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Chairman’s Report of the 8th FEWS meeting: 15th October, 2005. Dublin.
The FEWS had their annual meeting in Dublin last October, as guests of the Irish Association. Ann Breen their Chairman had organised our accommodation in a lovely hotel set in the country just outside of the city, and the hospitality both from our hosts and from the hotel staff, was wonderful. There were many members if the Irish Association there at the same time, and the atmosphere was positively buzzing. Smiling faces everywhere. Everyone was in a party mood. Our committee meeting was held on Saturday, and then in the evening Ann had organised a gala dinner in the hotel restaurant, after which we were all treated to an amazing concert by some of the Williams people who had attended the Irish Music Camp that summer. The standard of music and entertainment was astonishing, and it was especially moving because we were all able to witness just how much musical and theatrical talent Williams people have. It was a truly joyful, magical evening. The Irish Music Camps (organised by Ann Breen herself) have certainly achieved an extraordinary standard of quality and enjoyment. Most people who attend once, have such a good time that they become annual visitors. These camps are open to anyone in the Williams community, so if anyone reading this would like to join, then please contact Ann, whose address is on this website.
The Committee Meeting those present were;
Ireland Belgium Germany [Bavaria] Norway Spain Sweden Italy Hungary UK
Membership We now have the membership of 10 European countries, and I am thrilled to report that Slovakia, Switzerland and 2 Independent French associations have all voted to join the FEWS in 2006. Finland has also expressed interest in joining us, although as they are not members of the EEC, and the rules of membership are quite strict, we must look for a way of making them ‘affiliates’ in some way. But the great news is that the FEWS are growing.
Research The Italian association has designed a very comprehensive questionnaire for researching the WS community, which investigates all aspects of their lives, as well as the effects on the lives of their families. The Italians have already had much success with their national members’ feedback, and at our Dublin committee meeting the FEWS voted to send it out to as many Williams people as we can throughout the whole of Europe. We aim to make it an international research project. This questionnaire covers many important aspects such as; health care, education, employment, social care and government funding, as well as personal relationships. If we all receive a good response from each of our country’s membership, then it will be one of the most important pieces of research ever carried out on WS, and on such a large scale. It could provide vital information on the Syndrome – for all sorts of future research and practical guidance.
Also on a similar theme, we have now joined the internationally renowned charity EURORDIS (European Organisation for Rare Disorders), and so will be able to take full advantage of their access to the latest scientific research and networking power.
Summer Camp in Norway Another huge achievement this year was the summer camp entitled ‘Conquer Nature under the Midnight Sun’ which was held in Tromsø, and was organized by Arne Fedje – our Norwegian representative. This was a pilot-study, and so Arne had no past experience to work from. He had the enormous task of investigating the EU funds available, sourcing them according to their hugely complicated rules and restrictions, and then organising the event itself. It was an enormous undertaking, but Arne has exceptional organisational skills, and a wonderful personality to match, and so the camp was an absolute triumph! 2 Williams people from each country were invited to attend with one helper. At the committee meeting Arne showed us all a DVD made by a professional camera crew who followed the campers around during the week, and caught the enthusiasm and fun on film. It is a very positive and moving film, and in a similar way to the Irish Summer Camp, it is thrilling to witness exactly how much Williams people are capable of achieving. And also how their wonderful sunny personalities shine through every thing they do.
This wonderful film was made by ‘Sister and Brother’about the camp - just the right length and just the right content - and I think it deserves a lot of media exposure [not only for WS families]. You can see the streamline version of the film here.(16.09 min, optimised for DSL)
The next summer camp will be in Hungary this July, and there is another one planned for Sweden in 2007.
The Hungarian camp will be again another step of growth, funded by the EU "Youth for Europe" grant which was successfully applied by Gabor and the people of HWSA. This time three (or four) Williams Syndrome people will be accompanied by a leader from their own 10-12 countries, and these leaders will be once again, attending a familiarisation and training weekend before the arrival of the young folk. The international camp will be organized in parallel with the "usual" Hungarian camp utilizing all the tools and experiences of it. Around 180 people will take over a whole hotel. The camp will focus on "Actions for Equal Opportunities – as an International Development Adventure Camp for Youth with Williams Syndrome". The goals of this international camp are:
Furthermore, the participants will have the opportunity to visit a famouos 950 year-old Benedictine Abbey and the City of Hungarian Queens which is full of cultural treasures. They will have camp-fire, saunas and go to the beach of lake Balaton! The detailed preliminary program can be seen here.
The camps are open to anyone within the European community, so if you are interested to know more then please contact your national association. There will be more information posted on this website as the planning develops, but now is the time to start booking for Sweden!
Our next meeting will be in October 2006, hosted by the Spanish Association, in Madrid. I can’t wait!
Suzy Cooper
See the Minutes of this meeting.
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