Our Trustees
Our Board of Trustees contribute their expertise, leadership and experience to the strategic direction and governance of the charity.
Ultimately, their work changes lives, by utilising their specialisms, working with the businesses, NHS contacts and many more. We are very grateful for the commitment of our trustees who continue to support the charity in new and ambitious ways.
Richard Goode
Chair
Richard Goode is a fellow of the Royal Institution of Chartered Surveyors and has been managing director of Fletcher King PLC, based in London, for the last 15 years and specialises in commercial property fund management. He lives in Surrey with his wife and has 3 grown up children. His eldest son has NF1.
Prof. Rosalie Ferner
Professor Ferner is a Consultant and Professor of Neurology at Guys and St Thomas's Hospital, and previously the Chair of the Medical Advisory Board of Nerve Tumours UK. She has been national lead for the nationally commissioned NF1 service since 2009, and lead for the London NF2 service since 2010. The aim of the national neurofibromatosis services is to give expert, multi-disciplinary, holistic care to people with complex, multi-system disease. Her specialist clinical work is in tumour suppressor conditions – NF 1 and 2, Schwannomatosis and von Hippel Lindau disease.
Michael Fry
Michael has a son, Freddie, who was diagnosed with NF1 as a baby. He is a barrister specialising in planning, regulatory and public law. Michael has a Master's degree in Social and Political Science, from the University of Cambridge, and read law at BPP University. Before entering the law, Michael served in the Household Cavalry for seven years, holding the rank of Captain. He was a military press spokesman for the Army Reserve. Michael has experience of public affairs, media engagement and charity law, and hopes to use these skills in support of Nerve Tumours UK. His particular areas of interest are supporting and growing the advocacy and fundraising aspects of the charity. He is also a liveryman of the Skinner's Company.
Stewart Lee
Stewart is based in Leeds and has lived with NF2 for the past 39 years. A Communications specialist by trade, Stewart is currently the Social Media Manager at the University of London, having previously worked at Queen Mary University of London and The University of East London. He began his career in Digital Communications at a Social Policy think tank, The Joseph Rowntree Foundation. Stewart has been a supporter of the charity alongside his family for the past 25 years, having inherited the condition from his father. In his spare time Stewart is a proud uncle and huge fan of all things Yorkshire and Leeds United. Stewart is particularly proud of how the charities brand, reach and amazing supporters have grown in recent years.
Jonathan Bruce
Vice Chair
Jonathan Bruce is the Chairman and Owner of Fitzgerald Fostering, a leading Independent Fostering Agency based in Bracknell. Before that he was the CEO of Sodexo Homecare for the UK and Ireland and has over 25 years’ experience in the Social Care Sector, formerly with his family’s business, Prestige Nursing, and latterly with Sodexo, which acquired Prestige in 2017. Jonathan has a degree in Industrial Economics from Nottingham University and an MBA from Kingston University and lives in Surrey with his wife Deborah and their three children. His eldest son, Henry was diagnosed with NF1 six months after birth and has overcome numerous challenges
since then, including major spinal surgery. Jonathan is looking to support the charity both personally through various fundraising activities and professionally using his extensive business experience.
Rohan Chanmugam
Rohan is Founder and Chair of Clevercoms Ltd, a management consultancy advising the Telecoms, Media and Technology sector. His
career includes C-level and non-executive roles within several complex, global organisations. His expertise is in corporate strategy, business transformation and all aspects of financial management, specialising in investment analysis, revenue generation and cost management. Rohan is a Freeman of the City of London and a Liveryman of the Worshipful Company of Glass Sellers of London . His business experience and network will be of enormous value in helping to drive the charity forward to achieve its aims.
Prof Meena Upadhyaya OBE
Professor Upadhyaya is Professor Emerita in Cancer and Genetics at Cardiff University, Wales, and is proud to have been a part of the NF1 research community since 1986. At that time, there were only a handful of researchers studying NF1. She has published over 200 research papers in peer-reviewed journals, edited three books on NF1 and written 30 book chapters. She is honoured to serve as a trustee and medical advisor for Nerve Tumours UK, offering support and advice to Welsh NF1 families and healthcare professionals. She has had the privilege of sharing her research data and interacting with patients and their families at various international meetings. She is passionate about improving the quality of life for NF1 patients, and this has inspired her to continue with her research and international collaborations after retirement. Over the last four years, she has served as a Non-Executive Director with the Welsh Government providing assurances and challenges.
Matt Jones
Matthew is a director and deputy fund manager at M&G plc, specialising in structured finance investments. He is a Chartered Financial Analyst (CFA) Charterholder and holds the Certificate of Quantitative Finance. Matt holds a degree in Mathematics from the University of Cambridge. Matt has a younger brother with NF2 and, having fundraised for the charity in the past, is looking to further support the charity going forward in these areas.