Looking Forward – Involving young cystic fibrosis patients in developing an educational arts package exploring gene therapy
Nowgen, A Centre for Genetics in Healthcare has recently received a People Award grant from The Wellcome Trust for a project called Looking Forward which will engage young Cystic Fibrosis patients in making an educational arts package exploring CF and gene therapy.
Cystic Fibrosis (CF) is one of the most common genetic conditions in the UK, affecting approximately one in 2500 people. Many patients with other genetic conditions belong to patient support groups who regularly meet socially. However, patients affected by CF cannot meet up in person due to a high risk of infection – their opportunities to debate latest scientific research related to their conditions, and its implications, are therefore currently limited.
Gene therapy is often heralded as a potential future treatment for CF and first phase clinical trials are underway in the UK. Despite the frequent news headlines reporting continuing progress, the consistent and effective future use of gene therapy remains only a possibility.
Looking forward will comprise a team of young CF patients with clinicians, artists, scientists, educationalists and an adult patient. As well as staff from the Nowgen Public Programmes Team, collaborators include a panel of artists from LimeArt, Dr Kevin Southern, University of Liverpool; Lynsey Morton, CF Trust; Amanda Smith , Science learning Centre North West; and we hope to work with the UK CF Gene Therapy Consortium.
This team will use creative approaches to develop an educational arts package, exploring CF and gene therapy: the science, the misconceptions and the personal and social issues associated with this field of research. The package will be developed in a participatory and audience-led manner, using film, animation and writing media. Importantly, this project will explore methods of participatory engagement with individuals who cannot meet face-to-face (the CF patients). The resulting package will be disseminated widely to a range of audiences including other young people with CF, teachers and students, health professionals, and families who have recently received a diagnosis.
