TEDGlobal 2013
Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson
Roberto D'Angelo + Francesca Fedeli: Roberto D'Angelo + Francesca Fedeli: Pelajaran hidup dalam penyakit putra kami
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Roberto D'Angelo dan Francesca Fedeli merasa bayi mereka, Mario, adalah bayi yang sehat -- sampai pada usia 10 hari, mereka menemukan bahwa dia mengalami stroke pra-kelahiran. Mereka menghadapi pertanyaan sulit karena Mario tidak dapat mengendalikan tubuh sebelah kirinya: Apakah dia akan menjadi "normal?" Apakah dia dapat hidup dengan baik? Kisah yang menyentuh dari orang tua yang menghadapi ketakutan mereka -- dan bagaimana mereka membalikannya.
Roberto D'Angelo + Francesca Fedeli - Parents
Roberto D'Angelo and Francesca Fedeli created the social enterprise FightTheStroke.org to open up a dialogue about the devastating effects of strokes at a young age. This issue is important to them for a simple reason: because they've been through it themselves with their son Mario. Full bio
Roberto D'Angelo and Francesca Fedeli created the social enterprise FightTheStroke.org to open up a dialogue about the devastating effects of strokes at a young age. This issue is important to them for a simple reason: because they've been through it themselves with their son Mario. Full bio
Double-click the English transcript below to play the video.
00:13
Francesca Fedeli: Ciao.
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Francesca Fedeli: Halo.
00:15
So he's Mario. He's our son.
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Ini adalah putra kami, Mario.
00:18
He was born two and a half years ago,
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Dia lahir dua setengah tahun yang lalu,
00:21
and I had a pretty tough pregnancy
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dan kehamilan saya cukup sulit
00:25
because I had to stay still in a bed for, like, eight months.
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karena saya harus tetap di ranjang selama delapan bulan.
00:29
But in the end everything seemed to be under control.
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Namun pada akhirnya semuanya tampak terkendali.
00:32
So he got the right weight at birth.
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Saat dilahirkan, berat badannya normal,
00:35
He got the right Apgar index.
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indeks Apgarnya juga normal.
00:37
So we were pretty reassured by this.
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Kami cukup lega karena hal ini.
00:40
But at the end, 10 days later after he was born,
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Namun pada akhirnya, 10 hari setelah dia lahir
00:47
we discovered that he had a stroke.
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kami mengetahui bahwa dia terkena stroke.
00:49
As you might know,
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Mungkin Anda sudah tahu
00:51
a stroke is a brain injury.
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bahwa stroke adalah cidera otak.
00:54
A perinatal stroke could be something
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Stroke pra-kelahiran adalah sesuatu
00:56
that can happen during the nine months of pregnancy
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yang dapat terjadi dalam sembilan bulan kehamilan
01:00
or just suddenly after the birth,
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atau tepat setelah dilahirkan,
01:03
and in his case, as you can see,
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dan dalam kasus ini, seperti yang Anda lihat
01:06
the right part of his brain has gone.
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bagian kanan dari otaknya sudah hilang.
01:10
So the effect that this stroke could have on Mario's body
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Jadi dampak yang mungkin dari stroke ini pada tubuh Mario
01:15
could be the fact that he couldn't be able to control
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adalah dia tidak dapat mengendalikan
01:19
the left side of his body.
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tubuh sebelah kirinya.
01:21
Just imagine, if you have a computer and a printer
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Bayangkan saja, jika Anda memiliki komputer dan printer
01:25
and you want to transmit, to input to print out a document,
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lalu Anda ingin mengirim atau mencetak naskah,
01:29
but the printer doesn't have the right drives,
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namun printer itu tidak memiliki piranti lunak yang tepat,
01:33
so the same is for Mario.
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itulah yang terjadi pada Mario.
01:36
It's just like, he would like to move his left side
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Misalnya, dia ingin menggerakkan tubuh sebelah kirinya,
01:39
of his body, but he's not able to transmit the right input
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namun dia tidak dapat mengirimkan masukan yang tepat
01:43
to move his left arm and left leg.
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untuk menggerakkan tangan dan kaki kirinya.
01:48
So life had to change.
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Jadi kehidupan harus berubah.
01:50
We needed to change our schedule.
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Kami harus mengubah jadwal kami.
01:52
We needed to change the impact that this birth had
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Kami harus mengubah dampak dari kelahiran itu
01:58
on our life.
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pada hidup kami.
02:00
Roberto D'Angelo: As you may imagine,
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Roberto D'Angelo: Seperti yang Anda kira,
02:02
unfortunately, we were not ready.
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kami tidak siap untuk hal ini.
02:05
Nobody taught us how to deal with such kinds of disabilities,
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Tidak ada yang mengajarkan kami untuk
menghadapi kelumpuhan seperti ini
menghadapi kelumpuhan seperti ini
02:09
and as many questions as possible started
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dan banyak sekali pertanyaan muncul
02:11
to come to our minds.
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di dalam pikiran kami.
02:13
And that has been really a tough time.
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Dan itu adalah waktu yang sangat sulit.
02:16
Questions, some basics, like, you know,
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Pertanyaan itu, beberapa sangat mendasar, seperti
02:18
why did this happen to us?
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mengapa hal ini terjadi pada kami?
02:20
And what went wrong?
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Apa yang salah?
02:22
Some more tough, like, really,
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Beberapa pertanyaan lebih sulit, seperti
02:25
what will be the impact on Mario's life?
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apa dampaknya bagi kehidupan Mario kelak?
02:27
I mean, at the end, will he be able to work?
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Maksud saya, apakah nanti dia dapat bekerja?
02:28
Will he be able to be normal?
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Apakah dia bisa menjadi orang normal?
02:30
And, you know, as a parent, especially for the first time,
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Dan, Anda tahu, sebagai orang yang baru pertama kali menjadi orang tua,
02:33
why is he not going to be better than us?
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mengapa dia tidak akan lebih baik dari kami?
02:37
And this, indeed, really is tough to say,
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Dan hal ini benar-benar sangat sulit untuk diungkapkan,
02:40
but a few months later, we realized that
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namun beberapa bulan kemudian, kami menyadari
02:43
we were really feeling like a failure.
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bahwa kami merasa seperti orang yang sudah gagal.
02:46
I mean, the only real product of our life,
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Maksud saya, produk sejati dari hidup kami
02:49
at the end, was a failure.
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pada akhirnya, adalah produk gagal.
02:51
And you know, it was not a failure for ourselves in itself,
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Dan Anda tahu, ini bukan hanya kegagalan bagi kami,
02:57
but it was a failure that will impact his full life.
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namun kegagalan yang akan berdampak pada seluruh hidupnya.
03:02
Honestly, we went down.
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Jujur saja, kami merasa hancur.
03:03
I mean we went really down, but at the end,
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Kami benar-benar hancur, namun pada akhirnya
03:07
we started to look at him,
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kami mulai melihatnya,
03:09
and we said, we have to react.
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dan berkata, kami harus bertindak.
03:11
So immediately, as Francesca said, we changed our life.
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Jadi seperti yang telah dikatakan Francesca,
kami mengubah hidup kami.
kami mengubah hidup kami.
03:14
We started physiotherapy, we started the rehabilitation,
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Kami mulai melakukan fisioterapi dan rehabilitasi,
03:17
and one of the paths that we were following
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dan salah satu cara yang kami ikuti
03:19
in terms of rehabilitation is the mirror neurons pilot.
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dalam rehabilitasi ini adalah pilot cermin syaraf.
03:22
Basically, we spent months doing this with Mario.
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Kami menghabiskan berbulan-bulan
melakukannya bersama Mario.
melakukannya bersama Mario.
03:26
You have an object, and we showed him
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Ada sebuah benda di sana dan
kami menunjukkan kepadanya
kami menunjukkan kepadanya
03:29
how to grab the object.
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bagaimana mengambil benda itu.
03:31
Now, the theory of mirror neurons simply says
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Kini, teori cermin syaraf mengatakan
03:34
that in your brains, exactly now, as you watch me doing this,
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bahwa dalam otak Anda saat ini,
saat Anda melihat saya melakukan hal ini,
saat Anda melihat saya melakukan hal ini,
03:38
you are activating exactly the same neurons
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Anda mengaktifkan sel syaraf yang sama
dengan sel aktif
dengan sel aktif
03:40
as if you do the actions.
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ketika Anda melakukannya.
03:44
It looks like this is the leading edge in terms of rehabilitation.
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Tampaknya ini adalah hal terdepan dalam hal rehabilitasi.
03:48
But one day we found that Mario
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Namun suatu hari kami tahu bahwa Mario
03:51
was not looking at our hand.
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tidak melihat tangan kami.
03:55
He was looking at us.
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Dia melihat kami.
03:57
We were his mirror.
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Kami adalah cermin baginya.
04:00
And the problem, as you might feel,
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Dan masalahnya, seperti yang Anda rasakan
04:02
is that we were down, we were depressed,
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adalah kami menjadi depresi,
04:04
we were looking at him as a problem,
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kami melihatnya sebagai masalah kami,
04:06
not as a son, not from a positive perspective.
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bukan putra kami, bukan dari sudut pandang yang positif.
04:11
And that day really changed our perspective.
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Dan hari itu benar-benar mengubah sudut pandang kami.
04:14
We realized that we had to become
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Kami menyadari bahwa kami harus menjadi
04:18
a better mirror for Mario.
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cermin yang lebih baik bagi Mario.
04:20
We restarted from our strengths,
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Kami memulai kembali dari kekuatan kami,
04:22
and at the same time we restarted from his strengths.
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dan pada saat yang sama kami mulai dari kekuatannya.
04:26
We stopped looking at him as a problem,
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Kami berhenti melihat dirinya sebagai masalah
04:29
and we started to look at him as an opportunity to improve.
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dan mulai melihat dirinya sebagai
kesempatan untuk menjadi lebih baik.
kesempatan untuk menjadi lebih baik.
04:33
And really, this was the change,
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Dan hal ini sungguh menjadi sebuah perubahan,
04:36
and from our side, we said,
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dan kami berkata,
04:39
"What are our strengths that we really can bring to Mario?"
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"Apa kekuatan yang dapat kami bawa untuk Mario?"
04:42
And we started from our passions.
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Kami memulai dari gairah kami,
04:43
I mean, at the end, my wife and myself
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maksud saya, pada akhirnya, saya dan istri saya
04:45
are quite different,
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cukup berbeda,
04:46
but we have many things in common.
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namun memiliki banyak kesamaan.
04:49
We love to travel, we love music,
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Kami menyukai tamasya, musik,
04:51
we love to be in places like this,
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dan suka berada di tempat-tempat seperti ini,
04:53
and we started to bring Mario with us
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dan kami mulai membawa Mario bersama kami
04:55
just to show to him the best things that we can show to him.
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untuk menunjukkan hal terbaik
yang dapat kami tunjukkan kepada dirinya.
yang dapat kami tunjukkan kepada dirinya.
04:59
This short video is from last week.
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Video singkat ini kami ambil minggu lalu.
05:05
I am not saying --
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Saya tidak mengatakan --
05:06
(Applause) —
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(Tepuk tangan) --
05:08
I am not saying it's a miracle. That's not the message,
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Saya tidak mengatakan ini adalah keajaiban.
Bukan itu pesannya,
Bukan itu pesannya,
05:11
because we are just at the beginning of the path.
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karena kami baru saja berada di awal jalan ini.
05:13
But we want to share what was the key learning,
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Namun kami ingin membagikan kunci pembelajaran
05:17
the key learning that Mario drove to us,
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yang dibawa Mario kepada kami,
05:19
and it is to consider what you have as a gift
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yaitu menganggap apa yang Anda miliki sebagai anugerah,
05:22
and not only what you miss,
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dan bukan hanya apa Anda lewatkan,
05:26
and to consider what you miss just as an opportunity.
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dan menganggap apa yang Anda lewatkan
hanya sebagai sebuah kesempatan.
hanya sebagai sebuah kesempatan.
05:30
And this is the message that we want to share with you.
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Dan inilah pesan yang ingin kami bagikan kepada Anda.
05:33
This is why we are here.
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Inilah alasan kami berada di sini.
05:37
Mario!
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Mario!
05:39
And this is why --
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Dan inilah mengapa --
05:40
(Applause) —
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(Tepuk tangan) --
05:45
And this is why
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Dan inilah mengapa
05:50
we decided to share the best mirror in the world with him.
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kami memutuskan untuk berbagi cermin terbaik di dunia dengannya.
05:56
And we thank you so much, all of you.
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Terima kasih banyak kepada Anda semua.
05:59
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
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FF: Terima kasih.
RD: Terima kasih. Sampai jumpa.
RD: Terima kasih. Sampai jumpa.
06:01
(Applause)
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(Tepuk tangan)
06:05
FF: Thank you. (Applause)
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FF: Terima kasih. (Tepuk tangan)
ABOUT THE SPEAKER
Roberto D'Angelo + Francesca Fedeli - ParentsRoberto D'Angelo and Francesca Fedeli created the social enterprise FightTheStroke.org to open up a dialogue about the devastating effects of strokes at a young age. This issue is important to them for a simple reason: because they've been through it themselves with their son Mario.
Why you should listen
When Roberto D'Angelo and Francesca Fedeli’s son, Mario, was just 10 days old, he was diagnosed as having had a perinatal stroke in the right side of his brain, which left him unable to move the left side of his body. Through mirror neuron rehabilitation, Mario is now 5 years old and has greatly improved motion.
The tech-savvy couple founded FightTheStroke.org to gather and share the experiences of families who have been affected by all types of infant and childhood strokes. The social movement wants to open up a dialogue about the devastating effects of this traumatic event, advocating for young stroke survivors and using technology and open medicine as enablers for their better future. Together, as a family, they’re promoting the awareness of this story as motivational speakers at events like TED, they're proud ambassaros of TEDMED in Italy and promoters of the first Medicine Hackathon in Italy, aimed to regroup the leading experts on Medicine and Innovation. Roberto is Director for Online Learning at Microsoft Italy, while Francesca currently focuses her management expertise in the FightTheStroke.org project, and they are developing an innovative rehabilitation platform based on Mirror Neurons. Francesca also acts as a member of various Board of Patients Associations, became an Eisenhower Fellow in 2014 and the first Ashoka Fellow in Italy in 2015.
Roberto D'Angelo + Francesca Fedeli | Speaker | TED.com