Update on the Genetic Survery of Dystonia
Over the past few months a couple of people have enquired as to what is happening with the blood samples taken several years ago and indeed when are we likely to get the results of the saliva tests taken last year. The answer is simply money, or the lack of it! Dr Butler has collected over 300 samples of blood and again over 300 samples of saliva from those people wanting to take part in the survey.
Everything is being done to raise the required £100,000 plus to get all of these samples tested and to employ a genetic counsellor in order to put the results obtained into some sort of persepctive. If anyone has any ideas or contacts as to how A.D.D.E.R. can raise this sum please contact us.
At a recent meeting with Professor Patrick Chinnery, he stated that although modern techniques have improved so much that a sample can now be genetically tested within hours, until we have raised sufficient money to cover the costs then nothing can be done.
However should anyone wish their saliva to be tested there are a number of different places, mostly in the USA, which can do this for you for about £200 per test. To get the tests done at the Centre for Life in Newcastle could cost upto £2000 per test.
We are as anxious as you are to get these results but we do need a genetic counsellor available too all of which costs money.Don't forget us if you win the Football Pools or the National Lottery, we could make very good use of a large donation!