FOXG1 UK was formed by three parents of children who where diagnosed with FOXG1 Syndrome in 2014. At the time there were very few cases of FOXG1 Syndrome diagnosed in the world mostly in the USA, UK and Australia. Most families meet through a Facebook support group to share experiences. We are the experts on FOXG1 Syndrome. We live with the symptoms and challenges that it brings. There is no guide book for being a parent of a child with a rare syndrome and the chances are if you speak to a doctor about it they have never heard of it.
Thankfully there are a handful of clinicians and scientists who are interested in FOXG1 Syndrome and in 2015 we raised enough money to fund some stem cell lines with Professor Angus Clarke at Cardiff University. These stem cell lines are now stored at the Coriell Institute in The USA and are available to scientists who are interested in studying FOXG1.
As the FOXG1 family started to grow across the world a small group of parents from across Europe and the USA met at Heathrow Airport to formulate a plan for pushing forward the research into the syndrome. We identified a group of scientists who were willing to help us with our research. The FOXG1 Research Foundation was formed. There are now charities and foundations across the world who support the families and promote research into the syndrome.
FOXG1 UK helped to fund the first world conference on FOXG1 Syndrome in November 2018. It was a privelege to attend the meeting in San Diego and meet parets from around the world. The scientists attending the meeting were very keen to learn about our children and the symtoms that they had. Despite FOXG1 being a developmental disorder consensus among scientists is that they believe it is possible to treat the syndrome and improve lives. Lasting friendships and commitments to find a solution were made at that meeting.
The FOXG1 Research Foundation have a scientific advisory panel in place and proposed projects are vetted by a group of experts in researching neurological conditions.
Last year FOXG1 UK were able to contribute £12000 to a Zebrafish Project at Professor Corinne Houart's lab at King's College in London. Zebrafish allow us to screen thousands of small molecules (potential drug treatments) quickly. All the funds we have raised have come from families and friends of those affected by FOXG1 Syndrome in the UK and we are very grateful for their continued support. The Zebrafish project however cost well over £100K and we are grateful that a donor in Switzerland has contributed most of the funding for this project.
The last year has been difficult for FOXG1 UK as family ill health, Coronavirus and high caring responsibilities have limited the amount of work we could do. In July this year we appealed for help and we now have a new larger group of parents as Trustees and are looking forward to helping the FOXG1 Community be successful in finding ways to help the families affected by the syndrome.