A BIT ABOUT US
Working Towards a Better Tomorrow
The Huntington's Disease Association Auckland is a not for profit charity supporting individuals and families affected by Huntington's Disease.
Founded in the early 1980s, our aim is to maximize the quality of life of people living with HD by:
- Ensuring those who need it get the right support services and medical attention;
- Enabling others to understand the disease; and
- Furthering research to manage and cure Huntington's Disease.
DISCLAIMER:
*This page is not the appropriate route to seek medical advice. If it is medical advice you are wanting do not hesitate to call 0800 43 28 25 (0800 HDAUCK)*
HDA STAFF
The Faces of Our Organization
JO DYSART
CEO, Manager
CHEENEE MANDAWE
Support Worker
JENNA-LEA ROSE
Administrator
Our Patron
SIR RICHARD FAULL
MEET THE TEAM
Committee Board Members
JANINE BUTTERS
Board Chair
My name is Janine Butters I have been involved with the AK HDA for many years as a committee member and currently as the Chair.
I have family involvement with HD so in light of this I am committed to helping and supporting the HD community in finding a cure for this devastating disease.
My other interests include singing in a community choir, dancing (not currently) reading a good book, riding my bike ( an E bike is calling me) and travelling.
I work as a merchandiser which keeps me fit and active, and enjoy meeting and helping people.
EMMA
Secretary
Dr Emma Burnip is the Secretary of HDA Auckland, and has been a committee member for more than two years. Emma qualified as Speech Language Therapist in the UK eleven years ago. She went on to specialise in adult neurology, particularly supporting individuals with neurodegenerative conditions such as dementia, Parkinson's disease and Huntington's disease. Emma'a family has been touched by HD, and with first hand experience of watching loved ones change and seeing many families struggle with a lack of treatment options, she was inspired to help people with swallowing and communication difficulties with HD. So, in 2017 she moved to New Zealand to undertake research in Speech Language Sciences at the University of Canterbury. She recently completed her PhD in swallowing assessment and rehabilitation in individuals with Huntington’s disease and is dedicated to raising awareness of swallowing treatment for people with HD. Emma is now based in the beautiful Queenstown-Lakes District, but continues to support HDA Auckland remotely, maintains strong relationships and travels to key events when possible.
CLAIRE AND JOE
Committee Board Members
We joined the HD Committee as we wanted to be further involved with this awesome organisation. Joe is gene positive and we don't want to let that stop our family from being able to do what we want. By being part of the team it means we can have a positive impact on the group as well as be involved in up to date research. We are also having our first bubba in August, a wee girl, and went through genetic testing at 12 weeks to confirm her diagnosis which is gene negative! Very excited to be apart of this group and to meet everyone in June for the conference!
AMY
Committee Board Member
Dr Amy McCaughey-Chapman is a Post-doctoral Research Fellow at the University of Auckland’s Centre for Brain Research.
My research is focused on using a technology called cell reprogramming to generate live human brain cells for the study of neurological disorders and development of novel therapeutic strategies. Among the multiple projects that I am involved in, one exciting one is a large Huntington’s disease project in which on one hand we are testing a novel cell-transplantation strategy and in another we are investigating novel therapeutic targets for drug development. With my active involvement in Huntington’s disease research, I was given the opportunity to join the HDA committee in 2019. I am delighted to be part of this committee and its links to the HD community in NZ.