Support grows for rare genetic disease research

11 April, 2018

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

IHMRI research into Vanishing White Matter Disease has received a significant financial boost after the organisers of the Great Illawarra Walk donated $100 thousand dollars.

The money was raised last month as part of the 100 kilometre coastline walk for Chloe Saxby.

The funds will assist research already underway with Dr Lezanne Ooi and Associate Professor Justin Yerbury to better understand VWM and potentially find a treatment for Chloe Saxby.

Read more about their research.

“This act of generosity by the Illawarra community will help fund the ongoing research into Vanishing White Matter Disease here at IHMRI,” stated IHMRI CEO and Executive Director, Professor David J. Adams. “Previously, the only research into VWM was happening overseas. At IHMRI we have the technology and skills right here to potentially find an effective drug treatment for Chloe.”

The money raised from the Great Illawarra Walk will also pay for an additional researcher to be dedicated to the research.

Through the donation of skin cells from Chloe and her family, researchers will be able to grow a replica of the disease and begin testing approved drugs to hopefully find a treatment that works.

“Thank you to the Great Illawarra Walk founder Chris Lovatt and his family for supporting this important research,”  added Professor Adams. “And thank you to the many people who participated in the event to raise awareness of the disease and show support for Chloe Saxby by contributing such a significant amount money for research right here in the Illawarra.”

Organisers of the Great Illawarra Walk also announced that money raised from the 2019 fundraising event will again be donated to IHMRI to continue the research into Vanishing White Matter (VWM) Disease.

The Burns family

The Burns family from Mollymook are also continuing to support IHMRI research into VWM.

Six year old Holly Burns has VWM and three of her four siblings carry the gene.

Holly and her parents, Amanda and Daniel have donated their skin cells to assist Dr Lezanne Ooi’s stem cell research into VWM.

The Burns family are also assisting to raise additional funds for the IHMRI research.

On 5 May, Amanda Burns will be shaving her long locks at a fundraising event at Mollymook golf club on the NSW, South Coast.

Both the Saxby and Burns families hope an additional $50 thousand dollars can be raised to further progress research and potential a cure for their daughters.