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  • Challenge 79 for World Duchenne Awareness Day
  • About Us
    • Our vision
    • Our Strategy
    • What we do
    • Our Impact
    • Our team
    • Work For Us
    • Volunteer
    • The DMD Registry
    • Action Duchenne Policies
  • Get Support
    • Mental Health Awareness Week 2025
    • Science on Tour
    • Support Calendar – What’s On
    • Support for you and your family
      • Time Out – A Space for Mums
      • Dads Against Duchenne
      • Grandparents Together
      • Open Space
      • Group Counselling Programme
    • Recently diagnosed
    • Connect with others
    • Support for 8-14 yrs ‘Turning Point’
    • Support for 14-25 yrs ‘Yes I Can’
    • Schools
    • Siblings
    • End of Life and Bereavement
  • AD Annual International Conference
    • SAVE THE DATE for the Action Duchenne Annual International Conference 2025
    • Highlights from the Annual Action Duchenne Annual International 2024
    • Annual International Conference 2023 Video Recordings
    • Annual International Conference 2022 Recordings
      • Adults with Duchenne
      • Growing up with Duchenne
      • The Duchenne Journey
      • What is new in Duchenne research?
  • News, Webinars and Blogs
    • News
    • Webinar Series 2025
      • Webinar Series 2025
      • Webinar recordings
    • Bite-Sized Duchenne Science Live
      • Facts about Duchenne muscular dystrophy
      • Signs and Symptoms of Duchenne Muscular Dystrophy
      • Diagnosis of Duchenne Muscular Dystrophy
      • Crucial Genetic Terminology
      • Genetics – Blueprint of Duchenne Muscular Dystrophy
      • How is Duchenne Muscular Dystrophy Inherited?
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Head of Fundraising and Communications

You are here: Home / News / Join our team! / Head of Fundraising and Communications

June 30, 2025 by Lizzie Cox

Role: Head of Fundraising and Communications

Responsible To: CEO

Hours: 22.5 hours per week (0.6 FTE)

Location: Remote, with in-person Team Days four to six times a year, and likely donor meetings in person.

Pay Band: Band 5 [£45,000 to £51,837 per annum FTE]

Key Contacts: Head of Operations & Events, Chief Scientific Officer, Communications Officer, Fundraising Officer, Support Team, Science Communications Officer, Support Executive

Responsible For: Communications Officer, Fundraising Officer

Closing Date: 9am, Monday 21st July 2025

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.
  • 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.

NB: This is not an exhaustive list, the role holder will be asked to carry out additional tasks as
required for the Team’s success. Such tasks will always be reasonable and broadly in line
with current knowledge levels and skill sets.

Person Specification Criteria (essential, except those noted specifically as desirable) 

Education and Qualifications:

  • At least two years’ experience in a management role
  • A qualification in communications or fundraising (Desirable)

Knowledge and Experience:

  • Experience of line managing a team
  • A proven track record of raising funds
  • Experience working to financialtargets
  • Experience building relationships with potential partners which has resulted in financial gain
  • Experience of a CRM system.
  • Experience managing budgets
  • Experience prioritising a varied workload
  • Knowledge of different communication methods
  • Knowledge of current legislation around either fundraising or communications in a charity setting (Desirable)

Skills and Aptitude:

  • An empathy with issues facing people living with Duchenne
  • Ability to communicate effectively, both in writing and verbally.
  • Excellent networking skills with the ability to inspire others
  • Ability to work under pressure and meet realistic deadlines
  • Computer literate with excellent
  • Office or Google Workspace skills
  • Leadership, team building and mentoring skills
  • Demonstrates credibility and gravitas
  • Bringing energy, enthusiasm and drive

To apply for the position of Support Team Lead, please complete our online application form.

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