In May this year, Beacon’s CEO Rick reached a rare milestone: ten years with a single organisation!
We grabbed him between meetings to find out how he reflects on the past decade working in the rare disease space.
What have been some of your highlights over the past 10 years?
A lot has happened to me and Beacon over the last decade, and different things stand out in different ways. One obvious highlight will always be our first ever ‘big’ showcase, held at Birmingham Women’s and Children’s Hospital.
Mary Rose and I travelled up to Birmingham together to run the event with the fabulous Dr. Larissa Kerecuk.
We had a great range of speakers and saw a large and diverse audience come through the doors to learn about and celebrate success in rare disease. It was one of the first times we saw the convening power of Beacon and the impact these types of meetings could have on the community.
Our first Cambridge Showcase after COVID also sticks in my memory, as it was quite overwhelming to see so many faces from the rare disease community together in a room once more, after many months of being locked in our homes!
As CEO, funding landmarks always carry significant meaning. These are times when huge amounts of hard work and worry pay off, securing funding stability and new opportunities for the charity.
Winning our first-ever National Lottery Community Fund bid was a huge achievement and really transformed the way we were able to work on our patient engagement work.
Similarly, securing a position within the REMEDi4ALL consortium transformed the work that I’ve been able to deliver personally, as well as the size and impact of Beacon – it opened our work to an international research audience in a way that has been far beyond my expectations.
Finally – I was very surprised and touched by the party that my team threw for me in May to celebrate my ten years with Beacon.
It was amazing to receive a book of messages from across the rare community, and it was something I’d never have expected.
How has the organisation grown over the years?
I was the third-ever employee at Beacon, and we have seen another twenty people come through the organisation since I started, peaking at 12 employees this year. The team has always been one of the big positives about the job.
We’ve generally been lucky to employ lots of bright and positive people who are eager to deliver impact to our community and develop their skills.
It has been a pleasure to see them grow, but also just to laugh with them in the office or through the challenges of event and project delivery.
Importantly, staff growth has only happened because we’ve been able to grow our projects, impact and support. Over the last decade, Beacon’s training has expanded and diversified (check out the Resources Hub if you don’t believe me), our Showcase series has grown, and we’ve managed to join more large international projects to create more opportunities for patient group leaders in research.
While we haven’t got everything right, I think we’ve tried to retain our connection to the tiny, volunteer-led ultra-rare patient groups that make up so much of our audience and help create more opportunities for you to succeed.
What change have you seen in the rare disease space over the last decade?
I think there has been a lot of movement in the rare disease space over the last decade:
- More patient involvement in research and product development
- More treatments reaching market for a wider range of patients
- More collaborative projects with a rare disease focus
But it is fair to say that change has happened nowhere near fast enough for people living with rare conditions. Austerity, COVID and BREXIT have all been serious blockers to rare disease progress in the UK at different times, and their disproportionate impact on the rare disease community hasn’t really been recognised by policymakers.
The recent significant investments in rare disease research initiatives in the country, the development of advanced therapy platforms, and the growing awareness of the need for patient input into research all give me hope for the future.
However, I still feel that the vital role that rare disease patient organisations play in supporting those living with rare diseases and instigating change in their care pathways is overlooked and undervalued by society. Most of these groups are doing huge amounts of vital work with little to no funding. They need structural and financial support to succeed. I hope we can see greater investment in, and recognition of, patient groups in the coming years.
Any closing thoughts for the Beacon community?
I’d just like to thank everyone for welcoming a random doctor of mole evolution into the rare disease world ten years ago.
It continues to be a privilege to support the rare disease patient community and find ways to deliver training and events that help you practically in your day-to-day work. The work that patient group leaders do is vital, and I’m so happy to support it in any small way.
I also want to thank all 22 people who I’ve worked with at Beacon over the years. It has been a continual privilege to be a part of this team and this community; something that’s all down to the people around me. I’m excited to see what the next few years bring!
