=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#60, 11 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) ===== Editorial (a repeat) ========== One way to make this network useful is for people to introduce themselves so others know of their interests, background, needs, experiences, expectations of the net, etc. Future issues of ALS DIGEST will include an introduction section. All subscribers are asked (not required) to send a brief note about themselves that is to be published in future issues. Please send to: bro@huey.met.fsu.edu and mark the subject line with ALS-INTRO. (2) ===== building the ALS e-mail network ========== From: fu03c2dj@fub46.zedat.fu-berlin.de (Sunkyo Kwon) Date: Fri, 8 Oct 93 19:35:43 MST Please subscribe me and a colleague to the ALS discussion list. 1. Sunkyo Kwon fu03c2dj@fub46.zedat.fu-berlin.de 2. Karl Mathias Neher fu03c2gj@fub46.zedat.fu-berlin.de Thank you very much Sunkyo Kwon *-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-* *Sunkyo Kwon FREE UNIVERSITY BERLIN, UKRV * * DEPT. OF GERONTOPSYCHIATRY * * RESEARCH UNIT PSYCHOLOGICAL GERONTOLOGY * * ULMENALLEE 32, 14050 BERLIN, GERMANY * * =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-* * e-mail: fu03c2dj@fub46.zedat.fu-berlin.de * * Til 12/93: e-mail: Kwon@Kli-Virchow.FU-BERLIN.D400.de * * Kwon@FUB02.ZEDAT.FU-BERLIN.de (Internet)* * Otherwise... FAX: Germany-30-3003-289 * * PHONE: Germany-30-3003-291 * *-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-* (3) ===== ALS-INTRO-MIKE WARD ========== Date : 07 Oct 93 15:03:50 EDT From : Charles M Ward <72567.400@CompuServe.COM> Subject: ALS-INTRO Mike Ward Bob, I am 48 years old and have had ALS for over 7 years. I have two grown children and my loving wife has stayed with me. I am a Physicist with Intel corporation in Aloha Oregon and specialize in failure analysis and building instruments for physical measurements. My hobbies used to be sailing, hiking and playing my banjo, fiddle and guitar. Now I read a lot, work and watch TV. I am a member of the Forest Grove Rotary club. I go to work four times a week and have been respirator dependent for a year. I am fed through a neck tube. On my chair I use a words+ system with scanning WSKE. At work I use an Eyegaze system. My insurance pays me a monthly fee so I can hire aides for 24 hour coverage. I, like everyone else, am concerned about what will happen when my insurance runs out. Well Bob i hope thats what you want. Thanks for maintaining this valuable network. I am happy to talk to anyone I can help. Mike Ward (4) ===== a report from Australia ========== Date : Fri, 08 Oct 1993 00:23:38 +1000 From : /R=ECC/R=AM/U=CSLIB_ASPIN/FFN=CSLIB_ASPIN/@mr.tased.edu.au Subject: Motor Neurone Disease Association of Tasmania Thank you for the information I have been receiving re the ALS Group. I have passed on the info to members of the local support association who are excited about having access to information so quickly. Re the list of addresses of ALS Associations, the address for the Tasmanian association has changed. (Please also note that the name has changed to Motor Neurone Disease Association of Tasmania Inc.) Address details are as follows: Secretary: Mrs R Stobart PO Box 10 HAGLEY Tasmania Australia 7292 Telephone: (003) 93 1203 I would be happy to pass on any e-mail correspondence to the group. (i.e. cslib_aspin@ecc.tased.edu.au) --------------------------------------------------------- Following is some information on the Motor Neurone Disease Association of Tasmania Inc. The association came into existence in January 1986 at a meeting attended by a small group of patients and their families, representatives of health and welfare groups and other concerned people. We meet on a regular basis of not less than four times a year. The secretary mails formal notice of meeting to members. Meetings are also advertised in the spress, a Newsletter is produced on a bi-monthly basis and is mailed to members, associated Societies, etc. The Newsletter includes the collection and distribution of information on M.N.D. and its treatment at all levels - from the neurological specialist to the friend of a patient who just wants to give a helping hand - including overseas sources and our own Australain Research Projects. The association participates in the promotion of research into M.N.D. yet its prime concern is the welfare of the patient. Expression of this concern is essential because on being diagnosed with what has been, until now, an "unpublicised" disease, many patients experience intense feelings of isolation and abandonment. This is particularly noticeable among country patients. Until such time as research has highlighted the cause of M.N.D. and has provided an effective treatment for the disease, the major task facing the Association will be to help the patients, their families and their friends by offering assistance and advice on how to cope with the complexities of living with the disease. Currently we have 22 motor neurone disease patients in the association but the total at this stage in Tasmania would be approximately 30. -------------------------------------------------------- Hope this information is of interest. Regards Jan Aspinall Education Library 71 Letitia St NORTH HOBART Tasmania Australia 7000 Telephone: 002 33 7186 Fax: 002 33 7862 (5) ===== a book report ========== APn 10/08 0733 FEA--Books-Black Holes and Baby Universes By LOWE BIBBY For Associated Press Special Features Stephen Hawking's latest book, "Black Holes and Baby Universes," is a slender volume of 13 essays that is nothing short of pure delight. I believe that Hawking, whose earlier work, "A Brief History of Time," sold over 5 million copies, wanted to accomplish two things in this book, and he has succeeded admirably in both. As most of us know, Hawking has been afflicted for many years with amyotrophic lateral scierosis (ALS), the debilitating condition also known as Lou Gehrig's disease. Thus his discussion of his youth and the onset of ALS gives us insights into how he has dealt with the disease and how successful his life has been despite it. Secondly, he also offers us an understanding of cosmology -- and, by inference, theology -- in terms perhaps more understandable than anything achieved by prior authors. Harlow Shapely, then Dean Emeritus of the Harvard Observatory, authored a wonderful book, "Of Stars and Men," that is the premier linkage between theoretical astronomy and theology. Although Hawking protests that he intends no such linkage, one cannot read his book without being driven to a contemplation of all that is basic in one's beliefs about the origins of the universe. Hawking, intentionally or not, propels the serious reader inescapably in this direction. In several of the essays, Hawking treats the possibility of God as related to the universal laws of physics, but not a consequence of those laws. Thus he always leaves room for an individual to choose God as the symphony director. In his essay on the origin of the universe, for example, he makes a cogent case for an expanding universe without boundaries, one that obeyed the basic laws of physics from the instant of its creation. However, he leaves it to the reader to answer the question of why the universe bothers to exist at all. In discussing the quantum mechanics of black holes, he raises the clear possibility that the universe's "big bang" origin was in fact a gigantic black hole explosion, coming after "an earlier phase of the universe in which matter collapsed, to be recreated in the big bang." Again, he leaves the theological implications of that staggering thought to his readers. "Black Holes and Baby Universes" (Bantam Books, $21.95) should be read in a quiet room with soft classical music as background. It is one that will raise the reader to a new level of comprehension and create the illusion that our universe can be understood by common folk. Hawking carries one back to those wonderful summer days of youth, when from the top of a country hill, you lay on your back and watched the stars roll overhead, sure that there was an order, but unsure of why or how. (6) ===== re: Cytotherapeutics ========== OTC 10/06 1618 Cytotherapeutics makes announcement PROVIDENCE, R.I., Oct. 6 /PRNewswire/ -- CytoTherapeutics, Inc. (NASDAQ: CTII) announced today that E. Edward Baetge, Ph.D., its director of Neuroscience at the company, reported the successful delivery of human nerve growth factor (NGF) across the blood/brain barrier from cell-containing capsules implanted in the brain in a primate model relevant to Alzheimer's disease. The results of the study demonstrate protection from growth-factor deprived loss of cholinergic neurons in a region of the brain linked to memory deficiencies associated with Alzheimer's disease. Baetge presented the study results at the Conference on Neurodegenerative Diseases: Advances in Therapeutic Development in Lake Buena Vista, Fla., sponsored by International Business Communications. "We have recently demonstrated in analogous rodent models that human NGF delivery from encapsulated xenogeneic (cross-species) cells prevents neuronal cell loss characteristic of neurodegenerative disorders. With our successful delivery of human NGF in a primate, we have moved closer to human clinical applicability with our encapsulation technology," said Baetge. "What is most important about these results is the potential of our CRIB(TM) technology to deliver multiple neurotransmitter and trophic factors directly into the central nervous system (CNS) without the use of immunosuppression and within a fully retrievable implant," he added. CytoTherapeutics also reported results from the company's ongoing primate efficacy studies of its NeuroCRIB(TM) implant for Parkinson's disease. In these studies, the company and its collaborators showed behavioral improvements in MPTP primate models of Parkinson's disease utilizing CytoTherapeutics'dopamine-secreting implant. In addition, a study of a rodent model of Huntington's disease utilizing the company's CRIB technology to deliver NGF showed behavioral and anatomical improvements, demonstrating human NGF-delivery in another xenogeneic transplant model. "These animal studies demonstrate that our proprietary encapsulation technology enables us to deliver a variety of neurotrophic factor- producing cells which may offer substantial improvement in the treatment of an increasing number of neurodegenerative diseases," said Seth A. Rudnick, M.D., chairman and chief executive officer at CytoTherapeutics. "The successful delivery in these animal studies of human-relevant neurotrophic agents within the brain, without immunosuppression, has strengthened all of our ongoing research and development of products for diseases of the CNS, including Parkinson's, Huntington's and Alzheimer's disease." CytoTherapeutics' encapsulated cell therapy has been used to deliver compounds such as enkephalins and catecholamines in its ongoing human clinical trial for chronic pain. These molecules are significantly smaller than neurotrophic factors. One of the technical advances underlying the achievements reported by scientists at CytoTherapeutics was the ability to design an implant capable of secreting stable therapeutic levels of protein molecules as large as or larger than NGF without loss of the immunoisolatory effect. The immunoisolatory effect is provided by the CRIB-based implants which are designed to enable nutrients and oxygen to pass through the wall of the implant to sustain the cells within the capsule, while shielding the cells from the host's immune system and allowing them to secrete relevant therapeutic agents. CytoTherapeutics is a leader in the development of implantable delivery systems for biologically active and gene therapy products for the treatment of central nervous system (CNS) diseases and other chronic disorders. The company's CNS products in development include its CereCRIB(TM) implant for the treatment of severe, chronic pain and its NeuroCRIB implant for the treatment of Parkinson's disease. The company is also developing applications of its CRIB technology for the potential treatment of Alzheimer's disease, amyotrophic lateral sclerosis and multiple sclerosis, ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ as well as other neurodegenerative diseases. 10/6/93 /CONTACT: Seth A. Rudnick, M.D., chief executive officer, 401-272-3310 ext. 2113 or Elizabeth Razee, communications coordinator, 401-272-3310 ext. 2132, both of CytoTherapeutics, Inc./ CO: CytoTherapeutics ST: Rhode Island IN: MTC SU: PDT == end of als 60 ==