When Nancy Frates heard the word “ALS” in 2012, her world collapsed around her. Her son, Pete Frates, a vibrant and athletic 27-year-old, had just been diagnosed. But while Nancy was overcome with shock, Pete—a natural leader—quickly set the tone for his fight.
“This is my new team,” Pete announced to his family, ready to face this new challenge head-on.
Before ALS entered the Frates family’s life, Pete was the kind of person who led by example. As a Division I baseball player at Boston College, he was the guy who lifted others up. “He always included everyone,” Nancy said. “Pete's motto was always, ‘We have to be the best we can be so that we can leave it better for the next person.’” It was this leadership, kindness, and compassion that made him who he was—and these same traits shaped his journey with ALS.
Despite the devastating news, Pete didn’t wallow. Instead, he quickly turned his focus toward advocacy and raising awareness about the disease. Nancy remembers the first night after the diagnosis vividly: “He told us all very succinctly that this probably wasn’t going to be in time for him, but it was going to be for the next person.” Pete’s determination became the driving force behind what would eventually become the ALS Ice Bucket Challenge, the social media phenomenon that would change the course of ALS forever.
In the summer of 2014, the ALS Ice Bucket Challenge became a viral sensation. Still, Nancy humbly acknowledges that the challenge wasn’t something Pete or the Frates family dreamed up. Though the concept had been circulating online for months, early on it wasn’t really associated with one cause. But Pete and his friend Pat Quinn recognized its potential to impact the fight against ALS. Through their leadership, the challenge exploded, raising over $220 million globally and revolutionizing ALS advocacy.
For Nancy, the greatest impact wasn’t just the funds raised, but the awareness generated. “Before the Ice Bucket Challenge, no one was talking about ALS. Afterward, everyone had a connection to the disease,” she said.
Pete passed away in December 2019, seven years after his diagnosis. True to how he lived his life, his legacy is one of love and leadership. “When people ask how the Ice Bucket Challenge happened, I always say it was a life well led,” Nancy reflects. Even today, the movement’s success is a testament to Pete’s ability to inspire and connect with others.
Beyond raising funds, the challenge demonstrated the power of social media in philanthropy, paving the way for many other worthy causes to raise important funds through small donations.
It has now been 10 years since the Challenge, leading to progress in ALS research that was almost unthinkable before. “In 2012, we left the diagnosis room with no hope,” Nancy remembered. “Today, there’s light at the end of the tunnel.” Advances in treatments, including gene therapies, are bringing real hope to families facing ALS. “We’re going in the right direction, and we’re going to get there,” Nancy said with optimism.
Nancy also realizes that the impact of the Ice Bucket Challenge was about more than just finding a cure—but also about improving the quality of life for people living with ALS right now. It’s about giving everyone, everywhere, the tools and resources they need to navigate this devastating disease each day. "The way you're going to get through this is to open up your arms and open up your hearts to all the love that’s going to come your way," Nancy said.
Even today, Nancy remains involved in the fight against ALS, and encourages everyone to join her through financial support, advocacy, and participation in community events like the Walk to Defeat ALS®. “The hope is there and it's real,” she said.
For Nancy, her family’s journey with ALS has been one of heartbreak, but also one of immense love and purpose, and Pete’s leadership and resilience continue to inspire millions. “Today is better than yesterday for those diagnosed with ALS, and tomorrow will be even better,” Nancy said.
Her son’s legacy is a beacon of hope, reminding us all to keep fighting until a cure is found.
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