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 • meet dystonia patients and their families in the country where the conference is held • meet the dystonia experts face-to-face • learn about the latest information on dystonia treatment and research • record and livestream all the presentations which are then made available on our Youtube channel throughout the year • collect other material such as vlogs, patient testimonies, photos, video interviews • raise awareness of dystonia through various campaigns • add value to the work of our member organisations
Within the Dystonia Europe team we found it very frustrating that none of the above would happen this year and we had to rethink. What can we do instead to follow our objectives and goals and to stay connected with our members?
The place to meet this year is on-line. We have therefore decided to launch the Dystonia Europe Virtual D-DAYs 2020 including a dystonia webinar series and a new dystonia podcast. The good thing with this is that it is not only for a few days but for the remaining months of this year and beginning of 2021. If this proves successful we might continue these activities also after the pandemic.
We are very grateful to Ipsen Pharma and Medtronic, who usually sponsor our face-to-face D-DAYs, for their generous support of these new and exciting online activities for Dystonia Europe.
The webinar series was launched already at the beginning of May with the first session on «Cervical Dystonia Rehabilitation in Times of Difficulty in Having Access to Usual Therapy”, with Dr. Mari-Hélèn Marion from London and Dr. Jean-Pierre Bleton from Paris. The webinar is available at: https://www.youtube.com/user/DystoniaEurope .
The second webinar was held at the end of June with Professor Marjan Jahanshahi and Dr. Francesca Morgante from London. This time it was about «Dystonia and Mental Health – Living Well with Dystonia». This is also available on our Youtube channel.
On 30 September at 17.30 CET our 3rd webinar will take place. This time on «DBS – treatment – all you want to know about deep brain stimulation» with Dr Francesca Morgante and moderated by Dr Fiorella Contarino.
For information on how to join check out our facebook page and website. If you already have questions you can send them to sec@dystonia-europe.org
Our other exciting activity is the launch of our podcast: The Positive Twist. This is a series of 6 30-minute episodes where we will invite patients, carers, experts and hear their stories and advice. The first episode is planned to be launched in September.
Very soon the final programme for the webinar series and the podcast series will be available on our webpage. Make sure to follow us on Facebook for the latest updates.
We are looking forward to an autumn filled with educational and inspirational sessions on-line and we hope you will join us wherever you are.
Monika Benson
Dystonia Europe
