Skip to Content

View Additional Content In This Section

Amyotrophic Lateral Sclerosis

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Amyotrophic Lateral Sclerosis is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • ALS
  • Amyotrophic Lateral Sclerosis-Polyglucosan Bodies
  • Aran-Duchenne Muscular Atrophy
  • Gehrig's Disease
  • Lou Gehrig's Disease
  • Motor System Disease (Focal and Slow)

Disorder Subdivisions

  • Spinal Muscular Atrophy, Type ALS
  • Juvenile Spinal Muscular Atrophy, Included
  • Progressive Bulbar Palsy, Included
  • Benign Focal Amyotrophy of ALS
  • Upper Motor Neuron Disease
  • Werdnig-Hoffman Disease
  • Wohlfart-Disease
  • Primary Lateral Sclerosis
  • Infantile Spinal Muscular Atrophy, ALS
  • Kugelberg-Welander Disease

General Discussion

Amyotrophic lateral sclerosis (ALS) is one of a group of disorders known as motor neuron diseases. It is characterized by the progressive degeneration and eventual death of nerve cells (motor neurons) in the brain, brainstem and spinal cord that facilitate communication between the nervous system and voluntary muscles of the body. Ordinarily, motor neurons in the brain (upper motor neurons) sent messages to motor neurons in the spinal cord (lower motor neurons) and then to various muscles. ALS affects both the upper and lower motor neurons, so that the transmission of messages is interrupted, and muscles gradually weaken and waste away. As a result, the ability to initiate and control voluntary movement is lost. Ultimately, ALS leads to respiratory failure because affected individuals lose the ability to control muscles in the chest and diaphragm. ALS is often called Lou Gehrig's disease.

Resources

Amyotrophic Lateral Sclerosis Association
27001 Agoura Road
Suite 250
Calabasas Hills, CA 91301-5104
USA
Tel: (818)880-9007
Fax: (818)880-9006
Tel: (800)782-4747
TDD: (818)593-3540
Email: als@alsa-national.org
Internet: http://www.alsa.org

Families of Spinal Muscular Atrophy
925 Busse Road
Elk Grove Village, IL 60007
Tel: (847)367-7620
Tel: (800)886-1762
Email: sma@fsma.org
Internet: http://www.fsma.org/

Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ 85718-3208
USA
Tel: (520)529-2000
Fax: (520)529-5300
Tel: (800)572-1717
Email: mda@mdausa.org
Internet: http://www.mda.org/

NIH/National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981
Internet: http://www.ninds.nih.gov/

Les Turner Amyotrophic Lateral Sclerosis Foundation, Ltd.
5550 W. Touhy Avenue,
Suite 302
Skokie, IL 60077-3254
Tel: (847)679-3311
Fax: (847)679-9109
Tel: (888)257-1107
Email: info@lesturnerals.org
Internet: http://www.lesturnerals.org

ALS Society of Canada
3000 Steeles Avenue East, Suite 200
Markham
Ontario, L3R 4T9
Canada
Tel: 9052482052
Fax: 9052482019
Tel: 8002674257
Internet: http://www.als.ca/en and http://alsont.ca/

MND Scotland
76 Firhill Rd
Glasgow, G20 7BA
Scotland
Tel: 01419451077
Fax: 01419452578
Email: info@mndscotland.org.uk
Internet: http://www.mndscotland.org.uk/

Spastic Paraplegia Foundation
5305 Miramar Ln
Colleyville, TX 76034
USA
Tel: (877)773-4483
Email: information@sp-foundation.org
Internet: http://sp-foundation.org

International Alliance of ALS/MND Associations
P.O. Box 246
Northampton, NN1 2PR
United Kingdom
Tel: 441604611821
Fax: 441604624726
Email: alliance@alsmndalliance.org
Internet: http://www.alsmndalliance.org

ALS Therapy Development Institute
300 Technology Sq, Suite 400
Cambridge, MA 02139
USA
Tel: (617)441-7200
Fax: (617)441-7299
Email: info@als.net
Internet: http://www.als.net

Christopher & Dana Reeve Foundation
636 Morris Turnpike, Suite 3A
Short Hills, NJ 07078
USA
Tel: (973)379-2690
Fax: (973)912-9433
Tel: (800)225-0292
Email: prc@ChristopherReeve.org
Internet: http://www.christopherreeve.org

New Horizons Un-Limited, Inc.
811 East Wisconsin Ave
P.O. Box 510034
Milwaukee, WI 53203
USA
Tel: (414)299-0124
Fax: (414)347-1977
Email: horizons@new-horizons.org
Internet: http://www.new-horizons.org

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Internet: http://rarediseases.info.nih.gov/GARD/

UCSF Memory and Aging Center
350 Parnassus Avenue
Suite 905
San Francisco, CA 94117
Tel: (415)476-6880
Fax: (415)476-4800
Email: mgeschwind@memory.ucsf.edu
Internet: http://www.memory.ucsf.edu

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  9/29/2008
Copyright  1986, 1987, 1989, 1990, 1991, 1992, 1993, 1994, 1995, 1996, 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 National Organization for Rare Disorders, Inc.

This information does not replace the advice of a doctor. Healthwise, Incorporated disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use. How this information was developed to help you make better health decisions.

Healthwise, Healthwise for every health decision, and the Healthwise logo are trademarks of Healthwise, Incorporated.

2650 Siskiyou Blvd., Medford, OR 97504

541-789-7000