Who Gets ALS?

The short answer is that anyone can be diagnosed with the disease, regardless of age, gender, nationality, or ethnicity, although it is primarily an adult-onset disease. 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. It is estimated that as many as 30,000 Americans have the disease at any given time.

By The Numbers:

  • 90 - Every ninety minutes, someone is diagnosed with the disease, and someone passes away from it.
  • 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.
  • 55 is the average age of onset with most people who develop ALS between the ages of 40 and 70. However, cases of the disease do occur in people in their twenties and thirties.
  • 50% 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.
  • 20% - ALS is twenty percent more common in men than women. However, with increasing age, the incidence of ALS is more equal between men and women.
  • 2X - Military veterans are twice as likely to be diagnosed with the disease than the general public for yet unknown reasons.

Notable individuals who have been diagnosed with ALS include:

  • Baseball great Lou Gehrig
  • Theoretical physicist, cosmologist, and author Stephen Hawking
  • Hall of Fame pitcher Jim "Catfish" Hunter
  • U.S. New York Senator Jacob Javits
  • Actor David Niven
  • Actor & singer Rebecca Luker
  • Actor & playwright Sam Shepard
  • "SpongeBob SquarePants" creator Stephen Hillenburg
  • “Sesame Street” creator Jon Stone
  • Jazz musician Charles Mingus
  • Singer/songwriter Kim Shattuck (The Muffs)
  • Bassist Mike Porcaro (Toto)
  • Zac Brown Band's John Driskell Hopkins
  • 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
  • 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
  • NHL Borje Salming
  • Singer and songwriter Roberta Flack

5600

People are diagnosed each year

90%

Of cases have no genetic cause 

40-70

Age range most people develop ALS