“After my diagnosis, I didn’t have the option to look away. I knew I had to do something while I still could. Advocacy gave me power when everything else was being stripped away.” - Anthony Carbajal
In 2014, the ALS Ice Bucket Challenge raised about $220 million dollars for ALS organizations around the world, including $4 million dollars for research at the ALS Therapy Development Institute (ALS TDI). Anthony Carbajal, who was diagnosed with ALS at the age of 26, was responsible for the majority of ALS TDI’s funds. When ALS TDI challenged him to take the ALS Ice Bucket Challenge, Anthony responded by creating his own video that quickly went viral. Weeks later, Ellen DeGeneres, whom Anthony had challenged, invited him onto her show to encourage donations for ALS research. The result was an astounding $3 million raised for ALS research.
Now, in 2025, Anthony is sharing his ALS Ice Bucket Challenge video again and calling for people to donate to support ALS TDI’s research to end ALS. He’s chosen to resurface his original call to action as the IBC has again entered the public consciousness. The challenge is going viral again, but this time, the fundraising is focused on supporting youth mental health.
Anthony acknowledges that mental health is a great cause. However, he believes that it is important to remember the original purpose of the ALS Ice Bucket Challenge—particularly since, 11 years later, there are still no effective treatments for most people with the disease.
Anthony joined ALS TDI to discuss the legacy of the IBC, why it’s still essential to support ALS Research, and what gives him hope after more than a decade of ALS advocacy.
ALS TDI: First off, can you briefly introduce yourself and talk about how ALS has affected your and your family’s lives?
Anthony Carbajal: My name is Anthony Carbajal. I was diagnosed with ALS at 26 years old. My mother had ALS. My grandmother had ALS. It runs in my family like a curse — except it doesn’t just haunt, it devastates.
This disease slowly took away my ability to walk, to move freely, to eat, speak, and breathe on my own. I’m now almost completely paralyzed and dependent on a ventilator — but my mind, my humor, my heart, and my sense of purpose are still here. ALS took my body, but not my will to fight for others.
What initially inspired you to get involved in ALS advocacy?
Watching my mother have ALS while I was still in my early twenties made me painfully aware that no one was talking about this disease — and worse, no one was funding it. After my diagnosis, I didn’t have the option to look away. I knew I had to do something while I still could. Advocacy gave me power when everything else was being stripped away.
Can you talk a little bit about what it was like participating in the IBC back in 2014?
Back in 2014, I filmed a video pouring a bucket of ice water over my head — just like everyone else — but halfway through, I shared the raw truth: that I had just been diagnosed with ALS.
I was vulnerable — and crying. That video was terrifying to make. But it went viral. Millions of people saw it, and suddenly ALS wasn’t invisible anymore. For the first time, I felt like the world was listening.
Why did you choose to support ALS TDI at the time?
ALS Therapy Development Institute was one of the only organizations back then that made science feel personal. They weren’t just talking about someday — they were working on real treatments right now. Their passion, transparency, and relentless focus on finding a cure made it easy to trust them with the momentum we were building.
What was it like watching it become a global phenomenon? Why do you think it caught on like that?
It was surreal. One moment I was crying in a YouTube video, and the next, celebrities, politicians, athletes — even people in other countries — were dumping ice water to support ALS.
I think it caught on because it was simple, shareable, a little absurd — and most importantly, it was tied to a cause with a real, urgent need. It gave people a reason to care and something fun to do. That combination is rare.
What do you think the legacy of the IBC has been over the past decade?
It woke people up. It taught the world three letters — A, L, S — and attached real human faces and stories to them. It raised over $200 million globally, jumpstarting research that never would have happened otherwise.
The Ice Bucket Challenge gave ALS a voice. A legacy. It’s proof that collective action can do the impossible — even for the most ignored diseases.
How do you feel the overall ALS landscape has changed since then, with regard to things like research, policy, and/or awareness?
Since 2014, ALS has gone from being an obscure diagnosis to a recognized crisis. There’s more research, more clinical trials, and more collaboration between scientists, patients, and policymakers.
But progress is still too slow. People are still dying. Families are still being broken apart. We’re not there yet — but we’re closer.
What has kept you engaged in ALS advocacy over the years?
This disease doesn’t let me walk away — literally or figuratively. But even if it did, I wouldn’t.
I stay because of the family & friends I’ve lost. Because of the ones still fighting. Because every time I tell my story, someone says, “I didn’t know ALS was like that.”
I keep going because if I don’t, who will?
Are there any changes over the time you’ve been involved in ALS advocacy that make you hopeful? On the other hand, what are some of the issues that you feel still need to be addressed?
I’m hopeful because patients are leading the conversation now. We have a seat at the table. We’re organizing, fundraising, pushing legislation, even helping design trials. That wasn’t happening ten years ago.
But we still need faster access to experimental treatments. We need global equity in care and funding. We need to stop seeing ALS as an “unsolvable mystery” and start treating it like the emergency it is.
Why do you think it’s still important to support ALS research?
Because we are so close to breakthroughs — but close isn’t enough.
Research means real treatments, not just for me but for the next generation. It means parents living long enough to see their kids grow up. It means families staying whole.
Every dollar moves us closer to a world where this disease is survivable — or better yet, preventable.
What do you think of the recent resurgence of the IBC for mental health causes?
I think it’s beautiful. Suffering, whether it’s neurological or emotional, deserves compassion and awareness.
I just hope that as the challenge evolves, people remember where it started — with ALS — and continue to support both causes with heart and intention.
As a new generation learns about the IBC, what do you hope they will take away from it?
That awareness alone isn’t the goal — action is.
That one video, one post, one person can change the world.
And that no matter how hard or scary life gets, your voice — your story — is powerful. Use it.
Anything else you’d like to add?
Yes. I want people to know that I’m not just surviving — I’m creating.
I run a cat sanctuary. I use AI to make art and speak. I laugh. I love. I advocate.
ALS limits what I can do — but not who I am.
And if you’re reading this, I hope it inspires you to fight for something that matters to you too. Because that’s how change happens: one bold, imperfect, human story at a time
To learn more about the ALS Ice Bucket Challenge and how it impacted research at ALS TDI, click here.
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