At Action Duchenne we aim to do our utmost to communicate the many promising Duchenne and Becker Muscular Dystrophy research projects and developments.  Our work is focused on the entire community and today our Board is excited to announce new key appointments to compliment the Action Duchenne team, as well as news of changes at the top of our operations.

We are delighted to announce that we have appointed a new Director of Research, a key role in the charity. Neil Bennett is known to many in our field, having previously worked at MDUK. A Cambridge post-graduate, Neil specialises in research communications and has a niche skill in explaining research in lay language, identifying key performance metrics in research and communicating science in a way to bring it to life to everyone. He will be invaluable to our community in understanding more about Duchenne and Becker research, clinical trials and the prioritising of access to emerging treatments.

Neil says: “It is really exciting to be returning to work within the Duchenne and Becker community and to join the Action Duchenne team. With research and clinical trials into potential new treatments gaining momentum, we’ll be working hard to identify innovative areas to support. I’m also looking forward to communicating the results of Duchenne and Becker research and clinical trials to families and the community.”

Joining Neil is Peter Duffy, as Director of Campaigns & Strategy, a new role which reflects our commitment to engaging with all parts of the Duchenne community.  Peter brings a wealth of new media knowledge, as the founder and driving force behind Muscle Owl, a media channel dedicated to changing attitudes to disability and reporting on campaigns and scientific research. Peter’s personal experience, living with his brother Andrew, 26, who has Duchenne, his understanding of disability and his previous employment across the charity sector, will be key assets to Action Duchenne.

Peter says: "I am delighted to be joining Action Duchenne.  It is an exciting and important time for Duchenne research, and as we move forward in our digital age, we are able to support each other and help families more than ever.  With many years of experience working in the Duchenne community and the wider charity sector, I am very much looking forward to helping the charity grow and continue its vital support for the community.”

After seven dedicated years at Action Duchenne, current CEO and Director of Research, Diana Ribeiro, is leaving the organisation in July. Diana has shown superhuman commitment covering several aspects of the charity’s activity. Diana is well known in the wider community for her knowledge and for facilitating cutting-edge translational research, policy and campaign advances for those living with Duchenne and Becker Muscular Dystrophy. Her achievements and impact for Action Duchenne and the international community have been immense and we cannot thank Diana enough for all she has done.  On behalf of all Action Duchenne’s friends, supporters and partners, we would like to send Diana our best wishes. There is no doubt she will continue to achieve great things.

Diana says: “The inspirational Duchenne community - it has been an enormous privilege to be part of Action Duchenne and the momentum, in improving the quality of lives of everyone living with Duchenne and Becker. Personally, I wish to thank each and every one of you for all your incredible support. Learning from you and sharing your journey has been a special chapter in my own life and one which I will take with me. I feel optimistic that with even closer international collaboration for the community, further advances will be made that will prosper all. I truly hope all our paths will meet again.”

Finally, the Board is excited to appoint Duchenne parent and advocate Shelley Simmonds as our new Chief Executive Officer.  Shelley has been an active and vocal member of the Duchenne community since 2014, following the diagnosis of her young son Fraser.  Shelley has 20 years’ professional experience working in governance and operations within the City of London financial sector, which coupled with her personal experiences, brings added strength to the charity and its supporters. Shelley is passionate about better educating society about disability and we have no doubt that this ethos alongside the strategy of Action Duchenne, will make a difference to lives.  

Shelley says: “It is an honour to be appointed as the new CEO of Action Duchenne.  The Board, staff, supporters, community and collaborative charity partners have my complete commitment in driving forward research and projects together in the best possible way.  Our vision is to have a world where lives are no longer limited by Duchenne or Becker Muscular Dystrophy – we are, and will always be, a charity dedicated to all. I welcome the opportunity to connect and unite with families, both in my capacity as CEO and as a fellow Duchenne parent – please always feel free to make contact with me.”

Action Duchenne Chair, Janet Bloor, on behalf of the Board of Trustees, says: “It is certainly ‘all change’ at Action Duchenne. We wholeheartedly thank Diana for her many years of fantastic service, and are extremely pleased with the new appointments we have made.  Their diverse skills and experience will strengthen our team and I wish to personally thank Shelley, Peter and Neil for giving Action Duchenne their commitment, together with the rest of the staff team for their continued hard work. We are grateful to have the support of the community, key stakeholders and fellow charity partners who work alongside us.”