The Lennox-Gastaut Syndrome (LGS) Foundation is mobilising Walks for LGS Research around the US this month. The event unites families, researchers, clinicians, and industry partners around a shared mission: stepping together for a breakthrough to change the landscape of LGS forever.
More than 1m people worldwide are affected by LGS, a severe developmental epileptic encephalopathy characterised by multiple treatment-resistant seizure types and a high burden of comorbidities, including significant developmental delays. Despite decades of effort, progress has been slow, largely due to delayed diagnosis, limited disease-modifying therapies, and fragmented care systems. The Walk for LGS Research directly fuels the foundation’s research agenda aimed at dismantling these barriers.
Proceeds from the Walk support the Powering Breakthroughs: Tackling The 3 Grand Challenges in LGS initiative. This long-term strategy aims to transform the LGS landscape through precision diagnoses, precision treatments, and whole-life care. The initiatives prioritise patient-driven research, real-world data, and industry collaboration to move discoveries from bench to bedside faster than traditional models allow.
Earlier identification not only improves outcomes for children and families, but also enables more efficient clinical trial enrolment and development timelines.
Precision treatments focus on catalysing at least two disease-modifying or disease-reversing therapies into clinical trials within the next decade. By funding science, supporting research consortia, and aligning around patient-prioritised outcomes, the LGS Foundation serves as a partner to biotech and pharma innovators seeking meaningful impact in rare disease.
Whole-life care addresses inequities in access and outcomes by expanding recognised LGS clinics and implementing a unified outcomes registry. This real-world data infrastructure is designed to benefit families while providing industry and researchers with actionable insights into best practices and long-term treatment effects.