October 3, 2017

French Dystonia Association AMADYS Celebrated its 30th Anniversary

Last weekend the French Dystonia Association, AMADYS, celebrated its 30th Anniversary in Lyon, France. Over 200 participants had come from all over France to take part in the event.
President Edwige Ponseel welcomed everybody and wished them a fun and festive day. Professor Vial, member of the AMADYS Scientific Committee, was proud to welcome the participants to his home town.

After a special presentation by Dr. Jean-Pierre Bleton to honor late Professor Pierre Rondot (French movement disorder expert with special interest in dystonia), Michel D’Angelo took us on a historic journey of dystonia and AMADYS. From the beginning there were two dystonia associations in France and from 2007 they joined together in AMADYS. Today the organization has approximately 1600 members.

Dr. Marie-Hélène Marion’s presentation focused on the history of botulinum toxin and how its discovery as therapy for dystonia contributed to greatly improve treatment results for many patients. Professor Brigitte Girard presented her book about blepharospasm for dystonia patients. With the support of Merz it had been printed and was distributed for free.
Other scientific presentation were given by Professor Vial who spoke about MyDystonia the APP and Professor Vidailhet spoke about dystonia and research. Professor Emmanuel Flamand Roze presented a research project Agent10.

In between presentations there were various workshops to attend and participants had to sign up in advance. The workshops were on: Writer’s Cramp, Musical therapy, Feldenkreis therapy, Cervical Dystonia, Hypno therapy. Experts led these much appreciated workshops.

In the meeting room you could visit the exhibition of AMADYS 30th Anniversary art work. There were paintings, wooden sculptures, poems etc to honor the Anniversary. In another area of the meeting room were the main sponsors of the event with their information tables: Ipsen, Medtronic and Merz.

A three-course lunch was served accompanied by festive music. Special awards were given to certain members and advisors for their long-term and dedicated commitment to AMADYS. A young woman performed an Anniversary song especially written for the occasion, and got big applause. The Anniversary cake candles were blown out jointly by several members.

In the afternoon followed presentations from the various partners of AMADYS: BrainTeam; AMR – Association for Rare Diseases; Aptes – Association for Essentiel Tremor; FRC – Association for brain research; ICM – Association for patients with chronic diseases.
Dystonia Europe presented the work of our organization and the advantages for a national dystonia association to be part of an international network. There can be an exchange of ideas and activities between countries. A successful project in France can be as successful in Finland and vice versa. There is update on treatment and research between member countries. Dystonia is represented on a European level for all dystonia patients in Europe. And together we are stronger and can make our voices better heard in projects such as raising awareness and for example our successful Jump for Dystonia campaign.

After a very interesting and fun day Edwige brought on stage her ‘Dream Team’ – the 11 board members of AMADYS – and thanked them all for their hard work and support. She also thanked the audience for coming to Lyon and taking part in this very special occasion for the association. Finally we all gathered for a group photo and of course a huge AMADYS Anniversary JUMP for Dystonia.

From Dystonia Europe we thank Edwige and her Board – the “Dream Team” for a beautiful and well organized event for their members and guests. We wish you much success in your future work.