Nancy Frates: Meet the mom who started the Ice Bucket Challenge
Нэнси Фрэйтиз: Ice Bucket Challenge-ыг эхлүүлсэн ээж
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.
оролцсон бэ?
the bottom of our hearts,
хандив босгосныг мэдэх үү?
(Алга ташилт)
go on a family vacation.
Boston College, baseball,
professionally in Europe,
бейсболын багт байсан.
group insurance, he also joined us.
гэртээ бидэн дээр ирсэн.
me and he just said,
ингэж хэлсэн:
is just not my passion."
миний сонирхол биш юм шиг байна.
I'm living up to my potential.
чадахгүй байгаа мэт санагдаж байна.
гэж бодож байна" гэв.
oh by the way, Mom,
that I play for made the playoffs,
because I can't let my team down.
багийнхныхаа урмыг хугалмааргүй байна.
бейсболд дуртай шигээ
left the family vacation —
гэр бүлийн амралтнаас буцаж
followed four days later
эцсийн шатны
Pete's at the plate,
Пит талбай дээр байсан.
and me, and he said,
doctor's appointment with me?"
find out what happened to the wrist.
neurologist's office, sat down,
been looking at all the tests,
хариуг харлаа.
it's not a sprained wrist,
elimination going up,
үргэлжилсээр байхад
27-year-old kid, and said,
tell a 27-year-old this:
яаж хэлэхээ мэдэхгүй байна.
80-year-old father had ALS.
нэг найз надад байсан.
doctor, and we said, "ALS?
said, "Mr. and Mrs. Frates,
"Ноён болон хатагтай Фрейтиз,
and there's no cure."
эдгээх арга байхгүй."
in the progress against ALS.
гэдгийг ойлгоогүй байсан.
and brought her home,
having a family dinner,
оройн хоол идэнгээ
cooking dinner that night.
цаашид яахыг шийдсэн.
we were his new team.
гишүүнтэй ярьж байгаа юм шиг ярьсан.
no wallowing, people."
сэтгэл санаагаар унахгүй,
we have to change the world.
боломж бидэнд байна гээч?
хүлээн зөвшөөрөхийн аргагүй
of philanthropists like Bill Gates."
шиг хүмүүст хүргэнэ" гэсэн.
were given our directive.
Бидний цаашдын зам тодорхой болсон.
our brothers and sisters
creating Team Frate Train.
apartment in Charlestown
Чарльзтаун дах гэрээ орхин
of Pete and be his caregiver."
classmates, teammates,
intersecting with one another,
хоорондоо холбогдож
research summit for advocacy.
эрдэм шинжилгээний хурал дээр шагнасан.
speech, there was a panel,
хэлэлцүүлэг болж,
pharmaceutical executives
I'm listening to them
went straight over my head.
class I ever could.
аль болох бултдаг байсан.
and I was listening to them,
"I, I do this, I do that,"
unfamiliarity between them.
байдал үүсгэсэн.
lot of collaboration going on here.
байгаа мэт санагдахгүй байна.
follow-up and the accountability?
хүснэгт, үзүүлэлт хаана байгаа вэ?
after you leave this room?"
та нар юу хийх вэ?" гэж асуусан.
of eyes just staring at me.
the elephant in the room.
олон зүйл тохиолдсон.
эм хэрэглэж эхэлсэн.
the whole ALS community.
харагдах гэрэл байсан.
data comes back: no efficacy.
ямар ч үр нөлөө өгөөгүй байлаа.
have therapies overseas,
хийлгэх ёстой байсан ч,
pulled out from under us.
be taken away from me,
runs at baseball fields.
ялалт байгуулж байсан бол
байнга ажигладаг,
eventually is going to give out
to put him on a ventilator or not.
аппаратанд оруулах эсэхээ шийднэ.
parts, but the brain stays intact.
inspirational speech comes,
илтгэл болоход
an article in the Bleacher Report.
нийтлэл бичихийг хүссэн.
wrote it using his eye gaze technology.
тэр үүнийг нүднийхээ харцаар бичсэн.
the ice started to fall.
roommate in New York City,
өрөөний найз нь
ALS-тэй хүнийг илэрхийлсэн
ALS patient known in New York,
Ice Bucket Challenge,"
сорилтонд оролцож байна" гэж хэлээд
And he sent it up to Boston.
хэмээн Бостон руу дамжуулсан.
of days, our news feed
Фэйсбүүкийн нэг сайхан зүйл нь
the nice thing about Facebook
human Bloody Mary.
харах хэрэгтэй.
Dave, the webmaster,
and it says, "Nancy,
every time Pete's website
түүнд мэдээлэл ирдэг ба
phone was blowing up.
Гайхалтай!
хандив цуглахыг ойлгож байсан ч
would lead to funding,
only take a couple of days.
501(c)(3)s on Pete's website,
дугаарыг вебсайт дээрээ байршуулаад л
хэвлэл мэдээллийн хэрэгсэл.
үндэсний хэмжээний хэвлэл мэдээлэл.
that our neighbor next door
need food in there."
Entertainment Tonight,
одууд Entertainment Tonight,
дэлхий даяар, BBC телевиз, Ирландын радио.
киног үзсэн үү?
нэвтрүүлэгт орсон.
glacier video, incredible.
оргилын видео үнэхээр гайхалтай.
was a real A-list celebrity.
од гэдгийг мэдсэн.
гэж бичсэн байсан.
ones are, and their families'?
дуртай нь аль нь гээч?
underfunded "rare" disease,
санхүүжилтгүй, ховор өвчнийг
saying it over and over: "ALS, ALS."
хэлэхийг сонссон.
of stats, shall we?
it'll be 160 million dollars.
цуглуулна гэж бодсон.
that they've been developing.
эмийн туршилтыг хийсэн.
Ice Bucket Challenges for ALS.
сорилтод оролцсон.
Фэйсбүүк байранд зочилсон.
what it was like in my house.
би мэдэж байна.
was like around here."
төсөөлөхгүй байна" гэсэн.
бичлэг аль нь вэ гэж үү?
front of philanthropists like Bill Gates,
таниулна гэж байсан.
хамаагүй илүү гэдгийг мэдэж байсан.
ice water over your head,
I'd like you to remember.
over my head every day?
байвал намайг буруутгах уу?
эерэг, идэвхтэй байх
positive and proactive.
middle of the challenge
the mental toughness
teammates in the dugout,
байгаа хүүхдүүдийг харвал тэд
up there hanging it up.
"Тийм ээ."
right into his stomach.
what the reality of this is,
тэднийг бодит байдлыг харж,
мэдээсэй гэж хүсдэг юм.
want to leave you with:
мэдэж байна.
and leading his whole life.
уриалагч, удирдагч байсан.
has come back to him.
right now and knows why he's here.
дараачийн гайхалтай бэлэг бол
адил зовлон туулахгүй.
and last but not least
the night of diagnosis is now his wife,
явсан найз охин, одоогийн эхнэр Жули болон
granddaughter, Lucy Fitzgerald Frates.
Люси Фитзжералд Фрейтизийг бэлэглэсэн.
хоёр долоо хоногийн өмнө
Pete's words of inspiration
coworkers and teammates.
үгийг хэлье.
(Алга ташилт)
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