Together we will find a cure
Kimberly-Clark Australia's Finance team recently held a BBQ on site to help raise awareness surrounding FoxG1, a rare genetic condition that directly affects the son of Vivek Singha, Tax Accounting Specialist, at Kimberly-Clark.
Since his son Kush was clinically diagnosed with the rare condition in March of this year, Vivek has set up the International FoxG1 Foundation Australia for his son and children everywhere who are currently dealing with this rare condition.
To date, there are fewer than 200 children worldwide who have been diagnosed with having the FoxG1 disease. Of this, 8 have been diagnosed in Australia, and Kush is the first child to be diagnosed in Sydney. However, many children around the world are also suffering from this condition but have not yet been diagnosed.
What is FoxG1?
FoxG1 is a rare genetic condition which is profoundly debilitating. Many children are unable to walk or talk or make purposeful movements as the gene primarily affects brain development. Because of the rarity of this condition, there is very little awareness.
In-depth research studies are currently in place with the aim of having a gene replacement therapy available for children dealing with the FoxG1 disease. As this is a single gene deletion, there’s hope that a there will be a cure for children with FoxG1 in the next couple of years. However, more importantly, awareness will make their journeys much easier.
How you can help
Vivek has recently set up the International FOXG1 Foundation Australia. While the foundation is still very much in its infancy, its purpose is to drive research and improve the quality of life for children with FoxG1 and their families via donations and fundraising that will help finance critical research programs.
In helping to raise awareness surrounding this rare disease and encouraging donations, we are providing hope of finding a cure and helping families everywhere become aware of the condition.
(l-r) Viviek Singha with Shanal Epa