=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#39, 02 MAY 1993) == == == == To subscribe, to unsubscribe, to request back issues, == == 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 == == == == The month of May has been designated by the US Congress == == as: /// NATIONAL ALS AWARENESS MONTH /// == =============================================================== (1) ===== Useful Resources ========== (a) ----- The Spring 1993 issue of "I.V.U.N. News" (International Ventilator Users Network) contains articles relating to home mechanical ventilation and ALS. This useful periodical is available from: Gazette International Networking Institute; 5100 Oakland Avenue, Suite 206; St. Louis, MO 63110-1406 USA. Tel. 314-534-0475, FAX 314-534-5070, E-mail ???? Here are a couple of reprints from the newsletter: Books,Manuals, Etc. -------------- LIVING WITH A VENTILATOR by Thomas Klaus, MD, and Dan Dubowski, RRT, Bantam paperback copyright 1993 (just published), $5.95. Dr. Klaus is Medical Director of Lake Erie Rehabilitation Center in Erie, Pennsylvania, where Dubowski is a respiratory therapist and President of the National Association of Ventilator-Dependent Individuals (NAVDI). Videos. -------------------------- CARING FOR THE CAREGIVER, explores ways caregivers can take better care of themselves, reduce stress, make life easier and more enjoy- able, and find help when it is needed. Produced, directed, and edited by Ismail Tsieprati, a filmmaker who has ALS, and his wife and primary caregiver, Cheryl. Cost of the vedio is available to IVUN NEWS readers for a special price of $14.95 postpaid. Send check or money order to Valona Productions; 14621 Titus Street, Suite 108; Van Nuys CA 91402. TEL 818-785-9982. (b) ----- The Spring 1993 issue of ORPHAN DISEASE UPDATE has as its feature article, "The Orphan Drug Act: A Decade of Progress". Available from: National Organization for Rare Disorders (NORD); P.O. Box 8923; New Fairfield, CT 06812. TEL 203-746-6518. Though this particular issue did not have news about ALS, the following article was useful in that it would be interesting to know if such a program exists for ALS-related drugs. Like for instance such "promising" drugs as CNTF, Myotrophin, etc. from Regeneron, Synergen, Cephalon, etc. ???? == "RESEARCH UNDERWAY/Multiple Sclerosis." ==================== A two-year clinical trial of the orphan drug copolymer (COP-1), a synthetic polypeptide developed in Israel, indicated that people with relapsing-remitting Multiple Sclerosis had fewer attacks than the placebo group. A wider trial is underway, but people with Multiple Sclerosis who are not in the clinical trial are able to get COP-1 under a "Treatment IND" through Gates Pharmaceuticals, P.O. Box 904, Sellersville, PA 18960. The FDA allows manufacturers to distribute promising experimental drugs under a "Treatment IND" to a large number of people before the drug is approved for marketing. =============================================================== (2) ===== a question re SOD/BTGC ========== Here is an interesting article ... ----- Citation : Marketletter, March 15, 1993 Publisher : Marketletter (Publications) Ltd. Subscription: 440 British Pound Sterling per year, published weekly Address : Marketletter Publications, Ltd; 54/55 Wilton Road; : London SW1V 1DE UNITED KINGDOM : TEL (71) 828-7272 FAX (71) 828-0415 ----- Title : BIO-TECHNOLOGY TRIAL ----- Bio-Technology General Corp (BTGC) has started a clinical study using intratracheal delivery of the recombinant superoxide dismutase (SOD) to assess its therapeutic utility in the prevention of bronchopulmonary dysplasia in premature babies, following the go-ahead from the US Food and Drug Administration on February 24. /// Does anyone know how this information relates to the ALS-SOD /// discovery/research? == end of als 39 ==