stene prize winner 2016 - simon stones prize...edgar stene prize winner 2016 – simon stones, unite...

Edgar Stene Prize Winner 2016 – Simon Stones, Unite d Kingdom

Simon Stones is a 22-year-old student and patient r esearch ambassador. He is

single and lives with his parents, both of whom hav e multiple rheumatic and

musculoskeletal diseases. His home town is Bolton i n the Greater Manchester area

of the United Kingdom (UK).

“I have lived with juvenile idiopathic arthritis (JIA), hypermobility and fibromyalgia from the

age of three, and have helped to care for my mother who has systemic lupus

erythematosus (SLE) and osteoarthritis. I am currently studying a bachelor’s degree in

biomedical sciences, and hope to do postgraduate research into child health.

As a consumer health advocate, I advise the UK’s National Institute for Health Research,

and Arthritis Research UK on their paediatric rheumatology research agendas. In addition,

I sit on numerous strategic and advisory panels for health and social care initiatives in the

UK, including the development of mobile app technology to promote self-management in

young people with JIA.

I have recently supported the development of EULAR/PReS recommendations for

transitional care in young people with RMDs, and I sit on the EULAR Young PARE working

group.

I began to work with EULAR Young PARE in 2015 to help give young people with RMDs a

voice in Europe. I was at the annual congress in Rome when I learnt more about the Stene

Prize and decided to take part. I wanted to share my story of living with arthritis to help

inspire other young people to realise that they are capable of achieving their dreams.”