Matthew's Journey with Lennox-Gastaut Syndrome
Matthew entered the world during a long birth. Intervention was needed, and the use of forceps resulted in a hematoma that thankfully diminished over the weeks following. He was a beautiful, healthy, happy baby and we were sent home with…
Nyla's Story
While in utero, Nyla had a fetal ovarian cyst that grew to almost 2 inches throughout the pregnancy. The solemn and uncertain look on the doctor’s face when he saw it made my heart sink and I was overcome with…
The Advocates for LGS team is a small but dedicated group of caregivers who recognize the need for change at the systems level to provide a brighter future for their loved one with LGS. Every August during the congressional summer…
William (age 10)
My name is William and I am 10 years old. I am in the 5th grade and enjoy school. I like video games, drawing, and geography. I live in Florida with my Dad Craig, Mom Kayleigh, Brother Dylan, and two…
Our community is stronger with facts! When it comes to CBD (cannabidiol), do you know fact from fiction?
Cannabidiol (CBD) is an exciting focus of medical research, popular media, and legislation related to cannabis. Its presence is becoming ubiquitous on the shelves of health food stores and search engine results for numerous medical conditions, but don’t believe everything…
December 6 - 10, 2024
Thank you for joining us in Los Angeles for the 2024 American Epilepsy Society (AES) Annual Meeting. Increased awareness and recognition positioned LGS as a mainstage topic at this years meeting where world-renowned experts in the field gathered to learn…
Ayaz was diagnosed with LGS when he was 17 months old, our lives turned upside down knowing he would never reach his milestones. We tried numerous medications and fortunately were able to find some relief with holistic. Then after three…
The Celebration of Life honors the impact and profound influence of those who have departed from our world. It’s a time to honor our loved ones, whose spirits guide us in our pursuit of cures for LGS. At the LGS…
Meet Dominic
My name is Jackie and I am the proud mother of an LGS warrior, Dominic, who is 11 years old. Dominic loves swimming, Legos, Superheroes, playing soccer, and Minecraft. Dominic experienced his first seizure when he was 3 years old….
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….
