Beyond her kindhearted and amiable outer shell, she stood with a robust posture and spoke with an unwavering sense of resolve. There was something undoubtedly special about her presence—she carried herself with an aura of resilience, for she bore the heartbreak that accompanied her beloved son’s diagnosis with ALS.
On a misty Thursday night at Boston College, Nancy Frates stood still—in front of a sizable crowd—in the Murray Function Room of Yawkey Center.
“It was a lot of trauma, a lot of worry, and a lot of tears,” she said, describing her family’s initial reaction to her son’s diagnosis. She didn’t need to mince her words—the passion that pervaded her very voice spoke volumes about the distress that accompanied Pete Frates’ battle with ALS.
When she began to describe her son’s reaction to his diagnosis, though, her eyes lit up. “Alright people,” she recounted Pete saying. “There will be no wallowing. There will be no whining.” Pete continued, “What an opportunity we’ve been given to change the world.”
Unbelievable to say the least—but this was just the beginning for Nancy and Pete Frates.
The moment that Pete uttered those inspirational words, the Frates family knew it had one impossible goal—to cure ALS. But then again, anything that hasn’t been done seems impossible until it suddenly isn’t.
Strategically, the Frates family had to first focus on raising awareness for the rare but horrific disease. “We felt that if people could know our story, they could open their hearts and then their wallets,” said Nancy Frates.
Pete wasn’t alone in his battle with ALS. He was mentored by Steve Gleason, a former New Orleans Saint who was diagnosed with ALS in 2011, one year before Pete. Pat Quinn, a native of Yonkers, New York and an Iona Prep graduate, was also diagnosed with ALS in 2013.
Frates had a distinctive relationship with Quinn, as they both forged an impenetrable sense of solidarity in sharing the trials and tribulations that accompanied such a ruinous and rare disease. But, their friendship was also special because it led to the most impactful period of time in of both of their lives—a period that was first sparked when Pat Quinn exclaimed to Pete Frates, “I think we’ve got it.”
What they had was something they named the Ice Bucket Challenge (IBC for short). The premise was simple—you dumped a bucket of ice water on your head and nominated three friends to do the same.
“To get this thing going was to get it on as many newsfeeds as possible,” Nancy Frates said. But even she admitted that the Ice Bucket Challenge surpassed Pete and Pat’s wildest expectations.
Matt Ryan, one of Pete’s friends at Boston College, was one of the first to do to ALS Ice Bucket Challenge—he elected to nominate NFL teammates Roddy White, Julio Jones, and Harry Douglas. And soon, celebrities, athletes, musicians, politicians, and just about everybody else in between caught the Ice Bucket Challenge fever. It spread like wildfire.
Beaming with motherly pride, Nancy Frates spoke volumes about the Ice Bucket Challenge. “More than 17 million IBC videos [were] viewed by more than 440 million [unique] people more than 10 billion times,” Frates read from the projector.
More than 150 different countries posted Ice Bucket Challenge videos. Worldwide, the challenge raised an enormous $220 million dollars in six weeks. According to Google’s 2014 statistics, the very first result in typing the word “donations” into Google was “donate to ALS.” Similarly, the first result in prompting the search engine with “what is…” was “what is ALS?”
How about that for awareness?
The challenge, Nancy explained, worked. And aside from its obvious and immediate successes, the challenge has had long-lasting effects.
“We’re attracting new talent into the neurology and ALS fields,” said Nancy Frates. “We’ve had early diagnosis,” and there is “immense renewed hope in this community.”
The Ice Bucket Challenge, which resurfaced this past summer, spawned the hashtag #EveryAugustUntilACure.
As Nancy Frates wound down her talk, many audience members caught a man confined to a motorized wheelchair in their peripheral vision. The man, edging closer and closer to stage, was Pete Frates.
Unable to move, speak, or even swallow, Frates approached the stage and shortly thereafter managed to generate a message with his eye-tracking technology—“Be hardworking. Be genuine. Be great. Be men and women for others. Beat Irish.”
After the initial wave of laughter that followed Pete’s subtle jab at Notre Dame, Frates received a booming and reverent standing ovation. Though he could not move, his lively eyes, dancing around the room, showed everyone that Pete Frates was very much alive.
Earlier in her speech, Nancy Frates proffered a poignant comment on those battling ALS.“They are not going to die from ALS," she said. "They are living with ALS.”
As everybody looked up at Pete Frates, they saw a man with an unbroken spirit—a man who profoundly cherishes his life. Will someone like this ever fold in the face of ALS? No—Pete, too, isn’t dying from ALS. He’s simply living with it.