Dystonia Europe Dday London 2019

Dystonia Europe Dday Conference 


July 2019

Dystonia Europe host a conference annually in various parts of Europe and this year it was held in London, England.

We decided we mustn’t miss the opportunity to attend as it was so close to home.

Three members of the A.D.D.E.R. committee attended, myself (Gill Ainsley), Mel Moore and Maureen Moore.

Maureen and Mel’s expenses were partly funded by A.D.D.E.R. with themselves paying for some of the cost, my expenses were covered by Dystonia Europe and myself, so no cost to A.D.D.E.R. for my place at the conference. We all felt this would be money well spent and I hope you will all agree that it certainly was value for money! 

We arrived at the hotel on the Friday lunch time and the first business was the Dystonia Europe General Assembly. This was a formal meeting to discuss the annual business report for Dystonia Europe and to elect the new/existing members onto the board.

Foto: stephan-roehl.de

During the meeting the new board was elected which included myself as secretary.

I will of course carry on  with my duties for A.D.D.E.R. as treasurer and administrator.

Once the business was concluded we checked into the hotel, freshened up and joined the rest of the delegates for a dinner cruise on the Thames.

We had a great night with lovely food, a beautiful view and a glass of wine or two!

The next day was an early start, 7:30am to help get everything set up. My main role for the day was to demonstrate the MyDystonia app but I was also asked to give out the t-shirts to all who attended the conference and to help generally to get things set up.

Maureen and Mel’s main job was to set up and man the A.D.D.E.R. stand. They spent the whole day giving out A.D.D.E.R. leaflets and answering questions as well as helping me to set up and looking after the MyDystonia app stand while I took comfort breaks.

The presentations during the morning concentrated on Dystonia and Childhood, moving on to Dystonia in adolescents and young adults, then finally in the afternoon dystonia in adulthood was discussed.

The speakers included a mum of a 7 year old girl with dystonia, a speech therapist, an occupational therapist and a very experienced consultant surgeon who does Deep Brain Stimulation surgery on children, Dr Jean-Pierre Lin from Evelina Children’s hospital in London. These were all before lunch and after lunch the speakers included some inspiring young adults talking about their own journey with dystonia and what they have achieved against all odds.

There was also a ‘Roundtable’ of specialists on the platform talking about their own specialism within the treatment of Dystonia and answering many many questions, these included specialists in Neurotoxin, Deep Brain Stimulation, Non-motor symptoms of dystonia, mental health and rehabilitation.

At lunch time we all gathered together with our ‘Jump for Dystonia’ t-shirts on and had a group photo taken by the official photographer Stephan Rohl. 

Foto: stephan-roehl.de

Later in the afternoon the winner of the David Marsden Award  2019 was announced and Professor Maja Relja from Zagreb talked about the Europe wide dystonia survey which you may have taken part in called ‘A survey for change”.

Adam Kalinowski  presented the MyDystonia app and talked about the latest version currently being developed, then the conference was brought to a close by the retiring President, Merete Avery and Monika Benson the executive director. 

Throughout the day there was a BBC crew there filming a documentary about dystonia, I’m sorry I don’t know any more details of that but please keep an eye out for it appearing on TV!

That evening after a quick shower and change Maureen, Mel and I attended the course dinner where Monika and Adam thanked the three retiring board members for all their dedication and hard work.

Foto: stephan-roehl.de

As with the night before, we had a lovely social evening with gorgeous food, great company and a glass of wine or two! 

The final part of the weekends activities was a work shop on the Sunday morning.

We split into teams and worked on the strategy for Dystonia Europe led by a strategy consultant Noemi Ambrus.

Foto: stephan-roehl.de

The three of us enjoyed the session although we did admit it stretched our brains a bit! 

After a quick lunch we left the hotel to return to Newcastle and our families, we were all very tired after such a busy weekend but we also felt we had learned a great deal and felt proud to have taken part in such a well organised event.

Will we attend next year? I certainly hope so!

by Gill Ainsley

A.D.D.E.R. Treasurer and administrator

Dystonia Europe Secretary.

All photographs by Stephan Rohl www.stephan-roehl.de

If you would like to watch videos of any of the presentations please use the following link: 

Or, go to you tube and search for Dystonia Europe, Ddays 2019.