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…
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…
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,…
Our Superhero, Dylan
Dylan is a 16-year-old, smart, sassy, and energetic young man. He loves all things superheroes and is dedicated to keeping his friends and family safe with his superpowers. Dylan made his grand entrance into this world on New Year’s Eve…
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…
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…
LGS Foundation Celebration Of Life Butterfly Release
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…
Finding international support for my LGS loved one
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….