Head of Fundraising and Communications

This is a brand new role with Action Duchenne, leading our new Fundraising and Communications team. This role is part of the Senior Leadership Team.

Applications close at 9am on Monday 21st July 2025, with interviews likely to take place in the weeks commencing 28th July and 4th August 2025. To apply, please click 'Apply', where you will be redirected to our application form.

Main Purpose of the Role:

To manage, lead and support the Fundraising and Communications Team to retain donors, increase income and provide clear direction for our communications. This role will involve supporting relationships with sponsors of Action Duchenne’s International Conference, developing and implementing the fundraising and communications strategy, and reviewing our case for support for our core work and projects.

Specific Tasks:

The focus areas and key deliverables of this role are as follows:

• Develop and deliver on a clear fundraising and communications strategy, with annual action plans and clear objectives and KPIs for team members.

• Understand and keep abreast of sector trends and compliance updates relating to fundraising and communications

• Develop and maintain oversight of all budgets, targets, forecasts and processes relating to fundraising and communications

• Co-ordinate the prioritising of income streams, including community, individual giving, corporate, legacy and trust and grants

• Research, identify, and where there is capacity, pursue income generation opportunities that match the objectives of Action Duchenne

• Ensure Action Duchenne is compliant with all applicable elements of the Fundraising Regulator’s Code of Fundraising Practice, law, and the Charity Commission relating to fundraising

• Research, identify and apply to Trusts and Foundations with a clear pipeline

• Prepare reports for Trustees either for the full Board, or where required, to sub committees, which will include fundraising and communications progress against objectives.

• With a team keen to learn, provide leadership and hands on support to ensure objectives are achieved

• Undertake a review of all Communications materials, including social media and website

• Lead by example across the team and organisation

• Be part of, and therefore contribute towards and prepare for Senior Leadership Team meetings

• Identify existing or potential events to develop relationships with funders, including Action Duchenne’s annual international conference

• Feed in to the development of the international conference, led by the Head of Operations & Events

• Work with staff across the organisation to ensure all elements of work are collaborative, specifically when submitting funding bids or developing the annual international conference

• To maintain the contact database, keeping it up to date and accurate

• Continue to invest in professional development in yourself and your team, including safeguarding

• Identify opportunities, alongside the team, for cross team working - including residentials; family events; Science Educations workshops with regional meetups and education visits to schools and local authorities.

• Obtain, decipher and provide training to the Support Team on new updates relevant to Duchenne families, such as DLA, EHCP and more.

• Work closely with your team, to ensure that each family receives the best support possible, and that long-term support is provided.

• Lead on the development and delivery of monthly reporting of engagement and support contact, which will feed into the wider All Through Support journey. 

• To work with the Head of Operations and Events to contribute to Agenda topics and speakers from the community; assign roles for the conference to the Support Team.

• Establish a database for external stakeholders also supporting those living with Duchenne on a national basis, fed in to from the Support Team.

• To develop a triaging and caseload process for the Support Team, and how best to regularly monitor this.

• Be involved in the recruitment, selection, and induction of volunteers appropriate to your area of work. 

• Coordinate cover for the Support Team when there is sickness or leave.

Further details can be found on the person specification attached.
Action Duchenne is committed to having a team that is made up of diverse skills and experiences. We encourage applicants from all sectors of the community and are especially keen to encourage candidates with relevant lived experiences and those from under-represented groups to apply.