Action Duchenne is looking for new members to join our team! We have been through a period of change and development and are now looking to expand our Trustee Board.
Welcome from the Chair
“Welcome to Action Duchenne. I became Chair of the Charity in January 2025. By background, I am a retired GP and NHS Leader, and my grandson Sebastian lives with Duchenne Muscular Dystrophy. The Charity has been going through a period of significant change, as our previous CEO has moved on and several of our Trustees have retired. It has given us the opportunity to review and refresh our focus and our ways of working together.
We have also recently been awarded significant funding from the National Lottery over the next three years to develop and expand our All Through Support programme. The programme offers tailored support to families over years as they navigate the different challenges Duchenne brings and aims to travel alongside them throughout their journey. No other statutory or charitable organisation is able to offer
this level of support. We want to expand and develop the Trustee Board to harness a wider set of skills,
expertise and experience that will enrich the charity as we go forward. It is an exciting time to join us, and to be part of something that makes a real and tangible difference.
We look forward to hearing from you.”
Dr Vicky Pleydell, Trustee Chair
Trustee Role and Person Specification
Trustees of Action Duchenne are in pivotal roles, providing oversight and ensuring legal compliance. Board members are each expected to actively participate in quarterly meetings, and in turn are expected to dedicate sufficient time to the role.
The Trustees appointed will become Directors of the Company limited by guarantee (no: 04899036) and a Trustee of the registered charity (no: 1101971) and therefore need to be eligible to take on these roles.
All Trustees must
- ensure that the charity is carrying out its purpose for the public benefit
- Comply with governing documents and the law;
- Act in the charity’s best interests;
- Manage the charity’s resources responsibly;
- Act with reasonable care and skill; and,
- Ensure the charity is accountable.
The Trustee role is voluntary and unpaid, but reasonable expenses will be met. The majority of formal meetings are conducted remotely through emails and conference calls, with bi-annual away days.
Skills
Action Duchenne is looking for new Board members with a wide range of skills; please note these are a few areas of focus, but we are also looking for general Trustees, so please apply as we are looking to grow the Board in a number of ways.
- Finance experience and skills
- Governance experience and skills developed through time on a Charity Board
- Fundraising experience and expertise, with evidence of success across different income streams
- Legal experience
Essential Criteria
Applicants must clearly demonstrate:
- A strong commitment to the holistic approach of support
- Relevant skills and experience drawn from a professional background
- A willingness to devote time to the governance of Action Duchenne, including preparing for and attending Board meetings and Away Days
- Emotional intelligence to understand the physical, mental, social and emotional challenges facing those living with Duchenne
- An understanding and acceptance of legal duties, responsibilities and liabilities associated with trusteeship, or the willingness and ability to acquire this
- Strong independent judgement and the ability to constructively challenge ideas on the Board and with the CEO
- Proven ability to work creatively and strategically in a Trustee or Board setting
- Strong communication and analytical skills
Lived experience/diversity
The Board currently has a majority of Trustees with lived experience of Duchenne, and therefore in this instance, we are looking for those without personal experience. If there is a reason relating to accessibility or diversity in which you feel you can’t apply for this role, please contact us at hr@actionduchenne.org for a chat before making your application.
Time Commitment
The Trustees currently meet bi-monthly, and aim to move to quarterly meetings. For each meeting, there is an expectation of pre-reading and preparation, and where there is capacity and appropriate expertise, Trustees can advise on their anticipated standards relating to areas of work (safeguarding, fundraising, HR, for example). The anticipated time commitment is likely to be 4-8 hours a month, with the away
days in addition to this. A trial period of six months is offered, to ensure the fit works for both the new Trustee and the Board, and a maximum term of three years, with the opportunity to be re-elected once, to serve for a total of two terms – six years.
How to apply
Please share your CV and a short covering letter (no more than two A4 pages) noting why you would like to be a Trustee of Action Duchenne, how you align with the Charity, and what you feel you can give to the organisation to hr@actionduchenne.org before the closing date.
Closing date for applications
Applications will close on 9am on Monday 4th August, with interviews aiming to be held in the week commencing Monday 18th August.
