Blog | Joyfully Josie

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Josie's Journey

Through her mama's voice, along the road to find a cure for FOXG1 syndrome

Nicole

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

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

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

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...

Nicole

Josie Graduates from the Hagedorn Little Village School!

Movin' on up! Josie graduated from elementary school today. It might have been the cutest graduation ceremony in the history of...

Nicole

Joyfully Josie Now Available on Amazon and More Major Retailers!

I have some pretty big news. I can add 'children's book writer' to my LinkedIn profile. Yup, I wrote a children’s book. I plan for it to...

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