On July 15, 2014, a small gesture of support by professional golfer Chris Kennedy on behalf of a family member living with ALS, went unnoticed by all but a few of his social media followers. Calling out his cousin Jeanette Senerchia of Pelham, NY, in support of her husband Anthony, Kennedy dumped a bucket of ice water on his head and challenged his network to either follow suit or make a donation to fight ALS. It was not until months later that the significance of his Facebook post would be credited as the start of the largest movement in medical history: The ALS Ice Bucket Challenge.
Chris Kennedy could not have foreseen the impact of his post. Senerchia accepted his challenge, posted her video and in turn, challenged her network to get drenched or make a donation to The ALS Association. Pat Quinn, a young man newly diagnosed with ALS in Yonkers, NY, took the challenge and passed the torch to Pete Frates of Beverly, MA, a former Boston College baseball player and team captain who was diagnosed with ALS at age 27. Frates’ involvement led to participation by Boston’s athletic community, where it immediately caught fire among the city’s professional athletes. The Red Sox, Bruins and Patriot athletes who took the challenge called on competing teams and celebrities to get involved. Before the summer was through, nearly every major sports team and celebrity A-listers such as Oprah, Jimmy Fallon, and Lady Gaga were posting their own ALS Ice Bucket Challenge social posts.
Yesterday in Boston, hundreds gathered to commemorate the five-year anniversary of the first Ice Bucket Challenge and to celebrate the three men with ALS who are credited as the “founders” of the iconic movement: Senerchia, who died in 2017, and Quinn and Frates who continue to defy ALS every day. As part of the celebration, Massachusetts Governor Charlie Baker, ESPN commentator Jonathan “Boog” Sciambi (who also has a personal affiliation with the disease), the Quinn and Frates families, Facebook executive Emily Dalton Smith and players from the Boston Bruins joined The ALS Association to honor all of those of fight or have fought with courage, to celebrate the scientific breakthroughs made possible through the ALS Ice Bucket Challenge, and to ask the community to help us achieve our vision of a world without ALS.
The Challenge was an organic movement, initiated by people impacted by a disease that has long lived in the shadows, confounding researchers and cruelly cutting short the lives of vibrant men and women. Created and carried by the community, the ALS Ice Bucket Challenge generated 17 million social media posts and raised $200 million dollars worldwide, significantly accelerating ALS research, doubling the size of The ALS Association’s clinical care network, and funding the development of assistive technology and other care services for people living with the disease.
But there is still no cure for ALS, and there are no treatments that offer appreciable life extending options.
While we have made great progress in our fight, there is still road ahead of us and our work to raise awareness and funds continues. As we reflect on where we have come in the five years since the Challenge and rally forward to find a cure, we continue to draw inspiration from the people living with this disease who wake up every day and defiantly rise to the challenges ALS presents.
To commemorate the fifth anniversary of the ALS Ice Bucket Challenge, we’re asking for your help to finish what was started in 2014, when the whole country came together to support people with ALS and the search for a cure. You can start by reposting your original ALS Ice Bucket Challenge video – or take a new challenge – and invite your friends to do the same. Together, we can end ALS forever.
The Challenge Me campaign picks up where the ALS Ice Bucket Challenge left off. This time, the ALS community is challenging everyone to do anything and everything they can to cure ALS. Click here to learn more.