Action Duchenne Annual International Conference 2024 was an unforgettable gathering of patients, families, experts, and supporters, all brought together to Educate, Connect, and support Wellbeing. Over two days, we hosted 368 attendees across 26 sessions, offering both learning and community-building moments. Reflecting on the experience, I’m thrilled to share some of our conference highlights and successes with you.
Educating, Connecting, Wellbeing
As I reflect on our 2024 International Conference which took place last Friday 8th and Saturday 9th of November, I want to return to the objectives as we set them when we began to plan. Our theme, ‘Educating, Connecting, Wellbeing’ guided our goals from the start. We wanted to bring together individuals living with Duchenne and their families, patient experts, clinicians, pharmaceutical companies and industry and equipment providers to gain knowledge, connect with each other and to focus on their wellbeing as individuals and as a family.
As CEO of Action Duchenne, each conference gives me new things to learn, a renewed focus for our work and leaves me with yet more drive to support the amazing members of our community. I want to share with you my 5 highlights from this year.
Clinician and Pharma Q&A
Our Q&A sessions in our Duchenne Science stream truly represent what our conference is all about. Part of the Duchenne Science stream, the Pharma Q&A brought together representatives from leading pharmaceutical companies and Biotechs moderated by clinical and academic experts in the field. Hosted by Dr Annemieke Aartsma-Rus and Professor Franceso Muntoni, with the panel made up of PepGen, BioMarin, Sarepta Therapeutics, Edgewise Therapeutics, Dyne Therapeutics, ITF Pharma UK, Santhera Pharmaceuticals and Roche, this session gave members of the Duchenne community an unmissable opportunity to ask the experts about Duchenne research and drug development.
Our Clinician Q&A, hosted by Mehreen and John fron the Action Duchenne team, boasted a panel of clinicians who brought knowledge and expertise from a variety of fields within Duchenne care. Covering everything from Psychology, Cardiology, Physiotherapy and Bone Health, we were honoured to have Dr Chris Edwards, Dr Rory Conn, Marion Main, Dr Kahdim, Dr Chloe Geagan and Dr Lekshmi Desikan answering questions from families. I am incredibly grateful to both of our panels for the unwavering commitment and dedication they have to serving our community, working tirelessly to improve the lives of those living with Duchenne.
We know that it’s hard to digest all the different information that’s available during the 2 days. To help with this, we asked each speaker to share their main takeaways for their session, which we compiled in the conference brochure for easy reference post-conference over the coming weeks and months. We want to thank all of our speakers for giving us their take-aways which will continue to be of huge value to everyone attending.
The Break Out Areas
Our conference truly is an event designed to support our families, and nothing demonstrates this more than our Hang Out area. For young people aged 10 – 17, it gives those living with Duchenne and their siblings their own space, away from the sessions and independent from parents. This year, we had a record number of young people in our creche and Hang Out, demonstrating just how important it is. The Hang Out welcomed back MindJam, who provide emotional and SEN support to children and young people through gaming, game design and digital skills, and Rokzkoo Academy, who work with young people to develop confidence, friendships and skills through music. It was a hit with the adults too, with Professor Francesco Muntoni showing off his skills!
These amazing organisations and volunteers created an inclusive, relaxed atmosphere which enabled our young people to connect, share experiences and enjoy the conference in their own right. Supporting young people living with Duchenne is a key part of our All-through Support programme, and I am very proud that our conference reflects this. We hope that those attending our Hang Out will become involved in our Yes I Can and Turning Point projects going forward, and that they will continue to feel part of our growing network of young people living with Duchenne.
“The kids absolutely loved the hangout and Rock z Kool. They look forward to it all year being with friends who get it and are the same it’s so wonderful to see how easy they relax and just have a great time” Duchenne Parent and Conference Attendee
We were really excited to have a brand new addition to our conference this year in the form of our Pit Stop area. Headed up by our Support Officer Kelly, the Pit Stop focussed on wellbeing. Understanding that attending the conference can sometimes feel overwhelming and emotional for parents and family members, this area gave people space and support when they needed it.
With counsellors, care advisors and AD staff on hand to talk to, a trained masseuse giving aromatherapy massages, headsets with calming music and the space to choose to be quiet or to talk, our Pit Stop was a hub of wellbeing support throughout the two days. We were able to hold our group support for grandparents, dads and mums in person rather than online; a chance to make new connections and cement those already made.
“It was a pleasure to be asked to be part of the Pit Stop at the Action Duchenne Conference. It highlighted the amazing work and dedication the charity provide for people living with Duchenne and their families.
The conference was incredibly well organised and showcased the hard work the team has put in. I’m hoping to be part of the conference in the future.” Lianne, Holistic Practitioner, Balance Therapy
Giving voice to lived experience
I was humbled to be joined in our Welcome Remarks this year by my colleague Ravi Mehta. Ravi lives with Duchenne himself and uses this experience and expertise to inspire many of our young people in our transition to adulthood project. To open our 2024 conference with his words, as well as those from Chair of Trustees and Duchenne parent Gary Fegan, set the perfect tone for the event. I know that I was not alone in being moved and inspired by Ravi’s speech, and that it will have had a meaningful impact on everyone who heard it.
This emphasis on the value of lived experience alongside the voices of clinicians and experts was continued throughout the conference. Our “hear from the community” panels discussing housing adaptations and transition stages focussed on parents and carers sharing what they have learned in order to help others. The Pathfinders Neuromuscular Alliance joined us in our Living with Duchenne stream to discuss accessible gaming and travel, and one of our final sessions of the conference was hosted by Ravi and featured 3 amazing young men who live with Duchenne. They shared their experiences of living independently, maintaining their mental health and wellbeing, accessing further education and employment and much more. The drive of those taking part to help other around them is amazing, and the session was full of both practical advice and hope for the future.
AD Champions and Pledges
On Saturday 9th November, we held our second annual Action Duchenne Champions Awards Ceremony. I was honoured to host this alongside our Fundraising Officer Victoria, and we were thrilled to be joined on stage by one of our amazing young people, Isaac White. Isaac and his family have been long-term supporters of our charity, and having Isaac with us made the ceremony feel very special. Our AD Champions Awards are given to members of our community in recognition of their contribution to our work. As well as those who have done fundraising events, we also recognised young people who have contributed to our programmes and those who raise awareness. As a small charity, we continue to rely on your support so that we can continue to deliver our much-needed work, and our awards our way of thanking our community for making this possible. I was delighted to be able to present each recipient with a framed certificate which had been signed by our wonderful charity patron, Harry Hill.
Our pledge board was another new addition to the 2024 conference, encouraging attendees to pledge their support in whatever way they wanted. We had a variety of pledges, from hosting a reindeer run at school, hosting a charity dinner dance to doing 79 jumps on a pogo stick and walking 10km.We have now made an online ‘Pledge Board’ on our website and we’d love you to get involved in any way you can; pledge to do a fundraising challenge, run your own event, give a donation or even to provide ongoing support to our work by becoming a member.
We were also pleased to announce the winners of our 2024 Christmas card design competition. It was a tough job to choose between some wonderful designs and we are really grateful to everyone who entered. Our cards are now available for you to buy in our shop, so if you are sending Christmas cards this year, please think about sending ours.
Connections
My final highlight must be witnessing our community coming together as one. It is difficult to convey in words the power of the atmosphere created during the conference; it is unlike any other event I have been part of. To see families sharing their challenges and their triumphs, the strength, hope and support is palpable. Each year it reignites my drive to fulfil our vision of a world where lives are no longer limited by Duchenne muscular dystrophy.
I want to thank our sponsors, who made it possible for us to offer free tickets to those living with Duchenne and their families, our amazing speakers who shared the expertise and their experiences, our exhibitors, those who ran activities in our Hang Out, out, our wonderful volunteers, and most importantly our Duchenne community who make our conference the special event it is every year.
“Your team has created a wonderful platform for communication, gaining knowledge, sharing experiences and having a good time!” 2024 Conference Attendee
As I reflect on the community we have built and the connections formed over these two days, I am inspired and energised. Together, we’re building a future free from the limitations of Duchenne. Please consider joining us in this effort, whether by joining us as a member, pledging, volunteering, or simply connecting.
We are stronger together, and together, we can achieve even more.
