Together Toward Tomorrow: Why the Summit Matters

Hello and welcome to Science with Sandra!

The GLUT1 Deficiency community is coming together for an inspiring event for connection, learning, collaboration, and hope at the upcoming GLUT1 Deficiency Summit in Asheville. Whether you are a person living with GLUT1 deficiency, a parent, caregiver, family member, clinician, researcher, industry partner, or supporter, this Summit is a unique opportunity to be part of a community working together toward a shared vision: Together, we are building a brighter future where GLUT1 Deficiency will be easy to diagnose early, treat effectively, and one day cure completely.

For 15 years, the GLUT1 Deficiency Foundation has brought families, experts, and advocates together to share experiences and accelerate progress. This year’s Summit continues that tradition by creating a space for meaningful conversations, new discoveries, and connections that will help shape the future of GLUT1 deficiency care and research.

One of the most powerful parts of the Summit is the opportunity for patients and families to share their lived experiences. These stories help researchers and clinicians better understand what it truly means to live with GLUT1 deficiency and guarantee that future research and treatments focus on what matters most to the community.

A summit built around the experiences of our community

The sessions on the clinical day will explore many aspects of life with GLUT1 deficiency, including cognition, speech and language, movement challenges, seizures,the ketogenic diet experiences and information regarding ongoing clinical trials in our community. On day 3 for the Family track, we will explore the adult experiences, social skills and future planning. These sessions are designed not only to share information but also to create conversations through interactive table talk discussions and Q&A opportunities.

Learning about the future of research and treatments

The Summit will bring together leading experts to discuss the latest advances in GLUT1 deficiency research and emerging therapies. Attendees will have the opportunity to learn about topics including the GLUT1 protein and brain metabolism, the role of the GLUT1 protein in glycosylation, clinical research, therapeutic development, gene-based approaches, RNA therapies, drug repurposing, and new strategies aimed at improving glucose delivery to the brain, as well as flash talks with diverse topics ranging from basic research to patient experiences.

The research sessions will also highlight important community-driven efforts, including updates from scientific and clinical work groups, about research tools, GLUT1 protein-focused efforts, clinical initiatives, and initiatives to better understand disease severity and patient outcomes.

This is an exciting moment for GLUT1 deficiency research. Every patient story, every data point, and every collaboration helps move the field closer to better treatments.

The conference is a place to connect 

While learning is a major part of the Summit, connection is at the heart of this gathering. The program includes opportunities for families to meet, socialize, share experiences, and build friendships. From interactive activity stations and family events to social gatherings and community dinners, the Summit celebrates the strength, resilience, and spirit of the GLUT1 deficiency community.

For many families, the Summit is a reminder that we are not alone. It is a place where people understand the challenges, celebrate the successes, and support one another through every stage of the journey.

Our voices matter

The future of GLUT1 deficiency depends on collaboration, and every person in our community plays an important role. Patients and families bring essential knowledge about daily challenges and priorities. Researchers bring new discoveries and possibilities. Clinicians bring expertise and care. Together, these perspectives create the basis for meaningful progress.

The Summit in Asheville is more than a meeting. It is an event where we learn from one another, advance research, improve care, and build a brighter future for everyone affected by GLUT1 deficiency.

We cannot wait to welcome our community to Asheville. Come ready to learn, connect, share your story, and be part of the force driving GLUT1 deficiency research and care forward.

Together, we are stronger. Together, we can make a difference.

Thank you for visiting our blog! Please do not hesitate to contact me with any questions at [email protected].