Lennox-Gastaut Syndrome LGS Fd

Receiving a diagnosis of LGS is overwhelming and leaves families with many unanswered questions. LGSF provides patient navigator and family ambassador support to all living with LGS so that nobody has to walk the journey alone. We host a biennial professional and family conference designed to unite the community of patients, families, caregivers, researchers, clinicians, and other professionals. Our total community grew to 12,000 members in 2022 with our online caregiver community reaching 7,200 members. We have 51 ambassadors in 8 countries who help local families navigate the LGS journey. In 2022, 644 new families were onboarded to our support community. 33 online support groups were hosted, 460 new family welcome kits were mailed to get families started on their LGS journey, and 485 about LGS treatment kits were mailed so that families could understand the broad landscape of LGS treatments. We also supported approximately 120 bereaved families who have lost their loved ones to LGS. Further, we have funded over $100,000 in patient assistance since our inception. Our family support efforts continue to grow as we focus on supporting our families both locally and globally.

LGSF funds research for better treatments and cures for lgs and lgs-related epilepsies by awarding research grants to qualified scientists and clinicians. These grants fund initial research hypotheses that have not been fully explored. The results extracted from this type of research will help bring untested research to the point that it may qualify for larger governmental funding. Since 2013, LGS has awarded nearly $1.7 million to 16 research projects and over 12 research convenings. Research efforts have ramped up to increase this dramatically over the next 5 years. Research areas include death in LGS, sudep, understanding where the electrographic features of LGS originate in the brain, drug discovery, drug screening, treatments, genetics, epidemiology, and neural networks.

In 2023, LGSF brought together nearly over 170 researchers, clinicians, and LGS families to advance clinical research in LGS. Attendees were provided the opportunity to collaborate and better discuss research and treatment options for LGS and to refresh our roadmap toward the cures. The meeting was a huge success, growing the LGS collaborative research network and getting consensus on two main goals for the future: (1) advancing research in sleep, behavior, and communications in those with LGS so we can measure improvements and (2) gaining consensus on which tools are best in measuring seizures in LGS and its related comorbidities.