Dossier Aladina 2015

Transcription

Dossier Aladina 2015
Making sure kids with cancer never lose their smile
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Who we are
Fundación Aladina is a non-profit
organization created in 2005, but the
initiative began five years earlier when
our president, Paco Arango, decided
to become involved in a project that
would allow him to “get his hands dirty.”
“I wanted to donate my time because
I’ve had been very lucky in my life,” said
Arango. One Wednesday afternoon
in 2001, he made his first visit to the
oncology ward of the Hospital Niño
Jesús and the rest is history.
Today, Fundación Aladina is a reality that, year after year, helps more than 1,700 children and families in
the Hospital Universitario Infantil Niño Jesús, Hospital Universitario Gregorio Marañón, Hospital Cruces in
Bizcaia and many other centers around Spain.
Aladina provides integral support to children, teenagers, and families. We thoroughly believe in the equal
importance of physical and spiritual health, so we provide psychological, emotional, and material assistance.
We have the invaluable help of our wonderful group of volunteers to carry out our mission. Our work helps
children and teenagers learn to adapt to their new situations and their illnesses without losing their joy and
keeping alive their will to get better.
Fundación Aladina is an independent organization with neither political nor religious ties. It is registered in
the Comunidad de Madrid Registry of Charitable Foundations Page 700, 1ª, Volume CCXXVII, sheet: 201-215.
In 2014 Fundación Aladina was approved as the equivalent of a US public charity by the Silicon Valley
Community Foundation and is now eligible for grants from this institution and its collaborators.
In 2007 Paul Newman asked Paco Arango, Aladina’s president, to become a member of the SeriousFun
Children’s Network’s board of directors.
“Thank you Fundación Aladina for these magical moments that help us endure
this illness with joy. You will always be in my heart.”
Sandra, Ex Oncology Patient
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What we do
• Volunteer Work
Aladina has an extraordinary team of more than 45 volunteers that bring magic each afternoon to the
Hospital Niño Jesús and the Hospital Gregorio Marañon. Aladina’s volunteers play a vital role in the
recovery process, as their daily companionship serves as a significant source of support to all the patients
and their families.
Our activities and play therapies aim to strengthen the patients’ will to get better, to help them lose their
fear, to adequately express their emotions, and, above all, to keep smiling through the hardships. After
all, laughter is indeed the best medicine.
All of our volunteer work is coordinated by an outstanding group of professionals, including the Hospitals
Director, coordinator and the foundation’s Psycho-Oncologists. Their work allows the foundation to
better understand the individual needs of the children and teenagers and most importantly to support
them as best as possible and help them to endure the difficult illness day by day.
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What we do
• Teen Room and Children’s Play Area
When children are sick in hospital their usual routines are disrupted and they may be separated from
their family and other familiar people for periods of time. Being able to play while in hospital means that
children can continue an aspect of their normal life.
For this reason, Aladina has dedicated a considerable effort to creating a Teen Room in the Hospital
Niño Jesús and a Children’s Play Room in the Hospital Gregorio Marañón.
The Teen Room is a space exclusively for young people, far away from parents, doctors and health
workers. Here, they can relax, have their personal space, and hang out with other kids their age. The room
is equipped with video game consoles, a television, computers, and all typed of artistic and audiovisual
materials. The room is looked after at all times by volunteers of Fundación Aladina and also has all types
of workshops geared toward this age group.
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What we do
• Improvements and Services
Fundación Aladina has officially turned 10 years old. It has been a significant decade of hard work and
effort that has resulted in substantial investments with one primary goal: to improve the lives of children
and teenagers suffering from cancer.
Our biggest project yet, and undoubtedly the one we are most proud of, has been the Maktub Center
in the Hospital Niño Jesús in Madrid.
At the Hospital Niño Jesús we have
carried out different projects:
• The creation of a Teen Room and the enclosure
of a 70-square-meters terrace on the wing of the
Pediatric Oncohematology Unit
• Free Wi-Fi installation in the Oncohematology
Unit and in the ICU
• The refurbishment of the nursing rooms in the
Pediatric Oncohematology Unit and in the ICU
• The purchase of new furniture for the ICU
waiting room
• The renovation of audiovisual equipment for the
theater
• Several improvements in the Hospital de Día
At the Hospital Gregorio Marañón we
have carried out different projects:
•The complete refurbishment of the Hospital de
Día Pediatric Hematology
•Renovation to the furniture and decoration of
the terraces of the Pediatric Onco-Hematology
Unit
At the Hospital Universitario 12 de
Octubre in Madrid we have completed:
•The purchase of new principal and auxiliary
furniture in the Pediatric Oncohematology Unit
•The decoration of the Pediatric
Oncohematology Unit
At the Hospital Universitario de Getafe in Madrid we have renovated the waiting room of the Pediatric
Oncohematology Unit and began work on a new, modern game room on the terrace of the center that
we will soon open.
At the Hospital Universitario La Fe in Valencia, we have donated six Smart TVs for each of the rooms in
the Pediatric Oncology Transplant Unit.
We also pay special attention to the families with limited resources. As a result, when it’s necessary,
Aladina helps in the acquisition of prostheses, wigs, wheelchairs, and any other expenses related to this
illness. In unique cases, we provide material support requested by the medical team at the hospitals we
work with.
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What we do
• The Maktub Center
Our biggest project yet, and
undoubtedly the one we are most
proud of, has been the Maktub
Center in the Hospital Niño Jesús
in Madrid. It was inaugurated
on February 7th, 2013 with the
purpose of incrementing the
opportunities of successful bone
marrow transplants. With an
investment of 500.000 euros,
Maktub is a pioneering center
in the field of bone marrow
transplants in Spain and is fully
equipped to carry out an average
of 50 transplants a year.
Maktub is a friendly place,
specially designed with chromotherapy and natural light, which seeks to provide the best possible living
conditions to ensure that our brave fighters are able to reside there comfortably.
MAKTUB is the first film written, directed and produced by Paco Arango, President of the Fundación
Aladina. It is based on the story of Antonio, a 15-year-old boy who was looked after by the Fundación
Aladina during his stay in the Hospital Niño Jesús.
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What we do
• Psychological Support
The emotional impact of a cancer diagnosis is extremely difficult to accept
for the children and their families. After more than 10 years of work, at
Aladina, we are aware of the importance of providing psychological help to
our children and teenagers as well as to their parents and siblings.
We thoroughly believe that free and personalized therapeutic care is
fundamental. Aladina counts on various psycho-oncologists in Madrid at the
Hospital Niño Jesús and at the Hospital Gregorio Marañón, and in Bizkaia,
at the Hospital Cruces.
Our experts work closely with our children and teenagers, providing the
adequate tools to help them overcome their fears and concerns. Offering
support and guidance to their parents is also essential, both in the treatment
process and/or in the case of a tragic loss.
Additionally, Aladina has pioneered the creation of Grief Groups for parents
who have lost a child to cancer.
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What we do
“It’s not that the children
say: ‘Thank you for a
wonderful time’,
it’s that they say: ‘Thank
you for changing my life’.”
Paul Newman
Founder of Hole in the Wall
Camps and Barretstown
• Barretstown
Barretstown is a camp founded by Paul Newman, situated in a castle in the hills of Ireland, that each
year welcomes children and teenagers from more than 22 countries around the world. The extraordinary
thing about this camp is that all of the children and teenagers that attend have cancer, or another type
of serious illness. To accommodate this, Barretstown has extraordinary facilities and medical personnel
that allow any child to continue their treatment during their stay, should they require it.
Each year, the Fundación Aladina makes a substantial donation to Barretstown, which enables over 125
Spanish children to attend this camp for one wonderful week, entirely free of charge.
In the spring of 2013, Barretstown opened “The Aladina Center”, a game space for all of the children at
the camp, financed by the Fundación Aladina.
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What we do
• Working With The Palliative Care Unit
The work of the Palliative Care Unit is absolutely essential for children and teenagers who are in the
terminal stages of their illness, so that they may spend their last days in the comfort of their own homes,
surrounded by friends and family.
Professionals in this field have joined forces to create Asociación Porque Viven (www.porqueviven.org)
to support the Pediatric Palliative Care Units. The aim of this group of doctors and nurses is to reduce the
suffering of these children, as well as to improve their quality of life, and offer emotional support both to
them, and their families. Looking after over 150 children in the Madrid region 24 hours a day, their work
is truly exceptional.
The Fundación Aladina works with the Asociación Porque Viven by means of a significant annual donation
to help to support and give continuity to the work of these professionals. In 2013 Aladina donated a
large van-ambulance to the UCPP to facilitate the transportation of doctors and patients. We have also
hired a reliable driver whose assistance is available to the doctors.
• Aladina Scholarships and Research
Three years ago, Aladina decided to create an annual scholarship for all the young physicians at the
Hospital Niño Jesús that are interested in expanding and enhancing their education in the field of
Pediatric Oncohematology. Only doctors at this hospital are eligible for the scholarship; that way, they
have the opportunity to improve their training as they continue to work there. This year, the third Aladina
scholarship will be granted to another professional with the purpose of improving the special care that
admitted children and teenagers receive.
In addition, we have extended the scholarship to the Hospital Vall d’Hebron in Barcelona. This will be the
first year that a young physician there will receive the Aladina scholarship.
In 2013, we also supported an ambitious research project in collaboration with Fundación “Cris Contra
el Cancer,” which was led by Dr. Antonio Pérez Martínez, a researcher at the Hospital Niño Jesús. It dealt
with the use of Natural Killer (NK) lymphocyte cells as a tool to fight childhood cancer.
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What we do
• Physical Activity Program
Numerous studies have shown the
importance of supervised physical
activity throughout the duration of
an illness, as a way to significantly
improve the wellbeing of a patient.
The Fundación Aladina has hired Elena Sosa, a specialist in in
physical activity and sport, so that
patients in the Pediatric Oncology Unit at the Hospital Niño Jesús
can receive personalized exercise
sessions. This way, the children can
exercise in the same place that they
receive their treatment.
On a daily basis patients head to the hospital gym to perform their exercise activities, that have been
previously approved by doctors. On those specially challenging days when the patients don’t feel well
enough to go to the gym or when they need to remain in isolation at the Maktub Center due to their
treatment, Dr. Sosa pays them a visit to take them through their training program. And she’d better not
be late! These children anxiously wait for her arrival, as it allows them to put their hospital routine aside
for a while and to enjoy something fun and different.
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What we do
• Mother’s Milk Bank ALADINA- MGU
The Mothers’ Milk Bank Aladina – MGU project is one of our dearest ones, although it is
very different from the rest of our work. Thanks
to Aladina’s collaboration, the center installed
in the Hospital 12 de Octubre, dispenses the
most nutritious food in the world to hundreds
of premature and sick babies in the community
of Madrid.
In 2014, with the incredible support of an
anonymous generous donor with the initials
“MGU,” the foundation undertook the reform
and expansion of the old milk bank and turned
it into a pioneer center. The new human milk
bank guarantees the delivery of milk to the hospitals 12 de Octubre, De La Paz, Puerta de Hierro, and
Severo Ochoa de Leganés. The objective is to meet the needs of all public hospitals with neonatal units
in the community.
The success of our milk bank would not be possible without the generosity of so many altruistic mothers.
Your hard work doesn’t go unnoticed – thank you!
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Aladina’s Promise
100% of all of the donations that Aladina receives
go to specific support programs for the children and
adolescents with cancer and their families.
All of this is made possible thanks to the generosity of our patrons. Their support covers all of our
administrative costs allowing us to focus our efforts on those who truly need it, the children and
teenagers with cancer.
Every year Aladina is audited by PricewaterhouseCoopers and our accounts are accessible to anyone
who wishes to see them.
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How Can You Help?
Become a
partner
in
www.aladina.org
Text
ALADINA
to 28014*
Call us at:
91.532.93.03
Send us an email:
info@aladina.org
In order to ensure the Fundación Aladina’s continuing work, it is essential for new people to join us
every day in the fight against child cancer , through signing up for membership to the foundation. Any
donation, however small, is a step in the right direction towards ensuring that children with cancer may
keep smiles on their faces.
Our goal is to help the increasing number of children and teenagers suffering from cancer, and to
expand our presence to even more hospitals.
thank you
* Complete donation of 1’20€. Priv. Pol.: www.aladina.org. Service operated by ALTIRIA TIC 902 00 28 98 P.O. Box 36059 Madrid
C/ Tomás Bretón 50-52, 3º Of. 5
28045 Madrid
Tlf.: 91 532 93 03
www.aladina.org
CONTACT: Ishtar Espejo - Director
ishtar.espejo@aladina.org