Welcome to my FOXG1 fundraising page!
This cause is deeply personal. I’m fundraising in honor of My FOXG1 Child, and for all of the incredible children around the world living with this condition.
The FOXG1 Research Foundation is a parent-led nonprofit driving a historic effort to bring the first-ever treatment for FOXG1 syndrome - a potentially life-changing gene therapy - to children around the world.
Here’s how you can join the race:
Donate: Every dollar helps! Every contribution, whether through direct financial support, sharing her story, or sending encouragement, gives Alexis the tools to connect, communicate, and thrive.
Share: Spread the word by sharing this page!
Start a Team : Create your own page and join the end-of-year race toward $500K!
What Matters:
After a 17-year diagnostic journey, Alexis finally received her official diagnosis of FOXG1 syndrome. Reaching this milestone brings answers, clarity, and a strong sense of direction for the road ahead.
Alexis is nonverbal, but her determination and presence speak volumes. As she steps into this new chapter with her family and care team, her primary focus is on expanding her world through targeted therapies and adaptive support.
Current Goals & Focus Areas
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Communication: Exploring dedicated Augmentative and Alternative Communication (AAC) methods, eye-gaze technology, and multimodal systems to unlock new ways for Alexis to express her needs, preferences, and personality.
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Vision Development: Working with cortical visual impairment (CVI) specialists and visual therapy techniques to strengthen her functional vision and visual engagement with her environment.
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Community & Advocacy: Connecting with the global FOXG1 community, participating in specialized therapies, and celebrating every step toward greater independence and connection.
Thank you for being part of this incredible movement!