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HD spotlight on Dr Therese Alting

Dr Therese Alting, PhD

Huntington’s NSW ACT board Secretary

Q.) How did you get involved in the HD world?

A.) I had my first real experience of HD in 1993 when as a newly qualified  neuropsychologist I worked in the HD predictive testing program at Lidcombe Hospital. not long after that I saw a documentary on TV about Nancy Wexler and the team finding the gene through the help of the Venezuelan families. It was very moving.

Q.) Why did you become a HNSW & ACT board member?

A.) The Association had gone through a difficult time, and I wanted to go beyond my part-time role in HD research to support families in NSW another way. My kids had grown up enough for me to volunteer some spare time, and it’s been a great experience (though note-taking at meetings is not my strong point).

Q.) What excites you about HD research?

A.) Like everybody, the idea that we might be close to slowing the progression of this terrible disease. scientists  around  the world are approaching treatment in so many different ways. I love that  some HD researchers are at risk or from HD  families, a symbol of the close connections between the two. At the end of our Enroll visits, as the blood sample is shipped off overseas, i think of it as another tiny piece in solving the HD jigsaw.

Q.) What has been your favourite HD moment?

A.) Sorry I’m going to be like a politician here and not answer the question, but a related one. The best thing will be when we have successful treatments for HD that people all over the world can access. But already there have been improvements. People used to engage in victim-blaming, forcing families to keep terrible secrets. So my favourite moment is really an era, from the 1970s, when people started to emerge from decades of social isolation and stigma to bring HD out into the open, advocate for their needs and support each other.

Q.)What makes you laugh?

A.) Our stupid dogs. British comedies, like Black Books. Often my own idiocy (might as well be the first one). US politics (sorry did you say laugh or  cry). Socialising with friends and family.

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.