What are the CLUSTER Consortium Champions?

The CLUSTER Consortium Champions (CCCs) are individuals who have personal ties to JIA and its associated eye inflammation, JIA-uveitis, typically being patients or parents (or in some cases, both). They have the important role of gathering information from their networks and representing their views for the CLUSTER Consortium. The Champions express the thoughts, interests and ideas of patients, parents, families, charity representatives, stakeholders and the public throughout CLUSTER. Champions will represent the CLUSTER Patient and Parent Network (PPN) at events, online and at a variety of CLUSTER meetings.

CLUSTER Consortium Champions

Richard Beesley

Richard Beesley is the founder of Juvenile Arthritis Research and volunteers with them – a charity that undertakes research into Juvenile Idiopathic Arthritis (JIA), raises awareness that children and young people get arthritis, and undertakes family support work. His work links to a number of other parent support networks, and collaborates with teams internationally. Richard’s wife was diagnosed with JIA when she was 10 years old, and their daughter was diagnosed with poly-JIA when she was 2, so he wears multiple hats in the JIA world including being a JIA Parent. He has extensive project and communications experience from a variety of fields, and is keen to support the work of the CLUSTER consortium as one of our Champions.

Since joining CLUSTER, Richard has undertaken a PhD in JIA with CLUSTER Co-Investigator Professor Kimme Hyrich. Read the full story here!

Emily Earle 

Emily lives in London with her family and has a daughter with JIA who was diagnosed at the age of 2. After recognising the need for local support herself, Emily established the JIA Matters network of local area support groups for families dealing with a child with a paediatric rheumatic condition. In 2019, JIA Matters incorporated with the charity CCAA for whom Emily now volunteers – she runs their network of 40 local area parent peer supporters across England and Wales. Emily regularly speaks at events for healthcare professionals about the patient/family experience, works closely with the other charities in the field and i building links with the research community. In her previous work with the BSPAR parent group, Emily heard about CLUSTER and was keen to become a CLUSTER champion herself in order to ensure that the network of parents supported by CCAA are directly connected to the work of CLUSTER which promises to bring them great hope!

Kerry Leslie

Kerry is a senior public engagement and impact professional specialising in working with academic researchers and the higher education sector. She worked for the research councils for over sixteen years and was the Head of Research Council UK’s Public Engagement with Research and a trustee of the British Science Association.

Kerry specialises in working with funders, academic researchers and the higher education sector, acting as an external advisor to assess public engagement and impact capability, advise on public engagement and impact strategies, and draw on evidence to inform future investments. Kerry’s PhD in Astrophysics was gained at University College London’s Mullard Space Science Laboratory.

Kerry’s daughter, Jasmine, was diagnosed with JIA at age seven and with uveitis shortly after and has undergone many different treatments over the last nine years. Therefore, she is extremely interested the work of the CLUSTER Consortium which offers hope for all families living with JIA and Uveitis.

Debbie Wilson

Debbie is a patient and parent of JIA and shared her journey with JIA and motivations for joining CLUSTER. You can read this story here.  Debbie has recently launched a new patient-led charity, Inflammatory Arthritis UK, run by volunteers living with inflammatory arthritis. Their vision and mission centers on inspiring resilience and empowering lives for anyone of any age living with inflammatory arthritis.

Catherine Wright

Catherine has lived with JIA and uveitis since she was 18months old – she is a young people and families service manager for Versus Arthritis in Northern Ireland working closely with the Paediatric Rheumatology Team, she is a consumer on the Paediatric Rheumatology Clinical Studies Group.

Eilean MacDonald

Eilean was diagnosed with JIA at 18 months old and also has a full left ankle replacement. She is currently a PhD student at the University of East Anglia studying in the field of Oceanography.

 Although a different field to her studies, Eilean is passionate about ensuring patient involvement in medical research, giving patients a voice in the medical community. Eilean has worked with the CLUSTER team since 2017 allowing her to be involved with its formation and progression over time. Her role as a CLUSTER Consortium Champion allows her to advocate for patients from a young person’s perspective.

Anna Sherriffs

Anna was diagnosed with JIA at the age of 3 and is really passionate about advocating for other children and young people like her.

Anna is a trustee for the Scottish Network for Arthritis in Children (SNAC). She feels strongly that patients should be involved in research to ensure their voices are being heard. Anna is also a final year Biomedical Science student with an interest in research, currently undertaking her honours project.

What have the CLUSTER Champions achieved together?

From its inception, CLUSTER developed a dedicated UK-wide PPIE group, the CLUSTER Consortium Champions. These individuals have lived experience of JIA and/or JIA-uveitis, typically being patients or parents. Several of the Champions also represent JIA charities thereby forming a wider patient and parent network, helping to diversify patient views and experiences that they bring to CLUSTER. Through their multiple contributions to CLUSTER, and integral part of the CLUSTER Community we believe that we have generated a step change in PPIE in JIA research compared to where the PPIE networks started. The commitment, work and influence of the Champions to CLUSTER both as a project but more importantly to the researchers will have lasting impact.  

Take a look at the Champions’ ‘CV’ which summarises some of their fantastic outputs and impact (click image to enlarge).

Previous Members

Sharon Douglas

Sharon Douglas is a mum of Beth who has JIA and Crohn’s disease. She is responsible for representing the family voice and for helping to ensure CLUSTER is centre to patients and family’s needs. She the co-founder and Chairperson of the Scottish Network for Arthritis in Children (SNAC). With previous experience of Breast cancer research nursing she is a firm believer in the importance of collaborative and relevant research. She also believes in the importance of the patient and parent voice and has represented families on the MCRN Clinical studies group, and on the BSPAR Parent Group which she helped establish.

Nick Gannon

Nick’s youngest daughter was diagnosed with Poly-JIA shortly before her second birthday.  He has seen the effects of arthritis on a young child and not just the condition, but also the treatment that has a huge impact on the child concerned, and their family. 

Nick wanted to become a CLUSTER Consortium Champion in the hope that the work can at the very least ameliorate the symptoms and side-effects of  arthritis on children.