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, 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.
Nasha, Nicole, and Christine were all told their child 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.
So in California, Nasha and her Stanford genetic counselor, Ellie Brimble, started digging and uncovering reports from scientists around the world who had been studying the FOXG1 gene. You see, scientists are eager to study FOXG1 because many have discovered that since FOXG1 is one of the first and most critical genes in brain development, it “turns on” other genes and proteins, and leads to answers about many other brain disorders like autism, schizophrenia, alzheimer's, brain cancer, 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 New York, Nicole, a former CNN producer, communications professional, and entrepreneur, joined the board of an existing FOXG1 foundation and started to build awareness. While she knew the organization was wonderful for parent support, she also knew that something more had to happen to really drive research in line with the speed of genetic science.
Meanwhile, in Switzerland, Christine Revkin took it upon herself to launch the first cutting-edge genetic research for FOXG1. Christine found the renowned BLACKSWAN Foundation in Switzerland, which has been focused on research for orphan and rare diseases for ten years, and together they raised the money and funded a scientist in Italy to begin CRISPR research for FOXG1.
One day Nasha called Nicole and they 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 FOX kids, their siblings, their lives.
In that conversation they both experienced a tremendous relief and a realization that they were put on the earth to make a real difference. Nasha joined the board of the existing FOXG1 foundation along with Nicole, but after a few months it was clear that, in the competitive and fast-moving landscape of genetic research, their journey required them to forge their own path and start a solely research-dedicated foundation.
In walks Christine and the BLACKSWAN Foundation.
Over Labor Day weekend 2017, Christine convinced the BLACKSWAN Foundation to take the three women under their wing and form a special project group. And so, the FOXG1 Research group was conceived. They had a global, research-driven foundation overnight. A handful of FOXG1 parents from England, Germany, and France agreed to help. Ellie Brimble joined as the genetics liaison. They put together a strong Scientific Advisory Board comprised of the world's leading neurologists, geneticists, scientists, Biotech CEOs, and more to guide them and help them vet the research proposals, which started pouring in from the most esteemed scientists in the world.
The foundation has taken off like a rocket launched into space. A tremendous outpouring of support and incredible donations helped the FOXG1 Research group raise its first million dollars in just four months! In this short amount of time, FOXG1 Research was already within the top 1% of patient advocacy groups vying for biotech investment, like RETT Syndrome Research Trust, Grace Wilsey Foundation, and CureDuchenne.
A sisterhood was born. 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. They inspire each other with texts and emails with quotes from people like, Theodore Roosevelt about the (wo)man “who is actually in the arena, whose face is marred by dust” and Abraham Hicks “We don’t grow when things are easy, we grow when we face challenges.”
And much more than a sisterhood, the FOXG1 Research group with the BLACKSWAN Foundation has created a global family of FOXG1 parents dedicated to finding a cure for their children and all children with FOXG1 Syndrome, and perhaps even for brain disorders at large. Nothing is impossible.