Trustee Communications or Charity Retail

Alex The Leukodystrophy Charity (Alex TLC) is a leading organization providing essential support and information to individuals affected by leukodystrophy. Leukodystrophies are rare genetic disorders that primarily impact the white matter of the central nervous system, with over 100 known types. Since 2004, Alex TLC has been recognized internationally as a center of excellence for its efforts to support those living with any form of leukodystrophy worldwide.

As the only UK charity dedicated to this cause, Alex TLC plays an integral role in improving lives and raising awareness about these rare conditions.

This is a volunteer position for the role of Trustee at Alex The Leukodystrophy Charity, conducted remotely. The Trustee will contribute actively to the governance and development of the charity, ensuring it operates effectively and sustainably. Responsibilities include attending board meetings, contributing to strategic decision-making, providing guidance on charity activities, and assuring compliance with regulatory requirements. Trustees are expected to ensure the charity adheres to its mission and effectively supports individuals and families affected by leukodystrophy.

• Governance, leadership, or board experience, with the ability to support organizational growth and development.
• Skills in strategic decision-making, financial oversight, or policy development.
• Experience in Communications or Charity Retail.
• Familiarity with rare diseases, healthcare, or the charity sector would be beneficial.
• Strong communication skills, teamwork abilities, and commitment to the organization’s mission and values.
• Access to a computer and stable internet connection for remote working.