Pete Frates was a star baseball player at Boston College when he was diagnosed with ALS at age 27 in March 2012. Rather than withdrawing from public life, he chose to use his diagnosis as a catalyst for action.
In 2014, Frates — by then unable to move or speak and communicating via eye-tracking technology — co-created and promoted the ALS Ice Bucket Challenge. The challenge, which asked people to dump a bucket of ice water on their head and donate to ALS research, became one of the most successful viral charity campaigns in history.
The Ice Bucket Challenge raised over $220 million worldwide for ALS research. The ALS Association used the funds to identify NEK1 as a major ALS gene — a discovery that would likely have taken years longer without the funding surge. It also funded the development of treatments including tofersen, which later received FDA approval for a genetic form of ALS.
Frates lived with ALS for seven and a half years — significantly longer than the typical 2–5 year prognosis — dying on December 9, 2019 at age 34. His legacy is immeasurable: he transformed the funding landscape for ALS research and gave the disease a face for a new generation.