=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #843 (26 April 2001) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == 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 == == 4700+ subscribers in 70+ countries. Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed. This newsletter is not intended to == == provide medical advice on individual health matters. == == Any such advice should be obtained personally from a == == physician. == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@met.fsu.edu (Bob Broedel) == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://www.glnicholas.com/ == == http://www.alslinks.com == == http://www.alssurvivalguide.com == == http://cc4144-a.ensch1.ov.nl.home.com/~digest == == http://health.oldeman.net == =============================================================== CONTENTS OF THIS ISSUE: 1 .. "ALS Research, Building a Future on Hope" 2 .. Lou Gehrig's Disease Run 3 .. Differential expression of 14 genes in ALS ... 4 .. Intraventricular gamma-globulin ... 5 .. Lew Blond Memorial Run 6 .. alternative stem cell sources 7 .. Question about Cyberlink 8 .. re: Lightwriter 9 .. Taking responsibility for your own destiny ... (1) ===== "ALS Research, Building a Future on Hope" ========== >From : "Jane McCarthy" Subject: Please post on digest Date : Thu, 26 Apr 2001 Please plan to attend the Fifth Annual Educational Symposium, "ALS Research, Building a Future on Hope" sponsored by The ALS Association, Greater Los Angeles Chapter, May 5, 2001. The symposium will be held in Culver City, CA, at the Radisson Hotel from 8:30 am-4:00pm. There is no charge to attend. Lunch is provided and parking is available for $4.00. Speakers include Drs. Deborah Gelinas, Micheal Graves, Robert Sufit, Nick Maragakis, and Martina Weidau-Pazos, Linda Boynton-de Sepulveda, PhD RN, Lora Clawson RN, MN, CNP, Maura Del Bene, MS, RN, NP-P, and Nailah Siddique, RN, MSN. These expert presenters will discuss nerve growth factors, participation in clinical trials, genetics, the ethical dilemma of disclosing genetic information, the virus-ALS relationship, stem cell research, implications of new bench research in clinical practice, alternative therapies, and identifying quackery from therapy. A vendor showcase is also part of the program. RSVP is required. For more information or to make a reservation as soon as possible, please contact Molly Rockey at the Chapter Office at (818) 865-8067, or e-mail the chapter at ALSAGLAC@aol.com. Please join us for this most informative educational event. (2) ===== Lou Gehrig's Disease Run ========== >From : PackmanK@gtlaw.com Subject: Date : Tue, 24 Apr 2001 FOR IMMEDIATE RELEASE CONTACT: Lisa Treister Kreps/DeMaria/Treister TEL: (305) 663-3543 E-M: lltreister@krepspr.com ALS RECOVERY FOUNDATION AND MIAMI RUNNERS CLUB TO SPONSOR LOU GEHRIG'S DISEASE 10K RUN AND 5K RUN/WALK Event to Raise Funds and Awareness for Fatal Neuromuscular Disease MIAMI, FL (March 27, 2001) - The ALS Recovery Foundation announced today that it will sponsor the Lou Gehrig's Disease 10K Run and 5K Run/Walk on Saturday, May 12 at Dinner Key Marina, Pan American Drive, Coconut Grove. Registration begins at 6:30 a.m.; walk/run begins at 7:30 a.m. An awards ceremony will be held at 9:30 a.m. With advance registration, the entry fee is free for children 14 and under; $12 for Miami Runners Club members and children 12-18; and $15 for all others. Same-day registration is $20. The run/walk, co-sponsored by the Miami Runner's Club, will follow a course north on Tigertail Avenue and then south on South Bayshore Drive, ending at Monty's Restaurant, located at 2550 South Bayshore Drive, Coconut Grove. The top finishers in a variety of categories will be given awards during the ceremony following the race. Participants with pledges totaling more than $100 will receive free race entry and will be entered into a drawing to win a seven-day cruise for two on Norwegian Cruise Lines, a weekend at Sandals Resort, or two round-trip tickets anywhere in the U.S. on American Airlines. The Y-100 van and D-Js will be at the event in addition to massage therapists and clowns painting faces at no charge. Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease, is a fatal neuromuscular disease first discovered in 1869. It eventually affects the individual's ability to breathe, talk, eat and care for him or herself. The average life expectancy after diagnosis is 2-5 years. There is no known cause or cure. The ALS Recovery Foundation, a grassroots not-for-profit organization run by volunteers, is committed to creating public awareness, promoting research and education, and raising funds in order to find a cure for this life-threatening disease. Proceeds from the race will also be used to further the quality of care for ALS patients living in South Florida. Members of The ALS Recovery Foundation Advisory Board include Antonio L. Argiz, Walter G. Bradley DM FRCP, Romero Britto, Simon Frank, M.D., Phil Frost, M.D., Senator Bob Graham, Norman Lipoff, Esq., Howard Lucas, Ritchie Lucas, Miriam Lopez, Manny Medina, Edward Sternlieb, and Brian L. Weiss, M.D. The Platinum level event sponsor are the Friends of Bobby Singer; Gold level sponsor is JERZEES; Silver level sponsors are the Friends of Ben Leuchter, Friends of Bruce Packman, Beaches and Sandals; Bronze level sponsors are Aventis Pharmaceuticals, Arvida Realty, Baptist Hospital, Executive Printers, Kreps/DeMaria/Treister Public Relations & Marketing, McKinney-Brown Advertising, Inc., and TransAtlantic Bank; Copper level sponsors are MetroBank, Ocean Bank, Navix, Morrison Brown Argiz & Co, StrataSys, Lexis-Nexis, Grusky Chiropractic Center, Pinecrest Health & Fitness, de la O & Marko, Greenberg Traurig, P.A., Captured Glory, Goldstein Schechter Price Lucas Horwitz, Stephanie Freer, Catalano's Nurses Registry, Buchanan Ingersoll, Norwegian Cruise Lines, American Airlines, the Florida Panthers and the Miami Dolphins; Media Sponsors are Y-100, Radio Disney, Channel 10, Channel 23 and The Miami Herald. Participants can register in person at Runner's High, 11209 S. Dixie Highway, Miami, or online at www.active.com. To register by mail, contact The Miami Runners Club, Tropical Park, 7920 SW 40th St., Miami, FL 33155 or the ALS Recovery Foundation, 555 NE 34th Street, Suite 1103, Miami, FL 33137. For more information, call (305) 227-1500 or (305) 573-0936. (3) ===== Differential expression of 14 genes in ALS ... ========== Date : Wed, 25 Apr 2001 >From : Will Hubben Subject: Differential expression of 14 genes in amyotrophic lateral : sclerosis spinal cord detected using gridded cDNA arrays. Differential expression of 14 genes in amyotrophic lateral sclerosis spinal cord detected using gridded cDNA arrays. Malaspina A, Kaushik N, de Belleroche J. J Neurochem 2001 Apr;77(1):132-45 Department of Neuromuscular Diseases, Division of Neuroscience and Psychological Medicine, Imperial College School of Medicine, London, UK Foundation 'Casimiro Mondino', University of Pavia, Italy. In order to obtain insight into the aetiology and pathogenesis of amyotrophic lateral sclerosis (ALS), high-density gene discovery arrays (GDA human version 1.2) containing 18 400 non-redundant EST cDNAs pooled from different tissue libraries have been used to monitor gene expression in lumbar spinal cord from ALS cases compared with controls. Quantitative filter analysis revealed differential expression of cDNAs normalized to internal standards. These candidates have been further investigated and their expression in spinal cord characterized in a panel of ALS and control subjects. Significant differential expression was obtained for 14 genes, 13 being elevated (up to six-fold) and one decreased (by 80%) in ALS. Amongst those elevated in ALS were thioredoxin and glial fibrilary acid protein, which have already been shown to be up-regulated in ALS, thus supporting the reliability of this approach. The other differentially regulated transcripts confirmed in the expression studies represent potential candidates in ALS pathogenesis being involved in antioxidant systems, neuroinflammation, the regulation of motor neurone function, lipid metabolism, protease inhibition and protection against apoptosis. The use of the GDA system has greatly facilitated the screening and retrieval of sequence information and has generated useful information on the cascade of molecular events occurring in ALS and potentially may highlight new candidates playing a role in the aetiology and progression of this disease. PMID: 11279269; [PubMed - indexed for MEDLINE] --------------------------- Will Hubben whubben@earthlink.net (4) ===== Intraventricular gamma-globulin ========== Date : Wed, 25 Apr 2001 >From : Will Hubben Subject: Citation for: Intraventricular gamma-globulin for the management : of enterovirus encephalitis Pediatr Infect Dis J 1988 May;7(5 Suppl):S30-3 PubMed abstract url: http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?CMD=Display&DB=PubMed Intraventricular gamma-globulin for the management of enterovirus encephalitis. Dwyer JM, Erlendsson K. Department of Clinical Immunology, Yale University School of Medicine, New Haven, CT. Although bacterial infections predominate in patients with hypogammaglobulinemia, patients who do not produce normal amounts of immunoglobulin also have an increased incidence of viral infections. This is particularly true of infections with enteroviruses. Echovirus encephalitis has been a major problem for patients with hypogammaglobulinemia. Neurologic damage, frequently resulting in death, has been common in such patients. Because there is an obligatory extracellular phase in the cell to cell spread of enteroviruses, therapy with immunoglobulin has been attempted. In certain patients intravenous and intrathecal gammaglobulin has temporarily halted progression of the disease, but no patients have been cured by this approach. In this report we detail treatment of three children with X-linked hypogammaglobulinemia who had encephalitis caused by echovirus infections. Despite doses of intravenous immunoglobulin that maintained the patients' IgG levels within the normal range, their condition deteriorated in all cases. Treatment with intraventricular immunoglobulin was then tried. In all three cases cerebrospinal fluid protein levels and cell counts returned to normal after this treatment and the echoviruses can no longer be isolated from the cerebrospinal fluid. Follow-up time has ranged from 18 months to 4 years. Ommaya reservoirs were placed into the lateral ventricle of each patient and concentrated (6%) immunoglobulin (Sandoglobulin) was injected into the reservoir on a daily basis. On Days 1 through 7 of the regimen patients were given 120, 300, 450, 510, 540 and 600 mg of IgG, respectively. Patients then received 300 mg daily for periods ranging from 1 week to 1 month. Cultures of cerebrospinal fluid removed from the reservoir were repeatedly analyzed to determine the need for further treatment. Clinically the patients improved markedly. (ABSTRACT TRUNCATED AT 250 WORDS) --------------------------- Will Hubben whubben@earthlink.net (5) ===== Lew Blond Memorial Run ========== Date : Thu, 26 Apr 2001 >From : Les Turner ALS Foundation Subject: Lew Blond Memorial Run in Northbrook, IL The Northbrook/Glenview School District 30 invites you to participate in the Lew Blond Memorial Run in Northbrook, Illinois on Saturday, June 2, 2001 at 7:30 a.m. The event will consist of a 5K run/walk and a 1-mile fun run and is being coordinated by the District 30 Education Foundation with the assistance of the Les Turner ALS Foundation. This event is in recognition of Lew Blond, former Maple School teacher who passed away from ALS in February 2000. Mr. Blond was an exceptional and dedicated educator of the applied arts and was revered and cherished by his students, colleagues and parents of the children he served. Funds raised will be presented as scholarships to seniors at Glenbrook North and South High Schools, will help develop a new applied technology classroom at Maple School, and be donated to the Les Turner ALS Foundation. If you would like to receive an entry form, please contact the Les Turner ALS Foundation by reply email or call 847-679-3312 x.16. You may also register on-line at www.chicagoevents.com. -- Les Turner ALS Foundation 8142 N. Lawndale Avenue Skokie, IL 60076-3322 Phone: 847-679-3311 Fax: 847-679-9109 www.lesturnerals.org (6) ===== alternative stem cell sources ========== Date : Mon, 16 Apr 2001 >From : Will Hubben Subject: More work on alternative stem cell sources : 2 Reuters Health stories New Jersey Company Gathers Stem Cells From Placentas NEW YORK (Reuters Health) Apr 12 - A New Jersey company has announced that it can harvest stem cells from a controversy-free source: the human placenta. Anthrogenesis Corp., of Cedar Knolls, announced Wednesday that it has been able to collect 10 times as many stem cells from a placenta as can be gathered from an umbilical cord. The 3-year-old company has a proprietary technology for removing blood from the placenta, sustaining the organ in the laboratory and then recovering the cells several hours or days later. Placenta-derived cells have the same cell-surface molecules as other stem cells used in research, the company's chief scientific officer, Dr. Robert J. Hariri, told Reuters Health. Dr. Hariri invented the harvesting technology. While the company has not yet published any information on the stem cells, he said, it expects to do so within "a few months." The company issued a press release rather than waiting to publish its research, Dr. Hariri said, because of the great need for alternative stem-cell sources. He commented that the company is looking for collaborators who could help speed up the research and development process. Dr. Hariri and his colleagues are now engaged in determining placenta stem cells' potential for differentiation. Anthrogenesis is working with other organizations to test the cells in the treatment of amyotrophic lateral sclerosis and some cancers, and in other types of regenerative medicine, Dr. Hariri said. -------------------------------------------------------------------- Scientists Harvest Stem Cells From Nasal Tissue WESTPORT, CT (Reuters Health) Apr 06 - Researchers from the University of Louisville Health Sciences Center reported this week in Orlando that they have successfully harvested stem cells from the olfactory neuroepithelium of human cadavers. Lead investigator Dr. Fred Roisen said in an interview with Reuters Health during the meeting of Experimental Biology 2001 that his group demonstrated that the cells harvested from cadavers remain viable and can be reproduced in the laboratory. So far, "we have reproduced the cells for 100 or more cycles," he said. The cells have remained viable for as long as 16 months, Dr. Roisen said. The stem cells from olfactory neuroepithelium develop into either neurons or myelin, making them potential components in therapy for Alzheimer's disease and Parkinson's disease or multiple sclerosis and spinal cord injuries. He added that it will be at least 5 years before he can test these treatments in humans. Dr. Roisen noted that if his research proves successful, "we can use a person's own cells to treat disease or injury." --------------------------- Will Hubben whubben@earthlink.net (7) ===== Question about Cyberlink ========== >From : JCorradine@aol.com Date : Wed, 25 Apr 2001 Subject: Question about Cyberlink My husband has been using EZKeys with an infrared switch and a movement sensor. He is having problems using it due the only movement he has in a little in his jaw and some in his eyes. We are looking for a brainwaives system and to make the best decition we want to know if there is a PALS using cyberlink or mactos to communicate. Any input will be usefull. Maria (8) ===== re: Lightwriter ========== Date : Wed, 25 Apr 2001 >From : Sally Subject: Lightwriter The Light writer is often available free of charge from various ALS foundations -to use - as long as needed then gets returned to them to pass on to another who needs it. Check with your local ALS foundations. Sometimes there is a wait til one is available. (9) ===== Taking responsibility for your own destiny ... ========== >From : Kjoadvocate@aol.com Date : Tue, 17 Apr 2001 Subject: Ride For Life- For Immediate Release Ride for Life is sponsoring an interactive seminar by James Heywood, of The ALS Therapy Foundation, on May 6th, 2001 in New York. The title of Mr. Heywoods presentation is:" Taking responsibility for your own destiny at the intersection of medicine, research aand advocacy." This is part of a weeklong series of awreness and fundraising events in the New York area from April 28th through May 6th,2001. This presentation will discuss the relationship between research and medicine and what ALS patients can do to be more aggressive in pursuing new approaches and ideas. The seminar will focus on treatments and current theories of ALS in clear, non-scientific terminology. The seminar will discuss findings from current studies in animal models at ALS TDF and what patients can do with this information. The seminar is designed for ALS patients, caregivers and members of the medical community. Registration is required. For details visit the Ride for Life website ( www.rideforlife.com ) or by calling Ken O'Donnell,Member of RFL Board at 314-993-4181. The seminar is free. Thanks in advance for your cooperation. Regards, Ken O'Donnell, Advocate for a cure for Amyotrophic Lateral Sclerosis Phone 314-993-4181 or 314-749-4918 Email kjoadvocate@aol.com === end of alsd 843 ===