Date: Wed, 2 Nov 94 16:56:37 EST From: Bob Broedel To: Stuart.Neilson@brunel.ac.uk Subject: Re: ALS Interest Group List =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#126, 20 September 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 == == 330+ 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 .. BDNF 2 .. News for ALS Digest 3 .. Dr. Huggins Dental Clinic in Col Springs???? 4 .. Neurontin 5 .. "Travel firms begin catering to disabled" 6 .. INTERNATIONAL PHARMACEUTICAL BIOTECHNOLOGY CONFERENCE (1) ===== BDNF ========== Date : Thu, 15 Sep 94 16:04:25 MDT >From : "Gerald Armand Milette" Subject: BDNF I'm a 38-year-old patient with limb onset sporadic ALS. I've had symtoms for 2 and a half years now, including both upper and lower involvement. Since September 1 I've been involved in Amgen's BDNF safety trial and I have experienced substantial improvement of all of my symptoms. The most noticeable is my walking. At the start of the trial I was using a cane and was very unstable. Yesterday I walked for about twelve blocks without my can, and although I'm still wavering some at no time did I feel I was going to fall. In general, I've not felt this good for months. My speech has improved, my fingers have begun to straighten out, I can now get up from a chair with little difficulty, and the movement of every muscle feels much more normal and controlled. I would estimate that after two weeks on BDNF my symptoms have regressed about two months. That is to say that I'M NO LONGER GETTING WORSE. I'M GETTING BETTER. So far side effects include increased appetite (although that's now tapering off), some nausea in my stomach (that too is decreasing), and loose stools. The drug is administered through subcutaneus (under the skin) injections daily. I'm on .8 ml/day. Since it has only been two weeks, it's difficult to tell where this is going, but I'm feeling very optomistic. I'll keep you posted as to my progress over the next six months. Gerry (2) ===== News for ALS Digest ========== CompuServe Mail Date : 17-Sep-94 15:21 EDT >From: MARTIN I. WEINBERGER [72724,324] : Internet: (72724.324@compuserve.com) Subj : News for ALS Digest (This duplicates a message sent to the Prodigy Medical BB) I am sorry to record here the death of my wife at age 69, 3 yrs, 1 mo and 11 days after the sudden start of limb onset sporadic ALS. At the end she had no speech, barely handled saliva, and the only muscle under her control was her right eye - and even then, not fully. I would like to share several thoughts with you: 1. If you are going to have a procedure - like a stomach feeding tube for instance - do it sooner rather than later. 2. Prevent weight loss. One of the first ares to be consumed is the fat in the buttocks and that is never restored when you go on a liquid diet. The lack of padding will continue to haunt you as one becomes more and more wheelchair-bound. 3. You must have a carefully drawn living will. And it must be kept handy. 5am Sunday is no time to try to extract it from your safe deposit box or your lawyer's office, and you can bet your physician is off that weekend. 4. The millions of dollars being spent on ALS research will probably not benefit more than a few of the allegedly 5000 or so present sufferers. A portion of these funds should be used for nursing services, training and supplying health care workers. Every clinic should have a home-care expert along with the neurologist, PT, OT, etc. The best help I received during 3 years of clinic, bar none, was from a neuro-resident whose mother coincidentally had ALS (of course, she was on another rotation by the time of our next visit). 5. Every neurologist and researcher and clinic should be required to read the notes on the {Medical Support BB on Prodigy} - most of them have not the slightest concept of ALS from the patient's viewpoint. Hang in, all you caregivers. If there is anything I can do to help with anyone's questions, don't hesitate to buzz me on Compuserve (72724,324) or America Online (martyw3818). Distribution: CompuServe Mail To: BOB BROEDEL > [71107,1710] ** MARTIN I. WEINBERGER/News for ALS Digest ** (3) ===== Dr. Huggins Dental Clinic in Col Springs???? ========== >From : RonWM@aol.com X-Mailer: America Online Mailer Date : Sun, 18 Sep 94 00:40:28 EDT Subject : Dr. Huggins Dental Clinic in Col Springs???? Seeking information re: Dr. Huggins clinic in Col Springs. I am looking into removing amalgam fillings in teeth and hoping it will help in ALS treatment. Any info or help is appreciated. ==== = There is an e-mail discussion group called AMALGAM . To join that group one would send e-mail to: = LISTSERV@VM.GMD.DE ... ignore subject line, with first line of message = saying SUBSCRIBE AMALGAM yourfirstname yourlastname. ==== (4) ===== Neurontin ========== NOTICES: HHS/FDA - REGULATORY REVIEWS Federal Register 8-30-94, p. 44732. FDA determines regulatory review periods for the following drugs: ---------- o a 2,740 day review period for Neurontin(R), gabapentin, indicated as adjunctive therapy in the treatment of partial seizures with and without secondary generalization in adults with epilepsy; ---------- (5) ===== "Travel firms begin catering to disabled" ========== >From : GlennB7490@aol.com X-Mailer: America Online Mailer Date : Sun, 18 Sep 94 22:40:50 EDT Subject : "Travel firms begin catering to disabled" "Travel firms begin catering to disabled" There's no doubt that the travel industry has begun to recognize the demand for services that address the needs of the disabled. Among the information resources: * Society for the advancement of Travel for the Handicapped, (212) 447-7284, which promotes legislation and resources for disabled travelers in general and offers advice and assistance to individual travelers. It maintains lists of tour operators and other travel firms catering to the disabled, compiles information on accesssible facilities in cities worldwide and distributes a quarterly newsletter on developments in travel for the disabled. * Travelin Talk,800-365-1220, an international network of disabled people willing to share information on accessibility and services in their home towns. * Travel Information Service of Moss Rehab Hospital, (215) 456-9600, which has begun compiling accessibility information for 25 years and will provide information by phone on specific destinations. * A free 48 page pamphlet, "Access Travel: Airports" which detail facilities, services and accessible design features at 553 airport terminals worldwide. For a copy, write the Airports Council International- North America, Consumer Information Center, Pueblo, Colo 81009. *Speciality Newsletters: The diabetic Traveler(203) 327-5832 and the Handicapped Traveler Newsletter (903) 677-1260. Tour Operators: * Flying Wheels Travel, 800-535-6790, with tours and cruises worldwide for wheelchair travelers. * Evergreen Travel Service, (206) 776-1184, with programs for wheelchair, blind, deaf and senior travelers. *Accessible Journeys, 800-846-4537 or (610) 521-0339, with trips for mobility-impaired travelers. The firm also maintains a roster of nurses available for hire as travel companions. *Holiday Care Service, a British Organization that provides vacation planning assistance for elderly or disabeled travelers to Great Britain. Individuals must complete a questionaire, which is available from Holiday Care Serice, 2 old Bank Chambers, Surrey RH6 9HW, England; or the British Tourist Authority, 551 Fifth Ave, New York, NY 10176, (212) 986-2200 * Handicapped Scuba Association (303) 933-4864, a non-profit group that sponsors diving trips and certifies disabled divers and specially trained instructors. *Med Escort International 800-255-7182, which provides medically trained travel companions or personnel to help travelers make connections . *Mobility International USA (503) 343-1284, which promotes international exchanges for challenged travelers. * Traveling Nurses Network, (206) 694-2462, which provides nurses and other health professionals who can act as travel companions. Books: * "Traveling Like Everybody else: A practical guide for Disabled Travelers" By Jacquaeline Freedman and Susan Gersten (Adama Books, Bellmore, NY) * "Easy Access to National Parks" by Wendy Roth and Michael Tompane (Sierra club Books) * Motorists Guide for the Disabled Traveler: Britain-Europe (Royal Automobile Club) For other options consult : The Council of Better Business Bureaus Foundation, (703) 276-0100 which publishes booklets on the American Disabilities Act. (6) ===== INTERNATIONAL PHARMACEUTICAL BIOTECHNOLOGY CONFERENCE ========== Date : Tue, 20 Sep 1994 18:01:14 +0100 Sender : "EMBNet (European Molecular Biology Network) Distribution List" : >From : Dirk Vandenberghe Subject: INTERNATIONAL PHARMACEUTICAL BIOTECHNOLOGY CONFERENCE ----------------------------------------------------------------------- SECOND ANNOUNCEMENT **************************************************************************** *** The 2nd International Pharmaceutical Biotechnology Conference *** **************************************************************************** APRIL, 23 - 27 1995 GHENT, BELGIUM, EUROPE Main topics : Gene Therapy, Vaccines and Monoclonal Antibodies, Drug Delivery Systems, Modification of Plants, Drug Design, Biotechnology in the Treatment of Cancer, Pharmacoeconomics, Human Genome Project, ...... INVITED SPEAKERS: A. Angiuoli (USA) H. Galjaard (NL) H. Moereels (Belgium) G. Bleeker (USA) D. Crommelin (NL) M. Mareel (Belgium) D. Brizner (USA) W. Gibbons (UK) M. Soria (Italy) T. Blundell (UK) J. De Muth (USA) T. Osslund (USA) N. Burnette (USA) L. Hansen (USA) J-P. Osselaere (Belgium) R. Braeckman (USA) W. Fiers (Belgium) H. Robays (Belgium) S. Cohen (USA) I. Hart (UK) M. Van Montagu (Belgium) J. Chamberlain (USA) D. Heyd (Israel) K. Seamon (USA) R. Dobbelaere (Belgium)Ph. Johnson (USA) G. Reeder (USA) J. Cooke (UK) S. Huber (USA) N. Spurr (UK) President: Prof. Dr. E. Van den Eeckhout University of Ghent FFW Harelbekestraat 72 Tel: 32 9 221 99 43 B-9000 GENT Fax: 32 9 220 66 88 BELGIUM, EUROPE !!! Send your mailing (not E-mail) address to: Dirk.Vandenberghe@rug.ac.be if you want your name on our mailing list for more information and registration forms, and let me know if you are interested in : # poster session / abstract. # joining the International Association for Pharmaceutical Biotechnology. # exhibitor space (industrial forum). # pre / post - conference tours to beautiful cities in Europe. ################################################################## ##### Dirk Vandenberghe ##### ##### Laboratory Pharmaceutical Biotechnology ##### ##### University of Ghent ##### ##### Harelbekestraat 72 ##### ##### B-9000 GENT (BELGIUM) ##### ##### Tel.: 32 9 2218951 Fax: 32 9 2206688 ##### ##### E-mail: Dirk.Vandenberghe@rug.ac.be ##### ################################################################## == end of als 126 ==