Catalina Crainic, President ‘Asociatia Childrens Joy’, Romania A fundraiser for genetic testing of 12 people with dystonia by The Children’s Joy Association (adults and children). Diagnosis and classification of dystonia is of great importance for the proper management of prognostic information and genetic counselling of patients. The cost of a test is $250. Genetic testing…
UK, Reach Out, Reach All
In October 2020, we were awarded a grant by the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund. Thanks to this funding, we have been able to further grow our ‘Reach Out, Reach All’ campaign and bring the dystonia community closer together, despite the challenges of the pandemic. We brought you a…
ITALY, DystOlympicGames – A.R.D.
From left: Leonardo on the rope and Giorgio on the bicycle. During the month of March in our social media we have launched the project “ Le DIstoniadi – anche il tuo passo conta” which means “ DystOlympic games – your step counts too”. We asked our followers to send us videos and photos of…
First Italian Dystonia Day
On September 26th A.R.D. (Associazione per la Ricerca sulla Distonia) organized the first Italian Dystonia Day. At the end of last year we had the idea of creating this day and began to draft some concepts. However, in March we realised that due to the Covid-19 pandemic we were compelled to change our plans. Eventually,…
United Kingdom – Dystonia Awareness Month September 2020 Action for Dystonia, Diagnosis, Education and Research (A.D.D.E.R.)
A.D.D.E.R. is a dystonia charity based in the North East of England and we have been supporting people with dystonia for 20 years. We are a small charity in that our committee is made up of only 7 volunteers, 6 of us have dystonia in various forms and all 7 of us give our time…
