TEDxBoston
Nancy Frates: Meet the mom who started the Ice Bucket Challenge
演講人：南希·弗拉特斯: 聽漸凍人冰桶挑戰發起人—也是ㄧ位母親—怎麼說。
Filmed:
Readability: 3.8
1,072,268 views
27 歲的皮特·弗拉特斯在棒球比賽時傷到了手腕，但是診斷結果出乎他意料：不是骨折，而是 ALS ：肌萎縮性脊髓側索硬化症，即俗稱的漸凍人症。肌萎縮性脊髓側索硬化症會導致癱瘓和死亡，無法治愈。儘管如此，皮特還是看到了機會，讓人們了解這一疾病。在演講中，他勇敢的母親講到了他們全家發起漸凍人冰桶挑戰的故事，高興地看到從賈斯汀到比爾·蓋茨以及眾多人都參與了進來。如果你接受這一挑戰，那就進入下一步：在上傳自己的冰桶挑戰短片時，分享這一演講。
Nancy Frates - Mother + ALS Advocate
Nancy Frates and her family have raised a projected $160 million for ALS research in 2014. How? They kicked off the ALS Ice Bucket Challenge to honor 29-year-old Pete Frates. Full bio
Nancy Frates and her family have raised a projected $160 million for ALS research in 2014. How? They kicked off the ALS Ice Bucket Challenge to honor 29-year-old Pete Frates. Full bio
Double-click the English transcript below to play the video.
00:12
Well, good afternoon.
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各位，下午好。
00:14
How many of you
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你們中有多少人
00:16
took the ALS Ice Bucket Challenge?
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參加了ALS（肌萎縮側索硬化症）
漸凍人冰桶挑戰？
漸凍人冰桶挑戰？
00:19
(Applause)
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（掌聲）
00:20
Woo hoo!
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哇噢！
00:22
Well, I have to tell you, from
the bottom of our hearts,
the bottom of our hearts,
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我要發自肺腑地告訴你們，
00:26
thank you so very, very much.
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非常非常感謝你們。
00:28
Do you know to date the ALS Association
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你們知道嗎，
到現在漸凍人協會已經募集到了
到現在漸凍人協會已經募集到了
00:31
has raised 125 million dollars?
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一億兩千五百萬美元？
00:36
Woo hoo! (Applause)
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哇噢 ！（掌聲）
00:43
It takes me back to the summer of 2011.
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那是在 2011 年夏，
00:46
My family, my kids had all grown up.
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我們全家，孩子們全都長大成人了。
00:48
We were officially empty nesters,
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我們夫婦成了標準的空巢老人，
00:50
and we decided, let's
go on a family vacation.
go on a family vacation.
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我們決定，全家來一次親子遊。
00:53
Jenn, my daughter, and my son-in-law
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珍，我女兒和女婿
00:55
came down from New York.
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從紐約過來。
00:56
My youngest, Andrew,
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我的小兒子安德魯
00:58
he came down from his home in Charlestown
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從他查爾斯頓的家來了。
01:00
where he was working in Boston,
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他當時在波士頓工作，
01:02
and my son Pete,
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還有我的另外一個兒子皮特
01:03
who had played at
Boston College, baseball,
Boston College, baseball,
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在波士頓學院時是棒球選手，
01:06
had played baseball
professionally in Europe,
professionally in Europe,
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後來在歐洲打職棒，
01:09
and had now come home and was selling
group insurance, he also joined us.
group insurance, he also joined us.
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現在回來了，
當時他在賣團體保險，他也來了。
當時他在賣團體保險，他也來了。
01:14
And one night, I found myself
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有天晚上，我和皮特
01:15
having a beer with Pete,
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在喝啤酒聊天，
01:17
and Pete was looking at
me and he just said,
me and he just said,
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皮特看著我，然後對我說：
01:20
"You know, Mom, I don't know,
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「老媽，我有點糾結，
01:22
selling group insurance
is just not my passion."
is just not my passion."
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我對賣團體保險
根本沒有任何激情。」
根本沒有任何激情。」
01:26
He said, "I just don't feel
I'm living up to my potential.
I'm living up to my potential.
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他說道：「我感覺不到任何成就感，
01:32
I don't feel this is my mission in life."
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不覺得這是我的人生使命。」
01:35
And he said, "You know,
oh by the way, Mom,
oh by the way, Mom,
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他接著說：「還有，老媽，
01:38
I have to leave early from vacation
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我得提前結束假期，
01:41
because my inter-city league team
that I play for made the playoffs,
that I play for made the playoffs,
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我所在的城際聯盟隊進了季後賽，
01:45
and I have to get back to Boston
because I can't let my team down.
because I can't let my team down.
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我要回到波士頓，
我不能讓隊友失望。
我不能讓隊友失望。
01:50
I'm just not as passionate about my job
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我對工作的熱忱完全
01:53
as I am about baseball."
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比不上棒球。」
01:56
So off Pete went, and
left the family vacation —
left the family vacation —
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就這樣，皮特提前走了，
離開了全家人一起的旅行，
離開了全家人一起的旅行，
01:59
break a mother's heart —
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讓老媽很是受傷，
02:00
and he went, and we
followed four days later
followed four days later
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他走後四天，
我們也結束假期回來了，
我們也結束假期回來了，
02:05
to see the next playoff game.
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去看下一次季後賽。
02:07
We're at the playoff game,
Pete's at the plate,
Pete's at the plate,
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我們在季後賽現場觀看，
皮特在本壘，
皮特在本壘，
02:10
and a fastball's coming in,
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來了一個快球，
02:12
and it hits him on the wrist.
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擊中了他的手腕。
02:15
Oh, Pete.
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天啊，皮特！
02:17
His wrist went completely limp, like this.
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他的手腕完全軟了，就像這樣。
02:20
So for the next six months,
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接下來的六個月，
02:21
Pete went back to his home in Southie,
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皮特回到了他在南波士頓的家，
02:24
kept working that unpassionate job,
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繼續他沒有熱忱的工作，
02:27
and was going to doctors
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看醫生，
02:28
to see what was wrong with this wrist
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看看手腕到底是怎麼了，
02:30
that never came back.
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為什麼總也不好。
02:32
Six months later, in March,
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六個月後，三月份，
02:34
he called my husband
and me, and he said,
and me, and he said,
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他打電話給我先生和我，問道，
02:36
"Oh, Mom and Dad, we have a doctor
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「老媽老爸，現在有個
02:38
that found a diagnosis for that wrist.
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能診斷我的手腕的醫生。
02:41
Do you want to come with the
doctor's appointment with me?"
doctor's appointment with me?"
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你們願不願意陪我一起去見醫生？」
02:44
I said, "Sure, we'll come in."
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我說：「當然，我們願意。」
02:46
That morning, Pete, John and I
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那天早上，皮特、約翰和我
02:49
all got up, got dressed, got in our cars —
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全都起來了，穿好衣服，上了車——
02:52
three separate cars
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三輛車，
02:53
because we were going to go to work
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因為見過醫生，
查清楚手腕到底怎麼了後，
查清楚手腕到底怎麼了後，
02:55
after the doctor's appointment to
find out what happened to the wrist.
find out what happened to the wrist.
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我們各自還要去上班。
02:58
We walked into the
neurologist's office, sat down,
neurologist's office, sat down,
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我們走進神經專家的辦公室，
坐了下來，
坐了下來，
03:01
four doctors walk in,
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進來了四個醫生，
03:02
and the head neurologist sits down.
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首席醫生坐了下來。
03:05
And he says, "Well, Pete, we've
been looking at all the tests,
been looking at all the tests,
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他說道：「皮特，
我們看了所有的檢查結果，
我們看了所有的檢查結果，
03:08
and I have to tell you,
it's not a sprained wrist,
it's not a sprained wrist,
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我要告訴你，這不是腕關節扭傷，
03:11
it's not a broken wrist,
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也不是腕關節骨折，
03:13
it's not nerve damage in the wrist,
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不是腕關節神經損傷，
03:15
it's not an infection,
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不是發炎，
03:17
it's not Lyme disease."
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也不是萊姆病。」
03:21
And there was this deliberate
elimination going up,
elimination going up,
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就這樣逐個逐個地排除，
03:25
and I was thinking to myself,
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我就在想，
03:26
where is he going with this?
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接下來他要說什麼？
03:30
Then he put his hands on his knees,
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然後他把自己的雙手放到膝蓋上，
03:32
he looked right at my
27-year-old kid, and said,
27-year-old kid, and said,
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雙眼直直地看著我
27 歲的兒子，然後說：
27 歲的兒子，然後說：
03:35
"I don't know how to
tell a 27-year-old this:
tell a 27-year-old this:
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「我不知道該怎麼
告訴一個 27 歲年輕人，
告訴一個 27 歲年輕人，
03:38
Pete, you have ALS."
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皮特，這是肌萎縮側索硬化症。」
03:42
ALS?
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肌萎縮側索硬化症？（漸凍人症）
03:44
I had had a friend whose
80-year-old father had ALS.
80-year-old father had ALS.
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我有個朋友的父親，
80 歲了，就是這病。
80 歲了，就是這病。
03:49
I looked at my husband, he looked at me,
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我和我先生對視了一下，
03:51
and then we looked at the
doctor, and we said, "ALS?
doctor, and we said, "ALS?
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我們一齊看著醫生，
問道：「漸凍人症？
問道：「漸凍人症？
03:53
Okay, what treatment? Let's go.
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好吧，怎麼治？我們去治。
03:56
What do we do? Let's go."
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要做什麼？我們去做。」
03:59
And he looked at us, and he
said, "Mr. and Mrs. Frates,
said, "Mr. and Mrs. Frates,
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然後他看著我們，說道：
「弗拉特斯夫婦，
「弗拉特斯夫婦，
04:02
I'm sorry to tell you this,
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我非常遺憾地告訴你們，
04:04
but there's no treatment
and there's no cure."
and there's no cure."
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這種病沒法治，治不了。」
04:08
We were the worst culprits.
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我們簡直蠢到家了。
04:11
We didn't even understand
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我們甚至根本不知道
04:14
that it had been 75 years since Lou Gehrig
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自從知名棒球手
盧·賈里格罹患這種病後，
盧·賈里格罹患這種病後，
04:16
and nothing had been done
in the progress against ALS.
in the progress against ALS.
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75 年來，在對抗漸凍人症方面，
醫學界尚未有任何進展。
醫學界尚未有任何進展。
04:21
So we all went home, and Jenn and Dan
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就這樣我們回家了，
珍和丹從紐約華爾街飛了回來，
04:24
flew home from Wall Street,
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04:27
Andrew came home from Charlestown,
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安德魯從查爾斯頓回來了，
04:29
and Pete went to B.C. to pick up
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皮特去了波士頓學院
04:32
his then-girlfriend Julie
and brought her home,
and brought her home,
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接他當時還是女朋友的朱莉，
帶她回來，
帶她回來，
04:35
and six hours later after diagnosis,
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診斷結果出來 6 個小時後，
04:37
we're sitting around
having a family dinner,
having a family dinner,
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我們全家人坐在晚餐餐桌前，
04:40
and we're having small chat.
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簡單地聊了起來。
04:42
I don't even remember
cooking dinner that night.
cooking dinner that night.
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我甚至都不記得那天我做了晚飯。
04:45
But then our leader, Pete, set the vision,
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然後，我們的領袖皮特，
設定了目標，
設定了目標，
04:51
and talked to us just like
we were his new team.
we were his new team.
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他說話時的語氣就像
我們是他的新隊友。
我們是他的新隊友。
04:54
He said, "There will be
no wallowing, people."
no wallowing, people."
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他說：「各位，不要沮喪。」
04:58
He goes, "We're not looking back,
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他接著說：「我們不要往後看，
05:00
we're looking forward.
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我們要往前看。
05:02
What an amazing opportunity
we have to change the world.
we have to change the world.
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這是多麼絕佳的機會來改變世界 。
05:08
I'm going to change the face
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我要改變漸凍人症這種目前
05:10
of this unacceptable situation of ALS.
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讓人無法接受的現狀。
05:14
We're going to move the needle,
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我們要快速行動起來，
05:15
and I'm going to get it in front
of philanthropists like Bill Gates."
of philanthropists like Bill Gates."
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我要讓比爾·蓋茨這樣的
慈善家了解到這種疾病。」
慈善家了解到這種疾病。」
05:20
And that was it. We
were given our directive.
were given our directive.
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就這樣，我們得到了前進的方向。
05:23
So in the days and months that followed,
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在接下來的日子裡，
05:26
within a week, we had
our brothers and sisters
our brothers and sisters
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一周之內，我們把兄弟姐妹
05:29
and our family come to us,
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親朋好友召集到了家裡來，
05:31
that they were already
creating Team Frate Train.
creating Team Frate Train.
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他們已經著手打造「弗拉特斯應援團」
(Team Frate Train) 專頁。
(Team Frate Train) 專頁。
05:34
Uncle Dave, he was the webmaster;
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大維叔叔是我們的網路管理員，
05:36
Uncle Artie, he was the accountant;
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亞提叔叔是會計，
05:39
Auntie Dana, she was the graphic artist;
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戴娜姑媽是平面設計，
05:42
and my youngest son, Andrew,
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我的小兒子安德魯
05:44
quit his job, left his
apartment in Charlestown
apartment in Charlestown
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辭工，離開他在查爾斯頓的家。
05:47
and says, "I'm going to take care
of Pete and be his caregiver."
of Pete and be his caregiver."
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他說：
「我來照顧皮特，做他的護士。」
「我來照顧皮特，做他的護士。」
05:51
Then all those people,
classmates, teammates,
classmates, teammates,
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然後所有這些人，同學、隊友，
05:54
coworkers that Pete had inspired
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皮特長期以來
05:57
throughout his whole life,
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提攜共事的同事，
05:59
the circles of Pete all started
intersecting with one another,
intersecting with one another,
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皮特的人脈，開始彼此溝通聯絡，
06:03
and made Team Frate Train.
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最後就有了臉書上的
「弗拉特斯應援團」專頁。
「弗拉特斯應援團」專頁。
06:07
Six months after diagnosis,
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診斷結果出來六個月後，
06:10
Pete was given an award at a
research summit for advocacy.
research summit for advocacy.
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皮特在一次研究高峰會上
因倡導此病獲獎。
因倡導此病獲獎。
06:15
He got up and gave a very eloquent speech,
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他站了出來，
發表了一場動人的演講，
發表了一場動人的演講，
06:17
and at the end of the
speech, there was a panel,
speech, there was a panel,
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演講結束後是討論會，
06:20
and on the panel were these
pharmaceutical executives
pharmaceutical executives
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討論會成員是製藥企業的高管、
06:23
and biochemists and clinicians
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生物化學家和臨床醫生。
06:25
and I'm sitting there and
I'm listening to them
I'm listening to them
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我就坐在那裡，聽他們在講，
06:28
and most of the content
went straight over my head.
went straight over my head.
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講的東西我全然不懂。
06:31
I avoided every science
class I ever could.
class I ever could.
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我讀書時，科學方面的課程
全沒好好聽講。
全沒好好聽講。
06:33
But I was watching these people,
and I was listening to them,
and I was listening to them,
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但是，我就看著這些人，
聽他們在講，
聽他們在講，
06:36
and they were saying,
"I, I do this, I do that,"
"I, I do this, I do that,"
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他們表示「我做這個，我做那個，」
06:39
and there was a real
unfamiliarity between them.
unfamiliarity between them.
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他們彼此之間沒有任何默契。
06:43
So at the end of their talk, the panel,
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在討論會結束後，
06:46
they had questions and answers,
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是問答環節，
06:48
and boom, my hand went right up,
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我的手就嗖地舉了起來，
06:50
and I get the microphone,
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我走到麥克風前，
06:51
and I look at them and I say, "Thank you.
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看著他們，我說：「謝謝你們。
06:53
Thank you so much for working in ALS.
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非常感謝你們在漸凍人方面的工作，
06:56
It means so very much to us."
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這對我們來說非常重要。」
06:57
I said, "But I do have to tell you
145
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我說：「但是，我想告訴你們的是，
06:59
that I'm watching your body language
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我在觀察你們的肢體語言，
07:01
and I'm listening to what you're saying.
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我也在聽你們所講的東西。
07:03
It just doesn't seem like there's a whole
lot of collaboration going on here.
lot of collaboration going on here.
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但是看起來似乎是各說各話，
沒有太多的協調和聯合。
沒有太多的協調和聯合。
07:09
And not only that, where's the flip chart
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還不止此，怎麼沒有解釋性掛圖
07:12
with the action items and the
follow-up and the accountability?
follow-up and the accountability?
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寫明要做的事情，後續步驟，
以及各方負責的事項？
以及各方負責的事項？
07:17
What are you going to do
after you leave this room?"
after you leave this room?"
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會議結束後，你們會做些什麼？」
07:21
And then I turned around
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然後我轉過身來，
07:23
and there was about 200 pairs
of eyes just staring at me.
of eyes just staring at me.
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差不多有 200 雙眼睛
正在注視著我。
正在注視著我。
07:30
And it was that point that I realized
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就在那時，我意識到，
07:34
that I had talked about
the elephant in the room.
the elephant in the room.
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我講的這些才是要點，
才是最該做的事。
才是最該做的事。
07:38
Thus my mission had begun.
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就這樣我的使命開始了。
07:41
So over the next couple of years,
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接下來的幾年，
07:44
Pete — we've had our highs and our lows.
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皮特—我們磕磕絆絆起起落落。
07:47
Pete was put on a compassionate use drug.
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2438
皮特接受特許藥物的治療。
07:49
It was hope in a bottle for
the whole ALS community.
the whole ALS community.
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也是所有漸凍人社群的最後希望。
07:53
It was in a phase III trial.
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這種藥物還在臨床試驗的第三階段。
07:55
Then six months later, the
data comes back: no efficacy.
data comes back: no efficacy.
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六個月後，數據回來了：
沒有任何療效。
沒有任何療效。
07:59
We were supposed to
have therapies overseas,
have therapies overseas,
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我們還以為會有效果，
繼續去境外接著治療，
繼續去境外接著治療，
08:02
and the rug was
pulled out from under us.
pulled out from under us.
164
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2149
但是最後的救命稻草也沒有了。
08:04
So for the next two years,
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接下來的兩年，
08:06
we just watched my son
be taken away from me,
be taken away from me,
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我們只能眼睜睜看著兒子一天天，
08:10
little by little every day.
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一點點被病魔拖垮。
08:14
Two and a half years ago,
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兩年半前，
08:16
Pete was hitting home
runs at baseball fields.
runs at baseball fields.
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皮特還在棒球場上打全壘打。
08:20
Today, Pete's completely paralyzed.
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今天，皮特已經徹底癱瘓了。
08:23
He can't hold his head up any longer.
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甚至連頭也抬不起來了。
08:26
He's confined to a motorized wheelchair.
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只能蜷縮在電動輪椅上。
08:28
He can no longer swallow or eat.
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沒法吞嚥，沒法進食，
08:31
He has a feeding tube.
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進食需要進食管。
08:33
He can't speak.
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他也不能說話了。
08:37
He talks with eye gaze technology
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他需要通過目控技術
08:40
and a speech generating device,
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和一個語音生成設備來說話，
08:42
and we're watching his lungs,
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我們在觀察他的肺，
08:44
because his diaphragm
eventually is going to give out
eventually is going to give out
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因為橫膈膜最終會衰竭，
08:47
and then the decision will be made
to put him on a ventilator or not.
to put him on a ventilator or not.
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到時候我們就得決定
是否給他裝上呼吸器。
是否給他裝上呼吸器。
08:51
ALS robs the human of all their physical
parts, but the brain stays intact.
parts, but the brain stays intact.
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漸凍人症會吞噬人體的所有器官，
但是大腦則保持完整，不受影響。
但是大腦則保持完整，不受影響。
09:01
So July 4th, 2014,
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2014 年 7 月 4 日，
09:06
75th year of Lou Gehrig's
inspirational speech comes,
inspirational speech comes,
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盧·賈里格發表振奮人心的
演講 75 年後，
演講 75 年後，
09:10
and Pete is asked by MLB.com to write
an article in the Bleacher Report.
an article in the Bleacher Report.
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538615
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美國職棒大聯盟邀請皮特
在《看台報告》上撰文。
在《看台報告》上撰文。
09:16
And it was very significant, because he
wrote it using his eye gaze technology.
wrote it using his eye gaze technology.
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7093
非比尋常，因為文章是皮特
通過目控技術寫出來的。
通過目控技術寫出來的。
09:23
Twenty days later,
the ice started to fall.
the ice started to fall.
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20 天後，冰塊開始從冰桶裡面滑落。
09:29
On July 27th, Pete's
roommate in New York City,
roommate in New York City,
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7 月 27 日，皮特在紐約的室友
09:34
wearing a Quinn For The Win shirt,
188
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2609
穿上了「奎恩必勝」的 T 恤，
09:36
signifying Pat Quinn, another
ALS patient known in New York,
ALS patient known in New York,
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奎因是另一位知名的
紐約漸凍人症病人，
紐約漸凍人症病人，
09:40
and B.C. shorts
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2051
和印有「波士頓學院」的短褲，
09:42
said, "I'm taking the ALS
Ice Bucket Challenge,"
Ice Bucket Challenge,"
191
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說道：
「我接受漸凍人症冰桶挑戰，」
「我接受漸凍人症冰桶挑戰，」
09:47
picked up the ice, put it over his head.
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舉起冰桶，從頭倒下。
09:49
"And I'm nominating ..."
And he sent it up to Boston.
And he sent it up to Boston.
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「我提名...」
他提名了波士頓的人繼續接力。
他提名了波士頓的人繼續接力。
09:54
And that was on July 27th.
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3424
那是 7 月 27 日。
09:57
Over the next couple
of days, our news feed
of days, our news feed
195
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2571
接下來的幾天，我們的動態消息
10:00
was full of family and friends.
196
588161
2535
全是親朋好友發來的。
10:02
If you haven't gone back,
the nice thing about Facebook
the nice thing about Facebook
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2678
如果你們還沒有往前翻閱，
臉書有個很棒的功能，
臉書有個很棒的功能，
10:05
is that you have the dates, you can go back.
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593374
2213
你可以選擇日期，
查看當日的內容。
查看當日的內容。
10:07
You've got to see Uncle Artie's
human Bloody Mary.
human Bloody Mary.
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一定要看看亞提叔叔的
「血腥瑪麗」冰桶挑戰短片。
「血腥瑪麗」冰桶挑戰短片。
10:11
I'm telling you, it's one of the best ones,
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3146
我告訴你們，非常之棒，
10:14
and that was probably in day two.
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2962
時間應該就是第二天。
10:17
By about day four, Uncle
Dave, the webmaster,
Dave, the webmaster,
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第四天左右，
我們的網絡管理員大維叔叔，
我們的網絡管理員大維叔叔，
10:21
he isn't on Facebook,
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1973
他還沒有臉書帳號，
10:23
and I get a text from him,
and it says, "Nancy,
and it says, "Nancy,
204
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2887
我收到了他發來的短信，
問道：「南西，
問道：「南西，
10:26
what the hell is going on?"
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614496
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到底是怎麼回事？」
10:29
Uncle Dave gets a hit
every time Pete's website
every time Pete's website
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3597
每次有人看皮特的網站，戴維叔叔
10:32
is gone onto, and his
phone was blowing up.
phone was blowing up.
207
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3023
就會收到信息，他的手機響個不停。
10:36
So we all sat down and we realized,
208
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1855
我們全都坐了下來，我們意識到
10:37
money is coming in — how amazing.
209
625865
3852
捐款來了—真是太棒了。
10:41
So we knew awareness
would lead to funding,
would lead to funding,
210
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2544
我們知道更多人知道情況後
會給我們捐款，
會給我們捐款，
10:44
we just didn't know it would
only take a couple of days.
only take a couple of days.
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2978
我們只是沒有想到會這麼快，
幾天的時間就開始了。
幾天的時間就開始了。
10:47
So we got together, put our best
501(c)(3)s on Pete's website,
501(c)(3)s on Pete's website,
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635239
5157
我們把皮特的網站
申請了非營利組織，
申請了非營利組織，
10:52
and off we went.
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2109
然後勇往直前。
10:54
So week one, Boston media.
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642505
3181
第一周，波士頓媒體開始報導。
10:57
Week two, national media.
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2468
第二周，全國媒體開始報導。
11:00
It was during week two
that our neighbor next door
that our neighbor next door
216
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第二周的時候，我們的隔壁鄰居
11:02
opened up our door and threw a pizza
217
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2392
叩開我們的門，
11:05
across the kitchen floor, saying,
218
653000
2360
從廚房的門縫裡扔進了一個披薩，
11:07
"I think you people might
need food in there."
need food in there."
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655360
2939
說：「我覺得你們應該需要吃的。」
11:10
(Laughter)
220
658299
2205
（笑聲）
11:12
Week three, celebrities —
Entertainment Tonight,
Entertainment Tonight,
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4016
第三周，各界名流如《今晚娛樂》、
11:16
Access Hollywood.
222
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2066
《走進好萊塢》開始報導。
11:18
Week four, global — BBC, Irish Radio.
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666586
6155
第四周，全球媒體——
英國廣播公司、愛爾蘭電台。
英國廣播公司、愛爾蘭電台。
11:24
Did anyone see "Lost In Translation"?
224
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2922
你們有人看過《迷失東京》嗎？
11:27
My husband did Japanese television.
225
675663
2189
我先生接受了日本電視台的採訪。
11:29
It was interesting.
226
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1710
非常棒。
11:31
(Laughter)
227
679562
2052
（笑聲）
11:33
And those videos, the popular ones.
228
681614
5762
還有那些短片，
點擊率比較高的一些。
點擊率比較高的一些。
11:39
Paul Bissonnette's
glacier video, incredible.
glacier video, incredible.
229
687376
4488
曲棍球員保羅比瑟內在冰河公園的
冰桶挑戰短片，太不可思議了。
冰桶挑戰短片，太不可思議了。
11:43
How about the redemption nuns of Dublin?
230
691864
2737
還有都柏林的修女們的冰桶挑戰，
怎麼樣？
怎麼樣？
11:46
Who's seen that one?
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694601
1705
有人看到那個了嗎？
11:48
It's absolutely fantastic.
232
696306
2587
絕對超讚。
11:50
J.T., Justin Timberlake.
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698893
2217
J.T，賈斯汀·提姆布萊克。
11:53
That's when we knew, that
was a real A-list celebrity.
was a real A-list celebrity.
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3769
這個時候，我們知道，
A 咖的大明星們上場了。
A 咖的大明星們上場了。
11:56
I go back on my texts, and I can see
235
704879
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我翻看我的短信，看到我妹妹發來
11:59
"JT! JT!" My sister texting me.
236
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5132
信息告訴我「賈斯汀！賈斯汀！」
12:04
Angela Merkel, the chancellor of Germany.
237
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3248
德國總理安吉拉·默克爾。
12:08
Incredible.
238
716150
1806
不可思議。
12:09
And the ALS patients,
239
717956
2310
漸凍人症患者，還有他們的家人，
12:12
you know what their favorite
ones are, and their families'?
ones are, and their families'?
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3194
你們知道他們最喜歡的是哪個嗎？
12:15
All of them.
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1590
每個都喜歡，全都喜歡。
12:17
Because this misunderstood and
underfunded "rare" disease,
underfunded "rare" disease,
242
725050
4848
因為這一被人誤解，
缺乏科研經費的「罕見」疾病，
缺乏科研經費的「罕見」疾病，
12:21
they just sat and watched people
saying it over and over: "ALS, ALS."
saying it over and over: "ALS, ALS."
243
729898
6480
現在人們可以坐下來，
看大家一次又一次的提及
看大家一次又一次的提及
漸凍人症，漸凍人症。
太不可思議了。
太不可思議了。
12:28
It was unbelievable.
244
736378
3209
12:31
And those naysayers,
245
739587
2043
那些對此嗤之以鼻的人，
12:33
let's just talk a couple
of stats, shall we?
of stats, shall we?
246
741630
2839
我們來看幾個統計數字，好嗎？
12:36
Okay, so the ALS Association,
247
744469
2638
先說漸凍人症協會，
12:39
they think by year end,
it'll be 160 million dollars.
it'll be 160 million dollars.
248
747107
3957
他們相信到年底，
可以募集到一億六千萬美元。
可以募集到一億六千萬美元。
12:43
ALS TDI in Cambridge,
249
751064
2585
位在波士頓劍橋的
漸凍人症治療開發研究所，
漸凍人症治療開發研究所，
12:45
they raised three million dollars.
250
753649
2052
募集到了 300 萬美元。
12:47
Well, guess what?
251
755701
1442
出人意料吧？
12:49
They had a clinical trial for a drug
that they've been developing.
that they've been developing.
252
757143
3294
他們已經對一直在研發的
一種藥物進行了臨床試驗。
一種藥物進行了臨床試驗。
12:52
It was on a three-year track for funding.
253
760437
3116
三年的經費可以無虞了。
12:55
Two months.
254
763553
1487
兩個月。
12:57
It's coming out starting in two months.
255
765040
2288
從開始到現在僅僅兩個月。
12:59
(Applause)
256
767328
3940
（掌聲）
13:05
And YouTube has reported
257
773791
5015
根據 YouTube 的報導，
13:10
that over 150 countries have posted
Ice Bucket Challenges for ALS.
Ice Bucket Challenges for ALS.
258
778806
7078
已經有超過 150 個國家的人們
在上面發布冰桶挑戰的短片。
在上面發布冰桶挑戰的短片。
13:17
And Facebook, 2.5 million videos,
259
785884
6571
臉書上有 250 萬個短片，
13:24
and I had the awesome adventure
260
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3115
上周，我參觀了臉書園區，
13:27
visiting the Facebook campus last week,
261
795570
2720
印象深刻，非常壯觀，
13:30
and I said to them, "I know
what it was like in my house.
what it was like in my house.
262
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2767
我告訴那裡的員工，
「我知道我家裡的情況，
「我知道我家裡的情況，
13:33
I can't imagine what it
was like around here."
was like around here."
263
801057
2620
但是這裡情況真是無法想像。」
13:35
All she said was, "Jaw-dropping."
264
803677
4713
員工們異口同聲地說道，
「嚇死你。」
「嚇死你。」
13:40
And my family's favorite video?
265
808390
4980
要問我們全家最喜歡的短片是哪個？
13:45
Bill Gates.
266
813370
3206
非比爾·蓋茨的莫屬。
13:48
Because the night Pete was diagnosed,
267
816576
3083
因為在皮特的診斷結果出來的當晚，
13:51
he told us that he was going to get ALS in
front of philanthropists like Bill Gates,
front of philanthropists like Bill Gates,
268
819659
7585
他告訴我們，他要把漸凍人症的情況
告訴像比爾·蓋茨這樣的慈善家，
告訴像比爾·蓋茨這樣的慈善家，
13:59
and he did it.
269
827244
1546
現在他做到了。
14:00
Goal number one, check.
270
828790
2470
第一個目標，達到。
14:03
Now on to the treatment and cure.
271
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接下來的目標就是治療和治癒了。
14:05
(Applause)
272
833203
6295
（掌聲）
14:14
So okay, after all of this ice,
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這些冰塊從冰桶裡落下來以後，
14:17
we know that it was much more
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我們知道，這不僅僅是
14:19
than just pouring buckets of
ice water over your head,
ice water over your head,
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把一桶桶冰水澆到頭上的問題，
14:22
and I really would like to leave you
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現在我希望告訴你們一些東西，
14:24
with a couple of things that
I'd like you to remember.
I'd like you to remember.
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讓你們能夠銘記於心。
14:27
The first thing is,
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第一件事是，
14:28
every morning when you wake up,
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每天早上醒來，
14:31
you can choose to live your day in positivity.
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你可以選擇積極向上地度過這一天。
如果我只是蜷縮在床上，
14:36
Would any of you blame me
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14:38
if I just was in the fetal position
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蒙頭大睡，什麼也不管了，
14:40
and pulled the covers
over my head every day?
over my head every day?
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你們會責怪我嗎？
14:44
No, I don't think anybody would blame me,
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不會，我想你們不會，
14:46
but Pete has inspired us to wake up
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但是皮特激勵我們每天早上醒來
14:49
every morning and be
positive and proactive.
positive and proactive.
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積極向上，全力以赴。
14:52
I actually had to ditch support groups
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我實際上還要推掉一些支援團體，
14:55
because everybody was in there saying that
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因為他們中的每個人都在說
14:57
spraying their lawns with chemicals,
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他們在自家的草坪上灑藥，
14:59
that's why they got ALS,
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所以才會得漸凍人症，
15:01
and I was like, "I don't think so,"
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我想說的是：「才不是，」
15:03
but I had to get away from the negativity.
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我要遠離這類負能量。
15:07
The second thing I want to leave you with
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我要告訴你們的第二件事就是，
15:10
is the person at the
middle of the challenge
middle of the challenge
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處在困境挑戰中的人
15:13
has to be willing to have
the mental toughness
the mental toughness
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一定要有堅強的意志力，
15:16
to put themselves out there.
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去克服困難，戰勝挑戰。
15:19
Pete still goes to baseball games
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皮特還是會去棒球比賽現場，
15:22
and he still sits with his
teammates in the dugout,
teammates in the dugout,
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還是會和他的隊友一起坐在休息區，
15:25
and he hangs his gravity feed bag
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他會把進食袋好好地
15:28
right on the cages.
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掛在架子上。
15:29
You'll see the kids, they're
up there hanging it up.
up there hanging it up.
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你會看到這些孩子，他們會幫他掛。
15:31
"Pete, is that okay?" "Yup."
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「皮特，這樣掛可以嗎？」「當然。」
15:32
And then they put it
right into his stomach.
right into his stomach.
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然後他們把導管放進他的腹部。
15:36
Because he wants them to see
what the reality of this is,
what the reality of this is,
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因為他要讓他們看到現實情況，
15:39
and how he's never, ever going to give up.
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並且讓他們看到，他絕對不會放棄。
15:43
And the third thing I
want to leave you with:
want to leave you with:
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我要告訴你們的第三件事：
15:45
If you ever come across a situation
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如果你們有一天遇到
15:48
that you see as so unacceptable,
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不能承受的困境，
15:51
I want you to dig down as deep as you can
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我希望你們能夠盡量
發掘自己內心的感受，
發掘自己內心的感受，
15:55
and find your best mother bear
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找到未來努力的目標和方向，
15:58
and go after it.
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然後堅持不懈地努力。
16:00
(Applause)
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（掌聲）
16:34
Thank you.
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謝謝。
16:36
(Applause)
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（掌聲）
16:40
I know that I'm running over,
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我知道我可能有點超時了，
16:42
but I've got to leave you with this:
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但是我要告訴你們這個：
16:44
the gifts that my son has given me.
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我兒子給我的精神財富。
16:47
I have had 29 years
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29 年來，我很有幸
16:50
of having the honor of being the mother
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能做皮特·弗拉特斯的母親。
16:53
of Pete Frates.
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16:55
Pete Frates has been inspiring
and leading his whole life.
and leading his whole life.
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皮特·弗拉特斯一直
積極向上，鼓舞他人。
積極向上，鼓舞他人。
17:00
He's thrown out kindness,
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他把愛心撒向別人，
17:03
and all that kindness
has come back to him.
has come back to him.
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所有的愛心現在又回到了他身邊。
17:06
He walks the face of the Earth
right now and knows why he's here.
right now and knows why he's here.
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他活在這個世界上，
他知道人生的要義。
他知道人生的要義。
17:13
What a gift.
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多麼了不起。
17:16
The second thing that my son has given me
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我兒子給我的第二個禮物是，
17:18
is he's given me my mission in life.
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他給我了人生的意義。
17:21
Now I know why I'm here.
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現在我知道我為什麼會在這裡。
17:23
I'm going to save my son,
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我要努力救活我兒子，
17:26
and if it doesn't happen in time for him,
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如果時間不夠，我們沒辦法救活他，
17:29
I'm going to work so that no other mother
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我也會努力，這樣其他的母親
17:32
has to go through what I'm going through.
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就不用再經歷我所經歷的苦難。
17:35
And the third thing,
and last but not least
and last but not least
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最後卻同等重要的第三件
17:38
gift that my son has given me,
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我兒子給我的禮物，
17:41
as an exclamation point
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也是 2014 年 8 月
17:43
to the miraculous month
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這個不同尋常的月份的圓滿句點：
17:45
of August 2014:
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17:49
That girlfriend that he went to get on
the night of diagnosis is now his wife,
the night of diagnosis is now his wife,
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診斷結果出來當晚他去接的女朋友，
現在成了他的妻子，
現在成了他的妻子，
17:55
and Pete and Julie have given me my
granddaughter, Lucy Fitzgerald Frates.
granddaughter, Lucy Fitzgerald Frates.
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皮特和朱莉生下了我們的孫女，
露西·費茲潔拉·弗拉特斯。
露西·費茲潔拉·弗拉特斯。
18:03
Lucy Fitzgerald Frates came two weeks early
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露西·費茲潔拉·弗拉特斯
在 2014 年 8 月 31 日
在 2014 年 8 月 31 日
18:08
as the exclamation point
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之前兩週降生，
18:10
on August 31st, 2014.
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為這個月份劃下句點。
18:15
And so —
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所以
18:16
(Applause) —
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（掌聲）
18:25
And so let me leave you with
Pete's words of inspiration
Pete's words of inspiration
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所以現在讓我把皮特激勵同學、
18:29
that he would use to classmates,
coworkers and teammates.
coworkers and teammates.
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同事和隊友的話留給你們，
18:36
Be passionate.
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一定要熱情。
18:40
Be genuine.
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一定要真誠。
18:42
Be hardworking.
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一定要努力。
18:45
And don't forget to be great.
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還有不要忘了，一定要優秀。
18:49
Thank you. (Applause)
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謝謝你們。（掌聲）
ABOUT THE SPEAKER
Nancy Frates - Mother + ALS AdvocateNancy Frates and her family have raised a projected $160 million for ALS research in 2014. How? They kicked off the ALS Ice Bucket Challenge to honor 29-year-old Pete Frates.
Why you should listen
When Nancy Frates’ son was diagnosed with ALS in 2012, she was confused. Pete was a 27-year-old athlete and the only people she’d ever known with this disease were elderly already. Ever since that life-changing moment, she and her family have found their sense of purpose in working tirelessly to raise awareness about ALS and to stimulate funding for research. Because it’s been 75 years since Lou Gehrig delivered his famed farewell speech, and no treatment or cure has been found. This, says Nancy Frates, is unacceptable.
This July, Pete Frates inspired the ALS Ice Bucket Challenge, which quickly became a viral fundraising phenomenon. The challenge inspired people across the United States and world to dump a bucket of ice on their head and pass the challenge on to three friends. In all, The ALS Association projects that the challenge will have raised $160 million for research by the end of 2014.
Pete Frates is now paralyzed and mute—he speaks to the world through eye gazer technology and through his family. They all remain hopeful for progress in treating this terrible disease.
Nancy Frates | Speaker | TED.com