TEDxBoston
Nancy Frates: Meet the mom who started the Ice Bucket Challenge
Nensi Frejts (Nancy Frates): Upoznajte mamu koja je započela Ledeni izazov
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Kada je 27-godišnji Pit Frejts povredio ručni zglob na bejzbol utakmici, dobio je neočekivanu dijagnozu: nije polomljena kost, već ALS (Amiotrofična laterlana skleroza). Poznatija kao Lu Gerigova bolest, ALS izaziva paralizu i smrt - ne postoji izlečenje. Ipak, Pit je video priliku da podigne svest o ovoj bolesti. U hrabrom govoru, njegova mama Nensi Frejts priča o tome kako je porodica razvila Ledeni izazov i sa zadovoljstvom gledala kako učestvuju svi, od Džastina Timberlejka do Bila Gejtsa. Ako ste prihvatili izazov, molimo napravite sledeći korak: podelite govor kao što ste snimili video vašeg izazova.
Nancy Frates - Mother + ALS Advocate
Nancy Frates and her family have raised a projected $160 million for ALS research in 2014. How? They kicked off the ALS Ice Bucket Challenge to honor 29-year-old Pete Frates. Full bio
Nancy Frates and her family have raised a projected $160 million for ALS research in 2014. How? They kicked off the ALS Ice Bucket Challenge to honor 29-year-old Pete Frates. Full bio
Double-click the English transcript below to play the video.
00:12
Well, good afternoon.
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Dobar dan.
00:14
How many of you
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Koliko vas je učestvovalo
00:16
took the ALS Ice Bucket Challenge?
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u Ledenom izazovu?
00:19
(Applause)
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(Aplauz)
00:20
Woo hoo!
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Opa!
00:22
Well, I have to tell you, from
the bottom of our hearts,
the bottom of our hearts,
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Moram da vam kažem, iz dubine duše,
00:26
thank you so very, very much.
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mnogo, mnogo vam hvala.
00:28
Do you know to date the ALS Association
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Da li znate da je do sada ALS udruženje
00:31
has raised 125 million dollars?
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sakupilo 125 miliona dolara?
00:36
Woo hoo! (Applause)
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Vuhu! (Aplauz)
00:43
It takes me back to the summer of 2011.
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To me vraća u leto 2011. godine.
00:46
My family, my kids had all grown up.
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Moja porodica, sva moja deca su odrasla.
00:48
We were officially empty nesters,
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Zvanično smo imali
prazno porodično gnezdo,
prazno porodično gnezdo,
00:50
and we decided, let's
go on a family vacation.
go on a family vacation.
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i odlučili smo da odemo
na porodični odmor.
na porodični odmor.
00:53
Jenn, my daughter, and my son-in-law
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Džen, moja ćerka, i moj zet
00:55
came down from New York.
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je došao iz Njujorka.
00:56
My youngest, Andrew,
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Moj najmlađi zet, Endrju
00:58
he came down from his home in Charlestown
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došao je od kuće iz Čarlstauna
01:00
where he was working in Boston,
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gde je radio u Bostonu,
01:02
and my son Pete,
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i moj sin Pit,
01:03
who had played at
Boston College, baseball,
Boston College, baseball,
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koji je igrao bejzbol
na koledžu u Bostonu,
na koledžu u Bostonu,
01:06
had played baseball
professionally in Europe,
professionally in Europe,
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profesionalno je igrao bejzbol u Evropi
01:09
and had now come home and was selling
group insurance, he also joined us.
group insurance, he also joined us.
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i tada je došao jer je prodavao
grupna osiguranja, i on nam se pridružio.
grupna osiguranja, i on nam se pridružio.
01:14
And one night, I found myself
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Jedne noći, našla sam se
01:15
having a beer with Pete,
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kako pijem pivo sa Pitom,
01:17
and Pete was looking at
me and he just said,
me and he just said,
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i Pit me je gledao i samo mi rekao:
01:20
"You know, Mom, I don't know,
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"Znaš mama, ne znam,
01:22
selling group insurance
is just not my passion."
is just not my passion."
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prodavanje grupnog osiguranja
jednostavno nije moja strast."
jednostavno nije moja strast."
01:26
He said, "I just don't feel
I'm living up to my potential.
I'm living up to my potential.
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Rekao je: "Ne osećam se
kao da ostvarujem svoj pun potencijal.
kao da ostvarujem svoj pun potencijal.
01:32
I don't feel this is my mission in life."
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Ne osećam da je ovo moja misija u životu."
01:35
And he said, "You know,
oh by the way, Mom,
oh by the way, Mom,
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I rekao je: "Inače, znaš mama,
01:38
I have to leave early from vacation
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moram da se vratim ranije sa odmora
01:41
because my inter-city league team
that I play for made the playoffs,
that I play for made the playoffs,
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jer je moj tim u međugradskoj ligi
za koji sam igrao prošao u plejof,
za koji sam igrao prošao u plejof,
01:45
and I have to get back to Boston
because I can't let my team down.
because I can't let my team down.
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i moram da se vratim nazad
u Boston jer ne smem da izdam svoj tim.
u Boston jer ne smem da izdam svoj tim.
01:50
I'm just not as passionate about my job
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Ne osećam strast u svom poslu
01:53
as I am about baseball."
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kao što osećam u igranju bejzbola."
01:56
So off Pete went, and
left the family vacation —
left the family vacation —
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Tako je Pit otišao i napustio
porodični odmor -
porodični odmor -
01:59
break a mother's heart —
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slomio majčino srce -
02:00
and he went, and we
followed four days later
followed four days later
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i otišao a mi smo pratili
naredna četiri dana
naredna četiri dana
02:05
to see the next playoff game.
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da vidimo sledeću utakmicu plejofa.
02:07
We're at the playoff game,
Pete's at the plate,
Pete's at the plate,
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Bili smo na plejof utakmici,
Pit je bio na mestu udarača,
Pit je bio na mestu udarača,
02:10
and a fastball's coming in,
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i brza loptica se približavala,
02:12
and it hits him on the wrist.
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i udarila ga je u ručni zglob.
02:15
Oh, Pete.
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O, Pit.
02:17
His wrist went completely limp, like this.
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Zglob mu je postao
potpuno savitljiv, ovako.
potpuno savitljiv, ovako.
02:20
So for the next six months,
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Narednih 6 meseci,
02:21
Pete went back to his home in Southie,
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Pit se vratio nazad kući u Sauti,
02:24
kept working that unpassionate job,
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nastavlja da radi taj nezanimljivi posao,
02:27
and was going to doctors
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i išao je kod lekara
02:28
to see what was wrong with this wrist
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da vidi šta se dešava sa tim zglobom
02:30
that never came back.
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koji se nikada nije vratio
na svoje mesto.
na svoje mesto.
02:32
Six months later, in March,
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Šest meseci kasnije, u martu,
02:34
he called my husband
and me, and he said,
and me, and he said,
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pozvao je mog muža i mene i rekao:
02:36
"Oh, Mom and Dad, we have a doctor
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"Mama, tata, našao sam doktora
02:38
that found a diagnosis for that wrist.
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koji je otkrio dijagnozu za taj zglob.
02:41
Do you want to come with the
doctor's appointment with me?"
doctor's appointment with me?"
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Da li biste želeli da idete sa mnom
na zakazani sastanak?"
na zakazani sastanak?"
02:44
I said, "Sure, we'll come in."
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Rekla sam: "Naravno, ići ćemo."
02:46
That morning, Pete, John and I
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Tog jutra, Pit, Džon i ja
smo ustali, obukli se, seli u svoja kola -
02:49
all got up, got dressed, got in our cars —
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02:52
three separate cars
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tri odvojena automobila
02:53
because we were going to go to work
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jer smo išli na posao
nakon sastanka sa doktorom kako bismo
otkrili šta se dogodilo sa zglobom.
otkrili šta se dogodilo sa zglobom.
02:55
after the doctor's appointment to
find out what happened to the wrist.
find out what happened to the wrist.
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02:58
We walked into the
neurologist's office, sat down,
neurologist's office, sat down,
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Ušli smo u kancelariju neurologa, seli,
03:01
four doctors walk in,
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četiri doktora je ušetalo,
03:02
and the head neurologist sits down.
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i glavni neurolog je seo.
03:05
And he says, "Well, Pete, we've
been looking at all the tests,
been looking at all the tests,
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Rekao je: "Pit,
posmatrali smo sve testove,
posmatrali smo sve testove,
03:08
and I have to tell you,
it's not a sprained wrist,
it's not a sprained wrist,
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i moram da ti kažem,
da nije iščašen zglob,
da nije iščašen zglob,
03:11
it's not a broken wrist,
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nije polomljen zglob,
03:13
it's not nerve damage in the wrist,
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nije oštećenje nerava u zglobu,
03:15
it's not an infection,
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nije infekcija,
03:17
it's not Lyme disease."
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nije Lajmova bolest."
03:21
And there was this deliberate
elimination going up,
elimination going up,
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Dok se nizala ova detaljna eliminacija,
03:25
and I was thinking to myself,
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razmišljala sam,
03:26
where is he going with this?
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gde ide sa ovim?
03:30
Then he put his hands on his knees,
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Onda je stavio ruke na kolena,
03:32
he looked right at my
27-year-old kid, and said,
27-year-old kid, and said,
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pogledao je direktno u mog
27-godišnjeg sina, i rekao:
27-godišnjeg sina, i rekao:
03:35
"I don't know how to
tell a 27-year-old this:
tell a 27-year-old this:
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"Ne znam kako da kažem ovo 27-godišnjaku:
03:38
Pete, you have ALS."
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Pite, imaš ALS."
03:42
ALS?
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ALS?
03:44
I had had a friend whose
80-year-old father had ALS.
80-year-old father had ALS.
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Imala sam prijateljicu čiji je
80-godišnji otac imao ALS.
80-godišnji otac imao ALS.
03:49
I looked at my husband, he looked at me,
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Pogledala sam muža, on je pogledao mene,
03:51
and then we looked at the
doctor, and we said, "ALS?
doctor, and we said, "ALS?
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a onda smo pogledali
doktora i rekli: "ALS?
doktora i rekli: "ALS?
03:53
Okay, what treatment? Let's go.
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Okej, koji je tretman? Hajde.
03:56
What do we do? Let's go."
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Šta treba da radimo? Hajde."
03:59
And he looked at us, and he
said, "Mr. and Mrs. Frates,
said, "Mr. and Mrs. Frates,
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Pogledao nas je i rekao:
"Gospođo i gospodine Frejtis,
"Gospođo i gospodine Frejtis,
04:02
I'm sorry to tell you this,
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žao mi je što ovo kažem,
04:04
but there's no treatment
and there's no cure."
and there's no cure."
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ali nema tretmana, jer nema leka."
04:08
We were the worst culprits.
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Bili smo najgori osuđenici.
04:11
We didn't even understand
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Nismo čak ni shvatili
04:14
that it had been 75 years since Lou Gehrig
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da je prošlo 75 godina od Lua Geriga
04:16
and nothing had been done
in the progress against ALS.
in the progress against ALS.
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i ništa se nije urađeno u napretku
borbe protiv ALS-a.
borbe protiv ALS-a.
04:21
So we all went home, and Jenn and Dan
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Svi smo se vratili kući, i Džen i Den
04:24
flew home from Wall Street,
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su odleteli avionom kući sa Vol Strita,
04:27
Andrew came home from Charlestown,
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Endru je došao kući iz Čarlstauna,
04:29
and Pete went to B.C. to pick up
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a Pit je otišao u Britansku Kolumbiju
da pokupi
da pokupi
04:32
his then-girlfriend Julie
and brought her home,
and brought her home,
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svoju datašnju devojku Džuli
i vrati je kući,
i vrati je kući,
04:35
and six hours later after diagnosis,
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i šest sati kasnije nakon dijagnoze,
04:37
we're sitting around
having a family dinner,
having a family dinner,
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sedeli smo za stolom na porodičnoj večeri,
04:40
and we're having small chat.
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i razgovarali.
04:42
I don't even remember
cooking dinner that night.
cooking dinner that night.
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Čak se i ne sećam šta sam kuvala te noći.
04:45
But then our leader, Pete, set the vision,
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Onda je naš vođa Pit postavio viziju
04:51
and talked to us just like
we were his new team.
we were his new team.
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i govorio nam kao da smo mi njegov tim.
04:54
He said, "There will be
no wallowing, people."
no wallowing, people."
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Rekao je: "Nema žaljenja, ljudi."
04:58
He goes, "We're not looking back,
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Nastavio je: "Ne gledamo nazad,
05:00
we're looking forward.
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gledamo napred.
05:02
What an amazing opportunity
we have to change the world.
we have to change the world.
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Kakvu divnu priliku imamo
da promenimo svet.
da promenimo svet.
05:08
I'm going to change the face
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Promeniću izgled
05:10
of this unacceptable situation of ALS.
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ove neprihvatljive situacije ALS-a.
05:14
We're going to move the needle,
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Pokrenućemo stvari
05:15
and I'm going to get it in front
of philanthropists like Bill Gates."
of philanthropists like Bill Gates."
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i dospeću ispred filantropa
poput Bil Gejtsa."
poput Bil Gejtsa."
05:20
And that was it. We
were given our directive.
were given our directive.
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I to je bilo to. Dobili smo uputstva.
05:23
So in the days and months that followed,
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U narednim danima i mesecima,
05:26
within a week, we had
our brothers and sisters
our brothers and sisters
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u nedelju dana imali smo braću i sestre
05:29
and our family come to us,
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i našu porodicu kod nas u domu,
05:31
that they were already
creating Team Frate Train.
creating Team Frate Train.
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tako da su uveliko stvarali Tim Frejti.
05:34
Uncle Dave, he was the webmaster;
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Ujak Dejv je bio internet profesionalac,
05:36
Uncle Artie, he was the accountant;
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ujak Arti je bio knjigovođa;
05:39
Auntie Dana, she was the graphic artist;
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ujna Dejna je bila grafički umetnik;
05:42
and my youngest son, Andrew,
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a moj najmlađi sin, Endru,
05:44
quit his job, left his
apartment in Charlestown
apartment in Charlestown
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nakon što je napustio posao
i svoj stan u Čarlstaunu
i svoj stan u Čarlstaunu
05:47
and says, "I'm going to take care
of Pete and be his caregiver."
of Pete and be his caregiver."
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rekao je: "Ja ću se brinuti o Pitu
i biti njegov negovatelj."
i biti njegov negovatelj."
05:51
Then all those people,
classmates, teammates,
classmates, teammates,
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Potom su svi ti ljudi,
drugari iz škole i saigrači,
drugari iz škole i saigrači,
05:54
coworkers that Pete had inspired
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kolege koje je Pit inspirisao
05:57
throughout his whole life,
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tokom čitavog svog života,
05:59
the circles of Pete all started
intersecting with one another,
intersecting with one another,
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Pitovi krugovi su počeli
da se ukrštaju jedan sa drugim,
da se ukrštaju jedan sa drugim,
06:03
and made Team Frate Train.
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i načinili su Tim Frejti.
06:07
Six months after diagnosis,
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Šest meseci nakon dijagnoze
06:10
Pete was given an award at a
research summit for advocacy.
research summit for advocacy.
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Pit je dobio nagradu za zalaganje
na istraživačkom skupu.
na istraživačkom skupu.
06:15
He got up and gave a very eloquent speech,
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Ustao je i održao veoma elokventan govor,
06:17
and at the end of the
speech, there was a panel,
speech, there was a panel,
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i na kraju govora održana je
panel diskusija
panel diskusija
06:20
and on the panel were these
pharmaceutical executives
pharmaceutical executives
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i na panelu su bili
farmacetuski rukovodioci,
farmacetuski rukovodioci,
06:23
and biochemists and clinicians
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biohemičari i kliničari
06:25
and I'm sitting there and
I'm listening to them
I'm listening to them
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i sedim tamo i slušam ih
06:28
and most of the content
went straight over my head.
went straight over my head.
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i najviše tog sadržaja mi je
bilo preko glave.
bilo preko glave.
06:31
I avoided every science
class I ever could.
class I ever could.
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Izbegavala sam svaki čas biologije
koji sam ikada mogla.
koji sam ikada mogla.
06:33
But I was watching these people,
and I was listening to them,
and I was listening to them,
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Posmatrala sam te ljude i slušala sam ih,
06:36
and they were saying,
"I, I do this, I do that,"
"I, I do this, I do that,"
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i govorili su:
"Ja, ja radim ovo, ja radim ono,"
"Ja, ja radim ovo, ja radim ono,"
06:39
and there was a real
unfamiliarity between them.
unfamiliarity between them.
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i postojala je istinska
nepovezanost među njima.
nepovezanost među njima.
06:43
So at the end of their talk, the panel,
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Na kraju njihovog razgovora
06:46
they had questions and answers,
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imali su pitanja i odgovore
06:48
and boom, my hand went right up,
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i bum, moja ruka se podigla,
06:50
and I get the microphone,
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i uzela sam mikrofon,
06:51
and I look at them and I say, "Thank you.
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pogledala sam ih i rekla: "Hvala vam.
06:53
Thank you so much for working in ALS.
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Mnogo vam hvala što radite na ALS-u.
06:56
It means so very much to us."
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Veoma nam znači to."
06:57
I said, "But I do have to tell you
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Rekla sam: "Ali moram da vam kažem
06:59
that I'm watching your body language
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da posmatram vaš govor tela
07:01
and I'm listening to what you're saying.
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i slušam šta govorite.
07:03
It just doesn't seem like there's a whole
lot of collaboration going on here.
lot of collaboration going on here.
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5371
Nekako mi se ne čini da se ovde
ne dešava baš puno saradnje.
ne dešava baš puno saradnje.
07:09
And not only that, where's the flip chart
149
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I ne samo to, gde je papir
07:12
with the action items and the
follow-up and the accountability?
follow-up and the accountability?
150
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4782
sa akcionim stavkama, pratećim
koracima i odgovornostima?
koracima i odgovornostima?
07:17
What are you going to do
after you leave this room?"
after you leave this room?"
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Šta ćete da uradite
kada napustite ovu prostoriju?
kada napustite ovu prostoriju?
07:21
And then I turned around
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Potom sam se okrenula
07:23
and there was about 200 pairs
of eyes just staring at me.
of eyes just staring at me.
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i bilo je oko 200 pari očiju
uprtih u mene.
uprtih u mene.
07:30
And it was that point that I realized
154
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3560
To je bila tačka gde sam shvatila
07:34
that I had talked about
the elephant in the room.
the elephant in the room.
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da sam govorila o problemu
o kom se ćutalo.
o kom se ćutalo.
07:38
Thus my mission had begun.
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Tu je moja misija započela.
07:41
So over the next couple of years,
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Tokom nekoliko godina,
07:44
Pete — we've had our highs and our lows.
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imali smo uspone i padove sa Pitom.
07:47
Pete was put on a compassionate use drug.
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Pit je stavljen na samilosno
korišćenje lekova.
korišćenje lekova.
07:49
It was hope in a bottle for
the whole ALS community.
the whole ALS community.
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To je bila nada za čitavu ALS zajednicu.
07:53
It was in a phase III trial.
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Bio je pokušaj faze 3.
07:55
Then six months later, the
data comes back: no efficacy.
data comes back: no efficacy.
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Šest meseci kasnije,
podaci su se vratili: bez efekta.
podaci su se vratili: bez efekta.
07:59
We were supposed to
have therapies overseas,
have therapies overseas,
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Trebalo je da imamo terapije preko okeana,
08:02
and the rug was
pulled out from under us.
pulled out from under us.
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i tlo pod nogama nam se izmicalo.
08:04
So for the next two years,
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Naredne 2 godine,
08:06
we just watched my son
be taken away from me,
be taken away from me,
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posmatrali smo kako nam oduzimaju sina,
08:10
little by little every day.
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3671
malo po malo svakog dana.
08:14
Two and a half years ago,
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Pre dve ipo godine,
08:16
Pete was hitting home
runs at baseball fields.
runs at baseball fields.
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Pit je postizao uspehe
na bejzbol terenima.
na bejzbol terenima.
08:20
Today, Pete's completely paralyzed.
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Danas je Pit totalno paralizovan.
08:23
He can't hold his head up any longer.
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Ne može više da drži glavu uspravljeno.
08:26
He's confined to a motorized wheelchair.
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Osuđen je na motorna kolica.
08:28
He can no longer swallow or eat.
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Ne može više da guta i jede.
08:31
He has a feeding tube.
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Ima cev za hranjenje.
08:33
He can't speak.
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Ne može da govori.
08:37
He talks with eye gaze technology
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Govori pomoću tehnologije pokretanja očiju
08:40
and a speech generating device,
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i sprave za stvaranje govora,
08:42
and we're watching his lungs,
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1469
i posmatramo njegova pluća
08:44
because his diaphragm
eventually is going to give out
eventually is going to give out
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3005
jer će mu dijafragma verovatno otkazati
08:47
and then the decision will be made
to put him on a ventilator or not.
to put him on a ventilator or not.
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4778
i biće odlučeno da li će ga staviti
na ventilator ili ne.
na ventilator ili ne.
08:51
ALS robs the human of all their physical
parts, but the brain stays intact.
parts, but the brain stays intact.
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ALS zarobljuje čoveka u svim fizičkim
delovima, ali mozak ostaje netaknut.
delovima, ali mozak ostaje netaknut.
09:01
So July 4th, 2014,
182
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Dakle, 4. jula 2014. godine,
09:06
75th year of Lou Gehrig's
inspirational speech comes,
inspirational speech comes,
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4408
desio se inspirativni govor
75-godišnjeg Lua Geriga,
75-godišnjeg Lua Geriga,
09:10
and Pete is asked by MLB.com to write
an article in the Bleacher Report.
an article in the Bleacher Report.
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i uredništvo sajta MLB.com je pitalo
Pita da napiše članak u Bličer Riportu.
Pita da napiše članak u Bličer Riportu.
09:16
And it was very significant, because he
wrote it using his eye gaze technology.
wrote it using his eye gaze technology.
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7093
I bio je veoma značajan, jer ga je napisao
koristeći tehnologiju pomeranja očiju.
koristeći tehnologiju pomeranja očiju.
09:23
Twenty days later,
the ice started to fall.
the ice started to fall.
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Dvadeset dana kasnije,
led je počeo da pada.
led je počeo da pada.
09:29
On July 27th, Pete's
roommate in New York City,
roommate in New York City,
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27. jula, Pitov cimer iz Njujorka,
09:34
wearing a Quinn For The Win shirt,
188
562176
2609
noseći majicu sa natpisom
"Kvin do pobede",
"Kvin do pobede",
09:36
signifying Pat Quinn, another
ALS patient known in New York,
ALS patient known in New York,
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564785
3850
označavajući Peta Kvina,
drugog ALS pacijenta iz Njujorka,
drugog ALS pacijenta iz Njujorka,
09:40
and B.C. shorts
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568635
2051
i B.C. šorc
09:42
said, "I'm taking the ALS
Ice Bucket Challenge,"
Ice Bucket Challenge,"
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570686
4492
rekao je: "Prihvatam ovaj ALS izazov"
09:47
picked up the ice, put it over his head.
192
575178
2780
podigao led i prelio ga preko glave.
09:49
"And I'm nominating ..."
And he sent it up to Boston.
And he sent it up to Boston.
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4208
"I nominujem...", i to poslao u Boston.
09:54
And that was on July 27th.
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582166
3424
To je bilo 27. jula.
09:57
Over the next couple
of days, our news feed
of days, our news feed
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2571
Tokom nekoliko narednih dana,
naša naslovna stranica
naša naslovna stranica
10:00
was full of family and friends.
196
588161
2535
je bila puna porodice i prijatelja.
10:02
If you haven't gone back,
the nice thing about Facebook
the nice thing about Facebook
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590696
2678
Ako se niste vratili unazad,
dobra stvar oko Fejsbuka je
dobra stvar oko Fejsbuka je
10:05
is that you have the dates, you can go back.
198
593374
2213
da imate datume
i možete da se vratite unazad.
i možete da se vratite unazad.
10:07
You've got to see Uncle Artie's
human Bloody Mary.
human Bloody Mary.
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595587
3971
Morate da vidite ujka Artijev
ljudski Bladi meri.
ljudski Bladi meri.
10:11
I'm telling you, it's one of the best ones,
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3146
Uveravam vas, to je jedan od najboljih,
10:14
and that was probably in day two.
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602704
2962
i verovatno je snimljen drugog dana.
10:17
By about day four, Uncle
Dave, the webmaster,
Dave, the webmaster,
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605666
3970
Oko četvrtog dana, ujka Dejv,
veb profesionalac
veb profesionalac
10:21
he isn't on Facebook,
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609636
1973
on nije na Fejsbuku,
10:23
and I get a text from him,
and it says, "Nancy,
and it says, "Nancy,
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611609
2887
dobila sam poruku od njega
u kojoj piše: "Nensi,
u kojoj piše: "Nensi,
10:26
what the hell is going on?"
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614496
2894
šta se zaboga dešava?"
10:29
Uncle Dave gets a hit
every time Pete's website
every time Pete's website
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3597
Ujka Dejv dobija obaveštenje
svaki put kad neko ode
svaki put kad neko ode
10:32
is gone onto, and his
phone was blowing up.
phone was blowing up.
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620987
3023
na Pitov sajt, a njegov telefon je goreo.
10:36
So we all sat down and we realized,
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624010
1855
Onda smo se svi okupili i shvatili,
10:37
money is coming in — how amazing.
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625865
3852
novac se sliva - sjajno.
10:41
So we knew awareness
would lead to funding,
would lead to funding,
210
629717
2544
Znali smo da osvešćenje
vodi do finansiranja,
vodi do finansiranja,
10:44
we just didn't know it would
only take a couple of days.
only take a couple of days.
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2978
samo što nismo znali da se to
dogodilo u nekoliko dana.
dogodilo u nekoliko dana.
10:47
So we got together, put our best
501(c)(3)s on Pete's website,
501(c)(3)s on Pete's website,
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635239
5157
Svi smo se skupili, stavili svoje
najbolje formulare na Pitov vebsajt,
najbolje formulare na Pitov vebsajt,
10:52
and off we went.
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2109
i tako je krenulo.
10:54
So week one, Boston media.
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642505
3181
Prve nedelje, Bostonski mediji.
10:57
Week two, national media.
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645686
2468
Druge nedelje, nacionalni mediji.
11:00
It was during week two
that our neighbor next door
that our neighbor next door
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648154
2454
Tokom druge nedelje
naš komšija vrata do nas
naš komšija vrata do nas
11:02
opened up our door and threw a pizza
217
650608
2392
je otvorio vrata i bacio picu
11:05
across the kitchen floor, saying,
218
653000
2360
preko kuhinjskog poda, govoreći:
11:07
"I think you people might
need food in there."
need food in there."
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655360
2939
"Mislim da će vam tamo trebati hrane."
11:10
(Laughter)
220
658299
2205
(Smeh)
11:12
Week three, celebrities —
Entertainment Tonight,
Entertainment Tonight,
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660504
4016
Treće nedelje, zvezde -
Entertejnment Tunajt,
Entertejnment Tunajt,
11:16
Access Hollywood.
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664520
2066
Akses Holivud.
11:18
Week four, global — BBC, Irish Radio.
223
666586
6155
Četvrte nedelje, globalno -
Bi Bi Si, Ajriš Radio.
Bi Bi Si, Ajriš Radio.
11:24
Did anyone see "Lost In Translation"?
224
672741
2922
Da li je neko gledao
"Izgubljene u prevodu"?
"Izgubljene u prevodu"?
11:27
My husband did Japanese television.
225
675663
2189
Moj muž je gostovao
na japanskoj televiziji.
na japanskoj televiziji.
11:29
It was interesting.
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1710
Bilo je zanimljivo.
11:31
(Laughter)
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679562
2052
(Smeh)
11:33
And those videos, the popular ones.
228
681614
5762
Svi ti popularni video klipovi.
11:39
Paul Bissonnette's
glacier video, incredible.
glacier video, incredible.
229
687376
4488
Ledeni video Pola Bizoneta, neverovatno.
11:43
How about the redemption nuns of Dublin?
230
691864
2737
Šta kažete na opatice u Dablinu?
11:46
Who's seen that one?
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694601
1705
Ko je video taj?
11:48
It's absolutely fantastic.
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696306
2587
Fenomenalan je.
11:50
J.T., Justin Timberlake.
233
698893
2217
Džej Ti, Džastin Timberlejk.
11:53
That's when we knew, that
was a real A-list celebrity.
was a real A-list celebrity.
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701110
3769
To su oni za koje smo tada znali,
to su bile zvezde sa A liste.
to su bile zvezde sa A liste.
11:56
I go back on my texts, and I can see
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704879
2891
Kada se vratim u svoje
poruke mogu da pronađem
poruke mogu da pronađem
11:59
"JT! JT!" My sister texting me.
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5132
"Džej Ti! Džej Ti!" Moja sestra mi šalje.
12:04
Angela Merkel, the chancellor of Germany.
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3248
Angela Merkel, nemačka kancelarka.
12:08
Incredible.
238
716150
1806
Neverovatno.
12:09
And the ALS patients,
239
717956
2310
ALS pacijenti,
12:12
you know what their favorite
ones are, and their families'?
ones are, and their families'?
240
720266
3194
znate li koji su omiljeni klipovi njima
i njihovim porodicama?
i njihovim porodicama?
12:15
All of them.
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1590
Svi.
12:17
Because this misunderstood and
underfunded "rare" disease,
underfunded "rare" disease,
242
725050
4848
Jer su podlegli ovoj neshvaćenoj,
potcenjenoj i "retkoj" bolesti,
potcenjenoj i "retkoj" bolesti,
12:21
they just sat and watched people
saying it over and over: "ALS, ALS."
saying it over and over: "ALS, ALS."
243
729898
6480
samo su sedeli i gledali ljude kako
govore iznova i iznova: "ALS, ALS."
govore iznova i iznova: "ALS, ALS."
12:28
It was unbelievable.
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736378
3209
Bilo je za ne poverovati.
12:31
And those naysayers,
245
739587
2043
I za sve one koji nisu verovali,
12:33
let's just talk a couple
of stats, shall we?
of stats, shall we?
246
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2839
hajde da pomenemo nekoliko statistika.
12:36
Okay, so the ALS Association,
247
744469
2638
ALS udruženje
12:39
they think by year end,
it'll be 160 million dollars.
it'll be 160 million dollars.
248
747107
3957
smatra da će do kraja godine
skupiti 160 miliona dolara.
skupiti 160 miliona dolara.
12:43
ALS TDI in Cambridge,
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751064
2585
ALS TDI u Kembridžu,
12:45
they raised three million dollars.
250
753649
2052
je sakupio 3 miliona dolara.
12:47
Well, guess what?
251
755701
1442
Znate šta?
12:49
They had a clinical trial for a drug
that they've been developing.
that they've been developing.
252
757143
3294
Imali su kliničko isprobavanje
za lek koji su razvijali.
za lek koji su razvijali.
12:52
It was on a three-year track for funding.
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760437
3116
Bilo je trogodišnje finansiranje.
12:55
Two months.
254
763553
1487
Dva meseca.
12:57
It's coming out starting in two months.
255
765040
2288
Izlazi za dva meseca.
12:59
(Applause)
256
767328
3940
(Aplauz)
13:05
And YouTube has reported
257
773791
5015
Jutjub je izvestio
13:10
that over 150 countries have posted
Ice Bucket Challenges for ALS.
Ice Bucket Challenges for ALS.
258
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7078
da je preko 150 zemalja postavilo
Ledeni izazov za ALS.
Ledeni izazov za ALS.
13:17
And Facebook, 2.5 million videos,
259
785884
6571
A Fejsbuk - 2,5 miliona video snimka,
13:24
and I had the awesome adventure
260
792455
3115
a ja sam imala sjajnu avanturu
13:27
visiting the Facebook campus last week,
261
795570
2720
tokom posete kampusa Fejsbuka
prošle nedelje,
prošle nedelje,
13:30
and I said to them, "I know
what it was like in my house.
what it was like in my house.
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2767
i rekla sam im: "Znam kako
je bilo u mojoj kući.
je bilo u mojoj kući.
13:33
I can't imagine what it
was like around here."
was like around here."
263
801057
2620
Ne mogu da zamislim kako je
to izgledalo ovde."
to izgledalo ovde."
13:35
All she said was, "Jaw-dropping."
264
803677
4713
Samo je rekla: "Fascinantno".
13:40
And my family's favorite video?
265
808390
4980
Omiljeni video moje porodice?
13:45
Bill Gates.
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813370
3206
Bil Gejts.
13:48
Because the night Pete was diagnosed,
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3083
Jer u noć kada je Pitu
dijagnostikovana bolest,
dijagnostikovana bolest,
13:51
he told us that he was going to get ALS in
front of philanthropists like Bill Gates,
front of philanthropists like Bill Gates,
268
819659
7585
rekao je da će istaći ALS ispred
filantropa poput Bila Gejtsa.
filantropa poput Bila Gejtsa.
13:59
and he did it.
269
827244
1546
I uspeo je.
14:00
Goal number one, check.
270
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2470
Svetski broj jedan, obavljeno.
14:03
Now on to the treatment and cure.
271
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1943
Sada sledi tretman i nega.
14:05
(Applause)
272
833203
6295
(Aplauz)
14:14
So okay, after all of this ice,
273
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3054
U redu, nakon svog ovog leda,
14:17
we know that it was much more
274
845829
1896
znamo da je tu mnogo više
14:19
than just pouring buckets of
ice water over your head,
ice water over your head,
275
847725
2822
od samog polivanja kofom
ledene vode preko glave,
ledene vode preko glave,
14:22
and I really would like to leave you
276
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1828
i volela bih da vas napustim
14:24
with a couple of things that
I'd like you to remember.
I'd like you to remember.
277
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2914
sa nekoliko stvari koje bih
volela da zapamtite.
volela da zapamtite.
14:27
The first thing is,
278
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1675
Prva stvar je
14:28
every morning when you wake up,
279
856964
2226
da svako jutro kada se probudite
14:31
you can choose to live your day in positivity.
280
859190
3076
možete da birate da živite
svoj dan pozitivno.
svoj dan pozitivno.
14:36
Would any of you blame me
281
864249
2271
Da li bi me iko od vas krivio
14:38
if I just was in the fetal position
282
866520
2339
da sam bila u fetalnoj poziciji
14:40
and pulled the covers
over my head every day?
over my head every day?
283
868859
3237
i povlačila prekrivač preko
glave svakog dana?
glave svakog dana?
14:44
No, I don't think anybody would blame me,
284
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2212
Ne, ne mislim da bi me iko krivio,
14:46
but Pete has inspired us to wake up
285
874308
3002
ali Pit nas je inspirisao da se probudimo
14:49
every morning and be
positive and proactive.
positive and proactive.
286
877310
3186
svakog jutra i budemo pozitivni
i proaktivni.
i proaktivni.
14:52
I actually had to ditch support groups
287
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2804
Morala sam da odbacim grupe podrške
14:55
because everybody was in there saying that
288
883300
2479
jer je svaka bila tu govoreći
da je prskanje svojih
dvorišta hemikalijama
dvorišta hemikalijama
14:57
spraying their lawns with chemicals,
289
885779
1834
14:59
that's why they got ALS,
290
887613
1868
razlog zbog kojeg su dobili ALS,
a ja sam im odgovorila:
"Ne bih se složila."
"Ne bih se složila."
15:01
and I was like, "I don't think so,"
291
889481
1959
15:03
but I had to get away from the negativity.
292
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4019
ali sam morala da pobegnem
od negativnosti.
od negativnosti.
15:07
The second thing I want to leave you with
293
895459
2887
Druga stvar sa kojom sam želela
da vas napustim
da vas napustim
15:10
is the person at the
middle of the challenge
middle of the challenge
294
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2814
je da osoba u sred izazova
15:13
has to be willing to have
the mental toughness
the mental toughness
295
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3080
mora da bude voljna da poseduje
psihičku snagu
psihičku snagu
15:16
to put themselves out there.
296
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3745
da se izmesti odatle.
15:19
Pete still goes to baseball games
297
907985
2225
Pit i dalje ide na bejzbol utakmice
15:22
and he still sits with his
teammates in the dugout,
teammates in the dugout,
298
910210
3054
i još uvek sedi sa svojim
saigračima u zemunicama
saigračima u zemunicama
15:25
and he hangs his gravity feed bag
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i drži svoju kesu za hranjenje
15:28
right on the cages.
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na svojim plućima.
15:29
You'll see the kids, they're
up there hanging it up.
up there hanging it up.
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Videćete tu decu, tu su.
15:31
"Pete, is that okay?" "Yup."
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"Pite, jel' ovako u redu?" "Da"
15:32
And then they put it
right into his stomach.
right into his stomach.
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I stave mu je na stomak.
15:36
Because he wants them to see
what the reality of this is,
what the reality of this is,
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Jer želi da vide koja je stvarnost ovoga,
15:39
and how he's never, ever going to give up.
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i kako nikada neće odustati.
15:43
And the third thing I
want to leave you with:
want to leave you with:
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I treća stvar sa kojom
želim da vas napustim:
želim da vas napustim:
15:45
If you ever come across a situation
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Ako se ikada nađete u situaciji
15:48
that you see as so unacceptable,
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koju vidite kao neprihvatljivu,
15:51
I want you to dig down as deep as you can
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želim da kopate unutar sebe
što više možete
što više možete
15:55
and find your best mother bear
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i nađete najbolju stvar
15:58
and go after it.
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i streimte ka tome.
16:00
(Applause)
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(Aplauz)
16:34
Thank you.
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Hvala vam.
16:36
(Applause)
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(Aplauz)
16:40
I know that I'm running over,
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Znam da prelazim vreme,
16:42
but I've got to leave you with this:
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ali moram da vas ostavim i sa ovime:
16:44
the gifts that my son has given me.
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pokloni koje mi je dao sin.
16:47
I have had 29 years
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Imala sam priliku da 29 godina
16:50
of having the honor of being the mother
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budem počastvovana što sam majka
16:53
of Pete Frates.
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Pita Frejtisa.
16:55
Pete Frates has been inspiring
and leading his whole life.
and leading his whole life.
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Pit Frejts je inspirisao i bio lider
čitavog svog života.
čitavog svog života.
17:00
He's thrown out kindness,
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Pružio je dobrotu,
17:03
and all that kindness
has come back to him.
has come back to him.
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i sva ta dobrota mu se vratila.
17:06
He walks the face of the Earth
right now and knows why he's here.
right now and knows why he's here.
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Trenutno šeta po Zemlji
i zna zašto je ovde.
i zna zašto je ovde.
17:13
What a gift.
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Kakav poklon.
17:16
The second thing that my son has given me
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Druga stvar koju mi je sin poklonio
17:18
is he's given me my mission in life.
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je da mi je dao misiju u životu.
17:21
Now I know why I'm here.
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Sada znam zašto sam ovde.
17:23
I'm going to save my son,
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Spasiću svog sina
17:26
and if it doesn't happen in time for him,
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i ako se to ne desi na vreme
17:29
I'm going to work so that no other mother
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potrudiću se da nijedna majka
17:32
has to go through what I'm going through.
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ne mora da prolazi kroz ono što sam ja.
17:35
And the third thing,
and last but not least
and last but not least
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I treća stvar, poslednji
ali ne i beznačajan
ali ne i beznačajan
17:38
gift that my son has given me,
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poklon koji mi je sin dao,
17:41
as an exclamation point
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kao uzvičnik
17:43
to the miraculous month
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na fantastičan mesec
17:45
of August 2014:
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avgust 2014: devojka sa kojom je izašao
17:49
That girlfriend that he went to get on
the night of diagnosis is now his wife,
the night of diagnosis is now his wife,
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te noći kad je dijagnostikovan
je sada njegova žena,
je sada njegova žena,
17:55
and Pete and Julie have given me my
granddaughter, Lucy Fitzgerald Frates.
granddaughter, Lucy Fitzgerald Frates.
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i Pit i Džuli su mi podarili unuku,
Lusi Ficdžerald Frejtis.
Lusi Ficdžerald Frejtis.
18:03
Lucy Fitzgerald Frates came two weeks early
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Lusi Ficdžerald Frejtis je došla
na svet dve nedelje ranije
na svet dve nedelje ranije
18:08
as the exclamation point
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kao uzvičnik
18:10
on August 31st, 2014.
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31. avugsta 2014. godine,
18:15
And so —
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I -
18:16
(Applause) —
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(Aplauz)
18:25
And so let me leave you with
Pete's words of inspiration
Pete's words of inspiration
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Dozvolite mi da vas napustim
sa Pitovim inspirativnim rečima
sa Pitovim inspirativnim rečima
18:29
that he would use to classmates,
coworkers and teammates.
coworkers and teammates.
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kojima bi se obraćao svojim drugarima
iz škole, kolegama i saigračima.
iz škole, kolegama i saigračima.
18:36
Be passionate.
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Budite strastveni.
18:40
Be genuine.
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Budite jedinstveni.
18:42
Be hardworking.
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Budite vredni.
18:45
And don't forget to be great.
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I ne zaboravite da budete sjajni.
18:49
Thank you. (Applause)
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Hvala vam. (Aplauz)
ABOUT THE SPEAKER
Nancy Frates - Mother + ALS AdvocateNancy Frates and her family have raised a projected $160 million for ALS research in 2014. How? They kicked off the ALS Ice Bucket Challenge to honor 29-year-old Pete Frates.
Why you should listen
When Nancy Frates’ son was diagnosed with ALS in 2012, she was confused. Pete was a 27-year-old athlete and the only people she’d ever known with this disease were elderly already. Ever since that life-changing moment, she and her family have found their sense of purpose in working tirelessly to raise awareness about ALS and to stimulate funding for research. Because it’s been 75 years since Lou Gehrig delivered his famed farewell speech, and no treatment or cure has been found. This, says Nancy Frates, is unacceptable.
This July, Pete Frates inspired the ALS Ice Bucket Challenge, which quickly became a viral fundraising phenomenon. The challenge inspired people across the United States and world to dump a bucket of ice on their head and pass the challenge on to three friends. In all, The ALS Association projects that the challenge will have raised $160 million for research by the end of 2014.
Pete Frates is now paralyzed and mute—he speaks to the world through eye gazer technology and through his family. They all remain hopeful for progress in treating this terrible disease.
Nancy Frates | Speaker | TED.com