About Huntington's NSW ACT

Huntington's NSW & ACT Incorporated was established in 1975 to develop support and educational programs for people affected by Huntington's disease in New South Wales and the Australian Capital Territory; to assist their families to understand and cope; and to give these families a strong single voice.

We are licensed in both New South Wales (Authority No: CFN13153 expires 10 February 2021) and the Australian Capital Territory (licence no longer needed due to ACNC regulations) to fundraise for our charitable purposes.

Our Australian Business Number (ABN) is 54 571 730 306, and we are endorsed by the Australian Taxation Office as a Public Benevolent Institution and a Deductible Gift Recipient. Gifts of $2.00 and over to the Association are tax deductible in Australia.

We are an incorporated, non-profit organisation governed by a Board elected annually by our membership. The Association's President is Brian Rumbold and CEO is Lewis Kaplan.



We support people affected by Huntington’s disease to live their best possible life, while striving to eliminate the factors that make our organisation necessary.



Provide leadership in Huntington’s disease information, education, awareness, support and advocacy

We might not do all of this ourselves: we will also facilitate, promote and support all these wherever we find them.


Core organisational values & behaviours

We operate with:

·         Ethics and with integrity

We will always act honestly, openly and directly with our constituents and the community to promote the best interests of the HD community.

·         Commitment to social justice

We want to see all people impacted by HD treated with equity by governments, other institutions and their communities.

·         Compassion

We will recognise the personal hardship and sacrifice of many in the HD community, which impels us to advocate for their interests.

 ·         Respect

We will actively listen to our HD community stories, to inform shared decision making and action to address people’s concerns and goals.

·         Close connection to our community

Our Association is owned by and governed on behalf of our members. We will seek to understand what our members and others in the HD community tell us and respond to their expressed aspirations and concerns to the best of our ability.


Our Strategic Plan

The Board approved a new strategic plan for 2019 - 2022 on 12 November 2019. It can be viewed HERE .


Our Constitution

We are governed by a Constitution. You can read it here Constitution


Our Board

The role of the Board is to set and monitor the strategic plan and budget for the Association. At the AGM on 23rd November 2019, the following members were elected to the Board.

Office Bearers: Board Members
  • Chairperson: Brian Rumbold
  • Secretary: Craig Dalli
  • Treasurer: Stephen Guthrie 
  • Katy Clymo
  • Alison Hill
  • Therese Alting
  • Stephen Garrard


Our Website

The website was constructed with, and is largely maintained by, voluntary effort. Your comments on its usefulness, or suggestions for improvement, are appreciated and can be forwarded by e-mail to info@huntingtonsnsw.org.au

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