Latest News

In Memory of Megan K. Overfield

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…


The Jazz Piccolo Study

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…


The LGS Foundation Advocates Return to Washington, D.C.

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…


LGS Foundation Welcomes New Board President

  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,…


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…


Can anything good come from this LGS life? The answer for me is… Yes!

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…


3 Takeaways from the Recent AES Annual Meeting

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…


The Meeting of the Minds Blew Our Minds

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…


International LGS Awareness Day & Epilepsy Awareness Month

Help Raise Awareness of LGS 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…


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…