Play Live Radio
Next Up:
0:00 0:00
Available On Air Stations

Funds Raised in Ice Bucket Challenge Lead to New ALS Discovery Juez

What started as a viral internet sensation two summers ago has led to a promising new discovery.

Scientists have identified NEK1, one of the most common genes that contribute to ALS, or Lou Gehrig's Disease.

"Everybody is over the moon. This is one of the most significant genetic advancements to come out in any recent time with ALS, " said Liz Krisanda, executive director of the ALS Association of Upstate New York. “It’s giving a lot of hope to our patients and their families and giving scientists a direction in which to go.” It's hoped that the discovery will allow scientists to target therapies for ALS patients.

The research was funded by money raised in the "Ice Bucket Challenge”, a social media phenomenon in the summer of 2014 that had millions of people sharing videos of themselves being doused with ice water.

The more than $100 million that was raised is being used for a number of studies. One new drug is in clinical trials. Another medication is expected to reach the trail phase in 2017.  Krisanda said there is currently just one drug that is approved for ALS patients. It only improves survival by a couple of months.

"What we're finding is there are more genetic implications than we realized previously and so we're learning a lot more about this disease because of the gene research that is going on," she said.

Krisanda said the Ice Bucket Challenge not only raised research dollars, it put ALS “on the map”, and led more people to discover the ALS Association and its chapters throughout the country.  The Upstate chapter serves about 250 families in the 48 counties outside of New York City.