Our Research

From Arthur Young, Chairperson

In 2011, MDANZ formed a research trust to advance and fund local research for the benefit of New Zealanders with neuromuscular conditions.  The Trust (formally known as the Neuromuscular Research Foundation Trust or NRFT), is the principle sponsor of the New Zealand Neuromuscular Disease Registry and distributes funding* for projects that address MDANZ’s four  current research priorities - standards of care; habilitation and rehabilitation; New Zealand prevalence and incidence of neuromuscular conditions; and, treatments and cures

Our Trustees

 Arthur Young, Senior Partner, Chapman Tripp

Associate Professor Richard Roxburgh, Neurologist, Auckland District Health Board and School of Medicine and Centre for Brain Research, University of Auckland 

Associate Professor Graeme Hammond-Tooke, Neurologist, Southern District Health Board and School of Medicine, University of Otago

Professor Leigh Hale, Dean, School of Physiotherapy, University of Otago

Dr Alexa Kidd, Clinical Scientist, Canterbury Health Laboratories, Canterbury District Health Board

Dr Gemma Poke, Clinical Geneticist, Genetic Health Services New Zealand, Wellington

Dr Tristram Ingham, Senior Research Fellow, School of Medicine, University of Otago, Wellington

Our Year

During 2016 the Neuromuscular Research Foundation Trust (NRFT) refreshed its logo and brand, to become more consistent with the Muscular Dystrophy Association.  The NRFT was the principle funder of the New Zealand Neuromuscular Disease Registry, which achieved a milestone of more than 900 enrolments and multiple enquiries from research entities. It was also the principle funder of Impact CMT, a study identifying the prevalence and impact of living with Charcot-Marie-Tooth disease (CMT) in the greater Auckland Region.  The research trust awarded one postgraduate scholarship for a MPhil student at Auckland's University of Technology (AUT) examining employment outcomes for people living with myotonic dystrophy.   A grants funding round was held in the final quarter of the year, and seven applications were received.  The Trustees awarded three research grants, which will be expended in 2017.  To view a copy of the Annual Report, please click here.

*Grants distributed by Neuromuscular Research New Zealand are made possible through the generous contributions of individual donors and the Richdale Charitable Trust.