Guest Blog: Duchenne Parents Karen and Jamie Thompson share their experience of attending the Action Duchenne Annual International Conference
Written by Karen and Jamie Thompson
The Journey So Far
We’re a family of five, with three brilliant boys: Sam (11), Conor (10), and Dean (8). Conor and Dean are both living with Duchenne Muscular Dystrophy, and were diagnosed in 2020 at just 3 and 4 years old. It was a devastating time, made even more isolating when COVID hit soon after. Suddenly, we were navigating a life-changing diagnosis during a global lockdown, and we felt very alone.
We felt completely lost at the start, searching everywhere for help and it was Action Duchenne who reached back and helped us start to make sense of everything. They gave us a lifeline when we really needed it. They didn’t just give us information, they gave us understanding, support, and hope.
These days, Conor and Dean are still walking short distances, but they’ve got really cool Trekinetic powerchairs that they zoom around in the rest of the time. The boys are sociable, full of life, and absolutely hilarious. They love swimming, Lego, and like most kids, they are a bit too fond of their screens/gaming! They inspire us every single day though with their resilience and joy. We’ve had to make some big changes like moving house; we were lucky to find a bungalow close enough that they could stay in their school. Now we’re in the middle of planning to make our home fully adapted, which is both exciting and a bit daunting!
But we’re figuring it out, one step at a time.
The Action Duchenne Conference
We come to the conferences to learn, connect, and continue moving forward. The very first conference we attended was online during lockdown, and even then, it gave us so much clarity, comfort and strength. Each year since, we’ve found new reasons to attend and every year we get something new out of it.
In 2024, our focus was on housing and adaptations, as we were beginning to make plans for adapting and future proofing our new home. The conference was the ideal place to get practical advice, learn about equipment, and hear from other families who’d been through the process.
Beyond the sessions, the Action Duchenne conference is just the best place for meeting new families and sharing experiences. Everyone there just gets it – it’s a space where you don’t have to explain everything and that shared understanding is incredibly powerful – you will laugh, cry and learn together.
Our Takeaways
Honestly, we came away with so much. We connected with loads of other families who were incredibly generous, they offered to look over our house plans, shared what worked (and didn’t work!) in their own homes, and gave us really practical, honest advice.
Those conversations are gold – the kind of stuff you don’t find in a leaflet or a textbook. And it lit that fire in our belly again, that sense of: “Right, we’ve got this. Let’s keep going!”
We also got loads of up-to-date information on trials, treatments, equipment, education, and all the options available. We came back buzzing with ideas and more confidence to keep advocating for what our boys need. But more than anything, we left feeling empowered – to keep pushing, keep asking questions, and keep advocating.
Our Highlight
Honestly, it’s the people. Meeting other families, sharing experiences, laughing, crying, learning together, that’s the heart of the conference. There’s something incredibly comforting about being surrounded by people who understand without needing words. A simple nod, a knowing smile, an encouraging “you’ve got this” – those moments mean everything.
We always leave the conference feeling a bit lighter, a bit more hopeful. Also, it was really inspiring meeting older boys living full, happy lives. That helped shift our mindset too – it’s not about what you can’t do, it’s about finding new ways to do things. That’s our motto now.
To Any Newly Diagnosed Family….
Go. Just go. It might feel scary or overwhelming – we know, we’ve been there – but this conference is like a lifeline and this is the one place where you’ll feel truly understood. You don’t have to do everything. You don’t even have to attend every session. You can take it slow, or dive right in. Even just being around others who are walking the same path can be incredibly healing. You can go at your own pace. Sometimes just sitting and chatting with another parent who’s a bit further along in the journey can be more valuable than any talk.
You’ll learn so much – about the science, about the support, about everyday stuff like housing, school, equipment. You’ll get practical information, emotional support, and the chance to ask questions to experts and families alike. You’ll laugh, you might cry, but you’ll leave stronger.
We haven’t brought our boys with us yet (maybe selfishly as we enjoy the break!), but the kids’ hangout area always looks amazing. Maybe this year!
Action Duchenne gave us the tools to understand this diagnosis and the confidence to face the future. We’d recommend the conference to any family – whether you’re just starting out or have been on the journey a while. You’ll laugh, cry, connect, and leave stronger. We always do.
Tickets and Registration
Thanks to the support of our sponsors we can offer FREE tickets to Duchenne families as well as every young person and adults living with Duchenne. In recognition that many families in the Duchenne community are facing increased cost of living challenges and with the generosity of our Sponsors for the event, we can offer a grant of up to £100 towards your conference travel and/or accommodation to help towards the cost of attending the International Conference. This is one grant per family, and can be claimed after the conference.
Your ticket includes entry to the conference, lunch and refreshments throughout the two days.
Could you help others by sharing your story?
The most powerful stories come from within our community. We would love to feature guest blogs which share your experiences of your Duchenne journey. Email lizzie@actionduchenne.org to find out more.
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