Patient Advocacy and Engagement Lead, Congenica

Dr Charles Steward is the Patient Advocacy and Engagement Lead at Congenica, a digital health company that assists clinicians and researchers to rapidly understand the genetic basis of rare diseases. He has around 28 years’ experience working with the human genome on the Wellcome Genome Campus, Cambridge UK. He spent 22 years at the Wellcome Sanger Institute, which is where he did his PhD, before moving to Congenica in 2016. During his time at Wellcome Sanger Institute, Dr Steward was a senior member of the Human and Vertebrate Analysis and Annotation team where he led the initial gene analysis and annotation for human chromosome 10 (Deloukas et al., Nature 2004) and established an international collaboration investigating the genomic contribution of early-onset epileptic encephalopathies (Steward et al.,npj Genomic Medicine 2019).

Dr Steward is a member of the Genomics England Participant Panel, UK and the Simons Searchlight Community Advisory Committee in the USA. He is the patron for the Hope for Paediatric Epilepsy (HOPE) – London charity and is also a scientific advisor for the UK Infantile Spasms Trust. He has recently been appointed to the International Cerebral Palsy Genomics Consortium Governance Council whose goal is to have cerebral palsy recognised as a disorder with a significant genetic basis. He is also involved with similar initiatives for preterm birth and is actively working with different groups around the world to achieve both goals.

More importantly, however, Dr Steward is also a carer for his two young children both of whom have severe neurological disorders. He, his wife and children have had their genomes sequenced through different genome studies in the UK, including the Deciphering Developmental Disorders study, the 100,000 Genomes Project and the Next Generation Children study at Cambridge University but nothing has yet been found to explain their challenges.  He is passionate about the impact that patient advocacy and engagement and genomics can have in bringing about positive change for the patient, their families and caregivers.