April 19 2018
The IHC Foundation and the Deane Endowment trust have made generous donations to make the conference free to parents.
Distinguished Prof John Weaver and Mrs Joan Weaver have made a generous donation to help with Susan Norwell's airfares.
Many people and Hooligans Car Club gave money in memory of Nikky van Rooyen, Terri Lee Browning and friends fundraised to help with Susan's appointments which will not cost families. The King family have been very generous
Our Bankers ANZ made a donation to help with the Conference.
We are grateful to JAG CONSULTANTS our Website specialists who are so ...
April 19 2018
We are so grateful to Dr Rosemary Marks for her on going care and experience she shares with the Rett Families.
A number of families said they were interested in the genetics of Rett so Rosemary has arranged a Geneticist to start the conference.
We are almost there with the formal programme. Just a few tweaks so everything can be fitted in.
Wendy Brenkley has a very interesting afternoon about care and packages which can be used to help your family access funds to help with your daughter's care.
THe amazing Susan is back again and we are so ...
October 30 2017
We are working on the Conference Programme for 2018 and hope you all have put the date in your diaries.
We will be sending a letter to you so you can tell us whether you are coming....
August 30 2016
Robert and Margaret and their lovely children are in our thoughts as brave Nikky slipped away yesterday afternoon.
In 1997 the van Rooyens organised a wonderful day where we all got together to meet a Swedish Rett expert who had worked with Dr Hagberg who was one of the co-authors of the original papers on Rett.
Yvonne posted a photo from that day a little while ago on facebook.
Robert had been to Zjuska's memorial day on Saturday. Rett parents know how others are feeling at this very sad time...
August 24 2016
I was reading about a signaling pathway that Harvard stem cell scientists were working on to correct a faulty signalling pathway in Rett.
Mike replied explaining how the ground breaking work in Auckland relates to aspects of this research.
Mike writes"Interesting article. We don't study the particular pathway ourselves directly but the "antennae" that they are talking about are the dendritic trees that the neurons have. In developmental disorders and also in the aging and diseased (Alzheimer's) brain these "dendritic arborisations" (much like the large, small and very small branches of a tree) become less developed and ...
August 22 2016
It is hard to believe it is a year since Zjuska left us. We will be thinking of Yvonne and her family thinking of all that Zjuska meant to us all and how much she enjoyed her wonderful family...
August 17 2016
We are all feeling for the new family who have become part of our NZ Rett family. We all remember how difficult it is when we find out the reason we have been noticing the difference in the behaviour of our girls. ...