Luc Montigaud is a 24-year-old Business School graduate living near Aix-en-Provence. He has suffered from dystonia since birth, which causes him difficulties with speech and fine motor skills. At the General Assembly in Paris,May 2023, Luc presented his crazy project to AMADYS members: to complete the Tour de France by duathlon (10km run each morning,…

On Sept. 30th Associazione per la Ricerca sulla Distonia (A.R.D.) organised the 4th National Dystonia Day. In order to increase visibility and attention towards dystonia, in 2020 we decided to create a National Day to be held on the last Saturday of September, preceded by articles or interviews published via various means of communication. The…

The Finnish Dystonia Association celebrated its 25th anniversary in September in Pori, Finland. As a nationwide organisation, we chose a new city as a venue. Approximately 50 members gathered to meet each other, to receive and provide peer support and to listen to interesting presentations by neurologists, physiotherapists, and rehabilitation psychologists. A new president was…

EPF (European Patient Organisation) held 2 webinars this autumn on a project were EU works on a quality label for health and wellness apps. This project is called Label2Enable made possible through funding from Horizon Europe. What will the project do? Label2Enable aims to promote the ISO/TS 82304-2 health app assessment framework and label to support the…

Jens Øyvind Loven, Jannicke Devold and Jorid Løvbakk are specialists in spastic dysphonia also called laryngeal dystonia. On the 6th and 7th September 2023 they were happy to participate in a meeting held by the Norwegian Dystonia Association at Hotel Olavsgaard, Skjetten in Norway about the condition and the treatment opportunities. Altogether there were 15…