Volunteering

Background

The Tuberous Sclerosis Association (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

We’re recruiting an exceptional person with a proven track record in finance management to join our board of trustees.

About being a trustee

The Charities Act 2011 defines charity trustees as the people responsible under the charity’s governing document for controlling the administration and management of the charity. The Charity Commission website has a short section setting out the role and responsibilities of a charity trustee.

About the role

We are looking for an enthusiastic professional with specific knowledge and experience in financial management. Our current Treasurer will be stepping down next year, therefore we’re especially looking for a talented and engaged trustee with professional expertise in finance to act as our Treasurer from November 2024.

The TSA is undergoing a time of positive change and we’re recruiting dynamic, forward-thinking people to join the TSA team and our board of trustees to help shape our future. As a trustee, you’ll be responsible for the management and administration of the charity and hold a vital role in steering the work of the charity in a positive direction. In particular, your key responsibilities will include:

• Working closely with the Joint Chief Executives in relation to TSA’s financial affairs; guiding the Joint Chief Executives on a range of financial matters and providing advice on an ad hoc basis
• Providing oversight of TSA’s financial affairs on behalf of the Trustees
• Advising on the financial implications of strategic and business plans
• Monitoring and reporting on the financial health of the TSA, including reviewing monthly cashflow forecasts and quarterly management accounts (prepared by our accountants) and identifying any areas for concern
• Reporting the financial position at trustee meetings and taking a lead in interpreting financial data to fellow trustees
• From time to time supporting staff on the financial aspects of fundraising applications
• Liaising with our accountants as needed, including in preparation of annual accounts

To find out more about the TSA, our charitable objectives and our current five-year strategy, please visit our website.

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.

Person specification

All TSA trustees must be able to demonstrate the following skills and values:

• A commitment to the charity
• A willingness to devote the necessary time and effort required to meet the demands of being trustee
• An understanding of the TSA’s strategic vision and values
• Good, independent judgement
• An ability to think creatively
• A willingness to speak their mind
• An understanding and acceptance of the legal duties, responsibilities and liabilities of trusteeship
• An ability to work effectively as a member of a team
• An ability to challenge current thinking, the method of governance and management of the charity in a constructive manner
• Ability to evaluate and interpret management information and other data/evidence

How to apply

If you want to make a real difference to people’s lives and meet the above criteria, please submit a cover letter (no longer than two sides of A4) outlining your background, including relevant personal and professional experience, as well as your interest in TSC and the TSA by 24 March 2023.

Early applications are encouraged as we will be reviewing applications on a rolling basis.

Shortlisted candidates will have a structured conversation with at least two existing trustees prior to the full TSA Board considering all shortlisted applicants.

We hope to appoint the new trustee at our next TSA Board meeting on Tuesday 27 June.

If you are unsuccessful, we may add your details to our prospective trustee list and may come back to you in the future should further opportunities that reflect your skills arise.