February 18, 2020

Winter Think Tank 2020

Dystonia Europe Winter Think Tank was held in Lund, Sweden 14 February 2020. DE had a Board Meeting the day before, and the Think Tank members joined that evening for dinner. Members of the Think Tank are our Platinum sponsors: Boston Scientific, Ipsen, Medtronic and Merz.

President Adam Kalinowski welcomed all to the Think Tank meeting and Executive Director Monika Benson gave an update on the activities that DE has been involved in during the last year.

DE collaborated with EFNA on the «Brain Life Goal» project, raising awareness of brain diseases. DE supported the project during D-DAYs in London, adding their own hashtag «Dystonia Life Goals».

Another awareness project that DE started last autumn is «Dystonia Talks», which consists of video interviews. Videos have already been published on Dystonia Europe’s You Tube Channel https://www.youtube.com/user/DystoniaEurope/videos  . More videos will be published this year.

Prof Maja Relja, School of Medicine University in Zagreb, Croatia, held a presentation on the preliminary results of her study Dystonia Survey in Europe,  – Mapping Patients With Dystonia.

An update of how DE progress on Social Media was presented. The amount of people reached on facebook keeps growing.  We are very pleased to see how engagements, shares and likes increase continously. It is important that people become more aware to fight stigma, achieve earlier diagnosis and receive treatment. This will help to improve the quality of life for those affected.

Part of the TT meeting was dedicated to discuss how to relaunch the Jump for Dystonia Campaign. There were some very good ideas and you can read more about our plans on page 20. We hope you will join us in this fun activity.

We hope to hold the next Think Tank Meeting in the autumn in Lund, Sweden or online.

Merete Avery
Dystonia Europe