Our Berlin dystonia group “DyD” (Dystonia and You) enthusiastically accepted a suggestion from a fellow group member to take a group trip to Brandenburg and go on an alpaca hike. Fortunately, we found the wonderful alpaca farm in Pausin, about a 1.5 hours drive from Berlin. The farm made a pleasant impression on us and…
Discovering a Missing Piece of the Dystonia Jigsaw: An International Collaboration on Understanding Brain Glucose Activity Patterns in Children and Young People with Dystonia
By Dr Jean-Pierre Lin, Evelina London Children’s Hospital, London, UK The award of the Dystonia Europe David Marsden Prize to Dr Stavros Tsagkaris represents a significant recognition of the importance of our work in investigating brain activity patterns in childhood and adolescent dystonias1, 2 representing a 20-year project to carefully unravel the mechanisms of dystonia…
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 On Saturday 29 June Dr. Tsagkaris was presented with the award by Dystonia Europe Executive Director Monika Benson at…
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…
