You know the image. It is 2006. The Louisiana Superdome is vibrating with an energy that felt more like a collective exorcism than a football game. The New Orleans Saints were playing their first home game since Hurricane Katrina ripped the city’s heart out. Then it happened. Steve Gleason, a special teams regular known more for his grit than his stats, dove. He blocked an Atlanta Falcons punt. It wasn’t just a play; it was a rebirth.
But for most people looking up the Saint player with ALS, that legendary block is only the prologue.
The real story started in 2011. That's when Gleason, at just 34 years old, was diagnosed with Amyotrophic Lateral Sclerosis. It’s a brutal, relentless disease. It robs you of your ability to walk, then talk, then breathe. Doctors told him he might have three years. They were wrong. He's still here. And honestly, what he’s done in the decade-plus since that diagnosis has probably impacted more people than any Super Bowl ring ever could.
Living with ALS when your body was your career
Being an athlete means your body is your instrument. When that instrument starts to fail, it isn't just a health crisis—it’s an identity crisis. Gleason didn't just sit back. He and his wife, Michel, decided to document everything. If you haven't seen the documentary Gleason, prepare to have your heart put through a blender. It’s raw. It shows the messy, painful, and deeply human side of a Saint player with ALS trying to be a father while his nerves are literally short-circuiting.
ALS is a neurodegenerative disease. Basically, the motor neurons that tell your muscles to move just quit. In Steve’s case, the progression was relatively swift in terms of physical mobility, but his mind remained as sharp as a playbook.
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He’s used that mind to move mountains.
The Gleason Initiative Foundation—better known as Team Gleason—wasn't just another charity. It became a tech incubator. Steve realized early on that if he couldn't move his arms, he needed his eyes to do the work. This led to a massive push for "eye-tracking" technology. Imagine typing an entire book or communicating with your kids just by looking at letters on a screen. That isn't sci-fi; it's Steve's daily reality.
The legislative power of a punt blocker
Most people don't realize that a former football player is responsible for federal law. In 2015, President Obama signed the Steve Gleason Act. It sounds dry, but it was a lifesaver. Before this, Medicare had some weird, bureaucratic rules that made it incredibly difficult for patients with ALS to get the speech-generating devices they needed.
The law fixed that. It ensured that people who lost their voices could keep the technology that gave them one back.
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It’s easy to look at a celebrity and think their experience with a disease is "easier" because of their resources. Sure, the Saints community rallied behind him. But ALS doesn't care about your bank account. It costs roughly $200,000 a year to provide the 24/7 care someone in the advanced stages of ALS requires. Gleason saw that most families were being crushed by these costs, and he turned Team Gleason into a machine that provides equipment and "adventures" for people who thought their lives ended with a diagnosis.
Why we still talk about the Saint player with ALS
We talk about him because he refused to disappear.
In 2024, Steve was awarded the Arthur Ashe Award for Courage at the ESPYs. His speech—delivered via his communication device—was a masterclass in perspective. He talked about how he had to "re-purpose" his life. He didn’t use the word "suffer." He talked about "living."
There is a huge misconception that ALS is a "rare" disease. It's actually classified as an orphan disease, but about 5,000 people in the U.S. are diagnosed every year. The link between professional football and neurodegenerative diseases like ALS and CTE is a dark cloud over the sport. While the NFL has faced massive lawsuits regarding concussions, Gleason has remained a bridge. He loves the game, but his life is a living testament to the risks the players take.
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- He has lived more than quadruple his initial life expectancy.
- His foundation has provided over $20 million in technology and care.
- He was the first NFL player to receive the Congressional Gold Medal.
The grit that made him a special teams ace is the same grit keeping him alive. It’s not about being "heroic" in a comic-book way. It’s about the grueling, minute-to-minute choice to keep breathing when the hardware of your body has given up.
Navigating the reality of the diagnosis today
If you or someone you love is looking into the journey of this Saint player with ALS because of a recent diagnosis, the landscape has changed since 2011. Back then, there were fewer options. Today, we have drugs like Tofersen (for specific genetic types) and others that aim to slow progression.
But the "Gleason way" isn't just about medicine. It’s about the environment. He advocates for "Adventures"—trips to Machu Picchu or just getting out of the house. The philosophy is simple: until there is a cure, we have to make life worth living.
He often says that while his body is a "statue," his soul is on fire.
Practical steps for those touched by ALS
If you’re here because you’re looking for a way to help or you’re dealing with a diagnosis yourself, don't just read and click away. This disease moves fast, but the support network is stronger than it used to be.
- Reach out to Team Gleason immediately. They aren't just a figurehead organization; they provide actual, physical equipment, from specialized power wheelchairs to those life-changing speech devices.
- Get a "Voice Bank." If you or a loved one still has some speech, use services like Model Talker. You record your voice so that when you eventually need a computer to talk for you, it sounds like you, not a robot.
- Look into the ALS Association's local chapters for support groups. The mental toll on caregivers—people like Michel Gleason—is immense. You cannot do this alone.
- Check clinical trial eligibility. Sites like Northeast ALS Consortium (NEALS) track ongoing research.
Steve Gleason proved that a diagnosis isn't a vanishing act. He’s still a New Orleans Saint. He’s still a father. He’s still a husband. He just happens to be doing all of it while fighting one of the toughest opponents in medical history. He didn't just block a punt; he blocked the idea that ALS means the end of a meaningful life.