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.
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| Kiwis may be flightless birds, but these two found their way to Munich from opposite sides of the world! |
Linda Thornton & Gina Mullis
