This week’s blog continues our “Meet the team” blog series, introducing our brilliant fundraisers to the Findacure community.

On 25th August, Charlotte Proud will be taking on a huge challenge to raise money for Findacure – braving a 800 metre swim in chilly Loch Lomond followed by a 5k run! Please show your support by donating to her fundraising page.

Hi Charlotte! Can you tell us a bit about yourself?
I’m Charlotte and I’m 26 years old (turning 27 next week!). I was diagnosed with Osteogenesis Imperfecta when I was 2 years old (also more commonly known as Brittle Bone Disease) although it is thought that I could have been born with fractures.

I’ve had around 50 fractures, although this is an estimate as I have a high pain threshold. When I was 4 years old, I fractured my arm, although nobody actually knew at the time as I didn’t complain about any pain. It was only a few weeks later when I fractured the same arm but in a different place, that it was visible to see on an x-ray.

Osteogenesis Imperfecta is a genetic disease that is estimated to affect 1 in 15,000 people. In OI, the collagen can be of poor quality which means that it affects bones, tendons and ligaments. My Dad was also diagnosed with the same condition, although only shortly after I was. My Dad was just labelled as being accident prone as he was growing up.

Why did you choose to fundraise for Findacure?
Living with a rare disease can feel incredibly isolating at times and definitely has a psychological impact. This is especially true with Osteogenesis Imperfecta because it is really difficult to explain to others and I just look exactly the same as everyone else.

In 2017, I had the most amazing opportunity to speak at Findacure Rare Disease Showcase held at Centre for Life in Newcastle Upon Tyne. I gave a presentation on a patient’s perspective on what it is like to live with a rare disease.

I feel like this was a life changing day as it gave me the opportunity to network and meet other people with a rare disease – I even met a person with the same condition, who I still keep in touch with, and also my Consultant that I see for regular bone reviews was in the audience. That day made me realise that I wasn’t alone in living with a rare disease and the incredible work that Findacure does.

Have you taken part in any similar events before?
I’ve never taken part in an event like this before. It was after the London Marathon that I completed in April this year, that I decided I needed a new challenge (I’m sure my family think I’m mad but they are always willing to support me in everything that I do). I’ve always enjoyed swimming so it sounded like a great combination. I had planned on taking part in the Cambridge Half Marathon earlier in the year for Findacure but managed to fall over on the ice and split my head open – luckily no fractures but I ended up with severe concussion which meant that I couldn’t run for several weeks.

What is your favourite music to run to?
My running playlist is quite long and definitely random but it helps keep me going (in 2018 so far I’ve ran 468 miles). Some of my favourites include Florence and the Machine and Calvin Harris. I also have some favourite songs for extra motivation when I feel that I’m struggling. These are a great pick me up in a race and include, Beautiful Day by U2, Heroes by David Bowie and of course, Proud by Heather Small.

Where is your favourite place for a swim?
I recently practiced my outdoor Swimming in a little place called St Abbs, a fishing village north of Berwick-Upon-Tweed. It was a beautiful place to swim except that I didn’t have my wetsuit with me and decided to just go swimming in the Harbour with my running shorts and t-shirt on. It was absolutely freezing! My younger sister was watching on (more sensible in a wetsuit) and cheekily pointed out that I now hold the record for the most “it’s cold” said in 10 minutes!

We are exceptionally grateful to Charlotte for her support and wish her the best of luck for the big day! Please show your support by donating to her fundraising page.