Aunts on Facebook loooved the ice bucket challenge! – were pouring buckets of water over each other’s heads to raise money for ALS research.
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Despite being heavily criticized for water waste and dismissed as a form of “slacktivism” (lazy activism), many saw the Ice Bucket Challenge as a campaign driven by a passionate community that capitalized on peer-to-peer fundraising and activism.
For patients of the progressive disease, nerve cells in the brain and spinal cord gradually deteriorate. “People with ALS lose the ability to initiate and control muscle movement, which leads to total paralysis and death, usually within two to five years of diagnosis”, wrote the ALS Association. The ALS Association’s investment in the project wouldn’t have been possible without the Ice Bucket Challenge, the association said in a press release.
There are approximately 300 people living with ALS in Connecticut Dr. Felice estimates. The discovery is unique in that the project that found the gene is led by someone who has ALS.
But one of these viral pop culture moments is even more relevant today.
Earlier this week, the ALS Association announced that the largest study of inherited ALS has identified a new gene, NEK1, “which now ranks among the most common genes that contribute to the disease, providing scientists with another potential target for therapy development”.
Dr. Felice says genetic ALS impacts approximately 10 percent of those afflicted with the disease and that the ice bucket challenge had consequences in CT.
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Now, the Association is asking us to come together once again to help put an end to the disease once and for all. We can still make a difference, so let’s do this!
