Date: Wed, 25 Jan 95 23:05:14 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#168 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#168, 25 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 == == 460+ 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 .. Joe Springer 2 .. re: Request 3 .. re: Request (2) 4 .. Query: ALS cluster reference needed 5 .. ALS Benefit 6 .. Going To Bat For Gehrig's Disease 7 .. Greetings from New Zealand 8 .. sad news about my father 9 .. GDNF & ALS 10 . people sought for study (1) ===== Joe Springer ========== Date : Mon, 23 Jan 95 13:12:09 CST >From : optimg!philw@insosf1.infonet.net (Phil Walsh) Subject: Joe Springer I just wanted to say how much I for one appreciated Dr. Joe Springer's observations on current ALS research. Very few of us have the time, training, or resources to keep up with current literature on ALS in the manner that someone actually in that field does. It is a very valuable asset for the ALS Digest to have someone like Dr. Springer willing to summarize current research and contribute his observations, and again, I'd like to thank him. Phil Walsh (2) ===== re: Request ========== Date : Sat, 21 Jan 95 22:12:01 -0500 >From : "Dr. Kenneth Fischbeck" Subject: RE: request I am not sure where your friend is located in the four state area you describe, but there are very good neuromuscular specialists in Tucson, Denver, Dallas, and Houston, who could help him with a definitive diagnosis. Drs. Larry Stern in Tucson and Stan Appel in Houston have national reputations in the field. For additional names, he could contact the Muscular Dystrophy Association headquarters in Tucson or an MDA-sponsored clinic in his area. K. Fischbeck, MD Neurology Dept., Univ. Pennsylvania Philadelphia, PA (fischbeck@a1.mscf.upenn.edu) (3) ===== re: Request (2) ========== Date : Sat, 21 Jan 1995 16:54:18 -0700 >From : gnicholas@lanl.gov (Grant Nicholas) Subject: re: Request James, I just read your request for a place to start looking for assistance for your friend. My Father-in-Law has ALS and is part of a research group for C.N.T.F. based in Albuquerque, NM. The doctor conducting the testing is a neurologist by the name of Raul Mandler. Dr. Mandler is with the University of New Mexico Medical Center. I don't have his phone number but looking in the phone book I find a UNM information number of (505) 277-0111, with a TDD number of 277-7733. There is a private listing ... oh boy, there is his office number tooo! Home # 291-3342, and his office # is 272-3342. I hope this may be of some help. I live in Albuquerque, and offer any other assistance I may give. Please don't hesitate contacting me via this e-mail address, I check the mail twice a day when away from my desk. Regards, Grant (4) ===== Query: ALS cluster reference needed ========== Date : 25 Jan 95 13:20:29 EST >From : "Ronald J. Leeb" <72613.2113@compuserve.com> Subject: Query: ALS cluster reference needed. The February 23, 1987 issue of TIME "Probing a Mysterious `Cluster'" of ALS, the article cited two clusters that I would like some more data on: "In Ohio three teachers who taught in the same school classroom developed the disease." And this "tantalizing" cluster: "So did six people living on the same hillside behind the Berkeley campus of the University of California." These six people probably were living among the castorbean plant, which grows on California hillsides, Guamanian hillsides, and is still being put into some mixed fertilizers. I'm convinced that my contact with the castorbean plants which grew in my California yard gave me ALS, and links me to the Berkeley hillside. Any references to the two citations above I would be grateful for. Let's Strike Out ALS in `95. Sincerely, Ronald Leeb (5) ===== ALS Benefit ========== Source: THE KANSAS CITY STAR 01/20/95 Column: WINING AND DINING < parts deleted > ALS benefit Adam's Rib Barbeque and Brewery , 9083 Metcalf Ave. in Loehmann's Plaza, celebrates its grand opening with a benefit for the Amyotrophic Lateral Sclerosis Association at 6 p.m. Wednesday. The raffle and auction feature an array of sports memorabilia including autographed items from Royals baseball great George Brett, ALS honorary fund-raising chairman. Guests also may bid on prints from artist Jim Ryon, entertainment packages and more. Proceeds from the event, which will feature live music, will benefit the local Keith Worthington chapter. Also, Adam's Rib will donate sales from its own beers - including Adam's Ale, Paradise Gold, Adam's Amber and Pit Viper Porter - to ALS. The restaurant's menu offerings include ribs, burnt ends, sausage, steaks, sandwiches, traditional barbecue and a variety of side dishes and appetizers. On the lighter side, shrimp, chicken and a selection of salads are offered. Hours are 11 a.m. to 12:30 a.m. Sunday through Wednesday; 11 a.m. to 1:30 a.m. Thursday through Saturday. -Compiled by Will Gray Jr. (6) ===== Going To Bat For Gehrig's Disease ========== Source: THE ARIZONA REPUBLIC 01/18/95 Title : SKY HARBOR SECURITY FORCE GOES UNDERCOVER Byline: MICHAEL CLANCY ; DOLORES TROPIANO, The Arizona Republic Column: CLANCY & CO. < parts deleted > GOING TO BAT FOR GEHRIG'S: The Amyotrophic Lateral Sclerosis (ALS) Association out did itself at its Herberger Theater fund raiser over the weekend, according to Linda Bay. The only drawback was emcee Claren Scott's laryngitis, but it didn't stop the association, which deals with the affliction - also known as Lou Gehrig's Disease - from grossing almost $20,000. (7) ===== Greetings from New Zealand ========== >From : "Ngaire Lennox" Date : Wed, 25 Jan 1995 10:56:59 GMT+1200 Subject: Greetings INTRODUCTION Tena koutou! Greetings everyone from Aotearoa/New Zealand. My name is Ralph Knowles and my partner's name is David Pine. In October 1994 David was diagnosed as having ALS (or MND Motor Neurone Disease, as it is known here). The diagnosis was reached after David's mobility did not improve following a (painful and expensive) operation to his upper spine. David's diagnosis is "familial MND" because his mother died of ALS/MND in November 1967; no other family members past or present are affected as far as we know. We are both employed by the Christchurch Polytechnic (like a US Community College) though David is no longer able to work. It was through the good services of the Polytechnic Library staff that we learned of the ALS Interest Group and ALS Digest. Many of the stories of people's experience with ALS/MND are similar to David's. And some of the suggestions have already been helpful in confirming what we are doing or providing alternatives. The various drug therapies aimed at the disease itself are news to us although David has various palliative medications to help him sleep and to reduce intense spasms. At this stage David is unable to walk and is having increasing difficulties even standing. He has a lot of strength in his arms and hands although there are signs that this is reducing. His speech is slow and a little slurred especially when he is tired - which seems to be most of the time but worse on hot days and in the mid/late afternoon on most days. After I have left for work each weekday morning, a community carer comes in to get David out of bed, to the toilet, dressed, and to the breakfast table. Friends and I look after lunch on a roster system. And I pick up full responsibility again when I return from work in the evening. New Zealand's health services have been "restructured" recently with more of the costs being directly met by the user. However, we are receiving very good support from the local health authorities who have provided David's wheelchair, electrically controlled bed, and lots of simple devices to help him manage daily routines. Our biggest practical problem right now is that it is more and more difficult for me to get David into our unhelpful shower cabinet. We cannot get funding assistance for bathroom alterations but are planning to make some at our own expense. Last week David celebrated his 50th birthday. His brother and sisters came from other parts of the South Island to be with him for a wonderful day and many friends visited, phoned, or sent cards. Now we are experiencing something of an anti-climax. My address is KNOWLESR@ADMIN.CHCHP.AC.NZ Best wishes to everyone with ALS/MND and to their personal and professional carers. Kia ora! Kia kaha! Let there be health and strength. (8) ===== sad news about my father ========== >From : dmullins@ccd.harris.com (Darrell Mullins) Subject: sad news about my father Date : Tue, 24 Jan 1995 11:03:49 -0500 (EST) I have some sad news, My father passed away Jan. 13th. My Dad was diagnosed with ALS in the latter stages of the disease. In retrospect, I am glad that he was diagnosed in the latter stages of the disease vs. knowing 5 years ago. I think it allowed him to fight this terrible disease until the end. I still want to stay abreast of what is happening with research and drug trials etc... I will always have the highest respect for my dad, he never complained after having everything stripped away from him i.e. his career, his ability to eat solid regular meals, his ability to walk etc.. Having a feed tube placed in his abdomen etc.. I just hope for some progress in the future in battling this disease. Thanks for all of your help & understanding. Take Care ************************************* * Darrell Mullins * * System Administration * * Harris Controls Division * * Phone # 407-242-5321 * * Internet dmullins@ccd.harris.com * ************************************* (9) ===== GDNF & ALS ========== Title: Growth factor as therapy By LIDIA WASOWICZ UPI Science Writer SAN FRANCISCO, Jan. 25 (UPI) -- A newly identified molecule shows promise as a possible future therapy for such neurodegenerative disorders as Lou Gehrig's disease and spinal muscular atrophy, scientists reported in separate studies Wednesday. Because of their potentially important clinical applications, growth factors -- of which this molecule is one -- have attracted intense interest in recent years from scientists looking for ways to prevent and protect against the neural cell degeneration that occurs in such disorders as amyotrophic lateral sclerosis, also called ALS or Lou Gehrig's disease, Alzheimer's, Parkinson's and spinal muscular atrophy, or SMA, the most common genetic cause of death in newborns. The latest findings, reported separately by four research teams from around the globe in the British journal Nature, underscore the possibility of a new treatment for ALS and SMA, two progressively paralyzing diseases that result from the death of motor neurons, or muscle-controlling nerve cells, in the spinal cord. < parts deleted > "A recently identified neurotrophic factor, a natural substance that protects nerve cells from destruction, shows greater potential as a posssible therapy for ALS and spinal muscular atrophy than any similar substance so far tested," the Muscular Dystrophy Association said in a statement. < parts deleted > "This is a very promising area of research -- the first thing we've had that looks like it might help treat central nervous system damage. Today's study suggests GDNF may have the greatest potential of all the neurotrophic factors for motor neuron diseases." < parts deleted > The latest studies showed GDNF "had the most profound effect of any neurotrophic factor tested so far in prolonging survival and preventing shrinkage of motor neurons after they've been injured," said Lucien Houenou, assistant professor of neurobiology and anatomy at Wake Forest University's Bowman Gray School of Medicine in Winston-Salem, N.C. < parts deleted > From these results, GDNF emerges as a promising candidate for further testing in connection with Parkinsonism and motor neuron disease, said Ronald Lindsay of Regeneron Pharmaceuticals Inc., in Tarrytown, N.Y., in an accompanying News and Views article. "The new reports on GDNF biology highlight how quickly the discovery of ligands is followed by assessment of their therapeutic potential," Lindsay said. "But further animal studies and more detail on ... GDNF . .. are necessary before we can see just how promising that potential is. " (10) ===== people sought for study ========== Source: THE PRESS-ENTERPRISE Riverside, CA.... 01/24/95 Title : 21 people sought for drug study Loma Linda University is seeking 21 people in the early stages of amyotrophic lateral sclerosis, a rare and incurable nerve disease known as Lou Gehrig's disease, for a six-month drug treatment study. < parts deleted > Loma Linda University is one of seven sites nationwide participating in a study of the drug Gabapentin. Under the name brand of Neurontin, the drug has been marketed as an anti-seizure drug. But some of its reported properties have prompted scientists to investigate whether it also can aid ALS patients. For information, call study coordinator Dee Moses at 799-5037. === end of als 168 ===