Gina Mullis is a Kiwi, living and working in Ireland. This was her first experience of a PWS conference and she writes...
I was very fortunate to be given the opportunity to attend the IPWSO 5th International Caregiver’s Conference in Munich this year. It was my first time attending and I was unsure of what to expect. Having had little direct experience of working with individuals with Prader-Willi Syndrome (PWS) and their families I hoped to get a broad understanding of the syndrome from a clinical perspective and insights from others already working in the field with respect to evidence-based best practice approaches to providing therapeutic supports and interventions.
The two group workshops I attended on Early Intervention and Aging in People with PWS did give me the broad understanding that I was hoping for at the outset by providing valuable information on the ways in which clinical staff can best support the social, emotional, and cognitive development of individuals with PWS throughout the lifespan. However, the greater insights came out of discussions with parents and care staff working with and caring for individual’s with PWS, all of whom were incredibly generous in their willingness to share their own personal experiences.
Resilience Care are in the process of setting up a residential home here in Ireland specifically for individual’s with PWS and I feel confident and enthused about my role in this enterprise as a result of the knowledge gained and the relationships established at the IPWSO Caregiver’s Conference. I look forward to developing the professional and personal relationships we established at the conference through ongoing dialogue (thank you Norbert and Hubert for the word) and sharing of information and experiences, and can’t wait to see you all again next year in Cuba.
|Kiwis may be flightless birds, but these two found their way to Munich from opposite sides of the world!|
Linda Thornton & Gina Mullis