An Evening With Action Duchenne
Watch the recording of ‘An Evening With Action Duchenne’
At Action Duchenne we believe that when people affected by Duchenne Muscular Dystrophy receive proactive, community-led support throughout life, they are better equipped to navigate challenges, make informed choices, build supportive relationships and have their voices heard. We have been providing this vital support for 25 years which we know improves wellbeing, creates resilience, a greater independence and a better quality of life. But we want to do more – we want to reach more families, more boys and men and provide even more tailored support.
To begin marking 25 years of supporting families affected by Duchenne Muscular Dystrophy, we invited the people and organisations who have been a part of our journey to join us. This special evening was an opportunity to reflect on the impact we have achieved together, share the progress we are making today and look to the future with ambition, collaboration and hope to ensure every family receives the support they need and that progress continues for generations to come.
Our new CEO Katie Endacott spoke about our impact and our vision, and how we will get there, along with Director of Services and Safeguarding, Clare Grant about our plans for building on our current support provision to ensure that our boys and men living with Duchenne have a better quality of life at every stage. Our Chief Scientific Officer, Dr Mehreen Arif expanded on her work around supporting families to navigate an increasingly complex and rapidly evolving landscape of research, treatments, and care. Susie Croft, Director of Fundraising and Communications talked about future proofing the charity so that we can continue to be there for families so that no-one will ever have to face their journey alone.
We were honoured to be be welcoming special guest Francesco Muntoni, Professor of Paediatric Neurology who shared his reflections on the difference Action Duchenne makes to families affected by Duchenne. We were also joined by Duchenne dad, London marathon 2026 runner and Action Duchenne fundraiser Ben Dolling who is planning a special challenge to mark 25 years.
Please watch the recording below.
