Anne Urquhart (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

Earlier this month, alongside my sister Jan Robinson, I joined the ranks of millions worldwide who have undertaken the ice bucket challenge. As everyone in this place would know, the ice bucket challenge is an awareness and fundraising campaign. It sprouted in the United States as a campaign to raise funds for ALS, or motor neurone disease as it is referred to in Australia. In only a few short months it has become a global phenomenon that has attracted the support of cultural luminaries like Oprah Winfrey, Bill Gates and Britney Spears. Even Homer Simpson took a break from his busy 2D life to take part. For my part, I contributed $100 toward Motor Neurone Disease Australia. I nominated that the money should go directly to the organisation's research arm, the Motor Neurone Disease Research Institute of Australia, to help fund research efforts to fight this debilitating disease.

Today I would like to spend a little time talking about the disease itself and the reasons why I took the challenge on. Across the world there are thought to be 400,000 people living with motor neurone disease and, of these, 100,000 people will lose their lives each year. In Australia two people die from this crippling condition every single day, and in 24 hours another two people who have been living with MND will lose their lives to it. MND is a degenerative condition that affects the nerves that send signals to muscles. It is a rapidly progressing and ultimately terminal neurological condition with no known cure. From diagnosis, life expectancy is a very short 27 months, although around 10 per cent of people live for 10 years or more. Over time people with the disease will progressively lose the use of their limbs and the ability to speak, swallow and, ultimately, breathe. Their families face the devastating experience of watching their loved ones slowly waste away. Throughout the development of the disease, the mind and senses usually remain intact. Currently there is no cure for motor neurone disease nor is there an effective treatment. That is why it is so important to raise funds for research that will improve the quality of life of people living with MND and their families.

Today I would like to share with you the story of the person who inspired me to take on the ice bucket challenge. That person is north-west local Barry Pateman, or Lurch as I called him when we worked together at the Simplot factory in Ulverstone many years ago. Barry lives in Burnie with his wife, Karen, and his two young children, Charlee and Ethan. He was diagnosed with motor neurone disease last year. Since then he has lost 43 kilograms and he is still deteriorating. He is now wheelchair bound and needs to be fed through a tube. His respiratory muscles have failed and he has to rely on his stomach muscles in order to breathe.

It was great to see the Leighland Christian School in Burnie, where Barry's children go, throw its support behind the Pateman family by staging an ice bucket challenge event at one of the school's Friday assemblies last month. Barry's six-year-old daughter, Charlee, kicked off the fundraising effort by tipping a bucket of icy water over her teacher, Melanie Watts—probably something that we all would have liked to do to our teachers at some stage. It is said that the reason for the icy water is that it mimics, if only for a fleeting second, the breathlessness and the struggle to get air that motor neurone disease sufferers can struggle with every day, and I can attest to that. Also present was Barry and his wife, Karen, who gave a heartfelt insight into the relentless reality of what life is like with the disease and how hard it can be for Barry just to do the basic things that all of us take for granted.

The day raised over $600 for Motor Neurone Disease Australia—a great effort. If the ice bucket challenge can bring us even an inch closer to a treatment or a cure of this cruel disease for people like Barry and his family, then I am proud to have taken part. Of course, there will always be doubters. Recently there has been a rash of criticism about the ice bucket challenge. Many have said that the message of motor neurone disease is getting obscured in a cloud of celebrity, stunts and selfies. While there may be an element of truth in this, it is impossible to ignore the incredible achievements of the challenge in raising funds for research and support for families living with this death sentence. It may be the most successful global fundraising effort the world has yet seen—and we cannot deny the outstanding results. Firstly, the influx of financial support for motor neurone support organisations has been simply massive. In the United States, the ALS Association recently reported additional funding of more than $110 million from three million donors in America. This is particularly remarkable when you consider that in a similar period last year the organisation had only received $2.8 million. The money will support the association's research, care services and public policy initiatives.

Ms Patricia Stanco, the regional care manager for the ALS Association Florida Chapter, recently gave a real insight into the true human value of these big numbers. She described her colleagues' reaction when they found out how much had been donated:

Jaws dropped. Tears formed. The group was overwhelmed and for a distinct moment, silent. I realized I was witnessing hope. It was so powerful—I will never forget it.

Similarly, the Motor Neurone Disease Association in the United Kingdom has received a staggering £6 million pounds from 750,000 donors. In just two weeks, they raised the equivalent of six month's income.

Back home in Australia, Motor Neurone Disease Australia has received $2 million from 47,000 Australian supporters. This is a massive 15-fold increase in the amount of money they would normally have expected to raise. The influx of funds has allowed Motor Neurone Disease Australia to initiate an Ice Bucket Challenge research grant which will start in 2015. There is no doubt that if the Ice Bucket Challenge was not around this would not have been possible. And across the world, the money is still pouring in. The cause of the degeneration in motor neurone disease is still a great mystery, but this global fundraising boost will make a huge difference to the research capacity.

The second benefit of the challenge has been a massive boost to public awareness. While motor neurone disease goes under different names in different countries, people are now learning more about the condition and its impacts on those living with it and their families. The challenge has very effectively elevated motor neurone disease into global consciousness. We should recognise what an achievement this is in a world that is awash with information and competing messages that seem to engulf us wherever we turn.

Cynicism is an easy response to things like the Ice Bucket Challenge that seems to have reached a critical saturation point. However, I would urge people who choose this critical response to have a second think—to think about the reality of this disease, which sentences people to a slow wasting death and offers no prospects of a treatment nor a cure; to think about people like Lurch and his young family who have had their lives torn apart and their future stolen; and then to think about what a world might look like that is free from motor neurone disease.

Senate adjourned at 22:24