March 31 2009

RettNZ - Trustees Annual Report 2009

Momentum 2008 was held in the 2009 financial year. Parents really enjoyed the wonderful lecture by Prof John Christodoulou. Since his lecture he has been awarded a high honour by the Australian Government. We were pleased to be able to write a letter of support to say how he had come at a weekend to talk to us and to give us very good advice and up to date information. His scientific material was easy to assimilate. We were pleased to hear from Fiona Rammell about educational ideas, from Trica Grant of IHC on adovocy and to receive beautiful and useful information packs free of charge. The Father's forum was very interesting, clever and emotional. Parents enjoyed being able to swap stories and ideas.

2010 Conference Planning has been on the minds of the Trustees. The Conferences give families an opportunity to meet and share stories as well as to hear the latest update on medical and educational information. Dugald MacBrayne contacted Susan Norwell who specializes in communication therapy for Rett and Autistic clients. We are so fortunate to have her to come to New Zealand to talk to parents and then to travel to the four main centres to see the families on an individual basis.

Managed Clinical Networks has been a buzz word around the world to streamline the process of rare disease groups living in different parts of the country. As one of NZ leading developmental Paedatricians said she has so many syndromes to deal with parents are often more expert by being able to read about the condition on the internet. Rett is part of the New Zealand Organisation of Rare Diseases which has been liaising with the Ministry of Health to implement clinics and follow up from the clinics.