¿Quién contrae ELA?

ALS is a disorder that affects the function of nerves and muscles. Based on U.S. population studies, a little over 5,600 people in the U.S. are diagnosed with ALS each year. (That's 15 new cases a day.) It is estimated that as many as 30,000 Americans have the disease at any given time.

Every 90 minutes, someone is diagnosed with the disease, and someone passes away from it.

Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in people in their twenties and thirties.

ALS is 20% more common in men than women. However, with increasing age, the incidence of ALS is more equal between men and women.

About 90% of ALS cases occur without any known family history or genetic cause. The remaining 10% of ALS cases are inherited through a mutated gene with a known connection to the disease.

For unknown reasons, military veterans are more likely to be diagnosed with the disease than the general public.

Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to ten percent will live more than ten years.

There is some evidence that people with ALS are living longer, at least partially due to clinical management interventions, riluzole and possibly other compounds and drugs under investigation.

Notable individuals who have been diagnosed with ALS include:

    • Baseball great Lou Gehrig
    • Theoretical physicist, cosmologist and author Stephen Hawking
    • NFL Legend Dwight Clark
    • Power publicist Nanci Ryder
    • Pilates guru Mari Winsor
    • Singer/songwriter Kim Shattuck (The Muffs)
    • "SpongeBob SquarePants" creator Stephen Hillenburg
    • Hall of Fame pitcher Jim "Catfish" Hunter
    • U.S. Senator Jacob Javits
    • Actor David Niven
    • "Sesame Street" creator Jon Stone
    • Jazz musician Charles Mingus
    • Bassist Mike Porcaro (Toto)
    • Musician Huddie Ledbetter (Lead Belly)
    • Theatre producer Jenifer Estess
    • Boxing champion Ezzard Charles
    • NBA Hall of Fame basketball player George Yardley
    • Golf caddie Bruce Edwards
    • Photographer Eddie Adams
    • Entertainer Dennis Day
    • Former U.S. Vice President Henry A. Wallace
    • U.S. Army General Maxwell Taylor
    • NFL football player Steve Gleason
    • NFL football player O.J. Brigance
    • NFL football player Tim Shaw

5600

People are diagnosed each year

90%

Of cases have no genetic cause 

40-70

Age range most people develop ALS

Facts You Should Know

  • ALS is not contagious.
  • Currently, no cure for ALS exists.
  • Although the life expectancy of a person with ALS averages about two to five years from the time of diagnosis, the disease is variable. Many people can live with the disease for five years or longer. In fact, more than half of all people with ALS live more than three years after diagnosis.
  • Once ALS starts, it almost always progresses, eventually taking away the ability to walk, dress, write, speak, swallow, and breathe, and shortening the life span. How fast and in what order this occurs is very different from person to person. While the average survival time is three years, about 20 percent of people with ALS live five years, 10 percent will survive 10 years and 5 percent will live 20 years or longer.
  • Progression is not always a straight line in an individual. It is not uncommon to have periods lasting weeks to months where there is very little or no loss of function. There are even very rare examples in which there is significant improvement and recovery of lost function. These ALS "arrests" and "reversals" are, unfortunately, usually transient. Less than 1 percent of people with ALS will have significant improvement in function lasting 12 months or longer.
  • On average, it takes about one year before a final ALS diagnosis is made.
  • ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. The disease can affect anyone.
  • The onset of ALS often involves muscle weakness or stiffness as early symptoms. Progression of weakness, wasting, and paralysis of the muscles of the limbs and trunk, as well as those that control vital functions such as speech, swallowing, and breathing, generally follows.
  • There can be significant costs for medical care, equipment, and home health care later in the disease. It is important to be knowledgeable about your health plan coverage and other programs for which you may be eligible, including Social Security Disability Insurance (SSDI), Medicare, Medicaid, and Veteran Affairs (VA) benefits. Only five drugs are currently FDA-approved to treat ALS: Relyvrio, Riluzole, Nuedexta, Radicava, and Tiglutik. Nuedexta is approved to treat pseudobulbar affect, difficulty with emotional control, including inappropriate laughing and crying, which impacts some people with ALS.
  • The estimated cost to develop a drug to slow or stop the progression of ALS is between $2 billion and $3 billion from an idea to an approved drug.