=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#62, 15 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 == == 130+ 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 == =============================================================== (1) ===== ALS-INTRO ========== (a)----- Date : Mon, 11 Oct 93 13:55:15 EDT >From: dlmc@med.unc.edu (David McIlwain) Lee McIlwain, a professor of physiology at the University of North Carolina at Chapel Hill, USA, does research on the chemistry of spinal motoneurons. Using isolated motoneuron cell bodies, he studies biochemical changes in regenerating and degenerating spinal motoneurons. He serves as a research advisor to the North Carolina chapter of the ALS Association. (b)----- Date : 11 Oct 93 20:44:36 EDT >From : Barry Goldberg <71154.330@CompuServe.COM> By way of introduction to everyone on the board, I'm Barry Goldberg and I was diagnosed with ALS in January of 1990 when I was 43 years old. Today I'm a very happy 47-1/2 (yes, with this disease I definitely believe even the 1/2's are important again!) and I have a wonderful wife who will celebrate with me our 28th anniversary next month. I have a terrific 21-year old daughter, Michelle, who is currently living in Germany with her husband and a typical, but equally terrific 15-year old son, Danny, who is in high school and costing me a fortune now that he's learning to drive! I continue to work from my home in Plano, Texas, as Director of Corporate Marketing for what is now called the SABRE Technology Group, the umbrella of all technology companies under AMR Corporation, the parent of American Airlines. I use DragonDictate, a voice recognition system, for all computer input since my speech has only just begun being affected and since DragonDictate adjusts to changes in my speech patterns as I go along. Like Mike Ward, I'm a former guitar player (and violin, too) and was very active in the community, particularly Boy Scouts. I'm presently on MDA's National Task Force on Public Awareness, speak on behalf of MDA across the country and have appeared on the national telethon for the last three years. Speaking out is my way of dealing with this disease and it helps when I can inform, educate or help others with this or other neuromuscular disease. --- MDA -- Working to find the cure for neuromuscular disease (2) ===== re: Cyto-Therapeutics ========== >From : Tony McDonough Date : Thu, 14 Oct 93 15:39:51 BST Subject: CRIB application I called Elizabeth Razee from Cyto-therapeutics today and asked her about the progress, if any, they have made with bringing this CRIB technology to ALS. She could not be specific at this point but clearly this disease is being targetted. I gave her the mail address for the group and she promised to update us as events begin to unfold. The pace of these developments is certainly starting to increase quickly from 15 years to 8 to 3 for their three primary products which they currently market. There have been so many false dawns with this disease it is difficult to get excited but this NGF implant does look mildly encouraging as a treatment albeit not a cure. Regards, Tony (3) ===== Neurosciences Internet Resource Guide ========== Date : Thu, 14 Oct 1993 12:08:20 +0100 Sender : Methods in Modern Neuroscience From : steve bonario =================================================== The Neurosciences: An Internet Resource Guide =================================================== WHAT WE'RE DOING: A Neurosciences Internet Resource Guide (NIRG) is currently under construction at the University of Michigan's School of Information and Library Studies. The NIRG project proposes to bring together related neuroscience resources in biology, biotechnology, and the bioelectrical and biomedical fields. Resources will include electronic journals, newsletters, databases, image and video databases, documents, reports, gopher sites, usenet and listserv groups, among others. In order to provide the most useful guide possible, we welcome resource suggestions from members of the Internet community and specifically those with some expertise in the neurosciences. If you know of a unique, relevant, or useful resource, we'd love to hear from you. Even if you don't know of a resource, we'd like to know what you think of the value of such a guide. Your participation is crucial to the success of this project. WHY WE'RE DOING IT: Several excellent guides to Biology resources on the Internet exist (such as Una R. Smith's). This project will provide not only a guide with a tighter focus on Neuroscience resources, but also a guide with a broader, more interdisciplinary approach. WHO WE ARE: The NIRG project is directed by Sheryl Cormicle and Steve Bonario, two Masters-level students in the School of Information and Library Studies at the University of Michigan. The resource guide is a term project and will be made available to the Internet community in December of this year. We hope to make the guide available in several formats, including a simple text file, a gopher document, and an HTML document. CONTACT: If you wish to forward a suggested resource, please send mail to nirg@umich.edu You may also write to us directly: Sheryl Cormicle, sherylc@umich.edu or Steve Bonario, sbonario@umich.edu Thanks in advance! (4) ===== bioethics calendar (parts deleted) ========== Date : Tue, 12 Oct 1993 11:28:21 -0500 Sender : BIOMED-L Biomedical Ethics From : Russell McIntyre Subject: Bioethics Calendar (parts deleted) INTERNATIONAL CALENDAR OF BIOETHICS EVENTS from TRENDS IN HEALTH CARE, LAW AND ETHICS A Journal of Contemporary Issues in Health Care Published Quarterly in Cooperation with the UMDNJ-Robert Wood Johnson Medical School P.O. Box 896 Piscataway, NJ 08855-0896 Russell L. McIntyre, Th.D., Editor rmcintyr@umdnj.edu October 21-22, 1993. Protecting Human Subjects: Challenges Presented by the New Research Environ- ment. Sponsored by Public Responsibility in Medicine and Research (PRIM&R) and Tufts Uni- versity School of Medicine. Annual meeting for Institutional Review Board Members and clinical investigators. Topics include: At what point does experimental therapy become standard treatment? Sensitively recruiting and retraining special populations in research. Drafting intelligible and non-coercive informed consent forms. For information, write: PRIM&R, 132 Boylston Street, 4th Floor, Boston, MA 02116. Phone: (617) 423- 4112. FAX: (617) 423-1185. November 8-10, 1993. Decisions Near The End-Of-Life. A clinically based education program on ethical and legal issues in the care of the dying. To be held in San Diego, CA. Sponsored by the Education Development Center, 55 Chapel Street, Newton, MA 02160. Phone: (617) 969-7100. The conference is for hospital and long-term care personnel. February 24-25, 1994. Conference on Death Education as an Integral Part of Medical School and Continuing Medical Educa- tion. Sponsored by The American Institute of Life-Threatening Illness and Loss, and Columbia-Presbyterian Medical Center. The conference will be held at the Midtown Sheraton Hotel, 53rd Street and 7th Avenue, New York City. For information, contact: Alice D. Kitchen, M.D., Chair, Conference Planning Committee, The American Institute of Life-Threatening Illness and Loss, 630 West 168th Street, New York, NY 10032. Phone: (212) 928-2066; FAX (914) 793-0813. March 19-20, 1994. Health Care Ethics Forum '94. Sponsored by the American Association of Critical Care Nurses and the Society of Critical Care Medicine. This is an annual two-day interdisciplinary forum on the "most burning issues, current wisdom, knowledge and experience" in health care ethics. To be held in Washington, D.C. For information, contact: AACN-Critical Care, 101 Columbia, Aliso Viejo, CA 92656. Phone (800) 899- 2226; FAX (714) 362-2020. (5) ===== time for a trip to Cuba ? (!) ========== Citation: Latin America Intelligence Report, February 22, 1993 Subscription: $1,100 per month via satellite feed as of 1/93. Published daily. Contact International Intelligence Report, Inc., 2300 M Street NW, Suite 800, Washington, DC 20037. Phone (202) 833-8300. FAX (202) 333-2550. =================================================================== Title: Neurological Treatment Center Highlighted Today, a time during which skeptics are joining forces in a supposedly unipolar world, there are always arguments against believing that those who ambush the beautiful princess are monsters; for believing that Snow White also lies; and for believing that King Kong no longer frightens anyone. Why not introduce a new buzz into the system, aimed at those skeptics, in connection with the fifth anniversary of the creation of Cuba's National Neurological Restoration Center, which is coming up in a few days on 26 February. This center was first called Ibero-Latin American Center for Nervous System Transplants and Regeneration. Indeed, yesterday, the foreign journalists accredited in Cuba, as well as Cuba's journalists, were invited to a news conference on this subject at this institution's headquarters. But much more interesting than the data and statistics provided was discovery, by means of an extensive tour of this headquarters, of the secret of how people with motor difficulties (desajuiciadas en su aparato 1ocomotor) or with Parkinson's Disease can find solutions to their afflictions. Cuba is the only country in the world that has this kind of international center for neurological restoration, a center at which over these past five years some 12,000 patients from Cuba and several other parts of the world have received scientific treatment for illnesses called incurable such as strokes (infartos cerebrales) without creating spectacular expectations, but simply by opening up new possibilities aimed at neurological restoration, using automated highly automated surgical techniques. Comparisons are not always successful, because they sometimes lead to the difficult conclusion that something is better or worse than something else. However, what can be said about a social security (asistencial) center where every patient has an exclusive parsmedical team (preceding word in English) just for him that can treat his neurological illness, taking as many hours as necessary for the treatment, without the patient's needing to worry about whether or not his medical insurance is going to be enough to cover even a single hour of treatment. Yes, I say one hour because the latest reports calculate that in Spain, for example, a single hour of this kind of treatment costs some $31 dollars, while a patient can require weeks to improve. Sustained efforts by our outstanding neuroscientists-efforts aimed at finding ways to relieve the patient, solutions to supposedly incurable neurological diseases such as Parkinson's Disease demonstrate, not in vain, that Cuba is a medical power. There are therefore always arguments for sustaining a cause, and reasons not to become dispirited and to love this Revolution, even in difficult times. From Havana Radio in Spanish ========================================================================== (6) ===== e-mail to the Whitehouse ========== From : BECKETT@bim.msu.edu Date : 11 Oct 93 08:46:44 EDT Subject: Re: A Call To Action Here is another way to get the message to the president. You might have better luck with the VP due to his experience with his son's tramatic car accident. THE WHITE HOUSE Office of Presidential Correspondence ______________________________________________________________ For Immediate Release June 1, 1993 LETTER FROM THE PRESIDENT AND VICE PRESIDENT IN ANNOUNCEMENT OF WHITE HOUSE ELECTRONIC MAIL ACCESS Dear Friends: Part of our commitment to change is to keep the White House in step with today's changing technology. As we move ahead into the twenty-first century, we must have a government that can show the way and lead by example. Today, we are pleased to announce that for the first time in history, the White House will be connected to you via electronic mail. Electronic mail will bring the Presidency and this Administration closer and make it more accessible to the people. The White House will be connected to the Internet as well as several on-line commercial vendors, thus making us more accessible and more in touch with people across this country. We will not be alone in this venture. Congress is also getting involved, and an exciting announcement regarding electronic mail is expected to come from the House of Representatives tomorrow. Various government agencies also will be taking part in the near future. Americans Communicating Electronically is a project developed by several government agencies to coordinate and improve access to the nation's educational and information assets and resources. This will be done through interactive communications such as electronic mail, and brought to people who do not have ready access to a computer. However, we must be realistic about the limitations and expectations of the White House electronic mail system. This experiment is the first-ever e-mail project done on such a large scale. As we work to reinvent government and streamline our processes, the e-mail project can help to put us on the leading edge of progress. Initially, your e-mail message will be read and receipt immediately acknowledged. A careful count will be taken on the number received as well as the subject of each message. However, the White House is not yet capable of sending back a tailored response via electronic mail. We are hoping this will happen by the end of the year. A number of response-based programs which allow technology to help us read your message more effectively and, eventually respond to you electronically in a timely fashion will be tried out as well. These programs will change periodically as we experiment with the best way to handle electronic mail from the public. Since this has never been tried before, it is important to allow for some flexibility in the system in these first stages. We welcome your suggestions. This is an historic moment in the White House and we look forward to your participation and enthusiasm for this milestone event. We eagerly anticipate the day when electronic mail from the public is an integral and normal part of the White House communications system. President Clinton Vice President Gore PRESIDENT@WHITEHOUSE.GOV VICE.PRESIDENT@WHITEHOUSE.GOV ********************************************************************** Clifford L. Beckett MAIL ID: beckett@bim.msu.edu System Designer Biomechanics Department Michigan State University VOICE: (517) 355-4659 E. Lansing, MI 48824 FAX: (517) 353-0789 ********************************************************************** == end of als 62 ==