=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#65, 29 October 1993) == == == == ----- 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 == == 140+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == == == All interested people may "broadcast" messages to == == ALS Digest subscribers by sending to: == == als@huey.met.fsu.edu == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32310 USA == =============================================================== == Back issues are available via e-mail from: == == LISTSERV@mailer.fsu.edu == == send an e-mail message that says INDEX ALS == == Also available via anonymous FTP at mailer.fsu.edu == == directory ftp/pub/als == =============================================================== (1) ===== some technical questions ========== > >CompuServe Mail >Date : 17-Oct-93 13:31 EDT >From : Gary D Wilcox [71043,3121] - 71043.3121@compuserve.com >Subj : Subscription and Questions > >Bob >Please include me on your subscription list. I've been receiving >it now for about a week and enjoy the different thoughts. >I have two questions: > 1. Why is postage due on each communication? > 2. What is UUDECODE and how do I find it and use it to > decode the messages that need deciphering? >Gary > Gary ... The *postage due* is something CompuServe does. Some commercial systems, like for instance MCI Mail, do not charge subscribers to receive Internet Messages. There are other options, for instance here in Tallahassee there is the Tallahassee FreeNet. It is connected directly to the Internet and it costs nothing to use. If you let me know what city you live in I will do a search to see if such an inexpensive system is available to you. Here in the US there are many options. Hopefully in the near future you will be able to receive e-mail messages at no cost. Access to the Internet is usually more difficult at other locations around the world. My personal hope is that all of the national ALS groups that were listed in a recent issue of ALS Digest will one day be communicating with us via e-mail. A guy named Bill Parlette in Switzerland is seeking funding to provide equipment and training that will make it happen. We will be providing more information about that project in the very near future. Regarding the UUDECODE message, it was a mistake made by the sender. Probably you will not see such messages on this system in the future. By the way, the messages that were transmitted in an encoded format have been converted to ASCII characters and have been included in this issue as section (2). So Gary, welcome to ALS-ON-LINE, and please keep the faith, we as a group will *may* be able to make a difference! Sincerely, Bro (Bob Broedel) (2) ===== ALS INTRO - Bill Karavas & Grant Nicholas ========== CompuServe Mail Date : 20-Oct-93 20:34 EDT >From: Grant L. Nicholas [74000,1616] - 74000.1616@compuserve.com Subj : Re submission of Garbled text Bob, Here below is the stuff that I sent previously by mistake as encoded text. rgds, Nick. =========ALS INTRO============ My father-in-law, Bill Karavas, has recently been diagnosed as having ALS. Dad is 69 years old, born and raised in the Chicago area. He served in WWII as a U.S. NAVY Frogman (UDT). Much of his active time was in the Pacific where he spent 18 months on the island of Guam. He and his unit subsisted on the local economy. After the war he worked as a mechanic, then opened his own lawn mower business, and later drove a heating oil delivery truck. These jobs become important in our attempt to understand the cause of his affliction after reading Ron Leeb's well reasoned paper on the Castor Bean. Dad is a retired truck driver and is also retired from the U.S. NAVY, having spent thirty plus years serving on active duty and in the reserves. When Dad retired he was a Construction Mechanic Chief Petty Officer, serving with the SeaBee unit at Glenview Naval Air Station, Glenview, IL. Dad and Mom moved to New Mexico to be near our children. We relocated here in 1984, they came in 1987. A little over a year ago we noticed that Dad had a shortness of breath which we attributed to the altitude, Santa Fe being 7000 feet in the sky. He also spoke of generally just not feeling well, but nothing specific. When they traveled to either coast he said he felt better. Until early this summer they had contemplated moving to California. Dad began having difficulty grasping and working things, turning the ignition key in the car for example. He went to a chiropractor and seemed to improve, then the boys, Dad, myself and my son Paul, went fishing and bonding. We have pellet pistol that my son really enjoys shooting and we reserved an afternoon for that. Paul asked his Grandfather to show him something and Dad found he couldn't cock the pistol. He went to a GP who referred him to a neurologist. Dad's neurologist ordered a CAT scan, and originally recommended an immediate operation on his neck, but had some reservations and consulted with two other neurologists. They concluded he had "classic ALS". The day he was informed of this the neurologist received a request for referrals for a C.N.T.F. clinical study sponsored by Synergen-Syntex at the University of New Mexico Medical Center in Albuquerque. Dad was referred to the researcher. He went to the UNM medical research center, was tested and asked to return the next day. He is coming up on the third month of pre-testing, at which time he will be informed whether or not he'll be part of the drug treatment trials. Dad still is able to walk, talk and drive. His upper body strength and use of his arms and hands seem the most affected. As patient, as well as present and future care givers we are all very appreciative of the information made available through the ALS INTEREST GROUP. =========ALS INTRO============ I'm Grant Nicholas, the electronic interface for Bill Karavas. I'm actually his son-in-law, having been lucky enough to convince his daughter to marry me. I too am retired from the U.S. NAVY. My friends and family call me Nick. I am employed at the Los Alamos National Laboratory in the Space Science Department. We build satellites instruments for space exploration. I'm new to INTERNETing, but have a limited competency with computers. I am very appreciative of the ALS INTEREST GROUP and the ALS Digest. If I can ever be of service to anyone in the group please don't hesitate to ask. E-Mail to myself or my Father-in-Law can be sent on Internet to gnicholas@lanl.gov, or Compuserve at 74000,1616. I admit to reading Compuserve only sporadically, that is changing but the best bet of reaching me in a hurry is the Internet. (3) ===== re: CNTF / Synergen ========== =======Synergen-Syntex C.N.T.F. Clinical Trials============= The information below was given Bill Karavas when he began the pre-trial testing. Uploaded to this net by Grant Nicholas. ---------------- C.N.T.F. CLINICAL TRIAL IN PATIENTS WITH A.L.S. (LOU GERHIG'S DISEASE) 1. How many centers and patients are involved in this clinical trial? A: The double-blind, placebo-controlled study will enroll more than 500 patients at approximately 30 medical centers in the United States. 2. When will you begin drug treatment of patients? A: Approximately 4 months after the first patients are enrolled. After a period (at least 3 months) of observing patients' muscle strength, eligible patients enter the active part of the study. They will randomly be selected into one of four groups, one group will receive placebo, and the other three will receive a small medium and large dose of CNTF, respectively. 3. How will the drug be administered? A: CNTF will be administered by a daily subcutaneous injection, which in the method patients with diabetes use to inject insulin. 4. Does Synergen-Syntex have a compassionate use program in place? A: Currently, the Synergen-Syntex Neuroscience Joint Venture has no compassionate use program in place. Until the have a better idea of its safety, potential effectiveness, and dosing, they will not make it available outside the controlled environment of clinical trials. 5. What are the chances of an ALS patient to enter the study? A: It is estimated that only a minority of patients with ALS will fulfill the strict criteria to participate in this study. However, by establishing the safety and efficacy of CNTF in patients in this trial, broader testing of the drug may be possible in the future. 6. Why aren't all ALS patients eligible for this trial? A: Any rigorously conducted scientific trial looking at safety and effectiveness of a drug needs to have entry criteria for potential patients. This screens out people who may be greater risk for being harmed by taking the drug, and collects a group of patients with a similar neurologic picture so that an effective and accurate analysis con be done on the data collected. 7. Do you believe CNTF will help ALS patients? A: In preclinical laboratory models, CNTF appears to protect motor neurons that are similar to those that degenerate in ALS patients. However, it is too early to say if CNTF may be effective in humans. The new trial will help us answer that question. 8. What side effects have been observed with CNTF? A: A few patients who have been previously exposed to the virus that causes cold sores had a recurrence of cold sores, which resolve quickly. Patients can also develop increased salivation, weight loss, appetite loss and swallowing difficulties. 9. Do you know when the trial will be completed? A: If everything goes according to schedule, the trial will take at least one year from now. ------------------- (4) ===== notes from a participant of the ALS discussion group on Prodigy. ========== Date : Tue, 19 Oct 1993 18:57:35 EDT >From : MHRM25A@prodigy.com (MR JOHN R NORTON III) X-Mailer: PRODIGY Services Company Internet mailer [PIM 2.0.0-257.58] Subject : PRODIGY TEST It was great talking to you! I have ALS and am 43 yrs old married w/3 young daughters 16,9,7. Dx in Oct 92 - progression slow may be in Synergen test 1st week of November. Prodigy group is talking about an electronic advocacy group for ALS patients. Should we push to have ALSA change or take the bull by the horns? We are thinking about a "Targeting" effort - where weekly we send letters to key decision makers - eg Janet Woodcock - synchronize the effort that hundreds of letters arrive within a few days of one another. Best bet would to be to send to their homes and work. Get their families involved with our plight - just an idea. We need to push for compassionate access for advanced patients - I classify those as ones that can't meet trial requirements - what do you think? Do you know how many people there are on Internet? Would they be interested in synchronized targeting? Jack Norton/Andover,Mn The Quest Continues! Date : Mon, 25 Oct 1993 20:52:27 EDT >From : MHRM25A@prodigy.com (MR JOHN R NORTON III) X-Mailer: PRODIGY Services Company Internet mailer [PIM 2.0.1-291.47] Subject : Re: als 63 Bob, got all your messages thank you! I guess we have to be careful what gets sent average message cost about $1.00 each. We have seen most of what you have sent along but the FDA article seems to be vindicating a "sluggish" Fast Track program. WE have started a Targeting campaign and would like to get others to join in - It can't hurt to send a couple 100 letters to key people a week and this week we chose Senator Amato of New York - we are asking for compassionate issue of the drug - there has been some talk that they are considering it and will need to get a protocol going and that it will be not until late first quarter - we think that's ridiculous and those on the threshold of death should have the choice to take the drug now. If possible could you highlight what interesting topics you would like to send along - I know it would cost me at least a $1 to copy them all at the library but wife audits my prodigy bill Here is my letter to the Senator: 22 October 1993 The Honorable Alfonse M. D'Amato United States Senate Hart Senate Office Bldg. Room 520 Washington, DC. 20510 Dear Senator D' Amato: There is a corporation in your Great State that has developed a drug that has shown promising effects in early trials of slowing the progression of Amyotrophic Lateral Sclerosis (Lou Gehrig's ) disease. The FDA notified a family in your constituency, that based on the very positive Phase II results, FDA regulations permit the administration of this drug to desperately ill people (Treatment IND designation - or compassionate use). The outrageous issue is that the company has not immediately made this available! Hundreds, if not thousands, of people are dying annually from this disease. We can understand that it may be expensive or that there maybe a lack of capacity to produce mass amounts of this new drug therapy. These are issues that can be dealt with, either through support from MDA or a lottery for the drug as a firm has done for Multiple Sclerosis. What we want you to do is to call Regeneron and insist that the drug be issued to those identified as having a compassionate and immediate need!. Don't let them tell you they are working on it - insist it be available by the 1st of December - every month of delay is the death knoll for those clinging to life waiting for the drug. Tell them to make the drug available by the 1st of December. This is America cut through the Bureaucracy - lives are at stake! When you write back to Joe Hein, RD 3 Box 31, Altamont, NY 12009, inquire after his sister Mary Ellen Donnelly -- victim of ALS - waiting for your action in our behalf. Contact the Chairman of Regeneron, Leonard Schleifer, at 914/345-7400. Remind him that New York is guaranteeing $7 million for his manufacturing plant acquisition. He needs to make CNTF available NOW! You can facilitate the action and insure the FDA does not become another obstacle - Thank you and the Great State of New York Jack (ALS patient) & Cindy Norton Andover, MN The PROD! cc: Senator Paul Wellstone Senator David Durenberg (5) ===== Resources ========== New video about ALS available. "What is ALS", a video for people newly diagnosed with ALS, their families, friends, and health care professionals, is now available through the ALS Association. It is an educational video that provides information about the disease -- presented with hope and emphasizing learning to live with ALS. The cost is $15 which includes shipping and handling. Available from: ALS Association; 21021 Ventura Boulevard, Suite 321; Woodland Hills, CA 91364 USA; TEL 818-340-7500; 3FAX 818-340-2060. (6) ===== coming next month ========== ======================================================== === === === 4th International Symposium on ALS/MND === === === === 25-27 November 1993 - Chantilly, Paris, FRANCE === === === === Scientific meeting: === === NEUROPROTECTION AND CLINICAL TRIALS === === === === Clinical meeting: === === TRIALS IN PATIENT CARE & DISEASE MANAGEMENT === === === ======================================================== === === === For more information, please contact the === === conference organizer: === === === === Mary Pearson === === Motor Neurone Disease Association U.K. === === P.O. Box 246 === === Northampton NN1 2PR UNITED KINGDOM === === TEL +44-604-22269 === === FAX +44-604-24726 === === === ======================================================== (7) ===== another e-mail list we should know about and make use of ========== Date : Tue, 26 Oct 93 18:58:51 GMT Sender : International Discussion on Health Research : >From : "J. Philip Miller" Subject: The HEALTH-L List is open After a number of mail loop disasters and a long and difficult time in changing owners of the list, I have taken over ownership of HEALTH-L rather than letting it die. I am regularly signed onto my system 12-16 hours a day and I am an experienced list owner, so I doubt that we will have mail problems similiar to those previously experienced. The current subscription list includes 146 addresses, several appear to be used as redistribution points to other individuals. The future of the list is up to you. If you have issues you would like to be discussed here, please post. If the traffic does not pick up, then we will simply disband the list. -- J. Philip Miller, Professor, Division of Biostatistics, Box 8067 Washington University Medical School, St. Louis MO 63110 phil@wubios.WUstl.edu - (314) 362-3617 [362-2693(FAX)] (8) ===== coming next year ========== THE THIRD ALTSCHUL SYMPOSIUM Neural Cell Specification: Molecular Mechanisms and Neurotherapeutic Implications May 12-14, 1994 University of Saskatchewan Saskatoon, Saskatchewan, Canada Speakers: Aebischer, P. (Switzerland) Joyner, A. (Canada) Raisman, G. (England) Anderson, D. (U.S.A.) Julien, J.-P. (Canada) Reynolds, B. (Canada) Birren, S. (U.S.A.) Kordower, J. (U.S.A.) Rosenfeld, M.G. (U.S.A.) Bjorklund, A. (Sweden) Krumlauf, R. (England) Sladek, J. (U.S.A.) Boncinelli, E. (Italy) Landis, S. (U.S.A.) Tremblay, P. (Germany) Bredesen, D. (U.S.A.) Linney, E. (U.S.A.) Weiss, S. (Canada) Cepko, C. (U.S.A.) Lumsden, A. (U.S.A.) Widner, H. (Sweden) Fishell, G. (U.S.A.) Mark, M. (France) Wolff, J. (U.S.A.) Gage, F. (U.S.A.) McKay, R. (U.S.A.) Yamada, T. (U.S.A.) Garriga, G. (U.S.A.) Noble, M. (England) Jarman, A. (U.S.A.) Olson, L. (Sweden) Scientific Sessions: * Neural Cell Replacement: Interface of Basic Science and Clinical Trials * Pattern Formation in the Vertebrate CNS * Genetic Determinants of Neural Cell Fate * Neural Cell Differentiation * Strategies for Cell Replacement in Neurodegenerative Disorders (two sessions) Poster Sessions Group Discussions Hot Data Session Registration Fee: Before March 12, 1994 $180 After March 12, 1994 $220 Residents and Postdoctoral Fellows $ 60 Students (graduate/undergraduate) No Charge Accommodation and Meals (reasonably-priced) at University Residences Air Canada is the official airline carrier Reservations: Tel. 1-800-361-7585 Event No. CV940214 For Further Information Please Contact Symposium Coordinator: Dr. R. Doucette Department of Anatomy, College of Medicine University of Saskatchewan Saskatoon, Saskatchewan, Canada S7N 0W0 Telephone: (306) 966-4092 Fax: (306) 966-4298 or email: Krone@sask.usask.ca or Tim.Archer@usask.ca == end of als 65 ==