Meet the mom who started the Ice Bucket Challenge | Nancy Frates | TEDxBoston
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0:09 - 0:10Well, good afternoon.
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0:10 - 0:12How many of you
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0:12 - 0:15took the ALS Ice Bucket Challenge?
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0:15 - 0:17(Applause)
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0:17 - 0:19Woo hoo!
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0:19 - 0:22Well, I have to tell you, from the bottom of our hearts,
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0:22 - 0:25thank you so very, very much.
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0:25 - 0:27Do you know to date the ALS Association
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0:27 - 0:33has raised 125 million dollars?
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0:33 - 0:36Woo hoo! (Applause)
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0:39 - 0:43It takes me back to the summer of 2011.
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0:43 - 0:45My family, my kids had all grown up.
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0:45 - 0:46We were officially empty nesters,
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0:46 - 0:49and we decided, let's go on a family vacation.
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0:49 - 0:51Jenn, my daughter, and my son-in-law
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0:51 - 0:53came down from New York.
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0:53 - 0:54My youngest, Andrew,
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0:54 - 0:57he came down from his home in Charlestown
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0:57 - 0:59where he was working in Boston,
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0:59 - 1:00and my son Pete,
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1:00 - 1:03who had played at Boston College, baseball,
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1:03 - 1:06had played baseball professionally in Europe,
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1:06 - 1:11and had now come home and was sellinggroup insurance, he also joined us.
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1:11 - 1:12And one night, I found myself
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1:12 - 1:14having a beer with Pete,
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1:14 - 1:16and Pete was looking at me and he just said,
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1:16 - 1:18"You know, Mom, I don't know,
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1:18 - 1:22selling group insurance is just not my passion."
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1:22 - 1:28He said, "I just don't feel I'm living up to my potential.
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1:28 - 1:31I don't feel this is my mission in life."
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1:31 - 1:35And he said, "You know, oh by the way, Mom,
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1:35 - 1:38I have to leave early from vacation
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1:38 - 1:42because my inter-city league team that I play for made the playoffs,
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1:42 - 1:47and I have to get back to Boston because I can't let my team down.
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1:47 - 1:50I'm just not as passionate about my job
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1:50 - 1:52as I am about baseball."
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1:52 - 1:55So off Pete went, and left the family vacation —
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1:55 - 1:57break a mother's heart —
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1:57 - 2:01and he went, and we followed four days later
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2:01 - 2:04to see the next playoff game.
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2:04 - 2:07We're at the playoff game, Pete's at the plate,
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2:07 - 2:09and a fastball's coming in,
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2:09 - 2:11and it hits him on the wrist.
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2:11 - 2:14Oh, Pete.
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2:14 - 2:16His wrist went completely limp, like this.
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2:16 - 2:18So for the next six months,
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2:18 - 2:20Pete went back to his home in Southie,
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2:20 - 2:23kept working that unpassionate job,
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2:23 - 2:25and was going to doctors
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2:25 - 2:27to see what was wrong with this wrist
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2:27 - 2:29that never came back.
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2:29 - 2:31Six months later, in March,
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2:31 - 2:32he called my husband and me, and he said,
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2:32 - 2:34"Oh, Mom and Dad, we have a doctor
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2:34 - 2:37that found a diagnosis for that wrist.
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2:37 - 2:41Do you want to come with thedoctor's appointment with me?"
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2:41 - 2:43I said, "Sure, we'll come in."
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2:43 - 2:46That morning, Pete, John and I
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2:46 - 2:48all got up, got dressed, got in our cars —
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2:48 - 2:50three separate cars
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2:50 - 2:51because we were going to go to work
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2:51 - 2:55after the doctor's appointment tofind out what happened to the wrist.
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2:55 - 2:57We walked into the neurologist's office, sat down,
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2:57 - 2:59four doctors walk in,
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2:59 - 3:01and the head neurologist sits down.
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3:01 - 3:04And he says, "Well, Pete, we'vebeen looking at all the tests,
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3:04 - 3:07and I have to tell you, it's not a sprained wrist,
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3:07 - 3:10it's not a broken wrist,
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3:10 - 3:12it's not nerve damage in the wrist,
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3:12 - 3:14it's not an infection,
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3:14 - 3:17it's not Lyme disease."
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3:17 - 3:21And there was this deliberate elimination going up,
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3:21 - 3:23and I was thinking to myself,
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3:23 - 3:26where is he going with this?
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3:26 - 3:28Then he put his hands on his knees,
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3:28 - 3:31he looked right at my 27-year-old kid, and said,
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3:31 - 3:35"I don't know how to tell a 27-year-old this:
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3:35 - 3:38Pete, you have ALS."
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3:38 - 3:41ALS?
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3:41 - 3:45I had had a friend whose 80-year-old father had ALS.
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3:45 - 3:47I looked at my husband, he looked at me,
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3:47 - 3:50and then we looked at the doctor, and we said, "ALS?
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3:50 - 3:52Okay, what treatment? Let's go.
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3:52 - 3:56What do we do? Let's go."
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3:56 - 3:58And he looked at us, and hesaid, "Mr. and Mrs. Frates,
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3:58 - 4:00I'm sorry to tell you this,
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4:00 - 4:05but there's no treatment and there's no cure."
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4:05 - 4:08We were the worst culprits.
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4:08 - 4:10We didn't even understand
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4:10 - 4:12that it had been 75 years since Lou Gehrig
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4:12 - 4:18and nothing had been done in the progress against ALS.
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4:18 - 4:21So we all went home, and Jenn and Dan
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4:21 - 4:23flew home from Wall Street,
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4:23 - 4:26Andrew came home from Charlestown,
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4:26 - 4:28and Pete went to B.C. to pick up
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4:28 - 4:31his then-girlfriend Julie and brought her home,
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4:31 - 4:33and six hours later after diagnosis,
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4:33 - 4:36we're sitting around having a family dinner,
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4:36 - 4:38and we're having small chat.
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4:38 - 4:41I don't even remember cooking dinner that night.
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4:41 - 4:48But then our leader, Pete, set the vision,
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4:48 - 4:51and talked to us just like we were his new team.
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4:51 - 4:54He said, "There will be no wallowing, people."
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4:54 - 4:57He goes, "We're not looking back,
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4:57 - 4:59we're looking forward.
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4:59 - 5:05What an amazing opportunity we have to change the world.
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5:05 - 5:07I'm going to change the face
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5:07 - 5:10of this unacceptable situation of ALS.
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5:10 - 5:12We're going to move the needle,
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5:12 - 5:16and I'm going to get it in frontof philanthropists like Bill Gates."
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5:16 - 5:20And that was it. We were given our directive.
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5:20 - 5:22So in the days and months that followed,
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5:22 - 5:25within a week, we had our brothers and sisters
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5:25 - 5:28and our family come to us,
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5:28 - 5:30that they were already creating Team Frate Train.
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5:30 - 5:33Uncle Dave, he was the webmaster;
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5:33 - 5:35Uncle Artie, he was the accountant;
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5:35 - 5:38Auntie Dana, she was the graphic artist;
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5:38 - 5:41and my youngest son, Andrew,
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5:41 - 5:44quit his job, left his apartment in Charlestown
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5:44 - 5:48and says, "I'm going to take care of Pete and be his caregiver."
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5:48 - 5:51Then all those people, classmates, teammates,
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5:51 - 5:53coworkers that Pete had inspired
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5:53 - 5:56throughout his whole life,
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5:56 - 6:00the circles of Pete all startedintersecting with one another,
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6:00 - 6:04and made Team Frate Train.
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6:04 - 6:06Six months after diagnosis,
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6:06 - 6:11Pete was given an award at a research summit for advocacy.
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6:11 - 6:14He got up and gave a very eloquent speech,
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6:14 - 6:17and at the end of the speech, there was a panel,
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6:17 - 6:19and on the panel were thesepharmaceutical executives
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6:19 - 6:22and biochemists and clinicians
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6:22 - 6:24and I'm sitting there and I'm listening to them
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6:24 - 6:27and most of the content went straight over my head.
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6:27 - 6:30I avoided every science class I ever could.
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6:30 - 6:33But I was watching these people,and I was listening to them,
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6:33 - 6:35and they were saying, "I, I do this, I do that,"
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6:35 - 6:39and there was a real unfamiliarity between them.
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6:39 - 6:43So at the end of their talk, the panel,
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6:43 - 6:44they had questions and answers,
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6:44 - 6:47and boom, my hand went right up,
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6:47 - 6:48and I get the microphone,
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6:48 - 6:50and I look at them and I say, "Thank you.
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6:50 - 6:52Thank you so much for working in ALS.
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6:52 - 6:54It means so very much to us."
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6:54 - 6:56I said, "But I do have to tell you
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6:56 - 6:58that I'm watching your body language
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6:58 - 7:00and I'm listening to what you're saying.
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7:00 - 7:05It just doesn't seem like there's a whole lot of collaboration going on here.
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7:05 - 7:08And not only that, where's the flip chart
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7:08 - 7:13with the action items and the follow-up and the accountability?
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7:13 - 7:17What are you going to do after you leave this room?"
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7:17 - 7:20And then I turned around
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7:20 - 7:27and there was about 200 pairs of eyes just staring at me.
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7:27 - 7:30And it was that point that I realized
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7:30 - 7:35that I had talked about the elephant in the room.
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7:35 - 7:38Thus my mission had begun.
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7:38 - 7:41So over the next couple of years,
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7:41 - 7:44Pete — we've had our highs and our lows.
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7:44 - 7:46Pete was put on a compassionate use drug.
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7:46 - 7:49It was hope in a bottle for the whole ALS community.
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7:49 - 7:51It was in a phase III trial.
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7:51 - 7:56Then six months later, the data comes back: no efficacy.
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7:56 - 7:58We were supposed to have therapies overseas,
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7:58 - 8:01and the rug was pulled out from under us.
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8:01 - 8:02So for the next two years,
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8:02 - 8:07we just watched my son be taken away from me,
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8:07 - 8:10little by little every day.
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8:10 - 8:13Two and a half years ago,
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8:13 - 8:16Pete was hitting home runs at baseball fields.
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8:16 - 8:20Today, Pete's completely paralyzed.
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8:20 - 8:22He can't hold his head up any longer.
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8:22 - 8:25He's confined to a motorized wheelchair.
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8:25 - 8:27He can no longer swallow or eat.
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8:27 - 8:29He has a feeding tube.
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8:29 - 8:32He can't speak.
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8:33 - 8:37He talks with eye gaze technology
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8:37 - 8:39and a speech generating device,
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8:39 - 8:40and we're watching his lungs,
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8:40 - 8:43because his diaphragm eventually is going to give out
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8:43 - 8:48and then the decision will be madeto put him on a ventilator or not.
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8:48 - 8:58ALS robs the human of all their physical parts, but the brain stays intact.
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8:58 - 9:02So July 4th, 2014,
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9:02 - 9:0775th year of Lou Gehrig's inspirational speech comes,
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9:07 - 9:12and Pete is asked by MLB.com to writean article in the Bleacher Report.
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9:12 - 9:19And it was very significant, because he wrote it using his eye gaze technology.
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9:19 - 9:26Twenty days later, the ice started to fall.
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9:26 - 9:30On July 27th, Pete's roommate in New York City,
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9:30 - 9:33wearing a Quinn For The Win shirt,
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9:33 - 9:37signifying Pat Quinn, another ALS patient known in New York,
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9:37 - 9:39and B.C. shorts
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9:39 - 9:43said, "I'm taking the ALS Ice Bucket Challenge,"
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9:43 - 9:46picked up the ice, put it over his head.
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9:46 - 9:50"And I'm nominating ..." And he sent it up to Boston.
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9:50 - 9:54And that was on July 27th.
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9:54 - 9:56Over the next couple of days, our news feed
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9:56 - 9:59was full of family and friends.
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9:59 - 10:01If you haven't gone back,the nice thing about Facebook
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10:01 - 10:04is that you have the dates, you can go back.
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10:04 - 10:08You've got to see Uncle Artie's human Bloody Mary.
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10:08 - 10:11I'm telling you, it's one of the best ones,
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10:11 - 10:14and that was probably in day two.
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10:14 - 10:18By about day four, Uncle Dave, the webmaster,
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10:18 - 10:20he isn't on Facebook,
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10:20 - 10:22and I get a text from him, and it says, "Nancy,
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10:22 - 10:25what the hell is going on?"
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10:25 - 10:29Uncle Dave gets a hit every time Pete's website
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10:29 - 10:32is gone onto, and his phone was blowing up.
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10:32 - 10:34So we all sat down and we realized,
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10:34 - 10:38money is coming in — how amazing.
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10:38 - 10:40So we knew awareness would lead to funding,
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10:40 - 10:43we just didn't know it wouldonly take a couple of days.
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10:43 - 10:48So we got together, put our best 501(c)(3)s on Pete's website,
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10:48 - 10:51and off we went.
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10:51 - 10:54So week one, Boston media.
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10:54 - 10:56Week two, national media.
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10:56 - 10:59It was during week two that our neighbor next door
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10:59 - 11:01opened up our door and threw a pizza
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11:01 - 11:03across the kitchen floor, saying,
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11:03 - 11:06"I think you people might need food in there."
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11:06 - 11:09(Laughter)
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11:09 - 11:13Week three, celebrities — Entertainment Tonight,
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11:13 - 11:15Access Hollywood.
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11:15 - 11:21Week four, global — BBC, Irish Radio.
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11:21 - 11:24Did anyone see "Lost In Translation"?
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11:24 - 11:26My husband did Japanese television.
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11:26 - 11:28It was interesting.
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11:28 - 11:30(Laughter)
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11:30 - 11:35And those videos, the popular ones.
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11:35 - 11:40Paul Bissonnette's glacier video, incredible.
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11:40 - 11:43How about the redemption nuns of Dublin?
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11:43 - 11:44Who's seen that one?
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11:44 - 11:47It's absolutely fantastic.
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11:47 - 11:49J.T., Justin Timberlake.
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11:49 - 11:53That's when we knew, that was a real A-list celebrity.
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11:53 - 11:56I go back on my texts, and I can see
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11:56 - 12:01"JT! JT!" My sister texting me.
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12:01 - 12:04Angela Merkel, the chancellor of Germany.
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12:04 - 12:06Incredible.
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12:06 - 12:08And the ALS patients,
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12:08 - 12:11you know what their favoriteones are, and their families'?
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12:11 - 12:13All of them.
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12:13 - 12:18Because this misunderstood and underfunded "rare" disease,
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12:18 - 12:24they just sat and watched people saying it over and over: "ALS, ALS."
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12:24 - 12:28It was unbelievable.
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12:28 - 12:30And those naysayers,
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12:30 - 12:32let's just talk a couple of stats, shall we?
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12:32 - 12:35Okay, so the ALS Association,
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12:35 - 12:39they think by year end,it'll be 160 million dollars.
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12:39 - 12:42ALS TDI in Cambridge,
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12:42 - 12:44they raised three million dollars.
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12:44 - 12:45Well, guess what?
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12:45 - 12:48They had a clinical trial for a drugthat they've been developing.
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12:48 - 12:52It was on a three-year track for funding.
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12:52 - 12:53Two months.
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12:53 - 12:55It's coming out starting in two months.
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12:55 - 12:59(Applause)
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13:02 - 13:07And YouTube has reported
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13:07 - 13:14that over 150 countries have postedIce Bucket Challenges for ALS.
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13:14 - 13:20And Facebook, 2.5 million videos,
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13:20 - 13:24and I had the awesome adventure
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13:24 - 13:26visiting the Facebook campus last week,
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13:26 - 13:29and I said to them, "I knowwhat it was like in my house.
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13:29 - 13:32I can't imagine what it was like around here."
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13:32 - 13:36All she said was, "Jaw-dropping."
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13:36 - 13:41And my family's favorite video?
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13:41 - 13:45Bill Gates.
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13:45 - 13:48Because the night Pete was diagnosed,
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13:48 - 13:55he told us that he was going to get ALS infront of philanthropists like Bill Gates,
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13:55 - 13:57and he did it.
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13:57 - 13:59Goal number one, check.
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13:59 - 14:01Now on to the treatment and cure.
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14:01 - 14:07(Applause)
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14:11 - 14:14So okay, after all of this ice,
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14:14 - 14:16we know that it was much more
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14:16 - 14:19than just pouring buckets of ice water over your head,
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14:19 - 14:20and I really would like to leave you
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14:20 - 14:23with a couple of things that I'd like you to remember.
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14:23 - 14:25The first thing is,
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14:25 - 14:27every morning when you wake up,
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14:27 - 14:30you can choose to live your day in positivity.
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14:32 - 14:35Would any of you blame me
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14:35 - 14:37if I just was in the fetal position
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14:37 - 14:40and pulled the covers over my head every day?
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14:40 - 14:42No, I don't think anybody would blame me,
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14:42 - 14:45but Pete has inspired us to wake up
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14:45 - 14:48every morning and be positive and proactive.
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14:48 - 14:51I actually had to ditch support groups
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14:51 - 14:54because everybody was in there saying that
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14:54 - 14:56spraying their lawns with chemicals,
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14:56 - 14:57that's why they got ALS,
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14:57 - 14:59and I was like, "I don't think so,"
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14:59 - 15:03but I had to get away from the negativity.
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15:03 - 15:06The second thing I want to leave you with
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15:06 - 15:09is the person at the middle of the challenge
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15:09 - 15:12has to be willing to have the mental toughness
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15:12 - 15:16to put themselves out there.
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15:16 - 15:18Pete still goes to baseball games
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15:18 - 15:21and he still sits with his teammates in the dugout,
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15:21 - 15:24and he hangs his gravity feed bag
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15:24 - 15:26right on the cages.
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15:26 - 15:27You'll see the kids, they're up there hanging it up.
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15:27 - 15:29"Pete, is that okay?" "Yup."
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15:29 - 15:32And then they put it right into his stomach.
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15:32 - 15:36Because he wants them to seewhat the reality of this is,
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15:36 - 15:39and how he's never, ever going to give up.
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15:39 - 15:41And the third thing I want to leave you with:
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15:41 - 15:45If you ever come across a situation
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15:45 - 15:48that you see as so unacceptable,
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15:48 - 15:52I want you to dig down as deep as you can
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15:52 - 15:54and find your best mother bear
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15:54 - 15:57and go after it.
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15:57 - 16:02(Applause)
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16:31 - 16:33Thank you.
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16:33 - 16:37(Applause)
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16:37 - 16:38I know that I'm running over,
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16:38 - 16:40but I've got to leave you with this:
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16:40 - 16:43the gifts that my son has given me.
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16:43 - 16:46I have had 29 years
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16:46 - 16:50of having the honor of being the mother
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16:50 - 16:52of Pete Frates.
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16:52 - 16:57Pete Frates has been inspiring and leading his whole life.
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16:57 - 16:59He's thrown out kindness,
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16:59 - 17:03and all that kindness has come back to him.
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17:03 - 17:09He walks the face of the Earth right now and knows why he's here.
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17:09 - 17:12What a gift.
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17:12 - 17:15The second thing that my son has given me
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17:15 - 17:18is he's given me my mission in life.
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17:18 - 17:20Now I know why I'm here.
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17:20 - 17:23I'm going to save my son,
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17:23 - 17:26and if it doesn't happen in time for him,
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17:26 - 17:28I'm going to work so that no other mother
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17:28 - 17:32has to go through what I'm going through.
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17:32 - 17:35And the third thing, and last but not least
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17:35 - 17:38gift that my son has given me,
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17:38 - 17:40as an exclamation point
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17:40 - 17:41to the miraculous month
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17:41 - 17:45of August 2014:
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17:45 - 17:51That girlfriend that he went to get on the night of diagnosis is now his wife,
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17:51 - 18:00and Pete and Julie have given me my granddaughter, Lucy Fitzgerald Frates.
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18:00 - 18:05Lucy Fitzgerald Frates came two weeks early
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18:05 - 18:07as the exclamation point
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18:07 - 18:11on August 31st, 2014.
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18:11 - 18:13And so —
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18:13 - 18:22(Applause) —
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18:22 - 18:26And so let me leave you with Pete's words of inspiration
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18:26 - 18:33that he would use to classmates,coworkers and teammates.
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18:33 - 18:36Be passionate.
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18:36 - 18:39Be genuine.
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18:39 - 18:42Be hardworking.
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18:42 - 18:46And don't forget to be great.
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18:46 - 18:48Thank you. (Applause)
- Title:
- Meet the mom who started the Ice Bucket Challenge | Nancy Frates | TEDxBoston
- Description:
-
This talk was given at a local TEDx event, produced independently of the TED Conferences. When 27-year-old Pete Frates injured his wrist in a baseball game, he got an unexpected diagnosis: it wasn’t a broken bone, it was ALS. Better known as Lou Gehrig’s disease, ALS causes paralysis and death—there is no cure. And still, Pete saw an opportunity to drive awareness about the disease. In a brave talk, his mom Nancy Frates tells the story of how the family developed the ALS Ice Bucket Challenge and took great pleasure in seeing everyone from Justin Timberlake to Bill Gates take part. If you accepted the challenge, please take the next step: share this talk as you did your challenge video.
- Video Language:
- English
- Team:
- closed TED
- Project:
- TEDxTalks
- Duration:
- 19:37
TED Translators admin edited English subtitles for An ice bucket worth spreading | Nancy Frates | TEDxBoston | ||
TED Translators admin edited English subtitles for An ice bucket worth spreading | Nancy Frates | TEDxBoston | ||
TED Translators admin edited English subtitles for An ice bucket worth spreading | Nancy Frates | TEDxBoston | ||
TED Translators admin edited English subtitles for An ice bucket worth spreading | Nancy Frates | TEDxBoston | ||
TED Translators admin edited English subtitles for An ice bucket worth spreading | Nancy Frates | TEDxBoston | ||
TED Translators admin edited English subtitles for An ice bucket worth spreading | Nancy Frates | TEDxBoston | ||
TED Translators admin edited English subtitles for An ice bucket worth spreading | Nancy Frates | TEDxBoston |