A Clinical Study for Children and Adults with Lennox-Gastaut Syndrome
The LGS DISCOVER study, also identified as the YKP509C003 study, is a clinical trial for pediatrics and adults with Lennox-Gastaut Syndrome (LGS). The LGS DISCOVER study will evaluate whether an investigational medicine called carisbamate, when given along with other anti-seizure…
December 4–8, 2026 | Denver, Colorado
The LGS Foundation is heading to the 2026 American Epilepsy Society (AES) Annual Meeting! Visit us in the exhibit hall at Booth N115 to connect with our team and learn how we’re working with researchers, healthcare professionals, and partners to…
It was a cold, snowy day, in Jan 2010. Brock was 3 years old when he fell backward, hit his head on the dresser, and began seizing. In the ER, the physicians believed he passed out due to his sugar…
My daughter Olivia was diagnosed with the most severe form of life-threatening epilepsy in November of 2021, Lennox-Gastaut syndrome. This was a known possibility since she experienced a severe traumatic brain injury at birth resulting in seizures that evolved into…
7/31/1976 - 5/08/2023
Allison was diagnosed at Johns Hopkins Kennedy Institute in 1978 at 18 months old. She had numerous seizures of every type. Through all of the difficulties, she remained sweet and playful, laughing uproariously at sounds like sneezes, coughs and hiccups….
11/07/2017 - 11/30/2022
When Daniel was approximately 4 months old, we noticed that he was not meeting all of his developmental milestones. Around this same time, Daniel was hospitalized and diagnosed with Infantile Spasms. This was the first of many hospital stays to…
Rare Disease Week on Capitol Hill
On the last day of February every year, we pause to honor those who are living with, or have passed away from, a rare disease. The last day of February after all, is the rarest day of the year. It’s…
Help Us Find Better Treatments and Cures for LGS
What is a Learn from Every Patient Database? Implemented in 2023, the LGS Learn from Every Patient Database collects medical records about those with LGS to document the impact of LGS on a person’s health over their lifetime. You can…
2008 to 2023: 15 Amazing Years of Progress!
Nobody Walks the LGS Journey Alone Formed in 2008, the LGS Foundation has since grown into an internationally recognized nonprofit organization that is improving the lives of those impacted by LGS through advancing research, awareness, education, and family support. The…
Hi, I’m Alejandra, Andrea’s mother, my beautiful angel who had a normal childhood until she was seven years old. I still remember waking up and hearing the sound that my little Andrea emitted, I thought she was drowning when I…
