1800 244 735

Helpline (02) 9874 9777

We are recruiting Board Members

Could you become a Board Member of Huntington’s NSW ACT? Or even the Chairperson?

With our sister organisations in Canada, the UK and some parts of North America, Huntington’s NSW started as a small group of people in the mid-1970s who were determined to bring Huntington’s disease (HD) “Out of the Darkness”, to bring together isolated families and advocate for their needs. We added the ACT to our organisation in 2017.

In 2020 we are facing a different set of challenges, not to mention a worldwide pandemic. There are now many kinds of services and we’ve come a long way. But as anyone from a HD family knows, there is still so much more that could be done to support people in their everyday lives and to raise awareness of this still misunderstood disease.

Our Association is currently recruiting three Board Members and also a new Chairperson as the incumbent is retiring after many years of dedicated service. We are looking for people who are passionate about helping our organisation better serve the HD community. To do this, we need to remain financially viable in a very difficult time for not-for-profit organisations like ourselves.

Experience in fund-raising, financial management or previous Board experience is desirable, but we are mostly looking for hard-working people who will use their experience to help the Association achieve its goals. You can find more specific details of the roles in the Position Descriptions of both Chairperson and Board Member. (Click on the relevant words in the previous sentence to download these.)

In brief:

The Board meets 9-10 times per year, mostly monthly, currently on the 2nd Tuesday evening of the month. Our CEO circulates items for the meeting, and it is expected that you will have read the documents prior to the meeting, in order to contribute. In our Board meetings we aim to create a congenial atmosphere while getting through the many tasks as efficiently as we can.

This role is unpaid, but current and former Board members will agree that their experience has given them great satisfaction. Please consider coming to join us.

Contact:              Lewis Kaplan, CEO, to discuss the organisation and the roles

Mobile:                0407 108 667

Deadline:             23 September with CV and brief covering letter

Send to:               [email protected]

 

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