4th meeting – Turin, 16/17th November, 2001

Suzy Morgan: Chairman

The 4th meeting of the European Federation for Williams Syndrome was held in Turin last November, and was the most successful yet. We were in Turin at the invitation of the Italian Association, who are among the founder members of the FEWS. They were hosting their own convention at the same time, in the fabulously impressive Lingotto Conference Centre, which was the original Fiat Factory.

The hospitality and organisation were awe-inspiring, and I’m certain that the warm and friendly efficiency of our Italian hosts helped a great deal in making this such a fruitful meeting.

In terms of achievement, we have now accomplished the unanimous agreement on the Constitution of the FEWS, and we now have a practical working document which has been signed by all the member countries. This has not been an easy task, because as membership has grown with each meeting, and each country tends to bring a slightly a different agenda to the table, there has been a fair amount of debate about the proposed priorities of the federation, and the wording of the document etc. But given these factors, I think we all feel proud that we have achieved so much within such a short space of time. (See the minutes of the meeting here.)

The final legal registration of the Constitution will not be completed for a while yet, as we need to make it acceptable to the EU system. Our secretary Paul Pyck from Belgium is doing an absolutely amazing job organising this for us. Not only is he dedicated, but he is extremely
efficient, and a delight to work with.

In the meantime though, all the FEWS members can move forward and begin to strive towards our common objectives. We have formed sub-committees, each with our own responsibilities, and we are all ‘beavering’ away in order to reach our goals. My own responsibility is to design and organise our official publicity. A huge task, but crucial, because without it we cannot raise awareness or apply for funds.

Membership has now risen from 4 countries in 1999 – to 8 registered members at the last meeting, with more countries now showing an interest. Those registered are:

Belgium 
Ireland
Hungary
Italy
Norway
Spain
Sweden
UK

Switzerland has just announced this week, that they too wish to join, and those expressing a committed interest or already intending to join are:

France
Switzerland
Slovakia
 

The Williams Syndrome Convention of 2001, convened by the AISW [Italian Association] held in the Lingotto Centre in Turin, 16/17 November, 2001
 

I’ve already touched on the wonderful reception that we received from the Italians, but it is also worthwhile giving a fuller report of the entire weekend, as there are so many ways in which we all benefit as a global community from such events. We all know that Williams people are very
special, but it’s at events like this that the message is reinforced. 

The majority of us arrived on the Thursday evening – straight from work, and went straight to our various hotels which had been pre-booked by our Italian hosts.

On Friday morning we were all met by charming young uniformed people who regularly give up their free time in order to perform acts of charity. They acted as our chauffeurs for the entire weekend, and on one occasion even gave some of us an impromptu guided tour of the city!

Friday morning was spent conducting the Opening Ceremony, and each representative of the FEWS gave a short presentation about their own national organisations.

The afternoon was dedicated to scientific presentations, amongst which were two by our own Kay Metcalfe [Typical and atypical Williams Syndrome] and Sarah Patterson [Atypical development trajectories in language and number].

There were simultaneous translations occurring throughout the conference, which ensured that everyone was able to engage with all aspects of information.

The conference room was so full that some of those present were standing outside watching events on TV monitors! Attendance was beyond even the Italian expectations, and Leopoldo and Cintia Torlonia, who were largely responsible for the organisation, had also ensured national television and newspaper coverage. The main advantage of which is that public awareness
will have been raised still further. 

On the Friday evening our hosts organised a magnificent dinner at a restaurant specialising in local food, for all the FEWS delegates plus the scientists who had made academic presentations. A truly memorable evening. 

Saturday was the big day for the FEWS though, as our meeting was arranged ‘elsewhere’ while the conference continued. This ‘elsewhere’ turned out to be a glass pod suspended over the top of the old Fiat factory, offering 360` views of the old rooftop racetrack, and the city of Turin itself [photos attached]. No wonder we achieved the best meeting so far! 

Thanks to the efforts of the Hungarian membership, the FEWS organisation now has an official web-site, and the Constitution etc is posted there. In the meantime, we all have our individual responsibilities to perform, which will enable the speedy and efficient functioning of our noble body.

We all came away enthused and motivated. And this was due in no small part to the magnificent [in the truly global, renaissance sense of the word] hospitality from our hosts, - especially Leopoldo and Cintia Torlonia.

Now we can move forward.