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
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.
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.