Governance
ReNU Syndrome UK is a private company limited by guarantee, currently applying for registration as a charity. This page sets out who runs the charity, how we operate, and where to find our policies and governing documents.
Registered details
Charity name: ReNU Syndrome UK
Company number: 17255929
Registered office: 24 Petrel Way, Morley, Leeds, LS27 8GB
Legal structure: Private company limited by guarantee
Charity status: Application in progress with the Charity Commission for England and Wales
Governing document: Articles of Association
ReNU Syndrome UK is awaiting registration as a charity. Once registered, we will publish our registered charity number here and be able to claim Gift Aid on eligible donations.
Our approach to governance
ReNU Syndrome UK is governed by its Board of Trustees, who together take collective responsibility for the direction and running of the charity. Trustees are appointed under the Articles of Association and serve without payment.
The Trustees meet regularly to review activities, plan for the future, and ensure the charity operates in line with its charitable purposes. Decisions are made collectively, and we welcome open engagement from the families and communities we serve.
Every part of what we do is shaped by the people we exist to support — through direct feedback from families, through our conferences and meet-ups, and through the lived experience many of our Trustees bring themselves.
Meet our Trustees
Our Board is chaired by Claire Stockton, with Lucy Bartlett as Secretary and Emily Cox as Treasurer. The full Board is made up of seven Trustees — families affected by ReNU Syndrome, and professionals bringing experience from healthcare, education, ecology, and the charitable sector.
Claire Stockton
Chair
Claire is Chair of ReNU Syndrome UK and one of its co-founders. She is mum to Finley, 20, and lives in Hull (soon relocating to North Lincolnshire), working as an Operating Department Practitioner and Surgical First Assistant at Nuffield York.
After 19 years searching for answers for Finley, Claire saw the need for families to have a voice, to be heard, and to support each other and every family that comes after them.
Lucy Bartlett
Secretary
Lucy is mum to Elodie, 6, and lives in Southampton. Professionally, she works as a Senior Ecologist and chairs her company’s welfare group, advocating for employee wellbeing and a supportive workplace culture.
“What we needed — and what didn’t exist — was a support network where families could share knowledge, feel understood, and not have to struggle alone. That’s what we’re building.”
Emily Cox
Treasurer
Emily is Group Commercial Director at Cedar Court Hotels, with over 20 years’ experience in hospitality leading commercial strategy across revenue, sales, marketing, technology, and business development.
She is aunt to her niece Arabella, who lives with ReNU Syndrome, and is committed to raising awareness and helping families connect with the information, resources, and community they need.
Michaela Kerr
Trustee
Michaela lives in County Durham and is mum to Elliott, 9, and Samuel, 4, who was diagnosed with ReNU Syndrome in November 2024. A primary school teacher in specialist provision, she brings both professional experience of SEND and personal understanding to the Board.
“They say it takes a village — and this is our village.”
Christina Cox
Trustee
Christina is mum to Arabella (Bow), 10, and lives in Bicester, Oxfordshire. She is a full-time carer for Arabella and runs her own small business, Where’s Woolly’s Yarns.
Christina became involved with ReNU Syndrome UK to support families and raise awareness of the condition.
Loredana Guetg Wyatt
Trustee
Loredana splits her time between Switzerland and the UK (London and Poole) and is mum to Lawrence, 14, who was born with Fibular Hemimelia. Her professional background is in governance, risk, and compliance, and she has served on the boards of several charities, including as CEO of Steps Charity Worldwide — bringing deep sector experience to the Board.
“Every family facing a rare diagnosis deserves support, understanding, and hope.”
Siobhan Halliday
Trustee
Siobhan lives in Leicestershire and is a GIS graduate, working for Tarmac where she maps and manages land data across the business.
She is Arabella’s aunt and joined the charity to help raise awareness of ReNU Syndrome and support families navigating a rare diagnosis.
Medical Advisory Panel
We are in the process of establishing a Medical Advisory Panel of clinicians and researchers with expertise in ReNU Syndrome and related conditions. Once formed, the panel will support the charity’s activities by advising on medical accuracy, family-facing content, and research priorities.
Panel details will be published here once appointments are confirmed.
Policies & Statements
These policies underpin how we operate — from safeguarding those we serve, to how we handle personal data and respond to concerns.
Safeguarding Statement
How we protect children, young people, and adults at risk in all our activities.
Equality, Diversity & Inclusion
Our commitment to fair, inclusive practice across everything we do.
Medical Information Statement
Our commitment to making our website and services accessible to everyone.
Complaints Policy
How to raise a concern and how we will respond.
Policy to Follow
Articles of Association
Our Articles of Association are the formal governing document that sets out ReNU Syndrome UK’s purposes, structure, and rules of operation. A full copy is available on request.
To request a copy of our Articles, please contact us at renusyndromeuk@outlook.com
Get in touch about our governance
For questions about how ReNU Syndrome UK is run, our policies, or our Articles of Association, please contact us.