Date: Sun, 24 Dec 95 01:54:07 EST From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD233 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#233, 23 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 == == 1330+ 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: 1 .. New Book: PATHOGENESIS AND THERAPY OF ALS 2 .. procysteine 3 .. telephone briefing - Riluzole 4 .. polyglucosan body disease 5 .. some questions 6 .. Life After Life 7 .. Pre-Christmas advice needed - Sock warmers for ALS patients !? 8 .. re: Cyto Therapeutics Inc. Announcement 9 .. Revised RFD: sci.med.diseases.als (1) ===== New Book: PATHOGENESIS AND THERAPY OF ALS ========== PATHOGENESIS AND THERAPY OF AMYOTROPHIC LATERAL SCLEROSIS (Volume 68) Edited by Georges T. Serratrice, M.D., F.R.C.P. and Theodore L. Munsat, M.D. 1995/ 320 pages/ 37 illustrations / 33 tables / ISBN: 0-7817-0333-6 / $115 Lippincott-Raven Publishers; 227 East Washington Square; Philadelphia, PA 19106-3780. TEL 1-800-777-2295 / 1-301-714-2300, FAX 1-301-824-7390 E-mail: LRORDERS@PHL.LRPUB.COM, WWW: http://www.lrpub.com/lrpub/ Written by more than 60 international experts in research and clinical practice, this volume reviews current concepts and controversies on the pathogenesis, diagnosis, and treatment of amyotrophic lateral sclerosis. The section on pathogenesis examines various mechanisms that have been linked to ALS, including excitotoxic mechanisms, Cu/Zn superoxide dismutase mutations and free radical damage, autoimmunity, autoantibodies to calcium channels, and paraproteinemia. Close attention is also given to animal models, particularly the transgenic moses that expresses human superoxide dosmutase mutations. The section on diagnosis and clinical trails includes discussions of the subclinical signs of ALS, its natural history, and the key issues in clinical trial design. The section on therapy presents extensive data on neurotrophic factors, excitotoxic blocking strategies, and glutamate receptor antagonists, and also examines the role of the biopharmaceutical industry in developing new drugs for ALS. (2) ===== procysteine ========== TITLE : TRANSCEND THERAPEUTICS, INC. INITIATES PILOT CLINICAL TRIAL OF : PROCYSTEINE IN AMYOTROPHIC LATERAL SCLEROSIS DATE : 11/27/95 CONTACT: Beth McBride, Executive Assistant to CEO of Transcend Therapeutics, : Inc., 617-374-1200; or Michelle L. Linn, Senior Acct. Executive of : Feinstein Partners Inc., 617-577-8110 CAMBRIDGE, Mass., Nov. 27 /PRNewswire/ -- Transcend Therapeutics, Inc. today announced the initiation of a Phase I clinical trial to assess the potential of its glutathione-repleting compound, Procysteine(R), in the treatment of Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig's disease). "The rationale for the use of Procysteine(R) in ALS is based on evidence that glutathione depletion and nerve cell damage due to reactive oxygen species are associated with the disorder," said Hector J. Gomez, M.D., Ph.D., President and CEO of Transcend. "Our Phase I trial is a pharmacokinetic study designed to assess blood and cerebrospinal fluid levels of glutathione and Procysteine(R) in ALS patients." The ALS clinical program is part of a series of proof-of-principle studies to rapidly assess the potential of Procysteine(R) in a range of clinical indications. The studies are expected to provide a basis for selecting indications to advance into Phase II trials. These clinical studies complement Transcend's lead program to evaluate Procysteine(R) in the prevention and/or treatment of multiple organ dysfunction (MOD). Procysteine(R) is currently undergoing Phase II, dose-ranging studies in the MOD indication. In addition to ALS, the company recently began a pilot trial with Procysteine(R) in dermatitis and plans to conduct studies in the areas of cardiovascular and liver disease. ALS is a progressive, fatal degenerative disease of the voluntary motor system, which affects about 1 in 100,000 people. The median survival of patients with ALS is less than five years. Procysteine(R) is a cysteine prodrug designed to replenish glutathione, the body's principal mechanism for protecting against damage from reactive oxygen species. The clinical study will involve an assessment of glutathione levels and administration of Procysteine(R) over a 28-day period in 10- 20 patients with familial or sporadic ALS and in six healthy volunteers. Transcend Therapeutics, headquartered in Cambridge, Massachusetts, is a leading developer of pharmaceuticals to treat diseases where oxidative damage, cytokine dysfunction and inflammation play major roles. The Company's lead product, Procysteine(R), is in clinical trials to assess its potential against multiple organ dysfunction and is being assessed for other clinical applications, kidney and liver disease, and dermatologic conditions. CONTACT: : Hector Gomez : Transcend Therapeutics : 640 Memorial Dr. : Cambridge, MA 02139 : Tel: 617/374-1200 (3) ===== telephone briefing - Riluzole ========== TITLE : RHONE-POULENC RORER TO HOLD TELEPHONE BRIEFING ON ALS THERAPY DATE : 12/22/95; 07:56:26 SOURCE: PR Newswire The U.S. Food and Drug Administration (FDA) has cleared Rilutek(R)(riluzole) for the treatment of amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease), a progressive, fatal neuromuscular disease. Rilutek is the first drug shown to extend survival in ALS patients, and is the first treatment available to ALS patients since the disease was identified 126 years ago. Please join ALS experts, patients, advocates and representatives of Rhone- Poulenc Rorer (NYSE: RPR) as they discuss the implications of this new therapy on ALS research, treatment, and care. WHO: Jeffrey Rothstein, M.D. Associate Professor of Neurology Johns Hopkins University Topic: Overview of ALS and Rilutek Robert Miller, M.D. Chairman of the Department of Neurology Director, Forbes Norris MDA/ALS Research Center California Pacific Medical Center Topic: ALS - The Next Decade Joseph Scodari Senior Vice President, The Americas Rhone-Poulenc Rorer Topic: Innovative Patient Assistance Programs Mr. Ted Heine The ALS Association Topic: Personal Perspective Note: Jack Norton of Minneapolis, Minnesota, and Ted Heine of Waverly, Iowa will lead an interactive computer bulletin board chat room after the press conference. ==== = Jack Norton, E-mail: jackn7494@aol.com = Ted Heine, E-mail: TASM76A@prodigy.com ==== When: January 10, 1996 10:00 a.m. (EST) - 11:30 a.m. (EST) How : To participate in the telephone briefing, please call 1-800-294-2203 between 9:45 a.m. (EST) and 10:00 a.m. (EST) on January 10th. If located outside the U.S., please call (312) 864-5041. The press conference can be accessed on-line at the following Internet address: http://www.housecall.com Replay: To hear a replay of the briefing, please call 1-800-938-1105. Replay is available until 5:00 p.m. (EST) on January 16th. RSVP: Please call Jill Dosik at 212-886-3173 or Rob Partridge at 610-454-3890. Rhone-Poulenc Rorer press releases are available at no charge through PR Newswire's Company News On-Call fax service and on PRN's Web site. For a menu of available RPR press releases or to retrieve a specific release, call 800-758-5804, ext. 764050, or http://www.prnewswire.com on the Internet. CONTACT: Jill Dosik, 212-886-3173, for Rhone-Poulenc Rorer, or Rob Partridge of Rhone-Poulenc Rorer, 610-454-3890. (4) ===== polyglucosan body disease ========== I received a call from Judy Alpert. Her husband has been diagnosed as having polyglucosan body disease. It is rather rare, and until she convinced them to add it to their list, it was not included on NORD's list of rare disorders. She thinks it may be one of the diseases inherited by people of Jewish heritage. She was told that polyglucosan body disease was kind of like ALS. Judy is trying to locate medical experts who are informed about polyglucosan body disease. If anyone here has suggestions about who she should contact, please get in touch with her at: Judy Alpert 175 West 12th Street, Apt 15-D New York NY 10011 TEL 212-675-2915 evenings TEL 212-691-6587 daytime FAX 212-242-1250 (5) ===== some questions ========== Date : Tue, 28 Nov 1995 13:03:51 +0800 (U) >From : Susan Meacham Subject: Re: ALSD227 ALS-ON-LINE I have a couple of questions that I would like posted to all of our PALS. My dad was diagnosed in 1989 with ALS. It started in his legs and has progressed very slow. He has no use of his legs and gets around either in a wheel chair or electric scooter. The disease is now affecting his arms, they are very weak, although he can still feed himself and his throat - he has some difficulty swallowing. His voice is getting weaker too. My questions are: 1) Does ALS affect the bowels? 2) Does ALS affect the eyes? Dad has had diarrhea for about 5 weeks now, he has taken different medications but none seem to work. He has gone in for tests, but nothing shows up. He has started to complain about his eyes, his left eye blurs, he says it "won't focus properly." The doctor that he is seeing says he has heard of ALS affecting the eyes, but not the bowels. Any help is sure appreciated. Thanks. susan_meacham@baylor.edu ------------------------------ (6) ===== Life After Life ========== Date : Sat, 23 Dec 1995 17:34:58 -0800 >From : "John K. Valteris" : (by way of eaopp@ucla.edu (Edward Anthony Oppenheimer, M.D.)) Subject: Life after Life Dear Dr. Oppenheimer, Thank you for so eloquently stating a truth I've learned the hard way. ALS is not of necessity, by itself, a fatal disease. I hope you don't mind that I've copied your two recent letters on this topic in the ALS Digest to everyone I know who could be affected by your message. I was diagnosed with ALS four years ago, at age 44. I was happily married with a successful career as a business editor and writer. I had no interest then, nor now, in dying. My husband and I tried everything from accupuncture to biofeedback, from physical therapy to mega-vitamins. I was in the CNTF drug trial. By May of 1993, I could no longer walk, swallow food or breathe. I almost waited too long for a miracle, but agreed reluctantly to be trached and vented and have a peg tube. Now, more than two years later, I would describe myself as healthy as a horse, with a weird disease that has no effect on my ability to reason, love, plan, read or listen to good music. I communicate via computer using an infrared switch or people read my lips. This is not the life I envisioned, but it is not without quality. Whenever I hear that Dr. Kevorkian has helped another person with ALS commit suicide or someone I've met with the disease, even younger than I am, has died rather than try life support, my first reaction is "they just didn't understand or have all the information." Like you, I'm a great believer in the power of the carefully chosen word to effect change. Of course, the decision to be trached involves many considerations, not the least of which is cost. But, as you point out, if it is considered routine for SCI, why not ALS? My husband and I are not wealthy and have no other family in New Jersey, but I am able to live at home with 24-hour nursing care covered by insurance. Much support comes from the outstanding staff of the Greater Philadelphia Chapter of the ALS Association. It is possible to be an ALS survivor instead of just another victim. Dale O'Reilley Medford, N.J. (since I am unable to access the internet with my current scanning software, my son-in-law in Delaware is sending this for me.) ******************************* **John K. Valteris ** **Mechanical Eng. Dept. ** **University of Delaware ** **email: valteris@me.udel.edu** **phone: 302-234-2672 ** ******************************* (7) ===== Pre-Christmas advice needed - Sock warmers for ALS patients !? ========== >From : stewar1@ibm.net Date : Tue, 19 Dec 95 22:23:12 Subject: Pre-Christmas advice needed - Sock warmers for ALS patients !? My father was recently diagnosed with ALS and has found that his "bad" foot is getting *very* cold if he has been out for prolonged periods - Canadian winters :-( I know people that use heated socks in the winter to keep them warm (ie. for winter sports, hunting, fishing, etc.) Basically they are wool socks with a "D" cell battery connected to a wire which heats up the toe area. I thought it would be a great thing for my father. However, after I got them home I read a warning on the package that says that diabetics, and persons with extreme circulatory problems should not use the socks. I need to know whether or not my father should use these socks -or- with ALS does he fall into the "extreme circulatory problems" designation ? Any info would be much appreciated. Because this is a Christmas gift, time is of the essence - please email me directly. Happy Holidays everyone! Ross Stewart stewar1@ibm.net P.S. Don't forget to post your comments to news.groups re: the proposed newsgroup sci.med.diseases.als - the sooner the better! (8) ===== re: Cyto Therapeutics Inc. Announcement ========== Date : Sun, 17 Dec 1995 16:58:47 -0800 >From : afoster@access.victoria.bc.ca (Allan Foster) Subject: Re: Cyto Therapeutics Inc. Announcement While the announcement talked about the success of the new cell structure to deliver CNTF, I would like to know what the impact was on the 10 patients regarding their ALS? Was there any improvement? Also, will the Company be doing trials using other neurotrphic factors, e.g.BDNF or NT-3? As an ALS'er, I would appreciate any information that's available on the above. (9) ===== Revised RFD: sci.med.diseases.als ========== Date : Mon, 18 Dec 1995 17:19:51 -0500 (EST) >From : Jan Rodman Subject: Revised RFD: sci.med.diseases.als REQUEST FOR DISCUSSION (RFD) unmoderated group sci.med.diseases.als Proponent: Jan Rodman Follow-ups are directed to: news.groups This is a formal Request for Discussion (RFD) on the creation of a new world-wide unmoderated Usenet newsgroup, sci.med.diseases.als. Newsgroups line: sci.med.diseases.als Amyotrophic Lateral Sclerosis research and care RATIONALE: sci.med.diseases.als There is currently no usenet discussion group for the many persons interested in studying or affected by amyotrophic lateral sclerosis, more commonly known as ALS. In North America, it is also called Lou Gehrig=92s Disease. In South America, Europe, Australia and Asia, ALS is included in the group of neuromuscular diseases commonly known as MND (Motor Neurone Disease). Amyotrophic lateral sclerosis is a rapidly progressive, neuromuscular disease. It attacks the motor neurons responsible for transmitting electrical impulses from the brain to the voluntary muscles throughout the body. When these muscles fail to receive messages, they eventually lose strength, atrophy and die. There is no known treatment or cure. Except in some rare instances when an apparent prolonged remission seems to have occurred, ALS is at present generally accepted as a fatal disease. ALS cannot be *caught* -- it is not contagious. In 90% of ALS cases, it strikes people with no family history of the disease. 10% are classified as familial or inherited ALS. It may occur at any age, with the likelihood increasing as people grow older. ALS occurs equally in men and women. Because the disease frequently takes its toll before being positively diagnosed, many patients are debilitated before learning they have contracted ALS. The disease does not affect the senses -- taste, touch, sight, smell and hearing -- or the mind. . Education of healthcare professionals as to the nature of the disease is a priority. ALS wreaks a devastating effect on patients as well as their families. As they struggle to cope with the prospect of advancing disability and death, it consumes their financial and emotional reserves. It is a costly disease in its later stages, demanding both extensive nursing care and expensive equipment. The target population therefore includes not only researchers, but also people with ALS, their families, caregivers and healthcare providers. This proposed newsgroup would enable researchers and doctors from all over the medical and scientific community who are studying this disease to communicate via the ALS newsgroup, and could be invaluable help in the development of new concepts and ideas and in the dissemination of useful information to all persons concerned with ALS. The newsgroup would also give patients a forum to discuss the disease, and offer support. CHARTER: sci.med.diseases.als The proposed newsgroup, sci.med.diseases.als is intended for discussion about the many different aspects of ALS, its symptoms, latest treatment options, research concepts and ideas, as well as how ALS is experienced by patients, their caregivers, friends and family members, doctors and other medical professionals, or anyone affected by or involved with ALS. Anyone with an interest in ALS is free to post, in addition to the medical and scientific community. This newsgroup is interested both in providing an open forum for the exchange of medical and scientific information, which can be useful to all participants, and in fostering communication between people affected by ALS from all parts of the globe. Above all, we wish to encourage a supportive and open atmosphere for the free exchange of opinions and information. The following are examples of possible posting topics: = ALS research concepts, ideas and findings = new information and resources available about the disease = questions regarding any aspect of ALS = symptoms and problems arising from the onset of new symptoms = treatments and therapies, both conventional and alternative = problems in the medical community in regard to ALS = emotions, including fears and anxieties caused by this illness = social issues regarding this illness = related practical problems or solutions Commercial advertisements may NOT be posted to this proposed group. END CHARTER Jan Rodman, National Executive Director ALS Society of Canada phone: 416-362-0269 or toll-free 1-800-267-4ALS (4257) fax: 416-362-0414 e-mail: alssoc@inforamp.net === end of als233 ===