The legendary Kings Cross Motorcyle Club and the Surfside Motorcycle Garage in Brookvale are hosting a motorcycle show tomorrow to support the Singha family from Glenwood.
Little Kush Singha was the first child in Sydney diagnosed with the debilitating FoxG1 syndrome, a neurological condition which affects brain function.
The motorcycle show is at Surfside Motorcycle Garage at 42 Windbourne Rd, Brookvale from 11am-3pm and hopes to raise awareness and funds for the FoxG1 Foundation Australia, run by Vivek Singha.
“After speaking to leading researchers all around the world, we have now started the Foundation to find a cure for FoxG1 not only for Kush but for all children diagnosed,” Mr Singha said.
President of Kings Cross Motorcycle club Rik Johnson said: “The Kings Cross Bikers Social And Welfare Club are completely behind the FoxG1 Foundation to help find a cure.
After Meeting Vivek, Monika and the whole family and seeing little Kush unable to do anything for himself, we decided to try to make a small positive difference in this little boys life. Our club is all about helping those less fortunate and with the support of the biker community across NSW, we feel we can and will make this little guy smile.”
Vivek helping Kush take a few steps.
People affected by FoxG1 syndrome are unable to speak, sit, walk or eat by themselves.
Less than 200 people worldwide are affected by the syndrome.
Thanks to the Singha family, research is now being conducted at the University of NSW.
“We have received wonderful support from everyone and along my journey to help little Kush we found out that there were phenomenal advances in genetics and technology, especially technologies that are making gene editing faster, cheaper, quicker and more accurate and give real hope for a gene therapy cure,” Mr Singha said.