Chief Executive Officer

Chief Executive Officer (Maternity cover) - SUDEP Action

About SUDEP Action

SUDEP Action is the only UK charity focused on stopping preventable epilepsy-related deaths. We have the only epilepsy bereavement service freely available to anyone suddenly bereaved by epilepsy (including SUDEP – Sudden Unexpected Death in Epilepsy, when someone with epilepsy dies and no other cause can be found for their death). By representing the voices of those who have died and those who are bereaved, we aim to learn from their deaths and use research, policy and campaigns to raise awareness and take action that helps save lives. 

With nearly 3-decades experience in supporting the bereaved and fighting to stop epilepsy related deaths – we know the importance of working together to help others. Our supporters and volunteers are our heart – helping us raise awareness, and funds as well as sharing their powerful personal experiences to drive our work forward. 

The Role

With our current CEO going on maternity leave, we’re looking for someone with CEO experience who can efficiently step into this position and keep the work of the charity positively progressing towards achieving our ambitions and goals. 

This is an important time in the charity’s history, with a growing team working hard to meet the increasingly complex needs of epilepsy and epilepsy bereaved communities, so we need an interim CEO who isn’t afraid to get stuck in and can quickly get up and running to play a leading role in increasing our reach, impact and opportunities. 

Across the team, there is a wealth of knowledge and expertise that the right candidate will tap into and nurture as part of their leadership. They will be supported in their role by the Deputy CEO (who heads up our Bereavement Services), a strong Management team and the Board of Trustees. While we’re currently in a good financial position and have a solid income stream from our fantastic Community Fundraisers, we cannot be complacent and need someone financially astute to ensure the charity remains sustainable and is able to continue to grow. 

Contract Type

• Fixed term contract starting in January
• The role will be for approximately 12 months, ideally with some handover time with the current CEO ahead of their maternity leave beginning, and the same on their return.        

Key Responsibilities

• To provide leadership and strategic direction to SUDEP Action.
• To extend and champion our mission and work.
• To inspire and lead staff and management, ensuring a culture of continuous learning, inclusion, and support.
• To deliver a sustainable charity with strong funding and diverse income streams.
• To develop and maintain external relationships and partnerships.
• To positively promote the charity and its activities as widely as possible.

Accountable To

• Chair of the SUDEP Action Board 

What You Will Bring

We’re looking for a senior charity sector leader - a positive communicator who can be clear, decisive and a champion for the charity whilst also showing real empathy for our mission, cause and our vulnerable audiences (especially those bereaved by epilepsy). Dealing on a daily basis with the devastation of preventable epilepsy deaths needs resilience, patience and a fair bit of creative determination – could this be your next challenge? 

At SUDEP Action we are committed to fostering an inclusive environment where all individuals are valued and respected. Our charity recognizes that diverse perspectives strengthen our decision-making and enrich our work. We welcome applications from people of all backgrounds, experiences, and identities and actively encourage those from underrepresented groups to apply. We strive to create a culture where everyone feels empowered to contribute and where differences are celebrated.

How To Apply 

Eastside People is supporting SUDEP Action in the recruitment for this role. Please click here to apply by submitting a CV and a covering letter.

Please use the cover letter (max 2 pages) as an opportunity to add to the information you have shared in your CV and ensure that you cover the following:

Why you are interested in the interim CEO role at SUDEP Action and how the position is a good fit for your skills
Your strategic experience as a senior leader in a not for profit organisation
Key experience/knowledge in relation to the other skills and experience specified in the job description and person specification

If you would like a call to discuss the role in more detail, please contact us via email to arrange a convenient time. Having a call of this kind will not influence the success or otherwise of your application.

We want you to have every opportunity to demonstrate your skills, ability and potential. Please contact us if you require any assistance or adjustment so that we can make the application process work for you.

The closing date for applications is 25th November with online shortlisting interviews taking place the week after. Interviews with SUDEP Action will take place in early to mid December.

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