1800 244 735

Helpline (02) 9874 9777

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.

 

Latest News and Stories

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
HD news image

HD News Winter 2022

Published date: 1 August, 2022

This is your downloadable copy of the HD News Winter 2022 edition. In this edition you'll be able to read up on the Walk 4 Hope and how to register, HDNA and the map-HD registry and more.
Summer Foundation logo

Summer Foundation report on effective housing and support models

Published date: 19 July, 2022

People with Huntington’s disease require high levels of specialised care in order for them to manage daily living tasks. Specialised housing for people with Huntington’s disease in Australia is limited. This is in part due to a lack of funding and in part due to a lack of appropriate facilities. For many people, this means that their only option is to live in residential aged care (RAC). Living in RAC is generally not appropriate given that the environment often has a lack of age-appropriate activities, and social interaction.
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 logo

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.