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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

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We are recruiting – NDIS Support Coordinator

Published date: 3 April, 2023

Huntington’s NSW ACT provides services and advocacy to improve the lives of Australians impacted by Huntington’s disease and other disabilities under the National Disability Insurance Scheme (NDIS). Under the banner and leadership of Huntington’s NSW ACT, this role works with the Huntington’s Queensland team, to provide support to people with Huntington’s disease (HD) in Queensland, to activate and manage their NDIS plans and engage with a range of mainstream and disability providers to optimise outcomes and achieve their NDIS plan goals.

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.
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HD News Autumn 2023

Published date: 23 March, 2023

Download your copy of HD News Autumn edition by clicking on the link. Some of the highlights in this edition are: Introduction to our counselling service Youth education scholarships Appointment of a CEO for Huntington’s Australia We hope that you enjoy this edition of HD News. If you have any feedback or would like to get in ... Read more

Ailsa’s Legacy – HD Education Scholarship

Published date: 17 March, 2023

We are excited to announce that applications for the 2023 Ailsa’s Legacy Youth Scholarships are now open and invite all children and young people in our HD community needing assistance to start, continue, or return to education in 2023 to apply. We have a number of individual grants available this year of up to $2000 each for children and young people living with an HD affected parent or carer. These grants can be spent on anything that makes accessing education easier and more likely such as course or school fees, uniforms and shoes, computers, IT and software, school camps, school sports, extra tuition, extracurricular activities, transport, accommodation, and more.
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NAA pre-budget submission for the 2023-24 Federal Budget

Published date: 6 March, 2023

The Neurological Alliance Australia * (NAA) is pleased to provide a pre-Budget submission to the Australian Government for the 2023-2024 Budget. This submission focusses on four key areas that will impact people affected by the conditions represented by the members of the NAA.

HD Heroes book release

Published date: 6 March, 2023

Huntington’s Disease Heroes includes stories from a scientist who switched from cancer research to studying Huntington’s after finding out her mother had tested positive for the disease, a young man whose biggest fear was testing gene negative and not inheriting the disease, and a woman who grew up in survival mode, unable to express her grief. We learn about the ways their lives are better off because of the hardships they have faced. By sharing these intimate parts of their lives, they are taking away the fear and stigma of living with Huntington’s in their families. They are giving a voice to this unheard rare disease community and empowering others to speak up.