Scrutinising the science of Duchenne

Blog by Florence Boulton, National Director

Wow, what a day! After months of hard work, we finally pulled out all the stops today, kicking off the first of 24 science education workshops in the scholarly city of Cambridge. 

I had the pleasure of spending the morning at a very positive meeting with the team at Addenbrookes Hospital, explaining how our ‘All-through Support’ project is working at other centres. Then a short journey to The Signal Box, where I joined our Chief Scientific Officer, Dr Mehreen, and Alex, our Outreach Officer for the Science on Tour! 

Our aims for the workshops have always been very clear; to impart knowledge to Duchenne families enabling them to make informed decisions about their child or young person’s care. Mehreen achieved this in spades. I learned things about exons and the ‘why’ about Duchenne that I have not come across before in my 2.5 years at Action Duchenne. In fact, one of my colleagues recently told me, “I’ve been in the Duchenne community for nearly 7 years, and I’ve never experienced such a clear, yet detailed explanation and full understanding of Duchenne before”. 

Some of the science was extremely complicated, but Mehreen, with Alex’s help, was able to judge the room beautifully; stopping when necessary, and going back over key points. There was a lot to take in, but we know Duchenne families’ time is precious, so it was important for us to cover as much as we could during those few hours. 

The feeling of coming together, after all this time was palpable, especially for the Duchenne parents in the airy, bright and welcoming Signal Box centre. There is truly no other feeling like it for Duchenne families; being in a room with others who completely and utterly ‘get it’. 

Looking at the numbers of tickets which have already been booked for other venues across the country, I am so proud and excited to be bringing this feeling to so many other families this summer.  If you would like to come along, please take a look at the venue list in the link below. Every venue is fully accessible and everyone is welcome. The tickets are free for all, and we encourage you to invite the professionals around you to benefit from the workshops as there is something for everyone.