1800 244 735

Helpline (02) 9874 9777

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

donate scene cartoon

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
HD news image

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.
APDA logo

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.