Mighty Member since August 2018
Karen Utley is the president and co-founder of the International Foundation for CDKL5 Research, a patient advocacy organization. Her daughter received a diagnosis of CDKL5 Deficiency Disorder at the age of 20 months. Upon diagnosis, there was no information about this debilitating disorder. She and 6 other moms combined their strengths and talents to ensure no other family would receive this diagnosis and feel lost and alone. Her experience in rare disease has led to collaborative efforts to improve knowledge, patient care, and advocacy. Through years of watching her daughter suffer from seizures, apraxia, gastrointestinal issues, and many other health challenges, Karen has developed a passion for science and healthcare. She is pursuing a Bachelor of Science in nursing, as well as continuing to educate herself in advocacy and leadership in the non-profit world.