About us Our team Shelley Simmonds - Chief Executive Officer & Duchenne Parent I am Mummy to two children: daughter April and little brother, Fraser. In 2014 at the age of just 11 months, Fraser was diagnosed with Duchenne – we have no family history. Since my son’s diagnosis, I have been an active advocate for the Duchenne community and for Disability Rights as a whole by campaigning to improve society perceptions of inclusion, accessibility and equality – I want to ensure everyone with Duchenne and Becker muscular dystrophy have the fulfilling lives they deserve. I have a 20 year professional career specialising as a Company Secretary with experience in HR, operations and governance practices. I am a patient representative for the Genomics England ‘100,000 Genomes Project’, sitting on their Patient Participation Panel, Ethics Advisory Committee and Children & Young Persons Review Group. I have spoken at many public engagements to raise the profile of Duchenne including at the Houses of Parliament and with NHS England, and I am a graduate of the 2018 European Organisation for Rare Diseases (EURORDIS) Summer School for expert patients and researchers. "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 [email protected]."