Rick Upp
Chairperson, CDKL5 Alliance & Deputy President, IFCR

As Vice President of the International Foundation for CDKL5 Research, I serve as the IFCR's representative to (and past Chairman of) the CDKL5 Alliance. The Alliance is an organization that brings together patient advocacy groups and related organizations from around the world. At home, my wife Cynthia and I are parents to Olivia, our 18-year-old daughter with CDKL5, who lives with us (alone with 3 of our 4 other children) in Spokane, Washington. While I have no medical training, I have 18 years of experience in raising a CDKL5 child, advocating for her needs, and sharing her daily struggles and joys. In the "real world" I've worked in the software industry for over 30 years, holding a number of titles. But none has been as rewarding as "Olivia's dad".