July 26, 2016; Guardian
When the ALS ice bucket challenge was introduced in 2014, no one thought it would eventually bring in $100 million over 30 days from many people with only the vaguest idea about what the disease was. It was a cultural phenomenon.
Time sounded dismissive in its coverage:
Most of its participants…didn’t mention the disease at all. The chance to jump on the latest trend was an end in itself. In fact, the challenge’s structure seems almost inherently offensive to those touched by ALS.
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Out of that money raised, the ALS Association fully funded some ambitious research projects like Project MinE, which is now being credited with having identified a new gene associated with the disease, which, in turn, could lead to new treatments. This study, published on Monday in the journal Nature Genetics, involved more than 80 researchers in 11 countries.
Even though the newly identified gene, NEK1, is only associated with three percent of ALS cases, it’s big news. “It’s very exciting because it shows everyone who contributed to the ice bucket challenge that their donation had an impact on the research,” said Brian Frederick, executive vice-president of communications and development at the ALS Association. “The work that Project MinE is doing is really important, and the discovery of this new gene will help us better understand ALS.”
Frederick said, “It helps us understand what’s triggering this and can help us better find a treatment.” But, he cautioned, “it’s still very early in our understanding of this particular gene, and we still have a ways to go with understanding ALS generally.”
This is humbling. The sum of $100 million and the freakishly successful fad that produced it seemed to come out of thin air, but the real, serious work that has ensued in its wake is slow, time-intensive, and very incremental—as it must be.—Ruth McCambridge