This section contains resources for ALS patients. Some information may be available only in certain geographic areas. You may also want to check out the Links page for links to patient resources on other websites.
International Alliance of ALS/MND Associations-
- The ALS Association (USA)
- 27001 Agoura Road
Suite 150
Calabasas Hills, CA 91301-5104 USA
Patients and Families Only: 1-800-782-4747
All Others: 818-880-9007
Fax: 818 880-9006
E-mail: alsinfo@alsa-national.org
Website: http://www.ALSA.org/
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- The Muscular Dystrophy Association (USA)
- 3300 East Sunrise Drive
Tucson, AZ 85718-3208, USA
Phone: 1-800-572-1717
E-mail: mda@mdausa.org .
Website: http://www.mdausa.org/
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- Les Turner ALS Foundation Ltd. (USA)
- Les Turner ALS Foundation
8142 North Lawndale Avenue
Skokie, IL 60076-3322
Phone: 847-679-3311
Toll free: 888-ALS-1107
Fax: 847-679-9109
Email: info@lesturnerals.org
Website: http://www.lesturnerals.org/
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- ALS Liga Belgie (Belgium)
- Homepage of the Belgium ALS Helpgroup. A site for people with Amyotrophic Lateral Sclerosis in Dutch and French.
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- ALS Society of Canada (Canada)
- Phone: 416-497-2267 or toll-free in Canada at 1-800-267-4ALS (4257)
E-mail: ip@als.ca
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- Muscular Dystrophy Association of Canada/Association Canadienne de la Dystrophie Musculaire (Canada)
- 2345 Yonge Street, Suite 900
Toronto, Ontario M4P 2E5
Phone: 416-488-0030 or 1-800-567-2873
Fax: 416-488-7523
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- ALS Society of British Columbia (Canada)
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- Scottish Motor Neurone Disease Association (UK)
- Scottish Motor Neurone Disease Association
76 Firhill Road, Glasgow. G20 7BA
Tel: 0141 945 1077
Fax: 0141 945 2578
E-mail: info@scotmnd.co.uk
Website: http://www.scotmnd.org.uk/
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- The Israeli ALS Research Association
- This website outlines the wide array of activities by the ISRALS Association. In addition to promoting fundraising events located in Israel, there are sections about ALS research, and an up-to-date collection of research internationally.
Website: http://www.israls.org/
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- BrainTalk ALS Community
- The Department of Neurology at Massachusetts General Hospital operates online patient support forums for a large number of neurological conditions, including ALS. The full list of conditions and other neurological subjects is found at http://www.braintalk.org. This service is not restricted and is open to all members of the public. To fully participate in the bulletin boards and chats, you will need to register; reading the bulletin boards can be done without registration.
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- ALSforums
- The ALSforums website provides a number of online forums where registered members can post messages for comment by other forum participants. Registration is free. The forums are intended to provide a community of support (not medical information), and they are moderated by volunteers. A number of topics are posted for discussion.
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- ALSA Manuals
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- What's it All About?
- Coping with Change
- Managing Your Symptoms and Treatment
- Functioning When Your Mobility Is Affected
- Adjusting to Swallowing and Speaking Difficulties
- Adapting to Breathing Changes
- For information on obtaining a copy of one, two, or a complete set of
Living With ALS: A Series of Manuals please see The ALS Association
Publications Order Form.
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- Amyotrophic Lateral Sclerosis - A 28-page, free informational booklet on ALS.
- From the Muscular Dystrophy Association
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- ALS 1996 and Beyond: New Hopes and Challenges. A Manual for Patients, Families and Friends. Third ("Year 2000") edition.
- By Carmel Armon, M.D.
- This manual can be viewed online at http://www.llu.edu/llumc/neurosciences/als/ (English) or http://www.llu.edu/llumc/neurosciences/als/spanish.html (Spanish),
or obtained (free of charge) by writing to:
- Carmel Armon, M.D.; Loma Linda University Department of Neurology; 11370 Anderson Street, Suite 2400; Loma Linda, CA 92354.
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- Tuesdays with Morrie: An Old man, a Young Man, and Life's Greatest Lesson
- By Mitch Albom. 1997. Doubleday ISBN 0385484518. Available in
hard cover; large print, and audiocassette (4 cassettes, 3 hours).
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- Letting Go: Morrie's Reflections on Living While Dying
- By Morrie Schwartz. 1996. Walker and Company, New York ISBN 0-8027-1315-7. $18 USD hardcover.
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- How Will They Know If I'm Dead?: Transcending Disability and Terminal Illness
- By Robert C. Horn, III. Published by Saint Lucie Press. Publication date: December 1, 1996. ISBN: 1574440713. Price: $12.95 (paperback).
- A first-person account of what it is like to live with ALS on a life support ventilator. Robert Horn is Professor Emeritus of Political Science at California State University, Northridge.
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- Lou Gehrig: The Luckiest Man
- By David A. Adler. Gulliver Books, Harcourt Brace ISBN: 0-15-200523-4
- A new nicely illustrated children's book about Lou Gehrig seems suitable to
help explain ALS to children.
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- In My Dreams...I Do!
- A children's book by Linda Saran, illustrated by Ilene Robinette. $12.95 (U.S.)/$14.95 (Canada and International). The price includes shipping and handling. To order, telephone (800) 266-3206 or download an order form at http://www.lesturnerals.org/booksvideos.htm or RAINBOWS.
- Inspired by the author's mother, Dena Chiodras Saran, this book describes how two sisters escape the world of their grandmother's physical limitations from ALS to the freedom of her dream realm where anything is possible. Note: All proceeds from the sale of this book will jointly benefit the Dena Chiodras Saran PALS Fund, affiliated with the Les Turner ALS Foundation, and RAINBOWS. For further information, contact the Les Turner ALS Foundation at info@lesturnerals.org.
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- Amyotrophic Lateral Sclerosis
- By Robert G. Miller, M.D., Deborah Gelinas, M.D. and Patricia O'Connor, RN
Table of contents and ordering information: http://www.demosmedpub.com/book169.html
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- Amyotrophic Lateral Sclerosis: A Comprehensive Guide to Management
- By Hiroshi Mitsumoto, M.D. and Forbes H. Norris, Jr., M.D., Editors
Demos Vermande Publications. $39.95 + $4 postage & handling (USD)
386 Park Avenue South, Suite 201, New York, NY 10016
Tel: 800-532-8663
Fax: 212-683-0118
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- Amyotrophic Lateral Sclerosis: Diagnosis and Management for the Clinician
- Edited by Jerry M. Belsh and Phillip L Schiffman. Futura Publishing Company, Armonk, NY. ISBN 0-87993-628-2.
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- Pride of the Yankees: The Lou Gehrig Story
- (1942) starring Gary Cooper.
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- A Brief History of Time - Paramount Pictures
- A film about genius and physicist Stephen Hawking, and his remarkable
accomplishments in the field of physics while living with ALS for 30 years. At
video rental stores.
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- What is ALS? ($15)
- From the ALS Association
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- With Strength & Courage
- A 22-minute film for newly diagnosed ALS patients telling about ALS,
how to cope, and what help is available.
From the Muscular Dystrophy Association
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- Ventilation: The Decision Making Process
- This 20-minute video is available for families and health professionals. The video is designed to present the issues people need to consider when determining whether mechanical ventilation is right for them. The video is loaned to patient families or available for sale for $20 from:
Les Turner ALS Foundation
8142 North Lawndale Avenue
Skokie, IL 60076-3322
Phone: 847-679-3311
Toll free: 888-ALS-1107
Fax: 847-679-9109
Email: info@lesturnerals.org
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- ALS Patient Support Group Visual Library
- Patients/caregivers may borrow tapes for up to two weeks.
TOPICS: Management of ALS, Home Care/Long Term
Care, Legal/Financial Issues, Research in ALS, Special Speakers, Speech and
Swallowing, Independent Living
Write to: Norris MDA/ALS Research Center
California Pacific Medical Center
2324 Sacramento Street, Suite 150
San Francisco, CA 94115
E-mail: Contact Giovanna Kushner at: giovanna@cooper.cpmc.org
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- ALS Connection Registry
- North American patients will be interested in this MDA funded, patient-driven website. The Registry collects data from ALS patients in North America, which is used for ongoing ALS research. The ALS Connection Registry is coordinated by The Forbes Norris MDA/ALS Research Center at California Pacific Medical Center and the San Francisco Coordinating Center.
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- The Therapeutics of ALS
- An article by Dr. Theodore L. Munsat, M.D.
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- Stephen Hawking's Home Page
- Contains an essay by the world-famous physicist on living with ALS, called Disability Concerns; and details about his computer assistance.
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- Primary Lateral Sclerosis Website
- This patient-oriented and operated website lists educational information, studies and other information about PLS and other motor neuron diseases and links to other sites.
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- MEDLINEplus
- MEDLINEplus will direct you to information to help answer health questions. MEDLINEplus brings together, by health topic, authoritative information from NLM, the National Institutes of Health (NIH), other government, non-profit and other health-related organizations. Preformulated MEDLINE searches are included in MEDLINEplus and give easy access to the medical research literature.
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- Clinical Trials Summary: from the NIH
- The U.S. National Institutes of Health, through its National Library of Medicine, has developed this cllinical trials sumamry to provide health professionals, patients, family members and members of the public current information about clinical research studies.
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