September 15, 2020

Dystonia UK – Dystonia Awareness

Dystonia UK is dedicated to helping people affected by dystonia in the UK and is spearheading the awareness raising activity this September. We  are so excited to share our plans for a festival themed Dystonia Awareness Month and how you can get involved!

Dystonia Around The World

At the end of July, we launched Dystonia Around The World and invited 100 champions to join us in virtually travelling 25,000 miles from Dystonia UK’s HQ around the world and back, and raising £25,000 to help raise global awareness of dys-tonia.

We wanted this campaign to be as inclusive as possible and so it is not just about how many miles you can run or walk, but also allows everyone to be involved with every 10 minutes of activity you do being the equivalent of 1 mile. One of our champions has taken on the challenge of writing for 1,000 minutes. Another is mixing it up with both walking and drawing to get her miles and minutes in.

“It’s so nice to see that you can log activities other than fitness for a change. LOVE IT, WELL DONE Dystonia UK!!!” – quote from one of our Dystonia Champions taking part in the challenge

The challenge is due to finish around the end of September, and we would love to have you sign-up to become one of our champions. Whether you choose to walk, cycle, paint, draw, cook, bake, dance or craft get involved and together we will take dystonia awareness 25,000 miles around the world. To find out more, and sign up, head to   our dedicated website.

Dystonia Matters Digital

We are rounding off our festival themed Dystonia Awareness Month with our Dystonia Matters Conference taking centerstage! Taking place on the 25th & 26th of September this year, we have gone fully digital with #DMDigital. We were delighted to host some of you at our  annual conference last year, held in London in partnership with Dystonia Europe, and are thrilled to be able to tell you about our plans for 2020.

Spread over 2 days, and 4 sessions, #DMDigital presentations will be a mix of practical advice and shared life experiences from patients as well as specialists with live Q&A’s for each session, plus plenty of networking opportunities. You can read a short overview of the session summaries below and find more information on the event website.

Campaigning for Change: How our work with Neurological Alliances from across the UK is used to magnify the voice of dystonia patients and to raise awareness.

Mental Health Matters: Specialists in the field will have an in-depth conversation about how you can look after your mental health.

The Future of Neurology: Leading clinicians share their thoughts on the future of neurology, including digital innovations.

Know Your Rights: In partnership with Disability Rights UK, we will be sharing practical tools and tips on rights for the dystonia community, including the PIP process.

While we all love getting together in person, the stress of travelling can weigh on people and there’s much to be said for being able to take part from your own home, with your creature comforts around you.

The digital conference format has allowed us the flexibility to be able to host delegates from all across the world and for each delegate to be able to choose between a full conference ticket or if they prefer just to attend a session or two. Each session has a limited capacity so please do ensure you book early to avoid disappointment.

To find out more, and buy your tickets, head to the event website.

Other ways to get involved

We also have plenty of other activities planned, including sharing research updates and stories from people living with dystonia, so keep an eye on our social media channels as @DystoniaUK and sign-up to our mailing list on our website to make sure you don t miss out.

Dayna Ferdinandi
Head of Fundraising and Communications
Dystonia UK