Nicole’s story

Nicole Johnson is the co-founder of the FOXG1 Research Foundation and the mother of 11-year Josie who suffers with a rare neurological condition, FOXG1 Syndrome. With more than two decades of experience in media and communications, Nicole serves as Executive Director overseeing every vertical across the organization. Nicole was a co-founder and Director of Communications for streaming music service, Qello Concerts, sold to Stingray in 2018. Prior, Nicole was a producer for CNN and NBC, and worked in Corporate Communications for several Fortune 500 companies.

Nicole is also the creator and author of the "Joyfully Josie" children’s book series and digital platform about disabilities and rare diseases. For more information, see her website: www.JoyfullyJosie.love.

In Nicole’s own words, “I always come back to the story … I have this vision of Josie in her dorm room one day, you know with her music posters on the wall…she's talking to her roommate, and she says you know I was born with this condition called FOXG1 Syndrome and it was really bad. And you know, my mom and a team of parents got together, and they started this work ... I don't have it anymore, and nobody does. And then they just carry on with their day. So that's my hope. And hope is too soft a word… that is my belief.”

See below for more information on FOXG1:

website:  www.foxg1research.org

What is FOXG1 syndrome: https://foxg1research.org/foxg1syndrome

Help support FOXG1 Research:  https://foxg1research.org/donate

FOXG1 Research Foundation LinkedIn: https://www.linkedin.com/company/foxg1research

Nicole Johnson LinkedIn: https://www.linkedin.com/in/nicole-johnson-foxg1/

Facebook: https://www.facebook.com/foxg1research

Instagram: https://www.instagram.com/foxg1research/

YouTube Channel: https://www.youtube.com/channel/UCYuuje7VFvEu972bXtW-qDQ