President Edwige Ponseel
Edwige is the President of the French Dystonia Association, AMADYS. The objectives of the association are to provide support to dystonia patients, to raise public awareness, to promote research and to organize meetings and events. Edwige works in the purchasing and marketing department of a company near Paris. She was diagnosed in 1994 with cervical dystonia. She was elected to the DE Board at the General Assembly in Rome in 2017 and reelected in 2019.
Following being the Vice President, Edwige is now the President of Dystonia Europe.
Vice President Jukka Sillanpää
Jukka Sillanpää has been the President of the Finnish Dystonia Association years 2018-2023. He has also been a Board Member of the Finnish Movement Disorder Diseases’ Association since 2020, as well as a Board Member of the Finnish Parkinson Foundation since 2025. He is an active member in the Finnish Network for Rare Diseases.
Jukka has a University degree in accounting and finance. He has much experience in management and financial accounting as well as business planning in his working life. Jukka is fluent in English and has a lot of experience in different roles in the association. Jukka has Cervical Dystonia.
Secretary Gill Ainsley
Gill is very interested in raising awareness of dystonia and in research that would lead to a cure for dystonia. Gill’s first language is English, she is also a skilled computer operator. Gill’s profession is engineering and she worked for many years as an Electromagnetic Compatibility Test Engineer on aircrafts.
Gill was nominated and elected as Board Member to Dystonia Europe in 2019 and was the Secretary and the Vice President of Dystonia Europe. In May Gill chose to step down as Vice President and is now Secretary and Board Member.
Treasurer Sissel Buskerud
Sissel is the Treasurer/ Accountant responsible and Board Member of the Norwegian Dystonia Association for the last 7 yrs. Sissel has experience for more than 25 yrs. as an Accountant for a Norwegian Security Company. Sissel was elected to the DE Board at the GA in London in 2019 and is the Treasurer of Dystonia Europe.
Board Member: Catalina Crainic
Catalina Mariana Crainic is the President of the Romanian Dystonia Organisation, Associata Childrens Joy and a Board Member of National Alliance of Rare Diseases, Romania. Catalina has broad training, within Art and Painting and also in Educator Recovery within the field of Social and Pedagogical for people with special needs. She also have training in Rare Diseases for Journalists and Effective Communication with the press, representing patients organisations.
Board Member: Salvatore Caruso
Salvatore Caruso is a Board Member of the Italian Dystonia Association A.R.D.Salvatore works as a technical writer at an international company. He works daily in English, gathering and structuring complex information for a diverse audience. Salvatore speaks fluent Italian, German and English. His involvement in technology and AI projects ensures that he remains up to date with innovative solutions. He possesses a broad understanding of geopolitical trends and societal developments, which informs his approach to policy and strategy at a European level. Salvatore is dedicated to fostering a stronger pan-European network, which is essential for advancing support and advocacy for the dystonia community.Salvatore has dystonia and underwent DBS surgery. In addition his father and daughter live with dystonia, which has provided Salvatore with a clear understanding of the challenges faced by those affected.
Board Member: Mats Nyberg
Mats Nyberg is the Chairman of the Swedish Dystonia Association. He has been active in the Swedish Dystonia Association for 4 yrs. First 3 yrs. as Board Member and the last year as Chairman.
Mats has experience in an NGO working for better education in low- and middle-income countries and also has a long engagement in the Swedish Association as a Board Member for many years. Mats is fluent in English and Italian. In addition, he understands and speaks German at a fair level. Mats is used to present and discuss matters in groups and in front of audiences.
Mats has had cervical dystonia for about 15 years and underwent DBS surgery 9 years ago.
Board Member: Pia Vejle
Pia Vejle is the Chair of The Danish Dystonia Association and has been involved in the association for almost 15 years and most of the time as President, which has given her a lot of experience training new volunteers, giving inspiration and developing the association.
Pia has a lot of experience and knowledge within IT and has a full-time job as IT consultant. As part of her job she also teaches sometimes. Pia understands and speaks English very well. She is creative and has at times taken over other positions within the association setting up Microsoft packages, SharePoint, website and producing the newsletter.
Pia has cervical dystonia.
