Below is a diary excerpt from Dystonia Europe’s President, Gill Ainsley, written following the 2026 General Assembly and Dystonia Day in Malmö, Sweden:
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Well, here I go again, off on my travels. It doesn’t seem like long since the last time I met with the Dystonia Europe Board, but it was a few months ago in Dublin, Ireland, when we met with our sponsors for a Think Tank.
This time we were meeting in Malmö, Sweden. For me this meant an early flight from Newcastle, UK so I left home around 03:15 feeling quite fresh and excited to see everyone.
The first flight was uneventful, and I landed in Schiphol on time. I didn’t have much time to spare before my next flight and just made it to the gate in time. I did have to register with the new border patrol system where a machine took my photograph, saved my fingerprints and scanned my passport. Then went to the border control where a machine took my photograph, saved my fingerprints and scanned my passport. No, I haven’t mistakenly written the same thing twice, it did really happen twice! However, I would rather we all had secure border controls to make sure everyone is kept safe, and once I had done that twice, then after that only need to prove who I am once at each border.
The next flight to Copenhagen was also uneventful and landed just a little later than planned. As I was getting off the flight, I got a text message from KLM saying one of my bags had not made it onto the flight to Copenhagen and I should report to Baggage Services. My heart sank, I had a small suitcase with my clothes and a roll up banner and stand, I just hoped that my suitcase had made it through! While it was nice to have the roll up banner, I really needed my clothes! Luckily my suitcase had indeed made it and I left the airport with the promise from KLM that the banner would be delivered the next morning.
Next step was the train to Malmö which in the past has always left from platform 1. So, I confidently got my train ticket from one of the machines and made my way to platform 1 to find it closed for refurbishment! A member of staff soon pointed me in the right direction, and I got to the platform with 5 minutes to spare. Around 20 minutes later I was in Malmö.
Monika had told us that the hotel was just a short walk from the station so using the maps on my phone I set of dragging my suitcase along behind me. What Monika had not mentioned was that the route was almost all cobble stones! It was hard work pulling a suitcase across such a bumpy surface added to that I came out of the wrong station exit so it took me around 25 minutes to get to the hotel.
By this time most of the board were already there and had eaten lunch and were about to start the first meeting. Of course, they had saved some lunch for me which I enjoyed as I had not eaten since about 4am when I had a croissant at the airport before I left Newcastle.
It was lovely to see everyone, apart from Catalina who was due to arrive later in the afternoon and Salvatore who was too ill to travel. We had a good meeting sorting out the fine details of the next few days and some other business that needed to be done.
Catalina arrived almost at the end of the meeting and then our lovely team was almost complete because as I said the lovely Salvatore was ill and could not travel, he was very disappointed. We were all upset to hear he was ill and sent him our love and get well wishes.
Salvatore was due to be the first presenter for the Dystonia Day conference talking about Living with Dystonia, he did say that if he felt well enough, he would record his talk and send it to us.
Then we could all check in to the hotel and go to our rooms for a short rest before meeting for dinner later that evening. By then Elizabeth, our lovely Communications Consultant had arrived and she joined us for dinner.
We had all traveled various distances over various times and once dinner was over we headed back to the hotel for a good night’s sleep.
The next day we spent the morning getting ready for the General Assembly and to welcome all our friends from our member organisations. The General Assembly went well with the business section first followed by an informal section with presentations from Mats and Catalina, Vidar from Norway, Myself and, last but not least, Tedy from Slovenia.
Then just time to freshen up and meet again for dinner, yet another lovely meal just a short walk from the hotel. Petra from Merz had arrived by this time and she joined us.
Saturday morning, we were all ready for the Dystonia Day conference which started with Salvatore’s video. Yes, he had got himself up and dressed so he could record his talk. I have to say before I say any more about the conference that his video had the greatest impact on me and many others who were there. He is so insightful and intelligent the things he said resonated with us all and brought many of us to tears, me included. I can’t do his video justice in this article and strongly advise you that if you weren’t there, please take the time to watch his video on our YouTube channel here.
Of course, the various experts who gave presentations were also excellent and very interesting, with talks ranging from new technologies to new Dystonia classifications to an app for physio to selecting the correct muscles for injections. We are always very grateful to our speakers who give up their precious spare time to come and share their knowledge and expertise with us all. I was going to try to summarise their presentations in this article, but like Salvatore’s video it would be much better for you to watch the videos on our YouTube channel if you weren’t there on the day or watching the live stream.
More of our sponsor reps had joined us for the day, Petra was joined by Christine also from Merz and Susanna from Ipsen was able to join us too.
When the conference was over, we did a quick tidy up then rushed up to our rooms to freshen up again ready for the evening social event. This year we had a bus tour around Malmö which was interesting and it was especially good to see the twisted building which Elizabeth had used on our material for the conference. Such an appropriate image for dystonia patients! We then headed off to a Viking Village just outside of the city. I must admit I dozed off on the bus journey there I was so tired!
Vikings Per and Lars met us and gave us a guided tour around the village of very simple wooden homes with no luxuries at all! I could imagine my grandchildren would have been horrified as there was no WIFI- hahaha. We also had a go at archery and axe throwing. Catalina’s husband Marius was particularly good at the axe throwing, I think she will need a target in her garden when she gets home!
We then had a lovely meal there and Mats and Kenneth entertained us with a sing a long and a quiz based on music.
We got the bus back to the hotel where it was time to say goodbye to some of our friends.
The next morning, we finished tidying the conference room and packed the things away ready to take back home and of course say good bye to the rest of our friends.
The Dystonia Europe Board and Staff are a great team of people, I love working with every one of them, we all get along so well and work together very efficiently. Elizabeth our communications consultant fits right in with us and works with us really well. She has not worked with us for long but very quickly understood what it is we need and she has great ideas for marketing and communications.
When we meet our sponsors, we are always genuinely pleased to see them, they are so warm and friendly and they seem as pleased to see us as we are to see them. The same can be said for our medical advisors and friends.
All of this is made even better when we can meet our friends from our member organisations, some of whom I have known now for a few years and it is like meeting old friends when we see each other. I met quite a few new faces this time and I hope I see them again at our next conference in two years time.
I feel very privileged to be the President of Dystonia Europe and have the pleasure of working and having fun with you all.
By the way, the roll up banner and stand was delivered 5 minutes before the General Assembly!
Gill Ainsley
Dystonia Europe President
