NightWatch+ is a nighttime seizure detection device. Seizures during sleep can be especially challenging to monitor for caregivers. This device focuses on detecting the seizure types most associated with serious harm and Sudden Unexpected Death in Epilepsy (SUDEP) risk. Types…
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…
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 …
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…
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…
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…
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…
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…
