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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 MyD-H, the Dartmouth-Hitchcock patient portal. You must be a registered MyD-H user for the Lebanon, Manchester, or Nashua locations to access this site.

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

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