=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#99, 06 May 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 == == 240+ 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) .. re: Workshop in Philadelphia (2) .. Request for info re genetic testing for FALS gene... (3) .. voice synthesizer (4) .. of possible interest (5) .. school nurse list (6) .. support group / chromosome deletion (7) .. Symposium on Computer Application in Medical Care (8) .. ALS / autoimmune (yes ??) (9) .. ALS / autoimmune (no ??) (1) ===== re: Workshop in Philadelphia ========== Date : Fri, 29 Apr 1994 20:18:50 EST >From : springerj@hal.hahnemann.edu Subject: re: Workshop in Philadelphia This note is for all, but I am wanting to contact Mike Doliton who recently sent me an e-mail note. Michael, I was glad that you were able to attend the Workshop in Philadelphia earlier this month. I have read your e-mail comments on numerous occasions, and want to communicate in more detail my comments at the workshop. What we know from my own research, and that of others, is the following: certain growth factors appear to be effective in reducing motoneuron cell death in animals, and that glutamate antagonists are also effective in some instances. While you and I did not get together after the workshop, it was my impression that you have bulbar onset ALS, which may respond to the Riluzole treatment. My thought is to initiate clinical trials using both growth factor treatment (specifically BDNF) and Riluzole or some other glutamate antagonist. Amgen and Regeneron are conducting the initial clinical trials with BDNF, and should this growth factor prove safe, I would push for combined BDNF/Riluzole trials. The goal would be to get both Amgen/Regeneron (using BDNF) and Rhone-Poulenc (Riluzole) to work together on this. Theoretically, the BDNF would provide support for the motoneurons, while Riluzole would decrease the toxic effects of too much glutamate. Another issue is the lack of studies investigating the motoneurons found in the cortex of the brain. Most studies have focused on spinal cord motoneurons. We need more studies aimed at identifying why these motoneurons degenerate, and what procedures can be developed to halt this degeneration process. My lab is currently determining if these upper motoneurons that are found in the cortex exhibit the ability to respond to certain growth factors. Finally, we have discovered that a newly discovered protein is overexpressed in motoneurons that die in ALS. We think that this overexpression may be related either to the neurons attempt to regenerate (a positive effect), or may actually play a role in the death of the motoneuron. We are requesting samples of cerebral spinal fluid from early onset ALS patients to test whether this protein can be detected in early phases of the disease. This would be an important step in early diagnosis. I hope that this information is helpful and welcome any feedback. Till later, Joe. (2) ===== Request for info re genetic testing for FALS gene... ========== Date : 25 Apr 1994 09:13:44 -0400 >From : Tracy J. Brown o/o Subject: Request for info re. genetic testing for FALS gene... Does anyone know of any laboratories in the northeast (Boston area) which would be able to perform genetic testing for the gene mutations implicated in the familial form of ALS? Thanks, Tracy J. Brown (3) ===== voice synthesizer ========== Date : Wed, 04 May 1994 15:15:59 -0500 (EST) >From : JSRT_GO@PAVO.CONCORDIA.CA Subject: voice synthesizer My husband, Bill, is considering buying a voice synthesizer. We wondered if anyone who has had experience buying one might be able to give us a few hints on what to look for. Bill is able to do a little typing at the moment. We live in the Montreal area and we have received an estimate of 5,000 - 6,000$ for a computer system which comes with a printer. We are new subscribers to the Digest. We would like to thank everyone for all the great information that has come our way. Thank you. Jean Gordon. (4) ===== of possible interest ========== Date : Wed, 4 May 1994 21:55:19 +0400 Sender : Medical Libraries Discussion List >From : "Mikhail I. Kroutikhine" Organization: Private Person Mikhail Krutikhin Subject: Russians found an efficient cure for some cerebral deseases For Your Information ==================== PRIMAVERA MEDICA Center of Modern Medicine began treating patients with the following deseases: 1. Infantile cerebral paralysis 2. Infantile encephalopathies 3. Diffused sclerosis 4. Cerebral traumas (within three weeks) 5. Polyneuropathy 6. Alzheimer's desease 7. Parkinson's desease 8. Stroke consequences 9. Oligophrenia Treatment with specific combinations of aminoacids demonstrates noticeable effect in most cases, including reduction of muscle tonus, vanishing of tremor, restoration of locomotive functions. E.g., symptoms of infantile cerebral paralysis disappear after the first round of treatment by 30-80%. Full theurapeutic effect is achieved in 89% of Parkinson's victims. Address: PRIMAVERA MEDICA Center 31, B.Serpukhovskaya, Kor.13, Moscow, Russia Tel.: (+7 095) 235 8158 & 237 9449 (5) ===== school nurse list ========== Date : Tue, 19 Apr 1994 16:43:09 CDT Sender : NEW-LIST - New List Announcements >From : Martha Bergren Subject: NEW,CHANGE: SCHLRN-L - School Nurse List - CORRECTED COPY --------------------------------------------------------------------- Editor's Note: Due to some incorrect information the previous announce- ment of SCHRN-L should be DISCARDED. The name of the list in that announcement was incorrect. This message replaces that one. We apologize for the confusion and extra message. mgh "To err is human. With a computer we can really screw up!" ;-) SCHLRN-L on LISTSERV@UBVM.CC.BUFFALO.EDU School Nurse List or LISTSERV@UBVM.BITNET SCHLRN-L is a discussion group organized for school nurses, school nurse practitioners, school nurse teachers, and school nurse managers. The purpose of the list is to: 1. Promote networking among school nurse professionals. 2. Assist in the dissemination of research and technological advancements that would enhance the delivery of care to the student population. 3. Provide a forum for the discussion of legislation, policy, and regulatory issues which affect school nurse practice. 4. Support school nurses working in isolated educational settings with resources and information. 5. Disseminate information about continuing education opprtunities, grants, advanced practice, and professional organizations. To subscribe send a message to LISTSERV@UBVM.CC.BUFFALO.EDU or LISTSERV@UBVM on BITNET and in the body of the message type: SUBSCRIBE SCHLRN-L yourfirstname yourlastname e.g.: SUBSCRIBE SCHLRN-L Jane Doe Archives of SCHLRN-L are stored in SCHLRN-L FILELIST. To receive a list of the files send the following command to listserv@ubvm.cc.buffalo.edu INDEX SCHLRN-L Address postings to the list: SCHLRN-L@ubvm.cc.buffalo.edu Owner: Martha Dewey Bergren c179gu7r@ubvm.cc.buffalo.edu (6) ===== support group / chromosome deletion ========== Date : Wed, 27 Apr 1994 10:13:39 EDT Sender : Human Motor Skill Development List >From : Mike Drum Subject: Support Group Announcement I am pleased to announce the incorporation of Chromosome Deletion Outreach. We are a non-profit support group. We started out with seven mothers sharing one thing in common, children with abnormal deletions, translocations or other rare abnormalities. Our daughter Beckie is three-and-a-half years old and is developmentally delayed, hypotonic and has myoclonic jerking. Our group has since gained a membership of more than 450 members. Our goals are support, guidance, and research in helping to deal with our "very special children." For more information write me at: Chromosome Deletion Outreach c/o Cheryl Drum 6100 Cairo Road Westerville, OH 43081 or send e-mail through my husband at: mike@tekelec.com Thank you, Cheryl Drum (7) ===== Symposium on Computer Application in Medical Care ========== Date : Tue, 12 Apr 1994 16:46:44 GMT Sender : Hospital Computer Network Discussion Group and Data Base : >From : "Samuel R. Kaplan" Subject: Symposium on Computer Application in Medical Care (SCAMC) ----------------------------------------------------------------- CALL FOR PARTICIPATION The Eighteenth Annual SYMPOSIUM ON COMPUTER APPLICATIONS IN MEDICAL CARE A Conference of the American Medical Informatics Association November 5, 1994 Sheraton Washington Hotel, Washington, D.C. Transforming Information. Changing Health Care The American Medical Informatics Association (AMIA) solicits participation at its annual meeting, the Symposium on Computer Applications in Medical Care (SCAMC). SCAMC is the premier conference in medical informatics in the United States. It provides a forum where those interested in medical informatics can present research findings, discuss development efforts, demonstrate software, attend tutorials, and hear leading experts from a wide range of professional groups discuss the current development and future impact of biomedical information systems. The key deadline for submission of papers and proposals is May 10, 1994. A copy of the call for participation, submittal forms, and other information may be obtained from: American Medical Informatics Association 4915 St. Elmo Avenue, Suite 302 Bethesda, Maryland 20814 Phone: 301-657-1291 E-mail: amia@camis.stanford.edu -- ************************************************************************* Sam Kaplan 804 982 5819 University of Virginia 804 982 5524 FAX Center for Public Service kaplan@virginia.edu (8) ===== ALS / autoimmune (yes ??) ========== ================================================ Title : Amyotrophic lateral sclerosis patient antibodies label : Ca2+ channel alpha 1 subunit Author : Kimura F; Smith RG; Delbono O; Nyormoi O; Schneider T; : Nastainczyk W;Hofmann F; Stefani E; Appel SH Source : Annals of Neurology 1994 Feb;35(2):164-71 Abstract : Sporadic amyotrophic lateral sclerosis is an idiopathic human degenerative disease of spinal cord and brain motor neurons. Prior studies demonstrated that most patients with amyotrophic lateral sclerosis possess immunoglobulins that bind to purified L-type voltage-gated calcium channels, that titers of anti-voltage-gated calcium channel antibodies correlate with disease progression rates, and that amyotrophic lateral sclerosis patient-derived antibodies (ALS IgG) produce electrophysiological changes in the function of voltage-gated calcium channels. Using Western transfer immunoblots and enzyme-linked immunosorbent assays, the calcium ionophore-forming alpha 1 subunit of the voltage-gated calcium channel is now identified as the major voltage-gated calcium channel antigen to which ALS IgG binds. Additionally, the binding of an L-type voltage-gated calcium channel alpha 1 subunit-directed monoclonal antibody, which itself mimics the effects of ALS IgG on skeletal muscle voltage-gated calcium channel currents, is selectively prevented by preaddition of ALS IgG. Voltage-gated calcium channel-binding IgG from patients with Lambert- Eaton myasthenic syndrome appears to be differentiated from ALS IgG by the reactivity of the former to both alpha 1 and beta subunits of the calcium channel. These assays provide further evidence linking amyotrophic lateral sclerosis to an autoimmune process, and suggest one means to differentiate immunoglobulins from patients with amyotrophic lateral sclerosis from those of patients with another autoimmune disease expressing calcium channel antibodies. (9) ===== ALS / autoimmune (no ??) ========== ================================================ Title : Trial of immunosuppression in amyotrophic lateral : sclerosis using total lymphoid irradiation Author : Drachman DB; Chaudhry V; Cornblath D; Kuncl RW; : Pestronk A; Clawson L; Mellits ED; Quaskey S; : Quinn T; Calkins A; et al Source : Annals of Neurology 1994 Feb;35(2):142-50 Abstract : Although the cause of amyotrophic lateral sclerosis (ALS) remains unknown, recent studies have suggested an autoimmune mechanism of pathogenesis. Previous trials of immunosuppressive treatment have yielded inconclusive results. Our study was designed to determine whether more powerful and prolonged immunosuppression, produced by total lymphoid irradiation (TLI), would alter the course of ALS. In a double-blind, randomized, placebo- controlled study, 30 patients with classic ALS were treated with TLI, and 31 were given sham radiation. Quantitative measurements of muscle strength, functional motor activity, and humoral and cellular immune status were followed for 2 years, or until death or respirator dependence. Motor function in the TLI-treated and control groups showed no significant differences throughout the study. Overall survival was not significantly different in the TLI-treated and control groups. TLI effectively suppressed cellular and humoral immune function throughout the 2-year study period. Analysis of the relationship between immunosuppression and motor functions showed no consistent effect of treatment. We conclude that powerful and prolonged immunosuppression produced by TLI did not benefit patients with ALS. This fails to support the concept of an autoimmune mechanism of pathogenesis of ALS. == end of als 99 ==