Our Director of Operations and Development, Victoria, shares how we’re growing support networks for our community.

A legacy of support 

Support groups have been at the heart of our charity since the very beginning. Over 40 years ago, in 1983, a small group of people living with dystonia came together to create a group for peer-to-peer support. From that moment, our organisation was built on the principle that no one should have to face dystonia alone. As we grew, so did our network of support groups, reaching communities across the UK and welcoming thousands of people through their doors.

Powered by volunteers 

These groups have thrived thanks to the dedication of our incredible volunteers – many of whom have a personal connection to dystonia. With our support, they have organised a wide range of meetups, from peer support sessions and professional talks, to visits to botanical gardens and festive carol concerts. Their creativity and commitment have made these groups a vital source of connection and encouragement.

Embracing digital support 

As the digital world evolved, we recognised the need to expand our support beyond in-person meetings. We introduced online support groups through Facebook, mirroring our face-to-face offering with dedicated groups for Scotland, Wales, Northern Ireland, and each county in England, as well as specialised groups including our Parents and Carers of Children and Young People group.

Challenges during the pandemic 

Balancing in-person and digital support has always been a challenge, and this was brought into sharp focus during the pandemic when our face-to-face groups were forced to pause. This had a significant impact on our network, with fewer people using these services in the years that followed.

Renewed growth and investment 

However, in more recent times, we have made a renewed investment in bringing people together and we are seeing encouraging signs of growth again. Our Dystonia Matters Live 2023 event brought together over 200 attendees from across the UK – and even from the USA. Many of our local groups have restarted their meetings, and we have recently expanded our staff team to help grow our volunteer network and strengthen our support group offering.

We know that many of you have shared your experiences, hopes and concerns with us, and we want you to know that we are listening.

Looking ahead 

As we look to the future, we remain committed to ensuring that everyone affected by dystonia can find the support and connection they need in a way that works for them. We understand the challenges faced by those affected by this condition, and we are still dedicated to ensuring that no one has to face them alone.

Planning for the future 

We are currently developing a strategy to strengthen our support network across the UK. This means carefully balancing the needs of our community with the resources available to us, while also embracing the opportunities and challenges that the modern world and digital advancements present. These decisions take time as we want to ensure that any plans we make are sustainable and truly beneficial for those who rely on our services.

Shaped by your voices 

Your voices are shaping the future of our charity, and our goal is to build a support system that meets the diverse needs of our community, both now and in the years to come.

Strengthening our services will not happen overnight, but we are moving forward with determination and optimism. Together, we are building a stronger, more connected, and more resilient support network for everyone affected by dystonia.

Find out more about our support groups.

Published: 1st August 2025