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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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We are recruiting – Youth Services Practitioner

Published date: 20 March, 2023

Huntington’s NSW ACT provides services and advocacy to improve the lives of people impacted by Huntington’s disease (HD). The HD Youth Services Practitioner supports achievement of Huntington’s NSW ACT’s strategic objectives by providing counselling and other tools to improve the mental health of children and young people at risk of Huntington’s disease, and/or living with a parent or carer, or family member affected by or at risk of developing HD.

Ailsa’s Legacy – HD Education Scholarship

Published date: 17 March, 2023

We are excited to announce that applications for the 2023 Ailsa’s Legacy Youth Scholarships are now open and invite all children and young people in our HD community needing assistance to start, continue, or return to education in 2023 to apply. We have a number of individual grants available this year of up to $2000 each for children and young people living with an HD affected parent or carer. These grants can be spent on anything that makes accessing education easier and more likely such as course or school fees, uniforms and shoes, computers, IT and software, school camps, school sports, extra tuition, extracurricular activities, transport, accommodation, and more.
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NAA pre-budget submission for the 2023-24 Federal Budget

Published date: 6 March, 2023

The Neurological Alliance Australia * (NAA) is pleased to provide a pre-Budget submission to the Australian Government for the 2023-2024 Budget. This submission focusses on four key areas that will impact people affected by the conditions represented by the members of the NAA.

HD Heroes book release

Published date: 6 March, 2023

Huntington’s Disease Heroes includes stories from a scientist who switched from cancer research to studying Huntington’s after finding out her mother had tested positive for the disease, a young man whose biggest fear was testing gene negative and not inheriting the disease, and a woman who grew up in survival mode, unable to express her grief. We learn about the ways their lives are better off because of the hardships they have faced. By sharing these intimate parts of their lives, they are taking away the fear and stigma of living with Huntington’s in their families. They are giving a voice to this unheard rare disease community and empowering others to speak up.
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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