FDA approves new treatment for ALS thanks in part to viral social media challenge


SACRAMENTO, Calif. — The FDA has approved a new treatment called Relyviro to slow the progression of Amyotrophic Lateral Sclerosis or ALS. 

The disease attacks motor functioning. It kills cells leading to trouble walking, talking and even swallowing. It has a grim prognosis with only 10% of patients expected to survive after 5 years of living with the illness. 

After two trials, this new drug is showing prevention in the death of those cells, in turn slowing progression. The 2014 Ice Bucket Challenge was a significant part of the funding for this research. The challenge went viral on social media where participants would pour a bucket of ice water over their heads and encourage others to donate to the cause. ABC10 Health Expert Dr. Payal Kohli said this could be the first time a social media campaign has led to such a breakthrough. 

“The idea of crowdsourcing research, especially for conditions that are very difficult to treat or, you know, can impact our loved ones in such a fundamental way, it’s a really novel idea. I think it’s really cool because there’s always a challenge when it comes to medical research of finding the funding,” Kohli said. “Now my caution to this would be with any kind of crowdsourcing and fundraising, we want to make sure there’s close regulation as to where that money is going, how it’s applied towards that research, because all these people clearly, you know, are putting their heart and soul into not just doing the ice bucket challenge, but donating money as well, thinking that it’s for ALS research. So you want to make sure that it’s really allocated in the right way going towards the right things.”

The Federal Trade Commission offers tools to look deeper into the charities you might choose to donate to. You can use that tool on its website here

Kohli said sometimes funding goes toward pharmaceutical companies, which is the opposite of the Ice Bucket Challenge’s idea. She said she thinks this crowdsourcing idea could be a work to fund public health and education initiatives as well.



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