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…
Ages 17-18
Many families ask, “When should I start planning?” Some families may be feeling they are already behind in the process and are wondering, “Is it too late to start planning?” If your loved one is older than age 13 and…
Ages 13-16
Many families ask, “When should I start planning?” Some families may be feeling they are already behind in the process and are wondering, “Is it too late to start planning?” While this guide targets age 13 as a starting point…
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…
Savannah’s spirit will forever live on in the hearts of all who had the honor of knowing and loving her!
The LGS Foundation and our entire community are deeply saddened by the news of the passing of Savannah, the beloved daughter of our Executive Director, Tracy Dixon-Salazar. Savannah’s spirit will forever live on in the hearts of all who had…
Why advocating for people with disabilities, rare diseases, and chronic illnesses is important to the LGS Community!
Every year, during the last week of February, advocates representing dozens of rare diseases, take time from their chaotic, medically complex lives and travel to Washington, D.C. to raise awareness of the needs of the rare disease community. And LGS…
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…
