On the weekend from June 22nd to 24th 2018 the yearly family weekend took place in the wonderful surroundings of Attersee-Lake and the pre-alpine landscape. Nearly 100 attendants – parents, Rett-girls, Rett-boy, siblings, carers and speakers were very pleased and appreciated the “come together” of the Rett-families.
During the Board meeting on Friday afternoon, the Board members were informed about the new data protection regulations by a legal expert. This was very interesting, as many rules were not new, but haven’t received consideration yet. The main focuses were on homepage, Facebook and newsletter.
After an abundant common dinner for the families, Stella Peckary, who is the abroad representative of the ÖRSG, and RSE Board member, informed the families about the 5th European Rett Syndrome Congress in Berlin (November 2017), about the European Rare Disease Conference in Vienna (May 2018) and the tasks and aims of Rett Syndrome Europe, with emphasis on the new launched project “Rett Resource”.
Dr. Michael Freilinger, Med. University Vienna, gave an overview of the last year’s trials, and explained why it is such an incredible long way to find decent, acceptable solutions for our girls. The main and real experts were still the Rett-parents, in close cooperation with the doctors. With pleasure he answered questions concerning medication and therapies. Another presentation, by Mag. Atzmueller-Gaugg, pointed the focus on siblings’ behaviour and the resulting challenge for families with a handicapped child. This was followed by an intense discussion.
While our Rett-Children and their siblings were in thoughtful care of counsellors, a tourist guide in traditional Celtic costume leaded our group of parents, on the pathway of the Celts who had settled in these rural areas during the Middle Ages. While hiking, we moved together closer with talks and lively exchange of experiences with our Rett’s.
For a convivial, relieving evening, “Duo Zeitlos” pleased the families with a guitar concert on Saturday evening.
@ Stella Peckary
Austrian Rett-Syndrome Association