International Alliance of ALS/MND Associations
P.O. Box 246
Northampton NN1-2PR
United Kingdom
Tel: 44-1604-250505
Fax: 44-1604-638289  or  44-1604-624726

ALS Association – USA  (37 Chapters Total):
USA – National Office
ALS Association – General Chapter Information

ALS Association – Connecticut Chapter
ALS Association – Nation’s Capital Area Chapter (Serving DC, Maryland & Virginia)   OR
ALS Association – Northern New England Chapter (Serving Vermont, New Hampshire & Maine)
ALS Association – Massachusetts Chapter
ALS Association – New Jersey ALS Center
ALS Association – Greater New York Chapter (Serving Northern New Jersey & Greater New York City)
ALS Association – Upstate New York Chapter
ALS Association – Greater Philadelphia Chapter (Serving Delaware, Southern New Jersey & Philadelphia)   OR
ALS Association – Western Pennsylvania Chapter (Serving Western Pennsylvania & West Virginia)
ALS Association – Rhode Island Chapter

ALS Association – Florida Chapter
ALS Association – Georgia Chapter
ALS Association – Kentucky Chapter
ALS Association – North & South Carolina Chapter (The Jim “Catfish” Hunter Chapter)

ALS Association – Greater St. Louis Chapter (Serving Eastern Missouri, Central & Southern Illinois)   OR
ALS Association – Indiana Chapter
ALS Association – Midwest Chapter (“Keith Worthington Chapter”)
(Serving Kansas, Nebraska, and Western & Central Missouri)
ALS Association – Michigan Chapters
Western Michigan Chapter
Eastern Michigan Chapter (“ALS of Michigan, Inc.”)
ALS Association – Minnesota Chapter
ALS Association – Ohio Chapters
Western Ohio Chapter
Northeast Ohio Chapter
ALS Association – Southeast Wisconsin Chapter

ALS Association – Arizona Chapter
ALS Association – New Mexico Chapter
ALS Association – The Northeast Oklahoma ALS Support Group
ALS Association – Texas Chapters
North Texas Chapter
South Texas Chapter
Greater Houston Chapter

ALS Association – California Chapters
San Francisco Bay Area Chapter
Greater Los Angeles Chapter
Greater Sacramento Chapter
Orange County Chapter
Greater San Diego Chapter
ALS Association – Rocky Mountain Chapter (Colorado)
ALS Association – Nevada Chapter
ALS Association – The Oregon & Southwest Washington Chapter
ALS Association – Evergreen Chapter – (Serving Western Washington State)

ALS Recovery Foundation
Kevin Packman = Director and founder of the Foundation
555 NE 34th Street, Suite 1103
Miami, FL 33137
Phone: 1-305-573-0936

The Lou Gehrig's Disease Association (LGDA) of Southwest Florida, Inc.

NW Wisconsin ALS Support Group – Chippewa Falls, Wisconsin
Group leader: Sally Krohn
Phone: 1-715-723-1694

Down East ALS Support Group – Greenville, North Carolina

ALS of Utica
Committed to battling ALS in Utica, New York and the Upstate New York area.

Voice For Joanie (VFJ)
A group of volunteers in Western Connecticut providing computer technology and
assistance so that people with ALS have a “Voice”

Extra Hands for ALS – St. Louis, Missouri

The ALS/Patient Profile Research Project
Evelyn McDonald
P.O. Box 15981
Seattle, WA 98115 USA
Tel: 1-206-527-0437
Fax: 1-206-528-1120

The ALS Patient Care Database – ALS C.A.R.E. Project
The ALS C.A.R.E. (Clinical Assessment, Research and Education) Project invites health
Professionals to participate in creating a national database on ALS to collect clinical
information on disease progression, and diagnostic and treatment approaches and their outcomes.
The ALS C.A.R.E. Project is sponsored by an unrestricted grant from Aventis Pharma
and by a grant from the ALS Association
ALS C.A.R.E. is also endorsed by the ALS Interest Group of the World Federation of Neurology. OR

The European ALS Health Profile Study – University of Oxford
A Similar Study to the “The ALS Patient Care Database” - European version of Study

ALS-Dreamday in Netherlands, Germany and Belgium

Stichting ALS Centrum Nederland

Muscular Dystrophy Association (MDA) – USA National Headquarters

European Alliance of Neuromuscular Disorders Associations (EAMDA)

Muscular Dystrophy Campaign of UK

Muscular Dystrophy Association of Australia

Muscular Dystrophy Association of Canada

International Rare Disease Support Network (IRDSN)
A network Chain using mainly the Internet, between people or group of
isolated people directly or indirectly affected by the same rare disease.

Conditions and Diseases Web Site Links

“Taylor & Francis” Journals – ALS Quarterly Journal
ALS Quarterly Journal:

Demos Medical Publishing
Dedicated to publishing quality books for both health care professionals and individuals, caregivers and
family members affected by a range of Neurologic and related disorders.
          Publishers of the book entitled:
“Amyotrophic Lateral Sclerosis: A Guide For Patients and Families”- 2nd Edition
          Additional information about this book can be found at:

“ALS, MS and Our Toxic Environment” – By Mary E. Joyce
To order her book, contact Mary directly at:

ALS Related Societies:

The Primary Lateral Sclerosis (PLS) Web Site – by Frank Reyerse
PLS Awareness Website – by Jennifer Thomson

“Synapse” – A Newsletter for Primary Lateral Sclerosis (PLS) Patients & Caregivers
“Synapse” is free - Those wishing to subscribe can E-mail Mark Weber at:
Also – Review Mark’s Investigational Research on Dr. Helmut F. Prahl, Ph.D. At:

“Primary Lateral Sclerosis” (PLS) by Carmel Armon, M.D.
An excellent Article About PLS.

PLS Newsletter – Frank Levy Ph.D.
EDITOR – Frank Levy, Ph.D.
To Subscribe to the “PLS Newsletter”, Contact Frank Levy At:
101 Pinta Court
Los Gatos, CA 95030
Telephone: 1-408-356-8227

Kennedy's Disease Association
P.O. Box 2050
Simi Valley, CA 93062-2050
Phone:  1-805-577-9591

Kennedy's Disease Home Page – By Patrick Griffin

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