Carol Brown (Tasmania, Australian Labor Party) | Link to this | Hansard source

I rise tonight to recognise Global Motor Neurone Disease Awareness Day, which was marked on Sunday 21 June. Motor neurone disease, MND, is one of the hardest diseases a person and their family can face. It damages the nerve cells that control movement. Over time, people lose the ability to walk, speak, swallow and breathe. There is no cure, and the average life expectancy after diagnosis is only about two to three years.

About 2,700 Australians are currently living with MND. For every person diagnosed, there are family members, friends and carers whose lives also change—often very quickly. This year, MND Australia marked global MND day with its Sprinkle Hope campaign. The campaign features the blue cornflower, which is recognised around the world as a symbol of hope for people affected by MND. It is a fitting symbol for people living with MND and for the families and carers who stand beside them. The message of the campaign is simple: sprinkle hope for a cure and sprinkle kindness for today.

This week, members and senators received a cupcake and a small bag of edible blue cornflower petals from MND Australia. I encourage everyone in this parliament to sprinkle the petals, enjoy the cupcake and take a moment to think about the people and families affected by MND. Hope means supporting research, finding better treatments and continuing the search for a cure. Kindness means giving people living with MND the help, care and understanding they need right now. That might mean checking in on somebody, cooking them a meal or helping with transport, giving a carer a break or simply taking the time to listen. These small acts can make a real difference to a family going through a difficult time.

This was also the first global MND day since the passing of Neale Daniher. Neale was diagnosed with MND in 2013, when the average life expectancy was just 27 months. He lived with the disease for 13 years and used that time to change the way Australians understood MND. Through FightMND and the Big Freeze, he helped raise tens of millions of dollars for research and brought Australians together in the search for a cure. He faced what he called the beast with courage, humour and determination. But Neale's greatest achievement was not only the funds he raised and the attention he brought to the disease but also the hope he gave to people living with MND and their families.

Neale showed that one person, with the support of a strong community, can make a real difference. His legacy will continue through FightMND, the Big Freeze and the work of researchers, health workers, families and supporters across Australia. Neale's work also reminds us that raising awareness is only the first step. People living with MND need care that can change as quickly as the disease does. Families need clear information, practical help and services that are there when they need them. Carers also take on a huge responsibility. They're often partners, children or close friends that are providing daily care while also dealing with fear, sadness and uncertainty.

I'm proud to serve as a co-chair, with Alex Hawke MP, of the Parliamentary Friends of Motor Neurone Disease. The friendship group brings members and senators together from across the parliament to hear directly from people living with MND, their families, their researchers, health workers and advocates. It also keeps MND on the agenda in this place. We must keep listening to people living with MND and their families, we must keep supporting researchers and health workers, and we must keep backing organisations like MND Australia and FightMND which work every day to improve care and bring us closer to a cure.

There is still much we do not know about MND, but we know that no person or family should have to face it alone. Tonight, I thank MND Australia and the entire MND community for their work. I also acknowledge every person living with MND, every family member, every carer and every friend who continues to show great strength.

Slade Brockman (WA, Deputy-President) | Link to this | Hansard source

Thank you, Senator Brown, for your advocacy.