Scott Morrison (Cook, Liberal Party, Shadow Minister for Immigration and Citizenship) Share this | Link to this | Hansard source

The Sutherland shire is renowned for its hard-working, dedicated volunteers, who make the shire a better place to live and raise a family—it is my job to do all I can to ensure it stays that way. The Cook Community Classic harnesses this community spirit to empower our volunteers to help raise funds and raise awareness for more than 30 local community organisations and charities, including our local Bate Bay surf clubs, who joined with me in 2008 to create this unique event. The classic involves a major raffle and a gala ball, and culminates in a family community event at Cronulla Beach and Cronulla Park, featuring a surf carnival hosted by the four Bate Bay surf lifesaving clubs, which Wanda won this year. Since the inaugural event in 2008, the classic has raised more than $275,000, including just over $75,000 at last year's event. I especially want to thank IMB for its generous support and Julie Adams for her tireless efforts in organising this event.

It is one of the participating charities that I will draw the attention of the House to today. Gymea resident Dr Karen Crawley has for the past few years helped to run the Australian Mitochondrial Disease Foundation, inspired by her daughter's struggle against this debilitating and often fatal illness. Mitochondrial disease is a genetic disorder that robs the body source of energy, causing multiple organ dysfunction or failure. The mitochondria are the powerhouses of our cells, providing the body with over 90 per cent of the energy it needs to sustain life. Mitochondrial disease reduces the ability of the mitochondria to produce this energy. When mitochondria do not work properly cells begin to die until eventually whole organs fail. It is a life-threatening disease that has struck Dr Crawley's daughter Kara. Like most children who suffer from this cruel affliction, Kara is slowly being robbed of her senses, her brain function and, sadly, her life. It is a devastating scenario and unfortunately one that many families and individuals suffer today. Indeed, doctors have told Karen that mitochondrial disease may also affect her 11-year-old son, Braden, and her.

Every year 50 children will develop a severe or life-threatening form of mitochondrial disease. For all of the cruelty of this disease and its prevalence, it remains at the bottom of the ladder in terms of research, knowledge and funding. Due to dedicated volunteers like Karen, the foundation is working hard at advocating for research into this terrible disease and offering support to those affected by it. Known in the medical profession as the 'notorious masquerader', mitochondrial disease can literally defy diagnosis for years and is difficult to treat—and a cure remains elusive. So little is known about it that often sufferers are diagnosed only on their deathbed or autopsy. Many patients are moved from specialist to specialist at great cost and with little result or can be sent to psychologists or psychiatrists, convinced by experts that there is nothing physically wrong with them. Proper diagnosis could lead to more effective and earlier treatment as well as save patients thousands of dollars in consultations and medicines. Researchers also increasingly believe that mitochondrial dysfunction may be a significant factor in a wide range of major diseases and that improvements in mitochondrial medicine may eventually provide a key to better health and quality of life in older age.

Each year the foundation runs an annual Stay in Bed Day in September as part of Global Mitochondrial Disease Awareness Week. It encourages people to dress up in their pyjamas and hop into bed, the significance being that one of the first signs of the disease is a persistent fatigue. Schools and kindergartens in my own electorate of Cook are already getting involved, including Bonnet Bay primary school and the Wyralla Road Kindergarten at Miranda.

This is a matter that I think needs the attention of this House and of people on both sides of this chamber. It is something that Karen and her family struggle with on a daily basis. I am very pleased that in a small way the Cook Community Classic has been able to provide some support in their struggle and fight. I look forward to making announcements over the course of the year on other things we are able to do, particularly in the course of the special awareness week in September where we hope to raise further funds for mitochondrial disease research and support.

I am proud that the Cook Community Classic has been able to, as I say, support not only this worthy cause but so many other worthy causes within our local community. I look forward to that continuing well into the future. There are many who have supported this event. The local surf clubs have done an outstanding job. They joined with me early in starting this event a number of years ago. Our surf clubs are well known for looking out to sea and supporting and saving the lives of people in our community. This is an event where they turn back to the land and provide that same support to people in our community throughout their lives. My thoughts and prayers are with Karen and the rest of her family at this time and we look forward to the support we can give them in the future.