1. Dystonia UK

Chair of Trustees

UK-wide with access to London

Dystonia UK is seeking a new Chair to lead the future development of the only national charity dedicated to supporting people with dystonia throughout the UK.

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Who we are

Dystonia UK, the only national charity providing support, advocacy and information for anyone affected by dystonia, a neurological movement disorder estimated to affect 100,000 people in the UK. There is currently no cure. It may have a life-changing impact on both adults and children, requiring long term treatment and care. In addition to the physical impact of a movement disorder it also leads to pain, mental health problems, social isolation, and reduced employment opportunities.


The role

​We are looking for a new Chair who will succeed the present one at the end of his term of office.

We exist to give hope and support to those living with dystonia. Creating UK and worldwide awareness.

This is an exciting opportunity to lead the work of Dystonia UK, the only national charity providing support, advocacy and information for anyone affected by the neurological movement condition known as dystonia. This disabling condition may have a life-changing impact on both adults and children, requiring long term treatment and care. In addition to the physical impact of a movement disorder it also leads to pain, mental health problems, social isolation, and reduced employment opportunities.

Dystonia is a neurological movement disorder, estimated to affect 100,000 people in the UK. There is currently no cure. We have been successful in raising its profile and introducing innovative new outputs over the last few years, especially through developing our digital offerings. Nevertheless, our relatively low income means that operating on a UK-wide basis and meeting the varying needs of people living with dystonia is challenging.

We now seek someone with the leadership skills and commitment to take the charity forward into the next stage of its life. You will lead the small team of staff, trustees and volunteers to maximise the benefits we can achieve for people living with dystonia while ensuring that the charity can operate in a financially and operationally sustainable way.

You will bring a commitment to the organisation and its strategic vision alongside a strong willingness to devote the necessary time and effort to its management and governance. You will also demonstrate a willingness to learn about dystonia and the support needed by people living with dystonia.

You should have:

· Previous experience in management in the private, public or third sector, especially involving financial responsibility,

· The ability to lead and develop a team of staff and trustees, and work with other stakeholders, to achieve the charity’s objectives,

· Experience of strategic and organisational planning,

· A willingness to devote the necessary time and effort to the role including attending some events,

· Excellent communication skills,

· An understanding of the legal duties, responsibilities and liabilities of charity trustees,

· A commitment to Nolan’s seven principles of public life: selflessness, integrity, objectivity, accountability, openness, honesty and leadership,

· Good digital skills as we now operate largely remotely, although some meetings take place in person for staff management or to support team building.

Desirable experience would include:

· A previous role as Chair or in a senior capacity in a charity,

· Previous experience of working with people with disabilities or healthcare needs,

· Understanding of the structure of the NHS

​Your leadership will be vital to ensuring the long term sustainability of the charity and the development of successful ways of achieving its objectives.

As a small charity, trustees are actively involved in some of our operational activities and the Chair also undertakes some executive responsibilities. Over time, it is intended that these activities should be spread more widely among trustees or volunteers.

Further information about Dystonia UK can be found on our website at: https://www.dystonia.org.uk/

Supporting document(s)

  • chair-trustee---role-description-2023-v2.0.pdf - Download
This role closed on
This role has expired. To find more trustee roles, take a look at our current opportunities

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