Amyotrophic Lateral Sclerosis (ALS) Information Page

Amyotrophic Lateral Sclerosis (ALS) Information Page

Amyotrophic Lateral Sclerosis (ALS) Information Page

What research is being done?

NIH High-Risk, High Reward Research Program on ALS

The National Institutes of Health is investing $25 million over 5 years in a new program to spur innovative research on ALS. The Accelerating Leading-edge Science in ALS (ALS2) aims to answer critical questions about this disease. ALS2 will be part of the NIH Common Fund’s High-Risk, High-Reward (HRHR) research program, through its Transformative Research Award initiative. ALS2 will take a three-pronged approach to improve understanding of ALS:

  • Adapt emerging tools and technologies from neuroscience and cell biology to identify what causes ALS at the molecular level, and how the disease progresses, leading to new therapeutic strategies.
  • Attract new talent from a range of scientific disciplines, including neuroscience, cell biology, bioengineering, genomics, chemistry, biophysics, environmental health sciences, and computational science.
  • Examine biological similarities between ALS and motor neuron disease in other neurodegenerative disorders, including frontotemporal dementia, chronic traumatic encephalopathy, Kennedy’s disease, spinal muscular atrophy, and primary lateral sclerosis.

For more information, please visit:  NIH Common Fund High-Risk, High-Reward Research Program

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 MedlinePlus
Amyotrophic Lateral Sclerosis

×
What research is being done?

NIH High-Risk, High Reward Research Program on ALS

The National Institutes of Health is investing $25 million over 5 years in a new program to spur innovative research on ALS. The Accelerating Leading-edge Science in ALS (ALS2) aims to answer critical questions about this disease. ALS2 will be part of the NIH Common Fund’s High-Risk, High-Reward (HRHR) research program, through its Transformative Research Award initiative. ALS2 will take a three-pronged approach to improve understanding of ALS:

  • Adapt emerging tools and technologies from neuroscience and cell biology to identify what causes ALS at the molecular level, and how the disease progresses, leading to new therapeutic strategies.
  • Attract new talent from a range of scientific disciplines, including neuroscience, cell biology, bioengineering, genomics, chemistry, biophysics, environmental health sciences, and computational science.
  • Examine biological similarities between ALS and motor neuron disease in other neurodegenerative disorders, including frontotemporal dementia, chronic traumatic encephalopathy, Kennedy’s disease, spinal muscular atrophy, and primary lateral sclerosis.

For more information, please visit:  NIH Common Fund High-Risk, High-Reward Research Program

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 MedlinePlus
Amyotrophic Lateral Sclerosis

NIH High-Risk, High Reward Research Program on ALS

The National Institutes of Health is investing $25 million over 5 years in a new program to spur innovative research on ALS. The Accelerating Leading-edge Science in ALS (ALS2) aims to answer critical questions about this disease. ALS2 will be part of the NIH Common Fund’s High-Risk, High-Reward (HRHR) research program, through its Transformative Research Award initiative. ALS2 will take a three-pronged approach to improve understanding of ALS:

  • Adapt emerging tools and technologies from neuroscience and cell biology to identify what causes ALS at the molecular level, and how the disease progresses, leading to new therapeutic strategies.
  • Attract new talent from a range of scientific disciplines, including neuroscience, cell biology, bioengineering, genomics, chemistry, biophysics, environmental health sciences, and computational science.
  • Examine biological similarities between ALS and motor neuron disease in other neurodegenerative disorders, including frontotemporal dementia, chronic traumatic encephalopathy, Kennedy’s disease, spinal muscular atrophy, and primary lateral sclerosis.

For more information, please visit:  NIH Common Fund High-Risk, High-Reward Research Program

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 MedlinePlus
Amyotrophic Lateral Sclerosis


Definition
Definition
Treatment
Treatment
Prognosis
Prognosis
Clinical Trials
Clinical Trials
Organizations
Organizations
Publications
Publications
Definition
Definition

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.  

×
Definition

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.  

Treatment
Treatment

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).  

×
Treatment

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).  

Definition
Definition

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.  

Treatment
Treatment

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).  

Prognosis
Prognosis

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.

x

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.

Prognosis
Prognosis

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.

Definition

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.  

Treatment

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).  

Prognosis

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.

What research is being done?

NIH High-Risk, High Reward Research Program on ALS

The National Institutes of Health is investing $25 million over 5 years in a new program to spur innovative research on ALS. The Accelerating Leading-edge Science in ALS (ALS2) aims to answer critical questions about this disease. ALS2 will be part of the NIH Common Fund’s High-Risk, High-Reward (HRHR) research program, through its Transformative Research Award initiative. ALS2 will take a three-pronged approach to improve understanding of ALS:

  • Adapt emerging tools and technologies from neuroscience and cell biology to identify what causes ALS at the molecular level, and how the disease progresses, leading to new therapeutic strategies.
  • Attract new talent from a range of scientific disciplines, including neuroscience, cell biology, bioengineering, genomics, chemistry, biophysics, environmental health sciences, and computational science.
  • Examine biological similarities between ALS and motor neuron disease in other neurodegenerative disorders, including frontotemporal dementia, chronic traumatic encephalopathy, Kennedy’s disease, spinal muscular atrophy, and primary lateral sclerosis.

For more information, please visit:  NIH Common Fund High-Risk, High-Reward Research Program

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 MedlinePlus
Amyotrophic Lateral Sclerosis

Patient Organizations
ALS Association
275 K Street, N.W.
Suite 250
Washington
DC
Washington, DC 20005
Tel: 202-407-8580
ALS Therapy Development Institute
300 Technology Square
Suite 400
Cambridge
MA
Cambridge, MA 02139
Tel: 617-441-7200
Les Turner ALS Foundation
5550 West Touhy Avenue
Suite 302
Skokie
IL
Skokie, IL 60077-3254
Tel: 847-679-3311
Muscular Dystrophy Association
National Office - 222 S. Riverside Plaza
161 N. Clark, Suite 3550
Chicago
IL
Chicago, IL 60601
Tel: 800-572-1717
National ALS Registry
4770 Buford Hwy NE
Atlanta
GA
Atlanta, GA 30341
Tel: 800-232-4636
Project ALS
801 Riverside Drive, Suite 6G
Suite 420
New York
NY
New York, NY 10032
Tel: 212-420-7382; 855-900-2257
Publications

Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's disease) Brochure compiled by the National Institute of Neurological Disorders and Stroke (NINDS).

Patient Organizations