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    Volunteers Team

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  • Published:

    almost 3 years ago

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The BDFA's mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a cure.

The BDFA is looking for individuals with the time, skills and commitment to support our vital work by becoming Trustees and help us achieve our vision of a world without Batten disease.

The Board of Trustees is responsible for governing the BDFA and providing strategic leadership to plan its future direction and services.  Trustees are elected by the Charity membership at the AGM.

We need candidates with demonstrable understanding, expertise and/or experience of the governance of a charitable organisation. In particular, this year we would welcome candidates with any of the following experience/skills:

  • Knowledge of the challenges faced by families affected by Batten disease
  • Experience of fundraising
  • Experience of PR, marketing, networking and campaigning

The role is can be based anywhere in the UK and commitment is expected to be as follows:

  • Attendance at each bimonthly Board meeting (6 evenings per year)
  • Attendance at the annual AGM and Family Conference (usually October)
  • Additional work averaging around 2-4 hours per month, on a flexible basis, to carry out related duties

Further information

  • The term of office for each Trustee is 3 years (with the option to stand for an additional 3 years)
  • Trustees receive no remuneration for their services
  • The role is voluntary and the Charity may reimburse out of pocket expenses incurred in the course of carrying out the role in accordance with the Charity Commission regulations.

A full copy of our strategic aims can be viewed on our website.  If you are interested in applying or would like to know more please contact Andrea West, BDFA CEO, or 01252 416110