Meet the mom who started the Ice Bucket Challenge | Nancy Frates | TEDxBoston
-
0:07 - 0:09Well, good afternoon.
-
0:09 - 0:11How many of you
-
0:11 - 0:14took the ALS Ice Bucket Challenge?
-
0:14 - 0:15(Applause)
-
0:15 - 0:16Woo hoo!
-
0:17 - 0:20Well, I have to tell you,
from the bottom of our hearts, -
0:20 - 0:23thank you so very, very much.
-
0:23 - 0:26Do you know to date the ALS Association
-
0:26 - 0:29has raised 125 million dollars?
-
0:31 - 0:34Woo hoo! (Applause)
-
0:38 - 0:41It takes me back to the summer of 2011.
-
0:41 - 0:43My family, my kids had all grown up.
-
0:43 - 0:45We were officially empty nesters,
-
0:45 - 0:48and we decided,
let's go on a family vacation. -
0:48 - 0:50Jenn, my daughter, and my son-in-law
-
0:50 - 0:52came down from New York.
-
0:52 - 0:53My youngest, Andrew,
-
0:53 - 0:56he came down from his home in Charlestown
-
0:56 - 0:57where he was working in Boston,
-
0:57 - 0:58and my son Pete,
-
0:58 - 1:01who had played at Boston College,
baseball, -
1:01 - 1:04had played baseball professionally
in Europe, -
1:04 - 1:10and had now come home and was selling
group insurance, he also joined us. -
1:10 - 1:11And one night, I found myself
-
1:11 - 1:12having a beer with Pete,
-
1:12 - 1:15and Pete was looking at me
and he just said, -
1:15 - 1:17"You know, Mom, I don't know,
-
1:17 - 1:21selling group insurance
is just not my passion." -
1:21 - 1:27He said, "I just don't feel
I'm living up to my potential. -
1:27 - 1:30I don't feel this is my mission in life."
-
1:30 - 1:33And he said, "You know,
oh by the way, Mom, -
1:33 - 1:36I have to leave early from vacation
-
1:36 - 1:41because my inter-city league team
that I play for made the playoffs, -
1:41 - 1:45and I have to get back to Boston
because I can't let my team down. -
1:45 - 1:48I'm just not as passionate about my job
-
1:48 - 1:50as I am about baseball."
-
1:50 - 1:54So off Pete went,
and left the family vacation - -
1:54 - 1:56break a mother's heart -
-
1:56 - 2:00and he went,
and we followed four days later -
2:00 - 2:02to see the next playoff game.
-
2:02 - 2:05We're at the playoff game,
Pete's at the plate, -
2:05 - 2:08and a fastball's coming in,
-
2:08 - 2:10and it hits him on the wrist.
-
2:10 - 2:11Oh, Pete.
-
2:11 - 2:15His wrist went completely limp, like this.
-
2:15 - 2:17So for the next six months,
-
2:17 - 2:19Pete went back to his home in Southie,
-
2:19 - 2:22kept working that unpassionate job,
-
2:22 - 2:24and was going to doctors
-
2:24 - 2:25to see what was wrong with this wrist
-
2:25 - 2:27that never came back.
-
2:27 - 2:29Six months later, in March,
-
2:29 - 2:32he called my husband and me, and he said,
-
2:32 - 2:33"Oh, Mom and Dad, we have a doctor
-
2:33 - 2:36that found a diagnosis for that wrist.
-
2:36 - 2:39Do you want to come
with the doctor's appointment with me?" -
2:39 - 2:42I said, "Sure, we'll come in."
-
2:42 - 2:44That morning, Pete, John and I
-
2:44 - 2:47all got up, got dressed, got in our cars -
-
2:47 - 2:48three separate cars
-
2:48 - 2:50because we were going to go to work
-
2:50 - 2:53after the doctor's appointment to find out
what happened to the wrist. -
2:53 - 2:56We walked into the neurologist's office,
sat down, -
2:56 - 2:58four doctors walk in,
-
2:58 - 3:00and the head neurologist sits down.
-
3:00 - 3:03And he says, "Well, Pete,
we've been looking at all the tests, -
3:03 - 3:06and I have to tell you,
it's not a sprained wrist, -
3:06 - 3:08it's not a broken wrist,
-
3:08 - 3:10it's not nerve damage in the wrist,
-
3:10 - 3:12it's not an infection,
-
3:12 - 3:15it's not Lyme disease."
-
3:16 - 3:20And there was this
deliberate elimination going up, -
3:20 - 3:21and I was thinking to myself,
-
3:21 - 3:24where is he going with this?
-
3:24 - 3:27Then he put his hands on his knees,
-
3:27 - 3:30he looked right at my 27-year-old kid,
and said, -
3:30 - 3:33"I don't know how to tell
a 27-year-old this: -
3:33 - 3:35Pete, you have ALS."
-
3:37 - 3:39ALS?
-
3:39 - 3:43I had had a friend
whose 80-year-old father had ALS. -
3:44 - 3:46I looked at my husband, he looked at me,
-
3:46 - 3:49and then we looked at the doctor,
and we said, "ALS? -
3:49 - 3:51Okay, what treatment? Let's go.
-
3:51 - 3:54What do we do? Let's go."
-
3:54 - 3:57And he looked at us, and he said,
"Mr. and Mrs. Frates, -
3:57 - 3:59I'm sorry to tell you this,
-
3:59 - 4:03but there's no treatment
and there's no cure." -
4:04 - 4:06We were the worst culprits.
-
4:06 - 4:09We didn't even understand
-
4:09 - 4:11that it had been 75 years since Lou Gehrig
-
4:11 - 4:16and nothing had been done
in the progress against ALS. -
4:16 - 4:20So we all went home, and Jenn and Dan
-
4:20 - 4:22flew home from Wall Street,
-
4:22 - 4:24Andrew came home from Charlestown,
-
4:24 - 4:27and Pete went to B.C. to pick up
-
4:27 - 4:30his then-girlfriend Julie
and brought her home, -
4:30 - 4:32and six hours later after diagnosis,
-
4:32 - 4:35we're sitting around
having a family dinner, -
4:35 - 4:37and we're having small chat.
-
4:37 - 4:40I don't even remember
cooking dinner that night. -
4:40 - 4:45But then our leader, Pete, set the vision,
-
4:45 - 4:49and talked to us
just like we were his new team. -
4:49 - 4:53He said,
"There will be no wallowing, people." -
4:53 - 4:55He goes, "We're not looking back,
-
4:55 - 4:58we're looking forward.
-
4:58 - 5:03What an amazing opportunity we have
to change the world. -
5:03 - 5:05I'm going to change the face
-
5:05 - 5:09of this unacceptable situation of ALS.
-
5:09 - 5:11We're going to move the needle,
-
5:11 - 5:14and I'm going to get it in front
of philanthropists like Bill Gates." -
5:15 - 5:18And that was it.
We were given our directive. -
5:18 - 5:21So in the days and months that followed,
-
5:21 - 5:24within a week,
we had our brothers and sisters -
5:24 - 5:26and our family come to us,
-
5:26 - 5:29that they were already creating
Team Frate Train. -
5:29 - 5:31Uncle Dave, he was the webmaster;
-
5:31 - 5:34Uncle Artie, he was the accountant;
-
5:34 - 5:37Auntie Dana, she was the graphic artist;
-
5:37 - 5:39and my youngest son, Andrew,
-
5:39 - 5:42quit his job, left his apartment
in Charlestown -
5:42 - 5:46and says, "I'm going to take care
of Pete and be his caregiver." -
5:46 - 5:50Then all those people,
classmates, teammates, -
5:50 - 5:52coworkers that Pete had inspired
-
5:52 - 5:54throughout his whole life,
-
5:54 - 5:58the circles of Pete all started
intersecting with one another, -
5:58 - 6:01and made Team Frate Train.
-
6:03 - 6:05Six months after diagnosis,
-
6:05 - 6:10Pete was given an award
at a research summit for advocacy. -
6:10 - 6:12He got up and gave a very eloquent speech,
-
6:12 - 6:15and at the end of the speech,
there was a panel, -
6:15 - 6:18and on the panel were these
pharmaceutical executives -
6:18 - 6:21and biochemists and clinicians
-
6:21 - 6:23and I'm sitting there
and I'm listening to them -
6:23 - 6:26and most of the content
went straight over my head. -
6:26 - 6:28I avoided every science class
I ever could. -
6:28 - 6:31But I was watching these people,
and I was listening to them, -
6:31 - 6:34and they were saying,
"I, I do this, I do that," -
6:34 - 6:38and there was a real unfamiliarity
between them. -
6:38 - 6:41So at the end of their talk, the panel,
-
6:41 - 6:43they had questions and answers,
-
6:43 - 6:45and boom, my hand went right up,
-
6:45 - 6:47and I get the microphone,
-
6:47 - 6:49and I look at them and I say, "Thank you.
-
6:49 - 6:51Thank you so much for working in ALS.
-
6:51 - 6:53It means so very much to us."
-
6:53 - 6:54I said, "But I do have to tell you
-
6:54 - 6:56that I'm watching your body language
-
6:56 - 6:59and I'm listening to what you're saying.
-
6:59 - 7:03It just doesn't seem like there's a whole
lot of collaboration going on here. -
7:04 - 7:07And not only that, where's the flip chart
-
7:07 - 7:12with the action items and the follow-up
and the accountability? -
7:12 - 7:15What are you going to do
after you leave this room?" -
7:16 - 7:18And then I turned around
-
7:18 - 7:23and there was about 200 pairs of eyes
just staring at me. -
7:25 - 7:28And it was that point that I realized
-
7:29 - 7:33that I had talked about
the elephant in the room. -
7:33 - 7:36Thus my mission had begun.
-
7:36 - 7:39So over the next couple of years,
-
7:39 - 7:42Pete - we've had our highs and our lows.
-
7:42 - 7:45Pete was put on a compassionate use drug.
-
7:45 - 7:48It was hope in a bottle
for the whole ALS community. -
7:48 - 7:50It was in a phase III trial.
-
7:50 - 7:54Then six months later,
the data comes back: no efficacy. -
7:54 - 7:57We were supposed
to have therapies overseas, -
7:57 - 8:00and the rug was pulled out from under us.
-
8:00 - 8:01So for the next two years,
-
8:01 - 8:05we just watched my son
be taken away from me, -
8:05 - 8:08little by little every day.
-
8:09 - 8:11Two and a half years ago,
-
8:11 - 8:14Pete was hitting home runs
at baseball fields. -
8:14 - 8:18Today, Pete's completely paralyzed.
-
8:19 - 8:21He can't hold his head up any longer.
-
8:21 - 8:23He's confined to a motorized wheelchair.
-
8:23 - 8:26He can no longer swallow or eat.
-
8:26 - 8:28He has a feeding tube.
-
8:28 - 8:29He can't speak.
-
8:32 - 8:35He talks with eye gaze technology
-
8:35 - 8:37and a speech generating device,
-
8:37 - 8:39and we're watching his lungs,
-
8:39 - 8:42because his diaphragm
eventually is going to give out -
8:42 - 8:46and then the decision will be made
to put him on a ventilator or not. -
8:46 - 8:51ALS robs the human
of all their physical parts, -
8:52 - 8:55but the brain stays intact.
-
8:57 - 8:59So July 4th, 2014,
-
9:01 - 9:0575th year of Lou Gehrig's
inspirational speech comes, -
9:05 - 9:10and Pete is asked by MLB.com to write
an article in the Bleacher Report. -
9:11 - 9:17And it was very significant, because
he wrote it using his eye gaze technology. -
9:18 - 9:22Twenty days later,
the ice started to fall. -
9:24 - 9:28On July 27th, Pete's roommate
in New York City, -
9:28 - 9:31wearing a Quinn For The Win shirt,
-
9:31 - 9:35signifying Pat Quinn, another ALS patient
known in New York, -
9:35 - 9:37and B.C. shorts
-
9:37 - 9:42said, "I'm taking the ALS
Ice Bucket Challenge," -
9:42 - 9:45picked up the ice, put it over his head.
-
9:45 - 9:49"And I'm nominating ..."
And he sent it up to Boston. -
9:49 - 9:51And that was on July 27th.
-
9:52 - 9:55Over the next couple of days,
our news feed -
9:55 - 9:57was full of family and friends.
-
9:57 - 10:00If you haven't gone back,
the nice thing about Facebook -
10:00 - 10:03is that you have the dates,
you can go back. -
10:03 - 10:06You've got to see Uncle Artie's
human Bloody Mary. -
10:06 - 10:09I'm telling you,
it's one of the best ones, -
10:09 - 10:12and that was probably in day two.
-
10:12 - 10:16By about day four, Uncle Dave,
the webmaster, -
10:16 - 10:18he isn't on Facebook,
-
10:18 - 10:21and I get a text from him,
and it says, "Nancy, -
10:21 - 10:23what the hell is going on?"
-
10:24 - 10:27Uncle Dave gets a hit
every time Pete's website -
10:27 - 10:30is gone onto,
and his phone was blowing up. -
10:30 - 10:33So we all sat down and we realized,
-
10:33 - 10:36money is coming in - how amazing.
-
10:36 - 10:39So we knew awareness
would lead to funding, -
10:39 - 10:42we just didn't know it would
only take a couple of days. -
10:42 - 10:47So we got together, put our best
501(c)(3)s on Pete's website, -
10:47 - 10:49and off we went.
-
10:49 - 10:52So week one, Boston media.
-
10:52 - 10:55Week two, national media.
-
10:55 - 10:57It was during week two
that our neighbor next door -
10:57 - 11:00opened up our door and threw a pizza
-
11:00 - 11:01across the kitchen floor, saying,
-
11:01 - 11:04"I think you people
might need food in there." -
11:04 - 11:07(Laughter)
-
11:07 - 11:11Week three, celebrities -
Entertainment Tonight, -
11:11 - 11:13Access Hollywood.
-
11:13 - 11:17Week four, global -
BBC, Irish Radio. -
11:19 - 11:22Did anyone see "Lost In Translation"?
-
11:22 - 11:25My husband did Japanese television.
-
11:25 - 11:26It was interesting.
-
11:26 - 11:28(Laughter)
-
11:28 - 11:31And those videos, the popular ones.
-
11:35 - 11:39Paul Bissonnette's glacier video,
incredible. -
11:39 - 11:41How about the redemption nuns of Dublin?
-
11:41 - 11:43Who's seen that one?
-
11:43 - 11:46It's absolutely fantastic.
-
11:46 - 11:48J.T., Justin Timberlake.
-
11:48 - 11:51That's when we knew,
that was a real A-list celebrity. -
11:51 - 11:54I go back on my texts, and I can see
-
11:54 - 11:58"JT! JT!" My sister texting me.
-
11:59 - 12:02Angela Merkel, the chancellor of Germany.
-
12:02 - 12:04Incredible.
-
12:05 - 12:07And the ALS patients,
-
12:07 - 12:10you know what their favorite ones are,
and their families'? -
12:10 - 12:12All of them.
-
12:12 - 12:16Because this misunderstood
and underfunded "rare" disease, -
12:16 - 12:22they just sat and watched people
saying it over and over: "ALS, ALS." -
12:23 - 12:26It was unbelievable.
-
12:26 - 12:28And those naysayers,
-
12:28 - 12:31let's just talk a couple of stats,
shall we? -
12:31 - 12:33Okay, so the ALS Association,
-
12:33 - 12:38they think by year end,
it'll be 160 million dollars. -
12:38 - 12:40ALS TDI in Cambridge,
-
12:40 - 12:42they raised three million dollars.
-
12:42 - 12:43Well, guess what?
-
12:43 - 12:47They had a clinical trial for a drug
that they've been developing. -
12:47 - 12:50It was on a three-year track for funding.
-
12:50 - 12:52Two months.
-
12:52 - 12:54It's coming out starting in two months.
-
12:54 - 12:56(Applause)
-
13:03 - 13:05And YouTube has reported
-
13:05 - 13:11that over 150 countries have posted
Ice Bucket Challenges for ALS. -
13:12 - 13:17And Facebook, 2.5 million videos,
-
13:19 - 13:22and I had the awesome adventure
-
13:22 - 13:25visiting the Facebook campus last week,
-
13:25 - 13:28and I said to them, "I know
what it was like in my house. -
13:28 - 13:31I can't imagine what it was like
around here." -
13:31 - 13:34All she said was, "Jaw-dropping."
-
13:35 - 13:37And my family's favorite video?
-
13:40 - 13:42Bill Gates.
-
13:43 - 13:46Because the night Pete was diagnosed,
-
13:46 - 13:49he told us that he was going to get ALS
-
13:49 - 13:53in front of philanthropists
like Bill Gates, -
13:54 - 13:55and he did it.
-
13:55 - 13:58Goal number one, check.
-
13:58 - 14:00Now on to the treatment and cure.
-
14:00 - 14:03(Applause)
-
14:10 - 14:12So okay, after all of this ice,
-
14:12 - 14:14we know that it was much more
-
14:14 - 14:17than just pouring buckets of ice water
over your head, -
14:17 - 14:19and I really would like to leave you
-
14:19 - 14:22with a couple of things
that I'd like you to remember. -
14:22 - 14:24The first thing is,
-
14:24 - 14:26every morning when you wake up,
-
14:26 - 14:30you can choose to live your day
in positivity. -
14:31 - 14:33Would any of you blame me
-
14:33 - 14:35if I just was in the fetal position
-
14:35 - 14:39and pulled the covers over my head
every day? -
14:39 - 14:41No, I don't think anybody would blame me,
-
14:41 - 14:44but Pete has inspired us to wake up
-
14:44 - 14:47every morning
and be positive and proactive. -
14:47 - 14:50I actually had to ditch support groups
-
14:50 - 14:52because everybody was in there saying
-
14:52 - 14:54that spraying their lawns with chemicals,
-
14:54 - 14:56that's why they got ALS,
-
14:56 - 14:58and I was like, "I don't think so,"
-
14:58 - 15:01but I had to get away from the negativity.
-
15:03 - 15:05The second thing I want to leave you with
-
15:05 - 15:08is the person at the middle
of the challenge -
15:08 - 15:11has to be willing to have
the mental toughness -
15:11 - 15:13to put themselves out there.
-
15:14 - 15:17Pete still goes to baseball games
-
15:17 - 15:19and he still sits with his teammates
in the dugout, -
15:19 - 15:23and he hangs his gravity feed bag
-
15:23 - 15:24right on the cages.
-
15:24 - 15:27You'll see the kids,
they're up there hanging it up. -
15:27 - 15:28"Pete, is that okay?" "Yup."
-
15:28 - 15:30And then they put it
right into his stomach. -
15:31 - 15:34Because he wants them to see
what the reality of this is, -
15:34 - 15:37and how he's never,
ever going to give up. -
15:38 - 15:40And the third thing
I want to leave you with: -
15:40 - 15:43If you ever come across a situation
-
15:43 - 15:46that you see as so unacceptable,
-
15:46 - 15:50I want you to dig down as deep as you can
-
15:50 - 15:53and find your best mother bear
-
15:53 - 15:55and go after it.
-
15:55 - 16:00(Applause)
-
16:29 - 16:31Thank you.
-
16:34 - 16:36(Applause ends)
-
16:36 - 16:37I know that I'm running over,
-
16:37 - 16:39but I've got to leave you with this:
-
16:39 - 16:42the gifts that my son has given me.
-
16:42 - 16:45I have had 29 years
-
16:45 - 16:49of having the honor of being the mother
-
16:49 - 16:50of Pete Frates.
-
16:50 - 16:56Pete Frates has been inspiring
and leading his whole life. -
16:56 - 16:58He's thrown out kindness,
-
16:58 - 17:01and all that kindness
has come back to him. -
17:02 - 17:07He walks the face of the Earth
right now and knows why he's here. -
17:08 - 17:10What a gift.
-
17:10 - 17:13The second thing that my son has given me
-
17:13 - 17:16is he's given me my mission in life.
-
17:17 - 17:19Now I know why I'm here.
-
17:19 - 17:21I'm going to save my son,
-
17:21 - 17:24and if it doesn't happen in time for him,
-
17:24 - 17:27I'm going to work so that no other mother
-
17:27 - 17:29has to go through what I'm going through.
-
17:31 - 17:33And the third thing,
and last but not least -
17:33 - 17:36gift that my son has given me,
-
17:36 - 17:38as an exclamation point
-
17:38 - 17:40to the miraculous month
-
17:40 - 17:42of August 2014:
-
17:44 - 17:49That girlfriend that he went to get
on the night of diagnosis is now his wife, -
17:50 - 17:56and Pete and Julie have given me
my granddaughter, Lucy Fitzgerald Frates. -
17:58 - 18:02Lucy Fitzgerald Frates
came two weeks early -
18:03 - 18:06as the exclamation point
-
18:06 - 18:08on August 31st, 2014.
-
18:10 - 18:11And so -
-
18:11 - 18:15(Applause) -
-
18:20 - 18:24And so let me leave you
with Pete's words of inspiration -
18:24 - 18:29that he would use to classmates,
coworkers and teammates. -
18:31 - 18:33Be passionate.
-
18:35 - 18:37Be genuine.
-
18:37 - 18:39Be hardworking.
-
18:40 - 18:44And don't forget to be great.
-
18:44 - 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 |