Aug. 11, 2014 at 11:15 PM ET
When 29-year-old Pete Frates learned he had ALS two years ago, he decided to approach it the same way he tackled everything.
“When he was first diagnosed [he said] ‘Look we are going to go after this thing,’” says John Frates, Pete’s dad. “Pete has always been a leader. He was a captain of all his sports [teams]. It was always about his teammates getting better … it was never about himself.”
Pete embraced that same selflessness when it came to ALS, participating in fundraisers and events as an active member of the Massachusetts chapter of the ALS Association. A former Division 1 baseball player with Boston College, Pete befriended others with the disease and gave them advice as to what to expect.
A few weeks ago, his family started the Ice Bucket Challenge. For those living in a cave and unaware of what it is, the challenge is simple. People dump buckets of ice water on their heads and call someone else out on social media to do the same within 24 hours. If a person refuses, he or she must donate money to an ALS organization. Everyone from the Kennedys to Matt Lauer and Martha Stewart to the Boston Mayor Marty Walsh has taken on the challenge. And the cold water is splashing a lot of money into ALS research (most who take the challenge end up donating money anyway, it seems).
“Did we expect it to explode like this? No, of course not. We were hoping for exposure,” says John Frates. “We’re not that clever or smart that we could have thought that it was a [fundraiser].”
From July 29 to August 11 of 2013, the ALS Association received $22,000 in donations; from July 29 to August 11 of this year, it received $1.35 million thanks to the challenge. Of that, $1 million came in over the weekend.
“It’s unbelievable,” says Carrie Martin Munk, spokesperson for the ALS Association. “It’s just amazing that people continue to respond. It is a fun and simple thing for people to do to raise money and awareness.”
The Frates are glad that the challenge has helped teach people about ALS.
“We appreciate everyone who ever does it,” says John Frates. “When the ice hits you, even the toughest guy becomes a puddle.”
Pete watches as many of the Ice Bucket Challenges as he can, chuckling along with the videos. Seeing him happy brings his family joy. Pete can no longer speak, which commonly occurs as the disease progresses.
ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a progressive, neurodegenerative disease that targets the nerve cells in the brain and spine. Damage to the nerves causes muscle weakness and eventual loss of all muscle control. About 30,000 Americans live with ALS; most people only live between two and five years after diagnosis. Men seem to have ALS slightly more frequently than women, but ALS affects both genders and at any age. About 90 percent of the cases are random, meaning there is no genetic basis for it and doctors are unsure of its cause. Currently, there is only one drug approved by the FDA to treat ALS, but it only extends life by a few months.
“How can this disease not get the exposure it needs and the funding it needs? We’re talking about 75 years since Lou Gehrig’s death … [there’s still] no effective treatment and certainly no cure,” says John Frates.
Pete can no longer control his muscles and is confined to a wheelchair, which he controls with head movements. He can’t swallow and doctors are monitoring his breathing; they expect he will soon be unable to breathe without assistance. When this happens, Pete will receive a tracheotomy and he will essentially be on life support.
“He always felt that there is a higher calling for him and [raising awareness for ALS] is it,” says John.
Martin Munk says the Ice Bucket Challenge has helped raised awareness in amazing ways.
“When you are dealing with a disease that only half of the American public is really aware of, [the publicity] value is incredible, really immeasurable,” she says.
Now that the Ice Bucket Challenge has reached full trend mode, people are getting creative with it. Here are some fun interpretations of the challenge:
A former teammate of Pete’s, Matt Harvey of the NY Mets, really immerses himself in the challenge:
This guy says he does nothing small (we believe him):
Boston Bruins Tory Krug gets the freshest ice (he was one of the first celebrities to take the challenge):
Actor Geoff Stults accessorizes with a zebra inner tube:
“The Fault in Our Stars” actor Ansel Elgort does it shirtless:
The Kennedys do it as a family: