The Internet and World Wide Web contain a tremendous amount of information
on ALS/MND. Support groups, universities, medical and scientific
associations, drug companies, and many individuals are represented, most
with links to other sites. I have collected and sorted this list to help
you in your search for information. (Sites are not evaluated for content so
their presence on this list is not to be considered a recommendation nor a
guarantee of the reliability of the information they contain.) I have
also developed a separate FAQ listing Internet resources for equipment
commonly needed by ALS/MND patients.
Your input into keeping this list updated will be most appreciated. Please
e-mail me with any additions or corrections: kyle@march-of-faces.org
CONTENTS:
Advocacy Organizations
ALS Societies and Support Groups
Bulletin Boards (classified ads)
Business/Commercial (See separate FAQ for adaptive equipment websites)
Internet ALS Discussion Forums (newsgroups, email-lists, bulletin boards,
chat rooms)
Internet Newsletters, Magazines
Medical/Scientific
Personal Webpages (PALS webpages)
The ALS March of Faces: A patient/caregiver governed and operated non-profit
organization, dedicated to heightening public awareness of ALS, and
advocating on issues that concern and/or benefit PALS http://www.march-of-faces.org/
Hope For ALS. Non-profit corporation to raise awareness and monies for
research on treatments for ALS http://www.hopeforals.com/
Project A.L.S., Inc. is a non-profit organization that raises awareness and
significant funds toward effective treatments and a cure for ALS
www.projectals.org
Team ALS: Team ALS's goal is to increase ALS awareness and raise money to
fund ALS research projects by organizing, promoting, and/or participating
in Marathon races. http://www.geocities.com/teamals
The ALS Therapy Development Foundation uses entrepreneurial spirit and
techniques to seek out and develop promising therapies to slow, arrest, and
cure ALS.
www.als-tdf.org
Les Turner ALS Foundation Funds research programs, a patient clinic
affiliated with Northwestern University Medical School, a home liaison
nurse, a tissue bank, support groups, communication and equipment banks and
many educational programs.
www.lesturnerals.org
MNDA, UK website: explanation of motor neuron diseases, info on services
available, Helpline,
research. http://www.mndassociation.org
Vereniging Spierziekten Nederland (VSN) ALS Diagnostic Support Group http://www.vsn.nl
Web Of Care: Webpage for those caring for ill or disabled at home.
Information, support, and links to supplies, animated lessons in caregiving
skills, chat rooms, bulletin boards and more. http://www.webofcare.com/
"Kyle Hahn - Friends" a 2-CD 21 song music set. Withpost ALS compositions
featuring "Magik" as heard onCBS 60 minutes. http://kylehahn.com/friends/index.htm
Living-with-ALS Mailing list: A mail-list focused on support for PALS &
CALSand the exchange of information related to ALS. To join the list,
registerwith http://www.egoups.com and subscribe to Living-with-ALS.
Bulletin Boards:
America Online subscribers' ALS bulletin board: To get there:
eyword - -BHBoards, click General disAbilities
CompuServe subscribers' ALS bulletin board: Click on Go; Type mdaforum;
Read disclaimer then select Proceed, which sends you to the MDA forum. Now
you can browse the library or the message sections, both of which offer
information on ALS
Prodigy subscribers' ALS bulletin board:
jump Medical support bulletin board, subject: neurological, topic: ALS
ALS Message Board on Yahoo! From the Yahoo! main page, go to HEALTH
Diseases. Then, go to Message Boards and choose Alphabetical Listings.
Scroll down to find ALS. Free Yahoo! registration is required.
Web Of Care: Webpage for those caring for ill or disabled at home.
Information, support, and links to supplies, animated lessons in caregiving
skills, chat rooms, bulletin boards and more. http://www.webofcare.com/
ADELA: DIALOGOS SOBRE LA ELA: ALS E-mail magazine in Spanish: contact
Javier Ruiz at Mailto:adela@seker.es
MEDICAL/SCIENTIFIC
Basic Neurology Made Easy Explanations of the anatomy and what goes on
within the nervous system which will help you understand the disease
process, diagnostics, research, etc. www.fortunecity.com/greenfield/buzzard/387
Neuroscience Resources: A component of The World-Wide Web Virtual
Library; Cornell U Medical College Dept of Neurology and Neuroscience http://neuro.med.cornell.edu/
Doug Eshleman's ALS Survival Guide
A wealth of information on the disease and its progression, news updates,
legal/financial issues, equipment needs, links, articles by "guest
speakers" http://www.lougehrigsdisease.net
Raising Hope http://rampages.onramp.net/~jpyenom
Info on ALS, treatments, research, new items, forum for posting messages,
links,
****Books, cassettes, etc. purchased from Amazon.com using links from this
page will generate a 5-15% donation to fight ALS ****
