Well, good afternoon. How many of you took the ALS Ice Bucket Challenge? (Applause)

大家下午好 你們中有多少人 參加了冰桶挑戰(zhàn)？ (掌聲) 哦耶！

Woo hoo! Well, I have to tell you, from the bottom of our hearts, thank you so very, very much. Do you know to date the ALS Association has raised 125 million dollars? Woo hoo! (Applause)

我在此對你們表達衷心的謝意， 非常感謝你們！謝謝！ 你們知道目前為止?jié)u凍人（ALS）協(xié)會 已籌集到1.25億美元了嗎？ 哦耶！（掌聲）

It takes me back to the summer of 2011. My family, my kids had all grown up. We were officially empty nesters, and we decided, let's go on a family vacation. Jenn, my daughter, and my son-in-law came down from New York. My youngest, Andrew, he came down from his home in Charlestown where he was working in Boston, and my son Pete, who had played at Boston College, baseball, had played baseball professionally in Europe, and had now come home and was selling group insurance, he also joined us. And one night, I found myself having a beer with Pete, and Pete was looking at me and he just said, "You know, Mom, I don't know, selling group insurance is just not my passion." He said, "I just don't feel I'm living up to my potential. I don't feel this is my mission in life." And he said, "You know, oh by the way, Mom, I have to leave early from vacation because my inter-city league team that I play for made the playoffs, and I have to get back to Boston because I can't let my team down. I'm just not as passionate about my job as I am about baseball."

這讓我又想起2011年夏天 我的孩子們都已經(jīng)長大成人 而我們也正式成了空巢老人 于是我們決定操辦一場家庭聚會 我的女兒 Jenn 以及我的女婿 從紐約回來 我最小的孩子 Andrew 從查爾斯頓的家中過來 他在波士頓工作 還有我的兒子 Pete 他曾是波士頓學院棒球手 參加過歐洲的職業(yè)棒球賽 當時從事賣團體保險的工作， 也加入了我們 有一天晚上 我和Pete喝了一杯 Pete 看著我說： “媽媽，我覺得吧 賣團體保險不是我的熱情所在。“ 他說，“我覺得這項工作辜負了我的潛力， 我覺得這不是我的人生使命。“ 他還說：“噢，對了， 媽媽 我得提前離開 因為我效力的隊伍打進了季后賽我得回波士頓去， 因為我不能讓我的隊友失望 我只是對我的工作 沒有像對待棒球那樣的熱情。“

So off Pete went, and left the family vacation — break a mother's heart — and he went, and we followed four days later to see the next playoff game. We're at the playoff game, Pete's at the plate, and a fastball's coming in, and it hits him on the wrist. Oh, Pete. His wrist went completely limp, like this. So for the next six months, Pete went back to his home in Southie, kept working that unpassionate job, and was going to doctors to see what was wrong with this wrist that never came back.

因此Pete提前離開了 碎了當媽的心 然后他去了波士頓， 四天以后我們也跟去了 去看即將到來的季后賽 我們在季后賽現(xiàn)場，Pete 在壘上 一個快球過來 打在了他的手腕上 噢，Pete 他的手腕完全癱軟了，就像這樣 所以接下來的六個月里 Pete回了他在波士頓南部的家 繼續(xù)做那份沒有熱情的工作 并去看醫(yī)生 檢查他的手腕出了什么問題 怎么復原不了

Six months later, in March, he called my husband and me, and he said, "Oh, Mom and Dad, we have a doctor that found a diagnosis for that wrist. Do you want to come with the doctor's appointment with me?" I said, "Sure, we'll come in." That morning, Pete, John and I all got up, got dressed, got in our cars — three separate cars because we were going to go to work after the doctor's appointment to find out what happened to the wrist. We walked into the neurologist's office, sat down, four doctors walk in, and the head neurologist sits down. And he says, "Well, Pete, we've been looking at all the tests, and I have to tell you, it's not a sprained wrist, it's not a broken wrist, it's not nerve damage in the wrist, it's not an infection, it's not Lyme disease." And there was this deliberate elimination going up, and I was thinking to myself, where is he going with this? Then he put his hands on his knees, he looked right at my 27-year-old kid, and said, "I don't know how to tell a 27-year-old this: Pete, you have ALS." ALS? I had had a friend whose 80-year-old father had ALS. I looked at my husband, he looked at me, and then we looked at the doctor, and we said, "ALS? Okay, what treatment? Let's go. What do we do? Let's go." And he looked at us, and he said, "Mr. and Mrs. Frates, I'm sorry to tell you this, but there's no treatment and there's no cure." We were the worst culprits. We didn't even understand that it had been 75 years since Lou Gehrig and nothing had been done in the progress against ALS.

六個月以后，三月里 他打電話給我丈夫和我，說： “爸爸媽媽，有個醫(yī)生 確診了手腕的癥狀。 你們想和我一起見見那個醫(yī)生嗎？“ 我說：“當然，我們就去。” 那天早上 Pete 、John 和我 都早起梳洗，上了車—— 三輛車—— 因為我們打算在見完醫(yī)生并弄清楚他的手腕狀況之后 就直接去上班 我們走進神經(jīng)科醫(yī)師的辦公室，坐好 四個醫(yī)生走了進來 領頭的醫(yī)師坐了下來 他說：“Pete，我們看了所有的檢測結果， 我不得不告訴你，這不是普通的手腕扭傷， 不是手腕骨折， 不是手腕神經(jīng)壞死， 不是感染， 也不是萊姆病。“ 醫(yī)生有意地排除了這么多可能性之后 我在想 他到底想說什么？ 然后他把手放在膝蓋上 看著我27歲的孩子，說： “我不知道怎么告訴一個27歲的人這件事： Pete，你得了漸凍人癥” 漸凍人癥？ 我曾有一個朋友， 他80歲的父親得了這個病 我看著我丈夫，他也看著我 然后我們看著醫(yī)生，說：“漸凍人癥？ 好吧，有什么治療方法？ 我們開始治療吧。 我們能做什么？ 開始做吧。“ 他看著我們，說： “ Frates先生，F(xiàn)rates夫人 我很遺憾地告訴你們 這病沒有治療方法，也不可能治愈。“ 我們是最差勁的父母 我們甚至不能理解 從最初在盧`格里克身上發(fā)現(xiàn)這病至今， 已有75年 但是對抗?jié)u凍人癥依然進展全無

So we all went home, and Jenn and Dan flew home from Wall Street, Andrew came home from Charlestown, and Pete went to B.C. to pick up his then-girlfriend Julie and brought her home, and six hours later after diagnosis, we're sitting around having a family dinner, and we're having small chat. I don't even remember cooking dinner that night. But then our leader, Pete, set the vision, and talked to us just like we were his new team. He said, "There will be no wallowing, people." He goes, "We're not looking back, we're looking forward. What an amazing opportunity we have to change the world. I'm going to change the face of this unacceptable situation of ALS. We're going to move the needle, and I'm going to get it in front of philanthropists like Bill Gates." And that was it. We were given our directive.

所以我們都回了家 Jenn和Dan從華爾街飛了回來 Andrew從查爾斯頓趕來 Pete去了波士頓學院 接他當時的女友Julie回了家 在確診六個小時后 我們坐在一起享用家庭晚餐 進行一些隨意的聊天 那天晚上我甚至不記得要煮飯 我們的領袖Pete 設定了愿景 他和我們講話就像我們是他的新隊員一樣 他開口道：”我們不能沉湎于此。“ 他接著說：”我們也不能向后看， 而要向前展望。“ 這是多讓人驚喜的改變世界的機會啊 我要改變 漸凍人癥這無法令人接受的現(xiàn)狀 我們要推進治療漸凍人癥的發(fā)展 我要將這件事讓比爾·蓋茨一樣的慈善家們知道 就這樣 我們有了方向

So in the days and months that followed, within a week, we had our brothers and sisters and our family come to us, that they were already creating Team Frate Train. Uncle Dave, he was the webmaster; Uncle Artie, he was the accountant; Auntie Dana, she was the graphic artist; and my youngest son, Andrew, quit his job, left his apartment in Charlestown and says, "I'm going to take care of Pete and be his caregiver." Then all those people, classmates, teammates, coworkers that Pete had inspired throughout his whole life, the circles of Pete all started intersecting with one another, and made Team Frate Train.

所以接下來的日子里 我們的兄弟姐妹等家人們 在一周之內(nèi)齊聚 他們已經(jīng)創(chuàng)造了Frate訓練團隊 Dave叔叔 是網(wǎng)絡管理人 Artie叔叔 是會計師 Dana姨媽 是設計師 我最小的兒子 Andrew 辭了他的工作，離開了查爾斯頓的住處 他說：”我要照顧Pete，做他的護理師。“ 之后，Pete的同學、隊友 還有同事 這些被Pete的經(jīng)歷激勵的人們 開始互相交流 組成了Frate團隊

Six months after diagnosis, Pete was given an award at a research summit for advocacy. He got up and gave a very eloquent speech, and at the end of the speech, there was a panel, and on the panel were these pharmaceutical executives and biochemists and clinicians and I'm sitting there and I'm listening to them and most of the content went straight over my head. I avoided every science class I ever could. But I was watching these people, and I was listening to them, and they were saying, "I, I do this, I do that," and there was a real unfamiliarity between them. So at the end of their talk, the panel, they had questions and answers, and boom, my hand went right up, and I get the microphone, and I look at them and I say, "Thank you. Thank you so much for working in ALS. It means so very much to us." I said, "But I do have to tell you that I'm watching your body language and I'm listening to what you're saying. It just doesn't seem like there's a whole lot of collaboration going on here. And not only that, where's the flip chart with the action items and the follow-up and the accountability? What are you going to do after you leave this room?"

確診六個月以后 Pete 被某研究峰會授予了一個獎項 他起身做了一個非常棒的演講 在演講的最后有一個座談會 參會人員有醫(yī)藥高管 有生化學家和臨床醫(yī)師 我坐在那 聽他們的講話 大部分內(nèi)容都左耳進右耳出 我盡可能忽略掉了那些科學課 但我看著這些人 聽他們講話 他們說 “我 我做了這個 我做了那個” 他們之間隔著明顯的生疏感 在座談會的最后 有提問環(huán)節(jié) 我的手立刻舉起來 我拿到了麥克風 我看著他們 我說 “謝謝， 謝謝你們?yōu)橹斡鷿u凍人癥做的努力 這對我們來說很重要。” 我說 “但是我得告訴你們 我觀察了你們的肢體語言 聽了你們的講話 似乎你們之間并沒有多少在整體上的合作 不止如此 接下來的行動、追蹤、問責，這些都在哪展現(xiàn)了？ 你們離開這以后將會做什么？“

And then I turned around and there was about 200 pairs of eyes just staring at me. And it was that point that I realized that I had talked about the elephant in the room. Thus my mission had begun. So over the next couple of years, Pete — we've had our highs and our lows. Pete was put on a compassionate use drug. It was hope in a bottle for the whole ALS community. It was in a phase III trial. Then six months later, the data comes back: no efficacy. We were supposed to have therapies overseas, and the rug was pulled out from under us. So for the next two years, we just watched my son be taken away from me, little by little every day. Two and a half years ago, Pete was hitting home runs at baseball fields. Today, Pete's completely paralyzed. He can't hold his head up any longer. He's confined to a motorized wheelchair. He can no longer swallow or eat. He has a feeding tube. He can't speak. He talks with eye gaze technology and a speech generating device, and we're watching his lungs, because his diaphragm eventually is going to give out and then the decision will be made to put him on a ventilator or not. ALS robs the human of all their physical parts, but the brain stays intact.

我轉過身去 大概有200雙眼睛盯著我 那時候我意識到 我說到了禁忌 就這樣 我的使命開始了 所以 在接下來的幾年里 Pete — 我們有過歡笑也有過淚水 Pete參與了試藥 對所有漸凍人而言這藥是一線希望 藥品已經(jīng)進入三期臨床測試 六個月后 數(shù)據(jù)反饋回來了：無效 我們本該去海外接受治療 但如今已為時太晚 所以接下來的兩年 我們只能眼睜睜的看著我們的兒子遠離我們 一點一點 一天一天 兩年半以前 Pete還在棒球場上打全壘打 今天 Pete完全癱瘓了 他不能再抬頭 他被限制在機動輪椅上 他不能再吞咽 他有一根進食管 他不能講話 他用眼睛凝視技術 和演講發(fā)聲裝置交流 我們很關注他的肺 因為他的膈最終會消失 那時候就得決定要不要為他裝換氣機 漸凍人癥奪走了人所有的器官 但大腦卻是完好的

So July 4th, 2014, 75th year of Lou Gehrig's inspirational speech comes, and Pete is asked by MLB.com to write an article in the Bleacher Report. And it was very significant, because he wrote it using his eye gaze technology.

2014年7月4日 第75界盧格里克激勵演講到來 Pete被MLB網(wǎng)站邀請 在Bleacher Report上發(fā)表一篇文章 這意義非常重大 因為這篇文章是他用眼睛凝視技術寫的

Twenty days later, the ice started to fall. On July 27th, Pete's roommate in New York City, wearing a Quinn For The Win shirt, signifying Pat Quinn, another ALS patient known in New York, and B.C. shorts said, "I'm taking the ALS Ice Bucket Challenge," picked up the ice, put it over his head. "And I'm nominating ..." And he sent it up to Boston. And that was on July 27th. Over the next couple of days, our news feed was full of family and friends. If you haven't gone back, the nice thing about Facebook is that you have the dates, you can go back. You've got to see Uncle Artie's human Bloody Mary. I'm telling you, it's one of the best ones, and that was probably in day two. By about day four, Uncle Dave, the webmaster, he isn't on Facebook, and I get a text from him, and it says, "Nancy, what the hell is going on?" Uncle Dave gets a hit every time Pete's website is gone onto, and his phone was blowing up. So we all sat down and we realized, money is coming in — how amazing.

二十天后 冰桶挑戰(zhàn)開始 7月27日 Pete在紐約的室友 穿了一件Quinn For The Win襯衫 象征Pat Quinn 另一名紐約知名的漸凍人患者 和波士頓學院的短褲 他說 ”我接受漸凍人冰桶挑戰(zhàn)“ 舉起冰水倒在自己頭上 ”我提名..." 他傳到了波士頓 那僅僅是7月27日 接下來的幾天里 我們的新聞里 都是家人和朋友 如果你們沒有看過也不要緊 因為臉書有個優(yōu)點 就是有日期標注 你們可以翻回去 你們一定得看看Artie叔叔的表現(xiàn) 我敢保證 那是最精彩的之一 那大概是第二天的事 到了第四天 網(wǎng)站管理人Dave叔叔 他沒有臉書 我收到一條他的短信 上面寫著，“Nancy， 這到底是怎么回事？” 每次有人訪問Pete的網(wǎng)站 Dave叔叔會收到提示 他的手機快要爆炸了 我們坐下來意識到 錢來了—— 多難以置信

So we knew awareness would lead to funding, we just didn't know it would only take a couple of days. So we got together, put our best 501(c)(3)s on Pete's website, and off we went. So week one, Boston media. Week two, national media. It was during week two that our neighbor next door opened up our door and threw a pizza across the kitchen floor, saying, "I think you people might need food in there." (Laughter) Week three, celebrities — Entertainment Tonight, Access Hollywood. Week four, global — BBC, Irish Radio. Did anyone see "Lost In Translation"? My husband did Japanese television. It was interesting. (Laughter) And those videos, the popular ones. Paul Bissonnette's glacier video, incredible. How about the redemption nuns of Dublin? Who's seen that one? It's absolutely fantastic. J.T., Justin Timberlake. That's when we knew, that was a real A-list celebrity. I go back on my texts, and I can see "JT! JT!" My sister texting me. Angela Merkel, the chancellor of Germany. Incredible. And the ALS patients, you know what their favorite ones are, and their families'? All of them. Because this misunderstood and underfunded "rare" disease, they just sat and watched people saying it over and over: "ALS, ALS." It was unbelievable.

我們知道到關注能夠帶來資金 我們只是不知道這只用幾天的功夫 我們聚到一起 把最精彩的501(c)(3) 放到Pete的網(wǎng)站上 自那之后 第一周 波士頓媒體 第二周 國家媒體 到了第二周 我們隔壁的鄰居 打開我們家的門 隔著廚房 扔進來一個披薩 說 ”我覺得你們大概需要吃些東西“ （笑聲） 第三周 名星節(jié)目—今夜娛樂 直通好萊塢 第四周 全球媒體 — 英國廣播公司 和 愛爾蘭廣播電視局 有人看過“迷失東京”嗎？ 我丈夫上了日本的電視節(jié)目 很有意思 （笑聲） 這些 最受歡迎的 Paul Bissonnette的冰河 難以置信 都柏林修女的怎么樣？ 誰看了那個？ 絕對精彩 J.T. 賈斯汀·汀布萊克 他是我們知道的真正的甲級名人 我翻看短信 我看到 “JT!JT!”我姐姐的短信 Angela Merkel 來自德國的挑戰(zhàn)者 難以置信 對于漸凍人癥病人 你們知道他們和他們的家人最喜歡的是哪個嗎？ 是所有的 因為這些重新定義并捐助了“稀有”疾病 他們看著人們一遍又一遍的說 “漸凍人癥 漸凍人癥” 這真難以置信

And those naysayers, let's just talk a couple of stats, shall we? Okay, so the ALS Association, they think by year end, it'll be 160 million dollars. ALS TDI in Cambridge, they raised three million dollars. Well, guess what? They had a clinical trial for a drug that they've been developing. It was on a three-year track for funding. Two months. It's coming out starting in two months. (Applause) And YouTube has reported that over 150 countries have posted Ice Bucket Challenges for ALS. And Facebook, 2.5 million videos, and I had the awesome adventure visiting the Facebook campus last week, and I said to them, "I know what it was like in my house. I can't imagine what it was like around here." All she said was, "Jaw-dropping."

那些反對者 讓我們舉幾個例子好嗎 好了 所以漸凍人癥協(xié)會 他們認為到年底會收到16億美元捐款 劍橋的漸凍人治療研發(fā)機構 他們籌集到了三百萬美金 猜猜然后怎么了 他們拿到了一個新研發(fā)藥品的臨床試驗 曾經(jīng)是三年期限資助 現(xiàn)在 兩個月 兩個月之內(nèi)開始 （掌聲） 據(jù)YouTube報道 已經(jīng)有超過150個國家發(fā)布了漸凍人癥冰桶挑戰(zhàn) 臉書上有250萬 我有幸在上周 拜訪了臉書總部 我和他們說：“我知道我是什么感覺 我不能想象你們是什么感覺” 她說： “簡直驚呆了”

And my family's favorite video? Bill Gates. Because the night Pete was diagnosed, he told us that he was going to get ALS in front of philanthropists like Bill Gates, and he did it. Goal number one, check. Now on to the treatment and cure. (Applause)

我們家最喜歡的是什么呢 比爾 蓋茨的 因為Pete確診那晚 他說他要讓像比爾蓋茨一樣的慈善家知道漸凍人癥 他做到了 第一個目標 完成 現(xiàn)在目標是治療和治愈 （掌聲）

So okay, after all of this ice, we know that it was much more than just pouring buckets of ice water over your head, and I really would like to leave you with a couple of things that I'd like you to remember. The first thing is, every morning when you wake up, you can choose to live your day in positivity. Would any of you blame me if I just was in the fetal position and pulled the covers over my head every day? No, I don't think anybody would blame me, but Pete has inspired us to wake up every morning and be positive and proactive. I actually had to ditch support groups because everybody was in there saying that spraying their lawns with chemicals, that's why they got ALS, and I was like, "I don't think so," but I had to get away from the negativity.

好了 在冰桶挑戰(zhàn)以后 我們知道這不止是 把一桶冰水澆在頭上 我真的希望和你們分享的是 幾件我希望你們會記得的事 第一件事是 每天早上當你醒來的時候 你可以選擇積極的生活 你們中會有人責怪我嗎 如果我只是像個嬰兒一樣逃避 用裹布蒙住自己的頭自欺欺人 不 我不覺得會有人責怪我 但Pete鼓勵我們每天早上醒來 并且積極主動地生活 事實上我得尋找支持的團隊 因為所有人都在說 在草地上噴灑化學物質 這就是為什么他們得了漸凍人癥 我說 “我不這么認為” 我不得不遠離消極

The second thing I want to leave you with is the person at the middle of the challenge has to be willing to have the mental toughness to put themselves out there. Pete still goes to baseball games and he still sits with his teammates in the dugout, and he hangs his gravity feed bag right on the cages. You'll see the kids, they're up there hanging it up. "Pete, is that okay?" "Yup." And then they put it right into his stomach. Because he wants them to see what the reality of this is, and how he's never, ever going to give up.

第二件我想和你們分享的事 是面對挑戰(zhàn)的人 一定得內(nèi)心堅強 把自己從悲觀中解救出來 Pete仍然參加棒球比賽 他仍然和他的隊友坐在一起 他把利用重力的進食袋 掛在防護欄 你們會看到孩子們 起身替他掛好 “Pete 這樣行么？” “當然” 然后他們把進食管放進他的胃里 因為他想要他們看到漸凍人的真實生活 以及他是怎樣永不言棄

And the third thing I want to leave you with: If you ever come across a situation that you see as so unacceptable, I want you to dig down as deep as you can and find your best mother bear and go after it. (Applause) Thank you. (Applause)

第三件我想和你們分享的事 如果你遇到這樣的情況 你覺得是如此不能接受 我想你盡可能地深思 找到希望 并追尋希望 （掌聲） 謝謝 （掌聲）

I know that I'm running over, but I've got to leave you with this: the gifts that my son has given me. I have had 29 years of having the honor of being the mother of Pete Frates. Pete Frates has been inspiring and leading his whole life. He's thrown out kindness, and all that kindness has come back to him. He walks the face of the Earth right now and knows why he's here. What a gift.

我知道 我的演講超時了 但我還要和你們分享 我兒子送給我的禮物 29年來 我有幸成為 Pete Frates的母親 Pete Frates一直在激勵和領導他自己的生活 他播種善良 也收獲了善良 他知道當下活著的意義 多么珍貴的禮物

The second thing that my son has given me is he's given me my mission in life. Now I know why I'm here. I'm going to save my son, and if it doesn't happen in time for him, I'm going to work so that no other mother has to go through what I'm going through.

第二件我兒子送給我的禮物 是他給予我人生的意義 現(xiàn)在我知道為什么而活 我要拯救我的兒子 如果我沒能及時救他 我會繼續(xù)工作 這樣其他媽媽 就不會有和我相同的經(jīng)歷

And the third thing, and last but not least gift that my son has given me, as an exclamation point to the miraculous month of August 2014: That girlfriend that he went to get on the night of diagnosis is now his wife, and Pete and Julie have given me my granddaughter, Lucy Fitzgerald Frates. Lucy Fitzgerald Frates came two weeks early as the exclamation point on August 31st, 2014.

第三件事，最后一件但并非不重要的事是 我兒子送給我的禮物 像個驚嘆號一樣 發(fā)生在這個奇跡的時刻 2014年的8月 那個在他確診的夜晚他去接的女孩 現(xiàn)在是他的妻子了 Pete和Julie已經(jīng)生下我的孫女 Lucy Fitzgerald Frates Lucy Fitzgerald Frates早產(chǎn)了兩周 作為驚嘆號 在2014年8月31日出生

And so — (Applause) — And so let me leave you with Pete's words of inspiration that he would use to classmates, coworkers and teammates. Be passionate. Be genuine. Be hardworking. And don't forget to be great.

所以 （掌聲） 所以讓我和你們分享Pete激勵的話語 他對同學、同事和隊友說過的話 永遠熱情 永遠真誠 永遠勤奮 還有別忘了做個好人

Thank you. (Applause)

謝謝 （掌聲）

From www.ted.com

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