Links
The International Alliance has created a chat room for the use of any people to meet and discuss issues in relation to ALS/MND. Please feel free to organise chat sessions and use this facility as you wish. The Alliance will, from time to time, organise facilitated chat sessions and invite participation through its members. You can access the chat room by clicking here.
Weblinks
The International Alliance of ALS/MND Associations has created this section to assist people interested in ALS/MND to pursue information about the disease, research, and supporting organisations. Links to web sites below are monitored and checked on a regular basis. Please advise the Alliance at info@alsmndalliance.org if any link is inoperable. The Alliance wishes to thank all those people who have collected links regarding ALS/MND and from whom we have borrowed freely in the interests of people living with ALS/MND.
The Alliance has not evaluated the information contained on sites mentioned below. In some cases, the Alliance has not checked that the links are currently operable. The sites have been included in this page because people with the disease, organisations and researchers have recommended that they be included. The Alliance takes no responsibility for the information provided in web sites accessed from this page. Please see our standard disclaimer.
If you wish to add sites to this page, please send the web page address with a short description of the site to alliance@alsmndalliance.org
Specific ALS/MND Associations
Web sites and contact details for members of the International Alliance of ALS/MND Associations can be accessed at:
http://www.alsmndalliance.org/directory.html
World Federation of Neurology ALS Page
and a page with reviews of published ALS/MND clinical trials reports:
http://www.wfnals.org/trials/index.html
Research
The International Alliance recognises that people living with ALS/MND, friends, family and healthcare professionals are regularly seeking information on research into ALS/MND.
The International Alliance has collected from its members a list of web sites that publish research reports and the outcomes of research into ALS/MND. The Alliance does not have the skills or resources to review research outcomes, to interpret research, or to distribute research papers. The Alliance believes that access to research by individuals can be best supported by providing links to web sites that have been identified by its members and maintaining and growing this list.
Other ALS Sites
This section has been compiled to provide an easy starting point for the Internet ALS/MND journey. Some sites may be repeated as they fall into several categories.
ALS/MND Specific Sites
ALS Links.com
http://www.alslinks.com
ALS Network
http://www.alsnetwork.com
Focus on ALS
http://www.focusonals.com
Muscular Dystrophy Association ALS Page
http://als.mdausa.org/
Ride for Life
http://www.rideforlife.com
ALS Forums
www.alsforums.com
Living with ALS in India http://health.groups.yahoo.com/group/ALS_India/
Amyotrophic Lateral Scleroris http://www.amyotrophiclateralsclerosis.org/
Clinical/Research
ALS Patient Care Database
http://www.outcomes.org/als/
McKnight Endowment Fund for Neuroscience
http://www.mcknight.org
Prize4Life
www.prize4life.org
International Organisations
International Alliance of ALS/MND Associations on the Internet
http://www.alsmndalliance.org
World Federation of Neurology
http://www.wfnals.org
Pharmaceutical & Bio Tech
Amgen
http://www.amgen.com
Aventis S.A.
http://www.aventis.com
Cephalon
http://www.cephalon.com
Cyto Therapeutics
http://www.cyto.com
Eli Lilly and Company
http://www.lilly.com
Guilford Pharmaceuticals Inc.
http://www.guilfordpharm.com
Medtronic
http://www.medtronic.com
Novartis
http://www.novartis.com
Pfizer
http://www.pfizer.com
Regeneron
http://www.regeneron.com
Personal Sites
Professor D. Mark Cato's blog - Dying to Live with MND http://www.dmarkcato.com /
Steve Weekes' ALS Website
http://www.geocities.com/sweekes99/ALStitle.html
Mutley's MND Page
http://members.tripod.com/~MNDMutley/index.html
Steve Killeen Awareness Site
http://www.iol.ie/~killeen/stevemnd/stevehom.htm
Steven Shackel's Website
http://www.goulburn.net.au/~shack/
Robert Coutts - New Zealand
http://robertmnd.blogspot.com
ALS/MND Research
ALS Association - USA
http://www.alsa.org/research/
The ALS Therapy Institute
http://www.als.net/
Les Turner ALS Research Laboratory
http://www.lesturnerals.org/research.htm
Theories & Research
http://www.goulburn.net.au/~shack/theories.htm
National Registry of Veterans with Amyotrophic Lateral Sclerosis
http://hsrd.durham.med.va.gov/ERIC/ALS/ALSregistry.htm
This project is developing a nationwide registry of living US veterans (where ever they live) who have amyotrophic lateral sclerosis (ALS).
WFN-ALS World Federation of Neurology Research Group on Motor Neuron Diseases http://www.wfnals.org/
Other ALS/MND Sites Of Interest
Professor Stephen Hawking
http://www.hawking.org.uk
Rilutek Prescribing Info
http://www.alsinfo.com
N.O.R.D
http://www.rarediseases.org/
disaboom
http://www.disaboom.com/Health/LouGehrigsDisease/Default.aspx
Communication Aids
Communication Independence for the Neurologically Impaired (CINI)
www.cini.org.
Gus Communications
http://www.gusinc.com/index.html
Eyegaze Communication Software
http://www.lctinc.com/doc/ecs.htm
Technical Solutions Australia
http://www.tecsol.com.au/
EyeTech Digital Systems
www.eyetechds.com
Zygo Industries
www.zygo-usa.com/lighwrts.htm
E-triloquist
www.etriloquist.com
ProSpeak Augmentative Communication Software
http://www.ProfessionalGeeks.com
Please advise the International Alliance at alliance@alsmndalliance.org of errors or changes to the listed sites. Note that this is not a comprehensive list, nor has every site been reviewed. It is simply a starting point for information about ALS/MND.
International Alliance Web Committee