Date: Fri, 4 Nov 94 11:07:39 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#141 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#141, 04 November 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. The ALS Digest is == == published (approximately) weekly. Currently there are == == 380+ 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 .. Van w/Lift needed 2 .. Thick Saliva 3 .. Disabled users:computers for 4 .. Tony Vitale's get well fund 5 .. IgA Nephropathy 6 .. Clinical Alerts 7 .. GrantsNet 8 .. Genetic Monkeys (1) ===== Van w/Lift needed ========== >From : Donna Lee Burke Subject: Van w/Lift Needed Date : Wed, 2 Nov 94 16:48:14 PST SOS ... Please --- if you have any information regarding this need please respond ---- thank you. A Van with a lift is needed for my brother-in-law, Philip, who has ALS. He is still working, however, his legs barely hold him up and his arms are getting weaker. He would like to keep working as long as he can but his ability to transfer from the wheelchain to a van is becoming more and more difficult each day. Funds are limited but my sister is willing to work something out. The agency help located in this area has a long waiting period. Of course, the need was yesterday. So, please answer with any helpful information regarding an available van with a lift. My sister's name is Jennifer. She can be reached at (408)629-3208 in San Jose, CA. My return path is Donna-Lee Burke (2) ===== Thick Saliva ========== Date : Thu, 03 Nov 94 11:25:31 EST >From : "Mike Doliton" Subject: Thick Saliva Dear Carol Grass, I too have been fighting ALS while still working. I have thick saliva which is getting out of hand. I have tried transderm patch, and now I am trying Elavil. A lady in our support group said 25 mgs. of Elavil works for her. It actually dries her mouth. My doctor started me on 10 mgs. once a day but it doesn't help me so I am about to call him to try 25 mgs. once a day. It's worth a try. Regards, Michael Doliton, Sony Medical Systems (3) ===== Disabled users:computers for ========== Newsgroups: comp.sys.ibm.pc.misc >From : ae743@FreeNet.Carleton.CA (Jacqueline Hunt) Subject : Disabled users:computers for A friend of mind has ALS (Lou Gerhig's disease) and she and her husband are planning to get a computer to enhance her communication abilities and add a new interest to her life. Her speech is most severely affected at the moment. Both are computer newcomers. They are planning to get an IBM laptop with an additional desktop screen. I have suggested they invest in a touch sensitive screen so that the computer will still be useful if lack of manual dexterity makes use of the keyboard too difficult in the future. I am fairly computer literate but no pro so have offered to try to get advice on hardware/software that would best fit their needs. Can any of you experts out there help? -- (4) ===== Tony Vitale's get well fund ========== Date : Wed, 2 Nov 1994 17:30:28 EST Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3640 ---------------------------------------------------------------- To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send electronic mail to Bill McGarry at: INTERNET: wtm@bunker.afd.olivetti.com Bill McGarry (Moderator) (203) 926-6187 ---------------------------------------------------------------- Subject: Tony Vitale's get well fund. >From : sara@miata.nynexst.com (Sara Basson) The AVIOS Anthony J. Vitale ALS Get Well Fund Tony Vitale - President of AVIOS, Editor-in-Chief of the AVIOS International Journal of Speech Technology, Senior Consultant Engineer in Linguistics and Speech Technology at Digital Equipment Corporation, Co-developer of the DecTalk Speech Synthesizer, well-known in the Speech Technology community as well as the Assistive Technology community, athlete, linguist, writer, friend, - has ALS. (Amyotropic Lateral Sclerosis) (Lou Gehrig's disease) A gene associated with ALS was identified in May, 1993. Doctors on the cutting edge of ALS research now believe a cure will be available within 10 years. We want to hasten that cure, and we want Tony to enjoy its benefits. We have established the AVIOS Anthony J. Vitale ALS Get Well Fund with this express purpose. AVIOS will manage the fund and all donations to Tony's fund will be judiciously distributed by AVIOS to the most promising sites for cure advances. There will be no administrative charges, and 100% of the funds will be available for distribution. Detailed information about fund distribution will be available upon request. Please send your donation to: The AVIOS Anthony J. Vitale ALS Get Well Fund c/o AVIOS 4010 Moorpark Avenue Suite 105M San Jose, CA 95117 (5) ===== IgA Nephropathy ========== Date : Thu, 3 Nov 1994 15:15:24 -0500 >From : GlennB7490@aol.com Subject: IgA Nephropathy IgA Nephropathy is, like ALS, an autoimmune disease that causes the body's immune system to attack certain healthy parts. I have no idea if fish oil helps ALS patients, but perhaps there's a link. ************************************************* Fish oil may delay kidney failure, study says Release at 6 p.m EST BOSTON (Reuter) - Fish oil capsules, already touted as a way to keep heart disease at bay, may also be useful at warding off kidney failure in people suffering from the kidney disease known as IgA nephropathy. Researchers from the Mayo Clinic in Rochester, Minn., had 55 sufferers take 12 grams of fish oil or an olive oil placebo daily for two years. After a four-year period, 40 percent of the placebo recipients had died or developed kidney failure, compared with only 10 percent of the people in the fish oil group, according to the study, published Thursday in the New England Journal of Medicine. The researchers found no serious side effects to the treatment. ``The only complaint, by some patients in the fish oil group, was of a fishy aftertaste despite the addition of peppermint oil to the fish oil,'' said the research team, led by Dr James Donadio. Kidney failure usually develops in roughly 30 percent of people with IgA nephropathy. Kidney failure typically occurs five to 25 years after the nephropathy is discovered by doctors. Past studies of fish oil supplements, involving fewer volunteers, have produced inconsistent results, so further tests are needed, the Donadio group said. In an editorial in the Journal, Dr Charles van Ypersele de Strihou of the University of Louvain Medical School in Brussels, said the approach by the Mayo team is ``promising'' because fish oil doesn't have the potential side effects associated with conventional drugs. The drawback of a fishy taste is ``a very small price indeed if its promises are fulfilled in the long term,'' he said. (6) ===== Clinical Alerts ========== Date : Tue, 1 Nov 1994 08:35:35 EST Sender : Clinical Alerts from NIH >From : Gary Freiburger Subject: Monthly Message +----+-----+-----+-----+-----+-----+-----+-----+-----+ This is a regular monthly message from the CLINALRT list which resides at the University of Maryland at Baltimore. The purpose of the list is to provide for electronic distribution of Clinical Alerts which are issued infrequently and irregularly by the National Institutes of Health. The list is intended to serve health professionals, health science libraries and others who will benefit by receiving a machine readable copy of the alerts soon after they are released. To drop your subscription to the list, send the message: signoff clinalrt to: listserv@umab.umd.edu or send a message to the moderator, Gary Freiburger at: gfreibur@umab.umd.edu (7) ===== GrantsNet ========== Date : Fri, 4 Nov 1994 08:40:33 +1100 Sender : anchodd@cc.utas.edu.au >From : S.McLean@pharm.utas.edu.au Subject: GrantsNet Comment: Australian National Clearing House on Drug Development The US Department of Health and Human Services (DHHS) is piloting an on-line grant information service, GrantsNet, a free public-access computer network to provide on-line grant resource information to the public. The following information has been provided by the undersigned staff of DHHS, to whom inquiries should be addressed. ************************************************************* GrantsNet is a network-based tool for finding and exchanging information about HHS and other government grant programs. Over the last few months we have been developing and testing a limited version of the GrantsNet. Such testing has included posting notices on grant resources and activities on the GrantsNet information service that can be accessed through the HHS web and gopher servers. Although GrantsNet is still in the pilot-testing phase, we are targeting October 1994 for making increased information available on our network. For example, we intend to provide the following types of information: HHS' mission; the various grant-making agencies within HHS; the services these agencies provide; a directory of grants-related Federal staff; profiles and funding availability of Federal grant programs; and the pertinent laws, regulations, and policies that affect HHS grant programs. Further, HHS is strongly committed to fully developing GrantsNet so that it will become an invaluable communication tool for our grantee community and the general public. We recognize that for GrantsNet to become a practical and user-friendly information service, feedback from users will be important. To that end, we welcome any comments or suggestions you may have. The project lead for this initiative is Suzanne Neill, a Grants Policy Specialist within my office. She will keep you abreast of new developments and refinements to GrantsNet on a periodic basis. In the interim, any questions or comments should be directed to: Suzanne Neill or Charles Bish (202) 690-5731 (202) 690-6574 sneill@os.dhhs.gov cbish@os.dhhs.gov To logon to GrantsNet, set your host gopher connection to:gopher.os.dhhs.gov at Port 70. Or, if you prefer, simply use Veronica to search for the GrantsNet gopher site. In either case, once you have found GrantsNet you should create a bookmark of the site in order to more easily access it in subsequent gophering sessions. If you have any questions, please contact Suzanne Neill. Again, I thank you for your interest in this challenging initiative. Sincerely, Charles Gale Director Division of Grants Policy and Oversight Office of the Secretary, HHS (8) ===== Genetic Monkeys ========== By PAUL RAEBURN AP Science Editor MADISON, Wis. (AP) -- Scientists working with monkeys have taken a crucial step toward a new kind of gene therapy in which tissue such as bone and blood could one day be grown in the laboratory and used to cure diseases in humans. The researchers isolated for the first time embryonic monkey cells known as stem cells. In two to four years, the cells could lead to the creation of genetically altered monkeys with illnesses that mimic human diseases such as AIDS and multiple sclerosis. That could advance the study of those diseases. In the longer term, scientists may be able to isolate stem cells in humans and grow those cells in the laboratory as replacements for diseased tissue. Similar work has been done in mice for a decade. The critical feature of the cells is that they are parent cells of all tissue in the body and can be induced to grow into different kinds of tissue, Hearn said. Researchers must closely study the characteristics of the cells before they can attempt to genetically alter them to produce monkeys with AIDS, MS, Lou Gehrig's disease and other mutations, he said. ==================== < parts deleted > Some human diseases, such as cystic fibrosis, can be produced in mice, but because the physiology of mice is so different, the mice don't come down with the same symptoms as humans. Experiments with monkeys could remedy that difficulty, said Rudolf Jaenisch of the Whitehead Institute and the Massachusetts Institute of Technology. "Now you would have a model which is very close to the human," he said. < parts deleted > === end of als 141 ===