RAiISE is managed by small team of volunteers, passionate about supporting and advocating for young people with invisible illnesses, and their families. Here’s a little more about them!
Founder and Chief Executive Officer
Sophie is the Founder and CEO of RAiISE. She is a young person with lived experience of an invisible illness, which led her to establish RAiISE in 2016, following negative experiences in school. She is also a member of several patient advisory groups, including the National Institute for Health Research INVOLVE Advisory Group and the North West Lupus UK committee. She also has experience of being involved in research and has recently completed a degree in English Literature at Durham University.
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Sammy chairs the Board of Trustees for RAiISE and also acts as a parent representative. She is the Youth and Family Participation Officer for the National Institute for Health Research Alder Hey Clinical Research Facility, where she facilitates the young person and parent research advisory groups under the umbrella of GenerationR (a national Young Person’s Advisory Group). She is also a trustee of Lupus UK and a board member of the European Network for Children with Arthritis and Autoinflammatory Diseases (ENCA).
Jenny is Vice Chair of the Board of Trustees for RAiISE, and currently has a full-time senior Patient and Public Involvement position at the University of Liverpool, based at Alder Hey Children’s Hospital in Liverpool. Jenny has worked with the National Institute for Health Research (NIHR) since 2006, on numerous initiatives and projects. Her main role is to deliver a strategy for the involvement and engagement of young people and families in the design and conduct of paediatric health research in the UK, Europe and further afield.
Marie is the Treasurer of RAiISE and was a Special
Educational Needs Co-ordinator and secondary school teacher for 13 years. She is now a content writer and team leader for an educational publishing company. As well as her education background, Marie has lived experience of invisible illnesses, bringing her unique perspective across the health and education sectors.
Simon is the Secretary of RAiISE. He is an award-winning patient advocate, speaker and consultant, with lived experience of invisible illnesses since childhood. In 2019, Simon was recognised as one of the 100 most influential people with disabilities in the UK. He has undertaken a PhD in applied health research, focused on self-management of arthritis by children and their families. Simon is an active patient research partner on a large number of national and international research initiatives and is a board member of the European Network for Children with Arthritis and Autoinflammatory Diseases. He has also served as President of the European Network of Fibromyalgia Associations.
Trustee for funding and fundraising,
Designated Safeguarding Officer
Laura co-leads RAiISE’s funding and fundraising strategy, and is also our Designated Safeguarding Officer. She has a wealth of experience in administration and management across various sectors, including the NHS, children’s services and education. Laura is currently an administrator of the Experimental Arthritis Treatment Centre for Children (EATC4Children), based at the University of Liverpool and Alder Hey Children’s Hospital in Liverpool, as well as an awards administrator for Vasculitis UK. Laura has lived experience with invisible illness throughout her life and this has given her a passion for improving the lives of children, whether that be through driving awareness, education, safeguarding or medicine.
Trustee for funding and fundraising
Robyn co-leads RAiISE’s funding and fundraising strategy. She is a young person with lived experience of invisible illnesses, who was motivated to join several research programmes and advisory groups, including being an early member of GenerationR, now a national and international young people’s advisory group for health research. She has since graduated from university with a Master’s degree and currently works in local government as an Assistant Development Officer.