Pete Frates knew challenging people to dump buckets of ice water over their heads would eventually make a difference in the world of ALS research.
Nine years later, the former Boston College baseball star’s appeal that went viral has certainly accomplished its mission.
The Ice Bucket Challenge, which took social media by storm in the summer of 2014, raised more than $220 million. And just last September, the Food and Drug Administration approved the first drug funded through some of those donations.
The drug, Relyvrio, is designed to slow the disease by protecting nerve cells in the brain and spinal cord destroyed by the relentlessly progressive and fatal neurodegenerative disorder.
Nancy Frates is not surprised the cause her son started has led to some groundbreaking developments that have advanced research toward curing ALS.
“It’s called the ripple effect. Once somebody gives somebody money others will follow, and that’s exactly what has happened in our world. The best part about that movement is we have results,” Nancy Frates told the Herald outside the State House, where she and dozens of others celebrated the ninth anniversary of the Ice Bucket Challenge on Wednesday.
Frates beamed while speaking about how she is hopeful that even larger developments are near. She pointed to how Mass General’s Healey Center has more than 80 drugs and treatments that are being put through clinical trials at a rapid pace.
The Peter Frates Foundation is on pace to have a record year in terms of supporting ALS patients and their families with the overwhelming costs of home health care. Its end-year projection is $330,000 distributed via 67 grants spread across 33 states.
His widow, Julie Frates, attended Wednesday’s celebration and highlighted how while there’s been tremendous progress, the fight against ALS is continuing. She is advocating for protected rights of all people living with disabilities and their caregivers to continue to engage in hybrid or remote work post-pandemic.
“It’s still so surreal nearly 10 years later that this all has happened, and that he was able to raise this awareness and fundraising with the ice bucket challenge,” she told the Herald. “That, I think, will never be a normal thought for any of us to really grasp.”
