Michael Fry introduces Nerve Tumours UK

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