Chloe Saxby and Vanishing White Matter Disease Incorporated
We are dedicated to saving not only Chloe's life but the lives of other children around the world suffering with Vanishing White Matter disease, by funding the research to find this cure.
This is every parent's worst nightmare. Children with this genetic disease are born healthy with no reason to believe they don't have a full and happy life ahead. Most children are diagnosed between the ages of 2 and 6 years old. Vanishing White Matter Disease (VWM) is an extremely rare, degenerative and terminal brain disease that depending on the severity of each case, will take away the child's ability to do everything. Patients will lose the ability to walk, talk, eat, see, hear, it causes mental retardation, spasticity, seizures and coma, resulting in death often before reaching teenage years.
VWM Disease is a condition that destroys myelin, the brain's white matter, in doing so it permanently affects transmission of brain signals to the rest of the body.
This is a disease that doesn't allow children to be children. A bump to the head, a high temperature, cold/flu, stress or fright, could kill them. This means they can't go outside in the sun on a warm day, play ball at the park or go near anyone with a head cold/flu.
But there is hope!
There is hope for Chloe and over one hundred children like her worldwide. Doctors are working on a cure with promising research taking place to stop the disease in its tracks. The problem however, is funding. With only 7 known cases in Australia and 172 cases worldwide, pharmaceutical companies don't see it as commercially viable and it is therefore left up to the families affected to raise the funds to save our children.
Professor Orna Elroy-Stein from the Department of Cell Research and Immunology at Tel Aviv University (a world leader in the study of brain science and neurodegenerative diseases) has had some encouraging breakthroughs in her research recently. Her small team are testing FDA approved compounds with some positive results; however, expanding the project to speed up progress will come at a cost of approximately AUD$2.6 million with the aim of bringing clinical trials forward to save children living with VWM disease.
Goal 1: $840k to fund the purchase of a specialised Confocal Microscope
Goal 2: $600k to fund additional research assistant's salary's and a Flourescence Activated Cell Sorter
Goal 3:- $290k to fund the purchase of live cell imaging and MRI analysis equipment
Goal 4:- $870k for the outsourcing program to facilitate initial characterization of the drug-like molecule potential up to pre-clinical stage.
TOTAL = $2.6 million
And we are in a race against time. The life expectancy is typically only between five and ten years from onset of the disease.
This cure is going to come, please help us find it in time to save Chloe & other children now
Come on this journey with us; let's stop this disease so the next time parents are told this soul destroying news there is a treatment available! This can only happen with your help. We really hope you will assist us in raising these life saving funds, every dollar counts - and all funds raised will go towards researching the cure.
Start your own fundraiser for VWM
Another way to support this lifesaving research is to host your own fundraiser on this charity page. To get started click on CHALLENGE under the Fundraise tab to the right.
Together we can do this.
Determined, hopeful and eternally grateful
Team Saving Chloe Saxby
