Remembering Pat Quinn, and how “Everything can Change in an Instant”

Less than a week before Thanksgiving, Pat Quinn, co-founder of the ALS Ice Bucket Challenge, passed away from the disease. His passing follows that of the other Ice Bucket Challenge co-founder Pete Frates, who passed away in December 2019.

It might be tempting to think of Pat’s passing as just another example of how difficult 2020 has been, but when Pat spoke on the 5th Anniversary of the Ice Bucket Challenge in August 2019, his message was not one of dwelling on our setbacks, but one to embrace the possibilities life offers:

“Time is a funny thing. Everything can change in an instant, or nothing can change for decades. You never know what life will yield. It’s important to take every moment and live in a way that moves you, moves others. Make your time here purposeful and authentic.

I can’t believe five years has passed since the Ice Bucket Challenge broke down the barriers to a disease that people turned a blind eye to for centuries.


Nobody knew the Ice Bucket Challenge would become a worldwide phenomenon, but we united as one because that is what it takes to change a disease like ALS. The Ice Bucket Challenge connected with a sweet left hook to the jaw of ALS and shook the disease up, but by no means is this fight over. We need to knock this disease out.

Once again, we need to challenge the world to rally behind our fight. When the Ice Bucket Challenge happened, I was walking, talking, eating, and even breathing on my own. You can see what ALS does. Don’t look away.”

Pat Quinn, August 2019

When Pete Frates passed away in 2019, the world had not yet heard of COVID-19, but we also had not heard of the exciting news we learned in 2020 about possibilities AMX0035 may offer to the ALS Community. When the Ice Bucket Challenge burst onto the scene in the summer of 2014, none of us knew what those donations might lead to. But now more than six years later, advances in research have created more hope than ever that this disease can be understood, treated, and—someday—cured.

As the calendar rolls to December, our thoughts often turn to remembering the year that was. For many, this year has been one of big challenges, small victories, and hope for a better 2021. But Pat Quinn’s passing reminds us that ALS does not stop, so across the nation and the world—and here in our community—the fight continues.

We can’t know what the future might hold. Time is a funny thing. The passing of Pete and Pat is not an end to what they began with the Ice Bucket Challenge, but a signal that the fight they began is now up to us. Thank you for being part of our effort to serve people with ALS and allow them to live their lives to the fullest. With your help we will continue that work here in our community in 2021, and beyond.

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