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…
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,…
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…
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…
Our 2nd Biennial LGS Research Meeting of the Minds was an Overwhelming Success! Watch the short recap video from our Executive Director, Tracy Dixon-Salazar, PhD Over 150 people attended this two-and-a-half-day hybrid research meeting in Baltimore, MD to discuss…
Help Raise LGS Awareness This November!
Our Mission: To raise awareness for the more than One Million children and adults worldwide living with Lennox-Gastaut Syndrome! YOU are a part of something BIG, and your efforts make a BIG impact! Please join us in raising awareness for…
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…
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…
