25/09/2026
Meet Cynthia Upp, IFCR’s Family Support Representative for the Northwest! 💜
“My husband, Rick, and I are the proud parents of five children, including our daughter Olivia, who has brought an immeasurable amount of love, perspective, and joy into our family.
Olivia’s journey began in 2002, but we did not receive her CDKL5 diagnosis until her 13th birthday. For 13 years, we navigated the unknown largely on our own—without a diagnosis and without a community of families who truly understood what our lives looked like.
Her diagnosis changed that. Suddenly, we were connected to an incredible worldwide CDKL5 family. For the first time, we were able to walk this journey alongside others who understood the challenges, questions, celebrations, and extraordinary love that come with raising a child with special needs.
That experience is a big part of why serving as the Family Support Representative for the Northwest means so much to me. It truly takes a village to raise a child with special needs, and doing this journey alone can make an already difficult road even harder.
I love being able to connect families, bring people together, share resources, and simply be there for someone who needs to talk with a person who understands. My hope is that no CDKL5 family ever feels like they have to navigate this journey alone.”
Cynthia’s journey also reflects the lasting impact Olivia has had on their entire family. Olivia’s siblings have grown up embracing, protecting, and caring for her, and their close relationship is a remarkable source of love and strength. Today, Cynthia’s oldest daughter, Emily, is one of Olivia’s caregivers—support that allows Cynthia to continue serving CDKL5 families throughout the Northwest while remaining active in her local community and career as a Realtor.
We are deeply grateful for Cynthia’s compassion, advocacy, and dedication to helping families find the community and support system she once needed herself. 💜
