Motor Neurone Disease

17 March 2010

Mr HAWKE (Mitchell) (9:47 AM) —I rise this morning to bring awareness of motor neurone disease in Australia. Motor neurone disease is a devastating neurological illness that affects around 1,400 people across Australia. Of course, motor neurone disease is the name given to a group of diseases in which the nerve cells controlling the muscles that enable us to move around, speak, swallow and breath fail to work normally. With no nerves to activate them, the muscles gradually weaken and waste. The patterns of weakness and the rate of progression vary from person to person. I rise this morning in particular to note the case of Vanessa Khan in my electorate, in the suburb of Bella Vista. This family was hit by motor neurone disease in July 2009 and it was a mere eight months from the diagnosis to the death of Mrs Khan—a very tragic situation. I want to congratulate the courage of her daughter, Jemila Khan, and her husband, Marcus Khan, who have become passionate advocates for the cause of motor neurone disease in Australia. I want to join them in their advocacy today.

I note that federal funding does exist for various elements of motor neurone disease, including research into what causes it and what can be done about it. It was first discovered in 1869 and there is still no known cause and no known cure for this devastating disease and treatment options are very limited. I had the unfortunate experience of seeing Vanessa deteriorate on a monthly basis and it was quite horrific to note the marked deterioration and loss of control of bodily functions from her diagnosis to her death, which severely affected and impacted her family. The Motor Neurone Disease Australia network comprises six associations and it is there to research and develop a potential cure. Some of the needs they describe that are pressing in Australia today include things like early diagnosis; early access to MND associations for information; support and referral to services; early intervention, which of course in so many cases often reduces the overall service needs; flexible and timely respite for carers; urgent response; and regular review. I note that timeliness is the key here in so many ways in treatment options for people.

Many famous people of course have, unfortunately, lived with or died from motor neurone disease, including Australian athletics coach Percy Cerutty, painter Pro Hart, mathematician, physicist and author Professor Stephen Hawking and even Mao Zedong. Within Australia today each week 10 people are diagnosed with motor neurone disease, and 1,400 people are estimated to have it at any given time.

I want to record my sympathy for the Khan family. Their suffering was our community suffering. Vanessa was a notable figure within the Bella Vista community, working for charity groups and giving of her time freely to so many. At her funeral many neighbours, friends, families and community groups recognised her efforts. I want to encourage the government to do everything that it can to fund motor neurone disease research in Australia.