This week marks Mary Rose’s third year at Findacure. In today’s blog she looks back on her time here so far and shares some of her favourite memories through the art of photography.

This week I’m celebrating my third-year anniversary here at Findacure. Wow! I can honestly say this has been the most exciting, interesting, and rewarding time in my career. Since joining Findacure in 2016, I’ve managed more than 20 different events and seen them grow from strength to strength, I’ve worked alongside five fantastic colleagues, and had the opportunity to meet hundreds of members of the rare community who are just as dedicated as us. In the same time, I’ve also become a home-owner, adopted a beautiful ginger kitten (who is inarguably the love of my life), and changed my hair colour more times than I can count. Needless to say, it’s been a whirlwind. 

Three years ago, in my introductory blog, I wrote, “I’m a big fan of taking photos and can almost always be relied upon to have a camera on my person”. This is still 100% true. I am, and probably always will be, that person in the corner annoying everyone by taking pictures at every opportunity. There’s a lot of debate these days over whether taking photos ruins ‘living in the moment’, but I personally feel this is nonsense – why does it have to be either-or?

For me, there’s not much better than that warm fuzzy feeling you get when sifting through photographs. I can look at an image and instantly remember where it was, what we were doing that day, and what joke we shared just before it was taken (ask any of my friends or colleagues and they’ll confirm how scary my recall is). So, in line with my love of sharing memories, I thought I’d approach this week’s blog a little differently. Instead of writing a big long piece about my time here, I’m sharing some of my favourite photos from the last three years, and a little insight into the moments behind them. 

 

My first team selfie! For some reason, despite being the shortest team member by a country mile, I became the designated selfie taker – a tradition that continues to this day. This photo also sparked the line “MaRo’s tiny powerful fists” – which is usually used in the context of ‘I get stuff done’, or ‘don’t mess with me’, depending on the mood I’m in. 

Back in September 2016, we held out first fundraising Gala Dinner in Cambridge. This was a super fun event – we had a delicious three course dinner, a live Jazz band, casino games and a raffle in which I won first prize! (I promise it was not rigged). 

When I joined Findacure, we were in the very early stages of planning our Midlands Rare Disease Showcase, an event which started the Rare Disease Showcase series. It was a hugely enjoyable, yet challenging, event to plan and a big lesson in what does and does not work well. It was also the first time I ever gave a presentation to the rare community! Hats off to me. 

Christmas is always fun at Findacure. We share an office with some wonderful organisations, including our friends at AKU Society, which means every year we all get together to enjoy Christmas dinner, drinks and Secret Santa. The more the merrier!

March 2017 saw us enter the Cambridge Half Marathon for the first time. I somehow manged to convince my very good friends Patsy and Michael to take on the challenge, and between them and the other fantastic fundraisers they raised an amazing £2,700 for Findacure!  

Findacure on tour! In May 2017, we squished ourselves into my little car, blarred out the 90’s pop hits (much to Rick’s dismay) and headed down to Cardiff for our second Rare Disease Showcase. Following a great networking event, we managed to find time to explore the city and take on an ‘escape room’ challenge. 

In attempt to take some new, professional, photos for our website, we somehow ended up with this. And it’s hilarious. 

We love raising awareness at Findacure – especially if it means dressing up or bringing in a cuddly friend! These are some of my favourites. 

Findacure and our buddies at AKU Society headed to Vienna for the 2018 European Conference on Rare Diseases. I loved getting to meet the wider rare community and hear about projects taking place across the continent, and we even managed to squeeze in a visit to the nearby fairground for a turn on the ‘highest swing ride in the world’ – an experience I have no desire to repeat. 

In October 2018, we headed north for the Glasgow Rare Disease Showcase – my favourite event yet! It was an challenging and ambitious task from start to finish, with many hours spent wondering how we would even get ourselves and all our stuff there. But, the on-day atmosphere was fantastic and, in true Findacure fashion, we managed to find time the next day for another ‘escape room’! 

Following 2018’s debacle with ‘The Beast from the East’, I was exceptionally nervous for this year’s Drug Repurposing Conference. But, thankfully, the snow decided not to test my patience again and our event went ahead with great success. Drug repurposing holds so much potential for rare disease treatment and I love seeing the community come together to explore it further.  

In May, we finally launched our new Patient Engagement Committee. Listening to the voices of your community is so important in rare diseases and I am delighted to see how dedicated and passionate our new committee members are. After weeks of planning, our kick off meeting was a huge success and I’m very excited to see where we go from here.

Phew! Thanks for sticking with me this far. Its been a fab three years at Findacure and I can’t wait to see what happens in the fourth!