In Memory of Joshua Paul Keller
Joshua was diagnosed at 9 months with LGS he had seizures daily and other medical issues. Joshua was a joyful child he loved music, being outside, and enjoyed being with mommy and daddy. He was in the bell choir for…
Meet Emma
Emma was a few weeks shy of her 17th birthday when she had her first seizure. It all started with 3 tonic-clonic seizures, and by the end of that week, she was having a myriad of seizure types. Emma suffers…
LGS Advocates are Raising Their Voices
Written By: Jennifer Griffin, Director of Family Support Just 6 months after we took the nation’s capital by storm for Rare Disease Week on Capitol Hill, the LGS Advocates were at it again in their local communities as part of…
Illuminate for LGS – Locations Around the World Light Up for LGS Awareness
The LGS Foundation continues to shine a light on Lennox-Gastaut Syndrome as we Illuminate for LGS. Promoting awareness and an understanding of what matters to LGS families. You Can Join Us! Each November, as part of the many awareness initiatives…
Discovering Breakthroughs and Innovations in LGS Research
Over the past five years, LGS research has experienced significant advancements, providing hope for individuals and families affected by this complex disorder. At the LGS Foundation, we know that patient-driven research plays a vital role in driving research on topics…
Financial Resource Toolkit for LGS Families
The following list contains links to third-party websites. The LGS Foundation is not responsible for the content or privacy policies of these external sites. While we try to only list sites here that we feel contain useful information for our…
LGS Learn From Every Patient Database
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. This information…
The LGS DISCOVER Study
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…
Meet Brock
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…
Meet Olivia
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…