Stephen Batey from Newcastle, UK experienced his first symptoms of dystonia as a seven year old. It started in his right foot and eventually spread to his back, neck, and upper limbs. Stephen was connected with a children’s neurologist who gave him the diagnosis DYT1 positive primary torsion dystonia. Stephen was started on oral medication…
Denmark – Members Meeting Faroe Islands 2020
In September 2020 we had the members’ meeting of the Faroe Islands. The meeting was held at Hafnia Hotel in the middle of Torshavn. We ended up being a little group of members at the meeting, Covid-19 and the fear of participating in social groups had its impact. But it still was a very nice…
Dystonia UK – Dystonia Awareness
Dystonia UK is dedicated to helping people affected by dystonia in the UK and is spearheading the awareness raising activity this September. We are so excited to share our plans for a festival themed Dystonia Awareness Month and how you can get involved! Dystonia Around The World At the end of July, we launched Dystonia…
Launch of Dystonia Europe Virtual D-DAYs 2020: the Dystonia Webinar Series & the Podcast the Positive Twist
Our most important event and activity every year, our annual meeting the D-DAYs Conference 2020, was cancelled due to the Covid-19 pandemic. Very early we realized this would greatly affect the work of Dystonia Europe. With no D-DAYs we would not: • meet our members and connect with them and learn about their national activities •…
From an Island Holiday Jump to a Jump for Dystonia Campaign
In 2015 Dystonia Europe rolled out its Jump for Dys-tonia Campaign for the first time with the possibility to win a skydive jump. The campaign circulated around the world and many thousands of jump photos were submitted and four skydive winners selected. For this year’s Dystonia Awareness Month we are very excited to relaunch the…
