The King Baudouin Foundation in Figures Working Together for a Better Society
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Spring 2018 European foundations are preserving cultural heritage for future generations Under the Honorary Chairmanship of HM Queen Mathilde www.kbs-frb.be • www.europe-kbf.eu • www.africa-kbf.org • www.kbfcanada.ca • www.kbfus.org • www.kbfcanada.ca • www.africa-kbf.org • www.europe-kbf.eu www.kbs-frb.be Brussels X, P309439 Editorial Table of contents 2 Editorial Luc Tayart de Borms Dossier ‘Your health’ > Managing Director 3-7 3 Living with dementia without stigma 4-5 Researchers, academics and patients in dialogue for priority setting in health Foreword 6-7 Rare diseases: the story of Aurélien 8-9 BruVoices: how to make Brussels Putting people at the heart of projects the attacks two years ago, to see how into a resilient city? Certain foundations focus on they feel about their city and to hear their supporting environmental groups, hopes and fears (p. 8-9). The need to 10-11 Prince Albert Fund exports business talent others target initiatives aimed at acknowledge and act on people’s feelings reducing social inequalities, while is also highlighted in the most recent New 12-13 Meetings between citizens and refugees some prefer to spend their time and Pact for Europe report, which underlines facilitating social integration money defending culture. Here at the how citizens cannot be ignored if the King Baudouin Foundation, we prefer, European Union is to emerge from the 14-15 Having African roots and living in Belgium: as is made clear by the breadth of threats and challenges of populism that facts & figures articles in the latest edition of our have blighted its member states in recent 16-17 European foundations are safeguarding International Magazine, a more holistic years (p.18-19). cultural heritage ‘From Tiepolo to Richter’ approach and believe that different change models can work together to Culture is an important way of creating 18-19 New Pact for Europe: a plan create a better society for everybody. a sense of belonging among people. It for re-energising is about shared experiences, bringing 20-21 Citizens making their voices heard: Key to this approach is our emphasis on different people together to share a Civitates Fund ensuring that people are at the heart of the common interest. To this end, KBF in the projects supported by KBF. We therefore framework of the European Foundation 22-23 Isaan Fund encourages young welcome initiatives that give a broad Centre AGA, will host an exhibition as part potential in Thailand range of voices a platform to express of the 2018 European Year of Cultural their opinions, that listen to different ideas Heritage (cover, p. 16-17). 24-25 Our ID and take them into account when making 26-27 KBF Canada - generous donation from final decisions. Policymakers and others With all this interesting news coming out Canada to Gembloux with decision-making powers should not of Europe, it is important not to forget that 28-29 KBFUS – Ene Riisna on the significance of shortcut citizens and ignore their wishes KBF is likewise helping donors in the US music in Estonia and worries. and Canada to put their money to good use and support the causes in which they 30-31 KBFUS – Art: The Rijksmuseum, This attitude is clear in the work we believe. It is particularly heartening to Amsterdam was gifted a photo collection are backing in the field of health, where see the work of KBF Canada, which only Et cetera we are helping to end the ignorance received its fiscal status in September 32 surrounding many rare diseases (p.6-7) 2017 (p. 26-27). and to ensure that biomedical research is determined with the input of patients Many thanks again to all those PUBLISHER: Luc Tayart de Borms and civil society (p. 4-5). who make all this important and rue Brederodestraat 21 extraordinary work possible. B-1000 Brussels, Belgium Meanwhile, in Brussels we have T: +32-2-500 4 555 supported BruVoices, a project set up Luc Tayart de Borms [email protected] • kbs-frb.be to listen to the citizens of Brussels since Managing Director IBAN BE10 0000 0000 0404 BIC BPOTBEB1 The King Baudouin Foundation is an independent, pluralistic foundation EDITORS: Sabine Deboosere, Iadine Degryse CONTRIBUTORS: working in Belgium and at the European and international level. We are Anthony Fletcher, Liz Harrison, Debra Lodoen, Philippa Nuttall Jones, Erika Racquet, Cathy Verbyst PROOFING: Anne Bruwier, seeking to change society for the better, so we invest in inspiring projects Philippa Nuttall Jones, Greta Peirs DESIGN: PuPil PRINTING: and individuals. In 2017 we provided a total of €44 million in support to Bietlot ILLUSTRATIONS: Achim Kukulies, Düsseldorf (p.16b); Alzheimer-Europe – A. Forman (p.3b); C. Azevedo (p.17b); BX Art 2,559 organizations and individuals. The Foundation was set up in 1976, asbl (p.9); C/O Pictoright Amsterdam 2018 (p.17a); Collection on the occasion of the 25th anniversary of King Baudouin's reign. Fondazione Cariplo (Cover); E. Crooÿ (p.12); European Union - E. Ansotte (p.19); Fund Isaan (p.22a, p.22b, p.23); P. Hant (p.8-9); M. Kirubi (p.32b); Kookmet – Cultureghem (p.13); J. Lund (p.5); L. Lupi (p.16c); H. Maertens (p.32a); Melis (p.20); F. Toussaint (p.2, p.3a, p.4, p.6, p.8, p.16a, p.21); Unknown copyright (p. 28-29); E. van der Elsken (p.31); Yingchou Han on Unsplash Follow us on (p.14); Z. Zaitseva (p.7). 2 DOSSIER: YOUR HEALTH Living with dementia in Europe According to Alzheimer Europe there are 8.7 million people living with dementia in the European Union, and this figure is expected to grow due to an aging population. The European Foundations’ Initiative on Dementia (EFID), “ I try to bring a positive involves seven foundations across Europe including the King message that there is a Baudouin Foundation. The initiative supports community-based life to be lived after a Alzheimer diagnosis.” approaches to address challenges linked to dementia, and seeks to build up networks. There is now a community of 32 actors in HELEN ROCHFORD-BRENNAN, European Working Group Europe working together to build a dementia-friendly future. of People with Dementia We spoke with Helen Rochford- a death sentence, and supported Alzheimer’s. I intend to carry on Brennan from the European Working me in telling my family and friends. working as global dementia ambas- Group of People with Dementia After coming to terms with my con- sador for as long as I can.” about the need to reduce the stigma dition, I got involved with research, attached to dementia and achieve a which led me to the newly formed How can attitudes more inclusive Europe. Irish Dementia Working Group. be changed? Shortly afterwards I became the first “The best way is to be visible and to How did you get involved Chair of the group and my quest for talk about the illness. My friends with in dementia advocacy? the rights of people with dementia other conditions, such as Multiple Helen Rochford-Brennan: “When I began.” sclerosis (MS) and Parkinson’s, are was diagnosed with Alzheimer’s, fully integrated into their communi- there were no services for me. There How can one make ties. This is the world I want to live in. was also a great deal of stigma. a difference? I try to bring a positive message I wish someone had been there “By educating the next genera- that there is a life to be lived after to tell me that Alzheimer’s is not tion about what it’s like to live with diagnosis.” ABOUT EFID The European Foundations’ Initiative on Dementia (EFID) is a collaboration platform initiated in 2010 by a group of European foundations. Today, EFID comprises the Atlantic Philanthropies (IE), the Fondation Médéric Alzheimer (FR), the King Baudouin Foundation (BE), the Robert Bosch Stiftung (DE), and the Genio Trust (IE). The initiative is coordinated by the Network of European Foundations (NEF). From 2011 to 2015, a total of €265,000 was awarded to 20 projects in 10 countries. Another 12 organizations – including Het Ventiel from Belgium – were recognized at a ceremony beginning 2018 in Sofia. Read and download KBF’s impact report "I’m still me.” Ten years’ working together to create a dementia- friendly society’ for free on www.kbs-frb.be MORE INFO? www.efid.info • www.nef-europe.org 3 Setting the agenda on health Health and biomedical research agendas are often determined without the input of patients or care givers, which begs the question of whether medical investment is really focused on the most critical areas. To address this, the King Baudouin Foundation recently launched three priority setting pilot projects to assess whether researchers and other stakeholders can arrive at a consensus on the best way forward. Researchers and academics, to grow in certain organs. In each to identify priorities; they also pro- patients and care givers were case, these multi-stakeholder vide an opportunity for each side to brought together in an inclusive exercises demonstrated how high- explain exactly why a certain issue is consultative process designed priority research questions that important to them. to achieve consensus on critical require action can be effectively research priorities. The pilots, discussed and identified. “I attended a KBF-organized work- supported by the KBF Mind the Gap! shop in 2015 on evaluating multi- project, addressed three topics: Tuberous sclerosis complex stakeholder priority setting and this going back to work after a period Professor Anna Jansen from was an eye-opening experience for of incapacity; the use of biobanks University Hospital Brussels, who me,” she says.