The Trustees oversee the team’s work and most of our Trustees are closely connected to a person living with Duchenne
Mark Silverman
Mark Silverman
I live in Barnet with Abbie and our son Thomas, having been a chartered Town Planner since 1998 working for a local authority in Hertfordshire.
I have been a trustee of Action Duchenne since 2008, soon after Thomas was diagnosed with Duchenne. Since joining the charity, I have held a wide range of research and campaigns responsibilities.
Action Duchenne has been instrumental in delivering improved outcomes for the Duchenne community and I will continue to work closely with the staff and Trustees, to achieve even more for those living with Duchenne and their families.
Gary Fegan
Gary Fegan
Father to Katie, Cormac and Ronan, we found out that Cormac had DMD in 2014 after trying to get to the bottom of his antisocial behaviour. Cormac has a nonsense mutation and this led to working with Action Duchenne and other DMD charities to fight for the approval of Translarna in Scotland. Cormac was the first patient to be prescribed Translarna through the NHS in the UK via an Individual Patient Funding Request, which is how he continues to receive the drug today.
Gary said: “I’m very excited to be ask to work with Shelley, her team and the whole Duchenne community in helping to advise where technology can help to enhance our lives. I am a strong advocate for the use of technology in helping to make patients and carers life easier and hope to use my experience within IT to accelerate this in an increasingly digital world. Please send any ideas you have to me, I’m sure there’s lots out there.”
Roger Cockerton
Roger Cockerton
I am married to Lynne with two grown up daughters Lizzie (Dentist) and Georgina (Trainee Solicitor) and live in Suffolk. I am an experienced senior finance professional, a Chartered Accountant working as a contractor within the NHS. Prior to that I worked in the insurance industry mainly in the Lloyd’s market, within the broking community where I was Finance Director for a Chinese owned entity for twenty years.
I have had an interest in the not for profit sector since the 1980s and acted as a hands-on trustee treasurer for local charities and continue to do so. In addition, I have gained significant experience dealing with NHS charitable funds, preparing yearend financial statements for audit and more recently, active interaction with trustees at Southend NHS FT.
Victoria Penrice
Victoria Penrice
Action Duchenne is delighted to announce the appointment of Victoria Penrice as Company Secretary and trustee. Victoria is joining us at an exciting time and will be playing a key role in the future of Action Duchenne.
Victoria is Vice-President of the Chartered Governance Institute’s Governing Committee and qualified as a chartered secretary over 20 years ago. She has significant experience in listed companies and Victoria has been on the Committee since it was formed in 2014, having originally been elected to the Institute’s Council in 2013.
We are delighted that such an experienced Company Secretary is joining us and look forward to working with Victoria.
Victoria said,
I am delighted to be joining the team at Action Duchenne. This is a great organisation, doing important work, and I look forward to helping with the next stage of its development.
Emma Simmonds
Emma Simmonds
I live in Hampshire and have two grown up children.
I have worked in education throughout my career, both here in the UK and Australia,
where I lived for 6 years. I have spent the last 11 years working for an Independent
Specialist School and College, supporting young people with physical disabilities. I
am passionate about ensuring young people and their families have access to the
right education, and to ensure all of their health and care needs are met. I attend and
represent at SEN Tribunals and therefore have a thorough knowledge and wealth of
experience in the frameworks that underpin this legislation.
I have supported Action Duchenne and attended the International Conference
through my line of work over the years. I am really honoured to have been appointed
as a Trustee and look forward to working with Florence and Trustees to support the
Charity and its aims.
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