People from the left: Board members Martti Ketonen and Leea Sihvo-Rajala, local volunteers Paula Hiltunen and Tuula Hirvonen (in front), board member Paula Happonen, and president Jukka Sillanpää, secretary Taina Lehtinen, and local volunteers Jaana Vainio and Aarno Komu. Photo: Tytti Svetloff, Finnish Parkinson’s Association After two years with restrictions to assemble due to COVID-19 pandemic,…
Children’s Joy Rare Disease Day
Rare Diseases Day was observed in Timisoara, Romania during the art exhibition’s 4th edition “Look at me from the inside” which is a continuation of the exhibition’s 3rd edition “Captive in my body”. This art exhibition reflects rare diseases including some forms of dystonia. The purpose of this exhibition is to draw attention to the…
Meet Jan from England: My Journey with Dystonia
I first noticed a problem with my neck, seventeen years ago at the age of 43. The main difficulty was trying to turn my neck especially when crossing a road. The situation worsened very quickly in that my neck was turning to the right. At the time I was working as a financial adviser…
Dystonia UK Activities 2021
As another unpredictable year draws to a close, Dystonia UK reflects on a busy year of activities, while eagerly looking forward to the potential opportunities of the New Year. Virtual activities have continued with great strength. At the time of writing, we have provided 6 ‘Reach Out, Reach All’ webinars, including one live from Scotland,…
A.D.D.E.R. Action for Dystonia, Diagnosis, Education and Research
This is the third year A.D.D.E.R. have designed and delivered our dystonia awareness campaign throughout the month of September. After a great deal of thought I came up with the idea of asking people to imagine what it is like to have various types of dystonia. The campaign was aimed at people who know nothing about…
