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 …
Grayson’s journey of resilience, love, and life with Lennox-Gastaut Syndrome.
Grayson’s story began like many others—full of hope, excitement, and dreams for his future. But over time, it became clear that his path would look very different from what we once imagined. Just one week before his third birthday, Grayson…
September 25, 2000 – November 19, 2016
Maggie Grace Lyons loved everyone she met. Though she never spoke a word, she said so much with her beautiful blue eyes. She loved being outside—singing, swinging, and spending time with her family. Maggie adored her stuffed animals, especially her…
Kairo’s Journey with Lennox-Gastaut Syndrome
Kairo’s story began on the day of a total solar eclipse, a moment where light and darkness stood side by side. We didn’t know then how fitting that would be for his life. His seizures started when he was still…
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…
October 10, 2002 – March 8, 2019
My daughter, Caitlin Elizabeth Cline, was born on October 10, 2002. She was deeply loved and brought so much light into our family. There are too many memories of Caitlin to count. One of her brothers’ favorites was playing tag…
The Lennox-Gastaut Syndrome (LGS) Foundation and the National Organization for Rare Disorders (NORD) launched a study with global reach to research LGS and LGS-Related Developmental and Epileptic Encephalopathies (LGS-DEE), which are a group of rare diseases characterized by uncontrolled seizures,…
