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…
A long-term care planning needs assessment
Overview The LGS Foundation recently participated in a new study, published in Epilepsy & Behavior, which focused on the perspectives of caregivers who are planning for the adulthood of patients with Developmental and Epileptic Encephalopathies (DEE). The anonymous, internet-based survey…
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…
The Disease Management section helps caregivers collect and organize key medical information, including contact information for all medical providers, a full medical history, current medications and dosages, allergies, medical equipment, and more. It also includes a Seizure Action Plan and…
The Advocates for LGS had a busy summer. With the recent passage of HR 1 (The One Big Beautiful Bill Act), the healthcare landscape has shifted dramatically, leaving an uncertain future for many of our loved ones with LGS. Now…
Families of children with drug-resistant epilepsy often face challenges that go beyond seizures — such as learning difficulties, behavior struggles, or attention issues. Many parents are left asking: What’s really going on, and how can I help my child? To…
