05 May 2020
Dear Friends and Supporters,
I write to you in one of the strangest periods of our lives. At present, a third of the global population is under some form of lockdown, and in the UK, it is unclear how and when restrictions will begin to be relaxed. It is a cliché to say that this is an unprecedented situation. We cannot know what the impact of Covid-19 will be in the medium to long term, except that there will be an impact, and it is likely to be significant generally, and for our charity.
This uncertainty has been devastating for the charity sector, and nearly all charities are reporting huge drops in fundraising income. Many charities find themselves unable to carry out their day-to-day activities, at precisely the time when many beneficiaries are desperate for support and advice.
Despite this, our friends, beneficiaries and supporters have been fantastic. Our community boards have been busy, and I have been really pleased to see the support and advice that we have offered each other, which I am sure has helped to ‘flatten the curve’ for our specialist NF nurses and helpline. The loss of our big fundraising events like the London Marathon and large community initiatives present worries, but our supporters have been amazing and shown such resilience – I have never seen Facebook so full of individual fundraising events from Mel’s Easter Egg head shaving exploits to the 2.6 challenge and other creative lockdown challenges. Please do think of us and consider staging an online fundraiser – people have been really generous, and I have been surprised and touched by the amounts raised so far. Now is also a great time to try to get fit and get prepared to take part in sponsored events for when lockdown is relaxed – you need to register now though for some of them!
I am pleased to report that, for the time being, your charity is in good shape. The Board’s reserves policy has ensured that Nerve Tumours UK has enough money to last through a relatively long period of uncertainty, although this is at the cost of reduced services and staffing. Worse, reliance on the reserves means that there will be a shortfall which we will need to make up in the future.
Karen and the Head Office team reacted swiftly and decisively to the lockdown. I am very grateful to everyone for their willingness during this period and I look forward to Head Office operating normally again as soon as possible. Nerve Tumours UK continues to be available online, providing support via the helpline and funding the Specialist NF Nurse Network. I am sure that I speak for all of us when I express my thanks and appreciation to all the Nerve Tumours UK staff for their extraordinary work and flexibility in the most difficult circumstances. When I clap for our carers each Thursday evening, our staff and specialist advisors are foremost in my mind.
One immediate and regrettable decision the Board has made is to rethink the charity’s strategy for the next five years, a subject which has taken much time and debate over the last year and was nearing publication. The outlook for the charity sector remains bleak, and in the short to medium term the focus of Nerve Tumours UK and the Board must be on maintaining our services and supporting our beneficiaries. Ensuring the long-term stability of the charity must now be our focus, not significant expansion. However, there remains an opportunity to think about the work of the charity and we have issued a short survey to ask you where you think the focus of our activity should be over the next few years.
Lockdown has made it very clear to many in the charity and business sector that there are more efficient ways of working, travel costs (and the environmental impact of that travel) are mostly unnecessary, and video-conferencing is acceptable for social and professional meetings. I would urge you to complete the survey, as we are very keen to hear the views of as many people as possible, whether you live with NF, or if you live with, or care for, someone with NF.
I hope and I trust that you keep well. If, like me, you have school age children, I hope that you manage to keep sane and keep smiling. I appreciate that not everyone has the pleasure/pain of spending this time with family, so please do not allow yourself to be lonely. Come and speak to us – our community forums are a great place to start, and I have found that Zoom chats and streams of text messages can be a helpful temporary replacement for meeting friends and family. There are lots of great resources on the Nerve Tumours UK website and Facebook community pages.
I finish if I may by reminding you that it is almost World NF Day. The Shine a Light campaign is a wonderful opportunity to inform and educate people about NF, and to start conversations with your wider friendship groups. Please do what you can to get stuck in, and let people know all about NF!
My best wishes to you and your loved ones during these challenging times, and please stay safe. As ever, I remain available to all of you, and I would be delighted to hear your thoughts.
Chair, Nerve Tumours UK
Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the 2021 NHS England NF2 meeting
Read more about the England NF2 meeting - working together to improve the experience of NF2 patientsRead More