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HD Spotlight on Amy Hale

Here from our Youth Social Worker

Q. Why did you decide to become a social worker?

A. When I was a kid I used to love going to work with my grandma in the holidays. She was a community social worker in Kings Cross. We would drive around the Inner Sydney in the 80’s stopping and speaking to people who were having a hard time – often experiencing homelessness. I used to love watching the way she listened to them and worked with them. She taught me the value in each and every person and showed me how much of a privilege it is to be let into someone’s world with them when they’re struggling.

Q. How did you get involved in the HD world?

A. When the HNSW ACT youth work position was advertised in 2017, the ad just jumped out at me. It was exactly what I was looking for. Not being from an HD family, I became involved in the HD world in a different way. I’ve always been interested in youth work, science, and genetics, and my specific interest in HD started many years ago through trying to understand folk singer, Woody Guthrie’s poems and lyrics. He grew up watching his mum’s HD progress and sometimes wrote about how that felt for him. Listening to him made me want to learn all I could about Huntington’s disease, and I’ve had a fascination with it ever since.

Q. What keeps you enthusiastic about your job?

A. It’s impossible not to stay enthusiastic when I am constantly being inspired by the strength, honesty, and resilience I see in the kids and families I work with. The Huntington’s community really is like no other. Growing up in a family affected by HD can present such extraordinary and unique challenges for a young person. The privilege of walking that path with them while they’re trying to work out and navigate these challenges is really very special.

Q. What is your ideal Sunday?

A. I think my ideal Sunday would just involve a long list of simple pleasures! I live in a rural area in the mountains outside Sydney, so weekends are quiet. I’d definitely start with a coffee outside in the sun watching the magpies – and if I’m really lucky, I’d see some brown doves as well. I’d spend time with my kids and my dogs (who would all be behaving perfectly – for the entire day). We’d listen to records and find creative things to do. Maybe we’d have a swim in the dam in the afternoon and definitely homemade pizza for dinner. As the sun goes down, we might light a little fire in the garden to sit around. That would be a pretty great day for me.

 

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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.
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HD News Autumn 2023

Published date: 23 March, 2023

Download your copy of HD News Autumn edition by clicking on the link. Some of the highlights in this edition are: Introduction to our counselling service Youth education scholarships Appointment of a CEO for Huntington’s Australia We hope that you enjoy this edition of HD News. If you have any feedback or would like to get in ... Read more

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.