I know dystonia well. Not from hearsay, nor from medical readings: I know it on my skin, in my muscles, in my nerves, in my voice, in my daily thoughts. Oromandibular dystonia is my traveling companion—often uncomfortable, always present. But it has never managed, and never will manage, to define who I am. My…
ERN-RND Annual Meeting in Tutzing – Working Together for Better Care
On the last Sunday of October, participants of the European Reference Network for Rare Neurological Diseases (ERN-RND) gathered in Tutzing for the network’s 9th Annual Meeting. Prof. Holm Graessner, network coordinator, welcomed everyone and opened the meeting with an overview of the network’s activities. The ERN-RND team then shared updates on current projects. Carola presented focused initiatives…
Dystonia Europe Board Visit Health House in Leuven for DBS Select Tour
When the Dystonia Europe board met in Leuven in October we were lucky enough to be invited to a tour of the DBS (Deep Brain Stimulation) Select facility which is currently on the outskirts of Leuven. I wasn’t sure what to expect but as I am currently considering DBS for myself I was keen to…
DMA Winner 2025, Dr. Ahmet Kaymak Receives the David Marsden Award
Our congratulations to Dr. Ahmet Kaymak, from the BioRobotics Institute of Scuola Superiore Sant’Anna in Italy who has been selected as winner of the David Marsden Award 2025 for his paper: Spiking Patterns in the Globus Pallidus Highlight Convergent Neural Dynamics across Diverse Genetic Dystonia Syndromes Edwige Ponseel, President of Dystonia Europe said “The Dystonia Europe patient…
Meet Becky Johnson – My Dystonia Story
The Positive Twist has profoundly uplifted me and infused me with the resilience to continue my journey. I’m sincerely grateful for the work you’re doing. In 1997, as a passionate college swimmer, I faced the heartbreaking decision to abandon my senior year due to a debilitating condition that caused my neck to involuntarily pull to…
