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Neuren’s NNZ-2566 drug (renamed Trofinetide in late Jan 2015) as a treatment for a small Rett syndrome population of adolescents and adults, is found to be of benefit. Updates on Trofinetide are also provided.

Posted by Bill Callaghan in News

  Neuren Pharmaceuticals Ltd, whose head office is located in Auckland, is a biopharmaceutical company developing drugs for treatment of brain injury and neurodegeneration. One pharmaceutical being developed by Neuren and which is being trialled as a possible treatment in Rett syndrome, is NNZ-2566 (since renamed Trofinetide). This drug is a…

May 2016, Brisbane – Presentations and workshops given by Susan Norwell (USA), a specialist on communication in Rett syndrome

Posted by Bill Callaghan in News

Susan Norwell M.A. Special Education, has spent the last 27 years in private practice working primarily with children on the autism spectrum and girls who have Rett syndrome. Her current focus is in teaching literacy skills for children with significant disabilities who are unable to speak, utilising augmentative communication…

Overseas conference representation during 2016 – Members of the RSAA Committee attended Rett syndrome conferences in Russia, New Zealand and Austria

Posted by Bill Callaghan in News

RSAA was represented at the May World Congress in Kazan, Russia, by its Vice-President Claude Buda and Committee member Tony Cagliuso. Both are fathers who have a daughter with Rett syndrome, Annelise Buda is 6 years old and Raquelle Cagliuso is 23 years of age.                          Tony…

Restraint is a positive intervention in the management of Rett syndrome

Posted by Bill Callaghan in News

Recently, RSAA became aware of a number of Victorian parents who were being advised to stop restraining their Rett syndrome children and adults, as too were carers. As to why this sort of thing is still happening is hard to understand, as splinting, which is the most common  method used in Rett syndrome to manage hand behaviour, is an…