Chris Lovatt, Associate Professor Lezanne Ooi, Kara Lamond, Chloe Saxby, Emelie Wells, Nyree Saxby, Martin Merritt and Ruth Lovatt. Photo by Alex Pike.

Testing potential treatments to slow the progression of Vanishing White Matter Disease

Research into Vanishing White Matter Disease (VWMD) began at the Illawarra Health and Medical Research Institute (IHMRI) over 12 months ago. 

Led by Associate Professor Lezanne Ooi, the research involves cutting-edge stem cell technology. Over many months in IHMRI’s laboratories, skin cells were reprogrammed into stem cells. Brain cells were then generated to test FDA approved drugs. 

“We are testing thousands of drugs in the laboratory to find something that will stabilise and protect Chloe’s cells against further deterioration caused by this genetic disease” said Associate Professor Lezanne Ooi.

“We have started to identify drugs that can protect the cells and need to continue this testing to check whether these drugs could help,” she added. “We just need to slow the progression of this disease in Chloe and buy some more time for her and other children suffering from VWMD.” 

Nyree Saxby says Chloe’s health is starting to deteriorate. 

“We’ve been so blessed that Chloe’s health has been relatively stable over the past 24 months, but now we’re starting to see some signs of the next stage of this cruel disease,” said Nyree Saxby.

“Chloe’s specialists have confirmed the onset of optic atrophy which is one of the symptoms of the disease and will eventually lead to blindness. The thought of Chloe going blind breaks my heart.”

VWMD is the breakdown of myelin or insulation around the nerves. When this protective cover disappears nerve connections are affected. 

This insulation breakdown could also affect the nerves that allow Chloe to hear, speak and swallow. 

“We are already seeing other signs that the disease has been progressing faster than we anticipated,” added Nyree Saxby.

The news comes as a new injection of funding for research into VWMD is being presented to IHMRI.

Organisers of the Great Illawarra Walk will present a cheque for $150,000 to IHMRI on Wednesday 10 April. 

“The funding boost for research couldn’t come at a more critical time,” said Nyree Saxby. 

Associate Professor Lezanne Ooi says the funding will enable her team to ramp up their testing of potential drugs.

“The more time my team can dedicate to this project the greater opportunity we will have to better understand VWMD and work out how we can stop it,” she added.

On 2 March this year, more than 800 people took part in the Great Illawarra Walk, hiking 40 kilometre from Shellharbour to Austinmer to raise money for the research at IHMRI.

“We had a target of one hundred and fifty thousand dollars and we surpassed that,” said event organiser Chris Lovatt.

“The number of walkers and the money raised again just goes to show what Chloe Saxby means to the Illawarra community and how dedicated the region is in rallying to save her life, and also Holly Burns from Mollymook.”

“We can’t thank the walkers, local businesses and the Burns and Saxby families enough for their support for this great event,” he added.

The 2020 Great Illawarra Walk has been launched and Chris Lovatt has already dedicated next year’s fundraising efforts to VWMD research at IHMRI.

Registrations for next year’s event are now open. You can register as a team or individual at 

Related stories

Stepping out for research into vanishing white matter disease

Support grows for rare genetic disease research

Media coverage

The Illawarra Mercury

11 April 2019: Great Illawarra Walk raises over $150,000 for Vanishing White Matter Disease research

Media contact

Louise Negline, Communications Coordinator

t: 4221 4702

m: 0417 044 867


Top photo:  Chris Lovatt, Associate Professor Lezanne Ooi, Kara Lamond, Chloe Saxby, Emelie Wells, Nyree Saxby, Martin Merritt and Ruth Lovatt. Photo by Alex Pike. Photo by Alex Pike

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