Date: Mon, 10 Apr 95 03:57:08 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD185 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#185, 10 April 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 == == 620+ 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 == =============================================================== CONTENTS OF THIS ISSUE: 1 .. AMGEN ANNUAL REPORT 2 .. seeking recommendations 3 .. ALS/help request 4 .. ALS 5 .. Riluzole 6 .. Riluzole (more) 7 .. how much Riluzole is available? 8 .. Riluzole & England 9 .. Mike Ward (72567.400@compuserve.com) (1) ===== AMGEN ANNUAL REPORT ========== Date : Sun, 09 Apr 1995 14:11:47 EDT >From : UKRY13A@prodigy.com (MR JOSEPH L SNYDER) Subject: AMGEN ANNUAL REPORT Amgen's annual report released last week has the following quote on page 20 "Synergen's pipeline includes glial derived neurotrophic factor(GDNF) which is in preclinical development for Parkinson's disease and is expected to enter human clinical trials this year". Several highly respected research journals have indicated in the past year that GDNF SHOWS GREAT PROMISE AS ALS TREATMENT. Also note Amgen purchased Synergen in Dec 1994. WE NEED TO LET AMGEN KNOW THAT GDNF HUMAN TRIALS SHOULD BEGIN IN 1995 ALSO. Write Gordon Binder CEO OF AMGEN at 1840 DeHavilland Drive, Thousands Oaks, California 91320-1789, phone #805-447-1000. Better yet attend the AMGEN annual stockholders meeting on Tuesday, MAY 9TH,1995 at 10:30 a.m. PDT at the Regent Beverly Wilshire, 9500 Wilshire Boulevard, Los Angeles,California. I assume that animal toxicity studies of GDNF must be going well for AMGEN to expect human trials in 1995. Comments ? Joe Snyder Louisville Ky (2) ===== seeking recommendations ========== Date : Tue, 4 Apr 95 08:09:04 -0700 >From : robin@panther.chinalake.navy.mil (Robin Gardner) Subject: seeking recommendations Good morning, I was hoping that I might get some recommendations from others in the list. My husband was diagnosed a year ago with ALS, and I am starting to look for alternatives for clothing because he has so much trouble fastening his trousers. He refuses to wear sweatpants to work, so I need to find a source for pants that he can manage on his own. Can anyone recommend a mail-order source for men's clothing? In addition, I have explored the Apple MDR database (thanks to the 17 Feb 95 issue of the ALS Digest) but thus far I haven't found a source for arm supports to be used with the computer. In the CBS evening news story the other night, there was a woman who had the kind of support I'm looking for; it was positioned in such a way that it was easier for her to use her trackball. Thanks in advance for your help, and God bless. Robin Gardner robin@discovery.chinalake.navy.mil ------------------------------------------------------------------------- Robin I. Gardner, Senior Computer Scientist Boeing Information Services, Inc., Ridgecrest, CA 93555-0369 robin@discovery.chinalake.navy.mil or GARDNERR%SEEA.decnet@sunman.chinalake.navy.mil -- (619) 499-5085 __________________________________________________________________________ (3) ===== ALS/help request ========== Sandy Goetz in Reno, Nevada needs some help getting on-line. Her husband has ALS (for over seven years) and she is trying to join the network. They have an AST (Advantage) Pentium. They are trying to use NetCruise. They are using netcom.com and the e-mail address is: skygoetz@ix.netcom.com ... but they have not yet figuted out how to use it. Their telephone number is 702-323-1542. If any of you who live near her could schedule a visit with her to give a demonstration of how to get on-line, that would be wonderful. Or if you are a netcom.com subscriber who could help, please give her a call. They welcome any assistance that can be offered. BIG THANKS bro (4) ===== ALS ========== Date : Sun, 9 Apr 1995 02:45:42 -0400 >From : Aguja@aol.com Subject: als Dear ALS Digest: A close friend of mine has just been diagnosed with ALS and has been told by the medical community she has 3 to 5 years to live and that there is no treatment...only methods to alleviate eventual suffering. I can only hope, for her sake, that in the so-called non- traditional medical community, at least, there is some hope. In any case, I would appreciate whatever "news" you may have for me. Thank you. BSNeedle@AOL (5) ===== Riluzole ========== Source: THE HARRISBURG PATRIOT 04/06/95 Title : Lou Gehrig's drug offers hope Byline: Heidi Russell Credit: Associated Press PHILADELPHIA To most people, three months may not sound like a long time. To victims of Lou Gehrig's disease, it means a new lease on life. < parts deleted > Rhone-Poulenc Rorer Inc. of Collegeville, which hopes to market the drug under the name Rilutek, did not release statistics on how many patients in the study benefited, except that on average, they lived an extra three months. < parts deleted > Lou Gehrig's disease, known formally as amyotrophic lateral sclerosis, or ALS, is a nerve disease which robs people of muscle control, resulting in weakness and wasting. Each year it affects one or two of every 100,000 people in the United States. When the disease strikes the brain stem, which occurs in about 25 percent of all cases and is called bulbar-onset, the victim loses speech control and the ability to swallow. In the other 75 percent of cases, the condition is called limb-onset, in which the arms, ankles, legs and hands are affected first. < parts deleted > People usually live on average three to five years, although some have been known to survive for decades. < parts deleted > (6) ===== Riluzole (more) ========== Source: Pittsburgh Post-Gazette 04/05/95 Title : French drug may help ALS victims Byline: Byron Spice, Science Editor, Post-Gazette A treatment for the untreatable -- amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease -- may be at hand. The drug doesn't cure. It doesn't halt progression. But it does extend survival, if only modestly, its manufacturer said yesterday. < parts deleted > An ALS researcher for the University of Pittsburgh Medical Center said Pitt probably would be one of the first hospitals to get permission to use the drug on a limited basis. "Just the fact that you can affect the disease course is significant," said Dr. Michael Giuliani, the Pitt researcher. < parts deleted > Giuliani and other researchers suggest that successful treatment of ALS probably will require a combination of drugs, not riluzole alone. < parts deleted > Giuliani said Rhone-Poulenc had told him that Pitt would be part of the compassionate use program. "We've already had numerous calls to our clinic," he added. How much riluzole will be available and which patients will be given priority to receive it is unknown. Bob Pearson, a Rhone-Poulenc spokesman, warned that the company's ability to produce the drug initially would be limited. Though potentially effective against a number of central nervous system diseases, riluzole is not commercially available anywhere in the world. < parts deleted > Though the preliminary word on riluzole is encouraging, Giuliani said, its availability for compassionate use may make it more difficult to recruit or keep patients in other drug studies. A study at Pitt, for instance, is looking at the effectiveness of brain-derived neurotrophic factor, a substance that enhances nerve regeneration. Drugs such as this eventually might be used in combination with riluzole or other drugs, Giuliani said. (7) ===== how much Riluzole is available? ========== Source: THE FRESNO BEE 04/04/95 Title : Drug slows progression of Lou Gehrig's disease Byline: Newsday The experimental drug riluzole has shown some success in slowing progression of the devastating muscle-wasting Lou Gehrig's disease, researchers said Monday. < parts deleted > "The results represent an important first step" in the treatment of Lou Gehrig's disease, said Dr. Larry Powe, director of central nervous system research at Rhone-Poulenc Rorer. "After we finish analyzing the data, we will utilize all necessary resources to submit a drug application to regulatory authorities" to expand their trial. Only 900 patients worldwide -- 120 in the United States -- have received the small, white oblong pill, which is taken twice a day. The company has said it may have enough of the drug to treat about 2,500 more patients. < parts deleted > (8) ===== Riluzole & England ========== Source: THE TIMES OF LONDON 04/06/95 Title : High hope for drug;Medical Briefing;Body And Mind Byline: Dr Thomas Stuttaford THREE people die of motor neurone disease every day. Although as many people in Britain are dying of the disease as are of Aids-related diseases, public awareness of the condition was very low until actor David Niven developed it. At about the same time, the Duchess of York became patron of the Motor Neurone Disease Association, after the death of her publisher friend Sir Robert Cooke, MP. Other famous people who have recently suffered from it include Group Captain Leonard Cheshire, VC, Jill Tweedie the writer, and Don Revie, the football manager. < parts deleted > In other cases a patient may live for a much longer time than is predicted; in amyotrophic lateral sclerosis, one of the varieties of the disease, 10 per cent of patients survive for ten years. < parts deleted > Mr George Levvy, of the Motor Neurone Disease Association, says: "It is encouraging at last to have something which makes a difference. It gives hope that scientists may be on the right track, but how far this track leads nobody, as yet, knows. We look forward to the data being approved so that if it is, riluzole can be made more generally available." (9) ===== Mike Ward (72567.400@compuserve.com) ========== Source: CHICAGO TRIBUNE 03/31/95 Title : PARALYZED ENGINEER STILL WORKS WITH COMPUTER HELP Byline: Evan Ramstad, Associated Press. Column: EVENING. Reader. His eyes speak. They look out from a body that can't move. They see and understand the most complex device ever produced-the microprocessor, brain of computers. And they keep Mike Ward productive nine years after he developed amyotrophic lateral sclerosis, or ALS, known best as Lou Gehrig's disease. Ward is able to work four days a week as a physicist and engineer at Intel Corp., the largest maker of computer chips, because his computer has a camera that follows his eyes, which "type" by looking at letters on the screen. When he finishes a sentence and looks at "enter," a voice synthesizer speaks the words he wrote. This is how he carries on a conversation. Ward's eyes also enable him to use regular PC software, such as a word processor or e-mail, which keeps him in touch with colleagues and other disabled computer users around the world. Ward, a 49-year-old father of two, is probably one of the most extremely disabled people at work in the nation today. He cannot talk or eat. An artificial ventilator helps him breathe. It is sweet irony that he remains active because of innovation in high technology, including, in part, his own work. But it hasn't been easy. "In general, I have had to find this equipment on my own," Ward said in an interview in which he spoke through his computer. "I searched and experimented to find what worked. I have pushed people to develop what I need." He is like tens of thousands of people with disabilities who are assisted by personal computers. They form a market that's become so large that a few computer companies, such as IBM and Digital Equipment, have developers and marketers solely devoted to it. Ward stands out, though, because of his own contribution to keeping PCs on an ever cheaper and more powerful path. He was the key creator of a technique that has saved time and tens of millions of dollars for Intel and other companies. Known as ion milling, it can be thought of as microsurgery in which the scalpel is a beam of ions and the patient is a circuit 1-100th the width of a human hair. The process is used while testing a new chip design and allows a manufacturer to remove or change a circuit that is believed to be defective without redoing the entire chip. Previously, to be sure that a circuit was responsible for a defect, a new chip would have to be made with everything the same except the circuit. That took weeks, cost a lot, and, with new generations of chips advancing into the millions of circuits, becoming impractical. "This technique that Mike has developed has paid off handsomely," said Casey Bennett, who works with Ward in failure analysis and lab design at Intel. "It's an industrywide standard now by which people do circuit modifications." Ward began working on ion milling after ALS set in but before it paralyzed him. Now, typing with his eyes, he edits a quarterly newsletter on failure analysis and reviews designs of Intel's production labs. "He's a pretty remarkable individual," said Ron C. Smith, the manager who leads the Intel Technology Development Group. "I personally probably couldn't do what he's doing." ALS is a condition in which nerves that control muscles progressively die, leaving the muscles useless. For Ward, it began with the loss of his voice nine years ago. A few years later, he began using a wheelchair. For the past two years, he has been fed artificially and needed the ventilator to breathe. In 1993, he got a system called Eyegaze attached to his PC. It follows his eyes by shining an infrared beam on them, then measuring the angle as the beam reflects off his pupils when they look at a monitor. Ward said he is fortunate because Intel has paid for the $25,000 in accessories and modifications to his PC that allow him to still work. The camera is too big to work with a portable computer. So, away from the office, friends or relatives hold up a piece of cardboard pointing to letters until he blinks to spell out what he wants to say. "Most people cannot buy equipment because there is little state or federal help," Ward said. "Insurance will not buy this stuff." === end of als 185 ===