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Christmas Appeal – The Year That Was….

As we approach the end of the year and the Christmas holidays we are all a little unsure whether we will be getting together with family members and loved ones to share the festive season in the way we always do. One thing we can be sure of is that we will look back on 2020 as the year that was!

Reflecting on this year, it all feels a bit unreal: bush fires, COVID-19 and the entire country in compulsory lock down! We then had to find ways to keep the virtual doors open to ensure our families were not left without support.

The year that was… changes

COVID-19 impacted the majority of NDIS Support Coordination clients. We found that we had to spend significantly more time than usual to get the best results for them. Even arranging meetings required more creativity and flexibility.

We have had some great wins along the way – finding safe supported housing for nine people with Huntington’s disease. This bodes well for the larger numbers of people with HD who will want to move from aged care into disability residential care in the coming year.

A big change in the way we support children and young people came about during the lock-down period when we extended our services to include parent counselling via video and telephone. This was successful and resulted in families staying connected with our Youth Connection Program during this time.

Offering professional support to parents and carers as a way of meeting the needs of children and young clients was based on our understanding that well-supported parents and carers have greater capacity to meet the emotional needs of their children.

Yes, all in all it’s been a mixed-up year but it was heartening to see that people are resilient and continued to sign up for our seventh Walk 4 Hope, doing it their way and in their time.  Wearing their green t-shirts and getting noticed to raise both awareness and funds for Huntington’s.

Help us by sending a special gift of $50 or even $75 this Christmas. It’s not the size of the gift that’s important but the thought behind it and we are grateful for your generosity.

On behalf of all of us all here at Huntington’s NSW ACT Thank You for your dedication and for everything you do to support families affected by Huntington’s disease.  We wish you and your loved ones a wonderful Christmas, and it goes without saying, a happy and healthy 2021.

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Latest News and Stories

CEO announcement for Huntington’s Australia

Published date: 16 January, 2023

Following the recent announcement about State Association memberships agreeing to proceed with a national merger, Huntington’s Australia (HA) has appointed a new CEO to lead the new association. Lenni Duffield, from Huntington’s WA, has been unanimously endorsed by the HA Board as the inaugural CEO of Huntington’s Australia. Lenni has held senior roles and provided ... Read more

Members have agreed to merge into a new, single entity, Huntington’s Australia

Published date: 6 December, 2022

We’ve got some great news to share! Members of five State and Territory organisations (Queensland, NSW ACT, Tasmania, SA&NT and WA) have agreed to merge into a new, single entity, Huntington’s Australia (HA). We are all very excited about the opportunities this will provide to the Huntington’s community. The merger will bring together five associations ... Read more
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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.

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

Published date: 30 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.