When a famous person has ALS, the world stops and listens. It’s a diagnosis that feels like a gut punch, mostly because we’ve watched these people on our screens or followed their careers for years. Suddenly, "McSteamy" or a legendary NFL safety is facing the same terrifying reality as thousands of regular families.
Honestly, the news usually hits the same way every time. First, there's the shock. Then, the realization that amyotrophic lateral sclerosis—or Lou Gehrig’s disease—is an absolute beast of a condition. It doesn’t care about fame, money, or how many Emmys you have on your shelf.
The Recent News: Eric Dane’s Brave Fight
If you’ve been keeping up with the news lately, you probably saw that Eric Dane (of Grey’s Anatomy and Euphoria fame) went public with his diagnosis in April 2025. It’s been heavy. Dane, who is only 53, has been incredibly open about what life looks like now.
He’s not just sitting back. He’s been in Washington D.C. as recently as late 2025, pushing for the reauthorization of the ACT for ALS Act. Basically, he’s using his platform to make sure future patients can get access to experimental treatments before it’s too late. His ex-wife, Rebecca Gayheart, has also been vocal about the reality of 24/7 care, showing the side of this disease that usually stays behind closed doors.
Why We Call It Lou Gehrig’s Disease
It’s weird to think that a disease could be so tied to one person’s name for nearly a century. Lou Gehrig was the original "famous person with ALS" in the public eye.
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In 1939, the legendary Yankees first baseman stood in front of a packed stadium. He told the crowd he was the "luckiest man on the face of the earth." He was dying, and he knew it. It was a moment of pure class that basically put ALS on the map for the general public. Before him, nobody really knew what it was.
The Outlier: Stephen Hawking
You can't talk about ALS without mentioning Stephen Hawking. He's the ultimate outlier. Most people diagnosed with ALS are told they have three to five years. Hawking lived with it for over 50 years.
Scientists are still trying to figure out why his case was so different. He was diagnosed at 21, which is super rare. Usually, this hits people in their 50s or 60s. Because it started so young, his progression was agonizingly slow, allowing him to rewrite our understanding of black holes and the universe while confined to a wheelchair. He’s the reason many people realize that ALS doesn't touch the mind—it only traps it.
Famous Figures Currently Living With or Recently Lost to ALS
This list is always harder to write than it is to read. It's a reminder of how diverse the "ALS club" actually is.
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- Steve Gleason: The former New Orleans Saints player is perhaps the most famous advocate living today. He’s been in the fight since 2011. His foundation, Team Gleason, is basically the gold standard for getting technology (like eye-tracking computers) into the hands of patients.
- John Driskell Hopkins: The founding member of the Zac Brown Band announced his diagnosis in 2022. He’s been performing when he can, showing that life doesn't just end the day you get the news.
- Roberta Flack: The "Killing Me Softly" singer was diagnosed in 2022. Sadly, she passed away in February 2025 at the age of 88. Her team made it clear that while she couldn't sing anymore, her spirit stayed intact until the end.
- Bryan Randall: Sandra Bullock’s longtime partner passed away in 2023 after a very private three-year battle. It was a reminder that even in the age of social media, some people choose to fight this in the shadows.
The Broadway Connection: Aaron Lazar
Broadway star Aaron Lazar went public with his diagnosis in early 2024. If you’ve ever seen him on stage, you know his voice is a powerhouse. Watching a performer lose their physical ability to move while maintaining their artistic soul is something that really brings home how cruel this disease is. He’s been a massive advocate for the I AM ALS community, often speaking about the "healing" power of mindset even when the body is failing.
What People Get Wrong About ALS
When people search for "what famous person has ALS," they usually expect a list of names. But the "why" is just as important.
Myth 1: It only affects old people.
Nope. Look at Stephen Hawking (21) or Pete Frates (27). It can hit anyone.
Myth 2: It affects your brain's intelligence.
Rarely. While some people develop frontotemporal dementia, most remain completely sharp. They are "locked in." They see, hear, and think perfectly, but they can't move a finger.
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Myth 3: There is no hope.
Treatments like Relyvrio (though it had a rocky road with FDA pullbacks) and Qalsody for genetic forms are starting to change the landscape. We aren't there yet, but 2026 feels a lot different than 1939 did for Lou Gehrig.
Actionable Insights for the ALS Community
If you or someone you know is navigating a diagnosis, the "famous" examples show us a few things that actually work:
- Get a multidisciplinary clinic: Don't just see a local neurologist. Go to an ALS-certified center where they have speech therapists, respiratory therapists, and nutritionists all in one room.
- Look into "Voice Banking": Do this early. Like John Driskell Hopkins or Eric Dane, recording your voice now means you can use it later through a computer.
- Connect with Team Gleason: They are the best in the world at providing the tech that keeps you connected to your family.
- Join a registry: The National ALS Registry helps researchers track why this happens. It's the only way we're going to find a cure.
The reality of ALS is heavy, but the people who have lived it in the spotlight have given the rest of us a blueprint for how to face it with dignity. Whether it’s Eric Dane advocating on Capitol Hill or Steve Gleason rolling across a stage, they remind us that a diagnosis isn't a disappearance.
Next Steps for Support
- Visit I AM ALS to find out how to support the reauthorization of the ACT for ALS.
- Check out Team Gleason to see how technology is bridging the gap for patients.
- Support local ALS Association chapters to provide direct care for families in your area.