More seizure-free days may be on the horizon
The EMERALD clinical study is evaluating an investigational medicine, relutrigine, to understand its safety and how effective it may be at reducing seizures in children and adults living with Developmental and Epileptic Encephalopathies (DEEs). Relutrigine is an investigational medicine that…
Charlie was born on February 25, 2011, in Lansing, Michigan—the youngest of five grandsons. From the very beginning, he was full of life. He reached milestones quickly—talking, walking, and potty training earlier than his cousins. He was healthy, vibrant, and…
12/21/2006 - 06/07/2020
Emma began having infantile spasms at just seven months old. We started ACTH injections right away, and she was on them for nearly three months. For a while, she did fairly well. But when she turned three, the seizures began…
Locations Around the World Light Up for LGS Awareness
The LGS Foundation continues to shine a light on Lennox-Gastaut Syndrome as we #IlluminateForLGS—raising awareness and promoting understanding of what truly matters to LGS families. Join Us & Illuminate for LGS Awareness! Starting on November 1 and continuing throughout the…
A Life of Love, Resilience, and Butterflies
Around the age of three, Maurice began having seizures. They weren’t just one kind—he experienced several types, each unpredictable and frightening. He fell often and eventually wore a helmet to protect his head. Despite this, Maurice still lost his front…
12/04/90 - 03/12/24
Natasha’s journey began with light, laughter, and love. At just five years old, she developed epilepsy, facing every seizure type imaginable. Over time, this cruel condition stole her ability to speak, swallow, and walk. Yet, through it all, Natasha’s spirit…
04/29/2010 - 11/16/2024
Hesekiah brought joy into every room he entered, always wearing the brightest smile — no matter what he was facing. He had a heart full of love for everyone he met and a deep appreciation for life’s simple pleasures, especially…
Our Journey with Evan and LGS
My name is Ashlee, and I’m the proud mother of Evan—our joyful, resilient 5-year-old son who has completely reshaped our world. Evan was born with Muscle-Eye-Brain Disease, a rare genetic condition that presents many medical challenges. From abnormal brain folds…
12/25/1996 - 04/07/2025
Harry’s Joy Ride: A Tribute to Laughter & Love One of our favorite memories with Harry happened on long car rides. Like many families, we’d be cruising down the highway, music playing, conversations flowing. But what made our drives unforgettable…
The Lighthouse Clinical Study is currently enrolling children and adults with Lennox-Gastaut Syndrome (LGS) to evaluate a new potential treatment. The goal of this study is to learn whether an investigational medication called clemizole can help reduce the number of…
