About Us

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 a life-changing cure can be found.

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


To see all we have accomplished, view our timeline.


Our Mission

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 research, both scientific and clinical, 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.