2026 GLUT1 DEFICIENCY
Scientific and Family Summit
We were delighted to host the 2026 GLUT1 Deficiency Summit - our 12th community convening - in beautiful Asheville, North Carolina. We welcomed 400 attendees for an incredible opportunity to meet, share, and learn alongside each other as we brought together clinicians, researchers, and families to share knowledge, build and strengthen collaborations and connections, drive research progress, improve patient care, and ease burdens.
Summit Goals:
- improve patient care
- support and empower families through connection and community
- amplify the patient voice in research
- share the latest scientific and clinical insights
- foster cross-disciplinary collaborations
- identify critical gaps and strategies to address them
- inspire and attract new researchers and specialists
- engage and unite all stakeholders to drive progress
Summit Resources:
We're putting together resources to share in hopes it will be helpful to those who joined us in person but also to those who were not able to be there. This page is a work in progress - please continue to check back as more resources are finalized and gathered!
Miscellaneous:
- Program Book with Agenda
- Speaker Photos and Bios
- Slido Insights
- Slido Q&A coming soon!
- Attendee Survey
- Summary Blog Post
- Sleep Informational Guide
- Summit Photos send us your favorites to add!
- Summit Spotify Playlist
- Tribute to Dr. Jong Rho
Presentations and Resources:
Marisa Armeno, MD, PhD: What's New On Ketogenic Therapy for GLUT1 Deficiency Syndrome?
Mattia Bonzanni, PhD: Sleep Instability in GLUT1 Deficiency Syndrome
Roba El Zibaoui, MD: Presentation Slides
Publication: Clinical, Practical, and Psychosocial Challenges of Living with Glucose Transporter Type 1 Deficiency Syndrome
Gauri Kathote: Study of Sleep Spindle Properties in a G1D cohort
Eric Kossoff, MD: The Impact of Puberty on Children with GLUT1 Deficiency Syndrome
Becky Olson, EdD: Fueling the Rare Brain
Social Stories Resources Pathway to Progress Insights
Dana Pottschmidt, MSW: Asheville Recap (GLUT1 Gatherings Summary Slides) Care Binder Resources
Glenna Steele: Opening Message; G1DF Updates
Robin Williams, PhD: Metabolism & Dietary Treatments for GLUT1DS
2028 Summit:
- Learn more about plans for the 2028 Summit!
- We'll gather in another brand new Embassy Suites, this time along the coast in beautiful Gulf Shores, Alabama.
- Gulf Shores is a family-friendly destination with lots to see and do before or after the Summit.
- Registration and hotel reservations are planned to open late summer 2027.
- Keep your lanyard buttons and add to collection next year!
Summit Sponsors:
We are grateful for the support of our sponsors and exhibitors, who help make the gathering possible and share important and helpful information and resources with our community.
Sponsors and Exhibitors:
