Megan and Rob Pakes have ensured October 2006 was a month to remember for Rett New Zealand. They asked Mike McRoberts of TV3 fame to help them to publicize the nature of Rett Syndrome and the inspiration the girls and young women who suffer from this complex condition are to their friends, families, teachers and therapists. Mike McRoberts started the ball rolling with his fundraising page [fundraising over] on the internet where he has raised nearly $4000 for this important conference. We are so pleased that Mike Mc Roberts has graciously agreed to become the Patron of the newly named RETT NEW ZEALAND.

Within the next few weeks Megan and Rob, with the help of friends and supporters hope to have raised around $40,000 to enable a conference to be held in the autumn on 2007 in Rotorua and to help continue the research programme on Rett Syndrome. Kathy Hunter, the President and Founder of the International Rett Syndrome, has agreed to come to New Zealand to speak to the parents and meet the girls and young women with Retts. Kathy is on the board of the prestigious National Institute of Health situated close to Washington DC in the United States, as well as being a mother with so many helpful ideas for parents. Her last visit to New Zealand which was sponsored in memory of Kristen Deane helped parents to solve many problems as well as make difficult decisions about such matters as scoliosis surgery.

Dr Michael Sullivan who has organized the genetic testing for New Zealand families will talk about genetics and the research being undertaken. He is a brilliant scientist and cancer specialist but has a wonderful gift of being able to describe complex issues in simple language.

We are hoping Mike McRobert’s orthopaedic surgeon, Haemish Crawford, will be able to speak about the skeletal problems in Rett Syndrome. He has kindly offered to help us with advice. We are so touched by so many offers of help.

We are launching a membership drive where families who are members of Rett New Zealand will have their conference accommodation and fees well subsidized. It is time to start saving for fares or fundraising in your local community.

At the fundraising dinner for 1000 Angels the group of parents and supporters agreed to set in train the process to become an independent group called RETT NEW ZEALAND. We are working on a charitable Trust Deed to meet the requirements of the Inland Revenue Department and the Charities Commission. We will keep you informed of our progress. We would be grateful if you could email us if you would like to join at a cost of $20 per year per family. Of course friends and supporters are welcome to join too but for the conference I am sure they would understand that it is the parents who would be the ones who would be eligible for the accommodation and fee package. The conference would gladly accept registrations from the wider support group; however, I am sure they would understand we need to cover the costs of the conference budget.

The dinner was a beautiful evening full of love and thoughtfulness for the girls and their families. There were so many wonderful sponsors which Megan and Rob approached for help. Alysha is having her tonsils out this week so we will be thinking of them as she is in Starship Hospital. A wonderful auctioneer, Carey Smith of Ray White the leading real estate firm in Auckland, made the auction great fun and raised over $17,000 from items which people like Team New Zealand, Toll Racing Drivers and Jock Hobbs of the Rugby Union had signed shirts which were keenly sought after. On the feminine side Trelise Cooper gave a most beautiful silk coat which Megan’s friends won and will look forward to wearing after her baby is born next month. Wonderful ideas such as garden makeovers were keenly sought. Mike McRoberts offered a visit to the TV3 studios and to watch live the news reading at TV3.

Many thanks to the wonderful Toll truck drivers who have been so generous to the cause with paying a “TOLL” to help promote Rett Syndrome Research. We will have a total to give you next week.

We are very appreciative of the generous contributions all our supporters gave so generously and to those who came to make the evening such a success. Toll New Zealand and Rydges Hotel Rotorua made this an evening to remember and there is already a list of people who have their places booked for next year’s gala occasion. Parents and supporters from as far afield as Auckland, Gisborne, Ngatea, Cambridge, Tauranga, Dunedin and Wellington greatly enjoyed seeing each other again.

While we have all been busy working for the future we have been feeling so sad for Joanne Knight’s family as Joanne passed away last month. We have been sharing the pain of her finding rest from her frail body. The Knight family, Mary Still, Mr Power and Mr & Mrs Vartha have given donations in memory of Joanne which will help to sponsor Kathy Hunter’s visit to New Zealand. We remember the Knight family as they are coping with their sad loss.

At a meeting of parents held on Sunday 29 October, 2006 in Rotorua it was agreed that the first Committee of Rett New Zealand would comprise:

President: Rob Pakes of Tauranga rpakes@tollnz.co.nz
Vice President: Mark Campbell of Auckland mandj1@xtra.co.nz
Treasurer: Doug Laing of Wellington doug.laing@nbnz.co.nz
Fundraising Chair: Megan Pakes of Tauranga pakes@slingshot.co.nz
Research Cordinator: Stephen & Vicky Low of Ngatea stephenlow@xtra.co.nz
Education Chair: Jean Campbell of Auckland (including Musical Therapy)
Vocational Chair: Christine Morrison of Gisborne vcmorrison@xtra.co.nz
National Coordinator: Gillian Deane of Wellington gillian_d @xtra.co.nz
Auckland Coordinator: Jean Campbell of Auckland mandj1@xtra.co.nz
Hauraki Coordinator: Jan Low of Ngatea stephenlow@xtra.co.nz
Otago Coordinator: Valeaha and Kevin Marks lkma@ihug.co.nz

Please email info@rettsyndrome.org.nz or place a message on the Forum page of RETT NEW ZEALAND at http://www.nzordforums.org.nz/index.php?c=2 if you are able to help or if you would like more information. Please note that our new name RETT NEW ZEALAND will replace our former name New Zealand Rett Syndrome Association.

We would be grateful for help in each area with lists of families, care givers, GP’s and Paediatricians who understand the nature Retts Syndrome. If you can email us this type of information for our database this would be very helpful.

For those families needing anesthetics for operations or dental treatment Kathy Hunter has sent the reference to an article which should be helpful to keep, especially if you live in a smaller centre where Rett Syndrome is rare.

Gillian Deane
October, 2006