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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).

Bowel Cancer UK is the UK’s leading bowel cancer charity. We’re determined to save lives and improve the quality of life of everyone affected by bowel cancer. We support and fund targeted research, provide expert information and support to patients and their families, educate the public and professionals about the disease and campaign for early diagnosis and access to best treatment and care.

We currently have employees working across four nations in England, Wales, Scotland and Northern Ireland. Thanks to the generosity of our community, we’re in a privileged position to be able to deliver our ambitious new strategy, On a Mission. There are huge challenges facing bowel cancer patients across the UK and our community needs us now more than ever. We’re building a strong and united team to bring us closer to a world where nobody dies of bowel cancer.

Job Summary

This role forms a key part of a new Strategy & Insight Team at Bowel Cancer UK, which seeks to build core capabilities to enable us to be as effective as we can be for people affected by bowel cancer. The Audience Insight Specialist will be an internal leader, building our capability to understand our core audiences and the people we need to reach to achieve our strategic goals. You will support a cultural shift in how the charity takes an audience-led approach to planning, decision-making, and communications, as our CRM, data infrastructure, and Strategy & Insight functions continue to develop. Making best use of internal and external sources, you will distil data into meaningful insight, tailored to different audiences. You will support a consistent approach to audiences across the organisation, while flexing to meet the needs of different teams, ensuring that any understanding of audience is rooted in evidence.

Safeguarding

Safeguarding is everyone's responsibility and at Bowel Cancer UK we are committed to safeguarding children, young people and vulnerable adults and we expect all staff and volunteers to share this commitment.

Successful candidates may be subject to either a satisfactory basic, standard or enhanced DBS check from the Disclosure and Barring Service (DBS) dependent upon the role.

The role

 We are seeking an experienced Manager of Philanthropic Giving with a strong track record in securing major gifts. The ideal candidate will excel at building trusted, long-term relationships with donors and feel confident leading conversations that result in significant philanthropic support. This role will also contribute to the development and delivery of a trusts and foundations strategy, helping to grow and strengthen our portfolio.

Working closely with the CEO, senior leadership and trustees, you will develop compelling funding propositions, steward donors and funders through excellent reporting and engagement, and represent myaware at meetings, events and networking opportunities. You will also maintain accurate records through our CRM system, track performance against targets, and contribute to income planning and reporting. This is a strategic and hands-on role with real impact for people affected by myasthenia.

The Manager of Philanthropic Giving will be predominantly home based within the UK (with occasional working and meetings at Derby HQ) and will work in co-operation with the fundraising team and all myaware colleagues to deliver agreed fundraising targets and campaigns. Own transport is essential for this role as occasional travel throughout the UK will be required to attend donor meetings, events and networking opportunities, as well as the ability to travel to the Derby office. There may be the need to occasionally work during weekends and evenings and therefore there is a need to work flexibly when required.

Who We Are Looking For

We are looking for an experienced and motivated fundraising professional with a strong track record in major donor fundraising along with experience in Trusts and Foundations fundraising. You will have experience in personal communication in asking for high level funds, and experience of stewarding high net worth individuals to maintain high levels of engagement over a significant period. You will have experience of Trusts and Foundations fundraising including pipeline management and stewardship, writing compelling funding applications and impact reports.

You will be a strategic thinker with excellent interpersonal, research and organisational skills, confident managing a complex pipeline and working collaboratively across teams. You will be comfortable working independently, using CRM systems, and engaging senior stakeholders, including trustees and high-level donors. Most importantly, you will share myaware’s values, demonstrate empathy with our cause, and be committed to making a meaningful difference through philanthropy.

If this sounds like you, we would love to hear from you.

Who are we?

Myaware is the only charity in the UK dedicated solely to the care and support of people affected by myasthenia. 

We are working hard to raise awareness of myasthenia, as it is a little-known condition. We provide support for people with myasthenia and their families, whilst offering advice and tips for living with the condition. 

We also fund the research that brings us closer to finding a cure as well as funding specialists nurses and advisors. 

Members of myaware have full access to a wide range of support services and events including our specialist benefits and welfare advisor. 

Myaware supports people with myasthenia and their families.  We campaign for better medical services for people with myasthenia and work to inform medical professionals. 

The myasthenias are a group of neuromuscular conditions. They are rare but also manageable and can affect anyone, regardless of age, gender or nationality. Myasthenia gravis, ocular myasthenia and Lambert-Eaton myasthenic syndrome are autoimmune conditions whereas congenital myasthenic syndrome is caused by an inherited genetic fault. It is thought that there are approximately 20,000 people currently living with myasthenia in the UK. 

Benefits

• Generous holiday allowance
• Perkbox account (global benefits and rewards platform)
• Group Life Assurance after 6 months of service 
• NEST workplace pension scheme
• Free inhouse staff benefits and welfare advice 
• Investment in your personal and professional development
• Annual salary review

Application instructions

Candidates should submit their CV and tailored covering letter by: 11:30pm on Monday 25th May 2026.

Provisional interview date will be week commencing: 01.06.2026

Interviews will be held over Microsoft Teams.

Applications submitted without a tailored cover letter will not be considered.

This post, due to its nature, duties and responsibilities, will be subject to an enhanced check by the DBS. This is funded by Myaware.

This organisation supports anonymous recruitment. That means hiding your personal identifying information, removing bias from the hiring process.

The client requests no contact from agencies or media sales.

Bowel Cancer UK is the UK’s leading bowel cancer charity. We’re determined to save lives and improve the quality of life of everyone affected by bowel cancer. We support and fund targeted research, provide expert information and support to patients and their families, educate the public and professionals about the disease and campaign for early diagnosis and access to best treatment and care.

We currently have employees working across four nations in England, Wales, Scotland and Northern Ireland. Thanks to the generosity of our community, we’re in a privileged position to be able to deliver our ambitious new strategy, On a Mission. There are huge challenges facing bowel cancer patients across the UK and our community needs us now more than ever. We’re building a strong and united team to bring us closer to a world where nobody dies of bowel cancer.

Job Summary

As the Senior Public Affairs and Campaigns Officer, and with the support of the Senior Public Affairs and Campaigns Manager you will be responsible for the development, implementation and monitoring of public affairs and campaigns activity in order to achieve real change through influencing policy and legislation on health services which impact the lives of people affected by bowel cancer in England, with a particular focus on Westminster.

Safeguarding

Safeguarding is everyone's responsibility and at Bowel Cancer UK we are committed to safeguarding children, young people and vulnerable adults and we expect all staff and volunteers to share this commitment.

Successful candidates may be subject to either a satisfactory basic, standard or enhanced DBS check from the Disclosure and Barring Service (DBS) dependent upon the role.