Fundraising efforts continue for VWMD research at IHMRI

18 January, 2019

The below article was originally published at and has been republished with permission.

The Great Illawarra Walk organisers are aiming to raise $150 thousand to help find a treatment for Chloe Saxby

It is less than two months until the annual Great Illawarra Walk and for the second year, all money raised will go towards research into Vanishing White Matter Disease (VWMD) at the Illawarra Health and Medical Research Institute (IHMRI). 

IHMRI Associate Professor Lezanne Ooi has welcomed the fundraising efforts and is urging the community to support Chloe Saxby and her family by joining the walk. 

“A dedicated team of researchers is working hard to find a potential treatment for Chloe and other children suffering from VWMD, but research can be slow and expensive. The more resources we have to dedicate to this project, the more research we can do to find some answers,” said Associate Professor Ooi. 

“The money raised from last year’s walk, helped to pay for the salary of a dedicated researcher, Dr Neville Ng, who has helped grow skin cells into stem cells. The stem cells are now being cultivated into brain cells and we have started testing potential drug treatments for VWMD,” she said. 

Molecular Biologist Dr Tracey Berg has also recently joined Associate Professor Ooi’s team on the project.  

“We want to continue supporting this important research at IHMRI for Chloe and other children who suffer from this dreadful disease,” said Nyree Saxby. 

On 2 March, the Great Illawarra Walk will kick off from Shellharbour Village and finish at the Headlands Hotel in Austinmer. 

“We have a target of one hundred and fifty thousand dollars this year and we really need your help to reach it,” said Nyree Saxby. 

“We’ve just registered our family, and we urge you to make this part of your 2019 ‘get fit goal’,” she added.  

Event organiser Chris Lovatt says last year’s hot weather prompted them to rethink the two day, 100-kilometre course. 

“This year, we really want as many people as possible to take part, it’s now only a 40 kilometre walk and there’ll be live entertainment at the end of it,” said Chris Lovatt. 

“Our fundraising target is fifty thousand more than last year, so we really need to get as many local businesses and community teams involved,” he added. 

Associate Professor Lezanne Ooi says generous donations from the Saxby’s, The Great Illawarra Walk and the Illawarra community have allowed staff more laboratory time which has been critical for understanding the disease and what goes wrong in the cells of VWMD patients. 

“Mutations in the genes for EIF2B proteins cause VWMD and lead to the loss of certain cell types in the brain called oligodendrocytes and astrocytes,” said Associate Professor Ooi. 

“Cells from VWMD patients are under stress due to faulty EIF2B proteins, by repairing the function of these proteins and restoring balance to their production we can potentially reduce the symptoms of the disease,” she added. 

The life expectancy of sufferers of VWMD is between five and ten years from the onset of the disease. 

Chloe Saxby was diagnosed with VWMD at just three years of age.

This year she will celebrate her 11th birthday.

The Great Illawarra Walk