RECORD BOOST FOR SPARKS CHILDHOOD ARTHRITIS RESEARCH
SPARKS has won a near £400,000 grant from the National Lottery’s Big Lottery Fund.
Following the mid-May announcement Chief Executive John Shanley said “This highly-coveted award is a tremendous breakthrough, recognising the importance of SPARKS work and the quality of our team and the expertise at our disposal. It is a very significant moment in our history and takes SPARKS on to the next stage in its development”.
The £396,620 grant from the Big Lottery Fund’s research grants programme will pay for a groundbreaking SPARKS-inspired and managed research project into childhood arthritis.
The 4-year research programme into Juvenile Idiopathic Arthritis (JIA) will be carried out at the world-renowned Institute of Child Health and Great Ormond Street Hospital in London.
Its overall aim is to improve the treatment of children suffering from JIA and reduce pain, disability and social exclusion caused by a devastating condition affecting one in a thousand UK youngsters.
The ‘social exclusion’ dimension of the research was a crucial requirement of our bid for Lottery funding. It acknowledges the damage caused to children through missed schooling, loss of opportunity to play sport and take part in games and the negative impact that can have on family life.
A crucial aspect will focus on why some children react well to anti-arthritis medication and regain near-normal levels of activity and others do not, despite receiving exactly the same treatment. It will endeavour to predict which children will respond well to therapy and which children would benefit from the most aggressive forms of treatment at an early stage to reduce the risk of permanent disability.
The research team, led by Dr Lucy Wedderburn, Senior Lecturer and Honorary Consultant in Paediatric Rheumatology, will involve around 700 children in their study. The total cost of the project is £419, 138, with SPARKS funding the small balance not covered by the Lottery.
A unique element will be the combined study of the genetic, biological and psychological responses of children to JIA treatment and establishing to what degree psychological factors explain the discrepancy between how individual youngsters react so differently to the same medication.
The breakthrough differs significantly from SPARKS normal work because the Big Lottery Fund’s grant rules stipulate that a charity must own and manage a research project rather than merely fund it.
With this requirement in mind, SPARKS liaised with Dr Wedderburn, a previous recipient of the charity’s funding, who spelled out the important research work that needs to be carried out to combat severe cases of JIA and address both the medical and social consequences of this terrible illness.
To establish the urgent need for such a major JIA research project, SPARKS consulted the Children’s Chronic Arthritis Association, Britain’s largest support group for affected families. Eighty families took part in a survey, with 95% pledging their willingness to help the research team.
A management group is being set up to run the project. It will be chaired by Dr Renny Leach, SPARKS medical research consultant and will include Professor Taunton Southwood, Director of Research at Birmingham University, an internationally-recognised authority on juvenile arthritis and a member of the SPARKS Medical Advisory Council. The management group will also include patient representation.
John Shanley added: “Recognition by the National Lottery opens up a whole new world for SPARKS. It will enable us to achieve our ultimate target of being able to originate, commission and promote paediatric medical research, in addition to funding projects that are brought to us.