Meet Charlie
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…
Meet Jackson
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…
Mason is proof that “rare” doesn’t mean impossible!
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…
Powering Breakthroughs: Tackling The 3 Grand Challenges in LGS
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 Publication Review – Vagus Nerve Stimulation Therapy
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…
LGS Publication Review – EEG Functional Connectivity
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 Survey of Adult Caregivers of People with DEEs
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…
Together, For a Breakthrough!
Your generosity fuels breakthroughs!
This holiday season, we’re inspired by the courage of those living with Lennox-Gastaut Syndrome: SUPERHEROES who face enormous challenges with strength and resilience. With your support, we will advance new LGS therapies, treatment guidelines, non-invasive deep brain stimulation methods, and more….
Disease Management
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…
Daily Living
The Daily Living section equips caregivers with practical, everyday support strategies. It outlines personal care tasks – such as bathing, toileting, and similar routine activities – and explains how to determine if home health services might best support your loved…