A very “Happy Easter” to you all!
30 March 2021

A very “Happy Easter” to you all!
I hope you are all sitting out in your gardens, in the sunshine with family and friends, keeping to the social distancing rules (we cannot say we don’t know the consequences if we don’t!!!) and not huddled together as the forecast for snow has actually turned out to be true!!! How cruel that would be for everyone!
As we are all now talking about the roadmap back to normality, whatever the future may hold, now is the time to act. Each and every one of us is capable of, and certainly can help, to structure the future. It is so important that we get our NF voice heard, now more than ever, when there are so many things being debated.
We host many surveys, giving you the opportunity for direct feedback, not just because we have been asked to. We carefully consider every request and take advice from our Medical Advisory Board. We host surveys, when we know that the findings will have a positive impact, and will help to steer decision makers, policy, future research and ultimately will benefit every person diagnosed with NF.
It is so important that you have your say, so please do participate. Even if you feel you cannot answer, or you feel uncomfortable about answering certain questions, there is always a chance to pass on those sections, so please do still take part, and submit your answers. You will be helping to make everyone’s daily life just that bit better, and in conjunction make the world a far better place!
We are now also in the process of planning for World NF Month in May. Given the further easing of restriction on the 17th itself, please do think about taking part in some of our challenges, or even setting up your own. You may also take a look at any of our other initiatives and help to make sure that our NF voice is heard.
I look forward to hopefully seeing many of you in the coming months!
With my very best wishes,
Karen
Get Active for Nerve Tumours UK!

Do you want to talk to our fundraising team?
If you’ve got your own unique fundraiser let us know and become one of our fundraising inspirations! Or if you want to pick some of our ideas contact us at fundraising@nervetumours.org.uk or call 0208 439 1234 and speak directly to our fundraising team.
Filter News

Best Film Nomination “Shine A Light on Neurofibromatosis” PM Society Digital Awards
Join the awards ceremony virtually this Wednesday 16th September
Read More
Act it Out Prototype App Trial
If you are experiencing difficulties related to NF & 'Visible Difference' - find out how you can take part
Read More
The Virgin Money London Marathon Goes Virtual
Sign up for your Virtual London Marathon experience Sunday 04.10.2020
Read More
Accessible Online Meetings for those with hearing impairment
Frances Harris talks to us about the difficulties faced by those with NF2 & hearing loss communicating online and solutions
Read More
Pipers to Paris - Ride for Neurofibromatosis
Read all about Mr. Cohen's epic 230 mile bike ride to help support those affected with Neurofibromatosis in the UK
Read More
Artificial Intelligence & Disability Recruitment
Creating fair processes for people with disabilities by the HR teams that are using artificial intelligence/face recognition
Read More
It’s a Kind of Magic
Mike Brennan has had to deal with the stigma as well as the symptoms of NF1, which he has battled since he was a young child.
Read More
Centre for Appearance Research (CAR) and The VTCT Foundation Virtual Showcase 28th July 2020
Get the latest updates on the Centre for Appearance Research's work into helping people with Visible Difference
Read More