Dr. Katheryn Elibri Frame, CDKL5 Research Collaborative, is a board-certified diplomat of the American Board of Emergency Medicine, and board prepared in Internal Medicine. After completing two residencies and her medical training at Cook County Hospital in Chicago, she was an attending physician at St. John Hospital Medical Center in Detroit and then St. Joseph Mercy Hospital system in Ann Arbor, MI. In 2008, Dr. Elibri’s daughter, Kiera, was diagnosed with the ultra-rare condition CDKL5 Deficiency Disorder. Understanding the scope of the work ahead, she subsequently co-founded the International Foundation for CDKL5 Research, where she served as president from 2009 to 2017. During this period, she drew on her medical and clinical background to help advance basic, translational and clinical research into CDKL5, raise awareness and support families on their journey. Dr. Elibri recently formed the CDKL5 Research Collaborative to re-focus her efforts on advancing cutting edge clinical care and advocacy for CDKL5 disorder.