Nicole Johnson

Nicole Zeitzer Johnson is Co-Founder and Executive Director of the FOXG1 Research Foundation, a parent-led nonprofit known for pioneering an independent path to rare disease drug development. After her daughter, Josie, was diagnosed with FOXG1 syndrome, a rare and severe neurological disorder, Nicole co-founded the foundation in 2017 to create a path forward where none existed. In nine years, they have taken FOXG1 syndrome from scientific research through multi-site clinical trials of the foundation's own gene therapy toward an approved treatment, at a fraction of the cost of traditional drug development. Nicole is also the author of Joyfully Josie, a children's book that teaches about disabilities and inclusion.