March 31 2010
RettNZ - Trustees Annual Report 2010
For quite some years, our President Rob Pakes major drive has been for a National Clinic to be established which would coordinate and assist with the medical diagnosis and professional guidance for girls with Rett Syndrome and help their families understand the Syndrome and the way they can best care for their daughters. The Ministry of Health is working towards Managed Clinical Networks for families with Rare Disorders, with some pilot schemes getting underway.
We are working with NZORD (the NZ Organization of Rare Disorders) in the expectation and hope that Rett Syndrome will be included in one of these networks given that our families are located all over New Zealand. Such a Network would concentrate the medical and other professional skills needed in one location in such a way that this would help ease the problems we have at present of girls and their families having often to consult such a wide range of doctors and other experts, with these specialists in turn being located in a variety of places.
The Lottery Grants Commission generously granted funding to help towards Megan and Rob Pakes going to the International Rett Conference in California in February 2010. Rob has reported on the conference and how valuable it was for families to gain up to date information. The information on speech assisted technology has been improving and should be a great asset for the future.
Mark Campbell has been working on relationships with Cure Kids and gained a booth for Rett NZ at the National Paediatric Conference in Hamilton in November. Dr Rosemary Marks, the President of the Paediatric Society, gave a lecture on Rett Syndrome which will remind Paediatricians of the symptoms and challenges of Rett Syndrome. This was a very valuable awareness raising activity. Mark and Dugald MacBrayne were kindly on hand to answer questions.
The year between conferences is one of planning the next conference which always has a long lead time. Dugald and Doug Laing had heard Susan Norwell speak at the Chicago International Rett Conference. They were determined to make the arrangements for Susan to visit New Zealand and for the parents and teachers to benefit from her vast knowledge and infectious personality.
Dugald planned Susan's visit with meticulous care and it was intended that she would meet as many families as possible. Many parents asked about the timing of the next conference to ensure they have their child-minding plans in place.
Susan will speak to the parents and then travel around the countryside with Dugald and Christine to visit parents so they can see how Susan works with the children. The Trust is grateful to Dugald for his diligent work to allow families to take advantage of Susan's expertise.
Mark has negotiated a good price for the Hotel in Ellerslie in Auckland very close to public transport. The Trust is appreciative of Mark checking out this facility for families. Because many of the families are within driving distance of Auckland it was decided that Auckland would be the best place to make use of Susan's valuable experience and knowledge.
We are very grateful to Dr Phil Palmer who is the Grandfather of Evie who lives in London. Phil cycled from London to Paris and raised $6600 for our conference. His friend Dawn Ibbotson in Dunedin generously donated the airfare she was going to use to attend her grand daughter's wedding in Europe, while the Year 8 Religious Studies class at Diocesan School in Auckland raised money to help with Susan's visit to families. Emma Campbell motivated her class mates and they worked hard to give this very welcome donation. Pakeke Lions of Kapiti gave a donation to help with expenses on the Susan walkabout.
Doug has been busy looking after the finances and providing helpful information about the girls' right to education and liaising with Fiona Rammell who visited Alysha Pakes's school to help her teacher and teacher aides with ideas.
Gillian has been working with NZORD on the framework that Clinical Networks may develop to fit them into the current thinking within the Ministry of Health.
The RettNZ Trust income for the year ended 31 March 2010 was $12,313 and our expenditure was $6,525 providing a surplus for the year of $5,788. The closing cash balance was $24,430 which when added to the bank term deposit of $100,000 and other items means the trust's total net assets were $130,919 at the end of the financial year.
The trustees are Rob Pakes, Mark Campbell, Doug Laing, Gillian Deane and Dugald MacBrayne. After the end of the financial year, Rob resigned to devote more time to his family and he graciously agreed to continue as one of our Ambassadors. Mark Campbell is our new Chairman, Doug is Treasurer, Dugald is Project Coordinator and Gillian is National Coordinator. More information about the RettNZ Trust can be found on the New Zealand Charities Commission web site.
The Rett NZ trustees wishes to thank all of those who support them in helping families to provide a warm, loving and interesting life for the girls.