Keep Rockin’ Cleveland 2024 Conference - Join us June 13th-15th - Learn more and register at this link.

Rick Upp

Vice President

Cynthia and I are parents to Emily (32), Amanda (30), Ethan (25), Olivia (21), and Isaac (19). That’s right, five kids, which makes us the 7 Upps. We live in Spokane, WA. I have a Bachelor’s degree in French from Reed College (Portland, Oregon) and a Master’s in French from the University of Washington (Seattle). Somehow, I ended up in the high tech industry, where I have been working for 30 years. Between formal education, work, and volunteering for a variety of organizations, I’ve developed skills in communication, negotiations, partnering, organization, and problem solving (and, of course, technical skills). It takes all of those skills to help the IFCR defeat the monster that first raised its head when our Olivia was only two months old.

Although Olivia had her first spasms at two months, it took another 10 years before a specialist in Seattle was able to determine that she had CDKL5 Deficiency Disorder. Learning that has changed nothing and everything. Nothing, because it offered no new treatment or cure. But it changed everything because now our enemy had a name, and we had a new focus. Our mission from that day forward has been to defeat CDKL5. We were so excited to find the IFCR and the support group on Facebook. I have been honored to be on the Board of Directors of the IFCR since 2016. I am so encouraged to be able to work together with such an amazing group of parents and incredible leaders to take on this terrible condition. I know together we will prevail! Our sweet angels are depending on it.