The Edgar Stene Prize Jury 2015 – meet the judges Each year, a panel of people with experience or knowledge of rheumatic and musculoskeletal diseases (RMDs) has the honour of judging the annual Edgar Stene Prize competition. This year we welcome our judges who represent the three pillars of EULAR, and who come from a number of different countries across Europe. They are joined by the Chair of the EULAR Standing Committee of People with Arthritis/Rheumatism in Europe (PARE) and the EULAR Vice President, representing PARE who oversee the judging and offer guidance to the overall process. Nele Caeyers, PARE Board member from Belgium and CEO of ReumaNet, is Leader of the 2015 Edgar Stene Prize Jury “Reading and writing are two things that have been extremely important in my life ever since I was a child. Good stories and books offer me an unlimited way into imaginary worlds. Writing gives me the opportunity to clear my head and help others by sharing my experiences. Writing offers you a way to get a grip on things that can be very complicated and demanding. This is why I fully support the Stene Prize competition and I am honoured to be part of the jury. This year’s theme brings back a lot of memories of the time I got my diagnoses of systemic lupus erythematosus (SLE). Unaware of what was happening to me, I put my faith in the hands of a strong team. But soon, I was part of that team. We made decisions together and had lively discussions about treatment options. When I got pregnant, the whole group was equally excited! The role of health professionals can be so much more than only the medical part! I am looking forward to reading inspiring stories from all over Europe!” Dr Caroline Ospelt from Switzerland, Liaison officer EMEUNET, representing the network of young rheumatologists “Serving as a member of the Edgar Stene Prize jury is a unique opportunity for me to get a more personal insight into patient’s sorrow and hopes. Even though being a trained medical doctor, I have worked in basic research for more than 10 years already. Work in the lab can sometimes be frustrating and tedious, in particular when you forget about the actual purpose of this work – namely to create knowledge that brings forward new therapies and a better life for patients. Reading the contributions of last year’s winners reminded me why the long working hours and the endless attempts before an experiments works are worthwhile. I’m really looking forward to reading this year’s essays and to learning about the patient’s views on one of the most central topics in living with RMDs – taking control and working together with health professionals.” Kjerstin Fjeldstad, Norway, Board member of the Norwegian League Against Rheumatism “It is an honour to be a member of the jury for the Stene Prize. I am looking forward to being inspired by the vision applicants have for the future. This year’s theme “Taking control of my life: working together with health professionals to achieve my personal goals” gives the authors an opportunity to look at their lives and how they have reached their personal goals and I look forward to reading essays. I am 61 years old and spondyloarthritis (SpA) has been my friend the last 30 years. I still work, and I do voluntary work as well. I become involved in the Norwegian League Against Rheumatism 30 years ago. I have been a board member and leader in a different part of the organisation. I work at the Norwegian Labour and Welfare Administration. I work full time, but have one day off every week for rehabilitation.” Aïda Verstraeten, Belgium, 2014 essayist and representative of young people with RMDs “I am 19 years old and from Flanders, the Dutch speaking part of Belgium. I am a language student, studying the Dutch and English language. I have a rare form of juvenile arthritis and I have been living with two prosthetic implants (hip joints) for more than three years. Last year I was a participant of this competition and this year I will be part of the jury. Besides all of the sad and serious stuff: I don't let my arthritis take over my life, even though it's always there. I am ambitious; I have dreams of my own, too. So this year, I want to know all about the personal goals of the contestants. I want to know where their passion comes from, what keeps them going and how health professionals can help with that. Putting this into words for the Stene Prize might be a huge step towards achieving whatever it is you want. Just remember… Arthritis might be what you have, but it can never be what you are.” Costas Ioulianos, Cyprus, President of cosmosrheuma+, representing the EULAR Health Professionals in Rheumatology “Firstly, I would like to say how proud I feel to be a member of the, Stene Prize jury panel. As a clinical physiotherapist – and due to my frequent involvement with people living with RMDs – I have come to the conclusion that there is an imperative need to involve the patient in all decisions concerning them and their life. Since we talk about multidisciplinary and patient-centered treatment, we should support this – and with our actions. The patient should be the group leader and must be actively involved in order to solve and manage their problems. We have an obligation to feel/understand everything concerning the patient. The problem is not only the disease, but all the other related problems that follow which have to do with the patient, their family, their occupation and, generally, their position in the broad community. By taking part in the judging panel I am sure that I will gain a lot from the patients themselves – a fact which is the most important element towards the success of our work.” Marios Kouloumas, Vice President, EULAR, representing PARE "It is always a pleasure to once more be involved in this fantastic competition which has become very popular among the people with RMDs across Europe. At the same time, it is a very important tool for people with RMDs to share their thoughts, concerns and hopes for a better future, and a life with improved quality and dignity. This year’s topic for the Annual Edgar Stene Prize is “Taking control of my life: working together with health professionals to achieve my personal goals”. It is very important especially for people living with a chronic disease, because a successful life is one where the person can be actively engaged with their treatment and the management of their disease – as well as having the support of the health professionals. I am looking forward to reading this year’s essays for successful stories but at the same time to see how things can be improved – and how the people with RMDs are making their own decisions and choices for their lives and health in a partnership with the treating health professionals." Diana Skingle, Chair, EULAR Standing Committee of PARE “I look forward to the Edgar Stene Prize Competition every year. I am honoured to have been invited to be an ex-officio member of the 2015 jury. The essays submitted by people with RMDs are always insightful, inspirational and enlightening. This year will be no exception. The theme gives people living with RMDs the opportunity to tell us their experiences of overcoming some of the limitations of living with these diseases and of achieving things that they had thought impossible. Everyone has hopes and dreams. Living with an RMD often presents challenges to those ambitions. However, by sharing personal aspirations with healthcare teams, and working together with them through shared decision-making, people with RMDs can set and achieve realistic milestones in order to reach particular goals. Whether those goals are to walk a longer distance each day, to be able to play with their children, or to return to work, they illustrate that people with RMDs can take control of their lives in meaningful ways that are important to each individual."
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