=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #837 (14 April 2001) == == == == ------ 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 == == 4700+ subscribers in 70+ countries. Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed. This newsletter is not intended to == == provide medical advice on individual health matters. == == Any such advice should be obtained personally from a == == physician. == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@met.fsu.edu (Bob Broedel) == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://www.glnicholas.com/ == == http://www.alslinks.com == == http://www.alssurvivalguide.com == == http://cc4144-a.ensch1.ov.nl.home.com/~digest == == http://health.oldeman.net == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Gene Therapy 2 .. Ride for Life 2001 3 .. ALS Story 4 .. methylcobalamin 5 .. Increased glutamate in ALS slowed by creatine 6 .. re: communications help needed 7 .. Adversity Leads To Success 8 .. Ride for Life NY 2001 Update #2 9 .. re: getting enough to drink (1) ===== Gene Therapy ========== Date : Thu, 12 Apr 2001 >From : Will Hubben Subject: gene therapy used in attempt to reverse progressive cell loss : in neurodegenerative disease >From Don Altiers: ------------------------------------ Web address of original story: http://www0.mercurycenter.com/premium/nation/docs/alzheimer11.htm Published Wednesday, April 11, 2001, in the San Jose Mercury News Gene therapy given to Alzheimer's patient NOVEL SURGERY USES PATIENT'S OWN CELLS Six days ago, a woman in the early stages of Alzheimer's disease entered a San Diego hospital, had a small hole drilled through her skull and was injected with millions of her own cells, in what researchers said was the first gene therapy tried on an Alzheimer's patient. The researchers who announced the experiment Tuesday at a news conference at the University of California-San Diego, where the surgery took place, said it was also the first time that doctors had tried to prevent progressive cell loss in a neurodegenerative disease. The 60-year-old patient, who asked to remain anonymous, was discharged from the hospital Saturday and is recovering well at home, said Dr. Mark Tuszynski, a neurologist at the university who led the research. "We hope to learn within the next three months if the procedure is working," he said. "But this is just one patient. It may take years before we know if it works in a large number of people." "This is a very important first step" toward finding a novel way to treat Alzheimer's disease, said Dr. William Mobley, chair of the neurology department at Stanford University, who is familiar with the research. "The work is being done very carefully. Their logic is very good." That logic is based on 20 years of exploring the changes that accompany normal aging of the human brain and the disease processes that lead to dementias such as Alzheimer's disease, Tuszynski said. Both conditions share certain biological mechanisms. For example, higher brain regions where language, memory and other cognitive functions reside are nourished by a chemical substance made in a small clump of cells, called the nucleus basalis, found deep in the brain. About the size of a human thumbnail, the nucleus basalis makes acetylcholine, which is sent to target cells all over the brain. Acetylcholine modulates the excitability of distant neurons, increasing or decreasing their electrical activity depending on the amount of the chemical supplied by the nucleus basalis. When a cell in a distant area gets particularly excited and needs more acetylcholine, it sends a signal, called nerve growth factor, back to the nucleus basalis asking for more. In Alzheimer's disease, some mysterious process kills cells throughout higher brain regions, and the nucleus basalis does not get the nerve growth factor that it needs to prod it into making more acetylcholine. Without acetylcholine, higher brain areas can be severely impaired. The gene-therapy experiments are intended to fix this problem by putting a source of nerve growth factor back into the nucleus basalis. First, researchers took skin cells from the Alzheimer's patient and inserted the gene that makes nerve growth factor. By adding substances that promote gene expression, they turned her skin cells into tiny nerve growth factor pumps. --------------------------- Will Hubben whubben@earthlink.net (2) ===== Ride for Life 2001 ========== >From : GHicok@aol.com Date : Fri, 13 Apr 2001 Subject: "Ride for Life 2001" Announcing the Fourth Annual Ride For Life 2001 The Ride 2001 will concentrate in the metropolitan New York area where there is great potential for awareness and donations. The Ride committee has made tremendous progress in planning and logistics. At this time, we are pleased to announce tentative details. The Ride will be across Long Island beginning at historic Montauk Point Lighthouse and ending on the fabled streets of Manhattan at the famous St. Patrick's Cathedral. Two days later, RFL will appear at Yankee Stadium during a pre-game tribute to ALS. The route will be approximately 160 miles and nine days in duration. This promises to be our best and most successful Ride. We are actively seeking PALS and participants. We are also seeking financial support from the ALS community. The Ride is a major event, which helps sustain our research and patient service programs. From last year's activities, RFL funded approximately $56,000 in research and $25,000 in patient services. Schedule: The Ride will begin Saturday, April 28th and conclude Sunday, May 6th. The Yankee reception and pre-game ALS tribute is Tuesday evening, May 8th. Events: Saturday April 28th Congressional send off and ceremony at historic Montauk Lighthouse Gala fundraiser and fireworks at Duckwalk Vineyards and Winery, Watermill Bicycle participation along 25-mile scenic ocean route Sunday April 29th Bicycle participation along 16-mile route Monday April 30th Suffolk County ALS Proclamation, Riverhead Tuesday May 1st Several school district stops, MDA Clinic at St. Charles Hospital, Port Jefferson Wednesday May 2nd Comsewogue Public Schools, Port Jeff Station Jacob Javits ALS Awareness Day- State University Stony Brook New York State Reception, Hauppauge State Office Buildings Thursday May 33rd Gurwin Geriatric Center, Northport Public Schools, Northport Friday May 4th Huntington Hospital, Huntington, Nassau County ALS Rally, Christopher Morley Park, Roslyn Saturday May 5th Flushing Park, Government Reception, Queens, St Patrick's Interfaith Prayer Service and Candlelight Vigil- limited seating Bicycle participation into New York City- 18 miles Sunday May 6th Drug research update and symposium/ registration required Tuesday May 8th Yankee Pre-game show- limited seating Participating PALS to appear on field at home plate Participation: RFL is seeking PALS to participate in mobility chairs as we ride. Fund raising off sets your costs. You can select all or just portions of the Ride to match you circumstance. Site events are also excellent to attend. RFL is also seeking abled-bodied participants to bicycle. Both weekends provide extraordinary bicycling opportunities. Bicycle participants will be expected to do pledges per mile or a similar pre trip fundraiser. Greg Hicok, a Ride veteran, will coordinate online distribution of general information regarding PALS participation. Contact him at Ghicok@aol.com Fundraising: Ride 2001 is conducted to raise awareness and also funds. There will be a variety of opportunities for PALS, family, friends and businesses to become involved. Since many PALS are unable to join us and still want to participate they can do so by helping us raise funds. As in the past, Ride t- shirts will be available mid April but orders will be taken beginning in mid March. Additionally, a special Ride button is being created. Look for all details on fundraising to be posted soon. There is also an opportunity for small businesses and larger corporations to be sponsors. Ray Manzoni has information on small business and corporate sponsorships. Contact him at Ray@Manzoni.com (3) ===== ALS Story ========== >From : "june" Subject: ALS story Date : Fri, 13 Apr 2001 I work with a women's internet site and this story will be online in May for ALS awareness month. The site is www.womentodaymagazine.com Thanks for reading, God bless, June (robine@uniserve.com ) (4) ===== methylcobalamin ========== >From : "Dean Chioles" Subject: methylcobalamin Date : Wed, 4 Apr 2001 http://www.lef.org/protocols/prtcl-008.shtml New Research Results on ALS Summary Physical, occupational, and speech therapies are important to the patient with ALS to make it easier to live their lives. Wheelchairs, foot braces, and other devices that can make it easier to use the telephone and computer are helpful in making the patient as independent as possible. Some supplements that may be beneficial to ALS patients are 1.. Coenzyme Q10, 100 mg (in an oil base for maximum absorption), 3 times a day. 2.. Methylcobalamin, 20 mg, 2 to 3 times a day. 3.. Vitamin C, 1000 mg 3 times a day. 4.. Vitamin E, 800 units 3 times a day. 5.. Beta carotene, 20,000 units a day. 6.. Creatine, 5 grams a day on an empty stomach. 7.. Zinc, 30 mg with food. 8.. Magnesium, 500 mg a day. 9.. Alpha-lipoic acid, 250 mg 2 to 3 times a day. 10. Acetyl-L-carnitine, 3000 mg a day. 11. Udo's Choice Essential Fatty Acids, 2 tablespoons a day. 12. Pregnenolone, 50 mg 3 times a day. 13. DHEA, 25 mg 3 times a day. 14. Selenium 300 mcg a day. 15. Grape-seed extract 100 to 300 mg a day.=20 Product availability: For a listing of physicians in your area who might be knowledgeable in these innovative approaches, call 1-800-544-4440. God Bless, Dean Chioles Dean@dls.net Http://www.Shoptown.com/Dean (5) ===== Increased glutamate in ALS slowed by creatine ========== >From : Dasroster@aol.com Date : Fri, 13 Apr 2001 Subject: Increased glutamate in ALS slowed by creatine Increases in cortical glutamate concentrations in transgenic amyotrophic lateral sclerosis mice are attenuated by creatine supplementation. Andreassen OA, Jenkins BG, Dedeoglu A, Ferrante KL, Bogdanov MB, Kaddurah-Daouk R, Beal MF. Neurochemistry Laboratory, Neurology Service, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts, USA Department of Radiology, MGH-NMR Center, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts, USA Avicena Group, Cambridge, Massachusetts, USA Department of Neurology and Neuroscience, Weill Medical College of Cornell University, New York Presbyterian Hospital, New York, USA. Several lines of evidence implicate excitotoxic mechanisms in the pathogenesis of amyotrophic lateral sclerosis (ALS). Transgenic mice with a superoxide dismutase mutation (G93A) have been utilized as an animal model of familial ALS (FALS). We examined the cortical concentrations of glutamate using in vivo microdialysis and in vivo nuclear magnetic resonance (NMR) spectroscopy, and the effect of long-term creatine supplementation. NMDA-stimulated and Ltrans-pyrrolidine-2,4-dicarboxylate (LTPD)-induced increases in glutamate were significantly higher in G93A mice compared with littermate wild-type mice at 115 days of age. At this age, the tissue concentrations of glutamate were also significantly increased as measured with NMR spectroscopy. Creatine significantly increased longevity and motor performance of the G93A mice, and significantly attenuated the increases in glutamate measured with spectroscopy at 75 days of age, but had no effect at 115 days of age. These results are consistent with impaired glutamate transport in G93A transgenic mice. The beneficial effect of creatine may be partially mediated by improved function of the glutamate transporter, which has a high demand for energy and is susceptible to oxidative stress. PMID: 11299300 [PubMed - as supplied by publisher] (6) ===== re: communications help needed ========== Date : Fri, 13 Apr 2001 >From : M Harrold Subject: re: "communications help needed" Betsy and others: I have used X10 systems to control devices and appliances for years. The company sells a unit called a Firecracker which allows a user to control lights and appliances from a PC. If you are familiar with their products, normal control is via a handheld remote control. The Firecracker has software that puts a virtual control on the PC screen and using a mouse, the user can control the same appliances or lights. It may be useful for people wanting to turn on TVs or control lights. See X10 website at X10.com, or go direct to this screen via the URL: http://www.x10.com/firecracker/fc_offer_br1.htm You can email me for more information. Mike Harrold MHarrold@ieee.org >I really need some recommendations for assistive communication devices >and what would work best for a PALS with no voice, and only eye and a >small amount of finger movement. He would like to access web, as well >as have some sort of communication other than us lip reading. Also, what >device is there that will let him control the t.v, lights, etc. Thanks >in advance for your help. Betsy (7) ===== Adversity Leads To Success ========== >From : "Louise and Robert Wilcox" Subject: ALS-Adversity Leads to Success Date : Thu, 12 Apr 2001 Please join us on May 5, 2001 for a 5k fun run/walk at Goddard State Park in Rhode Island. The East Greenwich Rotary Club is sponsoring this event, and all are invited to participate. Proceeds from the race will benefit the Rhode Island Chapter of the ALS Association. For complete information please visit the websight at http://www.teamals.org Thank you..... Hope to see you there! (8) ===== Ride for Life NY 2001 Update #2 ========== Date : Fri, 13 Apr 2001 >From : "mail " Subject: Ride for Life NY 2001 Update #2 Please share this information with everyone in the ALS community. Update #2 Ride for Life NY 2001 - Montauk to Manhattan April 28 - May 5 We'd like to alert you to the following Ride for Life NY 2001 Event(s): ***Bicycling on Ride for Life NY 2001*** Saturday, April 28, Sunday April 29, and May 5 We're looking for bicyclists to ride along with the ALS patients and other participants on Ride for Life NY 2001 Montauk to Manhattan. The biking will take place on three days: Saturday, April 28 Montauk Point to Bridgehampton via Route 27 Sunday, April 29 Bridgehampton to "The Big Duck" via Route 27 to Route 24 Saturday, May 5 Queens border to St. Patrick's Cathedral via Northen Boulevard and the 59th Street Bridge. If you are interested, you must contact Kevin McGinn at 631-754-3159 or email kmcginn@optonline.net on or before April 22, 2001 to reserve your spot. Or go to http://www.rideforlife.com/rfl2001bike.htm for more information. ***ALS Drug & Research Symposium*** On May 6, Ride for Life and the ALS Treatment Development Foundation will host an ALS Drug & Research Symposium in New York City, as part of Ride for Life 2001. Everyone is invited to attend this free, informative event, but registration is required. For more information go to http://www.rideforlife.com/rfl2001_alstdf.htm ============================ About Ride for Life NY 2001: For the fourth year, Ride for Life, Inc. (www.rideforlife.com) is planning another patient driven event to fight ALS. Called the Ride for Life, it is conducted by patients who are battling an untreatable, incurable and fatal disease with only their courage and determination. For the last three years, ALS patients have bravely driven their electric wheelchairs and scooters from Yankee Stadium to Washington DC. This year on Ride for Life NY 2001, the patients will be taking an 8 day, 160 mile ride from Long Island's Montauk Point Lighthouse to St. Patrick's Cathedral in Manhattan, from April 28 to May 5. These patients are quite literally on a 'ride for life,' for their own lives and for the lives 30,000 other Americans afflicted with ALS. Without a medical miracle, they will face almost certain death from total muscle paralysis. The patients are riding to raise funds for ALS research and to provide needed patients services. During the preceeding rides, the organization has raised over $180,000 to fight ALS. Ride for Life, Inc. is a not-for-profit 501(c)(3)organization founded by ALS patients, caregivers and those who care about people living with ALS. All of our board members and staff are volunteers and receive no money for their work. All donations are tax deductible to the extent of the law. For more information and to find out how you can help, please visit our website at http://www.rideforlife.com Thank you. Bob Cauttero Ride for Life (9) ===== re: getting enough to drink ========== >From : Sherryeco@aol.com Date : Fri, 13 Apr 2001 Subject: Re: Peter, It sounds to me, as a nurse with ALS, that you need a peg tube. I wrote an article on Peg Tube on ALS Digest 827 9. If you cannot get that digest I will rewrite my Peg Tube article for you. My email address is Sherryeco@aol.com === end of alsd 837 ===