“Happy Easter”

“Happy Easter”

I hope you are all enjoying the long bank holiday weekend!

Easter is quite late this year, and we will soon enter May – World Neurofibromatosis Awareness Month, an even more special time for us this year, as we celebrate forty years of the charity being in existence. The charity has faced many storms over the years, not least over the last two years, when Covid forced the world into lockdown. Although we carried on with business as usual as best we could, our finances took a beating. 

Therefore, I would really like to thank our supporters, who are now starting to get out and about, raising both awareness and funds. Quite simply, without you, we would not be able to deliver our services. We hope to meet up with many of you over the coming months, be it at the London Cycle Event, the various marathons, or at the Neurofibromatosis Conference to be held in Manchester in October.

Regarding the conference, we recently helped by distributing a survey asking what was of interest and what was most important for our community to hear and learn about, and I was delighted to see that the message to both the key players in the NF community, and to the charity, has not changed from the survey we ran two years ago.

Access to support services are still key, and with this you have the complete and unwavering backing of the charity. With a hopeful return to pre Covid fundraising, we will be focusing our attention on parts of the country deprived of regional support. Everyone should have the same level of access to support. To assist with the expansion of our Specialist Neurofibromatosis Network, we need to continue raising awareness of what we do. To that end, Nerve Tumours UK have joined forces with RBH Creative Communications, to launch a nationwide awareness campaign, to engage with the wider British public.  

As ever, it is so important that you have your say, so please do participate in all surveys or research questionnaires that we distribute, or talk to us directly. You will be helping to make yours and everyone else’s daily life just that bit better.

Here's to our fortieth year of raising awareness. 

With my very best wishes,

Karen