Tim Wilson (Goldstein, Liberal Party) Share 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.

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