Global Motor Neurone Disease Awareness Day

Ms THOMPSON (Davenport) (11:22): I move:

That this house—

(a) recognises that 21 June is Global Motor Neurone Disease Awareness Day;

(b) notes that this is a day to acknowledge the devastating impact of MND, to bring attention to the plight of those living with the disease, and to remember those who have tragically passed;

(c) acknowledges that South Australia is at the forefront of global research to cure MND, with groundbreaking work taking place at Flinders University;

(d) recognises the vital role of MND South Australia (MNDSA) and MND Australia in advocating for and supporting people living with MND, their families and carers, as well as raising awareness and funding for research;

(e) remembers the Malinauskas Labor government’s commitment to additional funding over four years to MNDSA, ensuring the provision of specialist care, treatment and equipment to improve quality of life for people with MND and help them remain at home rather than in hospital; and

(f) thanks and applauds the dedicated carers, including family members, friends and healthcare professionals, who go above and beyond to provide compassionate care and unwavering support to those living with MND.

This Friday marks Global MND Awareness Day, a day when we pause to reflect, to acknowledge and to commit ourselves to action. This week, MND Awareness Week, is not just a time for ribbons and hashtags; it is a time to listen.

Yesterday at our annual Parliamentary Friends of MND event, which I proudly co-host with the member for Frome, we had the honour of hearing from Peter, a South Australian who lives with MND. Peter's words will stay with me for a long time. He opened by saying, 'It is an honour to stand here today and speak to you all. Because it is, in fact, not just an honour—but it is a miracle.' Diagnosed over 11 years ago, Peter is a statistical outlier, a medical anomaly. But more than that, he is a husband, a father, a cyclist, a coach, a worker, a friend, and he is now a voice for those who can no longer speak.

He shared with us how his MND journey began with a tremor, a strange weakness in one finger and a long road to diagnosis. At just 29 years old, he sat in a neurologist's office beside his wife, Mandy, and their three-month-old son Josiah. He knew what was coming. He said, 'You can be expecting it, but there's no way to be prepared.' Peter heard what so many others have heard: the diagnosis and then the prognosis—two to five years to live, the life he imagined with his wife and children suddenly slipping away—yet in that moment of devastation he made a decision. Quoting The Shawshank Redemption, he told us, 'I guess it comes down to a simple choice, really. Get busy living, or get busy dying.'

That day, and every day since, Peter has chosen to live. He returned to work, where his company, EML, showed him remarkable compassion and support. He raced road bikes, winning every race he entered in 2016, and when his arms no longer allowed him to ride on the road, he adapted. These days he rides indoors on Zwift at 5am several times a week. He has now clocked nearly 70,000 kilometres without leaving his house, but even more impressive than the distance is the intention behind it. As he said, 'The importance of keeping my body active, as well as the positive impact on my mental health, cannot be understated.' Peter's journey is deeply moving, but it is also rare. As he reminded us:

For the average person who receives this diagnosis, 11.5 years later their family and friends will have been remembering their passing for more than nine [years].

He said his survival means that nine others did not make it past the first year and that he has done nothing to deserve those extra years. He knows that. He carries the weight of that knowledge every day, and he uses it to advocate not just for himself but for the thousands of Australians living with MND who are walking a much harder path.

One of those is a young woman, a friend's stepdaughter, just a few years younger than Peter. She has a daughter, too, close in age to his own, and she has followed the typical MND trajectory. Peter has walked beside this family, witnessing their grief, their exhaustion and their struggle to access appropriate care. He spoke about how hard it is to find experienced, qualified carers. As he said:

Sometimes, in futility, they seek quality care to help her through to the end of her days. The need is so great—and yet to find carers with the necessary experience and training…there are simply so few.

That is where MND South Australia comes in. They are the ones who step into that gap, who show up day after day in people's homes and lives and who provide breathing equipment, communication aids, shower chairs, counselling, loan devices—whatever is needed, however quickly it is needed.

But many South Australians do not realise that MNDSA is not the same as FightMND. As Peter reminded us, 'If I've donated to FightMND, I've donated to you too, right? Unfortunately, no.' Public awareness, thankfully, is growing. The Ice Bucket Challenge that we are seeing all over our socials at the moment, Neale Daniher, the Big Freeze at the 'G—these campaigns have been incredible, but the result is that organisations like MNDSA who deliver day-to-day care are often overlooked in funding.

That is why our government stepped in. The Malinauskas Labor government is proud to support MNDSA with $2.4 million over four years, including $500,000 a year to employ a team of allied health professionals to support people over 65 who are not eligible for NDIS funding, and $100,000 a year for a rapid response equipment loan program, so that people do not wait for vital equipment they need to breathe, move or communicate. In South Australia, 65 per cent of people diagnosed with MND are over the age of 65, and 80 per cent of those people will die before they receive any meaningful federal support from My Aged Care. That is a failure, and MNDSA are the ones who pick up the pieces.

I know this issue deeply. I lost my mum to MND in 2020. I have felt the heartbreak, the slow stripping away of someone you love and the loss of speech, movement and connection. I have also seen what care—when it is done well—can do and I know how critical it is that we continue to support organisations like MNDSA.

Peter reminded us that for him, progression has been slow. That is a blessing, but one with a shadow. As he said, 'If I stay well for a long time, then the medical prognosis is that I will also have a very long and gradual period of significant disability. That is a problem for another day, though.' And when that day comes, he said, 'It will be comforting to know that with your support, MNDSA will still be there.'

That is what today is about, it is about recognising the support that is needed, ensuring that MNDSA will still be there for Peter and for every other South Australian facing this cruel disease. It is about acknowledging that the fight for a cure is vital, but until that day comes, we must fight just as hard for care. It is about honouring the extraordinary strength of families, carers and the MND community, and it is about seeing the humanity behind the diagnosis: the father who cannot throw his children in the air, but who coaches their soccer team; that man who cycles 200 kilometres a week with only the strength of his legs; and the outlier who chooses every single day not to be defined by the number in a prognosis.

To Peter, thank you for standing, for speaking, for reminding us what really matters, and for giving us hope, and to everyone walking this road, we see you, we support you, and we will not stop fighting until there is a cure and until care is guaranteed for all who need it. I commend the motion.

Ms PRATT (Frome) (11:30): I rise to speak to the motion that has been brought to the chamber by the member for Davenport, and I thank her sincerely for bringing a focus on what we recognise on 21 June as being Global Motor Neurone Disease Awareness Day. Certainly, with our reflections today, we will acknowledge the devastating impact that MND has, that we want to bring attention to the plight of those living with the disease and to remember those who have tragically passed.

I do thank the member for Davenport, who not only makes herself vulnerable by sharing her family's experience with the loss of her mum but together we co-convene the Parliamentary Friends of MND to make sure that through our own platform we maintain that level of awareness at least to our colleagues and through comments like this today.

MND, of course, we understand with the national campaign now is a devastating terminal neurological disease with no known cure. We were reminded yesterday that the average life expectancy post-diagnosis is on average about 27 months. Over 2,100 Australians are currently living with MND, including many South Australians. Yesterday, we had the privilege of meeting a number of MNDSA clients, people living with MND who made the effort to come to us. I am always grateful when we host events that people choose to come to us. It is not always a convenient location, but it is a special one. I think people enjoy the opportunity to spend time in Parliament House as honoured guests, whatever the focus might be.

The morning tea yesterday was our annual event for the parliamentary friends group and it was an opportunity to celebrate research, to celebrate carers, to celebrate life, but also to shine a light on the tragic existence of this disease and how important it is for us to sit in the discomfort of people living with MND, to sit in the discomfort of their experience and make sure that we do not just wear our pins and have a cuppa and move on but that we actually embrace and take on the sadness, the grief, and the trauma that comes with the diagnosis.

Part of the work towards finding a cure is the research that goes along with that. South Australia is home to world-leading MND research, particularly at Flinders University under Professor Mary-Louise Rogers. The work that is taking place through this research shows advancements in biomarker detection, non-invasive diagnostics and clinical trials, which I know are making a difference. It is certainly a source of pride for our state, and a hope for families globally, that one day we will crack that nut. I want to acknowledge the work of the Motor Neurone Disease Association of South Australia (MNDSA), as well as MND Australia for their pursuit of a cure.

In referencing Professor Mary-Louise Rogers and her research work, we were also joined yesterday by other colleagues from Flinders, or professionals who work in the MND space. I want to recognise Dr Vinod Aiyappan, a respiratory specialist; Laura Birks, a research coordinator; Associate Professor Peter Catcheside, a researcher; and to thank CEO Karen Percival for her leadership at MNDSA. She has set a course for this state, and I know that she is supported in that by the research team, by the board members, by families, by carers and by clients.

We heard from the deputy, Glen Winkler, who set the scene for our morning tea in regard to how MNDSA interacts with its clients and what supports are available, and the importance of fundraising. The member for Davenport is quite right, I think, that we left either knowing more or being reminded of important details. Only just last weekend nationally, in our national sport, our AFL code of football, the awareness campaign that has been run by Neale Daniher and the Fight MND Big Freeze campaign has had the desired effect to draw attention to this disease.

Millions of Australians have donated tens of millions of dollars to research and developing awareness about the disease, but what might be a good problem to have is that awareness then convinces those who have donated that that is the only way to provide financial support. What we need to see from South Australians in particular is a bespoke approach to donating to MND South Australia because that is where the home modifications, the equipment, the counselling support and the wrap-around team really come into their own, so I join with the member for Davenport through the chamber in always raising the profile of our South Australian organisation, MND.

I had the privilege of interacting with everyone in the room yesterday, but a very special person caught my eye, and her name is Katrina Jensen. We just started talking about teaching and education. She was proud to rattle off to me the different schools that she taught in, in her career, and what a passion she had for learning, what a curiosity she had about the world and life, and the pursuit of knowledge. I think once a teacher, always a teacher. You are driven to impart knowledge. She made me laugh because I discovered that we have a hula hoop making industry in our state. She is a member of the Adelaide hula hoopers, and they have a Facebook page, and it is worth having a look.

Katrina lives with MND, and so it was a sharp contrast of emotions interacting with a woman whose knowledge and brain was rich with information and a love for life, but that same brain is defying her love of life by its attack on her body. I sincerely thank her for making the effort to come to parliament, to be a part of our morning tea, to tell her story, to not wrap it up in cotton wool, but to talk about the harsh realities that she is facing. Without these interactions I am not in a position to share what is now my experience of talking with someone who lives with MND.

The member for Davenport and I will never forget the speech that was delivered by another survivor for now of MND. I am sure I have not phrased that properly, but I blame Peter himself for defying the odds eleven years on from his diagnosis, that he is an outlier. Peter George, our guest speaker, is a young man, a father, and is living with a diagnosis that was given to him over 10 years ago. He set a challenge for himself about how he, his wife and his children are continuing on this journey to live with the impact of MND on his body.

He made us laugh and he made us cry. We had tears of joy and tears of sadness, and I know that the Minister for Health and Wellbeing and I both reflected on the fact that Peter's delivery was one of the best speeches we had ever heard on any topic anywhere. It is just terribly sad that it has to be about his experience living with MND. I said to him that it was never wrong to quote The Shawshank Redemption, and he was quite right that his motivation is always to 'get busy living' or 'get busy dying'. We know what he chose. I commend the member for bringing this motion to the house.

Ms THOMPSON (Davenport) (11:40): I wish just briefly to thank the member for Frome for her contribution and for continuing to partner with me with the Parliamentary Friends of MND. It is always an excellent occasion, those morning teas that we have. We are now four years in and we are building some beautiful relationships with MNDSA and the MND family here in South Australia. Also can I just say that we also acknowledge those carers that were here yesterday with their family members and that live every day with this challenging, awful disease, and we want to remind them that we are in their corner and we are here to support them. I commend the motion to the house.

Motion carried.