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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“Charity Shave Off” for NF in Northern Ireland
Janice and her family recently held a charity shave off in Northern Ireland. Find out more about the event here:
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Blackpool Magic Convention 2020
Find out more about the convention in aid of NTUK and how you can get involved here:
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Reflections on 2019
Check out our reflection on what we feel was an incredibly succesful 2019 for the charity:
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Helen’s Story as told by her Mum Pauline
Due to her NF1, Helen has faced several struggles. Mum Pauline has openly shared her daughter's experiences with us here:
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Nicola’s NF2 Journey
Nicola creates her own YouTube videos to help promote NF2 awareness. Find out more about her NF2 journey here:
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Making the Future of Work inclusive of persons with disability
Check out James' recent presentation at a conference in Geneva highlighting issues of "face equality" in the workplace
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The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing
Find out more about the debate recently undertaken at The Royal Society here:
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Appearance Matters: Prof Diana Harcourt and Maia Thornton
Find out both Diana's and Maia's views on their work and the importance of their work for people with NF:
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Jane Frances
Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF
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