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Chairman’s Report of the 7th FEWS meeting: 20th November, 2004. Rome.
Those in attendance:
Suzy Cooper Morgan (UK) [Chair] Paul Pyck (Belgium) [Secretary] Ann Breen (Ireland) [Treasurer] Marco Moneta (Italy) Gábor Pogány (Hungary) Horst Romm (Germany) Arne Fedje (Norway) Katarina Jariabkova (Slovakia)
Those absent:
Nita Lorimer (Sweden) Jose Maria Delgado (Spain)
The 7th meeting of the European Federation for Williams Syndrome was once again held in Rome following an international conference hosted by the Italian Association [AISW]. Whilst we do try to vary the location of each meeting in order to give all our members equal opportunities regarding travel and planning, we have now held altogether three meetings in Italy. And once again, the organisation and hospitality were outstanding. Thank you to our Italian hosts, who all worked so hard for us.
As with all committee meetings, there were many administrative points on the agenda. However, there were four particular points that are worth reporting here, as they are exciting achievements, as well as being indicative of the growing strength of the FEWS.
1. Constitution:
The most important thing really, is that the FEWS now exist as an officially recognised charity, in the eyes of the EU. Our Constitution has now been accepted, and so at last, we can move forward with all our aims and objectives with the blessing of full EU backing, as well as the ability to apply to them for funding [see point 3 for more on this subject]. We have our secretary Paul to thank for this achievement, as he has – with astonishing calm and efficiency – handled all the bureaucratic minutiae. The precise and detailed requirements of the authorities regarding the organisation, and wording of the Constitution have been nightmarish to navigate. Thank you Paul.
2. Membership:
We were joined for this meeting for the first time, by a representative of Israel. Jonata Levy is a professor of psychology, is president of the Israeli Association of Rare Syndromes, Head of the Scientific Advisory Committee, Editor of the Williams Syndrome newsletter, and has also established a clinic specifically for people affected by Williams Syndrome in her home country. She vigorously joined in with our discussions, and made some valuable contributions. Jonata will now report back to the Israeli association, and they will take a decision on whether to formally join the FEWS. We certainly welcome Israel to our European Federation.
Also on the subject of membership, Cintia Torlonia has graciously volunteered to be the permanent FEWS representative for Italy. In the past we have variously enjoyed the company of Massimo Rodriguez, Marco Moneta and Jose Luis Gotor. They have all valiantly stepped in to represent their association [AISW] at different meetings, but due to their many other commitments and duties, they none of them found it possible to attend every meeting on a regular basis. Our heartfelt thanks go out to them for all the help they have given us so far, and at such a critical time in the establishment of the FEWS. Cintia is warmly welcomed on the Board, and we are all sure that her enthusiasm and commitment will have a profoundly beneficial effect on the group.
3. Marco Moneta has designed a questionnaire which has been piloted by the [AISW], and he gave a presentation on the results at the international conference. It’s purpose was to gather statistical information on sufferers of Williams Syndrome, covering such matters as medical characteristics, skills and pastimes etc. We discussed the possibility of modifying this questionnaire for the pan-European community, especially in the light of the fact that earlier (national-only) surveys do not seem to have been able to glean information from more than between 100-200 people at a time. It is a very challenging task – as I have recently witnessed from a similar project in my own country [UK]. However, once we have agreed to proceed, and then decided on the modifications [if any] to Marco’s original design, then we can apply to the EU for funding in regard to the necessary data collation, statistical analysis, translation and mailing etc.
4. Horst Romm [Germany] has designed a publicity ‘flyer’ and is also working on a ‘PowerPoint’ presentation for the FEWS, both of which will help to promote the charity as we try to reach a wider audience.
5. Finally; our first official FEWS project, now that we are an officially recognised charity! Arne Fedje [Norway] –within only weeks of joining the FEWS – has located a project that is funded by the EU, and which could benefit our Williams people enormously. ‘Youth for Europe’ is a programme designed to encourage cultural exchange and life skills, to young people with disabilities, who are between the ages of 15-25 years of age. In order to promote a ‘Europe of Knowledge’ the scheme sponsors individual organisations to set up activity camps throughout the EU. These camps are to provide opportunities for disadvantaged children to interact, to learn new initiatives and to enjoy creative occupations. The laudable objective is for these learners to acquire knowledge, experience and skills they need to live, work and participate in society. The overall budget available is between €4-5 million, and the funding for individual projects can be between 70-100%.
Arne has planned a wonderful summer camp on the island of Tromsø, within the arctic circle in Norway. Each of our member countries has been invited to send two Williams Syndrome people – girls and boys. The camp will focus on Nature and the outdoors, and the participants will have the opportunity to witness the midnight sun from a mountain-top, go fishing, have camp-fires, saunas and possibly even go on a whale safari!
Each pair of Williams Syndrome people will be accompanied by a leader from their own country, and these leaders will be attending a familiarisation and training weekend before the arrival of the young folk. Arne's presentation about the planned project can be seen here.
If you wish to see a Norwegian presentation of the site for the camp, then go to the website:
This project has cost Arne a massive amount of organisation and time, and all working to horribly tight deadlines [not for nothing is he an officer in the Norwegian Army!!]. And all his hard work has now paid off, because we have just heard that the ‘Youth for Europe’ committee has given it’s official approval, and so the project can definitely go ahead. This is a major achievement for Arne, and a major step forward for the FEWS.
We are all so excited about the camp, and I am fully confident that it is going to be the most wonderful experience for the lucky participants. An experience of a lifetime.
It would be a wonderful thing if we could all plan something similar for our members on an annual or bi-annual basis. Each country offering camps with different foci and opportunities.
6. Our meeting ended on a note of anticipation and excitement. We have yet to decide the date and location of our next meeting, but news will be posted on this site when a decision has been made.
Suzy Cooper
See the Minutes of this meeting.
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