About FOXG1 UK
FOXG1 UK was established as a UK charity in April 2026 by parents and carers of children and adults living with FOXG1 syndrome. We know first-hand how life-changing a FOXG1 diagnosis can be.
For many families, the diagnosis comes after months or even years of uncertainty, appointments and unanswered questions. Then, suddenly, you have a name for your child’s condition — but often very few answers about what that means for their future.
We remember what those early days can feel like. The fear. The confusion. The endless searching for information. The worry about what lies ahead.
A charity created by families, for families
And we know that the challenges don’t end with diagnosis. Caring for someone with FOXG1 syndrome can be demanding, both physically and emotionally. There are therapies, hospital appointments, medications, equipment, communication difficulties, feeding and sleep challenges, and countless things that other families may never have to think about.
But there is another side to life with FOXG1 too.
There is the joy. The laughter. The smiles and little moments that mean everything. There are achievements that may look small to the outside world but are enormous to a FOXG1 family. There are unique personalities, beautiful connections and a community of families who understand one another in a way that few others can.
Why FOXG1 UK exists
We believe that no family should have to navigate FOXG1 syndrome alone.
FOXG1 UK exists to provide families with reliable information, connection and support, while raising awareness and helping to drive research towards better treatments and, ultimately, a cure.
We want to make sure that families have somewhere to turn — whether they have just received a diagnosis, have been living with FOXG1 for many years, or simply need someone who understands.
We also want to give FOXG1 a stronger voice in the UK. By bringing families, healthcare professionals, researchers and supporters together, we can help increase understanding of this rare condition and make sure the needs of our children and adults are heard.
We are parents and families first
We are not simply an organisation that works for FOXG1 families. We are FOXG1 families.
We understand the uncertainty because we have lived it. We understand the daily demands because they are part of our own lives. And we understand the hope that comes from seeing research move forward and knowing that the future may be different for the next generation of children.
Our vision is simple:
No family affected by FOXG1 syndrome should ever feel alone.
We are here to share what we have learned, listen when things are difficult, celebrate the good days, support one another through the hard ones, and work together towards a brighter future for every person living with FOXG1 syndrome.
This is our community. This is our family.
And together, we can make a difference.