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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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Infantile Spasms Awareness Week

#ISAW

What is Infantile Spasms awareness week (ISAW)? Infantile Spasms Awareness Week (ISAW) is held annually on December 1-7 to raise awareness of Infantile Spasms (IS). ISAW is hosted by the Infantile Spasms Action Network (ISAN), a group of more than…

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Living with LGS: Andrea’s Story

Hi, I’m Alejandra, Andrea’s mother, my beautiful angel who had a normal childhood until she was seven years old. I still remember waking up and hearing the sound that my little Andrea emitted, I thought she was drowning when I…

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In Loving Memory of João Miguel Martins Nunes

3/17/1995 - 7/16/2020

Miguel was so sweet. Such a lovely baby! He used to smile and run all the time! He was born without any problem, but, suddenly, the seizures started and never went away. He didn’t talk anymore and was submitted to…

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Our Board of Directors

It is a pleasure to introduce Our Board of Directors to You Our Board of Directors brings a wealth of experience and expertise to the LGS Foundation, united by their passion for our mission to end the devastation and suffering…

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In Loving Memory of Jayden Burns

9/14/2020 - 9/25/2022

Jayden was diagnosed with epilepsy at four months old. He has been through many hospital stays. Also, changing the dosages of his medicine. Which wasn’t working. In April of 2022, he was diagnosed with LGS. He was such a strong…

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PACIFIC Research Study

NOT RECRUITING

The PACIFIC Study is a clinical trial for a drug called LP352. This study will assess the safety and tolerability of this drug as well as examine changes in seizure frequency over the 90-day treatment period. The study plans to…

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Carisbamate for Seizures

What is Carisbamate? 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. Carisbamate (the…

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Caregiver Support

Being a caregiver for a loved one with LGS is a commitment unlike any other. Caregiving requires limitless amounts of energy, empathy, and patience. While most caregivers will tell you that taking care of a loved one is a genuinely…

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The Skyway Study for Soticlestat

A Clinical Trial Open to Those With Seizures Associated with LGS

The Skyway Study is a Phase 3 clinical research study of an investigational medication for children, teens, and adults diagnosed with Lennox-Gastaut Syndrome (LGS) who are currently using 0-3 anti-seizure medications to manage symptoms and are still experiencing seizures. The…

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