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)

NOTE Paragraph

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So 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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Jen, my daughter, 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 on 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

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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

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made the playoffs, and I have to get back to Boston

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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."

NOTE Paragraph

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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.

NOTE Paragraph

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Six months later, in March,

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he called my husband and I, 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 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

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against ALS.

NOTE Paragraph

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So we all went home, and Jen 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 BC to pick up

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his then-girlfriend Julie and 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,

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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

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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.

NOTE Paragraph

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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

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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.

NOTE Paragraph

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Six months after diagnosis,

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Pete was given an award at a research summit

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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

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of collaboration going on here.

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And not only that, where's the flip chart

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with, like, the action items and the follow-up

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and the accountability?

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What are you going to do after you leave this room?"

NOTE Paragraph

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And then I turned around

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and there was about 200 pairs of eyes

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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 [???] youth 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 three trial.

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Then, six months later, the data comes back:

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no efficacy.

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We were supposed to have therapies overseas,

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and the rug was pulled out of 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 gazer 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

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to put him on a ventilator or not.

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ALS robs the human

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of all their physical parts,

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but the brain stays intact.

NOTE Paragraph

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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

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an article in the Bleacher Report,

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and it was very significant, because he wrote it

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using his eye gazer technology.

NOTE Paragraph

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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

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[????],

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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 gotta 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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yeah, 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, money is coming in, how amazing.

NOTE Paragraph

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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 501c3's

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on Pete's website, 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, those videos,

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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 what we knew, that was a real A-List celebrity,

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and 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

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"rare" disease,

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they just sat and watched people saying it

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over and over, "ALS, ALS."

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It was unbelievable.

NOTE Paragraph

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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,

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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

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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

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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."

NOTE Paragraph

00:13:28.390 --> 00:13:33.370
And my family's favorite video?

00:13:33.370 --> 00:13:36.576
Bill Gates,

00:13:36.576 --> 00:13:39.659
because the night Pete was diagnosed,

00:13:39.659 --> 00:13:42.784
he told us that he was going to get ALS

00:13:42.784 --> 00:13:47.456
in front of philanthropists like Bill Gates,

00:13:47.456 --> 00:13:48.790
and he did it.

00:13:48.790 --> 00:13:51.260
Goal number one, check.

00:13:51.260 --> 00:13:53.203
Now on to the treatment and cure.

00:13:53.203 --> 00:13:59.498
(Applause)

NOTE Paragraph

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So okay, after all of this ice,

00:14:05.829 --> 00:14:07.725
we know that it was much more

00:14:07.725 --> 00:14:10.927
than just pouring buckets of ice water over your head,

00:14:10.927 --> 00:14:12.375
and I really would like to leave you

00:14:12.375 --> 00:14:15.289
with a couple of things that I'd like you to remember.

00:14:15.289 --> 00:14:16.964
The first thing is,

00:14:16.964 --> 00:14:19.190
every morning when you wake up,

00:14:19.190 --> 00:14:22.266
you can choose to live your day

00:14:22.266 --> 00:14:24.249
in positivity.

00:14:24.249 --> 00:14:26.520
Would any of you blame me

00:14:26.520 --> 00:14:28.859
if I just was in the fetal position

00:14:28.859 --> 00:14:32.416
and pulled the covers over my head every day?

00:14:32.416 --> 00:14:34.308
No, I don't think anybody would blame me,

00:14:34.308 --> 00:14:37.550
but Pete has inspired us to wake up

00:14:37.550 --> 00:14:40.496
every morning and be positive and proactive.

00:14:40.496 --> 00:14:43.300
I actually had to ditch support groups

00:14:43.300 --> 00:14:45.779
because everybody was in there saying that

00:14:45.779 --> 00:14:47.613
spraying their lawns with chemicals,

00:14:47.613 --> 00:14:49.481
that's why they got ALS,

00:14:49.481 --> 00:14:51.120
and I was like, "I don't think so,"

00:14:51.120 --> 00:14:55.459
but I had to get away from the negativity.

NOTE Paragraph

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The second thing I want to leave you with

00:14:58.346 --> 00:15:01.160
is the person at the middle of the challenge

00:15:01.160 --> 00:15:04.240
has to be willing to have the mental toughness

00:15:04.240 --> 00:15:07.985
to put themselves out there.

00:15:07.985 --> 00:15:10.210
Pete still goes to baseball games

00:15:10.210 --> 00:15:13.264
and he still sits with his teammates in the dugout,

00:15:13.264 --> 00:15:16.147
and he hangs his gravity feed bag

00:15:16.147 --> 00:15:17.547
right on the cages.

00:15:17.547 --> 00:15:19.317
You'll see the kids, they're up there hanging it up.

00:15:19.317 --> 00:15:20.988
"Pete, is that okay?" "Yup."

00:15:20.988 --> 00:15:24.239
And then they put it right into his stomach.

00:15:24.239 --> 00:15:25.994
Because he wants them to see

00:15:25.994 --> 00:15:27.771
what the reality of this is,

00:15:27.771 --> 00:15:31.193
and how he's never, ever going to give up.

NOTE Paragraph

00:15:31.193 --> 00:15:33.243
And the third thing I want to leave you with,

00:15:33.243 --> 00:15:36.759
if you ever come across a situation

00:15:36.759 --> 00:15:39.898
that you see as so unacceptable,

00:15:39.898 --> 00:15:43.621
I want you to dig down as deep as you can

00:15:43.621 --> 00:15:46.476
and find your best mother bear

00:15:46.476 --> 00:15:48.885
and go after it.

00:15:48.885 --> 00:15:54.438
(Applause)

00:16:22.886 --> 00:16:24.954
Thank you.

00:16:24.954 --> 00:16:29.341
(Applause)

NOTE Paragraph

00:16:29.341 --> 00:16:30.430
I know that I'm running over,

00:16:30.430 --> 00:16:32.197
but I've got to leave you with this:

00:16:32.197 --> 00:16:35.371
the gifts that my son has given me.

00:16:35.371 --> 00:16:38.084
I have had 29 years

00:16:38.084 --> 00:16:41.900
of having the honor of being the mother

00:16:41.900 --> 00:16:43.939
of Pete Frates.

00:16:43.939 --> 00:16:47.485
Pete Frates has been inspiring and leading

00:16:47.485 --> 00:16:49.301
his whole life.

00:16:49.301 --> 00:16:51.257
He's thrown out kindness,

00:16:51.257 --> 00:16:54.897
and all that kindness has come back to him.

00:16:54.897 --> 00:16:58.366
He walks the face of the Earth right now

00:16:58.366 --> 00:17:01.342
and knows why he's here.

00:17:01.342 --> 00:17:04.190
What a gift.

NOTE Paragraph

00:17:04.190 --> 00:17:06.821
The second thing that my son has given me

00:17:06.821 --> 00:17:10.186
is he's given me my mission in life.

00:17:10.186 --> 00:17:11.680
Now I know why I'm here.

00:17:11.680 --> 00:17:14.824
I'm going to save my son,

00:17:14.824 --> 00:17:17.614
and if it doesn't happen in time for him,

00:17:17.614 --> 00:17:20.256
I'm going to work so that no other mother

00:17:20.256 --> 00:17:23.815
has to go through what I'm going through.

NOTE Paragraph

00:17:23.815 --> 00:17:26.509
And the third thing and last but not least

00:17:26.519 --> 00:17:29.546
gift that my son has given me,

00:17:29.546 --> 00:17:31.633
as an exclamation point

00:17:31.633 --> 00:17:33.426
to the miraculous month

00:17:33.426 --> 00:17:37.104
of August 2014,

00:17:37.104 --> 00:17:39.117
that girlfriend that he went to get

00:17:39.117 --> 00:17:40.825
on the night of diagnosis

00:17:40.825 --> 00:17:43.358
is now his wife,

00:17:43.358 --> 00:17:46.458
and Pete are Julie have given me

00:17:46.458 --> 00:17:48.631
my granddaughter,

00:17:48.631 --> 00:17:51.745
Lucy Fitzgerald Frates.

00:17:51.745 --> 00:17:56.730
Lucy Fitzgerald Frates came two weeks early

00:17:56.730 --> 00:17:58.928
as the exclamation point

00:17:58.928 --> 00:18:03.307
on August 31st, 2014.

NOTE Paragraph

00:18:03.307 --> 00:18:04.981
And so

00:18:04.981 --> 00:18:13.865
— (Applause) —

00:18:13.865 --> 00:18:16.619
and so let me leave you with Pete's words

00:18:16.619 --> 00:18:19.887
of inspiration that he would use to classmates,

00:18:19.887 --> 00:18:24.980
coworkers, and teammates.

00:18:24.980 --> 00:18:28.153
Be passionate.

00:18:28.153 --> 00:18:30.660
Be genuine.

00:18:30.660 --> 00:18:33.654
Be hardworking.

00:18:33.654 --> 00:18:37.938
And don't forget to be great.

NOTE Paragraph

00:18:37.938 --> 00:18:40.362
Thank you. (Applause)