An Evening of Music for FOXG1
The evening was called Soirée Lyrique pour FOXG1 — "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 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.
Nicole's Story
The evening opened with a presentation from our co-founder and Executive Director, Nicole Johnson — translated into French by Charline Contal, Vice President of Association FOXG1 France.
For the FOXG1 families present, it was a story they know from the inside. For the newer supporters in the room — many of whom were hearing it for the first time — it landed with full force: the diagnosis, the determination, the science that now puts a gene therapy within reach of the children who need it.
The Music
After Nicole's presentation, the evening turned to the recital — five parts, featuring some of the most beautiful music in the classical repertoire, performed by extraordinary artists who donated their talent to this cause.
And Then Isabella Coulstock Took the Stage
In 2024, Isabella heard Nicole speak at an event in New York — about her daughter Josie, about the diagnosis, about the work to bring a gene therapy to first-in-human 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
This night in Paris was the first time Isabella had ever performed it live. As her 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. Many were in tears. All of them were reminded, in the span of a few minutes, of exactly why this work matters and who it is for.
This song is for every FOXG1 child. It is for the nearly 200 million children with rare diseases around the world who deserve to be heard.
Now, thanks to Isabella, those words exist as a permanent testament to who they are.
COMING SOON: The "Who I Am" Global Campaign
Paris was the first performance. It is the first of many. A global Who I Am campaign is coming — performances across countries, a shared message, and an invitation for the whole world to stand with every child with FOXG1 and every child without the verbal ability to tell the world who they truly are.
Stay tuned.
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.
Join the Mission
Every contribution brings the first FOXG1 gene therapy closer to the children who need it most.
