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…
Meet Jana Vičarová The Czech Republic
From left: Jana Vičarová and Eva Brown What is your name? Jana Vičarová What are the benefits of working in a patient organisation? In the beginning, I had a desire to find someone with the same disability. Once I succeeded, it changed my life. It gave me a feeling of coexistence and the…
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…
My Dystonia Patient Story
My Dystonia Story by Emilia My dystonia story began at the age of 17. I am currently 39 years old. At the beginning, I was taking medications and had botulinum toxin injections, which helped. Except for maybe for 4 years I had peace, then my disease was in remission. In fact, I think my attitude…
