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,…
How Dystonia Europe Came to Be, and What a Life’s Work in Patient Advocacy Has Brought Alistair Newton | The Positive Twist Podcast
In today’s episode we hear Alistair Newton tell his dystonia story, as well as share with us his important involvement in the dystonia community. Alistair founded Dystonia Europe as a result of being diagnosed with cervical dystonia himself. He has furthermore been involved in many great initiatives for improving the lives of people living with…
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…
