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"For me, fundraising is about providing people with experiences and bringing communities together”: Emma shares her journey of fundraising for the Trust
Growing up with CF 
I was diagnosed with CF at eight weeks old, so I really don’t know any different when it comes to life with CF. I never have – and never will – let CF stop me from living a full, enriching life. CF is just a part of who I am – I have it, it doesn’t have me. Growing up, I remember having to get up for school earlier than my friends due to the need for physio, and I still HATE getting up early to this day! I do have fond memories of physiotherapy, though – my mum used to read to me whilst doing my physio when I was little, which then led to me reading to myself to pass the time. I’m a massive lover of books, reading, and all things story and creative writing based, and I’m sure having that time as a youngster contributed to that!
Fundraising for the Trust
As a kid, I did a lot of fundraising for CF. When I was 10, I roped all my class and friends into joining me for a Blue Peter Bring and Buy sale. They used to have a chosen charity every year, and one time Cystic Fibrosis Trust was the chosen charity. Because I grew up in such a close-knit community, my mum used to organise fundraising events for us. I did things like sales and fashion shows, and it was a fun way of raising money and awareness.
When we were in year 5, I did a project on CF, and when we our marks back, my friends led me into class blindfolded, and I saw I had got an A++. My granny sent my project off to Blue Peter, and they sent me a Blue Peter badge.
As an adult, I don’t fundraise as much, but saying that, my partner did the London Marathon, and I organised eight local events to help raise money. We did various things across multiple towns in the area, including musical bingo, quiz nights, a clairvoyant evening, a ghost stories event, and a pie and pudding evening.
These were all in a fairly short space of time, with the first event taking place on 13 March and the last during the week of the Marathon in April. We managed to raise almost £8,000. It was a lot of work, covering a fairly small area, and we ended up doing a raffle at each event. I lost sleep over the first raffle, worrying we wouldn’t have enough prizes, but I needn’t have worried as people ended up bringing extra items anyway.
My hometown of Rhayader, in Mid-Wales, is a very special little place. Holding events brings the town together and there’s a real sense of community spirit, which I love.
Emma
The importance of fundraising
I’m hugely passionate about fundraising, primarily because it helps so many people in whatever capacity it’s done – whether it’s for the Trust or other local groups and charities. People benefit from funds raised in ways that wouldn’t necessarily be possible without it. But for me, it’s also about providing people with experiences and bringing communities together. My hometown of Rhayader, in Mid-Wales, is a very special little place. Holding events brings the town together and there’s a real sense of community spirit, which I love. For people to part with their hard-earned money, especially in the current financial climate, there needs to be a two-way relationship and something they can be rewarded with – whether that be a delicious cake, a good night out, or a sense of achievement for completing a challenging event. It shows we care and appreciate what people are willing to do for us, that we value their time and money and want to return the favour
with something enjoyable for them.
Performing in the local panto
I’ve been in my local pantomime group, Rhayader Players, for almost 27 years, since the age of nine, appearing on stage in various roles. I am also a writer/director, and the first panto I wrote was The Princess & the Ogre back in 2012, and this year I’m writing and directing Let It Snow, a wintry tale based on The Snow Queen.
Along with other members, I helped to set up The Wye Kidz, Rhayader Players’ youth theatre group, in 2019, and despite COVID-19 briefly pausing our activities, the group are now thriving once more and set to perform their first full-length production later this year. I also run a drama club for children in the local primary school.
I love the saying, ‘Dance as if no one were watching, sing as if no one were listening, and live every day as if it were your last,’ and I like to think I do just that. Not because I have CF, diabetes, and arthritis – but because I’m me.
Emma
The challenges of living with an invisible condition
In all honesty, I don’t see myself as having any kind of condition, let alone an invisible one. I’m me – I live life to the full. Regardless of health conditions, we never know how long we have on this planet, and I’ve got no time for moping around. Everyone’s life is a challenge – we all go through good times and bad times – and I don’t believe a medical condition should define me. I love the saying, ‘Dance as if no one were watching, sing as if no one were listening, and live every day as if it were your last,’ and I like to think I do just that. Not because I have CF, diabetes, and arthritis – but because I’m me. There’s always someone going through a much harder time than you, so be grateful for what you have and who you are. Embrace the good times, learn from the bad and keep moving forward.
What are your hopes for the future?
My boyfriend, Phil, and I love to travel and make the most of life. We’d like to visit many places, the States and Canada being at the top of my list. I’d love to do Route 66 one day and visit the Rockies. From a career perspective, I hope to continue my journey through the world of events and fundraising, and whilst I’m only in my current role for a year, I’d love the chance to pursue working for the Trust more in the future. It’s been quite humbling seeing the Trust from ‘the other side,’ and it makes me appreciate the fantastic work that’s done here even more so than I did before. I love to write in my spare time, and I have a small poetry collection published called ‘Dreamboats & Wishes’. I hope to continue with this passion in my spare time and become a published novelist down the line. I love crafting too, and I go through phases of doing so when I’m not quite so busy (which isn’t often!), creating bespoke cards and gifts.
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.
Fundraising carried out by our community helps us fund vital research and support those living with CF. Find out more about what you can do to help everyone with CF live a life unlimited.
