August 26, 2021

At 20-months old, Samantha Utley was the first CDD patient her doctor diagnosed with the disorder. Overwhelmed with nothing but a short paragraph on the disease, Samantha’s mother Karen joined a small group of parents in founding the International Foundation for CDKL5 Research (IFCR).

The ultimate Frozen-fan, Samantha has struggled with seizures, vision impairment, gastrointestinal complications, and insomnia over the years. However, what Karen wants most is to give her daughter a voice.

Dedicated to improving the lives of children like Samantha, IFCR has established CDKL5 Centers of Excellence across the U.S. to bring specialized care to families. Karen and her team continue to lead the charge in CDD patient education.