An Update from RETTNZ
October 2009

Planning is underway for the May 2010 conference in Auckland on May 14–15. Details of the location will be sent to you and on our website early next year. Dugald has persuaded Susan Norwell to come to speak on Communication. It is such a big issue. Susan has also said she will be available to meet parents and girls so Dugald is taking annual leave to go to four centres for meetings. Please let us know if you are able to help with suggestions for venues (preferably free) to meet. An interview with her is on the following site: www.ucpnet.org/images/coalition/TX/Susan Norwell.mp3.

Meanwhile, Mark Campbell has been given the opportunity for RettNZ to have booth at the Paediatric conference in Hamilton. This will be an excellent opportunity to be able to promote awareness among Paediatricians.

Kathy Hunter’s brother died suddenly and she has been feeling his loss. Kathy’s email is kathy_hunter@verison.com. He sounded such a lovely man who was very involved in helping with racial prejudice in Washington DC.

The Close Up programme with Amy and Paige was watched by many viewers and was excellent in promoting awareness of Rett Syndrome. Sonia, the producer came from Adelaide and had followed the story of the daughter of an Australian gold medal cyclist and his wife who had a daughter with Rett. She died in June and Sonia thought she would like to increase awareness about Rett in NZ. She found the stories on our website and chose two of them.

Rob Pakes plea for a National clinic is being heard. In early November, the Organization for Rare Disorders is meeting with members of the Ministry of Health to discuss ways in which such clinics could be set up. Dr Murray Horn the Chair of the Horn report on Health has been invited to present his ideas on how he sees this happening under the new structure. Representatives from the various groups with needs such as Rett girls have are being invited to attend.

Benedict Chapman, webmaster, has given our website a whole new “look.” Many thanks Ben as so many people have told me how interesting it is and how they like keeping up to date with Rett news.

We are so grateful to Dr Phil Palmer for his fundraising for Rett NZ and Rett UK. We are very grateful to his grand daughter Evie for inspiring him and to the many people who contributed to his cause, especially Mrs Dawn Ibbotson of Dunedin.