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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.

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Latest News and Stories

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We are recruiting – Support Services Administrator

Published date: 2 February, 2023

We have created a new position for an enthusiastic and committed person wanting to be part of an inclusive and supportive team in a growing NDIS specialist business and specialised programs, supporting people living with Huntington’s disease (HD) and their families. In this part-time role you will be responsible for providing administration support to a ... Read more

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.