=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#94, 11 April 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 == == 220+ 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 .. Jack's letter to the President 2 .. Baclofen 3 .. new nursing list (1) ===== Jack's letter to the President ========== >From : jackn74940@aol.com X-Mailer: America Online Mailer Sender : "jackn74940" Date : Sat, 09 Apr 94 20:18:48 EDT Subject : Jack's letter to the President Bob, please review..On 8 April I passed a letter concerning ALS directly to the President. I would like everyone to call him to ask he respond to the letter and the questions - Thanks Bob - Our Quest Continues - Jack Norton Town Hall Meeting with the President of the United States - Last Friday I heard the President was coming to Minnesota for a Health Care Town Hall Meeting. People that wanted to be part of the TV audience had to call in questions for selection by the TV station. 4,100 calls came in. On Thursday I was notified that I would be one of the 100 to be in the audience. I knew that in an hour an half - 100 people would not all get a chance to ask a question, so having 20 years of military experience I developed Plan B. After going through all the security process we all waited to be seated before the President's arrival. Unfortunately, the TV sponsor said that all the seats were equally well positioned and that all questions would be randomly selected (NOT!) Then I found out the 100 in Minneapolis would be joined by Milwaukee, Detroit and Sioux Falls about another 150 people all vying for a question. When I got seated I was put way up in the last row of the audience farthest away from the aisle. It appeared that several names had already been selected and video tapes prepared on those people. About 8 out of the 100 in Minneapolis got to ask a question, and I was not one of them. In fact I was so disappointed that as the time wore down I realized there was no chance to ask our questions , I did an AL Bundy Head flop and my head went down to my chest in dejection - looks like I was falling asleep . The President decided to stay and shake all our hands, PLAN B was now to be executed. As he reached across the aisle to shake my withered right hand, I gave him a letter and the questions and said "Mr. President, from my family to you". No aides - he has the letter. I have posted the letter and the questions. Now folks, you can wait for a reply or carry the momentum forward and call, fax and write the President to respond. Have you friends call and write. Do it starting on Monday. Call and ask him to respond to Jack Norton's letter given to him in Minneapolis on April 8th. White House Switchboard is 1-202-456-1111; FAX is 1-202-456-2461. Maybe suggest he meets with Cindy and I while we are in DC. One on One discussion. It is up to you if we can make the PROD! heard. I delivered the message. The Quest Continues - Jack & Cindy Norton TARGETING! Jack's Hand delivered letter to the President of the United States! Dear Mr. President, Thank you for letting us have the opportunity to discuss health reform. I am writing this not knowing if I will be able to ask you any questions, but I have hope in my heart. I am obsessed with beating this disease. Everyday I spend 2-3 hours talking to ALS victims across the country on the electronic highway, we are no longer isolated. - (I use Prodigy. Maybe you or Vice President Gore could join us on the Bulletin Board.) I am enclosing my questions in case I was unable to talk to you. So many people are praying that Science will finally make the breakthrough that has alluded them for all these years. The process is slow and often uncompassionate. Even though the FDA has provisions for accelerating drug trials (FAST TRACK) and they also allow for compassionate access to life-saving experimental drugs, they say they cannot compel drug sponsors to provide the drug to those outside the clinical trials. We believe that the protocol needs to be changed to require that any drug company applying ( and therefore benefitting from expedited trials) for FAST TRACK status MUST offer compassionate access to the extent of their manufacturing capacity. I have promised hundreds of Bulletin Board participants that until I am no longer able, I will keep the PROD! (our name for the ALS support group) moving toward changing the process of drug trials and gaining them access to experimental drugs. We, the terminally ill, want the "CHOICE" to decide whether we want to take these drugs, while they are in Phase III clinical trials. You should also know that as long as 7 months ago, Dr. Mitsumoto of the Cleveland Clinic tested the use of two drugs, BDNF (AMGEN Pharmaceuticals) and CNTF ( Regeneron Pharmaceutical) simultaneously in an animal model. It arrested the progression of the disease! We still have not begun combination trials! DON'T LET THEM PROTECT US TO DEATH! Mr. President, Cindy and I, will be in Washington DC the 28-30th of April for an ALS Leadership conference at the Hyatt Crystal in Arlington. I must continue trying to change the system of providing Life saving drugs to the terminally ill, before I can no longer participate. I must know I did my best for myself, my family, and those thousands of Americans who no longer can fight for themselves, then if I fail, I will have no regrets. "When people are suffering and dying from a devastating disease, we cannot wait for all the evidence to come in - for all the i's to be dotted and all the t's crossed. We must be prepared to accept greater risks from a drug when greater benefits are possible." Dr. David Kessler - FDA commissioner Jack & Cindy Norton Questions for the President of the United States :Welcome to Minnesota Mr. President. My name is Jack Norton. I am 44 years old, married and a father of three daughters. In Oct. of 1992, I was diagnosed with ALS or Lou Gehrig's disease. It is a degenerative motor neuron disease that affects all the voluntary muscles in the body, including eventually speech, swallowing and breathing. Although the muscles die, the brain is alert and entombed in a dying body. Over 30,000 Americans have this disease. 5000 are diagnosed yearly and average life span is 3-6 years. Of the present living population over 300,000 Americans will come down with this disease. There is no cure or therapy. I came here tonight to share with you the plight of these terminally ill people and to ask you a four fold question as it relates to research and health care reform. First, Mr President will your plan allow the terminally ill access to life saving experimental drugs? Second, FDA regulations now allow for compassionate access to life saving drugs and yet they can not compel drug sponsors to offer them - can you look into that? 3) I am concerned that Research hospitals will not be able to continue clinical trials or teaching because they are more expensive to operate than the average hospital? and Finally, Mr President I'm concerned about the Breakthrough Drug Price Council. I believe that drug companies will slow down investment in high risk high tech drug development because of controls. Mr President are you aware of the Japanese model? It allows New Breakthrough drugs to be priced at high rates and also mandates that the existing established drugs undergo annual price reductions. This forces the drug companies to continue development because their base becomes less profitable. .................These were put in the President's hand April 8th by Jack Norton at the Town Hall meeting in Minneapolis Our Quest Continues - We need to mass our fires and target the President - He now knows. AMGEN, Synergen, Regeneron, Cephalon We Will maintain the pressure - The PROD! knows no Bounds.........Jack Norton (2) ===== Baclofen ========== Topic 1081 Baclofen bionet.neuroscience 10:12 am Apr 6, 1994 odin@gate.net [ Article crossposted from sci.med ] [ Author was odin@gate.net ] [ Posted on 6 Apr 1994 09:11:15 GMT ] Can someone tell me what it is exactly that baclofen does? Is it a relaxant or does it affect the firing of the synapses much like tegretol? I recently had it prescribed for tic deleroux in lieu of dillantin to be taken along with tegretol [which seems to be effective] and I would like to know how baclofen is expected to work with the tegretol? -Hank- Topic 1081 Baclofen Response 1 of 1 bionet.neuroscience 1:25 am Apr 7, 1994 wayne@phillips.boulder.co.us Mechanism of action/Effect: The precise mechanism of action of baclofen has not been fully determined. It acts mainly at the spinal cord level to inhibit the transmission of both monosynaptic and polysynaptic reflexes, possibly by hyperpolarization of primary afferent fiber terminals resulting in antagonism of the release of putative excitatory transmitters (i.e., glutamic and aspartic acids). Actions at supraspinal sites may also be involved. Other actions/effects: Baclofen has general central nervous system (CNS)-depressant actions. Absorption: Rapid and extensive but subject to interpatient variation. Also, the rate and extent of absorption may decrease with increasing doses. Protein binding: Low. Biotransformation: Hepatic; only about 15% of a dose is metabolized. Half-life: 2.5 to 4 hours. Onset of action: Highly variable; may range from hours to weeks. Time to peak concentration: 2 to 3 hours. Peak serum concentration: 500 to 600 nanograms per mL (ng/mL) (2.34 to 2.81 micromoles/L) following a 40-mg single dose; concentration remains above 200 ng/mL (0.94 micromoles/L) for 8 hours. Therapeutic serum concentration: 80 to 400 ng/mL (0.37 to 1.87 micromoles/L). Elimination: Renal; 70 to 85% of a dose is excreted unchanged within 24 hours. Small amounts may also be excreted via the feces. About 40% of a dose is usually excreted within 6 hours, and excretion is usually complete within 3 days; however, with chronic use the rate of excretion is subject to interpatient variation. (From US Pharmacopea) -- Wayne Phillips wayne@phillips.boulder.co.us Boulder PTSD Center, Boulder, CO (303)440-4599 (3) ===== new nursing list ========== Date : Fri, 8 Apr 1994 08:11:41 CDT Sender : NEW-LIST - New List Announcements >From : "Linda Q. Thede" Subject: NEW: NurseRes - List for Nurse Researchers / Nursing Research ----------------------------------------------------------------------- NurseRes on LISTSERV@KentVM.Kent.Edu NurseRes is a moderated listserv group established in April 1994 for the purpose of providing a world wide electronic discussion forum for nurse researchers. Pattered after "user groups" in which seasoned experts and beginners alike gain information from each other as well as gladly offer help to all, the group is intended as a place to ask questions, get answers, and float ideas for thoughtful commentary. Or, to find someone who might be interested in collaborative research. Anyone is welcome to join, but discussion topics it is hoped will be related (at least remotely!) to nursing research. To join this group, send a message to LISTSERV@KentVM.Kent.Edu (or LISTSERV@KENTVM on BITNET) The BODY of the message should be: sub NurseRes Yourfirstname Yourlastname Eg. sub nurseres Florence Nightingale Editor: Linda Thede LThede@KentVM.Kent.Edu == end of als 94 ==