Launch of new UK Charity
To Beat Trigeminal Neuralgia
The Facial Pain Research Foundation’s
By Nia Weller
My husband suffers from Trigeminal Neuralgia and for 10 years we were lucky enough to have a life free of pain, following a successful MVD surgery in 2004. Then, in 2014 the lightning struck again and my husband was once again knocked to his knees in agony.
But we were optimistic – surely treatment and understanding of this horrendous condition would have moved on in 10 years? New advances would have been made?... As we searched the internet, we found the same websites of 10 years ago, the same treatments of ten years ago, the exact same drugs as ten years ago. We were dismayed and crushed - how can “the most painful condition known to mankind” go un-researched?
Just when it seemed there was no hope, we heard about the work of the Facial Pain Research Foundation and their goal to find a cure for TN. Finally, an organisation not just telling sufferers to learn to cope with the pain, but who are offering a real chance of a cure and hope for the future.
We immediately offered our support to the FPRF and pledged to raise funds. Our first fundraising event was a coast-to-coast cycle ride across the UK in Sept 2015 which raised an amazing £1500 to kickstart our cause. At this point we started to think bigger…fundraising is difficult at the best of times, but it’s significantly easier if you’re operating as a registered charity with the associated benefits of:
- increased credibility
- eligibility for donations from grant-making trusts, local government, businesses & corporations
- boosting of UK taxpayer donations via GiftAid
- ability to use official sites for fundraising events, such as JustGiving
- eligibility for company Charity 'Money Match' schemes
- ability to receive donations via payroll giving (Give As You Earn scheme)
So we decided to set up a UK charity dedicated to raising funds for TN research and raising awareness of the condition.
In order to register as charity in the UK you have to have an annual income of £5,000 so the next 12 months were dedicated to fundraising events to help us reach this target. Thanks to the support of Shepshed Running Club, DHL, The Horse Shepshed and RBS Kegworth, we raised a total of £6,600 and were eligible to apply for charity status.
On 10th Jan 2017, we were very proud to announce that 'Beat Trigeminal Neuralgia' is now an officially Registered Charity in England & Wales (Registered no. 1171059) with all funds going directly to FPRF research.
Here is the UK Government overview of GiftAid:
In summary, UK taxpayers that make a donation sign a declaration authorising BeatTN to claim an additional 25% in 'GiftAid' from the UK government.
Now all we need is more people in the UK to join our cause!
If you are already a UK supporter of the FPRF please get in touch and become a member of our organisation.
- Follow us on Facebook and Twitter
- Here is the link to our Facebook page: https://www.facebook.com/beattn
- Email us at
- Our official Trustees are as follows:
- Chairman - Stuart Weller
- Treasurer - Gavin Aldridge
- Secretary - Carol Weller
- Trustee - Phil Barratt
We need people to help with fundraising, publicity and awareness campaigns.
If you have a fundraising event you'd like to organise in aid of BeatTN, please do get in touch. It doesn't matter how big or small, every little bit helps.
Together we can make a difference!