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2026 Rare Across America

More Than a Meeting: Building Relationships

Have you ever wanted to talk to your members of Congress but weren’t sure where to start? The lessons learned from the LGS Advocates provide an opportunity to take that first step. Every August, lawmakers return to their home states…

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Epilepsy Surgery: What is it?

Individuals of any age who meet the criteria for drug-resistant epilepsy (defined as failure to achieve seizure freedom after using two or more anti-seizure medications) are considered surgical candidates and are eligible for assessment. Epilepsy surgery is complex and differs…

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Surgical Evaluation Process

Finding the right surgery for your LGS loved one takes time and careful planning. The full evaluation process usually takes a few weeks to a few months. While this might feel like a long wait, getting a thorough picture of…

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Finding the Right Surgeon

Is My Surgeon Qualified? All surgeons must be licensed by their state. Some hospitals also require extra certifications. For children, you’ll want a doctor who has specialized training in brain surgery specifically for kids. Brain surgery in children requires extra…

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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…

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Understanding Responsive Neurostimulation (RNS)

What is Responsive Neurostimulation (RNS)? The word “responsive” means this device is smart, it monitors what’s happening in the brain and reacts in real time. The RNS System is a small, programmable device that continuously monitors brain activity. When it…

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Guardianships and Conservatorships

The definition and rules governing Guardianship vs. Conservatorship can vary from state to state; therefore, please seek legal advice for details on your specific state laws and what type of guardianship or conservatorship your loved one will require. A guardianship…

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A Full Heart and a Full Notebook

Reflections from the 10th International LGS Foundation Family & Professional Conference

I came to Orlando as a first-time attendee, still relatively new to the LGS community. I am leaving inspired, hopeful, and more energized about the future of LGS research than I have ever been. Over three days, we laughed and…

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LGS Publication Review – RNS in Children

First published: May 15, 2026

Real-world outcomes of responsive neurostimulation in patients with Lennox–Gastaut syndrome: A multicenter retrospective study Lennox–Gastaut syndrome (LGS) involves several different seizure types and developmental differences, and for most families, the hardest part is that LGS seizures rarely respond well to…

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In Loving Memory of Amaree Brown

August 3, 2009 – August 25, 2023

Amaree Brown was never defined by her diagnosis—she defined everyone who had the privilege of knowing and loving her. From the moment she was born, we shared a bond that words could never fully describe. At just two months old,…

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