Welcome to the Website of Rett New Zealand
This website provides information and support for families affected by Rett syndrome.
You will find here information about Rett New Zealand, a brief description of Rett syndrome, links to current research and links to other useful sites. We have also added a page for personal stories and other contributions for families to share their experiences.
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Do you have any comments or questions about Rett syndrome? Please send us an e-mail at firstname.lastname@example.org
A visit to the Brimble Lab to see where Trofinetide (NNZ-2566) was discovered
Distinguished Professor Margaret Brimble of the University of Auckland has given two lectures at the Rett NZ Conferences.
In May 2016 Professor Brimble invited our Rett NZ Trust Chairman Dugald MacBrayne and Rett NZ Coordinator Gillian Deane to visit her laboratory to see how the drug NNZ-2566 or Trofinetide was discovered and to meet the staff members who helped with its discovery. There are no current approved medicines for the treatment of Rett Syndrome.
Read more about Margaret Brimble and Trofinetide (NNZ-2566)
Look who supports Rett Syndrome
Julia Roberts became committed to helping find a cure for Rett Syndrome after meeting Abigail Brodsky, a young girl battling the disease. Julia appeared in the Discovery Channel's Silent Angels: The Rett Syndrome Story and testified before Congress about the need for more research on the crippling neurological disease.
Rose Hill Designs: Believe in a Cure
Illustration by Heather Stillufsen
March 24 2017
Success of second clincial trial with Trofinetide
The Rettsyndrome.org and Neuren released the details of their second clinical trial using Trofinetide.
March 20 2017
The Diagnosis we all went through
An interesting article we can all relate to about receiving a diagnosis.
We have four new families who have joined us so they will be experiencing these feelings.
We are thinking of them all and the journey they are on to learn about unconditional love
September 18 2016
Rett Annual Report to March 31, 2016
We were so sad that Z'juska Beaudine became a Rett Angel as she had been part of our Rett family for so long. The photos of her 21 birthday were so beautiful and we could see how she was loving being all dressed up for the occasion.
Sometimes it seems their bodies have fought so bravely they just become too tired.
September 18 2016
Towards a Clinical Network
Dr Rosemary Marks & Dr Haemish Crawford suggest further development of assessment of our girls and women at the 2018 meeting.
September 3 2016
Fascinating tweet from Canadian Rett
A few families have this rare gene which throws information on the Huntington gene
August 22 2016
NNZ-2566 in Rett Syndrome
For those of us who trawl the websites trying to understand where the clinical trials are and the age groups of the present ones, this is very useful.
February 15 2016
Music before language
An article telling us about the parts of the brain that respond to music have been there for thousands of years. It appears that Flutes were made before Cave Paintings.
November 25 2015
Study suggets MECP2 duplication syndrome is reversible - research led by Prof Huda Zoghbi
There are two antisense drugs on the market which are being tested in clinical trials