Who we are How we are governed Our committees Our Board of Trustees includes people from a variety of backgrounds and skills. To ensure best business practice, we have six board-level committees and various steering groups. All active DEBRA Trustees are listed in bold. DEBRA committees: Finance, Risk & Audit Committee Care & Research Committee Retail Committee Fundraising & Communications Committee Nominations & Governance Committee Steering Groups Finance, Risk & Audit Committee The Finance, Risk and Audit Committee (FRA) oversees the financial controls and stability of the Charity. It advises the Board of Trustees and is responsible for ensuring the sound financial management of the Charity, its resources and assets. This then supports the provision of lifelong care and support for sufferers of EB, and the investments in cutting edge research to find a cure. Members of the Committee include DEBRA Trustees, individuals with financial, audit or risk expertise and people either with EB or with a close connection to EB. Key responsibilities of the FRA Committee include: Submitting the annual Budget for the Charity for consideration by the Trustee Board. Ensuring routines, reports and accounts are established to monitor and control the finances of the Charity. Ensuring compliance with Financial Regulations and Financial Procedures and propose to the Trustee Board any necessary amendments to those regulations and procedures. Deciding on action to be taken in the event of any breaches of the regulations or procedures being reported by the Director of Finance. Monitoring and advising on compliance with statutory reporting requirements and approved financial practice and regulation. Recommending to the Trustee Board the appointment of external auditors and appoint as necessary internal auditors. Considering reports from internal and external auditors in respect of financial reporting and control. Approving the programme of work for internal auditors. Reviewing the Risk Register of the Charity and recommend risk management strategies as necessary. Recommending to the Trustee Board the adoption of the annual accounts. Reviewing and submitting the annual rolling 5 Year Business Plan to the Trustee Board for approval. Reviewing the DEBRA Reserves Policy on an on-going basis and recommending to the Trustee Board the minimum level of reserves to be held. Management of the charity’s funds, informing the Trustee Board of major movements between funds. Maintaining a strong working relationship with the CEO, the FD and other members of the Senior Management Team. Members of the Committee include DEBRA Trustees and members of the Senior Management Team. Committee members: Jo Merchant (Chair) Jim Irvine (Vice Chair) Simon Talbot Tony Byrne (CEO) Simon Jones (Director of Finance) Care & Research Committee DEBRA’s Care and Research (CAR) Committee shapes and guides the care and research strategy and vision of the charity. This includes oversight and development of both current and future research, membership of the charity, community support, and healthcare. The Committee advises DEBRA’s Trustee Board on matters related to all of these areas. Key responsibilities of the CAR Committee include: Continually reviewing DEBRA’s research and care strategy. Receiving reports and recommendations from relevant advisers on current research activities. Determining the priorities for research expenditure each year. Making recommendations to the Board of Trustees on funding decisions. Receiving reports on the activities of the community support and healthcare teams. Considering proposals for service developments. Receiving reports from the senior management team on budgetary control and the financial significance of decisions made. Members of the Committee include DEBRA Trustees, individuals with clinical research expertise and people either with EB or with a close connection to EB. Committee members: Carly Fields (Chair) Christo Kapourani (Vice Chair) Viv Mundy Ajoy Bardhan Jane Clapham Henry George Dr Sagair Hussain (Director of Research) Deborah Ohiwereh Graham Marsden Claire Mather (Director of Healthcare, Membership & Community Support) Retail Committee The Retail Committee determines and advises the senior management team (SMT) and the Board of Trustees on such matters relating to the shops. It utilises specific knowledge of its members to assist the CEO and Director of Retail to manage the shops, to deliver operational performance against plan, comply with regulations and promote the cause of the charity. Key responsibilities of the Retail Committee include: Discussing, assessing and reviewing the strategic direction of the shops. Agreeing and recommending to the SMT and trustees the annual Shops Budget. Ensuring that the appropriate management resource is in place at all times to deliver budget and the agreed strategic objectives. Ensuring routines, reports and accounts are established to monitor and control the functioning of the Retail outlets. Ensuring compliance with the appropriate regulations and procedures. Deciding on action to be taken in the event of any breaches of the regulations or procedures being reported to the Director of Retail. Considering reports form external consultants and the Charity Retail Association in respect of best practice, competitive positioning and performance. Reviewing the risk register relating to the shops and recommend risk management strategies as necessary. Members of the Committee include DEBRA Trustees and individuals with retail operations expertise. Committee members: Simone Bunting (Chair) Jo Merchant (Vice Chair) Tony Barry Tony Byrne (CEO) Simon Jones (Director of Finance) Chantelle Milne (Director of Retail) Other guests, such as the Deputy Director of Retail, are invited as relevant. Fundraising & Communications Committee The Fundraising & Communications Committee oversees the fundraising activities of the SMT on matters relating to the growth of income generation and maximising opportunities within Marketing and PR. The Committee approves and recommends to the Board of Trustees the strategic direction of fundraising and the financial plan. It utilises specific knowledge of its members to challenge and support the Director of Fundraising and Communications and the Marketing and PR Team to deliver against plans, comply with regulations and promote the cause of the charity. Committee members: Becky Edwards (Co-Chair) Douglas Rouse (Co-Chair) Simone Bunting Mick Thomas Hugh Thompson (Director of Fundraising & Communications) David Wilding Nominations & Governance Committee The Nominations & Governance Committee oversees the structure, composition and effectiveness of the charity’s Board of Trustees and its Committees, as well as the appointment process of trustees. The Committee monitors the governance procedures of the charity. Committee members: David Bendor-Samuel (Chair) Jim Irvine (Vice Chair) Simone Bunting Carly Fields Viv Mundy David Spence Steering Groups Through the use of steering groups, our board works closely with other staff within the organisation on additional matters such as: Equality, Diversity & Inclusion Health & Safety Safeguarding Learn more about our trustee board and how to become a trustee.