The Tuberous Sclerosis Assication (TSA) is undergoing a time of positive change and we’re recruiting two exceptional people to join our board of trustees. We’re looking for professionals with a proven track record in fundraising and/or charity law and governance to help shape our future.
As a trustee with fundraising experience, the main responsibility will be to offer a strategic insight into the charity’s overall fundraising strategy. You’ll work with the Joint Chief Executives, our board and other staff to ensure effective income generation is being achieved, while contributing important knowledge of fundraising techniques and recommendations.
As a trustee with a strong understanding and experience in charity law and charity governance, you will be a crucial contributor to ensuring our operations and governance align with UK laws and regulations.
About the TSA
The TSA is the only UK charity focused on improving the lives of people affected by rare genetic disorder Tuberous Sclerosis Complex (TSC). We provide help for today and hope for tomorrow by:
- Providing direction or a listening ear through our support and information services for the TSC community, including through our UK-wide TSA Support Line
- Organising events and opportunities across the UK and virtually for those affected by TSC, allowing the TSC community to come together and feel less alone
- Funding internationally significant research into the causes, diagnosis, management and treatment of TSC that has the greatest impact on those affected by the condition
- Campaigning on behalf of the TSC community to ensure that the TSC community has consistent and meaningful access to social support and healthcare provision
Expectations of a TSA trustee
- All TSA trustees are required to:
- Ensure that the charity pursues its stated strategic objectives by establishing a clear vision, mission and strategy, and ensuring that there is a common understanding of these by trustees, staff and stakeholders
- Ensure that business plans and budgets support the vision and strategy
- Ensure that the views of all stakeholders are regularly sought and considered
- Ensure there is regular review of the external environment for changes that might affect the charity (political, financial, demographic, competitive, partnerships)
- Ensure that the charity complies with all relevant policies, legislation or regulations
- Ensure that the charity applies its resources exclusively in pursuance of its strategic objectives
- Ensure that the charity defines its goals and evaluates performance against agreed targets
- Ensure the financial stability of the charity
- Hold the joint chief executives to account for the management and administration of the charity
- Ensure that the major risks to the charity are regularly identified and reviewed and that systems are in place to mitigate or minimise these risks
- Ensure that the charity has a governance structure that is appropriate to its size/complexity, stage of development, and its objectives, and reflects the diversity of its stakeholders
Alongside the usual expectations of a trustee, TSA Board Members are expected to attend:
- Four virtual Board meetings each year
- A virtual Annual General Meeting
- Around two annual face-to-face community events
Reasonable expenses are provided to trustees, including provision of care for any dependents. This ensures that there are no barriers to becoming a TSA trustee.
For further information, please see the job descritption and person specification.