House debates

Tuesday, 23 May 2023

Constituency Statements

Huntington's Disease

4:01 pm

Photo of Andrew GeeAndrew Gee (Calare, Independent) Share this | Hansard source

Earlier this month I had the honour of attending the Mother's Day High Tea 4 HD, for Huntington's disease support and awareness, organised by HD Awareness Orange and Central West. This event brought together people from Blayney, Dubbo, Wellington, Molong, Forbes, Bathurst, Parkes, Orange and Cowra to discuss the impact of Huntington's and raise funds for and awareness of this devastating disease. Not much is known about Huntington's in the wider community, but, with May being Huntington's Disease Awareness Month, the team at HD Awareness Orange and Central West have set out to change that.

Huntington's disease is an inherited condition that affects the nervous system. Although HD can occur at any age, symptoms often do not appear until middle age, and they worsen over time. Unfortunately, Huntington's can result in a gradual decline of cognitive, physical and emotional function. While there are treatments that can alleviate symptoms, there is no cure. Life expectancy for those with HD is generally around 10 to 30 years following the onset of visible symptoms, and the typical onset of symptoms is between the ages of 30 and 50. For over 75 per cent of people with HD in Australia, the only option is residential aged care, even though most will be entering such care while considerably younger than the threshold age of 65. HD is devastating for patients and for their families and loved ones. The lack of awareness and support adds to the trauma and isolation. Approximately 2,000 Australians are currently living with Huntington's, and, as it is a hereditary condition, approximately 9,000 people are at risk of developing the disease in their lifetime.

Rachael Brooking and her small team at HD Awareness Orange and Central West have done an outstanding job in raising awareness of and vital funding for HD in our region. Members of the team include Natalia Rossiter, Gabriel Rae, Debbie Nicholls, Elizabeth Richard, Kerrie Nicholls, Margaret Schwebel, Rhonda Jefferson, Barbara Chapman and Lauren Watson. Funds raised by HD Awareness Orange and Central West stay in the central west and are used entirely for the benefit of those in our area who are impacted by Huntington's. The current fundraising target is $3,000, for a bus information campaign to raise the profile of regional families impacted by Huntington's. The next fundraising event is this Saturday, with a 'back to the eighties' dance party at Orange City Bowling Club. I'm sure there'll be some Duran Duran and Bucks Fizz happening there, so get on down to the bowlo and support it, everyone in our area.


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