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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

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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.
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.

Wave Life Sciences Announces Positive Update from Phase 1b/2a SELECT-HD Trial

Published date: 29 September, 2022

SELECT-HD (NCT05032196) is an adaptive trial designed to rapidly optimize dose level and frequency based on early indicators of target engagement. The trial update announced today is being driven by the observation of reductions of mutant huntingtin (mHTT) protein in cerebrospinal fluid (CSF) after study participants received either a single 30 or 60 mg dose ... Read more

Proposed Huntington’s State Associations’ merger going to a membership vote

Published date: 15 September, 2022

On behalf of the Consortium of Australian Huntington’s Associations (CAHA) we are updating you on the proposed merger of the five State and Territory Associations into one new national body. Each State Board has determined that the merger is the best path forward for enhanced and sustainable supports and services to be provided for people affected by Huntington’s disease.

Update regarding possible merger of State Huntington’s Associations

Published date: 15 August, 2022

On behalf of the Consortium of Australian Huntington’s Associations (CAHA) we are updating you on the proposed merger of the five State and Territory Associations into one new national body. Firstly, we would like to thank everyone for their feedback. We are heartened that the overwhelming majority of you are very supportive. There are some concerns, however, most commonly about preserving local services and community engagement.