The Society has a small team of staff based across the UK, with our head office in London.

Andrea West

Andrea West - Chief Executive Officer

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 re-qualifying 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 bring the skills and experience to work alongside our committed team, to take The Dystonia Society forward. I firmly believe that there is huge potential for this organisation to deliver critical support services, drive the treatment agenda and influence government. We have some unashamedly ambitious goals to ensure that everyone diagnosed with these conditions has access to the best quality care to enable them to experience life to the full.

I feel very privileged to lead such a committed community of staff, volunteers and members who are determined to make the difference to everyone living with dystonia.

[email protected] 

Dayna

Dayna Ferdinandi - Head of Fundraising and Communications

I am thrilled to be part of the team here at the Dystonia Society as Head of Fundraising and Communications. I started my career in the corporate space before I moved to the charity sector where I have been for the last 12 years and am honored to have worked with some amazing charities in a variety of roles, being involved in everything from gala balls to marathons, from tea parties to corporate presentations.

In 2017 I was able to work with the Heads Together campaign with their Royal Highnesses. This was a national campaign to get people speaking about mental health, the heart of it was smaller events to promote awareness and it culminated in London Marathon 2017, the 1st mental health marathon. 

I believe that charity should be all about people. I got involved in the sector to help people, through fundraising and raising awareness and I am so excited to put that same dedication and energy to the Dystonia Society. There is an incredible team here and the most amazing engaged supporters, I look forward to being able to help the charity grow and support everyone that is living with dystonia.

[email protected] 

Ann Dedman - Community Fundraiser

I have worked in the charity sector for 26 years.  Prior to joining the Dystonia Society 9 years ago I was manager and fundraiser for the Sutton & Croydon MS Therapy Centre.  I also worked for Age UK delivering 'Chances for Change' in Sussex through exercise and diet. 

I run a very small children's charity in memory of my beloved daughter, which provides respite for sick children & their families.

My claim to fame is winning the BBC 2014 Surrey, Sussex & East Hampshire  Community Heroes Award for fundraising.

I enjoy being part of a very committed staff team at The Dystonia Society. 

The best part of my job is talking and liaising with fundraisers at the start of their journey and seeing their event through to fruition, whether it's a coffee morning, running marathons or climbing Kilamanjaro.

I feel very positive about the future of the Dystonia Society. We are extremely fortunate to have so many wonderful members and supporters.

My hobbies are; Walking, zumba, growing vegetables, swimming outside (hoping to meet Tully for some technique!) and my Border Terrier 'Bluebell'.

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Flavie Belanco

Flavie Belanco - Fundraising Assistant

My name is Flavie and I am the Fundraising Assistant at Dystonia Society.

I have been working in the charity sector for 3 years for different charities such as Cancer Research UK, Oxfam and Independent Age. I love helping others and using my skills to support good causes.

I am very enthusiastic about working for the Dystonia Society. I appreciate the charity and its mission of helping the lives of individuals living with dystonia. I am also grateful to all the people that support the cause, whether it be staff and nurses or fundraisers and volunteers.

In my spare time I enjoy volunteering for other causes as well as practicing yoga, swimming, listening to music, watersports, playing my guitar, travelling and going to festivals and gigs.

[email protected] 

Angie Brown - Helpline & Support Manager

I have worked in the charity sector for the majority of my working life. 

I currently manage the Helpline, Advocacy and Support services at The Dystonia Society.

Previous to this, I was Senior Counselling Manager at the London HQ of ChildLine for 16 years.  Prior to that I worked as an Advocate with Voice for the Child in Care where I set up an out of hours advocacy service for children and young people who found themselves in dangerous situations.

I started working at The Dystonia Society in 2007 where I have developed several very successful projects including the One to One service, the Self-Management roadshow and the Carers workshops, as well as the advocacy project for people who have dystonia and are struggling with the benefits system.

[email protected] 

Barbara Williams - Helpline Officer

I have been working on the dystonia helpline since 2008, previously working and volunteering in the charity sector for over 20 years in various support roles.

It has always been a privilege to be part of the small but committed team of staff and volunteers at The Dystonia Society.

[email protected] 

Janet Scott - Helpline Officer

Hello, I’m Janet and I work on the dystonia helpline.

I’ve held a variety of roles in health and social care: pathology department within a large NHS hospital; family and dementia care social work, mental health and learning disability support services.

I came to the Society in 2009, and in spite of the above had never come across dystonia. In listening to people’s stories and experiences, I’ve gained an understanding of the challenges and battles that many people with dystonia face. I am pleased to be part of a compassionate and knowledgeable helpline team.

[email protected] 

Dorothy Chisholm - Scotland Manager

Dorothy has worked for The Dystonia Society since 2003. Before joining the Society Dorothy worked for a Carers Project, starting up and running a Carers Group, and worked for Chest, Heart and Stroke Scotland as a coordinator.

Dorothy is the Scottish Manager and is based in Scotland.

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Joanne Day

Joanne Day - Research & Information Lead

My association with the Dystonia Society began in 1990 when at the age of 16 I was diagnosed with dystonia. In 2000 I began working for the Society on a voluntary basis when I was asked to organise one of the first Living with Dystonia Days which subsequently became the format for future events to be held all over the country.

Following completion of my first degree in Medical Science, I worked within Pharmaceutical Sales for a few years, but in 2003 when I saw an advert for a job with the Dystonia Society I applied and was offered the position of Regional Co-ordinator and since then albeit in differing roles and balancing working with studying, I have remained working with the society.

I had always wanted to qualify as a Physiotherapist and being encouraged by the Society’s CEO who thought that once qualified the Society would benefit from my experience and knowledge, I applied and was accepted onto a Master’s Degree in Physiotherapy. Upon qualifying I balanced working with the Society as their Information Officer and as a Physiotherapist at a children’s hospice where I gained invaluable experience in treating and handling children with neurological and metabolic disorders.

In 2014 my position evolved, and I became Research and Information Lead and I now utilise my accumulated medical knowledge and experience to write the fact sheets / leaflets / booklets and articles for the newsletter. I also promote, secure and monitor Research Projects for the Society. Having been involved with the Dystonia Society for nearly 30 years, I have watched and as part of its dedicated team helped it grow from strength to strength and am passionate in my desire to help and raise awareness of this neurological condition, knowing and understanding the full sphere of its impact.

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Bernie McMahon

Bernie McMahon - Administrator

I'm Bernie and I am the Administrator at The Dystonia Society.

I have been working at the Society since 2010 but before that I was a volunteer in the office. Along with my admin duties I am the editor of Dystonia Matters and our weekly e-bulletin.

When I am not at work I enjoy reading, writing, art, and collecting bears. I am also a fan of Star Trek and Doctor Who.

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Eva Gibson - Finance & Membership Assistant

I have been working at the Society since November 2015. Previously I was working for a variety of for profit companies and for non profit organization. The contrast is vast. 
The Society has a purpose of helping people and working with this dedicated team we have here gives me feeling of satisfaction when I can see the result in the first hand.

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