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…
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…
Our grandson Patrick is 28 years old and has lived with Lennox-Gastaut Syndrome (LGS) since he was just 4. He’s the eldest of our daughter’s four children, and for the past eight years, he has lived with us full-time. Before…
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…
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…
