Youth Connection Program grant from…

We are very pleased to announce that we have received a generous grant from Ansvar Insurance Community Education Program to run our Youth Connection Program for a further 12 months.

Thanks so much Ansvar!

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Latest News and Stories

Our submission to the Disability Royal Commission

Published date: 29 July, 2020

Five Huntington’s state associations have collaborated on a submission to the Disability Royal Commission. You can download and read the submission HERE.

HD News Winter 2020 published

Published date: 16 July, 2020

Please download your copy of HD News Winter 2020 HERE Renew your membership before 31 July to be in the ballot for a free weekend in a donated holiday house near Wollombi! Smart new website launched Dancing at the Vatican documentary  free tickets Free holiday house stays ballot with membership renewals Hunt 4 Hope Op ... Read more HD News Winter 2020 published

We’re hiring – Marketing & Fundraising Coordinator (re-advertised)

Published date: 8 July, 2020

Huntington’s NSW ACT is recruiting a part-time marketing & fundraising professional due to the forthcoming resignation of the person currently in this role. Position start date: late August. Long hand-over, with incumbent leaving at the end of October. Huntington’s NSW ACT is a small but vibrant charity, serving people living with Huntington’s disease and their ... Read more We’re hiring – Marketing & Fundraising Coordinator (re-advertised)

Neurological Alliance Australia – Statement on Expanded Telehealth

Published date: 25 June, 2020

The Neurological Alliance Australia has today issued a Joint Position Statement calling on the Australian Government to permanently extend the amendments made to MBS telehealth items introduced in response to the COVID-19 pandemic. These supports are currently scheduled to cease after 30 September 2020.  The members of the NAA, representing adults and children living with ... Read more Neurological Alliance Australia – Statement on Expanded Telehealth

UPDATE from ROCHE clinical research program into HD drugs

Published date: 21 April, 2020

ROCHE / GENENTECH have released a statement: Update on tominersen (RG6042)* Huntington’s disease (HD) clinical programme: Recruitment into GENERATION HD1 clinical trial has been completed You can read the statement in full here.

Exercise at home – for HD families

Published date: 15 April, 2020

We would like to share some information with you that you may find useful to help you stay as active as possible during this time. We believe that it is important for you to do some structured exercise every day to help you maintain strength and balance.

Welcome to our new website!

Please bear with us while we iron out the last minute wrinkles! If you have any feedback about our new site, please fill out the form below.