=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #778 (15 December 2000) == == == == ------ 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 == == 4500+ 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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@huey.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.brunel.ac.uk/~hssrsdn/alsig/ == == http://www.glnicholas.com/ == == http://cc4144-a.ensch1.ov.nl.home.com/~digest == == http://health.oldeman.net == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Breaking News 2 .. Television Alert 3 .. Maltese in Canada and the US with ALS 4 .. Kelly-ALS questions 5 .. Beneficial effect of genseng root on ALS 6 .. Care for Life Grants 7 .. ALS Therapy Development Foundation 8 .. MA Chapter ALS Association - Milton Support Group 9 .. MA Chapter ALS Association - New Programs (1) ===== Breaking News ========== >From : "Carol Levey" Subject: Breaking News Date : Fri, 15 Dec 2000 16:32:35 -0800 >From : Mike Havlicek, President, The ALS Association To : The ALS Community Re : Breaking News about ALS-Specific Legislation Date : December 15, 2000 I can't adequately express my joy for the success achieved today by the entire ALS community. Nor can I sufficiently express my gratitude for all of you who contributed so importantly to that success. Our collective success belongs to everyone of you who told your story, wrote or called your Congressperson and Senator and attended National ALS Advocacy Day. The success belongs as well to those compassionate Senators and House Members who listened to and heard your stories, who really practiced bi-partisanship and who acted in the best interest of people in need. A wrong has been made right. Let's all take pleasure in it and be inspired by what we can accomplish together! I would like to share with you ALSA's official announcement.... Breaking News - From ALSA's National Office FOR IMMEDIATE RELEASE Contact: Carol Levey December 15, 2000 (818) 880-9007 x220 mediarelations@alsa-national.org ALS-Specific Legislation Approved By Both Houses of Congress 24-month waiting period waived for people diagnosed with Lou Gehrig's disease Today, the United States Senate and House of Representatives voted to waive the current 24-month waiting period for Medicare coverage of people diagnosed with Lou Gehrig's disease (ALS), as part of the fiscal year 2001 spending bill (H.R. 4577) for labor, health and human services, and education. This is an historic victory for the ALS community. This legislation, authored by Senator Robert Torricelli (D-NJ) and Congresswoman Lois Capps (D-CA), garnered bi-partisan support from 282 co-sponsors in the House and 28 in the Senate. As the 106th Congress drew to a close, both authors rallied their constituents to attach this waiver to the Medicare give-back. "The ALS Association is extremely grateful to bill authors Senator Robert Torricelli (D-NJ) and Congresswoman Lois Capps (D-CA) for their determined efforts on behalf of the ALS community," stated Mike Havlicek, president of The ALS Association. "Their stewardship of this bill, along with the bi-partisan support of their colleagues, helped ratify this first-ever ALS-specific legislation to help those affected by the disease." A common problem for individuals stricken with ALS is that, due to the progressive nature of the disease, and the lack of diagnostic tests, a final diagnosis is often made only after a year or more of symptoms and searching for answers. Once a diagnosis is finally made, the tragedy is needlessly worsened by having to wait 24 months for coverage of the care they so desperately need. Elimination of this waiting period will positively affect the lives of people with ALS, and provide them access to care they may not otherwise have been able to receive under the current law. "Because of the hard work and perseverance of ALS patients, their families, and The ALS Association, Medicare will now cover ALS patients when they become ill," said Congresswoman Lois Capps. "I have been inspired by their stories and feel honored to have introduced this legislation on their behalf. Much more remains to be done, but today Congress has helped thousands of patients and families struggling with this devastating disease." "It has been almost three years since I began this fight on behalf of ALS patients," said Senator Robert Torricelli. "I am extremely proud that the day has finally come to eliminate this arbitrary and cruel restriction. This tremendous victory is long overdue and will literally improve the lives of thousands of people struggling to cope with the horrors of ALS. It will mean that no ALS patient will ever again be faced with the indignity of going bankrupt while waiting for Medicare assistance." No specific timetable has been announced for this waiver to go into effect. Further information about the implementation of this law will be announced in the near future. The ALS Association is the only national not-for-profit voluntary health organization dedicated solely to the fight against ALS through research, patient support, information dissemination and public awareness. For more information about ALS, please visit www.alsa.org. For questions regarding the bill, contact Steve Gibson, ALSA's Vice President, Government Relations and Public Affairs at 202-638-6997. (2) ===== Television Alert ========== >From : "Carol Levey" Subject: Submission for ALS Digest Date : Fri, 15 Dec 2000 11:27:07 -0800 Television Alert - From ALSA's National Office FOR IMMEDIATE RELEASE Contact: Carol Levey (818) 880-9007 x220 December 14, 2000 Lifetime Television's "Strong Medicine" Airs Episode with ALS Storyline Sunday, December 17th 8pm ET/PT Saturday, December 23rd 11pm ET/PT Lifetime Television's news series "Strong Medicine" will feature a storyline about ALS in next week's episode, entitled "Side Effects." The story is that an employee is assumed to be drunk on the job and is fired. The employee is later diagnosed as having ALS (Lou Gehrig's disease). The episode explores how the employee shares the news with her family, and what the hospital does to help her through this difficult time. The ALS Association was contacted by the show's production company to learn more about ALS. ALSA arranged access to an ALS patient who would share their story for the web site, and a medical expert on ALS to answer key questions about the disease. Shelbie Oppenheimer, an ALS patient from ALSA's Greater Philadelphia Chapter, will be featured on the show's web site (www.lifetimetv.com/strongmedicine) throughout the week the episode airs. In addition, Dr. Leo McCluskey, Medical Director of The ALS Center at Penn Neurological Institute, will be featured as the medical expert. His answers to questions posed by the show's producers will also appear on the show's web site. ALSA is grateful to Shelbie and Dr. McCluskey for agreeing to participate in the web site portion of this episode. In addition, ALSA thanks the producers of "Strong Medicine" for dedicating a show to this important storyline, helping raise awareness, and educating the public about the disease and the efforts of The ALS Association. Please check your local listings for the time and cable station on which Lifetime Television appears. (3) ===== Maltese in Canada and the US with ALS ========== >From : "Vivian Wyatt" Date : Thu, 14 Dec 2000 18:14:31 -0000 Subject: Maltese in Canada and the US with ALS I am searching for Maltese, both present and past with ALS. If you know of any, please get in touch with me. I have located 136 from Malta, Australia and the UK so far, but none from Canada. My study is on genetic susceptibility and so far indicates that some are closely related to old polios. My research has been approved by the Registrar General as suitable for receiving personal information. I will supply further information to those interested. Dr HV Wyatt, Honorary Research Fellow in Public Health Medicine, University of Leeds, England Vivian Wyatt (4) ===== Kelly-ALS questions ========== >From : PegMCKPT@aol.com Date : Mon, 11 Dec 2000 09:50:14 EST Subject: Kelly-ALS questions In response to the many questions, I have been asked, I am writing to all with the following: ** The epidemiological study of the incidence/prevalence of ALS among Kelly civilian workers will, indeed, take quite a long time to sort out. There will be a shorter report called a "mortality study" that will look at death certificates of all Kelly personnel in the past 20 years. This is only one point of view--since death certificates may not necessarily list ALS as the primary cause of death. Such things as respiratory or cardiac failure might be listed as the primary cause and ALS might be listed as a secondary or contributing diagnosis. It is unknown, yet, if the study will branch out to other bases. It is certainly a possibility, but the problem would be $$$ and personnel to carry out the study. This is definitely an opportunity to conduct an extensive epidemiological study that has never really been conducted on patterns of ALS. And that would still probably be limited to the USA. I have had folks contact me to indicate that there have been other military bases with an apparent increase in incidence of ALS. That does not mean it is true--it must be looked at by those who know how to sort out the incidence rates--remember the incidence of ALS increases as the population ages. However, for those who have asked, you can rest assured that if it does branch out, I will make sure this site is notified and ask for folks to come forward to answer the questionnaire. At this time, though, the best I can offer is that you send me a private email asking to be kept on my email tree for news on this issue. For those who have written asking for the details of such things as how many people worked there, where did they work, how old were they, when did they get ALS, etc., please do not ask. While I do know that information, it only adds to the confusion to release such information before it is looked at scientifically. My job, from the beginning, and even now, is to find folks with ALS who have worked at Kelly in the past so we can get the questionnaire to them. I appreciate your understanding. Peggy McKinley ALSA/ South Texas Advocacy Chair (5) ===== Beneficial effect of genseng root on ALS ========== >From : dasroster@aol.computer (KGH) Newsgroups: sci.med.diseases.als Date : 29 Nov 2000 19:57:40 GMT Subject : Beneficial effect of ginseng root in ALS Beneficial effect of ginseng root in ALS Beneficial effect of ginseng root in SOD-1 (G93A) transgenic mice. Jiang F, DeSilva S, Turnbull J McMaster University Medical Centre, Rm 4U7, 1200 Main St W, Ontario, L8N 3Z5, Hamilton, Canada [Record supplied by publisher] Many patients with amyotrophic lateral sclerosis (ALS; motor neuron disease) use natural or traditional therapies of unproven benefit. One such therapy is ginseng root. However, in some other disease models, ginseng has proven efficacious. Ginseng improves learning and memory in rats, and reduces neuronal death following transient cerebral ischemia. These effects of ginseng have been related to increases in the expression of nerve growth factor and its high affinity receptor in the rat brain, and antioxidant actions, inter alia. Since such actions could be beneficial in ALS as well, we studied the effect of ginseng (Panax quinquefolium), 40 and 80 mg/Kg, in B6SJL-TgN(SOD1-G93A)1Gur transgenic mice. The ginseng was given in drinking water, from age 30d onwards. We measured the time to onset of signs of motor impairment, and survival. There was no difference between the two ginseng groups (n=6, 6) in either measure. However, compared to controls (n=13), there was a prolongation in onset of signs (116d vs. 94d, P<0.001), and survival (139d vs. 132d, P<0.05). These experiments lend support to the use of ginseng root in ALS. Future experiments using this model could examine for symptomatic effects of ginseng, measure the effect of specific ginsenosides (which differ between ginseng species), and elucidate their mechanisms of action. PMID: 11090864 http://www.kylehahn.com (6) ===== Care for Life Grants ========== >From : "Bob C." Subject: Care for Life Grants Date : Mon, 4 Dec 2000 20:47:14 -0500 Ride for Life - ALS News & Information Update - http://www.rideforlife.com 'Care for Life' Applications Now Being Accepted Free, limited in-home respite care for people living with ALS. Ride For Life, Inc. is pleased to announce the second round of our very successful "Care for Life" program, which provides free, limited, in-home respite care for qualifying ALS patients. Care for Life will greatly assist families by easing the strain, which many face when dealing with ALS because of the lack of respite care from their health insurance provider. For a period of four weeks, from December 1 until December 31, 2000, Ride for Life, Inc. will be accepting applications from interested people. ALS patients, or their caregivers may apply. All applications must be printed from our website, be completely and correctly filled out, and postmarked by December 31, 2000. During this phase of the program, seven (7) ALS patients will be selected in a random drawing of elegible applications to be held in January 2001. Each grant is worth up to $1440.00. Don't miss this very important opportunity to participate in this program. Apply today! Go to http://www.rideforlife.com for more information and a printable application. If you have any questions about the Care for Life program, email us at careforlife@rideforlife.com. Please feel free to distribute this information to other ALS organizations and support groups. We realize that not all ALS patients have access to the Internet and we would like to provide everyone with an opportunity to participate. Thank you. Ride for Life Patient Services Committee Nancy Venditti,Chairperson Connie Zolnay, Liaison Paul Johnson, R.N., Member Pat Warren, R.N., Member Ride for Life is a not-for-profit organization dedicated to the support of people living with ALS. (7) ===== ALS Therapy Development Foundation ========== >From : Rebecca Heidgerd Subject: Posting for ALS Digest by the ALS Therapy Development Foundation Date : Thu, 14 Dec 2000 10:01:17 -0500 The ALS Therapy Development Foundation would like to announce the mailing of their latest newsletter to the ALS patient community. The newsletter rolls out the Foundation's latest venture, an in-house In-Vivo Screening Program that will test FDA-approved drugs for their efficacy in ALS. Updates on ALS-TDF'S other research ventures are also included in the mailing, including work with gene therapies, stem cells, antibody research and more. ALS-TDF is a nonprofit biotechnology company, working on behalf of ALS patients alive today to find effective therapies for the disease as quickly as possible by building a bridge between the research and development processes. Collaborating with top ALS researchers and scientists from around the globe, the Foundation uses information already known about ALS to seek out therapies to slow or stop the disease. For more information on ALS-TDF, to find out how you can aid their work or to be added to the mailing list, please visit www.als-tdf.org. (8) ===== MA Chapter ALS Association - Milton Support Group ========== >From : BTep100@aol.com Date : Thu, 14 Dec 2000 17:32:38 EST Subject: MA Chapter ALS Association-Milton Support Group MA Chapter ALS Association-Milton Support Group Location: Milton Healthcare Facility, 1200 Brush Hill Road, Milton, MA Date: Wednesday, December 20th Time: 7:00-8:30 p.m. Please join us for a delightful holiday party. There will be time to socialize and meet with group leaders for individual case management. Bring friends and relatives. All are welcome. New participants need to call Judy Teplow, Director of Patient Services, at 781-828-6519. Directions: Route 128 to the Route 138 Milton Exit. After the Blue Hills Ski Area and Trailside Museum, bear right at Canton Avenue. Take the next left onto Brush Hill Road. We're located about 3/4 of a mile on your right. (9) ===== MA Chapter ALS Association - New Programs ========== >From : BTep100@aol.com Date : Thu, 14 Dec 2000 22:08:34 EST Subject: MA Chapter ALS Association-New Programs MA Chapter ALS Association-New Programs Pilot Friendly Visitor Program The MA Chapter ALS Association, in conjunction with Match-Up Interfaith Volunteers and Simmons College School of Nursing, is starting a pilot Friendly Visitor Program in January. It will run from mid January to early May. Nineteen Simmons College student nurses who have enrolled in the course, "Nursing Care of Individuals, Families and Communities" will be matched up with ALS families in the Boston area. The students will be supervised and will visit with families 2 hours a week. They will not be allowed to provide hands-on or assistance to patients, but can provide companionship and support, run errands, do light tidying, grocery shop, do laundry, make meals, read aloud and advocate for patients. Volunteers may help with almost anything a friend might do for another. Families must reside in the Greater Boston area and must have a caregiver present in the home when the student volunteer visits. Those families who are interested can call Judy Teplow at 781-828-6519. Children's Program The MA Chapter ALS Association has received donations earmarked for a children's fund. The fund could provide partial financial assistance for such programs as daycare, preschool, after school community programs, summer camp and therapy. We are in the process of doing an assessment to determine the number of families interested and the needs of their children. If you are interested in obtaining funding or know another ALS family who could benefit, please call Judy Teplow at 781-828-6519. === end of alsd 778 ===