Amanda Jaksha


My oldest daughter, Ava, was seven months old when noticeable seizures came roaring into her life. We spent many tumultuous years dangling from a string while managing refractory epilepsy and chasing evidence that might explain her elusive neurological condition. After six years of guesstimating, an answer came in the spring of 2012 that named the culprit in Ava’s complex medical puzzle. Her neuro-metabolic team had finally identified the small deletion in her CDKL5 gene. It was liberating to have a diagnosis and delightful to find the International Foundation for CDKL5 Research in existence.

I earned my Bachelor of Science in Business Administration with an Accounting concentration from Colorado State University, and my family still calls Colorado home.  I am passionate about patient advocacy in both policy and health outcomes. On rare occasions, I take my CDKL5 hat off, and provide consulting services in various capacities. I am also a certified nurse aide; this allows me to provide direct care to Ava as an employee of a large home healthcare agency. You can find me volunteering at the Children’s Hospital Colorado CDKL5 Center of Excellence, representing the IFCR, a duty I adore. In unity, we will realize a brighter tomorrow that includes evidence-based clinical care and treatment options – ultimately, a cure. I embrace the spirit of perseverance; together, we can conquer CDKL5 Deficiency Disorder.