ALS INFORMATION WEB SITES: ALS Digest If you have not already done so, subscribe to Bob Broedel's excellent “ALS Digest” This open forum digest includes feedback from People with ALS /MND, their Caregivers, Doctors, Researchers and many others with information pertinent to ALS/MND. To Subscribe to the “ALS Digest”, Send E-mail To: bro@huey.met.fsu.edu   (Bob Broedel) Or contact Bob Broedel at: P.O. Box 20049 Tallahassee, FL 32316 USA Back Issues of the ALS Digest are Available On-Line at:            http://www.glnicholas.com/ (“Grant Nicholas’ Web Site”)           http://www.alslinks.com/currentdigest.htm (“Al’s ALS Links”)           The Latest 45 Back Issues Only - (“Doug’s Beat ALS”)           http://home.earthlink.net/~jakesan/pages/alsdig.html Back Issues are also Available with full “Search Capabilities” at “Willem Oldeman’s Web Site”:           http://cc4144-a.ensch1.ov.nl.home.com/~digest OR           http://health.oldeman.net OR           http://212.120.112.230/~digest/ Will's ALS/MND Research Mail List – Created by Will Hubben TO SUBSCRIBE TO THE “RESEARCH MAIL LIST” GO TO: http://www.als.net/research/hubben/signup.asp It is Will’s objective to make this “Research Mail List” a selective and useful source of ALS relevant research information for the entire ALS community. Note:  Will Hubben lost his battle with ALS on Thursday, May 27, 2004 The searchable archive of Will’s Research Mailings is located at: http://www.als.net/research/hubben/archive.asp International Alliance of ALS/MND Associations http://www.alsmndalliance.org The ALS Association – USA – National Office 27001 Agoura Road, Suite 150 Calabasas Hills, CA  91301-5104 Tel:  1-818-880-9007 Fax:  1-818-880-9006 Tel:  1-800-782-4747 (Toll-Free Patient Hot Line) E-mail:  alsinfo@alsa-national.org www.alsa.org Mary Lyon, RN, MN Vice President, Patient Services E-mail:  mary@alsa-national.org Muscular Dystrophy Association (MDA) – USA National Headquarters 3300 East Sunrise Drive Tucson, AZ 85718 Tel:  1-800-572-1717 (Toll-Free in USA) Tel:  1-520-529-2000 Fax: 1-520-529-5417 E-mail: mda@mdausa.org http://www.mdausa.org MDA – ALS Division Website www.als.mdausa.org MDA – ALS Information, Articles, & Materials http://www.mdausa.org/disease/als.html MDA – “ALS Newsletter” http://www.mdausa.org/publications/als/index.html MDA – “Quest” Magazine http://www.mdausa.org/publications/Quest/ The ALS Survival Guide – (“Doug Eshleman’s Web Site”) The Most Comprehensive Source of ALS Information on the Internet Note:  Doug Eshleman lost his battle with ALS on Wednesday, November 28, 2001 Doug’s website will be continued and maintained by his wife, Irene http://www.lougehrigsdisease.net/ OR http://www.alssurvivalguide.com/ Steve Shackel’s Web Site – Excellent Information & Hope – This is a MUST Read!!! Anti-Oxidants, Medications, Supplements & Liver Function The most comprehensive information on the Internet regarding Vitamins, Herbs, and Nutritional Supplements to take in the battle against ALS http://www.goulburn.net.au/~shack/ E-mail:  shack@goulburn.net.au Nursing Tips For Living With ALS – By PALS and Nurse, Diane Huberty The primary focus of this site is about information regarding some of the medical complications that PALS (Person with ALS) face as a result of ALS http://home.att.net/~liveletdie5/ALS/ ALS Nurse.com – By Pamela A. Cazzolli, RN Pamela is an ALS Clinical Nurse Consultant based in Canton, Ohio, USA http://www.alsnurse.com/ ALS Therapy Development Foundation (ALS-TDF) ALS Therapy Development Foundation uses entrepreneurial spirit and techniques to aggressively seek out, develop, and deliver promising therapies to slow, arrest, and cure ALS http://www.als.net           Family and Friends Community           Presented by the ALS Therapy Development Foundation (ALS-TDF)           http://www.alscommunity.org           Driving 4 Life           https://www.driving4life.org           Driving 4 Bruce           http://www.driving4bruce.org Project ALS – Finding and funding treatments and a cure for ALS The mission of “Project ALS” is to bring the best basic science to people living with ALS in the form of effective treatments and a cure http://www.projectals.org/ Ride For Life, Inc. A Not-for-Profit organization founded by ALS Patients, Caregivers and those who care about people living with ALS http://www.rideforlife.com/ Al’s ALS Links – Internet Portal for the Global ALS Community – By Al Pickens Includes hundreds of links to various Web Sites to aide the Global ALS Community http://www.alslinks.com/ The ALS March of Faces – By Terry Franks and Kyle Hahn http://www.march-of-faces.org/           “Brick By Brick” – ALS March of Faces’ On-Line Newsletter            http://www.march-of-faces.org/ “What is ALS?” – An ALS Web Site Designed for Kids – Part of “The ALS March of Faces” Web Site Designed By Kyle Hahn and Terry Frank http://www.march-of-faces.org/KIDS/moe1.html Kyle Hahn's ALS Infobahn Note:  Kyle Hahn lost his battle with ALS on Saturday, August 9, 2003 http://www.kylehahn.com/ ALS Doctor’s Guide http://www.pslgroup.com/ALS.HTM           New Drugs & Information           http://www.pslgroup.com/DOCGUIDE.HTM Hope For ALS – Peter R. Clark, Founder of “Hope For ALS” http://www.hopeforals.com/ Focus On ALS – (“Debbie Tope’s Web Site”) http://www.focusonals.com/ ALS Network – (“Cheryl Mathews-Prock's Web Site”) (Note:  Cheryl lost her battle with ALS in February of 2000) http://alsnetwork.com/ Doug’s Beat ALS – (“Doug Jacobson’s Home Page”) http://home.earthlink.net/~jakesan/beatals.html          “ALS – A Guide for Patients” – By Dr. Eric Livingston, M.D.           http://home.earthlink.net/~jakesan/pages/guide1.html Paul’s MND Pages – (“Paul Vineburg’s Home Page”) http://www.users.bigpond.com/paulfran/Contents.htm ALS Webring – Ring Master is Paul Vineburg A Complete List of ALS Web Sites that belong to this Internet Webring http://a.webring.com/webring?ring=pals;list Professor Stephen Hawking’s Site           Text Only Version: http://www.hawking.org.uk/text/index.html           Graphic Version: http://www.hawking.org.uk/home/hindex.html Steve Killeen’s Home Page – Irish Motor Neurone Disease Association (IMNDA) http://www.iol.ie/~killeen/stevemnd/stevehom.htm OR http://www.iol.ie/%7Ekilleen/stevemnd/stevehom.htm Raising Hope – ALS Survival Project http://rampages.onramp.net/~jpyenom/          Medical Alerts           http://rampages.onra/~jpyenom/medical_alerts.html MND FAQ – Presented by the Neurone Disease Association (MND) Association of Australia http://home.vicnet.net.au/~mndaust/faq.html ALS PINpoint – (“Chuck Hollenbach’s Home Page”) Participate in Chuck’s excellent On-Line Research Poll regarding the suspected potential Causes and “Triggers” of ALS http://members.aol.com/alspinpoint/index.html ALS Talk… (formerly “The ALS Reporter”) – Created by Michael “Mikki” Lawson http://www.alstalk.org/ Turning Points In ALS – (“Wayne Phillips’ Web Site”) Purpose is to provide stories from PALS (People with ALS) and caregivers about turning points in their illness and how they handled these issues so others can find information, help, and encouragement. http://tpals.org/ Jim “Catfish” Hunter ALS Foundation http://www.catfishhunterals.org/ Curtis R. Vance Foundation – By Heidi Vance http://www.als-curtisvancefoundation.org/ Charlie Wedemeyer Family Outreach (CWFO) A Non-Profit foundation based in California that works with patients and families with ALS http://www.cwfo.org/ The ALS Family Charitable Foundation http://www.alsfamily.org/ The Jack Orchard ALS Foundation http://www.jackorchard.org/ The Bill Roady ALS Foundation http://www.billroady.org/ The Angel Fund for ALS Research http://www.theangelfund.org/ ALS Hope Foundation http://www.alshopefoundation.com/ Positive Spin for ALS http://www.positivespinforals.org Wings Over Wall Street http://www.wingsoverwallstreet.org/ ALS Hope – The Chris Hobler / James Maritz Foundation http://www.alshope.org/ “ALS Is Not Fatal” – Presented by PALS, William Kibbie http://alsisnotfatal.com/ “ALS – A Beginner’s Manual” – Presented by PALS, Cecil Neth, Family and Friends http://www.alscecilneth.net/ An ALS Manual – “Living With It, Not Dying Of It” – Presented by PALS, Bert Woodard http://www.siteone.com/health/woodard/ Brain Briefings – The Roots of ALS http://www.sfn.org/content/Publications/BrainBriefings/als.html Neuromuscular Disease – By Dr. John R. Bach http://www.doctorbach.com/als.htm ALS Defined – American Academy of Family Physicians By Dr. Anne D. Walling M.D. – University of Kansas School of Medicine, Wichita http://www.aafp.org/afp/990315ap/1489.html Department of Veterans Affairs Epidemiologic Research & Information Center (ERIC) – Durham, NC, USA Study of ALS among Gulf War Veterans http://hsrd.durham.med.va.gov/eric/als/als.htm build-uk.net Building a Motor Neurone Disease (MND) network for the UK http://www.build-uk.net/index.htm alsod.org An On-Line Database for ALS/SOD1 Genetic Mutations http://alsod.iop.kcl.ac.uk/cfdocs/alsod2001/index.cfm The “ALS Attack Squad” Project http://www.showrunner.com/folding.htm Mapping People with ALS (M-PALS) M-PALS is a “Grass Roots” project to collect and compile Geographical Data related to ALS http://superfund.ucsd.edu/als/ ALS/MDA Clinic – Houston, Texas, USA – Baylor School of Medicine http://www.bcm.tmc.edu/neurol/struct/als/als1.html           ALS Trials & Research: http://www.bcm.tmc.edu/neurol/research/als/als1.html ALS-PLS Research Foundation http://www.als-pls.org/ Les Turner ALS Research Laboratory (Northwestern Illinois University Medical School) http://www.lesturnerals.org           Les Turner ALS Foundation           8142 North Lawndale Avenue           Skokie, IL 60076-3322           Tel:  1-888-257-1107 (Toll-Free in USA)           Tel:  1-847-679-3311           Fax:  1-847-679-9109           E-mail:  cowen@lesturnerals.org (Claire Owen) The John Bevan MND Research Unit – Centre for the Study of Health, Brunel University http://www.brunel.ac.uk/research/cshsd/Motor%20Neurone.htm University of Chicago – Department of Neurology http://ucneurology.uchicago.edu/Neurological_Disorders/NeuroMuscular/ALS/als.html University of Miami – ALS Clinical Research Center Includes a very comprehensive list of ALS Clinics in the USA and also has a very in-depth list of ALS Web Site Links http://www.miami-als.org/ The Eleanor and Lou Gehrig MDA/ALS Research Center – Columbia University http://www.columbiaals.org/ Washington University School of Medicine (St. Louis, MO, USA) Neuromuscular Disease Center http://www.neuro.wustl.edu/neuromuscular/ OR http://www.neuro.wustl.edu/neuromuscular/motor.html OR http://www.neuro.wustl.edu/neuromuscular/spinal/als.htm John Hopkins Medicine – The Center For ALS Research http://www.neuro.jhmi.edu/alscenter/ OR The Robert Packard Center for ALS Research at Johns Hopkins Hospital http://www.alscenter.org/ Yale University – ALS/MDA Program http://info.med.yale.edu/neurol/CNeurophysiol/Welcome.html New England Medical Center (Boston, MA, USA) – Munsat ALS Clinic http://www.nemc.org/neuro/munsat/home6.htm ALS 1996 and Beyond: New Hopes and Challenges – Loma Linda University An ALS Manual for patients, families, and friends http://www.llu.edu/llumc/neurosciences/als/ National Institute of Neurological Disorders & Stroke (NINDS)           Homepage At: http://www.ninds.nih.gov/           ALS Site At:           http://www.ninds.nih.gov/health_and_medical/disorders/amyotrophiclateralsclerosis_doc.htm World Federation of Neurology           ALS Info At: http://www.wfnals.org           ALS Functional Rating Scale (ALSFRS): http://www.wfnals.org/Articles/ALSFRS.htm U.S. Food & Drug Administration (FDA)           ALS Info At: http://www.fda.gov/fdac/features/796_als.html National Organization of Rare Disorders (NORD) Homepage At: http://www.rarediseases.org/ ALS/MND Site at: http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Amyotrophic%20Lateral%20Sclerosis “Family Village” – Waisman Center, University of Wisconsin-Madison Amyotrophic Lateral Sclerosis (ALS) The “Family Village” is a Global Community of Disability-Related Resources http://www.familyvillage.wisc.edu/lib_als.htm#Web Massachusetts General Hospital (MGH) – The Cecil B. Day Laboratory for Neuromuscular Research http://www.massgeneral.org/als/ The Cleveland Clinic http://www.clevelandclinic.org/           The Cleveland Clinic – Neuroscience Center                     Homepage At: http://www.clevelandclinic.org/neuroscience/                     ALS Info At: http://www.clevelandclinic.org/neuroscience/treat/nerve/als/ The North East ALS Consortium (NEALS) http://www.alsconsortium.org/ The ALS Consortium http://www.thealsconsortium.net/ PMC Isla Health System – Guam, USA http://www.pmcguam.com/resource/als.htm The Edelson Center for Environmental & Preventive Medicine           Homepage At: http://www.ephca.com/           ALS Page At: http://www.edelsoncenter.com/als_case.htm Med Web Plus http://www.medwebplus.com/subject/Amyotrophic.html Drug InfoNet / Infolink – ALS Site (Information about ALS Medications) http://www.druginfonet.com/lougerig.htm Virtual Drug Store – ALS Page At: Drugs Used for ALS http://www.virtualdrugstore.com/als/index.html EMG and Nerve Conductions Homepage http://www.teleemg.com/ Basic Neurology Made Easy – By Brian Glodt www.fortunecity.com/greenfield/buzzard/387 List and Description of the most common Neuromuscular Disorders http://svt.ee.tut.fi/korpinen/disomenu.htm Aventis Pharmaceuticals Products, Inc. – Manufacturers of “Rilutek” (Riluzole) Tablets http://www.alsinfo.com/insert.htm Sanofi-Synthelabo - Manufacturers of “Xaliproden” Tablets www.sanofi-synthelabous.com                                                                   Back To Home Page