Join the Fight for a CDKL5 Cure

Hi, my name is Ethan Slavin, and I’m a student at the University of Michigan. I started the CDKL5 Deficiency Disorder Awareness Club on campus because this isn’t just a cause to me—it’s personal.

My younger sister, Georgia, was diagnosed with CDKL5 Deficiency Disorder (CDD)—a rare and severe neurological condition caused by mutations in the CDKL5 gene—when she was just a baby. From that moment on, my family entered a world of uncertainty, underfunded research, and a heartbreaking lack of awareness.

CDD causes early-onset, difficult-to-control seizures, severe developmental delays, and an overwhelming set of medical needs. The lack of public knowledge and research funding means slower progress and fewer treatments, and families like mine are left to navigate this complex journey with limited support.

I founded the CDKL5 Awareness Club at Michigan to give families like mine a voice—to raise awareness, educate others, and fundraise for the groundbreaking research that could change lives. Since launching the club, we’ve organized speaker events, info tables, and outreach campaigns across campus—but we want to do more.

That’s where you come in.

Your donation will help us by contributing directly to CDKL5 research through the International Foundation for CDKL5 Research (IFCR)

Every dollar is a step closer to treatments, support, and hope. For my sister—and for so many others—thank you for helping us fight for a brighter future.

With gratitude,

Ethan Slavin

Founder & President, CDKL5 Deficiency Disorder Awareness Club at the University of Michigan