The strength of our community
As we move towards the last few months of the year, I am so proud of the hard work that is coming to fruition. When we began our ‘All-through Support’ project, backed by the National Lottery, in 2021, our aim was to listen to our community to identify their unmet needs, and for our work to be led by what we heard.
In the last few weeks I have been honoured to be a part of two events which truly reflect the aims of our charity and demonstrate the strength of our community. At the end of August I travelled to the Calvert Trust in Exmoor to join with young people living with Duchenne as part of our ‘Yes I Can’ transition to adulthood project. This was the third residential trip of the Summer and it was wonderful to be a part of it. I was delighted that Benjamin James, who also lives with Duchenne, joined us as a mentor for the first time and his empathy was an integral part of the weekend. He’s written a blog about his experience here
The young people took part in a variety of adventurous activities, challenging themselves and pushing themselves out of their comfort zones alongside others who really understand. I was inspired by witnessing their achievements, joining their fun and seeing the confidence they gained. I came away from this weekend more convinced than ever of the potential our young people have and more determined that our work must continue to support them to achieve it.
I am really pleased that we have been able to begin our third programme of ‘Yes I Can’ with online sessions delivered by a variety of expert speakers. A big thank you for all the hard work to Ravi and his team for organising the programme. On the 27th of September Benjamin James reflected on his experiences of trying new things and accessing opportunities in our first session and he encouraged others to share their own experiences and to ask questions. Our second session of this programme will be on Wednesday 11th October at 6pm via Zoom.
The ongoing success of ‘Yes I Can’ has given me high hopes for the start of our new transition project for the younger age group, those aged 8 – 14, who are living with Duchenne. We know that there is a lot of unmet need for the young people and their families during this time of transition from primary to secondary school, and often also a time when mobility needs change. Our first online session will take place on Wednesday 18th October at 6pm via Zoom.
Vitality London
September brought another opportunity to be alongside our community. I have always been inspired by the many people who choose to take on events to fundraise for us, and the Vitality London 10000 was my chance to join them! A team of 20 runners took part for Action Duchenne, and not only was this my first running event but it was also the furthest I had ever run before. It was amazing to be joined not only by those who were running the event, but their friends and family, as well as Action Duchenne staff and their families. The real feeling of achievement from completing the run was amplified by the wonderful community and support at our post-event picnic. For everyone running, it gave a tangible meaning to our efforts to raise funds and awareness. Read our latest fundraising newsletter for a full update on all the amazing things people are doing to support our work.
Education and support come together
The 26th of September was our last Science on Tour workshop of 2023 after a programme of 30 workshops covering 95% of the postcodes of those we support. Our science education team, alongside our support team, worked incredibly hard to provide a combination of easily accessible information and individual support in the small group sessions. This made the workshops useful for everyone, from those with a recent diagnosis to those entering a new phase of their Duchenne journey and from clinicians to school support staff. Knowledge really is power.
While our workshops have finished for this year, I am very pleased that we are able to continue to offer this full spectrum of support. Our third annual online event for Newly Diagnosed Families is planned for Saturday the 21st October from 2pm-5pm via Zoom. If you’ve missed out on the chance to come along to an in-person Science on Tour workshop, this is the perfect opportunity to top up your Duchenne knowledge. It will also allow those with a recent diagnosis to get the information they need as well as meeting our support team and others in a similar situation. It’s not just for parents and carers; it will be beneficial for anyone impacted by a Duchenne diagnosis; grandparents, family members and care teams.
We know that receiving a diagnosis of Duchenne is life changing and overwhelming. It can be hard to know where to turn to get accurate information and much needed support at such a challenging time. Action Duchenne will be here for you all the way through your journey.
This event is carefully timed to be just 3 weeks before our in-person Annual International Conference. Our 2 day in-person conference can seem a little daunting, especially after a recent diagnosis. We are confident that joining our special online event will mean you can make new connections and friends and feel that you’ve understood ‘the basics’. Then coming along to the conference will mean you can meet those friends in person and build on your foundation of both support and Duchenne knowledge.
My team is working hard to finalise the details of the conference and there isn’t long to go now! This year’s conference has 3 content streams covering every aspect of living with Duchenne from research updates, housing adaptations and the impact on learning and behaviour. I am so pleased that this year that we have many families coming together, with more children in our professionally run creche and more young people in our Hang Out area. It is truly reflective of the community that I am proud to be a part of.
WMS event and our ongoing collaboration work with MD UK and Duchenne UK
The World Muscle Society is set to convene in Charleston, USA, from October 3rd to 7th, 2023. This global gathering holds immense significance for the muscular dystrophy community and aligns perfectly with our commitment to collaboration and advocacy at Action Duchenne.
Action Duchenne is proud to highlight our ongoing collaboration with MDUK and Duchenne UK (DUK) in our latest blog. Together, we are actively engaged in supporting NICE’s appraisal of vamorolone, a potential game-changer in the fight against Duchenne muscular dystrophy. We are taking part in discussions during clinician and patient/family-focused webinars to share the latest insights and outcomes from the EMBARK study. This study will be a significant milestone for the Duchenne community in the UK that will provide valuable data and important insights of the effectiveness of gene therapy. These endeavors reflect our dedication to ensuring that the Duchenne community remains informed, empowered, and united on the path to the better quality of life.
In addition to our work on vamorolone, we are steadfastly committed to supporting emerging clinical trials and therapies, including DYNE-251, DYNE-101, and SPR-9001. Our commitment to advancing Duchenne research and advocacy goes hand in hand with our mission to improve the lives of those affected by Duchenne muscular dystrophy.
Science Live
As well as these events, our science communication team has worked very hard to put together a series of short videos explaining different things about Duchenne. The aim was to deliver easily accessible information broken down into bite-sized pieces, which explain the science behind Duchenne to those who need it. They have also been designed so that they are easy to share with family, friends, school staff and care teams. Our first videos are ready to go and they’ll be released over the coming weeks in the lead up to our conference. I am incredibly proud of the hard work that has gone into these and I know they will be an invaluable resource for many families.
Finally, we have been working to further develop the level of support we offer and this month we have started our first two online group counselling programmes for parents and carers. Many parents we support have struggled to find appropriate help for their mental health and well-being, and this counselling programme gives them the opportunity to express feelings in a safe space with others who are in a similar situation along with the support of a trained counselling professional. If you’d like to find out more about our upcoming group counselling sessions, please get in touch with Kelly, our Support Officer: kelly@actionduchenne.org.
Our other online support groups are ongoing, with our regular HIVE events and our monthly Dad’s Night which is going from strength to strength. I am also pleased that we are starting to grow our pool of contributors who write for us from their lived experience.
I hope to see you soon
It is such a busy and exciting time for our charity and as with everything in life, it is easy to get caught up in the demands of every day. The time I have been able to spend with the young people and families in our community and with those who dedicate time and energy to support us gives me perspective and a focus on the bigger picture.
The day to day hard work propels us towards our mission to be there for our families for every part of their journey. I very much hope to see as many of you as possible at our upcoming events.
Action Duchenne would like to thank the following sponsors who have provided financial support for this project but have no involvement in this project: HM Government (in partnership with the National Lottery Community Fund), Pfizer, PTC Therapeutics, Roche, GWF, Sarepta Therapeutics and all the individuals who made their contributions to make these projects happen.
My experience as a mentor on the Yes, I Can Residential Weekend
