[Applause]
I present she looked 12 years old
and is one of the thousand people that
esteem that there is in Spain with skin
butterfly a rare disease that produces
that the skin is extremely fragile and
the slightest touch hit even the
I hug a mother or a push without
want to play with friends can you
produce a wound a blister what
they feel it is as if its as if their
body out a constant burn the
24 hours every day of the year
good morning everyone I introduce myself I am
eduardo campos I am 21 years old and apart
to study audiovisual communication and
journalism at the university rey juan
Carlos from Madrid
I am a volunteer of the debrá association
butterfly skin
as Bethlehem would say the mother of Lucia
so that you understand what the
butterfly skin and do not enter here in
scientific terms lack a
protein the glue that binds
different layers of the skin
so I’m going to ask you to do a
reflection exercise that for about
seconds
we close our eyes and try to get
in the situation of the child with skin
butterfly that we think minimally or that
we get as close as we can to what
that they can feel
we are in a south talk and the
most of us here
we should be young or at least that
mentality
so if you talk here it’s because you are
the present the future because you are the
generation
I am from the generation capable of changing
the social structures because you are the
that you can change society so that
stop hurting minorities
because we live in society why not and
really in society and leave behind the
selfishness because we can make the
disease of one is the disease of
all because together we can fight the
best
together we are stronger and because in
this background race called life
we must run together
when I started volunteering with
16 years old the people who had me
around
my friends my family was surprised and
I still do not understand but I still do not
understand why they were surprised and
spoke of the term volunteering
volunteer everything that has to do with
this here many of you maybe
you are surprised many others we
produce a great indifference
It seems normal but we have to
change it
we have to do so that people do not
be surprised when a friend or a
family says he started doing
Volunteering in an NGO near your house
because at that moment it will be when the
volunteering is normalized and instead
of being 7.9 percent of the
Spanish population that makes some
type of voluntary activity according to
2015 data will be a bigger data and in
that moment is when it really is something
surprising for me volunteering not
it has only meant a change in my form
It is allowed him to be much more
sensitive to social causes
It has allowed me to see from other points
of sight has allowed me to empathize with
those groups that are
discriminated against has allowed me to break
stigmas and leaving behind stereotypes is
very important that between all but bp
do we get past the pre pensa
thoughts we have about other
people but the most important thing is that
could bring something of me to create
a world
maybe we are running the
television and among all of us
we have to add we have to go
every time this is something better
we are the generation z the fed the
generation and we are the generation tots
I am without a doubt the generation of
the communication of social networks
of the new
I have not been able to transmit
communicate and disseminate innate and
you can help many causes already
a lot of NGOs that need it to
reach more people because he ‘s in
our hands get it and between all
we can do it because as Eduardo says
Galeano many small people in places
little ones doing small things can
change the world to Lucía I met her with
16 years when I threw myself into the
Volunteer pool with 16 years
but decided to do it
I needed a place an action one
task beyond my school of my
friends from my house where I can first
exploit a concern that I had and that
I’m sure that you have and
second develop some attitudes and
some skills that we all have but
I also wanted to generate something positive
I wanted to contribute my bit
some cause
that’s how in 2011 thanks to
volunteer service of the community
from Madrid
I discovered that nearby in my house there was
one of the ten stores that the
association butterfly skin has in
Spain
well for five and a half years
He was part of this NGO that looks after
the rights of children and
people with butterfly skin a
rare hereditary genetic disease
chronic is born with her and like
the rest of 7,000 diseases
are classified as rare
characterized because it affects less than
five people five people for each
10,000 inhabitants
thanks to nativity scene I used to be able to know
up close that is to live with skin
half butterfly for you to do
an idea they have between two and three hours
of cures and bandages and nativity scene
besides being the mother of Lucia is the
responsible for the store where I started
volunteer
thanks to donations from companies and
people like you all that is
raises
with that can be used for improvement
of quality of life and to encourage
research to achieve a cure but
volunteering involves work implies
education implies commitment in your
some measure but it implies something is not
look for pure satisfaction for
staff is looking for because we can help
among all and involves a little
we have been for a long time
for many hours in a store
Solidarity classifying clothing labeling
products putting them price but what
most important thing I could do is
to have made known the butterfly skin
have made known a rare disease
and have explained to all people
that entered the store and that
they thought they were entering a store
normal and have explained what
that they could get with a rice with
a purchase by donating or even simply
being there and listening to what they
we counted and what we explained
because what we did is to make known
the disease and most important
explain how they could collaborate but my
little grain of sand is not only
joins 250 people plus 250
grains of sand that form a clock
without them the solidarity stores
they would be totally stopped so
There are 250 people who contribute two three
four hours of your free time to the
week to be inside an NGO and
that for example thanks to that time in
2016 could be billed near
650,000 euros and grace thank you for the
data but he did explain this is because
thanks to this money that supposes the 60
percent of what the
association for a year can be
maintain a health care one
counseling and psychological support
can train other professionals
health that in
on many occasions they do not know
how to make or treat these patients and
The most important thing can be devoted to
the investigation
remember that in Spain our country
Private research is the greatest
patronage of the investigation but be
volunteer to me has not only helped me
on a personal level I could name it
and last names to the people to whom
we are helping allowed me too
take a leap and get to my career
professional
there was a turning point between me
commitment and my professional career and
it was because after a season in
the solidarity shop
I discovered that something had to be improved and
that something was online communication
that’s how a little bit and from
so I am helping the association
in the area of communication and
online strategy
we have achieved that at the beginning of this
May the web of stores
solidarias completes two years more than 26
six hundred thousand people have entered
the Web
in this time and not only that we have
also achieved that we are on facebook
in instagram on google and on foursquare
where they have more than six thousand 100
followers
so for reasons like this I encourage you
that you are part of some
volunteering because we are the soul of
many causes we are the soul of many
ngo and why projects like this
they would be totally unviable without
profile of the volunteer allowed me
also good recently about six
weeks in a job interview I
they asked what to do
volunteering with 16 years that I took out
of that and I was first surprised and
second I replied that it was the best
decision I had made in my life and
I really mean it I say it from the heart what
I say from the heart because it is the decision
that has influenced me most during the
last six years and it has allowed me
know
the world is not only as it is
we know that there is much beyond
our comfort zone and I encourage you to
leave that comfort zone or I’ve
met wonderful people to children
with butterfly skin that have 10 or 12
years as it looked that they give lessons of
life they tell you it’s worth throwing away
down a slide like how this one like
this even though I’m going to hurt
change of being able to have fun for a while with
my friends I have met others
volunteers could share the
same anxieties and what moves us
part of this great family me
has allowed us to get to know other
butterfly skin families thanking
your daily work and most importantly
I have been able to monitor the progress
scientists that are being achieved and that
It is the greatest reward that can be
have because it’s worth our time is what
more valuable than we can give away but the
Hope should never be lost because
as Martin Luther King says it helped
a single person to have hope not
I will have lived in hand for reasons such as
I would like you to be part of
that percentage of the population
Spanish volunteer that
let’s add more than we do not just stay
in that percentage because together we can
make the clock work better and for
more time
you are without a doubt the generation that
must share and build bonds that we
make stronger
you are the ones that you must collaborate without
expect nothing in return the handicaps
they must be shared and because I hope
that you are one of those people
have to surprise us in the future
because at that moment volunteering
it will be normalized
I will not have to give a talk like
this one and because I’m sure that
you have
the time the tools and the
knowledge to get it and to
do it because now is our time
many thanks
[Applause]
[Music]
”
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