Monday, August 29, 2011

Snippets from our Website

Residential Providers' Resource
One of the most interesting things IPWSO has done over the past three years is the development of our Porfessional Providers and Caregivers' Advisory Board. This was the brainchild of Pam Eisen (our past President) and Norbert Hödebeck-Stuntebeck and Hubert Soyer.  Both Norbert and Hubert are involved with the development and management of residential homes in Germany: Norbert is Co-chair of the advisory board, along with Mary K. Ziccardi (USA) and Hubert is also on the IPWSO Board.

The production of Standards of Care & Best Practice Guidelines is a valuable resource for all residential providers, managerial and hands-on.  This manual starts from the beginning - what are the residential options/what should a house look like and provide, through to the hands-on skills required to manage the characteristics of the syndrome.  It also covers psychiatric behaviours, psychological information, dietary and physical exercise, and is the "Bible" of providers, carers, and stacked full of information for parents and teachers as well.  It's available by contacting us through our website www.ipwso.org.

New Board Members
We are delighted to welcome our new Board members: Georgina Loughnan from Australia, Anil Choubey from India,  Jose Luis Garcia from Chile, and Hubert Soyer from Germany.   IPWSO holds board elections at each 3-yearly international conference and posts are held for 2 three-year periods.  Most of our work is done via email and satelite link-up from all corners of the earth.  We meet face-to-face at our international conferences and, finance permitting, once inbetween times.

PWS Conferences
Three PWS conferences coming up!  Japan - November this year; Australia - March 2012, and UK in July 2013.  Take a look at what is on offer.  Specialised conferences dedicated to the needs of those with PWS and those who care for them, are the life-line to successful living.  Without the expertise and knowledge of those who spend their lives studying PWS, parents, caregivers, teachers, and all those who come into contact with those with the syndrome, we would be hard-pressed to know how to manage the situations with which we are faced. We are lucky in the PWS world to have many extremely knowledgable experts who have got to know not just the syndrome, but the person behind it, and his or her family.  It's this integration between professional and parent that is invaluable!

It's not easy, raising a child with PWS, managing in the classroom, finding the right residential support, and the more we can encourage parents and experts to share experiences, the better off our children will be.  

Knowledge is sustainable, and PWS is unique!









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