The passion of parents can move mountains. 

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. In this age of 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 quickly 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, FOXG1 is a transcription factor gene 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 an esteemed 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 deeply understand the FOXG1 gene at a biological and cellular level. FRF has assembled a top-tier science team to drive promising 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 launched the innovative FOXG1 Patient Data Center, which includes the FOXG1 Patient Registry and the digital Natural History Study, which the FRF pioneered, supported by the Chan Zuckerberg Initiative. FRF also built a FOXG1 Patient Stem Cell Biobank, and also hosts FOXG1 Science Symposiums for researchers and Industry to share work and collaborate on ideas to move science forward. 

Along with the science, the FRF is dedicated to supporting parents and families along the rare disease medical caregiver journey, with a host of support groups and webinars, resources, and more. Just one example of the essence of a strong global community foundation was illustrated when the foundation helped rescue a FOXG1 family to safety during the Ukraine conflict.

The FOXG1 Research Foundation is a global team led by FOXG1 parents dedicated to finding a cure for all children and adults with FOXG1 syndrome, while helping to improve the landscape for rare diseases and perhaps even solve major brain disorders, including Autism. 

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