The Major ALS Breakthrough Funded by the Ice Bucket Challenge

Photo: Getty Images/ Heidi Klum administers the ALS Ice Bucket Challenge to host Tim Gunn at the Project Runway Season 13 Finale Show last year.

When the ALS Ice Bucket Challenge took off last summer, many worried it was nothing but social media mayhem masquerading as doing good. But just one year later, we now have the freezing frenzy to thank for a significant breakthrough, scientists say.

The new discovery has to do with a protein called TDP-43, which is found in clumps in the brains of 97% of patients with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. Scientists have known about the presence of TDP-43 in ALS for more than a decade, but they didn’t know whether these clumps were a cause or effect of the disease or what they did, according to the new paper from the journal Science. Now they know that TDP-43 helps instruct nerve cells how to make important proteins; when it bunches up inside those cells it starts a cascade of events that ultimately kills brain or spinal cord cells.

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The TL;DR version? “TDP-43 doesn’t do its job in 97% of all ALS cases. Scientists didn’t really know its function—now we do. We also show that it’s something that can be fixed!” Jonathan Ling, the first author of the paper, wrote in a Science Ask Me Anything on Reddit.

More importantly, Ling said: “If we are able to mimic TDP-43’s function in the human neurons of ALS patients, there’s a good chance that we could slow down progression of the disease! And that’s what we’re putting all our efforts into right now.”

Last year’s challenge spawned 17 million videos and raised $115 million for ALS research in the United States at its peak. The ALS Association announced that the money from last year’s challenge has helped to triple the amount that it spends on research each year. Ling’s research was funded partly by donations gathered via the Ice Bucket Challenge.

“I remember reading a lot of stories about people complaining that the ice bucket challenge was a waste and that scientists weren’t using the money to do research,” Ling added in his AMA. “I assure you that this is absolutely false. All of your donations have been amazingly helpful, and we have been working tirelessly to find a cure.”

Good work, social media!

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