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The Board of Trustees of the BDFA is very pleased to announce the appointment of Amanda Mortensen as the BDFA’s new Chief Executive.

As many of you know, Amanda has served as a trustee and then as Chair of the charity for the last two and a half years. It has been a hugely challenging and turbulent time and Amanda has worked alongside our previous CEO to get the charity to a much stronger position. This makes her well equipped to take on the leadership of the BDFA.

We apologise for the delay in making this announcement and we know that many parents have been asking our Support Officers about the situation. Because Amanda was the Chair, we had to seek permission from the Charity Commission to make the appointment, which has taken some time. We are pleased to say that the Charity Commission were happy with our recruitment process and gave written approval.

Amanda joins us from AMAZE, a Sussex based charity that give information, advice and support to families of children and young people with special educational needs. Her background also makes Amanda very well placed to take on this role as the charity moves forward.

Amanda will take up the CEO role on the 24th February 2020.

“I am delighted to take up the role of CEO at the BDFA, an organisation I have become very passionate about over the past few years. I very much look forward to working with families and stakeholders to provide the very best support and advocacy for families affected by Batten disease.”

We would like to take this opportunity to thank Samantha Barber for all her hard work over the past few years. We have been through an incredibly challenging period but her hard work and commitment has put us in a great position and we wish her the very best for her future career.

Amanda has now stepped down as Chair. Pauline Docherty will take on the role in the interim but we are now looking for a new Chair to lead the organisation. Please email Pauline Docherty at if you are interested in talking to us about this role.

We are delighted to welcome Amanda to the role of CEO and the Trustees and staff look forward to working with her to continue to make a difference to the lives of those affected by Batten disease.

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