Awareness Week Fundraising by Kay Turner

July 19, 2015

In October 2012 I was hit by my second attack of Bell’s Palsy. It was at a particularly difficult time in my life and it left me feeling isolated and afraid. I spent hours trawling the internet looking for advice and support in the hope that maybe there was a miracle cure that I hadn’t yet found.

It was in April 2014 that I came across the website for Facial Palsy UK. I noticed that they held support groups for sufferers with the condition, and my luck was in – the next one was due to be held later that same week. I contacted Karen Johnson at the charity and asked if I could just go along. Karen put me in touch with Wendy, the group’s organiser, who made me feel very welcome.

That Saturday I went along to the meeting, a little nervous and unsure, but desperate to speak to someone who understood this debilitating condition.

For the first time since the onset of my condition, I felt ‘normal’. I chatted to people who were in the same position as myself. Wendy had a wealth of knowledge! It was enlightening and encouraging to listen to someone who understood the workings of the face and knew about treatments available.

It was after that first meeting that I decided I wanted to help raise money for the charity. I wanted more people to have access to the support available, and in order to do this the charity needed funds.

And so my involvement with the charity began. That first summer I managed to raise £1800 by various fundraising activities, and I then set about thinking of ways we could raise awareness of the condition and the charity. I truly believe that by raising awareness of the condition and making information about the various types of treatments available, we can help people to feel reassured at the start of the onset of the condition.

It was one evening as I sat working on different fundraising ideas that I had the idea of an awareness day. I immediately emailed Karen with my suggestion and some fundraising ideas such as Dawn Walks, printed balloons and so on. I suggested that a good time for our awareness day would be during the spring to represent new beginnings and a theme of ‘facing a new day’.

To my amazement the trustees of the charity agreed to take my ideas on board and the first ever Facial Palsy Awareness Week was launched for 1 – 7 March of this year. I was delighted and set about planning fundraising activities for that week.

I spoke to people quite regularly about my condition and the support I received from the charity, as well as my ideas on fundraising. I didn’t want to hide away, I wanted to be open about the problems I experienced with the residuals left behind after the Bell’s Palsy.

Kay’s Office Door

I had several activities planned for that week. I decorated the door to my office with balloons, purple borders and the leaflets from the charity. I sold wrist bands, trolley token keyrings and balloons.

Lettie, a young lady who attend the church I go to had approached me before Christmas to say that she wanted to do something for the charity.  She said that she’d seen things I’d written on facebook about the charity and wanted to help. She asked me why I was so interested in this charity, and so I told her that I’d been affected by Bell’s Palsy twice and it had left me with some unpleasant effects and with me being unable to smile properly.

Lettie was shocked that something which was so devastating to people was so unheard of. We chatted for ages about the effects it has, what it is like etc. Lettie said she would like us to do a concert to raise awareness and money for the charity, and so we set about organising it.

Lettie is a very talented young lady and so I asked her if she would write a song. She told me that she’d already decided it was something she wanted to do. A few hours later the task was complete! She had written a song especially for us!

We decided to ask our Pastor Jason Greene, and his wife Nicola, if we could hold the event at the church, and to our delight they agreed!

The concert begins

The event took an awful lot of organising – more than I could ever have imaged. I wrote a speech, and two poems which I read during the course of the evening. Paula, another of our group members, came all the way over from Manchester to support and help us! Paula read Sherry’s poem and another one we found lurking around on the internet which was all about the importance of a smile.

Raffle Prizes

We had a raffle – I spent hours contacting local businesses either by email, telephone or by letter, asking for raffle prizes, and I was delighted at the response I got. There were lots of prizes! I also managed to get my hands on a signed photograph of the Coronation Street cast – this raffle alone raised £77.

Lettie had organised the Cadets Band to come along and play, and there were lots of different artists singing, playing instruments and just generally having a great time!

Members of the church baked cakes and worked in the kitchen selling drinks and refreshments. People also helped to sell raffle tickets and take money on the door. We also sold wrist bands, balloons and trolley token keyrings.

The Pastor closed the evening with a very powerful speech. He asked people to think about how we take things for granted, the little things which we all just expect to be able to do all the time. He said none of us go to bed at night expecting that we wake up in the morning our lives will have changed beyond belief. And he asked everyone to think about how they would feel if they went to bed that night and like Paula and I, they awoke the next morning with their lives turned upside down.

Kay compering

It was an amazing night – filled with emotion! To hear someone so young speak about a condition with such maturity was so moving. To see so many people give of their time to help us was more than I could ever have asked for. To have all those people come out of their homes on a Friday evening to support our charity was amazing!

Over the course of the week I raised over £520 – but more importantly I raised awareness of a condition which affects so many people in the course of a year.

This is how I ended my speech on the evening:

 “I believe that one day all the hard work we are doing will pay off. My hope is that one day everyone will have access to the correct treatment, without having to jump through hoops to get it. People will know about the condition and understand it, and they won’t feel isolated, frightened and alone.

That is my hope. And that is why I will continue with my work. I will do whatever I can. Because someone, somewhere, at some point will benefit from it.”

Kay Turner, Manchester

Currently there are no nationally funded trials investigating treatments or cures for facial palsy. This leads to uncertainty with regards to best practice and treatments. Despite recognition that conditions such as facial palsy are neglected in terms of research funding, this situation is unlikely to change.

Please DONATE to our Research Appeal so we may give every person affected by facial palsy hope that there may one day be a cure.