Dr Lezanne Ooi. Nyree Saxby and Chloe Saxby

New developments in stem cell research

Nine year old Chloe Saxby was diagnosed with the extremely rare genetic Vanishing White Matter Disease (VWM) in 2012.

There is currently no treatment or cure.

Now IHMRI researchers say new developments in stem cell research may hold the key to understanding VWM which could lead to a potential treatment for Chloe.

IHMRI neuroscientist Dr Lezanne Ooi, is heading up the research team along with molecular biologist Associate Professor Justin Yerbury.

“Currently the only research into VWM is happening overseas, we have the technology and skills right here to potentially find an effective drug treatment for Chloe,” said Dr Ooi.

Stem cell research at IHMRI will enable scientists to grow a replica of VWM in a test tube so FDA approved drugs can be tested.

The research will utilise new technology recently acquired by IHMRI.

There are seven children in Australia battling the disease and 170 worldwide.

The Saxby family launched the Saving Chloe Saxby campaign to raise $2.6 million dollars for ongoing research into the disease.

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

The next major fundraising effort will be the Great Illawarra Walk on the 17th and 18th of March.

“We have a very large target to reach in the hope to save Chloe and children like her and we cannot do it alone. Every dollar raised from this walk goes towards finding a cure for Vanishing White Matter Disease,” said Nyree Saxby.

All money raised at this year’s event will go to the Saving Chloe Saxby campaign.

Event organisers are hoping to raise $150,000 to support the stem cell research for Chloe at IHMRI.

Kiama MP Gareth Ward is again urging the community to support the March fundraising event.

“I am very pleased to be supporting this Great Illawarra Walk fundraiser for Chloe Saxby and it is terrific that this research can be carried out locally at the Illawarra Health Medical Research Institute,” Mr Ward said.

To register for the 2018 event, visit www.greatillawarrawalk.com

To find out more about Chloe and her story visit www.chloesaxby.com.au.

Statistics on Vanishing White Matter Disease 

  • Leukoencephalopathy with vanishing white matter is a progressive disorder that mainly affects the brain and spinal cord (central nervous system).
  • This disorder causes deterioration of the central nervous system’s white matter, which consists of nerve fibers covered by myelin.
  • In most cases, people with leukoencephalopathy with vanishing white matter show no signs or symptoms of the disorder at birth.
  • People with this disorder are particularly vulnerable to stresses such as infection, mild head trauma or other injury, or even extreme fright.

Source: U.S National Library of Medicine

Media coverage

Illawarra Mercury

16 February 2018: IHMRI researchers join fight to save Chloe Saxby

ABC Illawarra

Media contact

Louise Negline, Communications Coordinator
T: +61 2 4221 4702
E: lnegline@uow.edu.au 

Top picture: Dr Lezanne Ooi, Nyree Saxby and Chloe Saxby in IHMRI’s laboratories.

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