=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#104, 01 June 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 == == 250+ 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 .. Assistive Equipment 2 .. MDA Research Report #47 3 .. LOOKING FOR NEUROTROPHINS 4 .. NLM Technical Bulletin 5 .. calendar of meetings (1) ===== Assistive Equipment ========== >From : "Jeff Esko" Date : 31 May 1994 10:25:18 CST+6CDT Subject: Assistive Equipment I read with interest the note from jdevereux@gcg.com regarding coping methods and assistive tools and techniques. Those individuals with access to Apple computers will find Don Johnston Developmental Equipment a source for alternate input devices and specialized software for the physically challenged. Although they concentrate on children with physical disabilities, much of their equipment (switches, alternate keyboards, etc.) can be used by adults as well. They also have word processing programs like Co:Writer that simplifies the writing process. They can be contacted at 800-999-4660 in the US and Canada, at 708-526-2682 (international) and by FAX at 708-526-4177. They also can be reached by e-mail at djde@AOL.com. Another excellent source of adaptive computer products is Apple's Disabilities Solutions for the Macintosh which can be reached by anonymous ftp at ftp.apple.com. Go to apple/diability-solutions/MDR.hqx. MDR is a hypercard stack that includes software and hardware products for individuals with physical motor impairments, blindness, hearing impairments, speech difficulties, and learning disabilities. MDR can be searched by keywords, product name, developer name, disability type, and description text. Macintosh Disability Resources can be contacted at the following address: Apple Computer, Inc. Worldwide Disability Solutions Group 20525 Mariani Avenue MS 2-SE Cupertino, CA 95014 AppleLink = APPLEDSG America Online = APPLEDSG Internet = appledsg@applelink.apple.com 408-974-7910 (voice) 408-974-7911 (TDD) I downloaded the following information about Disability Solutions from AppleLink (inside the K-12 folder!): >About Disability Solutions The Disability Solutions area contains icons with information from AppleUs Worldwide Disability Solutions Group and from professionals in the field of adaptive technology. Refer to this area to gain insight into related events and state-of-the-art products used to customize Apple computers for use by individuals with disability. o The Empower BB bulletin board is an interactive forum for posing questions and answers related to technology and disability. (Please note that the bulletin board is now a Read/Write bulletin board so all users can and are encouraged to post messages.) The board houses a library of public domain software, an information reference area, and space for posting announcements of state-of-the-art products, resource materials, and referencematerials pertaining to specific disabilities and the use of technology. o The Access Solutions library provides information and product solutions for individuals with disabilities, their families, and the professionals who work with them. Included in the database are complete listings of the Macintosh Disability Resources (MDR), a catalog of every adaptive product for the Macintosh. o The Mac Education Software library contains a comprehensive listing of Macintosh educational software for use in schools and homes. The library contains information about courseware and administrative software. Many listings in the library include review sources rating the quality of individual products, and information on the sales and support policies of the publishers who sell the products. I thought this might be generally useful and have sent a copy to jdevereux@gcg.com. The ALS interest group is fantastic and has already provided my wife and I much needed information. Jeffrey D. Esko, Professor Department of Biochemistry & Molecular Genetics Schools of Medicine & Dentistry University of Alabama at Birmingham Birmngham, Alabama 35294-0005 Voice: (205) 934-6034 FAX: (205) 975-2547 (2) ===== MDA Research Report #47 ========== Date : 01 Jun 94 14:30:23 EDT >From : Barry Goldberg <71154.330@CompuServe.COM> Subject: MDA Research Report #47 This message was originally addressed to "Ray Harwood -- Data Basix: (602)721-1988" [RHarwood@Data.Basix.Com] and a carbon copy was sent to you. ---------------------------------------- Hi, Ray! Here's the latest MDA Research Report covering lots of areas. I figure you can either edit this into several messages or simply put it on the network. I'm also sending a copy to you, Bro, so you can pull out the information specific to the ALS Digest readers. Hope everyone finds this interesting. **** April 29, 1994 FROM: Norine Stirpe, Ph.D. Director of Research Development RE: Research Update #47 News Regarding Neurontin On April 7, 1994 MDA distributed a memo regarding neurontin (gabapentin) that described the drug's use as an anticonvulsant and its potential benefit for individuals with amyotrophic lateral sclerosis (ALS) due to the possibility that it may act similarly to riluzole. Further information has been obtained and it is necessary to emphasize that the exact mode of action of neurontin as an anticonvulsant medication is still not completely understood. One theory is that the drug acts by somehow inhibiting glutamate; however, this has yet to be demonstrated and the possibility is currently under investigation. The results of these experiments may not be available for several months. MDA is maintaining contact with the researchers who are evaluating the activity of neurontin and when we are informed of the conclusions that are drawn regarding the promise of neurontin in relation to ALS you will be promptly notified. Research Updates The physical abnormalities associated with phosphoglycerate kinase (PGK) deficiency vary from person to person and the clinical differences cannot be fully explained as yet. However, MDA researchers are showing that the disorder results from various types of defects in the PGK gene. The characteristics of the gene are fairly well known and, therefore, defects in its DNA sequence can be readily identified. Apparently, each of the different types of defects in the PGK gene can result in different presentations of the clinical signs of the disorder. MDA researchers recently described one case of the myopathic form of PGK deficiency. Individuals with myopathy resulting from defects in the PGK gene can experience an intolerance to intense exercise, muscle tenderness or pain and myoglobinuria (the presence of myoglobin, the oxygen-carrier of muscle, in urine). (Tsujino, S., et al., Annals of Neurology 1994; 35:349-353). Most individuals with phosphorylase b kinase (PbK) deficiency experience exercise intolerance, cramps and tenderness or pain in the muscles. MDA researchers recently published descriptions of several cases of PbK all characterized by a deficiency of the enzyme PbK in muscle. PbK is a complex protein that is made from a combination of four different parts, called subunits, each of which can exist in multiple forms. The researchers used tools that could specifically tag the subunits of the protein PbK in order to detect any differences in individuals with PbK deficiency. They found that the reduced levels of one subunit named gamma is associated with the most severe deficiencies in PbK, whereas the beta subunit was reduced in the cases of mild PbK deficiency. These findings help to explain the clinical and genetic variation seen in the disorder. (Wilkinson, D.A., et al., Neurology 1994; 44:461- 466). Several theories as to the cause of amyotrophic lateral sclerosis (ALS) have been explored; however, researchers have yet to arrive at any conclusions regarding most forms of the disease. Proof that environmental factors are involved has yet to materialize, although a recent report of four cases of ALS occurring in two married couples during the same time period in southern France is of interest. Clinicians observed that the onset and progression of the disease was different for each individual suggesting that one specific cause of ALS would not be responsible for the development of the disease in the two couples. No toxic factor was found associated with the two families and the researchers cannot exclude the fact that the cases may have arisen by chance. However, the scientists are following the relatives of these individuals closely in order to evaluate the possibility of whether genetic factors are involved. (Camu, W., et al., Neurology 1994; 44:547-548). MDA researchers have described a unique family with myasthenia gravis (MG). The parents are related and the scientists believe that a genetic mechanism is probably involved. They have tested several genes that could be affected, which included genes coding for proteins functioning as a part of the immune system. Most of the genes analyzed were found not to be associated with the disease in this family and other possible genes are still questionable. The results of this research indicate that genetic factors may play a role in MG. (Bergoffen, J., et al., Neurology 1994; 44:551-554). Myotonic dystrophy (DM) is caused by an unstable segment of repetitive DNA that is located in the DM protein kinase gene. Scientists have been trying to determine why the DNA repeats vary in size from one generation to the next and why they vary in different tissues within one individual. MDA researchers examined the size of the unstable DNA in various tissues in individuals with DM. They have found that changes in the repeat size can occur during the growth of the embryo and that the difference in the size of a repeat in a father's sperm versus those in the blood of his son or daughter can be quite different. Such variation in the size of the repeats must be kept in mind when assessing families affected by DM and when discussing with a family member the risks of developing the disease. (Jansen, G., et al., American Journal of Human Genetics 1994; 54:575-585). Muscular dystrophy research was a topic of discussion at the meeting, "Molecular Biology of Muscle Development" held last week in Utah as part of the Keystone Symposia. Scientists studying the factors that determine how and when muscle develops presented their latest findings. Investigators studying the controls for the dystrophin gene discussed the techniques that are being evaluated to design a gene therapy for Duchenne muscular dystrophy (DMD). Certain dystrophin mini-genes apparently have a great deal of promise based on their ability to provide the necessary protein to mice affected by muscular dystrophy (mdx mice). Whether these genes would be equally successful in humans is not known as yet. In order to deliver the dystrophin gene to where it is needed in the tissues of the body, viruses are being evaluated for their ability to carry the mini-genes and the full-length dystrophin gene. Versions of the virus called the adenovirus are being tested in the laboratory, and may have the most potential for success. Retroviruses, which have been associated with cancer, are not being pursued as a possible vector to carry the dystrophin gene. At this point, researchers are making progress toward establishing ways to ensure that the adenovirus delivers the dystrophin gene to cells in the body such that the gene remains permanently in the cell. Also, methods by which to block the natural immune response of the body to the adenovirus that is carrying the dystrophin gene are being explored. Clinical Trials It is believed that antioxidants might be capable of providing a protective effect and, therefore, some benefit to individuals with amyotrophic lateral sclerosis (ALS). A number of people have been self-medicating using antioxidants such as vitamins A, C and E, and presently a controlled clinical trial is being initiated in hopes of more accurately assessing the possible benefits of antioxidants. MDA-funded researcher Didier Cros, M.D. at Massachusetts General Hospital is currently recruiting individuals for his study. Participants can have either the genetic or sporadic form of ALS and they must meet the following criteria: be ambulatory; not have a slowly progressive form of the disease; have symptoms that developed less than two years before the time of entering the study; and be available for examinations in Boston every four weeks throughout the study. There are no age restrictions and no hospitalization should be involved. Anyone who is aware of possible participants for the study may contact Dr. Cros at Massachusetts General Hospital, Department of Neurology, EMG Unit - Bigelow 12, Boston, MA 02114, phone (617) 726-3642, fax (617) 726-2019. A clinical trial designed to test the effectiveness of dextromethorphan for individuals with amyotrophic lateral sclerosis (ALS) was being conducted at the Neuromuscular Research Unit at Tufts University School of Medicine under the direction of Dr. Theodore Munsat. During an analysis of the progress of the study it was determined that the drug was not significantly slowing the rate of progression of the loss of muscle strength in ALS. Due to their observation that there was no apparent benefit derived from dextromethorphan, the research group felt it best to terminate the clinical trial. cc: Bob Broedel -- ALS Interest Group [bro@huey.met.fsu.edu] --- MDA -- Working to find the cure for neuromuscular disease (3) ===== LOOKING FOR NEUROTROPHINS ========== Topic 1327 LOOKING FOR NEUROTROPHINS bionet.neuroscience 4:32 am May 25, 1994 HUBJS@LURE.LATROBE.EDU.AU I am looking for sources of neurotrophic factors - in particular CNTF, NT4/5, BDNF and ACTH/MSH (4-9) analogue. Send mail to: Hubjs@lure.latrobe.edu.au Thanks Topic 1327 LOOKING FOR NEUROTROPHINS Response 1 of 1 bionet.neuroscience 3:06 am May 25, 1994 springerj@HAL.HAHNEMANN.EDU CNTF and the neurotrophins are made by Regeneron, and the ACTH analogoues can be obtained from W. Gispen from the Rudolph Magnus Institute in Utrecht, The Netherlands (4) ===== NLM Technical Bulletin ========== Date : Fri, 27 May 1994 17:29:45 -0700 Sender : Medical Libraries Discussion List : >From : Laurie Potter Subject: NLM Technical Bulletin After seeing the notice in the Mar-Apr94 NLM Technical Bulletin on how to get the bulletin via ftp, I finally tried it today and it worked great! It prints out beautifully if you have a laser printer with PostScript. We were missing some 1993 issues and now we have them -and- it is easier to hole-punch single pages than the thick issues that come stapled in the mail. Here is how I did it: -anonymous ftp to: nlmpubs.nlm.nih.gov -change directory: cd /online/medlars/techbull (*they gave the wrong directory path in the Mar-Apr94 Bulletin article) -dir (to see the file names) or can print the INDEX -get mayjun93.ps (or whatever issue you want) -quit ftp -send the file to a postscript laser printer: type mayjun93.ps > prn I'm happy---Laurie Potter ********************************************************* * Laurie A. Potter * * Savitt Medical Library/306 * * University of Nevada School of Medicine * * Reno, NV 89557-0046 * * * * lap@unr.edu * * lap@shadow.bitnet * * voice: (702) 784-4625 * * fax: (702) 784-4489 * ********************************************************* (5) ===== calendar of meetings ========== >From : kathy@wubios.wustl.edu (Kathy Koepke) Subject: calendar of meetings To : alzheimer@wubios.wustl.edu (AD & Dementia Network) Date : Fri, 20 May 1994 16:02:37 -0500 (CDT) Sender : alzheimer-owner@wubios.wustl.edu AD Interest Calendar of Events ------------------------------ May 16-18, 1994 Home Care Association of New York State Annual Meeting Albany, NY Contact: Home Care Association of New York 21 Elk Street Albany, NY 12207 (518) 426-8764 May 18-21, 1994 American Geriatric Society Scientific Meeting Los Angeles, CA Contact: American Geriatric Society 770 Lexington Avenue, Suite 300 New York, NY 10021 (212) 308-1414 May 22-24, 1994 Annual Conference on Alzheimer's Disease and other Irreversible Dementias LaCrosse, WI Contact: Wisconsin Alzheimer's Information and Training Center 1300 South Layton Boulevard Milwaukee, WI 53215 (414) 645-4560 May 27, 1994 Annual University of Alabama-Birmingham (UAB) Alzheimer's Disease Center Conference Birmingham, AL Contact: UAB Alzheimer's Family Program 933 19th Street South, Room 201 Birmingham, AL 35294-2041 (205) 934-2178 June 10-15, 1994 Convention of the American Nurses Association San Antonio, TX Contact: Dawn Rhine American Nurses Association 600 Maryland Avenue SW, Suite 100 West Washington, DC 20024-2571 (202) 554-4444, ext. 182 June 15-17, 1994 Society for Ambulatory Care Professionals Annual Meeting Seattle, WA Contact: Society for Ambulatory Care Professionals of the American Hospital Association 840 North Lake Shore Drive Chicago, IL 60611 (312) 280-5970 June 23-24, 1994 "Alzheimer's Disease: Building Effective Communications" Sponsored by the National Institute on Aging and the Alzheimer's Association Washington, DC Contact: Janine Joyce 1801 Rockville Pike, Suite 500 Rockville, MD 20852 (301) 468-6555 June 25-28, 1994 American Optometric Association Annual Meeting Minneapolis, MN Contact: American Optometric Association 243 North Lindbergh Boulevard St. Louis, MO 63141-7881 (314) 991-4100 June 27, 1994 Senior Celebration Gaithersburg, MD Contact: Family and Nursing Care, Inc. 8555 16th Street Silver Spring, MD 20910 (301) 588-8200 June 30-July 3, 1994 American Psychological Society Convention Washington, DC Contact: American Psychological Society 1010 Vermont Avenue, NW Washington, DC 20005-4907 (202) 783-2077 July 7-10, 1994 National Nursing Staff Development Organization Convention Chicago, IL Contact: National Nursing Staff Development Organization 437 Twin Bay Drive Pensacola, FL 32534-1350 (904) 474-0995 July 9-13, 1994 American Occupational Therapy Association & Canadian Association of Occupational Therapists Combined Exposition Boston, MA Contact: American Occupational Therapy Association P.O. Box 1725 Rockville, MD 20849-1725 (301) 948-9626 July 16-22, 1994 Annual Wellness Conference Stevens Point, WI Contact: National Wellness Institute P.O. Box 827 Stevens Point, WI 54481-0827 (715) 342-2969 July 17-20, 1994 "Quality Alzheimer Care: Today's Strategies, Tomorrow's Solutions" Chicago, IL Contact: Alzheimer's Association 919 North Michigan Avenue Chicago, IL 60611-1676 (312) 335-5790 July 24-27, 1994 National Medical Association Convention and Scientific Assembly Orlando, FL Contact: National Medical Association 1012 10th Street, NW Washington, DC 20001-4492 (202) 347-1895 July 29 - August 3, 1994 International Conference on Alzheimer's Disease and Related Disorders Minneapolis, MN Contact: Executive Convener GRECC (11G) VA Medical Center Minneapolis, MN 55417 (612) 725-2000 August 5-9, 1994 American Sociological Association Meeting of the Research Committee for Alzheimer's Disease and Caregiver Stress, Section on Sociology of Aging Los Angeles, CA Contact: The University of Akron Dept. of Sociology and the Institute For LifeSpan Development and Gerontology Olin Hall 270 Akron, OH 44325-1905 (216) 972-7481 August 8-10, 1994 American Hospital Association and Texas Hospital Association Joint Convention Dallas, TX Contact: American Hospital Association 840 North Lake Shore Drive Chicago, IL 60611 (312) 541-0567 August 19 & 20, 1994 Alzheimer's and Family Issues for the Professional The Lodge of the Four Seasons Resort; Lake Ozark, MO Contact: Washington University Alzheimer's Disease Research Center Campus Box 8111-ADRC 660 S. Euclid Avenue St. Louis, MO 63110-1093 (314) 362-2881 (request Kathy or Mary) August 22-25, 1994 Florida Aging Network Conference Orlando, FL Contact: Florida Council on Aging 1018 Thomasville Road, Suite 110 Tallahassee, FL 32303 (904) 222-8877 September 21-23, 1994 International Conference of Alzheimer's Disease International Edinburgh, Scotland Contact: Conference Secretariat CEP Consultants Ltd. 26-28 Albany Street Edinburgh EH1 3QH, Scotland, UK 44-031-557-2478 September 22-24, 1994 American Association of Office Nurses Annual Meeting New Orleans, LA Contact: American Association of Office Nurses 109 Kinderkamack Road Montvale, NJ 07645 (201) 391-2600 September 25-27, 1994 National Organization for Associate Degree Nursing Conference San Antonio, TX Contact: National Organization for Associate Degree Nursing 1730 North Lynn Street Suite 502 Arlington, VA 22209 (703) 525-1191 October 9-12, 1994 Southeastern Association of Area Agencies on Aging Meeting Louisville, KY Contact: Buffalo Trace Area Development District 327 West 2nd Street P.O. Box 460 Maysville, KY 41056 (606) 565-6894 October 19-22, 1994 National Hospice Organizations Symposium Washington, DC Contact: National Hospice Organization 1901 North Moore Street, Suite 901 Arlington, VA 22209 (703) 243-5900 October 22-23, 1994 "As the World Ages, Health Care is Homeward Bound" Chicago, IL Contact: World Organization for Care on the Home and Hospice 519 C Street, NE Washington, DC 20002-5809 (202) 546-4756 October 22-26, 1994 National Association for Home Care Annual Meeting Chicago, IL Contact: National Association for Home Care 519 C Street, NE Washington, DC 20002-5809 (202) 547-7424 October 23-26, 1994 Annual Southwest Society on Aging Conference Tulsa, OK Contact: Southwest Society on Aging P.O. Box 13346 University of North Texas Denton, TX 76203-6346 (817) 565-2823 October 23-27, 1994 American College of Rheumatology Annual Convention Minneapolis, MN Contact: American College of Rheumatology c/o Slack Incorporated 6900 Grove Road Thorofare, NJ 08086 (609) 848-1000 October 27, 1994 International Conference on Prevention Charleston, WV Contact: Center for the Study of Aging 706 Madison Avenue Albany, NY 12208 (518) 462-8105 October 30-November 3, 1994 American Public Health Association Meeting and Exhibit Show Washington, DC Contact: Convention Department American Public Health Association 1015 15th Street, NW Washington, DC 20005 November 4-5, 1994 North Carolina Academy of Physician Assistants Minority Affairs Committee Symposium Research Triangle Park, NC Contact: James Carter North Carolina Academy of Physician Assistants Minority Affairs Committee 3 Mattie Court Durham, NC 27704-1551 (919) 684-8111 November 7-10, 1994 American Association of Homes for the Aging Meeting and Exposition Orlando, FL Contact: American Association of Homes for the Aging 901 E Street NW, Suite 500 Washington, DC 20004-2037 (202) 508-9400 November 18-22, 1994 Gerontological Society of America Annual Meeting Atlanta, GA Contact: Gerontological Society of America 1275 K Street, NW Suite 350 Washington, DC 20005-4006 (202) 842-1275 December 12-14, 1994 American College of Health Care Administrators Winter Marketplace Las Vegas, NV Contact: American College of Health Care Administrators 325 South Patrick Street Alexandria, VA 22314-3571 (703) 549-5822 == end of als 104 ==