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2020 A Review

18 December 2020

This certainly has been a strange year for everyone to say the least, affecting you as a community and us in the head office. We have all had to adapt. The team has moved to working remotely, adhering to government guidelines, and ensuring we are also still able to continue ‘business as usual’ as best we can, to support our NF community and so did you.

Moving online has presented its challenges. We aimed to provide you solutions on specific issues as in example online meetings, accessibility to information and practicalities on communicating through video conferencing software like Zoom. The crisis had its impact on everyone’s emotions, and we set up our help section with online support options and go to sources dealing with loneliness, employment, care and other issues. At the same time we aimed at entertaining you with virtual possibilities visiting museums online or simply staying fit in your home. As a charity, we have made sure we have reacted quickly to the current climate, updating you with all the relevant information on how Covid19 impacts people affected by Neurofibromatosis. We must thank Professors Ferner and Evans, respectively, for their speedy responses to our increasing number of queries and checks. We are very privileged to have two such important people in the NF World as part of the charity. Given the huge number of calls we received at the start of the pandemic, we decided to extend the operational hours until the end of August of the National NF Helpline, to make sure we were able to answer all sorts of new queries thrown up by the pandemic, and to be a supporting and guiding hand throughout the period. We have to thank our specialist Neurofibromatosis nurses team to take on the extra work and help us and you to navigate through often unchartered territories. But foremost we have to thank all of you for being so active in this changed climate following our call outs to participate in activities that ranged from;

turning into eggs by shaving your head for our Easter Egg campaign

to garden marathons on World NF Day

and virtually going to the theatre with our trustee Emily Owen on World NF 2 day

Thank you for following our call outs and participating in numerous ways or for being creative by yourself and fundraising!

by devouring Kebabs over 1 month

and walking as a Santa Brigade on the Isle of Mull.

All to raise awareness for those affected by Neurofibromatosis. We had active writers directly in the community to give us insights on how live in lockdown was form a teenage perspective reflected in a “Flu Jab” or by writing blogs specifically addressing the NF2 community. Our own private BoJo addressed the nation on world NF day on behalf of you. Looking at our closed community group on our Facebook channel interaction and membership grew immensely over this year and realising how important the group for those affected is, by giving the possibility to  communicate issues and personal matters privately.  This simply showed us that you grew stronger and closer as a community in this situation of crisis.As each week the nation & our community came together at 8pm on Thursdays in the first lockdown. Giving our heartfelt thanks and applause to show support and solidarity for the NHS & all key workers. We now certainly know what is meant by a keyworker! Our team & board joined in each week, from the safety of their own homes, to clap on their doorsteps, and we all felt very proud that the charity we all support plays a huge part in helping to provide specialist nursing services for our NF community.

We understood the importance of our Specialist NF Nurses even more. A massive thank you to those who joined in with our #OneMoreNurse Campaign by buying the mask, sending us photos and sharing our pledge with the result that we were able to announce 2 more Specialist NF Nurses by the end of the year in Sheffield and Southampton.

Let’s hope that 2021 will bring us some more normality and we will be able to go back to meet in person, organise information days and take part in outdoor activities as we used too. 

The Nerve Tumours UK Head Office Team!

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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

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