From Stunt to Science: How Ice Buckets Changed the Face of ALS

by | Aug 10, 2016 | Health Featured

It seems like just yesterday we were watching video after video of celebrities and their loved ones dumping buckets of ice water over their heads in the name of trying to raise money for ALS research. The long running stunt drew some major fire with many calling it a “publicity stunt” for the celebrities and leaders involved. Even so, two years later, it seems like it worked.

Originally a stunt challenge from nobody knows exactly where, the idea was to challenge people to dump extremely cold water over their heads or pledge a donation to the cause of the challenger’s choice (typically cancer). It was adopted by Pete Frates, Pat Quinn and Corey Griffin for ALS and went viral after personalities from the Golf Channel did a live on-air ice bucket challenge. The rest is history.

As the New Yorker points out:

“Silly though the Ice Bucket Challenge may seem now, it had far-reaching effects. It raised a reported two hundred and twenty million dollars worldwide for A.L.S. organizations; in just eight weeks, the American A.L.S. Association received thirteen times as much in contributions as what it had in the whole of the preceding year. Public awareness rose: the challenge was the fifth most popular Google search for all of 2014. Brian Frederick, the vice-president for communications and development at the A.L.S. Association, told me, “The challenge suddenly made a lot of people who probably didn’t even know who Lou Gehrig was aware of the disease. It really changed the face of A.L.S. forever.”

With that influx of cash and a tripling of the ALS’s funding budget, research has been booming. The increase in funding for ALS research has also been beneficial for the entire science-service industry. For example, with the uptick in research, the greater the need for a company like Pacific BioMaterial Management, Inc. to provide freezers and safe storage for laboratories. And for US Centrifuges, which manufactures the centrifuges that are essential for stem cell research.

Most importantly, however, is that real progress has been made in the field of ALS–advancements have been made in its diagnosis, treatment, and in the care of patients who suffer with it.

One of the most exciting advancements in this field, which the ALS Association credits the Ice Bucket Challenge for funding, is the identification of a new ALS gene, NEK1. In a recent press release, the ALS Association states:

“Understanding NEK1’s role in disease will provide an important new target for therapy development. The ALS Associations is currently funding Drs. John Landers and Catherine Lutz, Jackson Laboratories, to develop novel mouse models to better understand the consequences of the loss of the protein’s function for the ALS disease process. They will provide rapid access to these models for the broader ALS research community as soon as they are generated. These tools are important for ALS drug development.”

It is important to understand that, while the identification of NEK1 is important, it isn’t truly a breakthrough–there are around 30 genes associated with ALS–but according to a spokesperson for the ALS Association, in addition to widening the subset of people who will be able to be successfully treated for ALS, researchers are more energized than they were pre-challenge. Equally important, the people who suffer from the disease (and their loved ones) feel a real sense of hope that the condition is something they might be able to overcome.

It has been two years since the original Ice Bucket Challenge. To keep the momentum up, the ALS Association are parlaying the success of the Ice Bucket Challenge into a new project: Every Drop Adds Up.

Every Drop Adds Up encourages people to set up their own fundraising portals to encourage friends and loved ones to donate to the cause. The pages are set up through the ALS Associated and payments are processed via One Dollar Difference, the ALS Association’s own special platform. The site also helps volunteers organize fundraising activities like charity walks and connects them with local chapters of the ALS Association, support groups, advocacy resources, etc.

It isn’t quite as catchy or likely to go as viral as the Ice Bucket Challenge but it has already proven to be a great follow up to the original fundraising project.

The biggest takeaway that most seem to have gotten from the Ice Bucket Challenge, though, is that even a goofy idea can catch on and be harnessed to help change the world. After all, the original challenge was just to get people to douse themselves in ice water to raise awareness of the disease. Nobody foresaw that it would raise hundreds of millions of dollars or how much good those dollars would do.


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