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Assistive Devices for the Less-Abled
“Strategies That Can Make A Difference”
Telephone: 1-716-633-5654
Email:
bdbohm@DonnasJourneyWithALS.com
www.DonnasJourneyWithALS.com
ALSconnection
is a patient driven ALS registry that aims to collect data from persons
with ALS. It is coordinated by Dr. Robert Miller, Dr. Jonathan Katz and Dr.
Catherine Madison who are physicians with a vast experience in treating ALS
patients.
This data base aims to collect information from PALS (Person with ALS) who
are not yet captured in data bases such as ALS Care. We choose to collect data
on the internet, because we hope to reach more people in different regions of
the nation. The goal is to obtain long-term follow up data and information
about quality of life as well as experiences of PALS.
(Forbes Norris MDA/ALS Center)
http://www.alsconnection.org
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
ALS
Portal for the ALS Community
ALS
Network
ALS Digest
#1194 (10 September
2003)
www.alslinks.com/HTML%20ALS%20Digest/alsd1194.htm
ALSA Upstate NY .
Org
www.alsaupstateny.org
ALS
Nurse.com
www.alsnurse.com
ALS Support Network
www.alssupportnetwork.com
ALS
Survival Guide
Aventis Pharmaceuticals Products Inc.
Rilutek (Riluzole) Treats Amyotrophic Lateral
Sclerosis (ALS)
(A web Site with extremely helpful information and
links to many other significant informative websites
)
http://www.alsinfo.com/index.jsp
Focus on ALS
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)
E-mail: alsinfo@alsa-national.org
Forbes Norris ALS/MND Research
Center
at
the California Pacific Medical Center
www.cpmc.org/services/als/about/default.html
Les Turner ALS
Organization
www.lesturnerals.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
www.mdausa.org
MDA – ALS
Division Website
MDA – ALS
Information, Articles, & Materials
MDA – “ALS
Newsletter”
MDA – “Quest”
Magazine
PALS
Have Hope
PALS / CALS – PERSONAL
WEB
SITES
www.geocities.com/sweekes99/ALS6.html
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
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
www.rideforlife.com
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