The Latest in LGS Research - July 2024
While there are no cures for LGS, current LGS Foundation-funded researchers are focused on two areas where their efforts can lead to improved lives for those with LGS and their families. One of these areas is seizure control and another…
This page offers a list of FDA- approved treatments often used in those with LGS. Not all medications used in LGS are listed here. This list reflects U.S. FDA-approved medications. For info on epilepsy treatments in the U.K. visit this…
The Celebration of Life is a special occasion to reflect on the impact left by those who have departed and to honor their profound influence on our world. It’s a time to commemorate the enduring spirits of our loved ones,…
Meet Dominic
My name is Jackie and I am the proud mother of an LGS warrior, Dominic, who is 11 years old. Dominic loves swimming, Legos, Superheroes, playing soccer, and Minecraft. Dominic experienced his first seizure when he was 3 years old….
LGS is a lifelong developmental brain disorder and frequent, debilitating seizures are the main feature. Therapies may help, however, in most cases, they do not completely stop seizures. Seizures often change in children with LGS as they grow and develop….
Olivia's LGS Journey
Our warrior Olivia is 21 years old. Olivia started experiencing seizures just before her second birthday. After over a decade of uncontrolled seizures, we needed help and decided it was time for another opinion. Olivia’s new doctor ordered a complete…
07/17/1997 - 05/11/2024
Megan was lovingly known as “doubly rare”. She lived with the rare epilepsy syndrome Lennox-Gastaut Syndrome, secondary to her rare genetic anomaly, PURA Syndrome. Megan had the sweetest soul, her smile and soft presence impacting all who knew her. She…
For Children Two-Years of Age and Younger
The Jazz Piccolo Study (Piccolo means “little one” in Italian) is investigating the safety and effectiveness of cannabidiol (or CBD oral solution) in infants (2 years of age and younger) with Tuberous Sclerosis Complex (TSC), Lennox-Gastaut Syndrome (LGS) or Dravet…
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…
Rare Disease Week 2024
Every year on the last day of February, the rare disease community unites as one to observe Rare Disease Day. February is a rare month with only 28 days and this February was ultra rare with the extra day, February…
