By David Taylor. In May 2018, our son Edward (who was 2 ½ at the time) was diagnosed with Duchenne Muscular Dystrophy. I have struggled with many …
Staying active during lockdown
By Daniel Miller Since I was small, I have always been fascinated by history and have enjoyed visiting museums, with lots of great museums and …
One point at a time, that’s the idea
By Bryan Purdue Hi everyone, hope you are all well and safe! I wanted to discuss what’s happening in the world from my point of view. …
Fundraisers adapt training during COVID-19
Jonathan and Mike are two keen cyclists who decided to take on a 360km tour round the regional offices of their company, Taylor Wimpey! Inspired …
Helping you through COVID-19
Support and resources for our Duchenne community A message from the National Director, Florence Boulton With the impact of COVID-19 on our …
#DAY18OFISOLATION
A blog by Duchenne Mum - Ashley 18 days ago I made the decision for my family to take everyone out of school/nursery, some may think I was a little …
Isolation for the nation
A blog by Duchenne Dad, Darren Well, CV19 is here, so what do we do about it, how will we fill our time, how do we alleviate the boredom of self …
Supporting families – Lynnette’s perspective
In April 2016, 6 months after my son was diagnosed with Duchenne muscular dystrophy, I joined the Action Duchenne team. I felt I had to do something …
Hundreds inspired by Duchenne Science on Tour project
We recognised that keeping up with research news can be challenging, with news stories and press releases using language that's much more …
Hundreds inspired by Duchenne Science on Tour projectRead More
My first month at Action Duchenne
When the National Director role at Action Duchenne came up last November and I started reading about all the work the charity does, it was inspiring …
Raising the profile of Duchenne with Primary School pupils on Rare Disease Day
Lizzie, Duchenne Mummy and one of Action Duchenne's volunteer Community Champions, was asked to go into her son’s school to give a talk about Duchenne …
Raising the profile of Duchenne with Primary School pupils on Rare Disease DayRead More
Advocacy at a Norfolk Primary school
Our Patient Advocate and Registry Curator, Angela Stringer attended a meeting this week in a Norfolk primary school to support a Duchenne …
