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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

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.