Chair of Trustees

Do you want to utilise your strong leadership skills to have a positive impact on the strategic direction and governance of a charity?

Are you passionate about developing people and fostering good relationships?

Do you have the time and willingness to get involved in steering the work of a charity to provide invaluable support to its community?

Alex, The Leukodystrophy Charity (Alex TLC) is looking to appoint a leader with the passion and vision to Chair our Board of Trustees, ensuring we effectively fulfil our strategic goals and direction.

Who we are

Alex TLC provides invaluable support and information to people affected by leukodystrophy.

Leukodystrophies are genetic disorders that mainly affect the white matter of the central nervous system (i.e. the brain or spinal cord). There are more than 100 different known types of leukodystrophy, including some so rare they only affect one or two individuals.

Established in 2004 we are an internationally recognised centre of excellence and the only UK charity providing support and information to people affected by any of the leukodystrophy conditions worldwide.

Our expectations of you

In the role of Chair, you will be instrumental in ensuring effective and strategic governance of the Charity. Your collaborative efforts with our Board of Trustees will play a pivotal role in promoting inclusivity, driving excellent, well-rounded and considered decision making and ensuring our sustained success and progress.

We are looking for a Chair to join the Board immediately. You will be required to attend a minimum of 3 board meetings per year, review documentation in advance and maintain regular and responsive communication with the CEO outside of meetings. Mentorship can be arranged to support the transition into the role.

This is a voluntary and unremunerated position.

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We will endeavour to make reasonable adjustments to remove barriers to this post. If you have any additional support or have any access or communication needs throughout the recruitment process, please let us know.