Lennox-Gastaut Syndrome (LGS) has no cure. Although current treatments may help reduce the number of seizures, none are expected to eliminate them entirely; these treatments are palliative. The main treatments include anti-seizure medications and some surgical approaches. While both types…
Andrew's LGS Journey
Andrew is our first child. I always point that out because I was in such a different place then. A place where I did not question, I did not really think about what happens when a baby is born with…
9/10/1989 - 12/26/2023
Jille was a beautiful red-haired green-eyed baby girl. She was diagnosed with infantile spasms after having major brain surgery to remove an encapsulated cyst. The seizures did not respond to the medications available at that time. Eventually, she was diagnosed…
3/07/2005 - 1/04/2022
Matthew Jason Parham was born on March 7, 2005. Matthew (also known as Matt, Matty, and Bubba), came into this world like most babies, with strong lungs, tiny fingers and toes, and nothing but wonder and curiosity for the world…
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…
5/9/1976 - 11/19/2017
On May 9, 1976, my brother Mark was born, it was Mother’s Day that year. Being an adopted child at that time, it wasn’t until about a week later that my parents knew of his birth and that he would…
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…
4/22/1974 - 4/26/2022
Weeks beyond his expected due date, our amazing son Tad was born and together as a young family we took our first steps on a remarkable journey, a life most people could not imagine. A path of lifelong education of…
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…
1/29/1993 - 7/13/2018
Joshua was diagnosed at 9 months with LGS he had seizures daily and other medical issues. Joshua was a joyful child he loved music, being outside, and enjoyed being with mommy and daddy. He was in the bell choir for…
