Across countries and continents, families affected by the CRELD1 gene mutation are coming together with one shared mission to find answers and build hope for our children.

This condition is extremely rare. In Australia, only two children are currently known to be living with it including our daughter, Edie.

Edie lives with relentless daily seizures. Some days she cannot even get out of bed. Even something as ordinary as a shower can trigger life-threatening status seizures. There are no established treatments not because help isn’t possible, but because research hasn’t been funded.

For rare diseases like CRELD1, families must lead the way.

That’s why we are uniting globally sharing stories, raising awareness, and driving research forward. Read about our warriors and their journeys at https://www.creld1.com and meet the brave children whose lives depend on answers.

We are partnering with Dr Felix Chan at the University of Birmingham, building on research from the National Institutes of Health and Yale School of Medicine. This project will collect skin biopsies to create the first dedicated CRELD1 cell model a crucial step toward understanding the disease and finding treatments.

Our Goal

We urgently need to raise $300,000 to make this research possible.

Why Your Support Matters

Your donation will directly fund:

• Creation of a CRELD1 cell model

• Research into treatment pathways

• Hope for a better quality of life for our children

Families around the world are standing side by side, determined to turn uncertainty into progress. We can’t do this alone but together, we can drive the research that could change everything.

Please donate, share, or fundraise with us.

Every contribution big or small brings us one step closer to answers.

Thank you for believing in our CRELD1 Warrior families and in a future where these children can thrive.