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Michael Fry introduces Nerve Tumours UK

Our brand new Chair of the Board introduces our bold new identity.

01 November 2018

"As Nerve Tumours UK, we owe it to the 26,000 plus people in the UK affected by neurofibromatosis and schwannomatosis to raise awareness, NHS funding, research and support. My own focus is in raising the profile of Nerve Tumours UK: I want everyone in Parliament to have heard of us, I want the newspapers to understand us, and I want GPs to know where to find us."

– - Michael Fry, Chair of the Board

1 November 2018

 

 

Dear Friends,

 

Letter from The Chair of The Board of Trustees, Nerve Tumours UK

I am pleased and honoured to become the Chair of Nerve Tumours UK at such an exciting time in our charity’s history. My family is affected by neurofibromatosis, and I have been supported by our charity. I am very much one of you.

This is a charity which has carried out sterling work supporting the neurofibromatosis community in the UK for decades, often for little praise and little recognition. I think it is fair to say that we have always been ambitious for more, but the reality is that it has been hard to maintain a steady course: conditions have been, and are, tough for any charity.

I know change can be unsettling, but I hope everyone will soon see the benefits of a name people can understand, which resonates and which demands attention. This is a charity which has a mission, and I am determined that now is that time that we deliver on that mission. As Nerve Tumours UK, we owe it to the 26,000 plus people in the UK affected by neurofibromatosis and schwannomatosis to raise awareness, NHS funding, research and support. My own focus is in raising the profile of Nerve Tumours UK: I want everyone in Parliament to have heard of us, I want the newspapers to understand us, and I want GPs to know where to find us.

We now have the right brand to champion our community. But I need your help. I hope that you are as excited as I am by the prospect of what Nerve Tumours UK could deliver: so, please, get involved. We need fund-raisers, organisers, runners, campaigners and sponsors and everything in between. Everyone has something to offer. For example: can you help us to be charity of the year for a local school or businesses? Please get a message to Head Office if you are willing and able to get involved.

Our Head Office team work extraordinarily hard on your behalf, and the amount of extra hours they have put in to support the change to Nerve Tumours UK is staggering and humbling. My thanks to them on behalf of everyone in our community. I am grateful for the work you do for all of us – it is really appreciated, although that is probably not said enough.

“If I have seen further it is by standing on the shoulders of Giants” – the Board and Nerve Tumours UK owes a tremendous vote of thanks to the Chair for the last five years, Dr Tim Corn. Tim’s leadership steered the Charity through the difficult post-financial crash years and built the foundations for the revitalisation we see today. Mike Mills, the previous Charity Director, whose management of the Charity alongside Tim allowed us to weather the storms relatively unscathed, also deserves proper recognition.

Last, but most importantly, I must thank the specialist nurses and medics who work with us. They work tirelessly for our community, providing support, reassurance, and answers. I think everyone has a story of a specialist advisor who has gone above and beyond to help, and we should all be very grateful that we are able to draw upon such expertise.

Head Office and Karen, your Charity Director, deserve a little return to normality following the frenetic launch of Nerve Tumours UK. However, in the New Year, the Board will be starting a strategic review, to set the path for the charity for the next five years. I will write to you again, but please start to think now about what Nerve Tumours UK could and should be doing to champion people affected by neurofibromatosis. I am always interested to hear your thoughts and comments.

With best wishes,

 

Michael Fry

Chair, The Board of Trustees

Nerve Tumours UK

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