Through the inspirational leadership of Pam Eisen, the International Prader-Willi Syndrome Organization recognized the need for providers to have their own gathering in order to network and share their expertise and strategies to better enhance the quality of life for individuals with PWS. In 2008 Marguerite Rupnow and Jackie Mallow were part of the first ever stand alone international caregivers conference where they presented on Environmental Supports for People with PWS in the Residential and Vocational setting. These two elements were apart of a whole series of topics which would set the stage for developing an internationally supported “Guidelines for Best Practice”.
This conference offered such a unique opportunity to collaboratively network, that the conference supporters, Norbert Hödebeck-Stuntebeck and Dr. Hubert Soyer agreed to host a 2009 conference in order for continuation of the “Best Practice” development. Jackie Mallow once again had the honor of presenting and facilitating in this world wide effort. It is the hopes of IPWSO that the collective findings and finalized guidelines will be presented at the 2010 international conference to be hosted in Taiwan.
In addition Jackie had a wonderful opportunity to tour Regens Wagner in Absberg, Germany where they specialize in providing residential, vocational, and farm-life opportunities for individuals with PWS. “It was inspiring to see that our German colleagues, who are oceans apart, care as deeply as we do to provide quality homes and services.” Dr. Hubert Soyer was a gracious host as he shared not only his programs but his true passion for all the lives he has touched and that have touched his.
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