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#OneMoreNurse for Neurofibromatosis

by Nerve Tumours UK
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#OneMoreNurse for Neurofibromatosis
#OneMoreNurse for Neurofibromatosis
#OneMoreNurse for Neurofibromatosis
#OneMoreNurse for Neurofibromatosis
#OneMoreNurse for Neurofibromatosis
#OneMoreNurse for Neurofibromatosis
#OneMoreNurse for Neurofibromatosis
#OneMoreNurse for Neurofibromatosis
#OneMoreNurse for Neurofibromatosis
#OneMoreNurse for Neurofibromatosis
#OneMoreNurse for Neurofibromatosis
Sam Gaden (Nurse for Liverpool and the North West)
Sam Gaden (Nurse for Liverpool and the North West)

Thanks to your donations, Sam is helping people with Neurofibromatosis in Liverpool.

She has been in the role since January this year, 8 Months later Sam would like to update you on her progress an thank you for all your donations.

"Thank you for donating to #OneMoreNurse Campaign, as a result of your donations I would like to introduce myself. I am Samantha Gaden and I am the Neurofibromatosis Specialist Advisor for Liverpool and the North West region. I have already started working with many adults, young families and I have been liaising with schools. I have worked with one young man who is having quite a lot of difficulties at school. I worked with the school to explain what difficulties that he might be having with Neurofibromatosis. We were then able to implement some changes and he is now having a much happier time at school.

I look forward to developing my role as Neurofibromatosis Nurse few months and updating you with my progress. It also important that we continue to donate to the #OneMoreNurse Campaign, so we can get more nurses across the country for young people and adults."

#OneMore Nurse can change lives. Thank you for donating and changing lives for the better. 

Here are a few facts about Sam that you may not have known:

  • Sam became qualified as a learning disability nurse in 2001.
  • She has been a community-based since then, working with children and adults in many different specialities.
  • She also has substantial experience working as an LD nurse within CAMHS.
  • Her current role, as well as the being a Neurofibromatosis Nurse, is an ASD specialist practitioner at Alderhey Hospital - assessing autism in children and young people.
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NF1 and NF2 Team in Manchester
NF1 and NF2 Team in Manchester

World Neurofibromatosis Awareness Day

On Thursday, 17 May 2018, we celebrated World Neurofibromatosis Awareness Day. Our main aim is to educate the UK about Neurofibromatosis, one of the most common neuro-genetic conditions, with approximately 26,500 people diagnosed in The UK. Despite it being more common than Huntington’s Disease, Cystic Fibrosis and Muscular Dystrophy combined, very few people, including medics, have heard of the condition.

To raise awareness, we launched our second successive thunderclap campaign, and this year we enlisted 323 supporters who signed up to share one important message:

“Neurofibromatosis means Nerve-Tumour-Increase. Help support people, like young Emilio who live with this condition."

This message reached almost 190,000 people, covering 13 countries and 184 cities.

In addition to our Thunderclap, we also hosted other campaigns to help spread and increase awareness. The #ShareASelfie campaign, which ran throughout the day saw supporters, donors and those affected by Neurofibromatosis, in addition to other organizations from the around the world, take to social media to raise awareness by sharing their selfies and comments with us. We were delighted to be joined by the specialist teams based at St Mary’s Hospital in Manchester and at Guys and St Thomas’ Hospital in London, as well as our own network of NF Specialist Nurses. We are so grateful for their continued support as without these medical teams we would be unable to provide medical support and care to those affected by Neurofibromatosis.

In the evening the #ShineALight campaign spread across the UK, with 93 strategic and iconic buildings lighting up in blue to spread awareness of the condition.

On behalf of all those in the UK diagnosed with the condition, their families, and support networks, we are incredibly grateful to all those individuals, organisations and buildings that joined forces with us to raise awareness of Neurofibromatosis.

Guys and St Thomas Neurofibromatosis Clinic Team
Guys and St Thomas Neurofibromatosis Clinic Team
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We won an award from GlobalGiving UK!

Christmas is a time of giving, and we are so thankful for your donations towards One More Nurse. As a result of your donations, GlobalGiving UK has awarded The Neuro Foundation with a £1000. This is entirely down to you and we could not be more grateful. This award is so important to us, as it brings us closer to our goal of providing a new region with a Specialist Neurofibromatosis Nurse.

We ended our #OneMoreNurse End of Year Campaign with a bang, all thanks to GlobalGiving UK and you!

In November and December, we encouraged people to help us grow our Specialist Neurofibromatosis Nurse Network. Globalgiving UK launched a campaign to help boost donations, all monies we received under £150 was 100% matched funded by GlobalGiving UK. More than 50 donors from across the world donated to the One More Nurse campaign! We received over £4,000 in donations which helped to achieve our overall goal, and donations are still coming in.

Did you know?

Those of you who donated a minimum of £5 support around twenty-five doctors a year. Our Neurofibromatosis Medical Guidelines are sought by even the most experienced doctors and specialists. Your donation allows us to continue providing with these crucial guidelines, that have been vetted by the some of the world’s leading consultants. Five pounds could be the difference between someone’s local GP not recognising Neurofibromatosis or catching it early and potentially minimising the impact of the condition.

A massive thank you for your support!

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What a year!
What a year!

We started this by dreaming of a better tomorrow, but we viewed it with caution!

In November 2016 when we began the #OneMoreNurse campaign, we took precautionary measures. While we asked you to help us raise £20,000 to help fund a new nurse; we were also building up our first ever crowdfunding campaign. Therefore we set internal expectations that would allow us to make the most of any money raised – even if we didn’t hit the £20, 000 target.

Well, you put an end to that way of thinking! You’ve donated over £14,000 since February this year alone; over £50,000 overall, and we’ve now installed two new Specialist NF Nurses, thanks to you.

We’ve received donations (by this point) from many corners of the world. We’ve received donations of all sizes - £5 to many thousands! Due to the demand for a better NF Specialist Support Service in the UK, and the overwhelming generosity of donors like you, we’ve exceeded our original goals and have already placed two new Specialist NF Nurses: Mel Murrell in the West Midlands and Sam Gaden in the North West are now in post and undergoing training to help people cope with their NF and improving their lives. We now know that we really can cover the whole UK with your support.

 We’ve got a brand new match-funding opportunity coming up, and so we are relaunching #OneMoreNurse accordingly.

Between us, we can grow the network further. Christmas is one of the busiest times of the year for fundraisers, and so we want to give the campaign the relaunch it deserves! And, as if they were reading read our minds, GlobalGiving has launched an amazing campaign for us to help boost your donations.

 29th November – 31st December: OneMoreNurse Year-End Campaign!

  • All Recurring Donations pledged in this period, under £150, will be matched 100% by GlobalGiving!  

GlobalGiving is also offering The Neuro Foundation the opportunity to win awards worth anywhere between £80 - £1130 that will also go towards our #OneMoreNurse total.

  • The awards will be judged on the following:
  • Most unique donors (we need a minimum of 40)
  • Most Money raised (we need a minimum of £3750)
  • If we are one of the first organisations to reach £7550
  • If we are one of the first organisations to reach 50 donors

Please help us to deliver the best present possible this Christmas!

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Firstly, a few words of appreciation to all of those who have been donating and supporting this campaign. We have some more good news!

BRAND NEW region of the UK covered by a new Specialist NF Nurse

The new nurse will be based at Alder Hey Hospital in Liverpool.This is a very welcome extension to the Specialist NF Nurse Network. This means, that The Neuro Foundation will be providing support to people, schools, GP's and many more in the North West, where this support has unfortunately been lacking for some years.

NEW NF Nurse in the West Midlands!

We are currently short listing candidates in the West Midlands. In the West Midlands, there is a high concentration of individuals with NF and the workload outweighs the resources that they can provide in that area but with a new nurse that can change. 

Watch this space!

These are both huge results for us and are entirely down to donors like yourself. We want to issue many thanks, to those who have been supporting this campaign. Karen Cockburn our Charity Director is also in negotiations with a further NHS Authority where there is no cover, so watch this space for more information.Thank you again, to all our donors. Please continue to share and donate to this campaign. Every penny enables us to take steps towards our goals to cover the UK with the support needed. 

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Organization Information

Nerve Tumours UK

Location: London - United Kingdom
Website:
Facebook: Facebook Page
Twitter: @NerveTumoursUK
Project Leader:
Markus Bell
London, United Kingdom

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