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.

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Action Duchenne launches new Research Strategy for Duchenne muscular dystrophy

November 17th, 2017

  Action Duchenne, a leading UK-wide patient and parent-led organisation for Duchenne Muscular Dystrophy, is

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Long-term microdystrophin pre-clinical work, moving towards a potential therapy restores muscle function in canines

July 26th, 2017

Promising microdystrophin pre-clinical work, moving towards a potential therapy has shown to restore muscle function

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FDA new approach would reduce number of patients treated with placebo

December 11th, 2017

The U.S. Food and Drug Administration (FDA) has published its recommendation for a new approach

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Results announced from survey ‘Juggling care and daily life’

December 11th, 2017

The 17th October 2017 was an important date for the rare disease community.  The highlights of the

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Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

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