How many of you

你們中有多少人

took the ALS Ice Bucket Challenge?

參加了ALS（肌萎縮側索硬化症） 漸凍人冰桶挑戰？

(Applause)

（掌聲）

Woo hoo!

哇噢！

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

我要發自肺腑地告訴你們，

thank you so very, very much.

非常非常感謝你們。

Do you know to date the ALS Association

你們知道嗎， 到現在漸凍人協會已經募集到了

has raised 125 million dollars?

一億兩千五百萬美元？

Woo hoo! (Applause)

哇噢 ！（掌聲）

It takes me back to the summer of 2011.

那是在 2011 年夏，

My family, my kids had all grown up.

我們全家，孩子們全都長大成人了。

We were officially empty nesters,

我們夫婦成了標準的空巢老人，

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

我們決定，全家來一次親子遊。

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

珍，我女兒和女婿

came down from New York.

從紐約過來。

My youngest, Andrew,

我的小兒子安德魯

he came down from his home in Charlestown

從他查爾斯頓的家來了。

where he was working in Boston,

他當時在波士頓工作，

and my son Pete,

還有我的另外一個兒子皮特

who had played at Boston College, baseball,

在波士頓學院時是棒球選手，

had played baseball professionally in Europe,

後來在歐洲打職棒，

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

現在回來了， 當時他在賣團體保險，他也來了。

And one night, I found myself

有天晚上，我和皮特

having a beer with Pete,

在喝啤酒聊天，

and Pete was looking at me and he just said,

皮特看著我，然後對我說：

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

「老媽，我有點糾結，

selling group insurance is just not my passion."

我對賣團體保險 根本沒有任何激情。」

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

他說道：「我感覺不到任何成就感，

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

不覺得這是我的人生使命。」

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

他接著說：「還有，老媽，

I have to leave early from vacation

我得提前結束假期，

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

我所在的城際聯盟隊進了季後賽，

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

我要回到波士頓， 我不能讓隊友失望。

I'm just not as passionate about my job

我對工作的熱忱完全

as I am about baseball."

比不上棒球。」

So off Pete went, and left the family vacation —

就這樣，皮特提前走了， 離開了全家人一起的旅行，

break a mother's heart —

讓老媽很是受傷，

and he went, and we followed four days later

他走後四天， 我們也結束假期回來了，

to see the next playoff game.

去看下一次季後賽。

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

我們在季後賽現場觀看， 皮特在本壘，

and a fastball's coming in,

來了一個快球，

and it hits him on the wrist.

擊中了他的手腕。

Oh, Pete.

天啊，皮特！

His wrist went completely limp, like this.

他的手腕完全軟了，就像這樣。

So for the next six months,

接下來的六個月，

Pete went back to his home in Southie,

皮特回到了他在南波士頓的家，

kept working that unpassionate job,

繼續他沒有熱忱的工作，

and was going to doctors

看醫生，

to see what was wrong with this wrist

看看手腕到底是怎麼了，

that never came back.

為什麼總也不好。

Six months later, in March,

六個月後，三月份，

he called my husband and me, and he said,

他打電話給我先生和我，問道，

"Oh, Mom and Dad, we have a doctor

「老媽老爸，現在有個

that found a diagnosis for that wrist.

能診斷我的手腕的醫生。

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

你們願不願意陪我一起去見醫生？」

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

我說：「當然，我們願意。」

That morning, Pete, John and I

那天早上，皮特、約翰和我

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

全都起來了，穿好衣服，上了車——

three separate cars

三輛車，

because we were going to go to work

因為見過醫生， 查清楚手腕到底怎麼了後，

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

我們各自還要去上班。

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

我們走進神經專家的辦公室， 坐了下來，

four doctors walk in,

進來了四個醫生，

and the head neurologist sits down.

首席醫生坐了下來。

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

他說道：「皮特， 我們看了所有的檢查結果，

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

我要告訴你，這不是腕關節扭傷，

it's not a broken wrist,

也不是腕關節骨折，

it's not nerve damage in the wrist,

不是腕關節神經損傷，

it's not an infection,

不是發炎，

it's not Lyme disease."

也不是萊姆病。」

And there was this deliberate elimination going up,

就這樣逐個逐個地排除，

and I was thinking to myself,

我就在想，

where is he going with this?

接下來他要說什麼？

Then he put his hands on his knees,

然後他把自己的雙手放到膝蓋上，

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

雙眼直直地看著我 27 歲的兒子，然後說：

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

「我不知道該怎麼 告訴一個 27 歲年輕人，

Pete, you have ALS."

皮特，這是肌萎縮側索硬化症。」

ALS?

肌萎縮側索硬化症？（漸凍人症）

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

我有個朋友的父親， 80 歲了，就是這病。

I looked at my husband, he looked at me,

我和我先生對視了一下，

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

我們一齊看著醫生， 問道：「漸凍人症？

Okay, what treatment? Let's go.

好吧，怎麼治？我們去治。

What do we do? Let's go."

要做什麼？我們去做。」

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

然後他看著我們，說道： 「弗拉特斯夫婦，

I'm sorry to tell you this,

我非常遺憾地告訴你們，

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

這種病沒法治，治不了。」

We were the worst culprits.

我們簡直蠢到家了。

We didn't even understand

我們甚至根本不知道

that it had been 75 years since Lou Gehrig

自從知名棒球手 盧·賈里格罹患這種病後，

and nothing had been done in the progress against ALS.

75 年來，在對抗漸凍人症方面， 醫學界尚未有任何進展。

So we all went home, and Jenn and Dan

就這樣我們回家了，

flew home from Wall Street,

珍和丹從紐約華爾街飛了回來，

Andrew came home from Charlestown,

安德魯從查爾斯頓回來了，

and Pete went to B.C. to pick up

皮特去了波士頓學院

his then-girlfriend Julie and brought her home,

接他當時還是女朋友的朱莉， 帶她回來，

and six hours later after diagnosis,

診斷結果出來 6 個小時後，

we're sitting around having a family dinner,

我們全家人坐在晚餐餐桌前，

and we're having small chat.

簡單地聊了起來。

I don't even remember cooking dinner that night.

我甚至都不記得那天我做了晚飯。

But then our leader, Pete, set the vision,

然後，我們的領袖皮特， 設定了目標，

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

他說話時的語氣就像 我們是他的新隊友。

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

他說：「各位，不要沮喪。」

He goes, "We're not looking back,

他接著說：「我們不要往後看，

we're looking forward.

我們要往前看。

What an amazing opportunity we have to change the world.

這是多麼絕佳的機會來改變世界 。

I'm going to change the face

我要改變漸凍人症這種目前

of this unacceptable situation of ALS.

讓人無法接受的現狀。

We're going to move the needle,

我們要快速行動起來，

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

我要讓比爾·蓋茨這樣的 慈善家了解到這種疾病。」

And that was it. We were given our directive.

就這樣，我們得到了前進的方向。

So in the days and months that followed,

在接下來的日子裡，

within a week, we had our brothers and sisters

一周之內，我們把兄弟姐妹

and our family come to us,

親朋好友召集到了家裡來，

that they were already creating Team Frate Train.

他們已經著手打造「弗拉特斯應援團」 (Team Frate Train) 專頁。

Uncle Dave, he was the webmaster;

大維叔叔是我們的網路管理員，

Uncle Artie, he was the accountant;

亞提叔叔是會計，

Auntie Dana, she was the graphic artist;

戴娜姑媽是平面設計，

and my youngest son, Andrew,

我的小兒子安德魯

quit his job, left his apartment in Charlestown

辭工，離開他在查爾斯頓的家。

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

他說： 「我來照顧皮特，做他的護士。」

Then all those people, classmates, teammates,

然後所有這些人，同學、隊友，

coworkers that Pete had inspired

皮特長期以來

throughout his whole life,

提攜共事的同事，

the circles of Pete all started intersecting with one another,

皮特的人脈，開始彼此溝通聯絡，

and made Team Frate Train.

最後就有了臉書上的 「弗拉特斯應援團」專頁。

Six months after diagnosis,

診斷結果出來六個月後，

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

皮特在一次研究高峰會上 因倡導此病獲獎。

He got up and gave a very eloquent speech,

他站了出來， 發表了一場動人的演講，

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

演講結束後是討論會，

and on the panel were these pharmaceutical executives

討論會成員是製藥企業的高管、

and biochemists and clinicians

生物化學家和臨床醫生。

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

我就坐在那裡，聽他們在講，

and most of the content went straight over my head.

講的東西我全然不懂。

I avoided every science class I ever could.

我讀書時，科學方面的課程 全沒好好聽講。

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

但是，我就看著這些人， 聽他們在講，

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

他們表示「我做這個，我做那個，」

and there was a real unfamiliarity between them.

他們彼此之間沒有任何默契。

So at the end of their talk, the panel,

在討論會結束後，

they had questions and answers,

是問答環節，

and boom, my hand went right up,

我的手就嗖地舉了起來，

and I get the microphone,

我走到麥克風前，

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

看著他們，我說：「謝謝你們。

Thank you so much for working in ALS.

非常感謝你們在漸凍人方面的工作，

It means so very much to us."

這對我們來說非常重要。」

I said, "But I do have to tell you

我說：「但是，我想告訴你們的是，

that I'm watching your body language

我在觀察你們的肢體語言，

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

我也在聽你們所講的東西。

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

但是看起來似乎是各說各話， 沒有太多的協調和聯合。

And not only that, where's the flip chart

還不止此，怎麼沒有解釋性掛圖

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

寫明要做的事情，後續步驟， 以及各方負責的事項？

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

會議結束後，你們會做些什麼？」

And then I turned around

然後我轉過身來，

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

差不多有 200 雙眼睛 正在注視著我。

And it was that point that I realized

就在那時，我意識到，

that I had talked about the elephant in the room.

我講的這些才是要點， 才是最該做的事。

Thus my mission had begun.

就這樣我的使命開始了。

So over the next couple of years,

接下來的幾年，

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

皮特—我們磕磕絆絆起起落落。

Pete was put on a compassionate use drug.

皮特接受特許藥物的治療。

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

也是所有漸凍人社群的最後希望。

It was in a phase III trial.

這種藥物還在臨床試驗的第三階段。

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

六個月後，數據回來了： 沒有任何療效。

We were supposed to have therapies overseas,

我們還以為會有效果， 繼續去境外接著治療，

and the rug was pulled out from under us.

但是最後的救命稻草也沒有了。

So for the next two years,

接下來的兩年，

we just watched my son be taken away from me,

我們只能眼睜睜看著兒子一天天，

little by little every day.

一點點被病魔拖垮。

Two and a half years ago,

兩年半前，

Pete was hitting home runs at baseball fields.

皮特還在棒球場上打全壘打。

Today, Pete's completely paralyzed.

今天，皮特已經徹底癱瘓了。

He can't hold his head up any longer.

甚至連頭也抬不起來了。

He's confined to a motorized wheelchair.

只能蜷縮在電動輪椅上。

He can no longer swallow or eat.

沒法吞嚥，沒法進食，

He has a feeding tube.

進食需要進食管。

He can't speak.

他也不能說話了。

He talks with eye gaze technology

他需要通過目控技術

and a speech generating device,

和一個語音生成設備來說話，

and we're watching his lungs,

我們在觀察他的肺，

because his diaphragm eventually is going to give out

因為橫膈膜最終會衰竭，

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

到時候我們就得決定 是否給他裝上呼吸器。

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

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。

So July 4th, 2014,

2014 年 7 月 4 日，

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

盧·賈里格發表振奮人心的 演講 75 年後，

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

美國職棒大聯盟邀請皮特 在《看台報告》上撰文。

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

非比尋常，因為文章是皮特 通過目控技術寫出來的。

Twenty days later, the ice started to fall.

20 天後，冰塊開始從冰桶裡面滑落。

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

7 月 27 日，皮特在紐約的室友

wearing a Quinn For The Win shirt,

穿上了「奎恩必勝」的 T 恤，

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

奎因是另一位知名的 紐約漸凍人症病人，

and B.C. shorts

和印有「波士頓學院」的短褲，

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

說道： 「我接受漸凍人症冰桶挑戰，」

picked up the ice, put it over his head.

舉起冰桶，從頭倒下。

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

「我提名...」 他提名了波士頓的人繼續接力。

And that was on July 27th.

那是 7 月 27 日。

Over the next couple of days, our news feed

接下來的幾天，我們的動態消息

was full of family and friends.

全是親朋好友發來的。

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

如果你們還沒有往前翻閱， 臉書有個很棒的功能，

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

你可以選擇日期， 查看當日的內容。

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

一定要看看亞提叔叔的 「血腥瑪麗」冰桶挑戰短片。

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

我告訴你們，非常之棒，

and that was probably in day two.

時間應該就是第二天。

By about day four, Uncle Dave, the webmaster,

第四天左右， 我們的網絡管理員大維叔叔，

he isn't on Facebook,

他還沒有臉書帳號，

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

我收到了他發來的短信， 問道：「南西，

what the hell is going on?"

到底是怎麼回事？」

Uncle Dave gets a hit every time Pete's website

每次有人看皮特的網站，戴維叔叔

is gone onto, and his phone was blowing up.

就會收到信息，他的手機響個不停。

So we all sat down and we realized,

我們全都坐了下來，我們意識到

money is coming in — how amazing.

捐款來了—真是太棒了。

So we knew awareness would lead to funding,

我們知道更多人知道情況後 會給我們捐款，

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

我們只是沒有想到會這麼快， 幾天的時間就開始了。

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

我們把皮特的網站 申請了非營利組織，

and off we went.

然後勇往直前。

So week one, Boston media.

第一周，波士頓媒體開始報導。

Week two, national media.

第二周，全國媒體開始報導。

It was during week two that our neighbor next door

第二周的時候，我們的隔壁鄰居

opened up our door and threw a pizza

叩開我們的門，

across the kitchen floor, saying,

從廚房的門縫裡扔進了一個披薩，

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

說：「我覺得你們應該需要吃的。」

(Laughter)

（笑聲）

Week three, celebrities — Entertainment Tonight,

第三周，各界名流如《今晚娛樂》、

Access Hollywood.

《走進好萊塢》開始報導。

Week four, global — BBC, Irish Radio.

第四周，全球媒體—— 英國廣播公司、愛爾蘭電台。

Did anyone see "Lost In Translation"?

你們有人看過《迷失東京》嗎？

My husband did Japanese television.

我先生接受了日本電視台的採訪。

It was interesting.

非常棒。

(Laughter)

（笑聲）

And those videos, the popular ones.

還有那些短片， 點擊率比較高的一些。

Paul Bissonnette's glacier video, incredible.

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。

How about the redemption nuns of Dublin?

還有都柏林的修女們的冰桶挑戰， 怎麼樣？

Who's seen that one?

有人看到那個了嗎？

It's absolutely fantastic.

絕對超讚。

J.T., Justin Timberlake.

J.T，賈斯汀·提姆布萊克。

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

這個時候，我們知道， A 咖的大明星們上場了。

I go back on my texts, and I can see

我翻看我的短信，看到我妹妹發來

"JT! JT!" My sister texting me.

信息告訴我「賈斯汀！賈斯汀！」

Angela Merkel, the chancellor of Germany.

德國總理安吉拉·默克爾。

Incredible.

不可思議。

And the ALS patients,

漸凍人症患者，還有他們的家人，

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

你們知道他們最喜歡的是哪個嗎？