ABOUT THE SPEAKER
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.

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.

 

More profile about the speaker
Roberto D'Angelo + Francesca Fedeli | Speaker | TED.com
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: En la enfermedad de nuestro bebé, una lección de vida.

Filmed:
1,239,223 views

Roberto D'Angelo and Francesca Fedeli thought their baby boy Mario was healthy -- until at 10 days old, they discovered he'd had a perinatal stroke. With Mario unable to control the left side of his body, they grappled with tough questions: Would he be "normal?” Could he live a full life? The poignant story of parents facing their fears -- and how they turned them around.
- 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

Double-click the English transcript below to play the video.

00:13
FrancescaFrancesca FedeliFedeli: CiaoCiao.
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Francesca Fedeli: Ciao.
00:15
So he's MarioMario. He's our sonhijo.
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Este es Mario, nuestro hijo.
00:18
He was bornnacido two and a halfmitad yearsaños agohace,
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Nació hace dos años y medio.
00:21
and I had a prettybonita toughdifícil pregnancyel embarazo
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Tuve un embarazo muy difícil
00:25
because I had to staypermanecer still in a bedcama for, like, eightocho monthsmeses.
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porque tuve que quedarme en cama unos ocho meses.
00:29
But in the endfin everything seemedparecía to be underdebajo controlcontrolar.
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Pero finalmente todo parecía estar bajo control.
00:32
So he got the right weightpeso at birthnacimiento.
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Pesaba lo apropiado al nacer.
00:35
He got the right ApgarApgar indexíndice.
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Un índice apropiado de Apgar.
00:37
So we were prettybonita reassuredTranquilizado by this.
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Y esto nos dio cierta tranquilidad.
00:40
But at the endfin, 10 daysdías laterluego after he was bornnacido,
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Pero finalmente, 10 días después del nacimiento,
00:47
we discovereddescubierto that he had a strokecarrera.
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descubrimos que había sufrido un accidente cerebrovascular.
00:49
As you mightpodría know,
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Como saben,
00:51
a strokecarrera is a braincerebro injurylesión.
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un ACV es un derrame cerebral.
00:54
A perinatalperinatal strokecarrera could be something
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Un ACV perinatal es algo
00:56
that can happenocurrir duringdurante the ninenueve monthsmeses of pregnancyel embarazo
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que puede suceder durante los nueve meses del embarazo
01:00
or just suddenlyrepentinamente after the birthnacimiento,
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o repentinamente luego del parto,
01:03
and in his casecaso, as you can see,
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y en su caso, como pueden ver,
01:06
the right partparte of his braincerebro has goneido.
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la parte derecha de su cerebro había desaparecido.
01:10
So the effectefecto that this strokecarrera could have on Mario'sMario bodycuerpo
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El ACV podía suponer para Mario
01:15
could be the facthecho that he couldn'tno pudo be ablepoder to controlcontrolar
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la pérdida de la capacidad para controlar
01:19
the left sidelado of his bodycuerpo.
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el costado izquierdo de su cuerpo.
01:21
Just imagineimagina, if you have a computercomputadora and a printerimpresora
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Imagínense, si tuviesen una computadora y una impresora
01:25
and you want to transmittransmitir, to inputentrada to printimpresión out a documentdocumento,
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y tuviesen que enviar un documento para imprimir,
01:29
but the printerimpresora doesn't have the right drivesunidades,
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pero la impresora no tiene los controladores correctos,
01:33
so the samemismo is for MarioMario.
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lo mismo le sucede a Mario.
01:36
It's just like, he would like to movemovimiento his left sidelado
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Es como si quisiese mover el costado izquierdo
01:39
of his bodycuerpo, but he's not ablepoder to transmittransmitir the right inputentrada
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de su cuerpo, pero no le es posible enviar la orden
01:43
to movemovimiento his left armbrazo and left legpierna.
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para mover su brazo y su pierna izquierdas.
01:48
So life had to changecambio.
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Tuvimos que cambiar nuestras vidas
01:50
We needednecesario to changecambio our scheduleprogramar.
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y nuestros horarios.
01:52
We needednecesario to changecambio the impactimpacto that this birthnacimiento had
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Adaptarnos al impacto que su nacimiento había tenido
01:58
on our life.
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en nuestras vidas.
02:00
RobertoRoberto D'AngeloD'Angelo: As you maymayo imagineimagina,
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Roberto D'Angelo: Como pueden imaginar,
02:02
unfortunatelyDesafortunadamente, we were not readyListo.
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lamentablemente no estábamos preparados.
Nadie nos había enseñado a lidiar
con este tipo de discapacidad.
02:05
NobodyNadie taughtenseñó us how to dealacuerdo with suchtal kindsclases of disabilitiesdiscapacidades,
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02:09
and as manymuchos questionspreguntas as possibleposible startedempezado
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Empezaron a surgir
02:11
to come to our mindsmentes.
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muchísimas preguntas.
02:13
And that has been really a toughdifícil time.
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Fue un momento muy difícil.
02:16
QuestionsPreguntas, some basicslo esencial, like, you know,
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Preguntas básicas, como,
02:18
why did this happenocurrir to us?
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¿por qué nos pasó esto a nosotros?,
02:20
And what wentfuimos wrongincorrecto?
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¿qué salió mal?
02:22
Some more toughdifícil, like, really,
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Algunas más duras, como,
02:25
what will be the impactimpacto on Mario'sMario life?
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¿cuál va a ser el impacto en la vida de Mario?
02:27
I mean, at the endfin, will he be ablepoder to work?
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Quiero decir, ¿trabajará?
02:28
Will he be ablepoder to be normalnormal?
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¿Llevará una vida normal?
02:30
And, you know, as a parentpadre, especiallyespecialmente for the first time,
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Para un padre, especialmente primerizo,
02:33
why is he not going to be better than us?
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¿por qué no va a poder ser mejor que nosotros?
02:37
And this, indeeden efecto, really is toughdifícil to say,
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Sin duda, es muy difícil de explicar,
02:40
but a fewpocos monthsmeses laterluego, we realizeddio cuenta that
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pero meses después, nos dimos cuenta de que
02:43
we were really feelingsensación like a failurefracaso.
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sentíamos que habíamos fracasado.
02:46
I mean, the only realreal productproducto of our life,
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El único fruto auténtico de nuestras vidas
02:49
at the endfin, was a failurefracaso.
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resultó un fracaso.
02:51
And you know, it was not a failurefracaso for ourselvesNosotros mismos in itselfsí mismo,
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No era un fracaso para nosotros,
02:57
but it was a failurefracaso that will impactimpacto his fullcompleto life.
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sino un fracaso que afectaría toda su vida.
03:02
HonestlyHonestamente, we wentfuimos down.
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Sinceramente, nos deprimimos.
03:03
I mean we wentfuimos really down, but at the endfin,
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Nos deprimimos profundamente, hasta que finalmente
03:07
we startedempezado to look at him,
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comenzamos a mirarlo
03:09
and we said, we have to reactreaccionar.
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y nos dijimos: debemos reaccionar.
03:11
So immediatelyinmediatamente, as FrancescaFrancesca said, we changedcambiado our life.
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Inmediatamente, cambiamos nuestras vidas.
03:14
We startedempezado physiotherapyfisioterapia, we startedempezado the rehabilitationrehabilitación,
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Comenzamos la fisioterapia y la rehabilitación,
03:17
and one of the pathscaminos that we were followingsiguiendo
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con un proyecto piloto
03:19
in termscondiciones of rehabilitationrehabilitación is the mirrorespejo neuronsneuronas pilotpiloto.
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con neuronas espejo.
03:22
BasicallyBásicamente, we spentgastado monthsmeses doing this with MarioMario.
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Pasamos meses enteros haciendo esto con Mario.
03:26
You have an objectobjeto, and we showedmostró him
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Le enseñábamos
03:29
how to grabagarrar the objectobjeto.
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cómo agarrar un objeto.
03:31
Now, the theoryteoría of mirrorespejo neuronsneuronas simplysimplemente saysdice
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La teoría de las neuronas espejo explica que
03:34
that in your brainssesos, exactlyexactamente now, as you watch me doing this,
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en sus cerebros, ahora mismo,
mientras me ven,
03:38
you are activatingactivando exactlyexactamente the samemismo neuronsneuronas
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están activando las mismas neuronas
03:40
as if you do the actionscomportamiento.
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que se activarían si realizaran la acción.
03:44
It looksmiradas like this is the leadinglíder edgeborde in termscondiciones of rehabilitationrehabilitación.
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Parece ser el mejor tratamiento de rehabilitación.
03:48
But one day we foundencontró that MarioMario
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Pero un día descubrimos que Mario
03:51
was not looking at our handmano.
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no estaba mirando nuestras manos.
03:55
He was looking at us.
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Nos estaba mirando a nosotros.
03:57
We were his mirrorespejo.
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Nosotros éramos su espejo.
04:00
And the problemproblema, as you mightpodría feel,
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Y el problema, como podrán adivinar,
04:02
is that we were down, we were depressedDeprimido,
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era que estábamos deprimidos,
04:04
we were looking at him as a problemproblema,
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y lo veíamos como un problema,
04:06
not as a sonhijo, not from a positivepositivo perspectiveperspectiva.
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no como un hijo, no desde una perspectiva positiva.
04:11
And that day really changedcambiado our perspectiveperspectiva.
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Y ese día cambió nuestra perspectiva.
04:14
We realizeddio cuenta that we had to becomevolverse
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Descubrimos que debíamos ser
04:18
a better mirrorespejo for MarioMario.
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un mejor espejo para Mario.
04:20
We restartedreiniciado from our strengthsfortalezas,
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Comenzamos desde nuestras fortalezas.
y desde las suyas.
04:22
and at the samemismo time we restartedreiniciado from his strengthsfortalezas.
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04:26
We stoppeddetenido looking at him as a problemproblema,
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Dejamos de verlo como un problema,
04:29
and we startedempezado to look at him as an opportunityoportunidad to improvemejorar.
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para verlo como una oportunidad para mejorar.
Y este fue el verdadero cambio.
04:33
And really, this was the changecambio,
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04:36
and from our sidelado, we said,
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Nosotros nos preguntamos:
¿qué fortalezas podemos enseñarle a Mario?
04:39
"What are our strengthsfortalezas that we really can bringtraer to MarioMario?"
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Nuestras pasiones.
04:42
And we startedempezado from our passionspasiones.
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Mi epsosa y yo
04:43
I mean, at the endfin, my wifeesposa and myselfmí mismo
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somos muy diferentes,
04:45
are quitebastante differentdiferente,
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pero tenemos muchas cosas en común.
04:46
but we have manymuchos things in commoncomún.
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04:49
We love to travelviajar, we love musicmúsica,
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Nos encanta viajar, la música,
04:51
we love to be in placeslugares like this,
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venir a lugares como TED,
04:53
and we startedempezado to bringtraer MarioMario with us
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y comenzamos a traer a Mario
para enseñarle lo mejor.
04:55
just to showespectáculo to him the bestmejor things that we can showespectáculo to him.
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Este es un video breve de la semana pasada.
04:59
This shortcorto videovídeo is from last weeksemana.
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No estoy diciendo que...
05:05
I am not sayingdiciendo --
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(Aplausos)
05:06
(ApplauseAplausos) —
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05:08
I am not sayingdiciendo it's a miraclemilagro. That's not the messagemensaje,
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No estoy diciendo que sea un milagro.
Ese no es el mensaje,
05:11
because we are just at the beginningcomenzando of the pathcamino.
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porque recién comenzamos el camino.
Pero queremos compartir con ustedes lo que aprendimos,
05:13
But we want to sharecompartir what was the keyllave learningaprendizaje,
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05:17
the keyllave learningaprendizaje that MarioMario drovecondujo to us,
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lo que Mario nos enseñó:
05:19
and it is to considerconsiderar what you have as a giftregalo
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considerar lo que tenemos como un regalo,
05:22
and not only what you missperder,
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y no considerar lo que no se tiene,
perder algo es una oportunidad.
05:26
and to considerconsiderar what you missperder just as an opportunityoportunidad.
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Este es el mensaje.
05:30
And this is the messagemensaje that we want to sharecompartir with you.
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Por eso que estamos aquí.
05:33
This is why we are here.
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05:37
MarioMario!
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¡Mario!
05:39
And this is why --
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Y esta es la razón...
05:40
(ApplauseAplausos) —
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(Aplausos)
05:45
And this is why
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Por eso decidimos
05:50
we decideddecidido to sharecompartir the bestmejor mirrorespejo in the worldmundo with him.
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compartir el mejor espejo con él.
05:56
And we thank you so much, all of you.
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Μuchísimas gracias a todos.
FF: Gracias.
RD: Gracias. Adiós.
05:59
FFFF: Thank you.
RDRD: Thank you. ByeAdiós.
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(Aplausos)
06:01
(ApplauseAplausos)
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06:05
FFFF: Thank you. (ApplauseAplausos)
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FF: Gracias. (Aplausos)
Translated by Mariela Rodio
Reviewed by Daniel Sainz

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ABOUT THE SPEAKER
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.

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.

 

More profile about the speaker
Roberto D'Angelo + Francesca Fedeli | Speaker | TED.com