1800 244 735

Helpline (02) 9874 9777

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

Tax Appeal 2022

Tax Appeal – help Brendan get specialist support

Published date: 14 June, 2022

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. Your donations will help our team connect and care for individuals and families affected by Huntington’s Disease across NSW and the ACT.
Huntington's Disease Network of Australia

Join the Map-HD Registry today

Published date: 30 May, 2022

Please join with the HDNA as we work toward facilitating the best quality of life for every Australian affected by Huntington’s Disease (HD). Now more than ever, research teams and companies across the globe are testing possible treatments for Huntington’s Disease.
lady doing an announcement

NAA seeks commitments for the 2022 Federal Election

Published date: 10 May, 2022

The Neurological Alliance Australia (NAA) seeks commitments from parties and candidates for the upcoming Federal Election to address the urgent needs of adults and children living with neurological diseases in Australia.  
Virtual meeting

HD NZ Conference Information

Published date: 10 May, 2022

The Huntington’s Disease Associations of New Zealand invite members, non-members, families and healthcare professionals to attend their conference on June 10 and 11. There is an online option if you are interested in finding out more visit their website.

HD News Autumn 2022

Published date: 8 March, 2022

Download your copy of HD News Autumn 2022 here. We hope that you enjoy reading the latest news from Huntington's NSW ACT. If you have any questions or feedback please contact us at the office.

Professor Elizabeth McCusker awarded OAM

Published date: 27 January, 2022

We are delighted to share that Professor Elizabeth McCusker has been awarded OAM by the Governor-General in the Australia Day 2022 Honours List. Prof McCusker was awarded OAM for her service to medicine as a neurologist, particularly in the field of Huntington's disease.