November 3, 2020

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 and dedication free of charge, A.D.D.E.R. has no paid employees.

In the UK Dystonia Awareness Month is a new and very welcome concept. One of our main aims as a charity is to raise awareness and in the past we have done this by hosting conferences, running workshops and meeting with our members and other dystonia patients.

In the early days of A.D.D.E.R. we had regular contact with medical professionals and students and held prize giving events for essays/research in Dystonia. These days we feel the majority of medical professionals are aware of dystonia so our efforts now are mainly in raising awareness amongst medical students and we do this by once or twice a year giving a presentation to the students at a local university, our aim being to  persuade a few to go onto become neurologists of which there is currently a shortage in our area.

The September Dystonia awareness month has now become a big event in our annual calendar. It gives us some great opportunities to raise awareness and get our message out to as many people as possible.

This year of course presented us with a few problems to overcome. We certainly couldn’t host our usual meetings and/or conferences.

We decided the best and safest way to take part in Dystonia Awareness Month this year was to concentrate our efforts to our website and our facebook page.

On Facebook we shared the following every day:

  • Medical facts about dystonia.
  • Information on types of dystonia.
  • Positive messages on coping with dystonia.
  • Dystonia Europe awareness posts.

On our website we posted the following:

  • Dystonia Talks videos shared from Dystonia Europe.
  • Dystonia Europe videos of D Days 2019.

In the media:

  • We were fortunate enough to get one story in our local online newspaper which is read by thousands of people every day.


Our posts on Facebook regularly attracted over 1,000 people each day and our website traffic was  increased significantly.

On a personal note, as the newspaper article was about me, I got lots of lovely positive and supportive comments from my family and friends including friends I have not seen for many years.

The A.D.D.E.R. committee all share the same aim to raise awareness of Dystonia whether that is to thousands of people or one person, we consider our campaign to be a success.


Gill Ainsley
A.D.D.E.R. Treasurer and Administrator
Dystonia Europe Secretary



Facebook: ADDER_Dystonia