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:   (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: 
 (“Grant Nicholas’ Web Site”)
 (“Al’s ALS Links”)

The Latest 45 Back Issues Only - (“Doug’s Beat ALS”)

Back Issues are also Available with full “Search Capabilities” at “Willem Oldeman’s Web Site”:

Will's ALS/MND Research Mail List – Created by Will Hubben
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:

International Alliance of ALS/MND Associations

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)
Mary Lyon, RN, MN
Vice President, Patient Services


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
MDA – ALS Division Website
MDA – ALS Information, Articles, & Materials
MDA – “ALS Newsletter”
MDA – “Quest” Magazine

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 OR

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

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

ALS – By Pamela A. Cazzolli, RN
Pamela is an ALS Clinical Nurse Consultant based in Canton, Ohio, USA

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
Family and Friends Community
Presented by the ALS Therapy Development Foundation (ALS-TDF)

Driving 4 Life

Driving 4 Bruce

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

Ride For Life, Inc.
A Not-for-Profit organization founded by ALS Patients, Caregivers and
those who care about people living with ALS

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

The ALS March of Faces – By Terry Franks and Kyle Hahn
“Brick By Brick” – ALS March of Faces’ On-Line Newsletter

“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

Kyle Hahn's ALS Infobahn
Note:  Kyle Hahn lost his battle with ALS on Saturday, August 9, 2003

ALS Doctor’s Guide
New Drugs & Information

Hope For ALS – Peter R. Clark, Founder of “Hope For ALS”
Focus On ALS – (“Debbie Tope’s Web Site”)

ALS Network – (“Cheryl Mathews-Prock's Web Site”)
(Note:  Cheryl lost her battle with ALS in February of 2000)

Doug’s Beat ALS – (“Doug Jacobson’s Home Page”)

“ALS – A Guide for Patients” – By Dr. Eric Livingston, M.D.

Paul’s MND Pages – (“Paul Vineburg’s Home Page”)

ALS Webring – Ring Master is Paul Vineburg
A Complete List of ALS Web Sites that belong to this Internet Webring;list

Professor Stephen Hawking’s Site

Text Only Version:
Graphic Version:
Steve Killeen’s Home Page – Irish Motor Neurone Disease Association (IMNDA)

Raising Hope – ALS Survival Project

Medical Alerts
MND FAQ – Presented by the Neurone Disease Association (MND) Association of Australia

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

ALS Talk… (formerly “The ALS Reporter”) – Created by Michael “Mikki” Lawson
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.

Jim “Catfish” Hunter ALS Foundation

Curtis R. Vance Foundation – By Heidi Vance

Charlie Wedemeyer Family Outreach (CWFO)

A Non-Profit foundation based in California that works with patients and families with ALS

The ALS Family Charitable Foundation

The Jack Orchard ALS Foundation

The Bill Roady ALS Foundation
The Angel Fund for ALS Research

ALS Hope Foundation
Positive Spin for ALS
Wings Over Wall Street
ALS Hope – The Chris Hobler / James Maritz Foundation

“ALS Is Not Fatal” –
Presented by PALS, William Kibbie
“ALS – A Beginner’s Manual” –
Presented by PALS, Cecil Neth, Family and Friends
An ALS Manual – “Living With It, Not Dying Of It” –
Presented by PALS, Bert Woodard

Brain Briefings – The Roots of ALS

Neuromuscular Disease – By Dr. John R. Bach

ALS Defined – American Academy of Family Physicians

By Dr. Anne D. Walling M.D. – University of Kansas School of Medicine, Wichita

Department of Veterans Affairs

Epidemiologic Research & Information Center (ERIC) – Durham, NC, USA

Study of ALS among Gulf War Veterans
Building a Motor Neurone Disease (MND) network for the UK
An On-Line Database for ALS/SOD1 Genetic Mutations
The “ALS Attack Squad” Project
Mapping People with ALS (M-PALS)
M-PALS is a “Grass Roots” project to collect and compile Geographical Data related to ALS

ALS/MDA Clinic – Houston, Texas, USA – Baylor School of Medicine
ALS Trials & Research:

ALS-PLS Research Foundation

Les Turner ALS Research Laboratory (Northwestern Illinois University Medical School)
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: (Claire Owen)

The John Bevan MND Research Unit – Centre for the Study of Health, Brunel University
University of Chicago – Department of Neurology
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

The Eleanor and Lou Gehrig MDA/ALS Research Center – Columbia University

Washington University School of Medicine (St. Louis, MO, USA)
Neuromuscular Disease Center OR OR

John Hopkins Medicine – The Center For ALS Research OR
The Robert Packard Center for ALS Research at Johns Hopkins Hospital

Yale University – ALS/MDA Program
New England Medical Center (Boston, MA, USA) – Munsat ALS Clinic
ALS 1996 and Beyond: New Hopes and Challenges – Loma Linda University
An ALS Manual for patients, families, and friends

National Institute of Neurological Disorders & Stroke (NINDS)

Homepage At:
ALS Site At:

World Federation of Neurology
ALS Info At:
ALS Functional Rating Scale (ALSFRS):

U.S. Food & Drug Administration (FDA)
ALS Info At:

National Organization of Rare Disorders (NORD)

Homepage At:
ALS/MND Site at:

“Family Village” – Waisman Center, University of Wisconsin-Madison
Amyotrophic Lateral Sclerosis (ALS)
The “Family Village” is a Global Community of Disability-Related Resources

Massachusetts General Hospital (MGH) – The Cecil B. Day Laboratory for Neuromuscular Research

The Cleveland Clinic
The Cleveland Clinic – Neuroscience Center
Homepage At:
ALS Info At:

The North East ALS Consortium (NEALS)
The ALS Consortium

PMC Isla Health System – Guam, USA

The Edelson Center for Environmental & Preventive Medicine
Homepage At:
ALS Page At:

Med Web Plus

Drug InfoNet / Infolink – ALS Site
(Information about ALS Medications)
Virtual Drug Store – ALS Page At:
Drugs Used for ALS

EMG and Nerve Conductions Homepage

Basic Neurology Made Easy – By Brian Glodt

List and Description of the most common Neuromuscular Disorders

Aventis Pharmaceuticals Products, Inc. – Manufacturers of “Rilutek” (Riluzole) Tablets

Sanofi-Synthelabo - Manufacturers of “Xaliproden” Tablets

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