Page 2

PRESENTATION TO LOUISE

I would now like to recognise the work of John Sackett who behind the scenes has been our webmaster and also working on upgrading our membership data base. In addition to this critical IT role, John has taken on the job as treasurer and I have personally enjoyed working with job as our committee keeps the wheels turning for the Association.

Discussion concerning our insurance needs continued as we seek to balance our level of cover we currently need for Association activities and the cost.  Unfortunately, burdening significant rises over the last few years and now facing a large premium we need to make some hard decisions that will significantly impact on our ability to run such activities as the PWS camp.

While on the topic of the PWS camp, which for many years has been a much anticipated activity, I should say that we are discussing alternative formats, venues and programmes and hopefully the "camp" as such may be relaunched in the not to distant future.

Finally, related to Association Business, we have created to additional roles which I hope we can fill. These are the position of Librarian or information officer, who will advertise and co-ordinate the use of our extensive book and video library to our members, and fundraising co-ordinator - which I guess is self explanatory. These positions are non-elected positions in the association and I am hoping may be something people from our regional areas may be able to take on. They do not need to be primary carers of people with PWS but maybe the extended families or connections of our members with an interest in supporting the Association and thereby supporting the person they know with PWS.

Now turning to the future, what can I say. We are trying to create value for your membership. At the moment we are trying to do that by connecting people whether by meetings or written communication or 'e" communication. The costs required to "communicate" are a significant part of our budget - but they are necessary as communication is core activity of the Association. But the value of your membership can only be realised if our members participate.

As we are all learning, there are many stages in life and when caring for a person with PWS some of these stages need a bit of extra guidance, perseverance and shear grit. But where do we get the guidance when we first encounter a new stage. Who can we call?, where is the information?. The internet these days provides a lot of information but it is not the only source. Personal experience and advice is critical to caring and providing for our friends and family with PWS and this is best achieved by personal connection.

In the last year, I have realised there are a lot of issues that we don't anything about or in which we should much better briefed. What are the needs of our regional members; residential options; what model is best?, how to get funding?; legal and advocacy; financial management and the person with PWS; managing challenging behaviours; siblings; work options and whole range of health and medical issues. How do we get PW on the radar screens of those administrators and policy makers that matter? Some of these topics may not be of relevance to you now but unless we are involved now no information will be available for when you need it.

In conclusion, this last year has seen some changes for our Association. I hope we can build on them. I sincerely thank the outgoing committee: Louise, Malou, John, Morrie and Barry for their support and efforts. I hope the next 12 months will see the Association grow and above all that our members feel that being a part of the Association is a valuable thing.

As a challenge can I invite you to consider who in your extended family or care network may benefit from being a member. Try and introduce one more person to the association this year. They may be helped by learning more about PWS and in turn that may help you.

Return to NSW Homepage