For Frates family, ALS drug approval a cause for 'joy'

Oct. 3—BEVERLY — When Nancy and John Frates returned to their car after taking part in Endicott College's sixth annual Ice Bucket Challenge on Thursday, they got a text they've been awaiting for years.

The U.S. Food and Drug Administration had approved the drug Relyvrio for the treatment of ALS, the disease that took the life of their son Pete Frates in 2019 at the age of 34. The research that led to the drug's development was funded in part through money raised by the Ice Bucket Challenge, the event that was inspired by Frates and raised over $115 million for research into ALS.

The fact that news of the drug's approval came just minutes after Pete's parents had taken part in an Ice Bucket Challenge event in their hometown of Beverly, outside a dorm named in their son's honor, was both fitting and emotional. Nancy Frates described her reaction as one of "joy" and "hope."

"Pete and his fellow ALS warriors all gathered in heaven right now, they're the ones that pushed that along," she said on Friday. "They're the ones that said, 'Enough is enough.'"

Relyvrio is designed to slow progression of amyotrophic lateral sclerosis, or ALS, a neurodegenerative disease that leads to paralysis and death. People with ALS who received the drug in a trial lived about 10 months longer than those who received a placebo, according to the ALS Association.

"I would have given anything for Pete to have been told at his diagnosis, 'Pete, there is a drug that has potential of extending your life 10 to 12 months,'" Nancy Frates said. "I would've slept better that night."

Nancy Frates said she and her husband spoke with the father of Pat Quinn, who co-founded the Ice Bucket Challenge along with Pete Frates, after news broke about the FDA's approval.

"We talked about how proud we are as parents," she said. "We had to lose our boys. They persevered because they wanted to make it better for the next person."

Nancy Frates said Amylyx Pharmaceuticals, the Cambridge-based company that developed Relyviro, was given a $2.3 million grant from Ice Bucket Challenge money through the ALS Association to kick-start development of the drug. She said that grant sparked further investment that allowed the company to continue its research and trial.

Overall, the ALS Association has spent more than $127 million on ALS research since the Ice Bucket Challenge began in 2014. Nancy Frates said there was only one approved ALS drug from the time Lou Gehrig, for whom the disease was named, was diagnosed in 1939 until 2017. Since then, two more drugs have been approved.

"It gives you a sense of the (ALS) community and how we're feeling today," Nancy Frates said.

Frates also pointed out another Beverly connection that is playing a vital role in the search for a cure. She said more than 80 drugs are being studied at the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital. The center was funded by a $40 million donation from Healey, a former Beverly resident who died of ALS in 2020, and his company, which is based in Beverly.

Nancy Frates noted that while Relyvrio has been shown to delay ALS' progression, it is not a cure. But it is a significant step forward in a movement that owes much of the credit to the inspiration provided by her son.

"In 2012 when Pete was diagnosed there was very limited progress," she said. "Look how far we've come in 10 years."

Staff Writer Paul Leighton can be reached at 978-338-2535, by email at pleighton@salemnews.com, or on Twitter at @heardinbeverly.

Staff Writer Paul Leighton can be reached at 978-338-2535, by email at pleighton@salemnews.com, or on Twitter at @heardinbeverly.