Several months back I had the honor of a formal request from the IPWSO President Pam Eisen to assist two doctors from the Germany with developing and supporting the Provider’s Day portion of the IPWSO International Conference which was to be held in Cluj, Romania. I was also asked to develop a presentation which would not only support what we have been successfully doing within Prader-Willi Homes of Oconomowoc, but throughout the United States in regards to supportive living options. Even with the obvious language and time barriers, we had numerous phone calls and e-mails where we developed the conference plans for the provider section and contacted presenters from all over the world in order to provide the attendees with a solid understanding of what other countries and cultures are successfully doing to support individuals diagnosed with Prader-Willi Syndrome. Bags packed and my presentation safe in my carry on luggage, Marguerite and I were off to Romania to share and receive information with professionals, providers and families from all over the world. I knew little to nothing about Romania and the one travel guide we could find on Romania would soon become our best friend and well used throughout our stay.
Landing in Cluj, Romania and feet safely on the ground, we both looked around and knew that this would be like no other traveling experience we have had. Romania was so beautifully rich in culture; churches and monasteries were built back in the 1600s and still remained in use. Women in their babushkas could be seen standing outside their homes talking over fences or sitting on small benches. In the countryside farmers are still using sickles and horses to tend to their fields Homes with outside wells for their source of water, and limited to no lighting lined the villages. The mountains were beautiful and more often then not, you could see the gypsies or town folks traveling to the bigger cities by horse and cart. In the city, although more advanced, one could still see and feel the horrific impact that the Communist rule had on the people of Romania. It was like being in one of our history books which spoke of Romania; however, the infrastructure had not changed much. Everywhere you went you felt pulled into the culture, driven to know more about the history of the country and the people who lived there. We met so many people during our stay and each played a part in bringing us one step closer to a glimpse of how life was and is.
Prader-Willi Syndrome brought us together, in this culture filled land, and here we shared our common thread; a passion and drive to want to learn more in order to provide the best quality of life we can for individuals diagnosed with PWS. There were 74 countries represented; speakers and experts from all over the world, each bringing a piece of knowledge, each wanting more then what they gave. Our host country opened their doors to allow this opportunity to happen, and they gave so much more then they will ever know.
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