Searching for a cure, Improving lives

Life Members

Nic Catlin - Our Founder and our first Life Member

Nic Catlin - Our Founder and our first Life Member

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 Culhane

Damian Culhane

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.

Mary Down

Mary Down

Mary stepped down as a trustee last summer after 4 years. She remains fully committed to Action Duchenne’s aims and objectives and continues to fundraise and advocate for duchenne families in the SW of England.

John (Ian) Henderson

John (Ian) Henderson

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.

Donate

Support Action Duchenne with a monthly or one off donation

Donate

Events

View our events

View All Events

Registry

Join the DMD registry for access to clinical trials

Register

Summit presents data from Phase 1 clinical programme of lead utrophin modulator, ezutromid

June 22nd, 2017

Summit Therapeutics has today announced the presentation of clinical data from two Phase 1 clinical trials

Tell me more

What Raxone being given approval through the EAMS scheme means for the Duchenne community

June 22nd, 2017

  Over a number of years we have worked closely with Santhera Pharmaceuticals and other

Tell me more

Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

wordpress counter

Stay informed with regular updates from Action Duchenne