ABOUT THE SPEAKER
Nancy Frates - Mother + ALS Advocate
Nancy Frates and her family have raised a projected $160 million for ALS research in 2014. How? They kicked off the ALS Ice Bucket Challenge to honor 29-year-old Pete Frates.

Why you should listen

When Nancy Frates’ son was diagnosed with ALS in 2012, she was confused. Pete was a 27-year-old athlete and the only people she’d ever known with this disease were elderly already. Ever since that life-changing moment, she and her family have found their sense of purpose in working tirelessly to raise awareness about ALS and to stimulate funding for research. Because it’s been 75 years since Lou Gehrig delivered his famed farewell speech, and no treatment or cure has been found. This, says Nancy Frates, is unacceptable.

This July, Pete Frates inspired the ALS Ice Bucket Challenge, which quickly became a viral fundraising phenomenon. The challenge inspired people across the United States and world to dump a bucket of ice on their head and pass the challenge on to three friends. In all, The ALS Association projects that the challenge will have raised $160 million for research by the end of 2014.

Pete Frates is now paralyzed and mute—he speaks to the world through eye gazer technology and through his family. They all remain hopeful for progress in treating this terrible disease.

More profile about the speaker
Nancy Frates | Speaker | TED.com
TEDxBoston

Nancy Frates: Meet the mom who started the Ice Bucket Challenge

Filmed:
1,072,268 views

Remember the Ice Bucket Challenge craze this summer? Meet the mom who started it all. When Nancy Frates's son Pete hurt his wrist in a baseball game, he got an unexpected diagnosis: it wasn’t a broken bone, it was ALS, and there is no cure. In this inspiring talk, Nancy tells the story of what happened next.
- Mother + ALS Advocate
Nancy Frates and her family have raised a projected $160 million for ALS research in 2014. How? They kicked off the ALS Ice Bucket Challenge to honor 29-year-old Pete Frates. Full bio

Double-click the English transcript below to play the video.

00:12
Well, good afternoon.
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How many of you
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took the ALS Ice Bucket Challenge?
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(Applause)
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Woo hoo!
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Well, I have to tell you, from
the bottom of our hearts,
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thank you so very, very much.
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Do you know to date the ALS Association
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has raised 125 million dollars?
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Woo hoo! (Applause)
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It takes me back to the summer of 2011.
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My family, my kids had all grown up.
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We were officially empty nesters,
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and we decided, let's
go on a family vacation.
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Jenn, my daughter, and my son-in-law
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came down from New York.
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My youngest, Andrew,
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he came down from his home in Charlestown
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where he was working in Boston,
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and my son Pete,
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who had played at
Boston College, baseball,
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had played baseball
professionally in Europe,
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and had now come home and was selling
group insurance, he also joined us.
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And one night, I found myself
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having a beer with Pete,
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and Pete was looking at
me and he just said,
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"You know, Mom, I don't know,
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selling group insurance
is just not my passion."
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He said, "I just don't feel
I'm living up to my potential.
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I don't feel this is my mission in life."
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And he said, "You know,
oh by the way, Mom,
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I have to leave early from vacation
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because my inter-city league team
that I play for made the playoffs,
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and I have to get back to Boston
because I can't let my team down.
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I'm just not as passionate about my job
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as I am about baseball."
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So off Pete went, and
left the family vacation —
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break a mother's heart —
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and he went, and we
followed four days later
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to see the next playoff game.
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We're at the playoff game,
Pete's at the plate,
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and a fastball's coming in,
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and it hits him on the wrist.
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Oh, Pete.
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His wrist went completely limp, like this.
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So for the next six months,
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Pete went back to his home in Southie,
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kept working that unpassionate job,
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and was going to doctors
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to see what was wrong with this wrist
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that never came back.
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Six months later, in March,
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he called my husband
and me, and he said,
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"Oh, Mom and Dad, we have a doctor
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that found a diagnosis for that wrist.
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Do you want to come with the
doctor's appointment with me?"
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I said, "Sure, we'll come in."
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That morning, Pete, John and I
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all got up, got dressed, got in our cars —
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three separate cars
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because we were going to go to work
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after the doctor's appointment to
find out what happened to the wrist.
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We walked into the
neurologist's office, sat down,
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four doctors walk in,
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and the head neurologist sits down.
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And he says, "Well, Pete, we've
been looking at all the tests,
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and I have to tell you,
it's not a sprained wrist,
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it's not a broken wrist,
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it's not nerve damage in the wrist,
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it's not an infection,
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it's not Lyme disease."
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And there was this deliberate
elimination going up,
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and I was thinking to myself,
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where is he going with this?
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Then he put his hands on his knees,
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he looked right at my
27-year-old kid, and said,
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"I don't know how to
tell a 27-year-old this:
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Pete, you have ALS."
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ALS?
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I had had a friend whose
80-year-old father had ALS.
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I looked at my husband, he looked at me,
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and then we looked at the
doctor, and we said, "ALS?
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Okay, what treatment? Let's go.
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What do we do? Let's go."
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And he looked at us, and he
said, "Mr. and Mrs. Frates,
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I'm sorry to tell you this,
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but there's no treatment
and there's no cure."
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We were the worst culprits.
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We didn't even understand
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that it had been 75 years since Lou Gehrig
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and nothing had been done
in the progress against ALS.
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So we all went home, and Jenn and Dan
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flew home from Wall Street,
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Andrew came home from Charlestown,
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and Pete went to B.C. to pick up
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his then-girlfriend Julie
and brought her home,
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and six hours later after diagnosis,
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we're sitting around
having a family dinner,
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and we're having small chat.
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I don't even remember
cooking dinner that night.
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But then our leader, Pete, set the vision,
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and talked to us just like
we were his new team.
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He said, "There will be
no wallowing, people."
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He goes, "We're not looking back,
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we're looking forward.
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What an amazing opportunity
we have to change the world.
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I'm going to change the face
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of this unacceptable situation of ALS.
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We're going to move the needle,
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and I'm going to get it in front
of philanthropists like Bill Gates."
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And that was it. We
were given our directive.
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So in the days and months that followed,
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within a week, we had
our brothers and sisters
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and our family come to us,
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that they were already
creating Team Frate Train.
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Uncle Dave, he was the webmaster;
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Uncle Artie, he was the accountant;
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Auntie Dana, she was the graphic artist;
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and my youngest son, Andrew,
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quit his job, left his
apartment in Charlestown
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and says, "I'm going to take care
of Pete and be his caregiver."
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Then all those people,
classmates, teammates,
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coworkers that Pete had inspired
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throughout his whole life,
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the circles of Pete all started
intersecting with one another,
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and made Team Frate Train.
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Six months after diagnosis,
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Pete was given an award at a
research summit for advocacy.
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He got up and gave a very eloquent speech,
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and at the end of the
speech, there was a panel,
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and on the panel were these
pharmaceutical executives
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and biochemists and clinicians
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and I'm sitting there and
I'm listening to them
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and most of the content
went straight over my head.
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I avoided every science
class I ever could.
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But I was watching these people,
and I was listening to them,
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and they were saying,
"I, I do this, I do that,"
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and there was a real
unfamiliarity between them.
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So at the end of their talk, the panel,
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they had questions and answers,
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and boom, my hand went right up,
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and I get the microphone,
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and I look at them and I say, "Thank you.
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Thank you so much for working in ALS.
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It means so very much to us."
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I said, "But I do have to tell you
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that I'm watching your body language
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and I'm listening to what you're saying.
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It just doesn't seem like there's a whole
lot of collaboration going on here.
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And not only that, where's the flip chart
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with the action items and the
follow-up and the accountability?
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What are you going to do
after you leave this room?"
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And then I turned around
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and there was about 200 pairs
of eyes just staring at me.
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And it was that point that I realized
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that I had talked about
the elephant in the room.
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Thus my mission had begun.
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So over the next couple of years,
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Pete — we've had our highs and our lows.
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Pete was put on a compassionate use drug.
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It was hope in a bottle for
the whole ALS community.
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It was in a phase III trial.
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Then six months later, the
data comes back: no efficacy.
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We were supposed to
have therapies overseas,
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and the rug was
pulled out from under us.
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So for the next two years,
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we just watched my son
be taken away from me,
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little by little every day.
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Two and a half years ago,
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Pete was hitting home
runs at baseball fields.
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Today, Pete's completely paralyzed.
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He can't hold his head up any longer.
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He's confined to a motorized wheelchair.
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He can no longer swallow or eat.
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He has a feeding tube.
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He can't speak.
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He talks with eye gaze technology
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and a speech generating device,
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and we're watching his lungs,
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because his diaphragm
eventually is going to give out
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and then the decision will be made
to put him on a ventilator or not.
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ALS robs the human of all their physical
parts, but the brain stays intact.
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So July 4th, 2014,
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75th year of Lou Gehrig's
inspirational speech comes,
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and Pete is asked by MLB.com to write
an article in the Bleacher Report.
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And it was very significant, because he
wrote it using his eye gaze technology.
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Twenty days later,
the ice started to fall.
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On July 27th, Pete's
roommate in New York City,
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wearing a Quinn For The Win shirt,
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signifying Pat Quinn, another
ALS patient known in New York,
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and B.C. shorts
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said, "I'm taking the ALS
Ice Bucket Challenge,"
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picked up the ice, put it over his head.
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"And I'm nominating ..."
And he sent it up to Boston.
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And that was on July 27th.
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Over the next couple
of days, our news feed
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was full of family and friends.
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If you haven't gone back,
the nice thing about Facebook
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is that you have the dates, you can go back.
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You've got to see Uncle Artie's
human Bloody Mary.
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I'm telling you, it's one of the best ones,
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and that was probably in day two.
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By about day four, Uncle
Dave, the webmaster,
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he isn't on Facebook,
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and I get a text from him,
and it says, "Nancy,
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what the hell is going on?"
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Uncle Dave gets a hit
every time Pete's website
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is gone onto, and his
phone was blowing up.
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So we all sat down and we realized,
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money is coming in — how amazing.
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So we knew awareness
would lead to funding,
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we just didn't know it would
only take a couple of days.
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So we got together, put our best
501(c)(3)s on Pete's website,
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and off we went.
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So week one, Boston media.
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Week two, national media.
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It was during week two
that our neighbor next door
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opened up our door and threw a pizza
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across the kitchen floor, saying,
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"I think you people might
need food in there."
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(Laughter)
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Week three, celebrities —
Entertainment Tonight,
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Access Hollywood.
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Week four, global — BBC, Irish Radio.
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Did anyone see "Lost In Translation"?
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My husband did Japanese television.
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It was interesting.
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(Laughter)
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And those videos, the popular ones.
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Paul Bissonnette's
glacier video, incredible.
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How about the redemption nuns of Dublin?
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Who's seen that one?
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It's absolutely fantastic.
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J.T., Justin Timberlake.
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That's when we knew, that
was a real A-list celebrity.
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I go back on my texts, and I can see
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"JT! JT!" My sister texting me.
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Angela Merkel, the chancellor of Germany.
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Incredible.
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And the ALS patients,
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you know what their favorite
ones are, and their families'?
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All of them.
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Because this misunderstood and
underfunded "rare" disease,
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they just sat and watched people
saying it over and over: "ALS, ALS."
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It was unbelievable.
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And those naysayers,
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let's just talk a couple
of stats, shall we?
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Okay, so the ALS Association,
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they think by year end,
it'll be 160 million dollars.
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ALS TDI in Cambridge,
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they raised three million dollars.
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Well, guess what?
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They had a clinical trial for a drug
that they've been developing.
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It was on a three-year track for funding.
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Two months.
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It's coming out starting in two months.
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(Applause)
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And YouTube has reported
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that over 150 countries have posted
Ice Bucket Challenges for ALS.
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And Facebook, 2.5 million videos,
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and I had the awesome adventure
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visiting the Facebook campus last week,
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and I said to them, "I know
what it was like in my house.
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I can't imagine what it
was like around here."
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All she said was, "Jaw-dropping."
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And my family's favorite video?
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Bill Gates.
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Because the night Pete was diagnosed,
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he told us that he was going to get ALS in
front of philanthropists like Bill Gates,
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and he did it.
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Goal number one, check.
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Now on to the treatment and cure.
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(Applause)
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So okay, after all of this ice,
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we know that it was much more
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than just pouring buckets of
ice water over your head,
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and I really would like to leave you
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with a couple of things that
I'd like you to remember.
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The first thing is,
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every morning when you wake up,
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you can choose to live your day in positivity.
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Would any of you blame me
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if I just was in the fetal position
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and pulled the covers
over my head every day?
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No, I don't think anybody would blame me,
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but Pete has inspired us to wake up
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every morning and be
positive and proactive.
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I actually had to ditch support groups
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because everybody was in there saying that
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spraying their lawns with chemicals,
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that's why they got ALS,
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and I was like, "I don't think so,"
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but I had to get away from the negativity.
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The second thing I want to leave you with
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is the person at the
middle of the challenge
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has to be willing to have
the mental toughness
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to put themselves out there.
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Pete still goes to baseball games
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15:22
and he still sits with his
teammates in the dugout,
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and he hangs his gravity feed bag
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right on the cages.
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You'll see the kids, they're
up there hanging it up.
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"Pete, is that okay?" "Yup."
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And then they put it
right into his stomach.
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Because he wants them to see
what the reality of this is,
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and how he's never, ever going to give up.
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And the third thing I
want to leave you with:
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If you ever come across a situation
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that you see as so unacceptable,
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I want you to dig down as deep as you can
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15:55
and find your best mother bear
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and go after it.
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(Applause)
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Thank you.
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(Applause)
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I know that I'm running over,
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but I've got to leave you with this:
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the gifts that my son has given me.
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I have had 29 years
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of having the honor of being the mother
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of Pete Frates.
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Pete Frates has been inspiring
and leading his whole life.
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He's thrown out kindness,
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and all that kindness
has come back to him.
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He walks the face of the Earth
right now and knows why he's here.
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What a gift.
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The second thing that my son has given me
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is he's given me my mission in life.
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Now I know why I'm here.
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I'm going to save my son,
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and if it doesn't happen in time for him,
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I'm going to work so that no other mother
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has to go through what I'm going through.
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And the third thing,
and last but not least
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gift that my son has given me,
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as an exclamation point
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to the miraculous month
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of August 2014:
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That girlfriend that he went to get on
the night of diagnosis is now his wife,
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and Pete and Julie have given me my
granddaughter, Lucy Fitzgerald Frates.
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Lucy Fitzgerald Frates came two weeks early
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as the exclamation point
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on August 31st, 2014.
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And so —
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(Applause) —
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And so let me leave you with
Pete's words of inspiration
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that he would use to classmates,
coworkers and teammates.
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Be passionate.
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Be genuine.
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Be hardworking.
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And don't forget to be great.
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Thank you. (Applause)
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ABOUT THE SPEAKER
Nancy Frates - Mother + ALS Advocate
Nancy Frates and her family have raised a projected $160 million for ALS research in 2014. How? They kicked off the ALS Ice Bucket Challenge to honor 29-year-old Pete Frates.

Why you should listen

When Nancy Frates’ son was diagnosed with ALS in 2012, she was confused. Pete was a 27-year-old athlete and the only people she’d ever known with this disease were elderly already. Ever since that life-changing moment, she and her family have found their sense of purpose in working tirelessly to raise awareness about ALS and to stimulate funding for research. Because it’s been 75 years since Lou Gehrig delivered his famed farewell speech, and no treatment or cure has been found. This, says Nancy Frates, is unacceptable.

This July, Pete Frates inspired the ALS Ice Bucket Challenge, which quickly became a viral fundraising phenomenon. The challenge inspired people across the United States and world to dump a bucket of ice on their head and pass the challenge on to three friends. In all, The ALS Association projects that the challenge will have raised $160 million for research by the end of 2014.

Pete Frates is now paralyzed and mute—he speaks to the world through eye gazer technology and through his family. They all remain hopeful for progress in treating this terrible disease.

More profile about the speaker
Nancy Frates | Speaker | TED.com
THE ORIGINAL VIDEO ON TED.COM