Our Board of Trustees includes people from a variety of backgrounds and skills. To ensure best business practice, we have four board-level committees.

DEBRA committees:


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)
  • Dan Mundy (Vice Chair)
  • Jim Irvine
  • Simon Talbot
  • Tony Byrne (CEO)
  • Simon Jones (Director of Finance)


    Charitable Purposes Committee

    DEBRA’s Charitable Purposes Committee (CPC) 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 CPC 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)
    • Mick Thomas (Vice Chair)
    • Viv Mundy
    • Ajoy Bardhan
    • Henry George
    • Graham Marsden 
    • Paul Cotton
    • Gareth Jones
    • Debbie Install


    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
    • Carly Fields
    • Jo Merchant
    • David Spence


    Remuneration Committee

    The purpose of the Remuneration Committee is to recommend to the Board fair remuneration for the Chief Executive and Senior Management Team of DEBRA and to review the Chief Executive’s recommendations on the Annual Pay policy for DEBRA.

    • Simone Bunting (Chair)
    • Jim Irvine
    • Jo Merchant
    • Simon Talbot


    Learn more about our trustee board and how to become a trustee.