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I only took up my new role as chief executive of the Dystonia Society on the 8th of July, and already I have been amazed by the dedication, commitment and expertise of the people I have met and spoken to so far. I really feel as though I have joined a very special organisation, and hope that I can help to continue and grow all the fantastic work happening across the UK.

Whether it is the Society’s members, staff, the incredible volunteers who support our work, or the people who are taking on the most amazing challenges to raise the funds that we need to keep going, the Society is made up of a truly brilliant collection of people who all come together to make a difference.

I know that I have big shoes to fill following on from our last chief executive Paul King, and I also know that I have a huge amount to learn. Most crucially I really want to hear from anyone affected by dystonia about where we can make a difference. If we know what challenges people are facing, what has worked for them and what hasn’t, then we know where we can try to help.

It’s been incredible to hear stories even over my first few days from people telling me how the Society has helped them, whether that is through things like the fantastic, dedicated support offered by our helpline, through people coming together at events or local groups, or through the information and advice people have found online.

Because if there is one thing that will help me in my new role it is hearing from people affected by dystonia about what we can do to help. For those who need help and advice our telephone helpline is available Monday to Friday from 10:00 to 16:00 on 020 7793 3650, or you can email support@dystonia.org.uk.

But if you have any advice or information for me, then I want to hear that too. My email address is guy@dystonia.org.uk and it would be great to get as much information and advice as possible about people’s thoughts and experiences.

I’ll be getting out to as many groups and events as I can in the coming months, so I hope to meet as many people as possible to hear your views directly. But most of all, to all the thousands of people who contribute their time, expertise and resources to support the Society, I wanted to finish by just saying: Thank You!

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