Three moms living across the globe…
Nasha Fitter in California, Nicole Johnson in New York, and Christine Revkin in Switzerland, each experienced the same life-changing, heartbreaking event that inevitably brought them together.
Their children, Amara, Josie, and Nathanaël, were not meeting simple milestones. What was happening? They endured MRIs, EEGs, and test after test after test, months and years spent trying to find a diagnosis. Finally, they each learned their child was born with a rare, severe genetic condition called Foxg1 syndrome.
They were all told their children would be intellectually disabled, they would probably never walk, talk, sit up unassisted, eat without a feeding tube, and were likely to suffer from seizures and undergo many operations.
These three moms refused to accept the prognosis without doing something about it. The questions came pouring in: what is being done about this? Are there scientists researching this gene? Are there trials in the works? What is known?
The answer was - not much. There was very little known about Foxg1 syndrome and in the age of exponential advances in genetic research, they all knew that someone had to take action.
In California, Nasha and her Stanford genetic counselor, Elli Brimble, started digging and uncovering reports from any scientists around the world who had been studying the Foxg1 gene.
In New York, Nicole was learning more about Foxg1 from her daughter’s neurologist at NYU, while starting to raise awareness about the disorder.
In Switzerland, Christine took it upon herself to launch the first cutting-edge genetic CRISPR research for Foxg1.
The three women learned something incredible - that this very rare disorder that is devastating their worlds has tremendous potential to make an impact for many brain disorders. They learned that leading scientists are eager to study Foxg1 syndrome because Foxg1 is one of the first and most critical genes in brain development. It’s a transcription factor that “turns on” proteins needed for many other genes. Neuroscientists believe that understanding Foxg1 could lead to answers about autism, schizophrenia, Alzheimer’s, brain cancers, and more.
Nasha started speaking to a biotech CEO about the road to clinical trials and, with her Harvard Business School degree and entrepreneurial experience guiding her, a concrete plan started to form.
In their first phone call, Nicole and Nasha spoke for hours, about the incredible potential of Foxg1 to lead to answers for so many other conditions, about the advances in genetic research, about the thousands of rare disorders diagnosed all the time, about the strategy to get to clinical trials in a very competitive space, about their Foxg1 kids, their siblings, their lives. They knew that they were put on the earth to make a real difference.
In September of 2017, along with the support of the world-renowned BLACKSWAN Foundation, the FOXG1 Research group was conceived. A team of Foxg1 parents from Europe joined right from the start. The BLACKSWAN Foundation allowed them to launch a global, research-driven foundation overnight with a tax-exepmtion fiscal sponsor.
In 2018, they secured U.S. 501(c)(3) status and officially launched the FOXG1 Research Foundation.
With a Scientific Advisory Board comprised of the world's leading neurologists, geneticists, scientists, Biotech CEOs, guiding them, FOXG1 Research has taken off like a rocket launched into space. A tremendous outpouring of support and incredible donations helped them raise their first million dollars in just four months and kick off critical research projects.
Nasha, Nicole, and Christine share more than the rare experience of parenting a disabled, medically fragile child, while working their real jobs, and fighting to find a cure. They all three share a deep belief that they were meant to meet.
The FOXG1 Research Foundation has created a global family of Foxg1 parents dedicated to finding a cure for all children with Foxg1 syndrome, and perhaps even for brain disorders at large. Nothing is impossible.