Vidar Björkli, from Norway
“Dystonia Europe rocks!” It was a slogan that President Gill Ainsley was delighted to embrace.
The city of Malmö took centre stage for Dystonia Europe during the last weekend of May, hosting the organisation’s General Assembly on Friday, 29 May, followed by Dystonia Day on Saturday, 30 May.
Twenty-seven participants from twelve different countries gathered in the beautiful southern Swedish city to take part in the two events.
It was during the General Assembly that Gill Ainsley from Newcastle, who became President in January following France’s Edwige Ponsel, highlighted the phrase “Dystonia Europe rocks!” One of the organisation’s sixteen member associations had used this memorable compliment in the closing comments of last year’s member survey.
Gill presented the survey results, which focused on what Dystonia Europe should prioritise in the years ahead. Members expressed a strong desire for greater support for the dystonia community, increased encouragement of research, and improved sharing of knowledge, projects and expertise across member organisations.
The gathering in Malmö proved that the slogan is well deserved. Dystonia Europe is a dynamic organisation, full of energy and forward-thinking initiatives.
For Dystonia Day, the organisation had invited several of Europe’s leading experts to provide updates on the latest developments in dystonia diagnosis and treatment. Saturday’s programme featured six scientific presentations covering current research and clinical practice.
At the end of the day, CEO Monika Benson summed up the experience:
“It has been a truly educational day. We have become better informed and better educated as patients.”
The General Assembly also featured a presentation by the Norwegian Dystonia Association. Vidar Bjørkli introduced the association’s structured peer-support training programme, which generated considerable interest and lively discussion. It became clear that Norway is among the few countries with such a well-organised system for training peer supporters.
Elizabeth Cunningham from Ireland presented plans for this year’s Dystonia Awareness Month campaign in September. The theme will be “More Than Dystonia.”
Tedy Grbec from Slovenia introduced the idea of establishing a Global Awareness Day for dystonia—a worldwide day of awareness. The proposal was warmly received, although it will require further discussion and planning.
The weekend concluded with a guided tour of Malmö by bus, giving participants the opportunity to learn about the city’s rich history. In the modern waterfront district of Västra Hamnen, the group stopped to photograph Malmö’s iconic landmark, the Turning Torso, the striking 54-storey residential tower designed by Santiago Calatrava. From there, participants also enjoyed views of the Öresund Bridge connecting Sweden and Denmark.
The excursion ended at the Viking village of Foteviken, about 20 kilometres south of Malmö, where participants enjoyed a guided tour followed by a delicious dinner—a fitting conclusion to an inspiring and memorable weekend.
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Thank you to Vidar Björkli from Norsk Dystoniforening (the Norwegian Dystonia Association) for sharing this article.
