25th Anniversary and D-DAYs in Brussels

On 12, 13 and 14 April the Dystonia Europe 25th Anniversary celebrations took place in Brussels, Belgium with several events and activities.

Dystonia Europe Delegates from 16 member organizations participated and arrived in Brussels already on Thursday. They were from Denmark, Finland, Sweden, Norway, France, Belgium, Ireland, Croatia, Italy, Switzerland, Romania, Germany, Poland.

The highlight of the weekend was the special EU lunch event held in one of the Members’ Salons in the EU Parliament. The lunch was hosted by Finnish MEP Merja Kyllönen and she welcomed speakers and the 70 guests. The keynote address was given by Professor Maja Relja who presented the preliminary results of the dystonia survey about time of diagnosis, access to treatment and quality of life. Read more about this event on page 7 or on our website: https://dystonia-europe.org/activities/events/dystonia-europe-2018-brussels/eu-lunch-event/ .

Treasurer Erhard Mätzener

Treasurer Erhard Mätzener

Friday morning the formal Annual General Assembly took place. After President Merete Avery´s welcome address Executive Director Monika Benson, gave an overview of the activities and projects th

at had taken place during 2017. This was all described in the Annual Report that had been  sent out to all delegates in advance of the meeting. You find it on the DE website: https://dystonia-europe.org/media/annual-reports/

Treasurer Erhard Mätzener presented the 2017 annual accounts and the budget for 2018 which were both unanimously approved.

A new application for membership of Dystonia Europe had been submitted by the German dystonia association “Dystonie und Du”. Its President  Volker Kreiss presented the organization and its goals and activities. The General Assembly approved their membership.

For the Sharing Best Practice session three of our members presented some interesting projects. Catalina Cranic from Children’s Joy Association in  Romania, Maria Hickey, from Dystonia Ireland and Edwige Ponseel form AMADYS, France. Read more about it in this newsletter.

Delegates at the General Assembly

Delegates at the General Assembly

The actual D-DAYs conference opened after lunch and there were not many empty chairs in the conference room. The 100 participants were  welcomed by a special Dystonia Europe 25 th Anniversary Movie, followed by DE President Merete Avery who wished everybody some fruitful and interesting days. Martine de Wilde of the Belgian Dystonia Association welcomed the Belgian members and the international guests and wished them a nice weekend in Brussels.

On the first day the sessions focused on dystonia history and research and on Saturday it was about treatment and rehabilitation. For the first time we had dystonia patient stories on the programme and this was very much appreciated. We heard Amybel from the United Kingdom. She was diagnosed as a child with generalized dystonia. She was treated with DBS (Deep Brain Stimulation) and has recovered well. Recently she graduated from Medical School. Cristina from Italy gave everybody an insight in how it is to live with musicians dystonia and what therapies worked well for her.  Erhard from Switzerland has blepharospasm and his strategy to handle the symptoms is to hum and sing.

All presentations were livestreamed and video recorded and are available on the Dystonia Europe Youtube Channel: https://www.youtube.com/user/DystoniaEurope/videos . On our website you will find the Abstract Book, containing most of the presentations.

Members and partners of Dystonia Europe

Members and partners of Dystonia Europe

The 25 th Anniversary Dinner Celebration took place at the KWINT restaurant overlooking Brussels. Networking and sharing of ideas and  experiences was mixed with some fun. Speeches and gifts were handed over by some of the member organizations.
DE Board member Adam  Kalinowski had prepared a Quiz and the winning team received Belgian chocolate of course. Then followed some Dance for Dystonia.

Saturday evening Dystonia Europe delegates and guests went on a guided tour of Brussels followed by dinner. The rain was pouring down but people were just as happy. After dinner some of the members headed over to Grand Place and in spite of the rain did some jumps for dystonia in the Belgian capital.

From the evaluations and feedback we have so far received we understand that it was a successful event.

It was very nice to work in close partnership with the Belgian Dystonia Association and we would like to thank them for all their support with various matters. We also would like to thank all of our sponsors, whose generous contributions made this meeting possible. They are: Boston Scientific, Foundation for Dystonia Research, Ipsen, Medtronic, Merz, and VIB.

Next year we are heading to London for our D-DAYs 2019. Date and venue will soon be announced. We hope to see you there!

Monika Benson
Executive Director
Dystonia Europe

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