FOXG1 Foundation Australia’s mission is to provide hope and support to individuals with FOXG1 and their families via any means possible, to facilitate discussion and fund research within the medical community, and to bring awareness and education to the public. Our goal is to find treatments and a cure for FOXG1. We hope the Foundation will provide support and inspiration to the many families who have been blessed with a FOXG1 miracle.
Imagine if the seizures just went away? What if our children could say “Mom” or “Dad”? If they could take steps on their own or feed themselves… These are the dreams of the all hopeful of children with FOXG1. We believe that with dedicated research and funding, these dreams can be realized. This is the goal of the FOXG1 Foundation.
Why is my child missing milestones? Why doesn’t anybody have answers? Are we doing everything we can?
We have asked these questions repeatedly; whether out loud or as a quiet refrain in our head. We know what it is like to wonder if we will ever get a diagnosis, and if we do, what will it mean? When Kushagra was finally diagnosed with FOXG1 disorder, we scoured the internet and struggled to find any information that would ease the pain and provide hope for our future. We found nothing but confusing genetic papers, we felt tired and alone. Then we found the parent support US Facebook page and spoke to some of the FoxG1 parents in US and locally.
We learned about what to expect in children affected by FoxG1, things such as their struggles, behaviors, uncontrollable seizures and many other challenges. It was relieving to know that we are not alone in this and people have gone through all that what we were going through.
In June of 2015, Monika and Vivek Parents to Kush decided to setup a foundation in Australia to increase awareness, accelerate medical research and to provide support to families.
Welcome to the FOXG1 family!
Addie, Ameaneh, Connie, Fabien, Joseph, Monika, Shini and Vivek,