Things will get better: ALS Ice Bucket Challenge mascot's mom
A year after the ALS Ice Bucket Challenge went viral, its mascot, Pete Frates, is on a ventilator. But Pete's mother, the indomitable Nancy Frates, is confident things will get better.HT48HRS_Special Updated: Sep 18, 2015 14:00 IST
It's 7am on the other side of the phone line, in Boston. Nancy insists the time isn't inconvenient at all. She has a meeting in 45 minutes, and "a really chock-full day". Then, tomorrow, she flies to Mumbai. She's one of the speakers at the EEMAX Global Conclave. Her subject: a viral phenomenon that saw ice-cold water being poured on some of the most famous heads in the world. From politicians to CEOs to actors, singers, and entire sports teams, the ALS Ice Bucket Challenge was a rage.
As a concept, the Ice Bucket Challenge wasn't new. It had been used in the past for other causes, especially in the sporting circuit. But it took Pete Frates (then 29), a former university-level baseball player who was diagnosed with ALS in 2012, and Pat Quinn, another patient based in New York, to spark the social media phenomenon.
"When Pete was diagnosed, ALS was a little-known disease. He knew that, to build awareness, you need a good story. Pat contacted Pete, and it was on July 27 that Pete got his network [friends and supporters, including the baseball community] in Boston to take the challenge," Nancy says. Within a few days, social media feeds were flooded with ice water. From George W Bush to Justin Timberlake to Mark Zuckerberg and Bill Gates, everyone was dumping cold water on themselves, to help spread the word.
That was August, 2014. By then, Pete could no longer move. "With his eyes (using something called eye-tracker technology), he was writing emails, tagging people, and strategising," Nancy says.
Now, exactly a year later, Pete is on a ventilator. "Unfortunately, even as we speak, Pete is back in the hospital. His diaphragm no longer works, and he decided to go on ventilator because he's just 30, and has a one-year-old child. It [a ventilator] can lead to pneumonia, and that's what he's currently fighting," Nancy says. "Just when you think it [ALS] can't take anything else away, it does." There's a quiver in her voice, but it's only fleeting.
Over the last three years, Nancy has been a relentless force in her own right, in her efforts to spread the word on ALS. She travels around the world, speaking at TED conferences and other events - about her son, the Frates family's efforts, and the Ice Bucket Challenge.
It started at an ALS symposium in October, 2012, when Nancy raised her hand from the audience, and stunned a room full of experts by asking why there had been no progress in finding a cure. "After that, I was invited as a panellist, to another symposium in New York. That's how it started," Nancy says. Now, Nancy not only speaks at events, she's also on the national board of trustees of the ALS Association (USA). And that means she's kept track of the expenditure of the staggering amount of money that was raised - $115 million in the US, and $220 million, overall, around the world.
Pete Frates (then 29), a former university-level baseball player who was diagnosed with ALS in 2012
This August, she was also an active part of Ice Bucket 2.0. It returned with the hashtag #EveryAugustUntilACure, and saw Justin Bieber, Donald Trump (who was critical of it last year), Microsoft CEO Satya Nadella and Daredevil TV show actor Charlie Cox, among others, take it. But the amount of ice, traction and money were all low. As per a CNBC report, $500,000 had been raised till August 25.
"The 2014 movement was historic. It was strategic, and we also had luck," Nancy says. "This year, we didn't expect it to reach the same financial height. But the idea is to keep the awareness going. Those who work with ALS will tell you how it used to take 45 minutes to explain to people what ALS is. Now it's immediate."
But even at its height last year, some critics slammed the challenge as 'slacktivism', alleging celebrities of jumping on to a fad, and choosing to get drenched rather than donating money. Nancy is, of course, aware of this analysis. "Facts don't lie. The $220 million that came in proves there was awareness. And if people with 2 to 3 million followers did it to be on a bandwagon, we'll take it," she says.
There's still no cure for ALS. But last month, researchers at John Hopkins School of Medicine made a significant breakthrough. And they credit the Ice Bucket money for speeding up their research. For Nancy, and others with affected relatives, it's news like this that motivates them to fight. As for Nancy, she says, "Three years ago, the agenda was to save my son. Now, after meeting many, many patients, it's broader in scope." There's also the hope that "tomorrow, they might find something. It's that hope that drives me."