We’re Here for You, Our NF Community.
09 September 2020
Hello Everyone,
I just wanted to say a very big thank you to absolutely everyone, who has helped us to keep the charity running as usual: by their fundraising efforts; assistance and guidance; and also those who helped to keep up our spirits in the “virtual” head office, over the last six months. Members, supporters, friends, families, the NF medical teams at St Mary’s and Guys & St. Thomas’ and even our local MP! Thank you, to each and every one of you!
We are not sure what the next six months, or even the next year, will bring, but we’re here to take your calls and help where we can. This is a whole new territory for all of us, so please bear with us if things take a little longer, we will all get sorted in the end, but do let me know if there are any major issues, and we will try to help.
We are aiming to move back to the office in the next couple of weeks, a very different looking office as we will all be working behind screens, etc, and apparently you can no longer even share biscuits …….but it will be lovely to be back there with the team!
The shop distribution should return to normal, which is especially important as we will soon launch the sale of our Christmas Cards and other festive items! In the meantime, if anyone has any imaginative and inspiring ideas about how we can raise funds safely in this new, odd world that we live and work in, please do let the team know.
Please do continue to follow the Government guidelines and do take care.
With my very best wishes,
Karen
Filter News
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New research into non-discrimination law
Durham University is looking for participants who look different due to their health complications. such as NF.
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Letter from our new Chair
A letter detailing the vision of our new chair, and the future of the charity.
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Launch of Nerve Tumours UK
Following a major strategic review, the Neuro Foundation charity is now known as Nerve Tumours UK.
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NF1 research award first for UK consultant
Dr Shruti Garg is the first non-US resident to receive NF1 $555,000 research award.
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Polly’s Story (as told by Mum Emily)
"Despite being on weekly chemotherapy she is a happy child and never fails to inspire us all"
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EDEN Study Progress Report
The EDEN study has enrolled 30 babies and toddlers to understand how infants with NF1 develop.
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Ella’s story
Have a read of Ella's story here. An uphill battle which we know she will turn around!
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Grace’s Story
Have a read of Grace's story and she overcame her insecurites surrounding her NF
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Helpful Charities
Find some of the other helpful charities that may be able to support you here
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