ADDER (Action for Dystonia Diagnosis Education & Research)
Aims/Objectives: Raise awareness of dystonia amongst the general public and medical profession. Promote the treatment and offer support and welfare to people with dystonia, their carers and family. Encourage research amongst the medical profession. Dystonia is a rare neurological movement disorder which causes involuntary and prolonged muscle contractions. Dystonia can appear in any muscle group in the body and can be extremely painful and debilitating. It is a difficult condition to diagnose and unfortunately is all too often misdiagnosed leading to incorrect treatment. At ADDER we work hard to raise awareness of this condition which has no cure and while it is not life threatening it is life changing. We are currently trying to raise £100,000 for a Genetic Research project to be carried out at Newcastle University the main aim being to identify the faulty genes which cause dystonia and from that enable correct diagnosis by a simple blood test. If you think you may have dystonia or already know that you have, or maybe someone else you know has this condition, have a look at our website for more information and you are always welcome to become a member of ADDER.
Kibblesworth Millennium Ctr