Action Duchenne

The last year has seen huge transformations for us all. This time a year ago we were just emerging from the 3^rd national lockdown still very unsure of what the future would look like, and with the NHS still very much occupied with managing the pandemic. Some would argue not much has changed in the past years, but we, here at Action Duchenne would like to think it has! We have made 1,169 support calls throughout the last year, providing our much-needed support to families across the United Kingdom, helping them process the issues and struggles that coming out of the pandemic has thrown our way. In addition to this we brought the science behind Duchenne to the families via a virtual video series explaining the What, Why and How behind Duchenne to over 1,000 viewers.

Through our events for Newly Diagnosed families, we supported 59 new families across the globe, from Canada, India, Poland and Australia, to Basingstoke and Basildon. The Newly Diagnosed Conference reached roughly 1 in 3 of all newly diagnosed families in the UK. We still encourage our support and recordings to be shared with new Duchenne families and with anyone who is keen to learn more about this rare condition.

We are going to be doing more work with families immediately after diagnosis, including more in-person visits and organised group sessions! Our new Outreach Officer, Alex Berbank and Chief Science Officer, Dr Mehreen Arif will be travelling the width and breadth of the UK, offering face-to-face support to families immediately after diagnosis,running small group sessions to introduce newly diagnosed families to the community, providing unbiased, factual information to empower families to make vital decisions, and helping families identify relevant information about their childrens’ condition.

Building on the success of our National Lottery-funded ‘COVID-19 will eventually pass, but Duchenne will remain’ project in 2020; we have now completed our pilot project ‘Supporting families immediately after diagnosis and impossible decisions’. We would like to thank Garfield Weston Foundation, HM Government (in partnership with the National Lottery Community Fund), Pfizer, PTC Therapeutics, Roche and Sarepta Therapeutics for supporting the first year of this project.

There are approximately 150 cases of Duchenne diagnosed in the UK each year, and the majority of cases are diagnosed in a small number of specialised centres. We are taking the next step forward to deliver the two of the five synergistic components set out in our ‘All-through Support’ project: ‘Supporting parents through diagnosis’ and ‘Helping families make informed decisions’ project.

In the coming months/years, we continue to be embedded in the Duchenne community and through our conversations with hundreds of families, we see how difficult the journey is. We know the importance of the support we offer to Duchenne families, at a time where they can feel at their lowest and most alone. The truth is everyone we work with has the strength, determination and care that they need to get through some of life’s biggest challenges they face, and we just help them access that from inside themselves.

We are excited to keep the Duchenne community updated with our progress and look forward to sharing more with you as the projects unfold.