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Helpline (02) 9874 9777

Tax Appeal – help Brendan get specialist support

The end of the financial year is just around the corner, and we need your help. You can support the valuable work of Huntington’s NSW ACT by kindly making a tax-deductible donation before June 30. Make a donation today.

Your donations will help our team connect and care for individuals and families affected by Huntington’s Disease across NSW and the ACT. We are planning to launch a new HD specialised service for our community. A counselling service to deal with challenges in a positive way by helping clients to work through issues, explore options, create strategies and enhance self-awareness. People like Brendan* who live in a regional town and find it hard to access the healthcare specialists and support he needs as his HD progresses could access this service.

“I was diagnosed with HD in January this year and since then have really relied on Huntington’s NSW ACT to support my family and me and point us in the right direction. As a young fella I grew up seeing Dad go through HD. That’s one of the reasons my wife and I made the decision to get all the help we can for our family. It was such a relief when I first called to find out that there are things available for us out here. I do love living where we live but having HD makes you realise how far away you are from everything.

So far, we’ve worked out how to link in from here with the HD specialists in Sydney, I’ve attended my first rural support group, and they’ve sent me a heap of information on the NDIS and the other services they provide like their youth program for my kids. They’ve also sent me a doctor’s guidebook about HD that I took with me to my local GP so she could be really informed and some books about kids and HD and the types of questions they might ask.

We’re pretty keen for the kids to link in with the youth program. And the HD counselling service is something I know will be really helpful. It’s a bit hard, especially for someone like me who hasn’t done much of that before, talking about how I’m coping and feeling but I know how important it is to do.”

As someone who believes in our mission and shows support, we are asking you to help us by sending a special gift of $50 or even $75 before June 30. Your generosity will reassure someone like Brendan that they are not alone, and will receive Huntington’s specific support whenever they need, at no cost to them or their family. We are committed to making things better for families with HD, with better treatments, care, and specialised support. We will continue to work to do whatever is necessary so that every person who is affected by HD can live their best life.


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.