Lgs Foundation

The LGS Foundation organized its biennial International Family & Professional Conference, hosting three days of educational, scientific, and community-building sessions for more than 350 attendees, including families, clinicians, scientists, allied health providers, and industry partners around the world. The conference featured 18 expert-led educational sessions, six interactive clinical and research workshops, and breakout groups on sleep management, SUDEP prevention, behavioral and cognitive therapies, and transition planning to adult care. Dedicated family engagement programming included a Sib Camp for siblings, full inclusion of individuals with LGS, and caregiver roundtables to share lived expertise and foster peer connections. LGS Family and Professional Conference: Additionally, the conference provided access to one-on-one consultations with renowned epilepsy experts, allowing families to ask questions about diagnosis, therapies, genetic testing, and individualized care strategies. An on-site resource fair, supported by 14 partner organizations and sponsors, gave participants direct access to information on clinical trials, assistive technologies, and community services. The Foundation awarded 168 travel scholarships, 84 for individuals who have never attended the conference, and provided accessibility services to ensure the event was inclusive and accessible to families who could not attend. Conference presentations were recorded and distributed post-event, with over 6,500 views and ongoing access supporting lifelong learning for stakeholders unable to attend in person. This multifaceted event continues to advance the LGS Foundations goal of nurturing a well-informed, resilient, and interconnected global community.

Research Grants and Funded Initiatives: To date, the LGS Foundation has hosted 12 international LGS research convenings and awarded over $2 million in competitive research grants supporting 18 high-impact projects focused on understanding disease mechanisms, improving treatments, and advancing toward cures for LGS. These convenings and grants have contributed to significant scientific progress, including studies on novel therapeutic approaches and clinical trial endpoints. The Foundations research portfolio supported 2 new funded studies in 2024, one on moving us towards preventing LGS by identifying early risk factors and one on formulating an international consensus for the diagnosis and management of LGS. Findings from convenings and grants are published in peer-reviewed journals and presented at major scientific conferences. The LGS Foundation also supports the LGS Learn from Every Patient Database, a natural history registry that includes electronic health records and real-world data from caregivers living with LGS. 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, targeted treatments, genetics, epidemiology, and neural networks. The Foundations commitment to research has helped accelerate research on LGS, which would not otherwise be undertaken. These accomplishments reflect the Foundations dedication to improving the lives of individuals with LGS and their families through robust support, education, and research initiatives.