ABOUT THE SPEAKER
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.

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.

More profile about the speaker
Nancy Frates | Speaker | TED.com
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:
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。
- 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

Double-click the English transcript below to play the video.

00:12
Well, good afternoon下午.
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各位,下午好。
00:14
How many許多 of you
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你們中有多少人
00:16
took the ALSALS Ice Bucket Challenge挑戰?
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參加了ALS(肌萎縮側索硬化症)
漸凍人冰桶挑戰?
00:19
(Applause掌聲)
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(掌聲)
00:20
Woo求愛 hoo!
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哇噢!
00:22
Well, I have to tell you, from
the bottom底部 of our hearts心中,
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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日期 the ALSALS Association協會
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你們知道嗎,
到現在漸凍人協會已經募集到了
00:31
has raised上調 125 million百萬 dollars美元?
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一億兩千五百萬美元?
00:36
Woo求愛 hoo! (Applause掌聲)
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哇噢 !(掌聲)
00:43
It takes me back to the summer夏季 of 2011.
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那是在 2011 年夏,
00:46
My family家庭, my kids孩子 had all grown長大的 up.
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我們全家,孩子們全都長大成人了。
00:48
We were officially正式 empty nesters巢老人,
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我們夫婦成了標準的空巢老人,
00:50
and we decided決定, let's
go on a family家庭 vacation假期.
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我們決定,全家來一次親子遊。
00:53
Jenn, my daughter女兒, and my son-in-law女婿
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珍,我女兒和女婿
00:55
came來了 down from New York紐約.
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從紐約過來。
00:56
My youngest最年輕的, Andrew安德魯,
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我的小兒子安德魯
00:58
he came來了 down from his home in Charlestown查爾斯頓
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從他查爾斯頓的家來了。
01:00
where he was working加工 in Boston波士頓,
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他當時在波士頓工作,
01:02
and my son兒子 Pete皮特,
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還有我的另外一個兒子皮特
01:03
who had played發揮 at
Boston波士頓 College學院, baseball棒球,
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在波士頓學院時是棒球選手,
01:06
had played發揮 baseball棒球
professionally專業 in Europe歐洲,
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後來在歐洲打職棒,
01:09
and had now come home and was selling銷售
group insurance保險, he also joined加盟 us.
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現在回來了,
當時他在賣團體保險,他也來了。
01:14
And one night, I found發現 myself
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有天晚上,我和皮特
01:15
having a beer啤酒 with Pete皮特,
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在喝啤酒聊天,
01:17
and Pete皮特 was looking at
me and he just said,
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皮特看著我,然後對我說:
01:20
"You know, Mom媽媽, I don't know,
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「老媽,我有點糾結,
01:22
selling銷售 group insurance保險
is just not my passion."
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我對賣團體保險
根本沒有任何激情。」
01:26
He said, "I just don't feel
I'm living活的 up to my potential潛在.
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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任務 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媽媽,
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他接著說:「還有,老媽,
01:38
I have to leave離開 early from vacation假期
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我得提前結束假期,
01:41
because my inter-city城際 league聯盟 team球隊
that I play for made製作 the playoffs季后賽,
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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波士頓
because I can't let my team球隊 down.
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我要回到波士頓,
我不能讓隊友失望。
01:50
I'm just not as passionate多情 about my job工作
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我對工作的熱忱完全
01:53
as I am about baseball棒球."
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比不上棒球。」
01:56
So off Pete皮特 went, and
left the family家庭 vacation假期
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就這樣,皮特提前走了,
離開了全家人一起的旅行,
01:59
break打破 a mother's母親 heart
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讓老媽很是受傷,
02:00
and he went, and we
followed其次 four days later後來
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他走後四天,
我們也結束假期回來了,
02:05
to see the next下一個 playoff挑撥 game遊戲.
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去看下一次季後賽。
02:07
We're at the playoff挑撥 game遊戲,
Pete's皮特的 at the plate盤子,
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我們在季後賽現場觀看,
皮特在本壘,
02:10
and a fastball's快球的 coming未來 in,
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來了一個快球,
02:12
and it hits點擊 him on the wrist.
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擊中了他的手腕。
02:15
Oh, Pete皮特.
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天啊,皮特!
02:17
His wrist went completely全然 limp跛行, like this.
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他的手腕完全軟了,就像這樣。
02:20
So for the next下一個 six months個月,
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接下來的六個月,
02:21
Pete皮特 went back to his home in SouthieSouthie,
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皮特回到了他在南波士頓的家,
02:24
kept不停 working加工 that unpassionateunpassionate job工作,
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繼續他沒有熱忱的工作,
02:27
and was going to doctors醫生
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看醫生,
02:28
to see what was wrong錯誤 with this wrist
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看看手腕到底是怎麼了,
02:30
that never came來了 back.
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為什麼總也不好。
02:32
Six months個月 later後來, in March遊行,
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六個月後,三月份,
02:34
he called my husband丈夫
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媽媽 and Dad, we have a doctor醫生
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「老媽老爸,現在有個
02:38
that found發現 a diagnosis診斷 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醫生 appointment約定 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早上, Pete皮特, John約翰 and I
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那天早上,皮特、約翰和我
02:49
all got up, got dressed連衣裙的, got in our cars汽車
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全都起來了,穿好衣服,上了車——
02:52
three separate分離 cars汽車
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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,
02:55
after the doctor's醫生 appointment約定 to
find out what happened發生 to the wrist.
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我們各自還要去上班。
02:58
We walked into the
neurologist's神經學家的 office辦公室, satSAT down,
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我們走進神經專家的辦公室,
坐了下來,
03:01
four doctors醫生 walk步行 in,
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進來了四個醫生,
03:02
and the head neurologist神經學家 sits坐鎮 down.
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首席醫生坐了下來。
03:05
And he says, "Well, Pete皮特, we've我們已經
been looking at all the tests測試,
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他說道:「皮特,
我們看了所有的檢查結果,
03:08
and I have to tell you,
it's not a sprained扭傷 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破碎 wrist,
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也不是腕關節骨折,
03:13
it's not nerve神經 damage損傷 in the wrist,
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不是腕關節神經損傷,
03:15
it's not an infection感染,
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不是發炎,
03:17
it's not Lyme萊姆 disease疾病."
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也不是萊姆病。」
03:21
And there was this deliberate商榷
elimination消除 going up,
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就這樣逐個逐個地排除,
03:25
and I was thinking思維 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膝蓋,
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然後他把自己的雙手放到膝蓋上,
03:32
he looked看著 right at my
27-year-old-歲 kid孩子, and said,
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雙眼直直地看著我
27 歲的兒子,然後說:
03:35
"I don't know how to
tell a 27-year-old-歲 this:
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「我不知道該怎麼
告訴一個 27 歲年輕人,
03:38
Pete皮特, you have ALSALS."
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皮特,這是肌萎縮側索硬化症。」
03:42
ALSALS?
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肌萎縮側索硬化症?(漸凍人症)
03:44
I had had a friend朋友 whose誰的
80-year-old-歲 father父親 had ALSALS.
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我有個朋友的父親,
80 歲了,就是這病。
03:49
I looked看著 at my husband丈夫, he looked看著 at me,
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我和我先生對視了一下,
03:51
and then we looked看著 at the
doctor醫生, and we said, "ALSALS?
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我們一齊看著醫生,
問道:「漸凍人症?
03:53
Okay, what treatment治療? 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看著 at us, and he
said, "Mr先生. and Mrs太太. FratesFrates,
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然後他看著我們,說道:
「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治療
and there's no cure治愈."
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這種病沒法治,治不了。」
04:08
We were the worst最差 culprits罪魁禍首.
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我們簡直蠢到家了。
04:11
We didn't even understand理解
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我們甚至根本不知道
04:14
that it had been 75 years年份 since以來 Lou Gehrig格里克
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自從知名棒球手
盧·賈里格罹患這種病後,
04:16
and nothing had been doneDONE
in the progress進展 against反對 ALSALS.
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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。
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安德魯 came來了 home from Charlestown查爾斯頓,
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安德魯從查爾斯頓回來了,
04:29
and Pete皮特 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當時的女友 Julie朱麗葉
and brought her home,
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接他當時還是女朋友的朱莉,
帶她回來,
04:35
and six hours小時 later後來 after diagnosis診斷,
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診斷結果出來 6 個小時後,
04:37
we're sitting坐在 around
having a family家庭 dinner晚餐,
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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記得
cooking烹飪 dinner晚餐 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領導, Pete皮特, set the vision視力,
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然後,我們的領袖皮特,
設定了目標,
04:51
and talked to us just like
we were his new team球隊.
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他說話時的語氣就像
我們是他的新隊友。
04:54
He said, "There will be
no wallowing打滾, 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前鋒.
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我們要往前看。
05:02
What an amazing驚人 opportunity機會
we have to change更改 the world世界.
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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更改 the face面對
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我要改變漸凍人症這種目前
05:10
of this unacceptable不可接受 situation情況 of ALSALS.
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讓人無法接受的現狀。
05:14
We're going to move移動 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面前
of philanthropists慈善家 like Bill法案 Gates蓋茨."
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我要讓比爾·蓋茨這樣的
慈善家了解到這種疾病。」
05:20
And that was it. We
were given特定 our directive指示.
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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個月 that followed其次,
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在接下來的日子裡,
05:26
within a week, we had
our brothers兄弟 and sisters姐妹
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一周之內,我們把兄弟姐妹
05:29
and our family家庭 come to us,
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親朋好友召集到了家裡來,
05:31
that they were already已經
creating創建 Team球隊 FrateFrate的 Train培養.
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他們已經著手打造「弗拉特斯應援團」
(Team Frate Train) 專頁。
05:34
Uncle叔叔 Dave戴夫, he was the webmaster網站管理員;
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大維叔叔是我們的網路管理員,
05:36
Uncle叔叔 Artie阿蒂, he was the accountant會計;
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亞提叔叔是會計,
05:39
Auntie阿姨 Dana達納, she was the graphic圖像 artist藝術家;
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戴娜姑媽是平面設計,
05:42
and my youngest最年輕的 son兒子, Andrew安德魯,
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我的小兒子安德魯
05:44
quit放棄 his job工作, left his
apartment公寓 in Charlestown查爾斯頓
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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關心
of Pete皮特 and be his caregiver護理人員."
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他說:
「我來照顧皮特,做他的護士。」
05:51
Then all those people,
classmates同學, teammates隊友,
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然後所有這些人,同學、隊友,
05:54
coworkers合作夥伴 that Pete皮特 had inspired啟發
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皮特長期以來
05:57
throughout始終 his whole整個 life,
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提攜共事的同事,
05:59
the circles of Pete皮特 all started開始
intersecting相交 with one another另一個,
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皮特的人脈,開始彼此溝通聯絡,
06:03
and made製作 Team球隊 FrateFrate的 Train培養.
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最後就有了臉書上的
「弗拉特斯應援團」專頁。
06:07
Six months個月 after diagnosis診斷,
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診斷結果出來六個月後,
06:10
Pete皮特 was given特定 an award at a
research研究 summit首腦 for advocacy擁護.
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皮特在一次研究高峰會上
因倡導此病獲獎。
06:15
He got up and gave a very eloquent雄辯 speech言語,
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他站了出來,
發表了一場動人的演講,
06:17
and at the end結束 of the
speech言語, there was a panel面板,
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演講結束後是討論會,
06:20
and on the panel面板 were these
pharmaceutical製藥 executives高管
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討論會成員是製藥企業的高管、
06:23
and biochemists生物化學家 and clinicians臨床醫生
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生物化學家和臨床醫生。
06:25
and I'm sitting坐在 there and
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內容
went straight直行 over my head.
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講的東西我全然不懂。
06:31
I avoided避免 every一切 science科學
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。
06:33
But I was watching觀看 these people,
and I was listening to them,
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但是,我就看著這些人,
聽他們在講,
06:36
and they were saying,
"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真實
unfamiliarity不熟悉 between之間 them.
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他們彼此之間沒有任何默契。
06:43
So at the end結束 of their talk, the panel面板,
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在討論會結束後,
06:46
they had questions問題 and answers答案,
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是問答環節,
06:48
and boom繁榮, 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麥克風,
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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加工 in ALSALS.
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非常感謝你們在漸凍人方面的工作,
06:56
It means手段 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觀看 your body身體 language語言
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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似乎 like there's a whole整個
lot of collaboration合作 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。
07:09
And not only that, where's哪裡 the flip翻動 chart圖表
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還不止此,怎麼沒有解釋性掛圖
07:12
with the action行動 items項目 and the
follow-up跟進 and the accountability問責?
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寫明要做的事情,後續步驟,
以及各方負責的事項?
07:17
What are you going to do
after you leave離開 this room房間?"
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會議結束後,你們會做些什麼?」
07:21
And then I turned轉身 around
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然後我轉過身來,
07:23
and there was about 200 pairs
of eyes眼睛 just staring凝視 at me.
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差不多有 200 雙眼睛
正在注視著我。
07:30
And it was that point that I realized實現
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就在那時,我意識到,
07:34
that I had talked about
the elephant in the room房間.
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我講的這些才是要點,
才是最該做的事。
07:38
Thus從而 my mission任務 had begun開始.
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就這樣我的使命開始了。
07:41
So over the next下一個 couple一對 of years年份,
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接下來的幾年,
07:44
Pete皮特we've我們已經 had our highs高位 and our lows低點.
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皮特—我們磕磕絆絆起起落落。
07:47
Pete皮特 was put on a compassionate富於同情心的 use drug藥物.
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皮特接受特許藥物的治療。
07:49
It was hope希望 in a bottle瓶子 for
the whole整個 ALSALS community社區.
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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 IIIIII trial審訊.
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這種藥物還在臨床試驗的第三階段。
07:55
Then six months個月 later後來, the
data數據 comes back: no efficacy功效.
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六個月後,數據回來了:
沒有任何療效。
07:59
We were supposed應該 to
have therapies治療 overseas海外,
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我們還以為會有效果,
繼續去境外接著治療,
08:02
and the rug地毯 was
pulled out from under us.
164
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但是最後的救命稻草也沒有了。
08:04
So for the next下一個 two years年份,
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接下來的兩年,
08:06
we just watched看著 my son兒子
be taken採取 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一切 day.
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一點點被病魔拖垮。
08:14
Two and a half years年份 ago,
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兩年半前,
08:16
Pete皮特 was hitting home
runs運行 at baseball棒球 fields領域.
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皮特還在棒球場上打全壘打。
08:20
Today今天, Pete's皮特的 completely全然 paralyzed.
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今天,皮特已經徹底癱瘓了。
08:23
He can't hold保持 his head up any longer.
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甚至連頭也抬不起來了。
08:26
He's confined受限 to a motorized機動的 wheelchair輪椅.
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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饋送 tube.
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進食需要進食管。
08:33
He can't speak說話.
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他也不能說話了。
08:37
He talks會談 with eye gaze凝視 technology技術
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他需要通過目控技術
08:40
and a speech言語 generating發電 device設備,
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和一個語音生成設備來說話,
08:42
and we're watching觀看 his lungs,
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我們在觀察他的肺,
08:44
because his diaphragm光圈
eventually終於 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決定 will be made製作
to put him on a ventilator換氣扇 or not.
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到時候我們就得決定
是否給他裝上呼吸器。
08:51
ALSALS robs搶劫 the human人的 of all their physical物理
parts部分, but the brain stays入住 intact完整.
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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。
09:01
So July七月 4th, 2014,
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2014 年 7 月 4 日,
09:06
75th year of Lou Gehrig'sGehrig氏
inspirational勵志 speech言語 comes,
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4408
盧·賈里格發表振奮人心的
演講 75 年後,
09:10
and Pete皮特 is asked by MLBMLB.comCOM to write
an article文章 in the Bleacher漂白劑 Report報告.
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美國職棒大聯盟邀請皮特
在《看台報告》上撰文。
09:16
And it was very significant重大, because he
wrote it using運用 his eye gaze凝視 technology技術.
185
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非比尋常,因為文章是皮特
通過目控技術寫出來的。
09:23
Twenty二十 days later後來,
the ice started開始 to fall秋季.
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20 天後,冰塊開始從冰桶裡面滑落。
09:29
On July七月 27th, Pete's皮特的
roommate室友 in New York紐約 City,
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7 月 27 日,皮特在紐約的室友
09:34
wearing穿著 a Quinn奎因 For The Win贏得 shirt襯衫,
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穿上了「奎恩必勝」的 T 恤,
09:36
signifying表意 Pat Quinn奎因, another另一個
ALSALS patient患者 known已知 in New York紐約,
189
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奎因是另一位知名的
紐約漸凍人症病人,
09:40
and B.C. shorts短褲
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2051
和印有「波士頓學院」的短褲,
09:42
said, "I'm taking服用 the ALSALS
Ice Bucket Challenge挑戰,"
191
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說道:
「我接受漸凍人症冰桶挑戰,」
09:47
picked採摘的 up the ice, put it over his head.
192
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舉起冰桶,從頭倒下。
09:49
"And I'm nominating提名 ..."
And he sent發送 it up to Boston波士頓.
193
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4208
「我提名...」
他提名了波士頓的人繼續接力。
09:54
And that was on July七月 27th.
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3424
那是 7 月 27 日。
09:57
Over the next下一個 couple一對
of days, our news新聞 feed飼料
195
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2571
接下來的幾天,我們的動態消息
10:00
was full充分 of family家庭 and friends朋友.
196
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2535
全是親朋好友發來的。
10:02
If you haven't沒有 gone走了 back,
the nice不錯 thing about FacebookFacebook的
197
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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,
10:05
is that you have the dates日期, you can go back.
198
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你可以選擇日期,
查看當日的內容。
10:07
You've got to see Uncle叔叔 Artie's阿蒂的
human人的 Bloody血腥 Mary瑪麗.
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一定要看看亞提叔叔的
「血腥瑪麗」冰桶挑戰短片。
10:11
I'm telling告訴 you, it's one of the best最好 ones那些,
200
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我告訴你們,非常之棒,
10:14
and that was probably大概 in day two.
201
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時間應該就是第二天。
10:17
By about day four, Uncle叔叔
Dave戴夫, the webmaster網站管理員,
202
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第四天左右,
我們的網絡管理員大維叔叔,
10:21
he isn't on FacebookFacebook的,
203
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他還沒有臉書帳號,
10:23
and I get a text文本 from him,
and it says, "Nancy南希,
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我收到了他發來的短信,
問道:「南西,
10:26
what the hell地獄 is going on?"
205
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到底是怎麼回事?」
10:29
Uncle叔叔 Dave戴夫 gets得到 a hit擊中
every一切 time Pete's皮特的 website網站
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每次有人看皮特的網站,戴維叔叔
10:32
is gone走了 onto, and his
phone電話 was blowing up.
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就會收到信息,他的手機響個不停。
10:36
So we all satSAT down and we realized實現,
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我們全都坐了下來,我們意識到
10:37
money is coming未來 in — how amazing驚人.
209
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3852
捐款來了—真是太棒了。
10:41
So we knew知道 awareness意識
would lead to funding資金,
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2544
我們知道更多人知道情況後
會給我們捐款,
10:44
we just didn't know it would
only take a couple一對 of days.
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我們只是沒有想到會這麼快,
幾天的時間就開始了。
10:47
So we got together一起, put our best最好
501(c)(3)s on Pete's皮特的 website網站,
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我們把皮特的網站
申請了非營利組織,
10:52
and off we went.
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然後勇往直前。
10:54
So week one, Boston波士頓 media媒體.
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第一周,波士頓媒體開始報導。
10:57
Week two, national國民 media媒體.
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第二周,全國媒體開始報導。
11:00
It was during week two
that our neighbor鄰居 next下一個 door
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第二周的時候,我們的隔壁鄰居
11:02
opened打開 up our door and threw a pizza比薩
217
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2392
叩開我們的門,
11:05
across橫過 the kitchen廚房 floor地板, saying,
218
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從廚房的門縫裡扔進了一個披薩,
11:07
"I think you people might威力
need food餐飲 in there."
219
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2939
說:「我覺得你們應該需要吃的。」
11:10
(Laughter笑聲)
220
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2205
(笑聲)
11:12
Week three, celebrities名人
Entertainment娛樂 Tonight今晚,
221
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第三周,各界名流如《今晚娛樂》、
11:16
Access訪問 Hollywood好萊塢.
222
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《走進好萊塢》開始報導。
11:18
Week four, global全球BBCBBC, Irish愛爾蘭的 Radio無線電.
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第四周,全球媒體——
英國廣播公司、愛爾蘭電台。
11:24
Did anyone任何人 see "Lost丟失 In Translation翻譯"?
224
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你們有人看過《迷失東京》嗎?
11:27
My husband丈夫 did Japanese日本 television電視.
225
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2189
我先生接受了日本電視台的採訪。
11:29
It was interesting有趣.
226
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非常棒。
11:31
(Laughter笑聲)
227
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2052
(笑聲)
11:33
And those videos視頻, the popular流行 ones那些.
228
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5762
還有那些短片,
點擊率比較高的一些。
11:39
Paul保羅 Bissonnette'sBissonnette的
glacier冰川 video視頻, incredible難以置信.
229
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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。
11:43
How about the redemption贖回 nuns修女 of Dublin都柏林?
230
691864
2737
還有都柏林的修女們的冰桶挑戰,
怎麼樣?
11:46
Who's誰是 seen看到 that one?
231
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1705
有人看到那個了嗎?
11:48
It's absolutely絕對 fantastic奇妙.
232
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2587
絕對超讚。
11:50
J.T., Justin賈斯汀 Timberlake汀布萊克.
233
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2217
J.T,賈斯汀·提姆布萊克。
11:53
That's when we knew知道, that
was a real真實 A-list一個列表 celebrity名人.
234
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3769
這個時候,我們知道,
A 咖的大明星們上場了。
11:56
I go back on my texts文本, and I can see
235
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我翻看我的短信,看到我妹妹發來
11:59
"JTJT! JTJT!" My sister妹妹 texting發短信 me.
236
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5132
信息告訴我「賈斯汀!賈斯汀!」
12:04
Angela安吉拉 Merkel默克爾, the chancellor校長 of Germany德國.
237
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德國總理安吉拉·默克爾。
12:08
Incredible難以置信.
238
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1806
不可思議。
12:09
And the ALSALS patients耐心,
239
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2310
漸凍人症患者,還有他們的家人,
12:12
you know what their favorite喜愛
ones那些 are, and their families'家庭'?
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你們知道他們最喜歡的是哪個嗎?
12:15
All of them.
241
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每個都喜歡,全都喜歡。
12:17
Because this misunderstood誤解 and
underfunded資金不足 "rare罕見" disease疾病,
242
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因為這一被人誤解,
缺乏科研經費的「罕見」疾病,
12:21
they just satSAT and watched看著 people
saying it over and over: "ALSALS, ALSALS."
243
729898
6480
現在人們可以坐下來,
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。
12:28
It was unbelievable難以置信的.
244
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3209
12:31
And those naysayers反對者,
245
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2043
那些對此嗤之以鼻的人,
12:33
let's just talk a couple一對
of stats統計, shall we?
246
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2839
我們來看幾個統計數字,好嗎?
12:36
Okay, so the ALSALS Association協會,
247
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2638
先說漸凍人症協會,
12:39
they think by year end結束,
it'll它會 be 160 million百萬 dollars美元.
248
747107
3957
他們相信到年底,
可以募集到一億六千萬美元。
12:43
ALSALS TDITDI in Cambridge劍橋,
249
751064
2585
位在波士頓劍橋的
漸凍人症治療開發研究所,
12:45
they raised上調 three million百萬 dollars美元.
250
753649
2052
募集到了 300 萬美元。
12:47
Well, guess猜測 what?
251
755701
1442
出人意料吧?
12:49
They had a clinical臨床 trial審訊 for a drug藥物
that they've他們已經 been developing發展.
252
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他們已經對一直在研發的
一種藥物進行了臨床試驗。
12:52
It was on a three-year三年 track跟踪 for funding資金.
253
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三年的經費可以無虞了。
12:55
Two months個月.
254
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1487
兩個月。
12:57
It's coming未來 out starting開始 in two months個月.
255
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從開始到現在僅僅兩個月。
12:59
(Applause掌聲)
256
767328
3940
(掌聲)
13:05
And YouTubeYouTube的 has reported報導
257
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5015
根據 YouTube 的報導,
13:10
that over 150 countries國家 have posted發布
Ice Bucket Challenges挑戰 for ALSALS.
258
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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。
13:17
And FacebookFacebook的, 2.5 million百萬 videos視頻,
259
785884
6571
臉書上有 250 萬個短片,
13:24
and I had the awesome真棒 adventure冒險
260
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3115
上周,我參觀了臉書園區,
13:27
visiting訪問 the FacebookFacebook的 campus校園 last week,
261
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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.
262
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2767
我告訴那裡的員工,
「我知道我家裡的情況,
13:33
I can't imagine想像 what it
was like around here."
263
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2620
但是這裡情況真是無法想像。」
13:35
All she said was, "Jaw-dropping令人驚嘆."
264
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員工們異口同聲地說道,
「嚇死你。」
13:40
And my family's家庭的 favorite喜愛 video視頻?
265
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要問我們全家最喜歡的短片是哪個?
13:45
Bill法案 Gates蓋茨.
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非比爾·蓋茨的莫屬。
13:48
Because the night Pete皮特 was diagnosed確診,
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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 ALSALS in
front面前 of philanthropists慈善家 like Bill法案 Gates蓋茨,
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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,
13:59
and he did it.
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現在他做到了。
14:00
Goal目標 number one, check.
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第一個目標,達到。
14:03
Now on to the treatment治療 and cure治愈.
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接下來的目標就是治療和治癒了。
14:05
(Applause掌聲)
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(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澆注 buckets水桶 of
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離開 you
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現在我希望告訴你們一些東西,
14:24
with a couple一對 of things that
I'd like you to remember記得.
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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一切 morning早上 when you wake喚醒 up,
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每天早上醒來,
14:31
you can choose選擇 to live生活 your day in positivity陽性.
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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位置
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蒙頭大睡,什麼也不管了,
14:40
and pulled the covers蓋子
over my head every一切 day?
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你們會責怪我嗎?
14:44
No, I don't think anybody任何人 would blame me,
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不會,我想你們不會,
14:46
but Pete皮特 has inspired啟發 us to wake喚醒 up
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但是皮特激勵我們每天早上醒來
14:49
every一切 morning早上 and be
positive and proactive主動.
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積極向上,全力以赴。
14:52
I actually其實 had to ditch support支持 groups
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我實際上還要推掉一些支援團體,
14:55
because everybody每個人 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草坪 with chemicals化學製品,
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他們在自家的草坪上灑藥,
14:59
that's why they got ALSALS,
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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消極.
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我要遠離這類負能量。
15:07
The second第二 thing I want to leave離開 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中間 of the challenge挑戰
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處在困境挑戰中的人
15:13
has to be willing願意 to have
the mental心理 toughness韌性
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一定要有堅強的意志力,
15:16
to put themselves他們自己 out there.
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去克服困難,戰勝挑戰。
15:19
Pete皮特 still goes to baseball棒球 games遊戲
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皮特還是會去棒球比賽現場,
15:22
and he still sits坐鎮 with his
teammates隊友 in the dugout獨木舟,
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還是會和他的隊友一起坐在休息區,
15:25
and he hangs掛起 his gravity重力 feed飼料 bag
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他會把進食袋好好地
15:28
right on the cages籠子.
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掛在架子上。
15:29
You'll你會 see the kids孩子, they're
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皮特, 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.
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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現實 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第三 thing I
want to leave離開 you with:
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我要告訴你們的第三件事:
15:45
If you ever come across橫過 a situation情況
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如果你們有一天遇到
15:48
that you see as so unacceptable不可接受,
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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,
15:55
and find your best最好 mother母親 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掌聲)
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(掌聲)
16:34
Thank you.
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謝謝。
16:36
(Applause掌聲)
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(掌聲)
16:40
I know that I'm running賽跑 over,
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我知道我可能有點超時了,
16:42
but I've got to leave離開 you with this:
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但是我要告訴你們這個:
16:44
the gifts禮品 that my son兒子 has given特定 me.
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我兒子給我的精神財富。
16:47
I have had 29 years年份
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29 年來,我很有幸
16:50
of having the honor榮譽 of being存在 the mother母親
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能做皮特·弗拉特斯的母親。
16:53
of Pete皮特 FratesFrates.
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16:55
Pete皮特 FratesFrates has been inspiring鼓舞人心
and leading領導 his whole整個 life.
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皮特·弗拉特斯一直
積極向上,鼓舞他人。
17:00
He's thrown拋出 out kindness善良,
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他把愛心撒向別人,
17:03
and all that kindness善良
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散步 the face面對 of the Earth地球
right now and knows知道 why he's here.
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他活在這個世界上,
他知道人生的要義。
17:13
What a gift禮品.
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多麼了不起。
17:16
The second第二 thing that my son兒子 has given特定 me
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我兒子給我的第二個禮物是,
17:18
is he's given特定 me my mission任務 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保存 my son兒子,
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我要努力救活我兒子,
17:26
and if it doesn't happen發生 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母親
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我也會努力,這樣其他的母親
17:32
has to go through通過 what I'm going through通過.
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就不用再經歷我所經歷的苦難。
17:35
And the third第三 thing,
and last but not least最小
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最後卻同等重要的第三件
17:38
gift禮品 that my son兒子 has given特定 me,
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我兒子給我的禮物,
17:41
as an exclamation感嘆 point
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也是 2014 年 8 月
17:43
to the miraculous神奇 month
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這個不同尋常的月份的圓滿句點:
17:45
of August八月 2014:
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17:49
That girlfriend女朋友 that he went to get on
the night of diagnosis診斷 is now his wife妻子,
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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,
17:55
and Pete皮特 and Julie朱麗葉 have given特定 me my
granddaughter孫女, Lucy露西 Fitzgerald菲茨杰拉德 FratesFrates.
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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。
18:03
Lucy露西 Fitzgerald菲茨杰拉德 FratesFrates came來了 two weeks early
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露西·費茲潔拉·弗拉特斯
在 2014 年 8 月 31 日
18:08
as the exclamation感嘆 point
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之前兩週降生,
18:10
on August八月 31stST, 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掌聲) —
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8884
(掌聲)
18:25
And so let me leave離開 you with
Pete's皮特的 words of inspiration靈感
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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同學,
coworkers合作夥伴 and teammates隊友.
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同事和隊友的話留給你們,
18:36
Be passionate多情.
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一定要熱情。
18:40
Be genuine真正.
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一定要真誠。
18:42
Be hardworking用功.
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一定要努力。
18:45
And don't forget忘記 to be great.
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還有不要忘了,一定要優秀。
18:49
Thank you. (Applause掌聲)
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謝謝你們。(掌聲)
Translated by FBC Global
Reviewed by Regina Chu

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ABOUT THE SPEAKER
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.

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.

More profile about the speaker
Nancy Frates | Speaker | TED.com