Introducing the LCC Treatment Roadmap

At the Global LCC Family & Research Conference in St. Louis, families, clinicians, and researchers shared a single room and a single goal: to learn from one another and to accelerate the path toward treatment. That goal took shape during the conference’s Therapy Strategy Workshop, where walls filled with sticky notes as attendees mapped out research priorities, open questions, and the concerns that matter most to individuals and families living with LCC.
The LCC Foundation is now sharing the result of that work: the LCC Treatment Roadmap Report.

Read the Treatment Roadmap Report

What the Roadmap Captures

Our Treatment Roadmap brings together the insights and priorities that emerged from the workshop and lays out the key milestones needed to accelerate progress toward clinical trials. This is a bold research agenda that is grounded in both scientific expertise and the lived experience of individuals and families with LCC.

Built on Families’ Generosity

None of this would exist without the individuals and families who chose to share medical records, brain scans, personal observations, and years of lived experience with the research team. Those contributions are now the foundation for natural history studies, biomarker discovery, new research partnerships, and the clinical trials still ahead.

The Work Continues

The momentum built in St. Louis did not end when the conference did. It continues with every family who joins the LCC community, every record shared, every new research partnership, and every step taken together toward new treatments.

The LCC Foundation is grateful to everyone who came together to help build this roadmap, and to everyone who will help carry it forward. We look forward to sharing the next steps of this roadmap in the coming months.