In September of 2017 a group of parents from across the globe got on a Skype call that would change the course of their lives with a new purpose.

These parents were connected by the same heartbreaking diagnosis that their child was born with the severe, neurological, genetic condition called FOXG1 syndrome. They were told their child would most likely never walk, talk, or take care of his or her basic needs. They were told their kids would suffer from seizures and might need a feeding tube. 

These parents decided to change this prognosis. 

There was very little known about FOXG1 syndrome at that time and there was no concerted research effort underway and in this age of exponential advances in genetic science, they knew that they had to take action.  

That Skype call was the birth of a global organization that is leading the research to find a cure for FOXG1 syndrome. 

They soon learned that their work could have an impact far greater than they ever imagined because FOXG1 is one of the first and most critical genes in brain development. Formerly called Brain Factor 1, it’s a transcription factor that “turns on” proteins needed for other genes to work properly. Neuroscientists believe that understanding Foxg1 could help solve many brain disorders affecting millions of people, including autism, schizophrenia, Alzheimer’s, brain cancers, and more.

With a Scientific Advisory Board composed of leading neurologists, geneticists, clinicians, scientists, and BioPharma executives guiding them, the FOXG1 Research Foundation took off at exponential speed with a clear, strategic Path to a Cure.

Through the funded Research Projects, the FOXG1 Research Foundation has developed the models to understand the Foxg1 gene at a biological and cellular level. FRF has assembled a top-tier Scientific Team to develop translational science including gene therapies; antisense therapies, small molecule therapies, and emerging therapies that could help correct the FOXG1 mutation.

To accelerate the road to clinical trials, the FOXG1 Research Foundation has launched the FOXG1 Patient Data Center which includes the Patient Registry and the new machine-learning digital Natural History Study, supported by the Chan Zuckerberg Initiative. FRF also built a Patient Stem Cell Biobank , and also hosts the FOXG1 Science Symposium for researchers and Industry to share work and collaborate on ideas to move science forward. 

The FOXG1 Research Foundation is a global family of FOXG1 parents dedicated to finding a cure for all children and adults with FOXG1 syndrome, and perhaps even for brain disorders at large. 

Co-founder Nicole Johnsons says, “We are motivated by every child, the incredible breakthroughs in science, the strength of our community, and the belief that nothing is impossible.”