The Huntington's Disease Youth Organisation New Zealand (HDYO-NZ) is a voluntary organisation setup to provide support to the youth impacted by Huntington’s disease (HD) in New Zealand, so that they can be knowledgeable, supported, and empowered through a strong community support network and accessible information. In particular, we were set up to provide support to presymptomatic youth impacted by HD, to fill a gap in need before individuals become symptomatic and are supported by their local HD Associations.
HDYO-NZ is affiliated with other HD community groups, including the Huntington’s Disease Associations of New Zealand (Auckland, Wellington, and Christchurch), MS Waikato and MS Taranaki, and HDYO International.
HDYO NZ is currently run by six Board Members and a passionate group of HDYO NZ Representatives.
Chairperson
Stephanie Carr
Steph graduated from the University of Auckland Medical School in 2023 and took a year out to undergo Huntington’s research at the institution’s Centre for Brain Research before joining the medical workforce. She discovered a family history of Huntington’s in 2020, and her experience gave her an understanding of the myriad questions and emotions raised by the prospect of a positive genetic result. She found the year-long process of predictive testing extremely challenging and isolating, until accessing support from HDYO NZ. Despite being blessed with a negative result, the stories she’d heard and the people she’d met meant she couldn’t turn her back on Huntington’s. She’s committed to helping HDYO NZ advance its mission and ensuring that all youth impacted by HD know that they are not alone.
Secretary
Dr Amy McCaughey-Chapman
Amy is a neuroscientist working as a Research Fellow at the University of Auckland’s Centre for Brain Research. Amy’s speciality is in direct cell reprogramming which is a fancy way of saying that she can convert adult human skin cells into brain cells. Amy has been working in the Huntington’s disease field since 2018 and her main focus is now on the involvement of oligodendrocytes (an important and very cool non-neuronal cell type of the brain and spinal cord) in neurological disorders, including Huntington’s disease.
Amy has been a committee member of the Huntington’s Disease Auckland Association since 2019 and is excited to maintain the connection between HDA and HDYO-NZ.
Treasurer
Lauren Smith
Lauren is a Licensed Immigration Adviser dedicated to guiding migrants through the visa process in New Zealand. Her journey with Huntington's Disease (HD) began years ago when a friend underwent genetic testing, shedding light on the profound impact HD has not just on gene positive people, but their families, and especially those grappling with the decision to get tested.
With a background in bookkeeping and nonprofit work, Lauren is looking forward to assisting with HDYO NZ's mission.
Leanne Knox
Leanne represents the families as she knows all too well the impact of being bought up in a family with Huntington’s Disease. Her Mum has the disease along with an Aunty and Uncle in Australia. It’s her passion to see a community created for youth impacted by HD so that they don’t feel alone. Leanne was bought up in the Waikato and now lives in Auckland where she enjoys her job as the Young People Lead at Sport Auckland.
Leanne also manages the Auckland relationships.
Dr. Malvindar Singh-Bains
Malvindar is a Neuroscientist working at the Centre for Brain Research at the University of Auckland, where she is passionate about unlocking the secrets of how Huntington's and Alzheimer's disease affect the human brain. Outside the laboratory, Malvindar is dedicated to doing anything to help those affected by HD, spearheading public awareness campaigns and fundraisers for her local HD Association for many years. She's been a top 3 finalist for the Young New Zealander of the Year award for 2015 and 2016 for her ongoing commitment to promoting brain health and brain disease awareness across NZ.
Dr Samantha Murray
Samantha is a neuroscientist specialising in neurodegenerative diseases. She completed her PhD studying Huntington’s disease at the Centre for Brain Research at the University of Auckland in 2017. Samantha has both a professional and personal interest in HD and is passionate about raising awareness of HD in the community. She is particularly invested in ensuring young people impacted by HD are educated, supported, and connected with one another.
If you’d like to be an HDYO NZ Representative please contact us
