Nancy Frates: Meet the mom who started the Ice Bucket Challenge
نانسي فريتس: قابل السيدة التي أطلقت تحدي دلو الثلج
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.
the bottom of our hearts,
منظمة التصلب الجانبي الضموري ALS
go on a family vacation.
Boston College, baseball,
في جامعة بوسطن
professionally in Europe,
group insurance, he also joined us.
وأصبح يعمل بوكالة لتأمين الشركات،
وجدت نفسي جالسة مع بيت
me and he just said,
is just not my passion."
I'm living up to my potential.
oh by the way, Mom,
that I play for made the playoffs,
وصل إلى التصفيات النهائية
because I can't let my team down.
لكي لا أخيِّب أمل فريقي.
left the family vacation —
followed four days later
Pete's at the plate,
وبينما بيت في الملعب
and me, and he said,
doctor's appointment with me?"
إلى موعد الطبيب؟"
وركبنا في السيارات
find out what happened to the wrist.
لمعرفة ماذا حدث لرسغ بيت.
neurologist's office, sat down,
الأمراض العصبية، وجلسنا
been looking at all the tests,
لقد قمنا بدراسة جميع الاختبارات
it's not a sprained wrist,
elimination going up,
27-year-old kid, and said,
tell a 27-year-old this:
شخص بعمر الـ 27 هذا:
80-year-old father had ALS.
كان مصاب بالـ ALS
doctor, and we said, "ALS?
said, "Mr. and Mrs. Frates,
and there's no cure."
من هذا المرض حتى الان
لوو جيرغ منذ 75عاما
in the progress against ALS.
للشفاء من مرض الـ ALS
and brought her home,
having a family dinner,
cooking dinner that night.
we were his new team.
no wallowing, people."
we have to change the world.
of philanthropists like Bill Gates."
كـ بيل غيتس
were given our directive.
our brothers and sisters
creating Team Frate Train.
apartment in Charlestown
وترك منزله في شارليستون
of Pete and be his caregiver."
classmates, teammates,
من أصدقاء
الذين قام بيت بالهامهم
intersecting with one another,
research summit for advocacy.
speech, there was a panel,
كان هناك هيئة خبراء
pharmaceutical executives
الصيدلانيين
I'm listening to them
went straight over my head.
class I ever could.
and I was listening to them,
واستمع لهم
"I, I do this, I do that,"
"أنا سأفعل هذا، وأنا سافعل هذا"
unfamiliarity between them.
هيئة الخبراء
"شكرا لكم"
lot of collaboration going on here.
follow-up and the accountability?
after you leave this room?"
of eyes just staring at me.
the elephant in the room.
the whole ALS community.
لمجتمع مرض الـ ALS
data comes back: no efficacy.
جاءت النتائج من دون اي تقدم
have therapies overseas,
في الخارج
pulled out from under us.
be taken away from me,
runs at baseball fields.
eventually is going to give out
to put him on a ventilator or not.
جهاز تنفس صناعي او لا
parts, but the brain stays intact.
من الانسان ولكن العقل يبقى سليما
inspirational speech comes,
an article in the Bleacher Report.
ان يكتب مقالة
wrote it using his eye gaze technology.
استخدم تكنولوجيا ملاحقة العين لكتابتها
the ice started to fall.
بدأ الثلج بالتساقط
roommate in New York City,
زميل بيت في نيويورك
ALS patient known in New York,
Ice Bucket Challenge,"
And he sent it up to Boston.
وأرسل التحدي لمدينة بوسطن
of days, our news feed
the nice thing about Facebook
الجميل في فيسبوك
human Bloody Mary.
Dave, the webmaster,
العم دايف، مطور الموقع
and it says, "Nancy,
every time Pete's website
phone was blowing up.
يا للروعة
would lead to funding,
ستقود الى التمويل
only take a couple of days.
501(c)(3)s on Pete's website,
على موقع بيت
تغطى من قبل اعلام بوسطن
تغطى من الاعلام الوطني
that our neighbor next door
قامت جارتنا
need food in there."
Entertainment Tonight,
انترنيرمينت تونايت
بي بي سي ، الراديو الايرلندي
glacier video, incredible.
انه رائع
was a real A-list celebrity.
ones are, and their families'?
والمفضل لعائلتهم؟
underfunded "rare" disease,
والغير مدعوم
saying it over and over: "ALS, ALS."
يقولون: "ALS ، ALS"
of stats, shall we?
it'll be 160 million dollars.
مع نهاية السنة
that they've been developing.
كانوا يعملون على تطويره
Ice Bucket Challenges for ALS.
بتحدي دلو الثلج
what it was like in my house.
الوضع في منزلي في تلك الاثناء"
was like around here."
front of philanthropists like Bill Gates,
على المتبرعين امثال بيل غيتس
ice water over your head,
I'd like you to remember.
أود ان تتذكروهما
over my head every day?
positive and proactive.
middle of the challenge
the mental toughness
teammates in the dugout,
up there hanging it up.
يسألونه:
"نعم"
right into his stomach.
what the reality of this is,
want to leave you with:
and leading his whole life.
has come back to him.
right now and knows why he's here.
ويعلم لماذا هو هنا
and last but not least
the night of diagnosis is now his wife,
هي زوجته الأن
granddaughter, Lucy Fitzgerald Frates.
لوسي فيتزجير فراتس
ولدت قبل أسبوعين من موعدها
Pete's words of inspiration
coworkers and teammates.
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