Ayaz was diagnosed with LGS when he was 17 months old, our lives turned upside down knowing he would never reach his milestones. We tried numerous medications and fortunately were able to find some relief with holistic. Then after three…
The Celebration of Life honors the impact and profound influence of those who have departed from our world. It’s a time to honor our loved ones, whose spirits guide us in our pursuit of cures for LGS. At the LGS…
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. You can…
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…
Peter's LGS Journey
After a traumatic birth, Peter seemed super healthy. At 11 months while driving I looked in my rearview mirror and caught a glimpse in his baby mirror of what looked like an eye roll up to the left. I thought…
