CARE FOR RARE: A Global Strategy Meeting for ETMR and ATRT

In February 2025, the Ty Louis Campbell (TLC) Foundation brought together a carefully selected group of the world’s leading experts in Embryonal Tumors with Multilayered Rosettes (ETMR) and Atypical Teratoid/Rhabdoid Tumors (ATRT) for a focused, invitation-only strategy meeting in Playa del Carmen, Mexico.

This was not a traditional scientific conference. There were no competing sessions, no rushed presentations, and no virtual distractions. Instead, the inaugural symposium intentionally created a rare and invaluable opportunity: dedicated, uninterrupted time for researchers to sit together, share unpublished data, challenge assumptions, and leave with clear, actionable next steps to accelerate progress for children facing these rare and often fatal diagnoses.

ETMR and ATRT are among the rarest and deadliest pediatric brain tumors. Because so few children are diagnosed each year, research efforts are often fragmented—spread across countries, institutions, and funding mechanisms. Progress depends not just on brilliant science, but on coordination, trust, and collaboration.

By bringing experts together in a setting designed to encourage deep discussion and relationship-building, TLC helped remove the usual barriers that slow progress. Researchers had the time and space to:

  • Present emerging and unpublished findings

  • Identify shared challenges and research gaps

  • Align on priorities for future studies and clinical trials

  • Explore opportunities to share data, models, and resources

  • Build collaborations that simply cannot form over email or at large, crowded conferences

This kind of focused convening allows ideas to move from concept to collaboration—often in days, rather than years.

This strategy meeting is a powerful example of how TLC fuels more than individual research projects—it enables infrastructure for collaboration, which is especially critical in rare pediatric cancers. By investing in the convening of minds, TLC donors helped create the conditions where breakthroughs are more likely to happen.