Welcome from 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 has 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 journeys. 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
Background and Direction
Action Duchenne is a charity providing holistic support to those living with Duchenne Muscular Dystrophy (Duchenne) and their families. Our core activities involve bringing people together to share their experiences and learn from one another, increasing awareness of Duchenne, and bringing together families, Clinicians and pharmaceutical companies to increase understanding of the needs of those living with Duchenne. We provide support for families from the moment of diagnosis through their whole Duchenne journey.
We have been through a period of change and development, and are now looking to expand our Trustee Board with people with the following skills:
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Finance (a Treasurer role is available)
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Charity Governance
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Fundraising
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Legal
We have recently been awarded significant funding from the National Lottery, which is enabling us to develop and increase the reach of our programmes.
Trustee Role and Person Specification
The Trustees of Action Duchenne are 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
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ensure that the charity is carrying out its purpose for the public benefit
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Comply with governing documents and the law
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Act in the charity’s best interests
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Manage the charity’s resources responsibly
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Act with reasonable care and skill, and
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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.
Essential Criteria
Applicants must clearly demonstrate:
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A strong commitment to the holistic approach of support
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Relevant skills and experience drawn from a professional background
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A willingness to devote time to the governance of Action Duchenne, including preparing for and attending Board meetings and Away Days
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Emotional intelligence to understand the physical, mental, social and emotional challenges facing those living with Duchenne
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An understanding and acceptance of legal duties, responsibilities and liabilities associated with trusteeship, or the willingness and ability to acquire this
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Strong independent judgement and the ability to constructively challenge ideas on the Board and with the CEO
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Proven ability to work creatively and strategically in a Trustee or Board setting.
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Strong communication and analytical skills
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.
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Finance experience and skills
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Governance experience and skills developed through time on a Charity Board
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Fundraising experience and expertise, with evidence of success across different income streams
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Legal experience
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 for a chat before making your application.
Time Commitment
The Trustees currently meet 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
If you would like to have a chat about the role first, please contact Vicky Pleydell, Chair, via our website. 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 through the Apply button before the closing date.
Closing date for applications
Applications will close on 9am on Tuesday 26th August, with interviews aiming to be held in the week commencing Monday 18th August.
Registered Charity
11 - 20
Action Duchenne is a charity providing holistic support to those living with Duchenne Muscular Dystrophy (Duchenne) and their families.
The client requests no contact from agencies or media sales.
Thank you!
Trustee Recruitment - Lead with Purpose: Become a Trustee and Help Achieve a Life Unlimited.
Your experience. Your voice. Your impact.
- Flexible location: home based/ hybrid
- Flexible commitment: approx.an average of one day per month comprised of preparation for and attending meetings, away days and other Trust related activities
- Voluntary role (reasonable expenses reimbursed for travel to attend meetings in person)
- Multiple positions available
About us
At Cystic Fibrosis Trust, we believe in a world where everyone with cystic fibrosis (CF), can live a life unlimited — and we’re inviting passionate individuals to join us on this powerful journey.
Cystic Fibrosis Trust is the UK’s leading charity dedicated to uniting for a life unlimited for everyone with CF – one of the most common life-limiting genetic conditions.
Our team of dedicated staff, volunteers, and Trustees works alongside people affected by CF to fund life-changing research, promote world-class clinical care, and provide essential advice and support. We champion a community that is united by strength, compassion, and hope.
Our work relies on the generous donations of our supporters.
About the role
This is more than a governance role — it’s an opportunity to help guide strategic decisions that impact lives, influence national initiatives, and accelerate progress for a community that deserves nothing less than a brighter future.
As a Trustee, you’ll play a pivotal role in shaping our vision, values, and strategic direction, developing our aims, objectives, and goals. Your leadership will help us make decisions that matter, and your voice will help steer us toward a stronger, inclusive future. Trustees typically serve a three-year term, with the option to continue for a second.
Who are we looking for?
We welcome applications from individuals of all backgrounds and experiences.
Due to our normal rotational retirements and trustee terms of office we have several vacancies. We are keen to increase the representation of people with lived experience of CF and are particularly interested in applications from all people who can offer professional skills and experience in:
- finance and accountancy
- legal practice/law
- fundraising and income generation
- marketing and communications
- data and digital strategies
- basic science research
- non-clinical CF professions (e.g. psychology or social worker)
As part of our long-term succession planning, we would also welcome interest from candidates who may be open to taking on additional Board leadership responsibilities in the future, e.g. Chair, treasurer, or committee roles.
The cystic fibrosis community is diverse, encompassing people of all ages and backgrounds. We are committed to ensuring that this diversity is reflected on our Board. We are especially interested in hearing from those with lived experience of CF, disabled individuals, and candidates from Black, Asian, and minority ethnic communities, as well as LGBTQI individuals. We value fresh perspectives and encourage applications from first-time trustees.
Why Join Us?
- Make a meaningful impact on the lives of people affected by cystic fibrosis.
- Engage with dynamic peers who are driven, forward-thinking, passionate and purpose-led.
- Help drive an inspirational mission that blends science, support, and community.
- Play a critical role in shaping our strategic direction, ensuring robust governance, and championing equity, diversity and inclusion.
- Gain valuable experience in governance and strategic planning.
- Use your expertise to fuel lasting change.
If you are passionate about making a difference for people with cystic fibrosis, this is your moment.
Important Dates
- Closing date for applications: Wednesday 20 August 2025
- First interview: Week commencing 8 September 2025
- Second interview: Week commencing 15 September 2025
Ready to Make a Difference?
Please download the Trustee Recruitment Pack (see below) for more information including full role description.
And then select the ‘Redirect to Recruiter’ button above to take you to the application portal. You will need to have your up to date CV outlining your career history, including responsibilities and achievements and a covering letter explaining why you want to be a Trustee, what skills you can bring to the Board of Trustees and what you want to take away from this opportunity.
We look forward to receiving your application.
The client requests no contact from agencies or media sales.
Thank you!
Support inclusive spirituality, education, and compassionate leadership
OneSpirit Interfaith Foundation is a registered educational charity, founded in 1996, that promotes inclusive spirituality and serves people of all faiths, and none. We train open-hearted adults to serve their communities as interfaith ministers, celebrants, and spiritual companions, supporting life’s important moments through ceremony, ritual, and compassionate care.
Organisational purpose
To benefit the public by the education of mature adults in:
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the core principles of the world’s religions, faiths, and spiritual traditions;
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principles and methods of forgiveness, reconciliation and peace-making;
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and the practice of non-denominational spiritual and pastoral service in the community.
Our Vision
is a world in which humanity awakens into an inclusive global spirituality that encompasses us all in the field of love and life.
Our Mission
is to work towards evolving consciousness in the world, by facilitating open-hearted people to awaken to inner leadership and their capacity for forgiveness, reconciliation, and peace-making.
We are currently seeking new Trustees to join our Board and help shape the future of our organisation. We're especially interested in individuals with experience in marketing, legal affairs, HR, adult education, fundraising, finance, or IT.
This is a meaningful opportunity to:
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Help guide an organisation where spiritual exploration meets learning, where inclusive communities flourish, and where people are supported to offer spiritual care with courage, compassion, and understanding.
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Contribute your professional skills in a nonprofit trustee role aligned with your values
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Help grow an organisation at the intersection of education, spirituality, and social transformation
What We’re Looking For:
We welcome applications from individuals with experience in any of the following areas:
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Marketing, communications, or branding
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Charity law or legal compliance
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Fundraising, development, or grant-writing
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Finance, accounting, or business planning
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Human Resources or organisational development
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Education or curriculum development
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Interfaith ministry, chaplaincy, or spiritual direction
That said, please don’t be discouraged if you don’t tick every box. If you feel inspired by our values and can uphold our Code of Ethics, we warmly encourage you to apply or get in touch for a conversation!
You do not need to be a OneSpirit minister or graduate, we welcome interest from both alumni and the wider community.
Why Join Us?
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Be part of a values-led, inclusive team committed to compassion and transformation
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Support a charity making a meaningful impact in spiritual education and interfaith work
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Develop new skills in nonprofit governance and strategic leadership
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Connect with a thoughtful, heart-centred network of trustees, staff, and ministers
Commitment to Inclusion:
We believe our strength lies in the richness of our differences. We are wholeheartedly committed to building a Board that reflects the diverse communities we serve, across race, gender, age, sexuality, ability, culture, faith, identity, background, and lived experience.
Whether your path has been traditional or unconventional, whether you’re seasoned in governance or bringing your voice to a boardroom for the first time, you are welcome here.
If you feel called to contribute, we would be honoured to hear from you.
Interested in Joining Us?
At OneSpirit, there are many ways to contribute to a more compassionate and connected world. Whether through leadership, service, or spiritual growth, your presence makes a difference.
If you feel drawn to our mission and want to offer your time, wisdom, and heart to OneSpirit’s future, we’d love to hear from you.
You can learn more about our team, our work, and our organisation on our website.
Curious about the training we offer? Come and train with an organisation committed to spiritual exploration, nurturing inclusive communities of care, and creating spaces where understanding and belonging can flourish. Explore the Cherry Tree Pathway, our two-year ministry and spiritual development training, and begin your journey today. Learn more about our training from our website.
The client requests no contact from agencies or media sales.