HDYO NZ is a voluntary organisation setup to provide support to the youth of New Zealand impacted by Huntington’s disease. Our aim is for the youth of New Zealand impacted by HD to be knowledgeable, supported, and empowered through a strong community support network and accessible information.
HDYO NZ is affiliated with other HD community groups, including the Huntington’s Disease Associations of New Zealand (Auckland, Wellington, and Christchurch) and HDYO (International).
HDYO NZ is currently run by six Board Members and a passionate group of HDYO NZ Representatives.
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.
Malvindar manages the Wellington relationships
Dr Samantha Murray
Samantha is a neuroscientist studying Huntington’s Disease at the Centre for Brain Research at the University of Auckland. She first became interested in HD and HD research when she met a family friend with HD, never having heard of HD before. Now Samantha is passionate about not only researching the disease and working towards finding treatments for HD, but also raising awareness of HD in the community.
Samantha also manages the Christchurch relationship
Dr. Nasim Mehrabi
Nasim is a Neuroscientist at Centre for Brain Research at the University of Auckland. Nasim is extremely passionate about understanding how Huntington’s disease works, and how we can treat it. Her passion for HD grew bigger as she met more Huntington’s disease families, and got more involved with different fundraising events and campaigns associated with Huntington’s disease.
Micah Daniel Austria
Daniel is a neuroscientist studying at the Centre for Brain Research at the University of Auckland. After seeing how much Huntington's and Alzheimer's disease impacts the lives of the patients and their loved ones, he is driven to work tirelessly in the lab in the hopes of better understanding how neurodegenerative diseases initiate and develop in the brain. He is also very passionate in developing public awareness of these diseases and in working with affected families.
Allison is our most recent addition to the HDYO NZ Board. She returned to NZ last September after living overseas in London and France for 6 years, she made the move home to finish her studies as a counselling psychologist and support her family. Allison knows all to well the devastating impact that Huntington’s has on the individual, their close relatives and friends. Her Grandfather died 15 years ago from Huntington’s, her father and aunt are symptomatic and her brother was diagnosed 2 years ago. She has also just begun her own diagnosis journey. Her need of support led her to discover HDYO NZ, and she wants to use her own experience with Huntington’s and 6 years study in the area of psychology to help contribute to providing care and support for those in need.
If you’d like to be an HDYO NZ Representative please contact us