Family days in Grenoble – France

By Martine Gaudy.

The family days of the Rett Syndrome French Association took place in Grenoble on 17th and 18th of May 2014. Over 160 people from all the regions of France gathered in the beautiful Hotel Mercure and those two days were a very good get together of families, owing to the very good organization of Mr and Mrs Debaty, parents of Anna, who are endlessly fighting for the cause of Rett Syndrome.

The scientific conference given by Dr Thierry Bienvenu (Institut Cochin) gave the parents the latest news focused on research advancement in Rett Syndrome. Mr Thomas Bertrand made a return session on the 3rd European Conference held in Maastricht in November 2013. And Mrs Melanie Sembeni presented her research study on the consequences of living with Rett Syndrome on brothers and sisters of a family.

The main topics of these family days were focused on communication for girls with Rett syndrome and especially on AAC (alternative and augmentative communication). A presentation of ISAAC (International society for augmentative and alternative association) was given by Mrs Marie Voisin, speech and language therapist. Low tech and high tech devices were displayed. And different families explained and showed the strategies they have set up to communicate with their child. There was a special session to explain the new opportunities opened up by eye tracking devices that would allow girls to communicate by eye gazing (Tobii devices represented by Proteor from France).

These family days were special vintage ones as the elected President of the Association, Mrs Elisabeth Celestin, stood down after nearly 10 years of Presidency and having brought the Association to a high standard. And quite a few members of the Board were renewed. A new board was elected and Mrs Melanie Sembeni has taken over as President, and Sophie Bourdon as Vice President.



Family days in Grenoble – France
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