Beat Dystonia

06/06/2026

Modern, steadily improving genetic tests are increasingly being used as diagnostic tools in . There are a number of well-described genetic forms of , but these are generally rare. Dystonia can also be a prominent symptom that is combined with other disease signs and symptoms within a large number of neurological syndromes, many of which have a genetic cause. In his presentation, Prof Andreas Puschmann of Lund University and Skåne University Hospital is describing the different known genetic forms of dystonia and explain when genetic testing can help to obtain a correct diagnosis.

Watch the conference livestream on the Dystonia Europe YouTube channel at https://www.youtube.com/watch?v=n-nM5G4Ygm4

06/05/2026

Don’t forget your neural pathways! Positive thinking can physically change how your brain processes the world around you.

06/02/2026

"Resilience is not something you are born with, it's something you choose every day. This is something that connects us as a community."
Salvatore Caruso, Board Member of Associazione per la Ricerca sulla Distonia (ARD) and Dystonia Europe, could sadly not be here with us in person today, but shared an incredibly powerful video testimony with us. How we wish you could have been here to feel the impact your words had on the people here, Salvatore, and no doubt on those watching from home too.
If you missed Salvatore's presentation you will be able to catch it soon on our YouTube channel. For now you can tune in there to watch the rest of our speakers live: https://www.youtube.com/watch?v=n-nM5G4Ygm4

06/02/2026

Our conference begins! We are live from Malmo, Sweden, via the Dystonia Europe YouTube channel. Watch the days events, featuring:

🔸 Salvatore Caruso (Person living with , Board Member of Associazione per la Ricerca sulla Distonia (ARD) and Dystonia Europe)
🔸 Prof dr Marina de Koning-Tijssen (Expertise Centre Movement Disorders,
Dep. of Neurology, University Groningen, the Netherlands)
🔸 Dr. Jonathan Ellenbogen (Consultant Neurosurgeon, Honorary Clinical Senior Lecturer, Alder Hey Children’s Hospital, Royal Manchester Children’s Hospital & Salford Royal Hospital)
🔸 Prof Bo Biering-Sørensen (Director, Clinical Associate Professor, Senior Consultant, Neurological Department, Copenhagen University Hospital), Heike Unger (Physiotherapist)
🔸 Prof Andreas Puschmann (Professor in neurology, Lund University, Neurologist, Skåne University Hospital) and Prof Chi Wang Ip (Deputy Director, Department of Neurology and Professor of Translational Neurology, University Hospital Wuerzburg)

👉️ Watch live now at https://www.youtube.com/watch?v=n-nM5G4Ygm4

Huge thanks to Ipsen and Merz Therapeutics, who have made this important day possible 🧡

05/31/2026

https://bodydiaries.beehiiv.com/p/his-hands-could-read-electricity-until-one-dive-they-went-silent?utm_source=bodydiaries.beehiiv.com&utm_medium=newsletter&utm_campaign=his-hands-could-read-electricity-until-one-dive-they-went-silent&_bhlid=7941afaddf82b0d3643a0157080f3cd01e6934ae

Even if this doesn’t apply to movement disorders RIGHT NOW, this is a wonderful piece based on human experience and then segues into fascinating studies about neural pathways and nerve damage. And needing to know your TRUE B12 levels for neurological health! You HAVE to ask your doctor about it to get the true values of your blood test results. Not just what is considered “normal”.

For thirty years, Ray's hands were his instruments. Eighty feet underwater, in zero visibility, welding pipeline seams by feel alone — his fingers knew metal temperature, weld pool texture, the exact vibration of a bead pulling right. Then the tingling started. And the hands that had never lied to...

05/31/2026

Still chugging along…plenty of years since my second Deep Brain Stimulation surgery to “fix” frayed wires. Lucky me. Still practicing mindfulness, meditation and physical therapy. Wholly committed to helping others with movement disorders AND looking forward to the International Dystonia Convention in Seville, Spain in 2027. My foundation will once again be providing financial support for interested researchers and doctors, so they can attend. More information to come on this!

Surround yourself with positive and loving people at all cost!❤️

05/20/2026

Take a moment to read below.

05/20/2026

We are delighted to announce that Mr Jonathan Ellenbogen, a Consultant Neurosurgeon working between Alder Hey Children’s Hospital, Liverpool, Royal Manchester Children’s Hospital and Salford Royal Hospital, Manchester, will be among the speakers at 2026. Mr Ellenbogen is one of the few neurosurgeons in the UK who has a Deep Brain Stimulation (DBS) practice for movement disorders in both children and adults.
He will discuss 'Understanding DBS in Dystonia: Current Uses and Future Innovations.'

Dystonia Day takes place in Malmö, Sweden on Saturday, May 30 and everyone is welcome! Register to attend at https://dystonia-europe.org/2026/03/dystonia-day-2026-in-malmo-sweden/

05/20/2026

Looking to meet others with in a relaxed and welcoming setting?

Our Dystonia UK support group meet ups are a chance to chat, share experiences, and connect with people who understand what living with dystonia can be like.

Upcoming meet ups:

-Edinburgh informal meet up with our North East group coordinators: 23rd May, 12pm, Toby Carvery Edinburgh West

-Lancashire & Fylde: 28th May, 2-4pm, Fairhaven Lake Café, Lytham St Annes

-North East: 12th June, 12pm, Toby Carvery, Newcastle upon Tyne

-East Yorkshire: 26th June, 2-4pm, Morrisons Community room, Bridlington

-Lancashire & Fylde: 25th June, 2-4pm, Fairhaven Pub, Lytham St Annes

To book your spot please email [email protected], and to find out more, visit www.dystonia.org.uk/your-local-support-group.

05/20/2026

🚀 Today we've launched the My Neuro Survey Data Tool!

The tool brings together key findings from My Neuro Survey and NHS waiting times data to show where neurological care is working, where it is falling short and where action can make a real difference.

Your experiences matter. By turning real-life experiences into evidence for change, we can help to put the realities of the neurological community at the centre of efforts to improve care.

Use the new My Neuro Survey data tool to explore neuro care in your area.

https://bit.ly/4tVHzOC