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We are sorry to announce that Lucy Roose the BDFA Office Manager will be leaving the Batten Disease Family Association on 29 June to start her theological training to become a Church of England priest. While we are saddened that Lucy is leaving us, we all recognise that Lucy has a vocation and hope you will all join with the team and trustees in wishing her well for the future.

The role of Office Manager will not be replaced immediately for a number of reasons, including recruitment being difficult over the summer months and a review of the Office Manager function. It is envisaged that this will be the situation for a few months. During this period, Samantha Barber will cover the main duties with additional support from Lisa our part-time admin, trustees and other volunteers, such as the recently advertised Volunteer Fundraising Administrator.

We would like to take this opportunity to publicly thank Lucy for her dedication, enthusiasm and the huge organisational skills she has given the BDFA in a variety of roles over a number of years. She will be missed by us all.

If you have any questions or concerns during this period, please do not hesitate to contact us via

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