How Did A Simple Challenge Become A Worldwide Phenomenon?

Transcript

GUY RAZ, HOST:

On the show today, Amateur Hour, stories and ideas from people who are put into situations where they have no idea what they're doing.

I'm assuming you had never run an international movement in your life.

NANCY FRATES: (Laughter) No.

RAZ: This is Nancy Frates. And the story of how she came to be the voice and the face of a worldwide movement starts with her son Pete, who was a star athlete for as long as Nancy can remember.

FRATES: Oh, very early, very early. I was told in fourth grade when he was 10 years old. His gym teacher came up to me and said she had been watching him since he was in first grade, and she said, he's a Division I athlete.

RAZ: As Pete got older, autumn meant he was playing football, winter, it was hockey, and in the summer, baseball.

FRATES: I was the team captain mother who would run, you know, all the team events.

RAZ: Pete did, in fact, play Division I. It was baseball at Boston College. He was a star on the team but not quite good enough to make the major leagues, so eventually, he gave up that dream. And he settled on a corporate job in Boston.

FRATES: But Pete was still playing baseball. He was playing in an intercity league in Boston, which is pretty high-level league. And we were still going to baseball games.

RAZ: And what happened next, Nancy tells the story from the TED stage.

(SOUNDBITE OF TED TALK)

FRATES: So it takes me back to the summer of 2011. We're at the playoff game. Pete's at the plate, and a fastball's coming in, and it hits him on the wrist. His wrist went completely limp, like this. So for the next six months, Pete went back to his home in Southie and was going to doctors to see what was wrong with this wrist that never came back. Six months later, in March, he called my husband and I and he said, oh, Mom and Dad, we have a doctor that found a diagnosis for that wrist. You want to come to the doctor's appointment with me? I said, sure, we'll come in.

That morning, Pete, John and I all got up, got dressed and got in our cars, walked into the neurologist's office, sat down. Four doctors walk in. And the head neurologist sits down. And he says, well, Pete, we've looken (ph) at all these tests, and I have to tell you, it's not a sprained wrist. It's not a broken wrist. It's not nerve damage in the wrist. It's not an infection. It's not Lyme disease. And there was this deliberate elimination going up. And I was thinking to myself, where is he going with this?

Then he put his hands on his knees, and he looked right at my 27-year-old kid and said, I don't know how to tell a 27-year-old this. Pete, you have ALS. ALS? I had had a friend whose 80-year-old father had ALS. I looked at my husband. He looked at me. And then we looked at the doctor. And we said, ALS? OK. What treatment? Let's go. What do we do? Let's go. And he looked at us and said, Mr. and Mrs. Frates, I'm sorry to tell you this, but there's no treatment and there's no cure. We didn't even understand that it had been 75 years since Lou Gehrig and nothing had been done in the progress against ALS.

So we all went home. And Jenn and Dan flew home from Wall Street. Andrew came home from Charlestown. And Pete went to BC to pick up his then-girlfriend Julie and brought her home. And six hours later after diagnosis, we're sitting around having a family dinner. And we're having small chat. I don't even remember cooking dinner that night. But then our leader, Pete, set the vision and talked to us just like we were his new team. He said, there will be no wallowing, people. He goes, we're not looking back, we're looking forward. What an amazing opportunity we have to change the world. I'm going to change the face of this unacceptable situation of ALS. We're going to move the needle, and I'm going to get it in front of philanthropists like Bill Gates. And that was it. We were given our directive.

RAZ: Within days, Pete's family and friends created a website and a Facebook group. They called it Team Frate Train. And Pete started documenting these moments in his life, like when he proposed to his girlfriend Julie or when they got married and when they were expecting a baby girl. And his family used the page to raise awareness of ALS and also to collect donations for his care.

(SOUNDBITE OF TED TALK)

FRATES: Uncle Dave, he was the webmaster, Uncle Artie, he was the accountant, Auntie Dana, she was the graphic artist. And my youngest son, Andrew, quit his job, left his apartment in Charlestown and says, I'm going to take care of Pete and be his caregiver.

RAZ: All the while this was happening, Pete was getting worse. In most cases, ALS progresses like this. First, you need help walking, then a wheelchair. Eventually, after a year or so, you're unable to move or speak at all.

(SOUNDBITE OF TED TALK)

FRATES: Today, Pete's completely paralyzed. He can't hold his head up any longer. He's confined to a motorized wheelchair. He can no longer swallow or eat. He has a feeding tube. He can't speak. He talks with eye gazer technology and a speech-generating device. And we're watching his lungs because his diaphragm eventually is going to give out. And then the decision will be made to put him on a ventilator or not.

RAZ: So even though Pete was in the middle of this decline, Team Frate Train was building momentum. Pete had more than 4,000 followers on Facebook. Nancy was going to public events, trying to promote awareness of the disease. And she was already starting to make the transition from amateur to professional organizer. And then in the summer of 2014, that big opportunity Pete talked about when he was first diagnosed, the thing that would move the needle, it happened.

FRATES: You know, everybody wants to know who put the first bucket over their head. Look, I can't even tell you that. It actually had been around the Internet for months.

RAZ: Nancy is talking about the ALS Ice Bucket Challenge. You probably saw it. Maybe you did it. And this is where it started.

And it wasn't even for ALS initially, right?

FRATES: No, it was for many, many other diseases, nonprofits. And the real story is there was a golfer in Florida.

(SOUNDBITE OF VIDEO)

UNIDENTIFIED MAN #1: ...The ice bucket challenge...

FRATES: It came across his feed. His cousin's husband has ALS.

(SOUNDBITE OF VIDEO)

UNIDENTIFIED MAN #1: You're going to donate hundred dollars to the ALS Foundation.

FRATES: He sent it up to her in Westchester County, N.Y.

(SOUNDBITE OF VIDEO)

JEANETTE SENERCHIA: And this is to generate awareness about ALS.

FRATES: She did for ALS, Jeanette Senerchia. They were cross-referenced in a mutual feed with Pat Quinn. Now, Pat Quinn was being mentored by Pete Frates. So Pat Quinn called Pete Frates and said, I think we're going to take this. And they grabbed it and made it their own. They became purposeful, and they became strategic. And they said, we're going to do this for ALS.

(SOUNDBITE OF VIDEO)

RYAN CASALE: This is Ryan Casale (ph), accepting the ice bucket challenge in support of Team Frate Train.

(SOUNDBITE OF VIDEO)

UNIDENTIFIED MAN #2: And to honor Pete Frates.

(SOUNDBITE OF VIDEO)

UNIDENTIFIED WOMAN: Pete Frates.

(SOUNDBITE OF VIDEO)

CASALE: Ah.

(SOUNDBITE OF VIDEO)

UNIDENTIFIED MAN #2: Oh.

(SOUNDBITE OF VIDEO)

UNIDENTIFIED WOMAN: (Laughter).

(SOUNDBITE OF TED TALK)

FRATES: By about day four, Uncle Dave, the webmaster, yeah, he isn't on Facebook. And I get a text from him and it says, Nancy, what the hell is going on? Uncle Dave gets a hit every time Pete's website is gone onto, and his phone was blowing up. So we all sat down, and we realized money, money is coming in - how amazing. So we knew awareness would lead to funding. We just didn't know it would only take a couple of days. So we got together, put our best 501(c)(3)s on Pete's website and off we went.

RAZ: And that was it. It just kind of snowballed from there. Athletes started picking it up, like Derek Jeter...

(SOUNDBITE OF VIDEO)

DEREK JETER: (Screaming).

RAZ: ...And LeBron James

(SOUNDBITE OF VIDEO)

LEBRON JAMES: (Screaming).

RAZ: Actors.

(SOUNDBITE OF VIDEO)

JACK BLACK: Hi, I'm Jack Black and...

RAZ: Emma Stone did it.

(SOUNDBITE OF VIDEO)

EMMA STONE: And I hereby nominate Bill Murray...

RAZ: Robert Downey Jr.

(SOUNDBITE OF VIDEO)

ROBERT DOWNEY JR.: (Screaming).

RAZ: Justin Timberlake.

(SOUNDBITE OF VIDEO)

JUSTIN TIMBERLAKE: JT here.

RAZ: And Taylor Swift.

(SOUNDBITE OF VIDEO)

TAYLOR SWIFT: Oh, dear God, we're going to do this.

UNIDENTIFIED PEOPLE: Three, two, one.

RAZ: George W. Bush did it.

(SOUNDBITE OF VIDEO)

GEORGE W. BUSH: And now it's my privilege to challenge my friend Bill Clinton.

RAZ: And Bill Gates...

(SOUNDBITE OF VIDEO)

BILL GATES: I'm going to challenge three more people - Elon Musk, Ryan Seacrest.

RAZ: ...The one person Pete Frates wanted to reach. And within weeks, the ice bucket challenge became one of the biggest and fastest fundraising campaigns in history. It would eventually raise a quarter of a billion dollars for ALS charities. And Pete Frates and his mom, Nancy, they would become the faces of that movement.

At what point did you say, this is unbelievable? Like, do you remember just thinking to yourself, this is crazy?

FRATES: Yeah, we didn't - to be perfectly honest with you, we didn't have a whole lot of time to do that. This thing happened so fast. And what was going on in my house, of course, is we were trying to keep the motor going with the engagement.

RAZ: You knew nothing about this.

FRATES: Nothing, nothing.

RAZ: Nothing. You have no medical background. You had no fundraising background. Nothing.

FRATES: No, but I had a business background.

RAZ: Yeah.

FRATES: And that's the skill set that we brought to this. We knew we could brand. And we looked at the awareness piece as branding. And we just knew if we tell people the reality of this disease, they'll open their hearts and then they'll open their wallets. Was I a social media whiz? I wasn't even on Facebook. I had to - you know, I had to get on Facebook and learn how to do that. But Pete was the one when this thing happened, he told us, OK this is what I want you to do. And quickly, we picked up on it because it was using marketing skills and merchandising skills and branding skills. Those were very known to us and very comfortable to us. So we just kind of converted it to this new cause that we had. But it was also driven by not a paycheck. It was driven by the love of a child.

RAZ: Do you ever, like, step back and think, like, how crazy it is that you went from knowing almost nothing about this disease or about leading a movement or, you know, starting a charity to becoming kind of like the face - like, the mom of ALS research?

FRATES: Put a challenge in front of me. Let me educate myself. Let me see what I can lend to it that will help it be productive, proactive. That's how I've kind of lived my whole life. A story that I haven't told often is that I am myself am a cancer survivor. I had cancer at 17. So when you stare down your own mortality at that age, you don't take a whole lot for granted. I've pretty much lived my life like that, and so this was just another piece - but it was my child.

RAZ: Do you think, Nancy, that anybody would have the capacity to do what you've done, to be positive and upbeat, to be so forceful? Or do you think that you have a particular drive?

FRATES: I think I choose to do this every day. Look, could I roll up in bed and put the covers over my head and cry every day? Absolutely. But taking the easy way out has really never been an option for me. And so I make a choice every morning to live my day in positivity because that's the only way I can help others.

RAZ: That's Nancy Frates. Team Frate Train is still fighting for Pete. He recently had to go on a ventilator. His spirits are pretty good, though. He's calling himself the bionic man. The second annual ALS Ice Bucket Challenge is happening now. If you want to find out more, you can go to petefrates.com. And you can also find Nancy's talk at ted.com.

(SOUNDBITE OF SONG, "I'LL TRY SOMETHING NEW")

THE MIRACLES: (Singing) I would build you a castle with a tower so high, it reaches the moon. I'll gather melodies from birdies that fly and compose you a tune, give you loving warm as mama's oven. And if that don't do, then I'll try something new.

RAZ: Hey, thanks for listening to our show this week, Amateur Hour. If you want to let us know what you think about the show, go to ted.npr.org and click on contact us. You can follow us on Twitter at @TEDRadioHour. Mine is @guyraz. Our production staff at NPR includes Jeff Rogers, Brent Baughman, Meghan Keane, Neva Grant and Sanaz Meshkinpour, with help from Daniel Shukhin. Our intern is Sharif Youssef. Our partners at TED are Chris Anderson, June Cohen, Deron Triff and Janet Lee.

I'm Guy Raz, and you've been listening to ideas worth spreading right here on the TED Radio Hour from NPR.

(SOUNDBITE OF THE MIRACLES SONG, "I'LL TRY SOMETHING NEW") Transcript provided by NPR, Copyright NPR.