FDA approves first ALS treatment funded by Ice Bucket Challenge

WASHINGTON — On Thursday, the U.S. Food and Drug Administration approved Relyvrio, a new treatment for people living with ALS. It is the first drug funded by money from the Ice Bucket Challenge.

In 2014, many people accepted the Ice Bucket Challenge. There were millions of clips of people dumping buckets of ice water over their heads in the name of fundraising for ALS. Relyvrio is the result of that effort.

In 2014, Sunny Brous, along with millions of others, shared video of her Ice Bucket Challenge.

“I’ve already donated,” she said on the video clip.

Six months later, Brous herself was diagnosed with ALS. She was 27. Brous said the disease, which affects the nerve cells that control movement, impacts every single day of her life.

“It’s slowed me down a lot and I stopped working a few years ago, so that was a big blow to who I always dreamed that I would be,” she said.

Calaneet Balas, president and CEO of the ALS Association said that there are currently very few therapeutics to help people like Brous. Studies show Relyvrio slows the death of the motor nerves.

“I always say money drives progress,” Balas told us. “When we have money for research, we learn things and then we can actually add to that.”

This process wasn’t a straight line. Earlier this year, an FDA advisory committee initially did not support the drug, but at a second meeting in September, after input from the ALS community and some new data, the committee said it should be approved.

In their decision, the FDA said there is some uncertainty about the effectiveness in a trial this small. They continued, “However, given the serious and life-threatening nature of ALS and the substantial unmet need, this level of uncertainty is acceptable in this instance.”

Now, the drug manufacturer is working to release the treatment as soon as possible.

“This was a diagnosis that you were given and you were sent home to die,” Brous said. “And now all (of a) sudden with this influx of awareness and funding ... it’s not a ‘go home and die’ disease; it’s a ‘let’s fight this and fight it together.’”

To be clear, this treatment doesn’t cure ALS.

“We all hope that will happen one day, whether it’s this drug or other compounds that will come in,” Balas added.

Click here to learn more about Sunny Brous’ story.

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