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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. 

Michael Fry

Michael has a son with NF1. He is a barrister specialising in planning, regulatory and public law, and used to be in the Army. He has experience of public affairs, media engagement and charity law. His particular areas of interest lie in developing advocacy and fundraising.

Prof. Rosalie Ferner

Professor at Guy’s and St. Thomas’ NHS Foundation Trust / IOPPN King’s College London. She was the 2016 recipient of the European Theodor Schwann award for contribution to Neurofibromatosis. 

Richard Goode

A businessman and specialist in property fund management, Richard is a fellow of the Royal Institution of Chartered Surveyors. For the last fifteen years, Richard has been the Managing Director of Fletcher King PLC and as a family man he and his wife happily brings support to the charity, as his son lives with Neurofibromatosis Type 1.

Stewart Lee

Stewart is a digital communication professional who has worked at a range of national third sector organisations in the past decade, including the Business Disability Forum, Scope and the Joseph Rowntree Foundation, a social policy think tank. Stewart is also a fellow of the Social School for Entrepreneurs. Stewart lives with Neurofibromatosis Type 2 and brings valuable digital communications and accessibility expertise to the charity.

Jonathan Bruce

Jonathan Bruce is 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 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 has had a long career in the telecoms, media and technology sector and is founder and Chairman of management consultancy, Clevercoms. He is on the board of Affluence Corporation a company that is focused on technology that is driving areas such as AI and the Internet of Things.

Rohan is a Trustee of the FARS Chanmugam Trust, a charity helping to improve the lives of vulnerable children in Sri Lanka. He is on the Court of the Worshipful Company of Glass Sellers of London and a Freeman of the City of London. Rohan’s involvement in and knowledge of technology that is impacting how we live and work and his extensive experience in financial management and corporate strategy will be invaluable in helping the charity achieve its ambitions.  

Prof Meena Upadhyaya OBE

Now retired, Professor Meena Upadhyaya OBE obtained her PhD from Cardiff University and completed a fellowship with the Royal College of Pathologists (RCPath). She is Emirita Professor in Medical Genetics at Cardiff University, Wales.

Her research career focused on many genetic disorders, especially neurofibromatosis type I (NF1) and facioscapulohumeral muscular dystrophy. She has published 200 papers and has edited 3 books on NF1. She was awarded the European Theodore Schwann award for her outstanding contributions to NF1 research in 2013, OBE in 2016 and Saint David Award in 2017.

She is a Fellow and Council member for the Learned Society of Wales and the Royal College of Pathologists.

Meena is an avid advocate for promoting equality, diversity, community cohesion, and integration. She is the founder and Chair of the Ethnic Minority Welsh Women Achievement Association (EMWWAA) and the Ethnic Minority Women in Welsh Healthcare (EMWWH).

Matt Jones

Matt Jones is a director and deputy fund manager at M&G plc, specialising in structured finance investments. He holds a degree in Mathematics from the University of Cambridge. Matt is also a Chartered Financial Analyst (CFA) charter holder and holds the Certificate of Quantitative Finance (CQF).

Matt has a younger brother with NF2, and this family connection has driven his desire to help and support the charity going forward. In the past, he has fundraised for the charity through running the London Marathon and is now looking to become more involved through being a Trustee. Matt is hoping to help with and broaden the charities fundraising efforts, with a view to helping more and more people diagnosed with NF.

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK