March 13, 2017

Norwegian Dystonia Members Annual Meeting 2017 in Trondheim

This weekend the Norwegian Dystonia Association held its Annual Meeting and General Assembly in Trondheim, Norway. Around 40 members (dystonia patients and family members) had come from all over Norway for the 2-day-meeting. President Anniken Hansen welcomed everybody and gave an update of the achievements of the Association over the past year. The 3-year Physiotherapy Project has now come to an end and has been a great success. 82 physiotherapists from all over Norway have been certified. The Association has six local support groups throughout Norway which organise meetings twice a year for members in their regions.

After lunch neurosurgeon Sasha Gulati from St. Olav Hospital inTrondheim gave an informative presentation on DBS (deep brain stimulation) for dystonia, showing videos on how it is done and how it works. DBS is performed at two University Hospitals in Norway: Trondheim and Oslo, and more and more dystonia patienst are being treated with satisfying outcomes. His presentation was followed by NDF member, Cecilie Benterud, who shared her dystonia story and how she struggled until she finally, after three years, had a correct diagnosis. She had treatment with botulinum toxin but the results were not what she expected and in 2012 she was treated with DBS. ”I had a new life” she said. Today she is doing well and is working. We thank Cecilie for sharing her story.

MyDystonia Ambassador and NDF Board Member Sissel Buskerud gave a short presentation of the APP MyDystonia. Together with Monika Benson they encouraged the participants to use the APP which can be a helpful tool to support and facilitate patient/physician communication and improve treatment outcome. And the more we are using the diary the more anonymous dystonia data is collected. Monika stressed that ”your dystonia data today can help form the future dystonia patient pathway”.

In the afternoon all guests joined in a guided boat tour of Trondheim. The weather was gorgeous and so is Trondheim, Niedelva, the fjord and the surrounding mountains. There was also time for a short stop at the small island of Munkholmen. Here we all joined for a JUMP for Dystonia Under the Umbrella to support Brain Awareness Week, 13-17 March.

On the Sunday morning the General Assembly was held. President Anniken Hansen stepped down after leading NDF for four years. New President is Johan Arnfinn Warvik. We thank Anniken for all her dedication and great work for dystonia patients in Norway and we welcome Johan and wish him and his new team much success in their work.

Dystonia Europe had been invited to attend the meeting and was represented by Executive Director Monika Benson. It’s very important for us to meet with members in our different member countries. By talking and listening to them we understand better the needs and we can plan and move forward in our work for dystonia.
Thanks for inviting us and giving us the opportunity to attend your meeting.