Welcome to Stella Strong
This is more than just a website—it’s a movement powered by hope, science, and one unstoppable little girl.
At Stella Strong, we share updates on Stella’s journey while shining a spotlight on the urgent need for progress in CDKL5 Deficiency Disorder and other rare diseases. Our mission is simple but bold:
To raise awareness, fuel research, and drive funding toward treatments—and ultimately a cure—for Stella and the millions of others like her who are living with ultra-rare, underfunded genetic disorders.
Because every child deserves a future full of possibility.
Whether you're a researcher, donor, advocate, or just someone who cares—you have a place here. Explore, learn, and join us in fighting for breakthroughs that can change lives.
💜 Be part of the cure. Be part of Team Stella.
🔗 Learn About CDKL5
🔗 Support the Cure Rare Foundation
🔗 Follow Stella’s Story
JOIN OUR FIGHT
Currently Stella — and most other CDKL5 kids — suffer from daily seizures.
Since her first seizure on April 13, 2020, Stella has endured more than 500 seizures—each one a disruption to her growth, comfort, and quality of life.
Our goal is simple: to give Stella as many “zero seizure” weeks as possible. Every day without a seizure is a day her brain has a chance to learn, connect, and heal.
All of Stella’s doctors and therapists agree—reducing seizure activity is the most critical step we can take to support her development and give her the best chance at independence. That’s why we are fighting relentlessly: adjusting medications, exploring cutting-edge therapies, and researching every option with a team that believes in her potential.
Because every seizure-free day is a step closer to a future filled with possibility.
Stay connected to
Team Stella Strong.
Sign up here to keep informed on how Stella is doing and our progress toward finding rare disease cure advancements.