After around two and a half years, our CEO Guy Parckar has left the Society.
On leaving, Guy said: “The Dystonia Society is the most wonderful charity, doing fantastic work and it has been an absolute privilege to be a part of that. It feels like the right time now for me to move on, to spend as much time as I can with my three young children, and allow the Society to focus on securing the income it needs to build for the future. I've met so many wonderful people over the past couple of years, and I leave feeling very positive that while there will be challenges ahead, the Society has the ability to meet them, and can build and grow from here. Thank you so much to everyone who supports the Society, and all the people - members, volunteers, supporters and staff - who make the Society what it is. It has been a privilege to get to know you all!"
In the short term, we have a new Interim CEO called Alan Gosschalk - he is contactable via alan@dystonia.org.uk – and we are starting recruitment for a permanent CEO. You can see the job advert below.



Chief Executive Officer Job Advert

The Dystonia Society is looking for an experienced charity executive to lead this ambitious organisation. This is an exciting opportunity for a charity leader who has a passion to roll their sleeves up and work alongside a committed team to deliver support that will radically improve the lives of people living with dystonia.

If you can develop strategies that will deliver growth, inspire teams to work with commitment, and build great relationships that will advance the cause, we would love you to consider applying for the position of CEO of the Dystonia Society.

As part of a close-knit team based in London with two members of staff elsewhere, you’ll be at the forefront of developing services, sharing information and raising awareness that will dramatically improve the lives of all those who live with dystonia in the UK.

Life will be varied and busy, but never dull. One day you will be meeting with medical professionals and the next you will be shaping fundraising strategy. In leading this charity, you’ll have the opportunity to get directly involved in every aspect of operations, from developing new income streams and overseeing financial planning, to building relationships and developing new contacts with corporate partners, philanthropic supporters and the wider medical community.

Our team is keen to learn from your experience and put in the hard work we know is necessary to sustain growth and impact. You’ll have the freedom to put your knowledge, contacts and expertise to good use and will be fully supported by the Board of Trustees as you do so.


About The Dystonia Society
Dystonia is an umbrella term used to describe a range of neurological conditions characterised by involuntary and sustained muscle spasms. The condition affects roughly 70,000 individuals in the UK, around 8,000 of whom are children and young people. It can leave people in incredible pain as it forces the body into abnormal movements or postures.

As the only national charity in the UK supporting people with dystonia, their carers and the medical profession, demand for our support and advocacy services is high. Each year our website has around a million hits and our helpline takes several thousand calls. We are an essential resource for so many families, so it’s imperative that our services continue to develop as demand increases. As CEO, you can help us to provide vital support, information and advocacy services.

Salary - £60,000 - £65,000 (pro-rata) + benefits
Four days per week (negotiable / flexible working arrangements)
Vauxhall, London
For more information please contact Arun Sharma at arun@tfaltd.co.uk or on 0330 3501189. Download a job description here.
Closing date: 5pm, 15th November 2017.

Just been diagnosed?










   Help Line