A version of this story first appeared in the CNBC Cures newsletter. Click here to sign up.
When Nasha Fitter’s youngest daughter was diagnosed with FOXG1 syndrome in 2017, a rare genetic neurodevelopmental disorder, she faced a challenge that many in the rare disease community know unfortunately too well: little to no public information about the disease or how to navigate it.
“There was really nothing being done,” Fitter said. “Just getting day-to-day answers to my questions and the issues I was facing was really unsystematic and random … it was basically going to Facebook and hoping someone would answer my question.”
Fitter was told at that time that there was no treatment for the syndrome, no research that was underway, and no real roadmap for what might come next for her daughter. To tackle that head on, she co-founded the FOXG1 Research Foundation to work towards a cure.
But Fitter, a technology entrepreneur, also saw an opportunity to advance how rare disease patients receive care that could also accelerate finding cures.
