CHICAGO — Maybe you thought it was silly — and certainly cold! But the amount of dollars that poured in from the ALS Ice Bucket Challenge will give you chills! And now we have a clear understanding of the critical impact all that funding has had for scientists — including some in Chicago.

It was wildly popular on social media. The challenge, launched in 2014, took off on the web as celebrities and regular citizens stepped up — and under — an icy bucket of water.

And it all paid off.

Samantha Courter is with the ALS Association Greater Chicago Chapter.

“Seventeen million people participated in the ice bucket challenge. It generated $117 million for the ALS Association nationally. And worldwide it’s predicted to be $220 million,” she said.

The money helped scientists identify 12 genes that play a critical role in ALS.

Jake Mann, PhD is an ALS researcher with Northwestern Medicine.

“It helped in a huge way,” he said.

One of those genes, called NEK-1, is the focus of Dr Evangelos Kiskinis’ lab at Northwestern University.

“Since that happened, we along with other groups, have been trying to understand how mutations in this particular gene cause the disease itself,” Kiskinis said.

What his team discovered when the NEK-1 gene mutates, two critical structures in the motor neurons that help us speak, walk and talk, malfunction, cause the cells to degenerate and die. First, axons, the cable-like connectors that send electrical signals from one cell to another, collapse. At the same time, the operational role of the cell’s nucleus is disrupted. It’s no longer able to import cargo, or receive genetic information from our DNA.

“And we’re particularly excited about this discovery because it links NEK-1 associated ALS with other genetic forms of ALS,” Kiskinis said.

And the discovery opens the door to potential treatments, specific therapies that can target the cell’s destruction.

“There are classes of molecules that we know can impact and restore the function of these particular pathways,” Kiskinis said. “So what we’ll be doing next is utilizing such molecules to address whether they will have any restorative capacity in the context of ALS.”

Donations from the Ice Bucket Challenge increased funding for ALS research by 187 percent, supporting 500 different research projects around the world.

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