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This week, I celebrated my fourth year at Findacure. What a whirlwind it’s been! In that time, I’ve held three job titles, worked with seven different colleagues, planned well-over 30 events, and changed my hair colour more times than I can count. In this week’s blog, the team asked me to look back at my first presidential term four years and share some of my hopes for the next.

What have been your top three highlights in your four years at Findacure?

Number one: my team!

Working in a small charity comes with a whole heap of challenges, and if there’s one thing I’ve learned, it’s that the people you work with can really make or break your spirit. I’ve been very fortunate to have such wonderful colleagues (and neighbours at AKU Society) for my entire Findacure journey – people who share the same energy and enthusiasm for our work but are also great fun down the pub on a Friday evening!

Number two: the Rare Disease Showcase Series

When I joined Findacure back in 2016, we were in the very early stages of planning our first Rare Disease Showcase in Birmingham. Back then, we didn’t know if this would be anything more than a one-off event. Since then, however, the series has gone from strength to strength and toured around much of the UK, including Cardiff, Newcastle, Glasgow, Manchester and of course, our annual event in Cambridge.

Because I’ve been involved in this right from the beginning, it holds a very special place in my heart and I’ve really made it my own. I have loved every moment of developing this series – even though the logistical challenges of some of these locations have driven me quite barmy. In 2020, we had hoped to take the series to Bristol but unfortunately a certain pandemic had other plans. You’ll still see our showcase series returning in autumn, but it will all be a little different. Expect to hear more soon!

Number three: getting out and about! 

I’ve really enjoyed being able to go and explore so many rare disease events, both home and abroad. These have always been a lot of fun – whether it be learning about new developments, hearing powerful and moving stories, or just seeing all the friendly and familiar faces of the rare disease community. Some top ones for me have been Cambridge Rare Disease Network’s annual summit, The European Conference on Rare Diseases in Vienna and World Orphan Drug Congress in Barcelona. The international trips are a particular highlight and whilst both have been incredibly informative events, they have also been a great opportunity to bond further with my work buddies – and come home with a few stories to tell! 


What’s the most ridiculous thing you’ve had to do for the charity? 

Ha! There’s probably a few of these over the years if I’m honest. One of the more recent ones has to be when I spent a considerable amount of time staging a fake video interview and team meeting for a bunch of toy bears. I spent ageeeees making sure the scenes were all set up correctly and then working out the best angles to take photos from (no half jobs around here!). All in aid of Bears4Rare day of course, and I couldn’t mark the day without giving it the proper justice it deserves – plus, it was a lot of fun!


Of the plethora of events you have organised which has been your favourite, and what was the worst moment at an event?

What a tough question! I definitely have a few favourites; it’s so hard to narrow it down to just one. If I really have to pick…it’s got to be the Drug Repurposing Conference back in February. 

This year, we really pushed the boat out to make sure the conference was bigger and better than ever before, and it massively paid off. We had our highest number of attendees yet, a huge exhibition space, top notch speakers and, most importantly, delicious food! The atmosphere and energy of that day was just brilliant. And it was such a fun event to organise! I have such a passion for event planning and there’s little more rewarding than seeing months of hard work and preparation come to fruition in one fantastic day.

I’m not sure I really have a ‘worst moment’. The 2018 ‘Beast from the East’ certainly threw up a few challenges – hitting the very week of our conference and questioning whether we’d even be able to make it to our own event (spoiler, we did).

But, if I’m truly honest, the worst moments for me are when the tiny little details don’t quite go the right way. I am a complete control freak – I don’t think anyone who knows me would disagree. Generally speaking, it’s a trait that’s quite handy in the world of event planning, but it does mean that when the small things go wrong – like forgetting to pack the ‘Findacure bell’, losing the ‘5-minutes to go sign’, or leaving a whole page of an event registration list on the printer (the horror!) – it makes me want to scream and crawl into a dark hole. These are the things that keep me awake at night!


What are your major aims for developing Findacure’s events and empowerment programme in the next four years?

Oh, there’s so much to talk about here. I’ll try to keep it brief.

For the Drug Repurposing Conference and Rare Disease Showcase Series, the major aim is clear – continue to grow, develop and professionalise these events and focus on making them a core part of the rare disease community calendar. I want our annual conference to become *the* event on drug repurposing in the rare community. And I want our showcase series to hit all major cities in the UK (and maybe even abroad!) and further highlight the fantastic innovation and progress taking place in rare diseases. I’ve made a big effort in recent years to heighten the overall attendee experience at these events, so finding new and interesting ways to continue this is definitely top of my list!

With the empowerment programme, I am really keen to increase the level of opportunities available to our patient group community, as well as the diversity of topics on offer. Within the next year, I’m hoping to introduce a ‘masterclass’ element into our workshop programme which will look at providing very hands-on, practical and bespoke training to small groups on specific subjects. Some early ideas include how to create patient group posters, public speaking, and designing patient information leaflets – if you have any thoughts please get in touch!

I also want to unify the learning experience for our beneficiaries: creating a one stop shop for them to go to and access all the help and guidance they need in their patient group journey. Step one of this is transforming our current e-learning portal into an online resources hub; with easier and more self-explanatory navigation, wider use of different learning mediums, and substantially more accessible. The ball is already rolling on this – expect to see more later in the year!


What’s been the biggest thing you’ve learned in the last four years?

The key to making friends in the workplace is through cake! My baking skills have come on considerably in the last four years. I’ve made everything from lemon drizzle, to fruitcake, flapjack, vegan banana bread, brownies, and of course everyone’s favourite – though I can’t understand why – rocky road!

In all seriousness though, the biggest thing I’ve learned is probably to have more self-confidence and belief in myself. Because, believe it or not, I actually do know what I’m talking about most of the time – provided it’s not dinosaurs, evolution, space or most of science in general, much to Rick’s constant dismay.


You know you have to stay for the next four years, right?

Haha, of course! 


4 more years, 4 more years!

by Mary Rose Roberts time to read: 7 min