This article was published in Dystonia Dialogue, Winter issue 2020 of DMRF (Dystonia Medical Research Foundation in the US), and we are happy to share it with our readers. The article is about the recently published research using a new diagnostic tool diagnosing dystonia from MRI. Researchers at Massachusetts Eye and Ear in Boston have…
Jump for Dystonia Winners 2020
#jumpfordystonia2020: the Winning Jumps Last September, we relaunched our 5-year old campaign Jump For Dystonia, to celebrate the freedom of movement with a jump to raise awareness of dystonia. This time with a twist and with the possibility to win some cash prizes. We asked our followers what type of jumper they are: splash, grounded,…
Results of EFNA’s Survey on Stigma and Neurological Disorder
In celebration of World Brain Day 2020, the European Federation of Neurological Associations (EFNA) has published the results of its recent survey on stigma and neurological disorder. According to the World Health Organisation, stigma is a major cause of discrimination and exclusion: it affects people‘s self-esteem, helps disrupt their family relationships and limits their ability…
My Dystonia Patient Story
My name is Emilie and this is the story of my life with dystonia. I’m not quite sure when the first symptoms started to appear, but approximately around 9-10 years of age. I first had pain in my left arm and it felt a little weak. As a child, I remember that I just…
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…
