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We would like to announce that we are looking for a new part-time CEO to take the BDFA forward.

The new CEO will work 30 hours a week, in line with our restructured budget.

Samantha Barber is leaving the BDFA  in December after 18 months in post on a fixed term, interim contract.

We would like to thank Sam for all her hard work and dedication to the Batten community during this time – to the organisation, our staff and most importantly our families in particular through the trial period and her work with NHSE and NICE. Sam has been pivotal in helping the Trustees to stabilise our vital but what has felt like a fragile organisation – she has truly gone above and beyond the call of duty during her time with us. We are very grateful and wish her well in her next role and we know she will excel.

For details of the role please visit CharityJob.

Donate to the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

Thank you for making a donation to the work of the BDFA.

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease