The Dystonia Europe D-DAYS 2017 and 24th Annual Conference and General Assembly were held on May 12,13 and 14th in Rome.
It was a joint event between Dystonia Europe and the Italian Association “Associazione per la Ricerca sulla Distonia ” A.R.D. who celebrated its 25th anniversary, as it was founded in Rome in March 1992 by Professor Alberto Albanese.
Dystonia Europe (former European Dystonia Federation) was founded in Spoleto, Italy, 24 years ago, and next year will celebrate its 25th anniversary in Brussels in April.
The meeting in Rome took place at Hotel Ibis Styles, in Rome EUR business district.
In the afternoon of Friday 12th the Dystonia Europe Annual General Assembly was held and 28 members from 13 countries participated.
Later in the afternoon a guided tour of Rome showed many interesting areas of the most ancient and powerful city of the past. We stopped near the Colosseum and all together jumped with our orange t-shirts “Jump for Dystonia” in front of this impressive monument.
Many tourists were there and took photos of us too! We stopped again at the Basilica of St.Peter.
On Saturday the conference began at 10 AM and there were around 100 participants, of which 50 A.R.D. members, coming mainly from Northern Italy, but also from the central part and Sardinia
Some Italian Professors spoke about Undestanding Dystonia, Treatment of Dystonia, Research and development.
Prof.Maja Relja from Zagreb spoke about “Non motor symptoms of dystonia. Occupational Therapist Hortensia Gimeno from London spoke about “Occupational therapy and dystonia” and Prof Buz Jinnah from Atlanta spoke about “Dystonia research around the world”. For more information on the presentations see:
The David Marsden Award was attributed this year to Dr.Niccolò Mencacci, born in Milan but at present working in the Dept.of Neurology of the Northwestern University in Chicago. He received the Award for his study about “A missense mutation in KCDT17 causes autosomal dominant myoclonus-dystonia”
We were proud that the award was given to an Italian doctor, even if he is now working in the USA.
In the afternoon a general discussion followed, during which the speakers answered many questions proposed by patients and participants; questions referred to general information about dystonia, while more specific or personal cases were dealt personally.
Then the president of A.R.D. Flavia Cogliati (in charge from February) illustrated the past, present and future of our association, followed by Beatrice Pozzoli who presented the recently issued book “Distorie”.
This title is a mix between” distonia” and “storie” (stories). It is a collection of short stories written by persons suffering from dystonia, in order to let peple know what it means and how their life has been changed by dystonia. It is the first time that such a book is presented in Italy.
The conference ended at 6pm. Later in the evening A.R.D. offered all the participants a dinner, which ended with a great cake decorated with “A.R.D. 25 anni” (ARD 25 years) We all toasted to DDAYs, Dystonia Europe and A.R.D.
On Sunday morning a special session called “DE members capacity building “ was held, during which representatives of some of the member associations shared some of their work and projects during the Best Practice session. Part of the morning was dedicated to a session by Simona Biancu (http://www.engagedin.net)
on how to plan a campaign and how to raise awareness about dystonia.
In the afternoon a meeting about the MyDystonia APP was held with the MyDystonia Ambassadors who are in charge of diffusing and explaining this app in their own country.
This Conference has been really appreciated by Italian A.R.D. members and for many of them it has been the first one they attend. It has been a unique opportunity to listen to both Italian and international speakers with important and interesting reports about our disease and also to meet other people with the same problem.
Even if nowadays it is easy to get in touch using social networks, a direct contact is more rewarding and involving.
We thank again Dystonia Europe for choosing our wonderful Rome as city of D-DAYs 2017.
Maria Carla Tarocchi
Vice President, ARD
