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Minutes of the FEWS meeting of 21 October 2006Venue: Spanish WS association ASWE, Madrid The Meeting was opened at 15h10. 1. Presence in attendanceThe following associations were represented at the meeting:
· Williams Beuren Syndroom vzw (Belgium), represented by Paul Pyck · Association de Syndrome de Williams de France, representated by Christian Castillon · Bundesverband William-Beuren Syndrom (Germany), represented by Horst Romm · Magyar Williams Szindróma Társaság (Hungary), represented by Gábor Pogány · Associazione Italiana Sindromo di Williams (Italy), represented by Cintia Campello-Torlonia · Norsk Forening for Williams' Syndrom (Norway), represented by Arne Fedje · Asociatia williams syndrome (Romania), represented by Camelia Lazar-Livieratou · 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:
· Autour de Williams (France), delegate Jean-Paul Louis · Williams Syndrome Association of Ireland, delegate Ann Breen, · Spoločnosti Williamsovho syndrómu (Slovakia), delegate Katarína Jariabková
The new associations were shortly presented:
• Camelia Lazar introduced the Romanian association. As a mother of a 2 year old WS daughter, she founded this association earlier this year in order to increase the WS awareness and find other parents. After some months she has a few parent contacts already.
• Christian Castillon introduced the Association de Syndrome de Williams de France (ASWF). This association has 10 regional groups all over France. Unlike former presidents, the new president of this association believes in the benefits of a European cooperation between associations, hence the recent adherence to FEWS.
• In the absence of François de Oliveira (President), Paul read his message sent the day before and Christian explained also the background for two different associations in France. Autour de Williams (AdW) is a young French WS association, which is more centrally lead (no regional groups) than ASWF. In some years AdW has had different actions to raise awareness of WS in France. The message includes also 2 topics that were discussed in the meeting (see further). The delegate for this association becomes Jean-Paul Louis. 2. Approval of the minutes of last meetingThe minutes of the last meeting were approved without comments. 3. Research and scientific coordinationIAutour de Williams has 28515 Euros available for funding research programs about WS. This information should be forwarded to specialists in the different European countries. AdW is launching a call for letters of intent, to be sent before the end of this year to our email or address: autourdewilliams@yahoo.fr or Autour de Williams, 78 Rue de Legendre, 75017 Paris. The letter of intent should include a clear proposal, objectives or expected benefits and a detailed financial demand. The letter of intent will be evaluated by AdW’s scientific and medical committee. See http://www.autourdewilliams.org/webFR/index.htm. In last year’s meeting, it was decided to translate the Italian WS questionnaire first into English and then into the different other languages and do the survey in more countries. The goal of this survey is to obtain relevant statistical information on people with Williams Syndrome. Further analysis might also possibly indicate differences between countries. The actual status of this project was discussed: • The questionnaire was translated into English by the end of 2005. • No funding was found for the translation into different languages. • Some countries translated already themselves, distributed the survey and collected the results (no consolidation of results yet). Figures between brackets are the number of responses: Italy (original survey in 2004: > 100), Spain (16), Hungary (31) and Belgium Flemish speaking + part of the Netherlands (> 30). • Others countries intend to do the translation and the survey: UK, Sweden (depending on Eurordis survey proposal), Germany (after a translator has been found), France (after translation). • Norway did not get the approval from the board as they are not convinced about the practical use of the results. • Cintia will send us information about how the collation of data has been done in Italy as well as the purpose and the kind of analysis that is being done on the Italian results. Horst reported on the Eurordis activities: • Eurordis prepares a Care survey (EurordisCare3) for 13 rare disorders on European level. Horst answered some preliminary questions some months ago for adapting the survey specifically for WS. It was decided that each WS association is free to participate or not into this survey. Paul will send the WS associations coordinates to Eurordis in order that Eurordis can send the invitation for participation for the survey to each of them. The timing schedule for this survey is:
• Horst participated in the joint ACHSE - Eurordis meeting in Berlin. ACHSE is the German rare diseases organisation. The topic of this meeting was referral centres, i.e. getting an overview of which care centres per country are specialised per rare disease. • The Eurordis meetings in 2007 take place in Lisbon and Praha. One of the topics will be summer camps (this project is called RHAPSODY). • Horst informed that Eurordis itself cannot offer funding for FEWS. Autour de Williams participates in a contest. If they win the contest, they may get a prize of over 10.000 Euro. AdW would like to fund an international meeting in Paris with this money and asks the FEWS’ opinion and help. All members agreed it is a great idea and voted our support. It was decided that Paul asks more details about the goals of the conference and kind of support FEWS can offer. Camelia proposed the development of a project for information transferral by sending professionals to WS referral centres in Europe. Actions: • All to forward the message on Autour de Williams’ research program funding to the specialists in their country. • Countries that committed for the WS survey to proceed with the translation, send survey and collate the results. Cintia to inform us about collation and analysis of the survey. • Paul to send the coordinates of all WS associations to Eurordis in order to send an invitation for participation to the EurordisCare3 survey. • Paul to ask more details about the possible Autour de Williams’ International Conference. 4. Fund-raisingArne looked for funding for the FEWS meetings. No EU or other official programs exist to fund the FEWS meetings. Horst told Eurordis recommends finding a commercial company to sponsor the FEWS meetings. Possible examples are Pfizer and Roche. Roche targets genetic therapies. Every one looks for possible contacts. Camelia proposed to look for sponsorship on European level with consumer goods companies. This is good for their image, for the FEWS account and to increase the awareness of WS.
Actions: All to look for possible sponsorship contacts.
5. Publicity and awarenessHorst will adapt the FEWS flyer with the new members. The incidence value will be changed to 10000 – 20000. Paul will provide him the exact names of the new FEWS members. Gabor will publish the flyer on the FEWS website. Last year 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. Horst agreed already with Cintia that the German association will pay for the German translation and take 1000 CDROMs. It was agreed that other countries wishing to have the CDROM in their language should contact Cintia directly to negotiate the financial conditions for such translation. The negotiations should be finished by end of November 2006 in order to proceed then with the new CDROM version.
Actions: Horst will adapt the FEWS flyer, Paul to provide the exact names of the new FEWS members, Gabor to publish the flyer on the FEWS website. All those who want to have Italian CDROM in their language to contact Cintia for financial conditions. 6. Communications / websiteHorst attended part of the WSA convention in Richmond (USA) this summer and reported on the event using pictures taken during the convention. There is a new book for professionals announced about the Williams Syndrome. The spoken text of all presentations of the convention has been put as MP3 files on 2 CDROMs. They are available from the WSA.
The use of the e-mail group fews@yahoogroups.com was discussed. Some delegates don’t receive part of the e-mails. The probable reason for this are spam filters installed by their Service Providers. Therefore from now on everyone should avoid the use of this e-mail list and use instead an individual e-mail list. Depending on the e-mail application used, it may be possible to define an e-mail distribution list, which simplifies the use. Additionally it was asked to send e-mails only to all delegates if it is relevant for all. Otherwise the specific persons should be selected for sending the message to. This avoids large quantities of irrelevant messages.
Actions: Susie to send UK report on the summer camp to Gabor for publishing. Paul to send e-mail list to everyone. All to use individual e-mail list instead of yahoogroups mailing list 7. Camps and holidaysGabor gave feedback on the Hungarian summer camp 2006: see the presentation here
• It is better if the preparation meeting occurs earlier, but this is difficult as it can only be planned after the proposal has been accepted. • There was a kind of conflict of expectations between persons with continuous access to therapies and those with only access to therapies during such camp. • Approximately 200 persons attended the camp. Attendees were divided into 3 groups: 2 Hungarian groups and 1 International group. • There were daily evening meetings with the leaders for feedback and possible changes for the next days. • There is a need for a more fluent information flow between the leaders of the organisations and the participants. • We should try to involve more the participants into the planning of the program during the grant-writing process. • 60% of the funding were EU grants, of which the majority were travel costs. Excluding those travel costs, 1/3 were EU grants and 2/3 were other grants. • While the large number of participants was an advantage for some activities (e.g. farewell party), it became more problematical for other activities such as organised visits.
Arne mentioned that there is another way to do apply for EU funding. Instead of centralising all applications through the organising association, it is also possible to apply separately per country to the local Youth Agency.
Stefan gave details about the Swedish “Sound and Action FEWS camp” in 2007. He started with a short presentation of the proposal. He has emailed previously everyone with details.
• The camp is for a maximum of 12 participating countries. Per country 4 WS youngsters and 2 leaders can participate. • Participants commitments were checked: Sweden, Hungary, UK, Germany, Finland, Slovakia, Ireland, Spain, Belgium, Norway, France and Italy all plan to apply. As Romania will probably not have candidates, Camelia will possibly come on her own cost. • The application deadline is 15 December 2006. Shortly application forms will be sent to associations. • There will become a FAQ section on the camp available on the Swedish website http://www.williams-syndrom.se.
Horst gave preliminary information about the summer camp in Germany for 2008. The camp is planned from Monday June 30th to Wednesday July 9th 2008. The preparation meeting will be on 16-18 or 23-25 May 2008. The camp location is Die Langau in Steingaden (Bavaria). The theme is still to be defined.
Actions: All to apply for the Swedish summer camp before 15 December 2006. 8. Membership and financial statusAnn was not able to attend the meeting for personal reasons. She sent a financial report since last year’s meeting as shown below.
Belgium, AdW France, Germany, Ireland, Slovakia, Sweden and UK paid their 2006 fee. One additional fee was not identified by Ann: this fee comes from ASWF France. Before the meeting no 2006 fee was received from Hungary, Italy, Norway and Spain. Hungary paid cash to Paul. The others will transfer the money. Hungary asks an invoice for the payment. Slovakia paid already the 2007 fee cash to Paul. It was decided that Ann sends an invoice (by e-mail) to all member associations by December 1st for the fees for the next year with a payment deadline of 1st of February of the next year. When the deadline is over, a reminder must be sent. In this way fee payment happens in time. The invoice for next year’s fee should be sent to all the actual members as well as to Romania. The idea was raised for using money on the bank account for funding delegates that otherwise cannot attend the FEWS meetings for financial reasons. It was decided that the board will decide on such requests based on objective rules including a maximum percentage that can be refunded and possibly an absolute maximum refund value. The rules are to be decided.
Actions: Italy, Norway and Spain to pay their 2006 fee. Paul to transfer the Hungary 2006 and Slovakia 2007 fee to the FEWS bank account. Ann to send an invoice to Gabor for the 2006 fee. Ann to send an invoice to all for the 2007 fee by December 1st. 9. Any other businessHorst and Gabor asked everyone to send articles of the local activities to all for publishing them in national newsletters and on the FEWS website.
Camelia asked for a chat room / discussion forum on the FEWS website for all European parents in the English language. No resolution passed.
Paul asked 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).
Actions: All to send articles of local activities to all for publishing. All (when applicable) to send changes in the member association to Paul. 10. Date and location of the next meetingThere are 2 proposals for a date and location of the next meeting: · In Slovakia in October (exact date and place to be defined). · In Paris, linked to the International Conference organised by Autour de Williams if they get the prize.
The Meeting was closed at 20h15. Paul Pyck
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