Tim Wilson (Goldstein, Liberal Party) Share this | Link to this | Hansard source

During the election, I was contacted by Kathlene Jones, the founder and CEO of the Prader-Willi Research Foundation Australia. Her daughter, Chloe, was the catalyst for the Prader-Willi Research Foundation. Chloe is in prep at Brighton Beach Primary School and is a real superstar go-getter. Prader-Willi syndrome is a randomly occurring disorder where some of the genes in chromosome 15 are inactive or missing. After receiving news of a positive genetic test, parents of affected children have, of course, a lot to process and deal with. Their children have a life expectancy of potentially less than 30 years. They will have developmental delays, challenging behaviours, mental illness and the hallmark feature of the disease—a feeling of relentless hunger. It's bitter reality, but the strength, resilience and courage those kids show to do things that most kids take for granted are truly remarkable. The condition is largely unknown even though it affects one in every 15,000 babies.

The Prader-Willi Research Foundation has launched a funding campaign called Finding 15 to raise awareness and funds to drive innovative research and find new treatments for Prader-Willi syndrome. The first weekend of May featured the inaugural Finding 15 Walk to Change Life which saw over 800 people across five locations in Australia come together to walk towards better treatment for Prader-Willi syndrome. Sandringham Athletic Club in Hampton had a very relaxed atmosphere where the Goldstein community and those from surrounding communities stood shoulder to shoulder in support of the Finding 15 campaign. I'd like to acknowledge Kathlene Jones and her outstanding advocacy for young Chloe, as well as those families touched by Prader-Willi syndrome all over Australia.

On the subject of community led philanthropy, Connor's Run is just around the corner in September. If you want to see me make a complete dill of myself and run nearly 20 kilometres, you can come along.

Joel Fitzgibbon (Hunter, Australian Labor Party, Shadow Minister for Agriculture and Resources) Share this | Link to this | Hansard source

You won't make it!

Tim Wilson (Goldstein, Liberal Party) Share this | Link to this | Hansard source

This will be the seventh year of the charity event organised by the Robert Connor Dawes Foundation, which was established by Connor's parents after his battle with terminal paediatric brain cancer. As of today, there are 225 spots left, and you can sign up at connorsrun.com. And I hate to break it to the member who was interjecting, but I ran it last year, I ran it the year before and I'm going to absolutely smash it this year.

Joel Fitzgibbon (Hunter, Australian Labor Party, Shadow Minister for Agriculture and Resources) Share this | Link to this | Hansard source

I hope I was wrong.

Tim Wilson (Goldstein, Liberal Party) Share this | Link to this | Hansard source

Money raised during Connor's Run 2019 will count towards a $1.25 million pledge to fund new research projects—a combination of preclinical studies and trials based studies. Depending on your fitness level, there is an 18.8 kilometre run from Hampton or a 9.6 kilometre run or walk from St Kilda if you like the softer option. Both finish on the banks of the Yarra River just outside the central business district of the great city of Melbourne. The run starts with a warm-up, coffee, yoga stretching and some dance aerobics. And I know the member for Hunter will want to do some of those dance aerobics. He hides it, but it's innate in who he is. To help offset the muscle soreness, the afterparty barbecue on the Yarra includes DJs, bands, fun activities at the finish line and even, occasionally, a couple of celebrities. Every dollar raised helps fund the innovation that will lead to better outcomes for paediatric brain cancer patients and support existing patients in the interim.

Thanks to the level of community support across the last three Connor's Runs—and, as I have reminded the member for Hunter, I was there and I finished them—the AIM BRAIN Project is now fully funded. This means world-class molecular diagnostic testing is available to every child in Australia and New Zealand. This world-leading technology helps doctors better understand and classify individual tumours. With a clearer understanding of each tumour, specialists can create better, more personalised treatments based on both the placement of a tumour and its molecular build. The RCD Foundation has also joined forces with the Financial Markets Foundation for Children, the incredible work of the federal government—because when you deliver a budget surplus, you can support important health outcomes, particularly under the leadership of the current health minister—and Carrie's Beanies 4 Brain Cancer to pledge a total of $10 million over five years for paediatric brain cancer clinical trials. Now that the AIM BRAIN Project is firmly in place, it can determine the best clinical trials available for each child.

Of course, these projects don't come about by accident; they come about because people take initiative and do the right thing. In memory of Connor, his parents, Liz and Scott Dawes, set up the RCD Foundation to set an example not just for our community—though it has—but of course for every parent who wants to support the memory of their lost child.

House adjourned at 20:00