This week’s blog is written by three of the oldest team members at our rare disease charity in Cambridge, UK!
Our CEO Dr Rick Thompson, Chief Operating Officer Mary Rose Roberts and Senior Projects Officer Philippa Norman share their favourite moment from the last decade. Without further ado, Rick goes down memory lane first to share what the past 10 years have meant to him as our CEO!
This week Beacon: for rare diseases celebrated its tenth anniversary. It is a huge milestone for the organisation, and also, a little bit hard to believe! I’ve now been part of the charity for seven and a half years, and the time has flown by. Since starting with Findacure, I’ve gone from Scientific Officer to CEO, worked with 15 different teammates, and met hundreds of patient group leaders. Throughout that whole journey, I’ve always enjoyed the interactions with the rare disease community the most. Getting to share their experiences, listen to their challenges, and hopefully find ways to help them grow and develop their organisations is a pleasure that never gets old.
It is fair to say that Beacon has changed a lot in the last decade, not least with our recent rebrand. We’ve seen our patient group empowerment programme grow from quarterly half-day workshops, to a programme of webinars, e-learning training, face-to-face workshops, masterclasses and mentoring. We have provided training on issues as diverse as social media management, patient registries, and ethnicity and diversity in the rare disease community. We have grown our networking series from an annual life science meeting in a Cambridge bar, to an international virtual showcase welcoming over 450 attendees. Throughout all of this growth, change, and development, we have tried to retain our core ethos – to deliver open and friendly events which put patient groups at the heart of the rare community.
We are really proud of impact and achievements as a group. In the last year of the empowerment programme alone, we had 866 empowerment event attendances, we engaged with 238 different patient groups (at least 54 of which were completely new to us), and found that 84% of survey respondents agreed that our trainings improved their knowledge and skills.
We hope to keep growing our impact over the next decade, but, in the meantime, we plan to find as many opportunities to celebrate our ten-year anniversary as we can!
You can visit our 10th Birthday Celebration page to see a timeline of our highlights, and watch it evolve over the year. If you want to get involved now why not share your favourite Beacon or Findacure moment on social media using the hashtag #BeaconsBirthdayBash?
Here are some of ours to get you started…
Our CEO Dr Rick Thompson’s 10th birthday highlight
The International Rare Disease Showcase at the start of 2022 will always stand out in my mind. This event was the culmination of a huge amount of work behind the scenes, both to completely rebrand and re-message our organisation, but also to deliver a truly international programme. To see that three-day event come together, with exceptional engagement, and amazing discussions like our panel on rare disease patient advocacy in Africa, was a really fantastic feeling.
Our Chief Operating Officer Mary Rose Roberts’ 10th birthday highlight
I’ve had a lot of great moments during my six and a half years at Beacon/Findacure; far too many for me to pick just one favourite! Instead, I want to highlight the one which had the greatest impact on me and my career here – The Midlands Rare Disease Showcase in Birmingham, 2016.
The Midlands Showcase was the first official entry in our yet-to-be-established Rare Disease Showcase Series, and the also first major event I worked on as a fresh-faced Events Officer. For it, we teamed up with the rare disease team at Birmingham Children’s Hospital – led by the wonderful Dr Larissa Kerecuk – to host a day-long conference focused on rare disease innovations and progress in the Midlands and wider country.
It was such a fun event and a brilliant opportunity for me to learn more about the community and meet patient groups, academics, clinicians and industry reps from across the field. It also taught me a lot about the dos and don’ts of events management and I’ve carried the lessons I learned from that first showcase forward in all the projects I managed and overseen since.
Our Senior Projects Officer Philippa Norman’s 10th birthday highlight
It’s really hard to pick a specific favourite moment working at Beacon as I can honestly say I have never dreaded a Monday morning in the last three years. However, that being said, there have been some really stand out moments.
Winning Jeffrey the cow through the Cows about Cambridge competition at the Cambridge independent was a moment that was equal parts great and silly. It was nice to win the team a cute mascot and he never fails to make us all smile or start up new conversations.
It was really rewarding to me to help the charity grow and adapt our virtual offer during the Covid-19 pandemic and although I’m glad we are slowly returning to normality, I look back at those team zoom drinks with fondness as we all chipped in to keep each other going through tough times.
Don’t forget to tell us your favourite Findacure or Beacon moment on social media!
Share your memory using the hashtag #BeaconsBirthdayBash
Need some inspiration? View our 10th Birthday celebration page to view a complete timeline from 2012 to 2022!
Go down memory lane with us to celebrate our achievements and the team who helped us reach a decade of ensuring that no one faces their rare journey alone.