Mr. T (aka Theo)
Theo is my favorite topic of conversation. The word that comes up first whenever I talk about him is sweet. He has a gentle, calm nature and the world’s best smile. I could hug him and smother him with kisses…
Latest News
Meet Olive
Our little unicorn
I’m a mom of four and my sweet Olive is our rainbow baby and our little LGS warrior, who is now four years old. She was a healthy newborn who underwent cardiac arrest at three months old and had anoxic…
Caleb Keeps Smiling
Caleb was born with bilateral club feet. We knew about the club feet and had a plan in place before he was even born. Caleb had his 1st set of casts on at 5 days old. At 3 months old,…
A Mother’s Unwavering Love
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…
Finding Joy in Our LGS Journey
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…
Rare Across America 2024 – Advocacy in Action
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…
Sibling Spotlight
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…
Stamp Out CBD Myths!
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…
LGS Foundation at the AES Annual Meeting
Thank You for Connecting With Us at AES 2025 Thank you to the clinicians, researchers, industry partners, and advocates who stopped by Booth N756 and helped elevate Lennox-Gastaut Syndrome at the 2025 American Epilepsy Society Annual Meeting. AES 2025 reinforced…
Our blessed angel – Ayaz
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…