March 28, 2020

Dystonia Work during the Pandemic

It seems like only a few weeks ago life was totally normal and the Dystonia Europe Team was in the middle of preparing for our big annual conference D(ystonia)-DAYs 2020 to be held in Dublin next June. Bookings of venue and accommodations were made, speakers were confirmed and social activities being planned when it all of a sudden came to a stop.  We had all heard about the new virus spreading in China back in January but who would have thought that it would spread so rapidly across the world? Soon cities and regions closed and then one country after the other closed as well. We had to face the fact that no one would be able to travel to Dublin and therefore no D-DAYs this year. The health and well-being of our colleagues, members and partners are the most important and the DE Board agreed it would be better to not hold the D-DAYs at all this year. Now we have cancelled all the bookings and we are aiming for the event to take place in Dublin in 2021 instead. We hope that this will be all over by then. As soon as we have the new dates we will let you know.

The Covid-19 pandemic crisis is affecting all levels of society across the globe. Cities, countries, borders have closed down. Healthcare systems are under extreme pressure. Early in the crisis we heard about dystonia patients across Europe not being able to have their Botulinum Toxin Treatment and therefore causing a lot of stress and anxiety.

Member organisations reacted quickly and organised webinars with experts to give advice and support. Dystonia Europe has created a special web-page with important information and links that can be of help and support.

We are in contact with members to follow the developements and we hope treatment will soon be available again.

For the team of Dystonia Euorpe it also means that we are not able to travel to any meetings.  We are therefore keeping close contact via zoom, where we have regular board meetings. This is also the platform where we will hold our Annual General Assembly 2020 for our members. Many of our partners also hold their meetings here. EFNA will be hosting their General Assembly on Zoom as well.

The activities and work of Dystonia Europe will continue as usual but in a slightly different way this year. Since we are not able to meet in Dublin for our annual event we are planning several new digital activities. We will launch a series of Dystonia Webinars where you will learn the latest within treatment and research from dystonia experts. We are working on our new dystonia podcast series. In September it is Dystonia Awareness month where we hope you will join the exciting relaunch of our Jump for dystonia campaign, share our dystonia facts and inspirational quotes.  Together we will make dystonia better known.

But for now it is really about taking one day at a time, one week at a time, listen to the advice of national authorities and do all we can to help in stopping the virus to spread. Be strong during these difficult and unusual times. One day it will come to an end.

Take care and stay healthy!

Monika Benson
Dystonia Europe