Date: Fri, 3 Feb 95 01:42:57 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#170 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#170, 02 February 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot'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. The ALS Digest is == == published (approximately) weekly. Currently there are == == 470+ 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 .. leg/body cramps 2 .. ALS drug information 3 .. Inquiry about anti-oxidants 4 .. Neuronitn report 5 .. speaker phone 6 .. Who makes antibody to BDNF? 7 .. ALS and Aluminum 8 .. Thank you (from Germany) 9 .. MDA REPORT - GDNF News Release (1) ===== leg/body cramps ========== Date : Thu, 2 Feb 1995 12:34:12 -0800 (PST) >From : Vonda Dorner Subject: Re: lou gehrig's disease Has anyone found something to help ease the leg/body cramps associated with ALS? --Vonda (2) ===== ALS drug information ========== Date : 02 Feb 95 11:52:34 EST >From : Manuel Mendoza <71621.1323@compuserve.com> Subject: ALS drug information I am Manuel Mendoza, a physician at the St. Luke Medical Center in Milwaukee Wi. Early next week I am presenting a paper on Journal Club which was published in the NEJM on a trial on riluzole. I have been trying to get more information on the cost availability and other related information about this drug. If anyone could point me in the right direction I would appreciate it. Manuel Mendoza, M.D St Luke Medical Center MIlwaukee, WI 414-649-6000 Pager 9924 Home 414-389-1626 ===== = Here is what I know. It is manufactured by a company named = Rhone-Poulenc Rorer. Here is their data: = = Bob Pearson, Public Relations Dept = Rhone-Poulenc Rorer = 500 Arcola Road = P.O. Box 1200 = Collegeville PA 19426-0107 = TEL 610-454-3872 = FAX 610-454-3813 = = Also, information about Riluzole should be available by calling = TEL 1-800-RX-TRIAL = rgds,bro ===== (3) ===== Inquiry about anti-oxidants ========== >From : Kasirer Katherine Subject: Inquiry about anti-oxidants Date : Mon, 30 Jan 95 11:22:00 EST My father, a physician diagnosed with ALS about seven years ago, is interested to know if anyone has had any experience with anti-oxidents. Any information would be appreciated. Thanks. (4) ===== Neurontin report ========== Date : Sun, 29 Jan 1995 15:03:30 -0800 (PST) >From : Leigh Redding Subject: Re: ALSD#168 ALS-ON-LINE I am an ALS patient, male age 54 with bulbar onset, who has been on Neurontin for going on four (4) months now. I was diagnosed in June of 1993. The Bulbar symptoms probably pre-dated the diagnoses by six (6) to eighteen (18) months, speech problems, swallowing, drinking difficulties and such. Who know when the onset really was. I also was part of OHSU's CNTF study until I had a lung go flat and ended up on a vent via a trach. Neurontin, the first two months were at a 900 mg/day rate, 300 mg tid, and for the last two months at a 1,200 mg/day, 300 mg qid. I have noticed only slight improvements/slowing down of existing defects. I find that I can swallow a bit better, again it might be mental in that I am concentrating on my mastications more, who knows. My capabilities walking are now limited to short excursions with a rest on the vent to catch back up. My hands have lost most of the gripping abilities, right worse than left. I notice more "apparent" finger dexterity but the strength has not improved. The dexterity could be my constant attempts have taught other muscles to take over? Regards, Leigh (5) ===== speaker phone ========== Date : Sun, 29 Jan 1995 12:24:04 -0500 (EST) >From : katherine sohier Subject: speaker phone I need to get a speakerphone for someone with ALS pronto. Does anyone happen to know of one with exceptionally good pick-up and clarity? Thanks, David Feingold@Sohier (6) ===== Who makes antibody to BDNF? ========== Date : Mon, 30 Jan 1995 18:58:56 -0800 Sender : Methods in Modern Neuroscience : >From : Marc Brande Subject: BDNF Ab: Who makes? Who makes antibody to BDNF (brain derived neurotrophic factor)? Thanks in advance. Marc C. Brande, M.S. SD3D Email List:3D Imaging San Diego 3D Imaging Group To subscribe/unsubscribe:listserv@bobcat.etsu.edu 3840 Camino Lindo To post a message:sd3d@bobcat.etsu.edu San Diego, CA 92122 Email:BRANDE@SDSC.EDU Voice:619-587-4830 (7) ===== ALS and Aluminum ========== Date : Tue, 31 Jan 95 15:11:25 MST >From : Bill Houston Subject: ALS and Aluminum Bob, my name is Bill Houston and Jerry Willingham is a very dear friend who has ALS. Jerry has ask me to subscribe to as much ALS information as possible. Jerry is very interested in ALS & ALUMINUM and ask me to help him post the following message on something like an ALS bulletin board: My name is Jerry Willingham. I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) on October 8, 1993. My independent research led me to find a relationship between aluminum and ALS. I had my city water tested for a paltry seven and a half dollars and found that the aluminum content was .23 milligrams per liter. Has anyone else who has ALS or knows someone who has ALS had their water tested. (8) ===== Thank you (from Germany) ========== >From : fu03c2gj@fub46.zedat.fu-berlin.de (Karl Mathias Neher) Subject: Thank you Date : Wed, 1 Feb 1995 13:27:41 +0000 (GMT) I'm a member of the ALS interest group for more than a year now. I entered the group because my brother-in-law was afflicted with the disease. He died on December 28, 1994. This happened approximately 3 years after he got his first diagnosis. For me, and for my whole family, it is difficult to accept that he's gone because we loved him very much. Although I was a passive member of the ALS interest group it was a great help and a big support for our whole family to experience that we are not the only ones who fight against this terrible disease. My family and I want to all members of the group for your help and your support. We wish you all the best! I will leave the university where I have worked for several years at the end of February. Therefore, I won't be able to further participate in the interest group because I will lose my e-mail address. Please delete my address from your mailing list. Thanks again and all the best to you. Karl Neher Berlin, Germany (9) ===== MDA REPORT - GDNF News Release ========== Date : 01 Feb 95 16:21:44 EST >From : Barry Goldberg <71154.330@compuserve.com> Subject: GDNF Release Below is the most recent press release from MDA regarding GDNF. -- -- -- -- -- NEWS FROM MDA Contact: Jim Brown, MDA Director of Public Affairs (602) 529-5317 NEW GROWTH FACTOR SHOWS PROMISE FOR MOTOR NEURON DISEASES TUCSON, Ariz., Jan. 26, 1995 -- A recently identified neurotrophic factor, a natural substance that protects nerve cells from destruction, shows greater potential as a possible therapy for amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease) and spinal muscular atrophy (SMA) than any similar substance so far tested, the Muscular Dystrophy Association announced today. The substance may also have relevance for Parkinson's disease. ALS and SMA are progressively paralyzing diseases that result from the death of motor neurons, muscle-controlling nerve cells. Parkinson's disease results from the loss of a different group of nerve cells that influence muscles. Last year, test-tube studies showed the substance, glial-derived neurotrophic factor, or GDNF, might be the most potent of this class of substances in saving motor neurons from destruction. In one type of test, GDNF was 75 to 100 times stronger than the next best factor the researchers checked. Today's studies, done in animals, confirm the effectiveness of GDNF in saving motor neurons. "Drug companies are conducting clinical trials using three other neurotrophic factors to treat ALS, which affects about 20,000 Americans and is usually fatal within five years," said Dr. Leon Charash, a neurologist and chairman of MDA's Medical Advisory Committee. "This is a very promising area of research -- the first thing we've had that looks like it might help treat central nervous system damage. Today's study suggests GDNF may have the greatest potential of all the neurotrophic factors for motor neuron diseases," Charash said. GDNF was first identified in 1993 and was added to a growing list of natural nerve-growth-promoting chemicals, or neurotrophic factors, that scientists have been finding since the 1960s. The study published in today's issue of the journal Nature is an investigation of GDNF's ability to protect motor neurons in the brain and spinal cord in two situations where these cells would be expected to die. MDA grantee Lucien J. Houenou said GDNF showed "the most profound effect" of any neurotrophic factor tested so far in prolonging survival and preventing shrinkage of motor neurons after they've been injured. Houenou is an assistant professor of neurobiology and anatomy at Wake Forest University's Bowman Gray School of Medicine in Winston-Salem, N.C. GDNF was also at least as good as any other neurotrophic factor in protecting nerve cells from a natural "weeding out" process of cell death that occurs during embryonic development, Houenou said. Houenou and others studied the effects of GDNF in chicks and mice. He noted that in a study by other investigators, published in November in the journal Science, GDNF was mixed with isolated motor neurons in the laboratory and was found to be 75 to 100 times stronger than the best factor that group had so far tested. "A lot needs to be done before this can be used in patients," Houenou said, citing a need to study the stability of the drug in the bloodstream, as well as possible side effects and hazards. His group is now testing GDNF and other substances in animal models of ALS and SMA. Studies by other research groups have suggested GDNF might be useful in Parkinson's disease, Houenou said. Earlier this month, MDA grantee Alex MacKenzie at Children's Hospital of Eastern Ontario in Ottawa, Canada, was part of a team that found a gene that may play a role in causing SMA, a disease in which motor neurons gradually die and children lose the ability to use their muscles. SMA, the most common genetic cause of death in newborns, affects some 20,000 Americans. About one in 40 people is a carrier for the disorder. According to MacKenzie, the gene his group found probably codes for a protein that protects motor neurons. If that's true, a flaw in the gene could cause the absence or malfunction of that protective protein, leaving motor neurons vulnerable to destruction in people with SMA. Houenou said he doesn't know whether GDNF or any neurotrophic factor could overcome the effects of a flawed gene. "The pathways used by genes to cause or prevent cell death may not be exactly the same as those used by trophic factors," he said, "but they may overlap." MDA is a voluntary health agency working to defeat 40 neuromuscular diseases through programs of worldwide research, comprehensive patient and community services and far-reaching professional and public health education. It supports more than 400 research projects around the world. The Association's programs are funded almost entirely by individual, private contributors. MDA -- Working to find the cure for neuromuscular disease === end of als 170 ===