The ALS Ice Bucket Challenge Helped Discover The Gene That Causes ALS

(NYDN) – People thought it was silly two summers ago, but the Ice Bucket Challenge Internet sensation actually gathered enough funds to make an important breakthrough in ALS research. The University of Massachusetts Medical School’s Project MinE recently discovered the gene that is responsible for ALS. Project MinE scientists were able to research this gene with help from the ALS Association, which donated $1 million from the Ice Bucket Challenge. The identified gene is NEK1, which its variants could provide clues to understanding and potentially treating familial and sporadic ALS. “The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world,” Bernard Muller, founder of Project MinE and ALS patient, said in a statement. “This transatlantic collaboration supports our global gene hunt to identify the genetic drivers of ALS.”

I’m actually going to take issue with the first line of this story, the “people thought it was silly two summers ago…” part. Because I really don’t think anyone did. Sure, it’s the internet and there will always be detractors and haters, but I think the vast, vast, vast majority of people were all aboard the Ice Bucket Challenge train. That’s why it was so successful. Everyone from your buddy, to your aunt, to world famous celebrities participated instead of laughing at it. I’m sure there were a few people with Twitter handles like “@istillpissthebedandhatefun” who “thought it was silly,” but I very rarely, if ever, came across people thinking it was stupid.

Nonetheless, there are plenty of hashtags and social media movements that do have loud cries of “this is pointless” that echo around them, and I think this is a pretty good lesson that it does, in fact, work. I’m not above it, I’ve laughed at and poked fun of plenty of social media activists or people who think a hashtag will solve all the world’s problems and this will definitely give me some pause next time I think to do that. It does do something. It does raise awareness and generate very important funds.

Of course, we have our man Pete Frates and the whole Frates family to thank for this. It’s getting hard to think of new words to describe Pete, because he’s in the news for doing great things so often, but he’s really one of the most incredible dudes I’ve ever had the chance to get to know. I won’t speak for everyone but I know I would never in a million years have the stones to do what he’s done. Pete put himself out there, made himself the face of a disease, and started the movement that has the potential to end ALS all together. That’s AMAZING. Pete Frates changed the fucking world and I couldn’t be more proud to have met a guy like that.