scorecardThe mom of a man behind the Ice Bucket Challenge says she's proud a new drug has been approved to treat ALS
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The mom of a man behind the Ice Bucket Challenge says she's proud a new drug has been approved to treat ALS

Jane Ridley   

The mom of a man behind the Ice Bucket Challenge says she's proud a new drug has been approved to treat ALS
LifeScience5 min read
  • Nancy Frates' son Pete helped make the Ice Bucket Challenge go viral five years before he died.
  • Some of the $220 million in donations helped pay for the development of a new drug to treat ALS.

When Nancy Frates heard that the US Food and Drug Administration had approved a promising new drug for ALS — the fatal motor neuron disease that took the life of Pete, her son, she felt elation and sorrow.

"I was very happy, but I also had mixed emotions," Frates told Insider. "I just wished it had been available in time for my son," she added.

The 64-year-old said she took comfort from knowing that Pete, one of two men widely credited with popularizing the Ice Bucket Challenge — the viral stunt that raised more than $220 million for groups such as The ALS Association — had played a vital role in the achievement.

Scientists were able to develop the drug, in part, after receiving a percentage of the proceeds from the Ice Bucket Challenge.

Frates said she would have done anything to try to prolong the life of her son

The FDA approved the drug, called Relyvrio, on September 29 after analyzing the findings of a clinical study. The results showed that ALS patients in the 137-person study who took the drug had experienced "a slower rate of decline" than those taking a placebo.

Amylyx Pharmaceuticals, the company behind the drug, has said it could extend the lives of people with ALS by five to six months, or more.

Frates told Insider she'd have given anything for Pete to have lived longer, even for a short amount of time.

"I would have loved to have had him with me for another 10 months to a year," Frates said.

Frates said she and her husband, Jim, sat with Pete when he received the diagnosis. He was 27.

"We didn't know what we were going to hear," Frates said of the visit to his neurologist in 2012. Her son, a former captain of the Boston College baseball team, had told them only about some pain in his wrist, she said.

She said that when she heard that her son had ALS, also known as Lou Gehrig's disease, she "didn't know what it was."

"Like any parent would, I asked the doctor, 'Well, what do we do now?'" Frates said.

"He said, 'I'm sorry to tell you, but we've had virtually no progress in the fight against this disease. There's no treatment, there's no cure. And the prognosis is three to five years.'"

Pete Frates wasted no time in raising money for research into ALS

She said her son didn't pause for breath. He immediately called a family meeting consisting of his parents, his two siblings, and his then-girlfriend, Julie, whom he married the following year.

"Pete said, 'There will be no wallowing, there will be no whining, and we're going to get to work.'" Frates said.

It turned out that Pete had gone online and matched some of his symptoms — such as extreme exhaustion and muscle stiffness — with those of ALS. He'd been staggered by the lack of funding into researching the disease and by the lack of public awareness.

"He said, 'It's unacceptable,'" Frates said. "Then he said, 'We're going to change the trajectory of this disease.'"

She said he was never motivated by self-interest. "It was about how we could work together so that no other family had to go through this," Frates said, adding that her son had always been a "servant leader."

Pete went on to communicate through a computer that responded to his eye movements

Frates said her son "never broke down."

"He didn't want us to break, and he had a very spiritual side to him," she continued. "He felt it was the reason he'd be put on earth."

Pete became paralyzed and nonverbal within 2 ½ years of his diagnosis — he used eye-tracking software to type on his laptop — but he continued efforts to spread awareness.

"He said that if you could get people to open up their hearts to us, you could educate them about this disease and they would open up their wallets," Frates said.

Pete promoted his fundraising and advocacy work across the internet. "Pete knew he was representing a new demographic," Frates said. "He wanted to show that it doesn't matter what your economic situation is, where you live, how old you are, or how much love you have in your life.

"He'd say: 'None of that matters. This disease wins. And we're changing that.'"

In 2014, Frates said, Pete and his friend Pat Quinn, a 30-year-old New Yorker with ALS, saw the potential of the Ice Bucket Challenge. The fundraising stunt — in which someone dumps ice water on their head or gets another person to do it for them — had already been tried by a few local US charities.

Frates said her son 'got us on the path' to securing an effective treatment — and possibly even a cure — for ALS

Frates said Quinn and her son took the concept to the global level to benefit The ALS Association. "They took hold of it," Frates said about their artful strategy on social media. "They knew this was it."

Clips went viral of people performing the challenge. As many as 17 million people were estimated to have taken part across the world. Public figures including Kim Kardashian, Dolly Parton, and Steven Spielberg were shown getting drenched. Frates said Pete got the biggest kick out of watching the video of Bill Gates.

"Pete had told us, 'I'm going to get this disease in front of philanthropists, such as Bill Gates,'" Frates said. "And he did."

Frates said that Pete, who died in 2019 at the age of 34, was aware of the scientific progress that the Ice Bucket Challenge had paid for. "The doctors would fill him in," she said, adding, "He saw things happening in the ALS space when he was alive."

She went on, "He got us on the path and heading in the right direction when there was no path before."

She said that if her son were still alive, he would have been "joyful" about the approval of Relyvrio and "immediately" have signed the paperwork in the hopes of getting the new treatment.

"He would have looked at it as another step forward before getting back to work," said Frates, a trustee of Endicott College in Massachussets which, in 2016, named one of its buildings after Pete.

Meanwhile, Frates said she saw Pete whenever she looked at his 8-year-old daughter, Lucy. "It's almost like her dad just lives inside of her," she said.

As for the future, Frates said the family would continue efforts to cure ALS in memory of Pete.

"I am blessed and proud to be Pete Frates' mom," she said. "I feel that I was chosen for that."