Rare Disease Researcher collaborates with artist for Cambridge RareFest

CNGG researcher, Dr Samuel Chawner attended the Cambridge RareFest, an event which brings artists and researchers together to showcase the experiences and journeys of those affected by rare genetic conditions.

Sam was invited to participate due to his work on the IMAGINE-ID study, which has gathered developmental and mental health data on over 2500 children living with rare genetic conditions, uncovering the impact on cognition, communication, social ability, motor function, mood, anxiety and sleep functioning.

Sam collaborated with artist, Nadia Koo on a ‘Life Genomics’ piece, depicting a child affected by chromosome deletion which was exhibited at the event. This process involved a few video calls where Sam was able to discuss his research into children with rare genomic conditions. From this, Nadia was able to draft the artwork and refine it before finally exhibiting it at Cambridge RareFest. The artwork (shown above), uses bold and lively colours to show a child whom upon closer inspection, is living with a rare genetic condition.

Nadia said, “Although I have depicted chromosomes and genetic code in the painting, the viewer sees the child first, before considering the full impact of symptoms that can include bad mental health, sleep disorders, psychosis and eating disorders. Children with rare genomic conditions shouldn’t just be seen as their medical condition but as children who live life to the full like any other child.”

Reflecting on the success of the event, CamRare Managing Director, Jo Balfour said, “It’s been wonderful to see such brilliant collaborations emerge from the ART-TRAnslations project over the year. And particularly special to see the artists, researchers and their wonderful artwork on show at #RAREfest24 this weekend." Congratulations to Sam and Nadia on their impactful piece.

• Take a look at more artwork from the exhibition
• Check out more of Nadia’s artwork on her website