We recognised that keeping up with research news can be challenging, with news stories and press releases using language that’s much more complicated than it needs to be!
To help our families understand the research and clinical trials process we launched the Duchenne Science on Tour series.
18 venues across the UK
Our Head of Research Neil, along with a member of the support team welcomed hundreds of Duchenne families, friends, clinicians, TAs and teachers to 18 different venues across the UK.
Easy to understand
These intimate, interactive sessions have been a resounding success, using real science demonstrations and experiments to demonstrate the challenges facing researchers in Duchenne muscular dystrophy and how researchers can overcome those challenges.
Thinking differently
100% of attendees reported that attending the sessions has increased their knowledge and understanding of Duchenne research and clinical trials, with meeting other families and taking part in the hands on science experiments being highlights.
Our objectives at the core of what we do
One of our 3 core objectives is building a community. In bringing together families who live locally to each other we’ve facilitated the continual support that is so vitally important when living with Duchenne muscular dystrophy.
Thank you all for making the sessions so incredibly powerful.
We are busy planning our second series of Duchenne Science on Tour and look forward to sharing more information with the community soon.
Just a taster of the feedback we received
Neil is so knowledgeable & has the skills to explain really complicated information in an easily digestible way.
Duchenne Mum
Sam and Neil were both lovely and just “normal” it was very refreshing to meet such great people.
Duchenne Mum
We sat and listened to people’s questions and Neil answered them all with so much detail and honesty it was great.
Duchenne Mum
Neil sat down with us and explained what our son’s mutation was as on the genetic report it was just letters and numbers. He went through everything in a way that really helped us understand.
Duchenne Parent
Neil made me think differently about all aspects of Duchenne, from critically examining the media, to gathering all the information before we make a decision. I felt really supported and listened to, thank you so much.
Duchenne Mum
It was a thought provoking session. Fascinating to find this method to extract DNA and to see differences from different samples.
Specialist Teacher
My first month at Action Duchenne
