1800 244 735

Helpline (02) 9874 9777

Our Governance

Core organisational values & behaviours

We operate with:

Ethics and 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.

Board

The role of the Board is to set and monitor the strategic plan and budget for the Association. At the AGM on 21st November 2020, 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.

 


Craig Dalli – Secretary

Craig joined the Board in 2019 and is currently serving as Secretary. He brings to the Board more than 35 years experience in Local Government with particular expertise in corporate governance, risk, commercial negotiations, economic and community development.

Craig’s goal is for the Association to continue to develop and expand its support and advocacy services for HD patients and their families and carers, facilitating greater awareness of the disease and creating a sustainable commercial model for the Association so it can deliver a wide range of programs and services. He is advocating for the development of stronger partnerships with government agencies, communities and the corporate sector to support the great work of the Association both financially and through providing resources.

 


Stephen Guthrie – Treasurer

Stephen was elected to the Board in November 2016. He is a director with accounting and financial advisory firm Prosperity Advisers and has more than 30 years’ experience providing strategic business advice, tax and accounting services.

 


Directors

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 joined 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.

 


Kim Hart

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.

 

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Andrew Sully

Andrew was elected to the Board in November 2020.  More details to follow.

 

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Board Observer

Andrea Brown

Andrea became a Board Observer in February 2020. She has over 20 years’ experience in financial services and insurance industries, in senior roles including Head of Culture, Governance and Accountability and Head of Business Strategy and Operations at Westpac Bank. She has a degree in Business Management and is a graduate and member of the Australian Institute of Company Directors. As a Board Observer at Huntington’s NSW ACT Andrea has the opportunity to contribute her skills, connections and expertise to support the important work the organisation does by leveraging her capabilities which include strategy, stakeholder management and program delivery.

 

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