Date: Tue, 20 Feb 96 16:20:29 EST From: Bob Broedel To: Stuart.Neilson@brunel.ac.uk Subject: Re: ignore please // test // =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#237, 30 January 1996) == == == == ------ 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 == == 1440+ 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 .. Riluzole/Rilutek 2 .. ALS News Release 3 .. myotrophin 4 .. Dressing Aids for PALS 5 .. branch chain amino acids 6 .. re: sick uncle 7 .. wheelchair accessible vans 8 .. Travel 9 .. ALS Family Member 10 . Creatine and Choline 11 . data retrieved from MEDLINE (1) ===== Riluzole/Rilutek ========== GROUNDBREAKING INTERNET APPLICATION INTRODUCES WORLD'S FIRST DRUG FOR LOU GEHRIG'S DISEASE CHICAGO, Jan. 18 /PRNewswire/ -- An innovative Internet application on the World Wide Web reached thousands of patients, caregivers, neurologists and health care professionals worldwide with the news that the first ever treatment for people with Lou Gehrig's disease (amyotrophic lateral sclerosis or ALS) is now available by prescription. Rilutek(R) (riluzole), developed by Rhone-Poulenc Rorer, Inc. (NYSE: RPR)("RPR"), of Collegeville, PA, is the first treatment for ALS since this fatal, neurodegenerative disease was first described 127 years ago. The way that RPR chose to break the news was innovative as well -- through a live, interactive "cyber chat" on the World Wide Web. The first-ever interactive Internet news conference for the pharmaceutical industry generated more than 14,000 hits in its first two hours on-line from sites in Costa Rica, France, Belgium and the U.S., according to Tim Bahr, President of America's House Call Network(TM) ("AHCN(TM)") (a division of Orbis Broadcast Group), the company that designed and managed the proprietary Internet application, "HyperChat." "We're developing the nation's first, nationally promoted, fully integrated, healthcare information system for consumers and healthcare professionals. The success of the Rilutek(R) announcement clearly demonstrates the potential of AHCN(TM) as a healthcare communications and education tool. When we consider that ALS affects an estimated 30,000 Americans, another 50,000 worldwide, we can only begin to imagine the potential reach of the system as we begin to communicate information on topics like heart disease or breast cancer that affect millions," Bahr said. Tuesday, RPR researchers, noted specialists, and ALS patient advocates fielded a variety of questions live on-line, and will continue to do so through e-mail at http://www.housecall.com. The interactive site includes product prescribing information, frequently asked questions, research, background, press releases -- and now, in fact, has more current data about ALS and Rilutek(R) than was previously available through any medium. "Our goal was to provide patients and healthcare professionals with important information on Rilutek(R) and ALS in a timely fashion," said Bob Pearson, Executive Director, RPR Public Relations. "We know ALS is a complex disease, so placing Rilutek(R) therapy in the proper context is a key objective. Also, since an essential part of our mission is to make sure people have access to this information, we decided to provide information via the Internet, since computer bulletin boards are a key vehicle for sharing information in the ALS Community." Ironically, prior to the blizzard of '96, the focus had been on a traditional news conference in Manhattan. The weather forced the cancellation of the news conference -- and pressure was on to use the AHCN(TM) system to accomplish the same goals through an audio teleconference and the Internet application. "Patients, doctors and news media could listen to the conference by calling a toll-free number, but interestingly, by a factor of more than ten, they preferred to get the news on-line. We think this is a milestone in medical communications," according to Bahr. RPR's efforts to get the news out about Rilutek(R) are mirrored by its efforts to get the product to market. "We are very pleased that people with ALS will be able to receive Rilutek(R) less than seven months after we filed a New Drug Application with the U.S. Food and Drug Administration," said Joseph C. Scodari, Senior Vice President, The Americas, RPR. Rilutek(R) will be available by prescription from a medical doctor. Treating physicians are encouraged to call 1-800-790-RTEC (7832) to obtain information about Rilutek(R) for their ALS patients; additional information is available in the on-line forum. America's House Call Network(TM) (Orbis-AHCN(TM)) was created by the Orbis Broadcast Group of Chicago, the nation's leading producer of healthcare-related television news and programming for consumer and professional audiences. The system, which is scheduled to roll out nationally this Spring, integrates traditional ways in which people receive healthcare information, such as television news and programming, healthcare industry advertising, and physician-distributed, patient education material with a comprehensive, interactive, on-line healthcare information, assessment and referral center that is being developed with the nation's leading healthcare organizations. In addition to being accessible through the World Wide Web at http://www.housecall.com, the system will soon premiere on the Microsoft Network and will be accessible to anyone with a touch-tone telephone through operator assisted linkage to the on-line information center. RPR, a global pharmaceutical company dedicated to improving human health, is one of several industry-leading healthcare companies and associations providing initial sponsor funding and content. For more information: Call Tim Bahr at 1-800-77-ORBIS, Ext. 155, or e-mail at tbahr@housecall.com. =================== CONTACT: Tim Bahr of Orbis Broadcast Group, 312-942-1199, ext. 155, or : fax, 312-942-9069, or Liz Moench of MediciGroup, 610-768-7722 (2) ===== ALS News Release ========== Date : Thu, 25 Jan 96 09:10:27 PST >From : tgach@ljcrf.edu (Terry Gach) Subject: ALS News Release Terry Gach Vice President, Resource Programs La Jolla Cancer Research Foundation La Jolla, CA 92037 (619) 455-6480, ex. 3204 NEWS RELEASE January 25, 1996 Contact: TEL (619) 455-6480 : : Terry Gach, x3204 : tgach@ljcrf.edu : : Nancy Beddingfield, x3209 : nbedding@ljcrf.edu BREAKTHROUGH IN LOU GEHRIG'S DISEASE Embargoed for release 5:00 PM Eastern Time On January 25, 1996 LA JOLLA, CA. -- Results from the laboratories of Dr. Dale E. Bredesen at La Jolla Cancer Research Foundation and Dr. Joan Valentine at UCLA reported in the January 26th issue of Science offer the first understanding of the initiation of an inherited form of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease. These results further suggest the possibility that existing, FDA-approved drugs, known as copper chelators, might prove useful as preventive therapy for this form of ALS. ALS is an age-dependent, neurodegenerative disorder which typically afflicts individuals in middle adult life, leading to paralysis and death within 3-5 years. One person in 10,000 is afflicted with ALS. Ten-15% of these cases are inherited and of these inherited cases, 20-25% are associated with mutations in SOD1, the gene that encodes human copper-zinc superoxide dismutase (SOD). Normally, SOD destroys toxic molecules called free radicals, keeping cells healthy. Surprisingly, despite the mutations many patients with Lou Gehrig's Disease were found to have normal SOD activity, leading to a mystery: why do these patients develop ALS? Drs. Bredesen and Valentine discovered that, whereas the SOD activity was frequently left untouched by the mutations, a new property was conferred on the SOD by these mutations, leading to the rapid aging and degeneration of the cells by oxidation (which is similar to rusting). Most importantly, this effect could be blocked by two different drugs, offering new hope for treatment. "I believe this is another important step in helping us to understand the pathogenesis of this terrible disease," said Robert Abendroth, chairman of the Research Committee of the ALS Association based in Woodland Hills, California. "Dr. Bredesen provides a hypothesis to the most frequently asked question by ALS investigators since the indication of the SOD1 link with familial ALS -- how does the mutant enzyme lead to ALS? Dr. Bredesen's answer is particularly significant because of its long range therapeutic implications. The ALS Association is especially pleased that two of its research grant recipients, Dr. Bredesen and the UCLA team of Drs. Joan Valentine and Edith Gralla, have collaborated on this important study." Dale E. Bredesen, M.D., is the Leader of the Program on Aging at the La Jolla Cancer Research Foundation. The La Jolla Cancer Research Foundation is an independent, non-profit research institute involved in understanding and controlling the biological processes of cancer and other diseases. The Foundation is one of 10 Basic Science Cancer Centers in the nation, so designated by the National Cancer Institute. More information is available from the La Jolla Cancer Research Foundation's home page: http://pines6.ljcrf.edu:6530/ ### (3) ===== myotrophin ========== TITLE: Cephalon stock falls as FDA seeks answers about drug DATE : 01/19/96; 10:29:50 NEW YORK (Reuter) - The stock of Cephalon Inc. plunged in heavy trading Friday after the company and its partner, Chiron Corp., said the government raised concerns about its trial drug for the treatment of Lou Gehrig's disease. < parts deleted > Cephalon had applied to the Food and Drug Administration in October to provide the drug myotrophin to patients on a compassionate basis, prior to formal approval. But the agency has questions as to whether results from a European trial of the drug supports an earlier test in North America last year, Cephalon said. The two companies said they have agreed to discuss the agency's concerns, which were not specified. They also agreed not to provide early access to the drug pending the outcome of those discussions. (4) ===== Dressing Aids for PALS ========== Date : Sat, 20 Jan 1996 10:27:29 -0500 >From : FDavitt@aol.com Subject: Dressing Aids for PALS I'm a ALS patient who's looking for info where to get clothing with Velcro closures or other easy to wear clothing. I have trouble with zippers, snaps, etc. I have found an aid for tieing shoe laces. Elastic shoelaces called STRINGERS are available by mail @ 3706 N.Ocean Blvd. #203, Fort Lauderdale, FL 33308 or by telephone @ 619/243-9315.. I'd appreciate any suggestions. Fred H. (5) ===== branch chain amino acids ========== >From : Warren Wood Subject: RE: ALSD236 ALS-ON-LINE Date : Sat, 20 Jan 1996 17:20:41 -0500 In an issue of Lancet, May 7, 1988, there was an article about a pilot trial of administering branch chain amino acids to ALS patients at Mt Sinai School of Medicine. Has anybody followed up with this study and wheteher there was any positive results with patients outside the original 22 in the study? Please write back to us. Marilyn Wood Thank you. woodw@interramp.com (6) ===== re: sick uncle ========== Date : Sun, 21 Jan 96 16:42:18 UT >From : "JOSEPH A. DiLANDRO" Subject: FW: SICK UNCLE WANG LEI MY NAME IS JOE D. A FRIEND OF MINE READ YOUR LETTER IN THE ALS DIGEST. HE IS NOT ON LINE, BUT ASKED ME TO SEND YOU THE FOLLOWING RESPONSE: THIS IS CLEARLY A COMPLICATED CASE. THE DIAGNOSIS IS SPASTIC PARAPARESIS, ETIOLOGY UNKNOWN. ALS IS UNLIKELY, BUT NOW ALS WOULD PROBABLY INVOLVE CRANIAL NERVES. THIS COULD BE MEYLOPATHY FROM C5-6 DISK PRESSURE ON SPINAL CORD., (I HAVE SEEN THIS) OR PATHOLOGY IN THE THORACIC CORD (THERE ARE NO MENTION OF ANY STUDIES ON THE THORACIC SPINE). MRI WOULD BE BEST. THE DIABETES MELLITUS AND LUMBAR STENOSIS COULD PLAY A ROLE AND ACCOUNT FOR THE LOWER MOTOR NEURON SIGNS (FASCICULATION'S). I DON'T KNOW HOW TO SORT THIS CASE OUT WITHOUT SEEING THE ACTUAL X-RAY AND PATIENT. DOUG POLK, M.D. DOUG POLK IS A NEUROLOGICAL SURGEON IN OKLAHOMA CITY, OKLAHOMA. HE IS ALSO AN ALS PATIENT. HOPE THIS INFO HELPS YOU. JOE DILANDRO (7) ===== wheelchair accessible vans ========== Date : Mon, 22 Jan 1996 17:41:01 -0500 >From : Mafreiman@aol.com Subject: wheelchair accessible vans or mini-vans I would like to know if anyone has any suggestions, comments or experience regarding the selection and purchase of a wheelchair accessible van or minivan. My wife and I have looked all over for information about this, but there doesn't seem to be very much around. We also need whatever information anyone might have about wheelchair lifts, since we've never had one, don't know what to look for, and have no ideas about prices. Any comments or suggestions would be appreciated. We can be reached at Mafreiman@aol.com Thank you for your time and assistance. Mike and Elsa Freiman (8) ===== Travel ========== Date : Fri, 19 Jan 1996 10:00:39 -0700 >From : billy@wko.com Subject: Travel I have ALS and I'm looking for somewhere to go on vacation. Would like to hear stories good or bad from other disabled travlers. You can E-mail me if you like. billy@wko.com (9) ===== ALS Family Member ========== Date : Sun, 31 Dec 1995 13:12:15 -0500 >From : Jenni Robertson Subject: als family member Dear ALS patient and family members, My sister lost a battle with als one and a half years ago. Boy, Jill was a brave lady. She left 2 wonderful boys ages 6 and 10 and a husband. I understand about the illness and I pray for each of you every day. I would love to write to you if writing is possible. I can give you some advice about different things such as eating, sleeping,etc. but most of all I can be understanding. As I said earlier, my prayers are with you and I would like to hear from you. Jenni sister of ALS patient Jill Huntley (10) ===== Creatine and Choline ========== Date : Wed, 17 Jan 1996 12:47:01 -0600 >From : robinh@airmail.net (Robin Hawley) Subject: Re: ALSD235 ALS-ON-LINE I am an ALS patient. A 45 year old female. I wondered if anyone out there has taken Creatine and Choline for muscle strength and growth. Please let me hear from you. Thank you, Robin robinh@airmail.net (11) ===== data retrieved from MEDLINE ========== >From : 'Jamie' W. Jamison Subject: data retrieved from MEDLINE: Biomedicine, 1990- (fwd) Date : Tue, 23 Jan 1996 16:20:40 -0800 (PST) This might be of interest to people reading the ALS Digest. > Author : Alonso-K. Medenica-R. > Title : Immunomodulation in the treatment of multiple sclerosis > : and amyotrophic lateral sclerosis: a model for autoimmune > : disorders. > Source : J-Natl-Med-Assoc. 1995 Aug. 87(8). P 561-8. > Journal : JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION. > Abstract: Seventeen multiple sclerosis (MS) patients progressing > under conventional therapy (average treatment duration: 3 > years) with performance status 3-4 (mean Disability Status > Scale [DSS]: 82) who demonstrated circulating lymphokine > inhibitor factors were selected for a monthly immunomodulatory > protocol using plasmapheresis, followed by 3 days of > human intravenous immunoglobulin, and low-dose > methylprednisolone, cyclophosphamide, interferon-a, and > interferon-g, as well as octreide. Twelve of the 17 patients > presented with visual problems, 12 had lower extremity weakness > or paraperesis/paralysis, and 6 had bladder/bowel dysfunction. > Following 4 months of therapy, 4 recovered completely, 7 showed > loss of paralysis/paraparesis, and 5 had improvement in lower > extremity weakness. One patient progressed (mean DSS: 51). > Lymphokine inhibitor factors declined in 14 patients with > concomitant normalization of circulating immune complexes. > Eight patients experienced rises in CD4 levels with > stabilization of CD8 levels. Hypotension and hypocalcemia were > observed during plasmapheresis. Twelve patients with > amyotrophic lateral sclerosis with poor performance status also > were studied. Four of the 12 improved with the regimen, whereas > six stabilized disease. Similar alterations in laboratory > parameters were described. The rationale for this approach is > discussed. > From my reading of the last paragraph the treatment described in the abstract was effective, in terms of reversing or stabilizing the progression of ALS, in 10 out of 12 (83 percent) patients. Perhaps this might be an effective treatment for those forms of ALS that seem to be caused by an autoimmune disorder. Jamie Jamison niteowl@u.washington.edu === end of als 237 ===