Barcelona PID Foundation Annual Report 2018
Barcelona PID Foundation Annual Report 2018
FUNDACIÓ BARCELONA PER LES INMUNODEFICIÈNCIES PRIMÀRIES Registre de Fundacions de Catalunya Nº. 2859 CIF: G66351933 Fiscal address Av. Diagonal 467, 5th 2nd, 08036. Barcelona Tel: +34 934 893 140 Website www.pidfoundationbcn.org Contact pid_barcelona@pidfoundationbcn.org
INDEX
LETTER FROM THE PRESIDENT
Page 8
1. ABOUT US
Page 12
WHAT ARE PID? WHO ARE WE? FOUNDATION BOARD MISSION, VISION, GOALS FINANCIAL INFORMATION
2. LINES OF WORK
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RESEARCH TRAINING AND EDUCATION AWARENESS PATIENT CARE MANAGEMENT
3. ACTIVITIES 2018
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INSTITUTIONAL RELATIONSHIPS SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING TRAINING AND EDUCATION SOCIAL SUPPORT, I HAVE PID. I AM NOT ALONE PROJECT RESEARCH SUPPORT FOR ACTIVE CAMPAIGNS MEDIA & SOCIAL MEDIA
4. FRIENDS OF BARCELONA PID FOUNDATION
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5. PARTNERS AND ACKNOWLEDGMENTS
Page 70
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Barcelona PID Foundation
LETTER FROM THE PRESIDENT Annual Report 2018
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Letter from the President
Dear and beloved all, I am addressing you again this letter as President of the PID Foundation on the occasion of the presentation of the 2018 annual report corresponding. Often it is only by reading this annual report that we take consciousness of all the work done during the year. It is hard in our day to day to reflect on what this memory is now offering us. Even so, it is very difficult for me to summarize in a letter the immense amount of fantastic activities of the year and even highlight one in particular. For this reason, I encourage you to see the founding video "You are the missing piece" where we explain who we are and we reflect our main objectives with the active participation of patients and professionals. To our Foundation this has been a year that means the beginning of a qualitative leap with the beginning of campaigns of such magnitude as the dissemination of "Blow the bubble! all over the country or the new Health Care Park for children with PID that will become a reality in the coming months at Vall d’Hebron Children’s Hospital.
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Barcelona PID Foundation
I would also like to emphasize the increase in direct investment in research and care for patients and family members that demonstrates that our accounts are in line with our founding goals. It is clear that all this work could not have been developed without a sustained economic growth due to the collaboration of more and more people and entities and an efficient and transparent management of resources. And neither would it be without the friends of the Foundation, who help us spread PID to society with their tireless work. We invite you all to join our campaigns and become "the missing piece". Our social networks boil and grow on followers. Follow us and you will be able to keep up-to-date on all our work. Thank you very much all to make it possible.
Pere Soler Palacin President BCN PID Foundation
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Barcelona PID Foundation
ABOUT US Annual Report 2018
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1. About Us
BCN PID FOUNDATION WE ARE THE FIRST FOUNDATION IN SPAIN TO PROMOTE RESEARCH AND COMPREHENSIVE CARE FOR PATIENTS WITH PRIMARY IMMUNODEFICIENCIES.
What are PID? Primary immunodeficiencies (PID) are a group of more than 400 genetic diseases caused by quantitative and/or functional defects in the immune response that occur predominantly in childhood. They are considered to be rare diseases because they affect 1 in 2,000 live births. Boys and girls with a PID are more susceptible to severe infections, autoimmune disorders, cancer and allergies. The most severe form is Severe Combined Immunodeficiency (SCID), also known as bubble baby disease.
The most serious forms of PID mainly affect children.
Who are we? The Barcelona PID Foundation (BCN PID Foundation) is a non-profit organization established in 2014 as an initiative to improve paediatric care for PID patients and associated complications. It is made up of health professionals and patients’ family members. It is registered in the Government of Catalonia Registry of Foundations, entry number 2,859. The Foundation performs its functions mainly in Catalonia, although it can act in the rest of Spain, as well as on an international level.
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Barcelona PID Foundation
FOUNDATION BOARD HEALTHCARE PROFESSIONALS AND PATIENTS JOIN FORCES FOR PID.
Board of directors The board is composed of 5 members, whose function is to accomplish the Foundation’s goal and ensure proper management of the Foundation’s assets.
Dr Pere Soler Palacin President BCN PID Foundation
Ms Carlota Villar Amer Vice president
Dr Andrea Martín Nalda Secretary
Ms Aurora Fernández Polo Treasurer
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Dr Concepció Figueras Nadal Member
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1. About Us
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BOARD OF DIRECTORS BCN PID FOUNDATION TEAM
Barcelona PID Foundation
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1. About Us
OUR VALUES RESEARCH, TRAINING AND COMPREHENSIVE CARE ARE THE PILLARS OF OUR WORK.
Mission
Goals
The mission of the BCN PID Foundation is to provide support for PID and to raise awareness, promote research and care for patients with PID and their families.
1 To promote excellence in the knowledge, study, research and awareness of any PID in paediatric patients.
Vision The vision pursued by the BCN PID Foundation is for children with PID to have a better quality of life during the progression of the disease and to try to encourage social support to achieve this.
2 To support comprehensive healthcare for patients with PID and improve their quality of life through informative, educational, and clinical advice and social assistance campaigns. 3 To enable and facilitate interdisciplinary links between healthcare professionals, research groups and patient and family associations.
HEALTHCARE PROFESSIONALS
Hospitals
Pharmaceutical industry
Society
Barcelona PID Foundation
Other foundations and associations
PATIENTS AND FAMILY MEMBERS
RESEARCHERS
Public and private organizations
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Barcelona PID Foundation
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1. About Us
FINANCIAL INFORMATION BCN PID FOUNDATION IS COMMITTED TO RESPONSIBILITY, EFFICIENCY AND TRANSPARENCY REGARDING ITS INCOME.
Funds raised at 2018 WHO HAS SUPPORTED US FINANCIALLY? The majority of our income came through private funding, from private companies or social enterprises such
as the “La Caixa” Foundation, among others. Funds from campaigns and individual donations have remained stable and make up 30% of all income.
1% 52%
La Caixa Private Donations 11% Campaigns
Donations from Private Laboratories Donations from Individuals
17%
Official Donations
Total Income 2018
116.115,41€
19%
We have a commitment to transparency and good governance of the Foundation. Therefore, in 2018 we submitted our accounts to GM Auditors to undergo an accounting audit. Likewise, the financial report on aid granted
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by the “La Caixa” Foundation to the project I Have PID. I Am Not Alone. was also audited by KPMG. Both audits gave our accounts a positive report.
Barcelona PID Foundation
Expenses 2018 USE OF RESOURCES. In 2018, most of the financial resources were allocated to the psychosocial care project I Have PID. I Am Not Alone. and research through an agreement with the Vall d’Hebron Institute of Research
(VHIR), including hiring a psychologist and a research coordinator. Financial resources were also allocated in direct aid to families to cover basic needs and for dissemination actions with a progressive increase of this budget item each year.
1% 63% 9%
Research/Care (VHIR research agreement) General Expenses
11%
Dissemination
Aid for families and patients
Training 14% Total Spending 2018
108.945,53€ Aims for 2019 The Foundation’s goals for 2019 will focus on consolidating the psychosocial care project, with a commitment to expanding group activities and school-hospital coordination. Training and teaching will continue to be one of the Foundation’s fundamental aims so, in 2019, training grants will be extended and collaboration with VHIR will continue in order to hire research staff for the VHIR research group Infection in Immu-
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nosuppressed Paediatric Patients. The main dissemination and patronage campaign in 2019 will be Blow the Bubble! (Bufa la Bombolla), a project that includes various events held all over Catalonia. Furthermore, the Foundation will carry out a new project to make the Infusion Centre a reality for PID children, with collaboration from other entities and organizations.
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LINES OF WORK Annual Report 2018
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2. Lines of work
INTERNAL WORK OF THE BCN PID FOUNDATION Research
Patient care
We work to support research activities to improve scientific advances and knowledge of PID and early diagnosis of the most severe forms of PID.
We work to improve comprehensive healthcare for PID patients and we offer support programmes and expert medical advice for patients and relatives, and patients’ associations.
PROJECTS Support for newborn screening for SCID and early diagnosis of other PID. Optimization of immunoglobulin replacement treatment. Next-generation genetic studies for PID. The PIDCAP project – early diagnosis of PID at primary care centres.
PROJECTS Social support: per diems and transport for PID patients and their families. Psychological support for patients and relatives. Adapting spaces for patient healthcare. School projects.
Training and education Management We promote PID training for doctors, students and researchers. We collaborate on programmes for health education and clinical counselling in PID and related infectious complications on a national and international level.
Various Foundation projects and functions are coordinated by our staff to improve operations and help achieve our goals.
PROJECTS National and international training grants. Research grants. Educational talks.
Awareness We design information and communication advertising strategies to raise awareness of PID and their infectious complications. PROJECTS Support for World Primary Immunodeficiency Week (WPIW). Awareness-raising, social and fundraising events.
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Barcelona PID Foundation
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Barcelona PID Foundation
2018 ACTIVITIES Annual Report 2018
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3. 2018 Activities
INSTITUTIONAL RELATIONSHIPS NATIONAL AND INTERNATIONAL TEAMWORK FURTHERS OUR WORK.
JMF Coinciding with the 2018 Football World Cup, held in Russia, the Jeffrey Modell Foundation (JMF) launched a tournament called World Cup Sweet 16 Bracket Tournament. Participants had to predict which national team would win each phase using the 10 Warning Signs poster translated into each language. Our World Cup Sweet 16
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Bracket Tournament presentation got the highest marks and JMF gave us a $250 grant. We used this grant to fund an award for a patient with PID in the field of sports and healthy habits. This award went to Lola, who will be able to do a weekly adapted swimming activity thanks to the help received from JMF.
Barcelona PID Foundation
Vall d’Hebron Barcelona Hospital Campus On 9 November, at the Vall d’Hebron Barcelona Hospital Campus, the 11th seminar on Humanizing Hospitals for Children took place with the motto ‘Humanization is in your hands’. Anna Fàbregas, Foundation coordinator and psychologist, gave a brief talk entitled Comprehensive care programme for paediatric patients with primary immunodeficiencies. Project I Have PID. I Am Not Alone. An excellent presentation sharing the Foundation’s work with all the PID patients and their relatives.
“11th seminar on Humanizing Hospitals for Children” 9 November
“Event thanking volunteers”, 29 November.
On 29 November, the Vall d’Hebron Barcelona Hospital Campus hosted an event thanking volunteers, recognizing all the work done by all the entities that support hospital and patients. It was an emotional, exciting event that sought to encourage all the projects to continue their work to help people in the healthcare arena. BCN PID Foundation joined in on the event and was recognized for its support for PID children in hospital.
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3. 2018 Activities
INSTITUTIONAL RELATIONSHIPS
Other institutions RIPAG members (Representatives for primary immunodeficiencies, autoimmune disorders and auto-inflammatory diseases) met on 14 December in Madrid, Spain, to discuss and work out a greater role for patients in the ERN-RITA working groups. Ms Carlota Villar, vice president of our Foundation, is one of the European representatives for PID in the RIPAG.
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Our patients play a key role in European networks for rare diseases.
Barcelona PID Foundation
SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING Armand Monleón On 24 December, rally driver Armand Monleón visited us at the Vall d’Hebron Barcelona Hospital Campus. Armand has collaborated with the BCN PID Foundation for 3 years and, once again, he wore the Foundation logo during the Dakar Rally to raise awareness of PID. The boys and girls at the Hospital welcomed Armand and his motorcycle enthusiastically and even received some gifts from BUFF. Thanks for your support Armand! Armand Monleón raising awareness of Barcelona PID Foundation at Dakar 2019.
New website
World Rare Disease Day
On 11 January, we launched our new website thanks to a Jeffrey Modell Foundation Win grant. We encourage you to visit our website via the following link: www.pidfoundationbcn.org
On 28 February, World Rare Disease Day, the Vall d’Hebron Barcelona Hospital Campus hosted a session for patients’ associations and various professionals. Over the course of the day, we talked about issues such as ERN (European Reference Networks), the various projects that are being carried out and international studies on rare diseases. To raise visibility of rare diseases, we joined the Show your rare initiative of the Rare Disease Day Association, which asked people to post a photo on social media with their hands open like a butterfly.
Patients and professionals at “Fem pinya, fem recerca” event
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3. 2018 Activities
SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING
World Primary Immunodeficiencies Week (WPIW) World Primary Immunodeficiencies Week (WPIW) took place from 22 to 29 April, and we hosted various events to raise awareness of these rare diseases. INSTITUTIONAL VIDEO: YOU ARE THE MISSING PIECE. We launched the video entitled You are the missing piece, in which PID patients, relatives and professionals, as well as Foundation volunteers, brought to life this short clip that describes our Foundation and reflects our main goals. Additionally, the artists and creators of the video are also part of the PID community, which reinforces the work we do. All of us here at the Foundation want to thank the participants and ask you to share it! 1 PID INFOGRAPHICS: During WPIW2018, in the entrance to the children’s hospital at the Vall d’Hebron Barcelona Hospital Campus, we exhibited our newly created PID infographics. Generally, when a patient is diagnosed with PID, they are given loads of information that can be difficult to understand. BCN PID Foundation, through a Jeffrey Modell Foundation Win grant and support from Robopep, has created this educational material to be given to parents, relatives and patients at the time of diagnosis to make it easier and more understandable. 2
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WORLD PI WEEK CAMPAIGN STARS. This year, World PI Week launched Campaign Stars, seeking examples of inspirational commitment or exceptional impact in the world of PID. We are very happy to announce that Dr Pere Soler, paediatrician at the Vall d’Hebron Barcelona Hospital Campus and president of our Foundation, was chosen as one of the most committed and dedicated healthcare professionals in the field of PID. 3 CLARET SCHOOL FROM SABADELL, WITH THE BCN PID FOUNDATION. Claret school in Sabadell hosted a charity festival to raise students’ awareness while raising funds for PID research. On 16 May, we received a check for all the funds raised, which will go to support research projects. 4 SOLIDARITY MATCH U.E. CASTELLDEFELS. On 22 April, a solidarity football match organized by UE Castelldefels took place. It was a local duel against Official Santfeliuenc FC, with all revenue (tickets, rides and contributions made at the booth with information and gifts from different shops) going to our Foundation. 5 WORLD PI WISHES. During WPIW 2018, PID patients, relatives and health professionals joined the Jeffrey Modell Foundation World PI Wish campaign writing their wishes on stars. All of us here at the BCN PID Foundation hope they come true! 6
Barcelona PID Foundation
4 Escola Claret in Sabadell with BCN PID Foundation 1 Institutional video: "You are the missing piece" 5 Players from solidarity match U.E. Castelldefels
2 PID infographics in entrance to Hospital 3 World Pi Week Campaign Stars
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6 Collage of wishes for World PI Wishes
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3. 2018 Activities
SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING
Christmas Solidarity Fair Music and Sport On 2 December, the five-day 5th annual Christmas solidarity fair drew to a close, after five days of charity sales of all kinds of products. This 5th edition was a great success and all the funds raised went to our Foundation to fund research, training and comprehensive care for children affected by PID. We would like to thank all the volunteers who helped us make the fair possible, to all the brands that helped us by donating products, and to Merc & Cia, who gave us a lovely space that felt like home. Thanks to all: Chocolates Solé, Molis&Co, Petit Plaisir Bombones, Fundació Vallformosa, Cava Colet, Amer Gourmet, Zabriskie, Turris, and many others.
WOMEN’S PADEL WEEK: Women’s Padel Week, a charity padel tournament with a lot of surprises and parallel activities, took place from 28 May to 3 June. All the money raised was donated to our Foundation and the DGeneración foundation. One of the activities during Women’s Paddle Week was the charity concert Monica Green gave on 30 May. Sala Bikini in Barcelona was filled with an audience excited to listen to the extraordinary voice of the American singer who, backed by an exquisite band, performed the best, most emblematic soul, funky and reggae covers of all time. Thank you very much to the organization to make it possible and to all of you who came out! 1 RUNNING 1900 FUNDRAISING: On 3 April, RCD Espanyol Barcelona football club gave us a check for €4,230, which was raised in November 2017 when the Running 1900 solidary race took place at the Cornellà-El Prat stadium. With this donation, we have continued to pursue research projects in PID as well as projects aimed at improving quality of life for patients and relatives. 2 READY, STEADY... PADEL! On 6 October, a padel tournament organized by UE Castelldefels and Padelarium Gavà was held to celebrate the 70th anniversary of the Castelldefels Sports Union. Registration cost €20 plus a voluntary €3 donation to our Foundation. Thank you very much to everyone that make it possible! 3
Products from the fifth Christmas Solidarity Fair
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Barcelona PID Foundation
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CHARITY TOURNAMENT AT ANDRÉS GIMENO TENNIS CLUB (CTAG) The 15th Charity Day was held on 15 December at the Andres Gimeno Tennis Club in Castelldefels. This event featured a tennis tournament and charity dinner organized by Ms Concha Loranca, with support from the Costea family, to benefit 3 entities: PIVI (Proyecto Iniciativa Vida), Càritas Barcelona and the BCN PID Foundation. Thank you very much to the CTAG for your solidarity and for the €3,000 raised for our Foundation, and thanks to all the participants who made it possible! 4 5
2
4
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3 Poster from tournament held by UE Castelldefels and Padelarium Gavà to celebrate the 70th anniversary of Unió Esportiva Castelldefels.
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3. 2018 Activities
SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING
Charity Dinner at Tibu-Ron beach Club On 2 September, the third edition of the charity dinner at the Tibu-Ron Beach Club took place in Castelldefels. More than 100 people attended and enjoyed the solidarity menu to benefit our Foundation. A perfect plan to bid farewell to the summer and enjoy a day by the sea with friends and family. The night was full of solidarity, gifts, raffles and good company.
Summer-end dinner at Tibu-Ron Beach Club
We received a â‚Ź3,000 check to help us to continue with our projects to improve quality of life for PID patients and to push forward research into these rare diseases. On 2 September 2019 we will be hosting the latest of these solidarity dinners! Thank you very much Tibu-Ron Beach Club for your ongoing support!
Cheque for â‚Ź3,000 raised at 2017 dinner
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Barcelona PID Foundation
Turris Solidarity Christmas Cookies To celebrate Christmas, our friends at Turris created and sold their Solidarity Christmas Cookies. All the money raised was allocated to the BCN PID Foundation, to continue research in the PID arena.
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3. 2018 Activities
TRAINING AND EDUCATION WE ARE COMMITTED TO TRAINING THE PROFESSIONALS WHO CARE FOR PID PATIENTS IN ALL AREAS TO FACILITATE EARLY DIAGNOSIS.
Infographics and educational material
Example of an infographic for family members after diagnosis.
When a patient is diagnosed with PID, they are given loads of information that can be difficult to understand. BCN PID Foundation, through a Jeffrey Modell Foundation Win grant, has created educational material to be given to parents, relatives and patients at the time of diagnosis to make it easier and more understandable. These include information on the immune system, the various parts of the immune system, examples of PID and the most common PID treatments, such as treatment with gammaglobulin or bone-marrow transplants. These infographics are now available in pdf format on our website. We have already started using the PID infographics with children with PID and their relatives who receive care at the Vall d’Hebron Barcelona Hospital Campus. These materials are very
helpful for them and allow them to take their diagnosis onboard in a friendly, easy, more understandable way. Thank you very much to the Jeffrey Modell Foundation and Robopep for making this possible! Furthermore, on 24 April we published some informative brochures about the different treatments for ADA deficiency, with the help of patients’ relatives and expert health professionals. ADA deficiency is one of the most frequent forms of severe combined immunodeficiency (SCID). The initial presentation includes recurrent fungal, viral and bacterial infections, low blood lymphocytes, slow growth and neurological disorders. These brochures are available in a three-fold format to be given to parents at the time of the diagnosis. You can find them in pdf format on our website.
Informative brochures about the different treatments for ADA deficiency created by the foundation.
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Barcelona PID Foundation
BCN PID Foundation training PID COURSE FOR RESIDENTS AND NURSES. Every year, as part of WPIW, the BCN PID Foundation collaborates to provide primary immunodeficiency courses for residents and nursing staff. This training takes place at the Academy of Medical Sciences and Health of Catalonia and the Balearic Islands in Barcelona. One of our aims is to promote excellence in the knowledge, study, research and dissemination of PID and related infectious complications that may arise in affected paediatric patients.
THE FOUNDATION TRAVELS TO LEIDEN, NETHERLANDS. On 27 September, two members of the Paediatric Infectious Diseases and Immunodeficiencies Unit (UPIIP) travelled to Leiden, Netherlands, to meet with European experts in PID. At the Foundation, we continue working to advance PID research and raise awareness of these rare diseases.
PID course for nursing staff 2018
Biannual meeting of P-CID Observational Study in Leiden (Netherlands). September 2018
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3. 2018 Activities
TRAINING AND EDUCATION
Courses, Meetings and Conferences
1st Paradigm Forum - Shire in late January 2018
1st PARADIGM FORUM – SHIRE: At the end of January, more than 120 health professionals gathered in Barcelona to train and share knowledge about rare diseases that affect the immune system. The 1st Paradigm Forum was the first one dedicated to talking about these pathologies in Spain, as reported in a statement by Shire, the company organizing the event. Participants included doctors, nursing staff and patients’ associations such as the BCN PID Foundation. From the UPIIP (http://www.upiip.com), three professionals participated as speakers, with the following talks: Psychological Help for Caregivers and Patients with Primary Immunodeficiencies, by Anna Fábregas; Pulmonary Comorbidity and Primary Immunodeficiencies, by Dr Andrea Martín; and Update on Paediatric Warning Signs, by Dr Pere Soler. VHIR SEMINAR – BONE-MARROW TRANSPLANTS IN PATIENTS WITH PID: On 17 April, Dr Andrew Gennery (Great North Children’s Hospital - Institute of Cellular Medicine - Newcastle University) talked about bone marrow transplants in PID patients, at this year’s PID VHIR Seminar.
Bone-marrow transplants for PID patients. Dr Andrew Gennery.
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Barcelona PID Foundation
8TH SYMPOSIUM ON PRIMARY IMMUNODEFICIENCIES IN BRATISLAVA: On 25 April, the 8th Symposium on Primary Immunodeficiencies took place in Bratislava, and Dr Pere Soler, president of the Foundation, participated in this meeting with the talk Newborn Screening for SCID. A Pioneering Initiative in Europe. The content of the talk was early PID diagnosis with special emphasis on screening for severe combined immunodeficiency (SCID) in newborns. This symposium is part of the J project run by the European Society for Immunodeficiencies. ESID 2018 MEETING: From 24 to 27 October, several PID professionals from the Vall d’Hebron Barcelona Hospital Campus participated in the yearly Meeting of the European Society for Immunodeficiencies (ESID, https://esid. org/) in Lisbon. It was a great opportunity to learn about the latest news in these rare diseases and to strengthen ties between the PID community and various international experts. Plus, they all participated in the meeting, presenting posters, and Dr Pere Soler gave a talk entitled Beyond Newborn Screening: Advances in Diagnosis and Treatment from Birth to Childhood. We took this opportunity to congratulate Dr Jacques Rivière for having won the best e-poster award in the Diagnostics category and Dr Clara Franco, who was elected the new president of the ESID Juniors Working Party! MASTER IN ADVANCED IMMUNOLOGY: Dr Pere Soler, president of the Foundation, and Dr Andrea Martín, the Foundation secretary, participated once again as professors of the Master in Advanced Immunology (UB-UAB) in the subjects Immunopathology and Immunodeficiencies and AIDS.
Annual Report 2018
8th Symposium on Primary Immunodeficiencies in Bratislava
ESID congress in October 2018
Master in Advanced Immunology class. (UB-UAB)
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3. 2018 Activities
SOCIAL SUPPORT, I HAVE PID. I AM NOT ALONE PROJECT Results of the I Have PID. I Am Not Alone project The project I Have PID. I Am Not Alone, developed to address the emotional well-being and quality of life of children who suffer from PID, treated 75 patients and 157 relatives in 2018. A total of 714 visits were made to help them adjust to the process of living with a chronic illness and to cover various needs of immunocompromised children and their families. Group activities included a visit to the immunology laboratory and a physical expression workshop, among others. Under the PID in schools programme, we carried out activities at 2 educational centres where some our patients study. The project was part of an integrated support model. It was coordinated by an interdisciplinary team in conjunction with the two entities involved: ACADIP
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Patients
2017
and the BCN PID Foundation and was possible thanks to collaboration from the “La Caixa” Foundation, as well as support from the Government of Catalonia and Barcelona Regional Council. The overall assessment of all participants was very positive. Being able to attend to the psychological and personal needs of patients and their families has helped them better accept the diagnosis and improved adherence to the treatment, which in turn has improved the children’s quality of life.
Comprehensive care for patients and their families is one of the Foundation’s top priorities. 2018
100% 98
75 157
60 50%
25 15 2 0%
Family members
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Individual sessions
Group sessions
Weekly s.
Monthly s. Quarterly/Biann.
Barcelona PID Foundation
PID at school On 28 May, the Foundation team had the opportunity to carry out an activity with the 6th grade students at Mestres MontaĂąa school in Granollers, where a patient with a PID is studying. The goal was to share what Aya and many other children with PID experience and allow her friends and classmates to stand with her in her daily fight against her chronic illness, from a positive, educational, enriching perspective. Imatge 28 On 10 December, the BCN PID Foundation team carried out an activity with the 3rd grade class at Fonlladosa Schools in Malgrat de Mar, where Martina studies. The goal was to share the experiences of Martina and many children like her who live with a primary immunodeficiency (PID). The students could learn what PID are and what daily life is like for those who have one. Thank you Fonlladosa schools for joining the PID in schools programme!
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3. 2018 Activities
SOCIAL SUPPORT, I HAVE PID. I AM NOT ALONE PROJECT
Improving spaces to care for PID patients Thanks to the help of the “La Caixa� Foundation, the project I Have PID. I Am Not Alone, has been able to optimize work and care spaces for PID children by purchasing furniture and new material for the sessions. The goal is to create a more comfortable space adapted to patients that gives them privacy in the psychological support sessions and makes the children feel welcome. We hope these improvements to the physical space will contribute to the welfare of boys and girls with PID, in line with our desire to always put patients first.
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We are working to humanize the spaces where children with PID receive care.
Barcelona PID Foundation
Visit to the immunology laboratory As part of the project I Have PID. I Am Not Alone, we organized a visit with a group of children with PID to the Vall d’Hebron Barcelona Hospital Campus immunology laboratory. The goal was for patients to continue learning how the immune system works in order to help them understand their immunodeficiency diagnosis. They were shown what happens to the blood after it is drawn until it reaches the laboratory; what professionals are looking for in this type of blood tests; and which techniques and devices are used. The children learned these basic concepts by doing various activities in the laboratory. The participants were researchers for a day and had loads of fun.
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3. 2018 Activities
SOCIAL SUPPORT, I HAVE PID. I AM NOT ALONE PROJECT
Patient Advisory Council is born In 2018, the Patient Advisory Council of the Barcelona PID Foundation was set up to advise patients and projects carried out by the BCN PID Foundation. This board will participate in developing patient-care policies and raising awareness of PID, promoting patient participation in Foundation activities and reviewing educational materials and proposing dissemination or fundraising campaigns. On 22 May, the first meeting of the Patient Advisory Council was held with great enthusiasm to help us improve and grow, in order to benefit children with PID.
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On 15 November, the second meeting of the Foundation Patient Advisory Council was held. An assessment of the status of the current campaigns was carried out and all the material provided to patients was reviewed, such as infographics, annual reports, etc. to ensure it is as suitable as possible.
Barcelona PID Foundation
“La Caixa” foundation has awarded us €41,500 for the I Have PID. I Am Not Alone project The “La Caixa” Foundation has awarded us €41,500 for the I Have PID. I Am Not Alone project, which provides psychological support for children with PID and their families. BCN PID Foundation applied for this grant in partnership with ACADIP.
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The signing of this collaboration agreement with “La Caixa” will allow us to carry on with the project from October 2018 to September 2019. The grant is part of the call for projects to promote self-sufficiency and care for the elderly, disabled and ill.
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3. 2018 Activities
SOCIAL SUPPORT, I HAVE PID. I AM NOT ALONE PROJECT
Group workshop for PID patients: Bodies in action Taking advantage of the summer holiday, on Tuesday 24 July, under the project I Have PID. I Am Not Alone, we held a body-building and movement workshop with a group of PID children between 7 and 14 years old. The activity promoted by Maria Mendoza of the Rius de Moviment Association allowed children to explore through games and their body, using emotional and sensory dynamics to learn new ways of interacting and to reaffirm them as a group. All together, an experience they want to repeat!
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Barcelona PID Foundation
The project I Have PID. I Am Not Alone, gets excellent results Patients and families that have benefited from the I Have PID. I Am Not Alone project, gave the care received excellent marks. In order to give patients a voice, 77 assessment questionnaires were given out to patients (over 12 years old) and their relatives in 2018. The opinions of 9 professionals involved in the comprehensive care of immunocompromised patients were also collected to incorporate into the project-review phase, through satisfaction surveys. The results obtained were highly satisfactory (between 4 and 5 out
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of 5) for all the items evaluated, both in terms of general care of the unit and psychological support. Particularly noteworthy is the positive evaluation of the treatment received, the professionalism and the involvement of the team in the work carried out and the guidance that is offered throughout the process. The lowest result was in assessing the suitability of the visit space in all respondents, although it was still over 3.
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3. 2018 Activities
SOCIAL SUPPORT, I HAVE PID. I AM NOT ALONE PROJECT
New agreement for the project I Have PID. I Am Not Alone. We signed an agreement with the Vall d’Hebron Research Institute (VHIR) to carry out the psychosocial support project I Have PID. I Am Not Alone. This project, made possible thanks to the “la Caixa” Foundation, is being carried out by the VHIR research group Infection in Immunosuppressed Paediatric Patients, a European benchmark in research and expertise on these diseases, led by Dr Pere Soler Palacín. Renewing the agreement for the I Have PID. I Am Not Alone project.
Masks for post-transplant PID patients Under the project I Have PID. I Am Not Alone, with support from “La Caixa” and ACADIP, we support children who have had a bone-marrow transplant, offering special fabric masks with children’s drawings when they leave the isolation rooms.
Masks for children after surgery. With support from:
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Barcelona PID Foundation
Virtual reality to foster the welfare of children with PID Virtual reality treatment has been brought into the project I Have PID. I Am Not Alone to promote the psychological well-being of children with PID. By accessing an artificial platform, there are several scenarios with visual and auditory stimuli that the patient perceives as real. In a virtual environment, the brain responds as it would in the real world by triggering emotions and experiences. In mental health, this is used to treat phobias, improve attention span, control anxiety and reduce the symptoms of depression. In terms of quality of life, virtual reality allows patients to escape their condition and improve their emotional well-being; it also makes it easier to tolerate certain treatments and allows doctors to carry out certain tests. We started implementation of the programme with hospitalized patients to allow them to escape the hospital environment and provide them with some moments of satisfaction. We have found that virtual reality allows for a sensory immersion that gives patients an innovative experience with quite an impact. We expect virtual reality to be an additional element to incorporate, adapting in each case to the needs of the patient in order to complement all the work that is already being done.
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3. 2018 Activities
SOCIAL SUPPORT, I HAVE PID. I AM NOT ALONE PROJECT
“La Caixa” Montbau office supports hospitalization of PID children The Barcelona PID Foundation has received an €8,000 grant from “La Caixa” Montbau office. The collaboration between these two entities has been ongoing in recent years, focusing on the project to support hospitalization of children with PID. Thank you very much to “La Caixa” Montbau for making it possible!
SOCIAL HELPS 2016
2017
2018
31
25
25
7 1 0
Travel grants
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Social grants
Per diems
Accommodation grants
Barcelona PID Foundation
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3. 2018 Activities
RESEARCH WE SUPPORT RESEARCH TO IMPROVE DIAGNOSIS AND TREATMENT OF PID PATIENTS.
First bubble baby detected in Catalonia thanks to newborn screening The first bubble baby was detected in Catalonia since newborn screening for the most severe form of PID was included in the beginning of 2017. Thanks to the newborn screening, Severe Combined Immunodeficiency (SCID) patients, known as ‘bubble babies’, can be detected at birth using a blood test. Catching this condition early makes it possible to save their lives and get them into treatment: a bone marrow trans-
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plant. At the BCN PID Foundation, we offer psychological support under the I am not alone. project and we support implementation of newborn screening for SCID in the rest of the state. Thank you very much to everyone who made it possible! Screening is life!
Barcelona PID Foundation
The PIDCAP project, a reality At the BCN PID Foundation, we support the PIDCAP project, an idea of the Paediatric Infectious Diseases and Immunodeficiencies Unit (UPIIP) at the Vall d’Hebron Barcelona Hospital Campus, to detect primary immunodeficiencies (PID) at primary care centres using a computer application. Dr Pere Soler, president of the Foundation, explained on Catalunya Radio and other media how this IT tool works and how useful it is for early diagnosis of PID.
Recomb Project: gene therapy for SCID At the Foundation, we support the RECOMB project, which aims to develop gene therapy for patients with Severe Combined Immunodeficiency (SCID) or bubble babies with RAG1 mutations. The Infection in Immunosuppressed Paediatric Patients research group at the Vall d’Hebron Research Institute (VHIR) participates in the RECOMB project, which is funded by the European Commission’s Horizon 2020 research programme.
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3. 2018 Activities
SUPPORT FOR ONGOING CAMPAIGNS Bufa la bombolla! (Blow the bubble) The Bufa la bombolla! (Blow the bubble) campaign was born thanks to Martina’s parents, a 7-year-old girl with PID. Based on their daughter’s illness and in order to raise general awareness of these little-known conditions, they launched the Bufa la bombolla! campaign. This initiative has raised more than €7,000 for PID research, which has been donated to our Foundation.
+ Info! www.bufalabombolla.org
Help children like Jana - Teaming Would you like to help children with a PID, like Jana? You can with just €1 a month! With this mini-contribution, you will be helping improve quality of life for children with PID. The Help children like Jana teaming, which was started by the Esteve Cols family in 2014, donated €200 to our Foundation in 2018. With these donations, we give out the Jana Esteve grants to attend meetings and training courses dedicated to PID.
+ Info! www.teaming.net/ayudadaninoscomojana
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Barcelona PID Foundation
All with Dídac The All with Dídac campaign was created 5 years ago thanks to the parents of Dídac Gauxax, a child diagnosed with Severe Combined Immunodeficiency (SCID) who has now had a transplant and is healthy. The purpose of this campaign is to raise funds to raise awareness of PID. In the last two years, All with Dídac has raised more than €9,000, which went to award the first Juan Gauxax grant in 2016 (in honour of Dídac’s older brother, who died of SCID 7 years ago) to Dr Jacques Rivière at CHU Sainte-Justine Hospital in Montreal, Canada. This annual grant is intended for training in a hospital or PID specialized centre, in Spain or abroad, for a minimum of 2 months and a maximum award of €1,500. Over the course of 2018, the Gauxax Fuenllana family organized several events, including a solidarity music festival with NUMA MUSIC Imatge 23 and the presentation of the Cuéntame un blues CD-book written by Juan Campello, professor, musician and writer, Imatge 24, among others, raising €3,376.51 in 2018.
+ Info! www.totsambdidac.com
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3. 2018 Activities
MEDIA AND SOCIAL MEDIA
First bubble baby in Catalonia detected thanks to newborn screening. The first bubble baby was detected thanks to the newborn screening. All babies are given this test within 48 hours of birth, diagnosing up to 22 illnesses, but only in Catalonia. SCID testing is done throughout Europe. TV3 talked to this family and the physicians and researchers involved. Find the notice at www.ccma. cat/tv3/alacarta/telenoticies/
We share the work being done to improve understanding of PID.
‘Rare’ diseases have a long way to go to be visible - El Punt Avui Do you want to know more about the campaign Bufa la Bombolla (Blow the bubble)? Martina’s mother, Núria, tells us about it in the following interview in the newspaper El Punt Avui published on 29 January. Find the notice at www.elpuntavui.cat
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Barcelona PID Foundation
The palliatives, in "Sense Ficció" On Tuesday 30 at 9:55 p.m., TV3 released The Palliatives, a film featuring Marta, a patient from the UPIIP (www.upiip.com) at the Vall d’Hebron Barcelona Hospital Campus. This story about dignity, love and hope follows a palliative care team in Nou Barris, made up of seven women, who apply a ground-breaking programme created in Vic almost 30 years ago and that has become a global benchmark.
The PIDCAP project: A new computer application allows for early detection of PID at primary healthcare centres (CAP). The tool, which was born out of an idea of the Paediatric Infectious Diseases and Immunodeficiencies Unit (UPIIP) at the Vall d’Hebron Barcelona Hospital Campus, is part of the Primary Care Clinic Station and is an example of collaboration between primary care and the hospital. At the BCN PID Foundation, we support the PIDCAP project.
More information about the PIDCAP project is available in the press release at www.ics.gencat.cat or in the interview with Catalunya Ràdio, www.ccma. cat/catradio/alacarta
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3. 2018 Activities
MEDIA AND SOCIAL MEDIA
Armand Monleón's hospital visit Before the Dakar, the driver from Igualada visited the children at the Vall d’Hebron Barcelona Hospital Campus and supported the BCN PID Foundation, which promotes research and knowledge on infections in immunocompromised paediatric patients.
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Watch the video of Armand Monleon’s visit at www. ccma.cat/tv3/alacarta
Barcelona PID Foundation
Our friends on Social Media On social media, we have seen a great increase in followers on Twitter and Instagram over the past year. 2016
2017
2018
1.779 friends
1.915 friends
2.043 friends (+6,3%)
285 friends
402 friends
507 friends (+20,7%)
149 friends
250 friends
365 friends (+31,5%)
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Barcelona PID Foundation
FRIENDS OF THE BCN PID FOUNDATION Annual Report 2018
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4. Friends of the Barcelona PID Foundation
BECOME A PID FRIEND. YOU’RE THE MISSING PIECE OF THE PUZZLE! In order to raise awareness of PID, we have launched the campaign Become a PID friend. You’re the missing piece of the puzzle, in which well-known people in the world of entertainment, sport, culture, journalism, etc. take a picture with our puzzle piece, showing their support for our Foundation and for children with PID. This year we added 10 new ‘pieces’ and there are already more than 100 Friends of the BCN PID Foundation committed to our goals.
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Barcelona PID Foundation
Jordi Hurtado - Journalist and TV presenter.
Dr. Andrew Gennery - Clinical reader in Paediatric Immunology and Haematopoietic Bone Marrow Transplantation, Great North Children’s Hospital
Miriam GonzĂĄlez and l'Antonio Garcia - Professional handball players from Club Balonmano Granollers
CIFA Corredor Inmobiliario S.L - Real-estate agency
El Senyor Peix - Music Group
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Ada Parellada - Catalan Chef
Blaumut - Music Group
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4. Friends of the Barcelona PID Foundation
BECOME A PID FRIEND. YOU’RE THE MISSING PIECE OF THE PUZZLE!
First team of the Granollers Women’s Handball Club
First team of the Granollers Men’s Handball Club
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PARTNERS AND ACKNOWLEDGMENTS Annual Report 2018
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5. Partners and Acknowledgments
PARTNERS THANKS TO THE HARD WORK OF MANY INDIVIDUALS AND ORGANIZATIONS, WE CAN CARRY OUT OUR PROJECTS.
Institutions, Hospitals and Research Institutes
Vall d’Hebron Barcelona Hospital Campus
Ministry of Health. Government of Catalonia
Barcelona Regional Council
Societies, Foundations and Patients’ Associations
Jeffrey Modell Foundation
ACADIP
ESID
Companies and other private entities
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Obra Social “la Caixa”
Cuckoo Fruits
Bao Bab
Elias Mora
Colet
Amer
Xarcuteria Subirats
Boxets
Bramona
Barcelona PID Foundation
Pago De Los Capellanes
Tibu-Ron Group
RCD Espanyol
Som-hi!
Chocolates Solé
Molis&Co
Petit Palisir
Fundació Vallformosa
Natura
Turris
Ona Gràfica
Larousse
Autolica
Unió Esportiva Castelldefels
Club de Tenis Andrés Gimeno
Pharmaceutical Industry
CSL Behring
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Grifols
Takeda
Binding Site
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5. Partners and Acknowledgments
ACKNOWLEDGEMENTS WE WOULD LIKE TO TAKE THIS TIME TO REMEMBER AND THANK EVERYONE WHO HAS SUPPORTED US IN OUR ACTIVITIES AND JOINED US IN OUR FIGHT AGAINST PID.
Thank you all! Susana Melendo – Jacques Rivière – Natàlia Mendoza – Família Gauxax Fuenllana – Família Esteve Cols – Família Costea García – Roger Colobran – Núria Murtra– Mónica Espadaler – Elena Sensat – Irene Ortiz – Clara Franco – Janire Perurena – Anna Fàbregas – Marina Garcia – Aina Aguiló – Àlex Pinós – Vicki & Fred Modell – Boxets – Míriam González – Saida Ridao – Sònia Solà – Família Boix Tomás – Grup Tibu-Ron – Manel Pousa – Ignasi Fábregas – Eunice Blanco – Armand Monleón – Blanca Brun – Família Casanovas Mestre – Consuelo Duran – Mª José Amer – Montse Recasens – Mº Jesús Amer – Isa Domenech – Família del Hoyo Moraleda – Mariana Moro – María Luz Villar – Poble de La Jana – Poble de Vinaròs – Jordi Hurtado – Blaumut – El Senyor Peix – Ada Parellada – CIFA CORREDOR INMOBILIARIO S.L. – Antonio Garcia Robledo – Primer equip del Club Balonmano Granollers femení – Primer equip del Club Balonmano Granollers masculí – Dr. Andrew Gennery – Família Bertran Queraltó – Escola Mestres Montaña de Granollers – Escoles Fonlladosa de Malgrat de Mar – Maria Mendoza – Associació Rius de Moviment – Padelarium Gavà – Club Tennis Andrés Gimeno (CTAG) – Concha Loranca – Javier Carreras – Pep Boix – Escola Claret de Sabadell – U. E. Castelldefels – Merc&Cia – Monica Green – Women Padel Week – Laboratori d’immunologia de Vall d’Hebron – Oficina Caixa Montbau – Allakinda…
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Barcelona PID Foundation
You are the missing piece! Collaborate with the project! Donations' account number: ES16 2100 0764 3902 0019 4562
Find us, Av. Diagonal 467, 5th 2nd, 08036. Barcelona Tel: 934 893 140, from 9 to 18, Mon - Thu.
or contact us! pid_barcelona@pidfoundationbcn.org www.pidfoundationbcn.org