Powering Breakthroughs in Lennox-Gastaut Syndrome: A National Movement This April Is Transforming Community Action Into Cutting-Edge Research

2026-04-06 13:03:58

PR Newswire

SAN DIEGO, April 6, 2026

SAN DIEGO, April 6, 2026 /PRNewswire/ – The Lennox-Gastaut Syndrome (LGS) Foundation and community are mobilizing Walks for LGS Research around the country this month. This national event unites families, researchers, clinicians, and industry partners around a shared mission: Stepping Together for a Breakthrough and changing the landscape of LGS forever.

More than one million individuals worldwide are affected by LGS, a severe developmental epileptic encephalopathy characterized 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 bold, measurable 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. Together, these initiatives prioritize patient-driven research, real-world data, and industry collaboration to move discoveries from bench to bedside faster than traditional models allow.

Precision Diagnoses: Works to reduce the time from first seizure to accurate LGS diagnosis from years to months by funding biomarker studies and building a national early-diagnosis network. Earlier identification not only improves outcomes for children and families, but also enables more efficient clinical trial enrollment and development timelines.
Precision Treatments: Focuses on catalyzing at least two disease-modifying or disease-reversing therapies into clinical trials within the next decade. By funding bold science, supporting research consortia, and aligning around patient-prioritized outcomes, the LGS Foundation serves as a strategic partner to biotech and pharmaceutical innovators seeking meaningful impact in rare disease.
Whole-Life Care: Addresses inequities in access and outcomes by expanding recognized 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.

“We threw ourselves with every ounce of energy we could find into therapies and medical treatments. Countless medications were tried – many that had side effects that made us feel like we were putting out his beautiful light. So many failed to help at all. Some helped for a while then stopped.” - Tricia, Mom to Mason, Living with LGS.

The LGS Foundation measures success in family outcomes, not just papers. Families like Mason’s deserve better than guesswork. They deserve real answers, real treatments, and real support.

**Get Involved Today

**Participate in a Walk for LGS Research happening this month or make a gift to support research. All proceeds fuel these breakthroughs.

**About the LGS Foundation

**The Lennox-Gastaut Syndrome (LGS) Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS. It educates the public about LGS, supports families living with the condition, and drives research to find the cures.

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SOURCE Lennox-Gastaut Syndrome (LGS) Foundation

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