A.D.D.E.R. have been members of Dystonia Europe since it began, in fact Ginger Butler (one of our founder members) served on the board for several years and nowadays, I (Gill Ainsley A.D.D.E.R. Treasurer and Administrator) am currently the secretary to the board of Dystonia Europe.
Due to the current pandemic Dystonia Europe had to cancel their annual Dystonia Days conference and had to host their General Assembly online using zoom.
Two of us attended from A.D.D.E.R. I was there with my Dystonia Europe hat and another committee member, Thein, attended to represent A.D.D.E.R.
The meeting went really well with 25 participants and no technical problems!
We heard updates from Monika Benson the Executive Director of Dystonia Europe and Adam Kalinowski, the current president. The treasurer presented the budget to us for this year and it was noticeable that plans had to be changed in reaction to the pandemic and as such so did the budget. Dystonia Europe have adapted very well and will continue to provide excellent information and support to its members throughout the year.
A series of webinars are planned as are a series of podcasts. Both with various themes but all aimed at helping and supporting dystonia patients throughout Europe. There are also a series of videos planned called ‘Dystonia Talks’ these are videos of various medical professionals talking about Dystonia and advances in treatment and diagnosis.
Having meetings with the board from my own office is a strange experience, it is good to meet and talk with the board members and to help make decisions etc. but is not as sociable as meeting in person. It is the only way we can meet at the moment but we hope to be able to meet in person again once it is safe.
Please take the time to look at the Dystonia Europe website you will find a great deal of very useful information and links to the webinars and podcasts.
There are also links to the videos taken at previous Dystonia Days.