Nancy Frates: Why my family started the ALS Ice Bucket Challenge. The rest is history

翻译人员: Yiwei Xu 校对人员: Aimee Zhou

Well, good afternoon.

大家下午好

How many of you

你们中有多少人

took the ALS Ice Bucket Challenge?

参加了冰桶挑战？

(掌声)

(Applause)

Woo hoo!

哦耶！

Well, I have to tell you, from the bottom of our hearts,

我在此对你们表达衷心的谢意，

thank you so very, very much.

非常感谢你们！谢谢！

Do you know to date the ALS Association

你们知道目前为止渐冻人（ALS）协会

has raised 125 million dollars?

已筹集到1.25亿美元了吗？

Woo hoo! (Applause)

哦耶！（掌声）

It takes me back to the summer of 2011.

这让我又想起2011年夏天

My family, my kids had all grown up.

我的孩子们都已经长大成人

We were officially empty nesters,

而我们也正式成了空巢老人

and we decided, let's go on a family vacation.

于是我们决定操办一场家庭聚会

Jenn, my daughter, and my son-in-law

我的女儿 Jenn 以及我的女婿

came down from New York.

从纽约回来

My youngest, Andrew,

我最小的孩子 Andrew

he came down from his home in Charlestown

从查尔斯顿的家中过来

where he was working in Boston,

他在波士顿工作

and my son Pete,

还有我的儿子 Pete

who had played at Boston College, baseball,

他曾是波士顿学院棒球手

had played baseball professionally in Europe,

参加过欧洲的职业棒球赛

and had now come home and was selling group insurance, he also joined us.

当时从事卖团体保险的工作， 也加入了我们

And one night, I found myself

有一天晚上

having a beer with Pete,

我和Pete喝了一杯

and Pete was looking at me and he just said,

Pete 看着我说：

"You know, Mom, I don't know,

“妈妈，我觉得吧

selling group insurance is just not my passion."

卖团体保险不是我的热情所在。“

He said, "I just don't feel I'm living up to my potential.

他说，“我觉得这项工作辜负了我的潜力，

I don't feel this is my mission in life."

我觉得这不是我的人生使命。“

And he said, "You know, oh by the way, Mom,

他还说：“噢，对了， 妈妈

I have to leave early from vacation

我得提前离开

because my inter-city league team that I play for made the playoffs,

因为我效力的队伍打进了季后赛

and I have to get back to Boston because I can't let my team down.

我得回波士顿去， 因为我不能让我的队友失望

I'm just not as passionate about my job

我只是对我的工作

as I am about baseball."

没有像对待棒球那样的热情。“

So off Pete went, and left the family vacation —

因此Pete提前离开了

break a mother's heart —

碎了当妈的心

and he went, and we followed four days later

然后他去了波士顿， 四天以后我们也跟去了

to see the next playoff game.

去看即将到来的季后赛

We're at the playoff game, Pete's at the plate,

我们在季后赛现场，Pete 在垒上

and a fastball's coming in,

一个快球过来

and it hits him on the wrist.

打在了他的手腕上

Oh, Pete.

噢，Pete

His wrist went completely limp, like this.

他的手腕完全瘫软了，就像这样

So for the next six months,

所以接下来的六个月里

Pete went back to his home in Southie,

Pete回了他在波士顿南部的家

kept working that unpassionate job,

继续做那份没有热情的工作

and was going to doctors

并去看医生

to see what was wrong with this wrist

检查他的手腕出了什么问题

that never came back.

怎么复原不了

Six months later, in March,

六个月以后，三月里

he called my husband and me, and he said,

他打电话给我丈夫和我，说：

"Oh, Mom and Dad, we have a doctor

“爸爸妈妈，有个医生

that found a diagnosis for that wrist.

确诊了手腕的症状。

Do you want to come with the doctor's appointment with me?"

你们想和我一起见见那个医生吗？“

I said, "Sure, we'll come in."

我说：“当然，我们就去。”

That morning, Pete, John and I

那天早上 Pete 、John 和我

all got up, got dressed, got in our cars —

都早起梳洗，上了车——

three separate cars

三辆车——

because we were going to go to work

因为我们打算在见完医生并弄清楚他的手腕状况之后

after the doctor's appointment to find out what happened to the wrist.

就直接去上班

We walked into the neurologist's office, sat down,

我们走进神经科医师的办公室，坐好

four doctors walk in,

四个医生走了进来

and the head neurologist sits down.

领头的医师坐了下来

And he says, "Well, Pete, we've been looking at all the tests,

他说：“Pete，我们看了所有的检测结果，

and I have to tell you, it's not a sprained wrist,

我不得不告诉你，这不是普通的手腕扭伤，

it's not a broken wrist,

不是手腕骨折，

it's not nerve damage in the wrist,

不是手腕神经坏死，

it's not an infection,

不是感染，

it's not Lyme disease."

也不是莱姆病。“

And there was this deliberate elimination going up,

医生有意地排除了这么多可能性之后

and I was thinking to myself,

我在想

where is he going with this?

他到底想说什么？

Then he put his hands on his knees,

然后他把手放在膝盖上

he looked right at my 27-year-old kid, and said,

看着我27岁的孩子，说：

"I don't know how to tell a 27-year-old this:

“我不知道怎么告诉一个27岁的人这件事：

Pete, you have ALS."

Pete，你得了渐冻人症”

ALS?

渐冻人症？

I had had a friend whose 80-year-old father had ALS.

我曾有一个朋友， 他80岁的父亲得了这个病

I looked at my husband, he looked at me,

我看着我丈夫，他也看着我

and then we looked at the doctor, and we said, "ALS?

然后我们看着医生，说：“渐冻人症？

Okay, what treatment? Let's go.

好吧，有什么治疗方法？ 我们开始治疗吧。

What do we do? Let's go."

我们能做什么？ 开始做吧。“

And he looked at us, and he said, "Mr. and Mrs. Frates,

他看着我们，说： “ Frates先生，Frates夫人

I'm sorry to tell you this,

我很遗憾地告诉你们

but there's no treatment and there's no cure."

这病没有治疗方法，也不可能治愈。“

We were the worst culprits.

我们是最差劲的父母

We didn't even understand

我们甚至不能理解

that it had been 75 years since Lou Gehrig

从最初在卢`格里克身上发现这病至今， 已有75年

and nothing had been done in the progress against ALS.

但是对抗渐冻人症依然进展全无

So we all went home, and Jenn and Dan

所以我们都回了家

flew home from Wall Street,

Jenn和Dan从华尔街飞了回来

Andrew came home from Charlestown,

Andrew从查尔斯顿赶来

and Pete went to B.C. to pick up

Pete去了波士顿学院

his then-girlfriend Julie and brought her home,

接他当时的女友Julie回了家

and six hours later after diagnosis,

在确诊六个小时后

we're sitting around having a family dinner,

我们坐在一起享用家庭晚餐

and we're having small chat.

进行一些随意的聊天

I don't even remember cooking dinner that night.

那天晚上我甚至不记得要煮饭

But then our leader, Pete, set the vision,

我们的领袖Pete 设定了愿景

and talked to us just like we were his new team.

他和我们讲话就像我们是他的新队员一样

He said, "There will be no wallowing, people."

他开口道：”我们不能沉湎于此。“

He goes, "We're not looking back,

他接着说：”我们也不能向后看，

we're looking forward.

而要向前展望。“

What an amazing opportunity we have to change the world.

这是多让人惊喜的改变世界的机会啊

I'm going to change the face

我要改变

of this unacceptable situation of ALS.

渐冻人症这无法令人接受的现状

We're going to move the needle,

我们要推进治疗渐冻人症的发展

and I'm going to get it in front of philanthropists like Bill Gates."

我要将这件事让比尔·盖茨一样的慈善家们知道

And that was it. We were given our directive.

就这样 我们有了方向

So in the days and months that followed,

所以接下来的日子里

within a week, we had our brothers and sisters

我们的兄弟姐妹等家人们

and our family come to us,

在一周之内齐聚

that they were already creating Team Frate Train.

他们已经创造了Frate训练团队

Uncle Dave, he was the webmaster;

Dave叔叔 是网络管理人

Uncle Artie, he was the accountant;

Artie叔叔 是会计师

Auntie Dana, she was the graphic artist;

Dana姨妈 是设计师

and my youngest son, Andrew,

我最小的儿子 Andrew

quit his job, left his apartment in Charlestown

辞了他的工作，离开了查尔斯顿的住处

and says, "I'm going to take care of Pete and be his caregiver."

他说：”我要照顾Pete，做他的护理师。“

Then all those people, classmates, teammates,

之后，Pete的同学、队友

coworkers that Pete had inspired

还有同事

这些被Pete的经历激励的人们

throughout his whole life,

the circles of Pete all started intersecting with one another,

开始互相交流

and made Team Frate Train.

组成了Frate团队

Six months after diagnosis,

确诊六个月以后

Pete was given an award at a research summit for advocacy.

Pete 被某研究峰会授予了一个奖项

He got up and gave a very eloquent speech,

他起身做了一个非常棒的演讲

and at the end of the speech, there was a panel,

在演讲的最后有一个座谈会

and on the panel were these pharmaceutical executives

参会人员有医药高管

and biochemists and clinicians

有生化学家和临床医师

and I'm sitting there and I'm listening to them

我坐在那 听他们的讲话

and most of the content went straight over my head.

大部分内容都左耳进右耳出

I avoided every science class I ever could.

我尽可能忽略掉了那些科学课

But I was watching these people, and I was listening to them,

但我看着这些人 听他们讲话

and they were saying, "I, I do this, I do that,"

他们说 “我 我做了这个 我做了那个”

and there was a real unfamiliarity between them.

他们之间隔着明显的生疏感

So at the end of their talk, the panel,

在座谈会的最后

they had questions and answers,

有提问环节

and boom, my hand went right up,

我的手立刻举起来

and I get the microphone,

我拿到了麦克风

and I look at them and I say, "Thank you.

我看着他们 我说 “谢谢，

Thank you so much for working in ALS.

谢谢你们为治愈渐冻人症做的努力

It means so very much to us."

这对我们来说很重要。”

I said, "But I do have to tell you

我说 “但是我得告诉你们

that I'm watching your body language

我观察了你们的肢体语言

and I'm listening to what you're saying.

听了你们的讲话

It just doesn't seem like there's a whole lot of collaboration going on here.

似乎你们之间并没有多少在整体上的合作

And not only that, where's the flip chart

不止如此

接下来的行动、追踪、问责，这些都在哪展现了？

with the action items and the follow-up and the accountability?

What are you going to do after you leave this room?"

你们离开这以后将会做什么？“

And then I turned around

我转过身去

and there was about 200 pairs of eyes just staring at me.

大概有200双眼睛盯着我

And it was that point that I realized

那时候我意识到

that I had talked about the elephant in the room.

我说到了禁忌

Thus my mission had begun.

就这样 我的使命开始了

So over the next couple of years,

所以 在接下来的几年里

Pete — we've had our highs and our lows.

Pete — 我们有过欢笑也有过泪水

Pete was put on a compassionate use drug.

Pete参与了试药

It was hope in a bottle for the whole ALS community.

对所有渐冻人而言这药是一线希望

It was in a phase III trial.

药品已经进入三期临床测试

Then six months later, the data comes back: no efficacy.

六个月后 数据反馈回来了：无效

We were supposed to have therapies overseas,

我们本该去海外接受治疗

and the rug was pulled out from under us.

但如今已为时太晚

So for the next two years,

所以接下来的两年

we just watched my son be taken away from me,

我们只能眼睁睁的看着我们的儿子远离我们

little by little every day.

一点一点 一天一天

Two and a half years ago,

两年半以前

Pete was hitting home runs at baseball fields.

Pete还在棒球场上打全垒打

Today, Pete's completely paralyzed.

今天 Pete完全瘫痪了

He can't hold his head up any longer.

他不能再抬头

He's confined to a motorized wheelchair.

他被限制在机动轮椅上

He can no longer swallow or eat.

他不能再吞咽

He has a feeding tube.

他有一根进食管

He can't speak.

他不能讲话

He talks with eye gaze technology

他用眼睛凝视技术

and a speech generating device,

和演讲发声装置交流

and we're watching his lungs,

我们很关注他的肺

because his diaphragm eventually is going to give out

因为他的膈最终会消失

and then the decision will be made to put him on a ventilator or not.

那时候就得决定要不要为他装换气机

ALS robs the human of all their physical parts, but the brain stays intact.

渐冻人症夺走了人所有的器官 但大脑却是完好的

So July 4th, 2014,

2014年7月4日

75th year of Lou Gehrig's inspirational speech comes,

第75界卢格里克激励演讲到来

and Pete is asked by MLB.com to write an article in the Bleacher Report.

Pete被MLB网站邀请 在Bleacher Report上发表一篇文章

And it was very significant, because he wrote it using his eye gaze technology.

这意义非常重大 因为这篇文章是他用眼睛凝视技术写的

Twenty days later, the ice started to fall.

二十天后 冰桶挑战开始

On July 27th, Pete's roommate in New York City,

7月27日 Pete在纽约的室友

wearing a Quinn For The Win shirt,

穿了一件Quinn For The Win衬衫

signifying Pat Quinn, another ALS patient known in New York,

象征Pat Quinn 另一名纽约知名的渐冻人患者

and B.C. shorts

和波士顿学院的短裤

said, "I'm taking the ALS Ice Bucket Challenge,"

他说 ”我接受渐冻人冰桶挑战“

picked up the ice, put it over his head.

举起冰水倒在自己头上

"And I'm nominating ..." And he sent it up to Boston.

”我提名..." 他传到了波士顿

And that was on July 27th.

那仅仅是7月27日

Over the next couple of days, our news feed

接下来的几天里 我们的新闻里

was full of family and friends.

都是家人和朋友

If you haven't gone back, the nice thing about Facebook

如果你们没有看过也不要紧 因为脸书有个优点

is that you have the dates, you can go back.

就是有日期标注 你们可以翻回去

You've got to see Uncle Artie's human Bloody Mary.

你们一定得看看Artie叔叔的表现

I'm telling you, it's one of the best ones,

我敢保证 那是最精彩的视频之一

and that was probably in day two.

那大概是第二天的事

By about day four, Uncle Dave, the webmaster,

到了第四天 网站管理人Dave叔叔

he isn't on Facebook,

他没有脸书

and I get a text from him, and it says, "Nancy,

我收到一条他的短信 上面写着，“Nancy，

what the hell is going on?"

这到底是怎么回事？”

Uncle Dave gets a hit every time Pete's website

每次有人访问Pete的网站 Dave叔叔会收到提示

is gone onto, and his phone was blowing up.

他的手机快要爆炸了

So we all sat down and we realized,

我们坐下来意识到

money is coming in — how amazing.

钱来了—— 多难以置信

So we knew awareness would lead to funding,

我们知道到关注能够带来资金

we just didn't know it would only take a couple of days.

我们只是不知道这只用几天的功夫

So we got together, put our best 501(c)(3)s on Pete's website,

我们聚到一起 把最精彩的501(c)(3)视频 放到Pete的网站上

and off we went.

自那之后

So week one, Boston media.

第一周 波士顿媒体

Week two, national media.

第二周 国家媒体

It was during week two that our neighbor next door

到了第二周 我们隔壁的邻居

opened up our door and threw a pizza

打开我们家的门 隔着厨房

扔进来一个披萨 说

across the kitchen floor, saying,

"I think you people might need food in there."

”我觉得你们大概需要吃些东西“

(Laughter)

（笑声）

Week three, celebrities — Entertainment Tonight,

第三周 名星节目—今夜娱乐

Access Hollywood.

直通好莱坞

Week four, global — BBC, Irish Radio.

第四周 全球媒体 — 英国广播公司 和 爱尔兰广播电视局

Did anyone see "Lost In Translation"?

有人看过“迷失东京”吗？

My husband did Japanese television.

我丈夫上了日本的电视节目

It was interesting.

很有意思

(Laughter)

（笑声）

And those videos, the popular ones.

这些视频 最受欢迎的视频

Paul Bissonnette's glacier video, incredible.

Paul Bissonnette的冰河视频 难以置信

How about the redemption nuns of Dublin?

都柏林修女的视频怎么样？

Who's seen that one?

谁看了那个？

It's absolutely fantastic.

绝对精彩

J.T., Justin Timberlake.

J.T. 贾斯汀·汀布莱克

That's when we knew, that was a real A-list celebrity.

他是我们知道的真正的甲级名人

I go back on my texts, and I can see

我翻看短信 我看到

"JT! JT!" My sister texting me.

“JT!JT!”我姐姐的短信

Angela Merkel, the chancellor of Germany.

Angela Merkel 来自德国的挑战者

Incredible.

难以置信

And the ALS patients,

对于渐冻人症病人

you know what their favorite ones are, and their families'?

你们知道他们和他们的家人最喜欢的是哪个吗？

All of them.

是所有的

Because this misunderstood and underfunded "rare" disease,

因为这些视频重新定义并捐助了“稀有”疾病

they just sat and watched people saying it over and over: "ALS, ALS."

他们看着人们一遍又一遍的说 “渐冻人症 渐冻人症”

It was unbelievable.

这真难以置信

And those naysayers,

那些反对者

let's just talk a couple of stats, shall we?

让我们举几个例子好吗

Okay, so the ALS Association,

好了 所以渐冻人症协会

they think by year end, it'll be 160 million dollars.

他们认为到年底会收到16亿美元捐款

ALS TDI in Cambridge,

剑桥的渐冻人治疗研发机构

they raised three million dollars.

他们筹集到了三百万美金

Well, guess what?

猜猜然后怎么了

They had a clinical trial for a drug that they've been developing.

他们拿到了一个新研发药品的临床试验

It was on a three-year track for funding.

曾经是三年期限资助

Two months.

现在 两个月

It's coming out starting in two months.

两个月之内开始

(Applause)

（掌声）

And YouTube has reported

据YouTube报道

that over 150 countries have posted Ice Bucket Challenges for ALS.

已经有超过150个国家发布了渐冻人症冰桶挑战

And Facebook, 2.5 million videos,

脸书上有250万视频

and I had the awesome adventure

我有幸在上周

visiting the Facebook campus last week,

拜访了脸书总部

and I said to them, "I know what it was like in my house.

我和他们说：“我知道我是什么感觉

I can't imagine what it was like around here."

我不能想象你们是什么感觉”

All she said was, "Jaw-dropping."

她说： “简直惊呆了”

And my family's favorite video?

我们家最喜欢的视频是什么呢

Bill Gates.

比尔 盖茨的

Because the night Pete was diagnosed,

因为Pete确诊那晚

he told us that he was going to get ALS in front of philanthropists like Bill Gates,

他说他要让像比尔盖茨一样的慈善家知道渐冻人症

and he did it.

他做到了

Goal number one, check.

第一个目标 完成

Now on to the treatment and cure.

现在目标是治疗和治愈

(Applause)

（掌声）

So okay, after all of this ice,

好了 在冰桶挑战以后

we know that it was much more

我们知道这不止是

than just pouring buckets of ice water over your head,

把一桶冰水浇在头上

and I really would like to leave you

我真的希望和你们分享的是

with a couple of things that I'd like you to remember.

几件我希望你们会记得的事

The first thing is,

第一件事是

every morning when you wake up,

每天早上当你醒来的时候

you can choose to live your day in positivity.

你可以选择积极的生活

Would any of you blame me

你们中会有人责怪我吗

if I just was in the fetal position

如果我只是像个婴儿一样逃避

and pulled the covers over my head every day?

用裹布蒙住自己的头自欺欺人

No, I don't think anybody would blame me,

不 我不觉得会有人责怪我

but Pete has inspired us to wake up

但Pete鼓励我们每天早上醒来

every morning and be positive and proactive.

并且积极主动地生活

I actually had to ditch support groups

事实上我得寻找支持的团队

because everybody was in there saying that

因为所有人都在说

spraying their lawns with chemicals,

在草地上喷洒化学物质

that's why they got ALS,

这就是为什么他们得了渐冻人症

and I was like, "I don't think so,"

我说 “我不这么认为”

but I had to get away from the negativity.

我不得不远离消极

The second thing I want to leave you with

第二件我想和你们分享的事

is the person at the middle of the challenge

是面对挑战的人

has to be willing to have the mental toughness

一定得内心坚强

to put themselves out there.

把自己从悲观中解救出来

Pete still goes to baseball games

Pete仍然参加棒球比赛

and he still sits with his teammates in the dugout,

他仍然和他的队友坐在一起

and he hangs his gravity feed bag

他把利用重力的进食袋

right on the cages.

挂在防护栏

You'll see the kids, they're up there hanging it up.

你们会看到孩子们 起身替他挂好

"Pete, is that okay?" "Yup."

“Pete 这样行么？” “当然”

And then they put it right into his stomach.

然后他们把进食管放进他的胃里

Because he wants them to see what the reality of this is,

因为他想要他们看到渐冻人的真实生活

and how he's never, ever going to give up.

以及他是怎样永不言弃

And the third thing I want to leave you with:

第三件我想和你们分享的事

If you ever come across a situation

如果你遇到这样的情况

that you see as so unacceptable,

你觉得是如此不能接受

I want you to dig down as deep as you can

我想你尽可能地深思

and find your best mother bear

找到希望

and go after it.

并追寻希望

(Applause)

（掌声）

Thank you.

谢谢

(Applause)

（掌声）

I know that I'm running over,

我知道 我的演讲超时了

but I've got to leave you with this:

但我还要和你们分享

the gifts that my son has given me.

我儿子送给我的礼物

I have had 29 years

29年来

of having the honor of being the mother

我有幸成为

of Pete Frates.

Pete Frates的母亲

Pete Frates has been inspiring and leading his whole life.

Pete Frates一直在激励和领导他自己的生活

He's thrown out kindness,

他播种善良

and all that kindness has come back to him.

也收获了善良

He walks the face of the Earth right now and knows why he's here.

他知道当下活着的意义

What a gift.

多么珍贵的礼物

The second thing that my son has given me

第二件我儿子送给我的礼物

is he's given me my mission in life.

是他给予我人生的意义

Now I know why I'm here.

现在我知道为什么而活

I'm going to save my son,

我要拯救我的儿子

and if it doesn't happen in time for him,

如果我没能及时救他

I'm going to work so that no other mother

我会继续工作 这样其他妈妈

has to go through what I'm going through.

就不会有和我相同的经历

And the third thing, and last but not least

第三件事，最后一件但并非不重要的事是

gift that my son has given me,

我儿子送给我的礼物

as an exclamation point

像个惊叹号一样

to the miraculous month

发生在这个奇迹的时刻

of August 2014:

2014年的8月

That girlfriend that he went to get on the night of diagnosis is now his wife,

那个在他确诊的夜晚他去接的女孩 现在是他的妻子了

and Pete and Julie have given me my granddaughter, Lucy Fitzgerald Frates.

Pete和Julie已经生下我的孙女 Lucy Fitzgerald Frates

Lucy Fitzgerald Frates came two weeks early

Lucy Fitzgerald Frates早产了两周

as the exclamation point

作为惊叹号

on August 31st, 2014.

在2014年8月31日出生

And so —

所以

(Applause) —

（掌声）

And so let me leave you with Pete's words of inspiration

所以让我和你们分享Pete激励的话语

that he would use to classmates, coworkers and teammates.

他对同学、同事和队友说过的话

Be passionate.

永远热情

Be genuine.

永远真诚

Be hardworking.

永远勤奋

And don't forget to be great.

还有别忘了做个好人

Thank you. (Applause)

谢谢 （掌声）