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Helpline (02) 9874 9777

Our Governance

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 inclusion

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


We will recognise the personal hardship and sacrifice of many in the HD community.


We will actively listen to our HD community, 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.


The role of the Board is to set and monitor the Strategic Plan and budget for the Association. At the AGM on 27th November 2021, the following members were elected to the Board.

Office bearers


Katy Clymo – Chair

Katy joined the Board in November 2015. Over the last twenty years Katy has worked in sales, marketing and client service for asset management firms globally. Katy has a personal interest in Huntington’s disease, with a particular focus on youth connection, family support and research. She has been involved in a range of fundraising activities on behalf of Huntington’s NSW ACT and HD Research at the Florey Institute of Neuroscience and Mental Health.



Kim Hart Secretary

Kim was elected to the Board in November 2020. He is an IT Project Manager and brings to the board more than 20 years of experience in the public (Defence) and private sector and has experience as a non-profit director of soldiers clubs in NSW. Kim has a strong background in strategic planning, project management and regulatory compliance.



Mark Raven Treasurer

Mark was elected to join the Board in November 2021. Mark’s professional career includes over twenty years as senior executive and director in the vocational and international educator sector. In that time, Mark has also served on a number of not-for-profit Boards, with a remit to support the needs of disadvantaged young people. Mark’s family has a long history of living with Huntington’s disease, which has motivated him to improve the quality of life for those affected and their loved ones.



Dr Therese Alting

Therese was elected to the Board in November 2015.  She is a Clinical Neuropsychologist working in research at Westmead Hospital Huntington’s Disease Service in NSW, primarily coordinating the Enroll-HD Study.  She wrote her PhD thesis on the history of Huntington’s disease in Australia. Click here to read it.

Dr Alting is a former Board Secretary of Huntington’s NSW ACT.


Robyn Russell

Robyn was elected to the Board in November 2020. She has extensive NDIS and disability experience including advocacy and lobbying,  and she has previously been on the board of a small charity. Robyn is committed to improving the lives of people affected by HD.



Stephen Garrard

Stephen was elected to the Board in June 2019. He has an extensive background in economic development, the not-for-profit and community sectors. Stephen is the deputy chair for the NSW division of Economic Development Australia and has over 10 years’ experience spearheading community and business related initiatives for local government. Stephen collaborates with a wide network of business associations, state and federal government agencies to facilitate the success of many business and community activities.


Andrew Sully

Andrew was elected to the Board in November 2020. He has joined the board to make a difference and raise the awareness of the disease that impacts many families in Australia. Andrew has 15+ years’ experience in building recruitment/ talent acquisition businesses from developing the end to end strategy including the sales & marketing of these businesses. Andrew hopes to transfer these skills to increase the awareness and funding efforts to support the HD community.




The Board has established a Community Advisory Committee to:

  1. To meet 4 – 6 times per year to discuss issues of relevance and concern to people affected by HD (living with HD, carers, pre-manifest and younger people and other stakeholders in the HD community).
  2. To be a conduit particularly from regional areas into the strategic planning and service delivery operations of the Association
  3. To recommend issues for the Board’s consideration.
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