Grayson’s journey of resilience, love, and life with Lennox-Gastaut Syndrome.
Grayson’s story began like many others—full of hope, excitement, and dreams for his future. But over time, it became clear that his path would look very different from what we once imagined. Just one week before his third birthday, Grayson…
September 25, 2000 – November 19, 2016
Maggie Grace Lyons loved everyone she met. Though she never spoke a word, she said so much with her beautiful blue eyes. She loved being outside—singing, swinging, and spending time with her family. Maggie adored her stuffed animals, especially her…
Kairo’s Journey with Lennox-Gastaut Syndrome
Kairo’s story began on the day of a total solar eclipse, a moment where light and darkness stood side by side. We didn’t know then how fitting that would be for his life. His seizures started when he was still…
Why Showing Up Matters
Every year, patient advocates, caregivers, and researchers from across the country travel to Washington, D.C. to attend Rare Disease Week on Capitol Hill, organized by the EveryLife Foundation for Rare Diseases. They bring one shared goal – to make sure…
October 10, 2002 – March 8, 2019
My daughter, Caitlin Elizabeth Cline, was born on October 10, 2002. She was deeply loved and brought so much light into our family. There are too many memories of Caitlin to count. One of her brothers’ favorites was playing tag…
The Lennox-Gastaut Syndrome (LGS) Foundation and the National Organization for Rare Disorders (NORD) launched a study with global reach to research LGS and LGS-Related Developmental and Epileptic Encephalopathies (LGS-DEE), which are a group of rare diseases characterized by uncontrolled seizures,…
Our journey with Lennox-Gastaut Syndrome (LGS) began on Thanksgiving Day in 2008, when my grandson Kameron was three years old. My son-in-law called while rushing to the emergency room and said Kameron seemed unconscious, was making strange sounds, his eyes…
03/31/2007 - 02/12/2023
Savannah was my first granddaughter, and from the very beginning, she brought a special kind of joy into my life. Even though we lived far apart and only saw each other a few times a year, the time we shared…
Highlights from the 2025 American Epilepsy Society Annual Meeting
The 2025 American Epilepsy Society (AES) Annual Meeting took place December 5–9 in Atlanta, Georgia, bringing together nearly 6,000 epilepsy clinicians, researchers, advocates, and industry partners from more than 60 countries. Across the meeting, Lennox-Gastaut syndrome (LGS) was a clear…
The struggle to get a good night’s sleep is one of the most debilitating and constant challenges LGS families face. Yet good sleep is essential for emotional and physical well-being, not just for those with LGS, but for the entire…
