Fundraising event manager jobs in Loughborough, leicestershire

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).

Recruitment Timetable:
Deadline for initial CV interest – Wednesday 20th May
Deadline for applications – Tuesday 26th May
First stage interviews - Monday 8th, Tuesday 9th or Thursday 11th June
Final stage interviews – Friday 26th June