ALS Facts
ALS Facts

54 Interesting Facts about ALS

Jill Bartholomew
By Jill Bartholomew, Junior Writer
Published February 19, 2017
  • Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressing and always fatal neurological disease that attacks the nerve cells responsible for controlling voluntary muscles.[15]
  • Most people who develop ALS are between the ages of 40 and 75, with the majority showing symptoms after age 60. The disease can occur at a younger age too, although the incidence in children and teenagers is very rare.[4]
  • ALS does not impair an individual’s sexual drive.[4]
  • ALS is one of the most common neurodegenerative diseases worldwide.[5]
  • ALS is more common among white males, non-Hispanics, and persons aged 60–69.[5]
  • It is estimated that at any given time, 1 to 7 out of every 100,000 people will have ALS.[12]
  • There are 15 new cases of ALS diagnosed each day.[18]
  • ALS occurs throughout the world with no obvious racial, ethnic, or socioeconomic boundaries.[4]
    • Interesting Lou Gehrig Disease Facts
    Every 90 minutes, someone in the U.S. is diagnosed with ALS
  • Every 90 minutes someone in the U.S. is diagnosed with ALS.[14]
  • It can take a year or more to get a confirmed diagnosis of ALS.[14]
  • Studies of military personnel who were deployed in the Gulf region during the 1991 war show that those veterans were more likely to develop ALS compared to military personnel who were not in that region.[5]
  • There are more than 150 potential treatments being looked at in the U.S. today for ALS.[14]
  • The term “amyotrophic lateral sclerosis” comes from Greek. “Amyotrophic” means wasting or thinning of the muscle, or atrophy. “Lateral” refers to the location of the nerve cells that deteriorate in the spinal cord, on its far edge. When these nerve cells die, they leave a scar in the spinal cord that is referred to as “sclerosis.”[11]
  • Genetic studies show us that ALS is probably not a single disease but a combination of several related diseases with a similar end result.[9]
  • Eighty five percent of people with a motor neuron disease have ALS.[13]
  • Most surveys show that ALS is more common in men than women by a ratio of 3:2, although the gap may be closing. Men also tend to develop the disease at a younger age than women do.[11]
  • ALS is not necessarily hereditary and is not contagious. The incidence is roughly 2 people per 100,000 per year.[4]
  • Science has yet to devise a single test to definitely diagnose ALS.[14]
    • Interesting Stephen Hawking Fact
    Stephen Hawking has defied scientific odds by living with ALS for more than 40 years
  • Stephen Hawking has defied scientific odds by living with ALS for more than 40 years, a world record. Hawking was first diagnosed with ALS at age 21 and was told he would not live to see his 25th birthday. He is still alive at the age of 64. He has been called “The World’s Greatest Living Scientist” and the World’s Most Intelligent Man.”[6]
  • More than 12,000 people in the U.S. have a definitive diagnosis of ALS, which means there are 3.9 cases per 100,000 persons in the general population.[5]
  • In the United States, as many as 20,000 to 30,000 people have ALS and about 5,000 people are diagnosed with the disease each year.[13]
  • While individuals with ALS lose their strength and ability to move their arms, legs, and bodies—and, eventually, the ability to breathe without a ventilator—the disease does not affect their ability to see, taste, hear, or recognize touch, and it usually does not impair their ability to think or reason.[15]
  • Smoking and exposure to second-hand smoke may be a risk factor in developing ALS, and smoking-related ALS impacts a relatively large percentage of the U.S. population.[8]
  • Most people with ALS die from respiratory failure, usually within 3 to 5 years of onset of symptoms. About 50% of ALS patients live at least 2 years after diagnosis, 20% live 5 years or more, and up to 10% survive more than 10 years.[15]
  • The cause of sporadic ALS remains a mystery to this day. Science cannot explain how the illness begins in the body.[4]
  • Some common symptoms of ALS are twitching and cramping of muscles, especially in the hands and feet, and loss of motor control in the hands and arms—as well as impaired use of arms and legs, weakness and fatigue, tripping and falling, dropping things, uncontrollable periods of laughing and crying, and slurred or thick speech.[4]
  • Mutations in about a dozen genes have been found to cause familial ALS.[5]
  • Researchers have developed models of ALS to study in a variety of animal species, including fruit flies, zebrafish, and rodents.[5]
  • In 90%–95% of ALS cases, the disease occurs apparently at random with no associated risk factors. This is considered sporadic ALS. These people do not have a family history of ALS, and their family members are not at risk of developing ALS.[5]
    • Random ALS Facts
    In 90%–95% of ALS cases, the disease occurs apparently at random with no associated risk factors
  • The biggest breakthrough so far in the field of ALS research is the discovery of a gene that is linked to the onset of the disease. This gene makes a specific protein called superoxide dismutase 1 (SOD-1), whose function it is to clean cell metabolism waste products known as free radicals.[11]
  • Some researchers believe that in the case with people with ALS, their immune systems have become overactive and misdirected, resulting in inflammation that has been shown to damage motor neurons.[11]
  • There was an increased frequency of an unusual kind of ALS among a group of Italian soccer players. Doctors speculate that this happened because of a mix between genetics and other external factors such as drugs and herbicides.[8]
  • There are malignant forms of ALS in which the affected person may die less than a year after onset, and there are also a few cases of ALS where the patients have completely recovered, although these are extremely rare.[11]
  • Over 1.2 million people have participated in the ALS Ice Bucket Challenge, where they have a bucket of ice water dumped over their head and then donate $100 to ALS research to raise awareness of the disease. Since July 29, 2014, the ALS Association national office reported collecting US$13.3 million in donations and counting in 2014.[1]
    • Ice Bucket Challenge Fact
    Over 1.2 million people have participated in the ALS Ice Bucket Challenge to raise awareness and raise money for research to cure the disease
  • Conditions that can mimic ALS include cervical spine disease, spinal muscular atrophy (Kennedy’s disease), radiation damage, Syringomyelia (fluid in the spinal sac), hyperthyroidism and hyperparathyroidism, lead or mercury intoxication, lymphomas or Hodgkin’s disease (forms of cancer), hexosaminidase deficiency (an enzyme important in nerve cell metabolism), Lyme’s disease, syphilis, HIV-AIDS, and post-polio syndrome, which can occur 25 to 40 years after the original polio attack.[11]
  • Today approximately 500 annual publications on ALS are published annually in referenced journals, and these do not include oral and poster presentations at scientific and professional conferences.[12]
  • A few countries—including Mexico, Poland, and Italy—report lower-than-average rates of ALS.[12]
  • Former Boston college baseball player Pete Frates started the Ice Bucket Challenge in 2014 at age 29. He was diagnosed with ALS in 2012.[7]
  • ALS is also called Lou Gehrig’s disease, after the New York Yankee first baseman who was diagnosed with the disease at age 36. His record for the most consecutive baseball games played by any baseball player stood for 60 years, earning him the nickname the “Iron Man.” His famous quote from his retirement speech on the ballfield in 1939, “I am the luckiest man alive,” is still regarded as a study in heroism.[11]
    • Random Lou Gehrig’s Disease Fact
    ALS is also called Lou Gehrig’s disease, after the legendary New York Yankees’ first baseman who was diagnosed with the disease at age 36
  • In Mitch Albom’s award-winning novel Tuesdays with Morrie, he details the last years of a life of a patient with ALS. It was a bestseller for more than 4 years and made into a film starring actor Jack Lemmon.[12]
  • Since 1985, Stephen Hawking has had to speak through a trademarked computer system, which he operates with his chair. The computer’s “voice” has an American accent, while Hawking is British.[10]
  • The first descriptions of ALS appeared in French and British medical literature as early as the 1830s. One of the earliest cases of classic ALS was reported in detail in 1835. The patient was Prosper Lecomte, a 30-year-old circus owner, whose problems began in September 1848 with weakness in the right hand. She died on February 12, 1853, at the age of 35, 4½ years after the onset of her first symptom.[12]
  • In the first half of the 20th century, there were exceptional clusters of ALS outbreaks—50 to 100 times higher than normal—on the island of Guam and in the Western Pacific on Japan’s Honshu Island and the Marianas and West New Guinea.[12]
  • Lou Gehrig, after whom ALS is named, was voted the greatest first baseman of all time by the Baseball Writers’ Association in 1969 and was the leading vote getter for the Major League Baseball All-Century Team, chosen by fans, in 1999.[3]
    • “I might have been given a bad break, but I’ve got an awful lot to live for.”

    - Lou Gehrig

  • Ethel Kennedy, Justin Bieber, LeBron James, and “Weird” Al Yankovic all challenged President Barack Obama to take the ALS Ice Bucket Challenge in 2014. He declined to record himself taking the challenge, but he did donate $100 to the ALS Association.[1]
  • In the UK and Australia, ALS is referred to as Motor Neuron Disease (MND). In France, it is called Maladie de Charcot, after the French doctor Jean-Martin Charcot who first discovered the illness in 1869 and is considered the “Father of Modern Neurology.”[12]
  • The popularity of the ALS Ice Bucket Challenge is said to be due to three factors: doing good feels good, it’s fun and easy, and it is social-media friendly. LeBron James, Taylor Swift, Justin Timberlake, Jimmy Fallon, and Governor Chris Cristie are among the celebrities who have taken the Challenge.[16]
  • The most viral video, with over 5 million hits, of a celebrity taking the ALS Ice Bucket Challenge belongs to Bill Gates, the CEO and founder of Microsoft.[16]
  • Lou Gehrig was, at the time, one of the few active baseball players to be voted into the Hall of Fame in December 1939, before his death from ALS in June 1941. Baseball writers had to meet especially to waive the 1-year retirement requirement.[17]
  • Chinese premier and the author of the Great Cultural Revolution, Mao Tse-Tung (Chairman Mao), died of ALS on September 9, 1976, at the age of 82. Other well-known people who have had ALS include British actor David Niven, Russian composer Dmitri Shostakovich, and jazz musician Charles Mingus.[2]
    • Little Known ALS Fact
    ALS has no known cure, but one drug Riluzole has been shown to slow the progression of the disease and prolong life for several months
  • No cure has been found yet for ALS. However, the Food and Drug Administration (FDA) has approved one drug called Riluzole, which is believed to slow the progression of ALS and extend life for several months.[15]
  • Perhaps the most unusual treatment for ALS over the past 100 years has been vitamin E injections because it was thought ALS was the result of a deficiency. As early as the 1920s, medical literature show doctors were injecting ALS patients daily with vitamin E. Lou Gehrig, the legendary New York Yankee first baseman after whom the disease is named, received daily injections.[12]
  • The month of May has been established in the United States as the month where those living with ALS are recognized.[8][14]
  • More than 1.2 million videos were shared on Facebook in 2014 alone of people taking the ALS Ice Bucket Challenge, and the challenge has been mentioned on Twitter more than 2.2 million times since July 29, 2014.[16]
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