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HD News Summer 2019

Dear Members and Supporters

We are taking the liberty of sending you a hard copy of the Summer 2019 edition of HD News, but if you’d also like to read it online, please do so HERE. (Please note this is a large file – 9 MB.)

Best wishes for Christmas and the New Year from the Board, volunteers and staff at Huntington’s NSW ACT.

PLEASE NOTE: Our offices will be closed from 19 December – 6 January.

Latest News and Stories

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HD News Spring 2022

Published date: 22 November, 2022

Download your copy of HD News Spring edition by clicking on the link. Some of the highlights in this edition are: Information on the proposed merger Growth of our NDIS team Walk 4 Hope wrap up Youth Connection program update and some exciting news We hope that you enjoy this edition of HD News. If you ... Read more

Awarded for the Association Turnaround of the Year

Published date: 10 November, 2022

The Association Awardsᵀᴹ recognise excellence and accomplishment by associations and outstanding individuals. In addition to recognition, the process of nominating for an Award will be a worthwhile experience as it will encourage associations to consider the factors that make a successful association, turnaround or campaign.
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APDA – The Good, The Bad & The Hack

Published date: 10 October, 2022

Huntington's NSW ACT is a member of The Accessible Product Design Alliance (APDA), which is a group of not-for-profit consumer health organisations working together to represent people with chronic conditions who are significantly impacted by inaccessible products and packaging. This campaign aims for those living with a disability to share their experience of different products to raise awareness of accessible and inaccessible experiences, support others to make their lives easier and help us educate product and packaging manufactures about what they need to improve.

Wave Life Sciences Announces Positive Update from Phase 1b/2a SELECT-HD Trial

Published date: 29 September, 2022

SELECT-HD (NCT05032196) is an adaptive trial designed to rapidly optimize dose level and frequency based on early indicators of target engagement. The trial update announced today is being driven by the observation of reductions of mutant huntingtin (mHTT) protein in cerebrospinal fluid (CSF) after study participants received either a single 30 or 60 mg dose ... Read more

Proposed Huntington’s State Associations’ merger going to a membership vote

Published date: 15 September, 2022

On behalf of the Consortium of Australian Huntington’s Associations (CAHA) we are updating you on the proposed merger of the five State and Territory Associations into one new national body. Each State Board has determined that the merger is the best path forward for enhanced and sustainable supports and services to be provided for people affected by Huntington’s disease.

Update regarding possible merger of State Huntington’s Associations

Published date: 15 August, 2022

On behalf of the Consortium of Australian Huntington’s Associations (CAHA) we are updating you on the proposed merger of the five State and Territory Associations into one new national body. Firstly, we would like to thank everyone for their feedback. We are heartened that the overwhelming majority of you are very supportive. There are some concerns, however, most commonly about preserving local services and community engagement.