ATLANTA, Dec. 1, 2025 /PRNewswire/ — The LGS Foundation is announcing an expanded research agenda and outreach effort to galvanize the scientific, medical and industry communities around the rare and devastating seizure disorder known as Lennox‑Gastaut Syndrome (LGS) at the American Epilepsy Society’s (AES) Annual Meeting in Atlanta, GA this weekend.
An Urgent Need
LGS is a severe developmental and epileptic encephalopathy with multiple seizure types, developmental delay, and cognitive and behavioral comorbidities. The disease remains highly refractory, and new disease-modifying treatments are urgently needed. The LGS Foundation has a track record of convening families, clinicians, researchers and industry, catalyzing research and elevating the patient-family voice. By offering access to validated animal models, grant funding and a community of commitment, the Foundation aims to accelerate the pace of discovery and therapeutic development in LGS.
Key Initiatives
- Grants: The Foundation offers grants under its Cure LGS 365 Research Grant program, awarding seed funding to high-quality basic, translational, and clinical projects. The Foundation has prioritized strategic research areas including biomarker discovery, natural history studies, and determining the best approach to reduce seizures in LGS, as identified during its recent LGS Research Meeting of the Minds convening.
- Mouse Models: Researchers now have access to two mouse models and other disease-model platforms to study mechanisms of LGS, test interventions and accelerate therapeutic development. For example, a current project used an established KCNB1-associated LGS mouse model to evaluate low-intensity ultrasound for seizure treatment.
- LGS and Related DEE Natural History Study: The Foundation is gearing up to roll out the second phase of the Learn From Every Patient Database, aimed at kick-starting LGS natural history studies. Phase one enrollment will continue.
- Family Educational & Support Programs: The Foundation invites HCPs to support awareness of LGS and direct patient-families toward the Foundation’s resources and community as part of a broader care-ecosystem.
- Industry Partnerships: Industry partners are encouraged to collaborate with the Foundation’s research infrastructure and internal research engines to advance novel therapeutic strategies for LGS.
Tracy Dixon-Salazar, PhD, Executive Director of the LGS Foundation and Mom to Savannah shares, “Because we commit our minds to science and our hearts to compassion, even the most complex challenges—like LGS—have become opportunities for hope and change.“
Call to Action
- Researchers: Review the RFP and apply for funding via the Cure LGS 365 Research Grant program. Explore the disease models now available and partner with the Foundation to advance LGS research.
- Healthcare Professionals: Share the Foundation’s resources with your patient-families impacted by LGS. Encourage their engagement with the LGS community and participation in the Learn from Every Patient Database.
- Industry Partners: Collaborate with the LGS Foundation – access models, data, patient-families and infrastructure – to build research pipelines and bring novel therapies to the LGS community.
About the LGS Foundation
Founded in 2008, the LGS Foundation is a nonprofit organization committed to ending the suffering caused by Lennox-Gastaut Syndrome. The Foundation acts as a convener of the LGS community—families, clinicians, researchers and industry partners—to drive progress in treatment and cure. Over the years, the Foundation has supported the first-ever animal models of LGS, helped convene a patient-focused drug development meeting, launched registries and funded critical research. For more information, visit www.LGSFoundation.org.
SOURCE Lennox-Gastaut Syndrome (LGS) Foundation
