Isabella Coulstock Performs “Who I Am” Live in Paris

Apr 1

It was the most magical night in Paris — and it ended with a surprise no one in that room will forget.

The evening was called "Soirée Lyrique pour FOXG1" or "An Evening of Music for FOXG1," hosted by Virginie Bontoux-Halley of Fondation Thot and member of the FOXG1 Research Foundation Philanthropy Board. The purpose was to introduce our story to new supporters — the story of parents leading a new movement to bring treatments to children against all odds.

The room was filled with FOXG1 families who had traveled from around the world, alongside new supporters hearing our parent-led foundation story for the very first time. The evening opened with an inspiring presentation from our co-founder Nicole Johnson, followed by stunning opera performances.

And then Isabella Coulstock took the stage.

Isabella is a British recording artist who has toured with The Who. But she wasn't there to perform a song from her catalog. She was there to perform a song she wrote for Josie.

In 2024, Isabella heard Nicole speak at an event in New York — about her daughter Josie, about the diagnosis, about her work to drive a gene therapy through patient clinical trials. Isabella was deeply moved. She went home and wrote a song from Josie's perspective, called Who I Am.

"After meeting Nicole and hearing her story I was truly inspired, so I wrote this from Josie to her beautiful mum and the whole world around her."
— Isabella Coulstock

She recorded Who I Am in New York with Black Square, the band led by Declan Kelly, CEO of Consello Group and a member of the FOXG1 Research Foundation Philanthropy Board — an intimate studio session that became a gift. For Nicole and Josie. For all FOXG1 families. For everyone who faces challenges and wants the world to know — I am confident. I am strong. I am exactly who I am supposed to be.

This night in Paris was the first time Isabella had ever performed it live.

As her gorgeous voice filled the room, everything went still.

The FOXG1 families who had traveled from around the world — who live every day inside the reality this song describes — felt it as recognition. For the newer supporters in the room, it opened a door of deep understanding.

"I am who I am, I'm right here where I'm supposed to be,
happy to understand that you ain't quite like me.
I've got a big heart, a smile that takes your hand."

A video played while Isabella sang, showing a montage of Josie's life — illustrating the happiness and the hard times, and the big heart that takes her mommy's hand.

Many in the room were in tears. All of them reminded, in the span of a few minutes, of exactly why this work matters and who it is for.

It is for every FOXG1 child. It is for the nearly 200 million children with rare diseases around the world who deserve to be seen for who they are.

Now, thanks to Isabella, those words exist — recorded, performed, and heard — as a permanent testament to who they are.

Thank you to Isabella Coulstock for this extraordinary gift to our community. Thank you to Declan Kelly and Black Square for bringing it to life in the studio. And thank you to Virginie and Fondation Thot for creating an evening where a moment like this could happen.