Honestly, most of us only know about ALS because of a baseball player from the 1930s or a guy in a wheelchair who talked like a computer. That’s just the reality of it.
When you hear the term Amyotrophic Lateral Sclerosis, your brain probably jumps straight to the "Ice Bucket Challenge" or maybe that scene in a movie where a character suddenly can't button their shirt. It’s scary. It’s heavy. But looking at the lives of famous people with ALS isn't just a trip through a medical textbook—it's actually a weirdly hopeful look at how much the human spirit can take before it breaks.
And spoiler: it takes a lot.
The Iron Horse and the Birth of "Lou Gehrig’s Disease"
Let's talk about Lou Gehrig for a second. Imagine being the "Iron Horse." You’ve played 2,130 consecutive games. You’re the literal definition of durability. Then, suddenly, in 1938, the balls you used to knock out of the park are barely reaching the outfield.
You’re tired. You don't know why.
By 1939, Gehrig was struggling to make routine plays at first base. He famously told his manager, Joe McCarthy, "I'm benching myself, Joe." On his 36th birthday, he got the news from the Mayo Clinic. It was ALS.
Back then, nobody knew what the heck that was.
His "Luckiest Man" speech is legendary, but the grit it took to stand there, knowing his body was essentially deleting its own software, is what really sticks. He died just two years later. Because of him, the disease got a face, but it also got a reputation for being a lightning-fast death sentence.
Stephen Hawking: The Outlier Who Broke the Rules
Then you have Stephen Hawking.
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Hawking is the guy who looked at the 2-to-5-year life expectancy and said, "Nah, I'm good." He lived with the disease for 55 years.
That’s not normal.
Most doctors will tell you that Hawking was a medical freak of nature. He was diagnosed at 21. Usually, when you get it that young, it’s a specific, slow-progressing form. But even so, he lost the ability to walk, then his voice, and eventually almost every motor function except for a few facial muscles.
He used those cheek muscles to scan and select characters on a screen to write A Brief History of Time. Think about that. He wrote a bestseller by twitching his face.
Why did he live so long?
- Early Onset: Younger patients sometimes see slower progression.
- High-Level Care: He had 24-hour nursing care, often funded by grants and his own success.
- The Diaphragm Factor: In ALS, the "timer" is usually tied to your breathing muscles. Hawking’s diaphragm held out way longer than typical cases.
Modern Faces: Steve Gleason and the "No White Flags" Movement
If Lou Gehrig is the history and Hawking is the science, Steve Gleason is the heart.
Gleason was an NFL player for the New Orleans Saints. If you follow football, you know "The Block." In 2011, he was diagnosed at age 34. Instead of fading away, he started Team Gleason.
His mantra? "No White Flags."
He’s been the driving force behind the Steve Gleason Act, which basically forced the government to keep paying for speech-generating devices for patients. Before him, if a patient went into a hospital or nursing home, Medicare would sometimes stop paying for the very tech that gave them a voice. Gleason changed that.
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He’s still here, by the way. He’s thriving. He’s using eye-tracking tech to drive his wheelchair and communicate. It’s proof that while we don't have a cure yet, we have the tech to make life worth living.
The Private Battles: Bryan Randall and Roberta Flack
Not everyone wants to be the face of a movement.
Take Bryan Randall, Sandra Bullock’s longtime partner. He fought the disease for three years in total secrecy. He passed away in 2023 at age 57. It was a shock to the public, but it highlighted a huge truth: famous people with ALS often deal with the "invisible" stage of the disease for a long time before the world notices.
Then there’s the legendary Roberta Flack.
In 2022, her team announced she had ALS and could no longer sing. For a woman whose voice was her entire identity, that’s a specific kind of cruelty. It shows that ALS doesn’t care if you’re an athlete or a soul singer; it targets the motor neurons, period.
What People Get Wrong About ALS
There are some big myths floating around that honestly need to be cleared up.
1. It’s always fast.
Nope. While the average is 2 to 5 years, about 10% of people live past the 10-year mark. It’s a spectrum, not a single track.
2. It only hits old people.
Tell that to Pete Frates, the Boston College baseball captain who co-founded the Ice Bucket Challenge. He was 27.
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3. You lose your mind.
Actually, for most people, their brain stays 100% sharp. You’re a prisoner in a body that won’t follow orders. However, about 20% of cases do involve something called Frontotemporal Dementia (FTD), which changes personality and behavior. It’s complicated.
Real Talk: The State of Research in 2026
We aren't in the 1930s anymore.
We have drugs like Riluzole, Edaravone, and the newer Tofersen (which targets a specific genetic mutation called SOD1). They aren't "cures"—let’s be honest about that—but they are brakes. They slow the car down.
The focus now is on "Biomarkers." Scientists are trying to find a way to catch ALS before the first muscle twitch even happens. If they can catch it early, they might be able to stop the neurons from dying in the first place.
How to Actually Help (Beyond the Bucket)
If you’re reading this because someone you know was diagnosed, or you're just curious, here’s the move:
- Support Local: National organizations are great for research, but local ALS chapters provide the "Loan Closets." These are places where families can get $30,000 wheelchairs or speech devices for free.
- Advocate for Tech: Support companies making eye-gaze technology. It is the difference between silence and being able to say "I love you" to your kids.
- Clinical Trials: If you're a patient, look into the HEALEY ALS Platform Trial. It’s a massive, multi-regimen study designed to speed up the process of finding effective treatments.
ALS is brutal. There’s no sugarcoating it. But from Lou Gehrig to Steve Gleason, these stories show that while the disease might take the muscles, it usually fails to take the person.
Next Steps for You:
Check out the Team Gleason website to see how assistive technology is evolving, or look into the ALS Association's local chapters to find out how you can volunteer or donate equipment to families in your immediate area.