23 October 2020
We are calling upon all members of our community and the public at large
to support us, spread the word and donate!
We need to ensure that we can maintain the care provided by our team of Specialist Neurofibromatosis Nurses and to be able to rollout our support services to other parts of the UK. We need to all work together and raise some very vital funds.
Neurofibromatosis (NF) is one of the most common neuro-genetic conditions, with many associated complications. It impacts on your every day and can destroy the quality of life. Our community-based specialist nurses provide vital support and advice, both medical and non-medical to patients, their carers, families, and the associated medical professionals involved in their care.
We do not currently have enough funds to cover the whole of the UK with regionally based nurses. Given the current crisis, people with NF now need our help more than ever, and so we need your help even more so.
How you can help:
- Buy one of our #OneMoreNurse Reusable Fabric Face Masks via the shop or over the head office phone – £1 from each mask sold will go directly to the #OneMoreNurse Campaign, where funds are restricted to setting up new regional posts. You can take a photo with your own mask ( write #OneMoreNurse on it if you want ) to participate and follow the steps below.
- Take a photo of yourselves with the mask / face covering
- Post the photo on your social media, copy and share the text below:
#OneMoreNurse support those affected with NF in the UK! Raising funds to finance the Specialist Neurofibromatosis Nurses Network - now amidst the crisis, and in the longer term. Copy, wear or buy a mask, take a selfie, repost! #EndNF https://www.globalgiving.org/projects/one-more-nurse/
Ask your friends, family, loved ones, followers to do the same. We are stronger together!
If you have any questions; email@example.com
* Read about the governmental advice on when and where you need to wear a face mask, at the end of this article.
NF is not well understood by most of the medical profession. GP's and non-medical professionals may have little or no knowledge at all. Demand for our services has increased dramatically during the current pandemic and further escalation is anticipated as lockdown restrictions vary around the UK. We therefore need to expand our network, to be there for those who need our unique and vital service.
We currently only cover part of the UK. If we can raise enough funds to increase this coverage to UK wide, all local associated professionals will grow in knowledge and so patients and their families will receive the support they need, throughout their lives, meaning a better quality of life for all.
The Importance of the Regional Specialist Neurofibromatosis Nurse
We must strive to maintain existing services, whilst working with others to rollout the network of specialist nurses throughout the UK. Those affected with Neurofibromatosis should not be dependent on a postcode lottery.
NF manifests itself in many ways and has many associated conditions, therefore impacting on many areas of people's lives, not just health. The specialist nurses take a lead role in liaison and advocacy with health, education, and social services to support quality and continuity of care for those affected by NF. They help people to learn to live with their diagnosis and to equip them with the knowledge of when, where, and how to seek help. The patient can enjoy a better quality of life, every day.
* Please follow the governmental advice on where and when you have to wear a face covering. Guidance and explanations are listed on the following links. The regulations in Wales, Northern Ireland, Scotland and in other travel destinations outside the country might be different.
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