How could a 27-year-old launch a campaign that became a movement, creating an avalanche of 17 million videos viewed by 440 million people more than 10 billion times in a mere 3 months? Now, in the world of influencers, you may be nonplussed by this accomplishment but, in 2014, the Ice Bucket challenge viral video movement nearly broke the Facebook platform.
I had the honor of hearing Nancy Frates, Pete Frates mother, speak at MoForum 2025. Pete Frates was diagnosed with ALS in 2012 at the age of 27. At that time, the illness was not well-known, most recalling it as Lou Gehrig’s disease. Lou Gehrig, a major league baseball player, died from the disease in 1941.
Nancy recalled the moment sitting in the doctor’s office and learning that her son had ALS. That the disease was incurable. And, the life expectancy was 3 to 5 years. Heartbreaking. That evening, as she and the rest of the family were wrapping their heads around the news, Pete shared with the family that he viewed this as an opportunity to change the world, to change the trajectory of this disease. This was his mission, his purpose.
Not only did the Ice Bucket Challenge become one of the first viral movements, it raised $250,000,000 and, through this online campaign, changed the way we give. In the 10 years since:Don’t
- ALS awareness has risen significantly
- The Frates Foundation is not only funding research but also support for families
- Drugs are on the market that stem the progress of the disease for certain patients
- NIH funding increased by a multiple
Sadly, Pete passed away in 2019. His legacy, though, stands firmly in his stead. He has absolutely changed the trajectory of ALS.
Pete’s story offers several leadership lessons for all of us:
- Have a clear and compelling vision
- Pete’s vision was to turn ALS from a death sentence to a livable disease.
- See and seize the opportunities as they present themselves.
- The Ice Bucket Challenge had been on the internet for months before Pete happened to see it but, in that instant, he recognized how he could leverage it as the basis of his campaign.
- Catalyze your community.
- Pete’s request was simple and clear. He asked each of his family members to take the challenge, post it to FaceBook, and challenge 3 of their friends. In this way, the initiative spiderwebbed quickly through networks.
- Be the leader you are looking for.
- Pete was 27 years old. He was faced with a disease that would quickly strip him of his ability to move and speak. He could well have focused on himself — on having fun, on doing what he could with the time he had — rather, he chose to use his voice to make a difference.
James MacGregor Burns, thought to have coined the term ‘transformational leader,’ defines it as those who inspire followers to aim for and achieve ambitious goals. I believe that Pete Frates fits that definition. I would encourage you, if you don’t know his full story, to look it up and think about how his example inspires you to step more fully into your own leadership.
