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…
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…
02/20/2006 - 12/21/2024
Jesus, whom I will always remember as the little Jesus of my heart, was a child who since he was born had many medical complications apart from epilepsy. He was always very brave, even though he never had the opportunity…
Hope Abounds as Lennox-Gastaut Syndrome (LGS) Research Took Center Stage at the 2024 American Epilepsy Society Meeting Increased awareness and research positioned LGS as a major area of interest at this year’s AES Annual Meeting. LGS was highlighted as more…
A New Wave of Hope
The DEEp OCEAN clinical study is assessing the safety of the investigational drug, bexicaserin, and its potential to reduce the number of seizures in children and adults with Developmental and Epileptic Encephalopathies (DEE). Eligible participants include individuals aged 2 to…
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. The biggest difference between the two is that palliative care supports a person’s…
Zander's Story
At 14 months old Zander had open heart surgery. As a result, 2 weeks post-surgery Zander suffered cardiac arrest. Before this, he was a thriving little boy. Then on December 19th, his life changed forever. We spent 4 months in…
