Emily Earle, a CLUSTER Consortium Champion (Patient and Parent Network representative), shares her reflections on her involvement with CLUSTER over the past 2 years. Emily’s daughter was diagnosed with JIA at the age of two. After recognising the need for local support, Emily established the JIA Matters network of local area support for families dealing with a child with a paediatric rheumatic condition. JIA Matter incorporated with the charity CCAA for whom Emily now volunteers, running their network of 40 local area parent peer supporters across England and Wales.
Emily’s words:
It felt important to me to contribute to the work of the Cluster Consortium as a Cluster Champion on behalf of CCAA (Kids With Arthritis) as the vision of Cluster was so important to the families we support: the idea of the right medicine for the right child at the right time – this has the potential to change lives. Our work as Champions has been varied but the thread that runs throughout has been that of collaboration – with other charities, with parents, patients and families, with researchers, scientists and industry partners. There is a real sense of togetherness in the work and a common goal which is hugely satisfying. It has also provided us with a fascinating insight into the world of research and the opportunity to contribute the patient and family perspective to this has been positive. Our contributions are clearly valued and this makes volunteering feel very worthwhile. It has also been heartening to be able to go back to the families we support, letting them know about this work and talking about it with first-hand knowledge. We know it is the hope on the horizon for those who are newly diagnosed as well as those who have been on their journey with JIA , Uveitis, or both for a while.
To find out more about the charity Emily volunteers with, please go to https://www.ccaa.org.uk/
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