Breaking New Ground: Highlights from Our First-Ever Research Workshop

Last week marked a major milestone for our community: the successful launch of our very first research workshop. What began as an ambitious idea to bring together the scientific community in a shared space for collaboration became a reality—one that exceeded expectations and sparked exciting momentum for the future.

The workshop was held in New York City on July 24th and 25th and convened a diverse group of researchers, clinicians, students, and caregiver and industry representatives with goals to drive research progress, improve patient care, and foster collaborations so that we can all go farther and faster in our work to bring help and hope to the GLUT1 Deficiency community.

The workshop was built around the belief that meaningful progress happens when stakeholders come together not just to present ideas, but to listen, learn, and look for ways to help each other and work together. Over the course of two days, participants engaged in focused discussions on key topics ranging from disease models and protocols, data collection and sharing, clinical trial readiness, and centers of excellence for patient care.

One of the most powerful aspects of the event was the spirit of openness and collaboration. Researchers shared glimpses into their current work and their ideas for next steps; family stories were shared to give insights into lived experience; and cross-disciplinary teams began laying the groundwork for future partnerships and studies.

Among the key outcomes of the workshop:

• Shared Research Priorities: Participants worked together to identify the most urgent questions and promising directions to update the Research Compass with patient needs and priorities at the core.
• Cross-Sector Collaboration: New connections formed across academic institutions, disciplines, career stages, and fields—connections that are already evolving into joint projects.
• Patient Voice at the Center: Patient experiences and perspectives helped shape every conversation, ensuring that future research will reflect the outcomes that matter most to those who live with the daily burdens of this disease.
• Launching Initiatives: Plans were sketched out for a center of excellence program, a basic patient registry, clinical data collection, a disease severity scale, a core outcome set, and a meeting focused on GLUT1 across diseases and fields.
• Providing Resources: Developing more open source disease models and increasing access to existing models and protocols was an important topic of discussion.

The workshop was more than just a one-time gathering—it was another big step in a sustained, community-driven research movement. We’re incredibly grateful to everyone who attended and contributed their time, expertise, and passion. Your voices shaped the conversation, and your ideas will shape what comes next.

Sandra has created a summary of some of the information and updates shared in the lightning talks. We are so grateful to all for helping us launch this bold new chapter – and the future already looks brighter.