RAiISE is managed by a 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 was diagnosed with Lupus aged 14 and was inspired to start RAiISE a couple of years later after struggling to get the right support in school. She is a passionate patient advocate and has been on national and international patient research advisory panels, aiming to improve patient voice in healthcare.
Sophie graduated from Durham University in 2020 with a degree in English and currently works in TV production.
Sammy is Chair of RAiISE and also the mum of Sophie who founded the charity after being diagnosed with Lupus at the age of 14.
Sammy has been the Youth and Family Participation Officer for NIHR Children’s Hospital, Alder Hey and the Experimental Arthritis Research Centre of the University of Liverpool for a number of years having previously been a primary school teacher.
She is also a trustee of the national charity Lupus UK.
In her spare time, Sammy enjoys travelling whenever she can, along with spending time with family, friends and her golden retriever Rosie who is an honorary member of the RAiiSE team.
Jenny currently has a full-time senior Patient and Public Involvement & Engagement position at the University of Liverpool, based at Alder Hey Children’s Hospital in Liverpool. She combines this role with studying part-time for a PhD that is exploring what meaningful patient and public involvement and engagement means to children and young people.
Jenny is passionate about making sure children and families have the opportunity to shape how child-health research is designed and conducted in the UK and globally.
Jenny enjoys travelling; appreciating beautiful food all over the world, playing tennis and spending time with her grandchildren.
Marie became Sophie’s English tutor just after she was diagnosed with Lupus and could relate to her
experiences as she also lives with an invisible illness. She was keen to help with RAiISE from the beginning and continues to be part of the journey as a trustee.
Marie works as a writer and editor in educational publishing, leading a team making resources for teachers. Very handy when it came to making our schools pack! In a previous life, Marie was a
secondary school teacher and SENDCo and keeps her hand in by doing private tuition in English and drama.
Marie is a mum of two children and a dog who keep her busy most of the time. Her love of dogs means that she is often to be found with one or two extra canines, looking after them for family and friends. Literally living with the pack!
DR SIMON STONES
Simon is a Medical Writer and has been advocating for people living with health conditions for over 10 years. He lives with childhood-onset arthritis and Crohn’s disease, among a number of other, invisible illnesses! Inspired by his own experiences, Simon completed his PhD looking at supporting young people with arthritis and their families to manage their condition together with healthcare professionals, charities, and teachers.
When he isn’t working, Simon is a travel addict, and can be found travelling up and down the UK, as well as abroad. He loves photography (as his Instagram page suggests), and can usually be found at theatre, eating cake, or enjoying long walks in the countryside.
Robyn has lived experience of living with an invisible illness, navigating through her school and university life, managing her condition. This motivated her to join RAiISE to support our mission, raising awareness and supporting young people to voice their needs and challenge when things aren’t right.
Robyn is a qualified Chartered Surveyor and Project Manager and works in Local Government. Through her experience of being involved in clinical research as a young person and the benefits it had, she now ensures young people are involved in regeneration projects, having their say on the area they live in.
Robyn hopes to inspire the next young person with an invisible illness, that you can perform a highly skilled job while managing your illness.
Robyn likes visiting the Lake District when she is away from work, with her family and Woody the Goldendoodle, enjoying the mountains and lakes.
Laura is a Trial Manager based at the University of Liverpool and Alder Hey Children’s Hospital, as well as the Grants Coordinator for Vasculitis UK. Having lived with invisible illness throughout her life, Laura has a passion for improving the lives of young people, whether that be through her work in awareness, education, safeguarding or research.
Outside of work Laura loves anything craft-related and is never happier than with needle and thread in hand, you will also find her at music gigs, book club and any beach that will have her!