Placeholder Image

字幕列表 影片播放

已審核 字幕已審核
  • Well, good afternoon.

    各位,下午好。

  • 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,

  • Petewe'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 inhow 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, celebritiesEntertainment 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, globalBBC, 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?

  • All of them.

    每個都喜歡,全都喜歡。

  • Because this misunderstood and underfunded "rare" disease,

    因為這一被人誤解, 缺乏科研經費的「罕見」疾病,

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

    現在人們可以坐下來, 看大家一次又一次的提及

  • It was unbelievable.

    漸凍人症,漸凍人症。 太不可思議了。

  • And those naysayers,

    那些對此嗤之以鼻的人,

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

    我們來看幾個統計數字,好嗎?

  • Okay, so the ALS Association,

    先說漸凍人症協會,