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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

We are so close to merging into Huntington’s Australia

Published date: 14 September, 2023

We are now only a matter of weeks away from commencing business as Huntington’s Australia (HA). It has been an enormous effort from so many people to get us to this stage, where we are standing on the precipice of a new, interconnected, national approach to providing supports and services to the Australian HD community.

We are recruiting – Fundraising & Events Coordinator

Published date: 4 August, 2023

Huntington’s Australia is a national leader in the delivery of services to support and empower people impacted by Huntington’s Disease (HD) to live their best life. We provide NDIS services, community education, individual and group capability building activities and advocacy at all levels. As part of the Business Development, Fundraising and Partnerships Team this role ... Read more
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HD News Winter 2023

Published date: 31 July, 2023

Download your copy of HD News Winter edition by clicking on the link. Some of the highlights in this edition are Introduction to our HD Youth Specialist and program update, HD Awareness Month and the High Tea 4 HD, an update on the progress of Huntington's Australia, dates and registration details for Walk 4 Hope.
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We are recruiting – HD Specialist

Published date: 5 July, 2023

Huntington’s NSW ACT is the peak body representing the Huntington’s community in NSW and the ACT. We support people affected by Huntington’s Disease (HD) to live their best possible life, while striving to eliminate the factors that make our organisation necessary. We provide leadership in Huntington’s disease information, education, awareness, support and advocacy. 

Merger date delayed for Huntington’s Australia

Published date: 8 June, 2023

As a valued member of the HD community, we’d like to keep you up to date with Huntington’s Australia (HA) developments. A summary of the article: Our NDIS registration is taking longer than expected and as such the merger date of 1 July has been postponed. The different associations are working together to share resources ... Read more

An update on all things Huntington’s Australia

Published date: 29 March, 2023

As a valued member of the HD community, we’d like to keep you up to date with Huntington’s Australia (HA) developments. The merger implementation is in full swing and just about everyone is getting involved in some way, shape or form. All staff are in the process of having discussions with our CEO, Lenni, and our HR Specialist, Lyn, about transitioning into the new HA organisation. We are still expecting that most of the staff employed by State Associations will transfer to HA. In addition to our CEO, we now also have another two of the senior management team selected, and both are starting this month - Leah Atkinson as the Head of Finance and Corporate Services and Basil Mabuza as the Head of Community Programs and Services.