For families living with Lennox-Gastaut Syndrome (LGS), every day can feel like a battle against the unpredictable. New research is moving beyond traditional surgery and heavy prescriptions, opening a path toward non-invasive options that could fundamentally change how we treat…
Accelerate Research. Change Lives.
The LGS & Associated DEE Research Accelerator brings industry, academia, and patient advocacy together in a pre-competitive environment — eliminating duplication and moving the needle faster for those living with LGS and related Developmental & Epileptic Encephalopathies (DEEs). Member Benefits …
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…
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…
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…
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…
