Nick founded Parent Project UK in 2001 and then moulded the Charity into Action Duchenne where he was its first CEO and the driving force behind much of the Charity’s current aims and objectives. Through his vision, Action Duchenne led the development of new genetic treatments for Duchenne Muscular Dystrophy and new programmes to support the assessment and intervention for those with learning and behaviour problems. He recognised the need for, and led the development of, the first national on-line Clinical Trial Registry for Duchenne Muscular Dystrophy: the fact that this is still a European leader in content and complexity is a testament to Nick’s vision. The Trustees were delighted when, after nearly 11 years at the fore-front of leading the fight to find a cure for duchenne, Nick has become the Charity’s first Life member.
Damian retires from the board of trustees as one of its longest serving members. He is a qualified Coach, Master Practitioner of Neuro-Linguistic Programming and an accredited Master Practitioner of Hypnotherapy. He has offered to continue to serve the duchenne community in a professional capacity and he is riding from Land’s End to John O’Groats this summer in order to continue to raise funds and awareness into finding a cure for Duchenne.
Ian also retires from the board as a long time serving member. His oldest son has Duchenne Muscular Dystrophy and, following his diagnosis, allowed him to make use of his original degree training in microbology and his masters in biomedical technology. During his tenure, he served on the Scientific and HR sub-committees: he was instrumental in setting up much of the Charity’s current strategic vision.