News articles

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.
lady doing an announcement

Update from Huntington Disease Research Team at Westmead re COVID-19

Published date: 7 April, 2020

advice from the HD Research Team at Westmead.
lady doing an announcement

Coronavirus Pandemic Huntington’s NSW ACT response

Published date: 7 April, 2020

We will need a plan “B” WORDS LEWIS  KAPLAN While this article will probably be way out of date by the time it reaches you, I wanted to give you a sense of what your association is looking at over the next few weeks and months. First and foremost, we must take extra care, given ... Read more Coronavirus Pandemic Huntington’s NSW ACT response
lady doing an announcement

COVID-19 Coronavirus pandemic – Huntington’s NSW ACT response

Published date: 17 March, 2020

17 March 2020 Dear Huntington’s NSW ACT client / member / supporter / contractor As you will be aware, the Government’s advice on dealing with the COVID-19 pandemic is changing rapidly. We have decided, in the interests of minimising the risk to our very vulnerable client group, to cancel all face to face activities except ... Read more COVID-19 Coronavirus pandemic – Huntington’s NSW ACT response

Youth Connection Program grant from…

Published date: 13 February, 2020

Ansvar Insurance Community Education Program to run our Youth Connection Program for a further 12 months

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