Job pack Community Fundraising Officer

A message from our directors

Dayna Ferdinandi Director of Fundraising

& Communications

Victoria Wareham Director of Operations

& Development

We’re excited that you’re thinking about joining Team Dystonia UK and supporting our mission.

At Dystonia UK, people living with dystonia are at the heart of everything we do. Working closely with our community, we’ve built a deep understanding of what life is really like with dystonia and together, we provide vital support across the UK.

For over 40 years, we’ve been proud to be the only national charity supporting people with dystonia, championing a community that is too often overlooked or forgotten.

You’ll be joining a small but dedicated and passionate team, supported by an incredible group of volunteers and partners. We offer a vibrant, flexible, and collaborative working environment where every team member plays an active part in making a difference.

We hope that through this pack, you’ll feel inspired to apply and join us in helping improve the lives of people living with dystonia.

First established as The Dystonia Society in 1983, today, we are the only UK national charity dedicated to helping people living with dystonia.

We connect the community across the UK at online and in person events, support group meet ups and through our ‘Dystonia Matters’ magazine and podcast. We empower the community providing advice and information through our website, webinars and events. We champion our community through national campaigns and lobbying for improved NHS services and better awareness of the condition. We celebrate our community at every opportunity magnifying their voices and experiences.

Dystonia UK is at the heart of the dystonia community - children and adults with dystonia, carers and clinicians, fundraisers and families, healthcare professionals and our amazing members and supporters, all working side by side.

Who we are

Our mission and work In the UK there are thought to be around 100,000 people living with dystonia, a neurological condition that causes uncontrollable muscle spasms.

Our mission is simple. We exist to give hope and support to everyone living with dystonia and to create UK and worldwide awareness.

We think dystonia matters because:

An estimated 100,000 people in the UK have dystonia. People with dystonia deserve improved access to treatments. There is still no cure for dystonia.

We are here for everyone living with dystonia.

Dignity We treat everyone with kindness and respect, ensuring every person living with dystonia feels seen, heard, and valued.

You-centred We put people at the heart of everything we do, listening to and acting on the needs of those living with dystonia.

Supportive We stand beside everyone with dystonia. We are empathetic and encouraging in our approach.

Transparent We are honest and open about the way we do things and the realities of living with dystonia.

Open-hearted We welcome everyone with warmth and without judgment, creating space for all experiences.

Naturally Reflective We take time to actively listen, evaluate, and grow - ensuring our work remains responsive and relevant.

Inclusive We welcome everyone, no matter your story. Dystonia doesn’t discriminate and neither do we.

Ambitious We are driven to create meaningful change and a better future for everyone living with dystonia.

Our values

We are a small national charity operating across the UK. We work on the phone, online and in person at the very heart of the dystonia community.

Our culture is friendly, flexible, and focused on achieving real impact together. We know that our people are our greatest strength, so we work hard to create a supportive and rewarding environment where everyone can thrive.

We offer: Flexible working - with the opportunity to work remotely and agree a pattern based around our core working hours that suits both you and the organisation. Hybrid working - with access to our central London office, close to the River Thames. Generous holiday allowance - 25 days plus bank holidays (pro rata for part-time staff). Pension scheme - competitive employer contribution. Learning and development - access to training and professional development opportunities. Employee wellbeing support - free, confidential 24/7 helpline offering specialist information and guidance. Collaborative culture - regular opportunities to share feedback and help shape how we work.

Our ways of working

As Community Fundraising Officer, you will play a vital role in growing and strengthening Dystonia UK’s community fundraising activity to ensure we reach and exceed our fundraising targets. You will help bring our fundraising strategy to life by supporting and inspiring individuals, groups, and partners to raise funds and awareness across the UK.

Working closely with the Director of Fundraising & Communications, you will lead on the development of community and challenge events, ensuring every supporter has an outstanding experience from their first contact to their final thank you. You will build meaningful relationships that turn one-time fundraisers into lifetime supporters.

This is a varied and rewarding role where no two days are the same - from coordinating national campaigns and events, to creating engaging digital content and championing supporter stories that celebrate the strength of our community. You will bring creativity, energy, and excellent organisational skills to help ensure Dystonia UK continues to grow its fundraising and impact.

By joining us, you’ll be part of a small, passionate team that’s driving real change for people living with dystonia across the UK.

About the role

Dystonia UK 89 Albert Embankment

London SE1 7TP

www.dystonia.org.uk @DystoniaUK

Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered as a charity in England and Wales (1062595) and in Scotland (SC042127)