1800 244 735

HD Spotlight on Robyn Russell

Huntington’s NSW ACT Board Member and Chair of the Community Advisory Committee

Q. How did you get involved in the HD world?
A. Like so many other people I first heard and learnt about Huntington’s Disease when a family member was diagnosed. That was over 30 years ago now and back then there wasn’t a great deal of user friendly information or support.

Q. Why did you become a Huntington’s NSW ACT board member?
A. I decided to put my hand up to join the Huntington’s NSW ACT board as a way of being able to give something back to the Association. Many times over the years our family has turned to the Association for advice and help. This support has been invaluable and given us peace of mind. It’s my goal now to pay it forward.

Q. What excites you about being appointed as Chair to our newly established Community Advisory Committee?
A. As Chair of the Community Advisory Committee, I am extremely excited and looking forward to the opportunity to meet and work with people with a shared passion. The Community Advisory Committee has so much positive energy – our aim is to harness this positive energy to increase awareness of HD, feedback to the Association and to generally do our bit to improve the lives of those affected by HD.

Q. What makes you laugh?
A. Other people laughing make me laugh! It’s infectious! As children my younger sister and I would lie awake at night and play the “laughing game” by taking it in turns to laugh – before long we would both be laughing our heads off and at risk of getting into trouble. When I hear about laughter therapy workshops now I remember those nights and just how good those out of control big belly laughs made us feel.

Q. What is your ideal Sunday?
A. My ideal Sunday starts by waking up without an alarm. That’s closely followed by a lazy coffee before heading to the beach either to swim some laps in the ocean pool or to walk our beloved pooch. My next favourite thing to do on a Sunday is to cook for family and friends. I love it when we set a table up in the garden under our persimmon tree to eat and spend some quality time together.

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
HD news image

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.
donate scene cartoon

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.