That Pete Frates had a gift was evident in the way the world responded to his recent passing. Everyone — from Boston College to the worldwide ALS community to the millions of regular folk who part in the Ice Bucket Challenge — mourned him as one of their own.
Those who loved him say he was the same guy before he got sick as he was after he was diagnosed with amyotrophic lateral sclerosis. He had a way of making you feel important — that you were the smartest classmate, the most valuable teammate, the favorite aunt. That you were needed. In turn, you would do anything for the guy.
That became evident in March of 2012, when he was first diagnosed with ALS. Also known as Lou Gehrig’s disease, ALS attacks nerve cells in the brain and spinal cord, eventually leading to the loss of muscle movement and the ability to speak, eat, move and breathe. There is no cure, a fact that seemed to irritate Frates more than scare him.
“What an amazing opportunity we now have to change the world,” he told his family upon learning of his diagnosis. “I’m going to change the face of this unacceptable situation of ALS. We’re going to move the needle and raise money to fight.”
To say he succeeded is an understatement.
In 2014, Frates helped turn the Ice Bucket Challenge from a modest viral hit into a worldwide sensation. That August, it seemed like everyone — from your cousin to your neighbor to professional athletes to not-yet president Donald Trump — was dumping buckets of ice water over their head to raise awareness of the disease. With the dumping of ice came donations — more than $200 million over the past five years.
That money has made a difference. It has funded research into drug treatment, fueled gene silencing trials and backed the development of technology for people living with ALS. New genes — five in all — that contribute to the disease have been discovered over the past five years.
“It was fun, it was silly, it was viral, but it was so much more than that,” Calaneet Balas, president and CEO of the ALS Association, said at an event in Boston earlier this year. “This made ALS change forever ... We are going to see a cure.”
Yet Frates was more than the Ice Bucket Challenge. With his parents, John and Nancy, he worked to raise awareness of the toll the disease takes on families. With specialized nursing and other treatments, Pete Frates’ medical bills often topped $80,000 to $90,000 a month. In-home care is covered by many insurance providers. But not all of them.
“It can literally bankrupt families,” Lynn Anderson, executive director of Massachusetts chapter of the ALS Association, said in 2017 in unveiling the Pete Frates Home Health Initiative, which helps as many as five Bay State patients a year whose insurance won’t cover skilled care at home.
None of that happens without the kid from Beverly with the knack for making friends and inspiring people to act.
Frates was the featured speaker at The Salem News Student-Athlete Award banquet in 2013, a little more than a year after being diagnosed with ALS.
He spent most of the evening speaking not of himself, but of his teammates, both on the playing field and in the fight against his disease. Many, he said, were the same people.
“Your teammates, they’re not just people you’re with on the field or in school,” he told a rapt crowd of student-athletes and their loved ones. “They’re people that will be there your entire life. There are guys I hadn’t seen in 10 years that come to help us now, and it’s like we saw each other yesterday. Be good good to your teammates. They’re like your family.”
It was that approach he brought to the fight against ALS, and his efforts brought the world closer to a cure. It will be up to his teammates — both the ones he knew and strangers with ice buckets — to carry on his work. The next opportunity will be the Plunge 4 Pete fundraiser at Gloucester’s Good Harbor Beach on Dec. 28, which would have been his 35th birthday.
It is no easy thing to carry on a movement after the death of its icon.
To that end, we’ll give Frates the last word, calling on the advice he gave to a roomful of promising student athletes a half-dozen years ago.
“Don’t be afraid to be a leader, and don’t be afraid to be great. Your parents, and your friends and teammates, they think you’re something special. That’s because you are.”