Enjoy a sausage and help raise awareness and funds for the rare genetic condition FoxG1

Glenwood mother of four Monika Manhas, has organised two fundraising barbecue’s with the help of Bunnings Rouse Hill and Blacktown in a bid to raise awareness and vital funds for the rare genetic condition FoxG1.

Vivek and Monika Singha are looking to raise awareness and raise money for a cure for FoxG1 syndrome.Their son, Kush has been diagnosed with the rare condition.Monika and Vivek Singha with Pranav, Jayan, Harshi and Kush.

Glenwood mother of four Monika Manhas, has organised two fundraising barbecue’s with the help of Bunnings Rouse Hill and Blacktown in a bid to raise awareness and vital funds for the rare genetic condition FoxG1.

Monika and husband Vivek Singha, son Kushagra, 3, was the first child in Sydney diagnosed with the FoxG1 condition.

“Kushagra is profoundly delayed and is unable to sit, walk, eat or talk by himself and needs 24/7 support with all activities,’’ Mrs Manhas said.

However, the couple, who also have three other children, have a strong hope that a cure for the condition, which is caused due to a deletion in a single gene can be found, with gene therapy.

“FoxG1 Foundation has already set up a research scholarship for furthering the cure for the condition at UNSW,’’ Mr Singha said.

“The research scholarship at UNSW costs about $105,000 and while the first year’s scholarship has already been raised, funds still need to be raised for the second and third year.”

Vivek and Monika Singha are hosting a barbecue to help raise awareness and vital funds for FoxG1 syndrome.Their son, Kush has been diagnosed with the rare condition.

The FoxG1 Foundation will be hosting a barbecue at Rouse Hill Bunnings, Annangrove Rd, Rouse Hill on Sunday and another barbecue at Blacktown Bunnings on Tuesday.

“Every little bit helps and together we can find a cure,’’ Mrs Manhas said.

For donations please call Mrs Mnahas on 0433 806 830.