Kush’s FoxG1 story and the launch of the foundation was first announced publically in Nov 2015 as part of the FoxG1 Awareness Month.
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.
Kushagra “Kush” Singha has been an unintentional trailblazer for the FoxG1 syndrome community in Sydney.
The Glenwood two-year-old was diagnosed with the rare genetic condition in March 2015 after 18 months and more than 75 medical tests.
His father, Vivek Singha, said Kush was found to have the c. 946 del mutation that had not been reported in any medical database or literature. The disease impairs brain development, movement and speech. “At first, it was very isolating for my wife and I because we had no one to speak with who could understand the situation,” Mr Singha said.
When 18-month-old Kushagra Singha was diagnosed with the rare FoxG1 syndrome his parents Vivek and Monika felt like no one understood their situation. Their son was the first child in Sydney to be diagnosed with the rare genetic condition – characterized by impaired development and structural brain abnormalities – and initial Google searches confused and scared them. Eventually Vivek decided to call UNSW Medicine’s Dr Fabien Delerue, whose name and phone number he found online. And it was this phone call that started the journey of a small research team – that also includes Head of the Dementia Research Unit Professor Lars Ittner and PhD candidate Daniel Tan – dedicated to doing everything they can to help.
In 2018, as a result of the collaboration between the researchers it was identified that a vector delivery mechanism will be crucial in delivering the therapy. Foxg1 Foundation launched a research project at CMRI. Below is what they shared:
The family of a young boy who suffers from a rare genetic condition has taken the extraordinary step of raising enough money, with the support of Rotary, to fund a PhD student who will work on finding treatments and a possible cure for the disease.
Monika and Vivek Singha from the FoxG1 Foundation, along with Hills Kellyville Rotary and the Australian Rotary Health, held a presentation at Children’s Medical Research Institute at Westmead this week, to hand over a cheque to fund the work of PhD student, Jason Ward.
The dementia research unit at UNSW led by Dr Lars Ittner, moved across to Macquarie University and grew into the Dementia research Centre. With Dr Lars Ittner now heading a research establishment of over 40 research and support staff, FoxG1 foundation relaunched the Research project at Macquarie University now.
With a larger research team, access to a Research Hospital and increased resources to gene therapy research, this transfer of research from UNSW to Macquarie holds great promise for a breakthrough in research to a cure for FoxG1.