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Pete Frates, Who Used His ALS Diagnosis To Help Make The Ice Bucket Challenge Go Viral, Has Died

"He was a noble fighter who inspired us all to use our talents and strengths in the service of others," his family said.

Posted on December 9, 2019, at 3:34 p.m. ET

Andrew Buckley / The Courier via AP

Pete Frates, the man who helped make the Ice Bucket Challenge fundraiser go viral, died Monday after having ALS for years. He was 34.

Frates, a former Boston College baseball player, was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, in 2012. Millions of dollars were raised for research on the disease as part of the viral social media fundraiser he helped propel with his own Ice Bucket Challenge video in July 2014.

In a statement announcing his death, Frates' family described him as "an inspiration" to people around the world.

Bill Sikes / AP

Pete Frates

"A natural born leader and the ultimate teammate, Pete was a role model for all, especially young athletes, who looked up to him for his bravery and unwavering positive spirit in the face of adversity," his family said. "He was a noble fighter who inspired us all to use our talents and strengths in the service of others."

The challenge, which the ALS Association has credited with raising money that led to the discovery of a gene that researchers say commonly contributes to ALS, was first connected to the disease in July 2014 when Chris Kennedy, a professional golfer, dumped a bucket of ice water on his head and named an ALS charity to support because his cousin's husband, Anthony Senerchia Jr., had the disease, according to Time magazine.

A couple of weeks later, the challenge came to the attention of Frates, who had a particularly large social media following and was very involved in the ALS community. In the days after Frates posted his own video on Facebook, using the hashtag #StrikeOutALS, the campaign took off.

Frates' family said despite his diagnosis, he never complained about the disease, which causes people to lose muscle control and become paralyzed, and often leads to death. Instead, his family said, he saw it as an opportunity to give hope to other patients and their families.

"In his lifetime, he was determined to change the trajectory of a disease that had no treatment or cure," his family said. "In August of 2014, the historic movement pioneered social media fundraising and garnered donations globally that resulted in better access to ALS care, genetic discoveries, treatments and, someday, a cure. He was a beacon of hope for all."

A BuzzFeed News investigation, in partnership with the International Consortium of Investigative Journalists, based on thousands of documents the government didn't want you to see.