In April 2026 we launched our new science strategy: The Fastest Path Forward.

The first focus area of this strategy is building CACNA1A Connect, a new platform designed to make it easier for families to participate in research and share their lived experiences. Expected to launch November 2026.

When CACNA1A Connect is ready to launch we will update the community and focus our data collection efforts on having families enroll in CACNA1A Connect. Families have consistently told us that research needs to reflect real life: what symptoms matter most, how experiences change over time, and what meaningful progress looks like day to day. CACNA1A Connect is being designed with that in mind. Bringing information together in one place will help us better understand the broad spectrum of CACNA1A-related disorders while creating opportunities for researchers and clinicians to learn from the experiences of our community. Just as importantly, it helps ensure that this work remains grounded in the priorities and perspectives of families.

In the coming months, we will share more about CACNA1A Connect and ways to participate. 

In the meantime, our families have already helped build an extraordinary foundation for research through participation in efforts like Natural History studies, RARE-X, Citizen, and other initiatives. Those contributions represent years of commitment, trust, and partnership. As part of The Fastest Path Forward, our second scientific focus area is learning as much as possible from the data we have already collected. Rather than treating each project as a separate effort, we are now working to bring these pieces together and look at the bigger picture. We want to better understand patterns, identify gaps, and generate insights that can strengthen research across the field.

This work has the potential to help us improve clinical care recommendations, support stronger standards of care, guide future research decisions, and help ensure that future studies and clinical trials reflect the realities of families living with CACNA1A-related disorders.

Each of these studies collects different types of information and complements each other to provide a more comprehensive and robust understanding of CACNA1A-related diseases. We encourage families to continue to participate in these studies as we work to launch CACNA1A Connect.