Huntington's Australia provides a range of services for people impacted by Huntington’s Disease (HD). HD is an inherited degenerative neurological condition affecting the brain and central nervous system that results in the progressive and insidious loss of cognitive and physical capacities. There is currently no treatment or cure for this debilitating disease.

Our services include:

• Support groups for individuals, families, and carers
• Advocacy and referral services
• Bereavement support
• Non-clinical counselling

In addition, Huntington's Australia provides awareness and community education about HD, as well as facilitating the provision of suitable services, professional help, and advice for specific groups in the wider community, such as:

• Health professionals
• Aged care and nursing facilities/homes, and hospitals
• The housing and accommodation sector
• Government and non-government agencies supporting people impacted by HD

Key Objectives

To fulfil our vision and mission, Huntington’s Australia aims to:

• Provide the right services and great support to the Huntington’s community – by delivering on the needs of our clients, serving them equitably across Australia, and assisting/connecting with more people.
• Work together to create better outcomes – by leading partnerships and collaborations with other organisations and individuals to create better outcomes for the HD community.
• Increase education and awareness about HD – by being the leading source of reputable, easily accessible, and understandable information on HD, and by making HD and Huntington’s Australia more widely known and understood.

The Co-Group Grant

The Co-Group grant assists our HD Specialists to deliver counselling services, family support, bereavement support, and one-on-one support to people impacted by HD and their families. Huntington’s Australia is the only provider of these supports and services within the community sector.

Currently, over 2,500 Australians are living with HD, with many more at risk. The challenges they face include difficulty accessing specialist care, a lack of mental health support, and significant barriers to essential services. Research shows that people with HD are 2 to 7 times more likely to die by suicide, and that 24% of Australians living with disabilities in rural areas lack sufficient care.

Current Services and Goals

• At present, we have one HD Specialist in NSW and two in Queensland.
• Our aim for the 2024–2025 financial year is to expand capacity in both states to deliver counselling, family support, bereavement support, and one-on-one assistance to people impacted by HD and their families.

As our HD Specialists become familiar with individuals and families impacted by HD, they help build stronger connections. By facilitating these links, carers feel less isolated, more able to share experiences with others in similar situations, and better equipped to continue their caring role. This reduces the risk of separation and crises in care for people living with HD.

Supporting families in this way also shows children of those impacted that, despite the debilitating nature of HD, it is possible to be supported well within families that are themselves supported—lessening the burden on adolescent mental health services.

Prepared by:
Alison Weir Head of Business Development & Fundraising