Famous people with ALS (13 person List)


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Page last updated: 27/09/2022

Famous people with ALS (13 person List)

In this guide, we will see Famous people with ALS, what ALS is, most common symptoms and some additional considerations about ALS. Additionally, we will discuss a bit more about the particular case of Stephen Hawking which is considered to be the person who lived the longest while having ALS. 

Famous people with ALS

You may have never guessed how many famous people have ALS but, What is ALS? It stands for Amyotrophic Lateral Sclerosis. When we hear it we don’t think many famous people will have ALS. In fact, you may know by now how rare this disease is and how damaging it is to the nerves that it ends up destroying them, gradually. This is a very debilitating disease with no known cure. 

However, many people were not even aware of its existence until the ‘Ice Bucket Challenge’ went viral in social media back in 2014. It makes sense then that the people that do know about the disease are because they have a friend or relative who suffers from it, but it can also happen that their favourite celebrity or influential people have this condition. 

Moreover, this disease was often referred to as Lou Gehrig’s Disease, which is named after a famous baseball player who was diagnosed with it in his late 30s. In the USA, the term ‘Lou Gehrig’s Disease’ is much more widespread than ALS. 

Here are some of the most famous people with ALS:

  • Lou Gehrig 
  • Stephen Hawking 
  • Ezzard Charles 
  • Dwight Clark 
  • Mao Zedong 
  • Tim Green
  • Jon Stone 
  • Steven Gleason 
  • Augie Nieto
  • Charles Mingus
  • Chris Pendergast
  • Dan Toler
  • David Niven
  • Dennis Day
  • Dieter Dengler
  • Don Revie
  • Fokko du Cloux
  • Hans Keller
  • Jacob Javits
  • James Augustus “Catfish” Hunter
  • Jason Becke
  • Lane Smith
  • Lead Belly – Huddie William Ledbetter
  • Michael Soles
  • Michael Zaslow
  • Stanley Sadie
  • Simon Fitzmaurice
  • Samuel Shepard Rogers III
  • Morrie Schwartz

Finally, you may have recognized some of the names within the list and some others you may not but it is important to bring awareness about this complex and debilitating disease, that up to this date doesn’t have a known cure. However, it seems that a combination of detecting it as soon as possible and clinical care may prolong life’s expectancy. 

Famous people with ALS (13 person List)

Who is at risk of developing ALS?

Even if it is considered one of the most common neuromuscular diseases worldwide, ALS is considered a very rare disease. Additionally, it is believed that people from all races and ethnic backgrounds can be affected by it.

As indicated by disabled-world.com, “Amyotrophic lateral sclerosis (ALS, sometimes called Lou Gehrig’s Disease or Maladie de Charcot) is a progressive, invariably fatal, neurodegenerative disease caused by the degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement. Between 1 to 2 people per 100,000 develop Lou Gehrig’s Disease each year. ALS most commonly strikes people between 40 and 60 years of age, but younger and older people can also develop the disease”.

What are the symptoms?

Scientists have suggested that male seem to be slightly more affected than women and the onset may be so subtle that the symptoms often can go undetected. The earliest symptoms of ALS may include:

  • Tripping and falling
  • Hand weakness or clumsiness
  • Weakness in your leg, feet or ankles
  • Slurred speech or trouble swallowing
  • Difficulty walking or doing your normal daily activities
  • Difficulty holding your head up or keeping good posture
  • Muscle cramps and twitching in your arms, shoulders and tongue
  • Eventually, ALS weakens muscles, including muscles used for breathing, until they become paralyzed.

Moreover, every individual may not present all the symptoms we have mentioned or symptoms may vary over time. 

How did Stephen Hawking survive so long with ALS?

Stephen Hawking is one of the mysteries of science according to many experts and it has been said that it may have been the longest-living ALS survivor. Stephen Hawking will always be remembered as one of the most brilliant scientific minds in the History of Humankind. We know that the cause of death was likely amyotrophic lateral sclerosis and as mentioned, it is a neurodegenerative disease that wears away at nerve and muscle function gradually. 

He was first diagnosed when he was young, at the age of 21 to be precise and doctors told him he had a short life expectancy. This is considered to be a not so common condition where there is limited information, especially the specific causes of ALS. People with ALS are usually diagnosed between the ages of 40 and 60, and men seem to be more prone to develop the condition. However, since Stephen Hawking was diagnosed so young, it may be one of the reasons why he was able to live more than it was expected. 

How rare is Hawking’s longevity?

As indicated by an article posted in time.com, “Quite rare. Just 5% of ALS patients live longer than 20 years, according to the ALS Association, and it’s virtually unheard of to survive for 50 years or more — though North America’s longest-living ALS patient, a Canadian named Steven Wells, has had the condition for almost 40 years”. 

Moreover, many experts consider Hawking’s case to be a mystery and they add how they are not aware of anyone else that survived as long as he did. Hawking was also able to evade dementia which is common for people with ALS. 

This disease is very complex and every journey should be examined on a case by case basis. Scientists and researchers are still investigating, trying to understand their genetics, personal circumstances, history, etc. There are only a few cases documented of extreme longevity but since the sample size is too small to draw general conclusions about the disease, they tend to speculate on what they understand about it.  

Why is this blog about Famous people with ALS important?

You may have never known some of the famous people with ALS we have mentioned, however, some others such as Stephen Hawking or Lou Gehrig are known worldwide. Moreover, you may not be familiar with the term ALS of what it means so we deemed it important to mention what it is to keep bringing awareness to such devastating and debilitating disease.

As we have mentioned, so far there is no known cure and people with ALS don’t live long. But there are truly inspirational stories out there from famous people who know first hand what it means to deal with this disease. 

Please feel free to leave any comments or thoughts about the content of this article!

Frequently Asked Questions (FAQs) about Famous people with ALS

Who is the longest living person with ALS?

Stephen Hawking was believed to be the longest living person with ALS. He was an astrophysicist whose ALS was diagnosed back in 1963. He had ALS for 55 years, the longest recorded time and he died at the age of 76 in 2018.

What movie star has ALS?

Sam Shepard was a movie star that had ALS. He was known to be an actor, director and playwright who died after battling with ALS or Amyotrophic Lateral Sclerosis. The star passed away at his Kentucky home on Thursday, July 27, surrounded by his family following a lengthy and private battle.

Has anyone ever recovered from ALS?

No one has even fully recovered from ALS since it is a very debilitating, progressing and devastating disease. Scientists and researchers are still trying to unravel the mysteries around this complex disease where documented cases end in a high mortality rate. 

How did Stephen Hawking live so long with ALS?

It has been suggested that Stephen Hawking lived so long with ALS because the disease was detected early in his life, allowing him to take care of his condition the best way possible. He was a fascinated astrophysicist with his otherworldly theories but he also defied medicine by living with ALS for 55 years.

How do most ALS patients die?

Most ALS patients die from respiratory failure, which happens when people can’t get enough oxygen from their lungs into their bloodstream or if they can’t properly remove carbon dioxide from their bloodstream. However, they can also die from other complications.