Wollongong girl, Chloe Saxby, and the Illawarra Health and Medical Research Institute (IHMRI) are set to benefit from the August round of the #GreaterIllawarra program with the winning funds to be donated to the Institute’s research into finding a cure for Vanishing White Matter Disease (VWM), a rare terminal brain disease that Chloe suffers from.
For winning this month’s community vote, Saving Chloe Saxby will donate the $2,000 to IHMRI, which will assist Neuroscientist, Dr Lezanne Ooi and her team to continue their promising research into finding a cure for VWM.
Vanishing White Matter Disease is an extremely rare genetic and neurodegenerative disorder that is usually diagnosed in patients between the ages of 2-6 years. Within a short period of time, it starts affecting the nervous system, causing problems with movement and mental functioning, eventually causing blindness, deafness and loss of motor skills.
The average life expectancy of VWM patients is 5-10 years from the onset of the disease with the majority of patients never making it to their teens.
According to Chloe’s mother, Nyree Saxby, as one of only seven known cases in Australia and 200 worldwide, the life-changing stem cell research currently underway at IMHRI is giving Chloe and children like her hope that a treatment or cure will soon be found.
“Unfortunately there is no treatment or cure for VWM so this funding from Greater Bank will help accelerate the progress of this research project, which costs $250,000 a year to run. Research can be slow and expensive so the more resources we can dedicate to the research project, the more chance they have of finding a cure,” Nyree explained.
“After four years of non-stop fundraising, we are thrilled to have won the August round of the #GreaterIllawarra program which will help us to continue funding this critical research and hopefully save other families from going through what we have had to endure.” | Nyree Saxby
Both runners-up for the August round, YMCA Kemblawarra and Scramble Dance Crew Through Streetbeatz Dance Studio will each receive a $500 grant to go towards their operational costs.
Greater Bank’s Regional Manager, Greg Creagan, said Chloe’s story highlights how the #GreaterIllawarra program continues to provide financial support to those who need it most.
“We are committed to supporting the communities that support us and are extremely proud to be able to help Chloe in some small way by providing funding that can help continue the research into finding a cure for this rare brain disease.”
“We are thrilled to have been able to provide $42,000 in funding to well deserving community groups in the Illawarra region since we first started the program. This is a wonderful example of how a funding contribution from the #GreaterIllawarra program can go a long way towards helping make a difference to the lives of Chloe and other children suffering from VWM,” said Mr Creagan.
The #GreaterIllawarra program continues in September, with voting now open until Wednesday, 25 September. Northern Gymnastics Academy, Recovery Camp and APYACC Food Assistance and Healthy Eating Program are in the running to share in $3,000 in funding available this month.
To submit your vote either go online to greater.com.au/greaterillawarra or visit any Greater Bank branch. Greater Bank is also calling for nominations for future funding rounds. Community groups can do so by visiting greater.com.au/greaterillawarra and telling us in 100 words or less how the organisation is helping to improve lives of locals.