FOXG1 Syndrome is a neurological disorder caused by a mutation in the FOXG1 gene, similar to RETT Syndrome. Previously called Brain Factor 1, FOXG1 is one of the first and most essential genes formed during human development. FOXG1 builds the Cerebrum – which controls cognition. Affected patients in most cases, cannot sit, walk, talk and eat without a feeding tube. 87% are epileptic and pharma-resistant.
Research shows FOXG1 plays a role in Autism, Schizophrenia, Brain Cancer and Epilepsy. A cure for FOXG1 will not just help over 300 (known cases) but will help solve brain disorders that impact millions of people.
The FOXG1 Project Group under the BLACKSWAN Foundation’s mission is to:
Nasha Fitter is the parent of an afflicted FOXG1 child and manages our research strategy and grant process for scientists. Nasha is a technology entrepreneur; founder and CEO of tech startup Schoolie, which was acquired in 2016 by GreatSchools. Previously, she was a Director at Microsoft Corp where she held various management and product development positions. Nasha also started and sold a company in Mumbai, India and was an investment banker on Wall Street. Nasha has an MBA from The Harvard Business School.
Elli Brimble serves as FOXG1 Research’s Scientific Advisory Board Liaison to facilitate communication with research communities. She is a genetic counselor in Child Neurology at Stanford Children’s Health, where she is working to develop a FOXG1 multidisciplinary clinic. Elli completed her undergraduate training in genetics at Western University in Ontario, and Masters degrees in molecular genetics and genetic counseling at the University of Toronto and Boston University, respectively. Elli’s primary clinical and research interests are to improve understanding of genetic mechanisms that contribute to epilepsy, and to develop protocols that ensure comprehensive and consistent evaluations for genetic epileptic encephalopathies.
Nicole Johnson is the parent of an afflicted FOXG1 child and directs our Communications strategy and outreach. She is a founding partner and the Director of Communications of the streaming music service, Qello Concerts (think the Netflix of concerts). Prior to starting Qello in 2010, Nicole worked many years as a producer for CNN and NBC, and then moved into corporate communications and PR for several Fortune 500 companies. She has a Bachelors of Science in Mass Communication form Towson University in Maryland.
Christine Revkin is the parent of an afflicted FOXG1 child. She founded the FOXG1 Research initiative and project manages it. Christine has worked in Communications (with a Digital focus), Event Management, Business Analysis, Trade Marketing, Project Management & PMO as well as product introductions to EMEA markets for Sales & Marketing organisations. Christine has a strong background in volunteer work with Telethon, Nez Rouge, WWF and children summer camps.