Quick Facts
about ALS

ALS (amyotrophic lateral sclerosis) is a fatal neuromuscular disease characterized by muscle weakness and a progressive wasting and paralysis of the muscles.

ALS is also known as Lou Gehrig’s Disease, after the Yankee baseball legend who died from the disease in 1941.

ALS destroys motor neurons, which are among the largest of all nerve cells in the brain and spinal cord. Motor neurons are responsible for sending messages to muscles throughout the body.

As motor neurons are destroyed, muscles weaken and lose their ability to move. Eventually, most muscles are affected, including those of the legs, feet, arms and hands, and those that control swallowing and breathing.

ALS can strike anyone, of any race or ethnic background, at any age. Approximately 80% of cases begin between 40-70 years of age.

The life expectancy of an ALS patient averages 2 to 5 years.

ALS is not a rare disease. Of the U.S. population living today, over 300,000 Americans will die from ALS.

What is Amyotrophic Lateral Sclerosis?

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles.  In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away, and twitch. Eventually the ability of the brain to start and control voluntary movement is lost.  Individuals with ALS lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, individuals lose the ability to breathe without ventilatory support.  In most cases the disease does not impair a person's mind, personality, intelligence, or memory, nor does it affect a person's ability to see, smell, taste, hear, or recognize touch.  A small percentage of patients may experience problems with memory or decision-making, and there is growing evidence that some may even develop a form of dementia.  The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others.

Is there any treatment?

No cure has yet been found for ALS. However, the FDA has approved the first drug treatment for the disease—riluzole.  Riluzole is believed to reduce damage to motor neurons and prolongs survival by several months, mainly in those with difficulty swallowing.  Other treatments are designed to relieve symptoms and improve the quality of life for people with ALS.  Drugs also are available to help individuals with pain, depression, sleep disturbances, and constipation.  Individuals with ALS may eventually consider forms of mechanical ventilation (respirators).

What is the 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?

Since it’s founding, in 1998, Project A.L.S., Inc. has raised over $23 million. Over 83% of the money they raise goes directly to funding for historic research programs. Current cutting-edge projects include:

• Gene Chip Discovery
• Accelerated Drug Testing
• Neural Stem Cell Replacement

Project A.L.S., Inc. has assembled a dream team of leading doctors and researchers from around the world who are committed to the goal of bringing swift and responsible science to the fight against ALS.

In only a few short years, this unprecedented collaboration has produced historic breakthroughs into our understanding of ALS. If successful, their current research will make a difference to those living with ALS as well as related neurological disorders such as Alzheimer’s, Parkinson’s, Multiple Sclerosis and spinal cord injuries.

Partners with Project A.L.S., Inc. include scientists at Yale University, Cornell University, The Salk Institute, Harvard Medical School, Johns Hopkins University, the Howard Hughes Medical Institute at Columbia University and the University of California, San Francisco among others.