It Takes a Gaggle. A Mama’s Mission to Save her Child
By Guest Writer: Nicole Johnson, Co-Founder of The FOXG1 Research Foundation

You never know who is dancing right beside you at a show. We feel the energy and shared love of the music surrounding us, but do you ever wonder what’s her story, or his story? We all have one. When I’m dancing in my zone, often next to “Scarf Guy,” under the Goedde lights, everything feels right. In the moment, and in every moment I know my purpose here, as this earthling, is quite a story. Hi, I’m Josie’s mom.

Josie was born with a rare, devastating disease called FOXG1 syndrome. She is nine-and-a-half years-old and she can’t walk, or talk, or even sit up without falling over. She can’t dance, but man, does she want to. She is fed through a tube, but the worst part is that she suffers from life-threatening seizures. When they happen it’s like a monster takes over. She can be laughing her most precious infectious belly laugh one moment, and in a flash she can be unresponsive, just stuck and blue. These are heart-crushing moments.

Like any Mother Goose would do, I’ve decided to work my ass off to find a cure for Josie and for every child in the world with FOXG1 syndrome. I started the FOXG1 Research Foundation in 2017 and we’ve assembled a team of the world's most brilliant scientists to fix this broken gene - and let her dance again, let her live so free. Yes, I just channeled Mr. Mister.

We’re living in a mind-blowing age of scientific breakthroughs and we (The FOXG1 Research Foundation) have several promising projects underway - including gene therapy, Crispr, drug re-purposing, RNA therapy and more. Trust me, I don’t have a science background, I was actually in the music business before this, but a mama’s gonna learn what a mama needs to know. With support from my family, friends, and my community, I know that nothing is impossible. We are here to change the face of a horrible disease and that makes life pretty damn exciting. It takes a village - or a gaggle, rather.

Josie is the embodiment of pure love and joy. She gives the gift of perspective to everyone who knows her. I am truly blessed. And while she is perfect to me, she deserves so much more. Josie lights up when she hears Goose, she especially loves Rick’s guitar solos. My dream (my goal) is that she will be on the dance floor with us all one day. I always say this will be Josie’s story to tell one day. And I’m sticking to it.

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Pictured Above: Josie & her Mom Nicole
(Used with permission)


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