40 Fun Facts About ALS (Amyotrophic Lateral Sclerosis)

Which New York Yankees first baseman, who retired in 1939, gave ALS its common American name?

Lou Gehrig played 2,130 consecutive games before unexplained weakness ended his streak in May 1939. He died of the disease two years later, aged 37.

Which Cambridge physicist was diagnosed with ALS at 21, given two years to live, and survived for over 50?

Stephen Hawking had an unusually slow-moving form of the disease. In later life he worked his speech synthesizer with a single cheek muscle.

Which viral social media stunt of summer 2014 raised more than $115 million to fight ALS?

The Ice Bucket Challenge had people film themselves being drenched in freezing water, then nominate friends to follow. The money helped fund the discovery of NEK1, a gene linked to ALS.

Stephen Hillenburg, who kept working after an ALS diagnosis in 2017, created which long-running Nickelodeon cartoon?

SpongeBob SquarePants grew out of a tide-pool picture book Hillenburg made while teaching marine biology. He died in 2018, aged 57.

Movement of which body part is usually spared by ALS, letting many patients communicate through special computers?

Eyes usually stay under voluntary control even late in the disease. Gaze-tracking screens let people type and speak simply by looking at letters.

Which disease, unlike ALS, is caused by the immune system attacking the myelin coating around nerve fibres?

Multiple sclerosis strips the insulation from nerve fibres, while ALS kills the nerve cells that drive the muscles. MS often comes and goes in relapses; ALS advances steadily.

Which Mitch Albom memoir recounts his visits to a former professor who was dying of ALS?

Tuesdays with Morrie began after Albom saw his old sociology professor interviewed on Nightline. It spent more than four years on the New York Times bestseller list.

In which country is ALS usually called motor neurone disease, a term coined by neurologist Russell Brain?

In Britain, motor neurone disease, or MND, is the umbrella term. Brain proposed it in 1933, believing that several muscle-wasting conditions were forms of one illness.

Which group does research suggest is up to twice as likely to develop ALS, for reasons that remain unclear?

Military veterans may meet pesticides and other toxins in service, though no cause is proven. Since 2008 the US has presumed ALS to be service-connected after 90 days of active duty.

Failure of which body function causes most ALS deaths, usually within three to five years of the first symptoms?

Breathing fails as the diaphragm and chest muscles weaken. A ventilator worn through a face mask can ease symptoms and lengthen life.

Which French doctor, known as the founder of modern neurology, first described ALS in 1869?

Jean-Martin Charcot matched his patients' symptoms to the nerve damage he found at autopsy. His students at the Salpêtrière hospital in Paris included Sigmund Freud.

The word 'amyotrophic' in the full name of ALS comes from Greek roots with what literal meaning?

No muscle nourishment is the literal sense: a- for no, myo- for muscle, trophe for nourishment. Muscles that lose their nerve supply shrink as if starved.

What term do doctors use for the nine in ten ALS cases with no family history of the disease?

Sporadic ALS has no single known cause, though genes and environment are both thought to contribute. The remaining cases, called familial, run in families.

What name is given to the quarter of ALS cases that begin in the muscles of speech and swallowing?

Bulbar onset takes its name from the bulb, an old term for the lowest part of the brainstem, which controls the mouth and throat. Slurred or nasal speech is a typical early sign.

What is the medical name for the fleeting muscle twitches under the skin that can be an early sign of ALS?

Fasciculations arise when a lower motor neuron fires on its own. Most are harmless: up to 70 percent of healthy people get them now and then.

Which drug, approved for ALS in the United States in 1995, extends survival by two to three months?

Riluzole, sold as Rilutek, won European approval a year later. In some people it also delays the point at which a ventilator is needed.

An excess of which chemical messenger is thought to overexcite and kill motor neurons in ALS?

Glutamate carries signals between nerve cells, but too much floods them with calcium, a process called excitotoxicity. Motor neurons are unusually vulnerable to it.

Which test, usually paired with a nerve conduction study, helps doctors confirm a diagnosis of ALS?

Electromyography uses a fine needle electrode to pick up the electrical activity of muscles. No single test proves ALS, so doctors must also rule out look-alike conditions.

Which Grammy-winning soul singer retired in 2022 after ALS made it impossible for her to sing?

Roberta Flack was the first artist to win the Grammy for Record of the Year two years running. She died in 2025, aged 88.

Which gene on chromosome 21 became, in 1993, the first to be linked to inherited ALS?

SOD1 carries the instructions for an enzyme that mops up toxic oxygen radicals. Well over 100 different mutations in it have since been tied to the disease.

A repeated six-letter DNA sequence in which gene, identified in 2011, is the most common inherited cause of ALS?

C9orf72 is named for its address: chromosome 9, open reading frame 72. Healthy copies repeat the sequence a handful of times; faulty ones can repeat it thousands of times.

Clumps of which protein are found inside the motor neurons of about 97 percent of people with ALS?

TDP-43 normally works in the cell nucleus, helping to control which genes are switched on. In ALS it leaks out and piles up in the surrounding cytoplasm.

On which Pacific island did the Chamorro people develop an ALS-like illness at 100 times the usual rate?

Guam's outbreak was the leading cause of adult death among the Chamorro between 1945 and 1956. One theory blames a toxin from cycad seeds, concentrated in the fruit bats that islanders ate.

Which former New Orleans Saints player, famed for a 2006 blocked punt, won a Congressional Gold Medal for ALS advocacy?

Steve Gleason revealed his diagnosis in 2011 and became the first NFL player to receive the medal. A statue of his punt block, titled Rebirth, stands outside the Superdome.

Which blues singer, the self-styled King of the Twelve-String Guitar, was diagnosed with ALS on a 1949 European tour?

Lead Belly died in New York later that year. The following year the Weavers took his song Goodnight, Irene to number one in the United States.

Which neurologist's name is given to the upward curl of the big toe that signals upper motor neuron damage in ALS?

Joseph Babinski's toe response is a normal reflex in infants. In an adult it indicates damage to the brain or spinal cord.

What is the medical term for the wasting away of muscles that have lost their nerve supply in ALS?

Atrophy follows because muscles cut off from their motor neurons no longer receive signals to contract. About two-thirds of cases begin with weakness in an arm or a leg.

Which drug, approved for ALS in the United States in 2017, was already used in Japan to treat stroke?

Edaravone, sold as Radicava, is an antioxidant thought to shield nerve cells from oxidative stress. It modestly slows decline in some people with early-stage ALS.

Which medical term names the swallowing difficulty that develops in about 85 percent of people with ALS?

Dysphagia raises the risk of choking and of food slipping into the lungs. When eating is no longer safe, a feeding tube can maintain weight and nutrition.

Which term describes the muscle stiffness and tightness caused by upper motor neuron damage in ALS?

Spasticity comes with brisk, exaggerated reflexes, another mark of upper motor neuron damage. Loss of lower motor neurons instead leaves muscles weak and twitching.

Which Pulitzer-winning playwright, who played pilot Chuck Yeager on screen, died of ALS complications in 2017?

Sam Shepard won the Pulitzer for Buried Child and a record ten Obie Awards for off-Broadway theatre. He died at home in Kentucky, aged 73.

Which Leeds Rhinos rugby league star, diagnosed with ALS in 2019, was made a CBE for raising awareness of it?

Rob Burrow and former teammate Kevin Sinfield, who ran seven marathons in seven days, raised millions of pounds for research and care. Both were made CBEs in 2024.

Which jazz bassist and bandleader kept composing in the late 1970s after ALS left him unable to play?

Charles Mingus spent his last months working with Joni Mitchell, who wrote words for his tunes. Her album Mingus appeared in 1979, the year he died in Mexico.

Which of these abilities does ALS generally leave intact throughout the course of the disease?

Sense of touch survives, as do hearing, taste and smell, because ALS largely spares the sensory nerves. The disease causes no pain directly, though immobility often does.

ALS belongs to which broad family of diseases, ranking third in frequency behind Alzheimer's and Parkinson's?

Neurodegenerative diseases involve the progressive loss of nerve cells. In ALS the cells lost are the motor neurons, which is why its first signs are weakness and wasting rather than memory loss.

What name is given to the state, reached in some advanced ALS cases, of being aware but almost totally paralysed?

Locked-in syndrome leaves thinking and awareness intact while the body can barely move. Its most common cause is damage to the pons in the brainstem, often from a stroke.

The motor neurons that ALS destroys carry signals from the brain and spinal cord to which type of muscle?

Skeletal muscle is the kind a person moves at will, so walking, speaking and chewing all become harder as the disease spreads through the body.

Which habit, more strongly in men than in women, is among the exposures most consistently linked to ALS?

Smoking tobacco sits beside heavy metals, pesticides, solvents, electric shock and head injury on the list of best-supported risks. Most cases still have no identifiable cause.

Which drug, approved in the United States in 2023, treats only the ALS caused by one particular faulty gene?

Tofersen, sold as Qalsody, is injected into the fluid around the spinal cord. It is an antisense drug: a short strand of genetic material that stops a harmful protein from being made.

Which vice president under Franklin D. Roosevelt, later a third-party presidential candidate, died of ALS in 1965?

Henry A. Wallace ran for president in 1948 for the new Progressive Party. Before politics he founded a hybrid seed corn company that became hugely successful.