TEDGlobal 2013
Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson
Roberto D'Angelo i Francesca Fedeli: Životna pouka u bolesti djeteta
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Roberto D'Angelo i Francesca Fedeli vjerovali su da je njihov tek rođeni sin Mario zdrav - Sve dok deset dana kasnije nisu otkrili da je Mario pretrpio perinatalni moždani udar. Suočavajući se s Marijevom nesposobnošću da upravlja lijevom stranom svoga tijela, oni su se pograbili s teškim pitanjima: Hoće li biti "normalan"? Hoće li moći živjeti pun život? Dirljiva priča o roditeljima koji se suočavaju sa svojim strahovima i o tome kako su ih nadvladali.
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: Ciao!
00:15
So he's Mario. He's our son.
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Ovo je Mario. Naš sin.
00:18
He was born two and a half years ago,
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Rođen je prije dvije pol godine.
00:21
and I had a pretty tough pregnancy
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Moja je trudnoća bila prilično teška,
00:25
because I had to stay still in a bed for, like, eight months.
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jer sam morala mirovati
oko osam mjeseci.
oko osam mjeseci.
00:29
But in the end everything seemed to be under control.
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Na koncu, činilo se da je
sve pod kontrolom.
sve pod kontrolom.
00:32
So he got the right weight at birth.
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Pri rođenju, tjelesna težina je bila dobra.
00:35
He got the right Apgar index.
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Apgar-indeks bio je dobar.
00:37
So we were pretty reassured by this.
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Sve nas je to prilično ohrabrilo.
00:40
But at the end, 10 days later after he was born,
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Međutim, nakon svega,
deset dana nakon rođenja,
deset dana nakon rođenja,
00:47
we discovered that he had a stroke.
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otkrili smo da je
imao moždani udar.
imao moždani udar.
00:49
As you might know,
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Kao što vjerojatno znate,
00:51
a stroke is a brain injury.
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moždani udar znači ozljedu mozga.
00:54
A perinatal stroke could be something
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Perinatalni moždani udar može se
00:56
that can happen during the nine months of pregnancy
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dogoditi tijekom devet mjeseci trudnoće
01:00
or just suddenly after the birth,
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ili neposredno nakon rođenja.
01:03
and in his case, as you can see,
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A u njegovom slučaju,
kao što možete vidjeti,
kao što možete vidjeti,
01:06
the right part of his brain has gone.
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desni dio mozga je nestao.
01:10
So the effect that this stroke could have on Mario's body
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Moguća posljedica ovakvog udara je
01:15
could be the fact that he couldn't be able to control
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da Mario neće biti u stanju kontrolirati
01:19
the left side of his body.
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lijevu stranu svoga tijela.
01:21
Just imagine, if you have a computer and a printer
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Zamislite samo da imate računalo i pisač,
01:25
and you want to transmit, to input to print out a document,
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i želite ispisati neki dokument,
01:29
but the printer doesn't have the right drives,
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ali desna strana pisača ne funkcionira...
01:33
so the same is for Mario.
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Mario je u takvom stanju.
01:36
It's just like, he would like to move his left side
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Ako bi poželio pomaknuti
lijevu stranu svoga tijela,
lijevu stranu svoga tijela,
01:39
of his body, but he's not able to transmit the right input
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ne bi bio u stanju odaslati
pravu informaciju
pravu informaciju
01:43
to move his left arm and left leg.
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svojoj lijevoj ruci ili lijevoj nozi.
01:48
So life had to change.
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I tako se život morao promijeniti...
01:50
We needed to change our schedule.
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Morali smo izmijeniti svoje planove...
01:52
We needed to change the impact that this birth had
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Morali smo nekako preokrenuti utjecaj
01:58
on our life.
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koji je ovo rođenje imalo na naš život.
02:00
Roberto D'Angelo: As you may imagine,
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Roberto D'Angelo: Kao što možete zamisliti,
02:02
unfortunately, we were not ready.
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mi, nažalost, nismo bili spremni...
02:05
Nobody taught us how to deal with such kinds of disabilities,
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Nitko nas nije poučio suočavanju
s ovakvim vrstama oštećenja,
s ovakvim vrstama oštećenja,
02:09
and as many questions as possible started
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i bezbroj nam je pitanja
02:11
to come to our minds.
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započelo navirati u misli.
02:13
And that has been really a tough time.
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Bilo je to zaista teško razdoblje.
02:16
Questions, some basics, like, you know,
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Pitanja, neka temeljna poput, znate:
02:18
why did this happen to us?
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Zašto se ovo dogodilo baš nama?
02:20
And what went wrong?
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Što je pošlo po zlu?
02:22
Some more tough, like, really,
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Kao i neka zahtjevnija pitanja poput:
02:25
what will be the impact on Mario's life?
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Kako će ovo utjecati na Marijev život?
02:27
I mean, at the end, will he be able to work?
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Na koncu, hoće li biti sposoban raditi?
02:28
Will he be able to be normal?
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Hoće li biti normalan?
02:30
And, you know, as a parent, especially for the first time,
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I, znate, kao roditelj, osobito
kad ste tek postali roditelj:
kad ste tek postali roditelj:
02:33
why is he not going to be better than us?
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Zašto on neće postati bolji od nas?
02:37
And this, indeed, really is tough to say,
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I, zbilja je teško to reći,
02:40
but a few months later, we realized that
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ali nekoliko mjeseci kasnije,
shvatili smo
shvatili smo
02:43
we were really feeling like a failure.
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da smo se stvarno osjećali
kao potpuni gubitnici.
kao potpuni gubitnici.
02:46
I mean, the only real product of our life,
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Hoću reći, jedini stvarni
proizvod našega života,
proizvod našega života,
02:49
at the end, was a failure.
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ispao je, na kraju, potpuni neuspjeh.
02:51
And you know, it was not a failure for ourselves in itself,
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Znate, nije to, sam po sebi,
bio naš neuspjeh,
bio naš neuspjeh,
02:57
but it was a failure that will impact his full life.
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već neuspjeh koji će utjecati
na čitav njegov život.
na čitav njegov život.
03:02
Honestly, we went down.
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Iskreno, skršilo nas je.
03:03
I mean we went really down, but at the end,
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Mislim, stvarno nas je slomilo...
03:07
we started to look at him,
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Međutim, počeli smo promatrati njega,
03:09
and we said, we have to react.
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i rekli smo si: Moramo se pokrenuti!
03:11
So immediately, as Francesca said, we changed our life.
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I odmah smo, kao što je Francesca rekla,
izmijenili svoj život.
izmijenili svoj život.
03:14
We started physiotherapy, we started the rehabilitation,
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Započeli smo sa fizioterapijom,
krenuli smo na rehabilitaciju,
krenuli smo na rehabilitaciju,
03:17
and one of the paths that we were following
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i jedan od smjerova
koje smo u rehabilitaciji
koje smo u rehabilitaciji
03:19
in terms of rehabilitation is the mirror neurons pilot.
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slijedili bili su nalazi istraživanja
o zrcalnim neuronima.
o zrcalnim neuronima.
03:22
Basically, we spent months doing this with Mario.
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U osnovi, mjesecima smo to radili s Mariom.
03:26
You have an object, and we showed him
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Uzeli bismo predmet i pokazali mu
03:29
how to grab the object.
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kako da ga zgrabi.
03:31
Now, the theory of mirror neurons simply says
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Teorija o zrcalnim neuronima
jednostavno kaže
jednostavno kaže
03:34
that in your brains, exactly now, as you watch me doing this,
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da upravo sad, dok me promatrate
kako ovo činim, u vašem mozgu se
kako ovo činim, u vašem mozgu se
03:38
you are activating exactly the same neurons
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aktiviraju upravo oni neuroni
03:40
as if you do the actions.
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kao i kad biste to stvarno činili.
03:44
It looks like this is the leading edge in terms of rehabilitation.
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Ovo su, čini se, najnovije spoznaje
u području rehabilitacije.
u području rehabilitacije.
03:48
But one day we found that Mario
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No, jednoga dana otkrili smo da Mario
03:51
was not looking at our hand.
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ne gleda u naše ruke.
03:55
He was looking at us.
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Gledao je u nas.
03:57
We were his mirror.
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Mi smo bili njegovo zrcalo.
04:00
And the problem, as you might feel,
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A problem je, kao što možda slutite,
04:02
is that we were down, we were depressed,
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bio u tome što smo mi bili na dnu.
Bili smo depresivni.
Bili smo depresivni.
04:04
we were looking at him as a problem,
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Njega smo doživljavali kao problem...
04:06
not as a son, not from a positive perspective.
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Ne kao sina.
Ne iz pozitivnog kuta.
Ne iz pozitivnog kuta.
04:11
And that day really changed our perspective.
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Taj je dan potpuno
izmijenio našu perspektivu.
izmijenio našu perspektivu.
04:14
We realized that we had to become
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Uvidjeli smo da moramo postati
04:18
a better mirror for Mario.
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bolje zrcalo našemu Mariju.
04:20
We restarted from our strengths,
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Krenuli smo ponovno od naših snaga,
04:22
and at the same time we restarted from his strengths.
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istodobno se vrativši i njegovim snagama.
04:26
We stopped looking at him as a problem,
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Prestali smo u njemu vidjeti samo problem,
04:29
and we started to look at him as an opportunity to improve.
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i započeli smo ga promatrati kao
potencijal koji se može razviti.
potencijal koji se može razviti.
04:33
And really, this was the change,
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I doista, to je bila istinska promjena.
04:36
and from our side, we said,
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Sa svoje smo se strane pitali:
04:39
"What are our strengths that we really can bring to Mario?"
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"Koje su to naše jake strane
kojima možemo pomoći Mariju?"
kojima možemo pomoći Mariju?"
04:42
And we started from our passions.
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I krenuli smo od svojih strasti...
04:43
I mean, at the end, my wife and myself
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Mislim, moja supruga i ja smo
04:45
are quite different,
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prilično različiti,
04:46
but we have many things in common.
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ali imamo i dosta zajedničkoga.
04:49
We love to travel, we love music,
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Volimo putovati, volimo glazbu,
04:51
we love to be in places like this,
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volimo biti na mjestima poput ovoga,
04:53
and we started to bring Mario with us
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i počeli smo Marija voditi sa sobom!
04:55
just to show to him the best things that we can show to him.
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Samo da bismo mu pokazali ono
najbolje što mu možemo pokazati.
najbolje što mu možemo pokazati.
04:59
This short video is from last week.
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Ovaj je kratki video od prošloga tjedna...
05:05
I am not saying --
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Ne kažem da...
05:06
(Applause) —
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(Pljesak)
05:08
I am not saying it's a miracle. That's not the message,
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Ne kažem da je ovo čudo.
Nije to poruka,
Nije to poruka,
05:11
because we are just at the beginning of the path.
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jer tek smo na početku puta.
05:13
But we want to share what was the key learning,
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Ali, ono što želimo podijeliti s vama
ključna je pouka,
ključna je pouka,
05:17
the key learning that Mario drove to us,
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ključna pouka koju nam je Mario dao,
05:19
and it is to consider what you have as a gift
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a to je da razmislite o svome daru,
05:22
and not only what you miss,
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a ne samo o onome što vam nedostaje!
05:26
and to consider what you miss just as an opportunity.
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I da u onome što vam nedostaje
uočavate priliku!
uočavate priliku!
05:30
And this is the message that we want to share with you.
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To je poruka koju smo željeli
podijeliti s vama.
podijeliti s vama.
05:33
This is why we are here.
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Radi toga smo ovdje!
05:37
Mario!
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Mario!
05:39
And this is why --
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Radi ovoga...
05:40
(Applause) —
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(Pljesak)
05:45
And this is why
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Radi ovoga smo
05:50
we decided to share the best mirror in the world with him.
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odlučili najbolje zrcalo na svijetu
podijeliti - s njim!
podijeliti - s njim!
05:56
And we thank you so much, all of you.
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Silno smo vam zahvalni!
Svima vama!
Svima vama!
05:59
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
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FF: Hvala vam!
RD: Hvala vam! Doviđenja!
RD: Hvala vam! Doviđenja!
06:01
(Applause)
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(Pljesak)
06:05
FF: Thank you. (Applause)
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FF: Hvala vam.
(Pljesak)
(Pljesak)
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