1800 244 735

Helpline (02) 9874 9777

Could you become the next Treasurer of Huntington’s NSW ACT?

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 and are part of a consortium of state associations.

Huntington’s disease (HD) is a rare, genetic neurodegenerative disease. This means that it is a disease of the brain that is passed down from parent to child, with each child having a 50% chance of inheriting the HD gene. If this gene is inherited, it is certain that this child will, at some point develop Huntington’s disease. From the onset of symptoms – usually around 35 – 50 years of age, people with HD have a life expectancy of 10 to 25 years as symptoms progressively worsen.

Although Huntington’s is recognised disease on its own, it is often described as like having Motor Neurone disease, Parkinson’s disease and Alzheimer’s disease all at the same time with some additional behavioural changes as well. There is currently no cure for HD and very little by way of symptomatic treatment.

In 2021 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 a new Treasurer as the incumbent is retiring after many years of dedicated service. We are looking for a person who is 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 person who will use their experience to help the Association achieve its goals. You can find more specific details of the roles in the Position Description here – HNSWACT Board Treasurer Position Description_April21

In brief:

The Board meets 9-10 times per year, mostly monthly, currently on the 2nd Tuesday evening of the month for 2 – 2.5 hours either face to face at our West Ryde HQ or virtually. 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.

Time commitment might average up to six hours per month including board meetings.

We seek a qualified finance professional (e.g. accountant) who has some governance experience, ideally in the charitable sector.

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

 

Deadline:

Please send your CV and brief covering letter by 5 November 2021 to [email protected]

Contact Lewis Kaplan, CEO, to discuss the organisation and the role on 0407 108 667.

 

 

Latest News and Stories

donate scene cartoon

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

Members have agreed to merge into a new, single entity, Huntington’s Australia

Published date: 6 December, 2022

We’ve got some great news to share! Members of five State and Territory organisations (Queensland, NSW ACT, Tasmania, SA&NT and WA) have agreed to merge into a new, single entity, Huntington’s Australia (HA). We are all very excited about the opportunities this will provide to the Huntington’s community. The merger will bring together five associations ... Read more
HD news image

HD News Spring 2022

Published date: 22 November, 2022

Download your copy of HD News Spring edition by clicking on the link. Some of the highlights in this edition are: Information on the proposed merger Growth of our NDIS team Walk 4 Hope wrap up Youth Connection program update and some exciting news We hope that you enjoy this edition of HD News. If you ... Read more

Awarded for the Association Turnaround of the Year

Published date: 10 November, 2022

The Association Awardsᵀᴹ recognise excellence and accomplishment by associations and outstanding individuals. In addition to recognition, the process of nominating for an Award will be a worthwhile experience as it will encourage associations to consider the factors that make a successful association, turnaround or campaign.
APDA logo

APDA – The Good, The Bad & The Hack

Published date: 10 October, 2022

Huntington's NSW ACT is a member of The Accessible Product Design Alliance (APDA), which is a group of not-for-profit consumer health organisations working together to represent people with chronic conditions who are significantly impacted by inaccessible products and packaging. This campaign aims for those living with a disability to share their experience of different products to raise awareness of accessible and inaccessible experiences, support others to make their lives easier and help us educate product and packaging manufactures about what they need to improve.