RARE MAMAS RISING- EPISODE 019

A Big Reason to Be Here with FOXG1 Research Foundation Co-Founder, Executive Director, and Rare Mama- Nicole Johnson

Nicole Johnson is the co-founder of the FOXG1 Research Foundation and mother to Josie, who has a severe mutation of the FOXG1 gene. The FOXG1 Research Foundation is not only accelerating research to cure FOXG1 Syndrome and brain disorders but also driving change in the rare disease landscape. Bringing more than two decades of experience in media and communications, Nicole currently serves as FOXG1 Research Foundation's Executive Director overseeing every vertical across the organization. In this episode, Nicole's strength of purpose blazes bright, and she speaks with firsthand knowledge about the powerful combination of science and hope. She's a 2022 Global Genes Champion of Hope Award nominee, and she believes we are all here for a really big reason. After listening to this hope-inducing conversation, you're sure to understand why!

EPISODE HIGHLIGHTS

• The journey to a FOXG1 diagnosis for Nicole's daughter Josie
• How Nicole co-founded the FOXG1 Research Foundation and the work she's doing as the Executive Director
• The progress the FOXG1 Research Foundation has made, and its impact on the way natural history studies are conducted
• Why we are living in a "science renaissance"
• Nicole's concept of "Happiness Hacks" to keep from living inside the gloom

LINKS & RESOURCES MENTIONED

FOXG1 Research Foundation

www.foxg1research.org

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

Nicole Johnson

Meet Nicole & Josie: https://youtu.be/NRT7lVuBTJ4

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

Email: [email protected]

Global Genes

https://globalgenes.org/

CONNECT WITH NIKKI

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]