Dear friends and supporters, 

It’s with a sense of disbelief that we are writing to you all today in a situation none of us probably ever imagined we would live through. 

Last week our families, along with many others in our Duchenne community, received a letter from the NHS confirming what we already knew: that our sons, Eli and Jack, who both have Duchenne Muscular Dystrophy, are in the vulnerable group and need to be shielded from society for 3 months. We’d already been self-isolating for a week, but we’re now settling in for another 12 weeks. 

We are not alone of course and our hearts go out to other families with DMD and all of you living through these anxious times. There has been much uncertainty in recent weeks and our incredible team, lean yet unbelievably dedicated, have stepped up, working from their homes, to support the community. We are working with other charities, medical groups and clinicians to understand and communicate the impact of coronavirus on the DMD community, and have started weekly webinars to support the DMD community, to try to provide answers and clarity in these frightening times. 

We want to reassure you that while this virus will sadly have a huge impact on the pace of medical research, we are by no means standing still. We’ve been in contact with all of our researchers, to see how their teams are coping with this crisis, what it will mean for their projects, and how we can best support them. As anticipated, almost all are impacted - recruitment for clinical trials is on hold, key clinical staff are being reassigned, and laboratory staff are told to stay at home. However, we want to reassure you that these projects will come to fruition - it may take longer than planned, but they are as committed as we are to finding better treatments for DMD. Our search continues, and as we speak, our Scientific Advisory Board are reviewing two new research projects that we hope to share with you in the coming months. 

As ever, we are incredibly grateful for your continued support and dedication to our mission. If you have any questions, or would like to speak to a member of the team, please do not hesitate to contact us.  

And we want to end with a thank you: When we see the deserted streets outside our houses, when we open the windows and hear no cars, aeroplanes or the usual loud hum of cities at work, but instead birdsong, we feel not emptiness and panic, but solidarity. Because whilst the word ‘isolating’ can speak for itself, there is a strong sense that we, as a society, are pulling together – and staying indoors - to get us through this crisis. 

Our thoughts are with you and your families at this incredibly difficult time. 

Very best wishes,

Emily, Alex and the Duchenne UK team

Charity Number 1147094 
www.duchenneuk.org