How we’re supporting Newly Diagnosed Duchenne families through the diagnosis and the impossible decisions they are forced to make.
The last year has seen huge transformations for us all. This time a year ago we were just emerging from the 3rd 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!
Specialist advice, and advocacy specific to the current difficulties we were experiencing. A shoulder to cry on, and the chance to build friendships; friendships that matter so much, when times are tough!
Duchenne Parent
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.
Thanks so much for talking about this! I am a manifesting carrier and this helped me understand it a bit more 🙂
Manifesting female carrier of Duchenne
Action Duchenne is brilliant at providing a wider perspective on Duchenne. The research is so important. But helping families understand the condition, providing a friendly and sympathetic ear, and helping them to access care and assistance is vital for so many on a day-to-day basis. This is where Action Duchenne stands out.
Duchenne Parent
Newly Diagnosed families’ events
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.
My 5yr grandson was diagnosed Sept 2 … we started watching the videos on Friday and got up at 1am Saturday and Sunday morning to attend. We attended your Newly Diagnosed Families weekend and this one. We are so grateful to Action Duchenne for making this available online and helping us start to learn what we need to know to support (him).
Duchenne Grandmother
A massive thank you – Action Duchenne have been there for us since our little one arrived and are our go to people for help outside medical professionals.
Adoptive Duchenne Parent
Everyone at Action Duchenne has been so approachable but not overpowering . They make so much effort to provide relevant information. I feel like I have someone to turn to if I need to and that is a big help.
Duchenne Parent
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience
Lizzie | Duchenne Mum | Member
Getting out and about
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.
My mission is to equip Duchenne families with the relevant, up-to-date information about Duchenne Muscular Dystrophy through a series of engaging scientific content. The aim is to empower families to challenge findings, ask questions, feel supported and have access to resources that will guide them through their journey with Duchenne.
Dr Mehreen Arif, Chief Scientific Officer
I will be meeting families in-person, face to face, to offer our much-needed support when you most need it. Sometimes, some things just need to be talked over with a shoulder to lean on and a cup of tea in hand.
Alex Berbank, Outreach Officer
Bringing science and support to life
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.
Through the pilot project phase in 2021 we have really seen how it can impact on the lives of individuals and also on their families. We have also seen from parents how difficult it is to go through newly diagnosed journeys, and it is my absolute commitment that we will continue building our support to focus on carefully delivering what is needed.
Florence Boulton, National Director
Looking to the future
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.
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 making this project possible.
