Greetings from the South, Reunions in the ‘North’, and The Power of Yet
Joining M4RD: A New Chapter as Strategic Operations Manager by Katie Sutton
I recently joined M4RD as the new Strategic Operations Manager, and it’s been an interesting journey so far! My first encounter with this inspiring charity was a few years back when I stumbled upon their website. I don’t recall what I was searching for, but I do remember a saying about “hearing hooves and thinking horses”—and the need to stay open to the possibility of a zebra! Because, let’s face it, in rare disease, it’s always good to keep an eye out for the unexpected!
Since meeting the team at a conference in July and starting in August, my journey has been full of zebra stripes—it’s been interesting, thought-provoking, and a real brain workout!
Why M4RD?
I’ve always been passionate about communication and the impact our words can have. That’s why M4RD’s approach to supporting those affected by rare conditions really resonates with me. They recognise that while there are over 7,000 rare diseases, together they’re actually pretty common—and many challenges patients experience overlap.
I love that M4RD doesn’t expect medics to master every single rare condition; instead, they encourage viewing them as collectively commonplace. When I met the team, I quickly picked up on the charity’s personality—and each member’s individual one too. Together, we’re not just aiming for our goals; we’re making sure our efforts resonate with the communities we serve. We also learned which Australian animals we resemble: our team includes 2 eagles, 2 dolphins, 2 kangaroos, and a wombat. Clearly, we’ve got the wildlife scene covered!
As a rare disease patient myself, I can definitely relate to the “diagnostic odyssey” that M4RD talks about. My journey started with childhood symptoms, an array of specialists, and culminated in a diagnosis of Behçet’s at 35—mostly thanks to my inability to wear contact lenses!
Dry eyes sent me to an ophthalmologist with a hunch. This led to a Behçet’s specialist who treated me and a medical student to a history lesson during my first appointment (awkward glances during “What happened in 1588?”!). I left feeling both informed and understood – I hated history class at school, but giving the subject some context really helped!
Although my diagnosis took its sweet time, things sped up after that. My rheumatologist found me interesting and dubbed me a “marathon runner,” even though I was still in training (it took me four years to cross that finish line, and let’s just say it wasn’t all running!).
Heading North to Cambridge Rare Disease Showcase
This month offered a second chance to connect with the rare disease community at Beacon’s Rare Disease Showcase in Cambridge.
A lovely direct train brought me from Brighton to Cambridge, where I reunited with colleagues Helen and Lucy, and met a few other people I had only met online (people’s actual height still frequently surprises me!). We spent the evening listening to talks and talking to listeners. We even had the opportunity to snap a selfie with Jeffery SirMoo!
After 3 hours of connection, I hopped back on my connection home, with eyes opened even further to the vast world of rare disease, and hope for what’s to come. A week later, our team dove into the Power of Yet.
The Power of Yet
Since joining M4RD I’ve been struck by our team’s learning approach. We’re encouraged to ask for help and recognise that we’re all continuously learning. Last week’s introduction to The Power of Yet was transformative. I’ve heard of a growth mindset before, but I’ve come to realise that it thrives only in an environment that actively values it – M4RD do.
Looking Ahead
As I settle into my role, I’m filled with optimism about what we can achieve together. M4RD has a clear vision, and I’m eager to contribute to our collective success.
I look forward to sharing more updates as we progress, and I invite you to join us on this journey – we’re on all the socials (something else for me to apply my growth mindset to)!
