=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#72, 10 December 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 == == 170+ 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 32316 USA == =============================================================== == Back issues are available via e-mail from: == == LISTSERV@mailer.fsu.edu == == send an e-mail message that says INDEX ALS == == Also available via anonymous FTP at mailer.fsu.edu == == directory ftp/pub/als == == Hardcopy versions (with extensive indexing) available == == from Grant Nicholas (gnicholas@pcgate.lanl.gov) == =============================================================== (1) ===== Managing ALS ========== MANAGING ALS CONFERENCE FOR HEALTH CARE PROFESSIONALS. The ALS Association announces its third conference on managing ALS for health care professionals: CURRENT CONCEPTS IN MANAGING ALS, August 4-7, 1994, Sheraton Society Hill, Philadelphia, PA. Cosponsored this year by Hahnemann University, the conference is for neurologists, family practitioners, pulmonologists, nurses, physical therapists, occupational therapists, nutritionists, respiratory therapists, and social workers. While it is not suitable for patients, family members, or volunteers, you can help the ALS Association by getting the word out to health care professionals -- your neurologist, therapists, nurses, etc. -- about this most important conference. You may want to copy this article and pass it on to them. For more information about the managing ALS Conference contact: Lynn Klein, VP-Patient Services The ALS Association 21021 Ventura Blvd. #321 Woodland Hill, CA 91364 TEL: 818-340-7500 FAX: 818-340-2060 E-M: JGWX83A@prodigy.com (2) ===== alternative medicine databases ========== Date : Tue, 30 Nov 1993 10:00:25 EST Sender : Medical Libraries Discussion List : >From : AD83000 Subject: alternative medicine databases --------------------------------------------------------------- To all of you patient people who requested that I pass on the information on alternative medicine databases that I received on the MEDLIB discussion list, please excuse me for having taken so long to get back to you. I have received close to 30 messages from some very helpful individuals. After consolidating all the data, it turns out that there are three main sources of information on alternative medicine: 1) ALTERNATIVE MEDICINE (AMED) This is a database searchable on DATASTAR that deals with acupuncture; holistic healing; midwifery; homeopathy; allopathy; yoga; ayurvedic and Chinese medicine; herbal, light, water, heat and diet therapy. It lists articles from approximately 350 journal titles, as well as newspaper articles and books, from 1985 to the present. The database is updated monthly and contains some 50,000 records. DATASTAR can be reached at any of the following numbers: 1-800-221-7754 1-215-687-6777 1-415-988-9550 There is a printed version of this database, on which there seems to be little agreement as to the authoritative title. Some of the INTERNET messages refer to it as Alternative Therapy Index, others as Alternative Medicine Index, and a third group calls it Complementary Medicine Index. In any case, it is produced by the Medical Information Service, British Library, Boston Spa, West Yorkshire, ENGLAND, LS23 7BQ. The annual subscription is 75 pounds. You can reach them at 44937 546039 (tel) or 44937 546236 (fax). 2) CHIROLARS is a database available on BRS which deals with chiropractic medicine, physical therapy, acupuncture and biofeedback. The printed version is called Index to Chiropractic Literature. 3) There is an INTERNET discussion list called HOLISTIC which seems interesting. To subscribe, enter listserv@siucvmb.bitnet after the "to" prompt. Leave the "subject" prompt blank. Enter the following as your message : subscribe holistic followed by your name. To send messages to the discussion list, enter holistic@siucvmb.bitnet. Finally, the following is supposedly a good article on searching the alternative medicine literature (haven't seen it yet myself): Van Camp, AJ. Online sources for alternative medicine information. Database 16(5) Oct 1993: 100-3. Hope this is of some help to you. Gary Kober Montreal General Hospital Medical Library 1650 Cedar Ave., Room E6-157 Montreal, Quebec CANADA H3G 1A4 ad83@musica.mcgill.ca (3) ===== CFC INFO FOR RESEARCHERS ========== X-Mailer: America Online Mailer Sender : "fredp57033" Date : Thu, 09 Dec 93 17:25:01 EST Subject : CFC INFO FOR RESEARCHERS CHLOROFLUOROCARBON (CFC) INHALATION THERAPY IT HAS BEEN RECOGNIZED FOR SOME YEARS THAT VICTIMS OF A NUMBER OF DISEASES, INCLUDING ALZHEIMERS, PARKINSON'S, LOU GEHRIG'S AND SOME FORMS OF CANCER, HAVE ELEVATED FREE RADICAL LEVELS. IT IS BELIEVED BUT NOT PROVEN THAT THE REDUCTION OR ELIMINATION OF THE FREE RADICALS WILL RETARD OR POSSIBLY STOP THE PROGRESS OF THE DISEASE. THE PROPOSED PROCESS UTILIZES CHLOROFLUOROCARBONS [CFC] AS THE THERAPEUTIC AGENT. THE CFC GAS WILL BE INHALED BY THE PATIENT AND THE UNASSIMILATED CFC'S WILL BE RECOVERED IN AN ENVIRONMENTALLY SAFE MANNER. IT IS ANTICIPATED, BUT NOT CONFIRMED, THAT THE CFC'S WILL SCAVENGE THE FREE RADICALS. THIS NEW TREATMENT WILL NEED TO BE EVALUATED ALSO AS A COTHERAPY IN CONJUNCTION WITH OTHER THERAPEUTIC AGENTS. IT IS THE SAME PROPERTIES OF CFC THAT DEPLETE THE OZONE LAYER THAT MAY REDUCE FREE RADICAL LEVELS FOUND IN PATIENTS WITH A NUMBER OF DISORDERS. CONSULTING WITH ME HAVE BEEN A PULMONARY CARE PHYSICIAN, A NEUROLOGIST, A PHARMACIST, A ZOOLOGIST/BIOLOGIST AND AN INDUSTRIAL CHEMIST. ALL OF THESE DISCIPLINES BELIEVE THAT IT COULD WORK AND THAT THE UNDERLYING CHEMISTRY IS SOUND. AT THIS TIME WE ARE SEEKING THE COOPERATION OF PARTIES INTERESTED IN PARTICIPATING IN THE RESEARCH TO SEE IF IT WILL BE EFFECTIVE. CFC'S HAVE BEEN FOUND SAFE AT ALMOST ANY LEVEL PROVIDING THAT REQUIRED OXYGEN LEVELS ARE MAINTAINED. CFC'S HAVE BEEN USED FOR MANY YEARS AS THE PROPELLANT IN INHALERS USED IN THE TREATMENT OF RESPIRATORY DISORDERS: THUS ITS SAFETY HAS BEEN ESTABLISHED. DUPONT HAS ADVISED THAT ALL TOXICOLOGY AND CLINICAL DATA FOR THE CFC'S HAS BEEN PUBLISHED AND ARE AVAILABLE IN THE PUBLIC DOMAIN. THESE PUBLICATIONS CAN BE OBTAINED THROUGH VARIOUS SOURCES, FOR EXAMPLE, THE NATIONAL LIBRARY OF MEDICINE (NLM). SHOULD EFFICACY BE PROVEN, THE INHALATION TREATMENT WOULD BE MADE AVAILABLE, ON A PRESCRIPTION BASIS, BY LICENSED PROVIDERS. FOR ADDITIONAL INFORMATION PLEASE CONTACT: FREDERICK J. POOL 9 SOMMERSET LANE LINCOLNSHIRE, IL 60069 PHONE (708) 948-5623 E-mail: fredp57033@aol.com RESEARCH GRANTS AVAILABLE LIST OF ORGANIZATIONS THAT HAVE REVIEWED THE CONCEPT OF USING CHLOROFLUOROCARBONS (CFC'S) INHALATION TREATMENT AS AN ANTIOXIDANT THERAPY AND WILL CONSIDER GRANT PROPOSALS FROM QUALIFIED RESEARCHERS AMERICAN HEALTH ASSISTANCE FOUNDATION 15825 SHADY GROVE ROAD - SUITE 140 ROCKVILLE, MD 20850 PHONE: (301) 948-3244 AREA OF INTEREST: ALZHEIMER'S DISEASE REQUEST RESEARCH GRANT PROPOSALS APPLICATION PACKET FROM SHERRY A. MARTS, Ph.D , RESEARCH GRANTS MANAGER MUSCULAR DYSTROPHY ASSOCIATION 3300 EAST SUNRISE DRIVE TUCSON, AZ 85718 PHONE: (602) 529 2000 AREA OF INTEREST: AMYOTROPHIC LATERAL SCLEROSIS (ALS) REQUEST RESEARCH GRANT PROPOSAL APPLICATION MATERIAL FROM NORINE STIRPE, Ph.D, DIRECTOR OF RESEARCH DEVELOPMENT ALZHEIMER'S ASSOCIATION MEDICAL AND SCIENTIFIC AFFAIRS 919 NORTH MICHIGAN AVENUE CHICAGO, IL 60611-1676 PHONE: (312) 335-8700 AREA OF INTEREST: ALZHEIMER'S DISEASE REQUEST RESEARCH GRANT PROPOSAL APPLICATION MATERIAL FROM CATHERINE ZDUNCZYK, GRANTS COORDINATOR NATIONAL PARKINSON FOUNDATION, INC 1501 N.W. 9TH AVENUE, BOB HOPE ROAD MIAMI, FL 33136-1494 PHONE: (305) 547-6666 AREA OF INTEREST: PARKINSON DISEASE (THEY SUGGESTED ANIMAL RESEARCH TRIALS) REQUEST RESEARCH GRANT PROPOSAL APPLICATION MATERIAL FROM: MS. PAULA CONLEY, MANAGER GRANT APPLICATIONS & PROCEDURES PARKINSON'S DISEASE FOUNDATION WILLIAM BLACK MEDICAL RESEARCH BUILDING COLUMBIA-PRESBYTERIAN MEDICAL CENTER 650-710 WEST 168TH STREEY NEW YORK, NY 10032 PHONE: (212) 923-4700 A PROPOSAL TO THE PDF SHOULD, IN NO MORE THAN TWO OR THREE PAGES, EXPLAIN WHAT IS TO BE DONE AND HOW. THE APPLICATION SHOULD INCLUDE THE C.V. OF THE PRINCIPAL INVESTIGATORS AND A BUDGET. EXTRA MURAL GRANTS FROM THE PDF ARE FOR $25,000. THEY HAVE SUGGESTED ANIMAL STUDIES. SEND TO DINAH TOTTENHAM ORR, EXECUTIVE DIRECTOR. NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE DR. CONSTANCE ATWELL, DIRECTOR OF EXTRA MURAL ACTIVITIES FEDERAL BUILDING, ROOM 1016 BETHESDA, MD 20892 PHONE: (301) 496-9248 NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS & STROKE DR. CARL LEVENTHAL, DIRECTOR DIVISION OF DEMYELATING, ATROPHIC AND DEMENTING DISORDERS FEDERAL BUILDING - ROOM 810 BETHESDA, MD 20892 PHONE: (301) 496-5679 AREAS OF INTEREST: ALZHEIMER'S, PARKINSON'S AND AMYOTROPHIC LATERAL SCLEROSIS (ALS OR LOU GEHRIG'S DISEASE) SEND APPLICATION REQUEST TO DR. ATWELL AND CALL DR. LEVENTHAL, WHOSE DIVISION COVERS ALL OF THE DISEASES IN THE STUDY, FOR ASSISTANCE IN THE GRANT APPLICATION PROCESS; YOU WILL FIND BOTH ARE HELPFUL AND COOPERATIVE. THE AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION 21021 VENTURA BLVD. - SUITE 321 WOODLAND HILLS, CA 91364 PHONE: (818) 340-7500 AREA OF INTEREST: AMYOTROPHIC LATERAL SCLEROSIS (LOU GEHRIG'S DISEASE) SEND ABSTRACTS ONLY TO THE ATTENTION OF MICHAEL W. HAVLICEK, EXECUTIVE VICE PRESIDENT THE INHALATION OF CHLOROFLUOROCARBON (CFC) AS AN ANTIOXIDANT THERAPY WAS CONCEIVED BY FREDERICK J. POOL. THE CONCEPT WAS SUBMITTED TO A NUMBER OF POTENTIAL RESEARCH FUNDING ORGANIZATIONS FOR THEIR CONSIDERATION AS A PROJECT WORTHY OF RESEARCH GRANTS. THE ABOVE LISTED ORGANIZATIONS HAVE AGREED TO CONSIDER GRANT PROPOSALS FROM QUALIFIED RESEARCHERS TO INVESTIGATE ITS EFFICACY. MR. POOL, WHO IS NOT A QUALIFIED RESEARCHER. HAS ACCUMULATED ADDITIONAL INFORMATION AND DATA THAT WILL BE HELPFUL TO RESEARCHERS WHO WILL BE APPLYING FOR GRANTS. TO OBTAIN A COPY CONTACT: FREDERICK J. POOL 9 SOMMERSET LANE LINCOLNSHIRE, IL 60069 PHONE; (708) 948-5623 E-mail: fredp57033@aol.com (4) ===== of possible interest #1 ========== ------------------------------------------------------------------- Date : Tue, 7 Dec 1993 17:57:58 +0100 Sender : Oxygen Free Radical Biology and Medicine Discussion Group : From : Mauro Fasano Subject: organ and tissue bank ------------------------------------------------------------------- hello everyone! I am looking for mesencephali from patients affected by Parkinson's Disease to investigate oxidative processes involving that brain area. I have heard about the existence of organ and tissue banks in the USA. Is this correct? Does anyone give me informations about? Thanks a lot!!!! Mauro Fasano Dept. Inorganic Chemistry I-10125 TORINO Italy ====> FAX +39-11-6690957 ====> E-mail fasano@silver.ch.unito.it or through the discussion list (5) ===== of possible interest #2 ========== ------------------------------------------------------------------ Date : Wed, 8 Dec 1993 08:01:51 CST Sender : NEW-LIST - New List Announcements >From : samajane@MIT.EDU Subject: NEW: BRAINTMR - Brain Tumor List ------------------------------------------------------------------ BRAINTMR on LISTSERV@MITVMA.MIT.EDU The BRAINTMR list is a forum to discuss topics related to all types of brain tumors whether benign or malignant. Hopefully information and experiences will be shared among brain tumor patients, their families & supporters, all kinds of concerned medical professionals**, medical educators, and researchers who study brain tumor growth or treatment. BRAINTMR is open to all and is moderated by the listowner, not edited. (**here's hoping for: neurosurgeons, nurses, social workers, primary care physicians, pathologists, oncologists, etc.) Here are just a few examples of how BRAINTMR could be used: > For patients and families dealing with the same tumor type to "meet" > To find out WHO is doing WHAT brain tumor research > To address emotional aspects of patients' brain tumor treatment > To discuss the impact of brain tumors on individuals, society and the practice of medicine > To discuss other intracranial malformations (such as the AVM) BRAINTMR will be as interesting and helpful as its participants. I hope many will generously offer their expertise and experiences to provide information and support. You may subscribe to the list by sending a message to: LISTSERV@MITVMA.MIT.EDU The text (body) of the message should read: SUBSCRIBE BRAINTMR Yourfirstname Yourlastname Eg. sub briantmr Jane Doe You should receive confirmation of your new subscription almost immediately. If you have questions please do not hesitate to contact the owner directly. Owner: Samantha Scolamiero samajane@athena.mit.edu Listowner & Brain Tumor Survivor (cpa/brainstem epidermoid) 182 Redington Street Swampscott, MA 01907-2135 USA Home Phone: 617/593-5095 ---------------------------------------------------------------------- == end of als 72 ==