Scientific Advisory Council
and
Federation Council Meetings
by Peter Crawford, President, CdLSA

At Grosseto, the International Scientific Advisory Council met, as did the Council of the Federation of National CdLS Support Groups.

Dr Levin, Chair of the SAC, reported that he had nearly filled all the positions on the SAC. The idea is that the SAC have as members at least two international experts in about 18 areas of expertise relevant to CdLS. For example, not only geneticists and reflux experts, but also educationists and behavioural experts – as well, the professional director of each national body is a member of the SAC.

He also reported that all the members were now linked electronically so that each can communicate with all the others.

The SAC is constantly faced with the problem of bringing individual families into contact with appropriate experts in their own countries. This is even harder when the family lives in a country that does not have a national organisation. He urged those of us who have national organisations to establish our own panel of experts so that they could be at least an initial contact point for the SAC.

Dr Levin reiterated the willingness of SAC members to carry out what they see as their basic purpose: to be of use to all families with a CdLS member.


The Federation Council, in its discussions, identified two major issues – language and the database of answers to ask the doctor.

* Although the database of answers has been set up on the CdLSWORLD website, making it available in languages other than English is of high priority. Further, the Council became aware that the databases of answers maintained separately by the US Foundation and the CdLS world website were diverging. Ways and means to prevent this need to be found.

* Dr Levin assured Australia (on behalf of The Philippines) and Portugal (on behalf of Brazil), that he would identify doctors who would be willing and able to support local families in those countries. Increasing numbers of families seeking support from established groups due to geographical location (the Philippines) and language (Brazil) necessitate increasing knowledge of local services. This in turn will help establish local CdLS chapters in the future.

* On matters financial, the Council accepted the financial statements, adopted a working budget for the next two years and detemined the amount of the Federation’s contribution to the Italian Association towards the costs of the Grosseto conference.

* The Council received a draft constitution/by-laws for the Federation that had been prepared by Sara Pinto and passed it to the executive to progress.

* Canada announced that the themes of the 2007 International conference in Niagara Falls would centre around behavioural issues and siblings.

* The Council unanimously welcomed the proposal that the 2009 conference be held in the UK.

* Ulla Mugler was elected as the new Chair. Alan Peaford stays on the executive as the immediate past Chair. Bernadette Dallingwater was nominated by Canada to the position on the executive reserved for the next host country. The Council decided to create a further executive position of Treasurer and elected Peter Crawford as Teasurer.


Viva Italia!
Many thanks to Ulla Mugler, Dr Angelo Selicorni, and the Italian committee, for organising such a spectacular conference. International CdLS conferences have been brought to a new level of excellence with the addition of simultaneous translation in three languages – a ‘must’ for Europe.

The two-day professionals’ conference was extremely well attended. The meeting room was packed with doctors, therapists, carers, and other related professionals – speaking a variety of languages, and all learning more about CdLS. There was an emphasis on the genetic research, as well as speakers covering the whole range of medical problems people with CdLS face. This can only lead to better informed treatments for our children.

Thank you, Italy, for making us so welcome.