Illawarra community to pound pavement for rare brain disease

6 February, 2020

Illawarra community to pound pavement as research continues into rare brain disease

Registrations now open for 2020 Great Illawarra Walk

The Illawarra community is once again rallying around local girls Chloe Saxby and Holly Burns, supporting research into a rare brain disease as part of the 2020 Great Illawarra Walk.

Eleven-year-old Chloe Saxby from Woonona and eight-year-old Holly Burns from Mollymook were diagnosed with an extremely rare and degenerative brain disease almost eight years ago. Vanishing White Matter Disease, for which there is no cure or treatment available, is a progressive disorder that mainly affects the brain and spinal cord (central nervous system).

In 2018 it was announced that – thanks to local charities Saving Chloe Saxby and the Great Illawarra Walk - Australia’s first research into Vanishing White Matter Disease would take place at the Illawarra Health and Medical Research Institute (IHMRI) at the University of Wollongong (UOW).

To ensure that research continues, the Great Illawarra Walk is donating all money raised through the upcoming event directly to the team at IHMRI.

The Great Illawarra Walk, now in its thirteenth year, will be held on Saturday 7 March 2020, with participants walking 40km between Shellharbour and Austinmer.

Chloe’s mother, Nyree Saxby, said community support is crucial in the race to find a cure for Chloe.

“As a small charity raising funds for an extremely rare disease, it can be very difficult to get large scale support and the type of funding that we need to save Chloe’s life and children like her, which is why it is so important for us to receive support from the community and other organisations,” Mrs Saxby said.

“We are asking the community to get involved and join us on Saturday 7 March for a day of fun and fundraising for our cause.”

Associate Professor Lezanne Ooi from the Illawarra Health and Medical Research Institute said the research team is starting to see promising results in their Vanishing White Matter Disease research.

“We have identified drugs that have a protective effect in VWMD cells,” Associate Professor Ooi said.

“We have met with Chloe’s neurologist to share the data and her neurologist is now in the process of assessing medications. Over the next year we will continue the search for drugs / strategies that could be used in combination to try and boost the protective effects.”

Great Illawarra Walk founder Chris Lovatt said the event would not be possible without the support of the Illawarra community year after year.

“Every year when this event rolls around we see the whole community rally together to support children in need,” Mr Lovatt said.

“We have a fantastic team of sponsors who have managed to ensure that 100 per cent of what we raise is donated in full, with no administrative costs or associated fees.

“The family has been under enormous pressure for years trying to raise money for this research to go ahead, and every cent counts.

 “We are very happy to see Australia’s first research into this disease happening right here in Wollongong, and it’s all thanks to our community and donations received through charity events.

“We have been proudly supporting Illawarra children through this event for the past 13 years and we really hope to make a difference to Chloe and Holly, and other children who are in a similar position.”

Since its inception in 2008 the Great Illawarra Walk has raised more than $830,000 for children in need throughout the Illawarra, including Camp Quality and Wollongong Hospital’s Neonatal Unit. Thousands of people have participated in the annual event, which has grown from a small group of 120 walkers to a record year of more than 800 walkers in 2019. The committee is hoping to exceed 1,000 walkers in 2020.

To register or donate to the 2020 event, visit