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….
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…
We are delighted to welcome Karen Groff as the new President of the LGS Foundation Board of Directors. Karen is a retired educator and long-time member of the LGS Community. As a teacher, elementary principal, and staff development coordinator,…
By Darla Davison
This is a question I’ve asked myself many times over the years. Through the constant ups and downs and watching my son, Aaron (age 35), suffer for decades, my answer has varied. In the end, I can see that my…
The recent AES Annual Meeting brought together more than 6,000 healthcare providers, scientists, patient advocates, industry partners, and other professionals dedicated to better outcomes for people with epilepsy. It was really energizing to attend this meeting and hear about all…
Help Raise Awareness of LGS this November!
Join Us In raising awareness for the more than one million children and adults worldwide living with LGS! YOU are a part of something BIG, and your efforts have a BIG impact! Therefore, join us in raising awareness around International…
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…
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 to Illuminate! November 1 as part of the many…
