ALS Association

[7] The research led to the discovery of five new genes connected to ALS:[6][8][7] According to Hemali Phatnani, director of the Center for Genomics of Neurodegenerative Disease at the New York Genome Center, funds raised from the Challenge led to the creation of one of the largest resources of ALS whole genome-sequencing data, which has been shared with partners around the world.

[15] In September 2020, the New England Journal of Medicine reported that a new drug combination, AMX0035, was safe and effective at slowing the progression of ALS in a clinically meaningful way.

This bill eliminates the arbitrary five-month waiting period formerly required before people living with ALS could draw on their Social Security Disability Insurance benefits.

To participate, individuals were challenged to pour a bucket of ice water over themselves and/or donate money to ALS research and care.

Individuals such as former President George W. Bush, Bill Gates, Taylor Swift, Benedict Cumberbatch, LeBron James, and Martha Stewart dumped ice water on their heads to raise money to fight ALS.

[24] In early 2018, a patient group called the "Terminally Persistent" coalition criticized the ALS Association for not spending the $115 million earned from the Ice Bucket Challenge more readily on research.