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

南希·弗莱特: 开启冰桶挑战的母亲

Filmed:
1,072,268 views

27岁的皮特·弗莱特在棒球比赛中伤到了手腕,却得到了意料之外的诊断:这不是骨折,而是渐冻人症。渐冻人症,更为人知的名字是”卢·格里格病症”,会导致瘫痪和死亡——没有治愈方法。但皮特看到了让这种病症广为人知的机会。他的母亲南希·弗莱特在演讲中讲述了她的家庭怎样开启了冰桶挑战,并怎样荣幸地看到包括贾斯汀·汀布莱克、比尔盖茨等的所有人参与挑战。如果你也曾接受过冰桶挑战,接下来请这样做:就像你传播自己的冰桶挑战视频那样,将这个演讲推广于众。
- 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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大家下午好
00:14
How many许多 of you
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你们中有多少人
00:16
took the ALSALS Ice Bucket Challenge挑战?
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参加了冰桶挑战?
(掌声)
00:19
(Applause掌声)
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哦耶!
00:20
Woo求爱 hoo!
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我在此对你们表达衷心的谢意,
00:22
Well, I have to tell you, from
the bottom底部 of our hearts心中,
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00:26
thank you so very, very much.
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非常感谢你们!谢谢!
00:28
Do you know to date日期 the ALSALS Association协会
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你们知道目前为止渐冻人(ALS)协会
00:31
has raised上调 125 million百万 dollars美元?
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已筹集到1.25亿美元了吗?
00:36
Woo求爱 hoo! (Applause掌声)
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哦耶!(掌声)
00:43
It takes me back to the summer夏季 of 2011.
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这让我又想起2011年夏天
00:46
My family家庭, my kids孩子 had all grown长大的 up.
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我的孩子们都已经长大成人
00:48
We were officially正式 empty nesters巢老人,
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而我们也正式成了空巢老人
00:50
and we decided决定, let's
go on a family家庭 vacation假期.
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于是我们决定操办一场家庭聚会
00:53
Jenn, my daughter女儿, and my son-in-law女婿
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我的女儿 Jenn 以及我的女婿
00:55
came来了 down from New York纽约.
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从纽约回来
00:56
My youngest最年轻的, Andrew安德鲁,
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我最小的孩子 Andrew
00:58
he came来了 down from his home in Charlestown查尔斯顿
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从查尔斯顿的家中过来
01:00
where he was working加工 in Boston波士顿,
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他在波士顿工作
01:02
and my son儿子 Pete皮特,
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还有我的儿子 Pete
01:03
who had played发挥 at
Boston波士顿 College学院, baseball棒球,
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他曾是波士顿学院棒球手
01:06
had played发挥 baseball棒球
professionally专业 in Europe欧洲,
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参加过欧洲的职业棒球赛
01:09
and had now come home and was selling销售
group insurance保险, he also joined加盟 us.
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当时从事卖团体保险的工作,
也加入了我们
01:14
And one night, I found发现 myself
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有一天晚上
01:15
having a beer啤酒 with Pete皮特,
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我和Pete喝了一杯
01:17
and Pete皮特 was looking at
me and he just said,
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Pete 看着我说:
01:20
"You know, Mom妈妈, I don't know,
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“妈妈,我觉得吧
01:22
selling销售 group insurance保险
is just not my passion."
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卖团体保险不是我的热情所在。“
01:26
He said, "I just don't feel
I'm living活的 up to my potential潜在.
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他说,“我觉得这项工作辜负了我的潜力,
01:32
I don't feel this is my mission任务 in life."
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我觉得这不是我的人生使命。“
01:35
And he said, "You know,
oh by the way, Mom妈妈,
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他还说:“噢,对了, 妈妈
01:38
I have to leave离开 early from vacation假期
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我得提前离开
01:41
because my inter-city城际 league联盟 team球队
that I play for made制作 the playoffs季后赛,
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因为我效力的队伍打进了季后赛
01:45
and I have to get back to Boston波士顿
because I can't let my team球队 down.
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我得回波士顿去,
因为我不能让我的队友失望
01:50
I'm just not as passionate多情 about my job工作
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我只是对我的工作
01:53
as I am about baseball棒球."
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没有像对待棒球那样的热情。“
01:56
So off Pete皮特 went, and
left the family家庭 vacation假期
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因此Pete提前离开了
01:59
break打破 a mother's母亲 heart
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碎了当妈的心
02:00
and he went, and we
followed其次 four days later后来
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然后他去了波士顿,
四天以后我们也跟去了
02:05
to see the next下一个 playoff挑拨 game游戏.
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去看即将到来的季后赛
02:07
We're at the playoff挑拨 game游戏,
Pete's皮特的 at the plate盘子,
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我们在季后赛现场,Pete 在垒上
02:10
and a fastball's快球的 coming未来 in,
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一个快球过来
02:12
and it hits点击 him on the wrist.
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打在了他的手腕上
02:15
Oh, Pete皮特.
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噢,Pete
02:17
His wrist went completely全然 limp跛行, like this.
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他的手腕完全瘫软了,就像这样
02:20
So for the next下一个 six months个月,
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所以接下来的六个月里
02:21
Pete皮特 went back to his home in SouthieSouthie,
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Pete回了他在波士顿南部的家
02:24
kept不停 working加工 that unpassionateunpassionate job工作,
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继续做那份没有热情的工作
02:27
and was going to doctors医生
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并去看医生
02:28
to see what was wrong错误 with this wrist
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检查他的手腕出了什么问题
02:30
that never came来了 back.
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怎么复原不了
02:32
Six months个月 later后来, in March游行,
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六个月以后,三月里
02:34
he called my husband丈夫
and me, and he said,
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他打电话给我丈夫和我,说:
02:36
"Oh, Mom妈妈 and Dad, we have a doctor医生
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“爸爸妈妈,有个医生
02:38
that found发现 a diagnosis诊断 for that wrist.
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确诊了手腕的症状。
02:41
Do you want to come with the
doctor's医生 appointment约定 with me?"
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你们想和我一起见见那个医生吗?“
02:44
I said, "Sure, we'll come in."
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我说:“当然,我们就去。”
02:46
That morning早上, Pete皮特, John约翰 and I
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那天早上 Pete 、John 和我
02:49
all got up, got dressed连衣裙的, got in our cars汽车
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都早起梳洗,上了车——
02:52
three separate分离 cars汽车
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三辆车——
02:53
because we were going to go to work
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因为我们打算在见完医生并弄清楚他的手腕状况之后
02:55
after the doctor's医生 appointment约定 to
find out what happened发生 to the wrist.
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就直接去上班
02:58
We walked into the
neurologist's神经学家的 office办公室, satSAT down,
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我们走进神经科医师的办公室,坐好
03:01
four doctors医生 walk步行 in,
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四个医生走了进来
03:02
and the head neurologist神经学家 sits坐镇 down.
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领头的医师坐了下来
03:05
And he says, "Well, Pete皮特, we've我们已经
been looking at all the tests测试,
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他说:“Pete,我们看了所有的检测结果,
03:08
and I have to tell you,
it's not a sprained扭伤 wrist,
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我不得不告诉你,这不是普通的手腕扭伤,
03:11
it's not a broken破碎 wrist,
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不是手腕骨折,
03:13
it's not nerve神经 damage损伤 in the wrist,
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不是手腕神经坏死,
03:15
it's not an infection感染,
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不是感染,
03:17
it's not Lyme莱姆 disease疾病."
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也不是莱姆病。“
03:21
And there was this deliberate商榷
elimination消除 going up,
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医生有意地排除了这么多可能性之后
03:25
and I was thinking思维 to myself,
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我在想
03:26
where is he going with this?
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他到底想说什么?
03:30
Then he put his hands on his knees膝盖,
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然后他把手放在膝盖上
03:32
he looked看着 right at my
27-year-old-岁 kid孩子, and said,
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看着我27岁的孩子,说:
03:35
"I don't know how to
tell a 27-year-old-岁 this:
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“我不知道怎么告诉一个27岁的人这件事:
03:38
Pete皮特, you have ALSALS."
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Pete,你得了渐冻人症”
03:42
ALSALS?
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渐冻人症?
03:44
I had had a friend朋友 whose谁的
80-year-old-岁 father父亲 had ALSALS.
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我曾有一个朋友,
他80岁的父亲得了这个病
03:49
I looked看着 at my husband丈夫, he looked看着 at me,
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我看着我丈夫,他也看着我
03:51
and then we looked看着 at the
doctor医生, and we said, "ALSALS?
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然后我们看着医生,说:“渐冻人症?
03:53
Okay, what treatment治疗? Let's go.
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好吧,有什么治疗方法?
我们开始治疗吧。
03:56
What do we do? Let's go."
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我们能做什么? 开始做吧。“
03:59
And he looked看着 at us, and he
said, "Mr先生. and Mrs太太. FratesFrates,
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他看着我们,说:
“ Frates先生,Frates夫人
04:02
I'm sorry to tell you this,
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我很遗憾地告诉你们
04:04
but there's no treatment治疗
and there's no cure治愈."
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这病没有治疗方法,也不可能治愈。“
04:08
We were the worst最差 culprits罪魁祸首.
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我们是最差劲的父母
04:11
We didn't even understand理解
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我们甚至不能理解
04:14
that it had been 75 years年份 since以来 Lou Gehrig格里克
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从最初在卢`格里克身上发现这病至今,
已有75年
04:16
and nothing had been doneDONE
in the progress进展 against反对 ALSALS.
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但是对抗渐冻人症依然进展全无
04:21
So we all went home, and Jenn and Dan
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所以我们都回了家
Jenn和Dan从华尔街飞了回来
04:24
flew home from Wall Street,
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04:27
Andrew安德鲁 came来了 home from Charlestown查尔斯顿,
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Andrew从查尔斯顿赶来
04:29
and Pete皮特 went to B.C. to pick up
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Pete去了波士顿学院
04:32
his then-girlfriend当时的女友 Julie朱丽叶
and brought her home,
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接他当时的女友Julie回了家
04:35
and six hours小时 later后来 after diagnosis诊断,
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在确诊六个小时后
04:37
we're sitting坐在 around
having a family家庭 dinner晚餐,
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我们坐在一起享用家庭晚餐
04:40
and we're having small chat.
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进行一些随意的聊天
04:42
I don't even remember记得
cooking烹饪 dinner晚餐 that night.
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那天晚上我甚至不记得要煮饭
04:45
But then our leader领导, Pete皮特, set the vision视力,
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我们的领袖Pete 设定了愿景
04:51
and talked to us just like
we were his new team球队.
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他和我们讲话就像我们是他的新队员一样
04:54
He said, "There will be
no wallowing打滚, people."
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他开口道:”我们不能沉湎于此。“
04:58
He goes, "We're not looking back,
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他接着说:”我们也不能向后看,
05:00
we're looking forward前锋.
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而要向前展望。“
05:02
What an amazing惊人 opportunity机会
we have to change更改 the world世界.
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这是多让人惊喜的改变世界的机会啊
05:08
I'm going to change更改 the face面对
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我要改变
05:10
of this unacceptable不可接受 situation情况 of ALSALS.
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渐冻人症这无法令人接受的现状
05:14
We're going to move移动 the needle,
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我们要推进治疗渐冻人症的发展
05:15
and I'm going to get it in front面前
of philanthropists慈善家 like Bill法案 Gates盖茨."
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我要将这件事让比尔·盖茨一样的慈善家们知道
05:20
And that was it. We
were given特定 our directive指示.
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就这样 我们有了方向
05:23
So in the days and months个月 that followed其次,
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所以接下来的日子里
05:26
within a week, we had
our brothers兄弟 and sisters姐妹
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我们的兄弟姐妹等家人们
05:29
and our family家庭 come to us,
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在一周之内齐聚
05:31
that they were already已经
creating创建 Team球队 FrateFrate的 Train培养.
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他们已经创造了Frate训练团队
05:34
Uncle叔叔 Dave戴夫, he was the webmaster网站管理员;
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Dave叔叔 是网络管理人
05:36
Uncle叔叔 Artie阿蒂, he was the accountant会计;
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Artie叔叔 是会计师
05:39
Auntie阿姨 Dana达纳, she was the graphic图像 artist艺术家;
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Dana姨妈 是设计师
05:42
and my youngest最年轻的 son儿子, Andrew安德鲁,
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我最小的儿子 Andrew
05:44
quit放弃 his job工作, left his
apartment公寓 in Charlestown查尔斯顿
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辞了他的工作,离开了查尔斯顿的住处
05:47
and says, "I'm going to take care关心
of Pete皮特 and be his caregiver护理人员."
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他说:”我要照顾Pete,做他的护理师。“
05:51
Then all those people,
classmates同学, teammates队友,
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之后,Pete的同学、队友
05:54
coworkers合作伙伴 that Pete皮特 had inspired启发
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还有同事
这些被Pete的经历激励的人们
05:57
throughout始终 his whole整个 life,
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05:59
the circles of Pete皮特 all started开始
intersecting相交 with one another另一个,
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开始互相交流
06:03
and made制作 Team球队 FrateFrate的 Train培养.
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组成了Frate团队
06:07
Six months个月 after diagnosis诊断,
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确诊六个月以后
06:10
Pete皮特 was given特定 an award at a
research研究 summit首脑 for advocacy拥护.
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Pete 被某研究峰会授予了一个奖项
06:15
He got up and gave a very eloquent雄辩 speech言语,
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他起身做了一个非常棒的演讲
06:17
and at the end结束 of the
speech言语, there was a panel面板,
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在演讲的最后有一个座谈会
06:20
and on the panel面板 were these
pharmaceutical制药 executives高管
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参会人员有医药高管
06:23
and biochemists生物化学家 and clinicians临床医生
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有生化学家和临床医师
06:25
and I'm sitting坐在 there and
I'm listening to them
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我坐在那 听他们的讲话
06:28
and most of the content内容
went straight直行 over my head.
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大部分内容都左耳进右耳出
06:31
I avoided避免 every一切 science科学
class I ever could.
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我尽可能忽略掉了那些科学课
06:33
But I was watching观看 these people,
and I was listening to them,
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但我看着这些人 听他们讲话
06:36
and they were saying,
"I, I do this, I do that,"
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他们说 “我 我做了这个 我做了那个”
06:39
and there was a real真实
unfamiliarity不熟悉 between之间 them.
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他们之间隔着明显的生疏感
06:43
So at the end结束 of their talk, the panel面板,
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在座谈会的最后
06:46
they had questions问题 and answers答案,
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有提问环节
06:48
and boom繁荣, my hand went right up,
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我的手立刻举起来
06:50
and I get the microphone麦克风,
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我拿到了麦克风
06:51
and I look at them and I say, "Thank you.
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我看着他们 我说 “谢谢,
06:53
Thank you so much for working加工 in ALSALS.
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谢谢你们为治愈渐冻人症做的努力
06:56
It means手段 so very much to us."
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这对我们来说很重要。”
06:57
I said, "But I do have to tell you
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我说 “但是我得告诉你们
06:59
that I'm watching观看 your body身体 language语言
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我观察了你们的肢体语言
07:01
and I'm listening to what you're saying.
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听了你们的讲话
07:03
It just doesn't seem似乎 like there's a whole整个
lot of collaboration合作 going on here.
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似乎你们之间并没有多少在整体上的合作
07:09
And not only that, where's哪里 the flip翻动 chart图表
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不止如此
接下来的行动、追踪、问责,这些都在哪展现了?
07:12
with the action行动 items项目 and the
follow-up跟进 and the accountability问责?
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07:17
What are you going to do
after you leave离开 this room房间?"
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你们离开这以后将会做什么?“
07:21
And then I turned转身 around
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我转过身去
07:23
and there was about 200 pairs
of eyes眼睛 just staring凝视 at me.
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大概有200双眼睛盯着我
07:30
And it was that point that I realized实现
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那时候我意识到
07:34
that I had talked about
the elephant in the room房间.
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我说到了禁忌
07:38
Thus从而 my mission任务 had begun开始.
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就这样 我的使命开始了
07:41
So over the next下一个 couple一对 of years年份,
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所以 在接下来的几年里
07:44
Pete皮特we've我们已经 had our highs高位 and our lows低点.
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Pete — 我们有过欢笑也有过泪水
07:47
Pete皮特 was put on a compassionate富于同情心的 use drug药物.
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Pete参与了试药
07:49
It was hope希望 in a bottle瓶子 for
the whole整个 ALSALS community社区.
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对所有渐冻人而言这药是一线希望
07:53
It was in a phase IIIIII trial审讯.
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药品已经进入三期临床测试
07:55
Then six months个月 later后来, the
data数据 comes back: no efficacy功效.
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六个月后 数据反馈回来了:无效
07:59
We were supposed应该 to
have therapies治疗 overseas海外,
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我们本该去海外接受治疗
08:02
and the rug地毯 was
pulled out from under us.
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但如今已为时太晚
08:04
So for the next下一个 two years年份,
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所以接下来的两年
08:06
we just watched看着 my son儿子
be taken采取 away from me,
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我们只能眼睁睁的看着我们的儿子远离我们
08:10
little by little every一切 day.
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一点一点 一天一天
08:14
Two and a half years年份 ago,
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两年半以前
08:16
Pete皮特 was hitting home
runs运行 at baseball棒球 fields领域.
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Pete还在棒球场上打全垒打
08:20
Today今天, Pete's皮特的 completely全然 paralyzed.
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今天 Pete完全瘫痪了
08:23
He can't hold保持 his head up any longer.
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他不能再抬头
08:26
He's confined受限 to a motorized机动的 wheelchair轮椅.
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他被限制在机动轮椅上
08:28
He can no longer swallow or eat.
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他不能再吞咽
08:31
He has a feeding馈送 tube.
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他有一根进食管
08:33
He can't speak说话.
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他不能讲话
08:37
He talks会谈 with eye gaze凝视 technology技术
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他用眼睛凝视技术
08:40
and a speech言语 generating发电 device设备,
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和演讲发声装置交流
08:42
and we're watching观看 his lungs,
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我们很关注他的肺
08:44
because his diaphragm光圈
eventually终于 is going to give out
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因为他的膈最终会消失
08:47
and then the decision决定 will be made制作
to put him on a ventilator换气扇 or not.
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那时候就得决定要不要为他装换气机
08:51
ALSALS robs抢劫 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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渐冻人症夺走了人所有的器官
但大脑却是完好的
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励志 speech言语 comes,
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第75界卢格里克激励演讲到来
09:10
and Pete皮特 is asked by MLBMLB.comCOM to write
an article文章 in the Bleacher漂白剂 Report报告.
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Pete被MLB网站邀请
在Bleacher Report上发表一篇文章
09:16
And it was very significant重大, because he
wrote it using运用 his eye gaze凝视 technology技术.
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这意义非常重大
因为这篇文章是他用眼睛凝视技术写的
09:23
Twenty二十 days later后来,
the ice started开始 to fall秋季.
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二十天后 冰桶挑战开始
09:29
On July七月 27th, Pete's皮特的
roommate室友 in New York纽约 City,
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7月27日 Pete在纽约的室友
09:34
wearing穿着 a Quinn奎因 For The Win赢得 shirt衬衫,
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穿了一件Quinn For The Win衬衫
09:36
signifying表意 Pat Quinn奎因, another另一个
ALSALS patient患者 known已知 in New York纽约,
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象征Pat Quinn
另一名纽约知名的渐冻人患者
09:40
and B.C. shorts短裤
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和波士顿学院的短裤
09:42
said, "I'm taking服用 the ALSALS
Ice Bucket Challenge挑战,"
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他说 ”我接受渐冻人冰桶挑战“
09:47
picked采摘的 up the ice, put it over his head.
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举起冰水倒在自己头上
09:49
"And I'm nominating提名 ..."
And he sent发送 it up to Boston波士顿.
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”我提名..." 他传到了波士顿
09:54
And that was on July七月 27th.
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那仅仅是7月27日
09:57
Over the next下一个 couple一对
of days, our news新闻 feed饲料
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接下来的几天里 我们的新闻里
10:00
was full充分 of family家庭 and friends朋友.
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都是家人和朋友
10:02
If you haven't没有 gone走了 back,
the nice不错 thing about FacebookFacebook的
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如果你们没有看过也不要紧
因为脸书有个优点
10:05
is that you have the dates日期, you can go back.
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就是有日期标注 你们可以翻回去
10:07
You've got to see Uncle叔叔 Artie's阿蒂的
human人的 Bloody血腥 Mary玛丽.
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你们一定得看看Artie叔叔的表现
10:11
I'm telling告诉 you, it's one of the best最好 ones那些,
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我敢保证 那是最精彩的视频之一
10:14
and that was probably大概 in day two.
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那大概是第二天的事
10:17
By about day four, Uncle叔叔
Dave戴夫, the webmaster网站管理员,
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到了第四天 网站管理人Dave叔叔
10:21
he isn't on FacebookFacebook的,
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他没有脸书
10:23
and I get a text文本 from him,
and it says, "Nancy南希,
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我收到一条他的短信
上面写着,“Nancy,
10:26
what the hell地狱 is going on?"
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这到底是怎么回事?”
10:29
Uncle叔叔 Dave戴夫 gets得到 a hit击中
every一切 time Pete's皮特的 website网站
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每次有人访问Pete的网站
Dave叔叔会收到提示
10:32
is gone走了 onto, and his
phone电话 was blowing up.
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他的手机快要爆炸了
10:36
So we all satSAT down and we realized实现,
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我们坐下来意识到
10:37
money is coming未来 in — how amazing惊人.
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钱来了—— 多难以置信
10:41
So we knew知道 awareness意识
would lead to funding资金,
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我们知道到关注能够带来资金
10:44
we just didn't know it would
only take a couple一对 of days.
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我们只是不知道这只用几天的功夫
10:47
So we got together一起, put our best最好
501(c)(3)s on Pete's皮特的 website网站,
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我们聚到一起 把最精彩的501(c)(3)视频
放到Pete的网站上
10:52
and off we went.
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自那之后
10:54
So week one, Boston波士顿 media媒体.
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第一周 波士顿媒体
10:57
Week two, national国民 media媒体.
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2468
第二周 国家媒体
11:00
It was during week two
that our neighbor邻居 next下一个 door
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到了第二周 我们隔壁的邻居
11:02
opened打开 up our door and threw a pizza比萨
217
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打开我们家的门 隔着厨房
扔进来一个披萨 说
11:05
across横过 the kitchen厨房 floor地板, saying,
218
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2360
11:07
"I think you people might威力
need food餐饮 in there."
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2939
”我觉得你们大概需要吃些东西“
11:10
(Laughter笑声)
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2205
(笑声)
11:12
Week three, celebrities名人
Entertainment娱乐 Tonight今晚,
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4016
第三周 名星节目—今夜娱乐
11:16
Access访问 Hollywood好莱坞.
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直通好莱坞
11:18
Week four, global全球BBCBBC, Irish爱尔兰的 Radio无线电.
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第四周 全球媒体 — 英国广播公司
和 爱尔兰广播电视局
11:24
Did anyone任何人 see "Lost丢失 In Translation翻译"?
224
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有人看过“迷失东京”吗?
11:27
My husband丈夫 did Japanese日本 television电视.
225
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我丈夫上了日本的电视节目
11:29
It was interesting有趣.
226
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1710
很有意思
11:31
(Laughter笑声)
227
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(笑声)
11:33
And those videos视频, the popular流行 ones那些.
228
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5762
这些视频 最受欢迎的视频
11:39
Paul保罗 Bissonnette'sBissonnette的
glacier冰川 video视频, incredible难以置信.
229
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4488
Paul Bissonnette的冰河视频 难以置信
11:43
How about the redemption赎回 nuns修女 of Dublin都柏林?
230
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2737
都柏林修女的视频怎么样?
11:46
Who's谁是 seen看到 that one?
231
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1705
谁看了那个?
11:48
It's absolutely绝对 fantastic奇妙.
232
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2587
绝对精彩
11:50
J.T., Justin贾斯汀 Timberlake汀布莱克.
233
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2217
J.T. 贾斯汀·汀布莱克
11:53
That's when we knew知道, that
was a real真实 A-list一个列表 celebrity名人.
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他是我们知道的真正的甲级名人
11:56
I go back on my texts文本, and I can see
235
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我翻看短信 我看到
11:59
"JTJT! JTJT!" My sister妹妹 texting发短信 me.
236
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“JT!JT!”我姐姐的短信
12:04
Angela安吉拉 Merkel默克尔, the chancellor校长 of Germany德国.
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3248
Angela Merkel 来自德国的挑战者
12:08
Incredible难以置信.
238
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难以置信
12:09
And the ALSALS patients耐心,
239
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2310
对于渐冻人症病人
12:12
you know what their favorite喜爱
ones那些 are, and their families'家庭'?
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3194
你们知道他们和他们的家人最喜欢的是哪个吗?
12:15
All of them.
241
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1590
是所有的
12:17
Because this misunderstood误解 and
underfunded资金不足 "rare罕见" disease疾病,
242
725050
4848
因为这些视频重新定义并捐助了“稀有”疾病
12:21
they just satSAT and watched看着 people
saying it over and over: "ALSALS, ALSALS."
243
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6480
他们看着人们一遍又一遍的说
“渐冻人症 渐冻人症”
12:28
It was unbelievable难以置信的.
244
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3209
这真难以置信
12:31
And those naysayers反对者,
245
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那些反对者
12:33
let's just talk a couple一对
of stats统计, shall we?
246
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2839
让我们举几个例子好吗
12:36
Okay, so the ALSALS Association协会,
247
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2638
好了 所以渐冻人症协会
12:39
they think by year end结束,
it'll它会 be 160 million百万 dollars美元.
248
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3957
他们认为到年底会收到16亿美元捐款
12:43
ALSALS TDITDI in Cambridge剑桥,
249
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剑桥的渐冻人治疗研发机构
12:45
they raised上调 three million百万 dollars美元.
250
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2052
他们筹集到了三百万美金
12:47
Well, guess猜测 what?
251
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1442
猜猜然后怎么了
12:49
They had a clinical临床 trial审讯 for a drug药物
that they've他们已经 been developing发展.
252
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他们拿到了一个新研发药品的临床试验
12:52
It was on a three-year三年 track跟踪 for funding资金.
253
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曾经是三年期限资助
12:55
Two months个月.
254
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1487
现在 两个月
12:57
It's coming未来 out starting开始 in two months个月.
255
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两个月之内开始
12:59
(Applause掌声)
256
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(掌声)
13:05
And YouTubeYouTube的 has reported报道
257
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5015
据YouTube报道
13:10
that over 150 countries国家 have posted发布
Ice Bucket Challenges挑战 for ALSALS.
258
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已经有超过150个国家发布了渐冻人症冰桶挑战
13:17
And FacebookFacebook的, 2.5 million百万 videos视频,
259
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6571
脸书上有250万视频
13:24
and I had the awesome真棒 adventure冒险
260
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3115
我有幸在上周
13:27
visiting访问 the FacebookFacebook的 campus校园 last week,
261
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2720
拜访了脸书总部
13:30
and I said to them, "I know
what it was like in my house.
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2767
我和他们说:“我知道我是什么感觉
13:33
I can't imagine想像 what it
was like around here."
263
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2620
我不能想象你们是什么感觉”
13:35
All she said was, "Jaw-dropping令人惊叹."
264
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4713
她说: “简直惊呆了”
13:40
And my family's家庭的 favorite喜爱 video视频?
265
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我们家最喜欢的视频是什么呢
13:45
Bill法案 Gates盖茨.
266
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3206
比尔 盖茨的
13:48
Because the night Pete皮特 was diagnosed确诊,
267
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3083
因为Pete确诊那晚
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盖茨,
268
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7585
他说他要让像比尔盖茨一样的慈善家知道渐冻人症
13:59
and he did it.
269
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1546
他做到了
14:00
Goal目标 number one, check.
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第一个目标 完成
14:03
Now on to the treatment治疗 and cure治愈.
271
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1943
现在目标是治疗和治愈
14:05
(Applause掌声)
272
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(掌声)
14:14
So okay, after all of this ice,
273
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3054
好了 在冰桶挑战以后
14:17
we know that it was much more
274
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1896
我们知道这不止是
14:19
than just pouring浇注 buckets水桶 of
ice water over your head,
275
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2822
把一桶冰水浇在头上
14:22
and I really would like to leave离开 you
276
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我真的希望和你们分享的是
14:24
with a couple一对 of things that
I'd like you to remember记得.
277
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几件我希望你们会记得的事
14:27
The first thing is,
278
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1675
第一件事是
14:28
every一切 morning早上 when you wake唤醒 up,
279
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2226
每天早上当你醒来的时候
14:31
you can choose选择 to live生活 your day in positivity阳性.
280
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3076
你可以选择积极的生活
14:36
Would any of you blame me
281
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2271
你们中会有人责怪我吗
14:38
if I just was in the fetal position位置
282
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2339
如果我只是像个婴儿一样逃避
14:40
and pulled the covers盖子
over my head every一切 day?
283
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3237
用裹布蒙住自己的头自欺欺人
14:44
No, I don't think anybody任何人 would blame me,
284
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2212
不 我不觉得会有人责怪我
14:46
but Pete皮特 has inspired启发 us to wake唤醒 up
285
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3002
但Pete鼓励我们每天早上醒来
14:49
every一切 morning早上 and be
positive and proactive主动.
286
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3186
并且积极主动地生活
14:52
I actually其实 had to ditch support支持 groups
287
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2804
事实上我得寻找支持的团队
14:55
because everybody每个人 was in there saying that
288
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2479
因为所有人都在说
14:57
spraying their lawns草坪 with chemicals化学制品,
289
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1834
在草地上喷洒化学物质
14:59
that's why they got ALSALS,
290
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1868
这就是为什么他们得了渐冻人症
15:01
and I was like, "I don't think so,"
291
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我说 “我不这么认为”
15:03
but I had to get away from the negativity消极.
292
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我不得不远离消极
15:07
The second第二 thing I want to leave离开 you with
293
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第二件我想和你们分享的事
15:10
is the person at the
middle中间 of the challenge挑战
294
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是面对挑战的人
15:13
has to be willing愿意 to have
the mental心理 toughness韧性
295
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一定得内心坚强
15:16
to put themselves他们自己 out there.
296
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把自己从悲观中解救出来
15:19
Pete皮特 still goes to baseball棒球 games游戏
297
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Pete仍然参加棒球比赛
15:22
and he still sits坐镇 with his
teammates队友 in the dugout独木舟,
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他仍然和他的队友坐在一起
15:25
and he hangs挂起 his gravity重力 feed饲料 bag
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他把利用重力的进食袋
15:28
right on the cages笼子.
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挂在防护栏
15:29
You'll你会 see the kids孩子, they're
up there hanging it up.
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你们会看到孩子们 起身替他挂好
15:31
"Pete皮特, is that okay?" "Yup."
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“Pete 这样行么?” “当然”
15:32
And then they put it
right into his stomach.
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然后他们把进食管放进他的胃里
15:36
Because he wants them to see
what the reality现实 of this is,
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因为他想要他们看到渐冻人的真实生活
15:39
and how he's never, ever going to give up.
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以及他是怎样永不言弃
15:43
And the third第三 thing I
want to leave离开 you with:
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第三件我想和你们分享的事
15:45
If you ever come across横过 a situation情况
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如果你遇到这样的情况
15:48
that you see as so unacceptable不可接受,
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你觉得是如此不能接受
15:51
I want you to dig down as deep as you can
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我想你尽可能地深思
15:55
and find your best最好 mother母亲 bear
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找到希望
15:58
and go after it.
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并追寻希望
16:00
(Applause掌声)
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(掌声)
16:34
Thank you.
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2068
谢谢
16:36
(Applause掌声)
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(掌声)
16:40
I know that I'm running赛跑 over,
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我知道 我的演讲超时了
16:42
but I've got to leave离开 you with this:
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但我还要和你们分享
16:44
the gifts礼品 that my son儿子 has given特定 me.
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我儿子送给我的礼物
16:47
I have had 29 years年份
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29年来
16:50
of having the honor荣誉 of being存在 the mother母亲
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我有幸成为
16:53
of Pete皮特 FratesFrates.
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Pete Frates的母亲
16:55
Pete皮特 FratesFrates has been inspiring鼓舞人心
and leading领导 his whole整个 life.
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Pete Frates一直在激励和领导他自己的生活
17:00
He's thrown抛出 out kindness善良,
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他播种善良
17:03
and all that kindness善良
has come back to him.
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也收获了善良
17:06
He walks散步 the face面对 of the Earth地球
right now and knows知道 why he's here.
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6439
他知道当下活着的意义
17:13
What a gift礼品.
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多么珍贵的礼物
17:16
The second第二 thing that my son儿子 has given特定 me
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第二件我儿子送给我的礼物
17:18
is he's given特定 me my mission任务 in life.
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是他给予我人生的意义
17:21
Now I know why I'm here.
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现在我知道为什么而活
17:23
I'm going to save保存 my son儿子,
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我要拯救我的儿子
17:26
and if it doesn't happen发生 in time for him,
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如果我没能及时救他
17:29
I'm going to work so that no other mother母亲
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我会继续工作 这样其他妈妈
17:32
has to go through通过 what I'm going through通过.
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就不会有和我相同的经历
17:35
And the third第三 thing,
and last but not least最小
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第三件事,最后一件但并非不重要的事是
17:38
gift礼品 that my son儿子 has given特定 me,
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我儿子送给我的礼物
17:41
as an exclamation感叹 point
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像个惊叹号一样
17:43
to the miraculous神奇 month
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发生在这个奇迹的时刻
17:45
of August八月 2014:
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2014年的8月
17:49
That girlfriend女朋友 that he went to get on
the night of diagnosis诊断 is now his wife妻子,
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那个在他确诊的夜晚他去接的女孩
现在是他的妻子了
17:55
and Pete皮特 and Julie朱丽叶 have given特定 me my
granddaughter孙女, Lucy露西 Fitzgerald菲茨杰拉德 FratesFrates.
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Pete和Julie已经生下我的孙女
Lucy Fitzgerald Frates
18:03
Lucy露西 Fitzgerald菲茨杰拉德 FratesFrates came来了 two weeks early
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Lucy Fitzgerald Frates早产了两周
18:08
as the exclamation感叹 point
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作为惊叹号
18:10
on August八月 31stST, 2014.
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在2014年8月31日出生
18:15
And so —
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所以
18:16
(Applause掌声) —
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8884
(掌声)
18:25
And so let me leave离开 you with
Pete's皮特的 words of inspiration灵感
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所以让我和你们分享Pete激励的话语
18:29
that he would use to classmates同学,
coworkers合作伙伴 and teammates队友.
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他对同学、同事和队友说过的话
18:36
Be passionate多情.
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永远热情
18:40
Be genuine真正.
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永远真诚
18:42
Be hardworking用功.
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永远勤奋
18:45
And don't forget忘记 to be great.
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还有别忘了做个好人
18:49
Thank you. (Applause掌声)
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谢谢 (掌声)
Translated by Yiwei Xu
Reviewed by Aimee Zhou

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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