Happy New Year!
As we wrap up 2025, we want to share our heartfelt gratitude for the many ways you’ve supported our mission this year.
Because of you, important work continued to move forward: research advanced, education and awareness reached more people, and families found connection and support in moments when it mattered most.
This video shares just a few of the highlights that shaped the year – all made possible by your generosity and belief in this mission.
As we look ahead, we’re filled with both determination and hope. There’s still so much to do, but we’re encouraged by the progress we’ve made together and motivated to keep pushing forward in the year ahead with our 2026 goals:
BRING OUR COMMUNITY TOGETHER:
- Host the GLUT1 Deficiency Scientific and Family Summit, creating opportunities for families, clinicians, and researchers to meet, share, learn, and move the field forward – together.
BUILD A STRONGER CARE NETWORK:
- Launch Collaborative Care Centers, helping ensure more families have access to coordinated, expert care closer to home.
ACCELERATE RESEARCH – TOGETHER:
- Expand our Collaborative Research Network (CRN) to connect more investigators, labs, and ideas around what matters most to patients and families.
- Fund a drug repurposing project to accelerate potential treatment options using existing therapies.
- Support targeted seed funding for critical needs like cell lines and animal models in addition to small yet high-impact projects that keep research moving.
- Participate in the RAD Brain Workshop, building advanced expertise and strengthening our ability to accelerate research and drug development for the GLUT1 Deficiency community.
STRENGTHEN PATIENT-POWERED DATA:
- Launch a basic patient registry, giving families an easy and meaningful way to share their stories and contribute data that can shape research, trials, and future care.
- Expand our natural history study, providing more in-depth insights into the patient experience across the lifespan.
LAY THE FOUNDATION FOR CLINICAL TRIALS:
- Continue our work groups to:
- Develop a disease severity scale
- Define a core outcome set
- Begin clinical data collection
- Plan a GLUT1-focused research meeting
- Expand shared research tools, knowledge, and resources
GROW PROGRAMS THAT MEET REAL NEEDS:
- Expand patient, family, and community programs to provide support, education, and connection across every stage of the GLUT1 journey.
STRENGTHEN LEADERSHIP:
- Welcome new board members, bringing fresh perspectives, expertise, and energy to guide the G1DF into its next chapter.
Each step forward brings us closer to better treatments and brighter futures for everyone affected by GLUT1 Deficiency. Thank you for caring about our community – your help and support really do make a difference.
Wishing you a new year filled with health, happiness, and hope.💛
