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About Us

Our mission is to treat and cure CDKL5 Deficiency Disorder by funding scientific research, while helping affected individuals and their families to thrive.

The IFCR is committed to funding scientific and clinical research that will bring about treatments and, ultimately, a cure for CDKL5. We strive to raise awareness of this rare disorder within the medical and lay communities.

Above all, we seek to support all CDKL5 families and caregivers, whether newly diagnosed or well into adulthood, by providing the most current information on treatment advances and how to live their best life possible.

Discover Our History

Our Starfish Story

The IFCR has adopted the starfish as the symbol of our organization because it reminds us to keep going and never give up. It was inspired by The Starfish Thrower.

The Starfish Story

Glyn’s Gift

“Are you sitting down?” These are not words a parent wants to hear in connection to their child but this time they heralded some extraordinary news: “We’ve found your gene.”

CDKL5 Origin Story

Lighting the Way

The International Foundation for CDKL5 Research (IFCR) is proud to be the leading patient advocacy organization for CDKL5 Deficiency Disorder (CDD).

We Are IFCR

Our History

The International Foundation for CDKL5 Research began as a group of parents whose children had CDKL5 Deficiency Disorder. We came together and dared to dream of a new future for our children. With education and research, we believe that life-changing treatments can be developed.

In 2009, we incorporated the International Foundation for CDKL5 Research as a non-profit organization. Since then, we have funded ground-breaking research and established CDKL5 Centers of Excellence across the United States.

Mission Milestones

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