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It is with sadness that the BDFA Board of Trustees announces the departure of Andrea West as CEO of the Batten Disease Family Association, effective from the 1st March 2018.  Since September 2010, Andrea has played a critical role in the development and success of the Charity and while we will miss her and her dedication and commitment, we wish her the best of luck in her new role as the CEO of the Dystonia Society.

Over the next few months, we will be conducting a search to find the new BDFA Chief Executive. During this transition period, it is our priority to find the best person to lead and carry on the vital work of the BDFA, while still maintaining a stable and effective organisation. Andrea will continue to be heavily involved in our work until her departure to ensure a smooth transition. We very much intend that it will be ‘business as usual’.

Again, we cannot thank Andrea enough for the dedication, passion, enthusiasm and motivation she has given the BDFA over the past 7 years. She will be greatly missed by the staff and Trustees alike. We look forward to following the success of her career and are hopeful and excited for the next chapter of the BDFA as we continue to fulfil our mission to support our children, young people and families 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 a cure is found.

If you have any questions or concerns during this transition process, please do not hesitate to contact us via  During the Christmas break (18th December – 2nd January), please contact our Co-Chair, Pauline Docherty at 

Mike O’Connor
BDFA Chair of Trustees

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