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Amyotrophic Lateral Sclerosis (ALS)


Amyotrophic lateral sclerosis (ALS) is a rapidly progressive, fatal disease that affects the nerve cells (neurons) in that brain and spinal cord that  control voluntary muscle movement.  Our voluntary muscles produce movements like walking, breathing, chewing, and talking.  Nerve cells called motor neurons--that connect from the brain and spinal cord to the rest of the body--begin to degenerate and die, and stop sending messages to muscles. The muscles gradually weaken, waste away, and twitch, and the brain can't start and control voluntary movement.  Symptoms are usually first noticed in the arms and hands, legs, or swallowing muscles.  People with ALS lose their strength and become unable to move their arms and legs, and to hold the body upright.  Some individuals eventually can't breathe on their own.  Although ALS doesn't usually impair a person's mind or personality, several recent studies suggest that some people with ALS may develop cognitive problems involving word fluency, decision-making, and memory.  Most cases of ALS happen with no known cause, while a small percentage of cases are inherited.  


No cure has yet been found for ALS. However, the drugs riluzole and edaravone have approved by the Food and Drug Administration (FDA) to treat ALS. Riluzole prolongs life by 2-3 months but does not relieve symptoms. Edaravone can slow the clinical decline in daily functioning  of people with ALS. The FDA has also approved the NeuRx Diaphragm Pacing System, which uses implanted electrodes and a battery pack to cause the diaphragm (breathing muscle) to contract, to help certain individuals who have ALS before the onset of severe respiratory failure. Other treatments are desig ned to relieve symptoms and improve the quality of life for people with ALS.  Drugs are available to help individuals with spasticity, pain, panic attacks, and depression.  Physical therapy, occupational therapy, and rehabilitation may help to prevent joint immobility and slow muscle weakness and atrophy.  Individuals with ALS may eventually consider forms of mechanical ventilation (respirators).  


Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses.  Individuals have increasing problems with moving, swallowing, and speaking or forming words.  Eventually people with ALS will not be able to stand or walk, get in or out of bed on their own, or use their hands and arms. In later stages of the disease, individuals have difficulty breathing as the muscles of the respiratory system weaken. Although ventilation support can ease problems with breathing and prolong survival, it does not affect the progression of ALS. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those individuals with ALS survive for 10 or more years.


NINDS researchers hope to understand the mechanisms that trigger motor neurons to degenerate in ALS, and to find effective approaches to halt the progression leading to cell death.  Different models of the disease are helping scientists study gene mutations and cellular defects in ALS.  NINDS-funded research studies are also looking into how ALS symptoms change over time in people with certain gene mutations.  Other scientists hope to develop biological measures (called biomarkers) that can help to identify the rate of progression of the ALS or the effectiveness of a therapeutic approach. Information from the National Library of Medicine’s MedlinePlusAmyotrophic Lateral Sclerosis

ALS Association

1275 K Street, N.W.
Suite 250
Washington, DC 20005

Website: http://www.alsa.org
Phone: 202-407-8580
Fax: 202-289-6801

Nonprofit voluntary health organization dedicated to the fight against amyotrophic lateral sclerosis. Funds global research and sponsors advocacy programs, a network of chapters, and certified centers and clinics located nationwide.

ALS Therapy Development Institute

300 Technology Square
Suite 400
Cambridge, MA 02139

Website: http://www.als.net
Phone: 617-441-7200
Fax: 617-441-7299

Founded in 1999, the ALS Therapy Development Foundation is dedicated to discovering and developing treatments for ALS. The organization, which focuses on a concentrated drug discovery program for ALS, has collaborated with 28 for-profit companies and academic researchers to perform advanced investigations.

Les Turner ALS Foundation

5550 West Touhy Avenue
Suite 302
Skokie, IL 60077-3254

Website: http://lesturnerals.org/
Phone: 847-679-3311
Fax: 847-679-9109

Supports medical research, patient services, and promotes awareness and education to find the cause(s), effective treatments, and ultimately, a cure for amyotrophic lateral sclerosis.

National ALS Registry

4770 Buford Hwy NE
Atlanta, GA 30341

Website: https://www.cdc.gov/als/Default.html
Phone: 800-232-4636

The National ALS Registry is a program to collect, manage, and analyze data about people with ALS in the United States. Developed by the Center for Disease Control and Prevention’s Agency for Toxic Substances and Disease Registry (ATSDR), this registry establishes information about the number of ALS cases, collects demographic, occupational and environmental exposure data from people with ALS to learn about potential risk factors for the disease, and notifies participants about research opportunities. The Registry includes data from national databases as well as de-identified information provided by individuals with ALS. All information is kept confidential. People with ALS can add their information to the Registry by visiting www.cdc.gov/als.

Project ALS

801 Riverside Drive, Suite 6G
Suite 420
New York, NY 10032

Website: http://www.projectals.org
Phone: 212-420-7382; 855-900-2257
Fax: 212-420-7387

Not-for-profit organization that raises awareness and significant funds toward effective treatments and a cure for ALS, also known as Lou Gehrig’s disease.

Information sourced through CNF’s partnership with The National Institute of Neurological Disorders and Stroke (NINDS), US National Institutes of Health.