Protected: Community Needs Survey
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Protected: LGS & Associated DEE Research Accelerator
Accelerate Research. Change Lives.
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2026 Rare Disease Week on Capitol Hill
Why Showing Up Matters
Every year, patient advocates, caregivers, and researchers from across the country travel to Washington, D.C. to attend Rare Disease Week on Capitol Hill, organized by the EveryLife Foundation for Rare Diseases. They bring one shared goal – to make sure…
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…
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…
Advancing LGS Research at AES 2025
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…
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….
Dreaming of Better Sleep with LGS
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…
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…