Volunteer Chair - Action Duchenne

What will you be doing?

Key Skills:

Provide leadership to the charity, acting as the guardian of the organisation’s charitable mission and purpose. Ensure that the board operates within its charitable objectives, provides a clear strategic direction for the charity, and fulfils its duties within financial scrutiny and risk assessment. Maintain a constructive and positive relationship of support and challenge between the CEO and the wider organisation. Establish an open and collaborative relationship with the CEO and the Senior Leadership Team, ensuring they are held to account for achieving the strategic objectives whilst respecting the boundaries between the two roles. Support the CEO to represent the interests of Action Duchenne externally where appropriate.

What are we looking for?

About you: Action Duchenne strongly believes that everyone has talents to offer and share in many ways through peoples’ personal, volunteering, and working lives. We are keen to recruit trustees who have experience in one or more of the following areas: 

Legal and governance HR Fundraising and business development Lived experience of disability (either personal or as a parent/carer). Proven Chair or board leadership credentials, with the ability to manage a high calibre Trustee group.

What difference will you make?

Action Duchenne has a clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy.  We work to achieve our vision by:

supporting the Duchenne community – to bring people together to share their experiences and learn from each other; working with the NHS to improve care and provide their patients with the earliest possible access to approved medicines; funding research into potential therapeutic strategies for everybody living with Duchenne; and helping to create an inclusive society where everybody is equal and disability is accepted

We are a charity that supports disabled individuals, campaigning for inclusion and equality. We’ve supported families in getting their houses adapted so their child can live as full a life as possible; we advocate for families in meetings in school to ensure those living with Duchenne are supported; we’ve helped young people living with Duchenne find jobs, and lobbied for improved care and access to approved medicines. The long-term nature of our activities makes us unique in terms of the depth and quality of our work, providing a deeply impactful experience for our children, young people and adults living with Duchenne and their families, and a positive ripple effect that can be seen in their improved quality of life, in their education and in their communities.