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…
Stepping Towards the Cures, Together!
Each year, hundreds of community members mobilize for our Walk ‘n’ Wheel to raise awareness of Lennox-Gastaut Syndrome and raise crucial funds for the LGS Foundation’s “Finding the Cures, Together” Research Program. With only a tiny fraction of public and…
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,…
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…
