Sometime last year board member Catalina persuaded us to hold our annual General Assembly and Dystonia Day conference in her home town of Timișoara, Romania. After months of careful planning the day to travel finally arrived on Wednesday 29th May. I left home at about 3:30am for the 6 o’clock flight to Schipol, Amsterdam. At…
Dr. Stavros Tsagkaris Receives the David Marsden Award 2024
Our congratulations to Dr. Stavros Tsagkaris, from the Evelina London Children’s Hospital in London, UK and the David Marsden Award 2024 for his paper: Metabolic Patterns in Brain 18F-fluorodeoxyglucose PET Relate to Aetiology in Paediatric Dystonia https://dystonia-europe.org/wp-content/uploads/2024/07/tsagkaris-et-al-brain-656e1e43a6c91253670147.pdf On Saturday 29 June Dr. Tsagkaris was presented with the award by Dystonia Europe Executive Director Monika Benson…
My Dystonia Story – Meet Vidar from Norway
My name is Vidar Bjørkli, I am 64 years old and live in Finnsnes, Troms in Norway. I am married to Berit and have two grown up sons. Before my retirement two years ago I worked most of my life (nearly 40 years) as a journalist in the local newspaper Troms Folkeblad in Finnsnes. In…
Passion in Motion: Supporting Rare Disease Day in Romania
In an effort to bring light and hope into the lives of those affected by rare diseases, an innovative project has taken root in the heart of the Brazilian Jiu-Jitsu (BJJ) community in Romania. Under the motto “Rolling for Rare,” this project was initiated by the Children’s Joy Association for Dystonia together with the Iguana…
Voices from the community – the Dystonia Matters Podcast
In 2020, Dystonia UK launched the Dystonia Matters podcast as a powerful platform to give our community a voice. The podcast series allows us to share the stories of people living with dystonia, whether they’ve been diagnosed themselves, or care for someone with the condition. Our hope is that through telling the tales of our…
