Six month reflection

After four months of planning, refining, and soul-searching, I can hardly believe that Inflammatory Arthritis UK is now six months old. One of the questions I have been asked most is: “Why start a new charity when others already exist? It is a fair question and one I asked myself many times.

For years, I’d been thinking about creating a charity focused solely on inflammatory arthritis (IA). But I knew from the beginning: I didn’t want to duplicate what others were already doing. There are incredible organisations out there, Versus Arthritis, Arthritis Action, and more. I didn’t want to reinvent the wheel. But there was a gap. No charity was entirely focused on inflammatory arthritis. More importantly, none were sharing the daily realities of living with IA from people who actually live with it. That’s where IAUK come in.

Starting With Purpose

On reflection, my first tip would be this: do your market research.
I needed to fully understand the landscape, identify what was missing, and ask myself some tough questions:

• What’s truly needed?
• Where are the gaps?
• And most critically: do I have the mindset, stamina, and passion to do this?

Because here’s the truth, starting a charity is unpaid, relentless, and all-consuming. But living with IA has taught me resilience, empathy, and being grounded. Add to that my passion (and a healthy dose of stubbornness!), and I knew I had what it would take.

In the back of my mind, I always returned to a childhood conversation with my dad. I was living with what was then called “children’s chronic arthritis” (now known as Juvenile Idiopathic Arthritis), and I told him:
“One day, I want to help others like me. Not sure how, but I will.”

Once the ‘why’ was clear, the next step was to build a business plan:
What are we doing? Why are we doing it? How will we get there?

The Power of Partnership

It was while on holiday last year that Katy and I got talking about starting something new. We connected instantly, two people living with IA, with a shared vision rooted in realism, positivity, and purpose. We both knew: IA is more than just flares and joint pain. It’s unpredictable, exhausting, emotionally draining, and widely misunderstood.

So, we built something new:
A charity that exists solely to support and represent the IA community.

Why we are different

• Led by Lived Experience
  We’re not just advocates – we live with IA. We understand the fear, fatigue, flares, cancellations, and invisible battles.
• 100% IA Focus
  Everything we do is built around IA – RA, JIA, PsA, axSpA, and others. No dilution, no distractions – just focused, relevant support.
• Real Voices, Real Stories
  Every week (with the occasional holiday break!), we feature real stories from real people.
  You hear from people who truly get it, not through medical booklets, but through lived experience, honesty, and connection. That’s where real understanding begins.
• Support for All Ages & Stages
  From children and teens to adults newly diagnosed or decades into their journey, we’re here for every stage of life with IA.
• Honest Positivity
  We don’t sugarcoat anything. Life with IA is tough. But we believe in living well, in finding hope, and in sharing tools that uplift and empower.

Our Strategic Focus – AREA

Yes, I love an acronym!

Our work is built around four key pillars:

• Advocacy
• Research
• Education
• Awareness

Together, they form our AREA of impact and our commitment to driving change across the IA community.

What we have learned

Running a charity is like building a plane while flying it and I’ve loved (almost) every second of it.

Over the past 6 months, I’ve gained skills I never imagined I’d need:

✅ Website design
✅ Social media content strategy
✅ Grant writing
✅ Fundraising
✅ Governance (hello, Chair of Trustees!)
✅ Podcast production
✅ Charity finance and accounting
…and about 100 other things no one tells you when starting a non-profit from scratch.

Top Tip: Ask for help.
No one can do everything, and you’re not supposed to. As Shakespeare said “A jack of all trades is a master of none”. I have met so many brilliant people I never would have otherwise. I’m grateful to each of them for believing in what IAUK is trying to achieve and helping us grow.

The Big Decision: Our Podcast

Katy and I debated long and hard about whether to do a podcast. We could’ve kept it simple, just recorded on our phones and posted something quick. But we knew this was our chance to show who we are, what we stand for, and how different everyone’s IA journey can be.

We also knew we needed help to get it right.

I’d previously worked with a talented producer and stayed in touch. After a meeting with him and Katy, we knew we had found our person. Yes, it would cost money, but poor quality would mean no listeners and lost impact. Like live with IA everything is a balancing act.

So just two days after launching the charity, we launched our podcast:
Inflammatory!
24 episodes. Over 3,600 listens.
Topics ranging from mental health to sex and relationships, parenting, workplace life, and more.

Even during our summer break, people are still discovering, listening, and re-listening to our episodes, which tells us we’re doing something right.

The Impact

I always go back to that conversation with my dad. And now, hearing from people who say IAUK has helped them feel seen, heard, and understood is overwhelming in the very best way.

Our social media following continues to grow. Website traffic is up. Our community is developing, and they’re sticking around.

We’ve found our niche. And more importantly, we have created a new community.

Looking Ahead

The next six months? 2026? Beyond?

Well, first…I’m off on a well-earned holiday.

I’m not great at taking time for myself or acknowledging what I’ve achieved but I’m learning. And today, I’m honestly feeling proud.

We have big plans for the future, and I can’t wait to share them.
But for now…
Out of office: ON.

To everyone who’s followed, supported, donated, listened, or simply believed in what we’re doing a massive thank you.
This is just the beginning.