Meet the mom who started the Ice Bucket Challenge
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0:01 - 0:02Well, good afternoon.
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0:02 - 0:04How many of you
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0:04 - 0:07took the ALS Ice Bucket Challenge?
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0:07 - 0:09(Applause)
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0:09 - 0:11Woo hoo!
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0:11 - 0:14Well, I have to tell you, from
the bottom of our hearts, -
0:14 - 0:17thank you so very, very much.
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0:17 - 0:19Do you know to date the ALS Association
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0:19 - 0:25has raised 125 million dollars?
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0:25 - 0:28Woo hoo! (Applause)
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0:31 - 0:35It takes me back to the summer of 2011.
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0:35 - 0:37My family, my kids had all grown up.
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0:37 - 0:38We were officially empty nesters,
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0:38 - 0:41and we decided, let's
go on a family vacation. -
0:41 - 0:43Jenn, my daughter, and my son-in-law
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0:43 - 0:45came down from New York.
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0:45 - 0:46My youngest, Andrew,
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0:46 - 0:49he came down from his home in Charlestown
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0:49 - 0:51where he was working in Boston,
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0:51 - 0:52and my son Pete,
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0:52 - 0:55who had played at
Boston College, baseball, -
0:55 - 0:58had played baseball
professionally in Europe, -
0:58 - 1:03and had now come home and was selling
group insurance, he also joined us. -
1:03 - 1:04And one night, I found myself
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1:04 - 1:06having a beer with Pete,
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1:06 - 1:08and Pete was looking at
me and he just said, -
1:08 - 1:10"You know, Mom, I don't know,
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1:10 - 1:14selling group insurance
is just not my passion." -
1:14 - 1:20He said, "I just don't feel
I'm living up to my potential. -
1:20 - 1:23I don't feel this is my mission in life."
-
1:23 - 1:27And he said, "You know,
oh by the way, Mom, -
1:27 - 1:30I have to leave early from vacation
-
1:30 - 1:34because my inter-city league team
that I play for made the playoffs, -
1:34 - 1:39and I have to get back to Boston
because I can't let my team down. -
1:39 - 1:42I'm just not as passionate about my job
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1:42 - 1:44as I am about baseball."
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1:44 - 1:47So off Pete went, and
left the family vacation — -
1:47 - 1:49break a mother's heart —
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1:49 - 1:53and he went, and we
followed four days later -
1:53 - 1:56to see the next playoff game.
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1:56 - 1:59We're at the playoff game,
Pete's at the plate, -
1:59 - 2:01and a fastball's coming in,
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2:01 - 2:03and it hits him on the wrist.
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2:03 - 2:06Oh, Pete.
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2:06 - 2:08His wrist went completely limp, like this.
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2:08 - 2:10So for the next six months,
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2:10 - 2:12Pete went back to his home in Southie,
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2:12 - 2:15kept working that unpassionate job,
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2:15 - 2:17and was going to doctors
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2:17 - 2:19to see what was wrong with this wrist
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2:19 - 2:21that never came back.
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2:21 - 2:23Six months later, in March,
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2:23 - 2:24he called my husband
and me, and he said, -
2:24 - 2:26"Oh, Mom and Dad, we have a doctor
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2:26 - 2:29that found a diagnosis for that wrist.
-
2:29 - 2:33Do you want to come with the
doctor's appointment with me?" -
2:33 - 2:35I said, "Sure, we'll come in."
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2:35 - 2:38That morning, Pete, John and I
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2:38 - 2:40all got up, got dressed, got in our cars —
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2:40 - 2:42three separate cars
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2:42 - 2:43because we were going to go to work
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2:43 - 2:47after the doctor's appointment to
find out what happened to the wrist. -
2:47 - 2:49We walked into the
neurologist's office, sat down, -
2:49 - 2:51four doctors walk in,
-
2:51 - 2:53and the head neurologist sits down.
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2:53 - 2:56And he says, "Well, Pete, we've
been looking at all the tests, -
2:56 - 2:59and I have to tell you,
it's not a sprained wrist, -
2:59 - 3:02it's not a broken wrist,
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3:02 - 3:04it's not nerve damage in the wrist,
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3:04 - 3:06it's not an infection,
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3:06 - 3:09it's not Lyme disease."
-
3:09 - 3:13And there was this deliberate
elimination going up, -
3:13 - 3:15and I was thinking to myself,
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3:15 - 3:18where is he going with this?
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3:18 - 3:20Then he put his hands on his knees,
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3:20 - 3:23he looked right at my
27-year-old kid, and said, -
3:23 - 3:27"I don't know how to
tell a 27-year-old this: -
3:27 - 3:30Pete, you have ALS."
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3:30 - 3:33ALS?
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3:33 - 3:37I had had a friend whose
80-year-old father had ALS. -
3:37 - 3:39I looked at my husband, he looked at me,
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3:39 - 3:42and then we looked at the
doctor, and we said, "ALS? -
3:42 - 3:44Okay, what treatment? Let's go.
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3:44 - 3:48What do we do? Let's go."
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3:48 - 3:50And he looked at us, and he
said, "Mr. and Mrs. Frates, -
3:50 - 3:52I'm sorry to tell you this,
-
3:52 - 3:57but there's no treatment
and there's no cure." -
3:57 - 4:00We were the worst culprits.
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4:00 - 4:02We didn't even understand
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4:02 - 4:04that it had been 75 years since Lou Gehrig
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4:04 - 4:10and nothing had been done
in the progress against ALS. -
4:10 - 4:13So we all went home, and Jenn and Dan
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4:13 - 4:15flew home from Wall Street,
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4:15 - 4:18Andrew came home from Charlestown,
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4:18 - 4:20and Pete went to B.C. to pick up
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4:20 - 4:23his then-girlfriend Julie
and brought her home, -
4:23 - 4:25and six hours later after diagnosis,
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4:25 - 4:28we're sitting around
having a family dinner, -
4:28 - 4:30and we're having small chat.
-
4:30 - 4:33I don't even remember
cooking dinner that night. -
4:33 - 4:40But then our leader, Pete, set the vision,
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4:40 - 4:43and talked to us just like
we were his new team. -
4:43 - 4:46He said, "There will be
no wallowing, people." -
4:46 - 4:49He goes, "We're not looking back,
-
4:49 - 4:51we're looking forward.
-
4:51 - 4:57What an amazing opportunity
we have to change the world. -
4:57 - 4:59I'm going to change the face
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4:59 - 5:02of this unacceptable situation of ALS.
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5:02 - 5:04We're going to move the needle,
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5:04 - 5:08and I'm going to get it in front
of philanthropists like Bill Gates." -
5:08 - 5:12And that was it. We
were given our directive. -
5:12 - 5:14So in the days and months that followed,
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5:14 - 5:17within a week, we had
our brothers and sisters -
5:17 - 5:20and our family come to us,
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5:20 - 5:22that they were already
creating Team Frate Train. -
5:22 - 5:25Uncle Dave, he was the webmaster;
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5:25 - 5:27Uncle Artie, he was the accountant;
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5:27 - 5:30Auntie Dana, she was the graphic artist;
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5:30 - 5:33and my youngest son, Andrew,
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5:33 - 5:36quit his job, left his
apartment in Charlestown -
5:36 - 5:40and says, "I'm going to take care
of Pete and be his caregiver." -
5:40 - 5:43Then all those people,
classmates, teammates, -
5:43 - 5:45coworkers that Pete had inspired
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5:45 - 5:48throughout his whole life,
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5:48 - 5:52the circles of Pete all started
intersecting with one another, -
5:52 - 5:56and made Team Frate Train.
-
5:56 - 5:58Six months after diagnosis,
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5:58 - 6:03Pete was given an award at a
research summit for advocacy. -
6:03 - 6:06He got up and gave a very eloquent speech,
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6:06 - 6:09and at the end of the
speech, there was a panel, -
6:09 - 6:11and on the panel were these
pharmaceutical executives -
6:11 - 6:14and biochemists and clinicians
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6:14 - 6:16and I'm sitting there and
I'm listening to them -
6:16 - 6:19and most of the content
went straight over my head. -
6:19 - 6:22I avoided every science
class I ever could. -
6:22 - 6:25But I was watching these people,
and I was listening to them, -
6:25 - 6:27and they were saying,
"I, I do this, I do that," -
6:27 - 6:31and there was a real
unfamiliarity between them. -
6:31 - 6:35So at the end of their talk, the panel,
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6:35 - 6:36they had questions and answers,
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6:36 - 6:39and boom, my hand went right up,
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6:39 - 6:40and I get the microphone,
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6:40 - 6:42and I look at them and I say, "Thank you.
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6:42 - 6:44Thank you so much for working in ALS.
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6:44 - 6:46It means so very much to us."
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6:46 - 6:48I said, "But I do have to tell you
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6:48 - 6:50that I'm watching your body language
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6:50 - 6:52and I'm listening to what you're saying.
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6:52 - 6:57It just doesn't seem like there's a whole
lot of collaboration going on here. -
6:57 - 7:00And not only that, where's the flip chart
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7:00 - 7:05with the action items and the
follow-up and the accountability? -
7:05 - 7:09What are you going to do
after you leave this room?" -
7:09 - 7:12And then I turned around
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7:12 - 7:19and there was about 200 pairs
of eyes just staring at me. -
7:19 - 7:22And it was that point that I realized
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7:22 - 7:27that I had talked about
the elephant in the room. -
7:27 - 7:30Thus my mission had begun.
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7:30 - 7:33So over the next couple of years,
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7:33 - 7:36Pete — we've had our highs and our lows.
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7:36 - 7:38Pete was put on a compassionate use drug.
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7:38 - 7:41It was hope in a bottle for
the whole ALS community. -
7:41 - 7:43It was in a phase III trial.
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7:43 - 7:48Then six months later, the
data comes back: no efficacy. -
7:48 - 7:50We were supposed to
have therapies overseas, -
7:50 - 7:53and the rug was
pulled out from under us. -
7:53 - 7:54So for the next two years,
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7:54 - 7:59we just watched my son
be taken away from me, -
7:59 - 8:02little by little every day.
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8:02 - 8:05Two and a half years ago,
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8:05 - 8:08Pete was hitting home
runs at baseball fields. -
8:08 - 8:12Today, Pete's completely paralyzed.
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8:12 - 8:14He can't hold his head up any longer.
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8:14 - 8:17He's confined to a motorized wheelchair.
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8:17 - 8:19He can no longer swallow or eat.
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8:19 - 8:21He has a feeding tube.
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8:21 - 8:24He can't speak.
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8:25 - 8:29He talks with eye gaze technology
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8:29 - 8:31and a speech generating device,
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8:31 - 8:32and we're watching his lungs,
-
8:32 - 8:35because his diaphragm
eventually is going to give out -
8:35 - 8:40and then the decision will be made
to put him on a ventilator or not. -
8:40 - 8:50ALS robs the human of all their physical
parts, but the brain stays intact. -
8:50 - 8:54So July 4th, 2014,
-
8:54 - 8:5975th year of Lou Gehrig's
inspirational speech comes, -
8:59 - 9:04and Pete is asked by MLB.com to write
an article in the Bleacher Report. -
9:04 - 9:11And it was very significant, because he
wrote it using his eye gaze technology. -
9:11 - 9:18Twenty days later,
the ice started to fall. -
9:18 - 9:22On July 27th, Pete's
roommate in New York City, -
9:22 - 9:25wearing a Quinn For The Win shirt,
-
9:25 - 9:29signifying Pat Quinn, another
ALS patient known in New York, -
9:29 - 9:31and B.C. shorts
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9:31 - 9:35said, "I'm taking the ALS
Ice Bucket Challenge," -
9:35 - 9:38picked up the ice, put it over his head.
-
9:38 - 9:42"And I'm nominating ..."
And he sent it up to Boston. -
9:42 - 9:46And that was on July 27th.
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9:46 - 9:48Over the next couple
of days, our news feed -
9:48 - 9:51was full of family and friends.
-
9:51 - 9:53If you haven't gone back,
the nice thing about Facebook -
9:53 - 9:56is that you have the dates, you can go back.
-
9:56 - 10:00You've got to see Uncle Artie's
human Bloody Mary. -
10:00 - 10:03I'm telling you, it's one of the best ones,
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10:03 - 10:06and that was probably in day two.
-
10:06 - 10:10By about day four, Uncle
Dave, the webmaster, -
10:10 - 10:12he isn't on Facebook,
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10:12 - 10:14and I get a text from him,
and it says, "Nancy, -
10:14 - 10:17what the hell is going on?"
-
10:17 - 10:21Uncle Dave gets a hit
every time Pete's website -
10:21 - 10:24is gone onto, and his
phone was blowing up. -
10:24 - 10:26So we all sat down and we realized,
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10:26 - 10:30money is coming in — how amazing.
-
10:30 - 10:32So we knew awareness
would lead to funding, -
10:32 - 10:35we just didn't know it would
only take a couple of days. -
10:35 - 10:40So we got together, put our best
501(c)(3)s on Pete's website, -
10:40 - 10:43and off we went.
-
10:43 - 10:46So week one, Boston media.
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10:46 - 10:48Week two, national media.
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10:48 - 10:51It was during week two
that our neighbor next door -
10:51 - 10:53opened up our door and threw a pizza
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10:53 - 10:55across the kitchen floor, saying,
-
10:55 - 10:58"I think you people might
need food in there." -
10:58 - 11:01(Laughter)
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11:01 - 11:05Week three, celebrities —
Entertainment Tonight, -
11:05 - 11:07Access Hollywood.
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11:07 - 11:13Week four, global — BBC, Irish Radio.
-
11:13 - 11:16Did anyone see "Lost In Translation"?
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11:16 - 11:18My husband did Japanese television.
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11:18 - 11:20It was interesting.
-
11:20 - 11:22(Laughter)
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11:22 - 11:27And those videos, the popular ones.
-
11:27 - 11:32Paul Bissonnette's
glacier video, incredible. -
11:32 - 11:35How about the redemption nuns of Dublin?
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11:35 - 11:36Who's seen that one?
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11:36 - 11:39It's absolutely fantastic.
-
11:39 - 11:41J.T., Justin Timberlake.
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11:41 - 11:45That's when we knew, that
was a real A-list celebrity. -
11:45 - 11:48I go back on my texts, and I can see
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11:48 - 11:53"JT! JT!" My sister texting me.
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11:53 - 11:56Angela Merkel, the chancellor of Germany.
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11:56 - 11:58Incredible.
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11:58 - 12:00And the ALS patients,
-
12:00 - 12:03you know what their favorite
ones are, and their families'? -
12:03 - 12:05All of them.
-
12:05 - 12:10Because this misunderstood and
underfunded "rare" disease, -
12:10 - 12:16they just sat and watched people
saying it over and over: "ALS, ALS." -
12:16 - 12:20It was unbelievable.
-
12:20 - 12:22And those naysayers,
-
12:22 - 12:24let's just talk a couple
of stats, shall we? -
12:24 - 12:27Okay, so the ALS Association,
-
12:27 - 12:31they think by year end,
it'll be 160 million dollars. -
12:31 - 12:34ALS TDI in Cambridge,
-
12:34 - 12:36they raised three million dollars.
-
12:36 - 12:37Well, guess what?
-
12:37 - 12:40They had a clinical trial for a drug
that they've been developing. -
12:40 - 12:44It was on a three-year track for funding.
-
12:44 - 12:45Two months.
-
12:45 - 12:47It's coming out starting in two months.
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12:47 - 12:51(Applause)
-
12:54 - 12:59And YouTube has reported
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12:59 - 13:06that over 150 countries have posted
Ice Bucket Challenges for ALS. -
13:06 - 13:12And Facebook, 2.5 million videos,
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13:12 - 13:16and I had the awesome adventure
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13:16 - 13:18visiting the Facebook campus last week,
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13:18 - 13:21and I said to them, "I know
what it was like in my house. -
13:21 - 13:24I can't imagine what it
was like around here." -
13:24 - 13:28All she said was, "Jaw-dropping."
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13:28 - 13:33And my family's favorite video?
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13:33 - 13:37Bill Gates.
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13:37 - 13:40Because the night Pete was diagnosed,
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13:40 - 13:47he told us that he was going to get ALS in
front of philanthropists like Bill Gates, -
13:47 - 13:49and he did it.
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13:49 - 13:51Goal number one, check.
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13:51 - 13:53Now on to the treatment and cure.
-
13:53 - 13:59(Applause)
-
14:03 - 14:06So okay, after all of this ice,
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14:06 - 14:08we know that it was much more
-
14:08 - 14:11than just pouring buckets of
ice water over your head, -
14:11 - 14:12and I really would like to leave you
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14:12 - 14:15with a couple of things that
I'd like you to remember. -
14:15 - 14:17The first thing is,
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14:17 - 14:19every morning when you wake up,
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14:19 - 14:22you can choose to live your day in positivity.
-
14:24 - 14:27Would any of you blame me
-
14:27 - 14:29if I just was in the fetal position
-
14:29 - 14:32and pulled the covers
over my head every day? -
14:32 - 14:34No, I don't think anybody would blame me,
-
14:34 - 14:37but Pete has inspired us to wake up
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14:37 - 14:40every morning and be
positive and proactive. -
14:40 - 14:43I actually had to ditch support groups
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14:43 - 14:46because everybody was in there saying that
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14:46 - 14:48spraying their lawns with chemicals,
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14:48 - 14:49that's why they got ALS,
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14:49 - 14:51and I was like, "I don't think so,"
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14:51 - 14:55but I had to get away from the negativity.
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14:55 - 14:58The second thing I want to leave you with
-
14:58 - 15:01is the person at the
middle of the challenge -
15:01 - 15:04has to be willing to have
the mental toughness -
15:04 - 15:08to put themselves out there.
-
15:08 - 15:10Pete still goes to baseball games
-
15:10 - 15:13and he still sits with his
teammates in the dugout, -
15:13 - 15:16and he hangs his gravity feed bag
-
15:16 - 15:18right on the cages.
-
15:18 - 15:19You'll see the kids, they're
up there hanging it up. -
15:19 - 15:21"Pete, is that okay?" "Yup."
-
15:21 - 15:24And then they put it
right into his stomach. -
15:24 - 15:28Because he wants them to see
what the reality of this is, -
15:28 - 15:31and how he's never, ever going to give up.
-
15:31 - 15:33And the third thing I
want to leave you with: -
15:33 - 15:37If you ever come across a situation
-
15:37 - 15:40that you see as so unacceptable,
-
15:40 - 15:44I want you to dig down as deep as you can
-
15:44 - 15:46and find your best mother bear
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15:46 - 15:49and go after it.
-
15:49 - 15:54(Applause)
-
16:23 - 16:25Thank you.
-
16:25 - 16:29(Applause)
-
16:29 - 16:30I know that I'm running over,
-
16:30 - 16:32but I've got to leave you with this:
-
16:32 - 16:35the gifts that my son has given me.
-
16:35 - 16:38I have had 29 years
-
16:38 - 16:42of having the honor of being the mother
-
16:42 - 16:44of Pete Frates.
-
16:44 - 16:49Pete Frates has been inspiring
and leading his whole life. -
16:49 - 16:51He's thrown out kindness,
-
16:51 - 16:55and all that kindness
has come back to him. -
16:55 - 17:01He walks the face of the Earth
right now and knows why he's here. -
17:01 - 17:04What a gift.
-
17:04 - 17:07The second thing that my son has given me
-
17:07 - 17:10is he's given me my mission in life.
-
17:10 - 17:12Now I know why I'm here.
-
17:12 - 17:15I'm going to save my son,
-
17:15 - 17:18and if it doesn't happen in time for him,
-
17:18 - 17:20I'm going to work so that no other mother
-
17:20 - 17:24has to go through what I'm going through.
-
17:24 - 17:27And the third thing,
and last but not least -
17:27 - 17:30gift that my son has given me,
-
17:30 - 17:32as an exclamation point
-
17:32 - 17:33to the miraculous month
-
17:33 - 17:37of August 2014:
-
17:37 - 17:43That girlfriend that he went to get on
the night of diagnosis is now his wife, -
17:43 - 17:52and Pete and Julie have given me my
granddaughter, Lucy Fitzgerald Frates. -
17:52 - 17:57Lucy Fitzgerald Frates came two weeks early
-
17:57 - 17:59as the exclamation point
-
17:59 - 18:03on August 31st, 2014.
-
18:03 - 18:05And so —
-
18:05 - 18:14(Applause) —
-
18:14 - 18:18And so let me leave you with
Pete's words of inspiration -
18:18 - 18:25that he would use to classmates,
coworkers and teammates. -
18:25 - 18:28Be passionate.
-
18:28 - 18:31Be genuine.
-
18:31 - 18:34Be hardworking.
-
18:34 - 18:38And don't forget to be great.
-
18:38 - 18:40Thank you. (Applause)
- Title:
- Meet the mom who started the Ice Bucket Challenge
- Speaker:
- Nancy Frates
- Description:
-
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:
- TEDTalks
- Duration:
- 18:53
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Krystian Aparta
Title changed from "Why my family started the ALS Ice Bucket Challenge. The rest is history" to "Meet the mom who started the Ice Bucket Challenge."