Date: Sat, 7 Oct 95 23:56:02 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD218 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#218, 07 October 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 == == 1070+ 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 == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Editorial - Back Issues Sampler Diskette 2 .. ALS Research Grants 3 .. Drug Study Seeks ALS Patients 4 .. Ripken streak brings a look at illness that fell Gehrig 5 .. 750 Additional People with ALS Selected to Receive Rilutek 6 .. How to get Hawking's most recent articles? 7 .. ALS demyelination 8 .. Advice re Paris ALS person? 9 .. International Symposium on Innovative Therapies (1) ===== Editorial - Back Issues Sampler Diskette ========== To get a diskette with 80 of the most recent back issues of the ALS Digest, please e-mail me your mailing address. rgds,bro (2) ===== ALS Research Grants ========== Date : Wed, 04 Oct 1995 15:17:11 -0400 >From : alssoc@inforamp.net (Jan Rodman) Subject: ALS Research Grants Notice of 1996-1997 ALS Research Grants The ALS Society of Canada (Amyotrophic Lateral Sclerosis) is pleased to announce it will be accepting applications for research funding for 1996- 1997. Grants in aid of research are available primarily for basic research into causes of and potential treatments for amyotrophic lateral sclerosis (also known as ALS or Lou Gehrig's Disease). Please mail, fax or e-mail your request for application forms and guidelines to the address below or contact your Research Services/Grants Office. Please note that all completed applications must be received no later than 5:00 pm on January 31, 1996. ALS Society of Canada 6 Adelaide Street East, Suite 220 Toronto, Ontario M5C 1H6 Canada fax # : (416) 362-0414 e-mail: alssoc@inforamp.net For further information, contact: Jan Rodman, National Executive Director or Susan O'Neill, Manager of National Services ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Jan Rodman, National Executive Director ALS Society of Canada "We're fighting Lou Gehrig's Disease with everything you give!" 220 - 6 Adelaide Street East, Toronto, ON M5C 1H6 phone : (416) 362-0269 or toll-free in Canada 1-800-267-4ALS fax : (416) 362-0414 e-mail: alssoc@inforamp.net ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ (3) ===== Drug Study Seeks ALS Patients ========== TITLE : Drug study seeks ALS patients DATE : 09/26/95 SOURCE: The Press-Enterprise Riverside, CA Loma Linda University Medical Center is seeking patients with amyotrophic lateral sclerosis (Lou Gehrig's disease) for a major trial of a drug known as brain-derived neurotrophic factor. A meeting for those interested will be held at 5:30 p.m. Thursday at the medical center. In recent preliminary tests on 283 patients in the United States and Canada, those who took the drug had half the deterioration rate of breathing capacity as those who took a placebo. Patients with a clear diagnosis of ALS are eligible for this nine-month trial. Participants will receive free medication, physicals and lab testing. For further information on the meeting or clinical trial, call Marla Martin at (909) 799-5211 or Dee Moses at (909) 799-5037. (4) ===== Ripken streak brings a look at illness that fell Gehrig ========== TITLE : Ripken streak brings a look at illness that felled Gehrig BYLINE: Dr. Simeon Margolis DATE : 09/26/95 SOURCE: The Baltimore Sun During their coverage of Cal Ripken's record-breaking consecutive-game streak, the media constantly referred to Lou Gehrig's disease. I would like to know more about that disease. Amyotrophic lateral sclerosis, or ALS, the medical term for Lou Gehrig's disease, is a relentlessly progressive disorder caused by deterioration of the motor nerves (nerves that control the action of muscles) in both the brain and spinal cord. The first manifestations are typically weakness and clumsiness of one or both hands; but the symptoms may begin in almost any muscle, and most muscles are affected as the disease worsens. The muscle weakness is accompanied by a decrease in their size, stiffness and muscle twitches. There is no loss of sensation or pain except for possible muscle cramps. The disease eventually involves the tongue and muscles controlling swallowing and respiration. Death often results from respiratory failure. ALS is invariably fatal; the average lifespan after the onset of symptoms is two to five years. ALS most often begins between ages 50 and 60, and the disorder becomes more common as people grow older. Lou Gehrig developed ALS at an unusually young age -- less than 3 percent of people with ALS have symptoms before the age 35. ALS affects men about 50 percent more often than women, and it is not exceedingly rare. It is estimated that about one in 800 men in this country dies of ALS. An inherited genetic disorder is responsible for about 5 percent to 50 percent of the cases of ALS, and the defective gene responsible for this inherited form of ALS was identified in the past few years. In the great majority of patients with ALS, however, no other family members are affected and the underlying cause is completely unknown. Many different medications have been tried in an unsuccessful effort to find a treatment that would cure ALS or at least slow its progression. Some modest success has been achieved recently, and the Food and Drug Administration will soon consider approval of a drug (Riluzole) that has prolonged survival of ALS patients by 5 to 6 months in clinical trials. Dr. Margolis is professor of medicine and biological chemistry at the Johns Hopkins School of Medicine. (5) ===== 750 Additional People with ALS Selected to Receive Rilutek ========== PR NEWSWIRE Wednesday September 27, 1995 750 ADDITIONAL PEOPLE WITH ALS (LOU GEHRIG'S DISEASE) SELECTED TO RECEIVE RILUTEK(R) (RILUZOLE) VIA EARLY ACCESS PROGRAM; ACCESS PROGRAM IS FIRST EVER FOR ALS NEW FAIRFIELD, Conn., Sept. 27 /PRNewswire/ -- The National Organization for Rare Disorders (NORD) announced today that an additional 750 people with amyotrophic lateral sclerosis (ALS) were selected to receive Rilutek(R) (riluzole) in the first ever early access program for ALS patients. A total of 3,000 people with ALS have now been selected to receive Rilutek free of charge prior to its commercial distribution in the United States. Rilutek is the first compound shown to extend survival in ALS patients. In a continuation of the effort to expand the number of participating centers and make access to Rilutek through the early access program as convenient as possible, the number of sites has been increased from 120 to more than 200 during the last four weeks. "Rhone-Poulenc Rorer's (NYSE: RPR) sustained commitment to meeting the needs of people with ALS is truly commendable. The company has set a new standard of caring for other pharmaceutical companies to emulate," said Abbey Meyers, President of NORD. Michael Havlicek, President and Chief Executive Officer of the ALS Association, said "Rilutek is an encouraging step forward in the treatment of ALS. As other compounds move towards approval for use, early access to those therapies is keenly needed." The New Drug Application (NDA) for Rilutek was submitted to the Food and Drug Administration (FDA) on June 29, 1995. An advisory committee to the FDA reviewed the submission on September 18th, and voted to recommend to the FDA that Rilutek be approved. ALS is a fatal neurodegenerative disease affecting approximately 30,000 people in the United States and more than 70,000 people diagnosed worldwide. It attacks nerve cells in the brain and spinal cord, resulting in muscle paralysis and respiratory failure. Patients generally survive three to five years after diagnosis. NORD is a federation of voluntary health organizations dedicated to serving people with rare (orphan) diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service. CONTACT: Abbey S. Meyers of the National Organization for Rare Disorders, 203-746-6518 (6) ===== How to get Hawking's most recent articles? ========== Date : 02 Oct 95 17:42:20 EDT >From : KENT LEE WOODMAN <71043.2035@compuserve.com> Subject: ALS Interest Group input Hello everyone! 56 year old diagnosed last year, 7.5 years into long term version, still pretty mobile, and VERY interested in all the material herein! I noted in the local press the other day that our must illustrious "patient", noted international astrophysicist STEVEN HAWKING, who is now 30 years into ALS, got married the other day, for the second time! As if that were not enough, he has just published a paper or speech in which he has finally concluded that TIME TRAVEL IS POSSIBLE! When the scientific world lauds him and his concepts and studies as those of a modern day Einstein, this really means something. He should certainly be a model to us all, though when my time comes, I suspect I'll be checking out before I am totally dependant on everyone. Meantime, does anyone know where we can get the text of his most marvelous new document? It would certainly make for interesting reading, and be an insight to the rest of us on how the mind of a totally "incapaci- tated" ALS suffer can work. By the way, for those who have not yet read his book or seen his video, "A Short History of Time", it's an extremely interesting work. Should be able to get it at your video store. It plays on Cable from time to time as well. I'll close and look for a hint where anyone may know we can find his text! Cheers from Anchorage, Alaska!. -klw- (7) ===== ALS demyelination ========== Date : Sun, 1 Oct 1995 11:24:52 -0400 >From : 100752.2144@compuserve.com Subject: ALS demyelination of 1. Neuron On MRI we have seen repeatedly demyelination of the pyramidal tract in young adults clinically suffering ALS. The Phenomenon has been described in the literatur; however their is no explanation for that yet. Does anyone have new information on this issue? Hermann Zeumer MD Neuroradiology Hamburg UKE (8) ===== Advice re Paris ALS person? ========== >From: DolphinRLS@eworld.com Date : Fri, Sep 22, 1995 2:36 PM EST Subj : Advice Re Paris ALS Person? I think your ALSD data is priceless for a journalist friend and former college-mate now in Paris with neurological symptoms. I've known him 50 years. I have questions, but first an explanation that may explain some of them: --------- My younger son signed me up to receive ALSD, and I'm grateful for it. I am in the unusual position of having had 6 neurologists at a VA hospital diagnose me as having had MS in 1948 while at Washn.& Lee Un. in Virginia then. I attended W&L after my WWII combat service on U.S. submarines. My college friend knew of this illness. Only when my symptoms disppeared over about 3 months did these doctors (at the VA facility in Lyons, N.J.) change the diagnosis to "Severe anaphylactic reaction to penicillin involving the central nervous system, especially the motor nerves." (Really! I'd taken penicillin losenges, then available OTC. I now suspect both diagnoses were wrong. Then, in 1971, an internist and a neuro-surgeon in N.Y. diagnosed a condition of severe pain, numbness and muscular weakness in my right arm as ALS! (Yes, with pain.) They too were wrong. With a mylogram, (remember them?) they found a herniated, fractionated C1-T7 disc that took both an anterior and posterior fusion operation to repair but left me with partial right hand paralysis. (I've had several other mis-diagnoses--including peritonitis caused by a perforated appendix after stomach bouts of "indigestion. --------------- With this in mind, I would greatly appreciate any guidance or direction regarding my friend in France. He has seen two doctors at American Hospital who unequivocally diagnosed ALS. His symptoms include right leg drop foot, several falls, "burning" legs, "normal" reflexes, leg fascicula- tions "but not up and down." (Whatever that means). His symptoms began this Spring with 2 falls. He's had brain, spinal cord MRIs, spine puncture, EMGs, blood tests. He has recently seen neurologists Prof. Nigel Leigh MD, London, and Vincent Meninger, Paris. Dr.Leigh declined to sign my friend's Riluzole (NORD) papers because he reportedly said: "I'm not sure you have ALS." Menninger said --basically-- "You MAY have a form of motor neuron disease, but I expect I'll see you in five years in about the same condition!" -------------- THEN (please bear with me) I saw Dr. Lewis Rowland's Congressional testimony of 7/21 you sent. I read of what seems to be either an ALS- variation or ALS-like syndrome involving legs primarily, as "discovered" by Norman Latov at Dr. Rowland's, Neurological Institute at Columbia Presbyterian Hospital in N.Y. Dr. R's office told me to have my friend's doctor(s) fax his medical records to N.I. at C-P. However, my friend (and his wife) now seem to be in a denial-depression stage. He said: "I got so tired just flying to London and back." His wife said: "If somebody had a cure, I'd have him go anywhere, but what's the use of going all the way to NY just on a chance?" He's in his late 60's. He's not told his employer, "until diagnosis is sure." ************* SO, MY QUESTIONS:-Is ALS still so difficult to diagnose? Has Dr. Norman Latov found a new ALS? Is there now a blood test, as Rowland indicated? Spinal fluid test? Has anything been in JAMA, Neurology, NE Med Journal, Lancet? What is Europe's medical culture, e.g.--do they tell patients the truth, or are they in the "fairy-tales for old men" stage? Thanks for any help anyone can give or direct us to. (I fax him ALSD excerpts in Paris. He still doesn't want his name disclosed, or employer notified.) R. Leigh Smith, Jr., 225 E66 st., Apt.4C, NYC10021-6400 Fax (212)288-3175, Phone (212)861-2121 E-Mail: DolphinRLS@eWorld.com My son, Wilson, who found ALSD for me, is neslon@panix, if that's easier for anyone to send things to. (9) ===== International Symposium on Innovative Therapies ========== >From : "Scott R. Burger" Newsgroups: sci.med.pathology, sci.med, sci.med.cancer, bionet.cellbiol Subject : Meeting announcement -- INTERNATIONAL SYMPOSIUM ON INNOVATIVE : THERAPIES Date : 29 Sep 1995 23:26:47 -0700 Upcoming meeting -- Join your colleagues at the INTERNATIONAL SYMPOSIUM ON INNOVATIVE THERAPIES or the "ISIT Symposium" in Minneapolis, MN, USA just before the 45th annual meeting of the American Society of Human Genetics. On October 22-23, 1995 the University of Minnesota will be sponsoring this meeting which will bring together some of the leading academicians in gene therapy, cellular therapy, enzyme replacement therapy and other innovative therapies as well as representatives from industry, NIH and the US FDA The deadline for receipt of abstracts for platform or poster presentation is October 2nd. Because the ISIT Symposium immediately precedes the 45th annual meeting of the American Society of Human Genetics (also being held in Minneapolis), we anticipate a large representation from the human and medical genetics community. Meetings of the National Mucopolysaccharidosis Society, the Gorlin Symposium ("Bone and Its Dysplasias"), and the National Marrow Donor Program Council precede and overlap with this meeting, as well. If you have already made those 'non-refundable' airline reservations, check with your carrier to see how inexpensive it is to change flights (usually $25 - 50). If you need help, check with your travel agent, or ours: Carlson Wagonlit Travel (612) 379-8421. They will work out a solution. Check our Home Page on the Web for additional information: http://www.cme.cee.umn.edu/ You can also obtain additional information, or register, by contacting us: ISIT Symposium Office Continuing Medical Education University of Minnesota 615 Washington Ave SE, Suite 107 Minneapolis, MN, 55455, USA Call us 612-626-7600, or toll-free 800-776-8636 === end of als 218 ===