Date: Thu, 3 Nov 94 08:23:44 EST From: Bob Broedel To: Stuart.Neilson@brunel.ac.uk Subject: Re: ALS Interest Group List =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#124, 15 September 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 == == 330+ subscribers. The ALS Digest is published weekly. == == == == 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 .. Editorial -- Thanks 2 .. conference announcement 3 .. swallowing 4 .. HELP ME! 5 .. ALS Digest 6 .. als 7 .. Stephen Hawking's Program 8 .. Polio List 9 .. neurontin 10 . BDNT / NT-3 (1) ===== Editorial -- Thanks ========== Many thanks to Sharon Barker. She is Editor of the INFORMATION EXCHANGE BULLETIN, which is published by the INTERNATIONAL ALLIANCE OF ALS/MND ASSOCIATIONS (P.O. Box 246; Northampton, NN1 2PR UNITED KINGDOM; TEL +44-604-250505, FAX +44-604-24726). The July 1994 issue mentions our network and gives readers our e-mail address . (2) ===== conference announcement ========== 5th International Symposium on ALS/MND. November 7th-9th, 1994. It will be held at Noordwijk, Holland, under the auspices of Vereniging Spierziekten Nederland. For more information please contact the conference organizer: Mary Pearson; Motor Neurone Disease Association UK; P.O. Box 246; Northampton NN1 2PR UNITED KINGDOM; TEL +44-604-250505, FAX +44-604-24726. (3) ===== swallowing ========== Date : 11 Sep 94 23:25:01 EDT >From : wayne phillips <70303.173@compuserve.com> Subject: swallowing swallowing pills and capsules I've found taking pills and capsules with applesauce makes them much eaiser to swallow. Wayne Phillips 70303.173.compuserve.com (4) ===== HELP ME! ========== Date : Mon, 12 Sep 1994 17:58:57 GMT Sender : "Clinical WANS: Design & Usage" : >From : "Leonid N. Koshek" Subject: HELP ME! HELP ME ! I'm a docter. I'm 47. I have spinal amyotrophic lateral sclerosis or disease of Charco or disease of motor-nerve. Give one's consent for experiment! Address: Baluyev Sergey Ukraine 286032 Vinnitsa Repin street 18-176 t. (0432) 35-94-52 --- Best regards, Leonid Koshek. | Tel/fax +7 0432 279675, +7 0432 438528 sompany ATM. Company LEONET. | E-mail lk@atm.vinnica.ua (5) ===== ALS Digest ========== Date : Tue, 06 Sep 94 19:59:33 MST >From : "gnicholas" To : Hchapnick@aol.com Cc : bro@huey.met.fsu.edu Subject: ALS Digest My name is Grant Nicholas. I too am a subscriber to the ALS DIGEST. I have take the time to collect the Digests into volumes of 25 digests each, and for the first three volumes, have indexed the digests. I've done this with WordPerfect 6.0. The nice thing about WP 6.0 is that it will export (write) files in nearly any word processor format, so I can sent the file to some one far away in a file that their word processor will like and understand. I am a member of America On-Line, GrantN6077, and am willing to send these files to you if you are interested in them. I need to know if you are familiar with DOS, and PKZIP, a DOS program to compact files. If you are interested, you can contact me via e-mail on the Internet at gnicholas@lanl.gov, or at the above AOL address. If you respond via AOL, there may be a delay in my answering, as the growth of the system has limited my ability to log on when ever I want to, so I generally try longer on the weekends. If I'm talking too fast, or too slow, for your experiecne and abilities, let me know, I'll try to adjust accordingly. Regards, Grant (6) ===== als ========== Date : Wed, 7 Sep 1994 20:51:58 -0700 (PDT) >From : Roman Stadtler Subject: als Dear Bob; I spoke with you briefly once before. This is to resume our conversation and to explain my recent absence. In the March 3, 1994 issue of the New England Journal of Medicine, there is a review of neuroexcitatory transmitters. The authors conclude that glutamate is unable to enter the cell regardless of extracellular glutamate concentration, due to intracellular ionic balance. Therefore, glutamate research is useless in regard to ALS. There is an illustration with the article showing three different clacium receptors. The middle receptor uses aspartate and glycine as the activators to allow Ca to enter the cell. There is a constriction channel which uses 2,3-benzodiazepines such as Valium and Oxazepam. Prior to reading the article, I had advanced vesiculations on my face and tongue. Since taking Valium (5-10 mg every 4 hr), the vesiculations have disappeared. Oxazepam (30 mg per night) has allowed me to sleep through the night and, I believe, helped with the vesiculations. Please note that I am on a ventilator. Valium can depress breathing and should be used only under supervision. In ALS, the basic mechanism is one of Ca being allowed to flow unrestricted into the cell, killing the cell. This is due to antibodies being produced which interfere with the normal function of the Ca channels. ALS is an immune disorder, not a neurological disorder. Dr. Stanley Apel, a neurologist at Baylor University, has discovered a form of IgG (one of the most common immunoglobulins) which is turning on those Ca receptors so that they are locked open, allowing an unrestricted Ca flow. He has injected serum from affected people into unaffected animals, which immediately developed the same symptoms. This is almost certain proof that ALS is an autoimmune disease. IgG is also mentioned in the NEJM article I mentioned above. Immunosuppression of ALS patients by deactivation of the thymus gland has been ineffective. We now know that antibodies are involved, which means that B cells in the bone marrow which are producing them need to be isolated and targeted for removal. A device could be patented wherein anti-antibodies (produced by a melanoma or hybridoma) could be attached to glass or plastic beads, and a patient's blood could be run through them, much like a kidney dialysis machine. The antibodies would be trapped on the beads, slowing the progress of the disease. Another possibility would be to produce a vaccine or an antibody administerable by injection which would attack the renegade B cells. Still another area for exploration is the fact that thymic T suppressor cells are for some reason not suppressing these B cells. It is vitally important to understand that ALS is an autoimmune disorder and that immunologists need to take a leading role in the search for the primary cause. Neurologists are only able to track the damage. You mentioned that a Joe Wipke has developed a computer program, called Invention, which is able to custom-design new drugs when given the parameters of a receptor. Another thing which has recently come to my attention, in an early 1994 issue of Scientific American, is that a research team was able in six months to find a specific chemical to treat an autoimmune disorder. Using conventional research methods, this development would have taken a huge research team two to three years. By use of computer modeling, they made a quantum leap in R & D. It is this sort of new technique that must be employed to rapidly find a treatment for ALS. I would like to receive any past or future issues of your magazine. I regret that I broke contact with you when I developed pneumonia and was hospitalized. I now have a tracheotomy and am unable to type. I feel a need for people with ALS to mobilize as a group to act in a way to make effective R & D happen. At the present, my computer is off line. I can be reached care of the Apple Valley Adult Family Home, 411 Main Street, Everson, WA 98247. (206) 966-0914. Best Regards, Robert Ray FDM792 (7) ===== Stephen Hawking's Program ========== Date : Mon, 12 Sep 1994 11:16:14 EDT Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3594 ========================================================================== To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send electronic mail to Bill McGarry at the following addresse: wtm@bunker.afd.olivetti.com Bill McGarry (Moderator) (203) 926-6187 ---------------------------------------------------------------------------- Subject: Stephen Hawking's Program >From : rlambert@sipi.usc.edu (Russell Lambert) Dear L-HCAP subscribers, Several people who have met my father have suggested that we set up a system like the one that Stephen Hawking uses, in order to help him communicate better. I have searched for information about the software that Hawking uses with only partial success. One computer magazine said that Hawking's program is called "Words Plus", but I haven't been able to find it anywhere. A biography on Mr. Hawking says that the program is called "Equalizer" and it was developed by Walt Woltosz. I've had no luck in tracking this down either. Does anyone know of an address where I can write and find information about these programs? Does anyone know if there is such a thing as an oversized keyboard? Thank you, Russell Lambert rlambert@sipi.usc.edu (8) ===== Polio List ========== Date : Wed, 14 Sep 1994 16:02:28 CDT Sender : NEW-LIST - New List Announcements >From : RMAURO@delphi.com Subject: NEW: POLIO - Polio list POLIO on LISTSERV@SJUVM.STJOHNS.EDU The POLIO list is for persons who have Polio or who live with or work with persons with Polio. It's free! Here's what we'll be talking about: 1. We can discuss what Polio is. 2. We can talk about how Polio has effected us. 3. We can share ideas about how our doctors are treating our symptoms. 4. We can talk about new therapies, new drugs and their side effects -- and their effectiveness, or lack thereof, in treating the symptoms of Polio and Post Polio Syndrome. 5. You can list your local Post Polio Support Group here and even upload the highlights of the minutes of your last Post Polio Support Group meeting if you feel those highlights can help others learn more about Polio and Post Polio Syndrome and ways to live with them. 6. We can also share reviews on books about Polio and Post Polio Syndrome. 7. Finally, we can get to know each other and help each other with our mutual friendship and support. To join the Polio List, send e-mail to: listserv@sjuvm.stjohns.edu with the BODY containing the message sub Polio yourfirstname lastname Eg. sub polio Jane Deer Owner: Robert Mauro rmauro@delphi.com (9) ===== neurontin ========== 30-AUG-1994 19:48 Warner-Lambert up on takeover rumors MORRIS PLAINS, N.J. (UPI) Shares of Warner-Lambert Co. continued Tuesday to gain on takeover speculation in the wake of American Home Products' pending $9.7 billion buyout of American Cyanamid. Warner-Lambert, whose best known product lines are Rolaids and Listerine, was up $5.625 to $86.75 a share on the New York Stock Exchange, well above its 52-week low of $60. The company said last year it wanted to focus its resources on products with key growth prospects, including its Alzheimer's drug Cognex; cardiovascular drug Accupril; and anti-epilepsy drug Neurontin. ========= (10) ===== BDNF / NT-3 ========== AMGEN AND REGENERON ANNOUNCE IND FOR NT-3 IN PERIPHERAL NEUROPATHIES THOUSAND OAKS, Calif.--(BUSINESS WIRE)--Sept. 13, 1994--Amgen Tuesday announced the submission of an Investigational New Drug application (IND) to the Food and Drug Administration on behalf of Amgen-Regeneron Partners to initiate human clinical trials of neurotrophin-3 (NT-3) in peripheral neuropathies. Peripheral neuropathies are a class of common neurological disorders that may involve a variety of symptoms including weakness, numbness, tingling and loss of sensation which may be caused by certain forms of cancer chemotherapy and are common in patients with diabetes. Naturally occurring NT-3 is a protein important for the survival and maintenance of certain sensory nerves, which are responsible for transmitting impulses from the receptors in the muscles, joints, skin and other sense organs, to the spinal cord and brain. When these sensory neurons are injured or die as a result of disease or chemical toxins used in some forms of chemotherapy, symptoms of peripheral neuropathy may occur. Patients who develop a sensory peripheral neuropathy may be functionally impaired due to nerve damage. NT-3 also has demonstrated activity on motor neuron survival in a number of experimental systems. ============ In July 1993, Amgen and Regeneron announced an IND filing to conduct clinical trials of brain-derived neurotrophic factor (BDNF) in patients with amyotrophic lateral sclerosis (ALS). A phase I/II clinical trial with BDNF is ongoing. Amgen (NASDAQ:AMGN) is a global biotechnology firm that discovers, develops, manufactures and markets human therapeutics based on advanced cellular and molecular biology. Regeneron (NASDAQ:REGN) is a leader in the discovery and development of biotechnology-based compounds for the treatment of neurodegenerative diseases, peripheral neuropathies and nerve injuries. CONTACT: Amgen Inc., Thousand Oaks Sarah Crampton, Director, Investor Relations and Corporate Communications, 805/447-1659 or Amgen Inc. David Kaye, Manager, Product Communications 805/447-6692 or Regeneron Pharmaceuticals Inc., Tarrytown Selena Chaisson, Manager, Corporate Finance, 914/347-7000 == end of als 124 ==