Pete Frates’ Ice Bucket Challenge lives on strong 10 years later, advancing ALS research
A drug aimed at prolonging survival with ALS and another that slows the progression of the relentlessly progressive and fatal neurodegenerative disorder are moving forward to discussions with the Food and Drug Administration.
The development is just the latest contribution that doctors and supporters say wouldn’t have been possible without Pete Frates and his ice bucket challenge which went viral, raising millions towards ALS research.
With the sun beaming high above Fenway Park, and as temperature sizzled, hundreds of family members, friends and supporters turned out to celebrate the 10th anniversary of Frates’ appeal, the “multiplier effect” of which is still felt today.
That’s according to Frates’ doctor, Merit Cudkowicz, director of the Healey & AMG Center for ALS at Mass General Hospital.
Cudkowicz, during Thursday’s celebration, highlighted the advances in the field of ALS research that have sprung from Frates’ challenge for people to dump ice water on their heads and donate to an ALS organization.
Since the Healey & AMG Center opened in 2019, the FDA has approved the first gene therapy for a form of ALS that prevents the disease from progressing and allows the patient to get better, Cudkowicz said.
The center has also launched a new way of developing treatment for people with ALS in which multiple drugs are tested at a time, cutting development time in half and opening more access for people in need, she said.
Two of the first five drugs tested within the past three years have had “positive results,” one prolonging survival and the other slowing progression, and are moving forward to discussions with the FDA, Cudkowicz said.
The doctor reflected on meeting Frates at Mass General and how he asked about how much money it would take to cure ALS and make an impact.
“Without a lot of thought, I said a billion, and he said ‘We’re going to get that for you, and we’re going to do it together.’ And he did it,” Cudkowicz said.
“It’s hard to believe that dumping a bucket of ice over your head was going to change how we thought about ALS,” she added, “but that single act did more to raise awareness for ALS than any other effort. It catalyzed amazing research advances.”
The August 2014 call from Frates, a Beverly native who starred on the Boston College baseball team, Anthony Senerchia and Pat Quinn, two other men who have died from ALS, inspired 17 million people around the world to participate in their challenge.
The quest raised more than $220 million by the end of 2014, with the money going into studies that have led to more than an additional $1 billion in research funding, according to the ALS Association of America.
Pete’s mother Nancy Frates has become a staunch advocate for ALS research, following in her son’s footsteps. She called on people to reflect on their first ice bucket drop 10 years ago, share memories of them completing the challenge on social media, and contribute in any way possible.
Frates died at age 34 in December 2019, but his “powerful spirit” is still alive, his mother said.
“You brought results,” Nancy Frates told supporters at Fenway. “But as Pete would say ‘We can have fun today, but the job isn’t done and let’s get back to work tomorrow.’ We need to continue in his honor to get to his ultimate goal of a cure.”
Gov. Maura Healey, BC football legend Matt Ryan, Bruins Hall of Famer Ray Borque, Red Sox President Sam Kennedy and others gathered for the event to show how much Frates means to the region.
“There’s no one we should look up to more than Pete Frates and what he means to Boston, to our championship culture and tradition, and coming together and being strong,” Kennedy said.
Josh Kraft, Sam Kennedy, Gov. Maura Healey, Pete Frates’ father John Frates, Matt Ryan, and Ray Bourque dump buckets over their heads during the 10th anniversary of Ice Bucket Challenge at Fenway Park. (Nancy Lane/Boston Herald)