April 5, 2020

UK – Dystonia Society- Reach Out, Reach All

The Reach Out, Reach All project aims to bring the dystonia community together, through film, animation, podcasts and webinars. Dystonia can be an isolating condition. It can be scary not knowing what the diagnosis means, not only for yourself but also how it might affect your friends and family. Although the community is large, individuals can be geographically dispersed which can leave people feeling isolated, alone and unsure.

Reach Out, Reach All was created by Dystonia UK to not only speak to our current members and supporters but to the whole of the dystonia community, the people who feel alone and do not know of anyone else with the condition, those who may not want to go to a support group or may not have one within easy travelling distance. Through this project we aim to tackle this social isolation as well as combat the lack of knowledge around the condition in some parts of the medical community and the general public. These videos, podcasts and animations will be readily available to be shared all over the UK which will not only allow easier access to leading medical professionals in the field but also to other people living with the condition, whose personal stories and journeys will help inform and engage our entire community.

Last year, we partnered with the Aviva Community Fund and used their platform to crowdfund the seed funding for this project. With the amazing support from you and the rest of the dystonia community, in just 4 weeks we raised over £5,000 online and a further £5,000 offline, and even had more funding pledged in the following weeks. We are so incredibly grateful and in awe of the way the community rallied around this project, demonstrating just how needed it is.

We had some amazing feedback during this time, including:


“Having seen how invaluable this information would be for everyone from before diagnosis and throughout their journey, this project absolutely deserves to be funded, you have my support!”

“This is a brilliant initiative that will support thousands of people across the UK. I’m really happy to add my support alongside so many others.”

The crowdfunding was only the start of a multi-faceted, multi-phased project that will continue to grow and meet the needs of our community. The current funding will be used to make the first of 4 videos. This video will answer the question “What is dystonia?” to help increase the general understanding of the condition. This will be followed by another 3 videos, the themes of which will be chosen by a panel of our supporters. We will be launching these during Dystonia Awareness Month in September and cannot wait to see all the effort, energy and enthusiasm behind this idea come to life.

To help us develop the project further, we are also discussing opportunities to be involved in funding the next stages with charitable trusts and foundations as well as our medical advisors, corporate partners, and pharmaceutical partnerships. We believe that this, along with your continued support, will help drive this project forward and guide our way in the future.

We realise this has the potential to have a considerable positive impact on the dystonia community and so are thrilled to have the first phase funded and backed by our supporters. We will be updating you regularly on the progress of the project and look forward to sharing these developments with you.

In this time of uncertainty and social isolation, this project is vitally important, the next phase in the project “Dystonia Around the World” an awareness and fundraising campaign, where with the help of our supporters we will send Dystonia around the world from our London office and back again will be launching in the next month, check out our website for more details and how you can be involved www.dystonia.org.uk

Dayna Ferdinandi
Head of Fundraising and Communications
Dystonia UK