Last June there was a webinar on DBS (Deep Brain Stimulation). This webinar was mainly for patients and focused on the benefits of DBS for dystonia patients that does not have sufficient effect from other treatments like for example botulinumtoxin and other medication. After Edwige Ponseel, President of Dystonia Europe opened the webinar and welcomed…
Dystonia Days Meeting
We were all looking forward to meeting in Dublin on Wednesday 31st May, after the covid pandemic prevented us from meeting for more than 2 years we have a new appreciation of meeting in person! My flight to Dublin from Newcastle, England was very short and comfortable, on arrival at Dublin airport there were no…
My Dystonia Story, Meet Raquel Vaqas
My name is Raquel, I’m Spanish but I have been living in Italy since 2005. I was diagnosed with cervical dystonia in 2013, symptoms started early 2010. I had selective denervation surgery and since then I’ve been getting botulinum toxin injections every 4 months. I wished to become a mother but I was afraid about…
Dr. Michael Zech Receives the David Marsden Award 2023
Our congratulations to Dr. Michael Zech, from the Institute of Human Genetics, Technical University of Munich and the Institute of Neurogenomics, Helmholtz Zentrum München, in Munich, Germany and the David Marsden Award 2023 for his paper: Biallelic AOPEP Loss-of-Function Variants Cause Progressive Dystonia with Prominent Limb Involvement. Last July Dr. Zech was presented with the…
Unlocking Minds and Opening Doors
As a member of the committee (board) for Action for Dystonia, Diagnosis, Education and Research (ADDER), I was recently asked by our local Neurological Alliance (Neuro Key) to help produce a leaflet as part of their ‘Open Door’ campaign. The campaign has produced several leaflets each one about a different neurological condition with the aim…
