Austrian Rett Syndrome Association (ÖRSG) Family Weekend, June 21 – 23, 2019

by Stella Peckary

In Hipping, close to the lake Attersee, 22 Rett families with their girls/boys and siblings met on a sunny weekend in June. The Board of ÖRSG met on Friday afternoon for planning the organisation of upcoming events 2019/2020 and welcomed a new Board member – Elisabeth Nimmerrichter, who will also take over the editing of the yearly ÖRSG-newsletter.

by Stella Peckary

Friday evening, Stella Peckary (RSE Board member) and her husband Gerhard (both act as foreign delegate) talked about Rett activities around the world. In the presentation she explained the importance of the RSE Rett Resource project, which has been translated into various languages up to now. Stella and Elisabeth had already done the proof read of 4 articles into German language to present them to the family members. The positive feedback was remarkable and motivational. Showing a picture presentation of the visit in a special school for handicapped children (Kirkebaekskolen) during the RSE General Assembly in Copenhagen 10/2018, the family members were impressed with the incredible number of carers, therapists and devices of the school. Another part of the presentation was dedicated to the combined strength of donations of Rett-Syndrome foundations. The differences and commonalities of RSRT, Reverse Rett and Rett Syndrom Verein für Forschungsförderung e.V. (Germany).

Saturday started with the official welcome and introduction of the programme through our president Günther Painsi. Meanwhile our Rett-girls/boys/siblings were lovingly entertained and well looked after by a reliable team of carers. Dr med. Egmar Herth presented the Schumann 3-D System, a plate, which is a comprehensive concept for skeleton, muscles and the fascial tissue. The vibration system of the plate is also usable for Rett patients, and it is sometimes able to settle down the stereotypies. Rett’s, siblings and parents were allowed to test the 3-D Platte, which is privately owned by Rett-mom Birgit Berger.

After a break some families showed picture presentations of travelling with a Rett-Child/Lady. We all were impressed about the unbelievable travel-possibilities with our kids. Rett-Boy Lukas attended a sports week of handicapped children; Heike climbed up volcanoes in Iceland with the help of her brothers; Mareike was camping with her family in Croatia; Vanessa just loved motorboating and swimming between the small islands in the Croatian Sea with her parents. Andreas took his Daniela for a 3-week camping tour from Austria – Italy – Sicilian – Corsica – France and Swiss.  

An interesting and informative walk through “Das gläserne Tal” (the habitat of glass blowers in the last century) for the parents was certainly a perfect and nice way for personal conversations too.

After the Ordinary General Assembly on Sunday morning all voiced a positive opinion in a final feedback session. With a preview to the next meeting in October 2019, emotional Goodbyes showed the success and importance of such a Family Weekend.


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