The Ice Bucket Challenge, Casey Sherman & Dave Wedge. Lebanon, NH: ForeEdge, 2017.
Summary: The story behind the “Ice Bucket Challenge” and Pete Frates, who has lived five years with ALS and has led a determined fight to raise funding needed for research to end this disease.
Did you do the “Ice Bucket Challenge” back in the summer of 2014? I did, and for fun, you can see this video, posted on my Facebook page, as I doused myself with ice water. According to The Ice Bucket Challenge, we were part of the biggest thing to ever happen on Facebook and my video was one of 17 million. We were joined by celebrities from Oprah Winfrey to George W. Bush to Bill Gates, who did one of the most elaborate challenges. I probably made a donation to ALS research at the time, but I don’t think I fully understood the story behind all those challenges until I read this book.
The book is the story of Pete Frates, an athlete who played three sports in college and loved baseball. Number 3 for the Boston College Eagles, his fierce competitiveness led to a league championship victory in Fenway Park. After college he met the love of his life, Julie and continued to play city league ball until that fateful night when he was hit by a pitch on his left wrist. He’d shaken other things like this off, but his wrist and left arm continued to bother him. He noticed he was having difficulty buttoning shirts and both hands and arms wouldn’t respond, and he tired easily. Internet searches of his symptoms raised suspicions of ALS (Amyotrophic Lateral Sclerosis, also know as “Lou Gehrig’s Disease, after the famed Yankee player who died from it). A battery of tests led to a meeting where his doctor broke the news that he indeed had this disease, for which there was no cure, and which killed most patients within two to five years. This was in 2012, when Frates was 26.
The book recounts the night of the diagnosis as the Frates family had gathered for dinner, silent as if Pete had already died:
“Pete Frates the captain, Pete Frates the leader, had to step up to the plate. ‘There will be no wallowing, people,’ he announced. ‘We are not looking back. We’re moving forward.
Pete’s voice was forceful. He spoke with authority. His parents and siblings all sat straight up in their chairs. A bolt of lightning had just illuminated the room.
‘What an amazing opportunity we know have to change the world,’ Pete continued. ‘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.’ Pete explained that he was going to get out in front of this disease like no one had done before. ‘I’m going to convince philanthropists like Bill Gates to get involved.”
Team Frate Train was born. Pete had learned that ALS researchers struggled to get sufficient funding for their efforts. Only a small number (roughly 30,000), are diagnosed with ALS each year, and most are silenced within a few years due to deterioration of nerves and muscles, and dead within five years. The rest of the book is how Pete’s family mobilized, built contacts and a social media platform, and made the cause of ALS research funding their own, even as Pete’s body rapidly deteriorated. It is a story of Julie, known from childhood for her fearlessness, standing beside the man she had come to love as they married and had a child.
And it is the story of the “Ice Bucket Challenge,” the tipping point event that led to accomplishing Pete’s vision. Interestingly, another ALS patient did the first challenge, tagged a friend of Pete’s on Facebook, who in turn tagged Pete. When Pete saw the videos, he realized that this was the means he’d been looking for. Leveraging his social media platform, he convinced numerous friends to do the challenge. The challenge went viral. Eventually, this effort would raise $220 million for ALS research.
It’s a hard book to read at the same time. The authors describe the ravages of the disease and how it has destroyed the body, though not the spirit, of this athletic young man. We learn of the physical indignities, the costs of care, the hard family conversations and frayed tempers and the ever present dangers of infection or pneumonia, that will probably claim Frates life someday if a cure is not found. One such pneumonia scare resulted in rumors of his death in July of 2017. We also glimpse the lighter moments, as Pete goes to a Boston Bruins game in his custom van, Andrew his brother driving, blaring heavy metal and sweet moments as his infant daughter nestles with him in his bed when he can do little more than be with her.
At the time of the writing of this review, he is still alive (with tweets from @PeteFrates during the current week) and he not only continues the fight for ALS funding but persists in the hope that he will live to see his daughter grow up. The book notes that we spent 4 trillion dollars in our war in Afghanistan, but only $300 million in government funding for all medical research each year. The hope of this book is not only that people will find personal inspiration from Pete’s life, but join him in “moving the needle” in the fight against ALS.
[This post honors the memory of Pete Frates who died in 2019. It is not a clearing house for comments about alternative therapies. Discussions of therapies should occur with one’s health care professional. Any such comments will be deleted and considered spam.]
Disclosure of Material Connection: I received this book free from the publisher via LibraryThing’s Early Reviewers Program in exchange for an honest review. The opinions I have expressed are my own.