Creating a Shared Vision for Our Duchenne Community – Reflections and Thanks

Creating a Shared Vision for Our Duchenne Community – Reflections and Thanks

Wow, what an amazing two days we have had together at our Annual International Conference 2023. The team here at Action Duchenne was so proud and honoured to be able to bring together families, patient experts, clinicians, healthcare professionals, industry and equipment providers. Our theme this year was ‘educating, supporting and empowering’ and we feel that this was reflected throughout the event. 

I felt so privileged to witness families sharing their experiences, building friendships and giving each other the kind of support that can only come from true understanding. Our speakers delivered such varied sessions, covering all aspects of Duchenne and designed to empower with knowledge and strength. I am so honoured and proud to serve the charity and our Duchenne community – our conference shows the peer-to-peer support that is at the heart of our supporting families programme, and how a genuinely people-powered support system can give families knowledge, skills and confidence to manage their own health conditions, and connect people to one another in supportive social networks. 

I would like to share a snippet of feedback that we think sums up the feelings of all those who attended the conference:

“Excellent content, fantastic speakers and well organised conference. We attended the conference last year and it changed our life forever. It was very nice to meet your wonderful self, Harry Hill and your team again. We met some of my best friends to this day and were able to share so many stories and memories with them. We would DEFINITELY recommend this conference to other families.” Kerry, Duchenne parent

“It was wonderful to meet you all in person this weekend and experience my first Action Duchenne conference. You put together such an incredible few days of content and connection. It was humbling to meet some families, listen to the awards, attend the sessions and hear the questions being asked as well as the challenges they are dealing with, but also the hope and support they have by attending and knowing they are not alone. It’s clear you play a critical role in supporting DMD families in the UK.” Chelley Casey, VP Patient Advocacy Wave Life Science

The family orientated nature of our event meant that everyone from the toddlers to the grandparents were included, creating an atmosphere of community in every sense of the word. It was wonderful to see the highest number of children we’ve ever had accessing our free professional creche facilities as well as the huge success of our Hang Out area for young people. As well as taking part in gaming workshops with MindJam, hand-on science experiments with Sublime Science, rocking out with Rokzkool, releasing their creative sides with our art therapist and our traditional lego building, children and young people living with Duchenne and their siblings were able to spend precious time together. It was such a highlight for me to observe their confidence grow over the two days through their mutual understanding for each other and the developing relationships which I know will continue to build each year. The performance at our Friday Dinner Dance from those who had taken part in the music workshops was a clear illustration of this and set the tone for an evening of lovely food, conversation, dancing and celebrating being together. 

Our first AD Champions Awards ceremony, presented by Patron Harry Hill,  reflected the theme of the conference this year, recognising the huge contribution that many of you make to enable us to continue our much needed work. Having our Patron Harry Hill with us to present the awards and to meet the young people in the Hang Out and walk-about really was a real lift and touch of showbiz! Action Duchenne exists to support and serve the Duchenne community and I want to thank Harry Hill for helping us to do this.

“This was the first time my husband and I have attended the Action Duchenne Annual Conference. We have received a diagnosis of Duchenne for our son four months ago and are very much in the early stages of learning about the condition. There was a lot packed into two days, but we thought the conference was excellent – interesting and relevant topics, good speakers and very well organised. This weekend we met some of the most incredible families and were able to share our experiences. Our favourite moment was when our daughter played in a band with Harry Hill and Florence – it’s so nice to see her laughing again! We are looking forward to next year.” Caroline, Duchenne parent

We are here for every child, young person, adult living with Duchenne and their family, for every stage of your journey. We know that a Duchenne diagnosis is devastating and life changing. We know that while there are many exciting developments in research, nothing happens fast enough when it is your child and your family. 

But while the research continues, it is our mission to support you to live the very best life you can with Duchenne. I ask you to have hope. There is hope outside of research. Hope for continued improvements in standards of care, education, physiotherapy, technology and inclusion which will give children, young people and adults a better quality of life. Hope in building a community and a team around you to give you strength. Hope in gaining the knowledge that will give you the power you need. Hope in navigating a different future than the one you might have imagined, but one in which you and your family can thrive.

I hope the conference has helped patients and their families to gain a better understanding of the condition, as well as learning about current and future treatment options. Our Q & A sessions with clinicians and with pharmaceutical companies were a unique opportunity for families to meet and listen to clinicians and researchers, and hearing about the work they are doing gives us all much hope for the future. The panels were a testament to the collective efforts aimed at providing a safe environment for families and strong support networks within the Duchenne community. 

Thank you!

We would like to express our thanks to our sponsors and  the exhibitors – thank you for your generous financial support  which made it possible for us to bring the conference to Duchenne families from the UK and across the globe.

We also wanted to express our sincere gratitude to our speakers for giving us your time, insight and knowledge, and for your kind gesture, and we could see the impact it had already on our Duchenne families.

We also wanted to take a moment to express our heartfelt appreciation to our Patron Harry Hill for his trust and loyalty, we truly appreciate that he “really stayed quite some time at the conference, not just a brief hi and bye”!

Thank you also to our team of skilled and knowledgeable volunteers, trustees and colleagues. Your passion is infectious and so evident. Thanks so much for your precious support and assistance in enabling this conference to run so smoothly.

Action Duchenne exists to support and serve the Duchenne community. 

Huge thank you for helping us to do this!

I would like to finish the blog by sharing some words from one of the inspirational young men living with Duchenne as he accepted his award from Harry Hill during our ceremony. 

“I want to tell my 10 year old self and all those boys living with Duchenne that anything is possible if you want it, and that you can live your dream.” Sanjeev Mann 

Plans are already underway for the Action Duchenne International Conference 2024, taking place on Friday 8^th and Saturday 9^th November 2024. 

With this in mind; please ‘save the date’.

*Images from Joanne and Andrew Gregory from Andy Gregory Photography