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Informative Web Links Index Page

ALS Specific

ALS Forums and Chat
An open support community for people affected by ALS/MND.
www.alsforums.com/

ALS Independence
People Helping People
www.alsindependence.com

Bruce Edwards Foundation for ALS Research
The Bruce Edwards Foundation provides funds to medical research facilities dedicated to slowing the progression of and finding a cure for Amyotrophic Lateral Sclerosis (ALS). The Foundation was created in memory of Bruce Edwards, who died from ALS after a 16-month struggle against the disease. Bruce was the longtime friend and caddy of PGA golfer Tom Watson.
www.bruceedwardsfoundation.org

Prize 4 Life
Seeking to create breakthroughs in effective treatments for Amyotrophic Lateral Sclerosis (ALS) using the leverage of large inducement prizes.
www.prize4life.org

Information for Teens / Young Adults
ALS Society of Canada’s als411 resources for teens/young adults
http://www.als411.ca/eng/teens/resources.html


Clinical/Research

ALS Genetic Mutation Database
Alsod.org, the online database for ALS/SOD1 genetic mutations, is designed to provide both the scientific community and wider public with up-to-date information on SOD1 associated ALS.
alsod.iop.kcl.ac.uk/

ALS Patient Care Database
ALS C.A.R.E. is a voluntary, physician-directed program to improve outcomes for patients diagnosed with amyotrophic lateral sclerosis.
www.outcomes.org/als/

ALS Therapy Development Institute
A non-profit bio-tech organization whose mission is to seek, develop, and deliver therapies to slow, arrest, and cure ALS.
www.als.net

American Society of Human Genetics
The primary professional membership organization for human geneticists in the Americas.
www.ashg.org/

Dana Brain Web
Dana.org serves as a gateway to brain information, containing general information, current research and the latest news about the brain.  "Brainy Kids Online" offers a site with activities, puzzles, links to excellent educational resources, and lesson plan suggestions.
www.dana.org/brainweb

Fals Connect - Familial ALS Registry
https://fals.patientcrossroads.org/


Health & Medical

Christopher and Dana Reeve Paralysis Resource Foundation
Created in 2002 to provide a comprehensive, national source of information for people living with paralysis and their caregivers.  The PRC is a one-stop center that offers information quickly and compassionately. 
www.paralysis.org 

Communication Independence for the Neurologically Impaired
CINI seeks to improve the quality of life for people with ALS/MND by disseminating information about communication technology.  Site includes a guide to commercially available devices and a chat room regarding augmentative communication.
www.cini.org

BreathPlay
A breathing system that focuses on the active, spine-stretching outbreath and passive, relaxed inbreath
http://www.btbreathingtraining.com/

Caring Connections
Free resources and information to help people make informed decisions about end-of-life care and services before a crisis. 
www.caringinfo.org


National/International Organizations

ALS Society of Canada
This a national voluntary organization is committed to supporting research towards a cure for ALS and supporting ALS Partners in their provision of quality care for persons affected by ALS.
www.als.ca

International Alliance of ALS/MND
Associations on the Internet A group of more than 50 patient support and advocacy groups worldwide that have joined together to provide support and the exchange of information between the associations.
www.alsmndalliance.org

International Organizations, Motor Neuron Disease Association (UK)
They are the only national organization in England, Wales and Northern Ireland dedicated to the support of people with MND and those who care for them.
www.mndassociation.org

The Les Turner ALS Foundation
Provides resources and information to people with Lou Gehrig’s disease.
www.lesturnerals.org


Travel

Transportation Safety Administration (TSA)
Information for travelers with disabilities and medical conditions
http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm

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Lou Gehrig® used with permission of the Rip Van Winkle Foundation / www.LouGehrig.com