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Josie's Journey

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

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Showing posts from August, 2023

WE MOVED THIS BLOG TO A NEW HOME

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August 03, 2023

Josie's Journey continues at her new home www.JoyfullyJosie.love/blog !

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Theme images by Michael Elkan

Nicole Zeitzer Johnson: I'm the mom of Josie and big brother Tanner. I’ve been keeping this blog to chronicle Josie's journey with a rare genetic disorder called FOXG1 Syndrome. I was told in 2014 that Josie will never walk or talk or take care of her basic needs and will have seizures and medical complications. I aim to change this. In 2017, I co-founded the FOXG1 Research Foundation and we are driving the science to find a cure for FOXG1 Syndrome. I have a strong feeling that this will Josie's story to tell one day. I moved this blog over to my children’s book website www.JoyfullyJosie.com - I also started an education program to spread disabilities inclusion across schools and foster empathy. www.livejoyfullyeducation.com Josie is so loved and as far as I'm concerned, just like her brother, she is perfect, but she deserves more. All children with FOXG1 syndrome and countless rare diseases do too. Side note: I'm also a huge music lover and I'll probably add a music reference in each post. Thank you for reading about and coming along Josie's journey.

Live Joyfully Education

Live Joyfully Education professional development for educators and resources for students focused on disabilities inclusion, empathy and social emotional leaning

Joyfully Josie Childrens Book!

Joyfully Josie Teaches Children About Disabilities & Inclusion!

FOXG1 Research Foundation

Driving Science to Cure FOXG1 Syndrome

Donate to a Cure

Archive

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2023 2
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  - WE MOVED THIS BLOG TO A NEW HOME
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Labels

Chan Zuckerberg Initiative
cortical vision impairment
cure foxg1
CVI
developmental delays
Dr. Christine Roman-Lantzy
dr. palevsky
epilepsy
foxg1
foxg1 awareness

foxg1 josie
foxg1 research foundation
FOXG1 syndrome
gemmotherapy
goose
hbot
hyperbarics oxygen therapy
interpol
music
Nasha Fitter
rare disease
special needs parenting
special needs parents
special needs school
vaccines
vision therapy

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Josie 6 years old

This is 6. Josie's birthday celebration at school

Josie at 5 years old

with her big brother

Josie 4 years old

Josie 3 years old

Josie 2 years old!

Baby doll loves her baby doll

Josie 15 months

Jojo Beanie

Josie at 9 months old

Sibling love

Josie and big brother Tanner

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