Charlie Steward is a genome scientist, a dad to 2 children with rare diseases, and an incredible advocate.

He spent more than 2 decades working on mapping the human genome. It was important work and a passion for him, but when his daughter Imogene was born it became personal.

Shortly after her pre-term birth, Imogene was diagnosed with a catastrophic and potentially fatal form of epilepsy, and a short time later with cerebral palsy. Several years later, her little brother, Jasper, was also born pre-term, suffered severe brain damage and was also diagnosed with cerebral palsy.

Charlie’s story weaves together the intellect and brilliance of science with the emotion and heartache of being a dad to 2 special needs children.

He may be the smartest person I’ve ever had a conversation with, but talking to Charlie is like spending time with a comfortable old friend. He shares with us the vulnerable, human side of his life – what a perfect day looks like with his family, and what his hopes and dreams are for his children. And he very gently explains the advances of and the hope in science, as well as the limitations and the acknowledgement that we still have much to learn.

Charlie is now the patient advocacy lead for Congenica, a digital health company that is focused on improving lives by rapidly converting genomic data into usable information for patients and their doctors.

His story is fascinating and filled with heart, hope and love.