=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#102, 26 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 == == 250+ 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 .. Editorial 2 .. Misunderstanding concerning ALS Society 3 .. BDNF trials 4 .. RE: Assistive devices 5 .. ALS among WALTON family 6 .. feet & footwear 7 .. conference announcement 8 .. biotech survey (1) ===== Editorial ========== First I want to extend a warm welcome to all of you who have recently joined the ALS Interest Group. Sorry, but as a caregiver to my ALS-afflicted wife, I have not always had time to give a proper response to your sign-on messages except to add you to the distribution list. But now ... welcome to ALS-ON-LINE! I suggest that everyone create kind of a personal introduction message about themselves that can be included in future issues of the ALS Digest. Messages should be sure to include information about your expectations of this e-mail network. That way others will be able to be more helpful to your needs. As always, interested people may "broadcast" messages to all subscribers by sending to: als@huey.met.fsu.edu , but the preferred method is that folks send to: bro@huey.met.fsu.edu with the messages being included in the weekly ALS Digest. One thing we have learned is that when the frequency of messages goes up ... ALS researchers, international subscribers, commercial subscribers, etc. tend to unsubscribe because of time and/or cost constraints. But for this network to be most effective we need *all* members of the worldwide ALS community. My suggestion is that those seeking multiple messages per day should also join the Prodigy group ... or perhaps another more free flowing group should be formed via LISTSERV. Unfortunately back issues (along with the INDEX that was created by Grant Nicholas) are not available on-line. But in the near future back issues (and the index) will again be available via e-mail at: LISTSERV@mailer.fsu.edu I am very thankful to all of the over 250+ subscribers who are making this network a useful tool for the ALS community. It has gone far beyond my origional expectations, but we still have a long way to go ... to discover the CURE for ALS. Sincerely, and with HOPE! Bob Broedel (2) ===== Misunderstanding concerning ALS society ========== Date : Mon, 23 May 94 09:50:13 EST >From : "Mike Doliton" Subject: Misunderstanding concerning ALS society Doug, Ok, now I understand what you meant. I think It's better to be shocked at first than to find out later. It might be cruel but once it's said then you can get down to living through it. I cryed a lot at first but now I'm adjusted to it (I think). Its lucky for us that all this research is going on. My only regret is that I got this ALS before the cure was discovered. Mike =========================== Reply Separator ========================== > > I can't believe you got such a negative comment as "you're living > on borrowed time" from the ALS society. > Mike, You misunderstood ...I meant that their literature made me feel like I was living on borrowed time. Everyone I spoke with was very helpful and supportive. The literature that they sent, however, was extremely depressing. I have been dealing with this now for three years, so am used to the commonly accepted prognosis. I cannot imagine what a newly diagnosed individual would feel after reading it. Doug =====------=====------=====------===== === Doug Jacobson === === Certifiable HyperCard Nut === === Friendswood, TX === === === === Email: === === jacobson@kn5f.jsc.nasa.gov === === jacobson@aol.com === =====------=====------=====------===== (3) ===== BDNF trials ========= >From : "Arthur W. English" Organization: Emory Univ., Anatomy & Cell Biology Date : 20 May 1994 16:42:25 EDT Subject: BDNF trials Can anyone out there give me more information on the press release yesterday concerning the clinical use of BDNF in human subjects by Amgen? I am especially interested in the sustained release nature of the investigations. Thanks. Arthur W. English, Ph.D. art@anat-ofc.anatomy.emory.edu OR medae@emoryu1.cc.emory.edu Department of Anatomy & Cell Biology Emory University School of Medicine 1648 Pierce Drive Atlanta, GA 30322 (404) 727-6250 Voice (404) 727-3677 Fax (4) ===== RE: Assistive devices ========== Date : Wed, 25 May 1994 22:48:10 -0500 >From : jdevereux@gcg.com Subject: RE: Assistive devices Hello, I am working on a list of hard won ideas about how to cope with ALS. This is my first draft. What do you think? Does anyone else have any hard-won's to contribute? Judi ------------------------------------------------------------------- Support Groups Madison MDA-ALS Support Groupdate: second Wednesday of each month time: 6:30-8:30 pm place: University of Wisconsin Hospital 600 Highland Ave. Rm D6/225 ALS Milwaukee date: second Saturday of each month time: 10:00-noon place: Milwaukee County Medical Complex Health Education Rm. 232 MDA-ALS Green Bay date: second Wednesday of each month time: 6:30-8:00 pm place: St. Mary's-Misericordia 1725 Dousman Street Green Bay, WI phone: 414-499-4571 Duluth Support group date: third Wednesday of each month time: 1:00-3:00 pm place: Polinsky Rehab Center Duluth Caregivers Support Group date: second Thursday of each month time: 11:00-2:30 pm phone: 218-725-5324 Northern Wisconsin ALS Support group date: first Sunday of each month time: 2:00 pm place: Chippewa Valley Bible Church Chippewa Falls, WI phone: 715-723-1694 ALS Newsletters The HopeLine newsletter- Southeast Wisconsin Chapter 414-445-PALS LINK newsletter-ALS Association 1-800-782-4747 Computer Bulletin Boards Helpful Local Agencies Access to Independence/608-242-8484/wealth of clever ideas to help make a disabled life easier Coping Techniques Renewing Life Support Group/Ingrid Dilley/608-251-3479 Support Group which deals with techniques to live with a catastrophic illness. Members have a variety of life threatening diseases. Talk to a therapist/psychiatrist Helpful Books and Publications Enabling Romance- deals with sexuality and the disabled Head First - deals with benefits derived from positive thinking Able to Travel- several stories about traveling with a disability For Better or Worse-suggests ways to cope for caregiver Financial Assistance Muscular Dystrophy Association Daily Assistance Ideas Use a dry cleaner that will pick-up and deliver your dry cleaning- in Madison call Lake Mills Dry cleaner Use a grocery delivery service for weekly groceries or to stock up on heavy, over size products- in Madison call Olde Time Grocery Delivery Hire neighborhood child to mow lawn - shovel walk Hire a cook for meal preparation-about 10 hrs/week Electric toothbrush Mail order catalogs- do more of your shopping over the phone Dual control Electric mattress pad- keeps you warm in winter and covers don't need to be adjusted as often Address ink stamp Signature ink stamp Use nose to press telephone numbers speaker phone Electric can opener Liquid soap Key extender-to help turn keys Buy large inventory of groceries Transportation Contact Department of Transportation for disabled parking permit Madison Metro - several bus lines have a pneumatic lift and equipment to handle wheelchairs and electric scooters. 608-266-4466 Madison Metro Plus- bus service which comes directly to your home 608-267-8787 Physical Therapy Swimming Use warm water pool at Harbour Athletic Club 608-831-6500/Lapham Elementary school 608-266-6450 Experiment with flotation jackets to keep you upright Walking- continue walking by going to a jogging track at a school or athletic club. Check out the local malls for walking times. Clothing Wear slippery pajamas or nothing to bed for easier turning Wear moccasin slippers around house to avoid tripping Velcro tennis shoes Slip-on shoes Elastic waist pants Dresses/skirts for women Loose elastic/large underwear for easier dressing Visions Easywear Fashions catalogue for adaptive clothing (velcro) Call for a catalogue 1-800-794-3119 Have a friend knit mittens without thumbs Wear slippery underwear so it's easier to pull pants/dresses up Don't wear underwear - easier to get to toilet Adaptive Aids Functional Rehab 4 wheeled walker Home Adaptation Ideas grab bars on side of toilet change door knobs to levers ramp - see back pages Caregiver Relief Medical alert system- contact local hospitals for information regarding an emergency alert button that contacts others for help 4 hour reprieve- ALS patient goes out with friend to give caregiver time to herself Allow others to care for als loved one Allow others to care for you Allow others to feed you Stay in bed in the morning for extra couple of hours to give caregiver quiet time/chance to get ahead on projects ALS patient spend a night with a friend Caregiver go on vacation with a friend Ask a friend to provide dinner one day a month Meals On Wheels Dresses/skirts for women Loose elastic/large underwear for easier dressing Visions Easywear Fashions catalogue for adaptive clothing (velcro) Call for a catalogue 1-800-794-3119 Have a friend knit mittens without thumbs Wear slippery underwear so it's easier to pull pants/dresses up Don't wear underwear - easier to get to toilet Adaptive Aids Functional Rehab 4 wheeled walker Home Adaptation Ideas grab bars on side of toilet change door knobs to levers ramp - see back pages Travel Use airport wheelchairs for airport terminal transportation Rent wheelchair or electric scooter at your destination - have it waiting for you at hotel Rent a condo/apartment in your favorite vacation spot-invite family/friends to stay with you-hire local people to assist you or to give caregiver a break Bring pump liquid soap Be willing to go the bathroom anywhere If you are not willing to go to the bathroom anywhere, consider using a bladder control pad such as Serenity to get you through a tough situation (long airplane trips, boat rides, etc.). Bring along a light weight camp stool to sit on when you are taking a shower. Sexuality Don't stop! Computer Software/Hardware Screendoors - on screen keyboard which allows you to enter text with a mouse or blow tube. Distributed by Prentke Romich Company 1-800-262-1990 Swallowing Difficulty Avoid speaking when eating Avoid distractions if eating is very difficult Think about each bite Keep head level or tilted slightly forward For additional tips on swallowing consult MEALS recipe book by MDA. Weight Gain Ideas Ensure liquid nutrition Pancakes-lots of buttery syrup Chocolate malts Liquid yogurt Recipes-Easy to Eat and Make Feeding Tubes Communication Aids Tape record voice while it is still strong- may be able to use your own voice with a communication device. Call Southeast Wisconsin ALS Chapter for a list of phrases and words. 414- 463-7717 Respiratory Assistance (5) ===== ALS among WALTON family ========== Date : Tue, 24 May 1994 23:10:11 -0500 (CDT) >From : Tom Phillips Subject: ALS among WALTON family Friends, I am interested in contacting any person with the last names of WALTON or PHILLIPS who have ALS running in his or her family. I have traced the disease through six generations (back to the 1830s) in these families. I am particularly interested in persons from the WALTON family in southern IN. I fear, however, that this family line has literally died out. Contact me if you know of anyone who fits the description which I have given. Thanks. Tom ====== == On CompuServe there is a massive phone book wherein one can == create a list of people (with address & phone number) with == the family name WALTON and or PHILLIPS. It could be used as == a starting point ... for mailed surveys, etc. but it would == cost quite a bit do do that. On CompuServe, GO PHONEFILE. == As an example, a search of the state of IN discovered that == there are 624 households with the family name WALTON. ====== (6) ===== feet & footwear ========== Date : Tue, 24 May 1994 01:31:47 -0500 (CDT) >From : Clive David Subject: feet & footwear A query: My feet usually have a peculiar sensation--extremes of stiffness and tightness over their entire surface. They also have a painful feeling of constriction and throbbing, even when I am wearing nothing on them. The constricted feeling becomes agonizing with any footwear on--even with sandals like Birkenstocks. Does anyone have a suggestion (or suggestions) about easing the above? In particular, about which types of footwear have been found to be more comfortable? (I was started on Baclofen as a trial for this and back pain. I discontinued this because it did not allow me to function properly in my job on a day-to-day basis. I prefer the pain to the medication alternative--for now, at least.) Thanks, and best wishes. --------------------------------- Clive David E-mail cdavid@worf.uwsp.edu (7) ===== conference announcement ========== Date : Thu, 26 May 1994 13:32:50 +0100 Sender : "EMBNet (European Molecular Biology Network) Distribution List" >From : Dirk Vandenberghe Subject: INTERNATIONAL PHARMACEUTICAL BIOTECHNOLOGY CONFERENCE ********************************************************************** *** 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, Gene Manipulation..... INVITED SPEAKERS (unlimited list 26-05-94) : T. Blundell (UK) H. Galjaard (NL) M. Moereels (Belgium) G. Bleecker (USA) D. Crommelin (NL) M. Mareel (Belgium) D. Brixner (USA) W. Gibbons (UK) M. Soria (Italy) A. Angiuoli (USA) J. De Muth (USA) T. Osslund (USA) N. Burnette (USA) L. Hansen (USA) G. Reeder (USA) 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. Dobbelaer (Belgium) Ph. Johnson (USA) P. Gantz (USA) Y. Yamada (Japan) N. Spurr (UK) J. Cook (USA) S. Huber (USA) 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 (!) address to: Dirk.Vandenberghe@rug.ac.be if you want your name on our mailing list for future 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@rug.ac.be University of Ghent Laboratory Pharmaceutical Biotechnology (8) ===== biotech survey ========== BIOTECHNOLOGY ANNUAL SURVEY, 1994 PREVIEW (INDUSTRY REPORT) KEMPER SECURITIES GROUP, INC.: Pandya, B., et al 02-16-94 17 Pages < most of this copyrighted document has been deleted> Product Approval Successes There were several successes during 1993 in terms of marketing approval of biotechnology products. Chiron Corp. received approval for Betaseron (beta-interferon) for the treatment of multiple sclerosis, a neurodegenerative disease affecting approximately 300,000 Americans annually. Betaseron is the first new drug approved for multiple sclerosis in the last 25 years. On December 31, 1993, Genentech Inc. received the FDA's approval for marketing Pulmozyme for the treatment of cystic fibrosis. Pulmozyme also turns out to be the first new drug approved for the treatment of cystic fibrosis in the last 30 years! Both Betaseron and Pulmozyme were approved in less than a year from the date of filing. Most investors did not anticipate such a rapid approval of either drug. Therefore, the stock prices of Chiron and Genentech gained approximately 49% and 35%, respectively, during 1993. It appears that Betaseron and Pulmozyme's successes also gave some boost to most other biotechnology stocks in the fourth quarter of 1993. In early 1994, Cephalon and Chiron Corp. announced a collaborative agreement for the research, development and marketing of several products for the treatment of neurological disorders. Under the terms of the agreement, Chiron will purchase 750,000 shares of Cephalon common stock, as well as warrants to purchase an equal number of shares from Cephalon, for $15 million. The collaboration will initially focus on the development of Cephalon's Myotrophin, or IGF-1, for the treatment of amyotrophic lateral sclerosis (ALS), as well as for a variety of peripheral neuropathies, most importantly diabetic neuropathy. The collaboration will also develop products from Chiron's portfolio, including human superoxide dismutase (hSOD) for the treatment of head injuries, basic fibroblast growth factor (bFGF) for the treatment of wound healing and cardioxane for the treatment of cardiac side effects in cancer patients receiving doxorubicin. Cephalon and Chiron alliance: a truely collaborative partnership The Chiron-Cephalon alliance is indeed an example of a truly collaborative partnership agreement that is worth much more to Cephalon than the dollar amounts involved. Both companies will share equally in the expenses and profits of these products over the life of the collaboration. Cephalon will be responsible for conducting current clinical trials of Myotrophin in ALS, whereas Chiron will be responsible for manufacturing Myotrophin. Cephalon will benefit from Chiron's 13 years of experience in manufacturing capability and from avoiding a capital investment of approximately $60 million for building a commercial-scale manufacturing plant. Cephalon is an emerging biotechnology company whose research and development programs are focused toward neurologic and neurodegenerative diseases. The company has two products in advanced stages of clinical development -- Myotrophin for the treatment of amyotrophic lateral sclerosis or Lou Gehrig's disease and Modafinil for the treatment of narcolepsy. In the second quarter of 1994, we look for Cephalon to initiate phase III clinical trials for Modafinil. We also expect the company to file an investigational new drug (IND) application for Myotrophin in the treatment of neuropathy associated with postpolio syndrome during the second quarter of 1994. During the fourth quarter of 1994, Cephalon may file an IND application for CEP-075, a small organic compound that has neurotrophic activity and an ability to cross the blood-brain barrier. Also during the fourth quarter, we look for Cephalon to announce its progress in clinical trials of Myotrophin in ALS patients and subsequently file an NDA application for Myotrophin in ALS. In 4Q 1994, Cephalon may announce results of Myotrophin in ALS patients == end of als 102 ==