July 1 2020
A tribute by Dugald MacBrayne on behalf of all the Rett families...
Last Monday, Christine and I were fortunate to be able to attend the celebration of Becky Greig's life at Waikumete Cemetery. What a sad but truly wonderful and moving occasion. The Chapel was completely filled by friends and family, young and not so young. Becky clearly touched the hearts of all she knew very deeply. She, as do all of her Rett sisters, has left a legacy of love for many to treasure in the warmest corners of their hearts. All of the lovely tributes spoke of ...
May 29 2020
What a relief it is to come out of Stage 3 into stage 2. It was exceptional hard for families to cope and a number of you had extremely difficult challenges.
We are so grateful none of our families were affected and this was due to such diligence on your part.
It is a beautiful sunny day here which always has the promise of better times ahead....
May 29 2020
The International Rett Society organized a Chat with the eminent Scientist Prof Sir Adrian Bird at 7am NZ time. I kept waking up every few hours to ensure I did not miss hearing him.
Sir Adrian talked about his beloved, family, cooking and eating and photography. It is always fun to see into the lives of these very clever scientists.
To add to his long list of awards he has just been awarded the BRAIN PRIZE jointly with Prof Huda Zoghbi who discovered MeCP2 relationship to Rett Syndrome.
Sir Adrian talked about his early studies with methylation.
New experiments showed ...
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...