Latest News

Trick or Treat for LGS

Order or Download your free About LGS Trick or Treat cards and spread awareness during Halloween.

Get Your About LGS Trick Or Treat Cards Today! (Available in English and Spanish) Share these cards with others while Trick-or-Treating to begin a conversation about LGS.  Cards are business card sized (3.5 inches x 2 inches) and come in…

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The LGS DISCOVER Study

A Clinical Study for Children and Adults with Lennox-Gastaut Syndrome

The LGS DISCOVER study, also identified as the YKP509C003 study, is a clinical trial for pediatrics and adults with Lennox-Gastaut Syndrome (LGS). The LGS DISCOVER study will evaluate whether an investigational medicine called carisbamate, when given along with other anti-seizure…

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RNS System Clinical Trial

RNS System Responsive Stimulation for Teens and Adults with Lennox-Gastaut Syndrome (LGS) Study

The purpose of the RNS System Lennox-Gastaut Syndrome (LGS) study is to generate preliminary safety and effectiveness data for brain-responsive neurostimulation of thalamocortical networks as an adjunctive therapy in reducing the frequency of generalized seizures in individuals 12 years of…

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Celebrating 15 Years of Progress and Hope!

2008 to 2023: 15 Amazing Years of Progress!

Nobody Walks the LGS Journey Alone Formed in 2008, the LGS Foundation has since grown into an internationally recognized nonprofit organization that is improving the lives of those impacted by LGS through advancing research, awareness, education, and family support. The…

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The LGS Foundation Goes to Washington

Rare Disease Week on Capitol Hill

On the last day of February every year, we pause to honor those who are living with, or have passed away from, a rare disease. The last day of February after all, is the rarest day of the year. It’s…

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Behind the Mystery of LGS on Lifetime TV

The Balancing Act on Lifetime TV Celebrates Rare Disease Day Watch Now: The Lennox-Gastaut Syndrome Foundation: Working Together to Find a Cure Executive Director of the LGS Foundation Dr. Tracy Dixon-Salazar sits down with Montel Williams to discuss the Foundation’s…

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The LGS Foundation and the Chan Zuckerberg Initiative Rare As One Network

The LGS Foundation is proud to be part of the Chan Zuckerberg Initiative (CZI) Rare As One Network – a group of 50 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases. The LGS…

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Topiramate for Seizures in LGS

What is Topiramate? LGS is tough. Finding information shouldn’t be. That is why we provide information about this and other medications often used in LGS. We hope you find this information useful as you navigate your LGS journey. Topiramate, sold…

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LGS Foundation’s 12 Days of Giving

Thank you for the many ways you give to the LGS Foundation. Because you give, we can give to others. We invite you to follow throughout December to celebrate 12 important moments we’ve impacted together. Please give, and share these moments…

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Stellina Study for Diazepam Nasal Spray (Valtoco)

A Clinical Study for 2 to 5 Year Old Children With Epilepsy

The Stellina Study is a clinical study evaluating a single dose of diazepam nasal spray (VALTOCO) as a rescue medication in children aged 2-5 who have been diagnosed with epilepsy. The objectives of the study are to assess the pharmacokinetics…

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