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September 1 2011

Rett NZ Chair Letter Sept 2011

The last year has been one of planning the next conference from 12-14 May 2012. The Trustees decided with the recession as most of our families live within driving distance of Auckland it was prudent to hold the conference at the IBIS Ellerslie again. We were able to negotiate a good rate for RettNZ.

The feedback from Susan Norwell's visit has been so positive as she gave us insights into how the girls respond and how long it takes for them to respond to our questions. Technology has improved in that time and we hope the ipad will give the girls an opportunity to have fun responding to our questions and expressing their wishes more clearly.

At the moment the country is in the grip of Rugby World Cup and I have heard a number of the girls enjoy watching the games. The outcomes are like the lottery of life there are always some surprises!

As well as Susan helping us with communication skills we hope she will also be able to meet teachers and speech therapists so they are aware of the techniques which can be used to help us to understand the needs of the girls when they are expressing their preferences.

Many of you have had questions about Scoliosis. RettNZ Ambassador, Haemish Crawford will be talking about the nature of the operation, the outcomes and the benefits of having the operation at an earlier age than was once thought desirable. Jean will talk about the parent point of view and as a nurse how her experience helped with one of Harriet's post op orthopaedic glitches.

Some of you have been thinking about Trusts for your children and Roderick will talk about options and how to set them up. Leaving our children is always a question in the back of our minds.

As well we will have the opportunity to renew friendships, to share information and to gain new insights into Rett.

A very interesting paper from the Salk Institute on Rett reminds us that many prestigious research groups are working on a solution. We continue to follow this information as you do and day to day learn so much about the nature and meaning of life.