Date: Sun, 23 Jul 95 22:47:11 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD203 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#203, 23 July 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == 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 == == 840+ 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 (repeated messages) 2 .. ALS Digest Back Issue Sampler diskette 3 .. ALS Society of Canada now on-line 4 .. The ALS Association (USA) 5 .. re: low B12 levels 6 .. re: low B12 levels 7 .. ALS questions (from Rome) 8 .. Placebo Controls in ALS Clinical Trials 9 .. A Searchable Digest Format 10 . re: DeathNET 11 . Riluzole (European Union) 12 . Riluzole (Canada) 13 . re: Prodigy 14 . Lou Gehrig (1) ===== Editorial (repeated messages) ========== All subscribers should know that it is alright to repost notes that they have already posted to the ALS Digest. Because of the rapid rate of growth of the network, reposting of notes may be the only way to reach the many new subscribers. rgds,bro (2) ===== ALS Digest Back Issue Sampler diskette ========== A MSDOS 3 inch high density diskette will hold eighty issues of the ALS Digest. During the month of July over 200 of these diskettes were mailed to all points world wide. But more of them can easily be produced, so if you want a diskette with eighty of the most recent back issues, please send me your mailing address. There is no charge for the diskette. rgds,bro (3) ===== ALS Society of Canada now on-line. ========== By the end of July the ALS Society of Canada will have an e-mail address. They will be able to be reached at: alssoc@hookup.net Please send them a "hello" message. rgds,bro (4) ===== The ALS Association (USA) ========== For the latest news about Cephalon's Myotrophin, Rhone-Poulenc Rorer's Rilutek, Amgen/Regereron's BDNF, etc. people should contact: The ALS Association 21021 Ventura Boulevard, Suite 321 Woodland Hills CA 91364 TEL: 818-340-7500 FAX: 818-340-2060 Recent issues of their newsletter LINK and their ONE ON ONE mailings should be considered "required reading" for those interested in the latest news about ALS. They also maintain a list of clinical trial sites, a list of resources, a list of support groups, etc. (5) ===== re: low B12 levels ========== Date : Thu, 13 Jul 95 10:10:01 -0400 >From : "Dr. Kenneth Fischbeck" To : dianas@17indy2.gsfc.nasa.gov Cc : bro@huey.met.fsu.edu Subject: RE: low B12 levels Low B12 levels cause neurological problems rather than the other way around. The usual manifestations of vitamin B12 deficiency are sensory loss, abnormal sensations, and gait difficulty. Vision loss and dementia can occur. Weakness and spasticity (muscle stiffness) can also occur with B12 deficiency, as in ALS, but unlike in ALS the weakness is generally mild and accompanied by loss of sensation and other symptoms. Low B12 levels are most often caused by malabsorption (rather than dietary deficiency), and are usually associated with anemia as well as the above neurological symptoms. K. Fischbeck, M.D. Neurology Dept., Univ. Pennsylvania (fischbeck@a1.mscf.upenn.edu) (6) ===== re: low B12 levels ========== >From : dendrite@dsp.com Subject: ALS Bulletin Date : Wed, 12 Jul 95 11:48:54 EST Diana Lyons Specht writes asking about "neurologic diseases causing low Vitamin B12 levels". I think perhaps your hematologist meant that there are a number of neurologic conditions CAUSED BY low B12. These include myelopathy (spinal cord dysfunction), peripheral neuropathy, dementia, and optic nerve damage. Together, these are known as Subacute Combined Degeneration. No, I do not know of any connection between ALS and low B12. As noted above, there are a few similar findings, but it is unlikely that the two would be confused. D. Eric Collins, MD (7) ===== ALS questions (from Rome) ========== Date : Fri, 21 Jul 95 19:12:59 LDT >From : giraffe@VNET.IBM.COM Subject: AMYOTROPHIC LATERAL SCLEROSIS ======================================================================== My mother has recently been found to be affected by a rare disease called: AMYOTROPHIC LATERAL SCLEROSIS. The symptoms that my mother is experiencing now are: difficulties in walking, swallowing, breathing, speaking and she often has cramps during the night. At the moment, here in Italy, a real treatment for this disease does not exist. I would like to know if there is, all over the world , some specialized Center or association where I could refer to know about new treatments. I would also like to know if this illness could be confused with the "MIASTENIA". My internet address is : My name is : Paolo Falsi from ROME (ITALY). ............ Any info will be really appreciated. Thank you very much. Paolo Falsi (8) ===== Placebo Controls in ALS Clinical Trials ========== Date : Sat, 15 Jul 1995 12:46:40 EDT >From : TASM76A@prodigy.com (MR TED HEINE) Subject: a.l.s. Subject is Placebo Controls in ALS Clinical Trials. On March 9 I wrote to Dr. Zach Hall, Director of the National Institute of Neurological Disorders and Stroke, suggesting that NINDS establish a patient registry of placebo control patients from recent ALS clinical trials and that this registry would obviate the need for placebo controls in future ALS clinical trials, thus reducing costs for drug companies and also assuring that all patients in a trial receive active drug. This possibility had been suggested by Dr. Hiroshi Mitsumoto at a November 1994 meeting of the ALS Association's Advocacy Committee in Philadelphia. I posted a copy of the March 9 letter on the Prodigy ALS bulletin board and the Internet ALS Digest. At the American Academy of Neurology meeting in Seattle last May I discussed this concept with senior clinical directors from Amgen and Regeneron. Both indicated interest in the concept and suggested that NINDS was the organiza- tion to direct the effort. I had not received an answer from NINDS by May 19, when I had an oppportunity to meet Dr Hall in Chicago, so I gave him a copy of my March 9 letter. A telephone conversation with a NINDS staff person ensued. Last week I received a reply, dated June 27. The key paragraph reads as follows: "The NINDS does not fund an ALS patient registry. We would accept an application from a scientist for such a project as part of a meaningful epidemiological project. Such an application would, of course, undergo an intensive peer-review process and be expected to meet the same review criteria as other scientific projects supported by NINDS." It states further: "Again, the Institute would accept an application from a scientist for a trial using historical rather than placebo controls; however, as with all applications, it would have to meet the same review criteria as other scientific projects supported by NINDS." The letter also included interesting recent scientific articles on ALS and the issue of historical vs. placebo controls. The whole issue may become moot in the near future if one (or more) of the drugs (Rilutek, Myotrophin, BDNF) indicating effectiveness against ALS becomes the "standard treatment." The standard would then serve in lieu of placebo in clinical trials of newer drugs. Ted Heine in Waverly, Iowa (9) ===== A Searchable Digest Format ========== Date : 13-Jul-95 21:10 EDT >From: Grant L. Nicholas [74000.1616@compuserve.com] Subj : A Searchable Digest Format Since my first encounter with the ALS Digest, about 195 issues ago, I have been amazed at the depth and breadth of information it contains. This information is not just trade names or the like, but everyday experiences of those close to ALS. In the intervening time I have been attempting to find a way to make this information more readily available to the digest subscribers. To this end, I compiled, indexed, and distributed the digest in blocks of twenty-five issues. This really became a back-breaker, keeping up with all the possibili- ties of words to index was very time consuming, and only those words were searchable. I purchased a couple of software packages which offered the hope of cross-platform distribution. The platforms that I want to be able to reach are Macintosh, DOS, Windows, and Unix, and neither of the products worked in that wide of a mode. I recently became aware of a (to me at least) new product from Adobe Systems Inc. This product is called Adobe Acrobat, and it allows me to do just what I've been trying to do for so long. The product has three software levels, the "DISTILLER," which converts PostScript files into the Acrobat format (called Portable Document Format (PDF), which can then be viewed, searched, and printed by any one with the Acrobat "READER." The "READER" product is free! It is available on CompuServe (GO ADOBE), and on the Adobe Systems Internet World Wide Web location (http://www.adobe.com/). If you aren't connected to either of these services send e-mail to the Adobe Systems help desk(?) at webmaster@adobe.com. The third level of Acrobat is called "EXCHANGE." This product allows all of the services of the "READER, " but is enhanced to allow note placement. This product isn't germane to my note here, but I am using it professionally to great advantage. The digest has become a very large collection of data, data that can't readily be distilled into a FAQ, or other simplifying data sets. I believe that if the digest where complied with this product the ability to search for any term or word would become as invaluable as the digest itself is. Imagine the case where you want to relocate information on the Familial form of ALS, and the only thing you can remember about the article was the name (or perhaps half the name) of the researcher mentioned in the article (say Siddique, or Teepu, last and first name of a researcher at Northwestern University), search for either (or Northwestern), and BINGO, if he is mentioned in that block of digests the search engine takes you right to the location, and a single key takes you to the next iteration of his name. I am willing to convert the previously compiled digests into PDF files, the catch is I need someone to evaluate the worth of the project. This means that the evaluator would need to get a copy of Adobe Acrobat "READER: (free) from one on the sources I noted above, and see if there is added value to this method of distribution. I have converted the first set of digests and have discovered an added benefit, the WordPerfect 6.0 file is 435K, the intermediate PostScript file is 419.9K in length, the PDF file is a mere 225.5K long. The file can be attached to an e-mail message (provided the sender and receiver both use the same attachment language). A final need is a place to hang these files so that everyone has access to them. But let's see if that nut is worth cracking, if someone or several someone's' are willing to give this a whirl, so am I. cc: Aandi Inston 100126.1304@compuserve.com Adobe International webmaster@adobe.com (10) ===== re: DeathNET ========== >From : Subject: contribution Date : Fri, 23 Jun 1995 13:54:12 -0700 (PDT) ----------------------------------------------------------------------------- I have ALS and I'm going to die - but to find some reason to deal with a deathnet.....yuk! I could hardly believe my eyes when I read the offering of another Victoria resident, John Hofsess, concerning "DeathNET: A time to live, a time to die." I have no idea what Mr. Hofsess' experience with death involves. I'm satisfied, however, he has never tried it. I therefore consider him somewhat like a virgin going to a whorehouse to read a novel. Why the big interest in the death of others? Mr. Hofsess reached a degree of local notoriety a year or so ago when he and Canada's most famous homosexual Member of Parliament, Sven Robinson, were associated with Sue Rodrigeuz, also from Victoria, in her failed bid to the Supreme Court of Canada for the right to a doctor-assisted suicide. I believe Sue and Mr. Hofsess parted ways at Sue's request before she died. I can understand cemeteries, crematoriums, grave diggers and others who make a buck or two out of the death, but this deathnet thing seems to serve a morbid interest of Mr. Hofsess - or perhaps it's an opportunity to sell subscriptions to something or other. It certainly is not well known in Victoria or B.C., nominations for two Canadian Internet Awards (whatever that means) notwithstanding. Mr. Hofsess may be ready and willing to rationalize the right of a fetus to die in an abortion; the right of my brother to commit suicide or the right of me and others to die with ALS in our own way - but who needs him? I have all the information I need or want and I have the same access to available information as anyone else. My primary sources are local health authorities, my doctor and my ALS chapter. I can not believe the same or similar information is not available through avenues other than a deathnet. ---------------------------------------------------------------------------- (11) ===== Riluzole (European Union) ========== RHONE-POULENC RORER SUBMITS MARKETING APPLICATIONN IN EUROPEAN UNION FOR RILUTEK(R) (RILUZOLE) PARIS and COLLEGEVILLE, Pa., July 4 /PRNewswire/ -- Rhone-Poulenc Rorer Inc. (NYSE: RPR) announced today that it has submitted a Marketing Authorization Application (MAA) to the European Medicines Evaluation Agency (EMEA) for use of Rilutek(R) (riluzole) in the member states of the European Union as a treatment for patients with amyotrophic lateral sclerosis (ALS), also known as motor neuron disease. Rilutek will be reviewed using the centralized procedure. < parts deleted > The European Union (EU) comprises 15 member states: Austria, Belgium, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Luxembourg, The Netherlands, Portugal, Spain, Sweden, and the United Kingdom. ALS is a fatal neuromuscular disease affecting approximately 70,000 people worldwide. It attacks nerve cells in the brain and spinal cord, resulting in muscle paralysis and respiratory failure. < parts deleted > CONTACT: Bob Pearson, 610-454-3872, or Armelle de Kerros, 33-1-4091-6546, both of Rhone-Poulenc Rorer (12) ===== Riluzole (Canada) ========== TITLE : RHONE-POULENC RORER MAKES NEW DRUG SUBMISSION FOR RILUTEK(R) : (RILUZOLE) TO REGULATORY AGENCIES DATE : 07/10/95 SOURCE: Canada Newswire; CNW COLLEGEVILLE, Pa., July 10 /CNW/ - Rhone-Poulenc Rorer Inc. (NYSE: RPR) announced today that it has submitted a New Drug Submission (NDS) for Rilutek(R) (riluzole) to the Canadian Health Protection Branch. The submiss- ion is for use of Rilutek as a treatment for people with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. < rest of article deleted > (13) ===== re: Prodigy ========== Please remember the article in ALS Digest 200 about the Prodigy group's effort to use SOD1 mice to test a drug. On the 12th of July there was a CBS Evening News report about the experiment/research. Here is the address of the person who is doing the research. ===== = Dr. Leslie Johnson = Clinical Testing and Research, Inc. = 20 Wilsey Square = Ridgewood, New Jersey 07450 = E-mail: XHBP50A@prodigy.com ===== (14) ===== Lou Gehrig ========== >From : dave@magic.geol.ucsb.edu (Dave Robbins) Newsgroups: alt.sports.baseball.balt-orioles Subject : Cal and the Iron Horse Date : 26 May 1995 08:18:40 GMT Before Cal breaks Lou's record (which now seems inevitable), I thought some of his fans might be interested in that part of the legend he's about to shatter. By the way, I seem to remember Cal as a batboy in 1964 when his Dad managed the Aberdeen (S.D.) Pheasants although it may have been a brother as he may have been too young. As fate would have it, Lou Piniella played on that team. Little did I know that in that final year of Yankee supremacy, I was watching a man who would play a big part in their resurgence 13 years later. Dave Robbins ........................................................................... 1903 Jun 19 Lou Gehrig is born in New York City 1923 Apr 26 Columbia's Lou Gehrig is discovered by Yankee scout Paul Krichell 1925 Jun 1 Lou Gehrig plays in the first of his 2,130 consecutive games 1925 Jul 23 Lou Gehrig's 1st career grand slam leads 11-7 win over Senators 1925 Sep 10 Meusel, Ruth & Gehrig hit 3 consecutive HRs 1926 Jul 24 Ruth & Gehrig pull off a double steal for 2nd time in '26 1927 Jun 23 Lou Gehrig clouts 3 HRs in one game 1927 Oct 1 Lou Gehrig's 175th RBI sets a ML record (since surpassed) 1927 Oct 1 Yanks bat .307 as team led by Gehrig .373, Ruth .356 & Combs .356 1928 Oct 9 Ruth bats .625 and Gehrig hits .545 in sweep of St. Louis 1929 May 4 Ruth, Gehrig & Meusel hit back-to-back-to-back HRs for 2nd time 1929 May 4 Lou Gehrig's 3 HRs lead 11-9 win over the Tigers 1930 May 22 Ruth & Gehrig combine for 6 HRs in 10-1, 20-13 DH sweep of A's 1930 May 22 Lou Gehrig clouts 3 HRs in 20-13 win 1930 Yanks bat .309 as team led by Gehrig .379, Ruth .359 & Combs .344 1931 Sep 1 Lou Gehrig's 3rd grand slam in 4 days defeats the Red Sox 5-1 1931 Babe Ruth & Lou Gehrig both hit 46 HRs to tie for the AL HR title 1931 Lou Gehrig collects an AL-record 184 RBIs 1932 Jun 3 Lou Gehrig smashes 4 HRs in one game 1933 Aug 17 Lou Gehrig passes Everett Scott with his 1,308th consecutive game 1933 Ruth & Gehrig each collect 100+ RBIs for the 8th consecutive year 1934 Lou Gehrig wins Triple Crown leading both leagues in BA, HR & RBI 1935 May 15 Lou Gehrig steals home for the 15th time in his career 1935 Aug 21 Lou Gehrig's grand slam leads 14-2 triumph in St. Louis 1936 Aug 15 Gehrig's 8th-inning grand slam seals 16-2 triumph in Philadelphia 1936 Sep 9 Gehrig's grand slam leads 12-9 win as Yanks clinch 8th AL pennant 1937 Jul 7 Gehrig doubles & homers to lead 8-3 AL win in the All-Star Game 1937 Lou Gehrig collects 150+ RBIs for a ML-record 7th season 1938 May 31 Gehrig's 2000th consecutive game highlights 12-5 win over Boston 1938 Aug 20 Lou Gehrig's 23rd career grand slam leads 11-3 win over the A's 1938 Gehrig collects 100+ RBIs for a ML-record 13th straight season 1938 Sep 27 Lou Gehrig hits his 493rd and final HR 1939 Apr 30 Lou Gehrig plays in his 2,130th consecutive game 1939 May 2 Lou Gehrig benches himself while the Yanks shell the Tigers 22-2 1939 Jun 13 Lou Gehrig enters Mayo Clinic for tests 1939 Jun 19 Lou Gehrig is diagnosed with amyotrophic lateral sclerosis 1939 Jul 4 Lou Gehrig says he's "the luckiest man on the face of the earth" 1939 Jul 4 Gehrig's No. 4 becomes 1st uniform to be retired in ML history 1939 Dec 8 Lou Gehrig is elected to Baseball's Hall of Fame 1941 Jun 2 Lou Gehrig dies in Riverdale,NY of ALS 1941 Jul 4 Gehrig's monument is unveiled in centerfield of Yankee Stadium 1942 Jul "Pride of the Yankees" premiers starring Gary Cooper as Gehrig === end of als 203 ===