Researchers Funded by Ice Bucket Challenge Discover ALS Gene

Fundraising can be large part of propelling an organization’s mission forward. And for the ALS Association, the Ice Bucket Challenge has done that as the funds it raised helped researchers discover a new ALS gene.

In 2014, social media feeds were filled with people, including celebrities, pouring ice cold water over their heads for a viral fundraiser. Two years later the ALS Association’s Ice Bucket Challenge has produced more than videos; researchers funded by the campaign have discovered a new ALS gene.

The gene labeled NEK1 is one of the top genes that contributes to ALS, a disease that attacks nerve cells in the brain and spinal cord and leads to paralysis. Because the gene has been identified, researchers can begin developing treatments that would target NEK1, which is found in both genetic and sporadic cases.

“It was a very important breakthrough for us, one of which would’ve taken a lot longer had we not had the Ice Bucket Challenge and not been able to put those additional dollars to it,” ASLA President and CEO Barbara Newhouse said.

The Ice Bucket Challenge, which encouraged people to post videos of themselves throwing a bucket of ice water over their head or donate to an ALS charity, helped ALSA put extra funds toward tracking the disease and finding a cure.

“It has allowed us to fund a lot of new research that has given great promise and great hope that in the not-too-distant future we will have a treatment and other therapies to change ALS from a disease that takes lives to hopefully a chronic illness,” Newhouse said.

This particular discovery resulted from one of the projects the campaign funded, Project MinE, which was a global effort started by a person living with ALS to sequence 15,000 genomes from people with the disease. In October 2014, funds from the Challenge let ALSA set up the project’s U.S. arm.

To Newhouse, the Challenge and the research it has funded show the power of fundraising. “It’s not just what keeps the lights on,” she said. “It’s what keeps mission in our organization moving forward and, for that matter, in any organization moving forward.”

And the Challenge has not only progressed ALSA’s mission through money but also through building momentum for future fundraising and increasing public awareness around ALS.

Last summer, ALSA rebooted the Challenge with the #EveryAugustUntilACure campaign. And this year the organization adds to the movement again with the Every Drop Adds Up effort, which both honors the Challenge and allows for flexibility. While some people will continue pouring buckets of water over their heads, ALSA wants participants to know they can raise money in other ways—and that’s just as important.

This campaign is about helping “people understand that every penny, every dime or dollar adds up, and just helps us move the cause forward so that we can actually have more breakthroughs like NEK1,” Newhouse said.


Alex Beall

By Alex Beall

Alex Beall is an associate editor for Associations Now with a masters in journalism and a penchant for Instagram. MORE

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