Relive the Joy of Our First-Ever LCC Conference
Thirty-five families, researchers, and advocates. Four days. One room, for the first time ever.
From July 22 – 25, 2026, the LCC community gathered in St. Louis for an event that had been years in the making: the first-ever Global LCC Family & Research Conference. Families who had only ever connected online finally met face to face. Researchers sat alongside parents and caregivers, listening as much as they presented.
For four days, one hotel ballroom held an entire community that is usually scattered across the country and, in many cases, across the world.
Over three days, we came together to build relationships, learn from one another, and accelerate treatment discovery through collaboration. Looking around and seeing 35 members of our community in one room was a powerful reminder of what is possible when every voice has a seat at the table.
A Community Connected
Attendees describe the weekend in similar terms: hugs that lasted a little too long, conversations that ran past midnight, and children playing together as if they had known each other for years.
For many families, it was the first time they had ever been in a room with someone who truly understood their day-to-day reality. And that sense of recognition was priceless.
Whether you joined us in St. Louis, watched from home, or couldn’t make it this year, we want to share a glimpse of the joy, connection, and momentum from our first-ever Global LCC Family & Research Conference.
Researchers Alongside Families
Beyond the reunions and new friendships, the conference carried a clear working purpose. Researchers presented their findings and also sat down with families to listen and learn directly from the people living with LCC every day. We also conducted assessments to gather crucial information to power our research.
This collaboration became the starting point for a treatment roadmap built around the priorities and lived experience of the community it is meant to serve, a project the Foundation will share more about in the coming weeks.
Impact Lasting into the Future
Bringing thirty-five families, researchers, clinicians, and advocates into the same room for four days was powerful. Relationships formed in St. Louis will shape research priorities, support networks, and advocacy efforts for years to come.
If you weren’t able to join this year, know that you were missed and that you remain very much part of this community. The Foundation looks forward to the day when even more families can be together in the same room.
Thank you to everyone who traveled to St. Louis, and to everyone who is helping build a stronger, more connected community and an accelerated path toward treatment.