New Zealand-based Research projects

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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

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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.

 

Global News Articles

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• Anavex Life Sciences Reports New Data for ANAVEX 2-73 in Neurodevelopmental Disorders Including Angelman Syndrome: Data Presented at Antiepileptic Drug Trials XIV 2017 Conference

• Neuro Drug Developer Ovid Therapeutics Files for $86M IPO

• Ovid begins phase 1 trial of OV101 in adolescents with Angelman Syndrome/Fragile X Syndrome

• A-BOM: Angelman Biomarkers & Outcomes Measures Alliance. A-BOM is a new concept that serves as a collaborative community in Angelman Syndrome research

• Stem cells can help identify neuronal defects, suggests study

• PROMETRIKA to present poster on Angelman Syndrome Natural History Study results at Annual American Academy of Neurology Meeting

• Dietary Treatment Proven Successful in Reducing Seizures in Angelman Syndrome by up to 90 Percent

 

AS Research-focused Websites

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• Angelman Syndrome Information Page - What research is being done?

• Clinical Studies for:  Angelman Syndrome

 

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