The Ice Bucket Challenge by Casey Sherman

Author:Casey Sherman
Language: eng
Format: epub
Publisher: University Press of New England

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HEROES EMERGE

Pete poured himself into his new role as a passionate and inspirational proponent for ALS funding and research. It was a role he had been preparing for his entire life. Like a candidate on the political stump, Pete spent weeks and months reaching out to friends and strangers, asking them to join his campaign—a campaign to save lives. He was tireless in his pursuit of a cure, despite bouts with fatigue that stole his energy and a near-total collapse of his muscles that made it difficult to stand and virtually impossible to walk under his own strength. Still, he felt blessed. He met with his old friend and coach Mike Gambino, who had recently returned to Boston College to lead its baseball program.

“Mike, I really just think I have a great opportunity here,” Pete told the coach. “I’m young; I’m in good shape. I’m way younger than the average person with ALS. I think I can have a platform here. I’m gonna be the one to get people talking about this and gets us moving toward a cure.”

Pete sat down with local newspaper reporters and reached out successfully to national media outlets to educate them on the plight of ALS patients like him and the lack of funding for researchers committed to discovering a cure. During an appearance on the Charlie Rose Show, the host asked Pete how he looked at the future, knowing that his prognosis was dire.

“My outlook on the future is very unclear,” he replied. “I had plans of grandeur of having a family, the white picket fence, things of that nature. Right now, that’s not certain for me.”

Pete’s honesty and his efforts got the attention of advocacy groups across the nation. One group, the ALS Therapy Development Institute, which touts itself as the world’s foremost drug discovery center focused solely on ALS, presented Pete with its major award in 2012. The award was named for Steve Heywood, an architect from Newton, Massachusetts, who was diagnosed with ALS in 1998, when he was just twenty nine years old. Heywood would become the subject of a popular book, titled My Brother’s Keeper: A Story of the Edge of Medicine, written by Jonathan Weiner, a recipient of the Pulitzer Prize. Like Pete, Heywood used his affliction to raise awareness for the disease. Heywood lived with ALS for eight years. His death in 2006 was the result of an accident caused by a detached respirator. His brother James, a mechanical engineer at MIT, had founded the ALS Therapy Development Institute in his honor.

Steve Heywood had carried the torch for his fellow patients and their families for nearly a decade. That torch has now been passed to Pete. He accepted the Heywood Award during a gala at the Sheraton Hotel in Boston. Dressed in a maroon Boston College polo shirt, he walked slowly to the podium, with the help of his dad and Julie, to enthusiastic applause.

“I always am so impressed and marvel at the people who go to work

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