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  • Well, good afternoon.

  • How many of you

  • took the ALS Ice Bucket Challenge?

  • (Applause)

  • Woo hoo!

  • Well, I have to tell you, from the bottom of our hearts,

  • thank you so very, very much.

  • Do you know to date the ALS Association

  • has raised 125 million dollars?

  • Woo hoo! (Applause)

  • It takes me back to the summer of 2011.

  • My family, my kids had all grown up.

  • We were officially empty nesters,

  • and we decided, let's go on a family vacation.

  • Jenn, my daughter, and my son-in-law

  • came down from New York.

  • My youngest, Andrew,

  • he came down from his home in Charlestown

  • where he was working in Boston,

  • and my son Pete,

  • who had played at Boston College, baseball,

  • had played baseball professionally in Europe,

  • and had now come home and was selling group insurance, he also joined us.

  • And one night, I found myself

  • having a beer with Pete,

  • and Pete was looking at me and he just said,

  • "You know, Mom, I don't know,

  • selling group insurance is just not my passion."

  • He said, "I just don't feel I'm living up to my potential.

  • I don't feel this is my mission in life."

  • And he said, "You know, oh by the way, Mom,

  • I have to leave early from vacation

  • because my inter-city league team that I play for made the playoffs,

  • and I have to get back to Boston because I can't let my team down.

  • I'm just not as passionate about my job

  • as I am about baseball."

  • So off Pete went, and left the family vacation

  • break a mother's heart

  • and he went, and we followed four days later

  • to see the next playoff game.

  • We're at the playoff game, Pete's at the plate,

  • and a fastball's coming in,

  • and it hits him on the wrist.

  • Oh, Pete.

  • His wrist went completely limp, like this.

  • So for the next six months,

  • Pete went back to his home in Southie,

  • kept working that unpassionate job,

  • and was going to doctors

  • to see what was wrong with this wrist

  • that never came back.

  • Six months later, in March,

  • he called my husband and me, and he said,

  • "Oh, Mom and Dad, we have a doctor

  • that found a diagnosis for that wrist.

  • Do you want to come with the doctor's appointment with me?"

  • I said, "Sure, we'll come in."

  • That morning, Pete, John and I

  • all got up, got dressed, got in our cars

  • three separate cars

  • because we were going to go to work

  • after the doctor's appointment to find out what happened to the wrist.

  • We walked into the neurologist's office, sat down,

  • four doctors walk in,

  • and the head neurologist sits down.

  • And he says, "Well, Pete, we've been looking at all the tests,

  • and I have to tell you, it's not a sprained wrist,

  • it's not a broken wrist,

  • it's not nerve damage in the wrist,

  • it's not an infection,

  • it's not Lyme disease."

  • And there was this deliberate elimination going up,

  • and I was thinking to myself,

  • where is he going with this?

  • Then he put his hands on his knees,

  • he looked right at my 27-year-old kid, and said,

  • "I don't know how to tell a 27-year-old this:

  • Pete, you have ALS."

  • ALS?

  • I had had a friend whose 80-year-old father had ALS.

  • I looked at my husband, he looked at me,

  • and then we looked at the doctor, and we said, "ALS?

  • Okay, what treatment? Let's go.

  • What do we do? Let's go."

  • And he looked at us, and he said, "Mr. and Mrs. Frates,

  • I'm sorry to tell you this,

  • but there's no treatment and there's no cure."

  • We were the worst culprits.

  • We didn't even understand

  • that it had been 75 years since Lou Gehrig

  • and nothing had been done in the progress against ALS.

  • So we all went home, and Jenn and Dan

  • flew home from Wall Street,

  • Andrew came home from Charlestown,

  • and Pete went to B.C. to pick up

  • his then-girlfriend Julie and brought her home,

  • and six hours later after diagnosis,

  • we're sitting around having a family dinner,

  • and we're having small chat.

  • I don't even remember cooking dinner that night.

  • But then our leader, Pete, set the vision,

  • and talked to us just like we were his new team.

  • He said, "There will be no wallowing, people."

  • He goes, "We're not looking back,

  • we're looking forward.

  • What an amazing opportunity we have to change the world.

  • I'm going to change the face

  • of this unacceptable situation of ALS.

  • We're going to move the needle,

  • and I'm going to get it in front of philanthropists like Bill Gates."

  • And that was it. We were given our directive.

  • So in the days and months that followed,

  • within a week, we had our brothers and sisters

  • and our family come to us,

  • that they were already creating Team Frate Train.

  • Uncle Dave, he was the webmaster;

  • Uncle Artie, he was the accountant;

  • Auntie Dana, she was the graphic artist;

  • and my youngest son, Andrew,

  • quit his job, left his apartment in Charlestown

  • and says, "I'm going to take care of Pete and be his caregiver."

  • Then all those people, classmates, teammates,

  • coworkers that Pete had inspired

  • throughout his whole life,

  • the circles of Pete all started intersecting with one another,

  • and made Team Frate Train.

  • Six months after diagnosis,

  • Pete was given an award at a research summit for advocacy.

  • He got up and gave a very eloquent speech,

  • and at the end of the speech, there was a panel,

  • and on the panel were these pharmaceutical executives

  • and biochemists and clinicians

  • and I'm sitting there and I'm listening to them

  • and most of the content went straight over my head.

  • I avoided every science class I ever could.

  • But I was watching these people, and I was listening to them,

  • and they were saying, "I, I do this, I do that,"

  • and there was a real unfamiliarity between them.

  • So at the end of their talk, the panel,

  • they had questions and answers,

  • and boom, my hand went right up,

  • and I get the microphone,

  • and I look at them and I say, "Thank you.

  • Thank you so much for working in ALS.

  • It means so very much to us."

  • I said, "But I do have to tell you

  • that I'm watching your body language

  • and I'm listening to what you're saying.

  • It just doesn't seem like there's a whole lot of collaboration going on here.

  • And not only that, where's the flip chart

  • with the action items and the follow-up and the accountability?

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

  • And then I turned around

  • and there was about 200 pairs of eyes just staring at me.

  • And it was that point that I realized

  • that I had talked about the elephant in the room.

  • Thus my mission had begun.

  • So over the next couple of years,

  • Petewe've had our highs and our lows.

  • Pete was put on a compassionate use drug.

  • It was hope in a bottle for the whole ALS community.

  • It was in a phase III trial.

  • Then six months later, the data comes back: no efficacy.

  • We were supposed to have therapies overseas,

  • and the rug was pulled out from under us.

  • So for the next two years,

  • we just watched my son be taken away from me,

  • little by little every day.

  • Two and a half years ago,

  • Pete was hitting home runs at baseball fields.

  • Today, Pete's completely paralyzed.

  • He can't hold his head up any longer.

  • He's confined to a motorized wheelchair.

  • He can no longer swallow or eat.

  • He has a feeding tube.

  • He can't speak.

  • He talks with eye gaze technology

  • and a speech generating device,

  • and we're watching his lungs,

  • because his diaphragm eventually is going to give out

  • and then the decision will be made to put him on a ventilator or not.

  • ALS robs the human of all their physical parts, but the brain stays intact.

  • So July 4th, 2014,

  • 75th year of Lou Gehrig's inspirational speech comes,

  • and Pete is asked by MLB.com to write an article in the Bleacher Report.

  • And it was very significant, because he wrote it using his eye gaze technology.

  • Twenty days later, the ice started to fall.

  • On July 27th, Pete's roommate in New York City,

  • wearing a Quinn For The Win shirt,

  • signifying Pat Quinn, another ALS patient known in New York,

  • and B.C. shorts

  • said, "I'm taking the ALS Ice Bucket Challenge,"

  • picked up the ice, put it over his head.

  • "And I'm nominating ..." And he sent it up to Boston.

  • And that was on July 27th.

  • Over the next couple of days, our news feed

  • was full of family and friends.

  • If you haven't gone back, the nice thing about Facebook

  • is that you have the dates, you can go back.

  • You've got to see Uncle Artie's human Bloody Mary.

  • I'm telling you, it's one of the best ones,

  • and that was probably in day two.

  • By about day four, Uncle Dave, the webmaster,

  • he isn't on Facebook,

  • and I get a text from him, and it says, "Nancy,

  • what the hell is going on?"

  • Uncle Dave gets a hit every time Pete's website

  • is gone onto, and his phone was blowing up.

  • So we all sat down and we realized,

  • money is coming inhow amazing.

  • So we knew awareness would lead to funding,

  • we just didn't know it would only take a couple of days.

  • So we got together, put our best 501(c)(3)s on Pete's website,

  • and off we went.

  • So week one, Boston media.

  • Week two, national media.

  • It was during week two that our neighbor next door

  • opened up our door and threw a pizza

  • across the kitchen floor, saying,

  • "I think you people might need food in there."

  • (Laughter)

  • Week three, celebritiesEntertainment Tonight,

  • Access Hollywood.

  • Week four, globalBBC, Irish Radio.

  • Did anyone see "Lost In Translation"?

  • My husband did Japanese television.

  • It was interesting.

  • (Laughter)

  • And those videos, the popular ones.

  • Paul Bissonnette's glacier video, incredible.

  • How about the redemption nuns of Dublin?

  • Who's seen that one?

  • It's absolutely fantastic.

  • J.T., Justin Timberlake.

  • That's when we knew, that was a real A-list celebrity.

  • I go back on my texts, and I can see

  • "JT! JT!" My sister texting me.

  • Angela Merkel, the chancellor of Germany.

  • Incredible.

  • And the ALS patients,

  • you know what their favorite ones are, and their families'?

  • All of them.

  • Because this misunderstood and underfunded "rare" disease,

  • they just sat and watched people saying it over and over: "ALS, ALS."

  • It was unbelievable.

  • And those naysayers,

  • let's just talk a couple of stats, shall we?

  • Okay, so the ALS Association,

  • they think by year end, it'll be 160 million dollars.