Remember the ice bucket challenge? It just funded an ALS breakthrough
The ALS Association says money raised by viral charity challenge, dismissed as ‘slacktivism’ by many, has helped identify a new gene associated with the disease
It is often easy to dismiss viral charity campaigns as “slacktivism”, which lacks in real-world impact (we never did catch the warlord Joseph Kony, after all) but a breakthrough discovery bankrolled by 2014’s ALS ice bucket challenge may give the lie to that cynicism.
The ice bucket challenge was a phenomenon in the summer of 2014 in which people dunked a bucket of iced water over their heads in order to solicit donations before nominating others to do the same.
The campaign raised more than $100m in a 30-day period, and was able to fully fund a number of research projects. One of these was Project MinE, a large data-driven initiative funded by the ALS Association through ice bucket challenge donations, as well as donations from the organization’s Georgia and New York chapters. The project’s researchers announced on Monday that they have identified a new gene associated with the disease, which experts say could lead to new treatment possibilities.
Amyotrophic Lateral Sclerosis, also known ALS or Lou Gehrig’s Disease, is a neurological disorder in which the motor neurons that control muscle function slowly die. The disease can be either sporadic or inherited, and in either case there is currently no cure.
“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 newly discovered gene, NEK1, is only associated with 3% of ALS cases, but it is present in both inherited and sporadic forms of the disease, which researchers say gives them a new target for the development of possible treatments. Project MinE has been working to sequence the genomes of 15,000 people with the disease, and the discovery, which was described in a paper published on Monday in the journal Nature Genetics, involved more than 80 researchers in 11 countries.
The discovery was significant, Frederick said, “because it helps us understand what’s triggering this and can help us better find a treatment,” though he added that “it’s still very early in our understanding of this particular gene, and we still have a ways to go with understanding ALS generally.”
It’s really frustrating to think of people who treated the ALS Ice Bucket Challenge like some trendy meme with no value outside of being hip, and criticizing it because “it’s a waste of clean water when there are people in third world countries dying of thirst!”
Did these folks not realize the challenge was started to raise awareness for a life-threatening disease? The idea of dumping cold water on yourself comes from one of the symptoms of ALS, which is feeling like getting hit with a shock of ice-cold water. And not only that, but the IBC was able to raise money for a potential cure. (I believe, though right now I can’t provide links)
But no, let’s just jump on anything trendy without looking into the meaning behind it and guilt-trip people for utilizing resources available to them in a shallow attempt at virtue-signaling.