Glut1 Deficiency Foundation Inc

THE GLUT1 DEFICIENCY FOUNDATION IS A NONPROFIT PATIENT ADVOCACY ORGANIZATION DEDICATED TO IMPROVING LIVES IN THE GLUT1 DEFICIENCY COMMUNITY THROUGH ITS MISSION OF INCREASED AWARENESS, IMPROVED EDUCATION, ADVOCACY FOR PATIENTS AND FAMILIES, AND SUPPORT AND FUNDING FOR RESEARCH.

THE GLUT1 DEFICIENCY FOUNDATION SUPPORTS RESEARCH TO LEAD TO BETTER UNDERSTANDING, BETTER TREATMENTS, AND A CURE FOR GLUT1 DEFICIENCY. RESEARCH PROJECT GRANTS ARE DISTRIBUTED TO SCIENTISTS WITH PROJECTS THAT ADDRESS NEEDS AND PRIORITIES IDENTIFIED THROUGH COLLABORATIVE STAKEHOLDER PROCESSES IN DEVELOPMENT OF OUR STRATEGIC RESEARCH PLAN (RESEARCH COMPASS). IN 2023, THE GLUT1 DEFICIENCY FOUNDATION FUNDED EIGHT PROJECTS AT EIGHT INSTITUTIONS FOR A TOTAL OF $81,195. ADDITIONAL RESEARCH FUNDS WERE INVESTED IN EFFORTS TO DEVELOP AND PROVIDE OPEN SOURCE RESEARCH TOOLS, ATTEND SCIENTIFIC MEETINGS AND TRAININGS, DEVELOP AND HOST RESEARCH FUNDAMENTAL TRAININGS, AND COLLECT, PROCESS, STORE PATIENT BIOSAMPLES FOR RESEARCH PROJECTS AND BIOREPOSITORY BANKING, AND CONTINUE BUILDING OUR COLLABORATIVE RESEARCH NETWORK.

THE GLUT1 DEFICIENCY FOUNDATION IS ENGAGED IN COLLABORATIONS WITH NATIONAL AND INTERNATIONAL RARE DISEASE PATIENT ADVOCACY ORGANIZATIONS TO PROVIDE A REPRESENTATIVE VOICE FOR PATIENTS AND FAMILIES IN PUBLIC DISCUSSION AND POLICY ISSUES. THE G1DF ADVOCATES FOR FAMILIES AND PATIENTS ACROSS SCHOOL, HEALTHCARE, AND DISABILITY PROGRAMS TO MAKE SURE THE CHALLENGES OF THE DISEASE ARE UNDERSTOOD AND THAT PATIENT RIGHTS ARE BEING PROTECTED. ADVOCACY EFFORTS FOR 2023 INCLUDED MULTIPLE INDIVIDUALIZED LETTERS OF SUPPORT FOR SCHOOL, INSURANCE, AND OTHER RELATED SERVICES FOR PATIENTS, ATTENDING ANNUAL MEETINGS WITH NORD AND GLOBAL GENES, THE NINDS NONPROFIT FORUM, SIGNING ON TO SUPPORT A NUMBER OF JOINT ADVOCACY EFFORTS,AND MEMBERSHIP IN NORD, GLOBAL GENES, THERARE EPILEPSY NETWORK, EPILEPSY ACTION NETWORK, THE CZI RARE AS ONE NETWORK, AND COMBINEDBRAIN. THE G1DF ATTENDED MULTIPLE ONLINE TRAININGS AND MEETINGS IN SUPPORT OF ADVOCACY EFFORTS.

THE GLUT1 DEFICIENCY FOUNDATION HAS SEVERAL OUTREACH PROGRAMS TO HELP RAISE AWARENESS AND IMPROVE EDUCATION AMONG STAKEHOLDERS IN THE COMMUNITY. WE HOSTED A RESEARCH READY CONVENING IN PERSON AND ONE VIRTUAL SESSION TO BRING STAKEHOLDERS TOGETHER TO MEET, SHARE, AND LEARN. WE HOSTED EDUCATIONAL EXHIBITS AT FIVE PROFESSIONAL MEDICAL MEETINGS. WE PROVIDED 112 WELCOME PACKETS TO NEWLY DIAGNOSED FAMILIES FROM 23 COUNTRIES. WE HOST MONTHLY VIRTUAL MEETINGS FOR PARENTS/CAREGIVERS, THE HISPANIC COMMUNITY, TEENS/TWEENS, AND ALSO YOUNG ADULTS. WE MAINTAIN AN INCREASING NUMBER OF RESOURCES ON OUR WEBSITE, AND WE UPDATED AND REDESIGNED OUR EDUCATIONAL BROCHURE. WE CREATED AN EDUCATIONAL VIDEO ABOUT THE HISTORY OF OUR DISEASE AND AS A TRIBUTE TO THE PHYSICIAN/SCIENTIST WHO FIRST DESCRIBED IT. WE PARTNERED IN A GLOBAL KETOGENIC DIET CONFERENCE WITH SPECIAL FOCUS ON GLUT1 DEFICIENCY.