In 2014, the ALS Ice Bucket Challenge took social media by storm. The challenge consisted of a participant being doused by a bucket of ice water poured over their head. While the challenge was intended to raise awareness and funds for Amyotrophic lateral sclerosis (ALS) research, some questioned just how much of an effect such a fad could have.
The ALS Association reported last week that $2.2 million of funds that were raised from the Ice Bucket Challenge were invested into the development of a new drug that just received Food and Drug Administration (FDA) approval. The drug, previously referred to as AMX0035, is now called Relyvrio and was developed by Amylyx Pharmaceuticals.
"This approval provides another important treatment option for ALS, a life-threatening disease that currently has no cure," Dr. Billy Dunn, director of the Office of Neuroscience in the FDA's Center for Drug Evaluation and Research, said in a statement.
The ALS Association credits the Ice Bucket Challenge with being a significant reason why the drug was able to be developed and tested. “We thank the millions of people who donated, participated, and enabled us to invest in promising therapies like AMX0035 that will immediately help people living with ALS,” said Calaneet Balas, president and CEO of the ALS Association. “This is a victory for the entire ALS community, which came together to advocate for early approval of AMX0035. We still have a lot of work to do to cure ALS, but this new treatment is a significant step in that fight.”
The new drug is not a cure for the fatal neurodegenerative disease also known as Lou Gehrig’s disease, after the legendary baseball player who died from ALS in 1941. However, the drug does slow down the effects of ALS.
“The Ice Bucket Challenge has been transformative in the field of ALS genomics. We built one of the largest resources of ALS whole genome-sequencing data. This resource has been shared with partners all over the world. It has accelerated the pace of ALS gene discovery and has led to the largest ALS sequencing study in the United States,” said Hemali Phatnani, director of the Center for Genomics of Neurodegenerative Disease at the New York Genome Center.
Over $115 million was raised from the Ice Bucket Challenge. The ALS Association said it is funding 130 research projects in 12 different countries, as well as 40 potential treatments that are in development, reports NPR.