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Another work anniversary is upon us. This week marks Laura’s second year of working for Findacure, too!

In this blog, Laura looks back on her time at Findacure and ahead at what is to come!

Can you sum up your time at Findacure for us?

My two years at Findacure have been eye-opening. When I entered this role I knew I had been drawn to it. Only a few years before, I supported my best friends navigate the devastating journey of losing their magical little girl to her rare condition. Being present throughout her treatment and the loss that followed was one of the hardest things I have witnessed. When I learned about Findacure, I was inspired by the idea that I could be a part of helping others and raising awareness of rare diseases and the impact they have on patients, parents and families.

Upon attending one of my first face-to-face workshops, our Leadership Workshop (the last one we held in person!), I was in awe of the drive, passion and dedication of the attendees. I met with patient group leaders who were all making change, raising awareness of their individual conditions and most of all supporting each other to do so! The strength of the rare community shined through and highlighted the power that people hold by working together.

In March, only a month later – the pandemic hit and I continued to see the resilience of patient group organisations as we moved all of our work online. Our RareChats, online workshops and empowerment work as a whole have continued to expand!

Over the last two years, our reach to patient groups and partners in the rare disease field has continued to increase throughout the UK and beyond. The best part has been watching our charity evolve and being a part of the change. I love my job and am really excited about the future of Findacure!

What’s something new you learned this year?

Resilience is something big that I have learnt this year! Both personally and professionally, I have seen how difficult times can adapt the way we live, sometimes changing things for the better! Personally, the way I was living before the pandemic was not healthy for my family. Remote working has allowed me to evaluate the best ways to be a working mum. Working mostly from home means I am able to drop my son off at the school gates and take him to the park when I pick him up. The previous commute-based lifestyle would have meant on some days I would have missed his little face light up in these moments – so for that I am thankful!

Professionally, it’s a hard one! We all miss the face-to-face contact that was so carefree before, but we have seen a clear increase in access to our service. The Findacure community has grown so much and there have been clear benefits to the online delivery of our work. I have spoken with patient group leaders who have been able to attend our events for the first time due to the new online format fitting better around their caring responsibilities. We have had contact with groups from South Africa to the Middle East. It’s like the world has shrunk in so many ways and brought us closer in so many others. Who knows what’s to come – but one thing I have learnt is that resilience will help us adapt through it!

What are your plans for year three?

I am looking forward to the year ahead. Findacure has some really exciting ways it is developing as an organisation. The International Rare Disease Showcase is going to be a significant event for us and bringing the global rare disease community together will be incredible. The potential for this event to influence rare disease patient advocacy in the UK and beyond is huge – I feel privileged to be a part of it!

Overall, as we grow as a charity, my plan is to continue to raise our income through grant funding, corporate partnerships and much more! This will allow us to keep developing new ideas and deliver our core work and community building events.

What is a highlight from your second year at Findacure?

A highlight from my second year at Findacure was watching our team grow in size and spirit. When I joined Findacure, there were only four of us!

During the pandemic we increased our delivery to best support our patient groups, this meant that the team had to expand too! We are now a team of seven and looking to increase that further in 2022. There is something quite wonderful about our ever growing team, we not only work well together but all support each other too. The work we do is so important and we couldn’t do without each other. The personalities and skills we have brought on our team are how we make the impact we do. Our team is great and I am so lucky to work with each and every one of them!

 

Laura’s two years at Findacure have flown by!

by Laura Thompson-Harper time to read: 5 min
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