Nicole
Our FOXG1 Research Center Ribbon Cutting Ceremony! Here's to Hope & Love!
The FOXG1 Research Foundation and the University at Buffalo celebrate the opening Ceremony of the FOXG1 Research Center
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Josie's Journey
Through her mama's voice, along the road to find a cure for FOXG1 syndrome
Nicole
Jul 153 min read
An Uplifting Night of Music with Mihali to Benefit the FOXG1 Research Foundation
Mihali brings his Uplifted Tour to my home town to benefit the FOXG1 Research Foundation! Article in Port Washington Living Magazine inside
Nicole
Feb 174 min read
Love Through the Eyes of a Rare Disease Medical Mama : A Valentine’s Trip to Cohen's Children's Hospital PICU
Valentine's Day is in the air and the song in my head is, “why does love have to be so sad?” by Derek and the Dominos. As any parent can...
Nicole
Oct 30, 20233 min read
Team Josie's Race to a Cure: You are a circle of good in the world
Since I cofounded the FOXG1 Research Foundation in 2017, "Team Josie" has helped us achieve incredible things. We started with nothing,...
Nicole
Oct 5, 20233 min read
Visiting the FOXG1 Lab at the University at Buffalo: A FOXG1 Family Affair!
When we got Josie’s FOXG1 syndrome diagnosis in 2014 there were fewer than 100 people in the world known with this condition and there...
Nicole
Aug 17, 20234 min read
A FOXG1 Boy Shows Us That Josie Can Read - and maybe write!
After nearly 12 years, I was finally shown how Josie could communicate with us - by a boy who also has FOXG1 syndrome. I’m about to tell...
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