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…
For 42 years we assumed our beloved son Charlie was singular in his complex array of medical issues. It was only six months ago that we learned he belongs to a sliver of individuals with Lennox-Gastaut Syndrome. A simple notation…
Caregiving requires sacrificing the freedoms that most families take for granted. You lose the ability to simply do what you want, when you want—whether that’s deciding how to spend the next hour or planning a family vacation. Being a caregiver…
Our amazing son Mason is 18, and he was diagnosed with LGS when he was 3 years old. It’s been quite a journey so far, with the euphoric highs you expect as a parent, and soul-crushing lows that you NEVER…
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…
From seizures to full lives through precision diagnoses, precision treatments, and whole‑life care
Every family living with Lennox‑Gastaut Syndrome knows how hard this journey can be—and how deeply we all dream of better answers and brighter days. That’s why the LGS Foundation is taking on the biggest barriers standing between families and a…
First published: February 8, 2025
Vagus nerve stimulation therapy in Lennox-Gastaut syndrome (severe childhood epilepsy): plain language summary of a 2-year study Surgical interventions are one form of therapy for LGS patients and include cortical resection (resection), corpus callosotomy (callosotomy), or device therapy. Therapeutic neuromodulation…
First published: November 24, 2025
EEG functional connectivity as a marker of evolution from infantile epileptic spasms syndrome to Lennox–Gastaut Syndrome Early diagnosis and effective treatment significantly improve LGS outcomes and reduce costs. However, LGS diagnosis is difficult, relies on a combination of EEG features…
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…
