Family reunion/conference at the Zittau/Görlitz University of Applied Sciences

From April 20 to 22, 2018, the HSZG invited 28 families to a special meeting on the campus in Görlitz. They are all united by the fact that there is a member of their family with Williams-Beuren syndrome (WBS). WBS is a rare, genetic developmental impairment that is usually accompanied by a mental disability and leads to a lifelong need for care. Those affected and their families need a strong network to cope with the daily challenges. Prof. Dr. Ingolf Prosetzky, Professor at the Faculty of Social Sciences in the Department of Curative Education/Inclusion Studies, is a specialist in the syndrome.

Together with Dipl. Psych. Vera Danielsmeier (research assistant and doctoral candidate at the TRAWOS Institute) and eight curative education students, they have been researching everyday educational issues in the "WBS in Resonanz" group since October 2016. With this family meeting, the group is committed to building a strong network between families, professionals and researchers in the region.

People affected by this rare disease are also considered "orphans of medicine". Doctors, educators and therapists are generally unaware of WBS, making it difficult for affected families to get the help they need for their particular situation. The specific profile of medical problems (heart defect), strengths (interest in music, empathy, friendly character) and problems (logical thinking, social vulnerability, anxiety, depression, impulse control) presents those affected with particular challenges on a daily basis. The aim of the event was to provide people with WBS, their relatives and professional caregivers from the federal states of Saxony and Saxony-Anhalt with a forum to exchange ideas with other affected people close to their homes and to receive information from specialists in practice and research. This should create a social self-help network that specifically incorporates regional structures and state-specific regulations. This cannot be achieved by a nationwide network within this specific framework.

It was the first meeting of this size in the new federal states. With 20 speakers and numerous volunteers from the Faculty of Social Sciences, around 130 people took part in the meeting. The meeting was organized and held in close cooperation with the Bundesverband Williams-Beuren-Syndrom e.V. (Federal Association for Williams-Beuren Syndrome).

The project was mainly financed by the AOK Plus self-help grant. Thanks to the generous trust and commitment of AOK Plus, it was only possible to realize the extensive program for the number of participants. AOK Plus also covered the majority of the families' accommodation costs. This meant that there were no financial barriers for the participating families.

The four curative education students Caroline Möbius, Jasmin Eisold, Nancy Pätzold and Sonja Jähnig organized the event as part of their project studies. The project was led by Prof. Dr. Ingolf Prosetzky and Dipl. Psych. Vera Danielsmeier In order to design the meeting according to the wishes and needs of the families, the project group sent out a questionnaire at the end of last year. These results helped to estimate the number of participants and interests in advance.

On Friday, the participants were given a guided tour of Görlitz, and on Saturday and Sunday there were lectures, workshops and discussions with experts. There was also space for discussions and private networking in a family setting. This was accompanied by an age-appropriate entertainment and support program that enabled caregivers to participate in the events without restrictions.

The visitors actively took advantage of the various offers, so that the professionals could also benefit from their experiences. The children and young people also had a lot of fun with the numerous leisure activities, such as climbing, a visit to the zoo, musical workshops and many more. However, not only the participants, but also the helping students had a lot of fun at the meeting and were able to gain some practical experience.

Evaluation forms from the student project group showed that the aim of the meeting, to provide families with a forum for exchange, was achieved. Special thanks also go to the sponsors: Edeka Schneider from Kodersdorf, Kaufland Görlitz, Tagesmutti Doreen Pätzold and Landskron Brau-Manufaktur Görlitz for their donations in kind as well as Skoda Autohaus Görlitz (owner R. Kohli) and Sparkasse Oberlausitz-Niederschlesien for their monetary donations.