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THURSDAY, 23RD OCTOBER 2025 Local people. Local news.
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Big hearts, big steps for Charlie Community rallies for annual Run, Walk and Roll fundraiser. by MOLLY SHANNON Natal ie and Scot t Johnston recently hosted their annual Run, Walk and Roll fundraiser for t h e M a l a n Sy n d ro m e Foundation at their farm near Coonabarabran. The f ive - k i l omet re event raises funds and awareness for the rare genetic disorder, Malan Syndrome – a cause that’s deeply personal for the Johnstons. In 2020, their son, Charlie, was diagnosed with Malan Syndrome. Malan Syndrome i s ca te g o r i s e d a s a n overgrowth disorder and was officially identified in 2010. Approximately 300 people across the world have been diagnosed with the disorder. “Charlie is eight-yearsold and he was born with a lot of difficulties,” Natalie said. “A f t e r q u i t e a l o t of d if fe rent tests and examinations, he eventually had his genome sequenced and was diagnosed with Malan Syndrome, which is a very rare genetic disorder. “It’s a tiny little mutation in one gene called the NF1X gene, which is involved in brain development and growth. “After we found out he had this disorder, we were then linked in with t h e M a l a n Sy n d ro m e
F o u n d at i o n , w h i c h i s based in the United States, and it’s run by a group of parents. “Ma l an Sy nd rome Foundation is very well organised, they have a scientific and medical advisory board and their goal is to fund research and awareness into Malan Syndrome.” Each year, families join the Run, Walk and Roll, either virtually or in person. The Johnstons have taken part for several years, inviting friends and locals to their farm in support of Charlie and others living with the condition. This year was special for the Johnstons, as they partnered with two other families who have loved o n es d i a g n o s e d w i t h Malan Syndrome. “It was just amazing, we just all had this instant connection,” Natalie said. “Particularly my son and this other young boy – they just had this amazing connection and they just sat and laughed at each other and made noises in their own language together. “I felt like I’d known them my whole life, these families. One family had driven from Brisbane, and the others came from the Clare Valley in South Australia – they’d driven as well over a couple of days.”
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1 - Coonabarabran Times, Thursday, 23 October 2025
The Peet, Johnston and Kokolis families formed a special connection at the annual Run Walk and Roll fundraiser for the Malan Syndrome Foundation, held at Coonabarabran. Photo: Emily Rouse