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Karen Utley

President & Co-Founder

On July 2, 2008, my life took a major turn with receiving a CDKL5 Disorder diagnosis for my daughter. Samantha had her first seizure at 10 weeks of age, and she was diagnosed at 20 months. As soon as I had a diagnosis, I knew that I had to be proactive to help make a difference. As a founding board member and officer, volunteering gave me a sense of control in an out-of-control situation. I served as treasurer for 8 years, and in 2017, I transitioned to the president. Through these years of serving the IFCR, I have learned the importance of building partnerships and being a strong advocate for rare diseases. I am honored to serve in leadership roles for the ELC (Epilepsy Leadership Council) and REN (Rare Epilepsy Network). I am also active with rare disease organizations such as NORD, Global Genes, and EveryLife Foundation. These experiences have ignited a passion in being a strong advocate for our community. In addition, being a support system for other mothers and families of those affected by CDKL5 is a priority. Firmly believing that a cure is possible, I have earned a bachelor’s degree in nursing. As I gain knowledge in the areas of science and clinical care, I hope to use it to improve the lives of those diagnosed with a CDKL5 Disorder.