=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#73, 16 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 == == 180+ 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 (not a peer reviewed journal, and not edited == == by an MD) 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) ===== patient's results on IGF-1 ========== Date : Wed, 15 Dec 93 10:23:54 EST >From : "Mike Doliton" Subject: patient's results on IGF-1 I would like to know from patients on this BBS if anyone has had positive results from taking IGF-1 in a drug study. Please also share with me any side effects you may have had. I am contemplating joing a study in Philadelphia. I am presently on CNTF and have had no feeling of stopping the progression. I also have had caughing which is hard to live with as a side effect so I don't think I am on the plasibo. Regards, Mike Doliton Bulbar onset patient (2) ===== re: duplicate messages from als@huey ========== a -------- >CompuServe Mail >Date : 15-Dec-93 22:16 EST >>From: MARTIN I. WEINBERGER [72724,324] > : 72724.324@compuserve.com >Subj : MAIL DUPLICATION >Please be good enough to check - I seem to be getting 2 of >everything. Thanks for sending the interest group digests. >I'm working myself up to submitting some material one of >these days. Best regards and happy holidays. >b -------- >Date : Wed, 15 Dec 93 11:16:33 CST >>From : optimg!philw@uunet.UU.NET (Phil Walsh) >Subject: Mail alias >Bob --fyi-- >Most (all?) of the time when I receive mail from the als list, >I receive 2 copies of it. Have I somehow been entered in the >alias file twice? Or is something else broke? >Thanks-- --philw Phil Walsh philw@optimage.com It is a software problem on huey. Hope to have the problem cleared at the first of the new year (I think). Until then, please keep the faith. rgds,bro (3) ===== books about food ========== MANAGING SWALLOWING PROBLEMS ------------------------------ (MALS Manual IV, Managing Amyotrophic Lateral Sclerosis) By William Preston, Jane Lyons & David Goldblatt 1987, $ , 80 pages, paperback. Available from: ALS Association; 21021 Ventura Blvd., #321; Woodland Hills, California 91364. TEL: 818-340-7500. MeALS FOR EASY SWALLOWING --------------------------------- A collection of Recipes for easy swallowing to enhance the joys and pleasures of eating. By Vicki Appel date?, $5.00, 125 pages, paperback. Available from: The ALS Clinic; Department of Neurology; The Neurosensory Center; 6501 Fannin; Houston, Texas 77030. NON-CHEW COOKBOOK ----------------------------------------- By J. Randy Wilson 1986, $14.95, 200 pages, paperback, Canadian Hospital Association Available from: Wilson Publishing, Inc.; P.O. Box 2190; Glenwood Springs, Colorado 81602. TEL 303-945-5600. FOOD PROCESSOR COOKERY ------------------------------------ Step-by-Step Guide to Success. Over 200 Easy Recipes. By Margaret Deeds Murphy 1978, $9.95, 160 pages, hardback, Dorison House Publishers, Inc. Available from: HamiltonBeach/Proctor-Silex, Inc. ; Washington, North Carolina 27889. (4) ===== request for interviews ========== THE WILKERSON GROUP, INC. is a medical research and consulting firm in New York and London. We work primarily for pharmaceutical, device, and diagnostic companies on a variety of projects. We are currently working for a client who has a product in development for ALS and we are recruiting patients and caregivers to interview for this project. We are interested in talking about topics including the current treatment plan, reimbursement issues, where patients and families get new information about ALS and treatments, how care changes as ALS progresses, and what is wanted most in new treatments. The interview should take about 45 minutes. They will take place over the phone and can be scheduled at the interviewees convenience. We would like to thank the participants with either a book on a pertinent topic or a donation to the ALS Association or other appropriate group. Interested participants can call the Wilkerson Group at 800-654-8667 and ask for either Shade Cronan or Jeb Webber. THE WILKERSON GROUP, INC. 666 Third Avenue New York NY 10017-4011 USA TEL 212-557-1717 FAX 212-972-1056 TLX 517629 E-M none (5) ===== an alliance ========== OTC 12/02 1405 CytoTherapeutics and Membrana join forces to ... PROVIDENCE, R.I., and WUPPERTAL, Germany, Dec. 2 /PRNewswire/ -- CytoTherapeutics, Inc. (NASDAQ: CTII) and Akzo Faser AG, Business Unit Membrana (Membrana), the world's largest manufacturer of membranes for biomedical applications, announced today that they have signed an exclusive alliance directed at the development and manufacture of membranes for cell-containing devices that can be implanted into the body to treat diseases of the central nervous system (CNS) and other chronic disorders. Through this alliance, CytoTherapeutics will gain from Membrana sole access to all its existing, as well as novel, membranes for cell and gene therapy to be used in ongoing clinical development and worldwide commercialization efforts. CytoTherapeutics and Membrana will share the cost of jointly developing new membranes, which will be manufactured by Membrana and provided exclusively to CytoTherapeutics for use in the fields of encapsulated cell and gene therapy. CytoTherapeutics will also maintain its own membrane development and manufacturing programs. "This alliance integrates CytoTherapeutics' interdisciplinary programs in biomaterials, cell biology and implantation with Membrana's expertise in the design and manufacture of technical and biomedical membranes with broad-reaching applications," commented Thomas G. Wiggans, president and chief operating officer of CytoTherapeutics. "The agreement will further enhance our long- term development and manufacturing capabilities for proprietary applications of membrane technology for cell and gene therapy." Dr. Gunter H. Vitzthum, director and general manager of Membrana said, "By forging an exclusive relationship with CytoTherapeutics, we will be able to apply our more than 30 years experience in technical and biomedical membrane development and manufacturing to the unique and growing field of cell and gene therapy." CytoTherapeutics is developing cell-containing implants that are designed to secrete stable, therapeutic levels of specific proteins which may be effective for a variety of chronic disorders. The implant membranes are designed to enable nutrients and oxygen to pass through and sustain the cells within the implant and permit the encapsulated cells to secrete relevant therapeutic agents. The membranes protect the encapsulated cells from the host's immune response. The company currently has one product, its CereCRIB(TM) implant for chronic pain, in human clinical trials in Switzerland. Akzo Faser AG, Business Unit Membrana, located in Wuppertal, Germany, is a part of AKZO (NASDAQ: AKZOY), a diversified Dutch multi-national corporation with annual sales of approximately $10 billion. Membrana is a pioneer in the application and development of membrane technology for medical therapies, and is the world's largest producer of medical-grade membranes. 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 implant for the treatment of severe, chronic pain and its NeuroCRIB(TM) implant for the treatment of Parkinson's disease. The company is also developing applications of its CRIB(TM) technology for the potential treatment of Alzheimer's disease and amyotrophic lateral sclerosis (ALS), as well as other neurodegenerative diseases. CONTACT: Michael J. Lysaght, Ph.D., vice president of CytoTherapeutics, TEL 401-272-3310, ext. 2121; Gunter H. Vitzthum, Ph.D., director and general manager of Akzo Faser AG, Business Unit Membrana, TEL 011-49-202-6099-232 == end of als 73 ==