=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#101, 19 May 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 == == 240+ 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 .. request for help with report on ALS 2 .. request for info re ALS 3 .. 8th month of CNTF trials 4 .. thoughts on ALS Association and Riluzole and Neurontin 5 .. re BDNF 6 .. re BDNF (more) 7 .. media list - Internet 8 .. Myotrophin, etc. 9 .. biomed - Internet (1) ===== request for help with report on ALS ========== >From : Henry Gabb Subject: Can I post something in your newsletter? Date: Thu, 19 May 94 17:58:27 METDST My wife is a science/medical writer and has been contracted by Rhone-Pollenc to do a report on ALS diagnosis. Would it be possible to pose some questions to your readers? If so, I am including a copy of the letter as she has written it. I am not affiliated with Rhone-Pollenc and my own research is not related to ALS. Thank you. +---------------------------------------------------------------+ | Henry Gabb (henry@ibpc.fr) | | Institut de Biologie et Physico-Chimique | | 13, rue Pierre et Marie Curie | | Paris 75005, FRANCE | | (33 1) 43 25 26 09 | +---------------------------------------------------------------+ Dear Readers, I am a science/medicine writer currently working on an article about ALS. So far, I have compiled an extensive body of information regarding the pathophysiology, possible causes, and available treatments of ALS. However, I know little about the patient's perspective. To those of you who read this newsletter and have been diagnosed with ALS, I would like to pose the following questions: 1. What prompted you to see a physician? What were your first symptoms? 2. What types of tests did the doctor perform to diagnose ALS? How did the doctor tell you that you had ALS? What types of treatments did the doctor prescribe? 3. What was your experience when you were diagnosed with ALS? What was your first reaction? How did you tell your friends and family? I would also welcome responses from physicians who treat ALS patients. If you wish to respond, you may do so either by e-mail to henry@ibpc.fr (it's my husband's address but he will pass it on to me), by fax at (33 1) 42 46 30 42 or by postal mail to: Mary GABB c/o A&A 40, rue de Paradis 75010 Paris, France Thank you very much for your time. (2) ===== request for info re ALS ========== Date : Mon, 16 May 1994 16:46:58 -0700 (PDT) >From : Johnny Takahiro Kurokawa Subject: information on Lou Gehrig's disease I am a student at UCI in California doing a report on amyotrophic lateral sclerosis. I was hoping you can provide me with the following information: 1) is the SOD gene the gene for ALS familial or juvenile, and 2) do you have the acsession number for the gene or cDNA. Thank you for your cooperation in this matter. Sincerly , Johnny Takahiro Kurokawa (3) ===== 8th month of CNTF trials ========== Date : Tue, 10 May 94 16:33:25 EST >From : "Mike Doliton" Subject: 8th month of CNTF trials at St. Vincent's in New York I just got back from my 8th month testing on CNTF. My test scores were unchanged from the last testing. I did better on the manual dexterity testing. Putting pegs in the holes. I got 17 pegs in. Usually its 12 or 13. The doctor was amazed. I said it might be the result of taking Neurontin. This is my second week on Neurontin. My speech could be better but she understood almost everything I said without my assistive device. Too early to tell. But I'm inspired by the test results. Does anyone else have any positive results about taking Neurontin? The people on Prodigy are excited about it. Some people are showing some improvement as I had indicated in previous notes. Neurontin is unproven as a Glutamate Antagonist. No one should start using it believing it will help improve muscle strength in ALS patients. It is in test by Dr. Munsat in Boston. I am trying it as an experiment. It has been proven safe as an Anticonvulsant drug. So, go carefully. Regards, Michael R. Doliton Sony Medical Systems Division (4) ===== thoughts on ALS Association and Riluzole and Neurontin ========== Date : Thu, 19 May 94 10:06:19 EST >From : "Mike Doliton" Subject: thoughts on ALS Association and Riluzole and Neurontin Doug, I can't believe you got such a negative comment as "you're living on borrowed time" from the ALS society. Did you talk to the folks in LA? If you want to get some compassionate conversations talk to Lynn Klein. She has talked to me several times and sent me very useful information in the mail like a list of the vendors who make augmentative speech equipment from a group in Buffalo. And a comprehensive stack of papers on how to fund the augmentative equipment. I can't believe you got such a negative result on calling ALS society. Do you get the LINK newsletter? ALSA just came out with their MAY issue for the spring. It talks about Riluzole. Thanks for the info about Riluzole and Neurontin taking 6 to 10 months to show their effects. I can't wait that long. I'm seeing a Homeopathic Doctor now. He says Homeopathy has been successful in treating Neuro Muscular Disease. Hope it works. I haven't seen anything yet that works to cure ALS. You don't deserve to be treated the way you indicated by the ALS society. I would try going to the top and talking to Lynn Klein. Good Luck with your scooter. I borrowed one from the Philadelphia to go to a Ham Radio Convention in Dayton and It saved me from walking 10 or 20 miles. This convention took up the space of the whole HARA Arena which covers several acres. The scooter is invaluable at these kinds of events. Regards, Michael Doliton Sony Medical Systems Division (5) ===== re BDNF ========== 05/18 1105 Medtronic and Amgen to explore direct infusion of ... MINNEAPOLIS (MAY 18) BUSINESS WIRE - May 18, 1994--Medtronic, Inc. (NYSE: MDT) announced today an agreement with Amgen, Inc.(NASDAQ: AMGN), to collaborate in research on direct delivery to the central nervous system of Brain-Derived Neurotrophic Factor (BDNF) for the treatment of neurodegenerative disorders. BDNF is a protein thought to protect nerve cells. The joint research team will explore direct delivery of BDNF to the cerebrospinal fluid via the Medtronic SynchroMed(R) implantable drug infusion system. BDNF is being developed and commercialized by Amgen-Regeneron Partners, which was established as part of a collaborative research and development agreement between Amgen and Regeneron Pharmaceuticals, Inc., of Tarrytown, NY. (6) ===== re BDNF (more) ========== RTf 05/18 1913 Amgen details Medtronic agreement LOS ANGELES, May 18 (Reuter) - Amgen Inc said its agreement with Medtronic Inc to explore the use of Medtronic's infusion pump for infusing brain-derived neurotrophic factor (BDNF) drug does not include any definite uses of the pump. The pump would be used in as-yet undetermined applications of the drug as an alternative to injections, an Amgen spokesman said. BDNF must be injected subcutaneously because it is a large molecule protein. BDNF is now in a Phase I/II clinical trial as a treatment for amyotroplic lateral sclerosis, commonly known as Lou Gehrig's disease. REUTER (7) ===== media list - Internet ========== -------------------------------------------------------------- Date : Sun, 15 May 1994 02:10:17 GMT Sender : Info-Nets List >From : Adam M Gaffin Subject: The Media List Update, 5/14/94 ---------------------------------------------------------------- THE MEDIA LIST UPDATE 5/14/94 What follows are new entries and corrections for the Media List, which is a listing of newspapers, radio stations, etc. that accept electronic submissions. This is NOT the complete list. You can obtain the entire list via ftp at ftp.std.com as: customers/periodicals/Middlesex-News/medialist. If you'd rather receive the list and updates automatically via e-mail, write to majordomo@world.std.com Leave the "subject:" line blank. As your message, write: subscribe medialist NOTES ON USING THIS LIST: If you want a publication to print your letter, include your postal address and phone number for verification purposes. Also, please consider NOT using this list to send a mass mailing to every single listed media outlet. A bicycling magazine is unlikely to be interested in your thoughts on abortion, no matter how cogent they are, for example. My thanks again to all who have contributed! Comments and suggestions -- and especially addresses of unlisted media organizations -- are most welcome. Please send them to adamg@world.std.com (please note the 'g' in adamg; adam@world.std.com is a very nice person who has been graciously forwarding mis-addressed e-mail, but he is not me). NOTE: Listings marked with an asterisk are corrections. DAILY NEWSPAPERS The Knoxville (Tenn.) News-Sentinel Newsroom kns-news@use.usit.net Letters kns-letters-to-editor@use.usit.net Salt Lake Tribune, Salt Lake City the.editors@sltrib.com WEEKLY NEWSPAPERS Icon, Iowa City icon@igc.apc.org COLLEGE NEWSPAPERS Daily Pennsylvanian, Univ. of Penn. dailypenn@a1.relay.upenn.edu MAGAZINES Clinical Psychiatry News, Rockville,Md. cpierce@cpcug.org *DePauw Magazine, Greencastle, Ind. mlillich@depauw.edu Family Practice News, Rockville, Md. cpierce@cpcug.org Internal Medicine News, Rockville, Md. cpierce@cpcug.org Ob.Gyn. News, Rockville, Md. cpierce@cpcug.org Pediatric News, Rockville, Md. cpierce@cpcug.org Rolling Stone, New York rollingstone@echonyc.com Skin & Allergy News, Rockville, Md. cpierce@cpcug.org Training Magazine, Minneapolis trainmag@aol.com U. Magazine umag@well.sf.ca.us NEWS/MEDIA SERVICES AND PRESS ASSOCIATIONS M2 News Agency, U.K. satnews@cix.compulink.co.uk Telecomworldwire, U.K satnews@cix.compulink.co.uk RADIO AND TELEVISION NETWORKS Nebraska Educational TV, Lincoln, Neb. etv@unlinfo.unl.edu PBS, "POV" povonline@aol.com RADIO AND TELEVISION STATIONS KUAT-TV, PBS, Tuscon, Ariz. comments@kuat.arizona.edu WHDH-TV, CBS, Boston 74201.2255@compuserve.com COMPUTER PUBLICATIONS *Journal of C Language Translation ljclt@iecc.com CD-ROM World meckler@jvnc.net Communications Networks, U.K. 75300.243@compuserve.com Computer Shopper, U.K. only 100034.1056@compuserve.com Computer Weekly, U.K. comp_weekly@cix.compulink.co.uk DBMS 73647.2767@compuserve.com NEWSLETTERS Card Systems satnews@cix.compulink.co.uk Data Broadcasting News satnews@cix.compulink.co.uk Satnews satnews@cix.compulink.co.uk -- Adam Gaffin adamg@world.std.com / (508) 820-7433 Big Dummy? Now it's Everybody's Guide to the Internet. Honest. (8) ===== Myotrophin, etc. ========== PENNSYLVANIA BIOTECH COMPANY CEPHALON'S RESEARCH CONTINUES TO BOOST REVENUES By Donna Shaw, Philadelphia Inquirer Knight-Ridder/Tribune Business News May 17--Biotechnology is a youthful industry in which fewer than 1 percent of the companies have products on the market. Many struggle just to stay afloat, so those with rising revenues stand out. Cephalon Inc., a West Chester, Pa., biotech firm specializing in neurodegenerative disorders, fits that profile. It reached No. 6 on the Inquirer 100 list of companies with the sharpest rise in revenues - even though it has no products to sell. Cephalon's lead compound, a drug to treat amyotrophic lateral sclerosis (ALS), known as Lou Gehrig's disease, is in late-stage human testing in the United States and Europe. < parts of this copyrighted article deleted > Cephalon is seeking medicines that promote neuron survival. The strategy has resulted in three broad research programs: Neurotrophic factors. These are naturally occurring proteins that promote neuron survival. Myotrophin, Cephalon's lead compound for ALS, utilizes such proteins. With modifications, the company believes they could prove useful against Alzheimer's disease, as well. Cephalon has a pilot plant in Beltsville, Md., that manufactures Myotrophin; if the drug receives government approval, Chiron will make the drug at its larger facilities. Protease inhibitors. A protease is a naturally occurring enzyme that promotes neuron death. Cephalon identified these enzymes and reproduced them. Now it is developing molecules that block, or inhibit, those enzymes. Alzheimer's disease is among the first targets, in research being done in conjunction with Schering-Plough. Cephalon is working with SmithKline Beecham to develop another variation, for use against stroke. RTK effectors. These are molecules that behave similarly to neurotrophic factors, but can cross the blood-brain barrier. Cephalon is studying use of these receptor tyrosine kinase effectors in head and spinal-cord injuries, with drug-maker Kyowa Hakko. (9) ===== biomed - Internet ========== ------------------------------ >From : "Frank Norman" Date : Sat, 7 May 94 15:15:07 GMT To : lis-medical@mailbase.ac.uk Subject: List of items on BUBL "News & Announcements in Biomedical field" ------------------------------ List of items on BUBL "News & Announcements in Biomedical field" 7.5.94 BUBL subject tree project BUBL subject tree: links to resources ... 61 - Medical Sciences News & Announcements ... 94.05 - WWW94 Workshop on Biology 94.06.01 - Bioinformatics and Genome Research 94.06.29 - British Biological Sciences Funding Day 94.07.01 - GUIs in bioinformatics 94.07.11 - Foundations of Information Science 94.07.24 - Xray Crystallography 94.07.24 - Mathematical Methods in Medical Imaging III 94.08.01 - International Summer School. Protein folding; biotechnology 94.08.17 - Intelligents Systems for Molecular Biology 94.09.07 - Genes Proteins & Computers conference (III) 94.09.08 - Gene Therapy of Cancer 95.01.03 - Computational Biology & Parallel Computing 95.01.03 - Project-Oriented DBs and KBs in Genome Research Lists - Biophysical society newsgroup established Lists - bionet.molbio.methds-reagnts FAQ list Lists - BIOSCI/bionet Frequently Asked Questions Lists - bionet.structural-nmr Lists - BIOSCI Newsgroups Information - Europe Lists - bionet.molbio.methds-reagnts FAQ ftp site Lists - Biologist's Guide: Mailing Lists Lists - Psychoneuroimmunology Lists - Traffic/readership in biology newsgroups Lists - Biotechnology education Misc - Electronic citations in print & ISI Servers - Health Services/Technology Assessment Servers - WWW versus gopher in biology (2) Servers - Restriction Enzyme Database (REBASE) Servers - PIR-International Protein Sequence Database release 40 Servers - Hybridoma Data Bank Servers - Whitehead-MIT genetic map of the mouse release 6 Servers - G-protein Email Fasta Server Servers - WWW interface for GenQuest (Sequence Searching) Servers - WWW versus gopher in biology (1) Servers - Mosaic access to IUBio archive Software - sequence alignment ----- Frank Norman | National Institute for Medical Research Deputy Librarian | The Ridgeway, Mill Hill, London NW7 1AA | bionir@uk.ac.mrc.nimr | f-norman@uk.ac.mrc.nimr | tel 081 959 3666 ext 2380 fax 081 906 4477 f-norman@national-institute-for-medical-research.mrc.ac.uk == end of als 101 ==