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The Launch of LGS-CORE Study

On February 24, 2026, the Lennox-Gastaut Syndrome (LGS) Foundation, in collaboration with the National Organization for Rare Disorders (NORD®), proudly announced the launch of the LGS-CORE Study. This groundbreaking initiative aims to create a global platform designed specifically for individuals living with Lennox-Gastaut Syndrome—a condition marked by various types of severe seizures that can lead to lifelong developmental challenges.

The Importance of the LGS-CORE Study

Lennox-Gastaut Syndrome affects not only the individuals diagnosed but also their families and caregivers. The challenges posed by the condition extend well beyond seizures, impacting areas such as sleep quality, behavior, mobility, nutrition, and communication skills. Currently, there is no cure for LGS, making the establishment of comprehensive research and resource sharing crucial for improving outcomes.

The LGS-CORE Study is envisioned as a collaborative effort where patients, caregivers, and families can share their experiences and data. This initiative was developed with inputs from scientists, medical professionals, and families of patients, ensuring that it effectively addresses the real needs and challenges faced by those affected by LGS.

Objectives and Expected Outcomes

Dr. Tracy Dixon-Salazar, the Executive Director of the LGS Foundation and a mother to a daughter living with LGS, emphasized the study’s goal: "The LGS-CORE Study will provide a complete picture of each patient's experience with Lennox-Gastaut Syndrome. We are launching this initiative to help fill in the missing information researchers and medical experts need to advance research and one day, find a cure."

The LGS-CORE Study is set to enhance the understanding of Lennox-Gastaut Syndrome by compiling and analyzing patient data. This resource will be invaluable to researchers, empowering them to explore innovative treatment options and expedite drug development aimed at improving patient care for those affected by LGS.

About the LGS Foundation and NORD

The Lennox-Gastaut Syndrome Foundation is a dedicated non-profit organization focused on enriching the lives of individuals impacted by LGS. Through educational outreach, supportive resources for families, and cutting-edge research funding, the Foundation is committed to making strides toward discovering viable treatments.

NORD, the National Organization for Rare Disorders, represents patients and families touched by rare diseases like LGS. With a rich history of advocacy and support, NORD has been instrumental in elevating the needs of the rare disease community and supporting policies that promote research and medical advancements.

A Call to Action

By launching the LGS-CORE Study, both organizations are not just gathering data; they are strengthening the community's voice and positioning researchers to push boundaries in the search for effective treatments. Participants in the study will play a critical role in driving forward the research agenda, helping to close the gap in knowledge and support for LGS patients.

Families, caregivers, and individuals living with LGS are encouraged to engage with this study and contribute their experiences, as each contribution will bring humanity to the clinical data and foster hope in the fight against this challenging condition.

Conclusion

The LGS-CORE Study signifies a major leap forward in collaborative research dedicated to Lennox-Gastaut Syndrome. By harnessing the insights of those who experience this condition firsthand, the LGS Foundation and NORD are paving the way for innovative research that holds the promise of hope and healing for countless individuals. For more information on how to participate, please visit the LGS-CORE Study website.