Rick Upp

Chairperson, CDKL5 Alliance & Deputy President, IFCR

It is my honor to serve as the Chair of the CDKL5 Alliance for the 2018-19 year. I come to the CDKL5 Alliance through the International Foundation for CDKL5 Research (IFCR). I’ve been active in the IFCR since soon after our daughter Olivia’s diagnosis in 2013. I have served on the IFCR board of directors since 2016, currently in the role of Vice President. Prior to joining the board, I served with my wife Cynthia as Regional Family Representatives for the IFCR–US West Coast (Cynthia continues in that role).

Cynthia and I live in Spokane, Washington (US) with Oliva (16) and Isaac (15). Our oldest daughter, Emily (28) is a licensed care provider for Olivia and lives with, as well, as does our other son, Ethan (20) when he’s not in Seattle at the University of Washington. Our other daughter (yes, that’s 5 children in total!), Amanda (26) and her husband also live in Spokane.

Although my education was in French literature (BA, Reed College, 1984; MA, University of Washington, 1987), I have made my career in software sales. I’ve been with the same security software company for over 20 years. One thing that both my career and my involvement in CDKL5 have in common is the opportunity to travel and work with people from many countries. I am pleased to be able to work with so many people who share my single focus: finding treatments and eventually a cure for this condition.