I was born with a rare genetic sight condition (Microanophthalmia) which means that I have severe sight impairment. This has resulted in my losing the remainder of my working vision in 2015 / 16.
I joined the 100,000 Genomes Project in 2017 and from this, I joined the Participant Panel at the Genomics England Limited. I have had the opportunity to work on a variety of projects, and I was asked to be the Accessibility Lead to the Participant Panel in 2024. This has included working on a Language Guide aimed at supporting clinicians and researchers when interacting with patients and the public.
In January 2022, I was appointed as the Chair of the Patient & Public Voice (PPV) Panel for the North West Genomics Medicine Service Alliance (GMSA). This work has allowed me to support and evolve the patient 'voice' for the provision of genomics medicine across the North West region. I have also had the opportunity to lead on a number of projects including an audit of existing examples of online information products for patients and the public. From this, our panel hopes to develop a set of national communications principles which everyone can be encouraged to use, when developing new or updating existing online materials.
In April 2024, I was diagnosed with incurable metastasizing esophageal cancer which I've since written a song about my experiences. This song 'The A, the C, the G, the T' aims to raise public awareness of the breakthroughs and benefits of genomics medicine e.g. chemotherapy and immunotherapy and how this keeping me alive.