ALS Ice Bucket Challenge Leads to New Research

Participants and supporters of the Ice Bucket Challenge, which became a viral trend on social media in the summer of 2014, have raised approximately $220 million for ALS research as of December 2014. This summer, the organization reported that the surge in donations has helped them reach a major breakthrough.

When Chris Kennedy accepted his friend’s nomination to take the Ice Bucket Challenge in July 2014, he was likely unaware of what was to come. While he did not invent the challenge – which had originally been created to garner support for the charity of each participant’s choosing – he was the first known participant to choose to donate to the ALS Association. He did the challenge in honor of a relative suffering from amyotrophic lateral sclerosis (ALS), a neurological disease that weakens the motor neurons that regulate muscle movement and results in a loss of control over these voluntary actions.

Within days, the Ice Bucket Challenge rapidly spread across the United States and around the world, as participants accepted the challenge and asked others to both donate money to the ALS Association and to dump a bucket of ice water on their head in support of the cause. Social media websites were flooded with endless streams of videos of people taking the challenge, including public figures and celebrities, and by the end of August 2014, more than 17 million Ice Bucket Challenge videos had been posted to Facebook.

Though some critics have referred to the viral trend as “social media ‘slacktivism,’” and others have pointed out the injuries and several fatalities that occurred as results of the challenge, the ALS Association garnered support from 2.1 million new donors as of the end of August 2014. Along with existing donors, they raised $220 million globally, and more than $115 million went to the ALS Association in Washington, D.C.

The funds likely provided researchers with the resources they needed to make a recent breakthrough. In August 2015, Jonathan Ling and Philip Wong, along with other Johns Hopkins researchers, “identified a previously unknown function of an important protein related to … ALS.” Upon examining the protein TDP-43, which does not operate correctly in those who have ALS, they showed that the protein is supposed to “bind to and repress cryptic exons,” and they “found an abnormal increase in cryptic exon expression in the brains of people with ALS.”

“With any luck this could lead to possibly a cure or really just slowing down this terrible disease,” Ling said.

According to their website, the ALS Association has pledged to allocate $77 million to ALS research and to donate approximately $33.5 million to various grants and projects to support specific research efforts.

  Ling said, “All of [the] donations have been amazingly helpful, and we have been working tirelessly to find a cure. With the amount of money that the Ice Bucket Challenge raised, I feel that there’s a lot of hope and optimism now for real, meaningful therapies.”

Sources: alsa.org, cbsnews.com, newsroom.fb.com, time.com