Amanda Fearn-Banfield is a creative wordsmith. This wonderful British fireball is not only the behind-the-scenes force responsible for navigating The Silent Bleed Superficial Siderosis Charity through the complexities of the UK but also keeps the charity website, www.thesilentbleed.co.uk fresh with the latest information.
If you visit the Silent Bleed website you will find they offer an online donation opportunity. They will happily accept one-time donations or if you are generously inclined you may now schedule a regular monthly gift. https:/www.thesilentbleed.co.uk/donatedonate
Amanda, tell everyone about your background.
I’m currently a freelance copywriter – so that’s words for websites, brochures and even beermats and bag labels in the past. I work with startups and large companies – the agency I work with has just landed a contract to rebrand a city, which should be interesting. I spent years working in office management, which helps with the practical side of running the charity.
How would you describe your role at the Silent Bleed?
I’m one of the founders and I’m a trustee. I do as much research and writing as time allows – I also have a family to care for. Most of my charity time these days is taken up with making sure we’re compliant with the UK Charities Commission and keeping the website up to date.
What inspired you to help set up the charity?
When my fellow trustee and founder, Jason Roberts, was first diagnosed, there was very little information about superficial siderosis out there. Thankfully, blogger Dave Hill had started the ball rolling with his site but I needed to find out more about treatment options and where to go next. It was Jason’s idea to start the charity so that no-one had to feel that alone again.
What does the Silent Bleed Superficial Siderosis charity do?
I see our role as a hub. Becoming a registered charity involved hours of work preparing lengthy documents but that was back in 2016 and now things are moving along really well.
We’re hoping to expand our grant-making scope this year as until now, most of the money we’ve raised has gone to Dr. Levy at Johns Hopkins for research. Because the way we operate is tightly regulated by the UK Government, I think it provides reassurance that we’ll handle other people’s kind donations with care and respect.
Our website is also home to Dr. Levy’s Q&A. With a condition as rare as superficial siderosis, experts are hard to come by, so by providing this service, people can pose questions, we send them off and Dr Levy replies. It’s a well valued resource, I think.
We have a small but dedicated support team for carers, family and friends of those with superficial siderosis as well. Janice Toovey, who has a son with the condition, has been running support on our Facebook page for a while now. Helping countless people through a very difficult time. I’ve met her and her son a few times now, they’re lovely people.
What’s it like working with Jason Roberts?
Exhausting. I can’t keep up with his ideas – but he does make a good coffee and he’s always got a packet of jaffa cakes to hand. He’s a professional fitness instructor so he’s helped me no end with my outdoor pursuits.
What’s your vision for the future?
A cure, obviously, but also more research into the cause – why some people with a spinal/cerebral bleed develop superficial siderosis but the majority don’t. We met with Dr Levy and Prof. Werring at Queens Square a couple of years ago and would like to think that there will be greater collaboration in the future.
For now, we’re looking to up our game with fundraising and awareness. We publish a leaflet and of course, there’s the website but we’re hoping to reach out more with social media in the coming year. We’re also looking for new and innovative ways to fundraise as well as getting more people on board to help. We’re a small team with big dreams.
Apart from the Silent Bleed charity and your writing career, what other interests keep you happy?
I’m an avid plus-size runner, cyclist, rambler and blogger. I love being outside, which is just as well because I have an allotment*, which keeps me busy. Once a year I go away to a retreat in the Dordogne to write my novel about love, loss and peaches – my aim is to finish it this year.
I have two children, who take up much of my time and I go home to my family in Cornwall, where I grew up, as often as I can. My husband and I are film buffs but with so much going on, we don’t get to go to the cinema very often these days!
*Note for our US readers, an allotment is a vegetable/flower space British city dwellers can apply for to keep a connection with a garden.
Amanda Fearn-Banfield is a freelance writer, sensory tourist, runner, gardener, and budding novelist. She and her husband enjoy life with their children, family
Contact Amanda at https://www.thesilentbleed.co.uk