Andrea WestI write this piece in the middle of my first week with The Dystonia Society and I am thrilled to be able to introduce myself and take up this role with such a vital and well-supported organisation.

Firstly, a little bit about me.  I started my working life as a research psychologist in clinical trials and research into breast and ovarian cancer.  I moved then to work in hospices and specifically children’s hospices before requalifying as a counselling psychologist and working in primary care.

I began my charity management career when I headed up an organisation called the Brigitte Trust which provided end of life counselling support to people in their own homes. I come to The Dystonia Society after seven years as CEO of the Batten Disease Family Association.  Batten disease is an ultra-rare, fatal, neurological condition and the children who are affected also have dystonia. 

Having worked in the neurological charity sector for some time now, I hope I can bring the skills and experience to work alongside our committed team, to see The Dystonia Society through what has been some challenging times.  I firmly believe that there is huge potential for this organisation to deliver critical support services, drive the treatment agenda and influence government.  This is essential to ensure that everyone diagnosed with these conditions has access to the best quality care to enable them to experience life to the full.

But no one can or should do this alone.  The Society only exists because of the outstanding commitment of staff, trustees, members, and every supporter who raises funds to enable us to deliver critical services. 

So it is with thanks to all of you that we have this opportunity to make a real difference to the lives of individuals living with dystonia.  Please do get in touch if you would like to talk to me about the Society, your experience or any ideas, we WILL do this together.


Andrea West

Chief Executive

[email protected]