A.D.D.E.R. was formed in 1999 out of the North East branch of The Dystonia Society, which had been running since it was started ten years previously. The name A.D.D.E.R., which stands for Action for Dystonia, Diagnosis, Education and Research, was dreamt up by John Whitaker, our own Outreach Dystonia Nurse Practitioner, because A.D.D.E.R. is a snake which suddenly strikes out of the blue, which is a bit like dystonia. One minute you are fine and the next you have this irritating and annoying muscle spasm, in your neck or face or wherever, which will not go away.
When A.D.D.E.R. was formed as an independent charity, there were some strict rules which the entire dystonic population in the North East decided should be written into their constitution. There were four main aims.
To advance the education of the public in relation to the sickness and distress caused by dystoniaTo promote the treatment of people with dystonia and other related movement disordersTo offer support and welfare to patients, their carers and familiesTo promote awareness and encourage research amongst the medical professionals of the neurological conditions known as dystonia.
In order to achieve our aims we started off small, but with the tremendous support that we have received from all over the country, indeed throughout the world, we intend to work to develop these ideals to a greater extent in the years to come. We will always remain dedicated to these prime directives and will always be run for, and by, people with dystonia. It is one of our main aims to only employ people with, or associated with, dystonia and not to lose sight of these important ideals.
A.D.D.E.R. has a National Executive Committee of 12 persons, 4 of whom are elected every year and no one person can serve on the NEC for more than two terms totalling six years, after which they have to resign. This rule is important to ensure that the management of the charity has new and fresh ideas from new people on a regular basis.
A.D.D.E.R.'s registered address is listed at the home of its main founder, Mrs Verona Butler, who was elected as its first President in 2007. The telephone is monitored by volunteers when the office is closed.
A.D.D.E.R. has a number of different facilities which mainly relate to helping recently diagnosed dystonics to come to terms with their personal disorder and to help where appropriate with any state benefits likely to accrue due to their disability. A.D.D.E.R. has its own Welfare Benefits Advisor and will always give professional assistance to any member who has to appear before a welfare tribunal in order to get or maintain their benefits.
A.D.D.E.R. is a member of the Neurological Alliance nationally but is a founder member of the Tees Valley, Durham and North Yorkshire Neurological Alliance which has since 2006 been involved in promoting all neurological conditions. By combining together the neurological charities have a stronger voice than they have individually and this particularly applies to those smaller charities who have only a few members.
A.D.D.E.R. is also a member of the European Dystonia Federation which is an organisation which represents 19 different groups across 16 different countries.