Three Beaconites, Megan, Hannah and Blayne have celebrated big work anniversaries at Beacon!
We asked them to summarise what this anniversary means to them and reflect back on their time at the charity.
Megan: 1 year anniversary
In January, I celebrated my first year at Beacon – and what a year it has been!
When I started at Beacon, I knew the role would look a little different from before, given that I came from a lab setting.
However, I didn’t quite expect to be given the opportunity to get involved in so many projects, and the freedom to really drive them.
From helping organise the REMEDi4ALL Academic Bootcamp, to chairing sessions at #iDR25, delivering a webinar series for the LifeArc TrC4RD Hub, and giving talks at countless webinars and external events, it’s safe to say the year has been equal parts challenging and rewarding.
For me, the highlight has been attending so many events and meeting so many amazing people.
I’ve attended Beacon-led events, like the Manchester Rare Disease Showcase; REMEDi4ALL events, such as the Hackathon; and LifeArc events, including the TrC4RD Annual Showcase.
This is the best part of the role – meeting patient groups, connecting with academics driven to make an impact, and spending time with our collaborators.
I’m really excited to see what the next year brings and to continue working with the best (Beacon) bunch!
Hannah: 5 year anniversary
When I started at Beacon in 2021, I was completely new to the rare disease community.
It was mid-pandemic, I’d just moved back from living in Canada, and I was about to begin my very first role in the charity sector.
I remember feeling excited (and nervous!) about what lay ahead.
I can’t believe that was 5 years ago.
In that time, Beacon has grown and evolved in so many ways.
We’ve rebranded, doubled in size as a team, begun delivering international conferences, and became part of national and international projects in research and drug repurposing.
It’s been amazing to be part of that journey and to see the impact of our work expand year on year.
My own role has grown alongside the organisation.
I now lead on our patient group training programme, delivering workshops, masterclasses and webinars for patient groups across the community.
I’m excited to be running our Patient Group Mentoring Programme for the third time, and I’ve also led two successful Student Voice Prize Competitions, as well as taking responsibility for our Patient Group Engagement Committee.
Supporting patient groups to build their confidence, skills and networks has become one of the most rewarding parts of my role.
I’ve also had the opportunity to represent the charity externally.
Last autumn, I was proud to be part of a panel at World Orphan Drug Congress, discussing patient-centric innovation and collaboration, a topic that, with my history degree background, I never imagined I’d be contributing to before joining Beacon!
What hasn’t changed over the years is our community.
I continue to be blown away by the motivation, resilience and determination of people affected by rare disease and by the ability for patient groups to drive change in the face of significant challenges.
It’s been a privilege to work with and for such an important cause, and I’m excited to see what the next chapter brings.
Blayne: 5 year anniversary
How has it already been five years since I started at Beacon?
When I pause to reflect on where I began and where I am today, I can’t help but smile.
I joined the charity in 2020 as its Marketing and Engagement Manager responsible for our social media, newsletters, and external communications when we were still known as Findacure.
In 2022, I helped lead our rebrand to Beacon, writing the new website copy and supporting the organisation’s transition into its next chapter.
I then moved into The Resources Hub as Digital Resources Manager, coordinating our volunteers and pro bono supporters who have helped us achieve our mission of ensuring that no one faces their rare journey alone.
Today, I remain closely involved in The Resources Hub and communications, while also expanding my role to include writing fundraising applications.
What has truly shaped my journey at Beacon, though, is the people.
I’ve had the privilege of working alongside and learning from passionate, driven and empowering individuals from every corner of the rare disease community.
I cherish the conversations and stories we’ve shared and the lasting relationships we’ve built. I will always proudly cheer my connections on wherever their paths may lead.
It would be hard-pressed to find a more welcoming and resilient community than the rare disease sector.
I feel incredibly fortunate to work with and support so many determined organisations and exceptional leaders.
These five years at Beacon have brought personal growth, professional milestones, and, most importantly, the deep reward of knowing that I’ve played a small part in making a difference in the lives of others around the world.
If you told me back in 2020 that I’d walk the halls of Westminster, write for The Guardian, Pharmafile, the British Journal of Cardiac Nursing or Rare Revolution Magazine, I would have never believed you!
Thank you to the Beaconites for encouraging me to explore my passions and reach new heights. Your endless belief in me and support mean the absolute world.
Bring on the next chapter!
