Global Leadership Meeting Recap

The idea was born in 2018 at the first FOXG1 Science Symposium in San Diego. The vision was clear: a truly global organization with affiliate chapters working toward the same goal, under one recognized brand and one shared mission. Eight years later, leaders from 14 countries across four continents came to Paris for our first-ever FOXG1 Global Leadership Meeting.

It was historic — and the people in that room made it so.

For the first time, affiliate chapter leaders from around the world were together in the same room — not on a screen, not separated by time zones, but truly together: France, Italy, Germany, Hungary, Poland, Spain, Sweden, Switzerland, Japan, China, Taiwan, and Chile.

“It really came to fruition. The connection among parents who share the same experience — and it is not an easy experience — was so powerful. But we all share the same ethos: this is not just about our children. This is about all the children in the world with FOXG1. We do not have to feel alone in our countries. We are all pushing together, using our global muscle to move this huge boulder uphill. It was such a beautiful day. We learned so much from each country, and we really discussed how we could advance more efficiently and move forward together.”
— Nicole Johnson

What We Came Together to Do

Nicole opened the day by welcoming the leaders and sharing how meaningful it was to be together not only with fellow parents, but with like-minded leaders. She then presented the FRF journey — from zero to a gene therapy now cleared to begin first-in-human clinical trials.

Next, our Chief Drug Development Officer, Dr. Gai Ayalon, delivered the most anticipated presentation of the day: an update on the gene therapy program and a discussion around access for countries outside the United States. Gai answered many questions and offered clear, detailed insight into the journey, the strategy, the path forward, the regulatory landscape, and what it will take to bring treatments to children wherever they live.

In an unexpected moment, the room experienced real-time feedback from the FDA. Gai shared an email that came in during the meeting with positive, forward-moving news about the Foundation’s upcoming Type D meeting.

“This means we can now share the clinical trial protocol with the EMA (European Medicines Agency) and other international regulatory agencies,” Gai shared.

For parents who have spent years carrying impossibly hard lives with very little hope, that moment landed with full force — because the idea of a real treatment once felt like nothing more than a dream.

Each country leader then presented their story, their chapter’s work, the families they have connected, and the challenges they are navigating. Before each presentation, Nicole presented each leader with a special FOXG1 Research Foundation pin featuring the organization’s DNA helix logo.

Italy’s Surprise

Thank you to every donor in Italy who has joined our global mission!

One of the most moving moments of the weekend came from our Italian affiliate: a surprise $100,000 donation raised in a remarkably short amount of time, genuinely moving us closer to bringing this treatment to children worldwide. 

The Theme: Gratitude

Throughout the day, the leaders kept returning to the same thing: gratitude. For the Foundation— For Nicole, Nasha, Ryan, Soo, Jae, Elli, Tom, Gai, and his team. 

The appreciation moved in every direction — parents grateful for the science that has advanced so quickly, for the connected community, and for the leaders beside them doing the same hard work in their own corners of the world. 

When asked what the day meant, Nicole said: “It was an extremely humbling, moving moment — to really feel the gratitude from parents around the world. Sometimes we have to stop, take a deep breath, and realize that the persistence, the refusal to take no for an answer on behalf of all of us, is seen and appreciated. These are parents just like me — and what struck me is that they know they could be in any rare disease community with no progress. But here, there is remarkable progress. We are all in this together, and that means everything.”

A Full Weekend

The meeting was only part of it. Our affiliate chapter in France, hosted the entire weekend — from helping organize the Evening of Music the previous night, to arranging accommodations for global leaders, to a lovely lunch, and then a magical dinner boat ride along the Seine.

Dinner on the Seine — an unforgettable boat ride along the river with global leaders and FOXG1 children

Samuel’s Birthday Lunch — surrounded by friends from around the world

Eiffel Tower & Park — the next day, FOXG1 families visited the Eiffel Tower

Thank You

To our global leaders: thank you for taking the lead in your respective regions and building communities. Every family you find, every parent you connect to this community, and every dollar you raise is moving us toward the same goal: a world where FOXG1 syndrome is treated.

And to every supporter who has stood behind this work: you made this weekend possible. This Global Leadership Meeting is the first of many. We are moving quickly, in unity, and with so much exciting news still ahead.

Onward!