Dossier Aladina 2015
Transcription
Dossier Aladina 2015
Making sure kids with cancer never lose their smile 1 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 2 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. 3 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. 4 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. 5 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. 6 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. 7 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. 8 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. 9 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. 10 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! 11 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. 12 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: [email protected] 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 [email protected]