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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. Katy 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 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.

Naomi Fraser

Naomi was elected to the Board in September 2022, having been involved in the Fundraising Committee for 4 years prior.  Naomi has a background in Finance, having worked as a Wealth Adviser for over 17 years. Through her work as a Wealth Manager, Naomi has been involved with several not-for-profit Boards over her career.




Community Advisory Committee

The Board has established a Community Advisory Committee to:

  1. 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. Be a conduit particularly from regional areas into the strategic planning and service delivery operations of the Association
  3. Recommend issues for the Board’s consideration.


Robyn Russell

Robyn is the Chair of the Community Advisory Committee. 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.


Gabrielle Phillips

Gabrielle joined the Community Advisory Committee in January 2021. She is a research scientist building a research program on HD at the University of Wollongong. She specialises in understanding the molecular changes in the brain caused by HD, achieving her PhD on this topic, and publishing multiple peer reviewed publications. Gabrielle is an advocate for people with HD and is passionate about engaging the community with her research.


Nick Packham

Nick joined Vivability Ltd as CEO in July 2016, he has 36 years’ experience working in the disability sector. Prior to joining Vivability Nick worked with the NSW Department of Ageing, Disability and Homecare in a variety of roles, including managing specialist disability services which included therapy, complex case management, psychology and complex behavioural services across the Central West of NSW. He is passionate about skills development within the disability sector as a pathway to ensuring providers meet the demand for the range and quality of services from people with disabilities.

Peter Stephen

Peter joined the Community Advisory Committee in January 2021. Peter has cared for his two brothers, who both had HD, and is very passionate about the HD community. He would like to use his experience to make things better for others in the HD community.