WEBVTT

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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,

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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,

00:13:18.968 --> 00:13:21.869
and I had the awesome adventure

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visiting the Facebook campus last week,

00:13:25.144 --> 00:13:27.832
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

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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,

00:14:17.414 --> 00:14:19.160
and I really would like to leave you

00:14:19.160 --> 00:14:21.705
with a couple of things
that I'd like you to remember.

00:14:21.705 --> 00:14:23.617
The first thing is,

00:14:23.617 --> 00:14:25.855
every morning when you wake up,

00:14:25.855 --> 00:14:29.570
you can choose to live your day
in positivity.

00:14:30.970 --> 00:14:33.115
Would any of you blame me

00:14:33.115 --> 00:14:35.484
if I just was in the fetal position

00:14:35.484 --> 00:14:38.785
and pulled the covers over my head
every day?

00:14:38.785 --> 00:14:41.000
No, I don't think anybody would blame me,

00:14:41.000 --> 00:14:43.656
but Pete has inspired us to wake up

00:14:43.656 --> 00:14:46.945
every morning
and be positive and proactive.

00:14:46.945 --> 00:14:49.592
I actually had to ditch support groups

00:14:49.592 --> 00:14:52.239
because everybody was in there saying

00:14:52.239 --> 00:14:54.440
that spraying their lawns with chemicals,

00:14:54.440 --> 00:14:56.280
that's why they got ALS,

00:14:56.280 --> 00:14:58.228
and I was like, "I don't think so,"

00:14:58.228 --> 00:15:01.303
but I had to get away from the negativity.

00:15:03.244 --> 00:15:05.264
The second thing I want to leave you with

00:15:05.264 --> 00:15:07.751
is the person at the middle
of the challenge

00:15:07.751 --> 00:15:10.815
has to be willing to have
the mental toughness

00:15:10.815 --> 00:15:13.322
to put themselves out there.

00:15:14.152 --> 00:15:16.644
Pete still goes to baseball games

00:15:16.644 --> 00:15:19.451
and he still sits with his teammates
in the dugout,

00:15:19.451 --> 00:15:22.718
and he hangs his gravity feed bag

00:15:22.718 --> 00:15:24.096
right on the cages.

00:15:24.096 --> 00:15:26.531
You'll see the kids,
they're up there hanging it up.

00:15:26.531 --> 00:15:27.988
"Pete, is that okay?" "Yup."

00:15:27.988 --> 00:15:30.319
And then they put it
right into his stomach.

00:15:30.860 --> 00:15:34.162
Because he wants them to see
what the reality of this is,

00:15:34.162 --> 00:15:37.276
and how he's never,
ever going to give up.

00:15:37.888 --> 00:15:40.056
And the third thing
I want to leave you with:

00:15:40.056 --> 00:15:43.052
If you ever come across a situation

00:15:43.052 --> 00:15:46.225
that you see as so unacceptable,

00:15:46.225 --> 00:15:49.832
I want you to dig down as deep as you can

00:15:49.832 --> 00:15:52.844
and find your best mother bear

00:15:52.844 --> 00:15:54.852
and go after it.

00:15:54.852 --> 00:15:59.530
(Applause)

00:16:29.333 --> 00:16:30.888
Thank you.

00:16:33.876 --> 00:16:35.583
(Applause ends)

00:16:35.805 --> 00:16:37.280
I know that I'm running over,

00:16:37.280 --> 00:16:39.278
but I've got to leave you with this:

00:16:39.278 --> 00:16:41.785
the gifts that my son has given me.

00:16:41.785 --> 00:16:44.504
I have had 29 years

00:16:44.504 --> 00:16:48.565
of having the honor of being the mother

00:16:48.565 --> 00:16:50.416
of Pete Frates.

00:16:50.416 --> 00:16:55.646
Pete Frates has been inspiring
and leading his whole life.

00:16:55.646 --> 00:16:57.760
He's thrown out kindness,

00:16:57.760 --> 00:17:00.749
and all that kindness
has come back to him.

00:17:01.841 --> 00:17:07.250
He walks the face of the Earth
right now and knows why he's here.

00:17:07.930 --> 00:17:09.942
What a gift.

00:17:10.473 --> 00:17:13.271
The second thing that my son has given me

00:17:13.271 --> 00:17:15.881
is he's given me my mission in life.

00:17:16.730 --> 00:17:18.707
Now I know why I'm here.

00:17:18.707 --> 00:17:21.034
I'm going to save my son,

00:17:21.034 --> 00:17:24.144
and if it doesn't happen in time for him,

00:17:24.144 --> 00:17:26.785
I'm going to work so that no other mother

00:17:26.785 --> 00:17:29.474
has to go through what I'm going through.

00:17:30.870 --> 00:17:33.333
And the third thing,
and last but not least

00:17:33.333 --> 00:17:35.816
gift that my son has given me,

00:17:35.816 --> 00:17:38.101
as an exclamation point

00:17:38.101 --> 00:17:39.648
to the miraculous month

00:17:39.648 --> 00:17:41.869
of August 2014:

00:17:43.510 --> 00:17:48.745
That girlfriend that he went to get
on the night of diagnosis is now his wife,

00:17:49.899 --> 00:17:55.782
and Pete and Julie have given me
my granddaughter, Lucy Fitzgerald Frates.

00:17:58.006 --> 00:18:02.230
Lucy Fitzgerald Frates
came two weeks early

00:18:03.347 --> 00:18:05.583
as the exclamation point

00:18:05.583 --> 00:18:08.252
on August 31st, 2014.

00:18:10.135 --> 00:18:11.465
And so -

00:18:11.465 --> 00:18:14.577
(Applause) -

00:18:20.212 --> 00:18:24.436
And so let me leave you
with Pete's words of inspiration

00:18:24.436 --> 00:18:28.733
that he would use to classmates,
coworkers and teammates.

00:18:31.009 --> 00:18:33.178
Be passionate.

00:18:34.966 --> 00:18:36.805
Be genuine.

00:18:36.805 --> 00:18:38.983
Be hardworking.

00:18:40.188 --> 00:18:43.557
And don't forget to be great.

00:18:44.378 --> 00:18:48.065
Thank you. (Applause)