Date: Fri, 6 Jan 95 00:39:44 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#163 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#163, 05 January 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot'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. The ALS Digest is == == published (approximately) weekly. Currently there are == == 440+ 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 .. Letter to Dr. Hall of NINDS (from: Prodigy BBS) 2 .. Re: ALSA/PATIENT MTG (from: Prodigy BBS) 3 .. re: IVIG 4 .. The Newsgroup "alt.support.musc-dystrophy" Created 5 .. ALS & Ricky 6 .. SMA 7 .. Announcement of Web Server (1) ===== Letter to Dr. Hall of NINDS (from: Prodigy BBS) ========== Date : Thu, 5 Jan 1995 21:10:42 -0500 >From : JACKN74940@aol.com Subject: Re: ALSA/PATIENT MTG Bob, the PROD! group are prodding again! Here is a letter I sent to Dr Hall and others on Prodigy are doing the same .. maybe ALSers on Internet will also keep the pressure up.... DR ZACH HALL 1 January 1995 National Institutes of Health (NINDS) 9000 Rockville Pike Bethesda, MD 20892 Dear DR. Hall, I am writing you as a victim of ALS. I am 45 years old, married and have three daughters. My diagnosis was in October of 1992, and since then I participated in the Synergen CNTF drug trial. The disease continues to cause me general weakness in my arms and legs. Over the last two years I have known of many ALS victims that had died in hope. We have faith in Science, yet are very disappointed at the pace of drug testing by commercial sponsors. Would you please respond to the following set of questions? 1. It has been reported that GDNF has significantly more potency than either BDNF or CNTF. AMGEN has now gained control over all three potentially life saving drugs and is currently testing BDNF for Phase II trials. It will more then likely take at least a year before GDNF is tested in humans, would you solicit AMGEN to provide NINDS with GDNF for human safety testing? This would allow for parallel efforts to be going on. AMGEN undertakes phase III, BDNF, and NINDS starts phase I, GDNF. While companies are merged there is a lull in the operations, we expect the same out of the AMGEN/Synergen merger. Time is running out for many of us and there needs to be a sense of urgency. Research must not sit on the table once published it must be acted upon! 2. Sporadic ALS symptoms are similar to the hereditary form. Will NINDS continue the investigation into genetic links to sporadic ALS? When will you start? In conjunction with this what is the status of the ALS patient registry? Let there be little doubt the lack of a central repositroy is appalling and as a victim of this disease I would gladly provide whatever data is necessary. It would also be criminal to lose the data collected from the drug trials. This data needs to be captured before it is lost. 3. Dr. Mitsumoto of the Cleveland clinic and Dr. Brooks are developing a safety study for combination drug trials of BDNF and CNTF. Would the NINDS consider a combination drug trial with both drugs while AMGEN continues its BDNF trial? The literature supports combination treatments as a potential for arresting ALS. This was reported over a year ago and progress in this area has been unremarkable, since publication. 4. Patients have identified a generic drug called phenyl-tert- butylnitrone (PBN) that has significant free radical fighting capability. Members of the PROD! support group are attempting to underwrite animal testing of this drug. We would like to receive NINDS funding for the animal testing in the ALS transgenic mouse and then human trials, if efficacy is determined in animals. Could you advise us on how to obtain this support? Because it is a generic drug, we expect no support from drug sponsors and would expect the NINDS to take a leadership role in this venture. Please note that the NIH has previously provided grants NS23307, AG09690 and CA42854 researching the potential of PBN. In August of 1993, Science magazine reported that the NIH was suffering from 1) Entrenched senior researchers who head laboratories and often stifle the creative impulses of younger scientists; and 2) Many promising researchers no longer consider coming to the NIH - " I am hoping with your arrival things will change. Your press release states the NINDS mission, during the decade of the brain "will be to provide THE SCIENTIFIC LEADERSHIP and institutional support to sustain these advances" Unfortunately, while NINDS has had no director thousands of ALS patients have died because of not errors of commission - reckless risk taking, but errors of omission - ignoring potential life saving treatments and not doing anything about them! DR. Hall you can make a difference in stopping ALS. As a member of the PROD! a bulletin board support group of over 350 members, I welcome you to the fight and our Quest! We look forward to hearing from you very soon! Sincerely, Jack Norton (2) ===== Re: ALSA/PATIENT MTG (from: Prodigy BBS) ========== Date : Thu, 5 Jan 1995 21:19:43 -0500 >From : JACKN74940@aol.com Subject: Re: ALSA/PATIENT MTG Report from ALS Association posted on Prodigy - see followup letters from ALS patients : RE: Meeting with Dr. Zach Hall, Director, NINDS On Friday December 9 Robert Abendroth, Chair of ALSA's Research Committee and I met with Dr. Zach Hall the newly appointed Director of NINDS. Dr. Patricia Grady, Deputy Director of NINDS also attended. The meeting was one hour and very cordial. Dr. Hall spoke of the importance of ALSA's advocacy efforts and how we are the voice of the patient to Congress. He noted how our efforts remind Congress of the urgency that is facing patients today. Dr. Hall commented on all the recent research developments and the excitement in the scientific community about ALS. He complimented the ALS Association's advocacy and research efforts. He strongly believes the disease can be solved. During the course of the discussion, ALSA brought up the following topics: * ALSA workshops and NINDS participation * The need to increase both intra and extramural NINDS ALS research * GDNF and the recent SCIENCE article * An ALS patient registry * Continued communication between ALSA and NINDS Dr. Hall made no promises but was very open to our ideas. We will remain in touch with Dr. Hall and will meet with him again in the Spring. We will continue to provide you with nformation as it becomes available.. ALS Association (3) ===== re: IVIG ========== Date : Tue, 03 Jan 1995 23:03:33 EST >From : DGGG13A@prodigy.com (MR NOLAN STRONG) Subject: Re: ALSD#159 ALS-ON-LINE (retransmission Stan, I was dx'ed with similiar symptoms and faced with similiar choices.I have LMN primary indications and have been tested at least 6 times at Mayo and here in Dallas. IVIG was/is a possibility, but have not tried. Baxter and Gammagard-IVIG was best deal back in 1992 when I did some checking. You might ask if they have "research price" thru local slsmn. Info might still be available by calling (800) 423-2862 and requesting packet of info. (4) ===== The Newsgroup "alt.support.musc-dystrophy" Created ========== Listname: "Muscular Dystrophy - Patients, Family, & Friends" : Date : Mon, 02 Jan 1995 20:30:56 EST >From : GMJW69A@prodigy.com ( JUSTIN MONASTESSE) Subject : The Newsgroup "alt.support.musc-dystrophy" Created At the request of several individuals promoting this newsgroup, and after reading the discussion on alt.config, I went ahead and created the newsgroup "alt.support.musc-dystrophy", a support forum to discuss muscular dystrophy. If your site does not get this newsgroup, do contact your sysadmin/ newsadmin and ask them to subscribe to it. Hopefully, some of this newsgroup's proponents will post a Charter/ statement of purpose. Jon Noring (5) ===== ALS & Ricky ========== Date : Tue, 3 Jan 1995 12:16:36 EST Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3692 ====================================================== Subject : Re: ADA, ALL WE HAVE GAINED IS IN PERIL! >From : ricky998@delphi.com (Richard) Organization: Delphi (info@delphi.com email, 800-695-4005 voice) I would not have a clue what it meant to be disabled .... One couldn't imagine what it means to be disabled. I found out 6 months ago I have ALS or more commonly referred to as Lou Gehrigs Disease. I suffered from symtoms long before I conculted a Dr. thinking it was an old pair of shoes that were at fault... I visited my Sister in WVA... and she was beside herself in referance to how I was walking.. made me swear when I got home I would go to a Dr. Well... I came home and got a new pair of shoes... only I found out the shoes had nothing to do with going over on my left ankle.. I Still ma amazed that my ankle never broke, considering the number of times i went oveer on it HARD. I did go to my Dr. He examined me an announced to me that the tremors in my legs were being caused to AIDS... Well... I was a Medical Technologist who worked 20 years in a Blood Bank.. who knew betteer than I about Aids... He asked me if I ever had sex with a male.. NO was my reply... How dare he make such a statetment as that to me... Now Don't get me wrong here... I am gay... Not because I wanted to be.. but because I had no other choice. However, I think his statement was way off base... Yes Aids can exhibit the same thing when the Aids Patient has the virus attacking the brain... but that doesn't happen until shortly before death usually... He sent me to a Neurologist... who proceeded to run every test in the book and announced to me that he could find nothing wrong with me.. every test was normal.... But I said (as I did at our first meeting) what about the mucsles twitching in my legs.... what he says... I have nothing in my notes about this.... I thought to myself... another winner... them came the EMG... I could not begin to explain that one sufficiently... electricity attacks every muscle in your body and as if that is not enough they stick long needles into all the various muscle joints... Now mind you I do not yet know what the result will show... but I told him that I thought I knew what the Dr. was going to tell me.... My brother asked me what and I said I will die form what I have.... OH NO WAY was brothers reply... you worry toooo much. Then the day of the appointment I arrive and am called in to speak to the Dr. He asks me if I had ever heard of Lou Gerhig.. ceretainly was my reply... I had seen the movie in TV Several times.... very heart wrenching story... Well.... The Dr. Says you have Lou Gerhrigs ximy esp usually is on the mark... I didn't have the name but It already had decided I would die from it. I live out of a wheelchair now.... with a brace for my left foot I can get around with a walker. Not for long distances... I live on a second floor condo. with only steps to get down to the ground level... Finding an apartment handicapped accessible was a joke I soon found out. But then came a break.. I was out with some freinds of mine and we passed an apartment complex and they were still building at that place.... My frieind went in for me and explained what I needed and if they could provide that.... That kind soul lady came out to the car to talk to me. And said there was a very good chance she would have something after the first of the year... I called her again after that to inquire which modle might be available and she replied the Dogwood... Great was my reply.. that is the one circled in your brochure. And I did have one more question... pets? yes ..I mean a 250 deposit for one.. but.. It seemed like a dream come true. You can imagine if you too are in a wheelchair what damage one can do in a non-handicapped house.... walls.. doorways.. corners.. whoosh.... I now go to the Johns Hopkins Hospital primarily for free and I am participating in a drug study.... me .. scared to death of needles.... but in the end rose to the occasion and found out it was a piece of cake... subcutaneously.. The best part I would have to say is when I went to JHH they had to do the EMG over again.... and a spinal tap.... I can still feel that pain....he used a big needle to go in and couldn't get a good flow....so He says I will get a smaller needle and try another place.... great I thought... then again piercing my inner most being announce to me that it was still slow and He would get the bigger setup and go in that same hole... now you and I know that is impossible to do.. and I asked him if we could avoid that.... he said well I will have to stay here longer than usual to get alll the tests your Dr. has ordered.. He finally gave up (much to my relief) without getting the last test which was the most amount... When I saw my Dr. I siad that spinal was the worst thng that I have ever experieinced.. she apologized.... and I asked Do I have to do it another time to get that last amount.. NO she said... everything was normal so there is no reason to do the last test at all... bless her heart... And now I feel bad for thinking to myself how neat it would be if I didn't have to work..... and it came true.... and then you find out you are stuck on the second floor until someone comes and gets me... The Dr. urged me to stop driving and I did.... because I had a stick and it was getting more and more difficlult for me to push that chlutch in far enough.. and my leg would get very tired in bumper to bumper traffic.... And that is a thumb nail version of becoming handicapped... it was no picnic. Ricky998 (6) ===== SMA ========== Date : Tue, 6 Dec 1994 01:00:34 EST Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3666 PART (1) ---------- Subject: Re: SMA >From : daag@cix.compulink.co.uk ("David Greenhalgh") Thomas I suggest you contact June Price who edits the newsletter Living SMArt which is for those living with Spinal Muscular Atrophy. She can be contacted at pricezrite@aol.com Dave @ the caravan PART (2) ---------- Subject: Re: SMA >From : iiggii@mixcom.com (KMJ Enterprises) > >From : thomas@oslonett.no (Thomas Lageraaen) >Subject: SMA > >Anyone in this newsgroup with Spinal Muscle Attrophy (SMA) ? > >====================================================================== >| Thomas Lageraaen ...................... E-Mail: Thomas@OsloNett.No | >| ...................A Norwegian Speaking Net-Surfer................ | >====================================================================== Hi Thomas - My wife has sma and she (or one of her friends) will likely be getting in touch w/you in the near future. They write a newsletter for adults w/sma and are always looking to network w/people interested in the disease. ...Hank (43 00 42N 88 13 53W) (7) ===== Announcement of Web Server ========== Date : Tue, 03 Jan 1995 09:23:55 -0600 >From : Saklad@uthscsa.edu (Stephen R Saklad) Subject: Announcement of Web Server To : pharm@de-montfort.ac.uk (Pharmacy Mail Exchange) I am happy to announce that the Web server for the University of Texas College of Pharmacy is up and running. It is quite limited right now, but will be expanded as time goes on. The URL is: http://saklad.uthscsa.edu/ The main area that is covered right now is the Conference for Psychiatric and Neurologic Pharmacy (CPNP). If you are a pharmacist that works in the areas of psychotropic drugs, neurologic diseases, people with developmental disabilities (aka mental retardation), substance abuse, chronic pain, etc., then you are strongly encouraged to participate in this group. If you have any question, please ask. There are several members of CPNP that subscribe to this list. Any of them will be happy to answer questions that you may have. I would appreciate any comments or suggestions that you may have. Steve ._________________________________________________________________________. | Stephen R. Saklad, Pharm.D. U U TTT saklad@uthscsa.edu | | Psychiatric Pharmacy Program U U T (210) 567-8355 (Voice) | | The Univ Texas College of Pharmacy UUU T (210) 567-8328 (FAX) | |_________________________________________________________________________| === end of als 163 ===