Prospectus is proud to be partnering with our client, a small, specialist health charity dedicated to improving the lives of everyone affected by Dravet Syndrome.
Dravet Syndrome is a rare, life-long and life-limiting form of epilepsy that affects approximately one in every 15,000 people in the UK (around 2-4,000 people in total). It is a complex epilepsy syndrome so as well as severe, difficult-to-control seizures, people with Dravet Syndrome live with intellectual disability and a spectrum of associated difficulties including with speech and language, mobility, behaviours, eating and sleep. It is also common to have a co-diagnosis of autism and/or ADHD.
Founded in 2008 by a group of parents seeking support and information, DSUK has grown significantly over the past 17 years. Today, DSUK supports nearly 600 registered families across the UK and reaches over 2000 people in total, including parents and carers, siblings and bereaved families. As an organisation they deliver a range of impactful services aimed at improving the lives of beneficiaries through family support, professional education and medical research.
At a time of continued growth for the charity, and as medical advancements in the field continue (including clinical trials for the first gene therapies in rare epilepsy), DSUK are now looking to recruit a strategic, collaborative new CEO to help shape the next stage of their journey.
As the organisation’s new CEO, you will provide inspiring, values-driven leadership across the organisation, holding overall responsibility for the day-to-day operations and long-term growth. You will work closely with the Board of Trustees to develop and deliver the organisation’s next five-year strategy, steering organisational priorities, strengthening culture and ensuring the charity continues to grow, both in terms of scale and in impact. You will lead a small, dedicated, cross-functional team across family support, fundraising, communications and research, driving collaboration across all teams. You will also lead on impact and quality, embedding a culture of learning and continuous improvement. A key part of your role will involve developing and building strong relationships with a range of stakeholders, including families, professionals, researchers, pharmaceutical companies as well as other charities and funders. You will also represent DSUK at relevant conferences and sector events, both in the UK and occasionally internationally.
This is an exciting opportunity to shape the strategic direction of a small, specialist, growing organisation providing life-changing services. To apply for this role, you will be a confident, collaborative leader with significant senior leadership experience in the charity or not for profit sector (experience of working in a rare disease, health, disability or patient advocacy charity is desirable). You will have demonstrable experience of scaling an organisation, and navigating the complexity that growth brings. You will be a skilled communicator, confident at building relationships across health, care or community sectors. You will be resilient, adaptable and comfortable with the breadth and pace of working as a senior leader within a small charity.
If you are interested in applying for this exciting position, please submit your CV in the first instance. Should your experience be suitable, we will send you the full job description and will arrange for a call to fully brief you on the role.
At Prospectus we invest in your journey as a candidate and are committed to supporting you with your application. We welcome all candidates to apply, regardless of age, sex/gender, disability, race, religion, sexual orientation, marital status or pregnancy/maternity. If you have any disability and require reasonable adjustment/s to any part of the process then please contact Victoria Savva at Prospectus.
Please note, this will be home-based with regular travel across the UK (and occasional international travel). Working hours are Monday to Friday, 09:00–17:30 (however some flexibility for evenings and weekends is required).
Want to challenge the disruptive role of the fossil fuel industry in our politics, society and culture? Culture Unstained is looking for a Campaigner to join our small but impactful team in the UK, at a key moment in the exciting campaign to end fossil fuel sponsorship of culture.
If you’re committed to climate justice and its intersecting struggles including decolonisation and anti-militarisation and inspired by art, culture and creativity with a strong understanding of the politics of the climate crisis and the dynamics of the fossil fuel industry’s ongoing role in driving it - we want to hear from you!
Key Details
- £52,186.09 pro rata, working from home, 3.5 days per week, 18 months fixed-term contract
- Application deadline: end of Sunday 10 May 2026 (midnight, UK time)
- Applicaition process: please visit our website for full application guidance and documents
- Interview dates: w/c 18 May. Interviews are provisionally scheduled to take place on 20 and 21 May.
- Suggested start date (negotiable): w/c 20 July 2026
Employment conditions
Salary: £52,186.09 pro rata (£36,530.26 for 3.5 days).
Location: Working from home, with preference for candidates in the UK.
Hours: 3.5 days per week with occasional evening/weekend work for which time off in lieu will be given. We allow for flexible working but with some core hours.
Duration: 18 month fixed-term role.
Benefits: 10% employer pension contributions; flexible hours; 21 days holiday per year for a 3.5 day per week post (plus bank holidays and Christmas break and your birthday); a caring and learning culture within a non-hierarchical workers cooperative; progressive employment policies including generous paid sick leave, paid carers’ leave and paid family leave. As part of trying to create a more sustainable organisation, we have adopted a shorter working week.
We particularly welcome applications from marginalised groups, especially people of colour and other ethnic minorities, people who identify as LGBTQIA+, Disabled people and those who identify as working class or have done so in the past. If we can offer support with the application process please do get in touch. If you’re excited about this role but your experience doesn’t align fully with the job description, we’d love you to apply anyway. Please contact us if you require any support or adjustments for you to navigate this application process.
About Culture Unstained
Culture Unstained is a campaigns and investigations organisation which primarily works to end fossil fuel sponsorship of culture, undermining the industry’s ‘social licence to operate’. We believe that targeting cultural sponsorship gets to the core of challenging the disruptive role of the fossil fuel industry in our politics, society and culture.
We work to end the social legitimacy and cultural power the fossil free industry currently gains from its involvement in culture and art – most visibly by sponsoring museums, galleries and other arts organisations – in order to bring about a world where cultural organisations draw an ethical red line and proudly reject funding and other ties to those involved in fuelling the climate crisis.
We adopt an intersectional, rather than single-issue approach, to our campaigns and are committed to climate justice. This means joining the dots between fossil fuel sponsorship, militarisation, frontline struggles, decolonisation and restitution campaigns, and Palestinian liberation.
Over the last decade, we have made cultural spaces into some of the most visible battlegrounds for a showdown between people and polluters. We have spearheaded headline-grabbing campaigns that have mobilised new networks of artists, workers and youth activists, and led to major wins, including the end of Shell and Equinor’s partnerships with the Science Museum and BP’s sponsorship of the Royal Opera House and The British Museum’s major exhibitions. In 2025, as a result of our track record of success and ongoing advocacy work, the Museums Association trade body passed a new Code of Ethics which now expects museums to ‘transition away from’ fossil fuel sponsorship.
As a Workers’ Co-operative, we all participate in decisions relating to overarching strategy and working conditions.
About the role
Culture Unstained is looking for a Campaigner to join our small but impactful team in the UK, at a key moment in the exciting campaign to end fossil fuel sponsorship of culture.
You will be working with our existing team on core campaigns such as the Science Museum and The British Museum, as well as contributing to our wider strategic work, which includes:
- Centring and amplifying the demands of impacted communities, in line with our values of climate justice and decolonisation.
- Cultivating opposition to fossil fuel sponsorship in the theatre and live music sectors, building upon our existing campaign against the Royal Bank of Canada’s sponsorship of The Old Vic theatre and instigating our first mobilisations against the recent fossil fuel sponsorship deal of a major music venue.
- Developing a mandate for sector-wide bodies, governments and multilateral organisations to implement bans on fossil fuel sponsorship and advertising, following the precedent of controls on tobacco promotion.
- Achieving consistent parliamentary scrutiny of fossil fuel industry conduct and cultural sponsorship through wider strategic engagement with parliament and culture sector bodies, alongside international advocacy activities.
- Researching and campaigning on fossil fuel industry influence on education and young people, including STEM education programmes and competitions.
- Creating the conditions for a broader cultural shift by engaging with artists and the wider culture sector through advocacy, relationship-building and convening e.g. providing sector-facing guidance on ethical sponsorship and fundraising.
- Strengthening the national and international ‘Fossil Free Culture’ movement, by resourcing and supporting allies across the wider movement.
Once in post, your role will likely mainly focus on two or three of the above areas depending on your skills, experience, interest and fit with the wider team. We would welcome ideas from you at the interview stage relating to any of our areas of work.
Key responsibilities
In this role you will be responsible for developing and implementing the campaign to end UK fossil fuel sponsorship of culture in collaboration with the rest of the team. Our work is often fast-paced and reactive, and key responsibilities include:
- Incorporating climate justice and solidarity principles into our work and creating opportunities to centre people on the front lines of climate justice and intersecting struggles;
- Contributing to research and investigations work to scrutinise fossil fuel companies’ sponsorship deals and business plans;
- Undertaking strategic media and communications work to ensure that fossil fuel sponsorship remains one of the most controversial debates within the culture sector and more widely, including pitching media stories, writing press releases, building relationships with key journalists in the mainstream and arts media, and producing public communications materials such as briefings, blogs and social media content;
- Direct engagement with decision-makers and regulatory bodies through, for example, written consultations, meetings, parliamentary events;
- Building relationships across the culture sector and with networks of NGOs, campaigners and frontline organisations, and working collaboratively with a range of organisations/contacts at significant campaign moments
- As a member of a Workers’ Co-operative you will also participate in decisions relating to overarching strategy and working conditions, as well as maintaining the effective running of the organisation.
About you
We are interested in your skills and potential for the role and realise that these may not come from formal educational qualifications or specific work experience, so please feel free to draw on any experience which has been gained in any informal, unpaid, self-directed or community-based settings to tell us why you’re right for the role. We understand you might not have direct experience of everything listed but if you feel you could be a good fit for our organisation, please do apply.
- You have a demonstrable commitment to climate justice and/or its intersecting struggles including decolonisation, anti-militarisation and broader social justice campaigns.
- You have experience of working as part of, or in solidarity with, communities on the front lines of social and/or environmental justice struggles, and/or groups which are under-represented in the climate justice movement.
- You’re inspired by art, culture and creativity with a strong understanding of the politics of the climate crisis and the dynamics of the fossil fuel industry’s ongoing role in driving it.
- You can develop and implement campaign strategies and/or action-focused research and investigations to bring about real-world change.
- You have strong written and oral communication skills in English, and can write and edit high quality briefings, punchy blogs, effective press releases and impactful social media posts, as well as undertaking and writing-up new research.
- You have the ability to quickly process information and translate it into new campaign strategies, tactics and materials, and some experience of successfully placing stories in the mainstream media, speaking to journalists or being a spokesperson;
- You enjoy working and taking decisions collaboratively and accountably as part of a small team in what is often a fast-paced environment, and are self-motivated with a high level of initiative and the ability to manage your work independently.
- You might (but not necessarily) also have a background, skills or experience in:
- Strategic communications or public affairs;
- Engaging decision makers in achieving policy change;
- Sectors where the fossil fuel industry is seeking to buy influence and social legitimacy such as the culture sector (live music, theatre, museums etc), science or STEM education.
- Experience of submitting successful funding applications and managing organisational finances.
Culture Unstained is a research, engagement and campaigning organisation which aims to end fossil fuel sponsorship of culture.
The client requests no contact from agencies or media sales.