Please join us at this online event to celebrate the publication of Helix of Love – a collection of poems written by parents of children with rare genetic conditions who explore the lived experience of rare disease, and reflect on what everyday life is like at a time when so much focuses on the promise of genomic medicine.

The evening will include readings and reflections from the poets themselves, and an informal panel discussion chaired by Professor Bobbie Farsides, Professor of Clinical and Biomedical Ethics at BSMS and Co-PI of the ‘Ethical Preparedness in Genomic Medicine’ (EppiGen) project, and involve contributions from:

Professor Anneke Lucassen, Professor of Genomic Medicine and Director of the Centre for Personalised Medicine at the University of Oxford, Co-PI EppiGen.
Professor Felicity Boardman, Professor of Social Science in Genomics at the University of Warwick.
Professor Somnath Mukhopadhyay, Chair of Paediatrics at the Royal Alexandra Children’s Hospital and Brighton and Sussex Medical School.
Dr Helen Johnson, Principal Lecturer in Psychology and Co-Director of the Centre for Arts and Wellbeing, University of Brighton.
Dawn Gorman, award-winning arts practitioner and poet and creative facilitator of Helix of Love.

Discussions will reflect on the themes raised by the poems in the collection, as well as the relationship between poetry and medicine more broadly. The poets are particularly keen to consider how poetry might help support healthcare professionals to be more ethically prepared for challenging clinical encounters, to highlight the importance that language plays in medicine, and to underline the value of understanding lived experience in order to aid and enhance clinical practice.

Background:

The collection was produced as part of the ‘Ethical Preparedness in Genomic Medicine’ (EppiGen) project, a large collaborative research programme funded by The Wellcome Trust and based at Brighton and Sussex Medical School and the University of Oxford. The project explores the ethical issues associated with the mainstreaming of genomic medicine (the use of an individual’s genomic information, which includes their DNA sequence and any associated genetic variations, to diagnose, treat, understand and perhaps prevent disease and disability) and asks how we might become ethically prepared to meet the challenges posed in this growing area of medicine.

Poets’ reflections :

“I have been both inspired and liberated by this project; finding poetry has given me a whole new way to express myself. I hope through our poems we can show both the clinicians that treat us and other families starting out on similar journeys, that we are not medical curiosities or objects of pity, but ordinary people living and loving rich, multi-faceted lives.” – Alex Davey, mother and poet, Scotland

“New technology enables clinicians and scientists to unravel our genetic code in more detail than ever before. But it can be easy to forget that those genes are just a small part of a whole person. Everyday people like us carry them, along with our hopes and fears for the future. This collection of poems shines a light on what life with rare children is really like. I hope everyone working in the field gets a chance to read it!” – Jillian Hastings Ward, patient advocate and mum

“I have loved being a participant in this poetry project and have especially enjoyed reading the poems of my fellow creatives. I feel that this collection is a snapshot on our lives, it is a journey in which you can follow our footsteps. I hope that in sharing our lives on paper that it might help change clinical practice and make decision makers more thoughtful of disabled people in their plans and projects. We can only hope.” – Lorna Fillingham, mum, campaigner &, it seems, occasional poet.

“At the time the poetry workshops took place I was at the start of a period of therapy, which was much needed to help me process all of the things that had happened since realising my daughter was not developing typically, and to rediscover, and make time for, the parts of me that had got lost along the way. It was invaluable to meet with people who had similar experiences and see that the same themes emerged for them. Such as finding yourself on a path you weren’t expecting, and feeling overwhelmed by all you have to carry. I hope that in reading this collection that clinicians and other professionals gain some insight into the complexities of life with a child who has a rare condition and that other families living lives like ours will feel understood and a little less alone.” – Jo Wright, mum and advocate.

Advance praise:

“This collection is so moving and true! It shows what poetry can do, and why the genetic story is incomplete unless it includes life itself.” – Professor Tom Shakespeare, London School of Hygiene & Tropical Medicine

"Helix of Love is an inspirational collection of poems written by parents who share their hopes, fears, laughter, tears and above all love for their amazing children who live with rare genetic conditions." – Louise Fish, Chief Executive, Genetic Alliance UK

“This collection of extraordinary poems is a real triumph: vivid, heart-wrenching and hopeful. It's a must read for anyone involved in designing services for or supporting children and families with rare conditions.” – Dr Richard Scott, Chief Medical Officer and Deputy CEO, Genomics England

“Research outputs come in all shapes and sizes. There is more than one way to describe and delineate the experiences, unique and common, of parents of children with rare genetic conditions. Journal articles, books, conference presentations are all important - essential even - but this extraordinary and effecting collection demonstrates the power that literature - poetry in particular - can have in shining new and sometimes astonishing light on the uncertainties, anxieties and above all acts of love, that these families chose to share with us.” – Dr Dan O’Connor, Head of Research Environment, Wellcome Trust

A Helix of Love: book launch