Dystonia Europe board members and staff met in Dublin, Ireland, early February 2026.
This was a nice easy journey for me, only one short flight from my home town Newcastle, England, to Dublin.Once in Dublin airport I bought a 3 day ticket for the local bus service then met Merete and Catalina to travel together to the hotel.
The bus was easy to find and it dropped us off right across the road from our hotel, Skylon, Dublin. The hotel was on the outskirts of the city near the big sports stadium/conference centre Croke Park.
We arrived around midday and as our rooms were not quite ready we had a lovely lunch in the hotel restaurant. Merete and I enjoyed fresh mussels and Catalina had a sandwich, but when the mussels arrived she said she would have liked the same but in Romania ‘mussels’ means meat! She thought we had ordered a plate full of meat ha ha!
Once our rooms were ready we got checked in and had a short rest before meeting everyone for dinner in the hotel restaurant. It is always lovely to see all my Dystonia Europe friends in person and of course this was no exception, there was lots of chatter while we caught up with each other’s news and enjoyed our meal. Petra from Merz also joined us for dinner as did Elizabeth Cunningham (our digital/communications expert) and it was lovely to see them both too. Before we said good night we confirmed the meeting time for the Think Tank the next morning. We have two Think Tanks each year, one in person and one on Zoom. These meetings are with our sponsors where we can update them on the projects we are working on and can ask for their help and advice. Without our sponsors we would not be able to continue with all the important projects we are running.
We did a really interesting brainstorming session where we came up with various topics we should concentrate on, those being for the Dystonia Patient Community – Language, Collaboration and Communication. For the Patient Organisations – Awareness, Research and Support. I am sure you agree we came up with the most important things for each group.
That night (Friday) we got the bus into the city centre where Monika had booked a large table for us all to have dinner. Being a Friday night in Dublin everywhere was very busy and noisy but fun. In the restaurant we were sitting next to a group of young men on a stag weekend, how did we know they are on a stag weekend? The stag was wearing a bikini top and shorts! They were noisy but were having fun and didn’t cause anyone else a problem. I did spot Sissel having her photograph taken with the stag before they left ha ha!
The Dystonia Europe Board at dinner Friday night
After a lovely meal some board members decided to stay for one more drink and the rest of us left to get the bus back. The bus arrived soon after we got to the bus stop and I asked the driver to tell us when we were back at the hotel. It seemed to take a long time to get back then someone spotted the hotel so we all stood up to get off. The driver said ‘Oh I am sorry I forgot to let you know and we have gone past the hotel now!’, fortunately he was joking, phew!
The next morning we met for our Board Meeting, sadly Merete had taken poorly during the night and couldn’t attend the meeting. We made sure she had some medication and plenty to drink and then got on with the meeting.
We always have such a lot to discuss at our board meetings and had planned to take the whole day to cover the agenda.
Sissel and Jukka took us through our latest financial report and then we discussed the brainstorming session we had during the Think Tank and came up with ways of achieving the priorities we identified. Elizabeth took us through our communication strategy and we discussed upcoming webinars and podcasts (watch out for these!). We also discussed the physio hub and training courses plus some research projects.
As you can imagine we talked a long time about the upcoming General Assembly and Dystonia Day in Malmö, Sweden. These events take a lot of time to organise and we all appreciate the work that Monika and Merete put into making these meetings such a success.
In the meantime we hadn’t forgotten that poor Merete was in bed poorly and I took her some soup at lunch time hoping that she would be feeling well enough to eat it. I knocked on her door but she wouldn’t open it until I had stepped well back as she was worried she might pass on the bug she had caught. So I stepped out of sight and I heard her open the door and say thank you although she couldn’t see me. She is always thinking of others and didn’t want me to also be ill, although I did laugh at her saying thank you to the empty corridor.
In the afternoon we had to move to a much smaller room as the hotel had double booked our meeting room. The staff did help us to move though and also gave us a generous discount off the bill. In order to connect her laptop to the overhead projector Monika had to sit in the corner of the room on a window sill, she looked like a little pixie. She did eventually get a longer cable and could re-join us at the meeting table. We do occasionally need to be flexible and sometimes inventive about how we set up our meetings!
Dinner that night was in the hotel again and we all enjoyed relaxing and chatting after a long meeting. Merete was feeling a little better but not well enough to join us for dinner, I am happy to say she did recover well!
Next morning Jukka and I met early to get the 7am bus to the airport. The rest of the board were travelling at various times throughout the day. We had a light breakfast at the airport then Jukka and I went off to find our departure gates at opposite ends of the airport.
I was home by about 11am which is very unusual for me but also very nice to be travelling through the day and not being tired when I got home.
My son was waiting to pick me up as my husband John was taking a group of walkers on a guided walk through part of Northumberland, where we live (he is a Northumberland Park Ranger).
I came home with lots of lovely memories of our time in Dublin and am looking forward to meeting up again in Malmö at the end of May.
Gill Ainsley, President, Dystonia Europe
