Minutes of the FEWS meeting of 11 October 2008

Venue: 25 Rue Lantiez, 75017 Paris

The Meeting was opened at 14h15.

1.           Those Present

The following associations were represented at the meeting:

 

         Williams Beuren Syndroom vzw (Belgium), represented by Paul Pyck

         Fdration Franaise du Syndrome de Williams et Beuren (FFSWB - France), represented by Christian Castillon and Pauline Berthillot

         Autour de Williams (AdW - France), represented by Franois de Oliveira and Pauline Delpierre

         Bundesverband William-Beuren Syndrom (Germany), represented by Horst Romm

         Magyar Williams Szindrma Trsasg (Hungary), represented by Gbor Pogny

         Williams Syndrome Association of Ireland, represented by Ann Breen

         Associazione Italiana Sindromo di Williams (Italy), represented by Cintia Campello-Torlonia

         Norsk Forening for Williams' Syndrom (Norway), represented by Arne Fedje

         Spoločnosti Williamsovho syndrmu (Slovakia), represented by Vladimir Bzdch

         Asociacion Sindrome Williams (Spain), represented by Jose M. Delgado

         Williams SyndromForeningen I Sverige (Sweden), represented by Stefan Blomberg

         The Williams Syndrom Foundation (UK), represented by Susie Cooper

 

There were apologies for absence of:

         Asociatia williams syndrome (Romania), delegate Camelia Lazar-Livieratou

2.           Approval of the minutes of last meeting

The minutes of the last meeting were approved without comments.

3.           Research and scientific coordination

AArne mentioned his good experience with hormone treatment of his daughter to delay her puberty. The main reasons to do so are that the child is not mentally ready and the possibility to grow more (difference up to 10cm). Using hormone treatment for WS daughters is a discussion going on in the Norway association.

Vladimir mentioned his experiences in cardiology: the aortic stenosis typically worsens with the age, while the pulmonary stenosis improves with age. The arterial sclerosis degenerates more rapidly than normal. One must take precautions against the possibility of a sudden death after a medical procedure (coronary spasm) -> there should always be a resuscitation team on hand during surgery.

Franois de Oliveira presented the scientific activities of AdW during the last years. The funding includes own actions and co-financing with other organisations. AdW wants to spread the projects and collaboration internationally in order to finance the best projects. He raised two questions towards FEWS:

1) Can FEWS help in a joint evaluation of the projects?

2) Can FEWS cooperate on the call for projects?

Franois reported also on the 3 days International Conference in Paris in April 2008. There were 450 participants. Day 1 was an International conference. Day 2 was focussing on discussion in small groups and seminars. Day 3 was a happy end with the families at Disney Paris. The abstracts of the conference will be printed by end of October 2008 and put available on the website.

Orphanet (www.orphanet.org) is a network of scientists on rare diseases. Many French projects are in this list. Projects of other countries are less present. Everyone to encourage his/her scientific board or contacts to add their WS related projects on this website.

No activitities have taken place last year regarding the questionnaire to WS families based on the original Italian survey. The meeting agreed that this survey only makes sense as part of a project with scientific support. The questionnaire is put on hold.

Prevalence of WS on the Orphanet site is 1/7500. This is based on a Norwegian publication. There are doubts on this figure. Values of a study in Flanders give 1/33000 and in Sweden 1/20000. Gabor to collect info from all countries (as far as they exist) and make a new proposal to change the figure on the Orphanet website.

4.           Fund-raising

As decided last year the rule on sponsoring of delegates attending European conferences on rare diseases remains applicable.

Everyone to think how to raise funds as spare funds for summer camps in case the organiser doesnt find enough money outside the EU grants.

Arne suggested that at the next meeting a Eurordis Fund Raising specialist be invited to give us a presentation (action Susie).

5.           Publicity and awareness

Pauline Delpierre gave a presentation on the awareness actions of AdW: mime action in Gare de Lyon, video clip, red nose day, bike race in Dijon, awareness advertising in the subway, interviews on web, radio and magazines, running race in Paris

Three years ago the plan was launched to update a CDROM, created by the Italian association, with other languages and some information on FEWS. The original CDROM is already in 3 languages: Italian, English and Spanish. This CDROM is a nice tool to promote awareness of the syndrome. It was decided to proceed now with a clear timeline as follows:

1) By end of October 2008 Cintia sends the texts of the CDROM to everyone in English.

2) All those interested in the CDROM translate the texts in their own language (if not already existing) and send it back to Cintia by the end of January 2009. One exception: the German translation will be done in Italy. In addition everyone lets Cintia know by the end of January 2009 how many CDROMs his/her association intends to order (one time order). Assume a cost of 0,5 - 1 / CDROM.

3) In the mean time Cintia will use the existing FEWS presentation to add some information on FEWS on the CDROM.

4) Cintia finishes then the CDROM and sends a quote of the costs to all associations by end of March 2009. It was decided that FEWS may pay the start-up costs for the CDROMs.

5) After confirmation of all on the ordered quantities, the CDROMs are produced and distributed to all participating associations (Cintia). Target date May 2009.

6.           Communications / website

Due to problems with the Hungarian ISP, the FEWS website again has changed its URL into www.eurowilliams.org.

Gabor was asked to put links on the website to 3 different forums: one in English (US), one in German (Germany) and one In French (France).

Everyone is asked to monitor the FEWS website and make suggestions to Gabor to add content or other improvements.

Gabor and Paul will liaise to build a Drupal website. Such site offers interactive possibilities. Gabor will ask his ISP for a test site with Drupal. Paul and Gabor will jointly take responsibility to work it out.

7.           Camps and holidays

Stefan gave the video DVD & photo CD of the Swedish summer camp to the countries that participated. His conclusions about this camp: it was a huge project, involving 1000 hours spent on project, but still a fantastic experience for everyone. He advised that to run such a large camp, you need a staff of 5 or more.

Horst spoke about the camp experience in Germany with a presentation. His conclusions about the camp:

Tremendous work; it was a success thanks to the help of very engaged leaders; an advance planning meeting is very important to organise activities; the organising association needs to have money in reserve, in order to cover costs before these are being paid back by the EU or others (typ. Half a year later).

Horst, Stefan, Gabor and Arne, who have all organised previous camp s, are asked to write Guidelines for any organisers of future camps.

Christian presented the 5th FEWS summer camp 2009 Action in Provence in Valbonne France. For the participating countries the application deadline towards Christian was said to be end of October. During the meeting this was postponed to end of November. After the meeting it was changed to mid of November (15 November 2008). It was noted that the application can be sent even if the final choice of participants isnt made yet. The rule of 4 participants + 2 leaders however is very strict.

Cintia announced the Italian association plans to organise the camp in 2010.

8.           Membership and financial status

AAnn sent the financial report for the period since last meeting (13/10/2007) until this meeting (11/10/2008) as shown below.

 

Note: 2008 membership fee from UK to be paid at the meeting.

 

Belgium, Fdration franaise du syndrome de Williams et Beuren (FFSWB), Autour de Wiliams (France), Germany, Hungary, Ireland, Italy, Norway, Romania, Slovakia, Spain, Sweden and UK all paid their 2008 fee. Norway still has to pay their 2006 & 2007 fees.

Ann will send an invoice to all for the 2009 fee by December 1st.

9.      Election of officers

The candidates for election were:

Chairman: Susie Cooper

Secretary: Paul Pyck

Treasurer: Ann Breen

All have been re-elected for a 4 year period.

10. Any other business

Stefan is in contact with an Austrian family who intends to start an Austrian association.

Stefan steps down as Swedish president, so .this was his last meeting, His resignation was acknowledged, and he was wholeheartedly thanked by the Committee for his wonderful contribution to the FEWS.

Vladimir reports that 11 Czech families participated in activities of the Slovak association. He will send contact details of the Czech association to Paul.

Gabor suggested to camp organisers to apply also the EU proposal in a slightly different way, in order to access different avenues of funding .

Horst repeated his earlier request that everyone to send articles of the local activities to him for publishing in his national newsletter.

Horst also reported that he has some info on persons found with a double chromosome 7 region instead of a deletion of the same zone in WS. He will send this information to all.

Ann presented a book she compiled. It is called Angels at our Table: Williams Syndrome Stories. Anyone who is interested can contact her for copies.

Paul asked all to send all changes of member associations to him. This includes changes in the constitution (send text changes and publishing), changes in the board (send all coordinates of the new board members including, name, address, identity card nr, birth day and place) and changes in the FEWS delegate (send a document where the legally responsible(s) give full power to the new delegate within FEWS).

10.      Date and location of the next meeting

Paul proposed to organise the next meeting in Leuven Belgium. Everyone agreed on this proposal. The meeting date will be Saturday 10 October 2009

 

The Meeting was closed at 18h00.

 

Paul Pyck