1st European Tay-Sachs and Sandhoff Family Conference 2013
On the 28th September the very first European Tay-Sachs Family conference was held in Mondsee, Austria. The event was arranged by Eva Irran from the Hand in Hand Against Tay-Sachs charity which is based in Austria.
On the first day of the conference the families who were attending arrived during the afternoon. Eva and Zivan along with their daughter Haylie who suffers from Tay-Sachs were the first at the hotel along with Gregor, Petra and their son Matija who suffers from Sandhoff disease who had driven from Slovenia. Later in the day I arrived with my youngest daughter Grace as Amelie, who has Tay-Sachs was unable to travel on planes. Later in the evening we were joined by Beatriz, her husband and Isabel who arrived from Spain. In total there were four families and it made for a very intimate event where everyone was able to talk freely.
The evening of the first day was spent catching up and then having dinner at the amazing Country Hotel. Joining us were Professor Cox who had joined us for the weekend to give an update on his work.
On the 29th September we had then first day of presentations which started after a leisurely breakfast and joining us were Dr Lagler who is a paediatrician in Austria. I gave an introduction to The CATS Foundation along with a update on our work. I then had a question and answer buy nexium online session which ranged from people asking what our future plans are and what we can offer. I then provided an update on the European Tay-Sachs Charity Consortium (ETSCC) and what Eva and I hoped to achieved with it.
After a short coffee break Professor Cox gave an introduction to his work and this was then followed by talks by Dr Lagler, Professor Spona and Mr Leurger. The topics covered ranged from the planned clinical trial in Europe, to alternative medicines to manage the many symptoms of the disease. The day was then finished by Eva Irran giving an overview of her charity Hand in Hand Against Tay-Sachs.
In the evening all the families met to have dinner and the next day there was a creative day with the children. Full highlights and photos of the conference can be found below, along with a short trailer in English, German, French, Spanish and Portuguese.