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HD Spotlight on John Conaghan

SOCIAL WORKER Hunter HD Service, John Hunter Hospital, Newcastle NSW

Q. Why did you decide to become a social worker?
A.  I think I had been pondering for a while about what to do with my life. I liked the humanities at uni and it probably grew from there. I also think that various life experiences propelled me to have a genuine interest in the relational and emotional self. Social work seemed to be the best fit for me.

Q. How did Huntington’s disease become your specialty?
A. I first was introduced to HD when I was studying social work in Melbourne in the early 1980s. I ended up working as a care assistant at a place called Mary’s Mount which was a care facility for people with HD. It was this experience which made me interested in HD and hence applying for the job I currently have back in 1991. I remember being challenged by how I could be helpful to people with an incurable disease and this stuck with me for some time before I went into the work.

Q. What’s the best part about working with HD families?
A. Without a doubt the longer term nature of the relationship with families, bearing witness to people’s courage, resilience, compassion, sadness and love for each other.

Q. What keeps you enthusiastic about your job?
A. The idea of working in the service of others, the development and maintenance of the relationship with people who have HD and their families and the hope of a better treatment.

Q. What is your ideal Sunday?
A. Knocking over a few jobs around the house, a pot of ginger infused chai tea with my partner Suzie over lunch and playing some cricket with my son Tomas at the nets in the afternoon.

Latest News and Stories

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We are recruiting – NDIS Support Coordinator

Published date: 3 April, 2023

Huntington’s NSW ACT provides services and advocacy to improve the lives of Australians impacted by Huntington’s disease and other disabilities under the National Disability Insurance Scheme (NDIS). Under the banner and leadership of Huntington’s NSW ACT, this role works with the Huntington’s Queensland team, to provide support to people with Huntington’s disease (HD) in Queensland, to activate and manage their NDIS plans and engage with a range of mainstream and disability providers to optimise outcomes and achieve their NDIS plan goals.

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.