LGS Learning & Resource Center

LGS IS HARD. FINDING INFORMATION DOESN’T NEED TO BE.

The LGS Foundation is dedicated to providing a comprehensive LGS Learning and Resource Center (LLRC) so those living with LGS can #NeverStopLearning

Whether it is to find a doctor, learn about epilepsy surgery, understand seizure clusters, or something else, the LLRC is here for you.

We are working hard to add topics to the LLRC. Is something missing? Please let us know at info@lgsfoundation.org

Palliative Care vs Hospice

What are palliative and hospice Care? Palliative care and hospice care both focus on the comfort, care, and quality of life for individuals with a serious illness. Hospice care is a specific type of palliative care that is provided in…

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List of Treatments for Seizures

This page offers a list of FDA- approved treatments often used in those with LGS. Not all medications used in LGS are listed here. This list reflects U.S. FDA-approved medications. For info on epilepsy treatments in the U.K. visit this…

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Seizure Types Associated with LGS

LGS is a lifelong developmental brain disorder and frequent, debilitating seizures are the main feature. Therapies may help, however, in most cases, they do not completely stop seizures. Seizures often change in children with LGS as they grow and develop….

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The Jazz Piccolo Study

For Children Two-Years of Age and Younger

The Jazz Piccolo Study (Piccolo means “little one” in Italian) is investigating the safety and effectiveness of cannabidiol (or CBD oral solution) in infants (2 years of age and younger) with Tuberous Sclerosis Complex (TSC), Lennox-Gastaut Syndrome (LGS) or Dravet…

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Stamp Out VNS Myths!

Our community is stronger with facts! When it comes to Vagus Nerve Stimulator therapy (VNS Therapy) for seizure reduction, do you know fact from fiction?

We are Stronger with Facts: Let’s stamp out VNS Myths! LGS is tough; finding information doesn’t need to be. That’s why we are helping our community separate fact from fiction around Vagus Nerve Stimulation (VNS) Therapy. Often, information on specific…

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Financial Resource Toolkit for LGS Families

The following list contains links to third-party websites. The LGS Foundation is not responsible for the content or privacy policies of these external sites. While we try to only list sites here that we feel contain useful information for our…

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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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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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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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