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House of Assembly - Fifty-Fifth Parliament, First Session (55-1)
2023-06-15 Daily Xml
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Motor Neurone Disease

Ms THOMPSON (Davenport) (15:51): It is not the first time, and it will not be the last, that I rise to shed light on an insidious and devastating disease that affects thousands of lives around the world, and that is motor neurone disease. MND knows no boundaries. It affects people of all ages, races and backgrounds and its impact extends far beyond the individuals themselves.

In 2020, MND took my beautiful mum and so I am familiar with the profound impact that this disease has on families and communities as they witness their loved ones confronting the gradual loss of independence and the significant challenges that this disease presents. This progressive neurodegenerative condition relentlessly attacks the nerve cells responsible for controlling our muscles, gradually robbing individuals of their ability to move, to speak, to swallow and eventually to breathe. There is currently no cure.

I remember when my mum was first diagnosed. She joked that her favourite Jansz sparkling wine just would not be quite the same through a feeding tube. That was the spirit of my mum, but while she kept smiling and tried very hard to stay positive, particularly around her grandchildren, it was really tough. She quickly progressed to a walker, then to a wheelchair. She used an iPad to communicate with text to voice, and there was a forever growing list of equipment that she needed as the disease progressed. Amidst the challenges posed by MND and, until we find a cure, there is care, and that is what brings me to share with you the remarkable work of MND SA.

MND SA is a not-for-profit community organisation that operates in South Australia and provides incredible support and resources to individuals living with MND, and their families. They offer assistance in areas such as equipment provision, financial aid and access to specialised care. The over 65s amount to approximately 65 per cent of MND SA's clients. However, if you are diagnosed with this disease when you are over 65 years old, you will currently not qualify for NDIS support and must instead apply through overwhelmed federal systems, such as My Aged Care. As a result, 80 per cent of South Australians living with MND who are over 65 pass away before receiving an appropriate level of support.

This is where organisations like MND SA step in. I am proud to say it is also where the Malinauskas Labor government has stepped in, committing to providing ongoing funding to MND SA that will assist South Australians living with motor neurone disease and their families. Next week is MND Awareness Week. This dedicated week aims to educate the public about MND and its impact on individuals and their families. It serves as a platform to share stories of resilience and advocate for increased understanding and empathy.

This winter, I will be joining the MND SA team to embark on a challenging six-day trek along the iconic Larapinta Trail in Australia's Northern Territory, all while raising funds to support MND SA's vital work. If you are in a position to donate, please do. Your donations, big or small, will provide vital resources to improve the lives of those affected by this devastating disease. Your support will also allow MND SA to continue offering essential services and support to individuals and families facing the daily challenges of MND.

Finally, next sitting week the Minister for Health and Wellbeing, together with the member for Frome and myself, will be hosting a Parliamentary Friends of MND morning tea. This is a great opportunity for members to recognise MND Awareness Week and speak with members of the South Australian motor neurone community. I hope to see you all there.

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