It is so lovely to see so many familiar faces here, to meet new ones as well. My name is Florence Boulton. I’m the CEO of Action Duchenne. I joined the charity in February 2020. It is incredible to think this is my sixth Action Duchenne Annual International Conference!
Joining the has been one of the most rewarding experiences of my life. I have been inspired time and again by the strength, courage, and resilience of our families. Each year, this conference reminds me of the power of coming together, sharing our experiences, and supporting one another. To many of us, this conference is more than just a series of talks; it’s a chance for us to learn from each other, connect, and feel part of a united community. Together, we are building a stronger network where no one feels alone.
Over the next two days, we will have the opportunity to hear about the latest advancements in Duchenne science and clinical trials. We will cover key topics like nutrition, improved standards of care, and advocacy. There will be sessions dedicated to wellbeing, alongside spaces to relax, such as our Pit Stop, Hang Out area and the crèche for little ones. This year’s conference we have introduced a new key Session Highlights, to help you digest the latest scientific advancements with ease. Our conference is about the people, the conversations, the connections you will build. Small group session and networking opportunities are all here to help you to connect with others who understand the journey you are on
In the past year, our All-through Support Programme has helped 885 families, offering vital support from diagnosis through to adulthood, supporting families through end of life and bereavement. While we continue to invest in clinical trials and research, we are firmly committed to supporting families every steps of the way.
Of course none of this would be possible without you! We have 344 registered attendees – this includes everyone attending the conference over the 2 days. A very warm welcome to you all!
To our 189 families including 63 children and young people, and 9 adults who are also speakers. It is very lovely to have you here! We have families from Portugal, Switzerland, Ireland, Egypt, United States, Netherlands, Germany.
A huge thank you to our sponsors. Thank you for making it possible for families to attend this conference free of charge. Thank you for funding travel grants. It is because of you, we have brought everyone here today. Your commitment truly makes a difference. Thank you to our amazing 14 volunteers including our 7 Action Duchenne Trustees. Thank you to our much-loved Patron, Harry Hill. And thank you to our 279 Action Duchenne Members and other supporters and fundraisers. Your contribution inspiring hope and unity in our community. Thank you to our speakers. Our wonderful 42 Keynote Speakers. Your contribution enriches our conference and inspires all of us.
And, to my fantastic AD team – YOUR contribution to the success of our charity is truly appreciated.
I encourage all of you to make the most of this conference: ask questions, share your stories, and connect with one another.These moments of connection are what make our community even stronger.
OUR vision remains clear: A future where Duchenne is no longer life-limiting. We will keep pushing forward, investing in research and clinical trials, support families programmes HELP families every stage of the journey.
Before we get started, I would like to point you towards our 2024 Impact Report, which showcases what we have achieved together and the future ahead.
Thank you for being here. Thank you for being such an important part of our community journey. Let’s try to make this conference a memorable one
Now, it’s my pleasure to introduce our amazing team mate. Ravi has lived through the challenges of Duchenne. He has become a true role model. He has pursued his dreams. Completed a degree in Business Management. Now leads our Supporting Young People Transition to Adulthood programme. His story is one of resilience, kindness, and inspiration.
