This Summer, make a splash for CERT1! 💦

If you are here, you know and love a CERT1 someone! We are inviting all CERT1 (CerTra Syndrome) families and friends to raise awareness and the critical funds needed to accelerate treatments—by enjoying a day of something all of our kids love… water!

⚡️ Create your own personalized fundraising page right here:
1️⃣ Select “Create Your Page” above
2️⃣ Sign up with your CERT1 someone’s picture & name (Or create a team name)
3️⃣ Set your goal & share your story
4️⃣ Customize your URL
5️⃣ Add the URL to your social media profiles & spread the love!
⚡️ Keep it simple: share your CERT1 journey in daily social media stories
⚡️ Host an event (think: birthday party with purpose!) at your pool, beach, backyard sprinklers, splash pad or wherever your CERT1 someone loves to get wet!

We’re here to support you in making a SPLASH that helps cure our CERT1 someones! Every drop counts!

Much love,

The Lottie’s Light Foundation leadership and volunteer team

About the CERT1 gene 🧬

Children with CERT1 gene mutations face a range of complex challenges, including epilepsy and significant developmental delays. We refer to these mutations to the CERT1 gene as CerTra Syndrome. The result is that early cognitive, physical, and emotional development are affected to greater or lesser degrees, depending on the mutation. With these mutations sharing a loss of function characteristic, we are targeting treatments through small molecules and antisense oligonucleotide therapies.

About Our Rare Disease Kids 🦄

Some say our kids had a better chance of winning the Powerball than being born with a neurodevelopmental genetic mutation. Some in the medical community call our kids "unicorns."

Unicorns are rare, magical, pure and innocent. That sounds a lot like our kids.

Being so rare creates a huge challenge for our children, and historically has made developing treatments for rare disease impossible. But TODAY THINGS are different, with breakthroughs in research, personalized medicine and tools like AI, we can diagnose, study and treat disease quicker and cheaper than ever before. However, with such a small population size there is not a compelling case for investors to focus on diseases like CERT1. That is where we as a community and a patient advocacy group jump in! Keep reading!

About Lottie’s Light Foundation 🕯️

Lottie’s Light Foundation is a nonprofit organization committed to illuminating a cure for CERT1 - a nano-rare, severe condition affecting brain development that currently lacks any available therapies.

Since our official launch in October 2024, Lottie’s Light Foundation has been quickly building the foundation to expedite therapeutic development for CERT1 patients. We’ve built a team of brilliant researchers and scientists from CombinedBrain, Columbia University, EPFL (Lausanne, Switzerland), Orphan Disease Center, and more in the works. All with a shared goal to support the quick development of a cure for CERT1.

Along with a strong research team, we are committed to building a strong network of support for CERT1 families across the globe. As of July 2025, we have located 21 CERT1 patients globally, with 12 of those living in the United States. But there are many more patients with a CERT1 diagnosis who think they are the only one, and many, many more who have yet to get a diagnosis. We are working to fix that through multiple projects, including partnering with great diagnostic companies like GeneDx.

CERT1 Splash Research Fund Goal 🐁🧫🔬

Our goal is to raise $50,000 USD to fund research assets that our lab partners can use to screen and test therapies on our disease.

Fibroblasts ($2,000 each) skin cells we can easily collect and use as a starting point to study how CERT1 affects our children at the cellular level
iPSCs ($22,000 each) special cells made from fibroblasts that can be changed to brain cells, helping our researchers model the disease in the lab and discover treatments.

Thank you for supporting CERT1 Splash and Lottie’s Light Foundation, and being part of our journey to illuminate a cure for CerTra Syndrome/CERT1!

CERT1 SPLASH 2025

Our Global Community Fundraiser For a CERT1 Cure

Team Members