Perth daughter's statewide parkrun mission honours Mum lost to rare brain disease
Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney
WA resident Simone Brown is undertaking an ambitious statewide running challenge in honour of her mother, who passed away on 24 February after living with the rare genetic brain disease CADASIL.
What began as a tribute while her mother was still alive has now become a legacy.
Simone launched her campaign, “CADASIL – Raising Awareness One Run at a Time,” at Woodbridge Riverside parkrun in January. She is now committed to running at every parkrun across Western Australia to raise both awareness and funds for research into CADASIL - a rare, progressive genetic condition that affects the small blood vessels in the brain.
Her mother was diagnosed in 2020 after years of unexplained fatigue, confusion, and balance issues, following the earlier loss of Simone’s uncle to the same disease. In February, after a long and difficult decline, she passed away surrounded by her family.
“Mum was carefree, vibrant and independent,” Simone said. “She loved gardening, swimming, walking and volunteering at her local op shop – and loved looking after her chooks. Watching her gradually lose her mobility and independence was heartbreaking. But continuing this challenge gives me purpose.
“My ultimate hope in taking up this challenge is for better awareness and understanding about this condition.”
CADASIL - short for Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy - is caused by a mutation in a single gene, meaning children of an affected parent have a 50 per cent chance of inheriting it. Symptoms often begin between the ages of 30 and 50 and can include stroke or ministroke, migraine with visual disturbance, cognitive decline, depression, anxiety, apathy and fatigue.
There is currently no cure or specific treatment, with doctors focusing on managing cardiovascular risk factors to reduce stroke risk. It is estimated that around 1,350 Australians may be living with CADASIL, though researchers believe it is underdiagnosed.
Funds raised through Simone’s campaign support the AusCADASIL Research Program at the Centre for Healthy Brain Ageing (CHeBA) at UNSW Sydney - the first and only dedicated national study of CADASIL, led by Dr Danit Saks under the direction of Professor Perminder Sachdev AM.
Professor Sachdev said community-driven efforts are critical.
“Simone’s determination in the face of personal loss is remarkable,” Professor Sachdev said. “CADASIL remains under-recognised, and research is essential to better understand how the disease progresses and how we might intervene. Support from the community helps us move closer to that goal.”
Simone says the support from local runners and the broader WA community has been welcomed and extremely encouraging.
“As difficult as the last few years have been, we all still shared some very special moments with Mum,” says Simone. “It also gave us the opportunity to be open with our emotions and our affection, which I will cherish always. I am comforted that she is free and at peace now.”
“I can’t change what happened to Mum,” she said. “But if we can raise awareness, fund research, and give another family hope for better answers in the future - then her story will mean something bigger.”
Simone will continue running across WA throughout 2026 until she reaches her goal of completing every Parkrun in the state and raising $10,000 for research.
Campaign: CADASIL – Raising Awareness One Run at a Time
Fundraising Page: https://cadasil-awareness-one-run-at-a-time.raiselysite.com/
About CHeBA
The Centre for Healthy Brain Ageing (CHeBA) at UNSW Sydney, co-directed by Professor Perminder Sachdev AM and Professor Henry Brodaty AO, is a world leader in research into brain ageing and dementia. The AusCADASIL Research Program, led by Dr Danit Saks, is dedicated to understanding the genetic and biological mechanisms of CADASIL to guide diagnosis, management and the development of future treatments.
Contact details:
Campaign: CADASIL – Raising Awareness One Run at a Time
Fundraising Page: https://cadasil-awareness-one-run-at-a-time.raiselysite.com/
Media Contact:
Simone Brown | [email protected] | 0431 570 550
Heidi Douglass | [email protected] | (02) 9385 0410
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Simone Brown and Mum.jpg
Simone Brown and her Mum who lived with the rare genetic brain disease CADASIL.
