Five Years Later: The Ice Bucket Challenge Cofounders’ New Challenge for the Public

The ALS Association and two of the three cofounders of the popular 2014 viral campaign are now calling on supporters to help them finish fighting ALS in a new campaign. Much progress has been made.

People in the nonprofit world still talk about the Ice Bucket Challenge, one of the most impressive social media-driven fundraising campaigns of all time.

The ALS Association, of course, is also still talking about the popular campaign, which marks its fifth anniversary this summer. But given that milestone, the association wants to make clear that the nature of the challenge has changed.

It’s not about dumping a cold bucket of ice water on your head anymore. This year, the challenge is about ending amyotrophic lateral sclerosis—the disease that started the viral campaign in the first place.

This week, the association, along with challenge cofounders Pete Frates and Pat Quinn—both of whom have ALS—launched a campaign called Challenge Me, which encourages people to challenge themselves to take whatever steps necessary to stop the debilitating neurodegenerative disease.

Frates and Quinn know a thing or two about challenge, as they live with it daily—as did their friend Anthony Senerchia, a fellow Ice Bucket Challenge cofounder who died in 2017. In a news release, Quinn emphasized that the campaign reflected a willingness to keep fighting that he hoped supporters shared.

As we reflect on the incredible progress that has been made in the past five years, we challenge you to stay with us as we approach the light.

“My first thought upon waking every morning is, I’m winning today,” Quinn said in the release. “The Challenge Me campaign excites me because it captures the attitude I have adopted as my survival strategy. Millions of people changed the fight against ALS forever and we need their help finishing that fight.”

The Ice Bucket Challenge did a lot of good for the ALS community, with $115 million donated in a single year. Since then, $89 million has been spent on efforts to fight the disease and has helped uncover genes related to the disease. Work has greatly expanded in recent years, with numerous drug trials and observational trials started, and a widely increased amount of research around the disease.

On top of the assistance on the research front, the funding also helped pay for 29 new ALS Certified Treatment Centers of Excellence, 20 new Recognized Treatment Centers, and new technology that makes it easier for those who have lost their voice from the disease to communicate—including Quinn, who directly benefited from the technology created through the Project Revoice program.

The new campaign’s website highlights these efforts and the good they’ve done—along with the impact they continue to have.

The comments from both Quinn and Frates’ mother, Nancy, speak to an end goal, rather than a disease that’s expected to be around decades from now—and it’s something that Nancy Frates credits to the Ice Bucket Challenge.

“When Pete was diagnosed, we had no idea where the tunnel to a treatment and cure existed. Today, because of your goodness in accepting our challenge, not only are we in the tunnel, we can see the light at the end of it,” Nancy Frates said in the release. “As we reflect on the incredible progress that has been made in the past five years, we challenge you to stay with us as we approach the light.”

The association will roll out events related to the new campaign over the next several months.

Pat Quinn, an Ice Bucket Challenge cofounder, shown in a promotional video for "Challenge Me." (YouTube screenshot)

Ernie Smith

By Ernie Smith

Ernie Smith is a former senior editor for Associations Now. MORE

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