Research News & Updates

New Zealand-based Research projects

2018 - Laurie McLay, Senior Lecturer at the University of Canterbury and Associate Professor Karyn France are carrying out a research project that investigates the effectiveness of treatments for sleep disturbance in children with Rare Genetic Neurodevelopmental Disorders (RGND). The Angelman Network is supporting this study with a small grant and helping to source families to participate in the study. 


2017 - Hemant Thakker has done his Doctoral Research on ‘When I am no longer alive – understanding the wishes, worries and support needs of parents of severely disabled adults.’ The findings of this study will assist in making useful recommendations to policy makers in NZ on designing service models that are both efficient (in terms of cost) and effective in terms of their usefulness to meet the needs of severely disabled adults and their families. The Angelman Network supported this study with a small grant and helped source families to participate.  Here is the link to his final paper on Succession Planning. 


Angelman Literacy Project (ALP) – Erin Sheldon

2015 - The Angelman Network was one of the official sponsors for the Angelman Literacy Project’s 2015 summer road trip – a series of workshops run by Erin Sheldon and held across the USA.  The aim was to provide important source material and research data on Angelman syndrome and Communication. The Angelman Network assisted with the informative publication, Angelman Syndrome for Educators authored by Erin Sheldon.


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