francisco, CA 94118 Tel: (415) 750-6261 Tel: (415) 750-6040 Fax: (415) 750-5022 BDNF (Brain Derived Neurotrophic Factor) BDNF is a nerve growth factor. It is a naturally occurring protein produced by the human body in small quantities. The BDNF being used for this study is a synthetic version produced by using recombinant DNA. Some experiments in animals have shown that BDNF helps injured motor neurons survive for longer periods of time. The first human tests on ALS patients indicated slower deterioration of breathing and possibly longer survival. For more information contact: AMGEN, Professional Services 1840 DeHavilland Dr. Thousand Oaks, Ca. 91320-1789 Tel: (805) 447-1000 FAX: (818) 865-3707 VITAMINS Many investigators believe that nerve cells may die as a result of oxidation injury. Although there have been no proven benefits to anti-oxidant therapy, interest has been somewhat renewed since the recent discovery of "the ALS gene," (in Familial ALS), near the gene for an enzyme, Superoxide Dismutase, responsible for protection against oxidation. The MDA Medical Advisory Committee recommends: Vitamin C: 1,000 mg 3 times a day ( 3 grams daily ) Vitamin E: 800 units 3 times a day ( 2,400 units daily ) Beta-Carotene 10,000 units 3 times a day (30,000 units daily ) MYOTROPIN or IGF-1 (Insulin-like Growth Factor) A naturally occurring protein that helps the nervous system recover from injury. It is thought to promote survival of motor neurons and enhance regeneration of damaged motor neurons. For more information contact: Cephalon, Inc. Assistant Director Corporate Communications Tel: (800) 797-0705 BCAA (Branched Chain Amino Acids) There is some evidence that treatment with BCAA (Leucine, Isoleucine, Valine) may slow the loss of muscle strength in Limb Onset ALS patients. More research is necessary due to the small number of patients studied so far. For more information contact: The ALS Association 21021 Ventura Blvd., Suite 321 Woodland Hills, CA 91364-2206 GDNF (Glial-Derived Neurotrophic Factor) For more information contact: AMGEN, Professional Services 1840 DeHavilland Dr. Thousand Oaks, Ca. 91320-1789 Tel: (800) 447-1000 Tel: (800) 772-6436 FAX: (818) 865-3707 CNTF (Ciliary Neurotrophic Factor) For more information contact: National Organization for Rare Disorders CytoTherapeutics Tel: (800) 999-6673 Seth A. Rudnick, M.D., ext. 2113 Fax: (203) 746-6481 or Elizabeth Razee, ext. 2132, Tel: (401) 272-3310 (4) ===== ALS Guide Part 5 - Treatment Centers ========== Date : Thu, 7 Dec 1995 15:52:31 -0500 >From : PALSMD@aol.com Subject: ALS Guide Pt 5 - Treatment Centers TREATMENT CENTERS Certified by the ALS Association "These clinical care facilities have been certified by The ALS Association (ALSA) as having met a rigorous standard of quality care for ALS patients. Each has a multidisciplinary team approach to provide a continuum of care as well as appropriate diagnostic capabilities." I don't use one of these facilities and believe I receive excellent care. It's important that you find a Neurologist experienced in the diagnosis and care of ALS patients, with whom you have a good relationship, whether or not they are at one of the such an important diagnosis. ALS Clinical Department of Neurology (Rup Tandan, M.D.) Fletcher Allen Health Care UHC Campus Department of Neurology 1 South Prospect Street Burlington, VT 05401 Tel: (802) 656-4550 Fax: (802) 656-2461 ALS Clinical Services Center of Hahnemann University ( Ted Tatarian, D.O.) Hahnemann University Hospital Broad and Vine Streets Philadelphia, PA 19102 Tel: (215) 643-5434 Fax: (215) 643-9307 ALSA Center, Desk S 90 Cleveland Clinic (Hiroshi Mitsumoto, M.D.) Cleveland Clinic Foundation 9500 Euclid Avenue Cleveland, OH 44195 Tel: (216) 444-5418 Fax: (216) 444-9401 Harry J. Hoenselaar ALS Clinic (Daniel S. Newman, M.D.) Henry Ford Hospital 2799 West Grand Blvd Detroit, MI 48202 Tel: (313) 876-2594 Fax: (313) 876-3014 Motor Neuron Disease Clinic (James W. Albers, M.D.) University of Michigan Hospital Department of Neurology 1324/0322 Taubman Center 1500 E. Medical Center Drive Ann Arbor, MI 48109-0322 Tel: (313) 936-9020 Fax: (313) 763-6545 Forbes Norris MDA/ALS Research Center at California Pacific Medical Center (Deborah Gelinas, M.D.-Michelle Murray) 2324 Sacremento Street, Suite 150 San Francisco, CA 94115 Tel: (415) 923-3604 Fax: (415) 673-5184 ALS Clinic (Janice Weisman, M.D.) Boston University Medical Center 720 Harrison Avenue, Suite 707 Boston, MA 02118 Tel: (617) 638-8456 Fax: (617) 638-8465 (5) ===== CEP347 ========== HEALTH NEWS DAILY Wednesday November 29, 1995 Cephalon: Company anticipates filing an IND in the next 12 months for another amyotrophic lateral sclerosis indication: CEP347 would be an oral ALS therapy, President and CEO Frank Baldino, PhD, tells Robertson Stephens Nov. 28. < parts deleted > (6) ===== Procysteine ========== HEALTH NEWS DAILY Tuesday November 28, 1995 Transcend Therapeutics: Phase I trial of glutathione-repleting agent Procysteine for treatment of amyotrophic lateral sclerosis is under way, the Cambridge, Massachusetts-based company announces Nov. 27. < parts deleted > (7) ===== ALS drugs ========== BIOTECHNOLOGY NEWSWATCH Monday November 6, 1995 About 75 companies have 118 medicines in development for diseases of the central nervous system, ranging from Alzheimer's disease to migraine headaches, according to a report from the Pharmaceutical Research and Manufacturers of America (PhRMA). About 44 of those drugs are aimed at Alzheimer's disease, amyotrophic lateral sclerosis and stroke -- conditions for which there are no effective treatments. Biotechnology companies are working primarily in multiple sclerosis, amyotrophic lateral sclerosis (ALS or Lou Gehrig's) disease, brain cancers and head injuries, according to the survey, which is based on government and industry information up to September 15, 1995. < parts deleted > In ALS, brain-derived neurotrophic factor (BDNF) from Amgen/Regeneron, and recombinant IGF-1 from Cephalon/Chiron are in late-stage development. Biotechnology General has a recombinant human CuZn superoxide dismutase in trials for the disease. < parts deleted > (8) ===== VisionKey eye-controlled communicator ========== Date : Sun, 17 Dec 1995 11:26:28 -0500 >From : af064@freenet.carleton.ca (Jan Heynen) Subject: VisionKey eye-controlled communicator The following should be of interest to persons with ALS who have problems communicating. VisionKey is sold for $2500 US plus shipping and a glasses frame that the user should obtain from their optometrist. VisionKey is an eye-controlled stand-alone communicator and keyboard substitute (or virtual keyboard) which enables the use of standard or special software applications on mainstream personal computers. It consists of a lightweight (60 grams, 2 oz) eyepiece mounted on glasses frames and a display/processing unit. It comes packaged in a briefcase for easy portability. The user sees in the eyepiece a chart with key words, or a 49 position keychart which appear to be at normal reading distance. The eyepiece also contains an eye tracker and this causes a green highlight to appear behind the word or character being looked at. After a brief delay, the selection is sent to the display unit for display on dual LCDs. The character can also be sent to a computer. In that case, the full 101 or Mac keyboard set is accessible. VisionKey normally operates by direct selection, but an alternative version is also available for those with impaired eye control. VisionKey can be powered from the wheelchair battery or AC mains and operates independently of head position or movements. The technology developed is simple yet elegant and has enabled a very cost-competitive product. For further information, send E-mail to the above address: af064@freenet.carleton.ca, call (800) 356-3362 Fax (613)596-4300 or write to: H.K. EyeCan Ltd. 36 Burland Street Ottawa (Ont.) K2B 6J8 Canada -- Have a good day! ||Jan Heynen ||af064@freenet.carleton.ca === end of als 232 === ALS Association (National Office) 21021 Ventura Boulevard, Suite 321 Woodland Hills, CA 91364 USA TEL 818-340-7500 FAX 818-340-2060 TEL 800-782-4747 (Patient Hot Line) E-M eajc27b@prodigy.com ALS Society of Canada 220 - 6 Adelaide Street East Toronto, Ontario, M5C 1H6 CANADA TEL 416-362-0269 TEL 800-267-4ALS (toll-free in Canada) FAX 416-362-0414 E-M alssoc@inforamp.net