TEDMED 2016
Sharon Terry: Science didn't understand my kids' rare disease until I decided to study it
莎朗．泰瑞: 科學界不了解我孩子的罕見疾病，直到我決定開始研究它。
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Readability: 4.2
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莎朗．泰瑞是一位前大學牧師兼家庭主婦，當她的兩個孩子被診斷出彈性纖維性假黃瘤（PXE）這個罕見疾病時，她開始了醫學的研究。 泰瑞在這場非常吸引人的演講中，解釋了她和她的丈夫是如何成為素人科學家，並與我們分享為了找出 PXE 背後的基因，在實驗室夜以繼日不停工作的故事，並呼籲科學界的研究人員應該要分享生物樣本並共同合作。
Sharon Terry - Citizen biomedical researcher
Sharon Terry is developing ways for ordinary people to transform biomedical research and healthcare. Full bio
Sharon Terry is developing ways for ordinary people to transform biomedical research and healthcare. Full bio
Double-click the English transcript below to play the video.
00:12
The best Christmas my children ever had
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我家小孩這輩子最開心的聖誕節，
00:15
was also the worst Christmas
my husband and I ever had.
my husband and I ever had.
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卻是我和我先生
這輩子最難過的聖誕節。
這輩子最難過的聖誕節。
00:19
Elizabeth, age seven,
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七歲的伊莉莎白，
00:21
and her brother, Ian, age five,
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還有她五歲的弟弟，伊恩，
00:24
couldn't imagine why they were getting
everything they wanted for Christmas.
everything they wanted for Christmas.
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他們簡直不敢置信，為什麼可以在
聖誕節得到他們想要的一切。
聖誕節得到他們想要的一切。
00:29
The reason Santa was so generous
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聖誕老公公如此慷慨的原因，
00:32
was because of something
my husband Pat and I knew
my husband Pat and I knew
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是因為我的先生派德
和我能明白的東西，
和我能明白的東西，
00:36
and the kids couldn't comprehend.
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孩子們並不能理解。
00:38
Something that we had just learned,
and it terrified us.
and it terrified us.
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這東西我們才弄清楚
就嚇壞了我們。
就嚇壞了我們。
00:43
This was 1994
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1994 年，
00:45
and the story actually starts
a few years earlier.
a few years earlier.
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事實上故事要從更早幾年說起。
00:48
For a couple of years I had noticed
a rash on the sides of Elizabeth's neck
a rash on the sides of Elizabeth's neck
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那幾年，我注意到
伊莉莎白脖子邊上的皮疹，
伊莉莎白脖子邊上的皮疹，
00:54
that looked like prickly heat.
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看起來像是痱子。
00:56
For those same years,
my father and brother both died of cancer,
my father and brother both died of cancer,
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同樣在那幾年，我父親與哥哥
兩個都因為癌症過世，
兩個都因為癌症過世，
01:01
and I was probably
overanxious about illness.
overanxious about illness.
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我當時可能對疾病反應過度了。
01:05
The doctors assured us
there was nothing wrong
there was nothing wrong
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醫生向我們保證絕對沒事，
01:07
and I shouldn't worry,
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叫我不要擔心。
01:09
but I wasn't so sure.
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但我還是不放心。
01:12
And so without a referral,
and paying out-of-pocket,
and paying out-of-pocket,
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在沒有醫師轉診
並完全自費的情況下，
並完全自費的情況下，
01:15
I took Elizabeth to a dermatologist.
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我帶伊莉莎白去找一位皮膚科專家。
01:18
She was probably
just allergic to something,
just allergic to something,
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她可能只是對某樣東西過敏，
01:20
but why did it appear
just on the sides of her neck, this rash?
just on the sides of her neck, this rash?
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但皮疹為什麼只出現在
她的脖子邊上？
她的脖子邊上？
01:26
So it's two days before Christmas,
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在聖誕節前二天，
01:28
1994,
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1994 年，
01:31
and the dermatologist
takes a quick look at her neck and says,
takes a quick look at her neck and says,
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皮膚科專家看了一下
她的脖子便說道：
她的脖子便說道：
01:34
"She has pseudoxanthoma elasticum."
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「她患有彈性纖維性假黃瘤。」
01:37
And then he shuts off the lights
and looks in her eyes.
and looks in her eyes.
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然後他關起燈來，看著她的眼睛。
01:42
It turns out, by chance,
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原來，很剛好，
01:44
this dermatologist
also trained in ophthalmology.
also trained in ophthalmology.
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這位皮膚科醫師也曾學過眼科學。
01:48
Our lucky day.
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我們真幸運。
01:51
I am sick to my stomach.
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我的胃開始不舒服。
01:53
"Oma?"
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是「瘤」嗎？
01:54
Oma's like melanoma, lymphoma --
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就像是黑色素瘤、
淋巴瘤那樣的癌症嗎？
01:57
cancer.
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01:59
"Why are you looking
in her eyes for a skin rash?"
in her eyes for a skin rash?"
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「為什麼皮膚疹要看眼睛？」
02:03
I scream and make no sound.
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我心中無聲地吶喊著。
02:06
So there it is.
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果然，
02:08
Elizabeth has pseudoxanthoma elasticum,
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伊莉莎白得的是彈性纖維性假黃瘤，
02:13
PXE for short.
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簡稱「PXE」。
02:16
Questions mix with fear
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我心中充滿了恐懼與疑惑，
02:19
and erupt like bile in my throat.
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喉嚨像是有膽汁要噴出來一樣。
02:21
Why are you looking in her eyes?
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你為什麼要看她的眼睛？
02:24
What do you know about this?
How do you know for sure?
How do you know for sure?
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你對此了解嗎？你怎麼那麼確定？
02:27
What is the prognosis?
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預後是什麼？
02:30
My training in pastoral counseling
did not prepare me for this.
did not prepare me for this.
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我在教牧輔導的訓練
可沒有學到這個。
可沒有學到這個。
02:35
Dr. Bercovitch tells us
everything he knows about PXE.
everything he knows about PXE.
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柏克維奇醫生告訴了我
他對 PXE 所知道的一切。
他對 PXE 所知道的一切。
02:40
It's a rare genetic disorder,
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這是一種罕見的遺傳性疾病，
02:43
it's systemic,
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它會全身發病，
02:46
it's a slowly progressing,
premature aging disease.
premature aging disease.
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是種病程緩慢的早衰症。
02:50
It causes loose wrinkly skin
in the flexor areas.
in the flexor areas.
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它會使屈肌區的皮膚鬆弛。
02:55
It causes legal blindness,
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還會導致失明，
02:57
like macular degeneration,
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像是黃斑病變，
02:59
and a host of cardiovascular problems.
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甚至會造成心血管疾病。
03:03
Little is known about this disease,
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人們對此疾病所知甚少，
03:06
and some people die in their 30s,
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有些病人會在 30 多歲就死亡，
03:09
say some of the reports at the time.
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有些報告是這麼說的。
03:13
He then just glances at our son and says,
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然後醫生看了一下我兒子又說：
03:18
"He has it, too."
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「他也有。」
03:21
We want to flee
back to the land of normal.
back to the land of normal.
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我們想回到以前正常的日子。
03:30
Two days after Christmas,
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聖誕節後第二天，
03:32
researchers come
from a university in Boston,
from a university in Boston,
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來自波士頓一所大學的研究人員，
03:35
and they take blood
from us and our children
from us and our children
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為了尋找該基因的研究專案，
03:37
for a research project
focused on finding the gene.
focused on finding the gene.
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從我們和孩子身上取走了血樣。
03:41
A few days later,
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幾天後，
03:42
researchers come
from a medical center in New York
from a medical center in New York
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紐約一所醫學中心的
研究人員也來了，
研究人員也來了，
03:45
and say they want blood, too.
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說他們也想要血樣。
03:47
"These are children.
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「他們只是小孩子啊！
03:49
They're five and seven years old.
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一個五歲、一個七歲。
03:51
Don't make them face the needle twice.
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請不要讓他們再一次面對針頭。
03:54
Go and get your share
from the other researchers."
from the other researchers."
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請你們離開去找
其他研究者與你們分享。」
其他研究者與你們分享。」
03:58
They laugh, incredulous.
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他們簡直不敢相信地笑著，
04:00
"Share?"
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「分享？」
04:03
It is then that we learn that there
is little sharing in biomedical research.
is little sharing in biomedical research.
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後來我們才知道，
原來生物醫學界領域，
彼此是很少分享的。
彼此是很少分享的。
04:08
This moment, more than any other,
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當下，就在那刻，
04:11
lit a fire beneath my husband Pat and me.
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我先生派德和我就火大了。
04:15
Pat and I went to a medical school library
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我們去了一家醫學院的圖書館，
04:17
and we copied every article
we could find on PXE.
we could find on PXE.
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影印了每篇我們所找到的
有關 PXE 的文章。
有關 PXE 的文章。
04:21
We didn't understand a thing.
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我們根本一點都不懂。
04:24
We bought medical dictionaries
and scientific textbooks
and scientific textbooks
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我們買了醫藥字典和科學教科書，
04:27
and read everything
we could get our hands on.
we could get our hands on.
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閱讀我們手邊所有的資料。
04:30
And though we still didn't understand,
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雖然我們仍然不懂，
04:32
we could see patterns,
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但我們可以看圖，
04:34
and it became quickly
apparent within a month
apparent within a month
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一個月後我們很快就了解
04:37
that there was no systematic effort
to understand PXE.
to understand PXE.
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這個疾病缺乏系統性的研究。
04:43
In addition,
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另外，
04:44
the lack of sharing
that we experienced was pervasive.
that we experienced was pervasive.
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不願分享的情形到處可見。
04:48
Researchers competed with each other
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研究人員之間是相互競爭的，
04:51
because the ecosystem
was designed to reward competition
was designed to reward competition
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因為大環境的設計鼓勵他們競爭，
04:56
rather than to alleviate suffering.
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而非減緩痛苦。
04:59
We realized that we would have to do
work on this condition ourselves
work on this condition ourselves
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我們認知到我們得在這樣的環境下
工作並尋找解決方法，
工作並尋找解決方法，
05:04
to find solutions
for ourselves and others like us.
for ourselves and others like us.
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不僅為了我們，
更為了像我們一樣的其他人。
更為了像我們一樣的其他人。
05:09
But we faced two major barriers.
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但我們遇到了兩大難題。
05:11
The first one:
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第一：
05:13
Pat and I have no science background.
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派德和我都沒有科學的背景。
05:16
At the time, he's the manager
of a construction company,
of a construction company,
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當時，他只是一家建築公司的經理，
05:20
and I'm a former college chaplain
stay-at-home mom --
stay-at-home mom --
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而我以前是一位
大學牧師兼家庭主婦，
大學牧師兼家庭主婦，
05:24
hardly the backgrounds
to take the research world by storm.
to take the research world by storm.
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根本沒有足夠的背景
來快速了解科學研究。
來快速了解科學研究。
05:29
The second barrier:
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第二個難題就是：
05:32
researchers don't share.
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研究人員根本不願意分享。
05:35
People told us you can't herd cats.
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大家都說，你無法讓
一群貓聽你的話。
一群貓聽你的話。
05:38
Well, yes you can if you move their food.
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其實，你可以的，
只要你移動牠們的食物。
只要你移動牠們的食物。
05:42
(Laughter)
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（笑聲）
05:45
(Applause)
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（掌聲）
05:49
DNA and clinical data is the food.
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DNA 及臨床資料就是他們的食物。
05:52
So we would collect blood
and medical histories,
and medical histories,
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所以，我們收集了血樣及用藥歷史，
05:56
and require that all scientists
using these resources
using these resources
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並要求所有使用這些資源的科學家，
05:59
would share results with each other
and with the people who donated.
and with the people who donated.
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要彼此分享研究成果，
還要分享給捐贈人。
還要分享給捐贈人。
06:05
Well before the internet
was in common use,
was in common use,
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在網路尚未被廣泛使用時，
06:07
Pat and I established PXE International,
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派德和我建立了「PXE 國際組織」，
06:10
a nonprofit dedicated to initiating
research and conducting it on PXE
research and conducting it on PXE
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它是一個致力於開展和引導
PXE 研究的非營利組織，
PXE 研究的非營利組織，
06:15
and also supporting
individuals with the disease.
individuals with the disease.
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並為患有該疾病的人提供支持。
06:19
Using traditional media,
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透過傳統媒介，
06:21
we garnered around
100-150 people around the world
100-150 people around the world
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我們收集了全球大約
100 到 150 個人的資料，
100 到 150 個人的資料，
06:25
who we asked,
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我們會問他們，
06:26
would you give us your blood,
your tissue, your medical histories,
your tissue, your medical histories,
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你願意給我們你的
血樣、組織樣本、用藥紀錄
血樣、組織樣本、用藥紀錄
06:30
your medical records?
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和病歷嗎？
06:32
And we brought all of that together.
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然後我們把這些資料整理起來。
06:34
We quickly learned that this shared
resource was not going to be enough.
resource was not going to be enough.
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我們很快了解到
這樣的資源分享是遠遠不夠的。
這樣的資源分享是遠遠不夠的。
06:39
And so we decided we had
to do hardcore bench science --
to do hardcore bench science --
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因此我們決定去實驗室做——
06:45
hardcore research.
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紮實的基礎研究。
06:47
So we borrowed bench space
at a lab at Harvard.
at a lab at Harvard.
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所以我們在哈佛大學
借了一個工作台，
借了一個工作台，
06:50
A wonderful neighbor
came a couple times a week
came a couple times a week
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有一個很好心的鄰居一周會來幾次，
06:53
and sat with the kids from 8pm to 2am
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從晚上八點到凌晨兩點陪伴孩子們，
06:57
while Pat and I extracted DNA,
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讓派德和我可以安心地抽取 DNA、
06:59
ran and scored gels
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跑凝膠、
07:01
and searched for the gene.
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尋找基因。
07:03
Generous postdocs
tutored us as we went along.
tutored us as we went along.
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另外有一些慷慨的
博士後人員在指導我們。
博士後人員在指導我們。
07:06
Within a few years, we found the gene.
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不過幾年，我們就找到了基因。
07:09
We patented it so that
it would be freely available.
it would be freely available.
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我們取得了專利以便免費使用。
07:12
We created a diagnostic test.
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我們建立了一個診斷的測試方法，
07:14
We put together a research consortium.
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我們組織了一個研究聯盟，
07:17
We held research meetings
and opened a center of excellence.
and opened a center of excellence.
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我們舉辦研討會並建立了卓越中心。
07:21
We found more than 4,000 people
around the world who had PXE,
around the world who had PXE,
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我們發現，全球有超過
4000 人患有 PXE，
4000 人患有 PXE，
07:26
and held patient meetings
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所以我們舉行了一場
病患交流會
病患交流會
07:28
and did clinical trials and studies.
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並做了臨床試驗和研究。
07:32
Through all this,
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整個過程裡，
07:34
we lived with fear.
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我們一直很害怕。
07:37
Fear of the disease
breathing down our neck
breathing down our neck
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我們很害怕這個疾病緊迫盯人，
時間不夠用，
07:41
while the clock ticked.
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07:43
Fear of researchers,
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害怕那些
07:46
so well credentialed and positioned
in a world made for them.
in a world made for them.
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在全世界有良好信譽和
地位的研究專家。
地位的研究專家。
07:50
Fear that we were making
the wrong choices.
the wrong choices.
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害怕我們做出了錯誤的選擇。
07:54
Fear that the naysayers were right
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害怕那些唱反調的人是對的，
07:56
and the cats would simply find a new food.
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害怕貓能輕鬆地找到新食物。
08:00
But greater than all these fears
was our drive to make a difference
was our drive to make a difference
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但比起這些害怕，更偉大的事是：
08:04
for our kids and for all those
we had met along the way.
we had met along the way.
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我們要為孩子與
一路上遇到的人做出改變。
一路上遇到的人做出改變。
08:08
And very quickly,
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很快地，
08:09
we also realized what we
were doing for one disease,
were doing for one disease,
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我們意識到了
我們只是在研究一種疾病，
我們只是在研究一種疾病，
08:12
we should do for all diseases.
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我們應該為所有人研究所有的疾病。
08:16
We joined with, and I eventually led,
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我們加入並之後帶領了
08:18
Genetic Alliance --
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「基因聯盟」──
08:19
a network of health advocacy,
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這是一個推廣健康、
08:21
patient advocacy,
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病患權益的
08:22
research and health organizations.
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衛生研究組織。
08:25
We built scalable
and extensible resources,
and extensible resources,
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我們建構了可規模化
和可拓展的資源，
和可拓展的資源，
08:27
like biobanks and registries
and directories of support
and directories of support
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像是生物銀行、
疾病支援的登錄與所有協助電話。
08:30
for all diseases.
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08:32
And as I learned about all those diseases
and all those disease communities,
and all those disease communities,
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當我愈了解這些疾病，
愈了解病患社群，
愈了解病患社群，
08:36
I realized that there were
two secrets in health care
two secrets in health care
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我就愈來愈意識到
在衛生保健有兩個秘密，
在衛生保健有兩個秘密，
08:39
that were impacting me greatly.
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它們對我影響很大。
08:42
The first:
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第一：
08:43
there are no ready answers
for people like my kids
for people like my kids
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無論是我的孩子
或是所有與我一起努力的人，
或是所有與我一起努力的人，
對他們來說，都沒有現成的答案。
08:47
or all the people I was working with,
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08:49
whether common or rare conditions.
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無論是普通疾病還是罕見疾病。
08:51
And the second secret:
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第二個秘密：
08:53
the answers lie in all of us together,
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答案就在大家身上，
08:57
donating our data,
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我們要一起捐出我們的數據，
09:00
our biological samples
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我們的生物樣本，
09:02
and ultimately ourselves.
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最終奉獻我們自己。
09:06
There is a small
groundswell of individuals
groundswell of individuals
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目前已經有些人帶領了這個風潮，
09:09
who are working to change this.
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他們正致力於改變這件事。
09:12
Citizen scientists, activists, hacks
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這些素人科學家、行動家、駭客們
09:15
who are using crowdsourcing,
do-it-yourself science
do-it-yourself science
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正透過群眾外包、DIY 科學
09:18
are changing the game.
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改變遊戲規則。
09:20
Even President Obama
and Vice President Biden
and Vice President Biden
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連歐巴馬總統及副總統拜登
09:24
are evangelists for the idea
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都在倡導傳播
09:26
that people should be
partners in research.
partners in research.
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「人人應該成為研究的合夥人 」
這樣的理念。
這樣的理念。
09:29
This is a founding principle
of our organization.
of our organization.
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這也是我們組織創立的初衷，
09:32
Sure, it's really hard
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當然，
無論是干預或治療的領域，
其研究及發展都是很艱辛的，
其研究及發展都是很艱辛的，
09:35
to discover and develop
interventions and therapies.
interventions and therapies.
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09:39
The science is hard,
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科學本身就難，
09:41
the regulatory regime is difficult.
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法規也很嚴格。
09:44
There are a lot of stakeholders
with lots of interests
with lots of interests
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很多手中握有重大利益的投資人
09:48
and misaligned incentives
like publishing, promotion and tenure.
like publishing, promotion and tenure.
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以不當的激勵方式，
比如以發佈、晉升、
提供終生職位的方式吸引著科學家。
提供終生職位的方式吸引著科學家。
09:53
I don't fault scientists
for following this path,
for following this path,
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我不能怪科學家們跟他們走，
09:56
but I challenge them and us
to do this differently.
to do this differently.
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但我希望他們也能和我們一樣，
10:00
To recognize that people
are at the center.
are at the center.
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認知到「人」才是中心。
10:05
Genetic Alliance has experimented
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基因聯盟已經分析過
10:07
in what it will take
to transform these crusty systems.
to transform these crusty systems.
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要付出多少才能
改變這些根生蒂固的體系。
改變這些根生蒂固的體系。
10:12
Our goal is to work without boundaries.
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我們的目標就是「工作無障礙」。
10:15
That sounds abstract,
but for us it's quite practical.
but for us it's quite practical.
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這聽起來很抽象，
但是對我們來說，這是最實際的。
10:21
When we're frustrated
that entities won't share data --
that entities won't share data --
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當我們面對相關團體
不願意分享資料時的沮喪──
不願意分享資料時的沮喪──
10:25
data that comes from people who gave
their energy, their time, their blood
their energy, their time, their blood
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這些來自大眾的精力、時間、血樣，
10:30
and even their tears --
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甚至是他們眼淚的資料──
10:32
we need to stop and ask,
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我們不禁要停下來質問，
10:34
"How is it true that we
could share, but we aren't?"
could share, but we aren't?"
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「可以分享，但卻不願意做，
這是真的嗎」？
這是真的嗎」？
10:37
We're part of this system, too.
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大家都是其中的一分子啊。
10:42
How do we make it
so that people can share ideas freely?
so that people can share ideas freely?
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我們要怎麽做才能讓人們
自由地分享這些想法呢？
自由地分享這些想法呢？
10:47
So that people can take risks
and move closer to one another?
and move closer to one another?
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怎麽做才能讓大家一起共患難，
肩並肩走在一起呢？
肩並肩走在一起呢？
10:53
This leads to a dissolving
of us versus them,
of us versus them,
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這樣做，合群的我們
才能和他們對抗，
才能和他們對抗，
10:56
not only for organizations
but also for individuals.
but also for individuals.
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這不僅是為了組織著想，
也是為病人的利益著想。
也是為病人的利益著想。
11:00
If I'm going to ask
organizations or individuals
organizations or individuals
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但如果我要求組織或個人這樣做，
11:04
to strive for these standards,
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要求他們也要遵守這些原則，
11:06
then I too need to explore
my own being and my practices.
my own being and my practices.
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那我也要反思我自己
並實際拿出行動。
並實際拿出行動。
11:12
If I'm going to ask clinicians
and researchers and administrators
and researchers and administrators
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如果我要求臨床醫生、
研究人員和管理者去冒險，
11:15
to take risks,
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11:17
then I, Sharon,
need to take risks as well.
need to take risks as well.
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那，我莎朗，也需要冒險。
11:20
I need to face my personal fears.
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我需要面對我個人的恐懼。
11:24
My fear of not having enough impact.
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面對我自己還不夠有影響力的恐懼。
11:29
My fear of not leading well.
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面對我會領導無方的恐懼。
11:33
My fear of not being enough.
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面對我自己仍不夠格的恐懼。
11:38
Just before they entered their teens,
our kids stopped us in our tracks
our kids stopped us in our tracks
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就在孩子進入青少年時期前，
孩子用大人的口吻對我們說：
孩子用大人的口吻對我們說：
「你們不要再擔心
會不會做出的改變、
會不會做出的改變、
11:42
and said, "You have to stop worrying
about making a difference,
about making a difference,
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11:46
making an impact,
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會不會帶來影響這些事，
11:47
and instead, like us,
learn to live with disease
learn to live with disease
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反之，你們要和我們一樣，
與疾病共舞，而不是抵抗它。」
11:51
rather than fight it."
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11:56
I have to ask,
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我必須問，
11:57
where does all my fear come from?
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我的這些恐懼是從哪來的？
12:01
The kids' declaration
shines a spotlight on that fear.
shines a spotlight on that fear.
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孩子們對我說的話，
像是靈光乍現，讓我明白到：
像是靈光乍現，讓我明白到：
12:05
It arises from a bedrock of love.
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我的恐懼是來自堅若磐石的愛。
12:09
I love Elizabeth and Ian.
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我愛伊莉莎白和伊恩。
12:14
I love people with PXE.
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我愛患有 PXE 的人們。
12:17
I love people with any disease.
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我愛所有生病的人。
12:20
I love people.
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我愛每一個人。
12:24
Some of my colleagues have discovered
that it is not death we fear,
that it is not death we fear,
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我其中的一些夥伴發現，
我們害怕的不是死亡，
我們害怕的不是死亡，
12:29
it is the enormity of our loving.
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而是我們無盡的愛。
12:32
This expansive love opens me to great pain
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博愛所帶給我的痛苦
12:37
as I face loss.
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就如同我面對失去一樣。
12:41
As I discover my fear,
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所以當我發現我的恐懼，
12:44
I discover that I
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我發現：
12:45
and all those around me
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我和我身旁的人，
12:47
have boundless capacity for love.
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都充滿了無盡的愛。
12:53
And I also discover
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而且我還發現，
12:56
as I move into this fear,
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當我沉浸在恐懼時，
12:59
that I can learn many new things
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我可以學很多新事物，
13:01
and find paths
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並找到
13:04
to things like practical solutions
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實用的解決方法，
13:08
as well as the core of healing and health.
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還有治癒及回復健康的關鍵。
13:15
I don't fear fear the way I used to.
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我不再像以前一樣害怕。
13:20
In fact lately, with enormous support
from all my fellow journeyers,
from all my fellow journeyers,
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其實最近，在眾同行者大力支持下，
我注意到，過去的這些現象
不再是一種警告。
不再是一種警告。
13:25
I notice that it's not a warning
the way it used to be.
the way it used to be.
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13:30
I notice that instead,
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反而是一種，
13:32
it's an invitation to go forward
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前進的動力，
13:34
because in it lies love
and the path to greater love.
and the path to greater love.
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因為這裡面充滿了愛，
它能帶我們通往更偉大的愛，
它能帶我們通往更偉大的愛，
13:39
If I turn with gentle curiosity
toward that fear,
toward that fear,
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如果我以溫柔的好奇心
來面對這些恐懼，
來面對這些恐懼，
13:44
I find enormous wealth
within myself and others
within myself and others
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我發現我和身邊的人，
內心都有著滿滿的感恩，
內心都有著滿滿的感恩，
13:49
and the ability to step into challenges
that I never thought I could.
that I never thought I could.
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也充滿了面對挑戰的勇氣，
而這些都是我從未想過的。
而這些都是我從未想過的。
13:54
My kids are ahead of me
on that path still.
on that path still.
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孩子們在這條路上
比我還要樂觀。
比我還要樂觀。
13:58
At ages 29 and 27,
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他們現在一個 29 歲、一個 27 歲，
14:00
they declare they are happy and healthy
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他們說他們現在很開心、健康，
14:02
despite having manifestations of PXE
in their skin and eyes and arteries.
in their skin and eyes and arteries.
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儘管他們的皮膚、眼睛
還有動脈上仍有 PXE 的現象。
還有動脈上仍有 PXE 的現象。
14:09
And so I invite you, us, we,
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所以，我想邀請各位，
14:12
to turn toward our fear;
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大家一起來面對恐懼；
14:14
to embrace the things that scare us
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擁抱我們害怕的事情，
14:17
and find the love at the center.
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在當中尋找愛。
14:19
We'll not only find ourselves there
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我們不僅會發現自己就在愛裡，
14:21
but we'll also be able
to step into the shoes of those we fear
to step into the shoes of those we fear
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更能真正體會我們恐懼的人，
14:25
and those who fear us.
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及害怕我們的人。
14:27
If we breathe into that fear
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如果我們能在那種恐懼中呼吸，
14:30
and are vulnerable with the systems
and people who challenge us,
and people who challenge us,
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在挑戰我們的系統
和那些人面前保持柔軟，
和那些人面前保持柔軟，
14:35
our power as changemakers
grows exponentially.
grows exponentially.
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我們改變遊戲規則的力量
就能呈指數型成長。
就能呈指數型成長。
14:40
And when we realize
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而當我們意識到，
14:41
that working on our inner life
is working on our outer life
is working on our outer life
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戰勝內在恐懼就能戰勝外在恐懼、
14:45
and outer work is inner work,
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發現外在恐懼就等於內在恐懼時，
14:48
we get down to what is real
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我們就能追尋真理，
14:50
and shit gets done.
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並搞定鳥事。
14:51
(Laughter)
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（笑聲）
14:53
There is no limit
to what we can accomplish together.
to what we can accomplish together.
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我們一起同心協力，
能創造出無限可能。
能創造出無限可能。
14:57
Thank you.
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謝謝。
14:58
(Applause)
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（掌聲）
ABOUT THE SPEAKER
Sharon Terry - Citizen biomedical researcherSharon Terry is developing ways for ordinary people to transform biomedical research and healthcare.
Why you should listen
Former college chaplain and Ashoka Fellow Sharon Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations. She's the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), which affects Terry's two adult children. She has taken citizen science (discovering the gene for PXE, developing a diagnostic test, conducting clinical trials) to a national and international arena and is developing participant-centric pathways for ordinary people to transform biomedical research and healthcare. She serves in leadership roles for many collaborations focused on productively disrupting research and policy. Terry led the coalition that fought for the passage of the Genetic Information Nondiscrimination Act. In her spare time, she enjoys traveling and paragliding with her husband.
More profile about the speakerSharon Terry | Speaker | TED.com