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DHHS » Mental Health » Huntington's Disease Association Inc.

Huntington's Disease Association Inc.

Providing a voice for people with Huntington’s disease and their families

Huntington’s disease is an incurable, inherited, neurodegenerative disorder of the brain that causes progressive deterioration of the physical, cognitive and emotional self. It leads to severe incapacity and eventual death some 15 to 20 years later. It is caused by a mutated gene that is passed from parent to child. Each child of a parent with Huntington’s disease has a 50% chance of inheriting the expanded gene and therefore the disease itself.

The progression of this disorder is slow and insidious – whereas in the initial stages it may be possible to keep working, sometimes at a lesser level, it soon become apparent that they are making poor decisions, mistakes through lack of coordination and often have problems working as part of a team. This is t a time when most people have children at school and are in the prime of their lives – between 35 and 50 years.

There are approximately 100 people in Tasmania at some stage of Huntington’s disease. This equates to about 1 in every 5000 people in the state. This is twice that of other Australian states and other European countries. For every person with Huntington’s disease it is anticipated that there will be at least 5 others who share the problems. These are spouse/carer, children and grandchildren; the spouse because of the burden of care; and the offspring because of their risk status.

Established in 1978, the Huntington’s Disease Association is a not-for-profit, non- government organisation with a focus on providing information, education, advocacy and other support for people with Huntington’s disease and their families.

Educating the wider community is also a priority and we provide education sessions to groups such as the ANF and Care facilities. Regular conferences and seminars (most recently in 2003 and 2008) with national and international speakers have been hosted by our organisation in Tasmania.

We are members of Huntington’s Australia and the International Huntington’s Association which is hosting the World Congress on Huntington’s Disease in September 2011 in Melbourne.

The Association can provide the following support: