A Trustee’s look back over the past year

February 28, 2021

As we take a look back over this past year it’s fair to say it’s been a year like no other!

In January 2020 we welcomed Leanne to the office team. Preparations for Facial Palsy UK’s first comedy night, Face UP! to Comedy and awareness week were underway. The annual report was being written up, support groups were running face to face and a new support group video was added to the website. The latter was with thanks to our Cheshire & Mersey Support group with funding from The Police Mutual Foundation.

We held our Face UP! to Comedy fundraiser on 29th February (Rare Diseases Day!) at Lingfield Park Resort in Surrey.  The evening included a delicious meal, three comedians as well as our very own Alex Barker performing on the stage. We had games in between, a silent auction as well as the chance to bid for one of Susie Cave’s wonderful dresses. A great night was had by all and the event raised £10,060 – a wonderful start to Facial Palsy Awareness week 2020!

Facial Palsy Awareness week ran from 1st-7th March 2020. Personal stories and experiences were shared, radio interviews were given and poems composed by some of our volunteers and supporters. We thank everyone who took the time to like and share our posts on social media and are thankful to all our dedicated fundraisers at this time. We really couldn’t do it without you.

The first lockdown in March stopped some of our main fundraising events and as a small charity we had to prioritise what was essential to remain afloat. We had to suspend face to face support groups but thanks to successful funding applications we were able to hold our support groups meetings online from the summer onwards. We were very grateful to everyone who set up direct debits and helped with donations to keep us going and of course those who continue to give over many years.

Work began on turning our Children’s book ‘’When Teddy lost his Smile” into an e-Book, as our shop had to close due to concerns around the pandemic. It’s now available to read free online.

With the pandemic taking over the lives of all, it’s impacted each and every one of us in many different ways. The impact on the charity has been huge, we took the decision to furlough one of our two members of staff and to give notice on our office space, moving to a virtual office to save money. With many people struggling to see their GP it was vitally important we continued to provide our services for those newly diagnosed, those misdiagnosed and those struggling with delayed hospital appointments to manage a chronic condition.

We were unable to hold family days and work on the health professionals website was paused. However, new volunteers came forward to help with writing stories for the website and other tasks, making a real difference to what we could achieve.

When we started 2020, who would have thought we would be wearing face masks, social distancing, painting rainbows and standing on our doorsteps clapping for deserving key workers and much more?

A lot of time has been spent on writing funding applications and applying for grants to bring in enough money so the charity could survive the year. Fundraising was mainly all online; Eric, Freya B and Nicola took part in the nationwide 2.6 challenge where fundraisers could create their own challenge by doing things 2.6 or 26 times. Eric (93) split donations between Facial Palsy UK and another charity by presenting a quiz of 26 questions about his favourite football team, Peterborough United, with a prize for the most correct answers. I have got to say they were very hard questions!

Other much needed fundraising took place throughout the year – some examples include Facebook birthday fundraisers and the team from Sayvol set themselves a challenge to complete 2,500 kilometres in 30 days and raised a whopping £4,435. Freya H and her dad decided to cycle 325km to Paris when the lockdown lifted over the summer raising £1,140! In December, our regular fundraiser Darcy (11) was determined to still do something and raised £263 with a raffle. All absolutely fantastic given that it’s such a hard time for fundraising and us all.

In October our one remaining employee for the charity had unfortunately contracted Covid!

We didn’t want to close the charity as there were still many people that needed our support so the trustees took over and answered the requests for support over the month. I personally found this quite daunting as I wanted to make sure I was saying the right thing. It shows just how much time and effort goes into every reply. I also know I have so much more to learn about the many different causes of facial paralysis. But it reminded me, just how important the charity is for so many people.

Heading into 2021 there is still a tremendous amount of work to be done to ensure that Facial Palsy UK can continue its work. We have learnt so much from listening to people attending our virtual support groups which is helping us shape our priorities and improve what we do in (hopefully) a post-Covid-19 world.

As we approach Awareness Week 2021 we recognise that it’ll be different to our usual blast of activities across the country. We have been given a hopeful fundraising boost by a group of friends who met at Lincoln University (Charity Lads). They have come together to support our work after a friend was diagnosed with Ramsay Hunt syndrome. Hearing that we needed to raise £25,000 to keep afloat over the next 18 months they made it their mission to raise as much as possible and have hit £5,000 already! Sayvol Environmental & Building Services Ltd have also just agreed to fund our future family days as soon as restrictions allow. More volunteers are also coming forward who we look forward to working with in future. We are continually overwhelmed by everyone’s support.

In such unprecedented and challenging times, Facial Palsy UK has survived this last year, being here to provide individual support, detailed information on our website, switching to online support groups and other new ways of working. And we hope to continue.

From all of us at Facial Palsy UK to all of you: we thank all our supporters, volunteers and fundraisers for your patience, your amazing fundraising efforts and your continuing support.

Mandy Brailsford, Trustee.

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