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Our committees

To support the board in decision making and to ensure best business practices, we have six board-level committees. 

DEBRA committees

 

Finance, Risk & Audit Committee (FRA)

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 life-long care and support for the UK EB community, and the investment into pioneering research to secure effective treatments.

Members of the FRA committee include DEBRA UK Trustees, members of the DEBRA UK leadership team, individuals with financial, audit or risk expertise, and people either with EB themselves, 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 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 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 charity’s Risk Register and recommending risk management strategies
  • 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 DEBRA’s 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 and Deputy CEO, the Director of Finance and other members of the Senior Leadership Team 

FRA Committee members:

  • Katy Hinchcliffe (Chair)
  • Jas Jhaj (Vice Chair)
  • Douglas Macdonald (Interim Treasurer)
  • Tony Byrne (DEBRA UK CEO)
  • Simon Jones (DEBRA UK Director of Finance)
  • Laura Briggs KC

 

Charitable Purposes Committee (CPC)

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, EB community support, and healthcare. The Committee advises the DEBRA UK Board of Trustees on matters related to all these areas.

Members of the CPC include DEBRA UK Trustees, members of the DEBRA UK leadership team,  individuals with clinical research expertise, and people either with EB themselves or with a close connection to EB. 

Responsibilities of the CPC:

  • Continually reviewing the DEBRA UK 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 EB community support and healthcare teams
  • Considering proposals for service developments
  • Receiving reports from the senior leadership team on budgetary control and the financial significance of decisions made 

CPC members:

  • Sandrine Letellier (Chair)
  • Simon Talbot (Vice Chair)
  • Mat Haskell
  • Jenny Heaton
  • Gareth Jones
  • Kevin Kealy
  • Catherine Umeh
  • Tony Byrne (DEBRA UK CEO)
  • Dr Sagair Hussain (DEBRA UK Director of Research)
  • Claire Mather (DEBRA UK Director of Member Services)

 

Nominations & Governance Committee

The Nominations and Governance Committee oversees the structure, composition and effectiveness of the charity’s Board of Trustees and its Committees, as well as the appointment process for trustees and ambassadors. The Committee monitors the governance procedures of the charity.

Committee members:

  • Simone Bunting (Chair)
  • Zoe Bailey (Vice Chair)
  • Carly Fields
  • Katy Hinchcliffe (Hegarty)
  • Jo Merchant
  • Gareth Jones

 

Remuneration Committee

The purpose of the Remuneration Committee is to recommend to the Board of Trustees fair remuneration for the CEO, Deputy CEO, and the Senior Leadership Team of DEBRA UK and to review the CEO’s recommendations on the annual pay policy for DEBRA UK colleagues. 

Remuneration Committee members: 

  • David Bendor Samuel (Chair)
  • Carly Fields
  • Katy Hinchcliffe 
  • Simon Talbot

 

DEBRA Income Generation Committee

  • David Bendor-Samuel (Chair)
  • Mick Thomas (Vice Chair)
  • Kevin Kealy
  • Pam Vick (fundraising & marcoms)
  • Isha Arilal (fundraising & Marcoms)
  • Simone Bunting (retail)
  • Andy Newman (retail)
  • Kevin Avaloine (retail)
  • Graham Marsden (retail)
  • Nayna McIntosh (retail)
  • Michelle Scott (Director of Retail)
  • Chris Clarke (Director of Marketing & Communications)
  • Simon Jones (DEBRA UK Director of Finance)
  • Hugh Thompson (Director of Fundraising)

 

Safeguarding Committee

  • Laura Briggs (Chair)
  • Simone Bunting (Vice Chair)
  • David Bendor Samuel
  • Tony Byrne
  • Annie Colehan
  • Liz Darke
  • Gavin Differ
  • Sagair Hussain
  • Dawn Jarvis
  • Claire Mather
  • Michelle Scott
  • Miranda Webber
  • Ailsa Winter

 

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

 

Our independent advisor

In addition to our trustees and committee members we are grateful to be able to count on the support of our independent advisor, Professor Chris Griffiths OBE.

Chris shares his vast knowledge and experience within the field of dermatology to support our research programme and mission to stop the pain of EB.

Find out more about Chris.