Susan Templeman (Macquarie, Australian Labor Party) Share this | Link to this | Hansard source

At the weekend, I had the pleasure of joining around 100 women and a few men at Windsor bowling club to raise funds for research into Huntington's Disease at a High Tea for HD. Amidst champagne, scones and slices, there were tears as well as laughter to raise awareness about the disease and do something practical. I am wearing the ribbon and wristband that were there on the day with the HD colours.

There were many people involved in such a successful event, with Kez Fitzpatrick, Kiarnie Thomas and Leanne Epps three of the driving forces. What united them was the experience of their sister, mum and friend Karen Thomas who explained that she was diagnosed with Huntington's at around the age of 30.

Huntington's is caused by a defective gene, which results in the gradual destruction of neurons. The brain cells that affect the body central nervous system start to die and symptoms like twitching, clumsiness, short-term memory loss, depression and less ability to organise will develop. Later the symptoms will be debilitating, with walking, speech, swallowing and other basic tasks very difficult to do. The defective gene can be passed from one generation to the next. If a parent has the gene, the child has a fifty-fifty chance of inheriting it.

Clearly, we need to learn more about this disease. There is now a test for the gene, but, even so, there is no treatment that can stop, slow or reverse the course of HD. For the sake of those who live with Huntington's, we need to be serious about doing more.