I am a charity professional with over 20 years’ experience in the third sector primarily leading small and medium sized health charities. My work has focused on service design, outcome monitoring, fundraising, strategic planning, change management, governance and campaigning.
Throughout my career, I have placed particular emphasis on the importance of public and patient engagement in research and have worked with researchers across a wide range of interests to help ensure that their objects are able to meet real patient needs and that their methodology is appropriate and effective. I have championed research engagement and collaboration within the cardiomyopathy community for the last six years and have supported the creation of platforms and infrastructure to facilitate engagement.
I am CEO of Cardiomyopathy UK, the UK’s leading cardiomyopathy charity, which provides information and support for thousands of patients and families across the UK as well as educational resources and conferences for medical professionals.
I have convened, and am chair of, the Cardiomyopathy Council, a newly formed global network of patient led cardiomyopathy groups from across Europe, the US and Australia. The council aims to support the creation of new cardiomyopathy groups in areas of need, facilitate information and resource sharing, undertake international awareness projects and work together to promote and support engagement in international research projects.