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Nancy Frates在TED演讲：Meet the mom who started the Ice Bucket Challenge妈妈撞上冰桶

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

大家下午好 你们中有多少人 参加了冰桶挑战？ (掌声) 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)

我在此对你们表达衷心的谢意， 非常感谢你们！谢谢！ 你们知道目前为止渐冻人（ALS）协会 已筹集到1.25亿美元了吗？ 哦耶！（掌声）

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.”

这让我又想起2011年夏天 我的孩子们都已经长大成人 而我们也正式成了空巢老人 于是我们决定操办一场家庭聚会 我的女儿 Jenn 以及我的女婿 从纽约回来 我最小的孩子 Andrew 从查尔斯顿的家中过来 他在波士顿工作 还有我的儿子 Pete 他曾是波士顿学院棒球手 参加过欧洲的职业棒球赛 当时从事卖团体保险的工作， 也加入了我们 有一天晚上 我和Pete喝了一杯 Pete 看着我说： “妈妈，我觉得吧 卖团体保险不是我的热情所在。“ 他说，“我觉得这项工作辜负了我的潜力， 我觉得这不是我的人生使命。“ 他还说：“噢，对了， 妈妈 我得提前离开 因为我效力的队伍打进了季后赛我得回波士顿去， 因为我不能让我的队友失望 我只是对我的工作 没有像对待棒球那样的热情。“

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提前离开了 碎了当妈的心 然后他去了波士顿， 四天以后我们也跟去了 去看即将到来的季后赛 我们在季后赛现场，Pete 在垒上 一个快球过来 打在了他的手腕上 噢，Pete 他的手腕完全瘫软了，就像这样 所以接下来的六个月里 Pete回了他在波士顿南部的家 继续做那份没有热情的工作 并去看医生 检查他的手腕出了什么问题 怎么复原不了

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.

六个月以后，三月里 他打电话给我丈夫和我，说： “爸爸妈妈，有个医生 确诊了手腕的症状。 你们想和我一起见见那个医生吗？“ 我说：“当然，我们就去。” 那天早上 Pete 、John 和我 都早起梳洗，上了车—— 三辆车—— 因为我们打算在见完医生并弄清楚他的手腕状况之后 就直接去上班 我们走进神经科医师的办公室，坐好 四个医生走了进来 领头的医师坐了下来 他说：“Pete，我们看了所有的检测结果， 我不得不告诉你，这不是普通的手腕扭伤， 不是手腕骨折， 不是手腕神经坏死， 不是感染， 也不是莱姆病。“ 医生有意地排除了这么多可能性之后 我在想 他到底想说什么？ 然后他把手放在膝盖上 看着我27岁的孩子，说： “我不知道怎么告诉一个27岁的人这件事： Pete，你得了渐冻人症” 渐冻人症？ 我曾有一个朋友， 他80岁的父亲得了这个病 我看着我丈夫，他也看着我 然后我们看着医生，说：“渐冻人症？ 好吧，有什么治疗方法？ 我们开始治疗吧。 我们能做什么？ 开始做吧。“ 他看着我们，说： “ Frates先生，Frates夫人 我很遗憾地告诉你们 这病没有治疗方法，也不可能治愈。“ 我们是最差劲的父母 我们甚至不能理解 从最初在卢`格里克身上发现这病至今， 已有75年 但是对抗渐冻人症依然进展全无

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.

所以我们都回了家 Jenn和Dan从华尔街飞了回来 Andrew从查尔斯顿赶来 Pete去了波士顿学院 接他当时的女友Julie回了家 在确诊六个小时后 我们坐在一起享用家庭晚餐 进行一些随意的聊天 那天晚上我甚至不记得要煮饭 我们的领袖Pete 设定了愿景 他和我们讲话就像我们是他的新队员一样 他开口道：”我们不能沉湎于此。“ 他接着说：”我们也不能向后看， 而要向前展望。“ 这是多让人惊喜的改变世界的机会啊 我要改变 渐冻人症这无法令人接受的现状 我们要推进治疗渐冻人症的发展 我要将这件事让比尔·盖茨一样的慈善家们知道 就这样 我们有了方向

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.

所以接下来的日子里 我们的兄弟姐妹等家人们 在一周之内齐聚 他们已经创造了Frate训练团队 Dave叔叔 是网络管理人 Artie叔叔 是会计师 Dana姨妈 是设计师 我最小的儿子 Andrew 辞了他的工作，离开了查尔斯顿的住处 他说：”我要照顾Pete，做他的护理师。“ 之后，Pete的同学、队友 还有同事 这些被Pete的经历激励的人们 开始互相交流 组成了Frate团队

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?”

确诊六个月以后 Pete 被某研究峰会授予了一个奖项 他起身做了一个非常棒的演讲 在演讲的最后有一个座谈会 参会人员有医药高管 有生化学家和临床医师 我坐在那 听他们的讲话 大部分内容都左耳进右耳出 我尽可能忽略掉了那些科学课 但我看着这些人 听他们讲话 他们说 “我 我做了这个 我做了那个” 他们之间隔着明显的生疏感 在座谈会的最后 有提问环节 我的手立刻举起来 我拿到了麦克风 我看着他们 我说 “谢谢， 谢谢你们为治愈渐冻人症做的努力 这对我们来说很重要。” 我说 “但是我得告诉你们 我观察了你们的肢体语言 听了你们的讲话 似乎你们之间并没有多少在整体上的合作 不止如此 接下来的行动、追踪、问责，这些都在哪展现了？ 你们离开这以后将会做什么？“

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.

我转过身去 大概有200双眼睛盯着我 那时候我意识到 我说到了禁忌 就这样 我的使命开始了 所以 在接下来的几年里 Pete — 我们有过欢笑也有过泪水 Pete参与了试药 对所有渐冻人而言这药是一线希望 药品已经进入三期临床测试 六个月后 数据反馈回来了：无效 我们本该去海外接受治疗 但如今已为时太晚 所以接下来的两年 我们只能眼睁睁的看着我们的儿子远离我们 一点一点 一天一天 两年半以前 Pete还在棒球场上打全垒打 今天 Pete完全瘫痪了 他不能再抬头 他被限制在机动轮椅上 他不能再吞咽 他有一根进食管 他不能讲话 他用眼睛凝视技术 和演讲发声装置交流 我们很关注他的肺 因为他的膈最终会消失 那时候就得决定要不要为他装换气机 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, 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界卢格里克激励演讲到来 Pete被MLB网站邀请 在Bleacher Report上发表一篇文章 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. 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 冰桶挑战开始 7月27日 Pete在纽约的室友 穿了一件Quinn For The Win衬衫 象征Pat Quinn 另一名纽约知名的渐冻人患者 和波士顿学院的短裤 他说 ”我接受渐冻人冰桶挑战“ 举起冰水倒在自己头上 ”我提名…” 他传到了波士顿 那仅仅是7月27日 接下来的几天里 我们的新闻里 都是家人和朋友 如果你们没有看过也不要紧 因为脸书有个优点 就是有日期标注 你们可以翻回去 你们一定得看看Artie叔叔的表现 我敢保证 那是最精彩的视频之一 那大概是第二天的事 到了第四天 网站管理人Dave叔叔 他没有脸书 我收到一条他的短信 上面写着，“Nancy， 这到底是怎么回事？” 每次有人访问Pete的网站 Dave叔叔会收到提示 他的手机快要爆炸了 我们坐下来意识到 钱来了—— 多难以置信

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.

我们知道到关注能够带来资金 我们只是不知道这只用几天的功夫 我们聚到一起 把最精彩的501(c)(3)视频 放到Pete的网站上 自那之后 第一周 波士顿媒体 第二周 国家媒体 到了第二周 我们隔壁的邻居 打开我们家的门 隔着厨房 扔进来一个披萨 说 ”我觉得你们大概需要吃些东西“ （笑声） 第三周 名星节目—今夜娱乐 直通好莱坞 第四周 全球媒体 — 英国广播公司 和 爱尔兰广播电视局 有人看过“迷失东京”吗？ 我丈夫上了日本的电视节目 很有意思 （笑声） 这些视频 最受欢迎的视频 Paul Bissonnette的冰河视频 难以置信 都柏林修女的视频怎么样？ 谁看了那个？ 绝对精彩 J.T. 贾斯汀·汀布莱克 他是我们知道的真正的甲级名人 我翻看短信 我看到 “JT!JT!”我姐姐的短信 Angela Merkel 来自德国的挑战者 难以置信 对于渐冻人症病人 你们知道他们和他们的家人最喜欢的是哪个吗？ 是所有的 因为这些视频重新定义并捐助了“稀有”疾病 他们看着人们一遍又一遍的说 “渐冻人症 渐冻人症” 这真难以置信

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.”

那些反对者 让我们举几个例子好吗 好了 所以渐冻人症协会 他们认为到年底会收到16亿美元捐款 剑桥的渐冻人治疗研发机构 他们筹集到了三百万美金 猜猜然后怎么了 他们拿到了一个新研发药品的临床试验 曾经是三年期限资助 现在 两个月 两个月之内开始 （掌声） 据YouTube报道 已经有超过150个国家发布了渐冻人症冰桶挑战 脸书上有250万视频 我有幸在上周 拜访了脸书总部 我和他们说：“我知道我是什么感觉 我不能想象你们是什么感觉” 她说： “简直惊呆了”

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)

我们家最喜欢的视频是什么呢 比尔 盖茨的 因为Pete确诊那晚 他说他要让像比尔盖茨一样的慈善家知道渐冻人症 他做到了 第一个目标 完成 现在目标是治疗和治愈 （掌声）

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 在冰桶挑战以后 我们知道这不止是 把一桶冰水浇在头上 我真的希望和你们分享的是 几件我希望你们会记得的事 第一件事是 每天早上当你醒来的时候 你可以选择积极的生活 你们中会有人责怪我吗 如果我只是像个婴儿一样逃避 用裹布蒙住自己的头自欺欺人 不 我不觉得会有人责怪我 但Pete鼓励我们每天早上醒来 并且积极主动地生活 事实上我得寻找支持的团队 因为所有人都在说 在草地上喷洒化学物质 这就是为什么他们得了渐冻人症 我说 “我不这么认为” 我不得不远离消极

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.

第二件我想和你们分享的事 是面对挑战的人 一定得内心坚强 把自己从悲观中解救出来 Pete仍然参加棒球比赛 他仍然和他的队友坐在一起 他把利用重力的进食袋 挂在防护栏 你们会看到孩子们 起身替他挂好 “Pete 这样行么？” “当然” 然后他们把进食管放进他的胃里 因为他想要他们看到渐冻人的真实生活 以及他是怎样永不言弃

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)

第三件我想和你们分享的事 如果你遇到这样的情况 你觉得是如此不能接受 我想你尽可能地深思 找到希望 并追寻希望 （掌声） 谢谢 （掌声）

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 我的演讲超时了 但我还要和你们分享 我儿子送给我的礼物 29年来 我有幸成为 Pete Frates的母亲 Pete Frates一直在激励和领导他自己的生活 他播种善良 也收获了善良 他知道当下活着的意义 多么珍贵的礼物

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.

第二件我儿子送给我的礼物 是他给予我人生的意义 现在我知道为什么而活 我要拯救我的儿子 如果我没能及时救他 我会继续工作 这样其他妈妈 就不会有和我相同的经历

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 我儿子送给我的礼物 像个惊叹号一样 发生在这个奇迹的时刻 2014年的8月 那个在他确诊的夜晚他去接的女孩 现在是他的妻子了 Pete和Julie已经生下我的孙女 Lucy Fitzgerald Frates Lucy Fitzgerald Frates早产了两周 作为惊叹号 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 （掌声） 所以让我和你们分享Pete激励的话语 他对同学、同事和队友说过的话 永远热情 永远真诚 永远勤奋 还有别忘了做个好人

Thank you. (Applause)

谢谢 （掌声）

From www.ted.com